Pack Out

I am frantically trying to organize all of our belongings for pack out. We basically need to figure out what to take on the plane, what will be shipped and arrive to us in about 2 weeks, and what will come by boat and take 2-3 months to arrive. Of course, something is wrong with the water in our building today of all days. I have a pile of laundry a mile high with towels & bedding that has to be finished when the movers arrive in the morning. It is exciting though and every day I am getting more excited about the move back to the US. I can't wait to catch up with friends and family!! I am off to continue packing. It is in the upper 80s today - yikes!

Proud

I am very proud of Oliver. He signed both "eat" and "finished" today. It was very cute. Of course...he also wedged himself into our end tables. (I had to capture the moment. We have one of Waverly stuck under a coffee table when she was younger.)

Waverly had a sick day today. She had 4 shots yesterday and she did not respond very well to them. She seems to be perking up finally. Hopefully we will be back on track tomorrow. I have been busy organizing the house for our move. They come on Friday morning to pack up the flat. It is all feeling a bit overwhelming at the moment, but I think we will be feeling good Friday night when everything is out of the house and on its way back to the US.

Ahhhh!

I just returned from the most wonderful massage at Selfridges. Three of Waverly's therapists gave me a gift certificate - they thought that I needed to take some time to relax and pamper myself. It was divine! I highly recommend Groom in Selfridges to all of my London friends. The 1/2 hour Zoom Zone is wonderful! Thank you to Priya, Melissa, and Jo for such a wonderful gift. You are all very special to our family. Your love for Waverly & Oliver is evident in all that you do with them. We are very fortunate to have found you all.

Thank You

Thanks to those who donated to our family, we were able to purchase this wonderful stroller for Waverly. It is made specifically for kids with special needs. It is larger than your average stroller and holds more weight. We have had difficulty finding anything she could comfortably fit into. And as she begins to lose more motor coordination, it will be imperative to have something to help her get around. We took her for a spin tonight and she loved it!! She has room to get comfy and she rides a bit higher. Plus, it will (hopefully) stop awful people from saying "she is too big to be in a stroller!!". We think she looks beautiful in it.

In other news, Oliver is getting better and better with his walking. He was strolling all over the park tonight - taking up to 20-30 steps on his own. I snapped this action shot to document his progress. I think he has finally realized that walking is much easier on his knees and more fun. Hopefully he will be a good little walker by the time we are back in the US.

Last night, Matt and I went over to our friends' home for a DELICIOUS dinner. It was a lot of fun to spend time with some people who have made our time in London so incredibly special. Thanks for having us over, Gigi & Rick!!

Heat Wave

It was another rough night. I love watching the video of Waverly, but it makes me incredibly sad. I had a difficult time sleeping last night after so many viewings. I wish I could free her from this awful disease. I hate Sanfilippo!!!

We are hoping to enjoy a beautiful weekend. We plan on taking a train to see Leeds Castle as some point. We may end up at the pool or fountains again due to the heat. It is almost 80 degrees, which is a real heat wave!!

At some point I need to think about beginning to get organized for our pack out scheduled for next week.

A Video

Our friends Josh & Katie put together this video. I wanted to share it with all of you. It features Wavey and her buddy Colin. They spent their first 2.5 years growing up together while we all living in Columbus. I think you will all enjoy it!

http://kjmaggard.googlepages.com/ourpalwavey.htm

Adorable

I thought some photos of Oliver and Waverly would lighten things up and brighten all of our days.

Counting Down

We are only about 2 weeks away from our big move back to the US. I can't believe the movers are coming in 1 week. I have not even really begun to prepare...although I am a purger by nature, so I don't have a lot of clutter around the house. It is going to be difficult to decide what toys to ship, since most of our items won't arrive for about 8 weeks. Toy selection is of utmost importance for our 2 months living in a temporary apartment.

We are all doing well. The kids and I can't seem to shake a cold that has been passed around the 3 of us for a few weeks now. We have spent much of this beautiful week indoors. Although I am determined to get out and enjoy the sunshine tomorrow. It is rarely warm enough for fountain and wading pool play, so we must take advantage of the opportunity.

I have noticed another change in Waverly. She seems to be having more difficulty speaking and her speech is more strained. She is trying to say something, but the clarity is fading. She really seems to be struggling to get the word out. I have get the video camera out!! I need to tape her more!!

As I have said in my last few posts, this week has just been more difficult than usual for us. The move back home will be an emotional one.

