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Saturday, January 26, 2008

Dear friends and family - - -

Christmas went well. We went to church on Christmas Eve, as we traditionally do. We were home on Christmas day and went to Phil’s brother Larry’s house in Evansville for the weekend afterward. It was great to be with family. We really just tried not to dwell on the “momentous-ness” of the occasion, which can only be known in hind-sight.

Having our new (to us) full-size van was a huge help. We really had to have something different for Dylan’s sake – we had his car seat tilted back in the Durango and his legs were all the way into the front seat. Not to mention how hard it was to bend over and lift 36 pounds while twisting sideways to get him into the seat. We had to bend over, raise up and twist all at the same time. It’s a wonder Phil didn’t have another back surgery over it. All that to say, it’s much easier now.

Dylan just had his 4th birthday on January 16th. Yes, I said FOURTH!! We are so amazed and grateful to have him with us. For Dylan’s birthday celebration, we went to Build-A-Bear and made bears for all the children in Hospice in middle Tennessee and also some other very sick children we were aware of. Each family that came was given a name and age of a sick child, and they picked out what they thought the child would like. The Build-A-Bear process is very sweet. Each child was given a little soft heart and they kissed it and rubbed it to make it warm and said a short prayer (not standard practice) for the sick child. The hearts were then “stuffed” in the bears. Dylan’s bear has about 20 hearts – one from each child that came. The boys named Dylan’s bear “Dill Pickle” and it is something we will always treasure.

Dylan liked his birthday cake – at least the icing, anyway. (See updated pictures on the website). It was snowing when we left the mall. Phil got major Dad points for getting out in the snow with Jackson and Conner that night to make a 4 ½ foot tall snow man. It was the only one in the neighborhood and there’s still a little bit of snow left on the front porch. So that was January 16th.

January 17th was also a big day in our family. We received our “pink”, which in Guatemalan adoption circles means that we received our embassy appointment date and permission to travel to pick up Sophie!!! The appointment is on February 5th!! Amy leaves on Sunday, February 3rd and will bring her home on Thursday February 7th!!! In case you’re counting, that’s a week from this Sunday!! We have been frantically “nesting”, which has been so much fun! We pretty much skipped the nesting stage when Dylan was born because Phil was out of a job. So nesting has been very fun, especially in pink which is completely new to us. “Fun” is not a word we have used a lot in the past 3 ¼ years and we feel so blessed to have it back in our vocabulary. We were also expecting “Murphy’s Law” to strike and find out our appointment was during Phil’s trip to France. Thankfully, he will be home for a few days before Amy leaves, so that’s another blessing. Larry’s wife Tammie is making the trip with Amy, while Phil holds down the fort at home (with Heather’s help).

Please pray for our family as we bring Sophie to her new home. She will probably be grieving the loss of her foster mother Bety, who is the only mother she has known. She will have so many adjustments to go through. Please also pray for us and the boys that the transitions will be smooth and Sophie will bond deeply with each and every one of us.

Thank you to each and every one of you for being a part of our lives. Please continue to pray for the following specifics:

For Dylan’s miracle, to restore his health.
For protection against the flu and other viral illnesses that are going around (Conner is vomiting today. Please pray that Dylan won’t get it and that it won’t run through the family before Amy leaves for Guatemala).
For sleep for the whole family as we add Sophie to the mix!
For Dylan, that he will not suffer with pain or fear.
For Jackson and Conner as they continue to deal with what no big brother should have to, and for their relationship to Sophie.
For Sophie, as she loses her foster mother and homeland, and receives new ones. Please pray that the attachment will be so strong that she will never feel any loss or rejection from being placed for adoption. Please pray for Sophie’s bonding with Amy, Phil, Jackson, Conner and Dylan.
For our family, that we will stay strong, stay together in our decision making, and that we will see Joy in our lives.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We have posted new pictures. The prayer pager number is 1-865-701-2794.

Continuing to Pray for Dylan, with Faith, Hope and Love,
Phil & Amy

Wednesday, November 21, 2007

Dear Friends and Family –

It is Thanksgiving week, and we are blessed to have Dylan with us. Each year as we experience the holidays, we try not to think about the future and that this may turn out to be Dylan’s last (fill in the blank) holiday. Dylan will turn FOUR years old in January, which is double the two year maximum life we were told to expect. For this miracle, we are very grateful. However, we had hoped and continue to pray for a very different miracle, that of complete healing for our precious son.

The “big boys” have had a much more emotional fall than usual. With each issue that arises, we are left to wonder – “Is this related to Dylan’s illness, or would this have happened anyway?” For Conner, we think it is related to Dylan. For Jackson, we think it may have happened anyway. Jackson turns 10 next week, and we think he’s getting some pre-teen issues already. He seems to be “9 going on 15”. Conner is suddenly very into talking about his “feelings”, of which there seems to be only one – sadness. He said that whenever I say a prayer, it makes him think about Dylan dying. This is not the discussion we want to have every night at bedtime, because he gets all wound up and crying and can’t sleep.

We went to Angie’s for Halloween and trick or treating. Jackson was Buccaneer Bones, Conner was a Ninja and Dylan was the Crocodile Hunter. Dylan didn’t exactly enjoy it, but we took him trick or treating just “on principle” because the other kids were going.

Three years ago, we took a trip to Mexico (to our timeshare) about 10 days after Dylan was diagnosed with this terminal illness. It was a precious family time, so fraught with shock and sadness. We hadn’t been back since. We tried to go once and even had Dylan’s old hospice nurse ready to go with us and we backed out. We just couldn’t imagine duplicating our Knoxville hospital experience in Mexico, with fewer resources AND a language barrier. All that to say, we haven’t been to the beach as a family since then. Phil kept asking Amy if there wasn’t something we could all do for Fall Break. There didn’t seem to be an easy answer. Finally, we just decided Phil would take Jackson and Conner somewhere, if possible, at the last minute. He checked our timeshare in Mexico and lo and behold – it was available for that time. But we knew flights wouldn’t work out to use our frequent flier miles to fly free so that would be that, but it DID!!! So off they went. Phil took the Jackson & Conner to Puerta Vallarta and they had a great time at the beach without breaking the old pocketbook.

As for being thankful for blessings, we have a HUGE one. Amy gets to go to Guatemala next week to meet and visit Sophie!! The adoption has had some hiccups with changing adoption laws in Guatemala, but we feel confident enough that it will complete for Amy to go visit. She leaves on Wed 11/28 and returns on Monday 12/3. She is going with a friend who is adopting 2 babies from Guatemala. Amy & her friend will stay in the same room with 3 babies!! It looks to be a wild ride! Amy is beside herself with excitement. The very idea that she will meet our daughter is just staggering (but in a good way, for once!). She will get to meet Sophie’s foster mother, and take all the pictures and video possible. She can take toys and presents to leave for Sophie. Anyone who knows her very well can just imagine how much stuff she is dragging down there. Let’s just say that the kitchen sink wouldn’t fit, but everything else had better! It will be extremely hard to leave Sophie down there until the adoption is complete, but the alternative of not going at all to visit is even worse. Phil is quite jealous, but is staying home to hold down the fort (with Heather’s help, of course). Please pray that Sophie will accept and love Amy during this trip. We have fallen in love with her already through the pictures, but Sophie must think it quite cruel to be dropped off with a stranger for 5 days. Even if it is her new Mommy.

Two more Praises – Dylan’s vomiting is better and has returned to the ~ every 3 weeks when he empties his stomach on either Phil or Heather. Amy is also sleeping again and feels AMAZINGLY better. The need to sleep had become almost primal for her – MUCH more important than food, probably second only to water. Finally the right combination of ritual and intervention succeeded so we’re not changing a thing!

We still anticipate bringing Sophie home sometime between March and May. We know it will be crazy busy and quite difficult, but we know it will be worth it in the long run. When we bring Sophie home, we will need to get more help than Heather can do (she’s here 20 hours/week now). So if you know of someone interested in the all-around “Mom-type work” (you know what I mean – the thankless, never finished, Doctor to Janitor type stuff), please let us know. That will become a huge source of need for us in the Spring.

Last year, Jackson & Phil teamed up against Amy & Conner to see which team could come up with the most things to be thankful for. Both teams found several hundred things. Jackson seemed grateful for every toy he’d ever owned and Conner & Amy were grateful for all the people they knew. But it was fun and amazingly – ended in a tie. Both winning teams got to go out on a fun date. It was a nice little way to celebrate Thanksgiving and one we hope will become a tradition. So be creative in your Thanksgiving, but most of all, be thankful. We know it could ALWAYS be worse. One situation specifically comes to mind – our friend Laura in San Diego has a daughter who is 4 months younger than Dylan with Krabbe. Laura just gave birth to twins in early October (beautiful heathy girls). When the fires came through San Diego, Laura and her husband had to take their sick child (with feeding tube and suction machines and all the various medical equipment we depend on) AND newborn twins and evacuate while recovering from a C-section. So next time you are having a bad day, or tempted to be ungrateful, remember that. (Their house was not burned, by the way).

Thank you for your love and support. Please continue to pray for the following specifics:

+ For Dylan’s miracle, to restore his health.
+ For Dylan’s comfort (the vomiting is better)
+ That Amy & Dylan was will continue to sleep!
+ For Dylan, that he will not suffer with pain or fear.
+ For Jackson and Conner as they continue to deal with what no big brother should have to, for peace, contentment, and joy.
+ For Sophie in Guatemala, that the adoption will go smoothly and quickly and that she will have the best possible love and care in her foster home.
+ For our family, that we will stay strong, stay together in our decision making, and that we will see Joy in our lives.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. The prayer pager number is 1-865-701-2794.

