In case you missed it on facebook...
Saturday, February 22, 2014
What's Next...
Yesterday was Benjamin's last appointment for this round of treatment.
I left off guessing that Benj would want to try cheese at dinner Thursday night. I gave him a couple of options, cheese being one, but in fact he wanted to eat the meatballs that were in our plans for dinner and which contained egg. By the end of dinner his plate was clean, but he had only eaten part of his meatball. He said it made his mouth feel funny, but as it was a pretty spicy meatball he concluded that it was just the spices. However, a little while later we noticed his eyelids were very slightly swollen and there were bright red patches on his cheeks. Within a few more minutes the redness was gone, but his eyelids remained just barely puffy.
He was a bit restless during the night and when he woke up in the morning he was also struggling slightly with his breathing. The asthma response was very mild, but in the past any breathing issues have only escalated with time. I tested his air flow with a meter we use everyday and he was only slightly below normal, but not in the "caution zone" and certainly nowhere near the "danger zone." Our appointment was early, at 9:30, I decided not to give him any medication so the doctor could evaluate the response. By the time we left the house, an hour later, he was no longer struggling at all for breath. Previously he has NEVER kicked a breathing issue without the use of his meds.
We brought the meatball that had caused the reaction the night before to the doctor. On the way it also occurred to me that the house where we were staying had some plug-in-type air fresheners that could have been part of the asthma response.
The doctor asked about our experience with trying another new item and we reported the slight response to the meatball. We gave him the meatball and he tested Benjamin's muscle response to it, which showed that he was still allergic to something in it. Using the same procedure, he strengthened Benjamin's response to all the ingredients in the meatball. (There is no way to know what ingredient caused the reaction.) Based on my limited understanding there are at least two possibilities for why he reacted: It could have been a new "pattern" to one of the same allergens (I'm not clear on exactly what this means, it's just the language the doctor uses.) Or it could have been a reaction to an ingredient he has always been allergic to, but that we didn't realize because the more major issues were obscuring it. It makes sense to me, based on what I have learned, that it could be that with the big things out of the way and his body already more healthy it is responding to things it just previously didn't have the health, sensitivity or strength to respond to. I'm not sure.
We also talked about the asthmatic response that morning and my theory about the air freshener. He confirmed that the ingredients in air freshener were strongly suspect and tested him for an ingredient common to all air fresheners, which he was indeed allergic to. He pointed out, however, that we had been staying in this house for 3 days and it took him until the 3rd morning to have a response, which was very mild. I also remembered later that we didn't go to the house for the first time until after Benj's first appointment, which obviously was the most dramatic for the beginning of his body's healing process. The way this all played out encourages me that it is reasonable to believe that he really is stronger already.
We talked about next steps, which include a follow-up series of appointments in a month (shorter next time - only 2 days of visits), and testing out various foods until then. We have a plan for the safest way to test out some of the more volatile allergens (such as milk and peanuts). We will start out by putting a tiny bit on his finger and if there is no reaction progress to a tiny bit on his lip, followed by a tiny bit on his tongue. We plan to take the testing process very slowly and methodically. The doctor assured us that if he does react it will be much more mild than previous reactions and he instructed us to bring a sample of anything that causes a reaction to our next visit.
After our appointment we went to a restaurant and allowed Benj to eat part of his hamburger with a bun (something he definitely could not have before, primarily because corn syrup is often used in packaged breads) along with more Heinz ketchup. He didn't have any kind of a visible reaction, but when we returned home (after a 4-hour car ride) he reported that his belly hurt. Although the bun is suspect I think it could have also been the long period of sitting and/or the general emotional upheaval of the last several days.
One final encouraging experience to end what has turned out to be an enormously long post! Thursday afternoon I peeked my head into the room where Benj was having his rest time. He was playing with Legos. I told him I was going to go on a little walk and asked if he wanted to go with me. It's important to note that Benj is characteristically reluctant to go outside and I can not recall him ever agreeing willingly to go on a walk. His face lit up, he jumped up and said, "Yeah! That's sounds like great exercise!" On our way out of the yard he picked up a stick and as we walked he was running along, whacking bushes and rocks and generally expelling lots of creative little boy energy. There are lots of factors which could have caused this burst of outside bliss, but it is clear to me that that afternoon Benj had the energy to just be a little boy which he simply just did not have a couple of days prior.
