Home!

On Friday April 3rd of last year, we brought Georgia home. Our Palliative Care Team was nothing short of amazing. We were out of the hospital in record time. Many of the nurses, doctors and respiratory therapists had stopped by to say good-bye and as we left many of them stood there watching in shock at the speed of our departure.

Georgie was so happy to be home, as we all were. As many of you know we would hear her laugh the very next day. She had never laughed once in the hospital. Our time at home was precious and full of memories even though it would last less than three weeks. Because Georgia was no longer hooked up to machines and we were able to take her off bi-pap for a couple hours at a time, we had a lot more freedom. This freedom meant snuggling and having picnics on the bed, dancing in the living room with her sisters, relaxing in the swing, and playing in her room. We cherished every minute that we had with our angel with us.

"Home is where the heart is,

Home is where we learn to love." Fred Penner

Wishing you all a great Easter weekend!

Love to you all,

Kristen

No April Fool's

On Wednesday April 1st, the results were finally in. The neurologist's diagnosis was proven correct - Spinal Muscual Atrophy Type 1. What I remember most about the few minutes after being given the news was the look on Georgia's face. As Mike and I tried to compose ourselves while a team of medical experts was getting ready to meet with us, Georgia watched us with a look of utter peace. Mike and I both noticed and asked each other if it were possible to have a six month old baby try to comfort her parents simply with a look. I'm pretty sure that most parents of a child with SMA would say that it happens all of the time.

Approximately, half an hour later the 'team' had been gathered to answer our questions. We had very few. Mike and I were now on a mission to get our baby girl home and were ready for battle. The meeting was tense for a while as we were obviously grieving and there were some issues about how the news had been delivered, but getting Georgia home was our priority and it took the team very little time to realize that we weren't backing down.

I just want everybody to understand that we didn't bring Georgie home to give up on her. On the contrary we wanted to offer her as full a life as we could and we believed that her being at home with her family was the place to do that. The only medical options that we were offered was the idea of intubating her when things got worse and possibly traching her. Georgie's condition was advancing so quickly that we just wanted her to feel loved and enjoy her last days on earth.

Miraculously, with the help of some amazing people we would all be home within 48 hours.

Love to you all,

Kristen

Springtime

The girls are now officially on spring break and the weather is supposed to start warming up today. I am looking forward to having a relaxing yet full week with my girls. This year like every other year, the arrival of spring has brought out Calla's asthma in full force. We were actually contemplating taking her into the the ER last Sunday night (she has my lovely chest cold) but we managed to make it through and her breathing is now much better. She has actually been on her meds daily for a couple of weeks now which is hard for everybody to handle. The Flovent turns our sweet, cautious little girl into one that is full of hyper and aggressive energy. She also has a hard time focusing and making decisions. Mike and I try to be patient with her but it can be very difficult at times. We are now trying to diminish the amount of meds she is on until we can find the right balance. At least with the weather warming up we can send her outside more to burn off some of that excess energy.

Maya, on the other hand, seems to be flourishing this spring. Instead of melt down after melt down I am hearing more laughter from her and she is much easier to reason with. Her spunky personality is starting to shine through again and she makes us laugh pretty much everyday. She currently has a list of all of the things she is going to start doing when she turns four. These include eating tomatoes and mushrooms as well as writing her name. (She can actually write her own name but doesn't think that she should have to until she turns four!) She is going to give her teachers a run for their money one day.

With a growing tummy following us all around, the excitement of another family member is growing. Maya was shouting with delight last night as she counted on her fingers 3 sisters! Both of the girls are thrilled to be welcoming another little sister. Talk of Georgia has only increased as we slowly get ready for our next one. I am very aware that most, if not all of the actual memories Calla and especially Maya have will be replaced with memories of this new little one but we are trying hard to keep Georgie's short life a part of them. This is done mostly through talking and looking at pictures. Maya also carries and sleeps with Georgia's bunny most of the time.

While I thought that March and April would be extremely difficult months we are all doing just fine so far. It's hard to be sad when the sun is shining, the birds are chirping and our kids are happy and healthy for the most part. We are planning on taking off for a couple of days around the 21st but other than that we are just taking it one day at a time.

Love to you all,

Kristen