Friday, November 11, 2011
So i am a complete wreck. yesterday could have been one of the worst days i have had in a long time! I have been stressing out about how we are going to pay for these surgeries. currently we have tricare with the military but i am really unhappy with it for several reasons. I feel like no one there actually cares if something is wrong about Rory. We have had consistently poor care with them, so much so that i had to fill out a waver for her to see a non-military primary care manager (who took care of her immediately and is everything i had hoped her pediatrician would be).
We found out a few things lately that have made me a bit nuts, first is Rory's first surgery, its in September which is fine, but its going to be around 9 hours and around $300,000. I honestly, can’t even think about that much money- and so we are already talking with tricare on how to handle it... of course now tricare doesn't’ want to send us to her doctor in Florida anymore. This doctor we go has created the surgery for her, he is the best doctor in the world to go to and she IS going to him one way or another. I had to fight them to send us to her doctor with her first tricare orthopedist, just because its all about money to them and less about caring for patients. So I'm going to have to fight again- its just so upsetting to me- because it took so long for me to fight and write letters and get second opinions, and now i have to do it all over with her new orthopedist. Its just heartbreaking to realize that people really don’t care, i have even explained to them that if anything goes wrong with any surgeries or anything the only way to fix it is amputation but that means nothing to them. I just can't believe they don't want to send her to Dr. Paley because of costs.
So...one of our options is to re-enlist for the military. This is of course the worst option for me. I have had May 17, 2013 in my head as a a day for celebration knowing that I could actually move closer to my family and get my own home, a garden, a tree house for Rory, and be able to work on my house. I 100% want out of the military but obviously if it is what we are going to have do for Rory then its what I'm going to do. Jon hasn’t been deployed yet..so if we do rejoin he is going to be deployed. He knows it too, it is inevitable that he can go along and not be deployed. It is fear of mine to be alone with Rory because i am going to need Jon or my mom here to help. I keep thinking its going to be like after Rory was born how we got in the car and were like," ok...now what." I'm not sure Jon realizes how much I am going to need him and my family around emotionally during all this.
We found out a few things lately that have made me a bit nuts, first is Rory's first surgery, its in September which is fine, but its going to be around 9 hours and around $300,000. I honestly, can’t even think about that much money- and so we are already talking with tricare on how to handle it... of course now tricare doesn't’ want to send us to her doctor in Florida anymore. This doctor we go has created the surgery for her, he is the best doctor in the world to go to and she IS going to him one way or another. I had to fight them to send us to her doctor with her first tricare orthopedist, just because its all about money to them and less about caring for patients. So I'm going to have to fight again- its just so upsetting to me- because it took so long for me to fight and write letters and get second opinions, and now i have to do it all over with her new orthopedist. Its just heartbreaking to realize that people really don’t care, i have even explained to them that if anything goes wrong with any surgeries or anything the only way to fix it is amputation but that means nothing to them. I just can't believe they don't want to send her to Dr. Paley because of costs.
So...one of our options is to re-enlist for the military. This is of course the worst option for me. I have had May 17, 2013 in my head as a a day for celebration knowing that I could actually move closer to my family and get my own home, a garden, a tree house for Rory, and be able to work on my house. I 100% want out of the military but obviously if it is what we are going to have do for Rory then its what I'm going to do. Jon hasn’t been deployed yet..so if we do rejoin he is going to be deployed. He knows it too, it is inevitable that he can go along and not be deployed. It is fear of mine to be alone with Rory because i am going to need Jon or my mom here to help. I keep thinking its going to be like after Rory was born how we got in the car and were like," ok...now what." I'm not sure Jon realizes how much I am going to need him and my family around emotionally during all this.
So i have been looking at ways for us to go around it- I have been up almost all night going online and calling people during her naps to see if there is some kind of social security, medicaid, or program to help with the upcoming bills. I just feel so helpless because a lot of companies base it on income and Jon makes enough to support us now. I really hate not knowing what is going to happen and want to find the best possible solution for Rory. I feel like I'm failing at this because i have no idea even where to start.
I have called the hospital but they seem to think I'm speaking another language. I have tried social security and other programs but they are all or people who make hardly any money. Jon makes fine money to support us now- however we have 3 and possibly 4 surgeries ahead of us and are really going to need help.
I was literally crying on the floor during Rory's nap when the door bell rang. It was a package from 6pm and in it was adorable boots from my sister Lauren. it made my day...i stopped crying for a while to try on the boots.... I have the best family ever!
All of this stress has caused me to eat...guess who is feeling sad and fat lately...blah
I have called the hospital but they seem to think I'm speaking another language. I have tried social security and other programs but they are all or people who make hardly any money. Jon makes fine money to support us now- however we have 3 and possibly 4 surgeries ahead of us and are really going to need help.
I was literally crying on the floor during Rory's nap when the door bell rang. It was a package from 6pm and in it was adorable boots from my sister Lauren. it made my day...i stopped crying for a while to try on the boots.... I have the best family ever!
All of this stress has caused me to eat...guess who is feeling sad and fat lately...blah
I'm still calling daily to try to get my phone because i have lost all my contacts and everything! We also got Rory's shoes done- i think we can pick them up today or tomorrow- they are so cute, green adidas with pink stripes!
