150mgs 1/2 of a peanut!

Brooke has up-dosed to 1/2 of a peanut, which is 150 mgs and did so almost as seamlessly as she has with her other up-dose appointments.  About 2 minutes after the nurse fed her the peanut flour, Brooke started to complain about a stinging/burning tongue.  I had her gulp down a cup of water and examined her tongue. There was never any swelling, and the stinging sensation went away as soon as she had finished the water.  Each day that we dose at home has gone very well.  She hasn't had a problem since.

We will begin flying again soon.  Southwest came out with some one-way sales, which ends up costing the same as driving and staying a night in a hotel... plus is WAY easier on us.  We are looking forward to what the next few months will bring.  If we stay on track, and Brooke can keep from getting sick, she is projected to be eating a whole peanut (300 mgms in peanut flour) by the end of January.

Home-schooling is going great. I truly believe that keeping her home this year was in her best interest.  She has only gotten sick once this fall.  Last year, she was sick so frequently that it ended up leading to 4 or 5 ear infections.  Her immune system seems to be getting so much stronger, an awesome side effect of desensitization in my opinion.  When her brother, father and I all came down with colds recently, she never caught it.  When she was ill with a fever last month, she bounced back in day.  All very uncharacteristic of her normal immune system behavior.  I couldn't be more elated!

We continue to feel blessed every day, that we are able to obtain this life saving therapy for Brooke.  Her legions of supporters, her heroes, have been helping us get through this through prayer, donations of items to sell and monetary donations.  We are so grateful for those that care so much about our little girl!

Brooke is just one of tens of thousands who suffers from life threatening food allergies. There are so many, many children who could and should be able to benefit from this therapy, but cannot for reasons of their own.  So, we feel very fortunate that Brooke is able to be just one of a few OIT patients that is on her way to a cure and a whole new life free from fear of peanuts.

125 mgms

She did it again! She up-dosed to 125mgs without so much as a hiccup.  To say that I am astonished, in awe, dumbfounded, or in utter amazement would be an understatement.  This treatment really works, and I am so very thankful that we have been able to do this for Brooke. We have several heroes in our life who have helped us along the way.  To all of them, I just want to say; thank you for giving my little girl a chance at a normal life.  Whether you have simply prayed for this to work, or whether you have donated your time to help me with a fundraiser, or whether you have donated financially... you all are our heroes.

Back to 75, then on to 100 mgms

Wow, has it really been a month since I have posted?  Time flies when you're trying to be supermom!  It's 5:45 in the morning, my day started about an hour ago.  I woke up early and couldn't get back to sleep as my mind was too busy spinning, thinking about all the things I need to get done today.  One of them was to update the blog... check!

B has been on 100mgms of peanut for the past week.  Next week she will up-dose to 125 mgms.  I miss the early days of dosing when the dose doubled each time... but at the same time, I know that we have to take it "low and slow" as the doctor puts it.  Even though I would like to move faster, we specifically picked our doctor with the "low and slow" protocol because we felt it would be safer for B, with less side effects.  So far, she has been doing great!  Each time we return to the office for an updose, the nurse asks B if she has had any itchy mouth, tummy aches, etc. and each time B looks at her like "no, why would I"... lol!

It still feels surreal, to think that B is eating actual peanut.  I have to pinch myself sometimes and my eyes well up with tears, not from the pain of just having pinched myself... but from the amazing journey that she is on.  I absolutely believe with all my heart that this is the road she was meant to go down.  I believe that God wanted this for her.  I know that some of my friends and family don't believe in God, but everything that has happened in our lives that has lead us up to this point is just beyond coincidental.

I've had people ask me, and honestly I have wondered myself, why would God give B a life threatening allergy to nuts?  I don't know that He causes things to happen, but rather allows them to happen.  There is so much awfulness in the world, peanut allergies being just one of them.  Why does B have this allergy?  No one in our family has any type of food allergy, there's no reason for her to have it.  Why did God allow this awful allergy? It makes our lives a thousand times harder than it has to be, and can take the life of our daughter in a split second.  A preacher and friend, Tim Brown (who's son nearly lost his life when a basketball size boulder was thrown from the top of Fall Creek Falls by teens, hit his 3 year old son in the head) once said that God allows things to happen because all things are meant to bring glory to Him.  I admit that it sounds pretty awful, and I don't fully understand that concept.  I don't understand how a child being molested or women being raped, or innocent people being murdered can ever glorify Him, but somehow it does.  It is all allowed, because certain circumstances bring people closer to God.  Certain circumstances bring non-believers to God.  Somehow, Brooke's life threatening allergy is bringing or is going to bring glory to God. Here is my take on it;

