Saturday, July 28, 2012

Excuses and Details

It's almost time to go back for our final challenge, and I haven't even posted the details of our last.  What's been keeping me busy??  It's summer, the kids are out of school (that's reason enough), but I also buy and resell children's items on eBay.  We've been in this house less than a year so there's lots of DIY projects (I'm now addicted to Pinterest), and my garden is in full production.  Over this last spring and summer, my garden has gone from this:


To this:

To that:

And "that" has taken a ton of time. I've made zucchini bread, muffins and cookies, canned pickles, dried and frozen tomatoes, tried plenty of new recipes, and still have a fridge full of fruits and vegetables. But enough about what's been keeping me busy.

The food challenge...

It was our first time going to UNC Chapel Hill.  Wow, it's a huge hospital system.


The Food Allergy Study Center is tucked away in a medical office building across from the hospital.  We barely found it.  We happened upon the sign and realized we had arrived at our destination.


The nurses immediately put numbing cream on her arms for the IV and started the skin prick test.  I was somewhat surprised that after not having noteworthy skin reactions at our last test (a year ago), that she had fairly large whelps.  They didn't itch as bad though.  In the past, we've had to fan Abigail's back while we waited the 15 minutes.  This time, she didn't complain at all.  She said they itched, but were okay.  Might just be maturity, and there was no room for speculation.

They inserted her IV, and didn't waste any time getting started with the doses.


Abigail chose to have her flour mixed with applesauce for one challenge and chocolate pudding for the other.  She got the applesauce blend first.  She commented early on that it tasted good.  I knew then that it wasn't the peanut flour, but didn't say anything.  We were pleasantly surprised to find that each challenge would be done with just 6 doses.  It just meant that that little cup shown in the picture above would soon turn into a larger bowl.  There was a waiting period between each dose, and they listened to her chest and checked her skin in various places before giving her the next dose.

We finished the first challenge by 11:30 and then had to wait an hour before starting the second.  We had internet access, so Abigail spent her day on my laptop.  With headphones on, she more or less tuned out the whole process.

She didn't say anything, but I knew she didn't like the chocolate pudding flour mix.  By the third dose, it was apparent that she was going to struggle to finish it.  The peanut flour (no doubting now) was thick and chunky, and the chocolate pudding was too sweet for an anxious stomach.  She was eating chips and drinking lots of water between each bite.  Luckily, there was a jar of applesauce in the fridge and Plan B was immediately implemented.  We weren't going to fail this challenge because of some chocolate pudding.  She took Dose 4 with the applesauce and was able to eat it all without issue.  Did the same for Dose 5.  By this time, she was doing some sniffing and sneezing.  They were monitoring her, and she could still breathe in a deep breath in both nostrils so onto the final dose.  She ate it all.  We now had to hang out for 2 hours and see what happened.  She got to open the sealed envelope to reveal her dosing order.  No surprise that the peanut flour was second.


She continued to do some sneezing and sniffing.  Her stomach was cramping a bit.  We walked around, went outside for a change of scenery, and her symptoms never worsened.  For the books, it was a pass!  She ate the equivalent of 16 and 2/3rds peanuts.  She wasn't without symptoms.  The nasal congestion did subside by the time we were heading home around 3:30.  The stomachache and cramping lasted all afternoon, and she went to bed very tired and still complaining of stomach pain.  I'm sure it had to do with eating all of that oat and peanut flour, but also with being very anxious, not eating a good breakfast (too anxious to eat more than a bowl of cereal), and having minimal lunch at the clinic.  But, she passed!!!  If a runny nose and a stomachache is all she'll have to deal with in the future after eating that many peanuts...well, we can live with that!

We're just a little over a week away from going back again.  We left without drops.  She's had no peanut protein since that challenge.  I've been thinking of ways to ease that stomachache...a bigger breakfast, cinnamon applesauce for the entire challenge, etc.  I can't control her anxious stomach.  She's even more nervous about this challenge because of that last stomachache.   If she passes this next challenge, they're going to have a "peanut party" and all of us will eat peanut butter together.  She'll need to eat 2 tablespoons.  I've got to bring food that will make that task easier.  She's thinking we top it with mini marshmallows, chocolate chips and Rice Krispy cereal.  That makes my stomach hurt just thinking about eating that.

