We would like to wish everyone a Happy and safe holiday! We hope you enjoy your time with friends and family and that 2010 is the best year ever!
Thank you for following our blog! We appreciate the interest and hope that in the next year we can continue to get better at this blogging thing and post not only info. about our family, but info. you may find useful. We hope to connect with more individuals with cerebral palsy and/or family members/friends of individuals with cerebral palsy. If you know of anyone who may be interested in following along, please invite them. Additionally, if you have any input or ideas, information you would like to see, please contact us and let us know. We're open to new input and ideas and are always looking to learn new things about this disability ourselves. There is always more to learn!
On another note, I must share something that happened yesterday. My Dad, Nick's PaPa, picked him up from wrestling practice and said that Nick was walking while the others were running laps and that he actually started "jogging" for a little bit. I asked, "what do you mean?" because this never crossed my mind as a possibility, ever. I mean, it is tough enough for Nick to walk and although I knew his walking has been improving, well, I just never thought of "jogging". My Dad said, YES HE WAS, he was jogging. We were thrilled and I looked at Nick with this look of exhaustion and pride in his face. Priceless. I can't wait to see this for myself. He continues to shock and inspire us with his strength and fierce determination.
Blessings:)
Amy
Tuesday, December 22, 2009
Wednesday, December 16, 2009
December 2009 update
Hi everyone!December is always so busy for us and this December is no exception! (I'm sure many of you can relate!)
We are all finally healthy and rid of the flu. We started out this month with Isabella's fourth grade holiday program which was fantastic. They sang and played the recorder and did great. We had "Santa and his helper", Uncle Frank and Aunt Marcia (Frank plays Santa for a lot of area events!), come to my parent's home and we had a fun day with the family, our nieces and nephews, and Nick's friend, Shannon, joined us. Isabella had a dance performance at Levis
Commons and got to see Santa there as well with her dance group. We also celebrated Christmas already with Greg's side of the family last weekend as everyone is unable to get together on Christmas or lives out of town, etc. The kids have had lots going on at school (projects, reports, etc.) as they are getting ready for the holiday break. Combined with the usual family activities, it seems like every day in December, at least the weekends, is double or triple booked. We were not able to make it to several of the Christmas parties we normally go to as they were on the same day as other events, etc.
One big thing going on this month is Nick's wrestling. I wrote previously about Nick joining the wrestling team at Perrysburg High School. After having the flu, he got back into practice. It's been tough on him because it is a tough sport and tough on everyone and then with having cerebral palsy, the physical pain and exhaustion has been difficult to watch. He is loving it though. He had a couple of matches so far and lasted 19 and 14 seconds, then 2 min. 24 seconds. While I think he's disappointed at that and kept apologizing to the coaches and team, we reminded him that he's never wrestled before (this is brand new), he's just started, and he has cerebral palsy to top it off, so he has to use different techniques, etc . No matter what, it's not good or bad, it's just a fact, the CP is always a factor and it seems as if Nick doesn't think about that. The first match, last Thursday December 10th, as a mother, I was practically in tears over the anticipation and waiting. It's not easy to watch someone doing those things to your child at all. I did ok though and was so happy for him! My Dad was crying when it was over just because Nick did it. ( me almost too!) He's so determined to do this. I have to admit, I am not "loving" it as a "mom" but I totally support Nick and his decision on this 100% and from his writings, I know why he is doing it and understand it. (see previous blog where I included Nick's writing about this!) So, we continue to take it day by day, week by week, and see where it goes. However it turns out in the end, Nick has done it. We hope to get some video of it and I hope to be able to put that on the computer and on this blog in the future. One side note....Nick's walking is probably the best it's ever been. It's probably because of the working out and his gaining strength, but I was shocked when I saw him walk out to and from his match! WOW!!!! It's hard to explain this but when you get a picture of someone in your head, I am so used to seeing Nick in his wheelchair, in his Segway, or his walker. I am not used to seeing him standing up straight, walking without any assistance or equipment, no leg braces, just walking, and not falling. I was stunned and speechless really. It took my breath away!:) This was different than his walking I've seen prior to this. It was stronger, more stable, and it's hard to picture but now I can't get that picture out of my head. Anyhow, GO NICK!!!!!!:)
I can't believe it's December 16th and I have not even thought about Christmas Cards yet! Last year, Nick was doing intensive rehab. Thanksgiving through the New Year, five or six days a week, about five hours a day, so we never got to it. I don't have that excuse this year! Time is just flying by and the month is filled with fun, but a lot of activities! I can't wait to have the kids home over Christmas break and to spend time with them:)
I want to thank everyone for reading the blog and keeping up with us. I hope to get more readers this year and to make contact with others, which was one of the main reasons I started this blog. I hope everyone is having a wonderful month so far! I'll be writing more soon!
