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Baker :: Eleven Months Old

E L E V E N  M O N T H S

He'll be ONE in a few weeks and like always, I'm left wondering how this is even possible. It went faster than ever, even the moments where we were barely hanging on by a thread. We've had a lot going on this past year and this last month was no different.

Infantile spasms have consumed our days (and nights) as Baker continues to receive treatment to get rid of the seizures. He has 3 ACTH injections left and started Vigabatrin, an anti-seizure medication last week. Once he's up to the full dose of the new medication, he'll have another EEG to see if it's working. While it does seem like the spasms have drastically decreased since starting the vigabatrin, I'm hesitant to say for sure they're gone. We need the EEG to tell us that; infantile spasms cause  hypsarrythmia which are abnormal, chaotic brain waves. Once the EEG comes back clean, we can breath a major sigh of relief. Until then, I'm a little on edge and possibly going crazy analyzing his every move wondering if a normal reflex is a seizure instead.

ACTH was rough and was made worse by the fact that it wasn't even working. A few days after he started, Justin and I both agreed we felt like the spasms had stopped. It was successful. Then, Baker had a really bad day right before the 4th of July, almost 2 weeks after starting ACTH. It was like all of this medicine had finally caught up to his little body and he couldn't handle it. He was inconsolable, agitated and soooooo incredibly tired but his body wouldn't let him rest. He cried for basically 13 hour straight, it was awful. That was also the day we started seeing spasms again. By the end of the day, the only thing I could do was cry right along with him. It was a very helpless, hopeless feeling.

He had a repeat EEG that confirmed the ACTH was not really helping clear up the hypsarrythmia which led to starting the vigabatrin. We went to Sioux Falls for the July 4th holiday - Baker had a few rough days there and we started to wean the ACTH that Friday. Slowly but surely, we started to get our boy back.

These smiles - I can't even tell you how good it feels to see these smiles.

You can tell he's feeling better! These last few days, he's also been more active - kicking his legs and batting his arms. He also seems to have better trunk control and more willingness to put weight on his arms during tummy time. All reasons I'm hopeful the vigabatrin is working.

He was sitting so well during these pictures! The ottoman was behind him for support but he did an amazing job shifting his weight and catching himself before falling forward. We're starting and intense "sitting bootcamp" this week to see if we can get him sitting by his first birthday. Ha! It'll be close but I think he can do it!

Another struggle this month (and really, just since starting ACTH) has been sleep. The poor kid hasn't napped well in weeks and his nighttime sleep is all jacked up - no paci, only bottles; no rocking, only bouncing; wide-awake parties from 1-3 am! I really hope this gets back to normal soon!

He's also made some progress with the helmet this month. The back of his head has rounded out nicely but he still has some asymmetry on the right back right side so our focus has been trying to get that area to "pop" out. A few more weeks but hopefully the end is near!

Oh, Baker. You are one tough cookie and seriously never cease to amaze me. You've been a trooper through all of this and we're so proud of you.

Diagnosis :: Infantile Spasms

Our Baker boy. Keeping us on our toes from day one. Well, before day one, actually. From the moment we learned about Baker's existence, life has become a whirlwind of sorts and we've come to learn how to roll with the punches. The last few weeks have been no exception.

Baker has added a few more specialists to his medical binder and doctor appointments to his calendar along with a diagnosis for infantile spasms.

Infantile spasms are certain types of seizures that appear in babies, usually showing up around 4-8 months of age. IS is rare (only 1,200 or so cases are diagnosed a year), hard to recognize and is a very serious condition. The longer it goes undiagnosed and untreated, the worse a child may do developmentally.

For someone like Baker, who is already delayed when it comes to gross motor skills and could potentially face his own struggles when it comes to learning and cognitive abilities, the thought of him having damaging seizures on top of everything else was (and is!) scary. He's also been through so much already in his short little life so to add another thing that's so major seems a tad unfair. I mean, can't the kid catch a break?!

But. Roll with the punches, remember?

