Summer Update!

Well, it's been a busy summer so far! 
Before I even get to summer, I've been meaning to post an update from this past spring!  I've tried unsuccessfully to edit a short video clip, so, instead I'll just add some pictures.  In April we went to Isaiah's Place for the dedication of the new barn.  It was a wonderful weekend and especially memorable because the barn was named in honor of Tanner!   What a special time for us, and so fun to see the surprise on Tanner's face when he realized it was his name on the barn.

Another spring event was that Tanner completed the 3rd grade successfully and passed both the reading and math TAKS (Texas Assessment of Knowledge and Skills) tests!!!  This meant that he was able to start summer 2 weeks earlier than I had planned!  We were all somewhat surprised and also thrilled that he passed!

In June, we attended Family Weekend Retreat at the Texas School for the deaf where Tanner loved spending time with other deaf children. 

Also during June, Tanner completed 2 weeks of swimming lessons, loving every minute!  He was excited to complete the seahorse level this year and move up to the crocodiles next year. 

We've also enjoyed the summer reading program at the library, playing with friends, swimming and getting excited about summer trips! 

We just returned home from a trip to Cozumel, Mexico.  We went with several friends and my parents met us there as well.  Tanner loved spending time with Grandma while the rest of us went scuba diving.  I don't have all of the pictures downloaded yet, but, here's one for now.

We are looking forward to a few days at Isaiah's Place next week for ASL VBS.  It's very close to Jon's parents, so Tanner is excited to be able to spend some time with Grandpa and Grandma as well. 

The last week of July we are scheduled to go to Michigan to spend some time with my family at a cottage on Glen Lake.  We always look forward to this time of nice, Michigan weather, swimming, climbing the sand dunes, spending time with family, playing games and lots of rest.

Prior to the cottage, and after arriving in Michigan, we'll be driving down to the Cleveland Clinic (Cleveland, Ohio) to see a pediatric neurologist who specializes in headaches.  Tanner's neurologist has run out of options for treating his migraines and is hoping a fresh set of eyes can look at him from a different perspective and hopefully have some new ideas for treating Tanner.  We're excited that there may be some new options, and yet are trying not to get our hopes up too much. 

So, that's our summer through July. I'll try to keep up a little better throughout the rest of the summer.

Happy Birthday Tanner!

Today is Tanner's 9th birthday! It's hard to believe he's already 9! The other day he asked about his 1 year old birthday party. I explained we weren't with him for his birthdays when he was 1, 2, and 3, he didn't seem to mind. I told him I would show pictures of his birthdays with us, and decided to put them all here. I have some other posts to catch up on, but, I'll have to do that later - we're heading to Atami (Tanner's choice - sushi and Hibachi grill) for his birthday dinner.

This morning I was feeling a little sad about missing his first three birthdays, but, realized if we hadn't missed them, we never would have had Tanner to begin with! What a blessing that God chose us to be his second set of parents, we are so truly thankful!

4 years old!

5 years old!

6 years old!

7 years old!

8 years old!

9 years old!

Happy Birthday Tanner! What a special gift you are!

Spring is here!

A couple of weeks ago we were all excited to be able to plant our vegetable garden. Tanner loves watching the plants sprouting up and can't wait to eat all the fruit and vegetables!

Last week was spring break here in Texas. Jon had to work all week, but Tanner and I were able to enjoy a few days camping with some of his family at Dinosaur Valley State Park. Tanner had a great time riding his bike, visiting Dinosaur World, playing with cousins, playing at the playground, sitting by the fire and being outside!

Tanner's migraines have started again. He's had several over the last few weeks. We went to the pediatric neurosurgeon on Monday hoping for some resolutions to the headaches, but, the possibility the geneticist had considered did not turn out to be the case. So, unfortunately, we're back to having no new options for treating the headaches and migraines (except maybe starting over with the old medications or increasing the current one).

Tanner also had bloodwork last week that may identify new genetic disorders - this will probably take several weeks to hear the results. He's had a lot of testing in the past, but, this is a new test he hasn't had, so, we're hoping it can find something new.

This week, I took some pictures of the irises blooming in our yard. These irises are always in our yard, with the leaves a constant green, though the flowers are only blooming about two weeks out of the year. During the time they bloom, when I'm outside or drive into the driveway, it really cheers me up! They're so glorious and beautiful, a lovely gift from our Creator. I sometimes find myself disappointed that they'll be finished blooming so soon, even before they're actually gone! I realized that I need to enjoy the flowers while they're here, yet also appreciate the leaves and greenery even when there are no blooms. The plant still looks pretty and adds color all year long, and if I didn't know about the flowers, I would probably appreciate the plants so much more. But, knowing the flowers are coming, I don't enjoy the plants as I wish I would. The green plants look nice, but, compared to the flowers, I usually don't think twice about them!

Similarly, I want to appreciate Tanner for whatever he has now. When we hear that he's lost ground cognitively and educationally, it sometimes feels like he's finished "blooming," but I forget to look at the "plant" and appreciate his joyful spirit and overall happiness. When we see him becoming weaker, or his headaches/migraines worsening, it sometimes feels like the flower is almost gone, and I worry that it might not come back next year. I become easily frustrated when he can't do things that he used to do, and I don't want to be constantly waiting for the flowers, I want to be accepting and appreciate the beauty that's already there! I also want to enjoy the blooms whenever that happens and for however long it lasts!

As we're approaching Easter, and thinking about death and resurrection, we're so thankful for a Savior who died and rose again for all of us!

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.