Not Knowing

Well, God is clearly trying to keep us dependent on Him and we're thankful that He is the omniscient (all-knowing) One! When we think we've become comfortable with Tanner's future, God reminds us that ultimately, we don't need to know what the future brings, because He does!

Today we went for a follow-up appointment with Dr. Matalon (the geneticist) in Texas City. We went expecting very little and assumed that we would leave with no new information. We explained to him some of the changes we've seen in Tanner over the last 6-12 months. Changes that include worsening balance, worsening fine mother skills, tremors, cognitive decline, increased headaches/migraines, increased weakness and intermittent blurriness in one eye. After discussing our concerns, he has decided to refer Tanner for some additional evaluations. He'd like some new bloodwork to be done that may identify additional genetic abnormalities. He's also recommending a neurosurgery and cardiology evaluation. To our surprise, he's not completely convinced that Tanner has leukodystrophy. But, if it's not, then the challenge becomes determining what is the cause of all of these problems.

So, as usual, we left with a lot more questions than answers but, we are hopeful that the neurosurgeon can help find some solutions for the headaches.

So, how do we feel about all of this? Confused, sad, hopeful and peaceful. A better description comes from the song "I will Rise" by Chris Tomlin. "There's a peace I've come to know, though my heart and flesh may fail. There's an anchor for my soul, I can say, it is well. Jesus has overcome, and the grave is overwhelmed, the victory is won, He is risen from the dead."

With tears, we can continue to praise God for bringing Tanner into our lives and allowing us to glorify Him through these struggles.

We would appreciate your prayers as we make these new appointments, for wisdom in making decisions and sorting through this new information. Also, for us to be accepting of whatever comes as well as for us to be patient and comforting to Tanner as he struggles daily with pain and headaches. Thank you for your continued love and support for our family.

5 years ago....

Last week Jon and I enjoyed Clearwater Beach, Florida. Jon had a conference and I was able to go along and enjoy the beach! We had fun spending time together, eating good seafood, walking on the beach, snorkeling with manatees and scuba diving! Tanner stayed home and enjoyed a fun week with the Walsh family. We are so grateful for their willingness to take care of him so that we could enjoy some time away.

While away, 2 anniversaries occurred. Our 17th wedding anniversary, and the 5th year anniversary of Tanner and Alexis' arrival! When I told Tanner that our wedding anniversary was coming up, he was excited and said that he wanted to walk ahead of us down the aisle and throw flowers - he was so sincere, I did everything I could not to laugh!

The other anniversary, January 28, 2005, was the day we met Tanner!! How our lives have changed in 5 years!

I spent an afternoon reading through the first few months of notes of daily activities that are required by the state for foster parents. I had forgotten so many things! Such as how much he hated to get dressed! There were daily notes for many months about how he would tantrum every morning when he had to get dressed, and then how he would love to see the bus when it arrived. It's great to look back and see the progression of his language, how he was learning please and thank you, learning to share and always excited to learn new signs. There were also daily notes of the many tantrums, 5-6 every morning before school and multiple times in the afternoons/evenings (one day it was noted there were a lot less tantrums that day, only about 20-25 total). There were also many descriptions of his difficult time going to sleep, learning to go to the bathroom, and even notes about headaches.

Who knew then that those headaches would still persist today, and that they would mean more than just headaches! Thankfully, the depakote is still working and his migraines have continued to be less and without vomiting! He's still having them occasionally (about once a month), but, not entailing ER visits.

We've both been struggling more lately, with seeing more regression, looking back and seeing things he used to be able to do and can do no longer. But, it's truly amazing the blessing of God's peace, there are still many emotions and much sadness, but, it's truly a peace that transcends all understanding.

I love how God often speaks through music! Yesterday, when Tanner was home from school with a migraine, I was really sad for him and that I could do nothing for his pain, and then I heard the following song and loved the reassurance it brought.

"Safe" by Phil Wickham

To the one who's dreams are falling all apart,

And all you're left with is a tired and broken heart

I can tell by your eyes you think you're on your own but you're not all alone

Have you heard of the One who can calm the raging seas

Give sight to the blind, pull the lame up to their feet

With a love so strong and never let you go oh you're not alone

Chorus

You will be safe in His arms, You will be safe in His arms

'Cause the hands that hold the world are holding your heart

This is the promise He made, He will be with you always

When everything is falling apart, You will be safe in His arms.

