Tonight I heard a sound tonight that always makes me smile, Shaelyn and Kourtney giggling. I love hearing the two of them enjoying each other so much. Lately they have even been sleeping together, it is so cool to see the bond of sisterhood so strong!!
On Friday we went to Children's for a "skin check up" this is something that will have to be done biannually due to the high incidence of skin cancer with EB. Although the skin cancer does not develop until the second decade of life, it is very important that skin surveillance starts in the teenage years so that any suspect areas can be monitored.
Over the last few years I could not wrap my head around the logistics of doing a dressing change at Children's. A dressing change has always required a bath to soak the dressing off and the tub room at Chidren's hospital triggers a post traumatic response in both Kourtney and myself. As you remember the last time a Dr looked at her skin Kourtney's plastic surgeon road his bike out from Vancouver to Abbotsford just to see Kourney's skin.
But over the last six months Kourtney's skin has improved so much that we are able to take Kourtney's dresssings off without a bath.....so we decided that skin surveillance could be done just at the clinic at the hospital. Kourtney seemed to be fine with it but I was very apprehensive not because of the procedure but scared of what they may find. We have been through crisis after crisis after crisis and have had such a lull over the past 6 months that I almost mentally prepared myself to get some bad news ( I didn't share this with anyone-except my bestie:)
On Friday Kourtney was so calm, not one tear or breakdown during the whole dressing off process she was as cool as a cucumber. The dermatologist and nurse were the first ones to walk in and almost did a double take when they saw how amazing Kourtney looked with all of her bandages off. Dr Cautermanche was so pleased with her and always talks to her like she is his only patient in the world. Nothing suspect was found after the scrutiny with Dr Prendivilles' famous magnifying glass. We walked away breathing a huge sigh of relief.
Right now we say life is good. We seize the day! Of course there are things that aren't great but at the moment she is healthy, happy and active, and to me that is the most important.
Sunday, January 30, 2011
Thursday, January 20, 2011
Back to it!!
It is 5 minutes to 11 (am) and I just crawled out of bed. I had a minor surgery on Tuesday and now have been hit with a cold. This is very odd for me as I rarely get sick. I have a week off of work so I am going to take advantage of the stillness of the day to update our blog.
I realize that there are many faithful readers and I am sorry for my shortcomings with my blogs, but lately there has been little downtime in my life to sit and actually write. Of course no news means good news and in the first time in years in the Kujawa house life has settled down immensely!
Christmas was busy but fantastic! We went to Kelowna for a couple days prior to Christmas to spend time with my brother Meldon and family. We took advantage of the mild snowy weather and went tobogganing and tubing. Much to all of our surprise Kourtney joined us on the hills and was able to engage in these activities also! What an amazing sight seeing her squeal in delight flying down the hills ! I believe God sent out a squad of guardian angels to protect her! (what kind of parents are we?)
I worked Christmas and boxing day and the rest of my family spent time with Dave and Bev. I have not worked Christmas day since Todd and I started dating so I sucked it up and happily accepted the double time in a half pay. (it helped pay for the flat screen TV Todd bought me for Christmas;) The girls were disappointed not to have me around but were happy to know that 5 Christmas Baby's (or as Shae refers to it Baby Jesus's) were born that day.
We then celebrated New Years with Meldon and his family! We feel so blessed to have this special family so close.We even managed a shopping trip together, and everyone enjoyed themselves!
Kourtney is doing very well. In November she had an infection but we managed to "knock it out" quickly before it did too much damage! Since then her skin has been looking great.(keep in mind with the comparison of two years ago)! She is gaining weight and her hemoglobin for the last 3 months has been maintained at 112 (in comparison to 80). Kourtney gets iron infusion every 6 weeks and Epo shots every 2nd week. Dressing changes have been a breeze however time consuming and remain a two person job!
