EEG (no results, yet)

Today was EEG day. The EEG, electroencephalography, is a tool to monitor waves inside the brain. It records electrical activity within the brain and the hope is that it can record any abnormal events, if they occur. During the test, they wanted moments of being awake, asleep, and stimulated. 

The waiting was the hardest part today. I made a mistake with the time and we arrived super early, which meant extra time waiting. In case you didn’t know, two year olds aren’t the best at waiting. He took it like a champ and we got creative while trying to entertain him. Thankfully we were in a waiting room with mainly adults and they were all gushing over his hair and trying to entertain him with me. 

The EEG involves lots of electrodes attached to your head. The tech commented that his luscious locks would get messy, and she was right. They use some sticky stuff to attach the electrodes. It felt like we would get 4 attached and he would pull off or wiggle out of two. It was a process. Thankfully the tech was patient and didn’t seem to be bothered by his squirming and protesting. She also wasn’t bothered when he smacked her hand away. I was mortified. I know he’s two and we were really pushing his buttons, plus he lacks the ability to communicate his frustration, but it’s still embarrassing. 

We finally got him settled after wrestling with him and sweating bullets. He was pretty thrilled when we stopped touching him. 

They wanted him to sleep and I finally got him to take a little snooze. It took some creativity and I hope I never have to see the video (yes, they record the study) and the contortionist moves I had to do in order to get him to sleep. He slept, I laid next to him, and then it as time to wake him. With strobe lights. It seemed like torture to me, but he just laughed at it. 

The hope is the pediatric neurologist will review the study this evening and pass along the information/results to his neurologist. That information will be shared with us immediately if it’s urgent. If it’s not urgent, we will review at his follow up appointment. 

We aren’t 100% sure what we want the test to show. While we never want to hear bad results, it would give us answers for the staring spells we are witnessing and could help us determine next steps. It’s always strange to be hoping for a diagnosis, but we have found that a diagnosis can help bring some clarity. We have also found that often times some answers cause more questions. 

That, my friends, is why we love our boy. He’s unique. That’s for sure. 

Keep on Keepin’ on...

I know this isn’t a shock to you, but our little guy is pretty awesome. You see, we’ve had a rough couple of weeks. He’s fighting something and has had a few hiccups along the way. About 4 pediatrician visits, a phone call or two to the on call pulmonologist (can I get an amen for the poor doctors who have to take phone calls at all hours of the day and night?!), an antibiotic, another phone call to the on call pulmonologist, a steroid for good measure, and I think we might be on the mend. Cross your fingers and toes. 

Look at that face. We always know when he’s fighting something because his face gives it away. The bottom right picture is on day three of steroids. Always the worst day. Our nurse shared that steroids can make kids agitated or hyper. I think we realized which way it sends Wyatt. Pure agitation over here. ‘Roid rage is real, folks. 

Tonight he was much better after eating twice as much as normal and some extra snuggles with Mom. This was him when we were singing our goodnight song. 

That’s our happy boy!

He continues to love to roll and sit. Check out these videos. Please note, he finds the most unusual ways to do just about anything, as evidenced by the slightly awkward roll into sitting. 

But check out how long he sits now!

Before you ask, yes... this was at bedtime. It’s a common pattern in our house. We put him to bed, he thinks it’s playtime. Seriously, dude. 

We have an appointment with GI tomorrow to review his weight. He has been eating more real food recently and we are hoping the avocado and other foods are helping. I suspect we will add some calories to his feeds, as he hasn’t gained much weight since our last appointment. I’m also excited to share with them he has tried drinking orally. He attempted a straw and did well but has since refused since we have to help. We are now using a training sippy cup with a bottle nipple and he’s loving it. Doesn’t love when we help him (he is two, afterall..) but loves to try. That’s important. Lots of tube fed kids can become so frustrated with oral feeding that they refuse to do it. But our guy has some willpower and drive, so we will continue to expose him to oral feeding following his lead. 

In addition to GI this week, we will get an EEG done on Friday, as we are suspecting he is having absence seizures. He will stare off for 3-10 seconds at a time. Given the fact that he has a genetic “error” that includes a high likelihood for a seizure disorder, we knew it was important to reach out to his neurologist and share this information. She ordered an EEG stat and we got in for Friday afternoon. In all likelihood, the EEG won’t capture anything, just like when you take your car into be fixed and it doesn’t make the sound you’ve heard for days on end, but I suspect our neurologist will want to see him following the EEG and will treat as if he does have absence seizures. For those who are unfamiliar, absence seizures are also referred to as petit mal seizures. They are not the violent shaking episodes people think of with seizure disorders. These are seconds of staring off into space, or stopping in the middle of what you’re doing and then returning to whatever it was you were doing. We are hopeful this isn’t a sign of something more and that there is a plan for treatment. 

