I haven't been blogging much lately because we've been busy packing for a trip to the Big Island of Hawaii. We're finally here after a long day(s) of travel. We tried to get out of Indy on Thursday evening but the non-rev travel just wasn't happening (our fault for knowingly trying to travel over spring break) so we went home and tried again on Friday morning and squeaked by. As anyone who's traveled to Hawaii can tell you, it was a couple long flights, but Kaia did great. I had to hold her as a lap child on the first flight but a person was kind enough to let Paul switch seats to sit by me. As I may have mentioned before, it's pretty much impossible to nurse her on the plane unless Paul is next to us or there is an empty seat next to us. Her legs hang over on to his lap or the empty seat! She fell asleep nursing on takeoff and I held off as long as I could but finally had to get up to use the restroom. She woke up when I had to move and of course wouldn't go back to sleep. The next flight we had an open seat next to us and we got to bring her car seat onboard which was really nice b/c after she fell asleep nursing I put her in the car seat and she took a nice nap. We could move around and she remained asleep. This is the first trip we've taken her big girl convertible car seat and she seems to really like facing forward in the back middle seat of the SUV with a great view. (We've kept her rear facing in the convertible seat at home).
The first night was rough for Kaia (huge time zone difference and new environment), but she is sleeping in late this morning so I wanted to post some photos of our first day at the beach. She loved to stand at the edge of the water and squealed gleefully as the waves approached and got her legs wet. She'd laugh as they'd recede and then squeal all over again as they returned.
Eating is proving to be a challenge so far on thie trip - so many distractions - but she is drinking from her straw cup and nursing great. Yesterday we broke down and added carnation breakfast to her drink since she wasn't eating food great and then she really didn't want to eat. I swear that stuff is baby crack. It makes the milk taste like vanilla soft serve ice cream (which she loves). She fills up on it and doesn't want to eat food. I think we'll have to try feeding her or offerring the food before she sees the cup. If she sees it she just points to it and vocalizes until she can have it. She is also getting super independent and wants to feed herself so badly and not have us help her scoop or bring the spoon to her mouth, but most of the time she twists the spoon and the food falls off or she flings it just to watch it go flying. Aah, the joys of feeding a toddler.
We've also seen lots of wildlife so far. From our deck at the resort looking on to the golf course: wild turkeys, herds of wild goats, and a very friendly black cat. At the beack: sea turtles, kentucky cardinals, and lots of fish.
Well, I've tried several times to upload pictures but the internet connection here sucks so I'll have to do that once we're home. For now, Aloha!
Sunday, March 29, 2009
Friday, March 20, 2009
Ride on, my girl
Last week Kaia’s PT suggested we look into getting Kaia a ride on toy. Kaia had one that her grandparents had purchased brand new for her last year that converted from a sit down ride on car to a push toy. She loved the push toy aspect of it but she’s so tall that it was just too low for her to use as a ride on toy.
It’s still too early for garage sales so I checked out craigslist. It’s a little pricier than garage sales in general but sometimes you can find exactly what you’re looking for without driving to a bunch of sales.
I picked up this toy on Sunday afternoon. It was in great shape, had never been used outside, and cost only 10 bucks. We put batteries in it and Kaia loved pushing all the keys and buttons. She’s really isolating her pointer finger to push now. I tried to show her how to use her legs to push but she just didn’t quite get it.
On Wednesday her PT made her weekly visit and worked with Kaia for about a half hour on the ride on toy. She helped Kaia put her legs back up on her toes and assisted her to push the toy backwards with her feet. By the end, Kaia was then pushing the toy forward if you prompted her with the backward assist. She still wouldn’t keep going though. I continued to work with her after the PT left until her nap. Right after lunch she pointed and vocalized to her toy so I assisted her on to it by helping her shift her weight to one leg and again prompted her by giving her the backwards assist. Kaia pushed forward and then kept going! It’s so cool to see her getting it, to see that connection form in her brain, to see her learn and progress. She loves this toy, and hubby had to admit it was a good buy!
It’s still too early for garage sales so I checked out craigslist. It’s a little pricier than garage sales in general but sometimes you can find exactly what you’re looking for without driving to a bunch of sales.
I picked up this toy on Sunday afternoon. It was in great shape, had never been used outside, and cost only 10 bucks. We put batteries in it and Kaia loved pushing all the keys and buttons. She’s really isolating her pointer finger to push now. I tried to show her how to use her legs to push but she just didn’t quite get it.
On Wednesday her PT made her weekly visit and worked with Kaia for about a half hour on the ride on toy. She helped Kaia put her legs back up on her toes and assisted her to push the toy backwards with her feet. By the end, Kaia was then pushing the toy forward if you prompted her with the backward assist. She still wouldn’t keep going though. I continued to work with her after the PT left until her nap. Right after lunch she pointed and vocalized to her toy so I assisted her on to it by helping her shift her weight to one leg and again prompted her by giving her the backwards assist. Kaia pushed forward and then kept going! It’s so cool to see her getting it, to see that connection form in her brain, to see her learn and progress. She loves this toy, and hubby had to admit it was a good buy!
Sunday, March 15, 2009
Weekly roundup
Kaia’s Aunty Karen recently bought Kaia this book. Kaia, in the last couple weeks, started pushing the buttons which motivated me to start looking into augmentative communication. We know that kids with her syndrome, in spite of having a limited vocal vocabulary, are often very successful at using complex augmentative communication systems. So, I spent the lion’s share of last Sunday and Monday trying to figure out if our early intervention program would cover augmentative communication devices. I finally discovered after much pestering of Kaia’s service coordinator that we could get her an augmentative communication evaluation. I’ve heard that if she does well and they think she may have the ability to be successful with a device, we may be able to borrow or rent different ones. Getting this evaluation, along with several experiences with our early intervention program over the past few months, cemented what I’ve been learning, which is this: no one will necessarily look out for your child or offer what may be incredibly helpful services for your child. You have to do your own research and advocate for what is best for your child.
