25 week preemie boy now 3 years old with developmental delays

Heather - posted on 04/16/2009

Thanks for your info.  Very interesting.  We have done hearing tests and he definitely hears well.  I appreciate everything you said though.  What a great advocated you are to help children that are not even biologically yours.  I'm proud of you!!

Jennifer - posted on 04/16/2009

How extensively has his hearing been tested? I had a foster daughter who was misdiagnosed as MR and it turned out she was deaf (this all occured with her birth parents who were no where near diligent in helping her). Because of her developmental age (about 18m when she was actually 4yrs) and the type of deafness she has the normal hearing tests were considered inconclusive and her diagnosis was being based on intellegiance and behavioral testing. It took a test where they put her under and then tested the nerve reflexs to the bone and have physical evidence of her deafness to have her diagnosed correctly. The only reason I bring this up, because it is very evident you have been advacting for your son BIG TIME, is what you said about your son communicating with sign. Once my foster daughter started learning sign, which was then her "language" she took of and developed language in a very normal way. She is now 8 years old, has been adopted by a wonderful family whom all sign fluently (my family was learning right along with her) has just about caught up with her peers, she is even starting to read! All things we were told she would never be able to do!!! As you said most of the doctors were not helpful and it took us (and a very special EC teacher) pushing and pushing to set things strait. As a former kinder teacher I see it all the time, the "professionals" focus too much on the behavior and miss the cause. I just wanted to share incase it could be a hearing issue and also hopefully encourage you to stay strong and keep advocating!!!

Heather - posted on 04/01/2009

Hi wanda, glad to hear your child is doing well.  Those days in the NICU are like no other.  congrats on being home.  I really don't know what I meant by "ignored and avoided" myself. Ha!  Children try to interact with my son, but he is not interested.  He is currently in special education preschool through the public school system.  It is going well.  He receives OT, PT and ST and always has.  Speech is definitely his biggest delay.  My advice to you is to stay on top of your child's development at all times.  Our pediatrician did not see the "red flags" and has never been any help to us.  I have done it all myself by finding other resources out there, which there are many.  Good luck to you and your son.  I wish you the best.

Wanda - posted on 03/31/2009

Hi Heather!

My son is  a 25 weeker and so far we have been very lucky.  We spent 114 days in hospital, had a few scares with NEC and bad infections but so far so good.  He is 14 months (11 corrected) and he is delayed in his milestones.  He's rolling but not crawling or walking, just this week he's started to pull himself up.  He does babble but the only thing he says is 'dada'.  He goes to a follow up with the hospital every three months and althought they are pleased with his progress, I still worry about his brain developement (like your son, all tests done in hospital came back normal, no brain bleeds).  My son has no interest in kids his own age (he's an only child) but loves to watch older children.  I've enroled him in story time at our local library, I'm hoping this might encourage interaction with kids his age and maybe pick up on crawling and walking.  I worry about his developement all the time but some things we won't know for sure until he gets a little older (such as speech).

I'm curious as to why you say you get 'ignored and avoided'?  Is it because your son isn't social?  And who's 'ignoring and avoiding' you?  I hope it's not family.  You don't have to answer if you don't want to, that line just peaked my curiousity.

Heather - posted on 02/19/2009

Thanks, Amy!

Amy - posted on 02/18/2009

My son was born at 36 weeks.  He had developmental delays that will forever hold him back from his peers though not as much as your son.  Garrett did not speak until he was well over 2 and like your son, he learned sign language.  This helped me significantly because I had another baby to attend to at the same time.  Both the children picked up on and used the sign language.  My suggestion would just be to keep doing what you are doing.  Encourage him to communicate, using both the sign language and attempting to talk.  It is very tiring, I know, but anything worth having is always a lot of work...especially kids.  Sounds to me like you are doing a very good job so far by recognizing the signs and getting him the help that he has received so far.  Keep your chin up.  Things will improve with time and patience!

Heather - posted on 02/18/2009

Thanks Tracy!  Did your daughter always have problems with speech?  Did she babble, such as ba ba,, ma ma, dada, etc and follow the normal progressions of speech?  My son completely understands speech, but cannot says works himself . He even does sign language for communication.  At 4 yrs old, does she have a large or small vocabulary?  When did she start saying actual words?  I am sorry she has had obstacles, but I am also glad to hear this similarity.  I really appreciate your sharing.  Sincerely, Heather

Tracy - posted on 02/17/2009

My daughter was born at 27 wks 5 days and except for a few scares with PDA and hemoglobin levels we survived the 3 month say in the NICU.

From our developmental follow ups she seemed to be sligthly behind but nothing they were worried about her having trouble to catch up on.

Now at 4, she seems to have pretty much caught up except for her speech is still a little off.  She can comprehend what you are saying, but can't actually say it herself clearly.  Unfortunately with preemies each one has their own timing on things, but keep working with him and I am sure it will come.  We found a structured home daycare that has done amazing things with our daughter and brought her along way.

Christa - posted on 02/11/2009

Thanks for the advice... and the good news (smile)! I plan on watching Lexxi very closely!

Heather - posted on 02/07/2009

Hi Christa, what a long, scarey road in the NICU, huh!  I am so glad she is home with you now.  Declan, my son, did meet the early developmental markers.  He was never very verbal, but everything else was normal.  It was around a year old before we started seeing delays.  I encourage you to pay very close attention and not depend on the medical community to guide you.  If you feel she is having any probs at all, early intervention is definitely the key.  If we would not have started all the therapies so early, I don't know where my son would be today.  Congrats on your daughter.  By the way, girls that are born preemie statistically do much better than boys.  That's some good news for you!  Have a great day.

Heather - posted on 02/07/2009

Thanks Kimberyly.  How old is your son now?  My son has been in OT, ST, and PT since 1 year old.  We are very fortunate we started such early intervention.  Declan, my son, constantly progresses, it is just very slow and very delayed.  Speech is definitely our biggest delay at this time.  Does your son have older siblings?  I think that might help too.  Declan does not and has never had much interaction with children, other than at the park, etc.  I am pregnant with a daughter, so we hope she will be a positive influence in his world.  Thanks again.

Christa - posted on 02/07/2009

Hi Heather... My daughter Alexxis was born at 25 weeks and weighed 460grams. She spent 99 days in the NICU. We were very fortunate that aside from a PDA ligation when she was only 10 days old, we haven't had any major problems. Alexxis is now almost 10 months old, but only 6 1/2 mths c.a. So far she has had her first Neonatal follow up and is meeting her milestones. She has passed the first 2 hearing tests as well.  As you know, with a preemie born so small there are always concerns in the back of your mind regarding any future development problems. I'm wondering if your son met his earlier milestones prior to crawling and walking? Your family is blessed to have such an amazing son!

Kimberly - posted on 02/07/2009

My name is Kimberly Ramos, from NYC and my son was born at 26 weeks; 1lb. 10oz. Just like all preemies, he has developmental delays but thank God with the help of early intervention, he is coming along. His speech has not "kicked" in as of yet but he can surely babble. He is currently receiving occupational, physical and speech therapy. It can be frustrating at times of course because you do want your child to develop and reach above and beyond his potential. Thank God, overall, my son is healthy and I cannot say today that he has any of the traits you mentioned but I would like to help you in any way, even if it's an ear whenever you need to vent. I pray for you and your family. Take care.