Continues

This continues to be a difficult week for Matt and I. We are leaving London in just over 2 weeks. We realized that London has become a bit of a security blanket for us. Things feel safe here. When we return to the US, we will be meeting the doctors who will be with us through all of the pain that is to come. We will be preparing safe rooms and settling into someplace for the long haul. I think it has a feeling of finality right now, instead of a new beginning.

Sadness

This has been a tough week. I have been down. I have seen changes in Waverly over the past 5 days. I know she is there, but Sanfilippo is trying to take her from me. There are more vacant stares and quieter periods. But when she smiles or laughs, I still can see my Waverly. My little girl. Oliver just woke up with a slight fever. I hate seeing him sick. A little fever puts me in tears because of all I think that he is going to have to endure. I hate Sanfilippo.

I am listening to Over the Rhine. Their music soothes my sad spirit. I love the line in "Latter Days": "And if the music starts before I get there. Dance without me. You dance so gracefully." I always think of Waverly dancing in heaven.

Fundraising

Matt and I have received a number of e-mails regarding donating to the fundraising effort for our family. We truly appreciate your willingness to help. As soon as we have a US coordinator in place, I will post information on the blog. Thank you all so much!!

Changes

We got word from our doctors that Oliver's genetic test confirmed that he has Sanfilippo. We were not holding out hope for a miracle, but it is still sad to be given the news....again. We are going to meet with a geneticist when we are back in the US to go over all of the results and see what further tests may need to be run.

Wavey continues to be a bit calmer this week. Both her OT and speech therapists commented today on Waverly's inability to do tasks she used to be able to do. They can see the negative effect that the disease is having on her little brain. Unfortunately, we can too. It is a terrible thing to watch your child struggle with something that once came so naturally.

Another Sanfilippo Family's Story

A friend of mine saw this article in the paper recently and I was able to find it online today. I thought some of you would be interested to read about another family devastated by Sanfilippo. Oh how I wish that I could prevent another family from receiving this horrible news!!

http://www.thisislondon.co.uk/news/article-23514763-details/Parents+of+terminally-ill+toddler+sell+their+home+and+quit+work+to+take+her+on+dream+holidays/article.do

A Good Day

I am having a good day. Waverly and Oliver both had therapy this morning and they did an excellent job. Oliver did a wonderful job matching with a shape puzzle. I am so proud, but I can't help feeling sorrow that one day he will be unable to complete a basic puzzle like that. Then I took both kids up to Swiss Cottage to play in the fountain. It is warm here - low 70s - so we needed to cool off in the water. Waverly was incredibly well behaved. I tend to shy away from taking both kids out to play by myself anymore. But Waverly has been so calm lately! She wandered away a few times and I had to chase her down, but for the most part she just stayed right next to me walking around in the water. I feel like I can manage them both at parks again. It helps to have friends willing to lend a hand. (Thanks, Stacy!)

BBQ Fundraiser

Oliver fenced in and happy about it.

The kids playing together.

Waverly eating an Oreo - yum!

Today Matt's co-workers and our friends had a fundraiser BBQ in honor of Waverly & Oliver. So many people were there enjoying wonderful food and hanging out together. It was an incredible afternoon for us. I felt so loved and supported. It was a very humbling experience for us and we were amazed by the generosity of our embassy family.

I am not sure how to effectively thank everyone who helped organize the BBQ and who gave so generously to us. Gini & Andres, you both put in so much time and effort to make a special day for our family. I will forever be grateful to you both. You have inspired me. Bill, I know that you were also instrumental in putting everything together. Thank you for organizing the event. To everyone else who helped organize the event, thank you. And to everyone who came to show your support and who gave to our family, thank you for caring so much about Waverly & Oliver.

Graduation Day!!!

Waverly holding her certificate - I LOVE this photo!

Waverly receiving her certificate

Waverly and her teacher, Miss Gilly

Waverly graduated from her nursery school today!!! Today was "party day" and all of the kids who are moving on to different schools next year were given certificates and photos. Parents were invited for the last 15 minutes for the little ceremony. Matt and I were both moved to tears watching her go across the stage. It was a special moment for all of us. The teachers, assistants, and therapists who work with her have all been outstanding. We are so grateful to all of them for their love of Waverly and the effort they put into her. We are so fortunate to have found them and we are going to miss them dearly.

Congratulations, Wavey!!! Mommy & Daddy are so very proud of you.

