We're done with our first week of summer! Ryan started summer t-ball and soccer leagues...in the heat! Reagan finally got in the pool, even though she wasn't having her best day. This week has actually been pretty yuck for her. Most days were half ok and half not so good. Thankfully she was able to hold it together for most of her therapies and even make it to a cardiology appt (everything looks good), but not so good the rest of the day. Tonight as I type this she's super tense/stressed and all of a sudden nauseous. Ugh. It's gonna be a long night. Nothing is draining from her tummy, so I'm not sure what could be causing this (although last night we did find a bunch of formula/bile leaked onto her shirt). She seems a little congested, so maybe that's the problem? No clue. Hoping she can just sleep it off tonight. Lots of yawns right now, so that's a good sign. We've got a golf tournament tomorrow so I'm hoping both kiddos will behave themselves while we're gone.
Friday, June 15, 2018
Friday, June 8, 2018
School is officially out for both kiddos! (Sorry for the lack of updates! We've been crazy busy!) Ryan had a really great last couple of weeks of school. Doing his work, not hitting friends...we were pretty happy about that! Reagan has had a pretty good month as well. She's still doing therapeutic horseback riding, though we're about to move her time to earlier in the morning as it's really starting to get hot! Both Reagan and Ryan had graduations this week. Ryan had kinder graduation and Reagan 5th grade graduation (she's moving on to middle school next year)! Not a lot planned yet for this summer. There's sure to be lots of swimming, Ryan has been in the pool nearly every day this past month! Here's some pics to recap...
|Stretching after graduation!|
|Kinder Luau (water day)|
Thursday, May 17, 2018
No nurse again today. This should be the last day as we have found a nurse that seems to be a good fit who will be picking up this weekend and then officially starting next week. Reagan had a sleepy day yesterday. I think it was actually a "bad day" as well, because when she was awake she was very fussy. Thankfully she slept the entire day and woke up this morning super sweet! She slept in a little but woke up just in time for PT. Then she had OT followed by school and she did well with both (although she did fall asleep at the end of school). Sweet girl. It's been a great day to snuggle with my girl and look into those big giant eyes. She is SO PRECIOUS. She's been very alert, making great eye contact, giving me smiles, and pretty easy going with the hands. I'm glad we got to have a mommy and me day!
Tuesday, May 15, 2018
Last week was a pretty good week. Reagan had some good days, Ryan had another (small) modeling photoshoot and a great week at school, and Friday we had our stairlift installed! Reagan has been on an antibiotic all week for her sinus infection and while I definitely think it's helped, it has also caused major gastrointestinal upset for my girl. We are SO glad to be done with that medicine. She's also gone from being very relaxed last week, to being quite tense in her body over the weekend and this week. She's been pretty restless at night and just not sleeping well. I was just thinking the other day it had been a long time since we had seen a seizure, then pow she had one over the weekend. Monday we had a neurologist appt in Houston. We discussed increasing her Banzel to see if it helps (the levels of it in her bloodstream are VERY low since it's the same dose she's been on since 3)! So we'll see. Today she started losing tone and by the afternoon/night she was full on nauseous! Ugh. Poor girl. Thankfully she finally dozed off on her own so I moved her to her bed and raised it up a lot at the head and she seems to be sleeping pretty soundly right this moment. I'm hoping she's able to sleep the night through and kick this nausea to the curb!
|Thank God a good Samaritan came to our rescue with a stroller to|
borrow for Reagan's Drs appt in Houston! We forgot hers at home!!
Sunday, May 6, 2018
We're still here! Not a lot going on, just the busyness of everyday life. Reagan has been good, well, except for a stubborn sinus infection that we just now got antibiotics to kick. The runny nose comes and goes, but the fact that it was still thick and green finally motivated us to get her in on Friday (and the fact that the drainage was making her nauseous). We've all been battling some sinus issues, hard to say if it's a cold or just allergies, hoping we're done with that. Reagan had a good day yesterday. She was so calm and content. I couldn't stand the cuteness...I had to take some pics of her! Such a darling girl. She was super still and laid back all day, however that changed as bed time rolled around. She was getting increasingly tense, so I picked her up and held her. She calmed down and eventually fell asleep. Unfortunately she woke the second Mike tried to take her up to bed. She just got more and more upset. It looked a lot like a bad day, so we were not super hopeful on her sleeping last night or waking up this morning OK. She surprised us though, not only did she sleep the whole night through, she slept the ENTIRE day. We were really expecting a bad day today, so I have no clue what to expect of tomorrow. I'm really hoping she slept off any bad day and will wake up tomorrow feeling good.
