"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, October 30, 2008

Halloween...Then and Now

I know it is not Halloween yet, but since it is only a few hours away I thought I would give you all a peek into what Marissa will hopefully look like tomorrow.


But first, one year ago...

video

And now, present day...

video

Monday, October 27, 2008

Baby on a Box

There aren't too many things in this life that I find sweeter than squatty short little baby legs and tiny baby booty in baggy jeans.  Don't you agree?

Yes, those are pictures of her on the computer that she is looking so intently at.  We have probably the most self-centered toddler on the planet.  She will stand at our computer and watch pictures of herself all day if we let her.  I think if we took her over to someones house and she saw a computer, she would be very put out that it is not showing pictures of her.   

Probably should do something to correct this behavior soon.    :)

One evening last week I had a particularly precocious toddler on my hands and needed a way to keep my eye on her while I cooked dinner.  This is what I came up with to keep Marissa in one place without having to restrain her.  We think it is pretty funny and, yes, we know she will figure it out very shortly and we will be out of luck.  But for now...

video

Tuesday, October 21, 2008

Playin' With Daddy

It's little moments like these...

video

that make it all worth it.

Thursday, October 16, 2008

Braggin' on My Girl


We just got back from a visit with Marissa's Ear, Nose, & Throat Doctor (ENT). She (Dr. P) just wanted to follow up on Marissa's ear tubes and see how she was doing otherwise. Dr. P happens to be one of our favorites. She is always so compassionate and so tuned in to Marissa's needs. She always wants to know how she is doing on the larger scale, not just in the way that concerns her area of expertise.


As usual, Marissa was congenial with Dr. P and her MA (smiling, waving and jabbering) until Dr. P pulled out her instrument to look in Marissa's ear. Marissa threw a fit even though Dr. P was very gentle and quick. As soon as Dr. P was done Marissa went back to her funny flirtatious self. She started jabbering and dancing and just having a ball. I think she was performing for them! Dr. P ended the visit by telling me how impressed she is with Marissa's development and how smart she is. As we left the exam room, Dr. P stayed behind to finish her notes and we went down the hall to check out. A moment later Dr. P came out and was talking to her MA. I'm pretty sure she didn't know I could hear but I heard her say " I am always so impressed with Marissa every time I see her. For a little girl with such a complex medical history, she is so smart and so interactive with the world and people around her."


When Marissa was born she was diagnosed with a condition called agenesis of the corpus callosum. This means that the piece that connects the right and left sides of her brain and allows them to communicate with each another is missing some parts. We were told she might have some degree of cognitive disability or this might not affect her cognition very much at all. The medical community really has no answers as to how much the corpus callosum affects a person's everyday life. We have always known there was a possibility for Marissa to have problems in this area but have been encouraged to watch how well she seems to be developing. Friends and family also tell us how smart they think she is. She knows 22 signs and is attempting to speak more and more each day. She seems to us as parents to be a smart little girl, but it is always nice when a medical professional makes comments to back up what we see.


The comments that Dr. P made might seem like small potatoes but in our world it is a huge encouragement to hear those things from a doctor. And Dr. P is not the only doctor who has made comments like that. We still don't know what the future will hold for Marissa, especially when she starts school, but for now we are happy to know she impresses doctors with her brains!

Sunday, October 12, 2008

Prayer Request

Update:


As of noon Oct. 14, Emerson is doing better. She is still not out of the woods by any means, but is now stable enough for dialysis. She is a fighter and the power of prayer is very evident in this little girl's life. Here is a link to her website.

http://www.cotaforemersonw.com/node/35

You can go here and get updates about her as well as see pictures and even sign her guestbook with a message of support. Thank you all for your prayers!

I have been following the story of a beautiful little two year old girl named Emerson who lives just miles from us. Sweet Eme has been fighting for her life lately and has almost lost the battle a couple of times. She had a multiple organ transplant over the summer and it looked like she had finally turned the corner. She even took her first steps a week ago. Today I am heartbroken to read that she has taken a sharp turn for the worse. She coded today (her heart stopped beating). They were able to bring her back but she is very unstable. Her heart, liver and kidneys have been damaged by this episode. There is a high likelihood that she will code again and they will not be able to bring her back.

Please pray with us that Emerson will make it through this and God will bring strength and peace to her family.

Thanks.

Moving Day!!

Marissa finally moved into her own room!!

We have had her in our room since we brought her home May 31, 2007. When we first brought her home we were nervous about her trach and how she would sleep. We wanted to be able to see her and have her within arm's reach. Now that we are used to the trach and we know that she is fine when she sleeps, it is way past time for her to be in her own room. The girl needs her independence!

