Tired

I haven't been feeling much like writing lately. Mostly because I am just tired. Not tired of writing or anything like that. Just plain physically exhausted, doggone tired. Aria spent the first four months of her life sleeping like a champ but the last few months she has started waking more and more often. There have been nights in the last few weeks where we have been up ten times or more. I don't really want to complain or look for sympathy here. I know how blessed I am to have a beautiful happy baby and I know that it is EASY to wake up and tend to a healthy one.

When Georgie was sick I lived on very little sleep. I knew that her time here was limited and so I spent every second I could with her. When I did sleep I was constantly aware of the hum of the oxygen, the beeps of the bipap and kangaroo pump etc. If she made the tiniest little peep I would jump up and make sure that she was okay. I was in a constant state of adrenaline. Sleep was an escape when it actually happened. The worst part however, was that upon waking I always realized that my life was actually the nightmare and there was no escaping it.

Mike and I will both admit that Aria is totally spoiled with love. The girls and us cannot get enough of her. She almost never cries because there is always somebody there ready to see to her needs including at night. Waking up with Aria however, has started to wear on me. I wake up exhausted and have very little energy. The cold weather doesn't help much either. I have had had thrush so many times that I have lost count - always when I am super tired. I hardly ever feel like running because if I do have the time I just want to lie down.

Back in September as we started spending less time outside Aria started fighting her naps. She seemed to always be awake. I could lay her down awake and she would play, fuss, cry in her bed for over an hour. Sometimes she would fall asleep for 5-20 minutes and then she would be up and ready to play. There was nothing I could do to get her back to sleep, including leaving her alone. Sometimes she would fall asleep in the car or while I was nursing her but that never lasted longer than 40 minutes. Eventually, this lead to more nighttime waking.

Now Aria is my fourth child and I have read many books on how to get babies to sleep. Calla didn't sleep at all for the the first 6 months of her life. Poor little thing was always crying. Remember Shannon? Eventually, I managed to start getting her to sleep and she remains a great sleeper to this day. Maya went through a phase of wakefulness but we survived that too. Aria is just different. They're all different!

The last few nights with Aria have been better and I am hoping that we are on the upswing. I can handle getting up once or twice a night but any more than that leaves me feeling less than adequate. We have just started getting back into a regular routine with Calla and Maya so hopefully I can help Aria to find one that works for everyone. She remains a happy and active baby. I can't believe how much she has grown and how much she can do. So again, I don't really want to complain or look for sympathy. I am just tired...

Love to you all,

Kristen

PS As I am writing this Aria is pulling on my netbook cord with all her might! : )

Reflection

As 2010 draws to a close I have spent quite a bit of time reflecting over the last year. I remember my New Year's Resolution from last year. It was simply to try harder when it came to our food choices. In many ways, we as a family have succeeded. We actually haven't bought a loaf of bread in almost a year. We eat most of our meals at home and we buy local and organic as much as possible. The girls have gotten used to eating homemade soups and pretty much anything else I can make in a crock pot. Sure, we still have our mac n cheese but we buy the organic now and try to eat it sparingly. Muffins and granola bars are all homemade but we still have crackers and cereal. We are definitely eating better.

2010 has been a good year for our family. In February, we spent a couple weeks in Portugal where I found peace on the beach and the girls found hours of fun in the waves. In May, we welcomed Aria into the world and our lives have forever been changed - for the better. In October,we organized and put on our second annual Georgia's Journey of Hope. Final totals put us just over $15000 thanks to a lot of amazing support. For Thanksgiving, we made our first road trip with Aria to Calgary and had a blast visiting family and friends. December offered us the chance to do tribute to our amazing palliative care team here in Winnipeg just before celebrating Christmas.

Resolutions? Well, I have one - to try to live in the moment and trust that I am on the right path. I know it's really vague but I have some more concrete ideas on how to make it happen. The first and foremost is to laugh more. I am going to start recording Ellen and other funny shows. Modern Family is my favorite but it only comes on for a half hour once a week and that's not enough. I am also going to start taking pictures of Maya every time that she comes down in a bathing suit or sun dress telling me that she is ready to go outside - keep in mind that it's often -20 degrees here! Instead of getting frustrated about it I am just going to start documenting it. It will probably give many of you a laugh too! : )

The girls of course have no resolutions for the new year. They continue to love school and their after school activities which include, swimming, gymnastics, dance and piano. Calla is really enjoying her piano lessons and I admit that I love sitting down to play with her. Some of her books have a teacher's part and Calla loves me to play along. It has been a great bonding experience. Part of my living in the moment is to continue taking the time to play the piano with Calla.

