On not seeing eye-to-eye with a doctor

At 22 months of age, Andrew weighed approximately nineteen pounds when his g-tube was surgically placed. A few weeks after g-tube placement he was down to eighteen pounds and looking and acting like death. At 23 months, despite reservations from our doctors and in lieu of the mediocre surgery options presented to us, I started him on the blenderized diet and it was the best possible thing to ever happen to Andrew’s GI system as he quickly stabilized and started to enjoy life. At 27 months, he now weighs twenty pounds; still below where he is apparently supposed to be. But we must remember that before the diet, Andrew’s life was one of pain, suffering, starvation, and question marks about how much longer he could live like this. Without the diet, he would not be enjoying his life the way he has been these past few months. His health is now predictable and stable. Things have been quiet. He is alert and smiles and laughs. I think he is doing fabulously.

After not having visited GI Doctor and Dietician in several months, I was looking forward to seeing them and singing accolades about the diet and how wonderfully he was still doing. I was sure they would think so too.

But they were not. The first thing GI Doctor said to me as she walked into the exam room–after being briefed by Dietician after a conversation with me–was: “Andrew is doing EH. He should be doing A LOT better.” Huh? She is not pleased with his weight gain. He should have gained more weight by now. Maybe I can try more olive oil, more Duocal, more something with his diet, but at his age and height, he should weigh more. He should be doing a lot better than this.

I told her that while he doesn’ t weigh as much as she’d like, his life and health are SO MUCH BETTER THAN IT USED TO BE. He sleeps! He stools! His reflux is controlled! He stopped retching all day and night! He smiles! He laughs! Things are so stable! Our day-to-day family life is finally normal and enjoyable!

“Yes, but he really needs to gain more weight.”

I asked her why weight was so, so, so important. Why this fixation on his weight? His twin sister, Eleanor, is the same height and only weighs two pounds more (she has always been solidly in the 2-3 percentile of growth) and nobody is concerned about her. She didn’t really have much to say although she did acknowledge (I think because she probably sensed my annoyance) that, yes, he is stable and doing better than he used to. But, again, he needed to gain more weight. I told her okay. She said she’d see us again in a few months. I said okay.

We are not going back.

I am wary of a doctor so fixated on weight as the barometer of overall gastrointestinal well-being that they are unable to see and genuinely acknowledge actual progress. I am wary of doctors who use charts and figures meant for typically developing children and applies them, without question, to a severely disabled child who does not fit neatly into any medical text book or chart.

What if another family in our shoes did listen to their doctor, decided that their child must not be doing so well after all, and their gastrointestinal focus became weight-centric?

Andrew is blessed to have fiercely knowledgeable parents (including a father who happens to be an adult neurologist) to advocate for him in the complex medical world. However, I feel weariness about how the majority of major medical decisions made to his benefit have been because my husband and I were the ones who took the time to think out a solution, come up with a plan, and then convince our typically reluctant doctors to allow it to happen.

Where does that leave the families of severely disabled children who do not have the savviness to best navigate the system for their child’s benefit? It’s depressing to think about.

On a happier note, here are some non-depressing pictures of our handsome little guy:

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Still blending away

This is more of an informational post for anyone who is curious about Andrew’s daily life on the blenderized diet. Here is a sample of Andrew’s daily schedule, which starts whenever he wakes up:

8 am: Eat 5 ounces of blenderized food through his tube.
10 am: Drink 10 ounces of water through his tube.
12 am: Eat 5 more ounces of blenderized food through his tube.
2 pm: Drink 10 ounces of water through his tube.
4 pm: Eat 5 more ounces of blenderized food through his tube.
6 pm: Drink 10 ounces of water through his tube.
8 pm: Eat 5 more ounces of blenderized food through his tub.

Basically, he is given something in his tube approximately every two hours while he is awake. We alternate between food and drink.

We have found that Andrew will throw up his food if the following guidelines are not carefully followed:

  • We’ve experimented with volume quite a bit and found that he is only able to keep down 5 ounces of food at a time and 10 ounces of water at a time. We cannot combine the 5 ounces of food and 10 ounces of water into one feed because he throws it up. Two hours is about the right time when his body is ready for more food or drink.
  • He stools twice a day: once in the morning and once at night. If he misses a stool for whatever reason, he throws up.
  • If he is not well-rested (skips his nap for example, or did not sleep well at night), he will throw up.
  • He must be burped really well after each feed and drink or he will throw up.

