Finn is the busiest child. Ever since school started we do not get a day off until the weekends. Poor guy has to work 5 days a week just like an adult. School is going well for Finn. He knows the days he has school because he ends up waking up at like 5am. It's like he is so excited to go. Non school days he sleeps in until 7. He has a little girlfriend in his class. She stays next to him a lot of the day and gives him hugs. It is one of the sweetest things I have ever seen. She is one of the developmentally 'on track' kids in his class, which makes my heart swell up even bigger. Ahh young love...
Finn has been in speech therapy for a couple of months now. Progress is real slow. His therapist noticed that sometimes Finn coughs when he is eating so she told us we needed to have a video swallow study done. Her concern was that when Finn swallows some food may be going into his lungs instead of his stomach which is a reason why he could be coughing. If we find out this is the cause for the coughing then he would more than likely need a feeding tube. CRAP. Well luckily, I know my kid more than anyone and I told her that he does not normally cough often during feeding time...but she still insisted in a swallow study....So we had that procedure done in the beginning of October. All it involved was him swallowing barium in applesauce and in a bottle while the OT's watched the food go down his throat on the x-ray machine. GOOD NEWS! Finn's food is going exactly where it should be going. He is not aspirating when he eats. Ok awesome...at least I don't have to worry about a feeding tube! Before we left the swallow study, the experts told me that they are referring Finn to the feeding clinic in Dublin. They said because of Finn's 'poor motor development and poor weight gain' that they think he would benefit from seeing them.
Usually it takes months to get into the feeding clinic, but Finn got in 3 weeks after our swallow study. We just had our appointment last week. Finn and I met with a team of experts on how to get Finn's weight up. The experts on the team consist of a pediatrician, a nutritionist, psychologist, and an occupational therapist. Finn has weighed 23lbs for the last year. He is hasn't been on the weight charts for months. So their main goal is to get Finn on the charts, in addition to improving his motor skills, and shortening the length it takes me to feed him. Every time I feed Finn it takes me an hour. No matter what he is eating, what time of day it is, how hungry he is...it always takes me a hour to feed him! It is ridiculous. And it is not because he is crying or fussing...he just loves to talk and kick and dance while also trying to eat. The team said that some kids just don't enjoy eating...something I can not relate to. Anyway, they gave me some advice on how to shorten the length of meal times, things I can add to his meals to add extra calories (butter, gravy, peanut butter..) and then they tell me they want Finn to start drinking Pediasure....but not the Pediasure I can buy in stores...no no...they want me to buy Pediasure 1.5 that can only be ordered online...I got flashbacks to when we had to order Elecare for him. Pediasure 1.5 isn't as expensive as Elecare, but it would cost us $150 a month. That is a lot of money...Ethan and I racked up so much debt on our credit card when we had to pay for Elecare...now they are telling us we have to go back to spending that much money on just a drink for Finn? They are working with BCMH in hopes to get the Pediasure covered, but they didn't cover Elecare so I don't have high hopes that they will cover the cost of Pediasure. It makes me so angry that Abbott can charge this much for food. It really should be a crime. They also started Finn on an antihistamine in hopes it will make him hungry. Then they told me they want me to contact his neurologist and get his seizure medication changed. They think the Topamax could affect they way food tastes. I am very uncomfortable changing his seizure medication. Finn has always had eating issues and I have not noticed his eating habits change since he has been on the topamax. If it's not broke, don't fix it...and I really don't want to go switching medications if we don't really need to. In the end they want to see Finn back for a weight check in 8 weeks. We are going to try all these things in hopes of getting Finn to gain weight...if that doesn't work then they told me that a feeding tube might be in his future. CRAP. Not this discussion again...well hopefully the Pediasure works. I am crossing all my fingers and toes...
Then today we had an eye doctor appointment. Finn has a lot of specialists that he sees on a regular basis, but going to the eye doctor always scares me. I am gun shy..I never know what he is going to tell us. Today's visit wasn't too bad. We've had worse. Finn's eyes have not changed. But his doctor wants him to go see a Low Vision Specialist. This person will tell us what kind of school Finn should be in, if he needs magnifiers, special lighting..stuff like that. His doc said that Finn should probably not be in a mainstreamed school. He mentioned that it is a possibility that Finn will need to go to the Columbus School for the Blind. My heartbroke. Maybe I am just being naive, but that thought never even occurred to me. My poor baby. But it's a good thing we are talking about all this now, since Ethan and I are planning on buying a house this Spring, it would be nice to know where Finn should end up when it comes to going to school. We will know more after we see this specialist, which I guess is kind of a long wait.
That is pretty much everything that has been going on in the world of Finn the past couple of months. Needless to say, he keeps me busy...
