Investing

Sure has been a long time since I've written, huh? Wow, almost a year. Sure do have alot to fill you all in on, but most of it is just the usual. So, one might ask "Why start again now?"  I'm not sure, other than I feel this need to share.

Brigitte is in the hospital, again.  Seems to be the never ending story of my life. She had surgery on Monday and isn't recovering as quickly as we would have liked, but; nonetheless, its a story that has been written time and and time again.  Seems like the never ending saga. But, that's not why I write tonight.

I wanted to share what's been going on with "me!!"  Yes, me.  Some things have changed for me over the last few months. I'm not completely certain why its finally happening, but it is and instead of running away from it like I have done so often; I am embracing it.  It feels amazing.  It feels right.  

In May, I applied to be a LEND Fellow at Children's Hospital in Boston. www.lendboston.org  I remember the day I sent my application in.  It was the deadline for it being due, and I totally did it on a whim, never imagining I would get in, and secretly wishing I wouldn't, because that would mean I would have to get out of the protective little box I have found myself in for the last six years.  The interview is a complete blur, except I do remember thinking to myself, "I am so under-qualified for this, I'll never get it."

Much to my surprise, I got a call in June that I had been accepted.  For the first time in my life, I didn't know how to feel.  I was torn in two distinct directions.  One side of my brain telling me that it was amazing and that my life was finally going to change in the direction I had wanted it to for a long time.  I finally had a purpose that meant something other than wiping boogers and making lunches.  I was being recognized for all the hard work I had put into "Saving Brigitte."  Literally and figuratively.  Then, there was the other side of me that was already plotting to sabotage this opportunity, much like every other one I had been given.

You see, for the last six years, I have done what I thought every mother would do for their children.  I have fought, I have advocated, I have been "that mother," because I just assumed that is what every parent does for their child.  I have managed to make it to every single football game, every single cheerleading competition, every single school event.  I have balanced what's right for Brigitte and also balanced the life of three other very active children who might not have special health care needs, but need me as much as she does.  I have realized that most of the time this doesn't happen.  Most of the time, people listen to the doctors,educators, and professionals.  They nod their head and just to whatever it is they tell them to do. They don't question things, they don't research, some even do nothing.  Yes, they exist.

Over the past year, I found myself advocating for Jake at school.  He has been passed along as "such a good boy,"  "he's just immature, he'll catch up."  Only to find out that I should have followed my instinct a while ago when I thought something was wrong.  I was lucky to have an ally in his fourth grade teacher, whom to this day, was instrumental in getting him diagnosed after so many others just ignored a very obvious problem.  Jake was diagnosed with NVLD in February.  

Again, I was immersed in a world I really wanted nothing to do with, but was learning as much as I possibly could learn.  Pushed into a community that I now realize so desperately needs me and my passion to do what is right for these kids; not only my own, but countless others.

Its been two weeks since I started on my new journey as a LEND Fellow.  I proudly describe what it is.  I have a confidence about me that I didn't know existed because I am constantly down-playing just how critical I have been in my children's development and subsequent successes.  It was pointed out to me again on Tuesday, as I sat in another training class that started this week.  I am taking a course on Educational Advocacy through the Federation for Children with Special Needs. www.fcsn.org

We were going around the room introducing ourselves and what our affiliations were, when the Executive Director stopped me to tell the class just how elite the group of LEND Fellows were.  At first I was embarrassed, but then it happened.  This wave of pride came over me and no matter how hard I try, I can't get it to go away.  I am finding myself fantastically overwhelmed by all the knowledge I am gaining from both of these programs.  I wake up every. single. morning., EXCITED about my future and that of my children.  Excited to finally put my knowledge out there to help others.

I will admit, it has been very difficult to leave the hospital for my classes this week, but as my good friend Cristin, a former LEND Fellow,(www.durgastoolbox.com) said, "giving yourself over to the class is an investment in her and her future."  How right she is!!!  With any luck, it will also be an investment in the future of children and families who walk the road of disabilities.

Amazing.......

Last night was one of the most memorable nights in my life. I will never forget it.

We are a HUGE football family. We lived for the day that Jake would take the football field and follow in Buppa and Uncle's footsteps. Naturally, we just assumed that Sean would follow as well.

This time last year, I was a nervous wreck, but was calmed and reassured by so many family, friends, and WILDCAT family that bleeds blue, just like us. Sean was going to have what would be the first of two major brain surgeries in two months time. He certainly wouldn't be tying up his cleats each night with Jake. Instead, he would watch his big brother from the sidelines every Sunday with a 6 inch scar on the back of his head. A constant reminder of what was.

