I have been on the fence about attending the MPS Family Conference this year. We have yet to attend a conference and I just wasn't sure if I was ready/interested. But a final call email was sent yesterday and I realized that I really wanted to go. I have a few moms who have become such special friends. I really wanted to take advantage of this opportunity to meet them. Another mom is going to come with just her daughter who also has Sanfilippo. They will be our buddies for the weekend. So, I found a great deal on a flight and decided to bring Waverly along with me. It will be a short trip, but one that is going to prove to be quite memorable I am sure. Plus we will be able to spend a day at Disney World again. I am so excited to meet so many families who share a similar story.
Saturday, October 31, 2009
Friday, October 30, 2009
Oliver had his first field trip yesterday. His class went to the same pumpkin patch we took the kids to last week. His teacher wrote me to say just how much fun he had. She was excited because of all the physical therapy practice he had while playing - going up/down stairs, sitting to slide, balancing on a merry-go-round, climbing/stepping through trains and tractors. And of course the dirt pile.
He has been doing so well at school. The teacher says he is very bright and continuing to learn new things. He says (approximates) hi & bye. He is attempting to say 2 boys' names, Jack & Zach. They both come out "ack", but still! He loves circle time and still wants to turn on the music to sing. He also loves cleaning up - he is like his mommy - and rings the bell to signal that it is time to clean up for the day.
They have also started putting him on the potty each morning, so it looks like I am going to begin the process. That was an incredibly stressful ordeal for Waverly. We worked on it for 1.5 years and she never got it. At least my expectations will be low for Oliver, but it will be nice to at least get him used to the toilet.
I am off to Oli's school this morning for his costume parade and party. I hope to hide out a little bit, so I can observe him. I know when he sees me, he will shift his attention. I am really looking forward to seeing him in action.
Tuesday, October 27, 2009
I thought the swine flu may have invaded our home, but it looks like it was just a good old fashioned cold. Oliver's classmate was out with a suspected case and when he woke up with a fever, cough and runny nose yesterday I thought we were going to be out for the count. Thankfully, he was feeling much better today and seems to be on the mend. Hopefully that will last throughout the night and both kids can get back on schedule tomorrow.
In other news, we took the kids to the dentist. Children's has a dental clinic and they are so good with children who have special needs. In fact, one of the dentists shadowed our geneticist a few of our appointments back. She is lovely and was really interested to know how they could better accommodate our children. Fantastic! Much to our surprise, no cavities were found. (Kids with Sanfilippo tend to have major enamel issues, leading to problems with their teeth and gums.) Wavey was a champ, as long as Matt, the dentist and hygienist all sang songs...which they did. Oliver cried the entire time, but calmed down quickly when we left the examination room.
I also had ah "it's the little things" moment. Yesterday, I asked Waverly if she wanted to watch a movie with me while Oliver napped. She looked at me and said "moo-bee". That is the way she used to say movie. I actually started to cry. She just sat there smiling at me. Then later, I was singing the "Mickey Mouse Clubhouse" theme song and she said "meeska, mooska, mickey mouse". She hasn't said that for months. I was thrilled! She was mostly silent today, but I have yesterday.
Saturday, October 24, 2009
Tonight was "Boo at the Zoo" at the National Zoo. We thought this would be a great even for the kids, since walking up steps to doors is getting more difficult for Waverly. What a great event! They had a ton of sponsors handing out not just candy, but lots of delicious and healthy snacks. Plus, we got to see all of the animals. The highlight must have been the front row viewing of the Pandas. And, of course, the costumes.
Below are 3 photos: the first shows Wavey reaching for Oliver's Goofy hat, the second shows her yanking it and Oliver crying, and the third shows them a few extra feet apart.
Below is a family photo...unfortunately we were unable to get the kids to look at the camera.
Thursday, October 22, 2009
I just love this picture. Mackenzie (little girl in the purple shirt) has Sanfilippo. I was able to meet her and her lovely family this past summer. Her family hosts a run every year to benefit the MPS Society. The group of young girls pictured wanted to run in honor of other children with Sanfilippo. Two of the girls ran for Waverly & Oliver. I thought this was so sweet. I just had to share.
I was reminded today just how quickly time is passing by and how much the kids have changed. I am working on getting all of our photos from the last 13 months printed. We have over 2000 (and I deleted quite a bit)! They start when we moved back to the US late last summer. Oliver has grown from baby to little boy. Waverly has changed so much. I spent some time tonight looking back over pictures and remembering. I forget just how drastic the changes are, until I take a moment to compare.
