Finding your SCHTICK

Kourtney will be singing this Friday at a talent show at our show. Singing is what she loves to do and is so confident in her performing. Todd will be accompanying her! She is the last one to perform and like any mother I am thinking they are saving the best for the last! I am allowed to go there in my mind am I not? We will record it and post it YouTube when my techie gets it on the internet.

So how are we really doing? To tell you the truth life has been very difficult. Kourtney is struggling socially and Todd and I are up to our eyeballs in knowing how to handle this very sensitive situation. I don't think we can chalk it up just to teenage years either as you all know Kourtney's situation is so different from most typical teenagers. We continue to seek much wisdom and are handling this situation in the most delicate way possible, but it soooo EXHAUSTING!!!

Social isolation is clearly one of the outstanding features of raising a child with special needs. We have felt it at many stages in the last 13 years. Over the last 2 years though Todd, Shaelyn and myself have found our SCHTICK (gimmick, the things that help shape us). Todd's is his leading of worship and playing in the band, Shae's is her skipping and mine is my work. This has given us an out and something else to focus on. Unfortunately Kourtney has not found her schtick in life yet. No matter how much we try to give her options, we are met with a lot of resistance.

Next year Kourtney will be attending highschool with a new teacher's aide (Tammy is moving to Calgary). We are hoping and praying that she will find that one thing that she loves to do and she will stick to it. We are also praying for her to have a group of friends that she will feel comfortable with. This last year she has faced soooo much rejection from friends that it really makes my heart break. I can't say it is just one-sided as Kourtney is very sensitive and speaks her mind quite easily, and just ends up alienating herself. Kourtney is also very depressed, which makes her withdraw even further. As a result she does not actively participate in what is going on around her. She wants people to be a part of her world but has a difficult time opening herself to new people and new activities in her life.

So yep! Life is rough, but great all in the same sentence. I recently weaned myself off of my antidepressant due to unwanted side effects and with the hope that the coping mechanisms I have practiced  over the last few years are mightier than the meds. So far it has been going well.  I find I am a bit more energetic and can get myself out of bed for a run in the morning! I am a lot more emotional and feel the tears fall easier. After watching the following video I have a feeling that the your tears will fall easier.

Giggles

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.

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!

Way Too Long!!

I have to apologize for not keeping my blog updated. There is no excuse and it doesn't mean that we haven't had exciting events in our lives. It is really difficult to know where to begin when I haven't blogged for so long but I might as well start with our butterfly teenager princess Kourtney!!

Kourtney

On September 20th, Kourtney became a teenager! She celebrated with 10 friends at Boston Pizza and then our house for a movie and a birthday cake. Unfortunately after that day life went downhill for her. She went to Children's Hospital for an iron infusion; 4 pokes for an IV and no success! We both ended up in tears and I honestly think the poor doctor was going to sign me up for the loonie bin. You have to understand that being on an antidepressant has suppressed my emotions (especially the tears), so when I do cry the heavens open and the tears are like Niagara Falls (it actually feels kind of good when it happens as it is such a release for me). Enough about me...back to Kourtney!!

After that ordeal Kourtney was not quite herself. She was sinking back into her depression. Her adjustment to grade 8 was rough as she dealt with her labile emotions and the labile emotions of every other teenage girl in her class. There were many mom and daughter pep talks during that time and my heart ached for her. She ended up getting a cold that played havoc on her skin and I became worried that without necessary iron in her body that she could get sick again. I booked another iron appointment but cancelled to go be with my family in Saskatchewan (my dad had a heart attack and was needing bypass surgery ( I will share more later).

I was in Saskatchewan for 5 days and came home to a dejected 13 year old girl; her cold still lingering and her skin breaking down. We ended up getting in fast for an iron infusion and committed the IV to God. We prayed that the right nurse would be given to us and the IV would go in on the first try, and it did. Kourtney cried tears of joy when the nurse smiled at her and said, "It is in." We had other nurses peering through the window that all cheered when I gave them the thumbs up.

After that obstacle Kourtney became perkier but her labile emotions were starting to wear on our whole family. The bottom line seemed to be that she was sore in the morning, her stooped posture, her lack of use of her thumbs despite the surgery in June = a very big depression. I spoke to Dr. Courtemanche about arranging a multi-disciplinary meeting and he willing obliged and began to gather his "peeps" together. On November 8th we had a meeting with psychiatrist, anaesthetist (from the pain team), Dr. C., hematologist, our dermatology nurse, OT, PT , Todd, Kourtney and myself. We all put our heads together for the best plan to deal with Kourtney's joint issues and her looming mood. There was a lot accomplished in the one hour including the possibility of Kourtney receiving a myoelectric arm (research to follow). We were so thankful for this hope as it would give her Independence beyond what any of could ever imagine including taking herself to the bathroom and being the life of the party being able to crush pop cans with her forceful grip. We haven't started the process of funding yet but I believe once we wrap our heads around this it won't take long for this process to start.