Blessings:)
Amy
Friday, December 4, 2009
"The Dog Ate The Hearing Aid" and "The Drowning"
In 2001, when Nick was 8-years old and in the third grade, he was diagnosed with a bilateral progressive hearing loss.
To be honest, we took it pretty hard. We had 8 years to kind of get used to the idea that he had cerebral palsy and at that point, we kind of knew what that meant for HIM. Although we still today go through ups and downs emotionally regarding Nick's disability, over time, it does get easier and you choose to live your life in the best way possible. Anyhow, it felt like a shock to us, a smack in the face, although it shouldn't have been.
We thought Nick took more time to respond to people because of his cerebral palsy. He did have more difficulty getting his words out. Then someone asked us when we last had his hearing checked. We couldn't even remember the last time, in part because of everything else Nick always had going on (appointments, therapy, etc.). We took him, not really expecting a problem and we were wrong. We should have remembered that when Nick was an infant and he had the jaundice (which caused the brain damage which caused the CP), we had to do a full exchange transfusion of his blood, literally, to save his life at the time. (long story, a lot of medical details I won't get into!) We had to sign a paper saying we understood this could cause nerve damage to his ears, among lots of other things and our focus was on saving his life. We just forgot about that I guess with so many other things going on. So, we had this whole new disability in and of itself to learn about, deal with, etc. That was why it was harder for us I guess.
We educated ourselves once again, reading books, etc. Nick at the time had a mild hearing loss in one ear and a moderate hearing loss in the other. After seeing an ENT who specializes in hearing impairment, he confirmed Nick had nerve damage and that his hearing loss would be progressive to the point he'll eventually "lose his hearing" per the doctor. He added that Nick would be a good candidate for a cochlear implant (CI) when that time came. You have to have a profound hearing loss to get a CI.
Nick needed hearing aides. We soon found out that our insurance (and most others) do not cover hearing aides as they are not medically necessary. We felt (and still feel) that Nick's hearing was necessary, especially while in school, and he couldn't sign due to his fine motor delays from the cerebral palsy, etc. So, we ordered the hearing aides and paid $5600 for the pair of digital hearing aides, which are best because they can be adjusted and take out background noise. (hearing aides will often pick up ALL noises, even ones you don't want them to!) It was a lot of money for us then and just to note, we just bought his third pair this year. Then we bought a $3600 FM system so he could use this to hear people speaking, focus on them, etc. Nick (and Bella) are worth it, but this was a lot of money for us, and we had to make a lot of other sacrifices I won't go into to get these. It was stressful for us adjusting to Nick's hearing loss, the financial stress of the hearing aides, and the care of them too. Of course, we never told Nick of that and he still doesn't know.
We did stress with Nick though that these hearing aides and the FM system did cost a lot of money and were hard to get and he had to take care of them. He couldn't take them out and set them down anywhere, etc. because we didn't want him to lose them. We did insure them, etc. We stressed this a lot.
The VERY FIRST DAY Nick had his new hearing aides, our boston terrier, Oreo, came up to Nick, who always is on the floor at home, was licking Nick's face, licked his ear, took out the hearing aid, bit into it and started chewing it all before we could get a sentence out! It was like it was in slow motion. I was watching the whole thing. I can't even explain the horror of it all. I screamed, which scared Nick and Oreo, Oreo spit out the chewed up hearing aid, I did tell Nick it wasn't his fault, but then Greg and I were crying. Just thinking of the cost of them, we just got them, etc., got the ear molds fitted for Nick's ears, etc. We had to call the audiologist and tell them, "the dog ate the hearing aid"!!! Luckily for us, we only had to pay 10% of one, $280, to get it fixed, which was a lot of money to me at the time too! But, it was better than $2800 I guess. Anyhow, at the time, it wasn't funny at all, but now we laugh about it.
