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Old 04-10-2007, 02:03 PM   #1
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"special needs" parents?

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

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Old 04-10-2007, 02:17 PM   #2
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Re: "special needs" parents?

My user name (togg_mama) means mama of a trophy of God's grace.

My first daughter (who is now in Heaven) was born with a congentital heart problem and had surgery when she was 13 days old. She was in and out of the hospital for her eight months of life.

I loved Rebecca so much and would pounce on anyone who dared tell me she was less than perfect. When she died, part of me died too. God was gracious to heal my heart and has given me another little girl. I do long for Heaven one day though so I can see Rebecca again.
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Old 04-10-2007, 02:20 PM   #3
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Re: "special needs" parents?

My dd has downs syndrome, we didn't find out until after she was born and had some tests done. she was lucky to have no other major health problems at all , she was born with a mild heart murmer, which is in the center of the top two chambers, she had a small hole, the dr said it should close up in a year, she goes to get that checked in a couple of weeks already!
When she turned 16 months old, she was dx with AML which is leukemia, that was a long and scary journey, she has now been in remission since January of this year and hopefully will stay there for the whole rest fo her very long and healthy life!
we have her in early child intervention and she has leanred so much and is even a signing baby, she is very smart and a very fast learner, her downs is a mild case so i think it works in her favor, she likes to get into everything she can and is a little trouble maker with her brother..lol
we love her so much and i wouldnt change anything at all about her, except maybe her getting leukemia, i wouldve loved to prevent that if it were possible, but thinking ahead, i think all will be good from here on foward

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Old 04-10-2007, 02:32 PM   #4
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Re: "special needs" parents?

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Originally Posted by Sweet_Fantasy_Fox View Post
When she turned 16 months old, she was dx with AML which is leukemia, that was a long and scary journey, she has now been in remission since January of this year and hopefully will stay there for the whole rest fo her very long and healthy life!:
Wow, that seems so unfair. So much to handle! I wish her (and you) the best.

My babe was supposed to be special needs but we aren't sure yet. She was brain damaged at birth and expected to have CP but doesn't. We're not sure about the mental stuff yet. She might have some problems. She's 17 months and just learned to walk. Doesn't talk at all. She used to say duckie and quack quack but we lost them. She has a CAT scan coming up....really nervous about it. She's in early intervention. We love her more than anything.

Maggie
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Old 04-10-2007, 02:48 PM   #5
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Re: "special needs" parents?

mamas

Our first was born with a congenital heart defect and had her first open heart surgery at 9 days old. She had a second open heart surgery at 2 1/2 years because of complications from the first. She seems to be doing better now since the second surgery - although she now has a mitral valve leak probably from the trauma of surgery. We see our pediatric cardiologist in July and I will feel better about her health after we see him!
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Old 04-10-2007, 07:09 PM   #6
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Re: "special needs" parents?

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Originally Posted by maggie_may View Post
Wow, that seems so unfair. So much to handle! I wish her (and you) the best.

My babe was supposed to be special needs but we aren't sure yet. She was brain damaged at birth and expected to have CP but doesn't. We're not sure about the mental stuff yet. She might have some problems. She's 17 months and just learned to walk. Doesn't talk at all. She used to say duckie and quack quack but we lost them. She has a CAT scan coming up....really nervous about it. She's in early intervention. We love her more than anything.

Maggie
We were told our ds would have CP, and he doesn't. Good luck w/ the CAT scan. FWIW I don't think it is very unusual for a baby not to walk at 17 months or not to really talk, especially if she is able to babble. Young brains can recover quickly and they learn how to form new pathways. I'll post my story about my ds in the next thread, but wanted to say mama.
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Old 04-10-2007, 07:14 PM   #7
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Re: "special needs" parents?

oh mamas
david just has PDD (speech delay) nothing as major as you all have had to endure. oops sorry wrong person, Nicole good luck with the CAT scan!!!
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Old 04-10-2007, 07:24 PM   #8
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Re: "special needs" parents?

Thank you Maggie
goodluck with the Cat scan, your lo will be in my thoughts and prayers that all goes smoothly
Nicole, goodluck to you too mama, your baby also willbe in my thoughts and prayers
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Old 04-10-2007, 07:24 PM   #9
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Re: "special needs" parents?

My oldest ds was born 3 months early. As a result of the prematurity he had a severe brain bleed and consequnetly developed hydrocephalus (his brain doesn't absorb spinal fluid). He has had 9 surgeries to help control it. Currently he has a cyst growing in part of his brain that they are keeping an eye on. They think the original bleed contributed to the formation of the cyst and if gets bigger or starts causing problems he'll need yet another surgery. He also has had a few other preemie related surgeries, including eye surgery. He also still has a heart murmer they are tracking.

Because of his bleed doctors told us he would likely have CP or be mentally impaired so I spent most of his early years worrying. He is turning 4 on friday and he is doing awesome. He does struggle more than most kids with his small motor movements, for instance he has trouble putting together puzzles (he can do board puzzles, but not say a 10 peice puzzle) and writing and opening jars, zippers, bottons, etc. But he is figuring it out.

He talks up a storm, tells awesome knock-knock jokes and is keeping up w/ his peers in preschool. He now can count to 20 (forward and backward) and he knows his alphabet and is starting to recognize letters. I think things will be a bit harder for him, but totally doable. He has been so brave through all his surgeries and I'm so proud of him. He just melts my heart.

Ohh, he also had torticollis and it was corrected w/ PT.

Here is a cute pic of my soon to be 4 year-old!
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Old 04-10-2007, 07:29 PM   #10
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Re: "special needs" parents?

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Originally Posted by maggie_may View Post
She used to say duckie and quack quack but we lost them.
My DD (who has no health issues) used to say words, and once she got the hang of them she would stop saying them totally. She's almost 2 1/2 now so that doesn't happen so much, but when she was just starting to really speak words she did that.
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