Trinity

No More Neck Brace!!

2012-02-14T07:59:00.002-06:00

Many new updates to share with you, but let's get to the good news first! Yesterday Trinity had her Orthopedic appointment. The X-ray looked good and the rod has stayed in place. After 3 months of the neck brace it finally got to come off yesterday! Trinity was so excited to get it off! She's a little week in her neck from not using it, but overtime she will restrengthen. They are thinking the TLSO will have to stay on until a fusion is done in the future. The one rod is not strong enough to hold her curve and they just don't think a second rod would be good for Trinity, so we need to keep the TLSO to keep her back supported. They will do a lengthening to her rod in May. We also discussed her feet. We have noticed lately change in the shape of her feet. So they would like her to start wearing her AFO braces on her feet and ankles to keep them from getting any worse. We loose one thing and gain another.

Last week she had some tests done on her bladder. They did a Urodynamics test. This test would help in telling them the amount of volume her bladder can hold and the pressure that the bladder has when the bladder starts to fill. Basically anyone with a normal bladder doesn't show any pressures because when their bladder is full the have the ability to empty it. The test showed that she has a very poorly compliant bladder whose pressure exceeded 20 when filled with less than 100 cc of water. Her end pressure was about 50. This is bad! You don't want to see pressure at all, but you really don't want to see it above 40. This over time can cause kidney failure. So for the next 2 months we are going to be doing a Foley catheter overnight so her bladder does not reach high volumes and continue cathing her 4x's a day with irrigating the bladder twice. If she continues to get UTI's over the next two months we need to see the doctor sooner than our April follow up, otherwise in April they will rerun the tests and see if anything that we are doing is working. The doctor would like us to consider a Vesicostomy. This is an opening in the abdomen that allows urine to drain continuously from the bladder. A small wall of the bladder is turned inside out and sewn to the abdomen. The opening would look like a small slit surrounded by pink tissue. This can be reversed at any age when Trinity is socially ready to be out of diapers. This procedure will help reduce UTI's and kidney damage. The doctor feels this surgery is a good choice for Trinity. There a minimal risks and he has seen very few revisions have to be done. Shannon and I have some praying to do about this.

Some other good news, Trinity was a recipient of an iPad through the local Rotary club!! One of her fabulous teachers Mary Beth, approached them about Trinity and her needs, especially in her speech and how the iPad would benefit. This is really exciting and we are anxious to start getting apps for her. She loves using it!!!

Happy Valentine's Day!!!

"I am your Strength and Shield"

2012-02-01T14:02:00.002-06:00

As I awoke today to Trinity saying, "Mom, I awake!" I probably didn't respond like God wanted me to. Over the last month sleep has been a thing of the past in our house. Trinity has nights that are restless and Trew has not gotten to the point of sleeping through the night, in fact he probably sleeps worse now than he did when he was a newborn. So when Trinity yelled for me this morning with that sweet little voice, I rolled out of bed, very out of it, and not ready to start my day. See starting the day in the Arthur household is not as easy as getting out of bed and grabbing a cup of coffee. Trinity has a lot of needs in the morning and at bedtime and I will fully admit that there are times I want to shut the door to my bedroom, pull the covers over my head and pretend like I can't hear those small voices yelling for me. I need prayer, BAD!!! I am tired, overwhelmed with life, and probably unbearable to be around at times (just ask Shannon!). But today God gave me some words to ponder on during my devotion time and I want to share it with you.

"Follow Me one step at a time. That is all I require of you. In fact, that is the only way to move through this space/time world. You see huge mountains looming, and you start wondering how you're going to scale those heights. Meanwhile, because you're not looking where you're going, you stumble on the easy path where I am leading you now. As I help you get back on your feet, you tell Me how worried you are about the cliffs up ahead. But you don't know what will happen today, much less tomorrow. Our path may take an abrupt turn, leading you away from those mountains. There may be an easier way up the mountains than is visible from this distance. If I do lead you up the cliffs, I will equip you thoroughly for that strenuous climb. I will even give My angels charge over you, to preserve you in all your ways.
Keep your mind on the present journey, enjoying My Presence. Walk by faith, not by sight, trusting Me to open up the way before you." Jesus Calling 365-Day Devotional

I am in a rut and I need to get out of it. Shannon is the most amazing husband and father. He lets me go do things with my friends at night and a couple weeks ago I got to enjoy a weekend with some of my girlfriends at a cabin. But see what I really need is some one-on-one time with my husband. I need a vacation!!!! I need sleep!!!! We are blessed to be a part of a wonderful church that provides Respite Night for parents of children with special needs, so we will be participating in that next weekend. I think I am having a pity party for myself right now. I look around at our friends and family and often wonder, "What is life like for them? Do they know how hard it is for us?". WOW, BAD ATTITUDE!! BUT, God is at work in me. He's changing my perspective on life and giving me new glasses to look out of. It is not about me and how I am feeling, it's all about HIM!! My focus is changing and I am a work in progress. We don't change overnight, but I do have the choice of my attitude everyday. I need to learn to let God take control of all the troubles and trust that he will see me through everyday! Being a parent of a child with special needs is not easy, and some days I want to run away, but I would not trade one day of my life for something different. God gave us three beautiful gifts; Aubree, Trinity, and Trew! Now it is Shannon and I's responsibility to raise them to love the Lord and serve Him. "Train a child in the way he should go, and when he is old he will not turn from it." Proverbs 22:11
My hope is that if you are reading this right now and wading through the troubled waters of life, I hope you see that waiting on the calm shore is Jesus and his arms are open wide ready for you to let him have the driver's wheel of your life!

Prayers Needed!!

2012-01-17T17:25:00.002-06:00

Trinity could really use your prayers. She's vomited everyday since December 21st. Some days she vomits once and others it can be 2-3 times. It usually occurs when she's in bed or when we get her out of bed in the morning. Yesterday they did an MRI and Tapped her Shunt. They found nothing. Which I guess we should look at as a positive thing, but it still leaves us with the question of what is going on. Trinity has vomiting issues anyways, but never this frequent. They also did a urine culture and found nothing. So if any of you have kids with similar issues, PLEASE COMMENT and give us some advice. I feel like we have tried everything on our end and we are still not seeing any improvement. If you also have any good suggestions for GI doctors or any suggestions at all PLEASE COMMENT!!! We are frustrated. No one seems to be able to give us any answers. Prayers would also be very much appreciated! God is the Great Physician and can still provide a miracle.

Her back is healing great! She goes back to the doctor on February 13 for an x-ray and checkup with the Orthopedic surgeon. She's also having some bladder tests done in February also.

Trinity is glad to be back to school. She loves being with all her friends and teachers. We had an IEP meeting and they had nothing but great things to say about her. It is nice to hear some positive things for once, instead of negative.

Happy New Year

2011-12-30T13:35:00.002-06:00

It has been awhile since we updated all of you. Trinity is doing well! She had a checkup a couple weeks ago and everything was healing well. She will see the doctor again in February and they are hoping to remove the upper neck part of her brace. They are planning on keeping her TLSO brace on her for probably another 3 months after that, if not longer. They will probably adjust the rod in about May. We are happy to say no problems with this rod so far! Dr. Walker was very happy with the results.
She's having a lot of issues with her bladder and having more frequent UTI's. So she's going to have some more testing done in February to see what is going on.
We had a great Christmas and excited about our New Year!!

It's a Penny!!

2011-11-13T19:06:00.002-06:00

Today they did another x-ray and the coin was located in the upper part of her stomach and showed no signs of moving in a 24 hour period, so Trinity's G-I doctor decided it was best to go in and retrieve it. At 11:00 this morning Trinity went in for her third surgery in 5 days. They put a scope down through her esophagus into her stomach and retrieved the "Penny". They thought it would have taken around an hour or so, but it only took 10 minutes! They were all quite impressed with the record time they found it in. She came out of surgery great and made her way back to her room around 12:15. We thought we were there for the night, but we got surprised with the news that Trinity would be discharged later in the afternoon!! We were excited to hear that.
So as I write this we are relaxing at home and Trinity is doing well. She's showing some pain and discomfort, but not surprised with the brace she has to wear. This is going to be a long 12 weeks that she has to wear it. We have the "penny" sitting in a container and will be putting it somewhere in safe keeping. The nurses were all excited to hear what the mystery object was in Trinity's stomach, when we got back up to the orthopedic floor. They were wishing they would have made bets on what it was. When we left today I was once again reminded how loved our little girl is. The nurses all line up as we leave and most giving her hugs and kisses. It feels so good to know that they all have so much love for our little angel!! When I asked Trinity if she was ready to go home, she told me no. I guess that just goes to show how much she loves Gillette and their nurses!!

No Coin

2011-11-11T18:20:00.003-06:00

After 2 hours they were unable to remove the coin. They think when they stuck the scope down that it put pressure on the coin and pushed it down into her stomach. They are going to do an x-ray tomorrow morning and a consult with G-I doctors and see where to go from there. They also did a brohnoscopy while they were in there to make sure it wasn't in her airway and of course found nothing, but did find a lot of mucus that they suctioned out and are hoping that might help with her oxygen levels. They had to intubate her for this which they were hoping that they wouldn't have to do, so we are not real sure when we will get out of here.

Trinity the Piggy Bank!

2011-11-11T11:43:00.003-06:00

We found out today that Trinity has a dime stuck in her esophagus! Crazy huh?!? They did an x-ray to check her rod and brace and found it on the x-ray. When they pulled up the x-ray from her last surgery they noticed that it was there then too. Unfortunately it was right over top of her rod and was not noticeable. So some time before her first spinal rod surgery she swallowed a dime. I am in total shock! Trinity does not put things in her mouth because they make her gag and choke so this completely shocks me! She will go down to surgery around 2:00 and is scheduled at 3:00 to have it removed by the ENT with a scope, alot like a endoscopy. We were hoping to go home today, but I am not thinking that is going to happen, plus she's having a hard time coming off of oxygen and has been dipping down into the low 80's for her oxygen levels. They are going to continue to watch it, but thinking it has alot to do with her being flat for the past 3 days, so we are crossing our fingers that's all it is. They are also still working out some minor details on her brace to make it as comfortable as possible. It is very restricting for her. I will try to take a picture of her once the brace is done and post it on here. It really breaks your heart to see her in it, but if it will keep the rod from coming detached again then we have to do what is best for Trinity.

Surgery Done

2011-11-09T14:37:00.002-06:00

A little late on the update, but Trinity was done with surgery around 11:00 and did great! The surgery ended up taking around 3 hours. She's resting comfortably in her room and they are controlling her pain with Tylenol and Oxycodone. Every time she goes through something like this I am always amazed at how well she tolerates the pain and can handle using oral meds verses IV pain meds.
They only had to open a little less then half her back up to revise the rod. They used two hooks and then a tethered tape to wrap the rod around the bone. They feel like this will help keep it better secured. They are going to add to her TLSO (abdomen brace) an upper part that would extend up to her chin. This will give her added support so she don't bend forward and put pressure on the rod. This will be interesting since she has to wear the brace for 12 more weeks, but we will do what we need to to keep it from detaching again. For today she has to stay laying flat until they get the brace adjusted with the new attachment. They are hoping if all goes well she may get to go home Friday. We are crossing our fingers!
Thanks again for all the prayers and support!

Revision Surgery

2011-11-08T09:55:00.004-06:00

Tomorrow morning, at 6:15, Trinity will be going back in for surgery to revise the current growing rod. The plan is to go in and use three hooks and wire to reattach the rod to the vertebrae. The surgery should take about 3 hours if everything goes as planned. Trinity has still been fighting a cold, but the pediatrician released her for surgery yesterday, so we hope there is no troubles tomorrow morning or during surgery. PRAY, PRAY, PRAY!!!
We are blessed to have our family here again to support us during this time. It always feels good to have everyone with us and I know Trinity enjoys seeing them as well.
My sister-in-law, Tasha, sent us this the other day and I would like to share it with you. "God isn't at work producing the circumstances I want, God is at work in the bad circumstances to produce the me He wants!" With all the difficult circumstances that we have been through with Trinity, I pray that through it all we are allowing God to work through Shannon and I, and glorifying Him in all things!
Thank you for all the prayers and support!!!

Spinal Rod Detached

2011-10-31T20:07:00.003-05:00

Last week Trinity had an x-ray and appointment with Dr. Walker (Orthopedic Surgeon). Unfortunately it was not good news. Trinity's spinal rod has come detached from her vertebrae and is sticking out in the upper part of her back. Fortunately it has not caused any infection or broke through the skin. They had her scheduled to go in on this Wednesday to repair it, but she currently has a really bad cough and the surgeon and anesthesiologist don't feel comfortable putting her under with that going on. So we are looking at next Wednesday if she's healthy. The plan is to cut her open from the top to the mid part of her back and reattach the rod with three hooks verses two and also use some wire to wrap around the bone.
Definitely was not something we expected to happen this soon after surgery, but with Trinity I don't think anything happens by the books. She has handled it very well and has not complained of any pain. We are very thankful for that! This is very discouraging for us and hard to think about putting our daughter through yet another surgery, but we are reminded that God is "Bigger" than our problems and He will guide and protect her through yet another surgery.
We could really use your prayers. It is so difficult to watch your kids go through difficult circumstances and not be able to do anything. Can you imagine how God felt when He watched his son die on the cross to cover "our" sins? We are always reminded by people the impact that Trinity has on so many and that God is using her to "Glorify" Him. I have found myself picturing the day that Trinity enters His pearly gates and how they will interact with each other. The delight He will have in her as she "RUNS" to His open arms! "Oh Glorious Day!"

Fun at Sunday School!!

2011-10-16T13:45:00.003-05:00

Trinity had her first day back to Sunday School and was so excited to see her Guardian Angel, Shelly. In fact she woke up around 6:45 and wanted to get out of bed, but because she really needed to stay connected to her feeding pump she argued with me for awhile about getting up. Finally I told her if she stayed in bed and went back to sleep she would get to go to church and see Shelly, she closed her eyes and I didn't hear another thing from her until 8:00. She obviously loves Sunday School and Shelly!! She did great and was really happy to be back with some of her friends. Tomorrow she will go back to school and only go for an hour. The doctor don't want her going back full-time until after her 6 week check up. This will also help us ease her back into it. She got cards a couple weeks ago from her classmates and it brightened her day!

We still don't have any answers to her vomiting. She's still doing it, but we made a decision ourselves to start feeding her into her stomach instead of bypassing it. This way when she throws up she has something to come up and it's not so painful. Hopefully we will get a call from the doctors tomorrow so we can get something figured out.

Still Vomiting :(

2011-10-11T12:58:00.002-05:00

We have a call into the hospital, but are still waiting to here back from them. Trinity is still vomiting and hasn't had much improvement. We tried feeding some Pedialyte through her tube the other night and it at least got some fluids in her stomach, but we still have the vomiting. I wouldn't be so concerned, but I don't want her to get dehydrated and the dry heaving breaks my heart to watch.
Other than that, Trinity is doing great! She wears her TLSO like she's suppose to and has handled the pain like a champ. She amazes me everyday. I think of how I handled having a c-section with two kids and the pain I felt, but Trinity don't show any pain and you would think after being cut from your neck down to your bottom you would have some extreme pain. We have one tough little girl!
The weather is beautiful here, but it is so hard to enjoy with Trinity. She gets so hot in her TLSO and one of the meds she's on overheats her body at times. But we are trying to get her out as much as she wants.
Aubree is loving school and is teaching us some Spanish, although her dad is pretty good at it. Trew is a very happy little boy. He's growing so fast and getting a personality.
We appreciate your prayers!! I often imagine the day when we can share these times with Trinity and show her how loved she is by all of you!

Prayers Please!

2011-10-08T21:23:00.002-05:00

We could really use your prayers. Trinity has been vomiting during the night not just once, but 2-3 times a night. Vomiting is not out of the ordinary for Trinity, but since she is now getting all her feeds straight into her small intestine, this makes vomiting a lot harder since she has nothing in her stomach. She wakes up with a blood curdling cry and by the time we get into her room she has either thrown up or is just starting to. She won't take a bottle anymore and before surgery that is the one thing we could get her to take orally. So with that said she's throwing up bile and mucous. I know what it feels like to have nothing left to throw up and what a horrible feeling it is. I can't imagine being in her little body that is healing from a major surgery and dealing with this.

How can you help? Please pray! We are puzzled and unsure if something major is wrong or if it is from her body still healing. Because vomiting is not out of the ordinary for Trinity we weren't all that concerned at first, but now that it has happened every night since Tuesday, we are starting to get concerned. If it continues throughout the weekend we will probably call the doctors on Monday. It is so difficult to be a parent and have all these concerns and worries all the time. That is where we have to give it to the Lord and "trust" in Him!!

On a positive note, Trinity is healing well. She has worn her TLSO like she's suppose to and handled it very well. She don't argue when she needs to spend time resting and being hooked up to her feeding tube. She's still not quite herself, but she tries to spend as much time as she can in her cart playing with Aubree.

The kids really enjoyed having Grandma Kathy here this week and were sad to see her go home today. She's been a huge help! Tomorrow their Nana, Paula, and Great Grandma Shearer will be here to stay with us and help out. We love having the extra hands and the kids love all the attention they get!!

Shannon and I would like to "thank" everyone for all your support and prayers over the last week. Trinity has received beautiful flowers, stuffed animals, Barbies, balloons, cards, and lots of phone calls. Everytime we go through something like this we are always so amazed to see the outpouring of love our family gets. We will never have enough words to express our gratitude!

We Are Home!!

2011-10-04T08:40:00.002-05:00

It is so hard to believe, but Trinity is home and doing well! A 7-10 day stay in the hospital only turned into about a 5 day stay.
Before going home yesterday they ran a few tests, did an ultrasound of her kidneys, and an x-ray in her TLSO. Everything looked great. On Friday her urine showed evidence of a UTI so they are treating her for that. They wanted to make sure before sending her home that she didn't have urine going up into her kidneys since she was getting UTI's so frequently. But her kidneys look good.
We had to go home with twice the meds that she went in with and she has to be hooked up to her feeding tube 20 hours a day, which is going to be difficult when she becomes active again. They want to get some more fat on her little body.
On the way home yesterday from the hospital Shannon and I found ourselves again praising God for such a wonderful outcome. From thinking she would be in the PICU and intubated to going to the regular floor breathing on her own. Then recovering so well that she's home already, GOD is GOOD!!! We have a lot to be thankful for!
Please continue to pray for Trinity's recovery and that she can soon come off the pain meds. Our friend Will is also in the hospital after having hip surgery. Please pray for him and his mom, Rebecca. We enjoyed getting to spend some time with them in the hospital. The doctors and nurses called them Romeo and Juliet!

Day #4

2011-10-02T17:19:00.003-05:00

Hope everyone is enjoying their Sunday afternoon. It looks gorgeous outside here in Minnesota!
Trinity is doing pretty good. She's been on a few wagon rides yesterday and today and has enjoyed getting out of her room. She's been wearing her TLSO(abdominal brace) for an hour at a time to help keep her back straight so she don't do any slouching. She will need to wear this for the next 12 weeks while awake during the day. Her fever has come down, but still in the 100-101 range. They are not real concerned with it, but just continue to watch it. We had some vomiting this morning, but that has been the only time since the surgery which is good. They are keeping her feeds low at 25 ml's/hr which is less then an ounce. Hoping to increase it some more tonight.
The hope is that she will go home tomorrow, so we are keeping our fingers crossed for that. She looks great and we still can't believe how straight this has made her. Trinity is such a tough little girl!!
We can't thank you all enough for your continued prayers as Trinity recovers. We are blessed to have such wonderful family and friends!
**Also wanted to note that the pop tabs that all of you have been donating have been going to a great cause. This summer Ronald McDonald House opened in Gillette and is located inside the hospital. This has been great for our family during this stay. We are able to donate the tabs to help benefit this organization, so "thank you" for your continued support.

Before and After Surgery X-rays

2011-09-30T12:27:00.003-05:00

Good morning to everyone! Just wanted to give a quick update this morning and share some X-rays so you can see the great improvement after Trinity's surgery. Once again her curve pre-op was 85 degrees and post-op 50 degrees. Trinity is doing well this morning with the exception of a small fever and being heavily medicated to control the pain. Thanks again for everyone's continued thoughts and prayers!

