My handsome little boy is turning 8 years old tomorrow. He is staying with my mom for a few days whilst I tend to Waverly's needs. This will be the first time I am not with him for his birthday, which makes me so very sad. This beautiful old soul made a dramatic entrance. And his first few weeks on the earth were a fight, but he was strong and taught me that I can be strong. He is a kind soul who is slow to warm up, but once he gets comfortable he is always ready to hold your hand. He is Mickey Mouse Clubhouse's biggest fan. I worried that I could never love another child as much as I loved Waverly....and then I met Oliver.
Monday, December 29, 2014
Sunday, December 28, 2014
We have had a very rough Christmas holiday and it is not over yet. Oliver got sick with the flu the Friday before Christmas. Two days later Waverly got it. And the following day it was Matt's turn. All 3 sick, with only me to care for them. Thankfully, my immune system kicked it into high gear and I was able to avoid getting ill. Oliver and Matt were very sick, but within a few days they were simply tired with a bad cough. Poor Waverly just couldn't fight it. We ended up in the ER twice. Her fever was 104.5 and we could not get it to go down (cool bath, outside, cold compresses, meds, etc.). And we are always worried about her aspirating on mucus and ending up with pneumonia. Along with the congestion, fever, weakness, and fussiness, she has also had epic nosebleeds that have taken over an hour to contain. On our second ER visit, they discovered she also had a terrible ear infection. Finally - 8 days later - she is fever free. She still sounds terrible. Lots of congestion to work through, but I hope she may finally be on the mend.
Here she is during our second ER visit. She was so tired and weak, she couldn't hold her head up.
My worry is that her little body won't be able to fully recover from this. I hope she can bounce back, but I fear she may be weakened by this illness long term. We have never seen her so sick and it was scary.
Wednesday, December 24, 2014
A few weeks ago Waverly & Oliver's principal called to let us know that he had nominated us for United's Fantasy Flight and we got a spot. We had to be at Dulles airport early on a Saturday morning for a flight to the North Pole.
It was an amazing experience. United offers this special flight once a year around Christmas. Children in hospice or those with a terminal illness are flown to the North Pole (i.e. a terminal decorated to look like the North Pole) to meet Santa. The plane was totally decorated and the flight attendants came around with tons of candy for the kids. There were wearing costumes and sang. And for about 20 minutes we flew around over DC (ahem or using magic elf dust to the NP).
Once we landed we were greeted by tons of people in costumes. There was lots of food, crafts, games. And of course a visit to Santa where the kids were given a gigantic bag full of toys. The kids had a fantastic time. And Matt & I were certainly overwhelmed by the love and support shown to our family and others within our community. What a special day it was for us.
Thanks to Mr C and his wife for making this day possible!!
Friday, December 5, 2014
This week is Inclusive Schools Weeks and last year I started a week long celebration of inclusion at the kids' elementary school. I am the Special Education rep on the PTA and quite honestly I had no idea how to fill that role. I did a little research and found out about this national program to celebrate and promote inclusion. I thought this was the perfect event for our school. Thankfully we have supportive administrators and teachers who helped make the week possible.
Each day the kids are wearing a color to bring awareness to a particular diagnosis. Blue for Angelman Syndrome & Down Syndrome. Green for Cerebral Palsy. Purple for Sanfilippo Syndrome. Black & White for rare diseases. And Rainbow colors for the autistic spectrum. Each day I have seen almost every child and staff member in the corresponding color. It has been a beautiful sight to see.
Wearing a color is a small step, but I am hopeful that families are having conversations and teachers are speaking with their students about why this week is important for everyone. And I hope that the staff is encouraged to make further steps to promote inclusion within their classrooms. It benefits ALL students.
"The vision is, first, that the school will be a community, a place full of adults and youngsters who care about, look after, and root for one another and who work together for the good of the whole, in times of need and times of celebrations. Every member of a community holds some responsibility for the welfare of every other and for the welfare of the community as a whole."
Wednesday, November 26, 2014
We weren't sure how we were going to celebrate Waverly's birthday. We hadn't planned a party and the weather was fairly chilly for a day downtown or at the zoo. We opted to drive to a cute Virginia town we had heard about. Quaint - good shopping - great food. Sounds perfect for us! I spent a few minutes googling places to stop and we came up with a great itinerary.
