We are making leaps and bounds progress in getting Raelyn's cochlear implant. Let me share some of the amazing things, we currently have:
1. A Sponsor!!! A local orthodontist has generously agreed to sponsor us so we can have better odds of finding a venue...which we need FAST!
2. A dunking booth! This will be so much fun!
3. A printing company to make fliers.
4. A clown...and the clown has some other fun friends.
5. A face painter.
6. Some stylists. (Not enough yet. We still need MORE!)
7. An offer to have another Shearing for Hearing put together back in Dallas by some amazing friends of mine!!!! (Double the odds of success!!!!)
8. The surgeon involved has agreed to waive his fees so that only the hospital fees will need to be paid.
9. The support of the Olive Osmond Perpetual Hearing Fund. This is HUGE because it helps us to be able to accept donations from people needing it to be a tax deduction.
9. Hope. We have lots and lots of hope. This is what matters most.
Now we need to start getting the donations coming in. As you may have noticed, there is now a "Donation" button in the upper right hand corner of my blog. You can now click it to make donations to help us help Raelyn. Can't make a donation? We'd love it if you'd provide a link to our blog with Raelyn's story on your own blog or Facebook/Twitter page. You can find her story right here. Talk it up, folks! We need your help.
With everyone helping us in one way or another, we can make it so that Raelyn is implanted and activated just in time to truly Hear the Bells on Christmas Day!!!
When a parent learns that their baby or young child has a hearing loss, they are often left feeling alone and unsure what to do. We've been there and done that with one Deaf child already, and we've just started the journey again with our newborn son. In addition, we learned our baby also has NEHI, a rare form of childhood lung disease. We hope that sharing our experiences will help inspire and encourage other parents of children with hearing loss or who may also have NEHI.
Wednesday, July 18, 2012
Friday, July 13, 2012
My Big Brainstorm - "Shearing for Hearing"
This is Raelyn. Can you help me help her hear? |
Every now and then I get a brilliant idea. I'll be honest. It doesn't happen all that often, so it's worth paying close attention when it does happen. This morning was one of those moments when my light bulb came on and I got an idea so brilliant that I haven't been able to sit still since. I'm bound and determined to make this come to fruition.
Liam has a little girl in his class that is kind of his bestie. She's a tiny little thing full of spunk and spirit. She tells him where to go and how to get there and he actually listens. They love to play and giggle together. They find ways to keep their teacher on her toes all the time. My favorite is watching them hug each other every time they get together. For as little as they are, they have a sweet friendship like no other. This little girl is truly a treasure to Liam and I, for one, think she is about the CUTEST thing on two feet.
His little friend has always worn hearing aids. Her mom is a pro at making sure her cute little purple aids always have color coordinated ear molds that are about as girly as possible. Shortly before school let out last spring, the unthinkable happened. She lost more hearing. A lot more hearing. Having been there and done that, I know how heartbreaking that is for a parent to watch and it was no different for her family than it was for mine. The only resource left for her is a cochlear implant. This seems nice and easy and her sweet parents finally made the difficult decision to implant her and then the worst case scenario happened: their insurance doesn't cover implants because they're "cosmetic".
This is where my brilliant idea comes in. This situation has been weighing on my mind for a while because I know what it's like to want desperately to give your child something she NEEDS, but you can't because money stands in the way. I was in the shower this morning when the answer finally came to me. Her mom is a hair dresser, and a very good one at that. In my mind, I can see this amazing event that I'm going to call "Shearing for Hearing". She is going to get as many of her hair dressing friends as she can, and I'm going to work on getting some more on top of that. I'm talking I want an ARMY of hair stylists to be on hand for the loooooong line of hairy people needing to be cleaned up.
My plan is to offer haircuts for $10 donations per head. Of course, customers can donate more (far more) if they'd like. I'm looking at an outside venue like possibly the parking lot of our HOA clubhouse. (We're waiting on the trustees to approve it and then we can move forward.) We'll only offer cuts and no styling or coloring this time. While people wait, we'll have a clown that does balloon animals, hopefully a bounce house (I'm looking for someone to donate one or tell me how to find a fairly cheap rental), and a dunking booth. Since our clubhouse is full of residents who have children who all go to the same school, my plan is to beg and plead with the school principal, music teacher, maybe even the school nurses, and the two most popular 5th grade teachers ever to come sit in the booth. Who doesn't want to soak their favorite educators, right?