Surgery and Recovery

2011-09-29T19:29:00.003-05:00

As days end starts to draw near Miranda and I have a lot to be thankful for. So many thoughts, feelings, and emotions run through the both of us. Of all the feelings, thankfulness is the most prevalent feeling we have.

Last night Miranda and I had an experience that we haven't felt for awhile. We gathered at the Westwood church for an anointing service for Trinity. We were accompanied by lots of friends, family, and members of the church. This was led by pastor Joel and was an extremely overwhelming feeling of support and affirmation that where two or more gather God is there. Thanks be to God for friends and family!

The day started early at 5:30 am as we all were getting ready at the Arthur residence. Out the door on time and headed for the hospital I was soon reminded that dad does not do a lot of big city driving, and " follow close behind me " could be a challenge driving across Minneapolis. We arrived on time to the hospital and got checked in. Trinity was so amazingly strong through the pre-op I couldn't believe it. Trinity brought laughter to Miranda and I as she directed the nurse where her pulse oximeter was to go on her toe not her finger, and was quick to put the blood pressure cuff on her leg and not her arm. " I guess you know how you want things " the nurse replied. Dr. Walker came in and talked us through what was going to happen and as a laid out a general time line. A few highlights were, surgery 4 to 6 hours, 7 to ten day stay after surgery, and keeping Trin intibated for one to two days was probable. We were able to pray with both Dr. Walker and Koop before they took Trin back. God was busy at work this morning! Lastly, came the long walk down the long hall to the ever so dreaded departure of Trinity to the surgery room. Miranda and I were a bit of a mess while Trinity stayed strong not to shed one tear, once again I was amazed in her unbelievable strength.

To give everyone a little background on the particulars of the surgery, we were instructed that they would be placing either one or two titanium rods on one or both sides of her spine. Prior to surgery today Trinity had a 85 degree curve to her spine. When I try to put that in perspective for people I always ask them to picture a 90 degree angle and know the Trins angle is 85. If you look at this on an X-ray it is a bit puzzling. I have a included rough picture to give you a visual of what they are doing.

At around 11:30 Dr. Koop came out to greet us with a smile and provided us a huge feeling of affirmation. Everything went very very well! Wow, what a huge feeling of relief and answered prayers. He continued by telling us that Dr. Walker had the rod placed and was working on getting Trinity closed back up. At around 1:00 Dr. Walker came out to further inform us that everything went as good as it could have and was Trinity was a trooper. A total of 20 CC's of blood was lost throughout the surgery which is less than one ounce, and is hardly anything for this type of surgery. God continues to work!

In the post-op room we greeted Trinity and the nurse and were informed that due to her strong breathing after the surgery they were able to pull her breathing tube. They also informed us that because Trins vitals were so strong we were headed for a normal hospital room instead of the PICU which we were told. God continues to work!
As it sits right now Trinity is doing very well with the exception of a little fever which has been fairly normal with previous surgeries.

The last highlight of the day that I wanted to share happened this evening about 6:00 PM as doctor Walker walked by me as I sat in one of the waiting rooms down the hall from Trinity's room. I stopped Dr. Walker and asked him what was the most people he has had ever praying for him for a surgery. His response was, I'm not sure but I assume I have had some. He then asked how many I thought were praying for him and Trinity today. I said I would say a few hundred for sure. He then shared that he and his family attended church and he was a believer. He followed that by saying that he has had some surgeries that go very well and some that have gone not so well, but today's he said went unbelievably well. He then looked at me and smiled and shook my hand. God continues to work! Thanks to everyone for all or your thoughts and prayers, God has certainly answered them today!

Surgery and Updates

2011-09-19T20:59:00.003-05:00

Next week the 29th, Trinity will have growing rods placed at Gillette. With it only being about a week away it is definitely causing some butterflies in the stomach. This was a big decision for Shannon and I, but God has given me a peace about it and we are putting our faith and trust in Him! They are looking at it being around 5-6 hours and she will probably be in the hospital a minimum of 7 days. Last week she had many prep-visits with her pulminologist, pediatrician @ Gillette, and neurosurgeon. They changed her feeding tube from a G-Tube to a GJ-Tube with a long extension so after surgery with her having to be on her stomach this will make it easier to feed her through her tube. They added 4 extra hour of feeds through her tube a day to help with her nutrition and also hoping that she would gain some weight. We also added some protein because the bloodwork they did showed that her levels were low and this will help with her healing. They also see in some x-rays that her bowels are very backed up so they are having us do water enemas that have not been a ton of fun. But hopefully all these changes are going to prepare her little body for this big surgery and she will heal quicker and get along a lot better after surgery.

Today Trinity got some new glasses and they make her look older and soooo cute!!! This is going to be a huge adjustment for her, but Trinity is the queen of adjusting. She also started school last week and loves it. She's in an integrated preschool class 3 days a week in the morning. She has some awesome teachers and nurses!! It has been so neat watching her interact with the other kids. She's not real crazy of gym time because of the noise, but luckily it is a big gym with lots of corners! She will be going until next Wednesday and then will be out of school around 3-4 weeks and then only going back part-time until she recovers from surgery.

The last few weeks have brought a lot of adjustments to the Arthur house. With Aubree starting kindergarten, Trinity starting preschool, many medical adjustments for Trinity, new glasses, and just the preparation of the upcoming surgery there has been a lot of stress and tears. God has blessed us with an amazing family and Shannon and I feel so blessed in so many ways! A few weeks ago we had the privilege of sharing in one of the most awesome experiences. Trinity and Trew were dedicated at Co-Line pond in Sully by Joel Schnell (Shannon's brother-in-law). The day could not have been more perfect! Since moving away from Iowa we have not felt led to join a church and since finding out about this surgery I had felt the need to get Trinity dedicated, but didn't really feel comfortable doing it without our family present. So with much prayer we asked Joel because he is someone that Shannon and I have a lot of respect for and look up to as a Godly man. We had all our family there to witness and to help in praying over our kids and family. It was AWESOME!! There are not enough words to express how amazing the day turned out and how the presence of God was all around us! (Aubree was dedicated in Iowa when she was a baby)

So as next week approaches I am going to work on replacing "fear" with "FAITH"!

Surgery?

2011-08-10T08:35:00.002-05:00

We are having a great summer so far! We made our first trip to the beach a few weeks ago and the kids had a lot of fun! Trinity did great in the water and had so much fun army crawling on the beach. School will be here before we know it. I can't believe I will have a kindergartner and a preschooler! I am having a hard time with it. :(
A few weeks ago we were in Iowa and had an appointment with an orthopedic surgeon at the University of Iowa, Dr. Weinstein. We didn't learn anything knew regarding Trinity's scoliosis. He feels that there is no doubt that she needs the surgery and that it needs to be done soon. He said that he feels that we are in good care here and that there should be no reason a surgeon up here couldn't do the surgery. He don't feel it is necessary to do the surgery in Iowa, especially with all the follow up care that she will need and the risks is infection and her body rejecting the rods. He agrees that the brace is doing no good, but that she would definitely need to wear it for about 2 months after surgery to keep her back straight.
We are still really struggling with this surgery and the surgeons. We want the best for Trinity and making these decisions can be so hard on the both of us. The biggest hangup is Trinity's size and her age. This is not a common surgery for her age and her size. She don't have much fat on her body.
As for now surgery is scheduled for September 29th. The surgery can take anywhere between 5-6 hours, but if they have to go through the abdomen and the back it could take 9-10 hours. I don't even like to think about it. I have given this to the Lord and we are trusting in Him to guide and direct our decisions.
On Thursday we see her Urologist. This will be an interesting visit considering that Trinity has had numerous UTI's in the last 2 months. Hopefully they won't want to do anything sugically soon, but surgery has been brought up before.

Busy House!!

2011-06-28T15:53:00.005-05:00

Wow! It has been a long time since our last post. I guess that means we are really busy with our new addition to the family. We were blessed on May 17th with our baby boy, Trew Duane Arthur. He weighed 7lbs 14oz and 19inches long. He's such a good baby and has been a huge blessing to our family! Most think that he looks like his dad, but I am hoping that might change so I could get one child that looks like me!! (not looking real promising) Trinity and Aubree love him so much and are big helpers! Trinity likes to steal his pacifier from him, but we are working on that :) Aubree is a little momma to all her siblings and this helps mom out a lot. We are very blessed to have such a wonderful family!!!

Last Monday we had an appointment with Trinity's Orthopedic Surgeons. Not great news unfortunately :( To better explain our appointment I am going to type right from the dictation of Dr. Walker.
"On examination today, Trinity was examined by Dr. Koop and myself. Inspection of her back reveals once again that she has a large left thoracolumbar prominence. She has a deep right waist crease. With traction under axilla and pressure over the lumbar spine, there is moderate flexibility and the curve can be improved. Examination of her hips reveals that she does have a mild hip flexion contracture of approximately 5 degrees on the right and 5 to 10 degrees on the left.
Her previous x-rays were reviewed including her sitting AP and lateral x-rays out of her braces on April 21, 2011, as well as the traction film. Out of the brace, her curve measures close to 85 degrees from approximately T8 to L4. Her traction film shows this improved to approximately 60 degrees.
At this time, it would be reasonable to proceed with surgery since bracing is no longer effective. If the curve is not addressed, it would likely get progressively worse and eventually lead to greater problems with regard to sitting, skin issues, and potential other longer-term issues, such as pulmonary or cardiac problems. In light of her young age and size, some form of surgery to preserve growth would be preferred. There would be options of possible single or dual growing rods versus VEPTR therapy. In specion of her skin and soft tissues show that she does not have a great deal of soft tissue coverage. Dr. Koop and I agree that some form of a "growing rod" type system would be our preferred choice. However, both types of implants have issues or concerns. First of all, there would be a potential risk such as infection, rod breakage, or loss of fixation to the spine either proximally or distally at the upper or lower parts of the spine. In addition, we would have the initial surgery and most likely be able to put in a single growing rod. This may mean that she would need to have continued use of a brace. Eventually, she would potentially have a second growing rod placed if she had adequate soft tissue coverage and size. Furthermore, the goal would be to preserve her growth. She would need to have a subsequent scheduled lengthening every six months to lengthen the implants. However, if an unscheduled problem or complication arose, such as infection, loss of fixation, or a broken implant, then she might need to have an unscheduled or unplanned procedure. Ideally, we would try to preserve her growth for at least the next three to five years. If we can preserve growth until she is age 8 or older, then she would potentially require a definitive fusion of her spine at that time. If we encountered overwhelming complications, then we many need to abandon the implants and remove them."
So there it is the plan going forward for Trinity. However, I will be back this month while Shannon is in Alaska and have scheduled an appointment with a doctor in Iowa City. We feel like something this complicated needs to have a second opinion. If anything to give us peace of mind. The surgery is scheduled for September 29th. We wanted to get it on the books since both surgeons have conflicting schedules.
This is a huge decision for our family. We would greatly appreciate your prayers as we get the second opinion, but also pray for the doctors and that they would have confidence in this surgery and that God would guide them moving forward.

Growing Rods vs. VEPTR

2011-04-20T14:37:00.002-05:00

Trinity had her checkup last Monday with her Orthopedic Surgeon. They did some x-rays in her new brace and found that it is not helping with her scoliosis and that they feel like her spine is getting stiff and unable to be flexible. On Wednesday they had a conference with all the Spine doctors at Gillette and are requesting that they do some more x-rays and some traction x-rays. Some of these will help them determine how flexible her spine is. As of right now the plan is to do growing rods or a VEPTR in July or August. They are being considerate of the new baby coming, but also letting us know that it can't wait much longer. Her curve is about 70-80 degrees and for as young as she is and petite, this is not a real common surgery for someone like Trinity. Shannon and I could really use everyone's prayers!!! This is very hard for us to digest and to know what is right for Trinity. This would be something permanent in her body until she is old enough to do a spinal fusion. With how small she is it is hard for us to wrap our heads around her having these rods in her body and what does that mean for her; pain, breaking of her bones, etc... I have been doing a lot of research online, but nothing seems to be helping us determine what is right for her. She needs something done because this can't go much further, but it is hard to think of surgery again. If you know of someone that has a child as young as Trinity with growing rods or the VEPTR please put them in contact with me. I would love to talk to someone that has been down this road and to know what life looks like for them after the surgery.

We will be sure to let you know how the x-rays go and if there is any other decisions that the doctors make regarding her scoliosis.
Thanks for the prayers!

Many Updates!

2011-04-05T08:20:00.002-05:00

Happy Spring!! I wish I meant that, but unfortunately it is still cold here and we still have some snow on the ground, but hopefully the fun, warm weather is just around the corner.

Lots of new things have been going on with Trinity. She had her teeth cleaned for the first time and it went great. They had to put her under for the procedure because of her vomiting, but her teeth came out looking nice and clean with no cavities or rotted teeth. This was a huge relief, we really thought her teeth were bad because of all the vomiting she does and we can never get a toothbrush in her mouth long enough to be effective.

On St. Patricks day Trinity got her new TLSO (brace). It is really uncomfortable for her, but because her scoliosis is getting so bad we have to do something to prolong any surgeries. She has done really well tolerating it.

They have also switched Trinity's formula to EleCare. This is a hypoallergenic medical food to help with the food allergy they think she has to the Pediasure. Unfortunately she will not take this through the bottle orally so without the bottle she really don't get anything orally. This has been really discouraging coming on a year of her having the G-Tube in July, we really thought we would have made some progress by now with her eating, but instead we have gone downhill. This is something we could really use some prayers on!

We had the pleasure of spending last week in Iowa with our family. It was really nice to be with them and nice to have Shannon there with us for the whole week. The weather was pretty good and the girls always love being with their grandparents! Now we are preparing for the baby to arrive in May. Hard to believe it is getting that close!

Happy "3rd" Birthday Trinity!!

2011-02-21T17:33:00.004-06:00

Wow, has it really been three years since God blessed us with the most amazing miracle? We have thought back a lot lately to what all has happened in the last three years with Trinity and it feels like a roller coaster ride! We are so blessed to have such an amazing little girl that through everything she has encountered shows so much strength and determination. We are so lucky that God chose us to be her parents!
Thanks for all the prayers through the last three years. Although things continue to go on in Trinity's life and prayers are still very needed, we feel very blessed to have our family and friends always supporting us in prayer!

Crazy Busy!!

2011-02-12T10:10:00.002-06:00

It seems like 2011 has already been crazy busy for us! Trinity has had a few appointments lately. She had a Urology appointment last week that showed some spots on her bladder. They went ahead and started treating her for a UTI, which was confirmed on Monday that she had. On Wednesday she had a Brohnoscopy, Cystoscopy, and a Endoscopy. We are waiting for some biopsies to get back on the Edoscopy and the Brohnoscopy, hopefully we will know something on Tuesday or Wednesday. It did show that her esophagus is very irritated and that could be a cause of a number of things. They promised us that we would not walk away from this without some answers, so I hope that is the truth! The Cystoscopy showed that Trinity's bladder and her sphincter are working against eachother and making it so she don't empty all the way. They would like us to start doing catheters 4x's a day. This was a big disappointment, just because we have always looked at this as being the one thing that was going good for Trinity, but I guess it was bound to happen. They are also going to work on some different ways we can get Trinity to get oxygen at night, since we still have not had any success of her wearing the mask. They want to start machine at night also to see how low her oxygen is going, especially when she is sick with a cold. We are really blessed so far this winter that Trinity has only been sick twice, which is a huge improvement from last year, so we really feel like what we are doing is working for her.

On Thursday we had an appointment with the Dentist at Gillette. Trinity freaked out and cried the whole time, but the little time that he did get in her mouth he didn't see any cavities or rotting teeth, which is great news! In June they are going to put her under and go in and do x-rays, scrape off the decay, and clean her teeth. He said that the brown spots on her teeth will come back because of her diet and vomiting, but they will try and clean them at least once a year. Her mouth is also overcrowded which is pretty common with Spina Bifida kids, so down the road she will have to have some teeth pulled to make some room in her mouth.

I have been feeling pretty good and we have been busy trying to decide on some names and what we are going to do with our room situation. Aubree thinks she is a big girl now and can go downstairs, mom is the one that struggles with it! Aubree has been doing really good in school and Trinity is really excited to start school in the fall.

It is nice to see the sunshine today and finally be up in the 30's. I can handle the snow, but this below 0 temps is getting really old!

We hope everyone has a great Valentine's Day!!!

It's A Boy!!

2011-01-15T10:12:00.002-06:00

On Monday we had our 20 week ultrasound. Because of Trinity's condition we had to have a level 2 ultrasound so they could make sure everything was good with this baby. I will admit it was a little nerve racking going in and waiting to hear good or bad news. The great thing is that the baby looks great and they don't see any signs that there are any problems. It is so amazing the things they can see on those ultrasounds, but I am so thankful for them! We also found out some exciting news, we are having a BOY!!! The girls are really excited and daddy is pretty excited too! My due date is still May 28th, but I will be having a c-section so he will probably come a little sooner then that. It was very refreshing to walk out of the clinic and feel relief for a healthy baby!

Trinity has also had a lot going on. She got her wheelchair and it is going very well for her. They have a few adjustments to make to it and we have to get a tray made, but other then that she's very happy with it!

On Dec. 23rd we seen a Pulmanologist @ Gillette. This was a great appointment and we felt like we are going to start getting some answers. The doctor spent over an hour with Trinity and discussed a lot of what happens on a daily basis for Trinity. He put her on Pulmicort twice a day through her nebulizer and also ordered a breathing machine for her that she is to do at naptime and bedtime. Unfortunately we have yet to get her to wear it, but everything is a work in progress. This should help with her sleep apnea and help open her lungs up and get some fresh air, in hopes it would decrease her pneumonia's. We are waiting to hear back from the hospital to get her in for a a couple night stay to do some testing on her stomach and lungs. With this stay they may look at doing a G-J tube. This would change her tube from going to her stomach and then to her small intestine and instead her tube would go straight to her intestine. This should help with some of the issues Trinity is having with vomiting. Shannon and I are a little leery of this because of how active Trinity is (in her chair, army crawling on the floor, etc...) and she would have to be hooked up to her feedings more throughout the day instead of just getting her overnight feeds. But whatever is the best for Trinity we want for her. I pray for the day that she can eat regular food and enjoy the tastes of things.

We enjoyed two weeks in Iowa with our families, but are glad to be home and get back into our daily routines. Trinity has her evaluation through the school on Tuesday and we will discuss what we will do for school come fall. She has made so much progress on her speech, but unless you spend a lot of time with her it can be difficult to understand. We are looking at an Ipad for her with a speech program, but we want to make sure it is the best thing for her first and that it will meet her needs to communicate with others.

Changes @ the Arthur Household

2010-12-11T14:39:00.002-06:00

Wow has it been a long time since the last post. We have had a lot of changes here and not just for Trinity. Unfortunately as I write this we are getting over a foot of snow, blah, and blizzard like conditions. Not really what I wanted to do on my Saturday, but I guess since we are stuck inside I should take the time to update all of you.

We got some unexpected news about 2 1/2 months ago and have needed some time to adjust to the news and what it means for our family. Aubree and Trinity will have a new sister/brother in May! We thought we were done having kids, but God decided differently. It has been a hard thing to adjust to, but the girls are really excited and I am finally starting to feel better. We have already had one ultrasound and they felt everything was looking good so far. We should have another one in a few weeks and hopefully find out what we will be having.

Trinity has had some exiting things and some not so exciting things happen lately. On Friday she got her new wheelchair that she can officially call her own! This is very exciting for her and gives her so much mobility. It really makes her look like a big girl. Another good note is that a few weeks ago she had her eye appointment and her eyes look great! They said she has 20/60 vision, which is great and her alignment is looking really good. The only issue that she has is her scanning, but that is because of her Chiari and just something we have to work with her on.

