A New Year.. New Hope

At long last I am sitting down to update this blog and to update all of our friends and family about our Bella Kai's journey. I haven't posted since November and I have missed it for sure. This may be a long one, so pour a cup of coffee or tea, and if you have the time, read on about the many happenings over the last few months.

When I last posted we had just received the results of Bella's "swallow test" and thankfully it showed that her swallow function was perfect, no issues, no need for alternative feeding methods and Miss Bella could go on devouring all of her favorite foods. Which she has done, with a vengeance. She last weighed in this month at a whopping 31 lbs! Her doctors are very pleased with her weight gain and the muscle mass she has developed. The two vitamin supplements she takes 2x a day have no doubt helped her grow stronger.. especially in her legs.

Bella has continued a very, very busy therapy schedule. She has physical therapy 2x a week, horse therapy, occupational therapy and speech therapy once a week. She continues to work very hard at each of these. It is sometimes hard for people to realize how much work it is for Bella and Rett girls to work at the things other children, including her brother, Zackary take for granted and find so simple to accomplish.

Her PT sessions have concentrated on getting Bella up on her feet, to gain her balance and confidence and working so hard for her to take those first crucial steps. Bella was casted for braces for her ankles and feet. The braces are designed to strengthen and straighten her tendons in her feet as she has very very low muscle tone there. It has been part of the reason she struggles to walk. I kind of liken it to trying to walk on stilts. Very little support. She got her braces a few weeks ago and we have seen a remarkable difference in her progress. The braces are giving her the stability to stand. And I am VERY PROUD to report Bella has taken her first steps holding only one of our hands. I can't explain what it felt like to look down holding Bella's hand and to have her take a few steps along side of me. Truly something to see. And she is so proud when she does it. Her face just glows.

Just this past week we were able to catch her on video standing unassisted for about 10 seconds. Now that doesn't sound like much, but it is a HUGE milestone. We have begun working with Bella using a walker now. She has taken to it well and it is our hope that this will be the catalyst to get her to be confident enough to start taking her steps unassisted. It is sometimes difficult to watch when we work with her because it is very obvious how hard it is for her to make her body do what her mind so desparetly wants it to do. You can see the determination in her eyes as she basically "wills" herself to move. My heart is usually a combination of so much PRIDE and a bit of heartache too. It is hard to watch her struggle.

Horse therapy is still, by far, Bella's most favorite thing. As soon as we turn into the driveway of the stable she starts to smile. She rides "Pumpkin" each week and she is a natural horsewoman. She does so well that the physical therapist wants to have Bella start to learn "trotting"! Can you imagine?? Its an amazing therapy and the joy it gives her is remarkable. Everyone in the family wants to chip in and buy her a horse...much to the dismay of my husband who has no desire to "muck" the stalls each morning.

Occupational and speech therapy seems to be our toughest road. The emphasis is on helping Bella find ways to communicate her wants and needs. It is a long, slow process. I have to remind myself that she is only 2 1/2. We have time and we are on the right road, I just wish it was a little less bumpy. A lot of Bella's frustration remains in her inability to express her feelings and needs to us. When you look in Bella's eyes at any given moment you can see a sea of things she wants to say but the words remain off shore, out of reach.

Over these few months I have seen Bella grow and mature in a way which surprised me. She plays differently now, is more interested in toys and her favorite cartoons. She laughs at jokes and moves and grooves to her favorite show "Fresh Beat Band". We have always known that Bella's receptive language is very high, but lately it is so abundantly clear that she hears and understands EVERYTHING! I have always thought that this is the cruelest part of Rett Syndrome.

In December Bella was seen again by Dr. Omar Khwaja at Childrens Hospital in Boston. He remarked again at how healthy she looked and how strong she had gotten. He was visibly pleased with that. And believe me when I tell you, Bella was putting on a show that day...giggling and smiling at Dr. K. He actually laughed and said she was quite "cheeky". Dr. K is from England and it was hilarious to hear that. So now she is my Cheeky Monkey.

