Thursday, January 29, 2009
I took this picture of the kids last night. Oliver loves taking a bubble bath and says "buh-buh-buh" as he runs to the tub and signs "bubbles". Waverly on the other hand wants to get out as soon as possible.
Wednesday, January 28, 2009
We had our first snowfall in Virginia yesterday and our first snow day today. It is always difficult to be off our routine. Waverly's time in school is a wonderful break and it allows me to spend some time one-on-one with Oliver. We spent most of the morning at therapy appointments and watched some classic Waverly movies in the afternoon (Cinderella and Dumbo). Matt had to work late tonight, so I was on my own all day. He did, however, wake up early to de-ice the car for me. (What a wonderful husband!)
We are still "recovering" from our appointment. It was so beneficial to us, even though it is such a gigantic reminder that this disease is taking our kids away from us.
Monday, January 26, 2009
We just returned home from a very emotional trip to UNC to see a developmental pediatrician who is extremely knowledgeable on MPS III. Matt and I knew it was going to be an emotional trip to NC. We drove by the hotel we stayed at when we were at Duke for the transplant consultation and so many memories came back. It is difficult to even express the stressful week we had and the agonizing decision we were forced to make. For those of you following the blog, I am sure you remember this time.
Today we spent 5 hours meeting with our doctor and her team. They conducted a full developmental evaluation and determined a developmental age in various categories. We knew that Waverly has lost skills since our last visit, so we were prepared for lower numbers. Still, knowing that she is between 6 - 14 months across the board is painful. It is so helpful to provide them to her therapists, teachers, babysitters, etc. It allows people to adjust their expectations. Oliver is continuing to learn and his developmental age is increasing. He is still behind his peers, coming in somewhere around 18-20 months. Again, this is so helpful for us.
The doctor had some wonderful suggestions for us in terms of things to watch for and tests that need to be done. She is also going to help us create ideas and goals for IEPs and school placements that need to be done this spring. I am SO thankful for her input in this area.
She was able to give us an idea of what the next year will look like for us. (This is always the most difficult part of the appointment.) She believes Waverly will likely have considerable difficulty with her mobility by the end of the year and will probably test around the 6-9 month level at our next appointment. She warned us that we are going to see some noticeable changes in her ability to walk. Oliver is going to continue to learn new skills, but in 12 months he may only move up 4-6 months developmentally.
We were talking with her about how we feel this is Oliver's last year to really learn new skills and progress. We want to have as much intervention as possible for him. We figure the more he learns, the longer it will take this terrible disease to take it away from him.
Tonight is a bit solemn in our apartment. The kids are asleep. Matt and I are taking in the news. The sadness has set in. Tears are flowing. Desperate for a cure.
Sunday, January 25, 2009
We just realized that Waverly lost her first tooth. It has been loose for months and I just haven't been able to get a good enough grip on it to pull it out. She went to bed with all of her baby teeth and woke up down one. We aren't sure if it is in her bed or in her belly. But she has reached another milestone.
And in the celebrating, there is sadness. There is no tooth fairy pillow under her head as she sleeps tonight. No dreams of the coins that await her in the morning. No toy or stuffed animal she is saving her money to buy.
Just a little girl...content in her Daddy's arms...falling asleep.
We are off to North Carolina today. We are taking Waverly & Oliver back to see a developmental pediatrician and her team. They evaluated the kids back in May, when we were there to decide if we wanted to pursue the transplant option. The doctor has seen a lot of kids with Sanfilippo and is conducting a long term study on their development. She is an incredible resource for us. It will be a long day tomorrow. The kids will both have a full evaluation from an audiologist, PT, OT, Speech Therapist, and the pediatrician. They keep it fun and they both did really well the last time we were there. Plus, they are quite used to these evaluations and therapy settings.
I think the trip may end up being a bit emotional for me. Just being back in the area is going to bring up a lot of memories from our last visit. That was the most difficult week of my life, leading up to the most difficult decision that I have ever had to make. However, we are so confident that we made the best decision for Waverly, Oliver and our family.
