Meet the McNeil Family

Meet the McNeil Family

Sunday, June 29, 2008

Goodbye London Zoo

We took the kids to the zoo today. Our membership expires tomorrow and it has become such a special place for us. We usually end up there on a nice weekend day, when we have no other plans. We took a few photos of the kids and I posted some of my favorites. Oliver likes to "push" the stroller now and the lower seat back makes a great handle for him. We had a great time, enjoying another nice summer day. We only have about a month left here, so we want to take advantage of our time by getting back to our favorite spots and seeing some new ones.

Friday, June 27, 2008

Thank You Duke

Today we finally notified Duke to let them know that we are not going to move ahead with the transplant. For some reason, even though we are so confident in our decision, writing down those words has been very difficult for me. Matt took the lead and wrote to the fabulous doctor who worked with our family. We quickly received a lovely response back from him. I am sure we will remain in close contact with Duke. They are experts on Sanfilippo and we will need their knowledge. Even though I know we made the right decision for our family, it is still a sad night for me. It is my hope that Duke's passion to help kids with MPS will one day lead to a treatment and cure. I hope that by treating Waverly & Oliver, they can help other families down the road.

Thursday, June 26, 2008

A New Word

Oliver can now say "Oliver". He has been saying something that sounds like it for about a week, but tonight it was crystal clear. It is adorable!! (I already called my Mom and my sister so they could hear him.) He also signed "more" for me tonight. I am so proud of my little boy. Waverly is also doing well. She had another good day at school today...although she is going to be quite disappointed when they move on from icing biscuits. Wavey is also in love with "Dumbo" and watches it almost every day. They are such sweet kids.

Monday, June 23, 2008

Beautiful Day In Windsor

We went to Windsor yesterday. It has been on our "places to go" list for a year. It was a beautiful day. We toured the castle, walked the grounds, explored Windsor & Eton, and strolled along the Thames. It was such a nice day to be out and enjoy the UK summer. We had a wonderful time.

Wednesday, June 18, 2008

Please Sleep

This has been a tough week. Oliver has been waking up really early in the morning, causing him to be quite grumpy the rest of the day. And Waverly is having a difficult time going to sleep at night. It makes for long days. Wavey is continuing to do well at school. Oliver had his first speech & language therapy session this week. He did beautifully. He was so attentive and his focus was so good. I think Priya (therapist to both kids) was shocked that Waverly used to be the same way at that age. It is startling how much she has changed.
In other news, one of Matt's co-workers is arranging a fundraiser BBQ for the kids in July. It will be a chance for friends and co-workers to donate to our family so we can set up a safe room in DC or to donate to the MPS Society in honor of the kids. I am so moved by the generosity of others. It is very humbling.
The past few days have been difficult for me, personally. I could use your prayers and encouragement. I have been sad - deeply sad.

Monday, June 16, 2008

We met the President!!

The President, First Lady and Ambassador & Mrs. Tuttle

This morning, Matt and I had the pleasure of attending an event at the Embassy for the President & First Lady. He wanted to thank the employees for their service. We were able to snap a few good photos and both Matt & I were able to shake his hand. All politics aside, it was an incredible opportunity.

It was also a great time for Matt and I to spend together - without the kids. I was able to go to lunch with 2 friends who were also at the event and we had a wonderful time. And, the kids both did well with their sitter (Thanks, Siobhan!!).

Saturday, June 14, 2008

Trooping the Colour

Waverly enjoying her Union Jack.

Oliver with the best seat on the parade route.

Her Majesty the Queen. Happy Birthday!!

The soldiers in their bear fur hats.

We went down to the Trooping the Colour parade today. We went last year and had such a good time, we thought we would return again this year. Waverly and Oliver were both great. Oliver especially enjoyed watching the horses. It was a beautiful day to be out and about.

On a more somber note, one of Matt's classmates from law school just lost her husband to cancer. They are our age, with 3 kids (2 girls and a baby boy born just a few weeks ago). Please keep Loucille and her family in your thoughts and prayers.

