New Years Update

We have enjoyed a rich time as a family over Christmas and thanks to Dave Wilcox the sound guy at our church, we were given a DVD of the Christmas Eve service. ( Thank you Justin Cowan for delivering it ) and had a peaceful morning opening gifts and having a delicious breakfast....thank you Susan for the Cinnamon rolls! Now that Christmas is over I have a moment to give you an update on John and life in our household.

I will try to fill you in on the past 3 weeks....... 2 weeks ago was a really rough one for all of us. John's was struggling with his breathing and specifically had a hard time getting his lungs cleared out. There were many very late nights on the phone with hospice......until after their continued encouragement, John finally agreed to take an anti-anxiety drug to calm him down before these episodes begin, and morphine which helps to open up his lungs and improve his breathing. After one of these particularly bad nights , I had a mini meltdown and called Charlene Vigil , a friend and nurse who is part of our church. Many months ago she had offered to provide nursing assistance during the nights so Amanda and I could get some sleep. After holding off for many months from taking her up on her offer, I was now ready for help. That night she came over and was here till the early morning hours assisting us with Chest PT's and suction machines, giving us some much needed rest. She came the next night and did the same thing. I felt like the calvalry had arrived to us war torn soldiers. Since Charlene has begun coming she has now assembled a group of gifted and amazing servants who are nurses and who have kindly offered to help us each night with John's care. We are so grateful that you would do this for our family. Words are inadequate to express our heart felt thanks.

While John is more comfortable now that he is using the drugs to help him with the symtoms, he is also using the oxygen more each day and sleeping more each day. This is what we expected and what will happen as he is able to get less oxygen in his lungs. When he's fully awake and rested...he is still very alert and very much John! His mornings are the best, by nighttime he is much more tired and less conversive. We are so grateful he is not as stressed with his breathing and we have more time to talk and enjoy each other.

While we continue to enjoy precious times together and though we have stopped having visitors, our dear friend and pastor Adam Malcolm continues to visit John and is now reading to him from the book Heaven by Randy Alcorn. A book that is helping to prepare my wonderful husband even more for the moment he will see his Savior face to face and behold His glory. We do not know how much longer John will be with us but we would want you to know that we are all doing well in our souls, filled with God's amazing grace, and so very grateful for the time we have had. ALS has often been referred to as the long goodbye. We have grieved much along the way as John was faced with one loss after another. So many milestones have marked our journey. Not being able to drive anymore, not being able to play his beloved guitar anymore, not being able to stand, or being able to hug each of us, not being able to feed himself........the list goes on and on. There have been many tears, as we each had to face the reality of our new normal. But through it all we felt sustained by grace and given strength we know was not our own.

Lastly, you our friends have made this journey so much lighter through your constant and loving care for our family. You have brought us meals , cleaned our house, sent notes of encouragement, gifts of money to help out while I’ve taken Family Medical Leave from work, brought church to Johnny so he could experience corporate worship, those men who would come regularly to visit with John, giving us time to run errands, Christmas dinners fit for a king, youth groups who cleaned our garage and chipped in their own money to buy us a refrigerator for extra meals, The list goes on and on..............

Romans 8:28 says that for those who love God....he works all things together for good, for those who are called according to his purpose.

By God’s grace we felt very early on that we were called to trust Him and that all suffering brings with it an opportunity to display his work in our lives. We pray that in some small way God has become greater to each of you through our trial, that you would not fear the future and know that God allows all these things for our good and for his glory.

Pictures from Open House

Worship Night -Nov. 21

Here are some pictures from the night of worship we had at the Spiros in November.

Meal Sign Ups

Hi Everyone -

I wanted you all to be aware of a website that has been set up to coordinate meals for the Spiros. If you would like to help the family in this way, please visit this site to sign up. John's care has become quite a full time job, so meals are a great help. Details are on the following website (also located on the sidebar of this blog).

http://www.takethemameal.com/

When you log in, use the name "Spiro" and password "4701".

Thanks!

Update - December 18th

Thank you so much to each of you who came to the Open House and waited patiently to speak with John. He regretted not being able to visit with every person. We are grateful for each of you and what you have meant to John. We also enjoyed a wonderful visit with John's brother Dennis and his family last week. His sister, Christy, from Arizona and her husband will be spending the holidays with us as well as his sister MaryAnn, who lives in Baltimore. We are so grateful for the time we have to say what's on our hearts and express the love we feel towards John.

Every week his health continues to deteriorate; breathing and speaking are becoming extremely difficult and exhausting. The hospice staff have stressed the importance of keeping him calm and rested. Therefore, with great sadness we must now gently close the door to visits beyond family and very close friends. Rather than spending precious time trying to schedule visits, we as his family now feel

its best that we simply spend our time surrounding, loving and supporting John.