The timing couldn't be better. School starts here the 15th of August, so August 11th is the Saturday we're looking at. I know I like my kids to look good just before school starts and $10 each is a great bargain. What could be better?!?!?
I want to go a step further with this. I want to create The Baby Ears Foundation and raise funds to give to other families like this one who just need some help to get their kids the hearing they so deserve. Batteries, warranty renewals, repairs, hearing tests, etc. all add up and are often not covered by insurance. If I have my way, no child will ever go without hearing due to their parents being unable to afford it. It's a long term goal, but I WILL see it through. Mark my words.
In the meantime, I need to get my wheels turning for this first event. I need help.
1. Who knows about donations and tax laws? Do I need to do something special? Can the hair dressers collect the fees and then just gift it to the family or do I have to get some sort of permission? HELP!!
2. A bounce house. I REALLY need one cheap. Anyone know where to start on that one?
3. I need MORE MORE MORE stylists. Badly. Please? It's a great cause.
4. Ideas and things I should know. Do I take only cash so there are no bounced checks or do I just take the risk? What do I need to know?
Okay, readers. I know you're all out there. Help me help someone else.
Labels:
cochlear implant,
Deaf,
friends,
fund raisers,
Liam
Wednesday, July 11, 2012
The Climax Theater
One of my favorite things about CJ is his excitement and zest for life. One of my other favorite things about him is the funny way he hears things and is just sure he heard it precisely right. We had a funny over the weekend that I am still laughing about.
CJ's best buddy from TX and his wife came to see us over the weekend and we took the kids to the science center. There is an IMAX theater there, but CJ always hears it as climax for some reason. He was so excited to tell Jim all about it so Jim would want to go. He explained it with great enthusiasm as he exclaimed, "We have to go to the climax theater! It's huge and it's on every side and it feels like it's all around you!!!". Having the gutter brain that we have, the rest of us in the van could not stop laughing all weekend long.
He also had a follow up to his Canadian/Comedian comment from several months ago. You may remember that he said he wanted to be a Canadian because he's funny and he likes to make people laugh. I replied, "You mean a comedian?"
"Yeah, that's what I said. Canadian."
Anyway, he was reading a book of facts out loud and said to me, "All residents of the country of Canada are called Canadians." Thinking that he finally knew the difference, I nodded and told him that was correct. He shrugged and said, "Hun, they must all be funny there." I give up.
CJ's best buddy from TX and his wife came to see us over the weekend and we took the kids to the science center. There is an IMAX theater there, but CJ always hears it as climax for some reason. He was so excited to tell Jim all about it so Jim would want to go. He explained it with great enthusiasm as he exclaimed, "We have to go to the climax theater! It's huge and it's on every side and it feels like it's all around you!!!". Having the gutter brain that we have, the rest of us in the van could not stop laughing all weekend long.
He also had a follow up to his Canadian/Comedian comment from several months ago. You may remember that he said he wanted to be a Canadian because he's funny and he likes to make people laugh. I replied, "You mean a comedian?"
"Yeah, that's what I said. Canadian."
Anyway, he was reading a book of facts out loud and said to me, "All residents of the country of Canada are called Canadians." Thinking that he finally knew the difference, I nodded and told him that was correct. He shrugged and said, "Hun, they must all be funny there." I give up.
All Hail Liam, the Dictator!
Well, ever since Liam has been on his medicine, we've noticed something very unexpected: an explosion of language. It's a nice surprise, but it also highlights the fact that this little dude is a bit bossy. Actually, he's freakishly bossy. Little booger.
Example Number One: I tried a new recipe I found on Pinterest. It's the one with garlic and brown sugar chicken. It was a complete fail and none of the kids would touch it. I think most of them went and snuck some cereal when I wasn't looking later on. Anyway, I had Liam's plate all set and ready to go for him. His food was lovingly placed to look pretty and his chicken was cut into tiny pieces and it just looked nice. We called him to the table and he promptly came and even seemed a little excited to eat. When he got to his plate, he stopped dead in his tracks. He looked it up and down and then wrinkled his nose in disgust before saying, "I need trash. NOW!" Then, he picked up his plate and walked over to the trash where he promptly disposed of the offending meal like it was no big deal before walking away. The rest of us, of course, sat there looking like idiots and did nothing to stop him. We were too in shock at what had just transpired I think.
