Thursday, September 29, 2011

End of the week

Well this week was the best week Audrey's had health wise since June. I have to believe things are starting to stabilize now. Her only new thing is a milk allergy. This is pretty unfortunate as between her food allergies, dysphagia and being 2 year old, I have no idea what to feed her! Somehow it's the worst feeling as a mom to not be able to feed your baby. Her doctor wants to start a special formula which makes me sad. She's never had formula before. I thought we did so well with her as a newborn exclusively breastfeeding and now here she is 2 years old and they want to give her formula. I know it's not the end of the world it just makes me feel like we're going backwards.

Otherwise this week Jacob was sick with the flu. Poor little guy was quarantined to his bedroom for 2 days as we couldn't risk Audrey getting sick. He was a trooper though and really understood why he had to stay in his room. He's a great big brother! Lucky for him he's better in time for the annual Bike Rodeo with his boy scout troop this weekend. Looking forward to this weekend and hoping it will be uneventful...too bad it's going to be so warm, we are definitely ready for the cool fall weather!

Monday, September 26, 2011

A good day

Yesterday was a good day. The temperature is cooling down which is good news for Audrey. We we able to go outside for a short walk for the first time in over a month. She walked up the street and back with her oxygen in a little backpack. She was pretty exhausted the rest of the day but I think it was good for her.

We installed a new rail on the staircase which is her level. Now her physical therapist can work with her on the stairs with something for her to hold on to. We tried to get her to use it last night but she would rather crawl still...I guess we'll leave it up to the therapists.

Today being day is going as usual. Work is usually pretty busy, especially since I missed Thursday and Friday for Audrey's MD appointments, so it keeps my mind off everything else. Sometime I have a lot of guilt about working so much and putting her in daycare, but I know she likes to play with the other kids and I know I would be a complete mess if I didn't have this little escape. Maybe it's wrong for me to want the escape but I know I won't be any good for her if I can't keep myself together. I'm looking forward to this week. We don't have any doctor's appointments or tests or therapy! Hoping for a "normal" week...

Sunday, September 25, 2011

The first day

Here I go with my first blog. I'm hoping this will help me to discover my strength so I am able to be there for my daughter through whatever she may have to face. Since her diagnosis in August 2011 with a mitochondrial disorder I feel so lost and everything is out of control. For nearly 2 years we thought we had been blessed with a beautiful HEALTHY little girl. Now we are living in a different reality and everyday we are having to relearn how to care for our baby. When she is laughing and giggling it's easy to forget that she's sick at all. And then she turns blue while playing and has to use her oxygen or she starts crawling while playing because her legs are too tired and we are reminded that her problems exist inside her little body which is not as healthy as we first believed.

Since this is the first blog I'll write alittle bit about her symptoms and hope that this is the only way she'll ever be affected...
Audrey suffers from extreme fatigue on a good day she'll sleep 16 hours, on a bad day she'll sleep 22. To complicate this she has hypoglycemia when she fast for more then 10 hours. We give her cornstarch twice a day to help stabilize her glucose. Usually be early evening the cornstarch has worn off and she becomes and crying, screaming mess until she eats. She has times when her arms seem to stop working, usually her right one. It just hangs there and she doesn't seem to recognize that it belongs to her. She wears oxygen while she sleeps for her hypoxia and now she wears oxygen when she plays alot. They think she doesn't increase how fast she breathes when her heart rate goes up and she has weak respiratory muscles. On her good days, she'll want to play but will quickly turn blue and need to be on oxygen. She has constipation and some mild developmental delays. She also has temperature instability and heat intolerance. She can't go outside if it's 80 or she overheats. Audrey also has dysphagia. We have to thicken all of her liquids to a honey thickness.

Aside from this people look at Audrey and say "she looks great!" Only her parents seem to notice the dark circles under her eyes and her frantic energy as she tries to stay awake. Only her parents know about the medications and oxygen and thickeners that have changed their daughter's life...