Heather's Web Page

Welcome to Heather's web page. It was created to help keep everyone up to date on Heather's progress.
Heather was born 11 weeks early, weighing under three pounds. We then spent a year dealing with neurological, GI, and developmental issues that seemed related to prematurity, except Heather never grew out of them. She was diagnosed with mitochondrial myopathy when she was 18 months old. Heather has a J tube for feeding, a G tube for venting, and a Hickman for TPN, medication, and hydration. She also has seizures, dystonia, dysautonomia, renal tubular acidosis, neurogenic bladder, an unspecified amino acid metabolic disorder, severe GI dysmotility, asthma, liver involvement, and blood sugar instability. She is also legally blind. Heather is a bright, happy child who loves to "talk" with sign language, walk with her walker, and play with her brother and sister. Heather loves Elmo, music, and babies. Just after Heather's second birthday, she suffered a severe regression and lost all her developmental skills. For the next year, she struggled with repeated illnesses and further progression of her disease. Heather went to Heaven on September 16, 2005, a week before her third birthday. We love you and miss you Heather!

Journal

Monday, June 22, 2009 9:47 PM CDT

Good evening! I do not like this new way of signing in to our Caringbridge sites. Too much work. Ughh!

Anyways, we've been keeping a secret and we can mention it now. For the past several months we have been waiting to hear if we won the Extreme Makeover: Home Edition show. Well, yesterday it was announced but we did not win. We have mixed emotions on how ABC exec's picked the family and the whole process on getting on the show. It's a touchy subject and we'll leave it at that.

On the flip side, we have been blessed by the amount of community support and it has been a humbling experience to say the least. It was an honor to be nominated for the show and to be one of five families to be considered for the show. Thank you to all who supported us through out this process.

The kids last day of school is tomorrow. It will be a half of day. Then Heidi has a doctors appointment in Springfield. On Wednesday we have a "Silent Pizza" at a local community college. This is for all people who are deaf in the deaf studies dept. and surrounding community who deal with deaf people. As the name suggests, the gathering is silent so you are "forced" to sign, no talking. Wednesday Katie has her dress rehearsal and Thursday and Friday are her Dance recitals. Heidi has an appointment on Friday in Boston. She sees neurology that day.

I am getting an insulin pump. In fact, it came in the mail today. I don't start poking myself with needles until September but I can play with the pump to see how it works.

We will hopefully be starting our own home modification very soon. We were waiting to hear if we won Extreme Makeover or not. We will be getting a new bedroom and a handicapped accessible bathroom out of the deal. We have the potential of possibly doing more but we'll have to wait and see.

Other than that, getting ready for girl scout camp for Katie and Nick is hopefully going to a local day camp for a week. He needs to get out of the house.

I hope everyone has an enjoyable week. I've joined Facebook so if anyone wants to look me up I'm there. Heidi is on their too. Have a great week.

As always, keep our friends in your prayers. Some are in the hospital and some are trying to get their bodies to work properly. Mito is a horrible disease. Take care!

Paul

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E-mail Author: mom2colemankidz3@aol.com

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.