October 18, 2015

Infinite.

Today....I am feeling so grateful.

So often I wish we could see the end of our story. To see the words "Happily Ever After" and know that everything turned out just right. I know that's not possible to see the end. Right now....we are merely in the middle of a chapter of our story. And as hard as this chapter may be....it is filled with so much love on each page.



I have such a deep love for our sweet girl that my heart overflows. Most days...I am not very strong. But the sweet love from her and my incredible husband gives me the strength I need to keep moving. One of the many things that amazes me about Adalyn is her capacity to love. She doesn't care one ounce about looks....or about faults....She just wants to be snuggled close...and loved. In return....she simply loves...and makes you feel so incredibly lucky to be loved in that moment.
Heart. Melted. 

I know I may sound like a broken record.....but I am amazed each day at the effect of love. Love is infinite. The effect of one act of love doesn't just stop. It ripples through countless lives. We all have a need for that pure...unhinged...all bearing love. One glimpse at any part of the world today shows that all of us need that very love in our lives to get us through. It reminds us that we are not alone. That we are enough. That we are needed. And that we have a divine purpose. My heart is so full in knowing the love from our sweet girl has rippled into countless lives. At the same time...the love we have received has rippled into our lives in giant waves.
Her new chair. It makes her look like such a big girl!

And above all the hard this week....love is what I want to fill my day today. Not the sleepless nights....or the tears....or worries....or the constant seizures.

2 Corinthians 2:14
Now thanks be unto God, which always causeth us to triumph in Christ, and maketh manifest the savour of His knowledge by us in every place.

I love this so much. It gives me comfort. I can triumph. Because Christ's hand truly is in my life in every place. Even the times I am feeling unsteady...He keeps the pieces of me together...and helps me see the miracles I do have. The love in my life is such pure evidence of that.
This picture is a huge deal. Tummy time is rare! And sometimes rather hard to do. So proud!

And for this moment...I wouldn't trade it. My doubts are pushed away. I know that someday this chapter will end..... And the words "Happily Ever After" will come.

And all will be more than okay.....because love is greater.


This past week has had it's fair share of ups and downs. Most days have their incredibly hard moments and moments of simple peace. Complete opposites? I know. So...depending on the time of day....it could be an amazing day...or the stinky pits. The increased dose of medicine has seemed to help the past week. She can sometimes go a few hours without seizing. Yet each day....things are slightly worse than the day before...and we can see that the effect of this medicine might not be permanent. If she has a bad morning....she will have a good afternoon and evening...and a bad night. If it is a good morning....she will have a bad afternoon and an okay night. Meaning she is able to fall asleep after her seizure cycles.


We have officially received our admit date for next month to start the Ketogenic diet. We will be admitted to Primary Children's the second week in November...and likely be there for at least three days. Normally.....the main energy source for the brain is glucose. Ketones are the result of the body breaking down fat for energy instead of glucose. When the body goes into ketosis....it is typically a bad thing. You may have heard of diabetic ketosis. It can often cause brain damage and other organ system problems. However...the idea with the Ketogenic diet is to purposefully put the body into a state of ketosis by feeding the body only fat. This sort of forces the brain to switch it's energy source. In many kids with frequent seizures...this sort of "reboots" the brain and for some reason, helps to stop seizures. With Adalyn... they are not sure what will happen with putting her body into ketosis since her brain itself is so abnormal. It may make things worse. The hope is that it will help her.
Thanks to my dear friend's brilliant idea...I made these! She is real, funny wise beyond years. You can read more about her family here 

Putting the body into ketosis is a very fine line. Which is why we have to be admitted to the hospital. They have to find just the right ratio. Too much....and it will cause damage. Too little and there won't be a desired effect. Once she is in ketosis.....we will have to check her pH levels multiple times a day to make sure she stays in that sweet spot. To say we are nervous for it would be a slight understatement! But right now, I'm not thinking about that.

Thank each of you so much for your prayers. For believing in us. For helping us hold to hope. We have received such beautiful things this week! From the most beautiful flowers....to such tender pictures drawn by a little girl with such a big heart. We also had an amazing visit from some of our very best friends in Vegas. They drove two hours just to spend the afternoon with us. We truly have the best friends and family. Without all of you, we wouldn't be able to continue!




We love, love  this sweet family! They have done so much for us! Not only that...but they brought Adalyn so many clothes! Their little girl loved rubbing Adalyn's head. So adorable.

It made our day to get these in the mail! Thank you so much Steve and Katie for the love of your sweet family, especially your little Lucy!

Just because flowers from the Ashmore's....We loved having these to look at all week! They are such happy flowers!


And now....I'm going to go continue snuggling with my baby girl....and maybe even smooch my husband. After all....they're what it's all about. 

I love them infinitely. 


2 comments:

  1. Adalyn in that big girl chair is the cutest thing I've ever seen! She is growing up :) We love you guys!

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