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!!!