The longest Week

This has been one of he hardest weeks of my life. For years I have learned how to balance the care that Alex requires. I can manage nausea, pain, and a slew of other problems. I know when to push him and when to step back. But to watch him struggle with the very real, very intense fear of dying and the anger that his best friend is dead has been heartbreaking. The emotional strain is absolutely exhausting. So please bare with me as I am not as available or takative as usual.
I do need to update you on our appts though. We had two appts on Tuesday. We saw Dr. Koenig and Dr. Navarro (GI). Dr. Koenig's appt was mostly a "check-up" following our admission. We changed out last IV med over to Jtube (his seizure med) and increased his dose. We also discussed Alex's frequent headaches and the possible need to treat them in the future.

After Dr. Koenig, we headed to Dr. Navarro. We officially stopped TPN/lipids. Woohoo!!! we have also come up with a plan to see if Alex is able to reduce or hopefully stop IV fluid replacement. We are all happy with his progress since being hospitalized, but we have not been able to come up with any way to improve our baseline. We continue to discuss possible ideas.

So overall, the appts were good. We are in the process of locating a psychologist who is familiar with chronic illness. Please, please pray for Alex as he is really struggling. Please pray for me to be patient and have the right answers.

Ali

A long, hard emotional day

I really don't have the energy tonight to give a full update, but I did want to let everyone know that we are in Houston (not in the hospital) and doing fine. We had two appts today. Alex has started to express some pretty raw emotions regarding Samuel's death. It has been heartbreaking and exhausting to see the pain he has been holding in. I promise a full update tomorrow.

Ali

Energy for Life

This is a post I have put off writing for some time. You, our friends and family, have completely humbled me with your incredible generosity to our family over the last few months. Alex gave us the scare of our lives in December when he was in the PICU and fighting for his life. Since that time we have watched two precious little children join our buddy Samuel in heaven and we have another friend that is fighting this very minute to win his battle against Mitochondrial disease. And yet this devestating illness has no treatment and no cure. Every day I watch Alex go through more then any person should endure. I watch him struggle through shots, 30 doses of medication, carrying a backpack that weighs a third of his weight, long to eat and be able to run and play with his friends. I watch my son smile regardless of what challenges are presented to him and yet I am left feeling completely helpless because there is nothing I can do to help him. EXCEPT try and raise money to fund research that may someday find a treatment or a cure that can save Alex's life.

And so this coming weekend we will walk in the Energy for Life Walkathon in Houston. We will walk to honor Alex and his many friends who struggle with this disease. We will walk in memory of our dear Samuel who we still miss daily. And we will walk for HOPE. For the hope that someday there will be a cure. If any of you would like to join us in Houston to walk, be a virtual walker or sponser us you can join Team Beckwith at http://www.energyforlifewalk.org/c.buITJdNTKmL8G/b.6333951/k.8E69/Join_a_Team/siteapps/teampage/ShowPage.aspx?c=buITJdNTKmL8G&b=6333951&sid=bhKSK5NCLfLTJYOFIuE.

We have made Awesome Alex shirts and anyone who donates $10 will receive a t-shirt as thanks for fighting this battle with us.

We are so thankful for the love you have surrounded us with.

Ali