Breanna’s cag is 80+. We are waiting for the final number. Her main symptom is muscle weakness especially in her ankle. Both feet are turning inwards too. This scares me because she needs good ankles to walk. She struggles with balance and trips often and falls sometimes. Her speech is already a little hard to understand and she is gagging on food sometimes. Her eyes flutter in a weird way and even got stuck open twice. Her handwriting is becoming weak so it can be hard to read her writing. She can’t zipper zippers or button buttons. All her shorts and pants have to have elastic waist bands so she can get them off and on. She pretty much needs assistance with all her shirts. Lastly, she has bathroom issues often. She has accidents often but does not need a diaper yet.
We thought HD was dead in the family because her grandpas doctor said so. The dr told her grandpa, at age 60, of you aren’t showing symptoms by now then you don’t have it. No test was ever ran. When Breanna started showing signs I was sure it was HD but nobody would believe me since it suppose to be dead in the family. Even before she started showing symptoms I noticed my husband was not right but I couldn’t put my finger on it. Anyway, after 3 years of fighting with Drs, unnecessary testing and misdiagnoses she finally was tested. One reason the Drs wouldn’t test Bre is because her dad wasn’t ready to be tested. He finally had his results in July of this year with a cag of 45 and we found out Bre was positive August 23, 2016 with a cag of 80+. By the way, grandpa was tested a year ago and has a cag of 43.
I’m worried about everything concerning HD. I worry about having to tell her the next step of what will happen to her. I worry about her not being able to walk but most of all I worry so much for when the day comes that we can’t have conversations together.
She got a feeding g tube. Her lung deflated when it was put in but they put a chest tube in and fixed her up to go home. She got admitted several times again due to painful distended stomach. Dec 2017 She’s still strong and having a great Christmas.
Her favorite colors are purple and then blue. She loves all sports especially soccer and recreational swimming. She loves stuffed animals and barbies. She loves bomb fires and s’mores. She loves to squeeze whipped cream into her mouth. She loves to give and receive hugs and kisses. She makes people laugh because she is a little comedian. She loves church. Her smile is infectious and so is her happiness. She loves comfy clothes as well as really fancy close. The more daily the better. Her number one love are boys. In fact, I think they are the only reason she likes to go to school.
Due to JHD she had to quit the swim team because she is afraid to drown. She can’t play much at playgrounds and she generally has problems playing all sports. However, she never quits! She loves sports and she tries her hardest to do what other kids do.
Breanna’s pt is working on Bre getting a walker and a wheelchair. I thought I had a few more years before she go to this stage. Friday, BOOM! She can’t balance well or walk. Really! I hate you jhd! I hate you!
My daughter has to stop playing volleyball this week. She already had to stop being on the swim team. She couldn’t join basketball and now this!
Oh, and she has to do 1/2 days on Thursday and Fridays! Most kids would like this but not Bre. This disease has stolen my daughter as well as my son. He can’t handle her behavior. Speaking of behavior, it sucks! She talk back left and right. She’s mean to me and her brother now. Worse than before! I think she is giving up on herself. I told her to try fighting and she told me no. My heart is so broken.
Her legs totally hurt too and I can’t get her seen. I will probably have to take her to the er before we go to Disney and pray the dr will give her some pain meds. I hate this disease and what it is doing to my family!
January 2018- The last week in November she had the stomach flu, she was admitted to the hospital 3 different times in December. The worst one being a collapsed lung. The first day back from school she got a concussion and had to go to the ER. Then this all started going on this week with her. Poor thing. I hate JHD!