No Title :(

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

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

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!!

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

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!

????

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

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!