Last week I took Alex to the doctor for a check-up and to mainly be referred up to Children's hospital. They were able to update his shot records and start the ball rolling for Alex to start seeing the necessary specialists up at Children's hospital. He had two shots that day and boy did he scream! Since it looked like he had gotten shots in his right leg before and I thought he had very little feeling in it because it is paralyzed to a certain point, I asked them to give the shots in that leg. Boy was I wrong--- Alex felt every bit of those two shots poor little guy. Thankfully, a sucker took his mind off of the pain right away and I was able to give him some Motrin in the car.
Just yesterday I took Dennis up to Children's hospital for a check-up with the plastic surgeon who also happens to share an office with the neuro-surgeon that Alex has been referred to see. When the office called to confirm the appointment for Dennis, I had asked them if the referral had come through for Alex yet so that maybe I could have both boys seen on the same day. They said no and so I figured I would be making two visits very close together.
Then surprise! When I got to the office for Dennis, they informed me that the referral came through and that the neuro-surgeon could Alex that same day after all. Praise the Lord!
Alex is thirty-two pounds-- a whopping four pounds heavier than Dennis. The neuro-surgeon said that Alex is most likely lumbar-sacral-- whatever the heck that means. I guess it refers to the location of the lesion. He let me know that he was referring Alex to the Spina Bifida clinic that is in the same Children's hospital (another praise) and that he has ordered up an MRI of his head and back, and an x-ray of his hips. He thinks Alex will walk with braces based on where the lesion is and the fact that he can stand and somewhat already walk--- yet another praise. At the Spina Bifida clinic Alex will see a Urologist and an Orthopaedist and other specialists to address his needs.
Alex for the most part seems to be taking everything in stride and his mobility is continuing to improve everyday despite having any medical intervention this far. It is encouraging to see he has such a will to be like his siblings.
I took him to have a TB test yesterday and I am pleased to see that there is no reaction like I thought there might be with most Eastern European children being vaccinated with the BCG vaccine. Dennis seems clear too.
If I had to share the hardest thing there is in caring for a child with Spina Bifida, I would have to say it is the bladder and bowel incontinence. I have been reading up on these things and have joined a few support groups--- and a few wonderful parents of children with SB have kind of taken me under their wings. With Alex being four years old already and about to start pre-school, I am trying to get Alex on a bowel management program where he can get used to going to the bathroom at a certain time everyday. Though he is more than willing to try-- we have not had much success yet--- though it is still very early in the game. We will just have to keep working on it together.
Other than what I have shared, Alex is a normal, healthy, bright four year old boy and his smile and laugh brightens up the room.
He is a joy to have around.
