Wednesday, February 27, 2013

Alagille, on a Day to Day Basis

I will be visiting my oldest daughter's class tomorrow to introduce the twins.  The grade 7 class has been welcoming a mommy and her baby on a regular basis for some time now.  The program is called ''Roots of Empathy''.  The little boy they have been observing was lucky at the lottery of life, being born in a rich country, healthy, and loved.  This is not the case for everyone, as we all know.  I am proud to bring my daughters to school to show them around.  It will also be an amazing eye opening opportunity for the students to see with their own eyes how sickness can affect the life of children, and above all, that not everyone gets the same start in life.

My intention with the students is to talk about how the girls came along in our lives and tell them a little bit about where they are from.  But I have a feeling most of the time will be spent on the girls' condition, Alagille syndrome.  What is it and how does it affect life on a day to day basis.

This is how I got the idea of writing this post.  Michael and I have talked about Alagille on numerous occasions, but how did it affect our life on a day to day basis?  Many people wonder how we do it with so many children (by the way, I still refuse to think that we have a large family), including 2 heavily special needs wonders.  The house is not chaotic, everyone is clean and dressed, no one hides in corners to cry, kids still go to school, Michael and I are keeping our running up.  We are organized and I guess we have an attitude that allows us to accept it easily.  When we adopted Toan 2 years ago, who was believed to have cerebral palsy, we thought that worse comes to worse we would have to move in a bungalow to accomodate a wheelchair.  And that was the worst outcome possible in our opinion.  Would that have been so bad?  Not at all.  We still would have loved him just as much.  Toan was lucky and suffers from nothing else but from a 2 year old attitude...!

Before adopting the twins, we read about the possible conditions they might suffer from, to a point of feeling dizzy. Don't get me wrong here, we never ever considered not taking them: from the moment we heard about them, they were part of our family.  Then we resigned ourselves with the ''we'll cross the bridge when we get there''.  If we have no control over life, let's just go with the flow.  Hmmm...  Again, we would do the same thing all over again, because we were meant to be their parents and they were meant to be our daughters.  Plus, they are so adorable!!!

So we flew to Vietnam to meet them: our lives changed forever the minute we saw them.  Yes, it was WAY worse than we thought, let's not kid ourselves here.  Did we panic?  Yepper.  We let our guards down and allowed ourselves to panic live on Skype with our trusted friends D&M and D&B.  Did we think we were nuts?  Absolutely.  Only stupid people do that.  But again, we are proud to be this kind of stupid.  With the aid of angels from Halifax, Edmonton, Newfoundland, Ottawa, Quebec city, Montreal, Kingston, we shook ourselves up and moved on.

Alagille is the third triplet with Binh and Phuoc.  Twins are a fair amount of work, twins with special needs are a whole lot more work.  Alagille means on average 5 to 6 medical appointments per month: GI, pediatrician, hepathologist, ophthalmologist, endocrinologist, cardiologist, surgeon.  We also get weekly home visits from a nurse and a dietician.  We needed to find a specialized pharmacy who can prepare all of their meds.  Talking about meds, I prepare between 15 and 20 serynges each morning, depending on the day, and probably another 10 later on in the day.  Alagille also came with feeding tubes that need to be changed on a weekly basis, if we are lucky.  Sometimes, the girls pull their tubes out and you have to reinsert when it's the least convenient.  Alagille also came with feeding pumps.  This required from us to adapt very quickly to our new routine because the girls' survival depends on those machines to feed.  They are tube fed 3 meals per day and overnight for 10 hours.  We installed a camera above their bed to monitor them and make sure they don't get tangled in their lines, or pull their tube only halfway (which would make them drown), choke or simply beat each other with bottles..!

We were naive a bit before the adoption, thinking once they ate well they would get better.  Alagille brought Peptamen in the house, which they consume in grand quantity.  Peptamen contains MCT oil, the only fat absorbed by their system.  We are lucky to get funding, because with what they consume, we would be bankrupt by now.  And for those who think the girls cost too much to the Canadian gvt, you might as well leave this page and never come back.  Because yes, I have heard that comment from people in regards to internationally adopted special needs children.

But overall, Alagille has brought with it a new appreciation for the real people around us who chose to help.  It has strengthened our family and our convictions in regards to adoption, in particular the adoption of special needs.  And Alagille has given us 2 wonderful little girls who are loved beyond words. 

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