This is where we are right now, on day TWO of filling:
(I haven't even started cleaning the outer side yet, which is why it's still dirty... figured it would be tremendously easier to clean once the pool was filled!)
It's been a little over a week since we bought the pool. For the first few days we were missing this key piece:
In case you're ever wondering, that is what's known as the "inflation nipple." Yup.
Anyway, we knew that piece was missing when we got the pool (from some awesome people, by the way), but Intex sent one for free. All we needed was the plug, but they just cut the whole piece out of a salvaged pool and sent it on.
Of course, as soon as we got the piece in, we were hit with several days of rain, resulting in more delays. We started filling it up today, though, and I'm hoping that in the next 48 hours we'll have the pump and saltwater system running and everything will be ready to go. Here's a shot of what it looked like earlier today:
It has some dirt in it from our rain days, but by the time it's full, everything should be sparkling clean. Hooray!
We probably won't get Asher in it for a couple of weeks simply because the water will be too cold, but I'll definitely have some pics of him in the water once we get going.
For now, enjoy this picture of him BEARING WEIGHT! He stood on Chad's lap like this for about thirty seconds before collapsing. He was using Chad's legs for a little balance support, but all of his weight was on his feet. Superstar!
You can "like" Asher's blog now! Just click the button over there on the right. ----------------------------------------->
As a church, we're in the process of making a very big decision in regard to relocating. Our lease is ending and it's time to move on. We basically have two options before us as it stands now: 1) buy a building and renovate it so that it's up to par, or 2) go "mobile" and meet at a high school every Sunday.
When I look at the two options, the first thing that comes to mind is which one is best for Asher. I, personally, am okay with either one. The high school model actually has worked extremely well for two other churches here in town, and it's always fun to turn tradition on its head a little. ;)
That said, I can't help but think that the permanent building is the better option. Going mobile requires a weekly set-up and tear-down crew, and while I think we would have a solid group of hardcore folks more than willing to help out early on, I also think it would get old fast and help would start to dwindle - and unfortunately, we're just so small that there aren't that many people to rotate through when someone gets worn down or needs a break.
Case in point: the lady who was in charge of the nursery (i.e. scheduled workers) has moved on to other things, so that position is now open at church and has been for a month or so now. I went in to drop Asher off this morning, and I saw a sign-up sheet for the next several weeks for people to work in the nursery... a blank sign-up sheet. Now, it had just been put up this week, so it isn't like it was going to be full. But just the idea that some of those spots might not get filled, and that need might not get met, makes me nervous. And this is in a building where we don't need a set-up and tear-down crew.
(stopping to add: no, my name is not on the list - I will gladly serve in my church, but not in the nursery... I need that respite, which is something that I know not everyone understands, and that's okay)
Anyway, I do worry about having enough hands to get everything done, especially on a weekly basis. And if we have trouble getting people in the nursery now, how much harder will it be then?
Regardless of which direction we go, I will follow and make the best of it. I really don't think going mobile will be a horrible thing if that's the route we take. Yes, I have concerns, but if we head that direction I will find a way to overcome them. And I truly think that either option is a step in a positive direction for our church, so I hope I'm not making it sound otherwise. It's just interesting to me how my decision-making is affected now that I'm a parent. B.A. (Before Asher) I can guarantee you that I would have been ALL ABOUT going mobile at a high school. I really love the concept. But now, I see everything through the lens of how it suits Asher, so I lean in a completely different direction. Ah, parenthood.
Not much to report today. Asher woke up in good spirits this morning and stayed that way for most of the day. He took a three hour nap and woke up from that in just as good of a mood, and it's carried him until... now.
Which works out okay. It is bedtime, after all. Heading off to take care of that now...
.
.
.
And back.
I didn't really have too much time to work on any of my projects (e.g. his room) or really work on any therapy, per se. The first half of the day was occupied by Stinky Pinky completing a ridiculously expensive repair to our septic tank, and the second half of the day was taken up by a rather scary thunderstorm (see video, which doesn't really do it justice). You get sort of used to them in the summer when you live in Tennessee... sort of. I don't care how many you've been through - when they're right on top of you there's always a little fear. Luckily everyone and everything is okay, and I never felt threatened enough to grab Asher and head to our safe place (which, for the record, is the bathtub in our guest bathroom... me, Chad, Asher, 3 cats, and a 75 pound Boxador... yeah, we try to hold off if at all possible).
We DID spend some more time working with books and pages, this time using a Dr. Seuss Hop on Pop board book. He's not doing quite as well with actual books as he is in his roundabout, but he'll get there.
