Monday, June 14, 2010
Wednesday, June 9, 2010
Fear......
Sorry, again for the delays in posting. I really am going to try to be better about it. Right now, I have posters to print, a house to clean, laundry to fold, and bags to pack. I have to get all this done in the next 36hours or so....as life as we know it begins back again at our second home, Boston Children's Hospital. So, having said all that, like I said, I am trying to get better about blogging, but I don't know when to fit it in.
Oh, I glazed over the "back at CHB again part"....yes, that is my brain trying to ignore it. Can't though....its happening. Friday morning we have to be in bright and early. She is having another MRI of her brain. Due to some recent developments...well, not so recent, just recent that someone has decided to listen to that "crazy mother with the 4 kids!!" They have a bed booked for her to spend the night due to the length of the scan and the amount of images they want to get. It seems as if "we may have greatly underestimated the damage to her brain" (neuro's words, not mine)...and he wants this done ASAP. I might also add that he is working her up with a strong suspicion for Mitochondrial Disease and the possiblity that she may have suffered a stroke. Hence the title of this entry...FEAR.
I am usually the one giving all the comforting words to all the family and friends when they hear the scary words that often come out of my mouth about Brigitte. Don't GOOGLE it. Don't read about it. Don't worry, she'll be fine.
I'm still doing all of these things, except the one person who is usually telling me not to do those things, the one person who keeps this semi-calm person from getting themselves worked up before we know answers, the one person who always tells me "Don't worry until I get worried," is now worried himself. So the fear sets in.
I think people often forget that Brigitte's illnesses....many of which we don't know the full extent of yet, are life-threatening. Those that aren't, have the potential to be life-altering. We live in a constant state of "What if?" and "When?" Just when we think that things settle down and we can begin to plan, they change again. Often these fears go unspoken. Nobody wants to ask the questions. They just look at you, smile and say "well, at least she's cute!" This is less than helpful. We don't get statistics or guesses because there isn't another Brigitte to compare to. She is her own little mess.
So it leaves us worrying. The more and more people diagnose her with things, the more fear I have. I'd be lying if I said I wasn't afraid she might die. She might. I will bring her back into that hospital on Friday morning, let them intubate her for the "I can't even count that high" time.....and we will sit and wait. Hoping she doesn't come out with vocal cord damage ( a risk of intubation....its gotta happen sometime, right?) Hoping she tolerates the procedure. Hoping we don't get devastating news on Tuesday when we go back for the results.
We live in a constant state of fear. Some days are easier than others. Most suck. Some may say this is all very dramatic. Might be. I can tell you that those who think that, have never endured their child being sick. Really sick. It doesn't leave you. You will never understand it no matter how hard you try.
Sean and I went on his Field Trip to Squam Lake last week. The pollen had been terrible in this area for a few days, and then the smoke from the fires in Quebec moved in. We ended up having to leave early because he was having alot of trouble breathing. He's my asthma and allergy guy for those of you who don't know. Anyways, his teacher had the kids write Thank You's to the chaperones. This was Sean's:
Dear Mom,
Thank you for coming on my field trip with me. The show was cool. That was the best field trip ever. I wish we could stay for the rest of it. But I was sick but not that sick like Brigitte.
Your son Sean
He is only 6 years old. This is not the first time he has written about Brigitte and how sick she is. He obsesses about dying. Where people are buried. Does it hurt? He often says "When Brigitte dies, will I get to see her again?" He thinks she's going to die. This breaks my heart. This makes me terribly afraid. I am often more afraid of how this all affects them more than it does Brigitte. Physical scars are one thing, but emotional ones are completely different. You should see him with her. He literally smothers her each time he hugs her. It's as if he is afraid that he can't get enough of her. I feel that way sometimes too. Look for a post soon of some pictures we had done on Brigge's trip. Your heart will smile when you see how much love these kids all have for each other!
Don't get me wrong, I don't let this fear consume me. We make the most of every single day. We enjoy the good when it is good....and always say that the worst could be worse. We are not sitting by letting all the good pass us by. Its just that the bad never leaves us.......sometimes this is a blessing. It allows us to really soak up the good and appreciate it.
So what is the moral of this story? I don't really know. I guess it is that writing helps with our fears. If we keep them all bottled up inside they grow and grow. It helps me to write all of my crazy stuff here for all of you to read. It helps Sean tell a story about how he is really feeling. I think you can learn alot about people and what they write. We are all afraid of something. What are you afraid of? Do you talk about it? Do you write it down?
