Celebrate and Serve

This morning has been an amazing time. We took Georgia off of the mask and gave her a bath, played with her and just held her while looking at that beautiful face. We took lots of pictures too.
We also told our girls about Georgia's condition. We have told them that Georgia has a sickness that we can't make better and that she is going to die and go to heaven. In order to help them/us better deal with this concept we have told them that Georgia is actually an angel visiting us for a short time. When she is ready and we don't know when, she will leave us and go to heaven. When this happens we will have a huge going away party for Georgia. It's okay to feel sad about this because we love her so much and want to keep her here with us but we only get to be with her for a short time and she will be very happy in heaven. There were many questions, the cutest being, "Where are her wings?" to which I answered you can only see the wings in heaven.
I tell all of you this not to make you sad but to better help you support my children. While we all have different ideas about death and I am sure that there are many religious arguments about who gets to be angels we ask that for those of you that have regular contact with Calla and Maya that you don't contradict us. We are doing our best to keep our family calm during a most stressful time and confusing a 5 and 2 year old will only make things worse.

Georgia was born on Monday October 6th. On Monday (April 6th) she will be 6 months old. You may call me whatever you like but as her mother I know that I will never see her blow out that candle on her first birthday. My daughter will never live to play on the beach or see the leaves change color in the fall. We invite you to join us on Monday anytime between the hours of 2:00 and 8:00 PM to celebrate her half birthday. If you are uncomfortable with this idea please do not feel obligated, we all deal in different ways. If you are reading this email and I don't care how many times it has been forwarded you are invited. It's not very often that we get to celebrate the life of an angel living among us. I know that so many of you are struggling and want to do/give things so instead of gifts I have a list of ways that you can help us celebrate.

1. Consider donating to The Children's Hospital, The SMA association or The Now I Lay Me Down To Sleep organization.

2. Consider donating toys to your local Children's Hospital

3. If you live in Winnipeg go help the volunteers sandbag and feel the exhileration of helping others.

4. If you have a special skill consider volunteering your time and that skill for a family in need.

My daughter is here for a reason and one of those reasons is to remind us all that we need each other. The world needs more humanity and we can all become better people by learning to serve. If you truly want to help our family and honour Georgia then become a better person and help somebody. I have never needed more help in my life and am so fourtunate to have more than is needed but there are many people out there who are struggling and have no one.

We are right by Island Lakes School, email or call for address & directions. The house will be a disaster and I'm not sure what we will be eating and drinking but we will celebrate.

Love to you all,

Kristen

Past email (4/3/09) - Home

Hello to Everyone,

Thank you all so very much for your messages. They do make us feel better. After the diagnosis on Wednesday (which was quite a commotion that I will talk about another day) we met with the Palliative Care team who are the most amazing people that I have ever met. They have answered all of our questions, listened to all of our concerns and relieved us of many of our fears. The fact that we got out of the hospital as quickly as we did is a testament to their dedication. Most of the nurses were stunned how quickly they were able to arrange for us to come home.

The last couple of days have been filled with a parade of people coming to teach us how to take care of Georgia at home and many compassionate nurses, doctors etc coming to say good bye. We even received several phone numbers of nurses willing to provide respite.

I feel it necessary to fill you in with our plan if only to avoid the thousands of questions I may receive over the next while. We have chosen as Georgia's parents to bring her home and to keep her
comfortable and make her feel safe for as long as she is here. We have a team of palliative care nurses and physicians who will come by at least once a day and as often as needed. They are committed to helping us through this. We have been taught how to administer drugs, and feed
Georgia as well as all kinds of other little things now required to care for her. The last email that I wrote entitled Anger is basically inaccurate as to the way that she will leave this place. Choking is
very unlikely according to our palliative care doctor. Eventually the respiratory distress will become greater and greater and we will increase her drugs to keep her comfortable. Essentially what it does is get rid of that panicked feeling and keep her calm. At the end she will most likely be asleep and we will be the ones here to hold her.

Laura, if you want to arrange those meals with the parents from school now I am willing to accept the help. Please remember no nuts or eggs. Darrin if you are willing to come to the house we would appreciate it. Peggy, I am hoping to get Maya into one of the classes starting next week.

