My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!

Love Love Love

Always Always Always

Friday, December 7, 2012

It’s been awhile…

Life has been busy. Brads schedule keeps fluctuating, two kiddos in school on different schedules and a baby with many appointments all over the area make for many busy weeks.

Brynlee is a sweet pea, such a happy, easy going baby girl. such a blessing in that. she adores her brothers and they goo-goo over her every chance they can get (you know when they’re not busy doing other big boy things!) Smile Right now her only issue is weight. We’re working hard to find a good supplemental formula (I think we may have found it, knock on wood…) to give her to swallow her enzymes and a bottle or two a day to supplement as well. I’m mixing it at 27 calories instead of the regular 20, and after 6 different formula’s the Nutramigen so far is doing ok for her. we also believe she has a milk/soy protein allergy… so she’s fluctuating between not being on the growth chart at all, to the highest of the 3rd percentile. we’ve been taking her to clinic every other week…and now we’re kind of down to crunch time. in her first year of life as babies grow, so in turn do their lungs, so since she’s not growing well, neither are her lungs….not good. and we know that overall cf lung health is directly correlated with good nutrition, we can’t continue to let her weight remain an issue. I take her back to clinic this Wednesday, and if her weight isn’t improved after this week of added feeds, higher calories and the new formula, then she will be admitted for an NG tube. her body perhaps just needs a very elemental, predigested, broken down formula to absorb and grow as she should be. my heart is torn in two directions with this, because naturally its bringing Conner’s situation all back to me which is difficult, but also in my heart I want her to be fat and healthy. so naturally we’re going to do what's best for her, whatever Wednesday brings, and deal with the emotion that comes along with it as well. I can’t be wonder woman and pretend it’s not hard, but I also refuse to let myself feel guilt over something that’s out of my hands.

so for now that’s all there is to update on. lifes a bit rocky but we’re getting by, and we truly feel the love and the tremendous support we’re receiving from most everyone we speak with. it means so much to our family to know we’re not alone, and that we’re still very much loved and prayed for. It makes it all a bit easier! we have the best friends (real and virtual) in the world and we love and appreciate you all very much!



Related Posts with Thumbnails

Did You Know....

There are over 100,000 people, the size of a small city, on the transplant list in the US.

There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).

In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.

From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.

click here to join the organ donation registry