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Tuesday, April 12, 2016

Disney Fantasy Stateroom 8588

Here is a quick report on stateroom 8588 on the Disney Fantasy. It is an accessible stateroom located on deck 8 mid-ship it is close to the elevators and very spacious! There is a full size bed, sofa bed, pull down berth and a murphy bed. The verandah is also a bit biger than normal(but not as huge as the aft staeroom we stayed in on the Wonder)

View from the door looking into the stateroom


Desk area was large with plenty of storage




 We had my son's Manual chair as well as a lightweight travel chair(for port adventures) with us. The manual chair is pediatric size but the travel chair is adult sized so this picture can give you some idea of the space.



We did not use this, but it is the murphy bed on the wall.



Nice big closets with large area in front. I forgot to get a picture of the inside, but the one closet had the pull down closet rod :)





I use a CPAP at night and so the plug  under the shelf next to the bed was great!


The bathroom is not separated since it is an accessible one. The pull down bench in the shower was sturdy and stayed up when not in use. Great layout and use of space.








The door to the stateroom is automatic. When you put your card on the sensor on the wall outside the stateroom, the door will open automatcally. From inside the stateroom there is a switch to push on the wall next to the bathroom door.


The air conditioner controls are next to the door as well as the energy saving key slot.


There are also 4 hooks on the wall next to the door. I found it very convenient  to hang our lanyards there :)


The verandah was a good size with 2 chairs and a side table. Definetely large enough to fit at least one wheelchair and several people :)



Embarkation day!

April 2, 2016

Super Lu here again! Today was embarkation day! The family was up early and had a quick breakfast at the hotel and headed to the port a little before 10:00 am. We caught sight of the Disney Fantasy and boy was she a sight to see! Because we have a modified van with a ramp we were allowed to park for free at the port. That saved quite a bit! Last cruise the family had trouble finding a spot to park, but this time an accessible spot had just opened up on the 3rd floor of the parking garage, right next to the bridge that led to the terminal. Great start for our adventure! The line had already begun to form so the crew headed to the back of the line. It was difficult to manuveur in the line as it was not wide enough at one point for Bobby's wheelchair to stay in line and go between the wall and the cars. We had both Bobby's manual chair and a travel wheelchair(it collapsed flat and that was the kind needed for the port adventure in Cozumel, but would not provide enough support for long term use) So with 3 large suitcases and 2 wheelchairs(the travel chair held all the carryon stuff) it was difficult to manuveur in line as the porters didn't get to us before they started moving the line over the bridge. A nice family ahead of us saw the difficulty and each one helped with an item. Proof again that there are good people left in this weary world :) The porter came after we had to wait a few minutes as others went onto the bridge, so we finally got to cross onto the bridge. Being so close to the Disney Fantasy was very exciting!
We only waited a few more minutes before being let into the terminal. Soon we were checking in and getting our lanyards and cards. We then headed to the kids club desk and the boys received their magic bands for the kids club. Bobby really wanted to look at the model of the ship, but by then that area was too crowded to get his wheelchair through. We opted instead to go out onto the observation deck and look at the real thing up close.




Soon we were able to board and the excitement continued to build as they took our embarkation picture.

How thrilling to hear them welcome the Baird family on board! We headed immediately to deck 4 to secure tickets for the Frozen and Princess meet and greets as well as the character breakfast then it was off to deck 11 and lunch at Cabanas.What a delicious start to our voyage!




After lunch we had a few minutes to kill before we could go to our stateroom so we visited the kids club to look around. The boys wanted a picture in the Monsters Inc room and the Toy Story room. There was so much to see and so much for the boys to look forward to doing!

We then headed to deck 8 and waited until it was finally 1:30 so we could check out our stateroom. It was in a great location being mid-ship and close to the elevators. There will be a separate report detailing this acessible stateroom for those who may be looking to check out what this category accessible stateroom looks like :)
Beth unpacked a bit and then we headed back out to deck 4 to be ready for the muster drill which began promptly at 4:00.

After the muster drill, it was up to deck 11 for the Sail Away show. The boys had a front row spot!








Instead of staying for the dance party after the show, the family headed back to their stateroom so they could stand on the verandah and wave at the people at Fishlips and the other restaurants and park at the port.



