Rescheduling

Rough night, has had better days...decided to reschedule sleep study. Hopefully sooner rather than later. Stay tuned...

It's a Big Ocean

Lots going on lately...where to begin? Luckily my RPCS education taught me to outline before I embark on any piece of writing, so I will just consult my notes...

John, James, Harrison and I went a couple of weeks ago to Storyland...a very cute amusement park for small children in the beautiful White Mountains of New Hampshire...Harry slept through the whole thing, both days. Enough said? It was pretty hot. He did enjoy the car ride (air conditioned car ride, I should say) and he absolutely LOVED being with his big brother the whole weekend! Soul mates.

As I mentioned, we have scheduled Harrison's second sleep study, and it is coming up this Sunday, July 31. I have already downloaded 2 movies for my long night ahead, plus I have a book about his particular type of vision issues, Cortical Visual Impairment (neurological, as a result of the seizures, not anatomical), that I have been meaning to read for quite a while now. I don't know if I am as confident about this one as I was for the first one, because we don't know why he was obstructing his airway. Is it neurological? Is it because of "low tone" in his oral motor skills, and his tongue is drifting back and blocking his airway that way? As another infamous Harry says, DUNNO. If this one does not go well, we really have to think about what we (and I mean you brilliant doctors of Children's Hospital Boston, ahem) can do to help him improve. 

He definitely has not been himself the last few days, and I hope he is not coming down with something, but if he is at all not in tip top shape for this I will reschedule.

On to better news..he still LOVES school and fights to stay awake for the entire 3 hours (except today...not a good day, like I said, not himself). He is looking at me, Mom, yes, me, more, and always touching my face and shoving his hand in my mouth as his way of connecting with me, which I love, especially when he has whip cream on his hands  :)

And twice he has responded to me when I said "where's mommy?"...looking at me and tapping my shoulder. That is huge! He has been smiling at me and John more, and he even greeted me with a wave and a smile when he awoke the other morning, and I swear he said "hi" then and again from across the room a little while later...maybe it's my imagination but I will give him the credit anyway. I see him look at Dad and wave to him, but it's nice that he finally gives mom a little respect- I thought this wouldn't be a problem until he was a teenager!

We visited with some friends last weekend in Kennebunkport, which was so beautiful and peaceful...I would never leave their porch if I didn't have to, what an amazing view of a little harbor in the back yard. Anyway, our friend's miniature poodle claimed Harrison immediately, jumping into the car as soon as I got out, and into the back to say hello. He barely left Harry's side, laying across him while I was trying to change him on the floor, and sitting up next to him while he napped on the bed, and even snarling at us if we tried to pick him up...I told him though, I said "NO" and he jumped up and left when I told him to, he knew I meant business.

Another friend brought her 12 year old son and his friend, and they couldn't leave Harry alone either, playing with him, talking to him, helping to feed him through his gtube, even constantly checking on him while he napped. They were so interested and attached right away...it was really beautiful to watch.

All in all a great day.

That kid sure makes a lot of friends for not saying a word. Hmmm, maybe that is the key.

Oh Brother...

I may have mentioned, I have always truly believed that Harrison's natural twin is his yellow lab, Cannon. They are both blond, full of love, laid back, take it as it comes, stoic kind of guys, and they are both more expressive than anyone I know who actually uses words. They also, bless them, both have had crazy medical issues since they were babies.

Cannon had his right knee replaced before he was a year old (his sister too but she was older), and he has been hospitalized more than once for dehydration from out of control vomiting. He has had some of the same tests as Harry, and they even tried to put him on one of the same meds, which we flat out refused because of the reaction Harrison had to it.

Cannon's knee has never healed correctly, and we have had to take him off of the anti-inflammatory meds because of his belly (Irritable Bowel???). Today we finally followed up with the surgeon who replaced his knee three years ago, and he feels that Cannon is doing even worse than the dogs who don't do well after this surgery. He falls, as he says "outside the box." What a surprise. Just as complicated as his baby brother. 

Hopefully this will be an easy fix...take out the metal plate that he no longer needs, because there is probably a chronic low- grade infection there from the metal, and give him antibiotics. Also,  cortisone-type shot in both knees, once a month for 3 months.  A mild anti-inflammatory that hopefully won't upset his stomach...and then we move on to the left knee, which has much worse arthritis and will probably also need to be replaced, but with a different procedure considering how he has reacted to the first one.  Poor baby...

How did our boys get to be so complicated????? They are both damn lucky they are so cute and lovable!!!

Harrison, by the way...doing great, loving being back in school for the summer, and scheduled for a 2nd sleep study on July 31. I'll keep you posted....