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...

Wednesday, April 3, 2013

The G-Tube Adventures

I had promised to give news right after the surgery: I did not.  So sorry.  We have a few excuses...

We have learned one thing about those little girls, they are unique.  And they have to do their thing, their way, and on their own schedule.

First off, the surgery was a smashing success.  Foley tubes in, no complications, and with the help of the ever so friendly staff at KGH led by dr. W, we went up to our familiar room after a 24 hour stay in ICU to settle in for a maximum of 2 days recovery.  Now this is where the fun starts.  First day went well, feeds going in well, being well tolerated, tube site nice and clean, it really looked like we would be out the day after.  Phu-Phu (Phuoc) decided otherwise.  She started a fever, which we later discovered was the same virus some of her siblings had had.  That kept us in for an additional 2 days as we went for more investigation.  After all that, we ended up going home on Friday.

Saturday started out as normal and then Binhie (Binh) decided that this tube was not fit for her.  The hole became progressively bigger, and bigger, and the leakage became progressively grosser and grosser.  Gastric contents pouring out with her moving everywhere.  So needless to say, Sunday we were off to the ER.  The hole went from the size of a pea to the size of a ''loonie''($1 Canadian coin).  After a brief stay in the ER, we were back to our very familiar room, same floor as usual.  An important note to this event, Binh cried from the moment she left the house for a steady 24 hours.  I guess she missed her sister...    And to add to the fun, Binhie decided to break a fever, which placed her and daddy in isolation.  By the way, the fever was caused by the same old virus that had been making its way through the family.  In the mean time, at home, Phuoc was lethargic, refusing any contact, missing her sister.

However, all things happen for a reason, and Binh received a much better replacement tube, a Mic Key type tube made of silicone.  So again, things started to look up.  At the same time, Johanne was at home with Phu-Phu, whose hole progressively got bigger and bigger, with leakage grosser and grosser.  Monkey see, monkey do.  Same thing.  Minus the fever, minus the hospitalization.  Phu-Phu got a new tube as well.  Same as Binhie's.  Again, Binh and daddy were getting ready to go home.  And on that perfect day, daddy woke up to a very bloody leg.  Binhie decided to rip out her IV in the middle of the night, which caused quite a lot of blood leaking for a little girl.  The nursing staff managed to get the situation under control, IV restarted, and back to sleep.  And that's when the real horror show started.  Binh started to have an innocent nose bleed which blossomed into a code call over the hospital PA system calling the emergency team to our familiar room.  To be clear, Friday the 13th Movies had less blood involved.  So needless to say, we did not go home.

The hospital did some preliminary tests to be sure we would be safe to travel to Toronto.  I forgot: I am putting the cart before the horse.  We had a scheduled appointment with a team of specialists in Toronto on March 28.  Medical people in Kingston were doing their best to ensure we could make it.

So in the end, everything worked out, Binh just had an epic nose bleed and we were cleared for a road trip to Toronto.  Both Mom and Dad were looking forward to this trip.  We had our outstanding friends in Kingston ready to look after the kids that day, we had the vehicle ready, everything was packed and ready to go, mom was even showered at 3 am when Liam announced: ''I think I'm gonna throw up...''  Plans tend to change quickly in this family.  And it's true what they say: you know who your really good friends are when you can call them at 3h30 am and say hey, wanna go to Toronto???  And they simply say ''All right, I'll be ready in an hour''.  So the van left for Toronto with daddy, the twins, big sister Fiona and really good friend, and mommy put back on her pj and snuggled with poor little Liam.  P.S. Liam turned into the ''Pukosaurus'' later that day.  Our new type of dinosaur.  And then Noah needed to be picked up from school, sick as well.

The drive to Toronto was perfect.  We arrived at Sick Kids Hospital without an issue.  We met a complete new team of doctors who specialize in Alagille syndrome.  Their case was discussed at length, followed with the usual blood tests and an ultrasound.  Really nothing new came out of the meeting.  The team in Kingston has been doing a very good job with the girls, but this new team is going to monitor the girls' bloodwork and we will be seeing them again in June.  The common theme seems to be that the girls need to overcome some of their nutritional issues before they truly can make a clear assessment and provide truly long term treatment options.

