Long Term Effects of IUGR/Prematurity?

Hi ladies!

I have twin boys who will be 2 years old in 2 weeks.
They were born at 36 weeks; Cody was 6lbs 9oz and John was deemed IUGR (from earlier in the pregnancy) and was 4lbs.
His small size and failure to grow were due to his placenta. It was a grade 2 already at 20 weeks. When he was born it was calcified (dead) everywhere except a small portion around the umbilical cord. He was also "dry" and his skin was cracked from the lack of fluid. We got him in the nick of time. We were told they weren't sure how much oxygen he was getting and that we "should keep an eye on him until he goes to school" to make sure his brain is working fine. There was no bleeding in the u/s they did on him.

Thanks to my proactive team of doctors, both boys were breathing on their own. Cody never saw the door to the NICU and John was there only briefly.
John had various "small" problems as he was growing up like immuno deficiency due to prematurity (improved), GI Reflux (treated with antacids until he was 9 months old), he is tall but very skinny and some feeding difficulties and low appetite.

He met some milestones very early like sitting up unassisted (4 months!), crawling (5 1/2 months) and he walked at 13 months (12 months corrected).
And that was about it.
He still remained a "baby" after that. His brother is growing into a "child", talking, doing things, understanding and following commands and John is acting like a 1 year old.

He also walks "funny", has a prancing, unsteady gait and walks on his toes. He also hold his arms by his sides raised and folded. He is also exhibiting "flapping" especially when excited.
He speaks 10 words and most are cut short. "Ju" for juice, "Doo" for Kandoo etc.
He does not follow commands, cannot point to his body parts and is not intimidated when we scold him. He is also fearless and get into trouble all the time.

They are doing a series of tests on him including karyotype testing for Angelman's syndrome (he fits the clinical profile), an EEG and a brain MRI under sedation.
He IS smart he initiates play, is very social etc. I do not think my child is mentally retarded but I am worried.
So far the official diagnosis is "prematurity and IUGR" pending the results of the tests.
What I'd like to know is what are the long term effects of IUGR and prematurity?
There is apparently some sort of "blockage" in his brain that does not allow him to operate like other 2 year olds and he will not "outgrow" it. I do not believe its genetic.
He does need O/T and P/T and speech therapy.
I am just so worried about all these tests.

When I was pregnant I used to think that if my babies made it past 24 weeks they would be fine (we were trying for 3 years to have a child). But now I keep thinking that if being born a mere 4 weeks early and you still get a child that is different and has seen the inside of a hospital more times than you have in 30 years, I can't even being to think what problems he would face if he was born at 25, 28, 32 weeks etc.
Such a delicate, delicate balance! Its mind staggering.

Please share any info you might have and your personal stories. I am looking mostly for what I can expect from now on. I am hopeful that with a little help in the physical department he will walk like other kid and talk and stop being so hypermotoric all the time and will be able to attend maistream school next year (as he is they can't give me the OK to send him to a school he is too active, too defiant to be a part of group activities as I've said he acts like a 1 year old)

