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Old 02-01-2008, 01:22 PM   #11
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Re: Intoducing my sn baby...and yours!

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Originally Posted by kaylabelle05 View Post
My older sister is a Psyiatrist (Physical Med and Rehab).
Yeah for physiatrists, my DH is one, well 18 more months of residency!! I ronic as our boy has needs their services.

Anyways I have 2 sweet boys.

Thomas just turned 4 last month, was late on all his gross motor milestones, since his fine motor was on track we were on the wait and see forever, when we moved at 18 months old for my DH's residency our new states IE took him on, we are on our second ped here and love him. Anyways he has moderate hypotonia, low muscle tone, so he tires easily, read we are out in public and if not moving he will just lay down on the floor. Love him. He has done great in PT since 20 months he actually just the other week rode a 2 wheeler with training wheels for about 25 feet!!!!! He also has muscle apraxia so has trouble figuring out big muscle movements. He also has SID and is at about a 2 year old social level with peers, but cognitively doing 2nd grade work at home. We are currently running the gammet of evals at cincinnati childrens hosp., just did the OT eval, which wasnt anything new as we have been in OT since 20 months as well, in march we have nuerology, speech eval with the administration of ADOS(to test whether on the spectrum or not) and then the psych eval.
The latest blow at his 4 year check earlier this month is the fact that he hasnt gained any weight since we started with this ped 18 months ago and they want to see him back in 3 months We already do either pediasure or most often carnation instant breakfast since you can make it thicker, and nutripals bars just about daily. So we will see on that too
He's mostly a love who just oozes into you, we have our hard days and off days but well we make it through.

Then we have David who just turned 2 this week. Hes doing good, has a slight speech delay but has been doing good in therapy and since his ear tubes went in is doing even better.

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Old 02-01-2008, 04:28 PM   #12
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Re: Intoducing my sn baby...and yours!

i would have never considered Daniel sn; but reading through two of the mama's on here; i think he is.

Daniel was born 2 weeks early; with on undersized stomach and partially dead placenta. The doctor's don't think this has ANYTHING to do with his issues now; but i think it has a lot. He was tounge tied when he was born and so he immediatly injured me. they put him on regular formula and he would SCREAM bloody murder about 20min after drinking it. I told them then he can't tollerate it; but they ignored me. We went home and the very next day we were in; because he had had 10 runny bms and no sleep; they couldn't find anything so they sent us home. Went to pedi and she switched him to soy; same screaming and now he had a horrid rash all over his body and constipation. At 3.5mon pedi, put him on Nutromigen and he slept for 13 hours straight!!! my dh and i would wake up and put our hand on his chest just make sure he was alive. We thought that this was the answer; wrong. about a week later he started throwing up his bottle and went from eating 5oz to 2oz and still throwing that up. Went to one GI doctor and he put him on Prevacid and sent us home. He would have a reaction to that about 20min after taking it. Stopped that and went to another pedi GI doctor; and the diagnosed him with MSPI and explained that the Prevacid had traces of milk in it!!! He is now on Zantac. Sooooo....everything is great right?. Until we started solids at 6mon...


He is able to tolerate sweet potatoes, broccolli, rice, blueberries, banananas(w/o seeds), and brown pear variaty. That is it!

Went back to the gi doc this Thursday; becuase he is now refusing to eat solids, and not tolerating his milk. He has also formed that ugly rash again. So he is now going to be having a tube down his throat and another one up his butt (sorry, i don't know the tech terms) and they will also be doing a celiac byopsy then also. My mom has celiac and i have never been tested.
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Old 02-03-2008, 09:38 AM   #13
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Re: Intoducing my sn baby...and yours!

My dd (age 5.5) has Pdd-nos (autism spectrum), anxiety, and sensory disorder. She is very high functioning and does well educationally Her main problems are with anxiety, regulating and self-control, social problems, aggression, controlling, emotionally very young, and her sensory problems.

Our ds (age almost 4) has reflux and asthma and it was terrible when he was younger from 15 months to around 3. He threw up every day several times a day and had diarrhea. It was aweful, and nothing helped him. For some reason, he has pretty much grown out of it He has an episode every now and then, but is otherwise doing really well!!

Our 8 yr. old dd has crossed eyes. Not really a special need, but thought I'd list incase anyone is going through this and wants to talk. She had surgery at age 2 and got glasses as well. She is doing well, but might need bi-focals in the near future, or possibly surgery again.

Our 11 yr. old has mild asthma.
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Old 02-03-2008, 09:44 AM   #14
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Re: Intoducing my sn baby...and yours!

Hi there, my son keegan (now 4) was a 28-week preemie and had a brain bleed. He has hydrocephalus (water on the brain) and we were told he had a high liklihood of having cerebal palsey and haveing severe learning disabilities. Luckily, he doesn't have any of those, but his first few years he had to have a number of shunt surgeries so we've spent a fair amount of time at the hospital. I'm hopeful he won't need any more shunt revisions for a while!
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Old 02-03-2008, 10:05 AM   #15
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Re: Intoducing my sn baby...and yours!

