The Man of the Hour

That's what Mr. Milo was yesterday. Or more like the Man of Several Hours.

Yesterday we had the privelege of being invited to go to Denver to celebrate Milo being trach free!! We had a blast while the kids played catch and tromped around in the water for the afternoon. Then we had a cookout and played on the jungle gym in the backyard. We partied till late in the evening when the kids told us they were partied out by whining and being grumpy!

I thought it would be cool to put together a montage of the festivities (you know me, montage queen!!). The first video in the series deserves a little explanation. For some reason Marissa thought it would be cool to scoop water from the splash pad and put it on Milo's head. Milo was a great sport and actually put up with Marissa's annoying game for a while before we even started filming it. Alas, she did finally end up driving him away. I mean a guy can only take so much, right?

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Regrettably, we didn't do the greatest job of taking pictures. We didn't get very many photos of the guest of honor at all. And what we did get was mostly the back of his cute curly head! I think he was pretty elusive, as he was off doing boy things like playing trucks and getting stuck behind a fence! We also did not get a shot of the extremely creative and cute cupcakes Jen made. They had little trachs on them, fashioned out of certs and tic tacs, I believe. They were the coolest!!

Congratulations Milo on being trach free!! We are so proud of you and all the hard work you have done to get where you are today!

Retro Rissa Roo Day Vol II

You may or may not remember Retro Rissa Roo Day Vol I. I decided to continue the series because I so very much enjoy looking back at old videos of Marissa and seeing how cute and cuddly she was back then. Not that she isn't cute and cuddly now but, well, I think you know what I mean.

This series of videos is from when she was about 9 to 12 months old. The first videos you see of her wearing her PMV (purple speaking valve) are right around the time when she was able to tolerate wearing it all day, when she was about 10 1/2 months old. The last video is just after she turned one. I just love listening to her little voice from back then, when she was still discovering that she even had a voice. She has amazed us with her vocal and verbal ability. For someone who didn't even have a voice until she was almost a year old, she is doing phenomenally. We are so proud of her!

Make an on-line slideshow at www.OneTrueMedia.com

Consequences?

How do you deal with a kid who does not care about consequences for their bad behavior?

Just to be clear right from the start, Marissa does understand the concepts of good and bad behavior and good and bad consequences for such behavior. She just doesn't care. It would be a totally different situation if she did not understand but she does.

She has been exhibiting "terrible two" behavior and attitude for about the last year. She throws toys and tantrums, hits us, disobeys us while looking us directly in the eyes and just generally tries to assert her independence. The most frustrating thing is when she throws stuff and hits. Drives me CRAZY!! We have discovered that, a lot of the time, she throws and hits because she is excited and does not know how to channel her emotion any other way.

For example, just this morning, Jeremy got her out of bed and she came running into our room yelling "Mama Mama!!!" like she was excited to see me. I got her up in my lap and asked her for a hug and a kiss. She hugged me and when she pulled back, she put both her hands up like she was going to slap me. I gave her a disapproving look and she did not slap me. But then, with a big grin on her face, she reared her hand back and shoved her finger into my eye! OUCH!! All because she was excited. After the pain wore off enough, I picked her up and told her that I understood she was excited to see me but that it was not OK to hurt me. I asked her to say sorry and she did. Then about three minutes later, she cold cocked me upside the head with her puppy that has big bean bag feet. I still don't know why. UGH!! I understand this behavior is a little different than her just blatantly disobeying but it is still frustrating.

So, back on topic about when she directly disobeys. This kid does not care about consequences. At. All. We have tried everything. Time out, taking toys away, not allowing her to watch her videos or listen to her music, spanking. Yes, I believe in spanking. Of course, only when it is not done in anger and only as a last resort when nothing else will get her attention. But even that does not get her attention! She will cry for a moment and then be fine and go right back to her bad behavior. She even laughs when she is in time out.

Negative consequences are given to adjust negative behavior. This kid will literally watch you as you take all of her toys away, turn off the music or video and not give a rip. She will sit in a completely empty room with no toys or anything fun and be perfectly happy to play with her fingers and toes and talk to herself. I guess I should be happy that she is resourceful and does not require things to entertain her, but it sure is frustrating when NOTHING makes an impact on her to make her change her bad behavior.

We do give her positive consequences when she behaves. For example, if she puts her upstairs toys away in the morning before we go downstairs for the day, she gets to watch Elmo or Signing Time, which is equivalent to heaven for her. If she cooperates during her feeding or her cares, she gets to go outside and play. She receives positive reinforcement all the time from us for the good things she does.

