It seems too unreal to me that only one month has passed since we heard the worst words ever.."she tested positive". The mind is a beautiful thing because although I know there was tremendous pain and my memory is clear as to what occurred that day, I can't actually feel the severity of it..that particular pain has dulled. So much has happened in four weeks.. I feel 10 years older and whole lot weary. Yet my daughter gives me the strength to get out of bed everyday. Bella has been on her anti-seizure medication a little over a month and I have to believe that all the progress we have seen is attributed to it working. Her little victories give us so much hope. Without hope I don't know what we would do.
In the past 4 weeks I, along with my family and friends, have cried, prayed, laughed, loved, feared, yelled and screamed. So many emotions, so many days of "what's next?". I find that to be the hardest thing right now.. living day in and day out with the "unknown". Sometimes I think it may be a blessing since I can stay in the moment without projecting and dwelling on the bad stuff. Not to say I am really good at that... there are moments when I let that speed train take me to places I really don't want to be. But I am reminded by my husband to stop, get off the train and enjoy each day with Bella in the place we are at right now.
If I am being honest there are days when I am just tired of being positive and I want to just cry with self pity. There are days and moments when I am just plain angry. Why my daughter?? Why my beautiful, sweet, innocent daughter? I want so much for her, I want her to have all the joys that life offers to everyone else's daughter. I don't want her to struggle and feel pain and have to fight overwhelming fights. I dream sometimes that I find her standing up in her crib smiling at me. I dream sometimes of her saying "Hi Mommy!". Faith is such a hard thing. I always felt I had faith and I have always believed things happen for a reason. But I am at a loss with this.. what reason could there be for this? What reason would make sense that my daughter may never walk or talk?
I often feel a tremendous pressure to remain "up" and "Positive" for those around me. It hurts too much to see my family and friends worry and hurt over this. We all have so much to carry that I don't want to be an extra burden to them. So instead, I write these words to release some of it.
I was also reminded yesterday by two very very special women in my life that I can turn to them and say exactly what it is I am feeling. Often hard for me because I don't like asking for help, never my strong suit..most often to my detriment. So I promised them I would reach out on those black days and I am going to work at doing just that.
Ahhh.. ok, enough about me... let's re-cap on my Angel's progress:
Bella has made tremendous progress with physical therapy as we have seen her really making strides with pulling up to her knees, pushing forward with her feet on a little bike, and a new development... she was standing leaning against the couch and she reached down with her hands to the floor and used them to help her sit. She would just kind of plop down and let gravity do its job in the past. My thought is that if she can figure that out, the next step will be the reverse... using her hands to help her UP!
Bella has gained 2lbs since her last doctor visit and that is wonderful news. The more weight she can gain, the stronger she will be. She has this insane appetite lately and I am hoping that it continues. We need a good 6-7 more pounds to get her where she should be. So bring on the meatballs!
Bella's speech still seems to be the slowest progress... but I have read that when children develop they usually work on one thing at a time, like gross motor skills versus speech. So we have seen so much progress with her physically perhaps we just need to be patient with the speech part.
We are making our list of questions for the team in Boston and I invite anyone who has questions after observing Bella to post them to me, or email me etc. I value everyone's opinion and truly believe "It takes a Village".
I know some of you have had trouble posting a comment. What this "free" blog doesn't tell you is that when you get to this site, in order to post a comment, you need to sign in. There is a sign in option up at the top and it requires you to sign in with a "gmail" account. Gmail is free so if you want to post you can simply create a gmail account you can use just for this. Or if you already have a gmail account you can sign in using that email address and your password for gmail. If you simply start typing without signing in, it won't let you post.
Looking back over this month I will tell you one thing... we have some amazing people in our lives. It amazes me the outpouring of love and support we have received. It has become so clear to us how special all of you are that have taken time out of your busy lives to offer your friendship, love and prayers. Your kindness has eased our pain and dried our tears and the gratitude we feel can never be expressed. It is my hope that you will somehow know what it means to us. Bella has given me a special gift.. she has reminded me of something I had started to forget, this world is full of caring and beautiful people.
So I look back at this surreal month and put it behind me, and I look forward to bright, hopeful days. I will take whatever comes, look it in the eye and say "you have no idea who you are messing with.. have you seen the people behind Bella? You haven't got a chance"
Thursday, July 21, 2011
Friday, July 15, 2011
So many Ups and a few downs...
Finally, a moment to write...it feels good. Makes me realize how much writing these words helps me. As much as I want it to be a source for friends and family to follow Bella's journey it is serving a dual purpose...it helps this Mom out..a lot. It amazes me how much has happened in the days following Bella's diagnosis. It has not even been a month and trust me when I tell you, it feels like it has been 10 years. I actually thought about that the other day and really could not comprehend the fact that its only been 3 1/2 weeks.
