T & A Time...

UPDATE:

Marissa came out of surgery at around 10:30.  She did really well and the doctor does not see any reason to keep us overnight.  We just got back to the outpatient surgery recovery room and she is alert and happy.  She is playing with the TV, turning it off and on.  :)  We should be outta here in a couple of hours!

Dr. P scoped her in the OR and came back with some very encouraging news:  Marissa's jaw has advanced enough that she won't need jaw distractors to pull it forward.  YAY!!  

Here is where it gets a little complicated.  Dr. P is due to have the twins at the end of August. She is only planning on taking 6-8 weeks off for maternity leave.  In the meantime, she wants Marissa to recover from the T & A and then we can start capping.  We'll see how she does over the summer and then do another bronch in October.  If she looks good then, Marissa will be decannulated. I asked Dr. P about the general consensus that decans don't happen in Fall/Winter.  She shrugged her shoulders and said we'll play it by ear, that if Marissa will be ready at that time, we'll throw the theory out the window and decan at that time.  She wanted to give her 6 months for he jaw to grow even more.  She feels very good about the progress of Marissa's jaw since she was last bronched 8 months ago and she feels confident that she will progress enough in the next 6 months that she can successfully decan.  

So, no decan this summer.  :(  But decan in the near future  :)

Whew!!  Information overload!

Thanks again for all your prayers.  We have felt the comfort of our family and friends praying from afar!

ORIGINAL POST:

Once again guys, get your minds out of the gutter!!

Marissa just went back to the OR with Daddy.  The procedure should take about an hour. 

She got Versed about a half an hour ago and was trippin' out watching Sesame Street.  (video to come later!  ;)  

I'll be adding updates to the beginning of this post as we know more, so check back through the day.

Thanks for your prayers and well wishes!

Urgent Prayer Requests

Please pray for little Stellan and his family tonight.  He is being sent to Boston for more concentrated care for his heart.  Please pray for safe travel, God-guided doctors and that he will not need surgery.  Pray for God's peace and comfort for his family.

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You all should be familiar with a sweet little girl named Emerson.  She lives just up the road from us in Monument but she has been in Omaha NE for almost a year now because of a multiple organ transplant.  You'll remember that her family also struggled at the beginning of the year with insurance and Medicaid coverage.  She received her transplant in June, but things went drastically wrong and now she needs a second transplant.

Her family just got "the call" that organs have been donated to Emerson for her second life-saving transplant.  I am shaking and in tears as I type this.  She is going to receive her new organs TONIGHT!!

Please pray for sweet Emerson, her family, and the team of doctors and nurses who will be saving her life tonight.  Please visit her site by clicking on the above link and leave a message of prayer and encouragement by clicking on the guestbook button.  It is still going to be a long hard road ahead for this little girl and her family.

Please also pray for the family of the donor who gave the ultimate gift.  They are in agony tonight and need to feel Jesus' arms holding them tightly.

Thank you.

Technical Difficulties

UPDATE:

Our internet crapped out on us over the weekend and we have to install a wireless router, which is Jeremy's area of expertise.  We are having the hardware and software shipped to our house via snail mail, so it should be here by Thursday or Friday.  Of course Thursday we will be preparing to go to the hospital (not to mention a pulmonology appt and a synagis shot!) and Friday we'll be in the hospital.  I have been whisking myself away once a day to the Einstein Bros down the street, sitting in their parking lot and hopping on their wi-fi.  Pretty pathetic ;)   

So, I am checking e-mails and blogs once a day.  But if I don't comment, just know that I ran out of time for the day because my lovely two year old who woke up at 2 am this morning is making her father literally pull his hair out and I need to run home and rescue him!!  Whew!

I will be able to update via e-mail and the blog on Friday by hopping on the hospital's wi-fi, so check back then.  Thanks!!

ORIGINAL POST:

Hey all, I am currently having computer problems. I am on Jeremy's work computer right now, but I will not have access to it after tonight. My computer should be fixed by the end of the week, so if you don't hear from me, don't worry. Of course, we will be in the hospital on Friday, bright and early. If I am still not able to use my computer by then, I will have my sister update the blog as she is able. Those of you with my e-mail address can e-mail me. I will also have my sister check my e-mails for me.

I will continue to pray for all of you, and we would appreciate all your prayers for Marissa on Friday as well.

Love to all!

There Will Be a Day

There is a really great song called "There Will Be a Day" by Jeremy Camp. If you are not familiar with the song, please click on the link below and listen. The song (or a particular lyric from the song) is integral to this story.

Even if you are familiar with the song, I highly recommend you click on the link anyway and watch the video in fullscreen mode.  Someone took the song and added some very beautiful images to it.  It will really get you in the right mood for this Easter weekend!  :)

http://www.youtube.com/watch?v=l6ccS7r8pMU

Now for the story:

Marissa hates to be suctioned. We have to use this awful contraption my friend Hope has lovingly dubbed "evil thing".


We have to squirt saline down her trach to break up the junk and then stick this tube down her trach to suck the saline and the junk out.