Thank you in advance for your replies and for your time!
Best wishes
Tina

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good day to ya .. dont know if i can be helpful or not. just wanted to comment any ways
my son was born @ 24w2dys 1lb 10oz and spent 4 months in the nicu he had grade 3 & 4 brain bleeds and has a shunt still has bpd and its like i guess i was picked since i consider my self strong and paitent and prayerful. althought i hate my baby came early i thank God daily just for the opportunity t hat i have now. and i tell ya it seems like it can get rougher by the day and depressing soemtimes but i keep surronding my self with family and friends that really care about my sons well being. (thats 1 suggestion) now my baby is 18 months 14 months adjusted. and he is the happiest thing i tell ya he is such a delight every where we go the nurses fall in love with him.. he is a cuddler. now age/developmental wise he can vary from hour to hour. when he is with his dad he is a little boy when he is with me he is a baby. when its time 4 meds and feeding he is a baby. when he tired of being held he is a littl boy . on the floor tummy/kick time and with his toys he is a litle boy. dad has to pull rank sometimes when he is fighting to not have his nose cleaned or his gumms wiped (fake teeth brushing). sometimes he thows things mainly his bottle and i fuss .. mr man is fearless as yours. when his feelings are hurt you can really tell when he bites and i fuss he laughs its crazy. his activity level is like he is a regular lil boy. here is the deal .although he is a strong kicker and on his tumy he is a strong swimmer and can get to where he wants on his tummy kicking and swimming but my son does not roll over freely only rolls with encourgmnet he can go from back to side to tummy... once on tummy he is stuck till some one gets him... he can not sit for more than 20 seconds w/o support b-4 he goes wobbling over..its kinda funny since once he falls over he knows how tio kick about and get on his tummy and off he goes. remeber the inch worms? he is mr wiggle worm.!. he does not crawl he does not pull up he is no where near walking he does not even put weight on his feet when he stands.. he has full range of motion with the legs and hips you should see him kick and throw a tantrum with them legs and hands but muscle tone in lower back is extremely low increased therapy wil help so they say i think a lil prayer will also work .also his shunt is on his right side so his right hand is not as strong as that left but he is getting there.
.here is my backwards journey.. after being home 12 months frm the nicu ...august found out my son has epilepsy ...sept was 13 months home from the nicu found out son will be getting feeding tube this month of november....october was 14 months home from the nicu
just fund out 10/23 my son has cerebal palsey.... whoa!! am i going backwards or what. then jus speaking with hubby about reading ont he internet jus this past tuesday the pediatricans will be screening for autism twice on the 18 and 24 months well being check up my son 18th month well being chk up is monday 11/5 i alrdy see the warning signs... he shows full ranges of emotions but he does not waive hello or good bye nor does he point.
i have been so overwhelemd since august but i choose to celebrate his life and pull from that little mans keep on trucking spirit ya know.. truthfully i have not told all the family nor all of my friends since naturally i am not ready to deal with the ignorance of anyone who does not understand. or just dont get it nor and i especially dont want pity or anyone looking at my baby any differently so for now i'm keeping my mouth shut. when we found out he has *cp* we were told about all of the walking and special standing equipment and braces he might need and special wheelchairs he may need to get him ready for pre-k @ age 3.. now that was a blow, since i never thought about school duh me but they sure gave me a reality check. having a preemie baby at any stage is truly trying. i think i got it bad but then i think about moms whose babies did not make it out the nicu and then i think about the mom whose baby was born the week b-4 mine her lil guy stayed inthe nicu until he was 13 months old . wow! and i'm complaining? not really just expressing my thoughts. then i think hey in the nicu i saw moms carry their babies 39 and 40 weeks who have just as many if not more challenges than we are facing. so in the meantime my son just got evaluted for ealry intervention for the 2nd time... and now we are getting busy all therapies 4 times a month speech developmental occupational and physcial. are we going to be busy or what!!
thanks for listening.reading. dont know if i was helpful in any way but it seems like we are experincing the same things.
i'm thinking of my son needing and having a walker. and a special wheelchair ramp on the front of my house whoa!! mean kids from school. think i'll teach him ju jit su a little martial arts ( thats not the way to deal with that) sure felt good saying it though
lets just celebrate out toddlers lives in the forms they were given to us.. things could be worse even if so, i dont think i would love him any less

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Hi
My twin daughters were born at 32 weeks 6 days.
They are almost 20 months old and receive speech therapy.
I am worried about long term effects of prematurity in their case.

I am learning a lot through their speech therapy sessions.
I was given a list of desirable toys for them and there are somethings i would normally not buy for them,
Like say doodle pro.I was esp encouraged to buy it.If you see the box it indicates for 3 + years but in the speech therapist's list it is for 18 months old kids.
Anyhow i baught one each for girls and they love it! and already know how to use to rub off stuff after writing on it!!!

Shruti

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Tina,

I wanted to share with you some of our struggles with IUGR. My son was delivered at 26 weeks weighing 1 lb 1 oz. He was 11 inches long. He was in the NICU for about 4 months. He was on a ventilator for over a month, feeding issues, weight gain issues, kidney issues, and hearing issues. He turned two in August and still have some issues. Some of them are similiar to John's issues, so it may not all be from the Angelman's syndrome. As of today, none of his doctors or therapists have mentioned anything besides ADHD. And that is just to watch out for it as it is common for preemies.

