Happy New Year!

Where did 2013 go? We had a great year here. Thankfully, it was a safe year. It always feel good to get rid of those expired epi pens, knowing that they weren't used. I hope that you had a safe year too. I look forward to 2014 with hope. I hope that it is another safe year for all of us and I hope that a cure is found soon.
Thank you for reading! Cheers to 2014!

How did it go?

How have your holidays been so far? Safe,  I hope. All is going well here. We are into the lazy part of vacation. Last week was busy and wonderful with friends and family. I am really enjoying this lazy time. We are doing the usual for New Years, nothing. Which is fine with me. Do you have any festive plans?
Thank you for reading and I wish you all a safe, happy, and healthy New Year!

Two weeks.....

The children are off for the next two weeks. They haven't started fighting yet, that's encouraging. Two weeks of not having to worry about her at school. No worrying every time the phone rings. Two weeks where my brain doesn't have to be in over drive. I needed the break.
This time of year often brings reflection. I am so blessed with friends and family that do everything they can to make us feel safe and included. I hear horror stories from others about how their friends and families do nothing to help and at times, they make it worse. I can't even begin to imagine......
I hope that you all have a safe, happy, and healthy holiday season.

Share it

I fully believe that the only way that lives will be saved, before a cure is found, is education. The only way to educate is to share information.

Share this, another child gone, and her name was Emma....
http://www.independent.ie/irish-news/mothers-agony-as-teenage-girl-dies-from-peanut-allergy-on-city-street-29854519.html

and Abbie
http://www.legacy.com/obituaries/bostonglobe/obituary.aspx?n=abbie-benford&pid=168639786&fhid=25327

This should never happen...my thoughts are with the families.

The ice cream party

My daughter had an ice cream party in her class yesterday. I was unable to be there but my husband was there the whole time. It went great! Just about everything was safe and what wasn't was supplemented from home. A goodie bag was sent home. The room mom sent me an email later. She had taken pictures of all of the ingredients from every bag of candy and sent them to me! Everything was safe. I was stunned by her kindness and willingness to help.
Two more days and we are on winter break. We are home for the two weeks with very little to do. Yes, of course, there will be baking!
How are you spending your break? Have there been endless parties in the classroom? How do you handle it.

Playing with the Auvi-Q trainer

My little one went into the junk drawer in the kitchen, what a mess! She found the Auvi-Q trainer (I'm not paid by them in anyway). She decided that she wanted to practice. How could I say no to that. She spent about 30 minutes using me. She practiced on me and then I had to do it on her. Every time I used it on her she said, in a very dramatic voice, "Oh Mommy, you saved my life". Cute, but slightly depressing. At first she had a hard time getting the trainer out of the case and she had a hard time getting the red tab out but, after a while she was a pro. She was very proud of herself! It was a good reminder that every so often she should practice.
We had to renew her prescription for her epi pens so we practiced using the old ones by injecting a clementine. Poor clementine never saw it coming....
Do your kids ever practice with trainers? What do you do with your expired epi pens?

Mixed emotions

This time of year is crazy. Holidays, shopping, cooking, managing life with food allergies and so on. I often feel bad for my daughter because her life is not easy and it's  not going to be easy. Well, life is never easy but it's even more difficult because of the food allergies. Then there is the guilt that I live with. I know, I did nothing to cause the allergies. I'm still a mom, I still have guilt. Can't help it. This morning I went to Target to do some shopping, grocery and holiday. For the second year in a row I ended up in Target on a special day. There were many police officers there helping children and families do some holiday shopping. Santa and Mrs. Claus were there too. There was a T.V reporter there also. The parking lot was packed with police cars. I started walking up and down the aisles gathering my things. I passed Santa. He wished me a Merry Christmas and then stopped to talk to someone behind me. There was a mom and child. Santa gave the little boy a candy cane. The little boy seemed to be a little scared of Santa but he took the candy cane and enjoyed it. Of course, this was adorable. Then I thought, glad the kids aren't with me because I would have to say no thank you to the candy cane. That would have been awesome....... :(
I moved on and heard an adorable conversation between a child and Santa. He asked Santa why he was there because we all know Santa lives at the North Pole. Santa replied that he came down to visit him and the other children etc. It was very sweet and brought tears to my eyes.
My family is so fortunate. We have a roof over our heads and food to eat. I can buy my children presents for the holidays. I have so many good things in my life. More importantly I have so, so many good people in my life.

Shimmer

Another child is gone. Lost to life threatening food allergies. I can't believe it. I feel like I am beating my head against a wall some days. When will this be taken seriously? Our children (and adults) need to be protected. There needs to be life saving epinephrine everywhere. There needs to be better labeling laws. Schools need to have uniform laws on how to handle life threatening food allergies.
Everyone needs to know that food allergies can be, and are, life threatening!
https://fundrazr.com/campaigns/eeai9

Tis the season with food allergies

Are you as super busy as me? This time of year is crazy. Going back to school after Thanksgiving was tough. We had a nice break and we didn't want it to end. Now, about 3 weeks until our next break. During those 3 weeks there is shopping, cooking, and so on....
Yes, there will be parties also. How do you handle them all? Do you bring food with you? Do you not attend or do you have them at your house?
It's so hard to keep up during this time of year. Do you give  yourself any time off to relax? Is that even possible?

Thanksgivukkah was great!

We had such a great day yesterday filled with family, friends, and safe food! Phew!
How was your day? I hope it was wonderful and safe.
Now,we will enjoy the rest of Hanukkah while getting ready for Christmas. Christmas is at our house so that will be easy and safe. Nothing easier than staying home.

Two holidays in one!

Next week brings a strange mash up. Two holidays in one. Thanksgiving and Hanukkah collide this year bringing us a new holiday, Thanksgivukkah! I have wasted a lot of time recently looking up Thanksgivukkah ideas on pinterest. So, instead of a cornucopia I have made a geltucopia! The possibilities are endless.
Holidays can be stressful when dealing with food allergies. How do you handle it? I am so lucky to have supportive family, Thanksgivukkah will not be stressful for me and for that I am so very thankful.

Stock epi law and a surprise!

Great news for everyone with a child in school! The stock epi bill became a law yesterday. Even better, there is video of the President signing the law!
http://www.cbsnews.com/8301-204_162-57612201/food-allergy-epinephrine-bill-reaches-obamas-desk/

I was filled with joy when I heard the news. Then I watched the video in stunned silence. The President announced that his daughter, Malia, has a peanut allergy! My jaw was on the floor. He said that she does not have asthma but she has a peanut allergy. What????? I did a quick google search for Malia and peanut allergy. Nothing came up. I found articles that briefly discussed that she has asthma. I found articles about her allergies and how they had to find a hypoallergenic dog (there's no such thing but that's a topic for another day). I found nothing about Malia and a peanut allergy.
I thought about how, maybe, they actually wanted to keep this under wraps. There are crazy people out there and she is the Presidents daughter......first and foremost they need to keep her safe. So, I am actually surprised that he said something. I hope now, that the information is out there, that they would be proactive about raising awareness. Who is more well known than the first family? Wouldn't it be amazing if the First Lady added something about food allergies to her Let's Move and healthy eating campaign? I, of course, feel horrible that Malia has a food allergy. However, this is a huge teaching moment. My children were wide eyed to hear that Malia has a food allergy also.
Food allergies in the White House......

Victory!

Today is a day to rejoice. The President is scheduled to sign the national stock epi bill today! So many people have worked so hard to make this happen. Unfortunately many people were taken too soon, including countless children. I hope this means that their deaths were not in vain. I hope that their families can find some comfort in that. This bill will literally save lives. I feel that my non allergic child will be protected if she should have a first time reaction in school.
I hope that the President signs this bill swiftly. I hope that the signing somehow makes it on the news. Even just a little media coverage raises such awareness.
It's a good day.....
http://abcnews.go.com/Health/wireStory/food-allergy-awareness-heads-presidents-desk-20872212

Yummy!

One of the best parts of participating in the walk are the yummy samples that we get to try. So many companies, so many goodies. I love finding new snacks that we can safely enjoy. I'm not paid in any way by any of the companies. I finally got to try Plentils by Enjoy Life. YUM! So many great flavors. I also got to finally try Skeeter Snacks. All different flavors of cookies. I can't even pick a favorite.
Have you recently discovered a new, safe, snack?

Halloween, a party, and a walk

Here's the wrap up for this week, it's been a busy one.