We got the sweetest little note via "A Hundred for a Home" the other day. Some 5th and 6th graders heard about our kids and the fundraising efforts. They decided to have their own fundraiser. If you brought in 50 cents, you could dress casual for the day. They sent in over $200!! Matt and I were so touched by their tremendous effort to help Waverly & Oliver.
Below are 2 photos of the kids wearing their new hats. A girl sent them to us after hearing about Waverly & Oliver. She made them especially for Waverly & Oliver, to help bring comfort and coziness to them. Isn't that so sweet?!
Friday, January 23, 2009
Even though it was a short "work" week (Matt had off Monday and Tuesday), it was still LONG and I am so excited the weekend is upon us. The kids are both feeling much better, Matt fought off getting sick and I am just about healed. Now if only spring would arrive and we could play outside - that would be perfect.
The melatonin is still the miracle drug in our household. Waverly has been falling asleep within 15 minutes since we started her on it. She still wakes up in the middle of the night, but we are able to get her back to sleep. It has been so nice for Matt & I to have some time together at night.
Oliver has conquered a new sign this week: "music". It is so exciting to watch him learn how to communicate...even if it's not through his speech.
Wednesday, January 21, 2009
Oliver and Matt watched the entire inauguration together yesterday. Oli was fascinated by it and clapped with the audience. It was adorable...and made Matt so proud.
Monday, January 19, 2009
It has been a long weekend for all of us. Both kids are sick with strep and Oliver has pink eye. I am sure it is only a matter of time until we are all ill. We are one contagious household.
Last night I watched some video footage of the kids that my friend Kamarah sent. She and Michele were here for a visit in November. She captured Waverly singing "Tomorrow" and "A Dream is a Wish Your Heart Makes" (2 of Wavey's favorites). And me reading "Sammy the Seal". (Wavey likes to finish each page for me, by completing the last word of each sentence.) I was so excited to have those memories on film. I had a good cry when it was over.
It was emotional for me. I spent time later that night putting photos from our last week in London in an album. I realized that I have put so much effort in documenting memories and writing down the places and date and people. Thinking one day Waverly & Oliver will be sharing the photos with their kids and grandkids. I was putting together an album for me. One that will hopefully bring comfort and warm memories when they are gone. It was a terribly depressing evening, but sometimes I need to just sit in my sadness. That is exactly what I did.
Saturday, January 17, 2009
What a long week it has been. 3 days trapped indoors with a sick little girl and a little boy perfecting his 2 year-old tantrums can really be difficult. Now we have a 4 day weekend ahead of us, with no real plans. Initially we were hoping to take in some of the inauguration events and actually be on the Mall for the big day. But due to the cold weather, sick kids and massive crowds, we are opting to stay as far away from DC as possible these next few days. Taking it all in from the comfort of our apartment sounds much more cozy.
Aside from strep, both kids are doing well. Waverly's physical therapist is growing more concerned about Wavey's foot. Her right foot is turning in even more, causing her to stumble quite a bit. She showed me some stretching exercises to do to try to strengthen the muscle. We are going to see a physical medicine doctor in March. I can't wait! She is most likely going to need some type of orthotics. Oliver is 2 - he is beginning to assert himself and he is just like his mommy - stubborn! (My Mom thinks it is funny to see me get so frustrated with him for this reason - payback.)
Thursday, January 15, 2009
The melatonin strikes again. Last night she fell asleep in 10 minutes and tonight 15 minutes. It is incredible!! We also took her to the doctor tonight. She has strep throat, poor thing. I am sure it is only going to be a matter of time until Oliver comes down with it. I love our pediatrician. She called me to say she is running about 45 minutes late, so take my time getting there. She knows Waverly doesn't tolerate the waiting room very well. She is the best!