First stop was coffee and pasteries at a fabulous little bakery called "Red Truck". It was fantastic and Oliver was especially excited for his red truck sugar cookie...and some of my coffee cake
We then went to Culpepper for shopping for food. We had some fantastic BBQ (Matt's favorite) and explored the downtown.
No birthday is complete without a sweet treat. We stopped a MooThru ice cream for shakes. Oliver's favorite part of the day.
Wavey Mae had a great time with her family. Our little 11 year old had a great day celebrating.
Thanks to all of you who participated in our *Wavey Inspires* campaign. We had over 1400 people commit to perform an act of kindness in Waverly's honor. We are still getting messages from people telling us about what they did for a family with family specials in their community. It made Waverly's birthday incredibly special and joyful.
Friday, November 14, 2014
We just put Waverly to bed. Her last night as a 10 year old. Another year has passed.
Tomorrow is going to be a difficult day. A fun day of celebrating, but emotionally rough.
Our now 11 year old will wake up in her bed, after a night of being fed by a pump via her g-tube. We will unhook her tube, give her some meds and change her diaper. We will dress her, brush her teeth, wash her face. Support her body as we shuffle into the family room for some cartoons with her brother. We will reposition her, so her body doesn't stiffen. Stretch her legs and massage her feet. More diaper changes, feeding tube hook up for lunch. Trips in her wheelchair and time in her stander. Snuggles on the couch. She will hold a favorite toy made for babies.
Not exactly what we had envisioned for our 11 year old daughter.
However we will laugh together. We will sing "Happy Birthday" over and over again, because it always makes her smile. We will read "Click, Clack, Moo" and watch "Cinderella". We will light candles on a cake and relish in the chocolate icing for her. We will hold hands. We will kiss her on her cheeks. We will hold onto the moment and celebrate the 11 amazing years we have had with her.
She is pure joy.
I will cry as I say goodnight tomorrow. I will watch old videos and weep when I hear her sweet voice I so desperately want to hear just one more time.
And I will hope that we will be able to celebrate 12 years together in 365 more days.
Thursday, November 13, 2014
Waverly turns 11 years old in just 2 days. Our *Waves of Inclusion & Kindness* campaign is going strong. We have had almost 900 people commit to reaching out to a family of a child with special needs in their community. We hope to cross our 1000 people goal by her birthday. Please join us and help bring some joy to a bittersweet day.
Wednesday, November 12, 2014
Our Wavey Inspires page is up and going. We have had almost 800 people like our page and pledge to do an act of kindness to a family with a child with special needs in their community. What a fantastic way to celebrate Wavey turning 11 years old on Saturday. Please consider participating in our mission. If you are on Facebook like our page, Wavey Inspires, and let us know how you plan on showing kindness to a family in your life.
Monday, November 10, 2014
Waverly turns 11 years old on November 15th. As you can imagine, birthday are bittersweet in our family. When Waverly & Oliver were diagnosed with Sanfilippo Syndrome 6.5 years ago, we were told their life span would be anywhere from 10-16 years. We have no idea how much time we have left with them, but we focus on today. Celebrating the moment at hand and making memories along the way.
In an effort to celebrate her birthday, we are asking for your help. We would like to encourage you and your family to reach out to a family in your area who has a child with special needs. Introduce yourself, have your child make them a card, invite them out for coffee or a playdate, give them a gift card. We want to see "Waves of Inclusion" throughout the world, in honor of our inspiring little girl.
Please *like* our Facebook page - "Wavey Inspires". Share our idea and please share how you blessed a family in your life in honor of Waverly's birthday.
This little boy warms my heart. He is such a gentle soul, always waiting to take my hand for a walk. Over the past few weeks, we have noticed some changes in his behavior. He is very structured and follows routines well. However, when we head out to the car each morning to go to school, he is beginning to wander around. He just walks around the yard until I come take his hand.
