If you will allow me, I'd like to speak metaphorically for a few minutes.... I'll try to clarify the metaphor, but if at any point you don't understand, please feel free to ask =)
As you read on my last post, we just rose to a mountain top last week! We are still basking somewhat in the amazing view of our oldest daughter no longer having an anaphylactic food allergy, or any at all now! Praise The LORD!!!!
We are also acutely aware of families around us and in our community who are walking in very dark Valley's right now. There are 2 families with very young boys that have been in the dark valley of fighting cancer for 2 years... both of these young boys have come very close to losing their battle but are somehow still fighting in their weakness.... if you feel so led you can pray for Christian and Jayden (friends, not brothers) to have miraculous healing and for their families to have renewed strength and comfort. And yesterday a family (Wife/Mom and 5 kids ages 7-14) at the (small, private, Christian) school my daughters attend was plunged into a very deep very dark valley when their Dad was unable to survive his injuries after being broadsided on a nearby highway. My heart aches!!! There is of course all the other people in dark valley's right now, that are on the news, such as the families of Sandy Hook Elementary in Connecticut.
It is easy for our small victory to get lost in onslaught of darkness.
And now, we, as a family, are looking to start on a new hiking trail. We have hiked in this park before (the first round of expansion surgery 2 years ago) but not on THIS trail.... and we do not have a trail map, and we can not see which way this trail goes, after the first bend in the trees. We know a bit of what the beginning of the trail will be like, as many of the trails in this park seem to start this way, it will be rocky with a short steep incline and after that you turn a corner and I don't know whether the path will lead up toward the mountain or down toward the valley. So we pray. And we ask you to pray. Pray that God will lead us toward the mountain! That there will be no complications, that recovery will be smooth and easy. But there are no guarantees. We may start heading up the mountain, only to choose the wrong fork in the path and start a rapid descent into the valley... we have seen this happen to many families in our support group. But we can not focus on the possibility of the Valley, we need to keep our eyes on the top of the Mountain and our thoughts on the possibility of an amazing view from the top.
I will write more very soon regarding the surgery and our upcoming journey and I hope you will continue to follow us on this journey and as we follow and support those around us on their journey's, whether it is in the valley or on the mountain.
Thursday 10 January 2013
Sunday 6 January 2013
Answered Prayer
I've decided that this should maybe be called "Bug's Blog" because most of my posting is about her.... but I try to put the rest of us in here, honest! For those of you not super familiar with our family, Bug is my oldest (of 3kids) daughter, 8.5 years old to be exact. Bug has some special things about her that require extra care. Don't get me wrong, she is one of the smartest, prettiest, most caring people I know, she is just 'special' too =)
When Bug was 5 or 6 years old, she prayed, as we are a 'believing' family, and asked God to take away her food allergies (at that time moderate Eggs and Severe Anaphylaxis Dairy) so that she could enjoy her friends birthday parties, eat beside friends at school and participate in school ice cream parties (which seem the most popular way to reward students, at least at her school). We, as adults, knew this may not bring any change but prayed with her.
2 years later she had her blood retested for the first time in 6 years (had skin prick testing annually) and, even though her skin test was still highly reactive to the dairy protein, her blood/immune response had dropped significantly!! Her allergist had always told us that it is possible to outgrow this allergy and that it would likely happen around 7 or 8 years old and this test was only a few months before her 8th birthday. Now, our allergist was not comfortable doing a food Challenge in his office with her skin prick being so reactive but referred us to an Allergy and Immunology Specialist at the Alberta Children's Hospital who does food challenges. He said her low blood response was a good sign she may have outgrown the allergy. We got the call for the referral and booked the next appointment, 7 months away. Yup. That's how it works in Canada.... Our government may 'sponsor' our healthcare, but it means limited access, especially to specialists, and WAITING, often long periods of time, to get the 'free' (that we pay for in our taxes anyway) care we need.... I digress. That intake appointment took place at the beginning of December, 2012. We met with the doctor, who was very nice, very encouraging and very informative. She told me to start putting dairy in baking and they would call us with a date to come into the hospital and do a Food Challenge, where we bring actual cow's milk and they feed it to our (previously highly allergic) daughter on purpose! Now, if you've ever dealt with an allergy, food restriction or even diet for yourself or a loved one, you might have a tiny understanding of the complete flip my brain has to do.... the very thing that I have protected my sweet baby from since I realized (when she was 7 months old) I needed to, I am going to force her to eat.... that doesn't make sense! Who in their right mind force feeds someone the very thing you have always believed, and had evidence that, would kill them????
