ANA Discussion Forum
AN Community => AN Community => Topic started by: TaylorsMom on January 23, 2008, 11:00:44 am
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Hi everyone!!!
We have been sooooo busy I haven't had time to get on here lately. We started house hunting in August and after a couple delays finally moved the week of Thanksgiving. We're still in the St Louis area, just about 20 minutes from where we were, and 15 minutes closer to the hospital. I finally got my finished basement. Taylor has lots of room for her stuff. We kept our old house and will be renting it out. I put 10 gallons of paint on walls between Thanksgiving and Christmas, we had new flooring put in and I cleaned everywhere. At least all the holiday goodies didn't go straight to my butt this year, but talk about feeling overwealmed!!! Still have lots of organizing to do at the new house and we've vowed to stop being such pack rats.
To top it off Taylor was supposed to have the muscle graft in her cheek right before we moved. That had to be postponed at the last minute because she developed an abcess in her upper thigh. It started as a bruise and infection got in. She had a 102 fever the day they drained it. The doctor told her "Honey, we can do this here in the office, but it's going to hurt a lot." She said, "No way, you're going to knock me out." They did, and he said later she was smart to have insisted on that as it was deeper and nastier than it looked.
For those of you that don't know, Taylor is 19 and her 4.8 cm tumor was found almost 2 years ago. Surgery left her with right-sided facial paralysis, right-side deafness, drunken-sailor walk, coordination problems (handwriting), and tingling on her entire left side from her neck to her toes. She has since had eye muscle surgery and the first part of the facial reanimation surgery. Last February, they took a nerve out of her lower leg and grafted it in to a nerve in the good side of her face, ran it under her nose, and stopped it in her right cheek. That seems to have taken. You can tap on her cheek on the bad side and she will feel it on the good side. Now comes the second part. They will take a muscle from her upper thigh, graft that into her right cheek and hook the grafted nerve to it. They say it will take around 6 months to start working and will give her a more symetrical smile. Not perfect, but better. She is so self-concious now, we hope this makes the difference and gives her the confidence she needs. The surgery is tommorow, Thursday Jan. 24. We will be there (Children's Hospital-St Louis) until probably next Tuesday. He wants to keep her there a few days just to make sure. You are all such great people here, I know you'll keep us in your thoughts and prayers. I think she is dreading the boredom of the hospital more than the surgery itself. Her tumor surgery was a 5 week stay. She had to learn to walk again.
One more bit of news. After 1 year, 2 denials, and 1 lawyer, she was finally appoved for SSI. She started getting checks in November. A whopping $424.67 a month. Better than nothing but she wants more. If she lived on her own or with roommates she would get $637.00. Can anyone live on that? I know she couldn't. She is planning to go back to college in the fall and figure out what she wants and can do.
That's all for now. I'll let you know how she's doing as soon as I can.
Kathy
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Kathy,
Best of luck with Taylor's surgery tomorrow and congrats on moving!
Eve
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Kathy,
Tell Taylor we are thinking about her and hoping for a quick and not too boring stay in the hospital. Sounds like she's been through a lot.
Lori
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Kathy~
I will definitely be lifting her up in prayer!! It is a lot to go through when you are young, but so much better recovery rate than when you are older. I know (trust me, I know) it is so hard to look at it that way now, but coming from the other side (12 yrs. out) you can see it.
Good luck!
K
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Hi Kathy and Taylor!
A hearty AAAAAAAAAAARRRRRRRR to the both of ya!!!! Will have me pirate sox on for young Taylor for her surgery and will be sending out good vibes, prayers, and positive thoughts as well. It was so great to meet up with you all in Philly.
Big hugs and major forehead kisses to you both!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Hi Kathy let Taylor know that I wish her well and give her kisses to her forehead. :-*
I was reading your previous posts and was wondering if Taylor still needs someone to talk to? My son was 16 when he had surgery and has all the same issues as your daughter other than hearing loss. He is also 19 and on SSI he spent 5 weeks in rehab learning to walk, sit up, swallow to name a few. It sounds like they would be great support for each other. Send me a PM if Taylor is interested and then I will talk to my son. We have been trying for 3 years to find someone his own age that has been through the same experience as him. I am so thankful that you posted today. 16
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I'll be thinking of Taylor and your family also, and I hope she can get through another session in the hospital. Books? Games? Ipod? laptop? TV? I'm sure it will be over sooner than she thinks it will be. Hang in there Taylor!!
Sue in Vancouver
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Go Taylor!
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Hey Kathy, what a time you all have had! Is it already 2 yrs since Taylor's initial surgery? :o wow!
Well, I see the forehead kisses are all covered but you all know me and my huggles... so, to Taylor.... to you, Kathy... to you all....
HUGGLESSSSSSSSSSSSSSSSSSSS!!!!!!!!!!!!!
