Better late than never right? I've finally uploaded the x-ray "animated" video of LJ's swallow study back in May. I understand some of you might be WEIRDED out by the footage so click on the below link as you wish. A speech pathologist from St Joe's gave LJ some barium-infused sweet potatoes so that the contrast on the x-ray would show how well organized (or disorganized) his swallow was and whether he could protect his airway. We were nervous going into it because he had a barium swallow study done before that in September 2009 and he failed...so we had to stop feeding therapies because of risk for aspiration. But this time he PASSED it with flying colors, on both the thin and thick purees, and it was the reassurance we needed. There's still some thought that some purees may be making it up LJ's nose but we didn't see any hiding out in the below video.
St Joe's Bootcamp Day 20-Barium Swallow Study Video
It is so cool that technology like this exists. The knowledge it affords people with dysphagia and other swallowing difficulties is tremendous. Here's a link that explains the swallow study more fully.
Tuesday, August 31, 2010
Monday, August 30, 2010
today is awesome!
Well done, LJ! We are still figuring out our feeding team's plan of action, but one professional that has been a constant support to us has been our OT, Jeni. She has been working with us on oral desensitization since the day she came to us last March 2010 through Early Intervention. She has been a godsend to us and is the one responsible for putting us in touch with the mommy I referred to in a previous post, Jenny. She is the one who has kept on at it even when we've been so discouraged in months past. She is like the mother bird, feeding me worms, pushing the feeding therapy and in the initial months when LJ came home from the NICU, helping to devise a sleep plan that might help on so many other fronts to calm down LJ's nervous system. And today, she and LJ connected on higher levels yet again. It was huge...LJ was bringing the cup to his mouth....he wanted to feed himself the pretend food. And afterward, he even wanted to pretend to take a nap- with a kitchen towel as his lovie. Lots of pretend play goin on around here. We are on the right road!
Friday, August 27, 2010
A Year Later, Still Tube Feeding....
LJ still hasn't progressed with his oral intake. His food aversion is still definitely alive and kicking. But, he at least shows interest in food and by that I mean he tolerates food, he just refuses to swallow it. We've been talking to some new doctors about whether LJ is a candidate for a tube weaning program and we have a second opinion with a GI doctor about our options regarding his Mic-Key button. This other doctor supposedly works with a nutritionist who is much more compassionate about their approach to finding the right recipe of calories from tube feedings and calories from pureed table foods fed (this would add bulk and also really help on the severe reflux-front) via syringe into the tube. The ultimate equation would actually be a recipe for calorie reduction so that Noodles can actually experience hunger and getting us closer to having his Gtube removed.
For those of you that don't know, LJ's button has been leaking every time he has a bolus feeding and causes great discomfort when the stomach acids touch his skin.
Our GI doctor thinks the hole is too big, and since he's in the correct size Mic-Key button he should be admitted to the hospital so they can take out the Mic-Key button and watch the hole close up- putting a button back in at the very last possible second. That makes me way too nervous. If it doesn't work, he'd have to have another surgery and get a G-J Tube. G-J Tubes are aptly named because there are two separate routes included inside the feeding tube. One route is delivered into the stomach (gastrostomy) and one goes directly to the small intestines (jejunum). This entails that all feedings be done on a 24 continuous (much slower speed than what we currently experience) basis though since you can't overload the small intestines without a complete catastrophe. We're so NOT interested in taking backward steps; we hope LJ can become an eater, so you can assume why we are seeking another opinion.
We have been grateful for the dialogue with Dr. Markus Wilken in Germany and fellow blogland friend, Jenny, in Seattle who's beautiful, little boy Heath has officially become an eater. Markus says that the earlier a child can control his own needs, the better the self-regulation in many other areas as well. The first step to helping prepare your child for a tube wean is making sure your child is not afraid of food. He also says "on the other side, an interest in food, eating, being fed is always a good sign your child is ready though not in all cases an inclusion criteria." There are lots more influencing factors. Unfortunately we just missed Markus' visit to Seattle two weeks ago, so we are trying to "virtually" work with him and finding new members for our local team to better understand (affirm) LJ's aversion. Jenny gave me such wonderful words of wisdom, "All we can do is respect that battle and create the conditions for him to make his choice by allowing him to be genuinely hungry, and supporting what comes as a result of hunger." I think as tough as this is for Josh an I, it's got to be 100 times tougher for LJ.
