Wednesday, August 29, 2018

OIT

**This post has a LOT of information in it. If you just want cute pictures of Roo you can go ahead and scroll to the end ;) **
Today we started peanut OIT with Ruthie. Oral immunotherapy, in a nutshell (pun intended), is like allergy shots but for food allergies. And instead of getting a shot you take a small amount of your allergen by mouth.
Nobody in Columbia offers OIT so we are going to an allergist, Dr. Williams, in North Carolina. His office is about 2 hours from our house and it's straight up the interstate so it's not a bad drive at all.

So how does OIT work? Different allergists have different protocols. To get to our "graduation" goal I think there are 31 dose increases. On the first day you dose every 15 min until you get to dose #10 or have a reaction. Each dose is repeated once. After that you go home taking your last dose once a day every day for 2 weeks with a mandatory 2 hour rest period after each dose. After 2 weeks you go back to the office and they go up one dose and they watch you for a little bit to make sure you don't react and then, as long as you don't react, you go home on that dose every day for 2 weeks. That one updose every 2 weeks cycle is repeated until you reach the end! The end goal is 12 peanuts. After 2 weeks of that you are challenged with 24 peanuts and you officially "graduate" if you pass 24 peanuts!

What does graduation mean? Graduation means that you move on to the maintenance phase. Graduation means that you can "freely" eat peanuts. I put it in quotation marks because if you do eat peanuts you still have to observe the 2 hour rest period afterwards. Graduation means that you still take a dose of peanuts every day, observing a 2hour rest period afterwards. Ruthie will take this dose of peanuts (our doctor does 8 peanuts) every day for the rest of her life. This is because OIT does not "cure" a food allergy but it desensitizes the patient. So in order for the body to remain desensitized you have to ingest your allergen daily. There are patients who after years of maintenance have been able to only dose a few times a week and take a lower daily dose.

Who can do OIT? Anyone! I've heard stories of people in their 60s successfully completing OIT and I know of people who start it with children as young as 1. They are finding that generally younger kids do really well. How young a doctor will start depends on the doctor's comfort level. Dr. Williams won't start a child until they are 3 years old. Also, they do OIT for LOTS of food allergies! I know Dr. Williams does peanut and I think milk and tree nut as well and I'm not sure about any other allergens. Most doctors start with peanut (because the most research has been done with peanut OIT) and then add on other allergens from there.  I've heard of people who have done OIT for eggs also and even shellfish! You can also do OIT for multiple allergens! Some doctors will do 2 allergens together and some will only do them one at a time. Some people have really high blood levels and some have really low blood levels...success does not seem to be dependent on your starting labs.

Why OIT? So why did we choose OIT? Why not just avoid peanuts forever? Because it's not that simple. Peanuts are hidden in lots of things (how many of you reading this know that Lance uses peanut flour in ALL of their sandwich crackers so even the cheese crackers have peanut in them?). Ruthie has a contact allergy so if she touches peanut she will break out in hives. Because for over a year she has introduced herself to people by saying "my name is Ruthie and I'm allergic to peanuts". Because not everyone is going to look out for our child with the vigilance that we do. Because we want to have a Halloween where Ruthie doesn't say "trick or treat" and then immediately say "does your candy have peanuts in it because I'm allergic". Because I already have anxiety about her going to kindergarten with a peanut allergy and trusting a teacher with 20 other kids to watch to catch that Ruthie is having a reaction and get her epi in her before it's too late. Because we want to be able to ENJOY a football game or baseball game with Ruthie instead of constantly worrying about if the people around us are eating boiled peanuts. Because I dropped her off for the first day of zoo camp this year, where everyone brings their own snack and their are no allergen restrictions, and thought I was going to throw up because I was so nervous.  Because our 4 1/2 year old already has anxiety about her peanut allergy and about having a reaction...and that's with her unable to remember having a reaction as her last one was at 14months.

