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.

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!

Summer in Rochester

July flew by far too quickly, but it was a wonderful month. We spent the majority of it in Rochester, visiting family and missing all but a few days of the month's most intense heat. So many great things happened in Rochester, it's hard to even know where to begin! James gained almost an entire pound, and was weighed at 18 lbs 5 oz when we returned home. He grew and learned so much with the help of so many relatives around :)

- tolerating more solids, including his first pasta (little pastina stars) as befits an Italian kid.
- racing around on all fours at breakneck speed
- flying both up, and now also down, the stairs
- making a range of new noises, mostly in the form of blowing raspberries
- smiling at and allowing himself to be held by everyone
- playing with his new kitchenette while standing
- opening and closing and opening and closing cabinet doors
- swimming in his baby pool and (more or less tolerating) the big pool too
- discovered a love of chocolate custard

Thanks to our family for a great time, and a lot of babysitting help, and teaching our boy to be sociable!

Peter and I enjoyed our days and evenings out, and feel rejuvenated by the time spent on our own. James already misses Grandma's, and has expressed his displeasure in our lack of cabinet doors and carpeted stairs in the Bronx. He started standing all on his own in the past few days - we knew he was close!

A few pictures from our summer adventures:

chocolate custard and beach time

family outings: waterfalls and sculpture garden...

...and pooltime fun with uncle George

watermelon and duck watching by the canal

One year old!

We celebrated James' one-year mark with a picnic in the park. Some fun videos were taken but have yet to be downloaded and compiled :) Maybe we'll get to that soon... We had lovely sunny weather and sat out in the shade in Riverside Park.

We picked a spot next to the River Run playground, which has water features and a sandbox that are appropriate for a 1-year old who can't walk yet. We thought James would have fun splashing in the baby river and making a mess in the sand.  Instead, he was terrified and wouldn't touch either! He also didn't care for the chocolate cake we made him, but he did stuff himself with potato chip fragments and have a blast batting around balloons.

He's 17 lbs 7 oz - almost no weight gain lately :( But he's doing great in every other way. He stands up pretty constantly while holding onto furniture, and is starting to cruise around tentatively. He loves climbing and has managed to climb onto our rocking chair without aid. He drums on every solid surface he can find (except, of course, his toy drum, which he totally ignores). He has a preference for circles, balls, and wheels. He spins the wheels on his toy trucks and thinks it's the best thing ever.

From January (L) to July (R): 

 Birthday pictures:

A few more just for fun: 

entertainment via bottle spinning, and mohawk hair

This funny kid

New photos:

He's quite mobile these days, crawling and scooting all over the place... I can't always keep up and grab a camera quick enough for the funny moments. Here are a few I did catch:

classic McMahon face

making friends

post-bath hair

somehow asleep despite the contortions

Problem-solving by James

There's juice in the sippy cup, but how does one get it out? James gives it a try:

Chugging on

It's been awhile since our last post. We've started to wonder where to go with this blog... with the surgeries out of the way (at least for a few years), there is not as much to update as frequently. We'll keep up regular articles about our family as a whole, and photos of James as he grows. However, until we figure out a direction to take with this blog, our posts will be a bit more spaced apart and a bit light on content.

James is 16 lbs, 6 oz as of last week - which means he gained ZERO weight in the past month. Not so great. However, his GI doctor is content to keep him off the tube, since he is so close to eating enough, and push him to develop his eating skills and strength further. We'll help him out by giving him mostly formula, which has more nutrients and calories than most solids and burns fewer calories to consume. His solids will be focused on high fat, high protein, high calorie foods, with butter and oil added in for good measure. So far, we've identified avocado, yogurt, and mac and cheese as good diet options. I'm at a loss though as to what else to feed him... any ideas would be welcome!

He's almost crawling, and loves to scoot backwards. Sometimes this gets him into a bind. He's also warming up to books as something fun to look through instead of merely munch on. He loves trains, and the subway is only a half block away (and above ground) so entertainment is never far. Photos of our growing sweetheart below :)

Back on the charts

A bit of good news this rainy Friday: our doctor visit this morning weighed James in at 16 lbs, 6 oz - which places him officially on the growth curve. He's in the smallest 3%, but he's on the charts at last! At 28 inches, he has officially grown out of his car seat. Time for more shopping...

He's also back on the tube, mostly because the flu kept him from eating his usual amount so we had to keep him hydrated via the feeding pump. The fact that he was off the tube until just this week, and still gained weight, is a great sign. It's very possible we'll be packing the tube away for good soon :) Today was our first visit to Weill-Cornell in 7 weeks, and it actually looked different. (It's amazing how cool renovations appear when you compare 2-month intervals instead of weekly ones.)

We are all excited about the arrival of spring, the increasing independence from the tube, and a much lighter doctor schedule. We have the time and flexibility to get out more, accomplish more, and look forward to new endeavors in coming months!

Spring progress!

Happy Easter! We spent the holiday recovering from a nasty bout of the flu, so it hasn't been very celebratory around here. Rest and relaxation are much appreciated though.

We have actual progress to report on this time: James is off the tube! It's still only provisional, but he's been off for over a week now and he's eating well. He's not meeting his goal (800 ml), but he's obtaining the daily minimum (600 ml) - and day by day he's slowly improving. We change the tube each week for sanitary purposes, and the last time we were all just too fed up with the tube to muster up reinsertion energy. A few days of break did him good though, and his eating skills took off. James has had such "testing" off-tube days before and not done so great, but this time he was ready to show us what he can do.