Here's a journal of one of our food playtimes: we tried 5 different types of food- applesauce, pureed carrots, diced avocado, french fries and apple rings. LJ still would much rather feed others than be fed himself. There's also some video of him playing with his iPad and pretend food. He prefers the latter!
Play With Your Food, LJ from Jenn S on Vimeo.
Our GI doctor thinks the hole is too big, and since he's in the correct size Mic-Key button he should be admitted to the hospital so they can take out the Mic-Key button and watch the hole close up- putting a button back in at the very last possible second. That makes me way too nervous. If it doesn't work, he'd have to have another surgery and get a G-J Tube. G-J Tubes are aptly named because there are two separate routes included inside the feeding tube. One route is delivered into the stomach (gastrostomy) and one goes directly to the small intestines (jejunum). This entails that all feedings be done on a 24 continuous (much slower speed than what we currently experience) basis though since you can't overload the small intestines without a complete catastrophe. We're so NOT interested in taking backward steps; we hope LJ can become an eater, so you can assume why we are seeking another opinion.
We have been grateful for the dialogue with Dr. Markus Wilken in Germany and fellow blogland friend, Jenny, in Seattle who's beautiful, little boy Heath has officially become an eater. Markus says that the earlier a child can control his own needs, the better the self-regulation in many other areas as well. The first step to helping prepare your child for a tube wean is making sure your child is not afraid of food. He also says "on the other side, an interest in food, eating, being fed is always a good sign your child is ready though not in all cases an inclusion criteria." There are lots more influencing factors. Unfortunately we just missed Markus' visit to Seattle two weeks ago, so we are trying to "virtually" work with him and finding new members for our local team to better understand (affirm) LJ's aversion. Jenny gave me such wonderful words of wisdom, "All we can do is respect that battle and create the conditions for him to make his choice by allowing him to be genuinely hungry, and supporting what comes as a result of hunger." I think as tough as this is for Josh an I, it's got to be 100 times tougher for LJ.
Here's a journal of one of our food playtimes: we tried 5 different types of food- applesauce, pureed carrots, diced avocado, french fries and apple rings. LJ still would much rather feed others than be fed himself. There's also some video of him playing with his iPad and pretend food. He prefers the latter!
Play With Your Food, LJ from Jenn S on Vimeo.
LJ Using iPad to Choose Play Food from Jenn S on Vimeo.
Wednesday, August 25, 2010
Blissed Out
cool nights :: group dinners :: Ithaca Beer Company :: boat rides :: great conversations :: farmer's market :: Wings of Life Salad (a pile of fresh baby greens, three kinds of cheeses, two of olives, shocked broccoli, brown rice, chickpeas, spicy tofu cubes, cashews, almonds, and sunflower seeds, a hunk of bread, and lemon-sesame dressing) :: bonfires :: stargazing :: s'mores :: Finger Lakes wine :: Ithaca Bakery (the Lindsey sandwich and the Octopus are still my faves) :: tractor rides :: sailing :: sunshine :: smiles :: guy's golf outing :: friends :: skipping rocks :: looking for washed up glass :: the Piggery :: Nate quotes such as " I love me some cake!" :: exploring in the creek :: quiet time :: puzzle mania
Saturday, August 21, 2010
Wednesday, August 18, 2010
Our Happy Place.....Ithaca
I was feeling not so great about our demanding schedule/stress levels all last week, nothing could hold me up. I'm at peace now, and I woke up this morning feeling great (it also helps that LJ is such a tough cookie and Nate is/will always be my baby). We are going to visit our friends, the Browns and the Wittinks at Cayuga Lake! We had a stay-cation at the beginning of the week- I worked on customizing P2Go for LJ's iPad, we cleaned out our office files and then we did an E-Feed video conference with the folks at St Joe's in Paterson, NJ before traveling. More on that later. Hope you have a wonderful week wherever you may be.
Saturday, August 7, 2010
LJ and the Impressive Fracture
Happy Saturday. LJ is presently tearing around the house in his walker, terrorizing his cousins and brother. He's got a big grin on his mug. You'd never guess he has a fractured skull...
When last we saw our fearless hero, the X-rays were clean. That was Monday. On Thursday afternoon, we got a call from the Doc's office - the radiologists' report found some abnormalities. Please go have a CT scan right away, just as a precaution. LJ and Jenn ran off to the CT scan place and got that taken care of, straight from the swimming pool. Then back to the Doc for a preliminary read of the scan. Doc sent us to the ER at Children's hospital, since that's where they had a pediatric neurosurgeon on duty. Gulp.