    It seems like a lot to keep track of but one gets used to it and it becomes second nature. Keep all these variables in check–which is most of the time–and we have a happy and healthy Andrew.

    I have largely stopped measuring calories so meticulously with his blends. However, here is a sample blend I recently made him:

    1.5 pounds of ground beef
    2 cups of prune juice
    1 cup of chocolate soy milk
    1 cup frozen veggies
    1 cup frozen fruit
    1/2 a cup of Kale
    1 whole banana
    2 slices of whole wheat bread
    1/2 cup of blueberries
    8 tbsp of olive oil
    1/2 cup of blueberries
    1/2 cup of cauliflower
    8 scoops of Duocal

    Each blend typically lasts about 1.5 days.

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    Plenty of sibling love to go around

    Andrew has probably been working a solid two years now on trying to get his fist into his mouth. The cerebral palsy makes his arms very tight so this is a very difficult task for him to do without a little help. But being the determined little guy he is, he has never stopped trying. In recent weeks, all that determination has paid off. It’s still difficult and he isn’t able to do it every time, but look!:

    Noticing that Andrew has developed a fondness for sucking on his fist, Eleanor has really gotten into it too and has been very supportive of Andrew’s efforts:

    They love each other very much. Fortunately, there is a lot of love to go around because they now have a brand new baby sister, Jane, to love as well. Baby Jane was born this week at exactly 38 weeks, weighing 6 pounds and 14 ounces.  We are elated.

    Jane

    Eleanor and Andrew meet Jane for the first time.

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    Our Blenderized Diet Experience So Far

    In our last post, we discussed the surgery options presented to us by doctors to address Andrew’s severe vomiting and reflux. Wary of more surgeries that may or may not even work, I did some internet sleuthing and came upon the blenderized diet (which, also, may or may not work.)

    We are now about two months into the diet. The results:

    • Andrew went from vomiting up every ounce of formula feeding to keeping down the vast majority of his meals.
    • By day 4 of the diet, Andrew was 100% off of formula.
    • Andrew went from stooling 1-2 times a week of straight diarrhea to 1-2 very healthy looking stools a day. This happened within a day or two of starting the diet.
    • Andrew stopped retching and gagging for no apparent reason at all hours of the day.
    • Andrew went from taking a couple 10-15 minute cat naps a day to 1-2 hour long naps. He also now sleeps through the night for 10-11 hours with no night feedings.
    • Andrew is gaining weight. Not a whole lot, to be honest. But he stopped losing weight at least.
    • Andrew is happy and comfortable. What more could we ask for?

    Clearly, formula had not been agreeing with Andrew, as his body is now responding appropriately and healthfully to real food. We are simply bewildered and beyond pleased at how amazingly fast, drastic, and profoundly positive the blenderized diet has been in treating not only Andrew’s severe reflux but his overall GI system. We recognize that the blenderized diet is not for all children and that not everyone with severe GI problems will react in this way. However, I fully believe that it should be an option made available by the medical community to parents as a treatment option in addition to the most commonly recommended surgeries to treat severe reflux (which, as I mentioned earlier, are generally presented with the caveat that it may or may not work.) The blenderized diet is not a familiar concept to most U.S. hospitals where commercial formula has reigned king since its introduction in the seventies. Fortunately, at a number of top children’s hospitals like CHOP and Cincinnati Children’s, the GI departments  have a number of doctors and dietitians who are familiar with it and often do recommend and provide the proper supports for parents to start it. In fact, this 2010 study by Cincinnati Children’s Hospital of thirty-three children with failed nissen-fundoplications who trialed the blenderized diet showed a 75-100 percent immediate reduction of 50 percent or more in reflux and vomiting episodes.

    For Andrew and our family, the blenderized diet has been completely, utterly life-changing. It boggles our minds that had we not come across the diet on the internet (as it was never presented  as an option by our medical team) that Andrew would inevitably have had to endure more surgeries. What we also find interesting is that if you think about it, the diet isn’t anything particularly radical. Our son was throwing up his formula and suffering from hunger and dehydration for months. Surgery options were presented, yes, but formula as the problem was never ever considered a possibility (most children with g-tubes tolerate formula perfectly well.) But why not just puree him some real food, feed it through his tube, and see if his system would find it agreeable? The human body was designed, after all, to eat real food.

