I'm trying to upload more today. So hopefully there will be more pictures of us soon.
Hopefully!?
Tuesday, January 26, 2010
Friday, January 22, 2010
Tender Hearts
Today I was sitting here thinking. I haven't had a lot of time to sit and think since we've come home. It's been quite busy and sometimes stressful. But I can't help but think . . . . . . how blessed I am to be a mother. I have 2 beautiful children that mean the world to me. It's amazing how much your love grows when you realize that these beautiful children are yours to teach, nurture, love, and help grow.
At times I just sit and hold Symi. Just looking at her and thinking how lucky I am, we are, that she's here with us. That we are able to have her for 1 more day. To love, hold, kiss, and find the sweet joys in a day.
She is improving. It's so wonderful to see! She struggles with sleep. Which means we do too. But I love that she's home with us. That she's giggling. Smiling. And jabbering up a storm! She'll light up a room with her cute smile. Her round little face is just so contagious when she jabbers at you and wants you to pay attention to just her. Well it's irresistible.
At times I just sit and hold Symi. Just looking at her and thinking how lucky I am, we are, that she's here with us. That we are able to have her for 1 more day. To love, hold, kiss, and find the sweet joys in a day.
She is improving. It's so wonderful to see! She struggles with sleep. Which means we do too. But I love that she's home with us. That she's giggling. Smiling. And jabbering up a storm! She'll light up a room with her cute smile. Her round little face is just so contagious when she jabbers at you and wants you to pay attention to just her. Well it's irresistible.
Thursday, January 21, 2010
Remember
I received this email today. It is so amazing. Beautiful. Touching. It's changed my perspective on so many things. I loved it and wanted to share.
When I get up in the morning, I sit on the side of my bed and say, God, if I don't get anything else done today, I want to know You more and love You better. God didn't put me on earth just to fulfill a to-do list. He's more interested in what I am than what I do. That's why we're called human beings, not human doings.
You will enjoy the new insights that Rick Warren has, with his wife now having cancer, and him having 'wealth' from the book sales.
This is an absolutely incredible short interview with Rick Warren , 'Purpose Driven Life ' author and pastor of Saddleback Church in California ..
In the interview by Paul Bradshaw with Rick Warren , Rick said:
People ask me, What is the purpose of life?
And I respond: In a nutshell, life is preparation for eternity. We were not made to last forever, and God wants us to be with Him in Heaven. One day my heart is going to stop, and that will be the end of my body -- but not the end of me.
I may live 60 to 100 years on earth, but I am going to spend trillions of years in eternity. This is the warm-up act - the dress rehearsal. God wants us to practice on earth what we will do forever in eternity...
We were made by God and for God, and until you figure that out, life isn't going to make sense.
Life is a series of problems: Either you are in one now, you're just coming out of one, or you're getting ready to go into another one. The reason for this is that God is more interested in your character than your comfort; God is more interested in making your life holy than He is in making your life happy. We can be reasonably happy here on earth, but that's not the goal of life. The goal is to grow in character, in Christ likeness.
This past year has been the greatest year of my life but also the toughest, with my wife, Kay , getting cancer. I used to think that life was hills and valleys - you go through a dark time, then you go to the mountaintop, back and forth. I don't believe that anymore.
Rather than life being hills and valleys, I believe that it's kind of like two rails on a railroad track, and at all times you have something good and something bad in your life.
No matter how good things are in your life, there is always something bad that needs to be worked on. And no matter how bad things are in your life, there is always something good you can thank God for.
You can focus on your purposes, or you can focus on your problems: If you focus on your problems, you're going into self-centeredness, which is 'my problem, my issues, my pain.' But one of the easiest ways to get rid of pain is to get your focus off yourself and onto God and others..
We discovered quickly that in spite of the prayers of hundreds of thousands of people, God was not going to heal Kay or make it easy for her- It has been very difficult for her, and yet God has strengthened her character, given her a ministry of helping other people, given her a testimony, drawn her closer to Him and to people..
You have to learn to deal with both the good and the bad of life. Actually, sometimes learning to deal with the good is harder. For instance, this past year, all of a sudden, when the book sold 15 million copies, it made me instantly very wealthy. It also brought a lot of notoriety that I had never had to deal with before. I don't think God gives you money or notoriety for your own ego or for you to live a life of ease.
So I began to ask God what He wanted me to do with this money, notoriety and influence. He gave me two different passages that helped me decide what to do, II Corinthians 9 and Psalm 72.
First, in spite of all the money coming in, we would not change our lifestyle one bit... We made no major purchases.
Second, about midway through last year, I stopped taking a salary from the church.
Third, we set up foundations to fund an initiative we call The Peace Plan to plant churches, equip leaders, assist the poor, care for the sick, and educate the next generation..
Fourth, I added up all that the church had paid me in the 24 years since I started the church, and I gave it all back. It was liberating to be able to serve God for free.
We need to ask ourselves: Am I going to live for possessions? Popularity? Am I going to be driven by pressures? Guilt? Bitterness? Materialism? Or, am I going to be driven by God's purposes (for my life)?
Monday, January 11, 2010
Today
Today is getting better. Symi occasionally struggles to eat. Sometimes she'll just scream out of no where and for a while. We're still struggling with her though. Life is nothing like it was before all this happened, but these last 2 days have felt more normal than I've felt in months!
Right now my heart is so extremely full. I am completely overwhelmed by the phone calls, offers for help, meals being offered, and a shoulder to cry on. I truly was thinking selfishly when I said I feel so all alone. I now know better. I can never say Thank You enough to all of you. I'll never be able to repay you for such kindness to me and my family right now. I feel so up lifted! I feel so much better. I feel like we can conquer this now! Instead of it conquering us!
