Welcome 2014!

With the help of my mom and Todd my Christmas decorations are all packed away for another year. The decorator in me loves the clean slate that has been created when the Christmas items have been tucked away into Rubbermaids and stored in or outdoor shed. This time I am even more excited as Todd is putting a new colour on our walls and we have plans of changing up the furniture for our living room. The New Year is definitely my favourite time of the year. Not to sound Grinch-like, but no matter how much I try to embrace Christmas it seems like society’s expectation of a merry holiday season somehow seems to disappoint our family each year, and this one was no different. In the past few years I have been minimalistic in my Christmas decorating but this year I had the time and energy to go for the gusto. I just had a few finishing touches left for Christmas decorating when I twisted my back the wrong way and needed Todd to help me up the stairs. In my 21 years of nursing and 16 years of looking after Kourtney I have never endured back pain so severe that it incapacitated me. At first my family thought it was funny to see me crawl up the stairs and use Kourtney’s walker to get around. But it soon became obvious that momma was down for the count, and all extra duties were all on hold. For 2 weeks household duties were pushed aside, the last bit of garland and lights remained on the floor exactly where I left them. I couldn’t exercise, which made me sad because I felt I was stronger than I had ever been. A heating pad and analgesia were my best friends (sorry Angela you were trumped for awhile).

 Meanwhile Kourtney developed a blister in her esophagus, which meant sleepless nights of not being able to swallow her own saliva and having a spittoon close at her side day and night. I can’t imagine the pain or the discomfort this brings but to listen to her trying to swallow, and to empty her sputum filled cup once again made all of us heart-sick for her. The sucker punch came, however, with a cold and lingering whooping like cough that exacerbated her swallowing and sleep issues for 6 weeks.

 On top of this Todd was busy with the Christmas music program at school; planning songs, decorating and arranging the music. As most of you know, when Todd does something he does it to perfection so many of his evenings were consumed with chosing the right songs, decorations, lights, not to mention shouldering the load left by my incapacitated state, as well being up a lot through the night with Kourtney.

 We thought Shae was rolling with the punches. As my back got better I went on a cleaning spree. Shae’s room looked like a typhoon had hit it,as I picking up her laundry I realized the cat had been using her closet as a litter box. It takes a lot these days for tears to breakthrough my botox (antidepressant) emotions, but when the floodgates opened they didn’t stop. At first I was really angry with Shae for not noticing or smelling it but soon it became obvious that a messy room is also a sign of a messy mind.It was a good reminder for me that I need to check in with her more often and of course not to let the kitty sleep in her room with the door closed (we managed to clean it up and are happy to report the cat is doing her business in the litter box again).

 My parents arrival on the 23rd was greeted with great anticipation. We love having them at our house. They fit in so well and are a reminder of God’s Grace in our lives. However, again Christmas Day was filled with heartbreak for me as a momma; watching my daughter sitting with her spittoon at our Christmas dinner, unable to swallow her own saliva, nevermind partaking in the deliciousness of a turkey dinner. The day, although lovely, at my dear in-laws home and an awesome time with Todd’s sister, Leanne, and family ended up with Kourtney fracturing her right foot. We had been going into Children’s for “serial casting” in order for her contracture to be corrected. It was the first time in a year in a half that Kourtney could walk without pain. But due to an ineffective splint Kourtney’s “new gait” left her ankle bearing weight that it wasn’t used to and bam - pure pain. Kourtney being the tough child she is grinned and bared it through all of Boxing Day. On the 27th, on the advice of Kourtney’s ever-faithful Dr. Courtemanche we took her to the ER in Abbotsford and waited for 4 hours for an x-ray. Although the x-ray didn’t show any obvious fractures, the Dr. assumed her osteoporotic ankle bone had a deeper hairline fracture. After consulting with Dr. Courtemanche, the attentive ER doctor sent us home with follow up at Children’s for Monday morning and instructions for Kourtney to stay off of it.

 So now our trip to Kelowna is a bit up in the air. We are hoping Kourtney gets her ankle casted again and can weight bear so she can enjoy her most favourite thing to do in Kelowna – tubing at Big White. My brother has been gracious enough for us to have my parents stay here until we get things sorted out. As well, Uncle Wonderful is pretty determined to get Kourtney to Kelowna and help out as much as necessary – to me that is what family is all about. Although 2014 is starting out shaky I am once again reminded of how far our entire family (not just Kourtney) has come. Setting goals is kind of the thing to do at the start of a new year , however, I feel that our family is just coming out of one of the best years full of accomplishments.

 Todd has gotten back into mountain biking, has done some amazing backyard projects and recently put together the most polished school Christmas program I have ever have been to.

 Kourtney is going to school regularly, getting out of the house daily, becoming more mobile, learning to advocate for herself and looking forward to getting her L for driving
Shaelyn is doing well in school, loves the trampoline more than ever (even in the snow) and has worked diligently to perfect her front and back flips. She assisted leading her school volleyball team to become district champions, loves her skipping and most recently started skateboarding.

 And myself, until I hurt my back I was feeling the best ever emotionally and physically. I cut back in my work hours and took my kitchen back. My family has been reaping the benefits of many new recipes. Thank you Pinterest!

 The verses that have become front and center for me in 2014 are in Matthew:

 19 “Do not lay up for yourselves treasures on earth, where moth and rust destroy and where thieves break in and steal; 20 but lay up for yourselves treasures in heaven, where neither moth nor rust destroys and where thieves do not break in and steal. 21 For where your treasure is, there your heart will be also.

 Once again, life lessons are crystal clear in our family. As soon as I became semi-comfortable in life’s routine and excited about society’s Christmas expectations my back went out. I had no choice but to slow down and focus on what is important in my life – looking after my family. There is not a lot of “job satisfaction” especially when you are sleep deprived, incapacitated and raising teenagers. Kourtney’s swallowing issues and spontaneous fracture of her ankle made me so grateful for the amazing crisis-free 11 months we had with her. The “respite” was definitely welcomed. However the last 6 weeks of being “uncomfortable “ in life is once again when we have no choice but to turn to God and know that we serve a great and sovereign God. As much as we think we are in control we are not. It is so easy to forget that our strength only comes from a God that provides for our every need. So as we welcome 2014 our family strives to store our treasures in heaven!

 PS. We saw Dr Coutermanche, and Kourtney’s Occupational Therapist yesterday (two specialists together during the holidays is very AMAZING). They casted Kourtney’s foot and it feels much better. We made it to Kelowna to celebrate New Years with, my parents, Uncle Wonderful and his family.