I met Jenn and LJ at the hospital straight from work. I was supposed to be headed to the airport to pick up my niece, nephews and sister in law, coming in from FL. Luckily (for us, if not for them) their flight was delayed, so I was able to be in two places at once. LJ was in a great mood - he was very responsive and smiley while we waited. At this point, it had been more than a week since he banged his head, and he'd really been back to himself since shortly after it happened.
Truth be told, the three of us had a pretty good time hanging out in the exam room at Childrens. We were very concerned, but LJ calmed our fears by being very cuddly and curious. He practiced his baby signs with Jenn, played peek-a-boo and waved at every nurse and doctor that came by.
The Neurosurgeon said it was an "impressive fracture", starting just behind LJ's right ear and extending several inches. He even took the images to show his boss. (Apparently, a skull fracture can be "impressive" without being very serious, for a two year old. So that's good). Neurosurgeon checked LJ out and gave us the all clear around 8:30. The course of treatment for a minor skull fracture is to do nothing and let it heal, come back and see us in a month. By the time Jenn and LJ actually got to leave it was nearly 10 and I was out at the airport picking up the cousins.
I'm not sure what the moral of this story is, but we're all glad it ended well. It ended up being much ado about nothing, since there's no specific treatment other than time, but at least all of our questions are answered. Time to go have a fun weekend with the family.
When last we saw our fearless hero, the X-rays were clean. That was Monday. On Thursday afternoon, we got a call from the Doc's office - the radiologists' report found some abnormalities. Please go have a CT scan right away, just as a precaution. LJ and Jenn ran off to the CT scan place and got that taken care of, straight from the swimming pool. Then back to the Doc for a preliminary read of the scan. Doc sent us to the ER at Children's hospital, since that's where they had a pediatric neurosurgeon on duty. Gulp.
I met Jenn and LJ at the hospital straight from work. I was supposed to be headed to the airport to pick up my niece, nephews and sister in law, coming in from FL. Luckily (for us, if not for them) their flight was delayed, so I was able to be in two places at once. LJ was in a great mood - he was very responsive and smiley while we waited. At this point, it had been more than a week since he banged his head, and he'd really been back to himself since shortly after it happened.
Truth be told, the three of us had a pretty good time hanging out in the exam room at Childrens. We were very concerned, but LJ calmed our fears by being very cuddly and curious. He practiced his baby signs with Jenn, played peek-a-boo and waved at every nurse and doctor that came by.
The Neurosurgeon said it was an "impressive fracture", starting just behind LJ's right ear and extending several inches. He even took the images to show his boss. (Apparently, a skull fracture can be "impressive" without being very serious, for a two year old. So that's good). Neurosurgeon checked LJ out and gave us the all clear around 8:30. The course of treatment for a minor skull fracture is to do nothing and let it heal, come back and see us in a month. By the time Jenn and LJ actually got to leave it was nearly 10 and I was out at the airport picking up the cousins.
I'm not sure what the moral of this story is, but we're all glad it ended well. It ended up being much ado about nothing, since there's no specific treatment other than time, but at least all of our questions are answered. Time to go have a fun weekend with the family.
Wednesday, August 4, 2010
Week Summary
So we have had a crazy week and it's not even over yet! First, LJ pulled some heavy, dining room furniture down onto his head. I know this is typical toddler, exploratory behavior but nonetheless alarming when we couldn't get him to sleep at all that night. Of course, it had to happen when Nate and I were out on a playdate, and I got that lovely call from the caregiver (The whole car-ride home Nate kept forgetting what that word 'lump' was...there's nothing like having an almost 5 year old around to lighten the air a bit) . He wound up with a large hematoma in the temporal region of his head. Even though we waited several days closely observing him, I was sick with worry, administering acetaminophen, lots of cuddles and finally ended up taking him in for some x-rays to rule out fracture or any other serious brain injury. We are relieved to report they came out all clean.
We've been busy with our CSA farm share too. We canned a bunch of bread + butter pickles as well as some cornichon pickles. I also baked this Peach-Raspberry Crisp from the Barefoot Contessa. The tomatoes have been abundant and we've eaten them every which way!
Nate has even enjoyed some of the creations- surprisingly, one of which was Quinoa with Sauteed Summer Veggies. Nate also had art camp where he whipped up some of these diddies:)
The other really big news? We broke down and bought Noodles the iPad with Proloquo2go (P2Go).
