So, I have good days and bad days in terms of coping with our situation. Today has been a bad day. Lots of tears. I picked Eve up from school and snuggled with her on the floor. She tried to crawl to me and really just wiggled her butt and tried to move forward the foot or so to my arms. I sat her up in the Backjack chair (a floor chair with back support but no sides) to give her some Motrin because her last molars are cutting through on the top. She just sort of slumped to the right side. I straightened her up and in about 15 seconds she was slumping over again. In August, when we got this chair she could sit upright and stay that way. She seems to slump over in every chair now(high chair and green cube chair, too). Then she started to whine and I wasn't sure if she wanted to get on the floor or what. So I laid her down and of course she cried. I sat there rubbing her back and crying with her. I just think it's not fair to her. This poor kid didn't ask for this. I think I am also very scared about what this could be. If it's not CP, what is it? Jim and I talked about it tonight and he said he's been trying to figure out if there has been a turning point. She used to do much more. We can't think of one. It's only when we look back at pictures that we realize what she can't do anymore. Here's an example:
This picture was taken when she was 7 months old. Granted, she was placed in sitting, but look how straight she is sitting with her arms out. This next picture was taken when she was 15 months old.
Not only is she able to sit up straight, but she can drink from a cup without losing balance. Today it takes every ounce of concentration and effort to stay upright and not fall over. And she usually does fall over.
I am really worried about this kid. It's a constant strain to make sure I am searching all avenues. The good news about letting it get to me and having a bad day is that a better day is on the way. I seem to go through peaks and valleys, so at least I know I'll feel more positive soon.
1 comment:
Duchess,
I hear you! I feel your pain and heartache. I am just so saddened by the terrible things that you and Jim, and another set of my friends are going through with their tiny ones. The other set of my friends are, as I write, preparing their three month old for his second major heart surgery. I am sorry to say that I am (actually, I have!) losing so much of my faith in the past few years. It is unfair, ridiculous, maddening, downright freaking wrong, that such wonderful people (You, Jim, Eve, Jon, Julie, and Patrick) should all have to suffer such heartache. Luckily (if you can call it that) my friends Julie and Jon discovered their son, Patrick's, problems in-utero. It still doesn't make anything better, but at least they are at Children's Hospital, Boston, with a superb team of physicians. You do need to get to CHOP as soon as you can - if only, as you say, to rule stuff out. I suppose it is silly of me to ask, but has genetic testing been done? Julie and Jon discovered that their son's problems are genetic in the sense of mum and dad's gene pooling. I just do not understand why Eve seems to be retro-stepping (don't mean a pun, honestly!) It is maddening enough for me, I just cannot imagine how many tears you have shed. Hang in there mate - you are allowed to lose it whenever you want, but Eve needs you to be strong. If I scrape back some of my faith (it is bloody hard though) I know that you and Jim are the right people to have been chosen to be the parents of Eve - "He" / "She" knows you can handle it - you were chosen. Is that sappy? I really don't mean it to be, and I firmly believe in the destiny of which parents, have which children. I had better go. I think I am sounding whacky - see what happens when you get old? Anyway - oodles of love coming through cyberspace and through the air - xxxxxxooooooo Queen K.
Post a Comment