Going forward I am anxious to see how our hopes and initial observations play out against time and real life. We just don't have enough hard data yet to know if and how this has truly helped him. The initial results have been a mix of huge encouragement and cautious questions. I think there is still more healing to take place in Benj's body, but I am so hopeful that it can happen.
I left off guessing that Benj would want to try cheese at dinner Thursday night. I gave him a couple of options, cheese being one, but in fact he wanted to eat the meatballs that were in our plans for dinner and which contained egg. By the end of dinner his plate was clean, but he had only eaten part of his meatball. He said it made his mouth feel funny, but as it was a pretty spicy meatball he concluded that it was just the spices. However, a little while later we noticed his eyelids were very slightly swollen and there were bright red patches on his cheeks. Within a few more minutes the redness was gone, but his eyelids remained just barely puffy.
He was a bit restless during the night and when he woke up in the morning he was also struggling slightly with his breathing. The asthma response was very mild, but in the past any breathing issues have only escalated with time. I tested his air flow with a meter we use everyday and he was only slightly below normal, but not in the "caution zone" and certainly nowhere near the "danger zone." Our appointment was early, at 9:30, I decided not to give him any medication so the doctor could evaluate the response. By the time we left the house, an hour later, he was no longer struggling at all for breath. Previously he has NEVER kicked a breathing issue without the use of his meds.
We brought the meatball that had caused the reaction the night before to the doctor. On the way it also occurred to me that the house where we were staying had some plug-in-type air fresheners that could have been part of the asthma response.
The doctor asked about our experience with trying another new item and we reported the slight response to the meatball. We gave him the meatball and he tested Benjamin's muscle response to it, which showed that he was still allergic to something in it. Using the same procedure, he strengthened Benjamin's response to all the ingredients in the meatball. (There is no way to know what ingredient caused the reaction.) Based on my limited understanding there are at least two possibilities for why he reacted: It could have been a new "pattern" to one of the same allergens (I'm not clear on exactly what this means, it's just the language the doctor uses.) Or it could have been a reaction to an ingredient he has always been allergic to, but that we didn't realize because the more major issues were obscuring it. It makes sense to me, based on what I have learned, that it could be that with the big things out of the way and his body already more healthy it is responding to things it just previously didn't have the health, sensitivity or strength to respond to. I'm not sure.
We also talked about the asthmatic response that morning and my theory about the air freshener. He confirmed that the ingredients in air freshener were strongly suspect and tested him for an ingredient common to all air fresheners, which he was indeed allergic to. He pointed out, however, that we had been staying in this house for 3 days and it took him until the 3rd morning to have a response, which was very mild. I also remembered later that we didn't go to the house for the first time until after Benj's first appointment, which obviously was the most dramatic for the beginning of his body's healing process. The way this all played out encourages me that it is reasonable to believe that he really is stronger already.
We talked about next steps, which include a follow-up series of appointments in a month (shorter next time - only 2 days of visits), and testing out various foods until then. We have a plan for the safest way to test out some of the more volatile allergens (such as milk and peanuts). We will start out by putting a tiny bit on his finger and if there is no reaction progress to a tiny bit on his lip, followed by a tiny bit on his tongue. We plan to take the testing process very slowly and methodically. The doctor assured us that if he does react it will be much more mild than previous reactions and he instructed us to bring a sample of anything that causes a reaction to our next visit.
After our appointment we went to a restaurant and allowed Benj to eat part of his hamburger with a bun (something he definitely could not have before, primarily because corn syrup is often used in packaged breads) along with more Heinz ketchup. He didn't have any kind of a visible reaction, but when we returned home (after a 4-hour car ride) he reported that his belly hurt. Although the bun is suspect I think it could have also been the long period of sitting and/or the general emotional upheaval of the last several days.