We do have him set up with another pediatric PT here in town. She's at a different clinic, but I've heard really good things about her. She apparently worked at Vandy for quite awhile and has lots of experience. Most people seem to think we'll be in good hands, so I feel comfortable with that.
I also feel comfortable thinking about their waiting room chairs:
Look at those! Yes, it's petty... but dude, when your butt has to sit there for an hour twice a week, it'll start to matter to you, too. ;)
Also in the mix is a new feeding appointment time. His former feeding therapist (whom we LOVED and was really great with him) is now working elsewhere, so we've been without for a few weeks. It's just hard to work something into Asher's schedule when he has so many other therapies, plus accounting for his feeding schedule. The therapist that is going to start seeing him worked with him on speech while his other SLP was out on maternity leave, so she's already familiar with him, and us with her.
We've been really blessed with great therapists - which is a good thing considering how much time we spend with them. Praying that trend continues.
So to all of Asher's therapists, old and new - thank you for everything you do for us!
I found this chair on CYS for a really good price, so I snatched it up. It plays Elmo's giggle and vibrates when activated. It's actually kind of hard to activate, which is a tad disappointing, but then again that might just be a sanity saver in the long run. Haha.
He's able to sit in it really well, which is AWESOME. He has a Spider Man chair sort of similar to this one, but he always had trouble sitting in it without one of us helping him. We think this one might be a little lower to the ground, making it easier to use his feet to help balance himself. Or maybe he's just far more interested in sitting in Elmo's lap than he was Spider Man's. That scenario is just as feasible.
In other news, we also bought a used 18' swimming pool on CYS that I'm in the process of cleaning up for summer. It's quite the task, but well worth it. We're missing an essential piece, but it's on its way from Intex - for free! Once we get that, we're going to fill 'er up and get to splashing! Well, we might not splash right away. I have an 80 degree minimum for all outdoor water ventures.
We're hoping the pool will make for some good therapy for Asher. We've decided to go ahead and buy a saltwater pool system so that we don't have to use chemicals. That will be MUCH better for Asher's skin (and ours), not to mention less expensive for us in the long run. Pictures will be forthcoming in the upcoming weeks.
One of those days.
One of those days that can only be classified as a Terrible, Horrible, No Good, Very Bad Day.
I woke this morning to find Asher drenched in puke, which was exactly what I was hoping to discover first thing (is your sarcasm meter turned on?). It took forever to get him cleaned up and fed. My laundry load doubled. The sun disappeared behind the clouds and refused to come out. While trying to mind my own business in the waiting room at therapy (read: nose buried in book) someone else insisted on asking me questions about Asher, all of which had depressing answers. I didn't get to eat dinner before Bible study so ended up having to buy an overpriced turkey club at Borders instead of the gooey tasty treat I would have preferred - and it was cold despite being heated up.
It sucked.
The real problem with that is not that it sucked for me, but that I'm a crappy parent when I'm pissed off. I have next to no patience, and things that I take in stride on a good day threaten to push me past my breaking point. Asher obviously sensed that things were awry, because he cried and cried for most of the day (with a few respites in between) despite my trying to keep him entertained. He didn't want to sleep, he didn't want to play in his roundabout, he didn't want to play with Elmo... all he wanted was to be held, which - and this is just being honest, as much as I hate it - was the last thing I wanted to do. I just wanted to drink my tea and be left alone. Unfortunately, that's not really an option of motherhood. So I resentfully sat there and held him when really I just wanted to get away.
Thus concludes my application for Worst Parent of the Year.
After Chad, Asher, Sebastian, and I were done exploring Rivers & Spires yesterday, I had to go back to the CM booth to work my second shift. At that point it was approaching 4:00. Well, apparently somebody (ahem) let Asher nap until nearly 8:30PM.
Asher's bedtime is 9:00.
Yeah.
See, for most kids it wouldn't be a huge deal, but Asher is tube fed through his Mic-Key button (see picture) continuously overnight - that's when he gets most of his nutrition, actually. Ever since he was teensy, he's had issues with vomiting. It used to be bad, but over time it's actually gotten a lot better - provided he's allowed enough time to digest.
Last night he didn't go to bed until about 11:00, which means his food didn't go off this morning until 9:00 (whereas it usually goes off at 7:00). Asher basically had no time to digest before we had to get him up and start getting him ready for church.
Do you see where this is going?
I thought he would be okay. We managed to get him dressed, load him into the car, drive to church, and drop him off in the nursery without any instances of vomiting - all signs of being in the clear.
