OVERWHELMED AND AMAZED

That's how we would describe John's reaction to his surprise party.............

John apparently had been suspicious that something was in the works, but had no idea it would be on such a grand scale :)We are so very grateful to each of you for coming and making it an unforgettable night for our family. It's a memory we will cherish for a very long time. Where do we begin..........for those of you from out of town or are simply reading our blog. The night included lots of music as you would expect from a party for John. We had the Flower Hill Bluegrass Band which John helped to start many years ago, and a jazz group that John regularly played with for various events.







As you will see from the pictures, it was an outdoor event at the beautfiul home of good friends Eric and Dawn Newquist. Many months back Dawn asked what she could do for us.......I mentioned that I would like to have a party for John and she said "Let's make it happen!" The complete generosity of these dear people to open their home to over 200 guests so that this party could happen, brings us to tears. They have opened not only their home but their lives to serve our family.....thank you Newquists!!!




































As John pulled up in his limo ( van service provided free by ALS Association ) he was surrounded by his cheering friends. In usual John fashion, he proceeded to peel around in his powerchair doing 360's. The food was delicious including smoked pulled pork provided by our good friend Scott Sheldon of scott@fat-daddys.com.










There was a special program which included songs and testimonies honoring John. We hope to post a video with highlights of this soon. We opened our program with Johnny B. Goode..........followed by the Ballad of Johnny Spiro to the tune of Davey Crocket........you get the idea. Lots of laughter as well as tears of gratefulness as John's friends communicated the impact his life has had on them. It was all so moving and heartfelt and John was deeply moved and grateful.









One of the most unexpected moments came as our friend Harry Gottlieb presented John with his Father's Purple Heart that was awarded to him from WWII. He said " I wanted John and his family to have this for the courage and faith they are showing for not giving up" in the face of their trial. Wow! Not a dry eye in the place. Thank you Harry, John felt so honored but unworthy








Then our pastor, Adam Malcolm presented us with money that our friends has collected to help towards buying a van with a lift. To our amazement, we were given almost $9,000. Unbelievable! We have been blown away by the outpouring of love and support from our friends and family. This was yet another expression of love and care for us. We are so excited to begin looking for a van so we can go places without the cost of a cab. THANK YOU SO MUCH! We'll post a picture after we find one. We have included pictures of the party and only wish we could have included many more of you. It was an evening proclaiming God's grace and God's glory. We are eternally grateful to God!


Below are a few more pictures from the party!

Oops! Forgot one.

Wedding ring is now on his pinky =)

Some photos from our GW trip!

Our driver, Joe.




Going around the block checking out George Washington University.



On our way home!

Update from GW ALS Clinic

Our visit began with seeing our Pulmonologist. The lung capacity test revealed that John was at 40%. It had gone down from 60% 3 months ago. The doctor recommended that he try using the B Pap device at night. This will hopefully help him to not work so hard breathing at night, will allow him to sleep better and have more energy during the day. They will be fitting him for that soon. After that we were seen by our Physical and Occupational Therapists, as well as our speech therapist, Neurologist, social worker, ALS association rep, medical equipment rep and last of all our psychiatrist. John entertains most of these young fresh out of college therapists and they don't quite know what to do with him. We had a new ( our 3rd ) shrink this time so we were able to once again share with her all the ways we are being cared for, the hope we have within us in Christ and the joy we are experiencing in the midst of this illness. She was quite taken aback and said " what a happy story, that is not the norm". What joy it gave us to declare God's goodness towards us. What a change we have seen in our own hearts as we are not only not dreading going, but are actually filled with anticipation as to who we can share with while we're there. This a work of grace and the result of all the prayers on our behalf when we are there. Thank you!

The waiting room is a mixture of people of various ages who also have ALS. Lord willing, we want to try and introduce ourselves to some of them next visit. Having Amanda along worked out really well as she's the primary caregiver when I'm at work and the PT lady was able to show her how to stretch out John's arms and legs. The Medical equipment rep is looking into getting John a device that supports your arm when you can no longer lift it on your own. This could be helpful for eating and drinking.

Due to fluid build up in his hands and feet his wedding ring was very tight and unable to be removed. Our Neurologist was so concerned that she tried to slide it off using soap right in the exam room. After than didn't work they sent us down to the hospital ER to see if they could remove it. But we realized this would take too long and our ride would be there soon. So, thinking we'd take care of it next week we headed home. That night our friends Marc and Terry joined us for dinner and as we mentioned it and they saw John's finger which by now had even become more swollen, Marc got his heavy duty wire cutters and a pair of plyers and cut away. Woohoo! There was just enough room that he didn't cut John's finger. At times these ALS clinic visits may tempt us to be a little discouraged because of the "semi-'futile" nature of the care that is available for this condition. BUT, the reason we are not is that we really believe God in His sovereignty has a purpose for our participation. Again we thank you so much. We feel your prayers!

John's Testimony at CLC

John was asked to give his testimony at Covenant Life Church. Here's the link if you'd like to watch the video.

Summer Update

Dear Friends,

Sorry for my lack of an update. After much prodding from friends, here it goes!