Trusting that I am on the right path is more difficult. I do know however, since the birth and death of Georgia that I am at least moving in the right direction. Georgia's Journey of Hope will again take place, hopefully bigger and better than ever. I also have a few other ideas about raising awareness.

I have been struggling since last August with what to do with GJH. Several people have asked me to register it as a charity and I am still doing my own research and soul searching. While I am totally dedicated to ending SMA and honoring Georgia, I am also totally dedicated to raising my three daughters. I consider myself a dedicated mother, wife, daughter, sister, friend etc. The demands of starting my own charity may be just a little bit too much at the moment especially when there is a Canadian SMA charity that seems to be doing a wonderful job. If anyone has suggestions as to how I may structure a charity that would complement FSMAC instead of competing with it please contact me. I'd love to hear from you.

We are looking forward to a nice family dinner out tonight and then a movie and popcorn. Maybe Aria will surprise us and start the new year by sleeping through the night!! LOL

We wish you all a happy new year surrounded by the love of family and friends!

Love to you all,

Kristen

Palliative Care

On Thursday evening here on CTV news they will be running a piece about pediatric palliative care. Most people don't like to hear the words pediatric palliative care and some get quite riled up when they hear the words. People seem to think that the minute that you accept care from the Palliative doctors you are giving up. When children are involved this makes people either super sad or super angry.

The truth of the matter for us however, is that the pediatric palliative care team here in Winnipeg stepped up when no one else would. They listened to us. When I say they listened to us I mean they listened to us. Once they had heard us they took immediate action. The hospital staff at that point seemed unsure as how to proceed. Their solution seemed to be that we could just stay in the hospital until Georgia died. Given that she was bipap dependent that meant that she stayed in the PICU. That would have meant that I would also have stayed in the PICU and our family would have remained apart. Of course, at this point we had no idea how long that would be.

Georgia was never happy in the hospital and she was no longer showing any signs of improvement. The doctors had stabilized her as much as they could. Dr. Mike and Simone showed up within a couple hours of Georgia's SMA diagnosis and had us home less than 48 hours later. Our city is a small one and we were told that children almost never leave from the PICU to go home. It's just not done. I believe that we may have been the first family to ever take a child home that was bipap dependent.

We did not bring Georgia home to die as many people think. We brought her home to live. The palliative care team worked alongside us to make sure that we had everything that we needed and most importantly our daughter was HAPPY! Bringing Georgia home allowed her to be with her sisters. She was able to sit in her swing or lay on the floor. She was constantly entertained. It allowed us to celebrate her half year birthday with family and friends. It allowed us to read bed time stories to all three girls and let Calla and Maya say goodnight to their baby sister everyday. We were able to sit down to meals together too. It allowed Mike and I to sleep in the same bed drawing strength from one another even as the machines beeped.

The two and half weeks that we had at home with Georgia (post diagnosis) are some of the best in our lives. We have so many incredible pictures and memories! It was also the hardest time in our lives. We were still reeling from the diagnosis and constantly worried about what may happen. Our friends from Palliative Care were always there. They would often show up within minutes of a phone call. They were often our only light on the darkest of days.

We know that not everybody would choose to bring home their terminally ill child. There are many contributing factors to making a decision like that but in the end it was the best decision for our family and it happened because of the incredible staff here in Winnipeg. We are honored to be a part of their story on Thursday night and hope that it may shine even a tiny ray of light into someone else's darkest of days.

Love to you all,

Kristen

PS The story will be part of the 'Small Wonders' segment on CTV Thursday at 6:00.

Edit: here is a link to the CTV video online (click Play on the palliative care story)

Christmas

We have had a very busy yet relaxing couple of days. On Friday afternoon I took the girls the to play, "If You Give a Mouse a Cookie" before heading over to my parents for Christmas Eve. There are always lots of people there and it's great to catch up with everyone.

