Monday, December 20, 2010

Terribly sad news...13 year Old child dies from Food Allergy

Just read about a 13 year old girl who died from a food allergy at a school Christmas Party.  I can not express how heartbreaking I find this.  Even more than heart breaking, I have so many questions! What was she allergic to? Where were her Epi Pens? Did this event happen during the day? Where was the school nurse? and Why, Why, Why? did this child have to die for schools to understand how serious food allergies are?  Just when I get comfortable and confident in managing my child's allergies I see something like this and the cascade of emotions come tumbling out again.  It's a reminder that we can never be too vigilant and you must remind your child to ASK ASK ASK, carry your Epi Pens and if you are not sure-don't eat it.  Prayers and heartfelt sympathy for this family. I have a good mind to bring this to the attention of my daughter's school.  They are so lax and laid back about food allergies it really reminds us how we need to educate those who care for our children.  Hug your babies tonight in honor of this girl.
http://abclocal.go.com/wls/story?section=news/local&id=7854968

Sunday, December 12, 2010

Alexa's 1st official restaurant meal!!

Yesterday was a big milestone for our allergic girl.  She went to her first real movie, Tangled, where she ate real movie theater popcorn instead of Mom packed popcorn and she went to Johnny Rockets for lunch where she ate her 1st meal off the kids menu!!  I'm sure some of you are shocked to hear she's never eaten out, but with more than seven allergies it's just too risky.  The chance for cross contamination with egg, soy, or nuts is just too high.  We have allowed her to eat things like french fries, steamed broccoli, fresh fruits, or salad but never anything that is really prepared by the restaurant.  I just don't trust the kitchen staff to get it right.  Yesterday I was feeling brave so even though I had packed her a slice of pizza I decided I would see if we could find something safe on the menu.  For those of you who do not have food allergies or a food allergic child, this is requires asking LOTS of questions and not being embarrassed to ask the restaurant management to accommodate you.  I started with the french fries since she has been able to eat them at other restaurants.  Here's how I went about it.  First, I found a helpful staff member, then I explained that Alexa has multiple food allergies and listed them for him.   Then I asked, what kind of oil do you use? Is any other oil ever used in that friolator? Are the French fries cooked in their own friolator or do they share it with other items? Turns out they are cooked in vegetable oil (ok for Alexa) and in a separate friolator-so thumbs up! Next I asked about the hamburgers. What is in the hamburgers? Do they add soy or any other product? Where are the burgers cooked? Do you cook egg on the same grill where you cook the hamburgers? The burgers were pure beef and cooked on the opposite side of the grill from the eggs so they were safe.  However, when we moved on to the buns we  found that they contained eggs.  I asked Alexa if she wanted a burger without the bun, but she didn't so we decided to have French fries and the pizza I had packed.  After we sat down, Alexa looked at the menu and said, "Mom, they have hot dogs here-can I have a hot dog?" So I went back to the same gentleman and asked to see the ingredients in the hot dogs and the hot dog buns-viola! they were safe!! You should have seen the look on her face-pure heaven! She even ordered it herself like a big girl.  I know to most people this probably seems insignificant but it was a big moment in her allergic life! How big? Well, this morning when I was making breakfast she said "Mom, I'd like to order a bagel with butter please".  I laughed and said "You really enjoyed eating out yesterday didn't you?" and she replied "Yes, it was so great that the food was safe for me-it was like a Miracle".  Out of the mouths of babes.....

Monday, November 29, 2010

STUPID HASBRO, STUPID FOOD ALLERGIES!

Now that Thanksgiving is over we're focusing on preparations for Christmas.  Alexa made a few gift requests and one of these is the Easy Bake Oven by Hasbro.  I had one as a child and love it-even though it never really worked and the cakes tasted terrible, it was MY oven and I loved it!  Yesterday, Alexa received a video message from Santa which mentioned said Easy Bake Oven (I should have investigated first!).   At dinner last night, Alexa says "you know-I bet Santa will make me a special safe Easy Bake Oven, one that doesn't have anything I'm allergic to.  Do you know why? Because he makes them in his workshop with his Elves so he can make one special for me!" Yep.  I thought "oh CRAP! I screwed up!" but said, "That's good thinking Alexa, maybe Santa can do that.  We'll have to wait and see." So today woke up thinking "I hope I can pull this off!"  I went online to Hasbro to research the mixes.  I could not find the ingredients for any of the mixes (even though their customer service "help" center says they are listed there).  So, after dropping Alexa off at school, I made a special trip to Toys R Us.  I found the Easy Bake Oven and to my dismay the box says "May contain traces of Peanuts and/or Tree nuts" GREAT! Thanks Hasbro!!  I can not tell you how frustrating this is.  I literally want to cry.  I searched around the store to see if there was anything else similar that might work.  I found a "Blooming Cupcakes" kit which is safe but it's not an "oven" and I'm not sure this would be a suitable replacement since she's really more interested in the actual oven than the cakes.  This sucks. Why in the world did she have to ask for a food related toy? What is an allergy Mom to do??? So now I'm in "fix it" mode.  How can I make my little girl happy and fulfill her Christmas wish?  Option 1.) Get the Blooming Cupcake Kit without the oven and hope she's happy to have a special cupcake mix even without the oven.   2) Buy her a toaster oven, decorate it all pretty and tell her it's her "special oven".  3.) Buy the damn Easy Bake Oven (I do NOT want to give Hasbro my money!) and replace the poison cake mixes with packets of Cherrybrook Kitchen cake mix in little packets with ribbon and a note from Santa-then PRAY they cook in the damn oven.  (The box says "use only the Easy Bake oven mixes" but I'm pretty sure that's just a marketing gimmick.)   Knowing Alexa,  I think option 3 is best but I really have a hard time supporting a company that excludes an entire population of kids because they want to cheap out on manufacturing costs.  It just feels WRONG and I'm angry and disappointed.  This is just another example of how our special girl is challenged just to enjoy life as a kid without worry or being "left out".  I'm going to do more research online for other "oven" toys and try to show her the other kit and see if she is excited about it.  I'll let you know what we decide.  At least the company that makes the Blooming Cupcakes didn't exclude the peanut/nut allergic!!  Good Job Crafty Cooking kits and Thank you!!

Wednesday, November 24, 2010

What's for Thanksgiving?

I've noticed allergy bloggers discussing holiday tips and recipes this week and since I enjoy riding the band wagon-here's my allergy friendly menu.  Our meal will be free of: Peanut, Treenuts, eggs, soy, chickpeas, and all legumes (except greenbeans).

