Waverly's new wheelchair was delivered yesterday afternoon. We have been waiting many long months for its arrival. So far, I love it. Her other chair was much too involved given her needs and way too heavy. It was also too small for her. This chair has lots of room for growth. It is cushy, making for a more comfortable ride. It also has more of a stroller look - basket underneath, adjustable handle. It is also tilted about 30 degrees, which keeps Waverly back in her seat. The sides keep her from leaning. We had to go with purple, given purple is the color for MPS. I think she looks pretty happy and cozy sitting in it as we waited for the school bus this morning.
Wednesday, November 30, 2011
We had a wonderful time in PA for Thanksgiving. We have learned that attempting to leave DC on the day before Thanksgiving is next to impossible. It took us almost 8 hours last year!! (It should take a little over 3 hours.) We decided to leave Thursday morning and arrived in record time. My sister and her family were down for the weekend as well. We had a wonderful time with family, eating a great big turkey meal. The weather was unusually warm, so we spent a lot of time outside taking walks and playing ball in the yard. The kids love being with their cousins and grandparents. It was a great break.
(It is blog catch up day.)
Last Monday, Waverly spent the night at Jill's House. They are working to partner with local schools to provide week night respite for families. There are a few children at Waverly's school who are registered with JH, so Monday night was a trial run for her school. It was a bit of a last minute thing, so only a handful of kids were there. Wavey once again had a wonderful time. She had a lot of attention from the staff, went swimming, watched a movie, played in the gym. She was all smiles when we dropped her off and all smiles when I picked her up the next morning. I am so incredibly thankful to Jill's House for the work they do for families in the community. And we are so blessed to have them close by - a definite plus to remaining in the DC area.
While Waverly was at JH, Matt & I took Oliver out for dinner to Chipotle. Oliver loves their chips. I loved being out with the men in my life.
Sunday, November 20, 2011
I have written often about missing Waverly's voice. She used to love to chat, sing songs and recite her favorite books & nursery rhymes. She had a beautiful voice. Oliver never really spoke. He babbled a lot as a baby, but it never developed into language. Aside from a few simple approximations, I have never heard him utter a word. However at the end of each "Mickey Mouse Clubhouse" episode, he used to belt out his version of the word "house" to close out the show. His hands would be thrown out to the side, head tipped back and a loud song/scream would bellow out. I used to love watching MMC with him, simply because I loved to hear the enthusiasm in his voice. Sadly, he no longer does it. I noticed the change a few months ago, but today it hit me just how much I miss that sound.
We are entering the phase with Oliver where the changes begin. Sanfilippo reveals itself more and more, slowing changing the behaviors of my sweet babies. Last week his teachers told me he was falling randomly in the classroom - not tripping or throwing himself down in anger, but just legs giving out. His hands are in his mouth more, trying to meet the intense desire to chew. All signs of Sanfilippo beginning to take over.
I have watched the changes in Waverly. I knew they were inevitable in Oliver. Nothing could prepare me for them and they are most definitely not easier the second time around.
Saturday, November 19, 2011
It was very quiet Friday morning. Too quiet. I came out to find that Oliver got into the kitchen (I forgot to close the gate). He found a 1 pound bag of M&Ms, somehow opened them and was chowing down. M&Ms were all over the living room and candy coated chocolate was dripping down his face. He began to feverishly shove the candy in his mouth when he saw me. I quickly snapped this photo before cleaning up the mess. He is such a little stinker!!
Friday afternoon, I was able to attend his preschool Thanksgiving Feast. All of the parents were invited for lunch and asked to bring in a favorite food. Oliver was thrilled to eat fresh fruit and pizza - his two favorite foods. He wore his little feather headband in honor of the special day. I had so much fun seeing him among his classmates and with his teachers. He is such a sweet little boy.