    For those interested in the practical logistics of the diet, I’ve broken down how we’ve implemented the diet in basic categories below. Hopefully, this will be of help to somebody out there! And contrary to what others may think, it is not that much work at all to create a blend. I find it so much easier to create a blend in bulk for Andrew than to cook for the rest of the family. Before beginning any drastic change in your child’s diet, however, please be sure to run it by your medical team first. There may be some resistance, as there was in our case, but it’s important that you have a supportive doctor and dietician to help guide you through the process. Ours didn’t know a thing about the diet and were not particularly supportive at first. But they acknowledged that it was because they were not familiar with it. The important thing was that after a bit of convincing, they were willing to trial it and learn.

    Resources That Gave Me Confidence to Start the Diet:
    Homemade Blended Formula Handbook by Marsha Dunn Klein
    Ainsley Rae blog: great practical tips on how to get started, how-to youtube videos
    Pros and Cons of the Blenderized Diet
    Facebook groups for Blenderized Diet and Children with Feeding Tubes

    Our Essential Supplies:
    Vitamix or Blendtec blender. Vitamix will provide a 25% discount for a refurbished blender if the purchase is for medical need, bringing the cost down to $299 plus tax and free shipping and handling. Call 1-800-848-2649 for more information. I’m not sure whether Blendtec offers discounts but I know they are known to donate blenders for free to families in medical need of one.
    60 cc squirrel syringes
    4 and 8 oz evenglo glass bottles

    Andrew’s First Blenderized Diet Recipe: this one comes out to about 34 calories/oz. His Elecare formula is 30 calories/oz. In the other recipes I’ve come up with, the ratios for protein/grains/oils/veggies/fruits generally stay the same. I just swap different foods each time for variety.

    3 cups of roast chicken 700 calories
    1 cup orange juice 100 calories
    1 cup soy milk 100 calories
    2 slices of whole wheat bread 200 calories
    1 cup blueberries 70 calories
    1/2 cup broccoli 40 calories
    1 cup spinach 60 calories
    1 tablespoon of olive oil 120 calories
    1/3 cup apple sauce 60 calories
    1/2 cup peas 60 calories
    1/2 banana 50 calories
    1 container pureed pear 45 calories
    Total Calories: 1645

    Look at that smile! Andrew loves real food!

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    2 Options to Try to Keep Andrew’s Food Down

    Thank you so much for the advice and general support and love from our last post about Andrew’s feeding woes. We really appreciate it :).

    Andrew is out of his 4-6 oz a day listlessness and has now worked up to about 16-20 ounces a day (which translates to about 480-600 calories a day.) Our doctor and nutritionist would like to see a minimum of 1000 calories for steady weight gain.  Otherwise, keeping Andrew comfortable and the food down is still our main issue. While we keep plowing on with what we’ve been doing (which hasn’t been going as well as we’d like), we’ve been considering other options as well. Here are our top two options:

    OPTION 1: J-TUBE AND/OR NISSEN FUNDOPLICATION SURGERY
    Right now, Andrew’s tube brings food straight to his stomach, but he’s still refluxing and vomiting a lot of it up. A J-Tube would bring the food straight to the jejunum, near the entrance of the small intestine, thereby completely bypassing the stomach. The benefit to this, if it works, is that it makes it a LOT harder to reflux up stuff from the small intestine than from the stomach. The other surgery option, which could be coupled with the j-tube is the nissen-fundoplication: surgeons take a portion of the stomach and wrap it around the esophagus. The nissen sometimes helps, sometimes doesn’t. Generally, it can get rid of the ability to vomit but not the urge. We are more open to the j-tube over the nissen. But, ultimately, we’d love if we could avoid any more surgeries; Andrew’s already had four on his little tummy already and he’s not even two! Surgery will be our last desperate option. And such is the nature of severe reflux, but surgery may not even help all that much. One will just never know until they try it. We’ve decided to put any conversations about surgery on hold until summer at the earliest. We have too much going on between now and then.