Well let's get to the UPs... Bella had a wonderful PT appointment in the pool early in the week. Now as you know from reading, Bella has been less than happy during her sessions. But this past week in the pool she was OUR Bella..smiling, happy and doing really well. I laughed and said to her therapist.. "Bill, meet Bella". He jokingly responded "Hi Bella, I'm Bill". Now it may be a fluke, who knows..but it sure was enjoyable.
Bella has consistently been up extended on her knees, pulling up on the couch and coffee table and window sills. She reaches for things out of her reach and makes a real effort at it. I am starting to feel like she has the "desire" now. Something she seemed not to have before.
Now here is the big ONE, so get ready... we had bought Zackary a mini ball pit (inflatable) like the ones at arcades, for his birthday. So Bella was sitting in it and started to try to get out.. she wanted a book that was on the floor outside of the ball pit. She got up on her knees and started stretching for the book, which was quickly pushed a bit further out of her reach by a very smart Miss Jen..so Bella kept trying and trying. First getting one leg up on the rim and wiggling. The poor Angel tried for about 10 minutes but DID NOT GIVE UP until she got both legs up on the rim and shimmied out!!!! Now the physical aspect of that is huge no doubt, but for me, what really got me was that she didn't give up. She was not content to stay in a place she did not want to be. In the past she would have given up and just sat there until someone got her out. This was a very MOMENTOUS occasion and something HUGE to celebrate! Another big leap for our girl.
Now as if that was not enough for one day.. she also accomplished another big feat.. she drank from a tiny straw in a juice box. Bella, like many Retts girls, has had a very difficult time with chewing, swallowing, and sucking. She was so proud and happy when she got the juice out. That sure was a lot for one day!!
Its these successes that keep us going. Because to be honest, its not always all "good stuff". There are so many worries, on a daily basis. Very shortly after she started her medicine she had stopped grinding her teeth but over this week it has started up again. In addition she has started to hit herself by very quickly hitting her hand to her forehead. When I see her do it, my heart breaks... is she doing it out of frustration? Is it an uncontrollable reflex? Does she do it because she has a pain in her head? It is scaring me and I am anxious to talk to her doctor about it.
We are still at a standstill with her speech. Not much change. She will make sounds every now and then but no solid words. I am desperate to hear her say something, anything. Its probably selfish but I long to hear her say "I love you Mommy". For now however, her laugh is is the BEST medicine.
She had a tough week with her stomach..she had a few days where I could tell that she was very uncomfortable and had a belly ache. She gets very frustrated when she does not feel well because she is smart enough to know whats wrong but cannot tell me. See, that is the difference between an infant not talking and Bella not talking.. she knows. She will often throw her head down in her lap or against me in exhaustion from what I think is trying to communicate what is bothering her. It kills me. I keep trying to reassure her that we will find a way to communicate but I don't know if she believes me.. LOL!!
Bedtime is still a bit of a struggle with Bella fighting sleep for at least a few hours, but she seems to be getting to sleep a bit quicker than in the past.
We received a telephone call today from Children's Hospital in Boston, their Retts Department and Bella has an appointment in three weeks! She will be seen by the doctor doing the research that is on the edge of a breakthrough to having the cure! We are so anxious to have her seen there and to see what else we can be doing for her. This center is cutting edge and one of the best in the nation and we are so blessed to have it in our backyard. So I am logging all my questions and hopefully will have some guidance soon. The center has doctors that specialize in all of the issues above, gastro for her belly, sleep, speech, etc etc.. I wish the appointment was tomorrow.
But for now, its Friday night, my babies are quiet and I am going to spend time with the most wonderful husband a woman could ever have. Thanks for reading and please, if I may ask, keep the prayers coming.
I would love to find ways to help her sleep
Well let's get to the UPs... Bella had a wonderful PT appointment in the pool early in the week. Now as you know from reading, Bella has been less than happy during her sessions. But this past week in the pool she was OUR Bella..smiling, happy and doing really well. I laughed and said to her therapist.. "Bill, meet Bella". He jokingly responded "Hi Bella, I'm Bill". Now it may be a fluke, who knows..but it sure was enjoyable.
Bella has consistently been up extended on her knees, pulling up on the couch and coffee table and window sills. She reaches for things out of her reach and makes a real effort at it. I am starting to feel like she has the "desire" now. Something she seemed not to have before.
