tag:blogger.com,1999:blog-77324747075463926542024-02-06T23:42:50.793-08:00Carter's FPIES MazeCarter is our youngest son. He's the baby and the one who makes everyone smile. He also happens to suffer from FPIES or Food Protein-Induced Enterocolitis Syndrome, a chronic illness. FPIES is not who he is, but it will shape who he will become. We are journeying through this maze together; helping, learning, discovering, educating and trying not to miss those special moments along the way.Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.comBlogger74125tag:blogger.com,1999:blog-7732474707546392654.post-10086282633537294142013-06-21T15:42:00.001-07:002013-06-21T15:42:13.649-07:00A Picture's Worth a Thousand WordsMay 30 was Carter's 4th birthday. It was also one year and 7 months since his first day of GAPS. And it was another big milestone for him. It was the first day we could say he was no longer on GAPS. He was healed. GAPS had done it's job, and what an amazing job it did. <br />
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Carter's 3rd birthday was a foodless celebration. He had a cake made of presents and a cupcake candle on top of his honey-drizzled shaved ice. <br />
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This year it was something completely different. On the menu were typical, ordinary preschool foods. Yet, they were three foods he had never had before, not even a taste of them, for fear of the after effects. <br />
A peanut butter and jelly sandwich. An ice cream cone. And store bought birthday cake. Nothing was homemade. No ingredient labels were studied. Best of all, no side effects were seen, except huge and happy smiles. He went from consuming nothing but meat broth, boiled lamb and beef and pureed pumpkin to being able to walk up to an ice cream counter and pick out whatever flavor he wanted. What a difference a year makes!<br />
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If you haven't been following his story, you may be wondering how bad he could have been. Did we really need GAPS? Is that what really saved him? It's said that a picture is worth a thousand words and in this case I believe it's true. You don't need to read every post I wrote to know where we have been . I am sharing these photos for those of you who are wondering if GAPS is right for you . For those of you who are just starting on the path and are scared and overwhelmed. This was our live before: <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk_ZwP2OC6swnWa1b6HuxBjF61_kymvBZmkmGh3ji5yf7hB_pkyY2YOu2T8mKlwciM4WfqWCYI9tCaWJYhQ6EOR6JETJTow9exzjU58NFT2ZXFcmoonsQjFW6eLYZ_0bkEE89Iq84fpiQ5/s1600/IMG_1132.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk_ZwP2OC6swnWa1b6HuxBjF61_kymvBZmkmGh3ji5yf7hB_pkyY2YOu2T8mKlwciM4WfqWCYI9tCaWJYhQ6EOR6JETJTow9exzjU58NFT2ZXFcmoonsQjFW6eLYZ_0bkEE89Iq84fpiQ5/s200/IMG_1132.JPG" width="200" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRqznU-1MF-FYGHsCtjGAI9RQNBgAbMKOUuMPT9yBfvD031A8zCOl2nxYXdN6pZYy2s0P1WlgMgcSO3_cxfrx6hfg8zGbxA3Eb3Mo8Te-WHcS2JRyRDgBzOGsZsQoBdyfrz21uHYkmD0Fl/s1600/IMG_1136.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRqznU-1MF-FYGHsCtjGAI9RQNBgAbMKOUuMPT9yBfvD031A8zCOl2nxYXdN6pZYy2s0P1WlgMgcSO3_cxfrx6hfg8zGbxA3Eb3Mo8Te-WHcS2JRyRDgBzOGsZsQoBdyfrz21uHYkmD0Fl/s200/IMG_1136.JPG" width="200" /></a><br />
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A scope at 15 months to look for causes of bloody stools and lack of weight gain and a reason behind his failure to thrive.<br />
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Hospitalized at 20 months for severe upper respiratory infection caused by topical food reactions. <br />
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Hospitalized at 2 and a half for a massive intestinal blockage. His intestinal tract did not know how to process and work correctly.<br />
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A little boy who was too tired from just trying to survive. A little boy who endured countless tests and doctors appointments. A little boy who never played for very long. A little boy who had a limited quality of life for his first three years. <br />
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This is our boy today. All smiles. All energy. All noise. All the time. He's a typical four year kid. I've said it before and it still rings true. GAPS is Hope. It's hard. It's scary. It's exhausting and will probably remind the hardest thing I've ever done in my life. But almost 2 years later, so much of the Hard is a blur, replaced by this magical little face greeting me in the morning and asking. "Momma, I want a new food that I never ever had before". And I get to say, YES!Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com5tag:blogger.com,1999:blog-7732474707546392654.post-59849562056725265062013-01-29T09:45:00.003-08:002013-01-29T10:40:44.578-08:00The time has come<br />
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<span style="font-family: Calibri;">Three years and 8 months since Carter John Dyck was born.
Three years and 8 months since Carter threw up for the first time. Two years
and nine months since Carter nearly died for the first time. Two years and 3
months since I started writing this blog. Two years since Carter was
hospitalized for the first time. One year and 3 months since we started GAPS.
One year since Carter’s last FPIES reaction. </span></div>
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<span style="font-family: Calibri;">We have reached a new place in our lives, a place where Fear
does not reign over our lives. A place where Food is does not control our
lives. A place where Crayons, Markers, Palydoh and Paint are no longer enemies.
A place where Sleep is not an exception to the rule. A place where “Just a
Taste” doesn’t mean a trip to the ER. A place where the nebulizer doesn’t live
on the kitchen counter. A place where screams of pain do not fill our home. A
place where days are spent playing and laughing. </span></div>
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<span style="font-family: Calibri;">What is this new place, you ask? It is the land of GAPS. The
land of Healing. The land of Hope. We have sailed across stormy waters and turbulent
seas to get here. We’ve endured more than we ever thought possible. And we have
left the land of FPIES . . .<span style="mso-spacerun: yes;"> </span>FOREVER. We
will not be returning to that darkness. We have found Life for our little boy. </span></div>
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<span style="font-family: Calibri;">Fear has kept me from uttering these words for far too long.
The FPIES mindset is a hard one to overcome. When you live in fear 24/7 for
over 2 years, it’s hard to imagine you could ever come to live in the land of
Healing. But we are here. And we are never going back to the land of FPIES. </span><br />
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<span style="font-family: Calibri;">I want to end this by thanking YOU for being on this journey
with us, for helping and supporting us as we found our way through the maze
that was Carter’s life. YOU have helped save this little boy and our family.
YOU gave us strength when there was none and hope and help. Thank you!</span><br />
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Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com3tag:blogger.com,1999:blog-7732474707546392654.post-69334322995165904172012-10-18T15:05:00.001-07:002012-10-18T15:05:40.097-07:00One Year!
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<span style="font-family: Cambria;">October 28, 2011: Carter’s first day of GAPS. That was
almost a year ago! So much has happened in that year. Today this is an update
for all of you who have hoped with us along the way, and it is hope for so many
of you who are starting this GAPS journey.</span></div>
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<span style="font-family: Cambria;">This past year has been a whirlwind of changes.<span style="mso-spacerun: yes;"> </span>When we started this change for Carter, who was 2 and a half at the time, we had
no idea how long it would take or what it would do to us. Would it bring us
together or would it rip us all apart? Those first 3 weeks were some of the
scariest days of my life. The fear that I had made the wrong choice was
tangible. I swear it sat there in the room with us. <span style="mso-spacerun: yes;"> </span>I wasn’t sure he would ever eat normally. He
ate the same 3 things day in and day out. Week after week. Month after month. Shortly
before starting GAPS, he stopped growing and gaining weight. He didn’t make any
changes for a YEAR! He wasn’t talking like he should have been. His coordination
was lacking. </span></div>
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<span style="font-family: Cambria;">So what did we do? We waited. We tried adding in GAPS
approved veggies and they failed. We tried changing up his diet at all, and it
failed. And that’s the way it needed to be for him. That was what his body
needed. How I wish I had trusted and listened to what his body was telling me, in
those early months. Sure having a 2 year old whose diet was so very limited was
hard. Trying and pulling foods over and over was hard too. So I stopped. He was
eating pumpkin, butternut squash, zucchini, beef, lamb and wild game. And that
was it. And I didn’t try more. I let his body lead me. We did this for months. And
months. And I stopped listening to people tell me that I wasn’t doing GAPS the
right way. Rule number one of GAPS, it is an individual diet. You have to
follow the stages in a way that works for you. I ignored the doctors who
insisted time and again that his body needed formula. And then something
happened . . . he grew! An inch in 3 months! Without commercial formula. Without
growth hormones. Without synthetic vitamins. With nothing more than real food. </span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">And something else happened. I got brave with food.<span style="mso-spacerun: yes;"> </span>Something in me, something in him, told me to
try. When he asked for foods that were somewhere, anywhere on the GAPS approved
list, I gave them to him. And his body didn’t react. He didn’t shut down. He
slept. He smiled. He pooped. And he ate more. When he asked for potatoes, I
gave him some.<span style="mso-spacerun: yes;"> </span>And nothing happened. </span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">We are going at a steady pace, allowing his diet to expand. He’s
eating broccoli, turnip, apples, blueberries, strawberries, hot dogs, carrots,
watermelon, an occasional potato, and bananas; along with all the other foods
he was eating. He still loves his broth. He still loves his meat. And he loves
that all this food is HIS!</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">GAPS has given me the gift of really learning and
understanding his body. Carter still sneaks food, and when he does, he gets a
rash on the back of his neck. And he gets a little backed up. But he DOESN”T
vomit. He DOESN’T get upper respiratory infections. He DOESN’T have 20 trips to
the potty. He DOESN”T have bleeding, burning skin. </span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">So what does this all mean? It means GAPS worked. It means
GAPS works. It means that I may soon be able to say that Carter once HAD FPIES.
