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.
Monday, October 3, 2011
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.
Friday, August 5, 2011
"Unknown Clinical Significance" - Now Known...
Bella had her first taste of the Big City yesterday and I would say she quite liked it. It was a beautiful day to be out on the city streets and boy did everyone take advantage of that. I think Bella was amazed at all the people.. she is a little country girl after all, but she sure had a twinkle in her eye with all the hustle and bustle.
It was a long, information filled, and tiring day.. I know so many of you were waiting on news but we were all very beat and I just didn't want to rush a post and not give all the information we received. So here it is.....hope you have a minute or two...
We have our answers, we have our diagnosis... Bella has Rett Syndrome, no question, no doubt.
So, finally we understand that although her variant on R133h of the MECP2 gene is rare... it is in fact Rett Syndrome. I guess we always knew that was the most likely outcome, but I think there was always this sliver of hope in the back of our minds.. even if it was the way back.. that this was something "else" and Bella would just outgrow it. When we were originally told her variant was of "unknown clinical significance" and the doctors we had seen weren't ready to say 100% that it was Retts, it gave us this life raft to hold onto.. even with her (what has always seemed to me.. clear symptoms and behaviors of Retts), I think we all tried to keep a finger on that life raft. So it was sort of a "second blow". Not quite as hard of a sucker punch as the first one..but a pretty good jab just the same.
Without a doubt, we saw the leading expert in the field of Retts... he was absolutely unbelievable. We left with ALL and I mean, all, of our questions answered. Specifically, here is what we learned:
1. In categorizing girls with Retts, they use "mild, moderate and severe". Bella is mildly effected by the disease;
2. It is likely that Bella has a form of Retts where more of the healthy "X" chromosomes are turned on rather than more of the "affected X" chromosomes ;
3. The doctor states Bella is in extremely good health for a girl with Retts;
4. He feels that Bella WILL most likely walk!! Although it will take time, and lots of it;
5. We have seen the worst of her regression! She has NOT lost functional use of her hands which is such a blessing!
6. The likelihood of Bella speaking is somewhat less optimistic.. if she does regain speech she will most likely only say a few phrases; However she can learn other forms of communication such as sign language.
7. Bella can go to school.. what kind of school and where will be determined as we go along.
8. Bella most likely has acid reflux and will need medication and monitoring from a gastroenterologist.
9. Bella has been put on some super duper vitamins and supplements, including Q10 to build up her muscles to help her walk;
10. There is no guarantee that Bella will not have seizures in the future. 60% of Retts Girls have at least 1 seizure between the ages of 1-6. However, Bella is already on anti-seizure medication which will continue to be monitored and she will continue to have EEG's to make sure we stay on top of it. Seizures are the most dangerous for hurting Bella's progress and we must be diligent with this.
11. All of her current behaviors and symptoms are in fact related to Retts, from the constant rubbing of her nose, to her teeth grinding, to her hitting herself, to her mouthing toys and objects, to her hand gestures, to her sleep issues, it is all related. And the bright spot.. some of them should subside over time.
12. Bella and girls with Retts have sensory issues where overstimulation bothers them.. for example, with Bella.. she loves being with people, however, loud sudden noises from a large crowd causes her anxiety.. explains why she cries whenever "Happy Birthday" is sung with clapping at the end! Doctor said we would learn Bella's cues and either avoid those situations that cause extreme anxiety or just remove her momentarily.
13. Girls with Retts often have heart related health issues. Bella was given an EKG yesterday and will have to have one yearly to monitor her.
14. Girls with Retts have VERY GOOD receptive language, which means, Bella UNDERSTANDS everything that is said to her. Retts does not effect intelligence;
15. Life expectancy for a girl with Retts is getting better, with women living to middle age. The key is for them to remain healthy, no seizures, no heart issues etc...good medical care is essential.
While that is pretty much all of it, in a nutshell, I have saved the BIGGEST AND MOST HOPEFUL NEWS FOR LAST.... THEY ARE CLOSE AND I MEAN CLOSE TO A CURE!!!!!!!!!!!!
The doctor we saw is leading the research and told us that Bella is young and that is so wonderful because they are so close to finding a cure which REVERSES Retts. This would mean that once they have the cure, Bella would resume a normal healthy development with walking and talking and running and dates, and proms and sports and college and weddings etc etc etc....
