Exploring Holland

Offer Submitted

2012-02-02T14:32:00.001-05:00

Our offer was officially submitted this morning to the sellers. We are awaiting their response, hoping they accept the terms and we can move into our new house in about 30 days. The sellers' realtor thinks we should have a response sometime tonight or tomorrow.

I woke up this morning feeling so confident with our decision to back out of the Vienna house. And this new house is going to be an even more perfect fit for our family. I hope to share positive news with all of you soon.

Not Meant To Be

2012-02-01T21:46:00.001-05:00

I was hoping for no major issues at the home inspection. Unfortunately, my wish did not come true. The foundation was cracked in 2 spots and the basement had a significant amount of mold. Given the amount of mold and the fact that the basement was where our family room was, we just could not risk it. Waverly & Oliver both have compromised immune systems and allergies. The mold would most definitely negatively effect their health. And given the cracks in the foundation and the poor drainage, the mold will likely return. Matt and I made the difficult, yet very clear decision to back out of the sale.

Before the devastation could hit, we headed out with our realtor to see some other properties. We love the town of Vienna, but we simply cannot afford a property on one income. And most of the small ramblers are being gobbled up by developers in order to build huge homes. We decided to open up the parameters and look farther away from the city.

We found a few properties that offered main floor bedrooms and bathrooms. The first one we saw was awful and made me think I was never going to find a home. The second home was a winner!! It is larger than the Vienna house, with total main floor living. 4 bedrooms and 2 bathrooms and a lovely back yard. It also has a garage. Best part is the house is cheaper than the Vienna house!! And it is NOT a short sale!!

We are putting in an offer tonight, hoping the sellers will accept and we can move in quickly.

The commute is going to be longer for Matt. And the biggest change is going to be schools. The new house is in the same district, however they will have to switch to a new elementary school. Their current school has been a wonderful fit. And they have known the kids for 3 years. They remember Waverly before a wheelchair became her mode of transportation. They remember when Oliver loved to complete puzzles and stack blocks. I worry that new teachers won't understand the painful journey they have been on. They won't grasp who they used to be and all they could accomplish. This is the most difficult aspect of the move. I am worried about starting over again with new teachers, therapists and aides. My hope is that our good fortune will follow us to a new neighborhood and the school will once again provide a loving and safe environment for my babies.

It has been a difficult day. We had been waiting 9 months on the Vienna house. Patiently waiting for the approval letters. And then with a matter of moments we had to give up what we thought would be our home for years to come. I surprised myself by not crying. I think I was in shock. I also think I knew it simply wasn't meant to be and I had to move forward. Thankfully, we found another house that will fit our family quite well. And if this house isn't meant to be, we will keep searching until we find it. I know it is out there somewhere.

And We Are Off!

2012-01-31T17:53:00.003-05:00

Yesterday was a whirlwind of activity. As soon as we heard the good news about the house, there was so much to do. I spoke with a painter and carpet installer about some things we need to have done at the house. We are also arranging estimates for the wheelchair ramp to be added to the front of the house.

The home inspection is going to be completed tomorrow morning. Matt is taking off so we can both learn as much as possible about the property. We are hoping for no major issues. With it being a short sale, there is no negotiating on anything that comes up in inspection.

WE GOT THE LETTER!!!!!

2012-01-30T07:06:00.003-05:00

Very early this morning we received word that the first bank's approval letter has been received. Both approval letters are in hand and we are ready to close on the house. We are already working with our realtor to schedule inspection and we had already begun to get the loan officially in place. Hopefully we will be closing within the next 30 days!!!

This has been an incredibly long process (9 months!), however we felt this house offered everything we need to accommodate our family and the kids' needs.

We would never be in a position to buy this home without the help of my college roomies, Kamarah & Michele. Right after Waverly & Oliver were diagnosed they asked me what they could do to help our family. In a list of worries, affording a home in the very expensive housing market of Northern Virginia stuck out to them and they wanted to get us a home. A few years later, thanks to them and everyone who donated to "A Hundred for a Home", we are in the final stretch. Thank you all for making this happen.

Please pray, send positive thoughts and energy our way, as we get through this last step. Closing on a home is rarely easy and we have a lot to get in place before we can officially call it our home. Thank you!!

Waverly's Weekend Adventure

2012-01-29T23:03:00.001-05:00

Waverly was at Jill's House this weekend. As usual, she was thrilled to arrive and all smiles as we entered the door Friday evening. We saw some of our favorite childcare specialists and nurses at check-in. Wavey was whisked away for a weekend of fun. Friday night is fairly low key for the kids. Bags are unpacked, night time routines are followed and the kids settle into their rooms for the night. Saturday is filled with activities - time in the gym, out on the playground, in the pool, movie time in the pod, music & art. They also had a visit from some sea creatures and Waverly was able to touch a starfish. Sundays are filled with much of the same activities, keeping her busy and happy until pick up time in the evening. They told us she especially enjoyed the swing and playing on the ipad with a friend. They also said when they told her she was going to see Oliver she started cracking up.

We are always counting down the hours until we are able to pick her up. Tonight was no exception. Lots of smiles and giggles all around. We are so thankful to Jill's House for providing us with some much needed respite. For allowing us to make some special memories with Oliver. And for giving Waverly a weekend of fun.

Oliver's Day at the Zoo

2012-01-29T22:32:00.000-05:00

Oliver had Matt and I all to himself this weekend. It is always fun to spend some quality time just with him. He is still an excellent little walker and loves nothing more than being outside (and watching movies). Saturday was beautiful. We started the morning meeting some friends for a delicious pancake brunch. Oliver and I shared a huge apple pancake. We then headed to the National Zoo for the afternoon. We opted to leave his stroller/wheelchair in the car and see how far he could walk. For anyone familiar with the National Zoo, you understand the daunting task of walking that gigantic hill. We had a ball!! Oliver walked from the bottom of the hill to the top and across Connecticut Ave for some Starbucks, then back down again. Oliver doesn't show much interest in the animals, however he loves the benches and curbs. Go figure!

Oh Oliver!

2012-01-27T09:30:00.003-05:00

Oh Oliver.

My adorable little boy loves Dora books. He enjoys watching Dora occasionally, but he is obsessed with Dora books. Fortunately, Oliver's teacher has stocked her Book Look area with some of his favorites. He had an exceptionally good day at school this week. No pulling out his hearing aids, participated in circle time. Miss Nina snapped some pictures of him "reading".

I am incredibly proud of him. He is transitioning from me to his teachers without tears and almost seems excited to be at school. He enjoys going on walks and it helps to get some energy out before sitting down to do a task he isn't thrilled about (art, OT). Thankfully, his teachers accommodate him and he talks mini walks around the school a few times each day.

Surgery Scheduled

2012-01-25T13:50:00.001-05:00

I spoke with Waverly's ENT this week and we have tentatively scheduled her surgery for the end of March. Wavey's submandibular salivary glands will be removed, via 2 incisions on her neck. After speaking with our specialists and other parents, we think this is the best decision. It is a big surgery, but it should improve her quality of life overall. I am incredibly grateful to our doctors. We have assembled a team around our children who actually want to treat symptoms. Instead of waving everything off to Sanfilippo, the doctors realize that giving Waverly & Oliver the best quality of life for as long as possible must be priority.

Waiting

2012-01-25T13:44:00.001-05:00

Another week has passed and still no news on the house. I should really have learned by now that each time the bank says "7-10 business days" it is simply a way to keep us off of their backs for 2 weeks. That being said, I still think they have to make a decision soon. It has been over 8 months!

The stress of waiting is beginning to wear on both Matt and I. We simply want an answer so we can move forward in some way. We have spent the past week cleaning closets and drawers - anything to help the moving process go a bit more smoothly. I have been visiting carpet stores and looking at paint samples, trying to make some decisions so we will be ready to proceed if we get the house.

Waverly & the Puddle of Drool

2012-01-19T16:29:00.000-05:00

I took Waverly to Children's National last Friday to meet with her ENT. He is one of our favorite doctors and squeezed us into his busy schedule after I emailed him with my concern. Waverly has been waking up most mornings in a huge puddle of drool (12-24 inches wide typically). Given her lowering muscle tone and inability to shift her body weight in bed, I have been worried about her choking or aspirating on all of the saliva. He shared that worry with me. He thinks that excising (removing) some of her salivary ducts will help limit the saliva production, without overly drying her mouth.

It is a big surgery, he estimates about 3 hours. There are always additional risks with anesthesia given her Sanfilippo diagnosis. However, she has never had any adverse reactions. The benefits of the surgery could mean a better quality of life for her.

I have talked with a few other Sanfilippo parents who opted for this surgery and heard mostly positive responses. I also spoke with a few MPS specialists to get their take on whether she should have the surgery. The response from doctors has been overwhelmingly positive.

Waverly's ENT and I are going to have another phone discussion soon to answer some lingering questions. We may a surgery scheduled soon.

Once Again Yet Another House Update...Again

2012-01-19T16:06:00.000-05:00

We are STILL waiting on the approval letter from the first bank. We did received the approval letter from the second bank a few weeks ago. The first bank told us to expect it in 7-10 business days, however we have been told that once before this month.

Last week we received some *stressful* news regarding our loan. Very long story short, I spent all day Saturday in tears. By the end of the weekend, we have a tentative plan in place. It isn't going to be as smooth as we had hoped, however we won't have any problem getting the house.

Stress levels are up though for both Matt and I. We are anxious to get the letter, get through inspection and closing, and MOVE IN.

Photo Memories

2012-01-08T23:02:00.001-05:00

Over the past few days I have been fighting with our computer to save photos. It is a few years old and we ran out of memory. In order to keep the computer in working order, I had to move the photos onto an external hard drive (and a flash drive to be doubly sure). I then had to delete the photos from our computer. A simple task, but emotionally difficult. I take a lot of photos and video of Waverly & Oliver, knowing I will find great comfort in them for the rest of my life. Losing them would be devastating, so I am thankful to have been able to back them up.

As I went through over 8 years of photos, I couldn't help but be transported to the past. To moments before Sanfilippo entered our vocabulary. I sometimes forget just how much Sanfilippo has physically changed the kids. The "coarse features" that are often described of children with Sanfilippo have become more visible. I was especially struck when looking back at pictures of Oliver.

My photo have decreased over the past few months, so I grabbed my camera as we headed down to the National Mall on Saturday's unusually warm afternoon. I was able to capture some lovely moments.

House News - Almost There

2012-01-05T09:50:00.001-05:00

We are getting so close to getting the house!! Yesterday, we received the approval letter from the second bank. We are waiting for the approval letter from the first bank and then we are ready to schedule closing. It could be any day now!! I know my stress level is going to sky rocket in the coming weeks with everything we are going to have to do, but it will all be worth it. Thanks for hanging in there with our family and for helping us get to this point.

PA Trip

2012-01-05T09:13:00.001-05:00

After our time in Hilton Head, the kids and I took a trip to PA to spend some time with my family. We celebrated Christmas with grandparents and great-grandparents. On Friday, Matt took the train up to spend a few days with us. Oliver turned 5 and he didn't want to miss the birthday celebrations.

