Christmas is packed away!

Just spent the entire morning packing up Christmas 2012! When I put away decorations I take time to reflect of the events of Christmas. Although there are no signs of Christmas left except for the few stubborn pine needles that keep appearing, the memories of this one will be embedded in my memory forever! From my other posts there you know there was unrest in our home. It felt like we were shivering and nothing could stop the rigor. But once we got to Kelowna and heard the kids laughing and saw them being spoiled by their grandparents, being with family was like a warm blanket put over our family and gave us the much needed emotional rest that we craved. Our plans for one night in Kelowna turned into two as we could not pry our kids away from the bond that cousins share! We came back to Abbotsford from Kelowna on Christmas and shared a wonderful Chinese dinner with my parents as well as Todd's mom and dad. On Christmas day, my mom took charge in the kitchen and made an amazing turkey dinner! My brother and family joined us from Kelowna and when they arrived our house was instantly turned into the party house. From Sunday to Thursday there was never a dull moment, as my 75 year old dad became chief party planner extraordinaire and there was not a down moment. My mom and dad even did some dancing!

The continual partying between Christmas and New Years were traditions that I was accustomed to growing up. Over the years, the loneliness that I have felt over Christmas has been minimized by working, and being with fellow co-workers. My children knew nothing different and had become accustomed to the quiet Christmas. I am starting to think that this Christmas has left a pretty sweet taste in their mouth as to what Christmas was like for me growing up.

Meldon and his family left yesterday, but thankfully my parents are still here until January 5th, or else it would be very empty around here. However, my girls are already in mourning with the thoughts of their grandparents leaving, and the pressure of moving still weighs very heavily on us. Both of our girls are very aware of how lonely they are, and how much they miss being around their cousins. However, having my brother and family in Kelowna has been the best for all of us. A month ago we were unsure if they were going to be staying there, but it now is confirmed that they will stay there for awhile. As long as they are close, I have a feeling we will be staying put!

Kourtney has done extremely well; being busy is the best thing for her, however, she was so exhausted tonight that she said, "I just want to have a down day with Grandma Charlene and watch Anne of Green Gables." I think she deserves that. My dad, Todd, Shae and myself will go tubing tomorrow. Looking forward to it!

Jingles = Shingles

Since our trip in to Children's and the long awaited iron infusion, the red blood cells are starting to be produced and Kourtney's skin is doing something it hasn't done for a long time . . . heal. Also, her monthly skin swabs have been negative for the MRSA. I still have a hard time believing this as we thought it would be around for ever. I also have come up with a new concoction of creams and dressings that seems to provide a balance with healing, itchiness, as well as having the dressings not stick to the wound. We saw Dr. Courtemanche today. He seemed to approve of our concoction and was more than happy to look after Kourtney's ongoing needs.  He was more than pleased with the way Kourtney was looking and admired his "work of art" on her mouth and was his usual pleasant self.  However, he was quite concerned about me and told me he didn't think I was doing ok, and to tell you the truth, I have been barely holding myself together.

I have been fighting a very strange virus for about 2 weeks now. Extreme muscle pain, muscle pain leaves and a very runny nose starts, then a cold sore, just when I started to feel better I woke up with a painful, swollen neck and little painful sores all over my scalp. I have shingles. I need rest, but yet as all mom's know there is no rest for the wicked or the weary (I have been told it could go either way). I always thought that when the girls would get to be older they would be less needy. Quite the opposite! I think emotionally they have become more needy and dependant on me to assure them that they are ok. Kourtney has not been sleeping well at all and earned herself a trip to the pshychiatrist today (either me or her, she could get in sooner then I). We have increased her Elavil and the pshychiarist has given me the freedom to increase it incrementally until we have found the sweet dreams without a hangover!

As well the Christmas holidays started out with what the T. Kujawa's do best, renovate. Todd started to patch walls and painted the girls rooms. Kourtney has the teenager room (pink and grey) and Shaelyn a very, very bright green.  When the rooms are decorated there will be pictures to follow. The attribute that I love about Todd the most is also what I resent about him as well. Once he starts a project, there is no stopping until the job is done. While this is great for project completion it leaves me as a single parent trying to referee the spats between the girls, dressing changes, trips to Children's, Christmas shopping, and trying to get ready for Christmas.

Shaelyn and Jennifer

Which brings me to today. We will be packing our van and heading to Kelowna to meet up with my brother and his family, and to see my parents. We will stay overnight and then bring my parents back to Abbotsford where my brother and his family will join us for Christmas. The girls are so excited to see their grandparents and their cousins, and are excited about the ongoing party the next week with family around. I actually feel once my parents are here I can finally get some rest. It's not like they can help with Kourtney's dressings, but they do meet an emotional need for all of us, just by their presence. (I feel that the older I get the more needier I become!) My dad loves to go swimming, or to Castle Fun Park. My mom loves to bake buns and watch movies with Kourtney. So tomorrow morning when the van is packed I feel I will be able to let out a big sigh of relief knowing that my parents are going to be around.

MERRY CHRISTMAS!!!

Long day

We left at 6 this am, and arrived at children's at 740 for our 8 am appointment! I had a sick feeling that this appointment was not going to happen despite the confirmation with the receptionist! 14 years of this I have developed a huge mistrust in our system! When We arrived we got the news that we were cancelled! Christlike was not my first reaction  with this news as we endured a very rough night with anxiety as well me fighting a cold and not be able to breathe!! However a very kindhearted nurse assured us that they would make it work for us, however there was no anesthesiologist to start her IV ini her tender skin! The last time we came in it took the nurses in 4 turns,with no success and a very bruised a blistered child! All I could think of was the song Some trust in chariots but we trust in the name of the lord of our God, this reassurance was transferred to kourtney and I was able to give her that promise that many people were praying The warm nurse came into the room, and I could tell she was up to the challenge! I felt confident in her skills, and after a look at kourtneys limited IV access spots she felt confident that she could get the vein! It took a little while but and all I could do was pray as the nurse wasn't sure if was in or not! But the we saw the most precious site, the much needed blood pouring back! Thank you jesus! Kourtney is now hooked up to a solution that Mimics hormones secreted at night that stimulate growth hormone! They will be able to decided weather or not this is a reason her growth is so delayed! She is the size of an eight year old! If they find out that this is the cause then she get the hormone and this will bring on puberty! ( oh my ) This will really help her socially if she is an appropriate size! As well she will receive IV iron which she has been receiving for years for severe anemia issues! Unfortunately though she has not received it for 3 months due to IV issues! So this will aide in her overall well being correcting all of this! Hopefully this is a turnaround day for her as her mood as been low especially with the anticipation of all of this!

Looking up!

