I'm laying in the dark with a sweet little boy snuggled right up next to me thinking and smiling of my precious little girl and how much joy she has brought me. Memories of so long ago keep popping into my head. God knows I love her with all my heart and then some.... I say a little prayer for God to keep her safe and for very selfish reasons to keep her here with me!!!
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Wednesday, March 31, 2010
Tuesday, March 30, 2010
Just an update....
yay!! I can now send short updates from my phone directly here! So now I won't ALWAYS have to have a computer!! I'm starting to be computer savvy, I think I rather like it that way!!
Anyway, now that I have a few hours on my hand I thought I would do a quick little update on the happenings in Bennettville...
This week the kids are out of school for Spring/Easter break. Today is Marshall's IVIG day and we are sitting for 4 to 5 hours for his infusion. My dad and mom are watching the other two. Thankfully he is doing pretty good, we finally got him to the ENT who put him on some super duper Antibiotics that cleared his sinuses up, and I am sure the predinsone helped too.
Amelia is doing pretty good. We haven't gotten counts yet we are waiting to do all of that next week when we are in Cincinnati. Yep we, or rather I am leaving with her and Nate next Monday to head to Cincinnati...say a little prayer for me, I will be driving! Ty is staying home to work and Marshall has to stay for school as the following week will be LEAP testing. Not sure what he has but I know that he has some important test coming us. We plan on driving the first day to about Nashville and then the next day onto Cincinnati. Wednesday we have full day with doctors and then Thursday much of the same, Amelia will need prayers that day as they plan on doing a GFR kidney functioning test and well they need an IV for that and if you have followed us in the past you know how freaking hard it is to get an IV started on her. I have already informed them about how hard she is to find a vein and that you need to have the best of the best there to get it started!!!! So I know we will both be needing prayer that day, because when it comes to it I have very few patients with them poking and searching for it...there's only so much screaming and crying I can handle they only get three chances and then that is it!!!
Friday we will be driving straight home no stopping for the night, which I don't mind as I know how to get home in the dark. I just hate driving someplace new and not knowing where I am going.
Ty returns to the doctor tomorrow, he is hoping that they release him full duty....it is killing us having him light duty and not being able to work details and having to spend almost 60 bucks a week in a truck for him to get back and forth to work. Not to mention he is totally bored to death sitting in main control. He's use to being out side.
I am not sure what we will find out on this trip to meet the new doctor. I am sure we will discuss transplant and when we should proceeded with it. I am still praying for that miracle. I am truly thankful that her counts have been pretty good for an FA patient. Her platelets have held for a month at 26-24, her hemoglobin has been between 9.6 to 10.5 so that is pretty good and her white cells have been good too at 5.3. We won't have them done again till we are in Cincinnati.
I'm not sure what I want from this meeting. I have prayed for Gods guidance and I wasn't and really am still not sure how I feel about androgen's. I know some people have had great out comes with them. Marshall was on them and of course they did nothing for his platelets but they helped his hgb(hemoglobin). I know that Dr Wagner was against them as he didn't know what they do to the out come of a transplant. Yes Marshall was fine but being that he was on them for so long it brought the out come percentage down a good bit. I'm just confused at the decision a head. That's why I am praying to God to help me make the right one for her. This is one of the hardest things in life I have ever had to do. I hate that I am the one making life and death decisions...NO parent should ever have to do this!!!! It is just not fair. I just know that it is my decision to make and that I have to do it and feel 100% comfortable with that decision there is no go backs or do overs! That is why I am weighing my options and letting God steer my thinking. Obviously there is a reason that we are at Cincinnati Children's, it is He who has gotten us here so far so I feel that we are in His hand and I am putting my Faith in Him.
Well that's all I got for now, I need to run and get Marshall some lunch so....
I'll try to update more before we leave if not you will be getting quick updates from me from my phone since I just learned how to do that!!!
Anyway, now that I have a few hours on my hand I thought I would do a quick little update on the happenings in Bennettville...
This week the kids are out of school for Spring/Easter break. Today is Marshall's IVIG day and we are sitting for 4 to 5 hours for his infusion. My dad and mom are watching the other two. Thankfully he is doing pretty good, we finally got him to the ENT who put him on some super duper Antibiotics that cleared his sinuses up, and I am sure the predinsone helped too.
