What an interesting few weeks it has been. The one thing I keep finding myself saying is "Seriously?" Really, sometimes I can't even believe the things that happen in our everyday. I don't think I would even believe it if I weren't living it. The thing about all of it is that I don't know whether I really am going crazy or not, because all I can do is laugh. I can't cry. No more tears I guess. Not complaining, because I KNOW there will come a day when I really can look back on all of this and say "COMPLETELY UNBELIEVEABLE" and realize that at the same time it was making me, the kids and Bryan.....who we are today. Sometimes though, there is just a small piece of me who wishes that we weren't given all of these tests to pass. Give someone else a chance...but I know there are reasons behind them and so far we continue to make the best of every situation and chalk it up to just another day in paradise.
Brigitte has had a very, very tough few weeks. She literally is in a psychological crisis, most likely induced by pain and medical trauma. You are right in reading that my four year old (almost 5!!!) has really been driven crazy. She is on more meds than I can list and none of it seems to be helping. She has become combative to herself and others and until two nights ago, was running on less than a few hours of sleep a night. She was admitted to the hospital for a few surgical procedures, specifically switching her Gtube to a GJ tube. What was supposed to only be an hour under anesthesia turned into four hours and when she finally came to, she was a child we had never seen before. Completely delerious. Thankfully, we are finally picking up on what is really helping, and its pain medication. The poor little thing has been in so much pain, it literally made her crazy.
We came home from the hospital on Sunday night.....only to return on Monday night. Not with Brigitte, but with Sean. Again. Remember the pattern??
Sean decided to take a header off his scooter. I took him to the local urgent care because he needed stitches to his forehead.....also turns out he broke his hand.....and while we were at it, decided to have a spinal fluid leak from his ears. So off to Children's we went. THANKFULLY, the leak stopped. He got 6 stitches and orders to come back on Wednesday to see the hand surgeon since the swelling was so bad they couldn't cast him. Today it was a bit better. He does have a displaced fracture, but the doctor is optimistic it will heal nicely. Got himself a fancy cast....and back again in 3 weeks for more x-rays!
Wednesday, June 29, 2011
Saturday, June 18, 2011
Exciting Fundraising News!!!
As many of you know, Brenna is an all-star cheerleader at East Celebrity Elite in Tewksbury, MA. This is her second season there.
At the end of the season last year, we got to know a few people in the gym as well as a couple of the owners. I was asked if they could do a fundraiser for our family. One of the great things about this gym is they teach the athletes that life isn't all about cheering! They are taught to become good people on and off the mat. They are constantly reminded that they are very lucky to be a part of such an expensive and time consuming sport and that there are plenty of children who aren't able to do what they do for one reason or another. Last year they held a "tumble-a-thon" for another little girl who became an amputee due to a rare bacteria. ECE was able to raise over $13,000 to help defray medical costs and to contribute to and extreme home makeover making her house handicapped accessible. This year, they have chosen us.
First off, I was completely overwhelmed, and again very humbled that people actually care enough about our family and genuinely want to help. As you can imagine, I am sure, after reading some of the more recent blog entries, is that things are again becoming increasingly difficult for Brigitte and therefore financially for our family.
A tentative date of August 12, has been set as a Stunt-Fest at East Celebrity Elite! It really sounds like a lot of fun! I am so grateful to all of the parents, cheerleaders, coaches and owners for helping us with this!
Brigitte LOVES, LOVES, LOVES to be outside! A kind gentleman, Eric Buck, from Pollock Land Planning has donated his services to plan a new deck and patio for us. As many of you who have been following the blog for a while may remember, a year ago Brigitte got a nasty infection in her central line that came from a bug that only is found in the dirt. We have no idea how she got this, but now have to be very careful about where she plays. We are hoping that we can somehow incorporate an outdoor play area next to this so that she can go outside and enjoy the fresh air. Pollock Land Design has almost everything donated for labor, but has struggled with getting decking materials. We are working with Santosuosso/Applewood Construction to get some decking material at cost and we will be using the funds from the Stunt-Fest to help pay for this, as well as helping to defray costs associated with our constant trips to Boston.
I cannot emphasize enough how generous people have been to our family. I would strongly encourage anyone who needs construction work to utilize the services of Santosuosso/Applewood Construction or if you are in need of a great landscape designer, please call Eric at Pollock Land Planning.
Our other fundraiser is "Saving Brigitte Bracelets!!" They are pink and we have two versions of them. They are being sold for $5.00. If you would like to purchase one, please send a self-addressed, stamped envelope to me! Shannon Kaiser 1 Chestnut Hill Drive Londonderry, NH 03053 I will ship them right out to you! Or you can also purchase one at East Celebrity Elite in Tewksbury!
On a medical note, Brigitte is being admitted to Children's Hospital Boston on Friday, June 24. She is going to have an endoscopy, laryngoscopy and a bronchoscopy done. Her voice has become excessively hoarse over the last few months and is slowly getting worse. We aren't sure if there is a "problem" going on in there or if it is muscle deterioration. She is also going to have some botox put in her pylorus to see if her stomach can empty a bit faster, as well as have her GTube switched over to a GJ tube. We are hoping that we may be able to get her to tolerate feeds better by bypassing her stomach and putting the formula directly into her intestine. This is going to be a very long procedure and the last time we tried it, it didn't go very well so we could really use your thoughts and prayers for this to be successful and that she tolerates the anesthesia well.
I will continue to keep you posted! In the meantime, enjoy this wonderful weekend. Happy Father's Day to all the dads out there....especially, mine! Dad, I love you!!
At the end of the season last year, we got to know a few people in the gym as well as a couple of the owners. I was asked if they could do a fundraiser for our family. One of the great things about this gym is they teach the athletes that life isn't all about cheering! They are taught to become good people on and off the mat. They are constantly reminded that they are very lucky to be a part of such an expensive and time consuming sport and that there are plenty of children who aren't able to do what they do for one reason or another. Last year they held a "tumble-a-thon" for another little girl who became an amputee due to a rare bacteria. ECE was able to raise over $13,000 to help defray medical costs and to contribute to and extreme home makeover making her house handicapped accessible. This year, they have chosen us.
