Post-Surgery Update

Lily had a really rough time when she came out of surgery, but has done fairly well as long as we keep up advil and tylenol every 3 hours...even at night. Staying on top of the pain has been key for sure! The antibiotic has caused her to have a very upset stomach. We changed about 9 messy, diarrhea diapers yesterday, and she has farts so darn stinky that it could make monkeys fall out of trees! I switched her to the BRAT diet (bananas, rice, applesauce, and toast) to help with her stomach ache and gave mylanta and that seemed to help. She is groggy a lot and then has trouble going to sleep so she's up and down with mood. Moments of screaming followed by periods of laughing. Hopefully as she gets passed the worst of the pain, she'll feel much better having her ears dry and clear. They say that a few days in they can spike a fever and be in more pain due to a scab forming in her throat. Let's hope we miss that boat!

Surgery Done

Lily was in a lot of pain upon waking from the surgery, but we were able to get it managed, and we're home now. Lily is drinking but not eating yet. Glad we got her seizure meds down at 4:30! Whew! Pass the coffee....the whole pot. :) 

Ear & Adenoid Surgery Tomorrow

So tomorrow morning is Lily's surgery for her 4th set of ear tubes and adenoidectomy. The hope is that it will reduce the fluid in her ears and her monthly ear infections. It's really hard to want to do it when we have better seizure control (0-2 mild ones a day). Also, her development is pretty good right now as well. However, she is still taking 2 short naps a day and tires easily, probably a result of all the recent increases in seizure meds and afinitor.

I realize that this is a fairly minor surgery, and we've certainly been through more risky and more difficult procedures, but I'm still so nervous. My tummy is all in knots and I'm trying to keep myself occupied today. Probably my biggest concerns post-surgery are getting her meds down if she doesn't want to swallow and pain management. I've heard that it's actually a few days after surgery, when the scab forms, that it gets rough...and that's when the fever spikes. Eeeek.

On a good note, today in school she picked up a marker to scribble, and this afternoon she did 5 little bunny hops on her hands and knees to move forward. YAY!!!!

I'll update as soon as I can after the surgery. :)

Softub Relaxes her!

Thanks Alicia for the adorable swimsuit!

Getting Stronger!!

Park Life

Outside is Best

Lily loves to be outside in the sun! She also really loves to nap in the grass...I'll put her down on a blanket and she'll just move off of it. Sweet nature girl :)

Giddy up Cowgirl!!!

Rainbow Pox

Kayla gave Lily polka dots with finger paint! She obviously had a blast!  

Delicate Balance

Lily has had an ear infection every month starting in January. At her ENT visit, he recommended to not only replace her ear tubes for the 4th time, but to remove her adenoid. Since she seems to really have trouble with her ears, we agree that it's the best option at this time. Ear issues tend to increase seizures quite a bit, so as we started to see more and at first it was easily attributable to ears; however, the seizures really started exceed what we would expect with just ear problems so we got labs and neuro took a look this week. Well, Lily's drug levels dropped by at least 1/2!! She's had a big growth spurt which could be to blame, so we went up a few days ago on the Clobazam and starting yesterday we're going up on the Zonegran. With the titrates, we've gone from a few small and often one long 3-4 minute seizure down to about 4 (45 second seizures a day). More and shorter seems to be better on her developmentally as well. But once we start moving meds, it makes her groggy and understandably fussy. We'll also be increasing her Afinitor from 5mgs to 7.5mgs. After 2 weeks of going up on meds, we'll then spend 2 weeks going down on Keppra (a seizure drug) to see if it helps with her mood---Keppra is notorious for causing behavioral problems. We've lowered it before and seen good results but didn't want to lose our sweet spot of near-seizure-freedom. But this time we'll be getting rid of it for good. At the end of all these drug changes over the next month, she'll have surgery May 29th. We're definitely concerned with how we'll get meds down after the surgery. It's so many pills and if her mouth is sore, it could be an issue. We can always crush all the pills and push them in liquid via syringe, but that's a miserable route for all involved---especially Lily.

All that said, her development is still doing pretty good considering. She has her new orthopedic shoes and is doing a great job with practicing standing. She's doing great with her teacher, Ms. Sharon, and swim has been a blast with Ms. Joy. Unfortunately, swim has to hold off until the surgery, but then it will resume. She is still doing horseback riding, but her instructor has been ill and with Lily's lowered immune system could not go, but she'll be riding this week.

Hopefully we can find our sweet spot again with low seizures and forward-moving development. It's always a delicate balance between seizures and cognition, and we have often found that the more control we have over one, the more we lose of the other, but as the Afinitor continues to work on those brain tumors, the more hope we have that we'll one day find Lily is seizure-free and cognitively clear.

Rainforest Cafe

I know! Let's go to a really fun kid place and not take the kids! Commence rainforest cafe adult style. :)

Pike Place Market

We had a girl day out at Pike Place Market in Seattle! We ate smoked salmon, talked to the fisherman and old hippies, and took in the gorgeous views of the Olympic Mountains. It was such a beautiful day...even after I scraped the van on a wall....downtown Seattle is like trying to drive in a sardine can. It didn't spoil our fun though--we had a blast!!!

Fort Nisqually

Puget Sound on a Sunny Day!!

Alicia Visits!!!!

Snuggle Time