I'm really praying that she does the peanut flour first at the next challenge.  I'm concerned about her being able to eat both the equivalent of 16 plus peanuts and 2 tablespoons of peanut butter.  If there is a longer break in between, it might be possible.  Also, I wish I could figure out a way to ease her anxiety going into the challenge.  That would take away a great deal of the stomachache concerns.

Regardless, I'm still amazed at how far we've come in the last three years, and how truly blessed we are.

Thursday, July 12, 2012

Haircut & Drops

I know I still need to post the details of Abigail's challenge, but I didn't want two important events to pass by without sharing.  Monday morning before leaving to go out of town, Abigail had 8 inches cut from her hair to use in making real hair wigs for cancer patients.  It wasn't her first time donating hair to Pantene Beautiful Lengths, but still no easier than the last.  It was a lot of hair, and she'd been growing it for the last 2 years. 


The shorter length looks super cute on her, but the new haircut along with her new glasses makes her look so much older.  Where did my little girl go?


The second noteworthy event was that Monday night was potentially her last time ever doing the peanut protein drops.  I couldn't let that event pass by without a comment and a picture.


She hasn't done drops since Monday night.  It feels weird for her to not be doing them.  We started the peanut clinical trial in May of 2009.  That's 1000 plus days of doing drops!  That's a really long time.

Tuesday, July 10, 2012

She Did It!!

The equivalent of 16 and 2/3rd's peanuts, and she ate it all!  We're so excited!  The challenge was a success.  I'll post details and pictures tomorrow.  I'm too tired right now, but did want to let everyone know that it's over, we're back at my parents and ready for a relaxing evening.

Thanks for your continued prayers and support.

Melanie

Monday, July 9, 2012

Tomorrow

Tomorrow is the big day!  It's food challenge time.  Time to see if Abigail's body is ready to stop the peanut protein drops and start getting the real thing.

We're heading out after lunch today to go to my parent's house which is just 30 minutes from Chapel Hill.  Given that Abigail and I need to be at the hospital tomorrow at 8:00 am, their house is very conveniently located.  It's also nice that they can keep my 5 year old.  The day is going to be long enough as is.

The challenge is blinded and Abigail will have to consume both peanut flour and oat flour.  She'll know quickly what she's eating.  It's pretty hard to disguise the taste of peanut flour.  We're praying that the lab sends the peanut flour first.  There's an hour between challenges usually coinciding with lunch time.  If she has the peanut flour first thing in the morning, we can leave as soon as she finishes the oat challenge in the afternoon, around 3:30.  If she gets the oat flour first, then we have to wait two hours for evaluation after she finishes the peanut challenge in the afternoon meaning we're there till at least 5:30.

As soon as we get there tomorrow, they'll put numbing cream on Abigail's arm so they can insert an IV.  After the IV is inserted and all safety precautions are in place, they'll begin giving her applesauce mixed with doses of flour at timed intervals working up to the highest amount.  A nice perk is that our doctor from earlier visits to Duke plus the two nurses that have been there from the very beginning will be at UNC to oversee every step of the challenge. So, with lot's of familiar faces and a big bag of activities, hopefully it will be a fairly easy day (if one can refer to this process as easy). During the day, they'll also draw blood for labs and do some tree nut skin test.  She's tested negative to tree nuts in the past on her blood test, but given that she's never consumed raw nuts, she also needs to be skin tested.  They'll test for just 2 to 3 tree nut at this visit and do 2 to 3 more at our next visits.

And, what happens after tomorrow?  If it's a success, she'll stop the drops, stay on her restricted peanut-free diet, and then head back to UNC for a second food challenge in August.  That one will be a repeat of tomorrow except at the end, if she passes, she'll have to consume the equivalent of 2 tablespoons of peanut butter.   If tomorrow Abigail doesn't make it past all doses of peanut flour (the equivalent of 16 to 17 peanuts)....well, we'll address that then.

As for today, we're asking for prayers for a safe trip, peace for Abigail during the challenge (she's super nervous) and that God continue blessing this trial, not just for Abigail and our family, but for the many children and families whose lives can be changed as an outcome of this journey.

I'll keep you posted.  Thanks for all of your continued support!