Now here is the big ONE, so get ready... we had bought Zackary a mini ball pit (inflatable) like the ones at arcades, for his birthday. So Bella was sitting in it and started to try to get out.. she wanted a book that was on the floor outside of the ball pit. She got up on her knees and started stretching for the book, which was quickly pushed a bit further out of her reach by a very smart Miss Jen..so Bella kept trying and trying. First getting one leg up on the rim and wiggling. The poor Angel tried for about 10 minutes but DID NOT GIVE UP until she got both legs up on the rim and shimmied out!!!! Now the physical aspect of that is huge no doubt, but for me, what really got me was that she didn't give up. She was not content to stay in a place she did not want to be. In the past she would have given up and just sat there until someone got her out. This was a very MOMENTOUS occasion and something HUGE to celebrate! Another big leap for our girl.
Now as if that was not enough for one day.. she also accomplished another big feat.. she drank from a tiny straw in a juice box. Bella, like many Retts girls, has had a very difficult time with chewing, swallowing, and sucking. She was so proud and happy when she got the juice out. That sure was a lot for one day!!
Its these successes that keep us going. Because to be honest, its not always all "good stuff". There are so many worries, on a daily basis. Very shortly after she started her medicine she had stopped grinding her teeth but over this week it has started up again. In addition she has started to hit herself by very quickly hitting her hand to her forehead. When I see her do it, my heart breaks... is she doing it out of frustration? Is it an uncontrollable reflex? Does she do it because she has a pain in her head? It is scaring me and I am anxious to talk to her doctor about it.
We are still at a standstill with her speech. Not much change. She will make sounds every now and then but no solid words. I am desperate to hear her say something, anything. Its probably selfish but I long to hear her say "I love you Mommy". For now however, her laugh is is the BEST medicine.
She had a tough week with her stomach..she had a few days where I could tell that she was very uncomfortable and had a belly ache. She gets very frustrated when she does not feel well because she is smart enough to know whats wrong but cannot tell me. See, that is the difference between an infant not talking and Bella not talking.. she knows. She will often throw her head down in her lap or against me in exhaustion from what I think is trying to communicate what is bothering her. It kills me. I keep trying to reassure her that we will find a way to communicate but I don't know if she believes me.. LOL!!
Bedtime is still a bit of a struggle with Bella fighting sleep for at least a few hours, but she seems to be getting to sleep a bit quicker than in the past.
We received a telephone call today from Children's Hospital in Boston, their Retts Department and Bella has an appointment in three weeks! She will be seen by the doctor doing the research that is on the edge of a breakthrough to having the cure! We are so anxious to have her seen there and to see what else we can be doing for her. This center is cutting edge and one of the best in the nation and we are so blessed to have it in our backyard. So I am logging all my questions and hopefully will have some guidance soon. The center has doctors that specialize in all of the issues above, gastro for her belly, sleep, speech, etc etc.. I wish the appointment was tomorrow.
But for now, its Friday night, my babies are quiet and I am going to spend time with the most wonderful husband a woman could ever have. Thanks for reading and please, if I may ask, keep the prayers coming.
I would love to find ways to help her sleep
Sunday, July 10, 2011
Making Friends....
I believe that today was a perfect 10 beach day. We packed up the kids, (we seem to be getting pretty good at our beach routine) and were out the door and on the beach by 11am. Miss Bella was very animated today, much different than yesterday when she seemed more quiet and a bit more of an observer rather than a participant. Today Bella was very interactive and very much on the move.. literally. She was up on her knees, using the Dig-It Beach Umbrella (best beach umbrella in the world.. google it) for support. She had one hand on the umbrella pole and pulled herself up so she was fully extended on her knees...and here is the best part she was ALL smiles and oh so proud of herself. Then with Daddy's help she stood holding the back of a beach chair and bounced and danced to Poppi's IPOD. Again, all smiles. It was the first time I could see the desire in her to stand and want to be upright. I felt like maybe something is "clicking" inside and she realizes she can do it and maybe some of her frustration eased.
Its so nice these days at the beach because both Bella and Zack are more independent than they were when they were infants. There are many times when they will just sit together on the blanket under the umbrella and just play. I love to watch them both and especially enjoy watching Bella "play". She is doing a whole lot more of that these days. Today she even took a straw from my ice coffee and waved it around laughing..again, a little thing but she never really "pretended" or played like that.
As I am watching her I see her looking over at our dear friend Donna as she relaxed and read her book, Bella watched Donna and then started to scoot.. a little scoot at a time till she made her way into Donna's lap. This type of interaction is a big accomplishment for Bella.
Then came another biggie.. not far from our spot on the beach were three little girls, probably about 6 or 7 years old, sitting in the sand. I am watching Bella observe these little girls when all of a sudden she is on the move.. scooting over and ultimately crashing their circle! It was just about the cutest thing I have ever seen. I wish I could describe the look on Bella's face.. I don't think I can do it justice. She was just so happy. She showed no fear and went right up to each little girl, even trying to give one girl a kiss and trying to "smell" the flowers on the other's little dress.
