Hello all...
Today I took Edwin to the pediatrician's to get her opinion on his development. As I mentioned previously, at his 1 year check-up she quickly diagnosed him with CP so that I could get more services, come to find out she didn't need to make a diagnosis to do that. Either way, she didn't assess him much then, so I figured I'd make an appointment for just E.J. and have her give me some feedback, especially since PT only wants to come monthly and I think it should be weekly at least. I just wanted a pediatrician who has seen numerous children throughout her years in practice, and see what she really thought.
She, like everyone else, said he looked great. She said she didn't see anything concerning. I wonder if she even remembers she diagnosed him with CP a couple weeks ago...she didn't mention it.
No, he is still not sitting for more than a few seconds unassisted, yes he is still army crawling in a disorganized way, he is standing better, but will still lift his leg up in a stepping reflex type of way, or will collapse his legs under his own weight at times, and yes he still seems to have a weak/floppy trunk...I told her all of this but she is not concerned. She actually said "he will walk, he will crawl, he will do all those things." She said his gross motor devel appears to be at a 6-7 month level, and this is not concerning considering he was extremely premature and is a boy. Meanwhile my Beanie is standing on everything, and taking steps while holding onto the couch. Today I watched as she hung on to Seaseme Street plastic gym with one hand, and bent down and reached for a toy and got back up again. I know I shouldn't be comparing S&E, but it's hard not to. I see things coming so quickly to Serena, and we are still working on sitting with E.J.
It's not that I can't accept that he may have CP. I would have bet my life on the fact that he would, and I am amazed by what he can do already. I saw my son nearly die countless times and watched as his O2 sats dipped into the teens and single digits on way too many occasions. Respiratory STAT was a commonly heard command during our NICu stay. He was ventilated and sedated for his first two months of life, and was given 2 full courses of steroids, (this is not typical at our NICU and we had to have family meetings about consenting to this) and came home on Pregnisolone. He had 2 weeks of ALTEs from apparent reflux while NG fed at 3 months old, and required chest compressions. He had an IVH, although it was mild gradeI/II, no one knows for sure what affect these bleeds really have. So in short, I was never in denial that his brain was affected by everything he went through, and even had visions of my little guy in a wheelchair when we were told his chances for severe disabilities were at least 80%.
So I guess knowing all I know, and hearing those things makes me wonder why no one seems concerned that he still has weak tone in his trunk. Yes, he is most definitely getting stronger and combat crawls and rolls all over the living room floor. He is more determined than ever to get something out of his reach, and is getting on both knees and inch worming along, although he continues to keep his head down while doing so, and will not push up on his hands...he still used his forearms for support. While on his belly he is lifting one hand up and puts it in our hand when he wants to be picked up.
My concern is that I am not doing something I should be to strengthen his trunk. My worry is because he has good fine motor skills, is vocalizing, is very socially interactive, and is not hypertonic, physical therapists will think he is just developing slower and may not want to come on a weekly basis. He gets A LOT of floor/tummy time and loves to move about. I can see progress and I am impressed with what he is doing. I don't want to be the worrying mother who appears to WANT someone to tell her something is wrong, of course I am thankful everyone says he is doing great, it's just I see him every day and I am concerned about his trunk and I don't want to let time go by without getting the therapies he needs.
After everything S&E have been through I realize how incredibly lucky we are. They have no issues eating, yes E.J. does have reflux, and will sometimes throw up after he eats if he gets coughing, but this is not the norm and I think a lot of that has to do with his weak trunk and weak stomach muscles. They are already on many table foods, and I can't sit down and eat something without Serena pulling up on my leg and opening her mouth, and E.J. opens up wide when I offer him some too. They are also wonderful sleepers and rarely fuss, and if they do they immediately stop when they are picked up. They don't appear to be having any sensory issues at this time, although it is still early. So far their vision is good in spite of both having ROP laser surgery. Neither have any hearing loss, and with the tubes that were placed for fluid we have not had to deal with painful ear infections (there was that one time I saw blood coming out of Edwin's ear but he didn't have a fever or even cry and it was taken care of with antibiotics.) Socially, they are attached really well to the people who love and care for them, and want to interact and play. Respiratory wise we still have difficulties, and there is the issue with Serena's airway/aspirating and issues with vocalizing with the vocal cord paralysis, but she does not have a problem eating or drinking her bottle as long as it's thickened, and even when she does appear to choke, thank goodness it has never lead to pneumonia. In fact, thankfully we haven't had too much trouble with sickness even though respiratory wise they are still requiring oxygen support. So I know we are extremely blessed.
I just want to make sure I am doing what I should for Edwin's development, and I have learned from a lot of great parents that sometimes you have to strongly advocate for more services. So on my list are to begin weekly ST for Serena and Edwin, it wouldn't hurt for them both, and weekly PT for Edwin. I'm sure we will also be beginning OT within the next couple of months. I know our EI worker will be on board with that, and the pedi agreed that E.J. should be getting PT at least once per week, ideally even twice a week.
So chime in...was it you as a parent who advocated for more services while the medical/developmental specialists assured you everything was okay? Or was it the professionals who pushed for your child to have more therapy/services?
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9 comments:
*hugs* Honestly reading that sounds exactly like posts I was making around Dakota's actual birthday. She wasn't rolling over, holding her head up while on her tummy or sitting up at all. Yet everyone kept looking at her and saying she looked great. I didn't understand how they could say that when at her 12mos evaluation she was put on a 3-4mos level developmentally. To me, that's not great!
But these guys have done "great" in doctor's eyes simply to survive. I constantly have to remind myself that the fact that my daughter is here, alive, looking and smiling at me is wonderful in and of itself.
