Hi, and thanks Lorraine!
My triplets just turned 2 in April. We have been going to the developmental ped every few months for follow up from the NICU. At our visit in December, the doctor said that she wanted to rule out PDD in my son. He clearly has language delays and attention issues but I did not think it was anything more than just being a busy little boy. We have gone to another dev ped, and have lots and lots of testing to do yet. I have to take the poor little guy today to get a bunch of blood work done. We have an appointment to look at an ABA based preschool in July. (does anyone use this approach for teaching their child?) The more I see him around other children his age (not just the girls) I realize that there is a lot more wrong than I thought.

Tanya
Erica,DJ(David)and Halley
4/07/02 32 weeks, 6 days

Hello
I have triplet boys who will be 5.5 years old on June 24th. Since age 2 have been getting sevices through EI then the school district. This fall they start regular ed kindergarten and will be seperated into their own classes. My son Blake has high functioning autism. He also many sensory issues. He is currently in special day class at our local school for the past 2.5 years. He gets OT, ST & ABA services at school and additional PT or OT privately. He is doiing great and his new IEP has no accidemic goals so he is on track with ABC/123 type stuff. Easton has mild Aspergers and some gross motor delay. Very bright child and immature at the same time. Most of his trouble areas are social issues. Ahead in academics. Hunter has a moderate hearing loss 40% in both ears and his aided. Hunter gets speech at school. They are almost out of school for the summer. they have been in the same preschool class which has been great for them. I am familiar with IEP's and getting services for the kids. This should be a great forum. I also work full time outside the home and am the current president of our local multiple's club. Life is very busy and I wouldn't change my kids. Easton has also worn a doc helmet when younger so I am familiar with Torticolis and Plagiocphaly.
The boys were born at 34 weeks. Blake had 7 days in NICU and the other two came home at 10 days. Blake was diagnosised with Autism at 2.5 years of age.
Looking forward to hearing everyones stories.

p.s.
If you have any questions with getting your child diag with autism or the services we have done with the boys please ask. danielle.draut@attws.com

Danielle
Easton, Blake & Hunter
1-24-99

Lorraine,
thanks for the effort to get this forum up and running so fast.

My triplets are going to be 2 the end of July. I have one son who had mild communicating hydrocephalus, which has resolved (thank goodness) and he also has Duane's syndrome in his left eye. He will have surgery in August or september. But developmentally he is doing great and we are down to just ST and an early interventionist for him--no more PT and OT. YEA!

Then there is my other boy-- we are waiting on our first visit to the developmental ped., and we see a ped neuro in just two weeks. When he was younger (12-15 months) i just assumed a lot of his 'quirks' were just his little personality, etc, but since about 15 months i have noticed that cognitively and developmentally he is not progressing, whereas the other two are by leaps and bounds. It is very hard for me to watch the other two become toddlers who are trying to talk and eating with forks and spoons, doing puzzles, doing the hand motions when we sing songs, etc, but to see Charles basically the same way he was 6 months ago. He doesn't say any words, does not gesture at all (sometiems we can get him to clap) and adamently resists any hand over hand 'help' whatsoever.

i'm anxious for his evaluations, i'm sure it will be a long road ahead of testing and followups, but hopefully we will get more help soon. he graduated from PT, and hopefully next week will begin OT, ST, early intervention and a special playgroup run by our EI office.

It is hard to essentially have 2 toddlers and one infant, which is what it feels like. i don't expect him to be just like the other two, i want him to be his own little person, but i also want him to be able to communicate (which would make his days MUCH happier!) and be able to stick with and play with his siblings and others his age.


anyway, thats my long introduction... Thanks for 'listening'. we are in a daily struggle to help charles cope with his hurdles.
i'm sure i will be back with so many questions once we see the nuero and dev. ped.

Meg

Howdy folks,

I truly wish none of us has to be here but I'm so thankful for an area to discuss my cercerns and issues with. My triplets were born at 26w2d. Ben only lived 4 days. Lauren had a Grade IV/IV brain bleed and developed hydrocephalus pretty quickly. She was shunted at 10 weeks. She had ROP laser surgery at 10 wks also and has been wearing corrective lenses since 11 months old. She has mild/moderate CP affecting 3 limbs (tech term: spastic diplegia super-imposed with left hemi CP). She has been in PT/OT since NICU days. She has a g-tube (MicKey button)and a Nissen Fundo for reflux. Other surgeries include incarcerated umbilical hernia, shunt revision to add 2nd shunt, tonsil and adnoidectomy and a dental surgery to fix some nasty teeth with nerves exposed. Lauren is doing well and started walking independently 3 months ago. I don't think I could survive her first year again but I'm so glad we've made it this far.

