Neuro Appointment

All went well at Lily's appointment today! No med changes since she's doing so well! MRI will be in July. Also, we don't have to do an eeg this year unless there are changes! Renal ultrasound will be in July and we'll set up an appointment soon with a new ophthalmologist to verify that her eyes still have no tumors. We love her neurologist and the entire team!!! Yippee ---now on to more fun and adventure in the beautiful Pacific Northwest!

Happy Days!

Lily is still doing great trying to feed herself! We're trying other foods because, despite the desire, no one can live on cookies alone! However, she doesn't seem as motivated to pick up zucchini. :) She's also eaten a pb&j and chicken pieces! Lily is also in a fabulous mood--full of laughs, playing with toys, and getting onto her hands and knees more! She has a neuro check-up today so I'll update more later!!! Hooray for progress! Also, Alicia and family: thank you for your constant support, prayers, and cheerleading!!! We love you!!! And thanks to my mom who takes a phone call every time Lily does even a tiny new task!

Cookie Monster

Don't take anything for granted, even your ability to pick up a cookie and eat it!!!

Team Lily in OKC!!!

Thank you Don, Deidra, and Lisa for sporting your Team Lily shirts!!! You're awesome and sweet! And thank you again for your donations to her Seattle walk! Lily is lucky to have you as family...no matter how many miles are between us!

Miracle Cookies on Memorial Day

We have been working for so many months on teaching Lily to feed herself.  This would give her so much independence on what and how much she eats, and it would also free up more time for us, as it takes sometimes more than 4 hours a day to feed her.  But we did not want to get a g-tube...we believed that Lily would feed herself and since she was able to maintain a healthy weight with us feeding her, and we felt like it would slow down her ability to eat and feed herself---it turned out to be the best choice for her and our family. A few weeks ago, we stopped doing most other therapies and just focused on eating, using her hands, sensory integration with her hands etc.  Well, on Memorial Day we went to dinner with our neighbors (who are astoundingly good cooks)! Since we were having a holiday cheat on our diet, Becky made some scrumptious chocolate chip cookies.  I gave Lily a bite of the cookie and placed it on the highchair tray and resumed talking to Becky & Garth.  When I looked over, Lily had picked up the cookie and was attempting to eat it.  She wasn't able to get the bite in the first two times, but then she picked up the cookie again and took a bite.  You know when you're on a roller coaster and the you lose your stomach and feel like you're outside of your body for a second? This is the feeling that washed over me.  I put my face in my hands and tried to steady myself.  This was the happiest feeling I have felt in a very long time...hope coming to fruition. Lily was also wearing a brand-new $40 dress and was smearing chocolate chips all in the white and light pink design and all I could think was GO ON LILY--SMASH IT!!!! She got up this morning and is continuing to feed herself (of course, she's unable to do the whole meal since she's still learning).  I was up until 2am watching the video of her taking a bite over and over and over, and I still cannot remove the goofy grin off my face!!! I'm over the moon!!!

Ocean Retreat

Lily has really been feeling great lately and seizures have been at a minimum (0-1 a day). Some days we're going 2-3 days with out a seizure. It's always nice to have a break! We've had breaks like this before and then the seizures would start pounding down again, but I have learned to take in these moments and enjoy it, regardless of its length!! So we were more than excited to drive out to Ocean Shores with Scott and spend a few days on the beach! There is a wildlife area near here and a beach known for being a great whale watching destination. Getting out in nature is always our (including Lily) favorite thing to do. It seems to calm all of us!! So if you don't hear from us this weekend, it's because we're out exploring the woods or on the beach! NOT in a hospital!!!!

Doing So Good Today

Lily really had a great day today! Her teacher Mrs. Sharon (we adore her) shared that Lily was doing great with using the iPad to communicate.  Lily knows at least the first 6 letters of the alphabet, her numbers 1 - 5 and about 6 colors...she sometimes knows a bit beyond this, but not with the same amount of consistency.  Today is day 2 without a seizure, and I so appreciate a reprieve from them.  We know that the breaks are short-lived, but we have such appreciation for Lily getting a chance to have a day without them! Tomorrow Lily has an ENT appointment; it's just a follow-up after the tubes. Also, I mailed all of the Team Lily shirts today....thank you to all of you who support us and are our amazing village...we couldn't do it without you!

