Something amazing happened today. I feel I need to get out my notes from seminary re: modern day miracles, to understand them theologically. But, it really doesn't even matter, because I believe God intervened dramatically today.
Long story short: insurance carrier is now telling us that they see no problem with our policy and the hospital's billing...after they were adamant before that we would incur this fee, costing mot likely around $8K.
Praise to God, who heard the cry of my heart, and the prayers of close friends and family. And, thanksgiving to Him who loves little Samuel even more than we do. I often struggle with doubt in his goodness and his activity in our lives, and feel grateful to have seen Him work this one out. I hope I don't forget this.
Wednesday, August 31, 2011
Tuesday, August 30, 2011
Red Flag
I am not articulate. I am tired and sad. And, I still must make myself go put away dirty dishes and pick up toys. But, for all three of you that are reading my blog, I felt I had to share the news I received today.
A major problem with insurance! I was scared to hope that we could actually go and be helped by those at NJ, but did not think it would be an insurance issue. I thought we had already covered those bases and had green lights. But, it seems that there is some code that Samuel's insurance will not cover. Regarding the billing of the actual facility---rooms, equipment, etc. He will be billed as outpatient, yet because he would be in the hospital all day/every day there is a charge re: the physical property, which, his insurance won't pay. Which would mean $6-9K out of pocket. Yikes.
I really do not know what to think. There is a part of me that still hopes. I think that's because I know he must go. I cannot keep putting these intense steroids on him, wet wraps at night and sometimes during the day, doing 20 other intense things...AND it not even seeming to help. When we go out of the house he usually wears pants so much of his flares are covered. But if I let him wear shorts, as I did today, people stop and gawk. We have had four people ask HIM what is wrong in the past couple of days. Most ask if he has chicken pox. I am sad, because he has noticed, for the first time, that others see a problem with his physical appearance. Lord, please do not let such comments and stares wound his heart in damaging ways. I know, I know, there are much worse physical conditions. But I have been aware that he notices that his body is not attractive, even strange, perhaps even ugly. He feels shamed. Dagger in my heart. This is why I haven't posted any pictures. I just feel I want to protect him.
I want to write a poem, or something about the experience we had driving home from a birthday party the other day. I really want to skip the details of the party...except the last one. As we were leaving he had a major itch attack and I had to carry him out. He screamed and cried and before I knew it, he had blood all over his legs and feet. When he finally settled down five minutes later, I turned around to look at him---I was overwhelmed by his adorable, yet exhausted face resting on his carseat. I mostly noticed his bright, blue eyes which seemed to be telling me something. Suffice it to say, it was a bit more than I could handle. The Mama Bear in me not only collapses with grief and compassion, but at the same time harnesses a vigilance that promises to help him.
Not sure I can help.
I want to write more later about what God is teaching me right now re: my powerlessness. Too late now.
A major problem with insurance! I was scared to hope that we could actually go and be helped by those at NJ, but did not think it would be an insurance issue. I thought we had already covered those bases and had green lights. But, it seems that there is some code that Samuel's insurance will not cover. Regarding the billing of the actual facility---rooms, equipment, etc. He will be billed as outpatient, yet because he would be in the hospital all day/every day there is a charge re: the physical property, which, his insurance won't pay. Which would mean $6-9K out of pocket. Yikes.
I really do not know what to think. There is a part of me that still hopes. I think that's because I know he must go. I cannot keep putting these intense steroids on him, wet wraps at night and sometimes during the day, doing 20 other intense things...AND it not even seeming to help. When we go out of the house he usually wears pants so much of his flares are covered. But if I let him wear shorts, as I did today, people stop and gawk. We have had four people ask HIM what is wrong in the past couple of days. Most ask if he has chicken pox. I am sad, because he has noticed, for the first time, that others see a problem with his physical appearance. Lord, please do not let such comments and stares wound his heart in damaging ways. I know, I know, there are much worse physical conditions. But I have been aware that he notices that his body is not attractive, even strange, perhaps even ugly. He feels shamed. Dagger in my heart. This is why I haven't posted any pictures. I just feel I want to protect him.
