Tuesday, October 31, 2017

Happy Halloween

It was another great day for my girl. She had only one therapy today, OT this afternoon, but she did really well with it. Her therapist brought a pumpkin for her to clean out and carve. She loved putting her hands inside the pumpkin and feeling the pumpkin goop! She also helped her therapist carve it by picking the shapes she wanted to use for the eyes/nose! So much fun! We love her occupational therapist! Grandma spent some time in the yard today making it even more Halloweeny (Ryan's word) and then making herself super scary tonight for the trick or treaters. The weather hasn't been great, rainy off and on all afternoon. Very overcast and misty...Halloweeny you might say. We were able to get both kiddos out for trick or treating around 6:30pm. We went down our street and then came back, Mike and Reagan stayed home, while Grandma, Ryan, and I all went down another street. Ryan had his heart set on going to a little haunted house in the garage of one of the houses in our neighborhood. He was super brave until we got to the entrance and then he chickened out. Grandma went through but he would not go. There was nothing scary about it, but he chose to stay out. Then we headed home where Grandma took over the job of handing out candy and terrifying every kid that came to the door. She loves this. Both kiddos had a great night. The only downside to tonight, the Astros didn't win their game. But hopefully they'll pull it out and win game 7 tomorrow night!

Monday, October 30, 2017

Trunk or treat

Reagan had a good day today. Busy day with speech, PT, and then school/vision therapy this afternoon. Mike took off early to go with me to a teacher conference for Ryan. He seems to be doing fairly well in Kinder (despite having a bit of a rough week last week). He still needs assistance at times, but he generally does what he's supposed to do and he's not disruptive to the rest of the class, so that's good. It's of course always a challenge to keep him focused and on task, but that's no surprise. He seems to be on track with reading, math, and letters. Even his writing is better than we would have guessed, but it's definitely not his favorite. All in all, we're happy. He has some areas that still need improvement, but overall he seems to be doing well. We decided to take advantage of Mike being home early and Reagan's great mood today, so we went to a trunk-or-treat event at a local highschool. There's also rain in the forecast for Halloween tomorrow so we figured we better get the kids in their costumes just in case tomorrow is a bust! It was quite the madhouse, but Reagan was so good and didn't even seem annoyed with all of the chaos. Ryan had so much fun, pointing out and naming every costume as he saw it! He was the happiest pikachu I've ever seen (even skipping as he walked)! Sweet boy and precious girl!

Saturday, October 28, 2017

Busy Saturday

Today was another good day for my girl. Most Saturdays we don't have nursing, but this morning I ran a half marathon so thankfully we were able to get one of our nurses to pick up the morning shift. Our Tues nurse also ran the half! It was a great morning for a run. Nice and cold...although I could've done without the full sunshine toward the end (I'm used to running in the dark)! We did great though and my time was improved from last year. The rest of the day I was definitely sore. Reagan and I hung out relaxing. She seemed sleepy but never actually dozed off. Then tonight we had another nurse come work for a few hours so Mike and I could go to his work friend's Halloween costume party. We were "Astros Fans"...and unfortunately our Astros lost their game tonight. Very depressing. Other than that, we had a great time! Both kids were well behaved, Ryan for Grandma and Reagan for the nurse. Reagan even dozed off on her own around 9:15pm! We weren't out too late, but it's been a long day and we're all exhausted! Hopefully both kids sleep well tonight!

Friday, October 27, 2017

Much better

Today was a much better day for Reagan. She slept well last night and when she woke this morning, it was apparent today would be a better day for my girl! She's been pretty laid back but a little kooky vocal at times. Happy to finally have her hands back after two days of arm restraints! We did notice a big scratch on her nose this morning, some of the velcro on the arm restraint must've gotten her! Poor little nose! She's been happy to just take it easy and relax today. No therapies, no real plans. Grandma came in so she was happy to see Grandma! She was also making really great eye contact today. So glad to finally have my girl back. Ryan had field day this morning at school. He enjoyed himself and only had a few little mishaps. He wasn't happy about losing the running race. The next time around, he ran into the other kid's lane and wouldn't let him pass! 😝 I'm glad I was there to lend a hand with him. He wasn't happy when I had to leave, but he was super happy to see Grandma at pickup! Hoping for a great weekend!