We took her to Gillette to see a Pediatric Specialist in hopes to get some answers for her eating, how her g-tube site looks, and with the winter months coming we worry about pneumonia's. She seen Dr. Faville, which was one of the doctors she seen when she had her g-tube placed. He took some time with Trinity and I as we talked through a number of things. He also tried burning some of the granulation tissue that has formed around the outside of her g-tube site. This will be something we will have to do at home about once a week in hopes that it will get rid of it and the green mucus that is also forming. They are going to schedule a visit to see a pulmanologist to discuss her lungs and talk about some preventative things that we can do for Trinity this winter. They would like to do a PH-Probe and also fill her stomach up with milk and a dye in hopes that when she vomits they will track where it is going and if it is traveling into her lungs. We were hoping to get this done sooner then later, but we are having a hard time getting in. We also won't be able to see the dentist at Gillette until February, which is a lot longer then I wanted to wait, but I guess you just get what you can get and hope there will be some cancellations.

Overall Trinity is doing really well. She is having her regular therapy sessions for speech, physical, and occupational, three times a week. We are talking about starting preschool next fall, but the mama is having a hard time thinking of that! We are ready for Christmas here and excited to go back to Iowa to see everyone!
We hope you all have a Very Merry Christmas and a Happy New Year!!!
Love, The Arthur's

Changes in the Arthur Household!

2010-12-11T14:38:00.001-06:00

2010-10-20T15:04:00.002-05:00

Trinity is not feeling very well these past few days. Yesterday we had to take her in because she was running a fever of 104 and was shaking. I was so worried that it was her shunt, but I guess Tonsillitis is better then a shunt malfunction. They put her on some medicine and hopefully it will be gone and she can be her happy self again. She also has some spots on her that look like spider bites, but the doctor thinks that it is boils or staff?? I need to do some research on this, but they were concerned because it can be harmful to her with her shunt, so we are doing a cream twice an day and hoping that it goes away soon.

Shannon and I could use some prayers as we have some decisions to make for Trinity and her sleep apnea. We took her to an ENT doctor in hopes that it would just be her adenoids and we could get them removed and that would help, but unfortunately her adenoids are not the BIG problem. They would like to go ahead and remove them and her tonsils and see if it helps, but there are some risks. Because Trinity vomits so much it could cause her to bleed more then usual and cause a problem for healing. Her sleep apnea is pretty severe and they would like to get something figured out to help her breath better when sleeping and to also help with her respiratory issues. We just don't want to put Trinity through any more trauma if we don't have to. Please pray that we make the best decision!

Things are going good here. Trinity is enjoying the loaner wheelchair that we got from the school. We hope to get hers in a couple months! She also got to visit the school last week and play with some fun things like a smart board. She loved it!!! Mom is not ready for this next step, but I know the day is coming :(

21 Pounds!!!

2010-10-02T20:24:00.003-05:00

Could it be real?? Yes it is!! Trinity has finally, after almost 2 years, gained weight and weighs more then she has ever weighed!!! This is very exciting news and reassures us why we went ahead with the feeding tube. Although she still vomits she is gaining weight and that's great news! Now all we need to do is figure out why she still has vomiting issues, but hopefully that will be figured out soon.

I will admit I am getting pretty bad about updating on the blog, so please be patient with me as life keeps getting busier.

Trinity is doing really good. She continues to get her feedings at night through her g-tube and takes a bottle during the day. We are doing a lot more time in her TLSO and getting her back in her stander after not spending that much time in it this summer. Trinity got a loaner wheelchair from the school until we get her own in a few months. Our most challenging thing right now is trying to get her used to the mask she needs to wear when hooked up to a c-pap machine. She's scared to death of it, but hopefully with time we can get her used to it. She has to go see an ENT in a couple weeks to look at her atnoids. They think they might be enlarged and may need removed. This could play a role in her breathing at night while she is sleeping and could help reduce the amount she would need through her c-pap machine. She had a physical therapy evaluation done on Thursday and it went pretty good. She will be getting more therapy through Gillette hopefully in the next month.

Last weekend Aubree had the privilege of being a very beautiful flower girl in Kayla (Jansen) and Scott Kelly's wedding. It was a beautiful wedding and feel very blessed to have been a part of such an amazing day for such a wonderful couple. Aubree has talked about it all week and I think we will hear about it for a long time!

Orthopedic

2010-08-26T13:18:00.002-05:00

On Monday Trinity had her Orthopedic appointment @ Gillette. They did x-rays of her in the TLSO and her curve is 56 degrees. We are unsure what her curve is outside of the brace because they don't like to do too many x-rays because of all the radiation. This is good for now! I really hate to know what she looks like outside of the brace, but this definitely opened my eyes to how important it is to keep her in her TLSO as much as we can. It has been so hot out and with everything that has been going on this summer I just avoided putting it on her. At least this week we have had a cool down and no humidity so it has made it pretty comfortable for her which is nice. We really need to keep her in this 56 degree range and keep her from getting a any worse curve in her brace. I would like to avoid surgery for at least a few more years. And if it be God's will then I would love to see her make it to the age of 13! (maybe wishful thinking) Question for all you moms, if you have any "cute" onesies that are size 12mth or larger and want to get rid of them or sell them please let me know. Trinity has to wear a onesie to protect her skin and it is hard to find "cute" onsies in larger sizes.

On Tuesday we are going to order her new wheelchair and we are really excited about this! We have had one to trial for the past few weeks and Trinity just loves the freedom that it gives her and it is amazing how different she acts when she is in it. Unfortunately we won't get her new one for about 2-3 months so I am trying to find a place that will rent one to us until we get hers. I just don't feel right taking something away that makes her so happy!

Aubree starts preschool in a few weeks and she can not wait! Trinity also starts her new school year of therapy in a few weeks too. It is kinda exciting because we get to do some in a classroom this year and I am really excited to see how she interacts with the other kids.

I have a prayer request. We met a great family in the hospital and their son Will has been through a lot lately. He spent over 60 days in the hospital and just this past Saturday got out. They have been having a lot of issues with all his meds and it is messing with his heart rate and they are having to put him on oxygen a lot. Will has cerebral palsy and epilepsy. I was so unfamiliar with epilepsy until I met Will. He has numerous seizures in a day and they are trying to control it with these certain drugs, but unfortunately they cause side effects for him. I am asking that everyone that reads this lifts Will up in prayer and ask God's healing on Will. This little boy has been through a lot along with his family. Trinity and Aubree adore him and I am so thankful to have met them!

Shannon and the girls @ Vikings Training Camp!!

How are things going?

2010-08-17T14:40:00.004-05:00

Well things are going pretty good here. Trinity has adjusted to having the g-tube and is taking her feedings overnight pretty good. We are discussing if we are going to do some daytime feedings or not. She seen the GI doctor a few weeks ago and they want to do a PH-Probe test where they stick a tube down her nose so they can see how much acid and fluid is coming up. We also discussed possibly doing a GJ (gastrojejunostomy) tube which would help with the vomiting, but would not allow her to have her overnight feedings. During the test in the hospital we will also see a pulmonologist to look at her lungs. They heard some wheezing in her lungs during this visit and are wondering if some of the vomiting is because of her lungs. They are going to put her on a stronger steroid and we will use the nebulizer 3-4 times a day. We also had our first experience of Trinity's tube falling out, luckily it was in the hospital and I had the doctors there to show me what to do. I now feel comfortable with it and don't have such an anxiety about it.

Trinity also had a sleep study done about 2 weeks ago. She had significant oxygen desaturations going down to 56%. I will not go into great details of the results but in a nutshell she had an abnormal study and they want to put her on a c-pap machine during the night. We will do another sleep study in about a month and at that time they will figure out the right amount that she needs on the machine while sleeping. For now we are trying to get her used to the mask, which has been a challenge. She gets very freaked out about it and we still haven't got her comfortable with putting it on her face so we will try and work at this and hope that in a few weeks she will be comfortable with it. They also want her to see a ENT doctor to possibly remove her atnoids.

On a good note we had her urology appointment and that all went great and her bladder is working well enough that we don't have to do anything at this time!

Trinity is doing some amazing things and I love every minute of it!! She got a trial wheelchair a couple weeks ago and she loves it! We are hoping to get her's ordered soon so we can get it before the end of the year. Shes also saying some words and although some of them are not real clear I can understand what she is trying to say. It makes me so happy that there are some positive things going on in Trinity's life and that we don't always have to look at the negative.

Trinity with Miss America at Gillette!

Trinity and her good friend Will!

1st Night Home

2010-07-12T17:25:00.002-05:00

We are home and things are going pretty good. Last night was a challenge with so many new things to do, but I know that this is what is right for Trinity and I am sure the longer we do this the better things will be. The equipment arrived when we got home from the hospital Sunday night and the nurse was very good about explaining everything and making sure that we were comfortable using it. Although last night did not go as smoothly as I would have liked, I keep reminding myself that it was only the first night and it can only get better, right?

I am missing Aubree terribly, but hopefully will get to see her tomorrow!! She don't even want to come home, which don't make it easy for mommy or daddy. :-(

We are so thankful that once again God has pulled Trinity through a surgery and hospital stay without any complications, God is Good!!

Day 3

2010-07-09T18:39:00.002-05:00

The G-Tube is in and everything went great! Trinity is currently laying in her bed enjoying the morphine and watching some cartoons. Everything went great during surgery and Trinity is doing really well with pain and the adjustment of having a foreign thing sticking out of her abdomen. They are doing antibiotics through her IV over the next 24hrs to prevent her shunt from getting infected and then hopefully tomorrow morning we will be able to start some slow feeds on her feeding tube and be able to go home Sunday afternoon or Monday morning.

It truly amazes me everytime we are in the hospital and the amazing people that we meet. Today I met a mother of a child with cerebral palsy and has serious seizures. His name is Will and he is an amazing little boy that has amazed a lot of people in his life. They almost lost Will on Friday night to a simple mistake by the hospital staff, but by the grace of God he is here today and fighting hard to go home soon. This family has faced many trials in Will's 3 years of life, but they have an amazing strength. A doctor put it very well to me yesterday "Being at Gillette makes me feel out of place instead of the patients feeling out of place!" and that statement is so true. I love that Trinity gets to come to a place that makes her feel comfortable for who she is and without the stares. Trinity can wheel down the hallway and see all her friends wheeling along side her and it feels good!

G-Tube

2010-07-09T09:47:00.002-05:00

Trinity will be going into surgery today @ 2:00 for her G-Tube placement. The surgeon came to see us this morning and was able to get Trintiy into surgery today, which is really amazing considering the surgery schedule. They will place the tube and she will probably be in the hospital until Sunday. It has been a real big whirlwind since finding this out, but the team of doctors feel very confident in their decision to place the tube for Trinity. It is hard to put so much trust into doctors, but we don't always have a choice other then to trust. Please continue to lift her up in your prayers and please pray for the doctors and for Shannon and I. This has been nerve racking for us and just making sure that we are making the right decisions. I will try and update tonight after things have settled down.

Day 2

2010-07-08T11:34:00.002-05:00

It was a long night with wake ups about every hour, we are both pretty tired and hoping to get a good nap today! They took Trinity off of the medicines (to help clean her out) about 9:30 this morning and we are going to start her on the Pediasure in the next 30 minutes through the NG-Tube. The doctors want to do this for 48 hours and evaluate her on how she does with the feeding tube and if she has any behavioral changes with the increase of nutrition and with her colon being cleaned out. If all goes well we will probably be doing the G-Tube depending on when the surgeon can fit her into the surgery schedule, the surgeon will come see her tomorrow and we will go from there. They also did an x-ray of her leg today and we will know tomorrow if the brace gets to come off.

She has really enjoyed the morning so far. They gave her an hour break from being hooked up to the machines and let her ride in her caster cart for awhile. She had so much fun and played hide-n-seek from me in the hallway of the hospital. At least today has been a much better day so far!

Colon Cleanse

2010-07-07T17:05:00.002-05:00

I have a lot to update all of you on. Trinity is currently in the hospital at Gillette for a colon cleanse and a trial with a NG-Tube (feeding tube going in through the nose). We met with the GI doctor about a month ago and they felt that she needed to have a colon cleanse to totally clean her out and see how she does with eating after that. Their concern with her is dehydration because she don't take a lot of fluids. They are really wanting to do a G-tube, but Shannon and I are trying to make sure that is the best decision for Trinity first. Trinity was admitted today at 9:00 am where they placed a NG-Tube to get the medicine for her cleanse, once she is cleaned out they will start feeding her through the tube with Pediasure (same thing she eats in a bottle at home). At that point we need to make a decision whether or not to go ahead with the G-Tube. We are needing lots of prayers in making the right decision. Trinity has already had a long day and it is only 5:00. They had a really hard time getting an IV in and finally had to do it in her neck because she was so dehydrated.

On another note she also has a fracture in her left leg. About 3 weeks ago her leg swelled up and was really stiff. We took her into Gillette where they found a fracture just above her knee. Luckily it wasn't any higher and she came home with a stabilizer cast that looks like a brace. She is suppose to wear it for 3 weeks and we are crossing our fingers that it will come off tomorrow or Friday. We are unsure what happened, but because she has osteoporosis anything from moving her leg wrong or someone falling on her could have caused this. They explained that this will probably be the first of many.

Other then all of these things Trinity has really been enjoying her summer so far. We have had family up from Iowa and have spent a lot of time at the beach, where Aubree and Trinity love the water!

Urologist

2010-05-16T20:44:00.002-05:00

On Thursday Trinity had an appointment with her urologist. This was actually the first time that we had met him. Trinity had a urodynamic test done in December before her untethering surgery and that came back good, so they didn't want to see Trinity for another 6 months.

Dr. Vandersteen, urologist, is a partner with the other urologist that we have seen before at Shriners so it was nice that we didn't have to explain Trinity's situation all over again. He explained that there are a few different types of bladders and Trinity has one that has weak muscles on the outside causing her urine to constantly leak out and not strong enough to hold in her urine. This is not a problem at this time in her life, but when Trinity starts to get older and asks to get out of diapers he recommended at that time that we think about doing a surgery to tighten the muscle on the outside so the urine can not get out and she would have to learn to cath herself. This is defiantly something that we don't have to think about right now, but down the road. We are just happy that at this time she has only had one bladder infection in 2 years.

As for her bowel we are still trying to figure that out. Trinity has issues with constipation and we can not get it under control. We are using Miralax and suppositories and they both are not helping. The Miralax is not near effective because we put it into her bottle of Pediasure and since she don't eat a whole bottle at once she is not getting the full effect of the medicine. They want us to discuss the constipation with the GI doctor next month. An option that we have is to do a surgery that would help flush the bowel on a daily basis, but we want to try to figure this out without surgery if possible.

It was very enjoyable to have a doctor that don't want to play God with our daughter and knows who God is! He made the statement that after I asked the question, "What are the chances that Trinity would learn to urinate on her own when she is older and she won't need diapers or the surgery?" his response to me was that a miracle can happen, but God performs those! That statement is huge to us as so many doctors want to act like they can fix our daughter and perform miracles and really they can't perform the miracle, that is up to God!

We are really enjoying this nice weather and today we got to have a picnic at the park and the girls love playing at the park! Trinity loves being outside and it brings so much joy to our lives to watch her enjoy herself as she plays with Aubree and other kids around her. Really good Extreme Home Makeover tonight on TV that had a 6 year old boy with spina bifida. Hope you got a chance to watch it, the mom made the statement how much joy he brings to them and those around him, Shannon and I have the same feelings with Trinity.

Too Busy?!?!

2010-05-12T16:02:00.002-05:00

Over lunch yesterday with Shannon I had stated that I hadn't posted anything since March, his response was, we probably won't have anybody that reads the blog anymore, but even if there is just one of you that reads this that is okay with me!

Trinity has been a busy little girl and without boring you too much I will try to keep this post as short as I can.

Neurosurgeon:
Things look really good for right now for Trinity. She has no issues that need to be taken care of with the Neurosurgeon. He does want her to see a sleep doctor and hopefully we can get some help with her sleeping, since she wakes up 2-3 times a night! With Chiari they have sleep apnea and Dr. Partington feels that is why she is struggling sleeping. Other then that he feels like she can go 8 months without seeing him, which is HUGE!

Orthopedic Surgeon:
Since the last post Trinity now wears a TLSO (abdomen brace) and AFO (ankle & foot braces). She has some nice new sneakers and loves it when people ask her about her new shoes! So far we are doing really good with the braces. She wears the AFO's most of the day and the TLSO about 6-8hrs. They would like her to get more time in the TLSO, but we are working on that with her vomiting. They have done another x-ray with her in the brace and they didn't see a huge improvement, but they are hoping the more time she spends in it the better the improvement. They would like to try to get her to continue to grow before thinking about surgery. She is still at a 67degree curve and they don't want it to get any worse. So we are crossing our fingers and praying that we can get through a couple more years. We will see the surgeon in August and at that time they will recheck her curve and see where she is at.

Feeding Clinic:
We have finally got into the feeding clinic and things are starting to move in the right direction. Yesterday Trinity had an Upper GI and Swallow Study done. The GI showed that she has some reflux and the swallow study looked really good. We don't know a whole lot until we see the GI doctor in June. They would like us to consider a G-Tube that would be placed into her stomach. This way we could control her eating and know how much she is getting. This is something Shannon and I are considering, but it really is up to the GI doctor and what she feels Trinity needs. She starts some speech and occupational therapy in a couple weeks through Gillette and that could consist of 1-2 visits there a week. This is going to be very time consuming with her other therapy that she gets through the school, but she needs to learn how to eat. It is kinda weird her mom is trying to get thin and she is trying to gain some weight, too bad I can't just give her my weight, now that would be nice!
They also talked about her teeth and the fact that they are turning brown. This is because of the Pediasure and the amounts of sugar that is in it. So we are working with her on brushing her teeth, this is not going real well since she gags when things are in her mouth, so please pray that they gagging would stop and we can make some progress on the teeth brushing. They feel really good about her size and although she is below what other kids her age are at shes at a good weight for her height.

Wheelchair and Stander:
The school is looking into some wheelchairs for Trinity. It will probably not be until August or September when she officially gets one. There is alot of trying and making sure that we find the right one to fit her needs and body type.
She is officially using a stander! This was a big step for her and she has worked her way up to an hour at a time. She can be in it 2-3 times a day. She really enjoys it and she has grown a 1/2 inch since using it!

Things have really been going pretty good with Trintiy. She loves being outside and playing with her sister and the neighbor girls! We are trying to find a tryke for her that she can use her hands, but the price of them are so high. We are hoping the school can get one or we have been looking on Craigslist and Ebay. Daddy got her a helmet last night, so she just needs some wheels!

We are reminded everyday how truly blessed we are! Shannon and I have a great marriage with two beautiful daughters that God has entrusted us with. We are learning to focus more on the beauty and joy of life instead of all the negatives! I received a very special gift on Mother's Day from someone that probably don't realize the gift she gave me. She shared with me that she prays for Trinity everyday and that she recently had a dream with Trinity and Jesus in it. She told me that Jesus is going to do great things with Trinity and she wants to be there to watch. What a great gift! It brought me to tears and gave me so much hope in knowing that God has big plans for our little girl and despite the trials that she faces there is JOY in all of this! Thank you sooo much Cathy Lund, for sharing that with me, it means the world to Shannon and me!

I promise I am going to start updating more and I am going to take some time and put some recent photos of Trinity on her soon!

Appointments/Updates/Birthday

2010-03-09T12:55:00.002-06:00

Time just seems to be flying by lately. It has been two weeks since Trinity turned 2 and I have not been real good about updating the blog, so I apologize. We have been really busy with appointments, therapy, and just life in general!

Trinity turned two on February 21st! She had a fantastic birthday spent with family and friends. We did a ice cream cake this year and she loved it. Because Trinity can't eat solids, ice cream is one thing that she tolerates, she must get that from her dad?!? She got some fantastic toys that I am not sure if her sister plays with them more or if Trinity does. What an amazing two years it has been. Sometimes feels like a roller coaster ride, but I wouldn't have it any other way.