• Ever since Brooke was an itty bitty baby, she has not ever been able to be without me.  I tried to return to full time work after she was 6 weeks old, but soon found that I couldn't.  She would starve herself all day long, until I returned to nurse her.  We tried different bottles, different nipples, etc. to no avail.  She also would not sleep anywhere but in my arms.  I listened to the advice of others and tried everything to get her to sleep on her own, and she just never would.  I pretty much gave up my job at that point, and did so happily, to be a stay at home mom.  I was the breadwinner of the family at that point, so it didn't make much sense... but Scott and I both knew it was the right thing to do.  I only worked part time at night so that she would either be with me, or with her daddy.  So, the night back in 2007 that we found out about  B's life threatening peanut allergy, we were the ones to find her allergy... it wasn't found accidentally at some day care.  She went into anaphylaxis in my presence, ME, the best possible person to find out about it (aside from a Dr. or nurse), as I had had training on emergency medicine and knew exactly what was happening, how severe it was, and what treatment was needed.  I thank God every day that she was home with me when it happened, and not in a daycare, or church nursery, or even with just daddy. None of those people may have known what to do.  
• That night that she went into anaphylaxis, we just happened to have children's Benadryl to give her... which saved her life. We had the Benadryl because 6 months earlier... she had a full blown rash after eating eggs.  Had that not happened, we wouldn't have had the Benadryl, Brooke would have had to wait for EMT's to arrive... who knows what could have or might have happened?  I don't even want to think about it... but I thank God every day that she had that minor reaction to eggs (an allergy she has since outgrown) so that we had the Benadryl to immediately administer to her.
• Fast forward to 2011, when my husband was threatened with losing his job due to a mission change at the AF guard base where he worked.  I had to return to work, just in case he really did loose his job.  B was attending a peanut free private school kindergarten, and I was staying home with my son.  I asked for more hours at my job, but they didn't have any to give me.  I started a job search, and looked for more work for over a month.  Just when I was about to give up, an office called me with a full time offer. We enrolled my son at the same school B was going to, and I began working again.  My husband did end up loosing his job, but it didn't happen for several months.  In the meanwhile... my car kept breaking down and over heating and could not be fixed.  Scott had already replaced the engine once...  so we were ready to move on.  Because we had been earning a dual income for the past several months, we had saved enough money to put down a decent amount on a new car.  We traded in our piece of junk and bought a brand new car.  Even with the threat of loosing his job, we were confident in our ability to pay mortgage and new car payment with just my salary.  I thank God every day, that we now have a new, reliable car with which to drive to North Carolina every two weeks.
• Once the news came that Scott was definitely going to loose his job, he began looking for a new one.  We had no idea where he would find one, but an incredible opportunity came up for him.  Out of hundreds of applicants for this position, he was one of the few selected for interview.  Out of the few interviewed, he was the one who got the job!  I thank God every day for the opportunity He led Scott to.  Before this job opportunity, there was no way that we could have ever considered doing OIT peanut therapy for B.   It is a struggle now, but we are making it.  Which leads me to;
• All the help we have received from others.  Be it the friend who led me to look into OIT, or the friend I made who helped me think of ideas for fundraising, or be it the people who so graciously give items for a benefit garage sale, or be it those who have donated funds to us to help with the 25,000 we will need to spend on completing this 2 year journey... all of these people have been placed in our lives by God.  I don't think anything is accidental.  It all happens for a reason.  I thank God everyday for the friends we have met and the people He has placed in our lives who care more about helping Brooke than even some of her own family members.
• There are so many other examples of reasons I know God is leading us down this journey of healing for Brooke. It can't all just be coincidental.  I feel His love when I think about how we are spending 1,000.00+ a month for this treatment and wonder how it can be possible when we live from check to check.  I feel His grace whenever B up-doses and has absolutely no issues with taking her daily dose of her poison.  I thank God every day that that there is a treatment available, and that B is receiving it. Thank you to all of you who have loved my child enough to help, be it with prayers or donations of items or donations of money.  I thank God everyday for all of you.

75 mgms, Then back to 50 mgm

B successfully up dosed to 75 mgs a few weeks ago.  She had been on that dose at home for a few days... but then she became ill.  It happened on a Tuesday.  We began our homescchooling day as usual.  Around 9am she began to complain of a headache.  I wasn't sure if it was a big deal or not because sometimes she just doesn't want to do her work.  Then an hour later, she said she was freezing cold.  I felt her forehead and she felt fine.  I told her to go get a hoodie on, and to come back to class.  About 30 minutes later, she was laying on the couch and looking miserable.  Then she started to get feverish.  I took her temp, which was at 101.7 and called her OIT doctor.  He instructed us to skip dosing for the day, and to plan on coming back to NC within the next 2 days.

For the rest of that day, Brooke rested and I let the fever burn.  At 102.7 she was miserable, so I gave her a dose of Advil.  That night, she threw up in the middle of the night.  She threw up again the next morning... but sometime in the middle of the night, her fever had broken and thankfully, it never returned.  We let her sleep all morning on Wednesday, and when she finall woke up around noon, she was all smiles.  We put her in the car and made the 6.5 hour trek to NC.  Luckily she had no other issues and was on her way to feeling much better.

The next morning, we had an appointment with the doc.  He told us that because she had bounced back so quickly, that he would only need to down dose her to her previous dosage of 50mgs.  If she hadn't recovered quickly, she would have had to down dose to 25mgs and we would have lost a month of progress.