Halloween-It went well. The kids had tons of fun going trick or treating with a few friends. I had two epi pens with us, safe candy, and charged cell phone. After they went to bed I went through the candy. There must have been a sale on Snickers because we had a ton of those. Anyway, I separate it into two piles. Safe and not safe. It's another year where the safe pile was bigger! We were actually able to keep a lot. I think that better labeling and more awareness is key to this success. Something amazing happened at one of the houses that we stopped at. The woman that answered the door asked if any of the kids had allergies! We do not know the people that live at this house. My little one said yes and the woman helped her to find something safe! Incredible!

The party-The day after Halloween my little one had a party at school. I knew about it and plans were put in place in advance. I was at home as it was the day before the walk. As the kids get older parents are not invited in as much. We can attend the parties but if we are going to be the only parents there then I don't want to attend. I want her to have as normal an experience as possible. Anyway, the phone rang and there was the school on the phone. I don't know why I thought that we would actually make it through a whole year without a phone call from the school. It was the teacher. She was asking me if the donut holes where safe and she started reading me the ingredients. I nearly fainted. I reminded her that she can't eat anything unless we approve it prior. I reminded her that she was going to defrost a cupcake. She admitted that she forgot. Luckily I also stock her cabinet with safe cookies and chips. Yes, I am thrilled that she called to go over ingredients. I'm not thrilled that she forgot to defrost a cupcake. Just when I thought it was getting easier.....

The walk-It was yesterday and I'm just starting to recover. I was truly exhausted last night. It was the most amazing day! The weather was incredible. Sunny and cool. The day before it rained like crazy so I was truly stressed about the mud factor but it wasn't too bad at all. We had amazing entertainment, great speakers, great attendance, it was perfect. We are very close to our fundraising goal, I think we might make it by the end of the year. It's always a great day, I love spending time with those that get it. I was humbled and reduced to tears by many kind words. I hope everyone enjoyed it as much as I did.

Good news is awesome, great news is even better!

Lots to report today and all of it is good!

First off the CDC has come out with voluntary guidelines for schools that are dealing with food allergies, which is really every school I am sure.
http://www.cdc.gov/healthyyouth/foodallergies/

More good news!

The stock epi bill has moved to the Senate! I hope that it passes quickly, makes it to the President's desk, and is signed into law! The following is an email that went out from FARE,food allergy research and education.



Federal "Stock" Epinephrine Bill Moves in Senate

Dear FARE Supporter, 

It is rare that we send you two food allergy announcements in one day, but today has been a truly remarkable one for the food allergy community. 

This morning, we announced the release of the CDC’s new national guidelines for food allergy management in schools.

We are also pleased to inform you that federal legislation to encourage schools to maintain a supply of “stock” epinephrine auto-injectors cleared yet another major hurdle! The School Access to Emergency Epinephrine Act was approved by the Senate Health, Education, Labor & Pensions (HELP) Committee and will now move to the full Senate for a vote. Sponsored by Senators Dick Durbin (D-IL) and Mark Kirk (R-IL), the bill provides an incentive to encourage states to require “stock” epinephrine auto-injectors in their schools -- meaning epinephrine that is not prescribed to a specific student but can be used for any student or staff member in an anaphylactic emergency. Four states have already passed laws ensuring that epinephrine is available in all schools, and many others allow schools to stock epinephrine, but do not require it.

Food Allergy Research & Education (FARE) has been working tirelessly toward the passage of this critical legislation for the last two years. The food allergy community and FARE have overwhelmingly supported this and similar state legislation across the country. Since the introduction of the federal bill on May 22 in the House of Representatives by Reps. Phil Roe (R-TN) and Steny Hoyer (D-MD), FARE has been working closely with the bill sponsors, meeting with legislators on Capitol Hill to build support, soliciting endorsements from other organizations and issuing action alerts to advocates across the country. These efforts helped assure passage in the House on July 30 and generated 37 cosponsors in the Senate in less than two months. Last year’s federal stock epinephrine legislation did not move out of committee, so we are strongly encouraged by the swift movement of this year’s bill.

The School Access to Emergency Epinephrine Act is endorsed by FARE, the American Academy of Allergy, Asthma and Immunology, the American Academy of Emergency Medicine, the National Association of Elementary School Principals and the Allergy & Asthma Network Mothers of Asthmatics. Since the Senate legislation is identical to that passed by the House, no reconciliation is required. FARE is encouraging the Senate to quickly pass the legislation and forward for President Obama’s signature.

Welcome to crazy land

In addition to all of the usual crazy around here it's Halloween week. In addition to the Halloween crazy it's walk week also. I am the walk chair for the local food allergy walk which will take place on Saturday. This makes for a busy time.....
All is good here, not much to report actually. She does have a class party on Friday. Yes, they are serving stuff that she can't have. This is why I stock the freezer and cabinets with safe food. Food will be out of the classroom one day, right?
How are things with all of you? Ready for Halloween?

Halloween candy

Do you have a hard time finding Halloween candy that is safe for your family? We are allergic to tree nuts so candy can be tricky. I try and pick candy to handout that is safe for us and hopefully safe for a good part of the allergic community. I bought dum dums today. The bag has, in huge letters on it, "free of most major allergens". How great! I also got Sixlets. They are kind of like M&M's. They are made in a nut free facility. They were also on sale today, which was very exciting. What are you passing out this year.
*I am not paid by any candy company. I'm just sharing what we do here.
*Please, always ready every label, every time.

Remember him

Please keep 14 year old Giovanni Cipriano and his family in your thoughts and prayers. He passed after spending two weeks in a coma. He accidentally ate peanuts, he was allergic.
I do not know the circumstances that surround his death but it is yet another tragic reminder of what everyone should know, food allergies can be fatal.
So very, very sad....

Here we go again, the assault on the food allergic.

I feel like it has been a while since I had to post something that upset me. Well, that's good but it's over today.
Two items have me angry today.
Here's the first-
http://www.debbieschlussel.com/66513/absurd-big-ten-football-game-to-be-peanut-free-in-pc-deference-to-peanut-allergies/

Debbie Schlussel is the author of this article. She writes about an upcoming college football game between Northwestern and Minnesota. The game will be peanut free! Such great news. Well, not great news to Debbie. She uses the words Jihad and Nazi in her article. She even compares the food allergic to terrorists. Just when you think that you have heard it all......

Last night ABC ran an episode of Super Fun Night. I admit that I have not watched it and I have never heard of the show. I can tell by the comments on their Facebook page that it was an episode that made fun of food allergies. Can someone explain to me why so many shows make fun of food allergies? How are food allergies funny?

https://www.facebook.com/ABCNetwork

If this doesn't motivate you.....

Here is a great blog post, I just had to share.

Do not let the death of this child, and the other children that have passed,  be in vain. Get out there, fight for our kids, fight for your kids, fight for the next generation of families that will have to deal with food allergies.
Be a trailblazer....
http://www.foodallergymama.com/2013/10/13/tears-in-heaven/

Best status update ever

Kyle Dine is an amazing singer who sings about food allergies. I am a fan of his on Facebook. Here is his status update-

I wish people would stop saying "allergies didn't exist when I was a kid" and just accept that they do now. Allergies are not lessening, so can people please stop questioning?

Enough said......


I'm over 4000 views. Thank you to all that read and share, it is appreciated.

Halloween and food allergies

I love fall, it's my favorite season. Fall also brings Halloween. Halloween, if I am going to be honest, is not my favorite holiday. I'm not the "dress in costume" kinda girl. Never have been, I don't know why. Anyway, since food allergies hit our family, Halloween has taken a whole new turn. My kids, of course, love Halloween. They love getting dressed up. They also love the candy. Well, the candy that they can keep. Tree nuts keep some candy out of our house. After the kids go to bed I sort all of the candy out. Anything with tree nuts is gone, so are the "may contain" and the "made in a facility". Anything without a label that I think is safe stays. It goes into the pumpkin in our pantry that says not safe. This pumpkin is for my older daughter and off limits to the younger one. Anything that is safe goes into the safe pumpkin. We have been doing this for four years and it has always worked fine. I remember when we first had to celebrate Halloween in this manner. Lots of candy was sent out of our house. Over the years I have noticed that we can keep more and more of it. Many houses are passing out candy that is safe for us. Many companies are making candy that is made in a nut free facility. It certainly makes our life easier. I used to order very expensive safe candy online. I'm not doing it this year, last year I did and I didn't need to. 

