My response to an article...

I read this blog. And I've definitely gone through stages where I couldn't read it, because Kelle is just too darn happy about everything. And she makes a life where special needs is involved seem perfect, and beautiful, and full of harmony. Well, I'm not here to crash the party, or at least I don't want to, but darn it, when the only way your child is fed, is through a tube, and due to your own forgetfulness you don't clamp the little white clamp on the extension set, and then while they're sleeping in the car, the tube pops open, and they puke out God only knows how many precious ounces of fats and calories, that's when special needs really blows. 

I read this article earlier this week when Kelle posted it for Down Syndrome Awareness Month. I left the article feeling a variety of emotions. The first one was anger, because for us and for most of the people I know in the special needs community, we/they do not have in-home therapy services. That would cost a fortune. Sure, that would be fabulous. To not have to worry about child-care for Isabella, packing up the feeding pump and supplies, diapers, spare clothing in case the contents of ones stomach empty by accident, and snacks, there must be snacks because obviously, Isabella will be starving the minute we arrive anywhere. Yeah, I think I could easily get used to therapy in my home. I'd even vacuum a little bit more so that they wouldn't leave my house with a good helping of Stella. 

As stated in the article: 

"Mothering a child with special needs? Well, that's the easiest part. Yes, there are challenges—because life is hard—but we are equipped to deal with them. Loving your child—regardless of how many chromosomes he or she might have or how many times you worry about the future or when and how she learns to read—it's like breathing. It's what you do, without even thinking. You love your child. You believe in your child. You fight to make the world a better place for your child. And that? That never changes."

I completely agree, I do feel equipped to deal with whatever challenges are ahead of us. And one of the only reasons I feel that way is because of the love I have for Isaac, and the amazing bond the two of us have with each other. The other reason, is my faith. Some people don't believe that God still performs miracles, but I believe that Isaac proves that miracles still happen. I would do anything for Isaac (and Isabella). I will fight for him to end. I do not believe that anyone is fit to fill my shoes (except maybe my mom, because she doesn't put up with any crap, and I've learned most of my survival skills from her). 

The only problem becomes the mothering part. Like my friend told her daughter's psychologist (sorry Laurie, I'm going to steal your words), "you don't want to be in this club". Sure, a new world is opened up to us. One that we didn't fully understand until Isaac came along, but the truth of the matter is, I'm no longer just a mom. I'm a physical therapist, an occupational therapist, a speech therapist, a feeding therapist, a nutritionist, a maker of blended meals, a care-taker of a g-tube, and then, on top of all of that, I have to try to feel normal, and remember to just be a mom. So no, in my opinion, mothering is not the easy part. Loving, yes, that's the easy part. Mothering a child who is par for the course, that's easy. And I didn't realize that with Isabella. At the time, I didn't realize that when we played with the shape sorter and she knew her shapes and colors in no time at all, that it would ever require more work than that. I took for granted that she stood up and walked, fell down, stood up again, fell down, and did it all over again, and within a few weeks was walking. Oh, and the feeding, wow was I naive. 

I love my children without thinking--that's a given. But caring for Isaac without thinking? Nope. Trying to figure out our next steps to take with him, following through on his goals, setting the stage for progress and success, planning out appointments, following up with all of the right doctors, that all takes a lot of thinking. And often, all of that thinking is really annoying and takes away from mothering. 

I agree with Kelle, I too have changed since Isaac's birth. I too am stronger, and have learned things that I never thought I would learn. And that is the truly wonderful part of this journey. But there are so many layers to this onion. There are the layers of grief, and acceptance, and the affect on your marriage, and "typical" siblings, and the list goes on and on. Some day, I want to share all of those layers. Not only for me, but for people who are becoming more aware of children and adults with special needs, and also for the people who are "in this club" and quite possibly need someone to relate to. 

Oh, and for the record, the designer of Britax car seats must have had issues with his parents, and decided to take out those issues on any parent who ever had to take apart the car seat to wash it. 

