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Update on Eating

scaleI have not written an update partly due to the fact that life has been so busy the last few weeks, and partly because there are some mysteries related to the eating process recently.

Last I wrote, we were letting Rachel eat every meal and snack on her own (verses our tyrannical efforts to shove food at her at every turn).  She was FAILING miserably!  Lost close to 4 pounds. So as her appointment approached I was praying and trying to figure out what to do.  We had begged, pleaded, bribed, threatened and harassed her something fierce…unfortunately, to no avail.  So the day before her quarterly appointment, I called and talked to the Dietitian. Explained the situation, and asked her not to flip out on us because we were trying to do what we thought was best.  (At noon on the day before Rachel’s appointment she weighed in at 50.6 pounds on our scale.)  We ended the phone call with my deep resignation at the fact that the Dietitan was going to start looking in to feeding tube formulas that Rachel was not allergic to and that this was perhaps the next trial that we would face in regard to CF.

Next day appointment time came around.  I usually, not too ashamedly, dress her in layers and fill her full of water (which if you did not know, weighs in at about 8 lbs per gallon, so if I get her to drink a quart to a liter, that is close to 2 lbs.  NOT THAT I KNOW THIS! =))  This day, however, I looked at her and said, well here goes and did none of that.  I told her, “Let’s see what they have to say.”  As we were getting ready to leave for the appointment, Rachel was profoundly affected in a way that I have not seen so far.  She was in tears and hiding.  She was afraid that they were going to be mad at her.   My heart broke for her!  While I have to be the tough mama most of the time, she is still my sweet baby girl.  This disease comes with so many deep miseries!  Heartaches and losses that are hard to put into words.  Most times I truly can not think of them because it is crushing.  Rachel is facing a monster of a disease.  One that despite her best efforts seeks to steal and destroy her life.  Tough, to say the least.  I tried to calm her down, and let her know that God was in control with ALL THINGS.  If a feeding tube is in the plans, it doesn’t happen without His care.  He knew what she needed.

We got to the dr. and the first thing we did is check blood pressure, temp and weight.  She stepped on the scale and it registered 53.8!!!!!  I about FELL OVER!  I asked them to have her step off and back on again.  She did.  This time it came up at 54.0!  Amazed and a bit dumbfounded, we went on into clinic. Of course since I had phoned in the day before the doctor, nutritionist, social worker, respiratory therapist (and whoever I missed) all came with barrels loaded.  However, with this weight, they were not sure what to say.  Evenso, because they see this enough poor appetite/weight and know the risks related to it they needed to respond.  They all proceeded to talk to poor Rachel for the next 45 minutes about how important food is, especially for someone that has CF.  ( I felt a little sorry for her after the first 10 minutes.  She is still a child.  There is no way of her fully understanding the ramifications of her not eating.)  2200 to 2500 calories and how she could break that down through each meal and snack. =( Towards the end of the appointment we were offered some additional help.  They ordered her to increase her appetite stimulant to almost double what she was currently taking.  Kind of hard to force someone to eat that is very rarely hungry, if ever at all.  Most of us can not remotely understand that!!  However, that is the crux of her problem.  I truly think that she would like to eat, mostly just to make us happy, unfortunately she is not driven by the actual mechanism of hunger.  So while some may think it is a discipline problem (and I am sure that it could be at times for some) hers is truly a matter of not have an appetite.  If I had to take all of the medication that she does each day and not be able to fully digest ALL of it…pretty sure that would make me understand in a way that I can not now.

You can bet, when we got home the first thing I did was stick her on our scale to make sure that our scale was not broken.  It came back 53.8, so I knew we were in the ballpark of the doctor’s scale.  So while thrilled to see the higher weight, I KNEW that there was absolutely no explanation, other than an incredible blessing from the Lord.  (The day before I watched what she had eaten.  Not a bite for breakfast, and only 2 bites of an hamburger and 3 tator tots for lunch, along with a decent meal for dinner…that doesn’t equal almost 4 lbs.) I believe it was truly a modern day miracle!

The part that I have struggled with is the “What to do with this now?”.  Somehow trying to understand things makes me feel more in control.  I didn’t not understand any of this!  Why did God allow for Rachel’s weight to be good?  The days following the appointment her appetite was still horrible.  (She was back down at 51.0 with in 2-3 days.)  I thought that the dr might “scare” her a bit, but that was not the case.  So in trying to figure out the “why”…the one thing that I keep coming back to is the fact that God is in charge!  Whether we see it or not, His ways and action are not our own.  He does things and allows things that sometimes under our best efforts, we will never understand.  However, He does ask us to TRUST Him!

**Update*** We did not up the dose of the appetite stimulant due to the fact that it knocks her on her tail for about 3 to 4 days after we start her back up (I have mentioned that it is extremely common for her to take 2-3 hour naps the first couple of days on the medicine.)  With all that was going on with Great Grandma Bryan’s funeral arrangements we decided to wait until this last week.  Happy to note, that while she has been tired, and yes, a bit on the cantankerous side, two of the most common side effects for her—-SHE HAS BEEN HUNGRY!!!  Yipppee!!!  Praise the Lord for His great mercies.  We all needed this break.  As of last night she weighed in at 53.6.  Back on the upward move.  God is good!

I write these words as a reminder of His faithfulness.  I write these to help me process.  I write to praise Him for His goodness and miracle working power that defies logic and understanding.  Rachel’s weight for now is good. While we know that it will constantly be a concern, and that should she need a feeding tube at some point, still– God is in control!  Once again, CF provides an avenue that the Lord continues to choose to use to grow my dependance, trust and faith in Him.

Isaiah 55:8-9

For my thoughts are not your thoughts,
neither are your ways my ways, declares the Lord.
 For as the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

Thankful that I serve a living, loving, caring, and never failing God.


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