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!!!

Saturday, November 22, 2014

Henry's Happy Thanksgiving

Henry wants to wish everyone a Happy Thanksgiving! He is getting to experience the holiday in America with his family for the first time. He also will get to experience the fullness of the Christmas season for the first time here. December 9th is the day we received Henry in China last year, and then December 21st is when we landed on U.S. soil. It was a bit of a whirlwind for him to say the least. We are looking forward to many wonderful opportunities and memories to celebrate the reason for the season here in Oregon...yes, we have moved and are now in Portland!

Our moving day was Tuesday, November 11th, Veteran's Day. It all went smoothly and we are feeling quite at home in our new house. Henry just finished his first full week of preschool and he enjoyed it very much. He was very sad to leave his teachers and friends at his previous preschool, but once here, embraced the adventure as he is so good at doing. We are very proud of him and he has already made friends! All of our family is doing well, though it has been harder for the older boys, so we thank you very much for prayers.

In lieu of Thanksgiving, our family wants to give thanks for all the amazing friends and family near and far who have given us such love, encouragement, and support - especially prayer- on our adoption journey. We give thanks to our Lord Jesus for bringing Henry into our family forever, and for Henry who fills each and every day with such love, light, and challenges that keep us growing and our hearts so full. We are beyond blessed and can't wait to celebrate one year with him!!!

Happy Thanksgiving everyone!

Saturday, October 25, 2014

Happy Fall!

Enjoy these photos from Henry's first pumpkin patch experience this week!

Tuesday, October 14, 2014


Yes, our family is moving! God is closing the chapter of our lives in Washington state and moving us to Portland, Oregon. My husband is taking on a new pastorate and we plan on being settled there by mid-November if things move along. What a blessing to live so close to the Shriner's Henry is already a patient at! We are experiencing a whole range of emotions though and I am sure this is quite a strange time for Henry as he thinks about leaving the only home with his family he's known. He's pretty good at taking on new challenges and adventures, but he has concerns and questions like the rest of us. Please do pray for him and all of us as we prepare for the move and face a number of adjustments in our new location. Please see below for specific prayer requests! 
That being said, Henry is doing great! We've moved into a fall routine with not too many big events, which has been nice since we're getting the house ready to sell. He is loving preschool, playing with brothers, music, football, helping me cook, doing whatever each day holds. And while he still likes firefighting, Henry's new favorite is being a policeman. I've gotten more tickets than I can count...others go to jail so at least he's keeping me around :). His first pumpkin patch outing is coming up too! And he had an excellent follow-up doctor's visit a couple weeks ago in which the doctor said he's healing nicely and doesn't need to be seen for another three months. Perhaps three months following that they may look at the mid-spine compression. But, surgery there would affect his spinal growth pattern, so I think they are going to wait as long as possible before doing anything there.

Henry continues to get stronger and move around almost like he did pre-halo, but not being able to elongate his neck forward and backward much does affect his crawling, vision, and alignment. He just adjusts though and is also doing better and better at driving his power wheelchair. He drives it to and from preschool on nice days, and my stress level has gone way down with his improvement. Yay! At the last doctor's visit he seemed to have gained about a pound. I think he's getting a little taller too, but the growth is definitely slow for him. I think we may have a slightly loose tooth!

We have made 10 months with Henry and what an amazing journey to God's heart it has been. I know the Lord keeps working on my heart to help me grow in being the Mommy Henry truly needs. He sure does seem to love his family and for that, I could not be more thankful. We all love this little guy SO MUCH.  Thank you for checking in on us and for prayers, especially in these days of change ahead. God has even more wonderful things in store, but a move can sure bring a lot of stress and we sure are going to miss our loved ones here. The good news is that we're not moving too far away! We are so blessed with the love of so many, near and far.

Prayer Requests as We Move
  1. Timely sale of our current home and the securing of adequate, affordable housing in Portland. 
  2. Schooling choices and transition for all of our children; accommodation for Henry's special needs.
  3. A sense of security for Henry and brothers as we adjust to the much larger, busy city surrounded by multitudes of people we do not know. 
  4. Quick settling into our church and community, the making of good friends, and a feeling of "home."
  5. God to provide for all of our needs, grow our faith and closeness to Him, and bless our family that we may shine brightly for Him as we "go"!