Hi everyone

Well I have an average 3yr old girl and a 1yr old with special features as my mother calls it.

Skylar was born at 37 weeks 1 day. At 26 weeks everything in my preg went wrong. I started accumulating massive amount of fluid, we found out we had a 2 vessel cord and she was massive. I was repeated told I had a "fat baby" and I must have GD. I was tested twice and no sign of GD. They were positive I would go into PL, but no she didn't want to come out.

She was born on Jan 16th 2007, immediately upon delivery things were drastically wrong. She was blue and had many physical abnormalities. She was intubated, head shaved for 2 lines and rushed to the NICU.

After 5 weeks of agony not knowing if she would live another day we got her diagnosis Macrocephaly Cutis Marmorata Telangiectatica Congenita (M-CMTC).

Quick rundown of issues....

-hydrocephalus (ETV on Sept 19th 2007 - no fluid issues)
-Pharyngeal and Tracheal malacia (exclusively g-tube fed)
-Obstructive Sleep Apnea (nCpap for sleep)
-Polydactylyl on right side (extra pinky and baby toe)
-syndactylyl on left foot (big toes and next toe fused - next 2 toes fused to 1st knuckle)
-Urogenital sinus
-6th nerve palsy or Wilms syndrome (not clear yet)
-hypotonic
-right hemihypertrophy
-vascular abnormalities (hemangiomas-internal and external and circulatory routing issues)
-face flat to concave

We have been blessed to have a few amazing Dr and nurses through home care and the Palliative and grief care team helping advocate for all children and families.

We have initiated several major changes in our health reagion. Our general consent form is being changed to give parent more control over their childs care, outpatient procedures no longer requiring signing a general consent form, Dr being trained to treat families as equals in decision making and gernally understanding the struggles of knowing when enough is enough.
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Old 02-03-2008, 07:31 PM   #16
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Re: Intoducing my sn baby...and yours!

Oh, how great! A SN forum!

My son Scott is 2 years old and has a rare chromosome disorder, partial trisomy 1. His diagnosis is the result of an unbalanced translocation of two of his chromosomes, inherited from my husband who carries a balanced translocation of chromosomes 1 and 14. Because of my husband's balanced translocation, about 60 percent of our conceptions will be unbalanced and will miscarry (I had four miscarriages prior to conceiving our son). Very rarely (about 2 percent of the time), an unbalanced conception will make it to term and be compatible with life - Scott is that rare instance.

There are only about 30 other recorded cases of my son's chromosome disorder, so not a lot of information out there. Scott is in perfect physical health, but he is globally delayed. He has low muscle tone, and at 2, he is only just now starting to take some unassisted steps. I imagine we are months away from him walking full-time. Scott started crawling just a few months ago, and he is not verbal. He babbles a ton and uses all sorts of jargon, though, and his speech therapist has no doubt that he will eventually have words. He is cognitively delayed, and we are told to expect to see a mild degree of mental retardation as he gets older.

Scott is enrolled with our local Early Steps program, and he receives speech and occupational therapies once per week. He also receives physical therapy twice a week and is just about to start special instruction once per week. We are very happy with our Early Steps program; his therapists are wonderful.

Scott is such a happy, little guy, and he's extremely social and outgoing. Everyone who meets him falls in love with his sweet personality. He is such a joy.

We have one other child, a typically developing 3-month-old little girl, Juliet.

Looking forward to chatting with other SN moms!

-Betsy
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Old 02-05-2008, 12:25 PM   #17
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Re: Intoducing my sn baby...and yours!

I'll chime in too....
I have 4 children, the oldest, a 6yo boy and the third, a 3yo girl, have speech delays and are both in speech therapy and doing great. My 6yo has astigmatism and will need glasses very shortly.

My second child, 4 1/2 yo DS is Asperger's, ADHD, SPD and I'm sure he is OCD too (so am I)...we've been through doctor after doctor and clinic after clinic...finally it was a doc in London (hour and a half away) that finally saw that I wasn't nuts and that my son was different. The SPD is totally out of control right now and our OT is doing nothing about it, the OT has been a waste of time for the last year, and unfortunately we can't change cause that would mean going back on the year long waitlist again. We just found a center for him in a nearby town that is for special children...it deals with the perioceptive systems in their bodies and works with the senses to improve their lives. DS starts there on Feb 13.

