Inniswood Gardens

We've had some growing health concerns regarding Isaac, so the last couple weeks have been very hard for us. Right now we are waiting to have some testing done on Tuesday, and then we will have a better idea of what we are dealing with. The concern is that he has developed gastroparesis, which is basically a condition where the stomach has a hard time emptying its contents. This causes stomach discomfort, vomiting, and diarrhea, among other things due to a decrease in fluids. It is a miracle we weren't in the hospital over the weekend. Times like these make us grateful for the g-tube because we are able to control what goes in despite what unfortunately, comes out. After phone conversations with the doctor, a visit to the doctor, blood work, stool cultures, and a visit to GI just in this week alone, the goal is to maintain hydration and next week work on rebuilding calorie and fat intake, and also have a gastric emptying test on Tuesday. By Sunday night it looked like our little man was disappearing before our eyes, but his energy is beginning to improve and by last night he was able to tolerate his required daily fluid intake. His GI has suggested a blend of almond milk, applesauce, a carbohydrate, and kefir, to work on getting his system back on track. We've had two days now of no vomiting and just pray that continues. 

For now, here are some pictures from the Inniswood Gardens in Westerville, Ohio. We had the chance a few weeks ago to visit my cousin who was in town from Florida. Due to my inability to sit still, I dragged everyone to three different parks that day. Inniswood won out as the favorite, followed by ice-cream, which was Isabella's favorite. 

Venturing away from the stroller and considering the rope bridge. Don't get all excited, it didn't happen--he started screaming right after I took that second picture.

Isaac was fairly unhappy, so we parked him in place while touring the small secret garden, and pretended he wasn't there. Sometimes, the less we acknowledge his existence, the happier he is. He's a very interesting child.

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?

Walking With Eyes Wide Open

I was sifting through old blog posts to find something I'd written and stumbled across pictures of Isaac's belly before he had his g-tube placed. It made me so emotional to see his perfect baby belly. I really hope that one day, I'll see his belly again without a tube in place.

One time, when Walter and I were babysitting our friend's son, Milo. I changed Milo's diaper, and out of habit, carefully pulled up his onesie to check his g-tube...Milo doesn't have a g-tube. My sister recently pointed out to me that I talk with my hands more than I ever have. She said that I'm signing without even realizing it. This was after I was describing someone to her who usually wears glasses, and in this case, I wasn't even aware that to my cognitively aware and intelligent sister, I held my fingers up to my eyes like a pair of glasses, just in case she didn't understand the word, 'glasses'.

When Isabella was nine months old, I started teaching her a few signs. It's what everyone was doing, and sounded like a good idea. Who wouldn't want ease up the frustration that comes with deciphering your child's grunts and screams? We really only learned a few: more, please, help, thank you. That was pretty much all we needed to get by, and she ended up being verbal at a young age, so the signs were quickly discarded and forgotten.

Every therapist who meets Isaac is instantly impressed with his ability to use sign language. Sign language for us, has been a life saver. At first, I was embarrassed to sign with him in public. I have no idea why. Probably for the same reason I was initially embarrassed for him to have a tube-feed in public. People then pick up on the fact that something about him is different. He otherwise looks like a pretty normal child, aside from his abnormally small stature, but that usually just leads people to believe he is much younger than he actually is.

I don't mind that Isaac is different, or the fact that our lives have completely changed since his birth. I am saddened with the knowledge that he may not have the opportunities that Isabella will have, and also that Isabella is experiencing a vastly different sibling situation than we'd ever imagined. Either way, we are stronger from our experiences, and Isabella is an incredibly compassionate sibling, who has an understanding of g-tubes, tube feedings, how to turn on and off his pump, OT, PT, SLT, and feeding therapy, that many five year old kids don't have. She is his greatest cheerleader, and my hope, is that she will forever embrace those with special needs, and be aware of the unique challenges people face and not be afraid of them.

It's amazing how life takes you down paths you never thought existed. Our eyes are opened, and we are better because of it.

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As the finale of our two-week family stay-cation (that is seriously the dumbest word, but I'll use it anyway), we went to COSI. Isabella asked from start to finish, when we were going to Grandma's house. It didn't matter which grandma, she just wanted to know when we were leaving COSI, which cost a fair amount of money, to go to one of two grandma's houses, that were free. Lesson learned: just go to grandma's house.

Isaac playing with the iPad during a feeding.

And a few pictures of Isaac in his random sleeping positions...

The iPad has entered the building

The week of Christmas, Isaac was crabby on and off (nothing out of the ordinary) and would often hold his g-tube site and say "ow" repeatedly. This was something new, but he also says "ow" when we walk toward him with his jacket in hand, or his shoes, or a diaper, so we thought, maybe he's just being two and a half. Well, after a couple sleepless nights, I finally called his GI doctor and managed to take him in for a last minute appointment. The kid was right, something was up with his g-tube (which became more obvious to us when the site started getting red) and he's been on antibiotics for a week. We were lucky we didn't end up in the hospital on IV antibiotics, and also that since having his tube for over a year, this is his first infection. Thankfully, he is doing really well, and I haven't heard a tummy related "ow" in several days. It is a big step for him developmentally, to be aware of pain and the location of pain, so we're thankful he has reached this milestone, and also that he was able to alert us that there was a problem.

Walter has been off from work for two weeks and we have been enjoying every minute of it (except for that brief span of an afternoon where he was mad at me for letting the kids play with too many toys at one time (what?) and not organizing the toys properly. He later apologized and I said, "I accept your apology, and forgive you for being crazy." Isn't marriage grand?). We have greatly enjoyed our two-week at-home vacation, or, if I want to be trendy, our stay-cation.