Thursday, October 26, 2017


Reagan slept well until 4:30am when she woke crying. I was in there with her about 20min with her screaming, flailing, and fighting until I finally got her back to sleep just before 5. Within seconds of me laying back down, she woke up crying again. This time Mike got up with her and she fell back to sleep almost right away. She continued sleeping until around 7:45am or so when she woke up crying once again. Today was pretty similar to yesterday, when she was awake, she was for the most part miserable. She was also holding her breath today when she was crying. Today it was really obvious that these pain episodes were coming in waves. She had several instances today where she was calm and almost smiling, which gave us hope she was turning a corner, then the next thing we knew she was crying again. My poor girl. It's so rough seeing her like this. I just want her to be better.

Ryan and I went by a pet store after speech therapy today and they had a huge tortoise roaming around the store! We'll definitely be back! The fish were his favorite.

Wednesday, October 25, 2017

Very bad day

Reagan did finally get some sleep last, unfortunately, that's the end of the good news. It started when the phone rang at 5:30am. Always a bad sign. Our nurse had called in sick. Then Reagan woke up around 7:45am crying. Not good. Thankfully she went back to sleep with some medicine. I was very careful to not wake her as I gave her all of her regular morning medicines. I was hoping she would wake up feeling better, but that didn't happen. She woke back up around 12:30pm crying again. She was miserable all afternoon. The medication wasn't working as well and would only help her an hour or so at a time. Ugh. My poor baby. It was a rough day. She had to wear arm restraints most of the day because she was so bitey and clawing at both me and herself. Her arms and legs would tremor, they were so tensed up. It was brutal to watch. Finally tonight she seemed to be a little easier to settle down and get back to sleep. Hoping that means she'll actually get some sleep tonight. Praying for a much better day tomorrow for my girl.

Tuesday, October 24, 2017

Girl needs some rest

My girl didn't sleep much again last night. She fell asleep beside Daddy, but when I went to hook her up to her formula, I couldn't find her tube and digging for it woke her up! Ugh. I don't think she really went back to sleep. Maybe for short periods of time, but in general, I think she was awake. She was quiet though, so we were able to sleep. She's been in a pretty good mood today. A little more tense/serious, but content. She had OT and school and did well with both. She took two little cat naps but only for about 5-10min each. In general she's been awake and alert. Tonight she was rolling all over the floor; we couldn't keep her contained! She has to be nearing the end of this sleeplessness cycle...it's been 4 nights with very little sleep. Poor girl. It's starting to wear on her and you can tell (especially in her eyes) she just needs some rest. Really hoping tonight is the night.

More cute pics from Ryan's shoot...

Monday, October 23, 2017

Another good one, but still no sleep

Reagan didn't sleep again last night. Less talking, but still not much sleeping. She woke up in a good mood. Her body seems a little more tense today. She's been good but does seem a little neurologically off. A little sensitive in her eyes again. She had one instance of laughing with her head turned to the right and eyes fixed to the right, that seemed suspicious of seizure activity. The rest of the day she was good. She had great sessions of speech, PT (she got in her stander), and school. Busy day and we even squeezed in a bath before her nurse left. Sweet girl. Sure hope she can get some sleep tonight. She's looking sleepy but who knows.

This girl, she kept flipping herself over like this and getting stuck! 

Sunday, October 22, 2017

Still sweet but not sleeping

Sleep was about the same last night. My girl was up and talking most of the night. Keeping us awake. I guess if she can't sleep, she thinks we shouldn't either!?!? Her brother was up again early, so the two of them watched Turbo the snail movie again. So cute. Reagan in her chair, Ryan on the bean bag chair beside her. Just adorable. Love these two! Reagan had another really great day today. Super precious and smiley. We all just took it easy most of the day (that is until I ran 10 miles tonight). Sweet Ryan tried to stay up until I got back...I found him dozed off on Mike's lap. Reagan was still going strong though. Eventually I gave her clonidine to try to help her get to sleep but I'm not super hopeful. She seems to be on one of her no sleep patterns. Praying for some Z's for my girl tonight.

OMG...could they BE any cuter?!?! 💜

Saturday, October 21, 2017

Super sweet

Reagan did not sleep well last night. She was up and talking a lot throughout the night. In a great mood...just awake. Both she and her brother were up early this morning and raring to go. Mike and I were exhausted and dying to sleep in a little, so I put on a movie for them (my neighbor loaned us Turbo which really held their interest) and they were entertained while we were able to sleep in a little longer! Ryan is in love with this movie. Reagan seemed to enjoy it too. The two of them watching tv together was just too cute. After I got up, I noticed Reagan was a little sensitive in her eyes this morning. She was laying on the floor and I held her snake up in the air above her trying to get her attention, then I noticed she started blinking, the next thing I knew her left arm stiffened out (up above her) and her head turned and was fixed to the left. Her eyes were fixed to the left and upward. This lasted 1-2min. Her arm relaxed (and she even put it back into her mouth) long before her eyes became responsive again. She came back to and was fine. Still just as happy as can be. I have to wonder if this seizure activity might be related to her hormones. We definitely need to keep a close eye on her for the next month or so. Other than that, she's had a really great day today. She's been super precious. More laid back and smiley than she was last week. Super sweet. Hoping this continues.

