“'Cos everything is beautiful when you're looking through rose colored glasses!"

Happy Saturday everyone!! We had a busy week of appointments and some nice hang time with Cindy and Justin in NC. We are SO lucky to have friends and family to stay with on this trip. This would all be unbelievably harder if we were schlepping between hotels, but it feels more like visiting and hanging with some really great people. Thank you Cindy and Justin and Amy and Kevin for making the trips so much fun!!

So, we met with all the usual doctors and everyone was happy that Sarai is making progress. (Sarai had a couple little gifts for Dr. K and Dr. Escolar… the onesies she wore at the last trip. The one for Dr. K says, “When I grow up I want to be just like Dr. K!” And Dr. Escolar’s says, “On the eight day God created Dr. Escolar!”)

Where do I even start with all the news we got?? To begin with, Sarai is at about a 6 month level. She’s learning and getting stronger, just slower than other children. The fact that she’s learning is very good, they would be most concerned if she had plateaued. Dr. Escolar had 101 suggestions for us that we’re trying to implement now; placing her on her tummy even more, trying to get her to reach for things when she’s on her tummy, dropping toys to see if she looks for them, stretching her ankles, putting toys and objects on her left to stimulate her left eye and therefore her muscles, to name a few. The list goes on and on. Sarai’s left eye is weaker than her right, and because she doesn’t see as well from her left eye, there are very slight asymmetries in her muscle tone and reflexes. We’ve got to stimulate that left side! Hopefully Dr. Escolar will have all of her recommendations written up by next week when we have Sarai’s annual early intervention meeting and I can share it all with the team.

Dr. Escolar did say that looking at her assessment from February, and look at her assessment from this week, if she HAD to guess, Sarai should be sitting in the next few months, pulling to stand by next summer, and walking by the time she’s three. This is the first time anyone has said that they’ll think she’ll walk. Of course, anything can happen, no one knows for sure. But I also thought, after she said this, that she didn’t take into account that in the past 6 months, Sarai had a MAJOR setback with the spasms. Three months of the last six were spent just getting her back to where she was before the spasms. She gained so much weight she could hardly move.

Her eyes, if not totally closed, wouldn’t focus on anything. She wasn’t even smiling for a month.

(Can you imagine why I've kept those pictures to myself??)

Taking that into account, I think she’ll develop even faster than Dr. Escolar thinks. I mean (hold on, let me get my rose-colored glasses), just in the past 6 weeks the girl has practically moved mountains, seriously. I mean, look at her!

I’m desperately optimistic, and so proud of how far she’s come. She’s really amazing.

The doctors told us a lot of things. Dr. Mikati wants us to talk to Dr. James about monitoring her taurine level and giving her supplements, and having her wear sunglasses outside.

For some reason a higher level of taurine and less exposure to light seem to lessen the chance that the Sabril could hurt her vision. Dr. Escolar doesn’t want her to stay on Sabril, if we can possibly switch her to something else. We’ll see what our Dr. James says.

We haven’t heard from the EEG done last week or from the MRI (done just a couple days ago) yet. I’ll keep ya posted.

The cats seem to finally have warmed up to Sarai being around, maybe they missed her while we were gone. (At least Mason has!)

She pets them when they rub up against her and pulls their ears, but they stay very well behaved while she explores.

I’ll tell you what, it feels good to be home! Sarai wasn’t eating great while we were gone, and she’s staring to pick up her appetite back here on the homestead. We discovered that she likes mac and cheese, and she’s starting to like snacking on more and more table food.

I’m rambling. Enjoy your weekend everyone!!