Uncommon Joy

Our trip to Children's turned out to be a disaster for the first 4 hours . . . A week before I looked at Kourtney's arms and knew finding a vein would be tough so I attempted to arrange for Kourtney's regular anesthesiologist  to be there to start her IV, however, we always get the same answer.  "I may be busy . . . not sure if I can come always, but happy to help."  It would have been nice to know, "I am too busy, there is no one else I can speak to, or even don't bother me!" I find there is an underlining tone with our health care professionals - overworked.

 When we arrived at the clinic I told the nurses right away that an anesthesiologist needs to start Kourtney's IV.  I told them I will wait as long as I have to but I would not put my daughter through the torture of having just any body trying to start her IV. It was like I was in a foreign country speaking a different language because despite expressing my concerns the IV team still comes (after a 2 hour wait) and the stressed out nurse takes one look and makes the proclamation, "No, no I can't do it."  Umm, was there really any question??  Bam! Two hours gone, then  the stressed out nurses say, "Maybe we should call  an anesthesiologist."  (Wow! I say in my head, what a novel idea. I thought of that more than 2 hours ago.)  I maintain my cool everytime I go there because it is not worth while getting upset. Maybe it is because I understand nurses, and their dire need to follow protocol rather than consider the whole patient picture. Anticipating a long wait we did manage to schedule an appointment with the pshchologist and had a very rewarding talk about the new issues that I will mention below.

 When the anesthesiologist finally arrived, after a 4 hour wait, the staff trip all over him and thank him over and over again for "making time for Kourtney".  I want to throw up by now as I know that  anesthesiologist put the special in specialist. Some of them have a bit of a God complex. However everytime this has happened in the past their "inconvenienced look is reduced to one of sheer compassion when they look at Kourtney's skin and what they are up against. In the last 4 years we have been going to children's hospital I don't think we have had the same anesthesiologist start her IV other then Dr. Lauder, although Kourtney's name is becoming more well known in certain circles. I don't think anyone understands the reality until they actually see her. The anesthesiologist arrived at the conclusion that nobody else should be touching her and we should book an anesthesiologist  everytime we come in.  Wait, where have I heard that before?  Oh yeah, I'm only a parent.

 Every time we go in the idea of a VAD is suggested.  Unfortunately with Kourtney's chronic infections as well as skin breakdown, we feel that her twice a year blood transfusions are not worth the risks associated with VAD). I feel like a broken record and state my case over and over again.

In the end Kourtney got her blood and feels so much better. She also had an MRI done to see if she had a buildup of Iron in her. Thanks to a handsome male nurse - who talked her into facing her fear of claustrophobia, she showed how brave, or how much of a normal teenager she is :)!!

The day before we went to Childrens' hospital visit we found out that Kourtney's teacher's aide has decided not to come back to work with Kourtney in the fall.  And the morning we left for the hospital we found out our caregiver Kim has decided to move on and go back to school. So this was weighing heavily on our minds. Fortunately, in my proactive approach, we had the psychologist come and talk with us and give us valuable suggestions in how we could proceed with Kourtney's education.

Of course this all happens just before the "big weekend" for Kourtney as well as for our family. The following video will be aired in church.  Todd and Kourtney will also be on the worship team and Kourtney will be singing a solo at the end of the service. I believe the message of Uncommon Joy is going to speak to many people so it is only natural that we are going to feel the attack on our lives! I just didn't really think it would have been three big blows at once. I am handling it better then expected. There were tears, however, I feel with the reprieve we have had from crisis that I am able to face this better. Plus I know that God will provide the right people . . . I just have to trust HIM!

Update

So my 30 day challenge continues to get me out of bed at 5 to go for a prework run. When I am not working I have been running and biking.  What I find the most rewarding is how Todd has come on board with me as well and has seen great results. I am a little sick of smoothies, however I have been sticking to an eating plan that has obvious rewards.
Yesterday, my bubble burst.........life for the Kujawa's has been turned upside down. We are headed to BCCH for a transfusion today, MRI......and a talk with the psychologist, believe me we need it. Will share more when I feel we can bring some resolve to what we are facing.

