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Old 04-13-2007, 09:10 PM   #41
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Re: "special needs" parents?

but honestly she is so wonderful. she is beyond precious to me. I cannot imagine loving anything more. She has the most amazing smile and a wonderful sense of humor. Despite the crappy hand she was dealt, she loves life and looks forward to each day. She is my inspiration

I can so relate to what you are saying! Wouldn't trade Parker for the universe!


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Old 04-14-2007, 07:49 AM   #42
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Re: "special needs" parents?

Wow these last few days have been hard on us. Coming here to read all your guys posts have made me smile. Thank you guys for all the responses, its always nice to know that I dont have to be alone in this, it has made it easier to reach out to other parents.
CanaDiaN momma to BOYS!
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Old 04-16-2007, 10:21 AM   #43
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Re: "special needs" parents?

I have a son who was born a month premature. He is on oxygen 24/7 right now and is on a feeding tube as of the moment. They believe he is legally blind in both eyes.
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Old 04-16-2007, 12:52 PM   #44
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Re: "special needs" parents?

My DS was born with a brain malformation called Bilateral Perisylvian Polymicrogyria and a joint deformity called Arthrogryposis Multiplex Congenita. He has apraxia of speech, mild dysphagia, cognitive delays, hypotonia, clubbed feet, and hip dysplasia. He's had a bilateral hip abduction and a tenotomy (twice actually) and now wears long braces at night and AFOs during the day. He just recently learned how to crawl on all fours (he's been army crawling since 10mo) and he's now pulling up to a kneeling position all by himself. We just recently started gait training as well so he's been using a cute little baby-sized walker too.
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Old 04-16-2007, 03:08 PM   #45
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Re: "special needs" parents?

DD #2 has ADHD & ODD, possibly also SID/PDD. She was allergic to all dairy until last fall & is now able to manage small amounts with no problems. She has conjoined toes (just 2 on each foot) & was also born with an intestinal malrotation (they didnt loop correctly). It wasnt discovered until she was 3.5yrs & she had to have emergency surgery to correct the malrotation as well as remove her appendix which was on the wrong side of her body. It is NORMALLY found/caught within the first few months of life & the Drs told us she is very lucky that it didnt kill her before then.
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Old 04-16-2007, 05:02 PM   #46
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Re: "special needs" parents?

Originally Posted by sesa70 View Post
Well I think by now you all know about my princess Celeste

She has Canavan disease, a neurological degenerative white matter disorder that is fatal. Basically she is completely dependant. Non verbal, gtube since 18 months old, siezures, respiratory issues, No head/neck/trunk control so she is in a wheelchair.... on and on....

but honestly she is so wonderful. she is beyond precious to me. I cannot imagine loving anything more. She has the most amazing smile and a wonderful sense of humor. Despite the crappy hand she was dealt, she loves life and looks forward to each day. She is my inspiration

When we got her diagnosis all those years ago, when she was about 6 months old, the drs told us to love her while we had her.... it wouldnt be long. Here she is 7 years later and doing wonderfully! The hardest thing for me to think about is what I will do someday without her.... but I suppose I will figure that one out when I have no other choice.
Ohh mama. I knew about your dd, but didn't know the full story. I'm so sorry you have to go through this. I'm happy you get the time you will with your dd, but reading your story my tummy is just in lots of knots. I can't imagine being told that my child has a fatal disease. I'm so glad you have gotten the time with her.
Ali, Loving Wife to Bill and Mom to Keegan (7) and Brodin (3 1/2) and baby Finn!!!

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Old 04-16-2007, 10:35 PM   #47
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Re: "special needs" parents?

