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

[Trentmom]

Pal Mickey becomes the 5th person in the party..........
And I laughed at the condiment cart too..........hysterically in shock!! And man that was mild compared to well I'll get to that later!!
On to MGM 9as soon as we get back from the Drs)




goodvibes

Now you have piqued my curiousity...I can't wait to find out what happens next

 

[LeeLee2U]

We have a lanyard we got from Donna Lynn (apirateslife4evr) and Bill has a tray on his motorized wheelchair that his dad made him. The plan is to have Pal Mickey ride on the tray attached to the lanyard .

Sounds like a great plan!!!!
I saw a comment thanking apirateslife4evr on your TR when I clicked on the link, but then I backed up to where I'm at on it. I'm fixing to read Bills 2nd post on it! I'm hoping to catch up today. It's just hard to just read your posts because their is such good "chatter" on it!!!!

It's bad enough watching my three year old run off. I can't imagine what it would be like to watch your child roll away from you backwards! Sounds like quite the ride.

Here's some more pirates for Braeton!

Tyler asked Braeton if he could share his smilies , "those pirates are cool!!" he said. Of course B was like sure Bubba we can share and then a few seconds later he said "Just don't take more O.k.? Spoken like true brothers!!! As far as the chair goes, God must have given me a VERY strong heart, because I should've had a Gazillion heart attacks by now. I literally feel the breath leaving and my knees get weak and then that Mommy adrenaline we all have kicks in!!!

I can't wait to hear the rest of your trip report. I'll be patiently sitting here waiting for you to type it. <hahaha> or maybe I'll be trying to type my own Pre-Trip report because Oh My we are leaving on my DD's wish trip in 17 days and I don't think I have anything planned yet. Maybe the rest of your TR will help me plan something... you never know.

But again, What a wonderful Trip Report you have started. The pictures are fantastic and the stories are wonderful keep up the GREAT work!!!

Thank YOU!! Be sure to let us know when you start your PTR, and if you don't the PLEASE make sure to let us know about Your TR. You can always just start your Trip report a little early since you are so close to leaving anyway. That's what 5dwarves did, and it was great.

I found your TR through Who'syourMickey's report. This is great so far and the kids are so cute! I'm so glad you got to stay at the Beach Club! Livin' the high life--but you guys really deserve it!!!!!!! I can't wait for an update!

You do know that WYM has an appearance in this later don't ya????
Thank you for subbing and yes we did enjoy being on the "other" side for a week. AAAHHHHHHH!!!

Now you have piqued my curiousity...I can't wait to find out what happens next

Oh Yeah I got Sharky curious!!!

 

[LeeLee2U]

Just a quick update. I know my posts have been a bit sporadic lately ( I did warn you at the beginning of this that would be sporadic!!) and I fear a bit scatterbrained. I would blame it all on the 18 Dr app. B's had this month plus Shannons quick excursion to the hospital for test and Tylers 3 app. which I can't figure out. He is SUPPOSED to be my Healthy child!!! Actually he is doing GREAT now! Anyway i can blame the sporadicness (is that even a word???) but as far as the scatterbrained, well I'm afraid people that know me are reading (Come out you Lurkers!!!) this and well " I cannot tell a lie" I am a teensy tiny bit scatterbrained. Must be the blonde in me!!!
O.k. Tyler is now well and blasting us with "Stranded in the Jungle every evening. His school is having a "50's day program tomorrow and he's a lead singer (they lip sync). Braeton had a Dr app Tues in Houston with his spasticity Dr. His legs are being a bit sporadic with deciding which muscles are going to be tight and which are going to be loose. But it looks like the Botox is working and we are going to try to wait 4 months for a check up!!! In the meantime we are goingto try night splints just on his feet and ankles to see if that helps relieve the tightness until he can get his new braces. She also gave 2 different types of meds to tak to the neuro about. She couldn't believe they had put him straight on Topamax without trying these others first. And she totally agreed I was right in taking him off of it. There is one she recommended that does not have near the side effects, it has more natarual healing sources in it and it has an appetite increaser instead of suppresant. He eats like a horse, but obviously needs to as he is as skinny as a rail. With Topomax he lost 5 lbs w/inthe 1st 2 wks and that was at an extremly low dose they wanted to up it! Plus it was causing other bd side effects. It did help his migraines, but it hurt him worse in other areas, so it's back to the drawing board. Yesterday he had a follow up w/his surgeon ( That man is an artist) and before that we quickly ran to his pediatrician since he wasn't feeling well and we had to go to Houstont to the surgeons. After several test, but not blood test which we will probably do tomorrow all she could say is watch him and lets hope it's viral. He had suffered with his worst headache ever ,31 hours! the day before and that morn. so we were hoping alot of the symptoms were because of the headache. His neoro retired af ew months ago and he has a new one we havn't seen yet. I'm trying to get in now and the old one, who was the chief neoro at Texas ChildrensHospital had a few things he had mentioned trying but they have not run a recent MRI He had had a brain scan a year before we started seeing him so they didn't think that it was anything there causing the headaches, but I'm going to insist on a scan. Call me paranoid, but I just want to rule that out, before we start stuffing diff, meds down him that could make the cause worse!!!!! *O.k. end of soapbox*
Grumpy errr Shannon is well.... hisself. He is hanging in there. He's haveing some problems with dialysis and it's a little tough for him at school on dialysis days, but he's doing pretty good. His advisor helped him get a schedule for next sem that leaves Tues and Thurs free for him. His Dialysis days are T, Th and Sat so this is GREAT!!!! Plus it seems like if B has surgery or a major test it is on a Thurs so this way Shannon can be there at some of this w/out missing school!! We are still waiting for what they decided to do about his dialysis access after the vein mapping last week. He's in Dialysis right now and it is a Doc day, so I should hear something soon.
B's ears are looking great!!!! He has to wear te headband for another month when he sleeps are his ears are in danger of being hit or the earlobes pushed forward, so it is still a challenge to sleep at night!! This would be tough on any kid, but for someone with CP it is really tough. When you stumble or your head droops, you are always in danger of your ears being touched, either by your shoulders or your hands, or while you are walking, someone elses, hands, bodyparts, doorframes etc..... Soo we have lots of storytime where he can sit wither on mylap or beside me so we can leave the band off. His favorite playmate who is 4 is very, very good about being carefull around his ears, so he's been able to leave it off @him if they are insideplaying something fairly safe!!!!
I will post pics of him with his "new ears if ya'll want.
Untill the next installment
TaTa for now!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[5dwarves]

