Wednesday, January 30, 2013

A Dedication to Great Fighters

When I was younger, selfish and immature - and please, don't think I am being hard on myself as I really think at some point I was all of that (I BTW much prefer the person I see in the mirror now than the one I was seeing then) - so I was saying, I remember making a very shallow comment to my then husband-to-be in regards to cancer treatments: I told him that I would never seek treatment, that I would prefer dying with dignity, with my hair on my head.  Then he said something about our children - if we were to have any someday - and I think I sort of made a face meaning ''tough luck'' or something equally lacking of any substance.  Not one of my most glorifying moments, may I say.

Years went on, children arrived one by one.  And maturity set in.  I was preggo with number 4 and we were in Montreal.  Michael was working on finishing the basement while on leave after an Afghanistan tour.  I was pregnant up to my ears, barely able to move and we were listening to the radio.  There was a Shave for the Cure event at one children hospital in Montreal.  Then the light came on as if I got struck by lightning: I decided that I would do that when I ''grew up''.  Six years have gone by without doing anything.  My father-in-law I love and respect so much fought cancer 2 years ago but his treatments allowed him to keep his hair.  He won a very honourable fight against ''the bad guy''.

2012 and the beginning of 2013 have been defining so far: sickness touching people I love and respect around me and myself being able to thank Life everyday for being lucky enough to be healthy.  My daughters are fighting a daily battle against Alagille, my dad has health issues, and very recently, someone in our life has been diagnosed with cancer.

My Friend, I dedicate my new ''hairdo'' to you, to your fight.  Please accept this as a token of my respect and support.  I am only Joey and I can't do much about your enemy, but I can remind people on a daily basis that it is there, that it is a real battle for far too many.  I had a choice, you don't.  Let me support you morally, and all the other ones who are fighting on a daily basis, including my two little Vietnamese pearls.

Joey xxx

Friday, January 25, 2013

Medical Update

It seems like a while since I have given any medical update on the Girlies.  Yesterday was a busy day with 3 medical appointments with different specialists here in Kingston.

Results of the genetic testing are back.  It is now confirmed 100% that the girls have Alagille Syndrome with JAG1 being the faulty gene.  There is a 50 % chance that they may transmit Alagille to their children.  Alagille occurs in about 1 in every 70,000 births and is equally common in boys and girls.  The geneticist also made a point of warning us that the girls have small blood vessels and that any bump on the head should result in a trip to emerg to make sure there is no bleeding in the brain.  Follow-up in a year.

The buildup of bilirubin in the blood is causing the girls to be very itchy.  We are starting Benadryl twice a day to see if it helps.  Dr. is making a referral to CHEO with hepatology.  Also, g-tube should be installed end of Feb, early March.  The girls are gaining very well.  From 4.480 kg in Nov, Phuoc is now at 6.28 kg.  From 4.985 kg in Nov, Binh is now at 6.65 kg.  The girls are on continuous feed at night for 10 hours straight, and also receive bolus feedings at meal times.  All that is done with the feeding pumps providing the Peptamen.  Anything else, which is *very* minimal, going in the mouth is considered to be only of a therapeutic nature, most likely not absorbed by their system.  We are hoping that the Ursodiol will drain bile from the liver and that there will eventually be some absorption.  They love the taste of butterscotch pudding and sometimes ask to taste whatever we are eating.  However, most of the time, they refuse to put food in their mouth.  liver disease tends to make people nauseous.  They like soothing on a bottle of Peptamen when they go to sleep at night, while receiving from the tube.  We are now working on increasing the feed rate at meals to about 210 ml/hour.  They are at 55 ml/hour at night.  It is very touchy with them since the slightest increase tends to make them puke everything, including all their meds.  It looks like liver functions are still good and damage to the liver is minimal.  So no transplant in the near future.

Results show that calcium and phosphate levels are up and that the healing process for the rickets has started.  However, vit D levels are still undetectable for Phuoc (less than 8) and *barely* detectable for Binh (12).  We are now looking at the option of intra-muscular vit D.  Dr. needs to get back to us on this.  We are continuing with 5000 IU of regular vit D and also with semi-activated vit D (alfacalcidol). We need to test levels of vit A, E, K.

The girls are moving around a lot, sitting up, starting to make a lot of sounds.  They are doing very well, considering where they were when we arrived in Canada.  The main focus for now is nutrition.

Thursday, January 24, 2013

A Lesson of Compassion

I believe a more appropriate title for this post would be ''All I Ever Needed to Know, I Learned From A Six Year Old.''

