This tube thing is pretty scary. I remember sitting next to her on the hospital bed and the speech pathologist, nurse and doctor were explaining about how they were going to need to put in the ng tube. And then they mentioned the g tube. I remember crying pretty hysterically. I didn't really take in anything that they were saying all the way. I know that I asked all of the correct questions but it did not sink in right away.
It is pretty interesting the things that went through my head. Questions that I wanted to ask but just whirled around in my head. Questions like...can she go on roller coasters anymore? Can she swing? Can she go down the slide? Can she still walk with it in? Can she wear chapstick? Can she swim? Can she have a bath?
I did ask the important things. Thing like...how do we eat dinner when she can't? How do we keep her from putting food into her mouth? How does it stay in? How do we get it back in if it comes out? How do we tape it? How do we put the formula in? How do we take care of her now?
I remember that I was crying at 4 am after she had vomited once again and one of the nurses was sitting in a chair in front of me soothing me and telling me that it was all going to be ok. I remember that he said to me, you'll see in a few weeks you will be able to feed her with one hand and cook dinner with the other...You're going to do fine. I remember that I really didn't believe him...AT ALL.
Well the other day, I was feeding her breakfast and had the syringe in one hand and I was blogging with the other. Today, we were driving home from rollercoastering (one of Hailey's very favorite things to do) and I was sitting in the seat behind her in the car, feeding her with one hand and facebooking with the other.
We have gone to the park and she swings just fine. She also goes down the slide fine as well. She can still ride her bike and rollercoastering was just as exciting as it has ever been. So giving her a bath is risky because she swallows the water...she can still shower. I've read that she can still swim even when the g tube is in. Her lips still work and she still loves chapstick.
She is still her and who knew that I could multitask this well! Her behaviors are definitely more challenging and I burn out faster than I did before but we are getting used to things.
Hopefully when she gets the g tube, she will be able to go back to some sort of school program again and my burn outs will get farther and farther apart. But really...It is true, We really are doing just fine.
And our biggest silliest questions have all been slowly answered. But most of all, the good news is that she can still rollercoaster!
Saturday, October 29, 2011
Friday, October 28, 2011
It's the little things
Like the fact that Hailey hasn't puked in 36 hours. We have finally determined that she has trouble with yogurt (well probably most dairy products). It took us a week to determine what it was. Of course it was that little bit of yogurt that we had started to feed her. Only 3 teaspoons a day to get her swallowing muscles working again. It's the little things.
Like the fact that ending dinner five minutes earlier makes a happy night. We have finally decided that dinner ends on a sour note a lot of nights because we are all chatting and having fun...so much fun that we fail to notice that the girls have just lost interest. We kept saying "why does dinner keep ending in chaos?". And then we realized, just end it a few minutes earlier & it ends in peace and happiness!! It's the little things.
Sometimes we are so busy thinking of the big solutions that we forget to try the easiest solution first...The little things.
Like the fact that ending dinner five minutes earlier makes a happy night. We have finally decided that dinner ends on a sour note a lot of nights because we are all chatting and having fun...so much fun that we fail to notice that the girls have just lost interest. We kept saying "why does dinner keep ending in chaos?". And then we realized, just end it a few minutes earlier & it ends in peace and happiness!! It's the little things.
Sometimes we are so busy thinking of the big solutions that we forget to try the easiest solution first...The little things.
Friday, October 21, 2011
NO THANK YOU!
A couple of years ago, Hubby and I were discussing having another baby. I never really wanted to have any children after I was 35 so we didn't have a very large window to decide. Life was thrown at us pretty fast over the last couple of years and we never really made a definite decision.
I'm 36 now and way past our personal deadline for having another one and all I can say is THANK GOD!
I love my children so much and I really enjoy being a mommy. Little newborns are so cute and I really loved the newborn and toddler stage. I definitely miss it.