    OPTION 2: FEED ANDREW REAL FOOD IN THE FORM OF A BLENDERIZED DIET
    Most medically complex babies, children and adults who depend on a feeding tube for nutrition drink specialized formula. Forever. They are fed nothing else but the formula for the rest of their lives.  It is nutritionally complete, easy for parents who are juggling so many other needs with their child, and preferred by doctors and nutritionists because it’s complete nutrition and easy calorie calculation.

    To me, the easiness of the formula preparation has always been appealing. However, the idea of Andrew being fed formula through his tube forever and ever has always made me slightly uncomfortable for two reasons: First, when Andrew was eating by mouth–although not very good at it–he was eating real, homemade, nutritious food. As any parent will tell you, preparing and feeding one’s child good, nutritious food is a primal urge of sorts and immensely gratifying. For me, Andrew getting a g-tube and no longer eating by mouth was difficult to accept and took over a year of going back and forth before finally agreeing to have it done. And then to have him go from real food to a 100% formula-only diet forever felt like another small kick. Which leads me to the next reason I’ve never felt completely comfortable with Andrew’s formula-only diet: his Elecare formula is 53% corn syrup! Yuck!

    Because Andrew refluxes so much of his food anyway, I figure I have nothing to lose in trying something called the Blenderized Diet. In its most basic form, I would take real foods like vegetables, fruits, grains, and meats and blend it in a super high-speed blender until it becomes liquid form. And then, like his formula, I’d feed it to Andrew through his tube the exact same way. My hope is that Andrew will eventually switch to a mostly real food diet (fingers crossed that he tolerates it) and, like so many other families have found, the real food will calm his tummy down enough to keep it down.

    Our nutritionist and GI doctor said they’ve never had a patient go the blenderized route and weren’t very familiar with it. As this is rarely even presented as an option by most medical professionals, I wasn’t surprised. However, there are a handful of GI departments around the country–mostly at the top children’s hospitals, like CHOP or Cincinnati Children’s–that encourages  and offers parents the proper supports to get started with the blenderized diet. Our medical team was not discouraging of it, however, and said they’d be willing to work with us as it would be a learning experience for them as well.

    Ending on a random note, a cute video of Eleanor and Andrew. Excuse that it’s sideways.  I couldn’t figure out how to flip the video around so that it’s horizontal. It still amazes us how sweet, gentle and appropriate Eleanor is with her dear twin brother.


     

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    G-tube Woes, More Seizures, First Dental Visit

    Our euphoria with the G-tube at home lasted approximately a day and a half after our hospital discharge. The good news: it’s still so easy feeding Andrew! Just put the formula through the tube and then done! The bad news: No matter  what the rate or volume of feed through his new Kangaroo Joey Feeding Pump,  Andrew is miserable, gassy, and needs to be vented constantly.  The food basically comes back out whenever we vent him. For a while, we had reasonable success feeding him via gravity feeds using a syringe, bolus-style. But while he could tolerate 4 ounces of formula at first, he became increasingly less tolerant. It went down to 3 ounces, then 2 ounces. And now he can only drink  1 ounce at a time without vomiting it all up almost immediately. He also spends most of the day chewing on something, swallowing more air, constantly refluxing, and occasionally gagging. Lovely. So he has lost two pounds since he’s had his g-tube placed and is back down to a whopping 18 pounds. Our GI doctor and the surgeon are obviously concerned. But I think it’s clear they have no idea what’s going on, exactly. Andrew’s been drinking 3-5 ounces total the past couple of days. We were hoping he’d have a minimum of 30 ounces after the surgery. I think it’s just a weird cerebral palsy-related neurological thing and, hopefully, the food intolerance will pass.

    And, of course, another night in the hospital. This time, for an overnight EEG to see what was going on with Andrew’s seizures. Basically, whereas we couldn’t see his seizures before, we can definitely see them now. And, apparently, Andrew is having seizures all day long. They may look pretty benign but are rather sinister: he tenses a bit, looks up , and gazes to the right or left. When most people watch him, they think he is being curious and adorable. I don’t usually share that they’re seizures. The other seizure type he has is that he looks as if he’s completely zoned out and it’s difficult to get his attention. So, for now, he will continue with a medication called Zonegran/zonisamide. We’re just going to add a fairly new drug called Banzel/rufinamide to his daily cocktail of drugs.  Banzel is a fairly new FDA-approved drug for the treatment of Lennox Gastaut Syndrome. Seizures, at their worst, have a way of stealing the essence of a person. For Andrew, it means he is often in his own world and unable to come out of it easily, unable to smile, unable to respond to external stimuli.

