jessica52877
DIS Veteran
- Joined
- Feb 26, 2004
Coming along for the ride! Your family is beautiful and I can see what huge hearts you'll have!
Justins Wish trip :) Pre trip report...
- Thread starter loveappletrees
- Start date
I just started reading your thread and when you mentioned about his eyes, I had to respond. I am so glad that you got him in there even though nothing was found in terms of a detached retina...my daughter had a syndrome (she is 10) that puts her at high risk for detachments. This past Decemeber she was seeing things funny and I made an appointment with her ped. ophthalmologist for the next morning. The thing she was seeing went away by morning so I cancelled (she had reported something strange a month before and we went in and the dr. said everything looked fine....I now know we should have gone to a retinal specialist due to her syndrome). Came from from school again seeing funny things...was too late to see the dr. that day so we got an appointment for the morning....her symptoms were not what is typical of detachments so i was thinking an ocular migraine. Findings that morning were macula off detachments in both eyes (the worst, most damaging kind) so she had emergency surgeries. She has lost her peripheral vision and lost functional vision in her right eye. Stay on top of things with the eyes, so glad it wasn't a detachment but don't hesitate to take him back if there are more concerns....I have so many regrets about how I trusted that original dr. who said everything was fine, and that I cancelled the one appointment, and that I didn't take her to the eye emergency room nearby that is one of the best in the country and instead waited until morning. Could have saved more of her sight.
Good luck with you son, he is adorable,
Good luck with you son, he is adorable,
loveappletrees
Mouseketeer
- Joined
- Feb 19, 2012
Jessica & Amsafko Thank you both for your responses! I was beginning to think I was talking to myself 
Amsafko thank you for sharing your story. Your daughter is the same age as my Justin.
It's hard having to trust these Dr.'s sometimes especially when your gut is telling you different. We once had a Emerg. Dr. tell his nurse "well I sent a couple people home today that I probably shouldn't have, ha ha..." The nurse was friends with my bestie who called me and said take him to the city Emerg. instead. Seriously a doctor is joking about the life of a sick child!?
I am sorry to hear you all had to go through. Such a scary ordeal with trying to find out what is wrong & emergency surgery and all. Our kids sure keep us hopping. *sigh*
I think too when we have "good periods" We sometimes forget it can go bad so quickly.
I can't believe he didn't tell me about these spots, they had started at least a week ago, the only reason I knew was I found him hiding under the covers and when I asked why he said "because the spots were freaking (say this loud with a rising pitch) him out!"
At the end of this ordeal the last Dr. told us why J's ped. Dr. thought it was a detatchment, apparently when you get older, older the jelly in your eyes begins to seperate and when it continues to do so it can pull away from the back of the eye and the retina can detach, when you have eye surgery(he's had 3) you are at risk of this happening earlier. I sure wish they had told us that before. Not because we wouldn't have done the surgeries they all had to be done or his brain would have turned off the useless eye, but so we would have been more prepared.
Amsafko thank you for sharing your story. Your daughter is the same age as my Justin.
It's hard having to trust these Dr.'s sometimes especially when your gut is telling you different. We once had a Emerg. Dr. tell his nurse "well I sent a couple people home today that I probably shouldn't have, ha ha..." The nurse was friends with my bestie who called me and said take him to the city Emerg. instead. Seriously a doctor is joking about the life of a sick child!?
I am sorry to hear you all had to go through. Such a scary ordeal with trying to find out what is wrong & emergency surgery and all. Our kids sure keep us hopping. *sigh*
I think too when we have "good periods" We sometimes forget it can go bad so quickly.
I can't believe he didn't tell me about these spots, they had started at least a week ago, the only reason I knew was I found him hiding under the covers and when I asked why he said "because the spots were freaking (say this loud with a rising pitch) him out!"
At the end of this ordeal the last Dr. told us why J's ped. Dr. thought it was a detatchment, apparently when you get older, older the jelly in your eyes begins to seperate and when it continues to do so it can pull away from the back of the eye and the retina can detach, when you have eye surgery(he's had 3) you are at risk of this happening earlier. I sure wish they had told us that before. Not because we wouldn't have done the surgeries they all had to be done or his brain would have turned off the useless eye, but so we would have been more prepared.
jessica52877
DIS Veteran
- Joined
- Feb 26, 2004
I always feel like I am talking to myself when I write a trip report! Usually there are lots of lurkers though.
loveappletrees
Mouseketeer
- Joined
- Feb 19, 2012
BillWendy, We are hoping to be able to take his trip to span over the star wars weekends Star Wars=Justin (and Hayden's major obsession Callie loves star wars too although she's not allowed to watch it till she's older).
