Sunday, November 20, 2011
I'll Love You Forever
Sometimes I really cant believe how big Jake has gotten. He will always be my sweet baby boy, but I may need a chiropractor. ;-)
10 Month Old
10 month old baby bear Jake and his book!
Jake is growing!!! We are grateful for him. He is climbing, standing, cruising, and bouncing his way around. He is eating PEARS, his one and only safe solid food! He is clapping. He is getting more and more hair. He loves books and stories. He loves feeling the pages of the touch books with little animals. He concentrates really hard and has a thinking face where he sticks his bottom lip out a bit and crinkles his brow and tries to look over those big kissy cheeks of his to see the pages. He is afraid of being away from mom and dad, but he loves people. He has a funny little laugh that sounds more like a hoarse cough and it only comes out once, but he does it the moment he is picked up and walked outside or sees a smiling face. He loves the wind gently on his face and watching the cars go by outside. He loves his daddy. His first word was 'dada'. He is our sweet, sweet boy. He is doing better with his tummy, but we haven't tried new foods. We need to be brave and try new foods, but his happiness has been amazing and I don't want his tummy to hurt. His personality is really getting to be so much fun. He is super determined and if a "road block" is placed between him and any dangerous object in the house, he will scale it and push it and do all he can to climb over it. He will even cry is protest. He squeals with delight and buzzes his lips when he is happy. He just started standing and pushing around a little toy walker. He is so much fun!
Tuesday, November 1, 2011
FPIES Follow-up
Things are looking up Jake!!!
What do you eat?
I tried millet cereal for the first few days and I wasn't such a huge fan. It's supposed to be on the low end of the allergy scale, but yuck. I went to trader joes and bought steel cut oats. I eat them every morning with coconut milk and agave. I eat most fruits and veggies, and lots and lots of pears and avocados. They are pretty allergy friendly and they dont seem to bug little man too much. Dinner usually includes a salad with chicken or turkey.
Why are you doing this?
I'm desperate to help my little man eat. His stomach needed a break.
Well, what's going on with Jake? It is really helping him?
His problems start and begin with food. They are strictly food related. He has really good days when he isn't having a hurt tummy. He has sensitivity and severe reactions to food proteins.
Without jumping the gun, Jake has been sleeping better. Not perfect, but better AND we have started pears again with much success. He gets a tiny lick every day and today...ok I may shed a tear here, I shared a pear with him and he licked it and gnawing at it, and I waited for a reaction and nothing!! My heart rejoiced. There is something really special about sharing food with your baby. Maybe because I want it really bad. Well, I don't want to get my hopes up, but I think there is progress being made. Tomorrow I will cut up some pieces and see what he thinks about that.
What does Jake sleeping better have ANYTHING to do with your eating?
MMMKay, FPIES babies are super sensitive to food proteins. It is a guessing game with each baby. One baby may react to peaches, another may not. There is no list on what works and what doesn't. Eliminating common offending foods causing stomach irritation such as dairy, soy, nuts, etc etc helps to minimize inflammation of the gut. Nursing FPIES babies seem to have a reaction to what their moms eat. Some doctors disagree. They probably dont have FPIES babies or have even heard of it.
Jake had sleep issues from the beginning and wakes up frequently from a dead sleep screeching. Sometimes he will have really good nights and we get so excited, then he will have bad ones. We think it may be related to stomach issues. That is the whole thing I am trying to prove. It's an experiment of sorts.
Are you just overreacting because you are tired?
No. I will sleep when I am dead.
How do you do it?
I have learned that sleep is overrated and I love my under eye concealer. Anyone can do anything they set their mind to even if you are sleep deprived. That and prayer and love from family and friends really helps. ;-) Awwww, shout out to all you wonderful peeps who keep us breathing!
Is Jake just being a cranky baby and you are just a silly first time mom?
Please, dont even go there. He's a wonderful baby who is doing better, and becoming less and less cranky with age and with some nutritional research.
No, really?
