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!!

October Update

We know its been a while since we gave an update so here goes.......OCTOBER UPDATE

We know its been awhile since an update. We will try and do one every couple of weeks but at minimum every month. Much is going on and we are truly overwhelmed by the care and support of our friends and family.

We saw our primary care Physician recently and discussed with him the potential for this being Lymes's disease. So many of you have suggested we check it out and believe me, we would love nothing more than to to hear that diagnosis, but so far, none of our Neurologists or Doctors have been keen on following up with the tests. Our doctor agreed to do one more blood work up and see the numbers. We are so grateful to all our caring friends who have provided doctors names, books, etc. related to this and just know that we have looked into the possibility and all the tests results have come back negative. ( Including Western Blot, CD-57, etc.... So, after this final test result is received, we need to ask that you join us in putting that possibility to rest and not provide more doctors or possible tests. Thanks so much for your understanding!!. Our biggest need at this point is to find a Neurologist to oversee our care and provide a definitive diagnosis. This will allow me to possibly participate in some clinical trials that are available.

It seems there's always a new necessary renovation project happening in the Spiro house to make things more accessible. Our next big project is the renovation of our master bathroom. This has grown increasingly more difficult or impossible to use. This renovation will allow easier access to the sink, shower, etc. Some of our good friends who are contractors are donating much of their time to do this, for which we are incredibly grateful, words cannot express. When Danny and Liz Dustin from our care group heard that we were making some minor alterations to our bathroom they very generously offered to pay for the cost of a more extensive and nicer :) renovation. We are humbled by their kindness and generosity! Work on this should begin soon and we'll post pictures of the extreme makeover! Thank you Danny and LIz!!

We'll be returning to Johns Hopkins ALS clinic at the end of November for a follow up. If we receive a confirmed diagnosis at that time, we may have access to future drug tests and trials. Our very dear friends Dr. Javed Khan and his wife Carolyn are kindly helping to counsel us in some of these areas. Again, God has brought us so many caring, and equipped friends who are stepping in to help during this time. Both practically, and otherwise. Javed noted that John didn't have an IPOD and thought that listening to hymns and other great music would feed his soul, so not long after that Javed gives John a new IPOD filled with many songs to help him keep his heart fixed on the promises of God. This will be especially helpful when he wakes up often during the middle of the ngight. Of course John will likely add Miles Davis and other jazz greats to add to the mix. Thank you Javed!!

We're thankful and gratefully relieved that this week our insurance company notified us that they are covering the full cost of our power wheelchair, minus our deductible. Woohoo!! Recently, John has had many opportunities where the Lord has allowed him to encourage others who were going through trials of their own. Some of these trials may be physical, financial, or emotional but the same God and Savior who is sustaining us is available to them.

We are also so grateful to God for our wonderful and willing children who have each stepped in to serve us when needed. It's a big change for all of us and requires much time and sacrifice, some days more than others. Amanda is taking a lighter load so she is more available to serve John at home. Joe is attending Watkins Mill High for an additional year of school and also will allow him to also be home more, rather than our original plan of sending him away to Job Corps. Gabriel is attending the University of Maryland Baltimore County (Universities at Shady Grove campus) which is keeping him close, though his time is the most limited during his 3rd year of college. We're so glad God gave us 2 strong sons who are there to literally help lift John when needed, which is more of late.

We are so very aware of God's grace and presence as we walk through this. Thank you so much for your prayers. One of our greatest challenges is that we adjust and get used to one level of difficulties , only to have to readjust and get used to a greater level of disability. Our new normal keeps shifting. As an example, the power wheelchair has made much of John's getting around so much easier, but now we are facing the challenge of transferring from the bed to the chair, from the chair to the car.......you get the idea. So..............after a few falls both in public and around the home where it required 2 -3 people to get him back in his chair or his car, we are hoping to find some able bodies servants who could occasionally help out.