Now since these were "older" girls I am not sure if they quite knew what to make of our Bella busting in on their turf..one of the little girls asked me how old she was and I told her 2.. and then in the sweetest of ways she said "Doesn't she talk yet?" Simple, innocent and appropriate question for sure..yet as I stood there and said "No, not yet"...a flood of emotion swelled up and took my breathe away. I held back my tears just long enough to see Bella decide she had had enough and scoot back towards our beach family...home turf.
As I returned to my chair with everyone saying how awesome that was to watch and genuinely sharing in Bella's litle social triumph, the tears came. So I got up and took a quick walk to compose myself.
It was like in that split second my mind flashed forward like a movie reel with frames of future moments like that... it reminded me of a quote I read on another blog by a mother with a Retts Angel.. it said "Before I had my daughter I thought I would have to explain the world to her, now I have to explain my daughter to the world". As happy as I was to see Bella adventuring over to those little girls, I felt instant fear and wanted to protect her. I couldn't bear to see her hurt or left out. I know I am not alone on that as I am sure every mother feels that way..but it just hit me that Bella is going to face some different challenges and I can't bear the world being unkind to her.
So I let the tears fall, briefly, caught my breathe and shook it off. I was reminded by another dear friend that today was a day for celebration...celebrating Bella's accomplishments. Ahh good advice thanks Sharon. So once again I was reminded about how thankful I am for all the love that surrounds Bella..we could not be more lucky. Who else but Bella gets a collective "I love you" in sign language from the most amazing group of people encircling her, protecting her. Another precious moment for me to realize, its going to be okay...its all going to be ok.
Its so nice these days at the beach because both Bella and Zack are more independent than they were when they were infants. There are many times when they will just sit together on the blanket under the umbrella and just play. I love to watch them both and especially enjoy watching Bella "play". She is doing a whole lot more of that these days. Today she even took a straw from my ice coffee and waved it around laughing..again, a little thing but she never really "pretended" or played like that.
As I am watching her I see her looking over at our dear friend Donna as she relaxed and read her book, Bella watched Donna and then started to scoot.. a little scoot at a time till she made her way into Donna's lap. This type of interaction is a big accomplishment for Bella.
Then came another biggie.. not far from our spot on the beach were three little girls, probably about 6 or 7 years old, sitting in the sand. I am watching Bella observe these little girls when all of a sudden she is on the move.. scooting over and ultimately crashing their circle! It was just about the cutest thing I have ever seen. I wish I could describe the look on Bella's face.. I don't think I can do it justice. She was just so happy. She showed no fear and went right up to each little girl, even trying to give one girl a kiss and trying to "smell" the flowers on the other's little dress.
Now since these were "older" girls I am not sure if they quite knew what to make of our Bella busting in on their turf..one of the little girls asked me how old she was and I told her 2.. and then in the sweetest of ways she said "Doesn't she talk yet?" Simple, innocent and appropriate question for sure..yet as I stood there and said "No, not yet"...a flood of emotion swelled up and took my breathe away. I held back my tears just long enough to see Bella decide she had had enough and scoot back towards our beach family...home turf.
As I returned to my chair with everyone saying how awesome that was to watch and genuinely sharing in Bella's litle social triumph, the tears came. So I got up and took a quick walk to compose myself.
It was like in that split second my mind flashed forward like a movie reel with frames of future moments like that... it reminded me of a quote I read on another blog by a mother with a Retts Angel.. it said "Before I had my daughter I thought I would have to explain the world to her, now I have to explain my daughter to the world". As happy as I was to see Bella adventuring over to those little girls, I felt instant fear and wanted to protect her. I couldn't bear to see her hurt or left out. I know I am not alone on that as I am sure every mother feels that way..but it just hit me that Bella is going to face some different challenges and I can't bear the world being unkind to her.
So I let the tears fall, briefly, caught my breathe and shook it off. I was reminded by another dear friend that today was a day for celebration...celebrating Bella's accomplishments. Ahh good advice thanks Sharon. So once again I was reminded about how thankful I am for all the love that surrounds Bella..we could not be more lucky. Who else but Bella gets a collective "I love you" in sign language from the most amazing group of people encircling her, protecting her. Another precious moment for me to realize, its going to be okay...its all going to be ok.
Saturday, July 9, 2011
Another Week Over
I don't know about anyone else but these weeks seem to be flying by...in a blur for me. Each week is similar to the last, physical therapy twice a week, Early Intervention once a week and much awaited beach days on the weekend. Each day is filled with juggling work, appointments and reminding myself to breathe. Sometimes it is overwhelming and I find that the day has gone and I haven't eaten lunch or stopped running until bedtime. This isn't much different than anyone else's schedule I know and I am sure I am not alone when I just don't know how to get it all under control and organized.