We appreciate your continued prayers for improved health during cold and flu season, as well as a good recommendation for nutrition tomorrow & encouraging results following the EEG. 

Here’s to a New Year

2017 was filled with some really high highs and some pretty low lows. We started off the year with what seemed like hospital stay after hospital stay and eventually the trios became less frequent. We established some solid care routines for Wyatt and grew in our ability to care for him from the comfort of our home. He became even more of a bionic boy, with the addition of his BiPAP and the switch from a G tube to a GJ tube. We added in his least favorite torture device, The Vest. He screamed his way through some grueling PT and pool therapy sessions. 

But you know what else we did? We laughed. A lot. 

We went to the beach, traveled to Pittsburgh & Michigan, we made new friends, we learned new tricks, we kept up with lifelong friendships, we celebrated big milestones and little ones, too. 

I can’t wait to see what 2018 has in store for our guy. Whatever it is, I know it will be awesome. 

We thank you for continuing to follow our journey. Many of you have laughed and cried along with us. We hope you will stick around, share our story, continue to pray for us, and most of all, we wish you happiness in 2018. 

Here’s to a great year. 

P.s.- as I write this, Wyatt is sleeping comfortably after a fever scare. He went from no fever to 101+ in less than an hour. Thankfully, no seizure! His temp has slowly decreased with Motrin and we will continue to monitor. Cross your fingers and toes we can ride out this sickness from the comfort of our house. We love our Hopkins peeps, but we love our own beds more. 

Next steps...

We met with the ENT today and we discussed the current issues (BiPAP, breathing, snotty nose, hearing, etc) and then the doctor performed a scope. He was careful to warn that the scope likely wouldn’t yield any true answers, but may help us put together more pieces of the puzzle. For newer readers, or those who may not remember, Wyatt is quite the anomaly. Anything that is typical, he doesn’t do. Meaning, he sort of defies science. We have more than one doctor who has stated, “I’ve never seen anything like this before...” in reference to Wyatt. It’s kinda cool to think that he defies logic and truly is one of a kind. Also suuuuuuuuper frustrating when you’re trying to plan for caring for him. 

(Sometimes clinic waits are okay...)

Anyway, we reviewed his background, discussed concerns and then he did a scope. Let me tell you how fun that was. A wiggly two year old trying to shove a camera up his nose? Yeah. That was cool. Not. 

(Sometimes clinic waits are not okay...) 

The scope was enlightening, but also didn’t really answer many questions. His adenoids were enlarged, but his tonsils looked okay. His tongue is in a great spot and isn’t causing the apnea/breathing issues, but the enlarged adenoids may be impacting. Regardless, the doctor wants to remove them in hopes that the very tiny space he currently is breathing through will enlarge, allowing him to breathe better and hopefully decrease his BiPAP settings. While he’s in there, he wants to get more images with the scope, wants to get another hearing test, and wants any other doctor who wants to get a good look, to get s good look. As a result, scheduling will take a little bit of time. There are seriously 6-8 doctors who want him sedated and want access to him, while sedated. So... we will cross our fingers for one time under anesthesia, and some answers. 

(Clinic days are EXHAUSTING!) 

So we will wait to hear when surgery is scheduled. In the meantime, we have a GJ tube issue and as a result the tube will need to be replaced. A part of the tube is broken, but we can still feed him so it’s not an emergency situation. We are scheduled for tube replacement on Monday, unless something happens and we can’t feed him. We are crossing our fingers and toes that we make it that long. If the tube stops working, we have to head to the emergency department, and then wait to get in the surgical rotation, which isn’t easy when you are technically not an emergency surgery, just an urgent surgery. They would have to do IV nutrition while we waited. Certainly NOT how we ever want to spend a weekend, so we are treading carefully with the tube and crossing fingers and toes in the meantime. 

In other news, this guy decided to drink from a straw! Not bad for a kid who only eats about 1/4 cup of food orally. We have started trying new things just to expose him, with zero expectations. And sure enough, he shocked us and pursed his lips and sucked on the straw! I’m not sure who was more surprised, me watching or him realizing water was in his mouth. We will continue to let him explore foods as he is comfortable. 

(Stroller aerobics while we wait...) 

We are looking forward to celebrating Christmas next week and continued health for Wyguy. 

