Posts
Ugh, Saturday
I’m frustrated and I need to vent. I’m having a hard time with Saturdays lately. I think it’s because when I was teaching, Saturdays really were a day off. With this mom-gig, I don’t get a day off- ever. And that’s fine, and I know how blessed I am to have this job. But now…
Here We Go Again
It seems like every few months, just as we are adjusting to Grayson’s current issues, something else emerges. A new symptom has popped up in the last week- headaches (maybe). For about a week now, Grayson has been grabbing his head- either the sides of his head near his temples or the back around his…
Winter is Here, but Spring is Coming
We got a package in the mail yesterday from a friend. Inside was a precious, handmade gift and this letter: Ryan and Elizabeth,I’ve been tracking your journey with Grayson through Elizabeth’s blog. I was especially moved by your friend’s description of living with a special needs child. I don’t have a child, but I could…
Waiting
Grayson’s surgery was 4 weeks ago today. We were told we wouldn’t get the results of the muscle biopsy for about 10 weeks, which to most sounds like an incredibly long time of torturous limbo. But for me, I was ok with that timeframe. You see, I am terrified to get the results. I am…
17 Months!
Dear Grayson, Today you are 17 months old. One more month and you will have been with us (on the outside) for a year and a half. I’m trying to remember life before you, and I can’t. I can’t imagine not knowing you, or not having you here with me all the time. Oh sweet…
Daddy Time
G normally goes down for bed between 5:30 and 6:00 and sleeps 12 hours without waking. We started him on the Mito cocktail supplements a week ago, and they are affecting his sleep somewhat. He’s been waking up crying about an hour after we put him down, and generally seems more restless. Tonight he absolutely…
Happy Valentines Day!
My littlest Valentine…one year later. He’s grown so much…sniff sniff. I had a pretty good day with my lovies. Ryan knows better than to buy me flowers or chocolate, and the key to this girl’s heart is Mexican food. So after his dentist appointment this morning, he stopped and got me breakfast tacos. He also…
Monday and Money
Oh Monday, Monday, Monday. I hated your guts this morning. You redeemed yourself around 11 and things turned around for the most part, but you still wear me out. Yesterday I thought we were turning a corner. Grayson didn’t vomit at all, all day- the first vomit-free day since his surgery. But early this morning,…
Feeding Tube Awareness Week
This week is Feeding Tube Awareness Week. I guess I am so immersed in all of this and have done so much reading, research and hands on learning about tubes that I forget most people don’t know much, if anything about them (I know I didn’t prior to October). The organization Feeding Tube Awareness is…