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!
Thursday, September 17, 2009 8:25 PM CDT
Read Journal History
Good evening! Ok, I know it has been several months since our last update and I'm sorry. Things have been very busy here and am excited to tell you about them.
Well, we were able to begin our addition on our house. It is looking quite nice now. We have a full basement and it will have a handicapped accessible bathroom and a bedroom. We will also have a ramp that will attach to our house by a 7'x8' platform. The walls are going to be antique white and we have recessed lights. In fact, Nicholas, our 11 year old son, is working on a journal/blog about the project. If you'd like to see our addition and the whole process of how we got to where we are now, go to this site. Go to: www.carepages.com/carepages/moobleandmitoandmore. Once there you need to do a quick password but after that you can look at his site and look at all the pictures of the addition. You can see his captions under the pictures too. They are funny. You can see what kind of brain Nick has when you read his captions and his journal entries. Nick you are doing a great job.
The kids are doing well so far in school. Nick is in 6th grade and Kaitlin is in 5th. They are both in the middle school in our local town. Our babies are growing up.
Speaking of babies, our precious Heather just had her 4 year anniversary for leaving this Earth. She would have been 7 years old this year. Heather was an inspiration to us all. She was also a teacher to her family, all the medical students, nurses, and doctors that had interaction with her. She proved that not all mitochondrial disease patients are the same and that their bodies definitely move to a different drummer. We miss you Petunia! We love you!
I started on an insulin pump about a week ago. So far so good. My numbers are getting better and I will be taking less insulin in the long run. I've been having issues with sticking myself with the auto injector so I've been a pin cushion the last few times changing over my site but other than that things have been a little easier. Work continues to be stressful and tiring. They cut our staff more and still expect us to get everything done.
Heidi is doing fairly well. We've been dealing with poor communication with her GI doctors in Boston and this has been frustrating. Heidi's been having more GI problems and she has been trying to address them. She has scheduled an appointment to visit a neurologist that specializes in autonomic dysfunction. She goes for testing on Tuesday. Heidi is taking a class at our local community college. She is taking ASL 3 (American Sign Language). She is doing very well with signing. I'm still slow and I know it frustrates her. I do need to practice more. Sorry hun!
Heidi is also starting up her own business. It is going to involve writing grants for individuals and non-profit agencies, being an advocate for families with a family with special needs. Her webpage is www.colemanconnect.com. It is the beginning of a webpage but it gives her goals and basic information about her business. She's very excited to get started. It sounds like she can get a lot of work she just needs to get the last odds and ends in place so she can be "official".
Well, that's it for now. Thank you for stopping by. Please conintinue to pray for our friends Malisa and Tim. God knows their needs and wants so please keep them in your prayers. Until next time, have a great week and check out Nick's webpage. He loves reading comments so if you leave one hopefully he'll read it. If it's funny he'll laugh and laugh and laugh. TTFN!
http://www.umdf.org United Mitochondrial Disease Foundation
http://www.mdausa.org Muscular Dystrophy Association