This probably sounds silly, but I am so choked up over the enormous responds by so many. I was only trying to find someone to talk to because Dane had been gone all day. I read back now and I was pretty upset at the moment. It really was a bad day that was only getting worse! But now I feel like I have an army backing me up every step of the way.
Thank You. From the bottom of my heart. Thank you.
Right now my heart is so extremely full. I am completely overwhelmed by the phone calls, offers for help, meals being offered, and a shoulder to cry on. I truly was thinking selfishly when I said I feel so all alone. I now know better. I can never say Thank You enough to all of you. I'll never be able to repay you for such kindness to me and my family right now. I feel so up lifted! I feel so much better. I feel like we can conquer this now! Instead of it conquering us!
This probably sounds silly, but I am so choked up over the enormous responds by so many. I was only trying to find someone to talk to because Dane had been gone all day. I read back now and I was pretty upset at the moment. It really was a bad day that was only getting worse! But now I feel like I have an army backing me up every step of the way.
Thank You. From the bottom of my heart. Thank you.
Friday, January 8, 2010
Symi
Well the other day we had an appointment with our Pediatrician to discuss what happened with Symi at Primary's and to discuss future plans.
When all was done, I crawled into my car and cried. It wasn't the news that I wanted to hear. It wasn't where I thought we were going.
Our Dr said that the previous day he had been on the phone with Primary's for over an hour. Discussing everything that went on and deciding what they wanted to do for her future. When we got there the Dr really didn't smile, but was straight forward and very concerned. He told us that the only reason why we got released from Primary's was because she started eating on her own. And that they knew that we just wanted to go home. They diagnosed something for liability reasons and sent us home with a "plan" as well. But as far as they knew, they had no idea what was really wrong with her. Our Dr described it as us covering up something with a BIG bandaid. He told me that he expecting the "episodes" to come back. And that the Dr's at Primary's expected us to come back too. They are all stunned and extremely puzzled by this little girl. No one knows what is truly wrong or how to help her. They were glad to see that she responded well to the formula and all the different medications.
When we went to see the Dr she was starting into another "episode" of not eating. We were going on 7 hours. Our Dr informed us that if she didn't start eating by 10 hours to take her back to Primary's ER and start all over again. I asked him," Are we just suppose to keep this girl alive through ER visits with IV's and feeding tubes!?" He said," Yes if that's what it takes we'll do it." The Dr informed me that it's now all in my hands. To do whatever it takes to get calories, fluids, and regular bowel movements for this little girl. He told me that our next step that was going to be taken at Primary's was a head CT scan. He suggested that if they do that, that they do a full body CT scan instead. So far they have no leads. No where to turn for testing. And are hoping that she will continue to grow and develop like a normal child.
So these last few days I've just been trying to swallow this big chuck that I've been given to chew. I haven't wanted to post because it's been really hard for me to take. The reality is kind of hard.
I was so grateful when she took a bottle shortly after we returned home. I am even more grateful that she's continued to eat since that day. Each day is so different. One day she'll be normal. Smiley, giggly, super active, eating and sleeping well. Then it's like someone turned on a light switch and we're back to the fussy, uncomfortable, not sleeping, and ornery baby. Sometimes she'll just scream and scream and scream. It's hard to just lay her in her bed, but she arches her back so hard that it's nearly impossible to hold her.
My house is a mess. I have dishes piled like a mountain across my counter. Laundry that really needs to be done. (Dane keeps asking if I've done this batch or that batch. Finally he said today, Honey, I'm trying to be patient, but this is the 3rd day that I've had to wear this shirt. Could you please wash some today so that I can wear a clean on tomorrow?) You could eat food off the floor, only because it's has spilled food and crumbs all over. The Relief Society has offered to make meals for me ever since we've arrived home. So far we've gotten one. That was the only thing I asked for them to help me with. I didn't ask them to alter their lives and come stay with me every sleepless night. Sitting up with a fussy baby, and restless toddler. I didn't ask them to come and deep clean my house. I didn't ask them to take Ben for a few hours in a day to give him someone to play with and allow me a nap. I didn't ask them for the world. And they have already told me that my situation doesn't allow them to bring me anymore meals unless it's an emergency. Thanks. It would be nice if someone could sit with my kids for 15 mins. while I shower for the first time this week.
I just need to vent. Cry. Pick myself back up and try to tackle this all alone yet again. Dane is back to working 2 full-time jobs. Trying to function on even less sleep and keep a paycheck coming for all the added expenditures.
After our Dr's visit I went to the WIC office to pick up Symi's specialty formula. The lady that was over our "case" told me that they weren't going to give us the formula. That she didn't have an extreme enough condition to warrant her getting this specific formula. I wanted to kindly place my hands around her neck and strangle her!!! That was the last thing I needed to hear right then. I came undone. I said,"What does it take to warrant such a release for the formula? Does a baby have to go through a week of IV treatment. With a feeding tube shoved down her nose making her eat while she screams and cries! Does a baby have to have a diagnosis to have such a formula avaiable when right now it's the only thing keeping her alive!? What more do you guys want in order for me to get the formula!??!?!? My right arm!" I was a little upset. I was really mad. Finally she said,"Well you did finish all the paperwork. I'll see if I can't send a few of them home with you." AAAAAAAHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! SO finally I walked away with a some more formula. That I have to get a Dr's release everytime I go or else Symi has nothing to eat. Great people. Just great.
My nerves are shot. My baby still cries. And I only want her to be happy and healthy. I guess it's a lot to ask for right now.
When all was done, I crawled into my car and cried. It wasn't the news that I wanted to hear. It wasn't where I thought we were going.