We continue to experience God's grace each day and John's soul is at peace, awaiting the day when he will see his Savior.

Please pray as we continue to care for John.

Link for Financial Help

Hi Everyone -
A friend from Kathy's work has set up a blog with a paypal link for John and Kathy. If you would like to contribute financially, this is great, easy way! Thank you for your continued prayer and support.

The website is http://spirofightclub.blogspot.com/

~Holiday Open House~

Hi Everyone -
John and Kathy and their kids are looking forward to seeing many of you tomorrow. (Sunday, Dec 5). I wanted to simply remind everyone that John is not up for long visits or talks. Due to his decreased lung capacity, he really needs to conserve his energy as much as possible. John will probably spend most of his time up in his room and you are welcome to come in and say hello, but please be mindful of this. Knowing John, he would never want to stop a conversation or make anyone feel uncomfortable, so that's why I thought I would let everyone know ahead of time! :)
As a reminder, their home will be open for visitors between 2 and 5 tomorrow. They'd love to see you!

Update - November 23rd

Well, much has happened in one week...... Since John was released from the hospital we have gotten all the necessary equipment and meds to help fight off any future lung congestion. What a relief!!! We were also able to get hospice care in place which will now oversee our care, our meds and also will provide extra help for some of the daily tasks we have been doing. We are all very relieved and encouraged by their involvement. It also became clear as we considered what the next couple of months will look like that I needed to be home full time in order to care for John and to make the most of the months we have together as a family. I am so grateful there is such a thing as the Family Medical Leave Act which allows employees up to 3 months of leave, while paying their insurance, and holding their job for them. Right now I will be taking off through the holidays and then will reevaluate if I should go back to work on a more reduced number of hours. For now, its been a real gift to have this time together as a family! We could not be more grateful.

Wrote this one day later..........I'm so slow at posting :(

We are now officially in hospice care as we have met with the lady who will be our primary nurse and a social worker. They are seeing about getting a CNA....nurses aid, to come 3 mornings a week to do the morning routine for us. This would be an incredible help to us, so we're praying they have the available folks to be able to do it. We will find out soon. Additionally, our nurse Leslie will come twice a week to check in on John and monitor his status. In the short time we have been with them, we've been overwhelmed by the amount of support we have received.

For many years we have had the tradition of going out with our good friends Steve and Vikki Cook to cut down our Christmas trees after enjoying a breakfast feast together. Well, after a few cold and rainy years and the Cooks moving away to Minnesota we began to go and purchase trees that had already been cut down. This is then followed by lunch at Red Robin restaurant. Last year the ALS association provided the lift van allowing us to do this family tradition. Thanks to your contributions and support in the " Walk to Defeat ALS" they will once again be providing a lift van so we can continue our family tradition.

We continue to be incredibly blessed and humbled by the care we are receiving from so many of our friends and family. The delicious meals, the calls, the gifts of money.......Amazing! Sunday night about 40 people came to our house for what has become known as " Bringing church to Johnny". It was such a rich and encouraging time for John and the rest of our family. The scriptures that were shared, the songs that were sung and the prayers that were prayed.........really helped us to redirect our focus not on ourselves and our trial but on our savior who suffered the ultimate suffering, death on a cross.

John loves visitors but sometimes does not know his own limits :) So, please give Amanda or me a call before you stop by for a visit. A - 240-676-0257, K - 240-676-4921. Even is you are scheduled, its always a good idea to call. Somedays are better than others. Thank for your understanding!


Have a wonderful Thanksgiving!

Love,

Kathy

Home from the Hospital

We are relieved and grateful to be home from the hospital. The necessary treatments to clear out Johns lungs were very helpful and made him feel much better. Sleep or rest however was another story . After being there one night and one day, we felt we'd recover better at home so asked to be discharged. Friday was the day we were scheduled to go to the ALS clinic for our 3 month "check up", but couldn't make it because of being in the hospital. While in the hospital however, they did perform the lung capacity test which showed that John's number had dropped from 40% in August to close to 25%. The progression is moving at a much quicker rate than we expected. The reality of the disease and its affects hit us afresh and have prompted us to get many things in order. Doctor Mays our doctor and friend is caring for us so well, ordering meds, machines, and also will be getting the ball rolling with Hospice Care next week which will be a welcome relief for our family. In addition we now have oxygen, a nebulizer, suction machine and BPap ..... scattered around our bedroom. All things considered, we are doing well and are looking foward to enjoying precious times with friends and family. God continues to encourage us through his word and assures us we are not alone as we go through this. We covet your prayers for our family that we would glorify God as we walk through the next few months. Your notes, meals, calls, and visits all mean very much to us. We feel so loved and cared for and are so grateful for each of you.