Continuing to Pray for Dylan, with Faith, Hope and Love,
Phil & Amy

Sunday, August 26, 2007

Dear family and friends -

I feel a little like a person entering a confessional – Bless me father, for I have sinned, it’s been 3 MONTHS SINCE MY LAST UPDATE!! Summer has come and gone and the boys are back in school. Spring Baseball is over, and yet shockingly – Fall Baseball (for Conner) started this week. Summer swim team (for both boys) has come and gone and now Jackson is starting year round swim team. The way we function is that Heather keeps Dylan at home while Phil works and Amy takes the boys to practice or some combination thereof.

We saw Dylan’s hospice doctor this week. Dylan continues to eat by mouth, and enjoy it. However, he has been vomiting a lot this week, and we hope it’s a virus versus a negative trend in feeding. Dylan just had another round of Botox for the tightness in his hamstrings and it really helped a lot.

We have BIG HAPPY NEWS!! Some of you will be shocked (and possibly horrified) at this thought, but others will know the peace and hope it has given us over the last year. We are adopting a baby girl from Guatemala. We started thinking about our family and our future and possibly another child back in late 2005. We struggled with the decision since it is so monumental. We felt it was unfair to Dylan to live as though we were waiting for him to die. We felt that Dylan deserved the chance to be a big brother and to participate in our complete family, however that might eventually look. It took us the better part of a year, much prayer and some counseling from Hospice to decide to proceed with having another child. We received Dylan’s terminal diagnosis almost THREE YEARS ago. We feel strongly that life is worth living and this is how we want to do it.

The question then became how to proceed to have the best likelihood of having a healthy child. We absolutely, positively had no intention of having another child together, since it would have a 25% chance of being affected with Krabbe. We would never take that chance for the child or our children or ourselves or our marriage. We decided that adoption was the way to proceed. We barely even considered domestic adoption, because the birth mothers choose the family for their baby and we felt we would never be chosen because of Dylan’s illness, not to mention our advancing ages (because ONE of us is over 40!). We settled on international adoption. We chose Guatemala for many reasons, not the least of which is that the travel is short and we are not both required to travel. Traveling to China for 2 weeks or Russia for 5 weeks was out of the question. The babies from Guatemala are generally healthy and given up for adoption due to the extreme poverty in that country.

We started the whole paperwork / Home Study / Dossier process in July 2006! For some reason, the referrals of baby girls just stopped coming to our agency. But Finally - - - - - last month we received the referral of our baby girl. She was born on June 30, 2007 and we have named her Sophie Arabella. Arabella means “answered prayer”. She is currently with a foster mother (Senora Bety) in Guatemala. It takes about 10 months to complete the adoption process and actually bring her home. But we have received 2 sets of photos and should receive photos and updates monthly until then. We just sent down a gallon zip lock bag (that’s the limit) full of gifts. Amy will actually get to go to Guatemala to visit Sophie about ½ way through the process. Amy will also be the one to pick her up when the adoption is complete, since we do not feel comfortable both leaving the country with Dylan at home.

All that to say, we are very excited for the first time in a very long time. Nothing can take away our grief and sadness, but at least we can have some additional joy and hope that we did not have before.

Thank you for your love and support. Please continue to pray for the following specifics:

+ For Dylan’s miracle, to restore his health.
+ For Dylan’s comfort re: seizures and vomiting.
+ For rest and sleep for Dylan and Amy.
+ That Dylan will continue to be comfortable with Heather.
+ For Dylan, that he will not suffer with pain or fear.
+ For Sophie in Guatemala, that the process will go smoothly and quickly and that she will have the best possible love and care in her foster home.
+ For our family, that we will stay strong, stay together in our decision making, and that we will see Joy in our lives.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. The prayer pager number is 1-865-701-2794.

Continuing to Pray for Dylan, with Faith, Hope and Love,
Phil & Amy

Thursday, May 24, 2007

Dear friends and family -

For those who don’t see us very often, it must seem like the unthinkable has happened when we haven’t updated for so long. We apologize for the delay.

How is Dylan? He continues to have the bedtime seizure/spasms that last all night. It happens about once/month. We haven’t found a medicine that will stop it once it starts. Amy is always a Zombie the next day from not sleeping. We tried the Botox for Dylan’s hamstrings in early April. It really helped. The tightness is not totally gone, but we are hoping it will continue to get better as he is loose enough to do more stretching. We met a pediatric neurologist (Dr. Deron Sharp) that we really liked and can continue to use as a resource. Dylan also had another cavity filled this month. He handled it pretty well but we are on pins & needles which makes it seem even longer than it was.

Dylan used to vomit every 3 weeks or so, but it has been much more frequent the last couple months. He did it at Jackson’s baseball game recently. When that happens in public, we are quite skittish about taking him out with us for awhile (like to church…), so one of us ends up staying home with him more. We still take him to the ball fields because it doesn’t matter as much if he vomits outside. We have what we call the “vomit kit” in our car for when it happens – towels, paper towels, clothes change for Dylan and Amy. However, Phil is much more likely to get vomited on than Amy. He should be much Less likely to be on the receiving end since he’s working all day, but apparently Dylan saves it up for him. Heather has become quite adept at “catching” it so no clothes change is necessary. Enough about the vomit - - -

We have been covered up in baseball for the last 2 ½ months. Phil and Amy enjoy it as much as Jackson and Conner. EWA baseball has been a “safe” place for us to be. EWA did the benefit for Dylan in 2005 so everybody knew about Dylan and we weren’t asked a lot of questions. It’s also outside, so we have been less concerned about Dylan’s crying and/or vomiting. However, we left one of the boys away games to drive home and drove past the cemetery where Dylan will be buried. We knew it would be on the way, but had no idea it would feel like such a sucker punch to the gut to just happen by. We were just out enjoying a fun baseball game – they won – then had the abrupt descent from the “regular” family we want to be, to the grieving one that we actually are. On the next trip by, Conner commented on the cemetery but didn’t realize it was Dylan’s. Jackson recognized it right away. We don’t want ANY of our children to go through this.

The parents at our school are encouraged to write a letter to the principal describing what type of teacher our children need. Each year Amy does this thinking “this will be the year that the boys will grieve their brother’s death at school and we need a teacher with the utmost compassion.” It is really appalling to have to put that on paper to the school principal.

School gets out this week and summer is upon us. The boys start swim team next week and the 2 week overlap with baseball will run us ragged. Phil has been in town since our last update except for a week long trip to London and Luxembourg. Amy has still been having a horrible time sleeping, but finally has her own personal doctor who is on the case.

Our Sunday School class disbanded so now we are somewhat adrift. We weren’t very active, but had been with some of the same people for almost 10 years. It seemed like too much history to give up. They have been an amazing source of help to us over the last 2 ½ years. Thank you to each and every one of you guys!!

Jackson made the decision to accept Jesus as his personal Savior. He went through the New Christian’s class at church and will be baptized in the next few weeks. We are excited about that.

Thank you for your love and support. Please continue to pray for the following specifics:

For Dylan’s miracle, to restore his health.
For Dylan’s comfort re: seizures, muscle tightness, and transitions to new positions.
For Conner’s stomach problems. We are tapering off of the Prevacid and cutting out milk, but will do the Endoscopy in July if he is not better.
For rest and sleep for Dylan and Amy. (EXTRA attention on this one, please!)
That Dylan will continue to be comfortable with Heather.
For Dylan, that he will not suffer with pain or fear.
For our family “togetherness” this summer, that we can make the most of our time.
For our family, that we will stay strong, stay together in our decision making, and that we will see Joy in our lives.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. The prayer pager number is 1-865-701-2794.

Continuing to Pray for Dylan, with Faith, Hope and Love,
Phil & Amy

Wednesday, March 7, 2007

Dear friends and family –

Two years, five months, and three days, and counting (since Dylan’s diagnosis). But thankfully, counting more days with Dylan. We had Dylan’s 3rd birthday celebration in January. The weather did not cooperate for a brief park outing, so we met at the Mall. We had birthday cake (which Dylan liked) and Dilly Bars (Ice cream bars from Dairy Queen in honor of “Dylie”, which Dylan did NOT like). All the kids rode the carousel and Dylan seemed to enjoy that. The kids then played at the little play area in the mall, and we stress “little” because you apparently have to be about 2 feet tall to play in it and we got kicked out because of all our kids have gotten SO big. We then released 6 dozen balloons into a dreary January sky. It was short and sweet, and honestly, we were just glad to have it over. To give too much thought to the whole situation would have been to “lose it” in the middle of the mall. All that to say, we have posted some birthday photos on the website.

Our nephew Travis, is a senior at F.J. Reitz High School, in Evansville Indiana. As his senior project, he selected a cause close to all of our hearts and is raising funds for Hunter’s Hope Foundation (the organization created by Jim Kelly and his wife to fund research for Krabbe disease). Travis actually wrote and recorded 6 original songs on a demo CD that he is selling for $10 each to benefit Hunter’s Hope. Phil’s brother & his wife paid for Travis to have some professional recording studio time to help make a quality finished product. The reproduction cost is about $2 each and only $1 for packaging & shipping, so approx. $7/unit will go to Hunter’s Hope. For those of you who receive this email (as opposed to those who read on the website), there is an attachment with more information on the CD. So, if you would like to support a great cause (Hunter’s Hope) and show a teenager (Travis) that goodness abounds in the world, here’s how you can do it: You can mail Travis a check to the following address: Travis May, 328 Key West Dr., Evansville, IN 47712. If you prefer to pay by credit card, you can do so by going to the following web page (it will ask you to set up a Google account if you don’t already have one): http://base.google.com/base/a/1526325/D8686075280939661432
If you do purchase a CD and enjoy it, please feel free to let Travis know (his email is TMayMusic@gmail.com). He put a lot of time and effort into this songwriting/recording project in honor of Dylan.