I want to write a poem, or something about the experience we had driving home from a birthday party the other day. I really want to skip the details of the party...except the last one. As we were leaving he had a major itch attack and I had to carry him out. He screamed and cried and before I knew it, he had blood all over his legs and feet. When he finally settled down five minutes later, I turned around to look at him---I was overwhelmed by his adorable, yet exhausted face resting on his carseat. I mostly noticed his bright, blue eyes which seemed to be telling me something. Suffice it to say, it was a bit more than I could handle. The Mama Bear in me not only collapses with grief and compassion, but at the same time harnesses a vigilance that promises to help him.
Not sure I can help.
I want to write more later about what God is teaching me right now re: my powerlessness. Too late now.
Thursday, August 25, 2011
Something Wonderful
...is in the works. My pessimism tells me I ought not share it...as nothing is official yet. Quiet, sober, doubtful---so as to be less dissapointed later on...
But, as a fervent lover of hope, despite being a nominal believer of it's existence, here it is:
In the near future Samuel and I might board a plane. I will likely look haggard; Samuel will likely look like he has leprosy (due to the absence of all steroids and antihistimines the four days prior). And, as if magically, we will be transported to a place where a team of amazing people will care about him and know him by name. They will also be brilliant doctors who have the potential to truly heal his little, exhausted body.
I could go on in this fashion for awhile, but sparing you the drama, we are waiting to find out when (and if) we will be scheduled to go to National Jewish Health in Denver.
David and I have put up our white flags...we are not able to help him. Lord knows we have tried. As has our pediatrician, allergist, and dermatologist. Nothing short of a happy dose of Prednisone will do the trick. Sadly, that is a med that can't be rubbed into his inflamed skin, nor taken more than once or twice a year.
If you saw him today, you might not notice. He had on long linen pants, socks under his Keens, shirt tucked in. But even me, while bathing him tonight, almost had to look away when I caught a glimpse of his backside. He was screaming/crying because he was both itchy and hurting. He was frustrated because I kept trying to distract his mind and hands from scratching while I started to put on his wet wraps.
So, for now we are done with restricting foods like white potato, tomato, and strawberries for weeks at a time hoping to find the culprit. I am now quietening all those voices in my head that say "aha, perhaps it is this damn front-load washing machine that harbors so much mold", or "oh, maybe those new vitamins were somehow cross-contaminated with one of his allergens in the factory and THAT is it!" Done. I can't do it. I would if it were possible, but I simply cannot heal him. I know that now.
The average stay is two weeks. He will specifically be treated for his eczema while searching for the trigger. Therefore, there will be lots and lots of work done in regard to his food allergies. I feel strongly that we are missing something. A grown allergy to something like sesame, corn, or oat? Perhaps I have underestimated his dust mite allergy, and rather than sleeping on a bed at night we ought buy a cute leather couch for his room. Anyway, like I said, I am trying to put the detective Mama away and just try to love him well with all that can be known today. Leaving the detective/doctor/Debbie-downer up to the Big Dogs in Denver.
But, as a fervent lover of hope, despite being a nominal believer of it's existence, here it is:
In the near future Samuel and I might board a plane. I will likely look haggard; Samuel will likely look like he has leprosy (due to the absence of all steroids and antihistimines the four days prior). And, as if magically, we will be transported to a place where a team of amazing people will care about him and know him by name. They will also be brilliant doctors who have the potential to truly heal his little, exhausted body.
I could go on in this fashion for awhile, but sparing you the drama, we are waiting to find out when (and if) we will be scheduled to go to National Jewish Health in Denver.
David and I have put up our white flags...we are not able to help him. Lord knows we have tried. As has our pediatrician, allergist, and dermatologist. Nothing short of a happy dose of Prednisone will do the trick. Sadly, that is a med that can't be rubbed into his inflamed skin, nor taken more than once or twice a year.