Leah:

I feel for Braeton. I get migraines too...three or four a month. I have at least two headaches a month that are 3 day headaches. I have found an Rx that works for me, but for a 3 day headache, I have to take 3 doses the first day and one the next two days, to function. I am so sorry he is suffering with them. Absolutely do a follow up head CT. There is a lot to be said for peace of mind. Something that helps my meds work better are hot drinks. My favorite is Carmel Apple Cider from Starbucks. You can easily recreate it for Braeton. Hot cider, a squirt of carmel and whipped cream on top. It is warm and sweet and tasty and really helps with the pressure behind my eyes. I hope that you get into the neuro soon. It is such a pain in the neck to wait for months and months to get in to see these specialists. In the mean time, hang in there!....how is the house going btw?

Elisa

 

[Trentmom]

Wow.....You sure got a lot on your plate LeeLee.

That Braeton is such a trooper to have to endure all that he does.

Glad that your DH is managing well with school and his schedule for next semester fell into place.

Take your time with your updates.....Be as sporadic as you like


We will be here whenever you are

 

[mrsksomeday]

LeeLee, was wondering how Braeton is doing? I know on my pre trippie you had said something about him possibly having to go into the hospital? Is everything ok? Just wanted you to know that your family are in Bill and my prayers .

 

[dismom9761]

LeeLee,thanks for letting us know what is happening. I will continue to keep your family in my prayers.

BTW,I would love to see a picture of Braeton with his new ears!

 

[Who'syourMickey]

LeeLee, I am loving your updates. WOW. The story of Braeton's first "ride" at disney being into the condiment cart is hysterical. I pretty much have my mom of the year moment near splash mountain. Don't forget BlackEarEnvy gets Dad of the year though....he....was....there....too. What about Shannon? All he can say is "AHH??" when his son is rolling away? I thought prednisone made you more likely to take a flying leap and dive in for a bold rescue... Tell him I said he must have Jedi reflexes.... Love the pal Mickey, and when we went to the boardwalk it was one of my favorite places. Very scenic. Full of character and charm.

I would love to see Braeton's new ears too. I hope the headaches go away.

 

[PittypatBR]

Oh, LeeLee, I am so glad I found this TR. You are doing a fantastic job, but I don't know how you EVER have time to post. Your life is like a three ring circus some days, isn't it? I'm kind of glad I found it after some of the cliffhangers were answered though!

My DGD6 has migraines also, and it is so tough to deal with that alone, much less all the other issues. I'm so glad you took him off the topomax. DGD lost a year and a half of learning on that - it totally dulled her mind. She is on depakote and a beta blocker now, and doing much better. The triptans really work well for her as rescue meds also. If you don't do well with the new pediatric neurologist consider taking him to Dallas. One of the nation's foremost pediatric migraine specialists is there, and that is DGD's doctor. He is terrific. With migraines there is so much trial and error, and with his other conditions it makes it even tougher to figure out, I'm sure. Bless you all. You are now all on my prayer list.