Did I marry someone like my dad???

I heard a Chuck Swindoll broadcast a few years back and it said that the most important relationship that a woman can have on earth is the relationship with her dad.  This has stuck in my mind over and over again as Todd and I raise our two beautiful daughters. I know a blog on fathers day would have been so much more appropriate, the problem is we had such a amazing full day celebrating fatherhood that I didn't have anytime to blog.  I worked last night and have only slept 2 hours, so what better way to attempt to unwind!

I am certain if you were to meet my dad you would walk away with the biggest smile! My dad can make anyone around him feel special. He loves talking to people, whether it be standing in line in a grocery store, picking grandchildren up from school or most recently at the skipping tournament in Moncton. My dad makes people grin! He is so warm and interested in what is going on in peoples' lives, but most of all he is concerned about peoples' lost souls and where they will spend eternity. He always feels better after walking away from his conversations with a total stranger if he knows that that person loves Jesus. My dad also loves to talk on the phone.  His greeting, " Hhaallo Ralph" has been the brunt of many Lutzer family jokes, however, it is amazing how much all 6 of us have taken on this quirkiness in many shapes and forms.

Of course there were many times where an uninhibited father did not bode very well, especially during my teenage years. As much as we made fun of him he was did not falter or change who or what he was to try and be a "cool" dad.  I was a fashionista of sorts in the 80s and remember feeling very embarrassed when my dad dropped me off at school.  He wore a hat, with a feather on it, that sat on top of his head. Of course I was convinced that everyone was looking at it! My dad was unfazed by my embarrassment and continued wearing his feathered hat.  In so many ways this was a sign of what an unshakable man he was and still is today. My younger sister Sharon reminds me that she got dropped off a block before her high school- so maybe he was somewhat shakeable, or maybe just softer.  The one thing I knew though was that my dad loved me and was proud of his (Janarie) - my nick name growing up. He was a provider and most of all he was a leader . . . which became my quest in finding my man.

Todd helping my dad on the farm (before we were married).

 
 I often hear the saying that a girl marries someone like her dad. At first glance and maybe the second and third one would agree that Todd and my dad are not alike at all. Todd would rather spend his afternoon trimming scratchy cedar trees than talking on the phone. Todd is more introverted, my father is extroverted, but the one thing I know is Todd is unshakable - just like my dad! There is no grey, just very black and white. In this society it is unheard of. I see my girls roll their eyes and groan the same way I did with my dad, as quirky, or strange they think he is. I also know that one day when they are looking for Mr. Right, the relationship that is being established now will be a measuring stick for them! Happy Fathers Day!!!!

By the way! I am still doing well with my challenge. I am managing a great eating regime and still exercising daily!

Still on track!

The rain keeps on coming......but I am feeling happier then on Friday. Although Monday and Tuesday I didn't exercise due to long days at work, and awful weather, I have managed to stay true to the smoothie plan. It makes such a difference in how I feel. Nuff said about me.

Kourtney only has 2 days left of grade 9 and Tuesday, Wednesday she will be writing her final exams.Next week at this time we will be celebrating the end of school. She has been such a diligent worker and even has planned ahead and started studying for finals for a week now I have to say I am really really proud of her. The maturity and self advocate she has displayed this semester, makes me realize she is all "growed up"!

We have made some summer plans that are a milestones in the Kujawa home. Kourtney and Shaelyn and 2 of our caregivers will be flying to Saskatchewan on their own! Todd and myself will drive out and stay at 3 Valley Gap as well as Banff (where we went on our honeymoon - 16 years ago). We are planning on taking our bikes, and looking forward to some alone time together. However, what thrills me more is that Kourtney will get an opportunity to have the apron strings cut and be in a different province and not have us around!!! She tells me she will be moving there - one day!

What is in Saskatchewan????  Family - everything to Kourtney, Shaelyn Todd and myself!!

The Pan of Cookies!