I have a somewhat rational brain and I think A LOT, I read A LOT and I really think he is doing better and becoming a normal toddler that I love and laugh with all the time. His normal baby antics have nothing to do with him throwing up two hours after eating food. I can deal with a squirmy baby, a baby who is constipated, a baby who cries. What I worry about his him being able to eat and missing that window of opportunity. Food therapy is very costly and tricky. Babies must learn that different tastes and textures are part of eating. We all had to learn that at one point.
The whole puking and passing out thing is really no fun.
What now?
One step in front of the other. I hope to have him eating at least 3 foods by the time he is one year old. I just ordered millet porridge from Australia. Desperate? Perhaps. Love my baby?Yes.
Friday, October 28, 2011
9 PRECIOUS MONTHS!!!
This lil boy is 9 months old. He is getting to be so much fun! His personality is really shining through, and we've got a very determined, a tab bit stubborn, super darn cute, funny child on our hands. He is more attached to mom than ever before. He has been in this world as long as he was in my tummy, and I'm pretty sure he's still attached. Yup, he thinks that he should be a permanent fixture upon my hip. He doesn't ever want to be put down, day or night, and he loves LOVES his dad. He says dadadada all the day long, and when Andy walks out of the door to go to work Jake quietly whispers dada and crawls to the door. YES he CRAWLS and he's getting mighty speedy. He also pulls himself up on everything, does a little bouncy jigg and pulls anything and everything he can from drawers and shelves. It is amazing the mess a 9 month old is capable of. He sure is our handsome prince and we consider ourselves so lucky to be his mama and dada
Wednesday, October 12, 2011
Huntington Gardens
Andy took me to the most beautiful garden called Huntington Gardens in Pasadena on Saturday. I was gitty as a little girl. My heart literally started singing when we got there. I love gardens, flowers, outdoors, and he knows it. It reminded me a bit of Versailles, France with the statues and the manicured bushes. It was refreshing to walk around and see the Chinese Garden, the Rose Garden, the Japanese Garden, the every garden under the sun garden. We didnt even see a third of the gardens! It was so nice to look up and see trees and more trees and not buildings. Oh la la...c'etait trop magnifique. Jake loved it. He's an outdoor baby. You could spend all day there, but we only spent a few hours. We ate lunch and the smell of the roses was divine. We left with smiles on our faces and a zonked out baby. It was bliss.
Sweet Cheeks
Thursday, October 6, 2011
Stand Strong Movie
Two summers ago, I auditioned for and played a small role in a film called Stand Strong, a Christian based film that is very timely in this economy. It was such an amazing experience!! It is getting released on DVD and sold at some major retailers across the country this week. I haven't even seen it, yikes makes me nervous.
Here's the official Stand Strong website if you'd like to learn more! http://www.standstrongthemovie.com/index.php
So far here are a few of the largest retailers to purchase Stand Strong today.
DESERET BOOK--Arizona, California, Colorado, Idaho, New Mexico, Nevada, Oregon, Utah and Washington. 37 Stores in 9 States. SEAGULL BOOK --Arizona, Utah and Idaho. 25 Stores in 3 States. AMAZON.COM-- Online WALMART.COM-- Online
WALMART SUPER STORES-- 120 stores in all 50 States.
*If it does well at walmart it will also go to Sams Club and Best Buy.
NETFLIX/QWIKSTER -- DVD Only for now.
STANDSTRONGMOVIE.COM-- Online
and several more large christian stores and websites to be announced soon!
Only 5 more days.
FPIES Plan of Action
If I keep blogging about FPIES, it is because it is on my mind (and stomach) constantly. It consumes me. It consumes our family.
I have already noticed Jacob starting to mill through the carpet and picking up little crumbs left behind. One of the tiniest molecules of food eaten could set him into full blown shock, as we learned with rice cereal and it takes weeks for him to recover. Yes, that is all it takes.
I have read and talked with other FPIES mommas who have been warriors in combating this condition. They are amazing and they inspire me. They are strong women of courage. They have battled FPIES mostly on their own, teaching doctors as they teach themselves. They are pioneers. I read their stories and realize that I am NOT crazy. It is insane how their stories mirror our own. It takes a lot to feed a new food to your baby love not knowing if it will be a trip to the ER, but these women have come together and formed the FPIES Foundation just a few weeks ago!!!