So since this fateful day Kourtney seems to have a better outlook on her life. She didn't want to keep having surgeries just to face disappointments. Although the emotional outbursts still are regular we all have a better perspective on how to face them. Her pain control is better and surprisingly she doesn't come home from school worn out. She has a smile on her face and has ambition to keep herself occupied when she gets home.

Todd

Shortly after I returned from Saskathewan, Todd woke up complaining of pain. Janelle instantly recognized it as kidney stones. That morning became our first of many visits to the ER. We realized that our medical system is only designed to treat the symptoms but not deal with the problem. I was so very unimpressed with our local hospital and felt somewhat dismal knowing that I was a representative of that hospital. To date he passed 2 small stones and one large peppercorn sized one that had to be "surgically removed" and is now waiting for a lithotripsy to be done on the other offending stone.

Through all this Todd still has lead the Alpha Band at church, plays in the church band and still remains positive.

Shaelyn

I have to give this little trooper a lot of credit for putting up with all of this. I think her name should have been Endearment. Somehow Shaelyn seems to get through during these troubled times. She generally has our day organized from the time she rolls out of bed in the morning, by asking us, "What are we doing today? - which means, "What am I doing and I won't stop asking you until you give me a concrete answer." Grade 4 has now brought projects, and letter grades. Shae has taken this on and really enjoys these challenges. She continues to do her skipping and is doing very well at speed skipping (which doesn't surprise any of us).

Jennifer and Lexi

Our cat and dog had a bit of an altercation. Lexi tries to dominate Jennifer by a term that we call "humping". This behaviour exhibits itself more when Lexi is in her heat cycle. When Lexi does this it usually ends up in friendly fire between the cat and dog. Unfortunately during one of the attacks Jenny ended up scratching Lexi's cornea of her eye causing photo phobia and pain. Lexi had to go get pain medication and drops for eyes. The poor thing has not learned her lesson and continues on her quest of domination of the cat!

ME, MYSELF and I

Surprisingly enough I have managed to stay even through these little trials of life. I felt myself going down with Kourtney somewhat but was able to keep perspective through it all. I still love my job and always I have a place where I can focus on something other then life's trials at home.

When my dad had his heart attack, I was warmed by the fact that my family wanted me there. After all the trials of the past two years, it became clear that it was truly forgotten and the past became just that, the past. I was able to spend quality time with my mom, dad, and youngest brother Murray who was also getting married that weekend I was there. I believe that I was meant to be there despite Kourtney's torrid state at home. My dad is feeling great and has a whole new outlook and perspective on life!!

We feel very blessed to have my brother Meldon and family in Kelowna. We have not had any of my family that close by and feel it is a luxury!!!

Just last week my sister Sharon came out with her two little ones. We had a wonderful time together and felt blessed to share in each other's lives.

God is not just good . . . HE is faithful. He has brought us through the desert and we feel we are reaching the promised land!!

Back to work, back to blogging.

So I have now returned to work after 5 weeks of freedom. I enjoyed every minute of my time off and now I have to get back to the real world of alarm clocks. I received a warm welcome on my return to work; hugs, and thoughtful words from many friends. At one point I got a little teary, being so overwhelmed by the many awesome people I work with.

So how are Kourtney's thumbs? There has been a bit of disappointment with them but according to the good Doctor Courtemanche, he is pleased with them. They are quite stiff right now so holding a pen is not an option for her. I think the long term goal is splinting them and maintaining the web space as good as possible. I am just thankful that I don't have to figure it out or worry about them. We'll leave it in the very capable hands of Dr C.

Our trip to Saskatchewan was a huge success. We were able to see all the people we needed: including my parents, 4 siblings and spouses, 2 nieces and 8 nephews, my 101 year old grandma, my aunt and a cousin and her family. We felt blessed to be able to with my family for a week. It was a huge let down to come home and not have 20 people over for dinner. My parents house is beautiful. I kept having to remind myself we were in Regina, it was so resort like.

Since we have been home we have had many pool parties, dinners with friends and family. We hosted a bridal shower tea party for Brittany, and went to the fireworks in Vancouver with friends.

Our summer has been packed full so far, but we are still looking forward to visits from my sister and family, a trip for two (Todd and I) to Vegas to celebrate being 40 and also our 14th anniversary. Also my brother has moved to Kelowna so we will go do a housewarming visit.

I felt very teary today, we have so much to be thankful for and are amazed at the God-given energy that channels through our lives. Our lives are so full, not due to what we have, but what has been taken away. We live for the day and try not to worry about tomorrow.

Having said that . . . 40 has hit with some news that I am getting older high cholesterol, high blood sugar levels and a sore body. I have taken some action by seeing a dietician and have undertaken measures to try to keep my body healthy. My nice little antidepressant pill has increased my appetite and I am reaping the benefits of a 15 pound weight gain (ARGH). My friend Carla inspired me on my birthday not to let myself go and I have heeded her advice. Yep even doing yoga 3-4 times a week still isn't good enough it is what I am putting into my mouth that is the problem. Just a little frustrating as I really do have a love affair with food.

So once again I am putting myself out there, making myself vulnerable to everyone to let every one know Janelle is taking charge of her life (once again). I want 40 to be appealing not appalling.