Donate for Daphne: Third Trasplantiversary

Daphne is approaching her third transplantiversary.  We are so pleased that she is here with us.  She is a happy, healthy three-year-old.  We have been thinking a lot about how many people have helped bring our family this far.  The medical care that has brought Daphne this far has been outstanding.  We would love to give something back.  Seeing that there is a current blood shortage we thought it would be fitting to start a blood drive. 

On November 22, we have 50 spots available at an Edmonton mobile clinic held at Grace Point Church of God.  Please call 1 888 2 DONATE or use Canadian Blood Services to book your appointment.  For those who are in Edmonton and would like to take part at a more convenient time, there will be a "Donate for Daphne" sign up sheet at Canadian Blood Services main clinic from November 17th to December 17th.  I would also like to encourage friends and family in other provinces to donate at their local clinics, this is a Canada wide shortage. 

They do say one donation can save a life, and Daphne has had many small transfusions of one unit of blood at a time, but she has also needed massive amounts of blood at once.  Liver transplants are very difficult and require many more units than that.  I have heard that 30 units is standard, but Daphne used much more than that between her first and second transplants due to how difficult her surgeries were.  During Daphne's most critical moments she was losing one cup of blood every 15 minutes.  We are so thankful that the blood was available and she got through it all. 

For those who are new to Daphne's story, feel free to follow the link to her transplant story. 

Many people often say they would love to help if they knew how, this is how.  Please give blood if you are able! 

Daphne is Two!

This week we celebrated Daphne’s second birthday.  She has a bit of a Hello Kitty obsession so we had a Hello Kitty birthday party for her. 

 

 

 

As a two year old, Daphne is delightfully determined!  In a less charitable mood I would call her a little dictator.  She is extremely opinionated on what she wears.  It is very difficult to get her to wear anything without an animal on it.  I was very happy to find a cute new outfit for Easter that had a Pegasus on it.  For some reason even choosing her pajamas in the evening requires a couple of different choices until she finally settles on one. 

 

She is very much a girly-girl.  She loves to comb her hair, unfortunately she will not let me put accessories in it.  Makeup is never safe around her.  Its not uncommon to see a big smear of concealer under her eyes or on Hello Kitty’s face. 

 

 

She is also very difficult to keep contained in a stroller.  We rarely use one these days.  But that does mean she will try to run off on adventures of her own.  If I pick her up to get her going in the correct direction, her usual response is an ear-piercing scream!  She loves to scream.  She did this in front of a police officer when we were walking through WEM and I was worried he might think I was kidnapping her!  She has also embarrassed me in Costco with her scream.  For some reason I had used the word “scream” in conversation with Rowan while both girls were sitting in the cart and she sure was listening.  She screamed automatically when I spoke the word.  She is also developing quite the sense of humour.  The other day when I was playing with Rowan and Daphne and they were being quite hyper, I said “I think you girls need to chill out.”  And with a big smile on her face, Daphne screamed as loud as she could.  As if it say “How’s this for chilling out!”  I have a hard time not finding all of this extremely adorable. 

 

Another bad habit is pushing chairs all around the kitchen to reach whatever she would like.  She sure likes to get involved in cooking dinner. 

 

 

She is also a very reluctant sleeper.  She loves to draw out bedtimes by doing the cutest things.  Sometimes she goes over her entire vocabulary, including animal sounds, before bed.  Sometimes she insists on offering me her "suckie" repeatedly.  Sometimes she even goes so far as to kiss each one of her toes goodnight before bed!  I always put the girls to bed at the same time and we snuggle up on the bottom bunk, just to tease her Brad always tries to give just the girls goodnight kisses, but Daphne never lets him get away with that.  He has to give mommy her goodnight kiss as well. 

 

 

Daphne also has a super sweet side.  She loves holding hands with Rowan and laughing at her sister’s antics.  She loves giving hugs and kisses to all her friends and family.  Mommy seems to get the most kisses!  She also loves her stuffies.  She gives them kisses, tucks them in, carries them around.  Her favourite night-time stuffie is a stuffed octopus we call Ockie.  She also loves her pink Hello Kitty we let her build at Build-A-Bear.  It’s her transplant buddy.  Instead of putting the heart in it when they stuff it, we put a liver in it I had made at home.  Rowan picked out the dress for Daphne's new Hello Kitty stuffie. 

 

 

 

 

Daphne also loves coffee.  She loves any kind of coffee or cappuccino ice cream.  She always tries to steal my coffee and loves when I let her finish the last sip. 

 

 

Puddle jumping is something she has discovered recently.  She loves it, and is so happy any time we pull out her rubber boots.  We have all been cooped up long enough, all of us are eager for all the snow to melt and spend time outdoors again. 

