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Baby Steps

imagesI need to take a deep breath…I also need to write and process another tough day, I am beyond exhausted from the battles today.

Today has been a long day, no major issues, thankfully, but sometimes the weariness from the constant fight is enough.

The first phone call of the day was with the CF team in regard to enzymes and the issues with her still malabsorbing.  They are still showing great resistance to upping her dose despite her issues.  (Because she has been on a high dose for the last four years, not to mention the high prevacid these could cause long term problems.)  So their recommendation was stay the course. =( And look for other issues aka allergies, or gi.  They also wanted a weight check (which consequently wasn’t good), when food that you work hard to put in doesn’t stay in…kinda hard to gain any ground.

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Allergy news.

Just riding out in the car to the appointment was pretty emotional for me.  I couldn’t help but wonder what my girl was thinking and how tired her little body is from these still small struggles along her life’s journey.  Looking in the rear view mirror a lump caught in my throat, seeing her sweet face and her precious little voice wonder about what to expect at “this” appointment.  Growing up I can hardly remember going to the doctor.  It was so infrequent and not a part of my childhood, that it didn’t matter in the least.  I couldn’t help but think of the countless appointments and numberless times she has been poked, and prodded in her short 9 years, and it caught me by surprise.  It caused a deep sadness in my spirit.  It hurts at times to know that I can not keep this sorrow from her, but merely walk this, sometimes, painful journey alongside her.  That thought alone nearly brought tears to my eyes.  I know lots of kids get allergy shots, and tests and there are so many that have so much more than we do, but she is MY GIRL!  My love! My precious baby, and I wish life was easier for her.  Lately it has felt like we are running from a attacker with everything that we have and we are all tired.  She is weary from the food battles, we are weary from the constant pressure of trying to keep her healthy.

Okay, sorry for my pity party, on to the appointment. =)

The nurse was wonderful.  The doctor was AMAZING!!  We have been to many, many allergist over our lifetime.  I am not a doctor, but have studied my child and reactions more than most people ever care to have to do.  Consequently, I am pretty picky about dr.’s and allergist in particular.   It’s such an inexact science.   So many variables, and pretty high stakes.  We have had doctors that were aloof, and arogant, and ones that discounted our signs and symptoms, and ones that were condescending, and ones who were too busy to really take any time or effort to think about our case.  So to find one that I really, really liked was a true blessing.  The first 5 minutes, he won me over.  Not only did he directly speak to Rachel, but he was interested in hearing her WHOLE story.   He also took into account the cf factor and all that entails.  I was thoroughly impressed!  Which I, ashamedly admit, is hard to when it comes to the medical field.  He offered hope, he offered understanding and he was kind and encouraging during the process.

We did the alley panel of about 10 foods and then the control and the negative. Rachel was scared and crying once she figured out and remembered what we were doing (couldn’t figure out if I should tell her first or just wait until I knew for sure how he did his testing.  It was an unhappy surprise for her, but better than worrying about it for days and hours before hand, I think.).  The pokes were quick and she did great once they were over.  We were a bit disappointed to see the egg pop up.  It was the only one out of the list that were tried.  It wasn’t huge, but it was definitely there.  The nurse came in to read the numbers and report to the doctor.  He came in with a smile and said that he was VERY, VERY hopeful and encouraged.  The peanut did not show up, nor did the any of the other nuts.  He also thought we had a good chance at going for being able to add the cooked egg.

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In some research there has been evidence that an egg allergic person can often tolerate a cooked egg due to the fact that the egg proteins are very unstable when heat is added.  When cooked they loose some of the ability to cause major allergic reactions (IgE antibody levels).

The doctor was pleased with the initial results and asked for a blood test, or a what is known as a RAST test to compare numbers.  Unfortunately, yet another blood draw. =(  The look of horror on Rachel’s face was gripping.  The doctor saw it too.  He quickly added that we could do it the next day, or at our home hospital where she might be more comfortable.  I could have forced the issue…but sometimes mama just gets tired of the battle too.  I agreed that we would have it done tomorrow morning so we could move quickly on our next steps.  Those numbers will be crucial in his deciding what to do.  I am still praying for low numbers.  Last year her RAST test showed 15 as her IgE antibody which is still really, really high.  Praying for numbers around 3 or less.  God is able!!  Praise that the peanuts and nuts came back okay on the skin.  If the blood comes back low, we will challenge that sometime next week.  Rachel has never in her life had a peanut or a nut.  Not sure that she would like it…but SURE worth a try! =)  Oh the calories in those healthy nuts could be a huge blessing.

Rachel will still be a mess about the blood draw in the morning, but hopefully, it will be quick and as painless as a poke can be.  Not sure her arms are healed from the last stick…but thankful for the seemingly hopeful news that we are making tiny steps towards adding some foods to our girls diet.  Still praying for those eggs, and the results from the blood test knowing that God is good all the time!  Thank you for praying alongside this tired, weary family.

 

 

 

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