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Old 04-10-2007, 10:27 PM   #21
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Re: "special needs" parents?

Kearnan is my super special man. He had extreme GERD and feeding issues at birth. He has been very low weight and FTT on and off since infancy. He has been managing to recuperate slowly but at 5.5yrs he only weighs 35lbs, his baby brother is 16months and 28ish pounds. He has sensory integration dysfunction that was worsened by the braindamage he recieved at 18 months caused by an encephalapathic reaction to his MMR vaccine. He is diagnosed with PDD NOS, a speech delay, and SPD. He still has severe feeding issues and a very limited diet along with skin problems. He just finally potty trained a couple of months ago. He is such a blessing. He has been doing soooooo well with biomedical intervention and intensive therapies. He is hardly the same child as just 6 months ago. He is funny and outgoing and a real ham. Just a joy. But he is also prone to violent outbursts and easily becomes overstimulated. He can have wild mood swings. We spend alot of time with Dr's and therapists but it is worth it to see the results he is getting. He's an amazing little fighter. He is even starting to fill out a little bit these days. He no longer looks like a starving child.

Tharen is pretty normal. Just high needs. He's very intense and in to everything. We always joke that he has to be so intense to get any attention at all. He was very laid back as a young baby but I think he realized that to get the attention he would have to be heard in a big way. And boy is he. He was born with tortocollis because of his position in the womb (posterior and face presenting, talk about hard to push out). He has some postitional plagiocephally. He was treated starting at 2 months by a chiropractor and recovered quite well. We thought he would wind up with a helmet (we discussed it at 9 months with his DR) but by 12 months his head had rounded back out. He still has a bit of a funny spot, but it isn't very noticeable these days.

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Old 04-10-2007, 10:36 PM   #22
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Re: "special needs" parents?

She has extrem GERD that was causing aspiration and her apnea episodes(average episodes 110 per hour on the last testing before her surgery) and had a fundoplacation nissen wrap done with a G-Button placement. The tube will be in for a year on March 24, 2007. Her esphogas is deformed and has pockets throughout which may possiably cause problems later on if something gets trapped in there, the surgen is on the up and up about



That is our son. He has has his G button for 5 almost 6 years. He had a Thal fundo though. I started to ask you when your shop first opened why you named it that and did you know what it meant in the medical world.Guess you did
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Old 04-10-2007, 10:55 PM   #23
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Originally Posted by snangel View Post
I see that there is a Autism thread. Thought I might see if there is other SN mommas (or daddas) around here.
I'll go first
My youngest son Martin was born with a chromosone deletion. He was born with no ears, is profoundly deaf, has epilepsy, scoliosis, torticolisis, low muscle tone, abnormal upper jaw, multiple joint anomalies, tongue tie, upper lip tie, GERD, High curve bowed legs, high lactic acid levels. We have a kidney ultrasound coming up as his urine output has slowed, and this is a signal to kidney problems (we were told to expect this, as the ears and kidneys have direct relation to each other.)So thats my SN baby in a nut shell. May I say though that he is the love of my life, and has brought our family closer together then ever before. I wouldn't trade him for the world. He is a true and absolute miracle. It has been a blessing to have him in our lives.
Now its your turn
I'll post my story in a sec but wanted to know if you are signing with your little one? If not, you must check out Signing Time. They are awesome american sign language dvds that kids and adults just love. Hey they are even now airing some shows on public television, you should check your local listing on their site, they might also be available to check out at your public library too.

Our family just loves learning ASL with Rachel,Alex and Leah. Just incase my links don't work here is their site www.signingtime.com

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Old 04-10-2007, 11:10 PM   #24
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Re: "special needs" parents?

Yes we are signing we have some of the signing time vids for the kids, but we are also getting sign lessons 1x a week. We now know probably 200+ signs, and my babe understands about 20 of them. Thankfully we are in Canada so it is all paid for. i also forgot to mention that my little man wears a baha hearing aid. He was fitted with it when he was 4 months old. Right now it sits on a soft band (kinda like a headband) with the aid his hearing is moderate sloping to severe loss (on the one side) and profound on the other. He will always need sign assisted communication but with the aid he should do ok out in the "real world" when he is much older.
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Old 04-10-2007, 11:10 PM   #25
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Re: "special needs" parents?

My special one is 3.5 yrs old has always had developmental delays but it wasn't until August of 2006 we got a dx of mild CP (which has affected speech and sensory and some motor) and absence seizures. Intervention with speech,OT and now PT has been key to his success. He has made huge progress with therapy. Besides the often unintelligable speech most people don't even see he has a disability...which is good but can also be bad too because I think there are some people who think I am making it up because he looks so "normal"....really I saw the MRI and the damage to his brain which we believe happened during birth when he was basically being strangled by his cord.

My son has had a ton of GI issues (GERD, severe/chronic constipation) and we are now suspecting he may be Celiac. Meaning he can not process gluten/wheat, so he's on his 3rd week of being gluten/wheat free and seems to be doing well.

