We took PB for a second opinion about her head. She had a CT scan, and her bones are all open, nothing is fused. Most people would probably say that she must not have had craniosynostosis to start with. We say it's a miracle, God's gift of healing shown in an unexplainable, yet tangible way. Why?
Well, both a nurse practitioner and a neurosurgeon diagnosed the craniosynostosis within about 30 seconds of seeing her. We could see it too, we could feel the ridging along the fused suture, and we saw her head get worse over time. Like I said the last time I posted about it, I was incredibly discouraged by it, and was struggling with depression and asking God a lot of "why me" questions.
One of my worst days happened to be a Sunday, a Sunday when PH was gone hunting and I was left alone with all three kids to get ready for church. After the service, I told our pastor what was going on and asked for prayer. He laid his hand on her head and prayed for healing. She cried while he was praying, as if she was in pain. She was happy and smiling before and immediately after he prayed. A friend caught me on the way out of church, and could tell there was something wrong. I explained again what was going on. She laid her hand on PB's head and prayed again for healing, for the bones to move and for everything to be normal. AGAIN, PB cried like she was in pain during the prayer, despite being just fine before and after.
That was the Sunday before we went for the second opinion. The second opinion doctor didn't immediately say that she thought PB had craniosynostosis when she saw her. Instead, she said that she wanted to wait until she saw a CT scan, and explained what the plan would be if the CT showed that she did have it. The way that she talked though, it sounded like she didn't think PB had it... We saw her on a Friday. The CT was the next Monday. That Sunday, we got prayer for her again, this time praying specifically that the CT would be clear and normal.
Right after the CT, we went to see the neurosurgeon again, so she could look at the CT and tell us what she saw. She looked at every single suture. Every single suture was open. No craniosynostosis!
That miracle was so wonderful and has boosted my spirits immensely. NOTHING is impossible with God. I know that in a very real way now. Which has been a blessing, especially with the latest news.
Remember how I said the UTI was kind of a big deal because of how young PB is? She had to get some testing done to check her kidneys and the whole urinary tract (which includes kidneys, ureters, bladder, and urethra). We found out on Wednesday that her parts aren't put together quite right.
Normally, the kidneys make the pee, the pee goes down the ureters into the bladder, the bladder fills up, which closes off the openings to the ureters, and the pee comes out. PB has a condition called Vesicoureteral Reflux (VUR), which in short means that the pee goes from the kidneys, down the ureters, into the bladder, and then back up the ureters and into the kidneys. This is problematic, because if bacteria gets into the kidneys, it can cause infections and scarring.
The doctor says she has about a 30-40% chance of outgrowing it, so for now she's on antibiotics every day to hopefully prevent another UTI, and as long as she doesn't have more infections in the meantime, she'll have the testing done again in 6 months to see if it's gotten any better. If not, we'll discuss what our options are at that point. Oh, and the other thing? It is a hereditary condition, and there is a 1 in 3 chance that PK2 has it too, since she's also had at least one UTI. So she has to have the same testing done. As if she hasn't been through enough already...
Still though, I'm surprisingly calm and unconcerned by this diagnosis. My biggest worry is that PB will have an infection and we won't know it, because it can be really hard to tell when a baby has a UTI. And that PK2 will be traumatized by the testing to find out if she has it too... she's been through a ton, including some really awful procedures through which I've had the displeasure of holding her down. But she's never been old enough to remember. She's never been old enough to look at me with distrust or resentment for holding her down. She just turned three. The test involves a catheter. How do you reassure a three year old that it's ok while you're holding her down so a nurse she has never met can stick a tube up her you-know-what?
On top of all of that, PK1 has been asking about PB's condition. I don't know what other parents would do, but we are pretty open with medical stuff, especially with PK1, because he's already had to witness PK2's struggles. So, we explained PB's VUR to him. And he's had some really hard questions to answer. This morning, on the way to church, he asked if PB was better yet. Of course, I told him no... then he asked why she has VUR. The only answer I had was that it's just the way God made her... Can you guess the next question?
Yep, he asked WHY God would make her that way. I was pretty much stumped, and the only answer I could give was that I don't know. How do you answer that one?? Luckily, "I don't know" satisfied him, and he just replied that he'd have to ask God when he gets to heaven. I talked to a couple of the kids' ministry leaders after church, and asked what they would say if faced with that question, and they had some good advice.
We talked about it some more on the way home, and I reminded him how God had made PK2 special, and how God has been able to use PK2's journey to help other people with kids like her. I told him that God has a purpose for everything, that God doesn't make mistakes. I told him that we don't always know God's purpose, but that there is ALWAYS a purpose. And I told him that I am sure that there is a purpose, a reason that God made PB the way he did.
I am really glad that this issue is one that can be fixed. It doesn't involve major surgery, it isn't life-threatening. In comparison to the other things we've been through, this is pretty much no big deal. And you know what? I think I am actually a little bit *thankful*. It's opening up a dialogue, a line of communication between us and PK1 that I think is going to strengthen not only his faith in God and His plan, but ours too. It's making me contemplate things in a totally different way, and bringing out a childlike faith and trust in God's goodness. I am actually looking forward, in a way, to seeing where this journey will take us all in our faith.