Trinity has had a few appointments lately. We finally got in for her TLSO fitting and she will get that next week Wednesday. I was amazed at how well she looked in just the cast, I can't wait to see her in the brace. This one will be different from her last one. It will be two pieces and should give her more support. They are going to see how well she tolerates it and would like to see her wearing it most of the day and night. Eventually they might look at doing a brace that goes from the armpits down to her knees while she sleeps. We seen Dr. Walker and Dr. Koop (orthopedic surgeons) yesterday. They are going to work as a team on Trinity instead of just having one doctor. Trinity is a very hard and rare case and they feel more comfortable having two opinions instead of one. I will admit it is hard sometimes trusting the opinions of doctors and wondering who you should trust. We have heard so many different opinions on Trinity and her scoliosis that sometimes we are confused by what the plan is next for her. Just to remind you back in July Trinity had a curve of 56 degrees and today in the same position she is at a 67 degree. From history it looks like about every 6 months Trinity is jumping 10 degrees in her curve. With that being said they are going to try the brace and hope that it does the trick of slowing down the curve so we can get a few more years in before having to do a surgery. If they see that the brace is not working they would like to use all the options before doing surgery. Mostly because of the size Trinity is but also because it works better when the kids are older. So it is going to be a waiting and guessing game from here on out with Trinity. They will see her again in about 6 weeks and do another x-ray to see what she looks like in her TLSO and what the curve looks like without it.

On Thursday we will see a PM&R doctor that will evaluate Trinity and see her timeline for a wheelchair, bracing of the legs, and some other things. I am excited to see what this doctor has to say.

We are also waiting to get into the feeding clinic, but for now the school has provided a speech therapist (that also has a medical background) and we love her!! She is going to try and get approved to see Trinity at least twice a week. She will work with her eating and speech. So we are crossing our fingers that this works for Trinity and that Rachel can help us figure out what is going on with Trinity.

On top of all of this Trinity has a ton of evaluations through the schools for her therapy. So things have been really crazy here lately and will be the next couple of weeks.

Sorry for the length of the post, but I had too much to update on. We would really appreciate your prayers and that God would work miracles with the new TLSO. We continue to trust God through all of this and know that His plan for Trinity's life is much better then ours!

Frozen Tundra

2010-02-06T16:52:00.002-06:00

Okay, I am officially sick of winter. We have had enough snow and now I hear that we are going to get more on Monday, UGH! I really need a vacation somewhere warm!!

Other then me hating this weather, things are going really good here. Trinity is staying healthy, crossing fingers, and her eye looks amazing. She still has a little redness, but it has healed very nicely. She don't need to see Dr. P for 3 months.

There is not much new to report. She has a lot of appointments in March and has a hearing test this month. We are still waiting to get her TLSO fitted, kinda frustrating, but I guess if anything over the past two years, I have learned to be patient (with doctors). Hopefully we can get that done this week so she can start wearing it again.

I can't believe it has almost been two years since God blessed us with an amazing little girl. I never knew there would be so many ups and downs, but everyone of them has been a HUGE blessing.

Strabismus Repair

2010-01-29T17:25:00.002-06:00

Trinity had her eye surgery yesterday. Dr. P decided to just do the left eye. She felt that it was the muscle that was the tightest and since Trinity will probably need this surgery in the future because of her spina bifida, she wanted to hold off on the right eye. Trinity did great and all the doctors commented on how strong she is. Her eye is a little red in the corner and swollen, but overall she is doing great and I am very impressed on how well she is doing. She sure is a fighter!!

Thank you for praying for her yesterday, we can always feel your support and prayers. I am very thankful that my parents got to come up yesterday, it is always nice to have family here.
Miranda

Change in Schedule

2010-01-20T17:44:00.003-06:00

Trinity did not have her eye surgery today, it is now scheduled for next Thursday, January 28th @ 11:00am. This will be an out-patient procedure. Until then we are having to dilate her right eye every morning until surgery. After checking her eyes last week they noticed that she is preferring her right eye over her left eye. So until she has they surgery they want her to be using her left eye more. She really don't like this, but since she won't keep a patch on her eye it is the only way.

Lots going on in our lives right now. Trinity had an Orthopedic appointment on Monday. He checked her hips, did an x-ray of her spine, and then checked her spine. Hips: We talked about her hips popping when we are changing her or playing with her legs. He does not feel like it is coming out of the socket, but can feel a little popping. He is not overly concerned with the hips and actually feels that most kids are better off not doing anything (surgery) because it ends up causing more damage then good. He is going to keep an eye on them, but will leave them alone for now. Spine: The x-ray shows that the scoliosis has increased significantly since the last x-ray. They can't really judge though off of the x-rays because of the inconsistency of how they are doing the x-rays. For instance the last time she had an x-ray it showed her curve at 36 degrees, but this time it was at 84 degrees, a HUGE difference. I am not real sure why they don't position her the same way everytime they do an x-ray, but I am not the doctor either. He checked to see how flexible the spine is when positioning her in a more upright position. He feels that it is somewhat soft, but not soft enough to get it completely straight. He wants to revamp her current TLSO (brace) and see how that works. He would also like to try something in her cart that would keep her in a more upright positon, but because that is not our property it is the schools, we are unable to do that. He wants her in the brace as much as she will tolerate, in hopes that she will keep it on all the time including bedtime. He will then recheck her in 6-8 weeks and see how the brace is working. At that time he is going to do a new x-ray with her laying down and see how straight they can get her spine with positioning her. He feels that we are probably looking at some form of surgery (growing rods) in the next 6-18mths. Honestly that is not what we were expecting. We really thought that with the untethering and the hopes that the brace works she would not need a surgery for a couple years. That is not the case. With all of this being said, we also have the problem with Dr. Walker has never done a surgery like this on a child as small as Trinity. Trinity is a very rare case and they don't see children this small needing the surgery at such an early age. He has done it on a 2 1/2 year old and that is the only one in the toddler years. The problem with Trinity is her weight and height. Trinity is very small for her age and they are concerned about doing a surgery on her while she is so small. This brings a lot of concern to Shannon and I. We did not know that he was so inexperienced with this surgery in young children. There is a lot to think about after this appointment. Trinity still needs to be refitted for her brace and we are really hoping that the brace is going to do the trick for awhile and that we can get her a few years down the road before looking at surgery. God is the GREAT PHYSICIAN!!

We could really use your prayers. We really want the brace to solve the problem for now, but if it don't we want to make sure we are putting our daughter into the right hands (what doctor).

Trinity is doing really good otherwise. She still continues to get some form of a cold about every 2-3 weeks. We are ready for this cold season to be over with so she can sleep at night (and mom too)! Too bad we still have about 2 1/2 more months of this stuff :(

Our thoughts and prayers go out to Haiti and all the people that have lost their homes and their family. So much tragedy and loss. It really makes you think about how much we have and how little we really could live without. PRAY

Here is to a New Year!!

2010-01-06T16:36:00.002-06:00

Things are good in the Arthur household. We had a fantastic Christmas spent in Iowa with family and friends. Both the girls got way to many toys, but they are loving their play time together! We were not all that crazy to come home to 16 inches of snow and below 0 temps, but I guess that is what we get when we live in Minnesota.

Trinity is doing pretty good. She got her stitches out before we left for Iowa and her incision looks great! Trinity has a busy month in January with many doctor appointments and yet another surgery. Here is the rundown: Jan. 11th-Eye Doctor, Jan. 18th-Dr. Walker(Orthopedic Surgeon), Jan. 21st-Eye Surgery, and Jan 27th-Eye Doctor checkup. This is what is on the schedule so far, she also has a checkup with the Neurosurgeon sometime this month (when I called to schedule that they told me it would be June, I asked them if they were crazy, they are going to talk to Dr. Partington and get her fit in).

I can't really tell you that I notice any difference in Trinity since the surgery. I am not real sure what we are suppose to see, but hopefully when we meet with Dr. Walker things will start to look up for Trinity. She is playing very well and loving all her new toys. The therapists are very happy with where Trinity is and the development that she has made in the year that they have seen her. We continue to have them come to our house twice a week and Trinity actually looks forward to seeing them!

Aubree started back at preschool and was very excited to see all her friends and teachers. Shannon is busy at work and I am busy being the two best things in the world, a wife and mom! My friend Amanda recently quit her job and is staying home full-time with her daughter Paige, we are looking forward to getting together with them and having some fun play dates.

We hope you all had a blessed Christmas and a Happy New Year!! (Hopefully your resolutions are lasting longer then mine did!)
Love~The Arthur's

Update/Pictures

2009-12-18T17:47:00.004-06:00

Things are going pretty well for Trinity. She was suppose to have a checkup today, but she has a fever and a cold, are you surprised? (we sure aren't) Hopefully it is just a cold and nothing more, but we will see how tonight goes and if she is not better tomorrow we will take her in to see the doctor.

Trinity has amazed us with her recovery from surgery! She's doing GREAT and getting around just fine in her cart. She stopped taking pain relievers after Monday. I haven't got to see her back in almost a week because it still has the bandage on it, but there is no sign of leakage, which is great!

I wanted to post some pictures of Trinity from the hospital stay. One of the pictures is of Trinity in her bed and you can see the tree that she got from the family that donates them to the children in the hospital. We put it in her room and she loves looking at it at night when it is lite up!

Trinity Home

2009-12-15T12:31:00.002-06:00

Trinity got to come home Sunday night. This was very exciting for all of us including Trinity. She loves it when she can sleep in her own bed and be in the comfort of her own home. I would have to say I was also pretty excited to sleep in my own bed! Trinity is doing pretty good, just a little pain here and there, but for the most part she's doing remarkably well.

So much love and support was shown to our family while we were in the hospital. We are very grateful to have such wonderful family and friends. Thank you so much for your prayers during the surgery and Trinity's recovery.

Day #4

2009-12-12T20:04:00.002-06:00

Trinity has had a pretty good day today. At 5:00pm Trinity got to slowly sit up for the first time in 72 hrs. She started out in bed at different levels and then made her way to mommy's lap. It felt like holding her for the first time, really exciting. So far she's showing no signs of any leakage and doing great. She is taking a break right now in bed, but still a pretty happy girl. Last night Shannon and I got to see the incision and it looks great. Dr. Partington did a fantastic job and we are amazed at how clean and good it looks. We are crossing our fingers, but hopefully tomorrow she will get to go home! As long as there is no leakage and things are going good for her we should get to go home.

One final note: GO VIKINGS!!!!!!

Day #3

2009-12-11T19:52:00.002-06:00

Trinity is doing pretty good. Today has been so much better then yesterday. Her headaches have pretty much gone away (we are guessing by the way that she has been acting today) and the pain seems to be getting better. We have had a few issues with some vomiting last night and today. They think it is due to the pain meds that she was on, so we are going to just try Tylenol for now. She's starting to get an appetite back, but it is taking some time. Dr. Walker (Orthopedic Surgeon) came in today to see Trinity. He feels pretty optimistic that if we get Trinity back into a brace after she heals it could help correct her scoliosis. He wants to see her on Monday if we are still in the hospital otherwise we will get an appointment made to see him soon. I pray that it will work so we can avoid surgery again for awhile. We also got to talk to a Dietitian today and found out that Gillette has a feeding clinic (Occupational Therapist, Speech Therapist, and a Dietitian) they will help us with Trinity's eating and her speech. This will be something we will look at doing after the first of the year.

Tomorrow Trinity gets to finally sit up for the first time in 3 days, we are all looking really forward to this! I wish I had a video camera here to show you just how strong Trinity is and how bad she wants out of her bed. She has been grabbing the bars of the side of the bed and pulling her self around the inside of the bed (from side to side). She's so ready to be able to sit up and do things other then just lay flat on her back. Not real sure when she will get to go home, but we are hoping for Sunday?!?!

Trinity got a Christmas Tree in her room today. It is about 1.5 feet tall and is decorated with playdough, cutouts, and some other toys. It has lights on it and decorations. A couple that had a child in the hospital over Christmas donates 35 trees to Gillette for kids that spend time in the hospital during the holiday season. We have it on the end of her crib and have the lights on. I will make sure to post a picture of her with her tree. Just one of the many things that this hospital and volunteers have given to Trintiy. So far she has gotten a tie blanket, baby pillow, and a tag blanket (because she got sick all over her other blankie). The nurses and staff are amazing here. Aubree got to do a craft last night with some other children that are in the hospital. She had a lot of fun doing it. We are very happy with our decision to switch to this hospital!!

Hopefully our next post will say "We are Home"!
Love~Trinity and family

Post-Operation

2009-12-10T16:13:00.002-06:00

Sorry for no update yesterday, but it was a long day and I didn't get to a computer until now. Things are going pretty good. Trinity got out of surgery around 5:00pm yesterday. The surgery went good with no complications. Trinity has to lay flat on her back for 72 hours. Last night this wasn't so bad because of all the pain meds she was on, but today has been a different story. She really wants to get up and especially be held, really hard for those of us that want to just pick her up. She had a long night of pain and many visits by the nurses. Sleep is always minimal in the hospital, but hopefully we can get some better sleep tonight. Dr. Partington checked in on her this morning and checked on her back. It is looking good with minimal drainage (the main reason for keeping her flat). He did say that she probably is having spinal headaches because of the way that she was positioned during surgery and also when you open and close the spine the spinal fluid gets confused as to where it is suppose to go. Because of the headaches she pulls at her hair, covers her eyes, and tosses her head in pain. Not fun to watch your helpless baby girl and not be able to help her.
Trinity was pretty excited to see her big sister today. Aubree and Nana brought her a big balloon and a stuffed snowman. Trinity also got a visit from a golden retriever named Trooper. He put his paws up to the bed and Trinity went nuts, she wanted to get out of the bed so bad and pet him.
I can honestly say that this is one of the BEST hospitals with wonderful staff. It is very comforting to know what great care your child is getting and to also know that there are so many kids with the same thing as Trinity rolling around the halls in their wheelchairs and walkers.
Trinity could use your prayers tonight and the days to come as it is going to get harder for her to want to lay flat. Also prayers that her headache and pain would diminish would also be appreciated.
Love~Trinity and family

Surgery

2009-12-09T10:08:00.002-06:00

We are currently at the hospital waiting to be admitted for surgery. We had to be here this morning @ 8:30 so Trinity could have a CMG and a ultrasound of her bladder before surgery. The CMG went good, but we won't know anything for sure until the urologist reviews it. The surgery is scheduled to start @ 11:45 and it is suppose to be about 3hrs long. Please keep her in your prayers and all the doctors and nurses. Aubree is staying with our friends, Amanda and Stephan today so I am sure she is enjoying herself! We will probably update later this afternoon when Trinity gets settled into her room.

Untether

2009-11-10T12:42:00.002-06:00

I should have updated about a week ago, but I wanted to wait to hear for sure what the date is going to be for Trinity's surgery. On December 9th Trinity is going to go to Gillette and have her spine untethered. This is about a 2-3hr surgery where they will go in and remove the spine from the skin and he will also do a shunt tap to confirm function of the shunt.

There was an MRI done on Oct. 29th. They looked at her Chiari, spinal cord, and repair region. We talked about Trinity's vomiting of which has not improved. Dr. Partington feels that it is most likely related to the Chiari, and that it generally does not respond to surgery. Basically this is going to be a part of her life and hopefully as she grows she will grow out of it. Our main concern is her weight and that she as been at 16lbs since January of this year. So we are praying that we start to see some weight gain, soon! On the MRI the Chiari decompression area looks good, with visible spinal fluid around the brain stem. They see the tethering at the repair site of which was no surprise. Because of the progressive scoliosis he would like to get her untethered soon.

Trinity will go in on Dec. 9th and the minimum stay is 3.5 days and before she can leave she needs to be able to sit in her chair comfortably. While she is in the hospital she will also see the Orthopedic Surgeon. He will determine where we go from there on her scoliosis.

Trinity has had a cold now for almost a month. It just seems to come and go and we can not get rid of it. Hopefully we can keep her healthy around the time of the surgery. I hate the thought of her being in a hospital this time of year with all the different illnesses going around, but we really don't have much of an option. I know that God is on our side and he will be her protective shield.

One more note for all of you that spend time with Trinity. Sometimes you will see that when a loud noise is made Trinity will either cry or cover her ears and face. This is because of her Chiari. The doctor put it in these words, Trinity basically has a 24/7 hangover. Loud noises hurt her ears and loud sounds are really muffled and make a ringing in her ears. So if you are ever around her please remember how she feels when there are loud noises. I can't imagine how that must feel for her.

We always appreciate your prayers. Trinity is such a beautiful, rare gem! She makes my heart melt and has shown me so much strength. She has a huge heart with a will to do "great" things. When you watch her during therapy you can see the determination that she has and you know that she is going to go really far in and achieve many things.

Update

2009-10-19T16:36:00.003-05:00

Just wanted to make sure that you are praying for Miss Trinity. We have an MRI on Wednesday. Currently Trinity has a cold and if it gets any worse they will not do the MRI, so please pray that she would get better and that this would not settle into her lungs. It took us almost 2 months to get this MRI so I really don't want her to not be able to have it.

We also seen Trinity's Pediatrician today. She has not gained any weight yet after being on Pediasure for almost 3 weeks. They also put her on Prevacid just to see if it would help with the vomiting and it has not helped. Hopefully the more she drinks of the Pediasure we will start to see higher numbers on the scale. He also had some blood work done and a urine test. I have noticed a fowl smell in her urine and was concerned that she might have a UTI, but it came back normal. He also wrote a prescription in hopes that when Trinity goes to Gillette on Wednesday they will have the H1N1 vaccine and be able to give it to her, so please cross your fingers for that!

Shannon and I wanted to give a BIG "THANK YOU" to those of you that save your tabs. The next time I drop off the tabs I am going to take a picture of all of them. I can't believe the number of tabs we get from all of you. It is truly amazing and I know that every child it helps put in a wheelchair appreciates it also. Thank you sooooo very much!

Many New Updates!

2009-09-28T13:09:00.002-05:00

Life is getting busy around the Arthur household. Aubree started preschool two weeks ago and LOVES it and Trinity is back in therapy twice a week. Things are starting to get busy, but it is a good busy. There is a lot to update on so please bare with me as this is going to be a long post.

Eyes:A couple weeks ago we seen Trinity's eye doctor Dr. P. Trinity's eyes have not gotten any better and she feels that it is necessary to do a strabismus surgery. Basically they will go in and straighten out the eye muscles. Shannon and I are waiting to schedule this based on some other things that are going on with Trinity right now. Dr. P said it is a simple surgery that would be out patient (a good thing).

New Neurosurgeon: A little over a week ago we finally got in to see Dr. Partington (Neurosurgeon at Gillette Children's). You might remember his name because we seen him at Shriners a couple times. He wanted to have a CT scan done and then also an shunt series x-ray. Both of these looked good and her ventricles are small. The problem with finding out if the shunt is working 100% is that CT scans and x-rays are not always accurate and the only way to be 100% is for them to tap the shunt (surgery) and make sure. Dr. Partington really wants to rule out the shunt first because it could be causing the increase in scoliosis, vomiting, and the crossing of the eyes. I am a little sceptical of this, just because she just had a revision done in April and nothing has changed since then. Now if he goes in and sees that the shunt is working fine then he will probably go to her spine and un-tether it (separate it from the skin).

Before any of this happens there will be an MRI done of her entire spine. This is currently scheduled for October 21st. I wish it was sooner, but from the sounds of it it is hard to get into anything in this hospital early. For now he has turned down the shunt from a 1.0 to a .5 to see if it will impact the vomiting or the curve. Unfortunately I have not seen any improvement in the vomiting. So basically from now until October 21st we are in a waiting period.

Feelings: I would like to express my feelings on this post, because I want everyone to understand how hard this is for a parent. Trinity has been at the same weight for 10mths. We struggle daily with her vomiting, gagging on foods, and sometimes just refusing to eat. I have waited already 2 months for an answer on her scoliosis and the tethered spine to only get a response of waiting another month. I don't know if you watched Grey's Anatomy on Thursday night, but the mother that was on there with her son fits how I am feeling pretty well. I am frustrated and sick of getting the runaround from doctors. THIS IS OUR DAUGHTER, HER LIFE, and OUR FAMILY. I feel out of control and helpless. Shannon and I want the absolute best for Trinity and that is why we chose Gillette. We feel that she can get the best care there. Dr. Stealey(Trinity's Pediatrician) has been great! I just wish all doctors were more like him.