Justin was approved in mid-March last year. The tricky part is that we adopted a daughter (Callie) and our wish organizer can't set dates or book anything until we get her passport (which we need finalization papers and new birth certificate for!) The papers are in the courts just waiting.... Once they get here we apply for a new birth certificate (states we are her parents) then we can get her passport once it arrives we give the paperwork to our worker and we get dates.
but...BUT.... we got an unexpected call from his kidney Dr. and so something is going on, blood tests have been taken and now we wait. If he needs another biopsy or *shudder* a transplant things may be put on hold. Also there is this new eye maybe brain thing going on so it's a really unpredictable time for us. Things had been going really good the last couple years, we were lulled into a false sense of normality...
amsafko I'm glad you PM'ed me : )
and for everyone who said my kids were cute thanks and here are a couple more pic's, that'll teach you to complement my pic's!!
Justin was approved in mid-March last year. The tricky part is that we adopted a daughter (Callie) and our wish organizer can't set dates or book anything until we get her passport (which we need finalization papers and new birth certificate for!) The papers are in the courts just waiting.... Once they get here we apply for a new birth certificate (states we are her parents) then we can get her passport once it arrives we give the paperwork to our worker and we get dates.
but...BUT.... we got an unexpected call from his kidney Dr. and so something is going on, blood tests have been taken and now we wait. If he needs another biopsy or *shudder* a transplant things may be put on hold. Also there is this new eye maybe brain thing going on so it's a really unpredictable time for us. Things had been going really good the last couple years, we were lulled into a false sense of normality...
amsafko I'm glad you PM'ed me : )
and for everyone who said my kids were cute thanks and here are a couple more pic's, that'll teach you to complement my pic's!!
loveappletrees
Mouseketeer
- Joined
- Feb 19, 2012
Hide the blackmail photos? GASP!! No way those baby's are hanging on the family gallery wall!
loveappletrees
Mouseketeer
- Joined
- Feb 19, 2012
Here is the promised schedule:
Travel day- We figure we should land by 12:30 or 1. Have a quick stop at Target for a few groceries and be at the hotel by 3pm.
Tell me , should we plan DTD or a character meal for this evening or dive right into the parks?
Day 1- Magic Kingdom for Rope drop. Can anyone tell me if there is somewhere we can get the guest assistance card before we get into the park? Or will we need to make that our first stop?
Day 2-The Wizarding World of Harry Potter for opening with lunch at the 3 broomsticks, Do they have an advance dining registration #? How has everyone found the WWHP? The boys have seen the first couple movies and love the HP lego game.
Day 3-STAR WARS WEEKEND day!! We were hoping to be there for Opening. The boys & C don't care about the celebs but do want to meet and greet the characters and see the parade.
They also want to do the padawan training, but wouldn't that be as good and less busy on a regular DHS day? Or is it extra special during the SW weekends? I have made an ADR for the 50's prime time cafe. If we dont have enough of SWW then we will spend part of the next day here as well. Anyone been?
Day 4- EPCOT Has anyone eaten at the Garden Grill? Is there anywhere else we can eat the veggies grown in E's gardens? Character wise I'd rather do the character dinner with the stepsisters at 1900 park fare.. But the foodie in me says to do the seeds tour then taste Disney grown food. J is excited to see the greenhouses
Opinions?
Day 5- Animal Kingdom day, with Kona Cafe for breakfast first. We were originally going to avoid this park with worries of Js allergies/asthma acting up. But after reading I think that we should be ok if we stay away from the animal zones.. From those who have been there could that make sense?
My Hubbs Justin and I were going to have a "date night" that night at house of blues and maybe some extra park time. H & C will stay with Auntie at the hotel and order in pizza and watch a movie and go to bed at the regular time.
Day 6 Hollywood studios Plan to see the studios without the star wars spin and have lunch at Sci-fi theatre after lunch switch back to the magic kingdom.
Travel day home- I haven't made plans for this day yet as we have no idea about flight times yet.
So this is the tentative work up we are planning on eating early (11) lunches and going back to the hotel for a swim and a nap. Since we have park hoppers we were thinking if we have a productive morning we could switch parks in the afternoons.
