Tuesday, August 30, 2016

Henry's Super Summer

Hi Everyone!

Sorry I have not updated the blog in so long! Henry's second decompression surgery was in April and it went really well. Henry's back had healed nicely from the one in February and actually looked straighter than originally thought, so the surgeon decompressed the lower spine but decided it was not necessary to put in a straightening rod from lower to upper back. It also went a little quicker than previously and he spent less time recovering in the hospital, as well as, at home. I had been dreading a repeat of February's surgery and recovery, so this was a real praise.
Even though Henry missed a month of school for each surgery, he did really well in Kindergarten. However, he also hated going to school. While he made some friends and had really great teachers and assistants, he just never got comfortable with the six hour days of noise, large crowds, and depending on other people to meet his needs in a timely way. Henry does not like being the center of attention and the children were naturally drawn to him, getting up in his personal space a lot. He would get embarrassed or panic when he had emergency toileting needs, especially after a couple of accidents, and seems to have heightened senses that cause discomfort in certain environments. We have also learned that our sweet boy is very Type A in personality, liking things predictable and controllable as much as possible and for a number of reasons. He would actually get annoyed when others students answered the teacher's questions without raising their hands:). So, while he loves to learn, the public school environment was too stressful and we decided to try homeschooling this year for 1st grade. We will be using the K12 Oregon Virtual Academy with his own online teachers while I will be his Learning Coach. Both Henry and I are getting excited about it. He starts on September 6th so I will keep you updated on how it is going. Three-hour school days with the personal attention and pace should be a nice change for him. And we will be looking for extracurricular activities for him to be involved in as well.

We have had the best summer since Henry came home. His first summer was spent in halo and vest, recovering from major c-spine fusion surgery, and last summer was great but we had moved into our new home in July and were very focused on settling in. No such big events this summer- just lots of fun! We kicked it off with a family reunion vacation to Oklahoma with my family. Four out of five of us have summer birthdays, we celebrated our 16th wedding anniversary, our whole family participated in pre-teen missions camp and Vacation Bible School, we went camping at gorgeous Cove Palisades State Park (Henry's first experience in a tent), and much more. So many blessings!




 













Henry turned seven years old on August 20th! We had a great time at Dizzy Castle, one of his favorite indoor play areas because we can go in with him and help him do everything. It was an intimate, knight-themed party with a very cool and delicious castle cake. He is growing up so fast and such a blessing to our family. We look forward to a great school year, and appreciate your prayers as we venture into the new world of homeschooling together. It will be a different routine for us and I must continue to seek a good balance with everything. Thank you and I hope you all have a great year as well! Blessings!




Monday, February 15, 2016

Decompression Surgery - Part 1


Henry has had the first stage of decompression surgery on his spine! He was supposed to have had his upper and lower spine completed on February 9th, but the upper back took six hours in the operating room alone. He is settled in at home now after five days in the hospital. Everything went really well; he has just struggled with pain, nausea from medicines, fatigue, swelling, etc. He looks and feels better every day, our church has been taking good care of us with dinners, and we are all glad to be back home.


As Henry's swelling goes down and he becomes able to move around and become more active, he must wear his new Oregon Ducks' brace. It is not his preference to wear it, of course, but we are thankful that it can come off for bathing and sleeping. A nice change from his halo and vest from the c-spine surgery in June '14! Henry will be back in school in another week or so, starting out with shorter days until able to do full days. He will have a tutor at home in the meantime.

It has also been a huge blessing to be living in Portland, much closer to Shriner's so that we can more easily go back and forth while still taking care of our other sons. Shriner's has been amazing and we are so thankful for the fantastic surgeon's and staff caring for him there.

So, what is next? The lower spine! Decompression in his lower back may be scheduled in even just a couple of months. I cannot say we are excited to do that again and so soon, but it needs to be done and we will make the best of it. We so appreciate everyone's prayers and support!








Wednesday, January 6, 2016

Two Years and Halfway There

Our family has reached some significant milestones with Henry recently, and we have some significant dates coming up, so it is time for another blog!


Two years ago on December 9th, we held Henry in our arms after a long adoption process for the first time. On the 10th, we signed China's papers to be legally recognized as his parents. Our emotions were all over the place and frankly, they still are. We have come through so much together already and have so much more to come. Adoption remains a messy, wonderful, life-changing journey for all of us. I continue to work on Henry's two-year post-adoption report and it is fun to think back on how much he has grown and adjusted these last two years...all by God's grace!

Coming home right before Christmas was a magical and interesting time. Henry doesn't remember much about that first Christmas with us, with so many changes occurring in his life, but it was very special and we did just celebrate our third Christmas together! We celebrated in our new Portland home with my dad and his wife joining us from Oklahoma. We spent a few days before Christmas on a road trip to the beautiful redwood forests of northern California and traveling up the Oregon coast. We had a nice Christmas Eve service at church, then Christmas morning presents and a delicious Christmas dinner.
Our family brought in the New Year with activities around Portland. The previous few months had been quite wearisome for us with extra responsibilities and painful illness. Randy had the shingles and I had an excruciating shoulder injury (both much alleviated now), so needless to say, we really enjoyed some quiet and rest over the break. The boys were supposed to go back to school on Monday but snow and freezing rain postponed the return until tomorrow. I think we are all ready:). But, I do request your prayers over Henry's transition back to the regular routine of school.

