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!

News Break!!!!

Lilly is taking more chances with her standing & walking!
We are super excited!

"Mo, doo, fee!"

Now only 9 months after receiving her 1st cochlear implant, (only 4 months w/2) Little Lilly is counting! 1-2-3!!!

Lilly & Scarlet

It's a good thing Lilly has Scarlet...or is it Scarlet has Lilly?!? These two are cracking me up entertaining each other around the house. Scarlet will be 13 this November - she's a trooper!

Lilly Loves the Lake

Bedtime reading

It's been a while since the last video, I know, I know. Less than 3 months since her 2nd cochlear implant activation, Lilly's progress is nothing short of amazing! She has mastered her power word lists and learned so many animal names and sounds, fruits, transportation, bathing and playing language, simple requests and commands, please and thank you,- whew! It's astounding how quickly her language and speech is developing!


This is all thanks to Nana who works diligently with Lilly in all her areas of development but especially in speech-language & gross motor. I am enjoying the summer weeks getting to spend this amazing time with her. I must admit, bedtime is still my favorite time. We have a bedtime routine that always includes reading books and having great conversations about what we see...enjoy!

Singing with 2 ears!

The day we got 2 ears was difficult for the seed to adjust!
She kept whining and crying but would still sing her favorite songs when given the verbal cues - so cute! (And dedicated!)

2nd Cochlear implant activation

Merry Christmas

Lilly's first hearing Christmas!
It's a whole new world!

Amazing grace

An oldie but a goody!
Only 6 weeks after her cochlear implant activation Lilly begins to recognize sound and even points to her ear to say, "Hey, I hear something!?"

24 hours post op- 2nd time around

This was shot 24 hours after Lilly's 2nd cochlear implant operation. We are truly amazed at how
resilient she is! She has had a bath, new dressing and we found a creative way to attach her 1st implant so that she won't have to be deaf again! Her activation for implant #2 is March 24th. The 2nd one will give her the ability to better localize sound!

Listen to Lilly!

Less than 4 months since her cochlear implant activation Lilly is making so many sounds that vary in pitch, tone and intonation! At the end of this video you even hear one of her 1st words!

I love my Daddy!

Welcome

Hopefully here we can keep everyone posted (even the anti-facebook & YouTube forbidden!)
Stay tuned!