Yep. I've been a very bad blogger. Looks like my last post was on June the 7th. That's horrible. We've been very busy and now that Spring/Summer is here, my evenings have gotten so full, that I've had a hard time finding time to blog. To get you caught up on all things going on with us, here's a list:
1. We're still looking into a Rhizotomy for Ben. Really looking into it. Referrals have been sent to 2 separate hospitals for more opinions. So we wait. While we wait, I research and read blogs. I've been totally addicted to this blog as Hannah just had her rhizotomy a little over a week ago.
2. Ben continues to struggle with very high muscle tone in his hamstrings and gastrox. We had botox for the hamstrings 4 weeks ago and had our 4-week post-botox appointment today with his physiatrist. The hamstrings have definitely loosened up but the gastrox are worse. For him, this makes walking with his walker very difficult so he hasn't been walking much lately. The physiatrist is still thrilled with all the progress he's making like: walking with canes, crawling up and down stairs, getting in and out of bed, and being totally potty-trained (more on this later). I think she's even more convinced that a rhizotomy is the way to go for Ben.
3. So...since his gastrox are so tight, he's in casts for the week. They wanted to do a number of weeks of casts, but I just won't do it. It's summer. And in New Brunswick, Canada summer is only about 8 weeks long (if we're lucky). So he's only getting one set. I'm struggling a bit with this decision, but I just cannot cast that boy for half the summer. Summer is the only real time that we actually play outside. Ben LOVES the beach, the pool and the sandbox...three things that don't mix with casts. So we'll hold off on more interventions until September.
4. Yep, like I said. Ben's potty-trained. I really can't believe it. Daniel potty-trained quite easily last fall but Ben was another story. And with our CP-kids we never know what is personality and what is CP. The truth is, he was never dry so we pretty much knew he was nowhere near ready...until about March. He started having dry diapers and our nanny forced the issue (meaning HUGE bribery and rewards) and now he's totally potty-trained. Of course, being potty-trained is not really any easier for us...since he needs so much help, but that's getting better everyday. He can actually walk into the bathroom with his walker, walk up to the toilet, get help from us to pull his pants and underwear down, and then stand up to pee....ahhh, the benefits of having a penis. Really, I'm still pretty amazed about all this.
5. I finally got away with Daniel for the night. For months, I've been meaning to do this. I am always going off somewhere with Ben and even though it's always for appointments, of course, Daniel doesn't realize this. So I've been wanting to get away with Daniel on our own for some time now. On Monday, I finally did. Off we went to Halifax to stay with friends for the night (who also have 2 little boys). He had so much fun and so did I. I feel somewhat guilty saying it, but hanging out with just one kid (who can walk) is just so easy. And enjoyable. We went to the playground...and I GOT TO JUST SIT ON THE BENCH AND WATCH! What a nice change! Now...I just need to figure out how to do this more often.
6. And now for the big surprise (well, it was for me anyways)...BOTH Ben AND Daniel need glasses. We saw their opthamoligist this week for our annual follow-up (due to their prematurity). We've seen her every year and there has never been an issue...so I really thought there wouldn't be this time either. Well, it turns out that Daniel is quite far-sighted and REALLY needs glasses. And Ben has astigmatism (not a shocker - since I have pretty bad astigmatism myself). So off we went to pick out glasses. Honestly, they were adorable, but I'm not looking forward to them arriving. I'm really not. I was pretty OK with Daniel getting glasses, but when she told me that Ben needed them too, it really got to me. Just one more thing for him to deal with. Ah well...the good news is that their eyes (i.e. retinas) are nice and healthy and that of course is the most important thing.
I think that should just about bring you up to date. Sorry, I've been such a bad blogger!