Update

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!

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!!

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

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

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

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 :(

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!