Friday, October 20, 2017


Reagan did not sleep much last night. She was very vocal and kept talking and carrying on all night. She was in a good mood, but not sleeping. She woke up with a surprise. Not to get too graphic but a clear indication that she has started puberty! It's something we've been waiting for a while so we can attempt to control those hormones that we believe have been causing break through seizures. We're going to watch her over the next month or so and then talk to her Dr about the next step. Thankfully we didn't see any seizure like activity today. She's been a sweet smiley girl all day today. Vocal and alert (hands in the mouth) one minute, then looking sleepy and very still (hands out of the mouth) the next. I don't think she ever really dozed. Just looked like she might. She's been a little sensitive to us talking, singing on tv, and air blowing on her face...but otherwise she's been very calm and content. Hoping for a good weekend for my girl this weekend. It was so nice to finally get some real smiles out of her today.

Thursday, October 19, 2017

Tense but good

Reagan had a good day today. She's still pretty tense in her body, but she's otherwise been content. She had two therapies today, PT and OT and did great with both. We did get her back up into her stander today and she tolerated it really well. On Tuesday her body wanted to shift to the left a little (something we've noticed quite a bit in the stander) but today her therapist was able to move one of her side supports over a little to just give her a little more input allowing her to bear weight evenly on both legs. Tonight Mike and I got out for a very rare and much needed date night, thanks to Grandpa and finally having a Thursday night nurse.

Wednesday, October 18, 2017

Still not smiley but good

Reagan slept well last night and woke up this morning around 6:30am. She's been pretty easy going today. Still a little tense in her body, but pretty relaxed in her mood. Still no real smiles, but lots of half smiles today. She only had one therapy today, speech, but she did really well with it. The rest of the day she just hung out with her new nurse Terri. Not a super exciting day, but good nonetheless. My girl even dozed off on her own tonight just before 10pm. That's early for her. Hoping to get some real smiles from her tomorrow. Ryan was particularly challenging this morning and I was worried how his day might go at school. He got a perfect report yesterday, so I held out some hope, but as expected his sheet had multiple notes added to it (not following directions, not keeping hands to self, throwing paper, and taking toys from others...not good). It was funny because when he got home today he immediately wanted a toy as a reward for good behavior, but the second I grabbed his backpack, he started saying no! He knew what that sheet was going to say. He's something alright. Needless to say, no toy today. Maybe tomorrow. They did release two pics today from his Kelly's Kids shoot last week. So super cute! The whole collection releases tomorrow! Can't wait to see more pics of him! He's trouble but he sure is cute!

Tuesday, October 17, 2017

Just a little bit stressed

Reagan slept well last night but woke up a little stressed. I wasn't sure how her day would go. Thankfully she pulled through and had a pretty good day today. She's had a lot of gas and air in her tummy today, so that could be making her a little uncomfortable. No therapies or anything going on this morning, so she just took it easy. Then this afternoon she had OT and fell asleep at the end of the session. She took a little cat nap and woke up in time for school. She was good for her teacher and then we gave her a bath. Her shark tooth (the one that still hasn't fallen out even though her other tooth has been all the way in for months) has gotten especially wiggly today and it seems to be bothering her. I tried to give it a little help and she even got very still and let me mess with it, but it's just not budging quite yet. Half of it is very loose now, but the other half, not so much. She's doing her best to yank it out with that hand constantly in her mouth. We did notice some blood and thought it must be coming from her loose tooth, but she's got a little cut on the inside of her lower lip that's the culprit. Not sure if it's from her hand or just being dry. Poor girl. And that left hand is so SO red from being in her mouth. She's a trouper though. You can tell she's frustrated and wants to get upset or fuss, but she's held it together all day today. Hopefully tomorrow is an all around better day for her.