Monday, September 8, 2014

Little Big Man on Campus

The "Little Big Man on Campus" had a great first day of preschool!

Henry will be attending the 2 1/2 hour session of preschool for 4-5 year olds for four days a week. After a few months of preschool last spring and a couple hours playing in his new room last week, he was quite comfortable and ready. I stayed today to help if needed, but he is going to do great and I have a feeling he'll let me leave tomorrow just fine. As for moving around, he will crawl and play on the floor, walk with his walker from area to area, use his power chair outside the classroom, and be assisted otherwise as needed. His teachers are great and Henry already gets to bring a show-and-tell in the mystery box back to class tomorrow. Here's to a great year!

Friday, August 22, 2014

The Birthday Boy-Firefighter

We've had a really fun week celebrating Henry's 5th birthday...his first with his forever family. On Sunday, dear friends gathered at our home for his firefighter-themed birthday party and he was one happy boy at opening all his gifts. He then turned five on Wednesday and opened his last few cards and gifts...a Thomas train table and authentic fireman's uniform complete with suspenders, jacket, and helmet. He has really enjoyed all of his gifts and cards, so thank you to those who blessed our sweet Henry this week!

On Wednesday, we also left for a two-day excursion to Mt. Rainier Nat'l Park where Henry got to see the majestic mountain up close, hike, stay in a cute little inn, and then ride the Mt. Rainier steam train. It was a really great time! We are glad to be home though and will have lots more fun tomorrow at our church's block party. Looking forward to Henry riding his first horse! And Henry starts preschool for 4 & 5 years olds in our local elementary school on Sept. 8. He has been moved to the afternoon class so we are trusting God's plan for him in this.

We love Henry so much and he brings so much joy to our home and hearts each day. As much as he is blessed to have a family and be well cared for, we are blessed all the more to be his family and get to take care of him. He has been with us eight months now and though some days we are still obviously adjusting and needing extra grace, most days have settled into our new normal quite well. Please continue to pray for all of our adjustment, not only as an adoptive family but as a family with special needs. And please pray for Henry's body to continually heal and strengthen after the surgery and halo, and that we would know how to make him as comfortable as possible as some days the joint and back pain seem extra high. It is hard to see and know that pain will be a part of his life, but more than anything, we want him to have the best quality of life possible in its midst. He has already done amazingly well recovering from the c-spine surgery and halo. We know you have been praying for him so, thank you! 

Saturday, August 16, 2014


Henry's halo is off! He's doing great and as I write, in the kiddie pool outside enjoying every minute of his freedom. For time's sake to let you know how things went at Shriner's, I am copying my Facebook posts here. Enjoy!

Monday, Aug. 11
Henry, Joshua, and I head to Portland this afternoon. Henry checks in tomorrow, 6am at Shriner's for halo removal. Then he has a few days of PT appointments to practice driving the power wheelchair he will bring home on Thursday eve. I'd appreciate prayers for our trip...thanks!
And here's a cute video of Henry's "happy" video he made for New Day Foster Home's video being put together of their adopted kiddos. Enjoy!

Tuesday, Aug. 12
He just went back and they've started the removal. Just a little nervous but mainly excited. Always great fun to see him super relaxed and silly after the med they give him:) ...
All is well after lots of cries when coming out of his sleep. Turns out he was super hungry and is fed, so much better:). I LOVE holding him fully close now...he'll be off and crawling away soon enough.
Ready to get it off!


Napping wonderful it must be to lie down without the contraption. We come back in six weeks for a checkup. He just has to wear the foam neckbrace during the day until then. Doc says he looks nicely healed up already. Now we just need to restrengthen those muscles, which shouldn't take long as much as he likes to move around.
Henry does his first power wheelchair practice drive at 4 p.m. Feeling so good today, PTL!!!

