Sunday, May 31, 2009

5 and 5

We have 5 more treatments to go here in North Carolina and in 5 days we'll be home in Iowa. Seth finished up the sound therapy portion of the treatments on Friday. I'm hoping that as we get further away from this therapy he will become less squealy. Since the beginning of week 2 of sound therapy he has been extremely loud in his shrieking. I'm hoping it's a sign that the therapy has had an impact on his brain and he's exploring sound anew - unfortunately that exploration is very hard on his mama's ears - hey Mike - pack the earplugs for the drive home!

Some other small changes I've seen this week include Seth learning to buckle his own seat belt and Seth pointing with his index finger. In the past he has always "pointed" with his ring finger and not really very purposefully. Yesterday during a dive he pointed with his index finger at a water bottle and then signed "drink". This morning as we were waking up he pointed at the window and then we played a game of pointing at different things in the bedroom. These are not the changes I'd hoped to see, but maybe they are the start of bigger things to come.

Today we had a full day of exploring North Carolina with good weather. We drove the Blue Ridge Parkway south from Boone and enjoyed the beautiful mountain views, drove over the portion of the parkway called the Linnville Viaduct, hiked up to Linnville Falls, then took a long drive south to Asheville and looped around back home through Boone. The miles and miles of majestic scenery is really amazing.

Seth was not happy with mom for making him hike the half mile up to look at Linnville Falls - (picture above). He did okay until we got right up by the falls - not sure if it was too for him or what. I can promise you though that Seth is feeling better after that hike than mom - boy howdy do my knees hurt - I'm getting so old.

Above is a picture of Grandfather Mountain - the 2 small peaks in the background. And see that little line between the peaks - that's a pedestrian bridge. We didn't brave this trek - even without Seth my fear of heights would not allow me to do this.

Just 2 more days and Mike will be here to wrap up this journey with me. I'm so thankful for a supportive husband, family and friends who have prayed us through this trip. I'm so looking forward to getting home and enjoyed a couple weeks of normalcy before we take off another trip - AHHH!!! We're headed out to Colorado for our summer reunion, then onto Utah for some family time together before spending the 4th of July weekend with extended family in Nebraska. Even though I'm sure I'll be sick of the driving I am looking forward to all the time together with my whole family.

Wednesday, May 27, 2009

So Happy to Be Almost Done

We have 7 more days here in NC, 6 more days of treatments and I'm having flashbacks to emotions I felt at the end of my pregnancies. Many moms can probably remember those feelings - wanting to be done with this part of journey and ready to move onto the next part; feeling very uncomfortable (my current discomfort is more mental than physical), and wondering if life will ever feel "normal" again.

I am so ready to be done with the treatments - to get back home to my whole family and try to enjoy the rest of the summer. We still have yet to see any major or even minor improvements with Seth and I'm having a hard time keeping the hope alive at this point. My focus right now is more on just keeping my sanity for the remainder of our time here and getting home to my real life.

The first week of treatment Seth was very tired and consequently, calm after treatments each day. Week 2 his energy started to return and now in week 3 he's a wild man with a lot of energy and seemingly stuck on his vocal stimms (a sound that is what I would imagine a pterodactyl dinosaur making - a piercing shriek of a sound). This pattern of vocalization is particular hard to deal with in small living quarters when outside play is limited because of terrain and rain.

All the families seem to be experiencing similar stress and all are very eager to get this finished. The honeymoon, if there was one is definitely over. Last night while talking to Mike he was saying something about "if we ever do this again...." and I just winced at the thought. Many kids do benefit by repeat sessions, but I just can't go there right now.

My prayers over the last few days have been focused on perseverance. I am feeling worn down and lonely for my family and friends, although I am very thankful for the technologies that have helped me to stay connected while here - can't imagine the experience without that. I am so thankful for the many saints who are lifting me in prayer and know that God's answers to their prayers for strength and peace have carried me through this journey. I pray God will give you the perseverance to walk through whatever journey He has placed before you.

"Therefore, since we are surrounded
by such a great cloud of witnesses,

let us throw off everything that hinders
and the sin that so easily entangles,

and let us run with perseverance
the race marked out for us.

us fix our eyes on Jesus,
the author and
perfecter of our faith.."