One thing that is hard for me is the sensory stuff...my son is extremely tactile deffensive....it is often hard to deal with this around others.
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Old 04-10-2007, 11:14 PM   #26
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Re: "special needs" parents?

that's awesome!!! We too had some hearing loss issues for quite some time but we think it has finally been corrected with his 2nd set of PE tubes in Feb this year. about 2 yrs ago my son was dx with mild hearing loss but I have no doubt he would pass it now.

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Yes we are signing we have some of the signing time vids for the kids, but we are also getting sign lessons 1x a week. We now know probably 200+ signs, and my babe understands about 20 of them. Thankfully we are in Canada so it is all paid for. i also forgot to mention that my little man wears a baha hearing aid. He was fitted with it when he was 4 months old. Right now it sits on a soft band (kinda like a headband) with the aid his hearing is moderate sloping to severe loss (on the one side) and profound on the other. He will always need sign assisted communication but with the aid he should do ok out in the "real world" when he is much older.
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Old 04-11-2007, 02:07 AM   #27
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Re: "special needs" parents?

Holy cow, mamas! Some of you have quite a bit on your plates! Your LOs are so lucky to have found people who had the strength to work so hard to help them overcome their challenges.
While I've been lucky enough to have a perfectly healthy DD *knock, knock* I am a teacher for Special Needs Deaf children--they're all Deaf and then either autistic, emotionally disturbed, learning disabled, visually impaired, mentally retarded, other health impaired, an interesting combination of many of the above, or have a rare genetic syndrome.
I chose to specialize w/ SN kids figuring if I learned to work w/ the most challenging, the 'regular' Deaf kids would be a breeze. Isn't THAT the truth. Suprising, tho I fell in love w/ the SN kids and never wanted to move on to that 'regular' classroom.
I have just enough patience for my students and then to come home to DD--sadly I'm all tapped out when DH gets home. Heaven help him if I have to repeat myself more than twice to him
Every year I'm introduced to 5 new kids--all w/ disabilities I've never experienced before and have to research the heck out of them. I'm here if I can help any of you. I have access to all kinds of people from psychologists to audiologists, physical therapists to occupational therapists. If you're looking for a second opinion or anything, feel free to ask.
I'm most versed in all things hearing-related (have degrees in audiology and speech pathology as well) and have worked w/ hearing aides, Baha aides, cochlear implants, all methods of sign language, etc.
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Old 04-11-2007, 09:12 AM   #28
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Re: "special needs" parents?

My 5 yr old has hydrocephalus, along with low muscle tone. He was born with it but wasn't diagnosed till he was a year old(they believe it was caused by a blood clot that formed around the time he was born) He's had a lot of delays but is doing great now, though the low muscle tone has caused issues. We're currently getting him tested to find out what's causing his stomach issues, he keeps throwing up and complaining of stomach pain but nobody can find anything wrong.

My youngest will be a year here shortly, his ped wanted him checked for hydrocephalus as well at his 9m because his head was larger than it should be for his height/weight(according to them) Well the Ct showed he didn't have hydro, but that he did have some other issues, and an MRI showed less brain activity on that side. So we see a neurologist in about a week and a half to find out what's going on with that. He doesn't have any delays at all so far.
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Old 04-11-2007, 09:21 AM   #29
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Re: "special needs" parents?

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Originally Posted by beenwaitingalongtime View Post
I am a teacher for Special Needs Deaf children
Kudos to all the special needs workers out there. We love our kids cause they're our fantastic kids but you guys love'em cause you're generous, patient and kind people. Ella loves all her therapists. Therapy days are her favourite, new grown ups to play with.
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Old 04-11-2007, 05:41 PM   #30
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Smile Re: "special needs" parents?

Parker was born 6 weeks early with chronic lung disease, two holes in his heart, a tethered spinal cord, and severe pulmonary hypertension due to the lung disease.

On the second day of his life they discovered a severe bowel abnormality that required him to be life flighted to a children's hospital for surgery to create an ostomy.

He had surgery to de-tether his spinal cord when he was 3 months old.

Parker had his tonsils and adenoids removed when he was 6 months old as his adenoids were blocking his airway over 90%. Parker almost died from complications from this surgery. He was in the hospital for over 2 weeks.

In October he had surgery to create sinus passages as he had none.

Parker has severely abnormal sleep apnea. He wears a cpap at night.

Parker requires oxygen 24/7.

Parker has great trouble gaining weight and weighs only 18 pounds at 2.5 years old. He isn't crawling or walking.....he does army crawl now though. But can roll everywhere and get in and out of a sitting position.

Parker is learning to sign. He loves to be read to and demands to be played with and loves to learn. We are totally homebound due to his very underdeveloped immune system.

Parker will need to have at least two more very invasive surgeries to repair the bowel issues and reverse his ostomy. We can't have this done until his heart is strong enough and his PH numbers have reversed themselves enough for him to survive the surgery.

And, yes, our insurance totally sucks, but don't get me started on that. ugh!

Parker was also born with an extra chromosome on his 21st pair better known as Down syndrome. But we really couldn't care less about that. He is nothing short of a total joy and we give thanks for him each and every day.
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