Being told your child is going to need a feeding tube, is heart breaking. Not only does it initially feel like a failure, or a loss of hope that your child will be able to eat, but there's a lot to deal with when a g-tube is placed and it's a pretty scary situation at the beginning. Not only that, but I have yet to hear from a parent that anything other than formula was suggested for their child's enteral nutrition. Sure, there may be the option of one formula brand versus another formula brand, but that's it, formula is the only option given to parents.
I believe in nutrition as a form of healing and unfortunately, corn syrup doesn't rank high, or at all, on the list of foods leading to a sustainable and energetic lifestyle. This is why when I saw that my son was not thriving on formula, I had to make a change, and that change began with whole foods.
Julie Bombacino is another mom who quickly learned the effects formula had on her son. She did her research and began feeding her son a blended diet rich in good fats, protein and calories that weren't based on unpronounceable ingredients and mainly comprised of corn syrup. Julie realized the need for tubies to have an option other than formula, and she also had the knowledge and wherewithal to become the founder and CEO of the company Real Food Blends.
I think it is incredibly exciting to see this company develop and launch their first few meals. Recently, Isaac had the opportunity to try out the three meals offered by Real Food Blends, and I have to say, it was so convenient and I loved having a break from mixing up my own blends and doing all of the cleanup that is involved. Unfortunately, Isaac can't share his own opinion, but he didn't have any adverse reaction to the ingredients. I did slightly thin the Quinoa and Chicken Meals with water or hemp milk since Isaac doesn't need quite that many calories and fat in eight ounces, but it was great because I was able to get a little more than one feeding out of each pouch. I also thinned the meals because Isaac is very particular about his feeding routine and cooperates best when we use the pump for his feedings. Using the pump requires that the blend be relatively close to the thickness of formula.
Now, as for the ingredients. It really is made out of real food. Check it out:
Salmon Oats and Squash: Water, Squash puree, salmon, pomegranate juice concentrate, rolled oats, flaxseed oil.
Quinoa Kale and Hemp: Water, Kale, Grape Juice Concentrate, Hemp Powder, Extra Virgin Olive Oil, Quinoa, Cinnamon
Orange Chicken, Carrots and Barley: Orange Juice, Cooked Chicken, Carrots, Pearl Barley, Grapeseed Oil, Water, Ginger, Roasted Sunflower Seeds
As stated on the company's web-site: "We are not medical professionals and are not making any medical claims about our food. Our meals are truly just real food. Please work with your medical team before making any changes to your diet, especially if you are tube-fed."
The company's Advisory Board does include a dietitian and the first two meals are FDA approved and the chicken meal is USDA approved. Real Food Blends also makes no claim that their blends provide complete nutrition and readily state, "The same way that oral eaters need to eat a wide variety of foods over the course of a day or week to achieve necessary nutrients, our meals are just that – meals. They are not intended to be anyone’s sole source of nutrition. They are each well-balanced and together offer a good variety. We developed these first meals with the intention that someone who is living off 6 or 8 cans of formula a day could easily add some nutritional variety to their diet by replacing a can or two with some real food meals. Those that already blenderize for tube-feeding can use our meals as a convenient option."
A big consideration for families with high medical costs is always whether or not insurance will cover enteral nutrition and all of the other medical supplies that are required for tube feeding. Real Food Blends is working hard to gain insurance coverage and reimbursement for families caring for a loved one with a feeding tube. Just last week, they were able to announce this exciting update: "We are pleased to announce that Real Food Blends™ products have been approved by the Center for Medicare & Medicaid Services Healthcare Common Procedure Coding System (HCPCS) for code B4149. The code B4149 applies to enteral formula, manufactured blenderized natural foods with intact nutrients, includes proteins, fats, carbohydrates, vitamins and minerals, may include fiber, administered through an enteral feeding tube, 100 calories = 1 unit."
Please check the Real Food Blends web-site for more information regarding Medicare and Medicaid coverage.
I think it's revolutionary that Julie saw a need for children and adults dependent on enteral nutrition, and she did something about it. Even for someone like me who is already creating my own blends, Real Food Blends has it's time and place. This past weekend, in preparation for an overnight trip to visit family, I packed up two days of blended meals for Isaac and was counting on the fridge in the hotel room to be cold enough for his food, and it wasn't. I had to dump all of that food I'd prepared for Isaac. Thankfully I always travel with formula, so I had that on hand, but I wish I'd had Real Food Blends instead. If you are already used to blending your own meals, that's great, and I know that Julie is not trying to use her company to replace the work you are already doing at home. What she is trying to do, is provide convenience for traveling or hospital stays.
Please also take a moment to read an adult tubie's review of Real Food Blends. Not only does he endorse this product, but he also shares what it feels like to live on a formula diet. Most children with special needs are unable to verbalize how food makes them feel. I have to observe Isaac's mood, bowel movements, sleep and energy levels in order to know anything about how what he eats is making him feel. It really is amazing what a difference in diet can do for a person, especially someone who is already battling a host of medical issues. It seems that in cases such as these, medical professionals should be more willing and open to the clear benefit of a healthy diet. Now that Real Food Blends is on the market, I think it will help more parents begin the conversation with dietitians and physicians in an effort to move from formula to whole foods for their loved ones who depend on enteral nutrition.