So how did today go? It was GREAT! We went up to NC last night and stayed with Paul's cousin Mark and his wife Kelly. They are so nice to let us come spend the night (we also stayed there last year when we had our consult) and Kelly made Ruthie cinnamon rolls this morning which absolutely thrilled Ruthie! This morning we headed to the doctor's office and yes Paul and I were SO nervous. For 3 1/2 years we have been hypervigilant about avoiding peanuts and now we're allowing a doctor to give her small amounts of peanut.
When we arrived at the office they called us right back. They have a special room for OIT patients which has a TV, video games, playdoh, games, coloring stuff, etc. The doctor came in and meet with us and explained how the day would go and answered our questions. Then he checked out Ruthie to make sure she didn't have any rashes, wheezing, etc. and then we were set to go! The doctor came in the room with the nurse for the first dose and then after that he popped in a few times throughout the day to check on us. The nurse came in every 15 minutes with a new dose (right now her dose is carefully measured peanut flour mixed with Kool-Aid). She was super punctual so I'm pretty sure that today her job was just to take care of Ruthie! Dr. Williams also explained that he stays in the building the whole time we are there and they schedule fewer patients on days when someone is starting OIT. Every time I'm around Dr. Williams I am so impressed with how much he cares about his patients and how dedicated he is to OIT. The nurse that came in and gave Ruthie her dose was always so relaxed and calm and that definitely helped me not feel so nervous!
Ruthie made it all the way through dose 10 with no reaction. We were so thrilled! This means we have 21 updoses left! This means that sometime in February Ruthie will eat her first peanut and in around a year we will be in maintenance. Now of course this is if everything goes smoothly with no reactions. We're taking this one day at a time, one updose at a time. Generally if you have a reaction they go back one step for about 2 weeks and then try to updose again.
We left the office after about 5 1/2 hours and headed back to Columbia. Ruthie was worn out by the time we left!
Ready to start!

She got lots of Daddy snuggle time!

They gave us a paper to track her doses. Perfect for my Type A self!
Headed home!


What do I want to remember from today? I want to remember a conversation I had with Ruthie. She complained at one point that she was having to take a lot of "medicine" today. I reminded her because we were doing this so hopefully next year at Halloween she wouldn't have to worry about what candy she was getting and that hopefully sometime next year we could go eat at an ice cream store. Her little eyes lit up and she said "so I won't have to worry about people touching me anymore?". It made me tear up that, for my 4 year old, even more than ice cream stores and Reece's cups (granted she's never eaten a Reece's cup or been to an ice cream store like Marble Slab) the most exciting thing about this process is  not having to worry about someone touching her after they have eaten. She is excited about being able to sit down to eat in a public place and not having to worry about what the other kids are eating. This is why we have chosen OIT.

Thursday, August 23, 2018

Summerville Trip

Last week we had a wedding shower to go to in Summerville so we went down a few days early to hang out with GiGi and PaPa!
JP loves playing with all the boy toys!

Friday morning Gin-g and I took the kids to  the beach! They all love the beach but JP in particular had a fabulous time...he was definitely in his happy place!




Friday night we went to CFA for dinner (where JP got his much coveted ice cream cone) and then we went to the Berkley game to cheer on PaPa's team! We had a great time but unfortunately had to leave early because of lightening. We got to see a few Berkley touchdowns though while we were there and the kiddos loved celebrating! Blake and Emily arrived not  long after us and Paul almost made it to the game...he was a few minutes away when we left.



Berkley shirts that Aunt Emily made. 

JP didn't want his picture taken!

After a few minutes this little guy said he wanted to go on the field and play football!


Emmie and Uncle Blake
Saturday Paul and I took the kids to the pool in the morning and Gin-g came and met us.


After lunch Emmie, Gin-g and I headed to the outlets to do some shopping. I had so much fun shopping with my big girl!
That evening Gin-g and Fred treated Paul, Blake, Emily and I to dinner out AND they watched the kids! We had a lovely evening and enjoyed our adult time.

Sunday we went to a shower for a childhood friend of Paul and Blake. It was really nice to see people we don't see very often. We brought the kids over for a little bit at the end and  they had a great time. Mrs. Joy, one of Gin-g's friends, brought Emmie some flowers to arrange and it was the first thing Emmie did when we got home!

We had a wonderful trip...it was a great way to finish off our summer!

Wednesday, August 22, 2018

1st Day of School!



Today was our first day back at school. This year Emmie is in 3rd grade and Ellie in second.
Big girls off to 2nd and 3rd grade!


First day of school 2017...look how much they've changed!
Paul w as leaving at the same time as us this morning. I asked JP if he wanted to get in the picture with the girls and he said no, he wanted to take a picture with Daddy. :)


The little kiddos and  I walked the big girls into school this morning.
Ellie and Mrs. Estes


Emmie and Mrs. West
They gave their teachers these bracelets with the school colors on them.