This year practice started about two weeks ago. Sean had clearance to play, but made the decision not to play. It just wasn't his thing and he didn't want to do it. No big deal. Would save me from having to have 3 kids on 3 different teams. Phew.

Thursday night that all changed. He was begging me to play. Part of me was thrilled, the other part of me was enjoying the thought of having one night during the week of not having anything to do at all. Family dinners at the table every Thursday night. Sean felt left out.

So, last night, Sean sat on the stairs lacing up his cleats just like his big brother, just like his uncle, just like his Buppa.

Not even 12 months later, my baby, the one I put in a NeuroSurgeons hands TWICE. The baby who had one piece of his skull removed during the first surgery and had another piece of synthetic material placed in his brain during his second surgery......was PLAYING FOOTBALL! I have visions of my boys playing together for years to come. People are going to whisper "That's those Kaiser boys....watch out, they are THAT good." Most will never know what one of those boys went through physically nor what the other went through emotionally...watching his little brother being wheeled to the operating room twice, not knowing if he would ever come out the same way.

Enjoy life. Live Life. Love Each Other. Be Thankful.

Matthew 17:20

And He said to them, "Because of the littleness of your faith; for truly I say to you, if you have faith the size of a mustard seed, you will say to this mountain, `Move from here to there,' and it will move; and nothing will be impossible to you.

Changes.......

So summer is in full swing...almost seems as if it is over. Goes by so fast, doesn't it?? We are spending our days squeezing in appointments and our nights at football and cheering practice.

We came back from vacation to the harsh reality of Bryan putting in 72 hour work weeks and spending 14 hours a week commuting. I know we should be grateful that he has a job when alot of folks don't. Another negative of an economy like this is that prison system gets busier. Good for our wallet with the amount of overtime available, but sad in a sense that people get more and more desperate to do what they need to for their families.

We are in our own desperate situation on a few fronts. I alluded in my last post that things weren't all that great for Brigitte. Sometimes that's even hard for me to believe when she had a good night like tonight. I spent the morning in at CHB meeting with her team once again. They are planning an admission for this month....or I should say, we are hoping it happens this month.

For three long years, we have been playing the gtube-central line game. A few weeks ago, we went back to playing the GJ tube game against our better judgement. Unfortunately for Brigitte, I should have held my ground and not moved forward with it knowing it wasn't going to work out. It lasted longer than I expected, but we wound up at CHB last week having it pulled because it migrated back into her stomach. Brigitte isn't like most kids and the complex web of her intestinal organs don't make for a smooth placement in Interventional Radiology. She needs it done in the OR. We can't be going to the OR every few days or weeks to replace GJ tubes, so we made the decision to call that experiment quits. So here we are again with the whole "is she or isn't she" idea of whether or not she is in complete intestinal failure. Its a game I am not going to keep playing. Her emotional status is far more important for us to continue to experiment on a 5 year old. So, we have agreed to one last admission on this issue. The only reason I have agreed to it is that there has been alot of question over the years as to whether or not her issues are behavioral, pain, or a combination of both. This admission is hopefully going to give us some clarity on this. I say hopefully because I am totally jaded at this point. Her team is putting together a very good plan of action and I just hope that all the "to-do's" on our list are accomplished before Brigitte, her team, or myself get to frustrated and call it quits. They are anticipating this to be at least a two week admission.....and that to me means more likely than not, a month. I hope I am wrong. So wrong. The plan is to take her off of her TPN and see how she does. If her behavior escalates due to advancing gtube feeds, we know this is a problem. Then we need to find out whether or not narcotic pain medication can help us push forward. If not, we decide whether to switch to a full psychiatric admission in the psych unit of CHB...if that isn't the way to go, we finally accept that she is going to need a central line and be given IV nutrition for the rest of her life. For those of you who don't know, you can't survive forever on TPN without significant liver damage. At that point talks of liver transplants as well as transplanting intestines etc. begin. So this isn't an easy road to begin walking down on alot of levels. Never once in my life did I think I would be hoping that psych issues were a blessing...but in this scenario, you can live a long life with psych issues. "There are no blessings that can't become a disaster, and no disasters that can't become a blessing." ~~Richard Bach

So, on another side of life.....you read earlier that Bryan is spending over 86 hours a week away from the house. This leaves little time for any kind of family life. He is so exhausted on Saturdays that it takes half the day to recover and get a little bit of sleep, I am exhausted because I have been home alone doing everything by myself....and then we have Sunday and it starts all over again on Monday. One day a week to be a full family? Not acceptable. We are spending more money than we can afford in gas with Bryan going back and forth to work, and me taking Brigitte to CHB which has been roughly twice a week if not more this summer. Its been old for a while, but has just gotten that much worse this summer. Did you know that the divorce rate for parents of children with special health care needs is roughly 85% ? This is not what we want for our family. We have worked far to hard and for far to long to become a statistic. My kids have been through enough and I deal with far to much on a daily basis to add divorce to my evergrowing list of stressors. I cannot and will not let it happen. Soooooo.......we are moving. Fast. Seriously. *insert scream, sigh, whatever...here* LOL!!!