DS (1) 36 wker, 5 lb 12 oz, mild jaundice at birth-otherwise healthy..a hansom and healthy 7 y/o
DD (2) 34 wker, 5 lb 7 oz... severe jaundice at birth,and mild apnea/rds... needed bili lights ,an NG tube, and nasal canulla with just a whiff of 02 for about 10 days...went home and grew like a weed.. has a "functional" heart mur mur.. no biggie.. othwise completely healthy 5 y/o
DD (3) 28 wker, 2 lb 9 oz had RDS,pulmonary hypotension, bpd, jaundice, apnea, bradycardia, ROP stage 1, sepsis, and NEC - and GERD. was on the vent for 6 weeks, then weaned to CPAP ,then canulla-came home at 36.5 weeks at 4 lbs 11 oz and 17 inches. (so 8 weeks old) her GERD got worse and she had FTT and wheezing- an NG tube went back in at 4 mos, then an NJ tube went in a few weeks later.. I continued to pump for her. She was/is developmentally delayed (global delays) and began OT/ST at 5 months.She was diognosed with a dairy allergy , so I went on an elimination diet.At 12.5 mos she was weaned from tube feeds back to breastfeeding. at 18 months it was discovered that she had Subdural hygromas (external hydrocephalus).She stopped breastfeeding at 2 yrs 7 mos (one month after I delivered baby #4 )She continued with OT/ST until she was 3, then she started special needs preschool. She just turned 4 , and her current DX is gross motor/fine motor delays, subderal hygromas and FTT.othewise she is fine!
DD(4) born at 27 weeks; 1 lb 11 oz 12 in.. SGA, RDS,BPD, ROP 2, NEC, sepsis, PDA (closed by itself )apnea, bradycardia, FTT GERD, Dysphagia/micro aspiration, delayed gastric emptying, jaundice,ulcers, severe anemia (has had 11 blood transfusions),craniosynostosis,RAD.Osteopenia...Sh e stayed in the NICU for 85 days,, came home on Oxygen 5 days before her due date at 39 wks 2 days at 4 lbs 7 oz and 15 3/4 inches long. She came home on full breastfeeds and some reflux meds but the GERD got really bad and she was desating with her reflux episiodes and losing weight. She became tachycardic and listless and had to be re-admitted for respiratory failure (left lung colapsed ) and ventricula tacycardia,pulmonary edema,sepsis from aspiration pneumonia(from her GERD) w/ secondary stretococcal pneumonia. She had multiple organ failure and was on meds for her high blood pressure, surfactant, bronchiodilators,medications for her heart(?) antibiotics,diuretics, and was in a medically induced coma for approx 26 days on an oscillator (jet ventillator) and nitric oxide. We were told she had about 10% chance of survival.but being the tough cookie she was, she puled through- a battery of test done after she was discharged from PICU to med /surg unit revealed delayed gastric emptying/gerd/dysphagia/aspiration and Osteopenia (from prolonged TPN and diuretics)She was discharged again after 33 days, with an NJ tube on continous feeds-and I pumped for her.She was weaned off of home oxygen 2 weeks later. (at 6 mos old) She had the Nissen Fundoplication and had a GJ tube placed at 7 mos, then a G tube (Mic-Key button) at 8 mos. Her current DX at almost 18 mos is : FTT, oral aversion/SID, dairy allergy(on elimination diet, again!)global delays (at 5 mos for speech/fine motor and 9 mos for gross motor),BPD/RAD,craniosynostosis (trigonocephaly), DGE,dysphagia/aspiration, chronic constipation, and low muscle tone .She is breastfed (after 6 months NPO!) and fed mostly through her G-tube expressed breastmilk mixed with EleCare (to make it 27 cals)She is eating only a few things orally (stage 3 baby food ,1/3 of a jar a day) and she gets OT/ST every 2 weeks. She is not walking yet but she is crawling and sitting.She dosnt "talk" either, but she can string together a few vowel constinent combo's like "ba" and "da" and
":na" she is on some meds:Lactulose, albuteral,pulmicort,reglan,calcium glubionate,zantac, and iron.She is currently up to 17 lbs and 26 1/2 inches.

sorry to make this a novel....
Barbarann-:navy wife, momma to 3 ex-nurslings:Jakob 9,Lauren 7,Danielle 5 &
STILL nursing (& also Tube fed) my CD,micropreemie Kirsten 10/05;1lb 11 oz 12 in NOW 3 yrs & 25 lbs,34 in need BF help?*Medela Maven*
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Old 04-19-2007, 01:31 PM   #48
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Re: "special needs" parents?

wow what a great thread for support and to share what everyone has going on with their little ones. There are some mamas that have so much on their plates and are so strong for their babies All of us here are very special to be given such wonderful children to love!

My DS #1 was breech born by c-section severe jaundice and needed the billi lights and was discharged home with the machine. Feeding issues right away and some constipation started at 10 weeks old. He has had many blood infections and lots of mysterious abssesed infections in his mouth that they had to drain. He has a heart murmur, but it is "functional" He has Autism, speech delay, SID , and recently found out he has childhood onset bipolar. He has had tons of ear problems and has tubes.Oral motor problems, FTT and chronic/severe constipation and is still not potty trained, reflux, poor muscle tone and we are waiting on tests from his GI for malabsorbtion disorders. He has food allergies probably celiacs disease. He is the sweetest little boy and a pure joy in our lives. He makes everyone around him so happy!!!
DS#2 has mild developmental delays and asthma and ezema (did I spell that right)
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