Monday, May 11, 2020

Food Allergy Awareness Week


This week is Food Allergy Awareness Week so I thought I would do a quick recap and update on Ruthie, our little food allergy warrior.
For those of you who don't know our story Ruthie, our third child, was diagnosed at about 16mo with a peanut allergy. She had had a few mild reactions (hives and some slight facial swelling) to peanut butter right before her 15mo appointment so at that appointment we got a referral to see an allergist. When we went to the allergist I had him totally convinced it was just a skin reaction. She had severe eczema (most likely the reason she has her peanut allergy...treat that eczema early and aggressively friends!) and her skin was super sensitive to lots of things. He was ready to send us home with instructions to come back "sometime" to get skin tested for peanut. I pretty much begged him to do it that day because I already had childcare for my older kids. So they did the skin test, she had a pretty large reaction pretty quickly and we ended up leaving the office with lots of instructions for what to do in case of a reaction, an epi pen, and a prescription for a blood test. The allergist was pretty impressed with how large her reaction was. We had the blood test done and it was positive and we found out some months later that not only was it positive but they had done a peanut protein test and it showed that she was more likely to have an anaphylactic reaction. Well we had been nervous before but now we were terrified! We also knew that not only was Ruthie going to have a reaction if she ate peanuts but she was also contact allergic so she would react if she touched peanut.
I don't think I can ever describe what it feels like to know that your child could stop breathing if they put the wrong thing in their mouth or you forget to read a label just once. Every meal was scary. Every trip out of the house involved watching not just what our kids were doing and eating but watching what everyone around us was eating as well. Ruthie's allergy affected not just her and Paul and me but our other kids as well. The big girls were fiercely
protective of her and could often spot someone eating peanut butter faster than I could. For years we walked around with what felt like a big rock sitting on our chests making it hard to take a deep breath. Praying that she would outgrow her allergy.
And then we got our miracle. She didn't outgrow her allergy but somehow (I can't really remember how) I learned about Oral Immunotherapy (OIT). The first time I read about it there were only a few places in the US doing trials. I thought it would be something she could maybe do many years down the road. But I kept my eyes and ears open, waiting. Then I stumbled across private practice OIT. Drs who weren't part of trials that were doing OIT on their own. They were using very well developed protocols. There were so many success stories. I found a community of parents who had searched for a treatment, who had traveled hundreds and thousands of miles for the hope offered by OIT and who had found freedom from the restrictions of food allergies. I started looking around and there were doctors in Atlanta doing it. But Atlanta is over 3 hours each way. But it was a possibility. Then there was a doctor in Salisbury, NC doing it. Only 2 hours each way (AND you don't have to drive through Atlanta traffic!) and we have family in the area so we would always have a place to stay if we needed to.
We went for a consult with our OIT doctor in October of 2017, did some more labs in the spring of 2018, and started OIT on August 29, 2018. The week before and the 2-3 weeks after were absolutely terrifying. We were constantly on edge watching for a reaction. We went to Salisbury every other week for 11 months. It was a lot of driving but it was pretty easy driving and we just got used to it. Once we reached 12 peanuts for 2 weeks Ruthie did a 24peanut challenge in the office on July 29, 2019. Our child who had started having signs of being airbone allergic to peanuts right before starting OIT ate TWENTY FOUR peanuts with NO reaction at all. It was amazing. And terrifying to watch her eat all that. And then we were sent home with instructions to eat 8 peanuts every day and come back for a follow up in a year.
Her shirt says "Be Fearless" and that was our goal with OIT! (She's also fearless on a bike...she may have taken the message a little too close to heart!)

