Rissa Roo and Her Family Too!

The Case of the Missing Blogger

2011-12-29T10:37:00.011-07:00

Hi friends! Remember me? Yeah, ummmm... Hi! You may have noticed I have been absent lately. I'm back to explain the reasons for disappearing on you.

First, my life has become wonderfully busy. Rissa is four, almost five and attending preschool again this year. Four days a week, three hours a day, in the middle of the day. My goal every morning, starting about 9:00, is to make sure she is ready for school by 11:30. Why 2 1/2 hours to get ready for school, you may ask? My extremely busy-can't sit still-always into something she shouldn't be little Rissa is a handful, especially when she knows she will be going to school. I guess there's just something about knowing she has somewhere to be that makes her want to create as much havoc for me as possible. Add to that the fact that I am still watching Sully during the weekdays. He is now 18 mos., is very mobile, and also loves to get into all the things he shouldn't. He and Rissa also love to fight over toys. There are some days when I think they don't actually play with any toys because they are too busy trying to get the one the other has. Throw in the (thankfully) occasional doctor's appointment or other activity of some sort, and all I want to do with my spare time is veg and watch Netflix!

Second, pretty much all of the people whose blogs I follow, and those who follow mine, are friends with me on Facebook. It just seems easier to type out a quick status update and read other's statuses rather than compose a whole blog post.

Third, and this is probably the biggest reason, our life has become strangely... normal. Don't get me wrong. By no means do I consider the life that Rissa, Jeremy and I live to be normal. What is "normal" anyway? What I am trying to say is that Rissa has overcome a great majority of the issues that were present when she was born. She still has her g-tube, still doesn't eat very much by mouth, still has some physical issues (hips), and still has some developmental delay. But she is more "normal" now than she ever has been before. For this reason, I just don't feel the need to blog about my daily life like I used to. I think it is quite average and, honestly, a little boring.

When I first started, I had several reasons for blogging. First, I needed to connect with other parents who were going through similar things I was at the time. Life with a fragile, immuno-compromised, technologically enhanced baby is so isolating. In the first year of Rissa's life, I found myself, a natural "people person", drawing away from others. I needed to keep her healthy, so we stayed in the house more often than not. But it just became so difficult to have to explain to others what was "wrong" with my daughter. Exhausting, really. So I avoided social situations, probably more than necessary. When I started to connect with you guys who actually had a clue what trachs, g-tubes, and AFO's were, among other things, I couldn't believe how much I started to feel like a human being again. Connecting with others who understand what we are going through, no matter our trial, is essential for our mental health.

I needed a good way to communicate with all my friends and family members; a good way to update them on how Rissa was doing; a good way to share pictures and videos with them. Blogging was a great way to do that! Even though I have been admonished recently by a few family members for not blogging regularly, those same people are on Facebook with me, and I feel like that way of updating them is more efficient and less time consuming. Sorry Dad & Arnie!

I also wanted to document this new life Jeremy and I were thrust into. I wanted to look back and remember all that we had gone through, all that we had accomplished, all that we had survived. More importantly, I wanted something to show Marissa when she gets older. Something to show her how far she has come, how hard she fought, everything she overcame and survived. I want her to be proud of who she is. By showing her all that happened in her first few years of life, she can hopefully feel a sense of pride in where she is at that moment.

Blogging has been a great way for me to vent and sort out all my inner feelings about being the mom of a special needs child. There is a lot to be angry and bitter about in this kind of life. There is a lot to grieve and be disappointed in. There is also a lot to find joy in, and a lot to give one perspective about the truly important things in life. Blogging became a journal for me, a way to write down how I felt about my new normal. Good, bad, and ugly.

Please don't misunderstand me and think this blog is finished. It is not, by any stretch of the imagination. I will still post from time to time, mostly when Marissa has something big happening in her life such as surgery, first day of Kindergarten and such. I thank all of you for sticking with us, cheering on and praying for our sweet girl. I'll be back, just not with the frequency I used to.

And, at the risk of this post sounding like a commercial for Facebook, if any of you out there would like to keep up with all the latest Rissa happenings and I'm not blogging enough for your taste, you can find me on Facebook (Alicia Cortez). Send me a request! There are also so many groups I am a part of on Facebook, so many ways to connect with other special needs parents. And, many businesses for special needs products, like g-tube pads, people have made pages for on Facebook. Facebook is AWESOME!!

OK, that really was a commercial for Facebook. Maybe I can convince them to pay me for advertising?

I leave you with the cutest school picture ever taken...

First Decanaversary!!!

2011-09-19T22:56:00.014-06:00

Today marks one year ago that we yanked Marissa's trach. She has done phenomenally well without it, and even though her stoma did not close on it's own and required surgery to close it in May, it's absence has given us all such freedom. She was able to go to school last Fall when she wouldn't have been able to with her trach. We have been able to go where we wanted, when we wanted, without packing up tons of equipment and supplies. This Summer, after the closure surgery, we were able to introduce her to playing in water. She had an amazingly awesome Summer, all because a little piece of silicone was removed from her neck a year ago today.

Speaking of Summer fun, I have to show you all pictures of some of the things we did.

Playing on the water slide with Uncle Brian & Aunt Julia. This was the best purchase we have made in a long time. Rissa was so incredibly happy to be able to splash, slide, and swim.

Tubing at the lake in Grand Junction in July. We were there for my little brother's wedding and this was her first time in an open body of water. She was ecstatic!

Swimming in a real swimming pool for the first time, at the age of four!

Splashing at Uncle Wilber's Fountain!

Playing on the rides at Santa's Workshop at the North Pole!

Happy First Decanaversary, our sweet Rissa Roo!

Our Big, Dumb, Not-So-Fun Adventure

2011-08-04T08:52:00.004-06:00

**ETA** This all happened yesterday but I couldn't post until today because our internet was down.

So... I had a great idea to entertain the kids this afternoon. They were both going a little crazy and I decided it would be fun to take them across the street to the movie theatre, which has a cool water jet fountain for them to run around in. It was about 78 degrees but very sunny and humid because of the massive rain storm we had yesterday and last night, and I thought this would be awesome fun for them. So I started to get them ready.

I stripped Rissa down to her diaper, (yes, we are still working on potty training **beating my head against the wall**, but that's a story for another time) took her out on the back patio, and got her sprayed with sunscreen. Next, I got Sully out there to do the same. Before I could squirt the first spray of sunscreen on him, Rissa reached up and shut the backdoor. A cold shock of panic immediately ran through me, as I realized the door knob was locked from the inside and I had no keys and no phone. It was about 2:15 pm at this point. Sully's mom comes to get him at 4:30 and Jeremy doesn't come home until 5:00. AAAGGGHHH!!! I sat down on the patio swing for a moment, trying to figure out what we were going to do.

Really, the only thing I could do was take the kids, Sully in a diaper and t-shirt and Rissa in only a diaper, all three of us with no shoes, and knock on neighbor's doors, hoping they were home and would let us use their phone. We went across the street and knocked on the door. No answer. We went back across the street and up one house and knocked on the door. No answer. I knew our retired neighbor to the back of us was probably home, so we walked back down the sidewalk and around the corner to his house. Luckily, Larry was home. He let us in, gave the kids cookies and drinks and let me use his phone to call Jeremy. We had a nice little chat about the state of the Union while Sully sat there calmly and Rissa ran around Larry's living room like a crazy woman.

By this time it was 2:45. Jeremy went to his boss and said "My wife locked herself and the kids out of the house". Almost before he could finish what he was saying, his boss said "GO!". His boss is the absolute best! We left Larry's house and came back to our backyard and sat on the patio swing until Jeremy let us in about 3:15. Whew!!

We were so lucky in so many ways. It wasn't too hot or too cold, it wasn't raining, both kids had fresh diapers, we had sunscreen, and we had a very nice neighbor to take us in during our time of need. Even though it was a pain in the butt at the moment, we can all laugh at the situation now, because it could have been so much worse. Now I have a very funny story to tell.

And now I am going to have a beer. Or three.

I put the kids in a bath to cool off and to wash the sweat and grime off. As you can tell from the water coming down the outside of the tub, they had a great time!

It Sucks

2011-07-28T17:56:00.003-06:00

Well friends, we went to the orthopedic surgeon to look at Rissa's hips again today. It looks as though surgery to correct the dysplasia in her left hip is on the horizon for next Spring. As I have blogged about before, she has Developmental Hip Dysplasia. If you look at the four bullet points where the risk factors are listed, she fits all four. The cards are stacked against her. Incredible!

There is a possibility that she won't need surgery. The doc explained to me that kid's bones, up to the age of four, are still developing, are pliable and moldable, and have the potential to form further. Marissa's left hip socket does not form a complete cup, thus allowing her hip to pop out of place. Up until the age of four, she had the potential to still form the socket properly. She is now almost four and a half. However, the doctor says her bone development seems to be delayed by six months to a year because both her hip sockets have developed even more in the last six months since we saw her last. The doctor wants to give her another six months or so, to see if she can develop the left socket more completely. Finally, one of Rissa's delays works in our favor! The doc said it is possible for her socket to form enough to avoid surgery, but pretty unlikely because of how open her socket is right now. So we really have to prepare our hearts and minds for an intense surgery in the Spring.

The surgery performed would be a Pemberton's Acetabuloplasty. Mouthful, I know. As simply as I can put it, the doc would take a piece of bone from another area of Rissa's hip and use it to construct a more complete socket. If that weren't grueling enough for her to get through, she would need a gnarly spica cast for at least six weeks. Holy $***!

We are going to see the doc again in February to determine the final word on if she needs the surgery or not. Because of Rissa's awesome Summer experience for the first time in her life this year (which I promise to blog about soon with a lot of pictures), I did not want her to have the surgery at the beginning of the Summer, when school lets out, only to be stuck in a body cast for the majority of Summer. So, if she needs the surgery, we will schedule it for sometime in March, after her birthday. We will take her out of school for the year at that time, which is OK by us, since it is only preschool. That way, she should be fully healed and ready for a fun Summer.

I hate having to think about this, but I know in the end, if she does need the surgery, it will serve in her best interest for the rest of her life. My mom had a hip replacement several years ago in her fifties and it turns out, she had Developmental Hip Dysplasia. It was also in her left hip, just like Rissa. For several years, I have had pain in my left hip, and my sisters have as well. So, this obviously runs in the family, and if we had all known about it when we were younger, we wouldn't be having the problems we are now as adults. At least we can allow Marissa to have the best chance at not having these problems when she grows up.

But, it still sucks.

Discharged!

2011-06-15T16:03:00.002-06:00

I was sure this day would never come. Not in a million years. But...

Marissa was discharged by her ENT, Dr. P this morning!

We are over five weeks post-op since her stoma closure. She has been struggling quite a bit with the suture material that was used and stitches keep festering, pus-ing up, and popping out of her skin. But Dr. P says we just have to wait it out until she gets rid of them all or they dissolve. I'm cool with that, but just tired of her neck being an open sore all the time. Oh well.

So, back to the discharge... If you would have told me four years ago that, halfway through 2011, Rissa would no longer need the services of an ENT, I would have looked at you like you were from another planet. I am so thrilled at how far she has come, she amazes me! It is a little sad though, as Dr. P is our most favorite Dr. that Rissa sees. She has taken such good care of Rissa. Honestly, I believe Rissa would not have her trach out right now if it weren't for her. She moved forward when others were content to let things be. She has been such an integral part of Rissa's life and development and we will miss seeing her. I'm glad we are friends on Facebook so we can keep in touch.

