Meet the McNeil Family

Meet the McNeil Family

Sunday, December 30, 2012

Happy Birthday, Oliver!!

My sweet little boy turned 6 years old today. As usual, his birthday seems to get lost in the holiday shuffle. No school chums to celebrate with over cupcakes, not at home for our typical celebration spots. He doesn't mind in the slightest and is happy to simply watch some "Mickey Mouse Clubhouse" and have ice cream.

Happy Birthday, sweet Oliver!!! In a few short days we will celebrate YOU at Disney World.

Tuesday, December 25, 2012

Merry Christmas!!

Christmas has been a very difficult holiday for me since Waverly & Oliver were diagnosed almost 5 years ago. This year I was finally able to put aside all of my expectations and just relax. Christmas Eve was just like any other night, except we had a delicious evening of appetizers. Christmas morning we all piled into our bed and watched cartoons under the covers. I made some yummy monkey bread for breakfast. Instead of trying to get the kids interested in wrapped presents under the tree, I unboxed the few gifts and had them out ready for play in the family room. We ended the day hosting my cousin and her family for dinner.

The kids are nestled all snug in their beds. The puppy is snoring on the kitchen floor. I keep smiling. Christmas never looks like the movie version. And our Christmas day was much different than all of my facebook friends' walls filled with photos of kids tearing into presents. Yet we were all together. That is what matters.

Sunday, December 23, 2012

Jill's House Got a New Client

Monday was a day we have all been waiting for. Oliver was *finally* able to stay at Jill's House. Since he turns 6 this month, he is eligible. He has been desperate to get through their locked doors and discover the playground, pool and bouncy houses. The day finally arrived. JH staff arrived at their school at the end of the day to pick up the kids for their school overnight. Oliver was thrilled to finally board the bus and easily climbed up into the front row. I couldn't believe how easily he separated from me, off on his own adventure. I heard wonderful reports from the JH staff. He had a fabulous time and fell asleep the second his head his pillow.

Matt and I spent part of the evening doing the interview with NPR. We then grabbed a quick dinner and headed home. We were both asleep early and excited to sleep the entire night without interruption.

Local NPR Interview

You may remember the wonderful interview that our local NPR station did last spring. The show "Metro Connection" found out about Matt's book and wanted to talk with him about our story. You can still hear it by clicking HERE.

The reporter wanted to follow up with our family for her end of the year show. We met her at Jill's House last week, on a night both Waverly & Oliver were staying there. We chatted about all of the changes over the past 6 months and updated her on our family. Once again she put together and beautiful interview which aired in the DC area Friday and Saturday. You can listen HERE.

Saturday, December 15, 2012

De-Grinching

I am sad. Deeply sad. I have cried every day for the past few weeks sad. It is that time of year. Birthdays and holidays. This time of year always points out how quickly time has flown by and just how different my life looks from what I had hoped. I have tried different tactics to get through this season. I have tried my best to pretend and have the "perfect" storybook Christmas. This always ends with disappointment. We left town last year which worked fairly well. 

This year I am determined to be as realistic as possible. Waverly and Oliver have no concept of Christmas day being special. There is no anticipation of presents left by Santa, no waking early to rush to see what is under the tree. So I am embracing what they do love. Twinkling lights in every room. A few gifts, purchased in the toddler section. I am going to make a delicious breakfast, because Oliver's love language is food. I see lots of Mickey Mouse Clubhouse episodes being watched in our pjs and maybe a walk around the neighborhood with Watson.

I keep having to remind myself of these realistic expectations. Disappointment and sadness will still creep in. However I realized that Sanfilippo cannot take my Christmas spirit away. It tried, but I refuse to allow it. Waverly and Oliver's little faces staring at the shining Christmas lights were just the reminder I needed.

Friday, December 14, 2012

Mommy Son Trip


Oliver and I flew to Minneapolis last week for his final visit in the Natural History Study for MPS III A. (Wavey was a bit under the weather, so she will go in the spring.) We always love these trips. It feels great to be doing something - anything to further Sanfilippo research. Plus we are able to see some old friends, ride the carousel at the Mall of America and enjoy the city. Oliver was a wonderful little traveler. It was actually a lot of fun to have an adventure with him.

The first day is filled with developmental assessments. Since our last visit one year ago, he has lost about 7 months of cognitive development. He stayed about the same in his gross motor skills, but we saw the most loss in fine motor. The results were expected, but that certainly does not make it easy to hear.

He did well with all of the medical testing done under general anesthesia. The only issue was he gets so nauseous when he wakes up. We actually ended up in the ER that night, for another IV bag of fluid and some additional medication to help stop the vomiting.

I am so glad Oliver was able to participate in the Natural History Study. I hope the information he provided over our 4 visits will give future doctors and researchers a much better understanding of the syndrome and how best to treat it. It is sad that 2 years later, we don't feel that much closer to a cure or effective form of treatment. I no longer believe Waverly or Oliver will benefit from the research. However it is my hope that future families will not have to watch their children regress and die much too early, thanks in part to Waverly & Oliver's participation.

Christmas Spirit


We are getting into the Christmas spirit here in Virginia. The mantel has been decorated, stockings hung, and puppy resting comfortably on the hearth. (It is his new favorite place to sit.) We are so thankful to have a home to celebrate the holidays this year.