First off, I was completely overwhelmed, and again very humbled that people actually care enough about our family and genuinely want to help. As you can imagine, I am sure, after reading some of the more recent blog entries, is that things are again becoming increasingly difficult for Brigitte and therefore financially for our family.
A tentative date of August 12, has been set as a Stunt-Fest at East Celebrity Elite! It really sounds like a lot of fun! I am so grateful to all of the parents, cheerleaders, coaches and owners for helping us with this!
Brigitte LOVES, LOVES, LOVES to be outside! A kind gentleman, Eric Buck, from Pollock Land Planning has donated his services to plan a new deck and patio for us. As many of you who have been following the blog for a while may remember, a year ago Brigitte got a nasty infection in her central line that came from a bug that only is found in the dirt. We have no idea how she got this, but now have to be very careful about where she plays. We are hoping that we can somehow incorporate an outdoor play area next to this so that she can go outside and enjoy the fresh air. Pollock Land Design has almost everything donated for labor, but has struggled with getting decking materials. We are working with Santosuosso/Applewood Construction to get some decking material at cost and we will be using the funds from the Stunt-Fest to help pay for this, as well as helping to defray costs associated with our constant trips to Boston.
I cannot emphasize enough how generous people have been to our family. I would strongly encourage anyone who needs construction work to utilize the services of Santosuosso/Applewood Construction or if you are in need of a great landscape designer, please call Eric at Pollock Land Planning.
Our other fundraiser is "Saving Brigitte Bracelets!!" They are pink and we have two versions of them. They are being sold for $5.00. If you would like to purchase one, please send a self-addressed, stamped envelope to me! Shannon Kaiser 1 Chestnut Hill Drive Londonderry, NH 03053 I will ship them right out to you! Or you can also purchase one at East Celebrity Elite in Tewksbury!
On a medical note, Brigitte is being admitted to Children's Hospital Boston on Friday, June 24. She is going to have an endoscopy, laryngoscopy and a bronchoscopy done. Her voice has become excessively hoarse over the last few months and is slowly getting worse. We aren't sure if there is a "problem" going on in there or if it is muscle deterioration. She is also going to have some botox put in her pylorus to see if her stomach can empty a bit faster, as well as have her GTube switched over to a GJ tube. We are hoping that we may be able to get her to tolerate feeds better by bypassing her stomach and putting the formula directly into her intestine. This is going to be a very long procedure and the last time we tried it, it didn't go very well so we could really use your thoughts and prayers for this to be successful and that she tolerates the anesthesia well.
I will continue to keep you posted! In the meantime, enjoy this wonderful weekend. Happy Father's Day to all the dads out there....especially, mine! Dad, I love you!!
Friday, June 3, 2011
Newest Update......
Hi Everyone,
I am writing this update so I can apologize upfront if I am a little distant. I am taking some time to just "feel badly" and am hoping to get back to another new normal soon. I am also not writing this for anyones sympathy. As I stated when I started this blog, it is for me. It is a document for Brigitte to see when she is older, but also as an outlet.
Over the last few months, it has become apparent that Brigitte's condition has been slowly deteriorating in certain areas. When we went back inpatient in April to have the line placement it was the beginning of a new reality for us. While we were there, the Director of Metabolics approached us, along with Brigitte's Cardiovascular Geneticist. They wanted to do a "team" consult on Brigitte and talk to us about a few things. This talk turned into 3 hours of bedside conversation. Intense bedside conversation. It ended with a slew of blood and urine being taken from our sweet girl and an apology. "We're really sorry, but we are going to take care of her as best we can."
Over the last few weeks, new information has been trickling in. We have also had some new symptoms starting. Some that make us very uncomfortable, others just a subtle warning that things are changing.
We had two big appointments this week. One was a follow up with metabolics to go over more information and to report results of the lab work that has come back. The other was a multi-disciplanary (all her specialists) care conference called for by her hospital, not by my husband and I. Instant red flag. When the team wants to talk to you, you know something is up.
I will cut to the chase. Brigitte is finally being diagnosed with Mitochondrial Disease. We are not sure whether this is a primary mito or a secondary (the result of something else). We have been asked permission for two prominent doctors to write a proposal for full genome sequencing to be done. This alone is over $300,000 and has to be approved by the hospital. Only certain centers across the country do it and it can take years. There are over 300 billion pieces of DNA that need to be looked at. The doctors feel that she likely has two genetic defects and that the combination of the two are causing her mitochondria to malfunction. We have only identified the first. What does this mean?? It basically means that Bizzy's DNA is a train-wreck that is screwed up at a cellular level which in turn causes problems in every organ system in her body.
What do you do? What happens? There are no easy answers to any of these questions. The first thing we are doing is slowly starting her on a "mito cocktail." This is a combination of vitamins and enzymes that help the body make energy. There are usually 12 different medications that make up the cocktail. We have opted to start one at a time so we can be sure what caused the problem if her body were to have a reaction to something. It will be a long process. There is no cure for Mito, but this can help.....and vitamins and enzymes can't hurt, so we are game! After that, we are just treating symptoms as best we can. We are going to have the PACT team take a more active role in her care. This is not hospice. It is a team of people that will help us make decisions that best fit a quality of life aspect versus a quantity of life. Brigitte is still a full code and by no means says we are giving up. Just the opposite. When you hear from a room full of doctors; all who have their head down and have a hard time looking you in the eye, tell you your child has a progressive disease it is scary as hell. But, if you know me, you know I don't quit or give up that easily. I should have gone to law school, not my husband because I like to fight like hell. Which is just what I am going to do for Brig. It's funny, as I am writing this my email is going crazy with messages from her team. I am thankful that over the last few years I may have been labeled as "that mother," but it has been apparent over the last two months that this isn't a bad thing. I am a well respected part of her team and her doctors value my input. We have a few here and there that don't prescribe to our "plan" but we are weeding them out when we have good people to replace them with. I would also be remiss if I didn't acknowledge the "team" I have put together at home too. I have family. Some so amazing I wonder how I got so lucky to have them in my life, others not so much....that drop everything and do what I need. They know who they are. They know why I can't name them by name for the backlash from those who I don't name will be far harder to deal with than hearing "your daughter is dying." Fuck the rest of them who only seem to want to "deal" with us when we are in the hospital. I have an amazing friend, who's daughter died last year, but she is so fantastic that she doesn't let me do ANY of this by myself despite her own hell she lives every single day. She has guided me when I am right and has no problem telling me when I am wrong. Karen, you rock! I have an amazing nurse at home that lets me know when its not ok to let simple things go by because I don't "feel like" heading to Boston. She was the one who picked up on the seizures that picked up in intensity and led to Brig finally being put on medication. She lets me know its "OK" for me to have alone time. Maria, we LOVE you. You are family! We have an amazing community that has taken Brigitte under their wing and thinks of us during every season....not just football and cheer. We love being part of the Wildcats and East Celebrity Elite.
