Trevor's Star Wars Make A Wish trip

[angel's momma]

Sorry I don't have any advice either. Praying for guidance for you in knowing what to do, Kara's surgery & that she won't have hearing loss, and Trevor's appointment.

 

[kwitcherkicken99]

How did you handle it? It was never an issue when it was only Trevor having surgeries but now that her sister "gets" to have one too she wants in on the action!

Could you pretend to give her one? I was always the one on my family having work done, so I've never seen the other side. I just remember for my first major surgery I wanted to take my teddy bear along. My doctor let him stay with me until I was out. When I woke up, my bear matched me from head to toe, down to every bandaid. It made me feel a lot better.

Or maybe you will find a super cool nurse who could teach her how to take care of her sister?? With their age, it will be extremely difficult to get through to her that surgery is not light task.

All I can offer is and good luck.

Most likely the growth has gone into her ear bones and she will need another surgery to reconstruct her ear so she can hear. But that will be sometime during the summer. Please keep my sweet baby girl in your prayers.

Trevor goes in the following week for his cardiologist appt. We are praying he does not need surgery this year and he can wait a couple more years before getting a pulmonary valve and conduit.

The best of luck to you this week! Many thoughts and healthy prayers headed your way!

 

[Lilfoot93]

Thanks for the prayers everyone!! Christmas shopping for all extended family done... Just my own kids left. Christmas baking done and delivered and some in the freezer of course for later I took Kara shopping this weekend for her brother and sister and of course she has told them hints about the presents she bought... Lets see if she can hold off until Christmas without telling them what she picked out I hate to do it this early but with surgery Friday I wanted to make sure she got her shopping in. Next week we can take Trevor and Allie out shopping for each other.

Now I just have to get some freezer meals made and send out reminders to those picking up my kids for school and taking them home the first few days after surgery. Then Trev's cardiologist appointment next week! We have been so busy it is all creeping up on me!

Now if only they would announce Star Wars Weekend dates then I would have something else to think about besides surgeries and cardiologist visits

Jackie

 

[kwitcherkicken99]

It should be getting close!

 

[Lilfoot93]

I sure hope so! The waiting and anticipation have been SO hard. We know we are going just not when.... I think it is harder on me then the kids! They know it will not be until the end of the school year anyway.

Jackie

 

[Lilfoot93]

Kara's surgery is scheduled for 10am on Friday... I LOVE the time! For all of Trev's heart surgeries he has always been first case and we would have to arrive at the hospital at 6:30 so this will be a nice change. Actual surgery time should be about 2 hours then with the prep and whatever else they do it will be about 3 hours before we get to see her in recovery.

Thanks again everyone for the prayers. We really appreciate them!

Jackie

 

[angel's momma]

Glad you have a surgery time you like. Continued prayers.

 

[reelmom]

Praying for a successful surgery and a quick recovery.

 

[lovethattink]

My thoughts and prayers are with you tomorrow. Hope surgery goes well.

Did you see on the tips thread that someone mentioned that they heard an announcement for SWW dates isn't going out until February?! I sure hope it's sooner.

 

[reelmom]

I've been thinking about Kara all day. I hope everything is going well.

 

[NEmel]

Hope everything went good with Kara and thinking of you all!

 

[Lilfoot93]

Thanks guys! Kara is a rock star and is recovering at home! Her surgery ended up lasting 3 hours as they found several tumor like growths in her ear! Extremely rare. The surgeon has never seen this before. We will not know the extent of the damage until later when she heals and we have a hearing test done. She came home on 5 meds that are all on different time schedules! It will be a long few nights as she needs to be waken during the night. Now that anastetia has worn off she is in a lot of pain even though she has 3 pain meds! She is dizzy and does not walk very straight. That will change in a few days. She has to have another surgery in June to see if they got it all and to see if there is any more damage. The surgeon mentioned something else about the ear bones but i dont remember... I will ask next month when we go for post op. Right now Scott and I are exhausted and trying to get some sleep. 2 am will come quickly for her next meds! Next week is Trev's turn to see if he needs surgery this year... I really hope not. I think the 2 from Kara will be plenty this year!

Jackie

 

[BridgetR3]

Just found your PTR and am enjoying it a lot.

I am glad that Kara's surgery went well and I am sooooo excited for Trevor's MAW trip!!! Hope they release the SWW dates soon!

 

[lovethattink]

Thanks guys! Kara is a rock star and is recovering at home! Her surgery ended up lasting 3 hours as they found several tumor like growths in her ear! Extremely rare. The surgeon has never seen this before. We will not know the extent of the damage until later when she heals and we have a hearing test done. She came home on 5 meds that are all on different time schedules! It will be a long few nights as she needs to be waken during the night. Now that anastetia has worn off she is in a lot of pain even though she has 3 pain meds! She is dizzy and does not walk very straight. That will change in a few days. She has to have another surgery in June to see if they got it all and to see if there is any more damage. The surgeon mentioned something else about the ear bones but i dont remember... I will ask next month when we go for post op. Right now Scott and I are exhausted and trying to get some sleep. 2 am will come quickly for her next meds! Next week is Trev's turn to see if he needs surgery this year... I really hope not. I think the 2 from Kara will be plenty this year!

Jackie

So glad the surgery went well. I'm so sorry she is in pain and that you are up around the clock with the meds. We have one medicine we have to give my son during the night. It's a pain to disturb his sleep and ours, so I can totally relate. Were they able to remove the other growths too? Will they do tests on them to determine exactly what those growths are, or do they already know. I hope her balance returns soon.

