Wednesday, November 23, 2011

well baby visits

Rhys and Beckett just has their 3 year (yes, we're a little late) and 4 month well baby check-ups, respectively. Surprisingly, Rhys looks like he's creeping up the growth charts. He's almost always been on the growth charts, just on the short end, but based on height/weight this time they say he's at the 75th percentile. I don't trust doctor's office measurements one hundred percent, but they're usually close to what the very meticulous nutritionist got when she'd measure and weigh. Anyway, quite an accomplishment if I do say so myself. It isn't easy keeping this kid fed properly. In fact, it's downright stressful at times.
Beckett is 50th percentile for height and weight and looks great. I'm trying to nix is desire to eat every three hours. He will go up to five hours between eating, which is great, but that is probably only about one third of the time and he's old enough to go that long all the time. He is doing more at this age than what I remember Zoe doing. Of course I've slept many times since then and also been pregnant, so maybe I am not remembering correctly. His swing went kaput a few weeks ago and I didn't let myself buy a new one because I knew he was at the age he needed to more action, so buying a swing would have only been easy street for me.

Wednesday, November 16, 2011

MRI/neuro visit

Rhys had an MRI last week... the one the neurologist mentioned way back in April. I was a little nervous about the anesthesia for the test, given the reaction Rhys had after his adenoids were removed. I'm still not sure if Rhys's increased oxygen needs were related to the actual surgery, the drugs they used to knock him out, or possibly the intubation, so I was really hoping he didn't have the same reaction after the MRI. I expressed my concerns to the anesthesia team, but (obviously) they still had to sedate him. They did explain that they don't actually use a breathing tube and instead do something just at the back of the mouth to help keep air moving. Other than being a total grouch for two days he did great with it all.

Today was our follow up with the neurologist. After comparing the first images (from when Rhys was in the NICU) to this MRI the neurologist is comfortable knowing that Rhys's damage was related to his prematurity and is not progressive. Not that we were worried really, but any brain damage can cause things like seizures, etc. And depending on where the damage is located, and what the scar tissue looks like, they can get a good idea of who may be more at risk for these other issues. As of now Rhys is not at risk and other than a yearly follow up we should be good. The only interesting thing that the doctor did find was where damage had occurred.

Rhys's brain bleed was on the left side of his brain. On the very first head ultrasound, done in the NICU when he was only a few days old showed, everything was normal. The second ultrasound is what revealed the brain bleed. All the damage Rhys has now is related to that event three years ago. However, in addition to damaged tissue on the left side of his brain, Rhys also has damage on the right side of his brain. Again, based on the scar tissue the doctor can tell it isn't from a recent event. So, the doctor was a little perplexed given that Rhys was initially diagnosed with only a grade III brain bleed on his left side. He did have an MRI in the NICU right before he was discharged, and that study was supposed to be delivered to our doctor several months ago, but we only viewed the old head ultrasounds today which is something entirely different. I meant to ask about that first MRI, but we'd had a very long day and I was running very late to let Courtney leave and I just forgot to ask about it. Regardless, we got a good report! And even though he can't really give us any insight into what the future may hold for Rhys he is very optimistic given Rhys's behavior and current abilities and just told us to keep trying as hard as we can right now because it will pay off in the long run. We've been told a million times that these kids' brains develop entirely differently than an average baby, and reroute pathways around the damaged areas.

Incidentally, the doctor and all (four) of his medical students got a huge kick out of Rhys constantly telling them "all done". He was giving high fives and even got a little upset when the medical students walked out of the exam room. He's quite the charmer when he wants to be.

Sunday, November 6, 2011


Rhys is starting to scream any time we are in the car. Especially when we start to slow down. I'm talking full out screeching and back arching to where he makes himself choke. I don't think this is only a preemie thing or sensory thing, but it is definitely complicated by his quirks. We don't have the typical communication an average three year old would have so we can't try to reason with him or use any of the techniques I've heard about. Nothing we've tried can break through his screaming so we are at a loss as to how to handle it. And about to lose our minds. If it is only Rhys in the car we can ignore it to the point he starts gagging. But, I draw the line at allowing him to puke in my car because he is throwing a fit. If the other kids are in the car it is miserable for them and Z gets upset when Rhys starts acting crazy.

Any ideas? I'm about to call a behavioral therapist!

Wednesday, November 2, 2011

sick (again!)

Poor Beckett can not catch a break. He's more or less had congestion on some level since he was a couple weeks old. I think I may have mentioned I thought he had the croup a couple weeks ago. While he had the tell tale "barking" cough, it was very mild and didn't last very long. Not the case this week. My poor baby has been miserable. He's trying so hard to give smiles, but then he coughs and starts whining. He tested negative for RSV, so I guess we should give thanks to Z for coughing in his face (before I could get over to stop her) last week and spreading the germs. He is getting better, but still has a ton of snot and has a hard time at night. I hate this! It reminds me why I stayed in with my kids up until R&Z started school. Yes kids are kids and will get sick, but in my case it would be easier for them to get germy when they're a little older.

Rhys recovered very well from his surgery. The morning after he was in tip top shape and ready to come home. He is his happy little self again and has been sleeping like a dream. No pun intended. I sincerely hope this has everything to do with the adenoids and isn't just a fluke. Several people have asked about the change in his voice/speech so I will take that too if it has improved. He is such a smart little guy, he's just trying to figure out a way to get it all out. I see him blooming and it makes my heart melt.

We are working very hard with Zoe on communication. Her vocabulary improves daily, and we've finally gotten her to start signing "please" and "more". She generally whines when something is like she wants or, but we're really pushing her to use words and motions to try to tell us what she wants. It's helped a bit, but she still has a temper. Testy, that one.