The Kujawa Christmas Tree 2013

EB awareness week.

EB awareness week. I missed it. In order to redeem myself I would like to write from the heart, my greatest goal for creating awareness is by creating unawareness.Confused? Let me explain. What I want people to know is the teenager girl beyond the blisters. One of the most difficult aspects of the disease,are not only public outings with Kourtney but people (friends and acquaintances) who can't see past the disease. The stares, the pity the assumptions that the only answer to her disease is a miracle cure or a prayer for healing. Although we have become very savvy in our techniques of handling awkward moments it still doesn't get any easier.  Many of our caregivers, Kourtney's cousins, aunts and uncles would vouch for us as to how annoying and unrelenting a public outing becomes. My goal is to give you some insight into our "public" lives as well create awareness next time you or your family see anyone who looks different.

 Kourtney handles the "paparazzi" way better than I do. I know, being the mom and all, that I should be the "bigger" more gracious person, however I have developed this innate "radar stare detector". When I am pushing Kourtney in her wheelchair, I generally have the advantage of catching peoples' eyes before they catch Kourtney's when they are trying to "figure" out my daughter. My most effective strategy is to stare back.  It actually works,it creates an awkward moment and they end up looking away. For the people I don't end up catching on my radar, I just run them over with Kourtney's wheelchair and say, "Oops I'm sorry!" (The latter is not true, but sometimes I feel like doing it.  Uncle Wonderful on the other hand has pulled off some 'accidental' crashes.) If you can't keep yourself from staring at least try smiling or saying something nice

The questions and comments are exhausting. Most of the time when people ask me, "What happened?" my general response is "Why do you want to know?" It generally makes people embarrassed and they have no idea how to answer. On rare occasion people say they would like to pray for her.  That is fine as long as they don't do it right there in public.Just remember God hears your silent prayers just as much as your public prayers.  (Kourtney is a teenager and it is embarrassing) A lot of people assume she is burnt to which we reply, "If only it were that simple."  I refuse to give a lot of detail unless people show genuine concern. I have learned not to throw my pearls to swines.

Then we have the "miracle cure" people. The one situation that stands out in my mind was an  lady who wreaked of alcohol , her shirt buttoned up wrong, telling me I should use aloha vera on her. I have had people (strangers) tell me what kind of pyramid product Kourtney needs. (I am sorry but there is a reason it's not approved by the FDA!)  I usually say, if you believe this product will help my daughter will you give it to me for free? This generally keeps that person real quiet after that.  People!!! don't prey on vulnerable families with your miracle cures! To be perfectly honest I have tried a lot of different products on Kourtney which have done way more harm than good. If I "bought" into every product that was going to be a miracle cure I would be a very poor person and my daughter wouldn't have liver or kidney function.  What  I want the world to know is we have dealt with this disease for 16 years, we know it well……you (the product seller) have seen her for 2 seconds……please don't! We have seen modern medicine (and the power of prayer) work the best in treating EB.

The next topic I want to handle as graciously as possible are your child's questions and stares. Because this is about awareness I want to use it as a guide to you as parents to provide the "best response" when your child asks awkward questions. I think the funniest situation we encountered was in Costco. A four year old boy was sitting in a cart and was staring at Kourtney.  He said to his dad, "Why doesn't she have any hands?" The dad smacked the kid and said, "Stop staring!" The child instantly felt embarrassed and looked away. Kourtney and I laughed about this for a long time. Although we don't  condone corporal punishment Kourtney and I feel much more relieved when the parents verbally reprimand their children for being impolite and staring. It stops the kids from asking more. As much as we want our children to be curious and try to appease them, think of the hundreds of times this has happened to the person on the other end, let it be a social education for your child.

Lately we are learning to laugh more at these situations . Kourtney has "sign language" that her closest acquaintances know, she makes us snicker when encountering some awkward moments. Recently we took Kourtney to a skipping camp in Penticton. We were with Kourtney's "old", I mean former, teacher's aide, Tammy. Tammy has always been able to bring out the sarcasm in Kourtney. I was going to leave Kourtney in the gym for a bit.  I know Kourtney can fend for herself,  but I jokingly asked Tammy to "babysit " Kourtney. Kourtney quickly replied, "I will babysit Tammy." There was a man who was standing there who laughed out loud when he heard Kourtney's  unexpected witty sarcasm. That is what we want people to see- not her disease!!!

We know that this will be a journey for the rest of our lives. If I could I would wish for EB to be completely eradicated from Kourtney's life. In creating awareness, my goal is that when people see Kourtney or any person that looks different that they are not seeing just the disease but the funny sarcastic cute teenage girl that Kourtney is. Creating awareness=Unawareness.

Fall

I have to say Fall and winter have never been my favourite times of the year. The cool, rainy weather acts as a deterrent to Kourtney's wound healing, the lack of sunshine takes an emotional toll on all of us school routines become mundane, life just seems to "fall" apart. This fall feels different although we were hit early by the cold virus,  it is one of the first years in Kourtney's history that the grey cloud (called EB) hasn't been lurking over our heads.

Although the "effects" of the disease are more visible than ever  (more blisters on her face, her stooped walk, her mitten hands and wrist contractures), I feel that we have finally have stayed one step ahead of this wretched Monster called EB.

So what is different? For 2 years, I took pictures of back/shoulder/and leg wounds that would not heal. Due to the nature of the pictures I could not show them to anybody,  except for Todd and some of Kourtney's doctors. I am not talking about small scrapes, infact to measure the size of them we would refer to the ones especially on her back as continents on a map. (Africa and SouthAmerica) It was devastating to Todd and myself when the continental drift would take place, in other words the skin would heal, reblister and then just become one big wound. I spent hours looking at the pictures, to see if there were any signs of healing and attempted to come up with the right dressing to heal the wounds. One day Todd finally had to tell me to stop taking pictures because it was depressing for us to see her skin in this shape and he said it.....it's not getting any better.

During the 2 years of being a photographer, not one doctor ever offered me any hope that these chronic wounds would heal nor did any doctor ever suggest something that would work.  I would lay in bed at night consumed with the fact that this monster had robbed my Kourtney of any kind of normal teenage existence. The pain was so excruciating, dressing changes were miserable, morning meltdowns were an everyday occurrence. I tried so hard to accept that this was the way it was going to be. A lot of people wondered how I could work fulltime. Hindsight is always 20/20 but I believe I needed to work full-time to provide an emotional balance for me.My mother's heart broke watching my daughter in such a state, it was very difficult to watch.

