Cerebral Palsy - Part 3

Blood tests - Normal
Liver function - Normal
Enzyme tests - Normal
Hormone levels - Normal
Chromosone tests - Normal
CT Scan - Normal

Baby who cannot sit up and has fists clenched and toes curled at all times - NOT FRIGGIN NORMAL

Let's see... So the first six -twelve months consisted of all the tests, not one single person discussed or mentioned what we could be heading for.

I had been researching on the internet and thought we were looking at CP but nobody would confirm that.

As part of the issues with Bug's foot and the way it had been folded and tucked the tendons had been stretched too much on the outside and were too short on the inside. We had a tiny little brace made to keep his foot at 90 degrees to allow the tendon on the inside of the ankle to stretch and to let the tendon on the outside shrink up a little. Our instructions were to keep this brace on basically all the time, 23 out of 24 hours.

The OT that made this little brace for us, made it with her bare hands, cupping bug's foot in her hand and moulding the plastic around it. I remember her having trouble with the plastic being too warm and being too pliable. I thought she had corrected everything, as she didn't say anything about coming back if there was a problem.

For 2 months EVERY day, ALL day I dutifully strapped my little boy into this little brace, every day I stretched his foot and strapped him in this brace because to me this was something I had to do to ensure he MIGHT have a chance to WALK someday.

Then at one of his therapy sessions when the therapist took a close look at this foot she noticed that in the brace there was a little hump and that hump had effectively pushed all the muscle from Bug's heel off the heel into the arch of his foot and basically DISFIGURED his foot.

WHAT THE F***! I had been strapping him into that thing, thinking I was doing a good thing and I had wrecked his foot. Now I know in my head that I am not to blame but I tell you it took 2 years before my heart would believe it and everytime I open his keepsake box and I see that nasty little thing all those guilty feelings come rushing back.

Needless to say, we marched down to the OT department and threw a little hissy fit and had a new brace made, which took over an hour, and I made her start over again 2 times. I was not taking any chances.

This is the first time I remember feeling the weight of my situation, no one else was going to be able to look after Bug and his treatment except me! I was going to have to make all the decisions, research all our options and make sure everyone is doing their GODDAMNED job properly!

This is not to say that Hubby was not or is not involved. He is very involved. He takes bug to therapy, he attends all invasive treatment appointments (needles, CT scan, etc) He reads all the therapy notes and all the letters from the doctors. We discuss all the research I do and we come to a decision together.

But don't kid yourself, I believe I lose more sleep over it than he does, because I think, he thinks,, I know what I'm doing.

The first time I heard Cerebral Palsy was in a very good way! BugaLoo was about 8-9 months old, I had asked the therapist outright "Are we dealing with Cerebral Palsy". Physiotherapists are not allowed to discussed diagnosis, she told me, "However, BugaLoo does not present like Cerebral Palsy, but I can't put my finger on it."

Little did I know I was going to hear alot of that in the months to come.