Love seeing hopeful news! Check out this article in The Seattle Times. http://seattletimes.nwsource.com/html/localnews/2018756084_immunetransplant24m.html#.UBNMEHA4vM8.facebook
Medical advances just amaze me. Hope this trial goes well!
Friday, July 27, 2012
Latest
While I've never been able to completely turn off and relax, in the warmth of the summer breeze I've been able to steal a few carefree moments. Splashing with the kids in the pool, hanging out roasting marshmallows by the fire, cheering at soccer games, beach reads, and just chatting with friends on the patio have brought me a sense of calm in our storm.
The further this road winds, the more challenging its detours become. It's tough to explain, and ever harder for those on the outside to truly comprehend. I'd never wish this situation on anyone, no one deserves the frustration and heartbreak. Yet I ask you to consider for a moment, where do you begin to share when the saga seems as complex and bizarre as a soap opera plot line? How do you make long term decisions when your impending fates hang upon the analysis of a few molecules? What if your fork in the road moved you so far away from everything you toiled to build? How would you react when faced with unsolicited criticism for trying to take the best direction for an unknown tomorrow? How do you wrap your head around the fact that answers are still uncertain and pending, let alone rationalize the reasons to others who ask and just can't comprehend themselves?
These are just a handful of the tornadic thoughts whipping around our heads every day. So in asking how we are, we are good, just know if we seem distracted, there is a great deal on our minds.
Clearly our lives have changed, and despite the frustration uncertainty brings, there is something soothing about surrendering yourself in the acceptance of what cannot be changed. At times I wonder where I would be if all had gone according to my plan, then I stop and can't help but trust that this is the plan.
As we were told our results were still not in, we were also reminded just how specialized, not to mention complicated, Cole's case has become. The multitude of twists in our journey still does not cease to astound me when I look at where we've been. While we await these results, immunology is looking at programs in both Toronto and Boston regarding the IL-10 receptor deficiency and hoping Cole may be a candidate for one of the studies. Even though there is an option of sending a specimen to an expert in Germany, there is doubt that our insurance company will approve the order.
Once again, we wait.
In the meantime, during the rain, we had one heck of a Christmas in July yesterday, filled with cutout cookies, cocoa, The Polar Express, crafts, and carols. Giggles and smiles all around, especially when our truck obsessed little boy kept insisting the train on screen was a truck. Guess we need a in-train-vention from our friend Jackson!
Looking forward to another day of calm today, playing school right now and hoping the sun peeks out so we can play outside, maybe even take the kids on a new adventure!
Tuesday, July 17, 2012
Idea - Maybe....
Many of you reading know the journey we have been on. Those of you who know us personally may understand how this has changed us, then again, you may not.
In all this, I have had a nagging need to do something, not just for our family or Cole, but for others in situations like ours. Yes, we did the Crohn's walk, which will be an annual tradition, but I need to do more when I am able.
This is where I'm asking my network for help. I have an idea and need to explore how to get it off the ground. Basically, it's to help parents like us, giving them a moment, a few hours to catch their breath, as they navigate the rising and falling squalls that their new world has become. While you always carry the situation with you, taking a step back, a breath of fresh air, can recharge your batteries more than you know.
However, I have noticed that few of us in these types of scenarios do this, especially with our spouses, for one reason or another.
I want to change that.
There are support groups to talk, which are tremendously beneficial, but in this case, my goal is to provide couples an opportunity where they have a few hours to turn the volume down from their lives, have an afternoon or evening out, and recharge. I know many may say they can do this themselves, but again, many will not, be it care or cost issues. As much as we have tried to keep things normal for our older kids, we are tired, and don't often do the same for ourselves. Yet, while infrequent, the dates my husband and I have gone on have given us so much, not just a few moments away, especially since we often talk about the kids as well as all the medical stuff, but a strengthening in us. And I know any parent can use this, but once you've begun to endure situations creating endless worry, it is a new ball game, one I hope none of you need to stomach.