 

 

Medically she is doing well.  Currently we are on our longest run out of the hospital with her!  After her transplant discharge she was on 15 different meds.  Now they are down to 5.  None of which are injections.  She is on monthly bloodwork, monthly transplant clinic appointments, and monthly paediatrician appointments.  And a very recent development is that Daphne is tube free!  She has been tube free for a few weeks now.  That means she is taking her meds all orally now.  She has her grumpy moments where she is not happy to take them, but for the most part she does great with them.  And luckily for us the most important one, tacrolimus, is her favourite! 

 

Well, this post was all about what Daphne is like now that she is two.  We are so thankful for her everyday.  I always say to her "Are you Mommy's little angel?"  She usually replies by nodding her head.  I'll end with a very poorly shot "Birthday interview video" of the girls. 

 

 

 

 

Merry Christmas and Happy New Year

I know this blog post is long overdue.  I have always been a procrastinator.  With the busy-ness of Christmas and the busy-ness of school, putting off blogging was just too easy to do. 

Here is a quick run down of Christmas.   This was a very special Christmas for us.  This was Daphne’s first Christmas at home!  It’s amazing to think how far she has come this last year.  Last Christmas Daphne was in the PICU.  It was Boxing Day that they took her off the ventilator.  This Christmas she was busy helping us decorate.

She also has quite the appetite and can usually be found eating. 

Daphne is definitely not a wimp when it comes to Edmonton winters.  She loves any opportunity to go out!

Here is a video of Daphne and her cousin Meaghan hanging out. 

Here are some pictures of the girls enjoying Christmas festivities.

This is Christmas Eve, the girls are very eager to open presents.  We have never had such an easy time getting Rowan to eat everything off her plate, since she was told there would be no gift opening until she was done!

They were sure tuckered out at the end of the night.

In the morning there was another gift-opening.  They were sure delighted!  Rowan kept saying “This is the best present ever!”  And “That’s what I always wanted!”  Except for when she opened her present that was a book, “That’s not what I wanted.”  I think she takes after her father in that department. 

The very next day was another gift-opening at her grandparents’ house.  It was very special because this was Daphne’s first time in Bow Island. 

Enjoying some Granddad time!

Medically, Daphne is doing fine.  Toward the middle of December, Daphne’s hemoglobin kept dropping.  We were worried that she was having a bit of internal bleeding.  Her aspirin was discontinued and we started giving her iron.  She was also scheduled to have an endoscope done.  I was very uncomfortable with having it done so quickly.  I preferred to wait and see if the changes in her meds would work before having a procedure done, but we went to her scheduled endoscope anyway.  Daphne had quite a stuffy nose at the time and the anaesthesiologist was also uncomfortable with it.  GI was consulted and it was decided to put off the endoscope.  I felt very relieved about this.  Her hemoglobin since then has improved and the endoscope hasn’t been mentioned again. 

We still hung out in the day surgery ward all morning and a nurse seemed quite surprised that despite having nothing done the entire process took so long.  I told Brad this later and we joked that it must have been her first day working in healthcare!  We have definitely learned a great deal of trust and patience when it comes to medical care.  We have always felt that everyone has truly had Daphne’s best interest in mind, so when a decision takes a while to come to, we trust that is because it was a difficult decision to make.  We have also had our share of emergencies with Daphne where there was no hesitation or delay in giving her the best care possible.  So whenever we are stuck waiting around for things, I can’t help but feel blessed that we are not in a life or death situation that makes everyone drop what they are doing to get to Daphne. 

As for my Christmas, I had the best present ever; my whole family at home together, happy and healthy.  Daphne and Rowan are such super sweet girls.  They are both very active, climbing all over everything!  Rowan is very loving.  Sometimes at night time she tells me “I love you soooo much.  I love you too much!  I am never letting you go to work again.”  Daphne is also very sweet.  She loves to cuddle and carry her dolls around.  She feeds them and insists I put real diapers on them.  When I come home from work they are always so happy.  They usually scream with glee.  Our house is quite a noisy one, but it is a joyful noise. 

Nearly One Year Post-Transplant

I have been finding it very difficult to get to updating the blog. 

Here is a quick review of what we have been up to. 

Daphne enjoying her favourite breakfast, Nutella and toast.

Daphne and Rowan enjoying our last fall visit to Fort Edmonton.

Early October Daphne had to be hospitalized for the flu.  She recovered quickly from this illness. 

Rowan was a super hero for Halloween.

Rowan started Taekwondo lessons.

The most difficult thing we have been through lately is Daphne’s current hospitalization.  Halloween evening Daphne was doing just fine playing at her cousin’s house.  I did not take her out trick-or-treating.  She didn’t want to bundle up and it was brutally cold in Edmonton that night.  When we got home she went to bed easily but during the night I noticed she was very warm.  I took her temperature and she was 39.9⁰C.  I called the paediatrician on call at our paediatrician’s clinic.  I also called the paediatric GI doctor on call and Brad took her to the emergency room. 