Links:
Julie Bombacino's story (founder and CEO, Real Food Blends)
Product Endorsement: The Blog of the Traveling Tubie
Nutrition Facts, Real Food Blends
To order Real Food Blends click here!
Showing posts with label tube feedings. Show all posts
Showing posts with label tube feedings. Show all posts
Tuesday, March 4, 2014
Sunday, May 19, 2013
BRAT (the diet, not the unruly child)
A week ago, perfectly timed with Mother's Day, Isaac started throwing up. We braced ourselves for the stomach bug to take over our lives for the next week or two, as Walter and I assumed we'd all drop like flies--on the bathroom floor. We took our preparation seriously, and thankfully, it wasn't needed since Isaac was the only one who got sick. As a result, my house was really clean. It isn't anymore, since Isaac spent his recovery days screaming, and I spent his recovery days telling him I had to go potty (frequently) so that I could shut the bathroom and pretend I was alone for three minutes. Tuesday night Walter said, "I really can't wait for Isaac to get back to his old self. Well, not really his old self, since I try to forget the past two and a half years, but his new self, as of three months ago." We love both his old and new self, just his new self a tad more.
Isabella actually wanted to get sick, because she knew she would then be allowed to drink Gatorade. I tried to impress upon her that the benefit of drinking Gatorade does not outweigh the amount of time she would spend feeling miserable. In the end, I let her have some Gatorade so she would stop willing the stomach bug to descend upon her.
If you've been reading this blog for any length of time, I'm sure you've come across the fact that Isaac has a feeding tube--a mini button (not a Mic-key, although they are practically the same) g-tube, in case you want specifics. Now, there are some benefits to this: he doesn't complain about what I cook for meals, and I don't have to pin down a screaming child and pry open his mouth for a teaspoon of Tylenol--nope, I just shove it in the tube. Doesn't that sound fabulous?
It does. Aside from the major fact that my three year can't eat with his mouth.
Pretty much everyone who knows anything about or deals with a feeding tube, assumes the adult/child with the feeding tube, is on formula. This is usually an accurate assumption. Before the tube is placed, a plan is set up with the GI doctor about what sort of enteral nutrition that person will receive, and unless there are other medical issues that require more specialized formula, you get Pediasure. Plain and simple, right? The medical supply company delivers your Pediasure to your door, and you are on your way to "complete nutrition"...or something like that.
****Disclaimer: First of all, I'm not a doctor, even though I like to think I'm Isaac's doctor, but I'm not going to pretend to be your child's doctor or assess your needs. Secondly, I have an opinion about nutrition, you may not agree, that's cool. I like to agree to disagree with lots of people, and you may be one of them--we can still be friends. Thirdly, formula is very essential to keeping many adults and children alive, and for that, I fully appreciate the benefits of formula and do not judge its use. We do use formula for Isaac. He is on a fifty-fifty blended diet/formula diet (Organic PediaSmart).
Anyway, back to the stomach bug and our Walking Puke Bomb, as Walter lovingly nicknamed Isaac. We had some Pedialyte on hand from Isaac's last surgery, so he was strictly on Pedialyte for about twenty-four hours, then he was begging to eat, and I think he was truly hungry, although we really don't know if he actually feels hunger or relief of hunger because he can't tell us. I can literally be holding him and giving him a syringe of yogurt, and he's screaming that he wants to eat--dude, you ARE eating! That's where this whole lack of communication/comprehension/I have a kids with special needs comes in to play, and can become very frustrating.
So, I'd given him a slow feed of formula, and he really did perk up, and started to get some energy back, until later that night when his whole body practically exploded vomit all over my body. It was pretty spectacular, if you can think of volcanic vomit in a spectacular way. I told Sarah it was all my fault that he threw up again, and he shouldn't have had formula...The Blame Game--it's super fun and the mom ALWAYS wins, and I love to win so I'm really good at it!
Since Monday, he's had eight ounces of formula. I haven't been starving him, I'm just severely cutting back on his formula intake, not that that is what gave him the stomach bug in the first place. He just had some sort of virus that was completely unrelated to food or formula. Tuesday, I replaced Pedialyte and formula, with coconut water and rice cooked in chicken stock. Then added applesauce to the rice, and gradually worked up to yogurt in the blend in an attempt to replace the good bacteria in his gut. The BRAT diet for a tubie--it can be done. The last few days his blends have been back to normal. On any given day, his blend may include (not all at once): whole milk, almond milk, coconut milk, chicken stock, whatever we have dinner, carrots, spinach, lettuce, turkey, yogurt, kefir, almond meal, almonds, flax meal, avocado oil, avocado, mango, eggs, celery, rice, oatmeal, our leftovers that we're tired of eating, ground beef, peanut butter, almond butter, honey, etc, etc.