Vital Stats – On Thursday, Kaia’s nutritionist/dietician made a visit and weighed and measured her. Kaia weighed in at 24 lbs 13 oz bare naked, and is 34 and ¾ inches tall. That’s an increase of 1 lb and 11 oz and 1 full inch since the dietician’s last visit Jan 16th! Kaia really is a tall, thin drink of water. But something is working! She’s gaining weight and height. We’ve recently discovered that Kaia loves Haagen Daaz ice cream (260 calories in one little serving container. She never eats the whole serving in one shot; it usually lasts a couple days).
We absolutely love Kaia’s speech therapist. In addition to all the speech and language play she does with Kaia. she also started a feeding therapy with her that is deceptively simple. She takes the pressure completely off of eating and does it outside of the highchair, using foods that I want Kaia to eat: crunchy/chewy snack stuff that she has to chew. It is a very positive experience for Kaia; any attempt made by her to mouth, lick and/or bite down merits lots of praise and clapping. We all participate and at the first sign of distress Kaia can put the offending food in an all-done container. It wastes a lot of food but it definitely is worth it. Kaia frequently prefers to try to feed us, but she will and loves to have me “kiss” her with the cracker/whatever in my mouth. This is actually how she initially started allowing these foods to come close to her mouth. She is now at a point where she even retracts her tongue and attempts to bite down on the food when I “kiss” her with it. It’s all very fun, there’s lot of smiling, giggling and chortling going on. Kaia was starting to chew this weekend while eating and I know that it is because of this type of activity.
On the respite front, we finally! selected a provider. We learned that the annual budget operates on a fiscal calendar from July 1st to Jun 30th which means that we have just over 3 months to use up our annual allotment of respite hours or lose them. I found a trusted old coworker who is willing to do all of the hours we have available. So, if we want, we can have two 4-hour evenings of respite each week until Jun 30th. While this is tremendously exciting, I’m a little nervous to be away from Kaia so much. However, I completely trust this person and that brings such peace of mind.
Speaking of respite, this past weekend we took Kaia to two Parent’s Nights Out programs in a row. The PNO we’ve been using through Easter Seals Crossroads expanded their program and parents can now bring their child two times a month. We also found a church that offers a quarterly PNO so we had Kaia attend that for the first time on Saturday. Both programs were great and seemed extremely well organized. I can not even say how great it was to be able to go out to eat and just talk. We rarely have time to do that – to just focus on each other. We really tried to follow some wonderful relationship advice and not discuss the child(ren), jobs, or money. Instead, we just focused on each other. It was so refreshing.
In other Kaia news: Kaia loves, loves, loves clapping and will now bring both pointer fingers to her face dimples area to initiate or imitate “when you’re happy and you know it” song. If we don’t clap for her when she is expecting it she will take both of our hands and bring them together to have us clap for her. I think this is also a revival of the game “close together, far apart” that we’d play with her while she was practicing balancing standing to get her to be able to move her arms to different positions and still keep her balance. She’s also kissing like crazy but does these open-mouth, drooling French kisses that we absolutely adore.
And, finally, probably the best part of the weekend for me: We Went Running! In my former life before Kaia, I ran. Hubby and I ran in half marathons and enjoyed the bonding and health benefits. After Kaia, I was determined to get back into running, and I fought valiantly for several months. I registered for the mini marathon in Indianapolis and tried and tried to train. At best, it was incredibly difficult to even complete a training run on the treadmill while Kaia was napping. One day it took 3 of her naps for me to complete my run. As Kaia got older, I didn’t want to strap her into a stroller, immobile, during the precious little time that she could be learning by moving her own body. I was expecting way too much from myself and it was stressing me out no end. Most days I was lucky to get a shower. I finally decided to accept that for the time being, running just wasn’t going to be a part of my life.
And now, a new chapter is beginning. For the past few weeks with the spurts of warmer weather, Paul and I have been saying that we should attempt a run and see how Kaia handled it. We went tonight and Kaia loved it! She pointed out and squealed at the deer in the park, laughed when I ran past the stroller, and enjoyed the music we listened to from the speaker on my cell phone. It was so great! My knees are a little stiff but I am finally starting to reconcile her need for movement with my own. I think a couple necessary things are happening: she’s started walking and I’m seeing the amazing progress she’s making with her gross motor skills. I know that having her in the stroller a few times a week while we run isn’t going to be the end of her progress. We still are very conscious of her need to move and made sure that when we finished our run, while we were stretching, she got out of the stroller and had the opportunity to walk around on the grass. She enjoyed all the antics of our stretching positions. Then, when we got home, we gave her more opportunities to push her toys and walk outside again. The other necessary thing, aided by the positive experience of our parent’s night out, is that I’m realizing we really do need to do things for us - that not everything can be about and be defined by what is best for Kaia. We are a family and our needs matter too. Part of me can’t even believe I’m saying that but I know that I need to take care of me too. My whole world is taking care of Kaia. Next comes my husband and his wants and needs, and last is me. It’s been too long. So, while I’m not signing up for the next half marathon yet, I am going to try to run a few times a week. Just for me.
Vital Stats – On Thursday, Kaia’s nutritionist/dietician made a visit and weighed and measured her. Kaia weighed in at 24 lbs 13 oz bare naked, and is 34 and ¾ inches tall. That’s an increase of 1 lb and 11 oz and 1 full inch since the dietician’s last visit Jan 16th! Kaia really is a tall, thin drink of water. But something is working! She’s gaining weight and height. We’ve recently discovered that Kaia loves Haagen Daaz ice cream (260 calories in one little serving container. She never eats the whole serving in one shot; it usually lasts a couple days).
