2010 Annual Sclater Review
Well, this year was a mixed bag for us--some really great times and a few bad. I think of it as the year of Diabetes. Bailey was diagnosed with Type 1 at the end of January and we have been really focused on getting her blood sugar regulated. We put her on an insulin pump in October, which is much better. She used to scream and run away from the needles--four to five shots a day. Now, change her pump site once every three days. She still complains and squirms, but is getting better. Bribery definitely works. We have a surprise bag if she holds still. Since she was diagnosed weeks before Dustin and I were to leave on our Dominican Republic trip (gift to each other for our 40ths), we rescheduled until November. It was awesome and much needed! 8 days of eating, sleeping, drinking, repeat! Thanks to Nana and Monica who held down the fort while we were gone!
I turned 40 in March. Crazy stuff. I still feel 25 and don’t realize I am not until I look in the mirror. Haha! Bailey turned 4 in March and really wanted her party at Chuckie Cheese; so ok, they have beer for the parents : ). It was insane on a Sunday afternoon. Not again, even though she is already asking for a repeat performance.
The Angelman Syndrome Foundation walk was held in May at Dustin’s work location again. We did well and helped to raise quite a bit of money for research. Thanks to all our Jake supporters! Our JMS Charity Challenge golf tournament was held in June. Again, we did really well and were able to pay for the majority of Jake’s dolphin therapy. We went to Key Largo for two weeks in September. Jake turned 7 while we were there. He really did a great job working in class (using an iPad for communication) and continuing his work in the water with Fiji and Bella, his favorite dolphins! Bailey was in on the action many of the days, either on the dock as a mini-trainer, or in the water playing with Fiji and Bella as well. Both kids seemed to love getting the dorsal fin rides. Also, this summer Jake and Bailey attended the YMCA camp. This is a great place with wonderful people and much to do. I actually cancelled Jake’s physical therapy because he was so exhausted from camp! And the leader of the camp was able to give Bailey her shots, so she could go too.
Bailey started ½ day Pre-K at her home school, Valley Elementary, and really likes it. She doesn’t like the bus ride home though, too many big rowdy kids. Jake continues at “The Rock” (aka Rock Creek School) and continues to make steady progress. The biggest feat this year is going up and down the bus steps. He is graduating to a harness belt for the bus and no more wheel chair! This is great because he is outgrowing his chair and we’d rather not get such a bulky thing, if we don’t need it for the bus. Jake’s health was just OK this year. He had more seizures than years past, but mostly little ones. Plus, in December, we found out that he is allergic to everything they tested him for…mostly leaves, dogs, and horses. Good thing we don’t live in the woods..ha! So, he is on meds for that and we are trying to minimize the effects. Nevertheless, we live our lives to the fullest. Every day is a new adventure at the Sclaters!
We expect great things to happen in 2011 and so should you!
Sincerely—Michelle, Dustin, Jake, Bailey, and Nana Jude
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THE 2009 ANNUAL SCLATER HOLIDAY REVIEW
If I were Chinese, I’d say that 2009 was the year of the house and the car. We had many projects going on and two cars to buy, or one to buy and one to fix or junk, which is still up in the air.
Projects—Jake was granted his Make-a-Wish finally. The site was cleared and the playground constructed. It became a bigger project with trees to be hacked down, ground to be leveled, fake Astroturf to be installed, just to make the perfect place for a beautiful playground. Jake loves the swings, just as much as the neighbor kids and Bailey love the corkscrew slide.
We are still constructing “Sweetheart’s Spot.” My grandmother was gracious enough to leave us a little money, so we created a great area to relax, watch the kids play, and enjoy family and friends. We now have a HUGE concrete patio off the back of the house with a nice lounging area with a small fire pit for roasting marshmallows. In the spring it will be stained, the pillars/base will be covered with stucco, and it will be officially christened and dedicated to Helen McKim, a.k.a. “Sweetheart.” In the years to come we hope to have the funds to do custom iron work to enclose it. But in the near future we hope to have a bar area built with the sign, “Manhattan Station,” above it, in memory of Helen and Tim McKim who just loved their Manhattans.