My husband and I have a pretty straight forward approach with our children about the realities of our world.  We do not sugar coat it, we present the facts as they are.  And it has been the case for a long time.  Yes, we live in a world that is not always what we hope it would be.  We make it our duty to remind our children that we have it very easy, and that all that matters is to love and be loved, to have a shelter over our heads to protect us, clothing and food on our table.  I like to thank Life everyday for what it has brought to us.  I remember when I was a little girl, I would watch World Vision on tv and feel a calling: how can I help those poor children?  I did not have the courage to follow my instincts in my late teens and early twenties as pressure to be like others was too grand.  It's only in my thirties that I found the answer to this question, when Life granted me the privilege of being a mother.  Luckily, Michael and I woke up and gradually worked on becoming less and less attached to material stuff: mind you, when your family grows faster than your salary, you sort of have to readjust your way of living.  And I am grateful we did.  Life has a way, a plan.

Our trips to Vietnam have shaped even more who we are now.  Our children love hearing the stories we have to share with them.  They are thirsty for experiencing what we have experienced.  My 3 older sons are especially touched by the homecoming of their little sisters.  They are mature enough to share with us the fact that they felt scared and helpless when they first saw them.  They were scared to see them leave us definitely, and they grew attached to them very quickly.

My six year old little boy is a very tender soul, I would even call him a humanist.  A couple nights ago, as I was doing my ''rounds'' to kiss everyone and tuck everyone in, I heard him as he was sobbing in his bed.  Noah's greatest wish is to see everyone on earth with food, shelter and clothes on.  He was consumed that night with the fact that this is not the case.  ''What can we do?  It hurts me so much inside to know that others like Binh and Phuoc need help.''  It is in our plans to bring all the children to Vietnam to explore those roots that are now part of our family.  Noah knows it and is looking forward to that big trip someday.  ''Maybe I could have a lemonade stand to collect money for the orphans?''  He made me promise we would go to a store in Vietnam and that we would buy food for the Poor.

What do you tell a little boy in front of all that misery, especially when he feels so helpless?  I told him that for now, he was doing a big deed by loving his adopted siblings and welcoming them into the family with such kindness and wide open arms.  I told him to follow his heart, always, because he has a good heart who wants to do a lot to help others.  I told him not to listen to people who tell him he should do otherwise.  I told him to listen to the good voice inside of him, that that voice will guide him into doing great things.  And I know that for a fact.  My son is a good seed of compassion.

I love you my son, and I hope to be the witness of many walking in your footsteps.  You are a grand humanist of your generation.

Many of us, the Grand Adults, should be more like my Little Noah.

Saturday, January 5, 2013

Two Months Anniversary and GI Update

Today marks our two months adoption anniversary.  Looking back at it all, it is quite a blur: so much happened in such a short time, it almost made our heads spin!  It is amazing to see how fast we adjusted.  The girls are very comfortable and happy in their new environment, the other seven wonders love them, and Michael and I are settling in just fine with our new medical normal.  We have ventured out twice so far with the pumps, we just need to fine tune a few little details to make their use easier in public.

Phuoc came right out of her shell.  You have to watch her as she rolls all over the house.  She can travel quite a distance in a short time.  She has a ''silent but deadly'' side in her.  Gates and doors became mommy's new obsession: you have to obsess over something...!  Phuoc can now even sit up on her own for short periods of time.  She loves the ''saucer'' and has the cutest little shy smile.  We can work giggles out of her.  She seems to be the more independent of the two.

Binh is the little ''needy'' one.  She is fine as long as there are people around her.  Daddy walks into the room and she claps her hands with a big smile, tongue sticking out: he is her hero!  And it makes him feel like a king.  She is sturdier sitting up than her sister and loves sitting up in plastic bins....  To each their own.  So we have a Binh in a bin.  Daddy bought a cute pink one for her.  She does not venture out as much as Phuoc yet, but moves around on her back, pushing on her feet.  I am thinking I should attach a Swiffer on the back of her shirts.  Binh giggles a l-o-t!

In both cases, we are getting chubbier, growing double chins, big thighs and a bum!

On to GI news.  The doctor phoned us yesterday to give us more feedback on further results that came back.  It looks like damage to both livers is very minimal so far, with no sign of cirrhosis.  Very good news.  We will be getting g-tubes once the girls a beefier (March???).  We are still waiting for genetic testing results to come back to confirm 100% Alagille.  GI doctor needs one last blood test to rule out one last suspicion: biopsy showed some indications that they *could* have Alpha-1 antitrypsin deficiency (AAT).  We will be meeting with her on January 24 and she will then make a referral to CHEO in Ottawa for a consultation with the hepatologist.

Hubby is going back to work on Monday, children are going back to school as well, mommy will be resuming a normal routine, only with more children now.  We loved being together, all 11 of us for the holidays.  It will make me sad to see them go on Monday morning!  A busy week ahead with dietician home visit on Monday, blood test for the twins and ENT for the younger 3 boys on Tuesday, and dentist with the younger 5 on Friday.  Binh and Phuoc will be quite a case for the dentist: a lot of teeth erupted in the last 2 months with the increased nourishment, however, they need a lot of TLC.  I have a feeling they will need to be put under for her to do what she needs to do, so I will see if she could do her work when they get their g-tubes installed.  More to think about for mommy;)