New Kicks and More

Guess who got some new kicks?! 

 This guy officially has his SMO’s (Supra malleolar orthosis) and AFO’s (ankle foot orthosis). These are designed to give him more stability in his ankles and legs to assist with standing. So far he loves them. We have already seen a huge improvement in his willingness to push up to attempt to stand. Our hope is these will give him the strength and support he needs to develop his leg muscles. 

Last week we got the results of his kidney test. It was a good news/bad news report. Good news? It hasn’t gotten worse. Bad news? It hasn’t gotten better. We were hoping for some improvement, but that wasn’t in the cards. We will meet with the urologist to discuss next steps. It could be anywhere from back to antibiotic prophylaxis to surgery. The urologist will chime in and help us to decide. 

We celebrated is 2nd birthday on Saturday. He loved the candles and hated the cupcake. He totally can’t be my kid... who doesn’t love cupcakes?! We might be able to blame his molars for his attitude, though. Turns out this guy decided to get his 2 year molars ON his second birthday. That’s fun for all of us. Not. 

Wyatt met Santa today! It was extra special because Wyatt has a special connection to this Santa. He looks a lot like a dear friend of ours (if you get my drift...) which made the picture taking much easier. No tears and lots of giggles. 

He will have a scope completed this week to check his airway. ENT will chime in and report to pulmonologist about what they find. The current hypothesis is there may be something anatomically impacting his airway, leading to the insane sleep apnea. Typically kiddos with sleep apnea don’t require BiPAP (they may require CPAP though) and definitely don’t require the high pressures he currently receives. In addition to this, we are waiting to hear about a date for his next sleep study. 

We remain hopeful that we are turning a corner with his health and he continues to remain stable. (Hopeful but not delusional... we still have our hospital bags packed just in case)

The jury is still out on his feelings about snow. He hated laying in it, but didn’t mind mama holding him. We enjoyed about 3 inches of snow on his birthday. He wasn’t as thrilled as I was. This Michigan mama enjoys snow. 

Here’s to a great week, filled with some answers and continued progress in therapy! 

Long Overdue Update

Wow! It’s hard to believe it’s the middle of November, Thanksgiving is this week, and December is just around the corner. Time flies when you’re having fun. And that’s just what we’ve been doing! 

We cheered on Daddy as he ran his marathon in support of our non-profit, Wyatt’s Road Warriors, a group that aims to raise funds and awareness for families of first responders (like us!) who are supporting children with complex medical needs (like Wyatt!). 

We celebrated Halloween. Wyatt was Baby Einstein. Figured since his hair was essentially spot on, why not rock the mustache and eyebrows too?! 

We also got mad that our food bowl was tipped and couldn’t get anymore food. 

We’ve been practicing our pre-crawling strategies while focusing on objects. This is super fun!

Mommy and Daddy have had to scramble to babyproof things because, well, toddler on the move! Additionally, Wyatt loves boundaries, likely due to visual difficulties. So the pack n play had been our go-to because of the ease. Well, now that he’s moving a lot more (and sitting briefly!) we wanted to give him more room. Enter: baby jail. It also keeps the dogs away, since Duke has been known to get very excited and accidentally knock into Wyatt. 

Wyatt continues to practice eating orally and he loves it. He’s tried a variety of things, including pizza and Thin Mints. Not because we actually wanted him to eat those things, but because he is so quick these days and just grabs them out of your hand and into his mouth. I’m proud to say he takes after me and enjoys both. But, we will stick to puréed safe foods for now. 

We have enjoyed the use of our adaptive equipment and allowing Wyatt to interact with us the same way his peers would. It is such a blessing to be able to set him in a high chair and allow him to explore his world with a new view. 

We look forward to a great Thanksgiving, surrounded by those we love. Our family has many blessings to count this year and we hope yours does, too. 

Hot Wheels

Wyatt got his new wheels and has started to actually enjoy his time in it, which is why I haven’t posted about it... the photos all show him “protesting”. But I think it’s safe to say he’s gotten more used to it and we have learned more about how to make it more fun for him. 

Playing with toys is fun! 

Playing with toys on the tray is LOADS of fun! He’s already learned he can bang things on it, which makes noise and makes him giggle. It’s so fun watching him learn and explore his world. We’ve gone on some walks and we are figuring out ways to use his new ride to do new things. 

This week is pretty calm, other than therapy appointments. We just made a change to his feeds to see if that impacts his weight gain. But judging by this picture, I’m not sure we need to worry. I mean, check out those arm rolls! 