If there is more to Edwin's delays than just his prematurity, time will magnify those problems. At 13mos even a normal FT kiddo won't necessarily be walking, some won't even be crawling and that can all be normal. Really all you want them doing is sitting up and rolling. Take into account his prematurity and sickness and he's not that far delayed.
What I've found is that as Dakota's gotten older and the discrepancy between what she's actually doing versus what she should be doing grows, doctors are starting to take notice. When she was 13mos old, 9mos adjusted and just starting to sit up she was only really about 3mos delayed from a normal kid. Now she's 20mos/16mos and she's just started pulling up, something a normal FT kid does around 9mos.
Hopefully there is absolutely nothing wrong and Edwin is just going at his own pace. The trunk weakness is very common with preemies from laying in bed and being immobile so long. I do think it would be great for you to have more PT than just once a month but all you can do is voice your concerns and hope that the therapists respond by increasing their visits.
We have not yet seen a neurologist for an official diagnosis. We see one in 10 days. At this point we also get PT twice a week. We stopped ECI about 3mos ago and go strictly through our hospital rehab. It's been the best decision we could have possibly made. ECI was only going to come once a month.
I'd push for more therapy...as you said, it absolutely cannot hurt and the worst that will happen is that they'll excel and age out of the system. I think that EJ is doing great, and he might be just delayed a bit on sitting and all, but given the risk factor here, you absolutely want PT or OT or whoever to work on strengthening his trunk muscles. It's not like Hallie's OT freaked out about this or anything, but she noted that Hallie was the slightest bit delayed in terms of sitting (was sitting some time in the middle of her 6th month) and noted her small amount of hypotonia in her trunk and set to work. And this is on a kid who, by all accounts, is pretty on target if not advanced in the gross motor department (though she did decide this weekend that walking was overrated). Anyway, we really trust Amy's instincts on this since she's the expert. And I think this really has paid off.
Make a fuss with the EI coordinator to the extent that you can. The kids are at risk and these are services that they really could use and if the current therapists don't want to or cannot provide those services, find ones who will. I bet that you will find, as we have, that the good ones are really interested in working with kids like ours who really are at such risk and who could really use their help.
well, we certaintly have not had to come half as far as you have.....but, that being said....initially it was me who had to constantly ask for this or that....as time went by, I think the Drs. "listened to me " more....I think they see so many situations....so they over generalize....are you in an Early Intervention Program or getting private therapy? I would deffinately work hard to get as much intervention as you can...there is so much research out there as to the bennifits of early intervention....I hate the wait and see approach....I'd like to ask those who say that, what would they do if it was their son or daughter? Anyways, listen to your gut...sounds like they are amazing kids!
I'm still pushing for more help with Arianna regarding weight gain... her pediatrician has done nothing - which is why he won't be her pediatrician for long.
You're doing a great job and you sound like you're second guessing yourself - don't! You're the mom. Mother knows best, really :)
I don't have much to offer you or any thing different that what you posted, but my son has severe lung disease and will be on oxygen until he is at least 2 years old, and what we've been told is that as the lung problems get better the development begins to take off, and today at our EI evaluation our therapist said that they are less concerned about delays than they are something totally out of the normal like tone issues. My son assessed between the 5 to 7-month level today, and he is 10 months chronological and 6 months corrected. They don't even feel he even needs therapy. As I read your blog it seems like you are already doing a lot for your children, and we were also told today the one thing I didn't want to hear. It will take months to develop disabilities. My son cannot sit by himself at all, cannot crawl, and can only stand against furniture if I put him there and hold him. For what it's worth, you already are a great advocate for your children, and if it makes you more comfortable, keep pushing for more therapy. You want and deserve what's best for your children.
More therapy couldn't hurt but what about having them show you what you can do with him to help.
When Paige was little she had PT twice a week but we also had to do therapy with her for a few hours a day (on and off-not all at once). We had a set of exersizes we ran through during each day. It helped me to feel more involved with her progress.
The only time I wished I had not been the one doing the therapy was when we had to stretch the tendons in her legs. We were trying to avoid tendon release surgery, hoping that the stretches would be enough. They were enough but it was very painful to watch her scream every day, for hours at a time.
Luckily I didn't have to push. Early Intervention as well as his pediatrician (and the neonatologists from the NICU, upon discharge from the NICU) recommended PT/OT and ST. I am surprised you don't have OT yet! It has made a major impact on Michael's develpment!!!
Thank you ALL for your input. I am definitely going to be more assertive and stop waiting for the professionals to make recommendations and really push for what I believe the kids need.
I am going to post some video soon so you can see the progress E.J. is making, and see what I am talking about when I try him in a sitting position.
I don't know what I would do without my online support!
As I believe I understand your post, it is the pediatrician who said that Edwin will walk, will talk, etc. If he has a CP diagnosis, what does his neurologist say? In our experience, the neurologist was much, much more accurate at making predictions about motor skills than was the pedi. Please don't misunderstand, Edwin may well walk and talk! I sure hope he does! Gosh, my full-term child didn't crawl or sit til 10.5 months! But he did walk at 1 year. Yet, we later learned he did have low-normal upper body tone. On the other hand, one of our preemies crawled at 5-6 months corrected age and walked at 11 months corrected age, yet he had tightness in his ankles and left lower extremeties and we were told early on that he might not walk!
I am just concerned that if CP is even suspected, I hope he is being following by neurology. I just tuned in to your blog, so I may have missed all that. Anyhow, our neurologist could tell us by one year gestational age that one of our preemies would NOT walk, and he was right.
All the best to you and your adorable twins!
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