"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, August 28, 2008

Baby Steps

Marissa took her first unassisted steps the other day!! And she stood unassisted for 5 seconds (thanks for the help Auntie Chelle!). That might not sound like a lot, but for her it is huge.

She only feels comfortable walking back and forth between two people at this point and really only takes two steps at a time, but we'll take it. I think part of the reason she is not walking more is a lack of confidence. It is really funny to watch. Her facial expressions say it all. We'll start her off by having her stand facing one of us, with the other one of us behind her holding her hands. She'll have a smile on her face and when she feels us let go of her hands, she gets a look of panic on her face. Then she figures out it is not so scary and with the coaxing of the person in front of her, she starts moving her feet. She'll take her two steps, stick out her little bottom to balance herself, and reach far out in front of her for the other person's hands. Then if we don't reach out to her, she'll plop down on her bottom, sit there and look at us as if to say "well, did I do it?". We'll start clapping and whooping it up and she beams so proudly! The other night we played this game of catch for five minutes. We will try to get video of it to post but, as you can imagine, it is hard to capture since both Jeremy and I are playing catch.

I also think that the assistance of the AFO's (Ankle Foot Orthodics) or leg braces as we call them, are greatly responsible for this new skill. Marissa has many issues with her muscles, ligaments and joints not working properly, even sometimes working the opposite way than they should. Her physical therapist has done a phenomenal job with her, but she still needs some manipulation that she can't give her. We actually picked the AFO's up at the beginning of the summer, but due to multiple problems with them breaking and not fitting right we have not been able to use them properly until recently. We add an hour each week to her schedule to get her to tolerate them and ultimately she will wear them for 8 hours a day . Next week we'll be half way there with her wearing them for 4 hours.

Here are a couple of pictures and a video of her wearing her braces.




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Saturday, August 23, 2008

Montage Madness!!!

At the risk of going overboard with videos and sappiness, I am adding two more montages. I realized that having started this blog nearly 1 1/2 years into Marissa's life there are a lot of pictures I wanted to share with everyone and this method was the best way I could think of (inspired by my friend Jen). So, with the exception of a couple of older digital camera videos I will share at a later time, you are now up to date with Marissa in Pictures.



Enjoy!!


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Wednesday, August 20, 2008

Cry first, then smile and laugh!

These videos have been a long time coming. Enjoy, but get some kleenex first!

This one is from when Marissa was in the NICU, with the last picture being the day she came home.

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I decided to put a bunch of cute and funny pictures of Marissa to her absolute favorite song of all time...

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Saturday, August 16, 2008

Brrrrr!!!



In typical Colorado fashion, yesterday threw us into a three day cold snap... in the middle of August! It has been rainy and cold, low 60's and today, low 50's. I actually had to go shopping today for warmer clothes for Marissa. I realized she had grown so much since it was cold last that she has nothing warm to wear!




I also bought Marissa her first "big girl" item. A forward facing car seat!! Her infant seat can carry up to 22 lbs and a forward facing seat has a lower limit of 20 lbs. Since she is about 22 lbs now, it was definitely time to have her face forward. The one I bought was pretty expensive but it is 3-in-1. It ultimately converts to a booster seat that accommodates up to 100 lbs. It looks like a jet airplane seat! We took Marissa for a ride and she was thrilled. She had a huge grin on her face the whole time! She was so excited to finally be able to see where she is going!!! We also had to buy a baby gate because she has learned to climb the stairs. When I was in line at Wal-Mart, the lady in front of me saw the gate and seat in my basket and asked me if I was going to a baby shower or if I have a new baby myself. I said "Neither, my baby turned into a toddler overnight!"




She is growing up way too fast. I already miss her being a little baby!!

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Monday, August 11, 2008

A Day for the Trachies!

Yesterday we had a great time meeting up with some fellow trach families. We met in a park in Denver and had a blast getting to know everyone and swapping stories. We had taken Marissa to Denver a couple of times before for doctor appointments but this was our first trip there for fun and we survived! We are finally getting more comfortable taking her places. Maybe now we can venture even further!
It meant so much to us to be able to meet other people who understand exactly what we go through on a daily basis. Thanks Jen for putting it all together!


(L-R front row) Marissa melting down, Faith chillin', Milo hangin' out, Noel upset
(L-R back row) happy mommies: me, Jen, Janay, Tina
Marissa still melting down, Faith trying to console Marissa, Milo still hangin' out, Noel still upset
Marissa still melting down, Faith trying to tell Milo to stay, Milo saying "you girls are too dramatic, I'm outta here!!", Noel also trying to convince Milo to stay!


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Saturday, August 9, 2008

First time capping...

We tried capping Marissa's trach for the first time tonight and the result is evident...

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She seems to do well for a while. It helped that we had her all time favorite song playing to distract her. (Bob Marley's "Three Little Birds") She does get to a point where she has had enough but it is obviously a HUGE step that we can put it on her even for a little while.

Thanks for checking in!

P.S. We have had it on her for a full 15 minutes now. She is tolerating it, but needs to learn how to manage her secretions now that she can't cough them out of her trach.

Friday, August 8, 2008

Update from recovery room 1759

Marissa came out of the procedure after about an hour. She did well. Her hearing is 100% and the ear-tubes are in place. The doctor was about to down size the trach, but when she pulled the bronchoscope out, her epiglottis flopped over her voicebox. Can you say, "Floppy Epiglottis" three times fast? This is caused by her recessed jaw. So no downsize yet but she did say that we can do capping trials during the day, as long as we monitor her closely. Because her trach is the same size and she will have to breathe around the tube, we are not sure how well capping will go, but it is worth a shot. Eight months ago, we didn't think she would be able to tolerate the PMV and now she wears it all day. You never know until you try! The doctor said that Marissa's airway and jaw structure look better than when she did her last bronch in April. So all in all, good outcome though not exactly what we were looking for. But of course our first priority is Marissa's health and safety.

Marissa is back to her normal, feisty self. Thank you all for your prayers.

Thursday, August 7, 2008

Please pray...




Tomorrow is Marissa's bronchoscopy, tympanostomy and hearing test. I am asking prayers for several things. Please pray...

1. for the procedure to go well and for Marissa to recover quickly. While this is a routine procedure, she has to be under general anesthesia, which always carries its own risks.


2. that she passes the hearing test with flying colors.


3. that the ear tubes do their job.


4. that the doc downsizes her trach and allows us to start capping. This would be a huge step toward decann (getting the trach out). Jeremy and I feel strongly that she is ready for this. She has shown us several signs she is ready and we also have very strong mommy and daddy gut feelings.


5. for a restful night tonight. We have to get up very early tomorrow morning to be at the hospital by 5:00. The procedure is scheduled for 7:00 a.m.


Thank you all in advance for your prayers. I will update as soon as I can tomorrow

Monday, August 4, 2008

Yay Brunch!!

Yesterday Michelle, Jeremy, Marissa and I ventured out to our favorite local breakfast spot, the Omelette Parlor. Marissa acted like the little rock star that she is. She smiled and waved to the other patrons and blew kisses to the lady at the cash register on the way out the door. Everyone just thought she was the cutest little angel. Jeremy says that what they don't see are the devil horns that are hiding under her pigtails!! ;)











Sunday, August 3, 2008

No news, just pictures

We have nothing new to say so just enjoy some recent pics and vids...



Daddy's lil' redneck

"I love my Auntie Chelle"
At Garden of the Gods

Little girl in a big chair
Sleeping Beauty


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She loves getting tiny tastes of yogurt. Hopefully we will soon be given the go ahead to give her more than this.

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