Wednesday, Aug. 13
You all overwhelm us with your 'likes', love, concern, and celebration with and for our family. Thank you! It is especially obvious that Henry has a fan club all over the world:). I think I gave him hugs enough for everyone yesterday! I can't tell you how good it is to hold him close again. 
Henry did fabulous driving his power wheelchair yesterday, like a pro. He will go at it two more times today and then tomorrow, with chair adjustments and a custom order to be made this morning. Not sure how long it will take for insurance to approve and the new chair to be delivered, but one little boy is going to love his very own GREEN ride when it comes!!!

Thursday, Aug. 14
Just a little bit of anxiety at turning Henry loose at driving a 200 lb vehicle at the age of four (almost five). He's so bright but there's a lot to think about, especially concerning the people and things around him which he has not had to think about before, especially behind him which he cannot even see. Plus, he is easily distracted and not good at listening...yes, he's doing great but perhaps we could use some prayers, the both of us! 
Also pray for wisdom in his physical activity so soon after the halo is off. Many of his muscles have been inactive for 9 weeks and he had some sharp back pain yesterday, along with neck discomfort. He's wanting to get back to where he was super fast and the body is not cooperating. Thx! ...

I can definitely feel the extra 200 pounds in the back of the van when driving.

Last Night
I walked with Henry down the street as he drove his chair on the sidewalk and did a great job. I was greatly encouraged and think time will help him a lot. So much to take in at Shriner's in a short time, but after rest and less distraction, we are both doing better:). Thanks for prayers!

Thursday, August 7, 2014

Goodbye, Halo!

We have some wonderful news to just five days, on August 12th, Henry's halo and vest will be removed! Check in is at 6 a.m. We got a great x-ray report on July 30 that his c-spine fusion is healing very well. He will wear a removable neck brace for a few weeks following, but then he should be free! Until the next surgery, of course, but we don't have any date on that yet; he will have more spine surgery behind his chest as there is compression of the spinal cord. But what a blessing to have some summer fun without the halo restraint!

And more summer fun we will have...Henry's 5th birthday is coming up on August 20. We are going to have a fire truck birthday party on the 17th, then travel to Mt. Rainier on the 20th to stay the night in a cute cabin and then ride the Mt. Rainier steam train the next day. We are really looking forward to this outing. Henry will also go to the county fair for the first time this weekend. That should be fun, too!

We did get to ride the Chehalis-Centralia steam train last weekend, and then see some neat things at the Veteran's Memorial Museum next door. Henry's favorite was getting inside a real helicopter and pretending to drive. While in Portland, Henry and I visited the beautiful rose garden and Japanese garden. In the last few weeks, Henry also attended his first wedding and National Night Out community gathering in which he got to meet search-and-rescue dogs, see a fire hose connected to a fire hydrant, and SPRAY his first fire hose! Henry was one happy boy:).

Enjoy the photos and keep Henry in your prayers as the halo comes off. He will have some punctures to heal but I am sure they won't slow him down much. Thank you so much!

Monday, July 21, 2014

Six Weeks Down

An update on Henry is long overdue...we have been pretty busy this summer. In the beginning, we had quite a learning curve on life with this halo, but the last few weeks have been pretty fun and the halo has become a normal part of everyday life. Henry is even sitting on the floor in it and scooting around on his bottom with good balance. We are going on six weeks now! In fact, we've decorated it with Seahawk colors and stickers. Just about everywhere we go, Henry catches people's eyes and makes new friends. This means new friends for us, as well! It also means perks sometimes, like when an anonymous person bought he and his brothers ice cream at a restaurant, when we get to board the airplane first and see the cockpit, or when he is given a real major league baseball and even Seahawk football game tickets for the fall. Yes, life is never boring with Henry in a number of ways! The funny thing is, I don't think he even really knows why he gets so much attention and adoration. He just keeps being himself, always looking around and ahead to the next thing.

Henry had his 2-week checkup at Shriner's and his incisions were found to be healing quite nicely. The bandages were removed so cleaning him and washing his hair has been way easier. We have an appointment on July 30, only nine days away, to have his c-spine fusion x-ray. If healing well, the halo could be coming off that following week or two. If not, well, we won't think that way! Henry's 5th birthday is coming up on August 20th, so how wonderful it would be to have it off by then. I am still thinking about what we are going to do for his first birthday with us.