Example Number Two: It was Rachel's turn to bless the food for dinner. Everyone folded their arms and respectfully bowed their heads while she said her little prayer. After her prayer, we all said Amen and began eating. Liam took offense to this and let us know it with a whole lot of angry arm waving and "No! LIAM TURN!". He went around to each and every one of us and made us fold our arms and then proceeded to "pray". He went on in complete jibberish for a good fifteen seconds before saying a loud and clear "Amen!". Then he raised his hands to us and said, "Okay, now eat" as if he was granting us permission. See what I mean? Bossy!
Example Number Three: (This one is actually not so bossy, and kind of a breakthrough). At church, we sit with a couple of families that we know and trust who don't mind that our kids wiggle. They're actually very helpful. One of the families has a daughter named Ellie who is one of our favorite baby sitters. Liam loves her. On Sunday this week, he was being a little loud so Byron brought him to me in the lobby. Mindy was crying, so I was already out there. He wasn't being naughty, just loud so he sat with me pretty well for a couple of minutes. Then he got wiggly and became adamant that he wanted to go back in the chapel. I asked him to tell me what he wanted. He slowed down a little, looked at me, and said "I want sit Ellie chair now please". I wanted to be sure I knew what he wanted so I asked him, "You want to sit with Ellie in a chair?" His replied, "Yes!". I asked where and he pointed to the door and said, "In dare". He used a complete sentence to correctly tell me what he wanted and where it was!!!!! THIS IS HUGE!!! I, of course, promptly went to the door and beckoned for Ellie to come take his hand and off they went to sit together for the rest of the meeting.
He's even gotten bossy with the dog. He is constantly telling her to go sit or go into her cage or go lay down. He's very authoritative with her. The dog has this ridiculous squeaky rubber chicken that she can't live without. She would be in heaven if we'd just throw the thing for her all day long so she could fetch it and bring it back to us. It's her FAVORITE toy and nothing else compares. (Trust me. We've tried other toys.) Anyway, Liam got tired of throwing the chicken but the dog wouldn't let up, so he finally took it and locked it in her cage before walking away. That foolish dog stood there barking her head off until I unlocked the cage for her to go in and get it. She took it back and started begging Liam to throw it again and he decided it was time to take drastic measures. He took that chicken and shoved it into the arm rest compartment of our sectional couch and walked away. Again, the dog stood there a little bewildered and barking at the couch. Anyone walking in would have thought the house was haunted and the dog was barking at a ghost.
So, there you have it. Liam's behavior is improving, but he's turning into quite the little bossy pants.
Example Number One: I tried a new recipe I found on Pinterest. It's the one with garlic and brown sugar chicken. It was a complete fail and none of the kids would touch it. I think most of them went and snuck some cereal when I wasn't looking later on. Anyway, I had Liam's plate all set and ready to go for him. His food was lovingly placed to look pretty and his chicken was cut into tiny pieces and it just looked nice. We called him to the table and he promptly came and even seemed a little excited to eat. When he got to his plate, he stopped dead in his tracks. He looked it up and down and then wrinkled his nose in disgust before saying, "I need trash. NOW!" Then, he picked up his plate and walked over to the trash where he promptly disposed of the offending meal like it was no big deal before walking away. The rest of us, of course, sat there looking like idiots and did nothing to stop him. We were too in shock at what had just transpired I think.
Example Number Two: It was Rachel's turn to bless the food for dinner. Everyone folded their arms and respectfully bowed their heads while she said her little prayer. After her prayer, we all said Amen and began eating. Liam took offense to this and let us know it with a whole lot of angry arm waving and "No! LIAM TURN!". He went around to each and every one of us and made us fold our arms and then proceeded to "pray". He went on in complete jibberish for a good fifteen seconds before saying a loud and clear "Amen!". Then he raised his hands to us and said, "Okay, now eat" as if he was granting us permission. See what I mean? Bossy!