I have been reading some literature and becoming as proficient as I can be with such limited research, but I am finding common threads to the success stories and I am forming a PLAN OF ACTION!!! No more of this sitting idly by hoping Jake will pick up a spoon and sit at our Thanksgiving table shoveling in whatever he wants. Nope! Not gonna happen. We've got to work towards that, and someday he will...someday. Even if it is a modified version of all that is good, he will get there in his own way and fashion.
Here is my POA (Plan of Action). It will require me to be diligent and there is NO room for lack of self control. The rewards will far exceed the frustration. If I know I can get sweet Jacob to a baseline of happiness and nights full of sweet dreams, then I am up for the sacrifice.
Here it goes:
I need to do what's called a total elimination diet. I could care less about loosing weight or being skinny. I did not have a baby to look like a super model. Duh! Jake being happy and eating IS my goal. If you think I am obsessive, if you think it sounds like too much, then please, walk in our shoes for a few nights. It is not cake walk and you too would do whatever you could to help your baby's tummy feel better. I am ready.
First: I eliminate all foods and start very basic for 2 weeks following this and slowly add more things: http://www.askdrsears.com/
This also helps his stomach to heal from all the offensive foods eat and prepares him for starting solids AGAIN.
Second: Once he starts sleeping better, after two weeks I will start feeding him something basic, then trialing foods and vitamins. I will also get him on a pro/pre biotic to help strengthen his stomach that does NOT contain soy, wheat, dairy, etc etc. I am only hoping this will goes as planned, but we will see. I do NOT expect perfection, just small successes.
Third: More trials for me and him, possibly get him on Nutramigen AA??? or Neocate? He had tummy cramping and didn't sleep good when we spoon fed it to him. Was it something I ate, or was it Neocate. Who really knows??!! Ahh!
Forth: I am really tired right now and forgot what else I wanted to do.
Fifth: Keep working on the above aforementioned plan all the while not ripping my hair out or loosing it because of lack of this or that.
Everyday: Work on sippy cup. Today he sucked 4 times. Success. It really is in the small things.
There you have it. My POA in writing. I dont expect perfection, just as I mentioned success in the small things. I believe that Jake will get better one day. At times I feel so weak, but I need to take action.
Monday, October 3, 2011
Surviving FPIES One toot at a time!
I laughed, I cried, I connected as I read this mom's blog post about her son with FPIES. She is my inspiration! Read here
Wolverine Baby
Today we took Jake to UCLA to have an upper GI study done in order to rule out any anatomical problems with his tumtum (non-medical term for stomach). I felt like I was watching my son turn into Wolverine, like in the movie where are the doctors place Hugh Jackman on a table and fill his body with some kind of super human metal. They did IN FACT fill Jake's stomach with Barium, to take some xrays.
The whole process was super quick. We got there and all of the sudden doctors and residents (it is UCLA) started putting on heavy led jackets and grabbed our baby (gently) and placed him on the table. Jake held it together like a champ at first. I saw him laying on the table with all the lights on him and strange people with heavy led jackets and crazy glasses and he was looking at them like they did indeed look kinda weird. He was tired and had been fasting for 4 hours and started getting a little ticked off at that point. I kinda thought he might actually start beating some of the medical personnel with his massive cankles (non-medical term for calf and ankle region)or knee-thighs. He was scared and didnt like it, and like most stomach tests with FPIES kiddos, it came back....negative. No visible problems. GREAT! Nice to rule out any twists, webbing, or other things that stop him from keeping food down. Nice to know there is nothing wrong with his anatomy, just food intolerance for right now. We got home and he blasted a massive barium diaper. It was out of control.
If we didnt already have Jake's halloween costume, then he would be Wolverine. However, his Squirt turtle costume from finding Nemo is perfect!
