Keep on Keepin’ on...

I know this isn’t a shock to you, but our little guy is pretty awesome. You see, we’ve had a rough couple of weeks. He’s fighting something and has had a few hiccups along the way. About 4 pediatrician visits, a phone call or two to the on call pulmonologist (can I get an amen for the poor doctors who have to take phone calls at all hours of the day and night?!), an antibiotic, another phone call to the on call pulmonologist, a steroid for good measure, and I think we might be on the mend. Cross your fingers and toes. 

Look at that face. We always know when he’s fighting something because his face gives it away. The bottom right picture is on day three of steroids. Always the worst day. Our nurse shared that steroids can make kids agitated or hyper. I think we realized which way it sends Wyatt. Pure agitation over here. ‘Roid rage is real, folks. 

Tonight he was much better after eating twice as much as normal and some extra snuggles with Mom. This was him when we were singing our goodnight song. 

That’s our happy boy!

He continues to love to roll and sit. Check out these videos. Please note, he finds the most unusual ways to do just about anything, as evidenced by the slightly awkward roll into sitting. 

But check out how long he sits now!

Before you ask, yes... this was at bedtime. It’s a common pattern in our house. We put him to bed, he thinks it’s playtime. Seriously, dude. 

We have an appointment with GI tomorrow to review his weight. He has been eating more real food recently and we are hoping the avocado and other foods are helping. I suspect we will add some calories to his feeds, as he hasn’t gained much weight since our last appointment. I’m also excited to share with them he has tried drinking orally. He attempted a straw and did well but has since refused since we have to help. We are now using a training sippy cup with a bottle nipple and he’s loving it. Doesn’t love when we help him (he is two, afterall..) but loves to try. That’s important. Lots of tube fed kids can become so frustrated with oral feeding that they refuse to do it. But our guy has some willpower and drive, so we will continue to expose him to oral feeding following his lead. 

In addition to GI this week, we will get an EEG done on Friday, as we are suspecting he is having absence seizures. He will stare off for 3-10 seconds at a time. Given the fact that he has a genetic “error” that includes a high likelihood for a seizure disorder, we knew it was important to reach out to his neurologist and share this information. She ordered an EEG stat and we got in for Friday afternoon. In all likelihood, the EEG won’t capture anything, just like when you take your car into be fixed and it doesn’t make the sound you’ve heard for days on end, but I suspect our neurologist will want to see him following the EEG and will treat as if he does have absence seizures. For those who are unfamiliar, absence seizures are also referred to as petit mal seizures. They are not the violent shaking episodes people think of with seizure disorders. These are seconds of staring off into space, or stopping in the middle of what you’re doing and then returning to whatever it was you were doing. We are hopeful this isn’t a sign of something more and that there is a plan for treatment. 

We appreciate your continued prayers for improved health during cold and flu season, as well as a good recommendation for nutrition tomorrow & encouraging results following the EEG.