To wrap it up, we are all back home.  Their site is now healing quite well.  It is now the size of a nickel ($0.05 Canadian coin).

In closing, we cannot say enough how amazing the surgeon here in Kingston is.  She is truly committed to her patients and has a quick wit and is just a genuinely nice person.
Old tube, before it failed.

Neat new tube.

Hole healing well.

Venting the tube to expel gas from the stomach.

Phuoc visiting her sister in hospital.  They were happy to be together again.  They truly missed each other.

Finally back home together in our bed.

My two warriors.

Sunday, March 17, 2013

From NG to G-Tubes

I am up early, quiet, as the other 10 members of the family are still sound asleep.  I am getting ready to go out for a 26km run this morning and psyching myself up as it is minus 18 degrees outside.  Training for a May marathon is Canada makes you run under extreme temperatures, going from minus 20 degrees up to plus 30 degrees in a 4 months span.  I love running though as it keeps me focused, positive and healthy.  And if the caregiver does not take care of herself, who will???

We will be going back to the hospital tomorrow as the girls will finally get their long awaited for g-tubes.  A gastrotomy tube (g-tube) is a tube inserted through the abdomen to deliver nutrition directly to the stomach.  A nasogastric tube (NG tube) is passed through the nose and down through the nasopharynx and oesophagus to the stomach.  The girls have been on NG tubes since the end of November.  NG tubes need to be replaced on a weekly basis and from what I can see, it is not a pleasant thing each time for the girls.  I on the other hand have become quite a pro at inserting them!  But the girls never got used to the procedure...  They would see me get the stuff ready and start crawling away from me, giving me the evil look. Also, NG tubes can move from the stomach to the lungs.  This means that each time you are to inject meds or food, you first have to check placement of the tube by blowing air in the tube with a serynge while you listen with a stethoscope for a ''pop'' sound in the stomach.  G-tubes don't move, therefore, the checking placement step will be eliminated.  So no more tube and tape visible, and easy to yank out.  This should make things slightly easier.  However, I must admit it hurts Michael and I that our little girls need that to survive.  We are a bit nervous about learning to take care of the site (stoma) but I am confident we will be ok.  Anyway, we do not have a choice.  You do what you've got to do.

The hospital will call this afternoon to let us know what our OR time will be.  The procedure is expected to take 90 minutes for each girl.  We are told that, providing everything goes well, we could be out of hospital as early as 48 hours later.

This will be a busy week but we managed to organize care for the other 7 wonders and Michael and I will once more split shifts in hospital, ensuring our darlings are never alone and that the home front is also covered.  We are getting used to this!

As far as the transplant thing goes, we have one more step to cross before we meet the transplant team.  We will be off to Toronto (Sick Kids Hospital) at the end of the month to meet with a hepathologist specialized in Alagille syndrome.  She is the one who will make the last call.  We sure are keeping our toes and fingers crossed that we will make it to the list.

Will update the blog after the surgery, hopefully tomorrow or the next day.  Enjoy a nice Sunday everyone!

Wednesday, February 27, 2013

Then and Now...

Phuoc Nov 2012

Binh Nov 2012

Phuoc and Binh Feb 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. 

Sunday, February 24, 2013

On the Road to Transplant?

We went to Ottawa to meet with the hepathologist at CHEO on Thursday.  One word to sum it up: wow.  What an amazing doctor, what an amazing liver team with the dietician and the contact nurse.  We feel so well taken care of, once again.  Those who complain about the health system in Ontario must not need it as fast as they think they need it.  The girls are really sick and we feel we are getting the care they need in a very good time frame.

We sat with the hepathologist before she examined the girls and the biggest issue is the itchiness (caused by the bile acids), which is the most annoying symptom of Alagille syndrome.  No word of a lie, the degree of itchiness seems to be going up by the day.  The doctor examined the girls and the first thing she noticed is their spider veins on their abdomen, a sign of cirrhosis.  Also, the girls' livers are very big and hard, and so are their spleens.  She is worried about internal bleeding and wants to make sure the girls are placed on the transplant list earlier than later.  In other words, she wants to make sure they are on the list before it becomes an emergency.  Blood tests were done on Phuoc.  They tried on Binh but were not able to draw any blood.  We received a phone call on Friday with Phuoc's preliminary results showing high levels of AST, ALT, Bilirubin and Conjugated Bilirubin.  Binh will get another shot at blood tests tomorrow Monday when we see our pediatrician here in Kingston.  The doctor also wants a scope done as soon as possible, here in Kingston or at our next visit in Ottawa.

