Taking a Little Break

The blog is taking a break and will return with full vigor in the new year. Don't worry, things haven't been quiet around here lately and we'll tell you all about it when we catch our breath.

Thanks for checking in with the blog. Here's a few interesting stats about the blog since November 21.

*2424 visits
*295 different visitors
*107 visits on Dec. 16 was the highest
*visits from 5 countries and 41 cities
*3:41 is the average time per visit
*4129 pages viewed
*80 people have visited the blog more than 50 times
*46.24% of visitors use Internet Explorer / Windows (yes, we have that data too)
*3 people have visited on their iPhone (we know that too)
* we also have data about screen resolution but that is rather mundane so it won't be included

We hope these stats don't creep you out, but they do show just how far reaching our journey is. Again, thanks for walking along side us and we appreciate your kind comments.

What Else?

I am home with Shaelyn, she has bronchial pneumonia. On antibiotics, coughing a lot and congested.

Since Kourtney has started on the antibiotics, the honey dressings don't work as well because her skin has is drying out. So now we have itchy alligator skin....which means....more blisters as the story goes. We just need patience and insight into how to best care for her again. What works one day doesn't always work the next, as we have discovered with EB. I talked to Dr Courtemanche today, he kindly ordered some flamazine cream for her.....since we had to go to the pharmacy already today. I am hoping the goopy cream will help make her less itchy now and help heal her sores.

We have 4 days left of the antibiotics...I am hoping that things settle down once she is done with them.

We went to the movie "Bedtime Stories". Good little movie.

It's Shaelyn's Turn

Shaelyn has not been feeling well the last few days. She even went to bed and slept through Christmas dinner yesterday. She had been sleeping peacefully until 0545 this morning when she woke up, started coughing, and said she couldn't breathe. Janelle suspects she has pneumonia and has rushed Shaelyn off to the hospital in Abbotsford.

Keep you posted later.

Christmas

This morning on this very snowy day, Murray (my brother), Shaelyn, Todd and I sat in our hot tub as the snow was lightly falling on the ground. Todd and I came to the conclusion that the hot tub was the best investment ever.

We are so excited to have Murray here. He is the youngest out of my 6 brothers and sisters. He has become my coffee drinking buddy and wow does he ever make a good cup of coffee! He decided to spend Christmas with the Kujawa's this year instead of in Saskatchewan with the rest of my family. I don't think Murray will ever comprehend how much his visit means to us. Our family has had a very difficult time "connecting" with our Saskatchewan family over the years, so it is wonderful for my girls to have one of my siblings around.

As I look around at my sparsely decorated house, our simple tree, and our lack of gifts this year, I am the most joyous I ever have been. I feel honoured to have my brother here, and am relieved that Kourtney is comfortable for Christmas. Shaelyn is a natural in the snow, and loves sitting in bed watching movies with Zazu curled up beside her. That to me is Christmas . . .

I have let go . . . .of what our society thinks Christmas is, and have entered a new era of teaching my children about the simplicity of Christmas. We don't know if we will be snowbound tomorrow for the day, but even if we are that is OK . . . because I know I have it all. If mom is happy . . . so is everyone else.

Wishing you all a joyous Christmas!!

A Day in Vancouver

Today, Kourtney and I were supposed to go into Vancouver for a dressing change at Children's. I was going to leave at 0630, but thanks to The Weathernetwork's traffic cam, Todd cancelled it for me. The weather in Abbotsford wasn't too bad, but in Vancouver it was miserable.

Unfortunately, we still had to go into Children's to pick up some meds for Kourtney. We even walked away with some jic (just in case) antibiotics valued at $1500, just in case Kourtney runs into any difficulties and we are snow bound in Abbotsford. Today we talked to one of the receptionists at Children's. She has been following our comings and goings for more than 10 years and congratulated us on staying sane. She jokingly asked if they were going to name a wing of the hospital after Kourtney. I don't really think I will ever comprehend how Kourtney's story has been so far reaching just at Children's Hospital.

After 1 1/2 hours of waiting for meds, phone calls and prescriptions we went to beautiful Stanley Park which was covered with more than 12" of fresh snow. We took the miniature train ride through the forest and took in an amazing display of Christmas lights.

Joy to the World

Amazing what a blood transfusion and codeine can do. Afterwards Kourtney said to me, 'I am on fire mom." Singing is what Kourtney enjoys doing. Seeing Kourtney standing up on stage is such a powerful testament of God's unfailing provision. If you could see what I see everyday during a dressing change . . . you would be amazed that she is standing up there.

Thank you to all for your encouragement over the last couple of months.

Cold . . . BRRRRR . . .

Today, the last day of school . . . we are all home warm and snug....! Kourtney had an OK day. Dressing change was a little brutal...! Kourtney is planning on singing this weekend in church. Hopefully we won't have a blizzard.

Keep praying. We definitely have been put to the ultimate test and now we are trying to put our family back together. There have been some really tough issues to sort through and make sense of. We don't expect to repair right away . . . just like Kourtney's back, it will take time, a lot of prayer, patience and insight into how best repair the collateral damage that has occurred as a result of our family being in crisis. We are being guided by a psychologist that knows Kourtney and is willing to take our family on.

When God is Silent....

Todd woke me up to tell me that my 106 year old Grandpa passed away at 0500 am. My 100 year old Grandma is rejoicing in Saskatchewan that my grandpa is in heaven with Jesus . . . can you imagine 106 years old?

Today it feels like a huge load has been lifted. Kourtney is not just a little better . . . she is much better. Her spirits, her colour, her attitude, her pain and her sores are enjoying the extra oxygen and antibiotic relief.

I just started to read "When God is Silent" by Swindoll. One of things that struck me is Job's depression through his trials. Although he did not curse God he did ask God "why" and that God was silent. The author gives some practical statements through Life's Trials:

1. There are days too dark for the sufferer to see light.
2. There are experiences too extreme for the hurting to have Hope.
3. There are valleys too deep for the anguished to find relief.

God does not respond and say, "Shame on you" for feeling like that because God can handle your words. You never get over grief completely until you express if fully. Don't hold back. Reading Kourtney's blog over the last month, I think I have expressed my grief, and in turn I have found comfort in people's interest, comforting words and support through these difficult times.

As torturous as the last 4 months have been, I can say that I believe more in God and his promises of faithfulness than I ever have. I believe that the medical team that has now been put into place for Kourtney is strong and will assist me through her years, and Kourtney will learn to trust them and start making her disease her own, and make decisions for herself.
Kourtney's insight is so deep already. One day a friend of mind came into the house and hugged Shaelyn and then said to Kourtney, "I would hug you but I don't want to hurt you." Kourtney said, "It hurts me more if I don't get hugged than the blister you would make if you hugged me."

Although, Kourtney still isn't out of the woods yet, we are thankful that she will at least enjoy a comfortable Christmas. We are praying that the "combo" works in her favour and her immunity will be boosted and the bugs will be eradicated.....!

Yesterday, Kourtney told the plastic surgeon that she was still waiting for the brain transplant for her mom. (For more info regarding that see blog January 2006!!!)

We will continue the updates....

HOME AGAIN

This time....we are home....and I feel a huge weight has been lifted. Thanks for all your prayers. We are praying that Kourtney will begin to improve and our lives will return back to our normal state. She was quite punchy today with everyone from myself to the doctors. I am so tired I am going to bed.

Blessed....

Today my friend Sheila called me. Her mom Joyce Barnes (The Green Lady) passed away from a brain tumour. She was diagnosed about 18 months ago and she made a list of everything she wanted to do before she died . . . and she accomplished them all. She was the type of person that lived life to the fullest and touched every one that met her . I feel truely blessed to have known Joyce. She is the biggest reasons I pursued maternity nursing. She had such a passion for the "wee ones" and passed her passion on to her daughter, Sheila.

