It’s been a really long, hard day. Grayson was officially diagnosed with Mitochondrial Disease this morning. Although I am relieved and glad to finally have a diagnosis, there are a lot of emotions, fears, and sadness that I am processing. I’m not really ready to write about it in detail right now, and a glass of…

This week, there’s been a lot of controversy and discussion in the feeding tube world over the K-E Diet. The article claims that brides are using this diet to quickly lose up to 20 pounds in 10 days. This diet involves having an NG tube placed for 10 days, and the women are on continuous…

We started off the day with a rough start- vision therapy at 8:00 and Grayson was having some sensory issues- he didn’t want to play with any of the toys his teacher brought, and all he wanted to do was swing. His teacher says G has a major need for motion, as his vestibular system’s…

This month, the PAIL theme post is What Kind of Parent Do You Want to Be? Before I had Grayson, I certainly had a picture in my mind of what my life as a mom was going to look like. I had certain ideas and expectations of how my children were going to develop and behave. And…

This picture (taken about 30 minutes before bedtime yesterday) pretty much sums up my mood and attitude about life the past few days… Meh.Bleh.Ugh. And from my last few posts, I’m sure it’s obvious I haven’t really been in the best place lately. I’ve just been in a funk about Grayson’s stuff, and have had…

Easter weekend was beautiful, with picture perfect weather. We ate out with family and friends three times, and were able to sit outside each time. Grayson got a haircut… And looked oh-so-adorable for church in his springtime jon-jons The truth is, we had some really lovely moments this weekend, but overall it was hard. The reality is doing…

There is so much going on in our lives right now, but in the past week, I just haven’t felt compelled to write. Usually writing is such an outlet for me, but right now, there are some things I’m just not ready to write about. I’ve been processing information in my head and still am…

Crisis averted. I love all ya’lls comments to my venting post yesterday and your suggestions on what I should do. Thankfully, I didn’t have to sing at the top of my lungs or drag my screaming baby to annoy the whole doctors office staff. And I got the paperwork. Signed, sealed  faxed, delivered. Of course,…

Why can’t people just do their jobs? I am beyond frustrated tonight. We are applying for a benefits program for Grayson- MDCP. If he qualifies, it will give us tremendous financial support and services, which we desperately need. There’s a long waiting list for this program- when I called and got Grayson on the list, he was…

Grayson has gone to bed before 5:30 the past two nights, and slept more than 13 hours. Usually I put him down right at 6:00, but by 5:00 yesterday and today his body language was begging me to put him to bed. As soon as I lay his body on that mattress, he was out.…