So, as hard as it is to think that I am going to outlive my daughter, I have to live in the present. She is kissing my arm and has said "Mommy, I NEEEEED you" 100x today.....yet, she has no idea how much I need her. We will have times when we spend days in the hospital trying to "fix" the latest crisis.....but we are going to "live it up" as best we can, for as long as we can! My dad sent me an email today. It said "Brigge is a fighter. Always has been. Always will be. I believe in her strength and her perseverance." I do too, Dad. I do too. So we will fight the good fight for as long as she'll let us and always remember we aren't "Saving Brigitte" nor have we called her "The Christmas Miracle" for nothing.
I am writing this update so I can apologize upfront if I am a little distant. I am taking some time to just "feel badly" and am hoping to get back to another new normal soon. I am also not writing this for anyones sympathy. As I stated when I started this blog, it is for me. It is a document for Brigitte to see when she is older, but also as an outlet.
Over the last few months, it has become apparent that Brigitte's condition has been slowly deteriorating in certain areas. When we went back inpatient in April to have the line placement it was the beginning of a new reality for us. While we were there, the Director of Metabolics approached us, along with Brigitte's Cardiovascular Geneticist. They wanted to do a "team" consult on Brigitte and talk to us about a few things. This talk turned into 3 hours of bedside conversation. Intense bedside conversation. It ended with a slew of blood and urine being taken from our sweet girl and an apology. "We're really sorry, but we are going to take care of her as best we can."
Over the last few weeks, new information has been trickling in. We have also had some new symptoms starting. Some that make us very uncomfortable, others just a subtle warning that things are changing.
We had two big appointments this week. One was a follow up with metabolics to go over more information and to report results of the lab work that has come back. The other was a multi-disciplanary (all her specialists) care conference called for by her hospital, not by my husband and I. Instant red flag. When the team wants to talk to you, you know something is up.
I will cut to the chase. Brigitte is finally being diagnosed with Mitochondrial Disease. We are not sure whether this is a primary mito or a secondary (the result of something else). We have been asked permission for two prominent doctors to write a proposal for full genome sequencing to be done. This alone is over $300,000 and has to be approved by the hospital. Only certain centers across the country do it and it can take years. There are over 300 billion pieces of DNA that need to be looked at. The doctors feel that she likely has two genetic defects and that the combination of the two are causing her mitochondria to malfunction. We have only identified the first. What does this mean?? It basically means that Bizzy's DNA is a train-wreck that is screwed up at a cellular level which in turn causes problems in every organ system in her body.
What do you do? What happens? There are no easy answers to any of these questions. The first thing we are doing is slowly starting her on a "mito cocktail." This is a combination of vitamins and enzymes that help the body make energy. There are usually 12 different medications that make up the cocktail. We have opted to start one at a time so we can be sure what caused the problem if her body were to have a reaction to something. It will be a long process. There is no cure for Mito, but this can help.....and vitamins and enzymes can't hurt, so we are game! After that, we are just treating symptoms as best we can. We are going to have the PACT team take a more active role in her care. This is not hospice. It is a team of people that will help us make decisions that best fit a quality of life aspect versus a quantity of life. Brigitte is still a full code and by no means says we are giving up. Just the opposite. When you hear from a room full of doctors; all who have their head down and have a hard time looking you in the eye, tell you your child has a progressive disease it is scary as hell. But, if you know me, you know I don't quit or give up that easily. I should have gone to law school, not my husband because I like to fight like hell. Which is just what I am going to do for Brig. It's funny, as I am writing this my email is going crazy with messages from her team. I am thankful that over the last few years I may have been labeled as "that mother," but it has been apparent over the last two months that this isn't a bad thing. I am a well respected part of her team and her doctors value my input. We have a few here and there that don't prescribe to our "plan" but we are weeding them out when we have good people to replace them with. I would also be remiss if I didn't acknowledge the "team" I have put together at home too. I have family. Some so amazing I wonder how I got so lucky to have them in my life, others not so much....that drop everything and do what I need. They know who they are. They know why I can't name them by name for the backlash from those who I don't name will be far harder to deal with than hearing "your daughter is dying." Fuck the rest of them who only seem to want to "deal" with us when we are in the hospital. I have an amazing friend, who's daughter died last year, but she is so fantastic that she doesn't let me do ANY of this by myself despite her own hell she lives every single day. She has guided me when I am right and has no problem telling me when I am wrong. Karen, you rock! I have an amazing nurse at home that lets me know when its not ok to let simple things go by because I don't "feel like" heading to Boston. She was the one who picked up on the seizures that picked up in intensity and led to Brig finally being put on medication. She lets me know its "OK" for me to have alone time. Maria, we LOVE you. You are family! We have an amazing community that has taken Brigitte under their wing and thinks of us during every season....not just football and cheer. We love being part of the Wildcats and East Celebrity Elite.
So, as hard as it is to think that I am going to outlive my daughter, I have to live in the present. She is kissing my arm and has said "Mommy, I NEEEEED you" 100x today.....yet, she has no idea how much I need her. We will have times when we spend days in the hospital trying to "fix" the latest crisis.....but we are going to "live it up" as best we can, for as long as we can! My dad sent me an email today. It said "Brigge is a fighter. Always has been. Always will be. I believe in her strength and her perseverance." I do too, Dad. I do too. So we will fight the good fight for as long as she'll let us and always remember we aren't "Saving Brigitte" nor have we called her "The Christmas Miracle" for nothing.
