My little boy turned 4 years old today. I cannot believe how quickly time is passing.
Thursday, December 30, 2010
Monday, December 27, 2010
Waverly and Oliver had a wonderful time opening Christmas gifts. Wavey really liked her new stuffed Barney. It sings the "I Love You" song. Oliver got a bouncing Tigger toy that was a huge hit. The biggest excitement came when the kids opened a gift bag filled with jumbo chewy necklaces.
Here are a few photos from Christmas Eve. We took the kids to a service at a church that has a children's program for kids with special needs. Waverly & Oliver had a ball.
Thursday, December 23, 2010
It has been a busy week preparing for the holidays. I have tried to take advantage of the short time the kids are both in school to finish up last minute errands and shopping. I think everything is wrapped and under the tree, ready for Christmas morning.
On Tuesday, I went to the kids' school for Waverly's holiday party. I coordinated everything and I think it turned out fairly well. The kids decorated cookies, colored wooden ornaments, made Chex Mix and stamped cards. It was a lot of fun. I enjoyed watching Waverly interact with her peers. I was also able to get to know Waverly's 1:1 a little better. She is incredible! I am so thankful that she is working with Waverly. She actually told me the cutest story. A little boy in the 1st grade class that Wavey joins for music, PE, library, etc really seems taken with Waverly. He came over to greet her and told Erin (the 1:1) that he loved Waverly. Then he told her that Wavey is beautiful. He may be my new favorite kid!
We just returned from a wonderful evening. We went to Chipotle for burritos and then off to a local state park that has a Christmas light display. We stopped for cocoa along the way. The kids actually enjoyed the lights and kept looking out the windows - especially at the ones that moved. It has become a tradition for us.
Wednesday, December 22, 2010
Sunday, December 19, 2010
Matt and I rediscovered some old videos last night. This one was filmed days after we moved to London in 2007. Hearing Waverly sing the theme from "Winnie the Pooh" after all these years made us so happy. She hasn't sand this song for years, and she can't talk any more. She's a little hard to understand, likely from her hearing impairment. Nevertheless, it is a stellar performance by our beautiful little girl. Enjoy!
Friday, December 17, 2010
Oliver was carrying around a puzzle that is housed in a little suitcase-like box. It was a puzzle I bought for Waverly when she was 2. It has various zoo animals on it - she used to love going to the Columbus Zoo. It is a large floor puzzle and I have a lot of memories of doing this particular puzzle with her. Good memories.
All of a sudden, Oliver tossed the box onto the floor and it broke apart. Ugh! I was instantly upset. For a moment at Oliver. And then at the sadness this little puzzle reminded me of.
I miss Waverly bringing me the puzzle. Helping to unlatch the box. Handing me the pieces. Dancing on the puzzle before I had a chance to finish it. I think she thought the puzzle was her own little portable dance floor.
She used to say "puzzle". I miss that, too.
The box lid will soon be taped back on with packaging tape. It will remain in my possession for as long as possible. A reminder of happy times.
We had our first snowfall yesterday. Oliver's teacher took the class out to explore the snow before dismissal. She snapped this photo of him and I love it. The little guy loves *s*n*o*w*.
Thursday, December 16, 2010
Waverly has *VERY* quick hands. If she thinks something is food or simply wants to put it in her mouth, she is lightning fast. We are all so careful with her, making sure we don't have anything in her reach that could harm her or cause her to choke. Today in school during snack time, she grabbed a plastic straw wrapper and stuffed it in her mouth before anyone could notice. She started to choke, and her 1:1 & teacher assumed it was just her snack. They came to her aid and thankfully her teacher noticed the straw wrapper in the back of her mouth. She was able to reach in and pull it out quickly. Phew!! Thank God for attentive staff.
Oliver made this gingerbread house and tree in preschool. Graham crackers are covering a milk carton (clever!) and the tree is an ice cream cone covered in icing. His teacher said he had a difficult time putting the candy on for decoration, he just wanted to eat. But eventually he got the hang of it.