If you saw him today, you might not notice. He had on long linen pants, socks under his Keens, shirt tucked in. But even me, while bathing him tonight, almost had to look away when I caught a glimpse of his backside. He was screaming/crying because he was both itchy and hurting. He was frustrated because I kept trying to distract his mind and hands from scratching while I started to put on his wet wraps.
So, for now we are done with restricting foods like white potato, tomato, and strawberries for weeks at a time hoping to find the culprit. I am now quietening all those voices in my head that say "aha, perhaps it is this damn front-load washing machine that harbors so much mold", or "oh, maybe those new vitamins were somehow cross-contaminated with one of his allergens in the factory and THAT is it!" Done. I can't do it. I would if it were possible, but I simply cannot heal him. I know that now.
The average stay is two weeks. He will specifically be treated for his eczema while searching for the trigger. Therefore, there will be lots and lots of work done in regard to his food allergies. I feel strongly that we are missing something. A grown allergy to something like sesame, corn, or oat? Perhaps I have underestimated his dust mite allergy, and rather than sleeping on a bed at night we ought buy a cute leather couch for his room. Anyway, like I said, I am trying to put the detective Mama away and just try to love him well with all that can be known today. Leaving the detective/doctor/Debbie-downer up to the Big Dogs in Denver.
Friday, May 20, 2011
For Mimi, Happy Birthday!
Looks like it has been 17 months since my last post. Our blog has certainly taken a backseat. And I am doing so now to have an easy way to post this video of my mom. It isn't even a great, or even good video...but it is the best we could do in the moment. And Mom, I think you will appreciate--in some capacity---how raw it is. Love you.
Saturday, October 3, 2009
Pics for Daddy
Well...obviously much has changed since our last post...
Eli is obviously here (Elijah August Simmons). For those who do not know, he came on 9-9-2009, weighing 7.6, 20 inches long. We are all doing pretty well and loving the new addition. Samuel had a hard first couple of days home, but now seems to love Eli for the most part. The pictures below are a little random, and mainly from the past couple of days, but wanted to post them for David, who is out of town and would love a visual update.
Eli is obviously here (Elijah August Simmons). For those who do not know, he came on 9-9-2009, weighing 7.6, 20 inches long. We are all doing pretty well and loving the new addition. Samuel had a hard first couple of days home, but now seems to love Eli for the most part. The pictures below are a little random, and mainly from the past couple of days, but wanted to post them for David, who is out of town and would love a visual update.
Thursday, September 3, 2009
Tuesday, July 14, 2009
Tuesday, June 30, 2009
Sam's First Haircut
I Love my Mama!
First cut is the deepest
Please disperse, there is nothing to see here
Halftime Break: Dum Dums!!!
Dum Dums are beginning to wear off
All Hades Breaks Loose
Ahh, Reward = rejuvenation by a refreshing fountain
Hit the dance floor, John Travolta
Friday, April 10, 2009
Bad Parenting and Grace, Part Two
24 hours later. Just a hint of what happened yesterday remains.I am tired, need to go to bed, but also feel the need to communicate what happened in our lives today. Long story short, this morning we took Samuel to the ER because he was having trouble breathing after drinking soymilk that I accidentally gave him. The whole thing was really scary, but he seems to be okay now.
Having a child with food allergies is so mind-boggling and scary. I am very diligent, always so careful what he puts in his mouth and touches, and yet, somehow I picked up soymilk instead of his usual ricemilk from Whole Foods last night. The packaging looks identical except the obvious labeling. On top of that, after he started reacting, for some reason I was so confused and didn't trust myself...and did not give him the Epi-pen when I should have. I was afraid to give it to him, to be honest. Fortunately, God was gracious. I am so thankful that we live less than 3 miles from a hospital, David was home due to it being Good Friday, and everything else that transpired served my little man. After a couple of powerful shots, he was breathing fine despite his little body looking like a burn victim.
Despite being thankful, I also just feel sad and worn out by it all. He is allergic to all the top 8 allergens (milk, eggs, nuts (peanut and tree), wheat, soy, and fish(shellfish and other). His blood and scratch tests indicate that soy is one of the least of his concerns...and we had anaphalaxis to THAT! So I just feel sad at the severity of his allergies. Praying they go away. Until then, just glad he is sleeping soundly in the next room.