Then last "fall" happened. November 1st was the day we took Kourtney into Children's. We were not given a lot of hope that Kourtney was going to survive, and if she did her quality of life would be greatly affected.  The doctors at Children's sent us home with our tails between our legs with no followup care. We were bludgenoned by the news, and after a week of having Kourtney at home, we could no longer keep her "comfortable". Her pain was so out of control, she was too weak to even sit up in her wheelchair and she was loosing weight. I phoned Dr C. at Children's, his response, "take her to Abbotsford" as there was "no room at in the INN" at Children's hospital. This was clearly God's hand leading us there.  The doctors at Abbotsford hospital collaborated as a team to improve Kourtney's quality of life. They told us that Kourtney's recovery would be long and arduous. But the fact they were even talking about "recovery" was the best news we had yet. Even after we were sent home from the hospital we were still not sure if Kourtney would fully recover......

Now we are almost at the 1 year milestone. I haven't had to take any pictures of her skin because the chronic wounds, although scarred, are completely healed. Kourtney has gained 20 pounds, her dressing changes although still extensive are not painful like they used to be and she has not needed a blood transfusion or iron infusion  in 11 months (she was getting these every 2 months for 4 years prior!!) She is able to go out more and socilaizes a lot more then she ever has. She just turned 16 and will be able to drive with an adapted vehicle. This gives us a lot of hope for independance down the the road as she steps into adulthood. Once again the fact that we can even think about her driving is miraculous.

Starting this week Kourtney will be going weekly into Children's Hospital for serial casting of her right foot. Kourtney is having a very difficult time walking as her right foot is contractured. The Hope is that the serial casting will be able to straighten her foot out, increasing her mobility and transferring skills.

And just a little about me.....I have recently taken a part-time position at work. I feel I have been "checked" out for awhile, and I need to be home more with my family. Shaelyn is at such a transitional age and I want to be there for her (12 going on 17). I want to be around to break up the sibling rivalries,  attempt to be the voice of reason in a teenage world where life does not make sense, I want to be around to hear about friendship issues and their days at at school. I still have been working out at the gym, and have taken back my responsibilities in the kitchen (Todd was doing a lot of the cooking). I feel I can maintain a better balance now that the monster seems to be under control. Life is good right now! I feel I can finally breathe!

Summer Finale

Girls Night in Downtown Vancouver

My cousin Melanie's family. Makenna, Ashlyn, Jayden and Carter.

My cousin Melanie.

My mom and sister Gaylene.

Sharon and Todd.

Fishing lessons with my dad and Aunt Esther.

Kelly!

My cousin Susan and daughter Sydney.

Meldon photo boming this picture.

The cousins waiting for the wedding of their cousin! (I think this could be a new meaning for Gangman Style.

The Future Actor!

Our favourite BC family!

My bros wives. Can you tell which ones are the sister in laws?

Our 17th anniversary!.

Two of these farm boys are married to the above two ladies.

A visit to the "historical Lutzer village"

The cousins!

Emerson

Todd's project- back yard deck. AKA "the Stucture"

And so fall begins.

I feel like I need to pinch myself to wake myself up. This summer was one of the best we had yet. Never could I have ever imagined back in November that Kourtney would have been so active. She kept up with all the activities in Sask,(sang 3 times, sat in 34 degree weather just to be with her cousins, numerous shopping trips etc) and finished up the summer by going to the PNE with all her young caregivers. Kelly, Meaghan, Jordyn- what you have given to Kourtney and to our family has far exceeded any expectations. You 3 have respected our family, shown incredible amount of love and grace to Kourtney and have made Shaelyn feel apart of the "inner circle" as well. You will be missed as you pursue your goals of being nurses. You all 3 will make incredible nurses- because you know how to care - unconditionally.

We now welcome Brittany onboard! Looking forward to spending time with you!!!!

Happy Father's Day to Todd

 Last year I blogged about my relationship with my dad. This year, after the events of the last couple of
 weeks I have decided to focus on the dad to our girls.

2 weeks ago our lives yet again took unexpected turn. Our dear, sweet kitty Fresca was killed by a car. Fortunately we were all out of the house when he met his untimely death. We highly expect (due to the timeline) that the driver of the car had some compassion and immediately called the SPCA. Fresca  had been tatooed (with all of our information) on his first visit to the veterinarian, so Todd got the call.
Todd called me at work.  His voice was unrecognizable, and my heart stopped beating when he told me "something bad had happened." As I felt all the blood drain from my face, Todd choked out the details that Fresca had been killed by a car. My stomach instantly went into a knot when I thought about Shaelyn. Todd told me if he told Shaelyn the news at school he would be unsafe to drive home. We both thought that it would be best to get Shaelyn through her day at school before we gave her the news. I thought I would be ok to get through the rest of my workday, but Todd kept sending me texts, of this precious kitty and our girls. As I was getting these pictures, it became painfully obvious that Todd was very emotional about this kitty as well. I have really never seen so much grief in my husband and that's when I knew I needed to be home not only to give Shaelyn the news but to support Todd as well.

My grief almost instantly turned to anger, as I felt it was just another sucker punch to our family. As much as I could soothe my emotions by telling myself "it was just a cat" and "I don't even like cats", it is what Fresca represented to our family that was so suddenly taken away - JOY-

Last fall when Kourtney was sick Shaelyn was really depressed. She quit eating,she hated coming to the hospital to visit, to add insult to injury we had forgotten to pick her up at school on several occasions. She was carrying so much resentment and guilt about her sister being so sick and her being well. We attempted to pacify her grief by taking her shopping, buying a new pet frog and promising an iPhone at Christmas so she would never be left at school again. Her pet frog met his untimely death only a couple of weeks after his arrival and the promise of an iPhone did not soothe her grief. When Todd had kidney stones and stayed in the ER for an entire day Shaelyn came to me in tears wondering if "Dad was going to die as well." I said no, and in only a way Shae can do, through her tears she said, "I think I need a new kitty, because it won't die." (These words replayed so many times in my head when I got the news that Fresca had been killed).

