Thats the amount of money spent on co-pays since Seth has been born. In 7 months 1107.00 dollars has been spent on co-pays alone for my little guy (not including Sydney) to go to the doctors and specialists. That averages to about 55 doctor visits in 7 months. Seriously????
That is not including medical bills that we have paid or unpaid bills sitting on the counter and prescriptions. After seeing that number alone without calculating the others I knew that we needed to get accepted for long-term care. We have turned in everything that we can for that so I am just waiting for them to call me and do the over the phone interview and see if they will take Seth. I have heard that kids with CVI and seizure disorders have an easier time getting accepted so we just have to wait to see what they say. If you think about it prayers are always welcome especially with this and praying that they state will start covering him!
The Marinellos
Wednesday, February 17, 2010
Tubes.
This Tuesday Seth had to have another hearing test. He actually will have these about every 4-6 months. Anyways he had the hearing test and had too much fluid in his ears and was not hearing at the levels that he should so we were told to come back and see the doctor. When making the appointment they either had a slot available that afternoon or in about 3 weeks. I have realized when you see specialists that there normally is a 2-4 week wait to get in so I actually decided to come back. The doc took a look into his ears and said he needs to get tubes in them. So now we have to get ready for surgery @2. He will get tubes put in his ears March 23rd and while they are already putting him under they actually decided to do a hearing test on him because he needs to be asleep for this kind of test.
Tomorrow morning we have a hematologist appointment to get blood work done. I pray that everything is great and the doctor can sign off again. He did the last time but we needed to see him again this time because his spleen was enlarged again and they want to check his platelet counts and some other things.
The First 6 months of Seth's life were pretty insane. Trying to get a handle on things has been hard for me and it seems like just when I think it might slow down a little bit I get told its not. Seth is just at an age right now where things should be happening developmentally and when they are not more appointments have to come up and that is where we are at right now. So in the meantime I just keep waiting and doing what I need to do for my little boy. As much as I sometimes want to not do the things that need to be done because I am tired, I just remember that Seth needs these things and I need to get up and push through the frustrations, the emotions, and of course being TIRED! But with my husband, my daughter, and friends (LM) I will continue to push through the hard stuff.
Tomorrow morning we have a hematologist appointment to get blood work done. I pray that everything is great and the doctor can sign off again. He did the last time but we needed to see him again this time because his spleen was enlarged again and they want to check his platelet counts and some other things.
The First 6 months of Seth's life were pretty insane. Trying to get a handle on things has been hard for me and it seems like just when I think it might slow down a little bit I get told its not. Seth is just at an age right now where things should be happening developmentally and when they are not more appointments have to come up and that is where we are at right now. So in the meantime I just keep waiting and doing what I need to do for my little boy. As much as I sometimes want to not do the things that need to be done because I am tired, I just remember that Seth needs these things and I need to get up and push through the frustrations, the emotions, and of course being TIRED! But with my husband, my daughter, and friends (LM) I will continue to push through the hard stuff.
Surgery #1 and some other things...
Seth had his first surgery on Feb 11, 2010. He actually had a few things done at once. He got circumcised...which led into a buried penis issue so they had to stitch all around the entire penis. And then he also had two deflux injections it each ureter. Basically they inject gel balls into the ureters to prevent urine flowing back up into the kidneys and causing infection.
He did amazing! The last time I could feed him was 1:20am and his surgery was at 8:30am. He was so hungry when we got to the surgery center. Thank goodness Lisa was able to come with me. She was able to get him to sleep for a little bit before they took him back. He was in surgery for about an hour and Lisa and I just hung out talking about how hungry we were and how tired we were as well. The called us back around 10am and they said everything went great and that he was such a good little boy. After the surgery all he wanted to do was eat so that is exactly what we let him do :) After we were able to go home all Lis and I wanted to do was get something to eat. So we headed to the Good Egg and had some yummy food and Seth just hung with us. You would have never known that he had just been operated on.
He was also AMAZING and such a happy little guy after his surgery. He was great until Sunday afternoon when some of the healing skin came off and we had to start back at the beginning. He was in so much pain Sunday night and he was also off Monday as well.