You might want to. It really helps.
Oh, I glazed over the "back at CHB again part"....yes, that is my brain trying to ignore it. Can't though....its happening. Friday morning we have to be in bright and early. She is having another MRI of her brain. Due to some recent developments...well, not so recent, just recent that someone has decided to listen to that "crazy mother with the 4 kids!!" They have a bed booked for her to spend the night due to the length of the scan and the amount of images they want to get. It seems as if "we may have greatly underestimated the damage to her brain" (neuro's words, not mine)...and he wants this done ASAP. I might also add that he is working her up with a strong suspicion for Mitochondrial Disease and the possiblity that she may have suffered a stroke. Hence the title of this entry...FEAR.
I am usually the one giving all the comforting words to all the family and friends when they hear the scary words that often come out of my mouth about Brigitte. Don't GOOGLE it. Don't read about it. Don't worry, she'll be fine.
I'm still doing all of these things, except the one person who is usually telling me not to do those things, the one person who keeps this semi-calm person from getting themselves worked up before we know answers, the one person who always tells me "Don't worry until I get worried," is now worried himself. So the fear sets in.
I think people often forget that Brigitte's illnesses....many of which we don't know the full extent of yet, are life-threatening. Those that aren't, have the potential to be life-altering. We live in a constant state of "What if?" and "When?" Just when we think that things settle down and we can begin to plan, they change again. Often these fears go unspoken. Nobody wants to ask the questions. They just look at you, smile and say "well, at least she's cute!" This is less than helpful. We don't get statistics or guesses because there isn't another Brigitte to compare to. She is her own little mess.
So it leaves us worrying. The more and more people diagnose her with things, the more fear I have. I'd be lying if I said I wasn't afraid she might die. She might. I will bring her back into that hospital on Friday morning, let them intubate her for the "I can't even count that high" time.....and we will sit and wait. Hoping she doesn't come out with vocal cord damage ( a risk of intubation....its gotta happen sometime, right?) Hoping she tolerates the procedure. Hoping we don't get devastating news on Tuesday when we go back for the results.
We live in a constant state of fear. Some days are easier than others. Most suck. Some may say this is all very dramatic. Might be. I can tell you that those who think that, have never endured their child being sick. Really sick. It doesn't leave you. You will never understand it no matter how hard you try.
Sean and I went on his Field Trip to Squam Lake last week. The pollen had been terrible in this area for a few days, and then the smoke from the fires in Quebec moved in. We ended up having to leave early because he was having alot of trouble breathing. He's my asthma and allergy guy for those of you who don't know. Anyways, his teacher had the kids write Thank You's to the chaperones. This was Sean's:
Dear Mom,
Thank you for coming on my field trip with me. The show was cool. That was the best field trip ever. I wish we could stay for the rest of it. But I was sick but not that sick like Brigitte.
Your son Sean
He is only 6 years old. This is not the first time he has written about Brigitte and how sick she is. He obsesses about dying. Where people are buried. Does it hurt? He often says "When Brigitte dies, will I get to see her again?" He thinks she's going to die. This breaks my heart. This makes me terribly afraid. I am often more afraid of how this all affects them more than it does Brigitte. Physical scars are one thing, but emotional ones are completely different. You should see him with her. He literally smothers her each time he hugs her. It's as if he is afraid that he can't get enough of her. I feel that way sometimes too. Look for a post soon of some pictures we had done on Brigge's trip. Your heart will smile when you see how much love these kids all have for each other!
Don't get me wrong, I don't let this fear consume me. We make the most of every single day. We enjoy the good when it is good....and always say that the worst could be worse. We are not sitting by letting all the good pass us by. Its just that the bad never leaves us.......sometimes this is a blessing. It allows us to really soak up the good and appreciate it.
So what is the moral of this story? I don't really know. I guess it is that writing helps with our fears. If we keep them all bottled up inside they grow and grow. It helps me to write all of my crazy stuff here for all of you to read. It helps Sean tell a story about how he is really feeling. I think you can learn alot about people and what they write. We are all afraid of something. What are you afraid of? Do you talk about it? Do you write it down?
You might want to. It really helps.
Wednesday, May 19, 2010
Reality.....
