A little update!

Hey everyone!

I wanted to give ya'll 

a little update on our warrior!

He is doing well right now. 

He had another MRI last Tuesday,

and another EEG the week before

that to recheck the status 

of his brain acitivity.

His wonderful neurologist

stated that the EEG showed improvement

in his seizures, due to the medication 

and the ketogenic diet Liam 

is on!

PRAISE THE LORD!!!

That was soooo 

wonderful to hear.

His MRI still shows the cerebral atrophy

which is deterioration of

 the tissue in his brain.

He did get one test back,

from the HUGE assortment

of tests that were sent when

Liam was hospitalized in March.

It is a POLG test;

POLG is the gene that codes for the

catalytic subunit of the 

mitochondrial DNA polymerase,

called DNA polymerase gamma.

The POLG gene is also a disease

locus for several mitochondrial diseases.

Mutations in the POLG gene are associated

with several mitochondrial diseases,

including Alpers' disease, 

ataxia-neuropathy disorders,

and dominant and recessive

forms of progressive

external ophthalmolepia.

Liam's test was normal, 

no mutations in this gene.

His neurologist still believes Liam's

 cerebral atrophy is due to a metabolic

disease and is awaiting the final 

test results from Liam's genecist.

We see him June 7th.

The length of time these tests is taking

is not abnormal. 

Liam has something that

is extrememly rare.

And we are being very patient and helping 

him along the way.

A state-funded program

called "Babies Can't Wait" 

provides physical, occupational, and speech

therapy to children and infants with

disabilities, and they come to your home!

So, we are in the process of getting Liam 

started to help with gaining his head control

back, along with eating from a bottle again.

We are pretty excited to see him

improve each day!

Please continue to pray 

for our sweet, brave warrior!!

My sweet boy after his MRI, 

he did great!

He was sedated for about 45 minutes,

and awoke very quickly. 

:)

 McKenna reading "Tangled"

 Peek-a-boo baby toes!

Sweetest picture ever!

McKenna absolutely loves

to lie next to her brother

and smell him. She 

said he smelled like

cookie dough.

His keto diet smells exactly 

like a vanilla shake.

YUMMM!! 

 Holding hands! AWWWW!!!

 Summer is on its way!!

Splashing Daddy in her pool with

FREEZING water. 

She had just a little too much fun.

:)

Also, we had a wonderful miracle last week!
Liam SMILED AND LAUGHED
while Michael was holding him in the kitchen.
It was truly miraculous!
I BAWLED my eyes out!
We have not seen him smile since
he was 10 weeks old, 12 weeks ago!
And that was his first laugh!
We're so close to BIG things happening!
:)

Love to all of you!

The 25 Greatest.

This Mother's Day

 was indeed the most special one to date. 

I knew my soul~mate and beautiful children

 were going to give me cherished gifts, 

but my only wish was for Liam

 to still be in my arms for next Mother's Day. 

I know he will be, 

but I prayed to our most trusted Healer

 to help him grow

to be a beautiful, healthy, gifted boy.

I was so emotional, 

I only thought of my children 

and the man who helped create them, 

and I wanted nothing more than 

to have them wrapped in my arms 

for many more Mother's Days. 

A beautiful, sweet boy named Hudson, 

who also has mito,

 was at the walk on that beautiful Saturday. 

He passed me while he slept in his wheelchair, 

I smiled at his peaceful, beautiful face.

He only lived six more days, 

and peacefully went to be with his Creator.

I wept for his mother on this Mother's Day,

and prayed she was comforted by those that loved her most.

 I was given two beautiful Willow Tree figurines

to add to our collection. 

The moment I unwrap each one, 

I get weepy.

Each captures exactly what I'm feeling

in that exact moment.

My arms wrapped around my children 

or my loving husband.

I am truly gifted.

A beautiful ring of Holland's windmill 

in a flower design.

A stunning necklace with a windmill in a flower

with a sweet little bird flying toward it. 

Another windmill necklace with a dangling teal tulip charm.

A super awesome messenger back with 

a great picture of 

"Mito Kids Rock!" 

 We decided that morning

to take Liam to the aquarium to see 

all the soothing fishies.

He was actually awake for most of the fun!

The coolest dolphin ever!

McKenna was so excited to finally see the dolphins!

The 25 Greatest of My Motherhood.

1. Awaking in the morning to McKenna climbing into
my bed after she's awakened, to snuggle
2 .Listening to Liam awaken in the morning

 and hear McKenna say
"Ahhh, someone's awake! He wants to see his sissy!"

