Cody loves to wash his hands.
Close up of Cami with her NG tube in
Kevin, Me & Our Sweet Little Girl
left Tara, right Jax
Closest to camera is Ace, then Jax then TaraWe have been at the Ronald McDonald House since 12/7/10. When you stay at a RMH, you get to stay for 60 days, then you have to check out for at least a week and then if your child is still in the hospital you can come back with a hospital referral. Well, we have been lucky because since there were always rooms available, they let us stay past our 60 days. Well, now they are fully booked and have people on a waiting list. Where does that leave us? Well, we have to go home and then try to come back in a week. The problem with this? Well there are a few.
#1- Gas is at an all time high. I drive an suv and we live over an hour from the hospital. So, I can't afford to drive back and forth every day.
#2- Phone issues. Our cell phones do not work at home. So, if there is an emergency- the hospital cannot get in contact with us. I have to pay the phone company $118.00 (that is a deposit, I paid the amount that we owed them a long time ago) to get our home phone turned back on.
#3- Cody. Cody will have to ride back and forth with me every time I go to see his sister and that is a lot of time being strapped in a car seat. He doesn't watch tv- so putting a movie on will nothing for him.
I am in tears with frustration. The least expensive place to stay in Austin is about $50 a night and that is for a dump. So, we are stuck between a rock and a hard place with no where to go. It will cost about $45 a day in gas plus the approx 3 hours that it takes to make the round trip. That is hard on Cody. He is 20 months old- just a little big boy who likes to move around. It is going to be a complete nightmare to drive back and forth with him. I am darned if I do and darned if I don't. I feel like I am hanging on the side of a cliff and one by one my fingers are losing grip. I don't know what to do. I have to see Cami every day because we do trach care 2 times a day and a complete change 2-3 times a week while in training. (once she comes home trach change will only be 1 time a week but trach care will still be 2 times a day) So, now I have to come up with almost $2k to get all of her equipment. Plus $40 plus a day to go back and forth to see her. That is unless we stay in a hotel, but that is entirely too expensive. *sigh* Sometimes I just feel like giving up.
Regarding the comments about putting Camryn on SSI. The hospital applied for SSI back in November for her. We still do not have a decision yet. Apparently, it can take up to a year or longer to get a child on SSI. The hospital she was born in is the one who applied for it- I didn't even know that they did until we were checking her out of the NICU and learned at that point. We had an appointment in November but I haven't heard from them. When I called them on Thursday I was told that it is still in the "review" process.
Regarding "state" insurance. The hospital Cami was born in applied for that for her. We were turned down due to Kevin's income.
The good news in all of this is that we have a $5k a year max out of pocket. So, even though insurance has paid over a million dollars for my sweet little froggy girl, we are only responsible for $5k in 2010 and $5k in 2011. Except of course we still have to come up with around $2k for the equipment to bring Sissy home.
A while back I got the kids 3 guinea pigs. Cody is so cute. As soon as he wakes up he runs to the Guinea Pig cage and excitedly waves at them saying "hi, picks, hi picks" (he is saying hi PIGS) It is entirely to cute, he makes my heart happy. We watch a show called "S*ons of An*archy" which Kevin loves. So, we named the Guinea Pigs "Jax" (male) "Tara" (female) from that show and then the other is named "Ace" (male) I am getting my males neutered so that I don't have a guinea pig farm though. I had guinea pigs when I was growing up, I also had pet rats. I was thinking about getting the kids a couple of pet rats, but I was scared that the kids would pull his/her tail. I have taught Cody to be gentle to his "picks" He very lightly, using 2 fingers pets them and says "entle momma, entle" (he means "gentle momma, gentle" because that is what I tell him. He is such a loving compassionate little man. I feel so blessed to have him and Cami in my world. I didn't set out to get the guinea pigs when I did- I eventually wanted a couple when the kids were older, but when I went to the store one day there was a lady in front of the store giving them away because her son left for college and left his gp's with her and the female had 2 babies. She just had Tara left and the people walking in the store behind me had about 8 kids and they were trying to get Tara- so I grabbed her up so that she didn't end up hurt/dead at the hands of 8 kids. Well gp's are social creatures and so I had to get Tara a friend. The person I got Jax from told me he was a female- imagine my surprise when I found out that he was a male. (when I actually looked) So, I was happy with Tara and Jax, but then I was going into Pet*co to get gp food, chews and hay and there was a lady outside giving away Ace. Said her son was allergic to him. So, that is how I came to be the mom of 3 gp's. Tara & Ace look a lot alike except that Tara has wavy hair where as Ace has straight hair.
Please keep us in your prayers. I truly need them now.