Menu:
Roasted Chicken (we decided against turkey since there are 4 of us and no one is a huge fan)
Stuffing (Pepperidge Farms makes a soy free mix-thank you Pepperidge Farms!)
Mashed Potatoes (ssshhh! This year I'm buying them from Fresh Direct to save my sanity)
Gravy-home made of course
Green Beans with lemon Butter
Cranberry sauce (from a can *cringe* but it's hubbies favorite)
Grands Biscuits (yes the Pillsbury kind because my allergic girl LOVES them)
Homemade Sweet Potato Gnocchi (my first try-wish me luck!)
Homemade Pumpkin Pie (Cybele Pascal's recipe in her Allergy Free Baking Handbook-I bought a graham cracker crust instead of using her gluten free crust recipe)

Is that enough for 2 adults and 2 young children?  I'm full just looking at this menu!

Basic Recipes:
Roasted Chicken is easy enough.  A little salt, pepper, garlic inside and out before hand and then into the Rotisserie so it self bastes.
Stuffing: celery, mushrooms, onion, and Jones pork sausage (in place of Jimmy Dean which I could not find *sniff sniff*).  Brown up the sausage, onions, and celery.  Add this to the Pepperidge Farm Stuffing Mix, add desired amount of chicken broth (we use Kitchen Basics which is allergy free) and perhaps some cranberries.  Store over night and bake in the morning until heated through and yummy!
Gravy: I could tell you but then I'd have to kill you (har har har).  can't use pan scrapings since I'm doing a rotisserie chicken so I'll brown up the "innards" and neck the night before and use that as my base.  A little flour to thicken, salt, pepper, thyme and your done.
Mashed Potatoes: warm per package instructions-could THAT get any easier?
Green beans: wash, trim, steam in steamer.  Pour a small amount of melted butter with lemon over them.
Sweet Potato gnocchi: I'm hoping to get out of making these.  Basic recipe is cooked, mashed sweet potatoes mixed with flour until a dough forms.  Roll into snakes, cut into small pieces, roll with fork, freeze and boil when ready to make them.
Pumpkin Pie: follow Cybele Pascal's recipe in her Allergen Free Baker's Handbook minus the pie crust.

Enjoy your holiday everyone!!

Thursday, November 18, 2010

I'm SO confused.....

I want to first say that I like my daughter's teacher, I really do.  Despite my frustrations over the food allergy issues, I think she's a good teacher and means well.  That said, I'm so confused!! There is another class home visit ( field trip to another child's apartment) today and since I checked ahead about what would be served I decided not to go.  Before leaving school this morning I spoke with Alexa's teacher and said "I spoke with Caryn and she said if she served any food it would be something from Alexa's safe snack list.  Could you just double check the ingredients if it's something you don't recognize?"  Her response was "Sure, but we aren't going to do snacks at these home visits.  It's just too busy and there isn't time.  The kids don't usually have a morning snack anyway so I think we should just stick to the no food rule." umm Okay....GREAT!!! That's what I wanted all along! So, why in the world did she allow yesterday's family to serve crepes? Isn't that just a tad confusing to the other parents?  I mean, I'm easily confused but I think this would confuse anyone-right? Why is one family being allowed to make crepes with the kids and another is told "no food"? Doesn't she realize that there are other families who may be offended by this?  I understand the family is French and crepes are part of their family thing but isn't the Italian family going to be annoyed they can't make meatballs? Or the Asian family upset because they can't make sushi?
Here's my advice to Alexa's teacher.  Make a policy, notify the parents, AND STICK TO IT!!! You'll save yourself a lot of headaches and no one will blog about your silly flip flop policies!!

Monday, November 15, 2010

Short lived victory....

Well...so much for "small victories" (see Sunday, November 7th post below).  There are 2 more home visits (field trips to children's homes) scheduled this week.  Well SURPRISE!! This morning the teacher informs me they are serving crepes at the upcoming home visit.  GREAT! Thanks! Wonderful! Fantastic and aaaarrgghgggh! Why? why? why is this necessary?  I was so happy, so excited, so relieved to have food be a non-issue at these school events and now I have to find sitter for each event, contact hosting parents, research safe recipes, make safe food, AND attend every visit.  I wish I could understand WHY they made this choice.  What's to keep all the other parents from now including food during their visit?  The teacher literally dropped this bomb on me and walked out of the classroom.  I was left standing there with my mouth open and a very confused and upset look on my face.  Looks like I will be making egg free crepes on Tuesday night.  Wonder what they are serving on Thursday? With my luck it will be some exotic, hard to make dish that I'll have pull out of my hat at the last minute.  grrrrr..... Damn food allergies!!

Thursday, November 11, 2010

Alexa's 1st Chinese Food-Chicken Fried Rice.

Alexa was finally able try her first Chinese food.  A while ago (read months*cringe*) Cybele Pascal posted a request for allergy friendly recipe challenges for her blog on Wholeliving.com.  I put in a request for anything Chinese since Alexa had been asking lately.  The challenge for the recipe was that it could not contain Peanuts, tree nuts, egg, soy, sesame (no longer an issue), or legumes.  Cybele posted a delicious recipe of Chicken Fried Rice and I was excited to make it.  Unfortunately, I never got around to making it because I could not easily locate the Kombu seaweed called for in the mock soy sauce.  There is a Japanese store on the Upper East side but I kept forgetting to stop in when I was in the area.  Eventually, I ordered it from Amazon.com while I was ordering some other allergy friendly items.  Anyway, last night was my first attempt at the recipe and I thought it went pretty well.  Alexa ate 2 bowls and Jason gave it a thumbs up.  Nick didn't eat much of it but that's typical for him.  I've attached a link to the original recipe and pictures of the dish (warning, mine is not nearly as pretty!).  I did not have onions (thought I bought them but, well, I guess not!) and I was unexpectedly out of carrots (darn those late night snacks!) but regardless of the omissions it was a hit!   I used onion salt in place of the onions and since it was not salty enough for our tastes at the end I added a dash of Lawry's Seasoned Salt when I served it.  Also, I no longer own a wok so I made mine in a skillet.  Enjoy the photos and if you try it -let me and Cybele know!
 Just the veggies
 Veggies mixed with the Fried Rice and chicken
 The verdict from Alexa
Nick's verdict-but honestly he hadn't tried it yet!

Here's the link to the original recipe
http://wholelivingdaily.wholeliving.com/2010/05/gluten-free-chicken-fried-rice-food-allergy-recipe-challenge-3.html

Sunday, November 7, 2010

A small victory!