We recently found out that Phil’s dad has a form of blood cancer called Waldenstrom's macroglobulinemia. The doctors believe that through chemotherapy and blood treatments, that the disease can be kept in check and his energy level (which is what prompted investigation initially) seems to be improving already. He is now almost 76 years old and newly remarried. He was such a saint in taking care of Phil’s mom, Millie for 10 years after her stroke. We just hope and pray for some years of happiness & health for him now.

As for changes in Dylan – we continue to have problems with his poor little teeth. The seizures continue periodically and are more like full-body spasms/startle reflex that make him cry out in fear or pain. They usually last all night when they happen. He is also having severe tightness in his hamstrings. Our nurse actually suggested Botox to release that muscle, so we will look into that. He is getting bigger and looks much older. We have gotten him to smile a crooked little smile, if he is in the right mood at the right time (usually a couple of times each week). We think this is possible due to changing from Phenobarbitol to Topamax for seizure control. At any rate, we’ll take whatever interaction he can give us. Since our last update, we have a new physical therapist and a new hospice nurse, and added two cranial sacral therapists to Dylan’s repertoire of services (kudos to hospice for being willing to consider atypical things). Needless to say, we are scheduled out the wazoo.

Speaking of scheduling – Jackson joined a year round swim team. Now baseball is starting for both boys. March will be crazy with 3 practices/week times 2 kids, plus 2 swim practices a week for Jackson. It seems a little insane, but may actually be what keeps us sane. At least we continue to get up in the morning. Amy has a t-shirt that says “I’m out of bed and dressed. What more do you want?”. Seems appropriate.

Since our last update, Phil has been to France for a week, and Miami for 4 days. Phil had strep throat and Conner had the Flu and Heather was sick too (all in the past 2 weeks). Amy had the worst month of sleep of her entire life. There was actually one night that she never went to sleep, after laying awake for 9 hours. She used to think being awake for 2-3 hours in the night was bad, but everything is relative. It has gotten better in the past week or two, but now expectations are much lower. It turns out she can sleep just fine without Dylan in the room, but the constant noises are a torture for a light sleeper.

Thank you for your love and support. Please continue to pray for the following specifics:

+ For Dylan’s miracle, to restore his health.
+ For Dylan’s transition onto new medication, that the medication will keep his seizures under control, and for the discomfort related to his hamstrings.
+ For Phil & Amy to continually agree, as we have to make decisions regularly that no parent should have to make for their child.
+ For Conner’s stomach problems. We had to reschedule his Vanderbilt follow-up to April because he had the flu. Symptoms are manageable with double dose of Prevacid at $200/month!
+ For rest and sleep for Dylan and Amy. (EXTRA attention on this one, please!)
+ That Dylan will continue to be comfortable with Heather.
+ For Dylan, that he will not suffer with pain or fear.
+ For our family, that we will stay strong, stay together in our decision making, and that we will see Joy in our lives.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. The prayer pager number is 1-865-701-2794.

Continuing to Pray for Dylan, with Faith, Hope and Love,
Phil & Amy

January 13, 2007

Dear friends and family,
Our email group for our Dylan updates got deleted somehow, so we have started to recreate it from scratch. Some new people will be receiving this, and there will be others we have no way to resume contact with, for which we are sorry. Feel free to forward this to someone who cares and if you’re looking at the website and want to be added, just email us.

Sorry for the great length of this email.
Christmas is over now, and the children are back at school. Our Christmas season went as well as it could have under the circumstances. We had our traditional Christmas Eve service at church, then a quiet Christmas day at home with the boys. We traveled to Evansville for 2 nights the day after Christmas. It was good to spend some time with the entire May side of the family. Jackson and Conner absolutely worship their teenage cousins, and thankfully, those kids are all great examples of how to grow up in this difficult world. Our friends, the Collins family, visited from Knoxville for New Year’s.

Time after time over the last few months, we have found ourselves in situations we never dreamed of being in. We had another unexpected Christmas with Dylan, and New Year’s, and his 3rd birthday is coming up next week. This is actually the 4th calendar year that will be affected by our tragedy. Amy went to bed before midnight on New Years, just as an immature snub to the new year and what it has to offer our family. We are so grateful to have Dylan with us, and grateful for each individual event that he can share with us, but constantly thinking “was that the last one?”.

Conner prayed before dinner recently and said “Please heal Dylie and don’t let Dylan die” and went on to something else and came back to ask again “Please don’t let Dylan die, let him live a long time” and by the time he came back to plead for Dylan’s life a 3rd time, Amy had found an urgent need that suddenly required her attention in the office as soon as the prayer was over. Heather, who was actually holding Dylan at the time and couldn’t get up, just had to use her napkin for the tears. So this is our not-so-new “normal”, if you can call it that, and something that our children carry around on a daily basis. Jackson certainly understands intellectually, but seems to hold in the sadness. It makes us worry that we are all aware, but still to be caught totally off guard when the time comes. Not that there’s a way to be prepared for it, but the continual dread of it is so draining.

James Dobson wrote an excellent book (which we haven’t yet finished, so you may hear more) entitled: When God Doesn’t Make Sense. Here are a few excerpts:
• “Clearly, unless the Lord chooses to explain Himself to us, which often He does not, His motivation and purposes are beyond the reach of mortal man. What that means in practical terms is that many of our questions-especially those that begin with the word why-will have to remain unanswered for the time being”.
• “…there will be times in every person’s life when circumstances don’t add up-when God doesn’t appear to make sense.”
• “Even in the most terrible of circumstances, however, God’s plan is wonderful because anything in harmony with His will ultimately “wors for the good for those who love Him, who have been called according to His purpose” (Romans 8:28)”.
We, however, find ourselves asking God to change his plan, to accomplish His ultimate objective in some other way (which He is clearly capable of doing, just as He is capable of completely healing Dylan).
• “It is an incorrect view of Scripture to say that we will always comprehend what God is doing and how our suffering and disappointment fit into His plan. Sooner or later, most of us will come to a point where it appears that God has lost control - or interest - in the affairs of people. It is only an illusion, but one with dangerous implications for spiritual and mental health. Interestingly enough, pain and suffering do not cause the greatest damage. Confusion is the factor that shred’s one’s faith”.
• “I am convinced that these and other biblical examples were provided to help us understand a critically important spiritual phenomenon. Apparently, most believers are permitted to go through emotional and spiritual valleys that are designed to test their faith in the crucible of fire. Why? Because faith ranks at the top of God’s system of priorities. “

The below is a precious little story, which is only one of the myriad of ways to think about suffering and pain.

The Brave Little Soul
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all.

Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.” God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Happy 3rd Birthday, sweet Dylan. We are so grateful to have you in our lives.

Thank you to all the people who have responded to our family’s pain and made the world a better place.

Please continue to pray:
For Dylan’s miracle, to restore his health – and what a celebration would take place if God chooses to answer THAT prayer.
For Dylan’s transition onto new medication, that the medication will keep his seizures under control, but that it won’t impact his personality and that we will get to see his beautiful smile again.
For Phil & Amy to continually agree, as we have to make decisions regularly that no parent should have to make for their child.
For Conner, as he has been struggling with stomach pain for months. The pain is better, but there are still symptoms and an Endoscopy is still a possibility.
For rest and sleep for Dylan and Amy.
That Dylan will continue to be comfortable with Heather.
For Dylan, that he will not suffer with pain or fear.
For our family, that we will stay strong, stay together in our decision making, and that we will see Joy in our lives.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. The prayer pager number is 1-865-701-2794.

Continuing to Pray for Dylan, with Faith, Hope and Love,
Phil & Amy

Tuesday, December 12, 2006

Dear friends & family –

I know it has been quite a while since our last update. Amy normally writes the updates but I’m (Phil) taking the keyboard this month. Keeping all of you up-to-date on Dylan is very important to us. We made a decision over 2 years ago to be very public about Dylan’s disease and to seek as much support and prayer as possible. We know that was the absolutely correct decision and we have received overwhelming support and prayer constantly since deciding to publish Dylan’s website. Writing the updates; however, is very difficult, as we have to commit to paper the changes we continue to see in Dylan and some of our struggles in dealing with this horrible disease.

Someone very close to me once asked “Is there any joy or happiness in the house now, or is it simply sadness and depression?” That was a very realistic question. There most certainly is some semblance of normalcy in our household. Happiness may be a bit too strong. We do function and laugh and talk about mundane things, but the reality is never too far from the surface. As Amy said in the last update, we made a conscious decision (after quite a few months) to continue functioning as “normally” as possible and to spend as much time together as a family as possible. That effort sometimes proves difficult. We do take Dylan out with us periodically, even seeing a movie together with the whole family during the boys fall break from school. We don’t spend every day discussing Dylan’s disease. What is normal to us, probably isn’t normal for most. We still spend many hours a day holding Dylan, but we also try to keep active with Jackson and Conner. For the most part, only one of us can be “productive” at a time, which makes things rather slow-going, unless Heather is able to hold Dylan.

We are blessed that Dylan has been more comfortable with Heather holding him more often and for longer periods of time. Heather has been such a huge blessing for our family, even allowing Amy and I to go to a movie together this week for our first “date” in probably a year.

The past few weeks have been very tough. Dylan has been dealing with a lot of congestion and several high fevers, one of which got up to 103.5. Dylan has been on an antibiotic for bronchialitis, which we are trying to keep from moving into pneumonia. His seizure activity (minor, not full-blown) continues in spite of the medication he is taking to curb those seizures. We have just changed to a new medication in the hope that we can keep the seizure activity minimized without keeping him sedated as much as he has been over the past few months. It’s too soon to tell, and more likely than not, the changes in his personality are due to progression of the disease rather than the medication. Regardless, we wanted to try something new to see if he handles that better and perhaps can get some of his interaction back. We have also been through some very difficult discussions and decision making with the hospice doctors with respect to Dylan’s treatment now and in the coming months.