Back in May we had our GW ALS clinic visit. Thank you so much for your prayers. Once again, we felt them and know they made all the difference. We didn't learn anything new at this visit, however, had a couple of stories to share.
Our day began with a new driver from a new Cab Co. picking us up. I say this because, I liked their cab better and told the woman driver how much I liked it and commented that our whole family would be able to be in the van at the same time, and how nice that would be. Anyway, she then said to our surprise, " Oh, did you know we sell used ones all the time for a very reasonable price?". We then asked her how much she was talking about and she said usually under $5,000.00. We had never really prayed about a van because it seemed like an impossibility ....... real people of faith :), but now this opened up a potential for actually getting a van. We were so encouraged and told our driver how God had arranged for her to drive us that day and how she was being used by God. She then offered to call her boss and find out whats available right now. On Monday she got back to us and said that nothing is for sale right now, but things change quickly, and for sure some will be available in December. Woohoo! We hadn't even begun our drive and were praising God for the prayers of the saints and for God going before us and providing what we need before we even ask. This would change our lives dramatically. As it stands now, we have to pay about $40.00 to attend church using a cab and that makes it difficult to also go on Date Nights, Youth Meetings and other events John would like to attend. So, this would be something we are excited about and now in total faith for and would appreciate you joining us in praying for a van to become available as quickly as possible.
Our first stop is Pulmonary where we check in and pay our co-pay. So, I'm standing there with John next to me and really I don't think John or I had spoken much of anything, maybe I asked him if he had his insurance card. Out of the blue Tawanda, the individual checking us in said "how long you two been married?" I told her 23 years and inquired why she was asking. She then said, "Oh you two just seem comfortable and I can tell you're in love". THEN, she elaborated and said "You asked him a question and he answered". Who would have known that simply not grunting would be such a testimony!

On to present day.

Since that visit, the disease continues to progress, to where John now has a hard time feeding himself. As a result of this progression, it is difficult leaving him alone for long periods of time. Amanda has quit her job in order to stay home with her dad and be available for his needs - from preparing food, to adjusting his chair, picking up things that are dropped and the list goes on.

We are hoping to find some willing volunteers who could assist us on a more regular basis. This could include afternoon visits or stopping by to help with other personal needs. You don't need medical training, just a willing heart! If anyone could serve us in this way, please contact us at jakaspiro@gmail.com

Even if you are not able to do anything regularly, drop in visits are much appreciated - please call John's cell prior to coming over: 301-437-1510.

We will be returning to the GW clinic at the end of August for our quarterly visit. We don't ever expect to learn much from this visit. It is more a monitoring of the progression of the disease. There is no treatment. The hardest part of these visits is the reality of all that is being lost and our "normal" keeps changing.

"But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body." 2 Corinthians 4:7-10

We continued to be sustained by grace. We are so encouraged and thankful for every prayer, note and gesture of care on our behalf. Thank you.

~Kathy

November Update

Time for our rather belated November Update.

First things first. With the support of all our friends and family, we were able to raise $2324.00 for the ALS Association. We had over 50 people who joined us in the walk as part of the ‘Spiro Fight Club’ team. Special thanks to Marcy Fox and Jenn Legg from my work, who organized the team and made T shirts for all of us.



Next ...our bathroom renovation. Thanks to the hard work of Marc Fortier, our floor and walls are tiled and showers have been a working ever since. Woohoo!! John is able to be wheeled in on a shower chair and once again enjoy a hot shower. We still need to paint, put up mirrors and a few other things but we are so grateful and so enjoying our new bathroom. Thanks Marc! Joe Mori, Dave Leo, and others have been very helpful in doing other projects (like installing a new door, plumbing, etc) that has helped make life easier.





ALS update, after getting counsel from various people we have gone ahead and made the change from Johns Hopkins ALS clinic to the George Washington University ALS clinic. Our primary reason for this is our desire to be seen by a Neurologist and we were not able to do that at Hopkins. So on December 7th we will be taken, courtesy of the ALS van, to the GW clinic down in Washington D.C. Perhaps by now they’ll be able to give us A firm diagnosis and make us eligible for some trials. This past month had a couple of rough weeks where John was fighting a lung infection that left him especially weak. This combined with the ALS made it impossible to transport him out of bed so after a week, several phone calls and lots of heavy lifting with the family we were provided a sling lift by the ALS loan closet. It’s been such a blessing and would have cost us thousands to purchase. It’s helped us so much in transfer from bed to the chair etc....... Sometimes its difficult to plan ahead for the new equipment that we’ll need so we’re very grateful to have one now. After a trip to the doctors office and several rounds of Antibiotics he seems to be much better. We need to be especially vigilant against future lung infections as its very difficult for John to cough deeply due to loss of diaphragm and other muscles.

Thanks to John’s longtime friend Joe Mori and other friends, they have come up with the idea of “bringing church to John“ as its often too difficult to make the trip. Once a month on a Sunday evening we are treated to a wonderful time of worship. It also serves as a chance for John to visit with many of his friends he doesn’t often see. We’ll include some pictures of these times in future blogs.

One of the youth groups at our church showed up on a Sunday afternoon a few weeks ago and cleaned, organized and did yard work that we were unable to finish this fall. God has continually provided just what we need when we need it. The care and support of our friends continues to amaze us!!

This past weekend we made our traditional trek to pick out a Christmas tree. While the family picked out a tree, we ran it by John who was in the ALS transport van giving a thumbs up. After that we met at the mall where we enjoyed lunch together, followed by a couple hours of walking around the mall. It was so great to be OUT together as a family!!!



We have much to be thankful for and God has showed us his love, care and provision in new ways everyday. John says daily that regardless of his temporary condition, his greatest problem and “disease” has been taken care of by his Savior’s finished work at the cross, and we are never without hope!!