On Friday morning, Alexa's teacher approached me and said "I wanted you to know we have decided not to serve snacks/food during our home visits.  It is too difficult to control and the children did not eat lunch because they had just eaten at the visit.  It's easier if we just focus on other projects."  You can imagine my relief and joy!  I will still be attending the home visit tomorrow since I was already scheduled but it is wonderful to know I don't need to stress about food being served, safe snacks being packed and others looking out for her.  Plus, now I won't have to tag along at 26 visits!! *big smile!*

Thursday, November 4, 2010

Worry Wart Wednesday

I've dubbed yesterday Worry Wart Wednesday since both children decided to challenge my sanity and parenting skills with health related and scary issues.  Nick had tummy trouble and Alexa had an allergy scare.  Alexa's school is doing "home visits" as a part of their Family study.  They visit the homes (apartments) of almost every child in the class.  The first visit was yesterday.  I was a bit concerned about not being there but a friend and mother with a peanut allergic child was attending so I felt she would be safe.  I thought I had prepared well for it.  The hosting mother and I spoke about what would be served.  I provided her with a box of CherryBrook Kitchen cake mix for safe cupcakes and we discussed her plans to serve mini hot dogs in crescent rolls.  The hot dogs have soy in them so I planned to pack a safe substitute.  I also spoke with her teacher and informed her that Alexa could eat the "yellow" cupcakes and I would provide a option for the hot dogs.  I baked some crescent rolls to pack in her backpack.  I discussed the plan with Alexa, "yes, you can eat the yellow cupcakes and frosting, but NO you can NOT eat the hot dogs".   Everyone was on the same page-or so I thought!  Bright and early yesterday morning, Nicholas woke up screaming in pain from a stomach ache.  He's been having problems so we were quite worried something serious was wrong and I rushed him off to the ER.  This meant Jason had to drop Alexa at school.  In my worry and concern for Nicholas, I completely forgot about packing Alexa's lunch, the home visit, the crescent rolls and explaining it all to Jason.  Luckily, Alexa remember and reminded him and he called my cellphone.  I asked him to pack the crescent rolls in her backpack and told him her lunch was in the fridge and assumed all was well.  Nicholas was thankfully okay.  Just very constipated and in pain.  We fixed him up and arrived home around 9:30 a.m.  By 10:00 a.m. my focus shifted back to Alexa and I began to worry.  Did her teacher know she should take her backpack with Epi Pens and snack in it??  Did the teacher and host remember she should not eat the hot dogs?  My worry continued so I emailed and texted my friend reminding her of the backpack and asking her to please be sure Alexa did not eat the hot dogs.  She did not get the messages.  At 12:30 I received a call from her telling me Alexa had, in fact, eaten the hot dogs.  My heart sank, but I knew that worst case scenario she would throw up and feel awful but be okay, for that I was grateful.  We are fortunate soy is one of her lesser allergens.  Then I started thinking, "Who was watching her at the table?" "Who put the hot dogs in front of her?" "What if the food had contained nuts?"  We could have been faced with a very different and very dangerous outcome!!   Amazingly, she didn't even get sick!  However, the realization that the food could have made her sick (or caused anaphylactic shock) is frightening and stressful.  I thought I had done my homework, covered my bases and prepped her-she should have been safe.  The lesson I learned?  You can never been too prepared and sometimes accidents happen.  I have tried so hard to ensure Alexa knows how to protect herself and stay safe.  I was surprised she ate the food without asking first (she's well versed in this and always very cautious) but you can't trust a 5 year old when they are excited and involved in a group event.  Our solution? I will attend all future home visits to ensure Alexa's safety.  It will also remove stress and worry from the hosts and the teacher so they can focus on the 27 other kids in attendance.  I'm relieved Worry Wart Wednesday is over and happy to move on to Thankful Thursday!! I can live without another day like yesterday!

Tuesday, October 26, 2010

Quick Allergy Friendly Dinner-Rack of Lamb with Ratatoille style zucchini

My version of a simple, easy, delish dinner:  Roast Rack of Lamb with Ratatouille style zucchini.
Ingredients:
1 Rack (7-8 ribs) lamb-Frenched.
Salt
Pepper
Olive oil (2-4 Tbs)
3 medium zucchini's
1 can Stewed tomatoes
Shredded Italian Cheese (of your choice or Italian blend)
3 tsp Grey Poupon or similar Dijon Mustard

Preparation:
Lamb:
Preheat the oven to 450 degrees
liberally salt & pepper the lamb rack on both sides
place 2 tbs of olive oil in an oven proof pan and heat until just hot.  Add lamb rack and sear all sides to a nice golden brown.  When all sides are browned place the pan with the lamb into the oven and cook lamb an additional 12-15 minutes or to your desired doneness. (you can use a meat thermometer if you prefer).  Take lamb out of oven and let rest on cutting board for 5-8 minutes before cutting into chops.

Zucchini:
place 2 tbs of olive oil in pan.  cut zucchini into 1/2 inch (or thinner) rounds.  Place zucchini in pan and saute for 5-10 minutes.  When zucchini begins to soften add 1 can stewed tomatoes (I used Del Monte), stir, cover and cook until zucchini is soft but not falling apart. (about 5 more minutes).

Presentation:
Place 1-2 chops on each plate.  Mound a spoonful of zucchini next to the chops and top the veggies with a sprinkle of the italian cheese.  Place 1 tsp of Grey Poupon next to chops for dipping.  Serve and enjoy!

Monday, October 25, 2010

Divvies, Dylan's Candy Bar and FAI put on a GREAT event!

I simply MUST take a moment to thank Divvies, Dylan's Candy Bar  and the Food Allergy Initiative(FAI) for an amazing Halloween event this past Saturday.  We arrived at Dylan's Candy Bar and were greeted by a very nice woman (didn't get her name) who asked us our name and then reviewed Alexa's allergies against the ingredients list for each item at the event.  I was thrilled to find that Alexa could eat everything at the event!!  Also each item was clearly marked with a card containing the ingredients.   Alexa participated in the "guess the flavor" Jelly Bean contest,  decorated and ATE a Divvies Cupcake and made a Halloween craft with Jelly Beans.  All the candy was allergy friendly and there were even cookies that were safe for her! I can not tell you how fabulous it was to watch my little girl safely and happily enjoy a Halloween event at a CANDY STORE where not once did I have to say "sorry honey, but...".  I truly had tears in my eyes watching her and choked up while thanking Lori Sandler, the author of The Divvies Bakery Cookbook and founder of the Divvies products for such a fabulous party.  If you are not familiar with Divvies-you should be...the food is delicious and their new products include Jelly Beans, Jelly Stars, Cupcakes, Chocolate chips, cookies and Carmel Popcorn.  They are a BIG hit in our house! I'm so happy to see that they are now have a larger selection of cookies with out soy flour in them!  I use to avoid them for this reason but now we can enjoy, enjoy, enjoy!
Our daughter finally had the opportunity to attend a Halloween Event in "the land of Yes!" as Lori would say.  Thank you! Thank you! Thank you!

The smiles I saw from the parents and children on Saturday will warm my heart for weeks to come.