Amelia is doing pretty good. We haven't gotten counts yet we are waiting to do all of that next week when we are in Cincinnati. Yep we, or rather I am leaving with her and Nate next Monday to head to Cincinnati...say a little prayer for me, I will be driving! Ty is staying home to work and Marshall has to stay for school as the following week will be LEAP testing. Not sure what he has but I know that he has some important test coming us. We plan on driving the first day to about Nashville and then the next day onto Cincinnati. Wednesday we have full day with doctors and then Thursday much of the same, Amelia will need prayers that day as they plan on doing a GFR kidney functioning test and well they need an IV for that and if you have followed us in the past you know how freaking hard it is to get an IV started on her. I have already informed them about how hard she is to find a vein and that you need to have the best of the best there to get it started!!!! So I know we will both be needing prayer that day, because when it comes to it I have very few patients with them poking and searching for it...there's only so much screaming and crying I can handle they only get three chances and then that is it!!!
Friday we will be driving straight home no stopping for the night, which I don't mind as I know how to get home in the dark. I just hate driving someplace new and not knowing where I am going.
Ty returns to the doctor tomorrow, he is hoping that they release him full duty....it is killing us having him light duty and not being able to work details and having to spend almost 60 bucks a week in a truck for him to get back and forth to work. Not to mention he is totally bored to death sitting in main control. He's use to being out side.
I am not sure what we will find out on this trip to meet the new doctor. I am sure we will discuss transplant and when we should proceeded with it. I am still praying for that miracle. I am truly thankful that her counts have been pretty good for an FA patient. Her platelets have held for a month at 26-24, her hemoglobin has been between 9.6 to 10.5 so that is pretty good and her white cells have been good too at 5.3. We won't have them done again till we are in Cincinnati.
I'm not sure what I want from this meeting. I have prayed for Gods guidance and I wasn't and really am still not sure how I feel about androgen's. I know some people have had great out comes with them. Marshall was on them and of course they did nothing for his platelets but they helped his hgb(hemoglobin). I know that Dr Wagner was against them as he didn't know what they do to the out come of a transplant. Yes Marshall was fine but being that he was on them for so long it brought the out come percentage down a good bit. I'm just confused at the decision a head. That's why I am praying to God to help me make the right one for her. This is one of the hardest things in life I have ever had to do. I hate that I am the one making life and death decisions...NO parent should ever have to do this!!!! It is just not fair. I just know that it is my decision to make and that I have to do it and feel 100% comfortable with that decision there is no go backs or do overs! That is why I am weighing my options and letting God steer my thinking. Obviously there is a reason that we are at Cincinnati Children's, it is He who has gotten us here so far so I feel that we are in His hand and I am putting my Faith in Him.
Well that's all I got for now, I need to run and get Marshall some lunch so....
I'll try to update more before we leave if not you will be getting quick updates from me from my phone since I just learned how to do that!!!
Tuesday, March 23, 2010
Conversations over heard....
Ty: "Naaaathan, come pick up this book sack."
Amelia: "dad it's a BACK pack!" ( hands on hips)
Ty: "Backpack, nap sack, bookbag...what ever it is pick it up off the porch and bring it inside."
Amelia: "dad is that what they use to call them waaaaay back when you were a kid?"
tehetehetehe......way back...yep its official....He's OLD.
Sorry I just couldn't help but laugh...hahahahaha ROFL!!!!
Amelia: "dad it's a BACK pack!" ( hands on hips)
Ty: "Backpack, nap sack, bookbag...what ever it is pick it up off the porch and bring it inside."
Amelia: "dad is that what they use to call them waaaaay back when you were a kid?"
tehetehetehe......way back...yep its official....He's OLD.
Sorry I just couldn't help but laugh...hahahahaha ROFL!!!!
Monday, March 22, 2010
Nathan's pet...
God help me with this child!!
He's had him so far since Saturday. We are gonna see how long he last...if not we will have on very disappointed boy on our hands. (I'm praying a coon doesn't come along and get it!!)
He's had him so far since Saturday. We are gonna see how long he last...if not we will have on very disappointed boy on our hands. (I'm praying a coon doesn't come along and get it!!)
Sunday, March 21, 2010
Free Zac Brown!!
