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Friday, February 27, 2015
Friday, April 25, 2014
Belated Easter
Peter and I are refreshed from our first big vacation away from James - Colorado was gorgeous and we had great weather for hiking and exploring outdoors. James stayed with Grandma and Grandpa in Delaware, and apparently he had a wonderful time. And got into no trouble, and went to sleep on time every day, and such things that he doesn't do for us at home :/ We are thrilled that he adapted so well to not having us around, which means his separation anxiety is fading. He loved having all the space to play in and the constant attention of multiple people around at all times.
For Easter, we placed eggs around the yard and he reluctantly found them. He wasn't too interested and had to be prompted, but he did enjoy opening the plastic eggs. Open/shut... that's more fun than candy for him right now.
Now that the weather is warmer, he's been going to the playground a lot and we've noticed a few things: 1) he's afraid to walk on cracks and 2) a slight incline is like a mountain to him. The playground we prefer has an inclined ramp, and he edges up that inch by inch with hands tightly clenched onto the railing, like he could fall off at any time. The swings are still a hit, but playing with other kids is still not something he's interested in.
Therapies are going well. PT and OT are doing great: working on balance in PT and finger isolation/fine motor skills in OT. ST is a bit slower; still no talking, and his silence sometimes a bit disquieting... but for the most part, it's not worrisome because he is progressing. He learned several hand signals and uses a picture exchange system (PECS) to communicate. He brings us the picture of what he wants and we give it. He finally has started to imitate gestures that I do with songs.
We have doctor visits in a few weeks, but we think that the high-calorie diet is working so we anticipate that this will be his last nutritionist consultation. Did we mention that as of last month he finally reached 20 pounds? At last!!
For Easter, we placed eggs around the yard and he reluctantly found them. He wasn't too interested and had to be prompted, but he did enjoy opening the plastic eggs. Open/shut... that's more fun than candy for him right now.
Now that the weather is warmer, he's been going to the playground a lot and we've noticed a few things: 1) he's afraid to walk on cracks and 2) a slight incline is like a mountain to him. The playground we prefer has an inclined ramp, and he edges up that inch by inch with hands tightly clenched onto the railing, like he could fall off at any time. The swings are still a hit, but playing with other kids is still not something he's interested in.
Therapies are going well. PT and OT are doing great: working on balance in PT and finger isolation/fine motor skills in OT. ST is a bit slower; still no talking, and his silence sometimes a bit disquieting... but for the most part, it's not worrisome because he is progressing. He learned several hand signals and uses a picture exchange system (PECS) to communicate. He brings us the picture of what he wants and we give it. He finally has started to imitate gestures that I do with songs.
We have doctor visits in a few weeks, but we think that the high-calorie diet is working so we anticipate that this will be his last nutritionist consultation. Did we mention that as of last month he finally reached 20 pounds? At last!!
Easter Egg Hunt
Playground Outing
Sunday, February 23, 2014
CHD Awareness & our toddler's heart
CHD Awareness week was February 7-14, and we took the photo of James showing his scar (below) as a part of the campaign to "Rock Your Scar". It's healing up nicely - so nicely it barely even shows in the picture! I also posted here a photo essay of our journey dealing with a CHD and encouraging continued awareness, research, and funding.
In more usual news, we followed up with the nutritionist recently and found that James has lost a bit of weight. He's still about 19.5 pounds, a fairly static weight for some months now, so we're moving to a new diet of a special high-calorie formula. He's making consistent improvement with handling solid food, but for the sake of calories, we can't move forward with weaning him from bottles... which is very frustrating. We'd love to reach the point where we can stop washing bottles and feed him normal meals alongside us.
Therapies are going well, and the other photo below shows his first rock climbing attempt! Here he could climb in an approved environment, as opposed to the furniture at home he gets into all sorts of trouble with. He's also got a new 2T winter coat - officially into toddler clothes - because despite his low weight, he is a normal-to-tall height.
Last but not least, some bigger updates: #1, we learned that James cannot fly until after surgery #3 unless he gets equipped with an oxygen tank... so basically, no flying. And #2, surgery 3 is on the calendar. This will be the Fontan, and is the second part of the Glenn-Fontan set of surgeries. It will complete what the Glenn started last year. We are looking at surgery in late spring 2015, shortly before his 3rd birthday.
Saturday, January 18, 2014
a little glimpse of James having fun
Not all is therapy and work for James... he's also growing up as a pretty normal and happy kid with plenty of activity and playtime. Here's a short video of our boy enjoying his bouncy ball and cracking himself up:
Friday, January 3, 2014
Snow day and a trip to Manhattan
Happy New Year! We spent a great holiday visiting both sides of our family, and James loved wreaking havoc and making a racket in so many different homes. Also, all the toys he got - he loves those too. His playroom is growing ever bigger and eating into our kitchen, bit by bit.