At Mitchell's two year checkup, he FINALLY hit 20lbs and was 34" long. He is finally on the scale for height (lower 5th %) and still has not hit it for weight. I can't say that he is picky or a bad eater. Some days are better than others.

When he turned one we started giving him pediasure shakes (250 cals). I then found Ensure for weight gain (350) cals. Our Nephrologist suggested mixing Carnation Instant Breakfast with whole milk (300 cals) for an extra boost. The carnation is also much cheaper. We obviously try to give him all the high calorie food he wants. Unfortunately for us, he likes fruits and vegetables. He also does not sit still, is always on the go, which does not help with the weight gain.

Mitchell has never really hit his miles stones when it is "normal". Granted we had about a 3 month leadtime to try and hit them, and still he would sometimes miss. He finally started sitting on his own when he was nearly one, crawling was earlier, walking was probably around 19 months. Now that he is two, the pros do not take into consideration he was born three months premature.

When Mitchell was learning to stand and walk, he would stand on his tiptoes. There are still times when he will walk on his tip toes. His physical therapist is not sure why. She thinks it may be out of habit. She is concerned about it because it will shorten his muscles if he continues to do it. We try to correct him, but it's a little hard.

I am not sure if you have taken John to an audiologist, or if it has been suggested. When Mitchell turned one, he was officially diagnosed as hearing impaired. He has hearing aids, just does not always wear them because he can hear without them. The concern of the doctors and speech therapist is his language. He may not hear all of the sounds to words, so when he hears and says "juice" it may come out as "ju".

Mitchell is fearless and is in trouble quite a bit as well. When he is in trouble, he usually laughs. He is very social and will try anything. It seems the more dangerous, the better. I have not decided if it is because he takes after me, according to my mom, it's the terrible twos, ADHD, or a combination of everything. I bought a couple of books regarding strong willed children and ADHD. I hate to label him ADHD, but I need help in dealing with this. I don't even bother with time outs because I know he won't sit there. I don't want to make disciplining a game to him. I hate to ignore the bad behavior, but it seems that if I do, then he will stop whatever it was he was doing.

I have talked to my Pastor's wife, who is also my Pediatrician's nurse about this. In her eyes Mitchell can do no wrong, and she is definately his third grandma. Mitchell is very smart and can figure anything out. My nephew was born 7 weeks before Mitchell. Although Conner is hitting milestones like he was supposed to, Mitchell could figure out how things worked before Conner. She thinks that his brain is just going a mile a minute and he is thinking about everything. His thoughts can't keep up with acting them out. Does that make sense? I can't explain it as well as she did. I also try to keep in mind that some of our great inventors were premature...

Through our early intervention, Mitchell goes to "school" once a week for an hour. We stay there with him to help out. There are 5 or 6 kids in his class. I was not worried about the social part of school. I was worried if he would be ready for the "learning" part of school. His attention span is low if he is doing something he is not interested in.

It is very structured once we get there. They play for a few minutes, sing a couple of welcoming songs, then it's time for art, then they play in their gym, then it's snack time, then they play in the sensory bin. Each child is there for a different reason. What is also great is we see the physical therapist and speech therapist. He has only been there twice, but hates to leave when school is over.

I realize your struggles are different than mine. But maybe this will help you a little bit. Like I said earlier, nobody has diagnosed him with any type of syndrome. Everything has been "linked" to his prematurity/IGUR. I know it's hard to not compare him to other kids or his brother. But I have tried not to compare Mitchell to others. I know he is going to do what he's going to do when he's going to do it. Althought it frustrating and stressful, there is only so much I can do as a mom.

Take care,
Jodi

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Thank you ladies for your stories and your support!!
Jodi, I especially thank you :)

Mitchell sounds a LOT like John!!
I too do not think he has AS. I saw a couple of kids with AS while at the neurologist's and they were SOOO different than John.
Yes SOME of the things he does are similar to what AS kids do, but it was obvious he is really not like them when its all said and done.

Hearing impairment actually runs in our family. My mom is very severely affected. Her speech is typical for a hearing impaired person but she can read lips so she appears to be "hearing" what you say to her.
My brother also has some hearing loss and I have a mild, very mild, form of it. It does not affect my day to day interactions unless its a noisy environment or people are talking to me behind a glass (i.e. a bank teller).