Wednesday, November 21, 2012

Waverly is 9!!!


My sweet girl turned 9 years old last week. She had a day full of celebrations. She started her morning with a birthday party in her ID classroom. I outfitted her with a birthday crown, because it seemed appropriate. After lunch she had another birthday party with her 3rd grade class. I brought in cupcakes for all of the kids and they presented her with a lovely birthday card.


All of the kids signed the card and there were a few photos inside of Waverly with her classmates. It was one of the sweetest things she has ever received. A huge thank you to her 3rd grade teachers and her students for doing this for Wavey.

We ended the night at a favorite local diner, where Waverly had a birthday milkshake. We got her a little wind up toy that plays music and has some movement she loves it.

I anticipated an emotional day, but instead it was full of love and celebration. I am so thankful she has so many people who love her at school and wanted to celebrate her in such special ways.

Happy Birthday, Waverly!! I cannot believe you are 9 years old.

Thursday, November 15, 2012

Thanksgiving Feast


Yesterday was a Thanksgiving Feast in Oliver's kindergarten classroom. All of the parents were invited to spend an hour in the classroom to celebrate. When I arrived, the kids were all finishing up their morning meeting in the front of the room. Once all of the parents were there, the kids each stood up to finish the sentence, "I am thankful for.....". The answers were adorable - friends, mommy & daddy, kittens, and math. As they neared the end the teacher asked who else needed to give their answer. It was so sweet to hear the kids say that Oliver still needed to take his turn. Oliver was busy paging through his Dora book, so his aide said he was thankful for Dora books. The students then all played a little game and then the feast began.

As the teacher was giving the feast instructions to the kids, I began talking with a mom. Her little girl always stops to say hello to Oliver each morning. She is so sweet and I wanted to let the mom know just how much it means to me to see Oliver befriended in that way. The mom was awesome and is (of course) a former special education teacher. She said she was so excited to learn about Oliver being a part of their classroom and believes fervently in inclusion. I was beyond excited to hear a fellow parent talk about the ways Oliver can have a positive impact on the classroom and how we need to see more of that.

I have felt very removed from the mainstream aspect of school. I don't think Waverly was ever included in a kindergarten activity, but slowly over the past few years the school has done a much better job of providing a more inclusive environment. Oliver's kindergarten teacher has done a great job of having Oliver be an active member of the class and her aide (who is a former preschool aide who worked with Oliver his last 2 years of preschool) is doing a great job with her knowledge of Oliver.

I was so encouraged by this mom. At times I sense distance from many of the other parents. I have to remind myself that it is most likely a lack of understanding rather than an intentional avoidance. I hope to become more engaged with the other parents to change that. I hope the other parents can see the valuable influence inclusion can have on their own child.

Watson the Graduate


This little guy has been keeping me very busy and is one of the reasons blogging has fallen off my radar the past few months. He has been with our family for about 2 months and last week he graduated from Puppy Kindergarten - a very basic obedience class. He was the youngest pup in the class and it showed, however he did great. We all have a lot to learn, but we feel like we have a much better idea on how to raise a puppy into a well behaved dog.

I have grown to love having him at home with me. He provides me with some company and I talk to him way too much throughout my day. We take walks together while the kids are at school, which has proved to be a wonderful way to meet our neighbors.

He is still learning how to behave with the kids. He is obsessed with their chewy tubes and tries to take them from the kids constantly. He is learning to stay down and not jump up. Waverly loves him and just wishes he would stop wiggling long enough for her to pet him. He has never snapped or growled at anyone and allows Wavey to poke, pull and grab him. He knows it is all done in love.

Oliver - Kindergarten


Oliver's kindergarten school picture

Waverly - 3rd Grade


Waverly's 3rd grade school picture

Sunday, November 4, 2012

Halloween 2012

Our first Halloween at our new house was so much fun. My cousin and her family were trapped in DC, thanks to Hurricane Sandy. They were with us all week and we had such a wonderful time with them. The kids got to trick-or-treat Virginia style (they are from Washington state). We carved pumpkins and hit Target for some last minute costumes. Rey picked a Thor costume. Alex went old school with the classic ghost costume. Oliver was a furry green monster again (warm and toasty on the chilly night) and Waverly was an adorable ice cream cone.

Wavey and I stayed back to pass out candy, while the other hit the neighborhood for some trick-or-treating. They came back an hour later with loads of candy. Unfortunately our street isn't the hand out candy kind of street, so we didn't get many kids at our house. Next year we will have to camp out in the drive way with some lighted decor to draw the kids to the house. It was a wonderful way to celebrate our first Halloween.


Thank You!!!

Thanks to all of you who sponsored Matt's 10k run for Jill's House last weekend. He was able to raise over $3866 for this wonderful organization!!! I am so proud of him.

Sunday, October 28, 2012

10k For Jill's House

Matt is running the Marine Corps Marathon 10k to raise money for Jill's House. Please consider supporting his run by making a donation to Jill's House. If you read my blog, you know how much our family has benefited from this incredible local organization that supports families who have children with special needs. You can donate HERE.

Thanks!!!

