Praying For Parker

Yesterday we got to take a field trip to Provo to visit Dr. Oz, Parker’s infectious disease specialist. Worry not, Parker doesn’t have anything contagious, unless you count cuteness….heh. We went because of the never ending sinus infection and what the antibiotics are doing to Parker’s stomach. It’s grim, people. Grim to the point of… [Continue Reading]

Wednesday was Parker’s first official day of school. Well, kinda. He arrived at 10:30 and left at 11:30. Yup. One entire hour. Considering Parker’s health, I think that’s pretty remarkable…..for me that is. (ahem) We did all the usual first day of school stuff: The Traditional First Day of School in front of our front… [Continue Reading]

I started my day with a Diet Coke and a handful of stale popcorn. Breakfast of Champions? Nope. Breakfast of a Mama who has been dealing with what has been coming out of a certain Brave Hero’s nether regions since early this morning….yup. Smelly stuff comes with Parker’s territory. What’s a few wilted nasal hairs… [Continue Reading]

Thursday morning will find Parker with EKG probes on his chest and covered in ECHO goo. Yup, it’s time to visit the cardiologist again. Words can’t describe how much I hate these appointments. If it were possible to send Reed while I stayed home tomorrow, I would……with my bottle of valium clenched tightly in my… [Continue Reading]

The last time we took Parker to the dentist he was still so small that the dentist held Parker’s head in his lap and Reed held Parker’s feet in his lap. Me? I prayed like hell this would hurry quick and be over. Yesterday we took Parker to the dentist again. This time he climbed… [Continue Reading]

The little bits of happiness and a beautiful life with Down syndrome.

The Great Depression, My Grandparents and Me.

My dad grew up in an orphanage. His dad died when he was young, leaving his mother to raise a family of 4 kids by the money she earned cleaning homes. Because she was gone so often working, leaving the oldest to tend the younger, a neighbor called the then version of DCFS because the… [Continue Reading]

Those smiles. They’re back.

Maybe it’s because the antibiotic if finally kicking in. (We have TWO more rounds to go!) Maybe it’s because our most favorite nurse is back with us full time. (It looks as though our THIRD nursing company change has been the charm. Seriously. It’s been amazing.) Maybe it’s because I’ve been trying to get our… [Continue Reading]

Proof Positive

Parker’s need for a Sleep Safer Bed includes a lot of reasons from his severe aspiration risk to the fact that he easily get entangled in his bolus feeds tubing to the fact that he is a HUGE fall risk climbing out of his crib and a strangulation risk with the cuffed trach and trach… [Continue Reading]

So, is it still a sin to covet a…..

Our ‘extra’ oxygen concentrator died today. Well, at least we received word of it’s death. There is a ‘possibility’ of it’s resuscitation, but no guarantee comes with the $800 bucks they want to attempt to breathe life back into it. It’s a make and model that is not even made anymore, and this time next… [Continue Reading]