After we dropped the big girls off JP and Ruthie and I headed to meet some moms  at Famous Toastery for a back to school breakfast. It was lots of fun!

Everyone had a great day back!
Ellie was nervous last night (and poor thing said she kept waking up at night worried about going back to school) but once she walked in the classroom she was just fine. When I picked her up from school all she could talk about was that her teacher did the Floss...she got major cool points!
Emmie loved her teacher and was ready to tell me all about third grade procedures!

After school pic! Ainsley, Emmie, Evelyn, and Ellie

Funny story...Emmie and Evelyn both got new backpacks over the summer and we realized this afternoon they had picked the same pattern!

For dinner I took the kiddos out to a special back to school dinner at San Jose. They were thrilled!



Friday, August 17, 2018

Back to School Night

Last night was Meet the Teacher night at school. We are SO excited about our awesome teachers and we are ready for a great school year!
Ready for school!


Our annual Evelyn and Emmie "beginning of school" picture! 

Ellie is going into 2nd grade. She has Mrs.Estes who is the teacher Emmie had the last two years. We absolutely love her and are SO excited that Ellie finally gets her turn in Mrs. Estes's class! Mrs. Estes checked with me to make sure we ok having her for a third year in a row...umm... YES! And we'd take her for a fourth and fifth year too! Ellie's best friend Chloe is also in her class again this year (third year in a row) and she is thrilled about that.
Ellie is beyond excited about this school year! 

We love this lady so much!

Emmie is going into 3rd grade. She has Mrs. West and is SO excited that she got her first choice for third grade teacher. Ruthie danced with Mrs. West's daughter last year so we got to know her well during many afternoons in the dance studio and we just love her! With the information we gathered from her EEG this summer along with the results from her neuropsych testing we are so glad that Emmie will have a teacher that we already know and that already knows her. I know Emmie is going to have a fabulous year! She was a bit sad that her buddy Evelyn is in a different class this year...they've been in the same class since 4k. BUT they will be together all day one day a week for ALERT. Plus Emmie is with Anna, one of her other good friends, for the first time so she was very excited about that.
Emmie drew Mrs. West and her daughter some pictures. It's going to be a great year with this wonderful teacher!

Mrs. Lytle, Emmie's ALERT teacher

We loved getting to see all our friends and teachers...so many hugs! They had to see all their SAIIL teachers (and meet the new ones who they all agreed seemed very nice) and stop by and hug their past teachers. I am so thankful for all of these teachers who love our babies so well! We start school on Wednesday and the kids can not wait!

JP and Evelyn's dad hung out while the girls were being crazy!

Tuesday, August 14, 2018

Zoo Trip

I took the kids to the zoo a few weeks ago. They got an extra special treat because their preschool teacher, Mrs. Terri, came along with us! Mrs. Terri has had all the girls in the 3yr old class and she is so special to us. :) We had so much fun and they loved showing Mrs. Terri all their favorite things at the zoo. 
random Blowfish sighting outside the zoo!


 Our zoo currently has baby lions, a baby giraffe and a baby gorilla. Our goal was to see them all!
We went by the lion exhibit about 3 or 4 times before we were finally able to catch a glimpse of the lion cubs.  They were so cute and I managed to snap a quick pic before it disappeared back inside.

The baby giraffe was adorable! Such long legs and a little unsure about what to do with them!

Baby gorilla with it's mama. It was PACKED with everyone trying to see the baby.


Mrs. Terri feeding the giraffe!

Saturday, August 11, 2018

Dance Camp


Emmie did dance camp at our dance studio a few weeks ago and had a great time! She was SO excited and she loved having lots of her friends in the camp with her. Camp was 4 days for three hours each day and on the fourth day they gave a little performance. I was so impressed with all the things she had learned in those 4 days!
I took so long to post the videos because she had seizures in 2 of them. But I am so proud of her and of what she learned and she is proud of what she accomplished. I am proud that she doesn't get upset when she has seizures and all of a sudden isn't with the rest of the group and has no idea why. I'm also proud that she can recover so quickly and pick back up with the rest of the group. This girl's brain has to work overtime yet she loves every minute of it!

I was most impressed with her tap piece...it's been 2 years since she took a tap class and she did great! Also, that's her bestie Evelyn that has the solo at the beginning...she did fabulous!






Sweet dancers with Mrs. Cari...we LOVE her!