This past January, Gideon had his first swallow study and today was his second one. I must say the two experiences were night and day difference.

The staff was great again, but this time things just went so much more smoothly (despite the picture you see up there). There’s two reasons for this in my opinion. First, I knew what to expect. And second, I actually had the cojones to speak up before the exam began. I summarized Gideon’s diagnosis, explained he was blind and deaf, and then I let them know the best way to approach this procedure. Thankfully, the entire staff was receptive and hopefully I didn’t come across as a witch with a capital B.

After talking to the radiologists, I made the decision that Gideon would not wear his hearing aids (they can get in the way of the picture, and I didn’t want them to do more shots than necessary). I also made the suggestion that I do the feeding, since we were going to have to use tactile cues. The staff was more than happy to let me do it, especially because Gideon doesn’t fight me as much as he fights others… I’m more stubborn than he is and I win 99.9% of the time.

Another thing that was great about today is that Gideon was able to support himself better in the feeder seat… something he wasn’t so good at this past January. This made a huge difference because we didn’t have to have a fourth set of hands holding him place. (Don’t get me wrong, I did my fair share of re-positioning today, but it was nothing like last January.)

The results today were better than even I expected. Liquids have always been a concern because Gideon’s condition makes swallowing difficult. However, there was no aspiration!! The only bad thing is that the liquids put lots of pressure on his airways, meaning he has to really try hard to make the liquids go down his throat. And he does a great job! But after a while, he gets tired and that’s when he could possibly be aspirating.

So it was recommended that we thicken his liquids to a nectar consistency. (Something we already knew we should be doing.) And that can be done with rice cereal in his bottles or thickening substitutes.

Thanks again for praying for us today. After last time I was really expecting it to go bad. Especially since it was just me and Gideon. I’m always nervous because I don’t want my emotions to get the better of me. But after flying solo today, I feel like I’m all grown up.

I can do this special-needs-mom thing.

Last night was rough. Not because Gideon was super sick, but because he was super uncomfortable. If you follow my Facebook page, then you saw that we were up most of the night because Gideon likes to sleep on his tummy…and then his side…and then his tummy-side-back-tummy-back-side…. you get the idea.

As of this morning, the rash and fever are gone. They cut back on his IV fluids hoping to get him to eat more. In fact, that’s the only reason we weren’t discharged this morning. They wanted to keep him for the majority of the day, to give him time to improve his fluid intake. And thankfully, it’s looking like we will be going home sometime today.

We won’t know anything about the results from the nasal swab or the urine culture until tomorrow or the next day. As far as his blood work goes, they aren’t sure if his low platelet count is due to the virus he has, or the genetic disorder, or something else entirely. So we will come back in 4 weeks to have more blood work done when he is healthy again.

For now, we will be glad just to be home. Thank you for all the texts, emails, phone calls, and sweet gestures. We are glad to know that so many people are praying for our little guy.

He’s a trooper for sure.

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.