Sunday, September 25, 2011

This is whats been going on in my house

Total Naughtiness!!!

Homegirl has been pulling her Mic-key button out!! As seen in pics 1 -3. Sorry if this grosses you out, but welcome to my life. Luckily this week, when she tugged it out, I noticed it was getting yucky so I replaced it. Last year this time I didn't even no I could do that. I used to be so scared to put it back in, while this time I paused to take pictures and showed the boys (and you) what Davy's stoma(that hole you see in her tummy) looks like. I will say stuff can and has leaked out of it when the button pulls out. It is pretty common so it never phases me, even when is gets all over me.
Now pics 4- 8, Davy unhooks her feeding tube and then puts it in her mouth so she can chug some sauce. I didn't get any pics of the chugging because she is not supposed to be drinking any sauce by mouth! Not very funny Davy. I often wonder if she ever feels thirsty.
But she is obviously pretty proud of herself and her new tricks.
I'm proud of her to and thankful that she is able to be naughty.

Monday, September 19, 2011

Rehab update

It was over 6 months ago that we had a barium swallow study that showed Davy was aspirating. We started off with doing vital stim therapy twice a week. Then 8 weeks ago we switched to 3 times a week. Being that she "silently" aspirates, it's kinda hard to see the progress she is truly making. This last Friday we had another swallow study.
I was definitely more anxious this time around. I knew there were not going to be drastic changes, but her speech therapist was very optimistic that she had improved, so I was optimistic.
This time around was better in the fact that her therapist was present and I was the one feeding her during the test. It was really the best circumstances for Miss Davy.
Things seemed to be going well until out of the corner of my eye I saw the radiologist wince.
Then the test ended. Wah waaa.
Although Davygirl showed a slight improvement, she is indeed still aspirating or "at risk" of aspirating. Basically, she did not aspirate every single time.
But... I did not break down crying this time, so I guess showed a slight improvement too.
With Davy, it's not about success, it's about progress, and she really has been progressing. So all these therapy hours have not been a waste......right?

*Is it me or is someone is trying to teach me patience. Like over and over again

Thursday, September 15, 2011

These are the eyes of a wise old man

Sir Scott is 40.
Scott's schedule has been really busy. So busy I hardly get to talk to him. That makes it kind of hard to plan something for his Birthday. I have been joking how I was throwing him a surprise party. He told me, If you hate me, throw me a surprise party.
Wow thems fighting words. You know it made me want to throw a party even more. But I didn't....out of respect for my elder. I DO have something fun planned for the weekend. More on that later.
But today...... today I didn't plan anything. For some reason I thought he would be filming late. Because I think on Monday he said, I'll be filming late on my birthday.
So we went out to lunch like old people do.
And tonight he gets to go out with his Bros and do whatever it is that six 40 year old dudes do on a Thursday night.

Should I tell you 40 things about Scott?

1. Haha, just kidding I would never put you through that.

Monday, September 12, 2011

The all time greatest Gabba moment

My husband has a pretty cool job. There have been moments in his Gabba journey that have been so crazy and exciting. Most of the time I am not there for these crazy exciting moments. It's normally Scott telling me how crazy it was meeting the President was or how cool and the Flaming lips are. And me bitterly thinking, Yes, I bet they were pretty cool.
But I actually got to be there for what Scott said was by far the best Gabba experience he has had. And that was meeting Mason, sorry Mr. President.
Mason was visiting our set through the Make a wish foundation. Out of all the wishes he could have had he wished to come and meet everyone here in Gabba land.
Mason has a very rare form of muscular dystrophy called X-linked Myotubular Myopathy. He has had to live the last 10 years of his life away from children and during flu season he has been secluded from the world all together. I have had a small taste of this over the past year and it is not an easy life. And I am saying this after only one year.

You could just see how excited Mason was to be around Lance and the characters. He would not take his eyes off of them.
I asked His mom, Staceyanne what his favorite part of the day was and she said it was when DJ lance came into the greenroom to visit him, " very few people actually interact with or touch Mason, most likely out of not knowing what to do. Everyone at Gabba was so wonderful about that, and I think the fact that DJ Lance kept holding his hand, letting him take off his glasses and hugging him made him feel very special."

I can say I feel the same way about Lance. He makes everyone feel that way. I can never get a good picture of Lance with my kids because he is always playing with them making them smile.
I hope you don't mind but I wanted you guys to read part of the letter Mason's mom wrote me.

This was such a surreal opportunity for all of us. Mason is completely isolated from the world- no friends, no social interaction. Even though we take him all over the place, we have to be so careful of his exposure to people- and then there's still that issue of people not knowing what to say or how to act, so they don't really try w/ him. Most people would never pick up on the little mannerisms of how Mason is feeling, but I can tell you that the welcome that he felt, the acceptance- he totally enjoyed being part of something, of being special in a good way, not just in that "you're different" way. I know we keep saying this, but his episodes of Yo Gabba Gabba are his entire world- they fill up every waking moment of his day. And his little plastic characters, they are his friends, his security. His whole life, all his happiness comes from our love, and from the joy he gets from all the aspects of the show, especially the music- we are able to know exactly what he is feeling by what song he's singing. That's absolutely golden to us!!! From the moment we realized our time w/ him was going to be short, we've done everything we could to give him a fun life- trips, toys, adventures, etc. But what you guys did for our little boy, for our family- it was something that meant more to us than anything money could buy...

Staceyanne, I feel like we should be thanking you. This was a day WE will never forget.
If you like to read more about Mason and his family click right HERE.

Wednesday, September 7, 2011

Harper is growin up

When did my little baby turn into a boy? Ah man did I enjoy me some baby Harper. I was a Harper hog. This child was always in my arms. I am actually surprised he survived me always lovin up on him. Then at around 2 years old, he was so rudely dethroned. Mother's guilt will always weigh on me heavily with this one.

But Harper is officially a big boy now. Yesterday was his first day of preschool. This has been the carrot we have been dangling in front of him all summer. "If you give up your binky, you can go to school."If your nice to Davy...... (you get the picture)". I know not my finest parenting moment but it got us through the summer(sorta).
As you can see Harper was VERY excited to leave me behind for bigger and better things.
School has been calling his name for quite some time. I have to say I was a little nervous for him. Following rules and obeying are not his strong suit.
Lets just say Harper has a special helper for church, I know he's a total rascal.
But luckily I know his preschool teachers really well. They have had all of my boys, so they know how to handle a Schultz. I know he is in good capable hands. Hands that won't let him get away with things but hands that will give lots of hugs too.
I am happy to report the first day was a success. No major catastrophes. Now I have to deal with today, a non school day. So far Harper has asked to go to school 10 times.
I think I need to go and take this boy to the park.