Oliver's Tears


Sweet little Oliver has had a very rough week. It all started on Monday. He was just...off. He woke up crying, which is very atypical. The entire day he was whiny/crying, couldn't settle and was quite manic. Nothing seems to capture his attention and he was unable to focus at all. He cried when he put him to bed and Tuesday started much the same way. He has OT & PT in the mornings and his therapist were startled to see him behaving in this way, because it is simply so unlike him. I hardly sent him to school last week, because he was so upset. I took him to our pediatrician and she couldn't find anything wrong.

He has been happiest strapped into his car seat or wheelchair. We took a lot of walks with Watson while Wavey was at school. Oliver really enjoying watching Watson walk next to him. And Watson did a great job staying right next to the chair.

I remember this behavior in Waverly a few years ago. It usually signified a regression. I saw the crying and mania as confusion. Their little brains are becoming more and more effected by the GAG build up. I can't imagine how scary it must be to not be able to form a word or all of a sudden have difficulty walking.

We are tying to so things that keep him as happy as possible - lots of car rides and walks.

See Saw

Waverly & Oliver's ID class took a field trip to Clemjontri - our favorite accessibly playground. Oliver spent most of the morning climbing up the stairs, crossing bridges and sliding. Waverly did a lot of walking, thanks to the amazing Chao-An (her aide). She also settled into the see saw for awhile and seemed to really enjoy bouncing. I couldn't capture a smile, but it was there.

I am continually grateful for a wonderful school environment for the kids and staff that truly love my kids. This has been such a great school year thus far.


Oliver's First Kindergarten Field Trip

Oliver's kindergarten class visit a local pumpkin patch outdoor playground extravaganza. He wore his very stylish white tee decorated with pumpkin stamps. He loves playing on the toy train, the slides, climbing on the hay bales, hay ride and selecting a mini pumpkin. Although the bus ride there and back may also have been the highlight. His ID teacher accompanied him and sent me photos throughout the trip. He had such a wonderful time.


Oliver & His Scooter

Last weekend we spent some time cleaning out the garage, so we can fit the car inside as inclement weather approaches. Oliver spotted his scooter and was very excited to take it for a spin. He did a great job helping to propel himself forward. However his favorite way to ride is both feet on, with mommy pushing him. We had a great time riding down the driveway and on the sidewalks in front of the house.


Monday, October 15, 2012

My Boys

I love this picture of Matt, Oliver & Watson - my boys!!


Apple Picking

We visited our favorite orchard a few weeks ago on a beautiful autumn day. We picked tons of apples and made sauce & pies. Oliver loved riding around in the wagon.


Waverly, Oliver & Watson Update

I can't believe how long it has been since I have updated the blog. Our new puppy most definitely has taken up a lot of my time, but I think we are settling into a new routine and hopefully I will be able to blog a bit more regularly now.

Watson is doing well. He has been with us for about 5 weeks now. He is almost completely potty trained and has been sleeping through the night for a few weeks. This past weekend was a bit rough for him. He picked up some rare parasite and got incredibly sick. He is still recovering, but seems to be doing better after a few days of antibiotics. He loves to play fetch and go on walks. And he is learning basic commands, thanks to a puppy kindergarten glass we attend together. He gets very excited around the kids, but hopefully with additional training we can work on his behavior with them. Waverly adores him and Oliver is slowly getting used to him.

Oliver is doing quite well. I am incredibly proud of how easily he adjusted to school this year. It is a new classroom and teacher, in addition to a full day. I was worried it may be too much for him, however he seems to be having a wonderful time. Over the summer we noticed a marked shift in his behavior - more easy going nature and easily separating from us a summer school drop off. Thankfully, the behavior changes have remained. He is happy and smily at school. He seems to love PE, recess and music the best (and of course snack time & lunch).

In other Oliver news, we recently started the paperwork to register him for stays at Jill's House. Once he turns 6 in December, he will be able to take advantage of all they have to offer. He is going to be over the moon excited to break through those doors to the playground and indoor pool. I am just not sure what Matt and I will do without both kids for an entire weekend. 

Waverly has adjusted beautifully to her g-tube. We are actually taking her back to see the surgeon on Thursday to have the tube replaced with a longer one and to have some granulation tissue treated. Hopefully this can all be done without sedation, but we are having some minor issues with the tube being too tight. We have put together an easy feeding schedule that seems to be working for everyone. She gets the majority of her calories during the night whilst she is sleeping and then a short meal around lunchtime at school each day. I am so thankful for a classroom team that is comfortable and competent when it comes to her g-tube.

She has definitely been slowly down over the past few months. She can not longer go from a sit to stand position on her own. If she is on the floor, she simply isn't strong enough to get back on her feet. And even when sitting in a chair she can no longer pull herself to standing. She is still walking - a few steps independently, but primarily with adult support. She will hold my hand and take short walks around the house or yard. Her sweet disposition remains and she is the happiest little girl you will ever meet.

Sunday, September 30, 2012

Beautiful Autumn Day

This afternoon we drove out into western Virginia to one of our favorite family farms. Apple picking is a must do activity each year. We picnicked, picking apples and shopped in their market. The highlight for Oliver was playing on their playground and riding around in the wagon. Waverly simply loved being outside and seeing so many people. For Matt and I, the best part of the trip was the dozen freshly made apple cider donuts we bought. We have a 1/2 bushel of delicious red stayman and ida red apples - perfect for apple sauce and dumplings. The house is going to smell fantastic this week. And we were able to make another fun family memory.