Bella is my priority yet I have another child, a business and a household to keep up. I want to be the best at each of those but the reality is, I fall short. Sometimes at work I look at the things I need to complete and I just feel like it is so unimportant in comparison to the needs of my daughter but that is not entirely the case, lets face it, unless I become independently wealthy (unlikely since I don't even buy lottery tickets) I have to work along side my very hardworking husband, and I have to be successful at it to provide the things I want my children to have.
I also want to be at Bella's appointments. I have so many offers of help where people will offer to take Bella to physical therapy so I don't have to leave work, but I just can't do that. I need to be there with her, I need to go through each and every thing I expect my 2 year old angel to go through. I don't want her looking around asking "where is my mom?" And let me tell you physical therapy appointments are NO FUN.. Bella dislikes it, no, let's call it like it is... Bella HATES it. As soon as she gets in the building she starts to cry. And as soon as she starts her session she screams, and screams and yup... screams until its over. Her therapist believes she is frustrated, which I do agree with but I want so much for her to use these sessions to the fullest, I feel her fighting it is going to set her back. Its a constant feeling of "beat the clock" for me, like there is no time to waste. She is making progress but it is slow.. almost painfully slow. We have been told she is getting stronger through her hips and that it takes much less facilitation from her therapist to do some of her "work out".
Upon the suggestion of a family friend I asked her therapist about the possibility of a "walker". Bella is too big for the baby walkers they sell in the stores but I was told of a piece of equipment called "Kid Walk". It is a medical device that is used by kids who aren't walking due to a medical condition. Bella's therapist is going to get one in and we are going to try her in it.. I am hoping it will be something she likes. I would love for her to get the feeling of independently "walking" and moving around. I think she is tired of sitting, I know I would be. Her therapist also believes her frustration comes from the inability to communicate to him how she is feeling during her session. I can understand that..so he is going to consult with some speech/communication colleagues to find some ways to communicate with Bella. Perhaps picture boards which she can point or tap to show him what it is that is going on with her.
Early Intervention went better this week, she was very interactive and did a lot imitating sounds and actions (patting, some sign language). I still feel like there should be something more substantial with her speech therapy and I am not sure I am all that satisfied on that front. I am anxious to go to Boston to see what else is out there. I just feel like currently they really aren't doing much more than we already do as her parents and family.
Speaking of Boston, I called the center and had to leave a message, that was Thursday, didn't hear back Friday so I will call everyday next week until I get someone so we can get an appointment. I have a feeling that it is not going to be that easy or quick to get in there.
I have a lot of high hopes for Boston, maybe too high. I know there is no miracle cure right now but I just feel like we will get more progress with what they offer.. who knows?
We had another wonderful day at the beach today. Bella and Zack had a ball, as usual. Bella ate ALL day. That is something else we have noticed a change in.. her appetite is wonderful. She rarely says no to food and I truly believe she has gained some decent weight. She even has "chunky" little thighs.
She has also been very happy.. very, very smiley and that warms my heart. When she was going through what I believe was her "regression" period.. it was so awful, there was such a void when you looked at her or tried to interact with her. I am so thankful that period is over..for better or worse..she is our happy little ray of sunshine again. And for that I am grateful.
We still have our sleep issues... as I write she is up in her crib fussing and fighting sleep. I need to ask the doctors about that for sure..that is something I really want to get a handle on. She so needs her rest so she can stay strong and fight through whatever is in front of her.
So another week is over and another one is ahead.. that is the way of things. So I take a deep breathe and push on forward.. one day at at time.
Bella is my priority yet I have another child, a business and a household to keep up. I want to be the best at each of those but the reality is, I fall short. Sometimes at work I look at the things I need to complete and I just feel like it is so unimportant in comparison to the needs of my daughter but that is not entirely the case, lets face it, unless I become independently wealthy (unlikely since I don't even buy lottery tickets) I have to work along side my very hardworking husband, and I have to be successful at it to provide the things I want my children to have.
I also want to be at Bella's appointments. I have so many offers of help where people will offer to take Bella to physical therapy so I don't have to leave work, but I just can't do that. I need to be there with her, I need to go through each and every thing I expect my 2 year old angel to go through. I don't want her looking around asking "where is my mom?" And let me tell you physical therapy appointments are NO FUN.. Bella dislikes it, no, let's call it like it is... Bella HATES it. As soon as she gets in the building she starts to cry. And as soon as she starts her session she screams, and screams and yup... screams until its over. Her therapist believes she is frustrated, which I do agree with but I want so much for her to use these sessions to the fullest, I feel her fighting it is going to set her back. Its a constant feeling of "beat the clock" for me, like there is no time to waste. She is making progress but it is slow.. almost painfully slow. We have been told she is getting stronger through her hips and that it takes much less facilitation from her therapist to do some of her "work out".
