Saturday, September 10, 2011

our week in summary

Monday: Holiday. No school for Rhys. Cody and I "slept in" since the kids didn't get up until around 7 a.m., then we did some work around the house.

Tuesday: Zoe has MDO, which was rather horrible for her. Lots of crying, though maybe a tiny bit better than last week. Rhys has school, he's getting better about getting on the bus without fussing. Immediately after Rhys gets home we set out to the med center for a doctor's appointment. He isn't allowed to eat because he is being sedated for Botox. I work myself up thinking how crappy it's going to be watching him have Versed shot up his nose, but he really surprises me and takes it like a champ! Dr. writes scripts for new AFOs and a feeding chair for Rhys.

Wednesday: Rhys has school, we skip OT so we can once again immediately head to the med center for a swallow study. As a first time visitor I have to navigate through Texas Children's Hospital, and quickly learn there is apparently more to the West Tower than just the one building. I find the hospital depressing as it is full of children with various illnesses. While trying to rush to make his appointment I get attacked by the elevator door and walk away with only half the nail on my big toe. Swallow study reveals a normal swallow as we predicted, Rhys is starving because they contaminated all his food and brilliant me didn't bring extra. Once home I have a message on my phone from the pathologist who did the swallow study. She finds what appear to be enlarged adenoids and recommends an ENT visit. Enlarged adenoids are apparently a common contributor to eating issues so I'm beyond annoyed no one has mentioned this to us before.

Thursday: Zoe does a lot better with MDO, though she is still crying a little. I left her lovie this time so maybe that helped. Rhys has PT in the afternoon and did great! The PT thinks the Botox really helped, she was able to get Rhys to walk (assisted) in his gait trainer about 15 feet. Rhys is in a great mood all day, I am really happy he seems to be taking to his new therapies so well.

Friday: Rhys misses school to have a gastric emptying study. No reason to believe he's having issues, we're just trying to rule everything out in an effort to get his eating on track. Cody takes Rhys while I stay home with the kids. About ten minutes into the procedure I get a text from Cody saying "shoot me". I actually find that funny and think welcome to my world! No word on the results yet, glad it's over. Swim in the afternoon in which Rhys was completely fed up and refused to participate in any "monkey crawling" around the pool.

Saturday: Not sure how I managed it, but I got about 9 hours of sleep last night. Who cares if it was occasionally interrupted by a hungry infant, that's about 4 more than I normally get!

Tuesday, September 6, 2011

more pics!

The two older kids play very well together. They have their moments, but they love each other. Zoe occasionally torments Rhys and steals his toys, but she does share occasionally too, and tries to give Rhys kisses and pats on the back. Rhys on the other hand sometimes gets annoyed with Zoe and he'll grab her feet and not let go. Which as you can imagine doesn't sit too well with Zoe.
They were both giggling up a storm the other day so I walked in to see what was going on and found this.

Rhys had his Botox today. To be honest I was really dreading it. I don't know what exactly I was expecting, but it went over better than I'd thought. The Versed was given by basically squirting a syringe into the nose. Rhys didn't even fuss for that, but after a few seconds he started swatting at his nose and whined a time or two. It didn't take long for it to kick in though, at which point Rhys was a wet noodle. He got 8-10 shots in the back of his thigh, calf and inner thigh. He didn't fuss much with the shots either, just the initial stick, but once she was done he was over it. We'll see how this works out. He's really into pulling up on these little chairs in the playroom.

He does this all on his own, and is doing it quite frequently now. He still needs to support himself, but the fact that he is interested in this position is very promising. He's working towards eventually getting the urge to sit on his own! Whew, what a day that would be.

Drama Queen is in her second week of MDO. Day one was okay, but she was a little confused. Day two wasn't so great, she cried when I handed her over and then when I peeped in the window on the way out she was a little out of sorts. Today she wasn't so happy when I handed her off but when I peeped in (the classroom windows are covered with paper, except for "peep" holes the parents can look in) she was calmly sitting in someone's lap watching the other kids play. But when she was picked up this afternoon she was crying again. And, she refused her snack and didn't eat but three bites of her lunch. She really must have been upset if she refused her food. Anyway, I know the transition expected to be a challenge, but I am honestly surprised she is taking this so badly.

Her hair is getting really long, but she only allows a pony tail. no clippies or barrettes allowed!

Sweet baby boy has started spitting up. Quite a lot, and frequently. I just changed him before this pic and wouldn't you know he spit up as soon as I put him down. Beckett still eats every 2-3 hours at almost eight weeks old. He is a milk monster and it is honestly tiring having to keep him fed. But he is a cutie!

They're still in love with the cozy coupe. As you can see, it hasn't made it outdoors yet, except for the occasional ride from Cody up and down and sidewalks. They are both in this thing every single day.

Thursday, September 1, 2011

busy first weeks of school

The last two weeks have been crazy around this house. Rhys started school last Monday. He was so excited about the bus until Thursday rolled around, then it turned into an all out scream fest. According to the bus driver (who btw is fantastic, we will be loading him up with goodies throughout the year because he really takes care of Rhys), as soon as the bus gets moving Rhys is okay. And according to Rhys's teacher he has been doing well at school. So Rhys is up for school at 6:30 and gets home around 11:30. We have therapy/swim between 1:45-2 p.m. three days a week right now so Cody and I decided to try to cut out Rhys's nap on those days since it is very hectic trying to get Rhys fed, stomach settled and a nap in before it's time to leave the house. He's actually done really well with no nap, but we're still in transition mode and there have been a couple of days where he's been so exhausted by 4:30 that he's fallen asleep in the living room. So I've let him sleep for about 30 minutes and then gotten him up, which is another ordeal because he is still super tired and therefore cranky the rest of the afternoon. He is then in bed by 7:30, which hasn't been the norm for him for quite some time.

Therapy is going well. Surprisingly, the transition hasn't been too bad. He still has days of being an unwilling patient, but the staff is great and the facility is awesome as well. Aside from a few small difficulties of adjusting I really think the huge change-up of school and therapy is beneficial to him. He's really being challenged with all these new activities. We decided a while back to go ahead and try the Botox for Rhys's legs. He was scheduled for it yesterday, but Rhys has had a ton of drainage so I rescheduled it to next week. The doctor is using the Botox to hopefully help with the scissoring of Rhys's legs. He'll get Versed for the procedure, so he wont remember receiving the injections, but the Versed is given via nose drops so I am 100% sure Rhys (a) is not going to like that at all and (b) will definitely remember the drops the next time we have a visit to this doctor and most likely scream as soon as we get out of the car. We've also got a swallow study coming up, a gastric study (to see if maybe Rhys doesn't process food fast enough and that is some how contributing to his food aversions) and a therapy consult with speech. Whew!

Zoe started MDO on Tuesday. We handed her off without a single fuss and she did very well, but was so tired when I picked her up. All this running around is new for me since I'm use to hanging around the house, but somehow it works.