Squirrels, Ducks and Coconut Butts!!! A Wish Trip Report *LATEST UPDATE 05/2011**

[kayrosek]

Great update. Keep them coming. Your Sea World Day sounds alot like our DHS day as far as the rain goes. We spent that whole day pretty wet we stilll had fun but we were cold and wet the whole time.

 

[MaryAz]

Great updates. Way to much rain I say. That food looked yummy! Fun time at pick a pearl. Yay for Tessa liking the big wet ride!!

 

[Haganfam5]

Some one stole your ponchos!! Some people are just so unbelievable! The nerve! I would have been steaming....but I guess there is nothing much you can do about that. I will be extra sure not to leave anything on our stroller this year. Wow, I just can't believe the nerve of some people.

Loving your trip report! You include soooo much detail! You go girl! Nice family pictures in the restaurant and the carousel pictures are wonderful! That ice-cream shop looks like fun and don't you just love Atlantis! My children want to go back on that so bad....I don't think we will be heading back to SeaWorld this time though....maybe next time.

I can't wait for the Disney days!

 

[vamassey1]

Great Sea World update! Your meal looked delicious if I ever make it that way I would love to eat there. It sounds much better than our Coral Reef experience. We did pick a pearl in Japan, but yours sounds so much better.

 

[jgates]

I am still slowly reading thru your report, but wanted to say thank you for all of the detail. My weekend job is at Perkins & they have worked with GKTW for over 15 years. They run the Gingerbread House Restaurant. Our current fundraisers are a fishbowl drop (drop a quarter into the shotglass in the fishbowl & win a cookie) as well as a bookshelf with used books for $1 (which is doing GREAT).

 

[yinyanggirls]

I can't believe it took me three posts to get through our Sea World day. The next day is Magic Kingdom and I'm frightened at how long that will take! Tim has been gone for a week for work, but comes back tomorrow. I was about to say that then I will be able to get some more computer time but probably not. His bday passed with him being gone so we will be having some bday festivities with the girls, and then again with his friends, so who knows how the week will go. I have another appt for Phoebe tomorrow after just doing one today. What was I thinking when I scheduled these? Tessa did really well at her ballet recital and didn't have a trace of stage fright (go figure). My sister and her kids came for the day to be in the audience. I'm still thinking next year we might try soccer for her though.

Phoebe's appt today was with a neurologist. I chose not to find a new one when we moved to AZ 3 1/2 years ago. We had already been to 5 neuros in 2 states before and none of them had any answers or ability to help so why bother? Well, her "seizures" have been increasing in frequency and severity over the last several months and I just really want to know what they are and if there's anything we can do about them. So I gave in and made this appt. The doc seemed nice enough but the doors I have been afraid of opening have been re-opened. I was able to trigger a "seizure" while we were there so that she could see it. She said that it does not look like a seizure but it is obvious that she can't control it, she is conscious but not in control and it does seem associated with her neuro function. She used other words I know nothing about such as Basal Ganglia, Dystonia, and movement disorder. After googling those terms I can see the connection (although I certainly don't understand much of it, there is just enough to sound familiar). I also shared with her my thoughts on a chemical imbalance, such as an adrenaline rush causing other chemicals to be out of balance. She said probably not adrenaline, but dopamine. I was proud of myself for figuring out the gist of the cause even if I don't have the vocabulary to explain it.

She wants to admit for a 48 hr EEG (possibly reducing to 24 if we get the "seizures" on record) and then proceeding to a fully sedated MRI while still admitted to the hospital. It's been 6 years since hr last MRI, and 3 since her last EEG but I just don't have warm fuzzy memories of those. I have to admit I've enjoyed the little break we took from neurology and I'm a little stressed and emotional thinking about scheduling these tests. If I thought it would help her, it would be worth it, but in 8 years every test she's ever had done has shown nothing but normal results. It's laughable just how little medical science has helped her. But I guess it's my job to keep looking for answers for her and keep trying to give her a voice.

For now I will keep calling these moments "seizures" because I don't know what else to call them. Dystonic episodes? Anyway, I'll keep everyone updated of course, and try to move on to a happier place by sharing about our day at Magic Kingdom.

 

[dawnbu40]

Tessa looks adorable in her recital costume! I can't believe she didn't have stage fright

and prayers for you in dealing with the stress of Phoebe's testing and hoping that this time the doctors are able to find some answers

 

[PrincessCaitlin]

Tessa makes an adorable ballerina!