We absolutely love Kaia’s speech therapist. In addition to all the speech and language play she does with Kaia. she also started a feeding therapy with her that is deceptively simple. She takes the pressure completely off of eating and does it outside of the highchair, using foods that I want Kaia to eat: crunchy/chewy snack stuff that she has to chew. It is a very positive experience for Kaia; any attempt made by her to mouth, lick and/or bite down merits lots of praise and clapping. We all participate and at the first sign of distress Kaia can put the offending food in an all-done container. It wastes a lot of food but it definitely is worth it. Kaia frequently prefers to try to feed us, but she will and loves to have me “kiss” her with the cracker/whatever in my mouth. This is actually how she initially started allowing these foods to come close to her mouth. She is now at a point where she even retracts her tongue and attempts to bite down on the food when I “kiss” her with it. It’s all very fun, there’s lot of smiling, giggling and chortling going on. Kaia was starting to chew this weekend while eating and I know that it is because of this type of activity.
On the respite front, we finally! selected a provider. We learned that the annual budget operates on a fiscal calendar from July 1st to Jun 30th which means that we have just over 3 months to use up our annual allotment of respite hours or lose them. I found a trusted old coworker who is willing to do all of the hours we have available. So, if we want, we can have two 4-hour evenings of respite each week until Jun 30th. While this is tremendously exciting, I’m a little nervous to be away from Kaia so much. However, I completely trust this person and that brings such peace of mind.
Speaking of respite, this past weekend we took Kaia to two Parent’s Nights Out programs in a row. The PNO we’ve been using through Easter Seals Crossroads expanded their program and parents can now bring their child two times a month. We also found a church that offers a quarterly PNO so we had Kaia attend that for the first time on Saturday. Both programs were great and seemed extremely well organized. I can not even say how great it was to be able to go out to eat and just talk. We rarely have time to do that – to just focus on each other. We really tried to follow some wonderful relationship advice and not discuss the child(ren), jobs, or money. Instead, we just focused on each other. It was so refreshing.
In other Kaia news: Kaia loves, loves, loves clapping and will now bring both pointer fingers to her face dimples area to initiate or imitate “when you’re happy and you know it” song. If we don’t clap for her when she is expecting it she will take both of our hands and bring them together to have us clap for her. I think this is also a revival of the game “close together, far apart” that we’d play with her while she was practicing balancing standing to get her to be able to move her arms to different positions and still keep her balance. She’s also kissing like crazy but does these open-mouth, drooling French kisses that we absolutely adore.
And, finally, probably the best part of the weekend for me: We Went Running! In my former life before Kaia, I ran. Hubby and I ran in half marathons and enjoyed the bonding and health benefits. After Kaia, I was determined to get back into running, and I fought valiantly for several months. I registered for the mini marathon in Indianapolis and tried and tried to train. At best, it was incredibly difficult to even complete a training run on the treadmill while Kaia was napping. One day it took 3 of her naps for me to complete my run. As Kaia got older, I didn’t want to strap her into a stroller, immobile, during the precious little time that she could be learning by moving her own body. I was expecting way too much from myself and it was stressing me out no end. Most days I was lucky to get a shower. I finally decided to accept that for the time being, running just wasn’t going to be a part of my life.
And now, a new chapter is beginning. For the past few weeks with the spurts of warmer weather, Paul and I have been saying that we should attempt a run and see how Kaia handled it. We went tonight and Kaia loved it! She pointed out and squealed at the deer in the park, laughed when I ran past the stroller, and enjoyed the music we listened to from the speaker on my cell phone. It was so great! My knees are a little stiff but I am finally starting to reconcile her need for movement with my own. I think a couple necessary things are happening: she’s started walking and I’m seeing the amazing progress she’s making with her gross motor skills. I know that having her in the stroller a few times a week while we run isn’t going to be the end of her progress. We still are very conscious of her need to move and made sure that when we finished our run, while we were stretching, she got out of the stroller and had the opportunity to walk around on the grass. She enjoyed all the antics of our stretching positions. Then, when we got home, we gave her more opportunities to push her toys and walk outside again. The other necessary thing, aided by the positive experience of our parent’s night out, is that I’m realizing we really do need to do things for us - that not everything can be about and be defined by what is best for Kaia. We are a family and our needs matter too. Part of me can’t even believe I’m saying that but I know that I need to take care of me too. My whole world is taking care of Kaia. Next comes my husband and his wants and needs, and last is me. It’s been too long. So, while I’m not signing up for the next half marathon yet, I am going to try to run a few times a week. Just for me.
Monday, March 9, 2009
On the go, go, go
This past weekend was go, go, go. Saturday was a balmy 70 degree day here in Indy. We decided to head to the zoo. We purchased an annual zoo membership in December after being entranced by the Christmas light displays and zoo hours open until 8pm. Then January and February set in. Frigid, raw cold. No zoo for us.
I think every family with small children all had the same idea Saturday. It was stroller central. It’s funny. I’ve noticed our stroller usage is different than how other parents utilize a stroller. While other parents will use the stroller as transportation for the child, we use it to haul our huge diaper bag, my purse, etc, and have Kaia push the stroller. Unless, like on Saturday, we have Kaia nap in it – which normally I never, ever do because I am a total nap slave. She needs to sleep in her crib. I revise that – I need her to sleep in her crib. I need that break each day. It’s just funny to see all these other kiddos hanging out, chillin’ in their ride, while Kaia, with proud intent, determinedly pushes her stroller along. I want her to have every opportunity to move her body, to know how to use her body for her own transportation.
