My Blog List

Friday, September 28, 2012

We went to Disney World!!

Our family took a vacation to Disney World! I cannot describe just how magical this adventure has been for our family. We have had a few bumps in the road this summer and Disney was just what our family needed. I originally booked this vacation back in February of this year. I wanted our first visit to be at a time of year that was not so busy because I was not sure how the kids would do in large crowds. September was a great time to go despite the rain we experienced every day. Hayden has been counting down for months and Monday the 17th arrived and he knew it was time to go to Mickey's house. We flew out of BWI instead of Philadelphia so we could fly during Julia's nap schedule and catch a direct flight. On our way to Baltimore Hayden kept saying are we there yet mommy. Thank goodness we did not drive 18 hours. I was so worried about how we were going to manage 4 pieces of luggage, carryons, strollers, two kids and my husband and I. We survived! I dropped my hubby and the kids at the departure for southwest and off to long term parking I went.

Once I arrived back with my family we curbside checked our luggage and off to security we went. As many of you are aware Hayden is not able to walk independent and he was in his stroller and so was Julia. I don't think the security agents at BWI understood and they made us take him out of the stroller and walk him through the security check point. Luckily Hayden is only 32 pounds and he is not terribly heavy to lift. I do wonder how we will tackle this obstacle when he is bigger?  Once through security we grabbed a bite to eat and had to quickly board our flight. I have to say I love Southwest! I was nervous with the no assigned seats but we were able to pre board which made things so easy. I loved that we could have the kids in the strollers until we reached the airplane door. Hayden was so excited to fly on the airplane but I must admit I was nervous about how the kids would do.  Well, my nerves were not needed they were amazing. Julia fell asleep an hour into the flight. She was too busy wanting to see all the passengers to fall asleep right away. I followed the doctors orders and had both kids drinking on take off. However, I felt terrible Julia was sound asleep when we were landing she woke up screaming. I think her poor ears popped. Lesson learned even if your child is asleep wake them up to avoid the ear pressure.

It was a two hour flight from Baltimore to sunny Orlando, Florida. We decided to use the Disney magical express and Disney transportation. I will talk about the pro's and con's of using this service when you have children with special needs. I loved that I did not have to retrieve our own luggage and it was delivered right to our hotel. I loved that we took a big motor coach to the resort. This was worth the free service. We stayed at the French quarters which I enjoyed. The rooms were a great size since we requested a handicapped accessible room and the resort was quiet.  Everyone was extremely pleasant at our hotel. Since we did not rent a car we had to use Disney transportation. This included water taxi's, monorails, and buses. My least favorite of the transportation were the buses. The kids could not stay in their strollers so we stood in a long line waiting for the arrival of the appropriate bus.  Once the bus arrived the kids had to come out of the strollers. So, we had to carry both kids plus strollers on the bus. The buses were often packed and only had standing room at times. This was the con of the trip. The buses were very difficult to manage with two non walking children. Maybe if Julia had been walking it would have been easier but with two non walkers this was hard. I absolutely loved the boats and monorail system. The kids could stay in their strollers and it made it easier to load them in and out. I think our next trip to Disney we will do one of two things: rent a car or stay at a resort that is closer to magic kingdom to use the monorail only.

I had planned to go to each resort: Magic Kingdom, Epcot, Hollywood Studios, and Animal Kingdom. Unfortunately, we got rained out of Animal Kingdom. I was so disappointed I think the kids would have loved seeing the animals. By far the best place to go was Magic Kingdom for the ages of our kids 4 and 1. Followed by Epcot and then Hollywood Studios. I think in all honesty when I return to Disney next year or the year after we will skip Hollywood Studios and spend two days in Magic Kingdom. The best thing about Hollywood Studios for us was Hayden getting to see Lightning Mcqueen, Mater, Buzz and Woody. I was pleasantly surprised he enjoyed Epcot. We only were able to see half the countries but he enjoyed it.  Note to self do not take your children to Norway! It was scary. We ended up eating in Germany at the Beirgarten. That was a huge hit because of the live entertainment and the food was great.  We also stayed for the Illumination show.  The kids lasted through half the show before they got scared. I think if we watched it again we would watch it from the entrance and not up close so it is not so loud. Magic Kingdom we spent most of our time in Fantasy-land  That is where the most age appropriate rides were and we just did not have time to visit the other sections of Magic Kingdom. We started off our day in Magic Kingdom eating breakfast at Crystal Palace. We loved it! Hayden loved all the characters and the food was fantastic. If you go here for breakfast make sure you try the french toast! It is amazing!! After breakfast we ventured over to ride some rides. Hayden was so excited and I was impressed how well he did. We went on dumbo, Peter Pan, Winnie the Poo, train, Its a small world, the carousel, and Hayden and his daddy drove race cars. I don't think we will venture to Peter Pan again it was dark and scary for the children. I was actually surprised how dark some of the rides were.  I brought glow sticks with us but did not think I needed them on rides. I will remember that for our next trip.