One final encouraging experience to end what has turned out to be an enormously long post! Thursday afternoon I peeked my head into the room where Benj was having his rest time. He was playing with Legos. I told him I was going to go on a little walk and asked if he wanted to go with me. It's important to note that Benj is characteristically reluctant to go outside and I can not recall him ever agreeing willingly to go on a walk. His face lit up, he jumped up and said, "Yeah! That's sounds like great exercise!" On our way out of the yard he picked up a stick and as we walked he was running along, whacking bushes and rocks and generally expelling lots of creative little boy energy. There are lots of factors which could have caused this burst of outside bliss, but it is clear to me that that afternoon Benj had the energy to just be a little boy which he simply just did not have a couple of days prior.
Going forward I am anxious to see how our hopes and initial observations play out against time and real life. We just don't have enough hard data yet to know if and how this has truly helped him. The initial results have been a mix of huge encouragement and cautious questions. I think there is still more healing to take place in Benj's body, but I am so hopeful that it can happen.
Thursday, February 20, 2014
This Feels Like a Dream
We took Benj in for his second visit with the applied kinesiologist today. He asked how Benj was feeling, how he slept last night, and how everything went with his experience trying something new. Benj reported that he feels great, slept great, and that everything went smoothly with the popcorn last night.
In talking with my friend I had learned that we might go in today and find that there were new patterns or viruses that needed to be addressed that would only show up after the first one was fixed, so we were prepared for complicating factors and more treatment, but as the doctor checked him using the allergens he treated for yesterday, Benj remained strong for each one. He found no new issues. We did remember a couple of other things to test for and treat, which he easily did, but other than that it was a pretty straightforward, short appointment today.
Benj started taking the professional quality vitamin supplement the doctor recommended today and we still need to get him one specific vitamin (riboflavin) for some skin irritation at the corner of his mouth caused by a deficiency, but overall not much new happened.
We are immensely encouraged that so far he has not had any complications. We gave him regular ol' Heinz ketchup at Chick-fil-A for lunch today. This is something that in the past has caused him hours of major tummy pain because of the corn syrup in it and he was 100% fine. We plan to test something new at dinner tonight. I haven't asked him yet what he wants to try. My guess is cheese.
Thank you for your prayers and support, friends. So many of you have been invested in Benjamin's health and allergy issues in various ways from cooking special meals for us to keeping him safe in the church nursery. Please continue to pray that anything else that needs to be resolved will come to the surface before tomorrow's appointment. We will keep you updated!
Benj started taking the professional quality vitamin supplement the doctor recommended today and we still need to get him one specific vitamin (riboflavin) for some skin irritation at the corner of his mouth caused by a deficiency, but overall not much new happened.
We are immensely encouraged that so far he has not had any complications. We gave him regular ol' Heinz ketchup at Chick-fil-A for lunch today. This is something that in the past has caused him hours of major tummy pain because of the corn syrup in it and he was 100% fine. We plan to test something new at dinner tonight. I haven't asked him yet what he wants to try. My guess is cheese.
Thank you for your prayers and support, friends. So many of you have been invested in Benjamin's health and allergy issues in various ways from cooking special meals for us to keeping him safe in the church nursery. Please continue to pray that anything else that needs to be resolved will come to the surface before tomorrow's appointment. We will keep you updated!
Wednesday, February 19, 2014
The Beginning of Healing?
I have been reluctant to write for the past few months. I can't pinpoint a reason, other than exhaustion and lack of mental space ... but that's a different post for a different time. Maybe.
But I can not let the events of today go unrecorded. And I absolutely can not hold back the praise due to The Healer for answering our prayers. We believe we have seen a significant step forward in bringing healing to Benjamin's body.
Around Christmastime we were approached by a friend of ours who had seen a doctor for some pretty significant health challenges. She had seen some pretty dramatic relief from life-long food allergy issues and asked if we would be interested in taking Benj for evaluation and treatment. We were unsure if we would proceed because of several complicating factors. Honestly, it just seemed like a really off time to be trying to deal with this issue because of so many other things going on in our life right now. But as I talked to her more and heard some of the amazing stories of what this doctor's specialized knowledge had been able to accomplish for his patients I became convinced we had to try.