And now, a cute Rissa & Sully pic to wrap up this post...

Sully is turning the big NUMERO UNO on Sunday!! Happy Birthday, Sully Man Bud Bud! We love you!

Blessed

2011-05-29T18:22:00.002-06:00

Having Marissa's trach stoma closed has brought us so much freedom. We are, once again, finding out how much we are blessed.

We are finding so much joy in the small things that we could never do before Rissa got her trach out, such as splashing in the bath, tubing down the Colorado River this Summer as part of my little brother's Wedding Extravaganza Week, and her newest backyard toy... the inflatable water slide!!

Make an on-line slide show at www.OneTrueMedia.com

Can't you just feel her joy?

Surgery Done and We're Home

2011-05-10T15:48:00.004-06:00

Rissa had her surgery yesterday and came through it just fine. Everything looked great this morning so the doctor discharged us and we made it home by 11:00 am.

She is in a little pain, but more than that, she is pissed. She won't let us even change her diaper without throwing a major fit. She doesn't want to be touched for any reason. For an entire hour before we left the hospital she was making mean faces, clenching her fists on her hips, and saying "Stop! Don't ever again!!", even though we were giving her space. I totally understand where she's coming from. If I were her, I would be mad at us too! I just hope she'll come around and forgive us quickly.

Thanks for all the well wishes and prayers. Keep sending them for the coming days. As always, thanks for checking in!

Happier Days...

Closure

2011-05-04T06:17:00.004-06:00

Finally. Exactly four years to the day that Marissa's trach was placed, we will have closure.

Marissa will have surgery to close her trach stoma on Monday, May 9. Although we are disappointed it never closed on it's own and we are anxious and stressed about the surgery, we are also very excited! She will finally be allowed to have a Summer like so many other kids her age. She'll be able to get in the swimming pool, play in the dirt and sand, and splash in the bathtub. Finally, she won't have snot coming from her neck all the time. She won't have a permanent red, irritated area on her neck caused by the tape and gauze we use to cover her stoma. We won't be worried about her going outside without a covering on her neck, in case a strong wind comes by and blows dust and dirt at her.

We hate that our baby has to undergo one more surgery (this will be her 7th so far with possibly more to come) and deal with the pain and recovery, but we can't wait to see her splash in the water, carefree like she should have been this whole time. We'll finally close this chapter in our lives. And that, my friends, is an awesome feeling!

I will try to update the blog and Facebook when I can. As always, your prayers, good vibes, and thoughts are greatly appreciated.

See you on the flip side!

Every Day is a Dance Party!

2011-03-16T17:53:00.002-06:00

Make video montages at www.OneTrueMedia.com

'Raining Sunshine' by Miranda Cosgrove from Cloudy with a Chance of Meatballs

'On My Way Home' by Nina and the Imagination Movers

To Our Girl On Her Fourth Birthday...

2011-03-13T08:49:00.005-06:00

Four years ago tonight, you came screaming into our world, hardly making a sound. You have taken us on a ride that we never imagined in our wildest dreams. Scary, thrilling, tearful, amazingly fun, hilarious, and awesome. We can't even remember life before you. And honestly, we don't want to. You add a spice to our lives that we just can't do without now. At times, it can be "too picy" as you like to say, but we need it. We thrive on it. Thank you, Little One, for changing us for good. We love you so very much.

Make an on-line slide show at www.OneTrueMedia.com

My favorite line... "I lost every time I fought her. Yeah, I lost every time" So true!

A Really Good Cry

2011-03-07T06:53:00.002-07:00

Last night, I was overcome with emotion watching, of all things, the movie, Knocked Up. I know, I know, call me crazy. But toward the end, when she is giving birth and he is there beside her, and the baby is born and cries... well, I just fell apart. Jeremy had already gone to bed and I just sat there and bawled my eyes out.

I think I was releasing emotions I had not let go of for a long time. I hadn't really sat down and thought of the night she was born in a long while. Everything came bubbling to the surface when I saw that fictional baby being born. Don't ask me why, I don't know. But, even though Marissa's and my birth process was totally different, I just felt the release of emotion when the baby was born and everyone was happy and healthy. I don't know if it was the fact that I wished that was our story, or what.

My girl is going to turn four years old on Sunday. I'm not ready. I'm not ready for that day to be here. I'm not ready for her to be that old. I'm not ready to contemplate how long ago she was helpless, hurting, and fighting for her life. She has been through so much, with so much more to come. I feel like she's lived a lifetime and yet it also seems like yesterday she that was born. She has had almost every part of her body operated on or manipulated in some way, yet she is as normal as can be. She knows no different. She amazes me.

Anyway, enough of my rambling. I hadn't made a montage in a while so I thought I would get one together in honor of her upcoming birthday. The first photos are some of my favorite pictures from when she was a baby, most of which you have seen before. The rest of the pictures are ones from a year ago through the end of June, 2010. I will be sharing another montage containing pics from July, 2010 to present next weekend.

So here goes...

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Stand By For An Exciting Announcement...

2011-02-16T09:25:00.007-07:00

Who is now a civilian government employee?

THIS GUY!!!!

That's right folks! My husband, who has been a government contractor with very little job security and mediocre benefits for years, who has been working toward securing a permanent government position for over a decade now, finally reached his goal!

This means big things, not the least of which is that Jeremy's job is finally a career. He has job security, great benefits, awesome opportunity for advancement, and can pretty much work anywhere in the world where there is a U.S. government or military installation.

Jeremy wanted to wait until he is sworn in on the 28th before we announced it, but he got a phone call today saying that he passed his drug screening and it is official, so he let me tell the big secret today. YAY!!!!

Can I tell you how proud I am of this guy?

Rissa Roo's First Field Trip

2011-01-31T16:37:00.009-07:00

Rissa had her first field trip with her pre-school class today. Her class actually had a field trip back in November, but it was to the roller skating rink and we didn't think she should go because of her hip issues. But today, they went bowling, and Marissa had a blast! Daddy took time off work to come and teach her how to bowl. It was so much fun!

This is Sully, the little guy I have been watching every week day since September. Isn't he a cutie?

Strong Rissa!!

YAY!!

She bowled a 115! Not bad for a first timer! Next time we'll have to see if she can throw it down the lane "old school". :-)

2010: The Year in Review

2011-01-03T08:43:00.001-07:00

2010 was a very busy, very exciting year for our little family. It was full of many life-changing events. Here's a recap, in pictures:

January: Hunkering down from the cold and getting sweet kisses.

February: A visit from Uncle Brian and Aunt Julia, just in time for Uncle's 30th B-Day!

March: Rissa Roo turned three years old!

And, she had an unfortunate accident resulting in a broken wrist.

April: Rissa added pneumonia to her broken wrist. :-( Luckily, we caught it right in the beginning so it did not hit her as hard as in the past.

May: Hung out with friends and enjoyed the warmer weather.

June: Rissa had her big surgery to reconstruct her airway. Just a step along the way to getting her trach out!

July: Getting dressed in her 4th of July best and hanging out with two Aunties and an Uncle!

August: Sleep study, complete with goopy hair and marker on her face. Yet another step toward decannulation.

September: This was a huge, exciting month! It started out with a visit from Grandma. She stayed for a week and she and Rissa loved on each other lots!

Then, I started taking care of my friend's baby boy when she went back to work during the weekdays. Now, Marissa has a "little brother" to boss around!

Then of course, the biggest and most exciting part of the whole year: Rissa had her trach taken out for good! So awesome!!

October: Showing off her naked neck and being Minnie Mouse for Halloween.

November: Another huge milestone: Rissa started school! She absolutely loves it!

December: One last milestone for the year: Rissa's first haircut. We only took about two inches off but it looks great!

Finally, a wonderful Christmas spent in Grand Junction, at Nana & Papa's farm with our awesome family!
Whew! Can't wait to see what 2011 has in store for us! Happy New Year, Friends!

One Last Post... For 2010

2010-12-31T21:23:00.001-07:00

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!

Bah! Humbug!

2010-11-30T20:09:00.004-07:00

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!

School Days

2010-11-08T16:02:00.002-07:00

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!

Better Late Than Never

2010-11-07T07:32:00.000-07:00

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...

She's a Hippie Chick...

2010-10-20T07:55:00.004-06:00

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!

But...

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?

A Good Problem to Have

2010-10-08T16:52:00.003-06:00

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.

Left You Hangin'

2010-10-02T21:15:00.010-06:00

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.

Then...

And now!

Hear no evil...

See no evil...

Speak no evil!

Big girl!

Eulogy for a Trach

2010-09-21T11:58:00.002-06:00

It was a love-hate relationship.

When it came into our lives, almost three and a half years ago, it sounded like the ugliest, foulest 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 saved 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

RIP

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!

The Newest Member of the Naked Neck Club!!!

2010-09-20T14:15:00.008-06:00

Waiting for it all to begin, wearing her "got a trach?" shirt. Now we need one that says "got a trach?" on the front and "neither do I!" on the back!

"See Mom, Elmo doesn't have a trach, and pretty soon, I won't either!"

NAKED NECK!

The most gorgeous tan line I've ever seen!

Someone Upstairs is Smiling on My Girl

2010-09-17T12:46:00.008-06:00

Well Peeps, here's the scoop:

After a long, emotionally draining week of waiting for phone calls, not getting phone calls, having to call the Dr's office myself, going back and forth, and thinking we were going nowhere fast, we have an answer.

First, I found out that the soonest the sleep lab in Denver could get Marissa in for a study is October 24th. Yep. October 24th. Pointless if we want to get her trach out before cold and flu season hits.

So I called Dr. P's office and requested a phone call directly from her to talk about a solution to this problem. Ten minutes later, she called me back. She told me that, obviously, that date would not work for us and she had been looking back over the sleep study report from August 27th. She said that she only had one episode of obstructive apnea, which lasted less than 10 seconds, and her sats only dipped below the 90's one time, for less than 5 seconds. She did have "a few" episodes of central apnea, but that can not be helped by having a trach. So, she told me that, after careful consideration, she feels comfortable decannulating Marissa.

INCREDIBLE!!!! WOO HOO!!!

This coming Monday, September 20th, we will go up to Denver and Marissa will go into the OR to have a bronchoscopy at 11:30 am. If everything looks good, Dr. P will pull her trach. For good. No more silicone tube in my daughter's throat. No more trach ties around her precious neck.

I am still a little gun shy, so I am going to reserve my full-blown Happy Dance for after I see her without a trach. But, this is the best news we have had all Summer, and we are celebrating this step in the right direction.

Thank you friends and family for all of your prayers last week, and thanks in advance for your prayers on Monday. I love you all! I will be updating as soon as I can, hopefully with some naked neck pictures!

I'm off to have a fabulous weekend, and I hope you all are too!

***ETA***

Please say some prayers for our friend Faith and her Mommy & Daddy. She is struggling after having surgery last month to remove her trach. The sad truth is airway kiddos are always one step away from disaster, trach or no trach, and it is just heartbreaking. Please pray that a workable solution comes soon from her team, so she can get back on the road to recovery, back on the road to being Faith again. Thanks.

Totally Aggravated

2010-09-10T13:25:00.005-06:00

Well, the appointment today did not go as we had hoped, to say the least.

We got there and Dr. P proceeded to tell us that the sleep study results came back saying Marissa had a few episodes of both obstructive and central sleep apnea. She said based on these results, she would be on the fence about decannulating Rissa. Then she told us that, in about the last six months, she has questioned the results from this particular sleep lab and found them to be not as reliable as they should be. She said there have been several cases where the sleep lab in Colorado Springs said the kids had sleep apnea and then a repeat study done in Denver came back saying they did not, or it was not as bad as the first study said. So, she wants us to do another sleep study, this time at her new hospital in Denver.