The whole process was super quick. We got there and all of the sudden doctors and residents (it is UCLA) started putting on heavy led jackets and grabbed our baby (gently) and placed him on the table. Jake held it together like a champ at first. I saw him laying on the table with all the lights on him and strange people with heavy led jackets and crazy glasses and he was looking at them like they did indeed look kinda weird. He was tired and had been fasting for 4 hours and started getting a little ticked off at that point. I kinda thought he might actually start beating some of the medical personnel with his massive cankles (non-medical term for calf and ankle region)or knee-thighs. He was scared and didnt like it, and like most stomach tests with FPIES kiddos, it came back....negative. No visible problems. GREAT! Nice to rule out any twists, webbing, or other things that stop him from keeping food down. Nice to know there is nothing wrong with his anatomy, just food intolerance for right now. We got home and he blasted a massive barium diaper. It was out of control.
If we didnt already have Jake's halloween costume, then he would be Wolverine. However, his Squirt turtle costume from finding Nemo is perfect!
Saturday, September 24, 2011
The Happs
Hello world. We are alive. We've been having lots of fun lately so please excuse our disappearance. We'll try to do better. Jake has had lots of doc appts, and my dear mom was in town for love and support, and we had my hilarious and thoughtful friend Caren from SLC come visit. We've been doing well, and the last few nights Jake has been sleeping better, going from waking every hour to waking every 3-4. We are hoping it lasts and are very thankful. The only thing we have been doing different is that I have been eating pretty much the same things every single day and his stomach seems happy with that, and we try and wear him out as much as possible by having dance parties in the living room, blowing bubbles, and encouraging him to bounce and play with his toys.
He has trailed more foods and failed every one. Our biggest concern is wondering how to teach him to eat, and wondering what he will eat one day. He has had a reaction to: pears, apples, rice cereal, and peaches. His reaction to pears and apples was projectile vomiting for several hours and with rice and peaches it was a full blown FPIES reaction where he went into shock, went pale, vomited, etc. We're really not sure what he will be able to eat. His body does not recognize or absorb those foods as nutrients and does everything it can to get rid of them. So strange so frustrating. The allergist called FPIES a beast. I wish I could take it head on, but we have to wait this one out until he is older and grows out of it. Could be in 5 years, could be in 2. We are working on a plan with the allergist to get him trying some hypoallergenic formula and we will slowly do some in clinic food trials.
However, He has been having GREAT days and is smiling more and crying less. It is wonderful!!! He is almost crawling, rolls everywhere, and pulls himself up and bounces on anything he can get his hands on. He broke the 20lb marker and he loves bubbles. When I get brave enough we will venture out with new foods, but until then, I am just fine not having to worry about if he is going to react or not.
Tuesday, September 13, 2011
Spaaaaaah
Grandma is in town. She is a saint and an angel in every single way. I got an outstanding groupon deal for a spa treatment in Beverly Hills. I paid $29 and got a $125 massage/facial. It was HEAVEN. Thank you Grandma!!!
Thursday, September 8, 2011
Living With FPIES
We have our first appointment with an allergist in the morning to discuss Jake's FPIES. If you want to know a little what it is like living with a little one who has this please feel free to read this article. My heart breaks every time.
Page 3 of 3
March 10, 2011
March 10, 2011
Fallon Schultz, a 28-year-old clinical social worker
from Howell, N.J., has known since her son Landon
was two weeks old that something was wrong. He had
horrible eczema and would scream day and night,
projectile vomiting after feeding as if he were allergic
to her own breast milk.
At her pediatrician's advice, Schultz switched to soy
and then to a nutrition formula, but it got much w
orse. Landon had diarrhea filled with blood and
mucus, 10 times a day, and soon he began bleeding
from the worsening eczema under the hair on his
head.
Schultz gave him wheat when he was a toddler and
found him in his crib after a nap, "in a pool of vomit
completely limp." She rushed him off to a
gastroenterologist who said it was only a virus.
"I was hysterical," said his mother. "She kept telling
me I was a new mom and to stop worrying --
everything would be fine and things could be worse.
It was like a smack in the face."