We had John tested at birth but a second test was never offered to us. They seemed content he passed his first one.
Actually he's seen a LOT of the hospital since he was born and just now I am putting all of it together.

I am shocked to say the least, because even though they "warned" me in a sense they didn't.
The doctor came into my room late the day they were born and he said "your son down in the NICU is fine. He is breathing on his own, he is eating and holding his temp up... he is fine. Just keep an eye on him until he goes to school."
That was IT... that was my warning...

When problems starting to arise, first GI reflux, then his constant irritability/didn't want to be held, his low immune system... I just didn't put the puzzle together. I thought each incident was unrelated... but I guess its not.

He is quite tall for his age but weighs 26lbs and is 33" tall (he will be two on the 14th). He stll fits into his last year's outfits (although the pant legs and sleeves are short now).
I seriously think he DOES have a hearing problem.
We just got him to say a two syllable word "tea"... In Greek (I live in Greece) its a two syllable word and by God he sounded JUST LIKE MY MOTHER!!! He sounded.... hearing impaired.
I have worked with hearing impaired people before... trust me I know how they sound. I grew up with two of them... and I have the same problem (although you can only tell after I've asked you to repeat things, my voice is fine :))

Since we are doing the MRI, I requested for the hearing test. I will pay out of pocket for it if I have to.
I have to know!
Because I grew up with a mother who couldn't hear, it feels "normal" to me. I mean, a lot of people are shocked when they hear but in my eyes its the SMALLEST and more correctable problem one can have. My mom, my brother, my grandfather... they all did amazing things with their lives. Seriously I do not even consider it a problem as its been part of my life for 30 years.

I really hope thats the only thing wrong with my little guy. I can handle ANYTHING as long as its not his brain. He does sound ADHD and he sounds a LOT like your Mitchell Jodi.

I feel like we saved his life with the bedrest and the steroids and everything... now I feel like its the QUALITY of his life I need to save, you know what I mean?

I will keep you ladies posted on the results of our tests!
Thank you again for your time!
Have a wonderful week!
Tina

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I have been a special ed teacher for a number of years. I have had students with numerous disabilities due to prematurity, birth trauma, etc. The reality is that with these kids you don't know how they will develop until they do or don't reach milestones. I have had twins where one was very bright and the other had multiples disabilities (CP, cognitive impairment, hydrocephalus), where both had disabilities (one mild and the other more severe), one had CP and a mild cognitive impairment with the other totally average, etc. It all depends! I have seen very premature twins do wonderfully and be at the top of their class and a less premature child have a cognitive impairment. Keep in mind that not all disabilities have anything to do with prematurity or IUGR. Sometimes they just are! Keep an eye on your son. Love him for who he is and do the best you can for him. Be his advocate! When he is young you may end up with the diagnosis of Developmental Delay. I have seen these go one of two ways when the child reaches school: either the child truly had a cognitive impairment and no one wanted to "label" the child with that at a young age and have to tell the parents, or the child has low average IQ (75-80) and ends up not qualifying for any services because the child performs at his/her ability level. If you only remember one thing that I have said, please remember this: even if your child ends up in special education, you child has the right to be in the regular classroom! As a parent you can insist on a 1:1 for your child to make this happen in your child's "Least Restrictive Environment." Yes, there are times when the child is not able to function in the regular classroom because it is not a place where that child can learn, but this is rare. Your child's individual work and therapy can be brought into the regular classroom. The student I had for six years with multiple disabilities was in the regular classroom almost all day with a 1:1 assistant. Be your son's advocate and get him what he needs! Development is scary for all of us because we don't know what we have until we get there.

