"Mito" Bracelets

Emmy made these cute green bracelets to sell at school to help Will with his medical expenses. She is so thoughtful! Emmy made $80.00 off the first batch of green "mito" bracelets. The reason she used green is because "green" represents all mitochondrial diseases. What a kind cousin Will has!!:) Thank you so much Emmy!!

Sleeping Beauty

Lauren taking a nice loooong nap in my arms today. She is just adorable!Looks just like a doll!

Sleeping Beauty!!:)

Beautiful Lauren

Lauren is such a good baby! She LOVES to play on her mat and look at all of her fun toys. She hardly ever fusses and smiles all the time. She is trying to verbalize when you talk to her. She is so smart! She is growing so fast! Lauren already weighs almost 13 pounds and is 2 1/2 months old!

Soooo cute! Love you Lauren!

Emmy,Will & Jax

Emmy, Jax and Will were playing on the bed this morning. Will was watching Emmy play a fruit ninja game. We were trying to get Will to slow down and relax so he could save his energy for the afternoon. It seemed to work! Will had an awesome day today!! We are blessed! 

Emmy, Will & Jax

Will & Mom

Here is a cute picture of Will and Kasey when he was in the hospital recently. This picture was taken before the MRI and before the results came back for Leigh's Disease. Everyday he is such a happy, sweet little boy! The last couple of days have been pretty rough. Today especially. Will had an episode that lasted longer than all the previous episodes. He just went totally limp for a couple of hours. So sad! He is asleep now, so we are hoping with a good night's rest his body will recuperate and he will feel much better in the morning.This is so discouraging! We are going to request a feeding tube on Monday. We all believe this will help Will nutrition wise. He is not eating at all and his little body just can not function without any nutrients. Please continue to pray for this precious little angel! Thank you so much! 

Will and Mom at hospital. We love you Will!!:)

                                             

Off to see Will & Lauren:)

I'm off to spend some time with Will & Lauren! It will be nice to hold Will again and have Lauren fall asleep in my arms for hours.:)

The weather is not good today, so I'm praying the flight won't be too bumpy! I don't care for flying, but I am getting better at it since I have been flying quite a bit lately.:)

I plan on posting more pictures of the kids when I get there. I'm not forgetting my camera this time!

Kelsey, George and the kids are leaving Thursday to go to Kasey's house. We will have a lot fun with all the grand-kids together! Ed wishes he could go, but he is needed at work, and Ryan needs to stay for an upcoming field trip. Ryan will be keeping Ed company. I'm sure they will have fun together. Late nights and lots of movies!!:) Yay Paw Paw!!




Beautiful Lauren!

God's "Will"

I am extremely saddened to say last week we received devastating news concerning our 2 year old grandson, Will. Will was diagnosed with Leigh's Disease. What is Leigh's Disease? To put it in simply terms, it is a genetic disease that affects the mitochondrial DNA in the body and the central nervous system. It's as if you are running on a low battery all day instead of a fully charged battery. You have zero energy. It is very rare and there is no known cure at this time. 

All the pieces of the puzzle are now coming together. Kasey has suspected something was wrong with Will, but couldn't put her finger on it. Numerous trips to the pediatrician discussing Will's growth and tiredness was brushed off as being within normal limits. Now, Will  being diagnosed with Leigh's disease makes sense!Will has tremors in his hands at times, is very small for his age, and lately says, "His legs don't work". These are all symptoms of Leigh's Disease (Syndrome).

We had never heard of this horrible, debilitating disease until last week. Our perfect little world literally turned upside down when we heard the diagnosis. My heart is heavy with utter sadness for my daughter and her husband!

I'm asking for anyone who reads this to please pray for their strength and for a miracle for Will. The power of prayer is awesome! God has sent us this precious little boy for a reason. Dr."Will", he wants to be doctor when he grows up, is a fighter, just like his parents. 

We intend to make Will's life as special and normal as possible. Everyday we have him with us is a blessing. Anyone that meets Will falls in love with him! He has an enormous heart full of love and an incredible positive attitude. He is also very, very bright! He could say the entire alphabet before he even turned 2!:)

We are not sure what the future holds for Will, but we know while he is here in our life, he will be loved exponentially!! God has given us Will and we all feel blessed to have him in our life. This is God's child and we pray that a cure will be found for this precious little angel and all the other angels affected with Leigh's Disease.

We are focusing on the positive and intend to enjoy and relish each and every day with God's"Will". God is good!

Will the day we brought him home from the hospital. God's "Will".

Myself and Will in October 2013.