Time Flies...

... when you’re having fun! 

We have had a wonderfully busy summer and our favorite guy has done some cool things. It’s probably easier if I just do a photo dump and explain in the photos. 

{Photo of Wyatt wearing a bib that says, “These fools out my cape on backwards”}

Wyatt had his swallow study consult (wearing that rocking bib!) and we determined that at this time we are going to focus on increasing volume rather than texture. She did believe he was safely swallowing the puréed foods, so he can eat as much as he would like. She also said if he’s grabbing for our food or other foods on a tray, we can watch him closely but let him try it. He’s tried pizza, spaghetti, Macaroni and cheese, and some ketchup. We will reassess when his volume increases and he’s taking more by mouth. In the meantime, he’s growing and that’s huge for him. 

{Photo of Wyatt laying on the floor snuggled with his beloved blankie, with a huge grin on his face.}

We met with a few specialists so far this summer and they’ve all been pleased with his progress. His GI joked that she didn’t even recognize him because he’s grown so much, he’s blabbering some more, and moving all over the examine room. She was more than pleased. She was ecstatic! 

{Photo of Wyatt with his daddy. Both of them are wearing bright shirts, his daddy is smiling and Wyatt is trying to eat his fingers.}

We went to a family reunion in Virginia and had a blast visiting with everyone. Wyatt got to swim with his cousins, roll around on the floor, and got lots of love from the aunties. It was nice! He also learned a new skill! Check out the video. 

{Video is Wyatt crawling across the floor trying to get the remote control}

We finally moved into our new home. It may take us a bit to get settled, but it feels good to be home. 

{Photo of Wyatt sleeping in front of two boxes. He’s snuggled in his jammies, not helping to unpack.}

{Photo of Wyatt in a striped bathing suit, giggling at himself while pulling the pant leg on his suit.}

He’s continued with PT both on land and in the water. During these sessions, he never ceases to amaze us with his personality (he’s VERY strong-willed) and definitely does things on his plan, not ours. You can’t see it well in the photo below, but he’s standing. With only support at his ankles. This is HUGE. He also did repeated sit-stands, which he’s never done before. PT was blown away. We just kept saying, “Whoa! Who is this kid?!” (Never mind that he’s licking his PT... and is only motivated by her hands. Whatever works! Thankfully she’s on board with the unusual ways he’s motivated!)

{Photo of Wyatt in his striped bathing suit, in the pool with his PT, standing. His tongue is out, licking his PT}

Can’t believe it’s almost August. We have fun things to look forward to, including a trip to Michigan! 

Sleep Study Update, Photos, and Other “Stuff”

We got the results back from Wyatt’s sleep study. Turns out, he didn’t do so well. The sleep doctor who interpreted the study was terribly alarmed. Thankfully his pulmonologist was able to talk her through his case and eased her fears. She brought up a trach again, which was shocking to us. We have a plan, but that plan involves going back to presurgery settings (which are high, even for a grown adult) and monitoring closely. He will see ENT again to determine if there may be scar tissue impacting his airway, and we will do a repeat sleep study. There were a few variables that likely played a fil in his poor study, including being diagnosed the next day with an infection, no humidification on his machine, and starting him low for the titration instead of starting high and going lower. We will continue to watch to be sure he’s breathing safely and will reassess after the next study. 

{Photo of Wyatt, laughing while wearing his Dino pajamas and with one hearing aid out of his ear because he can’t keep the darn things in his ears}

This week we have a swallow study consult scheduled for Thursday morning. This study will show what texture of foods are safe, given his uncoordinated swallow. Mama is a little nervous, since it involves pushing him a bit with foods and choking is probably the scariest thing I can think of (which is saying a lot, since he’s a medically complex kiddo who has been through lots of scary things...). We are supposed to bring food, so I’m not sure if the appointment will include the actual study or just some practice with food. 

{Photo of Wyatt in a tropical onesie, trying to eat the remote control. The remote control seems to be his favorite thing to try to eat!}

This weekend Wyatt had a bit of a scare while we were at a friends house celebrating her daughters birthday. He had a seizure. This is a little alarming, as his seizures have either been due to a fever, or have been staring spells (partial complex seizures). This seizure was all four limbs convulsing upon waking up. We consulted with the on call neuro who felt like it was okay to keep him home and monitor. We followed up with his primary neurologist who wanted to increase his Keppra. We will continue to monitor and attempt to get it on video if it happens again. It’s easier for her to tell us what may be going on if she can see it. 

{Photo of Wyatt, upside down, laying in the middle of wood floors, in his new house!}

We are hoping to settle on the new house in the middle of July, but Wyatt had the opportunity to lay on the new floors. We were in the house when he had an unfortunate diaper issue, so he had his first diaper change. And since we weren’t ready to have that mess on the carpet, he got the royal treatment on the living room floor. As you can tell, he didn’t seem to mind the freedom the empty room gave him. We look forward to so many adventures in our new home. 

{Photo of Wyatt, mid sit/falling over with his hearing aid laying on the floor next to him. He’s laughing as he’s starting to fall over onto the rug}

We hope you all have a fantastic week and Happy 4th of July a few days early!