Thursday, June 21, 2012
365 Days....
One year ago today our lives were irreperably changed. With one phone call our world was turned upside down, never to be the same again. Our beautiful baby girl was diagnosed with Rett Syndrome. I feel it a herculean task to try to relay everything that has happened in the past 365 days. There have been so many different feelings, triumphs, heartbreaks, hopes, fears, joys, sorrows.. you name it, we have had it.
For me, looking back, I think the first few months were spent in disbelief plus a pretty abundant amount of grief. Once I realized that it was ok to grieve, that my feelings of loss were not unwarranted, there were tears, and lots of them. To be honest, there was more than a healthy dose of anger as well. I was mad, so angry that this could happen to our baby. Aren't there enough nasty adults around to inflict this kind of thing on??? I didn't drink when I was pregnant, I took all the vitamins and then some, I followed all the rules...why?? Why do women who don't take care of themselves or get pregnant as teenagers and flaunt it on tv have perfectly healthy babies??? I quickly realized that I wasn't going to get any answers to these questions..that I had to come to terms with it in some way.
I also realized that this was our new reality and that our baby needed help and I needed to be not only her mother, but her voice, her advocate, her warrior... I needed to get her all the things I could to help her fight. So the months that followed were filled with research and devising a plan of action. What therapies were needed? How do we get the best ones? How were we to balance our existing life of work, taking care of a household and a young son with Bella's needs? Soon the calendar became filled with physical therapy, occupational therapy, speech therapy, hippotherapy, more therapies than I ever knew existed. We learned a new language, we learned about the medications Bella needed and we started our new routine. It was bumpy and frustrating and at times it felt so completely overwhelming and it was lonely. We were no longer one of the many, we were one of the few. Our reality became completely different than our friends and others in our lives. It was at this time that I realized I needed to reach out to others in the same situation. I needed to reach out to other Rett families. It was by far a turning point for me and reflecting now, it was the best thing I could have done.
We were embraced immediately by this community, other Moms and Dads, Grandparents, sister and brothers of Rett Angels and suddenly, I felt less alone, less different. Over the course of this year I have met some of the most amazing people I have ever met in my entire life. These women (I say women because that really is the majority of who I interact with, but it does not in ANY way discount the husbands, fathers, and other members of families I have met) but these women have become such an integral part of my existence. They are a constant source of comfort, understanding, inspiration and pure, true friendship. For me, as Bella's Mom, it is such a gift to not have to explain myself, to be able to just give a look or say a word and immediately have other Moms know exactly what I mean, without me having to say it. Its not a club I wanted to be in but I am so THANKFUL that I am now a part of it.
As the year went on, and the shock subsided some, something amazing happened, we began to see our Bella thrive! We began to see that all the juggling and expenses and constant vigilence was paying off. Bella was making such amazing progress... she went from barely being able to sit up to taking steps while holding our hands, then while holding one hand, to scooting around on her little bike, and as recently as this week, to swimming in the pool at therapy alone with her swimmies and a tube!!! The months I spent crying in the hallway outside the physical therapy room as Bella screamed and whaled during her session were worth it!! Worth every second..to see the pride on her face as she swims around. To know that now at physical therapy all you hear are her giggles as she works at climbing a stair or two.
With time, I have accepted that our milestones are different..but I also have learned that our reward is just as sweet and dare I say perhaps even sweeter than those I had expected before Bella was born.. to catch the rare "Ma" or "Da" or "Yeah"..it is just priceless. We all sort of look at each other and say "Did you just hear that??"..as Bella sits there and smiles.
Over this past year we have learned so much about our daughter, who continues to patiently wait for us to understand. We are finally catching on to her ways of communicating with us. She is so incredibly smart and has worked so hard at educating us as to what she needs and what she is feeling. Our reward?? Well, its that one in a million, one million watt Bella smile. Ahhhh.... it never, ever, ever loses its effect.
To say I have changed over this past year would be an understatement.. everything I have ever believed in has been tested. Someone once said that "my soul was changing" and I believe that to be true. It has been a forced change, that is for sure, and it has been painful, but it has been for the better. I can honestly say that I truly know what is important in this life and this is not lip service, I believe it with everything I am... it is not how much money you make, or what kind of car you drive, or what clothes you wear, or what your job title is, or how many vacations you go on, or who has more than you... there is absolutely nothing more important in this life than family, MY FAMILY.... my husband, my daughter and my son, first and foremost, without reservation, 100% unconditionally, are the MOST IMPORTANT thing. They are what I live for. I am nothing without them. And I know that I will move Heaven and Earth, I will claw and scratch and fight to make sure they are safe, happy, healthy and feel loved. If I can do that, then and only then will I be successful.
I have said it before, but I will say it again, Bella has given us the gift of perspective. She also has shown us the good in people, the generous, caring, loving goodness in humanity. From family to absolute strangers, Bella has had a positive effect on everyone who comes in contact with her and I could not be prouder. I always say she brings out the good in everyone she touches.
We have seen how united our family and friends have become in this fight. And in all honesty, sometimes the support and love and genuine caring has come from the least expected places, from people who had either been part of our lives in the past or had just briefly passed through..and then, of course, there are the constants, those who have always been here and who have never left..who have only loved us stronger, held on to us tighter, who have laughed and cried right alongside us, who have never waivered. To say we could have never made it through this year without them would be an understatement.
We have a long road ahead of us..and I am learning that the key to survival is pacing. I am learning that it is an up and down ride, that there are waves that will continue to throw us for twists and turns. There will still be days of grief, saddness, fear, joy, and hope, and that each must be acknowledged to get through. I am acutely aware that it "takes a village"..and that we have more than a village, we have an ARMY. Bella's Army.
This year has also illuminated something I always knew,from the day I fell in love with him...that there is no better man, partner, father or husband than mine. He has endured so much this past year and has always managed it with such grace and patience and quiet strength. It hasn't been easy..its not easy on either of us alone, nevermind as a couple. But he has given everything he has to our family, to our marriage and I could not imagine any greater partner in this fight. His unending love for his children, for his Bella, is breathtaking. I am so grateful he chose me.
What will the next 365 days hold.. that remains to be seen.. although I have some pretty high hopes and some crazy mad determination that it is going to blow this past year away. Bella starts the clinical trials in September/October, research and trials are popping up all over the country and the world.. the race to a cure is on, it is relentless and those involved will not stop until its done. As I am writing this, the World Rett Conference, yes, by world, I mean people from all across the globe, are meeting in New Orleans to discuss the breakthroughs in science, what the research is showing and all the ways they are fighting this demon. I will most definitely keep you posted on what I find out!!
Bella will start school this summer and I know she will just love being around other children and will continue to thrive and make HUGE strides..lauging, giggling and stealing hearts along the way.
Well, Rett Syndrome, we made it, one year down and though you might have thought you got us pretty good, we are still standing. In fact, we are stronger, we are re-grouping and we are coming for you..there is no place to hide.
