Wednesday, September 30, 2015

Party Planning

The time is here - Peanut Party planning has now begun.  Yesterday Claire and I went to Dallas and increased to 6 peanuts twice a day.  The PA told us to plan for her "graduation" the first week of November.  We can get any and all Halloween candy and save it for after her graduation.  This is such a huge deal for us.  As I type I realize how stupid is sounds, but it's not.  Candy, desserts, snacks no longer have the power to kill Claire.  

We have said from the beginning of the journey that we would throw a Peanut Party after she graduates this program.  Planning is underway.  I have found the invitations, paper goods, menu, etc.  If you would like to be invited (and are not family - because you HAVE to be there) please message me your address.  

This is a time to celebrate!!!!  I am asked all the time if I can believe this.  On one hand - no.  This was the life God chose to give us, so this is the life we will live.  On the other hand - well yeah!  God works miracles all the stinking time.  His miracles sometimes involve us stepping out in faith.  Praise the Lord above that we did just that.  I have to give Adam the props for that.  I researched and called and read and asked questions, but it was him who said YES.  I don't think I was strong enough to actually pull that trigger.

Her personality has changed.  Those closest to her can see it.  She is becoming more brave, more sure.  Her social ability is getting some stronger.  She will always be her own little Punky Brewster, but she is opening up little by little.  Claire started gymnastics last month.  I don't look for her to go to the Olympics, but she is loving it.  This is one specific this she could NEVER do, the risk of cross contamination was too much.  She is playing with the sisters at the ball field while Cole is playing baseball - she used to be my second skin.  Her possibilities are now endless.

I feel like this has given her a new lease on life.  Please don't misunderstand me - this is not cancer that we beat, this does not compare to the families who are dealing with that.  This is our reality, it was life and death for our Claire.  

Claire and I will be on the road every Tuesday for the next 5 week (barring unforeseen circumstances). Please pray for safe travels - Dallas is nerve racking regardless of the time of day.  

I am so thankful for such an understanding and patient school administration and faculty.  They truly love and care for all the children there.  They take a personal interest, it doesn't end at 3 o'clock.  I am also thankful for a boss who only says, "be safe" when I tell him I'm going back to Dallas,  I am never made to feel guilty for not being in the office.  God has placed such supportive people in our path over the years.  

Please stay tuned for our fast approaching conclusion!!!!!!!!


Wednesday, August 19, 2015

Up to 3 peanuts

Tim, Britny, Claire and I went to Dallas yesterday for her increase.  It was our first trip during her 2nd grade year. If all goes as planned she will be a 3rd grader eating anything and everything!!!  It's really very exciting and very hard to wrap my head around.

She has had a barking seal-like cough when she doses and when she has played hard.  We left Dallas with a rx for an inhaler.  She will use the inhaler 3 times a day for the next week then as needed for intermittent asthma.  Claire is also now eating 3 peanuts twice a day.  For all you mathematicians out there - that's 6 peanuts everyday!!  All in all it was a great trip.  It was very easy, and Claire did her schoolwork on the road.

School started last week.  Cole is in 5th this year and Claire is in 2nd.  They both have fantastic teachers.  I can't begin to explain how wonderful it is to be able to relax when I drop them off in the morning.  I know that God is in control; He placed us at this school.  It's hard to believe this is Cole's last year in the nest, and I know Claire's time there will fly by just the same.

I am working on living in the now.  Not worrying too much about what's next, just enjoying everyday.  This is such a fun age, no more baby stuff.  They are actual real kids now.

Nothing more to report for now.  We head back next week - 7 more steps until her graduation!!


Tuesday, July 28, 2015

Better Late Than Never

First, let me start by apologizing for not keeping everyone in the loop.  Summer has been crazy busy, as I'm sure everyone's is.  Second, thank you all for your prayers.  Claire is now eating 2 peanuts twice a day. 