Following that appointment, we had a fun afternoon at the OMSI in Portland. He really loved the planetarium experience and space has become one of his new interests. On Friday night, we went to see his brother at kids' camp not too far away where he got to roast a marshmallow and eat a s'more for the first time from his own personal campfire (rain cancelled the regular bonfire), and since then, Henry has been singing some of the funny songs he heard, like "What's That You Say?" and "Button Factory." He is quite entertaining!

We had a fun trip out to the Quinault Rain Forest and got to see the world's largest Spruce tree. We also visited another local fire station where Henry got to see a REAL fireman's pole. He was full of questions and had the best time with the tour, then he got his own first fireworks! The Fourth of July was a lot of fun as we spent most of the day near the beach with friends for a picnic and play. He was nervous watching the small fireworks we did at home but soon enjoyed them, especially the large firework show we saw at the river at night.

Our best time yet was our trip to Oklahoma a couple weeks ago that we just returned from a few days ago. First, we spent an afternoon near the airport at a family fun center to celebrate Henry's brothers turning 11 and 13. Yes, we now have a teenager in the house! The following morning, we flew out for Tulsa, Oklahoma and spent nine memorable days with family there. It was the first time for my side of the family to meet Henry, and when lots of aunts, uncles, and cousins descended on the lake for a reunion, he was a bit overwhelmed. But, in no time, he was himself again, talking and playing as usual. The time there also proved to provide a lot of firsts for Henry...boating (he got to help drive), fishing (he caught three crappie), riding (and driving) a golf cart, riding in a convertible (he pretended he was in a parade the whole time), eating on a floating restaurant, playing mini-golf, and experiencing the Tulsa Zoo and Oklahoma Aquarium. It was a special time for all with many memories made. We had to fly three planes home instead of two because of delays, which Henry didn't mind at all, but it put us home at 3:30 in the morning. Needless to say, we are still recuperating.

We appreciate your prayers and for you keeping up with our journey. I will say that our weather here is between the 50s and 70s right now, so it is pretty bearable for Henry in his vest. Surely some more hot days are coming so we are definitely thankful for this cooler weather. I will post an update after Henry's x-ray appt. on the 30th to let you know what we find out concerning removal of the halo. We have some fun times ahead this summer, and I know one little boy is extremely excited about turning five! Enjoy a few of our trip photos...

Saturday, June 21, 2014

Halo in the Home

Things have settled down into a new normal now after being home a week from the hospital. Besides some few post-surgery areas that have needed tending to, the halo and vest have proved to be both a challenge and easier than expected. Nights are still our most challenging times, which makes the days a little harder, but I can say that grace has abounded so that we are all doing quite well. Please read to the end so you don't miss an important medical update!

How we both felt on the way home.
We had a sweet welcome home by brothers and Dad on Saturday (6/14) and have really appreciated the wheelchair for getting Henry around the house. The halo is definitely awkward, so I have to be careful not to get hit by it when moving or hugging him. Henry's pain has decreased tremendously and he made it through last night without any medicine whatsoever for the first time. Last night was also big progress as he slept in his own bed in his own room. The previous weeknights, he had been sleeping in his bed at the foot of our bed so that we could quickly tend to him and not keep waking up his brother. But, we started to notice that perhaps Henry was taking advantage of our nearness with unnecessary noises for attention and keeping us up way too much, so we decided to try the move. It went so much better for all of us. Henry cannot turn himself so needs moving periodically during the night when he gets uncomfortable, and occasionally loses a sheet or blanket and needs those pulled back up. I can't imagine not being able to move or reach things. He is adjusting and accepting this halo and vest more each day, and though he can go overboard or be demanding, we are glad he has no problem telling us what he's feeling or needing. How much harder it would be if more guessing was involved.