So 2 days ago I purchased a small jug of 2% chocolate milk and yesterday I packed it along as I took my baby to the hospital. WEIRD. There is seriously no other way to describe what this feeling is... yes, we are happy, but this is so foreign to us! I don't think I really need to describe how the test goes, but they do it in small, timed amounts (waiting between and watching for reactions), then a large dose, wait an hour and then go home (if no reactions have occurred). That's it. That's IT. Now, it's common for my daughter to over think and to WORRY... a lot for a kid her age.... so I brought a new game for her Nintendo DSlite so she would have a distraction, something to focus her mind on instead of thinking about the INSANE thing we were about to do... and it WORKED. She drank the milk and had no reaction!!!! The way I put it to my facebook friends yesterday was that "the food challenge was so nondescript that it is surreal". I'm not sure what I was expecting, but 'nothing' was not it! So, as we left the hospital, in a daze of "that was weird", the doctor told us to do a measured test with the milk at home again today.... which we did, and if that went fine too, we could "let her loose".... she needs to continue carrying her epi-pen for 6 more months but can eat whatever is in front of her from now on. WEIRD! And we actually have to make sure she is eating dairy on a very regular basis so that her body doesn't 'forget' and revert. WEIRD!
Weird, weird, weird, weird, WEIRD!
I can stop reading labels on foods when grocery shopping. I no longer have to show each parent whose home she visits how to use an epi-pen. I didn't have to tell the venue for her sisters birthday party next week that we have an anaphylactic allergy coming (on the confirmation it asked allergies or health concerns, it's a sports facility). When she has surgery next week (that's a WHOLE 'NOTHER post) we don't have to request the egg and dairy free meal option (which are REALLY boring when you consider what hospital food is already like...) for her to eat for 4 days. I can start looking for easy, quick dinner recipes -- that all the kids might eat. I have to completely UNdo all the training I've done for the past 4 years at her school, enforcing the severity of her restrictions with staff. She will not take her little cupcake container to the next friends party she gets invited to, and for the first time EVER she will taste the store-bought cake and creamy frosting served there. She will not be limited to licorice and lollipops when sorting her Halloween candy this year. She can steal mommy's Cadbury Mini Eggs at Easter. She can BE AT the ice cream party her school throws for the strongest readers after the spring Read-A-Thon, and not just BE THERE, but also EAT THE ICE CREAM! She can order the Booster Juice or food items on the school special lunch days. She... I... uh... I'm at a loss! It actually BLOWS MY MIND!!! I have always had to think one way with cooking and with her eating and now I have to think the exact OPPOSITE way! I reckon it would be something like moving to England and driving on the opposite side of the road... WEIRD! At least, for a while....
On another note, The Boy, who has been eating Gluten Free for almost 3 years, was challenged over Christmas (by us as it was an intolerance, not an allergy) and seems fine eating Gluten now too. So, as far as the kids are concerned, I can cook ANYTHING. ANYTHING!!! No skipping past all the recipes on the Kraft website that have cheese in the photo. The Hubby is still Gluten Free, but he's a lot easier to work around. We can eat at restaurants and not tell the server that she has a severe allergy, not order the noodles without the sauce, not ask the chef if the breading on the chicken fingers has whey powder in it.
I think more than half of what I've said here is more an effort to convince myself than it is to explain anything to you... but I needed to say it. Perhaps if I read it, it will make more sense to me?
We still have to be aware and watch for reactions and such, but at the very least she is far less allergic and can have dairy products and exposure unlike ever before.... WEIRD!
When Bug was 5 or 6 years old, she prayed, as we are a 'believing' family, and asked God to take away her food allergies (at that time moderate Eggs and Severe Anaphylaxis Dairy) so that she could enjoy her friends birthday parties, eat beside friends at school and participate in school ice cream parties (which seem the most popular way to reward students, at least at her school). We, as adults, knew this may not bring any change but prayed with her.