Tuesday, October 19, 2010

Thanks for your support

I need to take a moment to thank anyone who has taken the time to read my blog and/or post comments.  I just realized today that I've received comments and I did not see them so I did not respond.  If you took time to post a comment and I did not respond, my apologies and THANK YOU for reading about our life with food allergies.  To the Mom who posted to me "anonymous" about her struggles with food allergies and asthma, thank you for reading and please know that I would have responded if I had known!  I hear your stress, anxiety, and concern and want you to know I'm there for you.  It gets better, it gets easier and some how, despite the challenges, we manage.  If you post again, I promise I will respond!

Please feel free to share my blog with any friends or family who may also be living the allergy life.  It's so helpful to hear from you and to have support.  Thank you.

Monday, October 18, 2010

Our 1st Food Challenge and success!!

Today was Alexa's first official "in office" food challenge.  We were challenging sesame since her numbers were low and she had never been exposed (that we are aware of anyway).  I brought along things to do since we knew we would be there for 3 hours but they had a special food challenge room with books, toys, games and a TV!  For the challenge itself, we brought Tahini (pure sesame seeds) and chocolate pudding to mix it into.  We arrived at 8:30 a.m.  They weighed her (in case they needed to give her meds), examined her lungs, took her blood pressure and pulse and then gave her the first dose.  She received 1/4 tsp in pudding.  She liked it and said it tasted like Sunbutter.  They waited 10 minutes then checked her lungs and skin and gave her the next dose.  They continued to do this until a full 2 tablespoons of sesame had been eaten.  I'm fairly sure that was the most chocolate pudding she has EVER eaten!  After the last dose they had us wait 2 hours and then did a final lung and skin check and since everything was clear we were free to go!  I will say that the first dose was very stressful, since I knew what could happen, but overall it was a very pleasant experience and I'm pretty certain this was the first time in a long time Alexa has had an undistracted Mom all to herself for 3 hours! We even played Monopoly the first time-which was pretty fun. 

I'm SO thankful that she passed the test and extremely thankful that we did not need to give her any Epinephrine.  So now we can eliminate sesame from her list of allergens! Thank you GOD and thank you to the nurses and Dr. Kim at the Jaffee Food Allergy Institute @ Mt. Sinai Hospital! 

Sunday, October 3, 2010

Team Alexa's 1st FAAN walk for Food Allergies

We participated in our first FAAN (Food Allergy & Anaphylaxis Network) walk for Food Allergies yesterday in New Rochelle, NY.   The location was Glen Island Park and it was really beautiful.  We were right on the water and we were fortunate to have a sunny comfortable day.   The walk was just the right length for the kids (just under 2 miles) and there were vendors, bouncy houses, music and a fire truck the kids could climb in.  I think all in all it was a great experience.  I will definitely go again next year.  Alexa seemed to enjoy it, I later heard her telling her friends about it and saying "it was SO fun!".  Hopefully next year we'll be able to raise a little more money for the cause.  Thanks to all who supported Team Alexa!!  



Wednesday, September 29, 2010

Walk a Mile in my shoes....

WARNING ranting ahead! I need to start by saying,  if your child does not have a life threatening medical condition and you are NOT a Dr., please, plleeaase-keep your "advice" and helpful "comments" to yourself.  This morning I was given a lecture by a mother in Alexa's class.  I left the school wondering what makes some people think they can offer up unsolicited advice/comments on other people's lives when they have no idea of the realities they face every day.  This morning, I was speaking to a friend (who has a child in the same class) about Alexa's recent behavior at home.  She's been well behaved at school but at home she has been angry, unkind and down right nasty towards me and her baby brother.  As I was speaking with my friend, I said "She seems to be taking it out on me".  A woman behind me piped up and said "I wouldn't call it 'taking it out' on you, she's just exhausted and adjusting to kindergarten." ok, harmless enough and probably true.  She then went on about how I need to provide Alexa with a safe outlet to vent her feelings and gave specific ideas.  I wanted to ask her if she was a psychologist but instead I nodded, smiled and thanked her for her advice.  Then I said,  "I've been wondering if she's feeling anxious about being in a school where they serve peanut butter.  This is her first time dealing with it and I'm wondering if that may have something to do with it."  She immediately said "Whatever anxiety she's experience is coming from you and it's being transferred to her." WOW!  Now, I'm not saying this woman is wrong.  Actually, she probably has a valid point.  I do need to be more careful about showing my anxiety to Alexa but what bothers me most about her comment is that other parents often label parents of food allergic children as "anxious" or "overprotective".  I believe most parents of a child with a life threatening medical condition have some level of anxiety about it, whether it's food allergies, seizures, diabetes or some other condition.  It's only natural and frankly, it's to be expected!  I wish that parents would support each other more.  I little understanding and compassion can go a LONG way in this world!

Tuesday, September 28, 2010

Thought and feelings about this article?

This article makes me frustrated and concerned for the safety and emotional well being of my daughter.  It also makes me a little angry.  Waving a peanut butter granola bar at a child who is deathly allergic reminds me of a child waving a weapon at another child.  This type of bullying should be treated very seriously.  Alexa has been struggling with her emotions lately, now I'm wondering if being at a school where they serve peanut butter during lunch is causing her anxiety.  What are your thoughts? Comment below please!
http://www.cnn.com/2010/HEALTH/09/28/food.allergy.bullying/index.html?hpt=Sbin

Monday, September 27, 2010

I'm officially renaming today- "Allergy STRESS Monday".....

So it's Monday.  Enough said.  But it's also raining and my son is home sick from school.  My fabulous (and there's no sarcasm here) husband offered to drop Alexa off at school today.  This is normally VERY helpful. Today, however, is different.  Here's why, last Wed (when he picked her up from school) he forgot her lunch box.  It was left in the lunch bin in the back of the class because, as usual, my daughter forgot to get it.  This is the lunch box that has a big sign on it stating "I'm allergic-don't feed me".  We'll call this the "allergy lunchbox".  Since I didn't have her "allergy lunch box", I packed her lunch in a plain blue lunchbox and explained to hubby he should transfer today's lunch into the "allergy lunch box" and put the old lunch in the blue lunchbox for me to bring home when I picked her up.  Still with me?  Ok, so THEN I tell him he needs to stop at the nurse and drop off her asthma spacer (that tube like thingy they use to take asthma meds) in case Alexa needs medication during the day.  Since things seemed to be getting complicated and he was getting a bit wide eyed,  I wrote it all down for him.  All set! right? well of course not silly...it's Monday!

