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Old 06-08-2010, 06:29 PM   #151
cantwaittoseemickey
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Amber thank you for a wonderful TR. I enjoyed reading all about it. Thank you for all of the great information you have shared as well. Please keep in touch with us so we know how your family is doing. Many prayers for Dakota and James and all of your family.
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Old 06-08-2010, 09:01 PM   #152
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I read it all yet but a wanted you to know you had a fellow dis'er here in Soldotna
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Old 06-08-2010, 09:04 PM   #153
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Wow can't type either. I haven't read your whole TR yet, but I was excited to actually see someone from this lil old town.
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Old 06-09-2010, 09:32 PM   #154
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Hi!!

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Originally Posted by kenaiwitch View Post
Wow can't type either. I haven't read your whole TR yet, but I was excited to actually see someone from this lil old town.
Do you have a wish child? I know that WUNS helped other families in our area, and that there was one going to GKTW soon from Kenai. If you're a wish family I'd love to meet and offer some tips I'm so excited to "meet" someone from the peninsula on here!
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James PTR-http://www.disboards.com/showthread.php?t=2397705
TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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Old 06-09-2010, 09:43 PM   #155
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Originally Posted by snowwhitesmom View Post
Oh, Amber! Hang in there! I am sending good thoughts north to alll of you!
I missed chatting with you, and literaly MISSED you while we were there

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Originally Posted by miss_bell View Post
Hi Amber, I'm sending you positive vibes and hope everything will be ok with Dakota & James. xx
Positive vibes...that's exactly what we need.

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Originally Posted by wishin' on a star View Post
Oh my goodness...you have had your share of worries. I will keep you guys in my prayers. Stay tough, sweetie!
I've had my share and a few other peoples share too! The good news is james is doing very well, so it makes it easier to concentrate on Dakota for a moment

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I am so sorry for what you are going through, you are in my prayers.
I will take any and all prayers

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Originally Posted by cantwaittoseemickey View Post
Oh Amber I am so sorry to hear this Dakota and all of you are in our prayers.
I think the prayers are working, b/c Dakota is being great about this, and I'm not really too freaked either

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Originally Posted by noahsketomom View Post
Hi Amber!!

I had been thinking of you for a while now -- mainly because I too want to finish our TR, and I always thought when you finished, that I would be forced too -- .

I'm loving your TR so much! I just got caught up again, thanks again for sharing your experience there, it's been one of my favorites, and I feel like distant cousins

I am so sorry and heartbroken to hear what's going on with Dakota! Like you don't have enough going on! Hang in there! I know how frustrating neurological stuff can be. I agree, everything seems to have clear cut lab work, but you get into Neuro stuff and it's all guesswork...ugh
I will be praying for your family and for WISDOM for the doctors to figure out what is going on and how to fix it. I think they have a pretty good idea, but I love praying for wisdom, since that's really what the docs up here seem to lack

Don't worry about finishing the TR -you have much more important things to worry about- we'll be waiting when you are ready! And I can totally appreciate the post -GKTW blues. What IS it with the GKTW blues? I'm so glad I wasn't the only one. Like Mike said, it's the best vacation ever and you leave knowing you can NEVER do it again!

Prayers and Hugs from your friends in the smallest state to our friends in the largest!!



Best,
Beth
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Amber, I am so sorry to hear about Dakota! Like you don't already have enough to deal with ! They say God never gives you more than you can handle, so I hope that is true for you! I will keep your whole family in my thoughts and prayers!
After sharing with you guys on here I had a huge weight off my shoulders, and now I feel pretty ok with it. I'm just ready for him to get a good night sleep (that isn't in bed with my hubby and I!!!) It's like having a newborn again.

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My thoughts are with you all
SO thankful for all the prayers
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James PTR-http://www.disboards.com/showthread.php?t=2397705
TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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Old 06-09-2010, 09:48 PM   #156
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well we are here now, so any time you need an ear, just let me know!
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Old 06-10-2010, 11:36 PM   #157
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I really liked reading your TR even though you had alot of mishaps you really had a wonderful trip and made the best of everything. You are a real inspiration to others. I am sorry your Son Dakota is having health issues and will keep him and your Family in my Prayers. I am glad to hear that James is doing well right now. I too hope you will come back and let us all know how your family is doing. It seems like we all become Friends on here and wev'e never met. That is one of the special things about this sight. Take care.
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Old 06-11-2010, 11:09 PM   #158
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Update

