aka: Abby.
That's what the kid has been today. Crazy.
I have no idea what in the world is going on in that little girls brain, but oh my gosh. I am ready to tie myself to some railroad tracks. It has to be quieter than this house.
She has fussed and cried all day over everything. It's time to eat. Abby cries. Let's work on taking Christmas down. Abby cries. Let's do laundry. Abby cries. Let's just sit in the chair and rock a while. Abby cries.
I am not a saint and all this crying is driving me crazy. Admittedly, it's not a very long drive. I end of feeling terrible because I want to feel sorry for her. I am concerned some thing's wrong with her, but at the end of the day I mostly feel frustrated. There are no nice words for days like this. I don't feel good about any of it.
Day's like today make me wonder where God is more than any other day. I understand that people get sick. I understand that bad things happen. I don't understand this screaming child. Why doesn't He help her? Why doesn't He help me help her?
As I was writing the last paragraph, I stopped to check on her (crying again). Her entire pacifier was stuck in her mouth. I pulled it out, but there was blood in her mouth. When we looked closely we noticed her tooth was cracked. I called the Emergency room, but all they could do was treat for pain. I gave her the max dose of Motrin and a little ativan and thankfully she fell asleep. I'll have to find a dentist tomorrow.
Ugh! All the frustration I felt from having a fussy child all day transferred to frustration over yet another problem to deal with. I definitely feel bad for Abby. On top of feeling bad all day, she's hurt now. The poor girl just can't catch a break.
I'm going to bed needing a better day tomorrow. I was trying to commit to blogging every day in January. If I was in my normal pattern, this day would have been a line or two in a post. I wanted to keep it real, so there it is. We'll see if writing every day is a good thing or not :/
Monday, January 2, 2012
Sunday, January 1, 2012
2012
Finally. We made it into a new year. I'm not even a little bit sorry to say good bye to 2011.
Difficult would be a kind word for our year. Even though we carry all that happened last year to the new year with us, I am optimistic. I hope Abby would be able to return to school soon. A few mornings a week would be great! She doesn't have much energy, so I don't expect a lot. We are only 6 weeks away from her being out of school for an entire year. :(
I had a wonderful visit with my Florida BFF and her family. It was great to spend the week after Christmas with her. I needed it. The girls did great and we had some fun! Abby still struggles with too much activity, but we were able to take her out a few days.
We went bowling one day, which was a little sad for me. It's Abby's favorite thing to do and she was so excited to go. She didn't really have the energy to do what she normally does. She usually walks in her walker and throws her little hand up to push the ball, but she couldn't do it. She stayed in her wheelchair, quietly taking her turn and watching others take theirs. I ached for another loss in her life. But even as I wished for her to be the way she was, I felt gratefulness.
I was so thankful for every day I didn't feel like loading the walker in to the car, but did anyway. I was thankful for each time the girls wanted to go bowling and I was way too tired, but I did it anyway. I looked at her so tiny and pale last week and was so thankful that we had given her what we could when she was able.
Life is unpredictable. Never in a million years could I have imagined what our life is now. We lived each day. Not because we were fearful of missing something, but simply because this is life and living is what we do with it. It helps to have lived it as fully as possible. Even though I'm sad that it's not the same, when she could do it, I didn't miss one single step in a bowling ally (profound---right? lol).
So that's the attitude I hope I'm carrying in to 2012. I will do all that I can, as much as I can and be grateful for what is. I am going to try very hard to not feel so sad for what's gone and embrace what is. We made it. All six of us lived through the whole year. I honestly wasn't sure that would be the case. Now we can look forward to a better year. No matter what it holds, at least we are all together.
God is good and I can't wait to see where He leads our family this year.
Difficult would be a kind word for our year. Even though we carry all that happened last year to the new year with us, I am optimistic. I hope Abby would be able to return to school soon. A few mornings a week would be great! She doesn't have much energy, so I don't expect a lot. We are only 6 weeks away from her being out of school for an entire year. :(
I had a wonderful visit with my Florida BFF and her family. It was great to spend the week after Christmas with her. I needed it. The girls did great and we had some fun! Abby still struggles with too much activity, but we were able to take her out a few days.
We went bowling one day, which was a little sad for me. It's Abby's favorite thing to do and she was so excited to go. She didn't really have the energy to do what she normally does. She usually walks in her walker and throws her little hand up to push the ball, but she couldn't do it. She stayed in her wheelchair, quietly taking her turn and watching others take theirs. I ached for another loss in her life. But even as I wished for her to be the way she was, I felt gratefulness.