The way we noticed or recognized Baker's infantile spasms was kind of by mistake. We weren't looking for anything until I saw a video in my Facebook timeline. It was the week before Memorial Day, and another mom in one of my Facebook groups had shared a video of a baby who had been diagnosed with infantile spasms; she was asking questions about IS and her own child, who also happened to have Down syndrome. I watched the clip (over and over and over again....) and kind of thought Baker was exhibiting some of the same movements, mainly the dropping of his head that he'd do every once in awhile. I showed Justin and he agreed that it looked similar.

I always figured it was due to his low tone and learning how to hold his head up but every so often, Baker's head would drop down for a second almost like he'd gotten tired of holding it up. It'd come down and then he'd bring it right back up. The same movement would happen 3 or 4 times in a row.

We watched him over the holiday weekend and then sent a text to my brother - he's a pediatrician - and asked if he'd had much experience with infantile spasms. I explained what we'd been seeing and sent him a video that I'd recorded of Baker. He didn't necessarily think IS but agreed we should keep an eye on him and said to definitely follow up with his pediatrician if we started noticing his arms and/or legs making peculiar movements along with his head.

That was June 4th and sure enough, on June 6th, I noticed for what I feel was the first time Baker's shoulders and arms jerking up towards his ears while his head dipped. I quickly laid him down on the couch and grabbed my phone to record it. Again, the same movements happened 3 or 4 times in a row.

Over the next week or so, I tried grabbing as many recordings as I could. I ran by our pediatrician's office one day to ask her some questions and show her the videos. She wasn't 100% convinced it was IS either but agreed it'd be a good idea to follow up with neurology so she made the referral.

The children's hospital called last Wednesday morning asking if we could come down for an EEG that afternoon. The nice gal gave me a heads up that they tend to admit you from there should they find anything abnormal. By this point, I was pretty sure they'd find something so we packed a little overnight bag juuuuuust in case.

Baker hated the EEG and all of the probes being glued to his head but by the end of the test, we were able to record some of the movements we'd been seeing at home. He was admitted and spent the next 18 hours hooked up to the darn thing.

We met with a whole group of doctors the next morning and the neurologist officially diagnosed him with infantile spasms. They couldn't tell us how long he'd been having the seizures or how quickly they were progressing but we're thankful everyone moved quickly to get him seen once we started having concerns.

Baker had a long day last Thursday consisting of lab draws, a chest x-ray, heart echo and MRI - all of which had to be completed before he could get the expensive medicine (and by expensive, I mean freaking outrageously hella-expensive...) he needed to treat the IS. The nurses taught us how to give injections and for the next four weeks, Baker will get daily shots to hopefully fend off the seizures. We hope they're gone at the end of this treatment but there is always a possibility he'll need other medication to help keep them at bay. As he grows, we'll have to continue to watch him as he's now at a higher risk for developing other seizure disorders.

He's been doing well since coming home from the hospital. The shots are zero fun but we're already noticing a significant decrease in the number of spasms we're noticing. I may go as far and say we haven't seen one in a couple of days... YAY! He's been irritable and really hungry but we're still getting some smiles out of him.

He gets a repeat EEG next Tuesday followed by an appointment with the pediatric neurologist, the hope there is that they see a significant change and the abnormal brain activity that was present before has "calmed down" a bit.

I want nothing more than for Baker to be healthy, we've been fortunate so far in the fact that he hasn't faced any major illnesses, but the kid has some pretty significant diagnoses/conditions under his belt.

He's a trooper, a fighter, a warrior.

All things we knew about him and it's something he just keeps proving over and over again each time an obstacle gets in his way. Everyone always says you're not given more than you can handle but I'd personally be ok if this was the last "thing" for a bit, you know? I'm sure other things will come up (they always do!) but for now, I want these spasms gone so he can get back on track and continue to grow and thrive developmentally. He's an amazing little boy and we love him so incredibly much.

Baker :: Ten Months Old

Time to recap another month with our boy! HOW IS HE ALMOST ONE!?

I'm not sure how much he weighs or how tall he is - I think we've gone a full month without any medical appointments! He has bi-weekly checks for his helmet but they don't take height/weight at that office. If I had to guess, I'd say he's close to 18 pounds. I still feel like he's a shorty and hasn't really grown much length-wise this month.

