Navigating the Holidays in 2020
Navigating the Holidays in 2020
How to focus on what matters most during this unusual time
The holidays are a mix of joy, excitement, and stress for most families with special needs, but this year is different for everyone. While most holiday seasons are full of hustle, bustle, and checking things off your to-do list, this year, safety will be at the top of everyone’s list. How to navigate the holiday season during a pandemic is challenging, but keeping a positive attitude can go a long way to making the most of this year’s celebrations. You can still fill your holiday season with joy and fun while also on focusing things that make the most sense for your family.
Create new traditions. Sticking with old traditions is great, but this is also a perfect time to create new ones. Maybe it’s a holiday movie night at home with festive pajamas and your favorite movies. For those who love crafts, you could make a special ornament or holiday decoration together as a family. To give back, you could spend an evening writing cards for seniors at a local nursing home or shopping online for Toys for Tots or any other organization that takes gift donations during this time of year. Celebrate the freedom of new traditions and focus on activities that your loved one with a feeding tube can participate in and enjoy. New traditions that you start this year might just become some of your family’s favorite holiday activities every year.
Adjust old traditions. Old traditions can still be modified to make sense this holiday season. If your family usually does a gift exchange, change it up to a gift delivery where everyone drops presents off (or has them shipped) and then set a date for a Zoom call to keep the fun of opening presents together. Baking and cooking are big for many families during the holidays, and getting together through a video call and cooking and baking the same recipe is a great way to keep up this tradition. Including your loved one with a feeding tube in these traditions is just as important this year, whether it’s helping make the recipe or just joining in on the video call. Adapting beloved traditions allows for a sense of normalcy that is especially needed this holiday season.
Let go of what doesn’t work. Not all traditions will make sense this holiday season, and that’s OK. Big
holiday parties and long distance trips are likely just not possible and may have been difficult for your family even during normal years. Focus on the positive when it comes to needing to skip certain traditions — in many cases, it will give you more time to focus on spending quality time with your family, which is ultimately what matters most. Mealtimes are certainly easier at home, and including your loved one with a feeding tube during mealtime is one of the most meaningful things you can do. If your loved one’s nutritional needs allow, don’t hesitate to blend your normal holiday dinner (or blend sides with a Turkey, Sweet Potatoes & Peaches meal if certain dishes are just too hard to blend) and treats that your family makes every year. This sense of inclusion with the people that mean the most to them can truly make a difference in their holiday season. With all that has happened this year, being included and feeling safe with your family members is the best gift of all.
Staying positive during these tough times and creating new memories will help make this holiday season just as special as any other year. In many ways, the only thing we can control right now is our attitude toward an ever changing reality — something that families with special needs certainly have experience with. Although the holidays may not look exactly the same this year, the love and joy you feel when you know your family is happy and healthy overcomes everything else.
Bouncing Back
Bouncing Back
Never stay down for too long
by Tony Bombacino
I wasn’t raised to have a poor-me attitude, but let’s face it, life is hard. Life will give you everything you can take, and right when you are ready to give up, here’s a little more just in case you weren’t already stuck deep enough in a rut. When you’re the Dad (parent) of a child with special needs, I might offer that it can be even harder, or at the very least, a bit more scary, lonely and tricky to navigate. There is more “dark water” to find your way through that is full of unknown bad things that tend to jump out and completely devastate your life in a moment’s notice. There are more emotional wars to fight and off-ramps you must avoid – “easy way out, next stop.” BUT, life is also beautiful, amazing, and precious – and not to be defined only by the bad stuff or the moments when you feel like you can’t get back up.
“The comeback is always stronger than the setback.” – Anonymous
In my previous Special Needs Dad (“SND”) blogs, I’ve written about my “interesting” (okay, challenging) childhood and path to becoming a father, about “re-defining strong” and about how life has prepared me to be AJ’s Dad, but I think it’s important to talk about the reality of this rollercoaster SND journey and what it takes to not just survive, but to thrive in the face of the unavoidable challenges, heartache, fear, sadness, and confusion that will come.