We are admitted at Children's. Kourtney will have her blood transusion tonight and the will get IV iron starting tomorrow. Hopefully, tomorrow we will go home. Today was definetely a day arranged by God . . . let me tell you. Ok I will . . .

Yesterday my inlaws, Dave and Bev, came over after they went to church and I was so tormented over Kourtney's blood loss during the dressing change and the fact that we would have to wait until Thursday to get anything done about it. It just seemed like everything was getting a little too close to Christmas, and during the holidays it becomes even more difficult to see specialists. Bev prayed for a miracle to happen . . . and after she prayed it was like the path was made very clear. Todd and I decided to take Kourtney to the ER in Abby and were dreading the wait, but just before we left, one of the doctors I worked with called our house for a totally different reason. He asked us how things were going and I told him I was bringing Kourtney in. He spoke to the pediatrician on call that day and shared our story with him. Minutes later, Kourtney was directly admitted. The pediatrician called Children's Hospital and spoke directly to the hematologist we were supposed to see on Thursday and directly to Dr Courtemanche who happened to be on call. They "concurred" that Kourtney should be brought in Monday am. It just seemed a bit too smooth after all that we had been through . . . our night was restless as we knew it was going to be a big day.

We (Todd, Kourtney and I) left for the hospital at 0630 this morning and were met by Dr Courtemanche in the ER. He arranged for us to be seen by more specialists today than during the 21 days we spent at Children's since August. It was like a revolving door of nothing but knowledgeable, capable people coming in and talking to us. The IV was put in by our own special anathtetist. The nurses were a bit put out by the fact that their own could not do the IV. II said, "Believe me you will thank me." I think they did . . .

The hematologist came in and talked with us for about an hour. I finally got a good understanding of Kourtney's anemia issues. Kourtney will be transfused tonight and then will start on parental iron (IV iron). The IV iron will only have to be given once a month, which is good news because IV access is such an issue for her. He also brought up the bone marrow transplant research that is being done in the states. He doesn't know a whole lot about it but will do research. Although he did state that he hasn't heard much about it and he is in touch with the place in Minnesota where it is being done. I am just glad to finally talk to someone who has a bit more of an "in" with this and is willing to look into things for us. I believe the door will be closed or a window will be opened into what is happening down in the states.

We also met with infectious disease doctors. Kourtney is now on a new antibiotic that should kill of almost everything growing on her skin. We are hoping that a combination of transfusion, antbioitics and maintenance iron will help her heal, and give her more energy. Finally we are hoping to see some light at the end of the tunnel!

We also had a long talk with our plastic surgeon, who seemed quite pleased with himself for arranging everything for us. He said that we should only deal with him from now on and he would arrange for Kourtney to be seen by everyone that needs to see her. They wanted to admit Kourtney overnight and were told there was no room, Dr Courtemanche made them shuffle the wards so that there was room for Kourtney. All in all, a long day, but a good day . . . I am just hoping to get a bed for tonight otherwise I will be cuddling with Kourtney.

Kourtney was in better spirits today. Dr Courtermanche walked in this morning and said, " How come you are not in school?" Her response was, " I don't know? You tell me." She is not nearly as flat as she was, I think she is starting to accept the school stuff abit more, and I actually think she is in less pain. She just needs to be perked up and her hemoglobin brought up (she was down to 65 today)

Yesterday I saw the girls from maternity . . . wow do I ever miss work. I am so hoping to get back there soon. Although a long day . . . it was a non-resident day for us.

The only thing that happened was that the lab messed up some of Kourtney's blood work, so she had to be poked again. The lab lady could not get the blood. I didn't say anything until I looked at Todd and his face was as white as a ghost as he was watching the needle go in and Kourtney was going over the top. I took a stab at it and got it . . . I really don't like doing that but sometimes it is the best.

Thanks for your prayers.....I am praying for a peaceful Christmas.

HEMATOLOGIST

We went to Abbotsford hospital, we were admitted . . . she was going to have a blood transfusion but the plastic surgeon halted everything, because of Kourtney's difficult needle access. So we are home and going tomorow to Children's to be seen by hematology, blood transfusion and possible admission. I am so glad we took her in today . . . to expediate the process. I really love that hospital . . . we would still be waiting in emergency at Children's. I think this is what we will do from now on. Keep praying.

Admitted

We are taking Kourtney in to Abby hospital to be directly admitted. Today was rough for her. Shecould barely make it up the stairs and to the bathroom. We are praying she may be able to see a hematologist sooner now.

Today...

Last night was a very rough night. Kourtney was extremely restless, despite the ativan. Through the night we gave her some meds for pain and I forgot to close the med port on her feed. (Kourtney is g tube fed and she gets her feeds through the night) and her feed leaked everywhere. She was complaining of being sweaty, and I thought she was having a fever, but in a weird kind of way I was relieved that it was her feed despite the mess it created. (Thank goodness for soaker pads!!!).

So today, I am trying to recover from the headache I got over night. Kourtney is still sleeping and Shae is curled up in bed watching a movie, and Todd is just trying to make sure his "ladies" are looked after today. My headache is mainly from being worried about Kourtney. Her quality of life has become so poor over the last 4 months, and we just can't get her out of crisis mode no matter how many visits to the hospital we do (and you know how many times we have been there). I am hoping and praying that the trip to the hematologist will start her on the road to recovery. We had her out last night and by the end of the evening every bone in her body hurt. She is stooped in her gait because everything hurts when she walks. She is supposed to be singing next week at church, but I am not sure she will be able to. She is looking extremely forward to the arrival of her Uncle Murray. Just the thought of her young uncle coming brings a huge smile to her face, as well as Shaelyn, who can't quite figure out which uncle he is (I have 3 brothers). I am just praying that Kourtney feels well enough to do some things while he is out here.

Home Again

Kourtney was not admitted yesterday, despite her severe anemia issues. She is now starting to retain fluid because her hemoglobin is so low. We will be seeing a hematologist sooner than later next week. I am asking for a lot prayer when we go to that meeting, because I feel that this will be my opportunity to ask the right person about the bone marrow transplant. I am taking in letters with me from people I have worked with that can basically vouch for me, that I am capable of making good decisions not only for Kourtney but also professionally as a nurse. I just don't want them to think I am burnt out mom with a notion. I also feel that we have made some very tough decisions in the past and that the one thing I have always have been is realistic in Kourtney's care. I want to be able to share with the Dr. that Shaelyn's amnio DNA showed that she would have EB also and now this healthy skinned daughter is a bone marrow match to Kourtney. This will be a very very huge step for me. I am just praying that this Doctor's heart will be ready to hear what I have to say, and not just listen, but hear that I feel that this needs to be investigated for Kourtney. I think clinically right now Kourtney warrants some drastic measures, and I believe that will be very clear to the hematologist just when he sees her. I don't know what day it will be next week, but we need to be covered in prayer that day. I am also praying that a central line will be considered for administering the iron. I don't want Kourtney to keep on getting poked and I do believe the IV iron needs to be given at least 3 times a week.

Our meetings went OK. Our dermatology nurse, Joanie. will be my go to person and she will then communicate with the Team (there are approximately 15 members of the team, that is why the confusion.) We also feel we need a local pediatrician in Abbotsford that we can go to, and if need be we will be referred on to Dr. Courtemanche and Dr. Prendiville.

But as far as Kourtney's chronic pain goes . . . there is not much that can be done until her anemia issues are dealt with. There were 8 people in the room with masks, gowns and gloves and Kourtney sitting in the middle. I expressed my concern over this inhumane treatment, especially when there were 2 psychologists present. What does this do to an already depressed child? WE have come up with a plan for family counselling, individual counselling and couple counselling. I wonder where Dr. Phil is when we need him?

It did snow on the way there, but the ground was clear on the way home. Kourtney is still snoring in her room. We are now giving her ativan as she is so restless at night (most likely because she is not getting enough oxygen to her tissues so everything hurts).

We did manage to go shopping!!! We got some pretty cool gifts, it made Kourtney feel a little more like celebrating Christmas.