Long day, but worthwhile. I worked nights, Todd and Kourtney picked me up at 715 for our two hour trip into Children's. We were of course late for our 9 am endocrinology appointment. Dr. Stewart was able to give us some possible causes why Kourtney's growth has been stunted. Of course this means more bloodwork, and even an IV test to determine if Kourtney is a candidate for the growth hormone.

Kourtney was perky today, and seemed that those deep rooted coping skills have come to the surface once again. She made us laugh out loud today. It was fun to see her so much lighter today.

The visit to the psychologist  brought a whole new perspective to her really low feelings.  One of the biggest issues identified was her insomnia issues which will be handled by a psychiatrist.   The psychologist will also be phoning the school to recommend how Kourtney's schedule can be more accommodating.  The friendship issues will probably go on.   Who really loved highschool??  We are so thankful that her caregiver Kimmy is such a positive role model in her life; committed to Kourtney and genuinely loves her.

There are so many things in life we have to be thankful for, however, there are times that the volcano needs to erupt and I think that is what happened last week.  I think today we are back to just simmering. There are changes being made but at this point we are still really weighing our options.
There are 2 families I know for sure that are reading this blog, and I want to encourage them - you know who you are.  I know that this blog is difficult for you to read, however,  sometimes all the cards need to be laid out on the table. I don't think anyone can imagine the intensity living with EB can bring to a family as a whole, and at times it is OK to say, " I can't do this anymore."  We have taught Kourtney that she doesn't have to suck it up all the time, and pretend that life is fine.  That is why we have the blog, because it reminds people of the 24/7 of this disease and how it can become all consuming.  I want to encourage you too; look after yourself, mentally, physically, make sure you see Dr. Bennett at Children's sooner than later because she is great! But most of all keep communicating with other families with EB. That was not a luxury we had and now there are 3 of us all within 1 hour of each other. Going through this journey together is invaluable! We can all be survivors together and support each other.

The Downhill Spiral

There is not much more that I can say, however, we covet your prayers. Kourtney came unglued at school the other day and now we are reaping the repercussions with insomnia and more and more skin breakdown. We are seeking help from the psychologist at Children's. Todd and I are weary as we travel this road - alone and afraid that Kourtney has given up her will to live. School reinforces how different she is and how she is excluded from her peers. The youth group she attends reminds her that her friendships are limited and is very left out from any social interactions.  For heavens sake she can't be on the music team because she did not know you had to try out for them.  Her so called friends tell her to text her and when she does it's instant rejection; "I am busy". "We have to hang out soon"!  Kourtney feels stupid for texting as not once has anyone allowed Kourtney "into their circle"! I can always look on the bright side and be thankful she is not part of the party group, however, when there has been no social interaction for months it becomes very difficult to take! We have been going to the same church for years, but every time we go somebody asks us about Kourtney's hands and then we are left explaining the disease (starts affecting our worship)! We miss our McKnight friends who gave us nothing but unconditional love, and Tammy who loved Kourtney as her own. This is why the psychologist feels that moving to Sask. would be beneficial to our family! Would the snow be whiter on the other side? I am not sure, however, the agony of watching little Kourtney in the depths of despair is not something we as parents could watch much longer! We have a trip to Children's planned for Nov. 22.  We will be seeing endocrinology to see if there are any answers to Kourtneys stunted growth. As well, the psychologist is planning an intervention for Kourtney. We once again ask for prayers; we are depleted!

Changes are Coming!

It has been the longest 4 months for me and I don't know where to begin. I haven't blogged in a long time because there is so much going on that I even know how to express it all. Our lives have become overwhelming to say the least, and  have to make some very big changes in order for our lives to continue spinning out of control.
I fell apart a couple of weeks ago, after one of the worst shifts I had at work. It was the most difficult test of endurance, I faced, and walked away feeling I had to suck it up and handle it. It wasn't until a few days later that one of our charge nurses phoned me at home, that I realized that I was in trouble and sought medical help. The week progressed and ended with a trip to children's hospital, which really made me take a big step back, and say "whoa things need to change". Please understand, that what I am about to say is not meant to be a guilt trip on anyone. I understand that people's lives are full, however, this road is very lonely, and for that changes need to be made.
Since about June, Kourtney's skin has broken down severely on her back , bilateral shoulders and upper arms, it is once again the nasty MRSA that is playing havoc with skin. Once again the "oldfaithful" dressings were not doing the job, and hi ho hi ho, it back to Children's Hospital WE GO and GO and GO. AS a result of this nasty infiltrating bug on her skin her hemoglobin took a huge plunge and started us on the hamster wheel that we became so accustomed to 3 years ago. The problem is however, that nobody (except DR Davis), seemed to care that this was going on. No matter how many times I complained, nothing was done. I took her to the dermatoligst, she ordered a 30 gram tube of antibiotic ointment, and sent us on her way. (the wounds are so big that this tube lasted us hmmm 3 dressing changes, thanks for your help.
In October, and 4th round of antibiotics I finally got Kourtney to page the plastic surgeon and talk to him herself, that is when we finally got some action-a new dressing- which amazingly enough it worked! However 5 weeks later we still have to beg, borrow, steal it from different deparments at the hospital, which I figure is annoying but watching your child in excruciating pain happens to trumpi the annoying part of this. (Abbotsford sells it for 10dollars a pop for a 2X2 peice- when you are trying to cover areas the size of North and South America on a map- dressing changes are as expensive as a new lulu lemon)

This back and forth to Children's is getting a bit too much, as now Kourtney is in high school, and missing a day is like missing a week of school, so on top of the 2 hour commute to children's ( both ways) dumpster diving for dressings, dressing changes, trying to manage my home, working, I have now spent countless evenings helping Kourtney with homework-especially social studies!  However the butter cream icing on the cake,came last Friday.

Kourtney went in for an iron infusion. We left at 0830 got there at 1030, and were supposed to have an anesthesiologist start her IV. There was a trauma that just came so no one was available, for 1, 2, 3 and 4 hours. We had one nurse who came in and gave it not one but 3 tries and left Kourtney's arms, black, blue and very blistered. Why didn't I stop her, um well, I don't know! After a doctor came and poked her for the 4th time, Kourtney was done, and I made it very clear that there wasn't going to be a 5th. Frustrating. We had an appointment with the psychologist that same day, and asked some very pointed questions and felt Kourtney's care needed to be closer to home, she also questioned why we wouldn't move to Saskatchewan where her cousins were. Shaelyn already asks me everyday why we can't be closer to cousins and to tell you the truth I am beginning to wonder that myself.

Kourtney and I came home at 5, dressings were changed, dinner eaten at 730 and to bed we went bed. Wow what a great life we lead!

Before the iron fiasco we were planning on having a multidisciplinary meeting ( 7 doctors and 3 therapists showed up for a round table discussion on Kourtney's care).Speaks volumes however that her primary care provided was a no show because he was waiting for a phone call. The bottom line is that Kourtney's care needs to be closer to home, her iron infusions will be handled at the Abbotsford Hospital from now on and we will take her to a pediatrician on a regular basis that will monitor her. I am thinking there will be a lot of education for the staff, but if it saves 4 hour commutes, I think the trade off may be welcomed.