Wednesday, January 14, 2009
Last night Matt and I gave Waverly a small amount of melatonin before bed. Many of our doctors and other moms have suggested we try it, to see if it will help Wavey fall asleep faster at night. It is a totally natural product. We tried it last night and she feel asleep in record time. 11 minutes!!! She is also still battling a bit of a cold, but I think the combination of actually feeling sleepy and the melatonin worked beautifully. We are going to try it for a few weeks and see if we can "reset" her little body to be sleepy at a certain time and fall asleep more quickly.
Tuesday, January 13, 2009
Oliver had his 2 year check-up today. He has been terrified of doctors ever since he was strapped down at the ENT's office to remove ear wax. He cried the moment we got in the office, but our wonderful pediatrician was able to calm him down and get the exam done. He is one BIG little boy - totally off the growth charts. He is such a happy little guy, who is beginning to assert himself as only a 2 year-old can.
I have had the wonderful opportunity of communicating with some other moms who have children with Sanfilippo. Last night I was checking out their websites and I just fall in love with these kids. I only wish I lived closer to some of the families. What a treat to visit with these other moms and allow the kids to play with one another. There is a conference for MPS families in FL this December. We have been tossing around the idea of going. After watching some videos of the kids and looking through their photos, I have to go.
Monday, January 12, 2009
Waverly has been quite a handful today. For those of you who saw the video that my friend Kamarah made, Wavey has an insatiable urge to chew. She still wears her chewelery necklace and it is wonderful. But today she wanted to chew everything she came in contact with - books, pillows, toys, furniture, clothing, etc. It is so difficult to know how to handle it. I have everything baby proofed. I try not to have anything even remotely chokeable within her reach.
She was also in a "pillaging mood". That is what Matt calls it when Waverly roams from room to room dumping out bins, knocking over books and creating a mess in her wake. It was quite a day.
But she is one happy little girl.
Sunday, January 11, 2009
Sleep problems are one of the many frustrations that parents of children with Sanfilippo experience. For some reason, many MPS kids have difficulty falling, staying and going back to sleep.
Waverly used to be a WONDERFUL sleeper. Until she was about 3, she would go to bed at 8 and wake up at 8. Plus, take a 2 hour nap in the afternoon. No fussing - she loved sleep. Then, she started coming out a lot when we would lay her down or she would wake up in the middle of the night and come into our room. For over a year, Matt and I got very little sleep. We would fight with her, putting her back in her bed over and over again all night long. It was exhausting. I researched how to handle this problem and followed the "Super Nanny" approach. NOTHING worked!! Finally we succumbed to just laying with her until she fell asleep and then allowing her to climb into our bed when she woke in the middle of the night.
Since we started laying with her and letting her come into our room, we have all slept so much better. The down side is that Matt and I have must less time together at night. This past week, Wavey has been having difficulty again. She took 2.5 to fall asleep last night, leaving Matt and I with very little time before we needed to head off to bed. I am hoping that tonight goes better - Matt is in there with her now. I am hoping this may just be because she is sick with a cold and not a new phase that we are entering into.
Thursday, January 8, 2009
I realized just how strange I am when I opened our mailbox to find the new 2009 handbook from our insurance company. I was so excited to read about the new changes and benefits added to our plan this year. (Sad, I know.) To my incredible delight our insurance company is now covering all audiological care and will pay for hearing aids every 5 years. This is totally brand new and something I have written to them about since Oliver was first diagnosed with a hearing loss almost 2 years ago. This made my day!! Finally, they have realized that neglecting to cover hearing loss claims is so detrimental to the development of those children. Go Coventry!!
We are also excited because our university alumni magazine is going to do a story on Waverly & Oliver and "A Hundred for a Home". What a wonderful way to get additional publicity for MPS and hopefully generate interest so we can find a treatment option & a cure. I will be sure to post a link when the article is published. I think it will be a few months away.
