I "heart" new speech goals!

Mary Kate gave us a new speech goal this week; to identify an object or picture by descriptors (instead of just the word.) Lilly was rockin' it with the flash cards we had.

I thought she was doing so well I would "push" a little harder to see what she could do - wow - Nana's been working that's for sure!

Shades "How 'bout that"

Mommy does love her school very much! I guess I talk about it a lot and obviously in a good light. I asked Lilly where mommy teaches and her was her response...


p.s. if you will note she also likes to turn the letter I to make an H...smart girl :-)

Marathon Love

Lilly's school, The Bell Center, receives the majority of their funding through one yearly fundraiser, The Mercedes Marathon. This year Jennifer Andress and my cousin William were her "partners in training." Together they raised almost $7,000 for The Bell Center!

On Saturday there was a 5K and then the Children's Run where all The Bell Center Kids ran "across" the finish line. After that there was the kids marathon. On Sunday Jennifer ran the marathon and William ran the half marathon. We saw many other friends that morning and I must say they are all amazing!

Here is a sample of the weekend and all the fun events!

Lilly saw Dr. Lane Rutledge (pediatric neurologist, geneticist...and metabolic expert :-) this morning for a follow up from her hospitalization Sunday/Monday. Her reflexes and tone seem to have returned to normal...for Lilly. It appears that Lilly at times will wax and wane between hyper tonic and hypo tonic especially during periods of illness. After her negative reaction to the spinal tap done Thursday in Atlanta, these reflexes were exacerbated by a small about of spinal fluid displaced in her spinal column against her spinal cord. The fluid sack pushed her cord anterior, causing extreme reflex changes, headaches and vomiting.
Have no fear!
Lilly will not be undergoing any more spinal tests including Lumbar Punctures or CT Milograms unless vitally essential to her health! As for now Lilly is walking, talking and responding normally and unless any of these things change...we are in the clear!
Have a Happy Holiday everyone! Thanks for your prayers and support!

Huge News

We just returned from seeing genetic expert Dr. John Schoffner in Atlanta. His preliminary analysis of Lilly's past muscle biopsy, MRI, CT scan, Blood work, medical history and current progress is that Lilly does NOT have a mitochondrial disease but instead a metabolic disorder.

Which one we don't know yet, so he ordered a repeat skin & muscle biopsy, lumbar puncture along with other tests that will give us, "an answer." These are words John and I thought we would never hear and we are so excited!

For now we are rejoicing in the fact that whatever caused Lilly's small birth weight (4.15), congenital hearing loss, low muscle tone and abnormal white matter in the brain is not a malfunction on a cellular level (generally poor prognosis) but instead on a metabolic level (treatable!)

It will be 10-12 weeks before the results are conclusive. At that time we will meet again with Dr. John Schoffner ( our hero ) and discuss treatment and management options. In the meantime we are adjusting some medications and approaching nutritional issues a little differently. Thank you to everyone for your prayers and support- from CMV, to Mitochondrial Disease to Metabolic Disorder - but you know what?! All the while, our Little Lilly has just been our Lilly! Thanks for helping us love her just the way she is...the way He made her! Peace!

Language Progress

Well folks, it's officially been one year since Lilly's 1st cochlear implant was activated. She is now 2 years old with bilateral processors and doing amazingly well! In fact her language assessments indicate she has the language of a typical 2 year old...and then some! Thanks to everyone for your continued prayers and support! There are so many people responsible for this rapid progress and you all know who you are! Love to everyone!
Lisa

Lilly's Language Explosion

Little Lilly sure does love her books. She studies and learns new words quickly. She was given a receptive language (words you understand) analysis test last month. At 21 months, after hearing for only 9 months, Lilly's receptive language measured as that of a typical 22 month old.

In 9 months Lilly closed the gap in her receptive language!
Incredible!
Stay tuned for updates on the expressive language (words you can say), results in November!