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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
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#1
01-20-2005, 01:11 AM
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 Hi! My name is Misty and I have a 3 year old miracle. Her name is Holly. She was born with Escobar Syndrome with diaphramtic hernia and eventration(she only has a left lung.) She wasn't expected to ever come home. She loves to prove the doctors wrong. Â*Currently we are having speech problems. Her vocal folds aren't working and her nasal passage doesn't close like it is suppose to, and the roof of her mouth is very high. The syndrome she has effects bone and muscle. So she is having problems getting her tongue where it needs to go to make certain sounds. We are going to Ohio to see Dr Cotton in Feb. Have any of you seen him? Or have any of you had speech delays and what did you as a parent do to help. Â*Thanks
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Miracles still happen! Holly Grace 5-18-2001, Escobar Syndrome(webbing, muscle contracted, scolosis, club feet, short stature, off set ears(hearing loss), tethercord, fused joints) Diaphramtic herni/enventration, has only left lung, trach, g-tube, 8 surgeries and counting. 
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#2
01-20-2005, 05:52 AM
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Hi Misty,
Welcome to the boards! You will find there are a lot of us here that have seen Dr Cotton. Many have him as their primary ENT, while some of us have seen him on a consulting basis. My daughter has not suffered from anything like yours, so I can't speak to the other issues. Welcome anyway! Godspeed Clare
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Mother to 3 Â*Rebekah 12. Patricia 9 and Jacob 7.Â*Patricia--diagnosed at age 4 with VCP/Subglottic Stenosis. Â*Has had T/A, LTP(8/10/01),Trach(2/25/02), 2 trach revisions arytnoid work,vocal chord lateralization(8/10/04) and countless broncs in the last 4 years. Decannulated!! 9/30/05 Â*Patient at CHOP
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#3
01-20-2005, 08:42 AM
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Hi Misty! Welcome to the group. I am glad your little one is also able to prove doctors wrong - many kids here do the same. They are all miracles.
My son has a neuromuscular disease and has the same issue with tongue placement. Unfortunately, because of our state's wonderful  EI program, he has received little speech therapy. On the other hand, he now starting to make "la" and "na" sounds, which is a great obstacle as far as tongue placement goes. Like Clare said, many kids here see Dr. Cotton. I have no experience with him, but if my son had issues that he could resolve, I would definitely try to see him. He is the man to see. I hope he can help Holly. Take care, Amanda
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Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube. 
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#4
01-20-2005, 02:47 PM
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Welcome. Our issues are different than ours, but I did want to welcome you. We have not seen Dr. Cotton, but he seems to be the best one from what everyone on here says. Please keep us posted on how your little one is doing.
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Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007.  B & C are surviving triplets. Brooke survived for 1 month.
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#5
01-21-2005, 02:00 AM
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Welcome to the greatest board in the world. I am an adoptive mom to 3 medically fragile, special needs, miracles.
We also foster 2 other medically fagile little ones. Our Miracles have many and various issues. Feeding tubes, Trach, legally blind, oral and sensory issues, almost deaf, Hydrocephalus, Microcephaly, C.P., Oxygen dependent, wheel chair dependent, etc. They told us Kimberly would probably not live more than a few months and she celebrated her 7th birthday this past Dec. 5th. She has proven that miracles still happen several times. 2 of ours were botn at 23 weeks weighing 21 and 22 ounces. Please feel free to contact me at any time. I am here for you as are all the other wonderful people on this board. God Bless your for loving and caring for one of HIS special Angels. Love to all, Judy and the 5 very special Angels 
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Judy, Ken and *4*special Angels (Shawnee 13, CP, develop., men. delayed, wheel chair.*Kimberly, 11, CP, Hydro.,02, Microcep, leg. blind, G-tube, develop/ ment. delayed, *Kenya 13, Trach, CP, 02, leg. bld., hear. impair,J tube. 2 Angels in Heaven: Kiley and Colton 
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#6
01-21-2005, 08:57 AM
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Welcome, Misty! You have found a fantastic group of people! You will be at home here!
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Melisande H. Mother to The Preeminent Grand Poohba Donovan (5/27/03), still some "resolving" apnea, on the autism spectrum and some cerebellar malformations. Trached since he was 6 weeks old. Recently DECANNULATED 4/16/09!! Big brother to Conrad! 
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