So, did you figure out where she was happiest?? Yep, it was in the pool. Which is where we spent a good deal of our time. That was awesome.
Todays lesson is all about reality.
How so you say?? Well, perfect example happened yesterday. Brigitte gets home PT and OT services since her medical fragility has not allowed her to be in a clinic setting. Thankfully, she has progressed to a point that we are making the transition to outpatient therapies in July. This will allow for more and/or different therapies to take place. It is also an opportunity to take Brigge out of her comfort zone. Currently, she feels very safe at school and very safe at home. We venture to new places and well.....all hell breaks loose. Which is why Disney was a partial disaster! She will have an opportunity to take place in pool therapy and also some animal integrated therapy in which both will help with the sensory issues we are seeing so many problems with.
Part of the problem has been brought on by us. Yes, I said us. Her family. The very people who love and care for her so tremendously. We have created a bit of a brat. I do remember making this prediction a long time ago.....it has come to fruition ten-fold. We have done everything for her. We also laugh at her bad behavior. I will share a Disney story here.
On our last night before leaving we decided that we had had enough of buffets, characters etc. We spent the afternoon at the pool and were sick of eating "pool food." We were craving good food, but were to exhausted to trek on out and see what we could find. We decided to settle at Il Mulino at the Swan. Easy Peasy. Pasta and wine does wonders for everyone, right?? What kids can't find something they like at an Italian restaurant. It was perfect. Add to the fact that it was EXPENSIVE...that meant there was no need for reservations!!! Most families on property were not eating here, but at the cafeteria. For those of you who know my children, we can really take them everywhere. They are very well behaved and we are always complimented on their behavior. So who would figure this would be a problem?? Not I. Not Bryan. It was apparent that the hostess felt otherwise. Lets just say she wasn't thrilled to see us and it was even more apparent by the table she chose to seat us at. I will add that we were not the only family in the place.....but we were the only family with more than 2 kids. Things started out relatively well. Bread was on the table, kids had drinks, dinner was ordered. No complaints. All I was thinking "I'll show that hostess." Ok, Ok.... I was really thinking "hmmmpfh....I'll show that bitch!!!" Well, Brigitte was about to do it for me. At the top of her lungs Brigitte proved the hostess completely right by screaming "FUCK!"...repeatedly. Yeah, good times. As mortified as I was, all I could do was laugh. The kids laughed even harder. I think Bryan was choking on his breadstick. Good Times.
We are part of the problem. A big part. Brigitte's therapist brought me back to reality yesterday. I was telling him how demanding Brigitte can be. She had me thinking the other day "I can so see why parents shake their children." She drives me to the edge of every cliff, every single day. The kids get sick of hearing her and give her what she wants. Worse though, all of us have given her everything she wants because the majority of her life has been so difficult. We have all done what we could to help her. Make life a little bit easier.....on all of us, honestly. So there I was, feeling responsible for partly creating this monster!! For allowing it to go on even though I fully knew a long time ago what the implications would be. Jon, her PT, reminded me "Shannon, she almost died.....multiple times. None of you know what her future holds and you all do what you can for her to make her difficult life a little bit easier and love her as much as you can. There is no fault in that."
He is absolutely right. I know this. I have thought about it constantly. It is what keeps me up at night. I know the kids think about it. Its hard to know what Bryan thinks about it. If the gray in his hair and his blood sugar told the story....I'm sure it would say it is his biggest worry too. The problem is, nobody talks about it. It is the big white elephant in every room.
So the moral of the story is, don't hide behind your reality.
Here is a picture of our Disney reality. I LOVE it. It is one of my favorites!!
Todays lesson is all about reality.
How so you say?? Well, perfect example happened yesterday. Brigitte gets home PT and OT services since her medical fragility has not allowed her to be in a clinic setting. Thankfully, she has progressed to a point that we are making the transition to outpatient therapies in July. This will allow for more and/or different therapies to take place. It is also an opportunity to take Brigge out of her comfort zone. Currently, she feels very safe at school and very safe at home. We venture to new places and well.....all hell breaks loose. Which is why Disney was a partial disaster! She will have an opportunity to take place in pool therapy and also some animal integrated therapy in which both will help with the sensory issues we are seeing so many problems with.
