Jan 24, 2013

Feeding Session & Oral Eating Status

As I've said many times before it's a fine line between accepting your medically intense special needs child for who they are and helping them get the most they can out of life. What makes it hardest is the doubt. Until they've done something you can't be sure they CAN. That makes it hard to know how much energy to put into building skills.

Eating is something so fundamental for human life. Those of us who are able bodied can't understand how someone could not be able to eat. For us it is easy and a pleasure. We can't even imagine life without eating. But it is not that way for a lot of kids who've had medical issues.

The procedures, testing and surgeries they've been put through in their early years often cause them to develop an oral aversion.  If  they are lucky enough not to have an aversion or move past it, there is them the simple fact that tube fed children don't have to eat and they know it.  This can actually be the biggest problem of all. When a child is tube fed from infancy they don't learn the skills required for eating so they physically can't to it until they build the required skills. Eating is often hard work for these kids.

Babies spend a huge amount of time sucking milk in their first year. Their cheeks and tongue get strong and coordinated during those early months and prepare them for the next steps in eating. When a child misses out on normal experiences it sets their development back and it can be difficult to catch up.

In addition children with trachs commonly have difficult swallowing. I believe there are several reasons for this.
  • Decrease sense of taste. You know how food lacks taste when you have a cold? That's because your sense of smell is diminished. People who breathe through a trach don't have normal airflow through the nose. Wearing a speaking valve or trach cap during eating can help when a child can tolerate one.
  • Feeling - The cannula (tube) in the trachea. It's got to feel weird to have a tube moving around in your airway when you swallow. Some people think it causes a delay in swallowing like when you have a sore throat and it takes effort to swallow.
  • Weakness. A very high percentage of kids trached since infancy are tube fed because of the above reasons. When you tube feed the muscles used for eating don't get used. And eating uses a lot more muscles than you would think, especially food that must be chewed. I think this is why when we are sick we enjoy soups and foods that are easy to eat. Food that requires a lot of chewing takes a lot more effort to eat. When you are weak, that isn't enjoyable. 
There are kids with trachs who eat, but often they are the kids with no neurological issues or kids that were trached after they'd already learned to eat.  I've come to realize after years of trying to get Ainsley to eat that the more issues a child has the harder it is to overcome them. Perhaps an obvious fact and yet sometimes the things that are most obvious are hardest to see.

The amount of energy I've put into trying to get Ainsley to eat orally.....well unless you've been through it you just can't imagine. Whatever you think, multiply it times 10. To an outsider it probably seems crazy. Hindsight being 20/20 maybe it is. If I knew it would be so many hours invested with so little success maybe I'd have never tried. I certainly have enough "on my plate". So much that when I look at it sometimes it makes me want to vomit because it's piled so high you can barely see the plate. And yet...Ainsley could swallow and so I believed that she could do it. I still think she can. But I've learned that there will be no shortcut on this path.  It will take hundreds more hours to get there and no one can give me directions because the terrain keeps changing.

I've learned that the best way to make progress is slow and steady and to adapt along the way. It is easy to see encouraging signs and want to push harder for quicker progress. Usually that backfires. The best motivator to get a child eating, is for them to ENJOY IT. That means backing off a little, sometimes a lot. We don't have to beg and plead for our typical children to eat food they like and if we do then they instinctively know they shouldn't want to eat it. We never beg and plead for them to eat their ice cream, cookies, mac 'n cheese or other tasty foods. The more we push the more unappealing the food will be and the more stubbornly they will resist. Did you ever sit at the table all day to avoid eating some horrible food when you were a kid? I did. Most of us have and remember how awful it is. There is a story called Everything Is A Grasshopper that illustrates this perfectly.

After I read this article years ago I took a more relaxed approach with Ainsley which I found to be more successful and easier. Before this I had been frustrated to the point of tears (on both our parts) on a nearly daily basis but I didn't listen to what the the frustration was trying to tell me, which was that it wasn't working. That's not to say I don't still struggle sometimes. I want Ainsley to eat orally so sometimes I slip up and push harder than I should.