We have a found a very nice house in a north of Boston suburban home....and we think it is really going to take so much of the strain we have financially, emotionally, etc. off of our plate. I am scared, excited, anxious, nervous....umm, yeah, I'm shitting my pants. We're moving in less than three weeks. I have a child that will probably be in the hospital and the kids will be going back to school. I can do this. *again, insert cheering section and lots of positive affirmations here* Please and Thank You.

I'm sure alot of you are wondering how in the hell we are going to pull this off and get ourselves together in three weeks. One thing I have learned through this journey is that there is always going to be stress. It's a given, especially when you love and adore a child like Brigitte. I have watched that child fight when not a single one of the premier doctors at Children's Hospital thought she had any fight left in her. She's still here. Still driving me to drink on more days than I'd like to admit!!!!!! (Actually, I gave up drinking and diet pepsi, so I am a stark. raving. loony.) So how dare I sit here and say that I cannot do something. Life is hard. Some days more than others. Some hours more than most. I have watched far to many of my good friends lose their daughters in the last year. There may be a day when I am that mom......but in the meantime, my only goal is to make the most of every single day my daughter has on this earth; and make it a damn good one. Thats it. END. OF. STORY.

The Good.

Hi Everyone!

Hope this finds you all doing well. I wanted to share some recent pictures of our summer and show you how big Brigitte is getting! Tall....not wide! LOL!

We were blessed once again by my father and Robyn taking us on a vacation last week. Despite the bumps in the road we encountered while we were away, I was so thankful to just be with my family. Dad and Robyn stayed with us for 4 days, then we had the rest of the week to just be a family.

I will follow up this blog post with some more details of our vacation, and some difficult decisions we are facing regarding Brigitte's care over the rest of the summer.....but before all the sadness, I want to leave you all with some wonderful pictures of Brigitte and our family. We do try our very best to make the best of the good days when we have them as we know that they are short lived and that our future is very uncertain. One Day At A Time. Live for the Moment. Live Like You Were Dying.

You get the picture! Now here are some beauties!! Enjoy!

Shhhhh.....don't tell the doctors at CHB she was swimming! She LOVED it!!!! I so wish we had a pool or hot tub for her to go in all the time. She was like a fish!!!

Seriously????

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!

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!!

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.

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.

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.

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.

Make-A-Wish Girls Become Princess For A Day - Video - WMUR Manchester

Make-A-Wish Girls Become Princess For A Day - Video - WMUR Manchester

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.

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!!!

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!!

Breathing.....

Breathing. It's something I can't seem to do much of anymore. I am sitting here trying to fully grasp everything that has happened over the last 4 months and I truly cannot believe it.

This week was certainly no different. I am sure you have all heard about the "fight or flight response" at one time or another. My family is living in that constant state every day. I have been doing alot of reading about it as I know it must be detrimental....but what do you do about it? It’s important to learn how to recognize when your stress levels are out of control. The most dangerous thing about stress is how easily it can creep up on you. You get used to it. It starts to feels familiar – even normal. You don’t notice how much it’s affecting you, even as it takes a heavy toll. I am used to it, and have been for way to long. What is even scarier is that if I am feeling this way, how is Brigitte feeling? How are the other kids feeling about all of this?

I should let you know, that Brigitte was again rushed to Boston on Tuesday and underwent another emergency surgery. I had some trouble with her pump and some occlusion alarms in the early morning hours on Tuesday. Think like 2 or 3am. Yeah, makes sleeping impossible. I finally decided to shut the damn thing off because not only was I not sleeping, but Brigitte wasn't either. I flushed her line with saline and swore I heard a little "pop." WTF!!!! I checked her site, inspected the line and didn't see anything. I went back to bed. She woke around 7 and was crying a bit. At this point, you can imagine the chaos that takes place trying to get 4 kids up and ready for school. I got breakfast for the kids, got them all dressed and was ready for Brigitte. Let's just say her morning routine is a little less than pleasant. That's putting it mildly. She is a major witch in the morning, so I leave her for last. As I was attempting to get her dressed, I noticed that her dressing was red. At first I thought it looked like fleece stuck to her (she was wearing a fleece pajama set) but quickly realized that her PJ's weren't red and what I was looking at was clearly blood. Add to that, Jake and Sean both saw it at the same time and started freaking out. It took all I could to get them to hang up the phone fast enough as they had already dialed 91...and you know what would have happened next. I could see she wasn't actively bleeding so I knew that an ambulance ride would have actually wasted valuable time. In our town, they are not allowed to cross state lines, so we would have been taken to the local ED, stabalized, then transported to Boston. I knew that pop I thought I had heard was real and that we were already beyond the 4hr mark of blood starting to clot. So we needed to get to Boston fast. That's kind of funny, because it was rush hour traffic time, and Brenna was home sick. So she went with my dad and Brigitte and I made our way to the city.

