Today we were nurseless again. With 4 different nurses covering 5 days, there's always something! Thankfully Reagan was a doll today. She's been such a sweet heart. Super laid back and calm. Actually, maybe even a little too low tone. She's been having issues with choking on her spit today. She's also been pretty congested and runny nosed. Everyone seems to have a case of the sniffles lately. Not sure if we're getting something or if we're all just reacting to the ridiculous amount of florescent green oak pollen floating in the air. YUCK. I hooked her up to a drain not really expecting anything to come out and it's been almost a constant stream or air or fluid! Some of the fluid looks a little gunky/thick (maybe snot?). Poor girl. Hoping she feels better by the morning. We're set to leave here bright and early at 5am to head to Houston for the 2018 Energy for Life Houston walkathon! It's gonna be a crazy one. The high today in Austin was 83 degrees, it'll be in the 40s by morning. It actually looks like this front will follow us all of the way to Houston. We will be driving through it the whole way. I keep hoping maybe they’re off in their predictions and that it will speed up so we're not walking in the rain! Ugh. Not too thrilled about getting up that early to drive all that way, but REALLY not happy about the weather situation. What I am happy about is getting to see some of our Houston friends and family and eating breakfast at a place we used to go to nearly every weekend when we first got married! YUM. Hoping everyone is good tomorrow and we have a safe trip. Please keep us in your prayers. If you'd like to donate to the UMDF in Reagan's honor, please follow the link to our team Rallying for Reagan!
Friday, April 6, 2018
Sunday, March 25, 2018
Reagan had a laid back day for the most part yesterday. She did wake up a little serious and had a seizure shortly thereafter. Ugh. I really wish they would just go away. The rest of the day she was very laid back, but just a little sensitive/startley. Definitely neurologically off. But calm and quiet. Then tonight she started getting spitty, then chokey, then gaggy. Double ugh. Not good. Especially at night right before bedtime. Mike was able to lay down with her and eventually get her to stay asleep. I think laying on her side helped. I switched her over to pedialyte for overnight. I wasn't super confident we'd get much sleep last night (esp since we didn't go to bed til after 2 and 3). She was back up around 6:30. Not really gaggy but spitty/chokey so I moved her to her chair. We slept in. Today has been pretty similar to yesterday. Very sensitive/startley. Serious. I did get a few kooky laughs, not much but I'll take em! Not sure what to expect for tomorrow. Hoping we're not trending in the wrong direction. Sweet girl. Praying for a better night tonight.
Wednesday, March 21, 2018
Today was our precious girl's 11th bday! It's hard to even believe it. In the world of special needs parenting, especially kiddos with metabolic/seizure disorders, you just never know how many birthdays there will be. Reagan is SUCH a fighter though and she has proven so many doctors wrong. We are so blessed to have our girl here with us and thriving (minus the bad days). She had an amazing birthday today. She woke up in a wonderful mood and she's been all smiles, all day! She had a super busy day today. This morning she had speech therapy as well as a visit from her all time favorite nurse Megan and her baby (who is now a toddler). Reagan had her eye on him the whole time as he investigated all of her toys, but she was all smiles for her beloved Megan! She ate some food during speech (as she did on Monday as well), but today she wasn't quite as coordinated with taking bites. She still enjoyed it, I think. After a nice visit with Megan, we loaded up into the car and headed to horse back riding. A special bonus today, her friend Carley missed lunch/recess at school so she could come and watch Reagan ride! It was so amazing to have her there and you could tell Reagan was quite happy about it. Reagan did a great job today, her best ride ever. They say she is gaining strength and each session is better than the next! It's really an awesome thing to see. So glad Carley's mom Meredith told us about this place (Carley takes lessons there and Meredith volunteers as well)! Carley also gave Reagan a super sweet gift. So thoughtful. We are so thankful to have Carley in Reagan's life. She's such a sweet girl. We are actually trying to plan a little trip with both girls to Morgan's wonderland or Natural Bridge Wildlife Ranch in lieu of a party this year. More of a big girl birthday this year. Afterward we made a quick stop at the cupcake shop for some birthday cupcakes and then came home finding a huge birthday balloon bouquet on the front porch from Grandma! We did a quick bath to wash all of the horse off, then it was off to pick up her brother from school so we could go to the aquarium. Both kiddos always seem to enjoy their time there. Next we headed back home and my dad and my step mother came over to see Reagan for her birthday. Once Mike was home we all sang her happy birthday (her favorite...not) but she did well with it. She took some tastes of her bday cupcakes before Ryan and I polished them off. The rest of the night she just smiled from ear to ear kicking and grabbing at her balloons. What a wonderful day for our birthday girl! Big thanks to everyone that made it special!