“Those who wish to sing, always find a song.” – Swedish Proverb
My son AJ is now 9 years old. He’s had a feeding tube since he was 6 months old, he’s never spoken a word or taken a step on his own, he isn’t potty-trained and he’s had more than a handful of seizures just in the past few months. He’s not on any sports teams and doesn’t have any play dates. As Father’s Day approaches again, I found myself thinking about the things I can’t do with AJ and being more aware of my friends who have fully capable sons and of complete strangers who have sons of all different ages. I wondered what they have planned – maybe some fishing or a round of golf or maybe one Dad will teach his son how to grill this weekend. Maybe they’ll watch movies together or just have a game of catch in the backyard. These are things I long for with my son, but thinking about things that aren’t possible is an emotional trap and something I work hard to avoid – there’s a fine line between hope and reality for us SNDs. Somehow, though, I dig down and always find my way back to who AJ is and don’t stay stuck on who he isn’t or comparing him to other kids. If you’re always focused on the challenge or what you’re missing out on, that’s all you’ll see.
“We don’t develop courage by being happy every day. We develop it by surviving difficult times and challenging adversity.” – Barbara De Angelis
For those of you that don’t know me, I’m 6 6” and around 265 pounds; most people would consider me a “bigger guy.” Yet, people who know me will also likely tell you I’m a softie and very open and comfortable with my emotions, but it’s still hard for me to write and admit this. I cry, I get sad, I get angry – sometimes I fear the future with AJ. I get upset that I can’t help him more or give him a better life. My wife and I debate and sometimes argue about how to best care for AJ. I also have an 11-year-old daughter (Luca). She’s my little angel, an unbelievable sister to AJ, and blessing to Julie and me. Many times, often after being up during the night with AJ, I find myself struggling to summon the energy and patience to be the Daddy she deserves (and she deserves the best). Some days I question everything – I think back on when AJ had his first seizure out of the blue and how our lives were turned upside down. I wonder, “why me, why us?” I get scared that I focus too much on AJ and not enough on Luca – and moments later I worry I’m spoiling Luca to make up for the extra challenges she has faced as AJ’s sibling. Some days it’s like being stuck in a continuous emotional, mental, and physical spin cycle. I know many of you can relate.
“It’s part of life to have obstacles. It’s about overcoming obstacles; that’s the key to happiness.” – Herbie Hancock
Father’s Day for me is a time of reflection. It’s a time to think about what it means to be a Dad and a SND and a time to recognize how lucky I am for all the amazing Dads (and father-figures/mentors) I have in my life (beyond my own Dad, too many to list). Looking back on my first 44 (almost 45) years of life, it would be easy to get focused on the bad stuff and all the challenges and obstacles I’ve faced. I could key in on my parents getting divorced when I was 5, losing my Mom when I was 15 or losing my big bro (and idol) a decade ago when he was only 40. I could focus on various career and relationship missteps (and so could you), but for what? The older I get the more I’ve learned to embrace my story – all of it. I’ve learned to give less power to the bad stuff and simply accept that it’s going to come, and likely when I least want it to. BUT, I’ve also learned that the key to happiness, enjoying the rollercoaster ride and getting the most out of every day, is as simple as deciding I’m never going to stay down for too long – that I will always bounce back. Oh, and I realized that I don’t have to do it alone. For me, the Three Fs never let me down — Family, Friends and Faith – with a little music and cooking thrown in for good measure.
This Father’s Day, take a break from the tough stuff. See your child with special needs not for what they can’t do or for what they aren’t, but for ALL they are. Be present in the moment without worrying about the future and toast yourself for all you have overcome and for knowing that you will always bounce back. Happy Father’s Day!
Tony Bombacino is the Co-Founder of Real Food Blends, makers of 100% real food meals for people with feeding tubes. He is husband to Julie and Dad to Luca and AJ. When he isn’t working or chasing the kids around the house he enjoys cooking, fishing, traveling, golfing and rooting for the Bears, Cubs, and Bulls.