They just need one thing.... money. They need money to fund the trials, the need money to develop the drug (which they have and have used to reverse the symptoms in mice)... they just need the funding. The doctor was confident that within Bella's lifetime they should have the cure... its just a matter of when. Obviously I would like that to be tomorrow... but to know its out there and a possibility... looks like someone turned that lifeboat around and sent it back our way.
We received the BEST possible news we could have yesterday, within the world of Retts. I guess that it still was hard to swallow because I don't want to be in the world of Retts, I don't want my daughter within the world of Retts. But reality being what it is... I can't change that. Bella has some significant challenges ahead of her, that is for certain. All of us who love her do. But as my husband says.. "we have her, we have her here everyday with us." And as I watch her every day, smiling and giggling and just bringing joy by being in the room.. I think this little girl is going to surprise us. I do know her father and I will do whatever we have to, we will walk to the end of this earth and back to make sure she has the best care and all she needs to meet every challenge. We have our mission now, we know our path, we know the name of what stands in our daughter's way and I will tell you.. we are ready to kick its ass.
It was a long, information filled, and tiring day.. I know so many of you were waiting on news but we were all very beat and I just didn't want to rush a post and not give all the information we received. So here it is.....hope you have a minute or two...
We have our answers, we have our diagnosis... Bella has Rett Syndrome, no question, no doubt.
So, finally we understand that although her variant on R133h of the MECP2 gene is rare... it is in fact Rett Syndrome. I guess we always knew that was the most likely outcome, but I think there was always this sliver of hope in the back of our minds.. even if it was the way back.. that this was something "else" and Bella would just outgrow it. When we were originally told her variant was of "unknown clinical significance" and the doctors we had seen weren't ready to say 100% that it was Retts, it gave us this life raft to hold onto.. even with her (what has always seemed to me.. clear symptoms and behaviors of Retts), I think we all tried to keep a finger on that life raft. So it was sort of a "second blow". Not quite as hard of a sucker punch as the first one..but a pretty good jab just the same.
Without a doubt, we saw the leading expert in the field of Retts... he was absolutely unbelievable. We left with ALL and I mean, all, of our questions answered. Specifically, here is what we learned:
1. In categorizing girls with Retts, they use "mild, moderate and severe". Bella is mildly effected by the disease;
2. It is likely that Bella has a form of Retts where more of the healthy "X" chromosomes are turned on rather than more of the "affected X" chromosomes ;
3. The doctor states Bella is in extremely good health for a girl with Retts;
4. He feels that Bella WILL most likely walk!! Although it will take time, and lots of it;
5. We have seen the worst of her regression! She has NOT lost functional use of her hands which is such a blessing!
6. The likelihood of Bella speaking is somewhat less optimistic.. if she does regain speech she will most likely only say a few phrases; However she can learn other forms of communication such as sign language.
7. Bella can go to school.. what kind of school and where will be determined as we go along.
8. Bella most likely has acid reflux and will need medication and monitoring from a gastroenterologist.
9. Bella has been put on some super duper vitamins and supplements, including Q10 to build up her muscles to help her walk;
10. There is no guarantee that Bella will not have seizures in the future. 60% of Retts Girls have at least 1 seizure between the ages of 1-6. However, Bella is already on anti-seizure medication which will continue to be monitored and she will continue to have EEG's to make sure we stay on top of it. Seizures are the most dangerous for hurting Bella's progress and we must be diligent with this.
11. All of her current behaviors and symptoms are in fact related to Retts, from the constant rubbing of her nose, to her teeth grinding, to her hitting herself, to her mouthing toys and objects, to her hand gestures, to her sleep issues, it is all related. And the bright spot.. some of them should subside over time.
12. Bella and girls with Retts have sensory issues where overstimulation bothers them.. for example, with Bella.. she loves being with people, however, loud sudden noises from a large crowd causes her anxiety.. explains why she cries whenever "Happy Birthday" is sung with clapping at the end! Doctor said we would learn Bella's cues and either avoid those situations that cause extreme anxiety or just remove her momentarily.
13. Girls with Retts often have heart related health issues. Bella was given an EKG yesterday and will have to have one yearly to monitor her.