Did you know that the voice that brings the dead to life

Is the very same voice that calls you to rise, So hear Him now He's calling you home

You will never be alone

These are the hands that built the mountains, the hands that calm the seas

These are the arms that hold the heavens, they are holding you and me

These are the hands that healed the leper, Pulled the lame up to their feet

These are the arms that were nailed to a cross, to break our chains and set us free.

Happy New Year!

Wow! It's the new year and it's again been a long time since my last post. Sorry to those of you who've been checking.

We had a busy December, with some of our activities including iceskating with Santa, making Christmas cookies & decorating a gingerbread house. We drove to Michigan for Christmas & on the way stopped in St. Louis for a few hours to see Nece, Steele (Jon's sister & brother-in-law) & nephew Trey. We had a fabulous week in Michigan spending a lot of time with family. Then, we had a fun week with our niece Cheyenne here between Christmas and New Year's and painted pottery, went bowling and to the Houston zoo. If you're interested in some pictures, you can see them by clicking here:

http://www.facebook.com/album.php?aid=146098&id=605600215&l=b2c23453ef

Well, Tanner's migraines are still mostly at bay, praise the Lord! We're so thankful that we've not had any ER visits in the last few months! The new medication definitely seems to be working on the migraines. Unfortunately, it has not kept his daily, chronic headaches away. For the last month or so, he's had a chronic headache that has not been controllable. He's definitely not been himself. This week we started back on a medication he's been on previously to see if we can get this headache under control.

It's sad for us to see him hurting and not wanting to do things he normally enjoys because he's not doing well. He still does not complain and is an amazing boy. We can often tell he's not feeling well, but, it's also easy to forget he's crabby more than likely because he's not feeling well. I often then feel badly for reprimanding him. This is actually something we would love prayers for, to be patient & loving with him at all times.

We watched Tanner's adoption video recently and realized that he's definitely lost some of the skills he used to have, and this was difficult to see as well. Recently, I've been listening to the book "The Last Lecture" by Randy Pausch. It's an excellent reminder to live and enjoy each and every day and moment. Tanner does this well, but, it was helpful to hear it in a different way and be reminded again!

A few weeks before Christmas Tanner became very interested in talking about death (this wasn't too long after Grandpa DeKorne's funeral). He asked a lot of questions and was very curious. Some were cute and funny, some were very serious and difficult to answer. He was excited that when he dies he'll get to be with Jesus. One very poignant moment, was when he was praying at dinner, he prayed "thank you, Jesus, that I will go to heaven and be with you and help mom and dad when they're sad, here on earth." WOW - of course, he does not even know that he probably will be going to heaven before us, nor does he know about the leukodystrophy. As hard as it was to see him sign that, it was really beautiful to see how the Holy Spirit is working in his life! The next day, Tanner went to school and informed everyone "you all will die, you will die in the future." I had warned one of the teachers, but, hadn't told them all - oops, it was a bit of a shock to everyone :)! He also told them that if they want to go to heaven, they need to ask Jesus in their heart! A great little evangelist!

We love how we see so often Tanner's tender heart. He prays about once a week, "Thank you that we can be a family, that I am mom and dad's son and that I am adopted." It is so precious and touching, what an amazing blessing we've been given.

We are truly so thankful that Tanner is in our lives for whatever length of time he's here. He is filled with such joy and brings it to our lives as well! Thank you for your love and prayers for us!

It's Fall!

Wow - it's been 2 months since I've last posted! And I thought things would improve once school started.

I'll try to give you a quick synopsis of what we've been up to.

