Therapy CAN be Fun...

Our favorite blonde boy started physical therapy this week with a local therapy center. He has been receiving twice monthly physical therapy through Infants & Toddlers, but we know that as he's growing he has some additional needs, including potentially requiring adaptive equipment. Because of this, we chose to get private PT in addition to Infants & Toddlers. 

He had his first session on Monday. He did okay, but homeboy gets a little frustrated when his PT wants him to work a little harder than he wants to work. I was an anxious (helicopter?) parent and it took all of my energy to not put my foot down and say, "Stop making my baby cry!" It is a bit torturous to sit back and watch someone push your kid to tears. But since I'm learning to sit back (ha!) and relax, I persevered. So did he. And everyone was fine. 

Today we got a call that there was an opening for the aquatic therapy, which was awesome since we were told it's a 1 year waiting list. I can't decide if it's because he is in desperate need of therapy, or if we just got lucky and the stars aligned. Regardless, he had his first aquatic therapy session and he did well. 

 

Kicking his feet with Ms. Sarah. 

 

"Okay lady, I'm tolerating this pool but what I really want is your fingers. Or your watch."

 

"Mom! Stop! You're embarrassing me!"

It's been a big week around here in addition to therapy. Wyatt had his first overnight slumber party at Ms. Roxanne's house. He got to party with Bray and Addie, and of course loved every minute of it. In fact, he had so much fun he woke up at 1 am to continue the party! Mommy was a little anxious since it was her first time staying away from him overnight, other than a hospital stay, but our guy rocked it. Ms. Roxanne said he passed the test and can come back again sometime. 

And just a few fun photos of bath time tonight...

 

  

Growing as Parents

Last night when I couldn't sleep (it's a common theme in our house...), I began scrolling through older photos of Wyatt in his first days and weeks of life. Photos that made me feel a variety of feelings, because in those first days and weeks of life, it was a rollercoaster of emotions. There was pure joy seeing this face... 

I mean, if that photo doesn't make you giggle, I'm afraid you don't have a heart. Or a sense of humor. 

 

Then there's this photo. What you can't see in this photo is the reason he's not in his clothes. The reasons his leg looks so bad. And those feelings are scary. You see, he isn't in his clothes because things got a little dicey for a bit and the team felt like they needed to be sure they could access him quickly if something happened. He's on oxygen and we were debating about CPAP. The blood on his leg is because the team had a really hard time placing his central line (if only we knew this was a sign-- kid is a HARD stick!). 

 

This photo is the one that really got me thinking. This is not long after he had his tongue tie revision completed. It was a laser snip, completed by an ENT. I had to leave the room because I was so scared. I couldn't watch my baby be in pain and not do anything to help. And while I knew it was required for him to eat successfully, my brain couldn't trump my heart. I had to leave. 

 

This photo was after his gtube surgery. He's intubated (machine is breathing for him) and I couldn't leave his side. Later this hospital stay, we learned that he continued to be a hard stick for an IV, so the scalp IV is the easiest one to place for him because the skin is so thin and his veins are easy to see. It's also less likely to get pulled by a curious little one or burst because of so much movement. Now? We immediately tell nurses to go straight for his scalp because it's not worth digging around for a while in his arms. We also burrito wrap him, hold him down, and hand nurses supplies. 

I've replaced a gtube after multiple nurses couldn't replace it. 

But, I couldn't stay in the room for a 30 second (maybe even less!) procedure when he was 12 days old. 

Now I refuse to leave his side, unless they make me. We need to be there for our son. We need to be brave for him. We also have to advocate for things, even if they are difficult to see. 

This guy isn't the only one who had grown. We have grown as parents. In ways we never would have imagined. And while I know every parent grows as parents as their children age, or experience new things, I can't help but think that we have done a lot of growing in a little bit of time. He's gone through multiple surgeries, hospital stays, some scary times... 

And he's still fighting. We are brave because he's a warrior. 

(For the record, scalp IV placement is still really freaky, but it's less so now) 

....Just Because....

Photo dump, just because he's so cute. Not that I am biased. He's pretty much the cutest kid you'll ever meet. 

 

I wish I was this happy when I woke up! 

 

You'll notice he is awfully comfortable. I still can't figure out how that afghan found its way in the crib. It was hanging at the end of the bed... 

Sometimes he just likes to chill with his feet up, relaxed, chewing on a bell. 

 

"You're feeding me what?"  

As far as updates, I'm happy to report that things are relatively calm around here! (Knock on wood!) 