We are hoping to keep the next couple of days somewhat quiet in the hopes of seeing how Georgia will fare now that she is at home. Once we are a little more settled visitors will be welcome. At the moment she is settled up in her crib. The crib is now in our room at the foot of
our bed. The ride home from the hospital was great. I think that Georgia knew that she was on her way home because I know that I haven't seen her that calm since before we ended up in hospital. Even the nurse couldn't believe how well she was doing when we arrived.

We will keep you posted with emails and pictures. We have a photographer coming on Monday or Tuesday to capture some of our precious time with Georgia.

Thank you for your continued prayers, love and support,

Kristen

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 (3/31/09) - Anger

Please don't read the following email unless you truly are committed to listening to the crazy thoughts of a desperate mother.

As I drove home tonight I was wondering what I should write about tonight. Should I tell you that over the last couple of days the first feelings of anger started to hit me? Should I tell you that when people tell me that it's okay to be angry it only makes me more mad? That when they look at me with pity I want to lash out at them? Should I tell you about yesterday as we were still awaiting results I watched the specialist hand a paper to the resident? The resident read the paper looked over to Georgia's room and proceeded to type at the computer for another half an hour as my heart was ready to beat out of my chest.

Shortly after that he showed the paper to another doctor who then disappeared for a few more minutes before finally telling me that they had nothing. Do I tell you how for that half an hour I wanted to stand up and scream, "Do you not see us? Do you really not understand that our whole lives are hanging in the balance?" Do I tell you about all of the people that tell me that once we know for sure that it's SMA I'll feel better? Really? Do they truly believe that diagnosing my child with a fatal illness that has absolutely no treatment will make me feel better? That my child will probably suffocate on her own mucous and I will have nothing to offer her but my arms and voice? The only
decisions that I will have to make are those of quality versus quantity. Or how about that I am mad at myself because I can't truly let myself enjoy my time with Calla and Maya because all I can think
about is their sister?

After saying all of this I do know that all of this anger serves not. When I came home and read all of the emails waiting for me I was reminded that all that will truly get me through this is faith. Thank
you for reminding me. You see you truly are my therapists and saving grace.

Today Mike and I finally managed to convince the doctor to turn down the assistance on Georgia's mask and low and behold her agitation seemed to ease and her oxygen levels actually went up. As I left her tonight she was rocking with daddy and talking to us. I am going to go to bed now and pray that Georgia has good night sleep and that we get some kind of good news tomorrow.

I know that I don't need to ask but I will. Please continue to pray for Georgia, that her strength and health will return. Please pray that we will get good news tomorrow. And, if you have any prayers left please pray that I will be able to let go of this crazy anger and accept whatever fate has to offer. It is the only way that I can truly be strong for her.

Love to you all,
Kristen

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 (3/25/09) - A Good Day

Wow! First of all, allow me to thank you for all of your messages and words of encouragement. Never in my life have I received more emails! Thank you for forwarding my messages on to others. As I have said before you are now my therapists.

Today was a good day. It began with me arriving very early because Mike had stayed most of the night. The ICU is packed at the moment and the nurses run off their feet. We didn't feel comfortable leaving Georgie alone when we know that she often wakes up and becomes agitated. That was the worst part however.

The music therapist came mid- morning with a tiny shaker for Georgia and sang her songs. When Georgia became tired Cecilia just sang her right to sleep. It was so nice to watch. She is coming back tomorrow to
spend more time with her. For those of you that don't know Georgia love music especially singing. I know, I know all kids do. But Georgia truly loves singing. It wasn't that long ago that she was trying to sing along to many of the songs that I sang to her. I don't know a lot of 4-5 month olds that do that. Her favorites are The Wheels of the Bus and Johnny Works With One Hammer. When she is tired she love Twinkle, Twinkle and Land of the Silver Birch.

Shortly thereafter we decided to make another attempt at removing Georgia's breathing mask. We tried yesterday and it was fantastic but heartbreakingly it only lasted 25 minutes. Today, for two and a half glorious hours I held my baby girl and got to look at her whole beautiful face. We sang songs to her for almost an hour and then she drifted in and out of sleep. The doctors and nurses all tried to keep their distance but their smiles were genuine.

Georgia is starting to gain a few warriors at the hospital. Todd for example (a respiratory tech) who during rounds when one of the residents referred to long term breathing assistance reminded the whole team that it doesn't have to necessarily be so. He is also the one leading the charge to get Georgia off the mask. Or Lynda, who is currently working in the NICU but has stopped by the last couple of mornings just to check on Georgia. Or Colleen, who stayed late after a shift hunting down a mobile to help soothe Georgia. Or Alice, who drew a smiley baby face on Georgia's bag or formula in her attempt to keep the room positive. The list goes on and on. Georgia is touching so many lives. We feel so grateful.

