A lovely girl who graduated college with Matt and I sent us this very gently used (looks brand new!) car seat for Waverly. You can tell by the photos that she LOVES it! It big enough and has room to grow. I love that it has a 5-point harness to keep her safe and in her seat while we are driving around. Thank you for the wonderful car seat, Ann & family. You have made a little girl very comfy and secure.
Thursday, February 26, 2009
This morning I read an article about David Cameron. He is a politician in the UK whose 6 year-old son passed away yesterday. When his son was diagnosed with his disabilities a few years ago, Cameron said it hit him "almost like mourning. You're mourning the gap between your expectation and what has happened." I thought that was so beautifully stated.
I had a meeting with Waverly's teacher and support team this morning. All of the specialists shared their experience with Wavey and results from the developmental testing they administered with her. Every time I hear the words she tested at a 0-6 month level or 6-12 month level, I just want to weep. I know what they are saying it true, but those words are very powerful and they hurt. I hate that my beautiful little girl is slipping away. I do feel like everyone loves my little Wavey and they all talked about how smitten her classmates and teachers are with her. Her greatest strength is how much she enjoys being around everyone. I am so proud of her.
Wednesday, February 25, 2009
I have spent most of my day working on finding a respite care provider for our family. We have been approved for a waiver here in VA which allows us a certain number of hours per week of additional help. While the idea of having an extra set of hands is appealing, the process of finding someone who we trust and want to invite into our family is quite another. I wish that I had a friend or family member in the area whom I could hire. I would also love to find a college student who is interested in special education and looking for part time work. Unfortunately, I have neither, so I am forced to work with an agency. I am just not having a lot of luck. And I have only 30 days or I have to start the entire process all over again. Ugh!!
Waverly is definitely feeling better, but she has yet to get her appetite back. I am having to force her to eat and tonight she wouldn't even drink. I am not sure if she is still recovering, just exhausted, or if it is something more serious. Kids with Sanfilippo have an incredibly high pain tolerance and they are unable to communicate very well, so it is usually a guessing game and intuition.
Tomorrow I have a meeting at Waverly's school. We are beginning the preparation for kindergarten. Wow!! Our first meeting should be pain free. I have requested that she be reclassified from simply "hearing impaired" to a catagory more fitting of her disease. A new classification should allow me to get her better services and assistance...I hope.
Tuesday, February 24, 2009
The stomach bug that has been ravaging so many of your families finally hit ours. Waverly was sick all day and through the night Sunday. She was so sick - I have never seen her so lethargic and wiped out. Fortunately it only lasted about 24 hours and she is doing so much better today. I am hoping that Oliver stays healthy and is able to fight off the flu germs.
I had a meeting today about Oliver attending preschool in the fall. They looked over all of our reports and concluded that there is enough recent data, so they don't have to do their own developmental tests. I am thrilled. It saves me a lot of time and energy. We will have another meeting in a few weeks to classify Oliver and work on assigning services. I am hopeful that I can be better prepared, having been through this process for Waverly.
It has been a frustrating and depressing week. Colds and flu tend to have that impact. But I have also been dealing with an insurance company that just doesn't seem to get it. They think putting $200 towards Wavey's $8000 orthotics is acceptable - I greatly disagree with them. They are also changing their policy on therapy services and my kids are suffering the repercussions. I hate dealing with insurance companies, but I am going to be an expert eventually.
Saturday, February 21, 2009
I don't have a lot of time to write a long message. My sister and niece are in town visiting and I want to spend time with them. But, we took a few cute photos and I wanted to share them with you. The first is Oliver listening to "Sammy the Seal". The second is Waverly, Oliver and I reading together. And the third is Matt reading to the kids - Note: Waverly's new haircut. She choked on a barrette this past week and it really scared me. I wanted a short cut with bangs, no hair accessories required. She looks adorable!!