Wednesday, May 11, 2011
Dropping the ball.....again.
It's 11:15 and I am sitting here, realizing that I have done it again. Done what you asked? Well, actually, its a matter of what I didn't do. First time I felt bad, this time, I feel downright incompetent. Actually, I just realized I have done it three times. Now, I feel like an ass.
Last week I was supposed to have dropped off a gift card for teacher appreciation week. Forgot to do it. At least the mom was nice enough to remind me and really understand. I still felt bad. It was that same night, that I realized that I had never sent in the money for the Father/Daughter dance. You know, the dance that my child hasn't wanted to attend for the last few years, but now all of a sudden does. So I emailed again, with apologies again...and got a "Please send the money in tomorrow!" Ok, done.
Today, I was supposed to make macaroni salad for teacher appreciation week. Except I thought it was tomorrow.....not today, and the luncheon is RIGHT NOW. I am the ass of all asses and there isn't a damn thing I can do about it except apologize.
I hate to use Brigitte as my excuse, but sometimes she is all I have. I am trying to manage a busy household of 4 kids....and a husband who doesn't come home much during the week because gas prices are too high and he's exhausted.
I am juggling 2 baseball teams, all-star cheering, private tumbling lessons, therapy sessions, IEP and 504 meetings, doctors appointments, food school, a husband, a dog, etc. There is no time for me....and I don't allow myself to make mistakes. Yet, I have made 3 BIG ONES in the last week all at the expense of the three children who deserve it the least.
Today's post is a total vent. Not looking for sympathy or excuses....just getting it out on paper. Being accountable for it and admitting it. Realizing that I really cannot do it all.
Last week I was supposed to have dropped off a gift card for teacher appreciation week. Forgot to do it. At least the mom was nice enough to remind me and really understand. I still felt bad. It was that same night, that I realized that I had never sent in the money for the Father/Daughter dance. You know, the dance that my child hasn't wanted to attend for the last few years, but now all of a sudden does. So I emailed again, with apologies again...and got a "Please send the money in tomorrow!" Ok, done.
Today, I was supposed to make macaroni salad for teacher appreciation week. Except I thought it was tomorrow.....not today, and the luncheon is RIGHT NOW. I am the ass of all asses and there isn't a damn thing I can do about it except apologize.
I hate to use Brigitte as my excuse, but sometimes she is all I have. I am trying to manage a busy household of 4 kids....and a husband who doesn't come home much during the week because gas prices are too high and he's exhausted.
I am juggling 2 baseball teams, all-star cheering, private tumbling lessons, therapy sessions, IEP and 504 meetings, doctors appointments, food school, a husband, a dog, etc. There is no time for me....and I don't allow myself to make mistakes. Yet, I have made 3 BIG ONES in the last week all at the expense of the three children who deserve it the least.
Today's post is a total vent. Not looking for sympathy or excuses....just getting it out on paper. Being accountable for it and admitting it. Realizing that I really cannot do it all.
Thursday, April 21, 2011
She tried.....
So in my last post, I alluded to the fact that things hadn't been great for Brigitte for a while. Sadly, they haven't gotten any better.
I went to Florida with Brenna for her National Cheerleading Competition back in March. We had a wonderful time together and I was finally starting to feel a little normalcy. It was wonderful to be away and I couldn't help but think about how great the summer was going to be. We arrived back home from Orlando on a Monday night at 10:45.....Brigitte hadn't been doing all that well on Monday, and she was admitted to Children's on Tuesday morning at 9:00 am. I didn't even get 12 hours at home.
We spent the next 10 days inpatient, where she underwent 3 different surgeries. During one of them, her blood pressure dipped dangerously low and she needed a very strong medication to avoid a code. The last was to remove the port she had in place because it was infected. She has been without central access since then....and it has been a downhill slide since then.
We knew that this was a big concern and I have to be honest and tell you that nobody on her team was comfortable with the decision that Bryan and I made to take her home without a line. But, we needed to put all of the "can she do it" wondering to rest and give her the opportunity. So for the last month, we have struggled and struggled with trying to feed her and keep her hydrated. From a health standpoint, we have also battled a pneumonia as well which hasn't helped things. From a nutrition standpoint, it is hard to ever recover from illness when you are are not optimizing nutrition and hydration. Brigitte is now below the 30lb mark....she will be 5 in August. Her size 2T pants are falling off of her. I feel like I am going to crush every little bone in her body when I hug her. It is so sad.
Thankfully, she has had a good week at school. It is the only place she is happy. It is the only place where everyone just leaves her alone and lets her be a little girl.
Her behavior has been absolutely horrendous. She is hitting herself, throwing temper tantrums, and slamming her head against the floor. We are attributing this to the fact that dehydration makes you feel just plain crummy and she can't express herself and this is how she reacts. It is awful to watch. My heart truly, truly aches to watch her like this. Add to this that food in her belly really just makes her sick, she is gagging and retching with quite a few of her daytime boluses and we spend every morning holding her hair back with a towel in front of her face waiting for her to say "I all done" while she vomits from the intolerance to the overnight feeds.
This is no way for a little girl who is typically so happy to live. None. Its not fair.
So, next Thursday her surgeon will again use up another precious access spot (you only have so many in your body) and place a central line. She will resume TPN and hydration immediately following the surgery. I honestly don't know where we go from here. I don't know what her future holds.....so please, don't ask me. I just wanted to keep you all up to date and again ask for prayers for Brigitte. Thank you so much for always thinking of us. It means so much to us. It really does.
I went to Florida with Brenna for her National Cheerleading Competition back in March. We had a wonderful time together and I was finally starting to feel a little normalcy. It was wonderful to be away and I couldn't help but think about how great the summer was going to be. We arrived back home from Orlando on a Monday night at 10:45.....Brigitte hadn't been doing all that well on Monday, and she was admitted to Children's on Tuesday morning at 9:00 am. I didn't even get 12 hours at home.