On another note, for those of you who old baby stuff lying around and are holding on to it for a possible garage sale consider donating it to your local children's hospital. In the PICU there are only 3 mobiles but 10 beds. Most of the beds are filled with babies. You can also donate any hard plastic toys, pretty much anything that can be washed.

Mike and I are truly blessed to have so much support. We thank all of your ongoing prayers and encouragement. The blood tests will be back on Friday at the earliest. We ask that you continue to pray for Georgia to grow strong and healthy as well as receiving a good prognosis. We feel your energy all of the time. Everytime that I hold Georgia I start talking to her about all of you. Reminding her that so many people are now praying for her and some of them are even planning to come to her birthday party. Her actual birthday is October 6th so her party will probably have to fall on the Thanksgiving long weekend. What an amazing time to be grateful!

Today was a good day. There were no tears driving home from the hospital. The only thing blinding my vision was all of the crazy snow. I am focusing on having an even better day tomorrow. Georgia is leading the way now, and we are all clearing her path.

Love to you all,
Kristen

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 (3/23/09) - Georgia

Hello all,

I hope that you don't mind but I plan on continuing my emails. My reasons are purely selfish. You see, writing has become my therapy and you have all become my therapists! : ) Also, as ridiculous as it may sound I feel like if I keep reminding you about our Georgia you'll keep thinking and praying for her.

Today has been a long day but not necessarily a bad one. We were forced to wait until 1:15 for the blood draw. They almost didn't do it because it was supposed to be gone by 1:30. Nothing like leaving it until the last minute! It will be mailed to Ottawa and we won't hear anything until Friday at the earliest, possibly 2 weeks. The blood draw went relatively well, only two pokes. Georgia's heart rate sky rocketed however and ever since then anytime anybody goes near her hear heart rate soars. I find this very nerve wracking and often want to kick everyone out of the room even when I know they are trying to help her.

The respiratory techs have lowered the amount of assistance that she is getting and so far so good. The neurologist also came back in today to let us know that the initial blood tests came back normal. While I find this comforting what made me even happier was the confused look on his face. It kind of said, "Maybe I'm wrong"

Mike has a degree is physics. I find this humurous because physics was my most hated subject and something that I never really understood. He has told me however that there is a universal law that states if a possibility exists and attention and energy are focused on that possibility it will become true. This is something that I can understand and believe. So once again I ask all of you to pray for Georgia, that she will become strong and healthy. For those of you who aren't so keen on prayer I ask you to send your energy or positive thoughts her way.

When I'm feeling sad and desperate I try to imagine the birthday party we will throw for her in October. You will all be invited of course! This is my way of remaining positive so maybe every once in a while you can imagine our little girl blowing out birthday candles.

Forgive my rambling, as I said you are now my therapists.

Love to you all,
Kristen

PS When you do find the words we love to hear your messages. They are
our lifelines.

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

Welcome to Georgia's Journey

This is the first entry of what we hope will be an on-going record of the journey that lies ahead for Georgia and her family. We have set up this blog site for Kristen and Mike, to record day to day events in Georgia's life, share pictures and special moments as well as provide a central point for all of us to gather our thoughts and prayers.

Georgia was born at home on October 6th, 2008 4:15am, in Winnipeg, Manitoba. Recently, Georgia was admitted to the PICU at the Health Sciences Centre (Winnipeg) with breathing problems. After 2 long weeks of waiting for test results, Georgia was diagnosed with SMA (Spinal Muscular Atrophy) on Wednesday, April 1, 2009.

Today, April 3, 2009, Georgia has been moved home, to be near her sisters and the rest of her family and friends.

[Please read the next few posts denoted "Past email ..." to provide you with some history and pictures of Georgia while in hospital. The content for these posts are taken from emails sent out by Mike and Kristen over the past several weeks. When they have time, Mike and Kristen will post to the blog to provide updates above the "past email..." entries. ]

We encourage you all to visit here frequently and share this with other family and friends - near and far. Please leave your words of encouragement, prayers, and thoughts as "comments" throughout this blog.

Friends,
Glen & Jenn Douglas