Just when you start to think that things are on the upswing, that life is leveling out, reality hits. Yesterday we were invited to go with friends to a local community pool. Normally we shun public places from Oct-Apr but I thought that with all the bleach and chlorine a pool might not be so bad. Afterall, swimming is an encouraged exercise for kids with low tone like Boo. So off we went. All three kids had a blast in both the kiddy splash pool and the larger family one and it was probably the best family time we've had in awhile. Boo was particularly happy and splashed, kicked and giggled for an hour and a half straight in the 85 degree water. Our friends also have a little boy just two months younger than Boo and this is where the reality part comes to hit home. "O" as we'll call him was off playing in 12inches of water, walking around, running through the fountain, climbing up the sides of the pool and back in again while his mother sat on the sidelines watching him carefully. Boo could hardly walk though the water without loosing his balance and as hard as he tried he could not climb up the sides of the pool, let alone lower himself back in the water. So I gave him my hand and tada! A new confidence was born! As long as he had that bit of balance support he did really well (although he still needed lots of help climbing in and out) He could see what his friend was doing and wanted to try himself.
My heart broke as I watched this unfold around me and realize that while he's made really amazing strides with the O2 he is still not like other's his age.....yet. There is always hope! "O" did not have blotchy red and purple skin from the effects of the body going nutzo over the temp changes water to air, he didn't have everyone staring at his tegaderm taped belly, he wasn't wigging out the highschool age lifeguard who kept looking at us trying to figure out if he was really OK to be swimming, he could climb, walk and navigate the slippery floors without assistance. I can all but guarantee that an hour after getting out of the pool and being warmed up his core body temperature was higher than 96.1 and he probably wasn't having low O2 levels and a heart rate 10bpm lower than his normal low throughout the night and I imagine that if you fed him it would probably digest just fine instead of backing up and sitting there for 2 hours like Boo did. All this to say we have realized that if we are going to go to the pool again we are going to have to change some things. We'll have to take Boo out and warm him up more often, check his vitals and also not stay as long to begin with as it completely wears him out. This is hard because he LOVES it and did not want to sit still for even 2 minutes when I had to retape his tube guard. (we cover his tube site with tegaderm when swimming) We'll see how it all goes next week and if we can find a happy medium between his health and his happiness. The girls also wouldn't like cutting our time short because of Boo.
On the Mommy front I have been pacing my wardrobe for a week trying to decide what to wear to the hottest date I've had planned in a very long time. Hubs is taking me to the nicest restaurant in town on Saturday night at 8:30pm along with another couple we are good friends with. The restaurant is having a special and our dinner is going to be 1/4th the price of normal so while we'll have to skip our next two date nights, it's within the range of being able to afford it by doing so. This has led me to agonize over what dress to go in. Don't get me wrong, I have a few cocktail dresses that would be perfectly suitable for the occasion that have been sitting in my closet all lonely since before Boo was born. So the problem isn't that I have nothing to wear, it's that I have nothing I WANT to wear. I've always bought clothes that are very classic in style so that I can wear them forever. That is where my problem is. I'd been wearing these dresses over and over and while to the rest of the world they still look really nice and totally Jackie O, to me they look....boring. It's my first big date in forever why wear the same ol, same ol? So I went shopping and bought three dresses in the latest, hippest and most trendy styles and brought them home to try on, maybe this would give me the inspiration that I needed to figure out what to wear. I kept the bag and the receipt and tried them on. The first one....well lets just say it looked bigger on the hanger, either that or I am no longer as skinny as I once was. The second one was a nice little black dress but perhaps a bit 1996. The third one was the ringer, a dark purple, one shouldered, draping creation that hugged all the right places and none of the wrong ones and was about 6inches shorter that anything I've put on in the last 4 years or so. According to Hubs though it was ringing a few too many of his bells and he thought he might hurt someone if he caught them looking at me in it. (I have to admit, it was cut perfectly to hide what I wanted hidden and not hide the parts of me that still showed well.) Ahhhh so what to do? (I can't actually afford the dress anyway!) If you are me you sit in front of the computer with a piece of fabric from your stash wrapped around you and you sift through the latest Emmy Awards What's Hot list until the light bulb turns on and you head to the sewing machine. 2 hours and 20 minutes later you will emerge with a dress that is trendy, a bit shorter than you expected but doesn't cause the Hubs to want to lock you away from sight. My dress still needs some embelishments added but the structure is there so I'll finish it tomorrow and hopefully get some pictures up after our date. (And after I figure out how to do that on here) Time to sleep busy day ahead!
Ooo! I can't wait to see the pictures of your dress!
ReplyDeleteI totally know what you mean about how off our kids are when compared to others. I don't know how it will be for Boo, but Q was globally delayed around Boo's age. She was hardly able to walk at all, was very weak, wore a brace around her leg and etc... it has gotten better, but i twas always difficult to see other children her age or younger running around like they were, and her not. She has a cousin who is 9mo younger than she is, and even now, he is much sturdier than she is at everything. it was hard to watch at that age. But... Quinn somehow managed and she still does. She has days where she is obviously slow and floppy, but she is almost 5 now and she is doing very well and almost looks normal when compared to her peers. The only thing that is off about her now is still her balance. I learned that when Q is getting waht she needs, she does much better. I hope it's the same with Boo.
take care! I know it's hard to watch your child struggle with stuff that should just come naturally, and especially to (unintentionally) have to compare him with another child his age.