We continue to work on the landscaping around the house (boycotting Home Depot and are now loyal Lowe’s customers..long story). We also had our driveway reshaped and top coated. Now there is plenty of room for Jake’s bus to turn around and a level surface for bike riding!
Cars—We have not had good luck with used cars. We have spent our hard earned savings on two vehicles in the past few years and both have had major problems. So, I am now the proud owner of a 2009 Honda Civic that we hope will make it long enough to be Bailey’s first car! We had also purchased a used Honda Odyssey minivan but the transmission and catalytic converter just blew, so we are deciding its fate as I write this letter.
Not much new to report on the parents, other than Dustin turned 40 in August and I will be 40 next March. So, we are off to the Dominican Republic to celebrate in February 2010. Don’t know where, but it will be some all-inclusive couples resort. Whoo Hooo! Nana Jude is holding down the fort when we aren’t there and is enjoying dating a Santa who rides a Harley. Double Whoo Hoo!
Jake is doing well with his walking, much sturdier. He can walk laps in the gym, but can’t stand still. He is still struggling with pulling to a stand and getting back down to the ground, but is getting much better at standing from a chair and is actually pushing himself back into a chair as he sits. His eating is still messy. Although he knows what to do with the utensils, hands are more fun. We continue to work with the communication device and he is getting better at isolating his finger to hit the keys, but definitely a work in progress. The big news is potty training. He gets it, but we don’t quite have the timing. In the morning we have a pretty good shot, but not the other times of the day just yet. We just received a special seat though a grant and are hoping that will make him more comfortable, but we still have the problem of concentration when the toilet paper holder is so interesting! We only had one hospital stay this year, but quite a few ER visits. We have a great rapport with the doctors and one lets us call the ER before coming, to see if it is absolutely necessary! Nevertheless, the pneumonia, H1N1, and seizures can’t keep this boy down. At age six, he is bigger and stronger than ever (4’1” and 70+ lbs.), and Bailey has the bruises and bald spots to prove it. Bailey often introduces Jake… “This is my big brother, Jake. He doesn’t talk and he pulls my hair.”
Bailey has become quite the chatty negotiator. When she wants something she finds many ways to reword her request to address our negative answers. She is relentless and when all of her clever requests are denied, she says, “PLLLEEEEAAASEEE.” I tell her that won’t work with a judge and it won’t work with me either! She is really into Christmas this year. She saw about six deer run across the road and she reported, “They are exercising so they can pull Santa’s sleigh.” When we pointed at the blow up Santa in the lawn, she said, “That is not the real Santa, just a decoration.” When asked how she knew, she gave me the “duuhh” look and said, “Because he doesn’t move.” As one last lesson for all of us… When we were eating Chinese food the other day, she pulled apart her cookie, and said with complete surprise, “Hey look! There is a fortune in my cookie.” When we all started laughing, she looked at us and said, “Stop judging me.” So, we laughed again. Then I read her fortune…"An important word of advice may come from a child.” Touché.
Happy Holidays to all of our friends and family. Your support for our family is overwhelming! Jake walked across the Finish Line at the ASF walk by himself, he took double dorsal fin rides by himself, and he is a great kid because he has the support of so many wonderful people! Thank you! Wishing you an AWESOME 2010!
Sincerely,
The Sclaters and Nana Jude
The Sclater 2008 Holiday Newsletter
Even though we were in the ER (waiting for tests) when I began this letter, I realize how lucky we are. Jake is fine, with a little croup, fever, seizure, and a ride in the ambulance, but he always does it with a smile. He is our tough, big boy/Sugar Man that can light up a room and remind people to weather the bad times and celebrate every other moment. A co-worker said that she and others are “all in awe of your spirit and positive energy with Jake and wish we could have more of it ourselves. In other words, I have to stop complaining so much!” I am glad that our family inspires people (awe is a strong word). We just do what we do. Yes, we have our days where we ask why, but that is not productive or helpful. So, I try to quickly get over it and enjoy what we do have, and that is a beautiful, happy boy (that just happens to end up in the ER sometimes) and wonderful, funny, little girl. From the kids I see weekly, we are so lucky; and for those whose kids have no big issues, you are unbelievably blessed because that is a miracle! So, just enjoy it and try not to let the stresses of daily life cloud the good things.