Part of the problem has been brought on by us. Yes, I said us. Her family. The very people who love and care for her so tremendously. We have created a bit of a brat. I do remember making this prediction a long time ago.....it has come to fruition ten-fold. We have done everything for her. We also laugh at her bad behavior. I will share a Disney story here.
On our last night before leaving we decided that we had had enough of buffets, characters etc. We spent the afternoon at the pool and were sick of eating "pool food." We were craving good food, but were to exhausted to trek on out and see what we could find. We decided to settle at Il Mulino at the Swan. Easy Peasy. Pasta and wine does wonders for everyone, right?? What kids can't find something they like at an Italian restaurant. It was perfect. Add to the fact that it was EXPENSIVE...that meant there was no need for reservations!!! Most families on property were not eating here, but at the cafeteria. For those of you who know my children, we can really take them everywhere. They are very well behaved and we are always complimented on their behavior. So who would figure this would be a problem?? Not I. Not Bryan. It was apparent that the hostess felt otherwise. Lets just say she wasn't thrilled to see us and it was even more apparent by the table she chose to seat us at. I will add that we were not the only family in the place.....but we were the only family with more than 2 kids. Things started out relatively well. Bread was on the table, kids had drinks, dinner was ordered. No complaints. All I was thinking "I'll show that hostess." Ok, Ok.... I was really thinking "hmmmpfh....I'll show that bitch!!!" Well, Brigitte was about to do it for me. At the top of her lungs Brigitte proved the hostess completely right by screaming "FUCK!"...repeatedly. Yeah, good times. As mortified as I was, all I could do was laugh. The kids laughed even harder. I think Bryan was choking on his breadstick. Good Times.
We are part of the problem. A big part. Brigitte's therapist brought me back to reality yesterday. I was telling him how demanding Brigitte can be. She had me thinking the other day "I can so see why parents shake their children." She drives me to the edge of every cliff, every single day. The kids get sick of hearing her and give her what she wants. Worse though, all of us have given her everything she wants because the majority of her life has been so difficult. We have all done what we could to help her. Make life a little bit easier.....on all of us, honestly. So there I was, feeling responsible for partly creating this monster!! For allowing it to go on even though I fully knew a long time ago what the implications would be. Jon, her PT, reminded me "Shannon, she almost died.....multiple times. None of you know what her future holds and you all do what you can for her to make her difficult life a little bit easier and love her as much as you can. There is no fault in that."
He is absolutely right. I know this. I have thought about it constantly. It is what keeps me up at night. I know the kids think about it. Its hard to know what Bryan thinks about it. If the gray in his hair and his blood sugar told the story....I'm sure it would say it is his biggest worry too. The problem is, nobody talks about it. It is the big white elephant in every room.
So the moral of the story is, don't hide behind your reality.
Here is a picture of our Disney reality. I LOVE it. It is one of my favorites!!
Monday, May 17, 2010
Honesty.......
Todays lesson is all about honesty. So with that being said, it has always been my intention that this blog will tell it all like it is, no mincing words or fake pictures!! Just real life. Our life. Which hasn't been all that easy on so many levels. I promise to not sugarcoat things.....or people. Keep in mind though, these are my feelings. MINE. Not anyone elses. I will not apologize for them. They may change with the weather. I may feel something today, and tomorrow could be just the opposite. I can guarantee that someone will read into what I say too literally and take offense. Just remember this blog is not about you...it is about me and about Brigitte and how I am surviving trying to raise my 3 older kids and keep her alive all at the same time. If you feel "guilty" about something I may say or do...thats on you!! I might even lose a few friends or even family members along the way. Again, nothing new...it happens. I'm over it. I'm done apologizing for my life and how I live it. I've done it for far to long...and I always seem to be the one apologizing even when I haven't done anything wrong. Not doing it anymore!! I have a job to do. It's mothering my four children the best way I see fit. Trust me....sometimes I really suck at it. I fed them cake for breakfast every day last week because I didn't have the energy to go to the grocery store. Your probably wondering what they ate for dinner then?!?!?!? That would be McDonalds, Burger King, Wendy's, and Dunkin Donuts. I did manage to get a salad in them on Friday at the Pizza Wars. BONUS!!! Me, I don't eat that stuff. Lg. Diet Coke was sufficient for my 3 squares a day. I went shopping yesterday, so don't go reporting me yet. Last nights dinner was steak tips, zuchini and summer squash and they even ate rice cakes for snack. Brigitte's even had about 6 strawberries today!!! Whoot!!! Whoot!!!! When I'm on, I'm on!! When I'm off, I'm waaaaay off. They'll live. I hope. I'm sure there will come a day when they are forwarding me the bills from their therapist. It all gets blamed on the mother anyways. I will feel ok telling them "I did the best I could and I loved you," even if I was feeding you cake for a week!