I hope Phoebe's testing goes well and you finally get some answers

 

[p00h4me]

For now I will keep calling these moments "seizures" because I don't know what else to call them. Dystonic episodes?

Take a look at the story of Ben Zeller and MMR vaccine at http://tolerancelost.com/category/mmr/ because what happened to Ben sounds a lot like Phoebe. Hope this will bring some answers to you Melissa.

 

[cantwaittoseemickey]

Tessa is adorable!! I bet she would have alot of fun playing soccer

I am so sorry that you are going back down the neuro road with Pheobe. I understand wanting to know what is going on but not wanting to do the testing. Especially when the results are normal. I hope these are not siezures you are seeing but I pray that you get some answers.

I am looking forward to reading about your day at MK.

 

[kayrosek]

I think I understand how you are feeling about the tests. They started running tests on Jonnie at 28 days old. They were always running tests and 99% of them came back negative but he was still having the same issues. We did EEG's for seizure like episodes and they came back negative as well. I got so sick of having tests run on him and watching him go through all that when we weren't getting answers. I'll be praying you get some answers as well and that this doctor continues to listen and try to come up with answers for Phoebe.

I have really been enjoying your Sea World updates. I can't wait to read about your MK day.

 

[kellyw8863]

Tessa looks beautiful.

I'm sorry about the opening doors. Ali has started with some pretty major facial tics and really odd behaviors, so we're about to return to the neuro road as well. To say I'm not looking forward to it would be an understatement. At any rate, have they ever looked at metabolic stuff for Phoebe? I know when we have children affected by one thing or another, we tend to look at things through colored glasses, but the rule of thumb for mito is three or more systems involved with no other logical explanation. If you haven't gone metabolic and you're interested in lightly pursuing it, there are some basic labs that can be done. If you're interested, shoot me a PM and I'll share some more - I don't want to make assumptions!

Hang in there and indulge yourself in that margarita or a glass of wine. Regardless of how often you do "this," it never seems to get easier (just different).

 

[Wee Annie]

Melissa,

so sorry to hear about the increased neuro issues Phoebe is experiencing. I'm not all that familiar with them, except that I researched tardive diskenesia last year because it was a potential side effect of one of Elke's meds -- is dystonia somewhat like that? I know the feeling about not wanting to do yet more tests, especially if prior ones have not yielded any useful info, but I'm hoping and praying for you that these tests will shed some light on what is going on in Phoebe's brain. Ughh. Hate that this is happening to her. Our children deserve a break. Hang in there. Sending cyber-hugs your way!

PS: Tessa is an adorable ballerina. But we're partial to soccer in this family. It'll open a whole new door, though, to a new set of drs (spent today at the orthopedist with Maggie. She's one of four girls on her team currently suffering from a foot injury. Over-training anyone?????)

PPS: Love the earlier pic at the ice cream palace, but that's actually my oldest -- Kate -- and not Maggie. Thanks for including it, though!

 

[yinyanggirls]

Fantastic Sea World update!
I love how the "low=key" days exhausted us just as much as the busy ones!!
We also did Seaworld first and also ate at Sharks!

My plan to keep it low key totally failed!
We all enjoyed Sharks. It was too bad Phoebe was too tired to enjoy the special table we were given though.

I don't think I have shared it on my TR or PTR so I will tell you on here. My family and I went to Fantasia mini golf and my mom hit her ball into the water. She HAD to climb through a rose bush to get it while my dad is saying "Just leave it there I will go get you a new one and be careful with the camera" (she had the camera in either her sweatshirt pocket or pant pocket) Well, she leans out and grabs the ball and stands up all triumphantly and then plop goes the camera out of her pocket into the pond Luckily we had a rental car because we had to drive to walmart and buy a new camera. After a few weeks the camera dried out and it ended up still working (and we still have it as an extra camera) but it was very funny!

Seems like water was out to get you that day I hope everything dries properly and isn't ruined!

Love the pictures of the penguins! They are my favorite animal

Wow, that is amazing that the camera started working again!

I like penguins so I was disappointed it was such a short little display. I'm still hoping to hear about Amanda and Piper's experience with them.

It sounds like you had a great time in Sea World. Phoebe looks so tired in the one photo, poor girl. So much for a non exhausting day.
That was a great picture of the family and the ones of the girls are absolutely adorable.

