Yesterday was the day I was expecting life to fall apart again for us. The EB we know doesn't usually give us this much breathing room. As much as I tell myself "not to worry" it has become embedded into my mind to have a life filled with crisis.
In my 2 recent reading of articles about EB, I have read that death can occur from cardiomyopathies.(translation, heart problems, valves as well as the heart muscle can become large and weak). As many of you may remember, this was a huge area of concern for the doctors in November as Kourtney's heart was as she would described was pounding and beating really fast. She fainted many times as well would go ashen white. The cardiologist was concerned that her heart was enlarged from the last echo cardiogram that was done a year prior. One of the doctors wrote cardiac failure on the notes.
Yesterday we had a followup appointment with the cardiologist. The traffic was fine on the way in which always makes a dreaded trip a little more manageable. I was so nervous, but Kourtney reassured me that her heart was fine, and was angry that she had to go to the hospital. Once we arrived I wish we had a tape recorder, because it is always the same explanations about Kourtney's skin, how much pressure, will I hurt her? and usually "aww poor girl". After 15 years one would think that would become easier but once again it makes us realize that "normal" to us is abnormal to anyone who comes into contact with Kourtney. The appointment went well, it always helps Kourtney when there is a cute resident that spent a lot of time trying to figure out Kourtney's cardiac history (because in fine Children's hospital form there were no records that the cardiologist saw us in November). Kourtney is always able to express herself so well, I fill in the gaps where needed. Her heart is * normal*. The pounding fast heart rate has been corrected and there has been no damage.
I had a long talk with the cardiologist about the reasons why cardiomyopathies occur with children/adults with EB. He has studied this as well, so he assured me was that usually it is due to malnutrition and not absorbing the micro nutrients needed for heart function.( so in November Kourtney was well on her way for heart issues). WE saw Dr Cautermanche later he was patting himself on the back for being the superhero and ordering the micro nutrients. He said it took an old plastic surgeon to figure it out. We thanked him over and over again. You would think being a surgeon he wouldn't need so much affirmation, but this guy seems to. (sorry to the men out there but I have to remember that despite the letters behind his name he is still a man).
My mind could not stop thinking about Kourtney handling the conversation with the resident, coupled with a few incidents and conversations I have had with her last week. As much as I want to take credit for this resilient, self confident, bright child, I am going to step out and say "she has raised me well" She has made me realize what a selfish life I led, prior to her birth. She has taught me that beauty comes from within(and that is not a cliche),face your fears, and pain is a perception. (I had a hang nail, and complained how much it hurt- she said "poor baby"- it didn't hurt so much after that). We feel that Kourtney's life as well quality of life has taken on a new meaning. Yesterday it was made very clear that Kourtney's life was spared, because God has not accomplished everything through her that needs to be. We don't know what that looks like or how long we will go before another crisis ,but we need to live each day, knowing we are not in control. We live each day knowing we are in the centre of God's will. It is a beautiful place to be.
Wednesday, April 24, 2013
Tuesday, April 9, 2013
Nothing stops cross border shopping
Sorry I haven't updated the blog for awhile. Our normal life has gotten in the way of putting down my thoughts. Yes, I said normal . . . life is good!
It has now been 10 days since our return from Arizona. It was great! Pictures to follow.
Today was a tough dose of reality as Kourtney needed to have routine followup bloodwork done. Kourtney and I both felt that there was nothing to be concerned about, however, we both realize how the procedure can spiral downhill so quickly. So bloodwork was ordered for 3 months after the last set was done in January.
After the "hack" job we endured in January at Children's, Dr. Coutemanche suggested we try our local hospital to get her blood drawn. The best of phlebotomists (lab ladies, pokers whatever you call them) came to help, but nobody could get a sample from Kourtney. Kourtney screamed the hospital down. She said the pain was unbearable. Thankfully, getting the blookwork was not "urgent" so now we are working on Plan B. Arghhhhhhh........
Generally Kourtney and I are so worn out that we can't function after an event of the this magnitude. However, after a hug and a pep talk from Angela, Kourtney clearly stated the plans of cross border shopping would not succumb to the trauma of the morning. I was a bit apprehensive about taking her but Shaelyn was off school, and as it stands, nothing gets in the way of the Kujawa girls going shopping!
I knew all was well when we crossed the border into the USA. The border crossing guard routinely asks us to open the sliding van door to see if the passport pictures match the people sitting behind the tinted windows. I told the girls that when the doors opened to give big, cheesy smiles. Shae being the preteen would not take part but I knew Kourtney was on board with my plan when the border guard kept looking to the back of the van, barely containing his composure. She said he was an easy one to smile for because he was so cute. It kept on like that for the rest of the day.
It was one of those days that a mom cherishes forever with her two daughters. There was no bickering, secrets were shared, including Shaelyn having a fear of owning 73 cats and dying alone. Shaelyn helped push Kourtney in her wheelchair, lifted the wheelchair into the van and provided the musical entertainment. Kourtney kept the one liners coming and kept us all on our toes. It was one of the best days I have had in *years*. It reassured me that I didn't have to have lab results to know Kourtney is OK. We are so thankful. Everyday is a gift.
It has now been 10 days since our return from Arizona. It was great! Pictures to follow.
Today was a tough dose of reality as Kourtney needed to have routine followup bloodwork done. Kourtney and I both felt that there was nothing to be concerned about, however, we both realize how the procedure can spiral downhill so quickly. So bloodwork was ordered for 3 months after the last set was done in January.
After the "hack" job we endured in January at Children's, Dr. Coutemanche suggested we try our local hospital to get her blood drawn. The best of phlebotomists (lab ladies, pokers whatever you call them) came to help, but nobody could get a sample from Kourtney. Kourtney screamed the hospital down. She said the pain was unbearable. Thankfully, getting the blookwork was not "urgent" so now we are working on Plan B. Arghhhhhhh........
Generally Kourtney and I are so worn out that we can't function after an event of the this magnitude. However, after a hug and a pep talk from Angela, Kourtney clearly stated the plans of cross border shopping would not succumb to the trauma of the morning. I was a bit apprehensive about taking her but Shaelyn was off school, and as it stands, nothing gets in the way of the Kujawa girls going shopping!
I knew all was well when we crossed the border into the USA. The border crossing guard routinely asks us to open the sliding van door to see if the passport pictures match the people sitting behind the tinted windows. I told the girls that when the doors opened to give big, cheesy smiles. Shae being the preteen would not take part but I knew Kourtney was on board with my plan when the border guard kept looking to the back of the van, barely containing his composure. She said he was an easy one to smile for because he was so cute. It kept on like that for the rest of the day.
It was one of those days that a mom cherishes forever with her two daughters. There was no bickering, secrets were shared, including Shaelyn having a fear of owning 73 cats and dying alone. Shaelyn helped push Kourtney in her wheelchair, lifted the wheelchair into the van and provided the musical entertainment. Kourtney kept the one liners coming and kept us all on our toes. It was one of the best days I have had in *years*. It reassured me that I didn't have to have lab results to know Kourtney is OK. We are so thankful. Everyday is a gift.
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