We have a bunch of follow up appointments in the next couple of weeks, including a follow up with Audiology, endocrine, GI, and pulmonology. We also need to sneak in a visit with ENT, but we need some additional guidance from the other specialty groups so we are holding off on scheduling until we get some clarification. We also have the dreaded sleep study in August. I'll provide more information about this in an upcoming post about sleep apnea. 

Other big news around here: Wyatt starts private PT next week. We are hopeful that PT combined with some adaptive equipment, combined with our Infants and Toddlers services (through the school system), will help our guy make even more continued progress. 

Thank you for continuing to follow us on our journey with Wyatt! 

....Just Because....

Photo dump, just because he's so cute. Not that I am biased. He's pretty much the cutest kid you'll ever meet. 

 

I wish I was this happy when I woke up! 

 

You'll notice he is awfully comfortable. I still can't figure out how that afghan found its way in the crib. It was hanging at the end of the bed... 

Sometimes he just likes to chill with his feet up, relaxed, chewing on a bell. 

 

"You're feeding me what?"  

As far as updates, I'm happy to report that things are relatively calm around here! (Knock on wood!) 

We have a bunch of follow up appointments in the next couple of weeks, including a follow up with Audiology, endocrine, GI, and pulmonology. We also need to sneak in a visit with ENT, but we need some additional guidance from the other specialty groups so we are holding off on scheduling until we get some clarification. We also have the dreaded sleep study in August. I'll provide more information about this in an upcoming post about sleep apnea. 

Other big news around here: Wyatt starts private PT next week. We are hopeful that PT combined with some adaptive equipment, combined with our Infants and Toddlers services (through the school system), will help our guy make even more continued progress. 

Thank you for continuing to follow us on our journey with Wyatt! 

We Made It!

You guys! 

It's shocking! 

 

We made it through a high fever, caused by a viral infection, without an ER trip or a hospital stay. This is huge. If you would've asked me 6 weeks ago if I thought we could reach this milestone, I would have laughed. No chance. 

I know. I know. I have to stop doubting our little fighter. But history has shown us that he just doesn't always have the energy to fight a virus on his own. This time? HE DID IT! 

We may have gone to the pediatrician three times, but we never had to go to the ER and we never even spoke of a possible admission. This is huge. We will continue to cross our fingers and toes that he keeps this up for the foreseeable future. 

He is starting to show interest in crawling. He's moving his legs like crazy when he's on his stomach, we just have to get his neck and core stronger. In no time I'll be chasing the little bugger (and his pump backpack!) all through the house. Until then, we will continue to laugh, encourage, and watch him grow.  

He's also starting to eat food again. He's always been "approved" to eat puréed foods, but the risk of aspiration was always there and during cold and flu season we didn't want to push our luck. But with things trending in the right direction, we started back up with foods again. 

 

As you can see, he's thrilled. This particular meal ended with a bath and I bet you can see why. He had carrots in his hair, between his toes, and even on his diaper. And yes, mom fail, he wasn't in a bib. I was planning on not letting him help, but looked away for a second to see the dog and he stuck his hand in the babyfood, tipped it over, and grabbed the spoon. Silly (messy) guy. 

Fever...

Yup. Fever struck at our house yesterday. Given Wyatt's history and the complex nature of his needs, we have to be extra cautious. So we took him in, hoping for some answers. In typical Wyatt fashion, answers didn't happen. 

 

Look at those rosy cheeks. Poor guy. Fevers are NO fun! 

Urinalysis looked good. Ears looked good. No other obvious symptoms. So, it's likely a virus. Hoping for nothin serious like hand, foot, mouth, but it's going around locally, so it's likely. At this time, no blisters but his throat is a little red. He's napping now and has been generally happy today, but had a rough night last night-- cranky, didn't sleep well. 

Cross your fingers we fight this virus at HOME. While we love our friends at Hopkins, we prefer to spend time at home. 

Teething...Still

Kids get teeth. I know this. It's just really no fun when you're getting 5 at once. Most days he's a pretty chill guy. But lately he's sort of being a toddler. Totally normal toddler behavior to be happy one minute and mad the next because someone looked at you, or you dropped a toy. 

It's just that, well, we've never dealt with normal. And his normal includes not being able to move his body like a normal kiddo. Instead of chasing after the toy he dropped, he screams for me to do it. And like any good behavior specialist (that's my day job) I totally reinforce the behavior (if you're not in the "know" I'm using sarcasm... you don't ever want to reinforce negative behavior) by getting the toy or picking him up. Turns out, I'm human. And he's pretty darn cute so it's reeeeeeeeally hard not to do that. 