It means that we are going to try dairy again soon. </span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">If you are thinking about trying GAPS, do it!! If you’re
lucky enough to have found it while your little one is still a baby, even
better! Try the homemade formulas or Baby GAPS, if your little one is old
enough.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">If you have started GAPS with your child, and you are still
in the darkness and confusion that GAPS brings, DO NOT GIVE UP! Don’t let the
doctors or your family or your friends or the stranger in the store tell you
what’s best for your child. You know what’s best your baby. You really really
do.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">For every excuse, every road block to GAPS, there is an
answer. Once you make the choice, the answers will come. I have learned that Home
has nothing to do with the walls that surround you. I have found joy in feeding
my family real food. I know what it means to be Strong now. I have felt what it
means to be truly, unconditionally loved.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">For me, I had to hit rock bottom with Carter’s health before
we started GAPS. I knew that Carter was going to die if we did nothing. I was afraid
GAPS would kill him with all its meat and bone broth. So what did I have to
lose in trying? If I didn’t try, we would lose Carter.<span style="mso-spacerun: yes;"> </span>If I did try, he might live, might grow,
might thrive. And he did. And he has. And he is. He really is. It’s still a
journey and it may always be, but now I think I know where we are going.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<o:p><span style="font-family: Cambria;"> </span></o:p></div>
Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com3tag:blogger.com,1999:blog-7732474707546392654.post-85435896003918557622012-08-07T14:56:00.000-07:002012-08-07T14:56:02.409-07:00"I'm moving on. At last I can see, Life has been patiently waiting for me."<span style="font-family: Cambria;"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">“I
once was lost, but now I’m found. Amazing Grace, how sweet the sound.” I heard
this song last night and it awoke something in me. It has been awhile since I
last updated this blog. Carter turned 3, summer vacation began and somewhere in
it all, I lost my way. I was struggling with, well, everything. I was losing my
faith in the GAPS diet. After numerous doctors telling me that the reason he
wasn’t growing and gaining was simply because I wasn’t feeding him correctly.
They threw formula at me, brushing aside my concern about it nearly killing him
and telling me that if I wanted him to grow, this was my only option, that or a
TPN (Feeding through an IV tube) They were trying to scare me, and it worked. </span><span style="font-family: "Times New Roman","serif"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt;">
<span style="font-family: Cambria;"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I
stopped calling friends, for fear that they would recognize instantly in my
voice that everything was not “Alright”, as I so often told them. I was
overwhelmed and lost and scared. We tried to introduce some old safe foods, for
Carter. Some failed horribly, while others were a nice addition. They didn’t follow
the GAPS stages strictly, but they were GAPS legal foods. We learned the hard
way thorugh stolen food, that corn was a big negative for Carter as well, a
food he practically lived on through the second year of his life. </span><span style="font-family: "Times New Roman","serif"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Cambria;"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">On
top of all of that was the constant fear of another impaction. In June he was
x-rayed again and it showed that he was yet again impacted. I felt like I had
failed him. The GI doctor wanted him on Miralax, and a high dose too. Miralax
is essentially plastic that the body can’t digest. He was a little boy with a
super sensitive GI tract and they wanted him on plastic?!? For the next 6
months to a year to help retrain his intestines to move stool through. I hated
the idea, but what choice did I have? The fear was paralyzing. I knew GAPS had
a constipation protocol, but it would take time. And I wasn’t sure we had that.
So we started the Miralax balancing act. Too much and he got stomach spasms and
pain, too little and didn’t pass much, although he tried and tried. And cried.</span><span style="font-family: "Times New Roman","serif"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt;">
<span style="font-family: Cambria;"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Just
when I thought my plate was too full and I couldn’t possibly take another step,
I was thrown an incredibly painful and scary curve ball. My oldest son, who is
6, began to have worsening behavioral issues. It made FPIES seem like a walk
along a beautiful sunlit beach. I spent countless hours researching and
reading. We were either at the doctor or on the phone with one, every single
day. It was a living nightmare for everyone in our home. It made struggles with
food seem so trivial and unimportant. I just wanted everyone to be happy again.</span><span style="font-family: "Times New Roman","serif"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<span style="font-family: Cambria;"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">As
we worked through this new obstacle, my guilt over Carter began to lessen. I
took some of the great advice I had received and positive feedback from others
and took some big steps to help Carter’s impaction issues without Miralax. We
introduced fermented coconut water and apple cider vinegar. There were
improvements right away and signs that I was doing the right thing for Carter,
even if the doctors didn’t agree. He is still on the Miralax, but I am hoping
it is on it’s way out.</span><span style="font-family: "Times New Roman","serif"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span><br />
<span style="font-family: Cambria;"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"></span></span><br />
<span style="font-family: Cambria;"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">We
survived through this chaos and I believe we are a better family for it. Our
marriage is stronger and our lives are fuller. I set out this summer vacation
with so many expectations, so many things I wanted to do for our family. Life
had other plans for me, for all of us. </span><span style="font-family: "Times New Roman","serif"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt;">
<span style="font-family: Cambria;"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">With
school less than 2 weeks away, I’ve started to pull myself back up. I no longer
feel numb and overwhelmed. I am truly excepting my life, with it’s
imperfections. I am allowing myself to fail without guilt and to start anew
every morning. And I am reminded that I am not alone in this, even when it’s
literally impossible to leave the house.</span><span style="font-family: "Times New Roman","serif"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
<a href="http://motherhealer.blogspot.com/2012/08/the-beautiful-act-of-cleaning-broth-pot.html"><span style="color: blue; font-family: "Times New Roman","serif"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">http://motherhealer.blogspot.com/2012/08/the-beautiful-act-of-cleaning-broth-pot.html</span></a><span style="font-family: "Times New Roman","serif"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">An amazing
blog post from a fellow GAPS mom, whom I have never met, who helped me see the
joy in making that much dreaded broth. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 10pt;">
<span style="font-family: Cambria;"><span style="mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">And
those moments when all 3 of my little wonders are laughing and giggling, well
their noise is infectious and I’m allowing myself to slow down and giggle too. </span><span style="font-family: "Times New Roman","serif"; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com1tag:blogger.com,1999:blog-7732474707546392654.post-66115503168521432312012-05-07T14:04:00.002-07:002012-05-07T14:04:15.176-07:00An Update or A Rant, or Possibly Both.<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Georgia, "Times New Roman", serif;">Carter’s peace from
pain lasted for all of 24 hours. WE learned after a GI appointment that he had
a stool impaction. So we tried to clear it. With Milk of Magnesia. With
Miralax. With enemas. With Dulcolax suppositories. He was taking Tylenol around
the clock and Zofran to help him sleep. We had another x-ray done. The
impaction was considerably worse. This entire time, over a week, we were trying
to clear him out, and he was going. Apparently it wasn’t enough.<span style="mso-spacerun: yes;"> </span>So we tried magnesium citrate. That’s the
stuff they give before a colonoscopy to clear you out. IT still wasn’t working.
He was still in pain. We saw the GI on Thursday, April 19. I practically begged
him to admit Carter and clear him out at the hospital. I was getting scared
doing this at home. He was showing dehydration signs and was still in a TON of
pain. The doctor said to wait another 2 to 4 days. If Carter was still in pain,
call and they’d get him admitted. </span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Georgia, "Times New Roman", serif;">I called Sunday morning, as we hadn’t seen any improvement.
They got us a room ready at 1 pm. We were checked in and settled by 2:30. IV
fluids were started and blood work and x-rays were taken to give us a baseline
to compare his progress. The process of cleaning him out involves placing an NG
tube, a small tube inserted in the nose that goes down into the stomach, and
pumping him full of a product called GoLytely.<span style="mso-spacerun: yes;">
</span>This works similar to a garden hose on a dried up pile of dirt. It
washes over the impaction, eventually ridding it all from the body. The first attempt
at the NG tube was a complete failure. They used no numbing agent, couldn’t get
it placed correctly and caused him to bleed. We made the decision to stop and
see if it could be done with some sort of sedation. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHSkfc9rjp6Xu5VKwkuIo8TqE565nBQOyW6hA6N9uyVJR9Ko9Cyxs8R3fxgNRQz1kr14LIvjTPw-HXLlfVTxZ42CKU7IG9vmtJLTxWf9CSaWjaqAg-xp58tWj-yV9WSdeZF5V1CXTZxeMp/s1600/564235_3502236526650_1593813340_32716486_1594579032_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHSkfc9rjp6Xu5VKwkuIo8TqE565nBQOyW6hA6N9uyVJR9Ko9Cyxs8R3fxgNRQz1kr14LIvjTPw-HXLlfVTxZ42CKU7IG9vmtJLTxWf9CSaWjaqAg-xp58tWj-yV9WSdeZF5V1CXTZxeMp/s320/564235_3502236526650_1593813340_32716486_1594579032_n.jpg" width="240" /></a></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Georgia, "Times New Roman", serif;">The next morning we met with an amazing GI, or so we
thought, who wanted to get Carter thoroughly checked out with GI,
Endocrinology, Allergy and Immunology to help find both the cause for the
impaction and look into his lack of growth. They were going to schedule a lower
endoscopy as well.<span style="mso-spacerun: yes;"> </span>The NG tube was successful
put in the second time around using medication to help Carter relax.<span style="mso-spacerun: yes;"> </span>The GoLytely was started Monday afternoon
around 3:30.<span style="mso-spacerun: yes;"> </span>It is supposed to take
approximately 4 hours to work. It took TWELVE hours before anything happened.
Is it because he was so backed up or because there is an issue with his bowls?
We don’t know. Why don’t we know? That’s the BIG question.</span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Georgia, "Times New Roman", serif;">The doctors were great, until I mentioned FPIES and
specifically his shock reactions. Once I told them that, the doctors gave up on
helping us in any way beyond clearing the impaction. The lower endoscopy was
canceled. None of the specialists ever came to see us. The GI doctor NEVER came
back. </span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Georgia, "Times New Roman", serif;">It took 36 hours for Carter to clean out. <span style="mso-spacerun: yes;"> </span>A painful process that I will spare you the
details. Just know it involved full linen change of the bed every time he
pooped. By Wednesday afternoon, Carter wanted to get up out of bed and play for
the first time since we got there on Sunday.<span style="mso-spacerun: yes;">
</span>He was feeling and looking so much better.</span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Georgia, "Times New Roman", serif;">The pediatrician working at the hospital came in to get a
progress report and to see about sending us home. What happened to the other
tests they were going to do? What happened to the rest of his care? She told me
that since he’s not really going into shock i.e. anaphylactic shock, that I was
unnecessarily restricting his diet. That his FPIES diagnosis wasn’t a REAL
diagnosis at all. His impaction was purely my fault for not feeding him and his
lack of growth was due to malnourishment. </span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Georgia, "Times New Roman", serif;">She went on to say that we needed to have him followed by a
GI doctor who could help figure out his digestive issues and make a real
diagnosis. </span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Georgia, "Times New Roman", serif;"><span style="mso-tab-count: 1;"> </span>Oh, you
mean the GI doctor who told us he was growing fine and to just keep doing what
we were doing? The GI doctor who told us there wasn’t anything wrong with him?