Saturday, September 29, 2012

Running for Jill's House

Matt is once again running the Marine Corps 10k in October with Team Jill's House. His goal is to raise at least $750, although last year he was able to raise $3000 for this VERY special organization. As many of you know, Jill's House has been an incredible blessing to our family over the past 2 years. Waverly goes there for day camps during the summer and weekend stays throughout the year. Oliver will be able to stay there beginning in Januaray, after he turns 6. Please take a moment to read more about Jill's House HERE.

If you want to support Matt's run to raise money for this fantastic organization, please click on the link below to donate easily online. Thank you!!

Thursday, September 27, 2012

Memory Boxes

I have been saving almost everything the kids make at school, camp, Jill's House, where ever.  Their closets are filled with plastic bins, decorated with their names in puffy stickers. I am running out of closet space. So I had the brilliant idea that I would go through the bins and keep only those things most precious - with their handprints, photos or those items that are originals (not done by the teacher using hand over hand techniques). I opened up Waverly's closet this afternoon and gazed up at the stacks of bins, full of memories and treasures. I couldn't do it. I couldn't even pull down one bin and peek inside.

A task for another day perhaps.

I am fully at home in our little Sanfilippo world. I feel cozy here. Just me, Matt and my sweet babies. I used to long to return to the days prior to diagnosis. The bliss of ignorance. Now I simply want to hold onto each Sanfilippo filled day, because at least we are all together and safe. The future is beginning to weigh heavier on me each day. November is just around the corner. Waverly's 9th birthday. Oliver turns 6 the following month. I need time to slow down.

My Little 3rd Grader

Waverly started 3rd grade last Monday. She did half days for the first 3 days of school and has been full time since then. I spent some time in the classroom and meeting with the school nurse to make sure everyone was comfortable with her g-tube. After some practice sessions last week, everything has been going smoothly. Waverly has a 2.5 hour tube feed in the afternoon at school. I think she is thrilled to be back among her friends and teachers. She is a very social little girl who loves the attention she receives from everyone there.  I think if not for Watson, I would be a bit lonely. I thoroughly enjoyed having her home with me for the first few weeks of school. How is she already in 3rd grade?!


Watson


This adorable little guy has been with us for exactly 2 weeks (hence my lack of blogging - puppies are a lot of work!!). Watson is an awesome 11 week old golden retriever puppy. He and Matt bonded instantly. I am a definitely falling in love. Being home with him means more work for me during the day, however it certainly is fun having a little companionship while the kids are at school. And Matt has taken over the difficult task of middle of the night potty breaks. The kids are still trying to figure him out. Oliver has yet to really notice him, except for a many times he trips over him because Watson likes to follow Oliver. Waverly loves the puppy, but the puppy loves Wavey's chewy tube. Watson gets  excited around the kids, so we are still trying to work out their relationship.

Friday, September 14, 2012

Second Week

Oliver had his second week of full day kindergarten. He is doing so well!! His ID teacher spoke with his kindergarten class on Tuesday morning. The kids had a lot of questions about Oliver, so she went in to explain things to them. It was very successful and I think Oliver is going to have a much better time among his peers. In fact, this morning while dropping him off at school, a little boy came over to say hello to him and gave him five. I was beaming ear to ear and almost moved to tears. That little boy's parents are getting a thank you note from me.

Waverly was home with me again this week. I think we have settled into a schedule that works for all of us. We met with her surgeon on Wednesday. Everything looks fairly good. She has some granulation tissue near the g-tube. We started using some topical steroids and hopefully that will clear it up. The doctor was also concerned by how "tight" the tube is - it is pressing into her skin. Typically Mic-Key buttons are replaced every 3 months. We think this will be replaced closer to 1 month. Waverly is fussing a lot and I think it is the tube hurting her skin. We have to allow the stoma to heal though before we can replace it. Poor girl has been through so much.

Sunday, September 9, 2012

Waverly Update

I thought I would update everyone on Waverly. She is recovering beautifully. The most difficult aspect of the g-tube seems to trying to settle into the best schedule. Since the tube is brand new and she is still adjusting to the formula, she has to eat at a very slow rate. (This will slowly be increased.) We opted to try overnight feeds, since it drastically limits the amount of time she is tethered to the feeding pump throughout the day. We want her to be able to be up and moving as much as possible. After some adjustments, we have found an overnight schedule that seems to work well for all of us. During the day she only has to be hooked up to the pump once for a few hours. And we are able to supplement some food orally throughout the day.

Waverly seems quite happy and satisfied. I am actually surprised just how content she is, however I think she was often hungry before and just unable to safely eat enough calories. Her g-tube is healing nicely and thus far we haven't had any complications.

My mom came down for a few days last week. Wavey was thrilled to have Grandma around. I snapped this photo at our favorite frozen yogurt spot. You can see just how happy Wavey was to have her Grandma here.


Oliver is a Kindergardener!!

Oliver had his first day of Kindergarden on Tuesday. We were able to snap a few photos of him going into school. Of course, his big blue chewy tube was blocking his face in every picture. He and Waverly are in the same classroom. They are in an ID (intellectual disability) classroom with 3 other children. They also join their same age peers at certain times throughout the week. In the photos, he is holding hands with Chao-An. She is Waverly's 1:1 and a wonderful addition to their classroom. Since Waverly is home recovering from surgery, Chao-An has been able to get to know Oliver better and work with him adjusting to a new program.



