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!

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!

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!)

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!

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!