We ended up eating at several character meals. I decide all for breakfast since my family loves breakfast. We ate at Chef Mickey, Crystal Palace and Ohana. I loved each of them in the order I listed them. I think we will try Ohana for dinner next time because I heard dinner is amazing.  Chef Mickey was Hayden's absolute favorite place to eat. Also, a big tip if you want to save time trying to have pictures with the characters this is where to do it. The characters come to your table and you can get pictures with everyone.

I can't emphasize enough how magical this trip was for our family. Just seeing the smile on Hayden's face melted my heart. I honestly do not think he had a better time in his life yet. I also know I want to take my family back there again before Julia turns three just to save on ticket prices again. Disney is so big and there is so much to see that I knew we would not fit it in this trip. I am just happy we were able to get away and forget about our special needs and just have fun. Sometimes that is exactly what your family needs to take a break from doctors, therapies, and school and just enjoy life. I hope to do this more often with our family because sometimes the day to day can become overwhelming.  I failed to mention that even though we were getting away from our day to day with special needs it was apparent many others were doing the same thing. We met so many amazing families in Disney World. I loved that no one looked at my child like something was wrong. I loved that I could talk to another family who got it. It made me feel for a brief moment that our family is not the only family going through struggles. I even found a cute adaptive stroller for Hayden as he gets bigger. One that doesn't look to medical. That was my biggest concern trying to have a somewhat normal adaptive stroller versus a "Hey look at me" stroller. I also am amazed at how nice everyone was during our trip to Disney. Sometimes it makes me feel like I need to move South. Strangers helped us with our strollers, strangers helped me with our kids, and offered their seats on the buses. It was simply nice to have kindness experienced by people you have never met. It reminds me every day that there is kindness out there that is forgotten with the day to day hustle and bustle. I love the south and the hospitality it offered our family! I will end this post with some pictures of our adventure.

Wednesday, September 12, 2012

Three weeks post discharge update

Amazing how quickly time goes by, here we are three weeks post discharge from AI Dupont Hospital for Julia.  We have spent these last three weeks attending physical therapy, occupational therapy, doctor appointments, and having an EEG completed for Julia. Just like her brother she has done amazing. She really did not love the EEG at first,  but I can understand not wanting electrodes and flashing lights on you. Our neurologist called to tell us good news that Julia's EEG is normal, she does not show signs of seizure activity. We are very thankful for these results and we now know we can travel safely on our family vacation to Disney!  If there is anything this family needs is a vacation from the day to day of our normal lives to have fun. I truly think Julia and Hayden will have the best time and I cannot wait to have a week without therapy and doctors appointments.

I know I have written a lot about how difficult it is to balance the various needs of my two children. However, this week at one of our visits to AI on Monday reminded me just when I think we have a difficult road it could always be worse. When Julia, Hayden and I were leaving the hospital Monday we were waiting for valet to return my car. I noticed a couple smiling at my children. I had my huge double stroller, which by the way I will be purchasing my new amazing stroller in the new year. Any way they saw Hayden first and of course Hayden decides to say hello. Hayden loves to talk to everyone and show them his toys he brought for his adventure. The couple asked if there was another child in the stroller I turned and showed them the full stroller so they could see Julia. Again, they smiled  at my two babies.  I realized with the hospital badges they had they were staying at the hospital with their child. I found out from my few minutes of conversation that they had a five month old little boy who had just went in for major surgery. The surgery was going to take a minimum of three hours and that their stay was going to be awhile. I also know they traveled from New Jersey to our hospital in Delaware. I know my story was different, but I wanted to reassure this couple they were in good hands and that the doctors and nurses at this hospital are amazing. I told them about our recent adventure with Julia and about my oldest love Hayden. I wanted to share with them that I understood their sadness and worry despite our roads being very different. It was then I realized ,as my car arrived and I was putting Julia in her car seat that the shuttle arrived for the couple. They walked by and told me thank you and just smiled at my children. I wished them luck and let them know I would be thinking about their son. I know I have had a rough patch from time to time but my children made this couple smile. My children who are undergoing therapy, tests and doctors visits brought joy to a family we just met.  I think of that couple every day and wonder how their son is doing. I hope to see them in our future visits and I hope they have found comfort in just how wonderful this hospital in Delaware is.

I continue to be amazed by Julia and Hayden's strength. I am so proud of how hard they work and their ability to persevere. So, today my post is centered around thanks.

