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

Thursday, December 29, 2011

The Case of the Missing Blogger

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...


Monday, September 19, 2011

First Decanaversary!!!

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!

Thursday, August 4, 2011

Our Big, Dumb, Not-So-Fun Adventure

**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!

Thursday, July 28, 2011

It Sucks

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.

Wednesday, June 15, 2011

Discharged!

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!

Sunday, May 29, 2011

Blessed

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!!


Can't you just feel her joy?

Tuesday, May 10, 2011

Surgery Done and We're Home

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...

Wednesday, May 4, 2011

Closure

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!

Wednesday, March 16, 2011

Every Day is a Dance Party!


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

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

Sunday, March 13, 2011

To Our Girl On Her Fourth Birthday...

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.

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

Monday, March 7, 2011

A Really Good Cry

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...

Wednesday, February 16, 2011

Stand By For An Exciting Announcement...

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?

Monday, January 31, 2011

Rissa Roo's First Field Trip

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". :-)

video


Monday, January 3, 2011

2010: The Year in Review

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!