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Just wanted to share that I have had a similar experience with my daughter, Carley, who was born @ 33 weeks-speech and language delay, moderate toe-walking, difficulty with transitions, sensory processing issues primarily with the auditory area (current OT thinks she probably has Auditory Processing Disorder). We went through the school's early on program and we were given the label of developmental delay, too. Our docs also never warned us about the long-term effects, of which there are many now that I've done some research. I found some really good info. on the website created by the author of The Premature Baby Book-not sure of the website but I'm sure you could link to it through searching for topics related to this book. I also have worked with some kids with prematurity in my field (social work) and they have all shared similar characteristics that were labeled at one time or another PDD NOS, Autism, Asperger's Syndrome, ADHD. What I've seen is that meds only help minimally for ADHD-type symptoms. I think this is because when a child is born premature there is a difference in their brain development/structure that medical science has not figured out how to treat yet (nor has the mental health or education field). You child can only be given a label that already exists; it doesn't mean it's accurate. You're the child's best advocate and know what is right. Hang in there.

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Hi!!
I just wanted to thank you for your replies and update you, almost two years later!! :) :)

John, was diagnosed with mild Cerebral Palsy due to brain damage from in utero hypoxia. the placenta wasn't providing enough nutrients OR oxygen.
He also has 3 degrees of myopia and 3 degrees of astigmatism in each eye for which he wears glasses.
After almost 2 years of therapy, John walks almost normally now. No toe walking although lately his foot has started turning inwards.
He talks exceptionally well and has an amazing understanding of things, well beyond his years (the therapists are talking about a "gifted" child at this point since his I.Q. seems to be very high). He also has the memory of an elephant and a photographic memory at that lol. can't fool him ;)

In some areas he still operates like a baby like emotionally but he will catch up. Physically he is still very weak with poor muscle development especially in his torso. We are still on multiple caloric supplements as weight gain or rather weight LOSS remains an issue as he loses weight if he doesn't eat well even two days in a row :(
He doesn't have much stamina or strength, as I 've said his muscles from the waist up are underdeveloped but we enrolled him to swimming last February to help with that and he is doing better now :) (but still not near enough his peers :()
You can definitely "see" there is something different with John even though he is about 80% for *height* and is taller than most his peers (my grandfather was 6' 7") and so is his twin who is 45" at not even four years old.

John and Cody attend mainstream pre-school and they are adjusting well :)
John official list of conditions is this:
Cerebral Palsy due to hypoxia in utero which caused brain damage
Sensory Processing Disorder in moderate degree
ADHD
Hypertonia in his legs
Severe Hypotonia from the waist up
Vision impaired (wears glasses)
Slight hearing loss in left ear
Feeding issues (some of this stems from his sensory issues)
Weight gain and maintenance issues.
Persistent high IgG pointed to allergies affecting the gut - trying to live gluten free but it's hard as in Greece we do not have many gluten free products.

Reading this lost list you might think "poor baby" but let me tell you, John is the happiest, strongest, bravest little guy I know. He is just happy all day long... and the things he says totally blow me away :)
My little guys are definitely a blessing :)

"Different" doesn't always mean defective or undesirable!!!

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Wow! I didn't realise how old this thread was haha

Thanx for updating it i bet you bearly get a minute to yourself being a Mum to twin boys! I really am so pleased that John is happy despite the issues he has had to face :-) he sounds like a bundle of fun!!
How long did it take you to get him diagnosed? I am in the uk and have visions of not being taken seriously by the nhs, past experiences haven't been so good, noit much faith in them.
Do you mind me asking if you found it difficult to come to terms with? I am just worried that i am not strong enough to be strong for my little girl :-(

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Hi ya!!
Sorry, I don't know your first name :) Mine is Tina! :)

Well, it took some September until January basically. The genetic tests took forever to come back but we got the EEG and MRI results pretty fast.

I know only a little bit about how things run in the UK, I did study in Glasgow Uni so I lived in the UK for a few years but I have a very close friend whose little boy has Ring Chromosome 20 and they have been at it for a few years now so they "know" the system. If you send me your e-mail addy via a private message, I can put you in contact with her. She lives in Bracknell.

As far as how I came to terms with it... In all honesty, I didn't think I had to. John is my son and all of his issues, are part of who I love. I love him not in spite of his problems but BECAUSE of them. Because John's brain is the way it is, John is the person he is...and I love THAT person.

It was relief to get the formal diagnosis because up until that point I was just a neurotic first time mom .. NOBODY believed me when I said John isn't like other kids (and I KNOW kids because I am a pre-school teacher with knowledge in child psychology and I have worked as a nanny for many years so I could tell John wasn't developing like others).
I don't think I had time to "grieve" my dreams because from the moment we started it was "go go go" and the results we were seeing were spectacular and came fast, so I just rejoiced in the progress that was being made.