So. . . If anyone else is interested in writing a letter of reference for us that would be great.

Oh just let it Snow!!!

Kourtney almost fainted last night at Costco she became cool and clammy and could not walk another step. Her anemia issues have now been passed on to a hematologist and we will have to go in next week. It will be just another loooonnnng weekend for us because Kourtney can barely stand up she is so anemic. That is why I am hoping it will snow....then I will feel like the snow is keeping me home instead of Kourtney.

We do have to go back to Children's tomorrow for more meetings . . . we need to establish chain of command and we are also meeting with the pain doctors. I am thinking that they may want to admit her because her hemoglobin is so low. I think if they suggest it I would be open to it, but not to thrilled about spending a weekend in there.

There is not much more to say except how privelaged I feel to be Kourtney's mom. I have done and will do anything for her. She has brought us a lot of joy over the years and I know will bring us more in the years to come. Although this is not the life we dreamed of when we were planning a family, I would not trade it for anything. There are many things that I have had to let go of over the last 11 years, but I do believe my life is a lot richer. The every day stuff (like snow) does not even phase me. I love being known as Kourtney's mom . . . I am her biggest fan. I just feel sorry for the people who can't get passed the disability. They don't know what they are missing. Tammy S and Mona . . . you guys rock in helping Kourtney realize her potential. You have been my solid rocks during this rough time . . . thanks.

Jeremiah 33:3

As devastating as today was, the cultures of Kourtney's skin showed that the superbug is starting to lighten up but that there are some other things growing on her skin.These things on her skin are more treatable with antibiotics. The honey dressings seem to be helping the superbug. She is a host for bugs because her blood levels are so low.

We will now be going to hematologist (blood doctor) for Kourtney's severe anemia issues. The blood transfusion did help heal up her back and unfortunately she lost a lot of blood through all her open sores over the last month, so her body is not keeping up. Her bone marrow is not making red blood cells fast enough, she is getting enough iron but her marrow is tired and doesn't want to work overtime (it is not getting paid enough).

I would have given anything to speak to a hematologist in the summer when we found out Shaelyn was a bone marrow match to Kourtney. I just think it is interesting that now we are seeing one for totally different issues. I don't think it is a coincidence. I think it will give me the opportunity to ask questions and give him the information on the clinical trials that are taking place in Minnesota. I hope and pray that I will be able to convince this doctor that it may be a viable option for Kourtney and that her condition warrants some aggressive action. Please pray for this, it may be the miracle that everyone is praying for.
I can't get Jeremiah 33:3 out of my head....Call unto me, and I will show you great and mighty things....which you do not know. I am praying that we will see some amazing things in the next months to come.....I have to believe that there is something amazing that will happen through all of this. I need for all you to believe it with me. Thanks for all your support and encouragement, I do not take it for granted that there are many people who love and care for our family. Thanks to all of you.

Results

Just got the blood work results. All her counts are very low, even lower then before. I really think there is going to be some aggressive action taken now. Please pray....it is going to be another long haul. I just don't want her admitted. I wanted to believe that things were better but I also knew in my heart they couldn't be.

We had such a rough night last night also. Kourtney was just so restless.I think her hemoglobin has dropped lower than before. My heart is breaking,,,,,Todd is coming home from school to be with me and Kourtney.

NO NEWS . . . YET

Still waiting for the blood work results . . . hopefully tomorrow. Although . . . I have to say it is nice living in denial right now. That is why I haven't called for them. It is kind of nice just having the hope that things may be OK. Kourtney had a full day at school today. She was tired but not exhausted.

The baths are so much easier, but now the challenge is being creative with the dressings. I have been doing dressings all of her life but it seems there is not just one simple way . . . I wish someone could just show me, someone who knows . . . like another mom with a child with EB. There is not one dressing that is the best, so really it is just trial and error. So now we continue with the two hours of dressing changes.

Shaelyn

Since July, I have been away from Shaelyn for over 30 days. My little 7 year old has been such a trooper through all of this. Granted there have been meltdowns and clingy moments, but all in all, Shaelyn has been her happy, cheerful, compliant child. Hot tub times are the times to connect and talk about everything in the whole world, and I mean everything. Zazu (our foster cat) has also played a major role in helping Shaelyn through our crisis. The cat will actually sit on the edge of the hottub when we are out there just so he can be close to Shaelyn.

When Kourtney first got home from the hospital for the 2nd day, her pain was so severe that she was catatonic. She could not even move in bed without hurting. She didn't talk and would only walk to go to the bathroom or to her bed. Her pain was so intense that she shut everyone and everything out. Kourtney was terribly annoyed with Shaelyn. Shaelyn wanted nothing to do with Kourtney and shut herself in her room with a DVD player and watched movies. I knew my family was in crisis yet I was so exhausted to deal with all of this! I so prayed for wisdom in dealing with this behaviour. I do believe God gave me that wisdom. I moved Kourtney into Shaelyn's room. They have always have had their own rooms but for the most part they end up sleeping together anyways. I think the girls were stunned by my action, but I now see that as a turning point in getting Kourtney better.Shaelyn has been the only one that has been able to treat Kourtney normally over the years and they have formed a typical love hate realtionship. I needed the two of them to communicate . . . and for Kourtney to get better she needed to feel annoyed and for Shaelyn to deal with Kourtney she felt a sense of accomplishment in knowing she was annoying Kourtney. The two of them needed each other and needed to fight to regain some normalcy in our home.

I often think we avoid the sibling of special needs children too much. Everyone always feels sorry for Kourtne, yet Shaelyn's needs always come second in our home. She is the forgotten one. I am learning to take time with her and spend alone time with her especially in the hot tub. Wednesday's are our special days, and we look forward to them. Shaelyn's name means gift and I always think of her as that because of her happy disposition right from the moment she was born. She was that to both Todd and I.

I have to remember to listen to what she is saying, because I know that if I don't she will start acting out and seeking negative attention. I just pray that she will always know how much I adore her and think she is such a precious gift to me.

Saturday

This quote has given me a reason to jump out of bed in the morning . . . thanks Shirley.

Live your life in such a way that when your feet hit the floor in the morning, Satan shudders and says . . . ‘Oh crap . . . she’s awake!’ - author unknown-

As defeated as we have been through all of this . . . we are unstoppable.

Still waiting for results . . .

NO NEWS = ?

NO NEWS = good news?
NO NEWS= busy Friday clinical day?
NO NEWS = not critical. (sigh)

Still waiting for blood work results. . . keep praying. Both girls at school today . . . first day in 5 weeks I have been home alone. Kourtney had a good day and was bright. I am going to work 4 hours tomorrow at dialysis. I hope I can remember how to do it.

IT HAPPENED!!

Kourtney's bath and dressing change went with smoothly today. All she had was Advil and Tylenol. There were tears prior but once she was in the water she was fine. We got there at 2 and did not leave until 530. Dr Courtemanche agreed to wait for the blood work results for treating the infection. The best phone call I could get tomorrow would be that all her levels would be within range. I would take that over one million dollars any day.
Last week Kourtney went out to a movie. She noticed Christmas lights and stated isn't it early? She has basically missed out on a full month of her life, because of the pain she was in and all the pain meds she was taking. She seems to have brighter eyes again and Hope that she can get better.

Kourtney's body still has a lot of healing to do, but we have conquered the back, with the honey dressings, which was the biggest area of concern. Now it will take some creativity on my part with her arms and thighs. Patience.....

ROUND #2

Tomorrow we are off to BCCH again....for a bath and dressing change.(yes it will be done) Kourtney's favorite nurse in the world will be there to assist...so she is looking forward to it. Kourtney will have blood work drawn which will give us an idea of where she is at so she continues to heal.

Although her back is starting heal up very well and the pain is much less....her arms broke down today, and they look infected. So now I have to start honey on them also. The plan is......