He is also beginning to have some trouble while eating. He is overstuffing - leading to choking and gagging. So meal time has changed. We now present him with just a few bites of food at a time and then prompt him to drink. We have been through this before with Waverly, but I hate seeing these changes in him. Especially his eating pattern change. If you know Oliver, you know how much he loves to eat. Anything altering that behavior saddens me.
Wednesday, October 29, 2014
Watson is now stitches and cone free. He was quite a trooper the past few weeks and is happy to finally be able to take short walks and venture around the house a bit more. He still has to take it slow, but it looks like he will make a full recovery.
Waverly & Oliver are both doing well. No changes or updates. Just enjoying this most glorious time of year together - enjoying the walks outside in the crisp air, baking a ton of yummy treats and getting ready to celebrate holidays & birthdays.
Monday, October 20, 2014
It's always something. And if it isn't the kids, it our dog. Watson broke his foot last weekend. He was chasing a squirrel in the backyard and then yelped. After a very expensive surgery on Monday, he seems to be on the mend. He just finished his first week wearing the cone of shame, with at least one week to go. Thankfully he is putting his full weight on his foot and we hope he will make a full recovery. This crazy dog brings us a lot of joy and we are so thankful he is recovering.
Friday, October 10, 2014
We have had a very busy few weeks, leading to me being quite quiet on the blog. Waverly wasn't feeling well and developed a terrible cough that took some time to go away. This meant I had the joy of keeping her home from school. We took walks and watched movies - we had a great time together.
I was also able enjoy a few weekend mornings cuddling with Oliver, while he watched Mickey Mouse Clubhouse in our bed. It is one of my favorite rituals and I love beginning a weekend slowly with this little guy.
I was also able to take a girls trip to Costa Rica for 5 days with two of my very best friends. Matt took some vacation days to cover things at home. And I was able to take a real break and rest with dear friends. Lots of coffee, wine and conversation.
Monday, September 15, 2014
Oliver has been doing so well the past few weeks. He is in second grade and seems excited about going to school each day. He is walking independently, eating well, and giving better eye contact. I am so proud of him and thankful that he can still walk next to me while I push Waverly's wheelchair. He is my hand holder and will almost always wait for me with his little hand extended waiting for me to grab hold. His strong little frame and obedient spirit provides us the freedom to be out and about with Waverly. Once his walking declines, our ability to move around easily will be diminished - there are no double wheelchairs. So lately I have been cherishing the moments. Holding hands, pushing a wheelchair and putting one foot in front of the other. Together.
Wednesday, September 3, 2014
Yesterday was the first day of school and we tried to take the obligatory picture without much success. Oliver just wanted to walk in the yard. Waverly was sleepy and would not give me a smile. This picture actually makes me quite sad. I looked back over the past few years and they have changed so much - especially Waverly. Hoping she can get her spark back soon and we can have a redo with smiles and open eyes.
Monday, September 1, 2014
We weren't sure if we could go on summer vacation this year because of Waverly being unwell. After much consideration, we decided to just go for it. We didn't want to regret making memories with the kids.
We were very fortunate to get in to see her neurologist a few days before we were scheduled to leave. It was a miracle of timing with someone canceling the moment before I called to try to get in. He listened to my concerns and was willing to try my idea (based on the advice from other parents who have kids with Sanfilippo).
We held off beginning the new medication, hoping we could start it upon our return. Unfortunately about halfway through vacation, her symptoms worsened. She was so upset - crying and banging her head on her wheelchair. We decided to give it a go and give her the new medication. It took about 2 days before we saw an improvement, however she was much happier for the last few days of our trip. I wouldn't say the new medication is a miracle drug yet, but it has potential to keep her comfortable and happy. We even got a few smiles and giggles.
Hoping we have brought her some relief.
We loaded up the minivan last week for an end of summer road trip. We love hitting the open road. And given all of the supplies the kids need when we travel, a van is required. We opted for another Canada holiday and once again The Great White North did not disappoint. Here are a few favorite photos:
A Canadian delicacy - I recommend the maple
Oliver romping around at the farm
Enjoying the most beautiful porch
Obligatory family shot in front of famous building
Oliver making friends with a horse
Tractor ride with our dear friend
Breakfast in Montreal
My guys waiting for a brioche
Oliver exploring Vermont
Wavey excited to be almost home