Hebrews 12:1-2a

Thursday, May 21, 2009


Tomorrow morning will mark halfway through our treatment session here in North Carolina. I wish I could report that I'm seeing amazing changes in Seth already, but so far nothing major. He seems to be a bit more flexible in his play patterns and daily living and his receptive language seems to be growing stronger. As I continue to read and talk with the staff here I'm learning that we may see gains even 6 to 9 months after the treatments here. This therapy provides greater oxygen flow to the brain and enables the brain to build new neural pathways - but it can take time for the brain to learn to utilize those new pathways.

Being confined in a small space not only with Seth but with 2 other autistic boys and their parents for 4 hours a day is proving to be interesting. There are definitely strong opinions on how to treat kids with autism and unfortunately a lot of judgement by some parents toward others for not doing enough or not doing the right things. I am learning the importance of remembering that most of us are doing the very best we can as parents - whether we have kids with disabilities or not and that what works for one child doesn't always work for another. The last thing we need in the autism community is parents attacking other parents - we need to band together and support one another.

I continued to praise the Lord for the blessing of my roommate here at the center. Elena is an encouragement and joy to be around. Please pray for her also as she's been having high blood pressure and has not been able to go into the chamber with her son during treatments the last few days (fortunately he's high functioning enough he can go in alone). Tonight we are looking forward to enjoying a wonderful Cuban meal that Elena made for all the families.

As we reach the halfway point I am trying to keep the hope alive. I am feeling a bit discouraged by the lack of observable gains, by the interpersonal tension with some of the parents here, and generally fatigued by all the travel and being away from home. I resolve to continue to place my hope and trust in the Lord.

"I call on you, O God, for you will answer me;
give ear to me and hear my prayer.
Show the wonder of your great love,
you who save by your right hand
those who take refuge in you from their foes.
Keep me as the apple of your eye;
hide me in the shadow of your wings."
Psalm 17:6-8

May God Bless You All!!

Monday, May 18, 2009

A Day of Sightseeing

On Sunday Seth and I went on an exploration together around northwest North Carolina. On our drive to Boone we saw some beautiful countryside including this barn and church.

We visited the Mast General Store in Valle Crucis - right outside Boone. This is the original store - there are now 10 or 15 locations in North Carolina and Tennessee. This store opened in 1874.

On the back porch entrance of the Mast Store there was a group of musicians picking bluegrass music. We enjoyed listening to the music.
Here's the view of the store from the back, where there is additional parking and a beautiful view of the valley the store is located in.
Seth was so excited to see the MANY candy barrels in the store and went around and picked out the candies that he knew he could eat.
The store had a wonderful selection of toys both new and old - Seth found a bus and sports car that he really liked and we found some surprises for Bella and Luke too!

At the end of our outing we drove along the Blue Ridge Parkway for a little while. Unfortunately it was rainy, cloudy, and cold. We'll have to take another drive on another day when the weather is nicer.

Friday, May 15, 2009


Restored - Cheri Keaggy

I've been living against the grindstone
Where nothing is sure but the Lord
For He gives me the treasures of darkness
Where faith's greatest riches are stored
And in ways that are quite unexpected
I have learned a most humbling truth
That a faith that has never been tested
Is just growth that is long overdue.

So I'm practicing joy, choosing it daily,
putting it on like a favorite cologne.
And when life breaks me down it won't even faze me.
Some call me crazy but I'm just in love with the Lord.
For He has been faithful, and not just to fill me
To take me to heights I have never explored.
If I'm never broken, how can I be restored?

So I'm trading these comfortable choices,
for living that's much more alive.
And the more that my spirit rejoices,
the more that I grow and I thrive.
If surrender is seen as a weakness,
then the lowliest beggar I'll be.
I'll embrace every struggle with meekness
cause I know that it is making me free.

Restore me, Lord and make me new again.
I want nothing more than to soar.

On my drive to North Carolina I came across this song. God has really been using it to minister to my soul and teach me. Ever since I arrived I've had this song running through my head. There are many truths found in this song that are striking me afresh as I've meditated on these lyrics.