Maggie was the star 26-weeker. Only vented for an hour to administer surfactent. CPAP for 5 wks then home a couple of weeks after that. She has a hard time gaining weight and still only weighs 19.6lbs but is following her own little curve (no where NEAR the chart). She's very small boned and is just kind of petit. Her main source of nutrition is chocolate pediasure. She has some sensory issues but is exteremely intelligent.

Lauren and Maggie both attend EI's pre-school 4 mornings a week. Actually today was the last day for the year. They'll start again is August. They each receive ot/pt/st once a week at school. Lauren also receives private pt/ot weekly. Maggie won't qualify for services when she turns 3 but she'll still be able to attend school next year because of when her birthday falls.

Gina
Thomas-4
Maggie & Lauren- 32 months
^Ben^
William-13 wks

Lorraine,many thanks for getting this forum set up!
And thank you to Bo and Janet too!
Well,I'm Korrie, I'm a single mom raising 4 children. My girls are my surviving triplets-they were 24 weekers and spent 4 and 5 months each in the NICU. Robin had ROP that required laser surgery and now she wears glasses. She is very nearsighted but other than that, she is doing great! Abby is also pretty well on target with her peers. She is physically small for her age-about the size of a 2 yr old- but she's a tough little ball of dynamite! Abby had a speech delay and went thru EI,she had PT and ST then went into the school district program for 1/2 a school year last year. She decided at her 3rd birthday, that she wanted to finally talk to us. She literally went overnight from about 25 words to speaking in sentances. I felt like such a fool-like an overprotective mom! But she does still have articulation issues and requires speech but I didn't put her back into the program b/c of Henry's health. Abby also has ADHD and is on adderall XR. From the moment she became mobile I knew it! That girl is a firecracker and gives me a run for my money every day! LOL! My Mom tells me she is exactly the child I was (I also have ADHD)except I was worse! The Girls are 4 1/2 now and will start kindergarten in August 2oo5. My son, McLean , is now 2 1/2 and I believe he also has ADHD. The pedi won't let me medicate him this young (Abby started at 3) but I ,unofficially did a few days and he responds very well to adderall XR..... McLean also has a speech issue. BAsically,he talks like a robot.He was born with that funny voice-he's very husky sounding- and it never raised any flags for me. My neice has the same type of voice and so did I as a child. but we both have inflections when we talk! LOL! Henry's speech therapist and PT noticed Mac's voice and suggested an eval for EI so he's now in the program too and next month we start the 120 days stuff to get him into the school district program. I am taking him to an ENT next week to rule out any physical cause for his voice being so strange. (Strangers even comment on it.) He was my 40 weeker, 8lb 8oz baby! Last, and certainly not least, is my precious baby boy, Henry. He is 16 months old now and just the cutest baby in the whole wide world! Ok,I'm a little biased.... anyway, Henry was born with Down Syndrome. We were quite shocked as the ultrasounds (2) and triple screen test showed nothing. He was 4 days old before we had genetic confirmation. Henry was born with torticollis that progressed and he ended up with plagiocephaly also and a DOC band. He also had a heart murmur and a small hole in his heart. Both has spontaneously resovled, thank Goodness! His eyes are crossed, despite my lame attempts at patching, and next week he goes for surgery. Developmentally,I am beginning to see some delays. EI comes out and he has ST,PT and the coordinater comes out to work with him too. He recently learned to pull up to stand and he does it constantly! He is babbling alot and says about 10 words but not consistently. He also has 2 signs He is very sweet natured and always has a smile for us. He is such a joy and I couldn't imagine my life without him. Well,any of them really! Can't wait to meet everyone else!

Korrie~
^i^B/G/G 24 w 3d,1/17/00
B 10/31/01
B 1/27/03

<a href="http://lilypie.com"><img src="" alt="Lilypie Kids birthday Ticker" border="0" /></a>

hi all!
this group is a great idea!
my gbb are 3 years 4 months. in january, right before our third birthday my third born, bailey, was dx with autism.
he has been recieving speech therapy since he turned two through EI, OT since 2.5 through EI and started preschool through the special education classroom in feb. after he turned three. in school he also gets speech and OT. he has a significant speech/language delay and also significant sensory integration problems.
school is just about over here for the summer(two more days) and im so sad cause i have seen the best gains in speech and in social skills. he will continue to recieve OT and speech over the summer, but not in the classroom setting.
i think having triplets with one having special needs is such a mixed blessing. on one hand, bailey learns SOO much from his brother and sister on a daily basis and has two very good models to watch. but on the other hand, its SOO hard for me to watch them progressing and doing certain things right now (dressing selves, having in depth converstation, etc) while bailey is not ever close to that.
i would love to hear from others that have children on the autism spectrum and how they progressed with their speech and language. right now bailey only uses one-two utterances and really struggles to get his point across.

