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. 

*Official* Sleep Study 3.0 Results

This afternoon we got *official* sleep study results. We were shocked we got them back so quickly, and when the pulmonology phone number showed up, there was a moment of panic. If we have learned anything on this journey, it's that you don't want results back sooner than expected. That usually means things went awry, and the doctors need to get you in quickly for an intervention. 

The doctor started off the conversation asking me how I thought it went. Seriously? Just tell me the results. I thought it was fine. The RT (Respiratory Therapist) winked at me. He didn't have any episodes. There was no hospital trip. I thought it was fine.  But nobody pays me to interpret sleep studies, so tell me the real answer, lady. 

The short answer? 

No trach for this guy! He did well, he remained within his allowable settings, and had no episodes. The doctor did share his oxygen saturations looked good! This is excellent news. His CO2 levels were a little high, but it could be explained by the monitoring (it is not done as a veinous blood gas, which is the most reliable measure, but not feasible during the study). The doctor did point out that he's still on a very high level that does come with risks, like a pneumothorax, which is a collapsed lung, but the results of the study are very reassuring that the interventions we have in place are doing what they should be doing. For that we are grateful. 

We will follow up in clinic in two weeks to discuss next steps, which likely will include asking ENT to scope him to see if there are any structural or anatomical reasons for the obstruction when he sleeps. From there we will know if there will be any additional interventions. 

For now, though, we will take a deep breath and celebrate this news. This kid, he never ceases to amaze us. 

Beach Baby

Wyatt and his mama are spending some time in the Outer Banks of North Carolina! We are crashing with my friend Meghan's family. It was a sort of last minute decision and we packed the car and drove down here. Wyatt did well for most of the drive, minus an unfortunate diaper incident. Yuck. 

All loaded up and ready to hit the road! 

We hit the beach yesterday and realized pretty quickly that Wyatt is a beach baby. He loved the breeze and the sand between his toes. He even took a pretty great nap on the beach. 

We even went to the pool!

What a great day in the Outer Banks! 

Sleep Update... Sort of

This guy? He nailed that sleep study. We do NOT have *official* results, but my impression was he killed it. He didn't have any episodes (desaturations, high CO2, or blue spells) and they only had to increase his setting by 1. He was allowed to increase up to 24 and we started at 22, so he was in the allowable range. If he had to go higher than 24, the doctor would have been called and I suspect we would've been sent to the ER. 

BUT! That didn't happen. 

The sleep techs can't give you any information, which is suuuuuuuper frustrating, but the Respiratory Therapist did say he slept well and gave me a wink. I think she's definitely on Team Wyatt. 

This was after we got home. Check out that wild hair from the electrodes. Although, who am I kidding? His hair is always wild. This was just wild with gunk in it. 

Thank you so much for your kind words, prayers, and ALWAYS being on Team Wyatt. As soon as we get the official report, I'll be sure and let you all know. 

Big Week

Due to some scheduling changes, Wyatt's sleep study has been moved to this week. Wednesday. As in, right around the corner. 

Because this is our last study before a decision about a trach is made, we are a little (nope, a lot) anxious. While we know a trach isn't the end of the world, and we will do everything we can if it means his quality of life is improved, it's still a really really big change for him. 

(Yes, still teething. Now it's the upper teeth. Sigh.)

We would appreciate any thoughts and prayers you can toss our way this week! 

New Look!

You guys! Wyatt's blog got a little facelift. We changed the name to match his Facebook page, Love Wyatt, and gave it a cleaner look that can grow with him.

Note: The title of the blog and his Facebook page does not have a comma for a reason. It is not a typo. Promise. 

Wyatt's home nurse came today and I'm pretty sure it's the first time we didn't have any real concerns. He gained 2.5 ounces in the last week, which makes me one happy mama. Since birth, we had to work hard for every single ounce. Every time a scale came out, I had mini panic attacks because he had a heck of a time gaining weight, and I just knew a tube was on the horizon. That spidey sense is strong for this mama. I just had the timeline a little off, oh well. Anyway, the weight checks were rough. 

