I got the most incredible email from somebody on Facebook recently… one of those “isn’t it a small world” moments. This mom has a three-year old daughter with complex issues and she was researching PDD-NOS. She came across my YouTube videos (which is too cool! we show up in Google search results for PDD-NOS!) and watched Living with PDD-NOS: A Trip to the Park. She said it reminded her so much of her own daughter, just an older version. She followed the link to my blog here (hi, Nicole!) and realized I looked familiar. We have actually talked before a couple of years ago when I was running a fundraiser for Brigid who is diagnosed with MELAS, a degnerative mitochondrial disease. Come to find out, this mom who wrote to me also lives in the same city as me! I can’t wait to get to know her better and be a support to her.
Anyway, this brought back some old memories for me. I remember when Anna was 2-3 and being desperate for information, hungry to talk to parents with older children with similar issues, and not finding many parents out there. At that time, I was an extremely active member of iVillage’s Child Hypotonia message board. I thought it might be useful to look some of my old posts and share them on Wednesdays as a new feature… Way Back Wednesday! I’m also going to add a bit of commentary and maybe some old pictures too. It could help moms with younger kids know they aren’t alone and also show where Anna was then compared to now.
I found this post from December of 2002. Anna was 21 months old. At that time, she had some global developmental delays (including speech, some physical stuff, and social skills) and hypotonia. We did not yet know about the PDD-NOS and she didn’t start having seizures until she was 3.5.
Hi everybody… I’ve been gone for awhile, here’s an update on Anna…
My last final exam is tonight… YEA! What a tough semester this has been. I’ve been lurking on the board, but have been too busy studying to post anything lately. It sounds like everyone is doing pretty good and getting ready for the holidays. I should get an A in both Pharmacology and Microbiology. Woo-hoo! Now I can relax and concentrate on Christmas. (BTW, my older daugher, Jenny, turned 11 last week. Wow, how the heck did that happen???)
We made a family decision a few weeks ago that I will be taking a long break from school to focus on Anna. We all agreed that putting her in daycare will not help her flourish and besides it would break all of our hearts. I’m not sure how long I’ll break from school, maybe until she starts kindergarten in the fall of 2006. If she starts catching up and things look good for her to go to preschool, the plan may change. In the meantime, I’m going to focus on “home-schooling” her, being her full-time OT, ST, and teacher. I’m going to enroll her in a Gymboree class for gross motor development and socialization. I’m going to take her out more, expose her to more kids (and probably more colds-LOL), and try, try, try to help her catch up a little.
In the last couple of months, Anna has started babbling lots more, and it almost sounds like jargon talk. She has finally started making the “ma-ma” sound, though it comes out like “maaaaa” — hey I’m counting it as mama! She’s picked up a couple of more signs, like milk and dog, so her total signs are up to 15 or so. Her foot isn’t turning in quite as bad as it was before, though when she’s tired, in it goes and down she falls (this morning, she fell twice). She’s still not eating much in the way of solid food, but she’s taking a bottle with Pediasure, formula, or milk with no problem. The whole sleep issue is still atrocious. She’s up anywhere from 1-3 times a night, but she doesn’t always want a bottle each time. This last week, she has started crying out in pain (or what sounds like it) and is nearly inconsolable for several minutes. It’s very sad and I’m not sure what’s going on or how to help her. She only does it once and it’s usually early, 1-2 hours after she’s gone to sleep. Ugh. Her daytime schedule is still really erratic too. Sometimes she takes 2 naps a day, sometimes just 1. It depends on how early she gets up for the day (anywhere from 5:45-7:30). I’m so much looking forward to not having to study when she’s sleeping… I see a lot more naps in my future. 🙂
We’re still waiting on the results from her genetic tests. The FISH for Angelman’s came back negative, which we figured since she doesn’t have seizures or hypopigmentation. Once we get the results from the other tests, we may go ahead with the DNA methylation study for Angelman’s… a lot of her symptoms fit the gene mutation version of the syndrome. I’ll let you know. Well, this turned into a novel. Sorry! I’ll be a better friend in this community again now that I’m done with school. I love you guys and thanks for all your support!!!
Holly and Anna, 21 months, hypotonia, global delays, no dx.
So interesting to go back and read that! We did proceed with the DNA methylation study for Angelman Syndrome and it was negative. I was taking my pre-requisites to apply to nursing school, I got accepted, then deferred and declined in order to focus on Anna. I had forgotten that she still took a bottle (in fact, Anna stayed on the bottle until well past her second birthday) and that Pediasure was her main source of caloric intake. She was only 21 pounds at 21 months. Oy, those sleepless nights! Anna slept like a newborn, up several times a night, until she was three or so? Here are a few pictures of her from that age:
She has always loved to dance! Here we were at a performance of Jenny’s… Jen used to take a sign language class (so that she could help teach Anna sign language and communicate with her as well as others) and the class would perform several times each semester.
Thanks for accompanying me on my journey to the past! I’m looking forward to another post like this next Wednesday.