Tuesday, December 23, 2008

The Bethlehem Candle

I've been a little negligent in posting during these busy weeks of the holiday season. We have a lot of fun pictures (school play, skating with Santa, making Christmas cookies, building a Gingerbread house, etc.), that I will post after Christmas (they're on the computer at home and we're in Whitney at Jon's parents).

Tanner has had a several migraines again over the last several weeks. The medication seems to help them be not as severe, but, they still keep occurring. We saw the geneticist again recently and he has no more answers at this time, but, is continuing to do more testing.

The advent candle that was lit this past Sunday was the Bethlehem candle that symbolizes Peace. I've thought about that the last couple of days and have been so thankful to the Lord for the peace that He has brought us both through His son's birth, and also the peace He gives us with Tanner's diagnosis. Despite the pain and struggles and unknown, we truly do have peace. We are so thankful that we can have this special time to celebrate our Savior's birth! We hope you have a wonderful, joy-filled Christmas!

Wednesday, December 10, 2008

Our Little Snow Angel

Can you believe we had snow in College Station today? It started with sleet and a few snowflakes this morning and then snowed quite a bit more this afternoon! Tanner was excited and signed - same as Michigan! He made a snow angel and a small snowman and then wanted to have a snowball fight, but, Mom is not as much fun as Dad. Jon is currently in San Diego for a conference and is missing out on all the fun, he would've thrown snowballs with Tanner. I just told him he could throw them at the car and I would take pictures (nice huh?). The two of us had a relaxing afternoon together; enjoying a fire, playing in the snow, finishing up some Christmas decorating and drinking hot chocolate. I also added a picture of Tanner, Hattie and Ody enjoying their advent story. Tanner is loving the daily advent stories and learning more about the true meaning of Christmas. What a joy it is to see him learning that Christmas is not all about Santa and gifts and what it's really all about. Though, it's also fun seeing him talk about Santa and the reindeer landing on the roof, coming down the chimney, leaving gifts & taking off again. If you ask him where Santa is right now, he's working at the mall :)

Tanner continues to have his daily, chronic headaches, but, hasn't had any migraines for over a week. We're happy about that, but, disappointed the daily headaches are continuing. A few days ago Tanner was really energetic, playful, and happy and we realized that he didn't have a headache that day! We thought that maybe the medicine was starting to work, but, the next day he was more lethargic and less perky. It was sad to realize how much this affects him. We haven't seen him feel that good in a while and so it's easy to forget what he was like before the headaches. It's hard to see him hurting and then realizing how much it affects his everyday life. You could continue praying for these headaches to subside so that Tanner can be more like a normal little boy again!

Tomorrow night (12/11) Tanner will be in the annual deaf Christmas play at school. He's excited to be the forest ranger and has been performing his part during practice professionally and taking it very seriously - it's so adorable. We're looking forward to a fun weekend of ice skating with Santa and attending a deaf Christmas play at a deaf church in Houston before Jon comes home on Monday. We're definitely having a fun-filled and busy holiday season! We hope that yours is enjoyable and restful as well.

Tuesday, December 2, 2008

A Terrific Thanksgiving

We hope you had as nice a Thanksgiving as we did! We had a fun weekend with my parents here. On Wednesday we met some of Jon's family at the zoo in Waco. On Thursday we enjoyed a nice Thanksgiving dinner and games with my parents and our friends the Boysen's. Besides visiting Santa's Wonderland and being entertained by the hayride to see the Christmas lights, we also had a memorable time cutting down our Christmas tree. My Dad thought it was interesting to be cutting down a tree in the midst of cactus with no snow (though it was chilly that day, so it sort of felt like winter.) Tanner loved picking out a tree and wanted to cut down the first tree he saw (actually, he wanted to stop and cut down all Christmas trees that he saw - even on the side of the highway :)) but, he was patient and waited until mom found one she liked better.

On the health front, Tanner has continued having headaches. They seem to be occurring daily, he often wakes up with a headache and usually goes to sleep with one as well. We saw the neurologist today and are increasing his medication again. Hopefully this will help decrease the migraines, but, he's not sure it will help the daily chronic headaches. This is hard. We hate to see him suffering and not being able to do anything to help. The verse that was chosen for Tanner's dedication at church is an encouraging one.
"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go." Joshua 1:9
Cousins at the zooGrandpa & Grandma Lenger with Tanner (bison in the background)

Tanner and Great-Grandma Heberta warm Thanksgiving afternoon

a fun hayride through Santa's Wonderland

This is the one!

Tanner's rendition of the tree farm, the tractor and hay ride

Christmas 2008!

