Continued Progress...

We have had a busy month, that’s for sure. Wyatt started out the month sick, then had surgery, followed by an UTI, and now he’s gearing up for his hearing aid consult. In between all that, we found time to hang out with friends, go to the zoo, hit up some doctors appointments, and continued therapy appointments. 

{Big boy getting ready to see the animals! Enjoying the breeze from his stroller fan, while “waving” to his fans.}

Wyatt got to see the penguins, an elephant, the giraffe, and some flamingoes. We told him all about how special flamingoes are to mom and dad, since we were married at the Flamingo in Las Vegas. 

{Posing with Mom and dad by the flamingoes. Wyatt is more interested in the fan than taking a photo.}

Wyatt spent a good portion of last week sick following his UTI, but he seems to be on the mend. We followed up with urology following his surgery and everything appears to be healing well. We even got the all clear to come back in a year, rather than every 6 months. His doctor gave him a stern lecture about actually making it 365 days before seeing him. Let’s hope he listens to the doctor, since he doesn’t like to listen to his mama.

 {Wyatt snuggled with mommy. Notice his crazy hair!}

Wyatt has been showing an increased interest in food and things in/near his mouth. He’s been cleared for puréed foods for a while, but we were trying to keep him healthy for surgery so we backed off the foods for a while. We are back to playing and exploring (and eating!) foods again. He will have a swallow study soon, which will give us more information about what foods he can safely eat. He’s starting to suck on things like our shirts, arms, fingers, feet, basically anything he can get in his mouth, so I gave him a bottle with some water in it. He did 7 sucks. Not bad for a kiddo who hasn’t had a bottle in almost a year and a half. 

{video shows Wyatt playing with a bottle, not very happy when Mom tries to help him.}

{picture of Wyatt trying to feed himself, making quite a mess of his baby food}

He’s also started showing an interest in standing. We are working on getting him his own gait trainer at home, which is what he uses at PT. In the meantime, we found a used baby walker and he’s started spending some time in that. I suspect it won’t be long before he’s running over our toes. 

{video of Wyatt in the walker. A few seconds in, he makes the walker move on its own}

We know the sky is the limit with this boy! He continues to be happy most of the time, unless he’s at PT/OT, or when we tell him no. His best friend continues to be Duke and he’s started screaming at Duke when he moves away from him. 

{photo of Wyatt in his walker. He’s giving Duke, the dog, a look because he can barely reach him to pet him.}

Up next: hearing aid consult! I see some bright aids in his future. 

P.S. in case you’re wondering why the captions are more descriptive than usual, I’m trying to be inclusive of readers who may be blind or visually impaired and rely on text to speech software. That software can’t accommodate images, so those readers are left wondering what an image may look like. By providing a brief description of the image, all the readers may enjoy Wyatt’s posts. 

Post-surgery Update

Wyatt made it out of surgery in record time today. He was a good patient, stunned his surgical team, and wowed the anesthesiologists. 

{pre-op fun, rolling around and being silly}

He went back for surgery around 7:45, procedure officially began at 8:15, and he was out by 11:15. Not too shabby, since they blocked off 6 hours for it all. 

His scopes went well, and pulmonology commented that things looked way better than they expected when they got into his lungs. His airway looked good, his adenoids looked huge, his tonsils looked good, and his lungs looked good. ENT made a game time decision and decided since his tonsils looked good on examination and on scopes, he would keep them intact. The biggest factor for this was recovery and since he hadn’t had any issues, we chose the conservative route. 

His hearing test didn’t go as we had hoped (even though we secretly knew..) and it came back as moderate hearing loss. The good news is they did the molds for hearing aids, since that can be difficult to do when awake. We will speak with the audiologist soon to develop the plan, but ENT felt confident in saying that the hearing aid we have wasn’t sufficient (we knew this also) and traditional over the ear aids would be appropriate. This kid is going to be a bionic kid soon— hearing aids, boots, feeding tube. 

Urology did their procedure and it went well, too. 

He transitioned from the OR to the PICU in order to recover, as we know he doesn’t recover well and the team wanted to be sure we could work on BiPAP settings and wanted to be sure he continued breathing well following all the tubes and scopes. 

{first few minutes post-op in the PICU}

He was quickly weaned off oxygen and is breathing room air currently. Even asleep. As in, no desats. This. Is. Huge. 

We had some snuggles and nap, and he even opened his eyes for a few minutes. No laughs or smiles, but I suspect we all may feel a little gross following surgery. 

He’s now resting comfortably, even in between pokes and prods from the nurse. He’s been having some bradycardia episodes (low heart rate) but the team isn’t concerned yet, as it’s somewhat common following anesthesia. We will monitor overnight and consult again in the am. 

Tonight they are dropping down his BiPAP settings to a much more normal rate, as he was previously on settings for a grown man. The hope is we can get the settings down, maintain sats at home, and then do a repeat sleep study to see if we can reduce even more. 

We thank you for your continued prayers. This guy has a whole army of people rooting for him and we are so very thankful. 

Here’s to a restful (alarm free!) night for all of us. 

Just a Boy, Doing His Thing...

This evening, while reading to Wyatt, I was reflecting on where we were in this season of his journey. I realized how many things in our day were pretty typical for a two year old. 

We read books, sometimes they get read correctly and sometimes they get read upside down or while trying to quickly read a page before he turns it to the next one. 

And sometimes, we have temper tantrums in the middle of the book because the dog walked by and licked him, which caused him to drop the book. 

We have moments of pure happiness, while getting ready for our day. We play. We try to put anything that’s near us in our mouths. We test boundaries and test then again to see if adults really mean it. 

Sometimes we throw temper tantrums for no good reason. At least, that’s how it feels to Mom. 

We also take some time to snuggle with mom and take a nap. 

We also act like a toddler during spring photos and refuse to smile. (Note: this is NOT the outfit we had planned for photos! A very unfortunate diaper mishap created this look...)

But we also take really great family photos, too. 

Spring photos: Golden Moments Photography

Life is pretty darn awesome for a two year old. 

Things have been pretty quiet around here, which is a good thing! We are gearing up for surgery next week and doing our best to keep Wyatt healthy. Surgery is scheduled for May 14th. Cross your fingers for continued health and a successful surgery. 

Full disclosure: I also wrestled him into a car seat today, listened to him scream for an entire car ride, got a toy thrown at me, wrangled him while he was rolling away without clothes on, and wrestled him to close his diaper. There is no photographic evidence of those things... But I also got a sloppy kiss, lots of laughter, and a boy who is on a mission to assert some independence.