Thursday, August 27, 2009

Melancholy Moment

I know this picture may be a little "off" because it is actually a picture of a picture. Strange, I know, but I wanted to share this sweet gift that a dear friend of mine sent to me just before we left for Mayo. It is a picture frame that says, "We are surrounded by miracles." The picture inside is of William several days after his CI surgery. Michael and I were removing his bandages while he was sleeping (great idea, Daddy).
I post this because it is nice to remember the miracles all around us. Michael and I have 9 beautiful miracles walking the earth, soon there will be 10. The gift of life is a wondrous miracle. The gift of eternal life is the ultimate miracle.
I am somewhat melancholy today, therefore I am sitting here reminding myself of all the things I am thankful for. I have been reading on the web, which has put me in this somewhat disheartened mood. Two things I've been reading about lately: 1) deaf people against CIs for anyone, and 2) a deaf-mute boy badly beaten up at school by 10 others. My post would be far too long to tell all that my heart holds at this time, but it is broken for this poor soul. I can't imagine my precious William having to face such a cruel world. How can even the most grievous of souls have absolutely no compassion? What thoughts must have been going through that poor boy's head? In what condition is his precious heart? Does he know that he is loved and cherished and important? Does he know that God has a purpose for his life? My heart is aching for this dear boy.
And for those against CIs, I understand the point that there is nothing "wrong" with a deaf person. I agree wholeheartedly. I cannot, however, agree with the idea that parents want to "force" a deaf child into a hearing world for their own comfort or convenience. Loving parents want to offer their children all of the best opportunities and joys. God has given man this wonderful ability to give sound in a silent world. Praise the LORD for His goodness! I am thankful to be able to give William this gift, this ability to hear all the beauty that God has created for him. And he has the added benefit of being able to turn it all off whenever he wants. Biologically we have changed nothing. He is still deaf and he is still wonderfully made.

"As Thou hast given Him power over all flesh, that He should give eternal life to as many as Thou hast given Him." John 17:2

Thursday, August 20, 2009

Giving and Receiving

"I have showed you all things, how that so laboring ye ought to support the weak, and to remember the words of the Lord Jesus, how He said, 'It is more blessed to give than to receive.'" Acts 20:35

We love to give. I think God put it in our nature as another way to take care of His people. It always feels good to know that you have been His instrument in helping someone in need. Also, we know from Scripture that God intends for us to be generous and willing to share what He has blessed us with. We see in Acts 2 that Christians had all things in common, sold their possessions, and distributed to all, as they had need. (Keep in mind, this was a voluntary act of love, not a socialist government control.) Then they continued daily in one accord, breaking bread together with gladness and singleness of heart, praising God and having favor with all people. Because of this giving, loving attitude, God was pleased to add to the church daily.
We also see in 1 John 3 that if we have worldy goods and see a brother in need, but turn our compassion away from him that the love of God does not dwell in us. Therefore I believe when God's love dwells in us, so does a love for giving. Giving is an easy, enjoyable thing to do.
What can be hard sometimes is being on the receiving end. How do we receive gifts when we know and realize that people are loving us and making large sacrifices because of that love. Even though we are very appreciative, it can be hard to receive the gift. It is definitely humbling! I say this because we have recently been on the receiving end of many gifts on William's behalf. We are definitely appreciative and overwhelmed with humility. Family members have been very generous to us, as well as individual friends. But I think what has touched me most is our church family. Now, I must tell you something about our church. We do not attend a large congregation. We attend a small gathering of 8 families - large families that love children. We do not collect a "tithe," but all giving decisions are made by the head of each home. We do believe in giving, but since we do not have debt and there is no need of a storehouse, each family gives at their own discretion. Now, I mentioned long ago that we rent a van to go on vacation. We've had many issues with our 1998 van and do not trust it on a long trip. This is a pretty sizeable expense. Our dear church family decided they did not want us to have to worry about this expense on our trip to Mayo, but wanted us to be free to focus on William and his needs. They collectively put in to rent our van for us, in full. This was a sacrifice of love. We have families that have been without AC this summer, vehicle trouble, water line troubles, appliance troubles, some that are self-employed in the midst of hard economic times, etc., yet they lovingly sacrificed to be able to give abundantly for William. What better exemplifies the love of Christ than dying to ourselves?
I tell this story for two reasons. One, to express our deep gratitude and love for the members of our church, and two, to appeal to each of you that if you do not already have one, find a church body to be a part of. If you are looking, keep in mind that church is not a place to go to hear a message that will make you "feel good." It should be a place where the whole truth of the Bible is preached, where change is brought about in our lives as we draw nearer to God, where we are loved in spite of our faults, and also held accountable to each other and challenging each other to live for the glory of God. May you be blessed to be part of the church of God.