So, if you have any tips for me, please email me, or message me. Is this a good idea or not? I realize this may just be a pipe dream, but in my head it makes sense as a way I can help others manage to take their own deep breaths, then continue with their marathons.
In all this, I have had a nagging need to do something, not just for our family or Cole, but for others in situations like ours. Yes, we did the Crohn's walk, which will be an annual tradition, but I need to do more when I am able.
This is where I'm asking my network for help. I have an idea and need to explore how to get it off the ground. Basically, it's to help parents like us, giving them a moment, a few hours to catch their breath, as they navigate the rising and falling squalls that their new world has become. While you always carry the situation with you, taking a step back, a breath of fresh air, can recharge your batteries more than you know.
However, I have noticed that few of us in these types of scenarios do this, especially with our spouses, for one reason or another.
I want to change that.
There are support groups to talk, which are tremendously beneficial, but in this case, my goal is to provide couples an opportunity where they have a few hours to turn the volume down from their lives, have an afternoon or evening out, and recharge. I know many may say they can do this themselves, but again, many will not, be it care or cost issues. As much as we have tried to keep things normal for our older kids, we are tired, and don't often do the same for ourselves. Yet, while infrequent, the dates my husband and I have gone on have given us so much, not just a few moments away, especially since we often talk about the kids as well as all the medical stuff, but a strengthening in us. And I know any parent can use this, but once you've begun to endure situations creating endless worry, it is a new ball game, one I hope none of you need to stomach.
So, if you have any tips for me, please email me, or message me. Is this a good idea or not? I realize this may just be a pipe dream, but in my head it makes sense as a way I can help others manage to take their own deep breaths, then continue with their marathons.
Friday, July 13, 2012
Half Full
While it may not seem like it, I am always trying to look at the full part of my glass. Well, this morning, my coffee cup!
Right now, your love, friendship, support, and understanding is all I need. Knowing what I have in so many of you and the laughter of my children is what keeps me smiling past the rough patches. That and, while it is cold, my coffee cup is still half full.
Cole is actually drinking his instant breakfast as I type, instead of throwing it at the dog and he is up 10 ounces in the last week and a half. Although he's still off the charts, he's moving in the right direction. I'm not exactly sure what he's liked this past week but at least I've cooked or baked some winners.
Vials sent, sealed, and delivered fine. Fingers crossed, blood marker results from Philly could be in as early as this afternoon. From there I can only hope if the anticipated genetic tests are ordered the paperwork goes smoothly and approval is swift. Cinci blood work will be a little longer, but I can be patient for a week, that isn't all that long these days.
Miraculously the car repair was not as bad as we feared, thus no more worries of being stranded on the side of a hot road with three kids. Luckily, Nick's got a great partner at work who he happened to be carpooling with all summer, so there was no scrambling for a vehicle for our multiple medical commutes this week.
In addition, it has been nice to spend some time outside in the sun with some very healthy friends. After a long lonely winter, with little more than phone calls, a few of the girls' friends have come to swim. They've had to stay outside, just in case, but Cole's afternoon nap has given the girls a little bit luxury where we have not had to say no for a change. Due to my own appointments, they've even had a wonderful day with kids away from home, thanks to my friend Lori, brave enough to take them to art class, the playground, and then let them invade her house for the day with her own two kids, even though my #2 can be quite a challenge with hers.
We are still hopeful that I will be able to get back into my classroom this fall. It is such a challenge to make decisions when you are still waiting for information. I am so fortunate to be in a career where I have been able to take as much time as I have, and am optimistic to jump right back in with my colleagues, who I miss tremendously. Again, I know I have changed over this journey, and know these individuals will treat me the same as before, which is all I want. I don't want to be looked at as a sob story, because you know what, I don't feel sorry for myself. We've welcomed one really cool kid into our family and he has opened our eyes to a different world. I would never change that. He just happens to have some hurdles to jump and needs our help, that's what parents do. The team I work with is amazing, like a family, and I've been lucky to have them as co-workers and friends, and love that when I see them, it as we are picking up where we left off. Looking forward to it on a regular basis somewhere on this road.
