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Old 04-10-2007, 07:52 PM   #11
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Re: "special needs" parents?

I'll play even though you may not count me in
we do special needs foster care
here is a list of some of the things we have done since the first of Jan on 4 of the kids that we have adopted
2 surgeries (maybe 1 more)
1 new fake eye
dental work spacers, teeth pulled and getting braces all from resporator (sp) mouth
2 new sets of leg brace (one set of leg casts)
Iv antiboitcs for 6 weeks (plus Iv treatments every 21 days)
our 2 yr old got dx with athristis
problems with our feeding tube that was taken out so we had to start a dairy free diet on my 7y old (which is not working, so she may need surgery)
Hearing aids on the baby (we are learning to sign)
we have a power wheel chair try outs next week to find one we like

more therapy appoinments then I can count we have 14 different therapist at this time

the only thing we have not had YET is a trach (hope we get that one day)

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Old 04-10-2007, 08:04 PM   #12
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Re: "special needs" parents?

Quote:
Originally Posted by 5tinytreasures View Post
I'll play even though you may not count me in
we do special needs foster care
here is a list of some of the things we have done since the first of Jan on 4 of the kids that we have adopted
2 surgeries (maybe 1 more)
1 new fake eye
dental work spacers, teeth pulled and getting braces all from resporator (sp) mouth
2 new sets of leg brace (one set of leg casts)
Iv antiboitcs for 6 weeks (plus Iv treatments every 21 days)
our 2 yr old got dx with athristis
problems with our feeding tube that was taken out so we had to start a dairy free diet on my 7y old (which is not working, so she may need surgery)
Hearing aids on the baby (we are learning to sign)
we have a power wheel chair try outs next week to find one we like

more therapy appoinments then I can count we have 14 different therapist at this time

the only thing we have not had YET is a trach (hope we get that one day)
Of course we count you in!!!!!!!!!!!
Wow guys, It is always nice to know we arn't alone, I have gained all my strength from other momma's.
5tinytreasures.......we are learning to sign as well. It is quite the journey. Nice to meet you all.
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Old 04-10-2007, 08:04 PM   #13
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Re: "special needs" parents?

thats alot to go through mama
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Old 04-10-2007, 08:44 PM   #14
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Re: "special needs" parents?

I couldn't do it with out my great husband and my wonderful MIL
because of all the special needs kids grandma get paid by the state to be a full time aid
so the kids get the best of both worlds they get a full time grandma and I don't feel bad about living at the doctors all the time
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Old 04-10-2007, 08:47 PM   #15
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Re: "special needs" parents?

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Nicole, goodluck to you too mama, your baby also willbe in my thoughts and prayers
Thanks mama
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Old 04-10-2007, 08:58 PM   #16
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Re: "special needs" parents?

Well we were told by a local school place for kids with "special needs" that she is not but DD has Epilepsy, was diagnosed at 6 mns had her first seizure at 3 mns.

They also are looking into her having Autism I guess often the two go hand in hand.

She's 20 mns now and her seizures were starting to be controlled with a new med but we just started to have break through seizures.

I'm going to try to push for her to be on the ketogenic diet.

She is also allergic to a host of things including having anaphylaxis to Chloral Hydrate which is the sedative they give kids when the get a CT scan.

I hate to say it but my DD's CT Scan was the most nightmarish experience for DH & I we both to this day REFUSE to have her have another one, unless it's at a Children's Hospital and even then we are leery.

DD stopped breathing 3 times the night of her scan, that was the allergy to the Chloral Hydrate, she also is allergic to the Contrast dye they put in you for the test.

DD is a complete joy though and is an absolute blessing.

Anyway for the upcoming CT Scan Mama!
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Old 04-10-2007, 09:42 PM   #17
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Re: "special needs" parents?

DD1 has had brain surgery for a congential brain defect.She still takes lots of brain meds but it doing well.

DS1- no problems -just a sassy mouth

DS2-feeding tube, eating disorder,lack of O2 during pregnancy and birth so has some mental issues.Needs constant assistance on things. Severe asthma etc

DS2(our adopted miracle)-damaged left kidney,muscular dystrophy,low back muscle tone,doesn't talk etc
She did't get over drug withdrawels until 6 months old etc and was a preemie.

I LOVE SPECAIL NEEDS MOMMIES
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Old 04-10-2007, 09:57 PM   #18
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Re: "special needs" parents?

DD was born 6 week premature. In the NICU she had problems with low heart rates, apnea, suck - swallow - breath, etc.... She is extremly far sighted from what the docs have told us and at the next appt. they are talking glasses (related to prematurity).

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 it. She has a lump under her left arm on the side of her breast that will need to be removed, we are waiting 3 months to see if it may possiably go away by itself.

She has SID (Sensory Intergation Dysfunction) and is in Early Childhood Intervention for that and developmental delays. She just started walking (a few weeks ago at 17 months) and they are looking into Speech Thearpy now. She can say Mama, Dada and No (shaking her head as well). She has been diag. as FTT (Failure to Thrive) and is allergic to Dairy, Soy, Wheat/Gluten, Egg Whites and Latex (as far as we know).

She has 7 doctors (cardiologist, pulmoligist, GI, optimoligist, metobolic genetic specilist, pedi surgen and her regular pedi which is a neo-natle specilist and was her doctor in the NICU) and 4 and about to be 5 thearpist (Developmental Specilist, Physical Thearpist, Nutricinst, Occupational Thearpist and about to add a Speech Thearpist).

I know I am leaving something out - but she is a joy in our life and I wouldn't trade any of it with anyone!!!!

God gave us these special babies for a reason, he knew that they would be well taken care of and very loved!!!!
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Old 04-10-2007, 09:57 PM   #19
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Re: "special needs" parents?

My 8 yr old has PDD-not otherwise specified, so somewhere on the autism spectrum. I'm leaning towards Asberger's, but we haven't got it narrowed down anymore than that yet. She also has ADHD. She had torticollis & nerve palsy to one side of her face that was corrected just from me doing stretches at every diaper change. My 8 mo. old also has torticollis, but more severe, & plagiocephally. She is getting a helmet soon, & has to start more intensive physical therapy on Thu. If it doesn't improve within a few mo, she'll need surgery. Not much to deal w/ compared to some of you mamas. You are all very strong for your babies.
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Old 04-10-2007, 10:08 PM   #20
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Re: "special needs" parents?

MY 3 year old DD has hearing problems, has had tubes in her ears 4 times, and has a speech delay. She is also having troubles gaining weight. At 3 years old she is only 21 pounds.. her little brother is now weighing the same as her! She wears fuzzi bunz meds at night (she is potty trainned but has accidents at night).. and wears the meds on the smallest snaps! she is a bean!

My DS has Ezcema REALLY bad and we are yet to find something that works on his skin. He also has a breathing problem and is thought to have Asthma
and a problem where he quits breathing in his sleep

Me myself, I am a Skin Cancer surrivivor (remission one year now)
and I am hard of hearing with a learning disability


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