Since eating is complex there are a lot of things we have to work on to make it happen for her. Currently this is what we are doing:

  • Increase jaw, lip and tongue strength with oral motor therapy.
  • Timing - Thin liquids are the hardest because they move fast. But Ainsley takes a few swallows multiple times a day. She determines the quantity to make sure she doesn't aspirate. My theory is she won't learn if she doesn't practice. Luckily we don't see signs of aspiration.
  • Hunger Connection - I try to always have her taste some of the food (whether it's canned formula, blenderized formula or pureed food) with each tube feeding so she connects feelings of hunger and satiety with the act of oral feeding and tube feeding.
  • Peer Modeling - We provide a snack at school so she can "eat" with her peers which can be motivating.
  • Tolerating Mixed Textures - This is the next step required before eating table food. We send applesauce and crackers so she can eat a mixed texture at lunch before she is tube fed. When the big kids are doing homework I try to do the oral motor therapy and provide another mixed texture snack.
  • Table Foods - Ainsley gets table foods during dinner. She will chew and swallow a couple bites when she wants to. She really enjoys dinner a lot. I don't do therapy during dinner because we need the family time plus it allows Ainsley the freedom to explore without pressure.
  • Endurance and Strength - Ainsley fatigues so we are trying to increase the quantities of purees she can swallow by offering a pureed meal after dinner.  I let her eat as much as she can, time permitting, doing the spooning herself (self-feeding is another skill that requires practice). When she tires I spoon feed the rest and then tube feed what she doesn't eat orally. I don't have the energy or time to do this every day.
  • Talking About Food- We are using Ainsley's communication device to talk about the food and assist with our feeding sessions and therapy. Hopefully this will lead her to be able to communicate more with us about her eating so she can tell us more about her likes and dislikes and what problems she is having, which will hopefully contribute to success. Plus it helps develop AAC skills.
I have a video to share of a post dinner feeding session so you can an after dinner "feeding session". I'll post more about her Nova Chat 7 AAC in the near future. I'll also try to get more video of her "eating".



If you'd have asked me 5 years ago, I'd have never believed it would take us this long to get this far. The one missing component is hunger. I believe at some point we will have to reduce her tube feedings to increase her oral intake but that is complex. Because of the nurses who care for her we will need orders from a doctor which probably means passing a VSS. At this point I'm not sure Ainsley has the stamina to eat all her calories even if she can pass a VSS (she never has) and I'm reluctant to set us up for failure.

We are inching our way toward the milestone of fully oral feeding. I have hope Ainsley will get there in her own time.

Jan 21, 2013

Look Who's Diaper Free!

Well, not quite, but nearly. Hopefully.

I was counting it up recently and since my 3 kids are about 3 years apart in age, and Ainsley has spent an extended time in diapers, I have been diapering for nearly 12 years. I don't think there has been a time that I could leave the house without some sort of diapering supplies, in all that time.

12 YEARS!
That is a LONG time. There are a bunch of things that are hard about having a medically intense special needs child. One is when you realize that you could very well be changing diapers for the rest of your life.  Especially when the diapers become adult sized, and your child grows...eh-hem...hair. Yes. I know. It's a shocking realization. Of course there are special needs kids who are probably able to toilet train without issue. But what do you do when: 
  • Your child can't walk to the toilet or even stand without help.
  • Can't pull their pants up and down.
  • Can't wipe.
  • Can't even tell you when they need to go.
My assumption was that we'd be in diapers. Forever. But then I learned from other parents on the Tracheostomy.com Support Forum that some parents were choosing to put their child on a toileting schedule, even children with extreme physical limitations.

Being more of a creative type, I'm not so good with managing time. It has a way of getting away from me and all my friends know that I've never been good with schedules. The idea of being tied to a timer for the rest of my life was just about as appealing as the prospect of adult diapers. And that is saying something! And yet, I couldn't help but wonder, what if Ainsley COULD do it. And we didn't ever try? I am the person who is forever wondering WHAT IF.