We still however need to do what is best for our family. Since our Saskatchewan visit in July our girls and myself for that matter, still have a very difficult time to being back in Abbotsford. Kourtney has few friends, who are swallowed up by extracurricular activites that Kourtney does  not have a lot  of energy for. Shaelyn's adjustment to her new school has been better then expected, however, play dates are non existance as the commute between Maple Ridge and Abbotsford is too much.
Todd enjoys  his job,  and enjoys leading worship at church. I still love my job and work with some amazing people that are truely the best friend :)  I have ever met, however, it is very difficult to come home to my very sad, and truely in every sense of the word - lonely girls. So ya! What do we do with that. I do beleive that if  God wants us to move that it will become increasingly clear, it would not be a huge benefit to Todd and myself socially, financially or physically ( the snow), but if our girls would reap the benefits of having 9 cousins, 3 aunts, 3 uncles and grandma and grandpa, the benefits would nee d to be weighed.

 We start with small baby steps, the closer to home approach, we will go from there.

Happy 14th.

I hear so many times, "I can't believe that Kourtney is going to be 14! Where has the time gone?" Well for me 14 years has not flown by and I can tell exactly where the time has gone since September 20th 1997. The second you came  came flying out onto the bed, I saw the Lutzer chin of determination and the wise eyes of a Kujawa. Kourtney, your entrance into the world has taken me into a world that I never knew existed, I have become a person I had no idea I could become, and most of all Kourtney Charlene Kujawa, you made me a mom.

The moment you were placed in my arms was the proudest moment of my life. A minute later you were whisked away from me and that was the scariest moment of my life. Almost instantly I was taken back to when I was 8 years old at the breakfast table. Grandpa Harold would not let us sit at the table until we went back to our rooms to get something we needed to give to Jesus. I remember Grandpa Harold put his wallet on the cereal box that was our pretend altar. I don't remember what anyone else put on but I brought a doll and stuck it on the cereal box. The day you were born I did the same with you; I gave you back to God and  felt a sense of pride that God entrusted me with such a fragile butterfly like you. 

I remember the first time taking you to Children's Hospital, meeting with Dr. Prendeville and handing you over to the dermatology nurse, Deanna. I cried because I didn't know how to take care of you and was relieved that someone was there that could help me. About a half hour later you returned with nice clean dressings and two little marks on your arm from the biopsy. At 48 hours of age you already endured more pain than most people ever do their entire life. From that moment forward Kourt, I was determined to do anything so you wouldn't have to feel more pain than necessary.

We fought the disease for many years, and felt like we were winning in some areas and losing in many others. We spent sleepless nights trying to protect you from harming yourself, endless amounts of dressing changes, and your every awake minute being watched so you wouldn't harm yourself. What kept us going was your bubbly, happy personality. Your love for music and your funny dance moves made us realize that there was a lot more to you than your skin disease. 

I learned when you were 6 months that I had to put my boxing gloves on and walk into an arena all alone fighting bureaucracy at federal, provincial, medical, and social levels. Not one stage of your life was straightforward, and getting the help needed took endless amounts of phone calls, meetings and letter writing. I do hope we have paved the way for other families with special needs.

However, all this came with a cost, called burnout. The years of fighting, sleepless nights, dressing changes, doctors visits, took its toll on our family. All my energy was put into your needs, and I felt that the more control I had the better you would do. I felt I was being the best mom to you but through all that I was neglecting your sister, your Dad, and had a lot of anger towards many other people.

 3 years ago there was a horrific accident by a arrogant doctor resulting in an infection  that raged through your body; that is when life changed all together. Your will to live was taken away from you, and I hit a depth of despair that I could not find my way out of. I didn't have your strength to draw on to get me out and if it wasn't for 2 amazing doctors and a wonderful Dad and husband I would not be writing this today.
Since then we have rebuilt, reorganized and reinvented living with EB. We no longer are fighting the enemy but have a called a truce with it. We no longer live in fear of what may happen for the worst has happened - we lost control of the disease. Living in fear of what may happen however is actually worse than living it - and for that there is now freedom in living with this unrelenting disease.
Kourtney your 14 years in this world has taught me to embrace every day and live. I have had to put my own pious insecurities behind me when I see you facing the world and all its obstacles with strength and courage.What we deal with now is a normal functioning teenager, who challenges everything we say and do and has regular meltdowns.We embrace it because  your are acting very normal. We take every day as it comes, every dressing change, and for that matter, every blister.
 Kourtney we were so thrilled to see you go away this weekend with your peers and it gave us Peace that your independance is growing. You are wise beyond your years and we respect you for that. We are excited to continue to watch you grow and develop into the person God wants you to be, not what I want or what your Dad wants. We know your journey has been difficult and we will always continue to be part of it or when you tell us to back off, we will do that also.
 Yep, it has been a long 14 years. If I could have changed one thing I would have enjoyed you more. I can't change the past but I can embrace the future, and am looking forward to the next 14 !

HAPPY BIRTHDAY!

AHHH MUCH BETTER

This week has been cooler and everyone seems to have settled into their school routines. Shae is happy in the morning commuting to MapleRidge with her dad. She loves her new friends and her teacher at school. So far no complaints except from me,  I miss her so much. I loved having her so close to me, picking her up for lunch and taking the dog out to meet her at the end of the day. The dog is definetely confused and always looking longingly at her leash. But it makes me very happy to be assured that her emotional saftey is looked after.
Kourtney is thriving at school, enjoying everything about highschool. She is going to the gym everyday, working out on the eliptical, exercise bike and walking the track. This helps out with her whole outlook on life. Our new caregiver Kim is making  Kourtney's morning routine a very pleasant experience! I have to remember to keep perspective, right now Kourtney's quality of life is so great, I have to be careful not to focus in on the skin but focus on how well she is doing emotionally! This weekend Kourtney is going on a retreat with her school. She is going with Lorraine our caregiver, this is a momentous occasion because Todd and I are not going with her. Scarey? Not at all, we are so excited for her to be with her peers! We thank God for this oppourtunity  for her we are praying it will be very positive!
 In 3 weeks we are headed to Alberta for a family reunion! We are doing the drive through the mountains, we are excited about going and reuniting with our family.

HOT HOT HOT!

Sunday September 11th,
Summer has finally arrived in BC. Today hit a sweltering 30 degrees. Days like this make me sweat just thinking about what to do with Kourtney on days like today! Today was no different and believe me today was one of those days that I feeling yelling out to the whole world that having a special needs child is sooo isolating!

