See Christian and Lola's ISR video!

Tuesday, June 25, 2013

"He is still going to be your perfect baby."

I started the day going through the motions of Stay-At-Home-Mom-Land.

There was no more creamer. Or milk. So I put Cool Whip in my coffee. Yes, I said Cool Whip. Don't judge me.

I wore yoga pants.

It was grand.

And then just like any other morning I opened up my lap top. I noticed a YouTube video that had been shared a few times by other friends and I hadn't yet opened it. I decided to open it this morning with my Cool Whip coffee in hand.

I heard the pretty singing and saw the faces of parents who have children with special needs. They held up words.  They were powerful words. Words about hope. Words that served as advice on diagnosis day.

I guess what struck me was that this wasn't a sad video. This wasn't a woe-is-me video. This was a here we are and this is what you should know going forward video.

But then I saw a friend of mine. She was holding up words.

They read...

"He is still going to be your perfect baby."

I sobbed. Like, ugly cry sobbed. And when I tried to retell it to Manny later on, I almost couldn't get through the sentence.

I have so many thoughts and feelings about that sentence but I'll elaborate later. For now I can sum it up in three words.

He totally is.

I gave Christian a bath today. Every time I give him a bath, if we're not a hurry, I take his right hand and make him splash the water. Then I ask him to splash. He never does. I always chalk it up to him being so relaxed in one of his favorite places - a warm bath.

But today I splashed his right hand while I had him sitting up in the bath. Then, like always, I asked him to splash. I said, "Now, you do it." And do you know his little right hand started to buzz. He was trying to raise it out of the bath water and open his hand. He did it several times after I asked him if he wanted to splash. I had waited for him to do this for years now. YEARS. At first I thought maybe I willed him to do it. But he was ready to try and splash on his own.

So then Lola got in the water with him and I told him we should splash her. So I had both my feet in the tub while sitting on the edge, holding Christian up in the water. I grabbed both his arms and helped him splash his sister. He had the biggest smile! But then Lola started splashing back. Normally I would tell her to stop because her splashes drench the bathroom but she really wasn't hurting him so I let her continue. We kept on splashing back. He just smiled and smiled, I was laughing, and Lola was giggling.

I looked down at my now soaked yoga pants and said, "You guys got water on me!"

To that Lola responded while giggling, "Sorry we got you wet, Mom!"

Do you know that I wanted to cry when she said that? Sorry, WE got you wet, Mom! I don't really know how to articulate my feelings about it. It was all so normal and perfect. They, as brother and sister, were playing and got Mom's yoga pants all wet. It was both so mundane and so extraordinary at the same time.

I highly suggest you watch this video. And if you do it with a cup of Cool Whip coffee I promise not to judge you.

Wednesday, June 19, 2013

The Stomping Sister

We have been enjoying summer and trying to stay out of the heat! Christian especially likes to swim at Gramma and Grampa's pool because it's so warm. He loves the warmth and cold is kryptonite. 

Lola found some slime in the dollar spot at Target. It was all the rage in our house last week.

Of course, Lola is "helping."

Lola is always helping with Christian and it's always funny to watch. I'm glad she's so close to Christian and feels so strongly about him. She wants to help feed him, she gets excited when he smiles, she's one of his biggest fans. 

She knows he's special. I could always tell she could sense it even as a baby. But now she understands. I've made a joke about Christian running and messing up her toys and she quickly corrected me with, "Christian can't walk!" as if I were just being ridiculous. So I told her maybe he did it in his dreams and she totally bought it. 

I have been noticing that she has been a little more daring and less careful with him. The other day I was getting Christian ready for a bath and had him laying down on a towel on the floor. As I was gathering his clothes I could hear Lola singing and talking and stomping. I peaked around the corner and found Lola stomping around Christian on the floor. She had a foot raised and was slowly lowering it down to stomp in between his legs. Like, stomp on him!

I seriously freaked. I yelled, "What are you doing?! Don't do that!" 

I couldn't believe she was going to stomp on her brother. She was so scared she ran to her bed. I made her apologize and everything but I've been thinking about it for the last few days. Especially yesterday when she hit Christian with one of her dolls on purpose. 

I have two thoughts about this.