once again, thanks for starting the group...
julia, gbb, 3.4 years and g, 17 years who will graduate from HS in 8 days!!!

julia, gbb, 19 months and g, 16 years

My three were born at 27w5d and did the usual NICU stay with respiratory issues, reflux, etc. My boys (who are identical) were diagnosed with autism in January 2004 at age 2.5. Since then, DH and I have turned ourselves and our home inside out, getting every service possible for our boys, including getting the county to pay for ABA hours in our home (which they said they never did in the past.) Our children have been in the EI program since they came home, basically monitored because they were "at-risk" and I've heard from more than one outside source that the head of EI says they've screwed up with our family (which may be why they are being helpful to us?) Anyway, we are in the middle of our first IEP's. We are hopeful to send the boys to a non-categorical preschool for speech delays 2days/week and continue the home ABA program. We chose to not send them to the public autism program...it just wasn't where we saw them. (Our daughter will have 1 hr of speech/week for articulation issues and will be attending private preschool.)

Nevertheless, I am such a believer in ABA. Michael was nonverbal in March. Now, he speaks to us in 3 word sentences and really communicates, holds a conversation with us. (And usually tells us what he DOESN'T like! No is his favorite word! But it's so good to hear that voice!) Daniel is echolalic, and we are still working on finding out exactly what motivates him to communicate. We've been doing our Verbal Behavior program since April and I see such changes each and every day.


I am glad Lorraine got this group started!

Krista
Michael, Katherine & Daniel
7/25/01 27w5d

Krista
b/g/b
July 2001

Hello,

This is my first time posting on TC although I've lurked here for several years so I hope I'm posting this correctly.

My name is Sandy and I have all boy trips born at 30w3d who are now 5 years old. Jakob & Collin came home after 4 weeks and Brennan stayed until 7 weeks due to sepsis and bilateral inguinal hernia repair. All 3 of them received ST from 22 months until they turned 3. At that point they were evaluated with the school district - J & C tested out. B one was diagnosed with PDD-NOS by the school psychologist and I got a second opinion from a dev. ped. who confirmed the diagnosis. Now that he is 5 he was just fully re-evaluated for kindergarten transition and now they're telling me he has Asperger's - still spectrum though and he will be in an integrated kindergarten class. He receives ST & OT. I also had him enrolled with a Music Therapy Clinic at the local University for the past 2 semesters and he LOVED it. I will continue that through kindergarten as well.

Anyway, B is not on any medications other than lots of vitamins. I tried the GFCF diet and did not notice any changes in behavior. I decided to keep him off of dairy though.

-Sandy

Hello everyone. My name is Sharon and I have 3 lovely little girls, Emma, Sara and mOlly, who turned 3 in February. Emma was ddborn with a dandy walker variant, which basically means that her cerebellum never fully developed. As a result, she has global developmental delay and is currently functioning on about a 10 month old level, with scatters up to about 12 months. She began EI at 4 months and continued until she began preschool in February. She has made tremendous gains the short time she has been in school, although the transition was difficult for dh and I, as we both felt so intimately involved in all of her EI therapy sessions and, at the start of preschool, suddenly didn't have much of a feel for waht her days were like. We've extablished a good communication system with her teacher, however, and the school has an open door policy, so we are much more comfortable now.

Emma also has a seizure disorder, for which she is currently on trileptal. And, she was born with colonic atresia, which was resolved through 3 different surgeries.

Finally, Emma has a hearing and vision impairment, for which she wears both hearing aids and glasses (when we can get her to keep them on, that is!) She is blind in her right eye because her retina never attached, and she has questionable vision in her left eye (she last tested at 20/270). Her hearing loss is officially moderate, although I would clasiify it as mild based on the reactions I get to sound at home.

It has only been in the past year or so that we have really felt that Emma is interacting with the world around her. Up until then (for about the first 2 years of her life), she basically seemed oblivious to anyone or anything around her, so we are thrilled that things seem to be "clicking" at least a little bit for her.

Sharon

FINALLY -- a few moments of peace & quiet so I can post my introduction.

My triplets just turned 6 on May 18 and are former 27 weekers. Both Noah and Karissa had Grade II brain bleeds which evolved into PVL. Jazmine escaped the NICU with absolutely no delays or impairments -- you'd never know that she was a preemie.

Karissa was diagnosed at 18 months with very mild left hemiplegia cerebral palsy. Most people don't notice unless they watch her carefully. She uses her left hand only as a helper so her fine motor is delayed in actions that require two hands. She has a slightly abnormal gait and walks on her toes with her left foot but she just finished her first year of ballet.