Really????

AAAAAAGGGGGHHHHH!!!

I am so frustrated because the study we did two weeks ago was all for nothing. Nothing! I hate the fact that we have to put Marissa through all that again. For anyone who knows anything about sleep studies, I am sure you understand. It is not a comfortable thing for an adult to go through. But for a kid, especially one like Marissa who has very high anxiety about doctors and people poking, prodding, and sticking things to and in her, it is terrifying! I don't want to have to put my baby through all that again. She is getting to the age where she is going to start remembering all these things we are doing to her. I just hope she doesn't start to develop some serious trust issues. I feel so bad for her.

I am also a little perturbed at Dr. P for ordering a sleep study and allowing us to have it done at a lab she does not trust. If she would have just told us to have it done in Denver in the first place, I am confident we would have a concrete answer and Rissa would probably be decannulated by now. I know she has had her hands full with the move of her home and practice from Colorado Springs to Denver, working out all the kinks, but still. I just wish I would have known she did not have confidence in this sleep lab. You can bet I would have not scheduled it down here and would have had it done in Denver instead.

So, we will do this new sleep study in Denver and, if the results come back to where Dr. P feels good about decannulating Rissa, she will have us come back to Denver for a bronchoscopy and decan. Dr. P did say that she does mostly feel Marissa is ready, she just wants to do everything possible to make sure. Because re-traching her would be so traumatizing, for Rissa and us. I can respect that and I am glad she is being so thorough.

If the new results come back negative, Rissa will keep the trach until at least next Spring. Sigh...

I am so frustrated because of the timing of all this. Jeremy was on vacation all this week. That is why today's appointment worked well for us. Starting on Monday, I am going to be watching my friend's little boy during the weekdays. Now, I am going to have to ask my friend to find other arrangements for her son for the new sleep study and the bronch/decan (if that happens at all). I did everything in my power to keep that from happening. I hate having to do that to my friend. Also, Jeremy will have to take more time off of work. Blech.

I know that this is all according to God's plan, and His timing is perfect. But, if He would just follow my plans for once, things would go a lot smoother!

I am so tired of jumping through hoops. Especially jumping through ones we have already had the *pleasure* of jumping through before.

I guess those hoops were just not fiery enough.

Staycation!

2010-09-08T21:33:00.010-06:00

We have been having a wonderful time the last several days being on "staycation". Jeremy's mom, Janice, flew into town Saturday evening and we have been thoroughly enjoying her time with us. Marissa totally loves her Grandma!

We have been hanging around, not doing much of anything. Monday, I didn't even get out of my pajamas, and it was glorious! It has been so great not to worry about going here and there, but instead, just concentrating on enjoying each other's company and relaxing.

This evening we met up with my sister, Michelle, and her fiance, Nate, at our favorite chinese restaurant and had a really nice dinner. Tomorrow, we will be going to Red Lobster with friends and family to celebrate my birthday. Then Friday morning we will head to Denver for Marissa's appointment with Dr. P to go over her sleep study results. We are very optimistic!

Here are a few pictures from the last few days.

Marissa trying on Grandma's earrings

Marissa & Daddy cheesin' it up

Grandma taught Marissa how to put her hand underneath her chin and say "I'm thinking"

Awwwwww.....

Gettin' some Mama Love

I'll update again after Rissa's doctor appointment. Thanks for checking in!

Why I'm Typing a Post at 3:00 am

2010-08-28T03:20:00.006-06:00

Marissa and I are at her sleep study and she is sleeping but I am not. I fell asleep about 12:30 and woke up at about 3:00 because the tech came in to put her nasal cannula back in. It woke her up and she was scared and crying, so I had to stand by her crib and comfort her back to sleep.

Therein lies the problem.

The crib only has two levels for the railing to be at. Really low and really high. Marissa is normally good about not falling out of bed, but if she is disoriented and scared, like tonight, she might not be so good. So the rail needs to be up higher. She is much more sensitive here than at home, in a scary place, with probes all over her and a nasal cannula. Understandable. When she needs to be comforted, she likes my hand on her chest or side. I am not tall enough to reach her over the rail when it is in it's high position. I can't reach her through the bars. When the metal crib rail is slid up and down, it makes squeaking and locking sounds. Which wakes her up. Which requires me to get up and comfort her back to sleep. But I am not tall enough to reach her over the rail and I can't reach her through the bars. So I have to lower the rail, comfort her back to sleep, and put the rail back up. Which makes squeaking and locking sounds. Which wakes her up. Which requires me to get up and comfort her back to sleep. But I am not tall enough....

I think you get the point.

So I had the bright idea to pull a chair up beside her crib, stand on it, and comfort her over the rail. This way, there is no sound of the rail sliding and locking into place because I don't have to lower it. Brilliant!

Except...

The tech saw me through the night camera and came in and told me it was a liability for me to be standing on a chair. Which I completely, 100% understand. In fact, I knew it was not going to be an acceptable solution as soon as I came up with it. But I had to try something.

Now she is asleep, the tech came in and raised the rail back up, which did not wake her up. Halleluia!!

But, I am awake now and it is pointless for me to try to go back to sleep because the tech said he will be waking us up at 5:00. Which is in a mere hour and 15 minutes. By the time I got to sleep, it would be time to wake up. Boo.

Oh well. This isn't about my sleep, it's about Rissa's. And she is sleeping pretty well, so it's all good.

I can always take a nap. Or two. Or seven.

**UPDATE**

It is 6:30 am and we are back home. I am about to go take my first nap of the day, but I wanted to give you all a little info on the how the night went, test-wise.

I asked the tech for his opinion of the preliminary results, assuring him that I fully understood that it is not official until the report goes up the chain of command and the doctor tells us what's up. He said that her CO2 levels looked really good, as well as her pulse-ox levels. He did say that she had a few, very brief periods of apnea throughout the night, but that is not uncommon with trach kids. She slept really well, going in and out of the different stages of sleep appropriately.

Of course, we will wait for the official word before we get too excited but, all in all, it was a successful night!

Goodnight for now...

Wordless Wednesday

2010-08-25T06:17:00.002-06:00

Layin' Low

2010-08-19T08:42:00.010-06:00

Hey all, sorry for my absence in Blogland as well as Facebook. We have just been laying low in preparation for a very busy September and October. Nothing much has been happening here, just enjoying the last of our Summer.

We will be on a "Staycation" the first week of September when Jeremy's mom comes from Utah to visit. Jeremy is taking the week off so he can fully enjoy time with his Mama, as we have not seen her in over two years. We don't have any plans to go anywhere, and we like it that way. We are just planning on soaking up lots of Grandma Utah time.

Also, starting September 13, I will be embarking on a new and exciting adventure. I am going to be taking care of my friend's three month old baby boy during the day when she returns to work. It will be challenging and fun, and it will test the waters for Marissa and us to see if another little one is in our future. I am really looking forward to having a little one in the house again!

Marissa has a sleep study on August 27th. If all goes well with that, which we fully expect it to, we will be setting a date in September to have Marissa's trach finally taken out for good. We are cautiously optimistic that things will move forward in the right direction. If she is able to get her trach out, we will be enrolling her in school starting in October. Lots of big and exciting stuff happening for our little girl in the next few months!

We were happy to have a visit last weekend from my Dad and Step-mom, Marissa's Bubby and Zeyda (Yiddish for Grandma and Grandpa). We hadn't seen them in two years and Marissa really enjoyed all the extra attention! Here are a few pictures and a video of their visit:

Rissa telling Zeyda stories

Auntie Chelle and Bubby looking at wedding dresses for a June or October 2011 wedding. How exciting!

Uncle Nate staying out of the wedding dress debate. Smart man!

Zeyda, Rissa, and Daddy having a little fun during "quiet time". HA! You can hear the squeak I am always referring to when Rissa inhales after each laugh.

I'll try not to take such a long break in blogging in the future. Thanks for checking in!

Lookin' Back...

2010-08-05T15:06:00.005-06:00

... on the memory of

the dance we shared

'neath the stars above...

Photo and video editing at www.OneTrueMedia.com

Still On Track

2010-07-27T12:52:00.002-06:00

So far, we are still on track to probably decannulate Marissa in September. We just had an appointment with Dr. P today and we downsized her trach from a 3.0 Neo to a 2.5 Neo (the smallest trach made without going custom).

I emailed the doc a couple of weeks ago with my concerns that the squeak was still there and I didn't think it was due to swelling and irritation in her airway. I told her it was the same squeak that was there before her surgery and I just didn't think it was going to go away with time, at least not before decan season is over. I asked her, based on the fact that she is not in respiratory distress when she squeaks (no dropping of sats, no color change, no retractions or nostril flaring), if she thought Rissa's vocal cords are still not moving properly and how comfortable she is with decannulating anyway. I let her know that there was no way I want to decannulate if it is not safe or in Rissa's best interest. Here is a quote from her email response to me:

If the squeak is still present, I think we are looking at the possibility that, even though the graft opened her airway up some, it may not be open enough to prevent her vocal folds from meeting midline and creating the sound. There are positives and negatives to this. Negative, her cords are still not completely lateralized, however, the positive is, if her airway is stable, this may not matter and it decreases our risk of aspiration.

So, the squeak may not be a problem. Dr. P wants Marissa to have a sleep study and, if all goes well, we will see her in Denver sometime in September to yank that tube!!!

Blogger's Block

2010-07-20T16:13:00.033-06:00

I have not had much to blog about lately. Just sitting in a holding pattern waiting for the next move with this whole trach situation. Not much else going on, other than a busy Summer!

I guess I can share pics from the last two weekends. And because I have nothing else to talk about, there will be a lot of pics!

On July 10th, Jeremy, Rissa and I got together with a few of my college girlfriends and went to the Downtown Aquarium in Denver. We had a really good time catching up and we promised we wouldn't wait so long next time to get together.

Kaden & Marissa checking out the deep sea diver

How did she get up there???

The Big Squeeze!

Reliving the ol' senior picture classic tree pose!

Together again, minus one

Three of the coolest chicks I know!

Group shot!

This last weekend, we had the pleasure of having my youngest sister come out from Grand Junction. Jeremy and I have not gone to a big concert since before Marissa was born. This used to be one of our favorite things to do together, so when the opportunity came up to go to a big heavy metal festival, we were chomping at the bit to go. Only problem was that my sister, Michelle, who usually watches Marissa, had to work. On a Sunday!! Only the second Sunday she has ever had to work since working at the hospital for the last four years, by the way! Just our luck!

Because I felt that Marissa would fare better all day with someone she is familiar with, I had the bright idea to ask my sister, Katelynn, if she would come out to watch Marissa. She said "yes", so she got here Friday night. Saturday was spent training her, going out to lunch and to see "Eclipse" with her and Michelle, and hanging out with Uncle Nate and the two Aunties in the back yard. Jeremy and I scooted out to Denver for our metal fest Sunday morning. It was a blast! It was a long, hot day with lots of walking and plenty of crowds, but well worth it. Jeremy and I had a great time and got back home at midnight to a sleeping Marissa and a very tired Auntie Katelynn! Thanks again Katelynn, we love you!

Anyway, here are pics of our backyard hijinks.

Auntie Chelle, Rissa, and Uncle Nate

OMGosh! The chair has eyes!

Auntie Katelynn comes out of hiding

Uncle Nate sporting a great pair of shades. Lookin' good!