Nephrology Lab Results

Lily's nephrologist called today and said that the lab work shows the uric acid in her kidneys is high, and she believes Lily inherited my tendency for kidney stones. Lily is taking Citrate three times a day, this will help control levels, and we'll just continue her current regiment for now. In July we will have another renal ultrasound at Seattle Children's and see the nephrologist to see how things in her kidneys are progressing. Also, her kidney function, vitamin D levels, and para-thyroid tests came back normal. Hooray! We love good news!!! 

Rainy Sunday

It has been a relaxing rainy Sunday. Lily has only had one small seizure today , and she seems to be feeling really good today. She took a long nap, and then we worked on coloring butterflies while doing laundry. Sometimes it's nice to be home and just sip coffee and relax and do very little!!

Northwest Trek

Took Lily to NW Trek today with the lovely and very helpful Sarah. We had fun and I think Lily really enjoyed Sarah being in the backseat with her! She had a strong seizure in the gift shop but it passed pretty quickly and Lily recovered well and moved on. She's a tough girl; I admire her strength. Now we're off to dinner with our awesome neighbors!

Jelly Belly Dance!

Lily picked up a jelly bean and ate it! She tried a second time, but didn't get it in...she's still trying! Happy dance!!! This right here--these moments--this is why you never give up!!!

Physical Therapy--the Good, the Bad, and the Ugly

Today was Lily's first physical therapy appointment with the school district therapist.  First, I must say that the therapist is a kind, gentle woman that gave Lily breaks and tried to be as soft and easy as she could.  Today she did some basic stretches and positioning with Lily, and it was grueling.  Lily screamed, kicked her legs, cried, begged with her eyes---it was absolutely miserable.  I could tell that it was overwhelming her, and frankly, this was probably the most angry and upset I've ever seen Lily outside of a hospital.  It really broke all of our hearts knowing that she must do these therapies in order to learn to walk and yet they make her so upset.  I could feel the beads of sweat starting to drip down my forehead as I, too, started to become overwhelmed by how hard this was for Lily. Mind you, the therapist was doing just about everything she could to comfort Lily while still carrying out the physical work.  When it was all finished, I grabbed a big down blanket, turned on a movie, pulled the blinds, and fed Lily a few cookies......sometimes you just need to be cuddled and spoiled--this was one of those times for sure!

Love to Swing

Lily not only loves her indoor swing, it's also great at prepping her for school and other therapies. She swings for 15 minutes twice a day and that's followed by sensory brushing and joint compressions. This gets her sensory and vestibular system ready! It's amazing what a difference it makes for her.

Butterflies and Beautiful Bows!

Headed out for the zoo on Tuesday! She slept through most of it of course but we all got some much needed sun!

Lily Wants to Talk

Lily can now say two words: uh-huh and yeah.  She also uses them purposefully.  As in Lily are you tired? yeah.  At 3 she doesn't really talk, but we know that she understands a lot. In fact, if you ask Lily to use her hand, she will. Or if you tell her that she's pretty, she will smile and turn her head away shyly.  It really shows us that she's understanding!! She's also still using the iPad to communicate and it has really allowed us to know what she wants and needs.  She is also babbling so much better (dadada and mamama and a bit of gabadama (that's a step toward talking!)...even though over the past few days she has been having about 3 seizures a day.  This is probably due to the drop in zonegran--she was too high and now we may need to raise her keppra or clobazam.  We just keep reminding ourselves that moving forward slowly is still moving forward!

Nephrology

Lily had a new nephrology appointment today.  It appears that she may have nephrocalcinosis (too much calcium in her kidneys) that could lead to kidney stones and other issues.  She is on a citrate medication to try and control this, but more testing will need to be done to understand exactly what is going on.  So today she had a catheter to double check for a UTI (it was clear) and a long a grueling blood draw (testing med levels and many other things).  She cried through most of the appointment.  It was really a difficult day.  By the time we got home, Lily was so exhausted (as were we).  The doctor has recommended that we have another ultrasound in July to check her kidneys.  The white spots on her kidneys could be kidney stones or they could be cysts associated with tuberous sclerosis.  We will just have to wait and see.