Our Dr said that the previous day he had been on the phone with Primary's for over an hour. Discussing everything that went on and deciding what they wanted to do for her future. When we got there the Dr really didn't smile, but was straight forward and very concerned. He told us that the only reason why we got released from Primary's was because she started eating on her own. And that they knew that we just wanted to go home. They diagnosed something for liability reasons and sent us home with a "plan" as well. But as far as they knew, they had no idea what was really wrong with her. Our Dr described it as us covering up something with a BIG bandaid. He told me that he expecting the "episodes" to come back. And that the Dr's at Primary's expected us to come back too. They are all stunned and extremely puzzled by this little girl. No one knows what is truly wrong or how to help her. They were glad to see that she responded well to the formula and all the different medications.
When we went to see the Dr she was starting into another "episode" of not eating. We were going on 7 hours. Our Dr informed us that if she didn't start eating by 10 hours to take her back to Primary's ER and start all over again. I asked him," Are we just suppose to keep this girl alive through ER visits with IV's and feeding tubes!?" He said," Yes if that's what it takes we'll do it." The Dr informed me that it's now all in my hands. To do whatever it takes to get calories, fluids, and regular bowel movements for this little girl. He told me that our next step that was going to be taken at Primary's was a head CT scan. He suggested that if they do that, that they do a full body CT scan instead. So far they have no leads. No where to turn for testing. And are hoping that she will continue to grow and develop like a normal child.
So these last few days I've just been trying to swallow this big chuck that I've been given to chew. I haven't wanted to post because it's been really hard for me to take. The reality is kind of hard.
I was so grateful when she took a bottle shortly after we returned home. I am even more grateful that she's continued to eat since that day. Each day is so different. One day she'll be normal. Smiley, giggly, super active, eating and sleeping well. Then it's like someone turned on a light switch and we're back to the fussy, uncomfortable, not sleeping, and ornery baby. Sometimes she'll just scream and scream and scream. It's hard to just lay her in her bed, but she arches her back so hard that it's nearly impossible to hold her.
My house is a mess. I have dishes piled like a mountain across my counter. Laundry that really needs to be done. (Dane keeps asking if I've done this batch or that batch. Finally he said today, Honey, I'm trying to be patient, but this is the 3rd day that I've had to wear this shirt. Could you please wash some today so that I can wear a clean on tomorrow?) You could eat food off the floor, only because it's has spilled food and crumbs all over. The Relief Society has offered to make meals for me ever since we've arrived home. So far we've gotten one. That was the only thing I asked for them to help me with. I didn't ask them to alter their lives and come stay with me every sleepless night. Sitting up with a fussy baby, and restless toddler. I didn't ask them to come and deep clean my house. I didn't ask them to take Ben for a few hours in a day to give him someone to play with and allow me a nap. I didn't ask them for the world. And they have already told me that my situation doesn't allow them to bring me anymore meals unless it's an emergency. Thanks. It would be nice if someone could sit with my kids for 15 mins. while I shower for the first time this week.
I just need to vent. Cry. Pick myself back up and try to tackle this all alone yet again. Dane is back to working 2 full-time jobs. Trying to function on even less sleep and keep a paycheck coming for all the added expenditures.
After our Dr's visit I went to the WIC office to pick up Symi's specialty formula. The lady that was over our "case" told me that they weren't going to give us the formula. That she didn't have an extreme enough condition to warrant her getting this specific formula. I wanted to kindly place my hands around her neck and strangle her!!! That was the last thing I needed to hear right then. I came undone. I said,"What does it take to warrant such a release for the formula? Does a baby have to go through a week of IV treatment. With a feeding tube shoved down her nose making her eat while she screams and cries! Does a baby have to have a diagnosis to have such a formula avaiable when right now it's the only thing keeping her alive!? What more do you guys want in order for me to get the formula!??!?!? My right arm!" I was a little upset. I was really mad. Finally she said,"Well you did finish all the paperwork. I'll see if I can't send a few of them home with you." AAAAAAAHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! SO finally I walked away with a some more formula. That I have to get a Dr's release everytime I go or else Symi has nothing to eat. Great people. Just great.
My nerves are shot. My baby still cries. And I only want her to be happy and healthy. I guess it's a lot to ask for right now.
Tuesday, January 5, 2010
WHAT!?!?
Ben: Mommy, would you hurry up already? My brother wants to come!
Me: WHAT!?!? What are you talking about?
Ben: He's waiting and wants to come here. So you just need to hurry ok!
Me: We just had a sister, do you really need a brother right now.
Ben: Yeah, we have a sister. But my brother wants to come.
Me: ok
(Where this came from I have NO idea! I'm in shock!)
Me: WHAT!?!? What are you talking about?
Ben: He's waiting and wants to come here. So you just need to hurry ok!
Me: We just had a sister, do you really need a brother right now.
Ben: Yeah, we have a sister. But my brother wants to come.
Me: ok
(Where this came from I have NO idea! I'm in shock!)
Sunday, January 3, 2010
New Year
So I didn't think coming home would be so much hard work!! Trying to keep 5 different medications, doses, and timing straight is enough to make someone crazy! Along with keeping records of eating and dirty diapers is insane! I didn't think that coming home would be so complicated! But it's been wonderful to be home.
Symi has been doing ok. She's still struggling from time to time. But the medications seem to be helping and eating is pretty much back to normal. The only struggle we've had to far is that poor Symi is struggling to sleep. She slept horribly in the hospital and has brought her new habit home. Nights have been torture for Dane and I. Sleep deprevation is tough. But we seem to be working through it ok. Each day naps are improving and sleep at nights, well we'll keep praying that she can sleep better!
My house has been an absolute wreck since we've gotten home! Everyday I keep trying to clean a little bit here and there. But it's getting the better of me. It's been so wonderful to have some meals brought in and to find out that I don't have any Visiting Teacher's assigned to me. A dear sweet lady, AKA bishop's wife, has taken our family under her wing. She has been extremely kind and so thoughful of us. What a wonderful lady!