Oliver with my Nanna. We had breakfast at our usual place and they brought out a plate of cupcakes for Oliver's birthday. We love you Hill's!!!

Waverly waiting for her haircut at Sweet & Sassy. She did such a great job and her new little bob looks adorable.

Hilton Head

2012-01-05T09:02:00.002-05:00

As I mentioned, we opted to head out of town for Christmas this year. The traditions of the holidays were depressing us and a long weekend away sounded like the perfect idea. We found a great deal for Disney's Hilton Head resort. It was a long drive, but the kids were wonderful in the car. We had a beautiful suite with laundry and a full kitchen. The resort was family friendly and low key. We spent our days walking the beach, standing in the surf, swimming in the (heated) pool, exploring the town and eating some delicious food. We also took a day trip to Savannah on Christmas Eve.

It was wonderful for my mental health. The sadness that comes with the holiday season was avoided. We had great family time and made some lovely memories. I think we may have a new family tradition.

Eating dinner outside the night of our arrival

Waverly & Oliver in front of the Bambi & Thumper topiaries

Waverly & Matt walking the beach

Matt & Oliver standing in the surf (Oliver's feet were red and cold, but he loved it)

Family Photo at the beach

Waverly & Oliver in front of the fountain at Forsyth Park

Oliver running on the sand

Christmas morning outside on our balcony

Holding Hands

2011-12-18T22:20:00.000-05:00

This may be one of my all time favorite photos of the kids. I apologize for the fuzzy quality. I snapped it on my phone as quickly as possible, because I knew they would not remain in this position for long. Do you see their hands? Waverly often reaches over to hold Oliver's hand, but typically he swats her away. Not today. He took her hand and held it. It is such a simple gesture, but it speaks volumes to me.

Oh Oliver!!

2011-12-18T22:03:00.002-05:00

Oliver's teacher sent me a few photos from his past week of school. The top photo shows him eating the gingerbread cookie he decorated. If I know Oliver, he attempted to eat the cookie before any decorating was completed. He is simply so excited to see a treat, he wants to down it immediately. Judging by his lips and shirt, I think some icing did make it on the cookie this time.

Thankfully, Oliver has been a very good sleeper for us. He sometimes wakes early (4am), but many days he sleeps a full night. Friday was one of the unfortunate early rise days. I sent him to school, thinking he would nap once he returned home. He could not last. After lunch, he went to the Book Look area and fell asleep in this position in less than a minute. He took a nice 90 minute nap before it was time to head home for the day. Little cutie.

Weekend Adventures

2011-12-14T21:50:00.001-05:00

This past weekend Waverly was at Jill's House. We packed her bags for her overnight adventure and dropped her off on Friday night after dinner. As always she was all giggles as we walked through the door. She happily took the hand of a volunteer and off she went to settle into her pod for the evening. She had one of her favorite staff members assigned to her for the weekend, Jenny. She loved her time in the pool, playing chase in the gym (Jenny said she was laughing so hard and would look back to be sure Jenny was still chasing her), watching a movie in the pod and playing on the playground.

Matt and I really enjoy the opportunity to do some special things with Oliver, whilst Waverly is away. We went into DC Saturday for a nice lunch at one of our favorite restaurants. We then went to the Botanical Gardens and the art museum. Oliver's favorite part of the day was riding the escalator over and over again. A close second was simply being able to run through the gardens and climb. We had such a lovely day.

We are always anxious to pick Waverly up Sunday night and we are typically counting down the hours until our reunion. We arrived to find a very happy, but very tired little girl on our hands. She did great!! I am simply so grateful to have such an incredible resource within our community.

House News

2011-12-14T21:30:00.001-05:00

Still no major news on the house front. We did find out that the BPO was completed, meaning the bank should make a decision within 7 business days (per their most recent communication). Maybe we will receive the best Christmas gifts of all. Approval letters from the banks to the sellers to us, meaning the house is finally ours. It has been 7 months and counting. A short sale is extremely misleading.

Christmas Blues

2011-12-09T13:42:00.001-05:00

I have a bad case of the Christmas blues.

In years passed, I have forced the traditional Christmas experience on the family. It just doesn't work for us. I am tired of feeling disappointed that things are not as they are "supposed to be". They are the way they are and it is time I adjust my holiday expectations. So this year, we are doing things differently. We have opted to take a few days off and head out of town to the beach. Just Matt, the kids and I. No tree. No presents. Just good old family fun. We will walk in the sand, play at the playground, swim in the heated pool. We are going to do the things Waverly & Oliver love to do.

House Update

2011-12-09T13:38:00.001-05:00

Keep the prayers, positive thoughts, fingers crossed and good energy coming!! We received another update on the house this week. It looks like bank #2 is ready to hand over an approval letter. Bank #1 has to redo the BPO (appraisal) because the first one expired. As long as there isn't a significant change in the value of the property, we could have approval letters in a few weeks. As I have learned in the almost 7 months of waiting for the short sale to go through, nothing is as they say. However, we are holding out hope that we may receive the best Christmas gift of all - a house!!!

Cruiser

2011-11-30T12:01:00.001-05:00

Waverly's new wheelchair was delivered yesterday afternoon. We have been waiting many long months for its arrival. So far, I love it. Her other chair was much too involved given her needs and way too heavy. It was also too small for her. This chair has lots of room for growth. It is cushy, making for a more comfortable ride. It also has more of a stroller look - basket underneath, adjustable handle. It is also tilted about 30 degrees, which keeps Waverly back in her seat. The sides keep her from leaning. We had to go with purple, given purple is the color for MPS. I think she looks pretty happy and cozy sitting in it as we waited for the school bus this morning.

Happy Thanksgiving!!

2011-11-30T11:55:00.001-05:00

We had a wonderful time in PA for Thanksgiving. We have learned that attempting to leave DC on the day before Thanksgiving is next to impossible. It took us almost 8 hours last year!! (It should take a little over 3 hours.) We decided to leave Thursday morning and arrived in record time. My sister and her family were down for the weekend as well. We had a wonderful time with family, eating a great big turkey meal. The weather was unusually warm, so we spent a lot of time outside taking walks and playing ball in the yard. The kids love being with their cousins and grandparents. It was a great break.

Waverly's Weeknight Adventure

2011-11-30T11:49:00.001-05:00

(It is blog catch up day.)

Last Monday, Waverly spent the night at Jill's House. They are working to partner with local schools to provide week night respite for families. There are a few children at Waverly's school who are registered with JH, so Monday night was a trial run for her school. It was a bit of a last minute thing, so only a handful of kids were there. Wavey once again had a wonderful time. She had a lot of attention from the staff, went swimming, watched a movie, played in the gym. She was all smiles when we dropped her off and all smiles when I picked her up the next morning. I am so incredibly thankful to Jill's House for the work they do for families in the community. And we are so blessed to have them close by - a definite plus to remaining in the DC area.

While Waverly was at JH, Matt & I took Oliver out for dinner to Chipotle. Oliver loves their chips. I loved being out with the men in my life.

Changes

2011-11-20T23:19:00.001-05:00

I have written often about missing Waverly's voice. She used to love to chat, sing songs and recite her favorite books & nursery rhymes. She had a beautiful voice. Oliver never really spoke. He babbled a lot as a baby, but it never developed into language. Aside from a few simple approximations, I have never heard him utter a word. However at the end of each "Mickey Mouse Clubhouse" episode, he used to belt out his version of the word "house" to close out the show. His hands would be thrown out to the side, head tipped back and a loud song/scream would bellow out. I used to love watching MMC with him, simply because I loved to hear the enthusiasm in his voice. Sadly, he no longer does it. I noticed the change a few months ago, but today it hit me just how much I miss that sound.

We are entering the phase with Oliver where the changes begin. Sanfilippo reveals itself more and more, slowing changing the behaviors of my sweet babies. Last week his teachers told me he was falling randomly in the classroom - not tripping or throwing himself down in anger, but just legs giving out. His hands are in his mouth more, trying to meet the intense desire to chew. All signs of Sanfilippo beginning to take over.

I have watched the changes in Waverly. I knew they were inevitable in Oliver. Nothing could prepare me for them and they are most definitely not easier the second time around.

A Day in the Life of Oliver

2011-11-19T22:40:00.001-05:00

It was very quiet Friday morning. Too quiet. I came out to find that Oliver got into the kitchen (I forgot to close the gate). He found a 1 pound bag of M&Ms, somehow opened them and was chowing down. M&Ms were all over the living room and candy coated chocolate was dripping down his face. He began to feverishly shove the candy in his mouth when he saw me. I quickly snapped this photo before cleaning up the mess. He is such a little stinker!!

Friday afternoon, I was able to attend his preschool Thanksgiving Feast. All of the parents were invited for lunch and asked to bring in a favorite food. Oliver was thrilled to eat fresh fruit and pizza - his two favorite foods. He wore his little feather headband in honor of the special day. I had so much fun seeing him among his classmates and with his teachers. He is such a sweet little boy.

VFSS Complete

2011-11-18T10:18:00.001-05:00

Waverly had another VFSS (swallow study) completed on Wednesday morning. We went to Fairfax Inova this time, instead of Children's. The fact that we didn't have to battle morning rush hour traffic or the terrible parking garage at CNMC were huge incentives to the location change. As many of you know, kids somehow do so much better/look healthier when you are actually sitting in the doctor's office. I don't know how she did it, but she didn't do a few of the behaviors we have seen her do at home that caused so much concern. They didn't see any evidence of aspiration, which was great news. She is allowing liquid to fall down her throat, before she actually swallows. And the safe guards we all have in place to prevent aspiration are weakened. Her oral habits are confused. She not longer has the ability to control the use of her tongue in a coordinated manner. The one piece of solid food she was given (a barium covered Cheerio) was swallowed immediately - no chewing.

The recommended we continue the pureed diet, avoiding all foods that require chewing. We do not have to thicken her liquids, since she didn't show any improvement with a thickener added.

I spoke with her SLP, who has been amazing. She has many helpful suggestions for helping Waverly continue to eat/drink orally. She is also going to recommend a dietician for Waverly. She has lost 5 pounds in the last 6 weeks, so we need to bulk up her calorie intake safely.

Thankfully, these are all things we can manage. As we enter into cold/flu season, the fear of illness is strong. We want to keep her eating safely and avoid aspiration, which can lead to pneumonia.

Happy 8th Birthday, Waverly!!

2011-11-17T22:52:00.001-05:00

Happy Birthday to the loveliest girl in the world!! Waverly turned 8 years old this week. Her laugh is infectious and her smile is inspiring. She has the most beautiful soul and I am honored to be her Mommy.

Happy Birthday, Wavey!!!

