It was a beautiful day here in DC, so we decided to soak up some sunshine at our favorite playground. It is a fully accessible playground for children with special needs. They have ramps to access all of the equipment, supportive swings, wheelchair swings, sensory play things and a carousel (that is still closed for winter, much to Oliver's disappointment). As you can tell from the photos, Waverly & Oliver had a wonderful time. Bring on spring!!!
Sunday, February 27, 2011
Saturday, February 26, 2011
It has been a difficult day for the Sanfilippo community. We lost another beautiful little girl to this horrible disease tonight. Steffany was a fighter - so strong - and passed away with her family surrounding her. Another little girl, Sarah, has entered her final days. Please keep these families in your thoughts and prayers.
As you can imagine, this news hits our family especially hard. We are heartbroken for our friends and terrified for Waverly & Oliver's future. I am going to go give the kids an extra snuggle and kiss as they sleep tonight. Please do the same with your babies.
Friday, February 25, 2011
Sanfilippo is weighing me down tonight. Like a wave, the reality of what we are facing has come over me and I am finding it difficult to breathe. I just read about a fellow MPS mom whose daughter is in her final days. It is so painful to read her story, knowing it will one day be mine. I cannot bear the thought of watching my babies succumb to this horrible disease. Losing not one, but two children to Sanfilippo. Going through the unimaginable, only to know I will go through it all over again.
I am not a mother who has given up hope. I am a mother wresting with reality - wondering if a treatment is going to arrive in time to help Waverly & Oliver.
Thursday, February 24, 2011
Our Disney Photo Pass cd arrived yesterday and there were some adorable photos. Here are a few of my favorites. I can't wait to go back with the kids in November!!
Waverly really enjoyed meeting the princesses.
I love this photo, because Wavey is so excited to see Mickey Mouse. I love her feet kicking out.
Getting a *kiss* from Mickey.
And a *kiss* from Donald, too.
Oliver's 2 favorites characters - his friends Tigger and Pooh.
A great big Pooh hug.
Oliver was fascinated with Pooh's belly. I think it reminded him of his own.
Waverly was equally excited to see Pooh.
Snuggling with Pooh.
We had dinner at Chef Mickey's. I love Wavey's huge smile. Oliver was not feeling well this night at all.
Wednesday, February 23, 2011
Monday, February 21, 2011
Last night my entire family gathered around the TV together to watch "Undercover Boss". My step-dad, Al, was a featured employee of Mack Trucks. He did such an incredible training the CEO in a gracious and kind manner. He also had an opportunity to sit down with Denny Slagle (the CEO) and share Waverly & Oliver's story. Denny was obviously touched - he is also a Grandpa. Al's love for the kids was evident to every single person who watched the show. Waverly & Oliver's photos were shown a few times and Al was able to tell people a little about Sanfilippo Syndrome (MPS III). He raising awareness on a national level!!
Mack Trucks donated $5000 to the MPS Society, which will be used for Sanfilippo research. (They is currently no treatment for this horrible disease.) Mack is also sending my parents, Matt, Waverly, Oliver and I to Disney World in the fall for a week long vacation!
Thanks to Mack Trucks and Denny Slagle for your generosity!!!
You can watch Al's episode HERE. He is shown about 20 minutes in and then again at the end of the show.
Sunday, February 20, 2011
Tune in to "Undercover Boss" tonight on CBS. My step-dad, Al, will be one of the employees. He talks about Waverly & Oliver and Sanfilippo Syndrome. He is raising awareness on a national level!!
Thursday, February 17, 2011
When I dropped Waverly off at school on Friday, I met her teacher and aide in the hallway. I was filling them in on Waverly's PT & OT session, when the 1st graders came out of their classroom for lunch. This particular class is the one Wavey joins for PE and music. One of the little boys was super excited to see Waverly. He loves to give her hugs. I also heard him say that he likes to give her hugs and make her laugh. A few of the other kids also greeted Waverly, before getting into a line to head downstairs.
It was such a beautiful moment and a reminder why inclusion is SO important not only for the children with special needs, but also for the mainstream kids. I wish I knew that little boy's mom. I would give her a HUGE hug and tell her that she is doing an amazing job raising her little boy.
This morning I had an intake meeting for the kids to participate in a respite program at a local church. The church's pastor has a daughter with special needs. That inspired him to create a ministry to reach out to families in the community who also have children with special needs. Their program, Access Ministry, is nationally recognized and they are a leader in getting other churches to create similar programs. It is truly incredible!! The offer respite for families 2 Friday nights and 2 Saturdays each month. The volunteers are all background checked and trained and there is a nurse on duty at all times. There are sensory rooms, moon bounces, a playground, gym, movie area, craft area, play rooms, wagons & scooters, and so much more. I was blown away!! The kids will have a wonderful time playing and Matt & I can actually have a date night once a month. Sign me up!!!
You can read more about this amazing ministry HERE.
Friday, February 11, 2011
I love my Sanfilippo family. After almost 3 years of being in this exclusive circle, I have come to heavily rely on some of the other mothers who truly understand what I am going through. I have found a few moms whom I can call or email when I have had a terrible day, when I need advice, when I need to vent or when I need someone to pick me up. They are treasures.
Being a part of this group is difficult though. New families enter. As I hear their stories or read of their pain, I am immediately taken back to those first few months post diagnosis. As I have grown attached to other families, I see the changes in their children. I hurt right along with them as the disease progresses and new challenges are faced. And I have also watched other families anticipate the end of their child's life and grieve with their loss.
Another family's precious little girl is nearing the end of her life. Both she and her brother have Sanfilippo. Their story mimics ours in so many ways. I cannot help but look ahead a few years and know that I will soon be in those shoes.