Our "Holiday" really didn't feel like one. Usually your surrounded by family, good food, and lots of visiting, gaming, and time together. This year was spent in the hospital just Dane, Symi, and I without family or Ben. It was really hard to be apart. I kept telling Dane it feels like we didn't even get to enjoy Christmas this year. We called Santa on the night of the 23rd and asked him to come early. He came. We quickly opened presants, and started to prepare and make plans for Primary Children's. We felt like we didn't even get to enjoy a full day of Christmas. But we were pleasantly surprised when Dane's family wanted to come down for a night and spend some time with us! So we rang in the New Year with good food, good times, and a sigh of relief for Dane and I. Even though it wasn't much or very long, it was so enjoyable! Thanks guys!
So now tomorrow will be a true test of strength for me. Dane leaves me alone to go back to work. I hope that the struggle will be easier to bear alone. I also pray that Ben will be patient with Symi and I while we all figure this out together. We're home, but it's the toughest time that we've had yet. Please keep our family in your prayers. We have felt them, and continue to need them!
Symi has been doing ok. She's still struggling from time to time. But the medications seem to be helping and eating is pretty much back to normal. The only struggle we've had to far is that poor Symi is struggling to sleep. She slept horribly in the hospital and has brought her new habit home. Nights have been torture for Dane and I. Sleep deprevation is tough. But we seem to be working through it ok. Each day naps are improving and sleep at nights, well we'll keep praying that she can sleep better!
My house has been an absolute wreck since we've gotten home! Everyday I keep trying to clean a little bit here and there. But it's getting the better of me. It's been so wonderful to have some meals brought in and to find out that I don't have any Visiting Teacher's assigned to me. A dear sweet lady, AKA bishop's wife, has taken our family under her wing. She has been extremely kind and so thoughful of us. What a wonderful lady!
Our "Holiday" really didn't feel like one. Usually your surrounded by family, good food, and lots of visiting, gaming, and time together. This year was spent in the hospital just Dane, Symi, and I without family or Ben. It was really hard to be apart. I kept telling Dane it feels like we didn't even get to enjoy Christmas this year. We called Santa on the night of the 23rd and asked him to come early. He came. We quickly opened presants, and started to prepare and make plans for Primary Children's. We felt like we didn't even get to enjoy a full day of Christmas. But we were pleasantly surprised when Dane's family wanted to come down for a night and spend some time with us! So we rang in the New Year with good food, good times, and a sigh of relief for Dane and I. Even though it wasn't much or very long, it was so enjoyable! Thanks guys!
So now tomorrow will be a true test of strength for me. Dane leaves me alone to go back to work. I hope that the struggle will be easier to bear alone. I also pray that Ben will be patient with Symi and I while we all figure this out together. We're home, but it's the toughest time that we've had yet. Please keep our family in your prayers. We have felt them, and continue to need them!
Thursday, December 31, 2009
We're Home!
We were released on Tuesday late afternoon to take our Symi home! She is on 5 different medications and a specialty formula that costs $65 for a 14 oz can! But putting it all together she is eating again. And she was eating enough to keep herself hydrated and maintaining her weight. So they sent us home.
Dane wanted to put a sign on our front door that says "Pharmacy". Seeing how between me and the kids we are all on 10 different medicines! Wow! Anyways, we are so glad to be home. We have to keep a constant record of her eating habits and medications. These last few days have been rough and hard to remember everything. But I'm sloooooowwwwllllyy, starting to remember.
She is acting SO much better and really is such a happy baby! She is trying to roll around more and more. And reach for everything. Then try to get it to her mouth as quickly as possible. She has been squealing, giggling, and jabbering so much! It's so nice to see after so long of not having her happy. When she and Ben saw each other for the first time in almost a week, Symi could not stop smiling! And Ben didn't want to leave her side! I as a Mom melted to see how attached they are to each other and how much they really care for each other too. It's amazing that even though they are so young they already have such a bond!
The only thing that she's still struggling with is sleep. She really has a hard time at nights and Dane and I take turns with her. Last night on my shift she pooped, and then was up for 2 hours straight. We had a good time together. Her being fussy and me walking back and forth with her until she fell asleep. Then I quietly laid her in her bed, kissed her cheek, and listened to her sign quietly as she fell into a deeper sleep. I'm so blessed to have such wonderful children. Despite all the health problems they have, it's not so bad. I love them both so much!
We also wanted to say a special Thank You to everyone who participated in our fast for Symi. We have a strong testimony now as we watched miracles and blessings happen from fasting with such faith. The Dr's didn't think we'd leave for a long while. They were so shocked when she made such a HUGE and quick turn around. Going from being so sick to being so well! We are truely blessed.
Hope that you all had a wonderful and Merry Christmas this year!
Dane wanted to put a sign on our front door that says "Pharmacy". Seeing how between me and the kids we are all on 10 different medicines! Wow! Anyways, we are so glad to be home. We have to keep a constant record of her eating habits and medications. These last few days have been rough and hard to remember everything. But I'm sloooooowwwwllllyy, starting to remember.
She is acting SO much better and really is such a happy baby! She is trying to roll around more and more. And reach for everything. Then try to get it to her mouth as quickly as possible. She has been squealing, giggling, and jabbering so much! It's so nice to see after so long of not having her happy. When she and Ben saw each other for the first time in almost a week, Symi could not stop smiling! And Ben didn't want to leave her side! I as a Mom melted to see how attached they are to each other and how much they really care for each other too. It's amazing that even though they are so young they already have such a bond!
The only thing that she's still struggling with is sleep. She really has a hard time at nights and Dane and I take turns with her. Last night on my shift she pooped, and then was up for 2 hours straight. We had a good time together. Her being fussy and me walking back and forth with her until she fell asleep. Then I quietly laid her in her bed, kissed her cheek, and listened to her sign quietly as she fell into a deeper sleep. I'm so blessed to have such wonderful children. Despite all the health problems they have, it's not so bad. I love them both so much!