The therapist continue to find equipment to meet the needs of Trinity. Today her PT brought some shorts that she can wear when we are working with her. They help keep her legs stay together and help keep the hips in place. She wore them for awhile today and she did a great job. She really is a strong little girl with a lot of determination!!

I know there is a lot that I am missing on this post, but sometimes my head starts to hurt just thinking about everything. We appreciate all of your support and that you take the time to check in on Trinity!

Pictures!!

2009-08-25T21:07:00.003-05:00

We got an appointment scheduled for September 3rd to see a GI doctor in St. Paul and I am still waiting to hear back from Neurosurgery to see what the plans are for Trinity and her scoliosis.

I really wanted to share pictures with you that I took over the summer. I hope you enjoy!!

Trinity at the State Fair, she loved the cows!!

My Dad and Trinity standing in front of the case with the Shriners hats.

This was Trinity's first time swimming in the water!!

She was loving it!!

Update

2009-08-21T10:26:00.002-05:00

Well there hasn't been a lot to update about since we STILL haven't heard anything from the doctors. It has been 4 weeks and still no news. I am starting to get frustrated and wondering what the delay is.

On Monday we seen Trinity's new Pediatrician, Dr. Stealey. It was GREAT!! I felt so energized when I left there and felt so confident that someone was finally going to look out for the best interest of Trinity! He didn't get a chance to review all of her records, but on Tuesday and Wednesday he did and gave Shannon a call yesterday. He has talked to one of the BEST Ortho Pediatric Surgeons in the Metro and he said that he would be willing to see Trinity and look at her case. He is with Gillette Children's Hospital, of which we are switching all of Trinity's care to. We think Dr. Haines is a great Neurosurgeon, but we feel like Gillette is the best place for Trinity to get the BEST care. We have had so many people talk to us about how great it is there and you won't find a better hospital that can meet the needs of Trinity. I am really excited about this and pray that the transition goes smoothly.

Trinity is still not gaining much weight so Dr. Stealey is working on that and going to talk with other doctors to see what the next step should be. He also talked to Trinity's Urologist, of which he stated is also one of the best in the Metro area! We are currently doing more Mira Lax a day to help increase Trinity's bowel movements. So far it is working great, but she is getting horrible diaper rash :(

I wish I had more to report, but I pray that by Monday we hear something and know the next steps that are going to be taken with Trinity. We will be sure to keep you all posted.

Shriners & Swallow Study

2009-07-27T10:32:00.002-05:00

On Friday Trinity had an appointment at Shriners in the morning. We were scheduled to have an x-ray and then she was going to be seen by the Orthopedic Surgeon and the Neurologist, things kinda changed after the O.S. seen her x-ray. If you remember back to April Trinity's x-ray showed that her scoliosis had gone from a 38 degree curve to a 45 degree curve. Well this visit it has gone to a 50 degree curve. For a child that is 17 months old this is not a good thing to see, especially since her curve has gotten 12 degrees worse since January. We tried the TLSO, but because of her vomiting she don't get to wear it very often. So the O.S. called the Chief of Staff @ Shriners which is also the Spine Dr. He took a look at Trinity's x-rays and evaluated her. He told me that if I had called him over the phone and told him that Trinity had a 50 degree curve, he said he would have told me it is time for growing rods. But because he now knows Trinity's situation they are looking at MRI's that she has had done to see what her spine looks like and to see if she has a severe tethered spine (where the spine connects to the skin). This could cause her scoliosis to get worse in such a short time. If there is a severe tethered spine then they will have to go in and separate the skin from the spine. After that is done we need to get her vomiting under control and get her brace back on her, but inevitably Trinity will have growing rods and a lot sooner then later. This was very difficult news for us. A growing rod has to be adjusted twice a year and they have them until they are through their growing years. After that they go in and try to straighten the spine. This is overwhelming for all of us. We have a lot of decisions to make and need to start thinking of Trinity's care and the doctors that she sees. I got to meet another Neurosurgeon @ Shriners that I felt very comfortable with and he is located at Gillette Hospital. We pretty much found out that we are at the wrong hospital (U of M, Fairview) and need to be thinking about switching to Gillette. Not because the U of M is bad, but Gillette specializes in Spina Bifida, so they deal with Trinity's situation on a daily basis. Many doctors came in and seen Trinity trying to figure out what is going on, but we are kinda at a stand still until they see and discuss the MRI with Dr. Haines. The PT/OT got to see her in her new wheels and they were very impressed with that. We discussed a wheelchair, but it is something that they want to wait on until she is 2 1/2 or 3. Shannon and I were trying to push it since we have already met our out of pocket for the year, but according to Shriners if our insurance don't pay for all of it or none at all the Women's Auxiliary club will (why we do that can tabs!). This was great news!

In the afternoon she had her swallow study done at the U of M. They have her drink some chalky stuff and watch her swallow it through an x-ray (very neat to watch this). They also fed her some stuff that was somewhat thick and see how she swallowed that. She did a great job and they don't feel like she has any difficulty swallowing. She has an immature mouth for her age (about a 6 month old) so we need to work on this and train her mouth with different foods. So we are still not sure why she is vomiting, but we are going to make an appointment with a GI doctor at the U of M. We will let you know when we have that appointment and how it goes.

I know this is a long post and I hope you understand it too. There is so much to tell you about Friday, but I honestly have such a hard time typing all of it. Friday was a very long and emotional day for all of us. I am constantly trying to figure out the "Why's" and I never get any answers. The doctor told me that things are going to get better for Trinity, sometimes it just takes awhile to get through all the road blocks. I appreciate his confidence, but it still don't help the emotions I feel for our little girl and all the things that she has had to go through lately and the things she will face in the future. We need prayer and lots of it. We have a lot of decisions to make and we don't want our emotions to get in the way of making the right ones. We only want what is best for our little girl.

Trinity's Caster Cart

2009-07-22T10:23:00.003-05:00

Trinity wheeling herself around on the caster cart

Trinity is all smiles when she gets to have the freedom to go where she wants and get the things she wants!

This is the first day in the caster cart!

Last week Trinity was introduced to her Caster Cart. Trinity's therapist really didn't expect much out of Trinity when he put her in it, but within minutes she started pushing the wheels and moving herself around. The caster cart is used to teach children how to use wheelchairs. I have not seen her this happy in a long time. She smiles when she moves and she is moving to get things that she wants. It is such an awesome thing to watch. It is like watching a child take their first steps! It was a bittersweet moment for Shannon and I, it makes you sob when you see her do it. I can't wait for the things to come for Trinity and the freedom that she is going to feel.

On Friday Trinity has a visit at Shriners. She will see the Orthopedic Surgeon and they are going to do some x-rays to look at how her scoliosis is doing. We head to the UofM in the afternoon for her swallow study. Please pray for Trinity and the doctors so we can figure out what is going on and get her to start gaining some weight.

No Title :(

2009-07-10T15:14:00.002-05:00

Sorry, I get sick of trying to come up with a title so I decided to name this one "No Title", seems appropriate.

There really is not a lot to report. We are still having a lot of issues with Trinity vomiting. Last week on Tuesday, Trinity and I spent the afternoon in the ER. Trinity was having some vomiting and was very lethargic. They did a CAT scan, blood work, and a urine sample. Everything came back good and she did not show any signs of a UTI. Her shunt also looked good, so we left there with still no answers as to why she continues to vomit. This week we finally got the Pediatrician to get a swallow study scheduled with the UofM. Unfortunately they can not get her in until the 24th. To Shannon and I this is a long time to wait, considering the amount that Trinity vomits in a weeks time. It breaks our hearts to have to watch her go through this and not be able to do a thing for her. We feel so helpless and wish we had answers. But she is such a trooper and always has a smile at the end of it all!

On the 24th Trinity will also be seen at Shriners and they will look at her Scoliosis again with an x-ray. Trinity has not been able to wear her TLSO for almost a month now. This has been frustrating, but the right thing to do since it does not help with the vomiting and only makes it worse for her. So hopefully on the 24th we will get some answers and hopefully her Scoliosis has not gotten any worse.

Trinity really enjoys being outside with her big sister! As long as the temperature is not to hot and there is somewhat of a breeze. She's doing amazing in physical therapy and is trying so hard during her sessions even though you can tell she don't want to do it. With the support of her arms Trinity is sitting on her own for almost 2-3 minutes. This is progress!

I am sorry for the delays in posting sometimes, but things are getting busier for us the older Trinity gets. I would like to try to update you at least every week, but sometimes that is not possible. Please know that we still appreciate your prayers as Trinity continues to grow and prayers that we would find out the cause for her vomiting.

We hope you all have a fantastic weekend!

MRI

2009-06-20T16:22:00.003-05:00

Trinity is doing pretty good. She had an MRI on Wednesday to look at her Chiari and Shunt. Everything looks pretty good. She has a lot of scar tissue, but there is really nothing they can do about that. We also had to discuss the problem with getting an IV started in Trinity. Everytime she has to have an IV they have a terrible time getting one in and for the MRI she had to be sedated so they had to do an IV, well after the 4th poke and getting the manager to do it they finally got it. I discussed this problem with some of the nurses and the anesthesiologist and they wanted me to discuss this with the Neurosurgeon and talk about some options. There really are only two other options and the one will not work for Trinity because of her low muscle use in her rectum, so the other option is a port. Dr. Haines said that it will probably be an option if she has to have another surgery. So we are praying that things will change for Trinity and they won't have such a difficult time, but they told us that the older she gets the harder it will probably be. Her shunt is working like it should, and I love the new valve, because it is so much easier for them to reprogram after an MRI.

We are going to make contact with her pediatrician this week and get a swallow study done soon. Trinity is still not gaining weight and Dr. Haines even mentioned this at her last appointment. We also have a call into the Orthopedic Surgeon because of her brace. Trinity is suppose to be wearing it at all times except when she eats and sleeps, well for those of you that know Trinity she sleeps at least 4hrs during they day and about 13hrs at night, so that leaves her about 7 hrs, but because she can't wear it while she eats that takes away another 3hrs because we have to give her time to get the food digested and settled into her stomach. Well when you really add it up she is only getting at the most 4hrs in the brace, if that. We have also been having issues with her vomiting while having it on. So we are trying to figure out something that will work for Trintiy. It has been a week now without wearing it and that makes Shannon and I nervous, the last thing we want is for Trinity to have surgery earlier then we wanted to help correct the scoliosis. Hopefully they will get something figured out soon so we can get her back into it.

She hasn't had much PT lately because of the summer hours, but I try to fit them in a couple times a week and any activity for Trinity is PT.

The girls and I get to head back to Iowa on Monday and are really looking forward to spending a week with some family and friends. Shannon will be coming on Friday and then riding in the Poker Run for Stella Turnbull. If you remember last year Co-Line had a Poker Run for Trinity and this year it is for our "great" friends daughter Stella. All the proceeds will go to help her get wheelchair/van. If you live in the Lynnville area or surrounding communities please come join in raising money for such a special little girl! Here is her website with all the details http://www.caringbridge.org/visit/stellaturnbullturnbull

Have a great weekend!

Pneumonia and PT

2009-06-06T10:08:00.003-05:00

Last week we made an unexpected ER visit with Trinity. She had a really nasty cough for over a week and I took her to the doctor to find that she had viral pneumonia, they wanted her to go on to the ER to make sure that a good x-ray was done and to look her over really good. They did determine that it was viral pneumonia and they sent us home with a nebulizer to give her treatments every 4hrs. In the last 2 days she has finally been getting over her cold and starting to act more like Trinity. Now Aubree is sick, I swear we don't get many breaks around here!

It has been a good week for Trinity. We had PT on Thursday and she did great!! We sat her in a sitting position and while leaning on her right arm she sat all by herself for 1 minute and 15 seconds, this is a record!! She also layed on her belly and pushed herself up on her arms with no help from anyone. This made my day and pretty much my week. The physical therapist was very impressed with how well she did, especially after having pneumonia. She's getting such a personality and it is so much fun to watch. A big hurdle we are trying to get over is the eating problem. She still can't eat any table foods without vomiting, so I am waiting to hear back from Shriners to see if they will do the swallow study or if our pediatrician should order it. We need to get something figured out so the girl can start eating some fun foods and gain some weight! I looked at Aubree's medical records from when she was born and I compared them with Trinity's I got quite a laugh out of it. When Aubree was 15 months old (like Trinity is now) she weighed 28lbs, Trinity only weighs 17lbs, how funny is that! So you can see now why Trinity can not fit into most of Aubree's clothes that she wore when she was 15mths old! I love it though, Aubree and Trinity are so different in so many ways and I love that God chose Shannon and I to be there earthly parents. They both bring so much joy to our lives!

We are having a rainy day here, but it is desperately needed. I have a great neighbor that I and the girls have grown to love! They have 3 girls all under the age of 4 and Aubree loves playing with them. We are going to take them to a indoor playground and let them get rid of some energy today. :-)

Hope you all have a fantastic week!

Many New Updates!!

2009-05-28T09:25:00.002-05:00

I want to apologize for not updating about 2 weeks ago, but it seems like things have been busy here and the blog seems to take last place.

Trinity is doing really good. She got her brace 2 weeks ago at Shriners and she has been doing pretty good with it. She definitely has her times when she gets upset and irritated with it, but we have been trying to give her breaks throughout the day so she don't end up hating it. She has to wear it on the outside of her clothes or we have to put a onezie on under it, to make sure to protect her skin. Before the TLSO Trinity got hot real easy and now with this it is about 10 times worse. But we will figure something out for the summer to help keep her cool.

She has also been seen by the eye doctor recently. Trinity had many different tests done to her eyes and they basically came up with that she has issues with being cross eyed. This is probably due to the pressure that was put on her brain causing the muscles of the eyes to have pressure put on them. So for the next 4 months we are going to do eye patches everyday, for 2 hours, alternating eyes. She really don't seem to mind this and we usually do it during her most awake times. She will be seen again in September where they will decide on whether or not to correct the crossing by going in and straightening out the muscles of the eye. She don't show a need for glasses right now, but that is something will check on after the crossing has been fixed. We really have to focus on the eye problem, because when kids are cross eyed they will begin to choose one eye over the other, and then stop using that eye at all, which can make the eye go blind. So we really don't want that.

We were suppose to have an MRI done yesterday, but because Trinity has a really bad cold they felt it would be too risky to put her under for that long, so we had to reschedule. I was really looking forward to this MRI so we could see how the brainstem was looking and to look at the spinal cord and see if there was any tethering. But I guess we will have to wait until the 17th.

We really enjoyed our month of May. We got to go back to Iowa for Mother's Day and some graduation parties. This last week Shannon took the girls back to Iowa for a little vacation and I went to Laguna Beach, California with two of my girlfriends, Amanda and Caprice. We had a great time and it was so relaxing!!

There are many prayers needed all around. At night Shannon and I pray with the girls and it seems like we are always adding someone new to our prayer list. Please add the following people to your prayers: LeAnn Hasley, Arvin DeCook, Mike Lind, Trinity (her nasty cold), all the kids that are sick with an illness inside the hospitals, and my friend Amanda's sister-in-law Heather. I am sure there are more, so if you need prayer or no of someone that does, please comment on this post I will be sure to add them. That is what I love about this blog, everytime I put a need on here I know someone is going to help in praying for it! Thanks to all of you that take them time to pray for those in need.

Have a great week and I promise I will start updating more!!
**I will also be posting some new pics of Trinity real soon!!

Scoliosis & TLSO

2009-05-05T13:37:00.002-05:00

Last Tuesday we went to Shriners to have Trinity seen by the Orthopedic Surgeon. Before he seen her he had an x-ray taken to look at Trinity's hips and her scoliosis. He found that her scoliosis had gone from a 38 degree curvature to 46 degrees. With that being said he felt that it was necessary to put Trinity in a TLSO (abdominal brace) to prevent the curvature from getting any worse. She will wear the brace everyday except when she eats and sleeps. The brace will have to be worn until she is old enough to do surgery and put rods in to help straighten out the curvature. The surgery would probably be done sometime in her early teens, unless the curvature gets worse and then they would look at doing something else which would involve a surgery every 6 months. So we are hoping that this works and keeps it from getting any worse. She will get her brace next Wednesday at Shriners. I took some pictures of them forming her for the brace. I will try to put them on later this week or next week when I post some with her new brace.

This will be a hard transition for Trinity and the family. I look at what all she has gone through so far and I know that this will probably be minor in HER eyes! I am so grateful that the brace will be of no cost to us because we are having it done at Shriners. It takes such a burden off of our shoulders when we know that we don't have to worry about the expense of the brace, especially since she will need one everytime she grows out of the old one.

Trinity's PT also brought over a new high chair that will work with her chair from Shriners. This way she can sit at the table with us while we eat and she can play at the table. She really enjoys this!

PRAISE: Trinity has not vomited in over a week!!! We are praying that the problem has been fixed or maybe God (the GREAT physician) performed a miracle!

????

2009-04-26T16:15:00.002-05:00

I didn't know what to put in the title so I just put ? marks. Well I am sure you already know, but we did come home and are very happy to be here! Trinity has had a pretty good week other then she vomited Wednesday night and Thursday morning. She also had diarrhea this week too, but never ran a fever so I wasn't overly concerned. We kinda don't know what to think at this point, did the shunt revision work?... or did it not? Dr. Haines would like to wait about 3 weeks before we proceed with anything else. At that time they will do a shunt series x-ray and an MRI of the head and spine. Then after we do this we will go from there and see if we need to start looking at her upper and lower GI. I also need to make an eye appointment this week to have her eyes checked. I am going to stop right here and just explode for a minute or maybe an hour!!

When your child goes through 8 surgeries, many days in the hospital, many doctor appointments, many needle pokes, physical therapy twice a week, did I say many doctor appointments, can't eat like a child at her age should, has lost weight and can't gain any back, you start to wonder "WHEN" do things start to look UP for Trinity? It is frustrating!!! I don't complain to much on this blog, but I have discovered that this blog is what helps me get through all of this along with the strength and grace of God! So if you don't want to hear me complain then I suggest you don't read my blog.

I remember the day when Aubree was a baby and would get her vaccine shots. I remember thinking how horrible it was and how I couldn't wait for the day that she didn't have to have those horrible things done every couple months. Now I have a 14 month old, STRONG child that has been poked more then I can count, along with all the other things I listed above. As we left the hospital this week one of the nurses made a comment "hopefully this is your last visit here Trinity" and my reply was "we hope that everytime, but unfortunately we end up here again and again". Trinity cries at the sight of her doctors, it is almost like she knows what is to come and that absolutely breaks my heart. Now I have to have her eyes checked and for most people that seems like a minor task, but to me it seems HUGE. Everytime I take Trinity to get checked by doctors I always walk out with bad news. My daughter will possibly not walk and if she does it will be a long time before she gets the strength to. So for me by taking her to the eye doctor I have a fear that we will add one more disability to the list and she will need glasses to help her see better. "I DON'T WANT TO HEAR THAT!!" But I know I have to take her because the Neurosurgeon says so and her PT says that she needs to be seen also.

Please don't feel sorry for me, but for Trinity. I don't want pity I just want prayer! I am angry, frustrated, and MAD! Why my beautiful daughter? I will tell you what I don't want to hear right now, "Because God has a GREAT plan for her". Why does Trinity have to be used to benefit other people? Put your child in Trinity's shoes for just a minute. Think of all the wonderful things your kids have experienced and got to do. Now imagine how their life would be if your child was Trinity. It sucks and it is hard! I always tell myself that there is someone that has it worse then us, but I still find myself frustrated because I am still living this everyday. Don't get me wrong, I LOVE and TRUST God and his plan for Trinity, but sometimes I just get to a BREAKING point and want to scream! Maybe I should get a punching bag?!?!

Okay enough with this post I am done complaining and whining.

Aubree is finally back home and we are so happy to be together again!! We need to detox her of all the sugar she ate at both grandparent's! Have a great week and I will try to update you all more as we have some appointments this week.

