Sunday, March 23, 2014

Quite the Journey

All ready for preschool!
We've had a hard week in the Brown household, particularly because I have had a terrible head cold and traveled to take Henry to Portland for his CT Scan and neurosurgeon appointment on Thursday and rest was hard to come by. It was a productive and smooth medical trip, just wore me down further and I am still struggling to get healthy. Henry has some congestion as well, which seems to come and go, so we only made preschool one day this first week.

Preschool went really well, considering that I don't think Henry was feeling that great either. We had a good care meeting with staff prior to class, then he played well with the adults as children came in. When everyone was called to Circle Time, he sat down and then started to cry and hold onto me. He was thinking about me leaving and though we had talked about that a number of times before, he couldn't understand why I would do so and was obviously experiencing separation anxiety at the thought. After some consolation that I would stay, he began to participate and play as I watched from the background. At one point, I told him that I needed to go to the car for a few minutes but would be back soon, and he was okay with that. However, when I did return, he gave me an indignant look and said, "Why you going?":) He's not one to miss much of his surroundings and having me there is a comfort to him right now. It's a good sign of attachment as well, I just want him to have a positive experience, make some new friends, and learn some things as he loves to do. He certainly has wonderful people in the classroom who will take really good care of him, and for that, we are so thankful. It looks like I will have to forfeit the personal time I was hoping to get while he is in school for now. We'll see how the next weeks go, but with spring break and surgery, a routine is going to be hit and miss. looks like these next weeks are preparation for a major procedure that will impact all of our lives in the months to come. I will do my best to explain what I gained from the neurosurgeon visit, but I do have trouble remembering medical terms. First of all, this neurosurgeon and Henry's spinal doctor who team up often will do a cervical spine fusion surgery at the base of Henry's neck, involving the C1 and C2 vertebrae, and possibly C3. The way Henry's spine is forming and colliding with bones at the neck has already caused damage to his spinal cord as seen by his lack of control in moving his legs, feet, and toes. This is a high-risk surgery and besides paralysis, etc., there is a chance that the fusion could not take and need to be done again.  He has to be very closely monitored throughout the process and assuming everything goes smoothly, will be in the hospital for 5-7 days following. During the surgery, Henry will be fitted with a halo, perhaps similar to the one in this picture, which will be a huge adjustment and require great care. Frankly, pins being attached to our son's skull freaks me out, but with God's help, we will all take it as it comes and stay calm and positive for Henry's sake. We certainly are encouraged by the frequency of this kind of surgery and the positive outcomes, and most of all, that our God is ultimately in control and guiding this whole process with His strong, loving hands.

The neurosurgeon also noted that Henry is having lower spinal and hip issues, so wants an MRI done on that area before the surgery. At this point, we have a follow up visit with the spinal doctor on April 10th and the lower spine MRI on April 17th. We should be getting a call from the neurosurgeon's office any day to schedule the surgery, which will probably be about a month or so out. I will keep you all posted and so appreciate your prayers in this journey. Henry is pretty cooperative and accepting of medical care, except for shots:), and seems to be taking all of this rather well, at least what he can understand. When we have conversations about why keeping his neck stable and protected is so important, and what the surgery is all about, he will say it is all so he won't get more hurt or die. A few times he has said, "I go to Jesus," when contemplating what dying means. He is such a deep thinker at age 4! These kinds of things bless and hurt my heart at the same time. We don't know what God's plans are, but we lay our son, hopes, and fears at His feet, and know with utmost confidence that He will not let go.

Thank you so much for your prayers...the adoption was nothing compared to the journey we have ahead. And we are looking forward to many more wonderful days and times as a family. We can't wait to take Henry to the ocean for his first time over spring break, and hopefully all will be well enough by mid-summer to go to an Oklahoma family reunion and meet my side of the family. We have so much to see and do yet, and are already enjoying the beautiful spring flowers, greenery, and sunshine. We have a GOOD God! Blessings!

