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.