Wednesday, April 29, 2009

Getting Overwhelmed - 9 Days until Departure

The lists are growing longer and longer. I have a list of things I need to get done before I leave, a list of things I need to pack, a list of therapy and homeschooling activities to do on the trip. Lists, lists, lists. I'm starting to feel more than a little overwhelmed by all I need to get done before I leave. I'm sure there are many things I have left off the lists too - aaahhh!! "Do the next thing" is the phrase that keeps coming to mind. One thing at a time and it will all get done, or all that has to get done will get done. Some things on my lists may not get accomplished like making freezer meals for Mike to help him feed the kids while I'm gone - sorry Mike! Many from church have so generously offered to help while I'm gone, which I know will be a tremendous blessing to our family.

Mike's biggest challenge while I'm gone will be getting Bella ready for dance pictures - which of course are the day after I leave - couldn't have been the day before I leave :( I think he'll need help with hair and makeup - it stresses me out getting her ready for pictures. I know that it will all happen - people will help out and she'll have her pictures taken. I know that overall Mike will do a great job while I'm gone. I'm sure there are many times when we'll miss each other and that we both will have a new appreciation for all the other does in the life of our family. I will miss his regular help with Seth, how he is always there to jump in when there's a meltdown to help stabilize the situation. I will miss watching the sweet moments between Seth and his dad and siblings that take place on a daily basis.

We continue to pray that this time apart and the many sacrifices required to make this happen will result in much progress and growth in Seth's life. Lord - please bring healing to our little boy!

Monday, April 27, 2009

Expecting a Miracle

God continually amazes me. This weekend the message my pastor preached seemed to be tailor-made for me. I'm sure it spoke to many people in our congregation, but I was so touched by how specifically it ministered to my heart in the midst of my life at this time. Our pastor has been preaching a series on the heroes of faith from Hebrews 11. This week we looked at the story of Jericho and the life of Rahab who is listed among the heroes of faith in Hebrews.

Jericho was an extremely well fortified city. The walls of this seemingly impenetrable city were wide and high and the army guarding this city well trained and with many weapons. Jericho stood on the top of a hill which added to the difficulty of 'stormin' this particular castle'. As I listened to this description of Jericho I thought of the seemingly impenetrable walls of autism that seem so wide and so high in my life. I thought of all we have done to try to break down those walls with little success to date.

The method by which God instructed the Israelites to overtake the city was more than a little unorthodox for the time. Marching around the city 13 times over 7 days, shouting and blowing horns were not standard tactics of battle. In many ways the tactics we have approached our battle with autism have not been the standard tactics either. We have fought for educational interventions that are considered extreme by professionals in our state. We have employed biomedical interventions that are very much outside of the mainstream. And our next leg of the journey may be the most unorthodox and radical of all - leaving my home and rest of my family to go and have hyperbaric oxygen therapy. To many I may seem like a complete lunatic in relation to all I have done to help Seth. But I pray I am only following the direction God has given me. All along the way I have asked the Lord to guide my steps and show me what direction to take next. It's nice to know that God has some unorthodox, peculiar plans as is evidenced by His instructions to the Israelites on how overtake Jericho.

As our pastor continued he said, "God specializes in the miraculous!!" I felt the emotion welling up in me and had to hold back tears as our pastor went on. He challenged us to expect God to move miraculously whatever formidable walls of Jericho we are facing in our lives. And then he honestly admitted that sometimes he questions whether he has the faith to believe for miracles. I too question whether I have that kind of faith. I hesitate to ask for the miraculous for fear of the disappointment that comes when God doesn't answer my prayers in the way I had hoped. And yet I know that He will answer and work out His perfect plan in my life. A plan that will be better than the one I could have dreamed up.

In the midst of expecting miracles, he challenged us to first and foremost seek the presence of God in our lives. I have felt such a heavy burden over the past few weeks to seek God and to surround this trip and intervention with Seth in prayer. Even more than a miracle in my son's life I want God's evident presence in the midst of my days. And yet even today as I continue to seek God's presence He brought me a story of a friend of a friend whose son has made great progress after doing hyperbaric oxygen therapy. I earnestly hope God is affirming the path He has put me on and I pray He is preparing me for a miracle in my son's life. I will be careful to give Him the glory no matter what.

Friday, April 24, 2009

Stories of Hope

I have been blessed to come across many stories over the past couple weeks of kiddos who have responded very favorably to hyperbaric therapy. Just this week I found out about a family right here in central Iowa who just returned from a hyperbaric session and have seen very positive changes in their autistic son. Many of the stories I've come across seem to follow a similar theme. After receiving the autism diagnosis parents pursue numerous intensive treatments and see some gains, but nothing major. Then after hyperbaric they finally see the major changes they have been hoping for. It seems that the hyperbaric oxygen therapy even helps to maximize the effectiveness of other therapies that children were already receiving. And from the stories I've read the gains received from hyperbaric oxygen therapy are maintained over the long haul.