Ok, I’ll make another appointment. </span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Georgia, "Times New Roman", serif;"><span style="mso-tab-count: 1;"> </span>Have we
tried Elecare Jr? Yes, he reacted to it. No, it wasn’t that he didn’t like the flavor;
it made him throw up and poop blood. Should I have continued it?</span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Georgia, "Times New Roman", serif;"><span style="mso-tab-count: 1;"> </span>I asked
the pediatrician if she’d like to call the doctor at Stanford who gave us the diagnosis.
No, she didn’t think that would help her at all. </span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Georgia, "Times New Roman", serif;"><span style="mso-tab-count: 1;"> </span>She
gave us the green light to go home and we RAN. <span style="mso-spacerun: yes;"> </span>Carter didn’t fit into their little box of
what was accepted, so instead of expanding their box to include him, they threw
him out. They pushed ALL the blame on me and walked away. We have since filed a
complaint with the doctors on staff and have a plan in place for any further
visits to that hospital. I won’t have my child’s care limited because some
doctor or 4, think I’ve made this all up. Type “FPIES” into any search engine
and you can see it’s a real issue. The word shock sent them running. So call it
whatever you like, but he goes completely unresponsive when he eats certain
foods. </span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-indent: 0.5in;">
<span style="font-family: Georgia, "Times New Roman", serif;">I will say that the rest of the
hospital staff was amazing and made our stay as enjoyable as a hospital stay
can be. We have since found another Endocrinologist who thinks that the fact
that he hasn’t grown in almost a YEAR, is a BIG deal. She’s running some
further tests on his liver function as well. She had the same blood work
results as the doctors did in the hospital. The doctors looked at his numbers,
with levels that were troublesome, and dismissed it all. <span style="mso-spacerun: yes;"> </span>OUR pediatrician was outraged and dumbfounded
that anyone could look at his blood work and growth chart and NOT see a
problem. </span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-indent: 0.5in;">
<span style="font-family: Georgia, "Times New Roman", serif;">We have an appointment with GI in
June and appointment at Stanford with our Allergist in late July. We are also
working on getting an appointment with a Stanford GI who might take this all
more seriously. Otherwise we will go into our GI appointment in June armed with
all the information she will need to take him seriously. Or we will walk out.
The gloves are off. </span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com8tag:blogger.com,1999:blog-7732474707546392654.post-89168605881366621452012-04-11T08:53:00.002-07:002012-04-11T08:53:30.758-07:00The Storm Has Hit<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">A year ago yesterday we were sitting in a doctor’s office in
New Jersey. That started a new chapter of doctors and specialists and tests. We
closed that chapter and found ourselves in a time of quiet for Carter, a time
where we thought we had found our normal.<span style="mso-spacerun: yes;">
</span>We were sailing along. But that storm I mentioned in my last post found
us and has hit us hard.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">We spent yesterday in the ER with Carter. His tummy pain had
gotten increasingly worse, causing him to vomit. The screaming was just too
much so we took him to get help.<span style="mso-spacerun: yes;"> </span>Part of
me is still surprised that they helped him. Maybe it was the letter I bought
from the doctor explaining what FPIES is and how to treat a reaction, although
he wasn’t having a reaction.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">We got right in, no waiting. They drew blood, placed an IV
line and did an ultrasound. They gave him Zofran for nausea and IV fluids.
Within 10 minutes of the Zofran entering his system, he began to perk up! And
let me tell you, I was terrified! Giving him a new medicine, risking a
reaction. But we were already in the hospital and that seemed like the safest
place to have a reaction. But there was no reaction, just a happy Carter. It’s
been so long since I’ve seen a happy Carter! </span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">We went home that afternoon, after being told the ultrasound
and blood work both came back normal. Our pediatrician called to check on us in
the ER and has already called this morning. We have an appointment on Friday
with a new GI doctor. We are determined to find the cause of all this pain. </span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">Since to Zofran worked so well, it makes me wonder if some
of him tummy pain complaint, is his way of communicating that he’s nauseas. Either
way, it helped and so did the IV fluids. He slept ALL night last night, from 7
pm to 7 am, ALL NIGHT!</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">He is a happy boy this morning. No crying or fussing. But I
must be careful what I say, that’s how yesterday started. <span style="mso-spacerun: yes;"> </span>It’s the Murphy’s Law of Moms. If you deep
clean something, they will throw up on it. If you comment on how well they are
feeling, they will get sick. Well he threw up all over the newly cleaned couch
cushion after I’d said he seemed to be feeling much better yesterday. <span style="mso-spacerun: yes;"> </span>So today I will just enjoy the happy moments
and hope they stay awhile!</span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com1tag:blogger.com,1999:blog-7732474707546392654.post-9101567533476503822012-04-03T19:35:00.001-07:002012-04-03T20:02:51.308-07:00The Calm Before The Storm<br />
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<span style="font-family: Cambria;">I’ve been debating putting this update on here for silly
reasons, like fear of judgment, but there have been several people asking for
updates, and this blog is about Carter’s journey through this maze, so here ya
go!</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">Carter hasn’t gained any height in 7 months, which is
concerning. He has gained weight but is having trouble keeping it on; he keeps
bouncing between 27 and 29 pounds. He has been 27 pounds since September. His
pediatrician did a blood work up on him to test for metabolic disorders. </span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">Due to the results, we have been referred to a Pediatric
Endocrinologist. They are concerned with his Growth Hormone levels. Two tests
were run and both came back on the low end of normal. These tests are not very
reliable on kids under 5, so that is why we will be looking further into this
to make sure we aren't missing anything. Luckily this specialist is local and
our Pediatrician has already talked with her over the phone.<span style="mso-spacerun: yes;"> </span>Our appointment is scheduled for April 20. </span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">The testing also showed that there are still high levels of
inflammation in his body. His numbers were 3 times higher than the normal
range. Normal is 0 to 15. He tested at a 55. The test is called an ERS. The
test only tells us there is generalized inflammation, and not the cause of it.
This does help explain the chronic pain he has been in lately. Our pediatrician
thinks that this may be telling us that his gut issues are not as well
controlled as we thought. This may mean we go back to Stanford, but I'm not
sure yet. </span></div>
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<span style="font-family: Cambria;">Thankfully our Pediatrician is taking this very seriously
and thinks it's time to look further into any other issues that may be
affecting Carter. We also saw a Child Psychiatrist who is helping us deal with
Carter's crazy food stealing. He is also taking this all very seriously and
seems like he will be a good advocate to have on our side. </span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">So, all of this to say, there may be something else going on
and there may be nothing else going on. But the doctors are looking! Thank
goodness!</span></div>
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<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">Why was this so hard to post? Because when I first got the
call from our doctor, I cried. And cried. And cried. I couldn’t even talk about
it. My mommy instinct says there is something else going on. It has said that
for months. And now finally, the doctors see it too. Those test numbers show
that my little one really IS in pain, ALL. THE. TIME. His growth stale started
before GAPS and even though he’s eating a good deal of food, it’s still not
breaking the stale. <span style="mso-spacerun: yes;"> </span>He wakes up
3,4,5,6,8,10,12 times a night complaining of pain or just screaming. He doesn’t
need new clothes or new shoes for the summer because everything from last year
still fits. A soon to be 3 year old in 18 month clothes. At least he likes
those summer shirts! </span></div>
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<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">So now we wait for the next wave of our medical saga. We
slowed down for awhile and things seemed to have calmed down. Now I realize,
that was just the calm before the storm. </span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com3tag:blogger.com,1999:blog-7732474707546392654.post-46748557284261092642012-03-08T15:17:00.003-08:002012-03-08T15:17:47.647-08:00The Pile<div class="MsoNormal" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">“Mom, I’m out of underwear!” “Mommy, this is my last clean shirt!” “Mom, I don’t have any pants.” </span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">“Honey, are there clean socks for me somewhere? Clean underwear?”</span></div>
<div class="MsoNormal" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">This is an everyday occurrence in our house. The boys even know to tell me when they are running low on underwear so I can make sure to wash some for them. Laundry has fallen by the wayside, way, way, way by the wayside. The clothes get washed, but getting folded and put away is a whole other story. </span></div>
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<span style="font-family: Cambria;">There was a time when this would have driven me crazy. I would have stayed up at night until it was all put away. I would have never even let it get this far in the first place. I would have made the time for the laundry. I would have been embarrassed for all of you to see this, and the huge pile of dirty clothes in our closet that need to be washed. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh87g_XAOCYAgWE78o2LE6xgacZwJhcP6MiF5NXji0RbG9xvWeFobVLpmjiKy6zhgZ0NfwURaC8bkaSg_jyUj8eLGp-MIRurbnCwrPzIzqgPYr_DceZXVmdjGQhrjG0yav1TNiL8CrIOmfi/s1600/laundry.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh87g_XAOCYAgWE78o2LE6xgacZwJhcP6MiF5NXji0RbG9xvWeFobVLpmjiKy6zhgZ0NfwURaC8bkaSg_jyUj8eLGp-MIRurbnCwrPzIzqgPYr_DceZXVmdjGQhrjG0yav1TNiL8CrIOmfi/s320/laundry.JPG" width="320" yda="true" /></a></div>
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<span style="font-family: Cambria;">I could offer up excuses about a sick kid and a tired mom. Or lack of proper planning. Or ill-placed priorities. Or too much time in the kitchen. Or so many other things. This isn’t about excuses. This is about real life and it is what it is, and nothing more. </span></div>
<div class="MsoNormal" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">It’s true that Carter does go to preschool twice a week and he does go to bed at 7 pm. It’s true that my husband gets home around 5:30 and sometimes he even works from home. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>It’s true that there is time in the day to get this done. It’s also true that those moments when Carter is asleep, he is also safe. Sleeping is safe. He cannot use his ninja skills while he’s sleeping. At least not yet. </span></div>