Wednesday, December 15, 2010
Oliver has been granted his wish!! We will be heading to Disney World in February for one week. He is going to have a wonderful time. He is at such a great age for this trip. He loves all things Mickey Mouse, Donald Duck, Tigger & Cars, so this is the perfect wish for him. Let the countdown begin!!
Saturday, December 11, 2010
We ventured down to the National Harbor for the Christmas Market and other holiday excitement. Fortunately, it wasn't too chilly today. We had a great afternoon.
Matt snapped these photos of the kids enjoying snack time together. They both love to sit at the little table for a treat. Wavey's reach is a bit too long though and Oliver usually ends up with a half snack.
Friday, December 10, 2010
Christmas shopping tends to be an emotional experience for me. I ventured to our local Toys-r-Us yesterday, hoping to wander the aisles to find some gift ideas for the kids. Waverly is 7, however I typically find her toys in the baby section. Oliver will be 4 in a few weeks and I can still shop in the preschool area, being careful about any toys with small items they could choke on. I had some ideas for Oliver going in, but no clue for Wavey. And then, jackpot!! I found a stuffed Barney that sings the "I Love You" song. She loves that song and we sing it to her all of the time. She used to sing all of the words....years ago. She also loves Elmo. I found a "Tickle Me Elmo" that giggles and vibrates. And a cute Elmo cell phone that sings the theme song for "Elmo's World".
These may not be the toys that most parents are excited to find. Noisy. Some think they are annoying. Commercial. I see them as perfect. Small items that will bring such joy to Waverly on Christmas morning. These are not the typical toys for a 7 year old girl, but my little girl is anything but typical. She is extraordinary!
Tuesday, December 7, 2010
Yesterday I spent some time decorating for Christmas. I lit my vanilla frosting candle (much simpler than baking) and played my favorite holiday album ("The Darkest Night of the Year"). I opened the trunk that holds all of our decor, took a deep breath and dove into the holiday spirit. I decided to make things a little easier this year. Just lights on the tree - no ornaments for the kids to pull off and put in their mouth. I can't find a safe place for our stocking holders, so I took out my hammer and hung them on the wall. The apartment feels warm and cozy. I love the glow of the Christmas lights. My spirit feels better.
Sunday, December 5, 2010
I have been feeling so sad the past few days. My emotions have been right at the surface and any small thing can cause the tears to flow. I received a report from Children's Hospital and it was the first one to list Waverly as 7 years old. I cried. Oliver attended a birthday part yesterday afternoon. When we left, I cried.
Even preparing for Christmas has been difficult for me. I haven't decorated or put up a tree yet. I just have had zero desire to celebrate. And the kids are unaware that anything special is coming. I think that it part of it. I am not sure why I should even bother.
And then tonight, I read about a friend. Her daughter passed away 3 years ago tomorrow. She had Sanfilippo. She was a beautiful little girl - only 12 years old.
I was reminded that I am fortunate enough to have Waverly & Oliver here with me now. It is okay to be sad. It is sad. However, I need to take advantage of the short time I have been given with them. That means creating memories and moments with them, so I can hold onto them in the years to come.
The sadness is still intense right now. The tears are flowing as I type. But I am blessed to go kiss my babies good night, smooth back their hair and pull up their blankets to keep them warm on this wintery night.
Friday, December 3, 2010
Waverly's teacher sent me some photos from her school birthday party. This is my favorite one. Erin, her 1:1, is showing Wavey her birthday cake. Wavey knows a good treat when she sees it.
Thursday, December 2, 2010
This morning Oliver's preschool attended a holiday concert at one of our local high school. The band puts on a fantastic show for young kids. They have kids dressed up in costumes of popular children's characters - Pooh, Tigger, Dora, Elmo, Big Bird, etc. The band plays the theme songs associated with each character, plus familiar Christmas songs. They teach the kids about slow/fast, loud/soft, the different instruments that make up a band. It was a wonderful show. Oliver sat beautifully while we waited for the concert to begin. Once it started, he was on his feet clapping, climbing and hugging. All in all a successful experience.