I do have my moments I worry mostly if John will reach a stage he will stop progressing when everybody around him progresses and then his differences will be SO much more evident but on the other hand, who says he will stop? What if he catches up completely at some point? Right now he is a year behind in *some* things and two years ahead in others (i.e. he can read simple words, speaks Russian - our nanny was Russian - Greek and he is learning English right now etc). It's just that in some ways he reacts like a baby still. He is still very immature in his behavior.

We want to try for one more child but I do have fears that I can't handle any more serious special needs than John and Cody's. I just want normal for a change. I want to spend lazy mornings in the playground instead of therapy listening to my boy scream because Physio is painful.

I do believe these little souls were given to me because I was the perfect fit for them. I tried so many years to have them, there is no doubt in my mind, there was no mistake in the Master Plan. ;)
I just want both of them to stand alone one day, confident and strong. "normal" is overrated btw ;) lol

I am here if you want to chat. You can send me a PM and I can send you my e-mail and whenever you feel like a chat, drop me a line :)
Many hugs... it WILL be alright you CAN do this and you WILL raise two WONDERFUL children :)
Tina in Greece

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ii Tina, I'm Liz :-) it really is a tonic to here from someone as positive as yourself!! Can you send me some of your vibes please? lol

Thanx for all the info you have shared, i can imagine that getting diagnosed will be long and drawn out but i am going to the drs tommorow if i can get an appointment and i am going to ask to be referred to a specialist, lets get the ball rolling. The physical therapy is what it is, but i need them to be testing for why she is like she is. I know she is on the young side but if i tell them my concerns they can look for things like cp surely?

I love how you see things, John is a very lucky boy to have such strong loving Mother!! I'm sorry i am just in such a state worrying about the what if's, that i am driving myself mad. I just got my Post natal depression under control and with all this i have similar feelings coming back. Like you say i think i will feel relieved get some clarification, good or bad.

John can read different languages?! That is truly amazing for any child his age! I bet you are so proud of what he has acheived! I guess he is labelled these health issues but they don't have to stop him progressing, who knows what the future holds? It may be that his behaviour matures with age but in his own time?
I can relate to just wanting normal for once, with the girls being conceived by ivf and twins and IUGR it hasn't ever felt normal lol I'm not fussed for normal either now i just want healthy and happy little girls.
It would be very hard for you to have another child with having twins and special needs but your life sounds like a very happy contented one and you seem like the sort of person that doesn't do things half heartedly so go for it, wishing you lots of luck with a future pregnancy that may crop up. Oh the twins will have years of fun picking on their younger brother or sister haha

Honestly you have been my inspiration! If i can have just a teeny tiny bit of your positivity my girls will be ok regardless of any health issues.
Thankyou Tina big hugs!
Liz xxx
p.s i will pm you my address

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Hi Liz!!
>if i tell them my concerns they can look for things like cp surely?

Cerebral Palsy is a blanket diagnosis that encompasses many physical hardships. Basically when you are having problems with your body/movement, they call is CP. Although it is categorized, the range, severity and how it affects everyone is VERY wide.
For instance, John had hypertonic lower limbs; they would not bend easily and he walked on his toes. He walked but the quality of his walking was off. That in the long term would affect his joints, muscles his whole body. Many kids with CP do not walk. That is why John's case is considered mild. He will walk and run and climb, just not like everybody else, you know what I mean?

His upper body is hypotonic, and his muscles aren't very developed. On top of the fact he is a scrawny little thing, this lack of body development does not help so he appears to have a large head lol :)

>I'm sorry i am just in such a state worrying about the what if's,
Honey don't apologize :) Even if your girls showed no signs of something being 'off', moms always worry about the what if's ;)
Besides it's a good thin you worry because you will seek answers. Worst case scenario you go through all the testing and they call you crazy and send you on your merry way ;)
BUT at least you will KNOW one way or another and formulate a plan :)
At the end of the day, isn't that our job as moms??

>John can read different languages?! That is truly amazing for any child his age! I bet you are so proud of what he has acheived! I guess he is labelled these health issues but they don't have to stop him progressing, who knows what the future holds?