Noah was diagnosed at 10 months of age and has moderate spastic triplegic CP. He has now had 6 surgeries (not all CP related). He walks in a walker for short distances but relies on his wheelchair for longer distances. He just finished up Young Fives with his two sisters - they will all attend kindergarten next year.

Noah also has a seizure disorder (currently treated with Trileptal) and wears glasses (has had two eye surgeries). His speech is pretty good -- a little impacted by his CP but most people understand him just fine.

That's the short version of our story...I didn't want to put everyone to sleep with my first post! :0)

Lori --
Mom to Zac (9/91) and triplets Noah, Karissa & Jazmine (5/98 at 27 weeks)

Lori --
Mom to Zac (9/91) and triplets Noah, Karissa & Jazmine (5/98 at 27 weeks)

Wow, a new forum, this is great!

My boys turned 3 in May and were born at 35+ weeks. The boys were developing well up until around 18 months of age. Alec & Devon started EI a few months before their 2nd birthday. Both had severe language delays. Devon was initially diagnosed as being with a hearing impairment. Later it was determined that his hearing was normal.

Just after Devon turned 2 years old, he was diagnosed with moderately/severe autism. We started an ABA program in the home last September. We are in the process of transitioning to our school district. Devon is currently non-verbal, but is starting to use some word approximations, like Mmm, Ooo, etc. He receives speech therapy twice a week.

We just had our first IEP meeting. Connor does not qualify for any services. Alec, whose speech has blossomed the last few months will continue to receive speech therapy. Devon . . . well, we are having our attorney negotiate his service

I think/hope that Devon is so lucky to have two brothers the same age to help him in his journey.

Colleen

Colleen
Mom to Connor, Alec & Devon
5/10/2001

http://lilypie.com>

I don't have a lot of time left to write an intro, so just the short version. I'm not a HOM mom, I have three children ages 1,2, and 3.
My three year old was diagnosed at 2.5 as moderate-severely autistic. She gets PT,ST(2x/week),OT, ABA(15 hours/week), hippotherapy, music therapy, and occasionally water therapy. She also goes to a special preschool 3x/week during the school year.
My two year old was born prematurely at 34.5 weeks and stayed in the NICU for 5 weeks. Aside from the usual preemie issues, he also develped NEC in the NICU and has ongoing respiratory and digestive health problems from birth. We knew at 15 months that he was autistic but did not get an official diagnosis until 18 months. He is also moderately-severely autistic like his sister, but also suffers from week upper trunk muscles and has feeding difficulties. Both he and his older sister have severe sensory problems as well as all of the typical autistic symptoms (severe language and social deficits, self-injury behaviour, etc.) My son gets PT,ST,OT, ABA (10 hours/week), hippotherapy, music therapy.
My one year old is a bundle of energy that is developing at an astonishing rate in comparason to her two older siblings. She is a tremendous help and role model to them and a spot of sunshine to DH and I. She is allergic to wheat, milk, and eggs so her dietary needs fit right in with my older two (both on GF/CF diet).
Karen

My signature line(s) tell the basic story, but here are a few more details- I have done a lot of research and have a lot of experience in the following areas, and would be happy to help anyone who may be interested, or just needs an ear

One of my sons has had almost all of the major (and minor) GI issues you can have including
short bowel syndrome: almost all of his small intestines removed, his ileocecal valve removed and part of his colon removed.
sepsis (many times)
many surgeries
g-tube feedings
j-tube feedings (we narrowly avoided this, but I did a lot of research and know moms with tons of experience)
liver problems related to TPN use
many transfusions and IVIG
pancreatitis
colostomy
bowel resections
broviac lines and home care w/ broviac lines
severe milk protein allergies and neocate use
fundoplication because of severe GERD
motility problems
bacterial overgrowth
*celiac disease and many related disorders and nutrition challenges*
familial polyposis (colon cancer gene)
endoscopies
colonoscopies
chronic dehydration problems and very frequent ER visits for fluids
fat soluable vitamin malabsorption (A,D,E,K)
short stature and endocronology issues
malabsorption
emptying studies and pyloric stenosis
gal stones
cholycystectomy (gallbladder removal)
stones in the common bile duct
biliary sludge
bile duct dialation
vagus nerve damage
extensive adhesions and surgeries
bladder dysfunctions
hydronephrosis
upper GI studies, abdominal ultrasounds, CT scans, MRIs and MRCP's
ERCPs
chronic pain problems and treatments
strictures and tortuous turns in the small intestines
chronic constipation
chronic diarrhea (you can have both if your lucky)

sensory integration disorders (my boys have sensory issues on both ends of the spectrum- a very interesting mix with the two of them together)
fine motor and gross motor dysfunctions
ADHD
learning disorders- visual processing and visual memory problems
spina bifida (minor)
scoliosis (minor for now and hopefully will stay that way !)