The last two days have been really rough! I am hoping the cloud in my head has to do with the clouds in the sky. I don't like feeling this way, and I know even the slightest amount of sunshine can help me through the day. I stay on course with my eating until the evening, until the chocolate chip cookie cake scent wafts through my nostrils and what starts as just a taste, turns into "what the heck if I am going to blow my diet-might as well use the stick of dynamite". The binge lasts the night - and so do the stomach cramps.

Friday, after my cookie binge, my whole family was home from school. My nice schedule that I have admittedly become selfishly accustomed to was thrown off. I should have exercised prior to the dressing change, however, it was a day to procrastinate. On the rare occasion Todd and I do the dressing change together.  Usually it is one of us and a caregiver but due to conflicting schedules we ended being "Team Kourtney". We both are experts at doing  Kourtney’s back where as the caregivers usually do bottom half. (secretly, the back is easier to do) so it caused a bit of commotion when Todd and I put on our automatic pilot and started working on her back. I graciously gave up my post on the back and went to work on Kourtney’s legs, which I apparently could not remember what I was supposed to do. Although her skin was looking good, I am not sure if it was the different perspective of doing her legs and knowing how much pain she is in that sent me into grief mode! I don't think any dressing change is easy- it depends what state of my mind  I am in.  Clearly with the gut bomb and lack of exercise I was not in a great mood. Once again I am reminded why a life of discipline is so healthy for me as well as my family! I did end up going for a walk with the dog and Shaelyn. The dog needed some exercise, and apparently so did I.

I also am dealing with other issues, that I will not get into. WE live in a fishbowl, that is all I am saying. I feel as though that we get judged easily by the people who watch from the outside of the glass. The ones swimming with us – get it!! I would have hoped that our blog would be an important tool to diminish false accusations but apparently it is not.

The other thing that is bringing sadness into our lives is my father in law Dave, fighting his battle with Parkinson's. He has been very unwell for the last 3 weeks, and does not seem to be improving. If you have a moment or know my mom in law Bev, please send some encouragement along.  It has been very difficult to watch the downhill spiral, although you know it will happen, you can not prepare yourself for how it affects your heart!! It is so difficult as well because Dave and Bev have been a huge support system for us and our biggest cheerleaders in our journey with EB. Now the tables are turned. Love you guys!!

The verse that God has given for me today is, I know the plans I have for you declares the Lord. Plans to prosper you and not to harm you, plans to give you hope and a future! Jeremiah 29:11

With that my goal for today it was a better day already.....ran and went for a bike ride. Kelly is here and is able to maintain a healthy balance for our girls.  I get to blog - ahhhh it feels so good. Going to make myself.......a smoothie :))

Day 3, 4, 5 and now 6!!

The DNA is rather evident!!!

I just finished my set of shifts at work! Sunday night Kourtney really wanted to watch a movie, as much as I wanted to stick to my regime, I can never say no to Kourtney! Monday I did do a walk, run and bike ride, so I think it may have evened out!
I have adjusted to the smoothie regime, the scale has moved down, and my clothes are starting to fit better!
Why am I really doing this? You may be thinking how selfish but I do it for my family! I have learned that when times are good, to fill my tank up as much as possible so if we hit crisis mode again I have some fuel saved up. I as well feel that doing dressing changes as well as the job I have it is so important to have a strong body so injuries don't occur. As well with my strong history of depression I feel that regular exercise and a balanced diet helps me focus better and mentally well.A life of discipline and balance is key in raising my family. Believe me when mama is happy so is everyone else.

I also believe living with EB in our home demands discipline on so many levels, daily dressing changes, hospital appointments, supply lists, medication regimes, physio, organizing caregivers...the list is endless. I   feel the more disciplined I become the easier the demands of life become a routine more than a chore.

I am off work until Monday morning so I am going to be diligent with my routine and my blogging!!

Day 2!!

I was at work today, and stuck to my regime for the most part!! I got home around 8, dinner was waiting for me, but before I ate, Todd and I went for a bike ride. I wasn't so hungry when I got home! Feeling better already, not putting extra stuff in my body!!

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!!!