3. Kissing Liam's belly and lips

 while he's lying on his playmat

learning to focus again on me and his toys

4. Watching McKenna kiss his soft forehead

5. Holding his little hands and 

caressing his tiny dimples on his nuckles

6. Listening to Liam coo again

7. Rocking him to sleep as he drools on my chest

8. Preparing McKenna's meals and

watching her fill her little belly

9. Applauding her after she's drawn a masterpiece

with so much pride

10. Bathing Liam and massaging

 his little legs and arms with lotion

11. Drawing up all six of his medications knowing he is 

improving each day

12. Shaking his little boxes of special formula 

and mixing them for his tiny belly

13. Holding him and patting his tush to relieve 

his painful gas

14. Squatting down waiting with open arms 

for a huge hug from McKenna after she's 

been at her Grandma's for hours

15. Washing her long blond curls in the tub

16. Waiting for her to use the toilet first,

since she always suddenly has to pee right when I do

17. Sitting while she does my makeup and hair,

telling me "You're Going to be soooo Gorgeous!"

18. Washing dishes or syringes in the kitchen

and feel my soul~mate's arms caress my neck and back

when he's just arrived home from work

19. Listening to McKenna tell her brother,

"Who's the most handsome sugar~pants?"

20. Walking around the neighborhood when 

Michael's arrived home,

listening to McKenna 

anxiously await the bunny sightings,

and Liam coo while getting his early evening feed

21. Laying my sweet beautiful boy in his bed, 

and making him super cozy with a dryer~warmed blanket

and gently kissing him goodnight

22. Helping McKenna dispose

 of her freshly~picked boogie properly

23. Snuggling in bed at night with my treasured 

husband and daughter watching 

her favorite show, settling down for bed

24. Reading her a story in her bed and rubbing 

her back as she drifts off to sleep

25. Falling asleep with the man who made me a mother

and his strong arms wrapped around me tight

assuring me peace throughout the night

God Bless all of the wonderful mothers
and Happy 5 months to my beautiful warrior!!

All Aboard For A Cure!!

We had the most beautiful day on Saturday!! 

We drove to downtown Norcross for the Energy For Life Walk

 to celebrate the lives of all children with mitochondrial disease!

 It was such an awesome event! 

It was a gorgeous day, not too hot, sun shining down on all of us,

 and such beautiful children and families to meet! 

The walk was one mile because many children can not walk very far, 

we all walked with pride and inspiration and love. It was so amazing!

They had so much for the kids to do! 

Animal balloons, face painting, spinning paint art projects,

raffles, jumpy castles, and more I can't even remember!

McKenna was all over the place with excitement,

 so we didn't get many pictures.

Starbucks and The Flying Biscuit provided coffee and breakfast

Oh my how yumtastic!!!

 At a stop while the train goes by. My sweet babies!!

The beautiful warrior in his stroller walking for mito kids!

We submitted a picture of our warrior to the committee so a sign could be made!

It turned out SO STUNNING!!! 

Signs of amazing children were all over the park and walk route!

Michael and I both cried when we came upon our sweet boy!!

He's famous!!

Jessica Phillips, our very dear friend said this about our boy, 

and we just had to quote her on his sign!

Here's a closeup of the sign!

The silly girl!!

She was just too funny on that thing!

Someone was tuckered out when we got home! Precious boy!

We also had McKenna's March of Dimes walk the same day and time, so we couldn't do both.
We decided to make a short appearance and turn in our donations to them and head to the UMDF walk.

Thank you to all of you that donated to help our sweet girl and boy, and all born too early 

and lots of precious kids with mito.

WE ALL RAISED $400 for March of Dimes
and $1175.00 for UMDF!! 

That is truly amazing, 

since only one month ago, we discovered this disease.

Our hearts just overflowed with emotion and we're in complete

awe with all of your generous donations.

We learned that the largest team at this year's walk was 72 members,

and they raised over $14,000!! 

My friend Haley said, "Yeah, next year we'll have 80 team members

and we'll raise $14,500!!

She is right!

 I'm so excited to form our team next year, 

Tshirts, banners, bracelets and all!!!

We will ROCK IT OUT NEXT YEAR!!

Thank you again all of you!!

 Beautiful pictures taken by a photographer at the walk!

"Every child is gifted, 
They just unwrap their packages at different times."
-Unknown


"Turn your face to the sun,
and the shadows fall behind you."
- Maori proverb


"Before you were born, I set you apart."
-Jeremiah 1:5