Signs of Improvement

I am scared to even utter that Alex seemed a little better this week in fear of jinxing it! While we are still dealing with pain, switching his hydrocortisone to IV seems to have helped his overall fatigue and crappy feeling a bit. We are trying to use this reprieve to fit in some fun!

Mommy's best helper loves to make her own formula!

Some days I don't know what to do with this sassy girl!

Six Flags with the Glenn's. They are the best thing to come from our trip with Kidd's Kids!

Feeling and looking a little better!

Ready for school and rain!

Zoey got a haircut!

Happy 100th Birthday Cook Children's!

Easter Egg Hunt at School

An Amazing Morning with Kidd's Kids!

Somebody got glasses!

We head to Houston this week and our hopeful for some more answers/improvement for our doctors who know these kids (and Mitochondrial Disease) SO well. Please pray for safe travels and continued improvement for Alex.

Ali

Desperate

Desperate is the only word I can use to describe how we are feeling these days. We just cannot get Alex feeling good and we feel so alone and frustrated. We desperately want relief for him. I want my spunky boy back. I want him to be able to enjoy his activities and life. This is so unfair. He is being a trooper and trying to make the best of it, but his energy level is really low and he struggles to participate in anything for more then an hour or two.

Our weather has been beautiful, warm and sunny. We decided last weekend to head to Six Flags (I had purchased Season Passes last November as Christmas Presents). Maddy had so much fun. She loved riding on "her rides" with her big brother. She LOVES him and is always happy to spend time with him.

Maddy couldn't make her plane fly!

The swings were her favorite!

We didn't ride anything for Alex as he started to feel bad by the time we got a few rides in for her. Hopefully, next time!

We spoke to our endocrinologist in the middle of the week. He is switching Alex's hydrocortisone to IV form in hopes that he will absorb it better and start to feel better. I am so hopeful this will be the start of Alex feeling better.

On Thursday, Bruce's sister Cassie was supposed to come visit for a couple of days. Unfortunately she came down with the zoo and we weren't able to see her! We were all sad. Hopefully, we can reschedule soon. 

Yesterday, we had a doctor's appointment in the morning. We snuck some quick hugs from Karol, one of our favorite people who works at the foundation. The we headed to meet some friends at the zoo. Again we only lasted about an hour, but at least we are trying to squeeze in some fun!

Mad and Ralphie

Maddy's favorite play room at the hospital

Maddy is always happy to see Karol

Alex loves this sweet friend!

He really is the best big brother.

Alex's Favorite

Mad's Favorite

Maddy and Sloane

This girl loves a carousel!

Please continue to pray that Alex feels better!

Ali

Blessings Abound

I am going to start with the tough stuff. But I promise I have lots of good...Just hang in there.

This is a song by mark Schultz called He's my Son:
I'm down on my knees again tonight,
I'm hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scaredLet him know that You're there.

For anyone who doesn't have to raise a child with chronic illness and pain, It is heart wrenching. Mom's are supposed to be able to make things better. It makes me so sad that my son has to hurt every day and we can not find him relief. And yet every day I watch this child clothe himself with strength and bravery and determination to not only find a way to enjoy life, but to make a difference in this world. 

I have blogged countless times about the good we see on this journey and it is usually about he amazing selfless people we meet.  This last week was full of reminders of how truly blessed we are. It started last Saturday with Dance Marathon at Texas Christian University. DM is my favorite event of the year. College was an awesome 4 years for me. I loved every minute. And yet it never occurred to me to take 12 hours on a Saturday and countless more hours throughout the year to give back to our children's hospital. These young adults inspire me with their love, with their commitment and with their generous hearts. I see my younger self in those kids, full of dreams and love chatting with them and thanking them for their dedication to the kids at Cook Children's Hospital. For so many of the students at TCU, this fight is personal. One of the students who was instrumental in starting DM at TCU was a remarkable young lady named Taylor who was battling cancer. She passed away the morning of our first Dance marathon. I have had the privilege of speaking with Taylor's family the past few years and we see so many similarities between Taylor and Alex...two children who deserved so much more from life yet always find a way to CHOOSE JOY! Dance Marathon is a day filled with joy, with laughter, with tears and oh so many memories!

On Thursday Alex and I headed to the hospital to film some footage to be used for #ChildrensHospitalsWeek. (Some of you have already seen some of it on Facebook- Cook Children's Health Foundation Page) We love to spend time with our "girls" from the foundation. They are so much more then Cook Children's Employees. They are our family and we couldn't love them more. 

Saturday was supposed to be about Alex, but as often happens when a fiery, four year old is involved it kind of became about Maddy! Several weeks ago we were connected with an organization called Texas Hunt for the Cure. They take sick kids on Hunting and fishing trips. Alex couldn't bear the thought of killing an animal so we decided to go on a camping trip with them. (We will combine our trip with our friends the Glenn's to make it even better). As I spoke to Stacy about the upcoming trip, he asked why I didn't fill out an application for Maddy. I quickly explained she is only four. He asked what she would like to do anyway. Maddy has been begging to go horseback riding. She has told us countless times her dream is to ride a horse. Stacy assured me he could make that happen. Back to Saturday...Saturday was Texas Hunt for  the Cure's Annual Family Reunion. They invited us out since we have an upcoming trip with them. Alex wasn't feeling great and the Glenn's had two sick kids so he wasn't in the greatest of moods, but tried to make the most of it for his sister. Maddy got to ride a horse-Whalen. She LOVED every second. Poor Gene, the horse owner had a shadow all day. Maddy was not the least bit scared and got to ride several times. Mr. Gene has promised that when we do our weekend camping he will bring the horses back out and take Maddy on a much longer trail ride! I wish Alex had felt better, but the property was BEAUTIFUL and the people involved in this organization are some of the nicest, most genuine people you could ever meet!

Thanks for walking this crazy, amazing journey with us!
Ali