The Week of YES!

[kenaiwitch]

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.

 

[kellyw8863]

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.

 

[alaskanabbott]

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.

 

[snowwhitesmom]

Hi Amber! Just checking in on you - what have you done for yourself today? Hmmmm?

 

[alaskanabbott]

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?

 

[snowwhitesmom]

Ugh, you got me!!! I ate a cheese danish, does that count?

only if you were reading a good book and sitting in the sun while you ate it - remember the first aid rule!

 

[alaskanabbott]

only if you were reading a good book and sitting in the sun while you ate it - remember the first aid rule!

I sat in sunshine today AND read a good book, and played RISK with my boys (the 10 year old won), and took kids to the park where we painted wooden fish....I think I made up for yesterday

 

[snowwhitesmom]

I sat in sunshine today AND read a good book, and played RISK with my boys (the 10 year old won), and took kids to the park where we painted wooden fish....I think I made up for yesterday

Good girl - you're getting there! Maybe a pedicure soon?

 

[yinyanggirls]

Hey Amber, we're back from the wedding and I'm catching up. They are talking about a muscle biopsy on Phoebe so keep us posted on James and Dakota. Haven't been able to ask the doc my questions yet, so who knows.

 

[alaskanabbott]

Hey Amber, we're back from the wedding and I'm catching up. They are talking about a muscle biopsy on Phoebe so keep us posted on James and Dakota. Haven't been able to ask the doc my questions yet, so who knows.

I will! We see the Neuro next month to discuss the biopsy, so it will be a few weeks. Dakota has been siezure free for three nights!

 

[yinyanggirls]

That's great! I bet he feels better after getting some good sleep too.

 

[alaskanabbott]

Just and Update:
Dakota is doing GREAT! The anti-seizure meds are working perfect, seizure free for two weeks! Dakota was given the amazing honor of being named team captain for the football team this year. He has won two State Championships already with this team, and we're hoping for a third!
James is feeling very well lately, and we are still not sure if we are doing the muscle biopsy, since it won't do much other than confirm the MNGIE which at this point he doctor is diagnosing him with.
DH decided that the memories we made during the trip were worth their weight in gold, so he has invested in more memories for us by way of booking us on a Disney Cruise for next February. We got an amazing deal, and with the World passport we received from GKTW we can enjoy some fun things like Lego land for free!
Thanks everyone who shared our journey, you are part of our family forever

 

[ellenbenny]

Just and Update:
Dakota is doing GREAT! The anti-seizure meds are working perfect, seizure free for two weeks! Dakota was given the amazing honor of being named team captain for the football team this year. He has won two State Championships already with this team, and we're hoping for a third!
James is feeling very well lately, and we are still not sure if we are doing the muscle biopsy, since it won't do much other than confirm the MNGIE which at this point he doctor is diagnosing him with.
DH decided that the memories we made during the trip were worth their weight in gold, so he has invested in more memories for us by way of booking us on a Disney Cruise for next February. We got an amazing deal, and with the World passport we received from GKTW we can enjoy some fun things like Lego land for free!
Thanks everyone who shared our journey, you are part of our family forever

Wow! So glad things are looking up! And how exciting to be planning a Disney Cruise! Not sure if I posted before, but I have been following along on your trip report and you have a beautiful family. I am so happy for you all that things are going well.

 

[snowwhitesmom]

So happy for the wondeful update!

 

[yinyanggirls]

Great news about Dakota! I can see why you are hesitant to do the biopsy on James. We were told to hold off on Phoebe's for now, and I'm grateful.

I gather you are doing a west coast cruise then? I wonder how long they will be doing the kids free thing. I'm so tempted! We are driving to CA in Sept for a cousin's wedding and hoping Tim will get the time off he requested to make it into a mini vacation. We want to hit the San Diego Wild Animal Park, SD Zoo, Legoland, Wild Rivers (water park right near my parents), Six Flags Magic Mountain all with the World Passport, and also Disneyland with our Give a Day promo tix. It would be another crazy trip, reminiscent of the wish trip but we'd have a little more time to spread it out if he gets the days approved. I'll let you know how the kids like the CA parks.