Friday, November 18, 2011
Waverly had another VFSS (swallow study) completed on Wednesday morning. We went to Fairfax Inova this time, instead of Children's. The fact that we didn't have to battle morning rush hour traffic or the terrible parking garage at CNMC were huge incentives to the location change. As many of you know, kids somehow do so much better/look healthier when you are actually sitting in the doctor's office. I don't know how she did it, but she didn't do a few of the behaviors we have seen her do at home that caused so much concern. They didn't see any evidence of aspiration, which was great news. She is allowing liquid to fall down her throat, before she actually swallows. And the safe guards we all have in place to prevent aspiration are weakened. Her oral habits are confused. She not longer has the ability to control the use of her tongue in a coordinated manner. The one piece of solid food she was given (a barium covered Cheerio) was swallowed immediately - no chewing.
The recommended we continue the pureed diet, avoiding all foods that require chewing. We do not have to thicken her liquids, since she didn't show any improvement with a thickener added.
I spoke with her SLP, who has been amazing. She has many helpful suggestions for helping Waverly continue to eat/drink orally. She is also going to recommend a dietician for Waverly. She has lost 5 pounds in the last 6 weeks, so we need to bulk up her calorie intake safely.
Thankfully, these are all things we can manage. As we enter into cold/flu season, the fear of illness is strong. We want to keep her eating safely and avoid aspiration, which can lead to pneumonia.
Thursday, November 17, 2011
Over the past few days, I have taken some time to reflect on our trip. It was such a special week. In the midst of vacation my emotions remained in the background. And then the final day, as I left the Magic Kingdom with Waverly, I felt the sadness creep in. As we walked back to the hotel to catch a bus to the airport, I cried. Unlike most families who lament the loss of youth in their children, I long to stop time to keep the devastation of Sanfilippo at bay. I know that if/when we return to Disney World, Waverly & Oliver will most likely be much more effected by the disease. I cried because I can't freeze time and and stop the impact Sanfilippo has on the kids.
There were a few moments during our trip that will remain in my heart forever. The excitement of rounding the curve to Camp Minnie-Mickey and seeing all of the characters waiting there to welcome Waverly & Oliver was something I will never forget. The cast of "Nemo" singing "Happy Birthday" to Waverly, inducing smiles and giggles from her, will be a favorite birthday memory. And watching the women at the Boutique so sweetly put Waverly's hair up with the tiara was especially sweet. It was a taste of watching my daughter get ready for her prom or wedding day. She sat so beautifully, looking at her princess book and listening to princess songs. And when she was done, I could tell she felt beautiful. She would grab the sides of her dress and hold them up, smiling as I told her just how pretty she was.
I am so grateful to Mack Trucks and Disney for arranging the most incredible trip for our family. It was by far our favorite vacation with the kids.
Wednesday, November 16, 2011
Our final days were spent doing our favorite things. It was such a great trip and we were definitely not ready to see it end. It was a wonderful escape from reality and we made some marvelous memories with Waverly & Oliver.
Oliver hugging Pooh
Waverly with her best bud, Minnie
The kids and I on the Tea Cups
Waverly & Oliver waiting to board Dumbo
Matt and Oliver about to fly
All of us on the carousel
Thursday was spent all over Disney World. We started our morning at Epcot with a princess breakfast. Neither of the kids were too enthused - they were both hungry and were much more excited about the croissants than meeting the princesses. We then monorailed it over to the Magic Kingdom. Disney had arranged for Oliver to get made over to look like a pirate and for Waverly to visit the Bibbity Bobbity Boutique to get a Cinderella makeover. Matt and I weren't sure how the kids would do, but we at least wanted to give it a try. I am so glad we did! Oliver actually enjoyed the attention and made an adorable little pirate. Waverly was given the royal treatment at Cinderella's castle and looked beautiful. The staff did an amazing job and kept her happy, which is a lot given how much she detests having her hair touched. She made a gorgeous Cinderella. That night we visited with some friends of ours who live in Orlando. They have 2 daughters, their oldest has Sanfilippo. It is always a treat to see them when we are in Orlando.
In front of the Epcot fountain
Waverly getting her hair done
She did such a great job while they worked on her hair
They gave her a book to read and one of the workers came over to sing to her
Jennifer putting on the finishing touches
Cinderella in front of her castle
Argh!!! Pirate Oliver
Wednesday was spent at Hollywood Studios. Waverly went to a lot of the shows and parades. Oliver spent much of the day running around the park and exploring the grounds. He was still afraid of loud sounds and the dark. The guys wore their Mack t-shirts. I had them made to thank Mack Trucks for such an incredible trip.