His head continues to round out nicely! I'm reallllllly hoping we can ditch the helmet sooner rather than later but he's not growing entirely too fast so I think we're stuck with it for a few more months. That thing hits me in the face on a daily basis and the poor kid gets so sweaty.

Self Care with Smile Brilliant {+ a Giveaway!}

Self care. It's all the rage these days, right?! As a mom, I fail miserably at remembering to invest a little time and effort in myself once in awhile. I barely shower, don't get nearly enough sleep and I'm ashamed to say I've eaten leftover macaroni & cheese straight from the pan and called it lunch. I've also been wearing some of the same t-shirts and sweatpants I've had since high school. They look terrible, not only because they're old, but also because I've since had three kids and as much as I don't want to admit it, I'm not sixteen anymore.

Self care is in. Ill-fitting wide leg sweats from Hollister are so out.

Work, kids, therapy, doctor appointments - it all takes a toll so I've recently made a few changes to my day to help carve out some "me-time" amongst the chaos that is my life. One of these things is working out. Spoiler alert: I still hate it, but I'm down almost 10 pounds since staring at the beginning of March and I'm seeing subtle changes so I guess it's worth it. Likewise, I'm trying to make a conscious effort to eat better. This is also totally lame because mac & cheese is life but at 32 years old, I can't eat like I used to and not pay for it later!

Lastly, I started whitening my teeth with Smile Brilliant! I was so excited when Smile Brilliant reached out to see if I'd be interested in testing out their at-home whitening system. It was super easy to get started and I was pleasantly surprised with the results.

This may not sound like much of a "self care" item but it totally counts! Along with the fact that I don't get a proper shower on a regular basis (thanks, kids!), I've also been using the same beauty products and makeup routine since the beginning of time. Brightening up my pearly whites was a great starting point when it came refreshing my appearance so I don't look like a total mess! I'm still on the hunt for a good under eye concealer (again... thanks, kids!) and anti-aging regimen so if you have any recommendations, hit me up.

Anyway, whitening my teeth has also given me a way to check some other things off my to-do list and focus on things I wanted to accomplish.

Here are 5 things you can do while you wait for those stubborn coffee stains to disappear...

1. Organize a closet. 

Our master closet is usually in complete disarray so during my first 45-minute whitening sesh, I tackled that beast. It was super productive; everything got folded or hung up, things were thrown away and clothes were put into a donation bin! By the time I was ready to change over to Smile Brilliant's desensitizing gel, everything was in order.

2. Read a magazine. 

To maximize results, I usually whiten right before bed so I'd set my timer, climb into bed and just read. It's relaxing and glorious and I need to make it a point to do it more often!

3. Work out. 

Two birds, one stone! The custom whitening trays fit perfectly and I hardly notice them while I'm cursing at the TV during a cardio workout!

4. Put the kids to bed. 

Alright, moms. You know bedtime is an ordeal, right? My girls are the absolute queens of stalling bedtime and it easily takes 45 minutes to an hour to get them tucked in at night. I found the start of their bedtime routine to be the perfect time to start a whitening session.

5. Blog

You can't tell, but I'm whitening right now... ;)

I had used whitening strips in the past but never saw any real results. I think I even slept in them a couple of times in college - yikes! Smile Brilliant's system is great because you're using a product that's safe and effective, developed and recommended by dental professionals and customized to fit your mouth. Better yet, it's all done within the comfort of your own home!

The kit arrives with clear instructional cards that explains each step of the process. The first thing you need to do is make your impressions using the trays and mixing the base and catalyst paste together. I was little intimidated at first because I didn't to mess it up but the instructions are very helpful and give you examples on how to make the best impressions. The paste does not have any flavor so don't worry about having a yucky taste in your mouth.

{And side note - the paste is NOT the same as playdoh so I'd advise against giving the leftover paste to your children to play with for a few minutes... not my brightest parenting idea!}

Once your molds are set, you'll mail them back to Smile Brilliant in the postage paid envelope provided in your kit. I wasn't sure what to expect when my custom whitening trays arrived in the mail but they fit perfectly. They're made out of a flexible plastic which ensures the whitening gel is evenly distributed on your teeth during a session.