If Kourtney's Hemoglobin and Albumin levels are low and she needs replacement, I will request an antibiotic for her. Then all if those things can work together to continue to heal her. If her levels are within normal then we will continue on more passively and safely with the honey dressings. Unless...Dr Courtemanche thinks differently when he sees her arms.

Kourtney had a good day at school. I bought her some new clothes, (when you look good you feel better). She even gave a little bum wiggle as she was walking out the door. It was awesome to see that.

I am very nervous about the bath tomorrow as the last time we were in that tub, Kourtney had a violent reaction. I honestly believe I am suffering post traumatic stress disorder, so tomorrow, Kourtney and I will both be facing our fears. She wants to try the entonox (laughing gas). I am praying it will work well for her.

Giggle.

Today, was the first dressing change in over a month that I heard Kourtney giggle during her bath. It wasn't a sarcastic giggle, but truly her little giggle that has been so lost for so long. Are we turning a corner? I would love to say yes, but all I know is I was thankful for today . . . and her giggle.

Tough Love Vs Understanding

Yesterday, Kourtney got home from school and was in great spirits. She didn't even have a nap on the way home, so I am starting to wonder if the pain meds had a lot to do with her sleepy behaviour.

I realize how completely vulnerable I make myself when I blog. I am not blogging to make people to feel sorry for us, or to attract attention. I do it because it is very difficult repeating the same story over and over again. People have a choice to follow the blog, therefore I feel if they are reading they are interested. Furthermore, I think it gives a snapshot of our lives and gives you some understanding into what it is like to have a child with special needs. One of my coping mechanisms has been to put on the front that I have it all together. I usually try to make myself look presentable, (when you look good, you feel better), and for the most part am a bit stoic in my affect. I have learned that I cannot always look like I am carrying a load although most of the time my heart is breaking. I am not looking for advice when I blog but feel honoured that you would take the time to share in our journey . . . the ups and the downs.

Today I receieved two emails from my blog followers, two very different people with two different agendas. The first one was a "tough love" email, from someone who doesn't even live close and I have not even been close to for a real long time. She told me that she needed to help me from drowning and that I needed to get out of my pit because I was dragging my whole family down with me. She expressed to me she is doing this because she loves us and concerned for our family. Her closing line was, "You with Gods help are the only one that has the power to get out of the pit.....my question is do you want out or do you want to continue in this pit......?"

Well, of course I want to get out of the pit, but this tough love aproach from a distance comes across as advice from someone who has never allowed themselves to roll up their sleeves and start help digging you out of the pit. Instead, they throw you a rope, yet they are not at the other end to pull you up.

My next email, was from someone that lives close to me, although we don't talk or see each other often our hearts are bonded as her child has special needs as well. She was having a rough time, and the only person she wanted to talk to and needed to talk to yesterday was me. I felt so priviledged especially after the tough love email. I could not give her words or advice but I could listen with understanding. She needed an outlet and the only reason she called me was because of my vulnerability through Kourtney's journey. I encouraged someone who shares my pain, just by being weak.

I have been humbled during this journey, and yes have been angry, but one thing I know is that they only way that Kourtney's suffering will make sense to me is through my weakness and knowing there is an entire army behind us cheering us on, helping dig us out.

The DAY....

This morning we sent Kourtney to school with Todd!! We got Kourtney up at 0630 and finished the dressings by 0815. (Todd had arranged to go in a bit late to accomodate) By noon Kourtney was doing ok.

Shaelyn has another cold, so she is home with me (she is loving the one on one time with me). She says she dreams of being back in kindergarten when I used to pick her up in the morning and we spent the whole afternoon together. I love having her with me and enjoy the cuddles and sharing french fries and coke with her.

Please pray that Kourtney's day will go smooth and she won't be too exhausted when she gets home.

Apologies....

Before I left for Children's today I got a call from the anathetist, she was overly apologetic for Tuesday, she agreed to meet today with Dr Cautermanche about the plan for Kourtney, I went into Children's and was received warmly by the receptionists at Dr Cautermanche's office. Dr Cautermanche was extremely apologetic and actually thought there was a bath area in the Medical Day Unit. He said that I was allowed to have a meltdown and he could understand why. (amazing what a few days and reflection does). I told them that I am always told that I need to be Kourtney's mom and not her nurse, I told them that on Tuesday I was mom and I turned into mama bear. I guess I really am not as detatched as the professionals think.

So the plan is...for Kourtney to have a bath at Children's every two weeks: for the following reasons, 1. so that they can monitor the healing.2. so the staff can learn how to do Kourtney's dressing changes and if she is ever admited again there will be some staff that are able to help out with the dressing changes. The other issue we discussed is having a no resident policy in place, unfortunately, easier said than done. So the next time Kourtney is admitted, she will be admitted under Dr Cautermanche and then Dr Prendiville (our dermatologist) will consulted for the orders. ( Dr Prendiville cannot write orders because she is not a pediatrician). Before we were admitted under a pediatrician, the pediatricians all have residents that consult with them, and that just proves to be a headache especially in dealing with a complex child like Kourtney.

Now we hsve that figured out our goal is to keep Kourtney out of the hospital. Both Doctors feel that the rules that exist for a child with MRSA (gown gloves mask) are inhumane,and feel Kourtney deserves better treatment than this. They also want to stay ontop of her pain and also get physio for her and eventually some more plastic sugergy to release some contractures. So...always a journey.

Today Kourtney went to school for the afternoon and then to my inlaws for supper....she was tired out by 730 but she was a bit more happier today. Her skin is slowly starting to make a comeback and I received more medihoney dressings today and showed Dr Cautermanche pictures, he was very impressed with the healing. Kourtney took a look at the pictures also and was very happy with the results. It encouraged her that she was healing and there is hope for her not to live in so much pain.

I am going to go watch 24 with my husband. Toodles.

Normalcy

Tuesday, put me over the edge...

When I first arrived at the hospital I spoke with the nurses that help with the burn baths, they said there was no way that they could help with Kourtney's bath. I was directed to go to another area, and a smiling nurse greeted me and said, "We have the room ready for you." Hmmm I thought this was too good to be true. As fate would have it . . . it was. I asked about the bath tub and she had no idea Kourtney would need a bath. She told me I could start taking Kourtney's dressings off and then they would page the doctors to come in and have a look. (Kourtney's wounds are so extensive that she needs to soak in a tub for at least 20 minutes to 1/2 hour before the dressings can come off). I felt this sensation come over me . . . I was so humiliated, overwhelmed and in disbelief. I was so numb, all I said was I am taking her home....and I left.

As the numbness began turning into this overwhelming feeling of rage I phoned the Dr's office and thanked them for screwing up my day. (I phoned back the next day and apologized). I called Todd and he tried to get to the bottom of it, but because I left I was the one who was in trouble. So I got labelled . . . as a burnt out mom that needs counselling. Like all you blog followers haven't figured that out yet. The plastic surgeon went so far as to call our Abbotsford Pediatrician. I am not sure what was said, but I gather it was some choice words. But to tell you the truth, I didn't care. I am and will always be the best advocate for my child and I will not let the medical professionals put Kourtney through more pain just because there isn't enough staff, or because she is being "fit in" to accommodate Dr's busy schedules. I was told by the anaesthetist (from the chronic pain management team) there was a lot of rearranging of schedules that happened to see Kourtney that day. (As maternity nurses know, anaesthetists are always just fitting people in.) I fiercely retaliated that one.

Anyways, I ended up going to Dr. Traverse today (the Abbotsford Pediatrician). He told me I cannot fall apart. He told me that I should go back to work. The one thing that has kept me from falling apart is my work. If there is one thing that has kept my head clear, it is my job. I love the people I work with and am really excited about going to the new hospital. I didn't think I was mentally capable of going back. He couldn't give me advice about Kourtney but feels that her care needs to be at Children's and I have to stay part of the team, and not do what I did yesterday. So I have to go back to Children's on Friday and speak with Dr Caurtemanche and try to figure out the best way the team can communicate and stay connected, so what happened on Tuesday doesn't happen ever again.