How do you handle Halloween in your house? Do you hate Halloween as much as I do?

The kindness of strangers

This is an amazing story, please read and feel free to share. I can feel this moms panic and pain during this horrible situation. I always feel so blessed that I have an amazing support system around us but to hear that a total stranger stopped to help, that is phenomenal!
I love a story with a happy ending, I hope that this good samaritan is found.
http://www.charlotteobserver.com/2013/10/06/4370553/mother-seeks-helpful-stranger.html#.UlLF4DnF-Q0

Hanging in with food allergies

Things have been quiet here and by quiet I mean busy.
The walk is one month away, hard to believe.
School is going well, knock wood. Little one seems happy and she hasn't told me anything that would make me nervous about her class, yay! Let it stay this way.
I was watching a show today that had a celebrity on talking about her child and his food allergies. She said "I did everything right, I breastfed etc and he still has allergies"
I'm not bringing this up to start a debate on breastfeeding by any means. It just made me feel bad, as if she was saying that bottle feeding was wrong. Even the Dr. on the show said that she did everything right. It, to me, was a slap in the face. It made me feel like bottle-feeding moms did something wrong.
Ugh......
Mom guilt stinks.......

Is it just me?

Is it just me or are there more and more articles coming out about food allergies? I feel like every few hours I see a new article about food allergies. Articles about the science of food allergies, articles about living with food allergies, articles about how kids with food allergies should be accommodated or not accommodated, and so on and so on.
Trust me, I think it's great. It opens up that discussion that needs to occur about the growing epidemic of food allergies.

Walking for a cure

Many years ago my little one was diagnosed with really bad environmental allergies. I got on the computer and started doing research about allergies. This led me to read about food allergies. I found the organization, FAAN(now FARE). I volunteered at their annual walk. I thought that if a cure for food allergies was found that maybe a cure for environmental allergies would be found. The next year we found out that she was anaphylactic to tree nuts. Five years later I am still involved with the walk, as head chair. It is daunting and overwhelming at times but so very, very rewarding. If you have a walk in your area, get involved. You can volunteer for the day or join a committee. You can join someone else's team or form your own. It is a fun day for the kids and an opportunity to raise needed funds to find a cure.

Check it all out at foodallergywalk.org

I made the cake.......and ate some frosting

I made a chocolate cake with chocolate frosting today. I poured whatever leftover sprinkles we had on, cut it up, and froze the pieces. My little one is allowed to have dessert once a week at school. Usually she has the prepackaged ice cream. She finally caught on that there is cake there also but, it's not safe. So, I solved the problem by giving myself something else to do. It's ok though, it will make her safe and included. Now, I know what's going to happen. She's going to take her cake to school tomorrow. Her sister that is nonallergic is going to want to take cake to school too. Do I tell her no? It's really for her sister, but how do I tell her that she can't have cake? That doesn't seem too fair.
I think I will be making lots of cake..........

When eczema attacks....

Yuck! Eczema stinks. She hasn't had a flare up like this in a really long time. Her allergy shots have worked wonders and they magically made it disappear, until this week. It's behind her knees, the inside of her elbows and, for the first time, under her bottom eye lashes. I have been putting a variety of creams on her for days and it's finally starting to help. The poor kid is slippery from all the lotion that I have put on her. I know that pollen and ragweed have been bad so maybe that's what is doing it. She was scratching her knees so bad that she opened the dry patch up and it started to bleed. I feel awful for her......
Any advice?

add cake to the list

I make special food all of the time for my child. It's just the nature of the diagnosis. Luckily school lunch is tree nut free. They also have prepackaged ice cream that is safe, yay! They also have baked goods, cake, that is not safe. It has never bothered her until now. She said that she wished the cake was safe so that she can get a piece on Friday's. That's her one day that she's allowed to get dessert. She looked at me with those eyes....I folded like a cheap suit. So, now I will make cake. I will decorate it and I will cut it up into pieces and freeze them. She did the happy dance when I told her. It's not a lot of work and I would do anything for her. It's just another reminder of the diagnosis.

9/11

12 years ago I sat and held my 2 month old as I watched the news unfold. It was awful. I was sitting with her in front of the tv as the 2nd plane hit, then the Pentagon, then PA. I lived a few minutes outside Philly at the time. I thought for sure that they would target Philly too.
At the time our small apartment was filled with boxes. We were moving.
The day before, September 10th, my little one had a checkup.
Then September 11th happened.
On September 14th the movers came for our things. We spent that night at a friend's house and the next day we moved to NC.
That was a long drive. Not only because of the distance but because of the amount of trucks on the highways. Deliveries etc. were set off schedule because of September 11th. The roads were mobbed. I remember every moment of every day that week.
I am thankful that my oldest was so little at the time. She won't have those horrible memories. She won't have those horrible images burned in her mind forever. She didn't have sleepless nights, filled with worry that it would happen again, that it wasn't over.
Never Forget

I'm going back.....

Over 20 years ago I became a teacher. I taught for a long time and then decided to stay home with my kids. The next year my youngest was diagnosed with life threatening food allergies. I guess my giving up teaching happened for a reason. She's 8 now....and I miss teaching. So, I started up a class for little ones. It starts today. I will be out of the house for a few hours. My husband is on phone watch as I will not be able to leave the class.
I am anxious about today. I'm not anxious as to if it will go well or not. I have done everything that I can to prepare for today. I'm worried about my kids. Will this be the time that the school calls because something has happened? Ugh...
I wrote the teacher that I am back to work for a few hours and that if she needs anything she is to call my husband. I should be back well before the bus but I have arranged for a friend to get my little one if I am late. I know that I have covered all of my bases.
It's still stressful.........
http://missingmontessori.blogspot.com/2013/09/to-new-beginnings.html

Did you watch yet?

Did you watch the documentary on food allergies yet? The link to it is in my previous post. I watched last night and I thought it was great. I really thought it was great for those that are not immersed in food allergies, a kind of eye opening, food allergy 101. It was informative, factual, hopeful, serious, and sad, all at the same time. Please find an hour to watch, and then share it.

On the raising awareness front, here is another great article about food allergies.
http://www.nytimes.com/2013/09/08/opinion/sunday/epipens-for-all.html?partner=rssnyt&emc=rss&_r=1&

Food allergy awareness, this Saturday

Set your dvr or get up early on Saturday! The Discovery Channel is airing a documentary about food allergies. Steve Carell is the host. I can't wait. Obviously food allergy families will watch but I hope that the general public will watch also. I believe this could be the beginning of the national conversation.

Here is a preview-
http://vimeo.com/73807334

apples and honey

L'shanah tovah! Happy New year!
Traditionally apples and honey are eaten. We can't because we can't have apples. Pears just aren't the same.
I'm trying to look at the bright side but it's just another reminder of what we can't have.
She's due for her allergy shot today and she needs it. She's sneezy and her eczema is flaring. I hope it brings her relief fast.

week two

We are into week two of school here. It's hard to get back into routine. I mean for me. The kids seem to be doing ok. A little tired but ok.
When do you head back? How is it going, is your school helpful?
I would love to hear how everyone is doing.
Has anyone tried to get food out of the classroom? I mean no food for rewards and no food parties. Were you successful? I am just wondering if it can be done.

fighting the fight

This morning I got up, got the kids off to school and started to make Challah. Yes, I have to bake my own challah so that my youngest can celebrate a safe Shabbat. Kneading the dough is actually therapeutic.
I am feeling down and defeated. I will continue on but, right now, I am down. I am so tired of fighting the fight. This time of year is awful. I hear story after story about schools that are not accommodating children with food allergies. Why does it have to be so difficult? We are not crazy helicopter parents. We just want our kids safe and included. Aren't children more important than food? We are not asking for the moon and the stars.
I just need a break. That doesn't happen in food allergy world. It is a 24/7 job. Of course I would do anything for my child but an hour off, just a little bit of time without worry would be great.

We need food to live. We do not need food to have a life. Why does everything have to include food?

A national discussion

I try to not always post about gloom and doom, I promise. I do know that I have a wonderful life, a great husband, and two great kids. I do know that because of life threatening food allergies, my life has changed forever.
This family has had their life change forever in the worst possible way. They lost their child. Please read about their story. Share their story. Food allergies are severe and life threatening. They need to be taken seriously by all. These kids and adults need our help.
http://www.kcra.com/news/local-news/news-sacramento/parents-of-girl-who-died-of-peanut-allergy-reaction-speak-out/-/12969376/21686610/-/5dla0yz/-/index.html

Educate yourself, your family, your friends, your school, educate everyone that you know.
We need your help now more than ever.