We spent the next 10 days inpatient, where she underwent 3 different surgeries. During one of them, her blood pressure dipped dangerously low and she needed a very strong medication to avoid a code. The last was to remove the port she had in place because it was infected. She has been without central access since then....and it has been a downhill slide since then.
We knew that this was a big concern and I have to be honest and tell you that nobody on her team was comfortable with the decision that Bryan and I made to take her home without a line. But, we needed to put all of the "can she do it" wondering to rest and give her the opportunity. So for the last month, we have struggled and struggled with trying to feed her and keep her hydrated. From a health standpoint, we have also battled a pneumonia as well which hasn't helped things. From a nutrition standpoint, it is hard to ever recover from illness when you are are not optimizing nutrition and hydration. Brigitte is now below the 30lb mark....she will be 5 in August. Her size 2T pants are falling off of her. I feel like I am going to crush every little bone in her body when I hug her. It is so sad.
Thankfully, she has had a good week at school. It is the only place she is happy. It is the only place where everyone just leaves her alone and lets her be a little girl.
Her behavior has been absolutely horrendous. She is hitting herself, throwing temper tantrums, and slamming her head against the floor. We are attributing this to the fact that dehydration makes you feel just plain crummy and she can't express herself and this is how she reacts. It is awful to watch. My heart truly, truly aches to watch her like this. Add to this that food in her belly really just makes her sick, she is gagging and retching with quite a few of her daytime boluses and we spend every morning holding her hair back with a towel in front of her face waiting for her to say "I all done" while she vomits from the intolerance to the overnight feeds.
This is no way for a little girl who is typically so happy to live. None. Its not fair.
So, next Thursday her surgeon will again use up another precious access spot (you only have so many in your body) and place a central line. She will resume TPN and hydration immediately following the surgery. I honestly don't know where we go from here. I don't know what her future holds.....so please, don't ask me. I just wanted to keep you all up to date and again ask for prayers for Brigitte. Thank you so much for always thinking of us. It means so much to us. It really does.
Thursday, April 14, 2011
It's been a long time......
I wish I could say that things have been so gloriously good and that is why I haven't written...but that would be a lie! But that isn't what today's post is about. I will save you all the gory details of the drama of the last few months for another post on another day. Today instead, is about my oldest daughter, Brenna.
Brenna will be 10 on Saturday. I simply cannot believe it.
Was she not the most beautiful baby?!?!? I know I am biased, but I don't think there is a single one of you that can look at that picture and not say she was a gorgeous child. Not only is she beautiful to look at, but she has become a beautiful person with more determination and compassion than I could have ever instilled in her.
Brenna had her banquet with East Celebrity Elite last night. I walked in there thinking how amazingly proud I was of Brenna this year. Although it was not her first year as a cheerleader, it was her first year at a gym of this caliber. She walked through the doors of ECE last May not knowing a soul and only having a tumbling skill of a cartwheel and a roundoff. She competed nationally and her team placed 3rd in the Nation at the UCA Nationals in Orlando this past March. She learned what hard work really was and also that if you put your mind to something, anything you want can happen.
The last few years have been anything but easy for Brenna. Growing up the oldest child of a large family is a job in and of itself. Being the oldest girl in a family with a child with severe medical issues is another story. Brenna has learned to rise to the occasion. She is wonderful with Brigitte. Her patience is that of a saint (she does not get this from me!!!) and her grace is something we should all strive to acheive. She has always been a good girl and my dad is right when he says that she is always happy. She truly is. She has become quite the little comedian and I am finding that she is developing a bit of my, ummmmm, sarcasm! It has been nothing but sheer joy to watch her grow over the last few years.
Last night, though, I saw her change in front of me instantly. The banquet consisted of the owners of the gym, coaches from various teams, parents and of course all the girls on the mini and junior level teams. Each set of coaches from each team got up and said something about each girl on the team and then had a few "specialty" awards to give out. One of them was the unsung hero award. As they were describing this cheerleader, they said "she is a girl who always did what we asked of her," "she is a girl who never complained if she were in the back row," "she volunteered to fill a void whenever we needed her to," "quietly one day this girl said "I can do my double backhandspring, want to see it?"....and then landed it perfectly. The Unsung Hero for Junior 3 is........Brenna Kaiser.
I was in a room full of people and just wanted to cry. I have never been so proud, with the exception of the day I gave birth to her.
The definition of an Unsung Hero is: a person who makes a substantive yet unrecognized contribution; a person whose bravery is unknown or unacknowledged
Reading this definition this morning, I realized that this award couldn't have been more fitting. Brenna certainly did her share and earned that award all on her own. But she is the unsung hero of our household as well. She has taken a backseat over the last four and a half years. She has sacrificed and been brave far beyond any 10 year old I have ever met. She never asks for anything, never complains and yet, just when I think I am going to lose it on Brigitte some days, Brenna walks around the corner and takes her by the hand to the other room and plays with her. She does all of this and yet NEVER, EVER asks for any recognition. None.
She is amazing. She is beautiful. She is smart. She has worked to land backhandsprings and tucks. She has a wonderful imagination. She is determined. She is compassionate. She is my daughter. And I am the luckiest mom in the world to have her.
Happy 10th Birthday Brenna!! I love you with all of my heart. You make me so proud every, single day.
Brenna will be 10 on Saturday. I simply cannot believe it.
Was she not the most beautiful baby?!?!? I know I am biased, but I don't think there is a single one of you that can look at that picture and not say she was a gorgeous child. Not only is she beautiful to look at, but she has become a beautiful person with more determination and compassion than I could have ever instilled in her.
Brenna had her banquet with East Celebrity Elite last night. I walked in there thinking how amazingly proud I was of Brenna this year. Although it was not her first year as a cheerleader, it was her first year at a gym of this caliber. She walked through the doors of ECE last May not knowing a soul and only having a tumbling skill of a cartwheel and a roundoff. She competed nationally and her team placed 3rd in the Nation at the UCA Nationals in Orlando this past March. She learned what hard work really was and also that if you put your mind to something, anything you want can happen.