It turns out that her line had totally blown and she was headed to the OR again. The surgery itself lasted about 3 hours. This time instead of a broviac CVL being placed, we went with a port. Although we aren't able to get the full benefits of it right now since she is on TPN 7 days a week, we are optimistic that at some time she will be able to have some days off and be deaccessed giving her the ability to bathe, swim...and just not be bothered. We are a long way from that, though.

So, as I said, we live in a constant state of "what's next?" It is becoming more and more difficult to just live normally. Clearly, this is affecting Brigitte more than anyone can imagine. She is having tremendous difficulty in school because of her anxiety. This poor child can't even wake up on a Tuesday and get excited about school and her friends because just when she thinks things are ok, she is in the hospital with a mask covering her face as she is forced into sleep to be cut open again, only to wake up with another scar and one more piece of plastic stuck inside her little body. One more thing to make her so unlike most little four year olds. She is being admitted again next week for all of her testing, and tonight I have had multiple email exchanges with her doctors who are also concerned about her emotional well-being. We have come to the conclusion that a psychological consult team will be part of every admission to deal with her ongoing anxiety. My poor baby is only four years old and will now have a TEAM of psych doctors. This just isn't right on so many levels.

I have to be honest and tell you that I am a very angry person right now. I am angry on so many levels. I am angry that this happens to Brigitte and Sean. I am angry that there isn't a damn thing I can do to make any of it go away. I am starting to get really mad at family and friends who don't realize that my life is nothing like theirs and they just don't get that. I dread the holidays and having to put on my happy face. It makes pretending all that much worse. I know a while back I promised a post on all the good things that are happening, but right now, I can't seem to find anything. I am taking a few days to sit here and feel bad for myself, my kids, my husband, my marriage. Next week, because it is Thanksgiving, I will pull myself up by my bootstraps and be happy for all that I do have in my life.....which I do know is alot. But right now, I just want to be mad.

For all my other mom friends who have children with special medical needs or worse, have lost your children. It's ok. It's ok to be mad, really mad.

What's not ok is to stay mad.

Updates

Well, things certainly have been busy around here. I honestly don't have the time or energy for a real heartfelt blog entry....but I know I owe all of you an update on how the kids are doing!!!

Sean ROCKED his surgery. I mean, truly ROCKED it!! I am beaming as I sit here and write it because I am still amazed at how amazingly strong he is. His surgery was about 4 hours long. He had a very difficult time going to sleep and really fought it. His surgeon got inside the dura and his cerebellum "popped" right up into place. He said that his post-op MRI was very deceiving for how much crowding was actually there and he definitely needed this second operation. Having known that Valium was Sean's magic drug post-op the first go-around.....we got the PACU nurses to give it to him right off the bat. We knew he was feeling pretty good when he said "Hey, is that thing (catheter) stuck in my balls again so I don't have to get up to pee?" Sean was back....as funny as ever!!! For those of you who don't know Sean personally, he is a boy of few words, but when he does speak, he usually leaves you shaking your head, laughing!! He was also started on Decadron in the OR and continued it for a week total. This helps with brain swelling and also with the junk that was in his lungs prior to surgery. He was eating and drinking immediately after surgery and had a great nights sleep. Saturday morning he was up and out of bed and already taking oral pain meds. We gave him the morning to see if he continued to do well and when his surgeon, Dr. Benjamin Warf, came in to check on him I asked if we could go home. There wasn't anything I couldn't do for him at home and lets just say that things with Brigitte were becoming a little more complicated and being home was best for everyone. Sean was discharged less than 24hrs after brain surgery and never took a dose of pain meds after leaving the hospital. He is AMAZING!!!!! He rested on Sunday and on Monday morning I had to make him come back in the house and sit on the couch. No hitting wiffle balls two days after brain surgery!!! Geeeshhh!