There have been a lot of big events since we last wrote – Halloween (Dylan was an adorable panda bear and the boys were army soldiers), Thanksgiving (which we spent with our friends Lisa & Mike). We have just celebrated Jackson’s ninth birthday. The Christmas season is on us, then Dylan’s third birthday in January and Conner’s sixth birthday in February. We pray that Dylan will stay “healthy” during this season, as we want this time of year, probably more than all others, to be a time of celebration – for the birth of Christ, and the birth of our 3 beautiful boys.

Thank you all for your prayers. We feel them and we know you are out there praying for us. Please specifically pray:

+ For Dylan’s miracle, to restore his health – and what a celebration would take place if God chooses to answer THAT prayer.
+ For Dylan’s transition onto new medication, that the medication will keep his seizures under control, but that it won’t impact his personality and that we will get to see his beautiful smile again.
+ For Amy and I to continually agree, as we have to make decisions regularly that no parent should have to make for their child.
+ For Conner, as he has been struggling with stomach pain for months and may have to undergo an Endoscopy to try to identify the issue.
+ For rest and sleep for Dylan and Amy.
+ That Dylan will continue to be comfortable with Heather.
+ For Dylan, that he will not suffer with pain or fear.
+ For our family, that we will stay strong, stay together in our decision making, and that we will see Joy in our lives.

Blessings to you all for this Christmas season. We trust that all of the “busyness” of the season won’t overshadow the focus on God’s gift to man, and that we will all treasure our family and friends, the only gifts that really matter.

Phil & Amy

Wednesday, October 4, 2006

Dear family and friends –

It was exactly two years ago today that our world stopped turning. We left the office of the geneticist at Vanderbilt on a beautiful sunny October day, like today, wondering how everybody is just driving around like nothing happened. The sun was still shining, cars were still moving, people were working, playing and eating out. We wondered how all that was possible when our world had just crashed down on top of us. I have included the update from that day below, for those of you who were not involved with us at that time. Dylan was 8 ½ months old at the time. He is now 2 years and 8 ½ months old.

We focused for a long time on making the most of every minute together, because it might be the last. We expected Dylan to only be with us a matter of months (at that time we were told it could be 5 to 7 months until his death). We discussed death with our children on a daily basis, and still do. At the dinner table, the boys will pray, as though this is normal - - - “Please don’t let Dylie die”. It is all we can do not to choke or cry, and then eat dinner. When Dylan was almost 2 years old, we bought his cemetery plot. Can you even imagine that? We had to “shop” for a cemetery where we could envision ourselves visiting our son’s grave. We had to go through the thought process of how many plots to buy – we would, of course, want to be buried near him. But what if something happens to another family member? We ended up buying a number of plots in the corner of a tiny country cemetery, so we can all be “together” when the time comes.

Eventually, for our sanity sake, we had to consciously decide to continue to LIVE. We stopped staying home all the time and tried to function as a family. Jackson and Conner have played 3 seasons of baseball, 2 seasons of swim team, and 1 season of basketball (for Jackson). We take Dylan to the games and endure the questioning stares of people who wonder what is wrong. So now, instead of sitting around waiting for Dylan to die and postponing our lives until that is over, we try to continue life with our immediate family, one of whom has a terminal disease with an unknown timeframe. It’s a different way to endure the same situation. But in fairness to Dylan, we thought we must LIVE while he is here, not just wait for him to die. It wouldn’t be fair to him or to the other boys to do otherwise.

I recently read the book “Tuesdays With Morrie” that had been on the shelf for several years. If you haven’t read it, it’s about a man (Morrie) who dies of ALS (Lou Gehrig’s disease), which has a similar progression to Krabbe. I knew it would be painful, but I wanted to know what an adult would say about what was happening to his body (regression and deterioration). Unfortunately, Morrie did not have a relationship with God, so there is a huge element missing for him. However, here are some quotes, some from Morrie, and some from his friend Mitch, which really hit home for me - - -

“When all this started, I asked myself, ‘Am I going to withdraw from the world, like most people do, or am I going to live?’ I decided I’m going to live – or at least try to live – the way I want, with dignity, with courage, with humor, with composure. There are some mornings when I cry and cry and mourn for myself. Some mornings, I’m so angry and bitter. But it doesn’t last too long. Then I get up and say, ‘I want to live . . . ‘”.

“So many people walk around with a meaningless life. They seem half-asleep, even when they’re busy doing things they think are important. This is because they’re chasing the wrong things.” (This is where Morrie should have made the natural leap to realizing that living for Jesus Christ was the meaning he was looking for, but he did not).

“Normally, when you lift someone, you expect their arms to tighten around your grip, but Morrie could not do this. He was mostly dead weight, and I felt his head bounce softly on my shoulder and his body sag against me like a big damp loaf. Holding him like that moved me in a way I cannot describe, except to say I felt the seeds of death inside his shriveling frame, and as I laid him in his chair, adjusting his head on the pillows, I had the coldest realization that our time was running out.”

“’Everyone knows they’re going to die,’ he said again, ‘but nobody believes it. If we did, we would do things differently.’”

“’You strip away all that stuff and you focus on the essentials. When you realize you are going to die, you see everything much differently. Learn how to die, and you learn how to live’”.

“The day he learned that he was terminally ill was the day he lost interest in his purchasing power”.

“He told Koppel he wanted to die with serenity. He shared his latest aphorism: ‘Don’t let go too soon, but don’t hang on too long’. Koppel nodded painfully. Only six months had passed between the first “Nightline” show and this one, but Morrie Schwartz was clearly a collapsed form. He had decayed before a national TV audience, a miniseries of death. But as his body rotted, his character shone even more brightly.”

“You live on in the hearts of everyone you have touched and nurtured while you were here. Death ends a life, not a relationship.”

“I am a different self now. I’m different in my attitudes, I’m different appreciating my body, which I didn’t do fully before. I’m different in terms of trying to grapple with the big questions, the ultimate questions, the ones that won’t go away. That’s the thing you see. Once you get your fingers on the important questions, you can’t turn away from them.”

“He wanted to go serenely, and that is how he went”.


Everything we see and experience now is through a different set of lenses. Life will never be the same for us. Maybe, ultimately, that is a good thing, but we would give anything in the world to change it and go back to 2 years ago today and receive a different answer. I sometimes think about the last weekend we had together before “we knew”. The doctor knew the diagnosis on Friday 10/1/04, but we were not told until Monday 10/4/04. That weekend was spent worried sick, but yet blissfully ignorant of what was to come. Our worst nightmares just weren’t as bad as this disease. All pictures and events are now measured in “before we knew” and “after we knew”. I am extremely grateful to be holding Dylan on my lap as I type this, smelling his sweet baby shampoo curls. We are thankful that the doctors were wrong – Dylan has lived way past the “13 month average life expectancy”. We are thankful for this unenviable life as we know it, because the alternative is even more painful.

We want to take this opportunity to thank each and every person who has helped us along this marathon of a journey. There are so incredibly many of you, and you have each touched us deeply and served in such a way to further God’s kingdom. We are shocked and humbled by the length and depth of the support we have received. If you know of someone who prays for us, please forward this “thank you” to them also, as prayer can be the only thing that has brought us this far. If you would, please continue to pray for us - - -

+ For Dylan's MIRACLE to restore his health.
+ That Dylan will not suffer with pain or fear or seizures.
+ For wisdom for all medical decisions we face weekly and will be faced with in the future.
+ For Phil's back problem to heal (it is definitely better, but he still has a good deal of pain regularly).
+ For Jackson and Conner, that we are able to give them everything that they need.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. The prayer pager number is 1-865-701-2794.

Continuing to Pray for Dylan, with Faith, Hope and Love,

Amy & Phil



OUR UPDATE WRITTEN ON OCTOBER 4, 2004.

Hello loved ones -

We are writing with completely broken hearts. We are not sure how to get through this email, let alone farther than that.

Today we saw the geneticist (Dr. Phillips) at Vanderbilt with Dylan. We spoke to Dr. Burcher in that office last week. She said that several more of the tests had come back normal, but the ones that weren't back would take 3 more weeks. We were completely unprepared for the news that met us today. One of the tests had come back with the diagnosis for Dylan. He has Krabbe (pronounced Crab-A) Disease. This is an excerpt from the document were were given:

"Krabbe disease is characterized by infantile onset with progressive neurologic deterioration and death usually before two years of age. Individuals with the infantile form appear to be normal for the first few months of life but develop extreme irritability, spasticity, and developmental delay before six months of age. Regression in psychomotor development results in feeding difficulties and marked hypertonicity, eventually leading to a decerebrate state with no voluntary movement. Death from infection can occur at any age.
Krabbe disease is inherited in an autosomal recessive manner. In each pregnancy, couples in which both parents are carriers have a 25% risk of having an affected child, a 50% risk of having a healthy child who is a carrier, and a 25% risk of having a healthy child who is not a carrier. A carrier frequency of one in 150 may be used in the general population. "

Tomorrow we go to have blood drawn on the whole family. We (and Dr. Phillips) want the test repeated on Dylan. We also need to determine that Jackson and Conner are not affected (it could be "late-onset form", but the doctor believes we would have already seen signs). The boys will need to know if they are carriers, as this could affect their children if they marry a carrier.

