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Old 01-16-2010, 01:27 PM   #1
Maryrn11168
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Brian's Wish for Magic!! MAW cruise 3/27-4/3/10

Well I will take a few minutes to at least start my trip report!!

Let me first introduce the cast members!!

Me (Mary) A fulltime Wife, mother, and housekeeper!! A partime L&D nurse!

DH (Bob) A wonderful husband and devoted Dad

DS (Bobby-11) Oldest child. Does not really care for the responsibilies sometimes, but is compassionate and truly feels for his brother when he is not feeling his best. Loves video games and pizza!!

DD ( Catherine-8) She is a piece of work!! Funny, outgoing, loves to sing and dance, and will probably follow in my footsteps into the nursing field!! She is always right there when the nurse comes to do things for Brian! She asks questions and the sight of blood does not bother her one bit!!

DS (Brian-6) Our MAW child. Brian has Cystic Fibrosis. for those of you who do not know what this is..It is a genetic disorder that effects the mucous membanes of the body, basically the lungs and the digestive system. He has been on medications since he was 3 weeks old!! I was lucky to have had him diagnosed while in utero (I was 21 weeks pregnant when I got the news! Like 9-11 it is a day that I can remember everything that happened, where I was, and who I was with!!) Brian is the light of my life, the apple of my eye and the thorn in my side!! LOL!! This has nothing to do with his illness!!! He is a very active 6 yo boy! He is as smart as a whip and picks up everything! He holds the record in school for the most number of times a kindergartener was sent to the principal's office!! It is a good thing she loves him or I would be looking for another school!!

Well that is the cast!! I will get into more details later but I just noticed the time and I have to get ready to go out!!

I hope you enjoy reading this!! I have enjoyed the ones that I have read!! Laughing and crying...sometimes at the same time!!!

Mary
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Honeymoon-Swan 1997,AKL 5/02, Off site 11/02, Hilton Head 8/03, OKW 11/03, Hilton Head 8/04, BCV 5/05, Boardwalk 5/06, Vero Beach 8/07, VWL 5/2008, Magic Western 10/08, BWV 11/08, HHI 8/09, Magic Eastern 3/10, SSR 10/10, Vero Beach 8/11, Dream 5-night 8/11, BLT 8/11, Disney 1/2 Marathon 1/12, 5/12 SSR, 6/12 Magic Weekend Getaway, 7/12 BCV, 9/13 DVC Member Cruise, 10/13 BCV, 2nd 1/2 Marathon BCV 1/14

Last edited by Maryrn11168; 03-12-2010 at 05:19 PM. Reason: change title
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Old 01-16-2010, 11:27 PM   #2
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Great start. Keep it coming.
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Old 01-16-2010, 11:49 PM   #3
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Old 02-18-2010, 08:15 AM   #4
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Wow, it has been over a month since I started this!! Well, I'm back!

Brian is so excited about his upcoming trip!! Let me tell you a little more about him...Brian spent quite a bit of his first 18 mos in the hospital. He seemed to get everything that his brother and sister would bring home!! He also got the flu after the vaccine and RSV after 7 doses of synergis (to prevent RSV)! He had his 1st set of ear tubes at 10mos, 2 more sets have followed and I just learned that they are out again!!

At 18 mos he had a mediport placed...this did not cut down on his infections, just his hospital stays, because now they could access him and we could do everything for him at home. As he has gotten older, and since he started swimming lessons, his number of respitory infections has decreased a bit. October and May still remain his worst times.

Brian loves Disney!! We purchased the DVC when my daughter was 9 mos old and Brian was not even a thought in our heads and I am so glad we did!! Since we already owned DVC, this has allowed us to vacation to WDW, Vero Beach, or HHI at least once a year, and I thinked it helped me to not be afraid to take him on vacation...I'm not sure if that makes any sense. Brian's first trip to Disney was at 7 mos old!

Since he has been to WDW so many times and he will be back, but he wanted to do something Disney related, he chose the Disney Cruise for his wish!! I'm jumping ahead to the wish......getting to this point......

