The Music in Her

I am breaking my blog silence to post a Proud Mommy moment.  Marissa was selected to be her school's Student of the Month for January!  Her music teacher nominated her, saying she was recognizing Marissa for her "demonstration of responsible behavior by participating in music activities, always being excited to learn new things and tackle new challenges.  She is always excited to learn more about music."

This really comes as no surprise, as we have always known Marissa was born loving music deep down in her heart and soul.  Late in my pregnancy, when she was trying to kick her way out of me, Jeremy would play his acoustic guitar, very lightly and beautifully, with the neck gently resting on my belly.  She would instantly calm down.  Then, we discovered her favorite song when she was about six months old: Bob Marley's "Three Little Birds".  We found when she was super stressed at a doctor's appointment, which she had more than anyone's fair share of in her first 3 1/12 years of life, we could calm her down by playing her favorite songs.  Her Auntie Chelle got her a little pillow with a speaker and plug in for our iPod.  We took that thing everywhere we went for a long time.

Music touches Marissa very deeply.  You know the goose bumps you get and the tears welling up in your eyes when a particularly beautiful piece of music finds its way into your soul?  She was experiencing that as early as a year old.  Every time we played Nickel Creek's "When You Come Back Down", she would start crying.  Not even crying really.  More like heavy, emotional sobs.  She couldn't understand the lyrics; she had that reaction simply because the music was so beautiful to her.  There are a few other songs that cause that emotional reaction in her even today.

She loves to hang around Daddy when he plays his guitar and he looks forward to the time when she can concentrate long enough so he can teach her to play, like his mom taught him.  She is in love with The Indigo Girls' "Power of Two" because it is the song I created an anniversary video around for Jeremy and I and it reminds her that her parents love each other.  She calls it "The Married Song".  She trembles and gasps with intense anticipation when I agree to play videos of her current favorite artist, Katy Perry.  She loves just about all of her parent's music, which is a pretty diverse list.  She headbangs to Five Finger Death Punch and Killswitch Engage, jams The Black Eyed Peas and swoons to Sarah McLachlan.  And, it really goes without saying, but her love of dance is very well noted by all who know her and her moves are legendary!

We have and will continue to foster and encourage Rissa's love of music.  I don't think we will have too tough of a job, considering all the talented musicians we have right in our own family.

"If music be the food of love, play on" ~ William Shakespeare

Dear NICU Nurse...

I came across this blog post and I felt I had to re-post here.  I want to remember the words this blogger wrote.  They come from my heart as well.

I first read this last night, September 13, 2013.  It just happened to be exactly six and a half years, to the night, since we first met our girl's NICU team.

Here is the link:

http://www.preemiebabies101.com/2013/09/dear-nicu-nurse/

Please read.  It will touch your heart, even if you've never 
experienced the NICU firsthand.


And here's a current picture of our sweet Rissa Roo, at six and 
a half years old and in the 1st grade.  
In case anyone out there is still reading and we're not friends 
on Facebook.  She's growing up too fast.

Keeping it Alive

I don't know that anyone is out there anymore, but here goes.

As you can see, this is my first post for the year.  And guess what?  I'm only popping in for a quick "Hello!" and to say I'll be back soon to update on what we were up to in 2012.  I heard a rumor that if you don't use your Blogger account at least once a year, they shut you down.  I don't know if that's true but I don't want to risk it.

So here I am, keeping the blog alive.

And with that, I'll be back soon!

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...

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!

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!

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.