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. 

Wednesday, July 2, 2014

Sad Oliver

I am sad for this little boy.


Oliver has been having a very difficult few months. Each afternoon he begins to cry and whimper for hours. It lasts all afternoon, into the evening until bedtime. He then will go to bed just fine and sleeps all night. We had him checked out by our pediatrician and geneticist to rule out any obvious causes. He doesn't appear to be in any pain. The crying definitely looks anxiety driven or simply neurological regression.

We have been down this road before with Waverly. It was six months of crying and fussing - highly unusual for Waverly. We met with every specialist she has for blood draws, x-rays, and MRIs. We never found a cause, but we finally met with a Pain & Palliative Care doctor. He couldn't find the source of the crying, but was willing to begin treating it. In her case, it seemed like pain. After a small dose of a pain medication, she returned to her normal self.

We returned to Pain & Palliative Care and are working to find what medication may be able to bring him some comfort. Thus far his behavior seems much more like anxiety rather than pain. We are on our second medication and hopefully we will find one that helps him.

It is an awful feeling to watch your child cry for hours and be unable to provide him relief.

Monday, June 30, 2014

Shopping with Waverly


This girl. She is amazing. I have thoroughly enjoyed the first week of summer break. Having the kids at home is a treat and I am so thankful I am able to spend this time with them. 

We braved Wegmans last week for a quick shopping trip. They just bought this cool card pictured above. It is called "Caroline's Cart" and it provides a secure seat for a child with special needs in the cart. I was able to push the cart with Waverly sitting looking at me, while Oliver walked beside us. Definitely not easy, but doable. I love seeing progress being made concerning accessibility.

Wednesday, June 25, 2014

Last Day of School


Happy Last Day of School!!! We are now the very proud parents of a 2nd grader and a 5th grader. How has the time flown by so quickly?! Thanks to all of the staff at VES for another successful year. See you all in the fall.

My Little Alien


Waverly's 4th grade classmates put on a musical production of the 50 states last week. Parents and grandparents were there to see it. It was totally adorable and featured aliens coming to earth and learning about the different parts of the country. Of course, my favorite part of the entire show was seeing Waverly on stage. She wore her little alien hat and seemed to enjoy being on stage with her peers. One very special little girl stood by her the entire time and would fix her hat, hold her hands and keep her happy.

I wanted to weep. I wanted to cry tears of gratitude for a school community who included Waverly. For special classmates who always show compassion and kindness.

And I wanted to weep for the "if only". If only things were different for Wavey. If Sanfilippo was never uttered, what would she have been doing on that stage. I already know that she had a beautiful little voice. (Don't believe me - click here.) 

I try not to allow myself to think about what could have been very often. It isn't a healthy way to live and I find myself wallowing if I stay there too long. So I focus on the now, the moment.

Wavey did a great job as a very friendly and smiley little alien.

Friday, June 20, 2014

Opportunity to Help

As many of you know, Sanfilippo Syndrome is a rare disease. This means very little pharmaceutical money goes into research, given that our patient population is so small. (Not a large opportunity to make enough money to cover the research costs.) And federal funding for rare diseases has been drastically cut over the years. Therefore, it is up to families to come together to raise money.

There is some exciting research underway at Nationwide Children's Hospital. A few doctors there have been working for years on Sanfilippo Syndrome. They have done the mouse models, received approvals and are currently in the midst of a Natural History Study. Family run non-profits have funded them thus far. Moving into the human clinical trial phase is a huge undertaking and we need money to move it forward.

So Sanfilippo families are coming together with one goal: fund the clinical trial.

Please consider donating via our Crowd Rise page. 


Thank you!!

Thursday, June 12, 2014

Cape May 2014

We took a much needed trip to Cape May last week for a start of summer vacation. The town is relatively empty, everything is open and the weather was perfect. Plus it is restaurant week, so there are lots of specials going on for dinners out. We had a fantastic trip full of walks on the promenade, shopping in town, and playing in the surf. Waverly wasn't at all bothered by the sand this year and was content to sit under the umbrella with toys or take walks in the beach wheelchair. Oliver loves the water and enjoyed walking in the waves as much as possible.

