May update
Well, our computer has died so we have been out of touch and once again I am thankful for this site since we have put so many of the photos on it and we may not be able to get back any of the ones on our computer. That is certainly an advantage film has over digital.
Nolan is well. A real handful and getting cuter every day. He will climb anything that sits still long enough and has progressed to walking while holding just one finger but still won’t try it on his own. I keep telling him he would be so much happier if he just went for it, though it would mean a whole new level of vigilance on our part. We are bracing ourselves for the immanent “purging” of our breakables Nolan is going to help us with; we have too much stuff but we love every piece of it so we still have all of it, so far…
Nolan is great at making animal sounds, this morning we were hooting like owls, barking like dogs and meowing like cats. He also sings with me when I sing to him (which is often) though he seems to know different words than I do, strange. He is a pro at the “Itsy Bitsy Spider” and also enjoys some Patty cakes. He talks up a storm, unfortunately I can’t understand most of what he is saying which is frustrating to both of us at times. Other times we just laugh and keep going.
We have started going to the park which has been great. He loves the slide but most of all is interested in the other children. He is a bit shy at first but once warmed up will hit them with his “check me out” scream which makes adults laugh but kind of stumps the kids (they always look to me for direction). When there aren’t many kids there we climb up the slides, swing, walk the low walls, play with the mulch (move it here, now move it there, now back again) and watch the very tame squirrels. It is nice just getting out of the house and finding a good place for him to use up some of his ample energy.
Nolan’s weight has not gone up since November (some gains some losses all equaling out to just under 18 pounds). I saw a Dr (not his regular Dr) on Tuesday who brought up his G-tube but I vetoed that idea quickly. We are back to trying an antihistamine that also acts as an appetite stimulant (in 50% of the children). I had briefly tried it before his surgery though I wasn’t convinced it worked. I took him off it while he was on all the post surgery drugs because he was out of his head from them and I was not about to add another drug onto the mix. I have heard two different ideas about the results of this antihistamine, his pt said it will work quickly and if we don’t see a difference in his appetite right away he is of the 50% it doesn’t work for, then on Tuesday the Dr led me to believe we just didn’t try giving it to him long enough, that it would take a while to kick in… so we are going to give it longer this time, I guess, unless we get another opinion from his regular Dr. I will fight returning to the g-tube tooth and nail because I believe it will just take away from his desire to eat orally, but if someone presents me with a convincing plan I will give it a try if it will help Nolan.
That’s the news for today. No more pictures until we get a computer of some sort back in service. Hope everyone is well.
Friday, May 16, 2008 at 12:17 am
Thanks for reminding me of Nolan’s love of singing. Sorry to hear about the computer. Thanks for your update.
Friday, May 16, 2008 at 11:21 am
“we just laugh and keep going” - great motto, there. Glad you all are enjoying May so thoroughly.
Friday, May 16, 2008 at 11:25 am
Thank you so much for the update! I can picture y’all playing and squealing in the park. How lovely to be doing that in the spring in NC! My vote is that you trust your instincts about the g-tube and stick to oral feeding. If you try giving him more and he doesn’t want it, his body isn`t going to use it for growth if you put it directly into his stomach–or maybe I’m just thinking about myself again…what do I know?