The memories of their diagnosis were brought to light again today. I spoke with a lovely mom who has 2 young children. They are awaiting genetic testing confirmation to see if their kids also have Sanfilippo. It is heartbreaking to know that another family is entering this life. Yet as I spoke with her (she has a wonderful perspective), I was reminded of the reoccurring theme of my blog: "it's the little things". In the midst of my grieving, I celebrate the moments that I have with Waverly & Oliver. Matt and I are creating memories and capturing them with video, pictures, or words. I have been given 2 amazing kids and their impact on the world is immense for their young lives. I am so proud of them. And I am honored to be their mommy.
Yet I can still cry. I can grieve for all of dreams I had for Wavey & Oli. I can be sad.
Monday, October 19, 2009
Oliver answering the question, "Are you strong enough?". (He's showing his muscles.)
We went to our favorite pumpkin patch today. The kids had an early dismissal, so we had the entire afternoon to play. Below are a few of my favorite photos. The kids especially loved the carpet slide. I love the photos of Waverly & Matt coming down the slide together. Her smile is so beautiful. I love seeing that pure joy on her face.
Friday, October 16, 2009
Oliver had a traumatic visit to the ENT this morning. One of his ear tubes (grommets) was loose in his ear canal. This is not a big deal, but he is in need of new ear molds for his hearing aids. The audiologist had to have the tube removed, before she did the molds. They have to wrap him up like a burrito and hold him down - it takes multiple nurses. He HATES it. Oliver does not enjoy doctor visits to begin with and he tends to start whimpering as soon as he realizes where he is. But he have never responded so dramatically to a procedure (except when he had to have the same process done last year to remove wax from his ears.) Matt actually took him to the appointment today and was able to experience Oliver's fury. He said that once Oliver realized they were leaving, he ran clapping to the van.
Wednesday, October 14, 2009
Waverly & Santa
I mentioned in an earlier post that we stayed at a resort called Give Kids The World while on Wavey's wish trip. This place is INCREDIBLE. It was started about 20 years ago by a man with a passion for children with terminal illnesses. He wanted to give them a place to call home while they were on their wish trip. He created this beautiful village for families. Each wish family is given a 2 bedroom/2 bath villa for their stay. The villa has everything one would need on a vacation. The one bathroom has a jacuzzi tub and gigantic walk-in shower with a bathing seat. The property itself has a fantastic playground that is toally handicap accessible, a lovely pool, carousel, train for the kids to ride, putt-putt, and horseback riding. They are also about to open a new pool with a ramp for kids to enter with a water wheelchair and a huge sprinkler park. They also have the most incredible ice cream parlor, with free ice cream from early in the morning until late at night. They have a lovely dining room for breakfast and dinner, with volunteers available to assist with carrying trays and getting refills. There is a snack shop, movie theater, and a "castle of dreams". In the castle they wish kids are able to write their name on a gold star and have it placed on the ceiling, where it will stay forever. Parents can return years later and visit their child's star.
Everything is provided for the wish family while they are staying there - food, activities, park tickets, event tickets. And every day a gift is left for the wish child (and siblings). Waverly received 10 DVDs, toys, stuffed animals, books, cards, bags, etc. (We had to buy an additional piece of luggage to bring home all of her presents!) Each night is themed. On Thursdays, they pretend it is Christmas...complete with Santa Claus handing out gifts, faux snow, cookie decorating and a little holiday parade.
One of my favorite things about GKTW was the feeling I got there. The village has a small staff and hundreds of volunteers, all of whom went out of their way to make us feel welcome. And we were surrounded by other families. Other families that understood what it is like to have a child with special needs. We never felt out of place. We never felt like we stood out. It was a fantastic feeling!
Please take some time to check out the Give Kids The World website. They are an incredible organization of worthy of any donation you are able to give. They are also always looking for volunteers, so if you live in the Orlando area or spend your winters there, check it out. It is bound to be a very rewarding experience. They also have some corporate sponsors who give a lot of money to keep the village going. They are Proctor & Gamble, Disney, Sea World, Universal, Boston Market, Budget, Hasbro, Friendly's, Coca-Cola, Mars, Ecolab, Sony, Walmart, Perkins, etc. I am planning on writing each of them a personal letter thanking them for their generosity. Remember that if you purchase something from these companies, a portion of your money is going to GKTW.