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<span style="font-family: Cambria;">So for now, this is my life. And I’m ok with it. If it bothers someone that my kids might have wrinkled clothes, well they are more than welcome to come put the clothes away and straighten up the laundry room and dust the ceiling fans and the banister and the window blinds while they're at it.</span></div>
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<span style="font-family: Cambria;">For all of you sitting there with your own mountain of laundry staring at you, just dump the next basket of clothes on the pile, dig through and find something that matches, fluff the wrinkles out in the dryer and keep going with your day. The pile will be there tomorrow, but that little voice asking you to read one more story just can’t wait. So go read that book. And after the kids go to bed, just turn the light off on that pile, find your husband and snuggle up bed. The laundry really CAN wait!</span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com4tag:blogger.com,1999:blog-7732474707546392654.post-6455346693113109362012-02-24T10:52:00.000-08:002012-02-24T10:52:14.206-08:00A Poison Plan<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">FPIES presents so many situations that I never would have considered.<span style="mso-spacerun: yes;"> </span>2 days ago Carter was in the garage and got hold of some chemicals. In his obsessive desire to eat anything and everything, he ate some. How much? I wasn’t sure, but it obviously didn’t taste good and he spit it out. We quickly consulted the product about what to do in case of ingestion.<span style="mso-spacerun: yes;"> </span>The product said not to induce vomiting and to give the 2 glasses of milk or water. I washed his mouth out and got him to drink some water. I don’t think he swallowed any and is doing just fine. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">But this got me thinking, what are the common recommendations for ingesting chemicals? After some research, there are a lot of recommendations to consume 2 to 4 glasses of milk and eat bread. A simple solution for your average kid, but a terrifying prospect for an FPIES or other food allergic child. It then becomes a game of the Lesser of Two Evils. What will the chemical do to my child? I know what consuming that much milk or bread will do to him; weeks of pain, <span style="mso-spacerun: yes;"> </span>loose stool, rash, inability to absorb nutrients, weight loss, sleepless nights, respiratory infection, the list goes on and on. Certainly some chemicals can cause serious side effects as well, but a lot of these household products expect that you treat these things at home, that they aren’t too serious. For us, they would be very serious. I think our only choice would be to call an ambulance and have him admitted so they could pump his stomach. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">Until a couple days ago, I never even thought to have a poison plan for Carter. I thought I’d just contact the Poison Control Center and follow their lead. Now I realize that Carter’s situation is outside of that box as well. We have been walking this maze for almost 3 years, and I am still learning as I go. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">All products have an MSDS, Material Safety Data Sheet, and by law they must be available for free. You can find them by searching “MSDS” and the name of the product in your internet search engine. The Poison Control Center is available 24/7 at 1-800-222-1222. They also have an iPhone app that will connect you directly to the poison control center with the push of a button. You can find the app by searching “poison help”. The app is free. Do you have a plan for your child?</span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com2tag:blogger.com,1999:blog-7732474707546392654.post-62945120111684792162012-02-15T16:03:00.000-08:002012-02-15T16:03:26.646-08:00A Probiotic Update<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Cambria;">Sorry I haven’t updated in awhile. We’ve been plugging along here. We had to pull spinach because his tummy just isn’t ready for it. He can only do it in small quantity every once in a while. We FINALLY got him started on a probiotic, which will help his body fight the bad bugs in his intestinal system and build up more good bugs. We are moving very slowly, but his body is adjusting well. We used the recommended dose of one capsule and spread it out over 8 days.<span style="mso-spacerun: yes;"> </span>We have seen some symptoms: eczema flares on his face and little red painful bumps sporadically spread across his body. The worst of these has been the rash that’s developed from his urine. The areas where his pee comes in contact with his skin turns into small red welts. On bad days, it hurts when he pees and his entire groin is covered in rash. We’ve made great friends with Aquaphor, or as Carter calls it, Butt Jelly! As difficult as this is to watch, it really is a good sign. It means his body is ridding toxins through his urine. It means the probiotic is working. It means we are making progress.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHbWBzlEPSmuY635NeD7r7Q0d9UywWXV_Yssg_zteHkLTbgKoc30WAJ1ZbBctEQFNPmSujVli_778_RrKfcNPqp9ATzLMTuVkwI-lKWvDR2DAQsHhX77wvdhQZuwL40J7dOWPp7mzX23nX/s1600/photo.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHbWBzlEPSmuY635NeD7r7Q0d9UywWXV_Yssg_zteHkLTbgKoc30WAJ1ZbBctEQFNPmSujVli_778_RrKfcNPqp9ATzLMTuVkwI-lKWvDR2DAQsHhX77wvdhQZuwL40J7dOWPp7mzX23nX/s320/photo.JPG" width="240" yda="true" /></a></td></tr>
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<span style="font-family: Cambria;">Our other big news is that Carter has hotdogs!! We spend last Saturday making Carter homemade sausages, which he calls hotdogs, a snack just like his brothers. We stuffed them with safe ground beef, a little onion and some salt and pepper. Then Daddy smoked them, so now Carter has smoked hotdogs. He doesn’t appear to be tolerating the casings, which were pork that we picked up from the local butcher shop, so I’ve been removing them before feeding him. Either way, he doesn’t care. He loves his hotdogs!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr-NZnmLB7WxSOlV-B9SNlsU-5JF2qf2NeoR92bqIfqpC9ajb3SE2xMQsOFihdfdhnHZWH4ji3BPhYGSb-5g94mv-bm9pItOF6X1kcYLiLh9WMgrj7Zm3fZumMkl5UYjEJU01vr-8ZTksx/s1600/sausage.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr-NZnmLB7WxSOlV-B9SNlsU-5JF2qf2NeoR92bqIfqpC9ajb3SE2xMQsOFihdfdhnHZWH4ji3BPhYGSb-5g94mv-bm9pItOF6X1kcYLiLh9WMgrj7Zm3fZumMkl5UYjEJU01vr-8ZTksx/s320/sausage.JPG" width="240" yda="true" /></a></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com3tag:blogger.com,1999:blog-7732474707546392654.post-53457164632798069932012-01-13T12:20:00.000-08:002012-01-13T12:20:29.507-08:00Ghee and Guilt<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">I should be napping right now.<span style="mso-spacerun: yes;"> </span>Carter was up all night last night with an all too familiar cough. The one that cannot be treated, the one that causes him to gag and throw up, the one caused by a reaction. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">In a moment of weakness, I gave Carter ghee or clarified butter, mixed with a little honey. It was about a teaspoon, and he loved it. When you clarify butter, you removed all the lactose out of it and are left with pure milk fat. A lot of people do well with dairy in this form, even though they can not tolerate it in other ways. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">I was looking for more fats to get into his body, something to help him feel full. The screaming for food and stealing and eating food off the ground, wore me down.<span style="mso-spacerun: yes;"> </span>But we now know that Carter is not ready for dairy and won’t be any time soon. We also know that we need to start a probiotic, and I will order Gut Pro as soon as it’s back in stock.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">But what about the guilt? What do I do with that? I have a very sick little boy with deep circles under his eyes and rough red cheeks and a cough that makes him cry. Someone told me today that guilt isn’t always valid, and that’s true. But it sure is easy! It’s easy to wallow in the guilt and the why me’s, it’s much harder to dig down into yourself and find the strength you need to overcome, to keep fighting, to keep living. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">I have been waiting for this to go away. To get a knock on the door with a certified letter that says “Carter can eat anything now. He’s all better”. I haven’t wanted to acknowledge the truth. And without the conversation I had yesterday, Thanks <a href="http://blog.elliebellyupdates.com/" target="_blank">Nichole</a>, I don’t know when I would have admitted the truth. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">I have a sick little boy, a chronically ill little boy and he’s going to be like this indefinitely. He and I are on a journey together and we are bound to take wrong turns and I need to be ok with that. There is no map for us. No one has journeyed this path yet. We are the pioneers traversing this new land, living on little more than fear, adrenalin and hope. It is no longer about the destination because we don’t know where we will end up or when we will settle down. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">The important thing is that we are moving, even if it’s backwards sometimes, we are still moving. The fear has not paralyzed us.<span style="mso-spacerun: yes;"> </span>The adrenalin and hope push us onward. We are still moving and if we are still moving, then we are still alive.</span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com3tag:blogger.com,1999:blog-7732474707546392654.post-23415458105493941232011-12-29T17:19:00.000-08:002011-12-29T17:19:15.438-08:00Why Am I Doing This??<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Why am I doing this? I’ve asked myself this very question over and over again. There are so many, many reasons not to do this crazy diet called GAPS. The work, the smells, the mess, the fear, the heartache, the sourcing of foods, the lack of mainstream medical support. Did I mention the smells? There are so many reasons to leave GAPS and go back to what we were doing before, when my son could have chips and cereal and candy and muffins and crunchy yummy goodies. Every day, at least 3 times a day, I question the path I have chosen to take, the path of healing. Every day I feel my strength waver. Every tantrum where Carter cries for food. Every time he eats yet another unsafe food left out on the counter or stolen from the garbage. Every time he asks, “What me having for dessert mommy?” Why am I doing this?<o:p></o:p></span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Christmas night I was talking to Carter’s Great Aunt and his Grandma, who see Carter on a regular basis, but who do not read the blog. They haven’t heard me talk about the scariness of watching Carter wither away or very real truth that Carter was dying a little more every day. It’s much easier to type those words than it is to speak them which is why I started this blog in the beginning. I still can barely utter the words, Carter was dying, but I can type them. So they did not know how dire the situation was because I didn’t talk about it. When they asked how he was doing, I always said he was ok.