Monday, June 30, 2008

Big Ol' Six Year Old!

Yesterday was Anna Kate's 6th birthday. It's hard to believe that we've had 6 years with her already. Six amazing years. Here are 6 of my favorite things about Anna Kate:

1.) That laugh of hers. It is the best sound on earth. From the first time we heard it in the church office in Crane, we were hooked and have been doing silly things ever since just to hear it one more time.

2.) Her ever-optimistic little personality. For example, she saved up her money for months and finally decided she was ready to spend it. She had $6 and we headed for the toy store. She finally decided on this very affordable (read: cheap-o) doll that came with a brush, an extra outfit and some hair clips. We got home and she unwrapped it. She read the sticker on the box and says, "Made in, Momma. They make GREAT stuff over there!" Then she began to brush her baby's hair and the brush part pulled off of the handle and stayed in the baby's hair. "Look, Momma!! It comes apart! I love this brush."

3.) Her songs. She makes up songs all day everyday. Our personal favorite is her tornado song, which goes like this: "We were all playing outside one day and it was bright and sunny. Then along came a tornado! Oh, no. And we all died...but that's okay because now we're all in Heaven praising our King." Of course, it's set to a catchy tune. It's one of her greatest hits. Her dancing would also fit in this category. She literally spins everywhere she goes.

4.) Her inquisitiveness. Questions, lots and lots of questions. And not questions that I would have ever thought of. She asks things like, "Momma, what does it feel like to be a momma?" "Momma, where did all of these words that we speak come from? Who thought of them all?" "Momma, why doesn't that word have a silent 'e' at the end. It needs a silent 'e'." Everyday she asks something that stumps us.

5.) Her willingness to help our family everyday. Whether it's me needing help getting the house picked up or dinner ready, or Max needs help while they're playing with their friends, or Jake needs someone to play puzzles with or read with, she cheerfully (well, most of the time) helps as much as she can.

6.) Her affection. She is so affectionate. It shows in the way she snuggles up with us or the way she looks at the people she loves with absolute admiration. It shows in the way she cares for her babies or her big brother or her little brother. She voices affection for her sister that she doesn't remember and talks about her/grieves her openly. It's beautiful to see.

Yes, we're crazy about her. Those are just a few of the reasons why.

We had a little party for her yesterday. We invited the neighborhood kids over for cake and ice cream and some bicycle fun. (The party idea came straight out of Family Fun magazine so don't think I just dreamed all this up). Anna Kate and I made a fun bicycle cake together. At the party, each kid made a name plate for their handle bars and put "motors" on their wheels like we used to when we were kids. Chad made a huge obstacle course in our cul de sac and they had a ball doing the challenges and having races. We had bubble wands for party favors and we ended the evening with seven kids twirling and whirling to make the most bubbles they possibly could. It was simple and cheery and a fun way to ring in Big Six!

Max Man Update

So, I blogged about Max and his ears weeks ago and never updated. What a bum of a Momma. Thank you all for your emails and prayers. We are so blessed to have such amazing friends.

Our visit with Dr. Kopke went well. Here's a rundown of what we learned:

1. Max is definitely a candidate for cochlear implants. Everything is formed properly and Max is scheduled for surgery on October 1st. He is very sad that he has to wait such a long time but it is a great opportunity to teach about patience and the Lord's perfect timing.

2. The doctor says that Max has an enlarged vestibular aqueduct which is common in kids with this type of deafness. He says that this means Max possibly had hearing until around the age of two. If this is true it will certainly benefit Max as he "learns to hear" with his implant.

3. Max will need to see a retina specialist to rule out Usher's Syndrome. This syndrome affects hearing and eyesight.

4. He will also need to see a throat specialist. Max's glands are enlarged in his throat and Dr. Kopke is not sure why. He is sending us to one of his collegues to see if we can figure that one out. One possibility here is Pendred's Syndrome, which affects hearing and thyroid. (Understand that I have only done a small amount of research on Pendred's and Usher's and know very little about them.)

5. So far there is no explanation for the tongue weakness. This is most often caused by stroke or tumor and neither of those showed up on the MRI (and we are so grateful).