There are great treasures to be found in the journeys of darkness in our lives if we will allow God to mold us and teach us through the process. I pray that my faith has been strengthened and will continue to grow through the trials in my life. I wish there were an easier way - that I could become the mature, godly woman desires me to be without struggles and sorrows, but it seems this is the way that God best shapes us into the person He knows we are capable of being.

In the midst of life's trials it is very easy to become overwhelmed and loose our joy if we are focused solely on our circumstances. But when I choose to focus on God's love, grace and mercy toward me I can choose joy - knowing that the trials we face are temporary in light of eternity and are meant to strengthen our faith.

"In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed."
1 Peter 1:6-7

I am so thankful to know that the trials of life will only be with us for a little while. But our faith that is proved and strengthened through these trials will last forever - even longer than gold - all to the glory of God.

As I've gotten to know the other families here at the center I've been struck by how we are all seeking physical restoration for our children through hyperbaric and various others interventions. We are earnestly seeking this restoration. I too am pleading with the Lord for a restoration of Seth's physical health - mind and body. But God has also been speaking to my soul about the importance of continuing to seek soul restoration. I want to focus each day on growing in my spiritual health - my soul is eternal - praise the Lord we will all have new physical or heavenly bodies in heaven. I am so thankful that as a believer in Jesus Christ I can rest assured that I will see Seth's physical body restored in heaven even if I don't see the complete restoration here on earth.

So I continue to pray for restoration - for all the physical ailments of my son and the other children here at the center while I also focus on restoring my soul daily by spending time with the Lord in prayer and Bible study.

Thursday, May 14, 2009

Treatment Tutorial

Here's a photo of the hyperbaric chamber that we are "diving" in at Children's Hyperbaric Center in Creston, NC. Seth, since day 2, is excited to climb into the chamber. The ring he has around his neck is part of the hood he wears to deliver oxygen to him during the dive. Maximum capacity of the chamber is 8 people - 4 clients along with their 4 caregivers. Fortunately we only have 6 in our group for this session for we have a little more room to spread out - but just a little. If you're claustrophobic - you would not like this experience.

Once Seth is in the chamber he sits in a chair that swivels, which he finds entertaining. As you can see in the photo above, he's excited to be in the chamber.

Hunter, age 9, sits next to Seth during each treatment. They get along well next to each other. Seth is reaching out to touch a small tv screen that plays videos during our sessions. Hunter's dad and I try to work with the boys during the session on imitation and socialization skills. I sit on the floor in front of Seth during the treatment. The other child and his mom sit on the other end of the chamber, where I'm taking the picture from. Along with working with boys, the adults have been chatting quite a bit, getting to know one another and sharing all we've done with our boys. All 3 boys in my group have autism. The blue tubing on the right is hooked up to the oxygen valves. After we pressurize the chamber - which takes about 10 minutes we put on the hoods, hook up the oxygen tubing and turn on the oxygen. Then the boys breath 100% oxygen for an hour at 1.5 ATA.

Here's Seth with his hood on. Once we pressurize the blue tubes are hooked up to the bottom front of the the ring around his neck and the hood inflates a bit more fully. He tolerates the hood well, but still tries to bang his head a bit. So far the hood seems fairly resilient.

Hope these pics and explanation give you a better feel for what we are doing. Thanks again for all your prayers.

Wednesday, May 13, 2009

Montage in the Mountains

This is the treatment center. Small, but set up very nicely. The staff has been wonderful with the kids - Seth seems to have taken a liking to James and Sharon especially.

Here's pic of our housing unit (yes it's a trailer circa 1974), but it's a roof over our heads and is right across the road from the treatment center. I was thrilled to see a washer and dryer in the unit - going to the laundromat would not have been much fun!!

Our front porch is a wonderful place to sit and enjoy the fresh mountain air and beautiful mountain views.

Seth's happy in most any environment if he has his legos - too bad we can't take them into the chamber!!

Hope you enjoyed this snapshots - I'll post more over the coming days!

Tuesday, May 12, 2009

Whirlwind Couple Days

It has been a whirlwind couple of days since arriving at the treatment center. Monday morning we had our first dive and Seth did not do well. He was having pain in his left ear and was very scared by the hood he had to wear. He cried off and on through the entire hour and a half session and gooberd snot all over the inside of his hood - good thing they clean those and have individual hoods for each child. Alice, the treatment center director, took a closer look at his ears after the session and said his left ear was full of wax. She encouraged me to take him to an ENT and have it cleaned out. She made us the appointment and we went down to Boone (25 miles - but a 50 minute drive - love the beauty of the mountains - don't love the driving so much) and had a very nice doc clean out his ear.