May, as I stated earlier, is not a good time of year for Brian. We spent a few hours in the ED a week before his sister Communion (having to leave a friend's Communion party). After a few weeks of IV antibiotics, steroids and round the clock nebulizers he was as good as new!! His mediport was still going after 5 years!! Every month his nurse would come for port flushes and we would pray it was still good. I was told it would probably last 18 mos or so, and with his growing may need to be pulled, but we would keep it as long as possible. In September, actually Labor day weekend, his port was flushed on Friday afternoon, we went to town pool for the end of the season party, and by 8pm Brian was asking to go home...I knew something was not right since Brian never wants to go home!!!!

I'm going to sign off here because my battery on my laptop is going to die and I don't want to lose all that I just wrote!!!
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Mary-me DH- Woody, DS Bobby(15), DD Catherine (12) , DS Brian (11):

Honeymoon-Swan 1997,AKL 5/02, Off site 11/02, Hilton Head 8/03, OKW 11/03, Hilton Head 8/04, BCV 5/05, Boardwalk 5/06, Vero Beach 8/07, VWL 5/2008, Magic Western 10/08, BWV 11/08, HHI 8/09, Magic Eastern 3/10, SSR 10/10, Vero Beach 8/11, Dream 5-night 8/11, BLT 8/11, Disney 1/2 Marathon 1/12, 5/12 SSR, 6/12 Magic Weekend Getaway, 7/12 BCV, 9/13 DVC Member Cruise, 10/13 BCV, 2nd 1/2 Marathon BCV 1/14
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Old 02-18-2010, 10:35 AM   #5
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Looking forward to hearing more!
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Old 02-18-2010, 11:14 AM   #6
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another Wish trip! Im so happy Brian is getting his wish and a cruise sounds wonderful! Cant wait to follow along
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Gavin's wish trip http://www.disboards.com/showthread.php?t=2325898
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Old 02-18-2010, 12:31 PM   #7
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Ok the computer is plugged in!!

ANyway, back to labor day weekend......We got home from the pool party and I took Brian's temperature....103.8 under his arm!!! Not good. Gave him Motrin and he fell asleep. 8am on the dot I am on the phone with the pediatrician's office and bring him right over to be seen. Tell the Dr. the whole story, just had the port flushed, etc....They test Brian for everything they can...strep, flu (both neg) ears are clear, lungs are clear. No obvious sign of infection anywhere.. he consults with the CF doctor and it's off to the ER for us. At the ER his port is accessed, cultures drawn and sent, antibiotics started, and eventually we get sent home.

Sunday around noon the phone rings and it's the CF doc with the news that the port is indeed infected, growing a fungus...yuck!!! He needs to be admitted for medications, etc. The admission was fast, right to room since they knew he was on his way. The medication they had to give him was nasty, they had to pre-medicate him with benedryl and tylenol to prevent a reaction!! Later that evening, the resident comes in and says they have to start an IV because he needs to get potassium and it can not go thru the port b/c of the antifungal medication is not compatable with it. SO the resident tries, no luck..then they get a nurse from the transport team, no luck after a few sticks. I happen to work at this hospital and I called my unit to find out what anesthesiologist was on....They can get an IV in anyone...It happened to be one that specializes in pediatrics...so he comes over....no luck. Between the cultures and the IV attempts we are now total 12 needle sticks in a 6 year old that recieved benedryl!!! All he wants to do is sleep!!!!

We decide that enough is enough and we will watch his potassium level and see..it was not very low, but the medication can make it lower. I text the CF doctor to update her to what was happening (she and I had been texting each other all night) and she asked why he couldn't take it by mouth, since he is able to swallow pills!!! are you kidding me!!!! so that is how we solved that one!!! I felt so bad for Brian that when my husband came to visit the next day, I left and went directly to Best Buy and bought him the PSP he wanted!!! Nothing gets you a gift faster than 12 needle sticks!!! He was so good....I would never have been able to tolerate it!!! I'm sure there was so much other stuff that he endures that day that I am forgetting about...chest x-rays and stuff. Well that was Sunday...
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Mary-me DH- Woody, DS Bobby(15), DD Catherine (12) , DS Brian (11):

Honeymoon-Swan 1997,AKL 5/02, Off site 11/02, Hilton Head 8/03, OKW 11/03, Hilton Head 8/04, BCV 5/05, Boardwalk 5/06, Vero Beach 8/07, VWL 5/2008, Magic Western 10/08, BWV 11/08, HHI 8/09, Magic Eastern 3/10, SSR 10/10, Vero Beach 8/11, Dream 5-night 8/11, BLT 8/11, Disney 1/2 Marathon 1/12, 5/12 SSR, 6/12 Magic Weekend Getaway, 7/12 BCV, 9/13 DVC Member Cruise, 10/13 BCV, 2nd 1/2 Marathon BCV 1/14
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Old 02-18-2010, 02:37 PM   #8
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Subscribing!