Today I am thankful for:

1. Julia regaining all of her skills
2. Julia learning how to get in and out of a seat unassisted
3. Julia saying mama with a smile
4. Julia having a clean bill of health from a major medical complication
5. Hayden bringing joy into strangers lives
6. Hayden choosing to be independent every day little by little
7. Hayden for playing soccer
8. For both of my children strengths and happiness
9. For my husband's support and love
10. For all the new, old, and future people to enter my life
11. For the continued support and love from family and friends
12. For being able to kiss and hold my children

Thank you for reading and I hope to bring more exciting news from my children.


Thursday, September 6, 2012

Updates Updates Updates

Wow, what a week it has been after a nice long weekend. My life is chaotic to say the least with no end in site for a few weeks. I had a wonderful weekend respite day for myself. I was able to enjoy a day of zip lining and venturing around Washington, DC. Thanks to my hubby for watching the kiddos while I enjoyed a wonderful stress free day of fun. Now, back to reality! The work week started on Tuesday it is nice to be back into a somewhat normal life. Then Wednesday approached and I knew this marked the start of the busy week I have ahead.

Wednesday, was a big day for us it was Julia's first neurology appointment with Dr. Scavina who happens to be big brother Hayden's doctor. Wednesday also marked the day we were going to get Hayden's vestibular testing results.  Well, we ventured to our neurology appointment at AI, little did I know there was going to be a radio-a-thon at the hospital to raise much needed money for the children's hospital. To say it was a madhouse was an understatement, thank goodness for free valet parking! I am beginning to think it is bad that the hospital staff is starting to recognize me. I guess that is what happens when you have been seeing people for four years, they become an extended part of your family. They were surprised to see me there with little Julia. They remember when I was pregnant and how proud Hayden was to become a big brother. Dr. Scavina came in and said your children must think you can handle the world, I said sometimes it is a true test of my strength. Some days I feel successful other days I feel overwhelmed. She discussed with me the recovery time for post viral ataxia and tried to do her very best to reassure me Julia's case is much different than Hayden's.  She also confirmed that Julia does not have hypotonia other than what is caused from the onset of the viral ataxia. However, she did mention Julia is hyper reflexive just like her big brother and mama. Guess being double jointed and flexible comes in handy at times :) We were also fortunate to see the neurologist who treated Julia while she was in the hospital. We really liked her but decided to see Dr. Scavina because she knows our family.  She was very excited to see Julia's progress. After a consult with both neurologist it was determined that Julia should have a baseline EEG completed. Once our neurology appointment was finished Julia and I ventured to the hospital cafe for lunch before our pt session.

Next on the agenda was physical therapy. Julia has been seeing her big brother Hayden's therapist Wendy. Julia loves Wendy and plays extremely well and cooperates for the most part. She is still determined to get what she wants and successfully motor plans how she is going to get it. While Julia was in her pt session I had the opportunity to talk with Faith, one of the pt's who is apart of the vestibular team.  The conclusion of this testing showed Hayden does have a challenge with vestibular ocular reflex.  What this means I am not sure, we will need to see a specialist that can help us figure out vision strategies for Hayden. The team also confirmed Hayden's CP.  This has been brought up before but the doctors were hesitant on providing that diagnosis. After all he has been through I hope everyone can agree this is the final diagnosis. I truly am finished searching for the why's behind Hayden's delays. I just want to focus on the right now. How to help Hayden live an independent life and strategies for him to meet his full potential. I have come to realize Hayden is leading us on his path and only Hayden will show us what he is fully capable of doing. I believe in my heart of hearts this kid is going to do amazing things.  So, our next steps with Hayden are to visit a new opthamologist who specializes in this vision disorder and a cerebral palsy orthopedist.

Today I returned to AI, I feel as though I live there lately. Julia had physical therapy and her EEG today. She did so well in physical therapy. My little lady was cruising! What a relief we are getting all of our skills back. She even decided she wanted to walk with a push toy. She did pretty well and only lost her balance a few times. I think with continued therapy this little girl is going to recover. She has proven she wants to do this and is determined. We had lunch again in the cafe at AI before our EEG. Once again it was a mad house with no where to sit. I am looking around for a seat and some great staff from the cardiology department decided to share the table with Julia and I. She of course won the cardiologist and nurses over with her big smile. I think they could have stayed for hours playing with my sweet girl. After lunch we ventured to have our EEG which was back up in neurology. Of course since I am a frequent flyer of the neurology division the staff asked why I was back again. With a smile I said EEG today. We were taken back fairly quickly however Julia was not digging the electrodes on her head nor the flashing lights. She was extremely exhausted and just wanted to sleep. It broke my heart to see her so sad. Luckily that part last 5-10 minutes until I was able to hold her and she fell asleep laying on me. We got to rest for an hour until the procedure was complete. Finally we went to visit our friend Connor and his mommy while they were staying overnight at AI. I remember all to well how lonely the hospital will be.

Now, we are finally home ready to venture to AI again tomorrow for OT. Boy these kids keep their mama and daddy busy.

Until next time....