Here are some pictures from Thursday:
Getting ready for surgery
He was so hungry and all he wanted to do was eat some FOOD!
Trying to get his hand into his mouth in an IV
What a cute little muffin!
This was hours after surgery...he is holding his feet. It has taken him a while but he has found them!
Wednesday, the day before his surgery he had an eye doctor appointment and I was told by his eye doc that Seth's optic nerve in his left eye is not formed all the way and the right eye looks better but since he is still little they can not get an exact measurement of them so all we know is the left is worse than the right but we do not know if the right is fully formed or not. If Seth was not born with cCMV we would have to get testing done to figure out why they were not fully formed but because of the cCMV we know that is why and the Doc said that he was 95% sure that Seth does have CVI (cortical vision impairment). To confirm for sure he would need an MRI and his eye doc does not want to do that unless we really had a reason so we are going to wait until Dr. Bernes, his neurologist, schedules and then we will have the confirmed diagnosis. Our next step is to get in touch with ASDB (Arizona School for the Deaf and Blind) and Foundation for the Blind. There they can help us with what kind of therapies that he can benefit from. I heard it before from another doc that he might have CVI and I actually thought that this was something that we might have to deal with before meeting with the eye specialists but to actually hear it was hard. I know that being blind or considered blind is not the end of the world and that he is still here with me but at the same time it hurts my heart. I just want the best for my little muffin. I know that he is not blind and that he can see somethings, what he can see is unknown and we will not know that until he can actually talk to us. Its just something that is going to take me sometime to process this and be really okay with it.
Surgery #1
Seth had his first surgery on Feb 11, 2010. He actually had a few things done at once. He got circumcised...which led into a buried penis issue so they had to stitch all around the entire penis. And then he also had two deflux injections it each ureter. Basically they inject gel balls into the ureters to prevent urine flowing back up into the kidneys and causing infection.
He did amazing! The last time I could feed him was 1:20am and his surgery was at 8:30am. He was so hungry when we got to the surgery center. Thank goodness Lisa was able to come with me. She was able to get him to sleep for a little bit before they took him back. He was in surgery for about an hour and Lisa and I just hung out talking about how hungry we were and how tired we were as well. The called us back around 10am and they said everything went great and that he was such a good little boy. After the surgery all he wanted to do was eat so that is exactly what we let him do :) After we were able to go home all Lis and I wanted to do was get something to eat. So we headed to the Good Egg and had some yummy food and Seth just hung with us. You would have never known that he had just been operated on.
He was also AMAZING and such a happy little guy after his surgery. He was great until Sunday afternoon when some of the healing skin came off and we had to start back at the beginning. He was in so much pain Sunday night and he was also off Monday as well.
Here are some pictures from Thursday:
Wednesday, the day before his surgery he had an eye doctor appointment and I was told by his eye doc that Seth's optic nerve in his left eye is not formed all the way and the right eye looks better but since he is still little they can not get an exact measurement of them so all we know is the left is worse than the right but we do not know if the right is fully formed or not. If Seth was not born with cCMV we would have to get testing done to figure out why they were not fully formed but because of the cCMV we know that is why and the Doc said that he was 95% sure that Seth does have CVI (cortical vision impairment). To confirm for sure he would need an MRI and his eye doc does not want to do that unless we really had a reason so we are going to wait until Dr. Bernes, his neurologist, schedules and then we will have the confirmed diagnosis. Our next step is to get in touch with ASDB (Arizona School for the Deaf and Blind) and Foundation for the Blind. There they can help us with what kind of therapies that he can benefit from. I heard it before from another doc that he might have CVI and I actually thought that this was something that we might have to deal with before meeting with the eye specialists but to actually hear it was hard. I know that being blind or considered blind is not the end of the world and that he is still here with me but at the same time it hurts my heart. I just want the best for my little muffin. I know that he is not blind and that he can see somethings, what he can see is unknown and we will not know that until he can actually talk to us. Its just something that is going to take me sometime to process this and be really okay with it.
