Friday, September 25, 2015

Back to School!

Wow. It has been since May that I wrote a blog post. In fact, I have quite forgotten I had one until just recently. So much has been going on; so many good things, big and small, that I have been quite enjoying them!

We had a fantastic summer, kicked off by a most wonderful vacation to Florida and Louisiana. We flew in and out of New Orleans, drove the Gulf Coast to Destin for a few days to see a niece get married, then drove to Grand Isle, LA, to spend more time with family there before heading home. Highlights? The beach, beach, beach! And so many precious memories made together.

Not long after the trip, we moved again! The Lord provided a home to buy, so in July, we settled into our new house just a couple miles from the rental one. We are loving it and Henry has his own room!

The Super Birthday Boy!
Sled Hockey
Other summer highlights were Vacation Bible School at church, Pre-teen Action Camp in which our whole family got to be involved, Henry's 6th birthday (Superman themed), Fish Fest with great music, a sled hockey clinic for Henry in which he made the news, the Oregon State Fair, the Mt. Hood railroad train ride, and more. School finally started on July 10th for Henry and he is adjusting so well to full day, every day Kindergarten. God put everything together perfectly, like he always does, to ensure Henry's care and opportunity to learn and grow like the other students, and he just got transferred to a 504 plan from an IEP plan. We are so thankful for all God has done and know it is going to be a great year for Henry.

We also just had great news that the request for a customized power wheelchair for Henry has been approved. He should have his new wheels in about a week or so. We are super excited for this and know it is another big provision from the Lord. I will post pictures when it comes! He will use it at school mainly.

Henry also got new glasses, similar to his green ones except they are charcoal gray. There is no word from Shriner's at this point about any upcoming surgeries, and Henry seems to be doing great, so we are just trusting God with all of his needs and glad that his body can be allowed to grow and strengthen at this time.

Henry has joined Trail Life USA with his big brother! We are excited about this opportunity for him to make new friends and learn about the outdoors and lots of other great things. The troop is working to accommodate his special needs as well. There are definitely perks in living in the larger city...many more things to do and experience, especially with Henry's accessibility needs. We are just really blessed in so many ways and most importantly, with the love of Christ and of family. Yes, we are so thankful for family. And thankful for all the friends who love and care for ours! Blessings to you all.

Sunday, May 10, 2015

One Blessed Mommy (Important Update at the End)

I thought that I would share my favorite things about being a mommy to Henry with you all. All three sons are my pride and joy, but since this is a Henry blog, I thought you might enjoy reading some of the ways he lights up our lives. Just the fact that I get to hold him, love on him, look at him and talk to him in person each day is such a gift. It is an incredible privilege to be called Henry's Mommy, and I praise God that we have just spent our second Mother's Day together!

This photo was taken at the beach in Seaside this weekend. We had a wonderful, warm time together as a family making memories...the best Mother's Day gift I could ask for!

I will start with my favorite time each day with Henry. No matter how tired I may be or how hard the day may have been, our nighttime routine infuses a sense of closeness, security, and love into our relationship...a retaking, at times, of peace to help him lie down and sleep well through the night. It may take us an hour to include everything: bath time, pajamas, brushing teeth, reading books and Bible or devotional, tucking in, then lights out to hold hands for singing and prayer. This is by far some of our most tender moments, when this busy boy relaxes with Mommy's hand and voice. He usually falls asleep during prayer, and though it is dark, I can hear him begin to breathe deeply and slowly let go of my hand as he drifts off. Sometimes he is still awake when I finish and we give our final goodnight wishes, but what joy I (and His Heavenly Father must) feel to know he is at peace enough to rest. The first months with us were full of insecurity, fear, distrust, and more, affecting sleep for all of us. We have come a long way and I am so thankful!

Some of my other Henry-blessings are:
  • his English-speaking attempts and learning...tonight he said he was going to do something in particular because he has a very smart brain; he changes verbs to past tense the best he can, like "hided" instead of "hid; sometimes he will take a word or phrase and use it in a totally different context, like "I have freedom!" when partially taking off his seatbelt, or "Mom, you have a bad case of the kisses and hugs!"; and my favorite is when he repeats a word he has heard but doesn't quite get it right, like "venenom" instead of "venom," or "Octimus" instead of "Optimus" (he really likes Optimus Prime and the RescueBots right now!). Henry has an incredible memory and out of the blue will say, "Mom/Dad, what does _______ mean?"-words he heard in a conversation or on t.v., like banished, prime, and engineer. Henry is a deep thinker and very, very verbal. He challenges and amuses me every day!
  • his vivid imagination in play...Henry can see or hear about anything and immediately get to role playing it. He acts out and verbalizes everything he knows about the particular subject, using props and anybody who will join him. I never know what he'll ask me to role play next: skunks, termites, rescue (of course), Bolt from the movie, cooking competitions, etc. He also knows exactly how it should be played out and gives attention and direction to every detail. Every day is an adventure with Henry!
  • his determination and focus. When Henry sets his mind on something, he is ALL about whatever that is. He doesn't let his physical limitations trouble him too much, he just pretends to do whatever he wants to do or does what he can with all the energy he has. He doesn't give up unless really tired or hurting, and dreams big dreams about what he will do when he grows up. While we talk about the reality of his special needs, he has a lot of passion to do many things, so whatever he can do, he will do with all his heart. I love this about him!
  • his snuggles...need I say more?
  • his tender heart towards Jesus and God's Word. He amazes people with his knowledge of Bible stories, and he loves Jesus' songs.
  • that he loves me. That, in itself, astounds and moves me to tears tonight, after a sweet Mother's Day filled with love and attention from these amazing guys. I am blessed beyond measure, especially to be loved as mother by one who I did not bring into the world.
I hope you have enjoyed a little glimpse into our life with Henry, and just how much he blesses us. Adoption, special needs, post-trauma, cultural and language differences, and more are HARD. But more than that, they provide opportunities for growth, grace, and good in each of our lives. I would not change it, or him, for the world.