Reflections

2011-11-17T22:24:00.001-05:00

Over the past few days, I have taken some time to reflect on our trip. It was such a special week. In the midst of vacation my emotions remained in the background. And then the final day, as I left the Magic Kingdom with Waverly, I felt the sadness creep in. As we walked back to the hotel to catch a bus to the airport, I cried. Unlike most families who lament the loss of youth in their children, I long to stop time to keep the devastation of Sanfilippo at bay. I know that if/when we return to Disney World, Waverly & Oliver will most likely be much more effected by the disease. I cried because I can't freeze time and and stop the impact Sanfilippo has on the kids.

There were a few moments during our trip that will remain in my heart forever. The excitement of rounding the curve to Camp Minnie-Mickey and seeing all of the characters waiting there to welcome Waverly & Oliver was something I will never forget. The cast of "Nemo" singing "Happy Birthday" to Waverly, inducing smiles and giggles from her, will be a favorite birthday memory. And watching the women at the Boutique so sweetly put Waverly's hair up with the tiara was especially sweet. It was a taste of watching my daughter get ready for her prom or wedding day. She sat so beautifully, looking at her princess book and listening to princess songs. And when she was done, I could tell she felt beautiful. She would grab the sides of her dress and hold them up, smiling as I told her just how pretty she was.

I am so grateful to Mack Trucks and Disney for arranging the most incredible trip for our family. It was by far our favorite vacation with the kids.

Disney World - Act 7

2011-11-16T21:30:00.001-05:00

Our final days were spent doing our favorite things. It was such a great trip and we were definitely not ready to see it end. It was a wonderful escape from reality and we made some marvelous memories with Waverly & Oliver.

Oliver hugging Pooh

Smiley girl

Waverly with her best bud, Minnie

The kids and I on the Tea Cups

Waverly & Oliver waiting to board Dumbo

Matt and Oliver about to fly

All of us on the carousel

Disney World - Act 6

2011-11-16T21:20:00.001-05:00

Thursday was spent all over Disney World. We started our morning at Epcot with a princess breakfast. Neither of the kids were too enthused - they were both hungry and were much more excited about the croissants than meeting the princesses. We then monorailed it over to the Magic Kingdom. Disney had arranged for Oliver to get made over to look like a pirate and for Waverly to visit the Bibbity Bobbity Boutique to get a Cinderella makeover. Matt and I weren't sure how the kids would do, but we at least wanted to give it a try. I am so glad we did! Oliver actually enjoyed the attention and made an adorable little pirate. Waverly was given the royal treatment at Cinderella's castle and looked beautiful. The staff did an amazing job and kept her happy, which is a lot given how much she detests having her hair touched. She made a gorgeous Cinderella. That night we visited with some friends of ours who live in Orlando. They have 2 daughters, their oldest has Sanfilippo. It is always a treat to see them when we are in Orlando.

In front of the Epcot fountain

Waverly getting her hair done

She did such a great job while they worked on her hair

They gave her a book to read and one of the workers came over to sing to her

Pretty girl!!

Jennifer putting on the finishing touches

Cinderella in front of her castle

Argh!!! Pirate Oliver

Disney World - Act 5

2011-11-16T21:15:00.001-05:00

Wednesday was spent at Hollywood Studios. Waverly went to a lot of the shows and parades. Oliver spent much of the day running around the park and exploring the grounds. He was still afraid of loud sounds and the dark. The guys wore their Mack t-shirts. I had them made to thank Mack Trucks for such an incredible trip.

Here is Oliver meeting Handy Manny

Waverly & Daddy

Oliver & Matt meeting Lightning and Mater

Oliver loves "Cars", so he was very excited to meet them

Disney World - Act 4

2011-11-16T21:00:00.001-05:00

Tuesday was a special day. We were able to sleep in and relax in the morning. My mom and I went shopping. The kids went to the pool with Grandpa and Daddy. Oliver was thrilled to be in the water. We then headed back to the Magic Kingdom. They had arranged for the kids to have a private Meet& Greet with Minnie Mouse, Mickey Mouse, Cinderella, Prince Charming and the Fairy Godmother. All of Waverly's favorites were there and once again she went straight for Minnie Mouse. The Fairy Godmother was lovely and so kind to the kids. Afterwards, we were led to a special seating area for the parade. We had lunch at Crystal Palace with the Pooh characters and later that night we attended Mickey's Very Merry Christmas Party - complete with snow on Main Street and hot cocoa. The special night time Christmas parade was a real treat and we have front row seats for it. It truly was a magical day!!

Oliver playing in the spray park

Waverly & Oliver splashing in the water

All aboard the choo-choo train

Oliver taking Grandma for a spin

Waverly "kissing" Minnie Mouse

Our family with the characters

Daddy trying to show Oliver he doesn't need to be afraid

Waverly & Pooh

Waverly getting a kiss from Pooh

Oliver hugging Pluto

Oliver is getting a little more comfortable with the characters

Waverly adores Pluto

Waverly is all smiles

Our family on Main Street USA

I love her smile!!

Waverly & I in front of the castle

Waiting for the parade to begin

A beautiful kiss from the Fairy Godmother

Disney World - Act 3

2011-11-16T20:33:00.001-05:00

We spent my birthday at Animal Kingdom. It has become our favorite park at Disney World. On our last few visits, the cast members there was especially kind and considerate to our family. We started the day with breakfast at Tusker House with Donald Duck. Waverly loved meeting the characters....Oliver was once again a bit overwhelmed with everything and ran away from them.

Disney was made aware of our family's vacation and the special circumstances ("Undercover Boss" and Sanfilippo). They contacted us to let us know that they wanted to sprinkle some "extra pixie dust" on our trip to make it even more magical. The management of Animal Kingdom went above and beyond to make it an amazing day. After breakfast, a manager asked us if we would like to open Camp Minnie-Mickey. They walked our family in, before anyone else was allowed back there. As we arrived, a bunch of characters were there waiting to greet us. They also arranged to have a Disney photographer there to capture the moment. The kids had their own special meet & greet with the characters and we raised the flag to open the Camp. It was by far the best memory of the trip. Waverly saw Minnie Mouse and took off right to her. She spent the next 15 minutes walking around with her, holding hands and giving her hugs. The person in the Minnie costume was incredible!!! We were then given VIP seats to the Lion King and Nemo shows, with the special opportunity to meet the cast members after each show. The Nemo cast was especially incredible. They sang "Happy Birthday" to Matt, Waverly & I and they gave such love to the kids. We had reserved seats for the parade and every character came over to greet Waverly during the parade. (Sadly, Oliver was also afraid of the noisy parade and missed it.)

Waverly & Donald Duck

Our family with Donald (Oliver's favorite character)

Waverly getting a kiss from Mickey

The characters waiting for us at Camp Minnie-Mickey

Holding the flag about to be raised

A scared Oliver finding comfort on Daddy's shoulders

Waverly running to meet Minnie

Our family with Minnie

Hugs for Baloo

A very giggly Waverly excited to see Pluto

Greeting Pluto

Oliver giving hugs to Brer Bear

Waverly & Grandma at the Lion King show

Grandpa impersonating a warthog for the show

Waverly & I walking around the stage as part of the Lion King

Our family with the Lion King cast

Oliver loved the safari - his favorite thing about AK

Our family with the cast of Nemo

Waverly with the girls who played Nemo and Dorie - they were lovely

Holding hands before the parade

Pretty girl waiting for the parade to begin

Waverly meeting Chip

Waverly meeting Brer Rabbit

Oliver on the bus back to the resort - his other favorite "ride"

Oliver running away from Donald in fear

The family

Disney World - Act 2

2011-11-16T20:24:00.001-05:00

We spent our first full day at Magic Kingdom. We made the mistake of taking the kids on Snow White for their first ride. Oliver was terrified of the ride. It is dark and scary. And we totally forgot that the ride primarily highlights the wicked queen. It scarred Oliver and he was afraid of any ride we tried that was inside. He would begin wringing his hands and whimpering. So sad. It took us a while to realize that we simply had to adapt to his fear and change our expectations. He enjoyed the rides that were outside and his favorite thing was just to walk around the park. Here are a few favorite photos from our first day.

Oliver with his Donald Duck ears

Waverly with her princess ears & tiara

Oliver waiting to ride the carousel (safe outdoor ride)

A very excited carousel rider

Oliver and I on Dumbo (my favorite ride)

Air born on Dumbo

Our family getting on the tea cups

A very happy Waverly, Oliver wasn't so sure about it

Oliver walking with Grandpa & Grandma

Waverly enjoying It's a Small World with Matt

My parents with the kids

Oliver's favorite ride of all - the Liberty Belle boat ride

Disney World - Act 1

2011-11-15T20:13:00.001-05:00

As many of you may remember, my step-dad was featured on the show "Undercover Boss" back in January of this year. As his reward for participating, he was given a trip to Disney World with our family from Mack Trucks. It was a wonderful gift - a chance for the kids to be in one of their favorite places and for all of us to make some amazing memories with them. After a lot of planning, the time arrived and we flew to Orlando last week.

Mack Trucks was so thoughtful and actually flew my parents to DC early in the morning, so we could all fly to Florida together. The kids did great on the plane and the trip was so smooth. They arranged for us to stay at Bay Lake Towers, a beautiful new resort right next to the Magic Kingdom. We had a 2 bedroom suite, complete with a full kitchen and washer/dryer (hooray!!!). Disney upgraded us to a gorgeous room on the 14th floor overlooking the park and the lake. We could sit out on our balconies and watch the night time fireworks and the water parade.

Living Area

Master Bedroom

View from our Room

When we checked into our resort, we were informed we were the "Family of the Day". I asked what that meant and was told to turn around. Behind us were 8 staff members with bunches of balloons for the kids. They gave us a special welcome and the kids were both excited to play with the balloons. When we entered our room, Disney had put together incredible gift baskets for the kids - dolls, stuffed Mickey's autograph books, ear hats, pins, cups, photo frame, toys, etc. It was so kind of them.

Gifts from Disney

The night we arrived we had dinner reservations at the Cape May Cafe. We had never been there before. The food was great!! It was a buffet, clam bake style. I worried about finding food for Waverly, given the change in her eating habits. However, we could always find soups, pastas, mashed potatoes, or other soft/pureed foods for her. Oliver is my picky eater, but somehow Grandma got him to try a crab leg. He was hooked and my mom spent most of dinner cracking crab legs for him as fast as she could.

Oliver & his Crab Leg

MIA

2011-11-13T22:01:00.001-05:00

Sorry about the lack of blog posts. We were at Disney World for an amazing week of vacation. I cannot wait to share the moments and photos from our time in Florida. We had a fantastic time and made some memories that will last a lifetime.

School Photos

2011-11-13T21:50:00.001-05:00

It is that time of year. School photos were delivered and I was thrilled. Both pictures perfectly capture the kids.

gulp

2011-11-03T22:49:00.000-04:00

I am so thankful we have a speech pathologist who makes house calls. She specializes in feeding issues and stopped by this week to take a look at Waverly. The changes in her swallowing seem to have come about so suddenly. Kathryn definitely agreed with our concerns. It is taking Waverly 10+ seconds to swallow liquid. She is holding it in her mouth and then gulping. She is also losing her suck. We are taking Waverly into the hospital in 2 weeks for a VFSS (swallow study). This will allow Kathryn to see inside Waverly's mouth and throat to determine if any food/liquid is entering her airway. This causes aspiration and can develop into pneumonia.

