Starting In the Middle: big, giant summary

To summarize what’s happening with Kaitlyn seems impossible, but since she’s what makes impossible all possible…  here goes.  I can’t promise it will be short, or that this will make any sense…

Kaitlyn was born a healthy, gorgeous, glowing baby. Her eyes caught you even if you didn’t know her. Her eyes still catch me, and anyone who stops to look at her.

Seizures started when she was 2 years old. They tried to take over, but Kaitlyn’s tenacity and strength always prevailed. In spite of seizures and the toll they took:  she learned songs, took in everything around her, smiled,  loved all things pink and pretty, and seemed to have the world wrapped around her cute, perfect finger. She loved tree frogs, pink roses, pancakes, hot chocolate in glass cups, tea parties, her family, and even an early start to crushing on specific boys.  I’d like to blame Disney for that, but it’s just who Kaitlyn is. She isn’t afraid to see the good in everything, and say what and who she likes. Kaitlyn’s love for her little brother Kai is an amazing thing to witness. Those two are so connected.

When Kaitlyn was 5, her seizures were daily, and she was falling behind in school.  But it was kindergarten.. how serious can those scores be?  (I always have “but it, but noo, but it’s ok” remark.. just so you know).  She started new meds in addition to the first ones, went through medication increases, decreases, changes, side effects, etc.  I have an appreciation for medicine that I can’t describe, but I also can hate and fear them.  No choice or decision in this process has been easy.  If , “fix her” was all I needed say, that would be great. Her neurologist advocated for her to have a VNS implant (Vagus Nerve Stimulator) and it was placed before Christmas that year. Weird how such a process can fit in one sentence really. The VNS made a HUGE difference. Kaitlyn’s seizures were less often, less intense, and the effects of them had less of an impact on her, overall. She was awake more, learned songs, talked in longer sentences which lead to hilarious Kaitlyn stories. She was the kid she deserved to be! It wasn’t perfect, seizures still came, but it was so much better.  

Kaitlyn repeated Kindergarten in Windsor when we moved- and she had seizures, but she also still thrived. 1^st grade was even better. Seizures were less, she was still behind in school- but she also improved consistently.  Windsor Schools took Kaitlyn in with so much love, understanding, compassion, ability and a collective goal-oriented way of making sure Kaitlyn was always moving forward.

2^nd grade started out pretty good. Kaitlyn’s seizures affected her work, and she often had them at school, but she had the support she needed and was consistently improving. However, then she started getting sick more often, more than just seizures. In March of that year, she had pneumonia and even though she was only hospitalized for 2 days, that illness took a lot out of her, and it took a long time for her to recover.  Her seizures were worse after that, and more often.

Kaitlyn’s pediatrician recommended we switch neurologists, to a more specialized doctor. We went to Oakland for her neurology care for a few months, and went through some medication changes. Nothing seemed to help, and Kaitlyn continued to have increased seizures, and fall behind more in school.

3^rd grade was incredibly difficult. Kaitlyn was often sick, and had even more seizures at school. Most days, I picked her up from school because of seizures, fatigue and her being sick. We never gave up on school working- and the staff helped Kaitlyn, and me the best they could. The support of the school community was amazing. Kaitlyn’s aide and teacher always checked in, even when Kaitlyn couldn’t make it to school. The principal wrote a letter to Kaitlyn’s doctors, everyone tried to help. We switched neurologists again, this time to San Francisco. That neurologist was more like our first neurologist, who Kaitlyn absolutely adored.  Kaitlyn was thoroughly examined, we spent a lot of time discussing Kaitlyn,  and she only changed one thing at a time- which was incredibly helpful in seeing what was working, what wasn’t, etc.  She’s also so easy to get a hold of, and always got back to me. Kaitlyn’s nurse case manager in SF has also made a huge difference in this process. I can get a hold of her, and she has helped direct me in so many seizure situations. She also helps coordinate Kaitlyn’s other needs. Kaitlyn’s pediatrician is her favorite doctor by far. He’s guided us through these past years and has always kept Kaitlyn’s needs at the forefront of every decision. He makes Kaitlyn laugh like no other. He looks at us as a whole, and always considers Kai and I as well. We have the best care possible, I’m sure of that. 