Sunday, January 22, 2012
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.
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.
Tuesday, November 1, 2011
Fighting the Good Fight
Time for a very overdue post..life has gotten so busy that I am finding it hard to find time to write. Which is very disappointing because as I have said before, it helps me. A lot.
October has ended and with it, so has "Rett Syndrome Awareness Month". We, as a family, did quite a bit to bring awareness for Rett Syndrome. I am beyond proud of all of the efforts made by my amazing family. Let me re-cap:
We attended the "Blue Sky Girls" event in Boston on October 15, 2011. This event was started in New York state and on October 15, 2011 Rett Girls and their families "climbed" various steps at various buildings in a show of support and pride at how hard our girls work, even in the face of all their struggles. The event was not only nationwide but also worldwide. It was an absolutely beautiful day. Blue skies for sure. 31 families from Massachusetts were in attendance. We were joined by our family and best friends and a dozen Rehoboth Firefighters, in full uniform. Jeff had been asked if he could get "a few" firefighters to assist in carrying those girls who could not climb the stairs themselves. He sent out the call and let me tell you, our AMAZING firefighters answered, as usual. They lined the stairs of the Harvard Medical School and as each girl and her family climbed those stairs it was a breathtaking sight. Jeff carried Bella as we walked up the stairs and between the pride I felt for him and the emotion I was feeling for Bella, well let's just say, it was quite a moment. It was the first time we had met other "Rett Angels" and I have to say as nervous as I was to do so, it was the best part of the day for me. These girls are so special and bring so much joy. Their smiles are pure sunshine. After the climb, we had a lunch where we were introduced to the Researchers from MIT who are working so hard for our cure. It was a very special day.
October also brought out everything PURPLE!! Funny that Rett Syndrome's color is purple. My family will tell you that since Bella was born I have said her favorite color was purple and that she looked so good in purple. When we had the house renovated, we even painted her room purple.. go figure.. Maybe we should have stuck with pink!! We painted our nails and toes purple in honor of Bella. It was a huge show of solidarity and I was constantly receiving pictures and posts on Facebook with my friends showing their purple toes..it meant the world to me.
On October 20, 2011 our entire family attended the Festival of Food and Wine in Boston which is, if not the leading, one of the biggest fundraisers for Rett Syndrome in the country. Over the last 10 yeasrs they have raised over 5 million dollars!!! This event almost single handedly funds the clincial trials that are taking place at Children's Hospital in Boston. These trials are testing the possible cure for Rett! When we heard about the event and found out all the ways we could get involved, in typcial fashion, my family jumped right in. The event had a silent and live auction, which is how most of the money is raised. My father in law, who has worked for years helping other charities as part of his job with the Boston Bruins organization was by far the MVP of the event. (Actually that is what they named him that night!) He worked tirelessly to get one-of-a-kind auction items and donations and succeeded in making the auction a HUGE success. We are so proud of him!!!!
In addition, we had our friends, Fred and Donna Paolucci attend and Fred donated his "Dig-it" beach umbrella as a silent auction item. One of the BEST friends a girl could have, Johnna Cutlip, raised a boat load of money in a two week span that helped donate additional items to the silent auction. While we have not received the total amount raised, I hear it was a BIG night! It was a moving, emotional and wonderful evening.
And while I am on the subject of amzaing friends..my oldest and dearest friend in the world, Bonnie Ashby has been a fundraising machine down south in Atlanta. She started with a Stella and Dot jewelry event at her home where 50% of the profits were donated to Rett and then followed that up with "Baking for Bella" which was a bake sale in the lobby of her office building where her and her colleagues baked goodies and sold them for Rett. It boggles my mind how kind people are.. how selfless..how truly giving they can be for a little girl and a family they have never met.. all things I had forgotten in this sometimes jaded world.
And then, there is the efforts of my sister in law, Heather. I wish I could describe this and truly do it justice, but I am not sure I can, but here goes.. Heather is a third grade teacher and her love for Bella has been abundant from the moment Bella was born. As much as Heather's heart has been broken by this evil thing called Rett Syndrome, she has dug in and has poured herself into raising awareness for Rett and raising money for the cure. Now, I have to give some background quickly.. Heather often uses Bella and Zackary as examples to her students and each year, her students hear all the stories of Bella and Zack's antics..at some point every year, we bring Bella and Zack in for a visit. The first time I ever brought Bella in to her school I thought we were being ambushed by the Papparazzi!! Everyone knew Bella.. EVERYONE! It was the sweetest thing. As the story of Bella's diagnosis has reached both Heather's past and present students, the outpouring of love and support has been impossible to describe.
Each year, the teachers donate money to a local charity so that they can wear jeans on Fridays. During a teacher's meeting this year, Heather asked if the charity could be Rett Syndrome. It was up to the teachers to decide if they wished to donate all or part of the money used for "Jean Friday" to Rett Syndrome. I can say, the checks came rolling in. It was a wonderful tribute to Heather. Then, just this past Friday, Heather arranged "Wear Purple Day" to finish out Rett Syndrome Awareness Month. Her entire school participated, it was a sea of purple and donations were given, even from "piggie banks". It was an overwhelming and moving show of support for both Heather and Bella. I am so proud of her and feel so blessed to have her as my sister and that my children have such an amazing young woman as their Auntie.
So as you can see..we are fighting the good fight.. we are doing our part so that we can be rid of Rett Syndrome.. so that NO other family must go through this.
October also brought good news for us as Bella passed her "swallow test" with FLYING colors! She is eating, chewing and swallowing just fine!!! She has been on acid reflux medicine for about a month and we have seen a significant reduction in her coughign and gagging. WHOO HOO!
Bella is now 28 pounds 2 ounces.. she continues to thrive with her weight and her muscles are getting stronger. She has made much progress and we are feeling so thankful and blessed. I cannot help but think that it is due, not only to my daughter's amazing spirit, but to all the prayers and love and positive energy that she is surrounded by.
October has been pretty good to us. We are fighting, fighting hard, through it all, the ups the downs, the saddness and the joy, and I am beginning to believe that Rett Syndrome is starting to question whether it was a good idea to take on the Rutko/Ceritto families and TEAM BELLA!!!!
October has ended and with it, so has "Rett Syndrome Awareness Month". We, as a family, did quite a bit to bring awareness for Rett Syndrome. I am beyond proud of all of the efforts made by my amazing family. Let me re-cap:
We attended the "Blue Sky Girls" event in Boston on October 15, 2011. This event was started in New York state and on October 15, 2011 Rett Girls and their families "climbed" various steps at various buildings in a show of support and pride at how hard our girls work, even in the face of all their struggles. The event was not only nationwide but also worldwide. It was an absolutely beautiful day. Blue skies for sure. 31 families from Massachusetts were in attendance. We were joined by our family and best friends and a dozen Rehoboth Firefighters, in full uniform. Jeff had been asked if he could get "a few" firefighters to assist in carrying those girls who could not climb the stairs themselves. He sent out the call and let me tell you, our AMAZING firefighters answered, as usual. They lined the stairs of the Harvard Medical School and as each girl and her family climbed those stairs it was a breathtaking sight. Jeff carried Bella as we walked up the stairs and between the pride I felt for him and the emotion I was feeling for Bella, well let's just say, it was quite a moment. It was the first time we had met other "Rett Angels" and I have to say as nervous as I was to do so, it was the best part of the day for me. These girls are so special and bring so much joy. Their smiles are pure sunshine. After the climb, we had a lunch where we were introduced to the Researchers from MIT who are working so hard for our cure. It was a very special day.
