My friends,
What a a year we've had. It's been a year full of tremendous ups and downs, but I am happy to report that things are going very well.
As you will maybe recall, we spent much of the first four months of the year in hospital with our little Ellie. She spent fourteen weeks in the Transitional Care Unit of the ICU at BC Children's Hospital. When she was admitted, she was so small. She slept all the time, had very little voluntary movement, had difficulty breathing, and we were honestly worried for her.
The staff at the hospital were incredible, almost like a second family. They doted on her, loved her, made us feel like we were doing the right thing by leaving her in their care. While she was there, they sorted out her bipap ventilator, which she initially started using almost 20 hours a day. Then, when they established that she was doing well, and her airway was secure, they started her on what we now call her Miracle drug, growth hormone injections.
We started late in January, and saw almost immediate results. Our little girl, who was barely 10lbs, and 21" started to grow! In April, she came home (went back for a week, and came home again) in time for her first birthday. All I wanted was for her to be home, for us to be home together as a family. I got my wish.
Ellie had a huge hospital send off, and we were thrilled to have her home. Some adjusting was necessary, Jakob had to get used to having the four of us at home again, and was rather sad to lose his special "volunteer time". At the hospital, the Child Life program had incredible volunteers who would take him most afternoons to play. He loved the attention!
The biggest adjustment, was having night nurses come to our house, almost every night. Their presence allowed us to get the proper sleep to keep up with Ellie's day time appointments of physio therapy, occupational therapy, infant development, speech therapy, along with endocrine appointments, and breathing appointments. Let us not forget Jakob's preschool classes, which he loves! Busy, we were!
In the summer, we finally found the missing key, that would help Ellie the most. She was diagnosed with hypothyroidism, which is easily treated. Prior to this, her weight had plateaued, but she was slowly progressing, learning to roll over, sit up, and near the end of summer to start scooting around on her bottom.
With the addition of the thyroid medication, we finally saw noticeable growth. At her 20 month appointment, just this past week, our little peanut weighed in at 17lbs6oz, and was 29" tall! Such drastic changes from just a year prior!
In early fall, her doctors felt that she was ready to start weaning off her bipap support at night, having had a successful overnight sleep study. It would take a few weeks of hospital "sleep overs" to make the switch to breathing on her own, but what a welcome change! I cannot begin to tell you how relieved we were to find that she had improved
so much.
In late September, our family hosted the One Small Step walk in Ladner. We initially hoped to raise $10,000, which was our personal goal. Our friends, family, and incredible community came out to support us in ways we couldn't possibly have imagined. When all was said and done, we raised almost $22,000, more than DOUBLE our goal. We were incredibly humbled to know so many generous people. Even greater than our own accomplishments with the walk, were the results of the international campaign. For 2012, the goal was to raise $1 million. The goal was surpassed, reaching
$1,071,703.12! AMAZING. We are filled with so much hope, that one day our sweet girl will be able to live a life where she isn't hungry.
Ellie has caught up to where she should be cognitively, which is truly incredible. We have less and less appointments, and fewer therapy sessions. She doesn't miss a thing, and she's simply a joy to be around. In January she will be fitted with hearing aids (we missed a December fitting due to the flu!). She is almost walking, not something we're trying to encourage too much, she is already fast enough at scooting! She loves to cruise around the furniture, and get into mischief. We positioned our Christmas tree this year on top of a side table, to keep her away from the ornaments! Her biggest love in life is her brother, Jakob. He can do no wrong in her eyes, and she would gladly shadow him every moment of the day!
Jakob is half way through his second year of preschool, and just celebrated his fourth birthday. He played the role of shepherd in the church Sunday school pageant, and in his preschool's Christmas performance. It was lovely to see him on stage! The big debate is where to send him to kindergarten next year. I can't believe we're already discussing it, it seems like yesterday he was my baby! I am constantly amazed at how well adjusted he is, considering the months we spent trekking back and forth to the hospital. If anything, it's made him more outgoing, and willing to talk to new people. He loves to have us all together, loves play dates with his friends, and talking about his Transformers.
Jason is still loving his job, and busy. We started an involuntary renovation on our master bathroom, following a leak into our laundry room, and along with the help from his grandfather, has almost completed the project. What a big job!! I'm very much looking forward to the final reveal.
I started work in May at the BC Government, progressively working more hours, and I couldn't be happier with my work/life balance. I am incredibly fortunate to have flexible work hours, so that we don't need to send the kids to daycare. We're lucky to have grandmother child care on the days where our schedules conflict, and also for the odd parents' night out!
The next week is going to be filled with lots of festivities, with family, with friends, with food and love. There's something so special about this time of year, when we gather inside, around the warmth of the fire, under the twinkling lights of the tree, to spend time with the ones we love, and to reflect on how grateful we are to be here, to be healthy, to have our beautiful children.
We are so blessed.
And so, with warm hugs, I wish you the best of the holidays, and a happy New Year to come.
Susanne (and Jason, Jakob and Ellie, too)
