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Old 06-29-2011, 05:36 PM   #1
danut
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Brendan's Big Boom MAW trip to Disney!

Hi everyone! I have been lurking here awhile, but this is my first post. I am still trying to figure out the best way to do this...so I will start with introductions. I must warn you it is long!

I am Dana and a SAHM to 3 boys and a little girl. My husband is Brian and is a practice manager for a software company. He traveled a lot when he was young due to his father working for the airlines. So, he has been to Disney many, many times. I had never been, so when we got married way back in 1998, we decided to go to WDW on our honeymoon. I loved it. SO much to do and great for us kids at heart!

Shortly after we married, I became pregnant and gave birth to a beautiful baby boy who we named Nolan. Nolan is 12 and loves anything sports especially the Pittsburgh Steelers. This will be his 3rd trip to Disney. Last time we were there he was about 8. Since he is older now, I hope that he can still appreciate it as much as the rest of us will.

Next in line is Brendan, but I am going to skip him for now since his story is the longest. After we gave birth to Brendan, we waited 6 months to start trying for another baby. However, once Brendan was diagnosed with a genetic condition all that was put on hold. Once we learned that we did not pass his condition on to him, we started trying again and I gave birth to yet another boy! We named him Connor and he is now 7. This will also be his 3rd trip to Disney. The last time he was there, he was about 3. Connor is my writer and artist. Give him a pad of paper, pen and pencils and a box of crayons and he is happy forever!

The baby of our family was a big ole surprise! We were planning on keeping our family to five, when I found out about 11 months after Connor was born that I was pregnant. This time I gave birth to a beautiful baby GIRL! She is five years old now and this will be her second trip to Disney. Her first trip she was 2, but loved it. I think that the age that she is at now is a perfect time to go back. We actually might be there on her birthday too, which I think is awesome! She is my gymnast and dancer and princess. She is an althlete, but is so girly and loves clothes and makeup and of course LOVES the princesses!

Next is the backround on Brendan. It's long, so if you don't have time, you just may only want to read the first couple sentences!