So Friday...I am going to go in to Vancouver all by myself, Kourtney is going to go to school for the afternoon and Shae has a pro-d day and I believe she will spend that day with Grandma (Bev, I think I asked you but if I didn't let me know). I may go spend some time downtown . . . and just clear my head all by myself . . . I need to find the strength to move on and accept this new stage of Kourtney's disease. Parents with special needs children are in a constant state of grieving the process (my dear friend Shirley understands this and reminds me that I need to smile during the storm). Kourtney's infection has left me stuck in the denial, and anger phase. I need to once again find it within myself to accept that this nasty disease is way beyond my control and I can only do so much to help her. At this point I am useless to her because I am tired and traumatized by what I see every day. I have to try to find normalcy again and get into my regular routines of exercise, going back to work and being a wife and a useful mom to Shaelyn (as we are speaking, I just burnt her breakfast). I have fallen apart, and now after talking with Dr. Traverse, I have to get back on track for Kourtney's sake especially. Blogging has been the best way to put my feelings out there and describe the pain and anguish that we go through. Janelle is moving on . . . my heart is still heavy for Kourtney but I have to remain strong. I have to tough suck it up.

Thanks for all your comments . . . really your encouraging words give me strength to get through every day.

Kourtney continues to be very weak, but her back and skin are healing up nicely with the Vaseline, tea tree oil, honey and daily baths. Her baths get better every day, and I am just so thankful that I have Mona. She has been my best advocate and can make Kourtney laugh even during the most stressful times (she witnessed the event on Tuesday and drove home for me).

Janelle is coming back and still praying that Kourtney will be on the road to recovery also.

#!@##!!!

Went to Children's....wrong room booked, no bathtub to do the dressings. I left feeling numb. Just wondering when the nightmare will stop.

Off to Childrens (again)

Last night I woke up in the middle of the night to find an email from my Manuku Honey guru, Ann. She sent me a testomonial for Manuka from a 22 year old girl with Kourtney's type of EB. This lady showed pictures of her back. I had seen this picture about a year ago, and was thankful that Kourtney only had a few spots on her back. Since the incident at the hospital when Kourtney's back so ripped up during a bath, this picture has been in my mind, and what has driven me to find something to get Kourtney's back into a semi normal state. Seeing this picture and comparing it to the ones I have been taking gives me a lot of hope that Kourtney's back will be healed.

Today we will be going to Children's for a dressing change. There will be many doctors around that want' to view the progress Kourtney's back.....! Kourtney is terrified and to tell you the truth so am I. I have spoken to Kourtney about her options for making this dressing change work. Our first option is giving her laughing gas as she is entering the tub and as her dressings are being taken off. If this doesn't work and she is hysterical we will than give her medication to lightly sedate her. Pray that she loves the laughing gas. I used the gas when I had both my girls and have incorporated into my practice as a maternity nurse and with the same outcomes for the most part. A loving relationship develops.

Just pray that their will be enough healing in her skin and less signs of infection and that she won't have to start on an antibiotics.

Blown Away . . . Again!!!! (Todd blogs)

Through it all I have been going to work, doing my job, loving kids, singing songs, playing games, sometimes on only a few hours sleep and with the constant worry of all that is going on at home. I love my job and have been at a great school (Alouette Elementary) for ten years now. I've always put up a strong front that everything is fine at home because for the most part we have managed pretty well. But the tough times we were having with Kourtney came to a head just before school began in September and since Kourtney was a new student at my school our lives became quite a bit more transparent. It is obvious to staff that things are not right when I arrive at school alone and I have started to open up more about the struggles we are going through.

Different staff members have had their classes sing songs (see the blog archive), make cards, and write stories to Kourtney. Different staff and students have simply passed on a 'hello' to Kourtney. Last week the staff fridge and freezer were full of frozen meals, enough to last for several weeks! More people were willing to give but our freezer at home was full and I had to spill over to my parents freezer.

At Alouette, the staff have a top secret way of signing cards for other staff members. They send a student from room to room and make sure all the staff have a chance to write on the card. I've done this many times but today it was my turn to receive a card. I waited until I got home to open the card and gave another card they had prepared for Kourtney. We couldn't believe our eyes when we opened Kourtney's card and saw $70 in iTunes gift cards! (Kourtney loves her music & you'll hear more about that in the near future.) But when Janelle and I opened my card we saw what I can only describe as a ridiculous amount of money along with a card of encouragement. One of the notes said, "Hope this helps with the cost of the dressings." It will!!

All this while we have been thinking about switching Kourtney back to Abbotsford as the renovations to the middle school will be complete in January. However, after opening the cards and seeing the response of my staff, Kourtney's staff, we will be staying right where we are. I told Kourtney that in Abbotsford she would have a caring TA and her friends would be near, but at Alouette she has a family who cares. Everyone from the principal to the custodians and everyone in between has taken an interest in Kourtney. We would be crazy to switch schools now. I just can't wait for them to know the Kourtney that Janelle and I have known for all these years.

So to my friends at Alouette, THANK YOU!!! Who knows, maybe I'll be at Alouette for life like a few of you.

Thanks for reading the blog.
Thanks, Darryl, for telling us about Analytics.

Blown Away!!!

Today was a better day for Kourtney. She was her perky self during the half dressing change. I had peace today....thanks to all who are praying. I found out some even more amazing news read on!!!
Making a difference - Our World

Comvita and US woundcare partner Derma Sciences,

donate medical honey dressings and products to DebRA,

an international charitable organisation supporting the

Butterfly Children - sufferers of Epidermolysis Bullosa (EB).

These children are born with skin as fragile as a butterfly’s

wing which can blister at the slightest touch. Normal dayto-

day life can cause constant pain and scarring, which, in

the worse forms, leads to eventual disfigurement, disability

and often early death. EB cannot be

cured, however Comvita’s medical honey

is proving beneficial for healing lesions with

minimal scar tissue. DebRA provides specialist EB

nursing, funds extensive medical research and provides

counselling, welfare, respite and advocacy. Comvita’s

Medical team in the United Kingdom are also supporting

DebRA in a volunteer fundraising sporting event.

TO TREAT OR TEATREAT

Last night was a sleepless night for me. The little blue pill that I take to help me sleep also makes me feel groggy the next day. So I did not want to take the little blue pill last night. I laid awake with a knot in my stomach praying that we would feel peace during this storm. Kourtney slept but was restless in her sleep. I finally woke Todd up at 0530 and cried my eyes out. He was supposed to play at church this morning but I needed him home with me for the dressing change. I also paged Kourtney's Dr to see if he could access the swab results from Wednesday. He was at home but thanks to technology he could get the results at home. Much to my dismay, the MRSA was at a +3 on Kourtney's skin. (the results are light growth-plus sizes). This means it is infecting the skin again. So, now we have to make a very difficult decision......we either either have to put Kourtney on stronger antibiotics or start doing dressings every day and treating her skin with the tea tree and the honey dressings (what we are doing now but every day) each option one will lessen the infection but will not take them away. Antibiotics would expedite the healing but would cause further resistance. The more natural passive way will require many dressing supplies and a whole lot more time and patience in the healing process. Big decision, the one thing I can say is Kourtney's pain has lessened in the last week once the dressings are on. This means the honey is working at decreasing the inflammation.
So.....the plan for the week is to go to Children's for a dressing change so the Plastic Surgeon can take a look, swab the areas that were swabbed last week and since have been treated with honey and see if there is a change. Pray for patience and peace that passes all understanding......that is what we need. If we did not believe in a sovereign God I know I could not face the day, but because God's ways are His ways I face each new day with courage.

Kourtney is so tired of all of this also.. Todd and I did the dressing change and then took Kourtney to church at her request.She stayed awake and even wanted to go our for lunch. She is very tired now but hasn't had her usual sleep. We are now on disc 2 of Hardy Boys and Nancy Drew. Wow!!