Tuesday, March 17, 2009
Finally! Some New Pictures!
As many of you know, Ashley is usually the one who updates our blog. Well.... a lot has happen in the last 2 months. For starters .... we are pregnant! Well, Ashley's pregnant. (12 weeks now to be precise) Wow! We couldn't be more excited. More to come soon. In the meantime, here are some new pictures of Samuel.
Saturday, December 20, 2008
Bad Parenting and Grace
Samuel went to the doctor on Tuesday to discover two ear infections, but we were thankful to have found them early and now he seems hardly bothered by them. Also this week we have discovered that he can reach things much better than we thought.
He pulled my (cold) coffee from the table and poured a bit on himself. I didn't think much of it, was just glad it wasn't hot. Twenty minutes later he was covered in whelps on his neck and chest where the coffee touched his skin(from the small amount of creamer--yes dairy, but mainly soybean and cottonseed oil we think). We gave him a bath, hydrocortisone, and lots of Benadryl and he was okay.
Then this morning he drank an entire bottle of Motrin. Just a few hours earlier (at 6 am) I was bugged by David for having bought such a small bottle (which I absent-mindedly left opened on his dresser after giving to him). Samuel walked in the room where David and I were, very proudly, with the bottle turned upside down in his mouth. Ugh! Poison control said he would be okay and I was quickly glad that David had bought the little bottle.
We also discovered dum-dums this week. Samuel's new love! He woke up from a nap really hurting, so I gave him Tylenol and while we waited for it to do its job, I gave him a dum-dum. He mauled that thing for 15 minutes, no more tears or fussing, just pure bliss. He slobbered so much that I had to change his clothes afterwards.
The dum-dum. Note the slobber dripping from his left elbow.
After the Motrin episode the three of us went to the Peabody, thinking it would be fun to see the Christmas lights and the ducks. The bottom picture shows how restless Samuel was, he was slinking out of the chair as fast as possible.
Cute picture with my mom at Thanksgiving.
Shopping for lights
He pulled my (cold) coffee from the table and poured a bit on himself. I didn't think much of it, was just glad it wasn't hot. Twenty minutes later he was covered in whelps on his neck and chest where the coffee touched his skin(from the small amount of creamer--yes dairy, but mainly soybean and cottonseed oil we think). We gave him a bath, hydrocortisone, and lots of Benadryl and he was okay.
Then this morning he drank an entire bottle of Motrin. Just a few hours earlier (at 6 am) I was bugged by David for having bought such a small bottle (which I absent-mindedly left opened on his dresser after giving to him). Samuel walked in the room where David and I were, very proudly, with the bottle turned upside down in his mouth. Ugh! Poison control said he would be okay and I was quickly glad that David had bought the little bottle.
We also discovered dum-dums this week. Samuel's new love! He woke up from a nap really hurting, so I gave him Tylenol and while we waited for it to do its job, I gave him a dum-dum. He mauled that thing for 15 minutes, no more tears or fussing, just pure bliss. He slobbered so much that I had to change his clothes afterwards.
The dum-dum. Note the slobber dripping from his left elbow. 
After the Motrin episode the three of us went to the Peabody, thinking it would be fun to see the Christmas lights and the ducks. The bottom picture shows how restless Samuel was, he was slinking out of the chair as fast as possible. 
Cute picture with my mom at Thanksgiving.
Shopping for lights
Monday, December 8, 2008
Good Video About Food Allergies
I often read blogs dedicated to food allergies, written by mamas whose children have them. I am not at the place where I want create my own despite how helpful theirs are to me. However, I do want to occasionally share about Samuel's food allergies. They are a constant concern of David and mine. I never knew how all-encompassing a food allergy could be, much less the many that Samuel has. I think this video does a good job at communicating some of their basics. Thought you might be interested as I find that I have the desire to educate others in hopes of protecting children with food allergies.