We have made some adaptations to meal time and Wavey seems to be adjusting well. Her teachers are also having to make some changes within the classroom, but all reports have been positive thus far. I think we are entering into a new normal.

Trick-or-Treat

2011-11-01T22:15:00.001-04:00

Last night we took the kids trick-or-treating in Vienna. We decided to go down the street we are trying to move onto. We wanted to get a feel for the neighborhood. We had such a great experience. A few of the neighbors asked us if we lived nearby and we told them we were trying to buy the purchase down the street. They told us about the block parties and many young families on the street. We also passed a bunch of school age kids who said "That's Waverly" & "That's Oliver". (One of the many reasons I want to remain at the elementary school.) We also ran into the woman who told us about the house back in May. Her daughter is also in 2nd grade and knows Waverly. She seemed excited at the prospect of having a new neighbor.

It was such a great experience. And it was confirmation that we really need this short sale to go through, so we can move onto such a great street. Please pray, cross fingers & toes, send positive energy, do a house dance....whatever you can think of make this sale happen.

Run! Matt! Run!

2011-11-01T22:02:00.003-04:00

Congratulations Matt!! He ran the Marine Corps Marathon 10k Sunday morning for Team Jill's House. It was a freezing cold morning for a run, but he did beautifully and was so excited to raise money for such a worthy organization. In total, Matt has raised $2935!!! There is still time to donate, if you have yet to do so. Just click HERE and help us raise funds for Jill's House, a respite facility for children with special needs.

Thanks to all of you who donated!!

A Reminder

2011-10-29T23:13:00.000-04:00

I spent some time cleaning our bedroom this afternoon. Like many families, there is an area of the home that all things without a home end up. For us, that is our bedroom. We had a bunch of paperwork that needed to be shred, so I decided to finally do it. At the bottom of the pile were our medical files from the embassy in London. The ones belonging to Matt, Oliver and I were all fairly thin. Waverly's was at least four times the size of ours. I opened it up and was transported to 4 years ago...abnormal MRIs, course features, developmental delays. A few months into hearing aids and intensive therapy, we knew there was more to Waverly's issues. The most frustrating part of trying to find an answer was waiting. Waiting for appointments with the right doctors. Waiting to get into the lab for tests. And the worst was waiting for lab results.

The most interesting part of the file were the emails. I was so touched to see emails flying between the embassy, State's medical unit in DC, and our doctors in London. Emails I was not privy to, but showed how dedicated the nurse and nurse practitioner were who were helping us find answers.

I remember thinking I was not strong enough to handle the diagnosis. Not strong enough to fight our insurance company for a chance to take the kids to Duke to find out about HSCT. Not strong enough to manage. Yet here I sit, almost 4 years (gasp!) later. Strong.

I needed that reminder tonight.

Mr. Juice Bear

2011-10-29T22:27:00.004-04:00

This is Mr Juice Bear. He is our new best friend. Waverly has had a rough week drinking. I noticed that she wasn't finishing her cups of milk. (She typically uses a straw sippy cup.) I tried the thickener, chocolate milk, whole milk - nothing seemed to work. We have noticed that her hands sometimes get in the way when she is trying to drink. Her hands are so manic they turn the cup all around and she in unable to get the straw in her mouth. She also would prefer to chew the lid than sip her drink. I tried holding her hands down and placing the straw in her mouth. That didn't work.

After a week of trying all sorts of things, I pulled out Mr. Juice Bear. The Speech Therapist who works with Waverly's feeding issues gave it to us a few months ago. It is a simple honey bear with a clear tube straw. The purpose of the "cup" is for an adult to squeeze the belly of the bear to propel the liquid up the straw and into the child's mouth. It has been working beautifully. It seems as though Waverly is unable to independently work a straw. This bear allows her to stay hydrated with our help.

I am not sure if this is a temporary change or our new normal. It is a bit unsettling to know that she cannot seem to drink without our assistance. This was one of the signs we were to watch for in terms of deciding about a feeding tube. My hope is that in a few days, Waverly will once again begin sipping on her straw as if nothing ever happened. For now, Mr. Juice Bear will be with us where ever we go.

IEP Meeting

2011-10-29T21:54:00.001-04:00

I had an IEP meeting for Oliver this week. A few years ago, IEP meetings filled me with fear. Everything I had heard was "us vs. them" and how I need to fight for my children. My first few meetings were terrible. I was combative and defensive. I then realized that the people sitting around the table were all on my team - Waverly & Oliver's team. Yes, we would disagree over special services and goals. However, coming to the table with respect and collaboration truly has helped the process go smoothly.

I know our family is fortunate to live in a school district with wonderful special education services. They have so much to offer my kids. The meeting was so easy. The teachers and staff know Oliver and they realize that his situation is unique. Our goals are focused on maintaining skills and adapting to changes, while still focusing on certain skills to move forward.

It was sad though. His teacher and the therapists all talked about how his attention span has significantly decreased over the past few months. It is much more difficult to get him to focus on a task for more than a few seconds.

One of the reasons I am so hesitant to move out of this particular school is that they know Waverly & Oliver, really know them. They have been at the school for 3 years. They have seen the changes in both kids. They can look at Waverly and anticipate what the next few years are going to look like for Oliver. I know that a new school would quickly fall in love with the kids, but I find solace in the fact that they "knew them when". I think it helps them understand the cruelty of Sanfilippo and all that it takes away.

Halloween Parade

2011-10-29T21:38:00.000-04:00

We took the kids to the Vienna Halloween parade on Thursday night. Oliver loves wearing his costume, so we thought we would dress him up for the occasion. Plus, it provided an extra layer of warmth. Typically, Waverly does not like loud sounds and Oliver doesn't seem to mind. We had a role reversal for the parade. Waverly was all smiles as the motorcycle cops and fire trucks drove past. Oliver started screaming. He lasted only a short while before I decided to walk him back to the van. Waverly thoroughly enjoyed it.

Waverly's Heel Cord

2011-10-29T21:31:00.001-04:00

As I have said in previous posts, Waverly is having a more difficult time walking. It has really deteriorated over the past few months. Thankfully, she is still moving around and doesn't seem to be in any pain. In talking with our physical therapist and PMR doctor, we opted for some new orthotics. She will wear them at night while she sleeps. They will stretch her heel cord, which is incredibly tight. The hope is that the constant light stretching during the night, will keep her more mobile during the day. The longer we can keep her walking, the better her overall health will be.

We had the orthotics cast last week and we should have them in about a week. We picked purple and green polka dots for the straps and purple foam. I am hopeful that we will see some improvement with them.

Oliver's Field Trip - Photos

2011-10-29T21:27:00.000-04:00

Here are a few photos from Oliver's preschool field trip to a local working farm. He loved petting the horse and climbing the fences, but by far his favorite activity was jumping in the puddles. He was a soggy, muddy mess by the end of the morning, but he had a blast.

Oliver Scootering

2011-10-25T21:32:00.001-04:00

A very short video of Oliver scootering down the hill, with help from Matt.

Oliver & His Scooter

2011-10-25T21:29:00.001-04:00

Waverly spent the weekend at Jill's House, which meant Oliver had Mommy & Daddy all to himself for 2 whole days. While Waverly was off having adventures of her own, we had a great time with Oliver. On Saturday, we took him to the Maryland Renaissance Festival. It is a huge fair in a beautiful wooded area near Annapolis. We have gone almost every year we have lived in DC. It offers fun entertainment, great food and fabulous people watching. On Sunday we went to our favorite pancake place for chocolate chip, banana and praline pancakes for the family. We then took Oliver out for a long walk walk with his scooter. He LOVES it!! Although, he has learned that the scooter we have at home has a larger base. He is able to put both feet on it and wait to be pushed. (His scooter at therapy can only accommodate one foot.)

I love this photo. He has a beautiful smile - such a happy little boy.

Field Trip

2011-10-20T09:05:00.001-04:00

Yesterday, I accompanied Oliver and all of the preschool classes to Flying Pan Park for the morning. It was such a fun excursion. Oliver rode the bus with his classmates and I drove. He must have had a great time, because his teacher said he had the giggles on the trip. We took a nice wagon ride around the property. Oliver loved it...except when we would stop for the driver to talk about what we had seen. Oliver simply wanted to bump around. It was so cute to see him cuddle up with his teacher and hold her hand. We also spent time exploring the barns and seeing all of the animals. He enjoyed the horse, but kept wanting to pet the horse's eye. Thankfully, it was an understanding horse. I think the biggest draw were all of the puddles. He and the other boys spent a considerable amount of time jumping in them. We finished with snack time, just before the rain started to fall.

It was a short trip, but a wonderful reminder of how thankful I am to have the kids in such a great school. He loves the staff and he is loved by them.

Busch Gardens

2011-10-20T08:47:00.001-04:00

We took the kids to Busch Gardens in Williamsburg on Sunday. As part of Oliver's Make-a-Wish trip he was given a passport for free entry for the entire family to hundreds of amusement parks. We have been trying to take advantage of the offer.

Busch Gardens has a Sesame Street themed kids area. Both kids loved it. Oliver loved the rides and Waverly loved the Elmo & Friends show. It was the perfect day.

We were able to meet up with some friends while we were there. The C family has 3 kids, 1 who has Sanfilippo. We met them a few years ago and they are a lovely family. We had a great time exploring the park with them.

Bad News

2011-10-20T08:42:00.002-04:00

We received some bad news regarding the house situation last night. The seller's second mortgage bank wants us to begin the entire process all over again...this after beginning the process 5 months ago. We are not sure what we are going to do. This house is a great fit for our family, but I cannot keep waiting on an unknown.

Dragon Mom

2011-10-18T13:16:00.004-04:00

The article below was in the NY Times on October 16th. I am very proud to be a Dragon Mom.

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Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Yet Another House Update

2011-10-13T10:46:00.000-04:00

5 months in and still no decision on the house. Our realtor warned us that short sales were difficult, but I would never have expected it to take this long. We received an update last night. The sellers have 2 mortgages on the home. The first bank has approved the short sale, but the second bank has yet to send their approval letter. They have had more than enough time to make a decision. The approval letter could come through today or a month from today. At this point, I just want a decision to be made. I am tired of waiting and being in limbo.

Big Boy

2011-10-13T10:37:00.000-04:00

Oliver and his blue tube

New Orthotics

2011-10-10T23:09:00.000-04:00

Oliver had another successful day with the blue chewy on Friday. He went the entire school day without a pacifer. I am incredibly proud of him and his teachers. Hopefully, we will be able to incorporate the chewy at home this week.