Lo and behold, about halfway through service, Melissa, one of the girls from the nursery came to get me because Asher had gotten sick. Not only did he get sick, he projectile vomited all over my friend Joy's shoulder.
Lovely.
So as I was changing him into a new outfit, it occurred to me that it would seem really odd to most folks if your kids had just puked everywhere and you put new clothes on him and then left him in there. So I had to go through the whole spiel about how he wasn't really "sick" and how he had eaten late and usually had more time to digest and yadda yadda blah. They understood (or else feigned it really well), so I went back and listened to the rest of the sermon.
It's really easy to forget that the things about Asher that are so normal to me can really freak other people out. I'll be going about my business all nonchalant, and the whole time they're thinking "what kind of horrible parent are you to not notice your kid doing XYZ?" I try my best to recognize those potential situations and head them off with an explanation, but it does get hard sometimes, and sometimes I forget. And sometimes I get selfish and angry and feel like I shouldn't have to explain myself or my kid to everyone, which is not the right response. The reality is that Asher isn't typical, and it's really not realistic or fair for me to expect a random stranger (or someone who's never seen it before) to understand that. So, until I make up a little "I have CFC - here's what that means" t-shirt for Asher, I'll just have to keep explaining.
Just kidding about the shirt. Maybe. ;)
I have mixed feelings on this sort of thing. I feel like Asher should get out and be able to participate in fun things like this - after all, we grow through experience. On the other hand, there are certain things that are really difficult for him or that upset him, so then I wonder if it's really benefiting him or if it's just putting him through it for no reason.
There were two main issues with R&S: light and noise. Asher has always had a sensitivity to light. I remember the very first time we were able to take him outside - at four months old. We had been moved over to "Pod A" of the Vandy NICU and his daytime primary, Gina, took us on a walk in the little garden that was adjacent to our new digs. We have that happy moment documented on video, of course. You can watch it now and see his desperate attempt to get away from the sunlight. In all fairness, when you've spent four months indoors, going outside is bound to be a shock; however, even as he came home and was out more and more, he would still squint his eyes shut and try to turn his head to escape the sun. Come to find out, light sensitivity is not all that uncommon in kids with CFC. And, as with everything else, there's a broad range of what it looks like over time. Some kids eventually adjust, and others remain light sensitive. The joys of a rare syndrome with outcomes all over the map.
Asher's sensitivity to noise has lessened over time. He used to freak out over what felt like the slightest increases in volume. Luckily, it was fairly easy to soothe him and calm him back down, but things like going out to a restaurant were, for awhile, not an option. Now I'm happy to say that Asher can join us at O'Charley's and sit and play happily in his highchair while we enjoy a nice meal that someone ELSE made. Really loud things can still get to him, though, and let's face it - festivals are not known for their quietness. Asher did really well today, however. He only got upset a couple of times - once near the bouncy houses full of happy screaming children, and the other time when we stopped on the street to chat with some folks and it turned into one of those situations where you have three different conversations going on at one time and everyone slowly gets louder and louder so they can be heard. Those can make me want to cry, too, so I don't blame him. ;)
All in all, we had a great time, and we'll definitely be going again next year (hopefully with a CM explosion of presence!). For now, I am dead on my feet with my first sunburn of 2010. I think a long, hot bath is in order.
So I know what you're thinking.
Really, Cayla? Another
blog?
Well... in short, yes. :)
In
not-so-short, I've been thinking about doing this for awhile now and
just haven't taken the time to make it happen. Technically I don't have
that time this weekend, but I'm feeling inspired, so here I sit at
12:26AM, typing this little explanation to you, faithful reader.
I
already have a blog. You can read it here. I have no plans for it to go anywhere. As
a matter of fact, I'm still in the process of trying to convince my
husband that he needs to do his fair share and post once in awhile. But
whereas MMLA is about basically anything and everything, this blog is
about one thing only: Asher.
Some of you know Mr. Asher and
his story quite well already. Some of you don't (but soon will). Now
that we have entered into the realm of the two-year-old, it's time to
chronicle.
You see, for so long Asher was so
behind. He still is. But before he had little interest in the world
around him, and frankly, I was just trying to get by and clinging to a
prayer. Over the past several months I've watched as my son hit
milestones that I once was unsure if he would ever reach. I've watched
his personality blossom into its own very distinct Asher-ness. I can
play with him... and he can play back. I can talk to him... and he
responds to me in his own little language. Yes, most kids have blazed
past him as they hit their own earmarks of development, but Asher has
never given up, and though he is left behind in their wake, he is
marching ahead at the pace he and God have determined.
And
I'm okay with that.