Soon it was time to change for dinner. Tonight's dinner was at Animator's palate. Crush swims around from screen to screen and interacts with some of the guests. This time he chose to speak to the one in the red floral shell(which was Beth) Such fun interacting with a famous sea turtle dude!


We had time before the show to see a couple of characters, so we visited with Minnie and Pluto!

After enjoying the Welcome Aboard show it was time for bed. Awaiting us in the stateroom was a stingray, tomorrow's Navigator and some chocolates! This week is going to be excellent! Tomorrow is our first day at sea! Here's hoping that neither David nor this reporter have trouble with the motion of the ocean!

Pre-Cruise Report

Super Lu here with my report on my latest adventure with the Baird family. We were without internet on this trip so this report is post cruise.

March 31, 2016
Pre- Cruise day-
The van was packed, Mickey dropped off at the pet resort, and we were ready to take off as soon as the boys got off the bus! We were headed south and hoping to make it to Gainesville Florida and have a short visit with Taylor before heading off to Port Canaveral on Friday.

The boys bus arrived right on time and the boys were so excited to start the journey. Traffic was light most of the way and so we did make it to Gainesville, Florida. Then we had a little problem. There was a race scheduled in Gainesville the next day and there were no hotel rooms available in Gainesville, Ocala or Wildwood! So the family only spent a few short minutes seeing Taylor before continuing the drive south. Finally a room was found in Orlando which made for a very late night!

A perk for driving so far and staying at the Best Western was getting some special waffles at breakfast. What a nice surprise!

Since we were already in Orlando, a jaunt over to the Character Warehouse was in order! This is the Disney Outlet store and a few items made their way to the van. Bobby modeled a Gaston's Tavern hat since Gaston is his sister's favorite!
Our journey continued on as we headed towards Port Canaveral. What a sight as we crested the bridge! There was the Disney Dream, sister ship to the Disney Fantasy. Sorry no photo because this reporter was too much in awe and Beth was driving. We checked in to the Country Inn and Suites and relaxed for a bit. We then headed to Fishlips so we could wave off the Disney Dream as she set sail. The boys enjoyed some Sprite and Beth had a delicious Key Lime Colada. Dinner ended up being yummy pretzel sticks with cheese dip and also some spinach dip with chips and bread. The highlight was being able to wave to the lucky cruisers on the Disney Dream as she sailed out of the port. We knew that tomorrow, others would be standing in this same spot waving at us!

 





 
We all headed to bed early as we were due at the port in the morning with a check in time of 10:30 am!

Thursday, January 21, 2016

Dear FDA

Dear FDA,

While I know the impending winter storm precipitated your postponement of the Adcomm meeting scheduled for January 22nd, I implore you to reschedule it as soon as possible. So many families had already traveled to DC or were on their way prior to the meeting being postponed. These families and the rest of the Duchenne community know that our children do not have the time for further delays. Duchenne does not stop it’s progression to wait for postponements, delays or for that matter any reason. It is relentless in its continued deterioration of our children.

Today was a day full of reminders  that my son has limited time. Today was the 100th day of school. He was to dress as what he would look like when he was 100 years old. While I realize not many of us actually make it to our 100th birthday, those with Duchenne currently have zero chance of reaching that age. So in thinking again I realized that my sweet 9 year old son, statistically speaking, is considered middle aged when looking at the average life expectancy for those with Duchenne. So maybe his costume today wasn’t all that off. His 100, statistically speaking, would then be somewhere in his mid to late 20’s.


My family’s story is a bit different than most families dealing with Duchenne. I started out as a volunteer summer camp counselor for MDA in 1980 and continued through 2012. I met and lost so many campers/friends over those years. I saw what Duchenne does, but there was always hope as the research was ongoing. In 2012 I decided to adopt a child. I saw my son’s picture on my agency's website and saw his diagnosis and knew that he was my son. I could not let him face Duchenne alone. I knew he would most likely not receive any treatment in his birth country due to his orphan status and their lack of knowledge about neuromuscular diseases.