The House of Hearts
Ice Cream Shop
Castle of Miracles
Star Filled Ceiling
Gingerbread House (dining room)
Example of a villa
Tuesday, October 13, 2009
The Make-a-Wish trip was quite emotional for me. When we went to Disney World last year, Matt spent most of the week feeling sad and depressed. This trip was my turn. I couldn't believe we were a MaW family. I took Waverly on Soarin', a great ride that simulates flying around CA sites. I cried through the entire ride, so sad that she was never going to have the opportunity to see so many of those beautiful places. I didn't know how to respond to those people who said things like, "they are going to remember this trip for the rest of their lives". I looked around at all of the other families and I was jealous. I wanted to shake them and remind them just how fortunate they are.
Waverly was different on this trip, too. She was much more catatonic than our previous trips. She didn't smile or giggle very often...really only when meeting the characters. Otherwise she was fairly sedate. I was hoping to see more expression and enjoyment. I was sad to see her reactions fading.
I was able to enjoy the week. I had a wonderful time. But the sadness kept creeping into my heart. I wish things were different.
Monday, October 12, 2009
We had such a fantastic trip. The Make-a-Wish organization put together an amazing week of memories for our family and Give Kids the World (resort for Wish families) was incredible. (I am actually going to write a separate post on just how incredible GKTW was.) The kids both did a beautiful job on the flight down. My folks met us down there for most of the week. We spent all 5 days at Disney World. I had scheduled a few character meals, since I knew that would be one of the highlights for the kids.
We were given a MaW button, plus we had a handicap pass for Waverly. This allowed us move towards the front of the line for the rides and get special seating for shows & parades. The best part was interactions with the characters. We were always taken to the front of the line and given extra time meeting Mickey & friends. It was incredible!! Oliver was super excited, although a bit apprehensive at first. Waverly would run up and knock them over with hugs, if we weren't careful.
The weather was sunny every day, but unbearably hot and humid. We ended up heading to the parks later than usual, just to avoid the noon time sun. We also took lots of a/c breaks in shops, shows and indoor rides. For those of you who know me, I can handle any kind of weather, but I melt in heat...I also get very agitated. I did quite well under the circumstances. But temperatures of 105 with humidity factored in were just too much.
I was able to take a lot of great photos and video, although I also wanted to experience the moments with the kids and not just be the photographer. I hope to put together some video highlights to share with all of you soon.
Here are a few of our favorite moments:
*Post breakfast carousel ride every morning*
*Pooh Bear giving Matt a kiss after meeting the kids*
*Watching the fireworks while on the race cars*
*Being able to ride Dumbo twice in a row*
*The Small World incident of 2009*
*The staff at Animal Kingdom going out of their way to make us feel special*
*Wavey's giggles on Thunder Mountain Railroad*
*Matt taking a huge splash in the face to protect Wavey from getting soaked*
*Watching a beautiful little girl with Down Syndrome participate in the Lion King show*
*Oliver lighting up every time he met a character*
*Matt dancing with Waverly at the Biergarten*
*Riding Dumbo with a very happy Oliver*
*Oliver signing "fish" whenever he saw Nemo*
*Sharing a frozen coke with Waverly*
*Meeting Santa Claus and picking out toys for the kids*
*Waverly meeting Snow White & the Seven Dwarves*
*Oliver playing in the many fountains*
*Wearing our matching purple tees*
Sunday, October 11, 2009
Oliver & I in the limo off to the airport.
Matt & Wavey riding in style.
Oliver meeting Goofy at Give Kids the World.
Oli & Wavey meeting Pluto.
Oliver giving Pluto five.
Waverly looking beautiful.
Oliver on the carousel at GKTW.
Wavey riding with Bear at GKTW.
Oli getting a haircut at the barber shop.
Wavey nuzzling with Piglet.
Oli very excited about hugging Tigger.
Wavey & Tigger.
Wavey dressed for Halloween at magic Kingdom.
Wavey with Snow White & the Seven Dwarves.
Oli enjoying the a/c in the car.
(note: we are parked and waiting for grandparents.)
Oli playing in the Epcot fountains.
Wavey enjoying breakfast.
Wavey and safari Mickey.
Wavey with safari Daisy.
Wavey holding Goofy's hand.
Oliver dancing at Goofy's dance party.
Oliver watching the parade.
A very tired little boy.
A second wind.
Wavey enjoying the fountains.
Oli LOVED the fountains!
Wavey looking beautiful.
Matt & Wavey in the Wish Lounge.
My beautiful babies.