Sunday, April 22, 2018
We've had some good days lately...exactly 17 to be exact! Well, we did have a miserable night a week ago and all day last Saturday, but my girl was sick (and wasn't technically having a "bad day"). It was rough, we all managed to pass around some sort of respiratory bug and it hit Reagan hard. Tons of thick green snot, yellow gunk running from her eyes, and nausea due to all of the drainage (and insisting on breathing through her nose didn't help). It was a rough 36hrs. She finally slept Saturday night and then woke up feeling much better on Sunday. Still sick, but not gagging and gasping for air anymore. She slept a lot Sunday and Monday and has had a pretty normal week since then (although still very congested). Wednesday we went to horseback riding and then to an opthalmology appt. We have a new opthalmologist since her previous one went on a leave of absence (all of her specialists seem to be leaving). It was a two hour appt but the doctor was in an out in less than 10min (with zero personality). She did say that Reagan's astigmatism may be making things a little fuzzy for her and we may want to try glasses again. So sounds like a new pair of frames are in her future. On Thursday we had the DME lady come out (who is also leaving), we ordered a new sling for her hoyer lift, a new bath chair, talked about getting the carseat changed out to the booster, and also discussed the new stroller we're going to be ordering. I feel like I've spent half my time lately following up about new equipment! We should be getting two new tomato chairs next week (in the next size up) and a stair lift should be coming sometime soon as well. Lots of things needing upgrading since Reagan's last growth spurt/weight gain. We also found out that our Wednesday/Thursday nurse will be leaving. Ugh. Don't get me started. The constant struggle with nursing. She's the hardest to replace because she not only worked more days for us than any of our other nurses, she worked a super late shift (so we'll probably be forced to replace her with two nurses)! Double ugh. Thursday night we noticed Reagan definitely had an increase in tone and movement. She's been super crunchy, rolly/squirmy ever since. Loving rolling onto her tummy, we're having to keep a close eye on her that she's not pulling her tube. Last night she was particularly hard to get to sleep, so I was a little worried about how she was going to be today. Thankfully she woke up smiling. She's ridiculously tense in her body, and has shown a little agitation here and there, but overall pretty smiley and sweet. Hoping we're not headed the wrong direction. While I've enjoyed all of these good days, there has been a constant concern as to when they might end. Ryan has now lost both front teeth so he's got that toothless grin going. We also made an adjustment to his ADHD medication and he's had two really good weeks in school ever since. Hoping everyone's good days continue!!!
|Horseback riding 4/11|
|Horseback riding 4/18|
Saturday, April 7, 2018
We made it! It wasn't the best of weather, a cool front was actually coming through as we were walking, but we made it to the UMDF Energy for Life Walkathon in Houston! Actually, Stacey, my best friend from high school, was finishing the 5k just as we were unloading! And she placed 2nd! Too bad she didn't finish 3rd to get the Reagan Guidry award (Reagan had an award named after her this year for being one of the top fundraisers last year)! Mike's sister Kristy also ran the 5k as well. All of Mike's sisters from the Houston area braved the bad weather and came out to support Reagan (we did take a team picture, but forgot to get one on our own camera)! Carolyn, our next door neighbor from before we moved, came as well! So good to see everyone! Thank God we had Reagan's rain/wind cover for her stroller, she was the only one that was dry by the end! Ryan took off running during the walk (apparently trying to "win the race") , thankfully one of his cousins managed to catch up with him because us adults could not. Afterward we went and had brunch at our old favorite breakfast spot (near the apartments we lived in when we first got married)! It was a long trek for a short walk, but we are still glad we made it. Both kids were well behaved for the ride and we're happy to be back home tonight!
Friday, April 6, 2018
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!
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!