My fourth child, 10mo DD is SPD, server GERD and being tested for choromosomal and metabolic abnormalities. She take medication for the GERD at the max dose for an adult and will be adding a new med to the mix this week. Her gross motor and fine motor are delayed by about 4 months...although she just sat up for the first time alone, I mean I sat her up and she didn't fall over right away and she just bore weight on her legs for the first time today...all things that the doc didn't think she would do until well after her first birthday. Her "speech" is delayed too..she just meows (that's what it sounds like) she doesn't say mama or dada or anything like that. She is being tested for Fragile X specifically. Her hearing is not even 75% and we're having her eyes tested next month.
She currently has on OT and ST come to our house from the feeding team at the local CCAC to help with feeding issues and aversions. She can't eat without gagging and throwing up and she has a VERY limited diet.
She is on the waitlist (8-12months) for physical OT.
She will be going to the Ped GI hopefully in the next 6 months (wait list again) about 2 hours away.

THat's all I can think of right now....any questions, feel free to PM or message me otherwise.
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Old 02-05-2008, 12:56 PM   #18
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Re: Intoducing my sn baby...and yours!

okay update; Daniel isn't tolerating the brocolli anymore; now we are trying green beans and peaches; please pray that we can put these two on the okay list.
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Old 02-05-2008, 01:07 PM   #19
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Re: Intoducing my sn baby...and yours!

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okay update; Daniel isn't tolerating the brocolli anymore; now we are trying green beans and peaches; please pray that we can put these two on the okay list.
Okay, refresh my memory...does Daniel have GERD or just tummy problems? Syd (GERD) could NOT tolerate green beans, but she likes peaches occasionally, and she usually never gets sick from them.
Good luck..let us know how it goes.
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Old 02-05-2008, 01:43 PM   #20
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Re: Intoducing my sn baby...and yours!

Here's my rundown

ODS (8yo) is un-dx ADHD (going for more testing in June - yay health care system!) and SPD. His has the worst issues with food (and he's very tiny - 50lbs and 51" tall and he'll be 9 in May) and cannot tolerate anything "smushy" in his words. Pasta, hamburger, beans, cooked veggies, oatmeal, etc will cause him to gag and vomit right at the table (YUCK!). Fortunately, he loves eggs (go figure) and peanut butter, so the protein intake is okay. And he will eat RAW veggies and fruits until the come out of his ears. His carb intake is our biggest issue, so he has Carnation Instant breakfasts every morning WITH his breakfast (hates Boost, Ensure, Pediasure, Slimfast liqud - and I've tried them, they are pretty gross). For the ADHD, he shows almost all symptoms, and he is seriously the only child I've ever met that can fall out of his chair just eating dinner!

AS (7yo) has been dx with ODD and ARND (lesser form of FAS), as well as a mild (haha) attachment disorder. It's not severe enough to be considered RAD, but man oh man is he ever vicious when he gets on a roll.... His AD is fairly well-controlled. He's made much progress with various therapists and workshops (for dh and I). He does try to triangulate (divide and conquer) a lot, but between his teachers, dh and I, we're pretty good at stopping it before it starts. He does like to aggrivate his brothers, but I still attribute that mostly to age and being the middle child.

Once we received the dx of ODD and ARND, it became more manageable on OUR end - he wasn't this mean little imp trying to destroy our family; he really, seriously couldn't help the way he was behaving. He is hardwired that way. As frustrating as it is to tell him to do the same thing 73 times in a row - his short term memory is in the 2nd percentile and he really doesn't remember that I told him yesterday that jumping from the dining room table is NOT okay! His ARND has caused some neurological impairments, but nothing that we haven't been able to work through so far.

School is starting to become more difficult for him (2nd grade - starting with less concrete problems now), but he has tutoring in place and it's helping immensely. He is reading at a level about 6-8 months ahead of his peers, and exactly a year ago (when starting Kumon) he could not read at ALL! His teacher jokes that she has no more reading materials in the classroom for him and has to borrow them from the 3rd grade teacher across the hall!

The ODD is the hardest issue for myself, as I am a bit stubborn and OCD and like to have things running "just so", kwim? Dh is so laid-back, AS couldn't ruffle his feathers even if he spit in his face (which he's done to me a few times). He has a serious lack of respect for women (vicious domestic violence in the biological home), but it only comes off towards me. I try to remember that he acts out to ME because he feels safe in doing so, and knows he's not going to get the **** kicked out of him by being a brat.

He has been with us since he was just 3 (he'll be 8 in July). He's totally not the same child that came to us in '03, and had they asked us if we'd adopt him back THEN, we'd have laughed hysterically and packed his bags before we hung up the phone! Personally I think that's why his case took so long with CPS -- by the time he was legally free for adoption, he'd been with us over half his life and there was NO way we were letting go of "our" boy!

So far, DS3 is as normal as we would expect. He shows signs of ADHD, but I think he's just "busy". Some have told us that they think he may have Aspergers (AS' therapist), but eh.... we'll deal with it as it comes. It can't be worse than we've dealt with so far.

Sorry this came out so long - I just don't usually have anyone to "talk" to about my kids. The parents of all the "normal" kids just look at me like I'm crazy to take this on and not bat an eyelash at it..... or they look at me with pity, and THAT is sooooo not what we need. There's nothing WRONG with us!!

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