It is SO nice to not deal with the tube feeding process every day. With the tube out, he no longer needs to keep his hands gloved, so he can play more freely. He doesn't throw up, at all, ever. He's starting to sleep more soundly at night. He's also picking up on solids: yogurt, mashed banana, crackers, soft puffy chips that dissolve in his mouth. He still resists swallowing anything more solid than yogurt, but his Early Intervention therapy has begun so we'll be working on his swallowing with the help of a feeding specialist.

In honor of tube independence, I'm posting a few photos of little J without any medical paraphanelia blocking his face :)

Spring weather and fun fluff

This is a fun post; nothing newsworthy from our end. The camera cord is recovered though so we have some pics of James's recent growth and adventures.

We had our first zoo outing today. I'm not incredibly impressed with the Bronx Zoo, especially since they have no elephants! (?) and the lions and gorillas were not in their exhibits. The giraffes were, and we got impressively close, but only because their enclosure was approximately as small as my apartment. Still, it was a nice day for an outing and I enjoyed seeing the animals. James kind of missed the point. I'm not sure he realized the tigers relaxing on the other side of the glass weren't on tv.

We have a nice playground about a block away, and the 3 of us went together last Sunday to enjoy some sunshine. It was incredibly busy, and James seemed to like just seeing and being around other happy kids. He loves going down the slide, although this playground only had a spiral one and I don't fit too well...

who's here to see who?

 

Routine and repetition

I've delayed posting for awhile, because I've misplaced my camera cord so I can't download photos for the time being. James has some adorable rolls of fat on his legs now, and is really looking his age. He's still below the growth curve (meaning the average weight of the smallest 3% of kids his age is still higher than where he is now) but he's catching up.

However, he's not catching up in other areas. Feeding is still a major issue, and we've met with a series of Early Intervention evaluators in hopes of getting him feeding therapy. He has developed behaviors that they label as "oral aversion". We've known this for awhile, but the label is nice to hear because it means that finally someone is taking this seriously. Solid foods are not enticing him... he's curious enough to swallow a few bites of food with a yogurt-like consistency, but not interested enough to go beyond the initial taste test. Anything more solid gets promptly spit back onto his bib.

I won't even get into how annoyed I am with Early Intervention, except to say that the program is disappointing with its limitations. Feeding is a recognized developmental delay, but NYC doesn't consider it important enough to address on its own. They won't let a child who can't eat on his own get feeding therapy unless he also has another developmental delay. Furthermore, their own evaluators decide whether a child qualifies - even though a pediatrician must recommend the child for specific services in the first place. Thus, EI depends on the arbitrary decision of a non-professional evaluator who is not familiar with the child's medical history, and ultimately ignores the child's doctor's input. This is how our government dollars are allocated...spent paying evaluator after evaluator after evaluator to reexamine an already diagnosed child before any of those dollars go towards actually doing something for that child.

Fortunately for us, James has been judged as a qualifying candidate. Ultimately, though, no one will do much to teach him the skills he missed and un-teach the negative behaviors he acquired through these past months of medical marathons. So above all, we're lucky that I can stay home and work with him throughout the day. It's frustrating to deal with, since I feel like I really do dedicate hours a day to feeding him. Not only does he take a long time to eat, but the series of exercises we go through to keep him developing his skills and tastes adds on to each meal. We spoon feed him one or two solids first, to expose him to flavors and hopefully help him slowly develop his oral and social skills. Then we bottle feed. We migrate from chair to arms to crib as we try to coax him into relaxing and eating... we trick him into taking his meds... we do facial massages to stimulate his swallowing... we try music and videos and bouncing to relax him if he's too wound up to focus... Finally, once the options have been exhausted, we connect him to the pump and finish his meal via ng tube. To wrap up: dishes to wash include 1 bottle, 2 spoons, 2 bowls, 1 ng bag, 2 syringes; and the table and floor are covered with food. Clean, sit back, do some physical exercises with James, and then get ready because he's getting hungry again.

I get pretty worn down by the monotony of my days, because although I love him, much of our time is spent with the above routines. He makes up for it though when he cuddles close... :)

2 weeks home and celebrating

It's February break for the public schools, which means no work for Peter and some quality family time for the 3 of us! James is doing great, and has been very busy. A few days after post-op discharge, we saw his pediatrician and dosed him up with a slew of vaccines. The following week, a home nurse service came by to check on him. Then Early Intervention, recommended by his docs as a given for any child with a severe heart defect, kicked in and set up a few meetings to get him enrolled and evaluated. Finally, we met back with his cardiologist for a 2-week followup.

Results? He looks WONDERFUL. Almost 14 pounds... probably not even going to qualify for Early Intervention because he is sitting and rolling and practically standing already all on his own... possibly soon to be off the feeding tube too. He has finally figured out he can eat on his own, and is managing to take a solid 80% of his meals by mouth, if not more (achieved courtesy of a fair amount of time and effort on our end, of course).

A few pics of our adorable guy... healing so well, cuddling his teddy from Aunt Cookie, enjoying his toys and books and everything about being home, & graduating to solid foods :)