Thanks! Everybody loved their dresses and a couple of people asked me if I made them or where I got the fabric, etc. I always told them that we had some really talented friends who wanted to make their trip extra special.

I am loving your trip report!!! Sorry you had sucha WET day at Sea World! I just asked Hayley if she will ride the boat ride with me at Sea World and showed her your pictures, she says she will ride it, hopefully she will. Nathan and my hubby are wimps and won't ride the really fun rides, so hopefully my dare devil Hayley will!

I was hoping to see some pics of Happy Harbor, sorry you did not make it there and then the Candyland game was cancelled! That stinks

I hope your dd sticks to her word! It was fun, if you don't mind getting wet.

I loved reading about your Sea World Day! I'm glad that the girls had a good time! The food at Sharks looks yummy! I'm not sure if we're going to be there long enough to have a meal. But I'm definitely going to keep that place in mind!

I am hoping that the train is working when we go. My son LOVES trains and I know he would be so dissapointed if he doesn't get to ride!

The girls looked too adorable in their pretty dresses too!

I was surprised that several of the restaurants looked and smelled good as we passed. I wasn't expecting that many choices at Sea World.

I think the train was a very temporary blip in the routine. I hope so for your son!

WOW! that was a massively great update!! You guys are having the times of your lives! Keep it coming!

I know, I know, massively looooong. But I'm really writing it for myself so I like to remember all the little things.

I am sorry to see ya’ll had to float/swim around Sea World and sorry to read someone stole your ponchos!

Seriously! Who would do that? They weren't even Sea World souvenirs or anything. After a while, we just figured we were never going to completely dry out.

I'm sorry you got rained on so much! That's what happened to us last year! I'm not going during the Spring anymore after this trip! No way!

I'm glad the weather is cooperating for you this time! I hope it continues!

Fantastic Sea World update! I just adore that picture of Phoebe and the dolphin smiling at each other! Just precious!

I am sorry it rained the whole afternoon at Sea World. That stinks. Dinner looks delicious and what a view of the sharks! I didn't realize how Sea World does their Pick a Pearls -- very cool experience!

I didn't know how they did it either, so I was pleasantly surprised.

Lovin your Seaworld TR! I cannot believe how soaked you were!!!

Yeah, we were starting to get used to it after dinner and no ponchos...

Great update. Keep them coming. Your Sea World Day sounds alot like our DHS day as far as the rain goes. We spent that whole day pretty wet we stilll had fun but we were cold and wet the whole time.

I guess you just have to power through it and enjoy yourself.

Great updates. Way to much rain I say. That food looked yummy! Fun time at pick a pearl. Yay for Tessa liking the big wet ride!!

She loved the scary rides, even though she asked before every single one - is it scary?

Some one stole your ponchos!! Some people are just so unbelievable! The nerve! I would have been steaming....but I guess there is nothing much you can do about that. I will be extra sure not to leave anything on our stroller this year. Wow, I just can't believe the nerve of some people.

Loving your trip report! You include soooo much detail! You go girl! Nice family pictures in the restaurant and the carousel pictures are wonderful! That ice-cream shop looks like fun and don't you just love Atlantis! My children want to go back on that so bad....I don't think we will be heading back to SeaWorld this time though....maybe next time.

I can't wait for the Disney days!

I hope people don't mind my sharing so much. I write so that I will remember it myself.

Great Sea World update! Your meal looked delicious if I ever make it that way I would love to eat there. It sounds much better than our Coral Reef experience. We did pick a pearl in Japan, but yours sounds so much better.

It was really fun to watch the divers. They stay under for a long time!

I am still slowly reading thru your report, but wanted to say thank you for all of the detail. My weekend job is at Perkins & they have worked with GKTW for over 15 years. They run the Gingerbread House Restaurant. Our current fundraisers are a fishbowl drop (drop a quarter into the shotglass in the fishbowl & win a cookie) as well as a bookshelf with used books for $1 (which is doing GREAT).

Thanks for reading! I know it's a lot to get through. Tim and Tessa really loved eating at the Gingerbread House. Phoebe and I usually slept too late. The one time I made it to breakfast they had already closed up the waffle maker, which is the one thing I read everyone here rave about. Figures.

