So last week, we saw our favorite OT. It had been about 2 months since we saw her, just due to scheduling conflicts. He's been fine really, for him anyway. But of course I had my list, of things I think are wrong with him.
Here it is:
~his right shoulder, is like a ball
~his bicep is almost nonexictant
~the muscle/tendon in his armpit is SO tight, I worry I'm going to rip it, if I pick him up the wrong way
~his shoulder blades stick out, and are uneven
~his spine, disappears between his shoulder blades, then reappears and is "bumpy"
~his wrist bone, is pointey not round like most people
~his feet are still pronating
~his knees are starting to knock, due to said pronating
~he can't seem to get jumping OFF stuff. He can jump UP, just not off. No mind you, I am VERY happy about this, but still, he should be able to...no?
No here's the problem, NONE of this, is a problem for HIM!!!! NONE OF IT!! So I ask you...why can I not let it go, and not worry about it. Our sweet OT, is so good at..."KNOCK IT OFF!", or "Let's watch it". But we are both sick of, let's watch it.
As I told you in my last post, I'm now adding "shunt" to my list of worries. Everthing odd thing that happens, I think it must be his shunt. Maybe I should lie, and go to the ER and say he's having symptoms, and needs a CT scan. "Oh, well, he was acting weird last night, he must be feeling better now!" *rolling eyes* I can see his chart now, under diagnosis...hysterical mother.
Also, I feel like his right eye, is getting droopier. I have said this before, that his eyes, are interesting in that you can see the bottom of the whites of his eyes. But for some reason, occasionally, his right eye, top eye lid, seems to droop. Again...mountain out of mole hill?
Part of me, wants it all to resolve on it's own. The other part wants to start up with the never ending appointments again, and get this all figured out. I was thinking of taking the summer off from therapy. Just to see what happens. He's really only getting speech. Our "teacher lady" comes once a month, and plays fine motor and cognative games, while working on speech.
I know he's only 2, but I wonder, if the "pressure" of people constantly wanting him to do stuff, is making him not do it. Our OT agreed, taking the summer off, might be a good idea. I don't know, I'm still deciding.
As far as my list goes... Yesterday, he did this :) I sent it to her in email!
And she is worried/watching the knees, and thinks maybe his arm has the muscles attatched in weird places. What to do about it, neither of us know. She did say making him rotate his upper trunk would help with some of the issues, in stregthening all those muscles.So tell me, what is my problem? I was recently accused of "expecting my children can't do things." I have always TRIED to tell them they can do anything. That once they learn how, they can accomplish anything they want. Maybe this person is an idiot, maybe I am, and don't know I'm doing it. I did ask the boys, if they felt like I do that, and got a resounding NO from both of them. P said, "You always encourage us!" So that was nice. But I wonder if I do it to Jack too much.
I'm actually just typing out loud, maybe tomorrow when I read it back, I can make more sence of it. If you have any thoughts though, I'd appreciate it.
3 comments:
YOU are his mom! No one else. I know with my Bubba I am the one that found things and others said that I was just being paranoid. When i brought it up to the Dr.'s I was told I was right. As long as you feel like it really is a Watch and See kind of thing then its okay. If you feel like it really is serious THEN TAKE HIM IN! Zach does things AFTER we have worked on it for a million years and we move on to something else. Breaks are a good thing!!
The way you feel about the shunt is how i feel about Zach's Seizures. I have been told that I am not letting him experience life because I won't take him out side in the hottest time of the day and stay out there for 3 hours. *sigh* Call your Neuro and Talk to him about it. See if they can do a CT just for peace of mind. Its not going to hurt him and you will be able to move on or catch what ever is there if there is. It wouldn't hurt and you will be able to sleep better...
Sorry this is so long! You are such a great mom and I admire the things you do. I wish I had half the Spunk and talent that you do!
Stay happy!
Basically all I can say is that you are a mother of a special needs child and you will always worry. Granted you have a lot more worries about Jack than I do about Caleb. But the shunt is always a worry for me. My MIL even mentions that she forgets he has a shunt, well not me. After his last revision I went to the ER two months in a row because I was so paranoid. So I say if it makes you feel better go to the ER and lie because otherwise they won't do a CT, and I soooo wish they would come up with another way to check the shunt without a CT. And for us as far as therapy, he was having speech through PCMC, I totally quit that I never saw any progress and I totally agree about the pushing thing. The more we tried to get Caleb to do something the more he retreated. He still gets therapy at school and I think that is the best for him right now. So why don't you take the summer off and see how it goes. Also for me it is Calebs ear and the cholesteatoma crap that totally destroyed everything including hearing bones and was heading into his brain. You are not being a hysterical mother, you are just trying to give him the best life he can. Once when I was worried about a ear infection I called the ENT and of course he was out of the country and I said this is a serious situation and I think the nurse thought I was being a crazy mother. So I went to the ped if the nurse wasn't going to help me and while there I got a call from the nurse and she had had the other doc look at his chart and said we needed to get him on drops and oral antibiotics as soon as possible--NO KIDDING!!! So I say don't worry what people think, Jack is your concern and you need to do everything you need to do to have peace of mind. Wow this turned into a novel. Sorry. Hey are you going to the zoo?
I spend so much time doing this. And I get the whole "you are the biggest problem" from my DH no less. I feel that Kade is so close to being perfect why can't he be all the way perfect? It is hard to let go. Just wanted ya to know I'm there with ya! Love you!
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