The last few years have been anything but easy for Brenna. Growing up the oldest child of a large family is a job in and of itself. Being the oldest girl in a family with a child with severe medical issues is another story. Brenna has learned to rise to the occasion. She is wonderful with Brigitte. Her patience is that of a saint (she does not get this from me!!!) and her grace is something we should all strive to acheive. She has always been a good girl and my dad is right when he says that she is always happy. She truly is. She has become quite the little comedian and I am finding that she is developing a bit of my, ummmmm, sarcasm! It has been nothing but sheer joy to watch her grow over the last few years.
Last night, though, I saw her change in front of me instantly. The banquet consisted of the owners of the gym, coaches from various teams, parents and of course all the girls on the mini and junior level teams. Each set of coaches from each team got up and said something about each girl on the team and then had a few "specialty" awards to give out. One of them was the unsung hero award. As they were describing this cheerleader, they said "she is a girl who always did what we asked of her," "she is a girl who never complained if she were in the back row," "she volunteered to fill a void whenever we needed her to," "quietly one day this girl said "I can do my double backhandspring, want to see it?"....and then landed it perfectly. The Unsung Hero for Junior 3 is........Brenna Kaiser.
I was in a room full of people and just wanted to cry. I have never been so proud, with the exception of the day I gave birth to her.
The definition of an Unsung Hero is: a person who makes a substantive yet unrecognized contribution; a person whose bravery is unknown or unacknowledged
Reading this definition this morning, I realized that this award couldn't have been more fitting. Brenna certainly did her share and earned that award all on her own. But she is the unsung hero of our household as well. She has taken a backseat over the last four and a half years. She has sacrificed and been brave far beyond any 10 year old I have ever met. She never asks for anything, never complains and yet, just when I think I am going to lose it on Brigitte some days, Brenna walks around the corner and takes her by the hand to the other room and plays with her. She does all of this and yet NEVER, EVER asks for any recognition. None.
She is amazing. She is beautiful. She is smart. She has worked to land backhandsprings and tucks. She has a wonderful imagination. She is determined. She is compassionate. She is my daughter. And I am the luckiest mom in the world to have her.
Happy 10th Birthday Brenna!! I love you with all of my heart. You make me so proud every, single day.
Friday, February 4, 2011
Monday, January 3, 2011
Generosity....
In my last post I told you about some of the amazing people that made our holidays brighter. I really hate naming names, because there are so many people that I am leaving out and I don't want anyone to think for one second that something one person did was better than another. EVERYTHING everyone has done for us has been amazing.
In some instances, there are people that you really can't thank, because they have gone out of their way to do something anonymously. These people are the cream of the crop. Doing something purely for the sake of doing and never looking for anything at all in return.
We happened to be in Home Depot one day just before Christmas. We were trying to get some lights and things to make the house pretty for the kids. Bryan and I got separated at one point, and as usual I had Brigitte. Everyone in the store knew she was there....her screams were audible to even the hardest of hearing. I was forcing a smile on my face because I knew everyone was staring at me, and I was doing all I could do to either not burst into tears or snap!! After finding Bryan back over in the Holiday section we began to have a bit of an argument as quietly as we could. He was worried about spending to much money, and I just cared about making Christmas the best we could for the kids because there is always that fear in the back of my head "What if this is the last one with all of us together?" I put a few things back, and we were getting ready to get in line when a woman approached me. I thought for sure she was going to tell me my daughter was obnoxious, but instead "Julie" handed me a gift card and said "I have followed your blog and just wanted you to know that I am praying for all of you. Have a very Merry Christmas!!" I could hardly get the words out of my mouth to say Thank You and she was gone.
Today, I came home and made my dreaded trek to the mailbox where I normally find more bills than anything. This time there was a red envelope that was stuck in a plastic bag with a note from the post office "sorry our machine ripped your envelope, but here it is!!" Not really like that, but you get the point. I opened the envelope and found a gift card to Papa Gino's "From our family to yours, Have a Merry Christmas."
There is alot of goodness in so many. I don't know really where I am going with all of this, other than just wanting to thank you all again. I have never been good about sending Thank You notes. Now, I have so many to send I am completely overwhelmed and dont' know where to begin. I think I even lost track of who I need to send them too. I guess I just want all of you who have helped to really know how much we truly do appreciate what you have done. There will come a day when I am able to "give back" properly, but for now I try my best to say "Thank You" when I can, and truly mean it.
In some instances, there are people that you really can't thank, because they have gone out of their way to do something anonymously. These people are the cream of the crop. Doing something purely for the sake of doing and never looking for anything at all in return.
We happened to be in Home Depot one day just before Christmas. We were trying to get some lights and things to make the house pretty for the kids. Bryan and I got separated at one point, and as usual I had Brigitte. Everyone in the store knew she was there....her screams were audible to even the hardest of hearing. I was forcing a smile on my face because I knew everyone was staring at me, and I was doing all I could do to either not burst into tears or snap!! After finding Bryan back over in the Holiday section we began to have a bit of an argument as quietly as we could. He was worried about spending to much money, and I just cared about making Christmas the best we could for the kids because there is always that fear in the back of my head "What if this is the last one with all of us together?" I put a few things back, and we were getting ready to get in line when a woman approached me. I thought for sure she was going to tell me my daughter was obnoxious, but instead "Julie" handed me a gift card and said "I have followed your blog and just wanted you to know that I am praying for all of you. Have a very Merry Christmas!!" I could hardly get the words out of my mouth to say Thank You and she was gone.
Today, I came home and made my dreaded trek to the mailbox where I normally find more bills than anything. This time there was a red envelope that was stuck in a plastic bag with a note from the post office "sorry our machine ripped your envelope, but here it is!!" Not really like that, but you get the point. I opened the envelope and found a gift card to Papa Gino's "From our family to yours, Have a Merry Christmas."
There is alot of goodness in so many. I don't know really where I am going with all of this, other than just wanting to thank you all again. I have never been good about sending Thank You notes. Now, I have so many to send I am completely overwhelmed and dont' know where to begin. I think I even lost track of who I need to send them too. I guess I just want all of you who have helped to really know how much we truly do appreciate what you have done. There will come a day when I am able to "give back" properly, but for now I try my best to say "Thank You" when I can, and truly mean it.