Once we have all of our numbers and data, it looks like we would then be referred to the liver transplant assessment team at Sick Kids in Toronto.  The assessment takes 3 days of multiple testings and you end up with a score to place you on the list.  If everything stays the same, no complication, it could take 2 years to get an organ.  If things get worse and the girls end up in the hospital, their score changes and they go up higher on the priority list.  Anyway, this is the way we understood it works.

For sure, a liver transplant will not cure Alagille in the girls.  Alagille is there to stay.  However, we can hope that with a new and healthy liver, they would do better, particularly with absorption of nutrients.  With a transplant starts a whole new game, the rejection issue.

Tuesday, February 19, 2013

G-Tubes, Here We Are!

Good news, we finally got a surgery date for the girls' g-tubes: March 18 it will be.  We are happy since it seems like it will be easier on everyone, starting with the girls.  No more tube in the nose, no more tape to hold everything in place, no more checking placement for mom and dad.  Each girl has an enlarged liver and spleen which complicates the procedure a wee bit, but we are confident that they will do fine because they are little fighters.  They will have a piece of tube hanging out for about 6 weeks until the surgeon installs the Mic-Key button to cover.  Something else to learn about.  They both gained a lot of weight, each having finally reached 7kg.

We are heading to Ottawa on Thursday to meet with the hepathologist.  Michael and I are hoping that the girls will be referred to the transplant team in Toronto for assessment.  The itching has increased considerably and it is hard as parents to see them distressed and dependent on meds in order to get a bit of relief.  I have heard of biliary diversion (internal and external) to treat pruritus and I would like to hear what the specialist has to say.  Also, both Michael and I are willing to see if we could be living liver donors.  It will be a very interesting appointment and we are looking forward to it.

The last month has been busy for the Wagner family.  We celebrated Tet (Vietnamese New Year), eating yummy food and decorating our home with red lanterns, and everyone has gone back to their usual activities after the Christmas break.  Fiona enjoys her tap and karate, Grace her ballet, Rose her Pathfinders and karate, Noah his karate, and the last 3 little boys are busy with just about anything.  Liam and Logan go to school half time, and I started to take Toan to a little kids club 2 mornings a week.  I officially started my marathon training a month ago and Michael does a lot of his runs with me: it is our little special time.  My marathon is scheduled for the end of May, providing that I can remain injury free until then.  Since this will be my first one, I don't feel any pressure to beat a personal best, which makes the whole thing fun.

We are already starting to think about what next summer will bring and we have pretty fun ideas for the kids in mind.  All in simplicity.  Isn't it the best way to go???

I will write another post later on this week after the specialist in Ottawa.

Monday, February 18, 2013

Je n'ai pas besoin d'amour / I don't need love

Beautiful song from Celine Dion  - If I had talent, that's how I would describe my life.  For my English readers, here is the translation.  Enjoy, as much as I did when I first heard the song.

No, I don't need love
I've someone everyday
In my arms
No, I don't need love
I don't need moon
I've some kisses that light up better than all stars

No, I don't need flowers
Words sprout in my heart
No, I don't need dreams
I don't need lovers
Wind blows out
Night goes to sleep, singing
As I'm rocking my family

A little little great happiness
A beautiful gift from life

I don't need love
I've got friends that surround me
I've got my arms full of happiness
No, I don't need love
I don't need moon
I've some kisses that light up better than all stars

A little little great happiness
A beautiful gift from life

You're not the love of my life
You're the life of my love
My little little great happiness

No, I don't need flowers
Words sprout in my heart
No, I don't need dreams
I don't need lovers
Just one day without embracing you
Leaves fall out
Help Help
I need love..

(Jean-Pierre Ferland / Daniel Mercure)

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;)