Monday, March 2, 2015

Happy Chinese New Year 2015!

Happy Chinese New Year!!! Sorry it has been a couple months since writing. We continue to settle into our new Portland home and surroundings. It has been quite a warm and beautiful winter, feeling like spring many days, and the cherry blossoms are gorgeous everywhere. Most everything is in place now, friends and memories are being made, and Henry continues his medical care at Shriner's and OHSU. There are a number of appointments coming up so see below to see the schedule and keep them in prayer.

At the end of January, our family had a fun day at the Evergreen Aviation & Space Museum with waterpark. It was a day especially for families with special needs, so some extra activities were available for Henry. He loved seeing all the planes and space equipment, especially getting inside and pretending to fly some. Star Wars characters were special guests at the museum and he wasn't quite sure what to think of them. The older boys loved them. One of my favorite photos of the day was Henry in an astronaut costume. Seeing him enjoy the wave pool was extra special too. That was a really great time together!
February was busy with doctor visits as Shriner's continues to look at Henry's back but now also at his hips, legs, and feet. He is going to the physical therapist every other week for a couple months to see if his week upper thigh muscles can be strengthened for easier and longer walking mobility. One of his highlights is riding a modified tricycle, a great exercise for him that is fun and easy on his joints. He also likes that he can go faster:). We are in the process of looking for his own trike to enjoy some independence outdoors. Some of the other things Shriner's is doing is research on his growth rate through semi-annual blood and urine testing, genetic testing to firm up his diagnosis, analysis of his hips and legs while walking in lieu of possible surgeries, testing of his bowel and bladder due to mid-spine compression, and OT appointments. We finally have insurance in place to begin the process of getting general medical care for Henry (and all of us), but we will definitely have Henry at OHSU and Doernbecher's because of his complex condition.
Some other fun activities for Henry recently have included a "hulkmania" birthday party he attended, visiting his first Portland fire station, returning to Montesano for a visit with friends, going to the Portland Children's Museum, and beginning children's choir at church. Just on Saturday, we attended the local library's Chinese New Year festivities and then his school's cultural fair following. It was a great time connecting to Henry's birth culture and then learning about new ones. Henry continues to make some sweet friends in his preschool and church classes. We have also started getting in the local Little People of America Chapter and hope to continue making more friends with families "like ours."
In case you were wondering, Henry still really enjoys playing fire fighting, but he has also added police, military, dispatching, and ambulance to the mix. This photo portrays Henry's emergency station he just set up the other day...all ready for any and every situation! We still check out a huge number of books at the library every couple weeks, and whatever Henry learns about, He gets down on the floor and role plays it. His imagination, love for learning, and memory are incredible.

We had a good IEP meeting with the local school district last week to provide a few PT services this year at his private preschool and then more services for kindergarten next year. We have also put down an offer on a home very close to here and to his new school, which we are excited about because it has an accessibility ramp in front and other accessible features inside, as well as a fenced in backyard. For Henry, it is GREEN! That's all he needed to know:). And in a few weeks, we are looking forward to Henry's first camp experience ever with his brothers and myself at Camp Korey for their skeletal dysplasia family weekend. Fun times!

We have a lot of colds and other strange bugs going around our house since right after Christmas. Henry has another head cold but is hopefully on the mend now. We so appreciate your prayers even as you may have been wondering how things are going. We are so blessed in so many ways, and thank God daily for the love and care of family and friends, for our church, and for His Son Jesus Christ who gives life abundantly in every way. In closing, here is Henry's upcoming medical schedule to pray over. Thank you so much!!! Love from all of us.

3/12 - Urology testing
3/16 - Bowel testing
3/24 - Full spine MRI
4/2 - Shriner's visits with spine and dysplasia doctors