It has been a very busy week.
Tuesday we had an upper GI exam for Jonah. It was an interesting experience. The radiologist kept questioning how I knew that Jonah had GERD (ha ha ha). I told him that Jonah had undergone every test possible confirming that he did, not to mention his nasty vomiting spells. He asked if Jonah had ever had pneumonia or was not gaining weight. I told him no and he assured me I did not need to worry about his reflux UNTIL he had Jonah drink water after his bottle of barium (I warned the technician he would not keep it down), Jonah threw up all over everything and managed to also hit the wall a few feet in front of him. The radiologist turned to me and said, "Oh yes, he has reflux and I can see why you are worried." Um, yes. Good grief, I guess it took for him to see just how bad Jonah's vomiting spells were to really understand the situation. I felt the exam was a bit useless as it really only confirmed what we already knew, yes it was good to confirm that nothing was wrong with Jonah's esophagus or the upper part of his digestive tract (we already knew his esophagus was fine from the swallow study he had a few months ago) but confirming the GERD seemed a waste of time. I hate making a four hour round trip road trip to find something out I already knew.
The week went on today as we traveled for the first time to the UCLA Center for Cerebral Palsy. We met with a team which consisted of an orthopedic surgeon, neurologist and physical therapist. It was very helpful and very informative. They did confirm much of what we already knew but we did learn some new, helpful information. The neurologist said that she felt there was definitely intelligence within Jonah, yes his body may have significant physical disabilities but he internally had intelligence and our job would be to help him develop that. Also, she said it was very important to help others realize that Jonah was an intelligent child and that they should treat him as normally as possible, even though many would at first glance think that he may not be capable because of his physical disabilities. They said that his muscle tone was good, not much sign yet of spasticity but the PT did say she saw some tightness in his ankles and to talk with our therapists about this. They were glad to hear we had some home equipment, including a stander. I told them we used it as often as possible and they encouraged us to continue this. Interesting enough, they discouraged the use of hip helpers. They said that the long term use of these could actually cause issues with Jonah's hip alignment and they encouraged us to use them only in a therapy setting. I asked about Jonah's hand splint and the PT encouraged us to again only use it in a therapy setting and not all day because Jonah needs the sensory input from using the hand as much as possible. They had very interesting views on the NAPA program. The PT basically said it was too expensive and not appropriate for a young child. She felt that the long term benefits were not enough to justify the cost and also pointed out that there is no research supporting that it is affective in young children. We asked about stem cell treatments and the answer was that the science is just not there yet and to not pursue any international or experimental treatments. The neurologist confirmed that Duke University would be our best reference for such treatments/research. We also asked about Childrens Madera and mentioned that we were seriously considering surgery for Jonah (the Nissen Fundoplication) and the orthopedic surgeon said that he was impressed with the hospital and that every child they had seen who had been treated there was well taken care of. This is always good to hear!
We also got some excellent tips from the PT regarding adaptive play equipment for Jonah. She is going to email us information about how to adjust one of our home lap tops so that it can play interactive software for Jonah and we are going to locate switches that he can use.
Of everything we discussed it seemed the most important message was communication and the development of Jonah's intelligence. Everyone stressed the importance of helping Jonah learn to interpret and understand his environment, to begin to communicate to us his wants and needs.
We have a lot to look in to but we will begin a few steps at a time and move on to help Jonah make progress.
Tomorrow we have therapy first thing in the morning, play group at 11:00 and I have to head to the grocery store to get ingredients for a salad I have to make for a church women's activity tomorrow night. I have a hair cut tomorrow afternoon and then feeding therapy at 4:00. Talk about a busy day!
We have had Grandma and Grandpa Langston this week and it is wonderful to have both, they leave on Saturday. We will all miss them very much. Next week Aunt Valerie comes in to town and then I will head back east to see her with my cousin Bonnie. This summer has just flown by!
I will post more later this week.