No News is Good News

I figure by now you must know if I'm not blogging things are ok! We had a very nice Christmas! Mimi and PopPop were here and it was a quiet relaxed week. Alex is so funny about Christmas. I have never met another child like him. He doesn't rip through all his presents like most kids. It takes us HOURS to open gifts as he opens one thing and wants to play with it before he moves on. It is usually with lots of encouraging that he eventually moves on to something else. It really does make it enjoyable to see how much he loves and appreciates each gift!

Alex a few days before Christmas

Alex and his nurse, Theresa

Alex and Mimi

Alex and Hayley

Acting Silly on Christmas Eve

With Mimi on Christmas Eve

Looking through his Stocking

Opening Presents

We were happy to have Mimi and PopPop for a few days after Christmas. We made a quick trip to San Antonio, toured the Texas Motor Speedway and enjoyed each others company. Once they left it was back to school. Alex has been doing an incredible job for me over the last month. He really thrives when we are home for extended periods and that is reflected in his behavior and temperment.

My poor boy had a few hard days emotionally last week as he was once again missing his buddy, Samuel. It caught me completely off guard and made for a hard few days for me as well. We decided to write Samuel a note and send it to Heaven. Alex seems to be feeling better since then.

We always treasure our times surrounded by friends and we have been fortunate to see our playgroup twice in the last week. Alex was so excited to ring in the New Year (well a few hours early) with his best buddies. We enjoyed dinner and dessert. Not sure if we adults enjoyed it more or the kids as we let them sit at their own table! Then yesterday we finally had everyone healthy to have our playgroup Christmas party. I don't know that I will ever be able to express how important these friendships are to both me and Alex. Playgroup is like our rock and it really does keep us steady when the waters are rough.

Let's see what else....Monday we made one final trip to Six Flags as it was closing for a few months. Reflecting on how far Alex came in his bravery over the season was crazy. Rides he was petrified of a few months ago are now counted among favorites. We can't wait to see what he conquers next year. Multiple times Bruce and I have looked at each other and said that the money we spent on our season passes is some of the best money we spent all year. We more then got our money worth and had some awesome family time in the process.

Last night, I was happy to once again head to church for Wednesday Night Life. One of my good friends is doing a study for women and I decided I needed to do something for myself. I left church feeling so uplifted and encouraged. Alex loved his class and can't wait to go back. I am praying his little immune system and all of our interventions will allow him to stay healthy so we can enjoy this time of fellowship.

We are heading to Houston next Week for 4 appointments. It should be rather routine, but you never know.

We ask that you pray for safe travels and for my sweet boys heart as he struggles with feelings of "not being normal".  I pray that you, our family and friends have a year that is blessed with much health and happiness.

Ali



One Year....

One year ago today we walked into a nightmare that I will never forget. One year ago today, I watched my baby spike a fever, start hallucinating, having seizures, bleeding and winding up on a ventilator over the course of a few hours. It was the scariest day of my life, a day that I can still picture so vividly in my mind.

I can not believe it has been a year. In some ways it seems so much longer and in some ways it seems like just yesterday. This last year we have seen some major changes in our care for Alex and we have seen him blossom in so many ways. In my mind, December 19th will always be Alex's second birthday. So many angels were at work on this day a year ago to work and keep my sweet boy safe so he could be with us longer. I will forever be grateful to the staff at Cook Children's hospital who worked so incredibly fast to get Alex airlifted to Houston. Once we arrived n Houston, Esther, one of our "regular" nurses quickly recognized that Alex was not well. The residents on call, Dr. Nguyen and Dr. Doan were two who know us extremely well and made the immediate decision send him to the PICU. To Dr. Pacheco and Dr. Koenig who were in constant communication making sure everyone knew exactly what needed to be done and what Alex's history is. And finally to Dr. Thapar, the PICU attending who was by Alex's side for hours and acted quickly and aggressively to save Alex's life. I am blessed every day with the joy of being a mother to this amazing boy. What a gift I have been given!

Alex at the beach in Half Moon Bay

Alex and his best friend, Walker

What a difference a year makes!

I have been quiet over the last few weeks...After returning from Stanford, I came down with a sinus infection and asthma flare that left me without a voice for a week and still recovering 2 weeks later! I am FINALLY starting to feel better. After a rough few days, Alex and I got back into the swing of our regular schedule. We have been hard at work at school and therapy. We have been preparing for Christmas. We had a fun 2 week visit with Grandpa. We are looking forward to having Mimi and PopPop with us for Christmas. We have enjoyed having Daddy home from work for a few days. Alex continues to do well on his EPI-743 and SCIG. Overall, things are going well.

At this time of year, I am especially grateful for the incredible friends and family who walk this incredible journey with us. Those of you who share in our joys and carry us through our sorrows. We are so thankful for the blessing you are in our lives.

Ali



Amazing News!

13 weeks ago today, I posted this:

The rest of the roller coaster has been in regards to Alex, his less then stellar health these days, and the hope this medication brings. I cannot begin to explain to others the emotions that come with being the mother of a child with Mito. Not only is it a disease that could take my childs life at any moment, but it is also a disease that has no way to fight it. With cancer you are given odds and a plan of attack. With mito you have to sit back and watch your loved one fade away while you do nothing. It is a helpless feeling. Enter EPI-743...This medication may do nothing for Alex or it could change everything. It is so hard to not be hopeful and so scary to let our hopes rise and possibly have them dashed. As I have watched Alex struggle over the last 2 months, I have worried. He doesn't have his usual spunk, he is losing weight, he doesn't feel good. And so I hope, I hope for a fighting chance. A chance that starts tomorrow...

I sit here today unable to believe the difference we have seen! Alex is full of life sometimes so much so he drives me crazy. He is feeling good. he has put on weight. I came into this trial with hope, but our realistic expectations were that on a cellular level this would make a difference. We did not think we would see the visible changes we have seen. Alex had his repeat brain spects and the results are incredible! Alex's first spects showed "diminishement" or problems. The scans done yesterday show a 50% improvement. This makes Alex one of the best responders to the drug. We are amazed. These results validate the clinical changes we have seen and give us so much hope!

Dr. E thought he walked into the wrong exam room on Tuesday! He was so happy with the changes. He does feel like we need to satrt Alex on a medication to help his liver. Him and Dr. K will discuss doses and work on getting that going. We will need to come out here a few times a year to follow up with Dr. E unless the FDA changes there requirements, but we are allowed to stay on the medication!!!

In other news...We received some news from the genetic testing we had done in July. We did not get as much information as we had hoped. Dr. K does believe we have found the cause of Alex's seizures, but not much else.

Please pray for safe travels for Alex and I tomorrow.
Ali