Ok, Brendan. Our wish kid. He is 10. This will also be his third trip to Disney. Last time he was there, he was 6. Brendan was born with a genetic disorder called Neurofibromatosis Type 1. It is inherited, but can also be spontaneous. In Brendan's case it was spontaneous. NF1 can cause a wide range of symptoms. The most common and alarming symptom is that tumors can grow anywhere that there is a nerve. Since our bodies are full of nerves, tumors can grow anywhere. I had a normal pregnancy and a fast but normal delivery with Brendan! He was 7lbs 4 oz and things became crazy right off the start! Brendan had no interest in eating so it came to a point where I had to feed him every 2 hours round the clock so that he would gain weight and avoid getting a feeding tube. Although food and eating is still an issue today, luckily he eats more than when he was first born! When he was 6 months old, I took him in for a pediatrician visit when an intern noticed cafe au lait spots on him, which I had always thought were birthmarks. She said that they may be a sign of a disorder called Neurofibromatosis and that she would get back to me if she thought there was a concern. Well, a few hours later, she called with a referral to our NF Clinic at Children's Hospital. Luckily we got in very quickly, but unluckily and to our astonishment, Brendan was diagnosed with NF. A month later, he had his first brain MRI to check for tumors and in the meantime I began reading anything and everything on NF. At about 10 months of age, I noticed that Brendan's left leg was more bowed than his right. Since I knew that pseudoarthrosis, which is basically a weakening of the long ones could occur with NF, I took him to the pediatrician, who referred us out to the orthopedic surgeon who confirmed tibial bowing and fibular pseudoarthrosis. The break in the fibula was presumed to have happened congenitally. Within a month, Brendan was fitted for a clamshell brace. The first surgeon we saw basically told us that Brendan's case would end in amputation. Right away, we made an appointment for a second opinion. This doctor had a much better bedside manner and told us that although difficult to treat if Brendan could go without breaking his tibia then it would have a chance of strengthening as he grew older. So for the next 4 years, not much happened. Brendan continued to be followed by the NF Clinic and have MRIs and continued to be followed by orthopedics. Brendan displaced the fibular pseudoarthrosis twice and was casted both times for that. He also because of pain was presumed to possibly have a tibia hairline fracture and was casted for that, but even with all the casts and braces and doctors appointments and tests, he still managed to live life pretty normal. In the meantime, the orthopedic surgeon we loved retired and Brendan also began having more pain and begin turning his foot inward dramatically. Although Brendan had never fractured, because of pain and loss of function, we decided to go ahead with his first surgery. In June of 2005, his surgeon cut out diseased bone from his leg, put a rod in his tibia and added a bone graph from his same leg fibula. He left the rod coming out the bottom of the foot to stabilize it for 6 weeks. Once the 6 weeks were up, Brendan was put under again and had the rod shortened and was casted for an additional 3 months. Healing was slow and Brendan continued to be braced. In April of 2006, Brendan began having more pain and it was confirmed through x-rays that the rod had slipped down and was causing pain. This time, Brendan had bone removed, replacement of the rod, a screw added to prevent slippage and also artificial bone. Brendan was managing and we thought things were going along fine. We were seeing healing on the x-ray and were pleased with them. But Brendan continued to have pain. In January of 2010, a CT scan was preformed which confirmed that the bone did not heal correctly. It also confirmed osteopenia in Brendan's foot. At this time, Brian and I were doing a lot of talking about amputation. We really think that function is important and we also didnt want Brendan to lose his childhood to constant surgeries. We decided to go for a second opinion to Shriners in Philadelphia before amputating. So, Easter weekend 2010, we head to Philadelphia to Shriners for a second opinion. Second opinion doctor looked over the x-rays and agreed that Brendan's bone looked good compared to others with the same thing and that he felt he had a good chance of healing. I ask him what he would do if this is his child and he said he would try the surgery. So, on July 26th, 2010, Brendan had some bone removed, artificial bone and something called BMP to aid in healing. The doctor left the current rod and screw in and he tried to manipulate the bone to straighten it some. Surgery went like others. Nothing out of the ordinary. Bent leg cast and non weight bearing. So we head back to the surgeon's office 8 weeks later on Sept 22,2010 expecting to be changed to long leg walking cast and instead discover that the rod in his leg broke while he was non weight bearing. No falls or anything. Just happened. At that point our surgeon wanted to redo the surgery and I said no. I said we were seriously considering amputation before this last surgery and I am not doing the same thing that hasn't worked time and time before. So, the doctor asked me to please talk to another surgeon about free vascular fibular transplant. This would involve removing the good fibula from Brendan's good leg and graphing it along with the vessels to his bad leg. I told him we we mostly would not do it, because we did not want to touch Brendan's good leg, but I would at least talk to the surgeon. SInce I seriously figured we would be amputating and did not want to wait long, I explained the situation to the lovely and I do mean lovely workers from Dr. Ps office who got us in within 10 days instead of the 6 week wait that was originally given to us. The day before the appointment, my husband says, "Should we even go? We know we would not do the surgery, so why even see him." But, I felt like we owed it to at least talk to the guy. So, on October 1st, we met Dr. P. Dr. P told us he wouldn't do the free fib instead he would removed all the diseased bone and then apply an ilizarov frame and make another osteotomy site at the top of the tibia so that we could use osteogenisis distraction to grow new bone. HUH? You can grow new bone? That was our first question. So after many talks with the doctor, each other and many friends regarding surgery and amputation, we decided to move forward with the surgery. On November 3rd, Dr. P removed over 3 cm of diseased bone and performed a ostetomy or cut at the top of the tibia. For 31 days we moved or transported Brendan's bone so the bones would touch. Then for another 27 days, we lengthened his leg because of his sizable leg length discrepancy. After that it was dealing with infections. Not too bad until April 13 when he had his first cellulitis infection. IV antibiotics were given at the ER and then more oral antibiotics for at home. Then on April 29th another cellulitis infection occurred. This one was worse. Ended up inpatient on antibiotics. His surgeon happened to be giving a lecture in the area and stopped to see him on the 30th before the lecture and said the middle pins in the frame were coming out. At that time, he would also see if the bone was strong enough for the entire frame to be removed. So on April 30th, he had surgery to remove the two middle pins and he didn't get another infection. Unfortunately, the bone was still soft, so we needed to wait longer and the frame needed to stay on.... Follow up was on May 23rd in hopes of getting the frame off on June 1st, but once again the answer was no. It was not ready. So on June 13th we went back for another follow up and this time decided it was time to remove the frame! Woo Hoo! Surgery was June 15th 2011. Bone looked good and improved tremendously, but unfortunately the callus was not strong enough to do its job alone so Brendan also had a plate and 8 screws put in his leg. He is in a long leg cast until July 1st and then will switch to a waterproof short leg cast for another 4 weeks. After that we hope to go into a tib/fib fracture brace to protect it while it continues to heal. We go back Friday, so we are hoping for some good news. Unfortunately, in addition to the leg issues that we have been dealing with, Brendan also is developmentally delayed, has ADHD, Sensory Issues, Auditory Processing Disorder, Asthma, Reflux, Allergies and another extremely concerning issue is that he developed Nerve Root Tumors on his spine which are now being carefully watched. He is also growing at an alarmingly slow rate for which there is no known reason. Unfortunately, NF is a chronic and progressive disease that will only worsen as Brendan gets older.