We got a video monitor that we mounted above her crib so we can see her and make sure she doesn't get tangled up in her tubes and wires throughout the night. She has been sleeping better the last couple of nights since we moved her nap time and going to bed time earlier (quick, everyone out there knock on wood!) Surprisingly she also slept very well last night, the first time in her new room.

Jeremy and I are also happy that we have our room back. We have so much more space!

Here is a video from this morning. You decide whether she likes the idea of having her own room:

video

Saturday, October 11, 2008

Awesome Hair




Need I say more?

Thursday, October 9, 2008

Reality Bites

I am having a bit of a rough morning. I just scheduled Marissa's kidney surgery for January 22, 2009. The reality of it hit me like a ton of bricks once I got off the phone. I just sat at the table looking at my calendar and cried my eyes out. Mind you, I have not been sleeping well because Marissa has not been sleeping well, and I have PMS, so I am sure these things only enhanced my reaction. I know, TMI right? Hey, I'm just being honest!

Don't get me wrong, we knew that Marissa would likely have at least a couple more surgical procedures due to her complex multiple birth defects, but knowing that does not make this upcoming surgery any easier. I also know of other kids who have had so many more surgeries in their short lives than Marissa will ever have, and I know how lucky we are to have her the way she is.

It's just that something hit me really hard when I scheduled her surgery this morning. My mind went back to when she was in the NICU and the doctors and nurses had tried everything in their power to keep her off the ventilator and nothing was working. When they told us she would need a trach and a g-tube, we were obviously devastated but we started immediately working to make it happen. I called my mom and cried over the phone about what was to come and the dreams that we had for her that would not be coming true.

But it wasn't until I got the call from her ENT about when he was going to do the surgery that it really hit me. It was a Monday. I was actually at work and took the phone call in the break room. I stayed composed on the phone as he told me that he could do it that Wednesday. When I hung up the phone I realized the decision was made and it was so final. Nothing in my mommy power could be done to heal her. The only way for her to get better and come home to us was to do this. I could not stop the tears. Luckily my co-workers were very understanding and let me take as long as I needed.

Sitting here this morning with the reality of another surgery hitting me in the face brought back that same fear, pain, helplessness and sadness. I know she needs this surgery and it will make her better, but as any parent can relate, I don't want her to go through ANY pain EVER, even if it makes her better.

Having said all that, I'm not sure I will be able to find peace about this until she is healed from the surgery, but I do know that we are doing the right thing for her.

Thank you all for listening.

Ahhh, the taste of 100% Colombian coffee is so good on a cool autumn morning. :)

Tuesday, October 7, 2008

Our Little Rocker

Future concert-goer? You decide...


video

My apologies for the shaky camera. It's hard not to dance with her when you see her move.

C'mon, admit it, you were bustin' a move too!!

Hope you are having a good week!

Thursday, October 2, 2008

Kidney Day Part II

The bad news : Marissa will need surgery to correct her kidney reflux.

The good news : It is not urgent.

The question : When will she have it done?

We found out quite a lot today, some stuff we already knew but had forgotten. She actually has reflux into both kidneys, but we knew that already and forgot. We feel silly that we forgot and thought she only had reflux into her right kidney. Oops! Maybe mommy and daddy denial?

Anyway, kidney reflux is graded 1 - 5 (1 being best, 5 being worst). In March both kidneys were grade 4. Today her left kidney is still 4 and her right kidney is 3.5, so no real improvement. The chance that a grade 4 will resolve itself in five years is about 10%. Not good odds. She is on prophylactic antibiotics to prevent infection and damage, but this presents its own problem. It is widely known that the overuse of antibiotics can cause viruses and bacteria to build up resistance to drugs. So obviously we should get this procedure done sooner rather than later.

The surgery would take between 2 1/2 and 3 hours, so it is pretty intense and invasive. She would be in the hospital for 2-3 days after the procedure. The good news is that it has a 99% success rate in clearing up the reflux. So, at this point, we are going to talk to her pediatrician and then we will be scheduling the surgery. The urologist is actually from Denver and holds a clinic once a month here in the Springs. He said with enough notice he would be able to do it down here. He said he is already scheduling surgery down here into the new year, so it will be a few months before we do this.

Not what we were hoping and praying for, but we all know that God answers our prayers in His own way, in His own time.


After thought: The more I let this sink in, the more it saddens me that our little girl has to have another major surgery. I am sad that she is now old enough to fully understand the pain that will come in recovery. I am sad that she will have one more scar on her beautiful little body. I am sad that recovery from the surgery will set her back in things like therapy and development. I get upset when she gets sick and it takes a couple of weeks to get her back to her pre-sickie level with her therapies. Please pray that we will find peace in light of these latest developments. Thanks.

O.K. , this is too heavy. Time for some fun! Here are a few videos we shot recently of our sweet Rissa Roo. Enjoy!!




video

video

video

video