Eteplirsen will not help my son, but it will help others and it will help pave the way for exon skipping 53 that will help my son. I adopted my son in order to provide him a family to help support him through this disease and because I knew that medical care and research in the US was one of his best chances to have a better quality and longer life. Please don’t prove that wrong. Our community understands that it will most likely take a cocktail of drugs to ultimately provide a cure. Anything that can slow the progression and allow those with Duchenne to live longer and stronger will give them a better shot at being around for the cure.

Right now there isn’t a treatment available. For a child who produces no dystrophin to produce any amount of dystrophin is a big deal. There have not been safety issues or detrimental side effects. Please listen to those who have been going through the drug trials. Look at them and see the children that have been able to have access to Eteplirsen.

Just because I knew before adopting my son that he had Duchenne and all about the devestation of DMD does not mean that watching his progression doesn't break my heart daily. It also doesn't mean that I resigned myself to sit back and watch that happen. On the contrary, I got to skip the initial diagnosis shock stage and start instead in the fight for my son's life stage.


Our country is a great country and my son is now a proud American. Please allow my son a chance to grow old. Please don’t make his birth country regret adopting to an American family instead of a family from another country who may allow him access to drugs that will help slow or halt the progression of his Duchenne.

 I hold out hope that you will consider all the positives seen in the drug trials(no matter how small you may think they are, as to those of us fighting the fight against the villianous Duchenne, small victories are huge!) I count on you to do the right thing and allow Eteplirsen accelerated approval. I count on you to not take away our hope.

                                                                           Sincerely,
                                                                              Beth Baird
                                                                              Mom to Bobby Baird age 9












Saturday, November 21, 2015

Goodbyes

Today was the day for final goodbyes to my dad. I had a dream last night that nobody came to the service except Taylor, the boys and I. Not a great start for the day.

We had a small ceremony at the Columbarium in the Memorial Garden at the church and then the memorial service in the chapel. Several of my dad's friends were there representing different areas of his life and several of my friends also attended as did Taylor's best friend. Many wore gold and black for the Iowa Hawkeyes and in memory of my dad. Both Taylor and I spoke at the service and she did a great job! I know her Papa is proud!

The pastor was impressed that my dad had left behind a 10 page typed packet of notes from many of the years of his life that detailed his most important memories. It is a treasure that I have it. The pastor encouraged all of us to sit down and do something similar as we give thanks this coming week. To leave behind such memoirs is a gift for our loved ones and friends.

I managed to get through my part and thought I would include my tribute to my dad here. As I begin to move forward with life again, I know I will miss him dearly, but I know that he and my mom are together and watching to see what life brings us next.

