Monday, May 20, 2013

My Normal Special Needs Kids

What is normal, right? 

When I think Special Needs, I think of kids with Down's or CP or missing limbs. None of my kids fall into those categories, but two of them have some small-ish, special-ish needs.

Most of the time these needs don't really interrupt our day. Which is great! 
But the last few weeks we've been doing some doctor visits and it actually makes me feel very thankful.

1- So many parents see multiple doctors every month for their kids' needs!

2- My other kids seems so effortless. Ok, that might be a slight exaggeration.

3- We have such great medical care here in the US! Wow! Without this care, I wonder how long my kids would survive. And our state makes it so affordable. Thank. You. Jesus.

Max is my really great, out-of-the-box kid who doesn't like to eat. Weird, I know. The picture was taken a few months ago and his hands are covering his g-tube because he is getting a little self-conscience about it. We are working towards gaining weight by eating real food so he can take it out.

The problem is, last month we discovered he lost weight. That was a sad sad day. After an x-ray showed his insides were full of poop, we did a cleanse and saw a little improvement in his appetite. But not as big as I was praying for. It's a crazy catch... if we fill him up with more of his high-fat milk than it clogs him up and takes away his appetite. 

His kid could really use your prayers. Heck, this mom could really use your prayers! It is sad to see my energetic 6-year-old so boney. I also have to constantly chase away my fear. Just writing this is causing me to tense up.

I know God has good plans for Max. I know someday, something is going to click in Max and his appetite will work the way it was designed by God to work!

Deep breath. 

And this little sand princess has another small special need. It's not eating. Nope, she is getting chubbies on her arms and legs and I'm grunting in surprise when I pick her up.

Eva is HIV+ and most of the time it's a non-issue. We actually think about her HIV much less than Max's eating issues. 

But the last two weeks have been interesting with her initial visit to the PID (Pediatric of Infectious Disease) and blood work. She has such great doctors that I'm not even too bummed about driving 2 hours to see them every few months. 

We were disappointed to learn that two of the ARV's (sweet combo of meds for HIV) she has been taking have been resisted by her body. The count of the virus in her blood was higher than we were hoping but not crazy. We had to get more blood drawn for the new batch of meds and may I say a small word to all nurses in the Poking Rooms? 

Please, BE FAST!! Fast trumps gentle, fast trumps friendly. It's not your job to talk it up with the moms before the Poke, to try to say comforting words to the screaming kid or to wait one nano-second fiddling with your gloves. Thank you.

So we should be getting Eva on her new meds very soon and start to see her viral load plummet. Of course, I'm still asking God to heal her out right. Why not? 

God has been so kind to our family and we know we will see much more of his kindness. 

Would you guys believe with us that God will change Max's mind and body about food and that he would chunk up? That would be the best thing ever. Well, it would be so awesome anyway. And pray that God would do a blood exchange in Eva and her PID would be shocked to find none of the virus in her body!


  1. It's so good to read about your family again! There is so much greater meaning and love for you guys after all we've experienced. Praying for both of your kiddos! God is so good and He in still in the business of miracles:-)

    1. Erin! Oh I'd love to see you again! I'm smiling because the first time I talked to you I just called you Jerba Jungle. :)
      Hope you guys are doing well. Thanks for the prayers!!