Unfortunately, even with the best care, Kaitlyn hasn’t gotten better- she’s actually doing worse. She lost weight, was falling even more behind, wasn’t able to attend school at all. The seizures seem to be taking over  the most amazing girl in the entire world, this Kaitlyn. It’s harder to summarize August of this year to now because we’re still in this big unknown.  

In September Kaitlyn was hospitalized after a long virus. We spent her birthday in the ER. It was again only a 2 day hospital stay, but it was hard leaving the hospital again, with her not being better.  After continuing to not get better and an increase in seizures- she was hospitalized again in SF and saw more specialists at once. She had a 24 hour EEG which showed some “slowing”, and she had nearly stopped eating all together.  Again we left the hospital without knowing what was wrong, and she wasn’t any better. We went home to start a medication change, which did help with seizures gradually, but she still wouldn’t eat. She was hospitalized again in Santa Rosa that next week and had an NG feeding tube put in. The NG feeding tube helped put calories in her, but she was miserable.  That was a 6 day hospital stay. Seizures were less, but she seemed so sick, so tired and not herself.

Once home, the seizures went back to being awful, although less often. In between seizures, Kaitlyn worked on a letter to the president, drew pictures of what it would be like with no seizures, snuggled her brother as much as possible, went through books with me, craving princess stories and “normal”. She went by ambulance one night because she had a seizure that wouldn’t stop, and had so much shaking I couldn’t physically get her in to the car. She was hospitalized again, for 4 days and we all discussed a g-tube to address that Kaitlyn still wouldn’t eat and the NG tube is miserable. The tube feedings were talked about as a long term thing, and that was hard to absorb in my head. We spent Halloween in the hospital and even though they did decorate funny pumpkins, I was missing Kai- and the sadness of being in a hospital felt bigger. Big words were thrown my way as possibilities. The biggest and ugliest one being neurodegenerative as a possibility to explain what was happening to our Kaitlyn overall. Her neurologist called and talked about many possibilities though, and that felt reassuring. The impact of Kaitlyn’s nutrition was big, and so getting her nutrition under control could help with seizures and her overall health. The hope is that through tube feedings, Kaitlyn will gain strength and want to eat again. More tests were ordered, and the unknown actually started feeling safer than the things they were testing her for.

The g-tube surgery itself went well. We were in Oakland for 3 nights, and Kaitlyn’s strength- like always, amazed us all. She hurt constantly, and she endured more than any kid should, but she did everything with a grace and strength I can’t describe. She has this look for doctors she doesn’t know. Her big dark eyes glare, and her nose turns up, but she has this little smile, too. I’ve seen it happen over and over. They start out talking with doctor words, and by the time they’re around Kaitlyn for a bit, they melt too. She gets you, it just happens.

Before the g-tube surgery we met with Dr. Rich, the pediatric gastroenterologist. He talked about what was happening, that he thought Kaitlyn sounded like she had a global motility issue that could be caused by neurological issues. All sounds vague, and I can’t describe it right, but it also sounded scary- and yet made sense with what we were seeing. During that meeting, Kaitlyn was in pain, and had a seizure about an hour before we saw him. She didn’t feel good, but she was in there, being the Kaitlyn we all love. He left the room and Kaitlyn turned to me while holding her stomach, “Let’s make a run for it!”. And she giggled. It’s hard to describe her strength, but it’s those moments that remind me she’s such a fighter. 

Kaitlyn’s had some impressive stare downs with doctors, nurses, lab techs, and receptionists that may facilitate such meetings. She also wraps everyone up in a way that makes us all connected. She makes the world make sense, and I need her more than ever. I don’t know what these next weeks, months, years bring.. but I know we’re going to fight hard for every moment to be what she deserves it to be. And for Kai too.  So, here I’ll write.