We also wanted to say a special Thank You to everyone who participated in our fast for Symi. We have a strong testimony now as we watched miracles and blessings happen from fasting with such faith. The Dr's didn't think we'd leave for a long while. They were so shocked when she made such a HUGE and quick turn around. Going from being so sick to being so well! We are truely blessed.
Hope that you all had a wonderful and Merry Christmas this year!
Monday, December 28, 2009
Today
Well today started off looking rough and bad.
Last night Symi struggled through the feeding through the tube. She was sleeping pretty good though. Really fussy and upset. It took them a few hours to console her enough to go back to sleep.
This morning we started off with a Swallow study. They x-rayed her while they were having her swallow barium. She LOVED the barium and kept drinking and drinking and wanting MORE!! After we came back she accepted a 3 oz bottle and then crashed and slept hard for a few hours. We haven't seen either of these 2 things since we've arrived! Huge steps! After the swallow study was done we talked with a GI specialist. She changed up the meds a bit and put her on a specially made formula from the pharmacy. Miracle #1 she ate it and has been eating it ever since this afternoon!!!! We were able to take her off her IV fluid too and hope that if she can continue to eat on her own we will go home soon.
Today had its rough moments. But so many Big Steps today that we didn't know when we'd see them! We are so happy and grateful to all those who fasted and prayed for our little Symi and family yesterday!! I cannot thank you enough. We are seeing the blessings and feeling the strength as parents. Thank you.
So we're hoping for a wonderful day tomorrow! I'll try to keep you posted!
Last night Symi struggled through the feeding through the tube. She was sleeping pretty good though. Really fussy and upset. It took them a few hours to console her enough to go back to sleep.
This morning we started off with a Swallow study. They x-rayed her while they were having her swallow barium. She LOVED the barium and kept drinking and drinking and wanting MORE!! After we came back she accepted a 3 oz bottle and then crashed and slept hard for a few hours. We haven't seen either of these 2 things since we've arrived! Huge steps! After the swallow study was done we talked with a GI specialist. She changed up the meds a bit and put her on a specially made formula from the pharmacy. Miracle #1 she ate it and has been eating it ever since this afternoon!!!! We were able to take her off her IV fluid too and hope that if she can continue to eat on her own we will go home soon.
Today had its rough moments. But so many Big Steps today that we didn't know when we'd see them! We are so happy and grateful to all those who fasted and prayed for our little Symi and family yesterday!! I cannot thank you enough. We are seeing the blessings and feeling the strength as parents. Thank you.
So we're hoping for a wonderful day tomorrow! I'll try to keep you posted!
Sunday, December 27, 2009
Update
Symi has been having a pretty rough day. And according to the Dr's tomorrow is going to be really tough. But hopefully we'll start to see some results and answers. I guess I'm just tired of sitting and waiting. So it's nice for me to see them really start to take some action.
Today she was started on a feeding tube that was place through her nose into her stomach. They started the feedings and immediantly she start to scream. Not fun at all. She was very upset for almost 2 hours after she ate too. Very fussy today and could not get comfortable. Same results happened when they tried to feed her a second time today.
I needed a break. Found a quiet hall to myself and bawled. I was starting to feel better. When a woman approached me and informed me that we were neighbors. She was right across the hallway with her daughter. She asked if we were alright because it seemed like we were sure having a rough day with Symi. I started to bawl again. I was thinking today that no one in this hospital seems to really care or take as much concern about Symi as Dane and I have been. So after we spoke for a moment. I felt much better. She kindly asked if she could give me a hug. Here we were instructed not to touch each other. As it can cause disease and sickness to quickly spread. I sigh really big and said yes. Then started to bawl all over again. She said," You know sometimes it's really tough in here. And all you need is someone to wrap their arms around you." She was so right.
Tomorrow they want to start a more aggressive approach to this. They were talking about doing an Endoscopy on her. We were doing this last year with Ben so it wasn't anything new to us. Other than she's the age where she cannot be awake. She has to be put under. That's so hard to hear. I don't know if they really will do it. We've been hearing for days of different things that they want to do and nothing has happened according to "the plan". So everyday is an annoying waiting game. Now after 3 days they said," We know that your daughter is really having a hard time and that something more serious is going on." Really! Are you kidding me?! I've been telling you people this ever since we walking into the ER on Christmas Eve and you're now telling me that you've finally hear what I've said!! Wow. Someone needs to see an ear Dr. Anyways, I've been super frustrated and now and seeing a light at the end of a long tunnel.
I don't know how long we will be here for. They said that they won't release her until she can eat on her own, maitain her weight, and keep herself hydrated enough that she doesn't require an IV. So I'm sure we'll be here for a long while.
Today she was started on a feeding tube that was place through her nose into her stomach. They started the feedings and immediantly she start to scream. Not fun at all. She was very upset for almost 2 hours after she ate too. Very fussy today and could not get comfortable. Same results happened when they tried to feed her a second time today.
I needed a break. Found a quiet hall to myself and bawled. I was starting to feel better. When a woman approached me and informed me that we were neighbors. She was right across the hallway with her daughter. She asked if we were alright because it seemed like we were sure having a rough day with Symi. I started to bawl again. I was thinking today that no one in this hospital seems to really care or take as much concern about Symi as Dane and I have been. So after we spoke for a moment. I felt much better. She kindly asked if she could give me a hug. Here we were instructed not to touch each other. As it can cause disease and sickness to quickly spread. I sigh really big and said yes. Then started to bawl all over again. She said," You know sometimes it's really tough in here. And all you need is someone to wrap their arms around you." She was so right.
