Growing and Learning

My little girl is growing up fast, before my eyes! So fast, I feel like I am going to miss something if I blink.

She learned how to climb up on the couch over the weekend. If you notice in past pictures, we had a lot of stuff on the back of the couch. This was because the back of the couch was one place she couldn't reach... yet. Yesterday we had to move everything off the back of the couch and out of the cubbies behind the couch because she can reach them now. Whew!! When did that happen??

She is showing us that we should never take what doctors say about her future as the gospel truth. We were told to prepare ourselves for the fact that Marissa might never walk, run, climb, talk, etc. The truth was that the "experts" just didn't know what her future held. The truth is that only One knows exactly what is in store for Marissa. The only expert that matters ~ God. He alone knows what she will accomplish in her life and we are relying on Him, and only Him, to show us. What a cool journey of discovery we are on!!

She is talking so much. Every day she learns a new word. Or two. Or three. Everyday she speaks the words she already knows more clearly. Everyday. Just last night I had a kitchen cabinet open. She saw a bag of microwave popcorn, pointed to it and said "popcorn"! Well, it came out more like "pahcone" but she said it! This is amazing because I hardly ever have popcorn in the house. I just picked it up a week ago when I was in a store and it looked really good to me. I have only said the word a few times and she said it and used the word properly. Every time she says something, my heart jumps right up into my throat. It was only a year ago that she started tolerating her speaking valve all day.


And yes, Jeremy and I are still trying to grasp the concept that we can not just say whatever word comes to our minds. Yesterday I was watching a news program about the state of the American economy and I got a little emotional. I used the word "a_ _ hole". Marissa repeated that word, to the best of her ability. Kind of came out like " ah-ole" It reminded me of the scenes in Meet the Fockers where the little boy keeps repeating that same word over and over again. Oops!

I will get better. I promise. After all, I am growing and learning too! :)

Picture Time!!

No news to report, but I realized we have taken a lot of cool pics in the last couple of weeks that I have not shared. Get ready for many many cute pics of our Rissa Roo!

Playing Uno with the big kids when Auntie Katelynn came to visit

Crazy poofy cool hair after taking it out of pigtails for the day

Look at her hair fly when she runs, too cute!

Yes, we are straight ghetto with the blanket hanging on the window. We do have blinds, but Mama likes it really dark for sleeping.

Big teddy bear ears

Threatening to yank off her PMV. She sure thinks she is funny!

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These next pics are for Nana and PaPa:

Lovin' the clothes Nana and PaPa sent for her birthday!!

Hooray for Nana and PaPa gifts!!

Lookin' good in the Carhartt overalls Nana and PaPa sent. PaPa said that when she goes to visit them and plays outside, no one will know she is dirty because the overalls match the color of the dirt at their house!! :)

First pair of Wranglers. She wasn't happy with me in this pic. You can see the little tear in her eye. Awwwww.... I told her to take the advice her shirt gives... Cowgirl Up!!! ;)

Wrangler booty

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I had to share these cute videos. The first two are of Jeremy coming home from work and how Marissa reacts. She sure is a daddy's girl!

This video documents how crazy Daddy is when he plays with Marissa. She absolutely loves it!

I just L-O-V-E her giggles. They can cheer me up no matter what mood I'm in!

It's Just a Word, Right?

Technically, yes.  

Retarded is a clinical term used to describe an individual with developmental delays and intellectual disabilities.  Medically speaking, mental retardation and retarded are still appropriate words to use.  However, more and more medical professionals are choosing to eliminate that terminology and use the more politically correct terms of developmental delay, developmental disability and intellectually disabled.

Unfortunately, the word retarded or retard is used more often in our society by people who are directing it at someone else as an insult.  The word is used to refer to a person who is acting stupid.   The word is used to shame someone, to indicate they are not smart. 

I will admit to using this word in the past.  I have used it in the same derogatory manner I described above.  I was wrong.

Marissa has not been described as mentally retarded, nor has she been labeled intellectually disabled.  She has been described as having some degree of developmental delay.  

Regardless, as a parent of a special needs child, I have come to recognize that using the "r word" in any way other than the clinical medical definition is wrong.  As a society, we have deemed certain words inappropriate.  For some reason, retarded and retard are still acceptable words to use as insults.

All I am asking is that you stop and think before you use these words.  Teach your children that the use of these words as an insult to someone is wrong.  Teach them that there are people in this world who these words apply to, that these people are human beings with feelings that get hurt, and often don't have the capability to defend themselves against insults.  Teach them to respect others who are different from them.

Make "respect" the new "r word".

Click on the link below to learn more.

Thank you.