Monday, March 19, 2018
Today was another bad day. It's both a good and a bad thing. The bad is obvious. The good, tomorrow she's got a Drs appt with the local genetic/metabolic specialist that's hard to get into and we've already had to reschedule once, so maybe she'll be better by then. Also, Wed is her birthday, so at least this will pretty much guarantee she doesn't have a bad day on her birthday. And thankfully she slept most of the day and when she was awake, even though it was clear she was miserable and not feeling well, she was more moany than screaming. Hoping for a quick recovery and a great birthday week for my girl! She's got another yearly Drs appt on Thursday as well, so it's going to be a busy week.
Sunday, March 18, 2018
Reagan was in a great mood this morning so we decided to take advantage of that and go have Easter Bunny pics done. I had signed up ahead of time for Caring Easter Bunny (before hours picture with Santa/Easter bunny for special needs kids). This was our first year to do the Easter Bunny pics. Reagan wore her new green dress (since yesterday was St Patricks day) and brother coordinated (you can't really tell but there is blue in that dress). We walked up and were able to go take pics right away as there wasn't even a line. Perfect. There was a little disagreement on which pic to choose, Dad liked this pic where she had her head up, I preferred the one where she was looking at the camera (she looked more like her cute self) but had her hand in her mouth. Unfortunately they only let you chose one now, so we picked this one. She was pretty laid back this morning, but got increasingly tense as the day went on. By tonight she was borderline bad day. Not sure what's going on, as her last bad day was just Wed (only 4 good days ago). Hoping this isn't a sign of things to come.
Friday, March 16, 2018
This week was spring break and while we didn't have any big out of town plans, I had something planned for Ryan nearly every day this week to keep him busy. It all started on Tuesday when we took an early morning trip to the Austin Zoo. It's not a typical zoo in that it's both small and a rescue zoo (all of the animals have been rescued). It's clear on the other side of Austin from us, but we headed out early and got there just after they had opened for the day. Ryan made his way through all the exhibits at record speed. His favorite thing was probably the many peacocks they had roaming around the zoo. We saw one when we first got there but then saw many, many more. He would go up to them and yell at them to open their feathers...they usually didn't listen. We got very up close and personal with a big male Lion. And spent a good amount of time in the petting zoo and on the train. I think we were in and out in 1.5hrs or so...about typical for Ryan's attention span. The following day Grandpa took him on a real train ride! The Austin Steam Train had a spring break ride to Bertram. It was a 3hr roundtrip ride and I was a little nervous he might give Grandpa some grief, but apparently he was good. The next day we went to see the movie Peter Rabbit. It was cute but didn't really hold his attention the entire time. I think because it was only half animated, but it couldn't just been his short attention span. The next day, Friday, the final day of spring break, we went to the Austin Rodeo carnival/fairgrounds with Grandpa. We got there early before the carnival even opened which was a little upsetting to him, but we were able to distract him with pony rides, the cool petting zoo, bubbles, and pig races! Then it was time to go to the carnival where we thought he only wanted to play games, but turned out to be quite the daredevil wanting to ride some much too scary rides. I got on one with him that I was terrified during, granted I'm a big baby when it comes to rides, but it was way too scary for a barely 6 yr old. He did win some toys and a FISH that we later had to go spend a fortune on buying tank/accessories. All in all it was a fun spring break for my boy. Can't wait for school to start next week and to begin the week of Reagan! Big birthday next week for my girl!