We went to the Neuro yesterday with Dakota. His EEG and Sleep Study were pretty clear cut, he is having seizures that originate in the frontal lobe, so he apparently has frontal lobe epilepsy. The doc put him on two kinds of meds and all in all it could have been so much worse. The cyst in his brain is pretty small, about the size of a large grape, but it isn't the cause of the seizures, and doc says we just need to monitor it, because these kinds of cysts can grow and then do cause problems.
Doc did say though that we may want to consider having Dakota tested for a mitochondrial disorder. When Dakota was 12 he was hit suddenly with juvenile rheumatoid arthritis that was fairly difficult to get under control. He had periods of relapse/remission but for the last year he has done very well. When we told doc that his muscles hurt more than his joints he became interested. During Dakota's "relapses" his muscles are very painful, tight and weak, but his joints are fine. Also this hit him at the same age James got sick...and if James has a mitochondrial illness, then Dakota may also, just a milder version. Apparently relapse/remission is common in some mito illnesses.
We are suppose to get James' muscle biopsy next month to get the confirmation, and if it comes back positive then we will consider getting Dakota tested. I'm still not sure I even want to do the muscle biopsy, since I've heard it's very painful, and honestly, I'm kinda done with invasive tests on my son! There isn't a cure, treatment or much else we can do, even with a confirmation so it's a little hard to want to do anything painful to him. Well that's our update, it's as good as we could have asked for, and thanks everyone for your prayers
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James PTR-http://www.disboards.com/showthread.php?t=2397705
TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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Old 06-11-2010, 11:25 PM   #159
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Amber,

I'm so sorry to hear about all of the medical issues that are now arising with Dakota. I hope and pray that the meds will work their magic and help him get back on a more even keel. As usual, you seem to have an amazing attitude about all this. You model what I attempt (and so often fail) to do -- not get mired down in a pity party, but just give thanks for the positives and try to figure out what can be done to make the situation the best it can be, given the circumstances.

Your TR is a gift to us all. It reminds us that laughter, joy and love can be found in any situation.

Not sure about vomit though. Vomit does trump everything!
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Old 06-12-2010, 12:22 AM   #160
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Amber,

I'm so sorry to hear about all of the medical issues that are now arising with Dakota. I hope and pray that the meds will work their magic and help him get back on a more even keel. As usual, you seem to have an amazing attitude about all this. You model what I attempt (and so often fail) to do -- not get mired down in a pity party, but just give thanks for the positives and try to figure out what can be done to make the situation the best it can be, given the circumstances.

Your TR is a gift to us all. It reminds us that laughter, joy and love can be found in any situation.

Not sure about vomit though. Vomit does trump everything!
I just had this conversation with my BFF...every time were at the hospital I'll see a child who in MY opinion seems worse off than James. At first it was any kid in a wheelchair, then James ended up in a chair, then anytime I saw a kid with a feeding tube, my heart just sank, THAT"S a sick KID!....then James got a tube and suddenly feeding tubes didn't seem so bad, we definitely got dealt a dozy with James getting sick, but if I'm super honest with myself, it could have been so much worse. GOD gave me what I could handle and gave me the strength to handle it with as much grace as I could muster up. Not to say I didn't have my own pity parties at times, but even with everything that's happened, I can't help but feel so grateful to be the wife of an amazing man and the mom to 6 fabulous kids!
And yes, vomit trumps EVERYTHING!
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TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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Old 06-12-2010, 09:27 AM   #161
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Originally Posted by alaskanabbott View Post
Do you have a wish child? I know that WUNS helped other families in our area, and that there was one going to GKTW soon from Kenai. If you're a wish family I'd love to meet and offer some tips I'm so excited to "meet" someone from the peninsula on here!
No just auntie to one, little Coen was born with a hole in his spine, I'm sure you have run into them.
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Old 06-12-2010, 12:29 PM   #162
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There is an amazing mito specialist in Seattle. There is also a mito board at www.parent-2-parent.com/forum that is incredibly helpful. Is James on the cocktail? If he tested positive for MNGIE, I'm not sure why they would put him through the biopsy. Ali was first tested for the most relevant mtDNA mutations (including MNGIE because of her GI dysfunction) before doing the biopsy in hopes that it could be avoided (unfortunately, it couldn't). Really, if they have already identified the mutation, the biopsy won't offer you any more information. Just thought I'd throw that out there.
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Old 06-12-2010, 04:15 PM   #163
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No just auntie to one, little Coen was born with a hole in his spine, I'm sure you have run into them.
As in Trace's little brother? If so Beth is a dear old friend, and Trace and my son Caelan were very good friends all through elementary school.
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TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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Old 06-12-2010, 08:24 PM   #164
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Hi Amber! Just checking in on you - what have you done for yourself today? Hmmmm?
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Old 06-12-2010, 09:20 PM   #165
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Hi Amber! Just checking in on you - what have you done for yourself today? Hmmmm?
Ugh, you got me!!! I ate a cheese danish, does that count?
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TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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