Ok before I start I do believe there were an army of amazing people that helped me out today and came to my emotional rescue, Angela, Flo, Carolyn ,Scott, Shannon and Tania. You guys were amazing today and THANK-YOU for what you did for me today. OF course Grandma Bev and Grandpa Dave were there ever supportive selves today-and for amazing grandparents we are thankful.

So today was our fall kickoff at church. It was an outdoor church at our stadium here in Abbotsford. I was  anticipating that Kourtney would not do well in the heat and hesitated bringing her but we love to go to the fall kickoffs because it is an awesome way to reconnect with people from the summer. We got there and Kourtney was instantly hot, and we knew it was not going to turn out well. We lasted for 15 minutes in the heat and went and found shade. Scott Ediger, bless his heart gave us a water bottle with a fan that Kourtney could spray herself. Thanks Scott- we will give it back to you.

After the service a picnic was planned, there was so many people I wanted to connect with! Shaelyn pushed Kourtney in her wheelchair to where I was chatting with people in the direct sun, and she was crying because she was so hot. I was so frustrated because she could have stayed in the shade, but instead she just wanted to go. Of course she did, but I wanted to stay! We cut our time short and I think many people could "sense" my frustration. This has been the story of our lives, Kourtney's needs come before ours so many times and has created social isolation for our whole family. In some ways it would have been better just to stay home, but then getting out is nice but then it just brings out the worst in all of us. 

We ended up going to the Old Spagetthi factory with Dave and Bev, and enjoyed being with them after that we had friends over for a swim and a good old game of keep away!

Done!

So today we went nowhere quickly with the school board, and we made the painful decision to move Shae from our close neighbourhood school to Todd's school in Maple Ridge! Our reason . . . very poor administration in the school.

We feel that through skipping Shaelyn will maintain friendships in Abbotsford and middle school will be a easy transition for her!

Kourtney is loving highschool so far. Quick update: her mouth has healed up fantastically everyone is pleased and she now has her invisalign braces on. The orthodontist expects Kourtney to have straight teeth in 6 months.

A Sleeping Mama Bear Just Woke Up.

So have to say the start to school has been shakey. This time though it has nothing to do with Kourtney though. She actually is more then well taken care of at school, thanks to Desiree, Jenny and her new grade 12 guardian angel Christa! Her transition to highschool has been very easy, and the best part I haven't even stepped into the school - yet!

Before I get into the the situation at hand I need to preface this with how for so many years I spent days at the beginning of the school year, training teacher's aides, educating staff and even figuring out where I would pick Kourtney up from at school. I spent countless hours in meetings with support staff,  and principals. Shaelyn being 4 years behind Kourtney at school attended this meetings along with me and learned how to entertain herself for many hours at a time.

When Shaelyn started to school I didn't have enough energy to volunteer in the class and welcomed the alone time at home, organziaing care for Kourtney, ordering supplies and countless hours on the phone. Having Shaelyn in school has been a breeze, she is a great kid, doesn't get herself involved in the drama and even earned the citzenship award which speaks to her character. Every year she has had amazing teachers and has exceptionally well considering the lack of time I have invested into her. I have never ever really had to fight for her, however this changed yesterday and let me tell you the Sleeping MAMA Bear has woken up.

OF her 6 years of school I have never requested a teacher, or friends to be with her in the class. We have always trusted the staff at school to make wise decisions, well her grade 5 years has changed all this and I am very livid with her class placement. It is very apparent that decisions were made for the best interest of every other child in Grade 5 except my child.

I won't go into detail, because I do not want to be disparaging to the children in the class, because it is not their fault that these decisions were made. What I will say is that the principal probably has no idea that Shaelyn has a mother that knows how to get exactly what her child needs. However, going to the wall for Shaelyn will mean big changes for her also especially if our plee falls on deaf ears.
I have spoken with the principal but she will not change the class placement unless we have a "compelling enough reason" - Todd and I wrote a letter but have not heard a response. We feel Shaelyn's physical and emotional safety is a huge issue at this point so we are keeping her home until this matter is resolved. She will be going to Todd's school tomorrow as there is room at his school and has picked out a lovely teacher for her. (this is our plan B). We are still waiting to hear from the assistant superintendent to make sure we have exhausted all our options before we go ahead and change her to a different school and a different district. Once again we covet your prayers for our family.

Yesterday Kourtney started singing again. She feels a lot more freedom now that her mouth is bigger. I am once again reminded that this is why this surgery was so vital for her. We have managed to get the splint back into her mouth with some degree of success. Todd and Kourtney will go into Vancouver tomorrow to get it refitted.

Shae and I head to Calgary tomorrow after a very very exhausting week. I am looking forward to spending time alone with her. She has been a little bit stir crazy this week as witnessed by Dave and Bev last night. My mom and dad are meeting us in Calgary; I am so thankful that I will have them around to help me navigate in Calgary and look after me (my parents are so awesome at that). The next day will be busy so I am thinking I will not have much of a chance to blog.

Kourtney received an iPhone 4 this week and I have encouraged her to start VLOGGING (video blogging) I want her to start in on Monday when I leave. It would be a great way for her to express herself. So hopefully, Monday or Tuesday you will see a post from Kourtney!!

The Sun Will Come Out...tomorrow.

Last night we sat down and had a little family meeting. Todd and I were absolutely wrecked from the day's events, but Kourtney had caught her second wind. She stated that it would be a good break for all of us to go to Saskatchewan and chatted like nothing was going on. It reassured us that she wasn't traumatized by the week's events and was pretty ready to move on. However, I felt that she needed to understand that although the surgery was over there were a few things that we needed to get straight.

WE  had a heart to heart chat with her about the importance of wearing her mouth splint althoughit is so uncomfortable for her. WE had been comforted by Dr. C stating that the splint could be adjusted so it would be a bit more comfotable. But Kourtney had to understand that this was part of her healing and although it seemed unfair she had to try to comply. With crocidile tears streaming down her face we put the splint in her mouth. I adjusted it and made her clench down with her top teeth and suddenly she said, "Oh it doesn't feel that bad."

She wore the splint at night and, to our complete surprise, she had a great sleep and tolerated the splint for 10 hours! What a huge difference a great night of sleep makes for all us. We woke up to an overcast day. To tell you the truth I was so thankful for the dreary weather because I had so much to get caught up on. I paid bills, submitted receipts and rearranged furniture. (I tell you, changing furniture around is way more effective than antidepressants.) I have to say it was the first time in a long time that I wasn't paralyzed by fear. We all felt lighter today in spite of this awful July weather.

My cousin Leanne and I went to hot yoga; it felt so awesome to go back and stretch my sore muscles and sweat my sorrows out. My cousin Leanne is a nice calming influence in my life, so it was nice to go "practice with her." I felt so refreshed.

The girls went out on a field trip with our caregiver Jeff.  Take a look at the video.

WARNING DON"T LET YOUR CAREGIVER EVER TRY THIS ON YOUR CHILDREN AT HOME - FOR TRAINED PROFESSIONALS ONLY.