Anyway....with all this going on, I finally decided to request a wish for Brendan back in April and he was approved! We waited on him deciding what he wanted his wish to be until he had the metal halo removed from is leg, since we knew that amusement parks were on his list and in the frame he wouldn't have been able to ride anything at one. Anyway after the frame was removed and after weighing many ideas Brendan finally decided that he wanted to do to Disney World and help light or kick off the fireworks celebration one night. We just told his Wish Granter his wish two days ago and she called yesterday to say that they are on it and finishing up the approval process. If everything goes okay, we will be there in October. Since the last year especially has been rough on everyone, I am really looking forward to an amazing trip where we can all forget for awhile and have fun. I hope I didn't bore you all to death with all our details and I can't wait find out all the amazing tips you share! Thanks for reading!
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TRIP DATES 10/9/11 to 10/15/11

Pre-trip Report Brendan's Big Boom MAW Trip to Disney

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Old 06-29-2011, 09:47 PM   #2
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Great start to your PTR! Love his wish to help set off the fireworks!! That would be really cool! Can't wait to read more about your family and your son's wish.
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Old 06-30-2011, 08:08 AM   #3
danut
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Great start to your PTR! Love his wish to help set off the fireworks!! That would be really cool! Can't wait to read more about your family and your son's wish.
Thank you! I cannot wait to add more. Tomorrow we get more x-rays for Brendan and according to our wish givers, we should know within the next week if the doctor approved the trip and what our dates our so that we can plan a little better!
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TRIP DATES 10/9/11 to 10/15/11

Pre-trip Report Brendan's Big Boom MAW Trip to Disney

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Old 06-30-2011, 07:42 PM   #4
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Welcome to the board i am new too but very excited to hear about how your planning goes for you. Looks and sounds like you have some great kiddos!!!
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Old 06-30-2011, 08:10 PM   #5
danut
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Thank you! And I noticed your "Wish Child" is the same age as mine! Can't wait to hear about your adventures, as well!
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TRIP DATES 10/9/11 to 10/15/11

Pre-trip Report Brendan's Big Boom MAW Trip to Disney

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Old 07-01-2011, 12:10 PM   #6
katieb4
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wow! what a journey your son has had!

It was fun to read your thread, we have things in common. My hubby is Brian, and my kids are aged 12, 11, 6 and 4. AND we are going to Disney/GKTW in October.

I look forward to following you along in your planning.
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http://http://www.disboards.com/showthread.php?p=41135717

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Old 07-01-2011, 12:35 PM   #7
danut
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wow! what a journey your son has had!

It was fun to read your thread, we have things in common. My hubby is Brian, and my kids are aged 12, 11, 6 and 4. AND we are going to Disney/GKTW in October.

I look forward to following you along in your planning.
Wow...that is a lot in common Can't wait to read your pre-trip report too. I sometimes find it hard with the age differences to make sure I find things that all the kids can do and enjoy.
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TRIP DATES 10/9/11 to 10/15/11

Pre-trip Report Brendan's Big Boom MAW Trip to Disney

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Old 07-01-2011, 06:09 PM   #8
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joining in!
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Old 07-02-2011, 07:49 AM   #9
danut
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Hi Petals....Glad you joined

