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.

A YEAR IN REVIEW!

When the righteous cry for help, the LORD hears
and delivers them out of all their troubles.
The LORD is near to the brokenhearted

and saves the crushed in spirit.
Many are the afflictions of the righteous,
but the LORD delivers him out of them all.
(Psalm 34:17-19 ESV)


As I took down the Christmas decorations, I was overcome with the gut wrenching pain that has been my affliction over the last couple of months. I missed my parents even more as they had filled every inch of our home with love, warmth and groceries. The Christmas decorations went up during our crisis and taking them down was a stark reminder of the gravity of the last couple of months. I tried to cry, but the tears would not come; I felt numb. So what did I do? I started rearranging furniture, organizing closets, cleaning out the garage, I went on a cleaning tsunami, with the sound track of Les Miserables playing in the background. Everyone stayed out of my way, except for our curious cat, Fresca, who obviously doesn't know that when "mom means business", stay out of her way. It gave me a lot of time to think, pray and process. As I was cleaning, I started thinking about the year we had and the pain of the last few months started to diminish as I realized how "rich" our year had been.  The following is from my hairdresser/friend Jackie Maclean's post on Facebook:

"I'm going into the new year without new goals or agendas. Only deep sense of gratitude for what I have already been blessed with. This year I've seen the great losses of so many and it's reminded me again that life and family is so precious!" 

January

A trip to Saskatchewan for my grandma's "home-going", What a celebration!

Aunt Rebecca, Kourtney and Shaelyn.

March

We celebrated Shaelyn's 11th birthday in Tuscon, Arizona where we had a great time visiting Todd's cousins and Uncle Danny and Auntie Olga.

Catching up with cousins Kourtney and Natalie

Off to explore Sabino Canyon with the cousins and Uncle Danny.

May

Shaelyn went to Moncton, NB for a skipping tournament.  My parents came along to watch and I got to catch up with my friend, Lorraine, who now lives in Nova Scotia.

It was great have my mom and dad come to Moncton with Shaelyn and I.

My twin and I riding in a horse drawn buggy in PEI

July

Summer started with a bang with visits from cousins, trips to Kelowna, Alberta and

Saskatchewan.

Not sure who can jump higher!

Pretty sure it's me.

Ciara, Shaelyn and Kourtney getting to know each other in Okotoks.

Spending a day at the lake with Tammy and Keilan in Calgary.

Kourtney and Auntie Charlotte out for a stroll in the park in Regina.

Fondu at the Grizzly House in Banff 16 years after our honeymoon.

Enjoying the scenery cycling in Banff.

August

Lots of great times enjoying the sunshine all month long!

Nate, Shaelyn and Clarise at the beach in Kelowna.

Floating the Penticton channel with Uncle Wonderful.

Hanging out with dad on the Ferris wheel at the PNE

September

We never really got into a routine, started noticing signs that things weren't right.  Kourntey celebrated her 15th birthday with a PINK party!

Cupcakes by Kourtney andApril!

Happy Birthday hug from Kim!

We conquered the Grouse Grind

October

Sylvan Lake for family reunion, next week to Kelowna. Kourtney sang at her Uncle Meldon's communion service . . . . . this is when we knew there was something really wrong.

Lutzer family reunion at Sylvan Lake was a blast . . . again.

November

Kourtney was admitted at Children's . . . . . and you know the rest.

A huge blessing to our family has been our friendship with the Visser family. We love you guys and are thankful so much for your support, your commitment, advice, as well as your unconditional love to our family.

Scott and Angela going to a redneck Christmas party!

Shaelyn and Fresca

I was able to conclude that 2012 was one the *Best* years we have had, there was no way that we could let the last few months cloud the accomplishments, the travels, as well the relationships that we established, built, and fostered. Although the last few months have been horrendously difficult, there have been many positive changes.Our family is now stronger, closer and healthier emotionally then we have for years! Happy 2013!!