14. Girls with Retts have VERY GOOD receptive language, which means, Bella UNDERSTANDS everything that is said to her. Retts does not effect intelligence;
15. Life expectancy for a girl with Retts is getting better, with women living to middle age. The key is for them to remain healthy, no seizures, no heart issues etc...good medical care is essential.
While that is pretty much all of it, in a nutshell, I have saved the BIGGEST AND MOST HOPEFUL NEWS FOR LAST.... THEY ARE CLOSE AND I MEAN CLOSE TO A CURE!!!!!!!!!!!!
The doctor we saw is leading the research and told us that Bella is young and that is so wonderful because they are so close to finding a cure which REVERSES Retts. This would mean that once they have the cure, Bella would resume a normal healthy development with walking and talking and running and dates, and proms and sports and college and weddings etc etc etc....
They just need one thing.... money. They need money to fund the trials, the need money to develop the drug (which they have and have used to reverse the symptoms in mice)... they just need the funding. The doctor was confident that within Bella's lifetime they should have the cure... its just a matter of when. Obviously I would like that to be tomorrow... but to know its out there and a possibility... looks like someone turned that lifeboat around and sent it back our way.
We received the BEST possible news we could have yesterday, within the world of Retts. I guess that it still was hard to swallow because I don't want to be in the world of Retts, I don't want my daughter within the world of Retts. But reality being what it is... I can't change that. Bella has some significant challenges ahead of her, that is for certain. All of us who love her do. But as my husband says.. "we have her, we have her here everyday with us." And as I watch her every day, smiling and giggling and just bringing joy by being in the room.. I think this little girl is going to surprise us. I do know her father and I will do whatever we have to, we will walk to the end of this earth and back to make sure she has the best care and all she needs to meet every challenge. We have our mission now, we know our path, we know the name of what stands in our daughter's way and I will tell you.. we are ready to kick its ass.
Sunday, July 31, 2011
Count Down to Boston...
Here it is the end of another week. I find that Sunday nights seem to be the time I collect my thoughts and feelings and recall the experiences that occurred during a particular week in Bella's journey. It is my quiet time to reflect and sometimes purge and it gives me a "re-start" for what's next.
We started the week anxious and nervous over Bella's MRI on Monday and ended the week with an appointment with Bella's neurologist. I am HAPPY to report that Bella's MRI was ruled ALL CLEAR! Yes, a collective SIGH rang through the Rutko family! Bella's doctor opened the door and the first words he said when he looked at Bella were "She looks like a different kid to me". Now he has not seen her since he prescribed her anti-seizure medicine a month and a half ago. He was visibly impressed with her progress so much so that he is staying the course with her current medication and we will re-evaluate it again in November. He seemed very hopeful that her progress could continue since seeing how far she had come in only a month and a half. We walked out of there with smiles on our faces and hope in our hearts.
This week will bring our trip to Children's Hospital in Boston for Bella to be seen by their Retts Center. I have probably mentioned before how anxious I am to go. I have so many questions and am so desperate for guidance and some kind of answers. I am trying to prepare myself however as I often think my expectations are unrealistic as to what they can tell me. But as Jeff and I were talking, it can't be any worse than where we are now, we have no answers now so worse case, if they cannot tell us anything new, its status quo.
Overall, it was a mixed week of highs and lows, which seems to be the course in this journey of ours. The MRI took its toll, not on sweet Bella, who was back to herself that afternoon, but on Mommy. Although I had no negative "gut" feelings, I believe that the worry had lodged itself in the back of my mind. As the week went on and we got closer to Bella's appointment on Friday where we would find out the results, I found myself beginning to fall apart. Probably didn't help that we have some new concerns over some of Bella's recent behaviors..which I will get to. By Wednesday and Thursday I was down right ANGRY... haven't been angry since the first days, but for some reason I was just plain mad. I could not seem to find my way to "positive thinking" for the life of me. I am often tired of being positive.. which is no easy task when your heart is constantly aching.
Bella also had a few rough days which brought up some new cause for concern. She is constantly grinding her teeth and nothing we do seems to stop it. She grinds for most of the day and has episodes of screaming and hitting herself in the head combined with holding her head in her hands. It is very upsetting to watch and most often sends me into a tailspin. I have no idea if something new is hurting her or if perhaps her jaw or head simply hurts from grinding. She is also inconsolable during these periods which is never easy. In addition, she seems to be coughing/gagging a lot more after she eats and when she lays down for bed. I am concerned that she is having acid reflux (which is yet another unfortunate symptom). One night this week she was gagging and coughing so much that she ended up getting sick. I truly believe it was not from anything she ate, but from her trying to get the reflux feeling out.