And then there is Brigitte. I will just say that if you looked at her today, you would say she looks probably the best she ever has. I had a doctor ask me today if she was healthy? My response; "Well, if you consider a 4yr old that is life dependant on TPN nutrition 7 days a week, has a heart defect, is immunodeficient, is in complete colonic shut down, and so on, healthy, than yes, she is healthy." It saddens me that I can honestly agree that she looks the best she has in months. It saddens me that it is a central line, TPN, and IV hydration that is keeping her alive. I think people don't get that. They see a little girl running around, yelling, playing as best she can, going to school and her brothers football games and they think "Wow, she is doing so awesome." Until you understand that if we take away the central line, the TPN, and the hydration....give her a few days and she would die from dehydration and malnutrition. So, yes, Brigitte is doing ok.

She is being admitted the week before Thanksgiving to have her manometry testing done. This will be a very difficult admission for her. We are hoping for only 3 days, but it could turn into a few days longer. She will go to the OR to have a colonoscopy, endoscopy, have probes placed in her rectum and in her gtube stoma.....she will also likely have an NG tube dropped from her nose into her stomach. She will then be attached to monitors to see what her intestinal motility looks like. She has to stay in bed while this is done, and no she cannot be sedated. Good Times. Feel free to visit and serve as a distraction. The thousands of stickers we have should come in handy, but I very well may lose my mind!!!! This testing will give us an idea of what surgical procedure may need to be done. She is still only having bowel movements every 12-14 days despite being on mega-doses of laxatives. Yes, she is still smiling!!!


So, those are the latest and greatest!! I have lots of pictures to show you of Sean, but we have been straight out and just haven't had the time to do much of anything else but auto pilot. We're getting there.

I have been thinking about another post to write soon, but I know I have alot of people reading thanks to the Thrive Blog post I did with Children's Hospital. What would you guys like to hear about?? Leave me some comments and I will try to come up with something good. I was thinking of "How to deal with family through the Holidays?" Let me know what you think!

Much Love Always!!!

Shared by a friend tonight.....

A friend shared this with me after reading my "Picture Perfect" post. It couldn't be more perfect. Enjoy and really listen to the words. Please see the post below as well if you have not already.

Picture Perfect????

If you were to drive by my house this morning when the kids were getting ready for school you would have seen a scene from a movie. Hugs and Kisses, High Fives and Good-byes. A pretty little red head with such bounce in her step carrying an umbrella while her brothers cram in beside her. One with Clark Kent glasses and a backpack almost as big as he. The other, grinning from ear to ear, wearing his Blaze jacket he earned playing on an AAU baseball team this spring. Their smiles are almost contagious. All three walking side by side in the rain, turning back every few seconds to give there momma a wave and blow a kiss goodbye.

Picture Perfect.

What you don't see on the inside of the house is the mom with tears streaming down her face and the 4year old asking "Mama, why you crying?" She cries because the picture on the outside looks so perfect and oh how she longs so badly for it to be so true.....even just for a day. She will go back up the stairs to start saline and heparin flushes, give GTube boluses to one sweet little girl and begin to prepare for major brain surgery for another sweet little boy. You also don't see that the dad hasn't been home in 3 days because he has worked 3 16hr shifts straight and stays at a relatives house close to his work so he can at least get an extra hours sleep each night rather than wasting that precious time sitting in traffic on a long commute to work. He will likely be to tired all weekend to be the dad or husband he really wants to be. His tears flow each day as well because he isn't able to tuck the kids in at night and can only text them each day to see how their day was or hear about the back handspring someone landed at practice last night.

This is just a small glimpse.

The mom and dads pain in this picture is so deep but they live in survival mode. There is no crashing because there isn't anyone to pick up the pieces. If they stop for a second and really take in the reality of their situation, surely it would break just about anyone. How can you break though when you have a family to love and care for? There are still bills that need to be paid and life has to go on. But that's just it...all this family does is exist. Existing in a world that from the outside looking in, looks as pretty as a picture. Nobody will ever understand what really goes on behind closed doors. Nor do I hope that you are ever in a position to truly understand.

All I want to do is cry and cry and cry. I can't. I do not write these things because I want your sympathy. Sympathy is the last thing I need. I write because it makes me feel better. What I really want to do is crawl under the covers and not come out for a few days...better yet, a few weeks. I do not have that luxury. I have snacks to pack, baths to give, homework to help with. I have appointments to go to, doctors to deal with, bill collectors to fight with. No matter how badly I want to break, I can't. Even if I did, then what would that say about me or my family. Then we would be the family with the two sick kids and the mother that went crazy. Its just not that easy.....and hard would be a major understatement.