October also brought out everything PURPLE!! Funny that Rett Syndrome's color is purple. My family will tell you that since Bella was born I have said her favorite color was purple and that she looked so good in purple. When we had the house renovated, we even painted her room purple.. go figure.. Maybe we should have stuck with pink!! We painted our nails and toes purple in honor of Bella. It was a huge show of solidarity and I was constantly receiving pictures and posts on Facebook with my friends showing their purple toes..it meant the world to me.
On October 20, 2011 our entire family attended the Festival of Food and Wine in Boston which is, if not the leading, one of the biggest fundraisers for Rett Syndrome in the country. Over the last 10 yeasrs they have raised over 5 million dollars!!! This event almost single handedly funds the clincial trials that are taking place at Children's Hospital in Boston. These trials are testing the possible cure for Rett! When we heard about the event and found out all the ways we could get involved, in typcial fashion, my family jumped right in. The event had a silent and live auction, which is how most of the money is raised. My father in law, who has worked for years helping other charities as part of his job with the Boston Bruins organization was by far the MVP of the event. (Actually that is what they named him that night!) He worked tirelessly to get one-of-a-kind auction items and donations and succeeded in making the auction a HUGE success. We are so proud of him!!!!
In addition, we had our friends, Fred and Donna Paolucci attend and Fred donated his "Dig-it" beach umbrella as a silent auction item. One of the BEST friends a girl could have, Johnna Cutlip, raised a boat load of money in a two week span that helped donate additional items to the silent auction. While we have not received the total amount raised, I hear it was a BIG night! It was a moving, emotional and wonderful evening.
And while I am on the subject of amzaing friends..my oldest and dearest friend in the world, Bonnie Ashby has been a fundraising machine down south in Atlanta. She started with a Stella and Dot jewelry event at her home where 50% of the profits were donated to Rett and then followed that up with "Baking for Bella" which was a bake sale in the lobby of her office building where her and her colleagues baked goodies and sold them for Rett. It boggles my mind how kind people are.. how selfless..how truly giving they can be for a little girl and a family they have never met.. all things I had forgotten in this sometimes jaded world.
And then, there is the efforts of my sister in law, Heather. I wish I could describe this and truly do it justice, but I am not sure I can, but here goes.. Heather is a third grade teacher and her love for Bella has been abundant from the moment Bella was born. As much as Heather's heart has been broken by this evil thing called Rett Syndrome, she has dug in and has poured herself into raising awareness for Rett and raising money for the cure. Now, I have to give some background quickly.. Heather often uses Bella and Zackary as examples to her students and each year, her students hear all the stories of Bella and Zack's antics..at some point every year, we bring Bella and Zack in for a visit. The first time I ever brought Bella in to her school I thought we were being ambushed by the Papparazzi!! Everyone knew Bella.. EVERYONE! It was the sweetest thing. As the story of Bella's diagnosis has reached both Heather's past and present students, the outpouring of love and support has been impossible to describe.
Each year, the teachers donate money to a local charity so that they can wear jeans on Fridays. During a teacher's meeting this year, Heather asked if the charity could be Rett Syndrome. It was up to the teachers to decide if they wished to donate all or part of the money used for "Jean Friday" to Rett Syndrome. I can say, the checks came rolling in. It was a wonderful tribute to Heather. Then, just this past Friday, Heather arranged "Wear Purple Day" to finish out Rett Syndrome Awareness Month. Her entire school participated, it was a sea of purple and donations were given, even from "piggie banks". It was an overwhelming and moving show of support for both Heather and Bella. I am so proud of her and feel so blessed to have her as my sister and that my children have such an amazing young woman as their Auntie.
So as you can see..we are fighting the good fight.. we are doing our part so that we can be rid of Rett Syndrome.. so that NO other family must go through this.
October also brought good news for us as Bella passed her "swallow test" with FLYING colors! She is eating, chewing and swallowing just fine!!! She has been on acid reflux medicine for about a month and we have seen a significant reduction in her coughign and gagging. WHOO HOO!
Bella is now 28 pounds 2 ounces.. she continues to thrive with her weight and her muscles are getting stronger. She has made much progress and we are feeling so thankful and blessed. I cannot help but think that it is due, not only to my daughter's amazing spirit, but to all the prayers and love and positive energy that she is surrounded by.
October has been pretty good to us. We are fighting, fighting hard, through it all, the ups the downs, the saddness and the joy, and I am beginning to believe that Rett Syndrome is starting to question whether it was a good idea to take on the Rutko/Ceritto families and TEAM BELLA!!!!
Monday, October 3, 2011
Seasons Change....
The fall is here. It has always been my favorite time of year. Summer has ended and I have to say I am breathing a sigh of relief. This summer did not turn out quite the way I planned. I had images of Bella and Zackary running around the yard together, exploring the beach and reporting back with what they found. Bella leading the way with Zackary trying to keep up.
But it is ok.. because those images were replaced with what are now my memories of Summer 2011. Countless beach days with our FAMILY. The meaning of that word has always held great importance to me. Family is where you come from, constant, unchangeable. Since June 21, 2011 however I realize that family is all of that but it is much more as well, it expands beyond your blood, it is more than lineage or heritage. Family is pure love and support. Our family has grown this summer, ten fold.
For those who do not know it, October is Rett Syndrome Awareness month! So take out your purple and wear it proud!! Spread the word to a friend, encourage people to find out what Rett Syndrome is and how they can help the fight!
Since I have last posted we have started to reach out to other Rett families and support resources. It took me some time, but I was finally ready. I really needed to connect with other Rett families. When Bella was first diagnosed there was just an immediate sense of isolation, of life never being the same and that everything we knew had changed. Reaching out to those who have been there before us has brought a comfort that I cannot describe.
I met 9 other Rett Moms this month at a dinner. All 10 of us varied in age and our daughters varied in age and severity. Now you might think a dinner with 10 moms of daughters with a pretty devastating neurological disorder would be about as much fun as root canal..actually it was the opposite. It was WONDERFUL. You could immediately feel the love and bond that ties us all together.. we laughed and joked, in spite of ourselves and this Rett world we live in. What I took away was these women, most of whom have been on this road for the better of 10 years, still laugh, still live life and I cannot tell you how hopeful that felt to me.