As you can see, he’s feeling much better! Lots of giggles and fun. Cross those fingers and toes he remains healthy. We follow up with the urologist next week and are hoping to get on the schedule for the orthotist in order to get his leg braces. 

Have a fantastic week! 

Well, That’s Ironic...

So, if you’ve been around a while (or have gone back and read from the beginning), you’ll know that back when I was 26 or so weeks pregnant, we were told Wyatt had a complex heart defect called Tetrology of Fallot (TOF). We were prepared for him to have a NICU stay and open heart surgery at some point before he was 6 months old. 

The day I was induced, the cardiologist was super concerned about his heart and growth, following an echocardiogram. He and my OB had a pretty quick convo while I was laying on the bed being monitored for my non-stress test. The convo went something like, “His heart. Not growing. We need him out.” And my OB was all like, “Yeah? Her blood pressure. Those contractions. Labor and delivery.” (I am pretty sure they were speaking in full sentences but I only heard a few words here and there) 

After Wyatt was delivered, they performed another echocardiogram. It was confirmed then that he didn’t actually have TOF, instead he had a dysplastic pulmonary valve, a PDA (causing murmur), and some pulmonary valve stenosis. We would need to monitor closely, but he likely wouldn’t require open heart surgery. 

We followed closely with cardiology since birth, about every 6 months. Yesterday we got full cardiac clearance for TWO YEARS! They don’t want to see him for two years! This is huge! 

Brian looked and me and said, “Well that’s ironic. Remember when we were so concerned about his heart? Now it’s the least of our worries.”

So true. 

This kid, he’s pretty crazy. He continues to remain a medical mystery. Unless you’re looking at his heart. Because his heart looks good. Stable. 

Home Sweet Home

We are home! 

The final diagnosis was a kidney infection. The blood cultures came back negative and he was displaying many symptoms of a kidney infection. Given his previous diagnosis of ureter reflux and hydronephrosis of the kidneys, it makes sense. Poor guy was really fighting that infection hard. 

He was fever free since last night and had tolerated the oral (well, feeding tube) antibiotic, and his most recent blood work was very reassuring, so we were sent on our way. 

He’s snuggled in for bed and we are hoping his little vacation to Hopkins doesn’t totally mess up his sleep schedule. 

So Here We Are

Here’s the view for the day...

It’s a view that is comforting and familiar. But a view that brings some anxiety as well. It’s the view from Wyatt’s room at Hopkins. 

Saturday he had another febrile seizure and we ended up in the emergency room because his seizure was drastically different than the first febrile seizure. This time was more shaking and less unconsciousness, no dramatic ambulance ride and a worried mama scratching her head saying, “I think it was a seizure, but maybe not?” It was confirmed Saturday night that it was a seizure caused by his fever. They ran some tests, he looked better, we were sent home with the rather uninteresting label of fever of unknown origin and told us to watch him. 

Sunday was more of the same, fever but no real reason for the fever and LOADS of snuggles. Fever responded to Motrin/Tylenol if he got too high or was super uncomfortable. 

On Monday, we followed up with the pediatrician because his fever spiked above 104 (my personal threshold— I get really anxious at that point) and we took him in to be seen. Ran some blood tests and his white blood count was high, which meant he was fighting an infection of some sort. Pediatrician gave us an antibiotic and told us to keep an eye on him, but take him in if we felt like we couldn’t handle it. 

Monday afternoon he spiked to 104.8, the highest he’s been and after a few calls with his pediatrician and our nurse, I called it quits and brought him to the ER. 

They ran some additional blood work and urinalysis and there is an infection for sure. The fear is it may be brewing in his blood, which is much scarier than we had imagined. In addition to the infection, his feeding tube may have finally kicked the bucket, as he just started leaking from the stoma. So we have asked GI and the surgical team to consult to see if we need a new tube. The difficulty with his GJ tube is that it can’t just be placed bedside, it requires sedation and in Interventional Radiology. And we all know how he does with sedation. 

We are crossing our fingers that the blood work does not show any growth, that his urine culture tells us exactly what bacteria it is and we can treat that bacteria, his tube requires minimal fixing, and he continues getting healthier and healthier. 

New Seat

Look what arrived today! 

It's his seat! He had to help me read the directions to make sure I was setting it up correctly. Which is super difficult when he won't actually let me look at the directions. 

But look at him in it! 