The freedom that has come from OIT is wonderful. Less than a month after graduating from OIT we sent Ruthie off to kindergarten. I had been dreading the first day of kindergarten for YEARS. I was terrified that they wouldn't be as diligent as we were and I was worried about the social isolation that often comes with food allergies. I was worried that if she did have a reaction they wouldn't catch it fast enough. But her first day of kindergarten was so different from what I had envisioned over those many years. I dropped her off in her classroom (with her fabulous teacher who had been given a crash course in OIT) and walked away confident that my girl was safe.
Over the course of the last year OIT has been come just a part of our everyday routine. Ruthie eats 8 peanuts every morning and then has a 2 hour "rest period" where she can't do things like PE or recess that would elevate her heart rate. She does most of her rest period at school and it's been easy breezy. Her teacher is wonderful and Ruthie is her own biggest advocate. I cried the first time she came home from school and told me they had cookies and her face lit up when she told me she was able to have one. That was something she wouldn't have been able to do before OIT (almost all baked goods are cross contaminated with peanut). We are also allowed to skip a dose or two every week if we need to. The flexibility that we have with dosing really allows us to control the allergy...it doesn't control us. It means that if field day (which wasn't an issue this year...sigh) is in the morning we just skip her dose that day and she can get out and run around with everyone else. We didn't want to trade one thing that socially isolates (food allergies) for a treatment that also isolates. Ruthie is also allowed to freely eat peanuts however if she does eat them she has to have a 2 hour rest period afterwards so she doesn't eat them often but every now and then she will. She got to try her first boiled peanut this year and deemed them delicious and ate a whole bunch of them! I am so proud of how she remembers to ask if her rest period is over before she goes and runs around. I think she vaguely remembers all the restrictions she used to have but she has mostly forgotten and for that I am grateful. The first few weeks of school I would get a report on all the food in the classroom/lunch table every day but by Christmas break I no longer heard anything about food. When she was debating about getting school lunch for the first time her worry wasn't about what if there were peanuts in the food but it was what if she couldn't get her milk carton open. We lived many years in fear and did a lot of educating her about asking one of us before she ate anything and teaching her VERY early to say "I am allergic to peanuts" so to know that now food can be enjoyable and not a source of fear is wonderful.
We are so thankful for everyone that supported us along our journey and we are especially thankful for Dr. Williams, our OIT allergist. He was there every single step of the way during our OIT journey, even when we had an issue on Christmas morning. He is still only a phone call away whenever we need him (that is ONE phone call my friends...not calling and waiting for a call back...one phone call directly to him...it's unheard of and amazing and gave me an incredible amount of reassurance when we were starting out).

OIT isn't for everyone but for our family it was an answer to prayers. It was a little different than what we had been praying for but it was the perfect answer! My hope now is that our story can give hope to others who are living with the fear that comes with food allergies.

Friday, February 21, 2020

Father/Daughter Dance


Tonight was the Family Dance at school. Our crew still calls it the Father/Daughter dance because that's who goes from our house! This was Ruthie's first dance and she was so excited!







They met up with Evelyn and her dad at Olive Garden and then headed to the dance.


Paul said they had lots of fun. And true to form Ruthie spent most of the time dragging around various little boys from her class...she enjoys having someone she can boss around. Lol.
With one of our favorites, Mr. Dooley!



How adorable is this! Also, pretty sure Ruthie is going to give us a run for our money.






While they were at the dance JP and I went to Chick fil A for a mother/son date.




Sunday, January 5, 2020

Raddish Kids


Emmie let JP get in on the fun.


This year for Christmas my parents gave Emmie a subscription to Raddish Kids. I had never heard of it but my mom heard about it from a friend. Raddish Kids is a subscription cooking box for kids. Each month Emmie gets a box with 3 recipes, a shopping list, an activity, a patch for her apron (which comes with the first box), and a cooking utensil (Emmie got a cookie cuter and an icing decorator in the first kit and nice tongs in this month's kit). Emmie's first box was holiday themed and had holiday recipes from different countries or cultures: gingerbread cookies, mini tamale pies, and potato latkes. Each recipe card has the ingredients on it, a list of supplies you need, instructions (with pictures), and some kind of little tidbit...it might be a skill (like oven safety) or information about the food (the tamale pies talked about how you make actual tamales). The recipe cards are laminated and are on a good cardstock. My parents got Emmie a notebook to keep all her recipes in.
mini tamale pies...these were sooo good!


Potato latkes...ours prob should have been thinner but they tasted delicious!


This picture and the one below are cookies that Emmie decorated using Royal Icing she made. This was her first time EVER decorating gingerbread cookies and using Royal Icing. I thought she did a really great job!


Top 3 are Ruthie's and bottom 2 are JP's. They felt so grown up getting to decorate. Ellie didn't want to decorate any...but she was happy to be a taste tester!

Emmie had the best time making all the recipes and we loved everything she made so she loved that too! She also shared some cookies with our neighbors and friends so they think the box is great! If you have a kid who loves to cook I highly recommend this box!
After fixing all the recipes she earned her patch!

Emmie has been anxiously awaiting her January box. It came this weekend and it has a Swedish theme...Swedish meatballs, Nordic cinnamon buns, and a Swedish smorgasbord…yum!!


Thursday, January 2, 2020

Christmas

We have had such a wonderful time celebrating Christmas and getting to spend time with family and friends.
We kicked off the holiday season with Emmie's dance studio in the Christmas Parade. Emmie LOVES doing this! The other kids and Paul stayed home and watched it on TV while I took Emmie. This year I let her walk by herself and I sat in the stands with some friends and watched which was nice.

We didn't realize we were going to lunch afterwards but after the parade Emmie, Evelyn and Emma informed us we were going to lunch at Olive Garden! We did have fun with the big girls!
I love these sweet friends so much!
Our local Chick-fil-A did a dinner with a craft, storytime and Santa Cow so we went to that. Ruthie and JP were not so sure about Santa Cow but overall we had a great time!
About a week before Christmas we headed up to Greenville to do Christmas at my parent's house with my brother and sister-in-law and my adorable neice who were visiting from Mississippi. We went to a train museum and saw Santa, the kids spent lots of time playing together, and we also opened some presents!
K was not so sure about that Santa guy!