Monday, September 3, 2012

Kindergarden & 3rd Grade

It suddenly hit me that tomorrow morning I will have a 3rd grader and a kindergardener. How did that happen?! It wasn't until tonight that I really began to process this fact. I couldn't help but wonder what if there was no Sanfilippo and they were typical kids preparing for their first day of school. Sweet Waverly would be thrilled to be back in the classroom with her friends. She would love to tell her teacher all about the books she had read and her summer adventures. Handsome Oliver would be excited about school, but definitely nervous. He would be a bit more timid and on a countdown for lunch and recess. He would find comfort in his big sister's guidance.

I am sad tonight. Sad that my kids school supplies are diaper and wipes, lysol spray and tissues. No crayons or composition books. No freshly sharpened pencils or folders so carefully selected. I am jealous of all of those families who experience life so differently than I do.

Unfair I know, but natural. I have come to realize that it is inevitable to wish things were different. And sometimes I have to allow myself to drift away in wonder of how things could have been. I have to mourn all of those hopes and dreams I had for my children.

As we tucked the kids into bed, a *new normal* is beginning to take hold. Waverly's room now has an IV pole in it, so we can hook up her feeding pump at night whilst she sleeps. Each time I pop in to check on her the yellow glow of the pump lights up her sweet face, arms crossed over her chest hugging her Baa-Baa tightly. She is so beautiful. She is so brave.

Tomorrow morning I will drop Oliver off for his first day of Kindergarden. (Waverly will be home with me for at least another week as she recovers from surgery.) I will definitely cry. Time is moving much too quickly.

Watson


Meet the newest member of our family. He is a very handsome 8 week old golden retriever puppy. His name is Watson.

Waverly's favorite part of her time at Jill's House is always when Titus the therapy dog (also a golden retriever) comes to visit. She is all smiles and giggles when he is around. She loves to pet him, rub her feet in his fur and watch him fetch and run through tunnels. Further proof that a dog was in our future

Once we moved into our house, we knew we were ready. We visited rescues and shelters, spoke with breeders and did a lot of research. There is a local dog school that was recommended to us for therapy training, we simply needed to find the *right* dog. Thankfully, a friend from high school saw my posts on facebook about getting a puppy. Her mom has several golden retrievers who are therapy dogs. Her mom contacted me and offered to help us find a dog. Her friend is a breeder and had 1 puppy left in her current litter. He tested high for temperament and she thinks he will be the perfect puppy for us.

He will be joining our family in about 10 days. He was born in Boston and will be making his way to us, with the help of some very kind people.

Watson is going to bring so much joy into our lives. And a bit of normalcy that we so desperately need right now.

Saturday, September 1, 2012

Brave Girl


A new favorite photo of Waverly & I. Matt snapped this just a few minutes before her surgery. I love her big, bright smile. She is such a good patient.

Friday, August 31, 2012

Open House


Yesterday was the kids' Open House at school. They will be attending the same school they have been at for the past few years. Waverly has the same teacher as last year and in BIG news, she still has the same 1:1. Chao-An has been wonderful and Waverly was all giggly when she saw her. Given the g-tube this year, I am so thankful to have some continuity going into the next year. Oliver is starting kindergarten this year!! He is actually going to be in Waverly's classroom, along with 3 other students. He is going to miss preschool, especially Miss Nina. However, I know he will be free to visit her often. We were also able to meet the third grade and kindergarten teachers who will also be working with the kids. Both seemed enthusiastic about having Wavey and Oli joining their classes.

I can't believe school starts next week!!

Becoming a G-Tube Pro

It has been a very long week. Thankfully, Waverly is doing great. Her first night in the hospital was rough. She was in a lot of pain, but the nurse was wonderful and finally helped us get her to sleep. Tuesday we were able to slowly start formula through her tube. She tolerated it well and by Tuesday afternoon only needed Tylenol to alleviate the pain. Wednesday was a much better day. I was given multiple lessons on how to take care of the g-tube and by the evening they discharged her.

She was so incredibly happy to be home. She and I both slept so well (hospital bench-beds are not comfy!!). Thursday was my first day in charge of the tube. I am finally comfortable with it, but it was difficult getting all of the calories in her. Given the dose we can feed her, it would take us 13 hours of continuous feeding to get in her daily calories. This simply isn't possible.

Today was a better day with a better system. We met with the GI downtown and she was extremely helpful. She bumped her calories allotment down and gave us some changes to our plan to help us reach our target caloric intake. She reminded me that it is going to take some tweaking to find a schedule that works for all of us.

Throughout it all, Waverly has been a STAR. My sweet little girl is braver than anyone else I know. In the midst of all of this change, she constantly has a smile on her face. I can't even begin to imagine how the g-tube must feel inside of her and the change of being nourished in such a different way. She has been a trooper.

I haven't been able to process the reality of this new change yet. I have been so focused on taking care of her. For now, I am just grateful for medical science and our amazing team of doctors helping us put together the best plan for the kids.