2008 Highlights:
Bailey turned two in April—cupcake party (they are her favorite). She will now tell everyone that she is “two and a half.” A woman started to ask Bailey her name and she cut her off, “two and a half.” I guess she knew that was coming next.
Jake turned the big boy “5” in September, even though he looks about 7 due to his size. I did a test online and it says that Bailey will be about 5’11” and Jake 6’ 6”. I am sure there is no doubt that we would grow big kids, but he would be the tallest Angel I have ever seen. He started full-time Kindergarten at Rock Creek School. Although he misses his Brunswick buddies (above), we felt a change would do him some good. So far, so good.
For his birthday, we had a party at the golf course at the end of the Third Annual JMS Charity Challenge (next one will most likely be in June 2009). It was a beautiful day and we raised some money for dolphin therapy in October. We only had one week with the dolphins, but Jake had two this time, Fiji and Bella. (pictures on the home page). Once he got into the routine, Jake did well following instructions and completing tasks to get more dolphin time. He really demonstrated his ability to listen and make choices. He also enjoyed the sensory garden with all the wind chimes, which sparked an idea. He was granted a Make-a-Wish and the thought is to do a handicapped-accessible playground in the backyard. But instead of a traditional clubhouse, we are hoping to do a sensory gazebo with tactile things for him to touch, lights, and musical elements, like wind chimes. It should be completed in the spring.
Bailey also enjoyed kissing and swimming with the dolphins, as well as being the fearless assistant on the dock. Ono, the seal, was also a favorite, along with the touch tank of sea animals. On the Florida trip, she also learned to doggie paddle. We need to get her back in the pool quick, before she forgets.
Bailey loves Dora, Diego, and Barney. Elmo is still cool, but has taken a back seat. She enjoys going to the library with Nana and playing with Shelby in the afternoons. In January, Bailey will start at Little One’s Daycare two days a week. She is doing very well with potty training and loves to get a treat for her efforts. She’ll go in there and try for a long time, just to get another treat. She really gets the concept, but sometimes we almost have to bribe her to get her off the potty.
Nana is doing well. Even though she seems to have caught Jake’s croupy cough, she loves her Jakey. She is making friends and seeing the area. I think she enjoys the breaks on the weekends more and more now that Bailey is walking and talking and into everything all day long, no more naps! They love to go shopping together and story time at the library.
Dustin and I have found a few nights to get dressed up and go out on the town in Frederick or Leesburg (see below). But during the day,
I continue to work at the Federal Communications Commission and love it. The people are great, and the work is interesting, but it is mostly the people and the flexibility that makes it a great gig! I continue to be involved in a few groups that focus on special needs issues, hoping to find more answers, and eventually create more solutions, to make it easier for special needs parents in the future. Dustin is still working for Amica Insurance and enjoys it. He just returned from a three-week stint in TX on catastrophe duty, cleaning up remaining claims from Hurricane Ike. Of course, three weeks allowed him to catch up on all his missed sleep and TV time, but he also found time to help pack boxes for the soldiers with his new found friends at the restaurant near the hotel.
With all that is happy, there is a sad note. My paternal grandmother, Helen “Sweetheart” McKim (1917-2008), passed in April of this year. She was a spunky lady that loved her family, game shows, her pets, trips to Atlantic City, chocolates and especially, Manhattans. She lived a long and gracious life at 1744 Gross Avenue, Pennsauken, NJ. She will be missed by us here and embraced by our loved ones above. They are all still celebrating the Phillies as 2008 World Series Champions! Go Phillies!
Wishing you all a wonderful 2009!
XOXOXO,
Michelle, Dustin, Jake, Bailey and Nana Jude