Once he got the feeding tube, he gained weight a little too fast. We had to be mindful of his feeds, make some adjustments, and get him to slow down his weight gain. As the ENT reminded us, chubby babies who have extra rolls on their chins are cute, but they can't breathe so well. So we slowed him way down and watched what happened. Then we increased calories a bit and he's very slowly gained weight. Like .5 ounce a week. If any. You can imagine I was a little anxious about that, since every weigh in is a little bit like PTSD for me. 

This was back in the chunky phase... look at those chins. 

But he's gaining or maintaining, so we keep on keepin' on, folks. 

Updates for appointments this week: we continue with private physical therapy (PT) 2-3 times a week this week, OT at the house, and audiology appointment on Friday afternoon. I'll be very curious to see what she has to say about his hearing. Cross your fingers and toes for good news! 

The Growth Hormone Debate

If you saw my post on Love Wyatt this afternoon, you know we had an endocrine appointment today. I posted about crossing fingers and toes for good growth or we would have to explore growth hormone. I also promised to explain more, so here I am. 

(But first... cute WyGuy photo!)

Part of Optic Nerve Hypoplasia is issues with hormones like thyroid, cortisol, and pituitary dysfunction. This is because the optic nerves are right around the pituitary which is your master gland. I can only assume they develop around the same time in utero. Because your pituitary gland does an awful lot for your body, if it doesn't function right, it can make things go poorly. Wyatt has been fortunate that his pituitary gland is fully developed, and so far appears to be doing its job. Many kids with ONH have difficulties with growth. Wyatt is one of them. Lengthwise, he hasn't grown a whole lot (and he started out short to begin with) and there is some cause for concern. Growth hormone isn't just for growing tall, it's also important for development. 

Wyatt has had a lot of blood work to see what's going on with his levels and his thyroid levels have consistently been borderline, which is a little tricky to understand because most of the values are based on adults, not kids, so it's difficult to determine what is "normal" for a young child, but we do know his values are borderline. As a result, our endocrinologist wanted to try intervening with thyroid meds to see if that might kick start his thyroid, which could also contribute to slow growth. So we started with synthroid (synthetic thyroid hormone) in January to see if it has an impact. 

Unfortunately, he didn't grow much since our last visit. The other unfortunate part is the lab never sent the April labs to the endocrinologist, so we didn't even really know if his thyroid levels are stable or if they are still low, which could mean we need to increase to see an impact with growth. It also could mean he's not really hypothyroid, so the synthroid isn't doing anything. 

All that to say, we don't really have any answers. I'd love to say I'm shocked, but our guy is truly a medical mystery, so it's pretty much on trend for him. 

We are going to get the lab results, then make adjustments to synthroid if need be. We will retest him in 2 months, readjust if need, test again, then return in 6 months. At that point we will complete a growth stimulation test which involves lots of blood draws, some injections, and lots of interpretation. 

If he is truly growth hormone deficient, that test will tell us. His last growth test was not remarkable, so the other thought could be he's just a short guy. Which could make sense, as Brian's side of the family isn't tall. The drawback to growth hormone is that it's injections. Daily. For years. So you can imagine that we are cautious about jumping into an intervention without first exploring all other options. 

So... another appointment with zero answers, but we have next steps so I can accept the no answers as long as we have a plan. 

What? This isn't how you eat avocado? Weird. 

Seeing it Through His Eyes...

Since receiving Wyatt's diagnosis, I have often wondered exactly what he can and cannot see. I hate that every doctor we speak with tells us that we won't know what his vision is until he can tell us. I've longed to know just what he sees. How he sees it. I've wished I could see through his eyes. 

Last night I did. Last night was magical. 

It's blurry. But it's perfect. It captures the movement and joy he experienced last night watching the fireworks. This is his response after he saw (and heard!) his first firework. 

I'll let that sink in...

He saw. He watched. The kid with a visual impairment SAW the fireworks. 

He heard. He listened. The kid with a hearing impairment HEARD the fireworks. 

He cheered when it was all finished. 

Last night was magical for a variety of reasons, but mainly because I was able to see the fireworks through his eyes. His perspective. They were magical to him. The sound startled him at first, he jumped, but then he saw the sky light up and he smiled. He laughed. He clapped. And when the finished, he laughed the whole walk home. It was truly magical for him and for me. 

Seeing the 4th of July fireworks through his eyes, his joy, his excitement, was pretty amazing. 