Today was our first visit with the doctor. He asked about Benj's history, different issues he has experienced, and some of his specific allergens. He then started to test him. The first allergen he pulled out was dog. The basic procedure was that he would hold a vial of an allergen close to Benjamin's body and test the reaction of his muscles. A weakened muscle would tell him that Benj was allergic or sensitive to that allergen. He showed Benj that the way it affected his body was so strong that if Seth was touching him and the vial was near him it would make Seth's muscles weak! Unsurprisingly, the dog vial affected him significantly. The doctor then began to tap Benjamin at various points on his head and back, explaining that he was actually erasing the allergy from Benj's body, reprogramming his body's response. He took the vial away and brought it close again, pushing on Benj's outstretched arm as he did. The arm remained strong and did not give way. He said, "OK, that one's done. What's next?"
This very surreal procedure and proclamation were repeated again and again as we went through the list: dogs, cats, grasses, trees, dust, dust mites, molds.... We had some sample items from environments where he has had significant asthma reactions in the past. The doctor would agree, "oh yes, you don't like this place at all!" and tap, tap, tap, "OK, all better." Whaaaat?
Next we moved onto foods. Benj commented soon after we told him our plan to take him to see this doctor, "Well, if it works, I hope corn is the first one to go!" So when the doctor asked him what he wanted to work on first we definitely agreed it had to be corn. Tap, tap, tap. "What's next?" As he continued to work we had some interesting surprises. Most significantly, he found Benj was very sensitive to fructose...you know, fruit? Yeah, it was pretty much making him sick every time he ate it. We were also surprised to find that he was sensitive to the lactose (sugar) in milk, not the casein (protein) we had always thought, and what had appeared to be an oat allergy was actually a virus that was activated by oats in his body. The same was true with peanuts. Dealing with those is on the agenda for tomorrow.
Too good to be true? It definitely sounded like it. At the end of the appointment he asked us if we had questions. Well, yes, many. Such as, "what just happened?!" I thought that, but what I actually asked was, "so what do you want us to do in the next 24 hours?" (We have appointments with him for 3 consecutive days.) He said, "I want you to test one thing." You mean like feed him something he is (was?) allergic to? Yep. That's what he meant. We asked Benj what he wanted to try and he picked popcorn. So tonight Seth popped a small pan full of popcorn and we watched with smiles on our faces (and a bit of anxiety in our hearts) as Benj ate popcorn for the first time in his life. An hour and a half later he was still completely pain free (he gets severe stomach cramps with corn) and now, several hours later he is sleeping peacefully. I honestly can't wrap my head around it.
A couple of other significant moments from our visit that I don't want to forget:
1. The doctor commented that with all the problems his body was having he wasn't absorbing nutrients properly. With the help of a vitamin supplement he said he's going to start growing like crazy. (If you don't know, Benj is 8 and wearing size 5's. This was definitely great news!
2. He asked about school. I told him Benj is smart and does well in school but he has issues paying attention. He said something along the lines of, "Well, of course he does. He feels terrible! You're going to see a big difference in school."
Do we know yet that Benj is completely healed? No. Do we know that he will be completely healed? No, not for sure. But I do know my son ate popcorn tonight and is not in pain in his sleep. And I say, praise God for that!
But I can not let the events of today go unrecorded. And I absolutely can not hold back the praise due to The Healer for answering our prayers. We believe we have seen a significant step forward in bringing healing to Benjamin's body.
Around Christmastime we were approached by a friend of ours who had seen a doctor for some pretty significant health challenges. She had seen some pretty dramatic relief from life-long food allergy issues and asked if we would be interested in taking Benj for evaluation and treatment. We were unsure if we would proceed because of several complicating factors. Honestly, it just seemed like a really off time to be trying to deal with this issue because of so many other things going on in our life right now. But as I talked to her more and heard some of the amazing stories of what this doctor's specialized knowledge had been able to accomplish for his patients I became convinced we had to try.