So you see, this week these things just made me MAD. I fight so hard not to wallow in self pity and I know all the logical reasons for staying positive, but this past week I just didn't have it in me. So I ended up spending two days being angry and wanting to break and throw things. I stopped short of the breaking things but it felt good to say it. In sharing my feelings with my incredible support team, I was able to keep it at two days, that was all I allowed myself and decided it was time to pull myself up and get back to the business of fighting the good fight with my daughter. So I add these concerns to the list for Boston and hope for answers.
Then Friday came and we got such great news at her appointment and such positive feedback from her doctor, it was the momentum we needed. Sometimes being on this crazy roller coaster skews our perspective..it was her doctor saying "look at how much has happened with her progress and its only been a month and a half". It is like the passing of time, since this whole thing started, seems to me to exist in some alternative universe where a day equals a year. So sometimes I forget how much Bella has improved in a short period of time. So it was a good reminder. It is so strange how sometimes it is something so obvious that someone says or points out that has a profound effect on me and provides clarity. Even for a moment.
Clarity and understanding..two of the many things I am hoping this week's appointment in Boston will bring. So we wait..and of course I will write and share all we learn. Please if I may be so bold to ask again, keep Bella in your prayers...I know the medicine is working, but I think it goes a lot further than that.. and I thank all of you.
We started the week anxious and nervous over Bella's MRI on Monday and ended the week with an appointment with Bella's neurologist. I am HAPPY to report that Bella's MRI was ruled ALL CLEAR! Yes, a collective SIGH rang through the Rutko family! Bella's doctor opened the door and the first words he said when he looked at Bella were "She looks like a different kid to me". Now he has not seen her since he prescribed her anti-seizure medicine a month and a half ago. He was visibly impressed with her progress so much so that he is staying the course with her current medication and we will re-evaluate it again in November. He seemed very hopeful that her progress could continue since seeing how far she had come in only a month and a half. We walked out of there with smiles on our faces and hope in our hearts.
This week will bring our trip to Children's Hospital in Boston for Bella to be seen by their Retts Center. I have probably mentioned before how anxious I am to go. I have so many questions and am so desperate for guidance and some kind of answers. I am trying to prepare myself however as I often think my expectations are unrealistic as to what they can tell me. But as Jeff and I were talking, it can't be any worse than where we are now, we have no answers now so worse case, if they cannot tell us anything new, its status quo.
Overall, it was a mixed week of highs and lows, which seems to be the course in this journey of ours. The MRI took its toll, not on sweet Bella, who was back to herself that afternoon, but on Mommy. Although I had no negative "gut" feelings, I believe that the worry had lodged itself in the back of my mind. As the week went on and we got closer to Bella's appointment on Friday where we would find out the results, I found myself beginning to fall apart. Probably didn't help that we have some new concerns over some of Bella's recent behaviors..which I will get to. By Wednesday and Thursday I was down right ANGRY... haven't been angry since the first days, but for some reason I was just plain mad. I could not seem to find my way to "positive thinking" for the life of me. I am often tired of being positive.. which is no easy task when your heart is constantly aching.
Bella also had a few rough days which brought up some new cause for concern. She is constantly grinding her teeth and nothing we do seems to stop it. She grinds for most of the day and has episodes of screaming and hitting herself in the head combined with holding her head in her hands. It is very upsetting to watch and most often sends me into a tailspin. I have no idea if something new is hurting her or if perhaps her jaw or head simply hurts from grinding. She is also inconsolable during these periods which is never easy. In addition, she seems to be coughing/gagging a lot more after she eats and when she lays down for bed. I am concerned that she is having acid reflux (which is yet another unfortunate symptom). One night this week she was gagging and coughing so much that she ended up getting sick. I truly believe it was not from anything she ate, but from her trying to get the reflux feeling out.
So you see, this week these things just made me MAD. I fight so hard not to wallow in self pity and I know all the logical reasons for staying positive, but this past week I just didn't have it in me. So I ended up spending two days being angry and wanting to break and throw things. I stopped short of the breaking things but it felt good to say it. In sharing my feelings with my incredible support team, I was able to keep it at two days, that was all I allowed myself and decided it was time to pull myself up and get back to the business of fighting the good fight with my daughter. So I add these concerns to the list for Boston and hope for answers.