Tomorrow they want to start a more aggressive approach to this. They were talking about doing an Endoscopy on her. We were doing this last year with Ben so it wasn't anything new to us. Other than she's the age where she cannot be awake. She has to be put under. That's so hard to hear. I don't know if they really will do it. We've been hearing for days of different things that they want to do and nothing has happened according to "the plan". So everyday is an annoying waiting game. Now after 3 days they said," We know that your daughter is really having a hard time and that something more serious is going on." Really! Are you kidding me?! I've been telling you people this ever since we walking into the ER on Christmas Eve and you're now telling me that you've finally hear what I've said!! Wow. Someone needs to see an ear Dr. Anyways, I've been super frustrated and now and seeing a light at the end of a long tunnel.
I don't know how long we will be here for. They said that they won't release her until she can eat on her own, maitain her weight, and keep herself hydrated enough that she doesn't require an IV. So I'm sure we'll be here for a long while.
Saturday, December 26, 2009
Primary Children's
We were admitted into Primary Children's for Symi on Christmas Eve.
She is struggling to eat. Infact she hasn't eaten since 4am. I don't have time to say much. So I'll be breif. She's not doing well. Loosing weight, struggling to eat, uncomfortable constantly, and starting to now sleep well.
Our plea. Tomorrow we are fasting for Symi. We are fasting to recieve inspiration for the Dr's. That they might know what is going on with her and how to help her. Please keep our small family in your prayers. We need them. We feel their strength and guidance.
It's tough, but we are trying to keep ourselves together.
I'll try to post as often as I can, but I can't promise you that it will be every day.
She is struggling to eat. Infact she hasn't eaten since 4am. I don't have time to say much. So I'll be breif. She's not doing well. Loosing weight, struggling to eat, uncomfortable constantly, and starting to now sleep well.
Our plea. Tomorrow we are fasting for Symi. We are fasting to recieve inspiration for the Dr's. That they might know what is going on with her and how to help her. Please keep our small family in your prayers. We need them. We feel their strength and guidance.
It's tough, but we are trying to keep ourselves together.
I'll try to post as often as I can, but I can't promise you that it will be every day.
Friday, December 18, 2009
Symi Update
Ok so today's been a long, LOOOONNNNNGGGGG day!
Symi was very fussy last night and didn't sleep well. Neither did I. I truly felt like a yo-yo hitting the bed over and over last night only to jump back up to take care of Symi. At least Ben slept through the night!
This morning she wasn't eating well again. I fed her around 6:30 am last and then tried over and over again today for her to eat again. No success. She napped horribly today and just wasn't doing well. This afternoon she really got fussy and started screaming all over again. I called Dane and asked him to come straight home. We collected ourselves, finally found a babysitter for Ben (julie you are awesome! A HUGE Thank you to you!). And headed to the Dr's office. He was very concerned. He wanted to do just a simple x-ray to see if she was constipated. So we did. She's not constipated at all. So why is she going from being happy to screaming and not eating or sleeping? Well we just don't know. If it happens again our Dr has instructed us to head straight to Primary Children's Hospital. Hopefully for answers. He is concerned about her and wants to make sure that we are doing what's best for her. But he doesn't know what else to do.
So far she's finally drank a bottle and fell asleep on the way home. A huge relief!!! Hopefully it's not another long night. I can only yo-yo for so long!?
Keep us in your prayers. We need them.
Symi was very fussy last night and didn't sleep well. Neither did I. I truly felt like a yo-yo hitting the bed over and over last night only to jump back up to take care of Symi. At least Ben slept through the night!
This morning she wasn't eating well again. I fed her around 6:30 am last and then tried over and over again today for her to eat again. No success. She napped horribly today and just wasn't doing well. This afternoon she really got fussy and started screaming all over again. I called Dane and asked him to come straight home. We collected ourselves, finally found a babysitter for Ben (julie you are awesome! A HUGE Thank you to you!). And headed to the Dr's office. He was very concerned. He wanted to do just a simple x-ray to see if she was constipated. So we did. She's not constipated at all. So why is she going from being happy to screaming and not eating or sleeping? Well we just don't know. If it happens again our Dr has instructed us to head straight to Primary Children's Hospital. Hopefully for answers. He is concerned about her and wants to make sure that we are doing what's best for her. But he doesn't know what else to do.
So far she's finally drank a bottle and fell asleep on the way home. A huge relief!!! Hopefully it's not another long night. I can only yo-yo for so long!?
Keep us in your prayers. We need them.
Wednesday, December 16, 2009
Primary Children's
We returned last night and I was going to write. But Symi was restless and fussy. So I spent my time with her instead.
We went to Primary Children's Hospital yesterday for an Upper GI on Symi. We've already done this test on Ben so sad to say but it wasn't new. What happens is they get the child to drink barium then they take several pictures while it's going down watching for different things while she drinks. Well she drank 1/2 an oz. They wanted 4-5 oz in for the test. They gave us the biggest syringe I've ever seen and sent us back to the waiting room to see if we couldn't syringe it down her throat. She took a few more oz and then just started spitting it all out. So we finally put a tube down her nose and injected the rest into her stomach. She was a trooper until they put it down her nose. She got really stuburn and MAD!! wow! Anyways, the tube wasn't even in there for a minute. They got the stuff in. Took the tube out. Took several images. And said, "We don't know why you are here? Everything looks normal and just fine." We'll send the images and results back to your Dr. They sent us home to watch her and make sure that she doesn't throw up the barium and that it comes out the other end. And to keep her well hydrated
We went back to my sister-in-laws house and spent the afternoon there waiting for it to digest. We ate some lunch. Dane and I took naps. Then we packed up and headed back on the road.
When we got home I called the Dr and asked if he'd gotten the images that we sent. He look them up and said yes. I asked him why we went down there on such an urgent matter because everything looked so normal. He said that he and the Gastroenterologist wanted to know if her anatomy was backwards. (meaning that her organs were place opposite of what they should be) If she did, there can be lots of complications with that. Our Dr and the Gastro Dr both wanted us to be at Primary's for the test in case if they need to admit us and start correcting the deformalities if there were any. He said that we went down there not knowing because he didn't want to scare us or cause us to panic because they didn't know yet.