If you want to know more about creating a blended diet for your tubie, there is a blenderized diet facebook page, web-sites where parents share their blends along with calorie counts, and you may want to look into getting the book, Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets by Eric Aadhaar O'Gorman.
Isaac does not have any food allergies, so I don't have to think twice about what I throw in a blend. Your situation may be different. If you're just starting out, you may need to follow the typical "first foods" as you would with a typical six or nine month old. Once you get the hang of it and have a rough estimate of what food combinations equal the necessary caloric intake for a day, then you are on your way to limiting the amount of formula you need. Because of Isaac's growth issues, he has to receive 1300 calories in 24-hrs. We try to fit all of that in while he is awake because I can't stand over-night feeds--inevitably the medicine port pops open and feeds the bed with stomach contents (fun!), or I just can't sleep because I'm waiting for that lovely beep from the pump.
Some things to keep in mind:
-You need a high powered blender for a blended diet.
-Avocado makes blends annoyingly thick.
-Have a strainer on hand. Some people say they don't have to strain their blends. They must have magical powers or more tolerance for a beeping clogged pump, or they do bolus feeds, which would not require the use of the pump. Isaac is very attached to his pump, and doesn't believe that we are feeding him unless he is hooked up to the pump.
-I should say, consult with your doctor before doing this. Nutritionists tend to live in the dark ages, so don't be surprised if they are against a blended diet. They like numbers, so give them numbers. Write down everything you have tried, or considered putting a blend, and they can whip out their little calculator and go to town, and then they'll look up from their numbers, and say, "Just make sure you give him enough water." Done.
-I should also say, I did not consult with anyone before doing this. When I did finally tell his GI doctor, she said, "anything that makes him look this good, I'm happy with". I love her, did you know that? I knew from the start, I didn't want my child stuck on formula, and I certainly didn't want a nutritionist to tell me that, "formula ensures that Isaac is getting a complete nutrition and is meeting all of calorie, fat, and protein needs." When I have heard that (because as you can tell nutritionists and I don't get along), my response was: "So you're telling me, every two or three year old, or eight year old should be on formula all day long, every day? Do you have a child? Would you be satisfied opening a can of Pediasure and feeding that to them after you get home today--and then before bed, and then for breakfast tomorrow morning." Hmmmm...that's what I thought.
-Yes, it does take more work, and it's okay to grab your can of PediaSmart, or Pediasure, or whatever you have on hand, because some days are just too darn complicated.
-During warmer weather, you will need to keep an ice pack in your tubie's feeding bag.
Unfortunately, the whole blended diet vs. formula debate for enteral nutrition becomes this heated thing that is very similar to breastfeeding vs. formula for an infant. Though I firmly believe that breast milk is best for babies, I gained an understanding through Isaac, that there is a time and a place for formula. I didn't have that appreciation a few years ago, and I do believe I am better person for being able to accept the use of formula. Your child's medical needs may be so involved that you cannot possibly think of adding one more thing to your daily routine. I get that, and that is okay, because formula is made for those situations. You have to do what you believe is right for your family and your situation. I choose to give Isaac sixteen ounces of formula a day, and sixteen ounces of blended food--that's what I've found is doable for me, though this week I have almost completely eliminated formula from his diet, and will try to maintain that.
We did find that once Isaac began receiving whole food through the tube, there was a marked improvement in his energy, development, skin tone, and overall appearance, and for that reason, I cannot ignore the benefit of him receiving a blended diet. Also, because I work to provide healthy foods and meals for my family, I get personal fulfillment knowing that I am feeding Isaac those prepared meals as well. Learning that he was going to have a feeding tube was extremely disheartening for me, and I compensate for that in providing him with beef stew if we have beef stew, or whatever meal that I've worked to prepare for the rest of us.
I'm still learning--if you have a child on a blended diet, what works for you?
Isabella actually wanted to get sick, because she knew she would then be allowed to drink Gatorade. I tried to impress upon her that the benefit of drinking Gatorade does not outweigh the amount of time she would spend feeling miserable. In the end, I let her have some Gatorade so she would stop willing the stomach bug to descend upon her.
If you've been reading this blog for any length of time, I'm sure you've come across the fact that Isaac has a feeding tube--a mini button (not a Mic-key, although they are practically the same) g-tube, in case you want specifics. Now, there are some benefits to this: he doesn't complain about what I cook for meals, and I don't have to pin down a screaming child and pry open his mouth for a teaspoon of Tylenol--nope, I just shove it in the tube. Doesn't that sound fabulous?
It does. Aside from the major fact that my three year can't eat with his mouth.
Pretty much everyone who knows anything about or deals with a feeding tube, assumes the adult/child with the feeding tube, is on formula. This is usually an accurate assumption. Before the tube is placed, a plan is set up with the GI doctor about what sort of enteral nutrition that person will receive, and unless there are other medical issues that require more specialized formula, you get Pediasure. Plain and simple, right? The medical supply company delivers your Pediasure to your door, and you are on your way to "complete nutrition"...or something like that.
