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?