"So we, being many, are one body in Christ, and every one members one of another." Romans 12:5

Wednesday, August 19, 2009


Mayo truly is a beautiful place. I know I won't do it justice, but here are some pictures we took while we were there:

Mayo/Gonda Building - Lobby
atrium garden
Someone was almost always singing here or playing music. This lady played "Amazing Grace" on the clarinet. Most of the time we heard someone at the piano they were playing hymns. We heard things like "How Great Thou Art," "Great is Thy Faithfulness," "Be Thou My Vision," "O For a Thousand Tongues to Sing," just to name a few. It was very calming.
The Subway

What they call the subway is what we would call a concourse. Except this one is remarkable! It is an underground tunnel that leads to several different buildings and hotels. Within the tunnel hallways are shops with clothing, jewelry, toys, etc., places to eat, pharmacies and medical supplies, etc.

Floor 16 - Pediatrics
The children's floor is less than 2 years old. It is amazing how they have everything set up.
Pediatric Lobby
One of the 4 corridors leading to rooms (Forest, Woodland, Wetlands, Grasslands)

Physical Therapy room

" Every man's work shall be made manifest: for the day shall declare it, because it shall be revealed by fire; and the fire shall try every man's work of what sort it is." 1 Corinthians 3:13

Sunday, August 16, 2009

Finished at Mayo

After a long week we have finished our appointments at Mayo. We feel that we've come away with some valuable information. We learned that his iron level is well within normal range and his iron stores are bordering on normal. Of course, we also learned that his vision is decreasing more rapidly than first thought. Among the many other things we learned, the most valuable part of the trip was probably physical therapy.
The therapist had him in a new walker that will have him rely on his legs more and quit using his arms and upper body as a brace. We have to get it ordered and pick it up when we get home, which could take 2-4 weeks. He will also be getting leg braces ordered.

She also had him using a compression vest, which is helpful to children with ataxia. The short, easy explanation is that it supports their upper body muscles so they don't have to concentrate on two major areas at once and it frees them up to focus on lower body muscles.
She showed me some great, easy strengthening exercises that we can do at home on the exercise ball. Our biggest challenge when we get home will be finding a facility that can do pediatric PT and OT, that has extensive knowledge with equipment and can use it with him properly.
After the hematology consult and blood pressure test we saw Dr. Brands again. He felt like we are doing all the right things with our doctors at home and, should we decide to pursue testing, we should pursue the neurological and genetic sides from home. He also felt that if nothing comes from those two areas and we decide to press on, we should return to Mayo to pursue mitochondrial issues. We are still in the discussing and deciding stages. We'll see...
And now we're off for some sight seeing. I'll post some great pictures of Mayo when we get home.

"For thou art my rock and my fortress; therefore for thy name's sake lead me, and guide me." Psalm 31:3

Friday, August 14, 2009

William at the Waterpark

One of the many great things about the hotel we are staying in is the waterpark. The children are having such a great time! We've taken at least a little time each day to swim, though some days have been so busy they've only gotten half an hour. However, Wednesday was our short day. We were free all day after lunch, so we stayed at the waterpark all day and into the evening. We got in bed pretty late, but I think the children all agree it was well worth it!