Then one day later that school year, Nick came home and had no hearing aides. He said he took them out because they were bothering him and the substitute para-professional "put them somewhere" and they couldn't find them before he left school. I was not happy with him. I lost it and immediately raised my voice, telling him how irresponsible that was and if they are lost, he would be grounded. We were both upset. I looked through everything, called the school, left a voice mail. Luckily for me, the principal got the message after hours, went into the classroom and found the hearing aides on top of a tall cabinet, called me. I told Nick and I told him I was sorry for raising my voice and to please be more careful. He seemed fine. He didn't seem upset. We went on with our evening. After dinner, Greg was giving Nick a bath. Greg was telling Nick that he had to be careful and not take his hearing aides out and if he did, to put them in the storage unit we gave him, like we always told him. Nick then told Greg, "Yeah, Mom was so mad at me she said she would drown me if we didn't find them!" Well, as you can imagine, Greg immediately told me this, I of course, was mortified and clarified this with them and we all laughed so hard. I just couldn't get it out of my mind that my son would think I could even say such a thing to him. I had lots of talks with him and felt so badly that he thought this. He just laughed every time I brought it up! Not to mention, I didn't want him telling people this. Can you imagine Children's Services getting a call if someone didn't hear the whole story? I didn't tell anyone this for awhile, but it ended up being so funny to us, we just had to tell the story!:) I told Nick, boy, I guess you really do need these hearing aides:)
We have so many stories like this. Sometimes, having sense of humor and being able to laugh at the ridiculousness of the situation helps a lot. Otherwise, I think we'd lose it at times!
The whole hearing aid situation, the cost, not being covered by insurance, is something that makes us really angry when we let it. We have of course, appealed, looked into it, talked to anyone we could think of, contacted agencies. We don't qualify for anything. It's just something we have to accept and we do because Nick needs it and to us, there is no other option. It's too important! I don't think a lot of people realize how many things like this are not covered by insurance. They enhance the quality of life so much and are not considered medically necessary. I guess you don't know until you go through it or know someone personally.
I hope you enjoyed these little stories. A few of many. I'll tell more later.........
Blessings:)
Amy
To be honest, we took it pretty hard. We had 8 years to kind of get used to the idea that he had cerebral palsy and at that point, we kind of knew what that meant for HIM. Although we still today go through ups and downs emotionally regarding Nick's disability, over time, it does get easier and you choose to live your life in the best way possible. Anyhow, it felt like a shock to us, a smack in the face, although it shouldn't have been.
We thought Nick took more time to respond to people because of his cerebral palsy. He did have more difficulty getting his words out. Then someone asked us when we last had his hearing checked. We couldn't even remember the last time, in part because of everything else Nick always had going on (appointments, therapy, etc.). We took him, not really expecting a problem and we were wrong. We should have remembered that when Nick was an infant and he had the jaundice (which caused the brain damage which caused the CP), we had to do a full exchange transfusion of his blood, literally, to save his life at the time. (long story, a lot of medical details I won't get into!) We had to sign a paper saying we understood this could cause nerve damage to his ears, among lots of other things and our focus was on saving his life. We just forgot about that I guess with so many other things going on. So, we had this whole new disability in and of itself to learn about, deal with, etc. That was why it was harder for us I guess.
We educated ourselves once again, reading books, etc. Nick at the time had a mild hearing loss in one ear and a moderate hearing loss in the other. After seeing an ENT who specializes in hearing impairment, he confirmed Nick had nerve damage and that his hearing loss would be progressive to the point he'll eventually "lose his hearing" per the doctor. He added that Nick would be a good candidate for a cochlear implant (CI) when that time came. You have to have a profound hearing loss to get a CI.