Here's what a screen looks like versus what our big, clunky talker looks like.
We haven't set everything up yet but I am so excited for the possibilities. It is light years ahead of what the 4-way communication device was capable of doing. The touch screen is a lot easier for Noodles to engage and I don't have to re-record all the vocabulary words anymore. Our speech therapists have both been learning about P2Go and they have both said how awesome this is going to be for kids in their school environment as well as their overall independence.
We haven't succeeded too much on the feeding front. We are still only consuming 1 ounce at a meal and the obstinate side of LJ comes out each and every time its mealtime. He tries to game the system by holding the food in his mouth until the positive reward is given, and then he immediately spits the food out. One of the new techniques we have adapted is counting to ten slowly after he has received a spoonful. If he still hasn't swallowed he has to wait for the reward while we hold his jaw shut. It's not pleasant but I think we are slowly getting there.
Hungry Hippos has been going well though. LJ pretended to stir a drink with a pretzel rod and then he brought it up to his mouth on his own initiative. He also imitated us playing with straws and he tried putting them in his mouth too. We played with a pizza box and made pretend toppings. Then LJ did something that shocked us even more. He pulled boxes of food out of some drawers and he did the baby sign for "help me". He wanted us to help him get the bag of ginger snap cookies out of the box! I think he enjoyed hearing the crinkling sound of the cellophane bag more than he was interested in the actual cookies. Nonetheless, he did try to feed me the cookies which I would never turn down!
Noodles rocked his Aqua Therapy this week. It was so nice to see him enjoying the therapy again. He successfully made some baskets at the water hoop. He also loosened up a lot throughout the session- his muscles were extremely tight at the beginning of the session and progressively got looser as we warmed up. The other thing our PT worked on was getting him to tilt his hips. She used a game of water splashing to entice him to bring his legs up and in, then kick straight out. So this week was the most interested he has ever been in food play and happiest he has been in the pool in a long time, hematoma and all. Go figure.
We've been busy with our CSA farm share too. We canned a bunch of bread + butter pickles as well as some cornichon pickles. I also baked this Peach-Raspberry Crisp from the Barefoot Contessa. The tomatoes have been abundant and we've eaten them every which way!
Nate has even enjoyed some of the creations- surprisingly, one of which was Quinoa with Sauteed Summer Veggies. Nate also had art camp where he whipped up some of these diddies:)
The other really big news? We broke down and bought Noodles the iPad with Proloquo2go (P2Go).
Here's what a screen looks like versus what our big, clunky talker looks like.
We haven't set everything up yet but I am so excited for the possibilities. It is light years ahead of what the 4-way communication device was capable of doing. The touch screen is a lot easier for Noodles to engage and I don't have to re-record all the vocabulary words anymore. Our speech therapists have both been learning about P2Go and they have both said how awesome this is going to be for kids in their school environment as well as their overall independence.
We haven't succeeded too much on the feeding front. We are still only consuming 1 ounce at a meal and the obstinate side of LJ comes out each and every time its mealtime. He tries to game the system by holding the food in his mouth until the positive reward is given, and then he immediately spits the food out. One of the new techniques we have adapted is counting to ten slowly after he has received a spoonful. If he still hasn't swallowed he has to wait for the reward while we hold his jaw shut. It's not pleasant but I think we are slowly getting there.
Hungry Hippos has been going well though. LJ pretended to stir a drink with a pretzel rod and then he brought it up to his mouth on his own initiative. He also imitated us playing with straws and he tried putting them in his mouth too. We played with a pizza box and made pretend toppings. Then LJ did something that shocked us even more. He pulled boxes of food out of some drawers and he did the baby sign for "help me". He wanted us to help him get the bag of ginger snap cookies out of the box! I think he enjoyed hearing the crinkling sound of the cellophane bag more than he was interested in the actual cookies. Nonetheless, he did try to feed me the cookies which I would never turn down!
Noodles rocked his Aqua Therapy this week. It was so nice to see him enjoying the therapy again. He successfully made some baskets at the water hoop. He also loosened up a lot throughout the session- his muscles were extremely tight at the beginning of the session and progressively got looser as we warmed up. The other thing our PT worked on was getting him to tilt his hips. She used a game of water splashing to entice him to bring his legs up and in, then kick straight out. So this week was the most interested he has ever been in food play and happiest he has been in the pool in a long time, hematoma and all. Go figure.
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