 

I mean, how could you say no to this face?! 

 

Or this face?! 

Our days have been pretty quiet, and our nights have been pretty, well, not quiet. Thankfully his daddy is a saint and takes the night shift anytime he can, so he gets to "bond" with Wyatt in the middle of the night. 

Actual conversation this week:

Mommy: Wow! Listen to him chat away. Listen to all those consonant sounds! He sounds great! 

Daddy: yeah, I would rather listen to those sounds when the sun is up. 

Mommy: oh, right. 

At least he's happy when he's awake at 3 am? 

No big news around here, which is a welcome change since the last 6 months have been a flurry of hospital visits, color changes, and ER visits. We will take quiet! Cross those fingers and toes that he keeps this up AND stops waking up for parties at 3 am (unless daddy has night shift, then he can party whenever he wants! I kid..I kid!) 

There's always a fine line...

When you have a kiddo with chronic lung disease who also seems to be a medical mystery, coupled with "typical" kid stuff (read: teething. It's a bear), you have to balance, well, life. You see, Wyatt doesn't always present with normal indicators of illness. He's had pneumonia twice and never spiked a fever. He's also turned blue for no apparent reason. So, I often have to rely on my mom gut and the medical professionals to help sort things out for us because there's a fine line between things are cool and things are not cool. That fine line could be an emergency really quickly and we have to be on top of things in case it gets bad. 

This morning he sounded a little coarse. Which means things are junky when he breathes. It sort of makes sense because his nose is a darn faucet these days because of teeth and maybe a cold, or allergies, or any combination of things. So I trusted my mom gut and got him in to be seen at the pediatricians office. 

The verdict is, we will wait and see. His lungs sound clear but his upper airway sounds terrible, likely from the stuffy nose. Right now we can't really treat anything unless we toss in an antibiotic, except if it's viral, that antibiotic won't do anything and if it does develop into pneumonia, he will need another course of antibiotics and a steroid. So... the real verdict is, this mama needs to go to med school so I can differentiate between upper airway and lungs. Or at least take an anatomy class? In my spare time, of course. 

Here's our favorite blonde, hanging out, being cute. 

 

Oh and, those teeth? They can go bite themselves because teething sucks. Just ask Wyatt. 

Next Steps

This guy has something to tell you!

 

NO TRACH FOR ME! (At least for now)

Appointment went well. We are going to continue to monitor him and play with BiPAP settings. They were very happy to see how active and mobile he is, which gives us hope that he will overcome this with some time. We will do a follow up sleep study in August to see how he is progressing. This is very encouraging! 

We now have two pulmonology doctors following him. His pulmonologist who has had him since we started with them is a fellow, which means she's still studying to be a specialist, so we will add an attending who is a sleep doctor. This is great news because attendings have a lot more "pull" in getting things authorized and tend to be more willing to try unique things. 

Additionally, we have found out that there are quite a few policies and procedures that have been changed because of Wyatt. This is a good thing for us, as some of the policies were not working in our favor. At Wyatt's next sleep study he will have a respiratory therapist there who will adjust his BiPAP, as the sleep team uses a different machine which may not give us a good picture of how he does on his own machine. During the next sleep study all information during the study, or if anything happens, they will call his sleep doc and not the on call doctor. This will help with continuity of care. 

All in all, this is encouraging news. We continue to be hopeful that he's on a good path. 

5/23

Looks like someone has a case of the Tuesdays....

 

I took him off BiPAP and turned on the light and got this. I swear he's already a teenager. Little guy rolled over and covered his face. Punk. 

I'm pretty sure he was saying, "Nah. I don't want to get up today. Thanks." I feel his pain. I didn't want to face Tuesday either. But we did. And we killed Tuesday. 

Tomorrow is a big day. We meet with his pulmonology team to discuss next steps. We are hopeful that we walk away with a clear understanding of the results of his sleep study, as well as next steps. I anticipate there will be lots of questions, but that's been the story of his life so far. That kid, he's a conundrum. 