In early October we enjoyed a family reunion at Frontier Camp celebrating Jon's grandfather's 90th birthday (and the 40 year reunion of Frontier Camp). Almost all of the family was there and Tanner loved spending time with lots of cousins!
We enjoyed our first weekend of camping in our new (to us) pop-up camper! Tanner absolutely loved it and can't wait to go again.
We enjoyed a trip to Upland, IN to attend our 15 year college reunion/homecoming at Taylor University. We had a great time visiting with friends, enjoying the cool weather, visiting campus (though Tanner wasn't quite as thrilled as we were), and also spending time with family!
My parents came down with the other grandkids & we enjoyed spending part of the weekend together (Tanner was thrilled to spend time with his cousins!)
We were also able to enjoy some fun with great friends in Indianapolis, enjoying lots of coffee, good times, campfires, and fun at a pumpkin patch!The following weekend, we took an unplanned trip to Michigan to celebrate the life of my Grandpa DeKorne. He was 93 years old and a man who loved his Savior! Tanner wanted to stand up at his funeral and say something about grandpa. He stood up and signed "Grandpa is now in Heaven, I will see him again in Heaven. I liked playing with Grandpa. I love you and miss you Grandpa." It was so precious. The picture below is from January, 2009 when we were in Michigan. Just before leaving the funeral, my Grandma Lenger fell and broke her hip, requiring surgery. I was so thankful that I could stay an extra 5 days and spend time helping Grandma in the hospital. She's working hard and improving at a rehab hospital, and we're looking forward to seeing her walking around on her own at Christmas!For Halloween, Tanner wanted to be a soldier, just like Uncle Steele. So, Aunt Nece & Uncle Steele sent Tanner an air force uniform! He was so proud!
This past Friday Tanner went to a high school football game in his A&M Consolidated High School's football jersey from his friend Patrick & took pictures with some of the players. He really enjoyed being on the field before the game started. The second picture is of Coach Walsh, Tanner and Patrick. He was so proud and even was able to run out with the team before the game started!
So, that's the quick version of the last two months!

Tanner is still loving school and doing ok. He's not feeling as well as we'd like him to. He's had a few migraines that now include some visual disturbances (blurred vision). His new medicine seems to be helping the migraines, but, he still has daily, chronic headaches that don't go away & seem to be worse than previously. We've noticed some more balance problems lately as well.

So, we continue praying, worrying, and wishing for something different. Yet, we still know that there's someone greater, Who is all knowing, and all powerful, Who already knows what will happen and gives us His strength to get through each day.

"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:6

This and That

So, I don't have a lot of new things to say, so, I figured I'd update on several miscellaneous things!

Tanner is really enjoying school. He's doing well in 3rd grade and learning a lot. He's in deaf education for reading and language, and is mainstreamed with an interpreter for the rest of his classes. He loves school, we're so thankful for that!

One day, in social studies, the children were writing what their parents jobs were, and Tanner wrote down that his Dad is an office worker and his Mom is a typist. We cracked up when we heard this! Yesterday he came home and admitted that he hit a student, and explained the boy laughed at his underwear. So, while trying not to laugh myself, we discussed next time, he should try to ignore the boy.

A couple of weeks ago we saw the pediatric neurologist, who was not very happy with how Tanner's migraines have been progressing. So, we've changed medications again. This is our last option for what's approved for children and has some side effects that we need to keep an eye on through regular bloodwork, but, so far, it seems to be working. We're weaning him off of 2 other medicines, so, we're happy to have him down to 2 instead of 4! We're also hoping and praying that this will work for a while, most of the medications seem to work for a couple of months and then lose their efficacy, we hope that doesn't happen this time. It's also been about 2 weeks since his last migraine, we're so thankful for that!

I'm not sure I've previously shared this before but, thought it was special and decided to write about it. One evening this summer, after we had been to the emergency room with Tanner I fell asleep, but, slept restlessly. I woke up in the middle of the night singing the chorus of a song from the Gaither Trio. I hadn't heard this song in many, many years - and yet, what a blessing and special comfort for God to give me this song. I sang the chorus for days, feeling such a comfort and reassurance - and thank the Lord for this amazing gift. Here's the song:

"Because He Lives" by Bill Gaither

God Sent His Son, They Called Him Jesus; He Came To Love, Heal And Forgive.
He Lived And Died To Buy My Pardon; An Empty Grave Is There To Prove My Savior Lives.

Chorus:
Because He Lives, I Can Face Tomorrow
Because He Lives, All Fear Is Gone
Because I Know He Holds The Future
And Life Is Worth The Living, Just Because He Lives

How Sweet To Hold A Newborn Baby, And Feel The Pride And Joy He Gives;
But Greater Still The Calm Assurance: This Child Can Face Uncertain Day Because He Lives.

And Then One Day I'll Cross The River; I'll Fight Life's Final War With Pain.
And Then, As Death Gives Way To Vict'ry, I'll See The Lights Of Glory And I'll Know He Reigns.

Labor Day weekend we took a trip to visit Jon's sister and brother-in-law, Nece & Steele at Whiteman Air Force Base in Missouri. Tanner loved all of the airplanes, and we enjoyed some relaxing time with family as well as the cool weather! Here are a few pictures from the trip as well as a couple of pictures from a fun day hiking and at a park this past Sunday.