Thanks to all for your interest and prayers for our family. We know that when you read this blog you are interested and concerned for our family.

TEA TREE OIL

I posted a link to an article about TeaTree Oil and Manuka Honey. During the interim that we were waiting for the honey dressings to arrive, I began using tea tree oil as a topical antibiotic for Kourtney's skin. The "Beef and Cheese Smell", as described by Shaelyn, was getting a bit overwhelming, especially after leaving the dressings on for more than two days. I put it in her bath last Saturday for the first time and than concocted my own mixture of vaseline and tea tree oil. I actually ended up taking off all the fancy silicone dressings on Kourtney's extremities and taking gobs of vaseline with teatree oil and putting them all over her body. This is much to Kourtney's delight as she gets very itchy. She actually purrs like a kitten when we glob and smooth it onto her skin. It always makes me feel satisfied that I can give her some relief to all her pain. The dressings didn't stick or shift underneath and with the help of the tea tree oil Kourtney's extremities are starting to look less inflamed, although she leaves an oil patch wherever she goes (hospital soaker pads help a lot). While Kourtney first had an episode with this infection I used vaseline but it didn't lift off the infection like the vaseline and tea tree oil does. She can move her arms better and she states relief from them.

The most amazing part of all of this is that usually chlorine is the number one choice in bathwater to kill off bacteria. Every summer Kourtney's skin did amazing because of all the swimming she did. This year that didn't happen, I thought it was because we changed from a chlorine pool to salt water that her skin wasn't improving. Todd got the water tested religiously and assured me that the chlorine in our pool was higher then most salt water pools. Bleach wasn't working, it was just leaving Kourtney with a red rash on her body. Nobody at Children's had any other suggestions, until I phoned Sick Kids Hospital in Toronto. They said that they used vinegar in the bath water. I started using vinegar with great results, but the sting was horrible for her. The smell of vinegar and honey gave Kourtney the sweet and sour smell. She could smell it and it was making the dressing change a lot less desirable for everyone. I had talked to one Dr. in the UK about tea tree oil and an Australian intern concurred that it was effective in treating infections. It is much more soothing for skin, it is an oil for it gives her skin moisture, plus it can be used topically, plus...you can buy it a COSTCO. (for those that don't know me I am the Costco expert).
What is amazing to me is now we find out that tea tree oil and manuka honey are very similar to each other and their sources are similar (see the links on our blog). We are trying not to use antibiotics on Kourtney as it really makes this bug worse and more resistant. Patience and rest are going to be the words. I want to outsmart this nasty bug that has invaded my little girl's body.

ZAZOO!!

Over the past months the stress in our house is palpable when you walk through the door, but there has been one being that brings a smile to our face just with his presence. It is our foster cat ZAZOO. Zazoo started visiting us in the summer in our backyard dining area. We thought of him as a pesky cat that just was scrounging off of us to enhance his already robust shape, but soon we, especially Shaelyn, would wonder where he was if he wasn't at our table. He soon became our family's alarm clock arriving around the same time every morning, leaving while the girls were at school and coming back when Shaelyn would return. We phoned the owners of the cat, they assured us that this big-eyed black cat came home every night and as long as he wasn't being a pest they didn't mind that we would take him as a foster cat. Todd and I smirk at the thought of having a pet, but not having to feed, and look after the kitty litter. (when he has to go, he waits by the door meowing patiently.)

This cat has brought so much joy to our family. (I am a non-cat lover) but this cat has brings us smiles. I do believe that God brought us this cat as a comedy relief for our family and to give Shaelyn a distraction. I can't help but smile when I think of how a cat could bring us so much joy!!

SO.....Anyhow.....

Just in case you are checking in....we still don't know the results of Kourtney's, Shaelyn's, Todd's or my swabs yet. This will just be another long weekend wondering how to best manage Kourtney. Today we were thankful for the very nice relaxing bath Kourtney had without the strong medication. She was very brave and wanted to try her bath without it. We did things a bit differently so she wasn't in as much pain today.

My dad is leaving early because he came down with a nasty cold and doesn't want to infect everyone around him. It is kind of unfortunate, but I think it will be the best as he did not want me to have another patient on my hands.

Yesterday we took a huge leap of faith! Westjet had some smoking deals to Hawaii starting the end of January. We decided to book as it was a one day sale, (the cost was less than a trip to Saskatchewan). Westjet has a really great cancellation policy so if anything happens we can cancel. We just booked our flights as the hotel will take some time to find the best deal.

Specific prayer requests.....pain control and healing of Kourtney's back, also strength for myself as I am totally burntout. At this point the dressing changes are very traumatic for me as I have to talk Kourtney through them and it becomes a 3 hour process. Blogging is a good source of unwinding for me, I am just happy to leave my thoughts on the computer.

Back from Children's

Shaelyn ended up being home today with a raging fever. Bev took her to the Dr's and he said her throat was very red, he did a swab, we will know the results tomorrow. All of a sudden Kourtney's intense pain was beginning to make sense. We have been so consumed with the MRSA that I forgot that she may have a strep infection.....which she usually gets from someone in our household. We have been struggling with strep infections for years in our household. I have my tonsils out, so Todd and Shaelyn are usually the culprits, but this time I am not sure. If this is what is causing Kourtney's back pain, it would give me some relief knowing that antibiotics would work on this, and would give me an understanding of her intense pain. We will know tomorrow.

So...the plan now with Kourtney is to get her pain under control. We will increase her pain meds and also give her medication to make her forget her dressing change. (She is so distressed to see her skin the way it is and I feel it would help her not to remember her dressing change.) We used this medication during her dressing change in the hospital and although she is very groggy after I think she needs a break from seeing her skin. (I would like to take some also). The medication she is taking is actually the "date rate drug" so it is not easily accessed through a pharmacy. We will have to keep it locked up. The pain doctors also really want to get better supports for Kourtney at home for seating, wheelchair accessibility, etc.

As far as her anemia issues, it will all depend on her bloodwork, which is very difficult to obtain, and then a hematologist will be consulted. We just pray that Kourtney's bone marrrow will kick in and start producing red blood cells....which will make her feel better. 

So.....a few new things to try. As it was explained to us getting her pain under control is first and foremost, and then we can start getting Kourtney back into school, which will help get her mind off of herself also.

I will blog more in a bit. So You Think You Can Dance Canada is on . . . I have to go!!

To Kourtney - from Alouette Elementary Div 5 & 7

Come back soon, Kourtney. We all miss you!

My DAD

Being home isn't all that it is cracked up to be. It is very difficult trying to manage Kourtney and life. I find it difficult getting out of bed in the mornings and facing the day. I wake up with this nauseous feeling every morning and can't believe the roller coaster life has taken us on. The everyday events and complaints of the day make my head spin and all I want to do is sit in a corner with my hands over my head.(you probably have had days like that but just can't admit it). Mona (our caregiver) took over the bath yesterday, it was so freeing. We tag team the dressings so it cuts the time in half.


My dad came yesterday (early), today I don't feel as bad, Kourtney seems to have a bit more spunk. She just fell asleep in the recliner chair.

If I can give you a little glimpse into my life for a bit I will share it with you. I have been trying to get a hold of the MEDIHONEY and dressings for over a month. I finally received some samples through our pediatrician in Abbotsford. I brought them into Children's Hospital and sparingly used the supply with fantastic results. Everyone was impressed with these dressings, including one of the specialists that deals with infections. He told me that they were actually considering an IV honey for kids with cystic fibrosis. The dressings were ordered the day we came in (originally I asked for them Oct 8th). We waited for them. They were supposed to arrive November 10, and on Wednesday I got a call from the doctor's office saying that they would take 2-3 weeks to get them!! So far these dressings have been the only thing that has kept the infection at bay. So I emailed the supplier on Wednesday and had them shipped to me today. I had given the name of the supplier to the Dr but I the message didn't get to his receptionist. The only problem with me doing it is that I have to pay for it out my own pocket, and will probably have a fight on my hands for reimbursement, and like everything else these dressings are expensive. Yes I know I am venting. . .it kind of feels good.