Well what do you think answers, opinions, thoughts?
Travel day- We figure we should land by 12:30 or 1. Have a quick stop at Target for a few groceries and be at the hotel by 3pm.
Tell me , should we plan DTD or a character meal for this evening or dive right into the parks?
Day 1- Magic Kingdom for Rope drop. Can anyone tell me if there is somewhere we can get the guest assistance card before we get into the park? Or will we need to make that our first stop?
Day 2-The Wizarding World of Harry Potter for opening with lunch at the 3 broomsticks, Do they have an advance dining registration #? How has everyone found the WWHP? The boys have seen the first couple movies and love the HP lego game.
Day 3-STAR WARS WEEKEND day!! We were hoping to be there for Opening. The boys & C don't care about the celebs but do want to meet and greet the characters and see the parade.
They also want to do the padawan training, but wouldn't that be as good and less busy on a regular DHS day? Or is it extra special during the SW weekends? I have made an ADR for the 50's prime time cafe. If we dont have enough of SWW then we will spend part of the next day here as well. Anyone been?
Day 4- EPCOT Has anyone eaten at the Garden Grill? Is there anywhere else we can eat the veggies grown in E's gardens? Character wise I'd rather do the character dinner with the stepsisters at 1900 park fare.. But the foodie in me says to do the seeds tour then taste Disney grown food. J is excited to see the greenhouses
Opinions?
Day 5- Animal Kingdom day, with Kona Cafe for breakfast first. We were originally going to avoid this park with worries of Js allergies/asthma acting up. But after reading I think that we should be ok if we stay away from the animal zones.. From those who have been there could that make sense?
My Hubbs Justin and I were going to have a "date night" that night at house of blues and maybe some extra park time. H & C will stay with Auntie at the hotel and order in pizza and watch a movie and go to bed at the regular time.
Day 6 Hollywood studios Plan to see the studios without the star wars spin and have lunch at Sci-fi theatre after lunch switch back to the magic kingdom.
Travel day home- I haven't made plans for this day yet as we have no idea about flight times yet.
So this is the tentative work up we are planning on eating early (11) lunches and going back to the hotel for a swim and a nap. Since we have park hoppers we were thinking if we have a productive morning we could switch parks in the afternoons.
Well what do you think answers, opinions, thoughts?
loveappletrees
Mouseketeer
- Joined
- Feb 19, 2012
Hello....Hello out there "Lurkers" come out and say hi and give me some trip tips! #700+ views I'm guessing that there are some of you out there or else I'm incredibly boring and people are running away from my words.....
I prefer to think you are out there...hello?..
where's the smiley for people running away in terror?Hmmm.. there doesn't seem to be one, but look what I did find
Cute!! But really, someone need to get working on the running away in terror smiley K? Cause I may need it again.
"Lurkers" come out and say hi and give me some trip tips! #700+ views I'm guessing that there are some of you out there or else I'm incredibly boring and people are running away from my words.....I prefer to think you are out there...hello?..
where's the smiley for people running away in terror?Hmmm.. there doesn't seem to be one, but look what I did find
Cute!! But really, someone need to get working on the running away in terror smiley K? Cause I may need it again.
imtheluckyone
Earning My Ears
- Joined
- Jan 22, 2012
Another newbie here! I just had to respond for a few reasons:
1. you have a beautiful family!
2. I am an adoptive mom also
3. I am also a mom to a "special" boy. my son also has a rare genetic abnormality. Since he is only 2 we don't yet know what this will mean for us long term.
4. I didn't just want to lurk on your post. Can't wait to hear more about your trip plans!
1. you have a beautiful family!
2. I am an adoptive mom also
3. I am also a mom to a "special" boy. my son also has a rare genetic abnormality. Since he is only 2 we don't yet know what this will mean for us long term.
4. I didn't just want to lurk on your post. Can't wait to hear more about your trip plans!
loveappletrees
Mouseketeer
- Joined
- Feb 19, 2012
Another newbie here!
Hi "I'mtheluckyone"
1. Glad you found me and tanks for popping by to say hello.
2. May I ask what his karyotype is? J is tandem dup11p12p13. and also has your geneticist told you of unique? http://www.rarechromo.org/html/HowCanWeHelp.asp
3. We straight adopted our daughter but are looking at foster adopting one more
4. Are you planning a WDW trip?
imtheluckyone
Earning My Ears
- Joined
- Jan 22, 2012
My son has a duplicate gene on chromosome 5. Since there is not another known case of this particular type of duplication we don't know what this means for the long term. He has developmental delays, physical challenges and ongoing respiratory issues. There's a lot more testing to be done but for now we take things one day at a time.