SERIOUSLY!!!

Tonight I am tired, dejected and plain worn out. WE were on the road at 0630 for a visit to the OT and then for an iron infusion. I was dreading the infusion as I knew there weren't very many available IV sites on Kourtney's already tender, bruised arms.
Why do we put her through the torture of an iron infusion? Iron is foundational in bringing oxygen to the tissues to bring healing her blistered skin. This is the only way we can break the cycle of infection and blistering. I believe that is why her skin has done well over the last year. So as miserable it is to poke her it is critical to her wellness.

I have to be careful here, but I sometimes feel that I have to learn to pray differently. My prayer today was that the IV would go easily and it . . . didn't. Sometimes I feel that the God above doesn't listen to my prayer for my daughter. The 3rd attempt was a crap shoot by the anesthesiologist who actually had already retracted the needle to take it out, just happened to adjust the cathlon and the blood came. I guess I have to be thankful for that third attempt but REALLY GOD??? How can you let this happen, especially to someone who hurts so much already?

I then looked in Kourtney's mouth and was frozen by what I saw. The parts of her mouth that had been operated on were starting to heal to their original position. I almost threw up when I saw it. It has been only 2 days that the "thing" has been out of her mouth and already it is closing back up. I was too numb to cry, too numb, too tired to call a doctor and too frustrated to pray. Why God does this happen to my baby?

Todd had to come out and switch places with me as I had totally mixed up the days for one of my appointments - and no chance to reschedule before I leave on Monday. So when Todd did the car swap at Safeway, I told him about her mouth and told him to page Dr C. Todd called Dr. C and fortunately due to my pack rat skills I saved the "thing" from Kourtney's mouth, and fortunately for Todd he decided to toss them this morning and knew what garbage they were in! He advised us to put that back in her mouth until he could talk to one of the doctors. Ya, once again nothing new or different is easy on Kourtney and she cried her heart out, when we put the "thing" back in. We tried to explain to her it is only temporary yet it doesn't ease her broken spirit as she begged to get it out.

At what point do you say enough is enough? All these surgeries, iron infusion are not life and death, but quality of life issues. It is the tough question to ask and really I am not looking for an answer because down deep I know that this is race I must run with Kourtney. It becomes all about perseverance and endurance, not finishing and not winning.  (I guess I just answered my own question) - yet it doesn't take the deep heart pain away that Todd and I both feel as parents.

Right now I am weak, and have this ache down to my toes. In a month this will become a distant memory and we will move on to new challenges. There is nothing more that the doctors could have done and I don't blame them. If God can move mountains, could He not just touch down and move Kourtney's mouth and teeth to place where they need to be?

DAY 5!

So Tuesday we made a trip into Children's Hospital to get the "thing" out of her mouth and then get Kourtney fitted for her braces. We decided to make a family day out of it and head to Stanley Park. My cousin Leanne and Shae joined us.

We did an early morning dressing change that didn't go so well, and was I ever in a mood. We got a late start for our 1030 appointment only to realize that Todd forgot all the dressing supplies and pain medication. We had not hit the highway yet so we turned around to get this very important stuff. 

My cousin Leanne helped keep things light on the way in and to our surprise it took only 1 hour to get in (that never ever happens that time of day). On the way Todd told me I needed to page one of the doctors from the pain team because she said she wanted to stop by and see Kourtney. I told Todd and my cousin, "I am not sure why she wants me to do this because she is going to tell me how busy she was - it happens all the time." Sure enough paged her and I got, "I am really busy." My response was, "Yep I know I am just doing what you asked." After that, holding back the tears I told Dr. Courtemanche that I don't quite "get her".  He gave me the nice pat answer that I expected and then went to the task at hand.

So the "thing" in Kourt's mouth didn't pop out like it was supposed to so after many tools and and a few screams on Kourtney's part it did pop out successfuly. Keep in mind that what looks like a success to the Doctor's doesn't look great at all to the untrained eye. Her mouth looks very sore, her face is swollen and there are scabs and the corners of the mouth. It rips my heart out when I see my child so inflicted with this disease but also helps to know that we have such an encouraging kind Doctor that always makes us feel good when we leave that place. Then, in walks Dr. Lauder (the pain doctor) I guess the guilt was enough for her to make some time for Kourtney . The long and short of the conversation was that she was going to get an iron infusion on Thursday and Dr. Lauder agreed in her non-committal way to put Kourtney's IV in. A long trip into Children's again, but I think worth it to allow her to heal.

Off to Stanley park for Fish and Chips! It was a cloudy day, which just seemed to make my mood even more gray.

Then we maneuvered through the streets of Vancouver to get to Dr. Loo's office. They were all so happy when Kourtney came because the molds for her mouth worked so well! Although she will need more molds, ( in a year or so) Dr. Loo is trying to get a machine at Children' that will take a 3-D scan of the teeth instead of the usual impressions. She will be using Kourtney as the poster child for getting a machine like this at the hospital. Once again we were thankful for these amazing doctors in Vancouver that have such a vested interest in Kourtney.

 It was a long tiring day. Kourtney has been complaining of her back hurting (blister sore). It is in really rough shape, so we have started her on another antibiotic. I honestly think that getting an iron infusion will help so much. Her tissues need the necessary oxygen and she will be able to fight infection better (we are way overdue for an iron infusion)!

I am supposed to leave with Shae on Monday for a skipping tournament in Calgary. I am a bit nervous leaving Todd and Kourtney by themselves but I also know I need some time away from Kourtney. It may be the best thing for me to do. She has been great through all of this and has taken everything in stride. I just find it overwhelming to keep it all together and keep myself together. The break for 3 days will be nice. We will all end in Saskatchewan together. I have a lot of packing to do which is overwhelming in itself!

Until next time!

We are Home!

Last night they weaned Kourtney off the morphine and she did very well although she was very sleepy. Our goal today (Sat) was to go to our caregiver Lorraine's wedding. However, Kourtney still needed to get an iron infusion Saturday morning. We had cancelled her q6 weekly infusion knowing she would have an IV for her surgery. Unfortunately the morphine and the iron could not go at the same time. The IV held out until 1 hour before the infusion but went interstitial causing a very swollen arm. There was no way that she could handle another IV poke; we wanted to get out of there for Lorraine's wedding.

Disappointed and emotionally fragile, I honestly felt I was on the verge of an emotional breakdown. We got home 45 minutes before the wedding started, I hadn't showered in 2 days and  Kourtney's dressings needed to be done. After the dressing change she was so drowsy I didn't think she would make it to the wedding reception. She was also concerned with the way she looked, although she hasn't peeked, and I was worried about the stares she would get. The plan was that Shae and I would go to the reception and Kourtney would come later with Todd just to see Lorraine. Tonight though, something very unexpected and beautiful happened. I'll get to it in a moment.