He only reads Greek but he does speak English and Russian as well :)
When people hear the term "Special Needs" the first thing that comes to mind is mental retardation but not all special needs kids have mental issues.
Plus it is pretty common for PDD-Nos and SID kids to be very clever and gifted :)
Then again I am on top of both kids 24/7. We do things beyond their age, like take them to museums or read, do educational stuff, read encyclopedias. Their minds are hungry and I keep feeding them ;)
We do loads of imaginative and theatrical play, all these help :)

You have to be positive about it... any child, even a severely affected one, has GREAT potential. In many cases it is US who do our children wrong by giving up on them.
I am not willing to do that. When we got the diagnosis, the pediatrician said "Oh well, guess he won't be a College Professor" and I was SO mad. Who are you to predict my child's future and what he can or can't do!?!? You are not God, you don't know anything other than to give my kids shots and prescribe antibiotics!! If my child does NOT become a College Professor it will be because he didn't WANT to, not because he couldn't because he has special needs!!
I became so angry and thats when I vowed that I will not take this lying down. John survived 16 weeks in utero when they told us he would die and was born screaming! I wasn't about to let him down when he fought SO hard to come to life and earn this body, albeit defective it might be.

So I am teaching him to use it and not let it limit him. It is hard work but he was worked SO hard, harder than I ever worked in my life. I raise both of them with the sky as the limit. There is never "I can't" ... there is always "try" and if the don't succeed, they still get praises for trying.
And both have come so far and I am so proud. I wish I could take the credit but it was THEIR hard work that is paying off.
The world is such a wonderful place and they will experience it all, I won't let anything stop them and I hope to teach them that so one day they will go forth in this life with this attitude... the sky is the limit and I can do all, as long as I give it my best shot, but if it doesn't work, I am still happy because I gave it my BEST and I have no regrets... :)

I am not super woman, I am not anything special really... :) I blush that you say I am your inspiration :)
And in all honesty I am who I am because of my boys. They taught me SO much in those 4 years, they humble me. I am a better person because I am their mom, it is my privilege to be their mom :)

Many hugs
Tina

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Wonderful post Tina! And I love that part about College Professor!!

My son's Physical Therapist told me that my son has hypotonia...but I was positive that he has hypotonia in the upper body and hypertonia in his legs! Thanks to your post I think, I am right. DId your son had any tests to prove that dianosis?

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Thanks :) Glad I can help :)
>DId your son had any tests to prove that diagnosis?

Yes, he was seen by a board of doctors, a neurologist, a developmental pediatrician and a physical therapist.
They tested reflexes, how tight the muscles/tendons were, watched him walk and perform tasks like climb up and down stairs, crouch, reach for things and other things.

It IS possible to have a MIXED type of Cerebral Palsy!! :)
HTH!!
Tina

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Hi there,

Sorry for the delay in getting back to you! I have had my MIL and her 5 yr old son descend upon us at rather short notice so the house is a little overcrowded at the minute and my time on line is very limited :-( Hope you and the boys are well?

I have to agree Abrakadabra - another beautiful post!!
Since we last chatted i had Ruby in at the drs and he has referred her to a peadiatrician at the hospital because she can't sit up unassisted for very long, only rolls one way and the issue with her legs and feet. So i am pleased to be making progress :-) although the appointment is about another 4 weeks to wait PT is all set to go ahead and i cannot wait to get started!!

The last week has been a rather emotional one for me! I hate the unknown so i have struggled to know how to handle things lately.
I don't want to live off false hope that all will fine nor do i want to accept that there is more than likley something wrong with my little girl. If i knew what the problem was i feel i could deal with it better but all this waiting and worrying about endless things is driving me insane.
However my little superstar has made me so proud this morning!! I always put her on her tummy and she quickly rolls off or lays there kicking her legs about - well today i was in the kitchen and heard all this complaining coming from Ruby so i go check on her and there she was up on her hands and knee's rocking!!! So me thinks my girls is working on crawling :-D I never thought her arms or legs were strong enough to carry her - i underestimated my gem! So proud of her and has given me the kick that i needed! She is fighting and i should start too, enough with the moping around!

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