Marveling at what used to seem like an impossibility

Yesterday I clicked on my facebook memories and scrolled through posts I'd written and pictures I'd posted, going as far back as nine years. I read that nine years ago, the feeding therapist Isaac had at the time, told me he probably would never be able to chew food and would have to drink all of his meals. Nine years later and she wasn't completely wrong. He can't chew food--though we did give our best effort for about a year, but he doesn't necessarily drink all of his meals--though they are all pureed, he does eat them with a spoon, so I won't count that as drinking. 

Isaac's preferred food is Silk Almond milk yogurt and 8 ounces of Kate Farms formula. He would have that exact meal five times each day if I would let him. We let him have this meal two times each day and he has to have 'soup' for the rest of his meals. We started calling every meal except yogurt, 'soup', only because that's what the inpatient feeding clinic called it. Unfortunately, these 'soups' don't magically appear. I blend food (using my trusty blendtec blender) for him every day--sometimes multiple times each day if I haven't blended large enough quantities to last more than one meal. 

It has only been during the last few years that Isaac has been feeding himself independently. Prior to this accomplishment of self feeding, I had to spend painful thirty minute increments trying to get Isaac to eat all of his soup. It was a situation where he could launch an Angry Bird (maybe two), and then he had to let me feed him a bite of soup. It was quite unpleasant. Then, after the meal, he was rewarded with time on his iPad. It was a horrible cycle and it has taken years and many baby steps to wean from that whole situation. I won't divulge all of those baby steps today because it would probably be horribly boring. I'm thankful that 99% of all meals these days are accomplished with little fanfare and he feeds himself with such a rapid speed in order to finish the meal as quickly as possible. Oh, and he doesn't get screen time after every meal anymore (only breakfast). 

Have you ever met anyone who didn't like to eat? Who, even if you offered them the most decadent dessert they would refuse it? Me either. Until Isaac. It's hard to understand. 

One of Isaac's preferred soups is what I call peanut-butter-sandwich-soup. It's exactly as it sounds: two slices of bread, a banana, two tablespoons of peanut butter, sometimes some carrots or whatever other random items I throw in the blender, and some oat milk. I made this soup for him this evening and stuck it in the fridge telling him that whenever he was hungry, his next soup would be ready for him. Usually I have to keep him on track for each meal because he eats approximately every three hours, but since this was the last meal of the day he had some leeway to choose when he wanted to eat. I sat down in the living room to read my book and about twenty minutes later I heard him come upstairs from the basement and get his soup out of the fridge. He put his soup in the microwave, turned it on, and then I heard him take it out of the microwave and blow on it, hard, many times (even though I know it wasn't hot--we heat all soups for only 30-45 seconds which is barely room temperature because he doesn't like anything too hot or too cold), and then he brought his soup into the dining room and sat down and continued blowing on it to cool it down. Meanwhile, I sat unnoticed in the living room, watching him quietly. He sat for a moment and then grabbed the towel that he uses to wipe his face (leftover habit from the feeding clinic--it must be a washcloth type of towel, not a paper napkin or paper towel), and proceeded to rapidly spoon soup into his mouth. 

I observed all of this unnoticed, and I kept it that way because I wanted to take a moment to marvel at how much progress he's made in nearly eleven years (his eleventh birthday is next week). The fact that he noted his hunger, stopped playing video games, got his own soup from the fridge and heated it up on his own without asking for any help, may not seem like much, but it's absolutely amazing for him. I'm so thankful for this brief, seemingly ordinary moment. 

Feeding Update

35.6

No. That can't be right. She's looking at me. She knows this is too low. 

-Let's do it over again.
-We just had it calibrated.
-Well, that can't be right. We were just at GI and he weighs 37 pounds. Bud, step back on the scale; real quick.

35.6

I felt the tears. Here they come and once they start they don't stop. 

