I know one of these times I will be able to post how well everything is going. It is probably just that when Audrey is feeling well, I am busy enjoying what she is able to do. When she is not well I need to turn to my blog to spew everything that she is going through.
Audrey continues to get sick every other week or so. While we are waiting to see an immune specialist, we are doing our best to keep her healthy. Since her last illness she has not yet made it back to her regular feeds. As a mom, there is nothing so distressing as not being able to feed your child. If I can't do anything else for her I want to at least be able to feed her. But apparently this is a big, long-standing problem for mito kids. Whenever their little bodies are stressed their GI system just stops. I know it's hard to imagine. She has a feeding tube to her stomach, how hard can it be to feed her? Well I can put the formula in but it will just sit in her stomach until she throws up or I vent her and let it all come back out. It's been almost 2 weeks since she was on full formula feeds. This mommy is getting worried! I'm watching her get more tired and lose more weight, knowing we aren't giving her what she needs to get healthy and beat this vicious cycle she seems to be caught in.
For one afternoon Audrey had fun. It was hot on Saturday and though she wasn't tolerating her feeding she woke up from her nap feeling OK. I let her outside with her brother to play in the sprinklers. Normal, 2 year old fun! She played for an hour and though I knew she was quickly burning through her energy stores, I didn't have the heart to stop her. Finally after an hour I made her come in. She quickly collapsed on the couch and there she stayed until bath time. She was wiped out Sunday and Monday also. How sad is a disease where one hour of play causes 2 days of exhaustion?!? It is so unfair that these children endure so much medical stuff all for one hour of play here and there.
In our quest to keep her healthy, we are looking into alternative care for her. She can't go to daycare any longer. Not only does she become ill if someone even looks at her, she just doesn't have the energy for it. When I picked her up today she was a mess. All of her feeding had backed into her bag, she was crying begging to go home and so exhausted she slumped forward in her carseat to suck her thumb since she couldn't lift it up to her mouth.. I can't watch her go through this. I know I've written about our struggles for services for her but it is so unfair! Every program or waiver I look into I get the same answer..."If she has medi-cal she will qualify." Her pediatrician wrote for home nursing care. The insurance company authorized 400hours per calendar year of nursing care. That works out to one 8 hour shift per week. The nursing company said not to worry, we can just put her on medi-cal and they will cover the rest. The problem is she doesn't qualify for medi-cal! We are doing everything in our power to take care of her and remain working, contributing members to society but the system is working against us. Instead of funding programs that help working families keep working, I'm encouraged to quit my job so my child can get what she needs. Unfair!
And that's where I am right now. It's unfair! It's unfair that my daughter can't eat any food. It's unfair that I am unable to provide her with the services she needs. It's unfair that she has to work so hard for just a little fun. It's unfair that she has to be affected by mitochondrial disease at all! No child should have to go through what she, and thousands of other children like her, go through every day. I know that there are many other children who are sicker than her, who are fighting for their lives or have already lost the battle. But right now, for my daughter, all I can say is it's not fair.