It’s been a crazy week. After his visit to the ER last Saturday, Gideon was doing well.. for the most part. Unfortunately, he never really returned to his normal, head banging self.

Last night we noticed Gideon had a rash on his abdomen and a low grade fever. This morning he didn’t have a fever, but he seemed to be in pain when I sat him up. I noticed the rash had spread a bit and figured he was probably having a reaction to the antibiotics. As the rest of the morning unfolded, I felt like he was struggling to breath; but it would come and go in spurts. So I canceled his therapies for the day and took him to the pediatrician.

After looking him over, she suggested his rash was due to a virus, and that we should see the on-call hematologist immediately. Once we got to the hospital, the rash had spread, his fever was back, and the doctor made the decision to admit him.

On top of the rash and fever, Gideon’s platelet count is still low (85K). Plus he has moments where he’s lethargic again. He just sits motionless and stares off into space. (NOT what I had in mind when I was complaining about him struggling in my arms!!) Also he’s not eating/drinking anything again and when he does, it’s very little.

So now we are awaiting the tests results from the blood, urine, nasal swab, etc. And since we were admitted later in the day, the results won’t be ready until tomorrow afternoon…sometime around 1 pm (or at least that is what we were told). I will be posting throughout the day as we get more answers. If I don’t respond to texts, emails, and calls, please know it’s probably because we didn’t get much sleep tonight.

Thank you all for your continued prayers and support for our little man. I’m confident he will be just fine. He’s our little warrior and I don’t think he’s going anywhere anytime soon.

Just one week shy of turning 21 months, Gideon had his very first visit to the ER. It started early Saturday morning. He was more fussy than usual and after eating, he did something crazy that he never does…he took a 3 hour nap!!

And even though we woke him up, he never really woke up. He dozed in and out, and was very lethargic. He threw up everything except his toenails, and wouldn’t eat or drink anything. His armpit temperature went from 101 to a consistent 103.5, so we made the decision to take him to the ER.

The only problem was that we were visiting Kevin’s parents which is 2 hours away from the hospital where Gideon’s specialists reside…yikes!! So we hopped in the car, with big sis in tow, and made the 2 hour trip in record time!!! (It was way less than 2 hours…the hubs may or may not have sped. I plead the 5th.)

We checked in, got taken back almost immediately (I may have pulled the terminal kid card on the intake form), had a chest x-ray, blood work and IV fluids, and then checked out! We were there for a total of 4 hours. I was seriously impressed by this!!

The diagnosis was an upper respiratory infection with a small touch of possible pneumonia (apparently it was very hard to see, but someone thinks they saw it). But the interesting part was when they came back to draw more blood. A second sample confirmed the first and we now have to follow-up with a hematologist. Apparently both samples indicated that Gideon’s platelet count is in the 85K range when it should be in the 130K range.

So what does this mean?

I have no clue, and I probably should. They didn’t say what it meant only that we should see a hematologist. I should be researching and calling my PBD parents group…but its 1:30 am and if I’m being honest, I’m too darn tired to care or Google it.

Anyways, whatever the case, God’s not surprised nor worried about it and right now, I’m not either.

ER Visit 1, this mamma 0

Stay tuned for next week, when we have a swallow study, an ABR, and a hematologist appointment…all in the same week.

Lord help me.

At 20 months old, Gideon cannot walk or crawl because of his genetic disorder. When I lay him on the floor, he either licks it or bangs his head against it. So unless we are at home, Gideon is either in his stroller or I’m holding him. More often times than not, he’s in my arms.

He is only 20 lbs, but he is pretty much dead weight. Not to mention, holding Gideon is like holding a 20 pound fish out of water. Sometimes he will be still long enough for me to hold him with ease, but after a few seconds he begins to squirm & needs to be re-positioned. The cradle position quickly becomes boring, so I’ll toss him up over my shoulder where he plays grab-the-hair game and hits himself with my hair. But eventually that gets old for him (and painful for me) and he wants to face-forward. He likes to flap his arms and kick his legs hoping to make contact with something. Usually that something is my face and so I take him back to the cradle position and we repeat this frustrating cycle all over again… until I put him back in his stroller or some sweet soul offers to hold him….bless their hearts.

So the other day, I was going through this routine while holding him in the shower (yes, I’m that crazy), when on the way down to the cradle position his mouth met my arm. Usually he blows raspberries, but this time Gideon bit into me as if I was a state fair turkey leg. When he finally let go, I re-positioned him so I could pop him in the mouth and tell him no.

Thankfully Kevin heard the commotion and rushed in just in time for the awkward hand off. As I stood there in shower, the frustration I felt quickly turned into tears. Why does holding my son always have to be a struggle? Through my sobs, I cried out to God, “What am I supposed to do with a child that fights me all the time?!”

You love him, just as I have always loved you.

In that moment, I realized how much I was just like Gideon in the arms of my Heavenly Father. How many times have I’ve struggled & fought against Him because I wanted to be free to do things my own way? How often do I still push away His guiding hand because I think I can handle it better than He can?

Gideon doesn’t know why I can’t just put him down whenever he wants. He doesn’t understand the danger of licking the floor or banging his head against it. Truthfully, he may never comprehend why I do the things I do and that’s a hard reality for me to accept. I really just want to hold him without it always being such a struggle.

It’s kind of funny because I’m pretty sure God feels the same way about me.

“I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing. .” John 15:5