Now, Mama's turn for the shades

Making sidewalk art with Uncle

There's bad intentions behind those eyes...

Can you see it coming?

Ahhhh, it was all about breaking the chalk!

Uncle Nate's dog

Lovin' on Auntie Chelle

And spreading the love to Auntie Katelynn

Playing catch with Auntie & Uncle

Goofball City!

There, that's better! Well, maybe...

Wait and See

2010-07-08T06:37:00.005-06:00

We got some great news from the bronch yesterday. There is absolutely no malacia, no granulation tissue, and she is not collapsing at the stoma. Hooray! The doc said her airway looks beautiful, aside from some swelling, which she still thinks is what is causing the squeak. I asked her if there is anything else we can be doing to reduce the swelling and she said no, we just need to wait and see.

I have a few ideas though. We have been capping her at night instead of using the cool humidified mist she used to use. She has been doing very well with the cap at night. Now that we know she can be capped at night, I think we will go back to using the cool mist to to see if that helps with the swelling. I also wonder if she is refluxing and the Zantac has stopped working. I am going to email Dr. P with this idea and ask if there is some other med that we can use, just in case this is the problem. I also wonder if capping her all day is possibly contributing to the swelling and irritation, since she is having to breathe in and out around the trach tube, so we are going to try using the PMV during the day to allow her to at least be able to inhale through her trach. Once again, we know she can tolerate the cap, so going back to the PMV will not be a step backwards. I may be grasping at straws here, but I'll do whatever it takes to help Rissa move on past this stage in her life.

Dr. P said she is still hopeful that Marissa will decannulate by the end of the Summer. The catch is that it will probably be done in Denver. She wants to give Rissa plenty of time to get the swelling down and her last day here is August 13. She starts in Denver on September 1, so we will most likely be admitted to TCH and decan up there. I really don't care. We'll go to Abu Dhabi if it means she gets that tube out of her neck!

So now we play the waiting game. I've been playing for the last 3 1/2 years and I have found I am not very good at it. Oh well, I'll just keep playing, I guess.

Sucktastic!

2010-07-05T20:04:00.006-06:00

Well friends, we will be headed to the hospital sometime Wednesday for Marissa to have a bronchoscopy to try to discover the source of the squeak. Either the steroids are not working or allergies are not the problem.

We were very optimistic, especially Friday night. At that point, she had been on the steroids for 24 hrs and we started to hear some positive changes. The squeak was still there but not as loud. Really only a slight change, but we thought she could only improve from there. Well, since then there has been zero progress. The squeak is still there.

I am trying not to be discouraged, but it is very hard. Honestly, every time I hear that damn squeak, a little piece of my heart breaks. I just feel it is time for Marissa to catch a break and get that tube out of her neck! Enough surprises and setbacks already! Enough!

I will call Dr. P's office tomorrow to find out what time we need to be at the hospital. I don't really know what to hope or pray that we find right now. She may have some granulation tissue that can be lasered out. She may have some malacia, either tracheal or laryngeal. She may be collapsing at the trach stoma. We may not find the source of the squeak.

I'll update again when we hopefully get some answers on Wednesday. Please just pray that we can find out what is causing the squeak, that it can be easily addressed, and that we can still stay on track toward decannulation this Summer/early Fall.

Thanks.

Allergies?

2010-07-01T13:11:00.002-06:00

That's what Dr. P thinks is causing the squeak. We are hopeful this is the case.

Dr. P used the flexible scope on Marissa today and showed us that there is some redness, irritation, and swelling in her upper airway. She thought the sudden onset of the squeak pointed to the fact that Marissa is dealing with a cold or allergies, the latter being more likely with the lack of other symptoms. We have noticed that Rissa has been dealing with a slightly stuffy nose in the last week. Dr. P prescribed her a 10 day course of steroids and we are hoping and praying this will do the trick.

In related news, the scope showed that her airway is much more open around the vocal chord area and the vocal chords themselves are moving much better. So, overall, the surgery was a success! Praise God!

So the plan from here is for Rissa to be on steroids to clear up the inflammation in her airway. We are to let Dr. P know by next Tuesday if we do not hear any improvement in the squeak. If that is the case, Rissa will need to be scoped in the OR. If the squeak has improved, we will just see Dr. P in her office next Thursday and hopefully move forward with a plan to get that pesky tube out of Rissa's neck. Let's pray for that!

Thanks, friends.

Worried

2010-06-28T07:39:00.007-06:00

Yup. I am. Can't help it.

I have always been a worrier. I used to worry about things like money, staying safe while driving, plans for the future. Now, my worries almost always center around my precious girl. I have been worried about her almost since I learned of her existence. A new level of stress and anxiety was born right along with her on that March night three years ago.

My newest worry is related to the airway surgery she had 2 1/2 weeks ago and our plans for decannulation. This time last week, I was very hopeful. We had just started capping her at night and she was doing really well. We had not heard the loud squeak we used to hear when she inhaled while crying or laughing. The bronch she had showed that the graft was taking very well. The doc said all these things are necessary to consider decannulation. Check, check, and check. Right?

Maybe not.

She is still tolerating her cap 24 hours a day really well. And, I'm sure the graft site is still doing great. But, starting last Thursday, I started noticing that all too familiar squeak when she inhaled while crying or laughing. Damn. I was hoping I was imagining things. Nope. It is there, and while it is not as strong or loud as it was in the past, it has reappeared. One of the criteria the doc has for decan has all of a sudden not been met.

In the past, we thought the squeak was due to the fact that her vocal chords did not open properly and she was having to breathe through a slit while capped. He sats always stayed up while this sound was present, so we never really worried about it, knowing that she would have surgery to correct the problem.

Now, while it may be out of desperation, I have a new theory. I believe that the sound we are hearing while she is capped is her trying to breathe around the trach. Think of it this way: when Marissa does not have a cap on her trach, she is breathing through a straw in her throat. When she is capped, that straw becomes a stick that she can't breathe through. Not only can she not breathe though it, but she has to breathe around it, hence the squeak. Jeremy and I tested this theory yesterday morning after Marissa's bath. While we were changing her ties, we kept the trach capped, pulled it out just far enough for the tip to be sitting just inside the stoma, and Jeremy made her laugh. So, with the stoma plugged, but without the trach sitting in the trachea, we tested and did not hear squeak!

I am not 100% confident in this test simply because we did it for such a short period of time (a few seconds), but it does encourage me to run the info by her doc and see what she says. We have an appointment with her on Thursday. I am pretty sure she will use the flexible scope to look down at Marissa's vocal chords. I pray that they have more movement now than they used to and we can let her know what we think about the squeak. I pray we can still move ahead with plans for decannulation. Mostly, I pray that I can give up all this worrying and allow myself to let God to be in control. I know He is anyway. I know He has this all planned out, so why should I worry? But when my brain won't shut off, it is a hard concept to grasp. I truly am my own worst enemy.

Please, don't get me wrong. I do not want to do anything to Marissa that might jeopardize her health or life. I just have a strong feeling that my theory is correct and the trach is actually causing the squeak. The only way to tell for sure is to pull the trach, under the very close supervision of the doc and the hospital and let Marissa show us what's up.

Please pray with me that we can move ahead with plans for decan and that Marissa can safely breathe without the trach she has now had for more than three years. She deserves to know what life is like when she can just be a kid and go out in the cold Winter air, take a bath, swim, play in the sand and dirt, and run through the sprinklers without us having to hold her hand and protect her neck at all times.

I'll let you all know how things go on Thursday. Thanks in advance for your prayers and support. Not sure I could do any of this without you.

Hot Fun in the Summertime!

2010-06-25T07:50:00.001-06:00

Every kid should have the opportunity to run through the sprinklers in the Summer! Now Marissa can too, with a little help and supervision, of course.

Pure joy!

We just LOVE Summertime!

The King of Her World

2010-06-20T05:10:00.000-06:00

Happy Father's Day, Jeremy!!

Photo and video editing at www.OneTrueMedia.com

Marissa is so blessed to have you for a Daddy. God sure knew what He was doing when He chose you for her. I could not have asked for a better partner in raising this little one. Thank you for being such a caring Daddy. We love you so very much!

Good News and Bad News

2010-06-18T12:00:00.003-06:00

First the good news...

Marissa's bronch was the shortest ever!! It took about 20 minutes, just long enough for me to enjoy a six inch sub sandwich and a bag of chips. The doc said it was so short because everything looks great! Her airway looks good, just a little swelling left over from the surgery. The graft looks excellent and is settling in nicely. Dr. P wants to see her in her clinic in two weeks. We are to work back up to capping during the day, then add the cap at night. Once she has done that successfully, it will be time to start talking decan. So, all in all, we heard everything we wanted to hear. YAY! Thank you all for your prayers.

Now the bad news...

That little stinker, Dr. P, is planning to move her practice to Denver in the Fall! She would be the fourth doctor from Marissa's team that has moved. And she is Marissa's main doc, next to her pediatrician! The good news in this situation is that she is planning on conducting a clinic down here twice a month. And if that doesn't work for us, I asked her if we could follow her and she said absolutely! So worst case scenario, we'll have to drive to Denver each time we need to see her. There is no way I will let her get away. She is too good of a doc and Marissa loves her. She is the only doc that Marissa does not get hysterical with every time we see her.

Thanks again and have a great weekend!

What an Amazing Kid!

2010-06-16T09:53:00.006-06:00

Marissa has not had any pain meds, including regular strength Tylenol, since Sunday afternoon. That would be only 48 hours after surgery! Incredible!

We have put the cap on her trach a few times for a little while and she tolerates it well. We only leave it on for a little while because we want to give her throat and vocal chords a rest. We have noticed a significant change in her voice. :-( It is much softer and breathier, just like the doc said it likely would be. She also can get raspy pretty quickly. I know it is quite soon to make the determination that this is her new voice, but I have a strong feeling that it is. I know there are things that can be done in the future to help her strengthen her voice, but I still have a hard time knowing her voice will never be the same.

Here is a video demonstrating what she sounds like now. There are times that her voice does get breathier and weaker.

Jeremy and I gave her a bath for the first time last night and uncovered her incision. It looks really good! It is about 1.5 inches long and it is under her right breast. The good news is that, once she develops into a young woman, the scar should be completely concealed.

We will be returning to the hospital on Friday for Marissa to undergo a bronchoscopy. The doc will look for signs that the graft is taking well and is not developing an infection. She will also check the function of her vocal chords, and will measure her airway. She should be able to give us a ballpark time for decannulation. From what she has told me before, we will begin capping trials, with the ultimate goal being that she is capped 24/7 and keeping her O2 sats up. Once we do that, we might do one more bronch and then decan. It is likely this will happen by admitting her to the hospital for overnight observation. Hopefully we can say "Bye-bye trach, hello naked neck!" sometime very soon.

I'll update again after the bronch. Thanks for all the prayers and support, you guys are the best!

She's Home!!

2010-06-12T10:08:00.005-06:00

We got home at about 9:30 this morning!

She and Jeremy had a pretty restless night. She would wake up about every 30 minutes and want to hold Daddy's hand. He didn't think she was in too much pain during those times, just uncomfortable and sad, wanting to be home. She decided to start sleeping well at about 5:00 and when Mom and I got there at 7:30, she was still sleeping.

At 8:00 the nurse came in and said Dr. P called with discharge orders. Yay! Marissa got quite agitated as we were packing up and moving her around trying get her ready to leave. As soon as she got into her stroller, the smiles started appearing on her little face and she got really happy! She was even dancing to the music on the radio on the car ride home!

