Wednesday, November 11, 2009

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

Thursday, September 17, 2009

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.

Tuesday, August 25, 2009

End of Summer/Back to School

Well, I finished out the summer following my routine of not posting much!

We enjoyed the rest of the summer (or, more accurately, the time before school starts, since it's still summer and 100 degrees!) with a visit from my mom, some swimming, shopping, playing, and spending time together.

Here are a few pictures from my mom's visit.The Sunday before mom left, Tanner had a migraine, so, she took a trip to the ER with me (for IV medicine to stop the vomiting and try to decrease the headache) and Jon was able to stay home and sleep so he could go to work on Monday.

A week later, he had another migraine and ER visit. We've decided that we're there a little too often when the people at the front desk greet Tanner by name! :)

His migraines are worsening and no one can really tell us much about this. We are assuming it is because of the leukodystrophy (on a leukodystrophy forum, a lot of people discuss their struggles with migraines as part of the disease). We've tried different medicines and adding, increasing and changing them, they all seem to work for a little while. We will see the pediatric neurologist next week and see if he has any new ideas.

It's very difficult to watch him suffering, but, it's amazing to see how he gets through and deals with it. He's really an inspiration. Despite watching him in pain, it's not easy, but, Tanner's attitude and perseverance make it easier to try to live out Philippians 4:4-7

"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. "


This morning I was reflecting on the gardens and seasons. Most of our plants and flowers are brown, wilted and pitiful. The last few tomatoes are turning red, but, for the most part, those plants are finished. Soon, though, with the beginning of autumn, some of the plants and flowers will perk up and flourish once again. I'm looking forward to sitting outside, enjoying the cool weather and the blooming flowers once again. We're hoping and praying that Tanner will be like the plants that flourish and perk up once fall arrives, but, recognize that the season of more sickness and pain is realistic as well. Thankfully, most of the time, we do feel that peace which transcends all understanding.

On to a more enjoyable topic, yesterday was Tanner's first day of 3rd grade! He was excited and ready to go. He had a headache & didn't feel great, but, definitely enjoyed the day! Here are a few pictures!

Friday, July 31, 2009

Goodbye July

Well, I thought I'd try to get in one more update before the end of the month since I'm lagging in my summer posting, so, here it is!

Thank you for all your prayers while we were at TSD (Texas School for the Deaf) in Austin a couple of weeks ago, Tanner did GREAT! Thanks to everyone who cared for him - it was so helpful. He did not have any migraines, praise the Lord! It was even another week after we were home before he had one (which was 2.5 weeks since the previous one - yeah)!

We had a fun time at La Torretta in Conroe and enjoyed a relaxing weekend as a family. Tanner wasn't too thrilled back at home with only mom again, but, he's excited that Grandma Lenger is coming to visit next week (actually, we all are excited), so hopefully we'll have some fun things to share in the next post.

Have a great weekend!

Thursday, July 9, 2009

Quick update

Wow, I'm definitely not a good blogger in the summer! We are enjoying our summer and are looking forward to next week. Tanner will be staying with some friends and attending police camp at the children's museum, while Jon and I attend a communication skills workshop at Texas School for the Deaf in Austin (all in ASL). When the workshop is finished, we're all excited to spend the weekend at a hotel while Jon attends a conference for work.

Tanner's migraines have not improved. Since the last post Tanner has had 2 or 3 migraines and is trying to avoid one as I'm writing this. We've increased one of the medications and changed the time we give it to him and are praying that will start working soon.

I think that Jon and I have both been down lately because of this. Wondering about the future, trying not to worry. We are trying to focus on a Father who knows the answers and holds us all tightly in His arms, but, are still sad about the pain and suffering Tanner is going through.

We would appreciate your prayers for his headaches, and specifically, that he would not have any next week while we are in Austin. Thank you for your love for our family.

Monday, June 22, 2009

It's Summer!

It's definitely summer here! We've been busy ever since school finished.

We had a great weekend in Rockport at Camp Aranzazu as soon as school ended. Our amazing hosts and friends Tammie and Tracy Shelton brought us fishing, taught us the high ropes, and showed us baby foxes. We did a few other things that weekend as well and had a memorable time!
Here is Tanner climbing the rock wall at the camp.
The day after we arrived home, Tanner began swimming lessons. He loves the pool and enjoyed being able to swim every day for two weeks!

Tanner also had his last baseball game along with the closing ceremonies and of course, a trophy!








Last week Tanner went to "Beyond the Moon" camp at the George Bush Library. He loved it! Rockets are a big interest right now, so it was a perfect thing for him to do. His favorite thing was to stand on a floor that vibrates & shakes as you watch videos of the space shuttle taking off - the first day he went on it 8 times! Eventually he had to be encouraged (AKA, forced to leave) to join the rest of the class & see some other things!