At one point, Landon lost two pounds in two weeks
and had virtually stopped growing. Desperate, after
Schultz found "orange, jelly stuff" -- undigested food,
skin and blood in his diaper, she sought help from
specialists.
Later, she learned that her baby's colon was
hemorrhaging.
It took Schultz 19 months to get a final diagnosis --
food protein induced entercolitis syndrome, or FPIES,
a condition so severe that Landon can only eat five
foods: ripe strawberries, blueberries, avocados,
grapes, raisins and elemental formula.
"These kids are fighting natural food and adapting to
artificial food," said Schultz. "He can have artificial
flavoring, but not Italian ice with natural flavors like
pears."
Schultz drew from every emotional reserve she could
from Howell, N.J., has known since her son Landon
was two weeks old that something was wrong. He had
horrible eczema and would scream day and night,
projectile vomiting after feeding as if he were allergic
to her own breast milk.
At her pediatrician's advice, Schultz switched to soy
and then to a nutrition formula, but it got much w
orse. Landon had diarrhea filled with blood and
mucus, 10 times a day, and soon he began bleeding
from the worsening eczema under the hair on his
head.
Schultz gave him wheat when he was a toddler and
found him in his crib after a nap, "in a pool of vomit
completely limp." She rushed him off to a
gastroenterologist who said it was only a virus.
"I was hysterical," said his mother. "She kept telling
me I was a new mom and to stop worrying --
everything would be fine and things could be worse.
It was like a smack in the face."
At one point, Landon lost two pounds in two weeks
and had virtually stopped growing. Desperate, after
Schultz found "orange, jelly stuff" -- undigested food,
skin and blood in his diaper, she sought help from
specialists.
Later, she learned that her baby's colon was
hemorrhaging.
It took Schultz 19 months to get a final diagnosis --
food protein induced entercolitis syndrome, or FPIES,
a condition so severe that Landon can only eat five
foods: ripe strawberries, blueberries, avocados,
grapes, raisins and elemental formula.
"These kids are fighting natural food and adapting to
artificial food," said Schultz. "He can have artificial
flavoring, but not Italian ice with natural flavors like
pears."
Schultz drew from every emotional reserve she could
find to save her son, who is now 2, logging 482
phone calls to fight with her insurance company,
which refused to pay for his formula and the an initial
$500 visit to Children's Hospital of Philadelphia
(CHOP).
Numerous medical specialists dismissed her
concerns and she even received an anonymous letter
accusing her of having Munchausen syndrome by
proxy -- a mental illness in which a parent fabricates
the sickness of a child in their care.
Landon was eventually diagnosed by doctors at
CHOP.
"They diagnosed him in 10 minutes," said his mother.
"I can't explain the feeling. It was bittersweet --
terrifying, and a relief."
And now the hospital's foundation has agreed to join
Schultz in setting up her new nonprofit, the FPIES
United Family Fund to support education and
advocacy, and to find a cure for the syndrome. She is
hoping to raise an initial $300,000 from corporate
sponsors to raise awareness.
No other organizations exist for FPIES.
"Local doctors don't know about the disease and
phone calls to fight with her insurance company,
which refused to pay for his formula and the an initial
$500 visit to Children's Hospital of Philadelphia
(CHOP).
Numerous medical specialists dismissed her
concerns and she even received an anonymous letter
accusing her of having Munchausen syndrome by
proxy -- a mental illness in which a parent fabricates
the sickness of a child in their care.
Landon was eventually diagnosed by doctors at
CHOP.
"They diagnosed him in 10 minutes," said his mother.
"I can't explain the feeling. It was bittersweet --
terrifying, and a relief."
And now the hospital's foundation has agreed to join
Schultz in setting up her new nonprofit, the FPIES
United Family Fund to support education and
advocacy, and to find a cure for the syndrome. She is
hoping to raise an initial $300,000 from corporate
sponsors to raise awareness.
No other organizations exist for FPIES.
"Local doctors don't know about the disease and
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Toddler Landon Schultz Eats Only 5 Foods or Goes Into Shock
because they don't pick it up. [Landon] has permanent
damage and is not going to get better," said Schultz.
