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

Sunday, September 21, 2008 8:10 PM CDT

Good evening!

I hope everyone had a nice weekend. It was a hectic one for us as we had Heidi's Motorcycle Ride to raise money for Mercury.

The motorcycle ride actually went well. Bethany, a friend from church, organized the ride and she was hoping for 50 riders. It actually only had 15 bikes and a total of 21-23 people. We had a silent auction and delicious food. We had hot dogs and hamburgers and various macaroni salads. They also had cookies and brownies and soda and water. We did raise $1,000 towards our portion for Mercury. We are close to be raising about $5,000 so far for Mercury and we just started the fundraising so we are doing pretty good. We will march forward and continue our fundraising endeavors so we can meet our $9,500.

Nick had a hard day yesterday. Katie and Nick were arguing over the computer. When Katie asked for help Nick would help her by doing it for her and Katie didn't want that. Heidi took Mercury out and I went out to help pick up the, um,#2. When we came back in, they continued to fight and Katie and Nick were throwing rocks inside the house. I told them that they could't play computer the rest of the night. Needless to say, Nick went bonkers and was screaming on the top of his lungs. He calmed down after about a half and hour. We need help when he has these "attacks"/tamtrums. Nick is on a wait list to see the local psychiatrist but we'll see if they can move him along.

Nick did say the funniest/cutest thing on Saturday though when he was arguing with Katie. One time when he was screaming he went up to us and said, "Once Katie was able to walk and talk she has been annoying me."! It was priceless to say the least. Nevertheless, we still didn't let him play the computer.

Well, that's it for now. I'll update again midweek. Heidi has an appointment on Tuesday and Nick has an eye doctor appointmetn on Tuesday. Nick also sees GI on Thursday so maybe I'll update on Thursday night. TTFN!

Paul

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