So the past few weeks we have been fighting colds and croup going around. The girls got croup but Seth's cough has not turned into that and I am praying it stays that way.
This past month we have had a few doctors appointments.
We had a ear appointment where they checked to see if the tubes were still in place and they also cleaned out one of his ears because he has had many ear infections in that ear. They looks at the results from his last ABR and he confirmed that his hearing is perfect and that it should not go away. He will see us back in 4 months. This was a huge thing for me because he has been messing with his ears a lot and I was just worried that something was going on but it is just something that he does.
We had an appointment with CRS at St. Joseph where they did a full body pediatric exam on him to see what services he qualifies for. We were there for a really long time. The doc wanted all of Seth's information from pregnancy to birth to NICU to now. He qualifies for a handicap sign for the car he will have an orthopedic doc here and then all of his other doctors are part of CRS so we will see them all at St Joseph when we need to. They got me a prescription for pediasure which is a huge thing because it was starting to cost a lot of money and since that is the only thing he eats consistently it was getting quite expensive. He will also need to go to a wheelchair clinic and get fitted for one. I still have to call to schedule that one. March 4th he goes back to CRS for an ERG (eternal retinal gram) to check his eyes because of the seizure meds he is on.
We also met with his neurologist because his seizures are still happening quite often. Dr Bernes said to stay on the 4 meds that he is already on because the sabril is helping but we also got the okay to give him an emergency drug if he is having a lot of them during the day. We actually have had to do this about 5 times so far because he maybe had 30 within an hour.
PT has mentioned getting him a SPIO suit so we got the script from his pediatrician and got it into the ortho and we are just waiting on it. Also we are looking at getting him a stander which could take a while to get because she has to write a letter to the state on why he needs it. I get so frustrated with special needs equipment because of how expensive it is. I would love to get him this rocker that he would fall in LOVE with but it is about 2,000 dollars and we just do not have that kind of money or even special needs beds are anywhere from 1,000-7,000 dollars and thats just for him to sleep on and be safe. You would think for special needs kids they would know that you life is full of expenses that they would help in that area or the state would just make things easier but they don't.
I have had a hard few days with Seth and just trying to comprehend what our future will look like and there is really no way to do this but if I really think about it we have a long road ahead of us and lots of laughter, tears, and PRAYERS!