I had to nurse Kaia a couple times at the zoo and it was pretty inconvenient. There’s no real great place at the zoo to nurse a toddler. We found an empty amphitheatre but later another Spanish-speaking family and children were hanging there too. There was no other place to go so I nursed her there while all the kids played around us. I wondered for the first time if other people think Kaia might be getting a little old to be breastfeeding. I sat her up to pat her back and burp her and stood her up and realized how big she was getting. It was in stark contrast to a woman I had just witnessed in the women’s restroom nursing (or attempting to) an 11 day old baby. The baby looked like a little bird to me. She had to literally show the baby the nipple and after several attempts finally got the baby to latch on. Kaia was like that before too but now is like a little barracuda. She now lifts up my shirt if I make the milk sign to her. There was no way I could’ve nursed Kaia in that restroom. Every flush of the toilets and rocket launch noise of the hand dryers running intermittently would’ve prevented her from nursing.
Instead, I peacefully nursed Kaia in the amphitheatre, while I watched the large-by-North-American-standards Hispanic family kids play contentedly around us. My husband snoozed on a bench nearby. I felt the wind blowing gently through my hair and the sun shining on my face. My little girl suckled at my breast, and I sensed how truly good life was in that moment.
Kaia also continued hippotherapy last week. She was standing! while riding on the horse this week. She’s been riding a different horse than Molly (the white show pony on the first day). Her newest steed is a brown horse with white markings on the face. He has a thinner back. And, get this, his name is Fairy Tale. Can you believe that? Fairy Tale. How cute is that? After hipportherapy we went up to a friend’s house for a playdate. Kaia will be starting a new OT at the end of April and the only time she has to fit Kaia in is immediately following hippotherapy so we'll have to race back home to see her. Until then we're going to enjoy being out and about early in the day on those days. But the good thing is then we'll have Fridays completely therapy-free. I'm looking into another storytime we could go to on those open days or maybe we'll just do other fun stuff. It's so hard to get out with all her therapies. I'm also looking into starting her in a kindermusik class. The girl isn’t a bit overscheduled, is she?
Sunday we went to the circus in the late morning. I was so excited to go to the circus. We were all a bit disappointed, though. I remembered the childhood magic of the circus, but the reality of the thinly veiled animal mistreatment, borderline talent, annoyingly overamplified sounds, and the mixture of the smell of cotton candy and animal dung just wasn’t as magical as I’d remembered. $18 a seat wasn’t too magical either. We managed to stay for almost the entire show then Kaia had had it and got pretty cranky.
We also spent some quality time out in our front yard/driveway this weekend so that Kaia could practice walking/pushing her various toys. Our whole neighborhood comes alive in the spring. We don’t have a playground in our neighborhood so the kids really just play in the street. It sounds like the projects. It isn’t, but I do think these kids could use a decent place to play. All the kids come running when Paul is out with Kaia. He’s like the pied piper. He’s always been like that, even before we had Kaia. Back then it was all the neighborhood preteen boys (who are now, I can’t believe it, in college). Paul is the cool old guy. The guy that knows how to do all the skateboard tricks that their Dads can’t do. Paul had a half-pipe in his backyard growing up so he is more than a decent skateboarder. But all the kids are in awe of someone who is their Dad’s age throwing those kids of tricks, and ask “Are you sponsored?” I know he loves it.
One very cute little neighbor girl always come to see Kaia when we are out. She is such a sweet girl. She is 5 and will be starting kindergarten next fall. She just loves to come see Kaia. On Saturday we had Kaia’s wagon out, her fancy radio flyer wagon. She alternately likes to push and ride in it. The neighbor girl joyously insisted on pulling Kaia around in the wagon.
I had this image watching them as she pulled Kaia in the wagon down the sidewalk. I imagined them older, in high school. The girl is just over 3 years older than Kaia. I thought - maybe when they are older, in school - she will look out for Kaia. Maybe if she sees her in the hall or at lunch she will say hi to Kaia. Maybe she will set an example for how the other kids should treat people that are different. Maybe she will be a guardian angel of sorts for Kaia. I know that’s a lot to put on a 5 year old girl. But I’ve got my dreams.
What I love about this girl is that she never once has asked what happened to Kaia’s lip/nose. She has a bit of a speech issue – she stutters – so maybe she understands what it’s like to be different and sees past that. Or maybe her parents already have had the talk with her and explained things and told her not to ask. I don’t care. I just love it that she loves my girl.
It was so cute how she would copy how I interacted with Kaia. We’ve been teaching Kaia how to climb into her wagon herself (it’s pretty difficult b/c it has the high wooden sides attached to the metal wagon base) and the other girl took it upon herself to teach Kaia as well. She would repeat almost verbatim the things I and Paul said to Kaia. What power we adults have, for better or worse, on children. I forget that sometimes. It surprised me to see that we have that over other children, not just our own.
All in all, it was a pretty good weekend.
I think every family with small children all had the same idea Saturday. It was stroller central. It’s funny. I’ve noticed our stroller usage is different than how other parents utilize a stroller. While other parents will use the stroller as transportation for the child, we use it to haul our huge diaper bag, my purse, etc, and have Kaia push the stroller. Unless, like on Saturday, we have Kaia nap in it – which normally I never, ever do because I am a total nap slave. She needs to sleep in her crib. I revise that – I need her to sleep in her crib. I need that break each day. It’s just funny to see all these other kiddos hanging out, chillin’ in their ride, while Kaia, with proud intent, determinedly pushes her stroller along. I want her to have every opportunity to move her body, to know how to use her body for her own transportation.
