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Old 03-08-2010, 11:21 AM   #31
cantwaittoseemickey
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It's a georgous day out finally. Definately getting those Disney goosebumps going!
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Old 03-08-2010, 11:31 AM   #32
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Hi Jen! I was going to wait but the excitement won He did perk up tonight and get his energy back.So that was good to see.
Glad the excitement won and that he perked up a little!

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Finally got a pic of the kids up. There will be lots more to come as the weather warms up. It's getting there! Finally getting near the 50's so I have full confidence it is on the upswing
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It's a georgous day out finally. Definately getting those Disney goosebumps going!
Cute kid pics! I am in PA and the weather yesterday and today is amazing!
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Old 03-09-2010, 07:56 AM   #33
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This is only Monday?? lol Ty has started Intervention after school in preperation for the big testing. He has that 2 days a week and he also has therapy 2 days a week at one place and another therapy at another place the opposite place (ot pt and oral motor).

Saturday he got choked while he as at my parents with dh and he said he had a really hard time catching his breath afterwards. Then after he got home he choked again and again he had a hard time getting back to baseline breathing.. Today he has had more "gunky" stuff and I am really hoping this doesnt mean he aspirated. He is acting fine just a lot of clearing so I think he will be ok. It has been a year ago this month he had his last Aspiration Pnemonia.

On a good note he has been so happy tonight. I love to see his smiles. He is having such a hard time at school and it really does take a toll on him. He says he hates school. Actually everytime his ot told him to print a sentence it was the same sentence over and over. "I hate school". He knows he is struggling. The multiplication facts are really hard for him. Then now we add a longer school day for him well he isnt exactly pleased bless his heart. But to see his smiles in the evening just makes me so happy.
This makes me so sad for you guys. What grade is Ty in? This is honestly my biggest fear with Ali. She's just starting to realize that she's different from other kids her age, and she doesn't like it. At all. She's always been my sweet and innocent "baby," and I'm so worried that will all change once she starts school next fall. I'm sorry you guys are dealing with this now.

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Hi Jen! I was going to wait but the excitement won

Ty had his speech/oral motor session today. He went from talking to basically laying on the table. She had never seen him like this. She totally agrees that the lethargy is related to his constipation. She said this is going to hinder his therapy sessions and we cannot move forward with him struggling so much with it. He did perk up tonight and get his energy back.So that was good to see.
We see the same thing with Ali. When her constipation is bad, all bets are off. To look at her, you would think that she's having a mito crash, but within minutes of finally going, she's like a totally different kid. What does Ty take for meds?

I'm glad you're having beautiful weather there. Feel free to send some up north!
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Old 03-09-2010, 10:35 AM   #34
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This makes me so sad for you guys. What grade is Ty in? This is honestly my biggest fear with Ali. She's just starting to realize that she's different from other kids her age, and she doesn't like it. At all. She's always been my sweet and innocent "baby," and I'm so worried that will all change once she starts school next fall. I'm sorry you guys are dealing with this now.


Ty is in 4th grade. He started understanding that he was different last year. And honestly he has no idea what to say when kids ask him questions. We have tried to work with him on it but he rather just not say anything. I wish it was different as he has alot he could teach them. I believe most of it is steming from his swallowing. When he eats or drinks anything by mouth he has to constantly clear his throat and nasal passages and it is rather loud. The kids have told him to stop numerous times as well as some teachers. But for the most part I think we have it worked out for this year until all the new teachers and kids next year. His oral motor therapist is also working on things to say to let them know he has to do this but he just isn't as detailed when talking like that unless it is something he is really interested in

We see the same thing with Ali. When her constipation is bad, all bets are off. To look at her, you would think that she's having a mito crash, but within minutes of finally going, she's like a totally different kid. What does Ty take for meds?

We were orginally thinking this is siezure activity but something made me think it was pain response and it seems to add up more.His pupils get very big and he becomes so lethargic.He becomes very pale.I always think of Mito with Ty. But he had the muscle bx and it came back as nothing to do with mito. It said type I myofibers, rare which I guess didn't mean anything. His blood work has always either came up normal or with something that doesnt make sense so they dismiss it.Cleveland Clinic believes he has something genetic but that there isnt any tests for it yet and it is undiscovered. Sounds like an I don't know to me. It is all very frustrating. Ty does have alot of the Mito symptoms. Ty is on miralax, senna, benefiber and magnesium citrate for his constipation.
I'm glad you're having beautiful weather there. Feel free to send some up north!
Oh I would love to send some up to you! I think it is supposed to get cold again this weekend though
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Old 03-09-2010, 10:38 AM   #35
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Glad the excitement won and that he perked up a little!





Cute kid pics! I am in PA and the weather yesterday and today is amazing!
It is georgous isn't it? I think it is supposed to get cold again this weekend. Hopefully they bump up the temps just a little bit.
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Old 03-12-2010, 08:00 AM   #36
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An update on Ty's Wish trip

I finally made it back to my own ptr. lol

A little update on Ty first. He is doing much better then he was last week. We did take him for an xray on Monday and he was again impacted. So next week he will go to the GI then on Thursday he will go in overnight for a video EEG. Oh how I do not look forward to this as that glue totally sets him off. I dont blame him that is some gross smelling stuff. Then on Friday morning we will be released by 7:15am for a renal ultrasound at 7:45am then to see the urology team at 11:30am so we will have quite a bit of time to spare between the last two apts. Not sure what we will do Dh is going to meet me down there before the urology apt. So anyways I am a ball of nerves with this urology apt. They will have a plan for him before we leave and we will go home and discuss it then give them our decision. Right now I just dont think we have a handle on things with him. Gi or urology wise. So maybe after next week we will.

