"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

Tuesday, March 31, 2009

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.

Sunday, March 29, 2009

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.


Thursday, March 26, 2009

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!!!!

Tuesday, March 24, 2009

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.

Friday, March 20, 2009

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???

Wednesday, March 18, 2009

Talkin' About Talkin'

Below are pictures of just one of the many pretty outfits Grandma Utah sent to Marissa for her birthday. She sure has great taste! Thanks Grandma for all the cool clothes!

Marissa has been trying to develop words for a long time now. She has been able to tolerate her speaking valve (PMV, which is the purple piece on her trach) for just over a year now, which means that for nearly the first year of her life, she had no voice. So, considering that, she is doing really well at talking. She can say many simple words clearly and really does attempt to say almost everything we say. She has gotten very good at mimicking. So good, in fact, that mommy and daddy are really having to watch what we say! For example, the other night I said "crap!" and I heard a little voice behind me call out "rap!!" Oops!

It seems as though her speech has really taken off in the last week or so. Her speech therapist was here on Monday and she and Marissa read a book together. The therapist would say a word and Marissa would repeat it, not in perfect form, but she was still speaking. I love hearing her attempts at speech. It really touches me that she tries so hard. One of the most heartbreaking things we had to realize when we were told she needed the trach was that she was not going to have a voice. At least not until she was strong enough to use the PMV, and no one could give us a timeline for that.

Parents of a typical child might occasionally want a mute button for their child (believe me, I know what that is like, having grown up in a family of seven kids!). Marissa has a mute button, but I refuse to use it (simply taking the PMV off). Her voice and attempts at speech are just that precious to me. I get sad when she gets sick because she is not strong enough to use her PMV and I miss hearing her sweet little voice.

I shot this video this morning to try to demonstrate some of the words Marissa can say. Some of what she says is hard to understand, but the try is definitely there. I tried to shoot several different videos to demonstrate all the words she knows, but she got to a point where she was tired of performing!

Sunday, March 15, 2009

Rissa Roo's Fabulous Birthday Party!!

It's raining birthday wrapping paper!

Friday, March 13, 2009

Happy Birthday Marissa!!!

Dear Marissa, 

Two years ago tonight, at 10:20 PM, you came into our world.  We were so happy to finally meet you and we loved you unconditionally the very moment we saw you.

These last two years have sometimes been scary, hard and frustrating.  But we choose not to remember those times because you have blessed us with so much more.  We choose to live in the laughing, dancing, snuggling, smiling, learning, hugging, kissing, happy times.  These moments are far more numerous and memorable.

You have taught us so much in the last two years.  Most of all, you have taught us about hope, faith and unconditional love.

We love you so much Marissa Lynne.  Thank you for showing us what true love really is.  

Happy Birthday Punkin Pie!!

Mommy and Daddy

Wednesday, March 11, 2009

The Light at the End of the Trach Seems Further Away...

Well, I took Marissa to the ENT yesterday.  Everything is fine, but I walked away with a strong feeling of disappointment.

I guess I'd better give a little back story first.  Marissa was originally trached May 9, 2007 for a number of reasons.  The repeated intubations had caused some swelling and damage that would not heal until she was able to get the vent tube out of her throat.  She also had tracheomalacia. This is where the cartilage in the trachea is not fully formed and is floppy.  It allows the trachea to collapse and obstruct airflow.  Kids usually grow out of this and it takes anywhere from a couple of months to a couple of years.  Marissa also has what doctors call a Pierre Robin type lower jaw.  In her case, her jaw forces her tongue back into her airway, especially when sleeping. This condition is also one that she just needed time to grow out of.  As of last August, all the issues Marissa was trached for had resolved except for the lower jaw.  Dr. P told to let Marissa grow over the Winter and we could see if the lower jaw issue had resolved  and possibly decannulate in the Spring.  If her jaw had not grown enough, Marissa would need jaw distractors and would not decannulate until the Summer of 2010.  Jeremy and I, as well as Dr. P, have been pretty confident that we have noticed Marissa's lower jaw growing significantly over the last year and chances were pretty good for a decannulation this Summer.

OK, enough history, on to our appointment yesterday.   First, I am concerned about Marissa's doctor.  She is not seeing patients right now because she is on bed rest.  I did not ask for what, but I am assuming pregnancy.  I hope and pray that everything will be all right with her.  Marissa's ENT is one of our favorite doctors.  She loves Marissa and the feeling seems mutual, which is saying a lot on Marissa's part!  She doesn't like ANY doctors!  Dr. P genuinely cares about Marissa and her overall well-being and health.  Please pray with me that she will be OK and back to seeing patients again soon.

Because she is not seeing patients, we had to see a doc whom we have never met before.  We met him yesterday and he seems nice enough.  I spoke to him about Marissa needing her tonsils and adenoids taken out.  He looked down Marissa's throat and confirmed that she would need a T & A.  (tonsillectomy and adenoidectomy)  He said he could do the surgery or we could wait for Dr. P to come back.  He made sure to let me know that no one knew when she would be back.  I told him we would like to have it done sooner rather than later, knowing Spring and Summer are on their way and she will need the procedure before she is able to get the trach out.