I'm really impressed with the size and magnitude of the donations to GKTW. I also love that the companies do not have their names on everything they donated. Even if it's not allowed, just the fact that they are willing to give says so much about how they do business. Amazing! Thanks for the info on what your restaurant is doing. We don't have Perkins out here and it sounds like they are a HUGE supporter of GKTW. So thanks!!!

 

[All7OfUs]

Ugh! I can so totally relate to your "opening up these issues again" feelings!! We are about to do the same with our son when we move back, for his growth hormone and all the learning issues too. I want and need to know, but SURE don't want to go through that process - again.

 

[yinyanggirls]

Tessa looks adorable in her recital costume! I can't believe she didn't have stage fright

and prayers for you in dealing with the stress of Phoebe's testing and hoping that this time the doctors are able to find some answers

Tessa makes an adorable ballerina!

I hope Phoebe's testing goes well and you finally get some answers

Thanks ladies! When Phoebe had kinder graduation Tessa got up in front of the crowd and gave an impromptu speech. She was 2 so it was hilarious. That girl.

Take a look at the story of Ben Zeller and MMR vaccine at http://tolerancelost.com/category/mmr/ because what happened to Ben sounds a lot like Phoebe. Hope this will bring some answers to you Melissa.

I went to the site but couldn't find Ben's story. Just a photo. It looks like the site is dedicated to children who've been effected by vaccines. I do believe that vaccines can have harmful effects on some kids but it doesn't appear to be involved in Phoebe's difficulties. She has had issues since birth, most of them the same basic issues she has today - tremors they thought were seizures, low muscle tone, being able to sustain a healthy weight when eating... Thank you for sending the link though. I'm always interested in learning more about others' challenges and I think we can certainly learn helpful things from each other.

Tessa is adorable!! I bet she would have alot of fun playing soccer

I am so sorry that you are going back down the neuro road with Pheobe. I understand wanting to know what is going on but not wanting to do the testing. Especially when the results are normal. I hope these are not siezures you are seeing but I pray that you get some answers.

I am looking forward to reading about your day at MK.

Thanks! I think Tessa will love any activity or sport as long as she isn't standing around much.

I think I understand how you are feeling about the tests. They started running tests on Jonnie at 28 days old. They were always running tests and 99% of them came back negative but he was still having the same issues. We did EEG's for seizure like episodes and they came back negative as well. I got so sick of having tests run on him and watching him go through all that when we weren't getting answers. I'll be praying you get some answers as well and that this doctor continues to listen and try to come up with answers for Phoebe.

I have really been enjoying your Sea World updates. I can't wait to read about your MK day.

I have heard so many parents say that the EEGs they've had done didn't show anything, and yet some of them are put on meds by the doc. So why do the tests? It's so frustrating how far science has come and yet it has so far to go!

Tessa looks beautiful.

I'm sorry about the opening doors. Ali has started with some pretty major facial tics and really odd behaviors, so we're about to return to the neuro road as well. To say I'm not looking forward to it would be an understatement. At any rate, have they ever looked at metabolic stuff for Phoebe? I know when we have children affected by one thing or another, we tend to look at things through colored glasses, but the rule of thumb for mito is three or more systems involved with no other logical explanation. If you haven't gone metabolic and you're interested in lightly pursuing it, there are some basic labs that can be done. If you're interested, shoot me a PM and I'll share some more - I don't want to make assumptions!

Hang in there and indulge yourself in that margarita or a glass of wine. Regardless of how often you do "this," it never seems to get easier (just different).

Thanks for mentioning that Kelly. There are so many metabolic conditions, just like genetic conditions and genetic conditions that cause metabolic conditions, it's just crazy. She did have some of the basic tests done at age 2. I need to get a little bit organized and find the paperwork from some of her earlier tests to give the current doctor. Maybe she will want to run some of them again, since it's been so long. I know her geneticist says the technology changes every couple of years, so who knows? I'll keep you posted on what we find out and what I might have questions on down the road.

Melissa,

so sorry to hear about the increased neuro issues Phoebe is experiencing. I'm not all that familiar with them, except that I researched tardive diskenesia last year because it was a potential side effect of one of Elke's meds -- is dystonia somewhat like that? I know the feeling about not wanting to do yet more tests, especially if prior ones have not yielded any useful info, but I'm hoping and praying for you that these tests will shed some light on what is going on in Phoebe's brain. Ughh. Hate that this is happening to her. Our children deserve a break. Hang in there. Sending cyber-hugs your way!