Wednesday, December 1, 2010
I often say that it is the little things that bring me joy. Those same little things can also bring profound sadness. Oliver has been obsessed with the Dora book "What Will I Be?" for the past few weeks. He takes it back and forth with him to the car, he has taken it to school and doctor appointments. For some reason, he has grown very attached to this board book. I didn't think anything of it until Matt pointed out the sad irony.
What will I be when I grow up? We have all asked ourselves that question....I still ask myself that question. Matt and I often say that Waverly & Oliver would be dentists if they could - Wavey loves to touch our teeth and Oliver loves a Dora book about going to the dentist. I hate the conditional IF in that sentence.
To Oliver he is simply enjoying the pictures in a book, but to me it is a constant reminder that their lives are much too short.
Tuesday, November 30, 2010
Last night when I went to check in on Oliver before I went to bed, I noticed that he was taking very shallow breaths. This morning he sounded much worse - very wheezy and raspy. I called the pediatrician and thankfully she is always willing to fit the kids into her busy schedule. I had fears of aspiration or pneumonia, but it turns out to be allergy induced asthma. We are now the proud owners of an inhaler and spacer. He is also on a new allergy medication. He sounds better already. Phew!
Sunday, November 28, 2010
We headed up to PA to spend Thanksgiving with my family. We feasted on potato filling, turkey and sweet potatoes. (Oliver ate a raspberry jam sandwich - picky eater.) We woke up Friday morning to both Matt and Oliver sick with a stomach bug. Matt recovered fairly quickly, but Oliver was sick the entire visit. He spent most of the long weekend in his pjs watching movies and snuggling on the couch. Matt and I were able to take Waverly out on Saturday for some shopping at a Christmas Market. Knock on wood, Wavey and I haven't been struck with the bug.
Tuesday, November 23, 2010
We are the proud new owners of a huge box of *Simply Thick*. I went to the pharmacy tonight to pick up our first supply. We will add 2 packets to each of Wavey's sippy cups, thickening her drink to a nectar like consistancy for easier swallowing. It is supposedly tasteless. We shall see tomorrow how she tolerates it.
In other news, I attended Oliver's "Friendship Feast" this morning. It was quite a busy day for him. He had both Occupational Therapy and Physical Therapy. His therapists worked him hard, lots of tears were shed. Then we went to school, which is not his typical routine. He ususally doesn't attend Tuesdays. But we wanted to participate in the special day. He cried for the first 30 minutes he was with his class. I was with him, but he was so concerned that I was going to leave he was inconsolable for awhile. Once the table was set and he realized it was lunch time, he was absolutley fine. It was so nice to watch him with his classmates and teachers. He waved hi a few times and he was very excited for circle time at the end of the day. He enjoys singing the "Goodbye Song" and moving his photo from the school building to the car photo. He is such a good boy.
Sunday, November 21, 2010
About a year ago a local reporter wrote a story about Waverly & Oliver in our weekly paper. A few days after the article was published we received an email from a local woman whose son passed away from Sanfilippo 25 years ago. The moment she saw Wavey & Oli's picture, she recognized the full zips, protruding tongue and button nose. Immediately, she knew they had Sanfilippo.
We began exchanging messages and about a month ago, Oliver & I met her for lunch. We had such a lovely time sharing stories about parenting a child with MPS. As Oliver dashed around the patio area, she knew exactly how to wrangle him back onto the sidewalk. Experience.
Last night, she and her husband invited us over to their home for dinner. We had so much fun. There is an understanding among Sanfilippo families that is so special. There was no behavior explanation required. Wavey stayed near, while Oliver enjoyed exploring and finding his favorite walking path. We saw pictures of their son and heard stories about his childhood. They noticed similarities between Oli and their boy - both physically and behaviorally. I think Oliver brought back a lot of memories for them. Matt & I appreciated the opportunity to talk with another couple who has been through this. It was a wonderful evening.
