Arggg, major writer’s block or something happening here. We have so much going on, but I can’t seem collect my thoughts and write them in a coherent post this week. But bullet points are always fun, right? I had some cute pictures to show, but Blogger is being dumb and not letting me upload them. And honestly, I’d rather go to bed now than try to figure out why or worry about it anymore.
- Charlotte had her 6 month appointment yesterday- she is going to be half a year old on Saturday- what?!? How did that happen? I’ll write more about her then, but I will just say that she is my joy, pure and simple. Every day I am just amazed at the skills she is learning, and how easily they are coming to her. And she eats. She EATS. And supplementing with formula is working- Charlotte is up to 13 pounds, 4 ounces and is back to the 7th percentile. Honestly, it’s been a relief to be able to feed her another way in addition to nursing. Other than watching the weight, she has no other medical or developmental concerns. It is no exaggeration to say my experience with her compared to Grayson has been night and day.
- Ever since I heard about Sophie the Giraffe, I said I would never spend that kind of money on a rubber teething toy. I just didn’t understand what all the frenzy was about. Well, I have to admit I got sucked in. Charlotte played with Sophie at a friend’s house on Friday, and after searching at two stores, $22.99 later (I did have a gift card and coupon, so really she was free right?) my little princess is now the owner of her very own Sophie. And ya’ll, she’s magic. I don’t know what it is about this rubber toy (what should be a $1.99 dog toy according to my SIL), but these babies just LOVE her.
- Ryan and I finished Season 7 of Dexter the other day and needed a new series to watch. We started watching Scandal on Hulu and we are hooked! They only have Season 2, so it took a few episodes to catch on, but it’s been fun, and a nice distraction to all the stress we are dealing with.
- Grayson has been on the medication that we think is making him laugh for a month now. He’s still having episodes of random laughter, which is both funny and really bizarre. There’s one of his Veggie Tales songs that absolutely cracks him up, but only the very beginning. My sister got it on video this afternoon. I have NO IDEA why he thinks it’s so funny. He’s weird, but I just love this little dude.
- The laughing med- our insurance has denied coverage of it twice and we are currently appealing. Just out of curiosity, I asked the pharmacy the cost per month if insurance doesn’t agree to cover it. $975 for a 30 day supply. So yeah, we are appealing. Good grief.
- Grayson has an appointment with his Physical Medicine and Rehab doctor tomorrow and a new GI doctor next week. I’m anxious for both of these because we are having issues in both areas. He has been having a lot of leg pain lately and is back to violently vomiting every day, usually more than once. Our current GI doctor, who we like, has been unable to explain or treat the vomiting, and I just want to make sure we have tried everything possible to make Grayson’s life more comfortable.
That’s all for today!
5 thoughts on “Laughing, Giraffes, and other Happenings”
Good luck with the appointments and the insurance. Looooved the video!
We have Grayson in our prayers, as well as your family. He is an absolutely precious gift from God. Our little guy, Samuel, is 3 with complex 1 and 3 Mito. Watching your video and really without knowing anything about whether the laughing episodes have been reviewed by the physician, I wondered if these might be seizures themselves or another neurological symptom or like you mentioned, a med side effect. The other day Sam was having a seizure during OT and the therapist was telling me that she has another kiddo that has short laughing spells (but quite often) and that after everyone told the mom they were not seizures, an ambulatory EEG at home revealed they were and that he was seizing over 100 times a day and a new medication was needed.
Oh my, he is so cute! And I love the extra laughing! Sorry the insurance is giving you fits about it! Ridiculous!!! I hope they'll grant your appeal. I've never taken the giraffe seriously. Good to know from a real person that it actually is worth it. Hmmmm. Maybe one day I'll be able to find out…… 😉
Hi Amanda- thank you so much for your prayers- your Samuel will be in mine as well. When Grayson started this random laughing I actually thought seizures too, and today G's PM&R doctor suggested it might be seizures as well. I am definitely going to bring it up at our next appointment with our Mito doc.
I hope you get to find out too!