The doctor gave us no hope. He is putting us in touch with the 2 leading researchers on the disease. There is an experimental bone marrow transplant that they are testing, but one of the researchers said that it is too late, since the symptoms have already on-set. They are apparently working with children that were diagnosed pre-birth (due to knowledge that siblings had the disease). Dr. Phillips also advised us that there are major complications with bone marrow transplants. He also cautioned us that the things we would find on the internet could lead to false hope. He prefers to put us in direct contact with the leading researchers.

Dylan is such a beautiful, sweet baby. Our hearts break every time we look at him. He just smiles back at us as we sob. We are railing at the injustice of it all. We have no idea how to get through this. Driving home today, it was bizarre to see people carry on with their day and their lives, when our lives had just come crashing down.

So far, we have told Jackson and Conner only that we have found out that Dylan is very sick, and he will never be strong like they are and able to sit up and walk.

Please pray for us:

+ Dylan needs a complete and total MIRACLE. I know our God is an awesome God and He can do whatever He wants. He is the Creator of heaven and earth, and all of us and Dylan. We are just begging for His answer to be YES, I WILL.
+ That Jackson and Conner will be completely unaffected and will not be carriers of the disease.
+ That Jackson and Conner will not be afraid, or feel guilty, or left out.
+ That we will have the strength to bear what no parent should ever have to bear.
+ That in the coming days/weeks, Dylan will not be in pain, will not realize what is happening to him and be affected as little as possible by all of the potential directions this horrible disease can take.

We thank all of you for your prayers, your well wishes and your expressions of concern. If you write or call/leave a message, please know we appreciate you, but may not be able to talk at the moment. We are trying to stay strong for the other boys, but it is really impossible right now.

On our knees in grief,

Phil & Amy

Friday, August 25, 2006

Dear Friends and Family -

This is the longest we have ever gone without an update. Sorry about that. We just kept waiting, hoping to be in a place of stability to give an update on Dylan. The seizures have continued. Finding the right dose of anti-seizure medication has been very hard. If it’s not enough, he still has seizures. If it’s too much, he’s too groggy. When he’s too groggy, he can’t or won’t drink. It’s shocking how much experimentation/trial and error there is in the “practice of medicine”. Apparently that’s why they call it “practice”. The hospice doctor warned us that “some people” blame changes in their loved ones on the medication, when it’s actually progression of the disease. We don’t know which it is, but the effects are devastating to watch. I can’t even type this without crying, but it appears that Dylan’s smiles and laughs, that we have cherished and lived for, are almost gone. Whether it is the disease or the medication, we will likely never know.

The summer passed too quickly. Jackson and Conner were on the swim team. Jackson had a banner year. Bear with us while we pat him on the back for a minute. At the county Championship swim meet, his medley relay team tied for first place!! His free style relay came in 2nd place. In the individual events, he got 15th in the Breast Stroke, 10th in the Individual Medley (swimming all 4 strokes) and 6th in the Butterfly. He is quite proud of his medals. Conner also did extremely well as compared to the other 5 year olds (but the 6 year olds beat him).

Just like last year at this time, the ants came back. This time they found the pantry, which was incredibly frustrating. Thank God for Heather, who cleaned it all up. Our exterminator knows us quite well and he rushed right over. It turns out they had made a home under the house, just like last year, which supposedly rarely happens.

Conner started Kindergarten this week. He has only been 2 days for ½ day so far, and Amy has been too busy to be sad about it. Next week he starts full-time and that will be very hard. Amy and Dylan will be at home in a much quieter house, without our little sunshine to brighten the day and keep us occupied.

Phil has been working in a new business the past few months. He has formed a partnership with two former Sony executives. It has taken forever to get the legal stuff finalized, but at long last, they are finally almost there. The business is called R2M Music and they are building a music publishing company through acquisition of other song catalogs and companies. It has been quite exciting for Phil to have something positive to focus his professional energy on. He hasn’t been this professionally stimulated since his untimely departure from Sony over three years ago. It’s great for him to enjoy work again. He still has to travel some, but when in Nashville he is working from a home office, so around and involved with the family more than in the past.

We totally moved around our home office this month. It is worth mentioning because we realized it is the first project we have done in 2 years that wasn’t absolutely essential. We did it because we wanted to and it felt great. It is such a small thing in the scheme of things, but it makes us realize how little control we have had over our lives for almost 2 years. We are just trying to find a way to live, and actually LIVE, in the midst of our tragedy.

Thank you for continuing to pray for us. Our requests are as follows:
+ For Dylan's MIRACLE to restore his health.
+ For wisdom and God’s direction as we make decisions about our future.
+ That Dylan will not suffer with pain or fear.
+ That Dylan’s seizures will be prevented with the right dose of medicine to keep him from being drowsy.
+ For wisdom for all medical decisions we will be faced with in the future.
+ For Phil's back problem to heal (it is definitely better, but he still has a good deal of pain regularly).
+ For protection against depression.
+ For our marriage.
+ For hope for the future as we try to envision anything that will give us hope.
+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often.

The prayer pager number is 1-865-701-2794. It is comforting for us to hear it and know that people are still praying and caring for our family.

Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

Monday, June 19, 2006

Yesterday was Father’s Day. Phil left at 4:30 in the morning for London. So much for Father’s Day . . . .

On the one hand, we “spoke too soon” last month by saying things were better. On the other hand, it was nice to be able to speak relatively positively. A few days after that update, things went to pot. It has really been a terrible month. Dylan had a major seizure on May 19th. It was horrible. We called our hospice nurse, Kiersten, and she came and sat with us for over 3 hours until it was under control. Poor little Dylan – he was given more medication that day than he’d ever had in his life. He was groggy for about 5 days – in part from the drugs, and partly just trying to physically recover. The day of his seizure, we got a new hospice doctor – our fourth. We rarely see the doctors – but our nurse Kiersten has been a constant for over 18 months.

We had to put Dylan on a maintenance dose of anti-seizure medication. At this point, we realized that there were other symptoms that could have been seizure activity. Dylan’s feet have often had tremors. He also started waking from a nap or at night with a terrible cry and trembling all over. We hoped the seizure medication could help these other symptoms. Exactly two weeks after the first major seizure, Dylan had another one. At least this time, we weren’t quite so scared and had the right medication on hand. We set a meeting with the new hospice doctor to determine the proper dose of anti-seizure medication, since it obviously had not prevented it. At that meeting, we found out that our nurse, Kiersten, “was no longer with Alive Hospice”. We were devastated. It had taken us a year to finally find a “Captain of the Ship” for medical purposes, and she was it. And then she was just gone, with no explanation. All we know is that she didn’t leave us of her own accord.

For those of you who we should have told personally about the seizures, please accept our apology. It is so hard to talk about, and often when we are out, we avoid discussing the pain. Each new stage of this disease has its own mourning process. We mourn what is happening to our baby’s body, and what will never be for him and for us and for the big boys. Jackson, in particular, seeks relationship with little boys around the age of two. He carries them around on his back, “baby sits”, and reads them books. It just breaks our hearts to see what he is missing with his own little brother and how he craves it and tries to fill the need elsewhere.

Sleep has been elusive. Dylan had been sleeping well for quite awhile, but the frequent waking is back. Amy is usually (but not always) the one with him, and the more times he wakes, the more chances there are that she will stay awake for 1-3 hours. When that happens, there is a snowball effect on the next day. Needless to say, it is not a positive effect.

When we first received Dylan’s diagnosis, over 20 months ago, Phil and I thought we could just “meet on the other side” of our grief and be ok in our marriage. It has just been too long. We can’t just co-exist. We have to focus on our marriage to make sure we survive as a family. Phil –You are a wonderful father and husband, and I could not survive without you. I love you. We WILL survive together.

On a happy note, Jackson and Conner’s teams both won their baseball championships. It was a very exciting day and a welcome reprieve. Baseball is over, and now we’re on to swim team. Jackson went to cub scout day camp, and they both went to Vacation Bible School last week. We are looking forward to getting into a summer routine, now that the camp and VBS weeks are over.

Thank you for continuing to pray for us. The prayer pager goes off in the middle of the night – Amy hears it shockingly often when she gets up in the middle of the night.

+ For Dylan's MIRACLE to restore his health.
+ For wisdom and God’s direction as we make decisions about our future.
+ That Miss Betty will still be able to care for Dylan to give us relief.
+ That Dylan will not suffer with pain or fear.
+ That Dylan’s seizures will be prevented with the right dose of medicine to keep him from being drowsy.
+ For wisdom for all medical decisions we will be faced with in the future.
+ For Phil's back problem to heal. It has been over 20 months and has improved, but seems to have stabilized at a point that still requires too much medication to live with.
+ For protection against depression.
+ For our marriage.
+ For hope for the future as we try to envision anything that will give us hope.
+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often.

The prayer pager number is 1-865-701-2794. It is comforting for us to hear it and know that people are still praying and caring for our family.

Praying for Dylan, with Faith, Hope and Love,
Amy & Phil

Sunday, May 14, 2006

Dear Friends and Family –

It is Mother’s Day. Love on those precious children. For sanity’s sake, we are kind of ignoring it. It’s hard to describe – kind of thinking about it with ½ my brain and none of my heart. Amy got a beautiful blue topaz ring for Mother’s Day/Birthday. In my mind, it will always be my “Dylan ring”.

I guess we would have to say this has been one of the better months. To be quite honest, it’s because we have been so busy. Life has not been quite so centered around Dylan. However, Dylan has been less fussy and has been easier for Miss Betty to handle when she comes and Heather has been able to hold him a bit more time also. Dylan’s comfort level seems to go in cycles and the past few weeks have been on the better side of the cycle.