Monday, November 24, 2008

ASL Stories and Teaching Dogs Math

Tanner is doing some better, but, didn't feel great this weekend. Friday evening he wasn't himself, but still enjoyed our trip to Waco to see Peter Cook, a deaf storyteller. Here are a few pictures from the evening. Tanner was able to participate in one of the stories with several other kids about a boy at the dentist. He loved being a part of it and was not shy at all. You can see from the last picture that he wasn't feeling great.
Tanner had another migraine yesterday (Sunday) & had a rough afternoon. Later, we were able to get a little work done on math, and Tanner decided Ody needed to learn about tens and ones as well!

We are looking forward to Thanksgiving, Shelly's parents are coming in from Michigan Tuesday night and Tanner has been counting down the days! In case we don't update before then, we hope you have a wonderful Thanksgiving!

Tuesday, November 18, 2008

More pictures & More prayer

I've finally added more family pictures! It's hard to pick our favorites....but, here are a few more. There are still more that I'll add later.

Thank you for your continued prayers for our family and for Tanner. We have truly felt them. A friend commented recently we looked happy in the family pictures and prayed that was true. Well, God is faithful and it is true! It's sometimes surprising how happy we can be despite what is happening with Tanner and with many others around us, but, I have truly felt joyful recently. I believe that is only from the Lord! It's not always this way, but, thankfully it has been recently.

We would appreciate your continued prayers. Tanner's migraines (which the neurologist believes are separate from the chronic daily headaches and have also continued to occur) have started getting worse. His migraines involve nausea, vomiting, and pain. He had one Friday night and is home from school today with another. Normally the migraines are in the evening and have been pretty well controlled with medication, this is the first time he's had one during the day.

I was happy today that we recently hooked up the new digital converter (yes, we still have an antenna!!) because we now get 3 channels instead of 2 and Tanner enjoyed watching Clifford on PBS this morning (our "new" channel - woohoo!) He's been sleeping on and off this afternoon and is a bit weepy as well, poor guy!

I've been so grateful and at peace today. I'm sad for Tanner and wishing he wasn't miserable, wishing I could do more to take away his pain, but, loving being able to be home and take care of him. What a real blessing! I've had this verse of the Ross King song "You Alone Can Satisfy" running through my head today:

There's no fortune or pleasure, That this world can provide
They have failed and they always will, You alone can satisfy.
You're the Treasure that I've found, You're the meaning of life
You're my deepest desires fulfilled, You alone can satisfy.

I think this is a big reason for my gratefulness and peace today!
We hope you enjoy the pictures!

Monday, November 10, 2008

Future Coach?

A couple weeks ago we went to a high school football game and watched an exciting win! Tanner loves to go to the games. Afterwards, our friend Kyle Walsh, took Tanner into the fieldhouse to see some of the players. Here is Tanner's friend Patrick, Tanner, Alex, and Coach Walsh. Tanner was SO proud :)
Working out like the players!

Sunday, November 9, 2008

Family Pictures

Last weekend, our friend and amazing photographer and cinematographer, Igor Kraguljac, took family pictures for us.

Here are a few.....

More to come later!

Tuesday, November 4, 2008

Geneticist Visit

Thank you so much for your prayers for our visit today. It was a good visit. We didn't get the answers that I was expecting today (though I knew that my expectations were high, I was still disappointed), but, we will hopefully get some answers when we return in December.

The doctor was very thorough and attentive and would like to find us a definitive answer to exactly what type of white matter disease that Tanner has. One thing we wanted to happen was for all of the MRI's to be compared to each other. What a blessing, he will be sending them to a specialist in Amsterdam that is knowledgeable in leukodystrophy to review them. He is also running one additional test at this time (another kind of white matter disease) that was not previously done.

We feel very comfortable with him and the plans to evaluate the MRI's and then go from there. We had a nice day together as a family and enjoyed some good fishing back home this evening. It was an exciting day for Tanner since he finally lost his top tooth (he's been working on it for a while). Jon and I were discussing at dinner how Tanner probably thinks that it's normal to go see different doctors all the time - we're a little tired of the trips, but, it doesn't seem to bother him, thankfully.

Thanks again for your love and support for our family!

Sunday, November 2, 2008

The Week In Pictures

Tanner and Matt showing off their pumpkins!

Tanner's idea of a haircut (as a self-stylist)

Mom's idea of a haircut.

You can see how much Tanner enjoys getting his hands dirty! Here he's enjoying the pumpkin carving at school!

Do you like my pumpkin?

A contemplative doctor - waiting in line to go trick-or-treating at the George Bush Presidential Library

Our little astronaut at the space exhibit.

Enjoying an exciting high school football game!