Upon the suggestion of a family friend I asked her therapist about the possibility of a "walker". Bella is too big for the baby walkers they sell in the stores but I was told of a piece of equipment called "Kid Walk". It is a medical device that is used by kids who aren't walking due to a medical condition. Bella's therapist is going to get one in and we are going to try her in it.. I am hoping it will be something she likes. I would love for her to get the feeling of independently "walking" and moving around. I think she is tired of sitting, I know I would be. Her therapist also believes her frustration comes from the inability to communicate to him how she is feeling during her session. I can understand that..so he is going to consult with some speech/communication colleagues to find some ways to communicate with Bella. Perhaps picture boards which she can point or tap to show him what it is that is going on with her.
Early Intervention went better this week, she was very interactive and did a lot imitating sounds and actions (patting, some sign language). I still feel like there should be something more substantial with her speech therapy and I am not sure I am all that satisfied on that front. I am anxious to go to Boston to see what else is out there. I just feel like currently they really aren't doing much more than we already do as her parents and family.
Speaking of Boston, I called the center and had to leave a message, that was Thursday, didn't hear back Friday so I will call everyday next week until I get someone so we can get an appointment. I have a feeling that it is not going to be that easy or quick to get in there.
I have a lot of high hopes for Boston, maybe too high. I know there is no miracle cure right now but I just feel like we will get more progress with what they offer.. who knows?
We had another wonderful day at the beach today. Bella and Zack had a ball, as usual. Bella ate ALL day. That is something else we have noticed a change in.. her appetite is wonderful. She rarely says no to food and I truly believe she has gained some decent weight. She even has "chunky" little thighs.
She has also been very happy.. very, very smiley and that warms my heart. When she was going through what I believe was her "regression" period.. it was so awful, there was such a void when you looked at her or tried to interact with her. I am so thankful that period is over..for better or worse..she is our happy little ray of sunshine again. And for that I am grateful.
We still have our sleep issues... as I write she is up in her crib fussing and fighting sleep. I need to ask the doctors about that for sure..that is something I really want to get a handle on. She so needs her rest so she can stay strong and fight through whatever is in front of her.
So another week is over and another one is ahead.. that is the way of things. So I take a deep breathe and push on forward.. one day at at time.
Tuesday, July 5, 2011
Bella and the Beach
Before Bella was born, Jeff and I had a plan that our children were going to join our life and all the things we loved in it! Although we were somewhat naive about how our schedule would not budge and our children would simply fall in without protest, we have done our darndest to stick to it. Bella was born on June 18th and was on the beach at Bonnet Shores within a week of us bringing her home. She was such a good, calm baby that she actually did fall right into our long, lazy days at the beach. But don't worry, Zackary has snapped us back into reality!
Little did we know that being a docile, calm baby would later fit as a symptom of Retts Syndrome.
But I digress...from those first days up to yesterday, the beach has been Bella's favorite place. She absolutely loves being there. Whether it's the warm salt air or calming ocean noise, the beach does something magical to Bella.
It never seems to fail, as soon as we pull into the parking lot and unbuckle her out of her car seat, it's an instant smile. Yesterday we actually set a record and got out of the house at 9:30 and set our toes in the sand shortly after 10am! I kid you not, Bella left the beach after 5pm!
As I have previously written about, we have seen precious moments of progress with Bella, which has given us all such hope. While only on her medication for three weeks the progress we have seen is remarkable to us. Of course the hazard with this is me expecting the medication to be like some kind of magical light switch that when flipped will have my Bella walking miles and quoting Shakespeare. It is once again a lesson for me in patience and taking one day at a time....because, it just doesn't work that way. I have felt a slow down in the progress over the last few days, Bella was quiet again, perhaps if only from my somewhat warped perspective. And of course my nerves went into overdrive...was this it? Will the medicine not work? Fear set in and grabbed me around the neck.
But then, yesterday, with the sun shining so bright, Miss Bella surprised me once again...while sitting with Poppi, her bum on the beach chair and legs dangling onto the sand, Bella started kicking the sand up with her feet! Now I know it may be hard to understand the "hugeness" of that simple move...but for us to see that from Bella, it nearly made me cry.