Thursday, February 19, 2009
Both Waverly & Oliver have been sick all week. We have been trapped inside our apartment for 3 days watching "Cinderella" on repeat and listening to the "Handy Manny" theme song blaring from Oli's toolbox. It has been a very long 3 days. I took the kids back to our pediatrician today (we were also there on Tuesday) and we were given some antibiotics. Joy!! They had their first dose tonight and I am hoping they wake up much happier children in the morning.
I got the reports from our trip to UNC last month. Even though they went over all of the information and developmental ages, it was still difficult to read. They are going to be incredibly helpful though. Next week we meet with Waverly's teacher and therapists to determine eligibility for services and placement for kindergarten. (WOW - kindergarten!!) I am also having a teleconference to determine placement and eligibility for Oliver's first year of preschool. Having the reports will allow us to come up with realistic goals for the kids and get them all of the therapeutic services they need.
Wednesday, February 18, 2009
One year ago today I was flying back to the US with both kids to take Waverly to CHoP. It was the beginning of a very long journey. These next few months are going to bring up a lot of memories as anniversaries of diagnoses arrive. I just heard from a friend who has a little girl Waverly's age with Sanfilippo. They received the devastating news that their baby boy also has Sanfilippo. I was hoping and praying that he would be spared from this horrible disease. I am so sorry that she has to face the loss of 2 children, too.
Monday, February 16, 2009
I just returned from a wonderful extended weekend in Nashville. For my birthday a few months ago, Matt has arranged a trip for me to visit 2 very dear college friends. He thought a weekend getaway was the perfect gift and he was so right! I spent 4 days with my friends and their amazing families. We talked, laughed, reminisced, ate, stopped and thoroughly enjoyed ourselves. The husbands and grandparents were all so supportive and helped with their kids so we were able to have some quality girl time. It was such a treat!!
I was a tad apprehensive about the trip. My one friend has a little girl who was born just a few days after Waverly. I was scared that being around her may be too difficult for me. Well, she won me over the moment I got off the plane when she handed me a picture she colored for me. We played "Go Fish" and Candyland. At one point she told me I was "so sweet, so nice and so pretty". (How can anyone not love a little girl who says that?!). Today she told me that she was really going to miss me and her mom wrote me to say that she cried after I left, saying that she really missed her friend. She has the sweetest spirit.
Thank you Sarah & Elizabeth for giving me such a wonderful break. Your friendship means so much to me. And thank you Matt for giving me exactly what I needed.
Wednesday, February 11, 2009
We spent the afternoon at Children's today. Our doctor was able to get us an earlier appointment for Waverly to see a physical medicine doctor. She was wonderful!! As we suspected, Waverly is going to be fitted with orthotics for both feet. Her feet are turning in, causing her to stumble quite often. The hope is the orthotics will help straighten her feet and allow her to walk without falling so much. I am not sure how she is going to tolerate them though. We are waiting to make an appointment with the assistive equipment folks. They will take molds for her orthotics and work with us about a safer car seat option for Wavey. She is currently in a booster seat, but she is leaning over and moving the seatbelt off her chest - it is just not safe. They will be able to help us find the best seat to keep her safe in our car.
It was another beautiful day. It actually hit 70. We so busy with therapy and doctor appointments that we weren't able to get out and enjoy it. But I do have some windows open and the fresh air feels divine.
Tuesday, February 10, 2009
I am so ready for spring to arrive. It was another glorious day. Oliver and I went to the park, after getting Waverly on the bus. We met my dear friend and her little boys. It has been so nice reconnecting with friends again. Having some adult conversation and face-to-face time has had such a positive impact on my attitude. Oliver loves the park. He is practicing climbing up the stairs, backing down, navigating through tunnels. I am so excited for the warm weather and the chance to be outside again. Spring can not come soon enough.
Monday, February 9, 2009
I am currently listening to Oliver play with his "Handy Manny" toolset. It is his favorite toy at the moment. There are 7 tools that fit into a tool box and when he pushes the button the (very loud) them song plays. It only comes out when Waverly is at school, because she loves to chew on the pieces.