I was so thankful for every day I didn't feel like loading the walker in to the car, but did anyway. I was thankful for each time the girls wanted to go bowling and I was way too tired, but I did it anyway. I looked at her so tiny and pale last week and was so thankful that we had given her what we could when she was able.
Life is unpredictable. Never in a million years could I have imagined what our life is now. We lived each day. Not because we were fearful of missing something, but simply because this is life and living is what we do with it. It helps to have lived it as fully as possible. Even though I'm sad that it's not the same, when she could do it, I didn't miss one single step in a bowling ally (profound---right? lol).
So that's the attitude I hope I'm carrying in to 2012. I will do all that I can, as much as I can and be grateful for what is. I am going to try very hard to not feel so sad for what's gone and embrace what is. We made it. All six of us lived through the whole year. I honestly wasn't sure that would be the case. Now we can look forward to a better year. No matter what it holds, at least we are all together.
God is good and I can't wait to see where He leads our family this year.
Thursday, December 22, 2011
Answers
I'm sorry for my long break. It's been hard for me to think of what to say. I feel like you've all heard it all before. She's still sick, I'm still tired and trying to make sense of it all.
We did get some answers from Abby's recent testing. We fed her six hours through her stomach as sensors recorded the contractions of her intestines and belly. She also had an endoscopy. That showed that all of the previous ulcers had healed (Thank God!!). Her NISSEN looked good and although she had some minor irritation in the part of the intestines right where the stomach empties, she looked generally good. They took several biopsies, but that is a HUGE improvement from last time.
As far as the other test goes, it could have showed that she had weak contractions of the intestines that didn't push food through effectively or possibly uncoordinated contractions that were equally ineffective. What she had was very long periods of inactivity (which explained the swelling and pooling of food we see) but when it did work, it was fairly coordinated and likely strong enough. That led to one very unpleasant answer. This is neurological.
We didn't want it to be that. Her brain is simply not communicating with her belly consistently. That is why she has long periods of not moving food through. Then when she does send the signals, it seems to know what to do. The Doctor said that it's a part of her autonomic nervous system that controls it, and there is nothing we can do. We are going to try to come up with a combination of medicines to make her less nauseous. She also got a new G-J tube before we left.
When she left the hospital, she was so sick and pale. She wretched and gagged. We went to Virginia for the weekend to have Christmas with my family (the first time in many years). I was so excited, but Abby was so sick that it was hard. I wasn't sure why she was having such a consistently hard time.
When we got home, I called the Dr. about Abby. I was having an extremely difficult time getting her feedings in her. She had formula in her stomach--which shouldn't be there and needed frequent venting and constant nausea medicines. I still couldn't get her comfortable. She looked awful. The agreed to take a look at the tube placement. We went back to the hospital on Wednesday. Her J-tubing had looped in her stomach irritating it. It also wasn't far enough into the small intestines allowing her food to back up in her stomach. They were able to reposition the tube. She felt so much better. She's still sick, but not even close to what we were dealing with. That was definitely another answer. I was so scared that she was just suddenly worse and there was nothing we could do for her.
Emily has had several seizures in the last week. One as soon as we got to Virginia and sat down to lunch with my family. She had 3 yesterday. One of them lasted about 4 minutes with her hands thrashing around and her head turned to the left. It was the first one I've seen like that. I think we may need to adjust her medicines.
Christmas is only 3 days away. I can't wait. I'm so excited to relax and do something normal. I can't even tell you how happy I am to think about sitting with my kids as they slowly open presents. I used to worry so much about what I would give kids that couldn't do what others do.
This year, I've had a really hard time picking presents for them. They are so much older now, and it was hard to buy for them. And I didn't care. I didn't get cards out, but that's okay too. What I will do is sit with my kids and watch their little hands tear paper. I will think about a baby born more than 2000 years ago. The child that came so that I can be sure that no matter what we face, our hope is in Him.
Merry, Merry Christmas, my friends. I pray that each of you holds in your heart only what is important as we celebrate the birth of our Lord.
We did get some answers from Abby's recent testing. We fed her six hours through her stomach as sensors recorded the contractions of her intestines and belly. She also had an endoscopy. That showed that all of the previous ulcers had healed (Thank God!!). Her NISSEN looked good and although she had some minor irritation in the part of the intestines right where the stomach empties, she looked generally good. They took several biopsies, but that is a HUGE improvement from last time.