But the fact is that my oldest is getting his license in the next few months, my ten year old's medical and behavioral stuff is out of control right now and my four year old is struggling to find her spot in the line for attention. I am pretty sure another baby would shove me over the edge. One infant, one in elementary school, a medically and emotionally fragile ten year old, and one headed into college...NO THANK YOU!
Even just the thought brings me back to the two days last week that we were in the emergency room to have the ten year old's ng tube reinserted. The ten year old was screaming and clawing and signing "drive home"...The four year old was jumping about and dancing and screaming in her own way...The nurses were giving us dirty looks...And Mommy was literally sitting in a chair with her head in her hands. This went on for FOUR hours, two days IN A ROW!! I can't imagine if I had an infant with me as well!
So even though I know a baby is a blessing and all, I am thanking God for the fact that he did not bless me with another one!
Happy Friday!
Monday, October 17, 2011
This is a hard road to travel...but it's my road!
I accept that most people are trying to be nice to me when they give me advice or “the nod”. You know “the nod”. The one that says, oh man, your life sucks. I feel so sorry for you. I pity you.
I hate “the nod”.
I know that they are trying to be nice but really, I don’t want your pity. My life doesn’t suck and I really don’t want people to feel sorry for me. I have a great life. And for all of the obstacles that my children and I have been thrown in our lives, we are all pretty well adjusted and happy.
Here is what happened last month when Hailey got out of the hospital…
I was dropping Aubrey off at preschool. I have to bring Hailey now to drop her off because Hailey can’t go to school right now…to make matters worse, I have to have Hailey in the wheelchair because they don’t allow siblings into the classroom and they are making a special exception for me. The problem is that the wheelchair ramp is located on the opposite side of the building than the main door that Aubrey must go into to shake the teacher’s hand in order to start the day. So I’ve been walking Aubrey to the front door and then after she is in the class, I have to go around the back and bang on the door at the wheelchair ramp (because of course it is f*ing locked everyday!!), then someone opens the door and Hailey and I go in to sign Aubrey in. I have asked several times if there is anyway that they could just keep the wheelchair door unlocked during this time but nooooooo…So we go through this during drop off.
So most of the preschoolers stare at her because of the tube now so I have gotten down on my knees and said hello to them and explained to them that it helps her to eat right now. It is all very matter of fact and the four year olds accept it and today (day 2 of this routine) only 2 stared instead of all 20 of them…(definite improvement!).
So I am on my knees next to her telling a little boy about the tube and his mom says, “wow this cold really knocked her out!”…and I said “yah, we were in the hospital for 6 days”…and she says, “yah, my three got it too”…and I said, “oh that’s too bad, I hope they are feeling better”…and she says, “oh yah, it only lasted 2 days”…and I said, “that’s great. I have to go because I have to feed her every 2 & ½ hours so I pretty much feed her and then turn around and feed her again”…and she says, (yes she really says this…quite literally…and I am still giggling because of the absurdity of it) “I know, it is so hard to be a mom, I am so busy all of the time, I barely have enough time to get my nails done most of the time”.
What I wanted to say was…really??? Are you crazy? I don’t have enough time to sleep. I ate dinner last night at 10 pm because I was feeding her during our family dinner time. I haven’t eaten anything all day because I don’t really want to eat in front of her. I just spent 5 nights in a hospital watching my daughter go through hell…AND YOU DON’T HAVE TIME TO GET YOUR NAILS DONE?????
Now, I know that she wasn’t being cruel or mean. I know that she was trying to be nice and to her a life with 3 normal developing children ages 11, 8 and 4 is complicated and hard. I understand that I haven’t walked in her shoes or anything.
That is why I just said “oh yah” in response and then giggled my way back to the car. I don’t want her to have to walk in my shoes and to tell you the truth, I don’t really want to walk in hers.
My life is hard. This is a hard road to travel but it’s my road. That doesn’t mean I can’t laugh or get angry when people say really silly things to me.
I hate “the nod”.
I know that they are trying to be nice but really, I don’t want your pity. My life doesn’t suck and I really don’t want people to feel sorry for me. I have a great life. And for all of the obstacles that my children and I have been thrown in our lives, we are all pretty well adjusted and happy.