For the love of my life!!
(Violin playing)
So we live out in our old van
Travel all across this land
Me and you
And we'll end up hand in hand
Somewhere down on the sand
Just me and you
Just as free
Free as we'll ever be
Just as free
Free as we'll ever be
We'll drive until the city lights
Dissolve into a country sky
Just me and you
Lay underneath the harvest moon
Do all the things that lovers do
Just me and you
Just as free
Free as we'll ever be
Just as free
Free as we'll ever be
And ever be
No we don't have a lot of money
No we don't have a lot of money
No we don't have a lot of money
No we don't have a lot of money
No we don't have a lot of money
No we don't have a lot of money
No we don't have a lot of money
All we need is love
We're free as we'll ever be
Just as free
Free as we'll ever be
So we live out in our old van
Travel all across this land
Me and you
(Violin playing)
So we live out in our old van
Travel all across this land
Me and you
And we'll end up hand in hand
Somewhere down on the sand
Just me and you
Just as free
Free as we'll ever be
Just as free
Free as we'll ever be
We'll drive until the city lights
Dissolve into a country sky
Just me and you
Lay underneath the harvest moon
Do all the things that lovers do
Just me and you
Just as free
Free as we'll ever be
Just as free
Free as we'll ever be
And ever be
No we don't have a lot of money
No we don't have a lot of money
No we don't have a lot of money
No we don't have a lot of money
No we don't have a lot of money
No we don't have a lot of money
No we don't have a lot of money
All we need is love
We're free as we'll ever be
Just as free
Free as we'll ever be
So we live out in our old van
Travel all across this land
Me and you
Saturday, March 20, 2010
back....
OK Peeps sorry I have been MIA!! We've been busy with doctors and dentist.
So here is the 411... (OK Amelia just informed me I am too old to uses peeps and 411)
I bit the bullet and made contact with Cincinnati Children's Hospital. I emailed the doctor there and with in 10 minutes she had emailed me back. Nurse Coordinator called me the next day as it was late in the afternoon and now we have appoints scheduled for April 7 & 8. My mom, dad and I are gonna drive up with Amelia and Nate. That way I'll have some help because she will be having some test run on her and I am sure we will have a very busy and stressful two days. There is a lot to cram in to a two days. While we are there one of my BFF's wants us to check out local restaurants so that way when people back home ask what they can do for us she said she is gonna tell them a gift card to restaurants and groceries.
I am starting to be a little more at ease with this decision that was, well, made for me. My other Bestest Friend Susan asked me if I was OK with going to Cincinnati....well you know how people talk about those light bulb moments? I actually had one it just hit me I felt the click in my brain.! She asked if I was OK with the decision and I told her I had to be I had no choice, the only two places left were Cincinnati or New York and I asked the doc in Minnesota which one he would go to and as I was telling her this..it just clicked, it doesn't matter what hospital we go to, in the end God is in control!!! His will, will be done no matter what hospital we are at. What He wants for her will happen no matter where we are. I just have to keep praying He keeps her here with us and keep the FAITH, no matter what. Grant it I am scared to death...literally, but I am trying to prepare myself. I know that it could happen, thing is can anyone REALLY prepare themselves to loose a child, let alone any loved one? I discuss this with Susan and she continually tells me, "you are one strong woman" In all honesty I do have my moments of weakness and break down and cry, but it is usually when no one is looking. I can't and won't let Nathan or Amelia see me that way. Nate has NO IDEA of what is going on and well I am the one who Amelia relies on and I can't let her know that I am scared to death when I know that she is shaking in her boots and feels like she has no control over her life! She too though is a strong little girl, for all she has been through, she just keeps on trucking along. She has surgery and bounces back so quick and ready to go. She will need that for sure to get her through this transplant!
She was sick last week with a sinus infection, both eyes were infected. She seemed to have been getting better, but this morning she is sneezing and sniffling....who knows. We had her CBC done Thursday and they were pretty good. They held for a month, because we had gotten them done right before we left on our trip. Her white cells were 5.4...that's good but a little high for her so I am wondering if that is a sign that something is going on, could be the sinuses are flaring up again. Her hemoglobin was 9.4...for and FAer that's OK, and her platelets were 24 and I think a month ago they were 26, so I am happy with those. I am sure we won't get them done again till we go to Cincinnati.