William has so much fun in the water! He loved the "big" waterslide in the adult pool and he had fun in the kiddie pool on the "little" slide, too! And, as you can see, he had a great time playing water basketball with Michael! He loved making the ball go in the net and we all loved watching him be so proud of himself!

I'm thankful that this trip hasn't been all testing, but we've been able to enjoy the time with our children, too!

"Let the heavens be glad, and let the earth rejoice: and let men say among the nations, The LORD reigneth." I Chronicles 16:31

Thursday, August 13, 2009

Life at Mayo

Dr. Driscoll (Physical Medicine and Rehabilitation) and Dr. Lindor (Genetics)

More labs

It's been incredibly busy here at Mayo. William has had some very early mornings, fasting, but he's done great! I think he is starting to tire of the the whole routine, though. When we walked into Mayo this morning, he started crying. He did calm down and was able to complete his round of appointments today.
Basically, we've learned nothing so far. Just lots of consultations, history, examining, and testing. Dr. Kotagal, the neurologist, has some specific testing he wants to run, but it can't be done until next week. We are checking with our neurologist at home to try to run this battery of tests there instead of staying 5 more nights for one day of testing. He also really wants an MRI done and when we told him that could not be done without removing the CI magnets from his head, he insisted there is a way. He is checking with a colleague to find out how to do it, but I called William's surgeon back home who advised us NOT to try an MRI without removing the magnets first. It is just too risky. He said to give the neurologist his cell number if he persists.
Tomorrow is our last round of appointments. We should find out the majority of the test results. We see PT first thing. Dr. Driscoll prescribed some braces for William that we will have to get when we get home. She also wanted us to see PT tomorrow to explore the possibility of a different walker. She gave us some very specific instructions for PT and OT to start as soon as we can find therapists capable of her instructions.
We may not have a diagnosis when we leave, but I feel that we do have some valuable information and direction that will help William. Now we just need to find the kind of therapy at home that he needs.

"Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD." Psalm 27:14

Tuesday, August 11, 2009

Quick Update

Dr. Brands - Pediatric consultation

Time is flying by already! There has been so much to do, but it seems to be going well for the most part. Yesterday we had our consult and discussed everything that has happened over the past year and a half and where to do from here. Dr. Brands is not interested in doing any surgery on William to remove the titanium from his implants and agreed that that would be best left to his CI surgeon if an MRI is necessary.
They gave us our schedule for the week. William had a great time in the wide hallways running his walker around.

This morning he had another EEG done. Everything went great! He went to sleep as desired and did not have to be sedated. Thank you all for the prayers!
(Elly,Wallace, and me waiting for William to come out of the EEG with Michael)

After the EEG we went to the Pediatric Ophthalmology department. After the initial visit, they dilated his eyes and he had a great time playing in the waiting room while waiting for the dilation to kick in.
Dr. Mohney examined William and was very concerned about his progressive vision loss. It is even worse now than it was 2 months ago. Dr. Mohney called in a retinal specialist and they examined William together, then discussed some of the many diseases that could be a cause.
William's eyes seem to be the biggest concern right now. They were in agreement that it is highly unusual for a child to deteriorate as rapidly as we are seeing with William. The vision in his right eye has dropped from -3.50 to -5.00 in just 3 more months. The left eye only had a -.50 change, but is still dropping.
Every doctor we've seen has asked us about an MRI. Dr. Edwards felt like INAD is still a huge possibility, even with the blood test, which he shrugged off as "unstable."
We were able to make it back to the hotel for a brief crockpot lunch. Now we are off for a full afternoon of appointments. I'll update more later.
Prayer for tomorrow: more fasting beginning 7:00pm tonight, water only in the morning, labs at 8:00am.
"The LORD will perfect that which concerneth me: thy mercy, O LORD, endureth forever: forsake not the works of thine own hands." Psalm 138:8