Now for a Bella update...which is always the most important part of this blog of course... day after day Bella is just the happiest, most beautiful little girl in the world. Her smiles are endless and her giggles just keep the sun in the sky.
Bella is always on the move. I would say that is the biggest progress I can report. She now will rise up on her knees without the support of the couch or the table. When she is laying on her back on the floor and I go to lift her up she will actually put her feet down so that instead of me picking her up, she pulls to stand. She is getting stronger I can actually feel it. She hasn't started "cruising" yet. So although she will stand against the couch or coffee table she doesn't take steps around it. Slow and steady...
Bella LOVES her Kid Walk. We actually took it with us down to Bonnet Shores two weekends ago so that while we all watched the football game, she could have some mobility and independence, like Zackary. I will tell you, that took some deep breathes as it was the first time we took Bella out in public in her Kid Walk. I think Jeff and I went into immediate protective mode.. fear set in that people would somehow look at Bella in a negative, hurtful way. But to our most pleasant surprise..it was the opposite.. strangers just smiled at her and encouraged her to keep moving. And Miss Bella stole the show.. and a bunch of hearts along the way, of that I am sure.
The smile on her face was amazing. She was just so proud of herself being able to move around and that took all my fears away. I was filled with a sense of pride and found myself saying "that's MY girl". I felt that others should somehow be envious of me. Because that smile means that much, it is that powerful that I actually feel bad for those who don't feel it like I do.
On the medical front.. Bella was finally seen by the gastro doctor and was put on Previcid for her acid reflux. We explained our concern over her coughing and gagging and the doctor was hopeful that the acid reflux medicine would calm that down. Unfortunately Bella has to do a "Swallow Test" It is a modified barium test where she has to drink liquids of different thinkness to ensure that she is not aspirating any of her food/drinks. I need this test to be over and the results good..because when they start talking about "other methods of feeding" should she be aspirating, well let's just say I can't go there.
Bella's sleep still remains unpredictable but we have had many good nights in a row and that is such a relief. Her weighted blanket arrived tonight. For those of you who have never heard of a weighted blanket (geez where have you been??? LOL!) it is a soft cozy blanket filled with beans that weighs about four pounds. Apparently, the little bit of weight in the blanket, when put over someone with sensory integration issues, like Bella, it sends a signal to the brain to calm the body! Now of course I used it tonight and I know it could be a fluke, but Bella fell asleep QUICKLY and has been out like a light!! Got my fingers crossed on that one.
Bella's speech seems to be the most elusive. Gosh do I long to hear her voice. I ache to hear her mis-pronounce words like toddlers do. I just want to hear what she has to say. I look into her eyes all the time and I just feel that there is so much in there that she wants to say. Sometimes I just get tired of being the one doing all the talking. I know, hard to believe.
Bella and I do communicate though. Lately I feel this closeness to my little girl that I can't explain. Sometimes she just reaches over and pats me with her little hand, just at the right time, when I haven't said anything.. yet somehow knowing how much I needed that little pat. She laughs when I do our songs or our inside jokes. She is so smart. So unbelievably smart.
Tomorrow we go to the Augumentative Speech Department of Children's Hospital. Bella will be evaluated and we will have recommendations on what kind of communication devices or therapies are best suited for her. I am anxious for this as I just feel lost on this front. I know how to support her to walk (hold her hands, help her up) yet its very hard to figure out what is best to help her communicate. I just want to unlock the door..find the key and unlock the door that is holding my daughter prisoner.
So as one season ends, another one begins..kind of like the phases of Bella Kai's journey. She just keeps keeping on.. her endurance and strength are way beyond her two years. And we keep hoping and praying that before the end of another season we are that much closer to the cure.
But it is ok.. because those images were replaced with what are now my memories of Summer 2011. Countless beach days with our FAMILY. The meaning of that word has always held great importance to me. Family is where you come from, constant, unchangeable. Since June 21, 2011 however I realize that family is all of that but it is much more as well, it expands beyond your blood, it is more than lineage or heritage. Family is pure love and support. Our family has grown this summer, ten fold.
For those who do not know it, October is Rett Syndrome Awareness month! So take out your purple and wear it proud!! Spread the word to a friend, encourage people to find out what Rett Syndrome is and how they can help the fight!
Since I have last posted we have started to reach out to other Rett families and support resources. It took me some time, but I was finally ready. I really needed to connect with other Rett families. When Bella was first diagnosed there was just an immediate sense of isolation, of life never being the same and that everything we knew had changed. Reaching out to those who have been there before us has brought a comfort that I cannot describe.
I met 9 other Rett Moms this month at a dinner. All 10 of us varied in age and our daughters varied in age and severity. Now you might think a dinner with 10 moms of daughters with a pretty devastating neurological disorder would be about as much fun as root canal..actually it was the opposite. It was WONDERFUL. You could immediately feel the love and bond that ties us all together.. we laughed and joked, in spite of ourselves and this Rett world we live in. What I took away was these women, most of whom have been on this road for the better of 10 years, still laugh, still live life and I cannot tell you how hopeful that felt to me.
Now for a Bella update...which is always the most important part of this blog of course... day after day Bella is just the happiest, most beautiful little girl in the world. Her smiles are endless and her giggles just keep the sun in the sky.
Bella is always on the move. I would say that is the biggest progress I can report. She now will rise up on her knees without the support of the couch or the table. When she is laying on her back on the floor and I go to lift her up she will actually put her feet down so that instead of me picking her up, she pulls to stand. She is getting stronger I can actually feel it. She hasn't started "cruising" yet. So although she will stand against the couch or coffee table she doesn't take steps around it. Slow and steady...
Bella LOVES her Kid Walk. We actually took it with us down to Bonnet Shores two weekends ago so that while we all watched the football game, she could have some mobility and independence, like Zackary. I will tell you, that took some deep breathes as it was the first time we took Bella out in public in her Kid Walk. I think Jeff and I went into immediate protective mode.. fear set in that people would somehow look at Bella in a negative, hurtful way. But to our most pleasant surprise..it was the opposite.. strangers just smiled at her and encouraged her to keep moving. And Miss Bella stole the show.. and a bunch of hearts along the way, of that I am sure.
The smile on her face was amazing. She was just so proud of herself being able to move around and that took all my fears away. I was filled with a sense of pride and found myself saying "that's MY girl". I felt that others should somehow be envious of me. Because that smile means that much, it is that powerful that I actually feel bad for those who don't feel it like I do.
On the medical front.. Bella was finally seen by the gastro doctor and was put on Previcid for her acid reflux. We explained our concern over her coughing and gagging and the doctor was hopeful that the acid reflux medicine would calm that down. Unfortunately Bella has to do a "Swallow Test" It is a modified barium test where she has to drink liquids of different thinkness to ensure that she is not aspirating any of her food/drinks. I need this test to be over and the results good..because when they start talking about "other methods of feeding" should she be aspirating, well let's just say I can't go there.
