Today our PT and a rep from a wheelchair/medical equipment company came to the house and we ordered Grayson his wheelchair and bath chair. Any sadness I had about ordering a wheelchair for my child was gone when I saw how comfortable he was in the chair. He sat happily for about 30 minutes. And…

We got up early (5 am- ugh) this morning because Grayson was supposed to be sleep deprived for his ABR. I was dreading the appointment because I knew getting G into “natural sleep” for the test was going to be a challenge. I had to give him his seizure meds at 9 am, so I gave him some…

I know my last few posts (including this one) are just records of Grayson’s medical stuff, but it’s good for me to write it down to have as a record. I promise I’m not giving up on more interesting (or not) posts about our life, but there are things I just can’t write about right…

Once again, I’ve been a bad blogger this week and even worse commenter. I’m sorry. We’ve been busy with Grayson’s ever-packed schedule as well as going through some things I’m not ready to talk about right now. But we are fine, and I’m happy to say I am showered and in my jammies at 7:16…

I took a little blogging hiatus last week, not for lack of things going on, but I just didn’t have the drive to sit down and write. We are doing fine-here’s what’s going on in our world. We are taking our first summer “roadtrip” tomorrow for Grayson’s nursing home visit. If you remember, nothing about…

I am raising a medically complex child. As I’ve said before, it’s very overwhelming for me to see all of Grayson’s symptoms and issues listed in one place. Because he has so many of his body systems that are affected, he sees a lot of doctors. We have eight specialists, plus our pediatrician, that we…

Dear Grayson, Today you are 20 months old and you got your hair cut. And I think you are about the cutest thing I’ve ever seen.  And I’ve spent all day hugging you, kissing you, and telling you how much I love you. But you’ve also worn me out today, so this month’s letter is…

I hope I don’t fall asleep writing this update. Seriously, I am worn out. This week has kicked my butt. Fortunately (?), my pint-sized sidekick is still slightly drugged from being sedated for four hours this morning and is already down for the night (please, oh please, let that statement be true!) so I can…

Monday, I have no complaints. You kinda came through for us today. We started the day with a Vision therapy session with Jello- how fun is that?! But really, G wanted nothing to do with the jello in his mouth- I think he’s like his momma and doesn’t have much of a sweet tooth. Plus,…

I had a great Mother’s Day spent with beautiful weather, family and friends. For all you people who told me that yes, I should go buy new sheets even though they are so expensive,  you will be happy to know that my sweet husband surprised me with sheets for Mother’s Day- yay! And the G-Man gave…