<o:p></o:p></span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">So as we were sitting around the Christmas tree watching Carter play with his brothers and his cousins, his Aunt commented on how good Carter looked and how happily he was playing, that his eyes were clearer and shining, that his face was full and pink. And then his Grandma said something that still brings tears to my eyes. “He’s not lethargic anymore and his eyes aren’t sunken in like they used to be. He looks so much healthier”. <o:p></o:p></span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">They have seen the difference in this little boy. They have seen him transform into a healthy, vibrant toddler. This is why I am doing this, not just to heal him, but to save his life. It was by far, the best Christmas present of the night. <o:p></o:p></span></div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTBT_cLYCRWckIfr6bcGnMjpJ2CUp0cNRs2MuddB-zBIWmW-wUmDxS4ylUd7fgnTO5GhSPv97Lvp4dJaDDQ__FbBJk5Kmf5sUOVzlDb2ffvEWEDZAfeuF1UWpsAR2QCjXl9AA88PAYqRFD/s1600/275.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTBT_cLYCRWckIfr6bcGnMjpJ2CUp0cNRs2MuddB-zBIWmW-wUmDxS4ylUd7fgnTO5GhSPv97Lvp4dJaDDQ__FbBJk5Kmf5sUOVzlDb2ffvEWEDZAfeuF1UWpsAR2QCjXl9AA88PAYqRFD/s320/275.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before GAPS Feburary 23, 2011</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFoLCzx2rN48rjnQGcfsufY-Vzb7acjgH_U7nLdxIx82jSlGJuYbwGg1rUHOGs4LfnomCIp7h10VsvmhXhyAvABCU2nPXTJeobQ1NO80VPJzgMfOTr5XOPbh5ODwzyIGKGzFcB7zOPSdcj/s1600/003.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFoLCzx2rN48rjnQGcfsufY-Vzb7acjgH_U7nLdxIx82jSlGJuYbwGg1rUHOGs4LfnomCIp7h10VsvmhXhyAvABCU2nPXTJeobQ1NO80VPJzgMfOTr5XOPbh5ODwzyIGKGzFcB7zOPSdcj/s320/003.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before GAPS June 18, 2011</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvs3ambTL4LyUDtyXp6yQrc9cr7pduhUBhaiuUDbO659zCm64V85iWwBznjMkpqO_aT0Nb0O-QyvOGpxpZUk4rQfSwDVZvmu3pEly_oWuz6I-kDuVoYDFto6eVVC7rSDey5aUAQQ9wWQnI/s1600/288.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvs3ambTL4LyUDtyXp6yQrc9cr7pduhUBhaiuUDbO659zCm64V85iWwBznjMkpqO_aT0Nb0O-QyvOGpxpZUk4rQfSwDVZvmu3pEly_oWuz6I-kDuVoYDFto6eVVC7rSDey5aUAQQ9wWQnI/s320/288.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before GAPS March 6, 2011<br />
Dark circles and puffy eyes</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3uYnfdwkgTUNoGgJLZAOhX09d4mVOz5lA_C1MC2OcBH3KFjPeoneG9j9Mq4m3eaPUswL74dgqcDzRa-O-5XiHgTCXonAZ9X2hZOTlD7ooK17vH-5s8SeFgbxaJK85oMGpOJfDC_2JyBHd/s1600/car2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3uYnfdwkgTUNoGgJLZAOhX09d4mVOz5lA_C1MC2OcBH3KFjPeoneG9j9Mq4m3eaPUswL74dgqcDzRa-O-5XiHgTCXonAZ9X2hZOTlD7ooK17vH-5s8SeFgbxaJK85oMGpOJfDC_2JyBHd/s320/car2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First Day of GAPS October 28, 2011</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6FxhjWGEvyxSH968Pop5kLKwIhXDNPOusf55HYnKgsTTmRpD0AM3ktKUrYYEIBAdaBHdk1s7X-a-CKEvgeK2yrwlIEmG0_gQ78LpKwbK8TBgM_crubT2uzJjPx_I8t0s44pJdQr614abG/s1600/008.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6FxhjWGEvyxSH968Pop5kLKwIhXDNPOusf55HYnKgsTTmRpD0AM3ktKUrYYEIBAdaBHdk1s7X-a-CKEvgeK2yrwlIEmG0_gQ78LpKwbK8TBgM_crubT2uzJjPx_I8t0s44pJdQr614abG/s320/008.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After GAPS November 25, 2011</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhisQycq0yLqNHAqiJx5JXh3vZtMObe4kLVEyeNEunOzxNqZbanBQtqnOs_eNUxpfUM3ic-4YmWEucSmGvqmBq2ciy-fAMHwXOgjJVlBR19gFhGnbQt89TEOz8MolwPfuacmPoTAENbVjvo/s1600/023.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhisQycq0yLqNHAqiJx5JXh3vZtMObe4kLVEyeNEunOzxNqZbanBQtqnOs_eNUxpfUM3ic-4YmWEucSmGvqmBq2ciy-fAMHwXOgjJVlBR19gFhGnbQt89TEOz8MolwPfuacmPoTAENbVjvo/s320/023.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After GAPS Decmeber 1, 2011<br />
The Dark circles and puffiness are gone!</td></tr>
</tbody></table>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com0tag:blogger.com,1999:blog-7732474707546392654.post-6003510817936571232011-12-14T12:19:00.000-08:002012-02-15T16:14:59.133-08:00The Pumpkin ProjectAfter some experimenting, and some great suggestions, Thanks M!!, I finally have a pumpkin processing system that works! Wait, do you know about my pumpkin craziness? I bought almost 90 pumpkins several weeks ago. Pumpkins are only available fresh until Christmas, at the latest. Seeing that they make up half of Carter's current diet and canned pumpkin while having less nutritional value, is also at risk for soy contamination due to the can linings, we needed pumpkin! <br />
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<tr><td class="tr-caption" style="text-align: center;">A Truck Full Of Organic Sugar Pie Pumpkins</td></tr>
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Step 1: Roast the pumpkins whole! This saved me a lot of time, as I was cutting them first. And if you've ever tried to cut one of these suckers in half, well it's not a fun task! I coated them in coconut oil. Just a tiny amount. I put too much on the first time and it melted of and smoked up the oven. It needs just a light coat.<br />
<em>Edited on Feb.15, 2012: The coconut oil is optional. I have been doing it sucessfully without this step.</em><br />
Line a cookie sheet with foil and place it on one rack to catch any juice that make coat out.. Place the pumpkins on the next rack, directly on the rack, and turn the oven to 350. Roast them for 90 minutes. At least for my oven anyway. Once they've cooled enough to touch them, take them out of the oven. <br />
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<tr><td class="tr-caption" style="text-align: center;">Roasted Pumpkins. So Pretty!</td></tr>
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Once they are cool enough to handle, remove the skin.You can tell they've cooked long enough because the skin separates from the flesh. Makes it super easy to remove the skins!<br />
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Next, slice the pumpkins in half. They cut like melted butter. No fighting them or worrying about losing a finger. The seeds scoop right out. Place them in a bowl and save them for roasted pumpkin seeds or pumpkin seed flour. <br />
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This is the what the pumpkin looks like once the skin and the seeds are removed. The flesh is nice and soft all the way through. </div>
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Next, chop up the pumpkin into smaller pieces to fit in the blender, or use your hands. At this point, you're covered in pumpkin anyway!</div>
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I add a little water and blend away!! Carter won't eat the pumpkin puree if it's the slightest bit chunky or stringy, so I puree it until it's nice and smooth. <br />
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Presto!! 10 bags of pumpkin puree from 6 pumpkins!! Ready to go in the freezer or into Carter's tummy!</div>
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One note about picking your pumpkins, don't skimp! These were organic sugar pie pumpkins from Whole Foods. I originally bought cheaper pumpkins, but they didn't have nearly as much flesh. These have almost double the flesh as the ones I previously bought. Ask your produce department to cut open a pumpkin for you (which should be comical to watch) and check the thickness of the flesh. The thicker the flesh, the better the taste!<br />
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I've got 6 more pumpkins in the oven, and 5 more crates outside, so if you see orange in my hair or on my shirt, my pants or my shoes, don't be surprised!!Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com1tag:blogger.com,1999:blog-7732474707546392654.post-66448238934085426732011-12-07T13:04:00.000-08:002011-12-07T13:04:41.468-08:00Neck and Neck<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">We have 2 new safe foods! Butternut squash and Venison! In my desperation to find another veggie before the pumpkin season was over, we tried butternut. Carter loves it and has declared it pumpkin with honey. So now we have 2 safe veggies, one of which I can get year round. I have even found the butternut in the freezer section. We have received the venison from family and friends and are so fortunate to have meat for carte that is truly wild. We were also given Pheasant and Goose! Two points for Carter!!</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">We tried chicken broth again and his system still isn’t ready for grain fed broths. The chickens were soy and corn free, but still fed grain. Carter ended up with upper respiratory issues that are finally starting to resolve themselves. One point for FPIES!</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">We have almost 300 pounds of pumpkin in our garage waiting to be cut, cleaned, baked and pureed. The produce manager said that he was only able to get them until Christmas last year, so we bough them out. At Carter’s current rate of 2 pumpkins a day, we needed all we could get. I call this one a draw. We were lucky enough to find pumpkin locally, but it’s a lot of work to process that much pumpkin.</span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpimCS3B7ElTs5d9OiTFWRNHo4msX7CIOfhs8YkJSngDou7PaDidI8sMMWC_O5GaJtjKnX7VnUXn36n2FScknIy3O-BgTrXQISZ8_jALfI9sw2EgBoibfrNhy_80HWNtyBfFOif06Lcm90/s1600/IMG_5171.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" mda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpimCS3B7ElTs5d9OiTFWRNHo4msX7CIOfhs8YkJSngDou7PaDidI8sMMWC_O5GaJtjKnX7VnUXn36n2FScknIy3O-BgTrXQISZ8_jALfI9sw2EgBoibfrNhy_80HWNtyBfFOif06Lcm90/s320/IMG_5171.JPG" width="320" /></a></div><div class="MsoNormal" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Our kitchen is still on lockdown. Carter is no longer allowed to be left alone in the kitchen, even for a minute, even if I think it’s safe. He’s gotten very good at moving very fast and very quietly to get to food. He moved the stool, chair and bar stool over to the pantry and chowed down on some yummy cheese filled crumble coffee cake. All this within 5 minutes. I took this picture after we'd cleaned him all up. He is a sneaky one!</span></div><div class="MsoNormal" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; margin: 0in 0in 10pt;"><span style="font-family: Cambria;">His body hasn’t had sugar in over a month and he didn’t know what to do with it. He ended up with a “Sugar Rage”, screaming and tantruming and completely out of control. Once that subsided, the tummy pains, loose diapers and gas started. It took 5 days for that to clear. He has also discovered the garbage can and sneaks food out of it. The last one was peanut butter. It caused enough of a reaction to move peanut butter to the unsafe list, it bordered on IgE. He had respiratory symptoms within the hour that lasted through the night. The horrible, drowning cough . . . It was organic, natural peanut butter so we won’t be trying peanuts anytime soon! Two points for FPIES. Carter – 2, FPIES – 3.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">When Carter is eating what he is supposed to, we’ve noticed a wonderful change; HE TALKS! He talks in full sentences with new words every day and concepts that just blow me away. We asked him the other day what he wanted from Santa. Toys? Books? Movies? No, he wants Santa to come for dinner and sit right by him and he also wants a hug and a kiss from Santa. It truly is a pleasure to hear his little voice and it makes me fight that much harder to make sure our home is safe for him. One point for Carter. Carter – 3, FPIES – 3.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">And that really is where we are right now, Carter and FPIES, neck and neck in the war to keep him healthy. Some battles we win and some we lose, but we keep fighting, determined to heal our little boy!</span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com3tag:blogger.com,1999:blog-7732474707546392654.post-47584340630884002862011-11-17T09:07:00.000-08:002011-11-17T09:07:17.044-08:00Cauliflower Part 2<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Ok, where did I leave off? Oh, yes. Carter was sleeping peacefully . . . until 8:30. He woke up withering in pain. I brought him downstairs and he just laid his head on my chest, drew his knees up into the fetal position and kept pushing on his tummy. There were a couple, “My tummy hurts” and then it happened. A full stomach emptying vomit session. Even at a moment like this, Carter still managed to make us both laugh. “Plu-yuck! It doesn’t taste good!” Followed by, “I feel better” with a big smile on his face.