We struggled to figure out a family vacation for Spring Break. We just couldn’t figure out a place to go that was good for everybody. Dylan doesn’t like the heat, bright sun, or water. So that pretty much ruled out the beach. We realized one of us would be in the room with Dylan most of the time, while the other one played outside with the boys. We didn’t feel comfortable getting too far away from our healthcare/hospice network after our bad experience in Knoxville a few months ago. We finally decided that Phil would take Jackson somewhere and Amy would take Conner somewhere (at different times, so one of us could be home to care for Dylan). At least then, Jackson and Conner would have some focused attention. Phil and Jackson went to Miami Beach for a few days during Spring Break and had a really good time. Amy and Conner went on a cruise to the Bahamas (with her friend Nicole and her 5 year old son). It was so great to be away, especially for Amy. She felt like she was living someone else’s life. It was hard to come back to the reality of our lives.

April and May have been extremely busy with baseball. Jackson and Conner both have 2-3 games per week and one practice. It has forced Amy out of the house a lot more than usual, which has been a welcome change. We have thoroughly enjoyed the games. Both boys are having fun and the teams are doing well (we have had our share of No-Win seasons in the past). We take Dylan to the games and he does pretty well there. That has worked well, except for the time he threw up all over Amy. We knew enough to have a “vomit kit” in the car, but didn’t realize it would actually need to contain a change of clothes for one of US as well.

Phil has not traveled in many weeks, so that has really helped. Amy received an email from a woman named Iz from our church. She owns the Izabella Day Spa in the Factory. She invited Amy to come in for a day of pampering. It was absolutely incredible!! Amy received a mud wrap, signature facial, haircut and pedicure. The atmosphere and décor were gorgeous. That was an amazing blessing for Amy.

School is almost out. The thought of summer and the kids being home 24/7 while Phil tries to work from home, well, the thought is daunting. Heather has been our life-line. She is the reason we can function on a daily basis. She comes for a few hours in the afternoons during the week. She lends order to the chaos. Without Heather and the meals we have continued to receive (and the help with laundry, yard work, etc – the list is LONG), we would live in a pig sty, surrounded by pizza boxes and fast food containers.

Amy recently had a conversation with the children’s grief counselor. Amy said “It’s just so strange to think that when people see us out, they can’t tell that something is so very wrong”. The counselor thought that Amy meant strangers couldn’t tell that Dylan was sick, which would be a big case of denial. What Amy meant was – you can look at US and not know the grief we feel. Makeup covers a multitude of sorrow. It’s like being seen, but not really SEEN. Phil and Amy have been seeing a grief counselor at Hospice lately. It is good to talk to someone who has experience with the magnitude of our stress and sorrow. A book in the counselor’s office is titled “A Broken Heart Keeps Beating”. That is so true. And you keep getting up each morning and keep putting one foot in front of the other, until yet another day is over.

Thank you for not forgetting about us. We appreciate it more than we will ever be able to express. Please continue to pray for these areas:

+ For Dylan's MIRACLE to restore his health.
+ For wisdom to know how to live our lives WITH Dylan and the uncertainty that is present.
+ That Miss Betty will still be able to care for Dylan to give us relief.
+ That Dylan will not suffer with pain or fear.
+ The Dylan’s eyesight will stabilize and get better. (and if it’s not going to get better, that our hearts will be prepared to accept it).
+ For wisdom for all medical decisions we will be faced with in the future.
+ For Phil's back problem to heal on its own It has been over 18 months and has improved, but seems to have stabilized at a point that still requires too much medication to live with.
+ For protection against depression.
+ For our marriage.
+ For hope for the future as we try to envision anything that will give us hope.
+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often.

The prayer pager number is 1-865-701-2794. It is comforting for us to hear it and know that people are still praying and caring for our family.

Praying for Dylan, with Faith, Hope and Love,
Amy & Phil

March 31, 2006

Dear Friends –

It’s way past time for an update. As for Dylan – he has had many bouts of crying lately, lasting up to 2-3 hours, sometimes many days in a row. It is so hard to figure out how to help him. Sometimes it seems to be pain, but irritability is a major symptom of the disease. We are trying different medications, but it all seems to be trial and error. As a result, Miss Betty is having a harder time keeping him happy and often even both of us do as well. We do a little test when he’s crying – if Amy takes him and he stops crying, then it wasn’t pain. Dylan is 2 years old now. You can imagine how spoiled rotten he is, but there really isn’t any other choice. The fact that he lets his opinion be known is age-appropriate behavior, and is actually quite surprising that he can do that at this stage of the disease. All that to say, our “respite” time is getting to be less and less. If we lose the ability for Miss Betty to keep him happy, we will be so much worse off than we have been up to now. For the past months, we have been able to periodically get away (as a couple) to see a movie or grab dinner together. It seems that time is coming to an end. As for the question “How is Dylan?” – it depends on how you compare it. He’s alive, so that is obviously more than we expected. Is he the same? As compared to yesterday, for sure, but not the same as a few months ago. The decline is slow and painful to watch. His eyesight is the most obvious decline, and the most painful for us to lose. There is much less pleasure in life for him now, since it is hard to stimulate him visually. His hearing is still very good and he often seems content to just hear us and the boys around him.

Master Koh, of Yong In Studios, has been giving Conner Tae Kwon Do lessons for free for almost a year. Master Koh has done this because he is a Christian and he knew about Dylan and he wanted to help. Conner has really blossomed. He went from a white belt, to yellow, to orange, to red, to green, to light blue. Now Master Koh wants Dylan’s medical trust fund to be the beneficiary of his fundraiser event on April 8th. It is at the Yong In Studio in Brentwood. There will be play equipment, face painting, demonstrations, a silent auction, music and more. Tickets are $3/person. We are so appreciative of all that Master Koh has done. We are amazed at the people who will do anything in their power to help us.

This struggle has been tough on our marriage and also on Jackson & Conner. It is hard to spend time together (either as a couple or as a family) as one of us is always holding Dylan. That doesn’t make all activities impossible, but a lot of them are. We need to find a way to live long-term. We have been in the “sprint mode”, then moving into “marathon mode”, but this is longer. This is “swim the ocean” mode. People can do anything for six months. But this has now been 18 months with no end in sight. Our hearts are just a big hemorrhage. We can’t heal when we’re still bleeding; and yet we need some hope for the future. We need a buoy out there in the ocean that we can swim to. Hope is “desire accompanied by expectation of or belief in fulfillment”. It’s not just that you want it, it’s the belief that it will happen. We don’t know even know what to hope for. We have been praying about this and asking God for the buoy, the one that He wants us to have. God is our strength, and we know He will continue to be, but we need some hope for the future of our family. And we need to feel forward movement into the future, not just this abyss we live in. OK, I admit it. I, Amy, need to feel forward movement. Everybody else is moving there because they have to, but Amy isn’t because she can’t. Phil has some activity related to a new career path (more on that later), Jackson has school and Cub Scouts and basketball/baseball and friends, Conner starts kindergarten in the Fall and has so many friends, and Tae Kwon Do and baseball. Amy is at home and can’t leave without help from Phil or Miss Betty, with nothing going on in her life that is hers alone, or within her control. I know – I’m having a pity party. That’s what happens when I write this late at night. So when you ask how I am, and I say “Just another day in paradise”, you’ll know what I mean.

We took Dylan to a fund-raising dinner for an organization called “Special Kids” in Murfreesboro a couple of weeks ago. Jim and Jill Kelly, the founders of Hunter’s Hope, were the speakers and we got to meet them both. Jill spent a lot of time with us, and held Dylan and loved on him. We are certain that was painful for her, as she just lost her son Hunter to the disease in August. Amy asked Jill if it gets better with time, and Jill said No. Jill gave her testimony at the dinner that night. It was so good to hear how God was their total strength, then and now. Hunter’s Hope is a secular organization, so we didn’t realize they were such committed Christians. We were pleased to have a brother and sister in Christ, who know exactly what we are going through.

We took Dylan back to the Genetics Department at Vanderbilt last week. We had not been there for over 15 months. They had told us that the average life expectancy for Krabbes disease was 13 months, but death was certain by age 2. We wanted to show them – Here is Dylan. He is 26 months old. He smiles and laughs, and does not have a feeding tube. Please don’t keep telling people this same thing. As it turns out, 90% die by age 2. Dylan is in the 10%. The doctor told us “Pessimistically, this could go on for a VERY long time”. Now how are we supposed to take that? Optimistically, he would live for a very short time? It’s really amazing the power that words have to cut your heart. The doctor truly had our best interests at heart – but Amy came away feeling completely depressed and cried on and off for 2 days. The doctor asked “Who cares for your other children?” (We do, of course) and “What will you do when one of you (Phil or Amy) gets sick?” (I guess the same thing we do when Phil is out of town – deal with it). But it had the effect of making us question how the family really is and how long we could continue like this. We also wanted the Genetics department to “fix the system” and help families after they are told this devastating news. We have finally bumbled into a system for Dylan’s healthcare, but it certainly wasn’t easy. The Genetics Department needs to have a social worker to follow up with families and help them, and be a resource to find and coordinate services. There was another little boy in Nashville diagnosed with Krabbes a few weeks after Dylan. He died last month.

Thank you all for praying for us, and continuing to serve in any way possible. We are still getting an amazing level of service from our church, other churches, neighborhood and friends. We keep expecting that to lessen over time, but so many people are continuing to stick with us on this. What a blessing. Please continue to pray for these areas:

+ For Dylan's MIRACLE to restore his health.
+ For wisdom to know how to live our lives WITH Dylan and the uncertainty that is present.
+ That Miss Betty will still be able to care for Dylan to give us relief.
+ That Dylan will not suffer with pain or fear.
+ The Dylan’s eyesight will stabilize and get better. (and if it’s not going to get better, that our hearts will be prepared to accept it).
+ For wisdom for all medical decisions we will be faced with in the future.
+ For Phil's back problem to heal on its own It has been over 18 months and has improved, but seems to have stabilized at a point that still requires too much medication to live with.
+ For protection against depression.
+ For our marriage.
+ For hope for the future as we try to envision anything that will give us hope.
+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often.