I talked to Todd after his admission in the ER, and his words were, "there would be nothing better for our family than to have a new kitten to hold, watch and play with. What we didn't realize was that Shaelyn had already picked out her kitty from her friend's farm. As soon as we gave her the go ahead, the next thing we knew we were picking up a 4 month old barn cat. We had not discussed gender, type of cat or even litter training. Todd and I both had mixed feelings when we first laid eyes on this long haired, male barn cat, that had already stolen Shaelyn's heart. On our first day of ownership we had just settled Kourtney into bed when Todd and I collapsed into bed. When our heads hit the comforter, it became evident that Fresca had used our bed as a litter box.  That night we attempted to lock him up in the garage but he escaped, clawed up our custom blinds and found him happily licking himself in our dog's bed. Lexi (our dog) was beside herself. We thought we had made the biggest mistake of our lives.

 Todd ended up taking Fresca to the vet in order to get some clairity and advice on what to do with this new creature. After a very expensive vet bill, we understood more about a male cats and what do with a new kitty and within a week Fresca wormed (or shall I say dewormed himself) into our lives.

When Kourtney's pain was out of control, she would hold the kitty and as the pain medication started to work she would fall asleep with the kitty at her side. On many occasions he was the center of attention as we would watch our cat Jenny hiss at her and Lexi play with him like a stuffed animal. He brought us so much JOY during our pain, and we all smiled when he entered the room.

In January, Todd took some time off to help with Kourtney's care and help with the transition to her new school.  He was also emotionally spent from his concern over Kourtney's condition, trips to the hospital after work and many sleepless nights. Todd,  began exercising regularly, made some of his best meals, came up with a new plan for giving Kourtney's meds that allowed him to sleep more and he worked tirelessly in the yard.  But what began as a 4 week leave turned into a full blown "teachers worst nightmare!"  The 4 week leave turned into 10 weeks.  Todd won't let me post the details here but believe me when I tell you it was horrible to watch him have to go through it.  He contemplated changing schools, careers, and moving out of Abbotsford.  I soon noticed he would spend a lot of time outside but nothing would get accomplished.  He spent countless hours researching rocks walls, patio stones and designs for our backyard but was not able to make any decisions. This was not like him!  During all this we were going through the process of hiring our nanny, and the application got denied. It was just another "thing" that we had to go through, and Todd shut down even more.

I saw this all happening, however I didn't know how to steer Todd in the right direction. I knew that sleep deprivation was becoming a big problem. I would encourage him to sleep downstairs, so he wouldn't have to wake up for Kourtney several times a night. Even on his nights off it was obvious that it wasn't just Kourtney that was keeping him awake. I knew my husband was showing signs of depression, but I was unable to help.

When we told Shaelyn the news that Fresca was killed, she cried for days . . . and so did Todd. I have never seen Todd cry so much in our entire 18 years together. At one point even sweet Shae, said I am more worried about dad than I am upset about losing Fresca. I knew that Todd's tears were not just because of losing Fresca but an accumulation of the events of the last 6 months.  Once again I am so thankful for the great family Dr. we have. I was able to text him and ask for an "emergency" appointment for Todd. We got in right away. It was great timing, because if there's one thing our family can do well it is putting on happy faces while we cover up our grief. We have all gotten good, especially Todd, at "sucking it up". At the Dr. visit Todd handed him a list of all the thoughts and feelings that were bouncing around in his head.  Dr. Kornelsen looked at the list for only a few seconds before chuckling.  His eyes had found the one that said, "I'm 43 and my best friend is a cat."  Dr. Kornelsen with a LOL (laugh out loud), said "that statement alone tells me a lot". He went on to discuss how Todd was dealing with depression.  I don't think anyone was surprised by this, we all saw it coming, it just took losing Fresca for Todd to have a complete breakdown.

Shaelyn had a memorial for Fresca. The Vissers , Grandpa/Grandma Kujawa  as well as Fresca's vet (get this Dr. Katz) came for the memorial. Her comment, was, "Why would Fresca ever want to leave such a beautiful yard?"  Her recommendation was to invest in an invisible fence if we ever got another kitty.

Well we now have a new kitty named "Gracie- Jane". She is Fresca's 5 week old sister, and is a clone to Fresca. Shae got to pick her out as well. She actually was already spoken for, however, the owners took sympathy on our family and we got the trump card for this new little creature. She has filled the gap alright, but never can anything/anyone, replace the Joy, that Fresca's short-lived life brought to our family during one of the most painful circumstances we have had to endure.

Once again we are reinventing how to live so that our circumstances don't consume our entire lives. It is not an easy road that we are going down. We feel we have been blindsided on so many occasions, that we almost are in a state of panic when we get an email or the phone rings. We don't want to live in fear of what the next day will bring, however, we don't want to get to comfortable because as soon as we do it just feels that is when we get pounced on.

The one thing I can say about our family is that we are resilient. We have learned to live above our circumstances. At times we have to admit that we aren't OK, we need to lean on people for our support. A breakdown is important, because it serves as a reminder that it is just not Kourtney that is afflicted with EB; our whole family is. When we lost Fresca we shuddered when we thought about Kourtney's prognosis in November. We couldn't beleive the void that losing Fresca left, we couldn't imagine if it had been Kourtney.

So this Father's day, I want to encourage Todd and all the dad's out there, that it is ok to cry, it is ok to breakdown. Never should a man have to take so many sucker punches and try to deal with it. It was a huge turning point for the girls as well as myself to see this different side of Todd. We all felt the impact of his depression and to see their dad breakdown revealed to us that this man is human indeed.

Happy Father's Day Todd! Love ya!

A little bit of this and a little bit of that

There is so much on my mind that I have had a difficult time putting my thoughts into words. The following maybe scattered, so bear with me.

How is Kourtney doing?

Kourtney was wondering when I was going to blog because she was wondering how she was doing (with that sense of humor she is obviously doing well). We hear her giggle more which  means she is bugging Shaelyn or she is making someone grin with her witty sense of humour. She feels loved and respected at school and just recently sang at her school talent show. (She was more nervous about walking up the stairs to walk on stage than actually singing.) Kourtney has some amazing caregivers in her life, as well as some special friends who are committed to her and bring all of us a lot of joy. She is doing very well, (ahem) comparatively speaking.

Not to be a Debbie Downer, but it 's like the pink elephant in the room that you know is there but nobody talks about. Being a teenager with a disfiguring, debilitating disease is very difficult. There, I said it. We still are faced with a 15 year old girl who requires one to one care, sleepless nights, long dressing changes, many meltdowns and resistance to physio. The years of being undernourished and countless infections as well as the course of the disease has left her body with irreversal damage. Sometimes I don't even know where to begin to get Kourtney seen by the right doctors. For 4 years I  took Kourtney faithfully to weekly hospital visits, with little change to Kourtney's condition. But just as Kourtney has anxiety about walking up stairs, I have similar anxiety about going into Children's Hospital. The thought of explaining Kourtney's history to a resident, watching her in excruciating amounts of pain getting bloodwork, attempting to excuse her lack of motivation for not exercising and just the thought of the drive in makes me break out into a cold sweat. There are so many things that I should/need/could be doing for Kourtney that I just get overwhelmed thinking about it. So instead I have taken the stand to let life with EB happen.