I understand suctioning her trach has got to be uncomfortable.

We have to lay her down and sometimes restrain her just to do this.

I apologize for the poor quality of the video. It was too dark for the camera to focus correctly.

She used to not mind the process so much. She started throwing fits around the time she got pneumonia in February. I think it really bothers her to be suctioned when she is sick. It hurts to cough and we have to suction so much more often. I think she has just developed a habit of fighting every time we have to do this.

Every time.

Thankfully now that she is wearing her PMV all day, we only have to do this when we take the PMV off which is only a couple of times a day.

This morning I needed to suction her and, as with any unpleasant experience Marissa has to go through, it is made better by playing music or a video. Jeremy Camp's "There Will Be a Day" came on, but Marissa still fought me. She fought me so much (what you see in the video above is mild) that I had to put my leg over her body and contort my own body just to get the job done. As I was doing so and as I was thinking about how I hate what I have to do to her and to myself just to suction her, the lyric "there will be a place with no more suffering" came on.

Now, please don't think that I am trying to make light of the song or its beautiful meaningful lyrics, but when he sang that line, I heard "there will be a place with no more suctioning". Seriously. And I had to laugh to myself. And then I laughed out loud.

Sometimes my doom and gloom attitude and my pessimism gets to me and I think we might never get rid of the trach. Marissa's trach brings with it so much extra stuff, so many extra tasks, so much extra unpleasantness. When I heard that line and converted it in my head, it reminded me that all of this is temporary. I know of kiddos who will never get rid of their trachs. But this song reminds me that there will come a time when we will all be whole, a place where trachs and suctioning will be no more.

There will be a day.

Well, That's Cool, But... Dang!

UPDATE:  

Prayers answered!  Marissa's surgery is now scheduled for Friday April 17th.  So, only a few days after the original date AND its on a Friday instead of a Monday.  This is great because I will have Jeremy at home to help me with her and her recovery.  Woo Hoo!

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Original Post:

OK, got a change of plans.

First of all, thank you all for praying for Marissa's ENT, Dr. P. From information I received secondhand, she is about four months pregnant with twins and was having some difficulty so she was put on bed rest. She is apparently better now and is seeing patients in the mornings. She is also performing surgeries when needed.

This morning we had Marissa's pre-op visit with Dr. K who was going to do her T & A in place of Dr. P. I use the words "had her pre-op visit" loosely. Dr. K came into the room this morning for the 8:30 appointment and proceeded to let me know that Dr. P was back in action and that he would much rather her do the procedure. He sees older children and mainly adults, so he does not have much experience with peds. Or trachs. He also felt Marissa would fare better with someone she knows and who is familiar with her. I, of course, want her surgery done by someone who feels they can do the best job possible, so I am perfectly OK with his decision. Thus, we canceled Marissa's T & A for April 13th.

Dr. K consulted with Dr. P this morning and she thinks she can put Marissa on her surgery schedule in the next couple of weeks.

First, I am very happy that Dr. P's pregnancy seems to be going better, well enough for her to see patients and perform surgery. What an amazing blessing! Please keep praying that her pregnancy progresses normally from here on out.

However, I wish Dr. K would have consulted with Dr. P and made the decision for her to do Marissa's surgery before I got my behind up at the butt crack of dawn this morning. Before I got Marissa up at the butt crack of dawn this morning. Before I rushed around packing things up and lugging a heavy "go" bag and my hyper toddler into the ENT office this morning. Before Marissa and I sat in an exam room for 15 minutes waiting for the doc, with Marissa crying from anxiety the entire time.

I know it is all over now and no one is any worse for wear but, it was extremely inconveniencing to have to do all that only to go home without being seen. Oh, and Dr. K felt the need to let me know that I would not be charged for this "visit". I told him "thank you" but what I wanted to say was "darn straight I won't be charged! Why would you charge me for inconveniencing me??" Oh well!

My only other concern is that we won't be able to schedule the surgery soon enough to suit us. Please pray with us that Marissa can have the surgery no later than the end of this month. If it goes too much later than that, it will seal the deal and ensure that decan will not be happening this summer. Plus, as it gets later, Dr. P gets further along in her pregnancy and might not be able to do the surgery again and we would be back at square one.

We do have a pre-op appointment with Dr. P on Tuesday the 14th. I am expecting a call tomorrow morning letting me know when Dr. P is available to do the surgery. I will post an update at the beginning of this post as soon as I know a date.

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In a totally unrelated matter:

This is the hairstyle we call "puppy dog ears"

This is the "Ellie May"

I wanted to share a video with you from this weekend. Pay close attention for a special "little gem" at about 20 seconds. You might have to turn the volume up to hear it. :) Also, be listening for the best baby giggle on earth toward the end at about 2 min 37 seconds.

Yes, Marissa will probably try to kill me in my sleep when she turns 14 and learns that I posted a video of her tooting for all of cyberspace to hear and see! Oh well, I couldn't help myself!

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!