We had a wonderful weekend. The weather was perfect - 60s and sunny. We went back to our favorite play park on Saturday. We met another foreign service family and their 3 kids. It was nice to be around friends and their children are adorable. Last night, I had the opportunity to meet with 2 local moms who each have a little boy with special needs. What a treat to go out for dinner with friends!! The one mom graduated a year behind me in college and we knew each other a little bit. She lives in northern VA and we have been in touch with one another since we moved into the area. The other mom is one of her friends. It was wonderful to feel understood so genuinely by someone else. The 3 hours passed quickly and I feel as if I have 2 wonderful new friends in my life. We hope to get together once a month.
Friday, February 6, 2009
This a common title among my postings. But it truly is the little things that bring such joy and celebration in our home. We have been working with Oliver's physical therapist on climbing. Just the simple task of climbing onto the couch. This morning I was sitting in our oversized chair with the ottoman pulled up. He took a running start, hoisted himself up and climbed the rest of the way. He crawled up and settled in next to me. Then he gave his signature thumbs up over his head (means "good job"). It was priceless. He has been back up there a few time already this morning. It is so fun to see him master something new. And yesterday, while walking Wavey back from her school bus, she repeated the word "today" back to me. I haven't heard her say that word in a long time and she wouldn't say it again. But for that moment, she was able to say it back to me. It was beautiful. I love little things.
Thursday, February 5, 2009
It has been a good week for us. We are back in to the swing of a regular school week - no snow days or inservice days. Yeah! Waverly has had a really good week. Her teacher said that the past 2 days she has been especially attentive and participating in some new activities in the classroom. I am so proud of her. Her teacher is reporting that she is continuing to stumble more often. We were able to get in with our physical medicine doctor next week (thanks to a call from our geneticist). I am anxious to see what we can do to correct her right foot that is turning in and causing her to fall more often. Oliver has been really into his Thomas the Trains we got him for Christmas. He loves it when we build the track and he can sit inside of the oval and push the trains around. He especially loves the bridges. It is really cute watching him play with such attentiveness.
I was able to meet with a friend of mine from London who now lives in VA. We got together with our boys and talked while they played. She loves my kids so much and has been through this journey with me. It was such a treat to be with a friend. I don't have a lot of friends here locally, so the time with her meant so much.
I have also been so thankful for the other Sanfilippo moms who have been such an incredible source of friendship, encouragement and knowledge. I seriously do not know how I could go on without their support. I am so excited for the opportunity to meet them and their lovely kids.
Tuesday, February 3, 2009
Some of my friends put together a lovely surprise. In November they arranged to have the kids photographed by a local photographer. We had a wonderful session - running around on the grounds of an old plantation. Gayle (said photographer) did such an amazing job. She sent me this copy to post on my blog and use for the "A Hundred for a Home" website. You can see how beautifully she captured Waverly & Oliver. I ordered this particular photo in black & white for our wall. I love it! Thanks to all of you who helped make this possible. What a treasured gift. I will have these photo memories with me forever.
Sunday, February 1, 2009
Today was absolutely beautiful. 60 degrees and sunny. We took the kids (and my parents who were down visiting for the weekend) to our favorite playground. It was designed especially for kids with special needs - Clemijontri. Waverly & Oliver had a ball running around. Wavey especially loved the swings. We also took a walk this afternoon on a local walking path. It was so nice to be outside and get a little taste of spring.
Matt and I were able to get out by ourselves both Friday and Saturday night. (Thanks to grandparents!) It was nice to get a break. Last night we went into DC. A favorite restaurant of ours in London opened a location here. We were feeling a little nostalgic and so we ventured down. It was really good. (For you locals, check out Nando's near Gallery Place.) We spent a lot of time talking about our lives. Never would we have imagined ourselves here.