I took Waverly & Oliver to Children's on Friday to meet with their physical medicine doctor. Thankfully, she didn't see any changes in Oliver. This is wonderful news. All of his physical therapy, stretching and shoe inserts are working. Waverly is a different story. Her heel cords are incredibly tight, even with daily stretching and PT. Her walking has deteriorated - she is walking on her tip toes, with her feet turned in. The doctor recommended we use orthotics during that night that can stretch that heel cord as she sleeps. She didn't think AFOs would be helpful and would only serve to impede her walking. I hope the new orthotics will help keep her on her feet for as long as possible.

Embrace the Chewy

2011-10-06T20:54:00.000-04:00

Those of you who know our kids, know that children with Sanfilippo have an insatiable urge to chew.

It started when Waverly was about 3. All of a sudden, after never mouthing as an infant, she began putting books and toys in her mouth. It was an incredibly frustrating behavior. We thought she had pica, because she would chew the corners off all of her books. When we moved to London and Waverly started preschool with an OT and speech therapist, they began using a yellow chewy tube. To me, it was a huge sign that read "special needs". (This was all pre-Sanfilippo diagnosis.) Eventually, I embraced it. It was easier to redirect her to the tube, versus having her chew on everything she could get her hands on. Since then we have yellow tubes, red tubes, chewelry necklaces, cheweases, etc. We always have one handy for her, whether worn around her neck or clipped to her bib.

We have embraced the chewy.

Now Oliver, on the other hand, has been a mouther from birth. He was in the NICU for his first 2 weeks of life and was introduced to a pacifier there. (Waverly would never take one.) He loves his pacifier still and we have allowed him to use it as needed. For the past few months, he needs something in his mouth constantly. However instead of sucking on the pacifier, he is chewing them. We are going through one per day, because once they are chewed through he doesn't want them anymore. That gets expensive! And it really isn't safe. I worry he is going to choke on a piece of the silicon. We have tried to transition him to a chewy. He thinks they are all for Waverly. He will chew on them for a short time and then deliver them to his big sister. (She is always thrilled. He will place them right in her mouth.)

I spoke with his teachers and speech therapist at school. They thought getting him a chewy that we do not currently have and introducing it to him at school, without Waverly, may help him transition. Yesterday, they pulled out a beautiful BLUE chewy tube (we don't have any blue ones for Wavey). They attached it to him using a beautiful ribbon pacifier clip. And to get him started, they dipped it in maple syrup (yesterday was pancakes for lunch day). He went the entire school day without a pacifier. When they saw him chewing his hands, they would put the tube in his mouth. Today was day 2 of "Plan Oliver & the Blue Chewy" and another successful day. No pacifier for the entire school day. I am truly proud of my little boy.

I am also so incredibly thankful for teachers, IAs, and therapists within the school. They came up with the idea, implemented it and are working to redirect Oliver to a new normal. We are so fortunate to have such incredible people in Waverly & Oliver's lives.

Prayers for Megan

2011-10-04T23:43:00.000-04:00

I just spent some time reading a little girl's Caring Bridge site. She has Sanfilippo and is in the final stage of the disease. Her little body is shutting down and she has been sent home with hospice. She is 11 years old. Please keep her and her family in your thoughts & prayers.

I am 3.5 years into my Sanfilippo journey. This news never gets any easier. I cannot help but calculate Waverly & Oliver's ages - wondering how much time they have left. I am trying to recenter myself, focusing on the here and now. Hoping for a miracle cure that can intervene and extend my time with my babies.

Quiet Weekend

2011-10-03T22:05:00.001-04:00

We had a quiet weekend cuddled up indoors, safe from the chilly rain. Waverly had a cold, so it was the perfect excuse watch movies and bake. We had our own little Oktoberfest celebration on Saturday and finished the day with homemade apple dumplings.

Still no news on the house. My fingers and toes are crossed that we will learn something this week. I really hope to share positive news with you all soon.

House Update

2011-09-30T14:05:00.002-04:00

We are getting closer!! The sellers bank should make a decision about the short sale soon. The seller still has to agree to the terms set forth by their banks, but if that happens we are on our way to closing on our house. There are still a lot of things that need to fall into place, but at least we are beginning to see some movement. We are desperate for a decision. We have been living "in limbo" for far too long. We are ready to settle into a home. I am feeling incredibly stressed at the prospect of a move, but the reward of settling into a home with a big backyard for the kids to enjoy makes it all worthwhile. Thanks for your prayers and positive thoughts!!

Ma-Ma

2011-09-27T13:55:00.001-04:00

I snapped this photo of Waverly yesterday as we were waiting for the bus to arrive. She has been so happy and smiley. She is also saying "ma-ma-ma" constantly. We may not get another "mommy", but I am thrilled with a "ma-ma".

Memory Made

2011-09-24T23:14:00.003-04:00

I spent some time volunteering in Waverly's classroom yesterday, which did my spirit good. They are learning about autumn, so we made paper mache apples. They will paint them on Monday. I had such a great time helping the kids apply strips of newsprint to balloons. Most of them were not too excited about getting their hands messy, including Waverly. I think she thought it tasted good though, because she had a lot of it around her mouth (thankfully it is simply flour, water and salt). After we made the apples, I also read a story to the class. It was so much fun!!

It was a great reminder to enjoy the moment. Memory made.

Drowning

2011-09-22T22:11:00.002-04:00

I have been quiet the past few weeks. We are still finding our rhythm with the school year. I am actually enjoying the change in having Oliver attend afternoon preschool. We have been able to spend more quality time together (the past 2 years he napped in the afternoon, after morning school). We have visited playgrounds, ran errands and just hung around at home. I like having those special adventures with him.

On Tuesday we met with our medical equipment rep. Waverly has already outgrown her pretty pink wheelchair and we need something else to better fit her needs. She is getting heavy and my back simply cannot handle lifting her up into her chair. I wanted something that she can back into herself. I also wanted a lighter chair. (Her current chair is over 40 lbs!) Her trunk is weakening, so we need some additional lateral support to keep her centered. We also need a sturdier vest to keep her back in her seat, instead of hunching forward. I think we found a good option that meets all of our needs. The rep also brought a sample wheelchair that we just ordered for Oliver. It is a very simple pediatric wheelchair (more like a large stroller). Oliver climbed right up and waited for a ride. As I stood there looking at both kids in their respective wheelchairs it took everything in me to not burst into tears. I am just now sure how I am going to manage both of them as the disease progresses.

Also on Tuesday, Waverly's teacher sent home some questionnaires. They wanted to know Wavey's favorites for a class project. Two questions gave me pause: 1) Waverly's best friend is_______ and 2) When I grow up I want to be _______. My poor sweet girl doesn't have a best friend. There are no sleep overs, no birthday party invitations, no secret notes, no phone calls for her. I ended up putting the name "Jessie" as her best friend - she is a little girl who also has Sanfilippo and I like to think of the girls as kindred spirits. I had no idea how to answer the second question. ***Because I know Wavey's teachers read this, I was not upset by the questions. It was just difficult for me.***

I have written about the undercurrent of sadness. It feels like the current is growing stronger as the kids get older. Sadness seems to wash over me more often. And I have a more difficult time catching my breath. I think the new school year, impending birthdays and the developmental assessment from MN have all left me reeling. I can quite get my footing and the waves of sorrow are crashing on me.

I read a recent post from another mother of 2 children, both with Sanfilippo. Her eldest child passed away earlier this year. She remarked that she was going through some items and came upon a toy that her daughter used to love to play with. She looked back and wished she would have taken the time to play with her daughter more with that toy. I keep replaying that sentiment in my mind. Slow down. Take the time to enjoy Waverly & Oliver in the moment. I have already seen those moments pass. Waverly no longer wants to have tea parties or feed her baby doll. I wish I would have taken advantage of that time and made more memories with her. I see Oliver struggle with puzzle he so easily completed a few months ago. He no longer wants to hold a crayon and put it to paper. Why didn't I spend more time doing those activities with him. Why didn't I build more trains or towers with the Duplos?

I am struggling.

All Rides, All Weekend

2011-09-19T08:56:00.001-04:00

As part of Oliver's Make-a-Wish trip, he was given a passport to one free visit at over a hundred amusement parks. We decided to take advantage of the pass on this beautiful weekend and went up to my parents in PA to visit 2 parks. On Saturday we visited Dorney Park. Waverly stayed home for a Grandma day, while Matt & I took Oliver to Planet Snoopy. We had so much fun. It always takes Oliver a few rides to realize that he can keep riding all day - lots of throwing himself to the ground after the first few rides until he learns the routine. Then he begins running from ride to ride in excitement. We had a great day just with Oliver. Yesterday, we took both kids to Dutch Wonderland. It is such a lovely park - perfect for younger kids. Both kids had a blast. We weren't sure if Waverly would still enjoy the rides, but she was all giggles for most of them. We typically only ride the rides that allow us to ride with them, but we couldn't resist putting them on the Hopper. Wavey started trying to grab the little girl next to her, but then focused on Oliver. Once the ride started she held on tight. I love this photo of both of them on the ride.

Back-to-School Night

2011-09-16T09:17:00.002-04:00

Last night I attended Back-to-School night at the kids' school. I always enjoy visiting their classrooms and getting to know their teachers.

I spent the majority of my time in Waverly's room. As I mentioned in previous posts, both of the teachers from last year and Wavey's 1:1 left. Thankfully the aides have remained the same, but it is a lot of change. Both of the new teachers are lovely - really sweet spirits. The dynamics of the classroom have changed a lot. Four of the older kids have moved on and now four kindergardeners are in the group. (Waverly had been the youngest kid in the classroom for the two previous years.) It has been a bit of a bumpy start, but I know there is a huge learning curve to entering a new classroom. I think it is going to be a good year for Wavey.

I also spent some time in Oliver's classroom. I adore the preschool team. He is in the same classroom as last year, with the same aide. His teacher is wonderful. He has had a very difficult time transitioning to school each afternoon. He is still extremely attached to me and cries each time I drop him off at school. It is heartbreaking. However, his teachers assure me that by the time he reaches the classroom he is okay and jumps right into the routine. (I think it helps that he eats lunch when he arrives at school.)

I am incredibly thankful for great teachers, aides, principals and specialists!!

Giggles & Tears

2011-09-13T22:58:00.000-04:00

I have been having a very difficult few days. I have finally had time to process all that we learned while in MN and it has me down.

Waverly is doing well, but her walking has become very unsteady over the past week. She tends to stay in the living room now, instead of wandering about the apartment. She is crawling over to furniture in order to get additional support to move into standing. And she simply isn't able to walk as steadily as she used to. Thankfully, she doesn't seem to be in pain and we haven't had the crying that we had all spring. But she is definitely growing weaker. We actually met with her PT and the wheelchair rep today to discuss a new chair for her. Unfortunately, she has outgrown her pink chair and we need something that will offer better lateral support.

My sweet little Oliver is changing. I hate seeing it. He is struggling at the dinner table. I have noticed he is making more of a mess when he eats. He is ignoring his spoon and simply using his fingers (doesn't work too well with yogurt or applesauce). He seems more manic - unable to concentrate. He is also having more trouble sleeping and waking up super early each morning. I see so much of Waverly in him when she was his age. Just after diagnosis, in her last year of preschool. I think it was our most difficult year.