I also have experience w/ allergies, chronic sinus and ear infections, adnoid removal and excema (sp?) and persistant reflux (7 + years)

That's all I can think of for now, but I am probably missing at least a few things.

I am really glad that this new forum is here and that parents here now have a way of finding support for their unique challenges, and to feel like they are not alone in the challenges.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

HI
I think that this will be a nice place for all of us too> When I have the time anyhow
My trio turned this this past Jan. Grace, Faith and Hope and also have a surprise baby born this past Jan, Emma. I was also diagnosed with thyroid cancer this past March. So we are dealing with the cancer treatments and trying to keep up with everything. I was a former social worker who worked with some childrens mental health. Now a sahm. I noticed things were different in Hope at about a year but was in denial for some time and then finally started seeking help. She's been receiving school services since she was 18months and was diag. with autism/pdd last spring. She is high functioning however. She is very bright. Knows 1-30, all the abs and can read and spell (really) kinda like a rain man I guess. Her biggest word so far to spell out is warning. ANyhow she started sp ed pre school this past fall. It has helped out some. We are waiting to hear from a new group who is starting aba in our area to see if we qualify. She is doing pecs at home and school and is doing well. Some days are pretty difficult however, she gets so upset and screams etc and We just don't know what she wants or what to do for her... She does talk but receptive communication (back and forth talk) doesn't really happen. That's it for now
Je

jennifer

Hi,

Im Anglea, SAHM to 7 children, raising 5. My children are Heather 11, Jesica 9, Eddie 7 and Kevin (5), ^Kaitlyn^, Jake (5) and ^Hunter^. The quads were born at 36 wks. My two survivors are now 5 turning 6 next month.

Kevin has spastic quad CP, microcephaly (small head) cerebral atrophy (small brain) and CVI (cortical visual impairment/blindness) and has hip dysplagia. He began EI at 3 months old receiving pt, ot st and vt 2x's a week and at age 3 attended special preschool. This year he was in kindergarten , maindtreaiming in his regurlar kindergarten class and also attended special ed. Next year he will repeat kindergarten again next year (but will be referred to a 1st grader?? as put in his IEP). He had a very hard time getting down all the alphabet (which we think is due to his CVI). He received PT, OT and ST. He also receives home based PT and in July will begin home based OT and ST though at state waiver. In June he will attend the special summer program and get PT, OT and ST there. He uses a stanader/walker for short distances, a wheelchair for long distances and mainly comando crawls around at home (hes juut not read for a simple walker yet). His speech only constists of a hand full of words so he uses signs as well as a communaction device (tech talk). He is on enulose for constipation and has had a few surgeries,one being CP related.

Jake has a moderate/sever sensory neural hearing loss in his left ear and has mild CVI. He received ST at school. He wears a auditory trainer plus hearing aid which he began to wear at age 3 in special preschol. Reason for such a late start, his audiologist wanted him to learn how to hear with his good ear 1st. He will be going onto 1st grade next year. He has made wonderful progress, however he is struggling with reading. He can do it but it seems the CVI is causing some issues with his reading. We decided to go on and have him go to 1st grade next year and see by the end of the school year where he is. He still does have a few atriculation issues with a few certain sounds but has made huge progress this year.

Both boys attended diffrent schools which was a VERY hard chocie! But now that it is the end of the school year, I am glad I made this decision (which was based on their individual needs and what each school provided). Jake will go ahead on go onto 1st grade, Kevin will be repeating kindergarten. I was very worried about this in the begining of the school year but now can see it was and is in the best intrest for each child. The boys will be going to diffrent schools until highschool.

Thanks for getting this form up and going Looks like it's off to a great start and many will benefit from it.

Angela~mom to 7
H~11
J~8
E~7
Quads~ b/^g^/b/^b^ 7/98 @ 36 wks

Angela~SAHM to 7
Heather~12
Jessica~10
Eddie~8
Spontaneous Quads~ 7/98 @ 36 wks
Kevin~ 6; cp, microcephaly, cerebral atrophy, CVI
Kaitlyn~ ^i^ @ 26 wks gestation
Jake~ 6; sensori neural hearing loss, mild CVI (cortical visual impairment)
Hunter~ ^

Hi,

Im Anglea, SAHM to 7 children, raising 5. My children are Heather 11, Jesica 9, Eddie 7 and Kevin (5), ^Kaitlyn^, Jake (5) and ^Hunter^. The quads were born at 36 wks. My two survivors are now 5 turning 6 next month.

