Monday, April 21, 2014

Through Henry's Eyes - Update

We have had some fun and productive few weeks since I last wrote. First of all, Happy Easter from our family! We hope yours was a blessed one...ours sure was! We remembered our Savior's death on Good Friday by participating in a community worship service, coloring eggs and watching Jesus videos on Saturday, then celebrating our resurrection hope on Sunday in worship and then an Easter egg hunt. We also had a yummy Easter ham dinner together at home. 
The whole week as we prepared our hearts for the weekend, Henry asked so many questions about it. It was really special to see the events and Easter story through his eyes. He was truly touched at Jesus love to die for us and wanted to know many, many details about everything. One of my greatest joys was watching him joyfully wave a palm branch at church last Sunday and then a strip of white linen on Easter Sunday. He truly got into every aspect of the season and it was an extra special Easter for all of us.

Spring break was a special time for our family to play and make memories, without the distraction of work and school. It was also a week of many "firsts" for Henry as we vacationed at the beach- first beach, first kite, first ocean viewing, first lighthouse, and more. We had some beautiful sunny days at home to play so Henry enjoyed his new sandbox and toys given to him by friends. Then, the boys and I had fun at the Hands-on Children's Museum. Enjoy the photos!
  

For more medical news, we had a very full, informative visit to Shriner's and OHSU on Thursday in which Henry had: a MRI on the rest of his back, blood drawn, a spinal doctor visit, measurements taken for his post-surgery halo & vest, and pre-surgery consultation at Doernbecher Children's Hospital. All of that with the drive back made for a very long day, but I was so glad to learn all that I did. It takes a couple days for me to recuperate following these trips:). The information can be overwhelming for me so I can imagine it may be for you as well, but here is a summary:
  • According to the spinal doctor, Henry's body is very complex!
  • The spinal doctor, neurosurgeon, and facilities are some of the best Henry could have working on him; but that also means it's difficult getting all of them together at the same time!
  • The earliest c-spine fusion surgery for Henry would be June 2nd. The doctor actually has three other small patients with spinal instability, so if any others are deemed more critical, he could actually be pushed back to a later date. We hope to know for sure in the next few weeks. 
  • Intubation for a child, and anyone with dwarfism and/or fusions at the neck, can be very dangerous and difficult, but after questioning staff, I am assured that they have the experience and understanding necessary to make this as smooth as possible for Henry. The Doernbecher Children's Hospital at OHSU is ranked one of the best in the country and after seeing the facility for myself, I am so thankful Henry is receiving care there. 
  • One of my concerns was what bone they would use for the fusion and I found out that they will take bone from Henry's lower back, so he will have that incision as well. Using his own bone versus donated bone increases the success rate of the fusion.
  • I have been prepped with what will happen around Henry's surgery...if everything goes as planned, he will have about a 4-hr surgery during which we will be prepped to care for him upon returning home, and he'll be fitted with his halo and vest; he'll stay in ICU the first night as his nervous system, breathing, etc. are closely monitored; then he'll stay an additional 4-5 days to recover before cleared to go home. He will wear the halo and vest for 2-3 months as needed, then perhaps the neck collar for a time after to keep everything straight and protected. 
  • Ideally, then, Henry would not need to wear anything at the neck and be able to function as usual, except for more limited movement side to side and forward/down. 
  • On the other hand, the MRI revealed that Henry's central spinal cord is being compressed by his spinal vertebrae and will need surgery sooner than later as well. We will learn more and deal with that as it comes!
  • After seeing the eye doctor again and having a few eyelashes plucked, Henry will need minor surgery on his left eye to turn his lower eyelid out. Currently, the Asian shape of his eye is causing the eyelashes to scratch his retina. 
A later surgery date has its pros and cons for us all...it means more spring to enjoy together before a huge life change and that Henry can almost finish preschool out. It also means less time for Randy or the boys to miss school should that need to occur, especially if the date is pushed out. However, it means more time for possible damage to occur while healing is postponed. It also means a very different summer for us! 

