Wednesday, January 23, 2019
Reagan has had some really great days the last week or so and she was just starting to get a little on the tense side right before our trip. I was worried that she was going to wake up unhappy and I would have to cancel both of her appointments, but thankfully she surprised us all and was good. Definitely on the tense side, but calm. We left early as we had an 11am appt with her neurologist. We spoke with him about the results of the home 72hr EEG we did in early December. We did see one seizure that we marked and it did come back as a seizure. On a good note, no seizure activity was noted at any other times, so it's good that there's nothing going on that we are unaware of. We did make the decision to up her Banzel dose and spread it out over 3 doses to try to lessen the amount of time in between doses (usually we'll see a seizure an hour or two before her next dose). We also talked to him about a medicine another doctor wants her to try. About a week before this appointment, we met with a pediatric psychiatrist and discussed some mood stabilization medication options that might help with her bad days. It's certainly worth a shot. So before starting anything, we wanted to run it by her neurologist. He thinks it's a good idea so we'll wait a little while after increasing her Banzel and then we'll try out the new med (Seroquel). We're also going to start it at night, in hopes that maybe it will help Reagan get a little bit more regular sleep, which in and of itself could help her bad days. After the neuro appt we headed over to the research building to get blood and an EKG. The EKG was easy...the blood, not so much. After two sticks we finally decided they needed to call in the big guns...the VAC team (they bring an ultrasound with them to find the veins). So we headed over to our appt with metabolic geneticist that oversees the kiddos on the EPI-743 study. We spoke to him about Reagan's movement disorder and the fact that they are now thinking this is something linked to her NACC1 gene mutation. We signed a release to be included in a movement disorder study being conducted in Finland so it will be interesting to see what comes out of that. We also spoke about possibly having her evaluated by a movement disorder specialist there at Texas Children's. We'll see. Not sure if we are up to another specialist and more medications at this point. After our genetics appt, we headed back to the research building for the last attempt at bloodwork. This time the guy from the VAC team got blood with the first stick and had no problem filling the 10+ tubes needed! Woohoo! From now on we will not do blood without them. After that we trekked back to our car and headed home just in time for Houston rush hour traffic! It was a looooong day. We didn't get home til close to 8 and we were all exhausted. My girl is still very tense, so I wouldn't be surprised if tomorrow is a bad day...I'm just glad she held out and we were able to get these doctors appointments taken care of!
Saturday, December 8, 2018
This morning was breakfast with Santa at the elementary school. We were there bright and early and the first to meet with Santa. He was great! Took his time and gave both kids lots of attention. It was so sweet. Ryan was so excited and Reagan enjoyed it too! It was a great experience. Then tonight we went to the Reindeer Run a 5k in Roundrock benefiting the All Abilities Park. There was no running, but we walked it as a family and both kids seemed to enjoy the outing and the lights. We even met up with Reagan's nurse who ran it with her boys and pushed someone through Ainsley's Angels! It was a great Christmasy Day!
Thursday, November 22, 2018
Thanksgiving was not great for Miss Reagan this year. She had a bad day on the Wed before, so she was recovering and just extra sleepy on Thanksgiving. We did have a nurse for part of the day, so that was helpful. We went to my stepsister Jennifer's house this year and it was really nice being so close to home (especially with Reagan sleeping all day). She had her in laws in who are all super nice, so we all had a really great time. Actually, her mother in law has been praying for Reagan since Reagan was a baby! Her entire church group really, and she's even made several beautiful quilts for her! It was too bad that Reagan wasn't up to going. Ryan enjoyed himself though!
Wednesday, October 31, 2018
It was a wet one this year! Thankfully we knew that ahead of time and took advantage of the nice weather the day before to take some pics of the kids in their costumes (Sully & Mike Wazowski) at a nearby pumpkin patch. We also arranged with a few of our neighbors a little Halloween eve trick or treating! This worked out perfectly as the weather was great and we were able to keep it short and enjoyable for both kiddos. The day of Halloween it was cloudy but dry until the sun started going down...aka the beginning of trick or treating. Ryan and I made it to one neighbors house before having to turn around and come back for the umbrella and rain boots. Thank goodness we did, because the rest of the way it rained and rained hard. We really only made it to the end of our street and back and my little monster was drenched! Our decorations were a big hit as always! Although they did miss the scary clown, my mom, who was not here this year. All in all it was a wet but good Halloween.
|Scary clown grandma|
Saturday, October 13, 2018
It was not the best day for a walk. Reagan was on the verge of a bad day and there was rain in the forecast. We had her dressed and ready but ended up having to leave Reagan behind with her nurse. She was just too stressed. It rained a little on our drive there, but held off long enough for the walk. It actually turned out to be nice, it was overcast so it was cool and there was a nice breeze (which Reagan would have hated). Reagan's little friend Carley joined us, which was so sweet, because she knew in advance that Reagan wasn't going to make it but she came anyway to represent for her friend. Reagan's teacher and her family came too, which was nice. My mom drove in for the walk as well as three of Mike's sisters and their kids and my dad and step mother. It wasn't our biggest group, but not a bad showing considering the weather. The rain started up right after the walk so we all headed to breakfast. We didn't stay long, as we had to get back home to Reagan, but it was nice to get to talk with everyone for a bit. Reagan got worse as the day went on and escalated to a "bad day". It was unfortunate that she had to miss but I guess there's always next year. You can still donate if you'd like by clicking this link to Team Rallying for Reagan. I will post more later about another opportunity to donate toward a cause that could help Reagan directly in the very near future!
|Reagan and her nurse|
|Who's having more fun?|