But she seems to thrive on the bad behavior. Admittedly, Jeremy and I do sometimes react in a way we shouldn't, out of frustration. We will lose our tempers with her, more often than we should. We know she likes to see if she can get a rise out of us. We understand that we are just fueling her bad behavior when we do this and it is something that we both work on every day. But what are we supposed to do when we are doing all the right things and she still does not care about the negative consequences? How will her bad behavior change if she does not care?

I have a theory that she is indifferent to negative consequences because she feels she has some control over the situation that way. I think Marissa has been negatively impacted enough by her rough start in life by people constantly manipulating her and poking and prodding her. She had no control in those situations and there are certain times she still has no control when we need to do things to her and for her. If that makes any sense? We do try to involve her in things like her cares and feedings by having her get things for us and such. But I still think she feels a lack of control in these situations, so her not reacting to punishment is her way of "being in control". I don't know if this makes any sense. ???

I mostly typed this out of my own frustration this morning (this blogging thing sure is a good outlet!! :). But I would like to know if any of you out there have any tips, advice or best practices you could share. Do any of you have a kid that could care less about negative consequences? How do you handle things?

*Edit* As I was about to hit publish, she came up to me and threw her Dr. Seuss book at me! UGH!!!

Kinda Quiet

That is the theme of our lives right now. Which I don't mind one bit. Everyone living the special needs life knows that quiet and boring is good! And, because I am a little superstitious, I hope I didn't just jinx us by saying that.

We have had a couple of weeks of no doctor's appointments and only a couple of therapies. We have been making the most of our summer and spending a lot of time outdoors in parks, in the back yard, at the zoo. It has been really fun. And it has been interesting to not have a schedule full of doctors, nurses and therapists.

So, since I don't have much to post about, I will just show you all a bunch of pictures of our summer fun over the last several days.

Ready?

Miss Marissa ready for a visit to the zoo with our friends Milo and Faith and their parents. By the way, this is the only time she wore her hat!

A big kiss for Daddy before visiting the giraffes.

Not too keen on the giraffes being so close. We gave her a cracker to feed the giraffe and she threw it at him, poor guy!

Mr. Milo getting ready to feed the giraffe

Marissa with her new stuffed monkey. She decided this one was much safer than the real thing!

Poor Milo getting a poke in the eye from Rissa. What is it with these two and their fascination with each other's faces? Remember this?

Group picture!

Jeremy got this really great close up pic of the bear who was sunning himself on the rocks. Anybody want to tell him he has a little bit of food on his mouth? Yeah, neither did we.

This giraffe was having a great time licking the pole. I wonder what flavor it was?

Jeremy decided to find out for himself what flavor the pole was. He said it tasted like spaghetti. Who knew giraffes like spaghetti??

After the zoo, we headed back to our place for a cookout. Here are the kiddos watching a video.

Just had to throw this video in because I thought it was cute!

Milo and Faith playing in our kitchen.

Apparently, the kitchen was the happening place. As you can see, it was very difficult to get a good photo of this group. I guess it is par for the course with toddlers!

We've been to the park several times this summer but this time, Marissa decided all she wanted to do was run around the table.

And run...

And run....

And run some more.

Still more running (note the piggy tail flapping)

Finally stopped for a rest under the bleachers. And then we had to leave because she fell and got her first scraped knee. A true kid rite of passage. :(

On Monday, Jeremy decided to take a day off of work. It was a little chilly outside that morning so we decided to take Marissa to the mall and let her run around the play area.

Her favorite part?

THE SLIDE!!!!

We were so glad to have some special visitors a couple of weeks ago. Jeremy's and my classmate, Kendra, and her sweet daughter, Miss A came to see us. It has been 16 years since we saw each other, literally since we graduated high school! They currently live in Maryland but are trying to move back to Colorado. We hope they can do that real soon. Regrettably, we did not take pictures during their visit with us, but if you go to Kendra's blog, you can see pictures of her awesome family of six!

And that, my friends, is what we've been up to lately.
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Please keep Rene and her family in your prayers in the next few days. A year ago tomorrow they lost their sweet boy Tommy. Go to her blog (bring a box of tissues before you do) and watch the sweet video Tommy's Mommy made in his honor. Go to the next post down and read the Heart poem. Pray that they are able to find peace and joy in remembering Tommy.

Tommy loved bubbles. Rene has asked that, if you can find the time, you go outside tomorrow at 7:00 pm ET and fill the sky with bubbles for Tommy's "Angel-versary".

Thanks.

Shine

Many of you special needs parents, if not all of you, know about Signing Time. Marissa loves these videos, as I have mentioned in the past. I really think her vocabulary and signing ability has taken off like a rocket since she started watching the videos several months ago.

