Mikah's Neurologist Update...

This evening, around 6:15pm, my cell phone rang. I recognized the number as Mikah's neurologist, and answered it hoping for some good news.

For those who aren't aware, Mikah went to the neurologist on August 30 to check on his head growth. His head kept jumping percentiles on the growth chart, so his pediatrician had already sent him for an ultrasound of his brain.

The ultrasound had come back mostly normal, only showing a little bit of extra fluid around his brain. (I'm pretty sure I explained more about all of this on the previous blog. If not, and you want to know more, let me know.)

Anyways, the neurologist had sent him for bloodwork to see if he had a genetic metabolic disorder. This particular disorder can cause SIDS in babies, and if Mikah had it, then Khoen would have had it as well. The neurologist wanted to do it to make sure that what happened to Khoen wasn't a bigger risk for Mikah than normal.

The disorder can cause extra fluid in the skull, defomities (such as mis-shaped heads, which Mikah does have and may need a helmet for later), and, as I said before, SIDS, by causing infants bodies to just shut down.

Well, Dr. Jacobson got the test results back today...and Mikah DOES have this disorder. :(

Dr. Jacobson explained to me that this will affect the way that Mikah's body metabolizes proteins, and can affect him in a couple of different ways.

One, it could cause particular proteins to become toxins in his body, which could harm him.

Two, his body could store up too many of certain proteins, causing his body to go into what he called "neurological crisis."

Three, his body may not get enough of certain proteins, which can also cause this "neuroligical crisis."

There are other ways, too, but he said these are the most likely. "Neurological crisis" is pretty much when the body reacts to either of these scenarios, and just shuts down. It causes sudden extreme lethargia, and can cause babies to just quit breathing.

He also explained that this is most likely what happened with Khoen. He said that there was still no reason at the time to wonder about it in Khoen, because although his head was growing too quickly, he had no type of deformities, and his head was perfectly round.

But, when Khoen was hospitalized in May due to his soft spot swelling, and his not waking up for almost 3 days, Dr. Jacobson said that this was most likely an episode of "neurological crisis" that we caught in time. He said that either a protein in his formula could have stored up inside of him, or turned into a toxin, and it caused him to shut down, causing the lethargy. But, since he was in the hospital on IV's and not eating as much as he was used to, his body was able to get rid of some of this protein, and he went back to his normal little happy self.

And then once he was back at home and eating like normal again, his body began to store the protein again, and that is what caused him to just shut down and stop breathing on June 2. :(

So, Mikah has been referred to a metabolic specialist with Carolina's Medical Center (Levine), and Dr. Jacobson said they should be setting me up with an appointment asap. I should know when it is going to be tomorrow, because they don't want to waste any time.

This metabolic specialist will first want to retest Mikah, to ensure exactly which proteins we need to be monitoring. And once we know, the doctors can set us up on a special diet for Mikah that will stabilize everything, and help to REDUCE the risk of SIDS due to the disorder. This is still scary though, especially after all we have been through from losing Khoen.

So please, please say an extra little prayer for Mikah tonight, and for the next few weeks. I will feel a little better once we have him stabilized on his new diet, but for now I'm a nervous wreck.

All in all, I have to keep reminding myself that above all else, THIS IS IN GOD'S HANDS! And He is carrying me, Mikah, and our family through everything.

Mikah is a strong little guy, and he will get through this. Just please pray. <3

I have been starting Mikah on different types of baby foods, and trying a new one with him each week. But for now, I'm halting the whole process. I am going to stick to just his formula, because Dr. Jacobson did tell us that is can happen suddenly.

If he does get a protein from a baby food that he can't metabolize, he could completely shut down, and I don't want to lose my other son. It's all just so scary, and now, again, all I can do is cry.

I trust the Lord, and I know that He is in control. And as I said, He will carry me through. But, I'm human, and I'm terrified, and my kids mean everything to me. So, I can cry, and it's ok.

Khoen baby, please stay close to your brother. In a way, you saved his life, little buddy. Had it not been for what happened to you, we may never have found out that you both have this disorder, and it could have been devastating for Mikah. I wish we had caught it when you were still alive, but I can't focus on that right now. Mommy did all that I could for you, and it still never feels like enough. I miss you so much, even more now. And I love you so, so much. :'(

Knowing what happened to Khoen, what caused his SIDS, doesn't make everything easier like I thought it would. I thought that if I had an answer, a definite reason for why Khoen passed away, that it would make me feel better than just knowing he had SIDS in general.

But it doesn't. My mind keeps wanting to say the what ifs....

What if Khoen had been sent for a second opinion?

What if Khoen had seen Dr. Jacobson?

What if we had caught this disorder when Khoen was alive?

Could we have saved him?

Would he be in my arms tonight?

:'(

At this moment, all of these thoughts are OVERWHELMING me, and it's really hard. I can say a million times that I know Khoen lived his whole life as God intended, and that God would have called him home that day no matter what. And I do believe it, whole-heartedly, but its hard to make my heart listen to my mind.

Once again, my heart just wants my kids. All four of them.

Makenna Faith.

Kaisyn Hope.

Mikah James.

& my angel, Khoen Lee.

Pray for strength for me tonight, and tomorrow. This is hard, and I'm scared for my other son. I need him. I need Khoen. But most of all, I need the Lord, and He is here, just as Khoen is here.

I'm going to rock Mikah, and feed him his last bottle, and put him into bed. But I don't think I will sleep well tonight. I don't want to take my eyes off him. I just want to keep my hand on his chest the whole night, and make sure he continues to breathe.

Last thing....when I say this disorder can cause him to shut down, that's literally what it means. It means that if he were to stop breathing and his little heart quit beating, just like his twin brothers did, you can't just shock him and put him on a ventilator to save him, you'd have to fix the PROTEIN. And right now we dont know what it is, which is what is so scary.

Just pray, friends. I can't thank you enough.

<3