Now where was I?
Hmmmm.....
In the last week (or so) we have:
~Had Grandpa and Grandma come for an early Easter.
~Had an Easter with the Cousins party with crafts, cupcake decorating, and of course, an egg hunt!
~We have also had another wonderful Geneticist appointment. Sigh...
Bottom line is, she still is TOO SEVERE for the type of mito she has, so they know they are missing something and there is more to her story. She also cannot be potty-trained since her internal organs are hypotonic like her outside and her bladder cannot be held. Lastly, she has apraxia which means that she knows what she wants to say, but cannot verbalize the words. She has lost a few words that she used to say already and this will progress until she is non-verbal. They recommended getting a computer based program and begin teaching her to communicate by pressing buttons on her iPad.
I can't even talk about it further, except to say. I HATE THIS DISEASE.
~Then we quickly loaded the car after her appointment, and headed to bed early with the lovely idea that if we got up at 3 AM to drive to VA the girls would sleep for several hours.
HA!
~Mom and Dad got up at 2 AM to get every last minute thing we might possibly need, and the girls in the car by 3 AM, and they laughed, giggled, and whispered loudly until at 4:30 AM we cried, "UNCLE" and turned on the movie. It was "game over" after that. No one slept with the sheer excitement of seeing their brother and Aunts, Uncle, Cousin, and Grandma Maggie.
~It was a LOOOOONNNNNGGGGG 10.5 hours.
~We rolled in to my brother's house, and I got to hug my brother for the first time since his accident on February 21st that left him in a coma for 7 days, and in the hospital for 5 weeks. I sobbed all the way up to VA just THINKING about seeing him.
~I. LOVE. MY. BROTHER.
~We had Friday night dinner with our son at our favorite restaurant, and headed to bed early for a little sleep before the Easter festivities began on Saturday with our family.
~Aria and my nephew Andrew are BEST BUDs. They instantly connect and pick up where they left off.
Look how much they've grown through the years!
~My sweet nephew cried when we had to say goodbye. I love that sweet tender-hearted boy!
~My amazing sister in law with Gianna, A.K.A. "Aunt Dani's girl" They adore each other.
~Unfortunately, I once again took NO PICTURES, so suffice it to say we had another fun Easter Egg Hunt that Grandma Maggie orchestrated, and Aunt Katy rushed from work to be with us.
Best. Day. Ever.
~We went to church on Sunday with my son, his beautiful girlfriend and her family and left right after the service to head home.
~Yes, we drove 10.5 hours on Friday, and again on Sunday just to be with our wonderful family for Easter even though Daddy didn't have time off from work to extend our trip.
~A 21 hour drive to stay THIRTY SIX HOURS.
~Yes, it is a well-established fact that we are crazy.
~And we'd do it again just to see those we love.
In the last week (or so) we have:
~Had Grandpa and Grandma come for an early Easter.
~Had an Easter with the Cousins party with crafts, cupcake decorating, and of course, an egg hunt!
~We have also had another wonderful Geneticist appointment. Sigh...
Bottom line is, she still is TOO SEVERE for the type of mito she has, so they know they are missing something and there is more to her story. She also cannot be potty-trained since her internal organs are hypotonic like her outside and her bladder cannot be held. Lastly, she has apraxia which means that she knows what she wants to say, but cannot verbalize the words. She has lost a few words that she used to say already and this will progress until she is non-verbal. They recommended getting a computer based program and begin teaching her to communicate by pressing buttons on her iPad.
I can't even talk about it further, except to say. I HATE THIS DISEASE.
~Then we quickly loaded the car after her appointment, and headed to bed early with the lovely idea that if we got up at 3 AM to drive to VA the girls would sleep for several hours.
HA!
~Mom and Dad got up at 2 AM to get every last minute thing we might possibly need, and the girls in the car by 3 AM, and they laughed, giggled, and whispered loudly until at 4:30 AM we cried, "UNCLE" and turned on the movie. It was "game over" after that. No one slept with the sheer excitement of seeing their brother and Aunts, Uncle, Cousin, and Grandma Maggie.
~It was a LOOOOONNNNNGGGGG 10.5 hours.
~We rolled in to my brother's house, and I got to hug my brother for the first time since his accident on February 21st that left him in a coma for 7 days, and in the hospital for 5 weeks. I sobbed all the way up to VA just THINKING about seeing him.
~I. LOVE. MY. BROTHER.
~We had Friday night dinner with our son at our favorite restaurant, and headed to bed early for a little sleep before the Easter festivities began on Saturday with our family.
Look how much they've grown through the years!
~Unfortunately, I once again took NO PICTURES, so suffice it to say we had another fun Easter Egg Hunt that Grandma Maggie orchestrated, and Aunt Katy rushed from work to be with us.
Best. Day. Ever.
~We went to church on Sunday with my son, his beautiful girlfriend and her family and left right after the service to head home.
~Yes, we drove 10.5 hours on Friday, and again on Sunday just to be with our wonderful family for Easter even though Daddy didn't have time off from work to extend our trip.
~A 21 hour drive to stay THIRTY SIX HOURS.
~Yes, it is a well-established fact that we are crazy.
~And we'd do it again just to see those we love.
You are not crazy my friend, it what we do for family and seeing your brother and the rest of your family is always worth it. I agree with you that I hate the disease that Celia has too.
ReplyDeleteSo, they are missing something...
ReplyDeleteCould they be looking in the wrong direction? How about a tropical disease or parasite?
I agree with Sue about being with family, even if it is for the shortest of times. Now about "mito" - my head knows all the awful things that the Dr.s and internet have to say (yes, I looked) but I choose to believe that my God is bigger than all their wisdom and nothing will happen that He doesn't allow. THEREFORE - whatever happens will be used for our good and His Glory. I will never forget our precious girl calling "gan'ma" and I will hold the vision of her smile in my heart. Even MITO can't take that away!!!!
ReplyDelete