Specialist appointments and first night away

The Trip

Alexander had two specialist appointments on Monday in Morgantown, WV.  Morgantown is a 4 hour drive from our home and we drove there on Sunday night so the kids wouldn’t be tired and cranky during the appointments.  Riding in the car for extended periods of time is hard on Alexander, as he can’t re-position himself to get comfortable like we can.  We try to break up driving trips and plan ahead as much as possible to keep him comfortable.  We stopped about 2 hours into the trip on Sunday at Chuck E. Cheese to reward the bigger brothers for good behavior in school and good sportsmanship in soccer.  Alex was really excited to see all of the games and colors and flashing lights.  He loved watching the Chuck E. Cheese character when he came out for the birthday parties.  It was a little disappointing that Alexander could not really play the games.  His wheelchair bumped up against the console and there was no space to roll underneath.  He could not reach high enough for the games either.  We are sadly finding most recreational places are NOT wheelchair friendly.  Our kids deserve to play too!  I’m going to be writing a letter to the company requesting them to consider putting more accessible games and entertainment for our disabled kids.

They had a little climbing structure for toddler age children.  I climbed up the steps and sat Alexander in front of a little steering wheel with a mirror behind it.  He thoroughly enjoyed watching himself and making funny faces as he turned the wheel.  One other thing he enjoyed was to roll his wheelchair around the games collecting the tickets  that other kids had walked off and forgotten.  He thought it was quite amusing!

tickets1 tickets2

We also made a quick stop in the Toys R Us next door.  We purchased a new car-seat for Alexander.  They are having a car-seat trade in event where you trade in your old car-seat for a 25% off coupon.  Alexander now has a new comfy seat that will hopefully help make trips more tolerable for him.

The appointments

Our first appointment of the day was with the gastroenterologist.  This was our first appointment with the gastro so I wasn’t sure what to expect.  He asked us how Alex was doing with feeding; luckily he is doing well and hasn’t had much choking yet.  SMA kids can lose the muscles used to swallow which can lead to choking and aspirating.  He was concerned with Alexander’s weight since he hasn’t really gained much weight since around 18 months old.  The doctor wants us to put in even more effort to get some weight gain so that he will be back on the growth curve.  If he doesn’t gain enough weight, we will look at appetite stimulants and even a feeding tube for nutrition.  All of my children are naturally very thin, so getting them to gain weight is challenge.  I don’t feel that Alexander is too thin personally (especially when I compare him to my older son who is much thinner).  I guess we will wait and see how it goes and make the necessary decisions as the need arises.

He ordered lots of blood tests to be done.  He tested for Celiac disease, zinc levels, Vitamin D and iron levels.  We should get those results in two weeks, but we won’t see the doctor again until 4 months from now.  I hate when Alex has to have blood drawn.  He has such tiny veins and always gets stuck more than once (the most being 4 times in one attempt to draw blood with them giving up and sticking his foot).  I have to hold him down while he screams and cries “mommy, pick me up!”  It is absolutely heart breaking.   I know how much it burns when they are pushing the needle in and out trying to find a vein.

Our second appointment was with the Orthopedist.  He looked at Alexander’s spine, legs and arm bones to see if there is any curvature.  Right now, Alexander’s bones are correct.  SMA kids can/typically get scoliosis which causes pain and causes trouble with breathing.  He talked about placing rods in Alexander’s spine when we get to the point of needing to correct the curvature.  He showed us some stretches to do on Alex’s legs and hips to keep them loose and not contracted.  He advised us to not let Alexander gain too much weight as it makes it harder for Alex to retain freedom of movement and it is harder for caregivers to take care of him as he gets heavier.  He didn’t see any problem with the wheelchair we have for him and actually thought it was pretty great for him.  He said we need to keep him as active as possible and encourage moving himself as much as we can.  This was a point of disagreement between our physical therapist and ourselves.  The Doctor’s feedback made me feel like our choice to purchase the Panthera micro wheelchair was the right one.    Being the parent of a disabled child is hard in so many respects, but one of the harder parts is making decisions that affect them in a big way.  You are constantly second guessing yourself, and wondering if you are doing the right thing for you child.  We will see the orthopedist again in 6 months.

chucke1 chucke2


A night away

Alexander spent his very first night ever away from Mom and Dad two Fridays ago.  Jamie had to have emergency surgery for appendicitis and we were at the hospital until very late at night.  My parents happened to be camping 30 minutes away and picked up all of the boys that day for us and took care of them.  I missed him so very much that night, but I think it was a good experience for him to get to stay all night with Grandma and Grandpa.  They were camping too, so it was extra fun for the kids.  Daddy is feeling much better now too!