Kevin has spastic quad CP, microcephaly (small head) cerebral atrophy (small brain) and CVI (cortical visual impairment/blindness) and has hip dysplagia. He began EI at 3 months old receiving pt, ot st and vt 2x's a week and at age 3 attended special preschool. This year he was in kindergarten , maindtreaiming in his regurlar kindergarten class and also attended special ed. Next year he will repeat kindergarten again next year (but will be referred to a 1st grader?? as put in his IEP). He had a very hard time getting down all the alphabet (which we think is due to his CVI). He received PT, OT and ST. He also receives home based PT and in July will begin home based OT and ST though at state waiver. In June he will attend the special summer program and get PT, OT and ST there. He uses a stanader/walker for short distances, a wheelchair for long distances and mainly comando crawls around at home (hes juut not read for a simple walker yet). His speech only constists of a hand full of words so he uses signs as well as a communaction device (tech talk). He is on enulose for constipation and has had a few surgeries,one being CP related.

Jake has a moderate/sever sensory neural hearing loss in his left ear and has mild CVI. He received ST at school. He wears a auditory trainer plus hearing aid which he began to wear at age 3 in special preschol. Reason for such a late start, his audiologist wanted him to learn how to hear with his good ear 1st. He will be going onto 1st grade next year. He has made wonderful progress, however he is struggling with reading. He can do it but it seems the CVI is causing some issues with his reading. We decided to go on and have him go to 1st grade next year and see by the end of the school year where he is. He still does have a few atriculation issues with a few certain sounds but has made huge progress this year.

Both boys attended diffrent schools which was a VERY hard chocie! But now that it is the end of the school year, I am glad I made this decision (which was based on their individual needs and what each school provided). Jake will go ahead on go onto 1st grade, Kevin will be repeating kindergarten. I was very worried about this in the begining of the school year but now can see it was and is in the best intrest for each child. The boys will be going to diffrent schools until highschool.

Thanks for getting this forum up and going Looks like it's off to a great start and many will benefit from it.

Angela~mom to 7
H~11
J~9
E~7
Quads~b/^g^/b/^b^ 7/98 @ 36 wks

Angela~SAHM to 7
Heather~12
Jessica~10
Eddie~8
Spontaneous Quads~ 7/98 @ 36 wks
Kevin~ 6; cp, microcephaly, cerebral atrophy, CVI
Kaitlyn~ ^i^ @ 26 wks gestation
Jake~ 6; sensori neural hearing loss, mild CVI (cortical visual impairment)
Hunter~ ^

My boys just turned 3 and my DS Eric has VATER syndrome. He was born with only one kidney, on the right, a left radial club hand, he has a partial vertebrae in his spine that causes scoleosis and he also has bicuspid aortic valve in his heart. He also has tortacolis (sp?) and hypertonicity. He has asthma but not too bad. Relatively speaking though Eric is a pretty healthy kid. He was born with a thumb on his left hand that was attached to his hand by a skin tag so they remove it before he came home. Since he has had 2 surgeries to centralize his hand on his wrist/arm to improve range of motion and they made him a thumb by taking his pointer finger and moving it to the thumb position. He has had to have OT since he was 6 months old but last Dec tested out as he is doing that well. He has another OT still though who works on his neck/tortacolis and tight muscles. I feel very lucky that he is pretty healthy because VATER syndrome can be very bad. I have read that it is a rare disease and sometimes they do not survive very long. He runs and plays and does everything his brothers do although sometimes maybe a little differently. When his OT had said that he was special needs I was shocked because I have never really thought about him being that way. I try not to and treat him the same-never baby him by doing things for him-I always make him do it himself after helping him once or twice.
Jen
Mommy to Ryan, Eric and Kevin
June 2001 32.5 weeks
aka - The Wreckin' Crew

Jen
Mommy to Ryan, Eric and Kevin
June 2001 32.5 weeks

Hi to all. My situation is a little different but I do have one who requires special medical attention. I have bbg triplets who are 9mo born at 31 5/7 wks. I have one who had severe hydronephrosis (found on ultrasound and was the reason I delivered). His kidneys are small, cystic and poorly formed and he has been on dialysis for over a month now. The nephrologists did not give us a very good outlook from the beginning since he was just over 3 pounds at birth and dialysis is extremely difficult on a preemie. He's had a vesicostomy (hole put in bladder) to keep his urinary tract drained which since has been closed once a blockage was corrected. He has a catheter for dialysis and a porta cath for blood draws because his veins are impossible to stick. He's had a few UTI's which has destroyed what little kidney function he has remaining. When he reaches 22lbs, he will be a candidate for kidney transplant. He is halfway there. We have some feeding issues and reflux problems. I've been working hard on his gagging problem and hope we don't have to resort to a feeding tube. He is very small for his age and of course way behind in motor skills. We are enrolled in EI and have some play therapy but have not started PT or OT.