Last week I sat in our "center court" service at church. Our pastor prayed for Kourtney and I cried through most of the service. Only one lady other than my mom in law came and sat and talked to me. The service was full of people that Kourtney and I both knew (I am sorry if you are one of them but you've got to understand how much it hurt). Not one person came and talked to Kourtney and I after the service, not one person sitting in that service sent a email or facebook message, not one person remotely showed that they cared. I even saw one person walk a big circle around us so she didn't have to say anything. I came to the realization that its not they don't care, but that they don't know how to care. It was a  realization that came over me like salt on an open wound . . . it hurt more then anyone could imagine. JUST SAYING!! 

With that awkward and uncomfortable moment in my head I wondered how Kourtney could go to Lorraine's wedding with a scabby mouth propped open,  a swollen face and constant drool in her mouth.

At the reception we got seated with Lorraine's biological mom and 2 step brothers and sisters. Knowing some of Lorraine's history, I knew that they were somewhat estranged by Lorraine's family. Lorraine had  been able to look past all the "wrongs" committed in the past and has a genuine love for her family sitting at the table with us. They had met Kourtney before and were so looking forward to seeing her at the wedding. Lorraine's mom even cried when she found out Kourtney may not be at the wedding. Allison and Carter expressed her disappointment when she saw me come without Kourtney. While we were eating, Todd came in and told Lorraine that Kourtney was in the van. Lorriane and Brett took off like a shot and so did her step brother and sister. I warned them that Kourtney looked different. None of them cared, they came to see Kourtney and genuinely cared for her. After an awkward moment Kourtney made the brave decision to enter the arena of stares and awkward silence. But that did not happen, instead she was greeted with hugs , and well wishes from people she didn't even know. How Beautiful was that! Lorraine's mom was thrilled and told me that she knew it was hard for all us but how much joy she had knowing Kourtney was there!! Wow! Can we ever learn a lesson from the brokenhearted.

After that we were blessed by a visit from the beautiful Visser family!! So much Peace came to me after that; so thankful for them!

Advice for the next time there may be someone hurting . . . try a hug, an email or Starbucks card (HEE). Don't even try to do it now because . . . well it would be a bit patronizing.  It speak volumes! Doing nothing for fear of saying or doing the wrong thing is way more hurtful, than someone who sticks their foot in their mouth!  Please read this and take action, because what Lorraine's family did for Kourtney and I today made the world of difference to us!

I have to say though that I do have great support many great friends and family! I just needed to point out that our ability to care in a church has become a disability. The place where we should feel the most love and acceptance is the place where we feel the most rejected. WHY? I don't know, but I hope to change that!  

Day 1

Kourtney had a good night last night. She is well medicated and is very peaceful despite all that is going on her little body! We have seen a dietician, and many doctors that we needed to catch up with. We will be here for at least another night and hopefully home tomorrow.

Once again I feel overwhelmed by how big this surgery was and can't wrap my head around how this is all going to play out in the long run. I just don't have a lot of Peace about it right now.

I also am missing my Shaelyn. She has made the decision not to come in in her wise little way. She says she is nervous about seeing Kourtney and then having to leave her she would just worry about her. Instead she wants to see her when she knows she isn't going to leave Kourtney and I at the hospital. For a 10 year old that is very impressive.

So where do we go from here? I am really not sure, this void I feel is pretty huge and I am wondering when it is going to go away. We are looking forward to our annual Saskatchewan trip and spending time with family. We are hoping Kourtney will be healed up enough to enjoy the trip and be able to sing - not sure, but we can sure pray and Hope.

Whew!

I am sitting in Children's hospital, on a lumpy cot that I will call my bed for the next two nights. Kourtney is stable and resting comfortably with a Morphine infusion running. Her mouth has been opened to twice the size it was and she has a mouth guard of sorts keeping her mouth open to allow for healing to occur. It is rather shocking to say the least to see her like this nothing could prepare me for what I saw today. Fortunately the mouth guard will only be worn for 5 days and hopefully the graft sites will be healed up after that. Dr. Courtemanche was very inventive along with his counterpart Dr. Fung (a periodontist) in coming up with this "stent" of sorts.

I have say that the buildup to this surgery was one of the worst we have encountered. Kourtney and I felt it the worst as we still wallow in the lingering disappointment of her hand surgery last year. In a previous blog I wrote about how Kourtney wanted straight teeth and then went to the orthodontist who gave her some hope that she could wear Invisalign braces. Of course nothing is easy with Kourtney so she would have to have surgery on her mouth before they could make impressions of her teeth so we had to got to Dr. Courtemanche for that but when he saw her teeth and the way they were touching down on her lips he became more concerned for the integrity of her skin and the braces became secondary.

The surgery date came rather quickly after our visit with Dr. Courtemanche, which gave us little time to wrap our heads around what this involved. Without going into a lot of detail we were sent into a tailspin by Dr. Loo's receptionist who gave us a very inaccurate account of what was going to be in store for Kourtney. The more she talked the more I wanted to sit, rocking back and forth with my hands over my ears repeating, "Shut up! Shut up! Shut up!" Finally after about a week of not really knowing what the surgery involved we spoke with Dr. Loo and she explained everything to us and eased our minds.

This last week there were huge meltdowns by Kourtney and . . .myself (go figure) and Todd, well . . . I will let him explain himself one day. All I can say things were pretty tense around house keeping in mind that it was the end of the school year, no caregiver, our wonderful friends moving to Ontario,  saying goodbye to Kourtney's Teacher's Aide, Tammy, (who is moving to Calgary) terrible rainy wet weather and no Lululemeon shopping sprees (did I just say that out loud?).

So after a beautiful prayer time with our friends and Dave and Bev last night I decided that I was going to take the pain I was feeling and SHARE IT WITH SOMEONE ELSE !!!! No, that would have been a 'lick my wounds' way out. Instead I decided to avail myself to someone in need. I prayed that I would find the right person to share some light with.

We left at 0530 and arrived at the hospital at 0645. It is always an ordeal to do the pre-op stuff for Kourtney. It is never straight forward and of course when a nurse meets nurse a power struggle ensues. Then the anesthetist peeled the OR nurse off the ceiling and assured them that "mom knows what she is doing". I helped the anesthetist with the IV, attaching probes her foot, and leads to her chest while the OR nurses stood back and got their hands slapped if they got a little too close or did something wrong. It was a little amusing to watch, but I was so thankful Dr. Lauder let me do all that stuff. It made it all flow so much easier. So after Kourtney went to Sleepy Land I headed to the van for a nap. I was awakened by a phone call from a Children's Hospital number after 2 hours, which made me panic.  It was the orthodontist wanting my permission to remove some permanent teeth of Kourtney's. I was glad she asked but was thankful I know nothing about teeth and allowed her to take charge. So after that instead of curling up into a ball and not talking to anyone I sat outside in a reception area wondering where my target was going to be. It didn't take me very long and I spotted a former patient of mine from the maternity ward, and due to confidentiality I won't go to any details, but I realized that was the "moment" that I was looking for! Done, my goal, was met. After that I went back to the waiting room and listened to the petty complaints of people while their little Johnny were getting tubes being put in their ears. At one point I wanted to scream at them until I saw one Dr. come out and heartlessly tell parents that their son has Krohn's disease. My heart ached for the mom so many times; I have been there!