My dad was a huge sports fan. The Iowa Hawkeyes were his passion. He followed college sports and loved to banter back and forth with so many friends and their rival teams. We often scheduled things around when the Hawks played. He is certainly smiling now with the Hawkeyes being undefeated and my standing up here in a Hawkeye shirt. Today is an Iowa Game day as well as my grandfather’s birthday, so it is a fitting day to celebrate my dad’s life.
This is the second time I have stood up here. When I lost mom in 2013 it was hard, but since she had gone through the ravages of Alzheimer’s I had lost her slowly over many years and her passing was more expected and a release from the bonds of a disease that took her memories and mind. This time it is much more difficult. Dad was still active and sharp as a tack. He had recovered very well from his gallbladder surgery and was expected to only need some physical rehab for a week. Instead he was talking to me one moment about emailing Chris about stocks and options and gone in an instant.  It has truly been a shock to my system.
With mom I lost my confidant. With my dad I lost my advisor, my rock, my hero.
I remember my dad telling me that he felt like he traveled too much as I grew up. He was afraid that I felt he wasn’t there enough. But I don’t remember him as always traveling or being gone. He made sure that the time he was not traveling was family time. I remember looking up and seeing him cheering me on at the swim meets and at the soccer games when I was a young child in Ohio. I remember building huge snowmen with him and going sledding and ice skating. He was my biggest supporter and always cheering at my softball games when we moved to Atlanta. He came to watch me at football games as I performed in the marching band. He sat through many concerts through many years as I was in a couple of bands during high school. I remember going to Hilton Head and Sanibel. I remember Iowa bowl game trips especially going to the 1982 Rose Bowl.  I remember family vacations whether on our own to places like Disney World or with other family friends to Mammoth Caves. I remember election night parties and holiday dinners.  I remember him as always being there.
My parents were not huge disciplinarians with me. My dad told me I was a very good child with only a few months of “drama” when I was 13. If there was ever a time I may have gotten in trouble, my mom would say the words I dreaded “We will talk about this when your dad gets home” I would have much preferred the yardstick to be brought out and used than to get the lecture from my dad. I never wanted to disappoint him….
When I became pregnant with my daughter Taylor, my dad was looking at property in the mountains that they would move to. He told my mom “We won’t be that involved in our grandchild’s life” My mom laughed at him and told him that his granddaughter would have him wrapped around her little finger as soon as she was born. Boy was my mom right and my dad wrong! Taylor had him wrapped at first sight. They were an integral part of her life. Once I divorced and became a single mom, they stepped in and lessened my mommy guilt for working long hours by picking up Taylor from daycare a few times a week and having her spend a night a week with them. My dad loved having Taylor around and delighted in all of her antics. She was one lucky girl to be able to spend so much time with her grandparents.
My dad also delighted in his first grandson, Bobby. He was impressed with his Lego creation abilities and loved to wear his Lao Ye Chinese shirt when we would meet for a meal. He loved that Bobby and I finally found the prized shell of Sanibel that dad and I had been searching for since our first visits to the island.
 Dad also enjoyed meeting David and David cheered him on as he got up and walked the first couple of times after surgery. My dad would smile as David said “Good job Lao Ye!” I am so sad that my boys did not get more time to spend with such a positive male role model. My dad would have loved that David shares his love of sports and would have become his game watching buddy.
As I have received notes about my dad, I am beginning to realize that while I am very much like my mom, I am also very much like my dad. I learned from what was modeled, by how his life was lived. My heart for helping others came not only from my mom, but also I am finding out from my dad. My desire to help others, but to do so quietly and behind the scenes is very much like him.  Doing my best at everything I attempt and knowing that we all make mistakes that we can learn from also comes from him. One time I had to admit to him that I had not followed one of his life lessons he had tried to teach me. It was harder to tell him that than the fallout from my not following his advice. He reassured me that he hadn’t always followed his own advice on that one either and had made the same mistake. His “fatherly advice” was to just move forward and know that everyone makes mistakes.
When I decided to adopt a child, I got up the courage to tell me dad. I wasn’t sure what he would think since I was already a single mom and older and because I wanted to adopt a child with special needs. I remember him smiling and saying “This does not surprise me at all. You have the heart for these kids” He even wrote the family reference letter. When I decided to adopt one more son he was fully supportive.
My parents both taught me about the joy of adoption by the way they raised me and told me my story. Adoption was never a taboo subject in our house as it was for many back in the 60’s and 70’s, rather it was something that was normal and to be celebrated. I was and will forever be their chosen one. I am so very grateful and thankful to have been adopted by my parents. I know how lucky I am. I know that I got the best. I know that my dad was the best male role model I could ever have had. He was a great teacher of life lessons and of how to treat others. He gave me a solid foundation to build my life on and made me the strong person I am today. He gave me the confidence to be a single mom and to continue to take on challenges. Genetics may be strong but he proved that the environment can be just as strong if not stronger. He never considered me his adopted daughter. I was just his daughter and in the end when I was discussing the validity of some of the things I read about adopted kids he finally realized I was talking about myself. He said “Oh, you are talking about yourself. I forget that we adopted you.” Yep, any man can be a father but it truly takes someone special to be a dad.  My dad was very special and I will miss him greatly

Bye dad, I love you! Give mom a hug from me! Go hawks!