Day one

Day one was a success all around. Both girls loved school. Little one came home so happy and told us that her teacher is funny. Awesome! I had more homework than the kids, tons of forms to fill out times two kids. In the pile was the annual tree nut allergy letter. I have to laugh when it comes home every year since it is about my kid.
Than around dinner time the phone rang. It was little ones teacher. She was calling to say that they day went well etc. Huh? What? OK........
Well that was awesome!
Yesterday I felt like I had an elephant sitting on my chest and the day took forever.
Today is flying by.....let it be this good all year.

A bundle of nerves

So, the kids went back to school today. Little one was up before my alarm went off. She was so excited! She got the teacher that she wanted and she has lots of friends in her class. She has the same bus driver, phew!
I am sitting here counting down the hours until she gets back. I know she will be fine. 5 hours to go.
Trust me, the quiet is nice. I am going out to lunch with my husband and then off to the grocery store.
The beginning of the year is so hard. What do you do to get through?
I just realized that it's been 4 years this month since her last reaction. We have come so far.

Baking all morning

Getting ready for school means I spend a whole lot more time in the kitchen. I just made a batch of cupcakes. Sending 6 to the school freezer and putting 6 in our freezer for birthday and other school parties. Then I made a double batch of blueberry and corn muffins because the kids like to take them for lunches. I was in the kitchen for hours between, prep, baking, and clean up!
Anything to keep her safe..........

and then I slept

Yesterday was our 504 meeting so last night I was finally able to sleep! Yay! I hate when stress keeps me up at night.
Anyway, it went well. I do truly feel like we are a team with the staff at the school.
The teacher is going to remove the air freshener that she has in the classroom(good thing we meet before school starts). The meeting went smoothly and I have my fingers crossed for another good year. I will spend tomorrow baking cupcakes to stock the school freezer. Her medicines and paperwork have been dropped off and open house is Friday night.
How are your back to school plans going? I hope everyone has a smooth transition. It's so hard to get back into routine.

anxiety level:high

504 meeting today at 3:30. Very anxious. Last year went so smoothly, I just want that to happen again. I didn't sleep at all last night....... I wish she would outgrow these allergies.

Why did I think it would get easier?

Little one is going into third grade. So, we have made it through Kindergarten, first, and second. Why did I think that  a little thing like scheduling her 504 meeting would get easier? Silly me......
I have been calling the school for weeks trying to get a meeting on the calendar. They email me today and want to schedule the meeting for tomorrow. Unreal......
I do not work outside the home but I still have a life and my husband works. He attends all meetings, because he wants to be involved in his daughter's life. So, now we are supposed to drop everything, rearrange our day, and squeeze the meeting in to an already packed afternoon.
Feeling wiped out today........
Does anyone have it easy out there when it comes to stuff like this? I would love some tips on making it easy.

A great list

I came across this and had to share, a list of food free options for schools. You know, all those food rewards aren't really necessary.....
http://www.100daysofrealfood.com/2011/10/31/student-rewards…that-aren’t-junk-food/

Little one had her well check today. All good. At her appointment last year she had only gained a pound.....yes I was worried. This year? 8 pounds! Worry no more! Phew!

It's getting closer

Two weeks. Two weeks left of summer break. Where did it go? Why does time have to go by so fast? I am not ready for paperwork, meetings, planning, baking, stressing and so on.
Any tips to make this time of year easier?

Smurfs 2 and more in the news....

Lots to chat about today.

First off, the movie Smurfs 2. My children have been anticipating this movie opening for months. I was all set to take them to see it when I saw the following message from FARE.

PLEASE BE ADVISED: Reviews of the movie “The Smurfs 2,” as well as personal accounts from members of our community, indicate there is a scene in the film that makes light of a child having a severe allergic reaction to peanuts and requiring emergency epinephrine. We want to make you aware that viewing this scene could be upsetting to children. We have reached out to Sony Pictures to express our alarm and disappointment with this material being included in a film being marketed to children.


What??????? Oh you have to be kidding! This really made me angry! How dare they make light of food allergies. As I have said before when something like this happens, would they make fun of cancer, diabetes,heart disease? No, they wouldn't and even if they did there would be an uproar!

A friend of mine took her kids to the movies to see it (they do not have food allergies), this is what she had to say....

We actually saw this today and that scene made me mad! General description: The dad makes a joke about his son's birthday cake being gluten free, egg free, etc. and that it's never even seen a peanut. Then, Granddad comes in with corn dogs for the kids and a parent asks if it has peanuts in it. Granddad says no, a kid at the party takes a bite, Granddad says but it's cooked in peanut oil, parents freak out, say get the epipen, call 911 (this is all played for laughs, by the way). Then the next scene shows the dad talking to the kid's parents on the phone saying he's thankful that the boy's throat is no longer closed. Granddad basically says to the dad that they're all overreacting. And the scene ends on the note of "oh, those silly overprotective parents, these days." Really, really disliked the whole scene. All I could think of was the family of that poor girl in California. 


So, what do I do? Do I take the kids? I would have to let them know about the scene beforehand so as to avoid drama in the movie theater. I know that my kids would not find this funny at all. My first instinct is to avoid the movie all together. I'm also thinking of writing Sony pictures. I would like to let them know that this is not funny. Thoughts? What would you do?

Onto other news....
This makes me sad. I do not know what it will take to get parents of nonallergic parents to understand. Thank you to those that do get it.
http://www.mlive.com/news/index.ssf/2013/07/nut-free_elementary_school_dec.html

It passed in the House!

First off, let me say thank you to all of you. I am over 3,000 page views! Thanks for reading and for sharing the blog, I am grateful.



Here's some amazing news! Onto the Senate now!

U.S. House of Representatives Passes School Access to Emergency Epinephrine Act
Legislation Could Save Lives in Schools Nationwide

FOR IMMEDIATE RELEASE

McLean, Va. (July 30, 2013) - The U.S. House of Representatives voted Tuesday to approve the School Access to Emergency Epinephrine Act (H.R. 2094), important legislation championed by Food Allergy Research & Education (FARE) that will help protect students with food allergies.

The bill, introduced by Rep. Phil Roe, M.D. (R-TN) and House Democratic Whip Steny Hoyer (MD), encourages states to adopt laws requiring schools to have on hand “stock” epinephrine auto-injectors, which is epinephrine that is not prescribed to a specific student but can be used for any student or staff member in an anaphylactic emergency. Anaphylaxis is a severe allergic reaction that is rapid in onset and can be fatal.

“We applaud the House for recognizing the need for schools to be prepared to protect students with life-threatening food allergies by passing this legislation, and we thank Dr. Roe and Rep. Hoyer for their unequivocal support,” said John L. Lehr, chief executive officer of FARE. “This is a tremendous victory, but we still have work to do to enact this legislation. We look forward to working with our champions in the Senate, Sen. Richard Durbin (D-IL) and Sen. Mark Kirk (R-IL), so that this legislation can be approved and sent to the President for signature.”

About half of states have laws or guidelines in place allowing schools to stock undesignated epinephrine auto-injectors. The proposed federal legislation would provide an incentive for states to require schools to stock epinephrine.

In addition to FARE, the American Academy of Allergy, Asthma & Immunology, the American Academy of Emergency Medicine and the National Association of Elementary School Principals have endorsed the School Access to Emergency Epinephrine Act.

When will it end....

Another child has lost her life. Her father was a Dr. and he couldn't even save her. If you have a family member with allergies I am begging you to step up and be an advocate. Do whatever you can to raise awareness. Go to the school, your house of worship, your own Facebook page, join a support group, and talk about food allergies. Talk about food allergies over and over again, to anyone that will listen. We have to do something about this epidemic.
I'm angry today........
http://www.sacbee.com/2013/07/30/5607195/years-of-caution-about-peanut.html


My day did start off well. I took my little one to get her allergy shots. I brought the stack of paper work that the Dr. needs to sign with me. So much paperwork to have a few epi pens etc in school. Anyway....the nurse got everything signed for me then and there! Wahoo! Such a time saver. A great office staff is such a blessing.

A whole lot of nothing....

Hi everyone! Sorry that I haven't been posting as much. We have been enjoying the lazy days of summer so there isn't too much to report. We have been at the pool here and there which has aggravated her eczema.
Here is an article about the relationship between eczema and food allergies.
http://www.webmd.com/skin-problems-and-treatments/eczema/news/20130719/researchers-focus-on-eczema-food-allergy-link

How is your summer going?