There are little adjustments that we have had to make for Henry's comfort and our ease of caring for him, like keeping the rooms cooled as much as possible, adjusting the heights of things, and being creative during bath time. A portable A/C was given to us and we need someone to come put it in for us, but praise the Lord, it has been pretty cool outside and we haven't needed it yet. Henry was frustrated the first few days as he realized how little he could do that he did before, but he is now understanding better that that will all return when the halo and vest come off. We are finding new and definitely more interactive things for him to do, and we are watching the countdown calendar. Henry is seeing how quickly the weeks go by and is already talking about what he wants to do when the equipment comes off. However, he does think he looks kind of cool, like an astronaut or firefighter with their gear on:). 

We have a fun list of "To Do's" and have already gotten out a couple times this last week. We had a special celebrative dinner on Monday for Father's Day, my 40th birthday, Henry being home, and for the last day of school. We do get a lot of stares when we're out but we know the halo and vest are as foreign to most people as they were to us, so we don't mind. We talk about how interesting surgery and this equipment must be to people and that we can help them learn more about them. Henry kind of tires easily but is definitely increasing in stamina, and he is definitely back to his normal chatty, curious self. When he is not talking away, he is usually pretty tired so we know it's time to rest. We also have a wonderful family reunion trip planned for July, and Henry is especially excited about riding an airplane again and meeting a lot of his family. Everyone is sure excited to meet him! 

During our hospital stay, the doctor mentioned that Henry diagnosis is now Metatropic Dysplasia instead of SED. This is a very rare form of dwarfism with specific joint and spine challenges that can affect breathing, the brain, and many areas along the way. Less than 100 known cases currently exist but the information available is helpful. An easy-to-read description can be found HERE.

We have a follow-up visit at Shriner's on Thursday, 6/26, to check the incisions and change bandages. Around six weeks, we will return for an x-ray to check how the fusion is healing and then know better when the halo and vest will be removed. Please continue to pray for our adjustment and Henry's care at home during this time, especially for his healing, and for the doctor's wisdom going forward. No doubt we have many surgeries and challenges ahead, but continue to trust the Lord for day-to-day grace. Please also pray for our family as we seek the Lord concerning the future, any changes we need to make to better care for the changing needs of our family. From the small details to the large picture, everything is different now and requires evaluation and adjustment. Henry is such a joy in the midst of it all and I cannot tell you how much our lives have changed for the better because of him. We are ALL blessed! Thank you all for journeying with us! Blessings.

Friday, June 13, 2014

The Great Physician

I've labeled this post "The Great Physician," because God has truly been holding and healing our precious son. The last two days have seen great progress already and it looks like we are headed home tomorrow. We can't thank everyone enough for lifting us up in prayer. The outpouring of love and support has been overwhelming. So, thank you with all our hearts!

A quick update before I sleep while Henry sleeps...Henry is now off of all IV fluid and meds, has passed two stools, has kept some food and oral meds down, has regained his color and some of his personality, and rarely complains of pain. We have had some fun in the play rooms and he is really benefiting from his little wheelchair that we get to take home. Though he has moments of panic or fear or annoyance at the halo and vest, he is growing used to it more each day, as am I. It is quite bulky and awkward, heavy but not too much, and as I learn to lift, hold, and transfer him in it, I have to be careful for both of us. I may have to see the chiropractor a little more frequently:).

While Henry has made great and quick gains already, he also continues to struggle with nausea causing vomit, swelling from his waist down, and pain here and there. They were going to release us this evening but his throwing up was especially cause for staying another night. Hopefully medicine will get him settled and home tomorrow, but whatever is best for him is what we certainly want.

It has been an amazing thing to experience this week- God's sufficient grace through it all. And though it has been really hard for me to watch Henry go through this, I can't help but think of all he has gone through in his short life so far: abandonment the day of his birth, three years of life in a Chinese gov't orphanage, transfer and 1+ year in a private (wonderful) foster home in another China city, all the challenges and treatments for his special needs, adoption by strangers, moving to a whole new country, the process of adjustment to countless changes and attachment to a family, and now major surgery which he knew about but didn't really know what it would mean. All before his fifth birthday. This child is dearly loved and truly being held in the hands of His Creator, the Great Physician.  He represents countless children around the world who endure so much yet are not forgotten or forsaken by the One who calls them by name to Himself.

