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Old 04-13-2009, 11:21 PM   #1
Lisarh
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planning MAW vacation!

hello everyone!

I am very excited to have found this forum! We are in the beginning stages of planning our trip with the MAW foundation for our daughter Kali. She is almost 3yrs old and such a beautiful little girl.

I am off to do a little bit of research on this forum about our trip!

Thank you!

Lisa
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Old 04-14-2009, 12:49 PM   #2
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So excited to read about your family. Please tell us more!!!
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Old 04-14-2009, 01:18 PM   #3
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Tell us more asap! Can't wait to hear about it!
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Old 04-14-2009, 01:38 PM   #4
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Welcome to the DISboards!!

I am excited to hear about your trip!

I will put a link to this pre-trippie on the Wish Trippers Unite thread. Feel free to post and tell us all about your family. I am excited for you guys!
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Old 04-14-2009, 02:42 PM   #5
Lisarh
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Hello!

I am glad to have finally figured this forum out! What a wonderful place, so full of information

I am Lisa (34) my husband Calvin (33). We have 2 children together and I have 2 children from a previous marriage. Jordan (12) Deven (10)- the 2 greatest kids ever! They are my kiddos from marriage #1
Kali ( Wish child! 3 in June) and Emma Claire (11 months). My husband and I have been married a short 4 years and it has been a very rough 4 years.
I had my tubes tied after my 2nd son was born, never thinking I would want more children. Fast forward a few years and I meet Calvin, he had no children of his own and desperately wanted his own children, so I opted to have my tubal reversed. We married in May 2005 and I had my surgery September 2005 and I was pregnant with Kali by October 2005!
Kali was born June 22 2006. a healthy 9lbs 10oz (2 weeks early!!)

When Kali was 4 1/2 months old she had her 1st seizure. It was November 6th 2006. She stopped smiling immediately, lost all head control and continued to have sz's constantly. After I begged the Dr's to do an EEG (2 weeks of begging) they finally gave us the heart breaking news. Kali had infantile spasms. It is the most catastrophic form of epilepsy.
Kali has been on over 21 sz meds, the keto diet & we have seen over 11 neuro dr's and 2 neuro surgeons. Developmentally she is 5 months old. She can sit on her own, but no communication. She cant walk/talk. She has a g-tube and can't eat table foods.
Kali has had 3 status sz's-one lasting 13hrs. She is a fighter though.. she amazes me everyday.
They question if genetics play a role?
Right now, her current diagnosis is intractable epilepsy and dravet.


Kali's website is kalielizabeth . com
I must give meds now! be back soon!!
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Old 04-14-2009, 03:46 PM   #6
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I am so sorry that your daughter has been through so much. She deninatly sounds like a strong little girl. I can't wait to see some pictures.

So tell us a little about your trip. When are you going? Are you staying at GKTW? I can't wait to hear more. I am sure that everyone will have a great time.

My family is going sometime in September (we hope) feel free to click on Liam's Pretrip report in my signature. Feel free to post as many times as you like to get your post number's to 10.
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Old 04-14-2009, 04:08 PM   #7
Lisarh
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to be honest, I am not sure when we are going?? I am still waiting to hear from our MAW volunteers. There was a mix up with the paperwork, but I think it has been settled and everything should be close to being finalized? Or at least I hope.

We are aiming for the week of June 14th, my husband already had time off work, plus Kali cant be in real hot weather (it can cause seizures)

Does anyone know if the GKTW is already filled? We were told that we should be fine, but I dont know?

thanks!

Lisa
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Old 04-14-2009, 09:04 PM   #8
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Hard to say whether it's filled or not. Let's wait and see what your wish organization comes up with. It will already be pretty hot in June, but there's lots of air conditioning.
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Old 04-14-2009, 10:25 PM   #9
Corrine 1973
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You will probably find out about GKTW when you get your confirmation with MaW. I am in the same boat you are in, waiting for them to tell me when we could go. We are hoping for some time in September.

Keep us updated.
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Old 04-15-2009, 03:53 PM   #10
Lisarh
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we got our dates today!

June 17 - 23!! Yippie! So now Im excited!!!!!!!!!!!!
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Old 04-15-2009, 04:03 PM   #11
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HOLA!!! i am so happy for ya'll!!! and in june!! wooo hooo!!

we are leaving on SATURDAY for our MAW trip!! you little girl sounds like such a FIGHTER!!! my son also was diagnosed with infantile spasms but after 4 epi of them they never developed....

i can't wait to hear more about your family and your trip!! take car and GOD BLESS!
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Old 04-15-2009, 04:05 PM   #12
Lisarh
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how is your son now? I will have to read your pre-trip report! Have fun and enjoy every second of it!

Lisa
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Old 04-15-2009, 08:10 PM   #13
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she sounds like a little fighter
I can't wait to hear all about your trip
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Old 04-15-2009, 10:25 PM   #14
Corrine 1973
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Now I am extreamly jealous.

Congrats on the dates, now you can really start planning.
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Old 04-15-2009, 11:03 PM   #15
Lisarh
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I stayed on top of them though! I blame the OCD/ADD in me though!

so.. apparently we do not have to bring any money?? That is what the volunteer told me!

What do I need to do now? What do I plan? HELP !!!

Lisa
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