With the passing of Thanksgiving we had a lot to be thankful for this year - particularly Tim's continued progress as he recovers from his surgery earlier this year. We had an appointment with the doctors at Children's this morning to get a sense of how he is progressing and get confirmation on how we have been feeling about how Tim has been doing over the last couple of months. We knew going in that Tim has looked and been acting better than ever so we had confidence that the diagnostics today would prove that. First thing was a blood draw that Tim did not enjoy at all, then a long echo study, a pacer check and finally a chance to meet with the doctors about how everything was looking. On the whole Tim is definitely improving - he's gaining weight, growing taller, his heart function has improved although there is still some regurgitation in two of the valves that will continue to be monitored.
The big improvements that we are happiest about came in terms of Tim's medications and his follow-up schedule with the doctors. The doctors have agreed to reduced Tim's dose of night time diuretics in the hopes that we can see him be able to sleep through the night and avoid any accidents or the need to use diapers, which with a little one coming in just 2 months will be a big help to mom since she is usually the one to wake up to take care of Tim if he wets his bed. The doctors also agreed to switch Tim to more pills than liquid suspensions of his meds which will mean faster/easier/cheaper refils every month. The doctors from the transplant/failure team Tim has been seeing have also agreed to let us resume seeing Dr. Vitulo for every other checkup since she has office hours at Central DuPage Hospital which will mean a much shorter trip for some checkups.
Otherwise, both boys are looking forward to Christmas and helping decorate the house over the rest of the weekend. They were also selected by the Lombard Police Department to participate in their Shop With a Cop program next week where they will get a combined $200 to purchase gifts for each other and mom and dad along with participating in a parade in a police car to the local Target with other selected children and a post shopping wrapping party. We feel blessed that our local community has been so supportive during this most difficult year for Tim and our family.
We would also like to remind everyone following along with us that if they are doing any shopping on Amazon.com to stop by LittleTimmyGrobart.com first and begin their shopping there through our partner links so a portion of whatever you are spending will get deposited in Tim’s fund, or if you are looking for alternative thoughts for gifts keep the American Heart Association or the Children’s Heart Foundation in mind for a charitable contribution so additional research can be done to help prevent or better diagnose congenital heart defects. Our family would finally like to wish everyone a happy, healthy and stress free holiday season and New Year if we don’t have an opportunity to post another update before then.