It's wonderful that your daughter was waiting and eligible to be adopted with out going the foster route. Congratulations on being blessed through adoption! I applied to adopt through the state without fostering. They convinced me there was a need for foster parents to newborns and infants and the chances of adoption is pretty good. And so it's true... I have adopted 2 kiddos through foster care and will adopt my third this year. All three have been with me since birth. I have also fostered two babies that reunified with family. Anyway, very rewarding but what a rollercoaster!
We are headed to Disney World in May! Looking forward to our trip and getting tons of great advice on this site.
When is your trip?
I love animal kingdom but your time there will be limited if you are avoiding the animals. The Nemo musical is excellent and Bug's Life is very funny. You may find you can spend some time at another park on this same day since you will be skipping a lot of things by avoiding the animals.
I am dying to do Universal and experience the Harry Potter stuff. Not this trip though. My kiddos are a little to young to enjoy so we are sticking with just disney this time around.
It's wonderful that your daughter was waiting and eligible to be adopted with out going the foster route. Congratulations on being blessed through adoption! I applied to adopt through the state without fostering. They convinced me there was a need for foster parents to newborns and infants and the chances of adoption is pretty good. And so it's true... I have adopted 2 kiddos through foster care and will adopt my third this year. All three have been with me since birth. I have also fostered two babies that reunified with family. Anyway, very rewarding but what a rollercoaster!
We are headed to Disney World in May! Looking forward to our trip and getting tons of great advice on this site.
When is your trip?
I love animal kingdom but your time there will be limited if you are avoiding the animals. The Nemo musical is excellent and Bug's Life is very funny. You may find you can spend some time at another park on this same day since you will be skipping a lot of things by avoiding the animals.
I am dying to do Universal and experience the Harry Potter stuff. Not this trip though. My kiddos are a little to young to enjoy so we are sticking with just disney this time around.
loveappletrees
Mouseketeer
- Joined
- Feb 19, 2012
imtheluckyone, Did I respond to you by PM or did I just dream that? I only ask because I don't want to have not responded at all but my brain is fried and I think I responded but now I cant remember AAACCCKKK!!!
loveappletrees
Mouseketeer
- Joined
- Feb 19, 2012
The good news: J's blood tests came back and he does not need another biopsy yet!! I swear I almost kissed the clinic office co-ordinator when she told me!
The not so good news: We still don't know what is causing the strange vision problems he is experiencing.But have an appointment with Neuro tomorrow afternoon, I'm guessing this will mean more tests.
The bad news My MacBook pro froze and then crashed. I have taken it in to the genius bar and hopefully they can fix it otherwise everything including the Disney schedule that I have spent a month on will be gone. Thank goodness I can access the dining reservations I made online. I tell you one thing, next time I will be sure to print out a paper copy at least once in awhile!
The not so good news: We still don't know what is causing the strange vision problems he is experiencing.But have an appointment with Neuro tomorrow afternoon, I'm guessing this will mean more tests.
The bad news My MacBook pro froze and then crashed. I have taken it in to the genius bar and hopefully they can fix it otherwise everything including the Disney schedule that I have spent a month on will be gone. Thank goodness I can access the dining reservations I made online. I tell you one thing, next time I will be sure to print out a paper copy at least once in awhile!
imtheluckyone
Earning My Ears
- Joined
- Jan 22, 2012
imtheluckyone, Did I respond to you by PM or did I just dream that? I only ask because I don't want to have not responded at all but my brain is fried and I think I responded but now I cant remember AAACCCKKK!!!
No, I didn't get a PM yet.
but feel free to Anyway, sorry to hear about your computer. That is the worst.
Glad to hear J is avoiding another biopsy for now. Testing is no fun and I know first hand how stressful that can be (alot of worrying and waiting). Hang in there!
loveappletrees
Mouseketeer
- Joined
- Feb 19, 2012
Hi everyone (if anyone is still following that is!)