6. And finally, he talked about Max's balance problems. He showed us a diagram of a healthy ear and it looked something like this:

You can see all the parts of the inner and outer ear. You can see the snail shaped cochlea. Look just above the cochlea and you will see several blue loops (well, they are blue on the diagram anyway). These are your balance center. Next, Dr. Kopke showed us Max's MRI and pointed to where those loops should be on Max. Turns out he doesn't have any. They are missing. You can see the start and end of them, but the actual loops are missing. The doctor has never seen this and has no explanation for us. He is going to be doing some research and hopes to be able to explain it at our next visit. But it helped explain why Max is a bit awkward. The doctor said, "Fortunately, God created our bodies with more than one way of controlling balance." We are grateful that Max is able to do all of the stuff nine-year-olds like to do.

So, that's the rundown. Again, thanks for all of your prayers. The next few months hold lots more doctor visits and lots of adjustments for Max and our family. Please keep praying!

Monday, June 09, 2008

The Scoop

Most of you who read this blog know Max's story. You walked with our family through our adoption journey and encouraged us as we welcomed him into our family. In August we will have had him four years. It is hard to believe that he has been with us that long! Four years ago he got a Dad, a Mom, a little sister, grandparents, aunts, uncles, cousins, and friends. Four years ago he also got language. We have seen him go from an extremely frustrated 5 year old boy living in a quiet world with no way to communicate to a lively, communicative 9 year old, whose hands are always busy "speaking" American Sign Language.

When we adopted Max we were bombarded by...well, by everything. During the adoption process we did the best we could to prepare for what was ahead of us. We knew that we needed to make decisions about his education and language. Where would he go to school? Would our family use ASL or Signed Exact English? And what about cochlear Implants? If you have never heard of a cochlear implant, click here to read a little bit about them. For us, having never been around a deaf person, cochlear implants seemed like a no-brainer. I mean, why wouldn't we take him to the doctor and have a device implanted into his brain that could make him hear. Then he would be like us.

Then the research started. We were swept into a sea of varying opinions. Implants are very, very controversial. The doctors, of course, recommended that we have the surgery as soon as possible. But the people who we met through Max's school, other Deaf people, strongly advised against it. They talked about the impact this would have on Max as a person. They told us that he would be stuck in between worlds. He would no longer be a part of the Deaf Community. Cochlear implants are rejected strongly by the Deaf Community. He would not be accepted by them...but neither would he be a hearing person. He would lie somewhere in between the two worlds.

We considered both sides. We built a pro/con list. We prayed and deliberated and talked it to death. We finally decided against it. Our main reason for deciding against implants was the therapy involved. Max would have had to spend hours in therapy each week. The doctors told us that we would have to completely QUIT signing with Max to "teach" him to rely fully on his "ears". At that point we had only had Max about 6 months, which means Max had only had language for 6 months. We felt like he would have really resented us if we had taken his language away and put him back in his quiet world. So we laid the issue to rest.

Fast forward 3 years. Max has decided that he wants to revisit the issue. He wants implants. He decided while Chad was in Atlanta and the kids and I were staying at Sunfish (my parents' house). He told us that he wants to hear. He wants to hear the fish flop in the water and he wants to hear the four-wheeler when he rides. So...we are starting all over again. We have been researching and reading and talking to people about it all. Wow. We don't really know how to feel about it all. At this point we are trying to be as honest as we can with Max and with ourselves. This will not be a quick fix. It will not "cure" his deafness, and we don't want his deafness cured. It is part of what makes Max who he is. We don't want him to think that he will instantly hear just like we do. We want him to understand that this is a LONG process and it could end with him hearing as much as he does now. But we also want him to know that we care about him and what he desires. We want him to know that we support him and will help him in anyway we can.

So, here's the scoop. We had our first doctor visit about a month ago. We went to the Hough Ear Institute here in Oklahoma City. Max had several hours of hearing testing and then got to look at an actual implant and pick out what colors he wanted on his processor. He was very disappointed that he didn't get to take them home that day. Next, we went to see our Otolaryngologist, Dr. Kopke. He was wonderful. He was very, very thorough and examined Max well. He was interested in Max's history and possible causes for his deafness. We visited about Max's deafness quite a bit, but we also visited about some other things. Max has terrible eyesight. He also has balance problems, which we always assumed were a result of the deafness. Dr. Kopke also pointed out that Max has tongue weakness. When he sticks out his tongue it goes to the right. All of these things (deafness, bad eyesight, balance problems and tongue weakness) can sometimes indicate some type of neurological disorder. The doctor ordered a CAT-Scan and MRI, which we had done last week. These tests will tell us several things. One, they will tell the doctor if everything in Max's inner ear is formed correctly. Everything must be formed correctly for the implant to fit in his ear. Two, it will tell the doctor if there is anything more significant going on neurologically. We are very eager to know what the doctor finds in both of those areas.

