Forgetful Mommy

I forgot enzymes for the first time this past Sunday...... I felt like a horrible Mommy, but luckily MY mommy was home and available to bring them to me. :) While we are doing the trial for the new enzyme it's not like I can stash some for emergencies like I did with her old ones. So I just have to be more careful.

Speaking of the trial.... that's going very strangely. The first 10 days were the "constant" to make sure she could do the actual enzyme itself, in 3.5 pills that were 5,000 units each, no big deal. The second 10 days were to test the different doses, meaning we gave her 6 pills of 3,000 units each but in the same way we did before the trial (on spoonfuls of babyfood). The 10 days we just started yesterday are to test the new method of giving her the enzymes. The new method: enzymes in apple juice in a syringe with a nipple.

Let me tell you, that was not easy.....It was the strangest thing. Calleigh hasn't had apple juice yet (and neither would most infants they would do this with if it gets approved) so she dribbled it out of her mouth more than she drank it. And then the apple juice was gone and the enzymes were just stuck in the tube. Not easy. Of course we aren't giving up, but day #1 of new method = NO FUN.

Calleigh got to hang out with Aunt Sass last night and for some reason she still likes her... who knows! lol It was good to see them together. I can't wait for Aunt Snaves to come home to spend more time with Calleigh too. :)

Today's prayer for Calleigh: Lord, I pray that until Calleigh is old enough to decide for herself that she doesn't mind doing trials. And I pray that she is safe through them and that her participation in them gives the CF Foundation the help they need to progress with medications and methods that make the lives of CF children easier and less painful. I pray that these trials lead to a cure for CF. I pray that when Calleigh IS old enough to have an opinion on doing these trials that she decides it is well worth her time and effort. I pray that she realizes that her part in these trials has been a huge help to the lives of others and the progression of medicine. And as always, please help her little lungs to function (and to kick the bit of mucus lodged in there this week) and that her pancreas keeps digesting all the nutrients they are supposed to. Please help her to have a good day with Jessica and Ezzie tomorrow and to know her mommy is always thinking about her.


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Blessings

Just so you know - today was better, sickness wise. :)

 

Today I couldn't help but think about a blessing God has give to us.  At just the moment when Calleigh's medical bills started adding up, God sent Dewey.  No one can really understand the blessing that the entire Hughes family has been to not only me, but my entire family.  So much so that they are an extension of our family.  But even more than that, Dewey has decided that he wants to help with Calleigh's medical bills by running a marathon to raise money for her.  I am literally in tears as I think about how much that will help and mean to us.  I know most families feel the pain of the economy right now, with or without CF, so we feel so blessed.  God also blessed me with the time this week to have the bank account set up for Calleigh, which was amazing!  Now I just have to figure out how to link the pay pal account to her facebook and this blog so Dewey can do the same........ anyone?? anyone??? :)

 

Seriously, I honestly cannot fathom what I would do without the family and friends we have.  Even the friends/family we don't see often still radiate their love to us in various ways.  We never feel lost for love or prayers, and I pray that Calleigh always acknowledges that love from God as He shows it to her through her friends and family, among other ways. 

 

Today's prayer for Calleigh:  Lord, even as it may be redundant, I pray for my daughters health.  Please fill her lungs with beautiful air, chase away pollution and harmful bacteria so she may always know the beauty of a full breath in her lungs.  Please keep her pancreas clear with from blockage and help enzymes to digest her yummy formula and baby food.  I pray that she will KNOW you, not just know OF you Lord.  And thank you for the way her face lights up when I come near or when her daddy reaches to pick her up in the mornings.

 

PS.  In the future, I will try not to write these during lunch at work.  If anyone were to look at my desk right now they would see me in tears just thinking of my lovely precious Calleigh and the blessings in our lives. :)  lol

Sick Mommy=Not fun

Not only does my time with Calleigh seem short on normal days, but today I fought of nausea all day... Luckily she doesn't seem to notice because she loves to just play on her own.  But it did make trying to do her nebulizer and pats very hard.  She gets stronger every day fighting with me so without even my normal strength, she wins.  Hopefully that cough doesn't get worse because I can't muster the strength to hold her for long.  :(

Hopefully I get better tonight because I am looking forward to the weekend with her.

Today's other struggle is that she seems to no longer want as much formula.  At night I can get her to take a lot of baby food and a normal bottle, but during the day she won't take much baby food and has a horribly low oz bottle.  Hopefully it's just a phase since she is teething but we'll have to see.

Today's prayer for Calleigh:  Lord please watch over my baby girl.  Help her to have a good night of sleep, with beautiful baby dreams.  Be with her lungs and her pancreas, help them to function as they should so as to help her breath and grow as a little girl should.  Help her to feel the love that surrounds her from her mommy, her daddy, her family, and most of all her Lord.  Please pull her to you so that she may know you.

Starting Life....

For my first rough blog..........I love my daughter.  She is perfect. She is sweet.  She is loving.  She is beautiful.  She is a sweet child of God that deserves all of her dreams to come true.  She is a part of the dreams in my life that have come true.  I love her. :) 

I don't plan on posting TOO frequently. :)  I don't want to become annoying... lol  but I do want to share what life is like with this sweet little girl who has a lifelong struggle ahead of her.  

To briefly sum it up:  Cystic Fibrosis is a genetic disease that affects the lungs and pancreas.  Calleigh has to take enzymes to help her digest her food, and she does twice daily sessions with a nebulizer and "pitty pats."  Some day we hope that medication will progress so that she can have an easier time but for now we take things a day at a time. :)

Til next time!