Saturday, September 30, 2017

A great day for a walk!

It was a great day for a walk. Today was the 2017 UMDF Central Texas Energy for Life Walkathon! It was a beautiful day. Cool with a nice breeze. Reagan was in a great mood. All was good. We were missing some friends and family this year which I was bummed about, but we still had a great turn out and we couldn't have asked for nicer weather. Reagan's little friend Carley and her family came, so that was super special. She helped me push Reagan the entire, so sweet. Reagan had lots of Aunts and cousins there to cheer her on as well. My sister and her husband drove all the way in from Dallas just for the walk and his Aunt who lives in Austin came to see Reagan as well. Her nurse Tina and her Occupational therapist (who has worked with her for over 4yrs now) came as too. Lots of love for our girl. Most of us went to a nearby Panera Bread for lunch and took over a huge section of the restaurant! We aren't always able to meet up after a walk and it was nice just to have a little extra time to hang out with everyone. Reagan was great the entire time. She had some slight noise sensitivity but she just kept her headphones on most of the time and she was fine. I did find out once we got home that I had shut off her pump probably right when we first left the house this morning and forgot to ever turn it back on! So she went the whole walk and lunch without getting any formula. Ugh. Mommy fail. She'll definitely be short on volume for today. I don't know if I'm imagining things but it sure feels like she may have already put on a few pounds since switching formulas. The rest of the day we all just lounged around. Mike is getting over some sort of sickness, Ryan still has a runny nose, and I'm just feeling really run down and tired. Hoping I'm not getting anything and that Reagan can avoid any sickies. Sweet girl. So glad she had a good day.

For anyone that still wants to donate to Team Rallying for Reagan, it's not too late. Follow this link to her fundraising page...

Friday, September 29, 2017


Reagan slept well last night and woke up today feeling so much better. Whew! Glad that only lasted a day. Tomorrow is the Central Texas Energy for Life walkathon so I sure hope she's feeling up to it. No therapies and no nurse today, I didn't get much accomplished but my girl and I did get to spend some quality time together. She has been super gassy today. Toots are still super stinky. Unsure whether that is just due to the new formula or the antibiotic she was put on? Only a few more days on the antibiotic so we'll see. I did hook her up to the vent quite a few times today because her belly just looked distended and I got a ton of air out (not sure that antibiotic is working). Hoping for a good day for my sweet girl tomorrow.

Thursday, September 28, 2017

Sleep and pain

Reagan slept well last night and then just kept sleeping this morning as well. Still nurseless, I had time to give her all of her medicines AND thoroughly clean my kitchen today! That's a first in a long time. She missed both PT and OT. She did wake up right around 1:30pm but she didn't wake up happy. Something was definitely hurting my girl. I was able to get her up, change her diaper, and give her some medicine that helped her to fall back to sleep. It only lasted 2-3hrs before she'd wake back up crying again. Thankfully she responded well to pain medications today. That's not always the case. Hoping she gets over this quickly. Poor girl. Praying she can sleep tonight and wake up feeling better tomorrow.

Tuesday, September 26, 2017

Nurses needed

Reagan definitely slept some last night. I heard her off and on making noises throughout the night, but then I'd look at the monitor and she'd be still and quiet once again. Both she and her brother were up and at em before we were ready to get us this morning. She's been in a pretty good mood today. A little less vocal/kooky and a little more calm. Not nearly as much hand in the mouth today as we've been seeing that was good. Still holding pee a little, but going on her own for the most part...just when she's good and ready. Lots of stinky gas. Not sure if that's due to the new formula or the antibiotic she's on...or both. She had PT this morning and did a good job actively participating. Then she had OT this afternoon and did a good job with that as well. Today was our only day of nursing this week. Ever since our other nurse left to work in the hospital, our nursing agency has not sent a single person out. We've actually decided it's time to just switch companies so we'll be doing that sometime this week. The new agency has already sent out quite a few good candidates so I'm hopeful this is for the best. It's just complicated because we do have our Tuesday nurse we want to come along with us. Hoping everything works out. It's been a stressful few weeks trying to be a full time nurse/mommy. I need a vacation! Tonight Reagan was super precious. Very rolly, moving and squirming all over the floor. She did seem to have a touch of nausea, so I eventually moved her back to her chair to get her upright. I did notice tonight that while sitting in her chair her back was sweated wet, her hands were cold and clammy, and her cheeks a bit flush. Seems to be a bit of temperature dyregulation going on. Hoping she can keep it together and continue having good days. We're on our own for the rest of this week.

Monday, September 25, 2017

Lost days

I don't remember much about today. Today was one of those days that I didn't get around to blogging about right away and went back later and tried to remember and just couldn't. As much as it kills me, I just haven't been able to keep up with the blog every day as I always have. Having two very demanding kids and no nurse lately has really done me in. I'm going to go ahead and give myself a break and just skip days as needed and hopefully go back later if I can and update. If I can't, that's OK too. My memory is failing me (old age) and I'm unable to recall those days that I didn't have time to document right away. And that's OK. But I will go ahead and publish the blogs I've been hanging onto and hopefully fill in some of the blanks! Thanks for your patience and checking in our girl!

Sunday, September 24, 2017

Super tired Sunday

Mike was up early to go fishing...unfortunately, so was Ryan. Ryan came to my bed around 5:30-6am wide awake and raring to go. I was hoping he'd just lay down beside me and go back to sleep, but that didn't happen. The next thing I know he was grabbing my cell phone and going down the stairs. I laid there for another 15min or so until Reagan woke up and was super vocal and ready to get up. I've been very tired all day today. Not sure if it's because of my early risers or something else. Hoping I'm not getting sick. The rest of the day is a blur. My girl has been good so I have that to be thankful for. Hoping for a good week next week...especially since we will only have a Tues nurse!

Saturday, September 23, 2017

Mini visit

Reagan slept well and woke up in a pretty good mood. A little vocal/kooky but good enough for us to give it a try to go see the mini horses in downtown for their 10yr celebration (I saw last week in my timehop it's been exactly a year since our first visit with the mini horses). Brother seems to be fully recovered as well (even his fever is gone), so hopefully he's not contagious and we all escaped with our health. Reagan got a little more stressed as we were loading her up into the car, but she was OK by the time we got there. We got to see a couple of new horses, Emily & Fiona, both super cute. Ryan initially didn't even want in the picture. We were talking about going to see them the whole way there and somehow he got it in his head that we were going to see Santa's reindeer. So he was both a little shy and disappointed when we tried to get him to pose with the mini horses! Reagan was good though and we snapped a few quick pics of her. Then we let Ryan play some of the little games they had set up. We did manage to get Ryan to go back over and take a few pics with the horses. At this point the sun started coming out and it was beginning to get hot. There really wasn't much more for us to do so we took a quick pic of the kiddos in front of the I love you so much sign and then loaded back up into the car. While we were there, we drove around the lake a little so mike could scout some good kayaking spots for his proposed fishing trip in the morning. Then we made it back around again and stopped to pick up burgers from hopdoddy before driving back home. It was a nice little outing and everyone held it together better than expected.