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CF Appointment

IMG_8536We had our quarterly clinic appointment on Wednesday.  It was a good appointment for the most part.  Rachel’s lung function was at its high this year of 91% up from 88% last visit.  Every bit up, is a bonus.  However, the really fun news was that her total volume had gone up almost 15% from the last visit and I think the highest that it has ever been.  That was really good to see!  The doctor inquired about what we were currently doing to increase this.  The only thing that I could think of was going to gymnastics twice a week and the countless hours spent at home practicing roundoffs and muscle building handstands. =)  He said, “Whatever it is, keep it up and let’s see if we can get your numbers into the mid to upper 90’s!”  Love those kinds of reports.


One of our favorite CF doctors! He is amazing, kind and ever encouraging! Suppose that’s why he is our favorite. He has studied cf for 25 years and is wise and humble in his interactions every time with us.  It is appreciated greatly. 


The rest of the appointment was spent talking about weight. =(  Not so fun.  My heart was heavy for Rachel.  She actually is still hanging in there and not dropping any which is good.  However, she still has not gained much.  Last Christmas she was near 67 lbs. and she can’t seem to get back above 60 no matter how hard she tries.  As much as she does not want a feeding tube, I am not sure there is a way around it.  God knows we have all worked as hard as we can possibly work!  We went down the trail for a while about what the next steps would be and how we would figure out formulas.  Nutritionalist said she likes to put kiddos inpatient for a week with a ng tube first to see how they tolerate the formulas.  (Although, she knew that wasn’t going to fly with this mama.)  So, we discussed other strategies for accomplishing that goal.  One last ditch effort the doctor suggested was a trial on marinol.  (This is medical marijana with low thc levels).  While the stigma of this drug is a hard one for me to swallow…if it helps her, I am all for it.  When I stop to think about all of the copious amounts of drugs that she is given each and every day…they all come with side effects.  So we have a prescription in hand.  However, I still want to ask, read, and find out as much information as I can before I give this to my baby girl (not unlike I do with EACH and EVERY OTHER drug that has been given to her).  The weight has been a struggle for her all of her life.   So, the feeding tube is still on the forefront of our minds.  The dr. suggested we talk to the surgeon about the few limitations that she would have with a tube placement.  Gymnastics and bars, seem to be among Rachel’s top concerns.  So that will most likely be our next step unless some major improvement is made.  She is still hanging in there, but every calorie and ounce is such a hard fight.  There is some hope though that with the addition of the foods containing eggs, that there will be some marked improvement on weight.  At the very least we hope for less food battles as they are EXHAUSTING!!  We go bak to the allergist on Friday to do the food challenge with peanuts. So we will see.

There are so many complicated layers of this difficult disease, sometimes all of this just seems like such a heavy burden for a little one to have to carry.  Praying with each passing day that our girl grasps the truth of Christ’s love and care for her even in the hard!  God is strength and comfort for the weary.  We are a bit weary right now.

I do not know how anyone could ever face the trials of this life without the saving grace, strength and comfort of knowing that GOD IS NEAR!!

One of my favorite verses.  Ephesians 17-21  So that Christ may dwell in your hearts through faith; and that you, being rooted and grounded in love, may be able to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ which surpasses knowledge, that you may be filled up to all the fullness of God.

Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.



2 Responses

  1. Thankful for Rachel’s lung health and so sorry about the continued weight struggles. We can relate. I wanted to say that if you do end up going with the g-tube, Rachel should be able to continue gymnastics/bars. Olivia just got her g-tube in August. She’s been in gymnastics since September. Even though she’s little she does the bars, with assistance and the coach just makes sure that the bars are at her hips, where they are supposed to be with straight arms and that she doesn’t press the bar on her stomach. I also put a small piece of gauze and tape over her button to help smooth it out and cover it completely so if she did rub up against the bars the wrong way, it would be less likely to hurt it or pull at it but more so glide over it as it’s secured to the tummy. So the joy of gymnastics should not have to be taken away from Rachel if she ends up with a g-tube, perhaps a small glimmer of hope. I pray the adding in of cooked eggs will benefit Rachel’s weight as well as the marinol if you choose to go with it. I’d be curious to know if the marinol helps Rachel’s appetite. Even with the g-tube, Olivia’s appetite is very poor so we still look for options to increase her appetite aside from the periactin which we have discontinued because of the awful behavior changes it has on Olivia. Blessings to you, and the Happiest of Holidays.

    • Sorry, just getting to this. =) Thank you for sharing. There is such a blessing in knowing others are walking in a similar journey. There is great wisdom to be gleaned from others. Good to hear about the gymnastics. We are STILL yet to get the marinol (long and so far frustrating process). It should be here this week, so I will let you know what we think of it.

      Pray that you have a beautiful Christmas!

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