Monday, April 14, 2014

Big Sister & Little Brother


These two.

I have been thinking so much about these two. About how Sanfilippo affects them. I tend to focus on how my life has been impacted, forgetting this is actually happening to them.

Waverly is doing well. Her little joints are continuing to stiffen. Each morning we stretch her arms and legs, careful not to just jostle her out of bed. Patience. Her little feet shuffle and her joints creak. She has trouble maneuvering and just wants to plant her feet firmly on the ground to feel secure. When she walks her knees are beginning to lock - a sign that she is feeling unsteady and doing whatever is in her power to stay upright. I wonder how much pain she is in, knowing her pain tolerance is significantly higher than mine.

Oliver is still moving. His little feet are turning in a bit more and he isn't quite as fast as he used to be. His biggest change is confusion. When he goes out the front door he doesn't walk over to the van anymore. He wanders the front yard, until we call him over. He is forgetting his routine and requires a lot more help to keep him on task.

Typically they parallel play - each in their own world next to one another. I have found them to be closer lately. In a matter of minutes Oliver left his love seat and climbed up (and almost over) Waverly. He loves to put his feet on those he loves, so this was a gesture of adoration for his big sis. Except for the pain of getting kicked and the weight of his legs on her, I know she loves being close with her little brother.

Go Nats!!!!







We took the kids to see the Nationals play opening weekend. It was a fantastic game with a big win. Baseball games have become a very fun activity for our family and we hope to take in a bunch more games this season.

Wednesday, April 2, 2014

PJ Party in the Moon Bounce


Waverly & Oliver were at Jill's House last week for a school night overnight. They sent me this picture of the kids in pjs for a quick moon bounce before bed. I think it is utterly adorable. (I especially love when they braid Wavey's hair.) We are so grateful to have Jill's House.

Monday, March 24, 2014

Colonial Waverly


Waverly's 4th grade class had Colonial Day on Friday. All of the kids were dressed up and participated in events. They made candles, leather journals, beaded necklaces, played period games. It was a super fun event and I thought Wavey looked adorable.

Oliver's Changes

Oliver has had a rough month. My poor little boy is going through a lot of changes at the hands of Sanfilippo Syndrome continuing to strengthen its grip. A few weeks ago I received a call from Ollie's teacher saying that he couldn't bear any weight on his legs. He had a few collapses and they ended up putting him in the school's wheelchair to get him back to the classroom. I sped over to school and he would not stand. His legs just gave out. 

I took him home and strapped him into his activity chair (feeding chair on wheels with a tray). I had to keep him immobilized, because he kept trying to get up only to fall. I didn't want to risk an injury. Then the giggles began. Two hours of constant giggles - at first happy sounded and then just so out of control they were alarming.

 Is this a new normal and he will never walk again (this does happen in some kids with Sanfilippo - they just wake up one day and no longer walk). Or is there something wrong that we can address. So began many phone calls to his pediatrician, geneticist, neurologist and orthopedist. 

As we started putting the pieces together, we realized he could very well be experiencing seizure activity. Atonic (drop) and Gelastic (laughing) are two types of seizures that could explain his strange behavior.

By the next morning, he was back to his usual self walking without any issues.

We met with our geneticist and a new neurologist who specializes in working with children who have genetic disorders. After showing them some videos of Oliver and explaining the behavior (and subsequent episodes), we all feel fairly confident that he is experiencing seizures. We are going to do a 24 hour EEG in a few weeks just to see if they can capture an episode and see what part of the brain is being affected. We may end up starting him on seizure medications.

Thursday, March 6, 2014

Pictures With Friends

My very dear friend, Kamarah, came to visit us over the summer with her family. She is an extremely talented photographer and has a knack of capturing special moments. Here are a few of my favorites.






Jill's House Video

Matt and I were interviewed by Jill's House as part of their Sponsor a Child Campaign. They put together this lovely video to explain the importance of a place like Jill's House for families who have children with special needs. I especially love the footage of the Waverly & Oliver at JH. You can view the video on You Tube HERE.

If you feel so lead, please consider making a donation to this worthwhile organization. It has made a huge difference for our family and many within our community. You gave find more information about donating at www.jillshouse.org

Friday, February 28, 2014

Finished Shower


They installed our glass shower doors this week and the kids' bathroom is complete. It looks beautiful!! Thank you Ryan Reph Remodeling.

Now we just need their rolling shower chair to arrive. We have one on order, however the FDA isn't allowing the import of the chair until at least July. We are trying to get an exemption, although that doesn't seem likely. 

Rare Disease Day


Today is World Rare Disease Day!!!