A few hours later, as I'm leaving the Dr.s office with my son, hubby calls and says "by the way, I couldn't find her old lunch bag so I hung her lunch in her cubby"  PANIC! yes PANIC!  Alexa's class eats at 11:30.  It was 11:25.  Since lunch bags go in a big bin in the back of the room her OLD lunch (with the half eaten food from WEDNESDAY) is in the bin and her new lunch is in her cubby.  I have NO idea if Alexa is going to figure this out on her own and alert the teacher or if she is going to sit down to lunch and say "I have no food".  When a child at school does not have lunch-they feed them from the hot lunch.  Alexa can not safely eat anything at school-so I had a moment of panic, thinking "are they going to figure this out?".   I immediately asked hubby to call the school and explain the situation to them since the kids were literally just sitting down to eat. ( I have to add thank God for cell phones!) By 11:45 a.m.  I had not heard if all was well.  I called hubby and he stated "I'm not sure if they will get it to her-I told the woman what happened and she said 'don't worry they'll feed her'  I told her Alexa can't eat at school due to her allergies and she said 'ok, I'll check' and hung up."  He sounded a bit panicked too.  So I called the school back.  It took 10 minutes to get a hold of someone but I finally got a call saying she did indeed have the correct lunch.  phew! Note to self and lesson learned-"do NOT forget the 'allergy lunchbox' at school!" or make a second or something....oy.

Ready for part 2?  The spacer/asthma medication he had to drop off to the nurse?  Apparently, on the 504 Form, the Dr. forgot to check what type of asthma medication Alexa is to receive.  So, even if Alexa needs asthma medication, the nurse can not give it to her.  The nurse faxed the form to the Dr. but thee is some kind of fax issue so as the day chugs on Alexa is still out of luck.  The nurse called me at 12:30 to see if I was in the school so I could just grab the form but I'm home with the sick one.  Stupid Mondays....that issue still is not resolved but hopefully the Dr. and nurse are working it out AND perhaps by some miracle Alexa will get through the day without needing additional medication.  Can I go back to bed now? This day has exhausted me and it's only 2 pm!

Friday, September 24, 2010

Relief and guilt over my "normal" child...

My 2 year old son, Nicholas has been blessed enough to escape the food allergies his sister has.  Why? No one knows.  As his Mom I am relieved but also I have tremendous guilt.  Guilt? Yes, guilt! Seeing him healthy makes me wonder if something I did during my daughter's pregnancy caused her condition.  Rationally, I know this is not true but as a Mom and the person who grew her inside me I'll always wonder if it was something I did or did not do.  My son just started preschool.  When I send him off to school, or off with another person, I don't have to remember his Epi Pens or pack him a lunch or snack.  I just kiss him, wish him well and send him on his way.  I feels strange, like I'm missing something or neglecting him somehow.  Does that sound strange?  Alexa has always required that extra attention:  Did I pack her Epi Pens? Does she have snack? Does she have lunch? Who's picking her up? Do they know how to use an Epi Pen. Do they know where we keep them? etc, etc.  Not so with Nick.  My husband dropped him off at school today.  There was no "don't forget his lunch", "do you have the Epi Pens?" "Remember to check snack" added on to his exit, just a kiss and hug goodbye.  It is a relief not to worry about my son but I actually feel guilty about it, as if somehow I'm cheating him.  Strange? Yes,  but it's honest.  I wonder if other allergy Mom's who have a "normal" child feel this way?

Thursday, September 23, 2010

Get to know your school nurse!

I stopped by the school nurse's office yesterday.  I thought it would be a quick hello and information exchange but she spent time talking with me, sharing information and specifically asked how I wanted Alexa's symptoms handled should she have a reaction at school.  I'm so glad that a casual "pop in" had such positive results!  I also got the inside scoop on the kindergartner who ate a peanut butter sandwich at lunch, forgetting he was allergic!  (my worst nightmare!)  It was reassuring to hear a first hand account of what transpired and how she handled it.  As a result, I feel more confident than I did a week ago.  My advice-get to know your nurse! She(or he) is going to be the one treating your child if a reaction occurs.  I'm happy to know that Alexa's nurse is caring, careful and thoughtful.  She aires on the side of caution and will not overlook potentially troubling symptoms.  She even confided in me that she lost a child who was 2 1/2 due to choking.  I was heartsick for her but I know that having lost her own child, she will treat ours with love, care and a watchful eye, for this I am grateful.

Friday, September 17, 2010

Almost through the 1st full week of lunch @ school!

TGIF! and I mean- THANK GOD! We made it through the first week of Alexa eating at a big new school where they serve peanut butter.  Our first time experiencing it and she did great-so I am relieved.  However, yesterday a Mom at school told me an other allergic child went in the food line and somehow ended up with a Peanut butter and Jelly sandwich. He took a bite, raised his hand and said "I forgot I'm allergic." Keep in mind -this is second hand and I was told this story in the hallway, in passing at pick up time, but according to her, EMS was called and luckily the child did not have a life threatening reaction.  This raises all kinds of questions for me but NO ONE else has mentioned it at school and Alexa was clueless (thank God-again!).   So I'm on the fence as to whether or not to even bring it up.  I'm reluctant to pass along information from another Mom (grapevine and all that) but curious to know what happened? How was the child? how did the school handle it? What did they learn from the experience? Anyone out there have any thoughts about this? Anyone think I should ask the school for more information?

Wednesday, September 15, 2010

SafetyTats-tattoos arrived-quick review.

We applied Alexa's Food Allergy SafetyTat last night.  My initial reaction is that they are brightly colored and stand out-Great!  I don't really understand why they are so shiny though and this  morning it looked a bit dried out and cracking.  Other play tattoos the kids have applied are more matte and have lasted weeks without looking dry-even with washing.  So-the jury is still out on this one.  I'm not sure yet if they are worth the money but I'll let you know in a few days.  Please feel free to comment or add feedback if you have used them with success.  Here are the photos:

Tuesday, September 14, 2010

First full day of Kindergarten with peanut butter served in the cafeteria!

I think the title of this post says it all! Yes, today was Alexa's first full day of kindergarten and that includes her eating lunch in the cafeteria which is shared by the entire school (up to 12th grade).  They serve peanut butter sandwiches to the kids who want them and the 1st graders eat before her class.  SO....the big questions that are probably on your mind...1) Was I nervous today? Yes!  2.) Am I still nervous? Well, lunch was over almost 2 hours ago-so that's a relief! 3.) How did I get through it? Preparation, communication, and a few prayers! After our incident last Wednesday (when Alexa was given an unapproved, but thankfully safe snack) I arrived today ready to educate, communicate, and partner with the school to ensure her safety.  I arrived early (before the classroom was opened) and brought a bag full of safe snacks, a list of safe snacks, and a big smile with a great attitude.  I greeted the teacher with a smile and was pleasantly surprised to see that she was also wanting to talk to me.  I explained what I had brought, we talked about how to handle snack,  I demonstrated how to use the Epi Pens (she seemed relieved that I took the time to do this!) and we agreed to make the room peanut free! yippee!  Alexa will still have to contend with peanut butter (and other allergens) in the cafeteria but at least the rest of her day should be somewhat safe!  I also introduced myself to the school nurse (again) and provided her with a zip lock bag with Epi Pens, our Allergy Action plan, and Alexa's photo.  I also introduced Alexa to Tory (the cafeteria supervisor) and the lunch lady (sorry-didn't get her name!).  I feel  confident that everyone who needs to know-has ben informed of her allergies.  One Mom also recommended that I place a notice on her lunch bag (GREAT IDEA!).   Last night I attached a note on the top which has her name, a "no peanuts" sign and a list of all her allergies.  If she doesn't stand out after that I'll be attaching a neon sign to her head!   Last but not least, I ordered some SafetyTats which she will wear for the first month or so of school.  If you have not heard of them check out their website (no I'm not affiliated in any way-just came across them and liked the idea) safetytat.com . They make temporary tattoos for various applications and labels as well.