In November we met with a psychologist and psychiatrist, they both gave Kourtney and myself necessary tools to help her fight depression. In turn we took the knowledge and presented it to the teacher's at Kourtney's school. Kourtney was put on a new medication for sleep and pain as one of her biggest complaints is that she didn't feel like she was getting enough sleep at night. With this combination of understanding and medication Kourtney seems to have worked through her depression. We see her laughing a lot more, Shaelyn and Kourtney are allies and are found giggling together rather then fighting, she has worked through her friendship issues on her own and has owned her physio sessions.
Despite the progress Todd and I are faced with many meltdowns and find ourselves having to filter through normal teenage hormones and a mind and body afflicted by a disease. We try not to coddle her but on the other hand we want her to know she is being heard and understood. We walk the tight rope with her and try to be wise in the way we handle this unique age in life. She is learning that she has to own her disease, although difficult for us to watch it also it freeing for us to live this way.
We feel blessed by the people who have come into our lives to support and encourage us Angela, Jeff, Vanessa, Mona and Lorraine. We are never without love and attention from these people and enjoy having a support system.
We are looking forward to a spring getaway to Hawaii. We know it is imperative for our family to get some sunshine and spend some quality time together. Mom and Dad Kujawa are coming also which will be lovely and provide Todd and I time to spend individual time with Shaelyn snorkeling and Kourtney most likely shopping!
I realize that there are many faithful readers and I am sorry for my shortcomings with my blogs, but lately there has been little downtime in my life to sit and actually write. Of course no news means good news and in the first time in years in the Kujawa house life has settled down immensely!
Christmas was busy but fantastic! We went to Kelowna for a couple days prior to Christmas to spend time with my brother Meldon and family. We took advantage of the mild snowy weather and went tobogganing and tubing. Much to all of our surprise Kourtney joined us on the hills and was able to engage in these activities also! What an amazing sight seeing her squeal in delight flying down the hills ! I believe God sent out a squad of guardian angels to protect her! (what kind of parents are we?)
I worked Christmas and boxing day and the rest of my family spent time with Dave and Bev. I have not worked Christmas day since Todd and I started dating so I sucked it up and happily accepted the double time in a half pay. (it helped pay for the flat screen TV Todd bought me for Christmas;) The girls were disappointed not to have me around but were happy to know that 5 Christmas Baby's (or as Shae refers to it Baby Jesus's) were born that day.
We then celebrated New Years with Meldon and his family! We feel so blessed to have this special family so close.We even managed a shopping trip together, and everyone enjoyed themselves!
Kourtney is doing very well. In November she had an infection but we managed to "knock it out" quickly before it did too much damage! Since then her skin has been looking great.(keep in mind with the comparison of two years ago)! She is gaining weight and her hemoglobin for the last 3 months has been maintained at 112 (in comparison to 80). Kourtney gets iron infusion every 6 weeks and Epo shots every 2nd week. Dressing changes have been a breeze however time consuming and remain a two person job!
In November we met with a psychologist and psychiatrist, they both gave Kourtney and myself necessary tools to help her fight depression. In turn we took the knowledge and presented it to the teacher's at Kourtney's school. Kourtney was put on a new medication for sleep and pain as one of her biggest complaints is that she didn't feel like she was getting enough sleep at night. With this combination of understanding and medication Kourtney seems to have worked through her depression. We see her laughing a lot more, Shaelyn and Kourtney are allies and are found giggling together rather then fighting, she has worked through her friendship issues on her own and has owned her physio sessions.
Despite the progress Todd and I are faced with many meltdowns and find ourselves having to filter through normal teenage hormones and a mind and body afflicted by a disease. We try not to coddle her but on the other hand we want her to know she is being heard and understood. We walk the tight rope with her and try to be wise in the way we handle this unique age in life. She is learning that she has to own her disease, although difficult for us to watch it also it freeing for us to live this way.
We feel blessed by the people who have come into our lives to support and encourage us Angela, Jeff, Vanessa, Mona and Lorraine. We are never without love and attention from these people and enjoy having a support system.
We are looking forward to a spring getaway to Hawaii. We know it is imperative for our family to get some sunshine and spend some quality time together. Mom and Dad Kujawa are coming also which will be lovely and provide Todd and I time to spend individual time with Shaelyn snorkeling and Kourtney most likely shopping!
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