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!

Rissa Roo's Fabulous Birthday Party!!

It's raining birthday wrapping paper!

Photo and video editing at www.OneTrueMedia.com

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!!

Love, 

Mommy and Daddy

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!  ;)

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!

My Love

I know that it is still a week and a day until Marissa turns two, but I just could not delay posting this video any longer.  I have had this particular montage in mind for several months now.  I wanted to do this in honor of Marissa's upcoming two year celebration.  I have been putting it off because  1.  I had plenty of time and  2.  I needed J to help me convert our 8mm videos to mpeg.  Of course, in the meantime, a couple of my blogger friends beat me to the punch! (Go check out Debbie's and Michelle's montages, they are awesome!)

There are a lot of moments in Marissa's 2 1/2 month NICU stay that we did not capture on film, for whatever reason.  Sometimes, we just didn't remember to bring the camera.  Sometimes, things were just too hard and scary to film.  For example, we only took pictures and video of her on the ventilator the first time.  She was intubated ten different times, two of those being emergency re-intubations after she self-extubated.  Each time she was intubated, another piece of my heart broke.  It was just one more setback, one more time to have to see her drugged up so she wouldn't "fight the tube", one step closer to the trach.  We didn't exactly feel like documenting the experience at the time.

Looking back through the videos, I wish we had more of that time captured on film.  I will always have the memories  burned into my brain, but I find it so cathartic and therapeutic to be able to watch videos and see where Marissa was compared then to where she is now.  

OK, enough said.  Grab a whole box of tissue and enjoy...

Make video montages at www.OneTrueMedia.com

This is OK to Post, Right?

I mean, I can post pictures and videos of my nekkid baby as long as she is still a baby right? I mean, she's still a baby until she officially turns two, right?

RIGHT???!!!???

OK, I'm only a little anxious and sad about my baby being "one and some change" for only ten more days.

But... until then, here are some ultra cute, nekkid, wearin' only a diaper, totally appropriate to post on the internet 'cause she's still a baby... pictures and video.

Just had to do it.

Showin' some belly button love!

Now, I know we have all seen many Marissa dancing videos in the past and I apologize if it is overload for some of you. I could not resist this one though. Plus, given that we were not sure when Marissa would walk, let alone dance, and she finally did walk the day she turned 20 months old (in this video), I can't get enough of these kinds of videos. I am dancing for joy right along with her!!