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. 

Rowan Turns Four and Broviac Removal

The first major event this last little while was that our sweet, amazing first born turned four!  I am constantly falling in love with this sweet, crazy girl again and again!  I can’t believe how fast she is growing up.  Whenever I pick her up from places like playschool or Sunday school, it takes me a while to locate her.  I realize I keep scanning the room for my little toddler Rowan, after a few seconds I remember to scan the room for my little girl Rowan (usually the tallest kid in the room!) 

Purple birthday pancakes!

Not too please with her blue birthday pancakes.

We had a wonderful Rainbow birthday party for Rowan on Saturday.  Lots of people were able to make it!  There were 10 kids and 5 babies and they all seemed to have a great time.  Luckily the weather cooperated!  We had lots of room in the yard for all the kids to play.   And a big thankyou to Rick for taking all the pictures that day!

Bouncy house fun!

Slip and slide!

Twister!

The kiddie pool was a big hit too.

Auntie Gladys was Daphne's buddy while mom and dad were busy hosting the party. 

She loves her bear "Peachy."  A gift from the ward when she finally left the PICU. 

Cake time!

You can't have a rainbow party without a rainbow cake!  Hope you are not afraid of consuming lots food colouring!

Dessert number two.  Rainbow Jello!  Thanks Cathryn for spending the day setting 6 different jello layers!

The next week we had nothing planned.  Unfortunately Daphne’s broviac broke again on Monday.  This time we choose to have it removed not repaired.  This took quite a bit of waiting around.  We couldn’t get OR time until Thursday.  This was a bit annoying, but on the other hand it feels so much better to not be an emergency case.  Once we were in the procedure went quickly.  We left the hospital at 1pm. 

This will mean Daphne will have to get peripheral pokes for her weekly bloodwork.  Friday’s bloodwork went really well though.  Instead of going to a local lab we will be driving to the Stollery where the lab technicians have more training and experience with little ones. 

Rowan tagged along for Daphne's bloodwork.  She was such a good sport.  Daphne cried and fought a bit when it came time for the poke, but the lab techs found the vein fast and in no time she was back to her usual happy self. 

Removing the broviac feels like a real step forward.  We are really encouraged by how well she is doing.  Now if only she could get more interested in her sippy cup she could lose that NG tube as well.

Broken Arm, National Blood Donor Week, Broken Broviac

The last two weeks have been a blur of activity.  Last week’s major event was Daphne falling out of her bed.  It happened Wednesday evening.  She didn’t seem that upset, but she wouldn’t crawl.  The next day she got an x-ray which showed a greenstick fracture in her right wrist.  Her doctor did not think the fracture was bad enough to require a cast or splint.  She has recovered quickly from it already.  The first two days she refused to crawl, but other than that she didn’t seem bothered.  She held toys with that hand and even used it to pull herself up to standing.  By the third day she started to crawl a bit with it, although when she got tired she started to crawl with her right elbow instead.  Now she seems back to her normal self.  She is crawling all over the place and walking around furniture.  One of her favourite activities is to empty her dresser of clothes.

Our other activities last week was participating in Canadian Blood Donor Week.  On Tuesday Daphne, Rowan and I spent some time at the blood donor clinic here in Edmonton and did some interviews with local news channels.  I was very surprised by just how many we saw.  We were interviewed by Shaw, Global, CTV, City TV, and CBC.  A picture of Daphne and I also made it into the Edmonton Journal. 

Here is a link to the longest interview aired.

http://www.youtube.com/watch?v=UlY2xfBxOso&feature=youtu.be

The need for blood is always there.  Daphne is alive today because of many people.  Amazing doctors and nurses and medical staff played a huge role in this, but they still couldn’t do their job without the donations from regular people.  It’s a simple way for the rest of us to help out. 

Another major event this week happened Thursday.  It was Rowan’s last day of playschool and I had NO appointments scheduled.  I was looking forward to getting tons of stuff done while Rowan was at playschool.  However, in the morning while the homecare nurses were trying to flush her broviac line, the line cracked.  We clamped the line, cleaned it and covered it up with tegaderm.  In my broviac education we were told to go to the emergency room if the line is damaged in anyway.  I did get Rowan ready for playschool first and then Daphne and I left for the hospital.  The transplant coordinator got us into 5F3 (so glad we could by-pass the emergency room!)  There some nurse educators were able to repair the line.  The process for repairing the line seemed pretty straight forward.  The nurses knew exactly what they were doing.  Daphne hardly noticed them working on it, she was too mesmerized by Toopy and Binoo on Treehouse.  We did have to return four hours later, after the glue had set to see if the line was working and it was.  It will be nice that her weekly bloodwork can still be taken without poking her for it. 

Another thing that happened this past week was letting our monthly parking pass expire.  This might sound like a mundane occurrence to include in this blog, but to me it feels monumental!  We have been renewing our monthly parking pass since October.  During her PICU time we kept two parking passes.  Since her transplant discharge every time the pass was about to expire it seemed like something would bring Daphne back in.  With daily parking costing $15 dollars renewing the pass just made more sense.  However, this time when the pass was about to expire, there was no need to renew it!  Daphne is down to monthly visits with the transplant team.  Monday was the first time I had to pay for parking as I left the parkade.  I’m sure the parking attendant had never seen someone so happy to pay $7 for parking for two hours.  It’s just such a concrete reminder to me of how far Daphne has come!

Summer Happenings

It finally feels like summer is really here.  We have been busy out and about it seems.  We love visiting “The Horsie Park” also known as Fort Edmonton. 

We have also been to the zoo.

We have also been spending time in the backyard.

Today we did the Stroll for Liver at Emily Murphy Park.  We had a great turn out.  A big thank you to all those who supported “Team Daphne!”  We raised over $3000 and had a great morning outside today. 

As for Daphne she has been doing great recently.  She is an absolute delight!  It seems since she has become such a good crawler she is so much more content.  This week she has also gone from continuous feeds to bolus feeds.  That means instead of having her formula pumped into her all day, its now done in 4 meals during the day and 5 hours at night.  Its so  much nicer letting her crawl around without being connected to a pump all the time. 

Some very important changes were made in her meds this week as well.  It turns out one of her meds was given to her in liquid form which means it had sorbitol in it.  Turns out sorbitol is a laxative and should never be given to babies.  I am so glad they discovered this mistake and corrected it.  The med has been changed to the powdered form.  I am hoping her electrolyte issues resolve now.  Changing a few less diapers a day will also be a bonus!