To my biggest loser friends . . .

In my new quest to let EB life happen I feel like the dark cloud that had been hovering around my head is gone.  I'm not sure exactly what has given me a new lease on life; the antidepressant that has dulled all my emotions or the fact that I quit trying to control a disease that is not mine.  I did something I never thought I would do . . . I joined a gym!  It may not shock you as many of you know I am an avid runner and biker.  I love exercising outdoors . . . even in the rain.  The thought of a sweaty body beside me on the elliptical isn't my idea of fun.

Although I was active it was becoming obvious to me that I needed to do something different in my exercise routine. *Almost* 3 years ago I turned 40. I did a celebratory "weigh in" on that warm, sunny day in July and much to my despair I hit a new decade of weight as well. It was devastating for me to tip the scales on my 40th birthday. I justified the weight gain on antidepressants and my metabolism slowing down. For the next 2 years I did my best to stop the scale from climbing further into the next decade, with fancy diets, yoga and even stopping my antidepressants. No matter how much I exercised, it was my love for food that stopped me from losing my middle age weight.

One year ago in June I did my 30 day challenge. I exercised everyday for 30 days, and tracked my food intake using my fitness pal. I lost 10 pounds. I kept my weight off, Kourtney got sick, and with that stress I lost another 5lbs. During that time I was encouraged to go on antidepressants. The last time I went on an antidepressant my appetite increased and I was emotionless. I fought going back on them due to unwanted side effects. But the tears wouldn't stop and I came to realize I had to go back on them so I could be strong for Kourtney.

So as Kourtney got better the and the antidepressants kicked in the weight slowly started to settle again around my middle.  My back and shoulders were sore from doing dressings changes in awkward positions and getting Kourtney up and down the stairs, in and out of the van, as well as many nights of sleeping in the parent hospital beds. Circumstances that followed in February and March left me emotionally spent.  I felt so rundown that I had no motivation to exercise.

After spring break Angela and I decided our 40 year old bodies needed some weight training so we decided to join the gym together.  We had a complimentary personal trainer assessment when we signed up for the gym.  Like two school girls joined at the hip Angela and I wanted to have the same routine so we requested to do the assessment together. It became painfully obvious that Angela was very experienced with weights and was a whole lot stronger then I was. The personal trainer was obviously concerned about my lack of experience and gave me a yoga ball and 5 pound weights to work with, meanwhile Angela was pumping iron. This gave me another reason to hate the gym even more.  I am not coordinated, I don't like others watching me when I exercise, and I don't like being new at something.

So instead of of trying to follow the personal trainer's stick figure training program, I started taking the classes offered at the gym.  I found out how out of shape I actually was, and in many instances felt like I was going to throw up.  But then something happened during my "ride" class. It was a twist of fate (actually I thought it was a God thing). The instructor in the ride class said she had an extra spot in her HIT (high instensity training) class. One has to understand that this class is very sought after and it's not very often that a space comes up, so I jumped at the opportunity. My first class was awkward.  I became painfully aware how weak my muscles were and how uncordinated I was. The instructor, Jody, was so encouraging. Somehow I managed to to weasle my way into regular classes, ( I actually wonder if I was that pathetic or if it was my look of desperation) and I have now been doing the HIT classes for a month. It is the first time in years that I have stuck to a regular workout regime and have seen some great results (I am slowly becoming stronger and a bit more cordinated. I started the class being 15 pounds down from my 40th birthday.  Interestingly enough . . . and this is what I want to reinforce to you, my biggest loser friends. My size in clothes did not change with the 15 pound weight loss. (the lulu hoodies were all still the same size), but now that I have changed the way I exercise, my clothes are much looser, especially my shirts.

SO what I am trying to get at to all my friends who are involved with the biggest loser. (It's a work thing).  It is a long, slow battle. Don't be discouraged if you aren't seeing results on the scale, but be proud of yourself that you are taking steps to make yourself healthier. In our automated world we don't know how to be patient. We expect results quickly but what we have to come to terms with is the metabolism of a human body. It's not something that can easily be changed especially at the tender age of 40. Just be patient, and slowly make little changes in your life. Continue to be active, incorporate exercise in your daily routine, and keep track of what you eat. Don't be discouraged and don't give up.

Give A Shout Out to Megan Barron.  Click HERE for her blog.

Megan has the same type of EB as Kourtney. She just graduated from Duke University, and just recently started her own blog. This young lady has been an inspiration to our family. She has received a lot of publicity for her post about "public prayers". Just so you understand what she is saying is not overstated. Kourtney has had this happen on many occasions and I think Megan does a phenomenal job expressing how it makes not only herself feel but everyone else who has been in the "prayer sandwich".