Then Friday came and we got such great news at her appointment and such positive feedback from her doctor, it was the momentum we needed. Sometimes being on this crazy roller coaster skews our perspective..it was her doctor saying "look at how much has happened with her progress and its only been a month and a half". It is like the passing of time, since this whole thing started, seems to me to exist in some alternative universe where a day equals a year. So sometimes I forget how much Bella has improved in a short period of time. So it was a good reminder. It is so strange how sometimes it is something so obvious that someone says or points out that has a profound effect on me and provides clarity. Even for a moment.
Clarity and understanding..two of the many things I am hoping this week's appointment in Boston will bring. So we wait..and of course I will write and share all we learn. Please if I may be so bold to ask again, keep Bella in your prayers...I know the medicine is working, but I think it goes a lot further than that.. and I thank all of you.
Monday, July 25, 2011
MRI Monday....
Today was Bella's MRI at Hasbro's Center for Pediatric Imaging. It was not a day I had been looking forward to. Now having a few MRI's of my own I know it is not a test that is painful or invasive, but thinking about my 2 year old in that big machine was just not pleasant. As you can imagine when an MRI is needed on a child of Bella's age and they need her perfectly still, they need to sedate her to get it done. That is the part that was scaring me. Bella has never been under anesthesia and while the test itself is not risky, anytime you go "under" there are risks associated with it. Bella's neurologist had held off scheduling the MRI for the very reason that unnecessarily sedating a child is not something they like to do. But once her EEG came back abnormal, he felt it necessary to do the MRI to make sure nothing is overlooked and everything is checked out.
So off we went this morning. Bella's appointment was at 8am and she could not eat or drink anything after 7am. I was a bit worried because Miss Bella LIKES her food and when she doesn't have a full belly, well, lets just say she is less than happy. As I figured Bella was not in the greatest of moods while we checked in and got her ready for the test. But in Bella fashion, she was a TROOPER! And the staff at Hasbro was amazing. They have quite the operation and walked us through everything before it happened.
It was interesting to me that the entire staff that was attending to Bella were all first Pediatric Intesive Care personnel before moving over to the imaging department. That was a wonderful comfort to Jeff and I because our thoughts of course were, if anything was to happen, she is in the best place for it to be taken care of. They take such care when sedating a young child like Bella... they monitored her just as they would if she was in surgery. It really was amazing the precautions and steps they took to ensure her safety.
Both Jeff and I wanted to be with her, in the same room during the MRI, so we were screened by the MRI staff to make sure we could be due to the strength of the magnetic field surrounding the machine. Turned out that because Jeff had worked with grinding metal in the past (regardless of how many years ago) they would not let him stay for fear that if a tiny piece had lodged in his eye the magnet could move it. So Jeff was able to stand outside the door while they sedated Bella and had to leave for the test. That was an incredibly hard thing for Jeff to do and I know how badly he wanted to be in there with us. I did not want him to worry anymore than he already was so I put on my "brave face"...I could hold Bella while they put in the IV and put her to sleep. Brave face or not, I was petrified!
Since this ordeal started, Jeff has always been the one to hold Bella for bloodwork, shots etc. Now it was up to me.. I wanted to be strong for Bella and I wanted to be strong for Jeff.
Bella and I went into the MRI room and they sat her on the MRI table. I was told to hold her in a hug in front of her while they put in the IV. I thought ok, I can do this, and I was doing really well. My little Bella was crying so I started to sing her favorite song.. "I love you a bushel and a peck, a bushel and a peck and a hug around the neck"..she calmed a little and the nurses even sang along...too cute. They were able to finally get the IV in, after a little struggle, and the nurse told me the anesthesia was going in...within seconds of her saying that, my daughter went limp in my arms...that was by far the worst feeling in the world. She was fully sedated and they began to get all her monitors hooked up and position her in the MRI machine.