It is such a bizarre feeling to be weighing out peanuts, having them in our house, her breath smelling like peanuts.  This is one of those deals that I knew God could do, but I really didn't think we would get this far.  Oh ye of little faith!  God has not only gotten us this far, but I am watching Him change Claire.  Of course she is still fearful, but not to the degree it was.  We went to Splash Kingdom for a church event Sunday night.  She's never been because of the cross contamination aspect.  She swam and slid and just had fun like any and every 7 year old should.

The school year starts in about 15 minutes and the dread is no longer there.  Yes, we will still have emergency kits, plans in place and rules to follow.  But, her shear panic over what a friend may or may not have eaten for breakfast is gone.  This will be a year she will enjoy.

Claire starts 2nd grade and Cole begins 5th - I am speechless.  They will be upstairs together this for their last time until high school.  I'm sure I'm making a huge deal out of this and ya'll are all rolling your eyes - but I am struggling.  The next time they will be in the same school Cole will be a senior and Claire a freshman.  I may have to lay down!

It's so strange to be thinking this far ahead, but from the time she was 2 I have prayed for the rapture because I didn't know how we could deal with Claire going to school.  Now she is starting her third year at EG.  What an awesome God we serve. 

We leave for our family vacation Saturday for a week of just the 4 of us - this is a first.  We hope to increase Claire to 3 peanuts twice a day 8/10 (the Monday before school starts).  I'll keep you posted!

Monday, June 22, 2015

Still Going Strong

I know I haven't updated in a while, but we've been stuck on this dose for the last month.  Claire has had a few reactions, one severe.  The thought of increasing her any sooner was out of the question.  It's honestly a little frustrating (we are almost to a peanut) but her little body is just taking a little longer to acclimate to the changes.  We will continue to be patient, God is good.

Since we have been on the same dose for 4 weeks and were only sent home with 2 weeks worth of capsules, we had to have more shipped to us.  The compound pharmacy is in Frisco (no they will not do it at any of our local pharmacies).  The thought of driving 3 hours one way to pick up meds was not something I wanted to do.  Thankfully JaNae Wilson Carroll lives right there!  She was sweet enough to  pickup the capsules and overnight them to me.  This sounds small, but it was truly HUGE.  She has 2 small children, and was willing to load them up to help me out. So grateful!!!!

The package arrives early the next day - so happy to just have them appear on my doorstep.  I put them in my purse and we go to dinner at a seafood restaurant (because we can now!!!!! no more shellfish allergy!!!).  Afterwards Claire wants to stop at Nana's to have her hair trimmed a little shorter.  We stop and while Claire is getting her hair cut I decide to get her dose ready.  Keep in mind, this is the new shipment and I have not opened one yet.  I get her Hershey bar (don't judge) and open the capsule to poor it on there.  It's white, like white white.  It has always been peanut color.  Through the whole capsule process it has been the same color.  We all taste it and it's salt.  All you taste is grainy salt.  To say that I'm unhappy is an understatement.  I immediately call Dr Silvers and explain the situation.  He is more upset than I am believe it or not.  He has us go to Kroger to get PB2 (it's a powder peanut butter) to use as her dose until he can straighten it out.  Thankfully there was something to do, I was worried we were going to have a real setback.

I speak to the pharmacy Monday morning and she wants to know how I know the capsules aren't right.  "Because they taste like salt and are bleached white, what do you mean how do I know?"  She asks if I want her to make a new batch or just send more from the same batch.  Are you kidding me, Why oh why would you send me MORE of the wrong thing.  I feel like I'm going crazy at this point.  I "kindly" ask her to make a new batch and ship them to Dr Silvers.  She does and he calls the next day confirming that these were NOT correct.  Yay - I'm not stupid after all!!!  And I didn't overreact!!!  Small victory.

