30 day Challlenge Starts Today

Woke up to some really nasty weather!! Up at 6 am to do Kourtney's dressing change, with our ever faithful caregiver Kim!! The last few mornings, Kourtney is much happier. Once she gets over the whole waking up feeling ( you know that feeling when you are in a deep sleep, and being woke up to face the day). My plan is to go for a 5 km run this morning, I was going to do 8 but if the weather doesn't clear up I am thinking I may die of exposure--- ha ha, not really.

The dressing change went smoothly, nothing really new to report. This week we have been doing them every 48 hour. It would be nice if we could stick to this regime, her skin does fine, but by day number 2 the odour is a little much.

Before the run!

After the run!!!!

Slowest time ever!! All the rain and traffic!!

The decandant Chocolate Temptation that I over came!

 So I did well, until supper when we got to Bellingham, and I was ravenous!! Not sure what I will have to do to curb my appetite!!! Here is to day number 2!!!

April Showers = MAY Flowers, But What Do May Showers Bring???

The Month of June reminds me of . . . November. It may be a westcoast thing but the dreariness of this month has left its imprint as a month "just to get through" to get to the lazy days of summer. In the past there have not been any year end swimming parties to which the rain has not shown up as an uninvited guest.  Instead of swimming in our pool, everyone comes inside,watches a movie with the fireplace on,

This June brings a different twist . . . final exams. I have to say though, this semester, Kourtney has really organized herself well and has become independent with her learning. Thanks as well to Kelly who has  helped Kourtney a lot with her math and encouraged Kourtney in studying science.  Final exams just don't seem as overwhelming as they did in January. Side note, Kourtney continues to do well, however, I am starting to notice a decline in her energy.  A blood transfusion may be the end of school parting gift!

However, to get through this month I have decided that June will not get the best of me but I will get the best out of June. A 30 day Challenge of sorts - exercise everyday, two smoothies a day and a regular meal for supper!! - of course I will blog regularly- I will try every day!

The goal is to overcome the June Blues, and take advantage of the one month of regular routine! (oh and my nephew is getting married in July - I want to be the spanx free auntie!

Oh how I love SUMMER!

Shaelyn and I made it safely back from Moncton, NewBruinswick. We had an amazing time with my parents and my friend Lorraine. As well we enjoyed what brought us to the tiny town . . . skipping. Shaelyn's team did amazing coming in 3rd place overall.  Shaelyn kept up with the girls in her age category and came in 6th in her age category!!

It was an amazing time away, the best part is feeling a part of the community of amazing people!!

Lorraine and I at GreenGables

Believe it or not I was at the delivery of the lady sitting there!!

The red iron rich soil!

My dad Loving the Old House!!

The Atlantic Ocean!!

The Capital of PEI- Charlotte Town Legislative Building!

Hopewell Rocks, the tide comes in and completely covers the rocks!!

The scenic view!

Team BC and the sea of French braids!

OVERDUE UPDATE

My girls with attitude!!

Truth be told, I have been a little afraid to blog. It just seems life is too good to be true. It really all started after the meeting with Kourtney's two doctors when we discussed the bone marrow options. Since then it feels like a huge weight has been lifted from my shoulders. There has been some progress with this but I will leave it for another blog post.

Kourtney and Kourtney

Enjoying the Arizona sunshine

Our trip to Arizona was so amazing. We enjoyed the sun, but the best part was being with "The Arizona Kujawa" family. The welcome mat was extended over and over again, and we loved every second we spent with this family. Once again we were reassured that our Kourtney could not have a better name sake then the original Kourtney Kujawa. Her inner and outer beauty radiated to all of us, and especially to Kourtney. As well, cousin Natalie shared with us and made us laugh and cry with her. We are so thankful that we were allowed this trip, and hope to make it an annual adventure.

The Lutzer family!!

Kourtney, Kourtney and Natalie!
 

Game of keep away in the hotel pool!

Over the last 2 months we have enjoyed our reprieve from Children's Hospital visits. We have found that if Kourtney misses even one day of school she gets behind so quickly. So, although we still should go in regularly, to see physio, OT, dietitian, dentist, dermatologist, pshychologist and the list goes on we feel that education is so foundational to Kourtney's future that there has to be a balance and for now it has to be tipped towards her education.

Kourtney is doing extremely well in school. She has taken more ownership of her education and has soared!  Although she has many open, slow healing wounds, there are no more infections, minimal pain and she is sleeping very well at night. The dilatation has done wonders as she is now able to swallow easily and the transfusion has helped her energy level. At this point the positives outweigh the negatives.

I often think it would be easy for me to walk with a swagger right now and think,  "Wow, I must be doing things right."  I feel great, exercise regularly and am running faster then I have in years. I have had energy to spring clean and I love my job. Todd and I are getting along better than ever. We have been blessed with amazing friends (the Vissers) relatives close by (The Lutzers) and far away relatives in Arizona and Regina that we can truly call friends. We have 2 sets of parents who are always there in times of need, amazing caregivers, we are being blessed financially and the list goes on.