This morning we got back in the chamber for our 2nd dive and had a completely different experience - in a positive way. Seth did not cry at all during the entire dive - he watched his favorite DVD - Math Circus, and sat peacefully for the duration of the hour and half treatment. PTL, PTL, PTL!!! Thanks to all for your prayers - God answered them in a big way today.

The Lord has been so sweet to me through this whole journey. He's brought parent after parent into my life through the Internet, through friends of friends, and now here at the center who are sharing their stories of hope and healing and coming alongside and encouraging me to stay the course and know that we will find the right treatments to bring Seth healing. Even though this journey with Seth has been long and hard - I have been so blessed to make so many new, dear friends who have ministered to my soul and encouraged me, along with the many old friends and family in my life who have been committed prayer warriors for our family. I could not have made it this far down this road without all of you - thank you is not nearly enough to say to express my gratitude to all these people and ultimately to the Lord for bringing them into my life.

During my many hours in the van on the drive down I had some wonderful times of prayer and worship where God ministered to my heart and again affirmed to me that I can dare to hope again. I am believing for a miracle in my little boy's life. That's such a scary thing, I am crying as I write this because I want to believe God is going to work through this intervention and yet there is a part of my soul that is so weary from the many times interventions have not showed any significant progress. But I have to believe that all we have done has brought underlying healing to Seth to prepare him for the next treatment and the next, to bring us to this point.

I've come to a realization through this particular course of treatment that I don't think I'll ever be able to say that I'm done with new treatments at least until I see some measure of healing in Seth's life. It's just part of who I am - I will always be looking for the next promising treatment that could help him - just as I am pursuing excellence and healing in the rest of my life, whether it be in how I feed my family, how I relate in relationships, how I carry out ministry, how I interact with residents at work, and the list goes on. God wired me to be always looking forward and striving for the best in life. At times I've viewed this wiring as a struggle with contentment, but God is teaching me to be content with where I'm at and yet pursue the next thing He places before me. I only pray to stay on the path that God has for me and not go off on my own side journeys.

"Sing joyfully to the Lord, you righteous;
it is fitting for the upright to praise him.
Praise the Lord with the harp;
make music to him on the ten-stringed lyre.
Sing to him a new song; play skillfully, and shout for joy...
the eyes of the Lord are on those who fear him,
on those whose hope is in his unfailing love,
to deliver them from death and keep them alive in famine.
We wait in hope for the Lord; he is our help and our shield.
In him our hearts rejoice, for we trust in his holy name.
May your unfailing love rest upon us, O Lord,
even as we put our hope in you."
Psalm 33:1-3, 18-22

Blessings to you all!!

Sunday, May 10, 2009

We've Arrived!!

We finished our journey to North Carolina today, arriving at the treatment center at about 5 pm. The trip out went very smoothly - thanks to all for your prayers. Seth did great in the van and adjusted to our numerous stops without major problems. It has been a lot of new places in a short amount of time for him. I expect that this first week may be the toughest with him as he processes all these changes.

We are in a rural mountain area. The drive to the treatment center today was beautiful with lush, green mountains, burbling streams with some mini rapids, and sections of roller-coast like roads. Bella & Luke would have really enjoyed those roller-coaster like road sections. The nearest grocery store is about 20 minutes away in West Jefferson, which is a smaller community. Boone is about 40 minutes away with more shopping choices including an organic foods grocery. Tonight I decided to stay put and get settled in our housing unit - we'll have to make a grocery run tomorrow. We stopped at Whole Foods (love that place) yesterday so we've got enough to get us through for a couple days.

Our housemates are Elena an JD, a mom and son who live in Maryville, TN. JD is 14 and fairly high-functioning with mainly social skills issues. He seems very sweet and his mom and I spent a couple hours already chatting and beginning to share our stories with each other. We are both chatty Kathys so I think we'll get along well.

The true adventure begins in the morning. Our first dive will be at about 7:30 am central time. I'm a bit nervous now that we're so close to beginning about how Seth will tolerate the treatments. But I am confident God has brought us this far and will carry us through the next step of this journey.