I'm hoping this week coming, we have no other mishaps and only have one scheduled appointment and that one is for Marshall. We go to the ENT to get a check up and, lucky him, a scope of the sinuses! Amelia has to go to school, she has LEAP testing to do on Tuesday....pray she feels better so she can fully concentrate on this test as her passing depends on it!!!
I'm also praying that when Ty goes back to the doctor on the 31st the doctor releases him back to full duty! We are dying with out the help of those details!!
Well I gotta run we are heading out to another crawfish boil...yeah I know your jealous Stefunk!
We had one last weekend at my mom and dad's and now this weekend yum!!!
Here's what Amelia had for breakfast!! The Breakfast of Champions.....
So here is the 411... (OK Amelia just informed me I am too old to uses peeps and 411)
I bit the bullet and made contact with Cincinnati Children's Hospital. I emailed the doctor there and with in 10 minutes she had emailed me back. Nurse Coordinator called me the next day as it was late in the afternoon and now we have appoints scheduled for April 7 & 8. My mom, dad and I are gonna drive up with Amelia and Nate. That way I'll have some help because she will be having some test run on her and I am sure we will have a very busy and stressful two days. There is a lot to cram in to a two days. While we are there one of my BFF's wants us to check out local restaurants so that way when people back home ask what they can do for us she said she is gonna tell them a gift card to restaurants and groceries.
I am starting to be a little more at ease with this decision that was, well, made for me. My other Bestest Friend Susan asked me if I was OK with going to Cincinnati....well you know how people talk about those light bulb moments? I actually had one it just hit me I felt the click in my brain.! She asked if I was OK with the decision and I told her I had to be I had no choice, the only two places left were Cincinnati or New York and I asked the doc in Minnesota which one he would go to and as I was telling her this..it just clicked, it doesn't matter what hospital we go to, in the end God is in control!!! His will, will be done no matter what hospital we are at. What He wants for her will happen no matter where we are. I just have to keep praying He keeps her here with us and keep the FAITH, no matter what. Grant it I am scared to death...literally, but I am trying to prepare myself. I know that it could happen, thing is can anyone REALLY prepare themselves to loose a child, let alone any loved one? I discuss this with Susan and she continually tells me, "you are one strong woman" In all honesty I do have my moments of weakness and break down and cry, but it is usually when no one is looking. I can't and won't let Nathan or Amelia see me that way. Nate has NO IDEA of what is going on and well I am the one who Amelia relies on and I can't let her know that I am scared to death when I know that she is shaking in her boots and feels like she has no control over her life! She too though is a strong little girl, for all she has been through, she just keeps on trucking along. She has surgery and bounces back so quick and ready to go. She will need that for sure to get her through this transplant!
She was sick last week with a sinus infection, both eyes were infected. She seemed to have been getting better, but this morning she is sneezing and sniffling....who knows. We had her CBC done Thursday and they were pretty good. They held for a month, because we had gotten them done right before we left on our trip. Her white cells were 5.4...that's good but a little high for her so I am wondering if that is a sign that something is going on, could be the sinuses are flaring up again. Her hemoglobin was 9.4...for and FAer that's OK, and her platelets were 24 and I think a month ago they were 26, so I am happy with those. I am sure we won't get them done again till we go to Cincinnati.
I'm hoping this week coming, we have no other mishaps and only have one scheduled appointment and that one is for Marshall. We go to the ENT to get a check up and, lucky him, a scope of the sinuses! Amelia has to go to school, she has LEAP testing to do on Tuesday....pray she feels better so she can fully concentrate on this test as her passing depends on it!!!
I'm also praying that when Ty goes back to the doctor on the 31st the doctor releases him back to full duty! We are dying with out the help of those details!!
Well I gotta run we are heading out to another crawfish boil...yeah I know your jealous Stefunk!
We had one last weekend at my mom and dad's and now this weekend yum!!!
Here's what Amelia had for breakfast!! The Breakfast of Champions.....
Thursday, March 18, 2010
Update Coming...
I promise we didn't go into hiding! An update should be coming soon! I have been busy cooking, cleaning and dragging running kids back and forth to the doctor and dentist...maybe tonight since...sniff, sniff....Survivor isn't coming on!!