Monday, August 27, 2012

Post-Op

Waverly's surgery was a success this afternoon. She was our super brave girl as always. The surgeon placed a Mic-Key button in her abdomen. It is very small and much less scary than I was anticipating. Wavey was very grumpy when she first woke up, but after a few hours she is much more content cage is happily relaxing in her hospital bed watching "Dumbo". She will be at Childrens through at least Wednesday night. They will slowly introduce formula through the tube tomorrow. Thanks for all of the prayers, positive energy, thoughts and vibes sent our way. We couldn't get through this without your love and support!!

Sunday, August 26, 2012

Surgery Tomorrow

Tomorrow is the *big* day.

Waverly is scheduled for surgery at 2:00 PM on Monday. 

We met with the anesthesiologist on Thursday for a consult. The nurse actually remembered Waverly from a few years ago when she had her tonsils & adenoids removed. I feel confident that they understand Waverly's needs and she will be in very capable hands tomorrow. I also spoke with our GI doc to go over the procedure and what happens afterwards. My friend, Carrie, has a lot of experience with g-tubes. She walked me through the surgery and answered all of my crazy questions. I feel comfortable with the medical aspects finally.

The emotional impact of this surgery...not so much.

Sunday, August 19, 2012

Surgery Scheduled

Waverly's surgery has been scheduled for Monday August 27th. I am so grateful they were able to get her in so quickly. She is ready. We are ready.

Wednesday, August 15, 2012

Doctor Visits Recap

It has been a busy week for my little girl. 

Yesterday she had her long awaited bilateral hip and brain MRI. We have been trying to get this test done for 4 months - that is how long it can take orthopedics and neurology to coordinate the test, so Waverly only had to be sedated one time. We should get the results sometime tomorrow. The brain MRI will most likely show continued loss of white matter and nothing new. The report I am most interested in receiving is for the hip. Waverly's right hip has been causing her a lot of pain the past 6 months. An x-ray showed some deterioration at the end of her femur. We are hoping the MRI will give us more detail and some sort of plan. We want to keep Waverly walking and mobile for as long as possible for her overall health.

Today we ventured down to CNMC for an Upper GI. She has had swallow studies, but never an UGI. I wasn't sure how she would do. She is compliant and never acts out, but she doesn't understand that we need her to be still or position a certain way. It took 3 of us, but she succeeded. She actually did a great job and enjoyed her orange cream barium shake. We should get the results in a few days. We had to get this test done before we are able to schedule Waverly's g-tube surgery. The pediatric surgeon wanted to get a good look inside of Waverly, specifically the stomach, to work out placement of the tube.

This afternoon our amazing SLP who specializes in feeding/swallowing popped over to take a look at Waverly. We typically see her every few months, as a consult to help us adapt to Waverly's ever changing swallowing needs. She has been working with us for about 2 years and is absolutely wonderful. I wanted to get her opinion on Wavey, before we move forward with surgery. We thought it was time, but I needed her confirmation. Upon the first attempt at a spoonful of pureed sweet potato, she noticed a marked change. Waverly was taking 10-15 seconds to swallow and rarely was it complete, meaning she was only partially able to swallow her food. The rest coated her tongue or was sitting on the back of her throat. Her tone has decreased and she is at a high risk for aspirating and developing pneumonia. She was working so hard to swallow such a small amount of puree.

We now know we are making the right decision moving forward with the feeding tube. Our SLP is contacting both our GI doctor and the surgeon to explain the urgency. We are hopeful we can get the surgery scheduled within the next few weeks. Until then we have to find some creative ways to get a lot of calories into her in a safe manner. Thank God for my Vitamix!!

Waverly has been her happy giggly self throughout the past few days. So often I dwell on how *I* feel. Today I was reminded how she must feel. I mean can you imagine losing your ability to swallow. And she can't understand why this is happening. She just rolls the food around, concentrating so hard to get her body to do something we never even have to think about.

This has been a difficult few days for Matt and I. Watching our little girl struggle to eat is so painful. We are grateful for the feeding tube option, so she can safely get the nourishment she so desperately needs. However, this is yet another step in her decline because of Sanfilippo.

Thursday, August 9, 2012

Surgery Consult

We met with the pediatric surgeon at CNMC this morning. She was very nice and is ready to move forward with the surgery, as soon as we have an anesthesia consultation. Timing wise, the surgery couldn't happen soon enough. I had such a difficult time feeding Waverly dinner tonight. She was struggling so much. She held the puree in her mouth for minutes at a time and fatigued quickly. In the past week, her weight went down by over 3 pounds. I know weight can fluctuate, but this seems like a lot. I am truly worried about her.

Tuesday, August 7, 2012

Mic-Key Button

On Friday, Matt and I took Waverly to see a new GI doctor. We haven't been thrilled with the GI doctors thus far, so we took our chances with a new woman at CNMC. She was wonderful!!! She came into the exam room well versed in Waverly and ready to listen. After some discussion, we have decided to move forward with a feeding tube for Waverly. She is on a strictly pureed diet and she can continue to eat by mouth, even with the mickey button (feeding tube). We knew from talking with other specialists and families that moving forward with the tube surgery while she is healthy is so important. I have also been concerned going into cold and flu season. Because we want to avoid the PEG and move right to the button, we are going to meet with a pediatric surgeon later this week to work out details. I am not sure when surgery will be scheduled, but I would anticipate sometime within the next few months.

