Looking for support

Carrie - posted on 11/06/2008 ( 11 moms have responded )

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I am a mother of a son born at 26 weeks gestation(14 weeks to early) weighing only 1 lb 9oz. 11 inches long. He is now 20 months old and weighs 19 lbs 3oz . He crawls and is able to pull to tall kneeling but walking seems so far away due to the increased muscle tone in the hips and hamstrings. It is a hard pill to swallow the possibility of him never walking due to the possibility he my have CP.

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Sharon - posted on 04/02/2013

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Get rid of any exert saucer items air others you hang him in bouncing does not develop leg coordination or control.

I am sorry for you particular journey. My child was born 2ilb 4oz and we were given this advice as we left the hospital so as she grew I had one item she bounced in and it was only located in the bathroom her time was limited in it She walked at her adjusted age 1 yrs old at 15 mths Now she's tall takes ballet and is perfect with allergies

Erin - posted on 11/18/2008

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My son, Daniel was born at 23 1/2 weeks and weighed 1lb 9 oz, 12 inches long. He is now 15 months old. He is crawling and starting to pull himself up into a kneeling position. I have PT come once a month to work on increased muscle tone. It's so nice to have a place like this to share milestones. We were in the NICU for 4 months and I learned tons.. but after the NICU you are kind of on your own. CP is always in the back of my mind, but I have to remind myself that it will take a little longer for him to catch up b/c he had to fight so fricking hard too early.

Sharon - posted on 11/12/2008

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Hi, I am a mom to a 29 weeker, he was 3lbs 7oz. Stephen spent 50 days in the NICU and had many complications. It was such a rough road but have faith, these little babies seem to be the strongest ones! Stephen is now 6yrs old and in first grade. He has mild CP and has had other delays. I'm not sure where you live and if you have the resources available to you but Stephen has been receiving services since he was born and has done amazing. Early Intervention is the key! Not only do the therapists work with your child but also with your family to help everyone better understand what the child is going through and how to help them. Stephen did not start to walk till around 18 months and didn't talk till about he was 2 1/2 yrs old. I had one neurologist ask what my goals were for him and I said for him to go to a general eduction class for kindergarten, she told me that would never happen, i left that office in tears! Well my son went to kindergarten last year in a general ed class and did fantastic and is now in first grade. You have to have faith in your child and just love them, they will show you over and over again how strong they are and how magnificent they are too!

Anneliese - posted on 11/11/2008

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Hi Carrie,
I am the adoptive mom of a 24-weeker who is now 5.5 months old. My lil Kai does not have tone issues, but i would recommend you join the yahoo micro preemies moms group at http://groups.yahoo.com/group/PreemieBlo... It is a group for moms of babies born weighing under 2 pounds, like our kids. I'd ask the ladies over there about the botox treatment because they have a lot of wisdom and are always willing to help out if they can. Lots of them have kids with CP, or possible diagnosis of CP, or other tone issues and have tried all sorts of therapies. They have been such a great resource to me! xx oo Anneliese

Carrie - posted on 11/11/2008

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Thank you all for your responses and positive words of wisdom. Parents with full term babies are unable to relate. It is those who have been and are going through life with a preemie that can understand. My son to like Sarah's was diagnosed with PVL and the his increased muscle is making it tough for him to sit without support. His PT suggested trying Botox, there is a team in Syracuse that see children with increased muscle tone and treat them with botox injections. Is anyone familiar or have tried this with there child I'm interested in more info regarding this and its success.

Brittany - posted on 11/11/2008

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Wow... All of you moms are very strong women! My son was born 7 weeks early and was 4 lbs 6 oz. and I thought that I was scared out of my mind. He was diagnosed with sleep apnea and it was the scariest thing to see his monitor drop and the nurse rush over to pump air into his tiny body. He was in the Rochester Mayo hospital for 1 month and 1 week. He was pretty small for a while but now he is growing like crazy! Its so awesome to see him catching up to other kids his age and his personality blooming. He was born a tiny preemie and has grown into a crazy love-filled 11 month old. I wish all the luck and hope to the mother with preemies. It is difficult enough to have a baby let alone a premature child.