There is  a general consensus among doctors in cold-weather states that decannulation (taking the trach out for good) is reserved for the warmer and healthier Spring and Summer months.  If we do the math, we only have about 6 to 7 months, at the most,  to work with as far as decannulation goes.  She will have to recover from this latest surgery, and then have her trach capped (so she breathes exclusively through her mouth and nose around the tube) 24/7 for any where from 1 to 3 months.  This timeline is based on the best case scenario that her jaw has grown enough.  Even then, this doctor said he would not feel comfortable decannulating Marissa and wants to leave that decision up to Dr. P.

To complicate matters more, Marissa was diagnosed at birth with a condition called Choanal Stenosis of her left nasal passage.  This means that her left nasal passage is narrowed, the doctor estimated about 70%.  While he said at the time that this was not significant in relation to her breathing problems and was not a reason she needed the trach, she would need it repaired at some point in her young life, maybe around age five.  

It is common knowledge among trach parents that surgeries that may require intubation are very scary in a kid who used to have a trach.  Very often, there is scarring and narrowing of the child's airway already and sometimes the child's airway has been surgically reconstructed.  This all leads to the risk of the intubation not going well and the child needing to be re-trached.  It is for this reason that parents are advised to have all surgeries that they know their child will need taken care of before decannulation.  

Therefore, in my uneducated opinion, Marissa needs to have the surgery to open up her nasal passage before she is decannulated.  I addressed this issue with the new doc yesterday and, once again, he wanted to defer that decision to Dr. P.  Very understandable because he does not know Marissa like Dr. P does, but frustrating on my part. 

All of this to say that, while Jeremy and I have been hoping for the last year that Marissa would get the trach out in the next six months, we have been preparing ourselves for the possible reality that it won't happen for at least 14 to 18 months instead.  All hope is not lost that a miracle could occur in the next six months that would lead to decannulation, but yesterday's visit just brought the longer timeline into much sharper focus for us.  We can definitely handle another year with the trach, but we are still disappointed.

I will end this very long post by letting you all know that I just scheduled Marissa's T & A for April 13th.  It is normally an outpatient procedure, but because of Marissa's complex medical situation, the doctor wants her observed overnight in the hospital.

Oh goody, another surgery to start fretting about!  ;)

Monday, March 9, 2009

Out To Eat

For the first time in a long time, we decided to venture out as a family this evening.  We went to a Mexican restaurant down the street and had a good time.  Marissa was a little unsure at first.  In fact, when we tried to put her in one of those wooden high chairs, she freaked out, so we asked to be moved to a booth so she could sit on the bench beside Jeremy.  I'd like to think that she just decided she wanted to be a big girl and did not need to use the high chair like a baby.  However, I know the truth is that she was overwhelmed and scared of the high chair.  She was scared by the fact that she was not in her familiar environment. 

One of the things I struggle with the most in having a special needs child is not being able to do "normal" things like "normal" people.  I have written about this before, so this should be nothing new to most of you readers, but I know I have some new people on board, so I'll explain what I mean.

Because of Marissa's  trach, we have to do a lot of things very differently than most people just to go out.  First, we have to take her suction machine and supplies for an emergency trach change, in addition to the things one would take for a typical two year old.  

Second, because of her "open" airway, we have to be very cautious about where we take her, when we take her, and what she touches while we're out.  We have essentially secluded her at home since October (aside from doctor's offices and a few other exceptions) and we are probably taking a risk taking her out even now because it is still considered "respiratory season".  We have to take antibacterial wipes and wipe down everything she might touch.  We rub her hands with antibacterial gel when we leave.  I can only imagine what I must look like to other patrons wiping everything down like a germaphobe.  But I have to be a germaphobe for my daughter's sake.  I don't have a choice.  I would not act this way if it weren't for her compromised immune system.  I would be able to allow her to catch a cold and not be in fear for the next several days that she could get significantly worse and need to be admitted to the hospital.

Third, because we seclude her to keep her away from the germs, she is somewhat stunted socially.  I don't think it is severe, but it is noticeable.  She is not used to being around a lot of people.  Even though we socialize her as much as possible during the "healthy" months, she forgets in the months in between and gets overwhelmed and overstimulated when we do go out.  I don't really know of a work-around to this problem.  I don't want her to be limited by her differences, but she is.  This frustrates me.  

How do you raise your special needs child in a manner that does not cause her and everyone around her to be acutely aware of her differences?  Ever since we knew she was going to have certain special needs, I have wanted to be that kind of parent who says, "we don't treat her any differently than we would if she were typical".   Unfortunately, if we don't treat her differently, she runs the risk of getting very sick. 

She is getting older and will soon start to become curious as to why she has to do things a different way than others she sees.  We think she might get the trach out this Summer but if not, definitely by next Summer.  However, she will have the g-tube quite a lot longer than that.  We will have to find a way to explain to her why other kids she sees eat with their mouths and not with a tube in their stomachs.  We will deal with it when the time comes, like we have dealt with everything else, but it saddens me that someday she will come to realize that she is different.

Having said all that, I did not start typing this post with the intention of complaining about being a special needs parent.  I did really want you all to get a kick out of the pictures we took while we were out.  So here you go:

She loves to take tastes of things that we eat.  At least we know she will enjoy eating once she learns how and can do it safely!

I just had to post this picture because of the look on Marissa's face when she is loving on her baby.  She sure loves fiercly!

I thought this was funny because she decided she would try to squeeze behind Daddy's back.  She kept trying for several minutes, thus giving her dad a short time to eat mostly uninterrupted.  Too cute!