Those Little Things...

... they're huge. 

See this collection of photos? Notice something they all have in common? 

 

Any guesses? 

Give up? 

He's looking at me. He's LOOKING at me. He sees me. This is huge. You know that whole visual impairment and those pesky developmental delays? He's making strides. This guy is so engaged visually in the world around him, which is something that's relatively new. When you hold him, he looks at you. He sees you. When he's rolling, he's rolling to get a toy he sees. He's reaching for small objects. He follows the dogs when they walk near him. If you're holding him, he cranes his neck to look at you or at someone else in the room. 

This is huge.

We don't take milestones for granted around these parts, so we had a bit of a dance party this evening to celebrate that I actually captured it on camera. We have been noticing it for a little while, here and there, but seeing it as I scrolled through photos was quite a celebration. 

He has another new trick up his sleeve, but I'm trying to figure out how to share a video on blogger. 

In other news, Wyatt is going to be famous. He (and I) were interviewed today for a promotional video for the Children's Center. It was pretty cool to be treated like VIP's and to be at the hospital for a purpose other than an ER or doctor visit. For once Wyatt wasn't a patient (which was glaringly obvious because my hair and makeup were done and I wasn't gripping my coffee begging someone to invent a way to give coffee through an IV) and we saw the hospital through a different lens today. It was refreshing. When we get the video and the photos, I'll be sure and share if we are allowed. 

Wyatt has a follow up with the pediatrician this week, so hope for some weight gain (but not too much, you know those specialists don't like plump kiddos... something about breathing safely?) and continued discussion about fever management for potential fevers. 

Back To Reality

We made it back to Maryland safely, with no additional "adventures". Since his febrile seizure, he has shown no signs of seizure activity and his neurologist feels comfortable waiting to see him until his next appointment, which is in 2018, since the seizure was related to a fever. This is good news. You always want to hear a doctor say, "Nope, no reason to see you for another year!" 

While we were in Michigan, we had such a great time visiting with family. We had grand plans of making a few day trips and a date night, but after the drama from Monday night, mom and dad just didn't feel comfortable leaving him with anyone. So we spent time in Nana's pool, playing, and hanging with family. It was just what we all needed! 

I snapped a few photos of my "nieces" hanging out with Wyatt and I've decided they are pretty much the cutest models you've ever seen. 

This photo cracks me up because Stella (middle) was just telling Wyatt that her sister, Charlie, wasn't listening to her. And, he rolled away from her. She was totally not impressed with their listening skills. 

Love is this. Right here. The laughter, love, (and baby scowl!), make my heart melt into a puddle. 

All three looking! 

Stella LOVES baby Wyatt. 

We will continue to hope for no fevers and no seizures! As we begin to start thinking about back to school, we also hope for minimal germs. Wyatt doesn't fight illness like other kids. Back to school means mommy is exposed to lots of other kids, which is lots of germs. While he has shown us he is a fighter, we would much prefer to minimize the risk, as much as possible. 

Vacation Adventures

I would love to fill this post with photos like this one...

On the shore of Lake Michigan. Unfortunately, we had a bit of a different adventure last night that ended with a stay in the PICU at a local hospital in Michigan. 

Yesterday, Wyatt was a little "off". My mom radar (Spidey Sense?) was going off and I was concerned that maybe he was coming down with something. We listened to his lungs and heard some wheezing, so I called our nurse back home and asked for her suggestion. Our choices were limited since we weren't at home and it was 7pm. I debated about taking him to an urgent care facility to get an X-ray to see if he had any pneumonia or something else going on in his lungs. We also took his temp, which was only 99.4. For him that's a little warmer than normal, so we gave some Motrin and got him ready for bed. He was extra fussy and just not himself, but we were trying to avoid an ER visit since it's not our normal Hopkins peeps who know him. 

Fast forward a few hours later, around 9:15, and we heard him cough an unusual cough. My Spidey Sense was on high alert and we chose to grab him out of bed to assess the situation and take his temp. I took him off BiPAP to hold him and get his temp. His temp had risen to 103.6, after a dose of Motrin. We knew we needed to have him seen. I was getting ready to set him down to change my clothes (hello, pajamas) and pack up our hospital bag. As I was doing that, he began to have a seizure. It was very alarming, as he shook in my arms and turned a nasty shade of gray. Thank goodness Brian is much calmer in emergency situations and his first responder training kicked in. He told my mom to call 911 and we sprung into action to attempt intervention. Brian was beginning chest compressions and we threw on BiPAP since it would force air into his lungs for us. 

Not even 4 minutes later, the first set of responders showed up. Thank goodness for growing up in a small town, as the first two people who showed up were people we knew. They got him stable and took over while the rest of the crew, including multiple ambulances and fire trucks showed up and assisted. We got him set up and transported him to the local ER. 

He had a febrile seizure, which is a seizure from a high fever. Likely it has nothing to do with epilepsy/neurological complications, and was simply the result of a high fever. They chose to admit him since he's a complicated case and wanted to speak to his team at Hopkins. Our pulmonologist happened to be on call so she walked them through his typical care plan and we were admitted into the PICU. He slept comfortably and we were discharged this afternoon. His fever is likely the result of a virus and he needs to fight it. We will continue to keep him comfortable with fever meds and will monitor for any additional signs of seizures. Our follow up will be with our team back home. For now we will continue vacation here and just take it easy. Someone has to float in the pool and soak up the sun! 

Resting easy in the PICU. As you can see he was very comfortable! 

His afternoon has consisted of lots of snuggles from his grandmas and a nice nap in his Nana's arms. 

We remain hopeful that he can continue to fight the virus at home (well, Nana's home) with no additional seizures. We welcome your prayers for a full recovery and a smooth rest of vacation. 

Lately...

Just stopping in to say hello, leave a few pictures, and catch you all up on what's been happening around here. 

Wyatt has been trying some more new foods, including puffs. He doesn't love feeding himself, except when they fall out of his mouth. He gets a little angry about it and forces it back in his mouth. We have started playing around with location of food on his try to see if putting it on an angle, closer to him (it's on a large binder here) will help put it in his field of vision to help him see it better. Since food really is just for fun because all of his calories are fed through his tube, we are able to try and manipulate his environment a little and experiment with placement. We are noticing, though, we can only experiment with things other than avocado... he loves avocado too much to mess around with it. Haha. 

Last weekend we went to the Food Truck Festival, which was at a local FarmPark. We looked at the animals and then ate our way through the festival. Wyatt got some up close and personal time with some animals and laughed hysterically when the sheep licked his toe. Daddy had to lift up the stroller so Wyatt could see the pigs. 

The boys playing while we waited for our friends to arrive! 

Wyatt had pool therapy this week and is really making progress in the pool. He's always a little hesitant when he starts, but warms up quickly. He is working on weight bearing and sitting in the pool. The hope is with less weight when he's in the pool, he can strengthen some of his muscles. His low tone causes a lot of challenges for him, so the water can remove some of those barriers and we can help him work on things differently than when he is out of the water. 

He continues PT 2-3 times a week and he is typically less than thrilled about it. His therapists make him work and he's often vocal about his displeasure. Thankfully we know it's often just voicing his annoyance (no tears...) and not pain. 

Today he did great at PT and even smiled at one point! 

We have a GI and pulmonology appointment next week, so cross your fingers and toes for some added ounces and the green light from GI to try some new food textures. Pulmonology is just a follow up from the sleep study & a check up to make sure he's doing well from a respiratory standpoint.