My intention when I started this blog a few weeks back was to update you live from Disney. Welllllll, we all know that didn't happen for a myriad of reasons. The biggest being the computer issues we had, but the other being that this "wish trip" wasn't all we thought it would be....or all I thought it would be. I am settling in back at home....slowly. I think they call it Post Disney Depression...even though when we were in Disney, I wanted nothing more than to be back home. GO FIGURE!!!!
I spent months planning for this trip. That was probably my biggest mistake. I had heard so many wonderful things that happened for Wish Families on their trip.....none of which happened for us. I don't want this to come across as complaining. Really, I'm not. Just consider it a lesson for all who go after us. Wish family or not. Let it happen.
Brigitte had been having alot of issues prior to us leaving. Things we have always seen, but haven't been able to deal with because all of her medical issues have been front and center for so long. These are behavioral in nature, and things that we won't be able to fix..... but will just make tolerable. She is having a hard time with noise. Loud and soft. She hates crowds. She bangs her head on the floor and hits herself now. Lots of "hand flapping" with over stimulation. Word retrieval....bigtime problem!!! Had we been focusing on these issues all along, maybe the trip wouldn't have been so bad....maybe we wouldn't have encouraged it to be a wish at all. Not beating myself up about it. Again, I do the best I can!! We are at a point where not alot can be done medically unless we make some major, major decisions...so lets focus on the things we can help right now. Neuro issues taking center stage! For those of you following over from the CarePage, if your wondering where her weight is, its down.....waaaaay down. 11.9 kilos at last glance. Ummmmmm...haven't we been there for about 2 years??? Yeah, I thought so too!! I know, I know. She'll get there. She will. When she is ready!
In a nutshell, despite all of the "issues" we experienced.....we really did enjoy ourselves. After figuring out what worked and what didn't. There was more of the "didn'ts" than the "dids"....but when it did, it really did!! Those are the memories I will keep in my heart. The others, not to be forgotten, just hidden away with alot of the other unpleasantries that come with "Saving Brigitte."
More updates to come. Soon. I PROMISE!!! It just has to wait until my dog stops puking and having diarrhea. Thats what I woke up to at 5am. If its not the kids its the dog. If its not the dog, its the husband.
I leave you with a few pictures...you can see where she was happiest!!
My intention when I started this blog a few weeks back was to update you live from Disney. Welllllll, we all know that didn't happen for a myriad of reasons. The biggest being the computer issues we had, but the other being that this "wish trip" wasn't all we thought it would be....or all I thought it would be. I am settling in back at home....slowly. I think they call it Post Disney Depression...even though when we were in Disney, I wanted nothing more than to be back home. GO FIGURE!!!!
I spent months planning for this trip. That was probably my biggest mistake. I had heard so many wonderful things that happened for Wish Families on their trip.....none of which happened for us. I don't want this to come across as complaining. Really, I'm not. Just consider it a lesson for all who go after us. Wish family or not. Let it happen.
Brigitte had been having alot of issues prior to us leaving. Things we have always seen, but haven't been able to deal with because all of her medical issues have been front and center for so long. These are behavioral in nature, and things that we won't be able to fix..... but will just make tolerable. She is having a hard time with noise. Loud and soft. She hates crowds. She bangs her head on the floor and hits herself now. Lots of "hand flapping" with over stimulation. Word retrieval....bigtime problem!!! Had we been focusing on these issues all along, maybe the trip wouldn't have been so bad....maybe we wouldn't have encouraged it to be a wish at all. Not beating myself up about it. Again, I do the best I can!! We are at a point where not alot can be done medically unless we make some major, major decisions...so lets focus on the things we can help right now. Neuro issues taking center stage! For those of you following over from the CarePage, if your wondering where her weight is, its down.....waaaaay down. 11.9 kilos at last glance. Ummmmmm...haven't we been there for about 2 years??? Yeah, I thought so too!! I know, I know. She'll get there. She will. When she is ready!
