Madelyn had her appointment with her doctor yesterday to make sure that everything had healed properly after her surgery. If it all looked well, she would get her processor (hearing aid) all set up. The skin graft had healed very well & so we were all so very excited, fully expecting Madelyn to come home with her hearing aid all set to go. Her teacher has been so great, getting the entire class involved, letting Madelyn tell them all about her surgeries, etc. She really wanted to make sure that the kids knew all about it so that there would be no curiosity (which is usually what feeds teasing at their age) & got them all so excited about the fact that this cool little thing would help Madelyn hear out of that ear. They were all so excited for her. Unfortunately, there was a scab from a stitch that fell off a few days ago & took a chunk of skin with it. The doctor says that can happen because that flap of skin has been lifted up twice & is very sensitive. He wants that to heal completely before we get her processor set up...one month:( I have never seen Madelyn so disappointed before. She cried herself to sleep on the way home & then cried again when we got home. I am absolutely heart-broken for her. She told me that when she left school that day her teacher told her how excited she was to see it & that she would be able to hear so much better. Her friends we all excited for her, too. She is sad that they won't get to see it now. So I'm going to talk to her teacher & I'm sure that she will let me bring it in & show the kids how it will hook on & hopefully that will make Maddie feel a little better. She started noticing the hearing loss when she was about 5. Before then, I think she just compensated for it until she got old enough to realize she didn't hear out of her left ear. She has noticed much more lately the ways it effects her & she was indescribably happy to be able to hear better. She would tell people about it & her little face would light up with such complete joy. I know, as the mom, that one month will fly by, & that with the number of surgeries that she has had, there are so many things that could have gone wrong & that this is such a minor setback. But to a 7 year old who has been so anxiously waiting, one month is an eternity. She has been through so much & the end is soooooo close, she just can't quite reach it & I think that bothers her. I've been crying on & off all day yesterday & today just thinking about her disappointment. I think that those of us who have watched her through all this feel a let down also. It's been such a long process & from some things that have been expressed to me, I think that everyone was glad to see her finally done. And even though it is only one month, to her, that final result that she has been fighting for has just been pushed farther away. As I've talked with her about it, she just keeps saying that she wants to hear & that she wants to not have to go to the doctor anymore. Yet, she has accepted the fact that she needs to wait & has gone on being a kid, while I want to call up the doctor & argue with him about why she has to wait that long:) So I guess we'll wait ONE MORE MONTH. Oh, Austin said the cutest thing to me earlier. He wanted to know that if we have her hearing aid sitting on the top of our fridge, why we couldn't just put it on her...good question!
Here are some pictures of the post that will hold the processor in place. Sorry, they are a little blurry, but I think it is so cool what they have been able to do. It works by picking up sound vibrations & then sends them in to her auditory nerves through this post. COOL, HUH?
8 comments:
Ohhhh... poor thing! I know it is so hard to see our kids upset. Breaks our hearts. One month will go by quickly and before she knows it, it will all be done! What a trooper. How cool for you to get her class involved. That is such a great idea! Keep us posted. Your all in my prayers!
There was a little girl in my old ward who had the exact same device. It was literally a miracle for her and her family. I know it will be the same for you and Maddie. Hang in there!
I feel like crying with her. Tell her to hang in there, make a countdown for her. That is what we are doing around here, Mackay won't stop asking when it's time to go to Utah, he wants me to pack his suitcase every morning, little does he know I have the same idea.
I agree with Kerryne, it was smart to get her class involved! Thanks for keeping us updated!
My brother Greg's little girl was born deaf. I believe she is 4 years old. She has a cochlear implant & is doing so well with it. When she is wearing it, she hears & speaks so well. You wouldn't even know she is deaf. A cochlear implant is a magnetic computer device in your head behind your ear. It has to be hooked up to a battery pack that sits on her little hip. Greg was telling me one day that kids would be looking at the battery wondering what it was & that their parents would always pull them away. He would pull them back & explain what it was. Once kids know what something is all about, they usually stop staring because they are no longer curious. And little kids are generally pretty accepting about things. It is usually us parents who are more afraid of something that is different. They learn that from watching us. So I talked with her teacher, who completely agreed, about really explaining everything to her class. They just devoured the information & have been great to Maddie. They all think it is really "cool"!
That is so awesome! I think you are totally right that it is usually the parents that worry about what other people "think" so it is so great to get everyone involved and explain to the kids. There is a couple here who have a baby who was born with a lot of problems and he is having to go through so many different surgeries for cleft pallet amongst many other things and of course when we met them Pajha was so concerned about the baby and wanted to know what happened to him. I of course was embarrassed with her "urge" to ask questions because you never know how the parents are going to react to it, but they were so kind and explained to both of my kids what was going on and now when we see them the kids get all excited and love to see the progress that is being made with him!!!
Emily!! It's Erin (Papworth) Singleton! I'm so glad I found your blog! So many people have one now it seems. At first I wasn't sure it was you, then I saw your post about where you had worked and I saw Circus World and was like, yup, that's her! How are you? Your kids are so cute! Where are you living now? You should email me so we can catch up! esingleton@gmail.com So glad I found you! :)
My mom told me she talked to you a bit at church Sunday... I am so jealous that she got to see you and I am so jealous that you got to see her, ha ha! I miss my mom and my dad (well the whole fam damily actually). It is really hard being away from them but I have to admit, the longer we are gone the easier it gets (if only just a little). We haven't lived in Utah for more than 6 months in the last 8 years. Crazy!!!
Thankyou so much for coming. We appreciate all your support.
Tell Maddie that we love her. She is the most amazing little girl, we are very lucky to be a part of her life.
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