Will you help me?

The epi law in NC is going to die for this legislative year if the Senators do not hear from more of us. If you live in NC or know people in NC, please write the Senators and ask them to pass the epi law. 25% of all first time reactions happen at school. This bill is a no brainer in my opinion. It will save lives.
Thank you for your help!

http://www.wbtv.com/story/22852474/parents-pushing-to-get-drugs-in-school-to-combat-allergic-reactions

Here are the Senators to contact:
Senator Tillman (919) 733-5870 Jerry.Tillman@ncleg.net
Senator Soucek (919) 733-5742 Dan.Soucek@ncleg.net
Senator Barefoot (919) 715-3036 Chad.Barefoot@ncleg.net
Senator Pate (919) 733-5621 Louis.Pate@ncleg.net

food allergy paperwork

I saw it on my dresser today. The paperwork that I need to fill out. Every year. I dread it. It's not hard to fill out. It's time consuming. Then the paperwork needs to go to the Dr. Then it needs to go to the school. Then I have to call the school and schedule our yearly meeting, etc. etc.
Now, don't get me wrong, I will do whatever I have to do to keep her safe.
However, the paperwork is a pain in the......bleep!
I will procrastinate for another day then I will start to fill it out.
In other news, she's at golf camp today. I love an activity that doesn't involve food.

It's so nice

It hit me today. I am so much more relaxed in the summer. I've always known that but for some reason it really hit me today. I don't have to worry that I need to run an errand that's far from the school. I don't have to carry the phones around the house with me because the school might call.
I hope the summer goes by slow.......

Yesterday we made red, white, and blue cupcakes. Then we frosted them and decorated them with every junky thing that we could find in the pantry. All safe of course. That was fun!

I just learned that Dairy Queen has an allergen menu online. I am shocked. I automatically assumed that everything in there would be unsafe for us. According to the menu there is plenty that she can have. I do worry of course about cross contamination. Has anyone ever been there with a tree nut allergy? It would be pure joy if we could go there.

Painting

We are redoing the bedroom of our oldest. Anytime we paint we buy the non voc paint. I don't like the idea of all of the chemicals in the house. Since my youngest seems to react to anything and everything, I'm not taking the chance of using regular paint. Who knows what would happen to her. Anyway, why does the non voc paint cost so much? Why does everything that's healthier cost more? Seems pretty backwards to me.
I have a lot of work ahead of me.....clearing the room, filling in holes, putting on the primer, painting, shopping......
I thought summer would be relaxing. Vacation is definitely over.

Back from vacation

I think I am still on vacation mode. It's so hard to get back in the swing of things. I just spent a week at the beach with the family. It was great! Sun, sand, no schedule, it was great!
We rent a house so that we have a kitchen, which of course makes it easier to travel with a food allergic kid. We did go out to eat too. We went to our usual favorite place and added in two new restaurants too. Yes, it always makes me nervous to eat out but they came recommended from other food allergic families so that made it easier.
So, what does the sun, sand, salt water, chlorine and sunscreen do to a kid with dermatographism you ask? Tons! She was such a mess. She was so sunburned after the first day! I felt awful. After that we literally reapplied sunscreen every hour on the hour. That helped. No sunburn after that. On the first day her face became so blotchy out of nowhere that I gave her benadryl. After that she was fine. Now trying to get her eczema under control again.
Do you have any favorite vacation spots? Any tips for traveling with a food allergic family member?

Now to catch up on the laundry........

It's not worth the risk

We took our little one out to eat the other night after dropping her sister off at sleep away camp. We have been to this restaurant a zillion times before. We ate our dinner (after double checking the safety of her meal of course). Then we looked at the allergen menu again and noticed that there were some desserts that were listed as safe for a tree nut allergy. Huh? This is new. We questioned the waitress and she explained that sometimes their food providers change, this would explain the change in safety. She went over "made in a facility" etc, I was impressed with her knowledge. She even checked with the manager. I was wary and did not want my little one to get anything. We explained to the little one that the items were safe but we left the decision up to her. Ugh.....She's only 7. Anyway, she said "I don't want to. I don't want to take the risk."
Yahoo! I was so proud that she realized that it wasn't worth it. We had dessert at home instead.
Of course, now I question myself. Should I have left the decision up to her? What if she ordered dessert and something happened (not likely, I know)? What if she ordered dessert and nothing happened? Would she then think it was ok to order dessert anywhere?
Will I ever turn off my brain? Stay tuned......
My older one comes home from camp tomorrow! Finally!

Oh my heart

Well, we dropped off our oldest at camp yesterday. She won't be back until Friday. I was ok until 2am when I woke up and then stayed awake for two hours. Ugh. This week needs to fly by!
Her little sister is loving it though! She said she hopes that her sister stays away for a year. Nice.....
Little one asked when she can go to sleep away camp. Really? How can I ever send her? Who would I trust?
Someone needs to start a sleep away camp for food allergic kids that's right by my house. Maybe I could handle sending her then.
So, I need lots of stuff to distract me this week. Anybody got any ideas? Good stories to share?
Thanks!

Keeping it cool

Any tips on how to keep epi pens cool during the summer? Have you found a product that works really well?
I have always had them in a lunch bag with an ice pack near them to keep them cool. This year I am trying an insulated bag. I will let you know how it works.......
I wish epi pens would not go bad if they got too hot or too cold, that would make life easier.

The last day

Well, here it is, the last day of school. Very hard to believe. My kids are finishing up second and sixth grade. It was the perfect year. The both had amazing teachers, they had fun, they were safe, and they learned. It truly takes a village and ours is amazing.
Now onto summer. They will get on each others nerves and fight but hopefully there will be lots of fun too. I get to relax because I don't have to worry about getting "that"phone call.
Now, if we could just get all of this rain to go away....

A poem

I heard this poem for the first time yesterday. I think it's brilliant so I just had to share it.
Enjoy and have a great weekend!
One more day of school....

Mother Teresa's Anyway Poem

People are often unreasonable, illogical and self centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have, and it may never be enough;
Give the world the best you've got anyway.
You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.

The last lunch

We went to have lunch with the little one. Last lunch together is second grade. Hard to believe. What a great year it has been. She has been safe, loved, and included. It's all I can ask for.
Then we were off to the middle school award ceremony. Best overall science student for her team! So proud.
Lots of rain here, right into the weekend. There goes all the pool plans. Good thing I bought a few new nail polish colors yesterday. I see manis and pedis in our future!
Two more days of school........

Summer camp

For us there are three days left of school. Hard to believe. Do you have summer plans? Are the kids going to camp?
If you have allergies or another medical condition, can you share how you handle camp?
My daughter has been to dance camp(a few hours with someone that I know and trust). This year she is going to golf camp(only 1 1/2 hours for four days). I don't know if I will ever be ready to send her to a full day camp.
Here's a great article about summer camp.

http://community.kidswithfoodallergies.org/blog/summer_camp_guide_for_food_allergies

The best sleepover ever!

My youngest had her bff over for a sleepover this weekend, her very first time having a friend stay the night. It was a huge success according to the girls. Pizza, movie, junk food, oh my! They actually did sleep too.
Makes me kind of sad. My little one has severe pet allergies. She can't be in a house with furry animals so most of her sleepovers will be here. How will this affect her later in life? She can't go anywhere so she's always with us. She has slept over my parents house but that's it.
This is what keeps me awake at night, worrying about her future.......I need a nap.

inspiring

Do you ever feel run down and just done? It's not just me is it? I feel beat. Done. I just want to lay down! I think it's the end of the school year disease. Activities and homework are winding down. Standardized testing is almost over. For us there are 6 school days left. Plenty to do in that short time. Parties, award ceremonies, field trips and so on. I need some inspiration to keep going, to stick with it, and to be motivated.
Well, here it is. Remember yesterday I told you about a budget meeting that was occurring in Charlotte?  An amazing woman has worked tirelessly on this for over a year. The meeting went great and she is getting tons of press today! She is a trailblazer, and a huge inspiration to me to keep going, to keep working, to keep fighting. Go Teri!

http://www.wsoctv.com/news/news/local/proposed-county-budget-includes-funds-11-more-scho/nX7Yt/

http://www.wbtv.com/story/22462306/meck-cty-commissioners-hearing-it-from-public-about-budget

If you are in the area

There is a huge meeting tonight in Charlotte in regards to getting more full time nurses in schools.