Here is what happened last month when Hailey got out of the hospital…
I was dropping Aubrey off at preschool. I have to bring Hailey now to drop her off because Hailey can’t go to school right now…to make matters worse, I have to have Hailey in the wheelchair because they don’t allow siblings into the classroom and they are making a special exception for me. The problem is that the wheelchair ramp is located on the opposite side of the building than the main door that Aubrey must go into to shake the teacher’s hand in order to start the day. So I’ve been walking Aubrey to the front door and then after she is in the class, I have to go around the back and bang on the door at the wheelchair ramp (because of course it is f*ing locked everyday!!), then someone opens the door and Hailey and I go in to sign Aubrey in. I have asked several times if there is anyway that they could just keep the wheelchair door unlocked during this time but nooooooo…So we go through this during drop off.
So most of the preschoolers stare at her because of the tube now so I have gotten down on my knees and said hello to them and explained to them that it helps her to eat right now. It is all very matter of fact and the four year olds accept it and today (day 2 of this routine) only 2 stared instead of all 20 of them…(definite improvement!).
So I am on my knees next to her telling a little boy about the tube and his mom says, “wow this cold really knocked her out!”…and I said “yah, we were in the hospital for 6 days”…and she says, “yah, my three got it too”…and I said, “oh that’s too bad, I hope they are feeling better”…and she says, “oh yah, it only lasted 2 days”…and I said, “that’s great. I have to go because I have to feed her every 2 & ½ hours so I pretty much feed her and then turn around and feed her again”…and she says, (yes she really says this…quite literally…and I am still giggling because of the absurdity of it) “I know, it is so hard to be a mom, I am so busy all of the time, I barely have enough time to get my nails done most of the time”.
What I wanted to say was…really??? Are you crazy? I don’t have enough time to sleep. I ate dinner last night at 10 pm because I was feeding her during our family dinner time. I haven’t eaten anything all day because I don’t really want to eat in front of her. I just spent 5 nights in a hospital watching my daughter go through hell…AND YOU DON’T HAVE TIME TO GET YOUR NAILS DONE?????
Now, I know that she wasn’t being cruel or mean. I know that she was trying to be nice and to her a life with 3 normal developing children ages 11, 8 and 4 is complicated and hard. I understand that I haven’t walked in her shoes or anything.
That is why I just said “oh yah” in response and then giggled my way back to the car. I don’t want her to have to walk in my shoes and to tell you the truth, I don’t really want to walk in hers.
My life is hard. This is a hard road to travel but it’s my road. That doesn’t mean I can’t laugh or get angry when people say really silly things to me.
Saturday, October 15, 2011
My Dark Cloud
We have a lot of sadness in our lives right now.
As most of you know, Hailey has been struggling with dysphasia (which causes an inability to swallow) after a botox treatment to decrease her drooling. She was hospitalized for six days last month and ultimately came home with an ng tube (a feeding tube in her nose). When we came home from the hospital, I thought (even though I didn't say it out loud) things can't really get any worse.
Well they did.
Three days after she was discharged from the hospital, my best friend was in a horrific car accident with her two youngest children. She died on impact. Her two young children were pulled from the car by a passerby before the car went up in flames. They were in the hospital for over a week (and thankfully are on the road to recovery).
I keep thinking that if I just keep putting one foot in front of the other that I'll stop crying and stop being so sad. It's not like the sadness is overtaking me or anything. I have too much to do to be engulfed in it entirely. But it is there, like a cloud...all the time. It follows me around.
My daughter is ten years old and although she has a genetic disorder and a multitude of cognitive and physical problems because of the disorder, she has always been medically healthy. Besides a few ear infections and normal childhood illnesses, she has been the picture of health. Doctors have all marveled over it. I have always held onto it.
