Alex and Maddy

Alex and Maddy

Saturday, March 17, 2018


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!

Wednesday, March 7, 2018

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 scared
Let 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!

Friday, February 23, 2018

Travel X2

This has been the craziest couple weeks.

The kids are on the mend. Thank Goodness! Maddy has recovered from her sinus and ear infection and was back at school this week. She was so happy to be back after missing two weeks. She is still having some leg pain, but we are hoping our Mito specialist can figure that out when we see her. In the meantime,  we are just trying to help her however we can. Alex's stomach pain is stable. i don't know that I would say it is better, but he is tolerating it and trying to join the land of the living. We have seen both our endocrinologist and GI over the past two weeks trying to get him to a better place. Our major concern is with Endocrine. Alex's body does not make cortisol. He receives hydrocortisone everyday and gets more when his body is "stressed" in any way. Not enough cortisol sends him into a crisis and shock. He has been in shock in the ER multiple times in crisis. It is one of the scariest things we deal with because it could be fatal at any point. He is struggling to absorb meds right now so we were troubleshooting with his endo about the best plan to make sure he is getting his life saving hydrocortisone. We have some ideas, but he wanted to hear what GI said about the malabsorption before making major changes.  We saw GI last Friday and made some med changes in hopes of seeing some improvement. Unfortunately, we didn't see as much change as we hoped. We are adding another medication and running some labs. We are still hoping we can get this under control before we have to switch meds to IV form. We are still not feeding at all through Alex's feeding tube which leaves him hooked up to his port 24-7. It isn't ideal to stay hooked up to an IV all day for a 13 year old boy, but we will do whatever we need to to keep him healthy.

Last weekend Alex and I went away for the weekend with his church youth group for his confirmation retreat. We had an incredible time. I love to watch him enjoy his time and watch his friendships continue to grow with his friends that accept him exactly where he is. I was also able to have some fellowship with the other chaperones. We came home exhausted, but with our spirits renewed. I love that he doesn't mind having me around and even wants me to participate. He came to find me so we could zipline together!

After returning home Sunday, I had to turn around and fly out Monday morning to Cincinnati for training for my new job. In 13 years, I have never left Alex. I had a hard time leaving Monday morning. There were lots of tears involved. Once I arrived in Cincinnati I had a great time. Alex has been a patient of Thrive RX for almost 6 years. I got to meet people I have talked to for many years and I was able to see the behind the scenes of how Alex's TPN is made and how his supplies are pulled and packed. I also made a new group of friends. The 10 people in my orientation class had a great time and we really made the most of the time we were not in class. The kids did great while I was gone and it was good for me to get away for a few days. I was proud of myself for going despite my fear.

Tomorrow is one of our favorite days of the year...Dance Marathon at TCU. Hoping that the kids have a good day and feel good enough to enjoy themselves and that Alex and I can use our story to touch these students who give so much.