AHHHHA

Yesterday was the day I was expecting life to fall apart again for us. The EB we know doesn't usually give us this much breathing room. As much as  I tell myself "not to worry" it has become embedded into my mind to have a life filled with crisis.
In my 2 recent reading of articles about EB, I have read that death can occur from cardiomyopathies.(translation, heart problems, valves as well as the heart muscle can become large and weak). As many of you may remember, this was a huge area of concern for the doctors in November as Kourtney's heart was as she would described was pounding and beating really fast.  She fainted many times as well would go ashen white.  The cardiologist was concerned that her heart was enlarged from the last echo cardiogram that was done a year prior. One of the doctors wrote cardiac failure on the notes.
Yesterday we had a followup appointment with the cardiologist. The traffic was fine on the way in which always makes a dreaded trip a little more manageable. I was so nervous, but Kourtney reassured me that her heart was fine, and was angry that she had to go to the hospital. Once we arrived I wish we had a tape recorder, because it is always the same explanations about Kourtney's skin,  how much pressure, will I hurt her? and usually "aww poor girl". After 15 years  one would think that would become easier but once again it makes us realize that "normal" to us is abnormal to anyone who comes into contact with Kourtney. The appointment went well, it always helps Kourtney when there is a cute resident that spent a lot of time trying to figure out Kourtney's cardiac history (because in fine Children's hospital form there were no records that the cardiologist saw us in November). Kourtney is always able to express herself so well, I fill in the gaps where needed. Her heart is * normal*. The pounding fast heart rate has been corrected and there has been no damage.
 I had a long talk with the cardiologist about the reasons why cardiomyopathies occur with children/adults with EB. He has studied this as well, so he assured me was that usually it is due to malnutrition and not absorbing the micro nutrients needed for heart function.( so in November Kourtney was well on her way for heart issues). WE saw Dr Cautermanche later he was patting himself on the back for being the superhero and ordering the micro nutrients. He said it took an old plastic surgeon to figure it out. We thanked him over and over again. You would think being a surgeon he wouldn't need so much affirmation, but this guy seems to. (sorry to the men out there but I have to remember that despite the letters behind his name he is still a man).
My mind could not stop thinking about Kourtney handling the conversation with the resident, coupled with a few incidents and conversations I have had with her last week. As much as I want to take credit for this resilient, self confident, bright child, I am going to step out and say "she has raised me well"  She has made me realize what a selfish life I led, prior to her birth. She has taught me that beauty comes from within(and that is not a cliche),face your fears, and pain is a perception. (I had a hang nail, and complained how much it hurt- she said "poor baby"- it didn't hurt so much after that). We feel that Kourtney's life as well quality of life has taken on a new meaning. Yesterday it was made very clear that Kourtney's life was spared,  because God has not accomplished everything through her that needs to be. We don't know what that looks like or how long we will go before another crisis ,but we need to live each day, knowing we are not in control. We live each day knowing we are in the centre of God's will. It is a beautiful place to be.

Nothing stops cross border shopping

Sorry I haven't updated the blog for awhile. Our normal life has gotten in the way of putting down my thoughts. Yes, I said normal . . . life is good!

It has now been 10 days since our return from Arizona. It was great! Pictures to follow.

Today was a tough dose of reality as Kourtney needed to have routine followup bloodwork done. Kourtney and I both felt that there was nothing to be concerned about, however, we both realize how the procedure can spiral downhill so quickly. So bloodwork was ordered for 3 months after the last set was done in January.

After the "hack" job we endured in January at Children's, Dr. Coutemanche suggested we try our local hospital to get her blood drawn. The best of phlebotomists (lab ladies, pokers whatever you call them) came to help, but nobody could get a sample from Kourtney. Kourtney screamed the hospital down. She said the pain was unbearable. Thankfully, getting the blookwork was not "urgent" so now we are working on Plan B. Arghhhhhhh........

Generally Kourtney and I are so worn out that we can't function after an event of the this magnitude. However, after a hug and a pep talk from Angela, Kourtney clearly stated the plans of cross border shopping would not succumb to the trauma of the morning. I was a bit apprehensive about taking her but Shaelyn was off school, and as it stands, nothing gets in the way of the Kujawa girls going shopping!

I knew all was well when we crossed the border into the USA. The border crossing guard routinely asks us to open the sliding van door to see if the passport pictures match the people sitting behind the tinted windows. I told the girls that when the doors opened to give big, cheesy smiles. Shae being the preteen would not take part but I knew Kourtney was on board with my plan when the border guard kept looking to the back of the van, barely containing his composure. She said he was an easy one to smile for because he was so cute. It kept on like that for the rest of the day.

It was one of those days that a mom cherishes forever with her two daughters. There was no bickering, secrets were shared,  including Shaelyn having a fear of owning 73 cats and dying alone. Shaelyn helped push Kourtney in her wheelchair, lifted the wheelchair into the van and provided the musical entertainment. Kourtney kept the one liners coming and kept us all on our toes. It was one of the best days I have had in *years*.  It reassured me that I didn't have to have lab results to know Kourtney is OK. We are so thankful. Everyday is a gift.

Sigh of Relief

We are breathing a little easier these last few days. Since my last blog the situation is now in the past, it would be easy to ruminate on how we have been wronged in so may ways, but our family has chosen to practice Harold 3:16, and take the high road, move on and forgive. We have been through too much as a family to let something like this destroy us.  

Kourtney is doing well. Mornings are the worst part of the day as they are greeted with "a hangover" from the pain medication she is getting. The tears come easily, and with that comes a lot of anxiety on how she will get through her day of school. The rollercoaster of emotions every morning wear us all down, as Todd and I both have to negotiate with her. In many ways it would be easier on all of us to give into her. We have come up with guidelines for staying home, if she doesn't have a fever, and if she isn't vomitting. Once she starts moving and facing the day she perks up and is back to her resilient little self. She loves her new school and happy to be there.

Shaelyn and I are taking off today on a overnighter in Bainbridge WA for a skipping tournament. It is daunting for me to drive on my own especially in the torrential downpour we have had for the last two days straight. I am looking forward to spending some one on one time with Shae, and do some shopping for her 12th birthday that is coming up next Saturday. (  I love that my girls have inherited the shopping gene ). Todd and Kourtney are going to have a date at Kourtney's school play.

Once again we are reminded that Kourtney's unexpected full recovery was a promise to our family that God still wants to accomplish amazing things through her. We know the "bumps" along the road is a deterrent to this, and that is why we chose to face each day and each situation with boldness and courage.

HIGHS and LOWS

It is difficult to describe this last week.  It has been highlighted by some soaring highs and some crushing lows.  

Once again we have been blessed in unbelieveable ways once by everyone at Kourtney's new school.
As well I had the privilege of being a part of Angela's baptism, and was part of the cheering squad to support the rest of her family,  Scott, Jordyn and Jenna as they took a step of faith with Baptism as well.  Todd and I were thrilled to see the many staff members from ACS in the congregation to support the Visser family. We definitely feel that Kourtney is in the "right" place. Kourtney feels the same way; she doesn't cry when she has to leave for school, her stomach problems have settled down, and the heart palpitations are gone.

Just when we thought life has settled into a "better than new" normal, we have been blindsided, once again, by a major set of events. To preserve the integrity of everyone involved, I will not and cannot go into any detail. We believe that it is an "attack" on our family but  once again we feel "protected" in so many ways that we can't even begin to describe how we know and feel that God is looking after us. As a family we have chosen to claim Ephesians 6:12. 

"For our struggle is not against flesh and blood, but against the rulers, against the authorities, 

against the powers of this dark world 

and against the spiritual forces of evil in the heavenly realms."

Please hold us even higher in our prayers this week.

.

It takes a village

"It takes a village to raise a child." I have heard this saying over and over again, and in many ways felt resentful that the village (Abbotsford) has not taken this on...........until recently.

