Waverly was the most beautiful ice cream cone and Oliver was an adorable Winnie the Pooh for Halloween this year. We took them trick-or-treating this year for about an hour. Wavey enjoyed walking around the neighborhood and seeing people. Oliver quickly realized that treats were involved and learned to reach into the bowl to select a piece of candy. He was really good about putting the candy right into his ghost bag. It was so much fun and created a night full of memories.
Sunday, October 31, 2010
Friday, October 29, 2010
I became *that* mother today.
Waverly had a field trip with her 1st grade peers this morning. This was her first non-walking field trip and I was a bit nervous.
I ended up driving over to the school to watch the kids board the bus. In addition to this being her first big field trip with the mainstream kids, it was also her first time riding in her wheelchair on the bus and using the lift. One of the aides from her classroom accompanied her. I just had to see that she was okay. Silly, I know. But I felt so much better as I watched her ride the lift onto the bus.
Her teacher wrote this afternoon to say Wavey had a lovely time. She enjoyed the entire adventure and returned to her classroom with all smiles. Phew!
Thursday, October 28, 2010
I wrote earlier this month about Wavey's continued problems with eating. I finally took the Cuisinart out of the cupboard and started pureeing her dinner. I have been making a lot of pastas for her, since they are easy to chop up. I throw some cooked chicken and veggies in for a balanced meal. I just can't get to the point of pureeing a real meal - pork, potato and broccoli. It sounds so gross all mashed up into one bowl. However, I am sure I will get there soon.
I cried the first time I mashed up some spinach & cheese ravioli. I just can't believe we have reached this point. I remember saying to people when they asked about the progression of the disease that eventually children with Sanfilippo lose the ability to swallow and walk. And then I find myself her - pureeing her dinner and owning a big pink wheelchair.
Wavey loves the new routine. She has been finishing all of her dinner. She isn't gagging and coughing anymore during mealtime. She can simply enjoy her food and we can relax knowing she safe.
Monday, October 25, 2010
We took the kids to the Halloween parade on Saturday night. We dressed Oliver in Wavey's old Winnie the Pooh costume. He looked adorable and seemed to really enjoy wearing it. Wavey was also fascinated by it and kept grabbing at his ears. Oli was a hit and had a ton of candy thrown his way during the parade. We had a great time.
Friday, October 22, 2010
We met with our Make-A-Wish volunteers last night. They are the same 2 lovely ladies who helped grant Waverly's wish. The bought a Cinderella book for Wavey and some Cars books for Olive r- perfect! After much thinking we have decided to go to Disney World for Oliver's wish. He loves all things Disney - Mickey Mouse, Winnie the Pooh, and Cars. We intended to wait for his wish, but we decided to go forward. We wanted Wavey to also enjoy the trip and be able to take full advantage of the parks.
We should find out in a few weeks if the trip will be granted during our requested week. I am already getting excited to make some memories.
Thursday, October 21, 2010
Oliver's class had a field trip to Pumpkinville today. I was able to go along for the morning - my first chaperone experience. So many moms were there, that I was able to stick with Oliver and explore. We saw some very friendly animals, Oli rode a pony, went down a big slide, wandered through a hay bale maze and took a tractor ride. I was also able to meet some of the other moms, which was wonderful.
Oliver's teacher helped the kids make these jack-o-lantern tees for the trip. I thought it was such a creative and adorable idea.
Wednesday, October 20, 2010
As I was waiting for Oliver to finish his morning preschool session, I sat in the car listening to the radio and catching up on emails. One of the lunch periods came outside for recess and I immediately noticed a little girl I know. She is in Wavey's class, but spends time in the mainstream classroom as well. She wandered the playground, basketball court and kickball field. She loves to walk and explore. I started crying, watching this lovely little girl wander among the other children. I didn't notice anyone say hello or invite her to play with them. And then it happened. From the kickball field a little girl yelled "Hi "Mary" and ran over to give her a hug. It was just a short exchange, but my heart swelled with love for these 2 girls. It was a simple moment, just a greeting. But to a mom who has children with special needs, it meant the world to me.
My mind went back to the hallway on Waverly's first day of school this year, to the little girl who waved and said "Hi Waverly" as I walked her to her classroom. I still get tears in my eyes and a lump in my throat when I think about that.
To the parents out there who read my blog, please remember to use the moments when you are out with your children and you interact with someone who has a disability to make it a teachable moment. Most kids are afraid of children with special needs, simply because it is unknown to them. It is not easy, but how incredibly proud would you be of your child if s/he was the one who greeted a child with a disability so warmly.
Sunday, October 17, 2010
We took the kids to the Maryland Renaissance Festival today. It is such a fun fair, with some excellent people watching. The kids enjoyed the jousts, juggling, fool shows and crowds. Before we left, Oliver played the 16th Century version of "guess my weight". The guesser was sure no 3 year-old would weigh more than 1 bag & 3 stones. Boy, was she wrong. He won and received a free lemonade.
Friday, October 15, 2010
It seems that overnight Waverly's feeding issues have worsened. The changes had been occurring slowly, but the past month has been dramatic. I am not ready for this.
Waverly has been gagging a lot while she is eating. She isn't chewing her food properly, so then she is chocking on it when she swallows. She is also holding food in her mouth - taking a bite of banana, but just moving around her mouth with her tongue. It is taking her a much longer time to finish a meal.
I spoke with her teacher about this last week. I knew they would being seeing the same issues there, but I needed to here it from them. She said that they have seen changes since school started. Her teacher was incredibly supportive, knowing that this is a difficult new phase.
