• 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)

  • Recent Posts

  • Monthly Archives

  • Advertisements

Eating Battles Return

Donuts for breakfast...yummy!

Donuts for breakfast…yummy!

I am going to warn you from the start…some of you may just want to skip right over this post, because it is me processing life.  I can tell it is truly a post just for me, (and the other mama’s of kiddos with CF, because I know you feel this too) to have a record and memory of the days that are tough.  AND, how God is good and gracious and walks tough stuff with me!

The eating challenge.  First off, I have to say, PRAISE THE LORD!  We have had about three or four months of reprieve from the eating battles.  However, we are back in the thick of it. =(  I know that this is somewhat just how life goes for us, but it is still tough, and I still feel like crying over the heartache that CF brings with it.  The constant battle for Rachel to stay at a healthy weight is directly related to her overall health!  Rachel is over 4 lbs down from where she was less than 6 weeks ago.  Grrr!!  What has changed?  If only I knew.  I do know that eating has become a battle again.

You know what really stinks about battling eating???


I guess that is why it is SO HARD for me sometimes.

Most of us are ruled by our stomaches, and yet I have this sweet, little, girl that despises eating!  She has been threatened, bribed, admonished, punished, rewarded, cheered on, and encouraged.  Still to no avail.  So many meals she gets the food in her mouth and then just CAN NOT swallow it.  It breaks my heart.  Yet, I know that she can do it.  She has just had an amazing run of doing so well.  But we are back to fighting this monster related to CF.

As I have been praying and thinking about things, God has been so very gracious to show me several hard things.  One of the things that I have figure out is that she does well when she likes a certain food for breakfast.  It is like it sets the stage for her eating the rest of the day.  (I digress, please don’t judge the healthy level of the food…this is from a mom that would love to only feed her family whole foods, and vegetables, and did before CF.  The times that I have tried to do with Rachel…she has LOVED it, but lost weight like crazy.  If left to her own, she would eat celery, apples, and lettuce all day!)  Here is a rundown of things as of late that she enjoyed.  Sausage sandwiches were popular for a while, bologna sandwiches, disgusting poptarts, homemade versions of poptarts,  apple turnovers, pizza, and the last and the best was homemade doughnuts.  Do you know how crazy it is to make doughnuts every morning BEFORE a full day of home educating?  (But we did it, why because of the pressure of CF to have the weight to fight off infection.)  Somehow these spurts of eating usually only last a short time BUT she does great gaining weight through it.  I know this is because she has a clear idea of what she wants to eat, and she wants it EVERY.DAY!  Right now we are back in a slump.  Every morning she is waking up and…nothing sounds good.  Every idea that I have… is a bust.  If I make it, she lets it sit there.  If I force her to eat it before she eats anything else…well, the day may go by with few to any calories consumed.  We have been at this for about a month.  It is so hard!  Knowing that next to medication and treatment the stress of food is incredible!  She is expected to eat 6 times a day.  I know that each pound she goes down, my stress level increases tremendously.  I know the stakes.  I even at times, unfortunately, remind her of what they are. =( (As if she, as a child, needs to have one more thing to worry about when it comes to having to fight this disease!)   Yet, we are also trying to teach her to own and be responsible for this disease.  She is and will be the one to kick CF!!  We are there to support and encourage a fight well fought!

So, now to the second part that the Lord has shown me.  The heart ache.  Last fall we did a huge transition where we stopped feeding her.  Sounds so ridiculous to even type that.  But, humility and transparency is all part of dealing with a raging disease that you are trying to fight with everything you have!  So, now the admission.  With all of our words and emotions that we share with Rachel concerning eating…I wish that I could say that it has all been done with great gentleness.  Sadly, this week I realized that so often my words and emotional state are dependent on how she is doing.  If she is eating good, then I am happy with her.  If she is doing poorly, I am frustrated and upset with her.  This realization broke my heart!  I know that it is beyond crushing to her.  The tears over food.  The harsh words spoken in an attempt to “help her, help herself”, they are all futile.  As a caregiver, I am fighting FOR her health, but so many times it results in strife with her too.  However, love and acceptance is a strong encourager.  I know it is in my relationship with the Lord!  Love that is truly unconditional yields great progress.  Unfortunately, I needed to be reminded of this again and again.  Because, while I know this to be true, I forget, life gets stressful and again He gently reminds me.  God is so good!  He is so gracious.  He reminds me to focus on trusting Him.  Not food, not medicine, not even my own stubborn will.

SO…the plan for today.

Pray hard.

Rejoice in relationship.

Eating or no eating…my love for this child is great.

Display this love.  Such as our Lord does for us…He loves us despite WHAT we do.  What a remarkable reminder today.