As a very proud, independent individual I have always wanted to do things myself because I could, and maybe I just don't want to seem weak or dependent. I know many of you have generously asked what you can do, and honestly, I believe we are doing ok. But the few times I have needed something and was just too darn stubborn to say anything, I am lucky to have people who just said they were doing this or that, whether watching the kids, dragging me out, understanding I was too tired for plans, or volunteering to take me to appointments for myself. I am so thankful for you, and for those who really want to help, don't worry, I am not so shy or proud anymore that I will not ask, but am saving my requests for the days when I just may not be here to help if and when we are finally sent to Houston or Boston.
Right now, your love, friendship, support, and understanding is all I need. Knowing what I have in so many of you and the laughter of my children is what keeps me smiling past the rough patches. That and, while it is cold, my coffee cup is still half full.
Wednesday, July 11, 2012
Good, Bad, and Ugly
The Good
After eight vials were drawn the blood has finally been sent. Crazy to know by now it has been delivered to three different hospitals.
The Bad
Despite the nurse's rapid delivery to the courier, our wait still moves as slow as molasses! At least the blood marker tests should be back in just a few days, Monday at best.
The Ugly
Even with these tests, the markers may merely indicate the need for further investigation, AKA, more testing.
When the day's events exhaust all my energy I know recharging isn't far away, even if it is short lived.
Thank you all again for your constant love and support.
After eight vials were drawn the blood has finally been sent. Crazy to know by now it has been delivered to three different hospitals.
The Bad
Despite the nurse's rapid delivery to the courier, our wait still moves as slow as molasses! At least the blood marker tests should be back in just a few days, Monday at best.
The Ugly
Even with these tests, the markers may merely indicate the need for further investigation, AKA, more testing.
When the day's events exhaust all my energy I know recharging isn't far away, even if it is short lived.
Thank you all again for your constant love and support.
Tuesday, July 10, 2012
Long
Doing what I do when I'm stressed - cooking. Planning to make spanakopita and cannolis. I know, odd combination. But one I love, the other should put some more meat on Cole's bones.
After spending the morning at the hospital, supposedly for blood tests, we were sent on our way. According to the technician, there was an issue with how the specimens were to be transported that needed to be worked out before the draw could be done. Really? They've been coordinating this draw for two weeks, we have our out of network approvals and were told to show up today. We have been jumping through hoops for a year now, still with no end in sight. At this point if I could wave a wand to get answers other than "we need more tests" I would. Actually, I'd settle for driving the blood to Philly and Cincinnati myself!
Honestly, my overall frustration level at being backed into a corner where I can do so little for my child is beyond words. I know and appreciate that the doctors are doing what they can, especially by seeking other experts and looking into all their suspicions, but inside I'm irrationally screaming because when it is a child it nothing should take this long.
Needless to say, we are still waiting, not for answers, but for the draw itself. Then the real wait starts. For this moment, while my girls play and my boy sleeps, I will cook. Hopefully the kids approve of today's treats.
After spending the morning at the hospital, supposedly for blood tests, we were sent on our way. According to the technician, there was an issue with how the specimens were to be transported that needed to be worked out before the draw could be done. Really? They've been coordinating this draw for two weeks, we have our out of network approvals and were told to show up today. We have been jumping through hoops for a year now, still with no end in sight. At this point if I could wave a wand to get answers other than "we need more tests" I would. Actually, I'd settle for driving the blood to Philly and Cincinnati myself!
Honestly, my overall frustration level at being backed into a corner where I can do so little for my child is beyond words. I know and appreciate that the doctors are doing what they can, especially by seeking other experts and looking into all their suspicions, but inside I'm irrationally screaming because when it is a child it nothing should take this long.
Needless to say, we are still waiting, not for answers, but for the draw itself. Then the real wait starts. For this moment, while my girls play and my boy sleeps, I will cook. Hopefully the kids approve of today's treats.
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