The prayer pager number is 1-865-701-2794. It is comforting for us to hear it and know that people are still praying and caring for our family.

Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

Tuesday, February 14, 2006

Dear Friend and Family –

We hope your Valentine’s Day is filled with love and sweetness. Squeeze those children and hold them tight. Amy’s sister sent Dylan the most adorable teddy bear we have ever seen. It is by Gund and the bear’s name is actually Dylan.

It has been a month since our last update. The biggest event was Dylan’s birthday in January. We were able to ‘celebrate’ at the park. About 40 people came, including many of Dylan’s care givers. Dylan wasn’t in a very good mood that day, as evidenced by the (NEW) photos on the website. He did enjoy playing at the park, but not smiling for pictures. Amy took him down the slides and that made him smile. The kids played at the park, we took lots of pictures, and we ate birthday cake. At the end of the party, we stood in a circle and released 4 dozen balloons into the sky. It was symbolic and touching. We were grateful that the bad weather held off. It was chilly, but it could have been pouring down rain, which it did a few hours after the party. But mostly, we were grateful to have our son on his second birthday.

The boys were all sick this month. Thankfully, they were mostly over it before Phil went to London for a short trip. Dylan’s held on the longest, starting with a cough, then a high fever (up to 105 degrees at one point). It turned out to be an ear infection, and he got over it pretty quickly once he got on the antibiotic. He had 3-4 breathing treatments per day for a couple weeks. Thankfully, the spasms he had in his feet are much better. It appears that they will be cyclical.

Our hamster (Gizmo) died. We knew she was really sick right before the boys went to bed. We had them come say goodbye to her. The boys’ reactions were a preview of what is to come. Jackson was stoic, but Conner was devastated. Jackson holds his feelings in, but Conner has such a tender little heart, it just comes out. We prayed for Gizmo. The boys wanted to know if animals went to heaven. We told them that the Bible doesn’t say, but we believe if an animal is loved (i.e., a pet) then it goes to heaven. Conner cried and cried. Amy stayed with him until he cried himself to sleep. It really broke our hearts to see the boys suffer, and it made it all the more real to us how hard it will be for all of us when Dylan dies. The next morning Gizmo was dead. Conner wanted to hold her and touch her, but Jackson wouldn’t. We had a funeral for Gizmo in the rain. We know God doesn’t waste any suffering, so there was certainly a purpose in that.

We have had a couple instances this month of strangers staring at Dylan for a long period of time. Clearly they wonder what is wrong. We realize they don’t mean to be hurtful. But it makes us scream inside – “Don’t you understand? He has a terminal disease! Yes, that’s a bottle he’s drinking from. But we’re lucky it’s not a feeding tube. Find something else for your idle curiosity to feed on. We’re lucky he’s here, and we love him. We want to make the most of each and every day we have left. We don’t want to have to stay home because people like you make us feel sad or uncomfortable.”

To be honest, it’s not just a feeling of being grateful that Dylan is alive. It’s a mixture of gratefulness, tinged with rage that we should have to be grateful for so little. Yes, he is alive. But we want him to talk and walk and run and play. Not just in heaven, but HERE, NOW. The unfairness of it is staggering. Yet the question of “Why?” is not a big struggle for us. I don’t yearn to ask God “Why?”, because you know what? There isn’t an answer that will satisfy me. There just isn’t a reason good enough for this to be happening to our precious little Dylan. There is a book called “Why?” by Anne Graham Lotz. It is excellent. This update has gotten too long, but sometime we will share what we learned from that book. The short version is “There is sometimes a greater purpose to suffering than being relieved from it. For the child of God, suffering is not wasted. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. If God were small enough for us to understand, He would not be big enough to save us.”

Suffice it to say, we still really need your prayers in the following areas:

+ For Dylan's MIRACLE to restore his health.
+ For wisdom to know how to live our lives WITH Dylan and the uncertainty that is present.
+ For direction regarding Phil’s job situation, as we want to be in the center of God’s will.
+ That Dylan will not suffer with pain or fear.
+ The Dylan’s eyesight will stabilize and get better. (and if it’s not going to get better, that our hearts will be prepared to accept it).
+ For wisdom for all medical decisions we will be faced with in the future.
+ For Phil's back problem to heal on its own.
+ For protection against depression.
+ For our marriage.
+ For hope for the future as we try to envision anything that will give us hope.
+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often.

The prayer pager number is 1-865-701-2794. It is comforting for us to hear it and know that people are still praying and caring for our family.

Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

Friday, January 11, 2006

Dear friends and family –

Christmas is over. We stayed busy, which was good. We went to church on Christmas Eve as a family. The candlelight service was so moving. Someone asked Amy, “How is Dylan doing?”. Her immediate first thought was “Well, he is HERE”, which made brought tears to her eyes and made her speechless. Jackson and Conner help us keep whatever sanity we have left. At the Christmas Eve service, during the moving acapella version of “O Holy Night”, we looked down to see Conner using two communion plastic cups as spectacles, pinched between the skin around his eyes. We laughed, which was better than crying. We went to a friend’s house after the service. The boys opened their matching Christmas pajamas and wore them that night, so their Christmas morning pictures are so cute.

On Christmas morning, Miss Betty came over. Dylan threw up during Christmas breakfast. We went to a friend’s house for Christmas dinner. We left on Monday morning to spend 2 days at Phil’s brother Larry’s house in Evansville. On Wednesday morning, the day we were leaving, Conner woke up at 1:00 a.m. vomiting all over his new sleeping bag. Then at 5:00 a.m., Dylan vomited everywhere. We thought – how will we ever make it home, driving 3 hours with 2 children vomiting everywhere? We got ready and left as soon as possible, assuming we had infected the whole house. Thankfully, no one else got sick. Conner and Dylan made it all the way home without throwing up again, so we were thankful for that. Dylan was fine for 48 hours, then threw up again. He was fine for another 48 hours and threw up again. So Christmas vacation was very vomit-filled for us. That was lovely.

We have seen further progression of Dylan’s disease in the last few weeks. Amy had planned a trip to Gatlinburg with a friend – her first time away without the kids in over 2 years. The day before she was to leave, Dylan started having myoclonic jerks or “spasms”. They look like an exaggerated infant startle reflex. He has had them some before, but this day he cried inconsolably and seemed afraid and in pain. The nurse came out and we had to start Dylan on anti-seizure medication to try to make him comfortable. The spasms seemed to be under control, so Amy went on the trip. It was really great to be away, with no responsibility, except the inevitable motherly worry. The spasms improved over the next few days so that we could give the medication on an as-needed basis rather than full-time.

All in all, Dylan has declined over the last several months. He has been better about letting other people hold him for short periods. That is a mixed blessing, because we think it is because he is not as sure who is holding him. On the good side, most children with this disease have a feeding tube shortly after diagnosis or certainly before 2 years of age. Dylan is able to eat on his own and we are so grateful for that. We are thankful that we can take Dylan places, as many parents of Krabbes children find it too difficult. We continue to be so grateful that he still smiles and laughs. We really believe it is unheard of for him to have that ability at almost 2 years of age. Mostly we are grateful to have him with us as he approaches his second birthday this month (Jan 16). It is hard to contemplate the alternative.

Thank you all for thinking of us and saying prayers for us during the holidays. We were blessed to have our family complete. Please do continue to pray for us:

+ For Dylan's MIRACLE to restore his health.
+ That Dylan will not suffer.
+ The Dylan’s eyesight will stabilize and get better. (and if it’s not going to get better, that our hearts will be prepared to accept it).
+ For Dylan’s spasms to be temporary and not to cause him pain or fear.
+ For wisdom for all medical decisions we will be faced with in the future.
+ For Phil's back problem to heal on its own, especially now as symptoms have worsened this week, and he is in California. .
+ For protection against depression.
+ For our marriage.
+ For hope for the future as we try to envision anything that will give us hope.
+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often.

The prayer pager number is 1-865-701-2794. It is comforting for us to hear it and know that people are still praying and caring for our family.

Praying for Dylan, with Faith, Hope and Love,
Amy & Phil

Saturday, December 17, 2005

Dear friends and loved ones –

This has been a very hard update to write. The Christmas season is so meaningful to us as Christians. It is incredibly bittersweet to our family. And we do mean Bitter and Sweet. We are bitter as we shop for gifts for our precious 23 month old son, who can’t play with any toys (so what do we buy him?). Yet it is sweet beyond measure to snuggle up to his chunky warm body, smell his hair, kiss his cheeks and know that we have him for this day, this Christmas. Will there ever be another Christmas with our family complete? The question is in our minds at every holiday and event.

Angels are such an integral part of the Christmas season. Angels are mentioned in the Bible almost 300 times. Most people have likely not given it much thought, but we have, since it is so near to our hearts now. What happens to us when we die? Nowhere in the Bible does it say that when we die, we will become Angels. The Biblical backup for that Truth will follow, because we want people to have the truthful image of Dylan’s future. It is the same future for all of us.

Hebrews 1:14 says “Are not all angels ministering spirits sent to serve those who will inherit salvation?” The note in our Life Application Study Bible elaborates: “Angels are God’s messengers, spiritual beings created by God and under his authority. They have several functions: serving believers, protecting the helpless, proclaiming God’s messages, and executing God’s judgment.”