Bella's sleep still remains unpredictable but we have had many good nights in a row and that is such a relief. Her weighted blanket arrived tonight. For those of you who have never heard of a weighted blanket (geez where have you been??? LOL!) it is a soft cozy blanket filled with beans that weighs about four pounds. Apparently, the little bit of weight in the blanket, when put over someone with sensory integration issues, like Bella, it sends a signal to the brain to calm the body! Now of course I used it tonight and I know it could be a fluke, but Bella fell asleep QUICKLY and has been out like a light!! Got my fingers crossed on that one.
Bella's speech seems to be the most elusive. Gosh do I long to hear her voice. I ache to hear her mis-pronounce words like toddlers do. I just want to hear what she has to say. I look into her eyes all the time and I just feel that there is so much in there that she wants to say. Sometimes I just get tired of being the one doing all the talking. I know, hard to believe.
Bella and I do communicate though. Lately I feel this closeness to my little girl that I can't explain. Sometimes she just reaches over and pats me with her little hand, just at the right time, when I haven't said anything.. yet somehow knowing how much I needed that little pat. She laughs when I do our songs or our inside jokes. She is so smart. So unbelievably smart.
Tomorrow we go to the Augumentative Speech Department of Children's Hospital. Bella will be evaluated and we will have recommendations on what kind of communication devices or therapies are best suited for her. I am anxious for this as I just feel lost on this front. I know how to support her to walk (hold her hands, help her up) yet its very hard to figure out what is best to help her communicate. I just want to unlock the door..find the key and unlock the door that is holding my daughter prisoner.
So as one season ends, another one begins..kind of like the phases of Bella Kai's journey. She just keeps keeping on.. her endurance and strength are way beyond her two years. And we keep hoping and praying that before the end of another season we are that much closer to the cure.
Sunday, September 18, 2011
Learning a New Language...
I have always found foreign languages fascinating and the thought of learning a new language like say, Italian, holds a certain romanticism to me. The new language I am learning now is the farthest thing from romantic. The months after Bella's diagnosis have been filled with learning...new words, phrases, etc..things I just never wanted to learn about. In order for everyone reading to understand a day in the life of Miss Bella Kai and her family I will have to share some of this new language with you. Words like, hippotherapy, sensory integration, augmentative communication device, weighted blanket, gastrointestinal, apraxia, IEP, medicaid waiver; etc etc..
Update on sweet Miss Bella.. she is now a whopping 27+ pounds! She has gained 20% of her body weight in a few months..which is GREAT news. Although, she has become quite the chunky monkey to carry around and dance with (one of her favorite things!). We recently saw her local neurologist and because of her weight gain her anti-seizure medication was increased. We had started to see some "pre-med" behaviors return, such as terrible nights with no sleep, teeth grinding and so we were hoping that with the increase in medication we might see those subside. I had also been noticing what I believed were the beginnings of "drop seizures" where Bella would have a momentary loss of muscle tone in her neck and her head would fall forward very rapidly. It would only last seconds but it concerned me. Now with the increase in medication which we have given to her a litle over a week and a half, I have not seen any head drops. And we are starting to get some relief in her sleep pattern..we are on night 2 of her falling right to sleep and most importantly, staying asleep. Rett girls have such a hard time calming their bodies so they can rest and fall asleep and if they awake, get back to sleep. I have read a lot about "weighted blankets" which are supposed to be wonderful in helping her sleep. So I have ordered one.. who would have thunk??
We are anxiously awaiting Bella's appointment back up in Boston on the 27th with the gastro doctor. Poor Bella has had a pretty big upswing in stomach issues. The issues cause her great discomfort and we spend long periods of the day trying to stop the screaming and head hitting. I just can't wait to get her some relief. She has days of constipation, days of diarrhea, days of acid reflux, days of gas cramps...its nearly impossible to keep her consistent and its just heartbreaking to see her go through it. I feel like once we get hold of that issue Bella will have a break, as this is really the only time she is "unhappy".
We have started a lot of new "therapies" as well. Bella has a busier schedule than the rest of the family and I have had to recently purchase a "white board" to keep it all straight!!!
Every Monday Bella goes to "hippotherapy"... now when I first heard this I was trying to figure out how a "hippo" was going to help Bella.. but thankfully I learned quickly that it was a horse that was going to help Bella, not a hippo!! This therapy is amazing... she actually will learn simulated actions in the developmental stage of say crawling, by getting up on her forearms and extended arms, all while on the horse. It will strengthen her legs, assist with balance and horses are known to aid in calming children with sensory issues and anxiety, like girls with Retts. Best of all.. Bella loves it!!! She seems to love animals and I am so happy she gets to do something that she enjoys seeing that she has some kind of therapy just about every day!
Bella continues to go to physical therapy twice a week where she most often does her session on the pool. She may be warming to the idea as now she only screams for the first 20 minutes.. we have even seen a few smiles during the remaining 25 minutes. Her therapist reports that he can absolutely see and feel that Bella's muscle's have gotten stronger.
On the other days Bella has Early Intervention therapy which basically is somewhat like "occupational therapy" where things like teaching her to "stack blocks" and "empty/fill" and other similar activities are done. I have noticed that Bella does seem to be "playing" for the first time. She loves this musical soccer ball that Zackary received for his birthday. When you roll it music either plays or it counts the number of rolls. Bella will roll that ball on her own and follow it all over the house. She will give it a good roll, scoot over to where it is and roll it again. It is wonderful!!! I can't tell you the joy it brings us to see her playing!! That is hard to really explain unless you have experienced a child who has never played. I also see her looking at her toys differently and acting more appropriately with them. She will hug and kiss a baby doll, she will spin objects on toys or bang down a peg with her hand.
Best of all.. Bella has been an ACE on a little bike she received from someone very special to her. When we first put her on it she would sit and be very unsteady with her balance. It has not taken her long to become a PRO. She gets on it and cruises around the house, self propelling herself with her legs. And her balance has become very good and she rarely falls off. As recent as today I have seen additional progress where she is starting to propel herself alternating legs rather than using both legs at the same time. I am encouraged by this because alternating legs is what she needs to learn to walk. She actually rolled right into our pantry and I was lucky enough to catch her pulling up to standing from her seat on the bike by using the racks in the pantry.
When you are with Bella every day it can seem like nothing is happening, no progress is getting made or if there is any, it is painfully slow. That is how it is for me... until I actually sit here and write all of her accomplishments and find myself smiling. I guess it is just never going to be fast enough. When you want your child to walk and talk, it just can't happen soon enough. But I am thankful I have all this progress to report.