Today was declared officially a snow day in NYC, and schools were closed so Peter had the day off. But not the opportunity to sleep in - James had 2 doctor appointments scheduled today, and with the snow piling up in NYC, we left bright and early in anticipation of delays. 6 am wakeup to check on school closure, 7 am check in with the doctors to see if they still plan to show up, 8 am departure. The commute was not so arduous though, and the waiting room was empty. Apparently everyone else cancels appointments in a snowstorm, but not me - it took me ages to get a specialist visit scheduled and synced with the pediatrician and I was not going to try to wrestle with the calendar again! So, into the snowy city we went.
James is 19 lbs, 11 oz and almost 33 inches tall. This means... still barely scraping the bottom of the weight curve, but he's in the 60 percentile range for height. Beyond the numbers, we got all good news: he looks and sounds good. The nutritionist thinks he's eating fine. She even ok'd his potato chip-and-chocolate snack preferences.
The best part of the day? He fell asleep as soon as we left appointment #2, and slept solidly through lunch, allowing Peter and I to have a peaceful date at a Upper West Side restaurant we found last year. Thank you, 2014; I like what you did there.
Sunday, November 24, 2013
Growing up: development and therapy
This time last year, James was in the hospital getting his ng tube inserted in an attempt to get his appetite and his body growing. He was 5 months old and not even 10 pounds... he's come a long ways since that "failure to thrive" diagnosis. He is 19.5 pounds now, and making great progress in development, with the help of the various therapists he sees each week.
A lot of people know about his therapy but I've never really explained what it entails. I'm going to describe below why James needs therapy, what his therapists do, and how he is progressing with it.
We've been frustrated with Early Intervention as an administrative program, and have experienced a few unhelpful and unprofessional therapists along the way, but the therapists can do a lot of good and we've finally settled on a group that we like. He has three types of therapy, twice a week each: physical, speech/feeding, and occupational. That last one sounds weird, and it's tough to describe: it actually encompasses the largest range of skills that are used in everyday life. Social skills, sensory tolerances, fine motor skills and hand coordination, understanding basic concepts like cause/effect - these fall under the umbrella of occupational therapy (OT).
Why does he need therapy? There are two reasons: 1. His hospitalizations and recovery periods were essentially pauses in his development. He wasn't progressing at those times, so overall he is developmentally younger than his actual age. The therapy helps him catch up, and 2. His permanently low oxygen means he's likely to learn more slowly. Fortunately though, it doesn't look like this is slowing him down much... or at least, the extra attention in therapy sessions is counteracting it.
What do the therapists do? I'll give a little overview of what infant/toddler therapy consists of and the types of things they do to help babies learn.
His physical therapist mostly does exercises with him to work on his muscle tone. She has him sit on a bouncy ball and stretch, to develop his back muscles and sense of balance. She has him do squats (leg tone), surf on a tilting board (leg tone and balance), reach for objects (arm tone), and step over a low pole (leg tone and balance). PT was great in helping him regain strength after his last surgery, and is helping him now to work on the muscles and the skills that he needs. His body has to work a bit harder to compensate for the low oxygen, so he needs to put in some focused effort to reach developmental goals.
His speech/feeding therapist is focusing mostly on speech these days. She is great about bringing him new toys to stimulate him and see how he learns best. She is teaching him to recognize sounds, mimic facial expressions, link sounds and objects, and respond to gestures. He's doing great in general, but still working on creating sounds and gestures of his own. We're not really worried: he definitely recognizes words, even if he doesn't say them. He knows: give, ball, come, baba, in, on, and circle, just to give a few. His ST brought him Mr. Potatohead to teach him body parts, and it turns out he loves fitting the parts in the potato. She got him into puzzles by bringing a talking puzzle that said the shape name when it put in each piece. She brought him Connect Four because he loves the little parts. Lots of toys that we wouldn't have thought to get, because they are too old for him, she has found that he loves. Putting little pieces IN and taking them OUT is one of his favorite things to do. We're moving into cars and racetracks now: watching a car race down a spiral track is a new favorite.
His OT is pretty recent. We've only started this past month, and he mostly cries to be with an unfamiliar person. He's getting used to the new therapist slowly though, and she got him fingerpainting this week. Sensory exploration is something he's been very slow to embrace, but little by little he's getting more tolerant about his environment. He likes the sandbox now, likes water and puts his hand under the faucet, is more willing to touch his food, and is starting to accept getting his hands dirty. Until very recently, sensory activities like fingerpainting resulted in James sitting in his chair, immobile, hands held out in the air, unwilling to do anything until his hands were clean. So, although it sounds natural, fingerpainting was actually a big advancement for him. He struggles with wrist rotation and finger movements (necessary to fit a puzzle piece that's oriented the wrong way, or to point to something he wants). He also struggles with cause/effect actions and games. These are what we'll work on in the coming months.
We're so happy with our little man, grateful that he's doing so amazingly well, and proud of how much he can do. We're also grateful though that he has access to therapy services, because we certainly wouldn't have known to do as much as these therapists have done to get him to where he is today.
A lot of people know about his therapy but I've never really explained what it entails. I'm going to describe below why James needs therapy, what his therapists do, and how he is progressing with it.