Kourtney was greeted warmly in her new school, not just by the educational assistants, and support staff but by teacher's, principal as well as the students. I don't think we fully "understand the undertaking" that went on to get Kourtney established in the school but we "appreciate how the team scrambled not just to accomodate Kourtney but to receive our whole family with open arms. I know that what they accomplished in 6 days generally takes months and months of planning. Thank-you ACS.

The first day of school, the plan was for me was to spend the whole morning with Kourtney at school. I had a meeting with the educational assistants (EA's), Kourtney chose to go to her English class. After the meeting, I went with her EA to her English class. Kourtney looked at me and whispers something about being "lost". I panicked thinking she was "lost on her assignment" and the the mother bear took over. She then looks again at me and I came closer, and she whispers to me "get lost". The look on my face was one of pure delight and I said ok "see you". I asked the EA if she was ok with Kourtney on her own, and she said of course, and I exited doing a little bit of a happy dance. It thrilled me to see Kourtney want to be independent again.

Todd  has been thrilled to be working with a staff and a school that is willing and able to use to help Kourtney make use out of her iPad. All her text books, and assignments will be done on her IPAD. In the 1.5 years in the public high school, not once were the team able to get Kourtney up and running so quickly in technology. It frustrated us to no end that no one seemed to care or take this on as a reasonable and best option for Kourtney.

Kourtney managed to hold up ok. She is only taking two classes, but every day is different. Some days she is there in the monring, some afternoons, some mid mornings and so it goes. We want to preserve her strength and decrease the amount of stress on her body.

All in all we still see signs of improvement, even with her strength. She is using a walker to get around the house and are praying that eventually she can use it a school to get around. We ask you to continually pray for our family. We can not survive on our own strength and know that the only way through this has been the prayers of "His people"

She is off

Typical learning session; Mr. Lewis, Kourtney, iPads and Lexi

Well, Mr. Lewis pulled it off! Kourtney now

has officially passed Science 10!  Mr. Lewis said goodbye to our family on Friday and Kourtney is returning to school on Tuesday. As much as this seems like a no brainer for Kourtney to become a part of civilization again, I have very mixed emotions about it. While Kourtney deals with anticipatory pain issues, I have anticipatory issues about Kourtney getting worn down again. 

We made the decision to change schools. A part of me (OK, all of me) wanted to keep Kourtney at the high school where she was going. It would have made the transition back easier on both Todd and I. But Kourtney could not go back to that high school where she felt betrayed, friendless and found no place of refuge. Although we don't expect the grass to be greener, somehow switching her to a smaller, private Christian school seems to be better fertilizer to make the "grass greener". Kourtney made the choice of school she wanted to go to, hopefully this will give her some motivation to get out of bed in the morning and face the day with courage. I also have to keep in mind that Kourtney's pain is way better controlled, she has uninterrupted sleeps and her body is so much stronger. We have "safeguarded" this semester by enrolling Kourtney in two classes, English and Math. Everyday will be different as far as times she has to be at school, and although it is a scheduling nightmare for our caregivers, it will allow Kourtney to have some "sleep in" days. Although we are not going through a crisis now, it many ways we need just as much prayer as we did a couple of months ago. It is the daily grind that wears us down, and although there have been many positive changes, the bottom line Kourtney still has EB and that in itself says it all.

We did manage to go to Kelowna for two nights. Kourtney was able to go shopping and wasn't as worn out after it all. She led worship with Todd at my brother's "church". It was a sweet moment for us as it was 3.5 months ago when we were in Kelowna when we first noticed that there was something really not right about Kourtney. So, for her to be back there doing what she loves most was reassuring to us that she has indeed become well again. But once again it is about balance . . . . . if we all could lead a life of balance, how much better our lives would be.

Aegrotat Standing

It is not very often that somebody goes to the wall for Kourtney. Over the last 3 weeks there has been a Hospital Homebound teacher who has been coming in and teaching Science 10 to Kourtney. He is a retired teacher who earns extra money by coming into kid's houses and teaching them while they have been sick. His age and demeanor first made Kourtney uncomfortable, but  she realized that he knew how to teach and to make her understand science and so the relationship began. It is quite the site to see; Kourtney and Mr. Lewis sitting on the couch with their iPads, with Lexi snuggled up beside Kourtney making sure this strange man doesn't get too close to her beloved Kourtney.

With the first school semester ending the question was how are we going to get Kourtney to pass her Science. Mr. Lewis was very adamant, along with Kourtney's science teacher, that she should just finish up the chapters and not have to write the provincial exam. The school counselor stepped in and indicated that Kourtney had to write the final provincial exam. I shook my head and once again validated how people cannot think outsisde of the box for our Kourtney.  I had nothing to give;  no more fight; whatever will be will be.

(DA DA DAH - hear the bugle sound of the Calvary) Step in Mr. Lewis! He was outraged with the rapid response he received from the school coupled with the lack of consideration for Kourtney's situation. This man was ready to go on the warpath and beat down the door of the Ministry of Education.  He immediately emailed the principal and the process began for Aegrotat Standing (a special set of circumstances for which Kourtney qualifies whereby she will not to write the exam).
This all "went down" while I have been in a gravol induced coma for the last 3 days due to the stomach flu.  I didn't send an email, I didn't have to talk to anyone!  Mr Lewis did it all.  Wow! It was so nice for someone to be in our corner for Kourtney fighting for her.

We still don't know the outcome of this but it sure does feel nice not to have wasted emotional energy like we have done so many times before . . . even if it is denied. I have a feeling that Mr Lewis will stop at nothing for Kourtney.

All in all Kourtney is doing extremely well, she has conquered her fear of the stairs, areas of skin that have not healed up in years are healed, she is sleeping well and she continues to put on weight. It still feels surreal  that she has come this far in such a short period of time considering the prognosis she was given. She even walked into Costco the other day......a huge feat for her.

Tough Love

I was really torn about returning back to work last week. Although Kourtney's blood work improved remarkably and there were so many positive signs that she was on the road to recovery, the one person who has to be convinced that she is better is Kourtney. One of the keys to Kourtney's recovery was getting her pain under control. We believe that she has had an incredible amount of pain for years. The pain medication does not take her pain away but changes the perception of her pain. So once again there is a fine line between too little or too much. Over the past two months we have kept her pain well managed in order for her to heal, which results in her being a bit more sedated. The last few weeks she has not required extra pain medication except after dressing changes and she has been lucid and awake during the day.