There is a constant under current of sadness. As the kids get older and the disease continues to progress, I thought it would get easier. I thought I would eventually settle into our reality. I have, however there are moments when it all seems too much. I am in the midst of one of the those moments. I hate seeing the effects of Sanfilippo in their lives. I hate that I am slowly watching all they have been capable of, fade away. I hate knowing all of the changes Oliver will go through the next few years. And I fear what the next few years hold for Waverly.

After a rough morning, I dropped Wavey off at school. Her PE teacher asked how I was doing. And I could see in his eyes that he could see the weight of Sanfilippo on me. I sighed and said okay, holding in the tears that wanted to pour out. He told me how wonderful it was to have Waverly in his class. He talked about her infectious laugh and how happy she makes people.

I love that in the midst of all of the changes her little body is going through, she can easily bring a smile to anyone who meets her. Waverly & Oliver are both such sweet little souls and I am so blessed to have them in my life. In that, I will rest.

The Lift

2011-09-10T16:47:00.001-04:00

Waverly had a very difficult time with the bus this week. She has had a lot of trouble with the stairs and walking down the bus aisle. I think part of it is that it takes her awhile to learn a new routine, so she gets a bit confused. However, her feet just don't seem to be working. She is crossing them as she stands and is then unable to uncross them and move forward. She is also fatiguing quite easily. On Wednesday morning she fell while trying to walk to her seat. The aide on the bus is very nice, but is simply not strong enough to handle Waverly's size.

That afternoon after another rough descent of the bus stairs, I realized we had to start using her wheelchair and the bus lift. I emailed Wavey's teacher and called transportation. Thankfully her bus was already equipped with a lift, so the transition was easy. Thursday morning, we loaded her up and in chair and off she went.

This was not an easy decision, but I knew we had to make the change to keep her safe. She loves being in her chair and this way I don't worry about another fall on the bus. Plus, I spoke with her teacher about not using the chair while she is at school. I don't want her to all of a sudden be seen as immobile. She can continue to walk and move about the classroom as before. The wheelchair is simply for transportation to/from school.

I am not sure if the changes to her mobility are a blip or an actual long term change. It wasn't easy to transition to the wheelchair and lift, but I knew this day was coming. Waverly is still a very happy little girl, with lots of love and giggles for everyone she meets.

Oliver's Last Year of Preschool

2011-09-10T16:19:00.000-04:00

Off he goes to his final year of preschool. We went with a dinosaur theme backpack and lunch box this year. He loves wearing his backpack and always helps us put it on him. Such a big boy!!

House News

2011-09-08T14:41:00.000-04:00

I think the seller's mortgage bank switch has been great for us. We are *finally* seeing movement in the short sale process. We had to supply them with some information via a form on Tuesday and today we received word that an appraiser was coming to the house on Monday for a BPO. Nothing can happen until that BPO is complete, so we are thrilled to know it is scheduled. There are still a lot of things that have to fall into place in order for us to get the house, but at least we are moving forward.

I did call the town hall today to request information on the permit needed to put a ramp on the house. It looks like that is going to be an easy process for us, with only a few days needed for approval once we own the home.

First Day of School

2011-09-08T08:56:00.001-04:00

Unfortunately due to the pouring rain we have had over the past few days, I haven't been able to take the obligatory first day to school photos.

Both kids are doing great adjusting to their new school year. They are attending the same school. Waverly's classroom went through a lot of changes this year - new teachers, 1:1, PT. Thankfully, the IAs have remained the same and the new teachers both seem wonderful. I hope to pop into her classroom next week at some point to talk with her new 1:1.

Oliver is doing great. He is in the same classroom as last year, with his summer school teacher. She is lovely and he seems to respond well to her. He switched to afternoon preschool, which was a little difficult for him the first day.

(Sorry I couldn't flip the photo around.) Oliver fell asleep on his first day of school. He was up at 4:00 am, so by 2:00 he was ready for a nap. I love his little bum up in the air. I drop him off each afternoon and then he rides home on the bus with Waverly at the end of the day.

All in all a successful first day of school for my second grader and preschooler.

NY State Fair

2011-09-08T08:45:00.001-04:00

We spent Labor Day weekend in NY with my sister and her family. The highlight of the weekend is always spending a day at the NY State Fair - great food and great people watching. Unfortunately, it was abnormally hot and humid on Saturday. Waverly & I both detest the sticky weather, so we cut our fair visit a bit short this year. I did not leave without a bag of Maple Cotton (cotton candy made from maple sugar - it is yummy and tastes like a burnt marshmallow). I forgot my camera, but my sister took this photo of Oliver and his cousin walking around the picnic area. J's job was to "herd" Oliver away from the tables to the open areas. I love that they are holding hands.

The Questionnaires

2011-09-06T08:57:00.000-04:00

Here is the folder containing all of the developmental questionnaires I had to fill out. Waverly's are on the left and Oliver's are on the right.

Natural History Study - Take 3

2011-09-06T08:52:00.002-04:00

We have returned home after a long week of travel. We spent last Monday - Thursday in Minneapolis for our third (and potentially final) visit in the MPS IIIA Natural History Study. Once again the kids did great on the flight to MN. Kudos to Delta for holding the bulkhead seats for travelers with special needs. We were able to sit comfortably, knowing Oliver's happy feet couldn't reach the seat in front of us. We spent a few hours with some very dear friends and their children. Seeing them is one of the perks of participating in the study.

Tuesday is the day I dread the most in these visits. The day is spent doing developmental assessments - they are sooooo long. And I spend the evening filling out all of the developmental questionnaires. This visit I had 8 and they are books. We started the morning meeting with the primary doctor who is running the study for Shire Pharmaceuticals. He is so kind and we always enjoy seeing him. He gives the kids a pre-op physical and spends time talking with us about any concerns we have. We were actually shown some preliminary data that I found very interesting. In Sanfilippo Type A, there are many different genetics mutations that will diagnosis a child with Sanfilippo. In speaking with other families, it is fascinating to hear about diagnosis age, capabilities, what the kids are still doing at what age. There is a lot of diversity among the kids. I have even spoken with a mom whose daughter is in her 40s and has Sanfilippo Type A. By looking at over 25 children and comparing that to their development ages, they are able to differentiate which mutations cause a more severe case or those that are slower attenuating. I think this information will be incredibly helpful to parents as the prepare - school, therapy options, future plans, etc.

We were also able to see a graph of the kids developmental age corresponding with their actual age. Even though names were removed and only participant numbers were used, we spotted Waverly & Oliver right away (we know their numbers). There was Waverly, at the very bottom of the graph for developmental age. And she was not the oldest child by far. Heart broken. She has remained steady throughout the study - no major drop off in her developmental age. However, they have her graphed at 8 months old developmentally. 8 months!! I wasn't surprised by her number, but I was so sad to see her at the bottom of the graph. She is the lowest functioning child in the study.

Later in the day, after the assessments were complete, we met with the lead doctor on the neurological side of things. She presented me with the most recent ages on the kids. Waverly's was no surprise - she is steady. Oliver's was shocking. 6 months ago he had a developmental age of 27 months and this visit he was at 18 months. The doctor was beyond surprised to see such a dramatic drop in only 6 months. This does not follow the pattern they see in the other children. Was it just a bad day for him? Was he tired or bored with the tests? Did I think his performance was accurate? I am just not 100% sure. He was most definitely not into the testing on this visit. His attention span is less than what it used to be. He just wanted to get out of the room and run around. He's a bit more hyperactive than before. They compared their assessment results with my questionnaire answers and there wasn't much of a discrepancy. We believe the developmental age is accurate.

Wednesday we were at the hospital for most of the day. The kids started at 5:30 in the morning. They had EKGs, MRIs, ABRs, Lumbar Punctures, and blood tests. They both did great!! They woke up from anesthesia happy and ready to eat popsicles. We spent that night in the hotel, since the kids tend to be wobbly for the entire day post op.

Thursday was another successful flight home.

I am still processing everything we learned from our visit. I am sure I will be writing more about the emotional side of this visit soon. I simply haven't had time to think about it yet.

A Week Off

2011-09-04T21:47:00.000-04:00

We had a very busy week in Minneapolis to participate in our third visit of the Natural History Study for Sanfilippo. We then spent the weekend in New York with my sister and her family. I will update the blog with details later this week.

Closed Carousel

2011-08-28T23:44:00.000-04:00

We survived Hurricane Irene with minor damage. We had about 20 hours of rain and wind, but we only lost power for a few hours in the middle of night. A large tree did fall down, missing our van by only a few feet. All in all it was actually a nice day to stay in, cuddle with the kids, and watch some movies.

We woke up today to a clear sky and sunshine. We had to get out of the apartment, so we headed into DC for a picnic lunch and walk around the National Mall. The kids were thrilled to get out and move their legs. We ate in the Sculpture Garden near the fountain. Matt protected us from some very aggressive and hungry squirrels. I gave everyone a laugh when I went to throw away our trash and another aggressive squirrel jumped out of the bin at me. (I screamed like a little girl!)

We took a nice long walk, enjoying the sunshine and the breeze. As we passed the carousel (which is under refurbishment, not damaged by the hurricane), Oliver started to whimper. He pulled away from my grip and ran to the fence surrounding the carousel. He had a huge smile on his face, waiting for Matt & I to let him ride. I tried to explain that it was broken - signing the word to see if he would understand. He just kept walking around the fence, trying to find his way in. Eventually he took my hand and cried as we walked away.

I was so impacted by that moment. Oliver and Waverly ask for nothing. Oliver will make a dash for the playground or carousel, but neither of them have ever been in a store and cried for a toy. Even when they were younger and I took them to the shop to pick out a gift, they would pull something off of the shelf and within a moment put it back. I always wanted them to show some interest in choosing something special, but they never seemed that interested. It was so fascinating to see him react so strongly to a desire. We never pass a carousel without a ride - it is something I decided soon after the kids were diagnosed. We would take advantage of the little things that brought them so much joy. It was so difficult to see Oliver confused, unable to understand why I had changed the rules and withheld a ride on the horses.

As I held his hand and walked past the carousel, I was so emotional. I wished I could have given him a ride - given him a 100 rides. It truly is the little things...

Great First Impression

2011-08-27T19:12:00.000-04:00

Thursday night we all went to Jill's House for an Open House. Matt had never toured the facility and they were having an information meeting for their school partnership program. One of their goals is to partner with local schools to give families weeknight respite. Jill's House staff would pick the kids up at the end of their school day, take them back to JH for the night and then return them to school the following morning. There were 4 families there from the kids' school. And...this is the part that was so special....the principal and both of the new special education teachers also came. It was a great opportunity to meet the teachers and introduce them to our children. They were also able to get to know JH, in case the school program is implemented there. I was so impressed to see the 3 of them there, during the evening, to support their special education community.

The kids had a blast. I think Waverly was upset that she couldn't stay. Some of the girls who have worked with her during day camp were there and she was so excited to see them. Oliver was thrilled to finally see what was behind the locked doors. He had a blast playing in the gym, jumping on the trampoline, and having a cone at the ice cream party.