****Disclaimer: First of all, I'm not a doctor, even though I like to think I'm Isaac's doctor, but I'm not going to pretend to be your child's doctor or assess your needs. Secondly, I have an opinion about nutrition, you may not agree, that's cool. I like to agree to disagree with lots of people, and you may be one of them--we can still be friends. Thirdly, formula is very essential to keeping many adults and children alive, and for that, I fully appreciate the benefits of formula and do not judge its use. We do use formula for Isaac. He is on a fifty-fifty blended diet/formula diet (Organic PediaSmart).
Anyway, back to the stomach bug and our Walking Puke Bomb, as Walter lovingly nicknamed Isaac. We had some Pedialyte on hand from Isaac's last surgery, so he was strictly on Pedialyte for about twenty-four hours, then he was begging to eat, and I think he was truly hungry, although we really don't know if he actually feels hunger or relief of hunger because he can't tell us. I can literally be holding him and giving him a syringe of yogurt, and he's screaming that he wants to eat--dude, you ARE eating! That's where this whole lack of communication/comprehension/I have a kids with special needs comes in to play, and can become very frustrating.
So, I'd given him a slow feed of formula, and he really did perk up, and started to get some energy back, until later that night when his whole body practically exploded vomit all over my body. It was pretty spectacular, if you can think of volcanic vomit in a spectacular way. I told Sarah it was all my fault that he threw up again, and he shouldn't have had formula...The Blame Game--it's super fun and the mom ALWAYS wins, and I love to win so I'm really good at it!
Since Monday, he's had eight ounces of formula. I haven't been starving him, I'm just severely cutting back on his formula intake, not that that is what gave him the stomach bug in the first place. He just had some sort of virus that was completely unrelated to food or formula. Tuesday, I replaced Pedialyte and formula, with coconut water and rice cooked in chicken stock. Then added applesauce to the rice, and gradually worked up to yogurt in the blend in an attempt to replace the good bacteria in his gut. The BRAT diet for a tubie--it can be done. The last few days his blends have been back to normal. On any given day, his blend may include (not all at once): whole milk, almond milk, coconut milk, chicken stock, whatever we have dinner, carrots, spinach, lettuce, turkey, yogurt, kefir, almond meal, almonds, flax meal, avocado oil, avocado, mango, eggs, celery, rice, oatmeal, our leftovers that we're tired of eating, ground beef, peanut butter, almond butter, honey, etc, etc.
If you want to know more about creating a blended diet for your tubie, there is a blenderized diet facebook page, web-sites where parents share their blends along with calorie counts, and you may want to look into getting the book, Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets by Eric Aadhaar O'Gorman.
Isaac does not have any food allergies, so I don't have to think twice about what I throw in a blend. Your situation may be different. If you're just starting out, you may need to follow the typical "first foods" as you would with a typical six or nine month old. Once you get the hang of it and have a rough estimate of what food combinations equal the necessary caloric intake for a day, then you are on your way to limiting the amount of formula you need. Because of Isaac's growth issues, he has to receive 1300 calories in 24-hrs. We try to fit all of that in while he is awake because I can't stand over-night feeds--inevitably the medicine port pops open and feeds the bed with stomach contents (fun!), or I just can't sleep because I'm waiting for that lovely beep from the pump.
Some things to keep in mind:
-You need a high powered blender for a blended diet.
-Avocado makes blends annoyingly thick.
-Have a strainer on hand. Some people say they don't have to strain their blends. They must have magical powers or more tolerance for a beeping clogged pump, or they do bolus feeds, which would not require the use of the pump. Isaac is very attached to his pump, and doesn't believe that we are feeding him unless he is hooked up to the pump.
-I should say, consult with your doctor before doing this. Nutritionists tend to live in the dark ages, so don't be surprised if they are against a blended diet. They like numbers, so give them numbers. Write down everything you have tried, or considered putting a blend, and they can whip out their little calculator and go to town, and then they'll look up from their numbers, and say, "Just make sure you give him enough water." Done.
-I should also say, I did not consult with anyone before doing this. When I did finally tell his GI doctor, she said, "anything that makes him look this good, I'm happy with". I love her, did you know that? I knew from the start, I didn't want my child stuck on formula, and I certainly didn't want a nutritionist to tell me that, "formula ensures that Isaac is getting a complete nutrition and is meeting all of calorie, fat, and protein needs." When I have heard that (because as you can tell nutritionists and I don't get along), my response was: "So you're telling me, every two or three year old, or eight year old should be on formula all day long, every day? Do you have a child? Would you be satisfied opening a can of Pediasure and feeding that to them after you get home today--and then before bed, and then for breakfast tomorrow morning." Hmmmm...that's what I thought.
-Yes, it does take more work, and it's okay to grab your can of PediaSmart, or Pediasure, or whatever you have on hand, because some days are just too darn complicated.
-During warmer weather, you will need to keep an ice pack in your tubie's feeding bag.
