Discussion in 'Parents of Children with Type 1' started by Brensdad, Sep 12, 2007.
That's exactly why we aren't dropping the ADA complaint.
The policy at Seaworld
I did read that as "no exceptions" yet Seaworld now says they will accomodate the diabetic child?
I guess this is why our family has always vacationed at Disney. They have superb customer service. This past summer, my college daughter fell down and skinned her knee at Disneyworld. Within seconds, employees were asking her if she was okay and offering her assistance to the first aid station. She told them she was okay, but they again offered help and a bandaid. For a skinned knee!
YAY Emma's family!! I am glad you stood up for this, and hope Sea World does fire "kid helper." I like the idea of her following you around the park and waiting hand and foot on Emma. Only people who live this 24/7 understand the level of care and vigilance required.
Sharon (mom to Kathy)
pumping with Cozmo since 9/13/06
Please continue to update us with your story. Thank you for taking a stand. I know that is not always easy. I hope your family take them up on the offer for another trip there--you deserve it - your kids deserve it! Thanks again for standing up for not just your rights but for those who follow after you!!!
Right Brensdad. I agree about teenagers and their lack of discernment. Seems though that once you got an adult involved that they would have been more help. I am so sorry your family had to experience this. One look at little Emma's face would have made me melt and rush to accomodate her had I been an employee there.
No kidding! I mean "Kid Helper" must be a cold, heartless "you know what" to look at that sweet child and not want to bend over backwards to help.
We go to Busch Gardens in Florida about 4x a year and we have never ever encountered anything like what happened to Emma's family. Our bags are routinely searched upon arrival and not one word has ever been said about the amout or types of drinks and snacks that we bring into the park - straws and all. And we always have had a more than enjoyable experience there.
Her rheumatology appt is on the 26th at The Children's Hospital in Denver, hopefully it will all go well. Her endo at the BDC says they're fabulous so hopefully they'll know what's going on with her!
Her limping is getting worse in the mornings, she's got dark circles under her eyes, various random symptoms and she's just too tired to be 3! I could go on and on. Unfortunately she's not "just" symptomatic for the kind of JRA that affects joints and can possibly be outgrown, she appears to have the systemic kind that affects everything. I'm really, really hoping that I'm over reacting, (how many times have we all thought that...), and it doesn't seem as bad to the rest of the family as it does to me.
Her pedi has mentioned Lupus, but so far her labs have been fine, (I've heard it can take a long time for them to be positive, especially in children), and when I was asking her pharmacist about her symptoms recently he said the same thing, "I've never heard of it in toddlers before... but it kinda sounds like Lupus".
AAAAAAAAAHHHHHHHHH!!!!!!!!!!!!! It's NOT lupus! It can't be anything that horrible! Besides the primary treatment for systemic JRA and Lupus is prednisone... OMG! Three days on prednisone nearly put her in the hospital last year with insane blood sugars, (on 3-4X her normal TDD) and severe dehydration as a result. We can not do that long term.
Oh, and the preschool is already figuring out that her care is way more involved than they "realized", (not because I didn't warn them), and they're asking me to hire an aid. I haven't even left the school yet!
I knew an insulin dependent, hypo-unaware toddler on a pump/cgms doing all sorts of new physical activities and eating at new times was going to be complicated. I just really hoped I could figure out a way to make it do-able for them... apparently that's just not possible yet!
I'm not mad at them, I just feel so defeated right now and I just want my little girl to be NORMAL!!
So, there's my whining for the day... You can see why calling the lady at Sea World wasn't my top priority this week! I just couldn't deal with it!
OK, whining over... at least for this post!
Wow Amy, I didn't realize everything else you had going on with Emma. Lots of (((HUGS))) and positive thoughts that whatever else is going on with her is not as bad as you may think.
Oh, Amy, I am so sorry you are dealing with all of this! Poor Emma, she must feel awful! I will be anxious to see what the doctors say after your appt on the 26th. Please keep us posted. If you guys need anything while you are in town, don't hesitate to PM me, we are very close by and would be happy to bring you dinner or something.
You are being seen just before the Children's Hospital moves to its new campus right next to the BDC, I think they move sometime in October. Children's is great though, we've had only one negative experience there and it was with emergency care. Their specialized staff is wonderful!
I am sorry about the day care issues! Like you need one more thing to have to deal with right now!
((((HUGS))))) to you guys. You are in our thoughts and prayers. Keep us posted!!!
Oh man, Amy ...as if you guys don't have enough to deal with . I hope Emma feels better soon and no other tests come back positive for ANYTHING else, poor little thing... She is one lucky princess to have such awesome, incredibly smart and caring parents and even grandparents but it just breaks my heart to read about all the issues you are having... If the daycare can't figure it out, keep on looking and don't settle for less (which I know you wont )....keep believing..there has GOT to be a light at the end of this tunnel!!
Hang in there! Sending you lots of prayers and hugs
Only one year of Type 1 here in this house and we know about prednisone!
You go ahead and whine away as much as you like!!! My heart goes out to you!!! Hugs from Ohio. :cwds::cwds:
so sorry to hear all that is going on with poor Emma. Big hugs to you guys!!
Thanks for the update about Sea World. I am glad you stood you ground and didn't drop the complaint with the Department of Justice.
I hope your appointment with the Rheumatologist goes well. I am sorry you have to worry about another possible chronic condition. I don't know much about JRA so I will just say I hope for the best for Emma and I will say a prayer.
Just wanted to add, that I was wondering if Emma had started preschool. Is it possible to work it out so she can attend?
That news just hurts Amy - am so sorry things are rough right now! Not knowing what is happening is the worst.
Cooper has had a host of issues in his young life - he had spinal surgery at 6 mths old, he sees a ped. neurosurgeon, ped. uroligist - adding the endo to the good old list almost did me in! Then Cooper started having tremors, I couldn't even look at him at times - I was sooo scared. I almost didn't even want to bring him in - becuase I didn't want to know what else was wrong! I was angry that poor Cooper had to have "everything" wrong with him, it was and is just not fair!
While Emma is probably going strong being a 3 yr old - you and dad get to handle all the worry!! You two are just amazing parents!
I stayed at Cooper's preschool for the first 2 months. And, then I took over the snacks for the whole class (only 8 kids). I am sure you and the preschool team can find something that works for all. Hang in there! Thinking of you and your family!
So sorry for all you're going through! Amazing how unfair life can be. Why do bad things happen to good people? Why our babies?
This family has been through a lot of rough seas as well. Unfortunately, we are no strangers to prednisone. DH took it for a while after his bone marrow transplant for leukemia in 2002. Thankfully it was temporary, but it was difficult. Please know that we will be praying for Emma and all of you, and that the solution is something simple and treatable!
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