prayer for a long shot

****miraculously reappeared, in case you want the details....

Annie's alopecia has been on the back burner for awhile. This loss comes in waves of grief and acceptance. The acceptance is hard when you feel like there is just something you might be missing. Annie was at a huge milestone when her hair was falling out, and I have just never been able to let go of that. She had just turned one, Just started drinking cow's milk, and just had her one year immunizations. He hair fell out literally within two weeks of these events.

So, yesterday, we had a metabolic specialist in the special care nursery seeing a newborn, and this Dr. started having a conversation with a coworker of mine. In the conversation, he mentioned how excited he was that the State of OK had added an additional disorder to their newborn screening. In case you didn't know, every baby has blood drawn at 24 hours of age. This blood is sent off and is tested for various metabolic disorders.

This new "disorder" that was added is called biotinidase deficiency. and a main symptom? alopecia.

This hasn't been on the radar at all because #1- it's already screened for in most states. For whatever reason, OK just recently added it. and #2 - it's extremely rare. 1 in 65000 births.

The good news is that is extremely treatable.

Of course, this alone was fairly encouraging to hear- but what was more encouraging was the story he told my coworker. He recently saw a one year old boy, who had been seen by a neurologist because the parents felt like he was overly clumsy. When seen by the neurologist, the dr. realized the boy's hair was falling out, and sent him to see this metabolic specialist. The little boy was formula fed and recently transitioned to cow's milk. The dr. screened him for the the def. and what to do you- he had it. The dr. explained that because formula is fortified with vitamins- kids with this def., if not screened when newborns, can fly under the radar until they start drinking cow's milk- which is not fortified with all the vit. and minerals like formula.

So, of course this is fascinating to me because it is identical to Annie's timeline.

I spoke with her pediatrician today, and she was very excited to screen Annie for this- and so we cross our fingers and wait...

We're going today to have the labwork drawn.

So, this is a long shot, I know. But it's something, and it makes me feel validated for my initial questions and just not being satisfied with our conclusions. In the end, I might have to be satisfied, but as long as things like this pop up- I am going for it. for my child.

weird

I posted a long drawn out post yesterday and somehow it has been erased. so weird.

I'm not going to type it again.

but you can pray for some lab work we had drawn on Annie yesterday. Through some providential conversations, we discovered one other possibility regarding Annie's alopecia. It's a long shot, but a very, real possibility. and a curable one.

If the tests come back positive, I'll go into the explanation.

I am hopeful, but also know that this still might be plain ole alopecia- and either way, we are thankful for a beautiful child. (albeit stubborn, strong willed, and committed to the terrible two's!)

say prayers!

I shall not be defeated

About two days ago, Annie decided she would quit using her words. That is, quit on her whim. There has been lots of pointing and mumbling. and a VERY strong commitment on her end to outlast us. This morning, as I was literally in tears at her refusal to use words, I told Josh- I just don't get the benefit on her end. What does she gain?

Josh basically said for me not to try and understand it. she's 2. and extremely willful.

My dad told me to brush her off, whistle while I work so to speak, and let her know I would be happy to help her when she speaks in words I can understand.

And she CAN still use her words. Last night after feeling like I was about to lose the few marbles I have left, I decided to open the back door and let her blow off some steam or frustration- the door opened and she magically started speaking again. A few minutes later, she and josh were doing something, and josh needed some water and she walked over to the hose to hand it to Josh. Josh said- "Annie, you are SO smart".

She grinned and replied " I SMART!!!"

ugh. she is too smart for her own good.

parenting is hard.

taste of summer

I took the girls walking this morning- which was crazy beautiful, by the way, and you could almost taste Summer. I have come to realize that Spring in Tulsa is a little "gusty" for my taste. unless I am at the beach, I prefer a soft breeze, not one that blows pollen up my nose and knocks your kid off the swing set. (that didn't really happen, but it could, I am certain).

Anyway, I do love early Summer, swimming pools, the sound of sprinklers, and iced tea. I love the coolness of an air conditioned house when you've been sauntering about in the early Summer heat.

All that to say, this morning felt like that.

I'll be singing a much different tune in a couple of months. but then I can talk about my FAVORITE season, Autumn.

have a good day, y'all! Friday is my 24 hour day. meaning, I am up 24 hours because I work on Friday night, and my nap taking days are no more....