Alex and Maddy

Alex and Maddy

Friday, February 11, 2011

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.



  1. Lots of hugs for you guys. Hang in there!

  2. Ali, I'm so sorry that all of you are going through this.

    Eithene is much younger than Alex, so her emotions are less concrete in some ways and easier to redirect... but we deal with similar emotions that come and go in cycles. Fear and anger about dying have been big themes. It breaks my heart and makes me feel a thousand times more helpless than I ever do over her most life-threatening medical issues.

    I haven't found the magic answer, and Eithene isn't grieving the same way as Alex is, so I'm not sure what has worked for us would help. We have prayed a lot about her ability to cope with the horrible realities of the disease. We bought some carefully chosen children's books about heaven that are beautiful, happy, inviting, and based on scripture. She works with a psychologist every week. I talk to her over and over again about her fears (when they are bothering her), and reinforce that her feelings are normal and ok, while directing her to the very real wonderful things that we believe about dying and heaven.

    Again, not sure if any of this would help Alex. What he is going through is more complex. I will pray that you find a psychologist who is a perfect fit for him.

  3. This just breaks my heart! I will be praying for you guys.

  4. Ali,
    I am here if you need me. Praying for you.