In all honesty, these kinds of things are so big and present too much unknown that I can only process and take one day at a time. It also makes me truly appreciate each day we have together to just do the normal things we enjoy. I have no idea how our family will be affected through it all, but I do know that God is in control, is faithful and sufficient for all our need, and that we will surely GROW in ways we cannot imagine. We will also see God do immeasurably more than all we could ask or imagine (Eph. 3:20) to bring glory to His name and good to our lives. These promises I bank on!

Thank you so much for continued prayer. As you can tell by reading, we need it, all of us! I will keep updates coming as I have them. The Lord bless you all!

**UPDATE: Henry is firmly scheduled for surgery on June 2nd! Please lift up all the many details ahead.

Wednesday, April 2, 2014

Spring Showers

We are experiencing spring showers in more ways than one! Besides being a super wet and tiring March, we've also made a good bit of progress for Henry in a number of ways and received a lot of love. One of our greatest milestones just this week was receiving Henry's American certificate of citizenship and then applying for his social security number. Next steps will be re-adoption in the county court and getting Henry's U.S birth certificate and passport. These are all really important documents to make things easier for him in the years to come. 

I have also been working on finding adaptations for around the home to make things easier and to help Henry be more independent, as well as, get him outside more. So far, these include a two-step stool for the bathroom sink, toilet step stool and seat, wagon with belt, faucet extender, baby shower hose, and child picnic table w/benches that fit his size perfectly. I was super proud to see him climb up and down to use the toilet all by himself! There is so much more to do over time, but these easy accommodations are helping until surgery and beyond give us more of an idea of what he will need long term.

Henry was so excited about the adoption shower given us on Saturday by sweet friends. It was a vehicle and Chinese theme, with his favorite on the cake...a fire truck! Henry was celebrated with presents and goodies, and I enjoyed the fellowship with girlfriends. Thank you! 

As you can see from the pictures, Henry not only likes any vehicle that moves, but he likes sports and games. He will play anything he can and especially loves to play baseball with his new ball and bat. He will hit the ball, then quickly crawl around the house back to home base. His creative mind and determination can live out just about anything he wants. Win or lose, he just enjoys a good time to the fullest, especially if it involves other people and using his leadership skills:). Whatever Henry does, he truly does it with all his heart. And what a heart he has...so precious and sensitive that when he disobeys, he will cry out, "I'm sorry, God!" and when we're having a hard time working something out, he will say, "Let's pray to God!" Truly, we need to become like little children in so many ways.

Henry has been to preschool three times now, and just yesterday, he went all by himself after declaring that I could leave. He did great and is looking forward to going back. In the picture to the right, he is playing hockey in P.E. and totally loving it. With just a little bit of imagination and adjustment, it's amazing what you can do! 

Besides a cold and stomach bug, Henry's health is doing well. We go back to OHSU and Shriner's on April 17th for the MRI on his lower back and follow-up spinal doctor appointment. I hope we'll be hearing soon on when his surgery is scheduled. The more I hear about this major c-spine surgery, the more I realize how serious it is and can be. I need to find out some more details about it but in the end, we have to trust God's hand to protect, guide, and heal. So, please pray for this amazing little guy and all the family will inevitably go through with surgery, whatever the result. 

My sinus infection is much better with medicine, but I am more and more aware how vital it is that I take care of my own body, soul, mind, and spirit for the long term. I am doing less outside the home but am struggling to keep up with what I need to do inside the home. I love the season I am in and know it is where I have been called to be, but how quickly a mother can wear out and be of little help to the family when her own needs are neglected. So, please pray that I find some kind of balance in caring for myself with all my other tasks, as blessed as they are! The warmer weather and sunshine are such a blessing right now as walks and swinging outside rejuvenate me. And with Henry in preschool a bit, I can get some real quiet time with the Lord and just to do whatever I need or want to do. I can't tell you how elated I can get now when even small projects are actually completed! 

Well, thanks for walking this journey with us...I won't pretend it is an easy one, and knew it wouldn't be, but the blessings far outweigh the troubles and hardship. In fact, Scripture would teach us that the troubles and hardship are actually blessings as God works in and through them to accomplish His good will for our lives, to HIS glory! May God grow my perspective to see what He sees so that I do not miss all that He has for me. Blessings!