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lemen99
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New here
lemen99
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Hello ladies - I'm new here. I thought I would introduce myself. I'm Kathy and I'm a mommy to 2 little boys. Andrew was a 26-week preemie and Elliott (35-weeker) is 3 months old.
Andrew is 2 1/2 (he'll be 3 in December). He had a really difficult time in his 17 week NICU stay and had brain bleeding, which they told us will result in some sort of difficulties. Now that he's 2, we are seeing things - no formal diagnosis yet but we see a neurodevelopmental doctor and go back in october and will potentially be diagnosed with CP. Considering how early he was, and what he's been through, he's actually doing pretty amazing.
The currently is in PT, OT, ST (2/week) and is in school now 3 days a week. He qualifies for developmental preschool in our public school system, and starts when he turns 3 (so in January). He qualifies based on 2 major delays - gross motor and social communication.
He was diagnosed with a swallowing disorder as an infant. Then he didn't have any issues for a while - once he reached 1 1/2 (after I got pregnant with #2) it was evident that he had delays in eating, talking, gross motor, fine motor - across the board. He has orthotics for a pronated walk and muscle tone. His immune system is below normal and he has reflux still (that resulted in a ton of infection issues, but with adenoid removal he's way better now) His speech has vastly improved with speech therapy. He has always been slow to pick up on social cues and is starting to interact some with other kids, and starting to pick up on social cues (like at the dinner table.) His therapist says he has a lot of aspergers tendencies, but it may be that he has a lot of sensory intergration problems (oral, touching, auditory, etc.). He has an oral sensory issue which explained a lot of his eating issues.
Right now our life really revolves around Andrew's doctors (6 specialists) and therapy (4 times a week). Obviously it's worth it, but it's very tiring, and I wish we had more time to do fun things with him.
My husband especially worries so much. He worries a lot about what his future is going to be like, what his struggles will be, etc. He hasn't been around toddlers a lot, so he tends to assume everything is abnormal, even when a lot of it is normal. He's very supportive, very helpful, very caring, but it's all very draining! It seems like very few people I know in real life understand what we've been through and what we're still going through.
I know we are so very fortunate that he's alive and that he's happy and talking and running, but some days are hard. Luckily our 3 month old is doing very very well - he's really happy now - he had colic as a newborn and that was a very very hard couple of months!
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Re: New here
Hi--
I have never posted here but I lurk often. I always find your posts on the Preemie board helpful and hope you find helpful insights here.
My 33-weeker is doing well but technically meets the definition of CP. An MRI last month showed she had a very mild PVL on her corpus callosum and we did PT for several months last year to help her overcome some left-sided weakness/increased tone. We recently started speech therapy because she has an expressive language delay. At 13 months adjusted, she scored in the 18-month range for receptive language but behind (I don't recall how much) for expressive language. She does not vocalize too terribly much and only says "mama" and "dada" purposefully. It is too early to tell, but I know that a big gap between expressive and receptive language can indicate apraxia. For us, it could also be a motor planning issue given that she was on the late end for some gross motor milestones.
Anyway, Andrew is a cutie and he has come so far! I know what it's like to wait and see what other issues may arise as our kiddos get older.
Welcome to the board! Your sons are very cute!
I have 2 boys also. Almost 3.5 and 2 next month. My 2yr old has CP and he was born at 35wk, 5d. We just moved to a new state (husband is military) last week so I am in the process of getting doctor appts set up so I can get new referrals in. DS2 has ST, OT, and PT (all weekly) in an outpatient setting and PT (weekly), ST (every other week but more feeding therapy then speech therapy), and OT (every other week). I'm not sure what the state of TN will do in way of EI therapies. DS2 wears DAFOs but the PTs back in KS both thought that in the near future he'll need custom orthotics (so a new referral for us). DS2 was diagnosed with CP at just shy of 10mos old and he has had a MRI and some bloodwork (I refused the spinal tap). MRI showed PVL. DS2 also wears glasses.
I know what you mean when you say your life revolves around therapies. I feel like that a lot. Actually, I feel like DS2 is typical until we go someplace for kids (park, festivals, etc) and then I feel like I get slapped upside the head with how far behind he is. Such as life I guess though. I mean, I KNOW he is behind but it never gets to me until I see kids doing what he would be able to do if he was typical.
Feel free to PM me if you have questions or just need to vent. I've been on the journey for a little over a year now but I know there are still many things to experience!
Welcome! My DS has PVL, CP (hypotonic), epilepsy, asthma, esotropia and glasses for farsightedness. All that brain-related stuff.
Your boys are adorable.