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!