Monday, October 27, 2008

Fun with friends!

This past weekend we all had a great time staying with our friend Matt while his parents and sister went out of town. Tanner was sad and disappointed to come home again last night because he was missing Matt. They had a great time playing together, watching movies, singing, dancing, playing pool, celebrating Matt's birthday, and more! They also had fun Sunday afternoon attending our neighborhood Halloween hay ride!

And now for a health update....Tanner's headaches are ok - they're not constant and severe, but, still occurring. He doesn't want to admit when he has a headache because he's afraid he'll miss out on something! We have an appointment next week with a geneticist in Galveston. He does research on a specific kind of leukodystrophy, so, we're hoping that he'll be able to answer some questions and give us more information about some of Tanner's symptoms. We would appreciate your prayers for that appointment!

The doctors

After lunch at the lake we are ready for the hayride (and of course the candy!)

Monday, October 13, 2008

Spelling Practice & A Day at the Farm

This past Friday Tanner was excited that he and I were planning to go see a high school football game (while Jon was in Dallas at a conference). When he arrived home from school I reminded him that if he wanted to see the game he would need to take a nap. There's no specific sign for nap so we tell him it will be a short sleep and then spell N-A-P. He grudgingly walked to his room while informing me that he preferred to be outside, watch a movie, read books, and more! Once he was in bed I reminded him when his N-A-P is finished we would go to the football game. He adamantly signed back "I want P-L-A-Y" (spelling play instead of using the sign.) At least he's learning to spell!

We ended up not making it to the football game as Tanner developed a migraine when he woke up. Later than night we went to the ER when he couldn't stop vomiting and he couldn't keep down any medicine to help with the pain. They gave him IV meds that helped with the headache, stopped the vomiting and allowed him to finally fall asleep. We're hoping that's related to both medications being at low doses.

On Saturday, Tanner felt much better and was up and ready to go early in the morning. So, our friend Audra, Tanner and I went to Dewberry Farm for some fall fun! Tanner had fun with the duck races, swinging, a corn maze, racing pedal cars, picking out a pumpkin and more! Here are a few pictures of our fun day!

Wednesday, October 8, 2008

The Next Step

Well, I've finally gotten around to updating about Tanner's appointment last week!

We went to the neurologist and he has decided to change Tanner's medication. We are happy about this and hoping this will resolve some of the behavioral issues we've been seeing with Tanner. We are decreasing the old medicine and increasing the new one, by the end of next week he should be fully off of the one and completely on the other. We are encouraged by this change and hope this will help resolve the headaches (which have still occurred intermittently) and the behavior.

We have been reassured by this change in medicine, but, are a bit anxious to see results.

My book club just finished reading and discussing a book by Max Lucado "He Still Moves Stones." Finally, by the last night (my apologies to Max that it took the whole book) I recognized something that has been helpful the last few days. Each chapter refers to someone that Jesus helped: Jairus (when his daughter had died then was raised from the dead), demon posessed people, the woman who had been sick for 12 years, a paralyzed man and many others. What I realized was not how amazing the miracles were (though they are) and not how he helped or healed these people (though He did), but, how he met them all where they were at, in the depth of their struggles. He went to these people to help them, not to the rich, the healthy or the whole, but, to all of those who no one wanted to be around! How great is that?!!

This has been reassuring as I worry about whether Tanner's behavior will improve with the medicine or whether it will continue because it's related to the leukodystrophy. It continues to be reassuring as I worry about whether he'll be able to control himself or if there's something different we need to try to help him learn. And it is comforting as I worry about whether my pride is getting in the way of helping him deal with frustrations and feelings that he can't explain. Throughout all of it Jesus is here! On the good days when all seems right with the world, and on the not-so-good days when life feels hopeless and we don't know what to do, He is right here struggling right along side! What a reason to rejoice today!

Sunday, September 28, 2008

Recent Struggles

Well, we are back home and still reminiscing often of our amazing Colorado trip! It's hard for Tanner to understand that at home we have responsibilities and things to do other than spend all of our waking time playing together :).

We have noticed some new behaviors the last couple of weeks that are frustrating and a little bit concerning for us. It's hard to actually describe, but his attention, his responses and reactions are not normal for him. He becomes easily agitated, he's more aggressive and has complained often of his stomach hurting. He's also much more tired than he used to be. These all could be side effects from the medication, or they could also be from the leukodystrophy which, unfortunately, no one will be able to tell us clearly either way.

We have an appointment this Thursday (Oct. 2nd) with the pediatric neurologist in Temple. We're hoping that he'll have some new ideas or recommendations. We hate to stop and start a new medication again because it's typically a drawn out process to decrease one medication while starting a new medication and could result in more headaches while waiting to see if the medication will work (and whether the other medication was actually the problem in the first place). We also hate to try another medication that could have other side effects!