Unfortunately, the whole blended diet vs. formula debate for enteral nutrition becomes this heated thing that is very similar to breastfeeding vs. formula for an infant. Though I firmly believe that breast milk is best for babies, I gained an understanding through Isaac, that there is a time and a place for formula. I didn't have that appreciation a few years ago, and I do believe I am better person for being able to accept the use of formula. Your child's medical needs may be so involved that you cannot possibly think of adding one more thing to your daily routine. I get that, and that is okay, because formula is made for those situations. You have to do what you believe is right for your family and your situation. I choose to give Isaac sixteen ounces of formula a day, and sixteen ounces of blended food--that's what I've found is doable for me, though this week I have almost completely eliminated formula from his diet, and will try to maintain that.
We did find that once Isaac began receiving whole food through the tube, there was a marked improvement in his energy, development, skin tone, and overall appearance, and for that reason, I cannot ignore the benefit of him receiving a blended diet. Also, because I work to provide healthy foods and meals for my family, I get personal fulfillment knowing that I am feeding Isaac those prepared meals as well. Learning that he was going to have a feeding tube was extremely disheartening for me, and I compensate for that in providing him with beef stew if we have beef stew, or whatever meal that I've worked to prepare for the rest of us.
I'm still learning--if you have a child on a blended diet, what works for you?
Monday, February 25, 2013
Singing, Rainbows, and a Fairy
Yesterday evening Isabella performed with a group of other kids her age, during a church family night of worship. About half way through the event, I said to Walter, "This is amazing, a year ago, or even six months ago, Isaac wouldn't have made it through something like this." We've come so far. Six months ago, he would have been screaming inconsolably--unable to tolerate the crowd, and noise. Yesterday though, he made it until the end. I could tell he was shut down for most it, but I'm so proud of him for holding out and tolerating a challenging situation for him.
And what about Isabella? She was great, just like all of the other little kids who were singing their little hearts out. Her bravery constantly amazes me. She walked right up on stage like it was nobody's business. I don't know if I could have done that.
Gearing up for the show...
Even though he's outgrown it, the bouncy seat still comes in handy. In case you're curious, that's butternut squash soup going through the tube. 
When I take out my camera, he says, "eeee" (cheese)...
We had a sunny day today, and as usual Isabella and Stella went out to play. I found a rainbow when I went out to get the mail.
And what about Isabella? She was great, just like all of the other little kids who were singing their little hearts out. Her bravery constantly amazes me. She walked right up on stage like it was nobody's business. I don't know if I could have done that.
Gearing up for the show...
Even though he's outgrown it, the bouncy seat still comes in handy. In case you're curious, that's butternut squash soup going through the tube. 
Isaac helped mix the spices for our chili. He was pretending that the Motrin bottle was his salt grinder.
When I take out my camera, he says, "eeee" (cheese)...
Exhausting morning at Sunday School.
Fairy Moments:
We had a sunny day today, and as usual Isabella and Stella went out to play. I found a rainbow when I went out to get the mail.
Thursday, February 21, 2013
Life
Some notable happenings from the past few days:
1. Isabella announced that she will no longer be called, Isabella and is instead, you guess it, Bella. Since I have been itching to join the ranks of the association, Mean Moms of America, I flat out refuse to call her Bella. Later I went into her room and saw that she removed the I,S,A from the letters hanging on her wall.
2."Mommy, I really want a bunny. Can we pleeeease get a bunny?"
"No, we are not getting a bunny."
"But I like bunnies way more than dogs."
"Stella, did you hear that? She says she likes bunnies more than dogs! You just made Stella cry."
"But I really do! I don't like dogs anymore."
"Look at Stella, she is so sad that you said that."
And then commenced the crying because I would not get a bunny for her.
3. Monday I had a pimple on my forehead that happened to be the size of a third eyeball. While I like my children to believe that I can see everything they do, I would have passed on this pimple. Apparently it was incredibly distracting to Isabella while we were working on her math lesson:
"What is that thing on your face?"
"It's a pimple, don't worry about it."
"Well, why did you get it?"
"I don't know--I'm trying to pass as a teenager." I guess that was an acceptable answer until I was explaining a math concept and noticed she wouldn't take her eyes off my pimple.
4. Tuesday the kids had dentist appointments. I've been dreading Isaac's appointment since the screams that come from him during a cleaning can probably be heard in the next building. I was all geared up. Emotionally prepared for torture time, and physically prepared since I planned to remove his shoes after the extreme kicking of the last appointment. Isaac woke up crabby and I was disappointed since I'd really hoped for a good mood. I held him most of the morning until he fell asleep for an unusually early nap. I didn't think much of it since he goes to bed late, doesn't sleep well, and then wakes up early, a 9:30 a.m. nap seemed reasonable.