Someone once said that it is not only important to love much but to love well. I love this little boy more than I can say, and my heart has felt ripped out at least a few times this week, but what I am really coming to grasp is that I need to learn better how to love him well.  No doubt this will be a lifetime endeavor and the needs are great, but I find a great source of strength and hope in knowing our Father in heaven has already shown the way and will provide all that is needed. And His love is absolutely enough.

We are not only going to make it, we are going to make the best of it. And surely our great God will shine through our cracks as He makes beauty out of ashes, turning sorrow into joy. Our verse this week? "The joy of the Lord is your strength" Nehemiah 8:10. And, yes, it is available to all of us! Blessings!

Wednesday, June 11, 2014

On the Mend

Day two has already seen great improvement for Henry. The night was rough for he and Daddy as the nurse came in every two hours which woke them up. At one point, Henry cried for me, and then at 4 a.m., was wide awake so they read and talked, etc. After some more sleep, the doctors made rounds and then Henry threw up his apple juice. He has had a bit of nausea from the meds but actually kept down a bit of popsicle and four saltine crackers a little while ago. His catheter has been removed and he is now doing well in diapers.  He is much better concerning pain and the reality of the halo; is alert, talking and playing more; and wants to take another wagon ride today. He has a reputation of being so cute and polite...even in post-surgery, he's a charmer:).

I crashed in the guestroom last night and woke up around 6 a.m. feeling rested...praise the Lord! After breakfast, I stayed with Henry and Randy went to the guestroom to rest. It is lunchtime now and I am having a last break before he leaves this afternoon. Henry is being so well monitored and cared for by all here. We are really thankful for such a great place and staff.

I am really thankful for the strength and grace God provides, and for His presence with us in all the highs and lows. He has beautiful purpose and meaning in it all, and it's beyond precious to see Henry begin to really see and experience these things. That makes it all worth it. Blessings!

Tuesday, June 10, 2014

Henry's First Surgery - Update

Henry's surgery has begun! We had a nice evening last night and a decent night's rest. I got him up and washed early this morning, then registered at 5:30. He was in good spirits as we played, sang, and prayed together in his room waiting for anesthesia. Once they gave him a little medicine to relax him and he got a little loopy, they took him on to the surgery area. Randy and I have eaten breakfast here in the cafeteria with a pastor friend who came to support us this morning. I will post updates here on this particular blog entry as we get them, about every hour or so. Henry will be in the operating room for 4+ hours. Thanks for prayers!

UPDATE: The surgery went as smoothly as it could have gone and after five hours, we were able to go in to see Henry. He was waking, breathing, and responding as needed so was not taken to ICU at OHSU for the night. This was a really good sign. However, he also woke up in a panic and in pain so I laid with him in recovery as he cried and cried until the pain med was sufficient. It was heart wrenching to say the least. Once all was stabilized, he and I were wheeled to his inpatient room where he has slept most of the day. He has started watching a couple videos but soon fell asleep. He also had a little wagon ride around the unit while his bedsheets were changed, but slept most of that as well. He has cried a few more times, complaining about the vest being too tight and hot, and about certain areas itching or hurting, but otherwise, has done amazingly well considering all he has gone through today.

The Shriner's staff has been wonderful, and the quiet, personal attention has been so helpful. We are very thankful for God's provision and for His strength today. Thanks again for prayers! We expect tomorrow to be a better day.

Friday, June 6, 2014

Surgery A' Comin'

Things are about to get really busy in preparation for surgery so this will be my last update before the big day. Henry and I head to Shriner's on Monday, with Randy to join us later that day and getting the brothers settled after school. Check-in time is Tuesday morning at 5:30 a.m. following Henry's bath with a special soap. We had a very good pre-op visit at Shriner's on Wednesday with one of the surgeons, a nurse, anesthesiologist, and physical therapist. I got some questions answered and they got the information they needed to provide the best care for Henry. More details to follow.