Psalm 9:9-10...The Lord is a stronghold for the oppressed, a stronghold in times of trouble. And those who know your name put their trust in you, for you, Oh Lord, have not forsaken those who seek you.

Romans 8:18...I consider that our present suffering are not worth comparing with the glory that will be revealed in us.

Love,

The Spiros

#2 Update

Hey so Amanda here =) Okay so Dad is still in the hospital and is looking to be discharged. He spent the night here and was cough free. He had a nebulizer treatment around midnight and after that was put on the hospital's BPAP machine and tried to go to sleep at 1:45. At 3:30 he woke up and realized the machine wasn't working properly and we called the respiratory man. We ended up hooking up our BPAP machine with their mask, since we forgot our mask earlier that night. He had one more nebulizer treatment and was ready to go back to sleep at 4:45. Doc Mays greeted us in the morning and let us know what was going to happen today. Dad's breathing is doing much better and all the congestion is out of his lungs. This is mostly to due to the nebulizer which Doctor Mays ordered for us to have at home. Right now we are in the process of getting him discharged. We are waiting on his flu and pneumonia shots. The process of getting him discharged can take 5-8 hours, so we are trying to get thing moving so dad can get home to his bed and have a good night's sleep. This morning I was blessed by texts and emails from friends just encouraging our family with scriptures and many, many prayers. Thank you! God is in control of this situation and he remains faithful throughout this time. These texts and emails of encouragement have hammered those truths further into my heart and that is the biggest demonstration of care.



Hope you enjoyed the photobooth pics! We got a couple of 1 am laughs out of it.

Love,

~Amanda

Update on John

As many of you have heard by now.......early this afternoon on the recommendation of our Doctor
( Doc Mays ) John was brought to the hospital to get some chest X Rays to determine if he had Pneumonia or not. For the past several days he has had a hard time coughing up mucus in his lungs. But, because he has little muscle allowing him to cough , he has a hard time getting his lungs cleared. They are doing many different respiratory treatments on him to loosen things up and clear out his chest. We're doing well and feeling a God's grace and peace. Our good friends the Fortiers are in the same hospital awaiting their son Eric's tonsils removal. We seem to do everything together :). While I stayed with John, Chris Fortier and Amanda went out and brought back pizza for all of us, so its been a real party in the ER. While we wish he was home, we're glad he is in such capable hands and they can treat the problem better than our family could. They are giving him a Nebulizer treatment every 4 hours, which has already made a huge difference. Thank you to everyone for their texts, emails and prayers. They are much appreciated! We feel so loved and cared for as we continue to walk through this season of our life. So comforting to know God orders all our days, for our good and for his glory!

Walk to Defeat ALS

Last Saturday morning a large group went to Frederick to join in the ALS Walk in honor of John. It was great having John join us this year!





Here is the link for the rest of the pictures from the morning:


http://www.facebook.com/album.php?aid=84083&id=1043064000&l=6a730d5d88

Amanda here =)

Well as you know we aren't that amazing at blogging. Today is a very special day, it's my Mom's birthday!! I figured this is a perfect opportunity to use this wonderful blog to share about what an amazing woman she is.



My mom is my best friend. It hasn't always been this way. Through the ages of 12 and 15, I was a walking terror. I was running after the world hard and having "fun". All though I wanted nothing to do with her, she wanted everything to do with me. And I was not happy about it. She pursued me with all the strength the Lord had given her. She basically never trusted me, which was very wise. She continually would check up on me and try to talk to me and seek me out. I hated it. I hated the fact that she always had to be involved. I hated even more that she was always right when she would confront me on what I was up to. I hated that she would tell me no. She loved me so much, that she cared more for my soul than she cared about what I thought of her. She knew that challenging me to do things God's way and not the worlds way, would make me dislike her. Glorifying God was more important to her, then having my approval. There were tough times, lots of fighting, screaming, arguing and crying. She took her calling as a mother seriously, she knew that this time in my life she couldn't always be my "buddy" but had to parent me.



I am now eternally grateful for the sacrifice she made for me in my teen years. Thankfully God has saved me! I am so happy God used my mom in my life for his purposes. It grieves me how much I hurt her and how many times she would go to bed crying. Now we are best friends and are able to have a biblically based mother-daughter relationship. I am provoked by her daily example of laying down her desires to serve others. Ever since I was ten she always had me serving at the church, for mothers with kids, conferences, and at home. I love her so dearly and I am privileged to be her daughter.


We are now watching my dad suffer with ALS, it has been more than difficult and testing. However watching my mom earnestly seek the Lord daily and seeing her grow in her love for her Savior is such a blessing. God is strengthening our friendship even more through this trial and I am undeserving to have such a wonderful best friend. Thank you Lord for giving me such an amazing example and for giving her life. Happy birthday mama!!!!!

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!