Video: How I Bolus REAL FOOD Through a Feeding Tube

Although I’ve largely abandoned updating this blog in recent years, I still check in on it periodically and am amazed that people still visit. Seeking information, readers from all around the world find themselves at our humble little blog.

How do I start the blenderized diet? What are the early signs of cerebral palsy? What is the prognosis for a 28-weeker preemie? What are special needs-friendly toys? What does it mean if my preemie failed both NICU hearing tests? What’s the best pediatric wheelchair? What is g-tube surgery like? 

I’m sure none of us expected to one day be asking these questions. But here we are. I hope that readers are able to find the answers they seek. I keep this blog alive and still update periodically because years ago, I, too, once desperately searched for answers and depended heavily upon the stories of other families to guide me through the uncharted territory of parenting in the special needs world. I have a duty to pay it forward.

In that vein, I’ve created a video. This is for the many readers who come across our blog because they’re seeking information about how to bolus real food through a feeding tube. There are actually a few ways to do this. Here is how I do it.

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Long time, no see!

Hello, dear readers! Over a year and a half has passed since our last update. There are three primary reasons for this:

Reason 1) My work schedule has become more demanding.
Reason 2) I had another baby. Mikey is now almost eleven months old!

From L to R: Jane (age 2), Mikey (11 months), Andrew (age 4), Eleanor (age 4)

From L to R: Jane (age 2), Mikey (11 months), Andrew (age 4), Eleanor (age 4)

Reason 3) I now realize that I blogged as much as I did in Andrew’s earlier years as a means to cope and process. By sharing news with family and friends and connecting with other special needs parents online, blogging allowed me to document and process the overwhelming fears and grief I was experiencing at the time.

I am happy to share, however, that Andrew has been physically very stable since our last update. His overall temperament has chilled out considerably as well. In fact, he is probably the happiest of our four children. Amazing.

The grief and fear are still there but the rawness has dulled. Our days have become quiet, predictable, and pleasant. As a family, it appears we have tentatively arrived at a peaceful acceptance of our unique circumstances. What a relief.

Going forth, I hope to revive our little blog with more frequent updates. There is so much about our journey I’d like to still share with you.

Andrew and Eleanor turn four!

Andrew and Eleanor turn four!

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It takes a village

Andrew and Eleanor turn three!

Andrew and Eleanor turn three!

Ironically, a part-time job of mine in college was working for an agency that provided respite services for families caring for a disabled family member.  I helped care for people ranging from ages sixteen up to their sixties; none of whom would ever live independently. Most were older and ambulatory. Seizures and varying levels of intellectual disability were common. The youngest, at sixteen, was the outlier and most disabled; like Andrew, she would not be alive if not for the medical intervention and technology available today.

Working in the homes of different families allowed me a glimpse of what caring for a disabled family member, particularly for the very, very long-term might look like. As a young and naive college student, I came away from the experience with the following big ideas:

(1) Caring for a child with disabilities will significantly increase the odds of marital discord/divorce, incredible sibling dysfunction, social isolation, and chronic sorrow.

(2) If the child is not going to be institutionalized, families need to obtain help. A lot of help. They can’t do it alone or they will burn out and their family unit will fall apart.

Disclaimer: I know there are many exceptions and lots of marriages and families don’t fall apart. I also realize that obtaining any help, especially quality help, is a choice that many families simply don’t have.

But working at the agency left quite the impression on twenty-two-year-old me. More than teaching me about compassion, it left me fearful. And suffice to say, when I found myself in my very own disabled child situation, it felt like some kind of an awful punishment; my worst parenting nightmare had come true. And I freaked out.

But I’m doing much better now, thank you.

I am doing much better not because I am amazing, inspiring, a super mom, or hero. The crude truth is that if I do appear to resemble any of those things, it is because I am extremely fortunate to not have the entire scope of Andrew’s care fall squarely on my shoulders.

With the dramatic stabilization of Andrew’s health on the blenderized diet a year and a half ago, caring for him has been the the smoothest it’s ever been. But it’s all relative. Because, still, the best analogy I can come up with in terms of what day-to-day care for Andrew is like is that of a colicky newborn–but so much harder. Andrew doesn’t sleep through the night, is fed and burped every two hours when awake, spits up, has temperature regulation issues, cannot stool on his own, doesn’t like to be left alone for more than a few minutes or he cries and passes out, cannot tolerate sitting in a stroller without having it pushed or aggressively jostled, and is basically held/touched/jostled by somebody most of the day even though he is heavy and only getting heavier. Once all these details have been accounted for, Andrew is a happy guy.

And you know what? He’s a happy guy most of the time, thankfully! But it takes an extraordinary amount of work and patience to keep him that way because his baseline state is typically one of physical discomfort.

Going at it alone, with no end in sight, most of us would start to lose it.

I am doing much better because I am not going at it alone. I am fortunate to have–and often, buy–the support system and village to make that possible. This is why I appear reasonably sane and cheerful most days. I get a break from the day-to-day physical grind of constant care, which alleviates some of the emotional baggage accompanying it, which in turn, allows me to focus on the incredible sweetness and gifts of Andrew. I can continue to work but at a part-time capacity. I am also able to give my other two children plentiful one-on-one attention and they get to do the things that other kids get to do. And, equally important, the village allows me to have quality time with my husband.