Bella also starts speech therapy this week. I am so hopeful that we can provide Bella with a way to communicate with us. Which to me is still one of the most painful parts. We will be working with Bella to gain the ability to deliberately point and select with her fingers. If we can do this, Bella could benefit from the use of a communication device. It really is amazing what is out there to help children with special needs. The device that Bella will start with is pretty elementary but could open a whole world for us.. it will show a variety of pictures and Bella will select what she wants to communicate, such as pictures of food, or a glass or of bed etc. When she selects it, the recording will say "I am thirsty".. etc. It will give her a voice.. so she can express her needs. Simple as that. Imagine not being able to express something so simple as that but knowing in your head you would really like a drink....a living hell if you ask me. And I will be damned if my daughter stays trapped like that.
So as Sunday night comes to a close, I am excited to start another week, tomorrow Bella has PT and Horses... busy little girl, busy Mommy and Daddy. But as each new week begins there is new promise, for more progress. And with each new week there is hope. Hope that a cure will come soon and that all of this work Bella is doing now will help her transition quickly once the cure is found. So she will look up at me and say "See Mom, it all paid off, I got this.."
Update on sweet Miss Bella.. she is now a whopping 27+ pounds! She has gained 20% of her body weight in a few months..which is GREAT news. Although, she has become quite the chunky monkey to carry around and dance with (one of her favorite things!). We recently saw her local neurologist and because of her weight gain her anti-seizure medication was increased. We had started to see some "pre-med" behaviors return, such as terrible nights with no sleep, teeth grinding and so we were hoping that with the increase in medication we might see those subside. I had also been noticing what I believed were the beginnings of "drop seizures" where Bella would have a momentary loss of muscle tone in her neck and her head would fall forward very rapidly. It would only last seconds but it concerned me. Now with the increase in medication which we have given to her a litle over a week and a half, I have not seen any head drops. And we are starting to get some relief in her sleep pattern..we are on night 2 of her falling right to sleep and most importantly, staying asleep. Rett girls have such a hard time calming their bodies so they can rest and fall asleep and if they awake, get back to sleep. I have read a lot about "weighted blankets" which are supposed to be wonderful in helping her sleep. So I have ordered one.. who would have thunk??
We are anxiously awaiting Bella's appointment back up in Boston on the 27th with the gastro doctor. Poor Bella has had a pretty big upswing in stomach issues. The issues cause her great discomfort and we spend long periods of the day trying to stop the screaming and head hitting. I just can't wait to get her some relief. She has days of constipation, days of diarrhea, days of acid reflux, days of gas cramps...its nearly impossible to keep her consistent and its just heartbreaking to see her go through it. I feel like once we get hold of that issue Bella will have a break, as this is really the only time she is "unhappy".
We have started a lot of new "therapies" as well. Bella has a busier schedule than the rest of the family and I have had to recently purchase a "white board" to keep it all straight!!!
Every Monday Bella goes to "hippotherapy"... now when I first heard this I was trying to figure out how a "hippo" was going to help Bella.. but thankfully I learned quickly that it was a horse that was going to help Bella, not a hippo!! This therapy is amazing... she actually will learn simulated actions in the developmental stage of say crawling, by getting up on her forearms and extended arms, all while on the horse. It will strengthen her legs, assist with balance and horses are known to aid in calming children with sensory issues and anxiety, like girls with Retts. Best of all.. Bella loves it!!! She seems to love animals and I am so happy she gets to do something that she enjoys seeing that she has some kind of therapy just about every day!
Bella continues to go to physical therapy twice a week where she most often does her session on the pool. She may be warming to the idea as now she only screams for the first 20 minutes.. we have even seen a few smiles during the remaining 25 minutes. Her therapist reports that he can absolutely see and feel that Bella's muscle's have gotten stronger.
On the other days Bella has Early Intervention therapy which basically is somewhat like "occupational therapy" where things like teaching her to "stack blocks" and "empty/fill" and other similar activities are done. I have noticed that Bella does seem to be "playing" for the first time. She loves this musical soccer ball that Zackary received for his birthday. When you roll it music either plays or it counts the number of rolls. Bella will roll that ball on her own and follow it all over the house. She will give it a good roll, scoot over to where it is and roll it again. It is wonderful!!! I can't tell you the joy it brings us to see her playing!! That is hard to really explain unless you have experienced a child who has never played. I also see her looking at her toys differently and acting more appropriately with them. She will hug and kiss a baby doll, she will spin objects on toys or bang down a peg with her hand.
Best of all.. Bella has been an ACE on a little bike she received from someone very special to her. When we first put her on it she would sit and be very unsteady with her balance. It has not taken her long to become a PRO. She gets on it and cruises around the house, self propelling herself with her legs. And her balance has become very good and she rarely falls off. As recent as today I have seen additional progress where she is starting to propel herself alternating legs rather than using both legs at the same time. I am encouraged by this because alternating legs is what she needs to learn to walk. She actually rolled right into our pantry and I was lucky enough to catch her pulling up to standing from her seat on the bike by using the racks in the pantry.
When you are with Bella every day it can seem like nothing is happening, no progress is getting made or if there is any, it is painfully slow. That is how it is for me... until I actually sit here and write all of her accomplishments and find myself smiling. I guess it is just never going to be fast enough. When you want your child to walk and talk, it just can't happen soon enough. But I am thankful I have all this progress to report.
Bella also starts speech therapy this week. I am so hopeful that we can provide Bella with a way to communicate with us. Which to me is still one of the most painful parts. We will be working with Bella to gain the ability to deliberately point and select with her fingers. If we can do this, Bella could benefit from the use of a communication device. It really is amazing what is out there to help children with special needs. The device that Bella will start with is pretty elementary but could open a whole world for us.. it will show a variety of pictures and Bella will select what she wants to communicate, such as pictures of food, or a glass or of bed etc. When she selects it, the recording will say "I am thirsty".. etc. It will give her a voice.. so she can express her needs. Simple as that. Imagine not being able to express something so simple as that but knowing in your head you would really like a drink....a living hell if you ask me. And I will be damned if my daughter stays trapped like that.
So as Sunday night comes to a close, I am excited to start another week, tomorrow Bella has PT and Horses... busy little girl, busy Mommy and Daddy. But as each new week begins there is new promise, for more progress. And with each new week there is hope. Hope that a cure will come soon and that all of this work Bella is doing now will help her transition quickly once the cure is found. So she will look up at me and say "See Mom, it all paid off, I got this.."
Thursday, September 1, 2011
A Mother's Ramblings....
There were times in my life when I would imagine how great it would be to take off and back pack around Europe or jump in a car and just drive with no given destination. It wasn't too long into those daydreams when I would start laughing, knowing myself way too well, and thinking..there is NO way that would happen..I need maps and guide books, itineraries and hotel reservations.. all done way in advance. I now find that ironic. When I started this blog I thought I aptly entitled it "Bella Kai's Journey". I have come to realize that it may not be very accurate. It is more than Bella's journey. It is her entire family's journey. On June 21, 2011 we all started out together, bound by one goal...survival. Its funny, I didn't even have time to pack a bag. Its only been a little over 2 months and I feel like we have already traveled a million miles. And although we are all out there together, we are all wearing very different traveling shoes. It has become necessity that we all follow our own compass as to which ways to turn for it isn't an easy journey.. there are so many pitfalls that come completely out of the blue.