On a brighter note, he is really doing great with his rolling and sitting. He is rolling for a purpose and is determined to roll to grab a toy, or roll to grab a dog. I'll let you guess which one is more exciting for him (and the four legged friends). It's a really good thing we have tolerant pups. I mean, Duke is fairly convinced Wyatt is his baby. So it works. Wyatt is also showing improvements in his vision and is tracking people when they come in a room, or when someone walks by him. It caught me off guard when I went into his room when I thought he was falling asleep and he looked me straight in the eye and gave me a mischievous grin. He knew I was there and knew he was supposed to be sleeping. Stinker. Good thing he's cute. 

We would love positive vibes and prayers for a constructive appointment tomorrow, filled with a plan for Wyatt's care. 

 

(See what I mean about mischievous?)

Update

I spoke with Wyatt's pulmonologist last night about the results of his sleep study. He did not do well. Apparently there was conversation with the sleep lab and the pulm team about sending him to the ER during the study, but I wasn't privy to that information during the study (which, by the way, is super annoying). 

 

What does this mean? We have to determine the best way to treat his sleep apnea. It is either with high BiPAP settings or with a tracheostomy. We are waiting to get in with one of the sleep doctors to talk about next steps. I am hopeful with some time to process and after speaking with the sleep doctor, we will have some clarity. 

This wasn't the news we were hoping for, but it's Wyatt's reality and we will work through it. 

 

An Unusual Journey...

On the eve of my 2nd Mother's Day, I'm taking some time to reflect on my journey to motherhood and the adventure so far. 

I want to first take a moment to thank this guy...

 You know, the star of this blog. I want to thank him for making me a mom. I longed for this title for as long as I can remember and I can't think of a better guy to give me this title. 

 

There is no doubt in my mind how much I love this kid. I know I referenced it previously in the post titled, Love. And all of that still holds true. 

 

We started off a little bumpy. A NICU stay. A feeding tube. Oxygen. Lots of doctors. Leaving our son behind, while we went home. Scary days and nights. A surprise transfer to a new hospital. Going home with a bitty baby. 

Doctors appointments. Diagnosis. Another one. Still some more. More appointments. ER visits. Hospital stays. Surgeries. More ER visits. More hospital stays. Another surgery. A feeding tube. Oxygen. Sleep study. BiPAP. A new feeding tube. More appointments. Unknown future. 

It's a lot for a little guy (and his family!). But, I wouldn't trade it for the world. 

You see, this guy made me a mom. He's worth every worry, every diagnosis, every sleepless night, every beep, everything. He's worth it. He made me a mom. 

This journey has been rocky, to say the least. It's been an unusual journey full of twists in the road. A new destination. A surprise road trip (to Hopkins, of course). It's VERY different than the journey I imagined. But through it all, this kid has defied odds and he still calls me mom. 

(You'll have to excuse me... typing through tears is difficult...)

Being a mom is hard. Being a mom of a child with special needs is hard. Every mom has their own journey, mine is just a little unusual and full of surprises along the way. There are hard days (we all have them!). There are good days and bad days. There are more hospital stays, more doctors appointments, more to be written in our journey. But I'm lucky. His story is still being written. 

 

So today, on this Mother's Day eve, I reflect on how lucky I am to be chosen to be a mom. To be Wyatt's mom. Thank you, Wyatt, for choosing me to be your mother. Your teacher. Your cheerleader. Your advocate. Your strength. 

I'm one lucky mama. 

Mommy & Me

On Friday we had the pleasure of working with a local photographer to take some Mommy & Me photos. To say they are amazing would be an understatement. Truly. Claire from Golden Moments Photography  captured Wyatt's personality so beautifully. I may have shed a few tears looking at these. Okay, it was more than a few. 

 

    

One thing that struck me with these photos is our baby Wyatt isn't much of a baby anymore. But I'm his mother, I can still call him baby Wyatt if I want. Right? I birthed the kid. I call the shots. 

We have a big week coming up this week. Wednesday is the sleep study AND daddy will be gone Tuesday-Friday. Rumor has it his parents will be here. And we are so pumped! Listen, if you don't have amazing inlaws, go and get yourself some right now. I mean, they are coming to visit while their son is gone because they want to help me. I'm sure the little man has something to do with the visit too. 

In all seriousness, Wednesday night is a pretty big night for us. We will titrate Wyatt's BiPAP. That means we will look for the best setting for his machine. If he requires settings beyond what can safely be done, he will need a tracheostomy. While we continue to pray that Wyatt tells us exactly what he needs, there is a really big part of me hoping the trach isn't what he needs. I'm hopeful to have answers on Thursday morning and will try and update here for anyone who may be curious. 

Here's to a fantastic week!