SO I stressed and stressed over this appointment. I get so nervous about what Jonathan should be doing and what he is not doing, how he needs to gain more weight and blah blah blah. Well it went far way far better than I could have imagined!
We arrived at the PM&R office and I do LOVE this doctor she is very well educated on cerebral palsy and the different options we have, in regards to spacticty, pain, therapies ect. So at a developmental appointment we see pm&r, dietitian, social worker, p.t, o.t, s.t, orthodics guy psychiatrist and a special education teacher! This appointment lasted 4 loooong hours but I loved it!
First we started with the dietitian and she looked at the blended diet I have Jonathan on and she said" where did you get this recipe"? I said I educated myself and started natural supplements and organic foods(liquids). She said "hmm, well your doing everything right, he gained 2 pounds in 2 months and he has all the necessary vitamins minerals and food groups!" His growth chart looked pretty impressive on the cerebral palsy curve, he was in the 60th percentile for weight and 97th percentage for height! She had nothing to add and told us to keep up the good work!
Next we seen our favorite doctor in the world! She had two interns with her one from Duke hospital and one from Cincinnati Children's hospital! She said to these doctors "We have 5 patients today and of all the patients you see I want you to hear this little boys history!" She went on to tell them about being a preemie then coming home doing everything on target getting the rotovirus vaccine, going blue needing blow by oxygen and then 1.5 months later getting the pertussis vaccine and everything went down from there! SO I even learned something at that appointment, she believes it was a combination of the rotovirus and pertussis vacc. because of the severity of Jonathans condition. The two doctors stood there stunned, I was even stunned that she told the other doctors! They wanted to learn more about Jonathan so we talked for a bit. Then she told them about out "non-conventional" therapies and how well they are working for Jonathan, HBOT(hyperbaric oxygen). She seen Jonathan in November 2010 and he was tight, very tight. We started hbot the end of December and seen her in Jan and she took Jonathan and bent his legs up stood him up and then put him in a squatting position and he used his muscles not tone to lift up and bring his head up!!! The two doctors were amazed and our doctor has said that hbot has worked for some of her kids but not as drastic as it has for Jonathan! She also told them she stands completely behind her prescription for Jonathan to get stem cell treatment! She really believes we would have to do it twice because she has SEEN great results from kids that have completed 2 treatments of stem cells! (Now we just need to continue to pray that we find the right place to go and God will lead us there!)SO for those of you this doctor is an md its not a holistic doctor and she does not recommend these therapies to anyone, she believes Jonathan would greatly benefit from stem cells! The two other doctors in the room were besides themselves for the next few minutes with us, asking million questions about hbot and stem cells, it just proves that doctors "practice" medicine they don't know everything!
Next we seen the social worker, psychiatrist and teacher. They preformed a cognitive test with Jonathan and he had 3 options and then he had to pick the picture they would call out using his eyes and a couple other things. They then had us wait (outside the door)while they talked and then told us to come in and told us that they DO NOT APPROVE the classroom he was in this past fall, they liked the idea of the equipment they had there but did not believe he would reach his potential and grow in that setting! They said that they wanted him to be in a typical preschool and the state will/has approved him an aide just for him! They will take care of his needs. And they have all the specifics written down for his next iep for ex. they want him in a low chair so when its circle time he is at every kids level, they will provide a pony walker or such so he can play in the gym with the kids and ect. I was teary eyed my little man will be like all the reat of the kids! If and only if we want to take Jonathan to the other school to use the hopsa and other equipment the school will provide transportation to the school for a couple hours with the exception that one of the kids in the other classrooms that are verbal can come down and talk with Jonathan!! What a great thing to hear and they WILL put up a nice fight if Jonathans needs are not met! By the way he tested at or above a typical 3 year old!!
Then there was the physical, occupational and speech therapists. We kind of already knew what we need to do in those departments because we have the best therapists! SO they want us to get Jonathan into somewhere that has augmentative communication, which we are through the university when they have an opening this month or next, we need to do more occupational therapy and with physical therapy, Jonathan will start getting kinesio taped on his right upper shoulder, we tried this before and he had a skin reaction so I wanted to try again. Here we are 5 days later with a test tape and no reaction so this will start this tuesday with full taping. They want him to get the theratog and a neck ring. He is going to start trialing a power wheelchair this Thursday! They also want to talk about getting him a kid walk, he did really good in it however they think he would do even better if he is getting taped and has a theratog on! His afo's were still good, poor guy is still in a shoe size 4 w/o afos and with they are only a 5! Grow feet, GROW!!
THIS IS A THERATOG SUIT!
So that sums up the appointment and I couldn't have been happier. EVERYTHING was great and the suggestions were awesome. Can't wait to get started with all the new things he will be trying!
Thanks to everyone that keep my family in prayer, because its working he's listening!!
