This is going to be quick b/c I am tired and want to get to sleep, but Edwin's eval today with PT went really really well. He was such a star. He pivoted around all over the place, army crawled across the floor to get toys out of his reach, and was social and sooo determined.
Our PT has a doctorate in physical therapy and has been doing this work for 15 years. She does a lot of work with children with CP.
The PT said that she sees NO signs of CP with Edwin. Of course she told us she can't rule it out 100%, but that he definitely does not have moderate to severe CP due many reasons she showed me, which was so helpful for her to point out. She said Edwin is not truly scissoring because only his ankles cross and it is not coming from his hips. He is playing with one foot by rubbing it against the other, the same with his toes. There are numerous other examples of things Edwin is doing or is not doing that show that he is not affected by clear signs of CP.
The treatment plan is to put toys just out of Edwin's reach 2-3 inches...when we do this he pulls with his arms and bends a knee up to the trunk part of his body and army crawls and reaches for the toy. This builds up his muscles which are weak because of his medical problems including his lung disease and history of pulmonary hypertension. PT said from what she can see his weakness in his trunk is exactly that, weakness, not a tone issue from CP. She fully expects him to meet his gross motor milestones with time, especially as his lungs improve. She said the best treatment is to keep him on his belly for tummy time and encourage him to move by using his muscles. In fact, she sees nothing in particular that she can do and instead of coming weekly as planned when she got the referral of a former 23 weeker with CP, she is coming monthly. She said if I have ANY concerns she can come right in. EI will still come weekly to work on things and observe his progress, (and Serena's.)
PT said we can't compare Edwin and Serena. She said Serena is very advanced for her adjusted age, even independent of her extreme prematurity, which when you factor that in makes her progress even more advanced. (I guess she hasn't seen our online friend Hallie, a fellow 23 weeker who did what Serena does even a month or so before Serena did it.) Serena is crawling, pulling to stand on EVERYTHING and just acting like a toddler. It's amazing to see how inquistive she is. Edwin is learning a lot from her and competes with her for toys which will only help Edwin's own development.
So it was a great day. Like I said before, I will love and be thankful for Edwin no matter what. If she had seen concerning movement and tone today and thought the CP diagnosis was accurate I would have continued my day the way it started. But it did feel good to have someone who clearly is experienced assess Edwin and feel so confident that he is coming along great.
Thanks everyone for all your support!!!
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Hallie's a funny creature where her gross motor skills are concerned (she thought about but rejected the idea of walking yet again yesterday). But eating skills...Serena has this one sewn up! And it's funny, we're now panicked about fine motor skills, 'cause we heard that the next NICU assessment involves Hallie putting pennies in a piggy bank. Pennies! We can't give her pennies! I imagine having to explain to the EMT that comes over when the baby chokes on a penny that we were cramming for a NICU follow-up visit and that the kid (predictably) decided that it was more fun to swallow the penny than to deposit it in a piggy bank.
Anyway, seriously, we think your kids are doing GREAT. Both of them. And they are as cute as can be. The PT assessment yesterday was great, but you are right, it would change nothing either way.
I'm so glad the PT pointed out all the great things he does... almost anyone who sees the progress your children have made as nothing short of amazing, really. I don't think any of us have doubted that either of them have CP...
Sometimes I wish Ari had PT and OT services more regularly (they only come once every 2 months and don't really do anything).
Pennies in a piggy bank? Gosh... I got her a fisher price piggy bank and its not easy for her to get the gigantic coins in the slot let alone a penny! I don't know what she should be able to do at this point and I sort of wish I had someone, like an OT or PT, to tell me what she should be able to do so we can work on it.
She was 2 lbs. 15 oz. at birth - 90 grams too big for NICU follow-up. Can you believe that?!
It still makes me mad that we can't get some of the services that would help us help her... as first time parents we just don't know. I took Arianna to the library on Tuesday and a few kids younger than her were playing with a big train set in the middle of the room. So I set Arianna down and tried showing her how to play with the other kids and how to use the train. One little boy who couldn't really walk yet - he was probably about 12 months - could take the train and run it over the tracks! Talk about great fine motor skills... yet Arianna could only push it off the tracks and then got frustrated and threw it... She should be able to do that right? How do we work on that stuff?
I need a book that tells me... I need a person to tell me: "She should do 'x' by this time"... yet when I ask her EI people they just tell me 'but she's doing so good, if she tested now she wouldn't qualify for services anymore!'
Being a parent of a preemie leaves so many questions. They have rough starts, and so do the parents, a shoulder to lean on would be nice...
Serena can put a ball in a toy with holes in it where it's suppose to go, but a penny in a piggy bank??? She would think it was a Gerber puff and DEFINITELY eat and swallow it...yikes!
Yeah, I think the penny thing is a bit much, too. Honestly. Hallie can get her index finger into tiny holes in toys (she has these foam puzzle pieces that have pegs but I took away the pegs because they are choking hazards; I would consider giving them back to her now but probably have lost them). Anyway, she sticks her fingers into them and then twirls the pieces around on her fingers. Very cute. But definitely less challenging than a penny in a piggy bank. And now that she is finally not choking on and throwing up Gerber puffs (if you administer them one at a time), she would be shoving that penny into her mouth, too.
What confounded me about the NICU follow up session our friend described was that the PT didn't actually expect the 12 month old she was evaluating to do everything, but she didn't tell the mom and dad what she was expecting she could do, and what she did not really think was possible. Where does that leave us parents?
As far as our OT services go, our OT tries to push Hallie so that she can get up to the actual age range's skill level. We like that about her. And since she likes our girl and hanging out with us, she's going to push to have Hallie's services continued for as long as possible. I do think that Hallie would pick stuff up anyway, but just more slowly, and we feel reassured by having Hallie's OT around to make sure that she is not falling off some inscrutable chart somewhere. So we'll keep her in therapy until she ages out even if things go really well.
One of the biggest things that helps Hallie, I think, is something to which Jennifer alluded: being around other kids and seeing what they are doing. She watches Karina, in particular, like a hawk and picks some stuff up from her every week. And Karina is a very poised, very coordinated, advanced little girl who has a strong independent streak (she's feeding herself, started swimming, etc and she's still around 18 months old). This has helped us enormously. So, even during RSV lockdown, we're going to continue to see Karina. If you guys know any kids who are healthy, don't go to daycare, and are advanced, make playdates with them. I think the isolation from 'regular' kids may have something to do with preemies being developmentally behind.
"I think the isolation from 'regular' kids may have something to do with preemies being developmentally behind."
Agree completely! Whats nice about EI for us is that they can right that she needs interaction with other kids - so she gets free Kindermusik and Gymboree classes out of it... but once winter comes? I dunno - we really don't want more months of sickness.
She may not get RSV shots this year... and even with them we still ended up in the PICU twice last winter! UGH!
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