Thanks & Much Love
#1- Gas is at an all time high. I drive an suv and we live over an hour from the hospital. So, I can't afford to drive back and forth every day.
#2- Phone issues. Our cell phones do not work at home. So, if there is an emergency- the hospital cannot get in contact with us. I have to pay the phone company $118.00 (that is a deposit, I paid the amount that we owed them a long time ago) to get our home phone turned back on.
#3- Cody. Cody will have to ride back and forth with me every time I go to see his sister and that is a lot of time being strapped in a car seat. He doesn't watch tv- so putting a movie on will nothing for him.
I am in tears with frustration. The least expensive place to stay in Austin is about $50 a night and that is for a dump. So, we are stuck between a rock and a hard place with no where to go. It will cost about $45 a day in gas plus the approx 3 hours that it takes to make the round trip. That is hard on Cody. He is 20 months old- just a little big boy who likes to move around. It is going to be a complete nightmare to drive back and forth with him. I am darned if I do and darned if I don't. I feel like I am hanging on the side of a cliff and one by one my fingers are losing grip. I don't know what to do. I have to see Cami every day because we do trach care 2 times a day and a complete change 2-3 times a week while in training. (once she comes home trach change will only be 1 time a week but trach care will still be 2 times a day) So, now I have to come up with almost $2k to get all of her equipment. Plus $40 plus a day to go back and forth to see her. That is unless we stay in a hotel, but that is entirely too expensive. *sigh* Sometimes I just feel like giving up.
Regarding the comments about putting Camryn on SSI. The hospital applied for SSI back in November for her. We still do not have a decision yet. Apparently, it can take up to a year or longer to get a child on SSI. The hospital she was born in is the one who applied for it- I didn't even know that they did until we were checking her out of the NICU and learned at that point. We had an appointment in November but I haven't heard from them. When I called them on Thursday I was told that it is still in the "review" process.
Regarding "state" insurance. The hospital Cami was born in applied for that for her. We were turned down due to Kevin's income.
The good news in all of this is that we have a $5k a year max out of pocket. So, even though insurance has paid over a million dollars for my sweet little froggy girl, we are only responsible for $5k in 2010 and $5k in 2011. Except of course we still have to come up with around $2k for the equipment to bring Sissy home.
A while back I got the kids 3 guinea pigs. Cody is so cute. As soon as he wakes up he runs to the Guinea Pig cage and excitedly waves at them saying "hi, picks, hi picks" (he is saying hi PIGS) It is entirely to cute, he makes my heart happy. We watch a show called "S*ons of An*archy" which Kevin loves. So, we named the Guinea Pigs "Jax" (male) "Tara" (female) from that show and then the other is named "Ace" (male) I am getting my males neutered so that I don't have a guinea pig farm though. I had guinea pigs when I was growing up, I also had pet rats. I was thinking about getting the kids a couple of pet rats, but I was scared that the kids would pull his/her tail. I have taught Cody to be gentle to his "picks" He very lightly, using 2 fingers pets them and says "entle momma, entle" (he means "gentle momma, gentle" because that is what I tell him. He is such a loving compassionate little man. I feel so blessed to have him and Cami in my world. I didn't set out to get the guinea pigs when I did- I eventually wanted a couple when the kids were older, but when I went to the store one day there was a lady in front of the store giving them away because her son left for college and left his gp's with her and the female had 2 babies. She just had Tara left and the people walking in the store behind me had about 8 kids and they were trying to get Tara- so I grabbed her up so that she didn't end up hurt/dead at the hands of 8 kids. Well gp's are social creatures and so I had to get Tara a friend. The person I got Jax from told me he was a female- imagine my surprise when I found out that he was a male. (when I actually looked) So, I was happy with Tara and Jax, but then I was going into Pet*co to get gp food, chews and hay and there was a lady outside giving away Ace. Said her son was allergic to him. So, that is how I came to be the mom of 3 gp's. Tara & Ace look a lot alike except that Tara has wavy hair where as Ace has straight hair.
Please keep us in your prayers. I truly need them now.
Thanks & Much Love
I'm positive you will get SSI for Cami. Here are a couple things you might not know about SSI, you will most likely automaticily qualify Cami for Meicaid/Medicare. You will get a check retroactive from the date you applied. It could easily cover the amount you need for her supplies. I don't know if you have a social worker assigned from the hospital for you but if you do, I suggest asking her if she can look into the SSI issue, it might prod them into approving it. They might send their own doctor to examine her, but since your old hospital applied for you, I imagine they won't.
ReplyDeleteGood luck, it's a long road but there is just no way you won't be approved. Pray it comes sooner rather than later.
God Bless
{{{Christy}}} My thoughts and prayers are with you and your family during this time. Praying that the money you need is provided so that you are able to be with Cami everyday.
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