This week we have Sports Camp at our church every evening, Tanner is excited that he will be playing soccer. We're not looking forward to the heat though (high 90's)!

Health wise, things aren't as good as we wish they were. I started this post last Wednesday, and stopped because we had to bring Tanner to the ER due to another migraine. He's continued having them almost weekly and the pain seems to be worsening. Normally, the meds at the ER stop the vomiting and also take care of the headache. This time, it stopped the vomiting & helped him fall asleep, but, he still had the headache the following day. We're hoping and praying the medication that was increased a few weeks ago is still needing some time to kick in!

So, that's the latest news here! Tanner is waiting for a tennis partner, so, I'd better get going!

Thursday, May 28, 2009

Birthdays and Baseball

I realized recently that Tanner has now celebrated more birthdays with us than without us! It feels like a milestone, it's so great to have had 4 years of celebrating Tanner.

What a lot of change we have seen in the last 4 years! He's learned to communicate, his personality really shines as we see his sensitivity, generosity, and humor. He's become a fun and thoughtful little boy who has grown significantly, both physically (it seems as though he's getting taller everyday) and developmentally. We love spending time with him, learning more about him, teaching him and loving him!

Tanner has been having fun playing challenger baseball this spring - some pictures are below from the season so far. He does really well hitting the ball, but is not quite as attentive on the field. He loves playing and we're so thankful he had this opportunity.

Tanner's migraines have started up again and have been occurring weekly for the past month. The medications haven't been working to stop the vomiting and he feels pretty bad. Fortunately, it usually only lasts for an evening and he feels better in the morning. He's mostly pretty cheerful despite his misery, he'll smile and sign I love you, even while vomiting, what a trooper! The doctor has recently increased one of his medications, so, we're hoping that starts working soon (it hasn't started yet, as he had another migraine tonight :( ). We would appreciate your prayers that this medication increase would start working soon, it's so hard to watch him suffer.

We're looking forward to going to Camp Aranzazu in Rockport this weekend to help them prepare for summer campers and visit with friends. It will be a nice celebration to the end of the school year!

Wednesday, May 20, 2009

a long-awaited visit...

We've been quiet on the blog lately as we've been busy spending time with our great friends Jim, Heather & KJ who came for a visit! We had a great time fishing, sailing, biking, playing games, drinking coffee, enjoying childrens museums, hanging out and watching the boys play (and fight) together.

Below are a few pictures from a memorable week.

On the health front, Tanner has been doing well overall. He's had a couple of migraines over the last month, but, thankfully they've been controllable without any ER visits.

We're looking forward to school being finished in a week and a trip to Rockport, swimming lessons, "Beyond the Moon" day camp, a weekend at Texas School for the Deaf with other deaf children & their families, and sports camp at church - and that's just June!


Sunday, May 3, 2009

Tanner's New Bike

Tanner received new wheels for his bike from Aunt Nece & Uncle Steele for his birthday. Jon attached them to the bike we bought him a few weeks ago & then built a new trailer for Tanner to haul things around. Here's my first video editing attempt to show off the new bike! Tanner is LOVING it!

(To avoid conflicting music - scroll down to the music on the right sidebar and press pause)
video

Friday, May 1, 2009

2 years ago....

Two years ago today we were in the courthouse for Tanner's adoption! To celebrate we will be going out to dinner (Tanner's choice: sushi) and watching the adoption video. What a joyous occasion! We love to talk about Tanner's adoption and how he became part of our family. It's such a beautiful picture of becoming a part of God's family!

We're going to have a fun weekend filled with parties. Tonight we'll celebrate his adoption, tomorrow is Tanner's birthday party, and then Monday is his 8th birthday! It's so great to celebrate Tanner.

So many changes have occurred over the last 2 years (including him growing several inches!) Some are wonderful, some are sad, but, they are all memories that have happened together as a family.

Today I kissed an angel. I knew it from the start.
The first time my angel smiled at me; I gave away my heart.

Today I kissed an angel; this angel child of mine
Though not of my creation, My child by God's design.

Today I kissed an angel; My heart is dancing wild;
Our family, by a miracle; Blessed by our angel child.
Brenda Meece

Wednesday, April 8, 2009

Bikes, Bluebonnets & Bloody noses

Don't worry, despite the title, there are no graphic pictures involved.