Come TONIGHT to support getting more school nurses in our schools! Meeting starts at 6pm at the Government Center at 600 E. Fourth Street. 
WEAR RED and hold one of our nurses signs. If you can only do one thing to help, please attend this meeting. We will start to gather outside the meeting room around 5:30pm Bring your kids or get a sitter and bring friends! For more information, email Teri Saurer at tsaurer@carolina.rr.com Directions: 77 to 277N exit 2A-Third and Fourth St.-left onto Fourth St. Pass building on left with media trucks-quick left onto Davidson. Park in garage on right. Use mapquest or GPS. Address is 600 East 4th Street. 

http://www.wcnc.com/news/local/Students-parents-push-for-more-school-nurses-at-CMS-209477381.html

The long weekend

I hope everyone had a great long weekend. My long weekend was great, we did practically nothing and it was fantastic. So fantastic that it's already Wednesday and I am still feeling lazy.

The school year is almost over. My oldest started standardized testing today. Ugh. I could write volumes on standardized testing. I probably will write about it today on my other blog. Did you like that shameless plug?
http://missingmontessori.blogspot.com/

Update:

 Contact your local Senators and the Senators on the Education Committee. Tell them to support HB 824! This is the last chance. SB 700 did not make it pass the crossover deadline so it is dead! But the sister HB 824 passed the House and now is waiting in the Senate Education Committee waiting to be heard and eent to the floor for passage.

Don't let our Senators forget how important it is to ensure our children are protected by the non-specific epinephrine requirement in schools. Tell them why this legislation is important to you.

Also, tell your friends that this is the perfect time to sign the change.org petition if they have not already signed. Get your children in the schools to sign the petition to and send their letters to the Senators!

Here are the email addresses of the key senators, but you should contact your local senators as well.
http://www.ncleg.net/gascripts/Committees/Committees.asp?sAction=ViewCommittee&sActionDetails=Senate+Standing_69

Ice cream

Ah, the often dreaded end of year party is coming. Time to defrost another cupcake I thought. Then I find out from the teacher that the kids want ice cream at the party. Ugh, even worse for us than a cupcake. Oh not so though! The amazing teacher suggested ice cream sandwiches because my daughter can have one of those from the cafeteria! Brilliant! Ice cream problem solved.
I love amazing teachers.

One of my loyal readers and friend :) posted the following link in the comments yesterday when I brought up making an emergency box.http://www.essentialpacks.com/Deluxe-Emergency-Bucket-Kit-4-Person-392
It is pricey but it must work out cheaper than getting everything separately and it is nut free!
Awesome!

Blessings

I am so blessed to have amazing friends. Over the weekend I took my 7 year old to a birthday party. This was her bff's party, very exciting. I had it in my mind that I would drop her off and leave and come back to pick her up. I had never done this before. Leaving a food allergic child at a party? Not me, no way! Well, I am very good friends with the mom so I felt like this would be the time to try. I went over everything with the bday mom. I gave her the safe cupcake, and the epi-pens (after a retraining that was requested by the mom). I then told my daughter that we(husband and I ) were leaving to run errands and that we would be back. Her eyes flew out of her head. She looked scared. I told her that everything would be ok and that bday mom had her medicine and cupcake. I kissed her and left before I started to cry. We didn't go far. We walked around the shopping center and then sat a restaurant right next door. Hey, it's a start right?
Later I asked my daughter how she felt about being without us at the party? She said "I was scared at first but then I got over it." Ha! Gotta love kids.
If you have a food allergic child, have you left them at a party? How did it go?

I am counting my blessings today after seeing the destruction in Oklahoma. It is truly heartbreaking and it got me thinking. What if something like that happened here? I know what closet we would hide in. I know that I would grab the kids, the epi pen bag, and their bike helmets if I had time. What would happen after? What if our house was destroyed? I need to make an emergency box. Flashlights etc. And safe food! I can't guarantee that we would have access to safe food. That scares the you know what out of me. Do you have an emergency box? What's in it?

Friday

I usually don't post over the weekend. So, I hope everyone has had a good food allergy awareness week. I love all of the sharing that I am seeing in social media this week. It can only be good.

Look what I got myself this week, it just arrived yesterday. I love it!

http://www.amazon.com/Heirloom-Finds-Crystal-Awareness-Necklace/dp/B00B7BZWAE/ref=sr_1_1?ie=UTF8&qid=1368799876&sr=8-1&keywords=teal+awareness+necklace

Amazing dad

Look at this article about a dad that is raising awareness this week for food allergies!

http://blog.foodallergy.org/tag/rowing/

Thank you to everyone for all that you are doing this week to raise awareness for food allergies. From sharing the blog, to sharing ideas and pictures on Facebook , it really means a lot. So, I say thank you!

It's strange to think about our journey over the past four years and think about what it would be like if food allergies had never entered our home. Oh, wouldn't that be nice. I do know that if we hadn't been affected by them I would not fully understand them, I would not be the vocal advocate that I have become (I swear I really am shy), and I would not have met some of the most amazing people that I now call friends. I am truly grateful for those that I have met and continue to meet. You all inspire me everyday.

I learned something new

This is what I love about food allergy awareness week, the passing on of knowledge. Knowledge is power.
Yesterday I learned that boys are more likely to have food allergies than girls. I learned it from this amazing blog.
http://punkymama.com/

Even though I am involved with food allergies deeply and daily, I still can learn something new.
What have you learned this week?

Awareness

I will shout from the rooftops this week if it helps.

It is food allergy awareness week!

Do you know that 1 out of every 13 children have a food allergy? That is a staggering number. That is roughly 2 kids in every classroom.

Every year my little one brings in something to give to her friends and teacher. Just a little something to say thank you for taking such good care of her. This year she is bringing everyone a certificate. The certificate can be found at
http://www.foodallergy.org/food-allergy-awareness-week


What are you doing to raise awareness this week?

News in our world. Grass, Mother's Day and awareness.

I have lots to report today.
Lets go back to Friday. My youngest had field day. She had a blast being outside for two hours playing games and such with her friends. She came home tired but happy. We later went outside to play with friends. Without telling me she decided to roll in the grass. We came inside at dinner time and I could not believe my eyes. She looked like she got attacked by an angry cat. She was red and scratched from her ankles up. I got her in the shower right away. She also got a dose of benadryl. It really didn't help. Yesterday was the first day that I saw any improvement. She can't win........

Mother's Day was lovely. A quiet and beautiful weekend with family. There is nothing better than those homemade cards from children.

This week is food allergy awareness week. A great time to spread the word, educate, and raise awareness. If you need any tips on how to spread awareness just let me know. Here are some ways to get you started.

http://www.foodallergy.org/
Go to the above link to learn about a wonderful organization called FARE,food allergy research and education.

Go to this link to join a food allergy walk near you
http://www.foodallergywalk.org/site/c.ahKPI6MIIeIYE/b.8529309/k.BED9/Home.htm
I have heard that the Charlotte, NC walk is awesome!  :)

The next one is a must share. It is the new PSA that FARE just put out today. Please share, it is awesome and so needed! I hope everyone has a great week, do what you can to raise awareness!
http://www.youtube.com/watch?v=_0AfuBAsJKY

A challenge

Next week is food allergy awareness week. I read this great post from a fellow food allergy mom blogger and I felt the need to share. This is a great idea! Enjoy, share, and help to raise awareness.

http://allergenmenumom.com/2013/05/09/food-allergy-awareness-week-challenge/

Thank you Governor!

A huge thank you to the Governor for issuing a proclamation that recognizes food allergy awareness week! It starts next week!

http://www.governor.state.nc.us/newsroom/proclamation/20130512/food-allergy-awareness-week

Share the good news and help raise awareness!

A horrible coverup

This story makes me sick. I was a teacher, I have friends and family that are teachers. These two are not teachers. True teachers wouldn't do this.

http://www.omaha.com/article/20130507/NEWS/705079937/1685#peanut-butter-cover-up-costs-teachers-their-jobs

Apple muffins, shirts, and rashes, oh my!

I found a safe (nut free) brand of apple muffins. I made them and held my breath when they tried them because we all know how well the apple pie went over. Success! The muffins were a hit!