Kourtney's fevers have subsided but she still has a lot of pain and no energy. I don't know if the blood transfusion helped or not. Her skin needs the honey dressings to help it to heal. So tomorrow will be the big dressing change.

While Kourtney was in the hospital, our much anticipated and talked about hot tub arrived. I love it so much. I feel so relaxed when I go in. Last night brought a smile to my face when I had to call my mother in law Bev and tell her that her husband was not lost. He was at our house sitting in our hot tub with a huge grin on his face. My dad was in there also, being splashed by Shaelyn.

Right now Kourtney's overall condition is a bit grim. I have to be honest. Her body is in a constant state of healing and repairing itself. In order for it to get better she needs the necessary proteins to heal, so keeping up is very difficult. It scares her to see her skin like it is and very difficult for Mona (caregiver) and myself to see it like this. We have gone back to a daily regime for arms and legs and are planning to keep the honey dressings on her back until the smell becomes overwhelming or until Thursday when we take her in to BCCH for another dressing change. Just pray the odour will subside. I do believe the smell can be avoided by using tea tree oil in her water.

My prayer is for Kourtney to be restored to the spunky 11 year old she can be. Watching a child in pain is very difficult, and although Kourtney has dealt with a lot of pain over the years, this is the worst it has ever been.

I know that those who are reading our interested. I certainly appreciate the interest and support we have received. Thanks for being there somewhere in the cyberworld for me!!!

MANUKA HONEY

On Sunday Kourtney's fevers persisted. They were coming one on top of the other and advil wasn't lasting long enough. I was laying on the couch, when this lightening bolt struck me. I had been giving Kourtney Manuka Honey in her gtube and had stopped just when the fevers started. I also had her on an antibiotic during that time so I thought that it was working. I found out in the hospital that she is actually resistant to that antbiotic. So it hit me that it was actually the Manuka Honey working for her. So I gave her some......no fevers in over 24 hours now. She has not been on antibiotics now for over 3 weeks.

Kourtney is still very sore and very weak. Please pray for patience and wisdom in getting this child better. She told me that going back to her school with her friends would give her a reason to get out of bed in the morning. I am giving her realistic goals to look forward to. One day at a time.

Janelle

HOME TO STAY......

Last night was a very rough night for us. Kourtney was restless and fearful. WE medicated her and it still didn't work. She woke up and sat on the couch pale and listless. She began shivering violently and became very sleepy her temp was climbing......it scared me. We gave her Advil and Tylenol and in an half hour she was on the computer talking on Skype with her Saskatchewan Grandparents and got an facebook account for my mom in law. Perky little Kourtney was back.

She is now resting on her new recliner chair, actually she is snoring. The effects of her new pain meds make her relax. Sleep is good for her. This morning when I was getting her dressed, I made her look outside and look at our amazing backyard, and think about the fun she has had having a pool, I want her to look forward to her Grandpa coming out to visit, Christmas and going back to her old school with all her friends. Kourtney needs something to live for. She needed her uncle to tease her this weekend. She got him back by buying a movie with his account number from iTunes. She needs to be normalized into a very abnormal life. She can't be felt sorry for, she needs to be embraced and treated like every normal 11 year old needs to be treated. She has an awful terrible disease but underneath is a strong willed, sarcastic, perky child.

This morning I talked with Kourtney's plastic surgeon at length. He was very aware of my frustration yesterday and was not sure what to do. He told us to stay home. I told him I wasn't managing well at home but by being at the hospital I wasn't dealing with all the issues at home. I have to stay strong and try to balance life plus look after Kourtney's needs. Emotionally, I am weak but I know that the strength will come again. We are going to see him once a week at the hospital and do her dressings there. I would feel better if someone was helping me evaluate all of this. He agreed. He hoped that Kourtney trusted him and she felt comfortable with all of this. I know that Kourtney does because I do, she can tell who I trust and who I don't, just by the look in my face. So if you ever want to know what I think of you just ask Kourtney because generally she can nail how I am feeling.

A lot of people ask about the Bone Marrow Transplant that we were so HOPE ful for. Right now it is on hold, I have no idea what is going on with the research either, as I always hear conflicting stories. There still is a part of me that feels hopeful that one day it work for her. Maybe that it just a mom being hopeful, but I truly believe that down deep that God is going to work this out for Kourtney. I don't know how, I don't know when but I do believe that this will happen. I don't think it is a coincidence that Shaelyn is a match, I just believe it will be God's timing. I just have to continue to be faithful and rely on the strength that only God can give me.

I just heard the song, Mighty To Save. I love the line that God can move a mountain. I sing it to Kourtney and instead of singing move mountain, I sing "cure EB". She smiles and than tells me I am weird.....I love it when she is perky like that.

She is still sleeping, I am hoping she sleeps tonight.

Janelle

Home

Just to let you know.....we are home on a pass for two days. The plastic surgeon looked Kourtney over and although her skin isn't that great, she doesn't have any signs of active infection. Her skin was getting worse in the hospital, just being in a different environment. We will see how she does and hopefully we can stay here. It was so hard being at the hospital when I know I can manage her bettter at home.

Although I am happy to be home I still feel overwhelmed by this all I don't know if I am still ready to take this whole thing on again and try balancing life along with it. The dressing changes are emotionally and physically exhausting for both of us and she requires help with almost all of her activities of daily living. She has gone from a vibrant happy child to a very debilitated flat child. I still think I am in the denial phase of the grieving process, but it is going to take some time for me to move on as it is loss of another dream.

So...we are home....Janelle

Madagascar and Lululemon

Frustrating day turned into a wonderful day. Kourtney's dressing change was put on hold today because the appropriate dressings had not arrived. This is day number 3 for the dressings, so the smell was pretty bad. Shaelyn kept saying she smelled beef and cheese. She was blaming her uncle for that and he was quite willing to carry that because everyone knew that the dressings were on for a day too long.

We went to Madagascar and then hung out in our 5 star hotel. Kourtney decided she would try to use the revolving door with her electric wheelchair. It was quite the site as she ended up getting stuck in there and the concierge was trying to get her out. Wow my family is not made for luxury at all.

I have a new friend. I could not believe how she understood how I felt. Our circumstances are different but yet the feelings of helplessness, mourning, alienation and lack of understanding are very much the same. It gave me great a different perspective in how I am feeling and I thank her for that today. (we went to Lululemon and bought matching jackets, boy was I thankful I bought a jacket as it poured rain. Kourtney got a hoodie from Lulumeon today also, she was so thrilled with it.

Tomorrow we should get rid of the beef and cheese smell. (Shaelyn will be the judge of that). Please pray for Kourtney as the dressing changes are incredibly nasty for her (and for me). Her anxiety is so huge, pray for her to relax. Today I was ready to take her home as I am really tired of doing the dressings when it is good for everyone but not for Kourtney. She survives on routine, I really need to get this established if we are going to be a long time. (Looking like we will be here for awhile)

Just so you know....someone from Canuck Place came and talked to me. He said that Kourtney didn't meet the criteria for Canuck Place because you have to have a terminal illness. He said he had talked to our doctors and they really feel that it is not terminal it is going to take patience and time for this "bug" to disappear. I always wonder what the "word" is between the docs, I am just glad to know that they feel hopeful that she will kick this thing.

I love getting emails, please don't stop sending them it encourages me so much that people are reading the blog and interested and praying for Kourtney and the rest of our family.

Long Day

Kourtney woke up around 10 am yesterday. She was miserable and in a lot of pain. I ended up doing her dressings (against the plan), but I knew that they needed to be done because there would have been no way that she would have gotten through the day. Turned out to be a little bit of a disaster.

Although we are seeing signs of improvement, the road to recovery is going to be long. I need a lot of patience. Kourtney and I were very discouraged afterwards. Thanks to Mona for being there and helping Kourtney get through and helping me with the dressings. She is truly a gift to our family.

