Thursday, October 30, 2008
Posted by Alicia at 7:16:00 PM
Monday, October 27, 2008
Posted by Alicia at 12:54:00 PM
Tuesday, October 21, 2008
Posted by Alicia at 8:19:00 AM
Thursday, October 16, 2008
Posted by Alicia at 11:05:00 AM
Sunday, October 12, 2008
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.
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.
Posted by Alicia at 8:51:00 PM
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:
Posted by Alicia at 9:21:00 AM
Saturday, October 11, 2008
Thursday, October 9, 2008
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. :)
Posted by Alicia at 9:31:00 AM
Tuesday, October 7, 2008
Future concert-goer? You decide...
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!
Posted by Alicia at 7:48:00 AM
Thursday, October 2, 2008
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!!
Posted by Alicia at 4:40:00 PM