LJ's Honey Jar_OT with Cathy Fox 6/25/2010 from Jenn S on Vimeo.
Saturday, June 26, 2010
Wednesday, June 23, 2010
Highlights of Our Ch-cha-cha-changes
It's almost been one week post-op. Here are just some of the highlights from the past week. LJ's hearing is much improved. He loves to hear my phone ringing, maracas shaking, Daddy singing, and he's even rediscovered playing with some of his old toys. He's not so fond of Tango barking, Nate melting down or construction trucks beeping all day long. His throat is recovering from the adenoids nicely and spoon feeding sessions resumed yesterday. (they've been awesome today with Noodles being able to swallow every bit of the 2 tbs each meal) He's still partial to the sweet potatoes (which we've doctored with brown sugar) over the green bean purees but what kid wouldn't! LJ's breathing also sounds a lot clearer- no more junky sounding breathing. It's really so clear that I almost thought he wasn't breathing because he was so quiet the other day. One other milestone is that LJ can now wave hello and goodbye to people with such purpose!
We had a Father's Day BBQ to let our daddies know how much they are appreciated. ( I think Nate actually ate three helpings of this coffee cake with Haagen-Dazs ice cream...that's how much he loves his Daddy.) Oh, and our farm share has officially kicked off with all sorts of yummy zucchini, chard and blueberries. I even made a delicious vinaigrette of garlic scapes, Dijon, honey, balsamic and olive oil for salads and dipping. It's ridiculously good.
Nate has been out of school. Summer camp starts next week so we've been enjoying what little unscheduled time we have at the pool. He's so proud (as are we) that he learned to dunk his head underwater. Nate has also participated twice now, in LJ's music therapy sessions- which might be more aptly named "dance parties". And we've played in the sandbox in our backyard.
LJ has pretty much been fussy and off-routine since surgery. He's been partying at night- usually around 1am for about an hour or two. And that's after we finally get him to go down at about 9pm. Wake up time has been anywhere from 5:45am to 9am. So by Monday we were all a little bit fried and in need of some zzz's. Didi came on Tuesday and gave a much-needed respite & giving Nate some requisite one-on-one time. Nate has really come thru all this just beautifully but he was starting to get over it as in "Please pay attention to me now!!".
But, this is all to be expected. When I think about how much LJ has been hearing just in the last week, he is undoubtedly on sensory-overload. On top of that, he LOVES his walker. He can spend more than an hour in his Pony gait trainer...exploring...opening and shutting doors...opening kitchen cabinets...feng shuing the dining room...taking toys from the living room to his room for safekeeping...unrolling the toilet paper in the bathroom. LJ's 4-level communication board will be here in a few weeks. We'll see how it goes and then we may look into getting an Ipad with a special, augmentative communication application called a proloquo2go. It's been getting a lot of good reviews lately and it's much more portable than the average communication device but the downside is Early Intervention won't pay for it.
And we're also getting a new caregiver. Sadly, our awesome caregiver had given her notice while we were in NJ. She is getting married at the end of August and then going back to school fulltime. Nate cried when he heard about it:( Needless to say I've been busy interviewing and now training a new caregiver. Things are moving right along. More soon!
We had a Father's Day BBQ to let our daddies know how much they are appreciated. ( I think Nate actually ate three helpings of this coffee cake with Haagen-Dazs ice cream...that's how much he loves his Daddy.) Oh, and our farm share has officially kicked off with all sorts of yummy zucchini, chard and blueberries. I even made a delicious vinaigrette of garlic scapes, Dijon, honey, balsamic and olive oil for salads and dipping. It's ridiculously good.
Nate has been out of school. Summer camp starts next week so we've been enjoying what little unscheduled time we have at the pool. He's so proud (as are we) that he learned to dunk his head underwater. Nate has also participated twice now, in LJ's music therapy sessions- which might be more aptly named "dance parties". And we've played in the sandbox in our backyard.
LJ has pretty much been fussy and off-routine since surgery. He's been partying at night- usually around 1am for about an hour or two. And that's after we finally get him to go down at about 9pm. Wake up time has been anywhere from 5:45am to 9am. So by Monday we were all a little bit fried and in need of some zzz's. Didi came on Tuesday and gave a much-needed respite & giving Nate some requisite one-on-one time. Nate has really come thru all this just beautifully but he was starting to get over it as in "Please pay attention to me now!!".