Saturday, November 8, 2008
Thursday, October 16, 2008
Monday, October 13, 2008
I am trapped in our bedroom while Samuel is trying to get to sleep in the closet (yes, for those of you who did not know that is where he is living these days). Anyway, here are a few random pics from S's party. My nephew took much better ones which I will soon add.
Like father like son. We found a cake mix that was free of everything that Samuel is allergic to. Not quite delicious, but we think Samuel liked it.
So, trying to feed him dinner of avocado afterwards wasn't that easy. Notice how cute this outfit is. Niki made it for him; she is amazing.
Typical Emma and Samuel pics.
Like father like son. We found a cake mix that was free of everything that Samuel is allergic to. Not quite delicious, but we think Samuel liked it.
So, trying to feed him dinner of avocado afterwards wasn't that easy. Notice how cute this outfit is. Niki made it for him; she is amazing.
Typical Emma and Samuel pics.
Wednesday, October 8, 2008
Happy Birthday Samuel
Today Samuel and I met Natalie and Truman at a bookstore. It was nice to hold her tiny five-week-old as it reminded me of what life was like a year ago, and the months in between then and now.
366 days and 27 hours (of labor) ago, Samuel was born. Of course our lives quickly changed in ways we never could have imagined. It would sound sweet to say that I love him more than I imagined, but that is not true. Almost from the beginning I felt very deeply for this little man that was growing inside me and have never felt otherwise. I am thankful for this as I know it is an unusual gift of God’s grace.
I always wondered if, though I married late and subsequently had a baby later than most, I was made to be a mom. So much of childrearing is right up my alley. However, I have been surprised at how much I fail and feel awkward and ill equipped. As is typical, I have longed to be less regimented and more laid back, as I now believe the best moms are. From the very beginning my type-a personality fought to take away my joy. I spent my entire maternity leave—through tears and on my knees—looking for a way not to go back to work. I unproductively worried about sleep schedules, reflux, food allergies, and how being this kind of parent negatively affected my relationship with David…just to name a few.
And Samuel has grown into a beautiful little man in spite of myself. He is sweet and fun and always makes me proud. (Unless of course I count the many times I allow myself to wake up each night with him, despite his age and weight.) Today it has been nice to quietly celebrate God’s endurance and kindness to our small family. There is a lot to say, but at the moment all is inarticulate. So I will leave you with a few pictures. We are having a little party on Saturday, but he opened a few presents today.
This was taken early this morning when Emma gave Samuel her gift--a a baby doll, which David is really excited about.
This is actually from a week ago, but I thought it was cute. Playing on the trampoline.
366 days and 27 hours (of labor) ago, Samuel was born. Of course our lives quickly changed in ways we never could have imagined. It would sound sweet to say that I love him more than I imagined, but that is not true. Almost from the beginning I felt very deeply for this little man that was growing inside me and have never felt otherwise. I am thankful for this as I know it is an unusual gift of God’s grace.
I always wondered if, though I married late and subsequently had a baby later than most, I was made to be a mom. So much of childrearing is right up my alley. However, I have been surprised at how much I fail and feel awkward and ill equipped. As is typical, I have longed to be less regimented and more laid back, as I now believe the best moms are. From the very beginning my type-a personality fought to take away my joy. I spent my entire maternity leave—through tears and on my knees—looking for a way not to go back to work. I unproductively worried about sleep schedules, reflux, food allergies, and how being this kind of parent negatively affected my relationship with David…just to name a few.
And Samuel has grown into a beautiful little man in spite of myself. He is sweet and fun and always makes me proud. (Unless of course I count the many times I allow myself to wake up each night with him, despite his age and weight.) Today it has been nice to quietly celebrate God’s endurance and kindness to our small family. There is a lot to say, but at the moment all is inarticulate. So I will leave you with a few pictures. We are having a little party on Saturday, but he opened a few presents today.
This was taken early this morning when Emma gave Samuel her gift--a a baby doll, which David is really excited about.
This is actually from a week ago, but I thought it was cute. Playing on the trampoline.
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