2 years later she had her blood retested for the first time in 6 years (had skin prick testing annually) and, even though her skin test was still highly reactive to the dairy protein, her blood/immune response had dropped significantly!! Her allergist had always told us that it is possible to outgrow this allergy and that it would likely happen around 7 or 8 years old and this test was only a few months before her 8th birthday. Now, our allergist was not comfortable doing a food Challenge in his office with her skin prick being so reactive but referred us to an Allergy and Immunology Specialist at the Alberta Children's Hospital who does food challenges. He said her low blood response was a good sign she may have outgrown the allergy. We got the call for the referral and booked the next appointment, 7 months away. Yup. That's how it works in Canada.... Our government may 'sponsor' our healthcare, but it means limited access, especially to specialists, and WAITING, often long periods of time, to get the 'free' (that we pay for in our taxes anyway) care we need.... I digress. That intake appointment took place at the beginning of December, 2012. We met with the doctor, who was very nice, very encouraging and very informative. She told me to start putting dairy in baking and they would call us with a date to come into the hospital and do a Food Challenge, where we bring actual cow's milk and they feed it to our (previously highly allergic) daughter on purpose! Now, if you've ever dealt with an allergy, food restriction or even diet for yourself or a loved one, you might have a tiny understanding of the complete flip my brain has to do.... the very thing that I have protected my sweet baby from since I realized (when she was 7 months old) I needed to, I am going to force her to eat.... that doesn't make sense! Who in their right mind force feeds someone the very thing you have always believed, and had evidence that, would kill them????
So 2 days ago I purchased a small jug of 2% chocolate milk and yesterday I packed it along as I took my baby to the hospital. WEIRD. There is seriously no other way to describe what this feeling is... yes, we are happy, but this is so foreign to us! I don't think I really need to describe how the test goes, but they do it in small, timed amounts (waiting between and watching for reactions), then a large dose, wait an hour and then go home (if no reactions have occurred). That's it. That's IT. Now, it's common for my daughter to over think and to WORRY... a lot for a kid her age.... so I brought a new game for her Nintendo DSlite so she would have a distraction, something to focus her mind on instead of thinking about the INSANE thing we were about to do... and it WORKED. She drank the milk and had no reaction!!!! The way I put it to my facebook friends yesterday was that "the food challenge was so nondescript that it is surreal". I'm not sure what I was expecting, but 'nothing' was not it! So, as we left the hospital, in a daze of "that was weird", the doctor told us to do a measured test with the milk at home again today.... which we did, and if that went fine too, we could "let her loose".... she needs to continue carrying her epi-pen for 6 more months but can eat whatever is in front of her from now on. WEIRD! And we actually have to make sure she is eating dairy on a very regular basis so that her body doesn't 'forget' and revert. WEIRD!
Weird, weird, weird, weird, WEIRD!
I can stop reading labels on foods when grocery shopping. I no longer have to show each parent whose home she visits how to use an epi-pen. I didn't have to tell the venue for her sisters birthday party next week that we have an anaphylactic allergy coming (on the confirmation it asked allergies or health concerns, it's a sports facility). When she has surgery next week (that's a WHOLE 'NOTHER post) we don't have to request the egg and dairy free meal option (which are REALLY boring when you consider what hospital food is already like...) for her to eat for 4 days. I can start looking for easy, quick dinner recipes -- that all the kids might eat. I have to completely UNdo all the training I've done for the past 4 years at her school, enforcing the severity of her restrictions with staff. She will not take her little cupcake container to the next friends party she gets invited to, and for the first time EVER she will taste the store-bought cake and creamy frosting served there. She will not be limited to licorice and lollipops when sorting her Halloween candy this year. She can steal mommy's Cadbury Mini Eggs at Easter. She can BE AT the ice cream party her school throws for the strongest readers after the spring Read-A-Thon, and not just BE THERE, but also EAT THE ICE CREAM! She can order the Booster Juice or food items on the school special lunch days. She... I... uh... I'm at a loss! It actually BLOWS MY MIND!!! I have always had to think one way with cooking and with her eating and now I have to think the exact OPPOSITE way! I reckon it would be something like moving to England and driving on the opposite side of the road... WEIRD! At least, for a while....
On another note, The Boy, who has been eating Gluten Free for almost 3 years, was challenged over Christmas (by us as it was an intolerance, not an allergy) and seems fine eating Gluten now too. So, as far as the kids are concerned, I can cook ANYTHING. ANYTHING!!! No skipping past all the recipes on the Kraft website that have cheese in the photo. The Hubby is still Gluten Free, but he's a lot easier to work around. We can eat at restaurants and not tell the server that she has a severe allergy, not order the noodles without the sauce, not ask the chef if the breading on the chicken fingers has whey powder in it.
I think more than half of what I've said here is more an effort to convince myself than it is to explain anything to you... but I needed to say it. Perhaps if I read it, it will make more sense to me?
We still have to be aware and watch for reactions and such, but at the very least she is far less allergic and can have dairy products and exposure unlike ever before.... WEIRD!
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