Monday, March 15, 2010
Almost the last.....
Ok I guess I should go a head and wrap this vacation up! Wednesday was a whole day at sea. The kids all went to there clubs so that left Tyren and I to explore the ship and just hang out. We actually pulled into the port Wednesday night at about 10:30. We didn't get to disembark till the next morning. We got up and headed to breakfast and then to my beloved car!
We decided, since we were there, and it was a Thursday and Ty was off till Monday, to go to the Kennedy Space Center! It was very interesting and of course Nathan loved it, Amelia thought it was boring and well Marshall was just a typical teenager! Here are some pictures from there:
Amelia and Nathan both got a kick out of these pictures:
and a few more:
We decided, since we were there, and it was a Thursday and Ty was off till Monday, to go to the Kennedy Space Center! It was very interesting and of course Nathan loved it, Amelia thought it was boring and well Marshall was just a typical teenager! Here are some pictures from there:
Amelia and Nathan both got a kick out of these pictures:
and a few more:
We spent a few hours there and then we headed north on the interstate till it was time to head west!
Tomorrow I will try to put up some more pictures from the trip.
Thursday, March 11, 2010
Castaway Cay!! Heaven on Earth.....
Castaway Cay was so beautiful...I could live there! Except for on teeny weeny problem......I. HATE. SAND. IN. MY Crevices!!!
Once off the ship we took a picture, the words in purple say this was our room those are our two balconies.
The kids just loved this! A replica of the Flying Dutchman!!!
Donald was waiting for everyone to get off the ship so we stopped and took some pictures with him.
The water was soooooooooo Beautiful. These pictures don't do it Justice!
I was a pretty day and the sun shined all day long, BUT, the water was so cold that it stung when you got in it! I was able to ease my way in to it and once I got in it wasn't so bad. I just wasn't expecting ice water.
The kids didn't seem to mind one bit.
They both loved playing on the beach in the sand.
They had a teen beach, and of course that is where Marshall was and they also had a adult only beach area, but we had so much fun spending time with the kids we didn't put them in the kids club. The kids started to get tired of the sand and wanted to go back on the ship to go to the pool and Ty and I figured that wouldn't be a bad idea since almost every body was on the beach!
The kids love the slide, it took Amelia a little while to warm up to it but she eventually did it.
This is my new Fuji underwater camera, I love it it takes some really good pictures under water and it takes great video it took me a little while to figure out how to video but I eventually got the hang of it.
Tuesday night was our pirate night on the ship. Our dinner was all pirate themed and then later that night they had a big pirate party on the top deck of the ship, with a fire work display and all.
Our waiter made Nathan a pirate hat....
The kids loved him he was so funny!
We didn't get to bed before mid night a single night we were on the ship! Wednesday was just a full day out at sea.
Once off the ship we took a picture, the words in purple say this was our room those are our two balconies.
The kids just loved this! A replica of the Flying Dutchman!!!
Donald was waiting for everyone to get off the ship so we stopped and took some pictures with him.
The water was soooooooooo Beautiful. These pictures don't do it Justice!
I was a pretty day and the sun shined all day long, BUT, the water was so cold that it stung when you got in it! I was able to ease my way in to it and once I got in it wasn't so bad. I just wasn't expecting ice water.
The kids didn't seem to mind one bit.
They both loved playing on the beach in the sand.
They had a teen beach, and of course that is where Marshall was and they also had a adult only beach area, but we had so much fun spending time with the kids we didn't put them in the kids club. The kids started to get tired of the sand and wanted to go back on the ship to go to the pool and Ty and I figured that wouldn't be a bad idea since almost every body was on the beach!The kids love the slide, it took Amelia a little while to warm up to it but she eventually did it.
This is my new Fuji underwater camera, I love it it takes some really good pictures under water and it takes great video it took me a little while to figure out how to video but I eventually got the hang of it.
Tuesday night was our pirate night on the ship. Our dinner was all pirate themed and then later that night they had a big pirate party on the top deck of the ship, with a fire work display and all.
Our waiter made Nathan a pirate hat....
The kids loved him he was so funny!
We didn't get to bed before mid night a single night we were on the ship! Wednesday was just a full day out at sea.
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