She has been wearing pull-up style diapers for a few years (GoodNites actually, for size), during the day. We would take her to the toilet when she asked (by signing potty) which was infrequently. Over the past year or so any time we've tried having her wear underwear at home she would be okay for part of the day but would inevitably have an accident. But lately, she was staying dry most schooldays while the nurses took her on a schedule. She was also often dry when she woke up in the morning. In November I came up with a plan and warned the nurses that in January we would make the switch to underwear.  Trying is the only way to answer the WHAT IF.

I could tell the nurses were a bit nervous, knowing that if they didn't get her to the toilet she'd be wet and require a change of clothes. I was hopeful that we could get away without plastic pants (which are nearly impossible to find in bigger sizes unless you order from an adult incontinence store), which I knew she would hate anyway. Times that we tried underwear at home and she peed she hated being wet and would crawl over to me and sign potty so we would change her. I knew that she needed to FEEL WET in order to get to the next level.

In the mean time, during December, I prepared the nurses and school for this transition by telling the my plans and asking them to act as if she was in underwear and try their hardest to avoid letting her wetting her pull-up. I also explained the plan to Ainsley and reminded her during that month that soon she would be wearing underwear. I think that month of "pretend" helped prepare everyone.

Last MONDAY we sent her to school for the FIRST day in her Hanna Training Unders. They have well padded center layer that is quite absorbent (helpful so the child feels more uncomfortable when wet building in a natural consequence and also better at controlling the mess). Luckily she has a skinny bum since they stop at size 4 and she is a solid size 6X-7. I love seeing her crawling around the house free from diapers, I imagine she must be so much more comfortable.

My friend Katie from the trach forum sent us a button device that can record a message. I recorded "I need to use the potty." on it and hung it from a cute necklace so she can wear it at school and push the button if she needs to use the toilet in between scheduled visits. It's working pretty well, and the nurses report she sometimes does push the button to tell them that she needs to go. Thankfully she doesn't push it all the time for fun. While Ainsley has an iPad communication device at school it is not with her every moment of the day, so the necklace is a handy way to be sure that she is "heard". She will use the sign for potty, but of course few people know sign language and a person has to be watching to see. For less mobile children in certain environments it can be difficult to get an adult's attention.

You can buy these devices here, and they also sell a clip style. Any simple recorder might work just as well. I simply threaded the ring carefully around the elastic of the necklace.

For now I am a slave to the timer. But I am hopeful that this is just a step toward potty independence.

For now we are trying to keep her dry, so the timer is set for 1 1/4 hour. We found through trial and error that every 2 hours wasn't often enough at home. Eventually we'll increase the amount of time and hopefully get to a point when we can lose the timer. Sometimes we find that she will pee just a little, and then come find us, sign potty, and then she'll pee more in the toilet. It's encouraging that she has some control.

She has also started to poop in the toilet. Hooray!!! It's been a long process. Even though I would do the "potty dance" every time she pooped in the toilet, and she thinks it's hilarious and loves it, she still preferred to hide and use her diaper. Recently I tried really hard to pay more attention and catch her when she needed to go. After a month or so of more successes we saw a shift. Now that she is using the bathroom often to pee, we seem to magically have less reluctance to use it for poop. Since we have to help her we are in the bathroom with her. She now will point to the door when she has to go poop so that we will leave and give her privacy. How cute is that?!

We are hopeful that this week is just the beginning of a diaper free life for Ainsley. (For the time being she is still using GoodNites while she sleeps.) To determine if your special needs child is ready for toilet training read this article here or this one here.  

* Update as of 2015. Ainsley has indeed been diaper free and fully "toilet trained" since age 7 in 2013. After mastering daytime dryness she also started wearing training underwear to bed. She transitioned to normal underwear (not trainers) the same year. Eventually she no longer needed to be on a schedule. Now days she can use the bathroom at home independently (public bathrooms are much more difficult) depending on her clothing and only needs help with certain wiping if you know what I mean. 

Jan 18, 2013

Happy January!