We got to the dentist and I could tell something was off with Isaac. I thought he would perk up when he saw the video game room and he tried to walk into the room, fell down, stood up, fell down, was screaming...they wanted me to fill out paperwork. Isaac was still screaming, and now shaking uncontrollably. I tried giving him the iPad since that usually cures a bad mood. He couldn't even hold it. Now Isabella was asking for the iPad. I snapped at her and told her to into the playroom--something was wrong with Isaac. I thought maybe it was a blood sugar thing, so I ran out to the car to get formula and a syringe. The receptionist gave me a cup...Isaac was still screaming, and shaking. They came to take Isabella back for her appointment and I couldn't decide if we should stay or go, I just told them that I needed a fork to mix that stupid formula. So there we were, screaming child, me mixing formula, Isabella upset that she may miss her long anticipated dentist appointment, then I was syringing up formula, and giving Isaac a quick two ounces. By that point I surely looked crazy. I mean, who doesn't when they are holding a lethal syringe (60cc).
I told Isabella that she could go back for her cleaning and maybe Isaac would feel better after having some formula. Meanwhile, Isaac kept pointing to the game room, but he wouldn't stand up, even with my help. I pulled a chair over and sat him in front of screen. He couldn't hold the controller, and then he started dozing off. Isaac, dozing off in front of a Lego video game definitely means something is wrong.
Well, fast forward a little bit, the dentist came out to the waiting room to have a look at Isaac. At this point, Isaac had stopped crying and was basically slouched over and his eyes kept rolling back and he kept drifting to sleep. We decided he should go to the ER, so I dropped Isabella off with my mom, and by the time we got to the ER he had a fever of 103.3, which I know isn't crazy high for kids, but he didn't have a fever until we left the dentist's office, and his symptoms were more concerning than anything else.
He had some Motrin and then started to perk up a bit. They couldn't find anything that was wrong with him, he didn't have a cough, his nose wasn't runny, his g-tube looked okay, ears were good, flu test was negative...and by that point he was saying, "bee bee" (beep beep) so that I'd move out of the way so that he could watch TV. We were discharged, and after a nap and a tube feeding, he was back to normal and wrestling with Isabella. He has not had a hint of a fever since 2:00 p.m. on Tuesday. It was all incredibly weird, and scary at the beginning since he has never acted like that or had a fever. We are thankful he is okay. It is so challenging with him since he is unable to tell us what is wrong. We've tried teaching feelings and attempt to help him pinpoint an area of discomfort, but it's virtually impossible since he does not have the verbal ability to tell us if he isn't feeling well. We've had glimpses of progress in this area, for example, when he was able to touch his g-tube and say, "ow", so we'll keep working on it.
5. I have heard more about silly putty since Sunday, than I would ever care to hear.
6. Isabella very nonchalantly told me that when I die she will not forget about me and will think about me all the time.
7. At dinner, Walter was mentioning that his annual review is this week, and we basically explained to Isabella that it is a grading system for people who work...ideally you want an A+. "Well, what if you get an F." "That probably means you're fired." "And then you have to go work at a pizza place." Anything is possible.
8. My so called facebook "friends" ruined the finale of Downton Abbey for me. Note to self: do not log on to social media outlets before having a chance to watch season finales.
Getting ready to show Pirate Legos to Opa
The result of watching many home improvement shows with Daddy: Measuring vents...
Carrot and orange golf
Isaac was sure this remote would control his Playmobile race car
Checking for the 'on' switch
Walter's Aunt teaches Suzuki violin, but lives too far away for us to take lessons with her. This was an impromptu Sunday lesson...
--Sierra
1. Isabella announced that she will no longer be called, Isabella and is instead, you guess it, Bella. Since I have been itching to join the ranks of the association, Mean Moms of America, I flat out refuse to call her Bella. Later I went into her room and saw that she removed the I,S,A from the letters hanging on her wall.
2."Mommy, I really want a bunny. Can we pleeeease get a bunny?"
"No, we are not getting a bunny."
"But I like bunnies way more than dogs."
"Stella, did you hear that? She says she likes bunnies more than dogs! You just made Stella cry."
"But I really do! I don't like dogs anymore."
"Look at Stella, she is so sad that you said that."
And then commenced the crying because I would not get a bunny for her.
3. Monday I had a pimple on my forehead that happened to be the size of a third eyeball. While I like my children to believe that I can see everything they do, I would have passed on this pimple. Apparently it was incredibly distracting to Isabella while we were working on her math lesson:
"What is that thing on your face?"
"It's a pimple, don't worry about it."
"Well, why did you get it?"
"I don't know--I'm trying to pass as a teenager." I guess that was an acceptable answer until I was explaining a math concept and noticed she wouldn't take her eyes off my pimple.
4. Tuesday the kids had dentist appointments. I've been dreading Isaac's appointment since the screams that come from him during a cleaning can probably be heard in the next building. I was all geared up. Emotionally prepared for torture time, and physically prepared since I planned to remove his shoes after the extreme kicking of the last appointment. Isaac woke up crabby and I was disappointed since I'd really hoped for a good mood. I held him most of the morning until he fell asleep for an unusually early nap. I didn't think much of it since he goes to bed late, doesn't sleep well, and then wakes up early, a 9:30 a.m. nap seemed reasonable.