Shaelyn and cousin Clarise!!

Shaelyn has been doing very well in her skipping this year! We had a little chat at the beginning of the year about her being at the top of her age category (10 -11 year old), and if she was going to do well, this year would be the year. She took that challenge on and was doing well at all of her tournaments. There was a provincial tournament last weekend, which would determine if she would compete in a national competition in Moncton, NB. Her "team" of four would be competing, but in my mind I thought it would be very nice if she would be able to compete individually as well. I was feeling that she would have a very good chance at placing and was excited to see her do well at the tournament. However, my plans for her placing individually were altered when her cousins from Kelowna arrived. Shae's head space was taken up with ways she could spend time with her cousins rather than concentrating on her skipping.  Even to try and talk to her about how she was feeling on the weekend was met with a really bad attitude, as well as her lament about her cousins. One has to understand, Shaelyn is the most non-competitive child and spending time with family means everything. She is dedicated to people.  Her only concern at the tournament was whether or not she would win the raffle prize.  I am not sure how Shaelyn has not inherited my competitive gene. I am so competitive that when I don't get a 5/5 on my dental hygiene at my orthodontist appointments I feel a little upset.  So the short of a long story. . .  she tanked in her individual competition. I was horrified to watch this go down, and felt physically sick when Todd and her broke the news that she didn't even place in the top 8.

 So the heart to heart talk began, to see if Shaelyn actually wanted to skip. Big crocodile tears rolled down her face when the option of not skipping next year was put before her. Between the 3 of us we concluded that she would skip but the attitude would have to change. Todd and both had to ask the questions about how hard do you push your child to win? We both came up with the same answer - and truly were able to say that we would rather have a child that is so easy going and puts others ahead of herself. What is so wrong with that?

I am not in control!!!

I really wrestled that night with God. I just wanted something to be easy for my girls. But once again that sweet small voice gave me a song. I was once again brought to the place of humility, and realized that, "I will not boast in anything, no gifts, no power no wisdom, but I will boast in Jesus Christ, His Love and Resurrection". I got taken to the point of complete humility . . .  only to receive an email the next morning from the coach, that Shaelyn will be competing individually because some of the other athletes from BC won't be attending. So,  Shae just squeaked into the individual competition level. It is the constant reminder that I am not in control of anything. Seems to be my life story.

Happy Birthday Shaelyn!!

This one is all about Shaelyn.

 I have to say switching schools was by far the best choice we could have made for her.

The following post comes with a disclaimer. When reading this, we fully appreciate that having the privilege of going to school with one's dad is not something just any child can do. But Todd and I both  recognize that although Shaelyn's physical body is not afflicted with EB, her emotional well being is affected by it. Her needs are often secondary in our home. She faces the turmoil of dressing changes and often becomes the target of Kourtney's misery as soon as she walks into the room (that being said, it isn't always a EB thing but a sister thing).

Last year it was a battle getting her to school, and she would have tummy aches every morning.  This year she always has a smile on her face when she crawls into the backseat of Todd's electric blue Jetta. The 35 minute ride into Maple Ridge is good downtime for her as she plugs in her iPod and sings to her music.

Last year I dreaded picking her up from school as she greeted Lexi and I with the "complaint of the day".  I would have to stop her when she complained and make her tell me at least one good thing that happened. For her it was very difficult to do. This year there are only positive, happy stories and all I see is a happy confident Shaelyn.

Last year she would come home hungry as she would not eat her lunch. She is a picky eater, and would not eat sandwiches, nor did she like cheese or meat as it was " sweaty" after sitting in a thermal lunch kit all day. This year, she gets her lunches heated up for her by her dad, her diet is so much better- a little spoiled? I have to say no, because the mornings are still taken up with dressing changes. That the extra little touch goes a long way for her.

The biggest improvement has been in her skipping. At the beginning of the year, Shae would complain bitterly about going to practice. In November she performed half-halfheartedly in one of the record events. I have to admit - I am just a little competitive, and Shae isn't at all. So I had a bit of a "heart to heart" talk with her. I told her that this would be the last year of skipping if she continued to complain every time I would take her to practice. I also said that I really think she could push herself more in the speed events, as she barely broke a sweat during the 3 minute speed event. She rose to the challenge, became so much more positive, set goals for herself . . . and yesterday at the records day event, showed improvement, and even placed in everyone of her individual events. Proud mama bear and papa bear for that matter as well.

I feel that all children need a chance to be heard, although not many people have the luxury of changing schools and choosing their teacher, it is very important to find out why your child is not happy or doing well. For Shae, it was recognizing what her capabilities are and nudging her along the way. I don't want to be one of those parents that push their kids until they are bitter, but I want to do what is best for their own individual needs.

Keep reaching for the top Shae, follow God's plan for your life, and see the beauty that following God can be.

Happy Birthday my dear one!!