<span style="mso-spacerun: yes;"> </span>How I love this little boy!</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">You may be asking how I knew it was an FPIES reaction and not the start of the flu or a stomach bug. There are two things for Carter that are a dead giveaway. The first one is his mood after he throws up. He is immediately happy. He throws up and then starts jabbering away as if nothing even happened. The second giveaway is the up and down cycling his body does. Sometimes he may only throw up once, but his body cycles between a happy jabbering UP and a lethargic, unresponsive DOWN. It is as if his body is fighting itself, trying to find the balance again.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Carter ended up in the shower with Daddy. I went in to check on them, and Eric said I needed to look at Carter’s belly because something didn’t look right. When Daddy gets concerned, I know there’s something wrong! Carter’s belly was HUGE! It was descended and his belly button had gone from and innie to an outie. I have never seen his tummy so swollen! I later learned that the sweet, fermented smell of the vomit and the swollen stomach are from the candida overgrowth in his system. The very thing that we are trying to kill off using the GAPS diet. The candida literally started to ferment the offending food, producing an enormous amount of gas. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">His stomach stayed that way for almost 3 days and the dumping diarrhea continued for 2. All of this from cauliflower. Less than a quarter of a cup eaten over 3 days. But there is good news!!! If we had trialed cauliflower before the introduction of the GAPS diet, I am sure we would have ended up in the ER and would probably still be there, trying to keep him hydrated. I am amazed at the difference we have seen in only 3 short weeks. The hard work is paying off! </span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com0tag:blogger.com,1999:blog-7732474707546392654.post-49118679789153357232011-11-14T19:51:00.000-08:002011-11-14T19:51:41.615-08:00Bye Bye Carrot. Bye Bye Cauliflower!<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">It’s been 3 weeks since we started Carter’s journey of healing. We have learned a lot about his body, the way he reacts to foods and the overall state he was in before we started GAPS. Before we started, he didn’t know what it felt like to be hungry. I had no idea this was the case until he started to complain about tummy pain right around mealtime. He didn’t know that the pain he was feeling was his body telling him he was hungry. He is learning now to ask for food. He is learning to be hungry. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">It took me a week to make this realization. Carter has NEVER touched food that wasn’t his. He’s NEVER gone into the fridge or freezer or pantry looking for food. He’s NEVER stolen food off of someone else’s plate . . . Until last week. I found him, freezer open, eating a frozen waffle. He stole a cookie off the counter. He opened up Tupperware sitting on the island and ate some food. He took leftover chicken nuggets off his brother’s plate and ate them.<span style="mso-spacerun: yes;"> </span>It was an FPIES disaster! Food he has never even looked twice at, he was now desperate to eat. We had a classic vomiting reaction from all the junk he got his hands on, we were all a mess. But it helped me to realize that he needed to eat much more frequently than I realized. He now eats every 2 hours, which amounts to one pound of beef and 2 small pumpkins a day!</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">We also had 2 fails: Carrot and Cauliflower. Carrot was an uncertain food from many months ago. It used to pass through undigested, but I was hopeful that time had changed that. I was wrong. They were causing low level inflammation as evident from his bright orange and mucousy diapers. So we pulled carrot. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Cauliflower seemed like a safe choice. Low sugar content. And he’s never had it before. 2 big pluses. We introduced it boiled and pureed. He did not want to try it. He took one tiny taste and then refused the rest, going so far as to wipe his hands off immediately if any of the cauliflower got on his fingers. He had his first serving on Saturday. Sunday I mixed it in with his beef and got him to eat some more. Today Carter was obviously hungry and sat down at the table to eat dinner. I gave him the same thing he had for lunch: Beef mixed with cauliflower. He looked at it and screamed. He refused to eat it. It took almost 15 minutes before he finally ate, due to a large addition of salt. Half an hour later, we were greeted with a #3 or poop soup, as a good friend calls it. It happened over an hour ago and the smell is still lingering in the house, a mix of cauliflower and death. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Carter had some obvious tummy pain along with an escalation of cranky’s and clingy’s today, but he’s sleeping peacefully for now. Needless to say, we have pulled cauliflower and he will not be eating it again. Makes me wonder, was the flat out refusal to eat his dinner tonight because he knew the cauliflower was bothering his tummy? </span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com2tag:blogger.com,1999:blog-7732474707546392654.post-85635596065368524622011-11-02T09:21:00.000-07:002011-11-02T09:24:58.670-07:00Today is Day 6!<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">So we have reached Day 6 of the GAPS intro diet. Did I mention that it would get worse before it got better? That’s where we have been for the last four days. Day 3 began with Carter refusing anything, including water. We ended up syringe feeding him some broth and water just to keep him hydrated. He was tired, weak and clingy. By Monday, he hadn’t pooped and it had been 4 days. It is important that his system cleans itself out. That is the biggest way the body expels all the candida (yeast) overgrowth that has taken over his body. So what did that mean? It meant an enema. Clearly not an experience anyone wants to have with a 2 year old, especially when they aren’t feeling well. It was an experience that Eric and I will never forget, but one that I hope Carter forgets quickly. It brought us all to tears. On the plus side, the enema did its job and cleared him out. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">He was crying that his tummy hurt, but still refusing water. Carter normally loves water. Did I also mention that he’s stubborn? Eric suggested we add honey to his water, which is GAPS approved, but not recommended at this point in the diet. We were desperate. Carter needed fluids. I made him a bottle of water and honey. I will never forget the image of Eric sitting in the bottom of the shower rocking our little Car Bean and feeding him a bottle of honey water. It broke me and yet strengthened me all at the same time. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">We continued to give Carter bottles of honey water, but started to change the ratio. He is now taking 25% water and 75% chicken broth with just a tiny bit of honey. He was up a lot last night, but it was ok because he was drinking his “honey” as Carter calls it. 2 sets of jammies, 3 soaked diapers and 4 bottles all in a four hour period. But he is drinking!!</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Carter also went to <a href="http://www.brightenacademypreschool.com/" target="_blank">preschool</a> yesterday. He was tired most of the day and didn’t want to drink anything, but he did eat some boiled carrots! More nutrition in his body! And he loved getting the extra snuggles from his teacher and the preschool director. They have been amazing in the willingness to walk this road with us and with Carter. At every turn, when I expected them to say that we are asking too much of them, they instead pull us closer, help hold us up and <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>continue to persevere on this journey. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">He is tolerating beef broth and meat, chicken broth, pumpkin and now maybe even carrots. <span style="mso-spacerun: yes;"> </span>What will tomorrow hold for Carter? I do not know, but I am certain it WILL be worth it in the end!</span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com2tag:blogger.com,1999:blog-7732474707546392654.post-30778507671361245682011-10-29T20:03:00.000-07:002011-10-29T20:03:47.690-07:00GAPS Day 2<div style="text-align: left;"></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: left;">It has been an exciting 2 days over here! Day 1 of Carter's complete food transformation began well. He drank his broth and asked for more. It went far better than we had hoped. I was afraid he would refuse everything. I pureed some boiled pumpkin into his beef broth and he had pumpkin soup! His favorite meal of the day, and the most bizarre, was his Beef Frosting. Some of the fat from the broth began to cool around the edges of his cup, and the fat's super good stuff for him! I scooped it out with a spatula and he ate it right up! It looked like a kid eating frosting off a spatula!! New Food: Beef Frosting!! The night was uneventful and all in all it was a pretty mellow day. We even got to visit the <a href="http://www.pageriverbottomfarm.com/">farm</a> that is supplying our beef. </div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOtoAGkBkDhywrqoS7_oJsl3u9nryvwqG5IhIs9F8V5wfRyGDEQywtw8b0loDHfjouvzL734sJ7Spe4z8_FAaUb8qTDi7gSxbnVXheApoWZ6l9O-86uZ0jr36OFrBbUCOBuFr2A4gzQGlS/s1600/002.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" ida="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOtoAGkBkDhywrqoS7_oJsl3u9nryvwqG5IhIs9F8V5wfRyGDEQywtw8b0loDHfjouvzL734sJ7Spe4z8_FAaUb8qTDi7gSxbnVXheApoWZ6l9O-86uZ0jr36OFrBbUCOBuFr2A4gzQGlS/s320/002.JPG" width="320" /></a>Happy boy eating his pumpkin soup!</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">Today was certainly harder. He woke up refusing to eat or drink anything. He didn't want broth or soup or water. He wanted cereal and coconut milk, both of which he cannot have anymore. I tried chicken broth, which is more palatable. No go. I tried pumpkin, which he loved yesterday. Wouldn't touch it. It was an uphill battle all morning. I decided to take the boiled liver and some other funky pieces of beef and puree it with some beef broth. I was hoping he would take at least one spoonful to get some nutrition in him. He not only ate the first spoonful, and then a second and a third; he devoured almost half a cup! New food of the day, Beef Pate! I am not sure yet, how this will all sit with him tonight. He is experiencing die off symptoms, as his body begins to rid itself of all the toxins and funk that have kept him from thriving. He's had headaches all day and just wanted to be held. The hardest part was hearing him say, "I'm hungry. I want eat".<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwpguZvObfEI07OsFLB5-Bp5ldlEnBbTYhIgGk2NOCfIY8-8vvqHA5WisrQs7mlmvaTgjXKIygtY2Y95-MpbWF2ayLpuk-EbUWK_WTcYt532fx97B8NxAyV6g3Py6tqHlztMtRCZgWfbQO/s1600/car2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" ida="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwpguZvObfEI07OsFLB5-Bp5ldlEnBbTYhIgGk2NOCfIY8-8vvqHA5WisrQs7mlmvaTgjXKIygtY2Y95-MpbWF2ayLpuk-EbUWK_WTcYt532fx97B8NxAyV6g3Py6tqHlztMtRCZgWfbQO/s320/car2.jpg" width="320" /></a>Yummy beef pate!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">I knew these first days would be tough, but I also know that he's eating real food and as a great friend said today, Short term for a lifetime of eating. I bought several new cups and even a bottle, to find a way to get him to drink and stay hydrated. We even found one with his name on it! And I think my hands will smell of broth for months!