Here is Oliver meeting Handy Manny
Waverly & Daddy
Oliver & Matt meeting Lightning and Mater
Oliver loves "Cars", so he was very excited to meet them
Tuesday was a special day. We were able to sleep in and relax in the morning. My mom and I went shopping. The kids went to the pool with Grandpa and Daddy. Oliver was thrilled to be in the water. We then headed back to the Magic Kingdom. They had arranged for the kids to have a private Meet& Greet with Minnie Mouse, Mickey Mouse, Cinderella, Prince Charming and the Fairy Godmother. All of Waverly's favorites were there and once again she went straight for Minnie Mouse. The Fairy Godmother was lovely and so kind to the kids. Afterwards, we were led to a special seating area for the parade. We had lunch at Crystal Palace with the Pooh characters and later that night we attended Mickey's Very Merry Christmas Party - complete with snow on Main Street and hot cocoa. The special night time Christmas parade was a real treat and we have front row seats for it. It truly was a magical day!!
Oliver playing in the spray park
Waverly & Oliver splashing in the water
All aboard the choo-choo train
Oliver taking Grandma for a spin
Waverly "kissing" Minnie Mouse
Our family with the characters
Daddy trying to show Oliver he doesn't need to be afraid
Waverly & Pooh
Waverly getting a kiss from Pooh
Oliver hugging Pluto
Oliver is getting a little more comfortable with the characters
Waverly adores Pluto
Waverly is all smiles
Our family on Main Street USA
I love her smile!!
Waverly & I in front of the castle
Waiting for the parade to begin
A beautiful kiss from the Fairy Godmother
We spent my birthday at Animal Kingdom. It has become our favorite park at Disney World. On our last few visits, the cast members there was especially kind and considerate to our family. We started the day with breakfast at Tusker House with Donald Duck. Waverly loved meeting the characters....Oliver was once again a bit overwhelmed with everything and ran away from them.
Disney was made aware of our family's vacation and the special circumstances ("Undercover Boss" and Sanfilippo). They contacted us to let us know that they wanted to sprinkle some "extra pixie dust" on our trip to make it even more magical. The management of Animal Kingdom went above and beyond to make it an amazing day. After breakfast, a manager asked us if we would like to open Camp Minnie-Mickey. They walked our family in, before anyone else was allowed back there. As we arrived, a bunch of characters were there waiting to greet us. They also arranged to have a Disney photographer there to capture the moment. The kids had their own special meet & greet with the characters and we raised the flag to open the Camp. It was by far the best memory of the trip. Waverly saw Minnie Mouse and took off right to her. She spent the next 15 minutes walking around with her, holding hands and giving her hugs. The person in the Minnie costume was incredible!!! We were then given VIP seats to the Lion King and Nemo shows, with the special opportunity to meet the cast members after each show. The Nemo cast was especially incredible. They sang "Happy Birthday" to Matt, Waverly & I and they gave such love to the kids. We had reserved seats for the parade and every character came over to greet Waverly during the parade. (Sadly, Oliver was also afraid of the noisy parade and missed it.)
Waverly & Donald Duck
Our family with Donald (Oliver's favorite character)
Waverly getting a kiss from Mickey
The characters waiting for us at Camp Minnie-Mickey
Holding the flag about to be raised
A scared Oliver finding comfort on Daddy's shoulders
Waverly running to meet Minnie
Our family with Minnie
Hugs for Baloo
A very giggly Waverly excited to see Pluto
Oliver giving hugs to Brer Bear
Waverly & Grandma at the Lion King show
Grandpa impersonating a warthog for the show
Waverly & I walking around the stage as part of the Lion King
Our family with the Lion King cast
Oliver loved the safari - his favorite thing about AK
Our family with the cast of Nemo
Waverly with the girls who played Nemo and Dorie - they were lovely
Holding hands before the parade
Pretty girl waiting for the parade to begin
Waverly meeting Chip
Waverly meeting Brer Rabbit
Oliver on the bus back to the resort - his other favorite "ride"
Oliver running away from Donald in fear