I realize there is a lot I want to tell you guys and haven't yet because things have been so busy. Wednesday night the kids started with the stomach bug...throwing up everything...even bile yuk, and diarrhea. It's not completely gone, but getting better. They must have lost a pound at least! They weighed 22 pounds Tuesday before the belly bug.
I wanted to tell you all about EJ. As you know he has always been "behind" Serena developmentally. He also has significant low lone throughout, but primarily in his abdomen (trunk.) At NICU follow-up I expressed my many concerns about Edwin. Very low tone impacting his ability to sit unassisted for more than a few seconds, still belly crawling and not pushing up on hands and knees consistently, not having any meaningful words, except for the occasional "ma ma," and having no real receptive language. At first, before I really persisted, they said they didn't believe he had CP. As you know this is what everyone has said for so long. And I take it to mean it's not severe CP. I think his low tone is harder to dx than if he were hypertonic. They can still attribute it to transient dystonia, a common "preemie" issue, but in my heart I believe Edwin has cerebral palsy, and from reading here you'll remember that in spite of what every doctor/therapist has said, I have never ruled it out. EJ is an extremely lovable and happy guy, and it is really hard sometimes to see him struggle to do things. It's tough that I can't just sit him down...in the tub or anywhere else. When we go out to eat and he's in he highchair, without the support of ours at home he often slouches to the side. He could do SO much more if it wasn't for his low tone in his trunk. He pulls to stand and cruises, hangs on with one hand and balances, but he is no where close to standing unassisted, which means walking is a long way off, and I am starting to wonder if he will begin walking with the aid of a walker or something else. In terms of his developmental age in NICU follow-up he is at a 10 month old level.
Serena is doing amazing, which makes it that much harder sometimes to see her taking off and in a sense leaving her brother behind. Serena has wonderful receptive language. If you say feed the baby, she will give her toy or stuffed animal the bottle, up to its mouth and tip the bottle upside down appropriately. Yesterday I said "give Edwin the bottle" "feed Edwin the bottle" and she did. Serena is taking more and more steps and is getting a lot more confident in walking. It's still not official walking since she doesn't always take a whole bunch of steps, but she's safe to leave in a standing position and will walk with coaxing. Serena says, "bye bye" and waves, or when she knows someone is leaving (getting on their shoes, getting the keys, putting on coats.) Yesterday she took her Daddy's keys, went over the to door and said "bye bye." It was cute. Our nurse Jeanie has always put her hands up in the air and said "sooo big," if you say "sooo big" to Serena she will put her hands up in the air and smile. Priceless. She claps on demand by just saying "clap your hands." She is super smart and curious. She loves to take objects out of places and then put them back. She takes off her pants, tries to put on her socks and shoes, and washes EJ's hair in the tub. She says "ba ba" when she wants a bottle and "ma ma" when she wants me. She is determined and will not give up easily...typical toddler behavior.
So I have twins at totally different levels of development. We are beginning sign language for Edwin (and we'll do it with Bean too), because it will be easier for him to express him needs via signing since his delays are global, and it will be sometime before he speaks. He has begun clapping his hands in imitation, although it is tough for him to make smooth motions, and he'll often "miss" when bringing his hands together midline. I do see improvement in his trunk, as when he gets up to play with something above eye level and rests his bum on his knees, he has been able to let go of the object and balance for a second or two. He is also getting better at standing without as much support (he will still rest his chest on the couch or whatever he is cruising on from time to time.) The tough part for me is I will say Serena say "bye bye" and I know she'll do it and I ask Edwin to and try to teach him and it's tough that he doesn't understand. It's a balance between encouraging Serena's emerging development and curiosity and teaching Edwin, but still doing things that are on his level of understanding. I have a lot of faith that he will do things...just on his own time.
It makes it easier to accept since we knew the likelihood that as 23 weekers there would be a lot of hurdles. Because I knew they wouldn't walk away unscathed, it has helped me notice the issues and accept them. The NICU follow up report was extremely kind to me, and it made me feel good. They said it was refreshing to work with a family who was knowledgeable about prematurity and the effects. I think it takes a load off them when a parent like me says, "I know Edwin has global delays, I feel he has cerebral palsy...however mild. I'm not hung up on the label unless it can get him services he needs. I'm ok with you telling me you believe he has CP, would you give me your honest opinion." It was only after I worded things like this did I finally get someone to say "we can't rule out cerebral palsy....we'd like to see him again in 6 months." Even if it's not CP, his low tone and delays strongly effect his ability to do typical things, and therefore we need more therapy. So like I said we're going to try signing, and hopefully get PT to pass along info to EI and OT. We need less singing and circle time and more gross motor therapy. I've tried to get this point across, but maybe after the NICU follow-up report I'll have more luck. What is most important to me is that both Serena and Edwin have the opportunity to live up to THEIR potential! I am so proud of how hard they try. They are simply amazing!
There is more to write about like the March for Babies, but I'll do that tomorrow. For now enjoy pictures from our day at the park!
3 comments:
I applaud you for being such a strong, intelligent and sensible advocate for your kids, especially your son. You are an example for us all!
What great family photos! Edwin Jr is an amazing little guy, he will do big things in this world!
You know there is a lot of what you are seeing with Edwin that I saw with Kellar. Kellar still is hit or miss with waving bye-bye, he knows how to do it but it's like he just sits there. His clapping came way late, he would miss his hands when clapping or they would get to going really *stiff* like and it was heartbreaking to watch, it has gotten somewhat better but no where near perfect. Kellar had low tone in his trunk area, in fact they say it may have been a issue with his balance as well, but I have seen a huge improvement in that area. Kellar did not crawl correctly for a while, he preferred to army crawl which ended up being him mainly using one leg and one arm to do this, one day he just took off and did it correctly. He took a few steps and then we didn't see anymore for weeks, maybe even closer to a month. Serean sounds like she is doing amazing, Edwin will get there, just as Kellar one day will get there, right now they are all exactly where God wants them to be. I would be lying if I said that I don't worry about Kellar *understanding* things, if I told him to wash my hair he'd probably not even know what I was wanting. I was just asking others on the boards about this a few wks ago, Kellar compared to other 2 years old is obviously behind in things following directions, these 2 year olds he's around are like little grown ups, they're tattling, going and getting things they are asked to and it was a tough pill for me to swallow at first. I know it's so easier said than done, but give Edwin time, ( again I know soooo easier said than done, I freak out over everything ) and hopefully with him being able to watch Serena he'll learn by example, Kellar is doing more since being around the other kids..You are doing a great job Steph!!!
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