We're also concerned of course that possibly no medications will help the headaches and that it's a result of the leukodystrophy. The positive side to this would be we could stop some of the medications and get rid of any side effects, but would hate to see him struggling with the headaches again.

Overall he seems to be doing well educationally at school and still enjoys it immensely! He is enjoying being able to play outside again now that cooler weather has arrived.

We would appreciate your continued prayers for us to be patient and loving despite his behavior (that is sometimes SO difficult to do!), also for the doctor to hear and listen to our concerns & have some new ideas to try, and most importantly for Tanner's pain to dissipate and him to be able to feel better emotionally as well as physically!

Thank you for your continued concern for our family.

Monday, September 15, 2008

Ike's Welcome Home

We have arrived safely home from Colorado with no damage except a few tree limbs from Hurricane Ike. We are extremely blessed that we still have power, water and can get fuel with very little trouble (for now).

We had a spectacular and memorable time in Estes Park, Colorado. Without television or internet access (it was absolutely blissful), we didn't even realize there was a hurricane headed our way until Wednesday (a big thanks to all our friends who helped tie things down!)

Our week was phenomenal. We spent time hiking, driving up the mountain, playing games, drinking coffee and hot chocolate in front of a nightly fire, enjoying the wildlife (chipmunks, ground squirrels, marmots, elk, birds) reading, and more. Tanner became a junior ranger by completing a booklet about Rocky Mountain National Park (and has loved telling anyone who was willing to pay attention). We also enjoyed an afternoon of snow in the mountains! The main road over the mountain was shut down due to the snow, but, we drove up to where it was closed and Tanner was thrilled to have a snow ball fight with Jon. One of Tanner's favorite things was watching the glassblowers, we went back 3 times! I could go on and on, but don't want to bore you.

It was a truly restful and beautiful week. One of our favorite things was Tanner's joy and genuine thankfulness for the beauty and creation that we experienced. He would notice something and sign "Thank you, thank you for the beautiful mountain Jesus!" and then he'd want us to do the same. Another time, "thank you Jesus for the elk" and did he this all week long! It was such a precious thing to see.

Our last morning there we were packing up the truck to leave, and in the front of the cabin we saw a herd of 40-50 elk! It was a clear morning with an amazing view of the mountains and we were surrounded by these majestic animals. What a beautiful parting gift from our Father. We are truly blessed to have had this week together that was absolutely unforgettable!

I've tried (it was hard) to pick out some of the best pictures to show you here. Enjoy!

Friday, September 5, 2008

We'll be coming 'round the Mountain.....

We are headed out to Estes Park, Colorado this morning! We are anticipating a relaxing, rest-filled, week of being together as a family and creating memories in a new place! We are so blessed to have this amazing opportunity. It was exciting to pull out sweatshirts, hats, gloves and jackets again, Tanner is happy about his new winter jacket (especially because we don't have a long season to wear it in Texas.)

Tanner is incredibly excited to be going to the mountains. He is ready to hike up the mountains (and then thinks he will slide down on the dirt.) He is also ready to see moose and bear (which, according to Tanner, are both very nice) and ride a bear up the mountain (hopefully he won't be too disappointed :)).

We look forward to telling you about the trip upon our return. Have a great week!

Saturday, August 30, 2008

A Memorable Day!!

This post is all about great news and greater news!

First of all, Tanner's headaches are improving! They are still occurring on and off, but, they're not constant anymore! Praise the Lord! Please join us in praying that the medication will continue working.

Secondly, the best news. We had a nice day playing, shopping, Tanner helped Jon repair a leaking shower and went swimming with his friend Matt. In the evening, I found Tanner reading books in his closet (one of his favorite morning activities :)) and told him it was time for dinner. He signed "I love Jesus. I want to pray to Jesus to live with me." I called Jon into the room and we sat together while Tanner copied Jon and prayed to ask Jesus into his heart! After praying Tanner clapped and was really excited, he said he was making music (by clapping) and we told him he was making music with the angels who were rejoicing that Jesus is now living in Tanner's heart. He was also thrilled that he will be going to heaven with Jesus.

What a joyful, memorable day!

Tuesday, August 26, 2008

Our 2nd Grader!

Here are a few pictures from Tanner's first day of 2nd grade. He was extremely excited to get on the bus and ready to see his friends again. He did well his first day and was proud of himself for not hurting anyone (as were we). He's also happy that he's able to go to school every day for a whole week.

Ready for the bus!
Enjoying an after school snack