Tuesday, March 18, 2014

A New Season

Hi everyone...I've been needing to write a blog update but have been so busy with life, medical trips, and single-parenting the boys over the weekend. I really do want you to know how things are going and what is coming up so you can be praying. The slower season for adjustment and attachment with Henry in his new home and family is passing as a season for school and medical care takes its place. Tomorrow morning, Henry begins his first day of preschool with his gear and Lightning McQueen backpack. We will have a care meeting with the teacher and nurse first thing to make sure everyone is on board concerning his health while at school. I will get to introduce Henry to his classmates before stepping out until time to pick him up. He will attend twice a week for two and a half hours in the morning. He has been SO excited but tonight he was wondering where I will be and how long, so we will see how the first day of separation goes.

Now, on to the medical season...first, check out Henry in his new glasses! He already can see better and feels pretty comfortable in them. They are green, his favorite color, and we think he looks so handsome and grown up in them. 

We had a really important visit to Shriner's last week. Henry did very well with his MRI, though he is really scared of needles and was upset about the IV put in his hand. However, he fell asleep immediately when the medicine was given and had no problems during the MRI at all. He just didn't want to wake up when it was over:).

View of Portland from our room
Our overnight stay at the Shriner's guesthouse went well and then, after a couple of x-rays the next morning, he saw the spinal doctor. I was quickly informed that Henry's cervical spine in his neck is at extremely high risk of damage causing paralysis or even death if he were to have a sudden, sharp movement of his head forward or backward. He was put on the urgent list for a CT Scan, appointment with the OHSU pediatric neurosurgeon, follow up with the spinal doctor in one month, and then neck surgery with both of those doctors as soon as both are available. I don't know all the logistics of the surgery but the doctor said something about spinal fusion and metal rod insertion. Due to a cancellation, Shriner's called today to tell me that Henry has a CT Scan and neurosurgeon visit scheduled for Friday morning, after which I should know a lot more. We will head back to the guesthouse Thursday evening. 

As a result of Henry's neck and spinal instability, he was immediately fitted with a cervical collar that he must wear at all times, except for sleeping, bathing, and eating at our discretion. The car is the most dangerous place for him, but any type of mobility puts him at risk. Henry has worn it like a true champ from day one with very little comment about it, except to say it's a little tight or that I need to take it on or off. His level of trust, understanding, and cooperation amazes me. We are so blessed and he is much happier with such an ability to go with the flow and make the best of things. We could learn a thing or two from him!

As you might can imagine, this is pretty serious time for Henry's medical care and your prayers are so needed and appreciated. I tend to not look to far ahead and worry, and certainly do not have the brain space or energy to do so right now, but the reality of this kind of surgery on Henry is hitting me. We are beyond thankful that nothing has happened to Henry so far, as active as he has been and with the falls he has already had. God has truly been watching out for this sweet boy from the get-go. One of the Bible verses and songs we just learned is from Hebrews 13:6: The Lord is my Helper; I will not be afraid. It is times like these that we see so clearly how He helps us and has helped us when we didn't even know it. Henry often wonders why he can't see God or where God is, so we talk about how He is SO big and so strong that He is everywhere all the time, holding everything is His huge hands...including us! And that He comes to clean out and live in our hearts when we ask Him. These truths can be so trivial to those of us who think we have it all together and don't need God; but they become so important and real to the one who knows that every breath and every day is a gift. I want to live in this constant awareness, and if it takes my son's health needs to remind me, I gladly accept it.

Glasses and neck brace do not slow this boy down!
I'd like to close with some sweet things concerning Henry, even as I ask you to please remember him in prayer. He has such a personality and was in silly mode most of the day today. I actually had trouble telling if he was joking or not at times:). His English is improving so much and he now says "Where's Daddy?" instead of "Where's the Daddy?" for example. He is learning that males are referred to as "he" and "his," while girls are "she" and "her." He continues to ask lots of questions and make incredible observations about his surroundings. He also is learning the appropriate time and way to ask questions, use his manners, or express his needs and wants. We have had multiple conversations about China and New Day. He will say, "At New Day, we did (such and such)," or "I did not eat/do that in China." It's fun to see his perspective on things and it is obvious that he was well loved and cared for prior to our getting him. For that, we will be eternally grateful.