    Adding to Andrew’s thrilling week, we took him to his first dentist appointment today. Unlike his twin, Eleanor, who has lovely pearly whites, Andrew’s teeth have always been tiny, chipped, yellow, and stained. The weak teeth situation is likely a result of his prematurity, poor nourishment from not eating in the NICU for four months, and the countless number of medications he has been on. Fortunately, there are no cavities. We are to return in six months, however, when all his baby teeth are in. At that point, Andrew will likely be sedated, taken to the OR, and have his teeth all restored and covered with a protective enamel of some sort.

    But between his feeding and neurological woes, Andrew has been a bit listless, sad, and rarely cracks a smile anymore. The poor guy just looks exhausted :(. Hopefully, our next update will be a more positive one.

    Dad holding Andrew during the dentist visit. Thankfully, the exam itself was very short.

    Andrew's new wheelchair stroller, the Convaid Cruiser, is here! We love it. More on this later.

    Andrew's new Wombat Snug Seat is also here! I see a lot of possibility with this one but not until Andrew is healthier and more comfortable.

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    thank goodness for special needs blogs

    Parenting a severely disabled child can be an extremely isolating experience. But thanks to the Internet, it doesn’t always have to be this way.  Without a doubt, reading the poignant words of families who are also on this journey has been essential in maintaining a healthy state of mind about our own extraordinary circumstances. Whereas our blog is mostly medical updates and photos for friends and family, these get into the heart of special needs parenting and the world is a better place as a result. Below are a list of some of the wonderful blogs that I am so thankful are in existence!

    Over at the Bloom Special Needs Blog, Louise chronicles the trials and triumphs of dear Ben, regularly tackles difficult issues that come up in the realm of special needs parenting, and serves as a pulse for interesting special needs books and media stories. A couple posts that particularly resonated with me:
    When there isn’t a happy ending
    A fate worse than death?
    Friends in need, friends indeed

    Stacie, over at Mama Lewis and the Amazing Adventures of the Half-Brained Baby, blogs about her cutie pie daughter, May.
    A Hero or Just a Parent? from the New York Times Motherlode blog
    If she can do this, I can from The Guardian
    What’s God’s plan for May?

    Jennifer, over at YES or NO: Raising a boy with multiple severe disabilities, has recently published a memoir about her experiences raising Owen who passed away last year at the age of 12. In addition to finding her writings on accepting your special needs child especially thought-provoking, I love that she writes about her other son, Angus, in relation to Owen as well.
    On fake work, cheerful pretend, and hope as snake oil
    It’s enough to break your heart wide open

    I’ve included Kelly’s blog, Unlock the Secret Voice, because I’ve found no other blog that addresses the content that she does. Kelly recently made the extraordinarily difficult decision to place her severely disabled teenage son in a residential home. Her writings about the experience are brutally honest and filled with so much love for her child that it will make your heart hurt.

    Other wonderful blogs:
    Love That Max
    Bird on the Street
    The Gort Family
    Caleigh’s Corner
    How Life Happens
    Elijahland
    Thinking of Starting a Blog
    Outrageous Fortune

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    Hello, Feeding Tube

    I’ve chronicled our woes with feeding Andrew here, here and here. In a nutshell: despite intensive feeding therapy, Andrew is not physically and cognitively coordinated enough to eat by bottle and mouth in a comfortable, enjoyable, and consistent manner. And with the results of recent swallow studies showing that he aspirates fluids into his lungs during feeds, it has gone beyond mere coordination and pleasure issues to a medical one–it is not safe for Andrew to eat by mouth. I guess this didn’t come as too much of a surprise considering how much choking, gagging, and spitting up was involved with pretty much any feeding attempt. This week, we decided to get Andrew a feeding tube and made the decision that Andrew will never feed by mouth again. We returnedhome from the hospital yesterday.