Friday, December 31, 2010
New Year....
You know its been crazy when a month has gone by without a post....Crazy is an understatement.
I wanted to thank so many of you for all the encouraging words when I went back to work. The long and short of it.....it was an EPIC FAIL. I lasted all of two days. Two days I won't get back. So, how amazing do you think I am now? Not very, I know.
Quitting was harder than deciding to start. All the hopes and dreams I had for myself and for my future went out the window. All the hard lessons that I told myself I needed to deal with...non-existent.
There were a few reasons behind it. One being my arrangements for the kids were falling through minute by minute. It was easy to see that two days into it, it wasn't going to work long term at all. But the hard and honest truth is that I just can't be away from her. I will never get the night of almost losing her out of my head. I can't no matter how hard I try. All I can remember is trying to make her say "I love you" while I tried to record it on my phone. I made her do it over and over even though she was weak and didn't want to. I needed to hear it.
I sat at work for two days wondering what in the hell I was doing? I know now that I needed to just get it out of my system or it was something I was going to obsess about constantly. I humbled myself and realized it was just something I wasn't ready or willing to do. That is the short of it.
Over the last few weeks, I have realized that it was what I needed to do. And being home with her (with breaks here and there) is where I need to be. I have a few things up my sleeve, that if they work out will be a much better solution for me, my family, and for Brigitte. In the meantime, the images, sounds, feelings of that night are to fresh in my mind and I just need to be "around."
We have been overwhelmed by the generosity of this community over the last few weeks. Just as panic was setting in about how we would make Christmas happen, everything just started to come together. It has been a sign that I did the right thing....and people really do want to help.
We were blessed by the generosity of Laurie Kolifrath and New Beginnings Nail Salon who set up a "giving tree"...I was astonished at how many things were delivered to our family. Thank you will never be enough. The day before Christmas Eve, we also visited North Londonderry Elementary and were overwhelmed with the donations made by North School Staff, families, and especially Danielle Blair...a 5th grader who made ornaments out of toys and sold them to help benefit our family. There are so many of you out there that I owe Thank You's to. I am hoping to get to them soon. I promise. Please know that we are so grateful to EVERY SINGLE PERSON who has helped. I may not have mentioned you here, but please know how much we appreciate all you have done for us. Really, my words are completely inadequate and I will never be able to express how we really feel.
So here we are, another New Year upon us. I am not hoping for a better year than the last. I refuse to do it anymore. Instead, I am just hoping to focus on what was good from 2010. My son, Sean, endured two brain surgeries and is playing out in the snow as I type. My daughter, Brigitte, wasn't expeceted to live and is now in the living room SCREAMING at the top of her lungs!! She even uttered a very appropriate "DON'T TALK TO ME" this week! My son, Jake, went undefeated in football and won the Mity Mite Superbowl! My daughter, Brenna, became a National Junior 3 Co-ed Champion two weeks ago in cheerleading!
Life is Good....and we will take that for however long it wants to stick around.
Happy New Year!!!
I wanted to thank so many of you for all the encouraging words when I went back to work. The long and short of it.....it was an EPIC FAIL. I lasted all of two days. Two days I won't get back. So, how amazing do you think I am now? Not very, I know.
Quitting was harder than deciding to start. All the hopes and dreams I had for myself and for my future went out the window. All the hard lessons that I told myself I needed to deal with...non-existent.
There were a few reasons behind it. One being my arrangements for the kids were falling through minute by minute. It was easy to see that two days into it, it wasn't going to work long term at all. But the hard and honest truth is that I just can't be away from her. I will never get the night of almost losing her out of my head. I can't no matter how hard I try. All I can remember is trying to make her say "I love you" while I tried to record it on my phone. I made her do it over and over even though she was weak and didn't want to. I needed to hear it.
I sat at work for two days wondering what in the hell I was doing? I know now that I needed to just get it out of my system or it was something I was going to obsess about constantly. I humbled myself and realized it was just something I wasn't ready or willing to do. That is the short of it.
Over the last few weeks, I have realized that it was what I needed to do. And being home with her (with breaks here and there) is where I need to be. I have a few things up my sleeve, that if they work out will be a much better solution for me, my family, and for Brigitte. In the meantime, the images, sounds, feelings of that night are to fresh in my mind and I just need to be "around."
We have been overwhelmed by the generosity of this community over the last few weeks. Just as panic was setting in about how we would make Christmas happen, everything just started to come together. It has been a sign that I did the right thing....and people really do want to help.
We were blessed by the generosity of Laurie Kolifrath and New Beginnings Nail Salon who set up a "giving tree"...I was astonished at how many things were delivered to our family. Thank you will never be enough. The day before Christmas Eve, we also visited North Londonderry Elementary and were overwhelmed with the donations made by North School Staff, families, and especially Danielle Blair...a 5th grader who made ornaments out of toys and sold them to help benefit our family. There are so many of you out there that I owe Thank You's to. I am hoping to get to them soon. I promise. Please know that we are so grateful to EVERY SINGLE PERSON who has helped. I may not have mentioned you here, but please know how much we appreciate all you have done for us. Really, my words are completely inadequate and I will never be able to express how we really feel.
So here we are, another New Year upon us. I am not hoping for a better year than the last. I refuse to do it anymore. Instead, I am just hoping to focus on what was good from 2010. My son, Sean, endured two brain surgeries and is playing out in the snow as I type. My daughter, Brigitte, wasn't expeceted to live and is now in the living room SCREAMING at the top of her lungs!! She even uttered a very appropriate "DON'T TALK TO ME" this week! My son, Jake, went undefeated in football and won the Mity Mite Superbowl! My daughter, Brenna, became a National Junior 3 Co-ed Champion two weeks ago in cheerleading!
Life is Good....and we will take that for however long it wants to stick around.
Happy New Year!!!
Monday, December 6, 2010
Changes.....
It's been a bit since I last updated. I am so sorry. Things are just busy here. I feel like I say that all the time. Not like its any different at your house, right? We are all busy!!!
