Blessings in Disguise

This morning started like every other day has this week. I got Makenna up at 7:15, and started getting her ready for school.

When she first got out of bed, she told me her leg hurt. I just kind of swept it under the rug for the moment, thinking it was just from sleeping on it funny, and told her it would feel better once she had been up for a little bit.

We brushed her teeth, and Miss Independent dressed herself, and we came downstairs to fix her hair. That's when she told me again that her leg hurt. So I told her to come sit down and let me look at it.

HHHOOOOLLLLYYYYYY cow.

She had a knot on the top of her right calf the size of my fist, and her little leg was all swollen around it. It was red, and got darker closer to the top of the knot. Then, at the very top, it was lighter, kind of white, and had yucky stuff coming out. Disgusting, I know. But seriously, ouch.

I felt terrible for brushing it off the first time she said it, but she had seemed otherwise completely fine. And honestly, my head is still spinning from the convo with the neurologist about Mikah last night, and I didn't sleep too well.

Anyways, I knew then that there was no way I was sending her to school with that nasty thing on her leg, and called the doctor. They wanted to see her, and made her an appointment for 11.

I gave her some benedryl, and the nurse had told me to give her some children's ibuprofen to help with the pain, so I did that as well.

Dr. Lye said that the knot was a bug bite, which was what I suspected, and that she had an allergic reaction to it. And it had swollen up so much during the night that the skin had burst, and infection had possibly gotten into it. So he wrote her a prescription for an antibiotic, and drew a circle around the bite on her leg.

If the redness continues to spread outside of the circle (which is hasn't so far, thank God), then I have to start her on the antibiotic, because that will mean there is infection. And if she starts to get red streaks up her leg, I have to call back so he can re-evaluate and decide if she should take the antibiotic, or be seen again to make sure there isn't a stronger infection present.

All in all, not such bad news, and I'm glad that I had given her benedryl. It has seemed to help a lot, and she is no longer telling me that it hurts constantly. So we are hopefully on the road to recovery from that one!

But, it was in a way a blessing that she had to be seen today, because I also got to talk to Dr. Lye (Mikah's doctor as well) about what Dr. Jacobson had said.

Dr. Lye said that he called the genetic specialist this morning, and she is supposed to call him back by the end of the day to talk to her about the enzymes that were off in Mikah's bloodwork. Once he talks to her, he will know more, but he can't read as far into the genetic aspect of things as she can.

He did say that occasionally, certain enzymes can show up on tests that they are off and, when tested again, it can all be a false alarm. But there are others that if they are off, it isn't good news, and that's why he wants to talk to the specialist to see what was off for Mikah.

So, for the moment I was kind of thinking well hey, maybe this is all just a false alarm. But then, Dr. Jacobson called me, while I was still talking to Dr. Lye.

He was calling to make sure that the specialist's office had called me to set up Mikah's appointment (which they did, and he goes in on Monday at 10am!), and I told him they had. He said he was glad, because he wanted up in early next week.

He also said that for the weekend, we need to be on standby with Mikah, which was the scary part. There are some days that Mikah doesn't eat very well, and will only eat an ounce or two at all of his bottles. We had already talked to Dr. Lye about this before all this genetic metabolic stuff happened, and we all just kind of attributed it to hes-a-growing-baby.

But, for now, until we get things figured out with the specialist, Dr. Jacobson said he doesn't need to go more than 4 hours without eating. This means that if he goes more than a couple bottles in a row only eating 1 or 2 ounces, he goes straight to the CMC emergency room. If he spits up big after multiple bottles, or multiple times after one bottle, he goes straight to the ER. If he seems lethargic at all for any length of time, he goes straight to the ER.

This is scary to me, because I guess it makes things seem more real, and potentially more serious. Bear in mind, though, that as of now, Mikah hasn't seemed to have any problems with his protein levels being off. He DOES have the mis-shapen head that the disorder causes, and his head is growing too quickly, which is also caused by it. But he has tolerated what he has been eating well, so I'm praying the he is a good little eater this weekend, and we get answers on Monday.

This also means though that he can no longer sleep through the night. Anything longer than 4 hours for Mikah is considered fasting, and could be dangerous for him if he needs certain proteins for his little body to get through this. So we want to keep him stable, and not take any chances.

Dr. Lye also said no more baby food until we figure it all out, just to be on the safe side.

Also wanted to share that Dr. Lye was pretty amazed that they got us in with this doctor on Monday...he said that it usually takes a minimum of 10 months to get an appointment with her of any kind. So way to go Dr. Jacobson!

Although in a way, that little fraidy-cat inside me keeps saying "Whyyyyy did they get you in so quickly? Is this that serious of a matter? Are his enzymes and proteins that far off, to where it could be that dangerous?"

I have to keep telling myself THIS IS IN GOD'S HANDS, not ours, and really, not in the doctors either. Yes, they will care for Mikah and help regulate everything so that he has the best chance possible of coming out of this onto the other side like a pro. But, the doctors are in God's hands too. And so far, God has truly blessed us with an amazing team of doctors!

Dr. Lye said that he will call me this evening after he speaks to the specialist, and let me know what she says. And hopefully then we will have a little more insight into the whole thing.

It makes me wonder though....

If "fasting", or going more than 4 hours without food, is that dangerous to Mikah, then it could have been to Khoen, too. Dr. Jacobson said he would have shared this disorder as well, being his twin.

And in May, Mikah and Khoen started trying to sleep through the night. They weren't always going all night, and Khoen especially would wake up at 2am wanting his bottle on most nights. But, he did sleep all night at times. And in May is when he had his spell of being hospitalized for lethargia. Neurological crisis. Due to fasting, or sleeping through the night?

And he was getting even better at sleeping all night at the end of May, first day of June. And on June 2, he didn't wake up. He shut down during his sleep. Neurological crisis. Again, due to sleeping through the night?

Because had I ever had the slightest inclination that it could be dangerous for him, I would have continued to wake him (and will continue to wake Mikah) until this was regulated, and no longer a concern.

But I didn't know, and I was just doing as I was supposed to do. As the boys slept longer at night without waking up, I let them sleep. And had a bottle waiting for them the minute they awoke.

I didn't know. We didn't know. And now, because of sweet Khoen, we do know, and hopefully we can get this under control before anything has a chance to happen to Mikah.

Just please keep praying for him. Prayer works, and we know that above all else, God really is good. Amazing, even. More than amazing.

Its just so scary to think about how quickly things could happen, and I am trying all I can to not think about that right now. To think that in this moment, Mikah is laying here beside me on his playmat, just playing and being happy little laid back Mikah. And he is ok.

Again, I can't thank everyone enough for the love and support that surrounds us as we make our way through everything. And to everyone who is helping out or has bought tickets for Khoen day, thank you.

God IS amazing, and through him we will be ok!

Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.
-Philipians 4:6

If I hear from Dr. Lye tonight, I will update and let everyone know what the specialist says. Fingers crossed for good news!