I realize it isn’t considered good form to talk about the struggles. I know talking about the daily challenges and admitting that it can be hard makes people uncomfortable or might make those who pity us pity us even more. I know first-hand that it is preferable to hear about how amazing and life-changing the experience has been, how it’s made us so much stronger, how I wouldn’t change anything about our lives, how this experience has been such a blessing in disguise, and this and that. There is that, too, of course. But glossing over the struggles strikes me as disingenuous.

Caring for a severely disabled child, particularly over the long, long term can bring weariness. I am as optimistic as they come, seriously. But only three years into the journey, I find myself weary even with the help of my quaint little village. Caring for a child with disabilities has a way of challenging one’s marriage, one’s relationship with their other children, one’s faith, one’s sanity, and every original notion of what one once believed to be so essential for a life fulfilled. With all of this challenging going on, the results can be either really great or really terrible.

Looking back at my two harsh takeaways from my college days as a respite worker, I have much more perspective about what the families must have been struggling with for years and years. During a time when society pushed parents to institutionalize and forget about their disabled child, these parents went against the conventional wisdom of doctors and professionals by choosing to keep their child at home. Consequently, they were sent home with no support, no help, no respite. Most of these families did not have the choice nor privilege of having a village help them until, often, decades later of going at it alone. They also did not have the virtual support and amazing community that the Internet today provides. That’s where I came in, years later, to provide long overdue respite for families, only to freak myself out in the process about the pervasive sadness and dysfunction I felt in each home. But I see now in a way I didn’t see as clearly before that the families I worked with were ultimately acting out of unconditional love for their special needs child. Those parents were doing the best they could under near impossible circumstances and I salute them for it.

Despite my initial freak out about having one of my worst fears come true, things have been okay. In fact, they’ve been more than okay. Often, things are quite awesome. However, it is a challenging journey and not meant to be traveled alone. I am glad to have recognized this early on and to have the good fortune of going on this journey with a loving village at my side.

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Rethinking Therapy and School

This May, a three-year-old Andrew will age out of the Early Intervention (EI) program which has provided all of his therapies to date. The natural next step for most families with a child of significant physical disabilities is to then begin transitioning their child from a home-based therapy program to a special needs school where the child is pulled out of class through the day to receive various services.

At this point in our lives, it is difficult for me to imagine Andrew ever going to school. Based on travel logistics, the demands of Andrew’s feeding schedule, his overall temperament, and a bit of soul-searching as a family, we have made the decision to not send Andrew to school this fall. Instead, Andrew will stay at home and we will arrange for our local public school district to have therapists come to us, much like how it has been with EI. But, even then, we have been re-thinking much about Andrew’s rather intensive therapy life. When we first started with EI, this is what his weekly schedule looked like:

physical therapy 3x
occupational therapy 2x
vision therapy 1x
feeding therapy 2x
speech therapy 2x
special education 2x

In all, that meant that somebody was coming to our home twelve times a week to work with Andrew. On the one hand, it is wonderful we live in a county so generous with services. We also cannot discount how much Andrew enjoys the touch, sounds, and overall attention he receives during sessions with our dedicated team of therapists. But then add to the many therapy sessions: nurse visits, equipment vendor meetings and visits, the near-daily stream of Andrew-related paperwork and phone calls, doctor appointments, and the occasional night or two in the hospital. It is a lot to juggle and it can be hard on Andrew and our home life in general. Our therapists are wonderful and dedicated to their work, but I sometimes question what it is, exactly, that we are all working towards. And at what price?

In some ways, having a child who is as disabled as Andrew brings a certain level of clarity in terms of therapy expectations. Our personal goals for Andrew have shifted from questions such as “How can we get Andrew to walk, talk, and eat by mouth?” to “How can Andrew best experience love and life?”  The old and new goals are not mutually exclusive. But recognizing the futility of the older goals for Andrew, we’ve largely abandoned them and have chosen to, instead, accept and appreciate Andrew as he is. Therapy will always have a place in our lives (it is important that Andrew is continually stretched, bearing weight, and encouraged to move), but it will not be a centerpiece.

Such realizations could not have been made without much reading and contemplation. As Andrew Solomon so eloquently states in his epic tome, Far From the Tree:

You find beauty or hope in the existence, rather than the achievements, of such a child. Most parenthood entails some struggle to change, educate, and improve one’s children; people with multiple severe disabilities may not become anything else, and there is a compelling purity in parental engagement not with what might or should or will be, but with, simply, what is.

Author and speaker Jennifer Johanneson, on her son, Owen, as he once lay comatose in the hospital:

I lay beside him in his bed, in the dark, and contemplated some very uncomfortable thoughts. “What if he dies? How will I remember his childhood?” Then, “What if he lives? How will he remember his childhood..?” This second thought was more harrowing for me than the first.

With this realization, Jennifer withdraws Owen from school, puts together a youthful and eclectic caregiving team, and focuses on providing a more meaningful daily life for her son. She continues:

I made the change just in time; Owen passed away two years later, at the age of twelve. I am grateful to have few regrets. He had a good life, which included two wonderful years in which we didn’t try to achieve anything, and more importantly, I didn’t try to prove anything.

Life after EI for Andrew will consist of a dramatic reduction of official therapies, and involve more swimming, napping, cuddling, walks around the neighborhood, and tagging along with his sisters on afternoon trips where he can fully experience the sensuousness of the world. In short: we envision meaningful, sensory-rich days at a pace our family can handle and will hopefully all look back fondly on. There’s a good chance we will never enroll Andrew in school. But it won’t stop him from continuing to learn about the world in his own way, and for Andrew to teach the world a thing or two as well.

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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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