All of the children get a shirt to wear this Friday at field day. Usually I have her wear it over a shirt because they don't get washed first but it might be warm so I brought it home to wash it. She can't wear new clothes that have not been washed first. We learned this the hard way as we do most things around here. Two days before her first anaphylactic reaction she had a reaction to a pair of pants. It was the one and only time I let her wear something before it was washed. She broke out in a horrible rash right where the inside of the pockets touched her thighs. It started out small and got worse and worse. It took a while for it to go away and then she went anaphylactic on us from the walnuts two days later.

I will always wonder why the pants made her break out so severely. What was on those pants? Or, now that we know that she has dermatographism, was it that? Has anyone else ever broken out from an article of clothing?

Craziness

I have nothing to report from the food allergy world. I will however say that this time of year is crazy! I actually think it's worse than Hanukkah/Christmas time. So busy. Running around like crazy trying to get a million things done. Is school over yet? June 10th can't get here fast enough.
In other news, there is this bright yellow thing in the sky. I believe it is called the sun! I haven't seen it in so long I have forgotten what it is. Of course, I'm so busy trying to get stuff done that I can't get out and enjoy it......

TGIF

Hello Friday! It is nice to see you!
I don't know how the weather has been where you are but it has been awful here. Cold, cloudy and rainy on and off and it's not going to end anytime soon according to the weather man. I need some sun!
Anyway, all this lousy weather makes me lazy. When I'm lazy I sit around and think. All this thinking let me to the great idea that I should start another blog. What? Yes, another blog. About something that I love, Montessori education. Am I crazy ?

Dermatographism

At our last appointment we received a new diagnosis of dermatographism. Say what? It is a big fancy word for really sensitive skin. She has probably always had it but now it has been given a name. There is nothing that we can do about it unfortunately. I have looked it up on the internet. Does anyone else do that? Do you look up conditions on the internet? Dangerous, isn't it? I looked around for a minute and then closed it down because I was freaking myself out. I have got to stop doing that! Anyway, some people break out into hives for no reason. Others, like my daughter, have the "skin writing" aspect of dermatographism. The doctor could literally write on her with a stick and the area turned red and raised.
Who knew this existed? Not me that's for sure.

Classification and labels

How do food allergies get classified? Do they even need to be classified? Should they be classified as an illness? She isn't sick in the traditional definition. Under law life threatening food allergies are a disability. But is she disabled? No. She can do whatever everyone else can do (besides eating certain foods). Should food allergies be classified as a disease? That doesn't sit well with me either.
It's strange not being able to put a label on your child's condition. Maybe that's it. Maybe the word condition covers it.

Running in circles

I was chatting with the hubby this morning about how much there is to do between now and the end of the year. Then we talked about how busy June will be. July and August shouldn't be too bad. Then we talked about how school will start again and then we have this and this and that and this and all of a sudden it is next summer! How does this happen? I don't even consider us busy people. Does it ever slow down?

Well, we tried

My little one had to be off of her twice daily allergy medication for three days to have the skin test. The day of the skin test she had benadryl because of the reaction. Since she was off of the medicine we tried an experiment. We kept her off of it to see how she does. She's been doing shots for 3 1/2 years so we thought that we could take her off of the medicine. That worked great until last night. She sounded slightly congested and she started to cough. She got up this morning and still sounded slightly congested and was still coughing a little. I could hear it in her chest. Back on the medicine! The slightest cough from that child sends us in a tailspin of worry, fear, and bad memories. During her first anaphylactic reaction she coughed. A horrible sounding cough. As a toddler she was constantly on breathing treatments. Every cold and environmental allergy attack ended up in her chest. I must sound like an over protective crazy person but I also know what a cough for her means. She has gone 4 years without a breathing treatment and we are not going back to that. So, a little allergy medicine will be used. Maybe we can try going without the medicine another time, just not now.

Speechless.........again

I am speechless. Another senseless death of a child that could have been avoided. I can not begin to imagine the pain that this family is in.
I'm going to ask a favor today. Do something to raise awareness about food allergies today. 1 out of every 13 kids has a food allergy, to me, that is an epidemic. Tell your friends, your family, your school about food allergies. Raise awareness. Food allergy awareness week is coming on May 12. Do something at your school, your work, your neighborhood. We need to educate everyone about this condition before another life is lost. Food must be checked, epi must be carried.
Please throw any questions my way.
Thanks.

http://www.sltrib.com/sltrib/news/56217364-78/allergy-tanner-henstra-allergies.html.csp

Trying apple pie

I went to the grocery store yesterday and picked out a frozen apple pie. I was not even going to try and make one from scratch to find out that the kids don't even like it. I popped that pie in oven and we tried it last night. It smelled amazing. We served it up, they tried it, said they liked it, and then they barely ate it. I think they were just humoring me.

Picky kids.......

It was good. I think it tasted even better to me because I haven't had it in years.

Looking for apples

So, I hit the grocery store today. As you know, it is not my favorite thing to do. Anyway, I went looking for products with cooked apples so that my daughter could try them. I found apple pie, that is in the oven right now. I had it in my mind that I would make apple muffins too. Well, the mix is not safe for tree nut allergies. I literally almost threw the box across the aisle. Grrr.....
Does anyone know of an apple muffin mix that is safe for tree nut allergies? Do you have any recipes with cooked apples in it that you would like to share?
Thanks!

Image courtesy of-freedigitalphotos.net Keerati

Returning to our normal

Trust me when I say I am thrilled that we can add apples back into her diet. It is great news. However, I am struggling today. I was told by moms that know that an unpassed skin test would lead to this. They were right. It starts the grieving process all over again. I don't think it's strange to use the word grieve in this case. No, it is not a death. But, life threatening food allergies do change the course of our lives. It changes the course of the life we had planned but if there is one thing that I have learned, it's that we can plan all we want but life will continually throw us curveballs. I was under no delusion that the tree nut allergy was gone but it was nice to day dream. To not have to worry when she's not with me, to be spontaneous, to not have to bring food to every event, to not have to worry....about everything. Well, that would have been nice. And, four years later, we do have a handle on her allergies. It just would have been really nice......
Maybe next year.

Since I am a wanna be writer and not a real writer, I will share the following with you. It's one of my favorites.


c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Skin test results

Well, today was the day. We woke up and had a nice breakfast, sent her older sister off to school and we headed to the Dr. We chatted about her medical history etc. Then it was time for her to get poked. They wrote on her skin (that cracked her up). They tested her for apple, applesauce, walnut, birch pollen, the control and the histamine. She said it hurt but she barely flinched and no tears. Much easier than the blood test. They test for birch because that cross pollinates with apples. We waited the 15 minutes and saw hives at the control, the histamine, and the walnut. We were right. Still no eating of tree nuts here. The control is not supposed to react so she has been diagnosed with dermatographism. That's very sensitive skin. To confirm the diagnosis the Dr. ran a wood stick (the medical kind not one from outside) along her arm and she turned red from that. Unreal........
She did not react to the apple, applesauce, or the birch. The Dr. said that we could food challenge the apple and sauce today. Little one did not want to eat the apple today so we will push that off to summer. She did eat applesauce today and she passed. She's a very happy camper.
She has had a nice dose of benadryl. Her arms look so much better already. She's now relaxing on the couch watching Brave.
She picked where we will eat out tonight, Moe's. Yummy! Strangely enough it's right next door to Sweet Frog. I see frozen yogurt in our future.

Have a good weekend

Not much for me to say. I am pleased that this week went by fast. I'm counting the minutes until Monday. I hope everyone has a fun and safe weekend. My thoughts continue to be with Boston. I had to walk away from the tv, I can't imagine the stress that everyone up there is feeling. Also thinking of everyone in Texas too. Been a rough week.......

Test results

Well, two weeks to the day we got the test results. It's taken me a few days to get my head straight. So, here we go. The results are good. Her numbers are low enough that the Dr. wants to skin test. That is the next step in the process. If she breaks out in hives from the test then we are done and we carry on as we have been for the past four years. If she does not break out then we will schedule food challenges. This means going back into the office for every tree nut and apples too. She will eat increasing amounts. The amounts increasing about every 20 minutes or so unless there is a reaction, in that case the food challenge is over. I can't let myself look too far ahead. I need to just keep my eye on Monday. One test at a time. I can't let myself think ahead to watching her eat walnuts. They almost killed her four years ago. How do I let her eat them? What if all her allergies are gone? We go back to a normal life. What is a normal life? I don't even remember what it's like.
Oops...just got ahead of myself.
Lets get through Monday first. Fingers crossed.