One parent I have emailed with sent me these links to videos on you-tube of their son and before and after video. I was especially intrigued by this child because in his before video he shows some similarities to Seth. The changes are dramatic. Take a look!!
Ian before hbot -
Ian after hbot -
Obviously this is just one kiddo and his individual response. But it's exciting to see what the possibilities are.

I am working on a prayer card for Seth that I will post here soon with specific prayer requests for the trip. I will continue to post updated requests as time goes by. I have felt impressed by the Lord to ask for a concerted prayer effort on Seth's behalf for this treatment. I believe that Seth will benefit most from this treatment along with focused prayer on his behalf. God is the ultimate healer and I ask that you join us in praying for God's healing hand on Seth through this time. Our departure date is 2 weeks from today and preparations are coming together for the trip. Thank you for your support and prayers!

Tuesday, April 21, 2009

Praying for Peace & Joy

As we continue to make the physical preparations for our trip I have been grappling with some spiritual and emotional preparations as well. Although I believe this treatment to be effective and know that it has helped many people, I have been guarding my own emotions. I don't want to get my hopes up too much and then have to deal with the crash if we don't see progress. But when I peel back those protective layers of my heart I am hoping for great progress, even a miracle in my little boy's life.

As I was studying the Bible this morning I was reading the story of Hannah in the first part of the book of 1 Samuel. Hannah was a barren woman living in a time when women who could not have children were considered failures. This was a great burden on her. In 1 Samuel 1:10 it says she was greatly distressed and cried out to the Lord and wept bitterly. Many of us have areas in our lives that feel barren - areas that we cry out to God about and weep over. I have felt much barrenness in the area of bringing healing to Seth and have often felt like a failure when our best efforts and fervent prayers have yielded little success.

As I continued to look at the life of Hannah I saw how her barrenness had brought great sorrow to her life. In the midst of a great sorrow like Hannah's it's easy for bitterness to take root. It's easy to ask "why me?" Why do I have to carry this burden? Lord, why does not seem you are listening to my cries? Why are others seeing blessing in this very area, but we see none? It's easy to get so wrapped up in the problem that you see very little else. Ultimately Hannah did what we all need to do with these great burdens. Hannah laid them at Lord's feet. She expressed her deepest longing and her pain and then she allowed the peace and joy of God to fill her. She embraced that peace and joy even before she received the answer to her prayers.

This is where I find myself today. Falling at the feet of the Lord - praying for a miracle, and then praying to receive peace and joy that can only come from the Lord - no matter what the outcome may be.

Thursday, April 16, 2009

Beginning Trip Preparations

Earlier this week we received confirmation that Seth has a spot in the May session at the treatment center in North Carolina. So I am beginning to make plans to be gone for almost a month. It's a little overwhelming to think of all I need to do before I leave to make sure things go smoothly here and all that I need to pack to prepare Seth and I to be gone for a month. Fortunately my hubby is a total prince who can pretty much handle the homefront. He can manage a number of easy meals - although the older kids have already commented that they are excited to get to eat "junk" food more often. I may have to ban frozen pizza and hotdogs for a couple months after I get back just to try to offset any negative health consequences :) Mike already does most of the laundry for our family so he should be able to keep them all clothed and fed. If the house is less than clean while I'm gone - it really won't be anything out of the ordinary!

I'm making lists of things to get done before I leave and things to pack. One of the biggest challenges is finding 100% cotton clothing that does not have zippers or velcro. This is the clothing requirement for us while in the hyperbaric chamber. Shirts are fairly easy - t-shirts will do the trick. Pants are another story. I've already spent several hours looking at Goodwill and on E-bay for such clothing. I've found a few things cheap, but it's going to be a challenge. I'm also trying to start making mental notes of how much food Seth goes through each week as I don't know that we will have access to a store that stocks Seth-safe foods while we are there. There is a Whole Foods about 2 hours away if I can't find anything closer we may be taking road trips on Sundays when Seth does not have treatments.

Some friends offered to loan me a laptop, which will be a huge blessing. It will be great to be able to use Skype to talk with family and friends and keep in touch with friends through Facebook and email. And I plan to blog on a regular basis - hopefully with amazing stories of the progress Seth is making. Another friend loaned me her french press to keep me set on good coffee - I had seriously considered taking my 12-cup coffee maker along to ensure I have good coffee during our stay - I am serious about my coffee! I'll be buying several bags of coffee beans from the local roaster I love to take along.

