Thursday, January 3, 2013

Pretty good day

Reagan didn't sleep much again last night. She'd appear to be asleep one second, and then then next she'd be moving around, eyes wide open! I can relate. Ryan woke up crying literally every 15-30min all night long! I'm not sure what his deal was. I don't know if he's having teething pain, getting sick, or just training himself to wake up every so often....whatever it is, it's not good! I was SO exhausted from the constant up and down, I feel like I didn't sleep a wink! The fussiness continued when I got up with him this morning. I finally had to just lay him back down in his bed and take Reagan to a far away room so she couldn't hear him (or we would have had two kids screaming)!! Reagan's day didn't start out well. She had a major meltdown this morning when Daddy tried to say goodbye to her! Lots of tears were shed, but I eventually got her to settle down and she didn't do it again all day. Today was actually another pretty good day for my girl. She had OT, speech, & PT and did well for them all (and even did an hour in her stander after PT)! She's still congested today and coughy/chokey but I think that's more of her way of dealing with the sinus drainage (she's also a little sneezy). I'm still doing the saline, so she's loving that. Tonight my friend from Baylor came by with her family (4 kids- two of which are twins)...let me tell you, it was a zoo! Reagan was a trouper though and despite all the noise and chaos, she just sat there smiling! Ryan was loving all the commotion. He had a ball with the 4yr old (not as interested in the 13mo twins). Her husband is the geneticist that has sequenced all of our genomes. He seems pretty certain that whatever is causing Reagan's mitochondrial disease is not inherited from Mike and I. That's good news (especially for Ryan). This could mean that she just has a random (previously unidentified) mutation or it could mean that her mitochondrial dysfunction is secondary to something else. Apparently she has a pretty "clean" genome with only a handful of potential candidates, so he's going to do some functional assays and let us know what that yields. Interesting stuff. Please keep it in your prayers that our girl gets some good sleep tonight and pulls out another good day tomorrow! (and pray that Ryan sleeps too...for his mommy's sake)

What Ryan was doing right before our company arrived!!! What am I going to do with this one??










4 comments:

Diane said...

I cannot decide which pic made me grin more, Ryan with his mess or the whole group of babies sitting together! You had your hands full!

Glad Reagan is holding just hoping she can have a really nice long run of really good days for you.

Good news on your genetics! We got some more results yesterday, so I guess yesterday was genetics day! :-)

Fingers crossed this is the beginning of a long good run and that the little guy decides he LOVES to be a good sleeper! :-)

the Grandma said...

OMG!!! How cute are they all together! We need more babies in the house!! At least 2 more!! LOL!

Reagan Leigh said...

LOL is right!! You weren't here...it was a mad house!! How people do it with 6, 8, 10...19!?!?! I have no idea!

Heather said...

I am with Grandma! At least 1 more. I survived with 6. Barely. Or at least so far.

Look at Ryan standing at the couch. How can that be?

Hope Reagan kicks this soon and doesn't get as sick as little Miss Z.