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...

And now, present day...

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...

Playin' With Daddy

It's little moments like these...



that make it all worth it.

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!

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:

Awesome Hair

Need I say more?