I've been trying to figure out if there is some way to prepare Seth for the trip. But I'm not sure how to really go about that. Fortunately he does very well in the car, so that part of the journey will be okay. Once we arrive in North Carolina I think it will only take him a day or two to settle in, as long a we have his favorite things along. I do think he will miss his siblings the most. He has started to play more with them over the past 6 months and I think he will miss having them around.

The preparations have just begun!!

Tuesday, April 14, 2009

A Good Report

Yesterday I took Luke to Iowa City for his annual cochlear implant check-up. It has now been 8 years since Luke received his cochlear implant and he continues to make gains and show improvements. Over the past few years Luke has began to look forward to his annual visits to Iowa City. He enjoys getting to see the staff and is excited to take the tests and eat in the fun cafeteria where he can choose whatever he wants to eat for lunch. Yesterday he informed the audiologist he was working with in the morning that he likes a challenge when taking sound recognition tests. He improved on his scores from last year - something that is a little out of the ordinary this long after implantation. The audiologist said many kids have plateaued at this point so we were excited to see continued growth. Luke also scored very well on a number of problem solving tests - it was fun to watch the "gears" of his brain work. Throughout the day Luke was his typical jovial self and inspired many laughs among the staff as they worked with him. His exuberant personality brings life and joy to those around him - what a blessing.

In talking with one of the audiologist I learned that bilateral implantation (both ears), is now pretty much the standard for young children that are implanted. Some children that received one implant as toddlers are now having their 2nd ear implants also and see gains in listening in loud environments and greater ability to localize sound. Mike and I have been hesitant to pursue this for a number of reasons to this point - Mike thinks that further advances may come in Luke's lifetime that would be of greater benefit than the cochlear implant, we have been a bit leery of putting him through another surgery when he's doing so well already and Seth's struggle with autism has taken more of our focus over the last 5 years. But I had to ask myself on the drive home yesterday if we are shortchanging Luke in any way by not pursuing this opportunity. It is something Mike and I want to pray and talk about further.

But overall we are so pleased with how well Luke has utilized his cochlear implant. He now takes responsibility and great care of his device. The first thing he grabs in the morning is his CI - he wants to hear all that's going on in the world around him - he doesn't want to miss a thing. When the batteries die he now goes the cupboard with the batteries and changes them on his own. Sometimes I find it hard to believe that he's this grown up. He continues to excel in school. He truly loves to learn and functions beautifully in a gen ed classroom with some minimal supports. We have been blessed by the many caring teachers and special educators at his school who have been a great support and encouragement to him in his school experience. At home he is a typical, high-energy boy who loves to play soccer, ride his bike and skateboard, play x-box, and pick on his sister. I am so thankful for the opportunity the CI has given him to be a part of the hearing world. Praise the Lord for modern technology!!

Saturday, April 11, 2009

New Leg of the Journey

It's hard to believe that it's almost the middle of April. We are slowly seeing signs of spring here in Iowa, although the weather has been colder than normal for this time of year. It's been a long and at times challenging winter. We continue on the journey of seeking healing for Seth, a journey that has seemed to be moving at a snail's pace. We continue with many educational and medical interventions but the progress is very slow. Over the past few weeks God has opened the doors to a new treatment for Seth. On May 8th Seth and I will be leaving on a treatment adventure to North Carolina. After stopping and staying with two friends along the way we will arrive at the treatment center on Sunday, May 10th and start treatment on May 11th. Seth will be receiving hyperbaric oxygen therapy along with auditory integration therapy and a specialized physical therapy treatment.

Recent studies have shown promising outcomes for children with autism with the use of hyperbaric oxygen therapy through increasing blood flow to areas of the brain, decreasing inflammation in the body, and aiding in detoxifying the body. We are hopeful this will be a treatment that will bring Seth further healing. I approach this new leg of the journey with mixed feelings. I have a hard time remembering my life before this journey began. We have already completed many legs of the journey as we have pursued various interventions including educational, nutritional, and a variety of biomedical therapies. I had hoped that a leg of this duration and length would not have been necessary. I had hoped that the previous legs of the journey would have brought greater healing to our precious boy. I had even said at one point that the last leg of our journey would be the end. But the progress that we'd hoped for has not been seen and so I push on to find new treatments that might help our boy.

I don't know where this journey will next lead us or when or if the journey will ever come to end. I only know that I don't feel at peace with ending the journey yet. Stay tuned for more posts about our preparations for the trip and updates on Seth's progress throughout the treatment session.