I am not a runner....my thoughts on Boston

Boston. A city, in a series of cities, stuck now in our minds forever. Another city marred by extreme violence. Another national tragedy that I have to explain to my children.
I am not a runner. Never have been never will be. It is just not my thing. I am in awe however by anyone that runs for any distance. 26.2 miles? That's amazing in my book. I am sure that this horrible event has rocked the running community to its core. I do hope that those of you that are runners continue to run. Don't let it stop you from training and meeting your goals. Don't let whomever did this win. We will win, good will win, love will win, peace will win. One day.

fundraising

Do you have any experience in fundraising? My background is teaching. I taught pre-school and kindergarten age children before I decided to stay home. After my little one was diagnosed with life threatening food allergies I felt as if I couldn't sit home and do nothing about it. I was motivated to get involved. I feel like I have to do something to raise awareness. Also, a cure will not be found without researchers and those researchers need money. So, I because involved with FARE. Food allergy research and education. Formerly FAAN, the food allergy and anaphylaxis network. Anyway, we hold a walk every year and the money raised goes to research.
Fundraising isn't easy and it makes me uncomfortable to ask people/companies for money. Here is a link for the types of fundraisers that can be done with FARE. Do you have any other ideas? Have you been to a charity event that you thought was great? Share the details.
http://www.foodallergy.org/fundraising-events

Great video

Here is a wonderful video for your Sunday viewing. It's all about super nanny Jo Frost, her food allergies and the Food allergy research and education walk program.
Enjoy!
http://www.youtube.com/watch?v=GPaleIQONPU

Too many ideas

I did not have a planned post today not because I didn't have any ideas but because I have too many ideas. I have so many ideas on what I want to do with the blog, more books to write, etc. etc. I am a very organized person but I'm having a hard time keeping track of all my thoughts. I have been reading a book about blogging called Blog Inc. which is very interesting and it is sparking lots of ideas.
http://www.amazon.com/Blog-Inc-Blogging-Passion-Community/dp/1452107203/ref=sr_1_1?s=books&ie=UTF8&qid=1365781525&sr=1-1&keywords=blog+inc

Does your brain ever get over run with ideas? What do you do about it, how do you organize everything?

I have found that Pinterest is full of great ideas! I can spend hours at that site.

Do you have a home office, is that where you blog from if you blog? How do you keep it all organized?

I hope everyone has a great weekend. It is going to be beautiful here. My oldest will be camping this weekend and my youngest has her first golf lesson, they are both super excited!

The waiting......food allergy testing

The waiting is the hardest part......
http://www.youtube.com/watch?v=uMyCa35_mOg

Enjoy the music!

I would love to know why blood test results take so long. Why does it have to take two weeks. I am very impatient about stuff like this. I have been staying very busy but my mind wanders often. What if her levels are worse? Well, that means that nothing changes. We carry on as we have been for the last four years. What if her numbers went down? That would lead us to the skin test. The scratch test. That won't be fun for her but I don't think it will be as bad as the blood draw. Once they do the test we will have to wait for about twenty minutes to see if she reacts. Hives, redness, welts etc. If she does react, then we are done and we carry on as we have been. If she doesn't react...if she doesn't react....I'm afraid I will faint, cry, do an embarrassing happy dance in the allergists office. That will lead us to many food challenges, "the gold standard" as they are known in the allergy world. We did a coconut food challenge a few years ago just to make sure that she could have it. It took forever. I was so stressed and this was a test to a food that I knew she was not allergic to. They checked her vital signs and skin first. Circling some eczema spots on her skin in pen (she thought that was awesome). Then she ate a tiny amount of coconut and we waited. The Dr. came back, checked her vitals, and then gave her some more. This went on for a few hours. I can't even begin to imagine how many food challenges that she will have to endure for tree nuts. OK, I just looked through her past test results and there are ten nuts that she would have to food challenge for. 10! I also can't imagine letting her eat nuts. How can I watch her eat walnuts when that is what almost took her from us?
I am so getting ahead of myself. I hope I haven't set myself up for major disappointment.

In today's news.....

I have a mish mash of a post today for you-

Rejection number two came yesterday. While waiting in the car pool line I checked email. There it was a lovely form letter, no book published yet.

The NC epi law has four senators that have signed on.....
http://www.ncleg.net/gascripts/BillLookUp/BillLookUp.pl?Session=2013&BillID=sb+700&submitButton=Go

If you have not written your Senators, please do so. If you have written your Senators, please write the other ones, share this with friends and family. We need your help to get this passed!
Thank you!
Here is all of the information-
Senate Bill 700 (Non-Specific Epinephrine in Schools) was referred to the Health Care Committee today and the Committee needs to approve it, so the whole Senate can vote on it. Please find the members that represent you and email them AS SOON AS POSSIBLE. FORWARD THIS, FACEBOOK THIS, SHARE WITH ALL FRIENDS AND FAMILY! If you can't find your county listed, just email the three chairmen of the committee, Sen. Hise, Sen. Pate, Sen. Tarte. A sample email is at the bottom of the page. Thank you all so much for your help getting this very important legislation made into law, PAK Coordinators!

Co Chairman: Sen. Ralph Hise (Madison, McDowell, Mitchell, Polk, Rutherford, Yancey) ralph.hise@ncleg.net
Co Chairman: Sen. Louis Pate (Lenoir, Pitt, Wayne) louis.pate@ncleg.net
Vice Chairman: Sen. Jeff Tarte (Mecklenburg) jeff.tarte@ncleg.net

Members:
Sen. Austin M. Allran(Alexander, Catawba) austin.allran@ncleg.net
Sen. Chad Barefoot (Franklin, Wake) chad.barefoot@ncleg.net
Sen. Stan Bingham( Davidson, Montgomery), Stan.Bingham@ncleg.net
Sen. David L. Curtis (Gaston, Iredell, Lincoln) David.Curtis@ncleg.net
Sen. Don Davis,( Greene, Lenoir, Pitt, Wayne) Don.Davis@ncleg.net 
Sen. Jim Davis, (Cherokee, Clay, Graham, Haywood, Jackson, Macon, Swain ) Jim.Davis@ncleg.net
Sen. Fletcher L. Hartsell, Jr., (Cabarrus, Union) Fletcher.Hartsell@ncleg.net 
Sen. Neal Hunt,( Wake) Neal.Hunt@ncleg.net 
Sen. Eleanor Kinnaird, (Chatham, Orange ) Eleanor.Kinnaird@ncleg.net
Sen. Floyd B. McKissick, Jr., (Durham, Granville) Floyd.Mckissick@ncleg.net
Sen. Earline W. Parmon, (Forsyth) Earline.Parmon@ncleg.net 
Sen. Ronald J. Rabin, (Harnett, Johnston, Lee ) Ronald.Rabin@ncleg.net
Sen. Shirley B. Randleman, (Stokes, Surry, Wilkes) Shirley.Randleman@ncleg.net 
Sen. Gladys A. Robinson, (Guilford) Glads.Robinson@ncleg.net
Sen. Bob Rucho, (Mecklenburg) Bob.Rucho@ncleg.net
Sen. Josh Stein, (Wake) Josh.Stein@ncleg.net
Sen. Tommy Tucker, (Union) Tommy.Tucker@ncleg.net
Sen. Trudy Wade,(Guilford) Trudy.Wade@ncleg.net 
Sen. Mike Woodard, (Caswell, Durham, Person) Mike.Woodard@ncleg.net

Dear Senator:

I am a resident of ________ County. As my representative, I am urging you to fully support and help sponsor Senate Bill 700. My child/My grandchild/My dear friend's child has severe food allergies/bee allergies and this could save his/her life at NO COST to the state. 13 states have already passed similar legislation. 

You may recall, an elementary school girl 100 miles from Raleigh, died from anaphylactic shock at her public school. Her school did not have an Epi Pen and deadly reactions happen so quickly, paramedics didn't get there in time. The death was completely preventable! 

Please help the children of our community. If you have any questions or if I can be of further assistance, please contact me. 

Sincerely,

XXXX YYYYY





Last topic for today-We went to a new restaurant! Well, it is new to us. Buffalo Wild wings. They have an allergen menu online and the manager and wait staff were very helpful. We had a great time and the food was good too!
Here's the information on the allergen menu in case you need it.
http://www.buffalowildwings.com/Global/bww_allergen_list.pdf


I hope everyone has a great day! The weather is amazing, it went from winter to summer again. Will we ever get a spring?