So, now we are home and she is watching her favorite video, "The Adventures of Elmo in Grouchland", aka "Elmo's Blanket". I still can't believe we are home 24 hours after she went into surgery! Her recovery will still be pretty painful and long, but we are hopeful. We are just going to stay on top of her pain and let her rest up. Hopefully she will start to feel better and better as the time goes on.

Thank you all for your messages of love, prayers, and support. It really means so much to us to have so many of you pulling for us and lifting our little girl up through all of this.

I leave you with a couple of pictures and a video to demonstrate just how happy our girl is to be home...

Surgery

2010-06-11T16:19:00.002-06:00

Rissa is in the PICU for at least overnight. She did really well through the surgery. It was a long one; five hours but a lot of that was the doctor trying to get the graft to get into the right spot. It was just being stubborn! True to Rissa form, she made Dr. P earn her paycheck today!

She is now resting comfortably and Dr. P is hopeful she will be out of here tomorrow. Let's pray for that!

Thanks for all the prayers and good vibes. Keep 'em coming!

My Name Is...

2010-06-06T15:25:00.003-06:00

OK, so this was just too cute not to post.

Make photo slide shows at www.OneTrueMedia.com

I L-O-V-E her little voice! Even when she is impersonating a baby velociraptor! ;-)

This girl totally makes me smile.

Rissa's Poem

2010-06-04T07:41:00.008-06:00

*ETA* Surgery time below

I wanted to share a poem that Marissa's Grandma Utah (Jeremy's mom) wrote for her recently. It is so cute and pulled from real life situations. It represents Rissa and my struggles with her temper tantrums perfectly.

A little back story first. The other night, Marissa had asked for a pretzel. I gave one to her and, in typical Rissa form, she threw a tantrum instead of taking it from me. So, on a whim, I decided to recall Daniel Day-Lewis' performance in "There Will Be Blood" and said "I eat your pretzel. I EAT IT UP!!" I then proceeded to eat her pretzel. She immediately let out this blood curdling scream. I felt bad but could not help laughing. Jeremy and I laughed so hard that Marissa eventually joined us in laughter. So Grandma Utah incorporated the incident in her poem.

Enjoy.

When I’m strong and headed for

A tantrum filled with alarm

My mommy frowns and sits me down

And holds me in her arms.

I don’t know what it’s called,

or I forget the word,

of the thing I’m pointing at

which somehow you misheard.

How can I make the sound

With a stick stuck down my throat.

And form a word you understand

No..I didn’t want a boat!

And then one day I just gave up.

My mouth was not pronouncing,

“I want to hear that song again

You know…the one where I was bouncing.”

And the toy you gave me yesterday

Was what I really wanted

Then changed my mind because I can,

Fell on the floor, taunted.

The pretzel looked so good to me

I pointed and you retrieved.

Then once again, I threw a fit

You didn’t look so pleased.

So in your mouth you popped my treat

And down your throat is went

My, my, what a face I made

And showed you how to vent.

With indecision, I’m a child

Who has to be creative.

With every word or gesture made

So you get what I am saying.

I need your eyes, your ears your mouth

As extensions of my own.

To learn the way you do those things

So I can stand alone.

Not by myself or in the shadow

Of every normal thing.

Just independent from all of this

To sleep at night and dream.

Thank you, Janice. That is a wonderful poem! We love you!

Something might come up in the next week to change my mind, but this is probably going to be the last post before Marissa's surgery next Friday, June 11. *ETA* She is scheduled for surgery at 9:00 am. I will update from the hospital when I can. Please pray for my girl next Friday. Pray for us, for the doctors and nurses, and for our family. Thank you.

Rissa Roo's 3rd Homeaversary!

2010-05-31T06:20:00.007-06:00

Three years ago today, Marissa came home to us from the hospital. She was finally ours. When I look back, 2 1/2 months, or 79 days, does not sound like that long of a time. But then I think about how long ago her birthday was and it just amazes me that we went that long without being able to bring our girl home.

We are going to spend today having fun and celebrating Marissa. I think we'll go back to that park we visited on Friday. And yes, I will remember the sunscreen for all of us today!

I am going to link you back to the post I wrote a year ago about this day. I just don't have it in me to write a post today. We are about a week and a half out from Rissa's big surgery and I find myself struggling to find the words to express how I feel today. Preparing my heart and mind for my baby to undergo an operation is always a surreal experience. But the fact that this is such a life changing surgery that has so much riding on it's success has put me in a different place than I have ever been before.

Add to that the fact that a wonderful family just said goodbye to their sweet angel, Carter Jay, yesterday, and I just can't bring myself to write today. I am just going to hug, kiss, and love Marissa more today and thank God she is here.

So, here is the post I wrote about Marissa's Homeaversary a year ago. It pretty much says it all.

Swing High!

2010-05-28T07:27:00.019-06:00

Today, Marissa and I went out to our city's newest playground, Swing High. It is a universally-accessible playground that accommodates children of all different abilities.

I was impressed. The structure has ramps that go all the way to the top, so kids in wheelchairs can feel like a part of the action. There are about 7 or 8 different slides (Marissa's favorite) and the majority of the ground surface is rubberized. There is a big boat type structure that rocks back and forth and is wheelchair accessible. There is a big sand pit (underneath the big flower) that has lots of different, cool toys for digging and playing. Hopefully we can take Marissa in the sand by the end of the Summer.

Very cool! I give it two thumbs up!

Marissa had a blast on all the different types of swings. She didn't want to leave but we had to after about an hour. I, of course, slathered Rissa up with SPF 50 but forgot some for myself. The 85 degree sun was beating down on us (at 10:00 am!!) and I didn't want to burn to a crisp. But I assured her that we will be back as many times as we can this Summer. I do believe this is our new favorite park!

I am so glad this playground was built. Even though Marissa is not in a wheelchair, she is a little slower in learning how to negotiate playground equipment. She seemed more comfortable running around on the rubberized surface and climbing up on the equipment that was wider, lower to the ground, and had better hand grips.

I can really see kids in wheelchairs loving this park. I pulled this quote from the Swing High website. It is from a child who has played on "less than accessible" playgrounds in the past. This quote sums up exactly why every town should have a park like Swing High.

“At most playgrounds, I have to crawl out of my wheelchair if I want to play. It makes me feel like an ant, with all these giant kids running around me. My wheelchair is my legs. Would you want to take your legs off to play?”

So Get Out Your Seat and Jump Around!

2010-05-25T07:09:00.010-06:00

Marissa's new source of Summer Fun!

Her face when she was told it was time to go inside.

The Little Girl Who Had a Little Curl

2010-05-17T10:00:00.009-06:00

The was a little girl who had a little curl
Right in the middle of her forehead;
When she was good, she was very, very good,
And when she was bad, she was horrid.

~ Henry Wadsworth Longfellow~

Don't you just love the many faces of our goofy Rissa Roo?

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Quick update: After my last post, we all had the night from hell. Marissa woke up at 2:30 in the morning when her pulse ox alarmed because it wasn't picking up correctly. She normally sleeps through it but not this time. After an hour and a half of trying to put her back to sleep, we finally gave up. Jeremy was able work from home Thursday and Friday, so we had a 4 day weekend to rest up and see if we could get Marissa's attitude on track. A very encouraging development: Marissa was relatively well behaved because her Daddy was here. While it makes me a bit jealous that she will behave for him and rails so hard against me, it is good because it makes us more confident that we are not looking at a medical reason behind her outbursts. She is just darn sick and tired of being around me all the time and she takes it out on me!

She has had her ups and downs this morning but overall, I think the long stretch of Daddy time was good for her. She seems to be a little milder this morning. And, I was able to get out Friday evening and go see a good friend who is 8 months pregnant. We had Chinese takeout and talked for about 5 hours, before we realized how late it was. So good for my soul!

So, thank you for all the support, love, and prayers! Keep up the good thoughts and prayers, they seem to be working!

Rain

2010-05-12T15:54:00.009-06:00

A follow up to this post, to give you reference.

*edited below*

I've known adversity in my life. I've known true sorrow. I've lost loved ones and had my heart broken many times. Looking back, all of this was pretty typical, pretty normal in relation to what everyone goes through in this life. I used to think I had lived through some pretty tough times. Up until four years ago.

Four years ago, I found out I was pregnant on the Friday before Mother's Day. Then I miscarried my baby over Memorial Day weekend. From that point on, I have felt the rain falling on my life and in my soul. At different times, in different ways.

I got pregnant with Marissa four weeks after my miscarriage and almost miscarried her as well. It rained throughout my pregnancy with Marissa, through the time I was told she had an anomaly in her brain, a two vessel umbilical cord, and was small for her gestational age. Through the amniocentesis that gave no answers, through the genetic consults, through the time when I was urged to terminate. It rained when I was told she had stopped growing sometime between 31 and 34 weeks, that she was breech and they would not be able to turn her. It rained when I was told I needed to have a c-section.

It rained when she was born and was taken to the NICU to be put on life support. It rained every time she had to be re--intubated. It rained when we were told she needed heart surgery, when it was decided she needed a trach and g-tube. It has rained off and on since we brought her home on May 31st, 2007, through the different procedures, surgeries, and illnesses she has had to endure. And now, it is raining through these times, when I can not figure out how to spend the day with my girl without her throwing constant tantrums.

All of this is not to say that there have never been any sunny days in the past four years. Quite the contrary. There have been many times when the sun has come out, nice and warm, healing the hurts. I would even venture to say that there have been more sunny days than rainy ones. But the sunny days are always tempered by the knowledge that there is a rain storm lurking on the horizon. The rain is ever-present.

Now, before you go thinking that this is sounding like a commercial for Prozac, I want to list the positive aspects of rain.

Rain makes things grow. Just like the rain makes the flowers, trees, and grass grow, rain in my life over the last four years has made me grow. Having Marissa here has made everyone who meets her grow. All of the negative things we have experienced with her issues have made us stronger.

Rain cleanses. It washes dirt, muck, and grime away. Every time, after the rain stops, I feel refreshed and renewed. Clean. And, once again, the sun comes out and makes me smile.

Rain gives life. Looking back, I did not feel truly alive until Marissa came along. I had fun, I loved, I felt happy. But I did not truly live until she was here, problems and all.

Sun always follows rain. Long periods of rain make me appreciate the sun even more. Without the rain, how can we truly appreciate the sun? We would take the sun for granted, become complacent, and stop growing.

*edited to add* You can dance in the rain! One of my friend Ann's favorite quotes is "Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." Isn't that beautiful?

Rain brings rainbows. God's promise that He will never leave us to die, cold, scared, and alone. A promise that He will cover us with His grace, not because we have done anything to deserve it, but simply because we are His.

Rain can be a good thing. And we will see the end of this rainy season, knowing the next one is waiting nearby. And, by God's grace, we will survive.

"Rain"

by Creed

(video below)

Can you help me out?
Can you let me a hand?
It's safe to say that
I'm stuck again

Trapped between this life and the light
I just can't figure out
How to make it right

A thousand times before
I've wondered if there's something more
Something more...

I feel it's gonna rain like this for days
So let it rain down and wash everything away
I hope that tomorrow the sun will shine
With every tomorrow comes another life

I feel it's gonna rain
For days and days
I feel it's gonna rain

I tried to figure out
I can't understand
What it means to be whole again

Trapped between the truth and the consequence
Nothing's real
Nothing's making sense

A thousand times before
I've wondered if there's something more
Something more...