Brigitte is holding her own right now and proving day in and day out that IV nutrition is truly what her body needs. I can say she is doing fantastic. Her new port has been wonderful, she has energy, her color looks good, and she doesn't look like a bag of bones anymore. Now, unfortunately, things aren't perfect and we've got issues we are dealing with....but seems as if this is about as good as it is going to get. So I will take it for however long it lasts. We are in the process of working with her TVI (teacher for the visually impaired) and her neurologist. Her brain MRI and her vision issues are making it pretty clear that she has a cortical vision impairment. For all intents and purposes, she is likely going to be declared "legally blind" but not in the sense that she can't see. She can see, she just doesn't process correctly. So this isn't actually an eye issue, but a brain issue. Its hard to explain, so I won't try to here, but it does explain alot of the issues we are seeing related to her learning style and why she has such a hard time moving around and being who she is. Once again....its a process.
Sean is doing remarkably well too. He has not complained once of a headache or neck pain. He isn't complaining about school. He is doing fantastic in school!! Best decision we ever made was having that second surgery. He was referred to Make a Wish and will be having his wish granted very shortly! He is beyond excited.....and so are we!!!
I made the leap into the working world again today. After almost 9 years of being home with the kids, I returned to work full time. This was one of the most emotional decisions I have ever had to make. Financially, it was a no-brainer. I am feeling much better about it tonight than I was yesterday, but it is hard no matter what. People have asked me time and time again since I got the offer if I "was excited??" Excitement was the last thing on my mind. Am I happy to be among adults again and earn my own paycheck? No doubt about it. Other than that....not much to be excited about. My reasons for doing this aren't purely financial...but are sadly, very emotional.
It is hard for me to explain how this felt. First of all, if it weren't for the availability of a nurse with whom I am very confident will take very good care of Brigitte in my absence, this NEVER would have happened. For her, I am very grateful. My life has become all about Brigitte and less and less about anyone else. That includes my other children, my husband, and more importantly, myself. Brigitte and I are one in the same. There would be no me without her and there would be no her without me. We are inseparable on so many levels. I know that sounds beautiful, but it really isn't. Its not good for either of us.
The big elephant in the room is that more likely than not, I will outlive my daughter barring some major breakthrough in medicine or a miracle which cures her. I have come to accept that over the last few months. Its been a hard realization, but it is reality. Until today, the last four years of my life have revolved around taking care of Brigitte. I have forgotten how to do anything else or be who I used to be. I honestly cannot for the life of me remember what life was like before Brigitte. I really can't. I have become a machine just going through the motions to get through every day.
So today, I did it. I cried the entire way to work. I cried on my break. I cried on the way home. But I did it. I got through the first day. All I can think about is that the time I am away is time I am losing with her. Hours and days that are limited are hours and days I will never get back. However, I also thought about all the things this going to allow my family and I to do. Next year, Brigitte will be in Kindergarten 5 days a week. The year after that 1st grade, full days. Then where will I be? That "something" will ultimately take Brigitte, but I can't allow it to take me too.
Merry Christmas!!
Brigitte is holding her own right now and proving day in and day out that IV nutrition is truly what her body needs. I can say she is doing fantastic. Her new port has been wonderful, she has energy, her color looks good, and she doesn't look like a bag of bones anymore. Now, unfortunately, things aren't perfect and we've got issues we are dealing with....but seems as if this is about as good as it is going to get. So I will take it for however long it lasts. We are in the process of working with her TVI (teacher for the visually impaired) and her neurologist. Her brain MRI and her vision issues are making it pretty clear that she has a cortical vision impairment. For all intents and purposes, she is likely going to be declared "legally blind" but not in the sense that she can't see. She can see, she just doesn't process correctly. So this isn't actually an eye issue, but a brain issue. Its hard to explain, so I won't try to here, but it does explain alot of the issues we are seeing related to her learning style and why she has such a hard time moving around and being who she is. Once again....its a process.
Sean is doing remarkably well too. He has not complained once of a headache or neck pain. He isn't complaining about school. He is doing fantastic in school!! Best decision we ever made was having that second surgery. He was referred to Make a Wish and will be having his wish granted very shortly! He is beyond excited.....and so are we!!!
I made the leap into the working world again today. After almost 9 years of being home with the kids, I returned to work full time. This was one of the most emotional decisions I have ever had to make. Financially, it was a no-brainer. I am feeling much better about it tonight than I was yesterday, but it is hard no matter what. People have asked me time and time again since I got the offer if I "was excited??" Excitement was the last thing on my mind. Am I happy to be among adults again and earn my own paycheck? No doubt about it. Other than that....not much to be excited about. My reasons for doing this aren't purely financial...but are sadly, very emotional.
It is hard for me to explain how this felt. First of all, if it weren't for the availability of a nurse with whom I am very confident will take very good care of Brigitte in my absence, this NEVER would have happened. For her, I am very grateful. My life has become all about Brigitte and less and less about anyone else. That includes my other children, my husband, and more importantly, myself. Brigitte and I are one in the same. There would be no me without her and there would be no her without me. We are inseparable on so many levels. I know that sounds beautiful, but it really isn't. Its not good for either of us.
The big elephant in the room is that more likely than not, I will outlive my daughter barring some major breakthrough in medicine or a miracle which cures her. I have come to accept that over the last few months. Its been a hard realization, but it is reality. Until today, the last four years of my life have revolved around taking care of Brigitte. I have forgotten how to do anything else or be who I used to be. I honestly cannot for the life of me remember what life was like before Brigitte. I really can't. I have become a machine just going through the motions to get through every day.
So today, I did it. I cried the entire way to work. I cried on my break. I cried on the way home. But I did it. I got through the first day. All I can think about is that the time I am away is time I am losing with her. Hours and days that are limited are hours and days I will never get back. However, I also thought about all the things this going to allow my family and I to do. Next year, Brigitte will be in Kindergarten 5 days a week. The year after that 1st grade, full days. Then where will I be? That "something" will ultimately take Brigitte, but I can't allow it to take me too.
Merry Christmas!!
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