PS: Tessa is an adorable ballerina. But we're partial to soccer in this family. It'll open a whole new door, though, to a new set of drs (spent today at the orthopedist with Maggie. She's one of four girls on her team currently suffering from a foot injury. Over-training anyone?????)

PPS: Love the earlier pic at the ice cream palace, but that's actually my oldest -- Kate -- and not Maggie. Thanks for including it, though!

Haven't heard that term before but I'll have to go look it up now. I have read that dystonia can be chemically induced, so I wouldn't be surprised if the cancer drugs could cause something similar.

Don't scare me away from soccer! I've already ruled out gymnastics! She can't wait her turn for the the coach. I'm really hoping soccer will be a g ood fit. Sorry to hear Maggie had to go to the ortho today.

I'm sorry about the name mix-up! I went back and fixed it! I think maybe I reversed them because my college roommate was Margaret Katherine and we used to tease her and call her Maggie Kate. I remember your girls' names because of hers, so I guess it was bound to happen. Sorry girls! And I found you vampire girls in a photo! When we arrived at the castle I took some pics of the dining room and didn't realize you guys were already there eating (even though you had told me your time). So it's a little distant but I did get you.

Ugh! I can so totally relate to your "opening up these issues again" feelings!! We are about to do the same with our son when we move back, for his growth hormone and all the learning issues too. I want and need to know, but SURE don't want to go through that process - again.

I'm sorry to hear that Liesa! I've really been putting this off, but maybe, just maybe, this time will be different?

 

[yinyanggirls]

After a long "medical" day yesterday, I was woken up at 4:30am by my husband who was sitting in a hospital. He was fine but wanted me to know they were transferring him to another hospital to run a test. I know that he wouldn't want me to disclose the problem here "in public" so I respect that, but it's something that we've been dealing with for ten years, not a huge deal anymore and it was just an annoyance for him to have people at work find out (manly men who need to appear invincible). I had to call on a dear friend to take Tessa for a couple of hours as she has been obsessed with dying since my grandma passed. She knows that daddy "catches bad guys" and has nightmares about "saving the day" so I didn't want to feed into that with images of daddy in the hospital. He was discharged before I even got there but he was exhausted from sitting in a hospital all night, where everyone knows you can't sleep. Even worse, at the first hospital he was stuck in a room with two criminals that his coworkers were babysitting. Are you kidding me??? Put a law enforcement officer in the same room as people his buddies just arrested? That hospital is a death trap. It's actually funny because one time he did fall asleep for a few minutes and then the doctor woke him up to talk to him. His gut reaction was to grab the doc by the lab coat and then cocked his other arm back into a fist. This is how he wakes up from a dead sleep unexpectedly. I told him I was glad he did it to other people besides me. What a day he had!

I got to spend my day coordinating 4 days worth of appts for Phoebe and 2 for Tim on my calendar (working around Tessa's swim lessons, my cousins wedding, etc). At one point, a PA left me a VM guilting me for moving the 24-48 hr appt back a week so I called her, got her VM of course, and told her I had to because I didn't have anyone to take care of my other daughter, unless of course SHE'D like to volunteer! What a day I had!

Tomorrow I'm babysitting at 5, getting Phoebe on the bus at 6, taking Tessa to swim lessons at 11, and then picking up a friend from the airport at 12. Should be a little more relaxing.

 

[All7OfUs]

We can co-miserate together. My day was just about as crappy!

We're in it together, my friend.

 

[blessedmom4]

(((((HUGS))))) for all of the medical stuff! My youngest son is my neuro-nightmare, so I truly feel for you and all of the upcoming tests. I will not tell you any horror stories, I am sure you could write a book on what you have been through. Praying they find answers to help Phoebe!

Tessa is GORGEOUS, her ballet class looked like a bevy of Cinderellas!

I am incredibly sorry to read about your hubby! Juggling the mountain of medical with life in general is no fun. Prayers for a quieter day for you.

Blessings,
Judy

 

[p00h4me]

I went to the site but couldn't find Ben's story. Just a photo.

Here's the direct link to Ben's story:

http://tolerancelost.com/benjamin-zeller-post-3/

I forgot to mention in my previous post that Tessa is a very cute ballerina!

Hope you don't get too worn out with all the upcoming appointments and that the doctors will find out what is causing health problems for both your husband and Phoebe.