Wednesday, August 24, 2011

2 year old check ups, Physical Medicine, and Botox

I've had Jacob on my homemade formula for about 2 months now. I was just sitting here calculating how much it cost to make his food. I was thinking dang I spend a crap load of money to feed him! It is $229.38 for 30 days according to my grocery receipts, so that is only $7.64 a day. I guess that is not so horribly bad. Heck it can cost me $20 alone to feed the people who eat by mouth in my family for 1 day. He is doing well on the formula. He just vomited, but it was the 1st time he vomited in a few days. When he is on commercial formula he vomits almost every day if not more than once a day. He is definitely gaining weight on it as well. I'm actually going to cut back on the amount of oil because he may be gaining to much weight. He has gained more than 2 pounds in the past 2 months. He weights more than Andrew and he is taller. I changed what I feed him a little bit now he gets 3 jars of meats, 5 jars of fruit and veggies (usually 2 of each and 1 that has a fruit and a veggie in it) 6 tablespoons of rice cereal, cutting back to 1 tablespoon of canola oil instead of 3, I have also cut back from 2 cups of Kefier(milk/yogurt with probiotics) to 1 1/2 cups since I was having a hard time getting him to consume the entire amount in 1 day. He gets 1 drop of Poly-v-sol drops and 2 tablespoons of Bragg's apple cider vinegar (apparently helps with reflux)

On to the boys 2 year old check up:
Andrew: 25.4lbs 12%, 35 inches 58%, and 47cm head 10%
Jacob: 27.5lbs 39% (well, at least he has something on Andrew :-))35 inches tall 58% 47cn head 0%

Andrew is caught up! He is doing everything a normal 2 year old should be.

Jacob had his post op ENT visit today. All is well. He is allowed to start his feeding therapy again and start attempting to eat by mouth.

Jacob also seen the physical medicine doctor today. We had a lot of concerns with his hips and legs. His legs are scissoring more and his right leg appears to be about a 1/2 inches shorter than his left leg. He was examined and they measured his legs. Sure enough it is 1/2 shorter. His right leg in particular is the one contracting and scissoring over his left. He is at his max doses on his baclifen, so our only other option she gave us was Botox. He goes to have Botox injection in the back and side muscles of his leg and in his biceps on Monday.

Jacob also got a new loaner gait trainer today. It is a bigger size and he fits it better. It has these nice arm rest that his arms strap to making him stay up straighter. I love it!

Still waiting for his equipment to come in we ordered months ago including his wheel chair. Still no word on his medicaid status. :-( As of now we are paying everything out of pocket for co-pays etc. We actually had to cancel 1 of his doctor appointments this week due to the costs. He had 4 appointments this week. 3 specialist $35 each and their primary $15 each and both boys were seen. His medications I had filled this week cost $ I had divided up because I have to pick it up every 10 days so instead of $65 it is $22 every 10 days ($2 discount for getting it all at 1 time) His inhaler needs to be filled. That is another $45 so it is go to have to wait until next pay day. Ugh!!! Sucks that I am being punished for trying not to rely on the government for my son's medical needs. Because I have private insurance on him and his medicaid is gone there is no other government program that will pick up as a 2nd insurance expect medicaid. If I would not have had private insurance I could have signed him up for Medikids, but then he would have went without insurance period before I could apply. This whole situation suck, and their really should be better programs for children like him :-(

Ava has been in a Pre-K 4 program for 3 days now. She is really enjoying it. She has not complained once that she does not want to go. She leaves and comes home happy. I'm sure it helps that Bryanna is with her so she is not alone.

Ava playing at the Genetic Doctor office that we were at for 3 hours last week!

Andrew cheesing for me way after his bed time a few weeks ago.

Daddy and Jacob today at the Physcial Medicine appointment

Jacob and Andrew at the Genetic MD appt last week.

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