Our appointment is in the morning at 8:30. By the time most of you read this post we will probably be done. Will you please pray for our family as we go through this process. It could be that we go see Dr. Kopke in the morning and he tells us that it is physically impossible for Max to get the implants. In that case, Max would be terribly disappointed. It could be that we go tomorrow and schedule the surgery. If Max does end up getting the implants there will be lots of adjustments for all of us. It will be a long, hard journey. Of course, we will write about the journey here and keep you posted on what is going on. If you have questions about any of this or have any wisdom to share, please comment or send me an email.

(And I must say this: There's always a chance that some sort of Google search led you to this post and you don't know Max or our family. If you have something rude or discouraging to say about our decision to pursue cochlear implants, please keep it to yourself. We are done with trying to be politically correct or culturally accepted. We are, above all, Max's parents. You may not agree with our decision, but please respect us and our right to decide.)
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Thursday, June 05, 2008

Confessions of an Uptight Momma

Okay, here it is. I hate kid paint. Hate it. I am wound far too tight to enjoy letting my kids paint. It's ridiculous, I know, but I'm controlling and weird like that. BUT--I acknowledge it and I'm working on it. I mean, really, what kind of Mom won't let her kids paint (or play playdoh or use glitter or, or, or...) just because of the mess that results?

Well, I've been working at "getting over it". I must get over it. Do I really want our kids to grow up and remember how Momma never let them paint? So yesterday morning when Anna Kate told me she wanted to paint here's what I did:
1.)I told her yes! She was so excited. I told her that we would paint later in the day. This gave me time to mentally prepare myself.
2.)I preached to myself and prepared myself that there would, indeed, be a mess. A big mess. I told myself that it would be okay. Messes clean up.
3.) I prepared for the mess. I put a plastic table cloth down. I put paint smocks on the kids and got out lots of wash clothes for them to wipe their little paint-y hands on.
4.) I sat down and painted with them. I figured that, if I was involved in a project of my own, I would be less likely to notice the mess going on around me.
5.) I timed myself on the clean-up. This is my favorite trick. If there is a task that I dislike or put off (like emptying the dishwasher, watering the houseplants, etc.) I get out my timer and see how long it actually takes me from start to finish. Do you know how long it took me to completely clean up the paint mess? Three and a half minutes. Really. I stuck the paint plate and utensils in the dishwasher. Took of the smocks, wiped down the kids, wadded the tablecloth, smocks and wash rags up and put it all in the washer. Then I wiped down the chairs and cabinets that Jake had run his fingers down. And it was done. Over. Completely cleaned up in 3 1/2 minutes. I spent way more than 3 1/2 minutes dreading the painting.

And we had a blast. We painted picture after picture after picture. Here are a few shots from our day:

Monday, June 02, 2008

Summertime Toes

It's Summertime. It's the time of year when we run barefoot everywhere. Shoes? No way.
All summer we subject our feet to abuse--hot sidewalks, sticker patches, tree trunks and, worst of all, we stump them on the sidewalk. Ouch.
This happened to Anna Kate a few weeks ago. I heard her crying in the back yard. I found her sitting on the back porch cradling her toe in one hand and holding a little piece of skin in the other. It was so sad. When I told my Dad about it on the phone, he sent Anna Kate this sweet email.

Dear Anna Kate,

When your Mommy told me about you stumping your toe it made me sad. The reason it made me sad is because when I was a little boy I stumped my toe and I remember how it hurt and how sore it was for about a week. So, I am sorry about your toe------ I wrote you a poem about your toe:

AK's Toe ---by Papa Joe

A little girl I know

stumped her big toe

and you might know

it hurt her so

and now you know

about her toe

That's all--Papa Joe

I love you little princess, hope you get to felling better---tell Max and Jake and Mommy and Daddy Hi ----Papa