Nick needed hearing aides. We soon found out that our insurance (and most others) do not cover hearing aides as they are not medically necessary. We felt (and still feel) that Nick's hearing was necessary, especially while in school, and he couldn't sign due to his fine motor delays from the cerebral palsy, etc. So, we ordered the hearing aides and paid $5600 for the pair of digital hearing aides, which are best because they can be adjusted and take out background noise. (hearing aides will often pick up ALL noises, even ones you don't want them to!) It was a lot of money for us then and just to note, we just bought his third pair this year. Then we bought a $3600 FM system so he could use this to hear people speaking, focus on them, etc. Nick (and Bella) are worth it, but this was a lot of money for us, and we had to make a lot of other sacrifices I won't go into to get these. It was stressful for us adjusting to Nick's hearing loss, the financial stress of the hearing aides, and the care of them too. Of course, we never told Nick of that and he still doesn't know.
We did stress with Nick though that these hearing aides and the FM system did cost a lot of money and were hard to get and he had to take care of them. He couldn't take them out and set them down anywhere, etc. because we didn't want him to lose them. We did insure them, etc. We stressed this a lot.
The VERY FIRST DAY Nick had his new hearing aides, our boston terrier, Oreo, came up to Nick, who always is on the floor at home, was licking Nick's face, licked his ear, took out the hearing aid, bit into it and started chewing it all before we could get a sentence out! It was like it was in slow motion. I was watching the whole thing. I can't even explain the horror of it all. I screamed, which scared Nick and Oreo, Oreo spit out the chewed up hearing aid, I did tell Nick it wasn't his fault, but then Greg and I were crying. Just thinking of the cost of them, we just got them, etc., got the ear molds fitted for Nick's ears, etc. We had to call the audiologist and tell them, "the dog ate the hearing aid"!!! Luckily for us, we only had to pay 10% of one, $280, to get it fixed, which was a lot of money to me at the time too! But, it was better than $2800 I guess. Anyhow, at the time, it wasn't funny at all, but now we laugh about it.
Then one day later that school year, Nick came home and had no hearing aides. He said he took them out because they were bothering him and the substitute para-professional "put them somewhere" and they couldn't find them before he left school. I was not happy with him. I lost it and immediately raised my voice, telling him how irresponsible that was and if they are lost, he would be grounded. We were both upset. I looked through everything, called the school, left a voice mail. Luckily for me, the principal got the message after hours, went into the classroom and found the hearing aides on top of a tall cabinet, called me. I told Nick and I told him I was sorry for raising my voice and to please be more careful. He seemed fine. He didn't seem upset. We went on with our evening. After dinner, Greg was giving Nick a bath. Greg was telling Nick that he had to be careful and not take his hearing aides out and if he did, to put them in the storage unit we gave him, like we always told him. Nick then told Greg, "Yeah, Mom was so mad at me she said she would drown me if we didn't find them!" Well, as you can imagine, Greg immediately told me this, I of course, was mortified and clarified this with them and we all laughed so hard. I just couldn't get it out of my mind that my son would think I could even say such a thing to him. I had lots of talks with him and felt so badly that he thought this. He just laughed every time I brought it up! Not to mention, I didn't want him telling people this. Can you imagine Children's Services getting a call if someone didn't hear the whole story? I didn't tell anyone this for awhile, but it ended up being so funny to us, we just had to tell the story!:) I told Nick, boy, I guess you really do need these hearing aides:)
We have so many stories like this. Sometimes, having sense of humor and being able to laugh at the ridiculousness of the situation helps a lot. Otherwise, I think we'd lose it at times!
The whole hearing aid situation, the cost, not being covered by insurance, is something that makes us really angry when we let it. We have of course, appealed, looked into it, talked to anyone we could think of, contacted agencies. We don't qualify for anything. It's just something we have to accept and we do because Nick needs it and to us, there is no other option. It's too important! I don't think a lot of people realize how many things like this are not covered by insurance. They enhance the quality of life so much and are not considered medically necessary. I guess you don't know until you go through it or know someone personally.
I hope you enjoyed these little stories. A few of many. I'll tell more later.........
Blessings:)
Amy
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