Smile Brilliant recommends whitening every other day at first, with each session lasting anywhere from 45 minutes to 3 hours. I found my teeth became a tad sensitive if I wore the trays longer than an hour or so. Also, my gums would be sensitive if I whitened every day so I stuck to the every-other-day schedule. Once whitening is done, follow up immediately with the desensitizing gel for 15 minutes to help cut down on sensitivity. I was a big fan of this step - it helped so much!

I started seeing results after just 3 or 4 applications, which was crazy. The results were subtle - no Ross Geller moments here! - but definitely noticeable!

BEFORE. And sorry, I know the lighting is terrible in these pictures - I took them on my iPhone in our master bathroom at night. No editing has been done...

AFTER. Same bathroom, same iPhone but these photos were taken in the morning with natural light. Still no editing...

Definitely a change, right?! I was impressed.

And good news! If you want to get in on the action, Smile Brilliant is offering a discount code for Baby By Oakley readers! Use babybyoakley15 for 15% off your order!

And better news! Smile Brilliant is partnering with me on a giveaway for you to win a whitening system of your very own! Entering is super easy - click here and enter your name and email address. Follow Smile Brilliant on Instagram for an extra entry! Good Luck!

This post is sponsored by Smile Brilliant. All opinions and fresh pearly whites are my own!

Tooth Whitening Gel

Baker :: Nine Months Old

Better get this update posted before he turns 10 months old... WHERE IS THE TIME GOING!?!?!

Nine whole months with this cute boy. Same old story here - he's still amazing and cool and cute! After getting ear tubes, we really saw his personality shine through but then he got sick (a cold and then some yucky tummy bug) that had him feeling kind of crummy for about two weeks. But, he's now healthy and back to his happy self!

Even if he STILL won't smile for me and the camera...

Stinker.. ;)

Our goals this month continue to be working on rolling over back to front, pushing up with his arms while on his tummy and sitting up. We've been playing patty cake and practicing clapping as well. He loooooooves to chew on his hands but he's still trying to figure out how to work them! He watches us closely, though, so I know he's absorbing things like a sponge.

We've started using a bit of sign language on a consistent basis. Mostly "eat" and "more" while he's in the high chair. We'll show him the sign and then move his arms/hands to act it out before he gets a bite. He's doing so well with food, too. He gobbles the baby food right up and likes to try new things. Some newer foods include strawberries, scrambled eggs, cheerios, ground beef and chicken. He's trying hard to figure out how to pick up the food from his tray but he's not self-feeding yet. He has no issues taking bites offered from a spoon and if I feed him small bites from my plate he does a good job of moving the food around with his tongue, chewing and swallowing which is huge. Another big change this month was the switch to formula full time. We made it 8.5 months with nursing and I'm so proud of him/us. He was my longest and best nursling!

It's sometimes hard for me to accept that he doesn't have all of the gross motor skills that a typically developing 9 month old usually has but I count my blessings because we don't have feeding or growing issues some babies with Down syndrome can struggle with. It puts things in perspective for sure.

He's still rocking his helmet and continues to make progress! We can see a visible change already but I think he'll have it a couple more months so we can really get the back rounded out. Should make for a nice, sweaty summer! Ha.

His toes in that above picture crack me up. Little monkey.

At 9 months, he's 16 lbs 9 oz (he lost almost a pound when he was sick and has started gaining some of it back) and 26.75 inches long. He's in size 3 diapers and 9 month clothes. I'd love to ditch the infant carrier and move him to a convertible carseat but we'll wait a little bit longer until he can sit unassisted to make running errands a little easier. He usually naps 3 times a day (morning, afternoon and late afternoon before dinner) and typically goes to bed around 7:30 or 8. He was sleeping through the night but has been waking up to eat around 2am for the last week or so. Again, trying to gain some weight back or maybe headed into a growth spurt!

We skipped spring and went right into summer so we've been spending a lot of time outside playing and going on walks. I'm sure he'll be loving the pool once it opens for the season, too!

Happy 9 months, Baker boy! We sure love you!