So ya, this has been quite the day. My daughter is quite funny right now, she can't speak very well and says she was born on "pirate ship" she called me an old hag, and presses her fart button on her iPad when she wants something. She hasn't seen herself, but we are going to keep her away from all mirrors until the stent comes out.

Once again, we can't help but feeling blessed by all the prayers of our friends but also the support the medical community has given our family. Although we haven't had many prayers answered in our favour, we still trust God's hand and his heart. HE IS NOT TAME . . . BUT HE IS GOOD!

Overwhelmed!

May 1st brought some unique changes as our caregiver took a medical leave. As overwhelming as it seemed for be to become a caregiver 5 days of week to Kourtney I also really was looking forward to spending time with her. Kourtney has been great and we have been having some quality time together in the mornings.

This last month we have finally gotten some concrete answers! Answers which will mean more physio, more surgeries and more doctors appointments. It is endless but also necessary to Kourtney's mental and physical well-being.

For the last year Kourtney has been doing intense physio on her hips to try and correct her stooped posture. The physiotherapist felt that Kourtney had bone contractures and that she had taken Kourtney as far as she could take her. After a 6 month wait list, one x-ray revealed that there is nothing wrong with her hips or muscles; it has been her protective way of walking and a habit that needs to be undone. This was met with a lot of frustration for me as we have worked with her so much with seemingly no progress. But knowing there is nothing physically wrong, Kourtney has taken this challenge on. However, there are and will be many tears as she mentally works through the challenges that this devastating disease brings. I have become Jillian Michaels and feel cruel when I make her push past her emotional and physical pain and sometimes have to pull her shoulders back or put pressure on her knees to straighten them. But the satisfaction and joy that she has when she is straight is reward enough for both of us. She is so much taller and walks a lot easier when her posture is corrected.

Kourtney has a tiny mouth from all the buildup of scar tissue in her mouth. Our biannual trip to the dentist at Children's Hospital became a gong show as a new resident would see her at every visit. We would get the "talk" about flossing and all the good things that normal mouthed people need to do. Then there was the look of shock when they looked in Kourtney's mouth and the, "OHHH I understand why it is difficult to floss." EVERYTIME FOR 2 YEARS I DEALT WITH THIS. I took my plight to Dr. Courtemanche and told him I wanted to see THE Dentist not just a resident. So about a year ago we saw THE Dentist. He is an older man and asked Kourtney what she wanted him to do. She said, "I want straight teeth and I want them whiter." So with tears in his eyes this elderly man with ginormous hands cleaned her teeth, referred her to an orthodontist and gave us hope that she may be able to put invisalign braces on her.

Due to procrastination on my part I didn't make the appointment right away and then when I did there was a 6 months wait list. So Todd took Kourtney in 3 weeks ago and met a very compassionate orthodontist who seemed confident that invisalign braces would work for Kourtney! Of course though she will require surgery as her baby teeth need to be pulled and she will also need some adhesions released from her mouth (inside of her mouth has grown to her gums). While she is under anaesthesia the orthodontist will make molds of her mouth for the braces!! No wire braces for her, just soft gentle braces that won't touch the gums. Surgery is planned for this summer.

July 20th will be the day that Kourtney will get to see a doctor about a prosthetic arm! The doctor is quite excited about fitting Kourtney due to the fact that Kourtney has all her tendons and nerve function to perform the tasks for working the arm. We are praying that this works out for her as we know independence is everything.

We are terrified and excited for what this summer holds. I know my biggest fear is that we may be disappointed with the results as we continue to try to control this silly disease. Once again I have to remind myself over and over again that God knows and His timing, His Grace, and HIS UNDERSTANDING is always perfect, and with that knowledge I can rest safely in his arms.

We are also planning a trip to Saskatchewan this summer. Shaelyn is in a skipping tournament in Calgary and then we will head to Saskatchewan for a little over a week. Why Saskatchewan? Because family is what my girls eat and breathe. My parents were here for a week and then we took them to Kelowna to be with my brother; it was so difficult to say goodbye. We look forward to seeing them in 6 weeks or so!

Since our trip to Hawaii, Kourtney's skin has taken a beating. I am guessing the antibiotic we had her on was a bit too strong, dried her out a bit too much which made her itchy, causing more blisters and the cycle starts! Once again we are clearly reminded each day that we can do nothing to control this disease!

She' BACK!!

The weather this spring has been absolutely dreadful. We had snow in April which has been very unusual for us.Generally with the gloomy weather comes depression for myself and Kourtney but since our return from Hawaii the sun has been shining in our home. The witty, happy Kourtney has made her comeback.
What happened? I believe it is a combination of 3 things: meds, overall health and her taking charge of her disease. We increased one of her medications called Elavil. It is a 3 in one pill that helps with depression, pain and sleep. She tells me she is sleeping better at night, we all know what a good sleep does from ones' mental health. Kourtney's health has been very good this winter, I think she has had only one cold, and one skin infection treated with antibiotics. Her hemoglobin has remained the same at 111 for the last 6 months which in itself attributes to health! I have also noticed Kourtney doing a lot more for herself in the last few months, weather that be putting on her shoes or getting off her butt and finding the remote (you know how many times she will ask for it and that is my response).

We still deal with tears in the morning and during a dressing change but she comes out of her lament a lot quicker then she used to. IT is very exhausting for the caregivers who do her dressings and for us when we listen to it. Nothing breaks a parent's heart more then to hear their child in pain.

So all in all life is good for all us! Kourtney will see an orthopeadic surgeon for her hips and also an orthodontist to pull some teeth. These will be great visits as they will aide us in helping Kourtney with exercises.

2 weeks ago we had a transition meeting with the high school. Next year Kourtney will be entering the high school domain! She is looking forward to it!

Shaelyn and I are headed to Nelson for a skipping tournament in 2 weeks and then we are looking forward to a visit from my parents. May is going to be a busy month for us!