This has not been an easy decision for us. As parents, we want to meet the most basic of needs for our kids - nourishing them. And unlike other families where the feeding tube is a temporary device to get them through a difficult period, we know that for Waverly it is yet another reminder of her body deteriorating from Sanfilippo.

Friday, August 3, 2012

Road Trip: Boston

We took a mini-vacation to Boston last weekend. The National MPS Society held its annual conference there. They asked Matt to speak during the final night about his book (www.benbeesleybook.com) and his story as a father dealing with an MPS diagnosis. The kids and I opted to site see with friends, while Matt attended the conference. Our dear friends live in Boston and offered to show us around the city. They even brought along a friend's daughter who helped me with the kids. We had a wonderful time exploring the city. And I ate some of the best food!! Massachusetts surprised us by being very hospitable and accommodating.


 Matt & Waverly at dinner
Our friend, Matt, holding Oliver in Boston Public Gardens 

Oliver and Dylan at Boston Commons

Jessie, Dylan, Waverly, Sasha & Oliver (all have Sanfilippo, except for Dylan)

The trip was fantastic, but simply not long enough. We will most definitely take another New England trip in the future. Lots of thanks to Cari, Matt, Joanne and Mike for entertaining us for the weekend.


Monday, July 23, 2012

Dine at CPK

Local friends: please print up this flyer and dine at a California Pizza Kitchen tomorrow, Tuesday July 24th. 20% of your bill will be donated to the MPS Society to further research. Thanks!!!

My Smiling Boy


On a hot and humid afternoon, we took the kids to the National Air & Space Museum to see the space shuttle. I captured this fantastic picture of Oliver smiling. He has a blast there running around a wide, open space.

Sweet Ruby

My friend Helen's daughter, Ruby, passed away last week. Helen and her husband were interviewed  and this lovely article was written about Ruby. I am so impressed by the grace and strength Helen shows through her grief. What a beautiful tribute to Ruby.

Sunday, July 15, 2012

Sorrow

I have pulled away from the MPS community as of late. It has been a gradual process and not fully intentional. As Waverly and Oliver get older, I find myself becoming much more aware of their very short life spans. I began to realize that this support system of other moms who are also facing Sanfilippo, means my grieving is going to increase as I watch friends mourn the loss of their children. When the kids were first diagnosed, I searched out as many parents as I could find who *understood*. Eventually, I found a group of families with whom I shared an extra special bond. We visit one another, talk on the phone, and provide a level of support that is so desperately needed given our situations.

I remember "watching" families of older children on the message boards and conferences. Some of them seemed distant and difficult to connect with. One mom, with whom I eventually got to know better as the years went by, said that she was hesitant to get to know new families. She had watched so many children pass away whose moms were a support to her when her daughter was diagnosed. It became too painful to keep adding families, knowing she would watch their loss one day. I understood, but not fully.

One can't fully understand that perspective until you are faced with it. And here I sit. A dear friend's daughter is in the final stage, most likely her final days. The sorrow I feel is deep within. My mind is constantly wondering how the family is doing, what they are doing. And then I drift to how will I do, what will I do. I have been looking at Waverly differently today. Trying to memorize her and will her to say "mommy" one more time. I imagine her final days and then I snap myself back to the present, unable to allow myself to go there for long.

Please keep my friend's family in your thoughts and prayers. Give the children in your life an extra big hug.

Saturday, July 14, 2012

CPK Fundraiser

DC, MD and NOVA friends: Go out for dinner for a wonderful cause!!! The next 3 Tuesdays you can head to one of the listed California Pizza Kitchens, eat great food and the restaurant will donate 20% of your bill to the National MPS Society. Every little bit adds up to helping us find a cure for Sanfilippo Syndrome and other MPS diseases. Just remember to print up the flyer and bring it with you!!! Share with your friends.

Friday, July 13, 2012

Routine Changes

We are settling into a new summer routine. 

Oliver started summer school this week. He has preschool in the mornings for the next 4 weeks to help him maintain his skills and prepare for Kindergarten in September. He is with his former preschool teacher, so he is happily running to her each morning and enjoying a bus ride home.

Waverly has been attending day camps at Jill's House. I cannot say enough wonderful things about the work Jill's House does for our family. Not only do they provide families with weekend respite, but they also host day camps in the summer and school breaks. We opted for day camps instead of summer school this year, because we didn't know any of the teachers at her assigned school. Plus we knew she would have such fun playing outside, swimming, having art & music, etc at Jill's House.

As always, once we settle into a routine new changes appear. Waverly has been very wobbly on her feet the past few weeks. She is very slow to find her balance in the morning after she gets out of bed. Her joints are stiffening. And she is falling for no apparent reason. It looks as if her hip is simply giving out and she drops to the ground. She has been on a pureed diet for months now. We knew the day would come when we would need to get her a feeding tube (g-tube) and we feel we are rapidly approaching that day. Thankfully, she hasn't developed pneumonia from aspiration or had any scary choking episodes. However we always wanted to be proactive when it came to her health. With cold and flu season beginning in the winter, we are consulting with our doctors about moving forward with the surgery in the fall. We are meeting with a new GI doctor next month and I hope we leave the appointment feeling confident in a decision. As a mom, there is nothing more basic than keeping your child well fed. Transitioning to reliance on a medical device to do that is not an easy step emotionally.

