Rolling thru the WORLD in a wheelchair on a WISH trip! 8/12 NEW UPDATE*CR CAPTIVES!!

[Goofyluver]

Oh girl...I can't wait to see you pics!!!

Great update lady!

 

[Trentmom]

Hi LeeLee. Hope all is well and hope to hear from ya soon

 

[disneygirlinnj]

whew! I finally caught up again! Still loving all the reports LeeLee and hope everything is going well back home!

 

[smidgen21]

it's been a couple of months, but I'm caught up again too! Looking forward to more updates. I hope you and your family are well.

These are for the boys:

 

[29apr00]

I just read thru your whole TR in a few hours. What an amazing family you have! I've been in tears all afternoon! Such a wonderful spirit you all have.


Can't wait to hear you finish the report!

 

[mnmrmustard]

Hey LeeLee!

My DISing was swallowed up by a busy summer but I'm all caught up now! You've had some big ups and downs the last couple of months - I hope all is well with your hubby and the boys

Great updates with your wonderful vivid style and cool photos. Hope to see another update soon and for Shannon to find a match even sooner! Have a fantastic day

 

[LeeLee2U]

Hi Everyone!! I know its taken me a year and I'm not finished!!
BUUUUUTTTTTT I do have some great news.

Today we finally got wireless internet. Goodbye to slowwwwwww dial up and Hellp high speed. We had to get a new computer a little while back so I have to get all my Dis pics back on here to finish uploading them on photobucket. BUT it shouldn't take as long now my dial up haswent bye bye. Before it would take up to 30 min sometimes to get one pic on there.

Give me a bit to get settled back in as we are recovering from Hurricane ike and hopefully I'll be back on soon.

we didn't have much damage to our place. Nothing that can't be fixed anyway. There are so many worse off. Please Pray for this area. so many still without power and so many without homes now!

Thanks for sticking with me and I hope to have an update VERY soon.

 

[Goofyluver]

Hey Lee! Miss you girl!

 

[Trentmom]

So, glad you did not have a lot of damage

Score on the DSL

 

[mrsksomeday]

YAY!! Lee Lee got high speed internet. I am so happy to see you here. I hope all is well. So sorry to hear that you got Ike damage. We will be here waiting patiently. So nice to "see" you !!!

 

[29apr00]

Glad you all survived Ike with miminal damage.

 

[dancin_princess]

i've just subbed. i'm only up to page 4 but i cant wait to read more. My sister and brother are miracle babies too. My sis was born 4 months early only weighin 1 lb and 8oz and my brother was born 3 months early weighing 2 lbs 12oz. (i myself was born 2 months early weighing 4lb and 11oz) My sister had seizures at the age of 2, but the doctors never knew why. I will enjoy reading ur WISH tr. Your family will be in my prayers.

 

[Chloesue]

Hi LeeLee..I just came across your TR over the weekend and have caught up with the whole report.You have two very special sons.Hope your hubby is doing well and a kidney match can soon be found.
We had a trip to DW back in August with our two special needs grandchildren.Our 7 year old grandson has recently been diagnosed with Asperger's Syndrome and our 3 year old granddaughter has sensory issues.Hubby and I went with our two grandchildren and our daughter.

Special needs children hold a special place in my heart.The five of us had a wonderful time at Disney World.I've been enjoying your TR and look forward to your updates.

Chloesue
(Nancy)

 

[mrsksomeday]

LeeLee, I hope you will give us an update soon as to how everyone is doing. I have missed you .

 

[LeeLee2U]

Hi everyone!! Somehow Our CDs have gotten misplaced with all the Hurrican Hullabaloo!! I will get them. We had doubles SOMEWHERE!!! Which means they are in 1 of the gajillion boxes I haven't unpacked yet.

We are all o.k. We've got a lot going on but I haven't forgotten this i promise. If I don't get pics up in lets say the next 2 weeks I'll just start doing the TR and add the pics later if ya'll want. If not I'll just wait. Really i guess depending on what ya'll want i could do some pictureless updates. Whatever ya'll want!!

Braeton has regressed and has been 85% wheelchair bound for the last 11 days. He was doing better this evening and was actually able to walk a few steps without even his walker!!!
As I think most of you know he has had focal seizures (where they concentrate in one area for him his legs) for a while now. It looks and acts like a muscle spasm so you don't really know for sure what it is until you try to stop it. A muscle spasm we can bend his foot and presshis knee REALLY hard and get it to stop or calm down some. A seizure it's just gonna kick until it's through. At least on him!! anyway he has not had one of these for a while and everything has looked good. Then a few months back Neuro said that they believed that the Migraines he was getting were possibly being caused by siezures which were being portrayed as "Staring Spells" O.k.
So he was set up for a 24 hour monitoring which happens to be on the 16th and 17th of this month. Then about 6 weeks ago the headaches went from 4-5 times a week to Daily and then last Wed he had a sleepinduced Grand Mal seizure in his classroom. He had already been weak and in his wheelchair for 2 days and then that zapped it out of him. The Drs now suspect that he is very possibly having several mini-seizures a day and just can't get over them. The headaches are staying for hours and hours. The symptoms that he has can all be pointed to a couple of different things one of which being a rare but possible tumor which causes the spinal fluid to build up and cause pressure which causes the migraines which then cause the seizures.
We are just praying and trying to let him be as normal for him as possible.

He has not been completly wheelchair bound for sev years.
since he started walking he has always been able to at least use his walker on days he's feeling weak.

On another note we just had parent teacher conferences and both Tyler and Braeton are making Great grades and both are excelled at reading!!! Braeton Tests at a 9 year old level and Tyler who is in third grade is reading at a 6th grade level or above!!!

DH has been chosen to show several of his pictures at an art show they are putting on at his college. He is going for a graphic arts degreee and right now is in a few digital imaging and photography courses. he has made a movie poster, a magazine cover and some pictures using 3 different peoples faces to make 1. Pretty Freaky!!! Still no transplant and his Fistula is not behaving. Dialysis has been really rough the last few times but he is tough and he's hanging i there and not giving up!!!

Kinda like you guys!!

Thanks all. Hope to hear from ya'll soon!!!

 

[LindaBabe]

Thank you for the updates, LeeLee! So sorry to hear that Braeton is back in his chair, and also about dh's fistula acting up. That's just too darn bad! On the other hand, good news at the teacher conference, the internet and about the art show. Hopefully some day, all the news for you will be good! (Am I dreaming?)

My vote goes for finish the trip report and don't stress over the pictures! WORDS! I need WORDS, woman!

Happy Day!

 

[Goofyluver]

Let us know when you know anything honey.

My thoughts are with you.

 

[Chloesue]

LeeLee..prayers are being said for both Braeton and Shannon.So sorry to hear about Braeton's seizures.Congratulations to Shannon for having his art work shown at the college he attends.Hugs to both of your boys for doing so well in school.I can tell that you are such a proud mother!Thank you for the update.I check every day for any news from you
Chloesue
(Nancy)

 

[michellejed]

I have just spent several days reading your TR and post and have to say how much I admire your courage and stamina!!!

My prayers are with you and your family!!

 

[smidgen21]

I hope you had a Happy Thanksgiving.

I bet the boys are getting excited for Christmas.



looking forward to more updates when you can.