As tears quietly streamed down my face I watched my little precious bundle lay there, still and helpless. She seemed so small. As I sat there and just watched the blanket around her chest move up and down I prayed..I knew she was ok and this was only a minor test, but my prayer was for gratitude. All I could think about were those parents who have very sick children, children in accidents and how they have had to see their children, their babies, no matter their age, on machines breathing for them and so many of them have had to make unthinkable choices. I was so grateful that Jeff and I were not going through that. We have our Bella, here and now, smiles and hugs everyday. I did allow myself the tears, after all, this is my baby, but I did not feel sorry for myself, not at all. I was even a little proud of myself, I was able to be strong for Bella and Jeff, even way out of my comfort zone.
The test was over in 45 minutes and Bella was taken to recovery so she could wake up on her own. She lay there sleeping, a little snore here and there, she looked so beautiful. My Mom and Dad were there and my Mom said "its amazing how much you can love something huh?". I couldn't have said it better. Bella woke up and gave some big stretches and even a few smiles to Mommy, Daddy, Gingie and Papa. It was over. So another worry checked off the list, another experience that has made us stronger and put in perspective our blessings and how much we have to be thankful for.
So off we went this morning. Bella's appointment was at 8am and she could not eat or drink anything after 7am. I was a bit worried because Miss Bella LIKES her food and when she doesn't have a full belly, well, lets just say she is less than happy. As I figured Bella was not in the greatest of moods while we checked in and got her ready for the test. But in Bella fashion, she was a TROOPER! And the staff at Hasbro was amazing. They have quite the operation and walked us through everything before it happened.
It was interesting to me that the entire staff that was attending to Bella were all first Pediatric Intesive Care personnel before moving over to the imaging department. That was a wonderful comfort to Jeff and I because our thoughts of course were, if anything was to happen, she is in the best place for it to be taken care of. They take such care when sedating a young child like Bella... they monitored her just as they would if she was in surgery. It really was amazing the precautions and steps they took to ensure her safety.
Both Jeff and I wanted to be with her, in the same room during the MRI, so we were screened by the MRI staff to make sure we could be due to the strength of the magnetic field surrounding the machine. Turned out that because Jeff had worked with grinding metal in the past (regardless of how many years ago) they would not let him stay for fear that if a tiny piece had lodged in his eye the magnet could move it. So Jeff was able to stand outside the door while they sedated Bella and had to leave for the test. That was an incredibly hard thing for Jeff to do and I know how badly he wanted to be in there with us. I did not want him to worry anymore than he already was so I put on my "brave face"...I could hold Bella while they put in the IV and put her to sleep. Brave face or not, I was petrified!
Since this ordeal started, Jeff has always been the one to hold Bella for bloodwork, shots etc. Now it was up to me.. I wanted to be strong for Bella and I wanted to be strong for Jeff.
Bella and I went into the MRI room and they sat her on the MRI table. I was told to hold her in a hug in front of her while they put in the IV. I thought ok, I can do this, and I was doing really well. My little Bella was crying so I started to sing her favorite song.. "I love you a bushel and a peck, a bushel and a peck and a hug around the neck"..she calmed a little and the nurses even sang along...too cute. They were able to finally get the IV in, after a little struggle, and the nurse told me the anesthesia was going in...within seconds of her saying that, my daughter went limp in my arms...that was by far the worst feeling in the world. She was fully sedated and they began to get all her monitors hooked up and position her in the MRI machine.
As tears quietly streamed down my face I watched my little precious bundle lay there, still and helpless. She seemed so small. As I sat there and just watched the blanket around her chest move up and down I prayed..I knew she was ok and this was only a minor test, but my prayer was for gratitude. All I could think about were those parents who have very sick children, children in accidents and how they have had to see their children, their babies, no matter their age, on machines breathing for them and so many of them have had to make unthinkable choices. I was so grateful that Jeff and I were not going through that. We have our Bella, here and now, smiles and hugs everyday. I did allow myself the tears, after all, this is my baby, but I did not feel sorry for myself, not at all. I was even a little proud of myself, I was able to be strong for Bella and Jeff, even way out of my comfort zone.
The test was over in 45 minutes and Bella was taken to recovery so she could wake up on her own. She lay there sleeping, a little snore here and there, she looked so beautiful. My Mom and Dad were there and my Mom said "its amazing how much you can love something huh?". I couldn't have said it better. Bella woke up and gave some big stretches and even a few smiles to Mommy, Daddy, Gingie and Papa. It was over. So another worry checked off the list, another experience that has made us stronger and put in perspective our blessings and how much we have to be thankful for.
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