And as Waverly begins to slow down, Oliver is changing as well. He has always been good about getting out of the car and running to the door to wait for me or standing by the car as I get Waverly out. No longer. He now runs away, almost frantic like. I have to keep a much closer eye on him and hold his hands at all times.

In the midst of all of these changes, it is impossible to not get emotional. I have been struggling with sadness and anger over Sanfilippo. One of the difficulties of this disease is that you are constantly moving through periods of grief as abilities are lost, words disappear. I am grieving new losses and fearing the changes that are to come.


Thursday, July 5, 2012

London Vacation

Waverly & I have the opportunity to fly to London to spend a week with Matt. (Oliver had a very special week with my parents in PA.) After a few weeks apart, a reunion in such a special city was perfect. Thankfully Waverly did great on the plane and adjusted to the time change like a champ. She is such an easy going traveller. Here are a few photos highlights of our trip:

Here are Matt and Waverly in Grosvenor Square

Matt & Wavey in front of Buckingham Palace

Matt & Wavey in Regent's Park

Matt & Wavey at the Diana Memorial Playground

Peppa Pig World with friends!!!

Matt had to work during the week, so Waverly and I visited the old neighborhood, shopping, went to the zoo and enjoyed the lovely London parks. We spent Saturday with Matt exploring our old favorite London haunts. And Sunday was the highlight of our trip. We met up with some dear friends, who also have 2 children with Sanfilippo. We spent the day with them at Peppa Pig World (a favorite character of Waverly & Oliver - came home with loads of souvenirs). They are such an amazing family and we were so excited to finally introduce Waverly to them. 

Here is a photo of Sophie & Waverly - together at last, together forever.

Our time in London brought back some wonderful memories of living there with the kids before they were diagnosed. We were even able to meet up with Waverly's former speech therapist, which was a real treat for us. As we wandered the city, we were flooded with memories. It was lovely to remember them so vividly. We had such blissful years there - no Sanfilippo. Sadness crept in every so often, but thankfully we were able to keep it at bay. Simply enjoying the present, on a very special trip with our little girl.

Wednesday, July 4, 2012

Family Photo


A friend of Matt's took some family photos for us when we were back in Ohio in May. Here is a sample of what he was able to capture. I think he did a superb job!!

MIA

We have been MIA for the past month. Matt was in the UK for the month of June, so it was just the kids and I (along with help from my mom and cousin). I had zero time to blog, but I hope to catch up within the next few days. Just wanted to let you all know that we are fine. More to come....

Wednesday, June 13, 2012

Oliver, The Graduate

I am so proud of Oliver. This afternoon he graduated from preschool. The staff put together an amazing ceremony for all of the kids, with hats and diplomas of course. They called each of the kids' names and they walked over to the principal to receive their certificate. Adorable!!! Matt wasn't able to be there so he Skyped in to watch the event live. Here are a few photos of the big day, including a very smily Waverly who was so happy for her little brother.

Monday, June 11, 2012

Blue

One of the difficult issues that comes up in raising a child with a rare disease is how to relate with other families who have a child with the same rare disease. There is an online forum that I joined immediately upon diagnosis. And as I found my way around facebook, I connected with other families and joined support groups. One thing I have learned after 4 years in the Sanfilippo world, is that simply sharing a common diagnosis does not a friend make. We may be able to talk shop regarding the disease, but each family chooses their own path of dealing with it. Some families retreat, others immerse themselves, some choose to seek alternative treatments and therapies, while others decide to take a natural approach and treat symptoms as they arise. I have found those few families who I connect with on a level other than simply Sanfilippo. They are my go-to friends when I need advice or simply need to vent. Without their friendship, I would be lost. I recently realized just how horrible it will be when the children of these dear friends pass away. (Morbid thought, I know.) I am beginning to not only worry about my own children, but also these beautiful children who have become so important to our family. Obviously, I am feeling incredible sadness and as I have wallowed in Waverly & Oliver's future, I was reminded that I have dear friends who are also going to lose their children much too soon. I sometimes forget that our reality is incredibly abnormal and atypical.

Sunday, June 10, 2012

Field Day

Waverly participated in field day Friday at her school. Dressed in her green tee, she joined her second grade friends for a day of games outside. As you can see from her smile, she had a wonderful time. A huge thank you to her aide for providing her with the assistance to participate in such a fun day. You are wonderful, Chao-An!!!

Friday Fun

We went to a local working farm on Friday morning. It was a beautiful day and I thought Oliver would enjoy a little field trip. He was uninterested in the animals, however he loved kicking his feet in the gravel paths. It made him very happy. He was able to climb on some tractors and ride a carousel. We never pass up an opportunity to ride. We ended our fun Friday with a trip to our new favorite yogurt shop, Sweet Frog. As you can tell from the photo, Oliver loved his cake batter yogurt with M&Ms.

Thursday, June 7, 2012

Go Nats!!!

We took the kids to see the Nationals play on Sunday afternoon. It was a beautiful day for a baseball game. The kids got free jerseys and both home runs were hit into our section. After the game, kids can run the bases. Matt took Oliver down and a helper ran with Oliver. He really loved it. We had such a wonderful day!!!