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Preemies
bummed (2 yr nicu follow-up)
At Andrew's last eval he was measuring above his adjusted age in all
areas. There were no concerns at his appointment a year ago. Since
then I've quit my job, enrolled him in therapy 2/week, a mom's group,
and done everything we know to do to help him do well. And he's
improved leaps & bounds in the last couple of months. Then how is
he so much worse off?!!?! BAH.
I'll try give the quick summary.
They
had not scheduled an eval for him because at his last 2 appointments (1
year adjusted, 3 months adjusted) he was doing so well. (His last
eval was at 3 months adjusted.) The doctor saw him first. He said that
he looked really good. But that he could tell he looked and acted
"behind", and thought we should an eval. I expected (and wanted) that,
as I know he's behind and we're working on it, and I wanted to see if
his recs were in line with the First Steps recs.
So we do the
eval - Andrew does well and I thought it was an accurate reflection of
the things he can and cannot do at home - - and "he's a lot further
behind than I thought, I'm glad we did the eval". He measured way
behind for his actual age, even still behind when adjusted for typical
preemies. He measured 16 mo gross motor, 19 mo cognitive, and 22 mo
fine motor (they did all the things we've been working really hard on in
OT, so I'm sure that helped his score, so that's optimistic, at least.)
He
says we need to add 1 more speech per week. He says we need to add PT
twice a week. (So that brings us up to 5 therapy sessions/week.) The therapist says he needs leg braces, and eventually
back down to inserts. He has (some fancy word that means his
muscles are tight) in his calves, walks with his legs inward, and has no
strength/tone at all in his thighs, glutes (sp?), core, etc. She said
this is why he walked late, this is why he's scared to walk on uneven
ground, and this is why he's developing so slowly. He's doing ALL the
balancing and working with his calf muscles.
Oh, and he said he wished we would have gotten his hernia
closed when he had his surgery in December. He probably thinks like we
think, that the last thing he needs to overcome right now is another
surgery on top of everything else as it took him over a month to recover
fully last time (well at least weight-wise.) We didn't even think
about it and were in such a rush to get him fixed. (I don't even know
if it would have worked coordinating a 3rd doctor's schedule in that
surgery.)
He also said that he thinks, despite his immune system
being lower than normal, we should go ahead and do preschool to benefit
his speech. I am trying to find programs that start in June, but most don't meet over the summer. I hope we can fit
it in, as he would be in therapy now 5 times a week. I was considering
enrolling him in preschool in place of the 2nd speech therapy, but I
don't know what to do. His ST didn't think he'd benefit much with
another speech session per week because she said what matters is what
the parents do all week, and she said that she can tell that I do the
right things (what she does during ST) to help him all week long.
Our appt was 2.5 hours and Andrew was
pretty happy for most of it. Little trooper. Don't get me wrong, I
know he's doing well considering, and I'm thankful for that, and he's
such a cute little lovable dude, but it's still really hard. Even
though I knew he was struggling, it's hard to hear it this way, from our
doctor who is typically the most laid back.
His weight was perfect at least - he's never had issues there since he came home. We didn't even talk about his reflux (still medicated), which was his biggest issue previously. It's just really difficult that we are working harder than ever, and he is falling behind more than ever when he should be on his way to catching up.
Please pray that Andrew can get into PT soon, that he can qualify for PT twice a week (it's hard to get that approval but Dr E faxed in the rec to First Steps), that he progresses quickly, and that Ryan and I can handle all of this on top of a high risk pregnancy, and then a (praying for a healthy, term!) newborn.
This discussion has been closed.
Re: bummed (2 yr nicu follow-up)
Oh Lemen - I just want to offer you a big supportive hug. I have no advice but I think you're doing an amazing job. I hope that things start to improve and your love for Andrew is amazing.
Wishing you the best!
Aw- sorry your eval didn't go as well as you'd hoped. I dread evals with DD because I feel like they're going to blame every misstep on DH and I.
It sounds like you're doing everything you can (and more) for Andrew. You said it, the eval was everything you're working on at home. Your ST sees the effort you're putting in and he is where he is because you're doing all the right things for him. I know that with DD we only have set backs in one or two areas, so I can't imagine trying to deal with issues in so many areas (for either of you).
I hope you get into PT. I hope that you can find a good preschool program that can work with him and help him interact with other children as a source of inspiration (I know that when DD hangs out with other children she always seems to gain in leaps and bounds because she so badly wants to keep up). And I hope that you can see that you're going above and beyond for him- don't beat yourself up over it, because it really seems like there isn't a lot more you can do. GL mamma.
I just want to echo what the pp's said. And imagine where he would be if you weren't focusing all your energy on him.
If he can't get into preschool this summer can you enroll him part time in a daycare with a school like setting?
Oh Lemen, I'm sorry. You are an amazing mom and are doing so much to make sure that Andrew is healthy and happy. Sending you guys lots of t&ps.
This may be what we do...we can't find any preschools that meet over the summer
I am worried about the germs and that scares me, but I keep telling myself "it's summer it won't be as bad.". His immune system is below normal even for a preemie and it scares me, but so far, he's handled sickness well despite all the infections (he got tubes & adenoidectomy so that should help!)
Thanks ladies!
You and your babies are in my prayers. It is hard, but you are doing an amazing job. My days get so crazy busy that I don't have too much time to write on here and give updates, but I'm so grateful to you that you keep us updated. You are such an inspiration to this fellow 26 weeker mom. I have to believe that all of our efforts and persistence will pay off for our babies. Just know that this mama is cheering you on all the way from california!!