Needless to say, we are trying very hard to keep her healthy.  We're doing all we can just short of keeping her in a bubble.  She takes probiotics and multivitamins daily.  She sleeps with a heavy duty air purifier in her room.  We use xylitol nasal spray at the first hint of any respiratory distress.  We home school, we hand sanitize, we wash hand frequently... but sometimes all of that just isn't enough.  Sometimes she is just going to get sick and there's nothing we can do to prevent it.

50 Mgms

B has successfully completed her two weeks on 25mgs of peanut flour, and is now taking a daily dose of 50mgs. We had a little bit of a scare while B was on her 25 mgms dose.  On a Sunday morning, 4 days after starting her 25mgs dose, we were busy in the kitchen whipping up some chocolate chip pancakes.  B was at my side doing what she loves most... throwing the chocolate chips into the pancake batter.  It seems inevitable that a few of those chocolate chips almost always miss, and somehow land in her mouth.  We were using Hershey's chocolate chips.  The same brand of chocolate chips that we always use.  Normally we use the semi sweet variety, but this time I had purchased the milk chocolate.  I always buy Hershey's because there is no mention of any type of nuts in the ingredients list, and there is no mention of using shared equipment.  I've always felt safe using them.  This morning, however, I wondered about those chocolate chips... as my daughter ran to the bathroom and began throwing up.

She hadn't eaten or drank anything that morning except for about 5 of those chocolate chips, so I was sure that they were the cause of her vomiting.  It was very scary for both of us, as I remembered the recent story of 13 year old Natalie Giorgi 's death after biting into a peanut laced desert.  After she bit the treat, which contained her poison, she spit it out.  She felt fine for about 20 minutes, and the she began to vomit.  She had no other signs or symptoms that anything was wrong... until it was too late to save her.

The freshness of Natalie's tragedy was definitely on my mind, as I held my precious daughter's hair away from her mouth and rubbed her back while she threw up the 5 chocolate chips.  I told my husband to have the epi pen ready, and wondered if we should give it to her.  It is such a hard call to make, when you aren't sure that an allergen has been ingested, and you're wondering what is making her vomit.

It was a stark reminder that even though B is consuming a daily dose of carefully measured peanut powder,  that her little body cannot handle even an inkling more than her dose.  We still have to be extremely careful.  After the fact, I no longer think that the chocolate chips contained any nuts.  I called Hershey's bright and early the next morning, and grilled the customer service rep about the possibility of cross contamination.  She assured me that there are no products made with nuts in the facility where the chocolate chips are made. We monitored B for the rest of the day and she was fine.  At first, I wondered if she had caught an illness, but she never developed a fever or any other symptoms.  After vomiting, she was fine and has been fine ever since.  I still don't know what made her throw up.  I guess it was just some weird fluke... or maybe that her nervousness had finally hit bottom.  Maybe it was that she had too much sugar in her empty belly?  I may never know.  I'm just extremely thankful that nothing ever came of it.

B is now 2 days into her 50 mgs dose and she is doing great.  I continue to be amazed that she is actually eating and tolerating this tiny amount of peanut.  I am humbled that there are doctors out there who believe in this therapy enough to offer it in their private practices.  There are only about 15 of these doctors scattered across the United States, and I consider all of them to be heroes.  I am grateful that we are able to provide this therapy for our sweet girl.  At a cost of 1000.00 a month (500 for Dr fees and 500 for travel), I don't know how we are doing it, but somehow we are.  If you would like to help, we have a fundraiser set up in her name here:  B's fundraiser We thank you in advance for any help you may be able to provide.

I'd also like to share the link to Natalie Giorgi's Sunshine Foundation . Her family is dedicated to preserving Natalie's memory by increasing public awareness and education of life threatening food allergies, which will better protect and prevent unnecessary harm for all.

25 mgms

I felt like the luckiest girl in the world the day that Airtran came out with a 56.00 one way sale.  It meant that B and I could fly round-trip to Raleigh for the exact same price as driving round-trip would cost!  So, for this updose appointment we flew to Raleigh and back again on the same day.  I cannot describe in words, how much less stressful it was to fly.  The 6 hour drive to Raleigh (which usually ends up being 7, or 8, or even 9 hours when traffic gets bad) was only a little more than 1 hour in a plane!  It was awesome.

Brooke's up-dose appt to 25mgs went very smoothly.  I talked to the doctor about her recent feelings of needing to throw up.  We both agreed those sensations are probably due to nerves.  Things have been really hectic lately...so I can't blame her for being in a state of upset. Especially when she knows she is eating her allergen on a daily basis.  We are home now, doing the daily dose of 25mgs and getting ready to start our home-school year.  Things are going really good!

12 mgs

Brooke's up dose to 12 mgs of peanut flour went much smoother than her initial escalation day. She had no tummy pain, no throat pain, no problems whatsoever.  Dosing at home is going great too!  I am slowly adjusting her dosing time to the afternoon, because her next appointment will be later in the day, and dosing is supposed to be done around the same time every day.

We have more big news to share! We have finally made our decision and I am going to home school Brooke this year.  I have withdrawn both children from the public school, and I have sent in the letter of intent to the board of education.  It was a really hard decision, but in the end, we just couldn't ignore all the reasons in favor of home schooling.  I'm ready for an adventure!