I realize some allergy Mom's may not like the idea of placing a temporary tattoo on their child to draw attention to their allergies but it gives me comfort. having her allergies highlighted.  I don't feel the need to hide them or try to make her "blend in".   As she gets older, I'm SURE she'll tell me "Mooom, please everyone's looking!" Her new school is huge with hundreds of children and her little Medic Alert bracelet could easily be overlooked by a teacher, staff member, or volunteer who is watching her.  The tattoo stands out and will attract the attention of an adult who will then keep a better eye on her until they get to know her better.  Most likely I will only use these for the first month or so of school.  I will post a photo of her with her tattoo once they arrive (hopefully today!).  So, 15 minutes to go and so far so good! Let's hope we have a fun, productive, safe school year!!

Wednesday, September 8, 2010

1st day of Kindergarten with food allergies.


Today was Alexa's first day of Kindergarten. I packed her a lunch, brought her Epi-Pens, 504 plan, Allergy action plan, and Benadryl. She was so excited. It was a real pleasure to see her so happy. But I was filled with apprehension. I pulled the teacher aside (no small feat in room with 60 people!), introduced myself, explained that Alexa had multiple food allergies and showed her the Epi-Pens. The teacher barely glanced at the Allergy Action plan (which lists her allergies) and said "ok, good. Put it in her cubby". She then asked if I had talked to the parent coordinator. I explained that I had-and that I brought everything she requested and she said "ok, good. We'll post this on Monday." I asked if they would be eating in the classroom, since it was a half day, and she said "just snack". So of course, I checked the snack, approved it and told Alexa it was safe for her to eat. We were good to go and I was feeling confident! I gave her hugs and kisses and off I went until pick up time. I was relaxed and relieved. When I picked her up she was smiling and very happy. She had a great first morning and I was happy to head home knowing we had a great first day! As we walked to the subway I asked her, "What did you have for snack today? Pirate's Booty?" I fully expected her response to be "yep!" instead I heard, "No-they wouldn't let me eat it-it had soy oil in it-I had pretzels." I literally stopped in my tracks. I had NOT approved any pretzels. Or even glanced at any pretzels or seen them in the room. They could have had sesame seeds on them or been made with egg or on the same equipment as peanuts! UGH!! So I asked her again "really? pretzels? but honey, you can eat soy oil, that's ok for you and you eat Pirates Booty all the time. Why didn't you eat the Pirates Booty?" "oh" she said. "I thought they were the ones with soy." Immediately I began asking 50 questions, "ok-what kind of pretzels were they? What did they look like? Do you remember the name? Are you sure they were the same kind you eat at home? How do you know that?" Then I realized I might be freaking her out and said "Well-you seem ok-and feel fine so-we'll talk about it later and I'll talk to the teacher." After calming down and letting a little time pass, I talked to her about it again. It seems she became nervous that it may have been "veggie booty" (which contains soy) and NOT the regular Pirates Booty she eats at home so she decided not to eat it. Apparently the teachers showed her some pretzels and because they looked exactly like the ones I give her she assumed they were safe. Thank God they were. I can't begin to tell you how frustrating, upsetting and frightening this situation can be. I've since calmed down but now realize I will have to be much more vigilant and direct with the school. I hope that a good conversation on Monday and a supply of safe snacks will prevent this from happening again and I thank God my baby has a guardian angel on her shoulder and that she did not get sick today.

Pictures of her new placemats


Here's a photo of the placemats we made for her new school. Alexa will eat off of these at the cafeteria to be sure she does not encounter any of her allergens while eating.

Saturday, September 4, 2010

Kindergarten starts next week!

Alexa starts Kindergarten next week. We have the usual excitement and anxieties that all families have when their oldest child starts their first year of school, but we (or perhaps I should say "I") also have the dread that comes with sending our food allergic child to a school which is NOT nut "sensitive". At lunch, children in her class could be sitting next to her eating peanut butter, nuts, eggs, sesame, soy, chick peas and other things she is allergic to. While my husband does not seem the least bit phased by this (just my opinion) I waiver between excited, confident, trusting of the school and utter fear that no one will be looking out for my baby girl. I find this very frustrating since I've gained such confidence in the past couple of years- I have allowed her on play dates without my supervision, let her eat at a restaurant for the first time since she was 2 and added multiple new foods to her diet. But putting all my trust in a group of people I don't really know is terrifying. I am taking precautions. For example, I've educating Alexa on how to stay safe (we made a special place mat she will take with her to eat on and had many conversations about sharing food, drinks, etc.), I've communicated with her teachers, the parent liaison, the school nurse, and other parents, but I don't think I will ever feel 100% confident. I'd be satisfied with 90% confident. On the other hand, the current prevalence of food allergies in young children means other parents of food allergic children have paved the way for us- and for that I am extremely grateful. It means I do not need to educate the school or her teachers about the seriousness food allergies. I'll keep you updated on our journey and how she does. I will also post photos of the homemade placemat she will take to school with her. Feel free to use the idea and enjoy the last days of summer!!

Monday, March 29, 2010

Easter Prayers for the GOLDEN bunny!