Monday, October 16, 2017

Great day

Reagan had a great today. It didn't start off too great...I found her laying in a formula soaked bed this morning. Not sure what happened. Her tube was closed, nothing had disconnected, but something leaked all over the place. My guess is her stiff/old extension put pressure on her button and caused it to leak right at her tummy (she's also been super grabby with her tube lately, so that could have contributed as well). It was a mess. This new formula is darker so it seems to stain a lot easier. We've already got one stain on her sheets that won't come out. Everything from her bed had to be stripped and her clothes changed out as well. Thankfully her nurse was here bright and early and we were able to tackle it together. Reagan ended up having a really great day for therapies today. She had a good session of speech, followed by PT where she got up into her stander, and then school/vision/speech this afternoon where she got to play with all sorts of fun Halloween things! She did great with it all. She's still a little congested today so we've used saline in her nose off and on. Ugh. Hoping we'll all get over this stuff soon. My throat has been killing me all day. Tonight my girl fell asleep all on her own on the floor, shortly after I helped her poo. This new formula has definitely changed the frequency and consistency of things down there. I guess real food will do that to you.  Not necessarily a bad thing, just new for her. Everybody poops. I think that's the name of a book...

Ryan got some tennis lessons this afternoon! He loved it (for about 5min)!

Sunday, October 15, 2017

Snotty and snorty

Reagan had a pretty good day today. Mike went fishing (this is his new thing to do on the weekends instead of golf) and the kids and I just hung out. I gave Reagan a much needed bath this morning and then we watched a lot of cartoons. Reagan was pretty laid back and easy going today. Still not smiley, but content. This afternoon Ryan and Daddy went and bought a soccer ball. Ryan is signed up to play on a YMCA league in January so we figure we better start preparing him now! He seemed to really like it...for 10min or so. That's how he is with everything. He's good for 5-10min and then it's the constant "are we almost done" or "are we done yet"?!?!? Just hoping he outgrows that one soon. Reagan (and all of us for that matter) is still pretty congested. I'm not sure if this is just allergies or if we're all fighting some sort of respiratory virus. I'm ready to be done with it though. Enough snot already! Ryan has been sorting and making horrible sounds like an old man clearing phlegm from his throat for the last couple weeks and it's getting old. I'm sure the teacher and kids at school love it. Here's to a less snotty day tomorrow...

Saturday, October 14, 2017

Awake and better

Reagan slept well last night and woke up this morning in a much better mood. She wasn't smiley and happy, but she was content and not crying, so we'll take that. She was definitely a little on the tense side this morning and had a few moments that looked like she wanted to cry but she held it together. She was super snotty this morning. Lots of snot and congestion. We were doing a lot of wiping this morning. She did loosen up as the day went on and this afternoon she was pretty laid back and seemed a lot more content. Tonight she even dozed off on her own (and was snoring up a storm)!

Friday, October 13, 2017


Reagan slept in this morning (finally my girl got some solid sleep). Her nurse waited until 11am or so to change her, but that woke her up. She didn't wake up happy. She was fussing/crying almost immediately. She eventually calmed down a little but started crying again. Her nurse gave her some pain medicine and she was able to go back to sleep. She stayed asleep the rest of the day (thank goodness). Hoping she'll sleep tonight and wake up feeling better tomorrow.

Thursday, October 12, 2017

Serious but calm

It was another night of questionable sleep for my girl. She was in her chair and quiet, but I'm not sure if she got much sleep. She was asleep when I went to bed, but was awake when I got up early to run. She was also still nauseous this morning. I really think the nausea is due to her sinus drainage opposed to her GI system itself. Her nose has been running like crazy today. We've been giving her saline and sucking her nose all day trying to give her some relief. Poor thing. She's been a trouper though. Only one therapy today, OT, but she did well with it considering all she was dealing with. She's been very calm in her body today and very serious/quiet...but content. Finally this afternoon the nausea seems to have improved. Hopefully we're done with that. Sweet girl really needs to sleep in her bed tonight.

I took Ryan to the aquarium today...his favorite. The stingrays!

Reagan's cool fiberoptic toy. I just figured out that it vibrates and makes these little circles...I was mesmerized! ;)

Wednesday, October 11, 2017


I'm not sure how much, if at all, my girl slept last night. She was still moving around at 1:30 so I went in to check on her. She immediately started gagging. Ugh. Where did that come from?!?! I moved her to her tomato chair and gave her some clonidine. I was exhausted so I crashed. This morning she was in good spirits but still very gaggy. Lots of mouth movements. She's been a little congested and has had some sinus drainage today so I wonder if that's the cause of her nausea. I know that drainage down the back of my throat makes me feel sick to my stomach. Poor girl. She's been so sweet and smiley, but gaggy most of the day. She had speech, PT, and school/OT today and did really well with all of them all things considered. Prayers that this nausea goes away and my girl is able to get some sleep tonight!

Ryan had another modeling photoshoot today! This one was a Christmas shoot! So fun!