Chorus

Fall down
Wash away my yesterdays
Fall down
So let the rain fall down on me

Chorus

I feel it's gonna rain like this
Rain like this

I feel it's gonna rain like this
I feel it's gonna rain...

My apologies, Blogger is cutting half of the video off because it is so big. Once the video starts, you can click anywhere on it and it will take you to YouTube so you can see the whole thing.

Temper, Temper

2010-05-12T08:43:00.003-06:00

Warning: Vent and rant session dead ahead. Continue reading at your own risk.

Marissa and I have been really struggling for about the past three weeks. She is throwing almost constant temper tantrums. I'm talking running away screaming, slamming doors, throwing herself down on the floor, yelling, crying, writhing, flailing, thrashing like a crazy person. She saps all my energy and has me in tears by about 10:30 am every morning.

The most ridiculous part is she throws a temper tantrum over everything. EVERYTHING. Even the things she has asked for and I am in the process of giving to her. Example: She will ask for a cracker by saying "I want cracker, please.", which is great! Polite and everything! I get a cracker for her and as I am handing it to her, she throws her hands up, yells "NOOOOO!!!" and runs away screaming! What in the world am I supposed to do with that?

She also throws tantrums just for the sake of throwing them. Example: Yesterday she was throwing a fit because she wanted her rag (started out as a burp rag when she was younger and has turned into an attachment item). I told her I wanted her to ask nicely for it and then I would give it to her. She did, so I gave it to her. She then threw a fit (because I gave it to her??) and started flailing around, whipping her rag around in the air. She then said "I want ra....", realized she had the item she was about to demand, stopped dead in her tracks for about a second, and threw herself on the floor, crying. WHA??????

I have been feeling lately that she is here for the sole purpose of driving me insane. I think she is accomplishing her mission.

I have tried so many things: talking rationally and calmly to her; time-outs; spankings; taking toys and privileges away for a short time and giving them back when she has been tantrum free for a period of time; giving her choices when I can; ignoring the behavior; mimicking her behavior back to her. I try to be consistent but I will use different methods if one is not working. I know I probably don't handle every situation as well as I should every time, but I am at the end of my rope. It has gotten to the point that I don't enjoy my time with her anymore. This makes me very sad. She is going to have a major, life-changing surgery in less than a month and I want to cherish my girl right now. She makes it so hard.

I understand that she is trying to assert her independence and she is trying to figure out her place in this world, separate from me. I understand that she is still having some issues with communication and it is frustrating for her. I understand that it is in her nature to fight. She was born fighting for her life and she maybe still feels that is the only way she will survive. I understand that much of her behavior is typical but I do wonder if we are looking at a true medical behavior problem. I understand that she lives in a world where she has historically had very little to no control. She has been forced to do this or that, forced to comply with people poking and prodding her for the entirety of her life thus far. That is why I try to give her choices when I can. But even giving her choices sends her into a tizzy most times.

I'm not sure how much longer I can keep this up. Please pray that I can endure her constant tantrums, that she will change her behavior soon and we can go back to being loving and kind to each other. I really miss my sweet girl and I want her back.

Mother's Day Mish Mash

2010-05-09T05:09:00.004-06:00

To all my Moms (three of them) as well as all my friends who are Mamas, what you are about to hear is a true story...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In other, mostly related news, today is the third anniversary of Marissa receiving her trach and g-tube. May 9, 2007. For three days, she was given a paralytic drug. She needed to lay perfectly still so the trach site could heal properly. We did range of motion exercises for her on her arms and legs, so her muscles and joints would stay loose, but we could not hold her. That was so hard on this Mama's heart.

Then, on Sunday, May 13th, I got the best Mother's Day gift I have ever gotten or could have asked for. Jeremy and I came in that morning to see that the night nurses had made Mother's Day cards for all the babies' mommies:

Isn't that so sweet?

But that wasn't even the best part of that day.

After 3 1/2 days I was finally able to hold my girl for the first time after her trach was placed! I held her for hours and my heart was so full! She was even awake and alert for a short time.

Happy Mother's Day to me!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And now, some Mother's Day laughs:

I hope you all are having a wonderful Mother's Day!

Let's Get Physical Part Two: Tuesday in the Park

2010-05-04T14:35:00.005-06:00

I just had to do another PT montage, since we had the opportunity to go to the park for Marissa's session today! It was in the high 60's here, and even though it was windy, Marissa had a blast! And it was so nice to get out and play in the sunshine after such a long Winter. So here goes:

Please ignore the fact that the song says "Saturday" in the park. Please also ignore the fact that he says he thinks it was the 4th of July. Clearly, neither of these are true. ;-)

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Let's Get Physical!

2010-04-27T13:18:00.005-06:00

Just thought I would share what Marissa's Tuesday morning work out looks like:

Make video montages at www.OneTrueMedia.com

She is doing really great in Physical Therapy. She has so much fun while working with D, as you can obviously see, that it doesn't even seem like work to her! She is no longer popping her hip, or only does it so infrequently that it is no longer an issue, which is what she started back in PT for in the first place. So that is awesome! We have discovered some other issues she needs to work on, so PT will continue for her indefinitely. I am confident she will work past them with no problems.

I just love how she counts. It is so stinkin' cute, don't you think?

In unrelated news, Marissa is feeling so much better. Thank you for all your prayers and well wishes. She is pretty much back to 100% now, not even needing O2 when she is sleeping. I have no idea what she was sick with or where she got it but HOORAY for her being all better!

Also, more good news: She gets her cast off Thursday! YAY! I am so looking forward to it being gone. She has been such a trooper about it, only acting like it itches and bothers her a couple of times.

Thanks for checking in!

Bad Blog Buddy

2010-04-21T15:38:00.017-06:00

I have been out of commission, for the most part, the last week when it comes to reading and commenting on my friend's blogs. Sorry about that! I will be trying to catch up and stay up to date now. I miss you guys!

Marissa has been sick for the last week. It started last Wednesday when Jeremy noticed she was feeling a little too warm. The next day she had a low grade fever and just did not feel good. She just wanted to lay around, which anyone has ever seen Marissa in person knows is totally out of character for her! She is usually 100 miles an hour from sun up to sun down! Her O2 sats were staying up and we were treating her fever with Motrin & Tylenol. She seemed to be doing better Friday evening into Saturday.

Then Saturday night, she crashed again, this time needing O2 while she was sleeping. We got up and took her to Urgent Care Sunday morning as soon as they opened. Since she has a history of pneumonia, we requested a chest x-ray. They also did a strep test and trach aspirate. Everything came back negative but the radiologist did say that there was some inflammation in her lungs and she may be trying to start some pneumonia. So they put her on Zithro to cover what may be starting. All day Sunday and Monday she looked horrible and probably felt as bad as she looked. Poor Punkin!

Finally, Tuesday morning, she was acting more like herself. She walked from her room to ours, requested her animals (which she had not done in days!) and played with them on the bed. Good sign!

She has steadily gotten better and today she only needs a little O2 while she is sleeping. She has no fever and is back to her 100 mile an hour self! She must have been saving up all her bad behavior that she felt too yucky to act out for the last 6 days because today, she is a freakin' holy terror! I hope she calms down soon or I'm going to be checking into a mental hospital!

I'll leave you with a few silly pictures we took the other night. We were doing CPT on Marissa to break up her lung junk and decided to have a little fun with the CPT clappers!

I guess Marissa learned how to wink while she was sick!

Thanks for understanding my absence, friends. I'm back now!

Cheated and Robbed

2010-04-16T19:37:00.008-06:00

I am about to pour my heart out. You are officially forewarned.

There are certain feelings I try to keep at bay. Feelings of resentment, feelings of being robbed and cheated out of "normal". The normal pregnancy and infancy I missed out on with Marissa. The normal toddlerhood. The normal anything. And the normal she has missed out on too. I try to keep these feelings at bay not because they are not real or valid, but because dwelling on them takes my focus off the positives in my life. Namely, that Marissa is here, happy and thriving.

But these feelings are very real and very valid. And they bubble to the surface periodically and unexpectedly.

I had a dream that brought all these feelings up once more. In the dream, I had just given birth to a baby boy. I was so in love and the feeling was compounded by being able to have my little family all together in the same bed. The hospital said it was a new concept they were trying out to have the whole family (father, mother, new baby, and siblings) in the same bed so everyone can bond. I liked it. No, I loved it.

I was able to breast feed my new son. Oh, the feelings of pure joy and deep love I felt! Heart soaring. Soul flying. Indescribable.

At one point, I looked at my baby boy, cradled in my arms and saw an all too familiar look cross his face. All of a sudden he projectile vomited. The nurse came running in and said, "Oh my, that's not just spit up. It looks like he threw up everything you fed him. And it looks like way more volume than his little tummy could handle. I'm not sure he knows when he is full. He may not be able to regulate his own feeding, so I recommend you start pumping and feed him by bottle so you can monitor how much he takes in." Great! I already had a kid who I couldn't breast feed because she never learned how to eat by mouth. Now I couldn't breast feed my new little one because he didn't know how to stop eating! My heart dropped to my toes. I was distraught.

And, all of a sudden, I was no longer in the hospital with it's cozy soft lighting and family bed. I was at home now, and lights were dim. I had left the hospital and was actually talking to the nurse over the phone. Once she said I would need to pump my breast milk, I looked at the clock on the wall and realized it was late in the evening. The lactation department at the hospital was where to rent pumps and they were probably gone for the evening. I started to feel desperate.

I also felt sickeningly inadequate. I could not provide for my baby like I was supposed to. I had failed. Again.

I tried looking up the number for the hospital's lactation department but the lights were too dim for me to read the phone book. I grabbed my babies up, strapped them in the car, and told Jeremy to just drive me to the hospital on the off chance someone would be there to rent me a pump.

This is where my dream ended. I distinctly remember actually feeling the pain of engorgement as I was waking up. It was the strangest yet familiar feeling.

Obviously, I was unable to breast feed Marissa. The guilt and sadness that brought on was overwhelming. I was lucky enough to have a strong supply of milk, so I did feel like I wasn't completely failing her. I was able to pump for Marissa for five months. I had about another month of milk saved up in the freezer for her. I loved that I was able to provide the nutrition God intended for her but it had just become too much of a task to sit and pump every three hours, 20 to 30 minutes at a time with a little one that I had to suction, hook up to a feeding pump and do cares for, above and beyond the "normal" newborn stuff.

I became seriously depressed when I stopped pumping. I had always known that I wanted to breast feed my babies. It is not only the most nutritious, natural, and beneficial option for the baby, it is a bonding experience like no other. It is the one thing only a mother can do for her child. It is for this particular reason that I actually took pride in the fact that I could provide breast milk for Marissa. The doctors and nurses may have saved her life, even more than once, but they could not do what I could do.

The fact that she could not actually nurse cut into me like a knife. Unbelievable pain. When I made the decision to stop pumping, the knife went deeper. Deeper still when I came down to the last bit of frozen breast milk. I actually wanted to hold onto that bag forever, like a badge of honor that I could have showing how I physically loved my baby.

I haven't thought much about this whole breast feeding thing until today, after that dream. I realized today, that aside from being overly tired, stressed, and hormonal, I am still not healed from the trauma of not being able to provide "normal" for my baby. Not sure I will ever be. I do feel cheated and robbed. And I do feel guilt. I pray there is at least one more chance at normal for me, one more chance at redemption. Either way, I do know that I did the best I could for my baby and, someday when she is old enough to hear about it, she will understand. And I pray she will love me for it.

Lovin'...