The first week of the new year I had withdrawals from my Happiness Photo Project. They say it takes somewhere between 3-4 weeks to 66 days to imprint new habits. After a year it was ingrained in me to look for and photograph the things that make me happy. It made me a little sad to stop at first, but another week or so later I am ready to move on to new things, and think of it less and less. Which is really too bad in some ways.  

It has been cold here. Our climate is normally quite mild but this year everything has been frozen. I took some pictures while I was entertaining the thought of continuing my photo project another year. I'm not but I do have a couple photos I want to share.

I Love It When a Dusting of Frost Covers the Ground Turning Everything White
 
Or Walking on a White Lawn All Stiff and Frozen Solid
 
Somehow we didn't get snow despite the long cold spell but it still looks like a Winter Wonderland in our yard. The neighbor's yards are less white, confirming that we are more shaded and get less sun. There is an annoying spot on our walkway that is lower than the rest. A square of slate split and broke off, leaving a dip which collects water. My intention is to re-bond it but we never seem to get to it.  It forms a puddle most of the year and when the temperatures drop, ice. When the kids come home from school they like to stand on it and "skate".
 
It's like the world's smallest ice rink. I like it more than when it's not frozen and they stop to stomp in the puddle. LOL. Some day I'll miss it, I'm sure. They'll walk around it and suddenly I'll be sad. I wonder what age it is when puddles cease to be something fun and become an annoyance?
 
I've been intending to write a post all week but each day I set out to "just do a few other things first" and then before you know it the day is over. A huge contributor is that Steve is in "crunch"at work again. He's even busier now than he was before the break. So now, even though the kids are in school, the second Evie comes home (then the other 2 about 40 minutes later) I'm taking care of snacks, homework, then dinner, tube feeding, cleaning up and bedtime. It's worse the days we have therapy, ballet or basketball. Since (mostly) everything falls onto my shoulders when he's gone so much, I feel like I need to use my day time while the kids are in school wisely. I know I should (sometimes) put off the tidying up, errands, shopping and returns etc. but it's not easy for me to relax and when I know I have so many things that need to get done. 

After a week of crunch Steve (& the whole company) was told he had to work 12 hour days, from 11-11, 6 days a week. In reality there have been many periods over the years that he's worked that much or more (he's at work by 8:30 unlike the majority of the employees), but he would usually spread it out so that he could be home sometimes for dinner.  Giving us some semblance of a normal life even though many days of the week he'd work 16-18 hours. Crazy. Completely. After years of this I'm tired. He's tired. The kids sadly have once again come to expect their dad to be gone and jump for joy (literally) when he comes home. Ainsley signs "Daddy" and looks at me questioningly. If only she could speak, I think she'd say "Why's daddy home?"  He does see them in the morning before they go off to school but many days that's it. At least they have me at home.

Since Steve just started working for this company in November we are hoping that when this game is done things are very different. I find history has a way of repeating itself. So I will not be holding my breath. I try to remember that he could be working 2 jobs just trying to squeak by, like some dads do. Or he could be a philandering dad. Things could surely be better but they could be worse. It's all about perspective and finding your inner Pollyanna.  Raising children is demanding, and a raising a special needs and medically intensive child is extra demanding. I find if I start thinking how unfair it is I become very cranky and that does none of us any good. Life isn't fair. Period. For the time being I have no control over our situation so make the best of it I must.

Ainsley picked up a cold this week and passed it on to me. It was minor. Then I made the big mistake of doing 5 hours of cleaning (seriously my house needed it, yes I could have put it off...again), after the homework/dinner rush I shuttled all 3 kids to Evie's ballet studio and Target. I was wiped. Then I was sicker the next day but ran a full day of errands and I ended up making myself really sick. We must respect our bodies, listen to them and not push them too hard or otherwise pay the price. I'm old enough to know better. I just couldn't stop myself. On the positive side, now I'm sick enough that I have to. Maybe I'll even finish this blog post.