JP played with this little train almost the entire time we were there!


These two were so cute together. Emmie loves younger children and so she "babysat" K while the adults were in the other room. 


These two are going to be trouble together as they grow up! They are so funny!


Counsin pajamas!

Uncle Ben snuggles


Uncle Ben and Aunt Ruth are GREAT at coming up with unique presents (not some sarcasm here). This year they gave each child $25 in pennies which is bad enough but then they arranged the pennies in designs on a box and stuck them down with packing tape. For the record...$25 x 4 children is 10,000 pennies. Funny Ben and Ruth. Funny. (PS. I'm so glad they have a child now. Payback is going to be fun!)


On Emmie's birthday we had a special visitor come to our house. Emmie has been asking for an Elf for years and she finally got one. His name is Patrick and as much as I resisted getting one I did love how excited the kids would get every morning as they searched for Patrick.


JP had his Christmas program at preschool. He had been talking for weeks about how excited he was to be on "stage" and he did such a great job!


We had class Christmas parties at school. I was in charge of Ellie's party so we went to hers and then popped in to see Emmie and Ruthie. Poor JP was worn out and he slept through the entire party in the corner of Ellie's classroom!





On the 23rd we had Christmas with the Edwards crew at our house. I majorly failed in the picture taking department but I did snag a few! We opened presents, hung out, and ate dinner.


JP couldn't WAIT to paint this little car from GiGi and PaPa
Uncle Blake and Aunt Emily gave the kids each an Old Navy gift card and I took the kids to spend all their gift cards the other day. JP used his Old Navy gift card to get these slippers and they are awesome.
 
On Christmas Eve we FINALLY had time to make our Gingerbread Houses. The kids look forward to this every year.


Ellie and Emmie

JP and Ruthie

In the afternoon we went to church for the Christmas Eves service at church and met my parents there. It was the Lesson and Carols service which I always love! After the service we came home, ate pizza for dinner and settled in to watch The Star Movie and drink hot chocolate and eat all the Christmas goodies (Ellie's favorite part!). 

After the movie they headed to bed and Santa came!
They were so excited when they woke up in the morning (and so was Franklin...he LOVES getting presents, probably more than any of the rest of us!)






This is the cat purse Ellie got. She absolutely loves it and has carried it everywhere!
After we checked out what Santa brought we had breakfast and then opened presents! I think everyone was quite pleased with all that they received!

The girls got tickets to see Wicked with me! They were so surprised. JP got a ticket to Disney on Ice and a day with Paul. 


The Christmas that every pre-teen girl asked for a water bottle for Christmas. Emmie was so excited to get a hydroflask. She is obsessed with having all the VSCO girl things.
Finally a bike of his own!

A Christmas miracle...Franklin snuggling with Grandaddy!

The kids spent the afternoon playing with their new toys and my mom fixed us a delicious lunch! My parents headed back to Greenville after lunch. 
Christmas night we had a fire pit with our neighbors. We do this often but normally after the kids are in bed. Since it was Christmas we let the kids stay up and roast some marshmallows. They had a great time!


Ellie and our neighbor Kurt

Ellie got this cup for Christmas. It is normally solid black and says "I solemnly swear I am up to no good". If you run it under hot water though a Marauder's Map appears. We discovered it also appears if you have your cup out at the fire pit! My friend Sarah made it...check out her page!


JP, as you saw in an earlier picture, got a new hat for Christmas. It came with matching gloves. Funny boy wore them to bed Christmas night!

On the day after Christmas, my dad called me first thing in the morning. He had left his wallet at our house so my parents were headed back to Columbia to get it. It was a gorgeous day and we didn't have any plans so we decided to meet them at the zoo! It was a perfect day for the zoo and we loved our "bonus" day with grandparents! We spent a few hours at the zoo and then had lunch at CFA before my parents headed back to Greenville.





Paul and I were kind enough to give Gran and Grandaddy our wristbands so that they could squeeze into the train while we watched. haha!





For those who saw my FB post about the big present for JP that he was so mad I wouldn't let him open before Christmas...this is what was inside: A Paw Patrol suitcase. He was so excited!


We are now recovering from the month of December and have had a lovely time of having no plans since Christmas! We have done some game playing, lay around, and we got to spend an evening with some sweet friends visiting from the west coast!
The whole group minus baby C who was being snuggled by someone else.

Look how these girls have grown! The bottom picture is 2013. Top is Ellie, MRH, Emmie. Bottom is Emmie, MRH, Ellie.