In the US, any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983. There are nearly 7000 rare diseases affecting nearly 30 million Americans. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions make medical research more difficult.

Alone we are rare. Together we are strong.

Tuesday, February 25, 2014

Refocusing

A friend of mine who had her first child last year mentioned she felt like she was losing herself in motherhood. Her identity became so wrapped up in being a mom, she was neglecting the other parts of herself. I have heard this sentiment before, but I must finally be ready to understand. I get it. Totally and completely. 

Since the kids were diagnosed life has changed dramatically for our family. Matt changed his career, we moved to the DC area, and I threw myself into caring for Waverly & Oliver. However in the process of caring for them, I have neglected me. I used to feel selfish for feeling this way, but I am realizing that if I care for myself I am better prepared to care for the kids.

So begins my journey of refocusing, not to the detriment of the kids, but to the betterment of me. I need to take care of my body - eat better and exercise - to be healthy and strong. I need to take a class or find a hobby, taking some time each week to learn and grow. The most difficult challenge will be developing friendships and connections. I often feel so lonely, connecting with people via phone calls, texts and Facebook. I need local relationships.

I am beginning to realize that when Waverly & Oliver pass away, I need to have some support and structure built into my life to carry me through.

*ISO compassionate women who will accept a loyal friend with lots of baggage and a very complicated story*

Monday, February 24, 2014

Bathroom Reveal

It's finished!!! And it is beautiful. We are over the moon excited with the kids' new accessible bathroom. We installed a 36" pocket door to save space and easily navigate a rolling shower chair into the bathroom, grab bars by the toilet and in the shower, zero lip entry into the tiled shower to roll the kids right in for bathing. The custom glass doors will installed within the next week or 2 to finish the project.

I cannot thank our contractors - Ryan Reph Remodeling - enough for creating such a perfect space.







Thursday, February 6, 2014

Life Lesson Learned

I'm not apologizing for my kids anymore.

Oliver had his 7 year appointment today with our pediatrician. I adore her, but the nurses can be iffy. Today's nurse obviously hadn't read the huge note on the front of his chart briefly explaining Sanfilippo Syndrome. She was irritated that Oliver would not remain still for blood pressure and pulse - I warned her. And she got a bit huffy when Oliver was unable to stand on the scale for more than a few seconds. Typically I would apologize for his behavior and let the person know developmentally he is only 18-24 months old. As I started to utter these words once again I realized that there is no need to begin my sentence with "I'm sorry" or "I apologize". My children have done nothing wrong.

My life is complicated enough. To move through it worried that Waverly's wheelchair may take up too much space, Oliver may get a bit noisy, people may judge me as a terrible mother for allowing 'Mickey Mouse Clubhouse' to play on an endless loop. I have to let it go. No more "I'm sorry". I have to move away from those words. Leave them behind.

Friday, January 31, 2014

Goodbye January

I am currently staring at three pieces of medical equipment in our family room. There is another in our van, one at school, two in our guest room and four in bedrooms. There is a part of me that is so grateful for these items. We are incredibly fortunate to have insurance that recognizes the benefit of standers and walkers, wheelchairs and Sleep Safe beds. I am thankful we are in the midst of a bathroom remodel so the kids can bathe safely in a rolling shower chair. And I love having a wheelchair van that keeps the kids safe and secure, while saving my back from constant lifting.

This has been an exhausting month both physically and emotionally. So much change occurring in such a short amount of time. As the changes arrive and we adjust to our new normal (again), reality settles in and a new phase arrives.

Wednesday, January 29, 2014

Waverly's New Wheelchair


It took so much time and energy to get this piece of equipment, but it has finally arrived. Yesterday we were able to pick up Waverly's new wheelchair. It is a Quickie Iris Tilt. You may not be able to tell from this picture, but some of the frame is purple, while the rest is black and gray. That huge padded seat is memory foam, making for a plush ride. It sits straight up as shown and can also tilt back to al most laying position for when/if she falls asleep. There is a great tray so she can play with toys and books easily as she rolls around.

It is most definitely not going to be confused as a pediatric stroller. We have entered a new phase. There is no hiding Sanfilippo Syndrome with this ride. However, it is going to serve her well. It allows us the freedom to add on items as she continues to decline that will accommodate the changes.

Once again life looks different for our family. We are adapting to new equipment. Adjusting to our new normal. 

Now to find the perfect fashionable bag for her chair...

