Alex and Maddy

Alex and Maddy

Sunday, July 8, 2018

Quick Hospital Stay

After returning from Washington late Thursday night, I scrambled all day Friday to try and get our lives back in order. I got things mostly put back done, laundry done, work done, medical supplies put away, etc.

Saturday and Sunday I allowed myself the grace to be lazy and try and catch up on some much needed relaxation and sleep! All was going according to schedule until Alex started to feel bad! Sunday morning just as we were leaving for church, Alex mentioned he didn't feel great and asked for an extra dose of Hydrocortisone. That is not uncommon so I didn't think anything of it. Around 2:00 he asked for extra hydrocortisone again. At 6:00 he told me he was pretty sure he had a fever. Sure enough his temp was 102.2 so we headed to the hospital. Alex always causes a sepsis alert to be called when we arrive at the ER which brings a slew of medical people into our room. He stabilized pretty quickly and we were able to get up to a room on our favorite floor. Unfortunately the flurry of activity didn't slow down until 4 Am. (So much for my much needed sleep)!

By Monday Alex's temperature was gone. I ran home to get him something we had forgotten in our rush to get to the hospital the night before. When I got back, Alex was hunched over in pain with tears running down his face. Alex hides his pain ALWAYS so I knew he was really hurting. He was sure based on pain level and location that it was his pancreas. We scrambled to get him a dose of pain meds and he slept for a few hours. When he woke up his pain level was MUCH better.

Tuesday morning we decided with our doctors that if labs looked okay we could go home because he had been fever free for over 24 hours and his blood cultures had all been negative for 36+ hours. When the doctor came in a few hours later with a devastated look on her face, I was not happy. Luckily, blood cultures were still negative. However, Alex's blood counts had dropped almost 3 points in 2 days, his pancreas labs had bumped a little and his inflammation marker was up quite a bit. After more discussion, I reassured her that this used to be Alex's pattern. Those of you who have followed us for a long time will remember that we used to go into the hospital every 4-6 weeks with a high fever. We often wouldn't find a cause and frequently needed blood transfusions. We agreed that we would test his ostomy output and if there was no blood we could still go home as long as I promised to bring him back at the slightest sign something was off. So we made it home late Tuesday night.
Always the diva

Not bad for being in the hospital

Our favorite visitor

Alex has seemed fine since then. His labs Thursday looked a tad better. I am hoping that this is not the start of the old pattern. I am working with his doctors on what we need to tweak to try and keep him out of the hospital as much as possible.

We had a quiet day on the 4th as we tried once again to settle into home and relax a bit. Thursday, Alex had a unique opportunity to film a promotional video for Children's Miracle Network and a corporate sponsor. He continues to amaze with his poise and confidence in front of the camera and important people.

Always Dancing

At each setback with Alex, I am reminded of the incredible village we have around us. Not only the doctors and nurses and hospital "friends" who are so amazing in caring for Alex physically and all of us emotionally, but also the friends who are always willing to step up and help make sure Maddy is loved on and having fun while I am with Alex. It means so much more then I could ever say to know that both of my children are cared for and loved regardless of where I need to be.

Maddy thinks Mrs. Mitchell is her BFF

This week is a busy one with appointments for both kids and another dance camp for Maddy Moo. Please keep us in your prayers as we try and stay healthy!

Saturday, June 30, 2018

Washington, D.C.

I am not even sure where to begin...This week was amazing in so many ways. I am going to go chronologically and hope I can do justice to the awesome experiences. I have included lots of pictures (excuse the quality. I was carrying Maddy A LOT!)

We flew out early Monday morning. Alex had asked specifically to see the National Cathedral. After a quick stop at the hotel we headed out to the cathedral.
Erin, Alex and Maddy getting ready to leave

The front of the Cathedral

Alex and Bobby (Senior VP of Cook Children's)

Alex asked to pray in the Cathedral. It was the first of many times he brought me to tears this week.

The stained glass was GORGEOUS!