It was yet another reminder just how lucky were are here in NoVA, to have such an incredible facility so close by. I had been very apprehensive about this next year; so many changes at their school. I feel so much better already. I think this is going to be another great year at VES!!

Earthquake!!

2011-08-24T08:17:00.000-04:00

Yesterday afternoon was certainly exciting. As the kids and I settled into watching "Cars" after lunch and walk, the entire apartment started to shake. I have been through an earthquake before when we lived in California, so I knew right away what it was. However, living in Virginia, it was so unexpected and definitely scary. Thankfully, Matt was working from home. We both picked up the kids and dashed outside. (Now I know running outside is not the best thing to do in a quake.) No shoes, but I did remember to grab my phone and keys. We gathered along with all of our neighbors in the parking lots. I had our van keys, so we buckled in the kids, turned on a movie for them and the news for us. 5.9 earthquake centered in Virginia. Wow!! It definitely made for an adventurous afternoon. We didn't have any damage in our complex, but a few local buildings sustained some significant damage and some cars were destroyed by falling debris. Here's hoping today is less rumbly.

Day Camp

2011-08-22T09:00:00.000-04:00

Waverly attended day camp the past 2 weeks at Jill's House. Summers have always been a bit difficult for us. Waverly & I do not enjoy the heat and by the end of the summer boredom sets in. The day camp option was such a treat. Waverly was at JH for 6 hours each day. The zoo brought small animals for the kids to meet, a therapy dog stopped by, a local hippotherapy organization brought ponies, there is a beautiful indoor pool, a gym, craft room, computer lab, music room, musicians come to play for the kids, plus an amazing playground. Each day we pulled into the parking lot, Waverly was all giggles. She knew she was going to have another great day. And each day I picked her up she was all smiles and totally exhausted. Oliver and I were able to take advantage of the time by going to our favorite parks and finishing up school shopping (not his favorite activity, but snacks kept him happy).

I am so thankful to have this organization just a few miles away. Our summer was much more fun for all of us, because of their day camp program.

Another House Update

2011-08-18T22:06:00.000-04:00

We are still riding the short sale roller coaster. Our realtor warned us that this process takes a long time and there are many twists and turns. Man was he right!! The mortgage company who had been managing the short sale sold/traded/gave our case to another mortgage company. This could mean we start all over again or it could mean that the new company picks up where the old one left off. We have no idea. We hope to find out more next week, once someone has been assigned to our case.

It has been over 3 months since our offer was accepted. I had hoped we would close on the house before school started, but obviously that is not going to happen. We were told short sales can take up to 6 months and I suppose that estimate is accurate. I guess that means we are halfway there.....if the bank approves the sale.

Not Ready

2011-08-17T22:04:00.000-04:00

I had a bad day. As I loaded up the kids this morning to take Waverly to Jill's House for day camp, Oliver had a really difficult time climbing into the van. Typically he climbs right up to his car seat and waits for me to buckle him in. Today he just stood there. He moved his grip from the door to the car seat to the driver's seat. He put his foot up and then his knee. He looked confused. Later in the day as we walked back to the apartment, instead of walking right to our door as is his routine, he wandered into the courtyard. Again, he looked confused.

Obviously, I know he has Sanfilippo. However, he is higher functioning than Waverly and therefore my healthy little boy. Compared to his peers his is years behind where he should be. He has never truly uttered a word. I have never heard him say mommy. But I can always count on him to walk ahead of me, while I hold Waverly's hand. He will stop at the sidewalk, so I can walk him to the van. He runs ahead, straight to the apartment door to wait for me. Those little things mean so much. He is such an obedient little boy - my little helper.

Today, I saw glimpses of Sanfilippo. Reminders that things are going to change. I remember watching Waverly lose skills and see the confusion on her face. Little things she could do by herself all of a sudden became too difficult. I saw signs that those changes are beginning in Oliver. I am simply not ready for this.

I positioned his little hands - one on his car seat and another on the back of the driver's seat. I lifted his foot up onto the floor of the van. He remembered and hoisted himself up and into his seat. I buckled him in and gave him a big kiss on his forehead. Well done, Oliver.

Beach Bound

2011-08-14T11:51:00.000-04:00

We took the kids to Rehoboth Beach yesterday. Matt and I were in desperate need for some sand and surf. We knew Oliver would love it, but Waverly isn't a big fan of the water. And the last time we took her to the beach, she wouldn't stop eating the sand. Yuck!! I did a lot of research and found that Rehoboth offered beach wheelchairs for free - first come first serve. We left EARLY to ensure that we would get one. And thanks to a friend, we knew we brought an extra beach umbrella to stick into the chair to keep her shaded. Wavey was happy in her chair looking at some of her favorite books. She also took lots of walks up and down the beach. Oliver loves all things beach. He loved playing in the sand with his shovel and bucket. He also loved running in the waves and going out to deeper water in my arms. We had a fantastic time.

Waverly in her beach wheelchair

Matt and the kids walking in the surf

So happy to be at the beach

Playing in the sand

A squinty smile

We Will Miss You, Erin!!!

2011-08-12T13:39:00.001-04:00

Waverly had her last day of summer school last week. Even though I wrote about it already, I had to post a photo of Wavey and her 1:1 Erin. Erin worked with Wavey this past school year and summer school. She has been a God sent. Matt and I could see that Wavey loved Erin and was being well taken care of by her. I had the opportunity to pop into the classroom multiple times and I was always happy with what I saw. Erin reinforced PT and OT goals that our therapists thought would be useful. She worked tirelessly to keep Wavey moving and comfortable through her swelling knees and pain phase in the spring. She defended her against an unhelpful staff member. And she went far beyond my expectations in making MPS Awareness Day a school wide event. She is moving out of state next week and we are really going to miss her. I love this photo of them. I love that even with the face painting activity, Erin chose to have a purple ribbon "tatoo" on her arm in honor of Waverly. We have been so fortunate to have her and we are going to miss her terribly. It is difficult to watch someone who loves my child so well leave. Good luck in all you do, Erin!!! We love you and will always remember your love for Wavey. Thank you!!

Oliver & the Carousel

2011-08-07T21:54:00.000-04:00

I am not sure if you can see it in his face, but Oliver is scared. And that scared face breaks my heart.

We took the kids to our favorite park on Saturday afternoon. It was later in the afternoon and we basically had the place to ourselves. I love that! This particular park has a carousel in the middle and Oliver loves to ride it. He typically runs to the swings and then makes a beeline for the carousel. We usually ride it a few times before only the promise of a snack makes him release the horse's rein.

We followed a similar pattern yesterday. Swings and then a run around the playground and then over to the carousel. He never knows where to get in line and just stands by the gate surrounding the carousel hoping someone will let him in.

With our tokens in hand, we selected an up & down horse and waited for the bell. Oliver was strapped onto his horse and I was standing next to him for support. Unlike all of our other visits, once the ride started moving he panicked. He grabbed onto my shoulder with both arms and tried to climb off. He whimpered and had a frightened look on his face.

His fear brought back memories of Waverly. All of a sudden, she grew so scared of not feeling secure. She became fearful. Oliver had that same look in his eyes yesterday. It was sad to see. It was Sanfilippo. He was trying so desperately to communicate with me in those few moments of going around on the carousel. All I could do was put my arms around him and tell him it was okay, the ride was almost done.

When we got off he ran off and instead of running back to the gate for another spin he took my hand and walked me out of the park.

Quiet Weekend

2011-08-07T21:18:00.000-04:00

Waverly had her last day of summer school on Thursday. It was circus themed and she came off of the bus with with a pink nose and whiskers. She has never had her face painted before and I wasn't sure if she would sit still for it. Check face painting off of the must do list. We had to say goodbye to Wavey's 1:1, too. We took her out for lunch on Wednesday. She is moving out of the area and we are so sad to see her go. She has been a God sent. She is amazing with Wavey and her love is evident.

We had a quiet weekend at home, complete with a playground visit, pool time and the farmer's market. Still no news on the house, but we did receive a little bit of good news. Nothing to report, but fingers crossed that things are moving forward.

Matt is Running!!

2011-08-04T20:15:00.000-04:00

Matt and I are writing this letter to you on behalf of very special children. Jill’s House is a local

organization dedicated to providing care and support to children with special needs and their

families through overnight respite care. For those of you who read my blog, you are well aware just how special Jill's House is to our family. Did you know?

• More than 80% of marriages of parents of special needs children fail

• 61% of parents of special needs children report respite as an unmet need

• Respite programs across the country often have waiting lists of up to 500 families

Since opening in October 2010, Jill's House has provided over 90 families with respite

care. Waverly has had the opportunity to spend a weekend there in May and she has enjoyed a few weeks of their day camps this summer. When Oliver turns 6, he will also be able to have adventures at Jill's House.

Matt is running the 36th Marine Corps 10k in Washington, DC on October 30th, and we

would like to ask you to help us reach our goal of finishing the 10K

all while supporting Jill’s House. The financial support that he receives will directly help Jill’s House

provide respite to over 600 children per month.

We are grateful for you taking the time to read this, and for your consideration in

helping me raise awareness through “Team Jill’s House 2011” by making a contribution.

If you choose to make a contribution, you can click HERE to make a tax deductible donation.

Please help us reach our goal of $750. I hope we can greatly surpass that goal and give back to an organization that has given us so much.

My Little Student

2011-08-02T22:48:00.000-04:00

I am so proud of Oliver. He is doing great this summer. He is riding the bus to and from school without any tears. He seems excited about going each day. I have been getting lots of positive reports from his teacher, who will also be his teacher in the fall. She sent me this adorable photo of him working on fine motor skills. I love that his little tongue is sticking on in concentration. He is such a good little boy.

House Update

2011-08-01T14:54:00.000-04:00

I had a personal goal of finding out about the short sale today. Unfortunately, still no news. The BPO (Broker's Price Opinion) has yet to be completed by the bank and nothing can move forward until that it done. I am beyond frustrated with this process. I was warned that short sales are difficult and time consuming, but I simply didn't think it would be this rough.

Thanks to all of you who have donated to "A Hundred For A Home", in order to make a home purchase possible in NoVA. I hope to share good news with you soon. Please send us your positive energy, prayers and thoughts.

American Girl

2011-07-28T20:14:00.000-04:00

Our local mall just got an American Girl store. I would have loved that store when I was a little girl. I remember seeing the catalogs when Waverly was a baby and thinking that one very special day, I would take her in and let her pick out her very own doll. I would treat her to a lunch at the cafe with her doll in a highchair next to the table.

I hate walking by the store and I do all I can to avoid it. However, the mall is flooded with little girls carrying their dolls. I can't escape the bright red bags. That store embodies the loss of a dream for me. I suppose it is silly to think an over priced toy can cause such sadness, but it is a reminder that things just haven't turned out as I had hoped.

