Meet the McNeil Family

Meet the McNeil Family

Tuesday, January 31, 2012

And We Are Off!

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.

Monday, January 30, 2012


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!!

Sunday, January 29, 2012

Waverly's Weekend Adventure

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

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!

Friday, January 27, 2012

Oh Oliver!

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.

Wednesday, January 25, 2012

Surgery Scheduled

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.


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.

Thursday, January 19, 2012

Waverly & the Puddle of Drool

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

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.

Sunday, January 8, 2012

Photo Memories

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.

Thursday, January 5, 2012

House News - Almost There

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

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

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