Hippy Hop-pity Easters on it's waaay. In our house this means early on line shopping for safe Easter bunnies or late night candy making sessions trying to hide the chocolate creations from my daughter. This year we are going to be away during Easter. Since we are flying I figured packing the bunny would mean arriving to our destination with an unrecognizable brown lump in my suitcase. So I went online, ordered my bunnies early and had them shipped to my mom's house in Florida a full week before Easter. After a hardy pat on the back for a job well done-I was content to know that a cute little Nut Free, Egg Free chocolate bunny would be sitting my daughter's Easter Basket on Easter morning. wrong. A few days later I get this email from my Step Mom: "your shipment arrived. You did not get your bunnies. Instead you received a small package of fruit candy, a very small bag of jelly beans, and a package of chocolate eggs" My heart sank but I immediately contacted the company, thinking if they shipped it immediately I'd still have it for Easter. The company sends me an email stating "we're all out of those bunnies, can we send you this bunny instead?" NOPE! The replacement bunny's are made on the same equipment as egg products. So now we're 10 days from Easter and NO bunny for Alexa. I immediately started scouring the other allergy friendly sights for that ever elusive Nut Free, Egg Free Chocolate bunny. I felt like Elmer Fud chasing Bugs Bunny and kept humming, "get the wwaabit, get the wwaabbitt". After about 30 minutes of websites which said "sorry we're no longer taking Easter orders" BINGO! I find one. I order my cute little 4 oz bunny for $4.95 and click order...then...BAM! I see the total cost- $14.95!!! They charged me $10.00 for shipping a 4 oz bunny!!! WOW! So now I have 4 oz bunny worth $14.95 coming for Easter-I've nick named him "The GOLDEN Bunny". Outrageous I know, but her smile on Easter morning will be worth it right? Only problem...still no bunny and I can't get any confirmation from the company that it has even shipped! Sigh...I suspect that she'll go without a chocolate bunny this year. I feel like I failed her. Worst part, now Nick can't have his chocolate bunny either. What kind of evil Easter bunny would bring a chocolate bunny for Nick and blow her off? Ok-so let's all join together and say an Easter Prayer for the Golden Bunny and hope it arrives by Saturday!!!

Friday, March 5, 2010

Just par for the course

This morning I stayed in bed an extra 15 minutes-which meant I was almost 15 minutes late to drop Alexa off to school. Not a great way to start the day but I still remembered her lunch, the special blanket she wanted for nap, snack for the class, AND her show and tell item. I gathered up the kids and hustled off for the 10 minute walk to school. When I arrived at school I was greeted by her teacher who promptly said "I screwed up." I wasn't really paying attention because I was wrestling with Nicholas and reminding Alexa to change into her sneakers, hang up her coat, and put her lunch on the lunch cart. Her teacher repeats, "I'm sorry, I really messed up-I decided to make Mac and Cheese with the kids today and I forgot Alexa needs her own noodles." Now I'm paying full attention and immediately my "allergy" brain kicks in, "ok-what type of noodles are you using? Barilla-hmm-no not safe for her." Ok I can figure this out... "I'll run next door to the store and grab some safe noodles for her". Strike that idea-the teacher had already cooked the noodles and didn't have time to cook new ones for Alexa. Her teacher suggests, "what if we give her the sauce and let her dip crackers in it? It's not the same but maybe she won't feel left out?" okay-that might work but I'm pretty sure it won't. I know Alexa, and dipping crackers in cheese sauce while other kids eat noodles is not the same thing. So now I think, "Can I go home, boil up some noodles and make it back before they make the Mac & Cheese?" Probably not, they're doing it at 10am and it's now 9:15....then suddenly, voila! I remember I happen to have cooked bow tie pasta in the fridge at home! GREAT! I really don't want to walk all the way back to the apartment and come all the way back to school but I know I will if she wants me to. I decide to ask Alexa because sometimes she doesn't care or isn't interested in what they are making. "Alexa-Rebecca decided this morning that she'd like to make Mac and Cheese in class but she forgot safe noodles for you. Would you like to have a little sauce and dip crackers in it or do you want me to go home and get pasta for you?" She responds, "Mom-I'd like noodles, PPLLLEEESE can I have noodles?" Even though I'm tired, it's cold outside and it's a 10 minute walk each way-I can't say no. So-off I went to get her noodles. As inconvenient as it was, I'm grateful that the school tries to accommodate and include her. I'm also grateful that the school is close by because next year she may be at school that is not close by and if they forget to call me or do a last minute food project she'll be out of luck. Just an another average day for an Average Allergy Mom!!

Tuesday, March 2, 2010

Allergy Free Salad (nut free, egg free, soy free, wheat free, sesame free,)

Simple recipe for a simple quick lunch salad and so good for you. For dairy free-omit cheese, for fish free-omit tuna.

Ingredients:
1 package prewashed Mixed spring greens
3 oz chopped chicken, tuna, or lean cold cut such as turkey or ham
1/2 can of beets
sliced red pepper (or any other color you prefer)
1 oz crumbled goat cheese
splash olive oil & red wine vinegar

Fill bowl with greens, add next 5 ingredients, add splash of sea salt and enjoy!

Friday, February 26, 2010

Allergy Free Lemon-Piccata Chicken Thighs

Here's a really simple allergy free recipe that my husband and kids LOVE. I serve it with sauteed garlic spinach, asparagus, or butternut squash and rice.

Prep Time 5 minutes; Cook time: 45-50 minutes
Ingredients:
4-6 Chicken Thighs
1/2 cup olive oil
3 small scallions(sliced, white parts only)
Juice of 1 lemon
4 tbs capers
salt & pepper

Preheat the oven to 375 degrees. In a small bowl, combine oil, scallions, lemon, & capers. Arrange chicken thighs in roasting pan-skin side up. Lightly salt and pepper chicken. Pour marinade over chicken, then turn so the skin side is down. Roast in oven for 25 minutes basting once. Turn chicken over, baste, and continue cooking for another 20 minutes or until meat thermometer reads 170 degrees. If you like your skin crispy, turn oven on Broil and broil for 5-7 minutes.
Let chicken rest 5 minutes before serving. ENJOY!

Tuesday, February 23, 2010

Information on Cold Urticaria treatments

Here's an interesting information in the treatment of Cold Urticaria-which my 2 year old Nicholas had.
http://ow.ly/1p8FHk
http://ow.ly/1oXwtA

Saturday, February 20, 2010

Illness and the Food Allergic child

For most Moms it's nerve wracking enough when your child runs a high fever, has a bad cold, or is generally ill but for the mother of a food allergic child it is especially stressful. Alexa is recovering from pneumonia which started as a fever, coughing, and general malaise but progressed one day into vomiting. You're probably thinking, "yeah, sounds normal-what's the big deal?". Well, when you have a child with food anaphylaxis, vomiting can be a sign of a severe allergic reaction headed to anaphylaxis, so it is especially stressful when she starts to vomit within half an hour of eating and seems to gasp for breath in between heaves. In that moment you think, "is this just the illness or was it something she ate? What did I just feed her?" You have to consider whether or not to give her Benadryl, her Epi Pen, or just wait it out. It's all in your hands and your interpretation, so you just pray you make the right call. We've had several experiences where her vomiting was so severe and scary that I almost administered her Epi Pen. In that moment you do not want to make the wrong call. You don't want to miss a reaction and not give her the medicine, which can result in death, but you also do not want to "freak out" and stab her with a needle because you panicked. We have been fortunate enough to not need her Epi Pen in the past 3 years but I'm always on the fence in these moments. I just pray that if the moment ever comes when she does need her Epi Pen that I know what it looks like and make the right call. There are many days that I wish this was not my burden to carry but I am unbelievably thankful for my beautiful little girl.