I am one blessed Mommy!

UPDATE: Henry's genetic testing has confirmed that he has Metatropic Dysplasia, a rare condition in the spine and joints that worsens over time. However, we have a GREAT GOD who hears and answers prayer, so please continue to lift up his health and well-being to the Father, and stay tuned for updates!

Sunday, April 5, 2015

Springing Into Easter

Happy Easter from the Brown's! Or, more significantly, Happy Resurrection Day! Without the cross and empty tomb of Christ, we as Christians should be pitied greatly. But He IS alive, and because of this, our past is forgiven, our present problems are manageable, and our future is secure. I can't imagine life without this Living Hope and have been mindful of the great grace and mercy He showed me 30 years ago on a hill at children's summer camp when I first placed my faith in Christ for forgiveness of sin. I was not seeking Him, but He was seeking me, and has blessed my life since in ways I still cannot express adequately. "Praise be to the God and Father of our Lord Jesus Christ! In His great mercy He has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil, or fade" (1 Peter 1:3,4a).

We have had some busy last few weeks as spring has arrived with fun activities- soccer, Boy Scouts, church, etc. Camp Korey's skeletal dysplasia family weekend kicked off our spring break, but Henry got ill and we had to leave a day early. It was still fun, though, and we look forward to returning. After the stomach flu hit our middle son for a few days, we were able to head to the beach and enjoy seeing some new areas of the Oregon coast and aquarium. We ended our spring break activities with our first ever hockey game, the Portland Winterhawks. We now have a new team to root for!

We have also had many doctor visits for the family as we get established with our new providers and continue Henry's evaluations. Henry had his urology testing and full spine MRI. Both determined what was already observed, that the compression of his mid-spine causes instability and some lack of control. His PT at Shriner's has worked with him to strengthen and assess his upper leg muscles, but, after seeing doctors on Thursday, it looks like minor surgery is needed to separate muscles at Henry's front hip area on both sides to help him straighten and then hopefully walk a little better longer. This may happen towards the end of summer or early fall. The spinal surgeon is still assessing what would be best for Henry concerning his spinal compression. If a rod is put in place to open up the spinal cord area, growth will be affected. If it is left as is, it could cause permanent damage. There do not seem to be any easy answers for his complex structure. He seems to ache in the back and ribs more these days, and I know that all the structural abnormalities increase pain over time. Please continue to pray for guidance in how to best help Henry for the short and long term in a number of areas.

We had a wonderful Holy Week together as a family. We did a few things at home to keep mindful of the significance of what we were remembering and celebrating this week, and we had some special activities with our church family. Over the last couple months, Henry participated in his first children's church choir; the children had a Palm Sunday parade to "Hosanna" last week, then sang two special songs this morning for everyone. It was a blessing to see them worship King Jesus, and a great experience in general to grow in music and confidence. We also had a churchwide potluck breakfast before church, then Easter egg hunt after church. Our family finished all that off with delicious BBQ here in Portland. Then, I had a much needed nap!

We are still in search of a home to buy here in the area, so please lift up this process of trusting and seeking God's best for our family's needs. We are planning to take a family vacation to Florida in June as my husband marries off a niece...needless to say, we are all REALLY excited about warm beach time!!! And we're looking forward to time with his side of the family. In fact, most of them have yet to meet Henry!

And so begins a new week...have a great one, you all! Thanks so much for your love, prayers, and support.

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


Sunday, January 4, 2015

A New Year in a New Place

Happy New Year everyone!!!

I hope you had a wonderful Christmas and New Year. Ours was really nice staying close to home and just being together. We enjoyed some beautiful Portland lights at the International Raceway and Grotto, then a special Christmas Eve service at church. The kids highly anticipated Christmas morning and were bouncing on our bed at 7 a.m., the earliest we told them they could. It was a special day with Santa's surprises, opening family gifts, and later enjoying a delicious Christmas dinner. Henry's favorite gifts were his Paw Patrol items (bedding, game, lookout tower, stuffed Chase police dog, DVDs), remote control police car, police costume, Hungry Hippos, Henry-sized chair, and some Veggietale items. He was excited to give presents to his family. With some of his Christmas money, he also wanted to give to the Lord, so he bought three ducks for a family in poverty around the world through World Vision. And he especially loved playing with his Christmas nativity set. What a blessing to see Henry's heart adore the baby King and then want to give back to Him. Enjoy some Christmas photos!

We were under the weather around here after Christmas, but still had a nice New Year's together with some new friends from Taiwan who are exchange students at a local university. Henry and I took them to Multnomah Falls, which was just gorgeous with all the ice around it. We have had a nice break from school but are ready to get back to a schedule. Henry starts preschool back tomorrow and is looking forward to it.

Some issues have risen with the photos in my blog, so I have been working on it but you will see that all but recent posts are missing them. Little by little I will get it back to normal, but in the meantime, I hope you like the bamboo forest/green background! Henry really likes it:).

The Lord richly bless your 2015!