So, if you are reading this and had some part in praying, giving, and/or caring for our precious Henry...THANK YOU!!! 

By the way, Happy St. Patrick's Day! 
How about some green Chinese dumplings made especially for you by Henry?


Thursday, March 6, 2014

Appointments Aplenty

We had a great week of appointments with more to come next week. The biggest one of the week was on Monday for Henry's eye examination. He saw a pediatric opthomologist who specializes in eye diseases and has experience with Asian eyes, so it was a very thorough, informative visit. Henry's eyes are both weak, at 20/40 and 20/100, and he has astigmatisms in each eye. This explains all the headaches, looking sideways a lot, light sensitivity, and blurriness. He also has an eyelash scratching a cornea due to the Asian eye formation, so that will be removed when it becomes more severe. We have picked out some adorable glasses for Henry and he'll be getting fitted tomorrow, then the lenses will be ordered. So, we are very thankful to have some answers now, and very soon, Henry is going to so amazed at what he can see! He'll no doubt soak in even more with better vision. 

Yesterday, Henry had his hearing tested; just as I thought, he has excellent hearing:). He just has some middle ear pressure off, but nothing notable at this time. Today, we had Henry's IEP meeting to review his assessments with the staff and talk about the goals we all have for him in school. We are really impressed with the work that has been done already to get Henry all set up and we are really excited for him. He officially starts in the 3 yr. old's preschool on Tuesday, March 18. Class is Tuesday and Thursday each week from 8:20am to 10:50am. At the end of the year, we will assess whether he is ready for Kindergarten or needs to go on to the 4-5 yr. old's preschool. The class he will be in this year has 12 children, all with a variety of special needs, so Henry should feel right at home and hopefully make some new friends. He is going to receive OT and PT some during classtime each week, and be given lots of opportunity to use his walker. They are preparing handles, steps, chairs, etc. to help him maneuver around as well. And, he'll get to ride in a wagon to/from playground...I think Henry is going to have a great time!

We went swimming over the didn't go as well as Henry was tired and not feeling good (though he wouldn't tell me beforehand because he REALLY wanted to go swimming). After about five minutes, he was done and I was frustrated. We cleaned up and watched the brothers swim the rest of the time. We'll give it a go another time...I hope he keeps at it as it is great exercise and good bonding time as he learns to trust me in the water. I can imagine how scary it must be with so little control over what is happening. He is quite brave though, and adorable in his new swimsuit, don't you agree?

Henry also survived his first babysitting as Randy and I went on a date and friends stayed with the boys for the evening. They had a fun time and even though Henry was excited about people coming to play, he sure did cry about me leaving. Joshua cheered him up pretty quick and the rest of the evening went great. His tears are actually a good thing as it shows his attachment...I wonder how his first day of school will go!

Some other highlights of the week include story time at the library where Henry made a cow puppet, Henry's new and improved silly faces, and his new fascination with playing baseball. Remember my post about his role playing? Well, now he is a baseball player!

Next week is a BIG one...perhaps our most important yet in terms of Henry's medical evaluations. On Tuesday, he and I head to Shriner's in Portland where he will be put to sleep and get the MRI for his back and neck. We will stay at their guesthouse that evening, then Henry will see the spinal doctor early Wednesday morning. The information gathered is critical and I hope it gives insight into what can be further done to help him...please pray that it does so!

I will keep you all posted and certainly will post a picture of Henry with his new glasses. Thank you for keeping up with us and for your prayers. Henry continues to do great, his stomach pains have subsided with perhaps a bug he had, and he is so full of life, love, and learning that he truly makes all of us smile and thankful each day. What a gift we have been given...Blessings!

Henry's declaration of love to me:)