We headed out yesterday morning at 8:00 a.m. for our long awaited appointment at the CP clinic at Riley Children's Hospital and barely got back in time for church at 6:30. Tom had the best description of the day: "it was like drinking from a fire hose." So much information to process!! We started with an x-ray of Ian's hips, which look fine. Then, we saw an orthopedic doc, a pediatric dentist, a speech therapist, an occupational therapist, a physical therapist, 2 neurologists, a developmental pediatric nurse practitioner, and a wonderful pediatric doctor who spent lots of time with us and tried to bring it all together. Then, we moved to the rehabilitation area, where they made molds of Ian's calves and feet for his braces. They fitted him for a car seat, a shower seat and a new wheelchair! After all that, he had to have some blood drawn and we were finally free to leave. So, where do we go from here? We need to find an OT, PT and ped. dentist in Lafayette. Ian goes back to Riley for an MRI, a video feeding study and to see a urologist within the next few weeks. He will also have an evaluation in the speech dept. to see what kind of communication device would work best for him. He has little neoprene splints for his hands to try to keep his thumbs from pulling in and we learned how to appropriately stretch his hands. I need to get as many calories in him as possible because he is so thin and keep track of how much he eats and drinks for 3 or 4 days. Several of the doctors mentioned a feeding tube more than once and we are so hoping we don't have to resort to that. Although, the feeding study will help us know if it's safe for him to be eating and especially, drinking on his own (he tends to aspirate liquids, which isn't good for the lungs.) That's it in a nutshell. We were very impressed with the whole process and all the doctors and support staff were very kind and so good with Ian. He was a trooper and they all thought he was very handsome and cooperative. If we aren't careful, he's going to get a big head!!
Tomorrow, we have our first case conference with the school system to discuss the process of enrolling Ian in school and figuring out where will be the best place for him.
As always, we appreciate your prayers in this journey we are on! To God be the Glory, Great Things He Has Done!!!
A New Mission
5 years ago
So glad we know how to pray... and that Ian is here with you and is getting the absolute BEST care possible! Thanks for your toy advice too... what do you think about toy tools?! Trey seems to think he would love to bang them on his tray :)...
ReplyDeleteWell I don't know if you're looking for a new dentist but I would highly reccomend Dr Sakel. He is my dentist and we used to go to church together. Very kind and Godly man. Great dentist too!!
ReplyDeleteThanks so much for the update Angela! We know better how to pray for you all. I recommend Dr. Sakel as well!! He's great! We need to see him whenever we get back to Lafayette. Your blog keeps us all posted and I'm so thankful you are doing it!
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