Thursday, May 7, 2009

The Preparations are Almost Completed

Most of the packing is done, apart from loading the van and one last trip to Wal-mart for a few last items needed. I'm sure there are many things I have not packed that I will wish I had, but it's just hard to know what all to bring for a month-long trip. I'm pretty convinced Seth does not have a clue of what is to come, but many are praying for us so I have a peace that things will go smoothly.

My excitement continues to grow as I hear from more and more people who have seen great results from this treatment. As many join us to pray for God's healing hand upon Seth during this intervention I am more hopeful than I have been in a long time. I am praying to experience the tree of life spoken of in Proverbs 13:12 - "Hope deferred makes the heart sick, but desire fulfilled is a tree of life."

Below is a list of specific prayer requests for our trip. Unfortunately I can't get the prayer card up on my blog - I will email it to the friends and family I have email addresses for. If you don't get one and would like me to email you one, please let me know.

Please pray for:

Travel mercies - Jenn & Seth will be traveling to and from NC on May 8th through the 10th and June 3rd and 4th.

Living Arrangement Transition - please pray that Seth will adjust to the new living quarters without major problems.

Treatment Toleration - please pray that Seth has no sinus or ear pain during pressurization and that he tolerates the hood (a clear large, clear bubble-like apparatus) that he will have to wear on his head during treatments.

Treatment Effectiveness - please pray Seth responds well to the treatment - pray God will work in a miraculous way!! The treatment session dates are May 11-June 2nd. He will receive treatments Mondays through Saturdays - Sunday is our only day off.

Thanks to all for your prayers and support. Next time you'll hear from us,we'll be in NC!!

Monday, May 4, 2009

An Interesting Week

It's going to be an interesting week leading up to our departure. The H1N1 flu has our country and our community in quite a craze. Marshalltown schools have closed for the week due to the flu scare. I'm not sure there have been any confirmed cases in our community yet - just 5 or 6 suspected cases. According to the CDC website as of 11 am EST this morning there is only 1 confirmed case in the state of Iowa and that case in the southern part of the state. I guess better safe than sorry.

Reports from health officials indicate that this "outbreak" is not showing itself to be as severe as they had initially thought it would be. Now they are saying that it will not be worse than the "normal" seasonal flu. I'm hoping it's mainly media hype. It's definitely interesting living in a community that is being affected by this.

Seth woke up with a fever this morning which is not a real comforting experience with all the talk about the flu outbreak. But it's not a high-grade fever and he doesn't have any of the other symptoms of the H1N1 flu, so I'm thinking he's just fighting a little bug. He laid on the couch for the first 3 hours after he got up, but is now up and playing in the family room. We'll be praying that he gets over whatever he's got quickly and is healthy for our trip.

Yesterday we were blessed by an outpouring of support from our church family. We shared with our congregation about the trip and asked them to join us in praying for a miracle in Seth's life through this treatment. We are so thankful for Christian family and friends who are joining us in our prayers for Seth. The family of God is such a tremendous blessing!

Here's praying for less excitement as the week progresses!

Friday, May 1, 2009

One Week and Counting

We leave for the big trip one week from today. I've started packing a few things, marked some of the things off my to-do list and added more things to all of my lists. I've been talking with the friends we're stopping to stay with and am excited to see some old friends along the way. It's such a blessing to have places to stay and generous friends who are willing to host us. The list of things remaining to get done is still long, but I'm feeling like it's more manageable as I begin working on it little by little.

Some friends have been shocked to find out that we are driving such a distance. There are several reasons for this decision. Seth has never flown and I didn't feel like taking on this first alone. Seth rides well in the van and with the entertainment system in the newer van we got last summer I think he'll deal with the trip very well. The treatment center is in a rural area and we will need a vehicle while we are there - renting a vehicle for 3 + weeks would be very costly. And with the generous friends mentioned above we won't have to drive longer than 8 hours in any day.

I'm still working on the prayer card I mentioned a while back and will post that over the weekend. Thanks to all for your support and prayers through this journey! Have a wonderful weekend - I'm going to enjoy my final weekend with the whole family and maybe even squeeze in a date with my hubby!