The past few weeks have been incredibly busy, so this escape was perfectly timed. We made some lovely memories, released some stress and returned refreshed to finish out the school year and start summer break.













Sunday, June 1, 2014

Jill's House Gala

Matt & I were honored to attend the Jill's House Gala on Friday night. They showed the film I posted below and asked us to speak. It was a magical night at the Ritz Carlton hosted by Wayne & Catherine Reynolds with a private show by Martina McBride. There were hundreds of people in attendance with over $1million dollars raised that night alone. Simply incredible!! We were able to sit with people who have given/raised millions of dollars for Jill's House. What an opportunity to personally thank them - as a parent who has been so positively impacted by such a special place.




I was a bit nervous throughout the night and didn't eat very much. So after the event a few of us went around the corner to a diner for some food. I heard a few patrons wonder aloud how we look way too old for prom.



Below is a copy of what I said after the showed the film about our family and Jill's House.

* * * * * * * * * * * * * * * * * * *

The day Waverly received her diagnosis was such a dark day. Life took a sharp turn towards the unknown. I remember driving back to my parent’s home. Waverly was in the backseat. Ever the beautiful singer with impeccable timing, she began singing “If you’re happy and you know clap your hands”. The irony of that moment. A little 4 year old girl was just dealt a terrible blow. Yet in her innocence, she was completely unaware. She was genuinely happy.

We have all changed in 6 years since we first heard the words Sanfilippo Syndrome. 

Matt resigned the Foreign Service as he felt he could no longer in good conscience commit to being worldwide available. I have made the choice to stay home to take care of the kids’ many needs—in one calendar year that might mean as many as 300 separate medical and therapy appointments. We moved far out of the city where we could find a one story home. We spent an inordinate amount of money, not on the car of our dreams, but for a minivan with a wheelchair ramp.

Dreams of living overseas and exposing the kids to various cultures have gone to the wayside. Our dream now is simple. Celebrate the small things, make memories daily. Our world has shrunk and we move through life at a different pace than most. We know what playgrounds have a handicap accessible swing. We know what restaurants can accommodate a wheelchair easily.

And we know Jill’s House. A haven. A place created specifically for kids like Waverly & Oliver. A place special children can call their own. Where every detail was created with them in mind. No short cuts or hand me downs. No need for explanations. No need to forgo an event because it is inaccessible. Just a beautiful space for them to safely explore and enjoy with wonderful people. 

Wavey & Ollie now get to experience some quintessential aspects of childhood, like sleepovers and camp. They are forming relationships with other children, staff and volunteers. They have celebrated birthdays with friends, lounged with their peers to watch a movie together before bed. Giggled on the swings and splashed in the pool. A taste of a typical life.

And we have the opportunity to miss them. It is bittersweet, missing them. When the kids are at Jill’s House we cannot help but think about the future. The quietness of the house, no feeding pump beeps or shrieks of excitement for Mickey Mouse Clubhouse. What will our lives look like when they are no longer here with us.

As I said in the video, my sorrow is deeper now. I know them more. I love
them more. I will miss them more.

But for now, we focus on the present. The two beautiful gifts we have been given. And the incredible impact their short lives are having on the world around them.

As the cornerstone of Jill’s House promises all who enter - “Come to me all you who are weary and burdened and I will give you rest”. The parents will have rest. They can rest assured their children are well cared for.

Lon & Brenda, thank you for creating something beautiful from your pain. Jill has changed our lives and the lives of so many in our community. 

And thanks to all of you for attending this magical event and for listening to our family’s story. Thank you for seeing the needs of families who so often feel over looked and for providing the resources for them to find moments of rest, renewal and grace.

Friday, May 30, 2014

The Gift of Rest





Earlier this month we had a film crew from Citygate Films at our home filming our day. They put together this beautiful short film to showcase the importance of Jill's House in the lives of families who have children with special needs. Grab some tissues, take a seat and enjoy our story.