Example Number Three: (This one is actually not so bossy, and kind of a breakthrough). At church, we sit with a couple of families that we know and trust who don't mind that our kids wiggle. They're actually very helpful. One of the families has a daughter named Ellie who is one of our favorite baby sitters. Liam loves her. On Sunday this week, he was being a little loud so Byron brought him to me in the lobby. Mindy was crying, so I was already out there. He wasn't being naughty, just loud so he sat with me pretty well for a couple of minutes. Then he got wiggly and became adamant that he wanted to go back in the chapel. I asked him to tell me what he wanted. He slowed down a little, looked at me, and said "I want sit Ellie chair now please". I wanted to be sure I knew what he wanted so I asked him, "You want to sit with Ellie in a chair?" His replied, "Yes!". I asked where and he pointed to the door and said, "In dare". He used a complete sentence to correctly tell me what he wanted and where it was!!!!! THIS IS HUGE!!! I, of course, promptly went to the door and beckoned for Ellie to come take his hand and off they went to sit together for the rest of the meeting.
He's even gotten bossy with the dog. He is constantly telling her to go sit or go into her cage or go lay down. He's very authoritative with her. The dog has this ridiculous squeaky rubber chicken that she can't live without. She would be in heaven if we'd just throw the thing for her all day long so she could fetch it and bring it back to us. It's her FAVORITE toy and nothing else compares. (Trust me. We've tried other toys.) Anyway, Liam got tired of throwing the chicken but the dog wouldn't let up, so he finally took it and locked it in her cage before walking away. That foolish dog stood there barking her head off until I unlocked the cage for her to go in and get it. She took it back and started begging Liam to throw it again and he decided it was time to take drastic measures. He took that chicken and shoved it into the arm rest compartment of our sectional couch and walked away. Again, the dog stood there a little bewildered and barking at the couch. Anyone walking in would have thought the house was haunted and the dog was barking at a ghost.
So, there you have it. Liam's behavior is improving, but he's turning into quite the little bossy pants.
Labels:
ADHD,
Deaf,
language acquisition,
Liam,
medication
Tuesday, July 3, 2012
Well, We Tried it And...
I posted last week about a really hard choice I had to make on Liam's behalf. The discussion surrounded the fact that Liam was really having a hard time controlling his impulses and, as a result, was sometimes putting himself and even others into danger. Our pediatrician has been encouraging us to consider some ADHD medicine to help him with these impulses and I'd been resisting it. Finally, I had decided to give in a little bit and consider trying it especially after having Byron's encouragement and hearing that his school was also on the same page.
With all that in mind, I went ahead and gave him his first dose on Thursday morning. So far, this is what has happened:
1. Liam has pooped in the potty by his own choice. Repeatedly.
2. Liam came grocery shopping with me and was delightful. We talked and giggled and he followed my instructions to put things in the buggy.
3. Liam had a potty accident and came to my door to tell me about it rather than painting with it, which would be his usual choice.
4. At church, Liam sat so nicely that a visitor sitting by him leaned over and told us that he is a "Model kid and so well-behaved." Yeah, we got a good giggle at that one.
There are some down sides. When the medicine wears off, he is like a total wild man (or maybe he's just himself and we never noticed how bad things really were?). His appetite is somewhat suppressed. I still worry about the long-term affects of giving this kind of medicine to a child three years younger than it's intended for.
So, there is our update. These are just baby steps and I'm sure we've still got a mountain to tackle, but I think things are looking up. Dare I say they're looking hopeful even?
With all that in mind, I went ahead and gave him his first dose on Thursday morning. So far, this is what has happened:
1. Liam has pooped in the potty by his own choice. Repeatedly.
2. Liam came grocery shopping with me and was delightful. We talked and giggled and he followed my instructions to put things in the buggy.
3. Liam had a potty accident and came to my door to tell me about it rather than painting with it, which would be his usual choice.
4. At church, Liam sat so nicely that a visitor sitting by him leaned over and told us that he is a "Model kid and so well-behaved." Yeah, we got a good giggle at that one.
There are some down sides. When the medicine wears off, he is like a total wild man (or maybe he's just himself and we never noticed how bad things really were?). His appetite is somewhat suppressed. I still worry about the long-term affects of giving this kind of medicine to a child three years younger than it's intended for.
So, there is our update. These are just baby steps and I'm sure we've still got a mountain to tackle, but I think things are looking up. Dare I say they're looking hopeful even?
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