Not sure how well my girl slept last night. She was pretty restless...and so was her brother. Unfortunately, brother woke up this morning on the cranky side, running a fever and with a nose running nonstop! Poor thing. You've never seen something so pathetic! I've given him pain reliever off and on all day today. Meanwhile, Reagan has been good, but there are some things that are definitely a bit off with her. Her body has been tense and temperature control has been way off (sweaty back, cold clammy hands and feet). I'm nervous about our photoshoot scheduled late tomorrow afternoon. The photographer specifically said this was the only day available to do it and there would be no rescheduling! Please keep it in your prayers that both kiddos are able to get some sleep tonight and wake up feeling happy and healthy (or healthier) tomorrow!!
Saturday, May 18, 2013
Friday, May 17, 2013
Reagan slept well last night and woke up sweet and smiley again this morning. She woke up with a bit of a crusty nose and a little congested, but otherwise good. She had PT early and she worked on sitting balance, on the swing, and she was doing really well with her head control. At the end her therapist put her AFOs on and put her in the stander. Everything was going smoothly, she was happily looking at her iPad, when I noticed a problem. Her AFOs were on the wrong feet! In her therapist's defense, these current AFOs aren't the greatest fit, so it's not really easy to distinguish the left from the right! We immediately took her out and took the AFOs off and her feet were really red (I guess her feet can tell the difference better than we can)! She needed to come out of the stander anyway...that little bit of gravity helped her to finally have a dirty diaper (yeah)! She got a little sleepy for a bit, but she never really dozed off. The rest of the day we just took it easy. It was another good day for my girl. Hoping and praying for a couple more! Her hands and feet were cold and clammy today and she had a bit of the bad day smell, but she's been wonderful so I'm keeping my fingers crossed. Tonight she's definitely restless (so is her brother). She fell asleep on my lap and was very jumpy. After laying her down, I've been watching the monitor and one minute she'll be moving with eyes wide open, and the next, she's completely still and asleep! Of course she'll be restless tonight...no night nurse! I just left her room...she was tossing and turning...she had leaked through her diaper and her pants and bed were wet! She's dry now, so maybe she'll settle down and sleep better. Please continue to keep her in your prayers (I'm going up on the calories in her formula tonight...we're up to 27.5kcal/oz)...come on good days!!!
Thursday, May 16, 2013
Reagan slept well last night and woke up this morning right around 7am. Perfect timing...gave us plenty of time to get her changed and into the car so we could head in for her opthalmology appt. Since this is probably her last visit (before moving), they went ahead and dilated her eyes so they could do a thorough exam. Everything was about the same (as her last visit in October), but her prescription did change a tad. Nothing major, but if we need new glasses at some point, we'll probably get it changed then. Reagan was such a good girl, although she did vocalize a bit while they were putting drops in her eyes! We missed all of her therapies this morning (and she took a little nap instead), but she did still have PT this afternoon. It was such a nice day today, we decided to go outside and take her tricycle for a spin. She seemed to enjoy it, but her head control was definitely lacking today. Tonight I got away for a mito mom's dinner while Daddy watched both kiddos. They both behaved, but Reagan was little more high strung as the night went on, so not sure what to expect out of her tomorrow. Still hoping for the best on Sunday for our photoshoot! Come on good days...
Wednesday, May 15, 2013
Reagan slept all night last night and woke up a sweet girl again this morning. She had vision therapy this morning and the therapist brought her 4yr old and Reagan really seemed to enjoy interacting with her. She had a great session...boy are we going to miss our vision therapist! On the moving front...we're still looking at moving sometime this summer (probably July)...but it looks like we're going to be moving to Austin (instead of Dallas). My Dad/Stepmother and stepsister & fam all live in Austin and we've always wanted to move there, but I'd be lying if I didn't say that I'm sad to not be moving closer to my mom. Well, we will be closer, 4hrs instead of 5, but 30min would have been so much better! Anyhoo, so that's about all we know right now. No definite dates or plans just yet. Have packed a couple boxes, but I have an entire house to do so that's a little overwhelming! Back to the day at hand...Reagan had a good one, but a little on the sleepy side again. She dozed off around 11:45am and then slept til 4pm (she missed school). Her speech therapist needed to come late today, so that worked out perfectly. No real eating today, just licking on a butterscotch lollipop...she's been a little chokey, coughy the last couple days. I'm wondering if she has some sort of allergies/sinus drainage going on...even her brother has been a little sneezy today...so maybe? She sure has been a sweet girl though. Hoping (and praying) she continues to have good days. Early morning opthalmology appt in the medical center tomorrow morning...should be fun.
Tuesday, May 14, 2013
Reagan slept well last night (much better than previous nights) and woke up this morning right around 8:30am. She was sweet and smiley...so that's always a good sign! She had OT at 10am and she was doing well with that, that is, until she fell asleep! She continued sleeping until 12:10, when we had to get her changed and into the car for her hair appt. She woke up smiling as soon as we started messing with her. She did well for her hair cut. She was a bit squirmy, but OK (not a huge fan of the blow dryer though). Her hair turned out cute! It's a little longer than previous cuts but that was on recommendation of the hair stylist. Reagan's hair is starting to get a bit of a wave in it (like her mommy...poor her), and if she cut it too short, it would really wave and be unruly. I think it looks cute. It remains to be seen how well it's going to behave! (But we could say the same thing about Reagan and Ryan!) Ryan got a little touch up to his hair and he looks cute as well! Reagan fell back to sleep shortly after we got home. Who knows, maybe this was her sleepy day! While sleeping, I took advantage and painted her little toes again! We've got a photoshoot this weekend, so she had to have her toes touched up! She woke up around 8:30pm and was awake until 10:30 or so when she dozed back off smiling! She sure has been a sweety today! Save some of this sweetness for the photoshoot Sunday Reagan!!!
Monday, May 13, 2013
Reagan was a good girl today. She didn't sleep super well last night...she was very restless and I got up to cover her back up a couple times (and she was wide awake)...but she was sweet and smiling. She's had a good day today. Still a little tense in her body, but her overall demeanor seems much better. Lots of smiles, lots of laughs (sometimes crazy laughs). The only thing she had today was school this afternoon. She was very attentive and did a great job! Not much more to report. She has her rescheduled hair appt tomorrow...time to cut that hair off again! I'll leave you with this, a gift from the best mom and grandma anyone could ask for (Happy late Mother's Day mom)!!!
|Hope Park is a special needs inclusive park that they just built in Frisco TX.|
|Grandma bought a brick for her Reagan!|
Sunday, May 12, 2013
Reagan slept well last night and then woke up this morning serious. The crazy laughs came later and were abundant tonight. She had a pretty good day today. More happy, less tense...that is, until tonight. This afternoon she had two dirty diapers, so I'm pretty sure that had something to do with it. I think tummy pains are at the root of a lot of her problems. Tonight she was laughing and she sounded happy. Then her laughs had a touch of whine to them. Next thing we know, she's this close to tears! I gave her some Lortab and that seemed to take the edge off a little but then she started getting agitated again. She finally dozed off in my lap. Poor girl! She can't catch a break. So many good days and now so many off days!