Here are several pictures of Tanner's new bikes. The red one is his new bike that we bought a couple of weeks ago. Jon added training wheels to it, but, Tanner is still having a hard time riding it (he can't balance it well and his reaction time is too slow to catch himself before falling). Jon's working on some ideas for bigger training wheels. Then, last weekend we were at Jon's parents celebrating family birthdays, where Tanner had fun riding cousin Tyler's bike. So now, Tyler is letting Tanner borrow his bike for a while. He loves riding it every day and enjoys loading sticks, rocks, flowers (aka weeds), and more into the trailer.
We made it out while the bluebonnets were still blooming this year! Tanner liked it for a few minutes until he realized there were stickers (aka prickers) in the grass! Hattie didn't like them either & needed to be carried (yes, she's a little spoiled!)


On to the bloody noses (don't worry - no pictures here!) Tanner has started up with chronic nose bleeds again, so, he's scheduled for a surgical procedure this Friday (April 10th) to cauterize some blood vessels that are too close to the surface. Hopefully he'll recover quickly and can be distracted by the circus on Friday night!

We've recently decided to take a break from occupational and physical therapy. Though we miss our therapists and friends there, it's so great to be able to be home every day after school for the first time in 4 years!! I think this will be a good break for Tanner to be able to come home and play, do homework, go to the library, etc. We'll have him re-evaluated again in a couple of months and see if there's been any change and decide where to go from there.

It's been a little over a year since Tanner's leukodystrophy diagnosis. Throughout the year we've seen some regression, including the chronic & worsening headaches & migraines (which seem to be better controlled right now with an added medication! He's had no migraines for 3 weeks, yeah!!), and, some progression in other areas. We're so thankful that he doesn't seem to be having too much cognitive decline!

Spring and Easter time are such a beautiful time of the year to remind us about new life. We were recently working on our yard and I realized we didn't do much yard work last year because of our focus on Tanner's situation. This spring, we're cleaning up old leaves and things from the last 2 years, it's a lot more work, but the end result is a beautiful yard where we can enjoy beautiful creation. It kind of feels like our lives too, things are dark and dreary, but, underneath there's new growth that's green and turning into something new! Despite the dark times, there are also bright times as well, that show new growth that come only because of what has been there covering it for the past year. I think that God has been using Tanner's situation to help us appreciate life so much more. This spring, it's nice to be able to be a little less focused on the disease, and more focused on spending time together, enjoying each other, laughing more, playing more and learning to love each other better!

This is, of course, not the year we had planned nor expected, but, it's truly been a good year. A lot of good memories, new experiences, and more lessons in learning how to depend daily on the only truly dependable One!

Happy Easter! He is risen!

Friday, March 27, 2009

Bonaire!

We had a fabulous spring break on the island of Bonaire. What an amazing and memorable week. Along with us on the trip were, Kyle and Audra, Kyle's parents Bill and Janet, and our friends and dive experts, Tammie and Tracy.

We stayed at a beautiful resort that Tanner had figured out in no time. He knew where everything was and walked around like he owned the place. He made friends with everyone there, including all the animals! He liked waving and signing hello to all the iguanas, hermit crabs, birds, crab and fish. He enjoyed knowing where to go, who was staying where, and leading us all around.

We saw amazing and beautiful things while scuba diving and Tanner had a great time with Bill and Janet while we were diving every morning. Tanner absolutely loved snorkeling and seeing all the beautiful fish and coral.

Tanner behaved so well all week. We couldn't have asked for him to be any better! We were so thankful that he didn't have any migraines (he had one the night before we left which reassured us that he probably wouldn't have one while we were gone).

One of Tanner's favorite activities was watching the cruise ships come and go every day. He never tired of watching them and loved explaining how the ropes came out, hooked up to shore and how they pulled the ropes in again to leave every evening.

The Walsh's and Tanner visited a group of people with disabilities one day. There were many crafts that they made, and Tanner was convinced he needed a painting of "the sunset, the ocean and the sand." There's a picture below of him with the lady that painted the picture. He is so proud of it, he carried it with him everywhere!

Well, I could go on and on, but, the pictures say it better! Here are a just a few!


Wednesday, March 4, 2009

Waiting

Wow - it's already March! We've had a busy few weeks that included a marriage retreat for parents of adoptive children and a visit from our friend Charity (pictures are of Charity's visit). We had a great time with her here and Tanner was very disappointed when she left (in fact, he woke up at 4am the night after she left and signed that he missed her and wanted her to come back). The trip was too short, but, memorable.

One evening this week Tanner was in the dining room while Jon was at a meeting and I was in the kitchen. He came to get me and urgently told me to follow him, then banged on the window and was signing "look outside, look! The sky is pink, the sunset in the sky!" He was thrilled to be looking at the sunset and we went outside and enjoyed the sunset together! The next morning he was just as excited to enjoy the beautiful sunrise. What a great reminder from Tanner to be thankful and enjoy things that we often don't even think twice about!