In a nutshell, despite all of the "issues" we experienced.....we really did enjoy ourselves. After figuring out what worked and what didn't. There was more of the "didn'ts" than the "dids"....but when it did, it really did!! Those are the memories I will keep in my heart. The others, not to be forgotten, just hidden away with alot of the other unpleasantries that come with "Saving Brigitte."
More updates to come. Soon. I PROMISE!!! It just has to wait until my dog stops puking and having diarrhea. Thats what I woke up to at 5am. If its not the kids its the dog. If its not the dog, its the husband.
I leave you with a few pictures...you can see where she was happiest!!
Thursday, April 29, 2010
Christmas in April????
We decided to go ahead and do a "down day" today. I think we all woke up and just needed a day to recharge our batteries. I don't think any of us have realized how much the toll has taken on us in the last 4 years. We are exhausted!!! Mentally and physically.
So we hit the pool again today around 11am. Again, the day was perfect with weather in the low 80's and almost no humidity. That's all about to change tomorrow though. Around 2pm Brigitte started to get pretty miserable again, so I decided to take her and Brenna back to the room, give her a bath and get her in for a nap. The best of intentions!!! No nap, but she did get a nice bath to get the bottle of sunscreen off of her. Since Monday, I have become a sunscreen fanatic. The kids run when they see the bottle come out of the bag!!! Cracks me up!!!
Bryan just came back with the boys and they got baths. I enjoyed about an hour on the deck watching the giraffes, ostriches and whatever else is out there!!! Bryan even brought back a Banana Cabana for me.....HOLLA!!!!!
Tonight we are headed over to Give Kids the World for Christmas!!! Yep, Santa Claus and all. I hear it even snows!!!! The kids get christmas presents and we get a full turkey dinner with all the trimmings!! Mmmmmmmmm Goooood!!!
Tomorrow ends the wish portion of our trip. We will be up early to return the rental car and get another one...then might try to hit Universal and Islands of Adventure. The kids are dying to do the Hard Rock Cafe for dinner, and you know I'm not complainin'!!!! Then we will check into the Dolphin for a couple of nights before moving to our final resting place of The Swan for the last 3 nights........Ahhhhhhh. We have our photo shoot for The Littlest Hero's Project bright and early on Monday morning too. We heard from Paris today....and really cannot wait to meet her!!!!
So we hit the pool again today around 11am. Again, the day was perfect with weather in the low 80's and almost no humidity. That's all about to change tomorrow though. Around 2pm Brigitte started to get pretty miserable again, so I decided to take her and Brenna back to the room, give her a bath and get her in for a nap. The best of intentions!!! No nap, but she did get a nice bath to get the bottle of sunscreen off of her. Since Monday, I have become a sunscreen fanatic. The kids run when they see the bottle come out of the bag!!! Cracks me up!!!
Bryan just came back with the boys and they got baths. I enjoyed about an hour on the deck watching the giraffes, ostriches and whatever else is out there!!! Bryan even brought back a Banana Cabana for me.....HOLLA!!!!!
Tonight we are headed over to Give Kids the World for Christmas!!! Yep, Santa Claus and all. I hear it even snows!!!! The kids get christmas presents and we get a full turkey dinner with all the trimmings!! Mmmmmmmmm Goooood!!!
Tomorrow ends the wish portion of our trip. We will be up early to return the rental car and get another one...then might try to hit Universal and Islands of Adventure. The kids are dying to do the Hard Rock Cafe for dinner, and you know I'm not complainin'!!!! Then we will check into the Dolphin for a couple of nights before moving to our final resting place of The Swan for the last 3 nights........Ahhhhhhh. We have our photo shoot for The Littlest Hero's Project bright and early on Monday morning too. We heard from Paris today....and really cannot wait to meet her!!!!
Wednesday, April 28, 2010
Wishes Do Come True......
We got the computer up and running, but only have internet access tonight....not sure if we will have it when we switch hotels on Friday.
The kids are having an amazing time. To say that Brigitte is overwhelmed, would be a major understatement. She is enamored by all the characters, but petrified of them at the same time. We had a scare the other day, and in all honestly, I was convinced we were going to end up needing to take her to the ER and get some fluids in her. We had spent the day by the pool (high 80's) and it just really took its toll on her, despite my best efforts to keep her hydrated. She has not had the best sleep since we got down here either and I don't think that helped the situation. The kids were even noticing and wondering if we should stay in the hotel for the day....we just bolused her every 30min and around 4pm, she finally perked up and was back to her normal self with good urine output! Crisis averted.....PHEW!!!!!