I had to nurse Kaia a couple times at the zoo and it was pretty inconvenient. There’s no real great place at the zoo to nurse a toddler. We found an empty amphitheatre but later another Spanish-speaking family and children were hanging there too. There was no other place to go so I nursed her there while all the kids played around us. I wondered for the first time if other people think Kaia might be getting a little old to be breastfeeding. I sat her up to pat her back and burp her and stood her up and realized how big she was getting. It was in stark contrast to a woman I had just witnessed in the women’s restroom nursing (or attempting to) an 11 day old baby. The baby looked like a little bird to me. She had to literally show the baby the nipple and after several attempts finally got the baby to latch on. Kaia was like that before too but now is like a little barracuda. She now lifts up my shirt if I make the milk sign to her. There was no way I could’ve nursed Kaia in that restroom. Every flush of the toilets and rocket launch noise of the hand dryers running intermittently would’ve prevented her from nursing.
Instead, I peacefully nursed Kaia in the amphitheatre, while I watched the large-by-North-American-standards Hispanic family kids play contentedly around us. My husband snoozed on a bench nearby. I felt the wind blowing gently through my hair and the sun shining on my face. My little girl suckled at my breast, and I sensed how truly good life was in that moment.
Kaia also continued hippotherapy last week. She was standing! while riding on the horse this week. She’s been riding a different horse than Molly (the white show pony on the first day). Her newest steed is a brown horse with white markings on the face. He has a thinner back. And, get this, his name is Fairy Tale. Can you believe that? Fairy Tale. How cute is that? After hipportherapy we went up to a friend’s house for a playdate. Kaia will be starting a new OT at the end of April and the only time she has to fit Kaia in is immediately following hippotherapy so we'll have to race back home to see her. Until then we're going to enjoy being out and about early in the day on those days. But the good thing is then we'll have Fridays completely therapy-free. I'm looking into another storytime we could go to on those open days or maybe we'll just do other fun stuff. It's so hard to get out with all her therapies. I'm also looking into starting her in a kindermusik class. The girl isn’t a bit overscheduled, is she?
Sunday we went to the circus in the late morning. I was so excited to go to the circus. We were all a bit disappointed, though. I remembered the childhood magic of the circus, but the reality of the thinly veiled animal mistreatment, borderline talent, annoyingly overamplified sounds, and the mixture of the smell of cotton candy and animal dung just wasn’t as magical as I’d remembered. $18 a seat wasn’t too magical either. We managed to stay for almost the entire show then Kaia had had it and got pretty cranky.
We also spent some quality time out in our front yard/driveway this weekend so that Kaia could practice walking/pushing her various toys. Our whole neighborhood comes alive in the spring. We don’t have a playground in our neighborhood so the kids really just play in the street. It sounds like the projects. It isn’t, but I do think these kids could use a decent place to play. All the kids come running when Paul is out with Kaia. He’s like the pied piper. He’s always been like that, even before we had Kaia. Back then it was all the neighborhood preteen boys (who are now, I can’t believe it, in college). Paul is the cool old guy. The guy that knows how to do all the skateboard tricks that their Dads can’t do. Paul had a half-pipe in his backyard growing up so he is more than a decent skateboarder. But all the kids are in awe of someone who is their Dad’s age throwing those kids of tricks, and ask “Are you sponsored?” I know he loves it.
One very cute little neighbor girl always come to see Kaia when we are out. She is such a sweet girl. She is 5 and will be starting kindergarten next fall. She just loves to come see Kaia. On Saturday we had Kaia’s wagon out, her fancy radio flyer wagon. She alternately likes to push and ride in it. The neighbor girl joyously insisted on pulling Kaia around in the wagon.
I had this image watching them as she pulled Kaia in the wagon down the sidewalk. I imagined them older, in high school. The girl is just over 3 years older than Kaia. I thought - maybe when they are older, in school - she will look out for Kaia. Maybe if she sees her in the hall or at lunch she will say hi to Kaia. Maybe she will set an example for how the other kids should treat people that are different. Maybe she will be a guardian angel of sorts for Kaia. I know that’s a lot to put on a 5 year old girl. But I’ve got my dreams.
What I love about this girl is that she never once has asked what happened to Kaia’s lip/nose. She has a bit of a speech issue – she stutters – so maybe she understands what it’s like to be different and sees past that. Or maybe her parents already have had the talk with her and explained things and told her not to ask. I don’t care. I just love it that she loves my girl.
It was so cute how she would copy how I interacted with Kaia. We’ve been teaching Kaia how to climb into her wagon herself (it’s pretty difficult b/c it has the high wooden sides attached to the metal wagon base) and the other girl took it upon herself to teach Kaia as well. She would repeat almost verbatim the things I and Paul said to Kaia. What power we adults have, for better or worse, on children. I forget that sometimes. It surprised me to see that we have that over other children, not just our own.
All in all, it was a pretty good weekend.
Wednesday, March 4, 2009
Alternative therapy
Last Friday I took Kaia to an alternative type of therapy. Another mom I know that has a kid with cerebral palsy was frustrated with the progress her son was making in traditional therapy and with the lack of creativity of the therapists. She researched other types of therapies and found one called the Anat Baniel Method, based on the work of Feldenkrais. More info at: http://www.anatbanielmethod.com/help-children-overview.htm There were no practitioners of this particular type of therapy in our city. The closest was in Chicago, a three hour drive away. So, desperate to try anything that might help her son, she drove him up to Chicago to do this alternative therapy. Thankfully her insurance is covering the cost (or at least part of it) of the therapy.
Being part of a group of moms with kids with movement issues, she and the practitioner decided to gauge interest by having the practitioner come to Indianapolis for a weekend and offer a free trial session to kids here. I jumped at the chance to give Kaia the opportunity to experience this alternative therapy free here in town.
