Thursday, April 26, 2012

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. 

Monday, April 23, 2012

My girl

My favorite

"Isabella, can you please stop posing. Just be normal." So this was her next pose, as she said, "What do you want me to do!"

And then, I finally got a real laugh, and the picture is soft--boo.

Happy Monday!

Friday, April 20, 2012

Siblings, Stella, Legos...

Those things in the title don't go together. If it were something like, Stella, poopy diaper, stick of butter--that would make more sense. If we put a stick of butter in a poopy diaper, that would be Stella's dream come true. Now that you're ready to throw up, we'll move on.

Mommmmmy, Isaac made me cut my arm! 

And yesterday, when I told her that she and Isaac would get to go to Oma's house to play, she slapped her hand to her forehead and said, "You mean Isaac is coming too? Why is Isaac coming? Doesn't he have an appointment? Whenever he comes, he makes the people in the dollhouse talk when I don't want them to talk. If he comes, I'm never playing with the dollhouse!" 

We've had a lot of this angry attitude lately. It frustrates me because her life is so freakin' awesome that I'm not sure what she has to complain about. I remind myself, and my mom reminds me, and Walter reminds me, that she's four and a half, and it comes with the territory. Whenever she blames Isaac for something he looks at her with complete bewilderment on his face, or laughs, which is what he usually does when she gets in trouble.

We had a really good week of therapy for Isaac. Yesterday we were in the waiting room for feeding therapy and a little boy who looked about Isaac's size, was screaming because his PT was making him use his legs to push himself along on a riding toy. I told his mom that I had tears in my eyes watching him do that because Isaac hasn't done it yet, and I know how amazing those triumphs feel. And then last night, Isaac got on his riding toy, and he did it! It was awesome, and I was cheering like a crazy woman!

He's getting so much stronger, and I love it. We went to PT on Tuesday, and he saw Kate and was like, dude, I know what to do. She wants me to do my sit to stand exercises...I got this. And then at feeding therapy, where last week, he literally screamed and/or had his angry eyes on (I got that from Toy Story, the angry eyes, Isaac really likes to employ angry eyes at therapy sessions) all because he had to use his signs to get what he wanted, yesterday, I put him in the high chair, and he was signing right off the bat. Relief. Trust me, an hour of unpleasant therapy, is exhausting.

Oh, back to Isabella...she has an ear infection and along with it, a lack of hearing. For real, this isn't just selective hearing, which I know all about, no, she actually asks us to talk louder. I'll probably take her to an ENT after she finishes the antibiotic. For a while I've thought she needed her hearing checked, and this whole thing has kind of pushed me over the edge.

Isaac and Stella together, make me smile...

She is so gentle with him

Walter and I have been a tad obsessed with Legos lately. I'm not kidding, a few nights ago we were playing with Legos after Isabella went to bed and while Isaac was having a feeding. 

A walk in the woods...

Do you know how much cheering was involved to get him to wear those shoes? A lot. That's how much.

A big congratulations to my brother who was accepted to the Bio-medical Engineering Program at Ohio State University. Way to go! I'm so proud of you! He and his girlfriend are so cute together! I told her I wanted to borrow that dress. But she borrowed it from a friend, so that probably won't happen. Bummer! It's so cute!

Monday, April 16, 2012


I've tried to write Isaac's birthday post a million times in the past few days. It just hasn't worked out. I've scrapped a few drafts and deleted a bunch of pictures because I was having a really bad photography day on his birthday and couldn't get it together. Oh well. It's not like I don't already have enough written about the kid and obviously there are plenty of pictures from the past year.

I was supposed to write his entry for the 9pminus Yearbook--didn't get that done. It's okay, next year may be a better year to do that anyway. I haven't even been able to read the Yearbooks they sent after we got Isaac's diagnosis. The day we got them in the mail I couldn't wait to read stories about other people's children who are like Isaac. But I started, and it was too much, because sometimes it's just way too much to think about. There are random moments when I'm reminded that my kid, isn't like other kids. Like today, at ballet when two little boys were running around, one younger than Isaac, and one half a year older. With that said, I think Isaac will walk by his third birthday.

There is a song by JJ Heller (I hope that link words) that the first time I heard it, I knew the first verse fit Isaac and I perfectly:

You’re different from the way I thought you’d be
But here you are in front of me
So full of light I watch it overflow
A lovely mystery

And I am lost for words
You’re more than I deserve

If you've never listened to her music, you should. I've gone back and forth on whether or not I should include the last part of that quote. When I first heard the song and instantly thought of Isaac, I thought selfishly, "no, we both deserve more--this is not what we deserve." I think on this second birthday, I am lost for words, however cliche that may sound. This past year has been long. Walter said he felt like we should be celebrating his fourth or fifth birthday with everything that has happened in the past year. It's been hard, but I've learned so much along the way and I truly believe that I am a better person because of Isaac. Isaac's feeding therpaist tells me that I am a "bulldog mom". I don't think I really have a choice. If I want things done for Isaac and I want them done correctly, I have to be a pain in the butt! I think any parent of a child with special needs learns quickly that they can't sit back and watch the story unfold. You and your child are the story. And if you want that story to be a good one, you'd better pull it together and get your bossy pants on!

We were really surprised to see that Isaac was excited to open presents...

He is very excited about this truck...

He covers his face when he's really excited, kind of like, I can't believe this amazing thing is happening to me!...

Example: I can't believe this sand table is so amazing!...

Another Example: I can't believe my sister looks so funny when she runs and dives onto the blanket!...

I made a cake. It had a crater in the middle. I tried to crop it out of the picture because it looked so horrible. Isaac loved having us sing Happy Birthday. We ate three pieces of cake and I threw it away. End of story. Obviously Isaac didn't care about the cake, but he did think the candles were pretty amazing.