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Old 03-26-2010, 04:43 PM   #76
kellyw8863
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Originally Posted by cantwaittoseemickey View Post
Hi! The main thing that I see that could be a problem is that Ty already has swollowing problems and the big side effect is that if he already has it it can make it worse for a while
I don't think that the botox would affect his swallowing if it's going to be given near his bladder. Ali also has dysphagia and her docs have talked about botox into both her pylorus and her sphincter. No one ever suggested that it would affect her swallowing. Their hope when we discussed it was that it would improve her motility so that we didn't have to worry as much about her refluxing and aspirating on that. Did you get your questions answered regarding the MRI?
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Old 03-26-2010, 04:56 PM   #77
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I don't think that the botox would affect his swallowing if it's going to be given near his bladder. Ali also has dysphagia and her docs have talked about botox into both her pylorus and her sphincter. No one ever suggested that it would affect her swallowing. Their hope when we discussed it was that it would improve her motility so that we didn't have to worry as much about her refluxing and aspirating on that. Did you get your questions answered regarding the MRI?
I totally agree with Kelly on this Tonya. Brigitte has had botox to her pylorus and it was exactly for what Kelly said, to help her motility. The botox to her pylorus did help her GI motility so it did cut down on her aspiration and reflux for the time that it was working. I can totally see the idea that using Botox to his Kidneys etc. as the principal is essentially the same. In fact, that makes a great deal of sense, but kidneys and swallowing??? Never heard of the correlation. I'll be interested to hear the explanation on that one!!
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Old 03-27-2010, 10:48 AM   #78
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Quote:
Originally Posted by kellyw8863 View Post
I don't think that the botox would affect his swallowing if it's going to be given near his bladder. Ali also has dysphagia and her docs have talked about botox into both her pylorus and her sphincter. No one ever suggested that it would affect her swallowing. Their hope when we discussed it was that it would improve her motility so that we didn't have to worry as much about her refluxing and aspirating on that. Did you get your questions answered regarding the MRI?
Thank you Kelly. I have heard of some not so great stories with botox and kids with CP and that had me a bit uneasy. I looked at the Botox website and in side effects it mentioned can effect swallowing but it didn't mention which body parts it was given in.

His neurosurgeon was out of town this week so I won't know till next week. I am going to do a reminder email b/c I woudl really like to get all of this done on spring break. Which right now is looking unlikely since it is a week away.Hopefully it will work out.


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I totally agree with Kelly on this Tonya. Brigitte has had botox to her pylorus and it was exactly for what Kelly said, to help her motility. The botox to her pylorus did help her GI motility so it did cut down on her aspiration and reflux for the time that it was working. I can totally see the idea that using Botox to his Kidneys etc. as the principal is essentially the same. In fact, that makes a great deal of sense, but kidneys and swallowing??? Never heard of the correlation. I'll be interested to hear the explanation on that one!!

I read it on the Botox website.I'm now thinking it may have meant if it was used in other places but it didnt clarify where. You are helping me to feel more comfortable with thisI think the with him being the third child at our hospital is what is making me so uneasy.
They had to change his formula again. He is now on Nutren 1.5 and it is 8 cans a dayHe is back on night feeds which is something he just did not want to do. He's also on the pump more during the day.I just dont like backward slides. But this should help with his stomache tolerating things better and cut down on his constipation. Maybe this is THE one. This year is our first year working with a nutritionist with his feeds and they have been so helpful.
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Old 03-29-2010, 11:21 PM   #79
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Just thought I'd share some pics of our movie night

Tonight we decided to rent Panyo as Ty has been really wanting to see it and it did not dissappoint at all! IT was the cutiest movie I have seen in a long time. He Even wants the cd to the music that it has and that has to be very special for him to want that.

Anyways we were going to work on our links and they proved too much for some kiddo's on a Monday so I will work on cutting them out tomarrow and have them ready to be glued together tomarrow

Here are a couple of pics from tonight




Mr. Goofy himself! He loves Goofy!!



Tommorow night we are watching the BLack stallion. That is Sierra's pick. Then we hope to work on the Links countdown chain Its going to be about a 101 day countdown but that is fine. We are so happy Ty has been given this huge wish. To see the kids just so happy is so great. WHat a wonderful thing Make A Wish does.

THANK YOU MAKE A WISH!!!!

Last edited by cantwaittoseemickey; 03-30-2010 at 07:58 AM.
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Old 03-30-2010, 11:11 AM   #80
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Hi Tonya,
Just wanted to say hello, and let you know I'm following along. Sounds like you have a few things coming up health wise, and I hope they all go well!
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Old 03-30-2010, 04:37 PM   #81
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Hi Laura Welcome to Ty's ptr. Thank you for following us Thank you for the well wishes for Ty.


