It has now been almost 4 weeks since Kaiden had his last seizure. And holy cow, has his development run with the wind! In this short amount of time, Kaiden has gained 4 - 6 months of development and now functions at about a 12 month level. If you take his prematurity into account, he's now only 3.5 months behind, if not, he's about 5 months behind.
Below is his accomplishments list, to date being seizure free. Prior to this, he had been functioning at about the same level as when the seizures started, right around the 6 - 7 month age range. He never regressed, but he didn't make much progress either. At 11 months, he said his first word (Mama) 3 times, and even now still has yet to repeat it. His other accomplishment, around 11 - 12 months was beginning stay in an upright sitting position unassisted, as well as banging his little hands on toys within his reach. The toy play began to progress after we started the calcium supplement around 12 months.
5/29/10 seizure free
5/31/10 noted that Kaiden is now smiling & giggling again without direct interaction, haven't seen that in months
Kaiden is standing and able to hold onto something all by himself for support for a few seconds rather than immediately falling over
Responds to tickling instead of no response whatsoever to tickling
6/1/10 able to get picture of Kaiden standing holding onto edge of pack & play by himself
6/3/10 therapists say Kaiden is signing “eat”, tried to teach him signs last year to no avail, had just started up again 1 – 2 weeks ago
6/8/10 Kaiden trying to crawl, lifting his belly off the floor, arms shaking with effort . . . trying to bring knees under him
6/9/10 consistently bouncing to music, responding to sound (hearing test showed hearing in perfect order, just not realizing sounds have meaning, concern about auditory nerve function)
Laughing at toys
6/10/10 signed “more”
really enjoying his books and toys that make noise
rolling to and reaching out for toys
6/11/10 pulling toys toward himself to play with
6/12/10 very chattery while looking around, like he has his own language
Immediately looking for eye contact upon us entering a room and verbally greeting
6/13/10 Showing preference for toys by throwing the one he doesn’t want
6/15/10 has been very consistent in the last 2 weeks in waiting for me to take off his diaper to poop, thinking it wouldn’t hurt to start some toilet training
6/16/10 pulled himself into a full 4-point position
Playing with the water from the sprayer during bath
6/18/10 deliberately picked up loaded spoon, managed to get it in his mouth, and then banged the now-empty spoon around for awhile. Happened at lunch and again at dinner, repeated results 6/19/10 – 6/20/10, even going for (and drinking from) my glass.
6/23/10 rocking motion while in 4 point position
6/25/10 temper tantrums, exorcist-style with screaming/flailing. And since Kaiden is extra flexible with Down Syndrome, his little head really can just about revolve!
Kaiden has come so far that many people have commented exactly what we have been wondering - is it possible . . . is it even remotely possible that nightshade foods have something to do with the developmental delays with Down Syndrome? It could make sense, with them not being able to process foods as well. Not saying that this is a cure, by any means!! But, if it helps Kaiden . . . we could have stumbled onto something HUGE. Or we could be an isolated case.
With that, I've been trying to get the word out. If there is even the remotest chance that this will help somebody else, I have to try. This blog, my JM friends, Facebook, and now to try the real world. I did send a very detailed letter to Kaiden's neurologist stating my findings. It's been 3 weeks and no response. His pediatrician called the day she read the letter to say how thrilled she was!
I tried the closest local news station, emailed them Friday night . . . no response yet but we also had a slew of nasty weather. They may have lost power and who knows, either the email got eaten or maybe they are just not interested. I emailed another news station today, ironically it's the same news guy that tried to help us out when Lola got lost - he switched jobs and is now at this station. I hope to hear back from him, he was really nice. If not, though, I will keep trying until I find some way to get it out there.
Kaiden's physical therapist said we need to get on Oprah, better yet, Rachel Ray so I can show them the tasty recipes I've come up with that work with Kaiden's dietary needs. Of course, she just wants to go with! Hahahaha . . . we love her to death so that would be fine with me!