Since not everyone has a Facebook account, here is the contents of the About Section of our page:
Binh and Phuoc, 3.5 years old, were adopted from Vietnam in 2012. Both twin girls suffer from Alagille syndrome, a genetic disorder that affects the liver, heart, kidney, and other systems of the body. Both twins are now listed on the liver transplant list, waiting for a life-saving liver transplant to take place at the Hospital for Sick Children, in Toronto, Canada. It could take a long time for livers from deceased donors to come their way. Another life-saving option for each twin is live liver donation.
A potential live liver donor must:
1) be older than 18 years of age and younger than 60 years of age;
2) be in good overall health and physical condition;
3) have a compatible blood type: A or O (rhesus factor + or - does not matter);
4) have a BMI of less than 35 to be worked up for consideration and no greater than 32 at the time of surgery (transplant).
Work up takes 3-4 days in Toronto. At the time of surgery, donor can expect to be in hospital for 5-10 days. The donor can expect to be off work for about 6 weeks. The donor's liver will regenerate and regrow to its original size within 6-8 weeks.
The Trillium Gift of Life Network can offer financial help through their PRELOD program.
http://www.giftoflife.on.ca/resources/pdf/PRELOD%20FAQ.pdf
Please note that REGULATIONS PROHIBIT FAMILIES OF RECIPIENTS TO FINANCIALLY HELP POTENTIAL DONORS.
If you are interested in being a live liver donor for our daughters, please contact:
Toronto General Hospital (UHN)
Living Donor Assessment Office
416.340.4800 ext: 6581
and specify that you are willing to be assessed to donate to either THI BINH LA or THI PHUOC LA (date of birth 14 May 2011).
You can also go to their website:
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/LivingDonor_LiverDonorManual.pdf
or print the Donor Health History and fax it at 416.340.4317
http://www.uhn.ca/MOT/PatientsFamilies/Clinics_Tests/Documents/MOT_PF_CC_LivingDonor_DonorHealthHistoryForm.pdf
Please ''like'' this page and share widely.
In the name of Binh and Phuoc, we thank you for your consideration and your help.
Johanne and Michael
parents
Saturday, January 3, 2015
Friday, January 2, 2015
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Hello All!
In a nutshell to sum up the last year and a half, the girls have been put on the waitlist for a liver transplant. Yes, TRANSPLANT!!! This happened on December 3, 2014. It has been a long road and I have isolated myself traveling it. This explains the lack of blog posts.
I reached a point where it seemed nothing was happening, like we were frozen in time. I even tried to bring myself to acceptance that there would never be a transplant for them. And just as my husband and myself had resigned ourselves that what was was going to be, the liver team at Sick Kids announced that it was time to list. It came as a big surprise as we were totally unprepared. Basically, we were told that there were no more gains to expect, that the livers were in acute cirrhosis, with lots of scarring, and that in order for them to survive, a transplant was necessary.
Back in December 2013, we were even admitted at Sick Kids in Toronto for a pre-transplant assessment. I was hopeful back then that they would be listed. The team decided otherwise, claiming the risks were still higher than the benefits, and that the main reason to list would be mainly for quality of life. We are now beyond the quality of life business.
Now what? We are now waiting for 2 livers to come our way. Cadaveric donations could take a while. Another option is live liver donations.
In order to raise awareness and hopefully interest, we have created a Facebook page that contains a lot of info and links. Here is the link:
https://www.facebook.com/pages/Liver-Transplants-for-our-Vietnamese-Twin-Girls/1401239010168456
Please VISIT the page, LIKE the page and SHARE it widely. And please CONSULT the ABOUT section of the page.
We are hoping for livers from type A or O potential live donors, who are physically healthy with a BMI below 35 to be considered. BMI must be below 32 at time of surgery. Potential live liver donors must be between 18 and 60 years of age.
Did you know a liver from a live donor will regenerate to its original size within 6 to 8 weeks?
Thank you for visiting us!
In a nutshell to sum up the last year and a half, the girls have been put on the waitlist for a liver transplant. Yes, TRANSPLANT!!! This happened on December 3, 2014. It has been a long road and I have isolated myself traveling it. This explains the lack of blog posts.
I reached a point where it seemed nothing was happening, like we were frozen in time. I even tried to bring myself to acceptance that there would never be a transplant for them. And just as my husband and myself had resigned ourselves that what was was going to be, the liver team at Sick Kids announced that it was time to list. It came as a big surprise as we were totally unprepared. Basically, we were told that there were no more gains to expect, that the livers were in acute cirrhosis, with lots of scarring, and that in order for them to survive, a transplant was necessary.
Back in December 2013, we were even admitted at Sick Kids in Toronto for a pre-transplant assessment. I was hopeful back then that they would be listed. The team decided otherwise, claiming the risks were still higher than the benefits, and that the main reason to list would be mainly for quality of life. We are now beyond the quality of life business.
Now what? We are now waiting for 2 livers to come our way. Cadaveric donations could take a while. Another option is live liver donations.
In order to raise awareness and hopefully interest, we have created a Facebook page that contains a lot of info and links. Here is the link:
https://www.facebook.com/pages/Liver-Transplants-for-our-Vietnamese-Twin-Girls/1401239010168456
Please VISIT the page, LIKE the page and SHARE it widely. And please CONSULT the ABOUT section of the page.
We are hoping for livers from type A or O potential live donors, who are physically healthy with a BMI below 35 to be considered. BMI must be below 32 at time of surgery. Potential live liver donors must be between 18 and 60 years of age.
Did you know a liver from a live donor will regenerate to its original size within 6 to 8 weeks?
Thank you for visiting us!
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.
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!
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
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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