2010-04-14T18:34:00.010-06:00

... Rissa's new Speech Therapist, Julie! Today was our first session with her and she is fabulous! I am so glad we have made the transition out of the early intervention program, which is how Marissa's former ST came to us. Not that her former ST was bad, it was just time for a new perspective and a new way of doing things. Julie is a feeding specialist as well and has some really great ideas. Julie had Marissa doing some feeding therapy today and she did so well! She had kind of stopped progressing with her former ST but today she seemed excited and encouraged to start taking some bigger steps and start trying new things.

Julie mentioned that Rissa is not only doing better than she expected, but is also farther along than most kiddos she starts with. A lot of kids have issues with food being scary to them and, luckily, this has never been the case with Marissa. The girl loves food, she just doesn't know how to eat it! Julie is excited to know that Rissa should be getting her trach out by the end of the summer. She said she knows many cases where a trached child started eating so much better after they had their trach removed.

I am just so excited to already see great things happening and I can't wait to see where Julie is able to take Rissa on this journey!

I am also lovin' Rissa's ENT, Dr. P. I have stated before on this blog how much we love her but it is just re-confirmed with every interaction I have with her. I have been emailing back and forth with her with some questions I have about Rissa's upcoming surgery. The fact that she is willing to communicate with me by email instead of making me talk to her MA to relay phone messages or making me come in for an office visit to answer my questions just makes me so happy! And she answers my questions in a way that just builds my confidence in her more and more with every correspondence. I am still not looking forward to this surgery and her recovery by any means, but I am becoming more informed, and therefore, more comfortable with it.

Just to give you all a better picture of what will be happening with Marissa's surgery in June, I am going to pull a quote from one of my emails with Dr. P. I asked her to go over, one more time, what different types of procedures she was considering:

Options I’m not too keen on are vocal fold lateralization and arytenoidectomy. Both of these are frought with potential complications (i.e. higher risk of aspiration postop) and are much more difficult in a young, pre-pubescent larynx. Marissa’s ideal choice is an endoscopic posterior graft. What this entails is actually taking a cartilage rib graft and endoscopically placing it in the posterior part of the subglottis to expand her airway. Still the risk of aspiration, but to a less degree. Other risks: breathy voice, failure of graft, infection of graft, airway compromise (always a risk in any airway procedure), collapse of lung (from the rib graft harvesting). Pain postoperatively is mostly related to the rib graft site. Hospital stay likely only a few days since she does have a trach. Would begin capping trials, etc postop. Would also be periodically evaluating her airway to ensure good “take” of the graft and no formation of granulation tissue (repeat bronchs within the first few weeks postop).

I can't believe it will be able to be done endoscopically, and therefore, the hospital stay and recovery time will be shortened significantly! I am ecstatic!

So, to review, we just had a really good day today, with really good people on Marissa's team and I just had to share!

A Party!

2010-04-12T06:24:00.003-06:00

Marissa went to her first wedding reception last weekend! We were invited to the wedding of two of Jeremy's friends from work. Since she really won't sit still and we didn't want to disturb the wedding, I sat out in the car with Marissa while Jeremy attended the ceremony. Then Marissa and I showed up for the party. She did really well, although she was pretty bored through dinner. As soon as the dance music started, she started shaking her groove thang and it was all smiles! She danced, ran around, and had an overall fun time. She looked so pretty and really kind of grown up. *sniff, sniff* And I think the cast coordinated very well with her outfit!

The Bride and Groom, Devon & Christina

She loves dancing in her Daddy's arms...

Every Kid...

2010-04-06T08:40:00.013-06:00

... has to try on their Mommy's and Daddy's shoes.

It's just one of those kid rites of passage.

HOORAY!!

Bummer!

2010-03-30T09:09:00.014-06:00

UPDATED AT END OF POST

ORIGINAL POST:

Well folks, Marissa had her first non-pre-existing medical condition related trip to Urgent Care last night (does that make any sense at all?). She was running here in the house and somehow her feet came out from under her and she fell hard on her right arm. She either fell with her wrist bent back or underneath. The x-rays showed she has a couple of "buckle" fractures in her wrist. Her shoulder and elbow did not appear to have any damage to them.

They put a splint on her, gave her Motrin and sent her home with instructions to keep her on Motrin and call the orthopedic doctor this morning. We have an appointment to see him this afternoon around 4:00.

The good news is that she is really acting like her normal self this morning. Even after we got to the clinic last night, she seemed to be in pretty high spirits. There were several other families with small children in the waiting room and Marissa took great pleasure in saying "hi" to all of them, smiling and waving. It was actually really cute. She started out saying "Hi you, Hi you!" then she started saying "Hiya boy, Hiya girl!".

She had a really good night and slept comfortably the whole time, which is more than I can say for myself. But that is a whole other post. I was a little concerned because she loves to sleep on her tummy. Really, it's more like sleeping on her face, but that is a whole other post too. : ) But she slept on her left side with her arm propped up by a teddy bear or on her back the whole night, which I am very pleased about.

I'll try to update everyone once we know what the ortho has to say. Please pray for my girl and her comfort as well as praying that it is not too complicated to fix. Thanks friends!

Being her usual smiley self!

Chillin' with Daddy. He is working from home today. She is actually asking to take the splint off. Surprisingly, she has only asked this a couple of times!

Dancing!

This girl is unstoppable!

Slingin' it!

UPDATE:

So, after waiting 2 1/2 hours, the doc came in, said he looked at the x-rays and told us she would need a cast. It was all over in ten minutes! All that waiting~UGH! He said he was originally going to give her a cast that came half way up her arm, but then he said due to her size, she would need one that goes above the elbow. Otherwise, she might slip out of it, which we definitely do not want! But overall, it was a good experience as they did not even have to set the bone. Woo Hoo! She will get the cast off April 29th.

She was a trooper the whole time. She cried, of course, when they were casting her but she has acted no different than she ever does since leaving the doc's office. See?

Stop taking pictures of me already!

Her Voice

2010-03-26T09:52:00.005-06:00

Disclaimer: There are many, many videos in this post. Don't worry, they are all very short. : )

Why is Marissa's voice so important to me? Why does the risk of the reconstructive surgery changing her voice forever weigh so much heavier on me than the increased risk of aspiration, or any other issue, risk, or problem?

When the idea of the trach was first brought up to us, the fact that she would not have a voice was the first thing that popped into my head. It was the issue that made me the saddest about this new life we would all be entering into.

I love baby voices. A baby's cry can bring me to tears myself. Especially life's first cry. No words can even describe what an incredible sound it is.

I absolutely adore baby babbles. If I am having a bad day, all it takes to put a smile on my face is to hear a baby laugh. I know Rissa is not a baby anymore but she has the best little kid voice I have ever heard.

Starting the night she was born, she was intubated for a week at a time, every other week, until she got her trach. She was never off the vent long enough for her vocal chords to heal so we never really heard her true voice. Any vocalizations we did hear were very quiet, stridorous, and raspy. These sounds were still so precious to me. It took almost a year after she was born for her to tolerate the PMV (purple speaking valve) so she could have her true voice back.

I can't explain what it is like to watch your baby cry a voiceless cry, other than to say it gives me an awful, aching pit in my stomach. It is pitiful to watch your baby try to use their only means of communication only to be rendered silent. Other trach parents certainly know what I am talking about. Even when she was on the vent, the effect was the same. The first time my mom visited Marissa after she was born, she told me the thing that made her the most emotional was watching her cry that silent cry.

Other trach parents can also relate to learning to listen for new, untraditional sounds to clue us in that our babies need something. Soon after we brought her home, I could be in the other room and immediately tell when Marissa started crying. While there is an absence of a voice, they do make different rattly sounds with their secretions moving back and forth inside the trach tube. And a cry rattle sounds different than any other.

Here she is the first night she was able to tolerate the PMV. She could only make the tiniest, softest noises but it was music to our ears.

She was about 9 months old but then she got pneumonia, so she could not tolerate the PMV again until she was about 11 months old.

This video shows her voice getting stronger, about a month after she learned how to tolerate the PMV. She was almost a year old and we could finally hear her laugh!

This video was shot when she was about 13 months old. She was finally babbling!

And this one (I have posted before) is one of my favorites. She was about 14 months old and saying her first word. Dadadadadada!!

I have always taken my voice for granted. I used to think nothing of going to a football game and screaming at the top of my lungs till my voice gave out (sorry Michelle!). Now, even though I still do my fair share of yelling at games, I always reign myself in by thinking of how Marissa has fought all her life to have a voice. It makes me thankful for my own.

I know that if this surgery changes Marissa's sweet voice permanently, I will still be thankful. Thankful that she is able to breathe without a trach. Thankful that she has a voice at all. Thankful that she is here with us at all.

Just For Fun...

2010-03-23T06:22:00.004-06:00

My Shoes

2010-03-16T15:59:00.011-06:00

I had the craziest rush of memories and emotions today, all brought about by gazing at my shoes.

These dirty, worn out, tired, faux crocs.

I bought these shoes the day Marissa was born. I had just been told that I was to be on bed rest until the 19th, when we had scheduled my c-section. I stopped by Payless shoes on the way home from work because I wanted something to shuffle around the hospital in and I didn't have any good slippers. I paid $7.50 for them.

I had always made fun of crocs. I thought they were funny looking. I still do, really. But there was just something about them that made me think they would be good for my hospital stay. Made of soft, squishy rubber - check. Easy to slip on and off - check. Non-slip soles - check.

Little did I know they would be good for so much more.

I was wearing them when my water broke at home. Any other shoes would have been ruined but I was able to wash them off, dry them and wear them again, right away.

They made the countless, endless, mind-numbing hours standing by Marissa's bed in the NICU more bearable, physically anyway.

They took no effort to put on as I hurried out the door the day the NICU called and told us Marissa was in congestive heart failure and needed to be sent to Denver for heart surgery.

They were so light on my feet as I would sit and hold my girl, looking at her with all the tubes and wires that had become so familiar yet so foreign, feeling as though the weight of the world was crashing down on my head.

They carried me silently up and down the hospital hallways to be with my girl more times than I care to count.

As I sat on the back patio swing today, watching Marissa run, jump, and play with such great joy and energy, it all came flooding back. I glanced down at my shoes and, I swear, I went back through every one of the 79 days Marissa spent in the NICU before she came home, in great detail. Don't get me wrong, I often think back and remember those days. Just not like I experienced today.

Eventually, she came up on the patio, climbed up on the swing, sat beside me, and reached for my hand. As we sat there holding hands, I once again thanked God for this little wonder of a girl He has blessed us with. To think of where she was exactly three years ago and to watch her laugh, play, run, and jump now is nothing short of a miracle.

All of this because I was wearing some old, worn out shoes.

What a Great Day!

2010-03-14T18:11:00.027-06:00

Marissa's Birthday was such a special day and we all had a great time. Aside from her being a little naughty by refusing to take a nap, she was an angel and had a constant smile on her face.

After her non-nap, we pulled out her first present: a brand new Radio Flyer tricycle that has a handle on the back for us to push her.

Jeremy worked hard to put it together Friday night after Marissa was in bed:

Marissa, pre-three wheeled surprise...

... and after!

Mmmmmm, pretty dress! Thanks Auntie Chelle and Uncle Nate!

My Pretty Pony and Elmo book from Katie and Kaden. She also got a Sesame Street sticker book from them too (no pics). Thanks guys!

Cruisin' around the neighborhood

Holding hands with Auntie Chelle

Can you tell who is on the cake? Great job Uncle Nate!

Not a happy face, but she finally tolerated it without looking like we were torturing her!

