Wednesday, November 26, 2014

Happy Birthday, Wavey Mae!!

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.

Thank YOU!!

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

Wavey's Birthday Eve

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.

Happy Birthday, Matt!


Happiest of birthday wishes to Matt. We are excited to celebrate with him tonight after work. 

Thursday, November 13, 2014

#waveyinspires


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

Waves of Inclusion & Kindness

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

Wavey Inspires

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.

Thank you!!

Changes in Oliver


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

Autumn Update

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

Oh Watson


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

It's Been Awhile . . .

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

Happy Anniversary


16 years married to my best friend. 

One Foot in Front of the Other


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

Back to School


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

Waverly Update

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.

Summer Vacation 2014

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

Parliament Hill

Oliver romping around at the farm 

Enjoying the most beautiful porch

Happy girl 

Happy boy 

 Obligatory family shot in front of famous building

Oliver making friends with a horse 

Stunning farm

Tractor ride with our dear friend 

Breakfast in Montreal

My guys waiting for a brioche 

Oliver exploring Vermont 

Wavey excited to be almost home

Sunday, August 17, 2014

Avoiding

It's been awhile. I have been avoiding the blog. A bit too down to want to write. Tonight my emotions are all bubbling up and it seemed like it was time to put pen to paper (or fingers to keys) and let it out. The blog truly is for me. It is therapeutic not only to write, but also to look back at all we have done and how much life has changed.

Oliver is doing much better. He has settled into his new medication and is calm once again. He has changed during this last bout of regression. He is quieter now - fewer loud shrieks of excitement during his favorite Mickey Mouse episodes. He also paces the house, which I suppose is excellent exercise for our little home body. He has been enjoying summer. One week home and the next at Jill's House for day camp - that has been our routine.



Waverly has had a very difficult few weeks. It began with some irritability, which is unusual for Waverly but we didn't think much of it. Eventually it turned to crying during the day and being unable to settle her. Even at day camp, the staff was having a difficult time engaging her and keeping her content. Then the crying during the night came and she had a few nights were she didn't sleep at night long. She has been restless, agitated and unhappy. For those of you who know Waverly, she is smily and easy going almost all of the time. 

We had appointments last week with some of her specialists and they all seem stumped. They see the changes, but are unable to identify the cause. Thankfully they are unwilling to simply say it is Sanfilippo Syndrome and are working on helping us find a cause. However thus far we are without one. They did prescribe a new medication to calm her. It is effective, but in taking the drug she seems vacant.

We are now without a few of our doctors for the next few weeks. I guess the end of August is a big doctor vacation time. This has left us at a stand still and unsure how we should proceed.

Waverly Mae has lost her spark and we hope it will return.


Tuesday, July 22, 2014

Elefun


We have owned this toy for 8 years. I bought it when Waverly was 3. I thought she would love trying to catch the falling butterflies. I remember her holding the nets, saying "Catch! Catch!" over and over again as I turned on the elephant. The trunk filled with air and eventually a bunch of butterflies would come flying out. I would try to help her move her net in order to catch them, but inevitably it was pure luck if any were caught. She loved watching them flutter to the ground.

It has been years since we have opened the box. For some reason, in all of our moves and purging of unused toys, I cannot bring myself to getting rid of this game. I tried last week. I cleaned out the closet in our spare bedroom and found Elefun on the top shelf. I put it in the giveaway pile, but eventually put it back on that top shelf. Maybe another time . . .

Friday, July 18, 2014

Summer Update

I cannot believe we are already one month into summer. We have had a lovely time thus far. It is so nice to have a break from school (truly a break from getting up early and driving in 66 traffic). We were able to take a short trip to Ohio to visit Matt's family which was a lot of fun. The kids are super travelers. They have also attended a week of day camp at Jill's House, with a few more on the calendar throughout the summer. Below is a picture of Ollie showing off the sun visor he made.


Waverly is doing well. Her walking is deteriorating and she can no longer stand on her own. She needs full adult support to walk and can hardly use her walker anymore. She has also been struggling with edema in her legs and feet. She had her annual cardiology appointment and thankfully everything looks fine. The swelling is simply a result of inactivity. So we are using pressure socks, elevating her legs, changing positions and walking with support.

Oliver is still having a difficult time. The new medication, which is a pain med, seems to be helping. He still has bouts of whining/crying, however it is much less dramatic than it has been. He is pacing a lot more - wandering the house in ways he never has before. I have noticed that if I can strap him up in one of his chairs after dinner, he calms down. It is almost like his body simply cannot stop moving, unless we force him to sit.

Thursday, July 17, 2014

Refresh

The blog has finally been updated. I have been waiting for some great pictures of the kids and my friend, Megan, came through for us. She lives in Ohio, so while there for the 4th of July holiday we made a point to schedule a photo shoot with her. I have adored her pictures on Facebook over the years and I knew she would be a wonderful fit for our family. We had a lovely evening at the Wegerzyn Gardens. The kids were amazing (which given Ollie's recent behavior was a miracle). I am beyond excited to have new pictures of the kids. What a wonderful opportunity to capture our family in the moment.

If any our of Dayton area friends are interested in a fantastic photographer, please consider our friend.  Click HERE for her website.