Thursday, October 29, 2015

2 Weeks and Blank Lines

It’s been a little over 2 weeks since my dad passed away. I still expect to see his name pop up on my caller ID as it did almost every day or to check voicemail and have 2 or 3 from him. Instead the phone is relatively silent with only a telemarketer here and there and the occasional call from Taylor. My voice mail is now empty with no new “words of fatherly advice”.
Dealing with my dad’s death has been vastly different than dealing with my mom’s death. She had early onset Alzheimer’s and we had been slowly losing her for a long time. At the end she did not recognize any of us and so while I grieved I also knew mom’s suffering had ended. Dad had made it through gallbladder surgery and was doing well.  He had just been discharged and I had just gotten him settled in at the rehab facility that we thought he would be at for maybe a week. He had been talking to me about the list of things he needed to do and for me to bring my computer so I could get him hooked up to his email the next day. As the boys and I were saying “seeing you tomorrow”, he had a seizure like incident. The ER doctor said it most likely was a blood clot and just like that he was gone. It was so sudden and so unexpected and I was just numb and in shock.  I still am and it seems like I can’t stop the tears.
At the rehab facility as I sat in the hallway waiting as they attempted CPR and called in the paramedics, I could hardly think. The boys had been shooed into the internet cafĂ© room and I am sure were very confused. The head nurse came to me and asked if I wanted them to continue CPR. I said yes because just a few seconds earlier he had been just fine. They told me it didn’t look good and that I might have to make some decisions when we got to the hospital. My dad and mom had made me promise to “pull the plug” when the time came. There hadn’t been a plug to pull for mom and I wasn’t sure if I could make that decision for my dad. I am so thankful for the kindness of strangers that day. One man stopped and asked if he could pray with me and put his hand on my shoulder and started to pray. Another lady stopped in and checked on the boys a couple of times and then would come and just stand by me. Several times, by various people I was asked if there was someone they could call to come or that could come drive me to the hospital. All I could answer is “There is no one. There is only me. I am alone.” 
I know I am not truly alone, but at times it does seem so right now. I am really an introvert. There have been several articles circulating FB recently that are spot on about those of us who are introverts. I need alone time to recharge as social situations drain me. I don’t like small talk but will talk for hours about topics I am passionate about. I don’t like to talk to people I don’t know (in person or on the phone.) I don’t particularly care to be in large groups and do much better in one on one or small group interactions. I am an observer and a listener. I often run through dialogue in my head first and think things through before I speak. Most of my life I have had to step out of my comfort zone in order to participate in social interactions. I prefer to have a small core group of friends and am very loyal to those I let into my circle.  Unfortunately I have also tightened up that circle as I have had a few people I thought were good friends turn into something else and my walls went back up. Since I retired I have had very little adult conversations as I no longer go to work. I am not good at reaching out to others to initiate or keep in contact. I prefer to be a helper and do not ask for help myself. I am no longer sure where I fit in society. Most of the people I knew before adoption are now retired with grown children or still working with grown children. I am a retired single mom with one grown child and 2 elementary aged sons with special needs. All of this leads to feeling alone. I am surrounded by support and friends on FB, but when it comes to “Who can we call to help you?” or now that dreaded line for a local emergency contact person on the school paperwork, I feel alone. Now with my dad gone, that line is blank. There are 4 lines on the afterschool program registration form. If I can’t fill on the one emergency contact for the school form, there is no way I can fill out the 4 for the afterschool program registration. So the lines are blank and the boys aren’t registered for the afterschool program and thus no back up plan is in place if I am ever running late or something happens.
I know I need to rebuild my village locally. I have great people in Cincinnati who will make sure that my kids are taken care of if something were to happen to me, but what happens in the interim, until they can get here? Or what if I am delayed and can’t meet the boy’s bus one day? What if I need outpatient surgery? What if….. I know I need to step out of my comfort zone again and start to build a local support system for my boys. I just don’t know where to start. I don’t like to ask for help as I don’t want to put people out or make anyone feel obligated to say yes. Probably another reason is I am also afraid that no one will want to be a part of my village. If you build it they will come…..but what if they don’t?
I have to mention that I am so lucky to have a friend like Jamie who knew I would not ask for help, who dropped everything and would not take "No" for an answer and came and stayed with me for those first few days after my dad passed away. She cleaned, cooked and just sat with me. I am also still in awe that another adoptive mom that I only know through FB also dropped everything and headed my way only to be stopped by mechanical issues. Priscilla did that even though she was traveling to pick up her son this past weekend in Bulgaria.

I did take a step forward locally and have reached out to a fellow DMD mom. Gretchen and I enjoyed a great lunch and good conversation. So maybe one line is filled, but the others are still blank. 
I am hoping that maybe once I can get through these next few weeks of dealing with all that comes along with a parent’s death, I can figure out how to start rebuilding my village locally. I need people to spend time with as do my boys and those blank lines need to be filled. So I will try to build it. Will you come?