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