She offers to try a different scale, so Isaac puts on his shoes slowly, and deliberately because his socks have to be just right (double checked and rechecked) before he puts the shoe on and then the strap has to cross the velcro in just the right way. After a couple minutes of watching the shoe donning process I say cheerily, "Good job, Bud!" We've worked hard for this independence. Then we march down the hall to another scale. 

35.6

She gives me the, "I told you so" look. I ignore her. 

"Okay, Bud. Time to put those shoes back on!" And we walk around the corner to meet with the rest of the team. By this point tears are dripping down my face. I tell them I'm about to have a meltdown, so they should get ready because this is going to be a big one. The behavioral psychologist tells me we'll come up with a plan. I tell them that I don't want to hear another plan, and I drove two hours just so that I could sit there and have three people analyze everything I'm doing and question why my son is suddenly down almost two pounds! It's dramatic, I know. But I've worked for every single ounce this child has gained over the last five and a half years. 

Isaac has had some vomiting lately, so we're attributing the weight loss to that. Part of me refuses to believe the number on the scale.

Other than the initial upset, the appointment went well. We have some new ideas for his outpatient OT who is focusing on teaching Isaac to chew. We're also working on a plan toward more independence during his meals, and trying to figure out new ways I can threaten him, I mean, encourage him to finish his drinks on his own. During our family game night on Friday, I meant to tell Isabella it was her turn and instead said, "two drinks!" We all burst out laughing. Some days I feel like my thoughts do not go beyond telling Isaac to take two drinks. 

We're also looking ahead to summer and considering another inpatient stay to push Isaac to the next level of eating and managing food in his mouth. He has made significant progress but only eats pureed food blended to a very specific consistency. This is fabulous, and I am happy to remain in this place but I also want to keep moving Isaac forward to more age appropriate food intake. Every time we go back to The Children's Institute in Pittsburgh, he asks if we're going to get a room and walks around like he owns the place. I'm thankful he has such a positive association with the hospital and I know if we were inpatient again he would take it all in stride.

We continue to maintain The Institute's meal schedule at home. He has five meals each day. Two meals consist of his eight ounce drink and the other three consist of six ounces of puree and his eight ounce drink. He has thirty minutes to complete the meal, and we do use the iPad for motivation. If it weren't for the iPad (and of course our inpatient stay), he would still be tube fed. Isaac does not understand his own hunger though he has started to express thirst, so I think this is a good sign, and he has no inherent desire to eat. He doesn't even really care what things taste like, just that they are perfectly pureed, so you'd better believe I'm amazing with a blender!

That is all for now. If you have any questions about inpatient feeding programs or The Children's Institute and their philosophy, do not hesitate to ask.

Sierra

Carrots as rockets

I'd shared my feeding therapy frustrations many times with Isaac's therapists, and then finally, we dropped out of the second feeding therapy approach we'd tried...and failed. Well, maybe not exactly failed. For awhile we would have been given a D...maybe a C-. Many months ago, Isaac's Occupational Therapist told me that she was going to attend a conference on an approach to feeding therapy that she thought would be a good fit for Isaac. I was all for it, and looked forward to hearing what she thought after she attended the conference.

Heather (his OT) returned from the conference full of excitement. She planned to start as soon as possible, but she warned me that we would have to do some weird stuff. Uh, okay, I guess I'm up for anything, I just want the kid to eat one day...or at the very least, touch food. She told me that once we reached a certain point of success during the program, we would have to put food in our mouth, chew it up, and spit it out, so that he could visualize what chewing does, or that food is safe to eat, or something like that. And then she told me that you begin with green and orange foods, which meant, broccoli. Oh man, Heather, I really don't like broccoli. She said we could use asparagus instead. For whatever reason, we've been using green apples, so I'm cool with that.

