One of our favorite Weeks

Today marks the start of a really special weekend for us. This weekend is TCU Dance Marathon. TCU students dance for 12 hours tomorrow to raise money for Cook Children's Hospital. Last year we were asked to speak at DM and not only did we meet an incredible group of students, it was also the launching pad to many more speaking opportunities where Alex and I can share our story to raise money for a hospital we love. I am amazed by everyone who takes time and energy to help families like ours by fundraising, but I am really amazed by the selflessness of college students who take time away from their "fun" to give back. These kids pour so much of their hearts and souls into this weekend. I am honored to share our story and show the importance of what they do. Alex and Maddy love these students and this day. We were lucky enough to spend a few hours with them this evening as they make there final preparations for tomorrow. Maddy just wanted to run and play and dance with "her girls". Alex wanted to talk video games with his favorite guy. Both left smiling and excited for the fun tomorrow will hold.

This week was a pretty typical week. Maddy has had a rough few weeks in therapy. Her therapists are shaking their heads trying to find a way to strengthen those little muscles when she fatigues so quickly. It's a good thing she loves her Suzan and Nicole and that they love her because sessions are not always easy!

Alex is still struggling to get his GI system to wake up and get back to his normal. He normally runs feeds at 50 cc/hr. We are stuck at 40 cc of half strength formula and have had no luck advancing past that. We ran labs this week and are hoping they may give us some clues as to how to help him further. He is still more tired then usual, but seems to be improving in that area. 

This past Sunday was Scout Sunday. Our church is also the charter organization for Alex's scout troop so he was happy to serve during worship. 

I have had a few people ask about our nursing situation. We used to have one nurse who worked 3 days a week and one who worked 1 day a week. The nurse who worked 3 days is the one who is leaving us. Erin (who was working 1 day) has decided to come o as our 3 day nurse. We are so excited to have her full time and not have to adjust to someone new. We will continue to search for someone to work 1-2 other days, but at least I have someone we know and love to care for Alex a few days!

This week was haircut week with both Zoey and Maddy getting haircuts. Alex loves Zoey to have a "show cut" which is shaved through her back and then long on her legs and stomach. He is always happy when she comes back from the groomer. 

We are excited to share all about tomorrow next week!

Ali

Where do the weeks go?

I am not sure how my weeks fly by so quickly except that we are SO busy!

This past week was a week of trying to get back to normal. Alex left the house on Saturday for the first time since getting sick for anything other then a doctor's appt. We are lucky to be part of a group called HopeKids that offers fun activities for families of chronically ill children. Each month they offer a movie and this month was Lego Batman. Alex had really been wanting to see that movie so we decided to give it a go. He loved the movie and it was good for all of us to get out and enjoy ourselves, but he was wiped out by the time we got home. He is still napping a good 4-5 hours every afternoon!
Sunday was a quiet day except for church.
Monday Alex continued to relax while Maddy and I went to Taste Buds for our cooking class and therapy. This week we made Strawberry biscuits and they were delicious!

Tuesday was supposed to be a quiet day at home, but we got a call early in the morning from someone very important to us, asking a favor. Sonny Burgess is one of the kindest, most genuine men you could ever meet. He also happens to be a talented musician. After years of volunteering at Cook Children's, he is now an employee. In December, when he learned that Alex wanted to play violin, he graciously offered to be his instructor. Since Christmas, Sonny and Alex have met weekly for Alex's violin lessons. Sonny called Tuesday morning to let us know that he had won an award and they wanted to video him working with a patient. He asked if there was any way we could come to the hospital for a lesson that morning. After all that Sonny has given to us it was a no-brainer for us to head to the hospital. If you haven't seen the video on my Facebook wall, make sure to check it out. You will see what an amazing man Sonny is and how lucky we are to call him a friend! When we got to the hospital we realized that the video was being filmed by the same videographer that works with Zoey's trainer and had done an interview with us last April. Talk about a small world!

Wednesday it was back to the hospital for an appointment for both kids with our Metabolic Geneticist. We see this doctor every six months and it is always a LONG appointment. Trying to update a doctor on everything that has gone on with both kiddos for 6 months is not easy. After our appointment we were back to the recording studio to re-film an interview on our experiences at Cook's and how important Family Centered Care is. While Alex worked his magic in the studio, Maddy enjoyed some time playing and painting.

Yesterday Alex enjoyed his first "normal" activity in over 2 weeks as he went to his golf lesson. Maddy and I had an appointment with our beloved pediatrician about some concerns from her therapists and then a therapy appointment.

Today Maddy and I were back to Homeschool Co-op, but Alex was too tired to make it. It was so good to see friends and catch up.