We got to the dentist and I could tell something was off with Isaac. I thought he would perk up when he saw the video game room and he tried to walk into the room, fell down, stood up, fell down, was screaming...they wanted me to fill out paperwork. Isaac was still screaming, and now shaking uncontrollably. I tried giving him the iPad since that usually cures a bad mood. He couldn't even hold it. Now Isabella was asking for the iPad. I snapped at her and told her to into the playroom--something was wrong with Isaac. I thought maybe it was a blood sugar thing, so I ran out to the car to get formula and a syringe. The receptionist gave me a cup...Isaac was still screaming, and shaking. They came to take Isabella back for her appointment and I couldn't decide if we should stay or go, I just told them that I needed a fork to mix that stupid formula. So there we were, screaming child, me mixing formula, Isabella upset that she may miss her long anticipated dentist appointment, then I was syringing up formula, and giving Isaac a quick two ounces. By that point I surely looked crazy. I mean, who doesn't when they are holding a lethal syringe (60cc).
I told Isabella that she could go back for her cleaning and maybe Isaac would feel better after having some formula. Meanwhile, Isaac kept pointing to the game room, but he wouldn't stand up, even with my help. I pulled a chair over and sat him in front of screen. He couldn't hold the controller, and then he started dozing off. Isaac, dozing off in front of a Lego video game definitely means something is wrong.
Well, fast forward a little bit, the dentist came out to the waiting room to have a look at Isaac. At this point, Isaac had stopped crying and was basically slouched over and his eyes kept rolling back and he kept drifting to sleep. We decided he should go to the ER, so I dropped Isabella off with my mom, and by the time we got to the ER he had a fever of 103.3, which I know isn't crazy high for kids, but he didn't have a fever until we left the dentist's office, and his symptoms were more concerning than anything else.
He had some Motrin and then started to perk up a bit. They couldn't find anything that was wrong with him, he didn't have a cough, his nose wasn't runny, his g-tube looked okay, ears were good, flu test was negative...and by that point he was saying, "bee bee" (beep beep) so that I'd move out of the way so that he could watch TV. We were discharged, and after a nap and a tube feeding, he was back to normal and wrestling with Isabella. He has not had a hint of a fever since 2:00 p.m. on Tuesday. It was all incredibly weird, and scary at the beginning since he has never acted like that or had a fever. We are thankful he is okay. It is so challenging with him since he is unable to tell us what is wrong. We've tried teaching feelings and attempt to help him pinpoint an area of discomfort, but it's virtually impossible since he does not have the verbal ability to tell us if he isn't feeling well. We've had glimpses of progress in this area, for example, when he was able to touch his g-tube and say, "ow", so we'll keep working on it.
5. I have heard more about silly putty since Sunday, than I would ever care to hear.
6. Isabella very nonchalantly told me that when I die she will not forget about me and will think about me all the time.
7. At dinner, Walter was mentioning that his annual review is this week, and we basically explained to Isabella that it is a grading system for people who work...ideally you want an A+. "Well, what if you get an F." "That probably means you're fired." "And then you have to go work at a pizza place." Anything is possible.
8. My so called facebook "friends" ruined the finale of Downton Abbey for me. Note to self: do not log on to social media outlets before having a chance to watch season finales.
Getting ready to show Pirate Legos to Opa
The result of watching many home improvement shows with Daddy: Measuring vents...
Carrot and orange golf
Isaac was sure this remote would control his Playmobile race car
Checking for the 'on' switch
Walter's Aunt teaches Suzuki violin, but lives too far away for us to take lessons with her. This was an impromptu Sunday lesson...
--Sierra
Friday, February 15, 2013
me go mo wi da
Isaac: (in a high pitched voice) Hoooo Hoooo Hoooo
Isabella: Isaac, please stop making the same sound over and over again!
Isaac: Hooo Hooo Hooo
Isabella: Isaac! Seriously, that sound is annoying!
Me: Isabella, it's okay, just try to ignore him. Isaac can you make a different sound? Can you whisper?
Isaac: Hooo Hooo Hooo (He's an owl, that never stops hooting)
Isabella: Isaac! You're giving me a HEADACHE!
and then there's been a lot of this:
Isaac: No, no, no, noooo, ow, ow, ow!
Me: Isabella, I've already told you not to talk to, look at, or touch Isaac.
Yep.
Let the sibling games begin. Isaac is already extra sensitive to people looking at him when he doesn't want them to. I mean, I get it, I tend to be on the anti-social side at times, but is it really necessary to say, "ow" when people look at you? And the repetitive noises, that happens all the time. If he isn't hooting, he's growling, and if he isn't growling, he's making some other high pitched noise. Our meals are very entertaining, and quite loud. We try to encourage a variety of noises so that we don't have to hear the same one, but Isaac is a very stubborn person, and if he wants to growl for ten minutes straight, he's going to growl. How he doesn't end up with sore throat, I have no idea.
Other than growling and hooting, Isaac is making very good progress with making word approximations. You would have no idea what he was saying, but I've gotten pretty good at it. For example:
Isaac: me go mo wi da!