[COLOR="DarkRed"Now onto the Wish trip Not alot going on just yet as we are really waiting for his urology apt next Friday to see where things stand.Then after that it will be FULL speed ahead on planning for our Magical trip once againThis morning Ty asked me when we can make the countdown chains so that will be planned for next Saturday. But we are going to wait and start them on April 1st because that is still like a 100 days out and well that's quite a long time! lol

Ok now someone named "GOOFY" sent Ty this amazing post card! He loved it!!

The light bothers his eyes of a morning so I just turned the lamp on long enough to snap a pick so he had them closed.
[/COLOR]
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Old 03-12-2010, 10:03 PM   #37
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Oh Tonya, that 100 days is gonna fly don't you worry LOL

Love the px Did you request a fairygodmailer? I did that with my kids...such a cute idea.

Good luck with the upcoming appts. Such a double edged sword those appointments arent' they? Hate them and love them at the same time. Anyway, thinking good thoughts for you all
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Old 03-13-2010, 08:58 AM   #38
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When Ty had the muscle biopsy done, did they send it out for the ETC testing, or did they just run it through pathology? Ali's pathology report was "mostly" normal, too. She had some abnormal aggregates of normal appearing mitochondria, and if we didn't do the ETC testing, it would have been dismissed. But, the ETC was very abnormal. That plus significantly increased alanine pretty much sealed the deal, but then her genetic testing came back with a specific mutation, so we know it's primary. For Ali's constipation, we do bisacodyl and Go-Lytely, though we know we're looking at an ostomy in her relatively near future. We can't keep doing Go-Lytely on a continuous basis because it messes with her electrolytes. We're just trying to put off an ostomy until she can help care for it. Supposedly it has something to do with higher patient satisfaction.
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Old 03-13-2010, 09:53 AM   #39
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Oh Tonya, that 100 days is gonna fly don't you worry LOL

Love the px Did you request a fairygodmailer? I did that with my kids...such a cute idea.

Good luck with the upcoming appts. Such a double edged sword those appointments arent' they? Hate them and love them at the same time. Anyway, thinking good thoughts for you all
Im not exactly sure what a fairygodmailer is but I definately think that fits her.

They are definately a double edged sword. I can't believe how fast last week went.
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Old 03-13-2010, 10:04 AM   #40
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Kelly Im going to find the copy of Ty's biopsy and I will be back to post. I am pretty sure they did the etc.
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Old 03-13-2010, 11:33 AM   #41
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When Ty had the muscle biopsy done, did they send it out for the ETC testing, or did they just run it through pathology? Ali's pathology report was "mostly" normal, too. She had some abnormal aggregates of normal appearing mitochondria, and if we didn't do the ETC testing, it would have been dismissed. But, the ETC was very abnormal. That plus significantly increased alanine pretty much sealed the deal, but then her genetic testing came back with a specific mutation, so we know it's primary. For Ali's constipation, we do bisacodyl and Go-Lytely, though we know we're looking at an ostomy in her relatively near future. We can't keep doing Go-Lytely on a continuous basis because it messes with her electrolytes. We're just trying to put off an ostomy until she can help care for it. Supposedly it has something to do with higher patient satisfaction.
Ty's biopsy says Right calf muscle, open biopsy: Partial atrophy of type I myofibers,rare.The neuro said that was nothing and it was normal.The ETC says everything was in the control range. All of his genetic testing this far has either came out normal or it is non specific.

I completely understand about the go-lytely and electrolytes. The amount of laxitives Ty is on has me a bit concerned. It just seems like his motility is getting slower. Yesterday he was bubbly with energy today he is back to being pale with circles under his eyes. I just don't get it
I think I need to talk to the ped about an order for sick labs.
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Old 03-13-2010, 11:35 AM   #42
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Love seeing that smile! I am glad Goofy sent him a post card! Good luck with the appointments - it sounds like they are going to be tough and may lead to needing to make some tough decisions.
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Old 03-13-2010, 05:00 PM   #43
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Love seeing that smile! I am glad Goofy sent him a post card! Good luck with the appointments - it sounds like they are going to be tough and may lead to needing to make some tough decisions.
Isn't that the greatest smile!Dont see it too often right now but I know soon there will be lots more
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Old 03-15-2010, 09:37 PM   #44
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Some goodies for our Wish Trip:)

I bought some goodies for the kids and myself. Here are some pics

Tyler with his brand new Scooby Doo Towel


Sierra with her brand new Tinker Bell Towel


and Tonya (me) with my new Mickey Mouse Towel


Tomarrow Ty see's the Gi so I will post when we get home. It is going to be a very busy day as I need to take Sierra into our peds walk in hours as she hasnt been doing the greatest either. So we will see what they say. Hopefully have some help with Ty's motility problems that seem to be getting worse.
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Old 03-15-2010, 10:40 PM   #45
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Im so sorry Ty is having a hard time. I hope you can get some answers at his appointment tomorrow.
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