So Many Issues for Such a Little Guy September 25, 2007
I wish so much that Adam didn’t have to deal with as much as he does. I know it’s exhausting for me. I can’t imagine what it’s like for him.
It looks like we get to add another specialist to the ever growing list. Last week we noticed that Adam’s eye was involuntarily moving side to side at a rapid pace off and on for a few seconds at a time. We consulted Dr. Google (oh, what would we do without our Google medical licenses?) who suggested that this was a condition called nystagmus.
I brought Adam to the pediatrician on Friday, and he confirmed Dr. Google’s diagnosis and referred him to a pediatric ophthalmologist. Their first available appointment is on October 1st, so that’s when we’ll be going.
There’s no way to know what is causing this or the severity of the situation right now. Hopefully seeing the specialist will shed some light on that. For now we’re just hoping so much that it isn’t serious. I’m doing my best not to dwell on worst case scenarios here. The worrier in me can’t help but shudder at words like “brain tumor,” though. There’s a chance it could be no big deal at all, so we’re holding out hope for that.
Adam’s been reacting again, and as a result we’ve added strawberries to the forbidden/reaction list. The list of things I can eat is growing shorter and shorter, but I don’t hesitate for a second to keep up this diet.
If that wasn’t enough, it looks like Adam is getting a new helmet. I brought him in yesterday to have it adjusted yet again since it had been leaving indention marks on his forehead. When I got back home and got to see how it was fitting on him it was obvious that it had been way over adjusted. It was shifting all over the place, and I was pissed.
So, I called the orthotist to let him know how frustrated I was with the current fit as well as my displeasure in the fit from the beginning, and he offered to have a new helmet made for Adam at no cost to us. (Which is a good thing because the last thing I want to do is shell out another $3200 at this point.) We have to go back tomorrow to have another head scan done, so they can have the latest measurements to make the helmet from.
It’s frustrating, because I feel like we could have gotten more progress already if his helmet had fit right from the beginning. Plus now he’s going to end up being in it longer than anticipated. Oh, how I hate that piece of plastic.
He’s also being attacked by the teething monster at the moment. Tooth #2 just broke through, so I hope that means he’ll get a little bit of relief soon before tooth #3 starts getting him.
I just feel so badly that he’s having to deal with all of this stuff. Sometimes it just feels like too much for one little guy to have to handle. Despite it all he’s such an amazing little man who manages to melt my heart on a daily basis. I hope one day in the near future all of this will be behind us and he’ll just be able to be a kid. He deserves that.
- Posted in : our main man
- Author : amanda
Comments»
Man, it just keeps coming, doesn’t it? I am so sorry that you are still dealing with all of these issues, and that new ones have been added to the mix. Adam is such a sweet, gorgeous little guy with such a lovely disposition–I know he’ll come through all of these challenges just wonderfully!
Hope all works out with the eye stuff. Sorry to hear you guys are still struggling. Take care
Oh, your poor little guy, Amanda. He is a brave one.
Good luck with the specialist. I hope it turns out to be nothing. xx
Oh Amanda, I’m sorry you have something new to worry about. It sucks to have that worry and not just be able to fully enjoy our babies. Just from seeing Julia deal with her stuff…kids are so resilient! It’s the mommies that suffer more, believe me. Fingers crossed that the eye thing turns out to be nothing serious.
And kudos to you for continuing the breast feeding. You are such a good mom!
Hi Amanda..I’ve been a lurker, but I just wanted to say I am so sorry Adam is going thru so much. I hope everyhting works out and as you said, put all of these behind you.
Good God - when will it stop? Sorry Amanda, things should be a lot easier, eh?
Oh Man, its just keeps coming. I am so sorry you and Adam are going through all this. (oh and your hubby too!) There is an end somewhere. Sometimes when it gets dark for me I remember how far I’ve come –and all the things I’ve come through. That gives me courage.
Oh Amanda, I am sorry you guys are dealing with all of this. Adam is a tough little guy : )
Hope your worst fears remain just that. And that then they go away.
Adding my voice to the chorus of hoping that Adam (and you and Dan) gets through all of this (and he and you all will) and soon. I do agree that kids are super-resilient and that it’s the parents who take the brunt of it.
Also, one thing I wanted to mention, when we were in the midst of dealing with J’s torticollis, she was sent to a pediatric opthalmologist for a consult. It seems that there is a correlation between eye “issues” and torticollis that necessitates definition–in that A) is an eye problem causing the torticollis, or B) is the torticollis causing an eye problem? That’s all I seem to remember of it now, looking back, but we did get followed by the ped opth until J was a year old as part of the specialized care she rec’d (craniofacial plastic surgeon, ped opthalmologist, orthotist, and PT) for torticollis. I’m sorry I didn’t bring this up to you in previous comments.
Here’s hoping that Adam’s situation is nothing big, nothing bad, and worst case scenario, nothing that an eye patch or a pair of glasses can’t “fix.”
Hang in there. :-)
Hoping and praying all goes well with the ophtalmologist - and that SOON things start looking up for you all.
I hope that maybe this gives you some peace and I’m honestly not trying to give assvice. Most of the time, children who have had issues like these don’t know it’s not “normal”. I’ve got a disability and one of the remarks that I always tell people who tend to feel sorry for me is that I don’t know what not hurting feels like (part of my disability, although I hate the word disability), so it’s not like I’ve lost something. I’ve always had these issues, so I don’t know how your average joe feels. And my parents tell me that even though I consistently had issues which required splints and doctor’s appointments and specialist, I was a happy go lucky kid that never seemed to slow down. It may be the same with Adam (except for the stupid helmet, that OBVIOUSLY bugs him). I’m so sorry that things are so hard for you guys, you are an AMAZING mom to be doing all the things for Adam that you do. He’s lucky to have you as his Mom. I hope that you guys get some answers with the specialist and that Adam starts feeling better soon!