Friday, April 17, 2015

Sick nurse, sick girl?

Reagan finally slept last night!!! She woke me up around 5:30am...but I'll take it! She was super cute and sweet this morning. Very smiley. Very still. I told Reagan's nurse to just stay home today and I played nurse again. Reagan did have a bit of an explosive diaper this morning, but I didn't think too much of it. She seemed fine. She had two therapies this morning, speech and PT and she did great with both. Then this afternoon she was very groggy. She seemed a little chokey too. I couldn't tell if she was having drainage or what but her throat just sounded gunky. Then everything went south. She threw up! I don't remember the last time she threw up. And it continued...lots of throw ups. She was still very sleepy/lethargic but kept waking up long enough to throw up! Ugh. I really hope this is just a quick stomach virus and not a trend in the wrong direction. Please keep her in your prayers! I'm not even sure what we're going to do with her tonight. The only safe way for her to sleep may be in her chair right beside our bed! Ugh. Not good.

Thursday, April 16, 2015

No sleep but cute

Reagan did not sleep much again last night!! I had to move her to her chair around 1:40am. She was very vocal and wide awake (and making sure everyone else was awake as well)! She was sweet and in a good mood though so that's good. On a really bad note...Reagan's nurse is sick! She came in this morning but she had gotten sick on her way in! She thought she was going to be OK, she just kept her distance from Reagan, but then an hour or two later she got sick again! She went home and I played nurse for the rest of the day! (I'm a lousy nurse by the way...I'm so out of practice!) Reagan had OT and school (and school OT) this afternoon so she stayed busy. She's been super cute again today. I'm really hoping for some sleep tonight though. I'm exhausted!

Wednesday, April 15, 2015

Cute and spunky

Reagan did not sleep much at all last night. She was very restless and vocal and I eventually had to just move her to her chair. She's been super sweet though and had a really good day. She had speech and OT this morning and did well with both. The picture below is her working on kneeling during OT. She was super cute and spunky! Then this afternoon she had vision and did really well with that too! She was still very vocal today but a little less kooky! Hoping for some sleep tonight...

Tuesday, April 14, 2015

Gassy girl!

Reagan slept last night!! Wasn't sure that was going to happen, but she did. She woke up bright and early though. Right around 5:45am. Mike tried laying down with her, but she was just too kooky! I moved her into her therapy room and she settled down a bit. I laid back down and she fell back to sleep as well. She woke back up around 7:15am and was very vocal again (she's also been grinding her teeth a lot). She's been this way all day. We still suspect tummy problems. She's been having major gas issues lately. I mean serious gas! Getting tons of air when we vent her g-port (sounds like a wind tunnel). Today her nurse finally called the GI doc and got an order for simethicone (gas drops). It's worth a shot. We have to get it in her stomach though so that either means putting it through her g-tube (normally everything goes through her j-tube) or giving it to her by mouth! It's only a half a dropper, so I think she could handle a drop at a time, but we'll see. I remember giving her those often as a baby because she had so much gas, but it never seemed to help her. We'll see. I also bought some Hyland's natural gas drops...I figured if the simethicone doesn't work, we can give natural a shot!?!? She had OT this afternoon, followed by school. She actually did surprisingly well with both...all things considered.

Monday, April 13, 2015

Vocal and kooky

Reagan slept well last night and woke up vocal but stable. She's been very kooky and vocal all day. She did have a bit of a crying incident during speech, but she made it through. She had PT afterward and did a little better with that. She's been having a lot of bowel sounds all day...her tummy is definitely giving her some grief! I helped her go before OT and poor girl, she's a clencher! I don't know how she can clench in loose poo like she does, but she can! And you know holding it in like that has to cause major tummy cramps! Ugh. Wish she would listen to Elsa and just" Let it Go"! Tonight she was still pretty kooky. And still sounds congested but tonight when I used the nose sucker on her, I got nothing (a big difference compared to yesterday)! Hoping she'll sleep tonight but not holding my breath!

Sunday, April 12, 2015

Sleepy, moany day

Reagan had a weird sort of sleepy day today. She slept in this morning and didn't even get out of bed til 11am! She had a pouty lip and even a few tears (no crying just tears) when she first woke up but managed to hang in there. She wasn't awake for long before dozing back off. She was very congested today, but still trying her darnedest to breathe out of her nose! We've all had runny noses the last couple of days but today it was at it's worst for my girl. When she would wake up, she was in a half awake/half asleep state. She was moany and would keep her eyes half open. A lot of swallowing and smacking her lips...I think the sinus drainage was driving her nuts! She honestly spent the majority of the day asleep, and when she was awake she was ify. Hoping she can hang in there and have a decent day tomorrow...I'm not really sure what to expect!

Saturday, April 11, 2015


Reagan slept well again last night and woke up this morning a sweet smiley girl. She's been pretty precious today! Very smiley and sweet. We took a little drive this morning to go pick Daddy's truck up from the shop (he dropped it off while he was out of town). We made a pit stop for some unneeded calories at the famous Round Rock Donuts. I think I was in a sugar coma for most of the day. When we came home, everyone was a little worn out. Reagan, Ryan, and I all took naps this afternoon (while Daddy watched golf). Rarely are both kiddos sleepy at the same time! It was nice! Reagan actually took an extra long nap...I eventually kinda had to force her awake. She did finally wake back up though and was super bright eyed and precious! It's been a really great day for both kiddos! Love it when everybody is happy!

(Spoke too soon...putting Ryan to bed tonight was hell! Not sure what was wrong with him but he just kept crying and asking for Daddy! Ugh. Hopefully he's not getting sick or anything!)