Top 5 Tips for Managing the Holidays
Top 5 Tips for Managing the Holidays: More Joy, Less Stress
The holidays are a busy (and sometimes challenging) time for all families, but for those who have a loved one with a feeding tube, it can be an even trickier time of year. Ultimately, we all just want to be able to celebrate with family and friends during this special time of year — to take a step back, have a little fun, and reflect on the year and all we have to be grateful for. Whether you have a feeding tube as an adult, have a child with a feeding tube, or are a caregiver for an adult with a feeding tube, here are a few tips for navigating the holiday season.
- Plan Ahead. Last minute travel or outings can be difficult depending on the medical conditions and special needs in your family. If you’re flying for the holidays, call your airline ahead of time and ask about their policies for medical supplies (many airlines will allow a free additional carry-on for medical supplies). To lighten your luggage load, consider shipping certain supplies ahead of time. Most hotels will hold a package ahead of your arrival and Real Food Blends meals can be shipped to any destination in the United States — just make sure to call your hotel to ask what needs to be included on the shipping label so you’re sure to get your package.
- Always Be (Over) Prepared. Even if you’re not traveling for the holidays, odds are you’re going to be spending some extra time away from home this month (even if it’s just to run typical holiday errands). Pack a bag with extra supplies to have in your car just in case–extra syringes, Real Food Blends meals, buttons, extensions, pump bags, blender bottles, etc. You never know how long an outing might really take (especially when you factor in crowds or inclement weather) and you won’t have to rush as much if you know you have extra supplies on hand if you need to fit in an unexpected meal away from home.
- Manage Mealtime. If you or your loved one only recently got a feeding tube, or if you’re celebrating with friends
and relatives you don’t see
on a regular basis, this might be your loved ones’ first experience seeing a feeding tube. If possible, explain ahead of time how mealtime will work for you or your loved one — we always encourage including family members with feeding tubes during meals just like everyone else! Having a feeding tube isn’t something to be ashamed of — it’s just a different way of getting food into your stomach — so explain the process to loved ones with questions (and even offer for them to help if they want to). Our Turkey, Sweet Potatoes & Peaches meal is a great option during the holidays since it includes several common holiday foods and gives your loved one with a feeding tube another way to feel included during mealtime. - Communicate Your Needs. Whether you need to leave a function early, have to duck out to give a medication, need a designated quiet room to use during the family get-together, or need some extra help getting all your holiday errands done, tell your loved ones what you need and what they can do to help. If that means that certain holiday activities just can’t happen this year, or need to change from previous years, that’s OK.
- Be Kind To Yourself. Even in ideal situations, the holidays can be stressful. No one gets to every single item on their “to do” list and no trip or event ever goes exactly as planned. Remember, it’s important to take care of yourself during the holidays, too, so take breaks when you can and treat yourself however you can. After all, what’s most important during the holidays is spending time with those you love, not seeing how many errands you can run, events you can attend, or chores you can get done around the house. Make sure to make time for your own joy and fun in the middle of all of your “to do’s.”
Hospital Options on Blended Diets
The following is a guest blog post from Weronika Brill RN.
Hospital visits can become a large part of a special needs child’s life. Between surgeries, procedures and pneumonias, spending time in the hospital can be stressful on the whole family. But having a child that “eats” a blenderized diet (BD) through a tube can leave a family unsure as to what their options are.
As a registered nurse that has worked in hospitals almost my entire career, I know that you have a lot of options and that you can be prepared for any hospital stay.
Hospital policy
If there is a regular hospital that you bring your child to make sure to call them to find out if they have a policy in place about blended food. Ask to speak with a patient advocate or a member of the dietary staff.
Tammy shared: “The picture turned out a bit blurry, but I do have to say that Real Food Blends were a lifesaver this past month when my son was in the hospital after having hip surgery.”
It will be good for you to know ahead of time because you can a) choose to go to a different hospital if they have a policy against it or b) if they do not have a policy against it you will have that knowledge in case a staff member tells you that you can’t give your child a home blend.