As for us still waiting to hear about our dates, but should hear something next week. In the meantime, we were at the orthopedic surgeons yesterday and Brendan got 16 stitches out of his leg But he got changed to s short leg waterproof cast. He has to wait a few days but then he can shower and go swimming and we won't have to worry about using any kind of cover. This is our ticket to swimming and having other fun this summer. We lost much of last and part of this summer, so we all can't wait. In the meantime headed out. My husband coaches and Brendan (when healthy) plays in two Miracle League Baseball teams and dh also coordinates the competitive division for special needs kids and we have two games today and I am going to be late. Hopefully after the weekend, I can update some more about who we are and what we like, especially Brendan since I realized I focused too much on his medical and not enough on him and he is a great kid to get to know!
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Old 07-02-2011, 08:09 AM   #10
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to the DIS and CONGRATULATIONS on the wish! I love how you have jumped right in and made yourself at home, that is the way to do it! Thank you for visiting our PTR!

Quote:
Originally Posted by danut View Post
Wow...that is a lot in common Can't wait to read your pre-trip report too. I sometimes find it hard with the age differences to make sure I find things that all the kids can do and enjoy.
I can relate my oldest will be TWENTY ONE next month and the baby is 8....Ithey are great about realizing it is always NOT about them, and actually allows the older ones "permission"to enjoy things that make them feel young.
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Hi Petals....Glad you joined

As for us still waiting to hear about our dates, but should hear something next week. In the meantime, we were at the orthopedic surgeons yesterday and Brendan got 16 stitches out of his leg But he got changed to s short leg waterproof cast. He has to wait a few days but then he can shower and go swimming and we won't have to worry about using any kind of cover. This is our ticket to swimming and having other fun this summer. We lost much of last and part of this summer, so we all can't wait. In the meantime headed out. My husband coaches and Brendan (when healthy) plays in two Miracle League Baseball teams and dh also coordinates the competitive division for special needs kids and we have two games today and I am going to be late. Hopefully after the weekend, I can update some more about who we are and what we like, especially Brendan since I realized I focused too much on his medical and not enough on him and he is a great kid to get to know!

Your children are beautiful/handsome and you are right , they are so much more than a diagnosis. I for one love reading about it all! It helps me to "know" you better and to understand what you have been dealing with...AND it lets us see the joy of being a child! Yea for getting some of the stitches out and I will be here for the journey....ups, downs and life stuff to! WE NEED more photos!!! and of you and DH too!
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Old 07-03-2011, 12:49 PM   #11
danut
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Thanks, Judy! I am enjoying getting to know you and yours throughout your thread as well!

Well, it was a rough weekend. Brendan was casted too tight and we were at the ER last night. He had to have his cast cut down and we head to the surgeon yet again to get recasted. So much for going back in 6 weeks.

So, exhausting weekend, but I will get more pics etc up next week! I love seeing how close this board is!
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TRIP DATES 10/9/11 to 10/15/11

Pre-trip Report Brendan's Big Boom MAW Trip to Disney

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Old 07-03-2011, 02:27 PM   #12
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Joining in, and getting excited for your family! I was lucky enough to get to go with a family as their nurse. Great memories!
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Old 07-04-2011, 04:26 AM   #13
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Joining in, and getting excited for your family! I was lucky enough to get to go with a family as their nurse. Great memories!
How did that go, I would LOVE to hear!



Here is a big boom for all of you! I will think of Brendan when I hear the fireworks tonight!
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Old 07-04-2011, 09:26 AM   #14
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How did that go, I would LOVE to hear!


Me too!


Here is a big boom for all of you! I will think of Brendan when I hear the fireworks tonight!
THANK YOU! That is so sweet
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TRIP DATES 10/9/11 to 10/15/11

Pre-trip Report Brendan's Big Boom MAW Trip to Disney

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Old 07-04-2011, 04:17 PM   #15
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Getting to go on a wish trip as "the nurse" was amazing! Jr.'s mom is also my best friend so there was no awkwardness, I am like part of the family. He was actually my first home health patient. I work with special need kids and supervise private duty pediatric skilled nursing care. I have referred lots of kids for wishes, and getting to actually go to the village was amazing, I plan to volunteer as a wish granter next year. I would love to retire as a volunteer at GKTW village. I think most patients don't require a nurse, but Jr. requires suctioning, tube feedings and diaper changes around the clock. He only tolerated the parks for short intervals, and my being there allowed his parents and sisters to participate in lots more than they could have. I will be happy to answer any questions!
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