We all slept in until almost 8:00 yesterday. My parents were actually in the driveway waiting for us to call them!! We let the girls play with their Santa gifts while we made breakfast. Then onto opening...Calla and Maya had both asked for DSi's this year. We actually bought the Leapfrog Explorer for Maya and I am so glad. It does all of the reading for her. Aria was thrilled with the little guitar her friends sent but wasn't so sure about the puppy that Santa brought. It barks and moves forward when it's patted. She also loved the stacking ball that Grandpa sent.

When the gift exchange was finished my parents left and Mike proudly proclaimed,"Our job as parents is done for the day." : ) We both had a good laugh as we looked around the disaster that was once our living room. One good thing about having a baby on the move is that it can't stay like that for long. Everything has to get picked up.

Later in the afternoon we headed back to my parents to exchange gifts with Kevin and Melissa as well. The best part was eating our traditional dinner of steak and lobster! Mmmmm....

I am hoping to check out the deals at some point today. No rush though, there is plenty of cleaning to be done around here!! Yikes!!

The tone was different this year. One of us was missing. She always seems to be just beyond reach, as if she is hiding behind the corner. But, the burden was lifted. The day was full of joy and fun. We wish that she could have been here to add to the mess, and the chaos that is our Chrismtas day but she remains forever part of the joy and love.

Love to you all,

Kristen

7 months

Today our Aria is seven months old. She, and we have all had a busy month. With concerts, and baking, shopping and more shopping the month seems to have flown by. Aria now has three teeth and just yesterday she got her ears pierced! She cried for all of 10 seconds and then stopped to look around at all of the stuff and people in the store. She is up on her hands and knees all of the time now although she has yet to perfect the act of crawling. She still prefers the inch worm, army crawl and rolling.

I have been introducing new foods to her on a regular basis but no surprise to me, she prefers the orange food. Carrots are her favorite followed by squash and then sweet potatoes. Beans received a few tentative swallows followed by gagging and spitting, while peas received the the all out puking award - won't try those again as I am actually allergic to them myself. She will however, chew on brocolli and seems to really like the taste so there is hope for the greens! : )

Calla had her last day of school today so I feel like our holidays are finally beginning. Everything seems to have come together and I am hoping to have some relaxing moments with the girls over the next couple of days. Enjoy the pictures!


The girls with their gingerbread house that they made with Grandma!



Reading stories with daddy.


Maya in the church pageant.


Calla all ready for her school concert.


Aria chewing on her drumstick!


Who says you need t.v.?! Yes, she is actually watching the washing machine and loving it!! : )


Ready to go see Santa. Check out those ears!

Love to you all,

Kristen

Grief

My friend Emma sent me the following text today as it was printed on another SMA family's blog and she thought that I could relate. It is perfect and expresses my feelings accurately so I am reposting it here:

Meet my Friend Grief

"I would like you to meet my best friend. His name is Grief. We met each other unexpectedly and became friends instantly. He follows me wherever I go. When I go to sleep at night he tucks me in and whispers in my ear, "I'll see you in the morning." When I awake surely he has held true to his promise and greets me with a frown. He frowns because he is sad he had to meet me. He is the most loyal friend in the world. You can forget him for a while and not even think about him and he is willing to return at the drop of a dime. Grief is unselfish though. When other friends are around, he takes a back seat. He is quieted by the chattering of my other friends. It's nice to have a break from Him. Sometimes he's unrelenting and can be a drag. Other times I am grateful he's my friend because when he's around I know I haven't Forgotten.

A while back he was my very best friend. Slowly other friends are taking his place and he doesn't visit as often. I have even made friends with Joy again. I thought I had lost her friendship forever. Joy is a good friend too. Hopefully one day I will be able to be as good friends with Joy as I was with Grief. Maybe one day we can all be friends and share the same heart. To live in the Joy of today, to remember the grief of yesterday and to love all of my tomorrows. When all three of us can attain the same heart, I know our new best friend will be peace."
-by Michelle Krainich

Thanks Emma and Kendra!

Love to you all,

Kristen

Christmas Busyness

I know that I haven't written in a while. It's not because I haven't wanted to, but I ended up with a really bad cold last week that lasted a good 11 days! I spent two Saturdays just trying to rest so that I could survive the week. I am finally feeling better but now poor Aria has a cold. She only seems bothered it by night however so I guess I should be happy about that.

