A lot has gone on since we brought Mikayla home. But God made sure she made it safe and sound....She slept all the way from Cook's to the house which was
an hour and a half drive. We love all of the people at Cook's and miss them very much, but we are so much more comfortable at home....and so is Mikayla.
Her seizures lessened, her heart rate is better and though we have days that are good and days that are somewhat rough, this is the best thing we could have
done for her!
Most of you already know, but for those of you who do not, we got the test results in just a few days ago. Our sweet little 3 year old Morgan has Alpers as
well. Madison, the 1 year old does not- (*she isn't even a carrier of either mutation). I knew in my heart about Morgan, and Madison I just wasn't sure
about. It's hard to take it all in. VERY HARD. People keep talking about how strong I have been, but if I ever were to fall apart- I doubt I could pull
myself back up....and I don't know if I'm strong...but I am a mother, which means I'll do anything for my girls.
John and I were also tested and he carries a gene, and I carry a gene. The geneticist says that most people carry about 12 bad genes, but the "matching" of
two of those genes is not as common. But I happened....and here we are.
Where do we go from here? I am not sure. We are still researching and looking, however we do not want to take away any valuable time we have with Mikayla.
It's hard to balance it all because if there is a cure or way to slow it, I do not want to overlook it. If there isn't, I don't want to take time away from
them because I was in a frenzy trying to find it.
We are planning on going to Houston, where there is a mitochondrial expert. One who will see the girls. Mikayla is not able to travel via car right now so
that poses a problem, BUT we will figure out something. We are hoping that the labs they would do, we can maybe do at a clinic here. Once they do them,
it will show areas where they are deficient and where they are not. Not only does this give us an idea as to their own health, it may aid in future
Right now, Mikayla is getting sodium chloride to help her level even back out, but we do not know what else might be deficient since she has not had
a complete panel done. It could prove to be very important!
I think right now the hardest part is seeing Morgan laying next to Mikayla holding her hand, and us knowing that it is a glimpse into what her future holds, if
we can't find a way to stop this horrible disease.
I never thought I'd be losing my children. I lost one at full term before John and I married, and it was not related-and now here I am losing two more.
Keeley would have been 8 this past October.
Losing someone is so different in so many ways for each person. With Keeley, I never saw the color of her eyes, or heard her first words...She passed
two weeks before she was due. But I remember every wrinkle in her toes, the little curl in her hair, and the way she felt in my arms. It's like
a mold you can always feel when you bend your arms a certain way and think about it.
So now I can say, that it's hard no matter what side you are on. You lose one that never goes out and lives, and you always have an empty place
where you wonder what their personalities would have been like, what their favorite things would be.........and then you find yourself on the
other side- Knowing how happy and normal they were, how easy they were to please and how God couldn't have given someone better children.
I've lost, and I'm losing-neither is any worse or better....But God let us borrow our girls, and never said how long any of us have. It doesn't
resolve things for me-but it keeps the pieces from crumbling.
In all of this time, John and I have been literally showered with love by our whole community and people all over the world. There are so many
churches and individuals praying for Mikayla and Morgan- it is amazing.
Our girls have been our world, it is all we have focused on since the day they were born- So we didn't get out a lot and socialize, we never had
a babysitter....as a matter of fact when Morgan was born we took a playpen to the hospital and Mikayla was there for it all. People offered to let them
take her while we had Morgan, but we just didn't want her to not be there with us.
It wasn't until Mikayla started being hospitalized that we finally decided to let Morgan and Madison go stay with their PaPaw.
We can count on both hands the number of times they've actually stayed with someone besides us....We just love them so much, and are probably
overly protective- but now there's something we can't protect them from- something slipping in and taking their lives and we can't do anything
but hold them and comfort them.
I dread the day we start all over and see a perfectly happy little Morgan start to seize the way Mikayla did. I pray we don't have to, I pray
there'll be a cure or something.
I think of the Shanahans and what they went through with Brendan and Liam, and I even feel fortunate because we know now with both that it was Alpers.
They did not know what took their first child until their third one came down with Alpers and they tested for it. (brendanandliamsgift.org)
In going through all of this, we've had a community do so much for us. We are still in shock. Everyday someone we don't know shows up at the door
with Chicken Express tea and a hug. So many donated at the Bosque River center last Friday, and people would come by and tell us of a little girl
dumping all the change in her purse into the donation jar, or the Radio station owner getting choked up about the nice people who wanted to help-
I can't count how many times my husband and I cried tears of appreciation for all of the stories and the generosity.
Our local Newspaper, The Empire Tribune has covered the story of Mikayla, and now Morgan- and we just feel so touched that our girls are loved to
Thank you Erath County. It hasn't mattered if it was a penny, or a thousand dollars- We know it came from your hearts, and that you gave so willingly.
Words will never begin to express how it has changed us inside.
(* And of course Sam and Lanell Upshaw are some really special people, along with Chayla Eudy, Eric Burleson and Family, and Leslie Hughes....
I could probably list people for weeks, and for fear of accidentally leaving someone out THANK YOU ALL!)
We've had a lot of people ask us what our first big purchase is going to be, and we are at a loss for words. This money is not "our" money,
it is Mikayla and Morgans. We will use every penny of it to make sure they are getting all the treatment they can and to keep from having
to worry if there's one day a treatment that we don't have the money for- It is the girls money- and I promise you all- It will be spent
Thank you for all you have done- We wish we could do more to show our appreciation....but I will say that it is so nice to go to sleep beside
Mikayla and know that if we need to gas to travel- there's more than enough money there to do it with. After Mikayla's
first big seizure in September I lost sleep on so many nights for fear of not having enough gas in the car if there were an emergency.
Now we can focus less on money and more on just the girls.
For those of you who didn't hear: They raised $26,000 Friday. One day. How amazing is our community, and friends!
(*I also want to thank Dr. Perry and Dr.Donahue again. They keep cutting our thank you's out of the aired news!-So we'll say it here again
where everyone can read it ----- THANK YOU ----- We don't regret the surgery and Mikayla said Mommy last night! She always says daddy,
so that was a moment I'll never forget!!!!!- I wouldn't have heard those words without you guys!)