In less than 2 weeks it will be spring break and we will be enjoying a trip to Bonaire! Tanner is excited to use his new passport and go to a different country. We are going with friends and looking forward to seeing the Caribbean both from on top and underneath - while scuba diving! We're excited to go somewhere new and experience it with Tanner (he's not old enough to dive yet, but maybe snorkeling :)).

Tanner has continued having migraines. Two weeks ago we ended up in the ER because his vomiting from the migraine wouldn't stop. They were able to give him IV meds to stop the vomiting and the headache. Last week the neurologist added a new medicine that will hopefully help.

I've heard the song "While I'm Waiting" by John Waller a lot on the radio lately (from the movie Fireproof). I hear it and often think of Tanner and that it feels like we're always waiting. Waiting for answers (that may never come), waiting for him to feel better, waiting to see if he gets worse, and so on. The song reminds me to worship, and through the pain and waiting, continue to be focusing on our Creator and remember that He knows and is with us while we are waiting. It also reminds me that I don't need to just be waiting, but, enjoying what we have while we're waiting. In case you haven't heard it, here are the words from the song:
I'm waiting
I'm waiting on You, Lord
And I am hopeful
I'm waiting on You, Lord
Though it is painful
But patiently, I will wait

I will move ahead, bold and confident
Takeing every step in obedience
While I'm waiting
I will serve You
While I'm waiting
I will worship
While I'm waiting
I will not faint
I'll be running the race
Even while I wait

I'm waiting
I'm waiting on You, Lord
And I am peaceful
I'm waiting on You, Lord
Though it's not easy
But faithfully, I will wait
Yes, I will wait
I will serve You while I'm waiting
I will worship while I'm waiting
I will serve You while I'm waiting
I will worship while I'm waiting
I will serve you while I'm waiting
I will worship while I'm waiting on You, Lord

Wednesday, February 11, 2009

Health Update

Our latest update isn't the greatest one. Tanner's headaches have been getting worse. The migraines seem to occur much more often. He of course is an amazing boy and still rarely complains. He wants to do everything and doesn't let the pain stop him. Today, he didn't want to go to school and that told us a lot, he NEVER wants to miss school.

At this point no one really has any answers and there's not much we can do. It's of course, very difficult to watch him suffer and we wish there was more we could do. It makes us fearful for the future, but, we are so thankful for such a strong little boy, because he tolerates things so well, it helps us continue to go on.

Thank you for your love and prayers. We rest in remembering II Cor. 12:9 " 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."

Sunday, January 25, 2009

4 years ago....

Four years ago today, our lives changed forever! We were home in the early afternoon waiting impatiently. We were waiting for CPS to come and bring 2 children to our home. Two children we'd never met, one we couldn't communicate with, and they were going to be left at our home for us to care for! We were anxious, excited and scared! Then soon enough, Alexis and Tanner were here, Tanner came in with no shoes (because he kept taking them off in the car). Alexis would turn 5 the next week and Tanner was 3.5. We showed them their room, and whenever we would look at Tanner he would sign "I Love You" because that's one of the only signs he knew and he used it whenever he thought he would be in trouble! Less than 2 hours later the caseworkers left and there we were with 2 children!!

We never imagined that they would both stay for almost two years, nor did we ever dream that one of them would become our son! What a change the last 4 years have brought! Many blessings, fears, sadness, uncertainty and mostly more love than we could have ever thought possible!

What a mighty God we serve!

Here are a couple of pictures from that day.

Friday, January 23, 2009

The frozen tundra.....aka a visit to Michigan

We are back home from a great trip to Michigan. We went for a late Christmas celebration with my family and a 90th birthday party for my Grandma DeKorne. We had a restful time and enjoyed spending time together. We played the Wii, played outside (a little bit, but, not too long since the highs were about 20 degrees!), had Christmas and mostly had fun being together. Tanner loved being with his cousins. We were also able to see my dad sing at a concert (with the Calvin College Alumni Choir), which was a real treat.

Tanner is doing ok. He's had a little trouble with headaches again this week at school. He gets weepy and grumpy but always keeps going! We talked to the neurologist just before we left and we've increased his medicine again, so, hopefully that will start working in the next month or so.

Here are a few pictures from our trip.
Tanner with me & my Grandpa DeKorne

"the girls" celebrating Grandma DeKorne's 90th birthday
(me, my mom, grandma, Kristi & Julie)

Ryan, Matt, Lilly & TannerTanner and great-Grandpa Lenger laughing together when the chair fell over!a visit with my grandma & grandpa Lenger