With Christmas soon to arrive we have been very busy. Last week, we of course attended Calla's winter concert. Mike and I also attended a dinner to raise money and collect toys for the Cheer Board. I have also been trying to buy presents and wrap them as well as get out our Christmas cards and do some baking. I am trying really hard to throw myself into Christmas this year but I am finding it a little bit hard. Feeling sick for over a week hasn't helped my situation. I just ended up feeling overwhelmed and grumpy knowing that I couldn't get it all done without help.

Thank you to my mom! She has been here twice this week already and will be here again tomorrow so that I can volunteer for an hour at Calla's school. I have managed to finish all of my Christmas shopping and some baking. The cards are still sitting here but they'll get out eventually. : )

Tomorrow we are also being interviewed for CTV for a piece that they are doing about pediatric palliative care. No idea when it is being aired but will keep everyone updated.

So does it get easier? A little...we hung Georgia's decorations this year and I didn't feel bitter, just sad. While I am trying to have fun and continually remind myself about the true meaning of Christmas most of the time I feel 'flat'. It's hard for me to get excited about anything, even Christmas. I realized recently that I can go days without laughing. That's not good. I am going through the motions though and once again following my motto of 'Fake it till you make it'. My new year's resolution will probably be something like,'Laugh every day!' I may have to start recording Ellen. She always makes me laugh. : )

Love to you all,

Kristen

Numbers

As many of you who have seen my facebook status know, today, December 7th Aria is 6 months and 15 days old. Why is that significant? Well, because that is exactly how long we got to keep our Georgie. Ironically, December 7th is also the anniversary of Wendy's (Mike's mom) death. I like to think of the two of them hanging out up there in Heaven. I never really had to the chance to get to know Wendy well but I know that she loved babies and would have been all over her grand daughters.

While we try not to focus on numbers and dwell on dates sometimes it's hard not to. Tomorrow, Aria will be older than Georgia ever was and that feels almost strange. She is already bigger that Georgia ever was (18.5 lbs and 27 inches) and is a super active kid. She never stops moving. : ) It seems odd that our baby girl will now start to look older than her sister. While Aria's pictures will continue to change, Georgia's will remain forever the same.

While I feel like I have made peace with Georgia's death I still have moments where I am angry. I can become easily overwhelmed and start to get really grumpy. Then I often feel guilty because Georgia was an amazing gift that taught so many of us so much in such a short period of time. I really believe that that was her mission in life...but being only human I still get mad. My treadmill is often my best friend when I am feeling like that. I run and run until the anger starts to dissipate and positive energy starts to fill me up again.

We had a good day today. Calla was performing in her school Christmas concert. I attended the afternoon performance with Aria and my parents. Mike and Maya are there right now for the evening show. Aria is currently sleeping in her bed. I am so excited to have another day with her. I can't wait to see what 6 months and 16 days will bring.

Love to you all,

Kristen

One Step at a Time

There is big news in the SMA world today. Here is part of the bulletin from Families of Spinal Muscular Atrophy.

CSC, a leading stem cell therapeutics company, has developed a stem cell-derived motor neuron transplantation therapy, MotorGraftTM, for the treatment of SMA Type I. Pre-clinical studies completed in collaboration with the Hans Keirstead Research Group at the University of California, Irvine have shown functional benefit and safety in animal models. CSC's MotorGraftTM was granted orphan drug status for treatment of SMA by the FDA in late 2009.

Filing of this application is the first step in a multi-phase clinical development pathway aimed ultimately at approval of a novel therapy. The approval process for cutting-edge therapeutic approaches such as cell products may present unique regulatory challenges compared to conventional drugs, so companies and the FDA must work in close partnership to ensure safety and efficacy of these first in-human products. A cautious regulatory approach has been the norm in cell therapy applications submitted to date in other disease areas.

This trial will study the safety of MotorGraftTM and the surgical procedure required to deliver these cells directly into the spinal cords of patients with SMA Type I and will enroll a very limited number of patients. This IND filing is a major milestone in the search for a treatment for SMA patients.

One more big step!

Love to you all,

Kristen

New Video

The Strongs have put together a very powerful new video about SMA. Please take a few minutes to watch it and count your blessings as we enter the holiday season. Just click here

We are truly honoured that the Strongs have included a picture of Mike and Georgia.

Love to you all,

Kristen