You can do it Taylor! Hang tough and let's rawk! ;)
xooxox
Phyl, CB and Beanie, the healing "toot" Queenie
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Hugs to Taylor and lots of wet slobbery doggie kisses to help her feel better after her surgery tomorrow! It was great meeting you two in Philly last July, you are both wonderful people! Feel better soon Taylor!
~Karen
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Hi there Kathy: Good to hear from you. Boy you guys have certainly been busy. Please give Taylor my best & will be thinking of her & sending out
positive thoughts for tomorrow's surgery. She certainly deserves a happy future, as do you.
I'm so glad to hear the nerve graft took, now the muscle part... will keep her in my prayers.
Always good thoughts, Nancy
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Here's hoping that Taylor's surgery goes well tomorrow and she's on the fast track to a speedy recovery.
I'll keep her in my prayers.
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GO TAYLOR!!!!!!!!!!!
Wow, hard to believe it's been almost 2 years. Thoughts and prayers out to you. All us "older folks" :o) will be thinking of you tomorrow Taylor. You too mom, sitting in the waiting room is probably harder than it is for us patients
Patti Ut
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Hi Kathy and Taylor,
I'll be thinking of you and sending out good thoughts and special prayers for you all. I'll let Chelsea know what's going on in case she doesn't know. Think positive thoughts and know this is going to put a big smile on your face when you recover. Congrats on the new house.
With all my best.....Michelle
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Taylor,
All sporting functions are stopping, Pubs are closing, companies have announced a day off and I have told the Australian papers to "hold the front page". message to read -
We are all thinking of you Taylor, lots a luv from down under.
Laz
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Taylor,
I certainly can't top what Laz is doing, he is way too cool anyway! I have my pirate sox on and my prayers are heading your way.
Hugs,
Brenda
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Hi all,
Thanks to everybody. Her surgery was 8 hours long. The doctor is happy with the way it went. No problems or complications. IV's all came out this morning and they took her off the morphine that she hates. Still has a catheter and drains behind her ear and in her leg. They will probably come out tomorrow and then she can get out of bed. She's not a happy camper today to say the least, but she's on the road to recovery.
Thanks again to you all!!!!
Kathy
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SO glad it's over and the healing can begin (continue). I'm praying for Taylor that this surgery will make significant improvements in her quality of life after AN.
All My best to Taylor
patti Ut
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Kathy,
This surgery sounds like it is very involved! I hope Taylor will see results soon as well as recovers quickly from this one. I understands why she hates morphine - I do, too. In fact, I hate it so much that I requested no morphine after my second surgery. Fortunately, I did not need it because, amazingly, I was pain-free.
Eve
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So glad to hear that Taylor's surgery went well.
Thanks so much for the update.
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Kathy I am glad to hear that Taylor is doing as well as can be expected. How are you doing? I know how tough it can be on us Mothers and if you need someone to talk to let me know and I will be there anytime you need me. Take care of yourself as well as your lovely daughter. Kisses to both of your foreheads. :-* :-* 16
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Hi all,
Taylor continues to do well. In my last post I said they stopped IV's. They only stopped IV saline. She still gets antibiotics through the IV. They took the drain behind her ear out yesterday but the drain in her leg stays until tomorrow. Her anxiety was bad Friday night and she didn't sleep much. She got a sleeping pill last night and that did the trick. She got off the narcotics Saturday afternoon and is OK on just Tylenol now. She survived on broth and jello untill last night. Now she can eat soft food like mac and cheese. She has a couple stitches inside her mouth so she has to be careful with those. All other incisions are around the conture of her ear, just like on the other side where they put the nerve in. Swelling has continued to increase which is normal. Doc says it will start to SLOWLY decrease after today. If you have seen pics of face lift patients, thats pretty much what she looks like. Very puffy, fat lip, swollen around her eye to the point she can hardly see out of it. I don't see much bruising yet but it's coming. She'll have a big shiner in a few days. Her Dad and Brother are playing Monopoly with her now and I'm at home to get a few things then I'll head back over. Still looks like she'll be home on Tuesday.
Thanks everyone,
Kathy
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Hi Kathy: Glad to hear all is on a good healing path for Taylor. I know that 'swollen' face look - I had it with my surgery 2 months ago.
Will keep positive thoughts for Taylor, you & family. Take care, Nancy
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Hi Kathy,
Our family sends its thoughts and prayers your way. Chris is away at college but I'll let him know. I'm glad she is doing better. Sometimes these surgeries take a while before you see any results. Also, I know how difficult these times are for you as a mother. Tell Taylor we're thinking of her. Chris has another surgery scheduled for Friday. I hope and pray that these kids don't have to go thru any more problems and surgeries. I want them all to get better now !
Rita