I am slowly making the necessary changes to her diet. She still enjoys crunchy snacks - goldfish, pretzels, graham crackers. She doesn't seem to have any issue with a crunchy texture. She loves her pureed textures - apple sauce, mashed bananas, cut up pasta and yogurt. It is the in between textures that seem to be causing the problems - breads, pieces of fruit, pizza, meat. I think they are soft enough that she is simply swallowing them before she chews them adequately, thus causing her to choke.
I modified her dinners this week. I haven't pulled the Cuisinart off of the shelf to begin pureeing her foods, but I have started choosing items that she will be able to swallow easily.
I knew this was coming. It is how the disease progresses. But it doesn't get any easier. This change has been especially difficult for me. Wavey has always found such joy in food. Thankfully, with some modifications, she can still enjoy the flavors she loves so much.
Tuesday, October 12, 2010
***Someone needs to invent a double special needs stroller. While there are not many of us with this need, you would make some exhausted families quite happy.***
The kids had doctor appointments today at our local Children's Hospital office with our Physical Medicine doctor. She is wonderful. She manages the kids' mobility and also assists us with durable medical equipment needs, like Wavey's feeding chair, wheelchair and orthotics. Trying to wrangle both kids by myself is a challenge. I put Waverly in her wheelchair and Oliver held my hand. He is still a good listener, but he is becoming more and more hyperactive. While in the waiting room, he ran across back and forth dozens of times. (Thankfully it was empty, so he could do this safely.) The most difficult moment was trying to get Wavey to stand on the scale. She doesn't like scales, so it requires a lot of effort on my part to keep her standing long enough for her weight to be measured. While holding on to her, Oliver took off down the hall. Thankfully he only made it to the waiting room, where "Jungle Junction" grabbed his attention. (Thank you, Playhouse Disney!)
Oliver is still doing great. There wasn't much change since our last visit, which is excellent news. No need for orthotics...yet. He needs to continue wearing his inserts and hopefully with stretching and exercise he can maintain his range of motion for another 6 months. Waverly had definitely regressed. Her stamina has decreased and her range of motion has decreased. She hasn't been walking well in her orthotics, but the doctor was able to change the structure of the orthotics to make them more useful. We immediately noticed a change in Wavey's gait, so hopefully we will be able to see some improvement in her walking ability.
Monday, October 11, 2010
As part of Waverly's Make-a-Wish trip last year, she was given an "amusement park passport" entitling our family to visit certain amusement parks for free. Her pass expired on Sunday, so we thought we would use it one final time to visit Busch Gardens in Williamsburg. We had a blast!! They have a Sesame Street area of the park for kids which was fantastic. They had kiddie rides, a live show and a sprinkler park.
Oliver relaxing in the grass
Oliver loved exploring the grounds
Close-up of a smiley Wavey
Oliver meeting Bert & Ernie
Waverly hugging Bert
Oliver on a little boat ride
Matt and the kids buckled in for a drop ride
Waiting at the top for the drop
Oliver loved it - Waverly not so much
Pretty girl on the carousel
Oliver clapping for the Sesame Street show after playing in the fountains
On Saturday, we attended an MPS walk for our friend Mackenzie. She has Sanfilippo, too. It was a beautiful day for a 5k. There were so many people there to celebrate Mackenzie and raise money to find a cure. It was incredible. The different classes at her school made posters about how much they love her - brought tears to my eyes. We had a fantastic time. I am inspired to try to hold a similar event in our area.
Tuesday, October 5, 2010
This afternoon I picked up Waverly & Oliver's new hearing aids. I have actually been looking forward to their arrival for over a month. Their old hearing aids are 3.5 years old and they have served the kids well. However, it was time for an upgrade. The new hearing aids are lighter and smaller. They also have a little blinking red light to let us know that the batteries are working. It's the little things that make life a little easier.
I was sad to pack up their old hearing aids. We are keeping them as spare sets, just in case. They were our first step into *Holland*, into the special needs world. Oliver was only 7 weeks old when he was fitted with them. We picked him out a blue pair with clear ear molds. I remember crying for him - worried that other kids would make fun of him, that we had to work incredibly hard to give him the best communication base, that he would always been seen as different. Waverly got a bright pink pair with clear ear molds. I was happy that her hair would hide them, so people wouldn't see the hearing aids right away and treat her differently. I also remember the stress of our health insurance plan not covering them and paying $8000 for them, which we couldn't have done without the help of our family. (Thankfully, our insurance plan now covers hearing aids. I would like to think that our letter of petition helped to change their policy.)
I thought it was the end of the world.
How times have changed.
Sunday, October 3, 2010
Matt's parents were in town for the weekend. It was such a perfect autumn day, we decided to take them to a local orchard for an afternoon of apple picking. Both of the kids enjoyed walking among the trees. Waverly was especially happy there. I came home with 1/2 bushel of Winesap, Rome, Fugi and York apples. I have some applesauce simmering away and we had apple dumpling for dessert.
Here are a few of my favorite photos. I love the ones of Waverly walking.
Saturday, October 2, 2010
We have had a long week of runny noses and coughing. The kids made it 3 weeks in school, before they each caught a cold. It has been a week and they are still not back to normal, but they definitely on the mend.
Maybe it is because they aren't feeling well or maybe it is because I jinxed myself for telling the geneticist that they have been such good sleepers, but this week has been rough. It took us 4 hours to get Waverly to fall asleep one night. Another night she was awake for the day at 3 am. We are adjusting her medication, hoping we can find another combination to allow her to get the sleep she so desperately needs. The past two nights have been much better. Oliver is waking up a lot in the middle of the night, but thankfully he is still in a crib. He is happy to just lie there and chatter.