Saturday, December 29, 2012
Sorry we have not given any update in a while, but a lot has changed since our last post. We were released from the hospital on Friday December 21 with our IV poles, our NG tubes, our load of medicines and vitamins, and we headed home. It is surprising how well the twins have adapted to everything. It is like we have always had an IV pole in our kitchen or in our bedroom. It is amazing how fast it became normal. Christmas was wonderful and Santa was good to everyone. The girls seemed to be in awe with what was going on around them. The dietician and home nurse visits have been reassuring and it's wonderful to see the puffing up. We have achieved double chins, big cheeks and a bum line. Oh, and thighs as well!
The rest of the family seems to be quite content with the new additions finally living under the same roof. Johanne and I are trying to get back to our running routine, which will come. Johanne declares that 2013 is the marathon year. Her training leading to it officially starts at the end of January.
The girls will have their first ''public outing'' on January 1st for the Resolution Run here in Kingston. We will bring our IV pole and our pumps as it will take place over lunch hour: we need to take a dive at some point and leave the comfort of home.
The internet being full of useful info, we were lucky to find a support group for Alagille kids and their families. It feels great to know you are not alone out there and that there are others who fully understand what you are going through. As mentioned before, we have been surrounded by wonderful people through this all so far: a faithful friend who kept bringing coffee to Michael in the morning at the hospital and keep him company, and also did so much more for us, Michael's sister who sent us ready made meals to fill our freezer, my friend MJ who donated one week of her time to come over and help us out, my friend Véro in Ottawa who managed, via her babywearing group, to do something amazing for us (you can read about it here and here), the MFRC here in Kingston who is ready to help out, Michael's coworkers who gathered some money to make things easier for us, all the people who have sent clothing our way, or gifts for the twins or the older siblings, and so many others who have offered kind words and support to us. We also owe a lot to the wonderful docs and nurses who work on KIDD 10 at KGH: they are dedicated and loving people, who really care.
It would be easy to fall into the trap of focusing on those who do not understand what we are doing. We are strong, we are untouchable as a family. If you try to break a single pencil, you most likely will succeed. However, tie together 11 pencils and try to break them: you will definitely have a harder time.