Sadie’s Story- One last update

Exactly one year ago today, October 30 2017, I watched Sadie have her final (and hopefully forever last) seizure. I remember it so clearly too. We had just returned home from her first visit to meet her neurologist at the Infantile Spasms clinic in Atlanta. We hadn’t received the best news. Her EEG was still abnormal and there was some concern that she was continuing to have multiple spasm clusters per day, even after being on medication for over two weeks. Infantile Spasms are seizures that need to be controlled as soon as possible- otherwise neurological impairment is much more likely. I remember that drive home, feeling not defeated, but ready to fight. I didn’t have time to worry about her future or to feel sorry for our situation. All I could think about was getting her better. I could only be in the present, because the future was too scary to think about.

Sadie’s first night in the hospital

That evening we had gotten our oldest to bed and were sitting downstairs on the couch. Sadie was sleeping in the rock ‘n play beside us. She woke up, and I waited for her seizures to start. They always happened upon waking. Sure enough, she had a focal seizure then her spasms started. I looked at the clock, praying this would be a shorter cluster than usual. All I wanted was some good news to tell her nurse the next day. It was ten minutes long. Not good news, but I prayed again, pleading to God that tomorrow would be different.

The next day was Halloween. We made it through 24 hours with no seizures. Then it was a full week. Then a month. Then six months. The miracle we had been waiting for had happened.

 

What’s incredible is that now, watching Sadie, I sometimes forget everything that she’s been through. She’s a completely normal, happy 15 month old. As far as development goes she’s blown her motor skills out of the water! She was crawling at 8 months, taking steps by 10 months and walking at 11 months. She’s completely fearless when it comes to trying new things. By a year old, she was climbing to the top of the playground at every park we would go to and find the most challenging slide to go down. She refuses my help, she wants to do it all on her own. If you had told me she would be doing the things she is now a year ago, I wouldn’t have believed it. I remember sitting in the hospital, holding her all wrapped up in her tiny hospital gown, gauze all over her head with wires coming out, and the neurologist telling us exactly what we had feared…..

…….the side of the brain the seizures are affecting isn’t good

…….she’s not responding to treatment as quickly as we liked

……..normal development is highly unlikely with these babies

…….most babies with infantile spasms have moderate to severe neurological¬†impairment

……..other seizure disorders can manifest, including Lenox Gataut Syndrome

At one point I stopped listening, I just couldn’t process any more. I spent hours on Facebook support groups, desperately trying to find success stories. There were a few. Most left me feeling discouraged. By our second day in the hospital I had stopped crying and had accepted the fact that I would be raising a special needs child. And I mentally started preparing myself for that. I hated the feeling that I was losing her, but I had to be strong for her. Even thinking about it now makes me emotional. I wouldn’t wish a sick child on any mother.

One of the many EEG’s Sadie had to do last year

My last blog post on Sadie was the end of 2017. A lot has happened since then. Her spasms stopped for good on October 30, 2017. Since then her focal seizures also stopped. There were a few instances around February and March of this year that we think she may have had a couple absence seizures. This was only through clinical observation (myself and my mom and husband), but they were never picked up on an EEG. Her case manager thinks they may have been absence seizures from what I described, but her neurologist dismissed it. So we keep the anniversary of her last seizure being on October 3o.

Sadie took her last dose of Sabril on March 22, 2018. I remember being so happy, yet terrified at the same time. Sadie HATED taking that medication, so much that I had to force it down her throat. Once we stopped, our morning routine became much more pleasant. I was so scared the seizures would come back and be even worse than they were before. Thankfully we were able to fully wean and her EEGs continued to show normal brain activity. Such a praise!!!

 

This summer we moved from our home in Georgia to Indianapolis, IN. We made the decision after Sadie was discharged from the hospital last fall that it would be better to be closer to family. We weren’t sure what Sadie’s future would hold, and wanted all the support we could get. We did our research, and found that Cincinnati Children’s hospital was ranked #3 nationally in neurology. Even though we weren’t displeased with Children’s Healthcare of Atlanta, we wanted her to have access to the best medical care possible. Cincinnati is only two hours from Indianapolis, and Indy was a location that Nick could easily transfer to as an en route air traffic controller.