Thankfully, the weather has cooperated and has been in the high 70's with low humidity today and tomorrow....the upcoming weekend, not so much!!! We are planning some down time when the heat picks up again!
Enjoy some pictures of our days!!!!! The pictures are backwards....and honestly, I am waaaaay to tired to fix it tonight!! Will update again when we can!!! Just know we are truly enjoying ourselves!!!
The kids are having an amazing time. To say that Brigitte is overwhelmed, would be a major understatement. She is enamored by all the characters, but petrified of them at the same time. We had a scare the other day, and in all honestly, I was convinced we were going to end up needing to take her to the ER and get some fluids in her. We had spent the day by the pool (high 80's) and it just really took its toll on her, despite my best efforts to keep her hydrated. She has not had the best sleep since we got down here either and I don't think that helped the situation. The kids were even noticing and wondering if we should stay in the hotel for the day....we just bolused her every 30min and around 4pm, she finally perked up and was back to her normal self with good urine output! Crisis averted.....PHEW!!!!!
Thankfully, the weather has cooperated and has been in the high 70's with low humidity today and tomorrow....the upcoming weekend, not so much!!! We are planning some down time when the heat picks up again!
Enjoy some pictures of our days!!!!! The pictures are backwards....and honestly, I am waaaaay to tired to fix it tonight!! Will update again when we can!!! Just know we are truly enjoying ourselves!!!
Monday, April 26, 2010
Houston We Have A Problem....
Have no fear all.....the problem is not with the trip, but with my computer. It crashed. We have it semi-fixed, and are hoping to have it up later. BUT....we don't have wireless in the hotel. I am getting my 5 min in the access center and time is a tickin'!!!!
We are having a great time. Brigitte slept the entire flight!!! We hit Animal Kingdom yesterday. Pool day today. Weather has been AMAZING!!
Tomorrow is our BIG Magic Kingdom Day!! We will be up bright and early in order to get to MK to try and BEG someone to let Brigitte open the park with the characters. We'll see!!! She has been a bit hesitant with the characters, but is warming up, slowly and surely!!!
Sorry for the quick post, but wanted you all to know we really are having a GREAT time!!!
Will try to update as soon as I can!!!
Love
We are having a great time. Brigitte slept the entire flight!!! We hit Animal Kingdom yesterday. Pool day today. Weather has been AMAZING!!
Tomorrow is our BIG Magic Kingdom Day!! We will be up bright and early in order to get to MK to try and BEG someone to let Brigitte open the park with the characters. We'll see!!! She has been a bit hesitant with the characters, but is warming up, slowly and surely!!!
Sorry for the quick post, but wanted you all to know we really are having a GREAT time!!!
Will try to update as soon as I can!!!
Love
Thursday, April 22, 2010
We've Come a Long Way Baby....
Brigitte Erica Kaiser was born on August, 18,2006 to proud mom and dad, Shannon and Bryan Kaiser. She was greeted by her big sister, Brenna, and brothers, Jake and Sean.
Life was a fight before she even took her first breath....which didn't come until she was 5days old.
Brigitte was born at 36weeks, with bi-lateral pleural effusions, multiple cardiac defects, and a host of other problems which would later on bring a diagnosis of Noonan Syndrome.
In her short life so far, she has undergone multiple surgeries, including open heart surgery at the age of 4 months. This would prove to be the easiest of all her problems. Who would have ever imagined.
I will go into more detail in a few weeks about Brigitte's amazing story of survival and how I continue to push on "Saving Brigitte."
We are leaving this weekend for Brigitte's trip to Disney World courtesy of the Make a Wish Foundation of New Hampshire. We are thrilled to have been given this opportunity and hope you follow along as we document her wish come true!!!!
Moving forward to a new location.....Hoping you'll make the move with us.
Hi Everyone,
I am going to try to merge over Brigitte's Carepage to this location. I am hoping to be able to start this tonight.......and if everything goes smoothly, then I will likely try to keep you all updated "live" each night during Brigge's Make A Wish trip!! So, please bear with me......we'll get through this together. Let me know what you think about the blog!!!
Subscribe to:
Posts (Atom)