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!
Wednesday, March 14, 2018
Reagan has had a wonderful streak of 10 good days in a row! That's the longest streak in a while (the last two were only 5 and 4 days). She was super calm early last week, then had several super vocal/kooky days with increased tone, then the last two days she was very calm/serious and then today she woke up crying. Ugh. It sure was nice while it lasted. I'm really hoping she pulls out of this quickly and wakes up tomorrow feeling much improved. She's been pretty miserable today. Pain medicines are only helping for 2hrs instead of 4. Staggering helps, but sometimes still falls short. Sweet girl. Her mouth and lips are all dry. Her left hand has a crack along the knuckle that we're having to keep bandaged (too much time in her mouth the last few days). Please keep my girl in your prayers. Hoping for a quick recovery!
Saturday, March 10, 2018
This morning Mike went fishing while the kiddos and I hung out. Reagan got in some new clothes I had ordered for her, so we played dress up. The company Wildflowers Clothing is a new sister company of Kelly's Kids (the company Ryan has modeled for). There have only been a few releases, and this was the first one that we have seen. The stuff is ADORABLE. So well made and detailed, I loved it all. And the fabrics...SO soft. It's girls only, so lots of dresses and everything is maximum cuteness. The way you get them is through consultants/pop up shops that they have, where you can see the different pieces and then create a wish list. The consultant places your order for you at a later time and you get what happens to be still available. You have 2 weeks to try it all on and then return what you don't want (free return shipping). So now we must make some difficult decisions...please comment below with your favorites (I'm a terrible decision maker)! Just a side note, my model was not super compliant today. Very high tone and rolly and wouldn't let me fix her hair...messy hair, don't care!
This first outfit is a top and pants...the top I LOVE is the softest poplin with ribbon detail and the pants are ridiculously soft/stretchy jersey. Although the top flairs out, it was still a bit of a challenge to get on this tight armed girl. Once on, it seemed to fit well.
The second outfit is a top and pants both made out of the stretchy soft jersey. I like the horses on this one and the coordinating, yet different patterns.
The third outfit is a dress and leggings. This originally was probably my least favorite (as I'm not a huge fan of the orange flower pattern) but the fit of this dress is just so cute and the pattern on the pants/top of the dress...pretty darling.
The forth outfit is probably one of my favorite dresses EVER. This dress and leggings is just beyond cute. The rainbow fabric, with the lemon fabric, and the cut and trim on this dress...I love it. It however is not practical for Reagan. It has a beautiful open back, but is a little loose in the top in the front. I SO wanted this dress for her, but she would probably only wear it once for a photoshoot and then never again, so it's not the most practical purchase.
The last is a super cute tank top. I didn't get any pants to go with this, so we just tried it on with some pants she already has. I loved this, again it's super soft jersey, BUT it's a size 14 and it still looks small/short (most of the other things I ordered were plenty big in a size 12).
We also got a few more pieces that I will include for you to see, but these lost out to the others and didn't make the first cut (so we didn't even try them on).