But now she is not medically healthy. She cannot swallow or eat. The speech therapist told me yesterday that she did aspirate (food into her lungs) yesterday during the swallow study so we needed to watch for respiratory distress...Seriously??? She is going to most likely be getting a g tube (a tube directly into her stomach through her belly...not in her nose...YES ladies and gentlemen, surgically placed and permanent for all intensive purposes).
Did I mention that she can't go to school...And she can't take any of her behavioral medications until we determine if this swallowing problem is going to improve or not? So not only do we have a tube in her nose and she can't eat and she can't go to school, she also has huge fits (bigger than before) that include ripping her clothes off, hitting herself in the head and throwing EVERYTHING!...OH and there are no breaks while she is at school (did I already say that?)...so this is a 24 hour thing for our family (minus the 6 days a month that she is at her daddy's).
Oh and my best friend is DEAD...never to return. Although I keep thinking that I should just call her. I mean, I didn't see her dead so it can't really be true right? I wonder when it sinks in that she's not coming back. I feel like the children are handling her passing better than I am. Aubrey is making her pictures to send her in heaven attached to balloons...and I can't even accept that she is not really a phone call away.
So see, there is a lot of sadness around here. I think that can probably explain my writer's block. How the only thing that I want to write about is sorrow and sadness but how I feel like if I put it down on paper for everyone to see and read that it makes me weaker. Like I can't handle it...and I can't in a way but I must handle it. I don't have a choice. Falling apart is not really an option. But how do I keep myself all the way together?
As most of you know, Hailey has been struggling with dysphasia (which causes an inability to swallow) after a botox treatment to decrease her drooling. She was hospitalized for six days last month and ultimately came home with an ng tube (a feeding tube in her nose). When we came home from the hospital, I thought (even though I didn't say it out loud) things can't really get any worse.
Well they did.
Three days after she was discharged from the hospital, my best friend was in a horrific car accident with her two youngest children. She died on impact. Her two young children were pulled from the car by a passerby before the car went up in flames. They were in the hospital for over a week (and thankfully are on the road to recovery).
I keep thinking that if I just keep putting one foot in front of the other that I'll stop crying and stop being so sad. It's not like the sadness is overtaking me or anything. I have too much to do to be engulfed in it entirely. But it is there, like a cloud...all the time. It follows me around.
My daughter is ten years old and although she has a genetic disorder and a multitude of cognitive and physical problems because of the disorder, she has always been medically healthy. Besides a few ear infections and normal childhood illnesses, she has been the picture of health. Doctors have all marveled over it. I have always held onto it.
But now she is not medically healthy. She cannot swallow or eat. The speech therapist told me yesterday that she did aspirate (food into her lungs) yesterday during the swallow study so we needed to watch for respiratory distress...Seriously??? She is going to most likely be getting a g tube (a tube directly into her stomach through her belly...not in her nose...YES ladies and gentlemen, surgically placed and permanent for all intensive purposes).
Did I mention that she can't go to school...And she can't take any of her behavioral medications until we determine if this swallowing problem is going to improve or not? So not only do we have a tube in her nose and she can't eat and she can't go to school, she also has huge fits (bigger than before) that include ripping her clothes off, hitting herself in the head and throwing EVERYTHING!...OH and there are no breaks while she is at school (did I already say that?)...so this is a 24 hour thing for our family (minus the 6 days a month that she is at her daddy's).
Oh and my best friend is DEAD...never to return. Although I keep thinking that I should just call her. I mean, I didn't see her dead so it can't really be true right? I wonder when it sinks in that she's not coming back. I feel like the children are handling her passing better than I am. Aubrey is making her pictures to send her in heaven attached to balloons...and I can't even accept that she is not really a phone call away.
So see, there is a lot of sadness around here. I think that can probably explain my writer's block. How the only thing that I want to write about is sorrow and sadness but how I feel like if I put it down on paper for everyone to see and read that it makes me weaker. Like I can't handle it...and I can't in a way but I must handle it. I don't have a choice. Falling apart is not really an option. But how do I keep myself all the way together?
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