*Special thanks to Meghan, who swears I'm only friends with her because she lives in Baltimore (hello close to Hopkins! Hello good food! Hello fireworks we can walk to!), for letting us crash at her place last night AND for capturing these special moments. 

Also, just so there isn't any confusion-- Wyatt has some vision and some hearing. He isn't completely blind and he isn't profoundly deaf, but both his hearing and vision are impaired, which still makes yesterday amazing. 

A Little Gas... a Lot of Trouble

Because Wyatt is tube fed, it means he receives all of his nutrition through his feeding tube. In addition to his feeding tube, he had a Nissen Fundoplication (often referred to as a fundo) completed as well. A fundo is an intensive intervention to treat gastroesophageal reflux disease (GERD). The procedure involves the upper part of the stomach being wrapped around the lower end of the esophagus, reinforcing the lower esophageal sphincter. In non/medical terms, it means part of his stomach is wrapped around his esophagus. It prevents the reflux from going into his esophagus and causing additional pain. It also means he can't burp or vomit. Although there have been many people who have blown through their fundo because their reflux is that bad. Wyatt's surgeon told us to be sure he doesn't party too hard on his 21st bday or he will end up getting his stomach pumped. I may or may not have cheered inside hearing that because that means I can give him a medical reason to never drink in excess. Mom win. 

This kid is gassy, though. Since he can't burp on his own, we have to assist him with it. That's called venting his g. It involves putting a large syringe in his g port and opening the port. The air bubbles will come through and essentially we've burped him. The funny thing is, it sounds like a burp and I have a really crude sense of humor and giggle every single time. Wyatt does too, but I can't tell if it's because he is getting relief or if he thinks burps are funny too. 

The other hard part with Wyatt's feeding is that he's actually not fed into his stomach, he's fed into his jejunum which is in the small intestines. So if the problem is that far "down the line" we can't burp him, he has to release it from the bowel. Again. This kid is gassy. So sometimes we can't give him relief and he's sort of miserable until he can get it out in his own. He also giggles at this. I do too. 

Here's a picture collage of before venting and after. 

He's miserable. We vent. He "burps". We laugh. He does too. Life is good again. 

Sometimes this process happens in the middle of the night and venting gets a little messy because stomach contents are flying and you're practically sleep venting, and well, it ends with the bed, kid, and sometimes adult covered in vented goodness. 

But he's relieved and so are we. 

I tell you this to share the medical side of Wyatt, too. His feeding tube literally saved his life and has played a huge part in the progress he's made, but it's not without consequences. He's attached to a feeding pump 20 hours a day, we have to time baths, swimming time, medicines, travel, etc around his feeds. But, he's growing and thriving. And happy as can be. 

As parents, we can't ask for much more. 

Say WHAT?!

We are at 68 days since our last hospital stay or ER visit. This is huge. That's the same number of days that we were in the hospital between November and May. 

To celebrate, Wyatt is currently having a party in his crib. I can't decide if I'm angry or not. The party is because he learned a new trick. He learned how to push up when he's on his stomach (like tummy clears the ground!) and then proceeds to fall a second later, which is suuuuuuuper fun in the crib since he sort of bounces. We hear squeals of delight every now and then because it's just so much fun to do this new trick. Way better than sleeping, in his mind (clearly he can't be my child... I'd choose sleep over fun any day) and so he does it repeatedly. It's quite a feat considering he has a face full of BiPAP mask, air blowing in his face, and tubing to work around. 

See that blur to the left of the tubing? Yup. That's Wyatt. In motion. Mid-roll, laughing at his poor mother who just wants to sleep. 

This afternoon he had some avocado. He ate it in a very unconventional way. I mean, I love me some avocado, but not nearly as much as he does. Kid was bouncing and doing yoga, while eating. But he loved every second of it. 

Side note: You'll notice he's in his bouncer, instead of his high chair. He had spent a fair amount of time sitting up and working his core prior to that, so we went back to the idea that food is fun and we are working on oral motor, so we removed the core workout, which is required of him when he's sitting up. These are all things we have to consider when we are working (and playing!) with him. We have to strike a balance between work and fun, but also focus on the major goal of the activity. Sometimes it's exhausting analyzing (over analyzing?) the activities we do each day, since Wyatt requires some modifications to his daily living.