Friday, June 13, 2008

My Dream

Last night I had a dream that I was watching a video clip of Waverly and she was speaking. She was using full sentences and chatting away like other kids her age. I just kept watching and rewinding that scene over and over again. It was amazing. It was a good dream.

Wednesday, June 11, 2008

We Have An Apartment

Things are ever so slowly coming together. We have an apartment all lined up in the DC area. (Thanks to Jenny & Andy!!) I think it is going to be a great place to call home for at least 1 year. We are in the school district we wanted and close to some incredible school options for Waverly. I am so excited to get back to the US and put our lives together - arranging school and therapy as soon as possible. Creating a routine for Wavey is so vital. We are excited to see you when we are back in the US. We can't wait to connect with everyone again.

Sunday, June 8, 2008

Just A Fun Day

Today we took the kids to Hampstead Heath to a play area and wading pool. It was the first time in 2 years that Waverly has been in the water and it was Oliver's first time ever. They had a ball playing and splashing on a GORGEOUS 80 degree day. We met up with another family and really had a great time. You have to love living in London on a hot, sunny weekend day.
I also realized that I have not revealed the famous person I saw a few weeks ago. I ran into our neighbor Paul McCartney on the High Street! I recognized his voice before I actually saw him. He was very friendly with some fans at a cafe and I walked by him and got a little smile.
It was all very exciting.

Friday, June 6, 2008

Back On Schedule

This has been a really good week. We are back to our usual schedule and that is always great for Waverly. She has been doing a fabulous job at school and her teachers/therapists are reporting lots of talking and a few new words. She has just been so happy. Oliver is enjoying life. He is starting to get frustrated by the fact that he isn't walking yet. I hope he can master walking soon. It will make playground and park play a lot more fun...and easier on his knees. We have friends checking out apartments for us this weekend. We hope to have something lined up soon.
One of my favorite photos of Waverly on the carousel at London Zoo.

Oliver walking...still not on his own though.

Thursday, June 5, 2008

Apartment Hunting

I am exhausted. I have been researching apartments the past 3 days like a mad woman. We have a lot of things we need in a new home and not many choices. We have some friends going to check out a few places for us on Saturday. Once we decide on a place to live and a time to move in, we can start scheduling our trip home, pack out, etc. One step at a time.

Monday, June 2, 2008

Happy One Year Anniversary!!

Yesterday was our one year anniversary of arriving in London. We remember so vividly that first day, coming from the airport to our temporary flat and feeling so scared in this strange new country. I remember thinking - what have we done?!?! How quickly we adjusted and grew to love it here. It is home.

Sunday, June 1, 2008

No Doors

Matt and I are doing well...all things considered. We were able to go out on a date last week, while his parents were visiting. We went to one of Gordon Ramsey's restaurants called, The Warrington. It was a fantastic pub and we had an amazing meal!! It was so nice to be alone together and just be in love with one another....forgetting for a few moments about the future. We are trying to be very intentional with our marriage, knowing that the stress we are under can be fatal to a relationship. We will not allow that to happen. As Matt so beautifully said to me one night, "Sanfilippo is already taking both of my kids away from me. I will not allow it to take you, too."
We have decided that we are definitely leaving London. We need to settle down and make a home for our family. We will be back in the US at the end of July or beginning of August. We will most likely settle in the DC area, since Matt has a job lined up there already. (If only the cost of living wasn't so ridiculously high!! It scares us.) I feel like I have so much to do to once we arrive appointments, figuring out a therapy and school plan, buying a house, buying a car, etc. I get panicked just thinking about it.
These past few days have been really difficult. I think the relief of finally making a decision has worn off and the reality that we closed the door to our only option is setting in. I do not regret the decision we made. I only wish that there was something we could do - something other than sitting back and waiting for this awful disease to take our kids away from us. I am getting tired and am emotionally exhausted.