Today was our first visit with the doctor. He asked about Benj's history, different issues he has experienced, and some of his specific allergens. He then started to test him. The first allergen he pulled out was dog. The basic procedure was that he would hold a vial of an allergen close to Benjamin's body and test the reaction of his muscles. A weakened muscle would tell him that Benj was allergic or sensitive to that allergen. He showed Benj that the way it affected his body was so strong that if Seth was touching him and the vial was near him it would make Seth's muscles weak! Unsurprisingly, the dog vial affected him significantly. The doctor then began to tap Benjamin at various points on his head and back, explaining that he was actually erasing the allergy from Benj's body, reprogramming his body's response. He took the vial away and brought it close again, pushing on Benj's outstretched arm as he did. The arm remained strong and did not give way. He said, "OK, that one's done. What's next?"
This very surreal procedure and proclamation were repeated again and again as we went through the list: dogs, cats, grasses, trees, dust, dust mites, molds.... We had some sample items from environments where he has had significant asthma reactions in the past. The doctor would agree, "oh yes, you don't like this place at all!" and tap, tap, tap, "OK, all better." Whaaaat?
Next we moved onto foods. Benj commented soon after we told him our plan to take him to see this doctor, "Well, if it works, I hope corn is the first one to go!" So when the doctor asked him what he wanted to work on first we definitely agreed it had to be corn. Tap, tap, tap. "What's next?" As he continued to work we had some interesting surprises. Most significantly, he found Benj was very sensitive to fructose...you know, fruit? Yeah, it was pretty much making him sick every time he ate it. We were also surprised to find that he was sensitive to the lactose (sugar) in milk, not the casein (protein) we had always thought, and what had appeared to be an oat allergy was actually a virus that was activated by oats in his body. The same was true with peanuts. Dealing with those is on the agenda for tomorrow.
Too good to be true? It definitely sounded like it. At the end of the appointment he asked us if we had questions. Well, yes, many. Such as, "what just happened?!" I thought that, but what I actually asked was, "so what do you want us to do in the next 24 hours?" (We have appointments with him for 3 consecutive days.) He said, "I want you to test one thing." You mean like feed him something he is (was?) allergic to? Yep. That's what he meant. We asked Benj what he wanted to try and he picked popcorn. So tonight Seth popped a small pan full of popcorn and we watched with smiles on our faces (and a bit of anxiety in our hearts) as Benj ate popcorn for the first time in his life. An hour and a half later he was still completely pain free (he gets severe stomach cramps with corn) and now, several hours later he is sleeping peacefully. I honestly can't wrap my head around it.
A couple of other significant moments from our visit that I don't want to forget:
1. The doctor commented that with all the problems his body was having he wasn't absorbing nutrients properly. With the help of a vitamin supplement he said he's going to start growing like crazy. (If you don't know, Benj is 8 and wearing size 5's. This was definitely great news!
2. He asked about school. I told him Benj is smart and does well in school but he has issues paying attention. He said something along the lines of, "Well, of course he does. He feels terrible! You're going to see a big difference in school."
Do we know yet that Benj is completely healed? No. Do we know that he will be completely healed? No, not for sure. But I do know my son ate popcorn tonight and is not in pain in his sleep. And I say, praise God for that!
Monday, November 25, 2013
First Ballet Recital
Our girls have been taking ballet for the first time this semester. Last Saturday, November 16 was their first performance. They were both so excited to perform and both did an excellent job remembering their steps.
Talia took ballet very seriously. She practiced at home and wanted to remember all the names of the various steps she learned. I was so proud of the way she worked hard to perfect her posture and form. I think you can tell in the video that she is concentrating hard on doing everything just right. :)
Talia's class performed immediately after Leila's class. In the video Talia is 3rd from the right. (She starts out in the back row and moves to the front after a few bars.)
Here are a few pictures of the budding ballerinas:
After ballet each week Leila would come out of class and immediately show me her new moves. Her favorites are passe and plie. She was sick the entire week leading up to the performance so we were thankful she was feeling better by Saturday and was able to give a lovely performance.
Leila's class was first on the program. In the video Leila is the one closest to the teacher, all the way to the left side.
