Video: A Day in the Life with Cerebral Palsy and a G-Tube: FALL

VIDEO: A Day in the Life with Cerebral Palsy and a G-Tube – FALL

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Video: A Day in the Life with CP & a G-Tube: SUMMER DAY

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Video: A Day in the Life with Cerebral Palsy (Feeding Tube/G-Tube Schedule)

Video: A Day in the Life with Cerebral Palsy (Feeding Tube/G-Tube Schedule)

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Video: How to Change a G-tube (AMT MINI Balloon Button)

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Video: How I Make a Real Food Blenderized Diet Mix for G-Tube Bolus Feeding

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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!

photo (8)

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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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