BTW, Braeton's ears look like my DH's - his mother tried to fix them when he was a baby by taping them to his head! No luck, needless to say! I'm glad the surgery was successful, and I realize he had other medical issues with his. Anyway, thanks for sharing it all with us, and I look forward to keeping up with the TR (and your LIFE!) now that I have found it. PM me if you have any questions about the migraine meds or the doctor.

Greetings to Braeton and Tyler:

 

[MagiKitty]

LeeLee, I linked to your trip report from the Tracy/Bill/Ace TR thread. I'm going to go back and play catch up with your reports...my prayers are with you also! Hope the little guy is doing better.

 

[kindakrazy2]

Thanks for the update Leah. I've been wondering how you guys are all making out. Poor B - if its not one thing its another. Migraines are awful at the best of time but when he has to wear a band aroundhis head it must be a million times worse. What a little trouper though. Seems like such a sweet kid.

Some for Braeton




and some for Tyler

 

[Disneymommom]

...... Yep that's my 2nd Best Mom Award of the day.
And then we order....[/COLOR][/QUOTE]

I'm sorry I fell behind on my trip report reading but I am here and enjoyed your update! You are too funny, the condiment cart run in sounds hilarious!!! I'm glad that Braeton did not get hurt, tht is what counts!

 

[Disneymommom]

Hi BREATON! These are for you buddy!



Hi Tyler, Here's some smileys for you too!!!!

 

[LeeLee2U]

Just thought I'd let ya'll know what was going on. Braeton is much better. He still has alittle ways to go and we're not exactly sure of what his body is trying to fight.
I wll try to have an update this weekend. Sun. a.m. Shannon recieved a phone call during Sunday School. He has to keep his phone with him in case of transplant. Anyway it was his Bro with the shocking news that their Momwho was i the hospital for a colon problem, had crashed in the middle of the night and was in the CICU. We rushed home and packed and headed out to Ms. (She lived in Ok but was visiting my Bro-in-law) While on the way we recieved a call that she had crashed again for the 5th time (we had gotten another similar call) but this time they were not able to revive her. They had been trying to keep her on life support until the family could get there, but her heart would not cooperate. My Father in law and other Bro in law were on the road from Ok and of course we were headed that way also. So it was very rough on them not getting to see her before she passed. Her funeral is in La so we left Ms this a.m. went to La to take care of the arrangements and then had to come back home because Shannons dialysis center could not find another clinic that would let him do dialysis. So it was just don't take dialyis and go to the ER so they would admit him in the hospital and do Dialysis (this was the advice from DHs dialysis clinic ) or come home. Where the funeral is to be held is only 2 1/2 hours away so we came home. We got in @ midnight and poor DH has to be up at 4 to go to Dialysis!! Then we will head back to La.
The funeral is Thurs which is also my Father in laws Birthday I really feel for him. They had been married for almost 43 years and he is so lost without her.
Needless to say things are a little busy right now but I will be back

 

[Eeyore's Mom]

Wow! Please know I am saying a prayer for all of your family tonight. You must be exhausted... I do hope you can get some rest and also that Shannon holds up OK throughout this time. Wish I had more to offer but do know we are thinking about you and praying.

 

[alizesmom]

I am so sorry for your loss. I'll be praying for all of you to find God's peace. Karen

 

[MagiKitty]

Please accept more prayers and condolences for you and your family. You are all in my thoughts.

 

[Momof2wCF]

LeeLee, trying to catch up! Love the image of Braeton enjoying his first WDW ride..into the condiment cart! And our DH wonder why we look so frazzled all of the time!
Hope Grumpy..I mean Shannon feels better soon. Sounds like his schedule is going to be better!
My kids have a terrible time gaining weight too. Unfortunately, their cystic fibrosis means they don't feel hunger so much, so they both have feeding tubes. DS likes to rub it in that HIS nutritionist recommends Double Cheeseburgers for him, and I SHOULDN'T have them. Evil child.
Please post pix of Braeton, we'd love to see them.
Here's some smilies for him and Tyler.

 

[Momof2wCF]

Oh no! I caught up and how awful about DMIL! Please give yourself and Shannon hugs from all of us! We'll be thinking of you and DFIL on Thursday.

 

[5dwarves]

Leah:

I am so sorry to hear about your MIL. We have had a rough week but nothing to compare with what your family is going through. My thoughts are with you all.

~Elisa