On the bright side, we did hold of dialysis until recently and the nephrologist said he is doing better than they thought he would, given his scary start. He is bright, happy and a very easy baby - far easier than my other 2.

My other 2 babies are very healthy and normal at this point. The other boy is standing and about to take off walking (at 9 mo-7 mo adjusted!). They are enrolled in EI just because of my concern for their development.

The medications and daily dialysis require much discipline and coordination on our part but we manage OK.

I'm glad to have found this forum.

Lynda
bbg 9-19-03 and a 4yo son

Lynda
Mom to
Nathaniel (future kidney transplant recipient), Audrey and Samuel
born 9-19-03 at 31wks 5days
Patrick 4 years old

I'm not a triplet mom (just a very proud aunt), but I've been posting here, so I'll introduce myself.

Our triplets are amazingly healthy for being born at 31 weeks. One of the little guys has chronic pulmonary disease with recurring bronchiolitis, but his problems have been managed with daily lung treatments. Someone is clearly watching over these beautiful babies.

I usually post in this forum based on my personal experience with my sons. I think of them as being perfectly normal, but every child has something.

My eldest son was diagnosed with ADD (not ADHD; he's almost hypo-active), but is probably has a very high-functioning variant of Asperger's. He's in high school, he's very gifted, and he's doing splendidly. He was born with an extra thumb on his left hand (I've posted about this before).

My middle son is hearing impaired (about 30% of his hearing in one ear; about 40% in the other), has a sub-mucosal cleft palate (all the way down his throat), speech issues related to his hearing. He has visual-perceptual problems with compensated dyslexia (sequencing). As a little guy, he had large motor and small motor delays, but although he's a bit awkward, he's really caught up now. He's also bipolar (DRD4) and ODD, controlled with medication (we love drugs!!!).

My little guy has no obvious problems, except for the family dyslexia.

As I said, I think of them as perfectly normal. When my eldest son was in kindergarten, there was a little developmentally disabled child in his class. One day, a special ed social worker came into the class and gave the kids a lesson on how to deal with people with special needs. At the end of the lesson, each child was told to draw of picture that showed the class helping the child with special needs.

The surprising result: Almost every child thought that they were "the child with special needs!"

Hugs to all,
~~ Jen

Auntie Jen
Mom to 3 teens <sigh>
Aunt to bbg triplets 10/30/03

I'm so pleased to see this forum!

My name is Melanie, I am 25 yrs old and a SAHM to my 5 children, Andrew (age 9), Jeremy (2 yrs), and my beautiful trio who are 3.5 months old right now.

Andrew, our 1st and adopted son, has ADHD, ADD, Explosive Disorder, and many other "labels" - when he came to live with us (at almost age 5) he was labeled with "oppositional defiant disorder", "bipolar", "attachment disorder", and "possible bipolar", in addition to the above mentioned. It was pretty sad. After 4+ years in our home he is doing so much better. Andrew was born drug affected after being exposed to cocaine, marijuana, & alcohol in-uetero. Andrew has many behavioral challenges, and attends a day-treatment private school to meet his many needs. I tried homeschooling him for 2 years and just couldn't do it. I was going crazy and he was not getting any better. Public school did not work out either. So far we've been so pleased with the private school, and the school district/county pays for most of it & our adoption subsidy picks up the rest. As much as Andrew can be difficult, he can also be very sweet and very bright! He is so smart! sometimes too much for his own good

Jeremy, our little red-head has no special needs at this time.

Our triplets were diagnosed with PVL at birth. All 3 head ultrasounds came back abnormal, with Mariah's looking the worst and Savannah's looking the best. The Dr's tell us that PVL is a big indicator for CP. Of course, they also tell us we will not know anything more until they are older -- like 18 months or so. Thankfully, I know a little about CP already as I cared for twin boys who had CP. I remember much of the daily exercises, the foot braces I put on them each day, etc. I cared for them for 7 years! It was my 1st babysitting job and I basically was part of their family from age 12 to 19 (when I got married). Now, looking back, I feel that God definitely had his hand in placing me with this family. It helped me to handle the news that our babies could possible suffer from CP much better since I was already familiar with it.

Well, that is basically my family in a nut-shell. I look forward to GTK all of you better!

Melanie, SAHM to:

Andrew (adopted) 12/2/94
Jeremy 7/25/02
Mariah, Ethan, & Savannah 4/14/04
Born @ 30 weeks-
3lbs, 5oz. 3lb, 3oz. & 3lb's.