He did amazing! The last time I could feed him was 1:20am and his surgery was at 8:30am. He was so hungry when we got to the surgery center. Thank goodness Lisa was able to come with me. She was able to get him to sleep for a little bit before they took him back. He was in surgery for about an hour and Lisa and I just hung out talking about how hungry we were and how tired we were as well. The called us back around 10am and they said everything went great and that he was such a good little boy. After the surgery all he wanted to do was eat so that is exactly what we let him do :) After we were able to go home all Lis and I wanted to do was get something to eat. So we headed to the Good Egg and had some yummy food and Seth just hung with us. You would have never known that he had just been operated on.
He was also AMAZING and such a happy little guy after his surgery. He was great until Sunday afternoon when some of the healing skin came off and we had to start back at the beginning. He was in so much pain Sunday night and he was also off Monday as well.
Here are some pictures from Thursday:
Getting ready for surgery
He was so hungry and all he wanted to do was eat some FOOD!
Trying to get his hand into his mouth in an IV
What a cute little muffin!
This was hours after surgery...he is holding his feet. It has taken him a while but he has found them!
Wednesday, the day before his surgery he had an eye doctor appointment and I was told by his eye doc that Seth's optic nerve in his left eye is not formed all the way and the right eye looks better but since he is still little they can not get an exact measurement of them so all we know is the left is worse than the right but we do not know if the right is fully formed or not. If Seth was not born with cCMV we would have to get testing done to figure out why they were not fully formed but because of the cCMV we know that is why and the Doc said that he was 95% sure that Seth does have CVI (cortical vision impairment). To confirm for sure he would need an MRI and his eye doc does not want to do that unless we really had a reason so we are going to wait until Dr. Bernes, his neurologist, schedules and then we will have the confirmed diagnosis. Our next step is to get in touch with ASDB (Arizona School for the Deaf and Blind) and Foundation for the Blind. There they can help us with what kind of therapies that he can benefit from. I heard it before from another doc that he might have CVI and I actually thought that this was something that we might have to deal with before meeting with the eye specialists but to actually hear it was hard. I know that being blind or considered blind is not the end of the world and that he is still here with me but at the same time it hurts my heart. I just want the best for my little muffin. I know that he is not blind and that he can see somethings, what he can see is unknown and we will not know that until he can actually talk to us. Its just something that is going to take me sometime to process this and be really okay with it.
Tuesday, February 2, 2010
What's new?
This past month has been a little crazy. The day before we left for vacation Seth had a horrible cough and so I took him into the doctor. He got RSV. So not fun and not what I wanted to hear right before we were heading to Disneyland. The next morning I got the kids up at 6am and sure enough Sydney had a cough so I thought that she was gonna get it as well. We headed out to met up with the Matt, Lisa, and the kids, and Sean and Deni...and on our way Sydney threw-up twice in the car. I was thinking...this is the time to turn around and go home. Once we met up with them and Sydney got out of the car she was acting fine, so we decided to go anways. I have never dealt with that much vomit in my life. In the end she was just car sick and Seth was coughing so hard he would throw up. That was not the only problem on the way. Matt and Lisa's car decided to stop working so they had to find a rental. The rest of Friday, once we got to the house, was fun and quite enjoyable, besides the fact the two of the MacCallum kiddos got pink eye. Again it was the trip from Hell.
Saturday was DL and I went for about 2 hours. At the end of those 2 hours I had vomit all over me from Seth coughing and the "small world" ride had vomit in the water :) I was ready to go back to the house and get Seth down and take a SHOWER. The kids loved DL and really that is what it is all about and they had a great time. They went again on Sunday and Monday we headed back home.
The house that we rented was amazing and I loved it and will for sure rent there again. It was so close to Disneyland and they had everything that we would ever need. All we had to bring were clothes for all of us. They had toys, beds, cribs, strollers, car, shampoo, laundry, movies, ect. It was amazing and the kids had a blast at the house.
Seth is finally over RSV but Sunday morning woke up with pink eye. He has surgery Feb 11th and an eye appointment at the end of the month. He is seeing an OT every week and hopefully soon the physical, speech, feeding therapists weekly as well. It has been a little overwhelming for me but we will get through it.