1. She knows better! She knows she has to be more careful. And we should be more careful with Christian. He's kind of breakable. We don't kick or stomp or hit Christian. Ever!


2. Isn't this how brothers and sisters act, though? I don't want her to have a complex. I mean, this is our "normal." And I don't want her life and relationship with him to be "careful." I want it to be natural for her. Should I be allowing her to rough play with him? Is this instinctual to be mean to your brother, regardless of disability? Shouldn't I be happy she feels he is normal enough to take it? She treats him like he is normal. Even Christian can't escape Lola's wrath.

These are the questions I ask myself because I don't know how to apply a normal brother-sister relationship to them. I guess I don't really need to apply it because they're redefining it. 

But no stomping on your brother.

And, for the record, Christian doesn't make a peep when she's hitting him with her doll or stomping around him. So she hasn't hurt him yet. And that's saying something because he is the biggest cry baby!

Oh, and I finally sat down to fill out the paperwork for Christian's kindergarten class. I've been putting this off because of the amount of paperwork I have to fill out. I'm not one to get sad and weepy about filling out the blank lines awaiting answers about my child's development. I actually think it's kind of funny. 

Wanna know if my kid has any social or developmental concerns? You got some time? Wanna go get a drink? This is going to be long.

The developmental milestone checklists are a big, fat goose egg. But the medical portions? I could go on and on. Paragraphs of diagnoses.

Read that carefully. 

But at least it's getting done.

We're also closing in on Christian's other birthday. The day he came back to us. I've got some thoughts so stick around.

Tuesday, June 4, 2013

Summer Time and Frazier Water Protocol

I am loving summer time!

And we've kept ourselves busy doing summery things like swimming! Christian loves warm water. He just melts right into it. Our pool is a little cold yet but Gramma and Grampa's pool is over 90 degrees! Yesterday Christian went swimming and Gramma brought him out of the pool to lay him down. He started yelling and carrying on so she asked him if he wanted to go back in. He responded with his voice, she brought him back in and never heard another peep out of him!

I am loving that he is really, truly communicating with his voice in response to questions. This kid just blows me away! And I love when he smells like sunscreen and chlorine and he's tired from an afternoon swim. It's so summer vacation.

I've also made it a goal that Christian get in his stander every single day for an hour. We should be doing this regularly because it helps keep his bones strong but with running around and Christian's early bed time, most days we were running out of time. But now that we are home enjoying not having anywhere to be, he has been in his stander almost every day.

We're also doing something new! We've always given Christian tastes when he's up for it and recently he has really liked tasting french fries. So we brought some french fries to his speech therapy last week. He showed his speech therapist that he would taste and swallow but didn't want to hold the french fry. So she got an orange Popsicle out and all of the sudden, he was interested in holding the Popsicle. He exercised his pattern of pushing it away first and then swinging it back around, with help, toward his mouth. And he even brought his tongue forward to his lips to taste it. 

After seeing his pattern and his ability to swallow but his mouth's inability to organize, his speech therapist thought he would be a good candidate for Frazier Water Protocol. You can read more about it here.

The idea is that by introducing water a few times a day by mouth, we're working that swallowing muscle. The thing is that Christian doesn't vomit anymore (yay!). I know this sounds gross but when he was vomiting all the time, he was working his swallow muscle constantly and I really think it helped him learn to protect his airway. But now he's not vomiting. Which is great! But if he doesn't use those muscles regularly he'll loose them. This program will help him exercise that muscle in a functional way while greatly reducing the possibility of future aspiration pneumonia. Christian has never had a pneumonia and we'd like to keep it that way.

We're also cleaning his mouth several times a day along with offering about 3 mL of water by syringe. This keeps his mouth hydrated, reduces bacteria, and provides overall better oral care and hygiene.

After just two days of following the protocol I saw a huge difference in his mouth. This program couldn't have come at a better time because I was starting to feel like his dry mouth was getting out of control. And remember when I mentioned he was vocally responding? Well, when I've been giving him his water, he starts vocalizing. I tell him if he wants more he has to tell me with his voice. AND HE DOES IT! I have to get this on video. Like I said, this kid blows me away!

So we're having a pretty awesome summer so far and I've even started thinking about a certain little boy who's turning five pretty soon and how we'll be celebrating. This is a big one, folks!

Happy summering!

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