I feel, at times, that I am in a waiting line; surrounded by other Sanfilippo families. All of us waiting for our moment to lose our child. Some families choose to avoid all contact with other families. I understand that perspective. I needed to reach out to other families. The day after Waverly was diagnosed, I was on the phone with other moms.
I know that there are movements toward finding a cure for Sanfilippo. We won the $250k grant to help fund gene therapy research. But in all actuality, it is most likely too late for my children. They will probably not benefit from the research. They will be too old and the disease too advanced to enter the human trials. This will not stop me from fighting for a cure. I want to help other families not have to endure this pain.
My heart aches today though. I hate knowing that another mother is cradling her dying baby girl. I cannot even begin to imagine how much she is hurting right now.
I am scared of the day when it is my turn. My turn to cradle Waverly & Oliver. To know I have mere moments left with them.
Please keep Steffany and her family in your thoughts and prayers.
Wednesday, February 9, 2011
I finally had one child return to school today. Oliver went to preschool this morning, for the first time in 2 weeks. He shed a few tears when I put him on the bus, but otherwise he did quite well. It is always difficult to transition back into the school routine for him.
Waverly was home....again. I took her back to our pediatrician this morning. We left with antibiotics in hand. Phew!! We were there on Monday and saw a different doctor. (He clearly does not understand Sanfilippo and seemed almost frightened by the kids. Not exactly sure of his choice in careers?) He wanted to "give it a few days". We did and she is still sick. Hopefully she will be back to school tomorrow or Friday.
Things are slowly returning to normal.
Monday, February 7, 2011
I am still trying to come to terms with the fact that Oliver's trip is over. It went by so quickly. We had a wonderful week.
We stayed at Give Kids the World and it was once again an amazing experience. The entire resort (village) was created to help families feel comfortable away from home, to leave the medical stuff behind, and for the kids to enjoy themselves. Our favorite part is the volunteers. They are wonderful!!
We flew in on Sunday. Oliver loved the limo ride to the airport - he was obviously thrilled. We had a easy time flying. The kids did great and I happened to sit by a lovely woman whose nephew has Angelman's Syndrome. We were able to "special needs" talk and make connections. Once we checked into GKTW, we drove over to a friend's home. Susan and I met over a year ago at an MPS conference. Her daughter has Sanfilippo. They invited us over for dinner and a visit. It was lovely to connect with another family. There is something so incredibly special about spending time with a family who *understands*.
The next day we headed to the Magic Kingdom. The weather was gorgeous the entire week, so Oliver was even able to strip down to his diaper and enjoy the fountains. He was a bit confused by the characters at first, but by the end of the week he was a pro. He didn't like hugging them as much as he liked holding their hands. Both of the kids enjoyed the rides and parades. At the evening Electrical Light parade, Wavey did have a seizure. We think the strobe lights may have caused it.
Tuesday we went to Animal Kingdom. Breakfast with Donald Duck. Oliver loved the safari jeep ride. I don't think he noticed the animals, but he loved riding in the jeep. We spent the afternoon back at GKTW in the swimming pool. Oliver is our water baby and I don't think he would have ever wanted to get out of their beautiful pool.
Wednesday was EPCOT. Both of the kids rode everything - even Soarin' and Test Track. More fountain play in the sunny afternoon. That evening, we left early to take Oliver to the doctor. He had been sick all week with a cold, but that day his breathing became very wheezy. The urgent care prescribed some antibiotics and we were hoping that would be the end of his illness.
Thursday we went to Universal with our friend Susan and her daughter. They have a Barney show that Waverly loved! Oliver played at the play area, focusing on the ball pit. We also ventured into the Harry Potter area - very cool and Butter Beer was awesome. We took the kids to a character dinner with Mickey and his friends. Oliver was still very under the weather and his breathing was getting worse. Matt ended up taking him to a pediatric urgent care late that night, where they decided to have us use a nebulizer on him to clear his airway. Poor Oliver. He was so sick.
We weren't sure about hitting the parks Friday, but we hated to miss out on our last day. We went back to the Magic Kingdom (in matching shirts, because everyone thought it was Waverly's wish - we were hoping the tees would clear that up). We took it slow, riding a few favorite rides and simply enjoying the beautiful day. Oliver was still not acting at all like himself.
We had a little time at GKTW on Saturday, so the kids went horseback riding and played at the village. While we weren't ready to see our vacation end, we were excited to get Oliver home. The kids did great, once again, on the plane. Oliver was excited to climb back into the limo and was thrilled to get home to all of his toys.
It was a wonderful trip! We made some wonderful memories as a family. I wish that Oliver would have been healthy for the week, so he could have fully enjoyed his Make-a-Wish trip. However, he was a trooper and did great.
Sunday, February 6, 2011
Oliver smiling at EPCOT
Oliver & Matt riding Dumbo
Oli was a bit confused by the characters at first. Here he is meeting Piglet.
He really liked their noses.
Waverly & Oliver waiting for the parade - ears on
I love that smile!!
Oliver is our water baby. He loved all of the fountains and sprinklers.
Waverly was captivated by Cinderella.
Exploring the park.
Meeting Pluto at Give Kids the World
Pluto was awesome!!
We were also able to meet Barney & Friends at Universal.
Oliver loved the ball pit.
We had dinner with the characters at Chef Mickey's.
Riding the carousel in the Magic Kingdom
Oliver showing off our family tees and his Mickey ears.
Saturday, February 5, 2011
I know that most of you are well aware, but I wanted to let you know that Team Sanfilippo won the $250,000 grant from Pepsi. We ended the month in 1st place!!! The official results will be posted on 2/23 HERE.
Thanks to all of you who voted and shared the information with your friends. We couldn't have done it without your help.