So we are home now. Things are going just fine. Her anatomy is in the correct place and she is slowly falling back into her "normal". We are monitoring her closley to see if this "episode" happens again. If so we are instructed to return to the ER again. But for now we are to treat her like she's just constipated. They want her on some juice everyday and if that doesn't work than try a glycerin suppository. (oh fun) We're hoping for juice. So far things are moving along by themselves. She is sleeping a lot. But that's normal. We're still trying to find sleep so the nap the other day was very welcomed!
I hope that you are all having and will have a wonderful Christmas! Ours is one we'll always remember!
We went to Primary Children's Hospital yesterday for an Upper GI on Symi. We've already done this test on Ben so sad to say but it wasn't new. What happens is they get the child to drink barium then they take several pictures while it's going down watching for different things while she drinks. Well she drank 1/2 an oz. They wanted 4-5 oz in for the test. They gave us the biggest syringe I've ever seen and sent us back to the waiting room to see if we couldn't syringe it down her throat. She took a few more oz and then just started spitting it all out. So we finally put a tube down her nose and injected the rest into her stomach. She was a trooper until they put it down her nose. She got really stuburn and MAD!! wow! Anyways, the tube wasn't even in there for a minute. They got the stuff in. Took the tube out. Took several images. And said, "We don't know why you are here? Everything looks normal and just fine." We'll send the images and results back to your Dr. They sent us home to watch her and make sure that she doesn't throw up the barium and that it comes out the other end. And to keep her well hydrated
We went back to my sister-in-laws house and spent the afternoon there waiting for it to digest. We ate some lunch. Dane and I took naps. Then we packed up and headed back on the road.
When we got home I called the Dr and asked if he'd gotten the images that we sent. He look them up and said yes. I asked him why we went down there on such an urgent matter because everything looked so normal. He said that he and the Gastroenterologist wanted to know if her anatomy was backwards. (meaning that her organs were place opposite of what they should be) If she did, there can be lots of complications with that. Our Dr and the Gastro Dr both wanted us to be at Primary's for the test in case if they need to admit us and start correcting the deformalities if there were any. He said that we went down there not knowing because he didn't want to scare us or cause us to panic because they didn't know yet.
So we are home now. Things are going just fine. Her anatomy is in the correct place and she is slowly falling back into her "normal". We are monitoring her closley to see if this "episode" happens again. If so we are instructed to return to the ER again. But for now we are to treat her like she's just constipated. They want her on some juice everyday and if that doesn't work than try a glycerin suppository. (oh fun) We're hoping for juice. So far things are moving along by themselves. She is sleeping a lot. But that's normal. We're still trying to find sleep so the nap the other day was very welcomed!
I hope that you are all having and will have a wonderful Christmas! Ours is one we'll always remember!
Monday, December 14, 2009
Symi in the ER
Just posting a little something different. Not pleasant, but different. oh boy.
Friday Symi started to get fussy and was just kind of grumpy. We took her to our Ward's Christmas party and she screamed the whole time. I just thought that it was too many people and that she was overwhelmed. That night she didn't sleep well and started to loose her appetite.
Saturday she was really really grumpy all day. Fussing on and off, occasionally screaming in fits, but grinning and smiling occasionally too. She really wasn't eating which is VERY odd for her. She wasn't sleeping either. By the afternoon she started screaming, arching her back, for hours!! I thought that she was getting an ear infection and was being very vocal about it. We decided to take her to the local instacare. We got there and immediately they sent us to the ER. The on call Dr though she'd scratched her eye. My thoughts were . . . She's bawling and screaming these last few days over an eye!? WHAT?!?!? They tested her eye and nothing was wrong. They continued to tell us that she might have intussuception. Where the intestines telescope into themselves causing TONS of pain. At one point we thought Ben had this too. So we proceeded to test her with a barium enema and something called real life x-ray. As the barium was being pushed into her we watcher her colan on the screen. It did NOT look normal?! Normall a colan starts at your bum wraps up around the left side, up under your diaphram, and then back around on your right side. Symi's was looping and swirling in all directions but the correct one! Her colan was very enlarged and seemed to have some fecal matter inside. After the exam was almost finished she started to scream even louder and suddenly had a large FAST bowel movement. She made quite the mess. But she started to feel much better. As we watched the bowel movement happen her colan realigned into place. They told us that this NEVER happens and that they can't explain how it happened while they were doing the barium enima. She started to really perk up! Wanting to eat, and finally crashed and started to rest, instead of fuss and scream. It was wonderful to see! We thought that she was doing better and they released us to go home. She started to decline a little when we brought her home a fever started to develop and she became quite uncomfortable again. She would not sleep! Dane and I took shifts throughout the night. I called the ER again because her fever reached 102.5 and was continuing to climb even on Tylenol. They wanted us to come back in. I didn't want to go yet because it was 3 in the morning and I wasn't too keen on the idea of waking Ben in the middle of the night to transport him to someone elses house and leaving him there. I asked the Dr if we could wait a while and see if it didn't break at our house first. He said that he'd really like us to come in but if we would like we could wait a half an hour first. Well I waited an hour and finally it broke to around 100. So we stayed home. Sunday she was restless and grumpy all day. You could just tell she didn't feel good. We kept up on her temp which fluctiated between 99 and 100. She would cat nap only if we were holding her. Dane and I took turns again. Holding her until our arms went numb and then changing. We finally got her to sleep deep when her fever broke agian last night around midnight. She's now at 97.7 and holding.