Sydney is officially potty trained but we are still working on night time. She just drinks too much so we have to make a cut off time for her drinks and make sure she goes to the bathroom right before bed and as soon as she wakes up. We started preschool with her and she does it Monday and Wednesday and then every other Friday. She loves going over to the MacCallum's for school. Lisa already home-school's her oldest so since we are homeschooling our kiddos we decided to do the younger kids together and I would help Drew with math. So far we have been doing this for 2 days and the other days I just do stuff with Sydney on my own.
Besides Sydney being very strong willed she is also pretty funny. The funniest thing lately is...
-She does not understand that her name is Sydney Marinello. So if I say it to her she will say right back, "I'm not a Marinello, I SYDNEY!"
-She does not wait sometimes to take her pants off before getting into the bathroom. She is getting better at it but typically she will drop the pants about 20 feet away from the bathroom and then shuffle the rest of the way.
-Two weeks ago she was on tylenol with codeine and she was a totally different kid and she talked on the phone with Lisa for about 10 mins and it was the funniest thing. She was going on and on about nothing.
We leave this Thursday to go up north with my family. We are going to try and get to snowboard and just hang out together as a family. My mom broke her foot so she will spend most of her time with the grandkids. I really want to get Sydney on a snowboard but I am not sure she will actually do it so I think we might wait another year.
Here are some pictures from DL. Hope you enjoy!
Saturday was DL and I went for about 2 hours. At the end of those 2 hours I had vomit all over me from Seth coughing and the "small world" ride had vomit in the water :) I was ready to go back to the house and get Seth down and take a SHOWER. The kids loved DL and really that is what it is all about and they had a great time. They went again on Sunday and Monday we headed back home.
The house that we rented was amazing and I loved it and will for sure rent there again. It was so close to Disneyland and they had everything that we would ever need. All we had to bring were clothes for all of us. They had toys, beds, cribs, strollers, car, shampoo, laundry, movies, ect. It was amazing and the kids had a blast at the house.
Seth is finally over RSV but Sunday morning woke up with pink eye. He has surgery Feb 11th and an eye appointment at the end of the month. He is seeing an OT every week and hopefully soon the physical, speech, feeding therapists weekly as well. It has been a little overwhelming for me but we will get through it.
Sydney is officially potty trained but we are still working on night time. She just drinks too much so we have to make a cut off time for her drinks and make sure she goes to the bathroom right before bed and as soon as she wakes up. We started preschool with her and she does it Monday and Wednesday and then every other Friday. She loves going over to the MacCallum's for school. Lisa already home-school's her oldest so since we are homeschooling our kiddos we decided to do the younger kids together and I would help Drew with math. So far we have been doing this for 2 days and the other days I just do stuff with Sydney on my own.
Besides Sydney being very strong willed she is also pretty funny. The funniest thing lately is...
-She does not understand that her name is Sydney Marinello. So if I say it to her she will say right back, "I'm not a Marinello, I SYDNEY!"
-She does not wait sometimes to take her pants off before getting into the bathroom. She is getting better at it but typically she will drop the pants about 20 feet away from the bathroom and then shuffle the rest of the way.
-Two weeks ago she was on tylenol with codeine and she was a totally different kid and she talked on the phone with Lisa for about 10 mins and it was the funniest thing. She was going on and on about nothing.
We leave this Thursday to go up north with my family. We are going to try and get to snowboard and just hang out together as a family. My mom broke her foot so she will spend most of her time with the grandkids. I really want to get Sydney on a snowboard but I am not sure she will actually do it so I think we might wait another year.
Here are some pictures from DL. Hope you enjoy!
The Disney House
The play room
The table/kitchen
Tea Party
The candy wall...so much fun
The kids playroom
The gum-ball and bouncy ball machine/the secret passage way
Tarzan room
Princess room
Mickey room
First Day at DL
Walking into the park with the gang
Syd and Topher being goof-balls
Getting ready for day 2
The moms stayed at the house with the younger ones and the men went with the older kids to DL
Saying good-bye to Minnie
Topher...the coolest kid at DL
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