Can you tell that Isabella loves when I take her picture? 

Evelyn...

This picture has "I'm five, and I have an attitude" all over it. 

I can officially say that Isaac is walking, more than he is scooting. It's awesome!

He thinks he's pretty funny. Oh, and he picked out the robot shirt and insisted that he wear it.

He kind of walks like a chicken, and it's super cute.

Socially, we've seen some really big improvements. That's Milo, with the overalls on. He's also Isaac's greatest enemy, except, Milo doesn't realize that, so the fact that they are standing at the same table and Isaac isn't screaming or pushing him, is huge.

Counting Sheep

Mom! I love Isaac, and I was about to cry happy tears because I love that he's my brother.

Moments like that, make me happy. As a mother, what more could I ask for? I want Isaac and Isabella to be close. Actually, they don't really have a choice, because one day, she will have responsibilities with him that we never thought she would have. Sometimes Walter and I worry that Isabella's needs are put on the back burner because of Isaac's needs, but in a way, this is just how family works. We compensate for each other, and we have to learn that from the start. It happens in families that don't have a child with special needs. The older child has to learn that someone else has greater needs that moment than their own. It's a hard lesson to learn, but one that I think my parents worked hard to instill in us.

It's like taking the time to see my brother off to his spring dance. We didn't have to go. Both kids were crabby and I knew they would be unhappy most of the time we were at his girlfriend's house, but I told Walter, I have to do this for Josh. I'm glad we did. And yes, both kids cried most of the time we were there.

It used to be that Isabella had her computer time while Isaac was napping. This was because anyone spending time on the computer in front of him, made him think he should have computer time. And all of that led to a lot of unnecessary tantrums. But now, he's okay with just watching.

Speaking of tantrums. Isaac is perfecting them. We're talking full blown screaming, head banging, flailing, throwing anything in sight....mmmhmmm, it's fun. We're having so much FUN around here. You should be jealous. The screaming is usually induced by our recent attempt to cut back his TV time. He's an addict and needs a serious intervention. TV Addicts Annonymous, we have a new program member for you. I know what you're thinking, this is all your fault. You're the parent...blah blah blah. Well guess what?! I completely agree! But once upon a time, the only way to get the kid to swallow was if he was watching Dora or some other show that is equally as annoying or worse, Elmo (seriously, whomever created Elmo, should be in jail). So anyway, we're trying to cut back, and use other ways of distracting him while he has a feeding. But he usually gets really mad and throws things at us, so I've started wearing helmet--just kidding.  Today the feeding therapist was talking about how we really need to work on compliance and our behavioral issues. I agree. So I don't recommend coming to our house for many months, unless of course, you don't mind having things thrown at you.

On a happier note. We went to a sheep farm. A little back story, the little girl in the first picture, her name is Ellie, and she also has a feeding tube. Now, how on earth did I track down another kid around us with a feeding tube? I met her mom in line at the grocery store. Yep, we have a pretty amazing grocery store. It gets better, I met Laurie in line at the grocery store the day before Isaac's PEG surgery. I know! Crazy! We exchanged numbers and she said to call anytime, which I did, at about 9:30 p.m. the night we got home from the hospital when I was having a very emotional freak out moment regarding Isaac's newly placed tube. She was amazing, and I am so thankful to have met her and her wonderful family. They have quite the story, and she and Ellie are fighters, so we get along.

I hope this Llama makes you laugh. It made me laugh. 

I keep forgetting to write about something really great. You know the blender company, Blendtec? I emailed our story to them, and wrote about how I wanted to start Isaac on a blenderized diet so that he could "eat" whole foods, and they donated a blender to our family. A blender may not seem so cool, but Google it, and you'll think it's cool. And if you know anything about constipation and administering suppositories, you'll really think it's cool when I tell you that Isaac is pooping every day. Yep, now you're hooked with the coolness, right? What's going in his feedings....

