Flipping Coins

So we went awhile without seeing any seizures and now we're seeing some maybes. But we also switched Lily to Onfi (the American version of Canadian clobazam) and she's wanting to sleep a lot and she's still mostly happy but having some inconsolable cry sessions/tantrums. She's also backing up developmentally--not feeding herself well and not trying to crawl. This could be that the Onfi is making her tired, so first we'll try some of the Canadian brand for a few days and see if there is any improvement. If not, we'll start the switch to Banzel. It could also be that she's coming down with something, but it doesn't appear that way--no other symptoms. It always feels like flipping a coin to see what will work, and we're always afraid of losing what we've gained, but we can always go back if things come undone.

I did a lot of spring cleaning today, organized bills & insurance paperwork, worked on getting Lily an orthopedic shoes casting, worked more with insurance on getting her wheelchair, checked in with Lily's doctors, did 4 loads of laundry, and did some OT with Lily. I think I'm ready for some evening R&R!!! The sun is shining, so I must run outside immediately! haha!!

A Break From Seizures

Lily went about 2 weeks without a seizure, but now we're seeing some maybes. We know reprieves are often brief, and that's ok, at least we get a break. The last few nights have been rough, however, because Lily is waking up in the middle of the night (sometimes crying, sometimes not). Then, she's up and ready to go at 6am. I am shuffling my feet Shaun of the Dead style and trying to function without sleep, and I have a sinus infection to boot.

During the day, Lily is happy happy happy, so I'm not sure what is causing the sleep disturbances. We'll have to wait for another symptom to show up or for it to pass. Until then, we are enjoying a lot of giggles....she goes into these laughing attacks, just cracking herself up!! It's fun to watch. :)

Happy Birthday Grandma!!!

We love you and hope you have a spectacular birthday!

Valentine's Day

We had a fun Valentine's Day! Scott and I went out the night before and had a lovely dinner together, and the next day, we went horseback riding with Lily and then came home and played and had chocolates together as a family.

Sleeping Beauty

Lily woke up on Friday with a fever of 103.6 and slept most of the day on Friday and Saturday. By Saturday she had a cough. This has been a rough flu season, and I'm ready for it to be on it's way!! I'm glad she's sleeping and not up crying and miserable! When she wakes up, she eats and drinks and seems pretty happy, so I'm glad that she is getting through this cold with more ease than we've seen before!!

New Team Lily Member!

Angela, who has been with us for over a year, is moving to Georgia with her husband, so we needed to find a new mommy's helper. We will miss Angela, she has provided us so much relief when we needed a break, but we know she has a whole new adventure to undertake. So, after a ton of resumes and interviews, we hired Kayla and have been so happy to make her a part of Lily's team. Lily really likes her and Kayla is amazing at spotting seizures, playing with Lily, and helping us with horseback riding. She stays calm when Lily has a meltdown and shows her a lot of compassion and kindness. We feel very lucky to have her helping us a few times a week; it makes all the difference in our lives!!!

New Things

MRI results showed no change so no growth either. Yay! Boring medical results are good, but I really did want to see the tumors get recognizably smaller. We still know that her development is better than it has ever been on afinitor, so even if the MRI doesn't see a change, we do. In fact, in Dr. Sotero's office, Scott handed Lily her Woody toy and she grabbed the string on his back and pulled it over and over to hear him talk (this was the first time she'd done this without us helping her do it). It must be the universe's way of reminding me that we are seeing a change!

So after the removal of the Trileptal, Lily started this wacky screaming/growling behavior that had us concerned that she was ill. After having her checked by doctors and having a few therapists watch the behavior, we have learned that it is behavioral. She throws a tantrum! She's thrown tantrums in other ways before, but we would actually lose it...it's a good thing that she throws a tantrum because we know that she's really with us and making a concerted effort to control her environment. So we're just ignoring it if we know her needs have been met or redirecting her to communicate with the ipad if there is a high likelihood that she is hungry etc. so that she has another way to express her need. So far so good!

Seizures are at 1-3 a day and lasting about 30 seconds, some of them are clinically strong and others are hard to spot. We want to start her on Banzel (a new seizure medication) but our co-pay is $400 a month so we've applied for patient assistance and hope to get an answer soon. We're also trying to get assistance with Clobazam (Onfi) because our co-pay is $1000 a month and driving to Canada for it at $100 a month is still risky since they can confiscate it and you can only bring back 3 months at a time without risk of prosecution and possible jail time. It would be so much easier if we could get it here in the Good Ol' U.S. of A.

Horseback riding still going really well! In fact, we go tomorrow and I can't wait. It does, however, seem to make Lily really sore--my mom reminded me that you have to get sore to get stronger, but it's hard for us (even grandma!) to see her have any more struggles than she already has, but we just have to hope that the fight we put forward now will result in less later. Plus we've already seen results and Lily loves it so we all get really excited when it's time to head to Woodinville!!

At the Park

We took Lily to the park in her wagon but when we tried to get her on this chipmunk, she got so upset! :( I'm pretty sure if she could talk, she would say that this is not a horse! It's cold and metal!!! I ride horses only!!!!

Did That Just Happen?

So Lily had her second horseback riding session, and she did a little bit better than the first time. It's so exhausting to her that by the time the ride is finished, she is really tuckered and sleeps on the way home. But one has to wonder at $115 a session if and what kind of results we would see. Today we had our first result. I put Lily in the kidwalk, which she does about 3 times a week. Usually I don't see a lot of advancement in walking so far, but it has helped her to learn to put some weight through her legs and to play and be standing up. However, today I pulled her toward me and she (on her own) moved her left and right foot like she was walking. My mouth fell open and I thought, did that just happen?!?! So I tried it again by slowly pushing her down the hall, and she did it again. Granted, she wasn't putting much weight on her legs, but she appears to have gained the left then right instinct!! I still can't believe it!!! I love that horse! Oh yes, I will forever love Scooter--her amazing horse!!!

Also tonight I made Lily some peanut butter oatmeal balls and in order to have another she had to say mmmm for more. She did it 5 times!!

Such a good day!! A very good day!!