But first, we had a good six-month post adoption visit with our home study social worker on Tuesday. We were encouraged to hear that it being only six months, Henry is doing amazing in so many ways and receiving what he needs to thrive. Even with our challenging times and days, we are well on the road to being an attached family. We have adjustments to make to further his sense of stability and security, as well as, to address some of his behaviors. I have been reading "The Connected Child" by Purvis, Cross, & Sunshine, as well as, "The Spiritual Art of Raising Children with Disabilities" by Kathleen Bolduc. These are proving to be just what we need to help both him and us through the challenges of the adoption and special needs journeys. God is good!

Yesterday was really special as I got to attend Henry's last day of preschool with him and see him perform in their program. He sure loves to sing and participated so well in everything. We are so thankful for the love and care he has received in the classroom. Henry will be going to the 4-5 year old preschool class for four days a week next year.

 The highlight of our trip to Shriner's on Wednesday was Henry's first test drive on a motorized scooter. He was so excited and already asking how fast it would go. He did really well maneuvering the joystick, with only a few crashes:). I wasn't sure what the scooter would look like, but it is not small at all as you can see by the photos. The current plan is to borrow one to begin school with in the fall, after Henry's halo and vest are removed and he has practiced a bit more. At that time, a customized scooter will be ordered for him and take time to come in, but eventually he will have his very own. The goals are to encourage Henry's independence, increase mobility, move him from looking like a toddler in a stroller to a five-year old with much more capability, and ultimately, to increase his confidence and opportunities. He will still be encouraged to walk and move his body as much as he is able, but this will be a great asset to his life, especially when out and about. There are a number of other details to work out, however, especially in transporting the scooter. We will have to obtain a foldable ramp and secure it for the van. This is a few months away so right now, we are focused on getting through our family's first big surgery!

Some of the things we know about the surgery are that while everything will occur at Shriner's, there is the possibility that he will spend at least one night following surgery at Doernbecher Children's Hospital's ICU for close monitoring of his neurological responses. He will most likely be released to come home Friday or Saturday. Randy will be with us for a couple days, then return to the boys and work. I will be on my own after that, so I especially ask your prayers for my stamina. I will have my own bed in Henry's room but probably have a lot of sleep interruptions as people come in and out to care for Henry. No doubt we will be exhausted when we return home, but until then, we will make the best of it and God will see us through. I just have no idea what it looks like!

Other than that, what I know is that Henry will have bone extracted from his lower back to be used in the fusion at his neck. They are not fusing to the skull but this is still a high-risk procedure. It could take or not take, he could lose a significant amount of blood and need transfusion, he could have intubation difficulties or negative reactions to medications, and/or there could be damage to pressure points. I don't understand it all but I do have total trust in the Lord and confidence in this surgery team. They do know what they are doing and have experience with his condition and the surgeries it requires. 

At some point, Randy and I will receive training on how to care for Henry in his halo and vest upon returning home. It might sound silly, but one of the things I think about is how his beautiful, smooth baby skin is now going to have incisions and then scars. The halo pinpoints at the skull will need special care each day, and Henry will not be able to have a full bath or shower while wearing these things. I am also concerned about the heat of the summer and how hot our house gets. Anyway, one day at a time so we'll cross these bridges when we get there.

I guess I should wind this up with specific prayer requests. We can't thank you enough for remembering us in prayer and encouragement. 
  • Surgery on June 10th @ Shriner's in Portland
  • Peace and trust throughout the process, especially for Henry as he becomes more anxious
  • Our stamina, health, and rest during the hospital stay
  • Our other two sons during the week
  • Clear directions and memory of post-surgery care
  • Adjustments upon returning home
  • Our wisdom as to summer activities and that we would still have a nice summer break
  • Quick healing for Henry and that the fusion would "take"
  • Details to come together for a motorized scooter for Henry
  • Some sense of normalcy for all of us in all these changes!
We are so blessed with this little guy and willing to go through whatever is needed to love and care for him. The Lord has gone way beyond what we each deserve to care for us, allowing His own Son to suffer and die in our place, so it is our privilege to keep discovering and growing in this great love as we care for our son, no matter what the cost. I know that I always feel that I receive more than I give, and we can truly never outgive God! Praise God from Whom all blessings flow. God's love and blessings to each of you!