It was tough leaving such an amazing community in Georgia. People there felt like family, especially with all the support we received while Sadie was in the hospital, and the days after as well. As hard as it was to leave, we know we made the right decision. We couldn’t be happier where we are right now! God has blessed us so much, surrounding us with amazing new friends and community, and reconnecting us with old friendships. I was nervous about the adjustment, but it’s been easier than I expected.

 

Sadie has had one appointment with her new neurologist in Cincinnati, and we were very impressed with her. She gave us insight we never had before. After numerous tests, blood draws, x-rays and an MRI, we have never been able to find the cause of Sadie’s infantile spasms and seizures. This was hard to accept, I wanted to know exactly why my daughter went through all that she did. And if there was something that could have been done to prevent it. I’ve been through some dark moments, blaming myself for possibly doing something wrong during my pregnancy with her. I had to put the blame somewhere, it was easiest to blame myself. Her neurologist mentioned that her seizures could have been caused by focal cortical dyplasia- an abnormality in the brain that can cause seizures and also infantile spasms. She said it’s an easy fix if she were to have it- “just an easy brain surgery.”¬†That’s literally how she worded it. I’m not sure I would call any brain surgery “easy” but it did make me feel at ease that this wouldn’t be a serious issue. She told us it would be picked up on an MRI, just not the one Sadie had done a year ago because she was only 11 weeks old.¬† At this point, Sadie’s care plan stays the same. No medication. No more EEGs. Live a normal life. Unless she starts having seizures again- then she would consider doing an MRI again to see if cortical dysplasia really is the cause. Right now, we just hope and pray that she stays healthy!

The only concern we have right now with Sadie is her speech. At 15 months, she isn’t saying any words. She says “mama” but it’s more a sound (mamamama) than a word. She knows I’m mama, but also refers to other things as mamamama. Her seizures did affect the side of her brain that controls speech and comprehension, so we are starting to get a little worried that she may have some delay in that area. We are watching it and don’t want to get too upset about it just yet since she’s still so young. She was an early mover, maybe she’ll just be a late talker! It’s something we are watching, and if we have to get her involved in speech therapy to get her the help she needs, then we are more than ready to do that for her.

Other than that, I’m just chasing around an extremely busy toddler whose world is about to be rocked in a few months. We got the surprise of our lives this summer when we found out we were expecting our third little girl! I’ve had a lot of fear this pregnancy, but thankfully Nick and I have had genetic testing done and everything came back normal. This puts my mind at ease a little bit. As a mom it’s hard to not worry about your kids, and I know I’ve developed some additional anxiety after all we went through last year. When I took Sadie to the ER, completely convinced that I was overreacting only for it to be confirmed that I wasn’t- it definitely changed my perspective on a lot. My kids are not immune to everything, and we certainly aren’t invincible. Still, there’s a fine line between worrying too much and being too laid back. For instance, thinking about Sadie possibly developing seizures again terrifies me. Especially now that she’s mobile. What if she has one at the top of a playground, falls, and hits her head? I can’t not let her explore and learn how to be independent, so I can’t let that fear control me. Finding the balance can be tough, but I would drive my kids crazy otherwise!

I’ve shared Sadie’s story with so many moms who were in my position last year. Scared, in the hospital with their tiny baby, and so unsure of what the future will bring. I’m thankful that I can provide them encouragement and support during such a hard time. I still can’t believe the place that we’re at with Sadie- she truly is a miracle. To everyone who prayed so hard for her, who were there for us during that time, and was her cheerleader through it all- thank you so much!

The bottom two videos were taken exactly a year apart. The first is of Sadie having a cluster of spasms, at this point I had no idea it was a seizure activity. The second is of her today- healthy and seizure-free.