Sorry I have been gone for the last while it has been crazy here, on top of all that had been going on with Justin my middle son Hayden has gotten some weird rash they were thinking possibly scarlet fever, measles or fifths disease so far scarlet fever has been ruled out but the tests are taking forever to come back for the others! Doesn't H know that he is the healthy kid? *sigh*
Justin had his EEG and the results were unexpected, there were no abnormalities in the back of the brain where the vision stuff comes from but there were some "supernormal" spikes (insert joke about developing superpowers here) these spikes were originating in the front of the brain. So this means we still don't know why he is having the strange visual disturbances and we now have something new to investigate... an MRI will be scheduled in the next 3 months we have been told.
The next bit of news arrived on Callie's 4th birthday.....HER (long awaited)ADOPTION PAPERS!!!!!! What a perfect birthday present! YAY! we rushed out to get her new birth certificate...then waited for it to be mailed out.....then rushed out to order her passport....and waited for it to be mailed......then rushed the info to the rainbow society with all of the completed paperwork...and we got a call day before yesterday.... WE HAVE DATES!!!!!!
Justin's wish trip will be from June 5th to 12th so he is super excited to be able to go to star wars weekends.
So if anyone is still here, thanks for sticking around
and I look forward to sharing plans (and getting opinions!) with you.
-Melissa
Sorry I have been gone for the last while it has been crazy here, on top of all that had been going on with Justin my middle son Hayden has gotten some weird rash they were thinking possibly scarlet fever, measles or fifths disease so far scarlet fever has been ruled out but the tests are taking forever to come back for the others! Doesn't H know that he is the healthy kid? *sigh*
Justin had his EEG and the results were unexpected, there were no abnormalities in the back of the brain where the vision stuff comes from but there were some "supernormal" spikes (insert joke about developing superpowers here) these spikes were originating in the front of the brain. So this means we still don't know why he is having the strange visual disturbances and we now have something new to investigate... an MRI will be scheduled in the next 3 months we have been told.
The next bit of news arrived on Callie's 4th birthday.....HER (long awaited)ADOPTION PAPERS!!!!!! What a perfect birthday present! YAY! we rushed out to get her new birth certificate...then waited for it to be mailed out.....then rushed out to order her passport....and waited for it to be mailed......then rushed the info to the rainbow society with all of the completed paperwork...and we got a call day before yesterday.... WE HAVE DATES!!!!!!
Justin's wish trip will be from June 5th to 12th so he is super excited to be able to go to star wars weekends.
So if anyone is still here, thanks for sticking around
and I look forward to sharing plans (and getting opinions!) with you.
-Melissa
newdrama12
DIS Veteran
- Joined
- Mar 30, 2010
Justin's wish trip will be from June 5th to 12th so he is super excited to be able to go to star wars weekends.
So if anyone is still here, thanks for sticking around
and I look forward to sharing plans (and getting opinions!) with you.
-Melissa
Sweetness! Star Wars Weekends is awesome!!
loveappletrees
Mouseketeer
- Joined
- Feb 19, 2012
Any Tips?
diznymom
DIS Veteran
- Joined
- Oct 8, 2011
I just found your Pre-Trip report.
I am so happy for you that you get to go to WDW. We were there last summer during SWW. DHS was super crazy busy during the weekend. DS13 was not interested in any of the Star Wars programs, so we left and came back another day. So, I'm not much help for that.
I was happy to read that you got all of Callie's paperwork. I know I get so impatient when it comes to waiting on paperwork. I know y'all are super excited to have that hurdle accomplished.
I was also happy to hear that J is doing sort of OK. I will be praying for him and the family.
I'm so sorry that you lost your computer data. Hopefully, you will be able to recreate it.
BTW, I will be lurking quite a bit. Just to keep up with how your trip planning is going. I may not post anything if I don't feel like I have anything helpful to contribute. But, just wanted to let you know that I'll be out there.
I am so happy for you that you get to go to WDW. We were there last summer during SWW. DHS was super crazy busy during the weekend. DS13 was not interested in any of the Star Wars programs, so we left and came back another day.
So, I'm not much help for that.I was happy to read that you got all of Callie's paperwork. I know I get so impatient when it comes to waiting on paperwork. I know y'all are super excited to have that hurdle accomplished.
I was also happy to hear that J is doing sort of OK. I will be praying for him and the family.
I'm so sorry that you lost your computer data. Hopefully, you will be able to recreate it.
BTW, I will be lurking quite a bit. Just to keep up with how your trip planning is going. I may not post anything if I don't feel like I have anything helpful to contribute. But, just wanted to let you know that I'll be out there.
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