We were given Isaac's iPad on Friday. I already broke my rule and put games on it. In my defense, that Talking Tom Cat somehow gets Isaac to make more sounds than he ever would otherwise. Aside from that, the whole iPad thing is stressing me out. The goal is for him to use it to expand his potential for communication. This means that I have to take a million pictures and establish folders, and record my voice for all of the objects, and then have it handy at the appropriate moment. Easy, right? I'm struggling to see how this device will fit into our every day life, for its intended use, and frankly, sign language and our deciphering of his sounds within context, seems so much easier. I really want to hear from a mom who has implemented an AAC into their life...how long did it take for you to set the whole thing up, how do you keep it handy for your toddler, etc. Share a message or e-mail me if you are a parent and have used an iPad with your child for communication.

Be the advocate your child deserves.

When I was in fifth grade, I began the year with a team of really bad teachers. In fact, when I stumbled on a multiplication fact, in front of the entire class, my teacher told me I wouldn't "learn math until the cows came home." How disheartening and embarrassing to hear something like that. From then on, I sat through math classes pleading (in my mind) with the teacher not to call on me to answer a question in front of the class. My mom fought to have me removed from that class. I'm sure she met with the teachers and the principals more times than I know about, but ultimately, she told the principal that if I wasn't removed from that team of teachers, she would pull me out of school and home school me for the rest of the year. I was moved to a different team, and the rest of fifth grade went well, or at least as I remember it.

My mom taught us the importance of advocating for your child. I have been tried and tested in this department of parenting since the moment Isaac was born. It's pretty simple. Here is a little person whom you love with all of your heart and soul, who has no voice or power of words with which to express their needs, and you fight for them. You are your child's voice. With that comes great responsibility. If you feel that something is wrong, and the people who need to listen aren't listening, find someone who will! I've been Isaac's voice, and I've been Isabella's at times, but she hasn't required nearly as much fighting for.

When Isaac was placed on my chest for the very first time, we knew nothing other than the fact that his head was misshapen. We had no idea what a roller coaster ride we were in for. Now, I think back to all of the testing he went through. Much of it very uncomfortable. I think of lying on an exam table pleading with him to nurse so that we would make it through whatever test he was enduring. Sweating. I remember sweating, as I held him so many times as he cried and cried at the doctor's office. Most of the tests were to determine why he was so constipated all the time. And every one of them came back normal. Which was great, but trust me, when you're searching, you want to find an answer.

When we did finally find the answer, and found out that this would be something he would carry with him his entire life, it was so hard. But then pretty much everything we'd been through was explained. And I finally knew my mission. That's pretty simple too (in writing at least), do everything possible to give him the chance to succeed. That's my mission. That is the reason we have multiple appointments each week; that is the reason I push him to respond with a sign or a sound; that is the reason why he has to have time-outs just like any other kid; that is the reason I talk to him just like I always talk to Isabella; that is the reason he isn't just on formula 24/7 (more on a blended diet in another post).

I will be very honest with you. If you are the parent of a child with special needs, you can't sit back and watch the show. Nothing will happen if you do that. The services for your child, don't just line up at the door. Ask questions, do your research, talk to other parents, and stay informed. Before you go to an important appointment, spend some time writing down questions, or things you need to share with that particular doctor. Use that time as wisely as you can. My recommendation, make a medical binder with tabs for each physician where you can keep any information given to you by that doctor. Make sure you have each physician's business card taped to the inside of the binder. I also keep a list of Isaac's recent words/sounds, and signs, that way, if anyone asks I'm not sitting there trying to remember everything, I just hand them the paper. If your child is on a blenderized diet and you have an upcoming GI appointment, keep track of what they are getting through the tube for a week (calories, proteins, fats, etc.) that way you can account for their diet. Trust me, people tend to get weird when you choose the road less traveled. Take video clips of your child meeting certain therapy goals, so that you can show what you are working on at home.

Most importantly, be upfront with the doctors in your life. Just tell them, "this is what I feel is important for my child, what do you suggest, and how can we work on this together." When I met with Isaac's new ENT, I told him upfront, I'm not leaving today without scheduling a tonsillectomy. I guess at that time I wasn't really suggesting we work on anything together. But my point is, I knew that was the next step, and look at the vast improvements it has made to have his tonsils out.

Trust me, I'm not trying to say I'm perfect, I've just found a method to this madness that works for us, and I would like to encourage you to do the same for your child.

 Good Morning!

I love her eye lashes.

Stella is wearing her cone again. Don't worry, Grandma, she's fine, just some itchy skin issues going on. As you can see, she is well cared for by her little doctors.

How about a stuffed animal, Stella?

Or two?

"I see you, Charlotte!"

Isabella, reading to Isaac while I finished getting ready for our morning of therapy appointments.

Using an iPad at Speech Therapy.

The idea behind this post came from the most amazing compliment I received from Isaac's feeding therapist. She and I have had differing opinions on many occasions  and I've recently decided to stop feeding therapy and start a different feeding approach with his OT. But she said that if she were a child in Isaac's situation, she would want me for a mom, because if something isn't working, I don't continue doing it anyway, I move on and find a new way to approach it. Hearing that, means the world to me. We've been on quite the journey over the past two and a half years, and I know many of you reading this have a child with special needs, and you have been on a similar journey or even a harder, more complex journey, with your child. Just remember, you're doing a great job, and you're doing everything you possibly can.

Stay strong,

Sierra