"If you don't have something that is cookie-cutter,
they think you are crazy. I am trying to turn
something that has been a nightmare to help
someone else's child. It's been a long two years."
damage and is not going to get better," said Schultz.
"If you don't have something that is cookie-cutter,
they think you are crazy. I am trying to turn
something that has been a nightmare to help
someone else's child. It's been a long two years."
No Diagnostic Code Exists for
FPIES
FPIES
Doctors don't even have an ICD-9 code to diagnose
FPIES, according to the United Family Fund, which is
pushing for that medical diagnostic tool.
"Our lives have been taken over by FPIES, and I am
just trying to do everything I can as a mother to help
him and other children affected by this cruel disease,"
she said. "I want to do something big. I want these
kids to be better. It's not good enough for my son
and or the kids going through this."
Landon cannot eat 27 fruits, vegetables, milk and soy
products, grains and meats. If he does, he is in
excruciating pain. Then, for days afterwards, his
body fights the proteins in the food, damaging his
gut and causing such dangerous vomiting and
diarrhea that he runs the risk of going into a septic-
like shock.
Experts have no idea how many children suffer from
FPIES. Most will outgrow it in four or five years, but
Landon's case is so severe, no one can predict his
prognosis, according to Schultz.
"It's unclear how big the population is -- we don't
know," said Dr. Jonathan Spergel, chief of CHOP's
allergy division, who estimates perhaps 1 in 100,000
children have the syndrome.
"My guess is we are better trained at recognizing it,
and therefore the disease is rising," Spergel said.
Processed foods, fewer probiotics, preservatives and
the use of antibiotics may all play a role, he said, but
research in this type of food allergy -- which may
behave like an autoimmune disease -- is still in its
infancy.
"FPIES is not like the classic food allergies where you
eat and it occurs seconds later, like with a peanut
allergy," he said. "The reaction is delayed. That's what
makes it hard to diagnose."
Doctors can test fairly accurately for food allergies
with a skin and blood test, but most cases of FPIES
turn up negative.
FPIES, according to the United Family Fund, which is
pushing for that medical diagnostic tool.
"Our lives have been taken over by FPIES, and I am
just trying to do everything I can as a mother to help
him and other children affected by this cruel disease,"
she said. "I want to do something big. I want these
kids to be better. It's not good enough for my son
and or the kids going through this."
Landon cannot eat 27 fruits, vegetables, milk and soy
products, grains and meats. If he does, he is in
excruciating pain. Then, for days afterwards, his
body fights the proteins in the food, damaging his
gut and causing such dangerous vomiting and
diarrhea that he runs the risk of going into a septic-
like shock.
Experts have no idea how many children suffer from
FPIES. Most will outgrow it in four or five years, but
Landon's case is so severe, no one can predict his
prognosis, according to Schultz.
"It's unclear how big the population is -- we don't
know," said Dr. Jonathan Spergel, chief of CHOP's
allergy division, who estimates perhaps 1 in 100,000
children have the syndrome.
"My guess is we are better trained at recognizing it,
and therefore the disease is rising," Spergel said.
Processed foods, fewer probiotics, preservatives and
the use of antibiotics may all play a role, he said, but
research in this type of food allergy -- which may
behave like an autoimmune disease -- is still in its
infancy.
"FPIES is not like the classic food allergies where you
eat and it occurs seconds later, like with a peanut
allergy," he said. "The reaction is delayed. That's what
makes it hard to diagnose."
Doctors can test fairly accurately for food allergies
with a skin and blood test, but most cases of FPIES
turn up negative.
"The gold standard is to give a child food and watch
for their reaction," he said. "But it's not pleasant to see
them get sick, so we work primarily on history, and
families describe if they ate this food and had a
reaction. We tell them to try this one food for a week
and then the next one."
When Schultz tried to introduce sweet potatoes into
Landon's diet last September, he had violent reaction
that landed back at CHOP for five days.
for their reaction," he said. "But it's not pleasant to see
them get sick, so we work primarily on history, and
families describe if they ate this food and had a
reaction. We tell them to try this one food for a week
and then the next one."