A HUGE thank you to the Dixon Kaylor Charities for donating this seat. You have no idea what this means for our family. We can now have him sit safely in a restaurant with us. We can put him in the grocery cart and he can see things! He can sit on the floor at home and play with his toys, dogs, and his new xylophone and drum(I can't wait to get video of this!). He can access his world in a different way, a way that is more developmentally appropriate than sitting in an infant carrier. It also means we can transition him from his infant car seat and into the convertible car seat, which is perfect timing since he's just shy of the height limit. 

We will forever be grateful for the generosity of the Dixon Kaylor Charity.  

Life is Sweet...Potatoes

No big deal, guys. Just feeding himself sweet potatoes.

You guys. It's NOT avocado (he's obsessed) and he's doing it himself! Plus, he looked at the bowl and the spoon. Not bad for a kid with a visual impairment. 

We had an ophthalmology appointment this week. The good news is, everything looks stable. No change. Which we expect*, based on his diagnosis, but we all know Wyatt is pretty much a medical mystery so we have come to expect the unexpected with him. The bad news is, we have to go back in six months. We were hoping they would say a year, since dilation is super annoying for a toddler and the eye exam is miserable for both of us, since I have to pin him down while they perform it. 

*Optic Nerve Hypoplasia is simply underdeveloped Optic nerves. They shouldn't change at all since it's congenital and you can't regrow the nerves. The issue isn't with his "vision" since his eyes are great and his brain looks fine. It's simply that the nerves don't send the message correctly from his eyes to his brain.  However, what he can "see" CAN improve, since you can train the brain to interpret the message the eyes are sending. It's a very complex way in which we see, and since his Optic nerves are underdeveloped, he has a harder time navigating those complexities. But, he's showing us we can never underestimate his willpower! 

His wheelchair, stander, and bath seat will be delivered this week. I'm really excited for all three of these pieces of equipment. The wheelchair will provide support for his torso and neck, allowing him to sit up to see the world better. Talk about awesome! It will also allow us to safely push him around. While his current stroller isn't completely impractical, it isn't supportive enough and this will allow us to support him better and we can always remove some of the supports as he develops more. The stander will allow him to practice standing in a safe way and allow us to interact with him without having to hold him. I suspect he will tolerate it about as well as he did when we tried it out at PT, which involved protesting and attempts to lift his legs. And the bath seat. Oh the bath seat! We will finally be able to bathe him safely. He is currently in a bath seat that is too small and has no safety straps, which means in a blink of an eye he could roll off and have the potential to aspirate or even drown. Needless to say, baths are not my favorite time because it's a little scary. 

We also got great news this week that a charity has graciously offered to gift Wyatt a portable seat. This seat has the potential to be life changing in terms of his ability to interact with his environment as well as keep him safe. The seat can be used on the floor, in a chair, in a shopping cart, and so many other places. I'll snap photos and post an official thank you once it arrives. We are completely in awe of their generosity, as insurance doesn't cover many items he needs. 

He has a cardiology appointment in two weeks. We anticipate things will go smoothly, as he's not showing signs of cardiac issues. However, it's always a possibility that something has changed, so continued prayers that his heart has remained stable. 

Whoa, Dude...

So things have gotten pretty interesting around these parts. I know I promised you a video in the last post and I think maybe I figured out a way to link videos, but he has an even newer trick (well, a few... actually) that I want to share. 

First up... check out that attempt to stand! 

 

This is HUGE! Because of his hypotonia (translation: low tone, which means his muscle tone is low. It's often referred to as "floppy baby syndrome") Wyatt has often looked more like a wet noodle, and often keeps his body curled or tries to put his feet up in the air when you attempt to make him stand. Recently he decided he wanted to push his legs down rather than keep them up, resulting in attempts to stand. While this often comes naturally for many babies, it's not ever been Wyatt's norm so to see this progress, we are ecstatic! Our infants and toddlers PT started pushing him a bit to stand (with LOTS of assistance) holding on to furniture. 

Then there's this...

He's attempting to feed himself! Holy smokes, you guys! And it's not avocado. He's branched out to butternut squash and he actually likes it! I will say, mealtime is much more interesting, and messy, now that he wants to help.

When we got the feeding tube, he didn't want to eat orally. Then we took a step back with all of his illnesses in case he was aspirating, causing pneumonia. We reintroduced foods and he did well, then he got sick again and refused to eat. We tried again and now he's trying to feed himself. 

Then, there's this...

WHAT?! He's showing beginning signs of crawling! This. Is. HUGE! This guy is a fighter and he's ready to move mountains. Not that any of us doubted that. 

To say we are ecstatic would be an understatement. The last 21 months, we were never sure when, or if, he would do these things. 

This kid? He's our lemonade. Life has handed him some lemons and he's making lemonade!