I myself have taken many turns..much of them alone, truly believing I know the right way (I was never really good with directions). You see, that is how I came to be at the bottom of a very deep well. Just didn't see it coming, I wasn't prepared. Even though the fall was quick, getting out seems to be a bit tougher. Oh there are days where my efforts are rewarded and I see that I have scratched and pulled myself up about 5-10 feet. I look up and see the light getting closer, bigger..and then it happens, I slip and bang, right back at the bottom of the well. This seems to happen over and over again.
Now my fellow travelers, those who are most dear to me in the entire world, they never criticize my path, rather they seem to come running from wherever they might be on their own part of this journey and they join together and try to come up with solutions to get me out of that well. Yet, how fair is that? They have all hit their own pitfalls along this road, of that I am sure. But nevertheless they are there. And despite their very best efforts, I am still at the bottome looking up at all of their faces.. feeling disappointed in myself and feeling that I have let them down.
Before this journey began I really did believe I was a pretty good tour guide, that I could navigate best for my friends and family. I had big plans for teaching my children these good techniques and preparedness. I guess that is the funny thing about journeys.. they never turn out quite as you thought they would.
And the funny thing about being at the bottom of a well.. it gives you a lot of time to think. Surprisingly my thoughts are not of doom and gloom..no, not at all.. the thoughts that fill my head are of my children and my husband. I see Zackary's big blue eyes full of devilish delight and I hear his sweet laughter as he calls after his sister. I hear the pitter patter of his chubby little feet as he shows off how good he is at running. I see my husband's face and I remember the first time I knew I was in love with him. How powerful that feeling was that it nearly blew me over. I instantly feel that feeling he gives me which just makes me want to be a better person. But most of all.. I see Bella...I see her smile. Its not just any smile.. it is an innocent, pure, perfectly angelic smile. It throws light down the well and almost blinds me for a second...but then my eyes adjust and her face is clear. She is at the top of the well and she is speaking to me, without words, she is telling me all I need to know to get out. Then she giggles that contagious, heartwarming giggle that wraps around me, it is as if she is laughing at how silly I am for getting stuck down there in the first place. I find myself pulling up, up and out.
I stand alone at the top of the well and look back down at where I have been for the last few days. And I say a quick prayer that I don't make a wrong turn like that again. I am not naive enough to think it may not happen again, or that I won't encounter other dangerous pitfalls but one thing is abundantly clear..I do have a guide, a teacher in the most unexpected form..for she is only 2 years old. Yet despite her youth and tiny size, she guides me so easily and gently, as if she has done this a million times before. She leaves me with no doubt that she is willing to do it a million more. Her love is unconditional and all she needs to do is smile and wrap her small arms around my neck. And for that moment, the next few steps light up in front of me. Not the whole path, because if I am learning nothing else, it is to go slow, take in all that is around me. Marvel at the beauty, one moment, one step at a time.
I myself have taken many turns..much of them alone, truly believing I know the right way (I was never really good with directions). You see, that is how I came to be at the bottom of a very deep well. Just didn't see it coming, I wasn't prepared. Even though the fall was quick, getting out seems to be a bit tougher. Oh there are days where my efforts are rewarded and I see that I have scratched and pulled myself up about 5-10 feet. I look up and see the light getting closer, bigger..and then it happens, I slip and bang, right back at the bottom of the well. This seems to happen over and over again.
Now my fellow travelers, those who are most dear to me in the entire world, they never criticize my path, rather they seem to come running from wherever they might be on their own part of this journey and they join together and try to come up with solutions to get me out of that well. Yet, how fair is that? They have all hit their own pitfalls along this road, of that I am sure. But nevertheless they are there. And despite their very best efforts, I am still at the bottome looking up at all of their faces.. feeling disappointed in myself and feeling that I have let them down.
Before this journey began I really did believe I was a pretty good tour guide, that I could navigate best for my friends and family. I had big plans for teaching my children these good techniques and preparedness. I guess that is the funny thing about journeys.. they never turn out quite as you thought they would.
And the funny thing about being at the bottom of a well.. it gives you a lot of time to think. Surprisingly my thoughts are not of doom and gloom..no, not at all.. the thoughts that fill my head are of my children and my husband. I see Zackary's big blue eyes full of devilish delight and I hear his sweet laughter as he calls after his sister. I hear the pitter patter of his chubby little feet as he shows off how good he is at running. I see my husband's face and I remember the first time I knew I was in love with him. How powerful that feeling was that it nearly blew me over. I instantly feel that feeling he gives me which just makes me want to be a better person. But most of all.. I see Bella...I see her smile. Its not just any smile.. it is an innocent, pure, perfectly angelic smile. It throws light down the well and almost blinds me for a second...but then my eyes adjust and her face is clear. She is at the top of the well and she is speaking to me, without words, she is telling me all I need to know to get out. Then she giggles that contagious, heartwarming giggle that wraps around me, it is as if she is laughing at how silly I am for getting stuck down there in the first place. I find myself pulling up, up and out.
I stand alone at the top of the well and look back down at where I have been for the last few days. And I say a quick prayer that I don't make a wrong turn like that again. I am not naive enough to think it may not happen again, or that I won't encounter other dangerous pitfalls but one thing is abundantly clear..I do have a guide, a teacher in the most unexpected form..for she is only 2 years old. Yet despite her youth and tiny size, she guides me so easily and gently, as if she has done this a million times before. She leaves me with no doubt that she is willing to do it a million more. Her love is unconditional and all she needs to do is smile and wrap her small arms around my neck. And for that moment, the next few steps light up in front of me. Not the whole path, because if I am learning nothing else, it is to go slow, take in all that is around me. Marvel at the beauty, one moment, one step at a time.
Saturday, August 20, 2011
Days go by....
Been away too long.. seems like forever since I have sat down and posted about Bella's journey. Thinking about it I realize that we are settling in to this life. That somehow with the passing of time we are beginning our road towards acceptance. I say beginning our road, because I am not sure if I will ever "accept" this hand we have been dealt. But as time passes from those horrible first days, our family has begun a routine of daily life. Its amazing how the human mind pushes on.. even on those days you don't want to get out of bed.
A sense of "normalcy" has settled over our home. Not necessarily everyone else's "normal". But our normal. Bella continues to be well and is happy most of the time. We continue to see great strides in her progress. Her happiness always makes the days easy to take. She currently has physical therapy twice a week and Early Intervention once a week. We are waiting on an appointment with the Communication/Speech Therapy coordinator at Children's Hospital. In the meantime we continue with learning/teaching Bella simple sign language so she can communicate. She has really mastered the "more" sign and is using it appropriately! Especially when she wants more food! Her appetite continues to soar..she continues to gain weight and is filling out a lot. She has the most beautiful round face and though I never thought I would say this, her legs actually look chunky! It is very apparent that she is becoming stronger. She stands (with assistance) for much longer periods of time and is very solid on her feet. And the best part is she smiles while doing it. I feel like she finally has a desire to be mobile.