Thankfully Steve came home tonight to take Adrian to basketball practice. I didn't get a chance to tell you. They assigned him to a team that practices 12 miles away. Ugh! You better believe I complained but to no avail, there were no closer teams so my choices were to make the best of it or to quit. We were going to. Adrian cried. He'd been practicing a lot. So we decided to tough it out even when it wasn't the best decision for the rest of us. It's a short season at least. After basketball practice finishes at 8:00 Steve will drive 40 minutes home and then head back to work. At least I won't have to pull to the side of the road to suction Ainsley, or sit in a room full of staring children for an hour (yes they all still stare at Ainsley, I just don't let it get to me anymore.) The first week of practice was the worst because they accidentally double booked the gym and there was a large junior girls team there in addition to the boys. It was overwhelming to sit in a 3 foot isle next to 30 bouncing balls.

Now that it is a new year it is time to look to the future (while remaining present of course) and make plans. I have come to recognize that Ainsley will be who she is. I cannot know what that means. It is a very fine line between accepting this simple truth and helping her be the most she can be. I don't know what she is capable of. And so I must try things and see where we get.
  • In the Spring we'll be trying Botox to her vocal cords and see if that helps her. (No plans to decann anytime soon.)
  • We are working hard on feeding. See below.
  • We are increasing use of her communication device.
  • We are continuing with the very expensive and not covered by insurance Hippotherapy, hoping to achieving standing balance.
  • I need to buy her a big bed.
  • We probably need a new wheelchair very soon.
  • We are..... Potty training.
That is my big news. Katie from the trach forum sent us a talking button. I bought a necklace to hang it from and she wears it to school so she can push the button to say "I need to use the potty." any time throughout the day. Of course when she is at home she takes it off.  We bought some Hanna Unders/Trainers that are too small but the biggest I could find after hours of searching the Internet. Luckily she has a skinny butt. With any luck she'll transition quickly and be ready for normal underwear before she outgrows these.

Here she is getting "the big talk" the night before the transition. She said she wanted to do it.  Of course she says yes to every question we ask. So far it's been 3 DAYS she's been in them ALL DAY. I wish I could say she's been 100% dry. She hasn't. But she has not been wet enough to require a change of clothes until tonight at bedtime, we were just a little late getting her there and didn't want her to sleep with a wet spot on her jammies. I just hope we'll get there in the end. A few accidents are to be expected. She does well at school where she has one-on-one attention all day. What I don't know is if she'll ever get to the point of taking the time to come ask for help, EVERY TIME. Which is what we need. Remember she can't even stand so every trip to the bathroom requires help. But if we don't try we'll never know, and I'm afraid we'll have missed our window of opportunity. I don't want to change adult diapers.

We've been working with her Nova 7 device trying to provide opportunities for her to use it to communicate. Mostly to make requests. I find that if I build the activities into our routines they are more likely to get done consistently. Every day when the kids get home from school they sit down to do their homework and have a snack. Awhile back I started having Ainsley sit at the table with them for homework time. This is the time of day that I try to provide a mixed texture snack and oral motor therapy. She also gets a water bolus through the g-tube. Then I leave her to do "homework" which is often cutting with scissors.
 
This day she navigated herself to the art page to request markers.

She was so pleased when I gave them to her. Hopefully getting what she wants will motivate her to use the communication device in new ways. We are starting to see more of that.
 
We've been working with an SLP. Primarily on feeding. We do the same work we do during therapy at home as often as possible. We've been using jaw blocks, Beckman lip exercises, chewy tube reps, tongue depressions, blowing, working on textures and crunchables. For some reason she is a bit rascally at therapy and actually performs much better at home. I think we're going to be ready to graduate to more oral speech very soon. I hate sitting through therapy I could be doing myself.
 
Here we got her to cooperate by kissing the vibrating fish's big red lips. Too funny!

 
These whistle straws are great.
 
We swipe the yogurt in her mouth on the cheeks so she'll use her tongue to swipe it away.
 
She will self-feed some, if you don't mind a mess and the much slower pace. She'll eat more if I'm doing the spooning.
 