You have to know something about me. I don't like messy eating. Can't stand it. It disgusts me. I'm okay with Isaac being messy. He can smear food, throw food, smash food, I really don't care, whatever gets him to touch it and eventually, eat it. But as for me, I'm the person who cuts up my slice of pizza into small bites so that I don't risk something getting on my face. I would never eat a cone of ice-cream, bowl and spoon for me. Messy appetizers that are not offered without a plate and fork--forget it. The only people I am truly comfortable eating in front of, is my family. Obviously, Isaac isn't the only one who has problems. I'm just going to admit here, that I have been in therapy for my own problems, including but not limited to my issue with eating in front of people. Either way, therapy is awesome, and I firmly believe everyone (probably some people more than others) should have a good therapist, so go out and support the mental health professionals!

Well, obviously the idea of spitting out food onto my hand, had me concerned. But I knew it would just be Heather, Shelly (Isaac's speech therapist), Isaac and me, sitting at the table, so I was sure I could be brave enough. We've had four feeding therapy sessions so far, and Heather is super outgoing, and full of energy, and silly...basically, everything I'm not, so if she's cool with looking ridiculous, I try to spend those forty-five minutes being okay with looking ridiculous. Isaac was being very brave this week. During most of the session he stares at Heather like she is completely insane, but this week, he actually touched the carrot and the cheese to his face--huge step for him. How did we get him to do this? Obviously, we pretended the carrot was a train and chugged up our arm, which was the mountain, to the top of our head, the peak of the mountain, and then back down the other side. Then, Isaac shocked us by putting the carrot to his face, so obviously the carrot had to be a rocket that shot out of our mouth, so that just maybe, Isaac would be cool with putting something, anything, aside that infant, hospital issued pacifier, in his mouth. I shot a carrot out of my mouth like it was rocket. Isaac thought it was hilarious, and we all laughed. And I was brave, just for him, because I want my kid to eat.

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.

*********************************************************************************


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...

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

Exercising with a five year old.

First of all, exercising with a five year old is definitely not a good idea. I've been trying to figure out how to exercise during the day, so that I have don't have to do it at nine o'clock each night when I'm already exhausted. Since Isaac cries when I pee, it seemed a far fetched plan that he would contentedly play while I spent an hour exercising. Well, as it turns out, he wasn't the problem. My little sports commentator was, and I heard each of these phrases, at least two times: 

She's better than you.

Why aren't you doing it. 

Look, I'm doing it better than you. 

She has her leg up higher. 

Why are just laying there. 

I'm hungry. 

Why can't I have the weights? 

I really wanted the weights!

I'm starving. 

She's doing it way faster. 

I'm sooo hungry. I'm starving. I need something to eat right now!

You need to do it faster, like her. 

Are you done yet? 

When can I eat? 

I'm seriously considering re-joining the gym. 

Isaac thought it was hilarious that he could put his pacifier on this toy and then put it in his mouth.

We are also working very hard at getting him to agreeably sit with us for dinner, and have a tube feeding at the same time (that's the tricky part). The last two nights it has worked perfectly. In his mind, tube feeding + high chair = DVD player, or else I'll scream forever. So we are very grateful for a couple peaceful meals.

If I'd kept track of the hours Isabella spent cleaning the chalk board over the past few days, you would assume I was running a child labor camp. It's clean. And I never asked her to do it. Obviously. If I'd ask she would have thought I was torturing her.

Isaac's Occupational Therapist is amazing. First of all, she's the polar opposite of me. This means that she is always super peppy and when she sees Isaac she says, "HIIIGH FRIEND!" in a really loud high pitched voice, and has so much energy, that I wish I could bring her home with me. She dressed up as a ladybug on Halloween, which totally freaked Isaac out, but he got over it and agreed to work with her that day. I reserve my high pitched happy voice for Stella and our nighttime cuddle, which always make Walter roll his eyes. It goes something like this: Well there's my puppy daaawwg. Oh what a cute Stella Bella. You're my poopsie poopsie puppy do...okay, that's probably enough. Please don't stop reading my blog now. It's our moment, okay?

She tried to get Isaac to pretend he was eating the rice. He gave her an intense look of disgust and refused to touch the spoon.