I don't know what the answer is. I try to hope for the future to be better, but it truly is hard to dance through the storm when you never see any sunshine. I have to laugh at our reality sometimes, because I just don't know what to do anymore and honestly I am sick of pretending everything is great when it isn't. People ask me everyday "How is Brigitte?" My typical response is "Ummm, she's doing ok. Thanks for asking." What I would really like to say goes something like this: Actually, she's a 4 year old little girl who has spent more days in the hospital than she has in her own bed. She is not physically able to eat because her intestines are not working, so an IV in her heart is keeping her alive. Without it she would be dead. Yes, she is home from the hospital and yes, I let her go to school. That is so she can sort of be like a little girl. But most 4 year old little girls aren't eating with a Gtube in their belly or an IV in their heart. They aren't talking to surgeons about possibly needing a colostomy bag. They are running around splashing in puddles or going on playdates when mine only gets to go to PT, OT or Speech. She didn't get to got to the "friend party" at McDonalds today because the germs there could kill her. Instead she spent the day in the house driving her mother crazy because she can't do the things little girls do. She had to have two needles stuck in her legs and blood drawn from her arms twice this week along with having 3 appointments at Children's Hospital. In addition, she now has to be admitted to the hospital next week even when she isn't truly sick because her 7 year old brother has to have brain surgery and the only way she can be taken care of is by a nurse which the State of NH won't let us have because I don't "work"...so she has to be in the hospital when really she doesn't need to be. So, how is Brigitte doing? "Ummm, she's doing ok. Thanks for asking."

Here we go again....

I have been blogging alot about Brigitte lately and haven't updated all of you on Sean. Things have been very difficult for him since his surgery. He is having alot of pain in his neck, many headaches and still tingling in his arms and feet.

We have been back to see the neuro-surgeon over the last few weeks quite a few times. He has had a post-op MRI as well. Things just aren't any better than they were before the first surgery. He is waking up multiple times in the middle of the night crying and asking for his valium and oxycodone...this coming from a kid I have to chase around the house to give him medication on a regular basis. He is struggling quite a bit at school as well. I was at North School twice within an hour yesterday. Once to pick up Brenna as she wasn't feeling well, and then again to get Sean who just couldn't make it through the day.

We met with Sean's surgeon again on Monday and have decided that it is time to bite the bullet and go ahead and do a second surgery. This time he will actually have to do a duraplasty, which means his brain will be open and exposed while the doctor sews in a synthetic patch to help brain expand. It may not be as long a surgery since most of the bone has already been removed, but it will be more complex and there is more risk involved anytime the brain is manipulated. I got the call this morning and his surgery will be next Friday, October 22. His Pre-Op is scheduled for the day before.

I am so sick of all of this. Brain surgery twice in 8 weeks for one child and then almost losing another? Is this really happening? I know that it is. I think the thing that is hitting me the hardest is that I feel completely numb. I have shut off so many feelings so that nothing can hurt anymore. It is the oddest feeling in the world.

I am now trying to figure out how to manage having Sean in the hospital and be there 100% for him because he so deserves it, but also manage Brigitte's care....which nobody except me can do. On top of that Jake has his Mity Mite Superbowl the next day on the 23rd. It's just not fair. I cannot be in three places at once and so need to be. Actually, four places because Brenna needs her mommy too. How do you do this? I think there should be an unwritten rule somewhere that if you are blessed enough to be given the gift of an unhealthy child/children that you shouldn't have to worry about all the other stuff and it will just be taken care of! Yes, that was not a misprint, I do feel very blessed to have been given Brigitte and Sean. They are amazing children that have taught me what life is all about. They are MY teachers....not the other way around. I do not pretend to think this is an easy life, and there are many, many people who couldn't handle 1/10th of what we do. BUT, I really do know what matters.

My children are bringing together a community and teaching them what life is all about too. The Londonderry Wildcats,Kim Payson, and so many others have stepped forward and are helping to fill the void and take care of things that Bryan and I can't physically and financially. My children are leaving their footprints on so many people's hearts, it is truly heartwarming.

So although medically things are always in a tailspin in this house, we are getting through it with the love of family, friends and an entire community that is rallying around us. Sunday, Shory's Mexican Roadhouse in Manchester and Salem dontated $1000.00 from a fair share event to help defray some costs associated with the mini-makeover being done at the house. On Monday, Lenny and Lisa Santosuosso of Santosuosso and Son's Construction had a crew out to begin work to separate the master bedroom into two rooms that will now be for Brenna and Brigitte. Brigitte slept in her own room for the very first time in 4 years. It was bittersweet for me, but truly amazing for her. She thinks she is such a big girl now. Yesterday, Derek Wagner of Wagner Electric came out to do some electrical work in the rooms and hallway. He had read about our family and donated all of his time yesterday and completed all the work for free. Bill Mower a local plumber and friend of a friend has been over to evaluate some plumbing work that has been needed got all of his supplies donated and is going to start soon as well. Eric Buck of Pollock Land Planning was also out yesterday and has a grand plan of constructing a new deck and patio area that is safe for Brigitte to finally be able to play outside. I also found out that Steve Babine from Landscape FX will be starting a fall cleanup next week. From what I am hearing there are many other people that have stepped up to help and are committed to getting this project completed. I would urge anyone in the Londonderry area that needs to have anything done in their house, yard, etc. to use these companies. There is something to be said of people who donate their own time and materials to do good for others. I know that none of them want or expect any thanks and are doing what they feel is right in their hearts, but wouldn't it be nice to reward them with patronage for a job well done!!