Post Surgery

2009-04-21T11:34:00.004-05:00

I don't have much new to report. Trinity's surgery went great. The only not so great part about it is that the shunt was working fine, so it is not the problem. They did replace the valve. They said that the one that she had was an adult size one and so they replaced it with a smaller one. She has a larger incision and they moved it more behind her ear so it won't bother her in the future. She's doing pretty good, but is heavily medicated. They just got done doing a chest x-ray to see if she has fluid in her lungs. She has been getting really raspy in her chest and they are a little concerned because she vomited last night and they are afraid she may have sucked some of it back into her lungs. Hopefully we will know something soon. If that comes back fine then we should get to go home this afternoon. She has been such a trooper like always.

So you are probably asking what the plan is from here? Good question, I talked to one of the residents (because you never talk to the actual doctor around here) he said he was going to talk to Dr. Haines about what should be done next. I am not real sure who's court this is in now, but we will find an answer as to why she has been vomiting. I will say that over the last 4 days she has been doing really good with keeping things down, so maybe the GREAT Physician is already working and we don't need any answers! I will keep you posted with what the plans are.

Sorry we don't have any pictures, but I still don't have a camera and Shannon is hopefully going to bring me one today! Please keep Trinity in your prayers as she recovers and as we find answers for why she is vomiting and losing weight.

Updated:
Trinity will be staying overnight tonight in the hospital. They want to watch her and just make sure that the raspy noise that they are hearing starts to clear up. Her chest x-ray looks good so they are not overly concerned, but want to be safe, rather then sorry!

Surgery on Monday

2009-04-19T10:00:00.002-05:00

Hello to all! Well you can tell by the title that I don't have real good news. Trinity will be having a shunt revision done on Monday morning by Dr. Haines.

On Thursday night I was feeding Trinity a bottle and after eating it she sat up to burp and vomited and vomited and VOMITED. It was everywhere including her, me and the chair. Then on Friday morning she ate a bottle again and do I have to say it, yes she vomited AGAIN! :( So I got on the phone with our neurosurgeon's office and they had us come in to do a CAT scan. I really don't know how to explain the rest of this so bare with me it is kinda confusing. The CAT scan really didn't show us anything to be concerned about. Her ventricles look good and there is no fluid around the brain that is of concern, but they are concerned that there could be fluid collecting down by where her opening was and we just can't see it. Dr. Haines feels that it is necessary to go in and revise her shunt. In fact he wants to replace the whole thing with a totally new kind of shunt. So the question is, will this fix the problem of her vomiting? Well we don't really know the answer to that question. We are praying that it does, but for now Dr. Haines wants to start with the shunt and go from there. At this point of all the variables that could be causing Trinity to vomit, this is the most probable. The next area of concern beyond her shunt is her upper and lower GI track. While it doesn't feel good to have to have surgery based on probability, her shunt would be a much easier fix to the problem.

Surgery starts at 9:30 and we have to be there at 7:30 am. We are blessed to have such a great family that will keep Aubree for us. She is going to be staying in Iowa for the week so we don't have to worry about finding a place for her. Please keep Trinity and our family in your prayers on Monday.

Shriners Visit and Easter Weekend

2009-04-13T15:04:00.004-05:00

On Friday we had our visit at Shriners where Trinity was seen by the Neurosurgeon and the Urologist. I will start with the good news that we have been able to take Trinity off of the antibiotic that she has been on to prevent urinary tract infections. They did a Urodynamic test on her. Most urodynamic testing focuses on the bladder’s ability to empty steadily and completely. Unfortunately the test was not completely accurate because it is very difficult to keep an infant from moving during the test, but the doctor felt like with this test and the ultrasound they did back in January, that Trinity has no issues right now with urinating and they will retest her in 6 months.

As for the Neurosurgeon, we are still up in the air on what is going on with Trinity. Over the past 2 weeks we have had some issues with Trinity vomiting. It can be everday or everyother. She has been losing weight also of which raises a red flag to the doctors. It could be a number of things going on so they need to talk with Trinity's regular Neurosurgeon (Dr. Haines) and see what he thinks. As of now Trinity has an MRI on the 22nd, but they would like to get it done sooner if at all possible. They also want to do a swallow study to see if it could be reflux, have her eyes checked to see if it could be her eyes, and do an x-ray to check her vocal cords. It could also be the brainstem causing these problems or her shunt. So I really can't tell you a lot other then we are just waiting on the doctors to decide what to do next. I know it is hard to tell from the pictures, but Trinity has lost some weight ever since her last surgery. I can tell when I put her diapers on and when she wears some of her 12mth clothes. Please pray for Trinity and that the doctors would be able to figure out what is going on.

Aubree and Trinity in their Easter dresses!!

We had a "Great" Easter weekend together as a family!! I don't know if you remember but last year we spent it in the hospital and Aubree was in Iowa. It was really nice here this weekend so we got to spend a lot of time outside. We took the girls to the park on Saturday and Trinity got to swing on the swings for the first time (of course we had to hold her), but she smiled the whole time!! We went to church Sunday morning, and never thought I would see the day where I was in a congregation of about 1100 people for just one service. Did I mention there were 7 different services?!? After church we had the pleasure of joining our landlord and his family for lunch. Aubree enjoyed playing with all the kids and I am pretty sure all the kids enjoyed Aubree!!

Hope you all had a blessed Easter weekend!!

"We Appreciate You"

2009-04-01T11:04:00.004-05:00

Trinty in her corner chair from Early Childhood

A couple weeks ago I had the pleasure of paying off our last hospital/doctor bill from 2008. As I was writing out the check I thought how this would not have been possible if we didn't have such GREAT people that have supported us financially. I know we say "Thank You" a lot, but we really mean it! We would be burdened with a huge amount of debt if people hadn't stepped up to the plate to help us out. Everyday I am reminded of what wonderful people there are that are praying for and supporting our little girl. Now that Trinity is one I find myself reflecting back to a year ago and thinking of what we were doing on that day, and sometimes I really don't like to think about it. But I am ever so grateful for the wonderful doctors and nurses that took care of our baby and helped her get to where she is today. I miss Dr. Gilmer soooo much, but I know that the move to Minnesota is what was best for our family.

The hospital is not a fun place to spend with your little ones and everyday as I read the blog "My Charming Kids" I think of how crappy it is and emotional when you don't know "why" this is happening to your little angel. Please lift this family up in your prayers and visit there blog when you have time www.mycharmingkids.blogspot.com The mother of Stellan is such a real person in all of her posts. She is not hiding her feelings and I thank her for that, because it makes it easier for us that do to start opening up. When you see her latest post and the video that she made, trust me, you better have some tissues laying close by.

Thanks for checking in on us! As I am writing this we are getting snow, not really what I wanted to see on April 1st.

Trinity and Shaye (or as Aubree says Shaye Bear!)

Physical Therapy

2009-03-19T15:52:00.003-05:00

I know it has been a long time since we last updated you. Trinity has been a busy little girl with doing her PT twice a week. She has been such a trooper and doing a great job! They are mostly working on her upper body strength and getting her to build those muscles so she can roll and sit. She tends to cry the whole time (which is an hour), but I am trying really hard to allow her to cry and be strong for the both of us. I never knew it would be so hard to push your child, but it is and I don't think it will ever get any easier. Today they really pushed Trinity and did a number of different things with her. They have a variety of things that help her, like a wedge, corner chair, tube, and some other things that I am struggling to come up with a name for them. Last week I sat her in the corner chair (that has a tray so she can play with toys) and put her next to Aubree while she was playing with her barbies. Aubree put some of her barbies on Trinity's tray and they played together for about an hour. It was the cutest thing and made my day!! I wish I could take pictures for you, but we need to go buy a new camera, so hopefully I will have some pics up for you soon.

Yesterday was also a milestone for Trinity. We bought her a big girl car seat! I know some of you are thinking what is the big deal, but trust me this is a BIG deal. We have been struggling on what we were going to do when Trinity grew out of the infant car seat, but yesterday during our trip to Target I decided to put Trinity in the shopping cart sitting up and then strapping her in. I wish I would have had a video camera with me so you all could have seen the expression on her face. She loved it!! I took a picture with my phone camera and I am trying to figure out how to get it on my computer so when I do I will make sure to post it, but it was the cutest thing! I also found at Target a shopping cart cover so Trinity can sit in that and then there are straps that will go over her shoulders and around her tummy, I haven't tried it yet, but I am praying that it will work. It was a great day for me because it means that Trinity is getting stronger and that we are moving in the right direction (for once). We haven't got to try the car seat yet, but when we make our 4 1/2hr trip back to Iowa tomorrow she will get plenty of time in it. Aubree is really looking forward to it, she thinks that they will be able to play with eachother.

We don't have a lot coming up. Trinity has an appointment at Shriners on April 10th and then an MRI on the 22nd. She will continue her PT twice a week when we get back from Iowa. I ask that you would continue to keep Trinity in your prayers. Everyday is a struggle for her and for us as a family. Your prayers help us be lifted up everyday!

When is Spring?

2009-03-03T09:57:00.005-06:00

I ask the question "When is Spring?" because once again Trinity has a really bad cold. It started last week Tuesday and Shannon and I thought that we would let her try to fight it off, but unfortunately it only got worst. On Monday I took her into the Pediatrician to find that she has a slight case of pneumonia. Basically when Trinity gets a cold it is going to be very hard for her to fight it off because she has such a severe case of scoliosis. With scoliosis it is hard for them to get enough air into their lungs to fight off the infections. When they did the x-ray on her lungs they found some spots on them so they are putting her on an antibiotic and we are doing some breathing treatments. So I guess until Trinity gets the scoliosis repaired she will always have a hard time with colds. We are doing some checking to see if Shriners can provide us with a nebulizer otherwise we will probably have to purchase one, since Trinity will always struggle with colds.

I know I haven't updated in a while about Trinity so I am going to backup a couple weeks. Trinity was accepted into the Minnetonka school district for Early Childhood Intervention. They will be doing her PT and OT. The great thing about this is that they come to our house to work with her and they also work with Aubree so she can learn how to interact with Trinity. Today was her first official therapy with OT and it went great. They watched her eat some baby food and a bottle. They also brought what is called a corner chair that has a tray so Trinity can play with toys sitting up and they are at a level that she can reach them. She did a great job in this, especially since she is sick. They were very impressed with how Trinity was doing and they have so many different ideas. It really makes me excited! Hopefully soon we can have her sitting up on her own so she can have some independence! The Physical Therapist comes on Thursday morning and that will be our first time meeting him. It is so nice to know that there are programs out there to help kids with special needs so they can do the things that other kids can. It helps reduce the stress on the parents.

Trinity also had her one year checkup a couple of weeks ago and they had some concerns. She lost some weight after the last surgery and has not been gaining any back. They are going to recheck her in a couple weeks and if she don't gain any then they are going to do a swallow study to see if she has any reflux problems. This cold is not helping any because Trinity is not that interested in eating, but hopefully she will start feeling better and start eating more.

If you think of Trinity please pray that she would start feeling better and that her lungs would clear up. Even though she feels crummy she still has such a big smile on her face!

Trinity's Special Day!!

2009-02-22T21:00:00.004-06:00

We had a "GREAT" birthday party for Trinity Saturday night. It was nice to have our family and friends present to help us celebrate such a special birthday. It really is hard to believe that she is already one. It has definitely been a roller coaster ride for Trinity, but she has pulled through everything with a beautiful smile on her face. As I look back to a year ago tonight and think of us sitting in the waiting room waiting for Trinity's first surgery to be done, little did we know that it was going to be the first of many. The day Trinity was born he gave us the most wonderful miracle. Her life has been a gift to so many people and yet she doesn't know it.
Here are some pictures from Trinity's first birthday party!

Trinity with one of her presents. She had fun opening presents.

We had a little cake made just for Trinity. It was so much fun to watch her dig into it and get it all over. She never stuck her hands in her mouth, but she got it in her hair.

Trinity with her birthday cake made by Raenelle Bryan. It was fantastic!!

Thanks for the emails and posts wishing Trinity a "Happy Birthday"! What a great community of family and friends we have.
Love~The Arthur's

Happy Birthday Trinity!!

2009-02-21T14:13:00.002-06:00

Today is Trinity's 1st Birthday!! We are so excited to be in Iowa and celebrating with our family and friends. Thank you for all of your support over the last year. Everyday we feel your prayers being uplifted. I will be putting a post in the next couple days with pictures from Trinity's BIG day!
Love to All!

Happy Belated V-Day!!

2009-02-15T16:02:00.002-06:00

We hope that everyone had a great V-Day!! We enjoyed a quite weekend with not a lot going on. We took the girls out for breakfast yesterday and then I made a nice supper last night. The girls each got a little toy from eachother. Aubree picked out Trinity's gift and did a great job! She got stacking stars that lights up and plays music. Trinity really likes playing with it and Aubree does too! We had a great church service this morning. I don't know if I have mentioned this before, but we really enjoy the new church we found. We are excited to get involved and start meeting new people.

This past week we had Trinity's 2 week checkup with Dr. Haines. Everything looked really good and Trinity is healing very nicely. They will do an MRI in April to check the Chiari and also to check her shunt and make sure it is working like it should be. We didn't get a lot of time with him because he had an emergency surgery to get to. Hopefully next time we can spend some more time talking to him about some of our concerns. Trinity has been struggling this week with a bad cold. We have been to the pediatrician once this week and it looks like we will be making another trip tomorrow. It is all in her chest and she struggles to breath. They did an x-ray last week that looked good, but she has not improved and I would like to get this resolved soon.

This Wednesday we have an interview with Early Childhood to help with PT and OT. We are really looking forward to this in hopes that we can start getting Trinity some strength to do more things. We also go to Shriners on Thursday to get her new chair! This chair will help her to sit up in her highchair and stroller. I am so amazed at all the things they can do to make it easier for a child with disabilities even at the age of 12 months.

I got a nice "Thank You" card from Shriners for all the pop tabs that have been donated. This goes out to all of you that have helped us with donating these. I have a box to bring for my next visit. Everytime I get to drop them off I get so much joy in seeing the faces of the people I give them to. Just know that what you are doing is helping put another child in a wheelchair!

We are getting excited for Trinity's 1st Birthday! We can hardly believe that she is going to ONE!! I look forward to doing a post on Trinity's first year of life. We get to come back to Iowa to celebrate with our family and friends.

Have a great week! :)

"Rejoice Always"

2009-02-03T16:16:00.002-06:00

I put "Rejoice Always" in the title because it is something I have to say to myself everyday, even when things seem hopeless, I have to remember to rejoice! I say this because the last week has been such a guessing game with Trinity. Unfortunately she has still had some vomiting issues and choking. Maybe this is something we will deal with for the rest of her life, or maybe it is going to take awhile to change. With the vomiting it does make us concerned that something could be wrong with her shunt, but we are watching for any other signs that come with a shunt malfunction. I swear it is such a guessing game. Yesterday I was doing some PT with her on the floor and when I layed her on her tummy it was a wake-up call to me that Trinity had lost her neck strength, which is a given considering they had to cut through her muscles back there. So we have been working on restrengthening those muscles, which does not make her very happy. This would be the time that I wish I was in Iowa so our favorite PT could help us, "Oh, Paula"!!

We had the privilege of having my parents and Grandma Shearer here for a week to help out and then Shannon's parents came Friday night with a surprise for Aubree. They brought Aubree's cousin Selah with them. They had a lot of fun playing together! They had to leave yesterday, which did not make Aubree a very happy girl for about an hour. She wanted to know when her Grandma was coming back.

We have a pretty uneventful week here at home, which is fine by me. Trinity needs all the rest she can get and if she is stimulated too much she gets kinda fussy by the end of the day. Her incision is looking and healing really good. We will have our 2 week checkup with Dr. Haines on Feb. 11th.

We Are Home!!

2009-01-27T16:56:00.003-06:00

Trinity got to come home yesterday around 4:00pm. She continues to have some pain, but we are trying to control that with Tylenol and lots of sleep. She had an issue last night before bedtime with vomiting, but so far today she has been doing really good and keeping her food down. The thought has crossed our mind if something might be wrong with her shunt, but we are going to watch her the next couple days and see how she does.

We are all really glad to be home and sleeping in our own beds. As much as we wanted to come home it was also difficult to leave our roommate behind. Aubree wanted to take him home with us, but unfortunately that is not the way it works. Before we headed home we stopped by Shriner's to drop off some pop tabs. They were so happy with the amount that I brought in. "Thank You" to everyone for your help. I think about how much it costs for healthcare for kids with health issues and then to add equipment on top of that, Shriner's makes it possible for those that can not afford to still get good healthcare and I feel like that is something worth supporting. Who knows, someday Trinity might be one of those kids that needs a wheelchair and with your help Shriner's can provide her with one!

Thanks for all the prayers over the last week and last year! I can't believe in a month Trinity is going to be one, it just don't seem possible. What a blessing God gave us!

Have a good week and we will keep you all posted as Trinity continues to recover!

Recovery

2009-01-25T08:06:00.003-06:00

It has been a long past three days for Trinity. Friday night Shannon stayed overnight with Trinity so I could get some much needed sleep. On Friday Trinity struggled keeping anything down and as the day and night went on this continued. She became dehydrated which required them to do an IV so they could get some fluids in her. Putting an IV in Trinity does not go real well and with that being said it took a number of people to finally find a good vein to put one in (with the help of an ultrasound machine). So at 9:30 pm they told Shannon she was dehydrated and about 4hrs later they finally got fluids in her, I don't think I have to tell you how unhappy daddy was. Trinity has ran a temp since having surgery until late afternoon on Saturday. I think seeing her big sister Aubree really helped Trinity, because after giving Trinity a bath we started to see the old Trinity. She gave us little smiles and even babbled a little.

Last night I stayed with Trinity. She really had a pretty good night other then her oxygen level would go down into the low 80's when she was sleeping. They think it has to do with the morphine, but just to make sure they blew oxygen on her all night. She slept from 9:00-7:00 besides the few times the nurses had to do the vitals. The little boy next to her was also a good sleeper, he had more things done to him in the night then in the daytime, I don't know how he slept through all the noise the nurses were making. I don't know the boys situation, but I know that he has cancer, is 10months old, and has been here for the last 8 months. The nurses have pretty much raised him and we can see why. We have been his roommate for 2 days and the mom has been here for a total of 15 minutes. When I was calming Trinity down last night and watching her sleep, I just thought of the little boy next to us and how neglected he must feel. It just brought me to tears to think of the love and affection he is missing out on. You can see that the nurses are really good with him. They all take time holding him and he spends most of his time out at the nurses station in his wagon.

As I write this post, Trinity is playing with her balloon that Nana and Papa got her and babbling. It is so nice to see her getting back to her old self. The Neurosurgeons just made their rounds and so far everything looks really good. She is having a little drainage from her incision, but they are going to keep an eye on it. They are also going to lower her fluids through the IV and we might try some baby food tonight for supper. Things are slowly starting to look up for Miss Trinity Sue! Thanks again for your continued prayers. Hopefully our next post will be that Trinity is going home!

Surgery/PICU/Pediatric Unit

2009-01-23T10:05:00.007-06:00

Good Evening! Sorry we didn't get you all updated last night, but because of how long it took for her to get out of surgery and recovery we didn't get settled in until late.
We started out the morning at about 3:30am and woke Trinity up around 4:20am to a nice bath with her pre-op shampoo. She did not think this was a very nice way to wake her up. We got to the hospital around 5:30am. They did all the pre-op questions and then took Trinity away to surgery around 6:30am. We waited anxiously to hear something all morning, finally around 11:15 we had made some contact with the nurse. She informed us that surgery did not get started until 10:25 because they had such a hard time getting an IV started in her. So with that being said, what we thought was going to be a 4 hour surgery turned into being almost 8 hours. The doctor came out around 2:00 and told us everything had gone great. They actually had to remove more then they thought they would. They removed the piece of skull that they had planned on and then found that the top two vertabraes were in the way causing a pinch on the stem of the brain. So they had to remove the top two bones to disconnect the brain stem. During the surgery they were fortunate enough to use a machine to scan Trinity after they were done to make sure that they removed everything that was causing interference. This helps to give them an preview of what everything will look like once the surgery is complete. Dr haines did confirm with us that she has one of the more severe cases of chiari malformation that he has seen.

