What is your child's (children's) special need(s)?

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Permalink Reply by Samantha on January 6, 2009 at 5:45am

I am so sorry little Hannah is sick right now. I was reading your 1/6/09 post and well even though our kiddos have different diagnosis we do share laryngomalacia in common. Cedric gets sick and it directly goes into croup. It only seems to be a real problem in the wetter months. This year we did start a wee bit early in November. They told us that as he got taller he might "grow out" of it as his neck lengthens and he gets taller. But Angels don't grow very fast. My love to you and your beautiful family may the answers you seek be provided this year. Blessings

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Permalink Reply by Angie Gouchenour on January 6, 2009 at 12:32pm

My daughter has ADHD, nothing compared to what you are going through. I looked at your blog and joined your cause on facebook. I wish you the best of blessings for your little angel.

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Permalink Reply by racquelmorris on January 7, 2009 at 10:53am

Carrie has updated her blog. See the new posting here http://littlemisshannah.com/2009/01/we-have-a-diagnosis/

Carrie, I am thinking about you and your beautiful daughter. I have no idea what Gaucher’s disease is but you all are in my thoughts.

To answer your question I have two boys. Caleb is autistic and Egan is aspergers. I always hate using "is" but I don't know how else to word it. They are extremely bright boys and I do not consider their diagnosis as a disability. Their world the way they see it is amazing and I love being able to get into it. I do homeschool as they have too many sensory issues for regular school.

Speaking of which I need to start a new lesson for them. I look forward to reading your blog and learning more about Hannah's progress.

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Permalink Reply by Brooke Hukill on January 8, 2009 at 10:41am

Carrie, you and your family are in our prayers! Please keep us posted!

Oh, and my son was born with Spina Bifida you can see pics of him in our newest adventure. I entered an online contest, something I have never done before and made a video which is on my blog. You can see it at www.BrookesKitchen.wordpress.com He is restricted to a wheelchair but is very smart and full of life! We count each day as a blessing as I am sure you all are doing as well!

Good luck and God Bless! And PLEASE keep us posted on her diagnosis and progress.

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Permalink Reply by Sygnet Creations on January 8, 2009 at 6:38pm

Hi
I am extremely new (as in less then an hour and I came upon this group. I have four children 1Boy and 3 Girls. My oldest daughter is asthmatic and my youngest is IGFD (insulin-like growth factor deficiency) Neela, the baby, is a very little 2yd and is lacking the major growth factor in order to grow on her own. We have spent the last 2 years searching for help and have just now entered into the final step, treatment. We have the meds and will begin daily shots with in the month. I am excited to meet all of you and share in your stories and trials.

Amanda
http://sygnetcreations.blogspot.com

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Permalink Reply by Carrie on January 17, 2009 at 11:55pm

Thanks! I'm sorry it took so long to come back here to update everyone, but I'm glad someone did for me.

It is a relief to finally know what we are dealing with, and also that what we are dealing with is not with the lead diagnosis the doctors had was. At the very least we are given a much more time to work to find a treatment or cure for hannah than we would have been if it was what they thought.

Carrie
http://www.littlemisshannah.com

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Permalink Reply by Margaret Chaidez on February 28, 2009 at 5:58am

My son was born 3 years ago with a rare orthopedic condition called arthrogryposis multiplex congenita. It means multiple fixed limbs and for Owen, he was essentially pretzled at birth. They have above average intelligence, it is a physical handicap. It requires aggressive physical therapy and surgeries (O is supposed to have 18-30 by the time he is an adult).

While the diagnosis is different I think we all share some of the same challenges. I worry that my older two boys feel neglected, I worry about insurance, about mounting medical bills, etc. I would never change it for anything though. Owen has changed my life for the better and I am thankful every day.

You can see more on AMC at www.amcsupport.org and at my blog for the documentary I am producing: www.amcdocumentary.org.

If your daughter does have alzheimers, what does that mean? Is there anyway to reverse the process? When will you find out?

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Permalink Reply by B Washington on March 15, 2009 at 7:02pm

My son broke his eye glasses around November 2008. The optometrist sent us to a specialist due to the test results. After 7 doctors visits on 2/13/09, he was diagnosed with RP, a hereditary eye disease. It could cause total blindness. I was informed he had it since birth. My son is 15. He was shocked when he heard the news for a short time. I have watched him to be courages & strong. He is amazing.

Keep praying. I will keep your beautiful daughter in my prayers as well. I am glad to have found a wonderful group like this for reaching out and supporting one another. Best wishes for you and Hannah.

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Permalink Reply by Ann Marie Curling on March 25, 2009 at 10:36am

My oldest son (Big Boy or BB for short) is 13 and has Epilepsy and atypical Cystic Fibrosis, my oldest daughter (Big Girl or BG for short) is 12 and also has Epilepsy and atypical Cystic Fibrosis, she also has a functional mental disability due to severe seizures when she was younger, my youngest daughter (Little Girl or LG for short) is 9 and also has Epilepsy and Atypical Cystic Fibrosis, her CF is worse than any of them, and finally my youngest son (Little Boy, or LB for short) is six and has Epilepsy and SVT (or Supra Ventricular Tachycardia).

Sorry for the code, but I had a very bad situation occur where my children's privacy was breeched on the internet 4 yrs ago, and I've been very careful how I speak about them ever since.

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Permalink Reply by Michelle Todd on April 6, 2009 at 9:14am

Hi! My name is Michelle and I have 4 children (9,8,7, and 4) My children were adopted through the foster system almost 5 years ago. My 7 year old has receptive Aphasia and is clinically deaf. Receptive Aphasia is a condition caused (in his case) by a stroke. The part of his brain that comprehends oral language has been damaged. some more minor side effects are a faulty "working memory"(the part of the memory that you use while you are actually doing something), sequencing, and carrying history. Because of his hearing, he is also in speech therapy. Despite all of this, he is an incredibly happy, outgoing 7 year old boy. Although there are days that I am overwhelmed, I also am impressed by how he has overcome so much.

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Permalink Reply by photomom on May 23, 2009 at 5:51pm

HI Everyone,

My name is Maria and my baby is non verbal. She was given an early diagnosis of autistic but now is being evaluated for Angelman Syndrome. She is an amazing person and only two years old and has been through so much. She is also being tested for severe hearing loss since she does not respond to anything and failed all of her hearing tests. She has been in early intervention now for a while. Forums like this are so helpful for moms and dads that are going through this. Where ever this road takes us we at least we are not alone.

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Permalink Reply by Chaiteamom on June 9, 2009 at 8:47am

Hi everyone, I am new as well. My youngest son has verbal apraxia. He is four years old and up until a few months ago almost all of his language was totally unintelligible. He has been in Early Intervention since last fall and is making great progress compared to where he was. I sometimes feel sorry for myself because of this situation and how hard it can be for me, but he is now well aware of the fact that people can not understand him and I know it's sad for him. It's a difficult situation all around.

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