We've been frustrated with Early Intervention as an administrative program, and have experienced a few unhelpful and unprofessional therapists along the way, but the therapists can do a lot of good and we've finally settled on a group that we like. He has three types of therapy, twice a week each: physical, speech/feeding, and occupational. That last one sounds weird, and it's tough to describe: it actually encompasses the largest range of skills that are used in everyday life. Social skills, sensory tolerances, fine motor skills and hand coordination, understanding basic concepts like cause/effect - these fall under the umbrella of occupational therapy (OT).
Why does he need therapy? There are two reasons: 1. His hospitalizations and recovery periods were essentially pauses in his development. He wasn't progressing at those times, so overall he is developmentally younger than his actual age. The therapy helps him catch up, and 2. His permanently low oxygen means he's likely to learn more slowly. Fortunately though, it doesn't look like this is slowing him down much... or at least, the extra attention in therapy sessions is counteracting it.
What do the therapists do? I'll give a little overview of what infant/toddler therapy consists of and the types of things they do to help babies learn.
His physical therapist mostly does exercises with him to work on his muscle tone. She has him sit on a bouncy ball and stretch, to develop his back muscles and sense of balance. She has him do squats (leg tone), surf on a tilting board (leg tone and balance), reach for objects (arm tone), and step over a low pole (leg tone and balance). PT was great in helping him regain strength after his last surgery, and is helping him now to work on the muscles and the skills that he needs. His body has to work a bit harder to compensate for the low oxygen, so he needs to put in some focused effort to reach developmental goals.
His speech/feeding therapist is focusing mostly on speech these days. She is great about bringing him new toys to stimulate him and see how he learns best. She is teaching him to recognize sounds, mimic facial expressions, link sounds and objects, and respond to gestures. He's doing great in general, but still working on creating sounds and gestures of his own. We're not really worried: he definitely recognizes words, even if he doesn't say them. He knows: give, ball, come, baba, in, on, and circle, just to give a few. His ST brought him Mr. Potatohead to teach him body parts, and it turns out he loves fitting the parts in the potato. She got him into puzzles by bringing a talking puzzle that said the shape name when it put in each piece. She brought him Connect Four because he loves the little parts. Lots of toys that we wouldn't have thought to get, because they are too old for him, she has found that he loves. Putting little pieces IN and taking them OUT is one of his favorite things to do. We're moving into cars and racetracks now: watching a car race down a spiral track is a new favorite.
His OT is pretty recent. We've only started this past month, and he mostly cries to be with an unfamiliar person. He's getting used to the new therapist slowly though, and she got him fingerpainting this week. Sensory exploration is something he's been very slow to embrace, but little by little he's getting more tolerant about his environment. He likes the sandbox now, likes water and puts his hand under the faucet, is more willing to touch his food, and is starting to accept getting his hands dirty. Until very recently, sensory activities like fingerpainting resulted in James sitting in his chair, immobile, hands held out in the air, unwilling to do anything until his hands were clean. So, although it sounds natural, fingerpainting was actually a big advancement for him. He struggles with wrist rotation and finger movements (necessary to fit a puzzle piece that's oriented the wrong way, or to point to something he wants). He also struggles with cause/effect actions and games. These are what we'll work on in the coming months.
We're so happy with our little man, grateful that he's doing so amazingly well, and proud of how much he can do. We're also grateful though that he has access to therapy services, because we certainly wouldn't have known to do as much as these therapists have done to get him to where he is today.
Thursday, October 31, 2013
Happy Halloween!
We've had a great few months with James - it's wonderful to be done with all the complications of last year! It's been fairly smooth sailing since the tube came out for good, and the Early Intervention therapy he gets each week is making a difference and helping him progress. He started walking in early October, holds his bottles more often, and eats a much greater range of foods and flavors.
We're still struggling with a few things, specifically weight: he is 16 months old but still hasn't passed the 19 pound mark (i.e. an average 6-9 month old size) His last weigh-in was 18 pounds, 14 ounces. His heart looks great though, his cardiologist is very pleased, and we're not worrying too much about the weight issue. We chunk him up as much as possible with extra effort to promote bigger meals, butter or heavy cream or calorie additives in his food, and returning to consulting with a nutritionist sometime soon. He is getting taller, and his height is normal for his age, so he's just an extra skinny kid. This means he has to pick between pants that reach his ankles but fall off his waist, or pants that stay up but look like capris :) He also hasn't picked up any words yet, so we're waiting for him to figure out this whole communication thing...
Here's a view of James' first Halloween costume: a minion!
We're still struggling with a few things, specifically weight: he is 16 months old but still hasn't passed the 19 pound mark (i.e. an average 6-9 month old size) His last weigh-in was 18 pounds, 14 ounces. His heart looks great though, his cardiologist is very pleased, and we're not worrying too much about the weight issue. We chunk him up as much as possible with extra effort to promote bigger meals, butter or heavy cream or calorie additives in his food, and returning to consulting with a nutritionist sometime soon. He is getting taller, and his height is normal for his age, so he's just an extra skinny kid. This means he has to pick between pants that reach his ankles but fall off his waist, or pants that stay up but look like capris :) He also hasn't picked up any words yet, so we're waiting for him to figure out this whole communication thing...
Here's a view of James' first Halloween costume: a minion!
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