In the emergency room, when she continued to get worst she was moved to the PICU.  In the PICU she needed blood pressure medication, oxygen, and even some asthma medication before they got her fever under control. 

Unlike other times she has been sick, this time it took her a long time to get back to her normal self.  She was lethargic for quite a few days.  Bloodwork showed that she had an infection in the blood, streptococcus pneumoniae.  The bug was so aggressive with her because she is immune-suppressed, she has had lots of steroids in the past making her not able to produce them as well on her own and also because she has had her spleen removed.  Most children are vaccinated for this one as well, but she was unable to get the vaccine within the first year of transplant.  She will be allowed this vaccine again soon.  I am so glad this isn’t one of the live-vaccines she is not allowed to have. 

Recovery has also seemed slow because balancing her electrolytes can be tricky.  Currently she is still an inpatient, requiring twice daily IV antibiotics.  She has been allowed to come home on pass in between doses.  Right now she is napping in her own bed at home.  Coming home on pass during a hospitalization really means a lot to all of us.  It helps us recharge, relax and feel normal again.

Some gifts from CFR cowboys in Edmonton this weekend. 

We really couldn’t have gotten through this week without the help of so many people.  Brad’s mom, his aunties and his sister have been babysitting and giving us food.  Brad’s dad has driven us around on a particularly rough day.  Neighbors have helped clear our driveway after a very heavy snowstorm.  A parking office employee gave me a free month pass after I had lost the one I just bought!  My work has also been flexible when I needed to leave early.  We could not do this alone.  Thank you so much everyone!

Back to School

Summer went by quickly.  Some of our latest summer activities included Rowan going to family camp for the weekend with her grandparents.  While she was away Brad set up a play structure in the backyard for the girls.  Rowan was so delighted when she got home.  After that she had gymnastics camp for a few days.  My mom also came to visit us for a week.  Rowan had so much fun that week.  Even now when Brad and I get busy with things around the house and she has no one to play with her, she will say “I want Grandma Wall to come over.”  Our last hurrah of the summer included a day spent at the Calgary Zoo and a weekend spent in Banff.  Rowan and Daphne loved it.  When we got back Rowan asked if we could live in Banff. 

Daphne loves her new swing. 

Rowan loves to play in her "playground."

We had a chance to visit the Jurasic Forest. 

Rowan got her first professional haircut.  This was prompted by her own attempt at a haircut!

Daphne loves that water table. 

Rowan enjoyed this statue at the Calgary Zoo. 

Who doesn't love throwing rocks in the water? 

As for Daphne, she has been doing well.  Her pokes are getting more difficult though.  She is very strong and fights them now.  They are still weekly.  Hopefully they will be less frequent soon.  Daphne's major milestone this past month is that she is walking!  Watching her walk is absolutely delightful! 

Daphne loves sliding!

Our biggest news as a family is that I am going back to work.  Wednesday was the staff's first day back.  Going back to work is a welcome change of pace for me.  As for the girls they are staying at home with their Dad.  That sure makes it easy for me to leave for work in the morning.  Brad will also be taking care of our two nieces at the same time.  Brad and four girls!  I am so proud of him.  Here is a clip showing how happy the girls are to all be together. 

How Fortunate We Are

I have really fallen behind in blogging it seems.  The reason for that is a wonderful one; we have just been keeping busy with regular family life.  Daphne is doing great.  Some milestones of hers in the last couple of weeks are her first words!  She started by saying Daddy a lot at everything.  I would encourage her to say Momma too and then she would say that repeatedly, but not necessarily to me.  Now she seems to use Daddy and Momma to call us.  It is the sweetest thing!  She can also climb up a small set of stairs now and a few times she has stood up completely independently.  I think she may take her first steps very soon now.  Her last transplant appointment went very well.  They are all pleased with her progress.  As for the peripheral pokes, they have been ok.  The adults who are getting their blood taken at the same time as her are always amazed by how little she cries.  And when she does cry, it is more of an annoyed cry, like “Why don’t you let go of my arm, I want to play!”   

Rowan has also been busy these last couple of weeks with lots of activities.  She had two weeks of daily swim lessons and last week she went to Summer Day Camp here at McKernan Baptist Church.  Rowan has been a very busy girl!  We will be taking some time off of scheduled activities now to enjoy some more laid back summer days.  I’m hoping to fill those days up with playdates, playgrounds and parks. 

All dressed up for Canada Day!

One of Daphne's favourite outdoor activity, the water table. 

Daphne also loves going for walks in the backpack. 

Rowan at her swim lesson. 

We've been eating on the gazebo more, less floor clean up required!

Trying to beat the Edmonton heat wave. 

"I ate my yogurt all by myself!"

Bathtime.

Rowan going for a bike ride. 

And when Rowan gets too tired she can join Daphne in the bike trailer.