Thank you so much to all our friends who have come by for visits, brought dinners, sent notes of encouragement and served us in so many ways. We could not go through this alone. It's been very humbling to be the beneficiaries of so much love and care. We are so touched by getting the weekly cards from our pastors letting us know they prayed for us, and love the weekly visits from Adam as well as some other pastors. We can't thank you enough!

Lastly, my dear friends at work have decided to join a Walk for ALS that will take place in Frederick, Md in honor of our family. We are deeply touched by their thought and initiative and; Kathy, Gabriel, Joseph and Amanda be will be joining them in the 3 mile walk. We are including the information below if you choose to contribute any money towards our goal or decide to enjoy a nice Fall walk in beautiful Frederick. It's on October 31st at 10:00 am starting in Baker Park. We will be getting T Shirts for Team Spiro so if you sign up as a part of our team, we'll get you a T shirt. You can sign up for what they have titled "Spiro fight Club". There is no pressure to gather a certain amount of money, and they make the whole thing easy for sign up. The numbers are growing so if you would like to join us, go ahead and click the link to the left. If you want to walk, you need only put down a small goal amount. Feel no pressure at all as there's no minimum amount necessary and the awareness if what is most helpful to the ALS association.


With love and Gratitude,

John and Kathy

Happy Birthday to John!

Tomorrow (Sunday, the 6th) is John's birthday! He'll be serving in children's ministry (events center) tomorrow if you'd like to stop in and say hello. If you'd like to send him a birthday greeting, their email address is: jakaspiro@gmail.com.

Finally . . . an update!!

Below is a letter from Kathy to all:

Well, we just returned from 3 days in Virginia Beach and had a wonderful time as a family making lots of great memories together. Going on a dolphin cruise was one highlight, another was spending the day with our longtime friends the Fortiers who came down from Williamsburg to hang with us. Here are some pictures ....

This was our first road trip since John's inability to walk and while it had its challenges, all in all it went well. We did become very aware that without our 2 very strong sons Gabriel and Joseph along, we could not have done it!! Just moving from wheelchair into bed or bath, to car, etc..has become a test of our physical and at times emotional strength. Some days are better than others, but many days find John feeling weak and unable to perform simple tasks without assistance. We have found several helpful devices to help, such as "grabbers" to pick things up off the floor have been great. While John is so very grateful for the ramp (thank you again Marc Fortier and Joe Mori!) that was installed, (pictures will be posted soon ) it is a rather scary journey every time he does it. The pitch of the ramp is a bit steep due to the small area in which it needed to be built , so he stills prefers to have someone spot him as he does it. Maybe in time it will get easier :)


So many of you have asked how he's doing or progressing and what is most challenging.
The inability or great difficulty to do so many everyday things is probably what is most discouraging for John. He has commented many times that he feels trapped by his body and likens himself to "a turtle living in the world of birds". Just getting ready for his day can require a few hours or more. When we are all going somewhere, like church for example, we need to begin the process well in advance to allow for dressing, bathroom time, getting him down the ramps to the kitchen to our side door, getting the outside ramp set, then from there he rides his power (or manual) wheelchair across our front yard to the car. Getting him from the wheelchair to the car can also be be difficult, depending on the day. It usually requires a minimum of 2 -3 people to assure he gets in properly. Again, we're so grateful for Bill Hennessey who lives with us and is often there to help John get from house to car and back; he's been such a blessing to our family in so many ways.