Thursday, February 18, 2010

New town, new food allergy challenges.

We've been in NYC for over six months now but I continue to struggle with finding safe "basic" foods for my daughter. In our previous home I knew just where to go to find her rice milk, pasta, safe chocolate chips, cake mixes, special snacks, and even pizza delivery. When we moved to NYC I had to start over which caught me off guard. Most of her items were not readily available at the local grocery story and if they did carry something I needed it would cost twice as much. My in-laws actually drove to New Jersey to find her Rice Milk and bought a case of it which helped tremendously. Since my kids drink 1/2 a gallon a day-I really needed to find it close by and for a reasonable price, which, thankfully, I managed to do. However, I have to order her Enjoy Life chocolate chips and Cherry Brook Kitchen mixes on line and pay for shipping since I can't find them here. It took me several days, phone calls, and emails to find safe pastas that she could eat (my mother in law is Italian so this was a must). Now Alexa is asking for pizza delivery. I make safe pizza at home but she's wanting a pepperoni pizza delivered. She doesn't ask for special food items very often so when she does I try my best to accommodate her but this one is proving to be a challenge. We live on an island on the East River so our delivery options are limited. NYC pizza places will not deliver here. The local pizza place uses eggs in their crust so they're out and so far the other delivery places from Long Island City are unsafe for various reasons. I will continue to call around and search for that perfect pizza place, but it make me sad that a simple thing like take out pizza is such a challenge for a food allergic child.

Sunday, January 17, 2010

Thinking of Haiti

Like many of you, I can not stop thinking about the tragedy in Haiti. I am reading about all that they are facing and just breaks my heart. Unlike those living through it, or those who have family or friends there, I'm fortunate enough to be able to choose not to read about the destruction, grief and struggle if it becomes to painful or difficult. But today I had a thought that truly terrified me. What I were in a similar catastrophe with my food allergic child? My daughter has multiple severe food allergies and asthma. Would I have her Epi Pens, Bendryl or Albuterol to keep her safe? Probably not. What would I feed her? Her options are already limited and with access to food being a problem there's a real chance she would be in danger of starving or suffering a life threatening allergic reaction to the food we did find. If we got emergency rations-would they be a safe for her to eat?? It's overwhelming to contemplate. Unfortunately, if you're fleeing a collapsing building your unlikely to grab the Epi Pens, Benadryl or inhaler and advanced planning for this type of disaster may not help. I'd love to hear from parents of other food allergic children who have emergency plans in place. What would YOU do to plan for something like this? God bless those suffering and I pray that the aid coming into the country will reach those who need it. I pray that our family will never have to experience such fear, grief and suffering as that facing the Haitian people.

Friday, January 15, 2010

Another successful day

Yesterday Nicholas played outside on the playground for the first time in almost 6 weeks! It's was in the 40s but NO hives! I'm thrilled! He did get very red but did not get any hives and I think we may have turned a corner. Thank you God. He spent another 1/2 hour out today with no problems as well. Perhaps he will actually get to play outside during the winter like normal children. What a relief to see this pass and I hope it never comes back again!!

Tuesday, January 12, 2010

Cold Urticaria resolved!

Great news at the allergist today! Nick had another "ice cube" test (they hold an ice cube to his forearm for 5 minutes) and it was negative!! He got one tiny hive but it was gone in a couple minutes! The Dr. said we are very fortunate that it resolved so quickly as it usually lasts 6 -12 months. She said we still need to watch him when he's outdoors and keep him bundled and warm but that things look really good. It's so refreshing to leave an allergists office with a smile on my face! I hope that things continue this way and that Nick can now play outdoors on warmer days-either way I'll sleep easier tonight!!! Thank you God, the universe or whatever powers that be and are watching out for us!!

Saturday, January 9, 2010

Lexi Missed out again

There was another birthday celebrated at Alexa's preschool yesterday. As usual, I pulled out a cupcake for her to take to school for the celebration but in the crazy morning rush I packed her lunch but forgot the cupcake! Normally-I would have realized this when I arrived at the school and quickly correct my error, but yesterday my husband dropped her at school and the teachers did not remind him. The cupcake sat forgotten on the counter until later in the morning when I discovered it. I immediately started beating myself up for the error because it was now too late to bring it to her since they celebrate during morning snack. All I could think of was my poor child sitting there watching 14 kids eat some special treat while she had some boring snack from her safe snack stash. I'm blessed to have a child who does not cry or get upset when these things happen but I would give anything to spare her these moments. When I picked her up the teacher said "oh it was fine we all had goldfish and cheese sticks-so she wasn't left out" and I thought "Hooray! A Mom who didn't fuss with cake, cookies etc for a birthday!" WRONG! On the way home Alexa informed me that they had brownies-which she could not have. Now why in the world would the teacher leave this detail out?? So I asked Alexa ,"Really honey? But Rebecca said you had goldfish and cheese." Alexa said "Yes but they also had brownies-maybe Rebecca didn't realize" UGH! I'm amazed how great Alexa is about it-and of course I gave her the cupcake when we got home (which she lovingly shared with her brother) but these moments just highlight how challenging it can be to raise a child with multiple food allergies. I am thankful for the parents who reach out to me before the celebration so that I can make her something similar or make suggestions. Those moments are priceless and deeply appreciated. I wonder what next week will bring.....

Monday, January 4, 2010

Another cold day with fingers crossed

Have you ever experienced or heard of Cold Urticaria? My 2 year old son was recently diagnosed with this condition and living in a cold climate makes it a real challenge. Basically, he's allergic to the cold and develops hives on any part of his skin which is exposed. Sound bizarre? It did to my in-laws but my niece had this condition in her twenties so I was not confused when my young son started developing hives when exposed to the cold, but I was dismayed and saddened. When we were living in New Hampshire I could warm the car, transfer him in and run him from the car to the building or vice versa. However, we recently moved to NYC and getting my daughter to school each day requires a 10 minute walk in the cold each way and serious stress and concern for me. We've started him on Zyrtec each day in hopes that it will control his symptoms. It was frigid today and I was nervous that he would have a reaction but fortunately he still young enough to get bundled into a stroller for the walk and we were able to escape any problems to or from school. I'm very interested in hearing from anyone else who has experience with this condition as it seems very rare. We are hopeful that he will out grow it or that it will resolve as he grows but there is no way to know for sure. I had my hands full dealing with my daughter's multiple food allergies, environmental allergies and asthma but now I must also make room for daily care of my babies issues as well. If you have healthy children, kiss them, hug them and thank GOD for them!