As far as the other test goes, it could have showed that she had weak contractions of the intestines that didn't push food through effectively or possibly uncoordinated contractions that were equally ineffective. What she had was very long periods of inactivity (which explained the swelling and pooling of food we see) but when it did work, it was fairly coordinated and likely strong enough. That led to one very unpleasant answer. This is neurological.
We didn't want it to be that. Her brain is simply not communicating with her belly consistently. That is why she has long periods of not moving food through. Then when she does send the signals, it seems to know what to do. The Doctor said that it's a part of her autonomic nervous system that controls it, and there is nothing we can do. We are going to try to come up with a combination of medicines to make her less nauseous. She also got a new G-J tube before we left.
When she left the hospital, she was so sick and pale. She wretched and gagged. We went to Virginia for the weekend to have Christmas with my family (the first time in many years). I was so excited, but Abby was so sick that it was hard. I wasn't sure why she was having such a consistently hard time.
When we got home, I called the Dr. about Abby. I was having an extremely difficult time getting her feedings in her. She had formula in her stomach--which shouldn't be there and needed frequent venting and constant nausea medicines. I still couldn't get her comfortable. She looked awful. The agreed to take a look at the tube placement. We went back to the hospital on Wednesday. Her J-tubing had looped in her stomach irritating it. It also wasn't far enough into the small intestines allowing her food to back up in her stomach. They were able to reposition the tube. She felt so much better. She's still sick, but not even close to what we were dealing with. That was definitely another answer. I was so scared that she was just suddenly worse and there was nothing we could do for her.
Emily has had several seizures in the last week. One as soon as we got to Virginia and sat down to lunch with my family. She had 3 yesterday. One of them lasted about 4 minutes with her hands thrashing around and her head turned to the left. It was the first one I've seen like that. I think we may need to adjust her medicines.
Christmas is only 3 days away. I can't wait. I'm so excited to relax and do something normal. I can't even tell you how happy I am to think about sitting with my kids as they slowly open presents. I used to worry so much about what I would give kids that couldn't do what others do.
This year, I've had a really hard time picking presents for them. They are so much older now, and it was hard to buy for them. And I didn't care. I didn't get cards out, but that's okay too. What I will do is sit with my kids and watch their little hands tear paper. I will think about a baby born more than 2000 years ago. The child that came so that I can be sure that no matter what we face, our hope is in Him.
Merry, Merry Christmas, my friends. I pray that each of you holds in your heart only what is important as we celebrate the birth of our Lord.
Sunday, December 4, 2011
Random Stuff
Yay! Finally, Christmas lights shine throughout our house. That's a huge accomplishement--trust me! It's my favorite time of year. Now we even have the cold to go with the season. It's much colder than I remembered and bundling kids into coats and wheelchairs isn't exactly easy, but it's sweet none-the-less. I'm doing everything in my power to just enjoy this time and not worry, but that's not easy either.
My tree... I love blue!
~I took Abby for a gastric emptying study Thursday. Sounds fun, right? I've been dreading it for many reasons. First, she hasn't had anything on her belly for months now and this test required using the g-tube. Second, it's long. Four hours long. The first hour Abby had to lay flat under and x-ray machine relatively still. Then, she could get in her chair, and have x-rays every hour for the next 3 hours.
She was a trooper. It wasn't nearly as horrible as I expected. I think it will show what we already know--her belly doesn't work. We put 2 ounces in and it didn't seem to go anywhere fast. I couldn't tell for sure, but it seemed to change very slowly.
~She will be admitted to the hospital overnight December 14th for a specialized test that will show more about the way her intestines contract and food moves through. She will get a new g-j tube then and also have an endoscopy. We are really praying that we are able to understand what's going on with her enough to help her be more comfortable.
~She's been having a lot of belly pain lately. I'm not sure why. Her x-ray showed what it always shows. "Moderately dilated bowel with no apparent obstruction." It's very difficult to focus on the good things in life when she's so sick.
~We took the girls to the library today and then to dinner Saturday night. It's the first time we've taken them out in a while. We went to Golden Coral--before any of you throw up, it's Emily's favorite place to eat. She is all about a buffet! Abby used to love it too. She kicked and got all excited when we told her we were going, but when we were there, she just seemed sick. She acted like she wanted to eat, but couldn't even think about tasting food. I still think it's sad. I miss her eating with us.