Today we went into the Dr's office for a follow up appointment. He was very concerned about what had happened over the last few days. He wanted to run some more test and contact a specialist at Primary Children's Hospital. He sent us home on strict instructions not to go anywhere. We waited for about and hour and got a call instructing us to head to Salt Lake immediantly for an Upper GI test. Ben could not be with us while we attend this test. I asked if this was an emergency. They said no but it was extremely urgent. We then schedule an appointment for tomorrow at 8 am. So we are heading down tonight. I hope to keep everyone posted and updated as we find out information.
Guess it wasn't an ear infection after all.
I was just telling Dane how grateful I was that we were spending our Christmas home this year and not traveling back and forth to Primary Children's Hospital. I should have bit my tough or knocked on wood. Because here we go again with #2.
Please keep us in your prayers.
Friday Symi started to get fussy and was just kind of grumpy. We took her to our Ward's Christmas party and she screamed the whole time. I just thought that it was too many people and that she was overwhelmed. That night she didn't sleep well and started to loose her appetite.
Saturday she was really really grumpy all day. Fussing on and off, occasionally screaming in fits, but grinning and smiling occasionally too. She really wasn't eating which is VERY odd for her. She wasn't sleeping either. By the afternoon she started screaming, arching her back, for hours!! I thought that she was getting an ear infection and was being very vocal about it. We decided to take her to the local instacare. We got there and immediately they sent us to the ER. The on call Dr though she'd scratched her eye. My thoughts were . . . She's bawling and screaming these last few days over an eye!? WHAT?!?!? They tested her eye and nothing was wrong. They continued to tell us that she might have intussuception. Where the intestines telescope into themselves causing TONS of pain. At one point we thought Ben had this too. So we proceeded to test her with a barium enema and something called real life x-ray. As the barium was being pushed into her we watcher her colan on the screen. It did NOT look normal?! Normall a colan starts at your bum wraps up around the left side, up under your diaphram, and then back around on your right side. Symi's was looping and swirling in all directions but the correct one! Her colan was very enlarged and seemed to have some fecal matter inside. After the exam was almost finished she started to scream even louder and suddenly had a large FAST bowel movement. She made quite the mess. But she started to feel much better. As we watched the bowel movement happen her colan realigned into place. They told us that this NEVER happens and that they can't explain how it happened while they were doing the barium enima. She started to really perk up! Wanting to eat, and finally crashed and started to rest, instead of fuss and scream. It was wonderful to see! We thought that she was doing better and they released us to go home. She started to decline a little when we brought her home a fever started to develop and she became quite uncomfortable again. She would not sleep! Dane and I took shifts throughout the night. I called the ER again because her fever reached 102.5 and was continuing to climb even on Tylenol. They wanted us to come back in. I didn't want to go yet because it was 3 in the morning and I wasn't too keen on the idea of waking Ben in the middle of the night to transport him to someone elses house and leaving him there. I asked the Dr if we could wait a while and see if it didn't break at our house first. He said that he'd really like us to come in but if we would like we could wait a half an hour first. Well I waited an hour and finally it broke to around 100. So we stayed home. Sunday she was restless and grumpy all day. You could just tell she didn't feel good. We kept up on her temp which fluctiated between 99 and 100. She would cat nap only if we were holding her. Dane and I took turns again. Holding her until our arms went numb and then changing. We finally got her to sleep deep when her fever broke agian last night around midnight. She's now at 97.7 and holding.
Today we went into the Dr's office for a follow up appointment. He was very concerned about what had happened over the last few days. He wanted to run some more test and contact a specialist at Primary Children's Hospital. He sent us home on strict instructions not to go anywhere. We waited for about and hour and got a call instructing us to head to Salt Lake immediantly for an Upper GI test. Ben could not be with us while we attend this test. I asked if this was an emergency. They said no but it was extremely urgent. We then schedule an appointment for tomorrow at 8 am. So we are heading down tonight. I hope to keep everyone posted and updated as we find out information.
Guess it wasn't an ear infection after all.
I was just telling Dane how grateful I was that we were spending our Christmas home this year and not traveling back and forth to Primary Children's Hospital. I should have bit my tough or knocked on wood. Because here we go again with #2.
Please keep us in your prayers.
Friday, December 11, 2009
I promised . . .
. . . . that I would post pictures of them playing under her "Hanging Gym". There are ones right when it happened and she was so tiny. Then there are some from just the other day. I find them under there together a lot!
Baby Girl
In our jammies!
Check out all my crazy hair!
Bathing Beauty!
(She doesn't like baths. Especially in the sink.)
Dane was rubbing under her chin and she went limp and totally relaxed!
Just Us
Sad. But this is what happens a lot when Dane tries to hold Symi.
Human Jungle Gym.
Watch Out!! It's Captain Hook!
(He told that to me himself.)
So we've been playing Peter Pan at our house lately. Here is the Family "Peter Pan Stance"!
Ben's just too cute in this one.
This is Symi at 3 months old.Happy Halloween
Our pumpkins. Mine. Dane. Symi. Ben.
Our little chili pepper. Some "Hot Stuff"!!
Posing with Daddy
"Hot Stuff" with Superman!
(Ben kept asking when we could just GO!! This was the last picture we took before we left.)
We could hardly get a picture of her because she was wiggling and moving around so much. Most of them ended up blurry like this one.
Our little Superman!(Yes I know he had 2 buckets/bags. We just went to Carl's Jr for lunch and he insisted on taking both. But we barely filled the pumpkin.)
Can you tell he was WAY excited!?
Tuesday, December 1, 2009
Updated Pictures
Sitting in her carseat with the hat Grandma made!
Normally she's not this happy!
Just woke up and still a little loopy.
Huh!?
Who needs a Thanksgiving Turkey to become tired and groggy!?
Happy Thanksgiving from us!
(these pictures were sent from my Mom, my camera still isn't working with my computer, but I'm still trying!)
Happy Thanksgiving from us!
(these pictures were sent from my Mom, my camera still isn't working with my computer, but I'm still trying!)
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