Several days later he calls back to say there actually is peanut flour in the capsules.  It's a different bleached formula that the pharmacy used this time.  The physicians were not aware of the change and were not at all happy about it.  If something that huge is going to change, they should be alerted to it.  This is truly life and death they are dealing with here.  It matters.  Needless to say I asked Dr Silvers if we could stay on the PB2 until our next increase, I still don't trust the other capsules.  So, here we sit at 250 mg (1/8 tsp).  We leave in the morning to increase to our last capsule (500mg), next stop....single peanut twice a day.

I don't think I'm ready for that.  The peanut is a big deal.  Everything else has been "medicine," but now it's for real deal peanut.  Craziness.  She is super excited about all the things she will be able to do; airplane, amusement parks,  sleep overs, etc.  I'm the one (Adam too) who is nervous and somewhat anxious about what is to come.  God has brought us farther than I thought possible.....we are almost there!  We just have to continue to trust.

Thank you again for all the prayers!

Friday, May 29, 2015

Are You Sitting Down?

I remember when Claire was first diagnosed with her food allergies and an EpiPen was thrown at us. At that moment I was thinking, "God can take this away."  I really believed it, I believed it could happen that second - if that's what He chose.  I told someone (can't remember who) that God can heal Claire.  Lovingly their response was, "One day, maybe one day."  NO - God can heal her now - right now.  I know I got defensive, shocking right?!  I have refused to accept Claire's diagnosis as "forever". 

Yesterday Claire and I headed off to Dallas, just the two of us.  We really had a great, fast trip there. Rewind: over the last several weeks God prompted me to ask about her shellfish allergy.  Really hasn't been brought up since being in Dallas.  So, I asked Dr Silvers and he agreed to retest her there at our next increase. Present Day: I whisper to the front desk that we need to have Claire tested for shellfish and to PLEASE keep it quiet.  Claire's anxiety when it comes to testing is pretty severe.  We go back to the exam room and her sweet nurse walks in with the shellfish paraphernalia.  Claire immediately begins to breathe heavy and tear up.  I assure her the best I can and snuggle her head, since the nurse needs her on her stomach to test.  She takes it like a champ and we wait.

I'm watching her like a hawk.  Her last skin test sent her into anaphylactic shock.  Nothing was happening though.  NOTHING.  You couldn't see the test area except it was wet from the allergen.  Zero swelling.   We wait the 20 minutes and the nurse comes in and cleans off her back and there are no hives.  She's never tested negative before.  My head was spinning.  Dr Silvers walks in and says, "well, looks like she grew out of her shellfish allergy.  You can do a food challenge at home when you're ready.  I don't foresee anything happening!"  What?  Let me get this straight, not only are we working to rid her of her life threatening peanut allergy, but now I am hearing that she has outgrown her life threatening shellfish allergy????  Too much to process.  God healed her.  Completely healed her, in His time.  Not mine. 

Claire takes her dose increase (250mg), we wait for 45 minutes and head out.  I am still in shock.  Part of me wants to send that stupid mama flowers that went to the school board and started all this crap.  If it were not for her, we wouldn't be anywhere near this.  The other part is still irritated that someone could be that dumb - so she's not getting flowers.  ha!! 

By the time school starts Claire will be eating several peanuts a day, twice a day.  That is, if all continues to go as planned.  This morning her throat was itching and her chest got really tight.  But, after lying down for a minute under the fan, it started getting better.  We will stay on this dose for 2 weeks before we increase to our last capsule!  The thought of her putting a peanut in her mouth makes me lose my breath.  But, the Lord has gotten us this far, I have no doubt He will get us to the finish line.  I don't know if everyone can understand what this means for her, for us.  Food will no longer be a threat to her life.  It's not that we can eat out more, but she can DO more.  She couldn't do gymnastics like she wants because her allergies.  The close setting and cross contamination made it impossible.  Her allergens were everywhere.  Sunday School was not an option for the same reason.  Sleep overs weren't even discussed.  A boy kissing her for the first time (in 10 years).  Her life will become limitless. 

One step closer to Claire's Peanut Party!!!  Please continue to pray, Claire is still have stomach problems with her doses as well.  She is such a strong little girl!!!  And, just let me say Cole is ecstatic about the shrimp entering back into our diets!