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Hi Tonya,
Just wanted to say hello, and let you know I'm following along. Sounds like you have a few things coming up health wise, and I hope they all go well!
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Old 03-30-2010, 04:52 PM   #82
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It is a georgous sunny day finally and I think there are more to come this week. Next week is spring break I plan on doing a little shopping for the trip and I also need to look for a dress for my cousins wedding in May.I will also find Ty a nice suit and Sierra has a dress already as she loves dresses. We will travel to Tennessee and we are staying one night in a Bed and Breakfast with a mountain view and the other two nights I will book a hotel. I have never stayed in a bed and breakfast before and I am really looking forward to it.

I am seriously thinking about getting some new luggage. I saw this lady at Kohls yesterday with a really cool rolling suitcase. It was pretty light. She said she had another one that she totally stuffed and it was no where near the wieght limit. Only thing is it was very expensive so I think I might look for something comparable. Right now we are borrowing some from my mom and sister. Feeling the luggage sharing love
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Old 04-02-2010, 03:16 PM   #83
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And let the sun shine...

The last few days have been so pretty so outside we go

Workin hard on the wood pile


Perfect place to cozy up for a good book


And this one is of me because I like my hair finally I would love to put it in a french braid do you think its long enough?
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Old 04-02-2010, 03:27 PM   #84
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Yesterday was a shopping day..

Yesterday I went shopping with my sister. ohh we had a good time.

I found Ty his favorite color green shirt


Found myself a few shirts


And me and my sister got a matching outfit for Easter. She bought the same shoes too but brown.


I was so glad to be able to do a little shopping with her. I do believe a few people thought we were a little crazy She had gastric bypass surgery a few years ago and it almost took her life and she is sick 95% of the time. Before that we got out and went shopping constantly but now between her and Ty we rarely have a chance to go. So when we go we have a "good" time lol because Ty is either at school or they are both having a good day. Sierra well she is always having a good day So the kids were in school and she was doing great so off we went.
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Old 04-02-2010, 03:36 PM   #85
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An update Ty's tests

So remember a few weeks ago Ty had his veeg and was to have an mri to check his spine for retether? I fully didnt expect Ty's veeg to show anything this time as he really seemed to be having a good day that day. But I guess it wasn't the case. He had some activity either while he was asleep or when they did the strobe light. I am a little confused though because the report says when they did the strobe light but the nurse said it was while he was asleep So we will find out more when we go in this month. It also explains why we are seeing the slower processing again when he was doing better. The one thing that has me a bit concerned is that his siezures are starting to be generalized more. I really don't want to increase his med but we will see.

He also had his mri yesteray. And the good news is there is NO rether So next week we will be scheduling the botox. I am SOO relieved there is not a retether.
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Old 04-03-2010, 12:18 AM   #86
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Whattya mean your report isn't snazzy????? Seems snazzy enough to me!!!

I think the key is to read and post on alot of other's threads...........that way you make 'friends' and they reciprocate by reading and posting on yours. Problem is......................I'm alittle too busy to be reading and posting on all sorts of people's threads all day

Oh well. We know we're snazzy right

Here's a wave to you

and LOOK! Now you're back on page 1
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Old 04-03-2010, 12:21 AM   #87
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oh yeah and...............

yay on the good MRI results!

I do so like your little outdoor reading nook!

and SURE you could put your hair in a french braid............if you're a talented french braider (sadly, I am not)!
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Old 04-03-2010, 02:16 AM   #88
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I wasn't subscribed?!? Did you start a new one? I'll go back to the beginning and get caught up over the weekend!
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Old 04-03-2010, 07:31 AM   #89
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Whattya mean your report isn't snazzy????? Seems snazzy enough to me!!! lol

I think the key is to read and post on alot of other's threads...........that way you make 'friends' and they reciprocate by reading and posting on yours. Problem is......................I'm alittle too busy to be reading and posting on all sorts of people's threads all day Ty and myself sit and read the dis boards a little each day. Including his. He loves hearing about all of the trips and the trips coming up (wow there are quite a few!)

Oh well. We know we're snazzy right Heck ya!

Here's a wave to you


and LOOK! Now you're back on page 1
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Old 04-03-2010, 07:36 AM   #90
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oh yeah and...............

yay on the good MRI results!

I do so like your little outdoor reading nook!

Thank you. Sierra built it herself with her comfortor and all. That was her way of going outside. I told her she had to go outside and that was her compromise She is always reading a book.

and SURE you could put your hair in a french braid............if you're a talented french braider (sadly, I am not)!
Oh I wish I was! I am definately not that talented. I can do a ponytail and that's my talent for hair lol. Can braid just a little since its been a while for Sierra to let me braid her hair. Im going to have it done that morning but I'm trying to get it long enough. It has a little over a month to grow
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