Sunday, November 6, 2011
Today was daylight savings time and I was really hoping to get a nice extra hour of sleep... However I forgot that rory has no concept of daylight savings time! So there was no sleeping in or lounging the the glory of having an extra hour- we had crazy pants running around the house for an extra hour! She gets so tired But doesn't want to sleep- it's funny how she fights sleep so much!
Some days when she's crazy I think I'm losing my mind- however she will do the sweetest things ever and make me want to cry...for example- she gets up from her second nap and doesn't want to be put down- jus wants mommy to carry her, which is fine I don't mind, but she was getting kind of fussy and I really wanted to put her down because my arms were getting tired- when all of the sudden she puts her hands on my face, moves my head and gives me a big kiss right on the lips- and life doesn't get any better.
Example #2 we are reading books and now she can sign dada- and everyone is dada- mama, Mimi and papa are oth acknowelged by her significant dada. We really don't care yet because it's so darn cute and we know she will pick up on the other signs soon. Anyway, we are looking at books and she sees dada and signs for him and then sees mama and I said "rory can you sign mama" and she just said "mama" looked At me and smiled...I felt so warm and snuggly inside like I had been drinking hot chocolate and watching Christmas movies under a blanket all day.
I think she knows how to work her mama!
Some days when she's crazy I think I'm losing my mind- however she will do the sweetest things ever and make me want to cry...for example- she gets up from her second nap and doesn't want to be put down- jus wants mommy to carry her, which is fine I don't mind, but she was getting kind of fussy and I really wanted to put her down because my arms were getting tired- when all of the sudden she puts her hands on my face, moves my head and gives me a big kiss right on the lips- and life doesn't get any better.
Example #2 we are reading books and now she can sign dada- and everyone is dada- mama, Mimi and papa are oth acknowelged by her significant dada. We really don't care yet because it's so darn cute and we know she will pick up on the other signs soon. Anyway, we are looking at books and she sees dada and signs for him and then sees mama and I said "rory can you sign mama" and she just said "mama" looked At me and smiled...I felt so warm and snuggly inside like I had been drinking hot chocolate and watching Christmas movies under a blanket all day.
I think she knows how to work her mama!
Saturday, November 5, 2011
So it's official I have "come out of the closet". I actually posted about Rory's condition on facebook. I've pretty much been hush hush about her condition but now it is what it is and it's not going to change at all. A lot of people back home don't now about it because I'm not there aNd they don't see Rory so they don't know about her shoe or anything. I've come up with the conclusion that if anyone really cares they can ask me about it.
There are alot of shallow people out there- but they all seem pretty petty to me anymore.
In other news.... I learned a lot about finances. Rorys first surgery is going to cost...brace your self...sit down...around $300,000. I can't even think about that much money. I'm not even sure if that much money looks the same as the dollars bills in my purse! We don't have to worry too much about the first surgery because Jon will still be inn the military however; her second and third surgery he will be out (hopefully).
Now we are considering Staying in the military for the second surgery just for insurance purposes....
Someone is not happy about this decision....but what am I going to do....it's my daughter! So who knows....I am going to look into social security an a few other options because I still want to be able to give her at good Christmas and birthday and I'd like to be able to have money to buy her food!
There are alot of shallow people out there- but they all seem pretty petty to me anymore.
In other news.... I learned a lot about finances. Rorys first surgery is going to cost...brace your self...sit down...around $300,000. I can't even think about that much money. I'm not even sure if that much money looks the same as the dollars bills in my purse! We don't have to worry too much about the first surgery because Jon will still be inn the military however; her second and third surgery he will be out (hopefully).
Now we are considering Staying in the military for the second surgery just for insurance purposes....
Someone is not happy about this decision....but what am I going to do....it's my daughter! So who knows....I am going to look into social security an a few other options because I still want to be able to give her at good Christmas and birthday and I'd like to be able to have money to buy her food!
Friday, November 4, 2011
Today, I sent the surgery date.
It is official. She gets her first surgery on September 13, 2012. I can't believe its only 10 months away. I am not sure how I am going to handle it all!
And I'm not sure if i was just overly sensitive because i actually set the surgery date or if Rory was just our of her element because she was crazy today! After her first nap she was just everywhere and was running crazy and after her second nap all she wanted was for me to hold her. I tried to get out of the house for a bit by taking her to the library but we ended up only getting gas and then coming home....
i think I'm just really tired and worried...10 months and then the first surgery...geez that's soon. I did want to make sure she had the surgery and then could go trick or treating...
We have had such a good week, shes back to her normal Rory self, so one crazy day is expected.
shes playing with her glo worm now in her crib, and even though I'm enjoying her being away, I almost want to wake her up and just hold her...
It is official. She gets her first surgery on September 13, 2012. I can't believe its only 10 months away. I am not sure how I am going to handle it all!
And I'm not sure if i was just overly sensitive because i actually set the surgery date or if Rory was just our of her element because she was crazy today! After her first nap she was just everywhere and was running crazy and after her second nap all she wanted was for me to hold her. I tried to get out of the house for a bit by taking her to the library but we ended up only getting gas and then coming home....
i think I'm just really tired and worried...10 months and then the first surgery...geez that's soon. I did want to make sure she had the surgery and then could go trick or treating...
We have had such a good week, shes back to her normal Rory self, so one crazy day is expected.
shes playing with her glo worm now in her crib, and even though I'm enjoying her being away, I almost want to wake her up and just hold her...