(not all at once, of course) whole milk, whole milk yogurt, multi grain cereal mix, avocado, banana, peaches, pears, spinach, carrots, flax seed, wheat germ, almond butter, cottage cheese, beef barley soup, stuffed bell pepper soup...

We're down to about sixteen ounces of formula a day and the rest is blenderized food. Aside from his new ability to poop on his own, he also seems to have more energy. And I am happy that he's getting real food, even if it isn't by mouth. I still count calories, fat, and protein so that he is getting the same amount as he would with his usual formula intake, but he's up to twenty pounds, so we're doing really well. 

tube feeding 101

This specific post, is mainly meant to inform anyone who is interested in learning about tube feedings (awareness is always good) and those whose children have or are getting a g-tube. If you're new here, and stumbled upon this blog while researching for your child's upcoming surgery, I'm so glad you found this site! I watched several You Tube videos on tube feedings and also stumbled across some family blogs before Isaac's surgery a couple weeks ago.

And for those who are new, a quick summary of what's up with Isaac: After months of going from doctor to doctor, we finally found out that he has a deletion on his ninth chromosome. As a result, this causes a wide spectrum of developmental delays and health problems. Isaac ultimately needed the g-tube because his oral aversion to feeding became so severe that each feeding was accompanied by tears, sometimes from both of us. His growth has also been extremely slow and as of a couple months ago he was the average weight of a six month old and the average length of a ten month old. He is now eighteen months old and almost weighs seventeen pounds, which is amazingly wonderful.

I was really scared before this surgery. I think mainly because he was coming home with something he didn't go into the hospital having. I was also worried and apprehensive about the care and maintenance of the tube and how as an active "toddler", he would tolerate the tube itself. Isaac happens to have a fairly intense personality and if he doesn't like something, he doesn't mind screaming for hours on end just to get his point across. So that's what I was anticipating. Thankfully, I can say that it has been a very easy adjustment, and honestly, I wish we'd opted for the surgery sooner.

For his feedings, Isaac sits in the high chair. Sometimes he watches a show, sometimes he plays with play doh or other random things. And sometimes, though not ideal, he scoots around the floor and I follow him around with the IV pole. Yep, I'm crazy.

This is what the pump looks like...it's all very self explanatory....

At this particular feeding he was watching Thomas and Friends, which is one of the most boring shows I've ever seen...

This is what the PEG tube looks like. In about seven weeks he'll get a mini button.

I tape it down just so that the extension doesn't bother him or pull on the tube site...

Administering Tylenol is super easy and no longer requires restraints (just kidding, we didn't really use restraints). Oh, and don't purchase red Tylenol, it's a bit disturbing and looks like blood.

Flushing the line is very important...don't worry, the red is just the leftover Tylenol. Your medical supply kit will come with syringes. They say you can use room temperature formula and water. I prefer to use lukewarm water and always heat his milk (aka formula, but I'm very sensitive to that word, more on that in another post). Cold water or formula can cause stomach cramping. Your "formula" should be delivered by your medical supply company, along with all of your IV bags.

Don't worry, it is completely normal for the tube to stick out one or two inches. Walter totally freaked out the other day when he saw it and refused to give Isaac a bath because he couldn't look at it. I'm also very good at cleaning the incision site on my own now. I decided Walter couldn't handle that either since he would sit there holding down Isaac's arms and I'd hear him taking deep breaths throughout the whole ordeal. Trust me, it's really not that bad.  

Pretty simple! And you can barely tell he has it when his shirt is down! Because Isaac scoots, I tuck the port just above his diaper, that way he doesn't scoot and pull the tube out. Also, make sure you pinch the tube just below the port, so that stomach contents don't spill out. It's happened to me, and it's really gross.

And because you probably need a laugh after all of that...

Isaac was really excited to see Kate, his physical therapist. He did a great job and was in a good mood!

Working on climbing...