Her eyes have been opening a bit more lately. You might notice in the pictures. With the last surgery we saw some improvement at about a year. We are just past the 6 months point, so maybe there is hope yet that the Frontalis Sling was a good thing.
 
Did you know Ainsley likes to take pictures? She begged for the camera so we let her hold it during the rest of therapy but then she wouldn't give it up. Today I deleted hundreds of pictures she took of the computer. We are dangerously low on disk space even though we have a terabyte.  I thought you might like to see a little of her "work".

Her therapist.
 
A self portrait.
 
 Evie reading in the car. Yes all the kids go along.
 

 
 

It was weird to see pictures of me driving.
 

Then Evie borrowed the camera to take this shot which is so cute and shows just how much fun she was having. Oh my gosh I love this girl SO MUCH.
 
I had more photos and things to write but since my nose has been dripping the entire time I'm typing I'm going to save it for another time.  I'm not sure how much time I'll be blogging in 2013 but I hope you'll keep checking in on my happy girl. 

Jan 5, 2013

365(+1) Happiness Photo Project 2012

I'll tell you a secret. I wasn't 100% sure what I was going to do with my 365 (+1) photos until I did it. There are so many possibilities: A collage to post on the blog, a scrapbook or album, a framed art piece, a video or a simple slideshow. I was reserving the right to change my mind because I'm indecisive. I thought I'd probably do a video but didn't have a vision.  Usually I find during the creative process that the ideas come to me as I work so I was hoping that would happen in this case.  In the end I decided on a video and I am happy with the results and I hope you enjoy it too.

You might be wondering if I'm happier because of this project. Honestly I'm not sure I am because there are so many facets to what we call "happiness".  I do think this project gave me more insight into the things that make me happy and the things that don't. That is helpful information if I choose to use it.  In addition to the photo project I did a private Happiness Project, Gretchen Rubin style, with a different area of focus each month. That was good because I did get things done which pleased my inner task master, that is, until I got to the busy months from October - December when I realized just how much of my time is spent on birthdays and holidays. I can pretty much write off those 3 months. Then there was the daily journal which did give me some insight into my inner thought processes. Some of the things I learned during the whole process this year are:
  • It's the little things that bring the most joy.
  • Most days are really ordinary.
  • There is a lot more good hidden in our days than we realize.
  • There is a lot of drudgery too, and that is unavoidable so you can't let it get you down.
  • I'm not as good of a photographer as I'd like.
  • My husband's work schedule really sucks. (Sorry honey.)
  • I'm a serious home body and pretty happy that way.
  • I like to get things done.
  • My world revolves around my kids.
  • Having a medically complex child with special needs takes up a lot of my time and energy. (Okay I already knew that, but now I'm really sure.)
  • I like food a lot. (Food for thought: If you are what you eat does this mean I really like myself?)



Now that you've seen the video, I know some of you are going to be complaining that it moved too fast. Remember you can go through the archives to look at each week's post. Or here is the link to Shutterfly where you can view the entire album at your own pace.

We watched a slideshow of all 365366 photos on New Year's Day and that was fun. It kind of made me want to continue the photo project in 2013, but I'm trying to resist the urge even though I'm somewhat addicted to the process and keep finding myself thinking "that would make a great happiness photo". (Just as a side note many days there was more than one thing I photographed that made me happy, but in the end I could only pick one photo per day. Often I didn't decide until I did the blog post.) I also think it would be fun to have a book of the photos at the house(through Shutterfly or Blurb). I envision each photo on it's own page with the details I posted about it. That would be 366 pages and that's a big book. It would take some time and would be difficult to share on the blog anyway. I'm not sure if it will ever happen.  My goal for 2013 is get my photos into slideshows and books/albums so I've got my work cut out for me.

A new year is always an exciting opportunity for a fresh start and unlimited possibilities. I wish you all a fabulous 2013 whatever you have planned! But as you try to stick to your resolutions remember what they say: Life is what happens when you are busy making other plans.  

I will end with my very favorite happiness quote.
“People are just as happy as they make up their minds to be.”
Abraham Lincoln