 

[alaskanabbott]

Great news about Dakota! I can see why you are hesitant to do the biopsy on James. We were told to hold off on Phoebe's for now, and I'm grateful.

I gather you are doing a west coast cruise then? I wonder how long they will be doing the kids free thing. I'm so tempted! We are driving to CA in Sept for a cousin's wedding and hoping Tim will get the time off he requested to make it into a mini vacation. We want to hit the San Diego Wild Animal Park, SD Zoo, Legoland, Wild Rivers (water park right near my parents), Six Flags Magic Mountain all with the World Passport, and also Disneyland with our Give a Day promo tix. It would be another crazy trip, reminiscent of the wish trip but we'd have a little more time to spread it out if he gets the days approved. I'll let you know how the kids like the CA parks.

It's so hard to make the decision to never know 100% why your child is sick, but at some point you have to put your foot down and stop letting them become a pin cushion for every doctor to cut, poke, and prod. I'll keep in touch in case it becomes something we decide to do.
Is the SD zoo on the passport? We didn't get to do Animal Kingdom, I think the zoo would be so great! You'll have to tell me how a non-wish trip compares....we are so worried we have been spoiled forever I'd love to take the kids to Disney in CA also, but it would cost another $1000 and honestly, we just can't afford one more thing. The only way we can afford this trip is b/c we have some airline miles from James' many trips to Seattle Children's Hospital, and the kids sail free deal made the cost of the cruise pretty bearable. IF you do decide to try the cruise we are on the Mexican Riviera Cruise Feb 6. Wouldn't it be amazing for us past "wishers" to meet up someday?

 

[cantwaittoseemickey]

Great to hear Dakota is doing well!

Your cruise sounds wonderful. I hope you all have a great time. I am not familiar with the cruises but when we went to WDW in 08 the cm's were very good to us. Comparing Disney with our local amusement park well there is no comparison. Just the way they do things in general. From the lines to the characters its just great. I can't even begin to imagine how it will be on Ty's Wish trip if it is even better.

 

[yinyanggirls]

It's so hard to make the decision to never know 100% why your child is sick, but at some point you have to put your foot down and stop letting them become a pin cushion for every doctor to cut, poke, and prod. I'll keep in touch in case it becomes something we decide to do.
Is the SD zoo on the passport? We didn't get to do Animal Kingdom, I think the zoo would be so great! You'll have to tell me how a non-wish trip compares....we are so worried we have been spoiled forever I'd love to take the kids to Disney in CA also, but it would cost another $1000 and honestly, we just can't afford one more thing. The only way we can afford this trip is b/c we have some airline miles from James' many trips to Seattle Children's Hospital, and the kids sail free deal made the cost of the cruise pretty bearable. IF you do decide to try the cruise we are on the Mexican Riviera Cruise Feb 6. Wouldn't it be amazing for us past "wishers" to meet up someday?

Yep, we missed AK too and that was exactly my motivation for wanting to make sure we get to San Diego while the tix are free. I emailed the contact and she said that we can get tix for the zoo and wild animal park and they can be (and should be) done on separate days. Where are you flying into? Are you sailing from Long Beach or San Diego? If you have time, you might think about the free tix for Six Flags. It's a pretty big amusement park, about an hour from Long Beach.

 

[DMMarla07860]

just found your trip report today, was good reading and I enjoyed it

 

[DMMarla07860]

Just and Update:
Dakota is doing GREAT! The anti-seizure meds are working perfect, seizure free for two weeks! Dakota was given the amazing honor of being named team captain for the football team this year. He has won two State Championships already with this team, and we're hoping for a third!
James is feeling very well lately, and we are still not sure if we are doing the muscle biopsy, since it won't do much other than confirm the MNGIE which at this point he doctor is diagnosing him with.
DH decided that the memories we made during the trip were worth their weight in gold, so he has invested in more memories for us by way of booking us on a Disney Cruise for next February. We got an amazing deal, and with the World passport we received from GKTW we can enjoy some fun things like Lego land for free!
Thanks everyone who shared our journey, you are part of our family forever

Glad to hear your son is doing great.Your husband booked a Disney Cruise for more memories for you all, smart man. I've been 10 times twice as a teen and every year since I was 18 and they just get better and better.