Sounds like you're little guy is a trooper! I hate needle sticks and iv ones are even worse! Last time I was in the hospital I threatened to kick the nurse if she messed up my iv one more time- and that was only after 3 tries! Your little boy is def more brave and patient than I was.
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Old 02-18-2010, 06:53 PM   #9
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This is a great start! Sounds like your kids are great.

Since this trip hasn't happened, yet, though, I'm going to move you over to the pre-trip report section. Once you've been and tell us how everything was, I can either move you back to the Trip Reports, or you can start another thread.

Thanks for sharing!
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Old 02-18-2010, 08:59 PM   #10
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I Found you :-) Yeah.. Can't wait to her more.. Subscribing :-)
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Lisa, Wife of 18-1/2 years to Mike and Mom to Christopher age 11 and twin girls Ashley and Jessica age 8
TEXAS
Disney Fantasy Apert Cruise May 11-18, 2013
http://www.apert.org/Bock
Ashley'sMAW pre-trip planning http://www.disboards.com/showthread....1#post35407954




May 9-13th
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Old 02-18-2010, 10:12 PM   #11
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Hooray, Mary..so glad to have found your PTR! I can only imagine what you went through with the port infection, I worry about that so much. At the same time, I'm heartened to see how long his port lasted. We've been told 5-6 yrs barring any huge growth spurt. At any rate, looking forward to following along, a cruise would be so neat!
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Old 02-18-2010, 10:43 PM   #12
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I found you, too!!!

I will list this in the index on the Wish Trippers thread, too!!

You and your family totally deserve this trip! It is going to be awesome!
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Old 02-18-2010, 11:28 PM   #13
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Do they not have the 5 year ear tubes? My Ash kept her tubes in from 6 mos to almost 5 years old, we just had them replaced last April. I think they are called T tubes?
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TEXAS
Disney Fantasy Apert Cruise May 11-18, 2013
http://www.apert.org/Bock
Ashley'sMAW pre-trip planning http://www.disboards.com/showthread....1#post35407954




May 9-13th
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Old 02-19-2010, 11:25 AM   #14
Maryrn11168
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Quote:
Originally Posted by Mtopher4 View Post
Do they not have the 5 year ear tubes? My Ash kept her tubes in from 6 mos to almost 5 years old, we just had them replaced last April. I think they are called T tubes?
He has had 3 sets of tubes. The last set were T-tubes, I was hoping to get more time out of them, but it was 2 1/2-3 years so I guess I can't complain.
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Mary-me DH- Woody, DS Bobby(15), DD Catherine (12) , DS Brian (11):

Honeymoon-Swan 1997,AKL 5/02, Off site 11/02, Hilton Head 8/03, OKW 11/03, Hilton Head 8/04, BCV 5/05, Boardwalk 5/06, Vero Beach 8/07, VWL 5/2008, Magic Western 10/08, BWV 11/08, HHI 8/09, Magic Eastern 3/10, SSR 10/10, Vero Beach 8/11, Dream 5-night 8/11, BLT 8/11, Disney 1/2 Marathon 1/12, 5/12 SSR, 6/12 Magic Weekend Getaway, 7/12 BCV, 9/13 DVC Member Cruise, 10/13 BCV, 2nd 1/2 Marathon BCV 1/14
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Old 02-19-2010, 11:45 AM   #15
Mtopher4
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Poor guy Ask for T tubes again... At least they last longer than the 1 year or 18 months the other do.
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TEXAS
Disney Fantasy Apert Cruise May 11-18, 2013
http://www.apert.org/Bock
Ashley'sMAW pre-trip planning http://www.disboards.com/showthread....1#post35407954




May 9-13th
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