Another mom at OT was commenting on how angelic Isaac always looks..."does he ever scream?" Does he ever! The kid has lungs of steel. Don't let his blonde curly hair and big blue eyes fool you! Just hang out at my house for a day and a night.

Isaac has started using a few new signs lately: outside, like, stuck, train (correctly, instead of his own variation), sit (which has only increased his bossiness), diaper, out, open, shoes, socks. He is always saying some new sounds, and makes verbal approximations to the words: Woody (essential), help, house, home, Mario (another important one), Wii (can you tell what he likes yet?), Luigi (yep), Isabella (ba), Oma, Opa, Papa, and I'm sure a few others.

In OT he is working on some fine motor skills such as, zipping a jacket (we practiced about thirty times during ballet today, so he's pretty good at that one now), and also everyday tasks like helping to put his pants on (now if I can get him to stand, and ask him to show me a leg, he will help put his leg in his pants), taking on and off socks and shoes (which we're actually going to stop working on since he is getting his braces next week, and he will have to work up to wearing those all day), recognizing that he needs a diaper change, telling us what he wants without throwing a tantrum, touching food, transitioning from playing with one toy to playing with another (agreeably), and about a million other things. We're a very long way from these everyday tasks, but he is making progress in baby steps, and we'll take it!

My lesson learned for the day: don't put hummus in Isaac's blend. He's been smelling like garlic for several hours. I like garlic, but when it's burped up...totally gross. I hope you enjoyed that little tidbit of information.

Goodbye!

Fall photo shoot

I hid from my kids and ate two dark chocolate biscotti. I'm not sure what that says about me, but I happily dunked the biscotti in my tea, and since I'm tired, more often than not, I chewed with my eyes closed. That's talent. Napping while eating, try it.

Isaac woke up with a disgusting runny nose. He's basically a snot machine today, and since we don't have any tissues, obviously I use my sweater to wipe his nose. That was a given, right?

I don't know about this girl. If you have any "parenting of a five year old" tips, let's hear 'em, because I can't do anything right around here. When I was complaining to Walter that his snoring was keeping me up at night, she did have some very good advice: Just pretend it's Japanese music. It's not working. And my parenting isn't working either.

You can't tell, but she complained throughout this entire series of pictures.

This little man was my photography super star. It helped that Walter was diving through leaves behind me, which Isaac thought was very amusing.

And for this series, Walter was running into a wall and falling on the ground. Whatever it takes, right.

Isaac is doing really well with walking. He now insists that he walk everywhere. While at the grocery store (moving at a very slow pace), I asked him several times if he was tired and would like me to carry him, he said, "No!", ever time. It took us awhile, but he made it all the way around the store, and even back to produce for a forgotten lemon.

Last week he had a neurology appointment. His doctor is very happy with his progress. She thinks we should be admitted for intensive feeding therapy sooner than next fall, but I can't handle that. We're sticking with fall of 2013. As for now, I'm pretty sure we'll terminate (doesn't that sound intense) feeding therapy before the end of this month. I'm tired of it, Isaac hates it (which I know isn't a good reason, but I really think he just doesn't like his feeding therapist), I'm tired of sitting at a weekly appointment listening to him scream for 30-40 minutes, and he has been refusing to eat anything for over a month. So, at this point, what's the point? On the other hand, a week ago he licked an M&M, at Chick-fil-A he sucked on a french fry, and Saturday night he was putting popcorn in his mouth. I don't know what to think of this kid!

We are gearing up for six appointments this week. On Friday Isaac will be measured for his AFOs (ankle/foot orthotics). I would tell you the name of the medical reason that he needs them, but that would mean getting up from the computer. Basically, low muscle tone makes his food tilt inward when he walks, and if we don't correct it now, he will end up with chronic foot and back pain when he is older.

Until next time,

Sierra

p.s. Thank you to the four people who joined my blog, it made me very happy. :)