I have to admit I was skeptical. Some of the tenets of the therapy I agree with partly, in principle. For instance, they advise no orthotics. We actually waited quite a while before finally getting orthotics for Kaia. My concern was that she would never strengthen her ankles, which pronate, if they were fixed in orthotics. I finally relented to the idea that if we give her that support, she would have an opportunity to strengthen the other muscles needed for walking by being able to have the stability to try it. The Anat Baniel practitioner (she’s not a licensed OT or PT) also advised us not to assist Kaia walking by holding one of her hands. The idea as I understand it (which may be completely wrong) is not to force a child to be more upright than they are ready to be. The woman, after having me remove Kaia’s shoes and orthotics, spent most of the time touching/stimulating Kaia’s feet in a sitting position. She also touched her back. She didn’t mind Kaia being in, and didn’t force her out of, a w-sit position.
I still don’t really completely understand the theory behind it. Perhaps she didn’t do a very good job explaining it or maybe I just didn’t listen well. The other mom’s kid and Kaia have the same physical therapist. This PT was there observing for the session (The other mom had scheduled the PT to be there to watch her son’s session and the PT stayed for Kaia’s upon my request). I could tell she was trying very hard to be respectful by asking questions regarding the how/why of what the woman was doing. I didn’t think the practitioner provided an adequate explanation to her either. There definitely was some tension in the air. It pretty much is the complete opposite of everything that we’ve been told by traditional therapy to do with Kaia.
Kaia is tactilely defensive and did an admirable job putting up with all the touching. But fairly quickly she started to push the woman away and started signing “all done” and “bye bye” to her. I felt a little guilty forcing Kaia to submit to this therapy and yet I force her to do things that she doesn’t necessarily want to do all the time because it’s good for her – changing her diaper, brushing her teeth, etc. Inwardly, I was elated to see Kaia communicating her desires, even if I couldn’t fulfill her request. Thankfully the woman discovered some quirky things Kaia likes. Kaia warmed up to her so much that by the end she was trying to kiss the practitioner.
Anyway, the upshot is that if the practitioner generates enough interest, we could bring Kaia for sessions with her when she comes to town for a cost of $95 per hour. It’s actually unusual for insurance to cover it. I told her I’d check with our insurance to see if they would cover it because otherwise we really couldn’t afford it.
That same evening we brought Kaia to the monthly parents night out program. When we picked her up, Paul took her by the hand to assist her to walk down the hall. Wouldn’t you know it, she pulled her hand away and walked - on her own - the entire length of the hallway. It was at least 25 feet. The only reason she stopped was because the hall ended. We’ve had these breakthroughs before but she will usually revert to crawling almost immediately. So I didn’t hold my breath that it would remain consistent. She definitely has been on the cusp of walking for a couple months now, though.
Saturday we took her swimming in the morning and shopping in the evening. She was off and on with the walking. On Sunday, we put her therapy shorts on her. They’re called hip helpers, are bright red spandex, and she looks like a little super hero wearing them. She took off on Sunday! She walked at least 50 feet continuously and even made a 45 degree turn on her own in the middle of that stretch. She’s kept at it; alternating between doing really well or not being as motivated when she’s tired and/or hungry.
But she really can and is walking! She still falls a lot and walks with a wide base of support (the shorts do help with that), but she can do it! She can also climb up on to the couch by herself now! (That started late last week). Even after coming down with a cold Monday morning, which has thrown her balance off in the past (one of her therapists attributed that to increased fluid in the ear, which is the center of balance), she has continued to persevere in attempting to walk this week.
She also made the “help” sign to me, independently, without any prompting, today. Holy cow, was I surprised. Then she did it again a few more times. She also has said “bubbles” and “more” a couple times this week. She just loves those bubbles.
So what do you all think? Do you think she was just ready, no matter what? Do you think it was the one alternative therapy session? Do you think it was the hippotherapy (she’s gone 3 times now)? Maybe it’s the confluence of it all.
I wish I knew, but in the end I guess it doesn’t really matter. I accepted long ago that all we can do is maximize Kaia’s environment and provide opportunities for her to progress. She’s going to do it in her own time. I’m constantly amazed by her perseverance and her abilities in spite of the incredible challenges that she faces.
Being part of a group of moms with kids with movement issues, she and the practitioner decided to gauge interest by having the practitioner come to Indianapolis for a weekend and offer a free trial session to kids here. I jumped at the chance to give Kaia the opportunity to experience this alternative therapy free here in town.
I have to admit I was skeptical. Some of the tenets of the therapy I agree with partly, in principle. For instance, they advise no orthotics. We actually waited quite a while before finally getting orthotics for Kaia. My concern was that she would never strengthen her ankles, which pronate, if they were fixed in orthotics. I finally relented to the idea that if we give her that support, she would have an opportunity to strengthen the other muscles needed for walking by being able to have the stability to try it. The Anat Baniel practitioner (she’s not a licensed OT or PT) also advised us not to assist Kaia walking by holding one of her hands. The idea as I understand it (which may be completely wrong) is not to force a child to be more upright than they are ready to be. The woman, after having me remove Kaia’s shoes and orthotics, spent most of the time touching/stimulating Kaia’s feet in a sitting position. She also touched her back. She didn’t mind Kaia being in, and didn’t force her out of, a w-sit position.
I still don’t really completely understand the theory behind it. Perhaps she didn’t do a very good job explaining it or maybe I just didn’t listen well. The other mom’s kid and Kaia have the same physical therapist. This PT was there observing for the session (The other mom had scheduled the PT to be there to watch her son’s session and the PT stayed for Kaia’s upon my request). I could tell she was trying very hard to be respectful by asking questions regarding the how/why of what the woman was doing. I didn’t think the practitioner provided an adequate explanation to her either. There definitely was some tension in the air. It pretty much is the complete opposite of everything that we’ve been told by traditional therapy to do with Kaia.
