Thursday, March 21, 2019

March Birthdays

Both kids had their birthdays...it was a busy March. Ryan turned 7 and Reagan 12. Ryan insisted on another pokemon party, that's two years in a row! We had it at a place called Pump it Up. What we liked about it was they keep the parties separated so it was just one party in a room at any one time. It was mainly kids from Ryan's 1st grade class and a few from his Kinder and pre K class. Everything went smoothly and everyone had a great time. Success. Reagan's birthday fell a little flat this year, leaving me feeling very guilty and disappointed for her. I had the great idea to take her to Sea World. Our last trip was so magical, I was hoping we could recreate even a little of that. Not so much. After getting up very early and driving 2.5hrs to San Antonio, we had to sit at least 45min in a line of cars before we could even park. Then we waited forever in line for tickets where we finally gave up on getting the disability rate and just bought season passes (same price as a daily ticket). It was unseasonably hot and very sunny and oh so crowded. I thought we'd be OK since Houston and San Antonio had already had their spring breaks the week before, but boy was I wrong. There was no magic. Reagan was a good sport but it wasn't the birthday I had hoped for her. The best part of the park for her was actually the new addition Discovery Point (which I don't think you even need a ticket for). It had floor to ceiling viewing windows of the dolphins and the sharks in the aquarium. There wasn't much else for her in the park. I was very disappointed. It was just too busy. I think we'll try going back in May while school is still in session. Hopefully we can book some animal interactions and get her closer to the animals. It was a long day. We left the house around 8am and didn't get home til 7:30pm. And we still had to sing happy birthday! She tolerated the song better than usual, and was still in a decent mood despite the serious look in her pictures.










Another ❤ Grandma cake and I ordered the cookies











 

Tuesday, March 5, 2019

He's a model

Ryan did some modeling recently. Three different shoots. One Fourth of July the other two more spring shoots. He's definitely got that fake laugh down. He can laugh in 2 seconds flat! They love it, but I wish he'd show less of the toothless look. The pictures turned out pretty cute nonetheless. :)



the pic I took (smile with your mouth closed)

















Wednesday, January 23, 2019

Houston check up

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!