As one year ends and another starts, everyone is reflecting. What was the best movie of the year? (Edge of Tomorrow, if you must know... Ok, maybe not the "best" but it is the one I enjoyed the most). What was the best song, etc. "2014, eh?" as some of my closest friends will have been saying because they have been saying a variant of that for at least 25 years now. As 2013 was becoming 2014, Henry was having a major surgery and was really, really, sick. Aly and I have been doing our share of "this time last year" reflections because the contrast is pretty remarkable.
The good news is that the reason the contrast is so notable is not only because of how terrible things were (and they were) but how good things are now. Charlie and Henry get the credit for that but Aly and I are grateful every day for the people that have supported them. For example, they have physical therapy and occupational therapy at the house (the therapist work for River Kids, which seems like a really good organization). We really believe that the progress they are making has a lot to do with the help these therapists have given the boys and us. Since the last post, Henry has been crawling all over the place (at first using an "army crawl" with his belly on the floor but more recently getting almost there to doing it on all fours) and he pulls himself up too (a lot, but he seems to prefer to do it on higher risk unstable or otherwise dangerous objects). Charlie is a lot more comfortable on his tummy now than he used to be and moves around by rolling. They even occasionally hang out on their tummies together.
We also got a chance recently to spend some time with two of the nurses that helped them in the NICU, which led to some reflection about how professional, helpful, compassionate and just great all the NICU people were in 2014. Then there are our family and friends, near and far, that, hopefully, know how grateful we are. 2014 was a hard year for us but, thankfully, we can feel good about 2015.
The last time I posted, I said that C&H were making new news every day, so let's prove that point with some more catching up. They turned one and we had a little party for them, that we were delighted that all their grandparents managed to attend. We gave them little cupcakes - I am not from the USA so this seemed to me to be a very irresponsible thing to do, but I am happy to take everyone's word for it that everybody does it. (They survived).
I should also mention that they both wear glasses now. I didn't write about ROP that much because, frankly, it was never going to be fatal. However, Charlie still gets regular treatment for issues with his eyes - and had a surgery in October. Henry has been told he needs glasses and it is better for him to just start wearing them now.
November also saw a visit from my Mum (and Brian) from the UK. Photo opportunity - first time the boys had both of their grandmothers in the room at the same time.
Thanksgiving turned into a bit of a happy / sad time. Firstly, let's focus on the happy. If you only know our lives through this blog, then you might not have heard the update to the very sad post we wrote in April. Aly's dad was not given much time to live because his heart condition had deteriorated rapidly and significantly. Well, the amazing news about Thanksgiving was that Rob was not only alive to enjoy it, he is doing incredibly well and is defying all of the odds. He is on the heart transplant list and has a medication plan that is really working for him for now. The sad part I mentioned was that we had big plans to have Charlie and Henry finally meet their twin cousins Laurel and June. Laurel and June arrived in Texas as planned but, unfortunately, their parents got sick and, with a heart transplant candidate and two premature babies planned to be part of the party, it was decided that the sick (well, sick with an infectious disease) people should leave and let the rest get on with it. So, the big family get together didn’t quite materialise, but the boys had a great time anyway. They have seven cousins and they’ve not managed to meet any of them yet. Surely 2015 will fix that.
Another tradition around this time of year appears to be dressing up in embarrassing clothing. So, after Thanksgiving, we took the boys to meet Santa and dressed them up as elves…
Then we dressed them up in some sort of Christmas with the Von Trapp children garb;
As Christmas got closer, the Christmas sweater was up next;
Next up, Santa’s helpers (granted, these outfits are not that embarrassing… relatively speaking) giving Jean a Happy Birthday message. Jean was one of the volunteers that I mentioned here and here that took the photos of the boys.
As I mentioned, we were delighted to have a visit from two of their most important nurses. I don’t think we wrote many posts when we were in the hospital that didn’t praise the work of the nurses but in case we weren’t clear – we will never forget all the hard work they put in for our boys. However, let’s not get off track – embarrassing outfits – how about owl hats?
Finally, for Christmas morning, let’s all join in and wear matching pyjamas.
And with that, Charlie, Henry, Aly and I would like to wish you all a very happy and healthy 2015. Cheers!