Talia took ballet very seriously. She practiced at home and wanted to remember all the names of the various steps she learned. I was so proud of the way she worked hard to perfect her posture and form. I think you can tell in the video that she is concentrating hard on doing everything just right. :)
Talia's class performed immediately after Leila's class. In the video Talia is 3rd from the right. (She starts out in the back row and moves to the front after a few bars.)
Here are a few pictures of the budding ballerinas:
Before the Performance
Leila watches Mrs. Hannah
Talia concentrates
Daddy and Benj gave the girls roses
The ballerinas on stage
Ready to go home
Leila loves her rose :)
Sunday, November 24, 2013
Halloween from a Galaxy Far, Far Away
For the past week I have had this totally self-imposed rule hanging over my head. I'm pretty sure that Halloween pictures can't be posted after Thanksgiving, even though I completely made that up. I think it's a good thing I have these false deadlines, though, otherwise I might never post on my blog. (Poor grandparents!)
So, by the skin of my teeth I present: Halloween 2013. (Phew! I made it!)
Carving Pumpkins
The pumpkin gutting was attended by much more willing participants this year.
This will turn into a delicious toasted snack later on. Yum!
Benj carving his self-designed pumpkin with precision
Benj & Talia both designed their own pumpkins this year. I was impressed with their creativity!
Leila loves flowers so she and I worked together to create her design.
Church Fall Festival
As I mentioned in my last post, Star Wars' newest fans live at our house. Benj's latest interest never fails to infect his sisters so when Benj announced that he was going to be a Jedi (he ended up changing his mind, as you will see), Talia decided to be Padme, Leila wanted to be Princess Leia, and of course we had to make Channah an Ewok.
Ewok Channah (yes, Ewok...despite the monkey costume and the banana)
Princess Lei(l)a
Padme (very specifically NOT Queen Amidala)
Darth Benj enjoying a banana
The Whole Ensemble
Halloween Day
Sweet Siblings
"Somebody" does NOT like posing for pictures these days
We did go trick-or-treating Halloween night (sort of), but with the pouring down rain, four kids to dress in costumes, and various items to transport to our friends' house for dinner and trick-or-treating, I forgot the camera. :( Since it was pouring, cold, and windy we ended up going to a local church where the kids went from booth to booth in their gymnasium.
Saturday, November 23, 2013
In which Benj turns 8...Star Wars style
Benj has always had very well-defined interests. We have gone stage-by-stage through various seasons eating, breathing, and sleeping his latest obsessions. For the past year or more his interest in Star Wars has grown into a full-blown mania. This boy is a Star Wars fanatic! Of course that means a Star Wars birthday party was a given this year. With the help of Pinterest I found some really fun ideas that I hope made this a memorable birthday for him.
These glittering light sabers had the invitations rolled up inside.
Napkin light sabers, "Yoda Soda," and grape sabers. The Yoda face was from a printable 3-D art project I happened upon. I cut and glued for about an hour and voila! Yoda! Neat.
My personal favorite - Han Solo in Carbonite jello!
So you can't really tell, but in the little bread pan is hummus. The chips are supposed to be teeth and the figure is Bobo Fett. Any guesses?
I have always wanted to try the balloons hanging from the ceiling. I liked the effect. Kinda like planets, maybe? Or spaceships?
Light saber training with Jedi Master Seth
Learning some moves
My version of the Death Star.
My littlest padawans :)
She's a force of destruction on a normal day. Watch out when that girl's got a light saber!
(Later that night)
Darth Benj. He got this helmet and light saber for his birthday. I'm missing some shots due to a dead camera - hopefully my mom got some - but Seth dressed up as Darth Vader and came out at the end of the party. The kids got to use the Jedi moves they learned earlier to fight him. After everyone had fought him we let Benj "finish him off." Defeated, Seth took off the helmet, said, "Benj, I am your father," and gave him the helmet. :)
Happy Birthday, Benjamin! We are so proud of the young man you are becoming. Your creativity and endless ideas never cease to amaze me. Thinker, artist, brother, protector, spider-killer, Lego master, trivia genius, creative play mastermind, leader, follower, peacemaker, laundry manager, you are growing into such an amazing kid! I'm so thankful to be your mama.
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