Daniel's Facebook Status

Dan Pfohl: please pray for me that I will be able to fall on god and understand why he has put such a terrible thing in my life. Pray that I can use it for good things, insted of just feeling sad about it all the time. And pray for my parents, our whole family is stressed and breaking down. Thank you.

Thanks for your prayers for Daniel and all of us. Brenda had a good chat with him last night.

"Do you know what?"

This is a question David asks almost 30-50 times an hour. Unfortunately there is no answer! We try to guess what he wants to say but we have had no luck. Sometimes it is a conversation filler, other times he is just frustrated with his inability to communicate or understand the conversation around him. He will often repeat the last part of a sentence in an attempt to enter into the conversation but often he gets it a little mixed up. Today someone ended their sentence with something to do with chicken broth and David says, "I wear a bra!" (Broth/bra, I know it is a huge stretch but it makes total sense to David.) Other fillers are, "I'm pregnant!" or "I'm going to get married." or "I'm drunk." If all else fails he flashes his big white belly and smiles.

Today was a quiet day. We went to church, enjoyed an international potluck after the service, hung out with Katie's family (Daniel's girlfriend) at Marcellus Park and then hung out at home listening to Odyssey tapes, watching Saving Nemo, and eating popcorn.

How can you pray: David is struggling with constipation, continues to tire easily, and is still easily frustrated and anxious. Praise: He has slept for the past two nights, and it looks like we have three levals of care set up for David when we go on our cruise.

Brenda and I are leaving for Rome on Sept. 15th. We will spend a couple days in Rome and then on the 18th, Brenda's birthday, we sail for Sicily, Athens, Mykonos, Ephesus, Rhodes, Santorini, and Naples. Please pray we can finalize all the details we still have to accomplish before the cruise. We return to Syracuse on the 28th.

Worry, what a waste of time

I read a great quote from Randy Alcorn's book, If God is Good. He wrote:

Worry is momentary atheism crying out for correction by trust in a good and sovereign God.

We have learned so much about God's goodness and his desire to be intimately involved in every apspect of our lives as we have walked, sometimes crawled, on this journey with David. We have learned to give thanks and to see grace in the strangest of things. It is grace that David is totally unaware that he is incontinent. It is God's grace that he is not bothered when we wipe his bottom, when we feed him, and when we use a Texas catheter to help keep him dry. We give thanks for a well timed bowel movement. Yes, the scriptures tell us to give thanks in all things! :)

Last night David slept like a baby from 9:30 to 7:30! God is good! We took him to the doctor yesterday and she thinks he is fighting a summer bug that is going around. He had a couple red spots on the back of his throat. This would explain why he is so tired and unstable. When ever David gets any little cold it really knocks him down. We are hoping as he fights this off in the next 4-5 days that he will return to the peppy, happy David we all know and love.

Today David will hang out with two of his aids, Dan and Laura. Pray that David has energy, that he has fun, and that Dan and Laura would both know God is using them to bless David and us. We are leaning towards not canceling our cruise. Yesterday was just a tough morning. Love you all.

Should we cancel our cruise??????????

So many things are happening so fast we are seriously wondering if we should go on our cruise in September to celebrate our 25th wedding anniversary. Last night David didn't get to sleep until after 2 AM and this morning he is so tired. Every time we ask him to stand up he says, "I can't, stop it." When we do help him up he is very unstable. Our hope is this too shall pass but we don't know. If he can't walk our stand on his legs we enter into a whole new world of transfers and transport issues. We have an excellent staff and friends who are willing to be with David but we are entering into uncharted waters. We need wisdom. I would be lying if I said it is no big deal if we did'nt go. We have been looking forward to this trip for a long time. We are pretty crispy. We realize it is not a good idea to make any decisions when we are also tired. Maybe things will look a little better by the end of the day.

Tough Day

Today was a tough day for David. Thankfully he was content but he had a very tough time expressing himself, kept on telling us he couldn't stand up, when we did get him out of his wheelchair he was very unstable on his feet, didn't have much of an appetite (that is until I barbecued him a burger on the grill), was very repetitive, and very low energy. Yesterday it seemed as if David took two steps forward but today he went back three. Several things struck us today: 1) We need to be prepared for the day David will be full time in a wheelchair. Our current wheelchair is just a lightweight one. 2) We need to figure out how to transport David once we get this bigger chair. 3) We need to get some type of lift that will transfer David from his wheel chair to his bed or the toilet. Thankfully the State of New York will help us. We are also in the process of getting a hospital bed. It is getting harder to stoop over to change him or care for him.

The day ended with an amazing blessing. Jackie Wojcik, a friend from our church, who plays with the Syacuse Symphony, brought three other friends to play music for David and us. My mom joined us as they played Mozart, Rogers and Hamerstein, wedding music, and other requests. David love it. Every now and then he would yell out, "Too Loud!" I think he asked them, "Guess what?" 50 times in the hour and a half they played.

Thankfully David has been sleeping the last two nights. Please continue to pray this continues.



As we listened to the quartet Daniel enjoyed sushi with some of his friends. He said he loved it. Personally I like my meat barbecued. He can have it. Tomorrows a day off. Have lots to do to get ready for our cruise to Greece and Italy. Will write more about that later.

Welcome to It is Well with my Soul

Welcome Family, Neighbors, and Fans and Friends of David Gregory Pfohl!

For many months now I have wanted to create a place of community where we can share with you our Journey with David; the good, the bad, the ugly, and the funny! A day doesn't go by that we are not asked; "How is David?, How are you? Is there anything we can do? How can we help? What exactly is Batten's Disease?" We will do our best to share with you as honestly and openly as possible. Be warned, there may be days we will be brutally raw and other days you will think we are being flippant about David's disease. Welcome to our journey.

Why the name, It is Well With My Soul? If you open David's Fayetteville Manlius Year Book you will find the following words under David's picture, "What ever my lot Thou has taught me to say, It is well with my soul?" For weeks we had tried to help David chose a quote we could use but David was never satisfied. The day finally came that it was due and David tried to tell his Vision Specialist, Donna Richards, what he wanted written. Unfortunately all he could come up with were a couple words:

River, Soul & Well

Donna called me and asked is this one of David's favorite bible verses? Being the seminary trained pastor that I am I said, "I have no idea!" I encouraged her to Google it. When she did, she found the words to It is Well With My Soul, written by Horatio Spafford. When she got to the line, "What ever my lot Thou hast taught me to say, It is well with my soul, he yelled, "That's it, that's what I want!"

So we want you to know, as we walk this journey together with you that It is Well With Our Souls! We thank you for your interest, your love, your prayers, and your support. We will try to be faithful in updating you. Feel free to pass this on to anyone you like.

If you are interested in learning more about David's Disease, Battens Disease, please check out The Battens Disease and and Research Association web page.