I am headed to Boston with Brigitte this afternoon for a few appointments. She is seeing her GI doctor and the nutritionist. We are still having major issues with her intestines and has lost about a pound in the last week. Back to Boston again tomorrow for her follow-up with her General Surgeon as well.

I will continue to keep you all posted with news on Sean, Brigitte, and of course the house. Thank you as always for keeping our family in your thoughts and prayers. We feel it and appreciate it.

If you are looking for more information as to how you can help with the makeover, please feel free to contact Kim Payson at bkpayson@hotmail.com My understanding is that the need is for materials right now. If you know anyone who can help, it is much appreciated!!



It takes a village to raise a child~~~~African Proverb

Much Love Always,

Trust....

Is trust a good thing or a bad thing??

I used to believe 100% that it was an amazing thing!! Today, I'm not so sure. Tonight, its bittersweet.

I am in a rocking chair beside Brigitte's bed with a tiny little light so I can see what I am writing. The monitors are all on. Beep, Beep, Beep....the slow, steady hum of her heart. She's stable right now. Lets hope it stays that way.

Today marked day 14 of Brigitte not having a bowel movement. Keep in mind she takes a double dose of adult Miralax, gets an ex-lax square every other day, and also got a few doses of Milk of Mag. We got NOTHING!! Today her doctor decided it was time for a cleanout. Typically this is done inpatient over a few days in the hospital. This time, its being done at home.

This is the email I got today:

We also don’t typically do this at home. But I know you will be with her and know B very well and we are trying to avoid hospitalization more so for B than for your typical patient. Look out for distension, pain, vomiting, in which case we can ‘t do this at home.

I think this makes sense:
(1) Golytely st at 50ml/hour for 2 hours, then 75ml/hour for two hours, and if doing well, go to 100ml/hour. If seems she is barely holding on but not looking worrisome, stay at 75ml/hour. Max is 2L.
(2) chemistry check tomorrow (chem10) to make sure electrolytes are not altered with the treatment
(3) she can have clear fluids by mouth during this time, but best not to have solids or full liquids. She will certainly loose some weight...but that is to be expected.
(3) Hydration 250ml NS three times per week IV.

What does this have to do with trust you say? Well, I am flattered that her doctors trust me so much. It is by far one of the greatest compliments I ever get....aside from those from other parents. I have learned how to do ALL of her care as well, if not better than some of the nurses we have encountered. I know lab values, I can read an EKG, I can deliver meds and suction, I can put her on oxygen, I can give her shots, and infusions. You name it, I can do it. All I have is a HS diploma. I have learned my daughter's conditions and can recite her entire 4 year history much like I can my own social security number.

This is a letter I wrote to a cardiac surgeon in Miami:

Dear Dr. Burke,

My name is Shannon Kaiser. I have a 3year old daughter, Brigitte 8/18/06, who is currently a patient at Children's Hospital Boston. Brigitte's primary diagnosis is Noonan Syndrome, amongst a very long list of other issues. In 11/06 she had pulmonary valve dilation in the cath lab and only had mild relief of the RVOT. On 12/08/06 she had extensive pulmonary valvuloplasty whereby they opened the RVOT and reconstructed the valve with pericardial patches. She also had her main proximal pulmonary artery dilated. After surgery she had a residual gradient with no pulmonary regurgitation in the setting of a very thickened and restrictive right ventricle. This surgery was performed by Dr. Emile Bacha.

Present day she has severe pulmonary regurgitation. The right ventricular function is normal with a moderately dilated right ventricular chamber. She also has an ASD.

Brigitte has had a very extensive medical course. She has MAJOR feeding issues and has had a LADD's procedure for intestinal malrotation 03/07, she has a Gtube 03/07, and has also had a fundoplication 11/07. All of these were performed by Dr. Jay Wilson. As of 09/09 she has had a Broviac CVL placed to initiate TPN due to failure to thrive. Despite being on TPN 3x a week in addition to a very complicated feeding regimen which also consists of 5 60cc bolus' of Enlive Apple Juice daily, and 12 hour continuous overnight feeds of Boost Kids Essentials 1.5 at a rate of 40cc/hr....Brigitte continues to lose weight. In fact, she saw her GI doctor for follow up on 12/18 and was 12.3k and was also seen on 12/30, weighed on the same scale and was down to 11.3k. There is no explanation for this. Her labwork is totally normal. She has been worked up for metabolic issues, thyroid issues, and diabetes. Dr. K(GI) did order a CXR and it was noted that there was change since her previous CXR and was found to have some significant prominence in her pulmonary vasculature.

