Alex and Maddy

Alex and Maddy

Sunday, November 20, 2011

Long Overdue!

Sorry for the lack of updates!

Alex was discharged last Sunday. We rushed home and tried to get things put together for Grandpa's arrival on Tuesday. I was able (with the help of Theresa, Alex's nurse) t get the laundry done, the mail sorted, bills paid, house cleaned, supplies ordered and unpacked on Monday. Needless to say I fell into bed early Monday night! We picked Dad up on Tuesday morning and have had a pretty quiet week. Alex is getting back to himself. We really saw him struggle after our Wish trip. We are a few weeks out now and he got blood after being anemic for 2 months and he is getting back to how he was before the trip.  The other thing that has been great is that Alex has gained over 2 kg (or 8 lbs) since restarting his TPN (IV nutrition) in September. We know that TPN is NOT a long term solution. We know as well as anyone the risks that are involved. However, we are SO happy that when needed it can make such a difference.

We are reaching the end of the clinical trial for the EPI-743. We are done with the trial right after Thanksgiving. Luckily, if they determine that we have seen improvements he can stay on the medication. I have no doubt that they will see a huge difference in him!

I am also thrilled with how he is doing since starting the SCIG (immune replacement). While Alex still got sick, this illness did not hit him the way a virus typically does. He recovered quickly and held his own throughout it! I pray that we continue to see his little body fight with the help of all these improved treatments.

Dad is here visiting through Thanksgiving. We all fly out on the same day. Dad will fly home and Alex and I will take off for Stanford. We are only there a couple days this time as we only have a clinic appt and a repeat brain spect.

We are so thankful for you, our family and friends. I know I have not been calling, emailing, on fb as much. Thank you for still checking in on us. I am busy with Alex's schooling, medical needs, taking care of the house and trying to find a few minutes for myself!
Ali

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