    The hospital stay sucked. I’m not sure how else to put it. But it did. Andrew was also in a lot of pain and was on zero pain medication after the surgery. We had to harass nurses to harass doctors to put the order for morphine in. Two days after surgery, he was still in a lot of pain. Three days after surgery, today, the pain seems to have subsided and Andrew is smiling again. So if you’ve found this blog researching what gtube surgery might be like, just know that despite what the surgeon tells you, it will hurt and serious pain meds will be needed beyond Tylenol.

    So, what’s it like at home with Andrew and a feeding tube? Pretty great. I know, that sounds like an odd thing to say. As parents, we knew that feeding Andrew took up hours and hours and hours of each day. But exactly how much time it took didn’t really hit us until today when feeding Andrew took less than five minutes for each meal and we had so much… time all of a sudden. But before we get into too much about how much more relaxed our household is, it’s important to note that the months leading up to the decision were wrought with varying levels of turmoil. After all, any parent can share what a rewarding feeling it can be to watch their child eat. Any person can share how much they love to eat and what a pleasure it often is. For our Andrew–whose body is broken in so many ways–we relished that he could still eat by mouth at all. It was the one normal physical thing he could do, whatever that means, even if he was terrible at it. And in the end, everyone was miserable with Andrew suffering the most. So as I was saying, things have been pretty great with Andrew’s feeding tube in place. The stress of feeding Andrew has been removed and he is so, so, so much more content with a full belly that did not have to involve choking, gagging and crying to obtain.  This was the right decision, indeed.

    There is much more to update about. But until next time, here are some photos from our recent hospital stay:

    Getting comfortable before his swallow study

    Andrew's last meal by mouth ever the night before surgery.

    Moments before being carried into the OR by Dad

    Post-Surgery ET moment

    Hanging out with mom in the hospital

    Andrew's new feeding tube (a Mic-Key PEG)

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    Loving a Special Needs Family Member

    Although our twins are nineteen months of age, we can’t help but sometimes feel as if Eleanor operates very much as an only child. While Eleanor is a healthy, energetic, and spunky toddler, Andrew is blind, developmentally a newborn, and has an intensive therapy schedule; all of which makes for a difficult play partner. But to our delight, in recent days, Eleanor has been making the best of the situation in the following ways: we’ll find her snuggled up next to Andrew on the floor, she loves pulling off his socks, and kisses him tons. She presses his belly button (or what’s left of it, long story) and says “beep,” and loves to rock his chair. When he cries, she yells, “NO!” and “WHY?” and sometimes grabs his hand and pulls it to her cheek. Eleanor carefully watches what Andrew’s therapists do with him and when they leave, she takes his therapy toys and gadgets and mimics what they do.  All in all, she is a fine twin sister and it is in these moments that we can sometimes forget the grief that can come with the two not being able to play together in the way that most siblings do. Here is a video of the two. Please excuse the mess! “Bbo-bbo” means “kiss” in Korean:

    Eleanor loves Andrew because we, as parents, love Andrew. Generally speaking, when it comes to interacting with a special needs sibling, children take queues from their parents. We’ve noticed this outside of the family as well: if a parent acknowledges that Andrew is there and models warm and loving interactions with him, the child tends to follow suit. This is awesome when it happens. With our own family, we hope that Eleanor continues to watch us model our deep love for Andrew and that her experience as Andrew’s twin sister will help mold her into a more kind, loving and understanding individual.

    Recently, our family had the privilege of meeting another family who has been on this walk much longer than we have–27 years! Like us, they also had preemie twins and one twin became severely disabled after a devastating infection that occurred while in the NICU. The lengths this family has gone to incorporate their severely disabled adult daughter into daily family life is inspirational, and the mother shared how having a special needs sister had shaped each of their three other children in a positive way.  We even got to meet one and she seemed pretty awesome!  Below are just a couple of the many photos we took of home adaptations made to accommodate their daughter’s needs. Not included are photos of a two-car garage that was converted into a lovely first floor suite,  too. Having never met another family with a child similar to Andrew, it was a treat to meet and talk with somebody who has been there, is still there, and has lived to share her experiences–the good and the bad–with sincerity and a smile.