After all was said and done our dermatologist came in. I sometimes don't know how to take her. I keep hearing that this infection is very hard to get rid of but for some reason it just disappears. She was very encouraging yesterday. It just takes time. I just have to learn how to outsmart it. She is going to look into getting some Apligraft which is a synthetic skin. They have been using it in the USA on kids with EB. She is going to a meeting in Texas and will talk to a doctor there that has used it.

Today my bro will come for a visit. Just pray that Kourtney's back will feel better and she can enjoy the day. She has been on around the clock pain meds last night.

Janelle

RESTING

Kourtney had the best sleep she has ever had in a long time. She is still sleeping. I know she needs the rest.

Yesterday, Kourtney and I spent time alone with the psychologist. We are working on ways to make Kourtney's baths easier. The other day she observed the dressing change so she had a huge understanding how difficult it was for her and for me as a mom.

After that Kourtney and I watched two movies and had a quiet evening.

We also received a letter of apology from the doctor that prescribed the medication that gave Kourtney a violent reaction. I felt that there has been closure to this and now have to put the whole ordeal to rest. We requested a letter of apology, just so that we could feel that she understood how much trauma our whole family faced during this time.

Today I feel a little overwhelmed by everything. I need lots of prayer. I sometimes feel like this load has been mine to carry for so long, everything about Kourtney we have learned through trial and error. Reading my past blogs I have realized that there always has been some kind of obstacle that we have had to tackle over the years. This is the biggest one because we are in the hospital again (Kourtney's longest stay before all this was 9 days when she was 2). The doctors are quite concerned because of the open area on her back that doesn't seem to be healing, and all the other open sores on her body that the infection ravaged through. Really, truth be told, we don't meet the criteria for being admitted, but because one doctor finally took us on we are are here, and I feel I don't have to do this alone. Our plastic surgeon is quite willing to play quarterback for us and help us get through this. I feel relieved that I am not on my own with this any more. In 11 years this is the first time that I had to ask for expert advice, most of the time I have gone through these crisis's on my own and have told the doctors what Kourtney needs. I remember when Kourtney was first born I brought her home from the hospital, I just had this sick feeling about the responsibility of caring for a child with high needs. I don't think anything can ever prepare yourself for watching your child suffer. The psychologist says I am detached. . . yep, I probably am, but it is a defense mechanism. Yesterday, I just laid with Kourtney on her bed and watched movies, she wanted me right beside her. I think that is why she slept so well, she needed me just to be her mommy not her nurse. It was nice.

Oh dear, after all this rambling, she is still sleeping. I am not going to disturb her.

I still haven't been able to apply for employment insurance yet because my sick time bank has not been emptied. I have been phoning my manager over the last two weeks and have not heard from her. Today I phoned the old manager and told her I needed this solved so I can get paid. Thankfully, I was able to talk directly to her she was going to resolve this. Please pray that I get paid my sick time and than I can get paid through EI (which will take 28 days). Just another thing to irk me, especially when finances are the one area that we have done well with. Just another control issue that I have to leave with the Lord.

Sure looking forward to seeing my bro tomorrow and Shaelyn.....she is going to take two days off of school and spend time with me here and at the hotel. I do believe Madagascar comes out on Friday. We are going to that with Kourtney!!!!

I love getting emails!!!!

Post Transfusion

Last night Kourtney got her blood transfusion. After 3 missed IV starts, she was fit to be tied by the end. She was very restless last night as she was getting it and woke up very sweaty. Today will be a quieter day. The psychologist will talk to Kourtney and I individually today. The dressing changes are being done only every 3 days. It really is nice not having to face that mountain every day.

We can not believe that last February-July, Kourtney did not have to wear any dressings at all. Now almost every area requires something. This infection has outsmarted everyone. I am just hoping and praying that we will find the a good plan to outsmart this bug. Eventually we are told that it will simply disappear. We are praying that it does.

We are using the honey dressings. They are soothing and healing. Just pray that they continue to work really well. It is just going to be a long couple of weeks.


Janelle

Decision 08....

It ended up that I didn't go to the meeting...that is ok though. I am happy though that the right people were there, pediatrician, plastic surgeon, dermatologist, and hematologist. I knew they were all on the same page. What they decided.....was.....

- take a close look at Kourtney's nutrition via bloodwork, to make sure she is getting adequate nutrition.

- blood transfusion, to bring up her Hgb and help her heal.

- Stay until the wound on her back heals up (yeash....2-3weeks).

- at this point the professionals don't feel she has an infection. Her wounds look clean, but she just has so many of them that we'll have to monitor it to help her heal.

My brother is coming on Wednesday with his girlfriend, they will be staying in seperate rooms(just thought that may need some clarification)  in a hotel in Vancouver. Kourtney is allowed out on passes, so we will be able to shop in Vancouver.....Lululemon here we come.

Two funny things....sense of humour is important at times like these.

First of all daylight savings time. Shae and I stayed in a hotel. I forgot about the change in time, so we are all ready to go and start our day at 0700 am. Shae and I were ready to hit the town and go out for breakfast.  Downtown Vancouver is pretty  dead Sunday  morning and to make matters worse most of the stores did not open until 1100. You could tell that the two of us were from the country (Abbotsford). Both of us somehow forgot to bring socks, both of us had blisters on our feet, so we had to buy socks and bandages. I felt like a street person with her daughter on Robson Street putting socks on. We both felt like we were walking on clouds after that.  That was a long morning for the two of us.

Second of all my dad my sweet 71 year old dad is coming out to spend time with us in two weeks. Now picture this. He can only stay for 8 days instead of 10 because he has to be back for his mom's, yes his mom's, 100th birthday. It gets better......my grandpa is 105 and they have been married for 78 years (not sure, it may be more). They just went in the nursing home last year.

Ok maybe not that funny. I thought it was.

Some things that may help pass the time are....You Tube Posts. Kourtney loves The Church Office. We have internet access in our room.

Anyone reading a good book, and want to lend it to me?

Prayer requests......

Healing, rest and comfort for Kourtney and for myself.

Todd and Shaelyn, as they try to make do without Kourtney and I around.

That Kourtney's back heals up well, and that she makes a full recovery. 

Janelle

They will be giving her the blood transfusion in the next couple of hours. Pray that it all goes well.

Kourtney Update 2

We are still at Children's. Just to update you......

As of yet Kourtney has not been transfused. Friday was a very frustrating day as there was a lot of miscommunication between the residents (the student doctors) and the doctors that I spoke with to get Kourtney into the hospital. Decisions were being made based on lack of knowledge and experience with  Kourtney's chronic illness. I had a meltdown and sent these poor residents out of the room with their tails between their legs..

To make a long story short. We are having a multidisciplinary meeting tomorrow to see how we can best treat Kourtney. Keep praying.

Kourtney Update 1

I am so glad we are here at Children's, I feel a sense of relief knowing that this time we are in great hands. So here is the scoop. Kourtney's Hemoglobin levels are extremely low (Hemoglobin carries Red Blood Cells to your body, low levels make you tired, heart palpataions and decreased resistance to infections). So...the solution is iron supplements, Kourtney has been on iron on the maximum dose of iron supplements, not working because iron can't be absorbed when there is an infection. THE VISCIOUS CYCLE. So they will look at her blood work tomorrow, and prepare to do a blood transfusion with IV iron which will be better absorbed with the blood. This should make her feel more like my perky Kourtney, plus help bring healing to her body. I really would love to see my perky Kourtney back. I know a blood transfusion......icky but as a dialysis nurse I have seen the benefits more than the negatives.

Everyone is quite excited about the honey dressings, tomorrow we take some of them off. I peeked tonight, wow what a stench but underneath was some amazing healed skin, please pray that her back will show the same amount of healing.

Specific prayer requests would be.......Peace in my heart. Peace for Kourtney and healing. Thanks for taking time to read this.

Toodles, Janelle