The Girls!!!

Here is a photo from the Ambassador's 4th of July party last week. These are the women who have made my time in London so much fun. They are an amazing group and I am really going to miss them when we leave next month.

Oliver's Turn

Oliver woke up last night with a super high fever and has been sick all day. I am not sure what germ we have, but I am determined to sanitize it away this afternoon. I will be scrubbing down the house while Oliver naps and Waverly gets her daily dose of Dumbo. I hope they are healthy tomorrow. Wavey's school is having an end of the term party and I want to be sure she can attend. Plus, Matt and I were hoping to pick her up together for the end of the party and pictures.

I keep thinking about the call from our neurologist. Even though everything else has confirmed that the kids have Sanfilippo, it struck me that the DNA has proven it. There is no doubt, no lab confusion, no anomaly...Waverly and Oliver have a terrible disease. I have been more shaken than I thought I would be.

No News Is Good News

I just got off the phone with our doctor at CHoP and everything is fine. They just wanted us to know that the genetic test came back and Waverly does indeed have the DNA mutation for MPS III A. No surprises, just confirmation that the nightmare continues.

We Finally Got Out of the House

Waverly was still running a slight fever yesterday, but we had to get out of the house. We went to the Science Museum, where they have a hands on area for younger kids. It was incredibly full with school kids, so Waverly was overwhelmed and just held our hand the entire time. Oliver LOVED the water table and spent almost an hour playing there. Then we went out for lunch and took a long walk through Hyde Park. It rained on and off, but we all needed to get out of the house. Waverly was fine this morning and is off at school. This is her last week at nursery school - the term ends on Friday. She is going to attend group sessions at her therapists' office, because the structure and schedule are good for her.

I am waiting on a call from our doctors at CHoP. Something came up about a genetic test on Waverly. I am very nervous...these calls usually do not go well for us. Here is hoping for good news - or at least no real news.

Three For Three

Waverly was still sick today with a fever. I was able to get out for a few hours this afternoon and visit the V & A museum - one of my favorites - and take in their new jewelry exhibit. We have fingers crossed that tomorrow will be a better day.

What A Time To Be Sick!!

Matt has a 4 day weekend and we decided that we were going to take a day trip every day to see some place we have yet to visit (Canterbury, Oxford, Dover, Leeds Castle, etc.). Well, Waverly and Oliver both woke up in the middle of the night on Thursday to throw up. And Waverly has had a fever ever since. Of course, the past 2 days have been GORGEOUS and we have been forced to stay inside. We are hoping whatever sickness she has goes away so we can enjoy the rest of our weekend. Waverly did play the big sister disciplinarian to Oliver this morning. Matt told Oliver "no" when he was getting into a drawer and Oli didn't listen. So Waverly decided to help Daddy out and went over and pulled him down - twice. It was VERY cute to see her understand that Oliver wasn't listening and he needed to obey.

Happy 4th of July!!

Last night Matt and I went to the Ambassador's house for a 4th of July party. We had such a great time. The kids were home safe with one of the best sitters and we were able to relax & enjoy ourselves. "The Girls" were there -they a few women from our playgroup whom I have grown close to and we had so much fun together. We drank champagne, listened to Sarah Brightman sing live (including "Time to Say Goodbye"), and had fun mingling with hundreds of people at Winfield House. Then we were off to a neighborhood pub for more fun. I realized that for as excited I am to get back home to the US, I am really going to miss London and the friends we have made here. I am so fortunate to have found an amazing group of friends.

Freshly Cut Grass

The kids and I were walking back from the bus stop and a man was cutting the grass at our building. The sound of the lawn mower and the smell of the freshly cut grass was such a reminder that it is summer. I am counting down the days until I am back in the US. I have so many appointments for the kids and I need to work on getting Waverly registered for preschool. The smell of grass made me wish that we were moving into a house with a yard. I know that I have said this before, but I wish that we could settle into a home right away and not have to move into an apartment. I just want to "nest" - create safe rooms for the kids, have a fenced in yard so they can play outside, and have a home. For the 10 years of our marriage we have always been temporary where ever we have lived. I am ready for that to be over and to settle down. We did find out that Matt has been officially assigned a position in DC. The State Department has been so good to us. Waverly is showing some difficulty with walking and stairs...nothing major yet, just her feet turning in and causing her some trouble. Oliver is still not walking, but he is showing interest and trying. I can't wait for him to start running around.