Hi, my bbb triplets are almost 14 months now. I adopted the boys in Febuary of this year. They were born drug addicted to methadone and heroine, and were exposed to alchohol. J.J. had NEC (necrotizing entercolitis-when the blood supply gets cut off the the bowels and part of it dies), he had part of his colon removed when he was 4 days old. He now has short bowel syndrome. I finally found a great specialist in San Diego CA and J.J. will see him next week. At the same place he will also see a nutritionalist. He is very tiny for his age. His height and weight are below the 5th percentile. This is something the pedi has been concerned about. He is not gaining weight! He is soooo small and so skinny. He is 14 months and he looks like a 5 month old baby. He also has severe reflux. Hopefully the nutrionalist can help. J.J. He has been diagnosed as hypertonic and he has a follow-up visit at a neonatal neurology center on August 12. J.J just started to kind of crawl. He gets around but he can not get up on his knees. He kinda frog legs his back end and uses his arms to drag the legs. He has the first half of it but he is working on the back half. It is really kinda cute. He is a very irratable baby, possibly due to the drug exposure. He has an extremely difficult time calming himself and sometimes rages. This also might be neurological. We will begin to get more info as we see more specialists. The other 2 boys started to crawl at 12 months. Kevin just started to stand on furniture. Michael is thinking about trying to stand. All three boys have been diagnosed with strabismus. We see and eye doctor soon. In 2 months Michael and Kevin see a GI doctor for reflux that should have been gone by now. All 3 boys are going to see a geneticist for possible fetal alchohol effects or syndrome. Today the pedi mentioned that J.J. may need to see a endocorologist (sp?) I forgot to ask what kind of doctor that is. Does anyone know? Michael is a tooth grinder. I know it is not special needs but oh what it does to my ears. He does it all day long. It is like nails on a chalk board!! All three boys have serious underbites that can not be corrected by orthodonics because it is actually their jaw that is out of place. There gums do not match up. They will need surgery to correct it. Oh ya, they are lactose intolerant. I am sure that as time goes by this will not be the end of it. I will keep you updated when we see the specialists.

BBB Triplets Born 2003

I have 10 month old ggb triplets that were born at 27w6d. The oldest girl, Zoe, had a Grade III brain bleed at birth and developed hydrocephalus as a result. Her first surgery for a shunt was at 3 weeks of age and her last was 3 months ago. She has had a total of 11 neorosurgeries and was treated for bacterial and fungal menengitis during several shunt revisions. She is doing great now and receives OT and PT 2 times a month. Developmentally, she is performing around 4 months of age but mentally, she is on par with her siblings. My other daughter, Megan, is perfectly healthy. She never qualified for any services. My son, Clay, receives OT services twice a month to strengthen his muscle tone in his legs. He had dual inguenial (sp?) hernias removed and he has 2 hemangiomas. One is on the side of his head and the other is in his ear. The ped. ENT is watching it to make sure that it doesn't grow and obstruct his ear canal.
Megan and Clay are crawling and pulling up and Zoe watches as she lifts off of her tummy and smiles at them!!!!!!!!!

Kim
Wife to Ben
Mommy to Zoe, Megan, & Clay
Born 10/05/03 @ 27w6d

Kim
Wife to Ben
Mommy to Zoe, Megan, & Clay
Born 10/05/03 @ 27w6d

Hi, My name is Julie and I have 4 children. We live in New Jersey. Our triplets GBB just turned 5yr old in July (Victoria,Daniel & Jordan). We also have a 3 1/2 yr old boy Dillon. One of our triplets Jordan, is PDD (Autistic), and had been recieving EI since age 2 and at age 3 started pre scholl disabled in our public school and is doing well. He also has some OCD issues that we started giving meds for this past year and it has really helped. Our little guy Dillon has the same diagnosis PDD and also recieved EI services since before age 2. He will be starting his second year of pre school disabled in september. Dillon is doing well but I'm hoping to see a little more progress this school year do to a change in teachers. He has Jordans teacher this year who is just wonderful. Our other 2 triplets are very typical 5 yr. olds and really help alott in teaching our other 2. Anyway thats our story.
Julie

Julie

Hi,

My bbb were born at 30 weeks exactly, after a horrendous pregnancy. I'm suspecting now that the pregnancy might have been compromised by the same in-utero problem that has left one of my boys with PVL and CP. Owen is a little fighter, though, and he's already doing far more than the doctors give him credit for. Jackson and Casey are moving along well, cruising the furniture and getting into everything. Our oldest son, Coby, is fabulous.

Looking forward to seeing more on this forum!

Elizabeth
Mom of a 7-year-old boy and bbb, born 5/23/03 at 30 weeks.

Elizabeth
Mom of a 7-year-old boy and bbb, born 5/23/03 at 30 weeks