And she didn't stop there...Bella has always had a hard time biting and chewing food and would instead put a much too large piece of food in her mouth. This was another warning sign to me that she just couldn't master that skill. So I have been paranoid with not giving her whole crackers, pieces of bread etc. One of Bella's favorite snacks are Veggie sticks...I have given them to her in pieces as she was not able to eat the whole stick properly without the risk of choking. Well yesterday, right before my eyes, Bella took a whole veggie stick, bit it into a bite size and continued until it was gone!!! I nearly passed out with happiness. I truly can't and wish I could explain what seeing that is like. And then to top it off, she took the veggie stick, snapped it in half and put ONE of the pieces in her mouth. Forget fireworks, that was the sight to see for me this Fourth of July.
And once again, I am reminded that it's the little things, the almost unnoticeable things, that matter most in this life, not just with our Bella, but with everything around us. Thank you Bella, for that gift, among the countless others you give me daily.
Little did we know that being a docile, calm baby would later fit as a symptom of Retts Syndrome.
But I digress...from those first days up to yesterday, the beach has been Bella's favorite place. She absolutely loves being there. Whether it's the warm salt air or calming ocean noise, the beach does something magical to Bella.
It never seems to fail, as soon as we pull into the parking lot and unbuckle her out of her car seat, it's an instant smile. Yesterday we actually set a record and got out of the house at 9:30 and set our toes in the sand shortly after 10am! I kid you not, Bella left the beach after 5pm!
As I have previously written about, we have seen precious moments of progress with Bella, which has given us all such hope. While only on her medication for three weeks the progress we have seen is remarkable to us. Of course the hazard with this is me expecting the medication to be like some kind of magical light switch that when flipped will have my Bella walking miles and quoting Shakespeare. It is once again a lesson for me in patience and taking one day at a time....because, it just doesn't work that way. I have felt a slow down in the progress over the last few days, Bella was quiet again, perhaps if only from my somewhat warped perspective. And of course my nerves went into overdrive...was this it? Will the medicine not work? Fear set in and grabbed me around the neck.
But then, yesterday, with the sun shining so bright, Miss Bella surprised me once again...while sitting with Poppi, her bum on the beach chair and legs dangling onto the sand, Bella started kicking the sand up with her feet! Now I know it may be hard to understand the "hugeness" of that simple move...but for us to see that from Bella, it nearly made me cry.
And she didn't stop there...Bella has always had a hard time biting and chewing food and would instead put a much too large piece of food in her mouth. This was another warning sign to me that she just couldn't master that skill. So I have been paranoid with not giving her whole crackers, pieces of bread etc. One of Bella's favorite snacks are Veggie sticks...I have given them to her in pieces as she was not able to eat the whole stick properly without the risk of choking. Well yesterday, right before my eyes, Bella took a whole veggie stick, bit it into a bite size and continued until it was gone!!! I nearly passed out with happiness. I truly can't and wish I could explain what seeing that is like. And then to top it off, she took the veggie stick, snapped it in half and put ONE of the pieces in her mouth. Forget fireworks, that was the sight to see for me this Fourth of July.
And once again, I am reminded that it's the little things, the almost unnoticeable things, that matter most in this life, not just with our Bella, but with everything around us. Thank you Bella, for that gift, among the countless others you give me daily.
Sunday, July 3, 2011
Fourth of July and Beyond
Well here it is July 4th weekend already. It constantly amazes me how time is flying. We had a wonderful birthday celebration for Zackary's 1st Birthday yesterday! My wonderful husband shared his birthday with Zack as well as Jeff's Uncle Joe...so we weren't in short supply for reasons to enjoy the day.
Bella had taken a great nap right before the party started which was so lucky since I was worried how she would do with lack of sleep. Lately I notice Bella's apprehension with larger crowds. While I believe she loves being around people I am seeing her get nervous and overwhelmed by a lot of stimulation. She will get quiet and I notice her clasping her hands more. Yet when she is in a smaller crowd she will interact more and relax. Now here is the kicker...this could very well be normal 2 year old behavior, but this is what is so hard for us...how do we know the difference?? So I tend to be cautious...maybe if we weren't faced with this challenge I would push her more, but I find myself in protection mode with her.
One of the many great moments of the day came when Zackary was given his piece of birthday cake...we all waited for the wild destruction of that yummy cake by our son..not so much..apparently Zacky is not too fond of getting his hands dirty!! BUT guess who stole the show???!! Our Bella!!!!! She proceeded to finger paint with Zack's piece of cake and had a ball and those moments are priceless!
So what's next on Bella's journey?? We have an MRI scheduled for July 25th. We are not looking forward to having her sedated but our neurologist needs to get this test checked off the list.
We have also decided that we are going to take Bella to Boston's Children's Hospital to be seen by their Retts Department...more on that to follow as we get more details.
Wishing everyone a safe and Happy Fourth.
