Saturday, December 13, 2008

All is Well - Busy Week Ahead

Elias continues to do well, although keeping him that way has been a bit of a challenge. Daddy has come down with a vicious cold/flu for the last three days, but has unfortunately still had the duty of caring for Elias during the day. Mommy can not miss any work right now because of the season, so we have had absolutely no alternative. I have been masked and gloved with any contact with Elias or anything having to do with him, keeping my distance at all times and only doing what is essential in terms of contact. Thank God for video monitors. I feel horrible leaving Elias to entertain himself while he is awake, but it is for his benefit. Catching what I have could be deadly for him. It is just a chance I do not want to take. It is also slowing the healing process and causing it to drag on longer than it probably should if I was able to just sleep it out. I can not take medicine during the day for fear of drowsiness and jitters so I only medicate at night when either Katharine or the nurse are here. Elias is just starting to figure out who the crazy man with the mask is. The first day and a half he had this very guarded look on his face. I can not say that I blame him though. Today was the first diaper change I could get him to smile as we did our traditional TIGGER song bounce on the trek to the changing table. I'll be glad when I am better and can handle him without all the extra precautions and play with him a little more. But as we said it is for his benefit and I am doing what is best for him.

This week will be slightly busy for us. We visit the hematologist for the first time. The hematologist is the specialist that will be managing the Fanconi Anemia. They will do blood work on Elias to get all his blood and platelet counts. They monitor these counts to give a glimpse as to how well he is maintaining levels for each. These will help us to determine when Elias is approaching bone marrow failure. We will also discuss when the appropriate time for his first bone marrow biopsy should occur, likely in the very near future. We also have our first follow-up with Genetics on Thursday. We hope that the test results  to isolate which of the thirteen variations of FA Elias has will be back. They should be as these were sent just prior to leaving the NICU. This will open doors to managing his FA more precisely as well as give our family members the ability to have a rapid test done to see if they also are carriers for the gene, like Katharine and myself. As we told everyone before, it will be in our best interest to get these test done to isolate who is at risk and who is not. We will contact the family members that should get tested when we have more information, just wanted to remind you all. Finally this week, we begin our in home physical and occupational therapy on Friday.

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