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!