When Schultz tried to introduce sweet potatoes into
Landon's diet last September, he had violent reaction
that landed back at CHOP for five days.
Even Gastric Tubes Fail Kids
Other families have struggled to keep their children
nourished and healthy.
Neveya O'Donnell was diagnosed with FPIES when she
was 8 months old, after she began bottle feeding.
Now, at 17 months old, she is less than 28 inches
long and weighs 16 pounds.
She's been fed with nasal and gastric tubes that "never
stayed in," according to her mother Renee O'Donnell,
an optician from Eau Claire, Wis.
"Unfortunately this has not helped her stay on the
growth charts," said O'Donnell, 28. "She continues to
fall farther and farther below the line."
Right now, Neveya can only take Neocate JR, which
costs $65 a can. Her mother also fought to get
insurance to pay.
"We had an in-hospital food trial for lamb and
bananas at the beginning of December -- lamb
caused skin problems," she said. "But when we did the
bananas she went into shock within four hours. This
is a typical reaction to all the foods we have tried."
nourished and healthy.
Neveya O'Donnell was diagnosed with FPIES when she
was 8 months old, after she began bottle feeding.
Now, at 17 months old, she is less than 28 inches
long and weighs 16 pounds.
She's been fed with nasal and gastric tubes that "never
stayed in," according to her mother Renee O'Donnell,
an optician from Eau Claire, Wis.
"Unfortunately this has not helped her stay on the
growth charts," said O'Donnell, 28. "She continues to
fall farther and farther below the line."
Right now, Neveya can only take Neocate JR, which
costs $65 a can. Her mother also fought to get
insurance to pay.
"We had an in-hospital food trial for lamb and
bananas at the beginning of December -- lamb
caused skin problems," she said. "But when we did the
bananas she went into shock within four hours. This
is a typical reaction to all the foods we have tried."
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Responding to families like the O'Donnells, who help
with FPIES Family United Fund, has inspired Schultz.
"I turned from mourning all the time, to feeling
empowered," she said. "I feel like I am helping others,
giving a place for the families in our community."
Life hasn't been easy for her family. The couple had a
car accident when Schultz was 9 months pregnant
and her husband Chris had spinal surgery, and is
now unemployed. They moved out of their house and
are renting it to decrease their expenses, because one
parent had to stay home with Landon.
Now, Landon also is participating in a study on
cytokines, TNF and response to gut flora, which is
being run by Dr. Harumi Jyonouchi, an associate
professor at University of Medicine and Dentistry of
New Jersey. She is also director of the university's
Pediatric Center for Rare and Complex Disease.
Schulz said they have determined that her son likely
would not overcome his severe reaction to foods. But
CHOP's Spergel says he is "more optimistic."
"The majority of these kids we see outgrow it," he
said. "Landon may not be able to eat everything, and
he'll always need some elemental formula to get his
balanced calories, but he'll be able to eat more than
four foods."
Spergel applauds Schultz for starting her nonprofit
and has pledged to support her.
"She has very global vision to everything -- which is
fabulous," he said. "She is high energy, which is
good. I say, 'Be careful, don't over-stretch yourself.'
But I am impressed with how much she has done and
how fast she's done it."
To which Schultz characteristically responds, "I have
enough room to stretch right now. We have such an
incredible community and I have been so touched by
strangers. I don't even know them and they provide
support. That's one of the beautiful things. I've been
able to delegate and not one person said, 'I can't do
it.'"
To provide corporate sponsorship or donations to
begin international research go to the FPIES United
Family Fund..
with FPIES Family United Fund, has inspired Schultz.
"I turned from mourning all the time, to feeling
empowered," she said. "I feel like I am helping others,
giving a place for the families in our community."
Life hasn't been easy for her family. The couple had a
car accident when Schultz was 9 months pregnant
and her husband Chris had spinal surgery, and is
now unemployed. They moved out of their house and
are renting it to decrease their expenses, because one
parent had to stay home with Landon.
