Sunday, June 16, 2013

Overdue Update

Sorry for the big gap in writing, but it has been a busy last couple of months.  I'd like to say that the g-tube has been easy to deal with but we have been battling with healing the wound sites ever since the tubes have been in.  It seems we get the situation under control and out of the blue we slide right back to when they were inserted.  Binh and Phuoc keep throwing the ball at each other.  When one's site is good, the other's is not and vice versa.  I think we have tried just about every type of bandage, wound dressing or homemade remedy you can think of.  But on a positive note, all of the sinus problems we were having with the nasogastric tubes have cleared up and their weight gain has been spectacular.  From 9 lb back in November, the girls now weigh in at almost 21 lb.  Only recently have we slipped a bit due to unexplained vomiting especially at night with Binh.  Phuoc's eyes should be fixed before the end of the summer to correct her strabismus.  We are hoping it does not go like everything else, however, we have to plan for the worst, i.e. maybe an extended hospital stay.

Other than that, we had some good news - bad news, depending on how you want to take it, at our last meeting at Sick Kids in Toronto.  The girls will most likely end up requiring a liver transplant.  Their livers are still *good*, with numbers very high but stable.  The end goal is to keep them in this stable situation for as long as possible, allowing them time to grow so they are better able to deal with the stress of a transplant, most likely 2 to 3 years.  It has also been explained to us that there is no advantage to be put on the list until they truly require the transplant.  The other piece of news that came out is that it is very unlikely they will benefit from a donor at the same time.  So we will need to go through this twice.  

They have both hit some significant milestones.  We celebrated their 2nd birthday on May 14, they have mastered standing, and Binh particularly likes to cruise around the house holding on to furniture.  She should be ready to walk anytime now.

With this all going on, the rest of the family somehow keeps working quite well.  It's funny how this gang has adapted to this new normal.  An other important milestone has been hit as Johanne completed her first marathon in May in Ottawa.  The family is quite proud of this important accomplishment.  Michael has been sidelined most of the winter with lower back issues and had a brief stay in the hospital to discover that he has stomach ulcers.  We are almost at the end of another school year and the kids are eagerly looking forward to their summer vacation.  

Another major change in our life is the arrival of AC in the house, compliments of the fabulous people at 21 Degrees here in Kingston.  Rodger Compton from 21 Degrees arranged for us to get the whole system and installation for free.  Johanne called a few companies around to get some quotes earlier in the spring.  Rodger came by the house and was very moved by the fact we needed to get AC for medical reasons for the twins.  Staying cool helps them be less itchy.  The itchiness is caused by their liver condition.  Rodger brought this up to his boss and the company felt it would be a good idea to make a donation.  The team was extremely professional and above all so friendly with the children.  We feel very fortunate to be surrounded by caring people.  You can read about it here .

This summer will be quiet with more visits to Toronto, no extra-curricular activities, some sleeping in (we can only hope…!), more running, maybe some swimming if the kids manage to convince us to get a pool in the backyard, some gatherings outside after supper with friends as the kids play until dark, some camping trips for kiddos and daddy while mommy who hates camping stays home and chills out.  Let's hope for lovely weather! 

Girls having a picnic

Post-marathon pic with my 9 wonders
The Girls' new ride

Immortalized, on my leg...