Matters of the Heart

March 29, 2007 was my original due date for Marissa.  I had learned around 31 weeks that I would not make it to my due date because she was in distress and would need to be born a little early.  I came to grips with this reality.  When March 29th rolled around and Marissa was already two weeks and two days old, I felt a little twinge of sadness.  I knew that if things had progressed "normally" with my pregnancy, she might be just days old, or maybe not even born yet.  I was feeling a little sad and sentimental that day.  Until we got to the hospital.  Then those feelings turned to deep sadness and fear.

When we got to the hospital that day, we were told Marissa had to be re-intubated and was now in congestive heart failure.  In her case, because the valve that was supposed to close (PDA) had not done so yet, it had grown quite large and was shunting way too much blood into her lungs.  This caused her to go into severe respiratory distress as well.  She was essentially drowning because her heart was not functioning properly.  Our wait and see method had failed.

  

To complicate matters, the doctors suspected Marissa might have a Coarctation of the Aorta behind the PDA.  Colorado Springs does not have a pediatric cardiac surgeon that could handle the CoA, so the decision was made to transfer her to The Children's Hospital in Denver.  She was taken there via ambulance and Jeremy and I followed shortly afterward.  We were told by the docs in the NICU here in the Springs that they had spoken to a doc at TCH and briefed him on Marissa's condition.  Our doc was not sure if Marissa would go into surgery that night or if they would wait until the morning.

It was pretty late in the evening by the time we got to Denver and Marissa had stabilized.  It was decided to wait until the morning, which was Friday, to consult with cardiology.  Cardiology made brief rounds that morning and decided she was stable enough to wait until Monday morning to do anything more.  We were frustrated because she was sent to Denver to have surgery and now that she was there, they wanted to do more "wait and see", this time, 70 miles from home.  Ultimately, it was determined that she most likely did not have the CoA and she would have surgery to close her PDA on April 5th, a week after she got to Denver.  She got through the surgery and, as it turns out, she did not have a CoA.  Now, her heart is as healthy as anyone could have expected and she is thriving.

This morning, as I reflect on what was going on with Marissa's heart two years ago, another mommy who is struggling with her little one's heart condition is weighing heavy on my mind.  She calls herself MckMama and her son Stellan is not doing well today.  He was diagnosed in utero with severe heart problems and his parents were told they were going to lose him when he was 24  weeks gestation.  He survived and his heart condition turned around so much that, when he was born Oct. 29, 2008, they looked for evidence of the heart condition and found none.  He was healthy as could be.

Until last Sunday.  He was hospitalized for respiratory distress and then went into Supraventricular Tachycardia, or an extremely high heart rate.  The doctors have done everything to bring his heart rate down to no avail.  They are surprised his heart has withstood the danger thus far, but he is getting worse.  His heart will fail very soon if he can not be brought into a normal rhythm.  MckMama and her family are hanging on by a thread.  I can relate to this wonderful woman.  I feel her pain.  I have sat by my baby's bed wishing I could trade hearts with her.

Please pray for MckMama, Stellan, and the rest of the family.  Visit her blog and leave a message for them.  Pray that Stellan's heart goes into a normal rhythm very soon and they will not have to intervene surgically, which is extremely risky and does not have historically high rates of success for kiddos his age.

Thanks.

Unlike My Last Post...

...this post is dripping with sweetness and cuteness. Get ready for many adorable pictures and a couple of videos that should make you smile.

First though, in regards to my last post, I did want to clarify that, if Marissa is sick and waking up in the middle of the night, I am sympathetic. If she is crying and I can't figure out why, I am sypathetic. I know something is wrong with her and she is too uncomfortable to sleep, therefore I can't get upset with her. All of her teeth have already come in, so she is not teething, and she is not sick in any other way. She has just gotten in this really bad habit of waking up way too early and thinking it is time to play. She lays there with eyes wide open and plays. THAT is when I lose my cool.

I wanted to thank you all for your kind and encouraging words on my previous post. We did get sleep, things did get better, and the monster has not reared it's ugly head again since. It is good to know I am not alone when it comes to the frustrations of motherhood. Thanks again from the bottom of my heart.

And now, onto the cuteness...

You all know how I feel about sleeping babies (yes, she may be two, but she still is MY baby!)

Another outfit from Grandma Utah

Blue polka dots anyone? Love you Auntie Chelle!!!

Yet another outfit from Grandma Utah

Messy Occupational Therapy

She did this to herself, by the way

Possibly the cutest hairdo EVER!!!!

3:09 am

That is what time Marissa decided to wake up this morning.  That is what time Jeremy jumped out of bed in an attempt to put her back down. 

4:00 am.

That is what time I took over for Jeremy in my attempt to put her back to sleep.  Still awake. An hour after she first woke up.

4:45 am.

That is what time I finally blew my fuse and yelled at my daughter for not sleeping.  Not proud of myself at all.  Ashamed.  Bad mother.