Medically, Alex is definitely doing better. He is still struggling with fatigue and we are still working  to get his feeds running at our normal strength and rate after the pancreatitis. We are currently about 3/4 of the way up on rate and are at 1/2 the strength. We are praying he continues to improve each day.

We are so grateful for our "village". The love of our friends, families, doctors, nurses, therapists and child life staff keep us going during the rough times and help us enjoy all the good times.

Ali

Update on Alex

This has been a long, trying week. When we came home on Saturday we knew Alex still had some recovering to do. As has happened in the past, the flu is hard on Alex's body. His last set of labs in the hospital showed that his hemoglobin and platelets were dropping. His labs also showed he had yet another episode of acute pancreatitis. Although he wasn't well, we felt confident that we could do everything that needed to be done at home. Since Alex can never tolerate feeds when he has pancreatitis, our orders were to follow-up first thing Monday morning to get IV fluids to keep his blood sugar up and keep him hydrated during the day since his TPN only runs at night. We were also supposed to repeat labs to make sure they weren't looking worse. Unfortunately, both our GI and his nurse were out on Monday. It was a long hard day trying to get people who don't know us to understand what was necessary to keep Alex well. We also had a nurse from our agency to come out to assess Alex (which is protocol after a hospitalization) and she was concerned about his lungs. Monday night when Alex went to brush his teeth for the first time since his procedure he had a large amount of bleeding. Our labs didn't come back.

On Tuesday, we saw our beloved Pediatrician. He is always so helpful because he has known Alex since the day he was born. He knows all the history and is such a good judge of what is concerning and what we can let go. Without the labs, we couldn't make a whole lot of treatment plans, but we decided we would chat after the labs came back to determine next steps. We also got our fluid situation sorted out and breathing treatments ordered. By Tuesday night our GI office and Home Health Company had both called the lab multiple times with no results.

Wednesday was just more waiting and watching as we couldn't make any decisions without the knowledge the labs would provide.

Thursday we repeated the labs in the morning and had an appt with our GI in the afternoon.  We were all happy that his labs are improving. We made the decision to attempt half strength feeds at an extremely low rate (10 cc/hr) and progress as Alex can tolerate. His biopsies from his endoscopy didn't provide any information about the pain he has been experiencing for almost a month now. At this point we are left wondering if the pancreatitis was brewing and the flu/strep sent him over the edge or if the pain is from something else.

Alex is improving, but is still really pale and tired. He is still in pain, but he is toughing it out. Please say some prayers for him as we continue to try and increase feeds. Please also pray for Maddy who is running a low grade temp and is coughing and sneezing. She has been on Tamiflu so we are hopeful she is just fighting a cold.

Thanks for loving our family during the good and the bad times.
Ali

Home, Sweet Home!

Well this week didn't exactly go as planned!

On Tuesday, both kids had GI appointments. For Maddy, the discussion centered around her slow growth and nutrition. For Alex, we discussed the increased pain he has been experiencing for the past 2.5 weeks. Dr. O didn't want to make any changes with Alex until seeing if he could find a cause for the pain.

On Wednesday, We had to be at the hospital at 5:30 as Alex was scheduled for an endoscopy and some dental work. Dr. O didn't see anything visually. He scoped both his upper GI and also took a look around his Jejunum through his J-tube Stoma. He took biopsies and we don't have the results of those yet. The dentist did a deep cleaning and had planned on removing 3 baby teeth. When she got in there she found 9 baby teeth that needed to come out! We had an excellent anesthesiologist and Alex did pretty well. We were home around lunchtime and he just took it easy as he wasn't feeling great.

He woke me up at 4:30 Thursday morning saying he didn't feel well. We took his temperature which was 103.5. Bruce was at a sales meeting in Austin so for the second day in a  row I quickly packed up both kids and headed to the hospital. We arrived in the ER and were rushed into a room. Alex is always at a high risk for rapidly declining because of his mitochondrial disease and Adrenal insufficiency. Our ER does an excellent job of quickly responding to keep him stable. The initial assessment focused on his central line.  He was complaining of a really bad sore throat and had started to cough a little bit so i asked about testing for Flu and Strep. We were all shocked when he came back positive for both Flu A and Strep.  He was admitted. He feels pretty cruddy, but stayed pretty stable. I convinced the doctor to let us come home today. Some of his labs were trending in the wrong direction so we are keeping a close eye on him and will need to follow-up with several people this week. I am just happy to be home!

We are so grateful to our awesome neighbors who took care of the dogs Thursday morning when I had to rush out and one of Alex's nurses who came and picked up Maddy from the hospital and kept her the majority of the day so I could focus on Alex. Maddy's hematologist called in Tamiflu for her and we are hoping she doesn't come down with the Flu as well.

Thanks for everyone who offered to help.
Ali