If policy does not allow home blends, make sure to ask if they will allow Real Food Blends. Even if they have a policy against blended food from home they should allow Real Food Blends because it is shelf stable and “controlled.” Many hospitals are even carrying Real Food Blends, so make sure you find out ahead of time to reduce stress. (Real Food Blends are available through Independence Medical, McKesson or Medline – most hospitals receive daily deliveries of supplies from one of these major distributors.)
Your last option, if they won’t allow blended diets, is asking for a fine puree meal to be sent up that you can mix with milk, water or broth and give through the tube without blending. You can have a meal sent up in almost any way as long as the doctor orders it.
Have the doctor on your side
If you are planning for a surgery, or even if you have an emergency, it is always good to have a calm conversation with the doctor who will be in charge of your child’s care. If there is a planned surgery it is good to speak with the surgeon at his/her clinic before the surgery and also at the time of the check in. If you’re in the emergency department, you can speak with the admitting physician. If the doctor agrees with you, and decides to order your home blend or Real Food Blends, then you are in a great place.
What orders to ask for?
The following are options for orders from the doctor regarding diets. The doctor may not word it exactly like this, but he will understand your request. Note: all puree diets from the hospital will be ordered as pediatric and should be balanced nutritionally.
- For clear fluids: “Clear fluids as per broth and juice from home. Clear fluids to be given through G-tube.” Or “Clear fluids tray (from hospital), clear fluids to be given per G-tube.” Or the doctor may order more specifically “Clear fluid tray 4 meals/day.” In some hospitals the dietary staff may ask for the specifics later.
- For Real Food Blends: If you will bring in your own, “Real Food Blends through G-tube as per home feeding schedule.” If the hospital carries Real Food Blends make sure the doctor or dietary staff knows how many meals or calories a day your child eats.
- For home blend: “Home blend diet through g-tube as per home feeding schedule. Parents will bring in blend.” Or “Home formula through G-tube as per home feeding schedule. Parents will bring in blend.”
- For using hospital puree food: “Fine puree pediatric diet tray (from hospital). Parents or nurses may mix with broth, milk or water and give through the G-tube as per home meal schedule.”
Handling staff members that disagree with your BD
We all know that most nurses and dietitians are supportive and great people, but every one of us has been in a situation where a staff member tells you that you can’t continue what you are doing because it’s against policy or some other reason.
First, you should already be aware of the hospital policy and remind them of it. Also, make them aware of the orders that you already have from the doctor.
If you have any further issues with that employee, do not argue or get upset, just ask to speak with the doctor or resident that is on call. Being a nurse I know we are there to not only ensure the safety of our patients but also to carry out the doctor’s orders and nursing care plan. We are not there to disagree with an order just because we don’t agree with it or feel it is wrong. Once you have a doctor in the room, calmly explain the situation and the orders the attending doctor ordered for you. If you kindly state that there is a miscommunication between the staff member and those orders, things should be cleared up rather quickly.
My biggest piece of advice about communication between you and the staff is that you will get a lot further if you keep a calm demeanor and not argue with anyone.
The diets
- Clear fluid (clear liquid) Many doctors will order clear fluids after surgery or a procedure. Things like bone broth, pedialyte and clear juice are all considered clear fluids. Your doctor may want your child to have pedialyte, but I always give my son home made bone broth instead (being on a ketogenic diet he can’t have the dextrose in the pedialyte). Homemade bone broth has electrolytes and minerals and can sustain a person for a while. My son was on clear homemade bone broth for three days in hospital and all of his electrolytes were normal during that time. If your hospital allows it, you can bring clear bone broth from home in a thermos. My recipe for bone broth is here (Real Food Blends broth recipe is here):
You can also have the hospital send up clear chicken or beef broth. I would recommend the low sodium option unless the doctor wants the regular sodium option.