Over the last few months I had noticed a bit of odd behavior by Bella which made me a bit nervous that perhaps she was having increased seizure activity. Before Rett Syndrome my definition of a "seizure" was what you see on tv... someone dropping to the floor and flopping their legs and arms. That understanding of what a seizure consists of is absolutely WRONG. There are so many kinds of seizures.. some that last only seconds and are almost impossible to detect if you don't know what you need to look for. I try to balance keeping Bella under a microscope with letting her be a little kid, but I am petrified of what uncontrolled seizures can do to her. So I always err on the side of getting her seen by her neurologist. I described what I had been seeing and he had enough concern to schedule Bella for another EEG. This time a 6 hour EEG done at Rhode Island Hospital. This way "if" anything is occurring at least we can be on top of it. Bella had her EEG on January 17th and in usual style she was a trooper. Giggling and smiling with her head all wrapped up in gauze. Personally I think she was loving having Mommy and Daddy all to herself without Zackary fighting her for our attention. We have not received the results yet but I am viewing this as preventative medicine. I just want to know I haven't missed any opportunities to keep her healthy.

Seizure control and therapies are such an integral part of what we do to manage Rett Syndrome in Bella's life. But there are some things we just can't do anything about. Those are the things that make some days a challenge. In order the "uncontrollables" that I struggle with the most are, mouthing of everything she picks up, teeth grinding, constant hand movements and body movements in general, body rocking and biting/head banging. I just want to be able to wave a wand and remove all those chains from her. But I can't, not yet.

However, I think it is important for everyone who knows Bella or reads this blog to understand what a happy child she is. Looking at Rett Syndrome on the internet and not really having much interaction with a girl with Rett, it may be hard to understand that. But it truly is one of the most amazing things. Most days Bella wakes up happy, giggles and plays, listens to her favorite music, eats her favorite foods and cracks up at her brother's antics. She is a loving sweet hearted angel. This is truly a gift for us...because the fact that she is happy and content most days, helps when we have one of "those" days. When we have one of "those Rett days", that day can feel like 10 consecutive days. It is draining, physically and emotionally. So when its over and the giggles and smiles reappear, it is like a re-set button. We get up, dust off and move forward.

As for me, well, I have those "Rett Days" myself. A little less often than I used to, but I do have them. The holidays brought with them hurdles that I had to get over. It was after all the "first" holidays we have had since Bella's diagnosis. One of the traditional joys of Christmas is seeing the joy in a child's eyes when they watch as their house is transformed into a Christmas wonderland, as the tree goes up, when they see Santa or sing carols or get that most desired toy. When I was pregnant with Bella, my first child, I dreamed about all of those moments. However, those are now lost dreams, dreams I had to grieve for in order to accept the new dreams, which can be just as wonderful, to enter my life. And so, even though it was through some tears, I did transform our house into a Christmas wonderland and was committed to doing so with no expectations of how Bella would perceive it or react to it.

It was a similar challenge with getting her the "perfect" gifts. I wanted so badly to get the gift that she would light up to have, that would cause her to scream with delight, to cause her to say "Oh Mommy, I wanted this so bad". But again, I had to let go of those dreams. It was not easy to walk through the mall or toy stores, knowing I could not buy her age appropriate things, such as barbies, or princess dolls with tiny shoes and tiaras...only to have her put them in her mouth. I couldn't get those cool arts and crafts kits which again could be a danger to her. So again, I washed those old dreams out with a healthy cry and put my thinking cap on... what makes my girl happy... music, horses, books, blowing bubbles... I started searching website for adaptive toys for special needs children and it was amazed at what I could find. So again, a new kind of excitement began and the realization that new dreams would and could find us.

I worked hard at having absolutely no expectations for Christmas Eve or Christmas morning and let me tell you what happened... I was the one who received the BIGGEST BEST gift of all. Bella had an amazing time, and absolutely positively knew there was something special about the day..she was excited and happy and giggly and silly! She enjoyed having her family with her round the clock, she enjoyed opening gifts, it was just perfect. A bona fide Christmas miracle for me. And a very important lesson..my dreams are not lost, they are just new and not in the shape I thought they might be. But it doesn't make them any less wonderful. In fact, some of my new dreams may be even better than what I had originally hoped for. Only time will tell.

Speaking of time, as New Year's Eve rolled around I felt an overwhelming need to just skip it. Let 2011 fade into the darkness quietly..I wanted it gone, done, over. A year like no other. A year of unimaginable heartbreak and pain, a year that had the most profound effect on my life than any other before it. A year that irrevocably changed me, for better or worse or maybe a little of both.

At midnight, it was about closing that chapter in our lives. It was about knowing in my heart that 2012 is going to bring miracles. That "someday soon" our Bella is going to be released from the chains of Rett Syndrome. It is about believing and having faith in the countless brilliant minds that are dedicating their lives to finding the answer. It was about new HOPE, new DREAMS and a fierce determination to do whatever I have to do to make sure Bella stays the happy, smart, beautiful, sweet, angelic girl I gave birth to.