The first night after surgery was a long one for Mirands. Once again Trinity was sharing a room with two other girls. Very ironicly, same as the last surgery, we shared a room with a 15 year girl with a rair disease that I had never heard of. Along with the disease she had a severe case of scoliosis. She has recently had a surgery to correct the 75 degree bend in her back. To put this in perspective, Trinity has a 38 degree bend in her back and looking at this on an x-ray it looks like a lazy letter C. At the age of 15 she weighed 59 pounds. The bend in her back was so severe she could eat very little because of the pressure her rib cage put on her stomach. Needless to say, she could use some prayers.

Today has been a fairly good day. Trinity was able to get out of ICU at about 1:00 today. She has been running a fever off and on all day and she has not been eating real well, but the doctor said that was to be expected. Dr. Haines stopped by this evening and said he thought everything was looking good, and he was pleased with her progression. Tonight I finally made Miranda go home to sleep and T sue and I are hanging out here in the hospital and life is good. Thanks to everyone for your thoughts and prayers. God has one again blessed us and we have so much to be thankful for.

Shriner's Hospital

2009-01-12T10:49:00.002-06:00

As I am sitting here writing this post we are getting a ton of snow and I have a little helper sitting in my lap, Trinity! She wanted in on the comments I made about our visit on Friday to Shriner's.

As most of you know we had our first appointment with Shriner's last Friday. It was a long day of seeing many doctors, but it was a refreshing day for us also. I really don't know where to begin. We had our first appointment at 9:00 am where Trinity had an x-ray and ultrasound done. After we were done with this we were called into a long hallway with about 6 different patient rooms. We were one of about 8 families that were being seen that day. I don't know that all of them were spina bifida, but we did meet one family that has a 2 year old son that has spina bifida and it is the same location as Trinity's (L5-S1). We got to spend some time talking to them between appointments. I don't want to drag this out any longer then it needs to be so I am only going to give you the highlights of the day. The x-ray showed that Trinity has a severe curvature to her spine (scoliosis). Her curvature is about 38%, not real good. For most of you that have spent some time with Trinity you will notice that she tends to lean to the right a lot and that is why. Nothing will be done about this right now because of her upcoming surgery, but we go back in 3 months and they may look at putting her in an upperbody brace. The ultrasound looked great. Trinity is voiding like she should be and her kidneys look good. We have an appointment scheduled in February where they would do some different test on her bladder and bowels, but the Urologist that we seen said he didn't see any reason for the test to be done and that they would do some testing in about 3 months. So Shannon and I are going to pray about this, but we feel pretty good about listening to the doctor at Shriner's and waiting 3 months. We will keep her on the Bactrim (anti-biotic for her bladder) for now, but he hopes to get her off of it so she can get her immune system up. We also met with a Neurologist, Neurosurgeon, and an Orthopedic Surgeon. We plan to keep Dr. Haines, from the UofM for now. We feel more comfortable with him and the fact that Dr. Gilmer referred us to him.

An exciting point in our day was meeting with the PT and OT. They are having a chair made for Trinity where she will be able to situp in her highchair and her stroller! We are really excited for this because we feel like Trinity spends a lot of time having to be on her back since she can not situp. They also gave us a chair that can go in the tub so Trinity can take baths and we can also use it in our family room and she can watch some cartoons with Aubree while being strapped in her chair. I will be sure to take some pictures of these so you can see what I am talking about. They have to make the other chair and it will be done in about a month.

We were searching all week for a place for Aubree to go so we didn't have to take her with us, but God knew what he was doing. We were glad that Aubree was there. She got to see kids of all different needs and made some friends along the way. I can say that for once I felt like we were not a minority and we fit right in with all the other families. I really wish I could have had a video camera so you could have seen how our day went. It was a GREAT day! I felt renewed and refreshed! How great is it that we have hospitals in this world that help little kids that are in need of so much and do it at no cost to the patient. You don't have to worry about if your insurance company is going to pay for it, you just go with the piece of mind that they are going to give you the best care for your precious child.

I got the chance to drop of some pop tabs and I talked to the guy about where the money goes for this. The Women's Auxiliary takes them to a donation center where they get money for them. They then use the money to help buy wheelchairs for kids. How great is that! So don't throw those tabs away, SAVE, SAVE, SAVE!!!!

I know this is a pretty long post, but I wanted to fill you in on our day. I know there is still a ton I want to say, but I will save it for another post. Have a great week!

Happy New Year!!

2009-01-05T18:19:00.002-06:00

We made it home last night from our week and a half vacation in Iowa! We had a good time with family and friends, but are excited to get back home and get into our normal routine. We had a GREAT Christmas and came home with a packed vehicle of toys for the girls (I am still trying to make room for them all). We also enjoyed celebrating the New Year with Shannon's sisters and their families. The adults got to go out to eat with no kids, thanks to a daring teenage girl, Liz (she is still probably trying to recover from the evening). We didn't have reservations until later in the evening so Trinity was in bed the whole time we were gone!

I realized today that I have not told you the date of Trinity's surgery. It is scheduled for January 22nd @ 7:30 am. We will have to be there at 5:30 am so it is going to be a long day for us. The surgery should take about 4hrs and we are guessing that she will be in the hospital about the same amount of time she was the last surgery.

We also get to go to Shriner's this Friday. Shannon and I are both excited to have Trinity evaluated there. This will be a full day of seeing different doctors.

I want to share with you the pictures I had taken of the girls. My good friend Sarah took the pictures. She is such a huge help when it comes to posing Trinity for photographs. The website is
http://www.photoreflect.com/pr3/store.aspx?p=36274
and the password is arthur

We pray that you had a Blessed Christmas and have a Happy New Year!!

10 Months Old

2008-12-22T13:34:00.003-06:00

As we near the holiday season we wanted to take some time to reflect over the last 10 months and the appreciation we feel for all our family and friends.

Ten months ago yesterday the Lord blessed us with a beautiful baby girl. When she arrived we had no idea the things we would face and the decisions we would have to make. Trinity has been such a "Joy" not only to our lives, but to many others!

When I think of the frustration I feel when we have to face yet another surgery I think of our friends the Timmerman's. As they celebrate Christmas this year they are also suffering the loss of their little boy Luke, that was stillborn a couple days before Trinity was born. My heart goes out to them during these holidays. God brought Liz and I together during our NST and I thank God for that. She has shown me so much strength and courage and I hope I can be half the woman she is. Even though Luke and Trinity never met, I know that he is looking down on her and is watching over her everyday and every trial that she faces. There is nothing harder then losing a child, and even though I can't relate with this term, I can only sympathize with the mothers and fathers that have. So to all of you that are celebrating Christmas this year and missing your loved ones, my heart goes out to you and your family. I pray that you feel a sense of "Peace" from the Lord and know that the ones that have passed on are celebrating with our Lord and Savior.

This year as I was doing my shopping for gifts an overwhelming feeling of hurt and pain came over me. I was struggling with what to buy Trinity for Christmas. What do you buy for a child that can't move her legs, can't crawl, and can't sit on her own? Well let me tell you there is not much out there. But God spoke to me in that moment and showed me that Trinity's gift has already been given to her, she has a great family and wonderful friends. Some of you she has never met, but God has connected us through all your prayers. When you see the smile on her face you realize there is nothing in this world that could break her spirit. She has shown me so much strength, patience, and love. So our worldly gift to her this year may have been small but our spiritual gift to her is what really matters. As we look into 2009 Shannon and I want to make a difference in Trinity's life and others in need. Making our relationship with God our number one priority and showing our children that God is what is most important in our lives. I know there are going to be days of anger and frustration, but who understands more then our Lord, who gave his only son so we could have eternal life with him.

So our gift to you, our friends and family, is that as we near another year we pray that you would make God your Lord and Savior. No matter what you are facing today He will carry you through it.

Thank you for helping us through this challenging year. We could not have done it without the support of all our family and friends. Your generosity and support will never be forgotten. All of you hold a special place in our hearts!!

Merry Christmas,
The Arthur's

Merry Christmas and Happy New Year!!

2008-12-15T13:45:00.004-06:00

From our Family to Yours,
Merry Christmas and a Happy New Year!!
Love, Shannon, Miranda, Aubree, and Trinity

MRI Results

2008-12-10T19:45:00.002-06:00

Yesterday Trinity had her MRI done and today we seen Dr. Haines, the Neurosurgeon, to get the results. Unfortunately it was not the news we were looking for. The piece of skull that they removed the last decompression has grown back and is blocking the spinal fluid from getting to a portion of her brain. This can cause problems with choking, breathing, speech, facial expressions, and eating. There was a chance this could have happened, but we were hoping it didn't. He would like to get this done sooner then later, but is willing to wait until after the first of the year. Shannon and I are going to talk this over and pray about what we should do. It is very difficult with the holidays only 2 weeks away. We are thinking that we will probably wait until after the first of the year so we can enjoy our holidays with family and friends, but we also have to consider our insurance (don't you love insurance!!). Please pray that we make the right decision, not for our sake, but for Trinity's. He just don't want any of her current symptoms to get any worse.

Yesterday we also seen the Urologist for the first time. They are going to do some testing on Trinity after the first of the year (dates still to be determined). This will involve some ultrasounds of the bladder and kidneys and some other testing that will determine if Trinity is voiding completely and not causing any damage to her bladder and kidneys. They will also be checking her bowels to see how that looks. She deals with constipation and we have to help her with suppositories of which they informed us that will never change and she will deal with this for the rest of her life. He wanted to make sure I understood that doing a catheter is never out of the question and that it will probably be likely in Trinity's future. He did a good job of informing me of the things that Trinity will deal with as she gets older and I appreciate his honesty.

The past two days have been emotionally draining. Just when things start looking good for Trinity we get the news of yet another surgery. Discouraged is my word for the day. I am using this blog to be honest with everyone so I hope you don't mind. Do you ever wonder how much a little body like Trinity's can go through? It don't seem fair that someone as small as her should have to go through yet another surgery.

On a lighter note, we took Aubree and Trinity to the Mall of America this past weekend. We found it odd that everytime we would walk into a store and out of the store the alarm would go off. After awhile we figured out that Trinity's shunt is magnetic and the alarms pick up on magnets. So Trinity will never be able to be a very good thief because she will always get caught!!

MRI

2008-12-01T20:53:00.002-06:00

I know we haven't blogged in awhile, but things have been busy traveling to Iowa and trying to get settled into our new home. Trinity had her first Neurosurgeon appointment on the 19th. It went okay. We didn't learn a lot at this appointment. They are going to do an MRI on the 9th of December to check the Chiari and make sure that it is not causing the choking and gagging. They will have to put her under for this which is never fun, but it has to be done.

We also seen her pediatrician for the first time and we really like her. She is from Michigan which for some reason made me feel good!?! Trinity has been fighting a really bad cold and it makes it very difficult for her to breath so we are trying to get her over that.

Aubree started dance class and really enjoys it. She is turning 3 on Friday. She loves her birthday, what am I saying everday is Aubree's birthday!!!

Don't forget to send us your Christmas cards!! We love getting good mail instead of hospital bills all the time! I know some of you have been asking for our new address so I am going to put it on here so you have it:
3521 Maplewood Circle, Excelsior, MN 55331

We hope you all had a great Thanksgiving! We were very blessed to have been back in Iowa and spend it with our family and friends.

New Doctors

2008-11-10T15:40:00.006-06:00

Hello to Everyone! It seems to be officially winter around here. We enjoyed a week in Iowa last week with family and friends. Trinity also had her last Physical Therapy appointment in Pella. This was really hard to leave Paula, she has been a lot of help for Trinity and Trinity loved her! I added some pictures of Trinity at Physical Therapy and with Paula.

On November 19th we meet with Trinity's new Neurosurgeon. I spent some time talking to his assistant and asked him different questions about Dr. Haines. He told me that the areas he specializes in most are: Hydrocephalus, Chiari, Spina Bifida, and Tethered Spine (all a bonus). This was great to hear since Trinity has all of these. Once we meet with him he will point us in the direction of all the remaining doctors.

We also found out the Shriners Hospitals get a lot of their money from people donating the tabs off of cans. Since Trinity will be going there in January, we have decided as a family to start saving these. My parents Rande and Paula, and Shannon's parents Boyd and Kathy, will have buckets at their homes. If you wish to drop them off there they will make sure to get them to me and I will turn them into our local donation spot. When I was on the internet looking into this, just off of tabs alone they raised $20,000 at one hospital. So everytime you finish a can of pop remember Trinity and SAVE YOUR TABS!!!

Thanks for checking in on us! We hope you all stay warm as the winter months creep up on us!

Paula and Trinity during physical therapy.

Trinity on the ball doing a good job of looking up at mommy to take a picture!

Settled Into Our New Home!!

2008-10-28T15:41:00.003-05:00

It is official we are all now Minnesotans (don't know about the spelling)!! Last week Shannon and I got to move into our new home and unpack everything while the girls stayed with my parent's in Iowa. Then on Sunday we all came home together and have enjoyed our new home together. Aubree was very excited about her new room and it was like Christmas for her when we unpacked all the toys. For all you parents don't go buy new toys just put them away for about a month or more and then let the kids unpack them and they will think they are in heaven!! It has been nice so far waking up and enjoying our new space. Trinity seems to like her new room and new environment. I think she will always be happy as long has she is with the people she loves. Most of all it is nice to have us all under the same roof at night. We really missed having Shannon around. We would like to give a special "Thank You" to our parents for letting us live with them while we were awaiting our new place.

With a lot of to-do's on my list for the week, my number one is to get doctors setup for Trinity. She needs to see so many that it is quite overwhelming, but I think we have been living in a fantasy world for the last 2 months with no surgeries and no doctor appointments.

We want to "Congratulate" our friends Sarah and Travis Turnbull on the arrival of their little boy Sayer Michael. We are so happy that he is healthy and that he has brought such a blessing to the Turnbull family. Please pray for them as they adjust to the changes in their lives.

We will be sure to post some pictures of Trinity soon. She has grown so much and gives us a lot of smiles. We hope you all have a blessed week!!

Update

2008-10-16T20:42:00.002-05:00

Sorry that we haven't updated in awhile, but things have been going pretty good. We kinda had a scare on Monday thinking that Trinity's shunt was not working again. She was vomitting and just not acting like herself, but it ended up being a bad cold. We are just glad it wasn't the shunt.
She continues to do physical therapy in Pella and it is going really good. Trinity is learing to waive bye-bye and gets really excited when she does it. It is funny how you take the little things forgranted with your kids. We get so excited when Trinity does something (like eating solids for the first time). She definately has made some progres, but we still have a long ways to go.
We did find a house and we will be moving next week. We are really excited to finally be a family again and to get Trinity into some doctors up there. Shannon has been living by himself for the past month in Minnesota and the girls and I have been living between Lynnville and Montezuma. We are just blessed to have such great parents that love us enough to let us live with them!!
I can't "thank" all of you enough for all the prayers. We feel them so much!! I am asking that you also remember Shannon and I in your prayers. Not very often do I talk about our feelings through all of this, but lately I have really been struggling with things, and when I see other children and then realize how far behind Trinity is and start wondering if she will ever crawl, walk, or even roll over. My heart breaks for her, but sometimes I think it selfishly breaks for myself. It is very hard to not be bitter at times, but God is constitantly showing me how much he loves Trinity and loves us. For those of you that know Trinity, she is full of smiles and is such a happy baby. She has definately been Shannon and my inspiration through all of this. I don't know too many babies that could go through all that and still have a smile on their face. I am sorry for rambling, but sometimes it is nice to just let it out and to have people praying for ya. We are so blessed to have such wonderful family and friends!!

Physical Therapy

2008-09-30T10:38:00.003-05:00

Last week we started physical therapy for Trinity in Pella. She's been going GREAT!! Paula is her PT and she does a fantastic job with Trinity and shows her so much love. Trinity is showing more strength in her neck and does a better job of keeping her head up when you have her in a sitting position. She also lays on her tummy and holds her head up good when she does that. This has been one of the best decisions Shannon and I have made. We are determined that Trinity is going to be the percent that walks!! If you live in Pella or the surrounding area and need some PT I really recommend Sterling Physical Therapy!!

We still have not found a place to call home yet. Shannon and I looked on Friday and found a couple different places, but we are waiting to hear back on them. Please keep this in your prayers. The girls and I really miss Shannon and we need to get Trinity in Minnesota so we can start our search for doctors. I can't remember if I posted this or not, but we did get Trinity approved into the Shriner's hospital in MN. They have scheduled her first evaluation on January 9 (that is how far they are booked out). We are really excited for that!!

We just want to say once again how blessed we feel to have such great family and friends!!! Many of you have blessed us with money, gifts, and tons of prayer. We don't have enough "Thank Yous" in the world to express how grateful we feel!!

I also have to brag, the picture above is of my nephew Kodie's go cart. My dad had this painted on the front of it.
Have a great week!!! Love~The Arthur's

Poker Run Benefit

2008-09-23T12:36:00.005-05:00

This past Saturday people gathered to show their support for Trinity. Bikers came from all around the state and some traveled from Illinois. This was another humbling experience for Shannon and I. We would like to say a special "Thank You" to Paul and Caryn Webb, and Randy and Gale Johnson. They put a lot of work into an awesome event! It started with a 100 mile Poker Run (motorcycle ride) including 5 stops. It then ended in front of the Montezuma Tap Room where they hosted a dinner and dance. They also had different raffles and a 50/50. The winner of the Poker hand gave the money back to Trinity and the winner of the 50/50 did the same. There honestly are so many amazing things that happened that day, I don't have enough blog space to blog about it. It was great seeing people we knew and people that we didn't come and support our baby. Someday we will tell Trinity about the amazing people that love her and supported her when she needed it the most. Shannon and I did not know the Webb's before they did this, but they have become our friends for life!! Thank you to everyone that came on Saturday and showed your support. You will forever be engraved in our hearts!!

Trinity is doing really good. She started therapy yesterday in Pella. We wanted to get her started on her therapy so we were not getting behind. We will make that trip twice a week. We have still been trying the solids, but she is not real sure about it and still has some issues with choking.

We have not found a home yet in Minnesota, so please keep that in your prayers. It is getting to the point that we really need to be finding something soon so we can get Trinity the doctors that she needs. We have looked at so many homes to buy that we feel like God is telling us that we are not suppose to buy right now. So with that being said we are going to rent until we are comfortable with buying something.
The girls and I continue to live in Iowa and Shannon started his job yesterday.

This is a picture of the band that played on Saturday night and some of their biker group from Illinois.
Love~The Arthur's

6 Month Appointment

2008-09-09T19:28:00.003-05:00

It has been quite the week with a lot going on. We have been so busy trying to get things ready to move, packing enough clothes for about a month, and getting doctor appointments in.
Trinity is doing really good! She had her 6 month appointment today, which was about 2 weeks overdue, but we couldn't do it until she healed up from the surgery. He was very pleased with how Trinity looked and was growing. She weighs 16lbs 14oz and is 24in long. She seems to be a little shorter then most kids at her age, but they said it was pretty common with spina bifida. On Thursday we go to see Dr. Gilmer for her checkup. Her incision is healing really good and she has been holding her head up more and doing really good with her upper body strength. We also started feeding her some solids. She doesn't mind it, but she only eats about a 1/4 of it and then decides that is enough. Hopefully over time she will develop more of an appetite for it.
On Saturday Shannon and I enjoyed our 5 year anniversary. We had a great day and evening! My mom has been here and watched the girls for us so we could go spend the evening together, something we don't get to do very often. We have been very blessed over the past 5 years with a wonderful marriage and two beautiful girls (what more could you ask for). As we continue to go through life Shannon and I vow to eachother that we will do it hand in hand with God as our guide.
So with two final words as we head towards Minnesota, "GO VIKINGS!!"

Trinity is Home!!