I have done a little math just for fun...Henry has now been with us for 758 days, only 28 days shy of being home half of the time he was an orphan in China. When he has been with us 1,572 days on March 29, 2018, he will have been with us as long as he was not, so we will have to celebrate big!

We do have some big news concerning Henry's medical condition. He continues to have compression of his spinal cord in two areas of his back (upper and lower), so is now scheduled to have decompression surgery on Tuesday, February 9th, at Shriner's with the same excellent spinal surgeon. It is another significant and risky procedure requiring a brace and lengthy recovery period, but we are prayerful that all will go well. We made it through his c-spine fusion by God's grace and know He will get us through the next one.

We do appreciate your prayers as preparations are made in a number of areas, and I will keep you posted as we know more in the days ahead. For now, our happy boy is full of life and the love of learning, especially when it comes to superheroes and Wild Kratt animal adventures. He has great plans to be a researcher, scientist, or teacher most days, and just loves to be home with his family. I so enjoy watching him interact and work hard to keep up with his older brothers. It is challenging to put in words how much growth we have seen in him and ourselves in our adjustment and relationships with one another. It is also equally as difficult to express how thankful we are to have him in our lives and to have the loving support of so many of you. Thank you for your prayers and interest in our adoption journey. The Lord bless each of you richly in Christ this year ahead!

















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 sometimes...like 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!

Monday, December 22, 2014

God IS With Us!

Today we celebrate one year that Henry has been on American soil with his forever family. I will never forget the anticipation in the airport after landing for the older brothers to arrive on their plane and reunite with us, meeting Henry for the first time. It was an emotional time as our family was truly made complete. Little did Henry know what life would be like with us, nor we with him, but we truly are blessed and thankful for all that God has done.

As we remember our Lord and Savior Jesus Christ as a family this Christmas, we are very mindful of how God Himself came down in the form of a tiny baby, was entrusted to earthly parents to help fulfill a huge divine plan, and the depth of love and grace that bound them all together. Henry has a good bit in common with Jesus in that they both left the homes they knew to become part of a new family to experience many changes and hardships, all with God's best in mind to accomplish a beautiful plan. Both Jesus and Henry, and indeed, all of us, shine bright in a dark world as we accept and fulfill God's will for our lives.

As we muddle along some days still to adjust to life together, we are growing in so many ways...forgiveness, mercy, understanding, surrender, humility, unconditional love, patience, and on and on. Jesus was God in all His fullness, so this Christmas, we are incredibly thankful that He came into our darkness to shine His light, into our brokenness to make us whole, and into our dying to give us life. Without Him we can do nothing, but with Him, all things are possible. Herein lies our hope on the good days, but especially the harder ones when we wonder why this process has to be so messy. And while we know God has great things in store for our Henry and family, we are learning to embrace the ordinary of each day as a valuable part of His plan, to see God in the flesh as He lives and moves within and through us to do His will.

"The Word became flesh and took up residence among us. We observed His glory, the glory as the One and Only Son from the Father, full of grace and truth" John 1:14 (NIV).

"I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me" Galatians 2:20 (ESV).

Merry Christmas for God IS with us!!!



Saturday, December 13, 2014

One Year!

We just had Henry's one-year adoption anniversary on the 10th!!! It is hard to believe it's been that long, but in some ways, it seems longer than that. In celebration, our family enjoyed some delicious and authentic Chinese food family-style at a local restaurant, then had our own little party at home with cake and ice cream. Henry was extra excited that his cake was a Paw Patrol cake with Marshall the fire dog on it. We have been so blessed with this small but huge addition to our family. Henry has grown in leaps and bounds over the year, and through all the ups and downs of adjustment and attachment for all of us, we have grown so much personally and with each other. The physical formation of a family may happen quickly, but the actual making of a family in heart, soul, and mind can take much longer. We are truly not just the Brown's in name but in every other way, so we truly celebrate all that God has done!



We have enjoyed some special Christmas activities already: our yearly tradition of picking out our Christmas tree at a local farm and Henry singing in a huge Christmas program last night with his Portland preschool. He was so handsome and did wonderfully. We are attending the local Little People of America chapter's Christmas party this evening and excited to meet other families similar to ours. The network of support and opportunities in this big city is much larger in a number of ways...special needs, adoption, dwarfism, Chinese culture, etc. We have become a multi-cultural family with a number of needs and challenges, as well as blessings, so the support and sense of identification is really important!


Please continue to pray for us as we adjust to life together in our new city and ministry. All the boys are doing great at their new schools and making friends. Our new church is able to offer age-appropriate classes for each of us, and I am able to focus on caring for my family without all the extra responsibilities I had before. We do feel at home but still have some big areas to work out, like insurance, doctors, registrations, etc. However, so much has been taken care of already and we are so thankful to have a cozy home to stay warm in. Please pray for Henry's continued health and needs. He has a surgery follow-up visit on the 18th at Shriner's. Please also pray for my own health as I embark on a year of corrective chiropractic care to help reverse some structural problems that have become quite painful and increased my stress level, especially with all the carrying, lifting, and lowering I do with Henry.

We love and appreciate you all. Thanks so much for keeping up with Henry and our family. Happy one year to us all!!!