Now, Landon also is participating in a study on
cytokines, TNF and response to gut flora, which is
being run by Dr. Harumi Jyonouchi, an associate
professor at University of Medicine and Dentistry of
New Jersey. She is also director of the university's
Pediatric Center for Rare and Complex Disease.
Schulz said they have determined that her son likely
would not overcome his severe reaction to foods. But
CHOP's Spergel says he is "more optimistic."
"The majority of these kids we see outgrow it," he
said. "Landon may not be able to eat everything, and
he'll always need some elemental formula to get his
balanced calories, but he'll be able to eat more than
four foods."
Spergel applauds Schultz for starting her nonprofit
and has pledged to support her.
"She has very global vision to everything -- which is
fabulous," he said. "She is high energy, which is
good. I say, 'Be careful, don't over-stretch yourself.'
But I am impressed with how much she has done and
how fast she's done it."
To which Schultz characteristically responds, "I have
enough room to stretch right now. We have such an
incredible community and I have been so touched by
strangers. I don't even know them and they provide
support. That's one of the beautiful things. I've been
able to delegate and not one person said, 'I can't do
it.'"
To provide corporate sponsorship or donations to
begin international research go to the FPIES United
Family Fund..
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Tuesday, September 6, 2011
Labor Day
This weekend was a lot of fun (minus our sweet boy having some tummy issues all night and waking every hour screaming-nothing new). We managed to do a TON of really fun things!
Friday I packed up the car and picked Andy up at 3pm and we started heading for Vegas when his mom told us a forest fire en route had shut down parts the freeway. We turned around and headed home. We didnt want to get stuck on the freeway with only one lane open and our baby. So...we rented the movie The Adjustment Bureau and put bebe to bed. We woke super early on Saturday and hit the road, stopping in Barstow for breakfast. Jake stretched his wee little legs and bounced around while we ate some pancakes and off we went making record time!
We were able to swim in our in-laws new pool and get a tan. I got my first tan of the summer, now that summers over!!!
Jake is a water boy, he absolutely LOVED the water! He splashed and laughed for a long time. Andy went to a pool store and bought him an inflatable chair. It was worth every penny. We spent that evening playing with family and catching up eating some seriously yummy grub and watching football. Auntie Lynda and Uncle Ryan drove all the way from SLC to see Jake Bake.
We were able to go to church on Sunday with our friends Brittany and Braden Anderson, who we met out here in LA when we first moved out. They ended up moving to Vegas just a few blocks from Andy's parents. It was so good to see them! Brittany is one of the most talented gorgeous gals around with a heart of gold, and she has the sweetest new little babe. She can sew or craft anything, and I mean ANYTHING. She taught me how to make a quilt before Jake arrived. I love catching up with friends.
We went to the M&M and Pepsi factories on the Strip. I dont know why they call them factories because I was fully expecting to see how M&Ms were made, but it was just a 4 story gift shop. Disappointing, but we still had a great time. We taste tested 14 different sodas from around the world. My least favorite was one from Italy and my all time favorite was green apple soda from Japan. Yum.
We went swimming some more and had a wonderful visit. We left on Monday and that evening Andy and I went to Tido's Tacos not too far from our house. THE BEST TACOS EVER! Wow, I cant stop thinking about how good they were. Savory and just plain good. It was awesome to have Andy home for 3 days and to spend time just hanging out with family.
Friday, September 2, 2011
Montana 2011-Part II
Our last couple days we were invited to the Olsen Family Ranch (two of the 153 Jackson Residents live there). We had an awesome homestead dinner and they called in their horses from the fields and Jake rode his first horse. Unfortunately, those picture are on my sister in law's camera, but I will post them when I am able to get them.
Jackson, MT also has some hot springs where you can swim and soak in the spectacular natural hot springs mineral pool. It is one of my favorite things to do, and it is never crowded.
We also spent the last few days fishing and my brother caught a record sized Brooke Trout. We played games and puzzled, relaxed, rode 4 wheelers, and went for another hike. We even saw our first bear!!!
It was pure heaven. I am counting down the days until next year.
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