"As I mentioned last week, at our appointment at Children's on Friday we discussed starting electrical stimulation with Noah on his right hand/arm."
She unfortunately got tied up running around today and left this evening after dinner for a two day conference. Furthermore, I am utterly unqualified at this point to continue the above discussion! So, you'll have to wait a couple of days to learn more about doctors and therapists hooking Noah up to electrodes! It's really not that bad (no pain, just stimulus) - so I understand...
What I can talk about is the chaos that is about to ensue as it's just Noah and I for two days without Susan who has truly taken over as CEO of the mini-organization that is his schedule. I'm envisioning Noah and I will be sitting in our underwear on the couch by Friday evening with the house a total disaster...just kidding, Susan...relax and enjoy!
While we will both certainly miss Susan the next two days, I am interested to see how I do with a 2-day glimpse into this routine, albeit with a slightly lighter schedule than normal. Also, I hope Susan is able to enjoy herself a bit - although she's at a medical conference - as she certainly deserves a couple of full days surrounded by adult conversations!
I'm also excited to be able to spend some extra time with Noah who, when not whining about something that 3-year olds like to whine about, is a really cool little guy and I love being with him. He has developed a great personality over the last couple of years - he's a comedian, he loves to have fun, he is mischievous, he is inquisitive, he is talkative, yet he is also shy when presented with new relationships - though he will usually open up just as it's time to say good-bye! I love seeing him presented with new situations, wondering how he will react. He never ceases to amaze me. Aside from endless appointments and therapies and exercises and stretching and braces - which sometimes seems overwhelming - I often find that I totally lose myself in all of the things that he has become and not thinking about the things that he may struggle to do, now and beyond. These are my favorite times - those when he is Noah and I am "Daddy"...and that's it. I don't mean to downplay the challenges that he faces (and that we all do, as a family), but I also think it's of critical importance to just be "normal" sometimes, and enjoy each other.
This is a balance that Susan and I talk about quite a bit - how to balance the therapies he needs to improve his long-term quality of life with the carefree period of learning and exploration that childhood is supposed to be. If anyone has seen the instruction manual for doing this - please forward along! His schedule is quite crazy with some sort of formal therapy session seven times/week (4 of which occur during school). We need to continue to make sure we balance this with fun time and normal kid activities such as sports, gym class, riding bikes, etc. I think we do a really good job of this - something I'm proud of as a parent - but if there's one thing I'm sure of it's that we're not perfect.
Okay - that's enough of a rant for tonight....it's late and I've got a busy couple of days coming up! Here's a photo I snapped of him with chocolate pudding on his face this evening after dinner (there was more before he buried his head in his arms just before I snapped it!)....never mind the concerned look on his face - let the chaos begin!
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