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2018 DSDN Rockin' Mom Retreat

When we first received Baker's Down syndrome diagnosis, I hadn't knowingly met a single person who had experienced the same thing. I hadn't met a person with Down syndrome or knew anyone who had someone with Down syndrome in their family. I don't remember seeing kids with Ds in school or in stores or on TV. Maybe I had blinders on or it just wasn't on my radar. We had friends and family supporting us but as far as I was concerned, we were alone in experiencing this first hand.

And as you can imagine, that's a pretty f'ing scary place to be. It felt like our world was caving in but after taking a day or two to process the initial news, I needed to do something. I needed to learn what this meant for Baker and our family. I needed to see what life would be like once Baker was born.

Social media is so strange but it can also be really wonderful at times, people can connect easily and hashtags are searchable so that's where I turned. I had been added to a local Facebook group the week before by a friend-of-a-friend after we learned of Baker's heart. The group was for heart moms, women who all had littles with some kind of congenital heart defect. I posted an introduction, explaining what type of defect Baker had and the fact that he'd most likely be born with Down syndrome.

Within an hour, I had received two messages from moms in that heart group who knew of other moms who had kiddos with Down syndrome. Those babies had the same CHD as Baker and each one offered to get me in touch with them.

Within a day, I was messaging back and forth with Blair who lives in Iowa. Her son was born the previous year and had recently recovered from open heart surgery. Her story was my story and all of a sudden, we weren't alone.

Not even close.

Blair introduced me to the Down Syndrome Diagnosis Network (DSDN) whose mission is to connect and support families who have received a Down syndrome diagnosis. They have Facebook support groups for anything you need related to Down syndrome. There's a heart group and an infantile spasms group. There's an All Star Mom group filled with veteran mamas who are all raising kids with Down syndrome and have most likely seen it all. Most importantly, there are smaller birth groups divided out by year so I'm able to connect with over 300 other moms who have babies with Down syndrome that are all Baker's age.

These are all places I can go to ask questions, voice concerns, laugh and cry, because they get it. They understand what it's like to feel like your world is crashing down around you, and then getting the chance to come up for air and see the beauty in the diagnosis. They get the feeling of wanting to punch someone in the face when they tell you, yet again, that you're "blessed" and "lucky," They understand apologizing later because maybe - just maybe - they were right. They understand the stares and awkward questions and incorrect or outdated terminology and appreciate the chance to educate and advocate because these kids deserve it.

This past weekend, I traveled to Phoenix with 8 other moms from Kansas City to attend DSDN's annual Rockin' Mom Retreat. It was a chance to finally meet all of my online friends in real life and spend the weekend relaxing and taking care of ourselves. To be in a room with 400+ other women who share your story is a pretty powerful thing. Down syndrome is what we all have in common. It brought us all together and paved the way for friendships to form that will last a lifetime.

Unfortunately, my weekend was cut short after Justin called me and told me he was taking Baker to the emergency room. I flew home a day early to be with my family but not before getting the chance to share mimosas with the girls, log some hours in the lazy river, drink fancy resort cocktails, take questionable uber rides to In-N-Out and buy all the tallboys at the convenience store because fancy resort cocktails are hella expensive.

I got the chance to eat a hot breakfast that I didn't have to make and drink a hot cup of coffee all in one sitting. I was able to shut my eyes at the pool and not worry about anyone drowning on my watch. I read, like, 4 magazines. It was amazing!

I also got the chance to thank other women for sharing their stories, for sharing their children. Because of them I was able to scroll Instagram and search for those hashtags and they showed me life with Baker would be okay. It's hard at times, sure, but we're okay.

We had a running joke at the retreat while we were sitting by the pool, drinking and chatting under the palm trees as one does when they're retreating... *This* was Down syndrome. *This* is what you get. It may be scary at first, and you will have to process some really heavy feelings in the beginning but what you get after all of that is truly amazing.  You get friendship and support, picked up when you feel sad and others to help you celebrate the happy. People who become your confidants. You get to be surrounded by hope and you get to share joy and that's pretty special.

Thank you, DSDN for putting on an amazing weekend. I hope to enjoy the entire thing next year... ;) This organization is changing lives and the way the world views Down syndrome and my family is honored to be a part of it all.

Baker's First Birthday Party

Finally getting around to posting some photos from Baker's little birthday party on the old, neglected blog. I shared some of these on Instagram, too. We hosted some family for the day and it turned out to be a pretty good afternoon celebrating our superhero!

I decided last minute that we needed a "theme" so the superhero trend was a no brainer. We had everyone representing: Thor, The Justice League, Wonder Woman, Captain America and our very own Superman.

I was so impressed with Baker, he was totally into his gifts and all of the wrapping paper that came with them. He had plenty of helpers and sat back to take it all in.

He's still working on self feeding but didn't have any issues getting after that cake. Not sure how much he ate but he managed to make quite the mess!

We had the best time celebrating you, baby boy! We love you big time.

Baker :: Twelve Months Old

I have every intention of blogging more than once a month but this thing called life keeps getting in the way! We've had a BIG month over here... BAKER IS ONE!

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.