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