I do not do well without sleep.  I lose my temper very quickly.  I hate this.  I feel like a monster.

Marissa does this often enough to make things very tense around here sometimes, but not often enough that we think it is a medical problem.  I have very close friends who are probably packing up to go home from a sleep study with their daughter as I type this.  A non-sleeping sleep study.  Because their daughter does not sleep very much at all.  Ever. 

I try to keep things in perspective.  I try to remember my friends who have not had a halfway decent night's sleep in so long, it would make your head spin.  For some reason, it does not help the way I would like.  I still lose my temper.  I still feel sorry for Jeremy, Marissa and myself for not getting enough sleep.  I still feel like a monster.

Sorry for this grumbling whining post.  I know there are many more people with much bigger problems.  Speaking of which, please pray for MckMama's son Stellan. 

Things will get better today.  I will try to keep the monster at bay.  Marissa will nap and so will I.  My ever-patient husband will probably fall asleep at his computer, almost hitting his head on the keyboard, and laugh to himself.  And, if his buddies see him do this, they'll all have a good laugh out loud.  We will get a better night's sleep.  This will all happen again, but things will be OK. Things have to be OK.  We have bigger battles to fight.

Busy Week

We have had a very busy week: 4 therapies, 1 dentist, 1 cardiologist, and 1 synagis shot.
Such is the life of a special needs kiddo!

The dentist visit went well. Surprisingly, this is probably the easiest of our many doctor's appointments. Marissa has visited the dentist three times. Each of those times, we have never waited more than a minute and a half in the lobby. They get us right back and into a chair. Then the dentist comes in and examines Marissa's mouth for about 45 seconds, with Marissa screaming her head off the whole time. Then he talks to me for about 5 minutes and Marissa calms down. Bingo Bango DONE!! Incredible!

G-tube fed kids have unique oral chemistry. They are at very low risk for tooth decay because they don't eat anything. Tooth brushing is recommended anyway, but they typically have oral aversion, so that does not always work. Also, because nothing passes through their mouths, they tend to have really bad tartar build up. We try to brush Marissa's teeth with varying degrees of success. Some days she won't let us get in her mouth at all. Some days, she'll let us brush but she constantly gags. Some days she does not have a problem with the toothbrush at all. Because of the sporadic nature of her tooth brushing, I was expecting the dentist to tell us she had massive tartar build up and would need to have it removed under anesthesia. To my delight, he said quite the opposite! He said there was no excess tartar and he just wants to see us back in 6 months!! YAY!!

The cardiology appointment went well also. Marissa was born with a PDA (Patent Ductus Arteriosis). There is a valve in the heart that is supposed to close at birth. Her valve stayed open. The doctors gave her three weeks to see if it would close on its own. It did not, so she had surgery when she was three weeks old to ligate it (put a clamp on it). She also has some other minor heart abnormalities, none of which should ever cause her problems in her life. However, they do need to be checked on periodically to make sure they are not getting bigger or worse. So yesterday, we went to the cardiologist to have an echo cardiogram and an EKG. Marissa did really well through the echo, which is an ultrasound of her heart. The EKG is where they put stickers all over your chest, put clamps with cables on the stickers and take a reading. By the time they were ready to do the EKG, Marissa was done! She threw a major fit. Luckily it is a quick test and as soon as she is still for a second, they take the reading and they are done.

The doctor said that every thing with her heart is status quo. He said he feels comfortable seeing her in a year and a half instead of a year. If she looks good at that point, he will see her two years after that, and so on. YAY again!! She will always need to be followed by cardiology, but the longer between visits, the better!

She got her synagis shot this morning, which is always an ordeal. Synagis is usually reserved for preemies their first year of life to prevent RSV. But airway kids are also susceptible and so most get it as long as they have airway issues. The shot is administered once a month, usually from October through March. Because of insurance dragging their feet this year, Marissa did not start her course until November, so she has one more month to go. Poor girl is big enough that she has to get two shots a month, one in each leg. She gets over it pretty quickly, so that is good.

As far as therapies, Marissa usually has three a week: Physical Therapy and Occupational Therapy on Wednesday, and Speech Therapy on Friday. Last week, this week and next week, Marissa has Speech on Monday as well to make up for sessions she lost when she was sick last month. As it stands right now, we are waiting for speech in about 30 minutes and then we are done for the week! Whew!!!

Lastly, I thought I would share pics of two more very cute outfits that Grandma Utah sent Marissa.

A very rare shot of Marissa with her hair down. Her hair is so fine that if I do not pull it back, it is constantly in her face and she spends the whole day brushing it away. I can not bring myself to cut it yet!

These gaucho style shorts are just too cute!

Future opera singer???