• My Family

    Blessed by the Lord for the Joy of family!!

  • Rachel’s Daily Cystic Fibrosis Medications

    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
    Ursodial (2x)
    Glutathione oral (3x)
    L-Arginine (1x)
    Acidophilus (3x)
    Vitamin (2x)
    Periactin (2x)
    vitamin d3 (1x)
    Cal/Magnesium blend (1x)
    ADEK (1x M,W,F)
    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
    fish oil (1x)
    nasonex (1x)
    zyrtec (1x)
    azithromyicin (M, W, F)

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Weekend

This past weekend we had the joy of going to watch my oldest son play basketball in Kansas City.  It was a delightful time, and allowed for some wonderful memories.

IMG_6101The boys exhibited a great amount of maturity and poise despite being among the youngest ones at the Regional tournament.  It was fun to watch them play.  However, my Nathan hurt his shoulder in the second and third game which was really dissapointing and frustrating for him. =(

 

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One of several steals for a breakaway layup. So fun to watch!

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Working on that shot! =)

It was a lot of fun, to go.  Although, I don’t know why though it strikes me so profoundly when we are around others just how different our family is from others.  As much as we try to go with the flow and be “normal”…cf rears its ugly head and reminds us that our life is SO different even if only in our minds.  TIME is certainly on the top of the tier.  As much as we were thankful for being able to go, the time aspect of cf is REALLY, REALLY tough when you are trying to fit into others plans and schedules.  Early games, late games, and time away from the hotel made treatments a bit tricky.  Rachel’s treatments have been and will continue to be a top priority for Rachel’s health.  But missing things because of treatments is hard, on us all!

Another unexpected component of traveling with cf is not being able to control our environment.  It was about 15 degrees the first day, and a guest in the hotel decided that it was okay to smoke in the stairwell.  Well, our room was the first one atop the stairs.  The smoke came directly into our room. =(  So after talking to the hotel staff about switching rooms (at 11 pm and finding that was not an option).  Mama bear came out.  With permission,  I wrote a note asking whom ever it was to not smoke.  I placed it on each of the three landings explaining we had a child with a serious lung issue and that the smoke was coming in our room.  That was a necessity, but still felt odd in light of the whole team being there.  After I put up the note…the smoke in the hallway diminished!! Still felt weird needing to put it up. =)

The hardest part of leaving our house is the “stuff” that we need to bring! =) My husband is amazing and this weekend I was reminded again WHY he is the one that usually packs Rachel’s stuff.  I get interupted by the kiddos asking me questions WAY more than he does.  Packing Rachel’s stuff DEMANDS focus!  Over the last 9 years and less than a couple of handfuls of times away from home, I have forgotten crucial pieces of her medication nearly every time!! (When there are meds in the refrigerator, and numerous cords and other apparatus everywhere…it too common place and easy to be forgotten.)  This time it was no different. =(  I forgot one of her medications.  It was not a crucial one, but still…SO FRUSTRATING! I remembered 16 of her 17 medications which sounds like pretty good odds, but still discouraging when I am the one that forgot.  My one consolidation, I DID remember all five kiddos!

One last thing, on the way home…one of the pieces of Rachel’s nebulizer broke off.  UGG!!  We didn’t think it was that big of a deal because we had a couple of “spare” nebulizers to use.  (It was a bit disconcerning in the fact that it was a Saturday night and there was no place open to fix the part until Monday.)  So thankful that we had a back up, but it took FOREVER to do just one medication.  25 to 30 minutes for albuterol nearly made me crazy. =) Rachel does 5 inhaled medications every morning, four of which go in the nebulizer!!  And then 3 in the evening…makes for a LONG TIME sitting with a mask on her face.

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Here are three of the four nebulizers that we have in our house. The right one is the one that we currently use (with the broken part.) The middle one is nearly 9 years old (I think it is the one we used when we brought Rachel home from the hospital!!!) Then the one on the left was a portable one that is nearly 8 years old!

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This little piece on the right is piece that broke off. SO thankful that the company had another one on hand.

We were able to replace the piece Monday morning!  Praise the Lord.  We are due for a new nebulizer, but glad that we don’t have to fight the insurance aspect of it right now!  Thankful…that is a battle for another day.

 

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