2008-09-02T09:11:00.002-05:00

Sorry, I should have updated this a couple days ago, but things have been busy. Trinity got to come home Saturday afternoon. She continues to amaze us! She's doing so good and is keeping her head up and showing more upper body strength. She has started to smile again and is acting more like herself. Dr. Gilmer will see her again on the 11th and then we are hoping to move on the 12th. We have a lot going on in the next couple weeks so please keep us in your prayers. Thank You~The Arthur's

Trinity Update

2008-08-30T08:31:00.004-05:00

Hopefully everyone enjoyed a beautiful week! Trinity is still recovering in the hospital and doing great. She moved from the PICU to the Peds floor yesterday afternoon. She no longer has the head dressing and they removed both her IV's. She seems to still be in a lot of pain and discomfort ( I guess if I had surgery on the back of my head I think it would probably be uncomfortable to lay on all day long). We are crossing our fingers that she gets to come home today. Shannon took last night's shift at the hospital. It was nice to sleep in my own bed and take a shower in my shower.
Aubree came to the hospital the other night and read a book to Trinity, so I added that picture. She really loves her sister and is always so concerned about her. I also added the picture of her head. I know you can't see it real great, but it gives you an idea of how big the incision is.

We really appreciate the words of encouragement and the prayers. It has been a long week for us emotionally. Hopefully we will be updating in the next few days to say that she got to come home!

Chiari Decompression

2008-08-27T16:21:00.006-05:00

Hello to everyone! As the afternoon drags on and the day continues Miranda and I are feeling a little exhausted, but relieved. The surgery went very well and Trinity although in a lot of pain is doing well. She just finished dominating 6 ounces of formula. The doctor was a little concerned that her heart rate went to over 200 while she was being fed, so they are drawing blood to make sure everything is ok. The doctor thinks that her heart rate rising was due to being in pain because she was being moved around.

The surgery itself went very well, and was much needed from what doctor Gilmer said. She said that when she got inside the back of her head and neck she found that there was a membrane that had formed over a portion of her spinal column which was restricting the flow of spinal fluid to the 4th ventricle in her brain. I'm not 100% sure what all of this means or causes, but I know it was not good. The picture above shows with the dashed line exactly what part of Trinity's skull was removed. If you look closely at the picture you will see that there are two portions of the drawing that have diagonal lines on it. One is the Arch shape and the other is the small thin bone that you see that looks like a bridge across the spinal column. With these two bones gone her spinal column will have room to function properly with no nerve pinching or spinal fluid restrictions. This will also give the stem of Trinity's brain more room to reside and therefore function properly.
Thanks again for the prayers. We could really feel them this morning. This by far has been the toughest surgery to go through. She will be in the PICU for tonight and then hopefully moved tomorrow to the Peds. Tonight they will be checking on Trinity every hour, this will make for a long night. We will be sure to update if anything comes up. Trinity sends her smiles to all of you!!! :) (This picture was taken a couple days ago, she is such a happy baby!!)

8/26/08

2008-08-26T07:39:00.002-05:00

Just wanted to update everyone with the time of our surgery. It is Wednesday at 8:15am. We think the surgery will last about 3-4hrs. She will be in the hospital at least 3days and in the PICU for 1-2 of those days. She currently has a really bad stuffy nose. They will not do the surgery if her snot turns green or if she starts to cough. So please pray that the cold does not get any worse and she starts to feel better by tomorrow morning. Shannon's mom, Kathy, is here to help us until next week and then my mom, Paula, will be out to help.
For some of you that haven't heard our exciting news, Shannon recently got a promotion with Pella Corp and we will be moving to Minnesota. He starts his new job on September 15th. We went looking for houses last week, but did not have any luck, so we would appreciate your prayers as we continue to find something. The girls and I will then move somewhere around the 15th (if the doctor lets Trinity leave) to Iowa for a couple weeks until we can find a place to live. We are really excited for this move since it will put us closer to home. We have a lot of homework to do in finding good doctors again, but God will direct us in all the right ways!!
We will keep you updated after Trinity's surgery. Thank you for your prayers before, during, and after the surgery.

Enjoying the Cool Air!!

2008-08-11T12:34:00.000-05:00

We really don't have anything new to report. This past week we went back to Iowa and enjoyed seeing everyone. Trinity and Aubree are always so good in the car. Trinity is doing pretty good. She had another round of shots a couple weeks ago (still didn't feel anything). We don't have any appointments this week which is really nice! We haven't heard anything from Dr. Gilmer since she has been on vacation, as of right now the surgery is still planned for August 27th. We will have a lot of help from both our parents while Trinity recovers from the surgery. Trinity is showing us some progress with her physical therapy. She is showing more strength in her neck and she turns her head more to sounds. We still have not got her to rollover, but hopefully that will be in the near future. She also will not be able to start eating any solids until she can hold her head up. She still don't have alot of upper body strength like other babies her age do, but we never give up and keep working with her everyday.
Thanks for checking in on us. Sorry we don't have a lot to report. We hope you are having a great end to your summer!
Love~The Arthur's

Chiari Malformation II

2008-07-26T09:15:00.000-05:00

On Thursday Trinity was seen by Dr. Gilmer. She checked her shunt and was very pleased with how it was pumping and how Trinity looked. This was also the appointment that Dr. Gilmer was supposed to review Trinity's MRI. After reviewing there were several areas of concern that were noticed, some of which were more urgent than others. The MRI showed the Chiari Malformation to be quite apparent and quite severe.

Just so you are understanding what Chiari Malformation II is here is a brief description of it from a book that we have. It is a difference in the structure of the brain involving the lower brainstem, upper spinal cord, and the lowermost portion of the cerebellum. About 85-90% of children with spina bifida have this malformation. Only a small percent of children, however, show symptoms and problems that eventually require surgical management. When the Chiari is present, the brainstem and cerebellum are pushed down and compression may occur due to lack of space. In addition, the fourth ventricle is elongated and enters the cervical area of the spinal cord. This may block the normal flow of CS fluid and increase the compression on the brainstem. It also results in increased intracranial (within the skull) pressure or displacement of CS fluid into cysts in the spinal cord. Some symptoms that Trinity has been showing is upper extremity weakness and she tends to gag when she is eating.

This would mean surgery right away. Due to Dr. Gilmer taking a two week vacation and already having a full surgery schedule, Trinity is tentatively scheduled for the 27th of Aug. The procedure consists of Dr. Gilmer taking a generous portion of Trinity's skull on the back side of her head where the skull meets the vertebrae. She says that it is important to take a large amount so the surgery will only have to be performed once. It is probable that as young as Trinity is her skull will partially grow back. This will relieve the pressure that is being applied on the stem of Trinity's brain, which is causing her spinal fluid to be restricted and nerves to be pinched. There is a certain amount of risk that is involved this surgery. Anytime a procedure is done so closely to the brain there is a risk of damage. There are also a number of large blood vessels that are located in this area and a blood transfusion is probable. There are things down the road that Trinity could face with having Chiari Malformation II, but most of them we will not know for sure until she gets older (walking, hearing, speech, etc...).

Secondly the MRI showed that Trinity has a tethered spine. When the surgery was performed to both close Trinity's spinal column and her skin on her back the two healed well, but as I understand it they grew together. It will not be until Trinity starts to grow and walk that we will be able to understand how this will effect her, or if it will at all.

Lastly, Dr. Gilmer can see where Trinity has scoliosis. She says that this is not uncommon at all with spina bifida children. She says that time will tell whether or not surgery will be needed to correct this problem also.

This is all a lot of information, but hopefully you understand what to be praying for. This is a lot to digest. When we think of all the risks and Trinity having to go through another surgery it makes us sick to our stomachs. When we found out that Trinity had spina bifida we didn't expect half of the things that we have faced in the past couple months. Sometimes I ask God "Why?". I will admit that the last couple days that question has been going through my mind a lot. I spent some time tonight going through some past posts and it pretty much brings me to tears. I can't believe all that Trinity has faced in her short life. I am really asking you to get on your knees and pray for our little girl. Pray that God would bring healing to her body and that if this surgery is what he wants for her that he would give Shannon and I some peace about it. Pray that Trinity would have a speedy recovery and that this would fix what needs to be fixed and not cause anymore damage. Shannon and I could really use your prayers also. It is a lot to have on your shoulders when you have to make decisions that involve your child's life. Please pray that we are making the right choices with Trinity.

7/24/08

2008-07-24T10:19:00.000-05:00

Today we see Dr. Gilmer. She will talk to us about the MRI and check her shunt. I will be sure to update you tomorrow on how our appointment went today. Here is a picture of Trinity's head after her surgery. She's doing really good!

Update

2008-07-21T07:47:00.000-05:00

Sorry for the delay, but things have been kinda busy around here. Trinity is home and doing great! She got to come home on Thursday. She still has some pain, but it is usually at night. We catch her putting her left hand up next to her incision and rubbing it, we are pretty sure that is were the discomfort is coming from. She's really a different girl and seems so much happier.
This week we have the privilege of having Kayla Jansen at our house. She flew in last night from Iowa and will be staying with us until next Sunday. We are really excited to have her here!
Trinity has an MRI scheduled for tomorrow at 8:40 am. They will have to give her general anesthesia so she don't move during the testing. They said it can take anywhere from 2-3 hours. This will help Dr. Gilmer see how bad the Chiari is. I will let you know how this goes. I will also update you on our appointment from last week.
Thanks again for the prayers, we can really feel them!!
Love~ The Arthur's

Shunt Revision

2008-07-16T14:27:00.000-05:00

We just wanted to take some time and update everyone on our current situation with Trinity. We are currently at Beaumont Hospital and Trinity has had surgery and is now in the Pediatric Unit. Yesterday we had a doctor appointment with many different doctors at the Spina Bifida clinic. They were concerned with her shunt and requested that a CT scan be done. After having that done Dr. Gilmer found that her ventricles were 2-3 times the size they were at birth. Shannon and I got a phone call yesterday requesting that Trinity come in right away in the morning for a Shunt Revision. We feel very greatful that we had the appointment yesterday and that the doctors noticed this. God knew what he was doing when he scheduled that appointment! If this would have gone on much longer Trinity could have ended up with too much pressure on her brain which can result in brain damage. She really was not giving Shannon and I any reason to be concerned, but they thought she probably would have in the next couple days. Basically the shunt is no longer in the ventricle so they need to go in and replace the catheter that will go into the ventricle(if any of this is making any sense to you guys). Her head has basically grown in size causing the catheter to fall out. After surgery Dr. Gilmer also found that the shunt had some blockage which required it to be replaced. Please keep our baby in your prayers. She is having some discomfort and pain. Trinity is also sharing a room with a 16 year old girl that had scoliosis (spelling??) surgery. Please pray for her also as she is having a lot of pain.
As of now Trinity will be here overnight. They will recheck her in the morning and go from there.
We will keep you updated on how things are going over the next couple days. We will also spend some time this weekend or next week updating you on our doctor appointment yesterday. It went really good and we got a lot of information.
Love~The Arthur's

Neurosurgeon Appointment

2008-07-09T18:35:00.000-05:00

Last week Trinity was seen by Dr. Gilmer-Hill (neurosurgeon). She had a concern with a few things. Trinity has been choking when she eats, her soft spot is kinda full, and she is losing some upper body strength. With that being said she requested to have an MRI done of her head and spine. She is about 99% sure that she has the Chiari Malformation II and would like to see how severe it is. The soft spot can be her shunt or it could be the cause of the Chiari. We don't know for sure what this means and what they will do to fix this. Next week we will meet with all the doctors from Children's in Detroit. They will also have access to the MRI and we can get a second opinion. Dr. Gilmer-Hill still has many connections at Children's and will work with the doctors there. We are still not sure when they will do the MRI, we were hoping to have it done this week, but because she has to have general anaesthesia, there are a few more steps to the process. Patience is something God is really teaching me through all of this, something I lack!! We will definitely keep you posted on the MRI and the doctor appointment next week.
On another note, we got to go to Iowa last weekend for the fourth!! Are we crazy, probably, but it was a good time and we love spending time with our family and friends. (Gas is cheap, ha ha!!) The girls did really good on the car ride there and home.
Trinity also started cooing (spelling??) this week. It is the cutest thing and there are times she will go on and on like she is trying to carry on a conversation with us. It feels so good to see her smile and giggle after everything her little body has been through. As a parent you hate seeing your child in pain, something positive is nice for a change.
I love these two pictures. Shannon went fishing on Lake Huron the other day and took these pictures.

Trinity 4 Months Old!!

2008-06-28T14:14:00.001-05:00

Well, can you tell it is summer out there?!?! It is getting hot here and today our air decides that it don't want to work, not a lot of fun in the Arthur house! But we will survive, we have been without air before we can do it again.
Trinity turned 4 months old last Saturday!! She is growing more and more everyday and getting a personality. She is finally starting to like some of the toys we have for her (bouncy seat and swing). The picture that I have on the left side is of Trinity giggling when we took Aubree to the park. It was the first time we ever heard her giggle. The picture below is of her on the floor with some of her toys. She is starting to try and reach for the things above her, but she don't get quite high enough.
We had her four month appointment on Friday with her Pediatrician. Trinity weighed 15lbs. 3oz. and was 23 1/4 long. He felt like she was doing really good and was probably a little behind on some things (rolling over & upper body strength), but that it was to be expected with her condition. We decided to space out Trinity's vaccines, thanks to an email I got from one of my friends Liz. So Trinity only had one shot yesterday and an oral vaccine. We feel really good about our decision and feel like we took the time praying and seeking what God wanted. I know everyone has their own opinion on what is right and what is wrong, but Shannon and I felt like this is what was right for Trinity. We are still waiting for our appointment on the 15th of July, at Children's in Detroit. I think this will be a good opportunity for us to get a second opinion and get some more advice on the different things that Trinity is dealing with (bladder control, leg movement, PT and OT).

Last weekend the Pella PDSN that Shannon works for had a golf outing to raise money for Trinity. This was a fun day of golfing and hanging out with friends. A special thanks to the Wittmer's and Gray's for putting so much work into such a wonderful day. The rain didn't stop anyone from having fun, there were around 40 golfers in attendance. In that 40 were some guys from Iowa and Nebraska, Nick Cross, Tommy Williams, and Wes True. They all flew in on Friday and surprised Shannon. After golfing we enjoyed an evening at the Gray's hanging out. The picture below is of the group of golfers.

On another good note, Aubree is potty trained!!! YEAH!! She is doing really good and has had very few accidents. I guess she just wanted to make the decision on her own. Enjoy the rest of your weekend and we hope you all have a safe 4th of July!!
Love~The Arthur's

"GOD IS AMAZING!!!"

2008-06-17T21:01:00.000-05:00

By the title of today's post I am sure I have you on the edge of your seat! God has truly blessed us over and over. We sit back in amazement of how he is working in our life. Every week I start with a fun filled day of calling the insurance company and hospital/doctor offices to discuss bills and things that are not being paid. If you remember back to a couple months ago when we had Trinity's third surgery with the plastic surgeon we had said that our insurance company was not going to cover it because it was out of our network. Yesterday I talked to the insurance company about all that we needed to get our appeal started and to try and get this bill paid. They wanted a letter written from the plastic surgeon stating what he had done to Trinity and that it was an emergency surgery that needed to be done ASAP and he was the only one available to do it. When I called the doctor's office to see if they would be willing to write this letter up the lady that I would work with in the billing department was not available, but would call me today (Tuesday). While I was getting ready this morning for our weekly play date with some girls from church I got a phone call from the billing department. I explained what I needed from them and with much surprise she told me that the doctor had talked to her a few days earlier about our bill. He wanted her to except what the insurance company would pay and to write off the remaining balance leaving us with nothing to pay. I had to have her repeat what she had just told me because I was in complete shock. The doctor told her that he knew we were very stressed about the financial part of the surgery and didn't want us to have to worry about it and stress over what the insurance company wasn't going to pay. Of course I broke down into tears and thanked her about a billion times. It just showed us what a big heart that doctor has and that he put Trinity's needs above his.
What an AMAZING GOD we serve, AMEN!!! I can tell you so many stories about the wonderful things he has done for us. In fact I am pretty sure we could write a book. From the donations that people have given us, the blessings of living in Michigan, the doctors that Trinity has, the friends and family, etc... So many people have taken time out of their busy schedules to help our family not feel such a burden with our finances. We can not "thank" ALL of you enough for your continued prayers and support. Everytime you pray GOD gives us a sense of peace that everything is going to be okay and reminds us that he is in control and will take care of us in every situation we are in.
On another note: Trinity seen her Pediatrician on Friday of last week. He was very pleased with how she was looking, but was a little concerned with her upper body strength. He recommended that we go to the Children's hospital in Detroit to see a group of doctors that work with patients with spina bifida. Yesterday I made the appointment and they will not be able to see her until the 15th of July. I was hoping for earlier, but we will take what we can get. She will see the Neurosurgeon before that so that makes it a little less stressful. In about a week and half she has her 4 month appointment. I have really been struggling with the immunization shots and what are the appropriate ones that Trinity should have and what are the ones that she really don't need. Please pray that Shannon and I make the right choice for Trinity and that it is what GOD wants and not what we want or others want. We have also started her PT and OT and we will be doing that on our own until school starts again in September. She really don't seem to mind it, but it is wearing her out at night.
Sorry I am so long winded, but I felt like there was a lot to talk about in this post. To those of you in Iowa, we are praying for you as you deal with the floods and all the tornadoes that have touched down.
We send our love to all of you and hope you have a great week!!
Love~The Arthur's

"Riding For Trinity"

2008-06-10T16:03:00.000-05:00

God is GOOD!! We can not express how blessed we are to have such great family and friends.
On Saturday they held a benefit for Trinity that started with a Poker Run (motorcycle ride). They had 179 bikers and served around 500 people for the supper. The total as of today that has been raised is a little over $12,000! For those of you that were there can attest to how amazing it was see all those people supporting Trinity. Shannon got the privilege of riding in the Poker Run. My cousins from Des Moines, Cindy and Danny, had an extra bike and let him ride it. It was an experience that I am sure we will both never forget. I followed and went to a majority of the stops. Everytime they rode by on their bikes and waved at us it just gave me chills knowing that they were riding for our little girl. We had so many emotions on Saturday. The love and support that we feel from our family and friends is so overwhelming. Even after being gone from the community for almost a year you all made us feel like we were home! We owe a special thank you to the "Co-Line Team" for all your hard work to make this a huge success. We have provided some pictures from Saturday.
Once again "thank you" to everyone for making Saturday such a huge success!!
Love~The Arthur's

*Trinity*

No More Neck Brace!!

"I am your Strength and Shield"

Prayers Needed!!

Happy New Year

It's a Penny!!

No Coin

Trinity the Piggy Bank!

Surgery Done

Revision Surgery

Spinal Rod Detached

Fun at Sunday School!!

Still Vomiting :(

Prayers Please!

We Are Home!!

Day #4

Before and After Surgery X-rays

Surgery and Recovery

Surgery and Updates

Surgery?

Busy House!!

Growing Rods vs. VEPTR

Many Updates!

Happy "3rd" Birthday Trinity!!

Crazy Busy!!

It's A Boy!!

Changes @ the Arthur Household

Changes in the Arthur Household!

21 Pounds!!!

Orthopedic

How are things going?

1st Night Home

Day 3

G-Tube

Day 2

Colon Cleanse

Urologist

Too Busy?!?!

Appointments/Updates/Birthday

Frozen Tundra

Strabismus Repair

Change in Schedule

Here is to a New Year!!

Update/Pictures

Trinity Home

Day #4

Day #3

Post-Operation

Surgery

Untether

Update

Many New Updates!

Pictures!!

Update

Shriners & Swallow Study

Trinity's Caster Cart

No Title :(

MRI

Pneumonia and PT

Many New Updates!!

Scoliosis & TLSO

????

Post Surgery

Surgery on Monday

Shriners Visit and Easter Weekend

"We Appreciate You"

Physical Therapy

When is Spring?

Trinity's Special Day!!

Happy Birthday Trinity!!

Happy Belated V-Day!!

"Rejoice Always"

We Are Home!!

Recovery

Surgery/PICU/Pediatric Unit

Shriner's Hospital

Happy New Year!!

10 Months Old

Merry Christmas and Happy New Year!!

MRI Results

Trinity