Bathroom Remodel

Another big change for us is a complete bathroom remodel for the kids. Right now their bathroom is down to the studs and the concrete floor is all busted up. Gone is this:


In its place will be a large walk in (roll in) curbless tiled shower with glass doors. The toilet will be moved, vanity moved, new flooring, new lighting and fixtures. We are also installing a pocket door to save space and allow our rolling shower chair to maneuver more easily. It is going to be gorgeous!! And even better than that it is going to be much more functional for the kids' needs. We will not have to lift the kids into and out of a bathtub anymore. Hooray for another back saving update!!

Never Pass Up A Carousel

We took advantage of a lovely day to head into the city for a walk on the National Mall. As usual, we couldn't pass up a ride on the carousel. The picture doesn't convey it, but Oliver was all smiles and giggles as he went around.


Our Van Has Arrived




Typically January is a slow month. The winter blue set in after the holidays and we count down the days until spring arrives. Not this year. We have been so incredibly busy, which is made obvious by my lack of blog entries recently.

In big news our new handicap accessible van was delivered a few weeks ago. The bottom picture gives the clearest idea of how the van works. The ramp (folded up at the back of the van) unfolds from the trunk. A wheelchair them rolls up the ramp and sits between the 2 captain chairs in what is typically the middle row of a minivan. A second wheelchair can sit behind it. Wavey can then ride in her wheelchair, eliminating the back breaking transfer into and out of her wheelchair. Hooray!! (Her new wheelchair wasn't here in time, so Wavey is sitting in the regular seat still.)

I never thought I would be so excited about a wheelchair accessible vehicle, but I am beyond thrilled. This is a life change for our family.

Friday, January 10, 2014

Happy 7th Birthday, Oliver!!


Oliver is 7 years old. Time is flying by much too quickly. We had a little birthday party for him over the holidays with my family. He loves cake and ice cream, so we opted for a delicious ice cream cake from Carvel. We say "Happy Birthday" - twice - because Waverly loves that song so much. Oliver just wanted to eat.

My sweet boy is changing. I am often so focused on Waverly's changes because they are new and unknown. With Oliver we are aware of what will happen next, should he follow his sister's trajectory. However every so often I see the differences. He is still using a spoon to eat, but he is becoming less effective. He doesn't dig the spoon in anymore, so most of the time he is bringing it empty to his mouth. We give him time in order to maintain the skill and the motor coordination, but then we take over so he can actually get some food. He is crawling over to furniture now in order to pull himself up to a standing position. And his legs are growing increasingly stiff, so his walking is a bit more uncoordinated.

He has the sweetest of spirits. Waverly has always been social and quick to warm up to any new environment. She longs for personal contact and lights up well people speak to her. Oliver is much more subdued. He is our home body. Each time we walk through our front door he squeals and runs around, happy to be home. He is happiest watching 'Mickey Mouse Clubhouse" all day long while running around the house holding his favorite Mickey Mouse footballs. Life is simple for him. Eating bring ultimate pleasure and we try to allow him his favorites as often as possible given he will soon no longer be able to eat by mouth. He is sometimes misunderstood. He doesn't give great eye contact or interact with his peers. Yet he is quick to hold my hand, loves to snuggle on the couch, and quickly falls asleep with a head scratch and back rub. I love him completely.

Happy 7th Birthday, Oliver!!

Wednesday, January 1, 2014

Frozen

I took Waverly to see "Frozen". It is the first movie we have seen in a theatre together for about 2 years. She loved it!! She sat quietly in her wheelchair the entire time. She was a bit startled by the volume at the beginning, but grew more comfortable once the movie started. She cracked up - usually at the totally inappropriate times when the characters were in danger or there was a heartfelt moment on the screen. She has always done that. It was a great few hours of normalcy and mother/daughter bonding. We have to do it again soon.

Monday, December 30, 2013

New Traditions





Christmas has always been a difficult time for me. I tend to be overly emotional about it and focus on the *what ifs*. The past few years we have made a point to go on vacation over the holidays. It's a chance to escape and make memories. We weren't able to do that this year. So instead of trying to force traditional Christmas on the kids, we opted to do our own thing.

Matt had to work Christmas Eve day, so the kids met him downtown after work. We walked over to the White House to see the National Christmas Tree. It was freezing cold and so windy, so it was a quick walk. Then we went to Founding Farmers - one of our favorite restaurants - for dinner. We had a great table by the window in the corner. Perfect spot for Waverly and Oliver loved all of the food.

Christmas morning was casual. I made breakfast and had a few up wrapped toys and books in a basket for the kids to discover. No wrapping paper or bows, no Santa or stockings. I used to get so depressed that Waverly & Oliver didn't show excitement for those things. This year I adapted to them. And it was so much easier. Lesson learned.