The pain medication has helped ease Kourtney's anticipatory pain before a dressing change because she knows it is not going to hurt as much, but the one fear we have not conquered is our stairs. Kourtney's feet and knees have been so painful that going up and down the stairs has caused considerable distress. We haven't pushed her very much to go out of the house, but after knowing her blood work was good, we felt we could encourage her to go down the stairs and get out of the house. I returned back to work only a few days after we got the blood work results, and much to my disappointment Kourtney came up with many excuses not to leave the house. The biggest one was that she was in too much pain, then she got extra pain medication, she would be sleepy and not feel well enough to leave the house. I then had "the talk" that only a mom could have (everyone else would feel heartless). I told her she had to face her pain, not to give into it. It fell on deaf ears, as Kourtney lamented that nobody believed that she was having pain.

Wednesday morning, I was adamant that Kourtney had to leave the house after the dressing change. I woke up only to find the following YouTube video. I showed it to Kourtney.



 Kourtney rolled her eyes when he talked about his parents being his "heroes", and was visibly angry that I would show her this.  ( I don't think you can ever expect to liked as a parent to a teen.)  The dressing change went smoothly, and Kourtney started complaining about pain. Thankfully I was able to be confident that her skin was looking good and told her the best thing for her to do was to get out of the house.  (This was truly one of the most difficult things that I had to do because honestly I have no idea how much pain she had but I had to show some tough love.)  I left her in the capable hands of Meaghan and  I went out for a walk. Upon my return, Kourtney and Meaghan were gone. She LEFT THE BUILDING!!! After a few hours she returned  and I had my happy, pain free, bubbly teenager back. What a huge gamble, but it worked.

Now we just have to get her out of the house every day, so she can get back to school for the new semester.

U-turn

During the last few months that Kourtney has been sick I have blogged about waiting for Kourtney to turn the corner, and our family establishing the new "normal"! Never once (and not because I am a pessimist) did I think that I would be writing the following. This comes with a disclaimer: there is nobody on this earth that should take credit for this . . . it is God who has led and guided us through this and, we believe, performed . . . a miracle.

 Luke 1:37 reads,  For nothing will be impossible with God."

On Friday we saw the occupational therapist and physiotherapist. They took a look at Kourtney's feet and gave us a lot of hope that they could fix her problems with non-surgical procedures. They encouraged Kourtney not to give up on her walking. I wanted to be positive but lurking in the back of mind were Dr. Davis's words that a few months ago stuck through my heart like a knife. "Her bone marrow is not working anymore." Although her body is structurally OK the engine is not.  How could I be hopeful?

Monday we got a call from our family doctor.  Kourtney's followup swab results did not isolate any MRSA (keep in mind it took 3 years to get rid of it before, and this time 6 weeks).  We have learned not treat it with Antibiotics as it more of a resistance.  We used a special dressing, better pain control, and better cleaning of the skin. In the back of my mind I started to become hopeful that the new nutrition was playing a huge role in her progress.  I then allowed myself to become optimistic that Kourtney,  maybe, just maybe Kourtney may be making some red blood cells to fight infection (again keep in mind she has not done this for about a year and a half.)

Today was blood work day or "D" day.  In trying to be proactive in saving Kourtney from too many pokes, I suggested an IV be put in as they were doing the blood work, just in case her hgb was low and she needed a transfusion. ( Oh yee of little faith).  An anesthesiologist was involved and to make a long story short it didn't go well.  It was the worst IV (hack job) I have ever witnessed and it left Kourtney bruised, blistered and without IV access. As he was rubbing my daughter's blistered fragile skin, he was making plans to go to the OR for sedation.  I halted it, and said, "let's just do the blood work, and then make decisions from there."  He apologized.  I was so furious with him that I couldn't even speak.  The blood was later easily attained by an experienced "pheblomitist" aka a dinosaur. As we waited for the blood work results. I prayed for mercy for my little Kourtney. I was shaking. I was so nervous and then Kourtney said, "I know it will be fine mom!"  Oh how I wanted her to be right.

The results started to slowly come back . . . hemoglobin higher then 6 weeks ago, and her retic count was high. Translation: this kid is making her own red blood cells for the first time in years,  her bone marrow, has been unlocked. The icing on the cake was her overall nutritional status is now better than on Nov. 1 when the doctors were not too concerned about it. Keep in mind in December her albumin (protein) plummeted down to 12, and is now at 27!  Almost within in a normal range.

When Dr. Davis walked in it was the 2nd sweetest moment of my life (first one was when I took Shaelyn to the genetic doctor 6 weeks after she was born).  He  said, "Wow, this is the best that her blood work has been in the 4 years I have known Kourtney! What have you done differently?" Cheekily I replied, "I took her to Abbotsford Hospital"!  He readily admitted how Children's Hospital has dropped the ball many times with Kourtney's care. Dr. Davis expects that if things continue this way Kourtney may not need blood work for at least 3 months.  (This is the same doctor who had previously told me more than likely Kourtney will need a transfusion every 3 weeks).

Kourtney has not just turned the corner, she has made a complete U-turn for the better! I didn't expect that the new normal has the potential now to be better than the old normal. But from where we sit today, it is looking pretty good. We  believe it was only through divine intervention that there was no room at the inn (children's  hospital) and we ended up in Abbotsford where we received the best holistic care, and changed many, many components of Kourtney's care.  I believe that the biggest change was getting her pain under control which in turn helps her sleep better, tolerate her feed better, and as earlier mentioned eases the dressing changes. The added bonus was how Dr. Courtemanche was willing to consult from afar. There are not many doctors that are willing to take this on, and for that we are thankful.

I return to work tomorrow with a huge sense of relief. We have hired an experienced nurse/nanny from the Philippines and are praying that it works out well. I am looking forward to getting back to work, but I feel torn because I feel my time spent being a full-time mom has been so precious. I realize though that for my relationship with Kourtney I need to take a step back, and make the apron strings a little looser.

More good news . . . Shae made the competitive basketball team. She has been practicing a lot in our backyard. She is so excited.

 Making plans for Kourtney to return to school in the new semester. I will keep you updated.

A BIG THANK-YOU to the many people who have supported us through this crisis. The many meals, the many cups of coffee, the Pastorate group who did yard work in the pouring rain and most of all the people who prayed. It was only through the many prayers that we got through this. I feel that I can breath again . . . . .

uh oh Todd has been throwing up all night . . . I just hope it doesn't spread.