Self Talk

Over the years I have learned to do what I call self talk. (not to be confused with talking to yourself). I believe that this has become a coping mechanism of sorts to get me through my depressing times. For example, after we booked our trip to Hawaii I was really kicking myself that we had not booked our trip for 10 days instead of 8. I was hoping that 8 days would be enough and that we would be rested enough after our time there. Especially if you could see what we need to take with us for Kourtney. We met some acquaintances in Hawaii on our first night and they were planning on staying 2 weeks. Shoot! I wished we were staying longer. But as the time drew near the end I was able to convince myself that 8 days were perfect and we were ready to take our sunburnt and sand filled bodies and go home. I enjoyed the 8 days but convinced myself that it was adequate. We saw our acquaintances on our very last night there and they still had another week left and really there was little or no twinges of jealously left in my body. Over the week I was able to have enough conversations in my head that I was at Peace with it! But then when we came home to the rain and those feelings of "I don't even feel like I left" started entering my head and once again my little self talk began in my head.

As the old saying goes "the grass is always greener on the other side". Through my self talk I have learned to add to it greener but it probably doesn't smell quite as good because nobody sees the manure that went into getting it that way. I struggle regularly with not being able to do "normal family" things but then I am reminded that our trips to Florida, Arizona, and Hawaii are extraordinary and somehow there is a provision made annually for us to do this. I still find it difficult watching people's reactions when they see Kourtney's dressings and hands but I rejoice when Kourtney's You Tube video is so popular that they want to put advertisements on her video. I mourn when I see teenagers developing normally, but know that her disease also stops her from getting her into teenage trouble. I am envious of the people with big houses and view lots but reminded that a swimming pool can't be put in a view - I am so thankful for our yard.

This is the mindset that has gotten me through and almost daily I have to remind myself that really our lives are great. Yes, Kourtney has a cruel skin disease but that cannot stop us from living and living well. It is pure freedom to be able to "look on the bright side" and for me I don't think I have to look very far because it is sitting right here in front of me!!

So having said all of that we have plenty of things to look forward to in the months to come (skipping tournament in Nelson, weddings, a weekend getaway with Todd and I, specialist appointments, etc.) I don't dread it I have learned to embrace a busy and full life.

Aloha!!

I am sitting here in our hotel room at 6 am. Todd, Shaelyn and Bev are going snorkeling so I was up and about getting them ready. I can't fall back to sleep so I decided that I will do my most favourite thing in the world and get my thoughts out!!

So this trip has been monumental as most of our trip are but this one has been amazingly relaxing for us! We really haven't done any extracurricular activities except beach, pool and a wee little bit of shopping! But we really haven't had to as we are all very happy relaxing on the beach. I feel like the girls have "grown up" so much since our last trip here 3 years ago that we don't have to plan a lot of things to do.

Kourtney has done extremely well this week. She is such a great traveler and the jet lag doesn't seem to affect her. The ocean water has been miraculous for her skin. Her sores heal up so quickly. During this trip I have watched her transform from a depressed teenager to a relaxed, happy, witty teenager - that is my Kourtney. The daily dressing changes are going extremely well and if you notice in the picture she is starting to even stand straight. We have worked very hard on this; it is so nice to see the results. The last time we were here was probably the first time I started seeing her depressed (sitting for hours not saying anything) now she is chatty and very happy.

Shaelyn, our amphibious child, continues to amaze us with her love of water. However, on our second day at the beach she got too much sun and despite a 30 and 60 sunscreen burnt her shoulders to the point of blistering. She is now reaping the results and has a lot of flaky skin to shed. After that day it turned her off the sun and the beach for 2 days, but now she is full steam ahead. Unfortunately her underwater camera wasn't working after her first swim. She was so looking forward to taking pictures today!!

Todd and I are enjoying ourselves immensely. During my morning runs I have literally run into random people (one of our former nurses and Shaelyn's teacher). We have seen people from our church and then just people we seem to know. Todd seems to be able to steal a nap every time he lays down and enjoys going for long swims with his yellow snorkel set!

So for those thinking in your minds "it must be nice", how can they afford this trip? I need to remind you that for us to be able to go on tropical vacations is absolutely and completely necessary for our family. We almost can't afford not to make this a priority in order for us to break the redundancy with an above average stressful environment at home. Hawaii and other vacations become our happy place especially when the going gets rough at home.

As Shaelyn said it so well, I am looking forward to going home to see the dog and cat, but when I see them I will miss the Hawaii sunshine and the water. That would translate into I have had a great time but ok with going home. The girls miss Lexi very much and are excited about getting their faces licked when they get home!!

Most Embarassing Moment EVER

So, yesterday I had a surveillance colonoscopy done. It was all clear and I recovered from it quickly. Unfortunately due to the sedatives that I was given I felt I was a bit unsafe to drive into Vancouver the next day (Tuesday) for Kourtney's iron infusion. Vanessa kindly obliged to come into town with us so we left at 725 in the morning. It took 2 hours to get into town and much to my dismay the regular nurses were not around who put Kourtney's IV in. So we had to wait 2 hours for an IV nurse. A part of me thought that I should just start it myself but I could not bring myself to do it.

Kourtney was supposed to see the physio during her iron infusion and of course she showed up the same time the IV team came. GONG SHOW!! Kourtney remains on strict isolation so the IV team were gowning  gloving and masking. Yes, I did say team. We had two experienced nurses for the price of one!! I am not sure why the duo but I began feeling this was going to end up in disaster.

The short story is after the 3rd poke I finally stepped in did it myself. These other two apparently could not hit the broad side of a barn. To tell you the truth they are soooo sweet but I think they were just so nervous about hurting Kourtney that they totally overcompensated.

So after all that we settled into a funny movie and enjoyed it. Unfortunately the nurse forgot to call the Doctor to tell him we were there as I had to talk to him about a medication for Kourtney. Near the end of the infusion I reminded the nurse again and she said it would take 20 minutes for him to see us (more waiting). As the clock continued to tick away Kourtney had to go to the bathroom. I asked if she could wait (stupid question because when Kourtney has to go she has to go). So we maneuvered her and the IV to the bathroom and my words were, "Watch as soon as I get her on the toilet Dr. Davis will come in." Sure enough,  I just shut the door to the adjoining bathroom and Vanessa giggled and said, "You were right Janelle." So I got Kourtney settled on the toilet and greeted Dr. Davis and his resident. I was standing by the bathroom door as we began our conversation but I could not hear what saying as the sound coming from the bathroom was filling my ears.  It sounded like a coffee purcolator. Apparently I was the only one who heard it and began laughing uncontrollably. Unfortunately nobody else joined in my laughter. I  heard someone say that sorrow and laughter are closely related  and when you throw in the sedative from my colonoscopy hysteria ensues!! As the tears were pouring down my face and I was holding my sides, the conversation continued but I could not answer due to my hysterics. Vanessa pointed out to the Dr that it must of been the medication from the colonoscopy that caused this reaction. He left to write a prescription and the little coffee coffee purculator continued to make her little noises. She held it all in while he was in the room!
He came back in and I was much more composed although I felt really stupid we were able to talk about colonoscopies and I pray that I recovered my composure . Embarassing but I think humour sometimes is needed especially in situations like this!!

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!