Friday, May 30, 2014

Beautiful Messes

While I have a slow week, I thought I'd bring you all up to date. Life is about to get messy! On the Saturday of Memorial Day weekend, our family attended our very first Little People of America regional conference. Though we had to leave early, it was an amazing day of connecting with other families of both average and short stature; some just starting out on the little people journey and some who have been on it for quite some time; some embracing the journey and some really struggling with it; some with more severe medical conditions and some lesser; but all affected in one way or another, and in my eyes, beautiful. I feel really blessed that our family is a part of this community now and know it will benefit Henry especially.

 Randy and I joined in the regional business meeting, then heard from an expert doctor in dysplasias at Seattle Children's. He talked about the historical perception of people with dwarfism (gods, pets, defective, and now???). After lunch, we heard from a nutritionist. Volunteers from Camp Korey (a camp specially designed for children with life-altering medical conditions so they can safely enjoy the activities of traditional camp) provided childcare and fun activities for all the children. Our two oldest boys went with the older kids group and had a blast. They befriended children with dwarfism and played so naturally with them. We were so proud of their ability to see people as people, no matter how short or tall. I think there's a Dr. Seuss book about that:) 

Henry was well cared for and had a blast doing the activities as usual. We didn't meet any other children with SED but we did meet a young lady just adopted from China a few months ago who has another bone condition. She is in wheelchair and I think Henry made a special connection with her. I was inspired by her adoptive mother who also has the condition and traveled to China to get her. I can't imagine the challenges of traveling in such a non-accessible country as a foreigner, but what a picture of the kind of strength and courage God gives us. 

Our family had a really nice Memorial Day and is so thankful for the sacrifice of countless men and women to protect our freedoms and very lives. It was a beautiful afternoon on Monday when we headed to Northwest Trek to ride the tram and walk the grounds to see many amazing animals. Henry saw so many new animals to him, and says his favorites were the beaver and bison. We also saw caribou, elk, mountain goat, black and grizzly bears, deer, bighorn sheep, and much more. 

Henry had his first playdate at home this week with a friend from preschool who also has a form of SED. At first, Henry wanted to know why the boy was playing with his stuff:). It was really sweet and I enjoyed visiting with the boy's mother as we are and will be going through similar things. I have been truly amazed and blessed at how the Lord has provided different people from a variety of places to walk through this journey with us, with me. The majority of time, our days are so full of love and laughter, learning and growing together. But there are days when one, both, or all of us are just struggling to get through. I've started reading a wonderful book called "The Spiritual Art of Raising Children with Disabilities" by Kathleen Bolduc, and it has already been such an encouragement and support to understanding and accepting the highs and lows of this journey...because there are certainly both. But, in God's hands, we are all beautiful messes and He does make beautiful things out of the broken pieces of our lives when they are offered to Him. I know Henry is learning so much, but perhaps we are learning the most. We certainly do need each other and we couldn't have been blessed with a more amazing little boy to adopt. Thank you, Jesus!

Coming Up...
It is only 11 days now until Henry's surgery at Shriner's. He had to have some pre-op blood work done yesterday and he just smiled through it. So brave so quickly! The Lord has provided some friends to keep the older boys during the surgery so they don't have to miss school. Randy will be with Henry and I for a couple days, then need to return to work and the boys. We will be in the hospital for 5-6 days and have to go up next Wednesday for pre-op consultation. I have also inquired about a wheelchair or motorized scooter for Henry for school next year so he will get to practice on one when we are there next week. He is pretty excited about that! He's already asking me how fast can it go.:)

Next week, we also have Henry's 6-month post adoption home visit, a well-child doctor visit, and I will get to see him participate in his preschool's end-of-year program. I also have a root canal scheduled- fun, fun. So, with the visit to Portland also, you can see it will be a full week just prior to his surgery. There are a number of preparations to take care of, so please pray for all of these details and events. I cannot thank you enough; we sense them especially on those hard days and when everything comes together just as it should. We can truly trust God in the highs and lows, good and bad. I will keep you posted with specific surgery-related prayer requests as we get closer. And, of course, there will be a learning curve and many adjustments following. Blessings!