The past few weeks have been interesting around here.
Not only has Max developed quite a testy (and that is putting it mildly) personality, he has also been troubled with a some infections (eye and ear) and congestion. Nothing serious but difficult to manage with the hearing aides and facial palsy issues.
(*I don't think the medical and behavior issues are related since the behavior started about two months ago.)
Then on Friday night, he woke up uncomfortable and continued to vomit non-stop for the next 12 hours. Vomiting isn't fun for anyone, but even worse for a lil' kiddo who cannot safely swallow liquids. (He doesn't haven't enough of a coordinated swallow or a protective cough, so liquids go into his lungs.) Fortunately we did have a nurse that night and it took the two of us to keep Max from aspirating. And I spent a good chunk of time just trying to empty (sorry to be graphic!) his tummy via his gtube. (At one time I was so terrified of Max having this artificial device, now I am continuously grateful!)
So we'll see. He is sleeping still (which is very odd since he usually wakes up at 5 am) and I am HOPING he wakes up in a happier, gentler mood and is feeling great.
The attitude thing concerns me most of all. I think I have written before about the behavior issues that are very common with CHARGE syndrome. They are often quite severe. Quite honestly, this scares me just as much or more than the medical issues. There isn't any "fix" to a behavior issue...just a lot, a lot, a lot of intervention and patience. And then a lot, a lot, a lot more intervention and patience.
Not only is Max reaching the "typical" age of the supposed terrible twos, but he doesn't have the communication skills to express himself. Can you imagine how frustrating that must be for him? You know you want something but you cannot express it? So instead you throw temper tantrums, turn blue and scare your mommy like crazy!?!? I am doing my best to work through it all with him, but it is emotionally draining to want so desperately to help your child...and you simply are not able to make that connection. You know?
I think it might be time to have the behavior specialist come out for another evaluation. Hmmm...I have been hoping this was a phase, but I have a feeling it might be more.
5 comments:
I too hope it's a phase. My 28 weeker also didn't get "terrible" until his threes, but he also didn't have the other challenges that Max faces. The bright side is: this is a "typical" milestone! You all might have to live it a bit longer than you'd like, but this too shall pass.
or u could ask our wonderful listxxxxxxxxxxxx
Max I hope you feel better soon little man!!
Hugs,
Crystla and Eva
hey there... when exactly do the easier times come along.. sending you support and love Cx
Aw... I hadn't read your latest post yet when I called you. Poor lil fella and poor mom! You're so in tune to his needs though which is wonderful. Feel better Max and hope you find time to rest Amy. A margarita DOES have the potential to help with that you know. ;)
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