Me: You want to play mario, on the wii, with da?
Isaac: Ya!
Isaac: buh woooey go!
Me: Buzz and Woody and are in a car?
Isaac: Ya!
Valentine Sweat Shop
Isabella is making some wonderful progress with reading and math. I am constantly amazed that her brain can absorb so much new information and then spit it back out. I often wonder if I'm pushing her too hard, or teaching her too many new things at once, but she is getting it all, and it's really fun to be a part of this learning process.
Isaac helping unpack his medical supplies.
Have a wonderful weekend!
Sierra
Friday, January 11, 2013
Bribery
If you don't watch the show Parenthood, you should. It is one of the best shows that television has to offer, in my opinion. Person of Interest is another favorite of mine. Jim Caviezel just so happens to be my virtual boyfriend--don't worry, Walter knows all about this. It's no secret that Walter has a thing for Rachel Bilson, so it's all good.
There's a story-line in Parenthood about a woman named Julia and her husband, who have adopted an older child, and things aren't going well. So, she headed over to Christina's house to ask for some parenting advice. For anyone who hasn't watched the show, Christina's son, Max, has autism, and they are used to dealing with a challenging child and angry outbursts. Julia, who was feeling at a loss with their newly adopted son, asked what Christina's trick is with Max. Bribery. And she pulled out a giant container of candy and told her, plain and simple, if he does this thing, he gets this many pieces of candy...that thing, and a few more pieces of candy.
There you have it. The secret of parenting.
When I was pregnant with Isaac, and couldn't get Isabella to take a nap, I bribed her with M&Ms. Every day I reminded her, "if you take a nap, you may have two M&Ms when you wake up!" My mom was like, "seriously, she only gets to have two?" In a house without candy, two M&Ms to a two year old was like hitting the jackpot.
Remembering that, makes me wish I could bribe Isaac with some candy. It doesn't work so well to promise to blend it up and push it through his tube. Alas.
What I have discovered though, is that the iPad, is the perfect tool for bribery. This was all very exciting for me since we're really struggling to get Isaac to wear his braces. When we put his braces on, he considers himself immobile, which doesn't help me at all. I did manage to get him to walk across the living-room while holding the iPad just out of reach. And later, he even walked from the living-room to the kitchen all of his own volition. He was quite proud of himself, until he looked down, and I watched as the pride washed from his face, and he remembered how truly terrible it is to wear braces, and started crying.
Isabella is in the process of learning many sight words. She picks up on them pretty quickly, but I thought it might be fun to have a sight word scramble. I said the word, and she erased the correct one from the board. She got it right every time.
"Mommy, you have to be very careful with ice. It breaks very easily and then I would have to wait a long, long time to make more ice plates."
While in the car this week, she told me I'm a really amazing singer. Just so you know, I'm not, but all that matters is that my favorite little girl, thinks that I am.
Have a wonderful weekend.
Sierra
There's a story-line in Parenthood about a woman named Julia and her husband, who have adopted an older child, and things aren't going well. So, she headed over to Christina's house to ask for some parenting advice. For anyone who hasn't watched the show, Christina's son, Max, has autism, and they are used to dealing with a challenging child and angry outbursts. Julia, who was feeling at a loss with their newly adopted son, asked what Christina's trick is with Max. Bribery. And she pulled out a giant container of candy and told her, plain and simple, if he does this thing, he gets this many pieces of candy...that thing, and a few more pieces of candy.
There you have it. The secret of parenting.
When I was pregnant with Isaac, and couldn't get Isabella to take a nap, I bribed her with M&Ms. Every day I reminded her, "if you take a nap, you may have two M&Ms when you wake up!" My mom was like, "seriously, she only gets to have two?" In a house without candy, two M&Ms to a two year old was like hitting the jackpot.
Remembering that, makes me wish I could bribe Isaac with some candy. It doesn't work so well to promise to blend it up and push it through his tube. Alas.
What I have discovered though, is that the iPad, is the perfect tool for bribery. This was all very exciting for me since we're really struggling to get Isaac to wear his braces. When we put his braces on, he considers himself immobile, which doesn't help me at all. I did manage to get him to walk across the living-room while holding the iPad just out of reach. And later, he even walked from the living-room to the kitchen all of his own volition. He was quite proud of himself, until he looked down, and I watched as the pride washed from his face, and he remembered how truly terrible it is to wear braces, and started crying.
Isabella is in the process of learning many sight words. She picks up on them pretty quickly, but I thought it might be fun to have a sight word scramble. I said the word, and she erased the correct one from the board. She got it right every time.
Here she is, explaining to me how she set out buckets of water so that the tops would freeze and she would have ice plates.
"Mommy, you have to be very careful with ice. It breaks very easily and then I would have to wait a long, long time to make more ice plates."
While in the car this week, she told me I'm a really amazing singer. Just so you know, I'm not, but all that matters is that my favorite little girl, thinks that I am.
Sierra
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