While this is not an easy journey and one we would not have chosen, we must tell you of the incredible faithfulness of God. Having been priviledged to be in the church for 30 years it should come as no surprise that the unending support, care and love we have been shown is simply amazing! Everything from people being so generous with their finances, sending us pizza every Thursday night (Thank you Paul and Norma) , making it possible for Amanda to go on the youth retreat, (an anonymous donor), rides offered during school, food runs by friends, notes of encouragement, and the many visits of our friends and pastors. Its been so meaningful that so many of you are praying for us!! Thank you, we feel and need your prayers! Every Friday we get a card from our wonderful pastors saying they've prayed for us. Adam Malcolm has visited many times, as well as visits from Mike Bradshaw, Mark Mitchell and Robin Boisvert. What a blessing to be the recipients of such love and care. During the 6 weeks of work where I was not being paid and our insurance was almost discontinued, we were kept afloat by so many of you that were often unaware of our situation yet felt led by the Lord to give us money. These served to increase our faith and bring us such encouragement as we were reminded that God is faithful, even when we struggle with unbelief. He has promised to supply all that we need. For the many men who have come by for visits with Starbucks drinks and other treats just to hang with John, it is so appreciated. He is so grateful for your friendships! We find that we love spending time with our family and friends, now more than ever we covet genuine fellowship as well as the need for laughter. It definately helps to lighten our load!!. Which brings me to my friends; Tracy, Rita, Susan, Terry, Martha, the crazy ladies...Carolyn, Nora and Susan as well as Marcy and Sarah from my work.........., the way you look out for me, care for me, listen to me and support me has been nothing short of amazing! As I sometimes feel stretched beyond measure you are always there for me. THANK YOU!!
We will most likely being seeing an ALS clinic doctor at Johns Hopkins soon to get a "confirmed" diagnosis. This will then allow John to possibly participate in some clincal trials. To be honest, we needed a break from testing, doctors and hospitals, so we took the remainder of the summer off. We'll keep you posted!

As for prayer needs:
That John will continue to seek God and His grace every day when met with new perplexing day challenges.
That Kathy will feel God's encouragement and strength when she faces the challenges of full time work and her desire to be a godly wife and mother.
God's wisdom and guidance for any medical treatments or therapies to pursue.
Daily strength for Gabriel, Joseph, and Amanda as they pursue school and career while dealing with the set of circumstances.

Cleaning Help

I've added another "help" option to the left. If anyone would like to serve them in this way - perhaps 1x/month or whatever works for you - just press the button on the left.
Thanks again!

Ramps Installed!

Thanks to the kind help from Marc Fortier and Joe Mori, the Spiros now have a ramp inside their house, making it possible for John to get to the kitchen/lower level on his own! Thanks also to Danny Dustin for providing the wood. They will begin work on the outside ramp that Drew kindly offered after Reid's passing. They will install it on the deck and then will need guys to help build the ramp to the driveway. We will keep people posted as to when that will occur.
Thanks for praying for Kathy's job. It looks like her job will continue, insurance will continue and all money owed for the past 5 weeks will be paid soon. That is a huge answer to prayer, especially the insurance. Please continue to pray to this end!!
Harry Gottlieb and Michael Thompson brought coffee and bagels on Saturday and had a great visit with John. Visits are always welcome but it's recommended you call John's cell to make sure he's up to it on that particular day - 301-437-1510.
Lastly, as you pray, please continue to pray for grace as they face all of these adjustments to their home and life.
Kathy has expressed numerous times how grateful she is for your prayers and care. Thank you!

Caring for the Spiros

Welcome to the Spiro Family Blog. After talking about how to best care for John and Kathy and their family, a group of us have thought keeping this blog would be the easiest way for friends and family to keep up with their needs (prayer and practical). I will be updating the blog as needs arise as well as to inform everyone of present prayer requests that I hear from John or Kathy. Please feel free to leave comments and encouragement for John and Kathy in the comment section.

Prayer Requests:

• that the insurance company would cover the cost of John's new power wheel chair
• God's continue provision and insurance coverage through Kathy's job
• wisdom and guidance about how to make their house more accessible for John
• slow the progression of limited mobility for John
• Kathy's work schedule is up for re-structuring - pray for a schedule that would best serve her family
  
• pray for increased faith and grace as John and Kathy walk this road

Practical Needs:

• Meals - Rita has offered to organize meals for their family. If you are available to serve them in this way, please click the link to the left.
  
• Rides - Terry is organizing rides for Amanda. If this is an area you could help with at some point, please click on the link to the left.