Sarah - posted on 11/10/2008

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I understand your frustrations. I myself have those fears. My name is sarah and my daughter Faith Anne Grace was born at 28 weeks. The big shock was I did not know I was pregnant. She stayed in the NICU for 63 days. God was with her all the was. She was never on a vent or on oxygen. She was on vapotherm but was on room air. She has been home now for 2 months. The doctors found a cyst on her brain that they are calling perventricular leukomalacia(PVL) in short CP. They do not know if she will have CP or if she does how bad. It's scary not knowing if she is going to be alright or not I am not a very patient person. She weight 2lbs 1oz when she was born she now weights 7lbs 12.5oz. She is a little fighter. The theropy team what works with my little on taught me infant message. they said that would help with the muscle tone. don't give up. keep bugging the doctors till they do something. If you would like to talk more just let me know.

Jennifer - posted on 11/06/2008

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Thanks Dawn,

That is great to know... My son is in the Birth - to Three Program and will attend the special preschool when he turns 3.. .I do have faith that he will be perfectly fine..

Dawn - posted on 11/06/2008

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My son was born at 28-30 weeks. He weighed 3lbs 10 oz and was 16 inches long. He was slow and a bit clumsy, but by the time he was going to kindergaten he had pretty much caught up with the kids his age. about the only problem he has now is his vision. He has worn glasses since he was 3 years old. He is now 26 years old and is married. Be patient and have faith. He may develop a bit more slowly than other kids his age. As he gets to be of preschool age, you should contact the school that he will attend to see if they have a special pre-school for kids with devlopmental issues. Our school district does. If they do, your son might benefit from the early education. There were kids with behavior, physical and mental delays that were 3 years old and up. These programs are funded by Federal and State agencies. These programs are great for the kids and the parents alike. The kids get one on one interaction with somebody besides their family members and the parents get a well deserved break from their kids. Another thing is to request that your family be added to your church's prayer chain. You can't imagine the difference the power of prayer. Good luck.

Dawn

Jennifer - posted on 11/06/2008

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Hi, I am a mom of a 32 week old preemie - he was all tied in his cord.. very low muscle tone at birth.. He was also breech. It was an emergency c-section - heart rate dipped and he was presenting butt first in the birth canal. Although Evan was not as little as your son -he too.. had many gross motor delays.. it sounds like your son is on the right track..crawling/and pulling up is a great start.. don't get discouraged. It can feel like forever. Evan never turned over, he hated being on his knees, his flextion was off, his movements were never fluid, he scooted on his butt for months and then dragged his left leg in an attempt to crawl. Evan did not walk until 26 months.. but he finally reached that milestone and even now at 31 months he is a bit uncoordinated and has some gross motor planning issues and some other things - But he does walk and is showing great improvements at his very slow pace.. He is also exhibiting some speech delays - which they say is normal under the circumstances. Just know my son is also being tested for CP could be a very mild case.. but other mothers I have talked to say neurologists jump too quickly to that diagnosis and that very often preemies have their delays.. so don't fret - I was actually glad to see your post. Maybe they won't be star athletes but oh well. It would be great to keep eachother posted on their progress and maybe put eachother on our friends list.. Jenn

Wendy - posted on 11/06/2008

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hi i am a mom of 3 boys my last one was 16weeks early to he was 2 lb 7 onces,but then he went down to 1 pound.he was in the hospital for 9 weeks that was the longest 9 weeks of our lives.he had alot of health promblemsbut he is 9 years old know.his health is ok know but he only weighs 40 pounds,and he has learning prombems and motor skill concernsbut he is in a speacail school and doing very good.i know how hard it is and if you need to talk or vent you can add me .stay strong and have faith there were so many times i almost lost him but he is here with alot of prayers and i call him my mirrice baby.take care

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