- Full fluid (full liquid) A full fluid diet is a kind of step between the clear fluids and a regular diet. I’ve seen it ordered a lot for bowel surgeries, as the transition to a regular diet is slower. Things that fall into this diet are milk, milk shakes, custards, puddings, fruit juices, nectars, cream of wheat, cream of rice, ice creams and any clear fluids. You can ask your nurse or dietitian for a full list of approved full fluids for your child. With full fluids they may not need to be blended so it could be easier to have the hospital send up the fluids. You may have to add water or other fluids to make it less thick but you should be able to push all of it pretty easily.
- Regular diet A regular diet is just the diet that your child “eats” at home. It can be a low fat/high carb diet or even a ketogenic diet but it’s still your child’s regular diet. Once this diet is ordered you can use your Real Food Blend packages or any blends that you bring from home. Another option is asking for a regular meal sent up as a fine puree. You can just mix the puree with broth, milk or water and push it down the g-tube. Some hospitals will not allow this, as they may not be able to blend it as fine as needed for a BD.
Real Food Blends quinoa meal being fed to a patient at the Rehab Institute of Chicago
Have a plan
After spending most of 2014 in and out of hospitals my husband and I now have a plan in place. We have to have our own blends because of the ketogenic diet and it’s many restrictions.
- Thermoses: We have about five high quality thermoses that we use every time we have a hospital stay. They are great for keeping things cool but even better at keeping them hot.
- Frozen clear broth: I have a freezer full of frozen broth in 8oz portions. I freeze them in ziplock bags and then put them into a pot (without the ziplock bag), frozen, and slowly bring to a boil. This allows me to quickly grab the correct amount out of my freezer. Because my son doesn’t get as full from the clear bone broth he wants to eat more often so I’ll keep 5-6 portions in my thermos for a day.
- Frozen soup blend: Whenever my son is in the hospital he has an extra sensitive stomach and I don’t give him blends with avocado or anything thick. I give him a blend of homemade bone broth, chicken and some carrot and find that he tolerates soup very well and it soothes him.
- Real Food Blends: Keep Real Food Blends around for your hospital stays or longs days going to procedures and doctor visits. They are also great to have if the power goes out, or if you’re unable to get home in time to feed your child. Many of my clients use Real Food Blends for their child’s lunch at school and for vacations.
- Preparation: When my son is in the hospital, either my husband or I will warm up one day’s worth of soup blend and keep it in the thermos for the entire day. Whoever stays at home for the night is responsible for preparing the next day’s meals. If there isn’t any soup made I will wake up early and start the soup, allow it to boil for two hours, blend a days worth of soup and store the rest in the fridge.
Hospital sign
You can make a hospital sign and place it above your child’s hospital bed to notify staff. Here is the one I made for my son:
If you would like more help please visit my Facebook group Blenderized RN.
The Joy of Real Food Blends – Winners!
HAPPY NEW YEAR! A special thank you goes out to all who entered to win our meals & calorie booster. We were honestly shocked at the amount of entries!
Listed below are the daily prize winners. Each won a Sample Pack of our meals and our Coconut Calorie Booster. If your name is listed below, check your email for details tomorrow. For those of you new to Real Food Blends, we hope your prize is just the start of your real food enjoyment.
Drumroll please! The Joy of Real Food Blends Sweeps daily winners are:
Susan O from Vermont
Kelly V from New York
Jennifer H from Texas
Brian L from Tennessee
Mike W from Missouri
Tammy C from Arizona
April S from Illinois
John H from California
Jessica B from Colorado
David A from Indiana
Kimberly K from Florida
Deborah C from Wyoming
Tarcara E from Florida
Lynn V from Wisconsin
Lisa C from Georgia
Todd T from Alabama
William B from North Carolina
Deb N from Wisconsin
Carol D from New Hampshire
Dawn O from Massachusetts
Joan T from California
Chaney R from New York
Robin F from Arizona
Dollie T from Michigan
Leslie W from Oregon
Kelsey B from Idaho
Lillian J from Michigan
Luci B from Florida
Our Grand Prize and runner up winners will be notified & announced shortly!