At Red Robin

She got her own basket of fries to lick! She was in heaven!

Happy 3rd Birthday to Our Girl!

2010-03-13T06:23:00.004-07:00

"Breathing in and out's a blessing, can't you see..."

"I'm alive and well."

Happy Birthday, sweet Rissa Roo! Mommy and Daddy love you so much!

To Clarify

2010-03-11T06:27:00.005-07:00

I know my last post made it sound like Marissa's upcoming surgery is a horrible thing. I don't want to mislead you. I think (hope and pray) the end result will be what we have been waiting for for years: getting her trach out for good. The last post (and I'm sure a few more in the future) came from a place of being scared to death of a lot of things this surgery will cause.

First, I am never ok with my baby having surgery. She has had five surgeries so far and it never gets any easier. It is just not cool to have to hand your baby over to someone with a knife and trust that they will do what is necessary to keep her alive, and that they will make her better.

I have never been ok with anesthesia. She does not have any known high risks for problems with anesthesia but I hate it when she has to go under. Anybody ever had minor, outpatient surgery and had to go to a pre-op consultation, only to be told that the riskiest part of the procedure is the anesthesia? That stuff is nothing to take lightly! Marissa has to go under every time she has a bronchoscopy. I have to sign the surgery consent forms. A bronch is considered surgery, even though there is no cutting involved, simply because of the anesthesia.

I am never ok with my baby being in pain while recovering from surgery. She has proven to be a tough cookie through past surgeries but it still breaks this mama's heart to see her in pain. I hate that we have to cause her pain to give her a chance to be trach-free.

I have mentioned previously (and it won't be the last time you hear it!) that two side effects of this kind of surgery are increased risk of aspiration and diminished voice quality. I am not ok with that.

Having this surgery scheduled makes it more real, and that brings on the feeling of fear. Fear that we are making the wrong decision, fear that it won't work and she won't be able to lose the trach, fear that the unthinkable worst will happen.

Having said all that, I really do believe that this is the right thing for us to do and it will result in Marissa losing the trach and being able to move on with her life. I am excited that we are taking this next step! I just need to keep focused on the positive, which anyone who knows me knows is pretty hard for me to do at times. I am not as positive a person as some of you might think.

One last point of clarification, and probably the most important. I do not want to come off as complaining or ungrateful. I have some friends whose kids will have their trachs for life. I am grateful there is a surgery that will give Marissa a chance to get her trach out. I also know she could not be here at all and I am forever grateful for the trach that saved her life and allowed her to come home with us.

Please pray with me that I can let go of my fears, give my burdens of worry and fear up to God and let Him have them for good. Thanks, friends.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

June 11

2010-03-10T14:44:00.003-07:00

The countdown has begun.

I was just about to wake Marissa up from her nap when I got the call. After I hung up the phone, I went into her room, sat in the rocking chair and just sobbed as I watched her sleep.

We have exactly three months to prepare for Marissa's airway reconstruction surgery which will set so many changes in motion.

I don't know if I am ever going to be fully prepared.

Not Much to Blog About

2010-03-05T09:06:00.012-07:00

Not much going on around here.

I guess I could tell you about the constant temper tantrums from an almost three year old every time I ask her to do something or tell her that I am going to do something (change diaper, give medicine, put her shoes on, etc...) Every. Time. But I won't. I'll save that for another post.

I guess I could tell you that it is consistently taking Marissa up to three hours to settle down and go to sleep each night. She tosses, turns, plays with all three lines, tubes, and wires attached to her, throws her bedding on the floor, etc... But I won't. I'll save that for another post.

I should probably tell you that we visited Marissa's ENT on Tuesday. That we discussed surgery. That she said she could do the bronchoscopy and surgery on the same day. That she will decide at that time what particular procedure she will do to reconstruct Marissa's airway to try to get the trach out about two months later. That this will be happening in three short months, in June. That I am cherishing every little noise Marissa makes because I am so afraid this surgery will change her sweet little voice forever and that makes me sad. That I am very scared of the increased risk of aspiration because of her reconstructed airway. That I am waiting for a call from the ENT's office so we can get this surgery scheduled. I could tell you about all this but I can guarantee a post or two totally dedicated to just this subject will be coming as soon as the surgery is on the books and the reality of it all smacks me in the face.

I could probably tell you about how frustrating it is to try to take a decent picture of the girl lately because, every time I pull out the camera, she flips out. Sometimes crying, sometimes yelling, sometimes just being silly and not cooperating. But I won't. I'll let the pictures speak for themselves:

Intentionally not looking at me when I say "look at the camera. Look at the camera, please. Marissa, please look at the camera."

The look I get when she does finally look at me

The looks I get when I ask her to smile

And now, for a little ray of sunshine:

Distracted:

Boisterous:

Rambunctious:

Well, I guess I had a few things to blog about after all!

Today is the Day, Take the Pledge!

2010-03-03T06:23:00.006-07:00

In the words of my friend, Debbie:

"Have you taken the pledge to stop using the R word yet??? What's holding you back? Do you not realize how offensive it is? People who are deemed medically retarded (yes, that's a real medical term) are still people. To hear that worded as a synonym for stupid is highly offensive to them, their friends and families, and anyone with any sense of decorum. GET RID OF THIS WORD!!!"

Please visit http://www.r-word.org/ to take the pledge to eliminate the derogatory use of the words "retard" and "retarded".

Intellectually disabled people often can not stand up for themselves to tell others how they feel about the use of the R word as a derogatory term. Please stand up for them, now.

No one should ever be made to feel less than they are.

We Knew Nothing

2010-02-24T07:34:00.015-07:00

Three years ago, we knew nothing.

We knew nothing of NICUs.

We knew nothing of ventilators, intubations, and extubations.

We knew nothing of dysmorphic facial features.

We knew nothing of Ativan and Fentanyl.

We knew nothing of corpus callosums and kidney problems.

We knew nothing of suctioning and saline bullets.

We knew nothing of congestive heart failure and Lasix.

We knew nothing of possible seizures, spinal menengitis, and lumbar punctures.

We knew nothing of PDA's and coarctation of the aorta.

We knew nothing of The Children's Hospital in Denver.

We knew nothing of doctor's rounds and nurse's compassion.

We knew nothing of Pierre Robin, tracheomalacia, and oral aversion.

We knew nothing of tracheostomies and g-tubes.

We knew nothing of DMEs and home equipment and supplies.

We did know about IUGR and a two vessel umbilical cord.

We did know about ventriculomegaly.

We did know about frank breech presentation and a scheduled c-section.

Compared to what we didn't know, the list of what we did know is very short. We were innocent. We were naive. We were ignorant.

But, more important than anything on either of these lists, was one more thing we did not know.

We knew nothing of the strongest love known to humans: the love between parents and their children. We knew nothing of how far we would and could go to make our baby better, how nothing else matters in the whole world when your child is sick. How "sleeping" in nothing more than a closet with a mattress was comparable to a five star hotel if it meant that we got to be across the hall from our sick little girl. We knew nothing of the love that would allow us to move Heaven and Earth to save our precious baby's life so that she could come home with us and live a "normal" life someday.

Three years ago, we knew nothing. And today, even though we know more than we ever wanted to about raising a special needs child, we are grateful for the education.

I made and posted this video a year ago in honor of Marissa's second birthday. A year later, just before she turns three, it is still poignant and sums up how I am feeling today.

Enjoy.

Celebrating the Bro-Dog's 30th Birthday!

2010-02-22T08:51:00.022-07:00

We had a blast hanging out with family this last weekend. My brother, Brian, and his girlfriend, Julia came out here from Grand Junction for the weekend. We celebrated Brian's 30th Birthday with a trip to Red Robin, laying around, and watching the Olympics. My sister, Michelle, and her boyfriend, Nate also came and spent the weekend with us. Marissa was overjoyed to have her Aunties and Uncles to play with all weekend. When Brian and Julia left, Marissa even gave her Uncle a hug and a kiss, which is huge for her!

Get ready for lots of pictures and a couple of videos documenting some of the fun we had over the weekend!

He is the smartest person I know!

Rissa eating with the big kids.

Michelle and Nate

Brian and Julia

"Here's a balloon! Here's a balloon! Here's a balloon!"

Sweet snuggle time with Auntie Chelle and Uncle Nate

Flashback Friday!

2010-02-19T08:33:00.006-07:00

20 Years

2010-02-12T09:27:00.001-07:00

Two decades ago, the first sentence in this little family's story was written.

Twenty years ago tomorrow, February 13, 1990, Jeremy asked me to be his girlfriend. We were only 14 years old and Freshmen in high school. So young, with so much ahead of us that we could not see, could not comprehend. What would have happened if God came down right then and told us what we would be doing in twenty years, the kind of life we would be living?

Let's just say I'm glad we couldn't see into the future; it would have been too much for our 14 year old selves to deal with. But here we are, twenty years later. And I can honestly say that God could not have chosen a better partner for me to weather this storm with. Things have not been easy by any means. We have gone through so much stuff in the last 3 years that has really taken a toll on our relationship. We are forever changed as a couple.

Gone are the carefree days when all we had to worry about was the crappy jobs we had, the crappy apartment we were living in, the crappy state of our bank accounts, and the crappy cars we drove. We have bigger and better things to concern ourselves with now. And, even though it is much more stressful than anything we have ever dealt with before, I am so glad we are where we are today. We have Marissa. We have each other. We are a family.

I can't wait to see what the next twenty years brings.

Jeremy, thank you for all you have given me over the years. I love you.

"The closer I'm bound in love to you, the closer I am to free."

Indigo Girls ~ Power of Two

Make video montages at www.OneTrueMedia.com

Rissa Roo and Her Family Too!

The Case of the Missing Blogger

First Decanaversary!!!

Our Big, Dumb, Not-So-Fun Adventure

It Sucks

Discharged!

Blessed

Surgery Done and We're Home

Closure

Every Day is a Dance Party!

To Our Girl On Her Fourth Birthday...

A Really Good Cry

Stand By For An Exciting Announcement...

Rissa Roo's First Field Trip

2010: The Year in Review

One Last Post... For 2010

Bah! Humbug!

School Days

Better Late Than Never

She's a Hippie Chick...

A Good Problem to Have

Left You Hangin'

Eulogy for a Trach

More Cute Trachless Pictures and a Video!

The Newest Member of the Naked Neck Club!!!

Someone Upstairs is Smiling on My Girl

Totally Aggravated

Staycation!

Why I'm Typing a Post at 3:00 am

Wordless Wednesday

Layin' Low

Lookin' Back...

Still On Track

Blogger's Block

Wait and See

Sucktastic!

Allergies?

Worried

Hot Fun in the Summertime!

The King of Her World

Good News and Bad News

What an Amazing Kid!

She's Home!!

Surgery

My Name Is...

Rissa's Poem

Rissa Roo's 3rd Homeaversary!

Swing High!

So Get Out Your Seat and Jump Around!

The Little Girl Who Had a Little Curl

Rain

Temper, Temper

Mother's Day Mish Mash

Let's Get Physical Part Two: Tuesday in the Park

Let's Get Physical!

Bad Blog Buddy

Cheated and Robbed

Lovin'...

A Party!

Every Kid...

Bummer!

Her Voice

Just For Fun...

My Shoes

What a Great Day!

Happy 3rd Birthday to Our Girl!

To Clarify

June 11

Not Much to Blog About

Today is the Day, Take the Pledge!

We Knew Nothing

Celebrating the Bro-Dog's 30th Birthday!

Flashback Friday!

20 Years