Spring Forward

With the end of Spring, I realized that I hadn't really done a comprehensive update in awhile. And I actually use my updates not only to look back and see where we've been, but also I've used it to compare different meds to each other or therapies to see what is working, so as much as this is a blog to inform friends and family, it is also a history that helps us discover what works best and how to hit those "sweet spots" again.

Seizures: So since we found out that Lily's med levels had dropped to half (most likely due to a growth spurt), and we upped her Zonegran, Clobazam, Afinitor (but actually dropped her morning dose of keppra), seizures have been very good and sometimes nonexistent. She's having about one a day that lasts 15 seconds, but we sometimes have a day or two in a row that appear seizure-free.

Surgery: Lily really took longer to recover from the adenoidectomy and fourth set of ear tubes than the doctors' suppositional time--the afinitor slows down the healing process, so it took about a month before we felt like she was really back to feeling 100%, but she is doing great now, and we really hope that this is the last surgery for this issue! Fingers crossed!!

Therapies & School: Lily is doing really well with school, and we absolutely love her teacher!! She's reading stories and answering yes or no questions on the ipad about the story. Still working with numbers, colors, and reading and other big girl stuff. School and PT with the school district is out for summer, but her teacher will come once a month this summer to keep Lily on track and then her and I will do a few sessions as well. Lily is still doing horseback riding and doing very well with it!! In fact, this last session was by far her best ride ever! It is making her so much stronger! We start with a new speech therapist on Monday; I'm really excited about him because he specializes in children that are not speaking yet...allowing Lily to communicate in whatever way she is capable of now. And we are also starting with extra physical therapy with Lily to further help her strengthen her body to walk.

Development: Lily is getting around like a champ! She's rolling, scooting, bunny hopping on her knees, diving, and sometimes she tries paddling to get around the floor. The paddling is so funny. She's sits on the floor with her feet straight out in front of her and paddles both arms like they're oars in a kayak. Granted, she doesn't get anywhere (turns out she's not a boat), but it's great to see her making ANY effort to explore. She's working hard and doing much better at drinking through a sippy cup with a smaller mouth (long-term goal is a straw and of course a regular cup). She is also doing better with communication...using the iPad, signing happy, and waving bye bye. She is also saying dada and mama. When she says dada it's in a sweet, sing-song daaaaaaaaahhh daaaaaaaaahhh. When she says mama, it's full of anxiety and nearing a psychotic break. MAMAMAMAMAMAMA. Then I ask her why my name sounds like a panic attack, and she just has a laugh or throws herself back and continues to panic. Sometimes I have to bite my lip in an effort not to laugh because that will really make her mad!!

Character: Lily is still the sweetest girl!! She loves to be called a fairy princess---so funny because I avoided the princess term for so long...you know just in case there is a Veruca Salt effect. She loves to be told she is pretty and that she is sweet and kind and smart. She will also lovingly stare at you and sing in a tiny voice that just melts hearts. And she also has a strong-willed opinion on certain things and has an enormous amount of gumption!! I love that she will protest strongly things that she doesn't want. I would, however, like it to be in a more productive way than throwing yourself back, screaming, and kicking the crap out of you!! But it's baby steps :)

So, all in all, we've had some huge steps forward and have seen even faster advancements with the increased Afinitor. It's almost July which is when we do all of Lily's yearly exams...kidneys, brain MRI, dentist, opthamologist, and she will also have labs soon to re-check levels. Other than that, we are in a sweet spot right now that I hope continues. It seems that the bigger she gets, the longer the sweet spots...a light at the end of a very long tunnel!!

Still Riding!

Hugs for Daddy

Chuck E Cheese

This was her first time, and it was so fun to see her really taking in her environment and winning tons of tickets! 

Jungle Fun

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!