The reason that I am writing to you is I believe that Brigitte's weight issues are directly being impacted by the insufficiency in her heart. Her respiration's have increased over the last few weeks. Previously she has been in the low-mid 20's and she has been consistent in the mid 30's lately. She is acting pretty normal though. She seems a bit more dusky around her mouth and does get a bit tired after she has been moving around for a bit. She is not losing fluids through diarrhea, nor is she vomiting. Her reflux is completely under control at this point.

I understand that historically children with isolated PS usually do not need intervention until well into their adult years, if at all, but Brigitte has never played by the rules. We have done everything we possibly can to explain away her weight issues. I should add that at this time she doesn't have any oral aversions and will eat by mouth often throughout the day. Every time I consult with another specialist, they all say it "sounds cardiac related." We are on the verge of adding in more TPN to her regimen and I feel as if we are trading one set of problems for another. It doesn't make sense to me to pump her up with nutrition if her heart could be forcing her to burn it all off. Brigitte has enough medical issues, that I don't want to add liver damage to the list due to longterm PN use. My husband and I are well aware of the risks involved in possibly replacing her pulmonary valve and/or closing her ASD. We feel at this time, given the situation, it may be an option that is needed to help take the strain off her heart and allow her to grow.

We have spent well over 300 nights at Children's in the last 3 years. She has had over 25 major surgical procedures, and countless other studies including, triple scopes, MRI's (never a cardiac). She has been worked up for pulmonary lymphangiectasia, celiac disease, hirschprungs disease, amongst other things. She has been severely truamatized and needs to have her ECHO's done typically with Ketamine/Versed. She is extremely fearful of even a simple examination. I share this just so you are aware of how complicated her sweet little life has been, mostly all related to her inability to gain any weight. I also have 3 other children. Brenna is 8, Jake is 7, and Sean is 6. They are all healthy. You may also be interested to know that my father has Hypertrophic Cardiomyopathy and I have Restrictive Cardiomyopathy and Mild Pulmonary Hypertension.

I am hoping that you may be able to help us,or at least give me peace of mind that I have explored every avenue for Brigitte and we are or have done everything possible regarding her cardiac issues. We are very willing to travel to Miami to see you.

Thank you in advance for taking the time to read this. I look forward to hearing from you.

Regards,

Shannon Kaiser



Here is part of his response:

Dear Shannon,
Thanks for the email, I'm sorry to hear Brigitte has had such a difficult course. Your summary is excellent, you may have missed your calling in medicine. I can imagine how traumatic this has been for you and your family. We have three little girls, and it would break my heart to watch one of them go through what you described. If I may, I would like to show your letter to my CICU director, he has a good feel for babies who fail to thrive after heart surgery, and I value his opinion.

Sincerely,
Redmond Burke



While of course it is very flattering to hear things like this from doctors......it puts an unbeliveable amount of pressure on me as well. Kind of like when she was rushed by ambulance a few weeks ago....and I thought she was constipated and dehydrated. Of course as that morning went on, I realized quickly that things were not as simple as I may have thought.....but nonetheless, I should have brought her to the ED that Tuesday night, not Wednesday morning.

I am not blaming myself at all. Looking back, I know I would have done things the same way. But, you can bet your butt the next time she is vomitting up green bile, we will be going in for an eval instead of waiting it out. You just learn to do things differently.

Tonight, I am learning how to do things differently. I am learning how to do a hospital procedure in my house, by myself, with 3 other children who still have to go to football, get homework done, take baths, make lunches for field trips, run to the pharmacy to get medications.......and, maybe eat!! Bryan is working overtime again!!!

It is becoming more and more apparent that her doctors are valuing my need to be at home with my other children, but are also entrusting her life to me as well. That may sound like a no-brainer......but, the pressure is indescribable. At least in the hospital I have nurses checking on her every hour. So if something happens, its not my fault. Tonight, if something happens, it is my fault. How do you live with that for the rest of your life. Again, you try to make quality of life decisions for 3 older children, but put another's at risk....or you make one childs needs more important and sacrifice 3 others. I can't win.

So today just reinforces why I hate Tuesdays. I have a feeling there are going to end up being a few more days of the week I come to despise as well.


“Trust yourself. You know more than you think you do.” Dr. Spock