Bella had taken a great nap right before the party started which was so lucky since I was worried how she would do with lack of sleep. Lately I notice Bella's apprehension with larger crowds. While I believe she loves being around people I am seeing her get nervous and overwhelmed by a lot of stimulation. She will get quiet and I notice her clasping her hands more. Yet when she is in a smaller crowd she will interact more and relax. Now here is the kicker...this could very well be normal 2 year old behavior, but this is what is so hard for us...how do we know the difference?? So I tend to be cautious...maybe if we weren't faced with this challenge I would push her more, but I find myself in protection mode with her.
One of the many great moments of the day came when Zackary was given his piece of birthday cake...we all waited for the wild destruction of that yummy cake by our son..not so much..apparently Zacky is not too fond of getting his hands dirty!! BUT guess who stole the show???!! Our Bella!!!!! She proceeded to finger paint with Zack's piece of cake and had a ball and those moments are priceless!
So what's next on Bella's journey?? We have an MRI scheduled for July 25th. We are not looking forward to having her sedated but our neurologist needs to get this test checked off the list.
We have also decided that we are going to take Bella to Boston's Children's Hospital to be seen by their Retts Department...more on that to follow as we get more details.
Wishing everyone a safe and Happy Fourth.
Friday, July 1, 2011
Early Intervention
It's been a few days since I have written..been a busy few days. We now have a ONE year old toddling around our house..Zackary's birthday was June 30th and we are getting ready for his birthday celebration tomorrow! Bella has been enjoying the festivities and I know she will be all smiles tomorrow with all her family and friends around her. We are so looking forward to being surrounded by those we love and who have been so supportive. It will be a welcome distraction from our tough days and worry.
Now an update on our Angel... Bella had a session with her Early Intervention therapist, Ann. As soon as Ann walked in the door Bella looked at me with apprehension and began to cry. It amazes me how she only met Ann once or twice before but knows that she is not simply a visitor there to hang out but that she is there to make Miss Bella work! I started to worry this would be much like her PT sessions where she screams in protest the whole time. Fortunately Ann had some fun books which caught Bella's attention. She settled down and began to interact nicely with Ann. Ann is working with Bella on communication and spent the session trying to get her to mimic sounds, and physical movements such as patting and even worked on some sign language for "more" "all done" and "thank you". Bella responded well and sounded out "pa" for pat and did the sign for "more".
We will continue to work on those between sessions as it will ease some of our mutual frustration. I am hopeful about these sessions and pray for more ways to learn to help our baby girl.
It's been a tough week for Bella and sleep which comes with Rett Syndrome territory. Each night this week it seems Bella has been incredibly irritable and inconsolable around bedtime. So we go off to bed which seems to make her happy...but very shortly thereafter she is up...first crying, then screaming, then playing. Last night this went on from 7pm to 1:30am. I have tried everything...milk, music, letting her work it out...nothing helps and now I somewhat dread bedtime. I just know how she needs her rest to be strong and I fear she isn't getting enough. She wouldn't even nap today after that late night. I have read many similar stories with other Retts Angels and I am afraid we may be in for this for a while. Something to discuss for sure next doctor visit.
Other than that we are plugging along, taking one day at a time, loving our daughter and son more than life itself and praying.
Now an update on our Angel... Bella had a session with her Early Intervention therapist, Ann. As soon as Ann walked in the door Bella looked at me with apprehension and began to cry. It amazes me how she only met Ann once or twice before but knows that she is not simply a visitor there to hang out but that she is there to make Miss Bella work! I started to worry this would be much like her PT sessions where she screams in protest the whole time. Fortunately Ann had some fun books which caught Bella's attention. She settled down and began to interact nicely with Ann. Ann is working with Bella on communication and spent the session trying to get her to mimic sounds, and physical movements such as patting and even worked on some sign language for "more" "all done" and "thank you". Bella responded well and sounded out "pa" for pat and did the sign for "more".
We will continue to work on those between sessions as it will ease some of our mutual frustration. I am hopeful about these sessions and pray for more ways to learn to help our baby girl.
It's been a tough week for Bella and sleep which comes with Rett Syndrome territory. Each night this week it seems Bella has been incredibly irritable and inconsolable around bedtime. So we go off to bed which seems to make her happy...but very shortly thereafter she is up...first crying, then screaming, then playing. Last night this went on from 7pm to 1:30am. I have tried everything...milk, music, letting her work it out...nothing helps and now I somewhat dread bedtime. I just know how she needs her rest to be strong and I fear she isn't getting enough. She wouldn't even nap today after that late night. I have read many similar stories with other Retts Angels and I am afraid we may be in for this for a while. Something to discuss for sure next doctor visit.
Other than that we are plugging along, taking one day at a time, loving our daughter and son more than life itself and praying.
Subscribe to:
Posts (Atom)