Monday, December 29, 2008

Minor Christmas Miracle(s)

So, on Thanksgiving weekend, we did our first trip down to Southern California to see the family since the accident. Needlenoggin did really well, all things considered, and we arrived in SoCal so he could have dinner in the hotel with my folks:

There was ONE hotel in my folks' city with ONE roll-in shower, and my parents rented it for Needlenoggin, which meant that for the first time since July, he got to take a shower by himself (they hosed the patients off at SCVMC and he's been sponge bathing, but still). He told us he hadn't realized how dirty he'd been until he was finally clean. Oh, and the bench they'd installed (so you don't have to shower in your wheelchair) wasn't ACTUALLY attached to the wall, so he did have to shower in his wheelchair.

So, first shower.

Then we had a first birthday for Little Monkey/Glad you're alive party for Needlenoggin, and had awesome cake. Ninja themed? Yes it is.

Lots of friends who we haven't seen in ages (and who live far, far away) came to celebrate with us. More pictures are here and here.The best visitor for Needlenoggin though was his favorite high-school teacher. The guy came from a family celebration and sat and talked with Needlenoggin. Now, my brother has always been rather taciturn, and doesn't talk at great length, but since the accident we've had entire days that consist of two or three three-word sentences. So, to see him and Mr. P yukking it up was heart-warming, especially when he took an hour talking to us about the guy afterwards. If you're reading this, thank you so much for investing in my brother. You are a shining example of what teachers are supposed to be.

So. Fantastic teacher visit.

Anywho, the party went well. We also got some great progress in getting Needlenoggin into a car sans wheelchair. No, he can't do it by himself and yes, it involves multiple people and a lift, but hey, check him out:

So, riding in a real car. Cool.

Then we got home and had Little Monkey's check up at his surgeons' office. They poked him, squeezed him, measured him, and pronounced him healthy. "He may still need a corrective surgery or two to fix the outside of his skull, where it is all bumpy and dented, but that won't require any more cracking it open," we were told. "So, good. See you in six months."

Awesome. Minor neurosurgery, maybe, in a long time. Cool.

Oh, and we're figuring out our lift. We managed to get Needlenoggin into one of our recliners to watch a movie, which he said is way more comfortable than his wheelchairs. It's a half an hour process getting him in and out, but he REALLY seemed to enjoy it, so rock on.

Then, mid December, we took family Christmas pictures:

And made Christmas cards:

Later that week we went to the doctor's office for Needlenoggin to find that his doc had actually received the records and was a much, much nicer guy. Talked to me about Little Monkey, admitted that spinal cord injuries aren't his thing, but was willing to talk to us and get it all sorted out. Wrote correct Rxs.

Totally cool.

Then my folks arrived for Christmas. Minor miracle in and of itself, really.

They hung out with Needlenoggin on Christmas Eve and came back to our place for Christmas dinner. On Christmas morning, Needlenoggin was situated (in his awesome new Batman jammies) in the reciner nearest the tree. I went to go let the kids in (they were playing in our room), and came out to find that he'd (intentionally) slid down the the floor so he could open stockings with Rorysaurus. "I want to celebrate Christmas morning like a person," he said. "Take that thing," pointing to the wheelchair, "away."

It is a huge workout on his center, since he doesn't have complete control over that area, but how cool is that? (Getting him back up is less fun, but whatever). He's even found he can snuggle Dingo better from on the ground.

So, sitting. Score.

He's also trying to use his manual wheelchair more and more as his once-broken wrist gets stronger. We're still waiting on his permanent wheelchair to come (he's in an ill-fitting loaner), which we hope will get him out and about more. Still no social services (they said maybe in April), but we've been blessed to have a wonderful dog trainer volunteer her time to work with Dingo and a volunteer dog-walker come several times a week as well.

Yay is. C'mon 2009!

Wednesday, December 3, 2008

Neck-brace and PT for Needlenoggin

Well, after two scans (a Cat Scan on 11/24 and an Xray on 11/26), Needlenoggin was finally cleared to live his life without a neck-brace! Yeehaw! This is great news because now he can look around from side to side and up and down, something he hasn't really been able to do since the fall. (We took it off for photos since he hated the look of it so much, but he had to wear it all the time to make sure he didn't snap his top two vertebra). Ick.

If you remember, the brace looked like this:

Now, he looks like this:

Also on the 26th, we went to his physical therapist (all the way out in SF) and she tried to get him into a standing frame. it didn't quite work (since the harness they had is awful and Needlenoggin isn't quite flexible enough in his legs to stand). She bucked him in here:

and was able to get him up this high:

He can't weight-bear (hence the uncomfy look on his face) but being upright is so good for his spine and internal organs. e was sore for a good long while afterwards, though.

Oh, and we managed to get him into some hot water...literally. His therapists have all recommended that he get into a warm therapy pool to ease his spasms and take some weight off of his fragile skin. We were finally able to find such a pool and a lift to get him in and out, and while not floating away was a lot of work, he loved it. It was the first time he'd been submerged in water since the accident (no baths or pool therapy until this point).

Broken Hearts

Alright, the title may be a little melodramatic, but I was very shocked at Rorysaurus and Little Monkey's checkup the other week.

In case you didn't know, or remember, Little Monkey has a heart defect (he did have two, but one went away all on its own). Instead of looking like this:

Little Monkey's Aortic Valve looks like this:

It's a minor defect as far as heart defects go, and while it probably will require surgery, it shouldn't be an issue until he's in his forties.

Well, when we went to the kids' appointment, my WONDERFUL pediatrician checked Rorysaurus' ears and heart, then checked Little Monkey's head, then listened to Rorysaurus' heart, then checked her reflexes, then had Rorysaurus lay down so she could hear her heart... You see where this is going, right? So, I asked what was up, and (after getting the opinion of the other doc in the office) she told me Rorysaurus has a benign systolic heart murmur, known as a Still's Murmur. Not a real problem, just something we need to be aware of for dental surgery because of an elevated risk of infective endocarditis (where bacteria enters the bloodstream through dental procedure and infects and kills a heart valve. It actually happened to Dh's cousin's wife (hereby dubbed Music Mama).

By the way, if you have any extra prayers to spare, please keep Music Mama in your prayers. She had a valve replaced a few years ago due to the endocarditis, but it is failing now, and she's in her sixth month of pregnancy. Her docs figure it will be between 3 days post-partum and a few years before the valve needs replacing, but if y'all want to pray the need is delayed as long as possible, that would be great.