We have also acquired the "kid walk" which is a walker designed to help her walk on her own. While it is one crazy looking contraption, it is working and bringing Bella a sense of independence she is craving. I will try to post a picture soon.
As time passes it seems that Bella continues to work on her speech. She has become very "vocal" even though most of the time it is babbling. A wonderful thing happened a few days ago.. while playing with Jeff and I, she clearly said "Da Da". I can't tell you the joy those sounds brought to Jeff and I. Those were the first words Bella ever said before her regression and I think we both had a silent fear we may never hear them again. It seems that she is making those important "connections" in her brain that are giving her some "words" back. It gives us such hope.
We have Bella's gastro appointment back up in Boston on September 27th. Bella has good days and bad days with her stomach issues and I will be glad to have her checked out. It would be nice to find out if there is anything we can do to ease that discomfort for her.
Bella's hand use continues to be strong. We caught a biggie tonight actually, she picked up her fork from her tray and put the piece of chicken right in her mouth! We were so proud of her and she just sat there beaming.
As Bella's smile grows bigger each day and we hear her infectious giggle, there are moments of peace, where life seems bearable. She makes me strong, I actually feel it. And I treasure those moments. It makes the tough times easier to bear. And I am not going to lie...there continue to be tough times. I have made peace with the fact that at this moment my daughter does not walk or talk, that each day I have to dispense a bunch of different medications to her, that it is becoming more difficult to carry her as she gains weight, that she grinds her teeth for most of the day, oddly enough, these are part of our "normal"...but what I struggle with are the periods of inconsolable screaming, head banging and displays of frustration that are part of this beast called Retts. Even though I was told by her doctor that this is part of it, that you cannot console her, that she must work through it..it hurts. It hurts to know that as a Mother I can do nothing to soothe my baby. When it happens I just want to wrap her in my arms and whisper in her ear that everything is going to be alright..but if I do (and yes, I have tried) it makes it worse. Its hard to explain as much as it sounds like a normal 2 year old tantrum..its not. If you were to witness it you would know what I mean. Those members of our family who have, feel the same overwhelming helplessness.
Running a close second are the sleep issues. It is a struggle for Bella to quiet her mind and body when its time for bed. So many Retts girls are on medication for sleep and I am so glad we do not have to go that route. But it is hard to deal with.. Bella is clearly tired when we put her to bed yet she has such a tough time going to bed. On a bad night its a good 2-3 hours before she is asleep...on a really good night its no longer than a 1/2 hour. I would say the average night has become 1-1 1/2 hours. I am thankful however that she really has begun to sleep through the night once she is asleep. I would say no more than a handful of times through a month is she waking in the night.
Overall.. we march on. Treasure all the smiles, all the giggles, all the hugs.. and we fight through the rest. And I can truly say we are doing well. We are a happy family for we have the greatest of gifts...given to us by our Bella Angel..the understanding that a smile can heal a broken heart, that a giggle takes away saddness and that a hug is truly a magical thing.
A sense of "normalcy" has settled over our home. Not necessarily everyone else's "normal". But our normal. Bella continues to be well and is happy most of the time. We continue to see great strides in her progress. Her happiness always makes the days easy to take. She currently has physical therapy twice a week and Early Intervention once a week. We are waiting on an appointment with the Communication/Speech Therapy coordinator at Children's Hospital. In the meantime we continue with learning/teaching Bella simple sign language so she can communicate. She has really mastered the "more" sign and is using it appropriately! Especially when she wants more food! Her appetite continues to soar..she continues to gain weight and is filling out a lot. She has the most beautiful round face and though I never thought I would say this, her legs actually look chunky! It is very apparent that she is becoming stronger. She stands (with assistance) for much longer periods of time and is very solid on her feet. And the best part is she smiles while doing it. I feel like she finally has a desire to be mobile.
We have also acquired the "kid walk" which is a walker designed to help her walk on her own. While it is one crazy looking contraption, it is working and bringing Bella a sense of independence she is craving. I will try to post a picture soon.
As time passes it seems that Bella continues to work on her speech. She has become very "vocal" even though most of the time it is babbling. A wonderful thing happened a few days ago.. while playing with Jeff and I, she clearly said "Da Da". I can't tell you the joy those sounds brought to Jeff and I. Those were the first words Bella ever said before her regression and I think we both had a silent fear we may never hear them again. It seems that she is making those important "connections" in her brain that are giving her some "words" back. It gives us such hope.
We have Bella's gastro appointment back up in Boston on September 27th. Bella has good days and bad days with her stomach issues and I will be glad to have her checked out. It would be nice to find out if there is anything we can do to ease that discomfort for her.
Bella's hand use continues to be strong. We caught a biggie tonight actually, she picked up her fork from her tray and put the piece of chicken right in her mouth! We were so proud of her and she just sat there beaming.
As Bella's smile grows bigger each day and we hear her infectious giggle, there are moments of peace, where life seems bearable. She makes me strong, I actually feel it. And I treasure those moments. It makes the tough times easier to bear. And I am not going to lie...there continue to be tough times. I have made peace with the fact that at this moment my daughter does not walk or talk, that each day I have to dispense a bunch of different medications to her, that it is becoming more difficult to carry her as she gains weight, that she grinds her teeth for most of the day, oddly enough, these are part of our "normal"...but what I struggle with are the periods of inconsolable screaming, head banging and displays of frustration that are part of this beast called Retts. Even though I was told by her doctor that this is part of it, that you cannot console her, that she must work through it..it hurts. It hurts to know that as a Mother I can do nothing to soothe my baby. When it happens I just want to wrap her in my arms and whisper in her ear that everything is going to be alright..but if I do (and yes, I have tried) it makes it worse. Its hard to explain as much as it sounds like a normal 2 year old tantrum..its not. If you were to witness it you would know what I mean. Those members of our family who have, feel the same overwhelming helplessness.
Running a close second are the sleep issues. It is a struggle for Bella to quiet her mind and body when its time for bed. So many Retts girls are on medication for sleep and I am so glad we do not have to go that route. But it is hard to deal with.. Bella is clearly tired when we put her to bed yet she has such a tough time going to bed. On a bad night its a good 2-3 hours before she is asleep...on a really good night its no longer than a 1/2 hour. I would say the average night has become 1-1 1/2 hours. I am thankful however that she really has begun to sleep through the night once she is asleep. I would say no more than a handful of times through a month is she waking in the night.
Overall.. we march on. Treasure all the smiles, all the giggles, all the hugs.. and we fight through the rest. And I can truly say we are doing well. We are a happy family for we have the greatest of gifts...given to us by our Bella Angel..the understanding that a smile can heal a broken heart, that a giggle takes away saddness and that a hug is truly a magical thing.
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