Rachel Coleman is the host of the show and she writes the songs that go along with the programs. If you know about signing time, you know Rachel's motivation behind doing the Signing Time program. For those of you not familiar, Rachel's first daughter, Leah, was born deaf. They found out when she was one year old and started signing with her. Rachel and her sister, who has a son one year younger than Leah, came up with the idea for Signing Time. They did research and found that teaching babies and young children to sign has many, many benefits.

A few years later, Rachel became pregnant with her second daughter, Lucy. During a routine ultrasound it was discovered that Lucy had hydrocephalus, spina bifida and a Chiari Malformation. The Chiari Malformation was corrected when Rachel and Lucy underwent a rare in-utero surgery. When Lucy was 9 months old, she was diagnosed with Cerebral Palsy. Doctors told her parents she would never walk, never talk, never sign and would be considered intellectually disabled. Lucy's parents decided to try to prove the "experts" wrong and started signing with her and including her in the taping of the Signing Time shows. Boy, did they ever prove everyone wrong! Today, Lucy is 8, uses a wheelchair, is in a mainstream class at school, and signs and speaks very clearly.

Rachel has written many songs dedicated to both Leah and Lucy. I wanted to share the lyrics of one in particular because it touches on so many things that we special needs parents have gone through and are still going through.

Shine

Sometimes I see you stuck

For such a long time

A daily nothing new

Pretend I don’t mind

With lists of things you’ll never do

Until somehow you do

And you do — you do — you shine

The days and months and years,

they run together

Is it just one day? Or is this forever?

You’ve taught me in your lifetime

More than I’d learned in mine

And you do, you do, you shine

Shine Shine Shine Shine Shine

Shine your light on me

Shine Shine Shine Shine Shine

everyone will see

Shine Shine Shine Shine Shine

I’m so glad you are mine

And you’ll shine in your own time

Well, maybe I’m too close to see you clearly

Or is it now my role to simply believe?

You’re just one of those mysteries

That may never be solved in time

But you do — you do — you shine

And Sammy will do what Sammy will do when Sammy is ready to do it

And Trevor will do what Trevor will do when Trevor is ready to do it

And Lucy will do what Lucy will do when Lucy is ready to do it

And they’ll do it in their own time

Yeah, they’ll Shine Shine Shine Shine Shine

Shine your light on me

Shine Shine Shine Shine Shine

And everyone will see

Shine Shine Shine Shine Shine

I’m so glad you are mine

And you’ll shine, and you shine

Don't always believe the "experts". Keep up the therapies and hard work and let your kiddos show the world their potential. Keep speaking and signing to them, even if you think they aren't getting it. They just might surprise you.

Let them shine.

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I have a prayer request. Jeremy's mom knows a family with a little three year old girl named Maryn. Jeremy and I actually met this family several years ago before Maryn was born.

Maryn was diagnosed in June with an inoperable tumor on her brain stem. Doctor's have given her 9 to 12 months to live. Her parents are searching out all options and have found a clinic in Houston that will allow Maryn to participate in a clinical trial which may save her life. Click on this link to watch a video to learn more about this precious girl.

If you go to her blog, you will find out ways you can help Maryn's family raise the money it will cost to get her this life saving treatment. If you live in Utah, there will be a benefit concert on August 22. If you live in Colorado, there will be a 5k run/walk on August 29th.

Please keep Maryn and her family in your prayers.

Thank you.

How Do I Love My Rissa... Let Me Count The Ways

Disclaimer: I am posting this today mostly as a reminder to myself about all the things that make Marissa great and why my life is so blessed just by having her in it. She and I are having "one of those days" today and I am finding it hard to keep these things in mind. Writing it down for you all to read really helps. My apologies for the incorrect grammar, I didn't really feel like taking the time to make it "presentable". Thanks.

*she always wakes up in the morning with a smile.

*she sometimes wakes up from a nap grumpy.

*hearing her "chirping" in her crib when she wakes up

*when I am working in the kitchen, she prefers to be right in there with me, on her favorite spot ~ the ac/heat vent on the floor.

*when she "talks" and she sounds so grown up

*when she "reads" her books

*when she sings along to songs she loves

*when we say sorry to her for something, she kisses and hugs us

*her belly laugh

*the way she claps and cheers when she hears loud sounds like sirens, fireworks, or loud animals at the zoo, when many kids would be scared and cover their ears

*the way she takes on the challenges in her life ~ with persistence and grace, not getting frustrated too often

*the way she dances, especially when she doesn't know we are watching

*the way she rolls her eyes and looks exasperated when I ask her to do something (she sure is good at copying me ;)

*the way she has to hug and kiss her "Christmas Bear" over and over again before taking a nap

*her feisty, strong fighter's spirit.

*how she puts her upstairs toys away and gets so excited just to be able to go downstairs to watch Elmo or Signing Time in the morning

*how she gets excited over the littlest things like going upstairs, going somewhere in the car, going outside.

*the way she teaches me a different lesson about life everyday

*the way she has made me see God differently ~ in ways I was not able or ready to see Him before

There are many, many, many more but I have to attempt to put her down for a nap now. Wish me luck. And no Mom, we didn't make it to Wal-Mart today, maybe we'll have a better day and be able to tomorrow. ;)

Tidbits

Nothing much to post about right now, but I do want to share a little bit of this and a little bit of that.  Some tidbits, if you will.

I just heard from Dr. P's (Marissa's ENT) medical assistant that she had her twin babies (one boy, one girl) about two weeks ago and the last she heard they were supposed to be home Monday or yesterday!!  I am so happy they are all healthy and doing well!

According to her medical assistant, Dr. P should be back to seeing patients around the middle of October.  She told me they will start scheduling patients sometime around the end of this month or the beginning of September and that we will be one of the first to be called to get an appointment to see Dr. P when she returns in October.  

We have decided that, before seeking the advice of Dr. C in Ohio regarding the inevitable surgery on Marissa's airway, we are going to consult with Dr. P to get her opinion and to see if she can do the surgery.  We felt that it was only fair to inform the doctor who knows Marissa best of the latest development and allow her to put her two cents in on the situation.  We will therefore be waiting about two months before any decisions are made on how to move forward. We are at peace with this.  We realize we just need to be patient and it will all happen according to God's plan.  I will update when I get word of when we will be able to see Dr. P.

You remember when I posted here about the beautiful dresses our friends Elizabeth, Charles and Ashleigh got for Marissa?  Well, I finally got pictures taken of the other dress, so here it is:

Thanks again guys!!

I was so touched a couple of weeks ago to find out that a fellow blogger/special needs and trach mommy put Marissa's name into a drawing on her blog and sent Marissa this adorable handmade dress, along with a handmade bib for her and a key chain for me!!

Thanks Dana!!  You are too sweet to do that for Marissa!  I am going to send you a copy of these pictures in the mail real soon.

I know it may look like she is unhappy in this next pic, but I know what she is really saying (at the top of her lungs) is "I really LOVE this dress!!"  Trust me on this one, I am her mother.  :)

And finally, just a couple of cute Rissa pics from the park the other day:

Have a great rest of your week!!

NICU Reunion

Today we took Marissa to her NICU reunion.  We were able to see a couple of Marissa's doctors and nurses.  There was tent with pictures of the current NICU nurses on a billboard and I was disappointed that I did not see a lot of the nurses who cared for her on there.  They either didn't have their picture taken or they no longer work there.  :(  

But other than not being able to catch up with many of Marissa's great nurses, we had a good time.  We met up with our good friends Milo and Kevin (and their awesome parents, of course! :)

Here are some pictures of the day:

Marissa:  Hey Milo, something's different about you but I can't figure it out."

Milo:  "Here's my nose!!!"

Marissa:  "Yeah great, you have a nose, but something is different about you man.  I mean, just look at your neck..."

Milo:  "There's Marissa's nose!!!"

Marissa:  "OK dude, enough with the noses!!  Ah-ha!  I figured it out!  You got your trach out!! WOW, you look great!!"

Milo and Marissa:  "Something is also different with Kevin.  WOW, he is not on the ventilator anymore!!!  Wow Kevin, you look great!!!"

Kevin:  "Nothing gets past you two, huh?"

The adorable shirt Marissa is wearing was made by Milo's mom, Janay.  On the back it says "I am a neck breather"

This is Dr. Bob.  He is the one who was instrumental in getting Marissa home without having to wait months and months for private duty nursing.  Thanks Dr. Bob!!

This is Nurse Sue.  She was Marissa's nurse quite a few times before Marissa was sent to Denver.  After we got back, Marissa never had her again.  Sad because we love Nurse Sue!!

This is Dr. Mary.  We loved her because she always brought such a calming presence to the NICU.  She re-intubated Marissa after she self-extubated one time.  She asked me if I wanted to step out (watching your baby be intubated is not a pretty sight) but I decided to stay.  She then encouraged me to help out by stroking Marissa's head and let her know she was going to be OK. She helped me feel calm during a very tense situation.  Thanks Dr. Mary!! 

I didn't get a picture of her, but we also saw Nurse Victoria.  Funny thing is, in the entire 2 1/2 months Marissa spent in the NICU, Nurse Victoria was only her nurse once, the second to last day she was there.  But, she was primary for a little baby who shared a pod with Marissa so we were always around her.  Even though she was only Marissa's nurse the one time, she always came over and checked on her.  She really cared about our little girl.  Thanks Nurse Victoria!!

Riss Riss just being her cute little self.

Headed home!!

Have a great weekend everyone!!