    Custom-designed, the most beautiful wheelchair ramp ever!

    Like Andrew, their daughter LOVES swimming. So they built an accessible pool in their backyard. Note the chair lift in the back.

    Another lovely ramp that leads from the deck to the pool area.

    And this is just the outside!

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    Adaptive Seating and Wheelchair Decisions

    The time has come for us to really start thinking about and acting on getting Andrew adaptive seating for the home and a wheelchair. Aside from his beloved bouncy chair, Andrew has been using the Fisher Price Space Saver High Chair as his primary seating device.  It was a long road getting Andrew to even tolerate sitting in it. Now that he sits in it fairly well, we have found that he needs significantly more support for the head and trunk.

    Here is a Andrew sitting comfortably in his Fisher Price seat.

    With the help of Andrew’s physical therapist and an equipment vendor, we tried out two different chairs that seemed appropriate. The first is called the Wombat Snug Seat Model 347. Here is a photo of Andrew all snapped in:

    Some notes on the Wombat chair:

    • It is seating designed specifically for the home.
    • It has wheels so is easily rollable. It can be adjusted high (so Andrew would be able to sit with us at a table) or low (so Andrew can interact with his sister on the floor.)
    • It offers a 22 degree tilt and comes with many head rest options, including one with speakers.
    • It is 24×28 inches
    • Comes with dorsal flexion
    • Cost is approximately $4500
    • We like that it is fairly compact compared to other seating devices.
    • Andrew sat in it happily for over an hour!
    • Lots of lateral support so that Andrew’s arms were free to rest on the tray.

    The vendor also said that the Wombat XPanda model is very popular as well but the cons, in her opinion, outweigh the pros. Mainly: It’s over fifty pounds and cumbersome to adjust straps/tilts/heights. And while it does come with a stroller base, the stroller base is also very large and heavy.

    We also tried out a new model of a Rifton chair.

    Rifton chair notes:

    • At 25×36 inches, much wider and longer than the Wombat.
    • Rifton chairs last for a long time and are known as an industry standard.
    • Andrew could use it longer as the growing capabilities offer more.
    • No tools necessary to adjust tilt/height/straps.
    • Only one head support option, which isn’t enough for Andrew.
    • Comes with a rocking option for children who rock/stim.
    • Took about twice as long to get Andrew strapped in than the Wombat.
    • Does not offer dorsal flexion.
    • Upholstery is easier to clean than the Wombat.
    • Does not offer enough lateral side support to free up Andrew’s hands.
    • Cost is approximately 5k.

    Here is a photo of the two chairs, side by side:

    We decided to go with the Wombat chair.

    We also considered stroller wheelchairs and decided on the Convaid Cruiser.

    The Convaid Cruiser without Andrew

    The Convaid Cruiser with Andrew in it

    This was a fairly easy decision and online research seemed to confirm that it’s a very solid stroller wheelchair option as well. It folds up easily, is adaptable up to 100 pounds (Andrew is just under 20 pounds right now), fairly light compared to other stroller wheelchairs, and as far as wheelchairs strollers go, on the more aesthetically pleasing side as well. I like that while it looks a lot like a stroller, it is also very clearly a wheelchair. Something in the middle.  Andrew fell asleep in it as soon as we put him in so we took that as a thumb’s up from him. We’ve been in need of a stroller device with more support for some time now. We’ve mostly been strolling Andrew around in his Graco Snug-Ride car seat with the Snap and Go, a combo abandoned by most parents by 7 months of age (he’s 18 months now!)

    We are ordering the Wombat and the Cruiser through the Early Intervention program so we hope that both items get approved and we can receive them in a timely manner. It was admittedly a bit difficult at first to see him strapped into the equipment. Even though we have known about Andrew’s disabilities for a long time, it felt as if we were stepping into a new phase of Andrew: the transition from Andrew the baby to Andrew the disabled child in a wheelchair. But those thoughts were quickly pushed aside as we saw all the possibilities in terms of feeding and other therapies that the new chairs would offer.

    Other adaptive changes for us to consider in the next couple of years: adaptive bath seating, a more appropriate car seat (any suggestions?), a wheel chair adapted car, moving into a home that is more wheelchair friendly, and obtaining a handicap parking placard.

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