Waverly & I were at the mall together this afternoon. We had a few errands to run and fortunately we didn't have to venture near the AG store. Yet when we left, we drove right by it. There is a nice patio area for the cafe and there were a few moms and little girls sitting outside enjoying lunch. The dolls were in the highchairs with little place settings. I cried. I looked in the mirror and saw Waverly happily chewing on her Chewease in her car seat, oblivious to all that she is missing.

One Car Family

2011-07-26T22:20:00.000-04:00

We are officially a one car family again. Our Ford Explorer was in need of some very expensive repairs, so we opted to donate it. We gave it to Wheels for Wishes. They are associated with Make-a-Wish. It is a wonderful way to give back to an organization that granted both Waverly & Oliver a wish. I want to take the opportunity to thank my Aunt Donna and Uncle Ed for giving us the Explorer. When we were back in the US and Waverly was diagnosed, we knew we were going to make the move back to the States. They had a spare car and gave it to us. It was a gesture that made our transition home so much easier. And thanks to Uncle Guy and Aunt Tari for getting the car from Idaho to PA.

Wondering

2011-07-24T21:11:00.001-04:00

I miss Waverly's voice. I hate that I never really had the opportunity to hear Oliver's. I often wonder what they would say throughout the day. Would they ask for more grapes or tell me they really don't like goldfish? Would Waverly still call me Mommy or would she have transitioned to Mom? Would Oliver ask to go swimming each and every day? Would they tell me that something hurts or they are scared?

I carry on constant conversations with them. I always ask them questions about their day, answering for them to keep the chat moving along. I tell them that I love them constantly. Over and over again - whilst cuddling on my lap or when putting them to bed. I always want them to know the sounds of mommy telling them they are loved.

This has been a difficult month. I have started getting migraines, I think in part caused by stress. (MRI was fine, so no worries.) Wavey's swallowing has grown a bit worse. We have to really assist her in order to get her to drink from a straw. It takes a lot more time and effort to be sure she is hydrated. I called her GI doctor in order to have another swallow study done, to assess the changes since November. Oliver is doing well. His hands are now constantly in his mouth. His pacifier no longer sustains him as well as it used to. I remember the insatiable urge Waverly had to put everything she could find into her mouth. I can see that same desire developing in him.

Tonight, I simply wish things were different.

House Update....Again

2011-07-24T20:28:00.000-04:00

Still no news on the house. It has been over 9 weeks since our offer was accepted by the sellers. The banks have yet to make a decision and we are forced to wait. We knew going into this process that this would be a long wait, but I didn't realize how impatient I would become after 2+ months. I had a goal in my mind to close around Labor Day, allowing us time to move from our apartment to the house before our apartment lease is up. I am no longer hopeful that is going to happen. We are continuing to look at other houses that meet our needs, as they come on the market. Thus far, we haven't found anything to rival our choice. It truly is a great fit for our family. Now to figure out how to encourage the banks to move a bit quicker....

Yellow Light

2011-07-20T20:58:00.000-04:00

I am so thankful for Extended School Year. It has been so nice to have a daily routine again and the kids both enjoy being in the classroom. Oliver is having a great time. He has the teacher he will have in the fall and she is fantastic. He has been happily getting on the bus each morning - no tears. Waverly is also having a wonderful experience. The past 2 years, I haven't been thrilled with her experience. This year is so different. Her 1:1, Erin, is with her for the summer. She is AMAZING and we are so lucky to have her. And Wavey's teacher is equally lovely. I was able to visit her classroom last week and she is with a wonderful group of teachers & students.

Erin told me the cutest story about Waverly today and I just had to share. They use yellow and red lights as warning for the kids' behavior. One of Wavey's little friends got a yellow light for something. A few moments later, as he was sitting by Wavey, she tapped his head 3 times. He went running over and grabbed the yellow light picture to give Waverly a warning. So cute!!!

Handsome Boy

2011-07-17T21:17:00.000-04:00

Oliver enjoying an ice cream cone, thanks to Grandma.

A very happy Oliver on the swings. I love that smile.

Time

2011-07-17T21:04:00.000-04:00

I took this photo of Waverly on Saturday at my Nana's. Wavey has been *in love* with her Wiggles guitar lately. She can still push the buttons and hear some of her favorite tunes. She got this toy when she was 2 for her birthday from a friend. She loved it and I can picture her bopping around in our living room in Bexley to the music. After she outgrew it, I held onto for Oliver. And now here we are 5.5 years later and it has become a favorite once again.

Time seems to stand still with Sanfilippo. Development plateaus and then we begin to go backwards. The kids grow older, yet their development declines. The differences are growing more startling between my life and my friends. I feel perpetually stuck in baby phase, while they are attending baseball games and dance recitals.

VO*TE

2011-07-14T20:33:00.003-04:00

It is yet another opportunity for you to help us fund research for Sanfilippo. The parent group, Team Sanfilippo, is competing for a $250,000 grant from Vivint. We are currently holding onto the second place spot, but we still have weeks of voting ahead of us. It is easy to vote, as long as you have a facebook account. Simply *like* Vivint. Then click this link: http://www.vivint.com/givesbackproject/charity/1471 or search for Team Sanfilippo in the Vivint Gives Back Project. Cast your vote. It is that easy. Then each day, vote again - it takes mere seconds. Share the link on your wall and ask your friends to join you.

People are always asking how they can help. This is an easy and free way to help our family and all of the other families who have children with Sanfilippo. There is currently no treatment available to our kids, but there is some exciting research in the field of gene therapy.

You can vote once per day thru 8/27!!

More Changes

2011-07-14T20:31:00.000-04:00

I recently wrote about the changes we are seeing in Waverly's mobility and movement around the apartment. This week, we have seen a lot of changes in her ability to swallow. During lunch today she choked twice. Choking so scary that I had to pound her back to clear her airway. We have adjusted her diet to soft foods and dissolvable solids, but I gave her a few blueberries with lunch. She loves blueberries, however she no longer chews them and just tried to swallow them whole. Waverly has always found such joy in food. She loves to eat. I hate having to adjust her diet once again and remove some favorite foods. Her blueberry intake will just have to be mashed into smoothies.

House???

2011-07-10T19:52:00.000-04:00

My parents came down for a visit this weekend. We had an opportunity to get back inside the house, since the renters have moved out. My step-Dad is extremely handy, so it was nice to get his perspective on the place. Everything looks really good - no major concerns to speak of. Just some minor changes here and there. I took a bunch of photos of measurements. We still have a lot of hoops to jump through before we can call this house our home, but we are on our way.

Front Door

Living Room

Kitchen

Bedroom Example

Finished Basement/Family Room

Downstairs Bath

Kitchen to Living Room view

Back Yard

Back of the house - big yard!!

Slowing Down

2011-07-08T15:12:00.000-04:00

The past few weeks we have noticed a significant change in Waverly. She use to wander, walking from her bedroom to the living room into our bedroom if we were in there. She would go to the gate in front of the kitchen or run to the door when Matt would come in from work. All of a sudden I realized she is much more stationary. She prefers to stay within the living room, moving from floor to couch and back again. She no longer wanders into her bedroom to page through her favorite books. I don't find her up on her bed snuggling Baa-Baa. Gone are the days of her "stalking" me whilst I am in the kitchen, hoping for a treat.

You would think I would have noticed the change. But sometimes in the day to day life with Sanfilippo, I neglect to notice the obvious. I have been preoccupied with Oliver; watching him ever so closely for signs of regression. I missed what is happening to my little girl.

The one thing I have learned in my three plus years with Sanfilippo, is that sometimes these changes are temporary. In a few weeks time I may find her plopped in front of her bookshelf once again. My fear is that this is a new stage, a new normal with which we need to adjust. I remember reading about children slowing down as the disease progresses. I thought that sounded wonderful at the time - dealing with a 4.5 year old girl who could no longer sit still and thought running away was the silliest game. The mania stage was so difficult. I miss it now. Wavey still loves to run away when we let go of her hand, but she typically only makes it a few steps before she falls or runs out of energy. I miss that devious little laugh, as she pulled away so we would chase her.

I suppose this slower phase means more snuggles, more time spent reading our favorite books and cuddles during movies. I will need my energy, because I have a 4.5 year old little boy who is going to begin the manic stage soon. Best rest up.

House Update

2011-07-06T20:41:00.000-04:00

A negotiator has finally been assigned!! In fact, our file is with the second phase negotiator. The banks are waiting for the BPO (Broker Price Opinion) and it should be in any day now. There are still a lot of things that have to fall into place, but we are moving forward. It is a great little house and I hope it will one day be ours.

Back to School...Already

2011-07-05T21:39:00.000-04:00

This morning I packed up Oliver's lunchbox and backpack for his first day of summer school. I am so thankful we live in a county that offers extended school year. For the next 6 weeks he will spend his mornings in one of our local elementary schools. He will work on a few select IEP goals and socialize with some other preschoolers. In a wonderful surprise, his summer school teacher is actually his teacher for the fall. She knows Oliver already, which is a huge relief. He has difficulties with transitions and new environments, so having a familiar face is a huge blessing.

Oli was a bit surprised when I took him out to the bus this morning. He is used to riding with Waverly. However, he got right on with minimal tears. He is such a good boy. The report from his teacher was positive. He had a great day.

Wavey starts her 4 week program next week. I love getting back into a routine after a few weeks off.

Exploring Holland

Offer Submitted

*Not* Meant To Be

And We Are Off!

WE GOT THE LETTER!!!!!

Waverly's Weekend Adventure

Oliver's Day at the Zoo

Oh Oliver!

Surgery Scheduled

Waiting

Waverly & the Puddle of Drool

Once Again Yet Another House Update...Again

Photo Memories

House News - Almost There

PA Trip

Hilton Head

Holding Hands

Oh Oliver!!

Weekend Adventures

House News

Christmas Blues

House Update

Cruiser

Happy Thanksgiving!!

Waverly's Weeknight Adventure

Changes

A Day in the Life of Oliver

VFSS Complete

Happy 8th Birthday, Waverly!!

Reflections

Disney World - Act 7

Disney World - Act 6

Disney World - Act 5

Disney World - Act 4

Disney World - Act 3

Disney World - Act 2

Disney World - Act 1

MIA

School Photos

**gulp**

Trick-or-Treat

Run! Matt! Run!

A Reminder

Mr. Juice Bear

IEP Meeting

Halloween Parade

Waverly's Heel Cord

Oliver's Field Trip - Photos

Oliver Scootering

Oliver & His Scooter

Field Trip

Busch Gardens

Bad News

Dragon Mom

Yet Another House Update

Big Boy

New Orthotics

Embrace the Chewy

Prayers for Megan

Quiet Weekend

**House Update**

Ma-Ma

Memory Made

Drowning

All Rides, All Weekend

Back-to-School Night

Giggles & Tears

The Lift

Oliver's Last Year of Preschool

House News

First Day of School

NY State Fair

The Questionnaires

Natural History Study - Take 3

A Week Off

Closed Carousel

Great First Impression

Earthquake!!

Day Camp

Another House Update

Not Meant To Be

gulp

House Update

VO*TE