Kaia is tactilely defensive and did an admirable job putting up with all the touching. But fairly quickly she started to push the woman away and started signing “all done” and “bye bye” to her. I felt a little guilty forcing Kaia to submit to this therapy and yet I force her to do things that she doesn’t necessarily want to do all the time because it’s good for her – changing her diaper, brushing her teeth, etc. Inwardly, I was elated to see Kaia communicating her desires, even if I couldn’t fulfill her request. Thankfully the woman discovered some quirky things Kaia likes. Kaia warmed up to her so much that by the end she was trying to kiss the practitioner.
Anyway, the upshot is that if the practitioner generates enough interest, we could bring Kaia for sessions with her when she comes to town for a cost of $95 per hour. It’s actually unusual for insurance to cover it. I told her I’d check with our insurance to see if they would cover it because otherwise we really couldn’t afford it.
That same evening we brought Kaia to the monthly parents night out program. When we picked her up, Paul took her by the hand to assist her to walk down the hall. Wouldn’t you know it, she pulled her hand away and walked - on her own - the entire length of the hallway. It was at least 25 feet. The only reason she stopped was because the hall ended. We’ve had these breakthroughs before but she will usually revert to crawling almost immediately. So I didn’t hold my breath that it would remain consistent. She definitely has been on the cusp of walking for a couple months now, though.
Saturday we took her swimming in the morning and shopping in the evening. She was off and on with the walking. On Sunday, we put her therapy shorts on her. They’re called hip helpers, are bright red spandex, and she looks like a little super hero wearing them. She took off on Sunday! She walked at least 50 feet continuously and even made a 45 degree turn on her own in the middle of that stretch. She’s kept at it; alternating between doing really well or not being as motivated when she’s tired and/or hungry.
But she really can and is walking! She still falls a lot and walks with a wide base of support (the shorts do help with that), but she can do it! She can also climb up on to the couch by herself now! (That started late last week). Even after coming down with a cold Monday morning, which has thrown her balance off in the past (one of her therapists attributed that to increased fluid in the ear, which is the center of balance), she has continued to persevere in attempting to walk this week.
She also made the “help” sign to me, independently, without any prompting, today. Holy cow, was I surprised. Then she did it again a few more times. She also has said “bubbles” and “more” a couple times this week. She just loves those bubbles.
So what do you all think? Do you think she was just ready, no matter what? Do you think it was the one alternative therapy session? Do you think it was the hippotherapy (she’s gone 3 times now)? Maybe it’s the confluence of it all.
I wish I knew, but in the end I guess it doesn’t really matter. I accepted long ago that all we can do is maximize Kaia’s environment and provide opportunities for her to progress. She’s going to do it in her own time. I’m constantly amazed by her perseverance and her abilities in spite of the incredible challenges that she faces.
Monday, March 2, 2009
The diet I'd like to have
I don’t know if every mom worries about how much their child eats but since the day Kaia was born I’ve been, I think you could accurately say, obsessed with how to maximize the calories that go in her body. Kids with her syndrome are usually described as “tall and thin”, but when we went to the biannual international conference for her syndrome last summer and saw some of the older kids, I wouldn’t hesitate to use the word emaciated to describe them. Feeding tubes, especially in infancy, are not uncommon. Throw in a diagnosis of dysphagia and cleft lip and palate, and it creates the perfect storm for a paranoid mother. While everyone – doctors, therapists, her nutritionist, and family members, recognizes that she is gaining weight and doing fine and concludes therefore that I’m worrying too much – I know otherwise. I know she is doing so well because of all the painstaking care I’ve gone to in making sure she gets the most bang for the buck calorie-wise. I’ve gone so far as letting breastmilk sit in the fridge for a day or two to allow the cream to rise, then skimmed the cream and added it to her other foods. I offer her at least 4 meals a day plus opportunities to nurse. If Kaia does end up needing more extreme nutritional intervention, it won’t be for a lack of my trying to avoid that. I know that a lot of you reading have kids who require tube feeds. I don’t doubt that you did everything you could to avoid that too. Sometimes no matter what you do a kid needs that extra help. I’d like to share a sampling of some of Kaia’s dietary staples, in hopes that another parent may find it helpful or even share some tips with me.
Kaia's ultra fattening (but healthy) mac-n-cheese
16 oz pasta (I use whole wheat Kroger brand salad rotini pasta)
1/2 c butter (the real stuff, unsalted)
1/3 c flour (I use whole wheat flour)
2 c whole milk
4 c shredded cheddar cheese (use the full-fat, no reduced fat here)
1 container 12 oz small curd cottage cheese 4% milkfat (the full fat stuff again)
2 lg eggs, beaten
Preheat oven to 350
Cook pasta, drain
Melt butter over low heat, whisk in flour for 1 min. Whisk in milk. Cook over med heat whisking constantly until misture is thickened and bubbly. Stir in cheese and remaining ingredients. Stir in pasta. Spoon mixture in large casserole baking dish. Bake at 350 for 30 minutes.
I double this recipe, then spoon into portions on wax paper and freeze it, then put in large gallon size ziplocs. I use two frozen chunks, mix in a vegetable like cooked chopped kale, microwave, and voila! instant lunch/dinner.
Other favorites:
Spaghetti - just whole wheat spagetti mixed with jarred spaghetti sauce and lots of whole milk ricotta cheese. She loves this stuff. It's high calorie and healthy.
I feed her half an egg yolk and about 1/8th an avocado every morning. I boil the eggs, let then cool in fridge, peel, cut in half, and freeze the egg yolks for Kaia. Paul & I eat the egg whites. Same principle for the avocado: I buy in bulk at Sam’s Club, and cut in 1/8ths when it's ripe and freeze the sections. That way it never turns brown.