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">We had a warm baking soda bath, read a story and had some real giggles! Let's see what tomorrow brings!</div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com0tag:blogger.com,1999:blog-7732474707546392654.post-72774930280905586332011-10-28T14:11:00.000-07:002011-10-28T14:11:23.005-07:00Going GAPS<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">It’s been a while since I last updated. There have been a whirlwind of changes recently and not much time to settle down from it all. There has been very little help from the medical community regarding Carter’s FPIES and that’s for 1 simple reason, there is not enough known about atypical FPIES and how to help children with it. I have done lots of reading and research trying to find a way, not only to feed him, but to heal him. Time and again, I kept coming back to the same answer, <a href="http://www.gapsdiet.com/">GAPS or Gut and Psychology Syndrome Diet</a>. Some amazingly brave FPIES moms have already put their children on the GAPS diet, and have seen some amazing results. One mom had only one safe food for her twins, and in 6 months, they were eating almost 30!! </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">What is GAPS? In short, it is a diet that allows for the body to heal itself using the correct foods in the right combination. It heals the intestinal tract and the leaky gut that makes Carter’s body react to foods. His gut is in a weakened system that allows particles of food which are not yet fully digested, to enter into his blood stream. This causes his body to react to these particles as foreign invaders, similar to a virus. The weaker his system gets, the more foods he reacts to and the less likely he will be to EVER eat normally. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Dr. Natasha Campbell-McBride is the founder of this diet and path to healing. <span style="mso-spacerun: yes;"> </span>There are 6 stages to the introductory portion of this diet before Carter will be able to move onto the Full GAPS Diet. A lot of foods are removed from the diet in order to promote healing. Starchy foods such as potato and corn, all forms of sugar (except honey), grains including rice and all processed foods. This is the majority of Carter’s current diet. So what does that mean? It means it all went in the trash last night. All of it. If it wasn’t a GAPS approved food and it was on Carter’s shelf in the pantry, it went in the trash. What did that leave me with? Nothing! It is hard, but it is the only way we will heal Carter. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">The first stage for Carter involves only the consumption of meat and bone broths and small amounts of boiled pumpkin. Why pumpkin? It is one of Carter’s current safe foods and also one of the foods allowed in the first stage of the diet. I have made beef and lamb broth and currently have a pot of chicken broth simmering on the stove. And the meat has to be soy free in order to make sure Carter doesn’t react to the trace amounts of soy from the feed. So I now have a freezer half full of beef bones just waiting to make the next batch of broth. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">How long will the first stage of the diet take? I am not sure. It all depends on Carter. There are more veggies that we need to introduce as well as the meat itself. For now, we focus on the broth, getting as much into his system as possible, 30 to 40 ounces a day would be wonderful. The more he takes, the faster the healing process. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Now, you probably think this is crazy. Meat?!?! That’s the exact opposite of FPIES friendly. Broth is actually one of the most nutritionally dense and easy to digest forms of nutrition available. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">But doesn’t this mean a lot of time in the kitchen? Making all that broth and nothing processed or store bought? And won’t Carter be upset that all his foods are gone? Won’t he starve? Are you crazy?</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">I have asked myself all of these questions and more. I have turned my back and run from the idea of GAPS for months, looking for another answer, <span style="mso-spacerun: yes;"> </span>only to find myself tripping over it again and again. Carter reacts to his formula, to the 10 formulas we have tried. His accidental ingestion reactions have gotten worse. GAPS is our answer. The incredibly steep learning curve, the sacrifices, the expense, the hours of food preparation will all be worth it. This was not a decision that was made lightly or easily, but we believe it is the right one for our little boy. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Today is Carter’s first GAPS day. He helped us throw away all the yucky food last night, including the Crayola colored pencils (which contain soy and were causing low level reactions). He drank 10 ounces of beef broth for breakfast and another 10 ounces for lunch along with some boiled pumpkin. After he finished his first serving of broth for lunch, he asked for more. He is doing so much better than we anticipated and his brothers are doing a great job of encouraging him. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">As we move through the intro diet, I will post updates of Carter’s progress. I hope you will see the transformation right along with us. I hope you will witness the changes as we go from an under-nourished, cranky, clingy, always hungry little boy to a child who knows what it is to be full and who finally understands and is able to enjoy a day without pain.</span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com4tag:blogger.com,1999:blog-7732474707546392654.post-73348808571029361212011-10-12T21:22:00.001-07:002011-10-12T21:22:24.511-07:00Crazy!<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Crazy! That’s the only word to describe what we did today. Crazy! We took the boys out for dinner after a great afternoon at the zoo. We went to Chick-fil-A for dinner. I looked at the ingredient guide for the waffle fries and it said they were cooked in Canola oil. Carter can have that! Then I looked at the ingredients, no rice starch or milk or any other coatings on the fries. There were a couple chemicals listed, but nothing that jumped out and said BAD!! So we gave him fast food French fries. Fast food French fries. From a fast food restaurant. Like I said, Crazy!</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Carter sat anxiously waiting for the food and chanting French fries! French fries me! He’s eaten them at home, but we haven’t allowed him to eat anything from a restaurant kitchen in quite a while. There are so many unknowns. Cross contamination. Mislabeled foods. Mix ups in the kitchen. It’s a scary world in the food industry kitchen.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">When the food arrived, Carter was in such a hurry to eat them. He cried because we weren’t moving fast enough. We let him eat four or five waffle fries. He had some strawberries and apples from a fruit cup and a juice box of apple juice. His first Dining Out meal. He was just like everyone else for that one meal, that half hour. It was almost like he didn’t have FPIES. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">As fun as it was for him, it’s now ridiculously scary for me. The potential for a reaction is there. The fear is there, but there is also hope. Hope that one day, he will be able to eat just like everyone else. Right now he’s sleeping quietly, but my mommy ears will be working overtime tonight. Let’s hope for a silent night tonight.</span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com0tag:blogger.com,1999:blog-7732474707546392654.post-9020015010649821772011-10-12T21:03:00.001-07:002011-10-12T21:03:40.271-07:00Formula No More<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">How do you get a 2 year old to eat? There are lots of books on the subject and lots of methods. But how do you get an FPIES 2 year old to eat? When food hurts, what incentive do you possibly have to get them to take the nourishment they need? </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">When Carter began to refuse and self limit his formula, we tried everything to get him to drink. What ended up working? Honesty. We were honest with Carter and I told him that if he didn’t drink his formula, we’d have to go to the doctor and he’d have to get pokies (shots). “No. No pokies”. And he drank his formula. Was that the best way to get him to drink it, maybe not. But the all too real fear of a feeding tube scared me enough to try. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">After a huge debacle with our formula order on Ebay, which never arrived, and with Carter being off formula for over 2 weeks, I finally got him to take some unflavored Elecare. I made him a smoothie one evening to calm his hunger. I put 2 scoops, mixed with coconut milk, blueberries and strawberries. It made a 12 ounce smoothie. He drank about 4 to 6 ounces and then peacefully went to sleep. Exactly 3 hours later he was up, crying owwie poop! This was the first time since I don’t know when, that he pooped in his sleep. He was up from 10:30 until 3:30. Reflux, gas, stomach cramping and pain, cold and clammy. The next day he slept a lot, which isn’t surprising considering the lack of sleep.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;"><span style="mso-spacerun: yes;"> </span>So what do I make of it? An FPIES reaction exactly 3 hours after ingesting a small amount of formula. It is a noted food trialing technique to try a food, pull it for 2 weeks and try it again. The 2 week window allows the body time to decide whether the food is truly an invader or not. If the body deems it an invader, the reaction is often worse after the 2 week wait, than it was before. So now we have a confirmed FPIES reaction to formula. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">The following night, Carter had a descended stomach, woke up with a fever and vomited all his food from dinner 6 hours earlier. He was shaking and shivering and coughing. It was the all too familiar reactive cough we’ve had before. It seems that the reaction lessened the strength of his immune system as well. These could have been symptoms of a cold or the second wind of the reaction. It’s hard to tell.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Carter has been off all formula for almost a month now. It has been a long hard road, but we have had some positives. I began to educate myself on the GAPS diet and the benefits of feeding Carter homemade meat and bone broths. So far, I have made him both lamb and beef broth and he’s had them without any FPIES reactions. Yesterday was a big milestone for us. Carter actually picked up his bowl of beef broth and drank it! No fighting or begging or mixing it with other foods. He’s also making some progress in the potty training department! For every setback, there’s a victory. It may only be a small victory, but it deserves all the celebration and fanfare of the biggest victory. </span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com0tag:blogger.com,1999:blog-7732474707546392654.post-83081812812050635412011-09-20T22:32:00.000-07:002011-09-20T22:32:34.669-07:00Insect Repellent. Formula. Preschool.<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Insect repellent. Formula refusal. Preschool and Ms. B</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: Cambria;">Insect Repellent</span></b></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">It’s been a busy month for Carter.<span style="mso-spacerun: yes;"> </span>We went camping the last weekend in August. The weather was perfect but the mosquitoes weren’t. I wasn’t prepared for a bug problem since there weren’t any last time we went, but they were loving Carter. The local store had an all natural insect repellent whose main ingredient was citronella. I weighed the options and figured a reaction through skin would most likely be delayed and wouldn’t hit until we were already home. The alternative was a little boy covered in bug bites. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">We applied repellent, careful to keep any from getting into his mouth. 2 hours later, like clockwork, he started to get cranky and irritable. Then his fever shot up.<span style="mso-spacerun: yes;"> </span>His heart began to race. His breathing was quick and shallow. The reflux kicked in full force and he had several vomiting episodes. These symptoms lasted all night. By 7 am, he wasn’t any better. Carter and I came home, while the rest of the gang finished up the camping trip. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Carter napped from 1:30 to 5 pm and then slept from 7:20 to 8:30 the next morning. Lesson learned: Skin reactions can happen as quickly as ingestion reactions.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: Cambria;">Formula Refusal</span></b></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">We are also battling a formula refusal. Carter usually drinks 24 ounces of formula a day. He went on a 5 day formula strike. By the fifth day, he barely had the energy to walk.<span style="mso-spacerun: yes;"> </span>He finally laid down on the bed, asked to be covered with his blankie, and gave in to the formula consumption, drinking a full 6 ounces. It seemed to be his last resort. He is still not back to regular consumption amounts and we are working on finding a safe multivitamin and entertaining the idea of making our own coconut based formula.<span style="mso-spacerun: yes;"> </span>I am wondering if the soy oil in the formula has reached a build up level that his system can no longer tolerate. More guessing. More detective work. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: Cambria;">Preschool</span></b></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Carter started preschool on August 23. He goes 2 days a week from 11:45 to 5 pm. I pack his lunch and his snack and he has goodies in case there is a special treat in class. He hasn’t cried at all when we drop him off. In fact, he cries when we pick him up! He genuinely loves going to school and it was one of the best decisions we have made for him. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">When I picked him up on Thursday, he started telling me all about Ms. B. I asked him who Ms .B was and he said, “Me teacher”. <span style="mso-spacerun: yes;"> </span>They are taking very good care of him. And we couldn’t be happier. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Ms. B got her first real FPIES experience when one of Carter’s classmates brought cupcakes for everyone.<span style="mso-spacerun: yes;"> </span>Carter got to have one of his safe lollipops, but he kept asking for and pointing to the cupcakes. It was a hard situation for her, having to tell him no over and over and redirect his attention. When she relayed the story, she got tears in her eyes. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Just as Carter affects everyone he meets with his warm smile and contagious laughter, FPIES leaves its own mark. It is not just family that struggle with FPIES and it’s not just family that make an FPIES child’s care their priority.<span style="mso-spacerun: yes;"> </span>We are all in this together.</span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com0tag:blogger.com,1999:blog-7732474707546392654.post-65715157768503280372011-09-06T19:56:00.000-07:002011-09-06T19:56:13.785-07:00Men and Sex. Women and Worry.<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Today’s blog is dedicated to all the men out there: dads, uncles, cousins, grandpas, nephews and friends. I hope this will help shed some light on the thoughts of a mother.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Thanks to the wonders of science, we know that men think about sex every 7 seconds.<span style="mso-spacerun: yes;"> </span>Every 7 seconds! That’s pretty much all the time. Science has also told us that they just can’t help it. There is nothing that can be done to change how often a man thinks about sex.<span style="mso-spacerun: yes;"> </span>This statistic is just an average. I bet if you asked a man, he would say he thinks about sex even more than that, if he’s being honest. Now if we tell a man, “Hey, don’t think about sex. Stop. Think about something else”. What happens? He’ll think about sex even more. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">OK, now that we’ve established that and we are all in agreement, I want you to try something. Let’s take this fact: Men think about sex every 7 seconds, and lets transform it to apply to the one thing moms think about every 7 seconds. Anyone have any guesses? Anyone?<span style="mso-spacerun: yes;"> </span>We are replacing SEX with WORRY.<span style="mso-spacerun: yes;"> </span>So what do we get now?</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Moms worry every 7 seconds. Yep, it’s true. Every 7 seconds we are worrying about something.<span style="mso-spacerun: yes;"> </span>It is a constant dialogue going on in our minds. We cannot shut it off. We cannot make it go away. And if you tell us not to worry, what happens? We worry even more.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">What do we worry about? EVERYTHING. Are the kids happy? Did they get enough hugs before they went to school? Do they like it at school? Are they making friends? Did I turn off the coffee pot? Did I close the garage? Did I lock the door? Is there a doctor’s appointment today or tomorrow? Did I brush my teeth? When was the last time I took a shower? Does the baby have a clean diaper? Did I pack enough formula? Did I make enough for dinner? Did I kiss my husband goodbye this morning? Did I brush me teeth before or after I did that? Do I need to shave? Do my kids know how much I love them? Does my husband know? Is that bump a rash? Does my child’s head hurt? Why does that lady keep stating at my child? Does she think he’s too skinny? Is my little one eating enough? Am I spending enough time with my kids? </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">All those thoughts took place in less than a minute’s time. No, really. We worry that much. <span style="mso-spacerun: yes;"> </span>A woman cannot help but worry, and a mother losses full control of her worrying ability once her child is born. A mom worries about the little things. A mom wakes up at 2 am and worries about whether she packed her child’s toy for show and tell. A moms last thought before she goes to bed is the worry that her kids are either too hot or too cold.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">So men, do me a favor. For the next hour, pay attention to all the times sex crosses your mind. On average, you will have thought about sex over 500 times. Now pretend you’re a mom. Each one of those 500 thoughts about sex for you, was a worry for a mom.<span style="mso-spacerun: yes;"> </span>Just remember this, the next time you start to tell us that we worry too much. We can’t help it anymore than you can. </span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com2tag:blogger.com,1999:blog-7732474707546392654.post-26524619254781706502011-08-31T08:52:00.000-07:002011-08-31T08:52:24.633-07:00Announcing The FPIES FoundationOver two years ago, we began the heartwarming journey of expanding our family from 4 to 5. it was a time of excitement and anticipation. After Carter was born, we were soon pushed onto a different path entirely, the path of chronic illness, the path of FPIES. <br />
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It was a lonely, overwhelming and isolating experience. No one knew much about this diagnosis . Doctors couldn't offer us much help and we continued to watch our littlest boy suffer. Yet, through this maze, we found support and help from parents struggling with the same unexpected path. Together, with this amazing group of FPIES parents, a foundation has launched to make sure that no one is eve alone again in this FPIES journey, to spread awareness to doctors everywhere about the realities of this illness so that no child is ever misdiagnosed again and to give every FPIES child a voice. <br />
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I want to thank you all for the support you have given us throughout the last two years. There are no words to express out gratitude for all you have done. We invite you to visit our website, our foundation, our hope.<br />
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To those of you who have found my blog because you were sitting at your computer searching for any link, any commonality that would help you find some answers, some guidance, some support; this foundation is for you. Thank you for inspiring me and reminding me why this foundation is so important. There is a support forum on the foundation website and I invite you to log on and connect with other families just like you.<br />
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I would like to invite all of you to join the forum. It is not just a place for parents, it is a place for anyone riding the FPIES rollercoaster, and I know you've all experienced the ups and downs right along with us!<br />
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<a href="http://www.thefpiesfoundation.org/">http://www.thefpiesfoundation.org/</a><br />
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The Dyck Family: Eric, Rebecca, Tyler, Caleb and Carter too!Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com0tag:blogger.com,1999:blog-7732474707546392654.post-68760987336194192632011-08-09T10:35:00.001-07:002011-08-09T10:35:37.376-07:00The Last Month<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">We have learned so much in the last month about Carter and his FPIES. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">We knew he could not eat green beans, but we discovered that he cannot even touch them.<span style="mso-spacerun: yes;"> </span>Green bean “juice” on his hands, hand rubbed eye, eye swelled up and had greenish discharge. Benadryl helped clear that up. Leads me to believe he may have an IgE allergy to green beans, but our local allergist does not have a test for green bean. Our only option is a 3 hour drive to Stanford.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Random rash all over his face, chest and back. Still not sure the cause. It could be the yummy Real McCoy’s Shoestring potato chips. I am still waiting for a call back regarding their cross contamination practices. Or it could be eczema. It has gotten much better, for now.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Skin Prick allergy test done for egg showed a reaction to the control, which is salt water. <span style="mso-spacerun: yes;"> </span>The egg may have been a slight positive for an actual IgE allergy, but since the control reacted, the whole test is suspect. The only choice we have is to retest, but that’s more discomfort for Carter. <span style="mso-spacerun: yes;"> </span></span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">Are we developing IgE allergies now? Will this be our next battle to add to this ever changing food war? </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">We are trying to get Carter to take a probiotic on a regular basis. Of course he does not like the flavor and I cannot find a way to make sure he gets all of the probiotic powder required for each dose. I am going to try to make homemade coconut milk yogurt, as long as this container of coconut milk does not have mold growing in it. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Cambria;">On the upside, I now know how to make Pumpkin pudding and Carter loves it! He has another food that he gets excited about and one that I know is safe. For every defeat, there is an uplifting triumph. 3 cheers for Pumpkin Pudding! Hip Hip Hooray!</span></div>Testhttp://www.blogger.com/profile/03434368171508263817noreply@blogger.com0