~The nutritionist we saw gave me information on a blended diet for post-NISSEN, g-tube fed kids. It was supposed to reduce nausea (in the study it did an average of 76%). It's formula based with stage 2 baby foods, infant cereal and I added her pro-biotics. It has to go in the stomach and not the j-tube, but I decided to try it. I gave her 15cc (about 2 teaspoons) yesterday. BIG mistake. HUGE! Oh my, that poor girl was sick as a dog. I tried to pull it back out, but she gagged for almost an hour. In the end, that 15cc meant she lost about 90cc of fluids. Right now, that's a big deal for her.
~I'm tired of talking about sick bellies. I write it because I want to remember what we went through, and because people ask me about Abby a lot. Every time I sit down at the computer, I wish there was something else to say, but there isn't. This is what we do right now.
~I've been trying to put into words what all of this has done to/taught me spiritually this year. As I write, I find there are no words. Every minute of the day is filled with different all consuming emotions. Sometimes I am angry--just so angry that I have to wonder how long I will have with her. Sometimes I am so sad and hurt for her, and for our family. Most of the time I feel quiet--and if you know me, you know how different that is! There are no adequate words for what I see everyday or the way that feels.
~In January, they will be 14. Fourteen years of laughing and loving--heartache and sorrow, fear and uncertainty; woven intricately into one beautifully terrifying fabric. We are each wrapped in it, even clinging to it. It's all we know.
~I am learning to understand this journey of faith. Trusting what I can not see this year has been process of daily (sometimes moment to moment) conscious decisions to believe. In my heart of hearts I always do. I just have to remember that we are not alone, and however the Lord chooses to lead, we will follow.
My tree... I love blue!
~I took Abby for a gastric emptying study Thursday. Sounds fun, right? I've been dreading it for many reasons. First, she hasn't had anything on her belly for months now and this test required using the g-tube. Second, it's long. Four hours long. The first hour Abby had to lay flat under and x-ray machine relatively still. Then, she could get in her chair, and have x-rays every hour for the next 3 hours.
She was a trooper. It wasn't nearly as horrible as I expected. I think it will show what we already know--her belly doesn't work. We put 2 ounces in and it didn't seem to go anywhere fast. I couldn't tell for sure, but it seemed to change very slowly.
~She will be admitted to the hospital overnight December 14th for a specialized test that will show more about the way her intestines contract and food moves through. She will get a new g-j tube then and also have an endoscopy. We are really praying that we are able to understand what's going on with her enough to help her be more comfortable.
 |
| Abby, feeling a little better one day :) |
~We took the girls to the library today and then to dinner Saturday night. It's the first time we've taken them out in a while. We went to Golden Coral--before any of you throw up, it's Emily's favorite place to eat. She is all about a buffet! Abby used to love it too. She kicked and got all excited when we told her we were going, but when we were there, she just seemed sick. She acted like she wanted to eat, but couldn't even think about tasting food. I still think it's sad. I miss her eating with us.
~The nutritionist we saw gave me information on a blended diet for post-NISSEN, g-tube fed kids. It was supposed to reduce nausea (in the study it did an average of 76%). It's formula based with stage 2 baby foods, infant cereal and I added her pro-biotics. It has to go in the stomach and not the j-tube, but I decided to try it. I gave her 15cc (about 2 teaspoons) yesterday. BIG mistake. HUGE! Oh my, that poor girl was sick as a dog. I tried to pull it back out, but she gagged for almost an hour. In the end, that 15cc meant she lost about 90cc of fluids. Right now, that's a big deal for her.
~I'm tired of talking about sick bellies. I write it because I want to remember what we went through, and because people ask me about Abby a lot. Every time I sit down at the computer, I wish there was something else to say, but there isn't. This is what we do right now.
~I've been trying to put into words what all of this has done to/taught me spiritually this year. As I write, I find there are no words. Every minute of the day is filled with different all consuming emotions. Sometimes I am angry--just so angry that I have to wonder how long I will have with her. Sometimes I am so sad and hurt for her, and for our family. Most of the time I feel quiet--and if you know me, you know how different that is! There are no adequate words for what I see everyday or the way that feels.
~In January, they will be 14. Fourteen years of laughing and loving--heartache and sorrow, fear and uncertainty; woven intricately into one beautifully terrifying fabric. We are each wrapped in it, even clinging to it. It's all we know.
~I am learning to understand this journey of faith. Trusting what I can not see this year has been process of daily (sometimes moment to moment) conscious decisions to believe. In my heart of hearts I always do. I just have to remember that we are not alone, and however the Lord chooses to lead, we will follow.
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