My pictures cannot do justice to the beauty.
Tuesday Morning we started with a breakfast for all of the families attending Family Advocacy Day and Alex had to give a quick interview before we headed to the  Capitol for a private tour. Tuesday afternoon, Alex and I had our first two meetings on the hill with Congressmen Joe Barton and Senator Orrin Hatch. 

The House Side of the Capitol

The Capitol

The Center of all of Washington. It is believed to be good luck to step on it.

Senate Appropriations Room

Looking up at the Ceiling of the Rotunda of the Capitol

On the floor of the Old Senate
Alex and Tucker (Our tour guide and one of Kay Granger's staff members)

Heading to the Hill

Congressmen Joe Barton
Alex at Rep. Barton's desk while he is on the floor of the house!

The view from the office!
Tuesday night we took a ride to visit the memorials. It was so beautiful and we had such a great time!
As we arrived at the Lincoln Memorial, a parade was finishing.

The monument from the top of the Lincoln Memorial

Korean War memorial (Which Alex REALLY wanted to see)

The view of the Lincoln Memorial across the Reflecting Pool

The Monument from the WWII Memorial

The WWII Memorial
Wednesday we spent the whole day on the hill. We met with Representative Kay Granger, Senator Ron Wyden, and Senator Chuck Grasseley.

Alex with Bobby and Mr. Merrill (CEO/President of Cook Children's)

Alex with Kay Granger

Congresswoman Granger was so genuine and really believes in having adequate healthcare for children with medical needs. 

Rep. Granger presented Alex with the flag that was flown over the US Capitol on his birthday!
Thursday morning we went on a tour of the White House and went to the National Archives to see the Declaration of Independence, Constitution and Bill of Rights.
Heading into the White House

Maddy and Mr. Merrill outside the White House

I can tell you what we did, but I cannot put into words what it is like as a Mom to watch your son speak articulately and knowledgeably to legislators in hopes of making a difference for himself and other children like him. To say I am proud is an understatement. I received so many compliments on his maturity and intelligence. He impressed everyone we met. Our meetings on the hill were with Bobby, Mr. Merrill, the President of Children's Hospital Association and one of his right hand men. All of these important people and yet Alex made the biggest impact on the members we met with. This trip was truly a once in a lifetime experience and we are so grateful for this unique opportunity.

Thank you to everyone who prayed for Alex and his health on this trip. He did better then we ever could have hoped.


PS- Bobby took a lot more pictures then me (and hopefully better). We also had professional photographers with us during our meetings. More to come in the next few weeks. 

Sunday, June 24, 2018

Exciting Week Ahead!

Let me start by saying, THANK YOU to everyone for your kind messages about our video. A lot of hard work went into telling our story while keeping our message of positivity and hope in there. We are so grateful to the hospital staff and videographer for their commitment to this project and to being true to who we are. As we embark on our journey this week, we ask for everyone's' prayers and support. We pray that the legislators we meet with hear our story with open ears and it impacts their votes on healthcare.
Here is the link for anyone who is not on facebook:
Alex's Story

I will be posting pictures on facebook and Instagram throughout the week and will update here next weekend.

In the meantime, we have been staying busy! On June 8th and 9th, we celebrated Alex's birthday with friends and had so much fun!

Main Event

The last year of friendship with the Glenn's has been so amazing!

The week of June 10th, Maddy did a fun camp at Texas Ballet Theater. She has loved her time dancing and especially loved this fairytale camp. 

The past week has mainly been quiet as we rest up and prepare for our trip.  Maddy did yet another ballet camp! (She can't get enough)! Alex got to help/attend a tour of the hospital with some of his favorite people from Extra Life. Alex had an appointment with nephrology. His symptoms and labs are improved so we will continue the two new kidney medications for now. We will repeat some testing when we get back to see if any of the medications need to be adjusted. Alex also had an endoscopy and tube change with anesthesia on Wednesday. We changed amddy's tube for the first time here on Friday and she did great. What a difference that tube has made this year. Maddy gained 11 pounds in the last year since getting her feeding tube. She has grown, made huge strides in therapy and thrived in every way. 

Thank you for your prayers over the next week!