But, this is all to be expected. When I think about how much LJ has been hearing just in the last week, he is undoubtedly on sensory-overload. On top of that, he LOVES his walker. He can spend more than an hour in his Pony gait trainer...exploring...opening and shutting doors...opening kitchen cabinets...feng shuing the dining room...taking toys from the living room to his room for safekeeping...unrolling the toilet paper in the bathroom. LJ's 4-level communication board will be here in a few weeks. We'll see how it goes and then we may look into getting an Ipad with a special, augmentative communication application called a proloquo2go. It's been getting a lot of good reviews lately and it's much more portable than the average communication device but the downside is Early Intervention won't pay for it.
And we're also getting a new caregiver. Sadly, our awesome caregiver had given her notice while we were in NJ. She is getting married at the end of August and then going back to school fulltime. Nate cried when he heard about it:( Needless to say I've been busy interviewing and now training a new caregiver. Things are moving right along. More soon!
Thursday, June 17, 2010
We're All Ears
“Survival and thriving. These are the poles between which the moments of our lives are strung. The balance is tenuous, and the outcome for each of us is different. Yet we mostly start with the same raw stuff: skin, a mother, food, shelter, breath, and each moment as it unfolds — one after the next — right now. From these all the intricacies of our lives are made. No matter who you are, your day is occupied with the small repetitive tasks of living, and it’s in these moments that we’re shaped; even as we’re dreaming of other things.”
— Christina Rosalie, A Field Guide to Now
Monday, June 14, 2010
"Turning On" LJ's Ears
We've just started our official journey to the (better) hearing world. After many months of fluid in LJ's ears causing moderate hearing loss and many, many auditory tests, his ear tubes/adenoidectomy surgery is scheduled for this Thursday. We've been patiently waiting ever since the test at St Joe's confirmed that it should help. Our first surgery date was May 24th which was then postponed until June 1st. A bunch of snafu's later, here we are.
I've oftentimes wondered how LJ's voice will sound and what it might feel like to hear him saying "Momma", "Daddy", "Doggy", "Nate" or "Mine!". He's been so quiet ever since he was a baby (except for a good pension for crying) and now we understand that its probably because he never had the reinforcement of hearing himself cooing. To him, everything has probably sounded like it's garbled underwater.
I hope that he gets to hear the whirl of a fire engine whooshing down the street...or mommy singing him a lullaby...or Nate telling his baby brother how much "he loves him more than all the people in the town". I hope this procedure is going to give him the ability to start communicating orally. We've been trying to teach LJ some baby sign language but he seems limited by his motor function. It has got to be so frustrating to live in a world where people do not understand you. That's just me projecting all my neurotic, mommy worries on him. Still, it's also our dream that this surgery could greatly impact his ability to swallow easier (removing his adenoids should help) and possibly eat like a normal, healthy toddler. We even wonder how much his balance will be improved- will it help him to walk or even sit in a propped position? We are so nervous about what lies ahead but at the same time we have so much hope.
I've oftentimes wondered how LJ's voice will sound and what it might feel like to hear him saying "Momma", "Daddy", "Doggy", "Nate" or "Mine!". He's been so quiet ever since he was a baby (except for a good pension for crying) and now we understand that its probably because he never had the reinforcement of hearing himself cooing. To him, everything has probably sounded like it's garbled underwater.
I hope that he gets to hear the whirl of a fire engine whooshing down the street...or mommy singing him a lullaby...or Nate telling his baby brother how much "he loves him more than all the people in the town". I hope this procedure is going to give him the ability to start communicating orally. We've been trying to teach LJ some baby sign language but he seems limited by his motor function. It has got to be so frustrating to live in a world where people do not understand you. That's just me projecting all my neurotic, mommy worries on him. Still, it's also our dream that this surgery could greatly impact his ability to swallow easier (removing his adenoids should help) and possibly eat like a normal, healthy toddler. We even wonder how much his balance will be improved- will it help him to walk or even sit in a propped position? We are so nervous about what lies ahead but at the same time we have so much hope.
Tuesday, June 1, 2010
Dreams
"If you are a dreamer,come in. If you are a dreamer, a wisher, a liar, a hoper, a prayer, a magic-bean-buyer. If you're a pretender, come sit by my fire, for we have some flax-golden tales to spin. Come in! Come in!"
~Shel Silverstein, Where the Sidewalk Ends
Subscribe to:
Posts (Atom)