Past email (4/2/09) - Taking Georgia Home

This is Mike. Sorry we haven't been able to write since we got the diagnosis yesterday. I'll just give a brief update and let Kristen do a more in-depth one when gets home.

From everything we're being told we'll be able to bring Georgia home tomorrow afternoon! We've spoken at length with Palliative Care and Home Care staff, and we're going to try to make Georgia's last weeks (their best estimate was she had "weeks" remaining) as comfortable and happy as humanly possible -- for her and for our family.

It isn't what we hoped for but after almost 3 weeks at the hospital it will be so nice to bring her home. There's a lot of equipment involved, but everyone is very nice in showing us how to use it and it all seems manageable. And there are palliative care nurses/doctors on call for us if we need any help.

Take care,
Mike

P.S. As Kristen spent last night at the hospital I printed off the latest emails and brought them this morning for her to read. She often reads through tears but it is obvious that all the kind words bring her peace. They certainly do for me. So thank you, from the bottom of our hearts.

Past emails (4/1/09) - Diagnosis

[From Krista on behalf of Mike and Kristen]

Hello,

I spoke with Kristen at 3:30 today and she asked me to send you all an e-mail as she knows many of you have been waiting to hear. They were given the confirmed diagnosis of SMA today for Georgia. I do not know what else to tell you at this time except all we have in our hearts, our love, thoughts and continued prayers should be sent towards them. Kristen and I only spoke for a few minutes and she needed to speak with a doctor. The family will be leaving shortly to go and visit but should I hear anything else I will write again.

I love that baby and that family with all that I have as you all do. Please continue to provide Kristen and Mike as well as the 3 girls with all your continued strength.

I or another will update you when we can.

Krista

Past email (3/30/09) - Still waiting

Hi everyone,

This is Mike. Kristen wanted me to send a quick update today to let people know that we didn't get the test results today (for the SMA test). We both waited anxiously all day only to be told around 4pm that we would get the results on Wednesday (not even tomorrow!). Definitely frustrating, but not much we can do about it.

Also I should let you know that things haven't gone quite as well since Kristen's last update. On Sunday afternoon Georgia was off the breathing support and doing well, coughing a fair bit but that's what she needs to do to clear her lungs. But then she coughed and suddenly started choking, and I realised she couldn't breathe at all. I yelled for help and several doctors and nurses came running. After some scary moments (seconds? minutes?) watching her oxygen level and heart rate plummet they were able to clear the blockage and get her breathing again. I guess it shows while we're still in ICU. (They were even prepping the 'crash cart' but luckly didn't need to use it.)

Anyway, after that episode Georgia has seemed a little more tired, and the doctors today were being more conservative and didn't want to take her off the breathing support, at least for today. A bit heartbreaking as she had been doing so well prior to this.

Nevertheless we are doing our best trying to remain hopeful! All the support we've received and continue to receive from everyone is honestly what's keeping us going. It truly is amazing.

Keep up the wishing, thinking, singing, and praying!
Thank you
Mike

Past email (3/29/09) - Video

Hello to all,

Before I begin let me just state that for those of you that watch the video, I have yet to see, I cannot sing a note. My beautiful daughter however couldn't care less so as you watch the video forget the voice and focus on Georgia. Focus onow she continues to fight and surprise doctors and how she loves her mommy and daddy despite their dreadful singing voices. : )

Yesterday was another good day. Georgia successfully came off of the assistance 3 times for 3 hours each. During the last trial Gillian helped remove all of Georgia's wires so that she could have a quick bath. This was a very precious moment for Mommy. At the end of the last trial however, Georgia was very tired and her oxygen levels started to drop. I was angry at myself for not having pushed to put the mask back on sooner. I knew that she was tired, it was almost 10:00 for crying out loud, and I didn't speak up. Georgia stabilized quickly after having the mask back on but I was left on edge. My mind can go crazy sometimes as I sit there and watch her (Eckhart Tolle would not be impressed).

This morning I made it clear that trying to put a baby on a 13 hour day schedule makes absolutely no sense as most babies her age are in bed at night for 12. I told them 10:00 is a very late bedtime for a baby even one in hospital. The doctors and nurses agreed with me explaining that sometimes it's easy to forget about those regular routines. Today Georgia didn't wake until 9:30 and we are all trying to readjust her schedule to allow for more time without assistance.

Of course, tomorrow we expect the results of the blood work they did last week. To say that I am not terrified would be a blatant lie. Mike and I remain hopeful however. I came across a saying in my magazine yesterday that said you have to approach life with love and not fear and so that is where I try to refocus my energy. Of course I want to hear great news tomorrow. Georgia is one of the 3 most precious people I have in my life. No matter the results however, being afraid for her or for us will not help. Mike and I are dedicated to loving her and
willing her to get better.

We are forever grateful to all of you for your ongoing support. Tomorrow morning as you wake up I ask that you pray that we will get good news from the doctors. We ask for your prayers for Geogia's improving strength and for those of you just focusing I ask that you continue to picture our Georgia at her big birthday bash trying to blow out her candle as her sisters stand at her side arguing about who should blow it out first.

I promise that when we know the results I will have someone send out an email to let all of you know. I feel a little bit like we're all in this together.

Love to you all,
Kristen

*Videos*
Singing to Georgia while Mike rocks her (off the breathing mask):
http://www.youtube.com/watch?v=4jZ7oz-lwOc

Georgia laughs at Calla's pony antics (this is 2 weeks before she was
admitted to hospital): http://www.youtube.com/watch?v=cfqjgSTUHuw

Auntie and Uncle visiting
Georgia
Sisters Maya & Calla
Mommy & Georgia
Lamb Attack!

Past email (3/26/09) - Pics

Some more pictures...

In the one where I'm holding her, I was going to make the excuse of
having slept at the hospital several nights in a row, but I think my
hair is always that messy... :)
- Mike

Past Email (3/24/09) - Pics

Here are a couple pictures. Thank you so much for your support, kind words and prayers. We can really feel the difference it makes.

(I also included a picture of her from before all this, since it's hard to remember what she looks like without the breathing mask on!!)

- Mike

Past email (3/19/09) - Georgia

Hi everyone,

Some of you may already know and many of you will not have heard but our little Georgie was admitted into ICU on Monday night. She has bronchiolitis as well as a secondary bacterial pneumonia. On top of all of that, last week we had just begun having tests done because Georgia suffers from mild hypotonia. In other words she is quite floppy and her neck and back are very weak. While the two conditions are not related the hypotonia just makes it that much harder for Georgia to cough up all of that junk in her lungs. She is on a machine called V-PAP that helps her to breathe and there are tubes everywhere. While this has been very difficult Mike and I are able to see the angels along the way, mostly the amazing staff taking care of her as well as all of the people offering to help. Georgia is currently holding her own and while we are looking at a long road ahead we are hoping that the worst is behind us.
All that we ask is that if you believe in the power of prayer you will pray for our 'Georgia Baby'. We will take all of the help that we can get. If you wish to hear updates you can call my mom and dad. Their names are Jack and Betty. Otherwise, I won't be home for a couple of days to jump on the email.

Thanking you in advance for all of your love and support,

Kristen