Three Strange Words: Alpha-1 Antitrypsin Deficiency Hello! I’m your guest blogger, Jen, every Friday in the month of October. I’ll be writing about my special little girls, Grace and Meghan, who were both born premature and also have a genetic disorder. This is my introduction. In April 2002, our Gracie entered the world screaming as…
Category Archives: Day In And Day Out
Getting Back on the (GFCF) Wagon
Over the last few months, I have gradually become more and more lenient about my son’s dietary restrictions. An artificially flavored drink or package of fruit snacks here, a few dairy-laden Hershey Kisses there, and a double whammy of M&Ms thrown in for good measure. I didn’t really think I was seeing any negative reactions…
Eeeyore Has Left The Building
I pulled the following post out of my archives for one particular reason – to show that there is hope for even the most damaged of children. I wrote this two years ago and at that time, wondered if my now 16 year old son would ever find peace and joy in life. I’m happy…
Where It All Heads South
Last week Reed and I took Parker to get his monthly blood draws. Two results that always cause us to hold our breaths are his BNP and his liver function panel. An upward trend in either spells trouble. The next night Parker’s cardiologist called to let me know that both values came back elevated. I…
Talking About Your Child’s Special Needs
Based on this post, many of you asked my thoughts on specific issues. Last week I began writing about the requested topics. Talking to people about your child’s special needs can be difficult. You should always remember that who you talk to and what you say is always your choice. Also remember, talking about it…
Not your average to-do list
I wrote this guest post recently and have been asked several times to repost the list portion. This list is what I wish another person had sit down and explained to all my friends and family….the things I would have told everyone if I’d understood at diagnosis. The things that could have saved friendships and…
You Know You Are The Parent…..
Okay. After of week of lacing up my Army boots and marching head first into the battle of getting Parker the proper vent for his needs, I’m ready to have a light hearted moment. Or several. How about if we create a list of how ‘You Know You Are A Parent Of A Kid With…
The Realities of Reflux…
My husband always jokes that he can tell what kind of a day it has been by peeking out onto the back deck to see what has been hosed down during the day… However, some weeks are too much for even humor to salvage. Anyone who has raised a child (or two or three) suffering…
Finishing the Game
Yesterday, my son and I played an entire game of Chutes and Ladders without him crying or running out of the room, even when he didn’t win. This has been a long time coming. Michael has wanted to play board games for the last couple of years, but would usually quit in tears when it…
Stress-Busting
As parents, we wear many hats. We are parents, teachers, tutors, cooks, chauffeurs, mediators, health-care advocates—the list goes on. It’s a job that poses many challenges; but it also provides tremendous rewards. The hugs, kisses, and smiles are priceless! Some days the hustle-and-bustle of our parenting gig and all our other jobs can leave us…