It has been a good week. I just have felt more positive than I have felt in a long time. The kids are both doing well. I am pleased with schooling, therapy and our doctors. My attitude at home is more about enjoying the kids and that makes me a better mom. Don't get me wrong. I still cry every day and I am filled with sadness...but I am also realizing how incredibly blessed to have Wavey & Oli in my life. I truly am honored to have been given such amazing kids.
Wednesday, January 7, 2009
It is quiet in my little apartment. Waverly is at school and Oliver is taking a nap on this very chilly, rainy afternoon. I have been thinking a lot about this next year. I am not one to make New Year's resolutions, but I do want to make some changes this year. For starters, I really want to take advantage of this year with Oliver. Right around Waverly's 3rd birthday, Matt & I began to notice the differences between Wavey and the other kids her age. Everything changed so quickly after that point. With only 1 year until Oliver turns 3, I want to take advantage of his skills. He has such a beautiful attention span. He loves to focus on a toy, mimic my actions, and engage with me. I need to slow down and enjoy that time with him. I need to get messy - bring out the finger paints, playdoh and markers.
I also had another thought that was so comforting to me. A dear old friend wrote me after one of my last posts titled "one sided". She said that to my kids, my voice is one of the most beautiful and comforting sounds. I loved that. I used to dream about singing for crowds and now I am quite content with my audience of 2. They love music and are calmed by a familiar song.
Tuesday, January 6, 2009
A student in CA made a documentary about the mother of 2 children with Sanfilippo. It is called "Courage". They are having a premiere this weekend in Orange, CA for anyone in the LA area. All proceeds are going to the MPS Society. You can find more about it at www.couragemovie.com. You can also view a trailer for the movie at www.vimeo.com/2559857. It brought me to tears.
Monday, January 5, 2009
It was more difficult than I thought it would be to get back into our routine. It was nice being around family and having Matt home. I loved the extra hands, but I really enjoyed the company. I tend to get lonely. I realized while strolling around Target last week one night, without the kids (thanks Mom!), that I talk to them constantly. Narrating life for them. I caught myself a few times saying "let's go get some diapers" or "ready, steady, go"- out loud. The other customers must have thought I was crazy. I spend a lot of time talking to them, wishing they could talk back. How I would love to have a conversation with Waverly.
Sunday, January 4, 2009
I got this photo from one of the Disney photographers. It was the best one in the bunch. I couldn't find any with Waverly looking at the camera. Going through the pictures was a wonderful reminder of how much fun we had on our trip. I can't wait to take the kids back there again soon.
Saturday, January 3, 2009
There is a forum for parents of kids with MPS. I have found it so helpful. There is so my experience among all the moms and it is so nice to communicate with people who understand. I am sad tonight. A friend of mine, whose daughter has Sanfilippo and is a few years older than Waverly, is going through a period of decline. She is still medically healthy, but losing skills. It is just so sad to have to watch this happen to your child. And then another family has a daughter Waverly's age who was just diagnosed with Sanfilippo the day after Christmas. I feel so much for this family. I remember that week after the news of Wavey's diagnosis. It is still so fresh. I hate that another family has to experience the horribleness of this disease.
I just wish that I could do more. I want to try to save families from the helplessness that comes with the MPS III diagnosis. There is no cure or treatment, but I am hoping and praying for one.
Friday, January 2, 2009
Waverly has a new favorite word. Pretty. In the midst of watching her lose words & skills, it is such a gift to have her learn a new word. Within the past week she has been saying "pretty" constantly. Usually, she and I are snuggling and I look right in her eyes. I love telling her how pretty she is and she caught on. She giggles after she and I both say it. It is beautiful.
Thursday, January 1, 2009
My photos uploaded backwards, so we will work our way back in time.
Oliver and his Carvel ice cream cake - YUM!
We just got home from a wonderful week in PA with family. We had a great time and the kids LOVE being with their cousins.
I was struck by such a feeling of comfort when we walked into our apartment tonight. This really is home for us.