Tuesday, May 27, 2014

Viva Vienna!!

Spring time. The chance to get outside, soak up the sun and make some memories. We went to one of our favorite events - Viva Vienna! The kids had a ball listening to the Banjo Man and eating ice cream. Waverly was especially smiley, as captured in this beautiful picture.





Thursday, May 22, 2014

My Ollie-Bear

Oliver. Sweet Ollie is having a such a difficult time these last few weeks. We have seen this pattern of behavior before. The whimpers and whines begin late in the day before bed and slowly they begin to take over the entire day. Yesterday I had to pick him up from school because he was upset and they thought he was ill. Fortunately we had an appointment with his allergist this morning and she gave him a good looking over. All is well. Unfortunately this is just Sanfilippo rearing its ugly head and reminding me that it is going to begin impacting Oliver in a more significant way.

Anyone who meets Ollie is well aware that he has severe developmental delays. However, in my eyes, compared to Waverly, he is my healthy little boy. He can walk on his own, maneuver a playground, he comes when I call his name, feeds himself using a straw cup & spoon. He is my independent one. And I rely on his independence greatly. His ability to walk allows me to take the kids out by myself. Once he is confined to a wheelchair, our world is going to shrink even more drastically than it already is. There are no double wheelchairs. Without an extra hand, we will have to stay home.

It is so painful to watch my son cry, so upset by *something* and I am helpless to comfort him. These anxiety episodes are very common in children with Sanfilippo. Now to see if we can find something that can bring him some kind of relief. I have a call in to a few of our doctors and some other moms have provided some excellent advice. 

For now I snuggle him when he allows me the honor and hope for this phase to pass.

Wednesday, May 21, 2014

Chubby Feet Can Be Calming


I love when Waverly & Oliver find comfort in one another and connect. And I love their feet. Oliver has been having a difficult few weeks. He has been crying/whining/fussing a lot during the evening hours and now is it beginning to creep into his days. He seems to get this way when his allergies and asthma are at their worst. He was super weepy after school and all of a sudden he calmed down. When I looked over, he had climbed up next to Wavey and was rubbing his feet on hers. It was a simple gesture of affection and I think he found comfort in his big sister. Thankful for her camping presence for him tonight.

MPS Awareness Day 2014

Waverly & Oliver's school acknowledged MPS Awareness Day last week in such a beautiful way. Not only did the kids wear purple, but each class helped make a purple paper chain link that stretched throughout the school. Such a simple gesture that conveyed unity and support. I loved it! At the end of the day, I hosted a Purple Lemonade Stand for the kids and their parents. Just a little show of gratitude for the support they showed our family.





Thursday, May 15, 2014

Wear Your Purple


I hope you are joining us in wearing purple for MPS Awareness Day today. We struggle with this day because it's a little depressing to have to acknowledge that raising awareness is about the best we can do against Sanfilippo Syndrome. On a good day, it's the first step towards finding a cure. On others, it's just a last ditch, futile effort to try to do something instead of nothing. However you're feeling, please join us by donning some purple and hoping for a cure.

Tuesday, May 13, 2014

Waverly Takes Manhattan

We had a fantastic Saturday in NYC with Waverly this past weekend. Matt is a huge Dahl fan, so for Father's Day I got him tickets to take Waverly to see "Matilda" on Broadway. My parents kept Oliver for the day, so we had a special day just with her. We spent the morning wandering Central Park and sipping coffees on a park bench. Matt & Wavey took in the matinee while I caught up with some old friends for a few hours. We then had a perfectly lovely dinner at Gramercy Tavern. 

Here are a few of my favorite pictures (notice Wavey's new glasses).





Purple Lemonade Stands


Some friends are hosting purple lemonade stands to help us raise awareness and funds for Sanfilippo research. If you are interested in joining the movement, here a flyer to use for your event.

Wear Purple


MPS Awareness Day is Thursday May 15th. Please consider wearing something purple to help us raise awareness. Thanks!!!