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!

Wednesday, May 14, 2014

New Surgery Date

We got called by Shriner's this week and Henry has a new surgery date of Tues., June 10th at Shriner's. Henry has been discussed a lot lately in preparation for the surgery, and as a result, it has been determined that the C1 and C2 spinal fusion will proceed as planned but without being fused to his skull. Apparently it is unnecessary and Henry will maintain more mobility in his neck without it. With this change, the neurosurgeon at Doernbecher Children's Hospital isn't needed and the surgery can be done at Shriner's by just his spinal doctor. Everything else remains the same with intubation, the halo and vest, etc. We will probably have a pre-op appointment the day before and then be in the hospital for a week, more or less, following the surgery. I don't know if this decreases the risk but more mobility is definitely a good thing if it is best for Henry.
We had a really sweet first Mother's Day together as a family. In fact, with gorgeous weather, we had a wonderful Mother's Day weekend. On Saturday, we had a nice walk and Henry got to see his first t-ball game on the way. Then, after watching the high school soccer district play off, Henry got to play his first bowling game. Then he got to watch his first tennis as the boys and I played. What a fun day of sports!

After worship on Mother's Day, our family had a quick lunch in Olympia and then enjoyed the beauty of Nisqually National Wildlife Refuge in Lacey. We saw so many birds, including lots of Canadian geese with their babies, a sea otter, squirrel, and rabbit along with the lush forest and farmland. One of my favorites was the long bridge over the area where the freshwater of the Nisqually River combines with the saltwater of the Puget Sound. And the weather couldn't have been more perfect!

The day ended with one of my favorites...Indian food! Henry had his first experience with it and really liked it. Besides pickles and just a few other things, he really will eat just about anything; which makes taking him out even more fun! I was blessed by the boys' own personal Mother's Day creations. Here is a photo of Henry's hand print flowers. He was so excited to present his gift to me on "Mommy's special day." And I was so blessed!

Once again, thank you for all your prayers, concern, and support. I keep saying that we have a long road ahead but honestly, we live one day at a time to make the most of and be thankful for. As Scripture says, "But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own" (Matthew 6:33-34, NIV). We are trusting God's timing and care for our Henry...His Henry...and so appreciate prayers for all the details, preparations, and adjustments throughout this journey. Much love to all!

Saturday, May 10, 2014

Through Mommy's Eyes

It's been a few weeks since writing so I thought I'd post a quick update on Henry. First of all, today was five months since his Gotcha Day in China! We will be having a 6-month post-adoption home visit in the next few weeks for the required China report. He is doing great in so many ways- loving preschool, family, the spring sunshine and flowers, and playing whatever and whenever he can. He needed another CT scan recently and we enjoyed a visit to the Lan Su Chinese Garden in Portland's Chinatown afterwards. Anytime it is nice outside, we try to be out in it as much as possible. Now Henry has a canopy over his sandbox play area in the front yard to shield him from the sun. This is a great way to keep him busy and safe while I get some yard work done! 

Henry brings so much joy to our lives each day, even as he requires a lot of supervision, care, and interaction. Sometimes his insecurity and fear of separation comes out, but mostly he is just easygoing, cooperative, happy, and adventurous. I always have a buddy to try new things and visit new places with! Probably our biggest challenge is my energy level and work load, needing breaks to rest and take care of myself...which can sometimes be a source of anxiety for Henry, but he is definitely feeling more secure and learning that Mom is much better when I get those things! Afternoon nap time is one of our favorite times as we get to rest and snuggle together.

His language is coming along nicely; I get so excited to hear him speak full and sometimes complex sentences. English is so difficult, though, and he continues to learn new words each day while trying to understand why the same words can have different meanings and how they may change just slightly or totally depending on tense, quantity, gender, etc. He likes to meet new people and will almost talk to anyone, but thankfully he doesn't usually want to go off with them. We've had to talk about safe boundaries and strangers...not everyone is a wonderful, caring, and trustworthy volunteer from New Day!:) The good thing is that he trusts us to care for him and to only entrust him to people we know will take good care of him. This becomes very important when separation must occur, especially in the major surgery coming up that he is not looking forward to.

The c-spine fusion surgery is officially scheduled at Doernbecher Children's Hospital in Portland for June 2nd and things are coming together in preparation for this. That is only 24 days away and yes, I am nervous about it. I am mainly apprehensive about the halo attached to his skull and caring for him while wearing it. The hospital staff will prep us wonderfully, no doubt, but still...and I wonder how the heat of the summer will affect him in the halo and vest. We have to figure out how to cool the house down for sure. Not a lot is planned for the summer and basically we are in wait-and-see mode. I took him to the eye surgeon just this week and hopefully he will be scheduled soon for minor surgery on his left lower eyelid to turn it out as the eyelashes are scratching his retina. Change is in the air in a lot of ways, so thank you for prayers in all these details!

I will keep you updated as we get closer to and go through surgery. We so appreciate your love and kindness for our precious son and to our family. As Mother's Day approaches, I can not help but feel beyond blessed to be a mother to our incredible three sons. This current season of my life in which I can really only focus on and care for my family is one that I treasure and wouldn't trade for anything. Not only do I love these guys more than I can say, I am growing and learning so much about myself (the good, the bad, and the downright ugly) and about the incredible nature and character of God in the midst of it all. Happy Mother's Day to you special ladies out there! You are dearly loved and appreciated!