*As a side note, it was Rachel’s turn for a date with mom this month.  Love dates with each one of our kiddos (mom takes two one month and dad the other, then we switch the next month).  So yesterday, we hung out.  Our dates are usually nothing grands, but more just time together.  We had a delightful time.  We ran some errands, went to the library and then out for lunch.  Eating is just one of those stressful things all around.  We went to Subway because it is her favorite place to eat.  STRESS mounted.  The egg allergy is so tough to deal with outside our home.  Starting with asking the workers to change their gloves, and get ta clean knife and to be super careful about making sure there was no cross contamination.  The mayonnaise everywhere…is just plain ‘ol scary with an egg allergy!  Sitting down, every time we PRAY for protection.  As a precaution, I also make sure that I am well versed in how to use her epi pen and have an escape plan to how to get to the hospital quickly. GRR!!  Wish the life-threatning egg allergy aspect would be healed sometime soon too.  She did eat a total 6 inch subway…full of tons of vegetables onions, pickles, lettuce and tomatoes. =) Bonus though, I know what Rachel is eating for breakfast today!  The other half of her SUBWAY…it’s what’s for breakfast!



8 Responses

  1. Food and weight battles are awful – Olivia is currently in the same slump. Your words about being happy with Rachel when she eats and frustrated when she doesn’t really hit home. After my emotional breakdown with this never ending food fight 2 weeks ago, I discovered the same feelings and reactions toward Olivia. When she does well I am happy and when she doesn’t eat well, I am frustrated and at only 3 she can pick up on it. It is so heart breaking and so unfair and as hard as it is, I have tried to step back and have begun to let her control more of what she eats, when she eats as she tries to gain her independence. It is tough, the scale is not favorable as we tread these waters, but like you, I need to show and prove to her that no matter what she eats, when she eats or doesn’t that my love for her is unconditional and always there. I wish I had advice but I don’t, this struggle is so very hard and so very stressful and to each of us our own in a unique way but do know that I will be praying for your family and thinking of Rachel and praying to God for both of our girls as they continue these weight and food struggles.

    • I am sorry to hear that Olivia is in a slump right now too. =( I am hoping and praying that it is just this time of year for both our girls, and they will rebound well.

      Also, thank you for sharing that I am not alone. Sometimes it is so hard when you take a step back and realize you are fighting so hard to beat this disease only to look up and realize that the relationship is suffering in the process. And, I totally understand that emotions breakdown. Allowing God to be God when things are simple is relatively easy…it sure takes a whole lot more faith to trust Him when things are tough. Bless the Lord for building our faith through our precious children and this difficult disease. =) He is good.

      Maybe Rachel and Olivia will have to have lunch via Skype someday. That could be fun. We will keep praying for health and safety for your sweet family!

      In His Grace~T

  2. Tiffany, thank you so much for letting us into your heart and your journey through this. My heart goes out to you as you share your honest walk. Lifting you up and very thankful to know you.

  3. Praying for your sweet little Rachel (and you)…I go thru similar problems with Jaidyn (with a ton of food allergies)…though not as severe as what you’re dealing with, I get the same feelings of frustration…(((HUGS)))

    • Thank you so much for writing. I am so sorry that you all are struggling with weight/eating right now too. =( Will be praying for you all. What other allergies does Jaidyn have? We are pretty well versed in food allergies, as our second kiddo was allergic to everything under the sun (corn, wheat, soy, eggs, dairy, chicken, beef, nuts…and the list went on). I have some fun recipes if you ever have need. Allergies are HARD!!

      Hopefully our girls will get out of this eating slump, and begin to realize that this is just part of the “job” of working hard to keep healthy! =)

      Blessings to you!

      • Oh goodness let’s see..dairy, nuts, sesame and coconut are the high high ones (as well as cat and dog), other ‘high’ ones are carrot, celery, tomato, garlic, corn, beef, chickpea, cucumber, garlic, lemon, strawberries and some ‘semi-high’ are eggs, wheat, soy, apples, bananas, and oats….*sigh*…alot of the high and semi-high she can eat and the worse thng that happens is horrible tummy aches =( I feel for her. She is so picky so there’s not much she likes to eat, but she gets bored of the same foods, yet doesnt want to try new things, or DOES try and gets a tummy ache so she’s gun shy….please dear Lord, heal our sweet babies!!

  4. I accidentally found your blog a while back and have enjoyed reading it. I so relate to the feeding issues as my Bethany (with CF) also struggles to eat enough. I have never really understood why but know it seems to be that way for so many kids with cf. Bethany also goes through cycles where she eats fairly well and then all of a sudden we can hardly get a bite in her. Thank goodness she is eating ok at this time. I will pray for your daughter. It is so sad to always have to worry about getting your child to eat — knowing that their lives depend on it. I will definitely keep your daughter in my prayers.

    • Thank you, Sharon, I also took some time to look at your sweet family this morning. What a blessing! We also love adoption. =) Loved “getting to know” you a bit through your blog! Have a blessed day, and thank you for taking the time to write.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: