"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Friday, December 31, 2010

One Last Post... For 2010

Hey folks, we're still here!

It's been a crazy busy month and I just wanted to show you some pictures and a few videos from our wonderful, hectic, crazy, awesome Christmastime. So here goes:

Christmas morning sunrise, on top of Colorado Monument, Grand Junction, CO

Jack Daniel's Coffee!!

Aunt Julia's homemade cupcake topper hat!

A Christmas cyborg, sent back through time, to wish a bright, joyful, Merry Christmas to all...

... and to all a good night!!

My baby brother Brian, who, this very night, became a father for the very first time!

Marissa's new favorite activity: Stoma Farts!

Tuesday, November 30, 2010

Bah! Humbug!

I don't really know why, but I have found myself in a rut lately. I just haven't felt like blogging, or reading other people's blogs for that matter. I know, it sucks for me to say that, but I'm just being honest. I hate it. I love all my blog friends and I truly love all your kiddos and I enjoy reading about them. But sometimes the reality and sadness of this special life overwhelms me and I just can't bring myself to read. Please be assured that it is only a temporary hiatus. I love you all too much to stay away for too long. Also, please never doubt that I pray daily for you and your kiddos. So, I will be catching up on all your blogs soon. Sorry I have stayed away so long. I know how important this support system is.

I know it is still early, but I am having a particularly hard time getting into the Christmas Spirit this year. I don't know why, but it is bad enough that I actually considered not putting up decorations or a tree this year. Don't panic, Mom, we are going to. We realize how important it is for Marissa. Something so awesome happened with Marissa and Halloween this year. She got so excited and actually understood the meaning behind a holiday for the first time. It wasn't even about the candy for her, obviously. It was the pure joy and spirit of the holiday that was so fun for her. So we can't deprive her of that same joy at Christmas.

As we speak, I am listening to Christmas music, trying to get in the spirit. Christmas is one of my favorite holidays and I love the lights, decorations, and gifts, family and friend gatherings, songs, and such. Of course, more than that, the only gift that really matters, our Savior, Jesus Christ. But I am just having a hard time this year. Maybe it is the fact that every year, it hits the stores earlier and earlier. This year, Kohl's had a big section of the store set up for Christmas in the middle of September! It was still officially Summer! Insane!

Maybe it is all the hype that surrounds Black Friday. It is disheartening to know that some people actually skipped Thanksgiving, a time they should be gathered around family and friends giving thanks for all the true blessings in their lives, to camp out in front of stores starting Wednesday last week, just so they could get good deals on stuff. Things. Trinkets. Sad.

Maybe it is this story from Black Friday. Or this one. Or maybe this one. C'mon people, really? Is it worth it? All of that crap just makes me lose my faith and hope in humanity and steals my Christmas spirit.

But I am trying to get it back. I think by putting up the tree and the decorations around the house, I will be able to see the joy in my little girl's eyes and that will bring the spirit and joy back to me.

I hate that this post has turned into a whiny, piss-n-moan post about what a bad mood I'm in lately, so I will stop all that now. In the spirit of Christmas, I decided we all should break out our special Christmas PJs and I took a few pictures of Rissa and Jeremy in in theirs:

Elmo, of course! She was so excited when she saw them. She gasped with a wide open mouth and said "WOW!!!" It was adorable!

I guess I would be remiss if I didn't update on how Marissa is doing in school. She is absolutely loving it and is doing so well fitting in with her classmates and teachers. I take her to school each day and the bus brings her home. She has already brought home several awesome art projects she completed. She just loves everything about school, and we are so happy and proud of her!

Monday, November 8, 2010

School Days

Marissa made her big debut at school today!

I don't think I followed up on this post, but we had her Child Find evaluation and IEP and she qualified for all services. While she is not globally delayed, like she was a year ago, she is still quite delayed in many areas. Plus, she really needs the social interaction with her peers that has been lacking all these years. So today was the day! HOORAY!

Sporting the new Elmo & Zoe backpack Miss Janay made her!

Waiting for the teacher to come get us for the start of school. We were the first to arrive!

I went to her first day with her so I could get a feeling for what her day will be like. Tomorrow, though, she will be on her own. What a bittersweet experience! I know she will do fine. She's already made some cool little friends and enjoys playing with everyone and everything.

We are so proud of her taking this next step!

Sunday, November 7, 2010

Better Late Than Never

So here's Halloween, finally!

A couple of weeks ago we got together with our trach family and had an awesome party hosted by Milo and his Mom, Janay. It was so good to see everyone. Marissa and Faith got to show off their newly naked necks and everyone had a great time!

For Halloween, we went to our friend's house and had a party/costume parade/trick-or-treating. Marissa just loved being in her costume but was a little taken aback when she saw everyone was dressed up! Batman with his mask really kind of freaked her out for a while.
Making friends with Junie B. Jones

Jeremy and I just loved watching Marissa trick-or-treat. She had so much fun going from house to house, holding up her little bag, and yelling "TRICK-OR-TREAT!!" as loud as she possibly could! She was also very polite and said "thank you" at every house. She had so much fun, she has talked about trick-or-treating every day for the last week!

Currently, we are preparing for a very big week here at Rissa's house. More on that later...

Wednesday, October 20, 2010

She's a Hippie Chick...

Marissa had an appointment with her orthopedist about her hips yesterday. We were actually supposed to see her in July, but due to a very busy Summer, we just now got around to it. If you recall from a post I wrote back in January, Marissa has hip dysplasia and the ortho wants to keep an eye on it. Back then, Marissa was popping her left hip out of place. Since she started back in PT in February, she has not been popping her hip. Yay! Through PT and wearing her AFOs, her muscles, joints, and ligaments have become stronger.

First, I was very impressed with how Rissa handled the x-ray and appointment yesterday. I have explained to her in the past that the x-ray is just a big camera and that we are just taking pictures of her and there will be no owies. She has always screamed and cried through every x-ray ever taken of her, and that is a lot! Yesterday, she finally believed me and even volunteered to get up on the table. She even yelled "cheese!"! No tears! Then, when it was time for the doctor to examine her, she still didn't cry! I am so glad she was able to take this appointment in stride and realize no one was going to hurt her.

The doctor said she is pleased with how Rissa presented clinically. I told her about how she is not popping her hip anymore. She examined her, feeling her hips as Marissa moved her legs in different ways. The doctor said she feels so much stronger. That's great news!


She did say she still has some concerns when looking at the x-rays. She showed me how her right hip is properly formed, with the ball of the leg bone fitting correctly into the cup of the hip, and how the cup is also properly formed, with the ability to keep the ball joint in place. But the left hip cup is more open, allowing the ball joint to slip out. Not good.

She did say that the right hip has "remodeled" itself quite nicely since her last x-rays. She said that kid's bodies, up until the age of four, have the ability to remodel their joints and bones to a certain extent. Very interesting! So she wants to see Rissa again shortly after she turns four, in March or April. If her left hip has not remodeled itself by then, the doctor said we would "have concern that it won't and we'll have to look at other solutions". Which means surgery. Blech.

I just can't think about that right now. Our hopes and dreams for Rissa's next Summer include getting her trach stoma surgically closed in May (yep, it is not going to close on its own. Bummer.) so there will be plenty of time for her to swim, dig in the dirt and sand, and just generally have a "normal" Summer. It definitely does not include her being locked in a cast for quite some time, recovering from hip surgery. Please pray with us that her hip remodels itself in the next six months and we can forget about surgery. Our kiddo deserves to finally get on with the business of just being a kid, don't ya think?

Friday, October 8, 2010

A Good Problem to Have

Marissa is scheduled to start school Monday, November 1.

That is, if she still qualifies.

Last year, when we did Marissa's IEP in December, she was still pretty delayed. She was only 2 1/2 and she was behind her peers enough that she qualified for all services, 4 days a week, 2.75 hours a day. She was not very verbally communicative and did not really understand how to follow directions well. I knew that we would not be enrolling her in school until this Fall because of the hopeful decannulation. Therefore, we would need to reassess her abilities and needs, being as it was so long ago when she was first evaluated.

So, when I called the Child Find representative for our school district this week, I was not surprised when she asked me to update her on how Marissa has been doing in the last year. Through speaking with her about how Marissa can now speak in 3-5 word sentences (she is still unintelligible a good portion of the time but there are several occasions where she speaks very well and is understood by others), and can follow not only simple directions, but complex ones as well (Jeremy asked her to get her milk. She came into the kitchen from the living room, opened the fridge, got her formula out, and handed it to Jeremy.), we figured out that she may not qualify through the Child Find program for school. She can say her ABC's, count to thirty, and knows the different colors and shapes. She sings songs with mostly the correct lyrics, and dances like no one's business.

The representative did tell me that, if she does not qualify through the Child Find program, she will still probably qualify for school through the "at risk" category. This means that she functions high enough to be amongst her peers but is at risk for falling behind. In this case, she would be able to be enrolled in school, but would be put on a waiting list. We would have to wait for a child to age out of the program for her to be able to start. We do not know how long of a wait we would be looking at.

So, we are beyond ecstatic to hear that our girl may be too "in step" with her peers to attend school funded through the government right now, but it sure would be nice if she could start school sooner, rather than later. One of her biggest issues is the fact that she has not been socialized like other kids her age. We have kept her isolated through the Fall/Winter months because of the trach making her more susceptible to illness. She does not necessarily know how to play with other kids her age. She does not know how to share or how to interact with them. So, if she does not qualify for schooling through the Child Find program and we have to wait to enroll her in school for the "at risk" program, I will be seeking out avenues of social interaction for Marissa, whether it is a play date group or a formal preschool, until we can enroll her for good.

We are scheduled for another Child Find evaluation and IEP on Oct. 29th and that will determine what services, if any, she qualifies for. I'll be letting you know the results of that meeting as soon as I know.

It is excellent news that Marissa may not have a cognitive deficit big enough to qualify her for these particular services. That is something we have worried about since we first learned of her brain anomaly at 19 weeks gestation. At this point, it is a good problem to have and we will only work that much harder to find a suitable situation for our girl.

Saturday, October 2, 2010

Left You Hangin'

Sorry about that. I know Rissa got her trach out almost two weeks ago and I have not updated
since. We have been pretty busy. I'll catch you up on what we've been up to lately.

Rissa has been doing awesome!!! If it weren't for the fact that we have to change the dressing on her stoma every day, she would not know anything was different. She is just going about her "Rissa Roo Business" as usual. In fact, just tonight, we decided to try letting her sleep without her pulse-ox for the first time in... well... her life! She and I started to catch a cold on Wednesday last week but her symptoms seemed to have dropped off. Hooray for that!

Her stoma is still open. Honestly, it really hasn't gotten any smaller since the morning after decannulation. Although, we do think it may be closing, ever so slowly, from the inside out. But it is still open and we still have to keep it covered, which is a problem in itself. Marissa has such sensitive skin that the tape leaves red, irritated marks on her throat. We have tried gauze, paper tape, Band-Aids, and Tegaderm. If any of you out there have any suggestions, I'd be glad to hear them!

Dr. P says her stoma might take months to fully close, and it might not close at all. She says she doesn't like to consider surgically closing the stoma until a year post-decan. We had a follow-up appointment with her yesterday and I asked her if she would consider surgically closing it next May if it hasn't closed on it's own by that point yet. It is very important to us that Marissa be allowed to experience a normal Summer, complete with playing in the sand and dirt, and swimming in the water, without us protecting her neck all the time. Dr. P said it is definitely doable and she will consider it if the time comes.

Speaking of yesterday's appointment, Dr. P said Rissa is doing so well that she doesn't need to see her for the next six months!! Isn't that awesome? So incredible!

I have been taking care of my friend's son and it is going really well. Both Rissa and I enjoy having him to play with during the day. Rissa has really handled it all very well, showing very little jealousy. She loves helping me with him and I really think this was a good move for her.

We are hoping to enroll her in school by the end of the month. We are so excited to move on to this next step. Rissa is so ready to meet new friends. We think she will do so well!

I thought I would end this post by showing you a few fun pictures of Rissa in her old infant car seat, then and now.


And now!

Hear no evil...

See no evil...

Speak no evil!

Big girl!

Tuesday, September 21, 2010

Eulogy for a Trach

It was a love-hate relationship.

When it came into our lives, almost three and a half years ago, it sounded like the ugliest, most foul word we had ever heard. Tracheostomy. T-R-A-C-H-E-O-S-T-O-M-Y.

A silicone tube that would be placed in a surgical opening in our daughter's throat. An artificial airway that would be secured in place by cloth ties constantly around her neck. A tiny little piece of medical technology that would take so much time and care that we felt as though we paid as much attention to it as we did to our daughter herself.

But we quickly realized that this little tiny piece of silicone would allow our daughter to breathe because she was not strong enough to do so on her own. It would allow her to leave the hospital, two and a half months after she was born, and come home to finally start being part of our family. It would allow her to grow and develop and get so strong. It would save her life.

This tiny, light weight little thing would become such a heavy presence in our lives. We had to learn how to care for it, keep it and the site clean, and what to do in an emergency, life and death situation. We had to recruit a small army of family and friends to learn this stuff as well. We could not go anywhere without a suction machine and emergency supplies. Heck, we couldn't even switch rooms in our house without taking along enough stuff to stock a hospital room. Having it meant Rissa did not filter the air she breathed normally, so she was much more susceptible to infection and illness. We had to be so vigilant as to make sure nothing fell into it, causing her to aspirate. We had to walk a fine line between keeping Marissa humidified enough, but not too much, causing her to be "juicy" and require suctioning all the time. We had to keep an eye on it all the time to make sure she did not accidently take it out, thus threatening her own life.

There were many times I resented the trach. I resented the fact that Marissa depended on it so much. I resented the fact that she would never be "normal" because of it. I resented the isolation it brought. I resented how people stared at my precious girl because of it. I resented the "club" we had been forced to join because of it, even though this club brought so many awesome people into our lives we would have not known without it.

In it's final days, I found myself growing sentimental about, even thankful for the trach. It changed our lives so drastically. Looking back, it made Jeremy and I stronger too. It forced us to grow up and not take life for granted. It brought to light all the trivial nonsense that seemed so important in our lives before. It made us see our daughter's inner beauty, which radiates from her like the brightest sunlight, every day.

In the end, of course, we are glad to see it go. But we are also acutely aware of how we are all better people because of it.

Thank you, Tracheostomy. You served us well.

Mr. Trach
May 9, 2007 - September 20, 2010

P.S. I did two posts at once, so make sure to scroll down to the next post to see more pictures and another video!