Thursday, May 14, 2015

Horse Pills

Yesterday Claire increased to 175 mg capsule twice a day.  This is a HUGE jump in amount.  She's handling it well so far, just minor stomach problems.  Adam was sweet enough to take her yesterday, but I hate not being there.  Hopefully I won't miss anymore. 

Back to the capsules - they are big.  Like that antibiotic you have to take with a sinus infection.  Thankfully she's not swallowing them, but she has to consume all of the powder that fits in those ginormous vehicles.  We have settled on rice crispy treats to get said powder down.  Hopefully we have this week, then 2 more powder increases.  Then it's peanut time.

I was talking to my nephew, Jonah, today about it.  He asked if I was scared about the first peanut, because he was nervous.  Of course I'm scared, I look to need heavy sedation during the process that day.  Not to mention that at any moment she could relapse.  But again, refer to my previous post, I HAVE to trust the Lord.  There's nothing else I can possibly do. 

We are already seeing the effects of the OIT, she is relaxing some.  Not to the point of talking to someone that talks to her, but even at home with the things she now sees as possibilities.  Truly miraculous.

Her biggest problem at school right now is that too many friends want to sit with her at her peanut table.  All of her friends seem to have embraced this really well too.  We are hoping to have her in full blown peanut mode by the time school starts.  That means BUYING peanuts.  Do you know that last time I bought peanut products?  Almost 6 years ago.  I can't even wrap my head around that part, have them in the pantry and not treating them like grenades.  It's not a big deal to so many - but it's huge for us.

As mentioned in my previous post, please keep my sweet friends in your prayers.  Heather is still working out details with her daddy's things.  Becky, Ally & Camryn are figuring out how to live without husband and dad.  So much sadness, but the strength they have shown is far beyond what I could have imagined.

Hope everyone has a great day - I'll update next week on the even BIGGER pills!

Monday, May 4, 2015

2nd Capsule Increase

Adam and I took Claire last Thursday for her second increase with capsules.  We are working through it, it's a pain in the butt to find things she will eat to transfer all this powder to her mouth.  Not much room for error.  But, we are making it happen.

I have had a hard time figuring out how to type this entry.  My friend Heather buried her daddy last week and I was so heartbroken for her.  We are too young to bury our parents.  The "mamas" took up money to help with food, and while that is still fresh tragedy strikes again.  Precious Becky Lary lost her husband, Richard last Saturday and she buried him Wednesday.  He was only 49.  For those of you that do not know, Mrs. Lary was Cole's first grade teacher. and she is a sweet sweet friend.  Her daughter (Camryn) was Claire's 5th grade buddy.  I can't in all honesty come on here and type about our Dallas Peanut adventures today.  My heart is so heavy for Becky, Ally & Camryn.  It's more than anyone can think of carrying. 

Richard was a type 1 diabetic like Adam is, so Becky and I have talked about that several times.  I have no clue if diabetes lead to his heart attack, God knows.  But, of course my mind immediately went to Adam when I heard.  "I can't lose him." is all I could think.  "God, please don't take him." is what I prayed.  I realized, after several sleepless nights that Becky "couldn't" lose Richard either.  This wasn't because she was "ready," but it was because God had other plans.  I can't lose sleep worrying if I have tomorrow or next week with my family.  Not everyone gets tomorrow. 

Since Claire's diagnosis I have understood that she was in God's hands.  The part that I have a hard time with is ME not being in control of it.  In my heart of hearts I would love to keep my family in a bubble.  Yes, I am controlling............I'm working on that. 

I have been asked hundreds of times how I deal with Claire's allergies.  I don't, God gives me what I need, when I need it.  And I know God has done the same for Heather losing her daddy and Becky and the girls losing a husband and daddy. 

Thinking of dealing with allergies in comparison to the loss they have experienced seems laughable!  My life is truly easy, and I am grateful.

Please pray for these families when God puts them on your heart.