I hope Trev's appointment goes well next week.

What did you end up doing about your other child and her wanting surgery?

 

[Lilfoot93]

Just found your PTR and am enjoying it a lot.

I am glad that Kara's surgery went well and I am sooooo excited for Trevor's MAW trip!!! Hope they release the SWW dates soon!

Thanks! I really hope they release dates soon too! Kara is a trooper... I hope she handles her next one just as well! She has an amazing big brother to look up too!

So glad the surgery went well. I'm so sorry she is in pain and that you are up around the clock with the meds. We have one medicine we have to give my son during the night. It's a pain to disturb his sleep and ours, so I can totally relate. Were they able to remove the other growths too? Will they do tests on them to determine exactly what those growths are, or do they already know. I hope her balance returns soon.

I hope Trev's appointment goes well next week.

What did you end up doing about your other child and her wanting surgery?

Thanks! Kara is doing an AMAZING job taking her meds! The ear drops are a little harder but she eventually lets us get them in her ear... As far as the surgeon could tell all growths have been removed. Since there were so many and it is congenital they do not know if all the cells have been removed. So in June she will have another surgery to check if any more growths have developed. He said we are not out of the woods yet we have a long road ahead of us... Not sure exactly what that means but I am sure he will enlighten us more about that at her post op appt! Today I have been thinking about the growths too and thinking if it could be something more. Again, something I won't know until post op...

Allie got to go to a friends house for lunch, dinner, Children's Museum, and snacks at Costco. They also got to see Santa! She was pretty excited about that. After seeing Kara she does not want a surgery anymore... She does however want all the attention Kara is getting. We will work through it. Hopefully the jealousy will not be as bad this summer!

I did see the post about SWW dates possibly not being posted until Feb. I really hope that is not the case!!

Now to get ready for Trev's appt this coming week.

Jackie

 

[BridgetR3]

O.k. so I did a little research for you....here's a little of the SWW dates and when they were announced. When I say announced, it's the first date I can find them on the Disney Parks blog.

SWW 2009 announced on Jan. 29
May 22-24
May 29-31
June 5-7
June 12-14


SWW 2010 announced on Dec. 22
Dates - May 21 – 23
May 28 – 30
June 4 – 6
June 11 – 13

SWW 2011 announced on Feb. 4
May 20 – 22, May 27 – 29, June 3 – 5, and June 10 – 12

SWW 2012 announced on Dec. 8
May 18-20
May 25-27
June 1-3
June 8-10

And then in my research I found this page.....
http://sww.studioscentral.com/main/content/dates

I would say that if you want to plan your trip the weekend of May 30-June 1 should be a safe bet.

DISCLAIMER- what I'm about to say does not affect my family so PLEASE PLEASE PLEASE no flames. I just think people should know. That weekend from May 27 to June 2 is Gay Days in Orlando. I do know that some people avoid this.

 

[Lilfoot93]

O.k. so I did a little research for you....here's a little of the SWW dates and when they were announced. When I say announced, it's the first date I can find them on the Disney Parks blog.

SWW 2009 announced on Jan. 29
May 22-24
May 29-31
June 5-7
June 12-14


SWW 2010 announced on Dec. 22
Dates - May 21 – 23
May 28 – 30
June 4 – 6
June 11 – 13

SWW 2011 announced on Feb. 4
May 20 – 22, May 27 – 29, June 3 – 5, and June 10 – 12

SWW 2012 announced on Dec. 8
May 18-20
May 25-27
June 1-3
June 8-10

And then in my research I found this page.....
http://sww.studioscentral.com/main/content/dates

I would say that if you want to plan your trip the weekend of May 30-June 1 should be a safe bet.

DISCLAIMER- what I'm about to say does not affect my family so PLEASE PLEASE PLEASE no flames. I just think people should know. That weekend from May 27 to June 2 is Gay Days in Orlando. I do know that some people avoid this.

Thanks SO much for the info!! I really hope they release dates sooner rather than later!

Jackie

 

[Lilfoot93]

Kara is healing well. It is amazing how resilient kids are! She loves showing off her surgery ear Good thing she is thinking this is great as she goes back in June for another surgery.

Trevor's cardiology appointment is tomorrow. Now to find some time to finish Christmas shopping and start wrapping! It is amazing how exhausted one gets from cuddling with their kiddo all day!

Jackie

 

[Lilfoot93]

Trev had his cardiology appointment this morning. It went ok. Not the results I was looking for but not terrible. The last couple years his cardiologist was hopeful he could wait until his teenage years to get a pulmonary valve and conduit. As well as start stress tests at age 10. Well, it looks like the stress tests and cardiac MRI will start at age 7... He will be missing a lot of school this year! Of course the two tests can not be done on the same day as one he needs to eat so he can exercise and the other he will need anesthetics as he has to lay completely still for 90 minutes so he can't eat that morning!

Depending on how these tests look determines if he will have open heart surgery this year. His cardiologist is hoping to hold off another year but we will see. Trev goes in the end of Jan for one test and February for the other. We will be frequent travelers to Children's with both Trev and Kara going in this year...

On a good note though Trev is growing well he is about 70% for height! He can still play sports and swim so that is good. Best of all no restrictions for rides while we are at Disney World!

Jackie

 

[lovethattink]

That's good news that he can still play sports and no ride restrictions.

I'm sorry that you are going to become a familiar face at the Children's hospital. I hope all the future tests and surgeries go well.