anyone have a preemie born 26 wks or earlier that is still not crawling/walking? my son is 14m adj

Elizabeth - posted on 06/24/2009 ( 4 moms have responded )

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my son was born at 26 wks and is now 14months adj. he is not crawling and just started holding his head up while sitting up with support. if he's on his tummy he struggles to hold his head up and plays possum to fall asleep. we get no answers from his dr or pt other than he's mentally/physically 6months. he has all his bottom front teeth and a molar and his muscle tone is great even when he was first born. I know he's gonna be delayed and am prepared but we get no answers. I understand that all preemies are different but I just want to know what the other preemies have been up to and how delayed he really is. He's had 4 brain surgeries as well as other surgeries all over and still trached. Thanks to all who respond. :-)

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[deleted account]

My heart goes out to you and your family. I saw another post where you said he was a survivng twin...that broke my heart. You and your hubby/partner must be very strong people. As hard as our 3.5 months in hospital were, I can't imagine dealing with all that you have and then have to live with your son so far away.



The other preemie parents I've met along the way have all said that they were told not to use jumperoos (standing entertainers) and all for various reasons. For my son, they told us that he had strong leg muscles but weak abs, standing wouldn't help him and he needed floor time. I don't understand why you can't use the tummy time mat, I always thought that tummy time was encouraged.



My son never had any brain surgeries but he was on various breathing devices (vent, cpap, low flow) for 3 months. I was begining to think he would never breathe on his own. It sounds like your son is in a good facility and that they are spending a lot of time working with him. If there was something bad going on the docs would tell you, they have to. With as many brain surgeries as he's had it's probably going to take time to heal and until then, no one, not even the docs, will know what to expect. I'm betting he'll surprise all of you. He just needs time.



I can feel the frustration in your posts. If you want to vent or to talk please send me a message, I'll be more than glad to listen. I know I felt so lost and confused until I started to meet other preemie moms. Talking to someone who's been there helps a lot.



((HUGS))

Elizabeth - posted on 06/25/2009

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he's still living at an after care facility 1hr away from us that has a dr that visits twice a week and physical, speech and occupational therapy 5days a week. they do some creative therapies. I just feel like there's something really bad going on and the dr won't tell us. His father wants to know if he can ever live on his own of have problems with walking and talking and not be like other people. His neurologist says that he may have moderate cerebral palsy but will show signs when he's 1. He's almost 2 and no signs. In fact the pt says his muscles and reflexes are great and he's responding well to all his treatments. He's had a setback and won't use his pacifier and sticks his tongue out when something is near his mouth-even his thumb. I think that may be from the reglan he was on for reflux. I noticed him trying to roll his legs over and he's always lifting and kicking his legs which I'm guessing is a good sign for his mobility. We're just concerned with his brain surgeries and the outcome he'll have as he gets older. He's still trached but on low settings. I kinda think that has been limiting his movement too. Almost like he knows he's plugged into something and has limits. with him not being home I feel like he's not really ours b/c he's far away and we can't really do anything with him. the pt girl won't allow us to buy him a jumperoo to stimulate his feet and strengthen his legs...a walker I can understand so he won't run over any of the other kids but the standing entertainer? I bought him the baby enistein tumm time entertainer mat and they won't use it...it's really aggravating. has anyone's babies been a respirator or had as many brain surgeries? I'd like him to have the hyperbaric chamber therapy to heal the damage but with him being in this facility I don't think they'll do it or recommend it. research shows it will reverse most signs of damage by the 1st month of use when given daily. I just don't know sometimes...he was 1lb 10oz when he was born and on the vent since he was born. the one dr said he could be off the vent by 1 1/2-2yrs the latest. that was when he was 4wks old(30wks gestational).

[deleted account]

Hey Elizabeth, sounds like your little guy has been through a lot. He's probablly going to need extra time to catch up. My son was born at 25 weeks and is the same age as your son (17 mon. actual, 14 corrected). He just started crawling last month. At some point I was told that they stop correcting a preemies age at 2 because that's when most 'catch up' to their age group, I was told that my son may be 3 before he totally catches up because he was a mirco preemie (less than 2lbs at birth). A woman I met while in hospital was told that her daughter may be 6 before she catches up (she was a 24 weeker and has some issues). As mentioned by Allison, are there any Early Start programs in your area? My son isn't in one (he goes to a follow-up clinic every 3 months that's provided by the hospital where he was born) but I know people who do have their kids in one and they say they've helped a lot. If you can't get to an Early Start, ask your dr or pediatrician if there's any exercises that you can do with your son to help him out. I know we were shown some to help my son. Also, is your dr. or ped. familiar with preemies? I've found that drs. that have never really worked with preemies often don't know what answers to give to the parents. I'm lucky to have a dr that's worked with preemies before.

Clow - posted on 06/25/2009

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I have twin boys that were born at 32 weeks. They are 17 months now and they are only starting to hold themselves up sitting. They are just know starting to try and crawl (one better than the other). They are doing well, I just think with premies, that it takes time...it is hard to be patient though! They are both in a program called Early Steps, where they have physical and ocupational therapy once a week and that has really helped them get stronger.

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