Nearly four years ago, Waverly and Oliver were diagnosed with Sanfilippo syndrome. Our lives were upended, our hopes dashed. With the kids' medical clearance to live overseas soon to be withdrawn, Matt's career as a diplomat at an abrupt end less than two years after it began. We would be moving back to DC to start over. Our wonderful friends,Kamarah & Michele, came alongside us and asked what they could do to help. Compassionate dreamers that they are, they wanted to give us a home of our own to raise our children in. With their help and that of many, many friends and perfect strangers, we bought that home today. We are humbled to be the object of such generosity, thankful for such a tangible display of love and grace, and hopeful that we can pay forward a fraction of the blessings that have been poured over us. Thank you, friends, for what you did and for who you are.
Wednesday, February 29, 2012
Monday, February 27, 2012
We started Waverly on a new medication over the weekend. Our geneticist wanted us to try Atropine drops to help decrease Waverly's drooling and possibly avoid surgery at the end of March to excise salivary glands. It is a simple medication, with one drop placed under the tongue twice a day. It has only been a few days, but thus far we are very pleased with the results. Waverly hasn't been as soaked during the day, her face is less irritated from the saliva on her skin and she woke up with minimal drool on her sheets. Thankfully, we haven't seen any negative side effects either. I am most concerned about how it affects her eating. I don't want to increase her difficulty swallowing food, simply because she isn't producing as much saliva.
I am so thankful for doctors who work with us to create the safest option and strive to improve quality of life.
We are in the home stretch with less than 2 days to go until closing. I spent the morning rushing around to provide last minute documentation and I took a quick walk through of the house. It was so nice to see it empty. It is going to look so nice, once we get some color on the walls and our personal touch to make it feel like a home. Each days brings more and more excitement!!
Tuesday, February 21, 2012
8 days and counting. I am honestly feeling happier than I have in years. Years!! The knowledge that we will soon own a home that such a great fit for Waverly & Oliver's needs is thrilling. I keep imagining the cookouts on the patio, waiting on the front porch for the school bus to drop the kids off in the afternoon, snuggling up with the family in front of the fire place. Everything is finally coming together for us.
I have spent the past week selecting new carpet for the bedrooms. We also selected a painter who will do all of the interiors of the house, plus replacing some trim and painting the kitchen cabinets. I also met with a contractor about making some changes to the kitchen. There are so many decisions, but they have been so much fun. Today I am finalizing paint colors - not easy, but thankfully I have a new friend to help me.
The kids are both doing well. Waverly has yet to see the house. I know she will love finally having her own room. I can't wait to make it perfect for her, complete with a cosy reading area so Matt and I can read her her favorites stories. Oliver has been to the house a few times and loves it. He runs for the sliding door, because he loves being outside so much. He is going to thoroughly enjoy having a backyard.
In the midst of all of the house decisions, we also made a decision regarding the school situation. We are going to keep the kids where they are for the rest of the school year. For Oliver in particular, he does not adjust easily to new people and situations. It will set him back to have such a big change so late in the school year. We are working with the principal to see if transportation can be provided. Hopefully, it will. Otherwise, I will be spending a lot of time in the car.
Tuesday, February 14, 2012
My days seem to be flying by as we approach our closing date (15 days!). Thankfully, everything is going smoothly. The appraisal should be completed this week and then I think that is everything we need to finalize the loan and move forward. I have arranged for movers to help us move all of the furniture and special medical equipment movers to move their Sleep Safe beds to the new house. I am meeting the carpet guy at the house tomorrow morning to select new carpets for the bedrooms. And I am meeting with 2 recommended painters to get an estimate for painting the interior. I am also meeting with a contractor tomorrow (my cousin) about making some changes to the kitchen. In other positive news, the sellers agreed to split the cost of the drainage issue in the backyard. Matt and I are so thankful for reasonable sellers, who realized that this was a big issue that needs to be taken care of.
Tomorrow I am going to tour the school that Waverly & Oliver should attend when we move to our new house. (We are in the same district, but the schools are different out there.) I am trying to keep an open mind. The school has a very good reputation, but I worry about the change. I am really looking forward to seeing the classroom and meeting the staff though. I tend to follow my gut, so I hope it speaks to me loud and clear. We have been offered the option of staying at their current school, but I would most likely have to drive them to/from school each day. It doesn't sound too bad at first, but after a few weeks I think it would become quite tedious. We *love* their school though and leaving it would be so difficult for all of us.
Friday, February 10, 2012
We are getting closer and closer to our closing date. Everything is moving along nicely. I met with a landscape and drainage company this week, regarding the issues of pooling water in the backyard. It is going to be a costly, but necessary fix. The yard is one of the best features of the house and we want to enjoy our outdoor space. I am meeting with a carpet guy and some painters next week at the house. Hopefully, I can make some selections and get things booked. We want to get the work done as soon as possible after closing, so we can move into the house quickly.
A friend of a friend contacted me this week. She is an interior designer and offered us her services to help transform our grandma looking ranch house into a cheery home for our family. She has been incredibly helpful thus far and I look forward to working with her throughout the next few weeks.
I am so thankful for the help we have been given. From purchasing the home to recommendations for vendors to assistance with design, people have been so gracious. Thank you all!!
Tuesday, February 7, 2012
This morning I had Oliver's triennial eligibility meeting. Every 3 years his entire educational team gets together to decide if he is still eligible for special education services. Given the diagnosis of Sanfilippo Syndrome it seems silly to have these, but we have to comply with the law. Thankfully, much of the information from our visits to the University of MN for the Natural History study is used to determine services.
I have been through many IEP, addendum and eligibility meetings in the past few years. Thankfully, they have all gone smoothly. We are fortunate to live in an excellent school district with superb special education programs.
My eyes still well up with tears at almost every meeting. Typically is it when we have to all agree and check a box stating that Waverly & Oliver are significantly below average in varying categories. It happened again this morning. My head down pretending to follow along, desperate to not allow a tear to escape and drip onto my papers. I made it without an ink smudge on my signature.
And so Oliver is set for another 3 years. Now I have to make it through Waverly's later this spring. It is not going to be easy.
We went through home inspection yesterday for the new house in Fairfax. Thankfully, everything well incredibly well. The only major issue was some water pooling in the back yard. I am meeting with a drainage & landscape guy on Wednesday morning to see what can be done and how much it will cost. The back yard is such an asset to the property and we are so excited to finally have some outdoor space. We don't want a soggy yard and mosquitos. Most of the other issues are fixes we can do or recommendations for the future.
Oliver came along with us to the house for the inspection. We set him up with a video and he was content for most of the morning. He did do some exploring and selected his bedroom. It was so cute watching him run around the house. It is going to be so nice to have so much more room and a backyard.
Each day that goes by, I am more and more thankful that the Vienna property didn't work out for us. The house is perfect for the kids needs and we are so excited to make it our home. We close in about 3 weeks!!
Friday, February 3, 2012
We are officially in contract!! The paperwork has all been signed and we are set to close at the end of the month. This has been one crazy week for our family, but we are so pleased with the results. We are on our way to a large one floor ranch home, with zero steps to access the house and all of the rooms. We are beyond excited and we can't wait to have friends & family visit. We will finally have room for house guest.
We have a verbal agreement with the sellers!!! Hopefully, the paperwork will be signed this afternoon and we will officially be in contract. The inspection has already been arranged for Monday morning. This house has no basement, so hopefully no mold issues. We are incredibly excited about this new home. Thanks for your words of support and prayers.
Thursday, February 2, 2012
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.
Wednesday, February 1, 2012
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.