Another great recipe but one that Kaia wasn’t too hot on so I’ve haven’t made it again: Cooked brown rice with coconut milk (I bought the coconut milk canned, the full fat version has 120 calories in 1/3 cup and 10 grams of fat!) and a little cinnamon and diced pineapples and oranges mixed in.
She also has liked the mini pancakes Kroger brand (they smell like chocolate chip cookies when heated) smeared with butter. I'm sure they're not ultra healthy but she has loved them in the past. Spreading almond butter on the pancakes is another great way to increase the protein and calories. I haven't introduced peanuts yet.
Grilled cheese sandwiches are super easy and relatively healthy if made with whole wheat bread. Just melt butter in pan, put in whole wheat bread slice topped with full-fat velveeta and again, instant meal! I tried regular cheese and she likes velveeta better.
Kaia does eat some of the foods we do – she’s had turkey and peas, sweet potatoes and meatballs, and fish from our dinners. I've given her other things that we eat too. I usually just try to add different types of cheeses or butter to increase the calories/fat content. Some of the morningstar farms frozen appetizers like portabello mushroom bites, or broccoli and cheddar bites are actually pretty high calorie too.
Oh, another one of her favorites in crab salad. You know, the fake crab meat stuff? I mix that with full fat cream cheese, real mayo, and real butter, and she loves it.
Kaia still has trouble with oral motor skills (chewing) so we fork mash just about everything. She can handle small pieces of banana or grilled cheese but she isn't really chewing yet - just mashing it around in her mouth. She recently started biting off crunchy bits of graham crackers so we’re hoping this means her oral motor skills are improving.
A disclaimer: we use whole wheat bread and grain products. I know some parents feed their kids a wheat-free, dairy-free diet (or gluten free, casein free, I’m not really sure what the difference is). Many of the kids with Kaia’s syndrome exhibit autistic-like traits and I know this is a popular intervention for autism. I looked into it but didn’t see any real hard data to support the drastic change that diet requires. If you know of anything different (valid scientific data supporting the diet), please let me know.
For those of you with kids who struggle to gain/maintain weight or have feeding issues, do you do anything else to encourage weight gain? Any favorite recipes or tips you’d like to share?
Kaia's ultra fattening (but healthy) mac-n-cheese
16 oz pasta (I use whole wheat Kroger brand salad rotini pasta)
1/2 c butter (the real stuff, unsalted)
1/3 c flour (I use whole wheat flour)
2 c whole milk
4 c shredded cheddar cheese (use the full-fat, no reduced fat here)
1 container 12 oz small curd cottage cheese 4% milkfat (the full fat stuff again)
2 lg eggs, beaten
Preheat oven to 350
Cook pasta, drain
Melt butter over low heat, whisk in flour for 1 min. Whisk in milk. Cook over med heat whisking constantly until misture is thickened and bubbly. Stir in cheese and remaining ingredients. Stir in pasta. Spoon mixture in large casserole baking dish. Bake at 350 for 30 minutes.
I double this recipe, then spoon into portions on wax paper and freeze it, then put in large gallon size ziplocs. I use two frozen chunks, mix in a vegetable like cooked chopped kale, microwave, and voila! instant lunch/dinner.
Other favorites:
Spaghetti - just whole wheat spagetti mixed with jarred spaghetti sauce and lots of whole milk ricotta cheese. She loves this stuff. It's high calorie and healthy.
I feed her half an egg yolk and about 1/8th an avocado every morning. I boil the eggs, let then cool in fridge, peel, cut in half, and freeze the egg yolks for Kaia. Paul & I eat the egg whites. Same principle for the avocado: I buy in bulk at Sam’s Club, and cut in 1/8ths when it's ripe and freeze the sections. That way it never turns brown.
Another great recipe but one that Kaia wasn’t too hot on so I’ve haven’t made it again: Cooked brown rice with coconut milk (I bought the coconut milk canned, the full fat version has 120 calories in 1/3 cup and 10 grams of fat!) and a little cinnamon and diced pineapples and oranges mixed in.
She also has liked the mini pancakes Kroger brand (they smell like chocolate chip cookies when heated) smeared with butter. I'm sure they're not ultra healthy but she has loved them in the past. Spreading almond butter on the pancakes is another great way to increase the protein and calories. I haven't introduced peanuts yet.
Grilled cheese sandwiches are super easy and relatively healthy if made with whole wheat bread. Just melt butter in pan, put in whole wheat bread slice topped with full-fat velveeta and again, instant meal! I tried regular cheese and she likes velveeta better.
Kaia does eat some of the foods we do – she’s had turkey and peas, sweet potatoes and meatballs, and fish from our dinners. I've given her other things that we eat too. I usually just try to add different types of cheeses or butter to increase the calories/fat content. Some of the morningstar farms frozen appetizers like portabello mushroom bites, or broccoli and cheddar bites are actually pretty high calorie too.
Oh, another one of her favorites in crab salad. You know, the fake crab meat stuff? I mix that with full fat cream cheese, real mayo, and real butter, and she loves it.
Kaia still has trouble with oral motor skills (chewing) so we fork mash just about everything. She can handle small pieces of banana or grilled cheese but she isn't really chewing yet - just mashing it around in her mouth. She recently started biting off crunchy bits of graham crackers so we’re hoping this means her oral motor skills are improving.
A disclaimer: we use whole wheat bread and grain products. I know some parents feed their kids a wheat-free, dairy-free diet (or gluten free, casein free, I’m not really sure what the difference is). Many of the kids with Kaia’s syndrome exhibit autistic-like traits and I know this is a popular intervention for autism. I looked into it but didn’t see any real hard data to support the drastic change that diet requires. If you know of anything different (valid scientific data supporting the diet), please let me know.
For those of you with kids who struggle to gain/maintain weight or have feeding issues, do you do anything else to encourage weight gain? Any favorite recipes or tips you’d like to share?
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