Thursday, November 18, 2010
Waverly did a wonderful job at her swallow study this morning. She never refuses food...even when it is laced with barium. The results were as expected. Her swallow has moved farther back into her throat, causing the gagging and choking. She is having the most difficulty with thin liquids. Trace amounts are entering her trachea, which is not good. We will have to begin using *Simply Thick*, so we can make her drinks more like a nectar consistency. I have already emailed our doctors for the prescription, so hopefully we will make this change soon.
I cannot believe she can no longer safely drink milk, water or juice without having to add a thickener. Sad.
Wednesday, November 17, 2010
After a few days of illness, everyone is healthy again. Poor Waverly spent her actual birthday home sick from school with a runny nose and fever. Thankfully it was a fast moving bug and within a few days she was back to her happy self.
Tomorrow morning I am taking her to Children's for a "Modified Barium Swallow". I think this is her third one. It is quite an easy procedure. She eating a few varying textures of foods that are tainted with barium. As she chews and swallows, they take "photos" to check for any problems. Her two previous studies were basically normal. We are confident tomorrow's will show some significant changes. This information will help us make the necessary decisions regarding dietary changes and the eventual feeding tube.
We met with an amazing speech and language pathologist who has been assisting us on this new path. We have been putting her suggestions into practice - switching to whole milk and yogurt, pureeing foods to an applesauce consistency, adding olive oil or butter to increase calories, brushing her teeth more often, taking more breaks between sips. We anticipate needing to add "Simply Thick" to her water or juice, so we don't have as many choking episodes.
All of these changes feel like they are coming too soon. I wasn't ready for this. Not yet. She just turned 7. Time is passing by too quickly.
Sunday, November 14, 2010
We had a gorgeous day for a birthday party yesterday. We had about 50 friends join us for a party at our favorite park. We had lunch, laughs and a yummy birthday cake. The highlight was singing "Happy Birthday" - Wavey's favorite song. She beamed throughout the entire song. Here are some photos from our celebration.
Friday, November 12, 2010
Oliver loves his new bed. He spent most of Wednesday evening climbing in and out of it. He slept beautifully that night - 11 hours straight. I even had to wake him up to get ready for school. He was nicely tucked under his blankets, with his ducky in hand. He continues to want to climb up during the day and chill up there. He takes toys, books, balls and scatters them around.
I am so thankful that we were able to get this bed covered with insurance and our waiver. It is going to have an incredibly impact on our family. We can rest easily at night, knowing he can't fall out of bed and get hurt. He is beginning to have the sleep disturbances common with Sanfilippo. Hopefully, this bed will make that phase a bit easier for all of us.
Wednesday, November 10, 2010
Oliver has a big boy bed!! His Sleep Safe bed arrived this afternoon. They assembled it in less than 45 minutes and we love it already. It is a little high, so Oliver is using the piggie bench to help him climb in and out - already mastered this today. He climbed right in and explored his new dinosaur blankets and pillows. All evening he wandered into his room, played on his bed for a few minutes and then ran back into the living room. He seems very excited.
Oliver using the bench to climb in and out.
The bed with the 2 side panels folded down.
Oliver getting under the covers.
All tucked in.
The bed with the side panels raised for safety.
Tuesday, November 9, 2010
Tonight is Oliver's last night in a crib. He is much too big for it, but it contains him when he is awake in the middle of the night. Tomorrow afternoon the medical equipment folks are delivering a Sleep Safe bed. This bed is like a hospital bed, but so much more. We are getting the *high* version. It is a standard twin size, with really high sides so he can't climb/crawl out of bed. Almost like a twin size crib. He will be able to wake up and move around the bed, play with his stuffed animals and babble. However, he won't be able to get out and wander. It will keep him safe and allow Matt & I to have peace of mind. The main side is clear, so he will still be able to see. That side folds down for easy in and out. The bed itself can raise and lower as well.
I bought him new dinosaur sheets, blankets and pillows. I will take photos tomorrow.
Hopefully Wavey's bed will arrive soon, too.