1 Corinthians 6:4 says, “Do you not know that we will judge angels?” The “we” in the verse refers to the believers.

Jesus Christ is our hope and salvation. He conquered death, so that we could have life eternal, in companionship with our Heavenly Father. Please cling to this truth during the CHRISTmas season. Jesus IS the reason for the season. This update will be rather long, so maybe some other time we will write about what the Bible says will happen to our earthly bodies when we get to heaven. It gives us comfort to think about Dylan someday “dancing with the Angels, walking in new life”, rather than becoming an angel.

We also want to take a moment to thank some of the very special people in Dylan’s life. Without his helpers, therapists, nurse, etc., Dylan’s daily life would be even more uncomfortable. Ms. Betty, Heather, Kiersten, Trisha, Andrea, Mary Alice, Mindee, Rachael, Lauren, Carla, Jennifer M.and others – thank you so much for the love you show Dylan and our family.

It would be impossible to thank all of the people that are caring for our family. You know who you are and we appreciate you so much. From bringing meals, making grocery & Wal-mart trips, doing laundry & yard work, wrapping presents, donating to Dylan’s medical fund, giving us massages, carting Conner to pre-school & Karate, taking Jackson to school, basketball and boy scouts when Phil is traveling, etc. Thank you all for sticking with us for over one year now. Also, there are those faithful and persistent ones out there that continue to dial our prayer pager on a regular basis. We hear it and know you are lifting us up. We also appreciate the encouraging words left on Dylan’s website guestbook (www.caringbridge.org/tn/dylanmay) . We can’t imagine a more perfect example of how God intended us to serve one another than the support we have received.

This email will be a substitute for the Christmas letters we used to do in the past. While our life is centered around Dylan and his care, we are doing the best we can to make life for the other boys as normal as possible. Following is a brief update on the rest of our lives (we’ve also attached a recent photo of the boys to this email):

Conner is now four years old (turning 5 in Feb) and in pre-school two days a week. We can’t believe he will start Kindergarten next year. Amy is working with him now to teach him to read and he read his first little book to Dylan last week. Conner is such a sweet little boy. He has such a gentle personality and is our ‘snuggly’ child. Conner is taking Tae Kwon Do and is now an orange belt. He broke his first board a couple of months ago and seems to really enjoy the class. Conner played baseball this fall and really enjoyed it. Conner is home several days a week and can light up Dylan’s face by just speaking to Dylan. We count on Conner to entertain Dylan and try to keep him from crying while Amy or Phil get something done for a few minutes (such as a shower).

Jackson is now eight years old and in second grade. Jackson is doing incredibly well in school. He has a wonderful teacher that works hard to give him interesting work to do. Jackson really likes computer games, playstation and gameboy games. He seems to have a real interest in learning more about computers. He got his email account set up recently and also put together a phone list of his friends in Excel. He uses Word to type stories and recently shared the price of a Typing Tutor software program with mom & dad so he could learn to ‘really type’. Jackson picked up baseball again this fall. He had a bit of a tough time getting started, but improved a lot and was really hitting well by the end of the season. He is now playing basketball. I think we had one whole week off between the end of baseball and start of basketball.

Jackson and Conner were both on the Franklin Area Swim Team this year. This was Jackson’s second year and Conner’s first. Conner was only 4 and was swimming with the 5&6 year olds. He didn’t place very high, but he got out there and did it and his determination was impressive to watch (he also won the tadpole award for being the youngest on the team). Jackson is really a great swimmer. He was swimming with 7&8 year olds, so he was one of the youngest at the time. Regardless, he brought home a lot of ribbons. We really hope the boys will stick with the swim team. It is great exercise and really fun for us to watch and cheer them on.

There’s not much to say about Amy’s life that hasn’t already been said. Caring for Dylan is her main priority and there is not time for much else. She tries to get out of the house whenever possible because being so housebound is not healthy for anyone. Phil is continuing to work as a consultant for various music industry clients. His time is focused mainly on a company in England and he has travelled to London 3 times and Los Angeles twice in the last 3 months. He is also working with a couple of other clients. The unknown is a bit tough (will the work still be there in 2 months, what time commitments will exist if he pursues more clients), but the flexibility and the time at home has been an answer to prayer. Unfortunately, there is little time outside of work, Dylan and the boys, to pursue anything else. The results of Phil’s MRI were as good as we could expect. The worst answers we could have received were that a) it is degenerative and he will suffer the rest of his life or b) he needs surgery right away. The answer (and best scenario) was that there is either a ruptured disc or scar tissue causing the problems, but it could potentially correct itself since he has already lived with it for a year. So we are hopeful that it will get better without another surgery.

Please do continue to pray for us:

For Dylan's MIRACLE to restore his health.
That Dylan will not suffer.
The Dylan’s eyesight will stabilize and get better. (and if it’s not going to get better, that our hearts will be prepared to accept it).
For wisdom for all medical decisions we will be faced with in the future.
For Phil's back problem to heal on its own.
For protection against depression.
For our marriage, as the stress whittles away at us.
For hope for the future, that our family will somehow be ok.
For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
For physical and emotional strength, and relief in sleep for us and for Dylan.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often.

The prayer pager number is 1-865-701-2794. It is comforting for us to hear it and know that people are still praying and caring for our family.

Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

Saturday, November 5, 2005

Dear Friends and Family –

When we are out and people ask “How is Dylan?”, we usually say “About the same”. Sometimes people go one step further and ask “Has his disease progressed at all?”, which is an extremely painful question to answer (and Amy tries to avoid answering, lest she cry). We have felt for some time that Dylan has been relatively stable. But that has changed. Dylan has resisted bearing weight (standing with our help and support shoes) for a couple months, and we haven’t been forcing him to do it since he got out of the hospital a couple weeks ago. He no longer reaches for toys and doesn’t really play anymore. He vomits a lot, which we always try to tie to some event (virus, not burping, overeating), but the harsh reality seems to be a progression of the disease. He has had more breathing issues, and may have asthma. He gets colds and viruses a lot. Today he had a fever and it went up to 105.3 degrees. We got it back down pretty quickly, but we are not sure what caused it.

But the most devastating regression is his eyesight. Dylan has been having trouble focusing for some months now. He looks around, but doesn’t track things for more than a couple seconds. I weep as I write, as I try to convey how important his eyesight is to us. Dylan’s eyes have always been the window to his soul. We could handle that he couldn’t do anything physically, because he was “with” us mentally and we had such a direct connection to his soul when he looked at us. We hesitate to put it into print because it makes it “more true”, but Dylan seems to be losing his eyesight. We have been to the eye doctor three times since this summer. Dylan’s optic nerve is still healthy, but he has developed nystagmis, which is where the eyes dart back and forth in an attempt to focus. This disease is indescribably cruel and devastating. We are praying that this may be temporary, or that he won’t lose his sight completely, and that he won’t be afraid as it changes. We just can’t fathom anything worse than the fate that awaits our little boy, unless God heals him.

Amy went to the Mother’s Touch Bible Study once last month. Part of the lesson was John 3:16 – “For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life”. We grew up believing that Jesus had made the ultimate sacrifice by dying on the cross. It is now so clear to us that GOD made the ultimate sacrifice. It would be less difficult to die than to watch your son die. God had to watch his son for 33 years, knowing the ultimate outcome was his son’s horribly painful death on a cross. God did this willingly for all of US, people that were not even born yet, many of whom will reject the sacrifice they both made. We have a new understanding and appreciation for the depth of God’s love for us. We cannot fathom being willing to watch our son die, if there was anything in our power to stop it. Yet God did that. Incomprehensible. “Your love, O Lord, reaches to the heavens, your faithfulness to the skies.” Psalm 36:5.

We took Dylan trick or treating on Halloween with the boys. He was the cutest little lion in the whole world. The pictures are on the website.

Thank you for the meals, and laundry and errands. We are astounded that people have continued to help us, as we live in this stressful marathon, over one year later.

Please do continue to pray for us:
+ For Dylan's MIRACLE to restore his health.
+ That Dylan will not suffer.
+ The Dylan’s eyesight will stabilize and get better. (and if it’s not going to get better, that our hearts will be prepared to accept it).
+ For Dylan’s fever, that it will completely go away, with no further effects.
+ For wisdom for all medical decisions we will be faced with in the future.
+ For Phil as he travels this week to California Monday - Thursday, and for Amy as Phil travels this week
+ For Phil's back pain, especially as he travels. Phil is having an MRI on Friday to determine if any action needs to be taken.
+ For protection against depression from being house-bound.
+ For our marriage, as the stress whittles away at us.
+ For hope for the future, that our family will somehow be ok.
+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often.

The prayer pager number is 1-865-701-2794. It is comforting for us to hear it and know that people are still praying and caring for our family.

Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

Monday, October 17, 2005

Dear Friends and Family –

Where to start? Yesterday was Dylan’s 21 month birthday and he spent it in the hospital in Knoxville. We went to Knoxville on Thursday for Jackson’s Fall Break to do something fun with the family. Friday morning, Dylan woke up with a bad cough, stuffy nose and shallow breathing. We spoke to our Hospice nurse and gave him a breathing treatment from Conner’s nebulizer, which helped. Phil stayed at Karen & Doug’s house with Dylan so as not to get him out. When Amy and the boys arrived home from a Fall Festival, Dylan was just up from his nap and was worse again. So we called the nurse again, and she suggested we take him to an ER, since it was 4:30 on Friday afternoon.

We ended up taking him to Karen & Doug’s pediatrician, who also happens to be Doug’s cousin. Dr. Solomon gave Dylan breathing treatment and was very concerned because his blood-oxygen level was very low. He wanted to admit Dylan to the hospital right away. We were shocked, to go from “he has a cold” to “he needs to be in the hospital” within a two hour time-frame. Amy was very emotional about it. None of our children have ever been hospitalized in almost eight years. Here we are – in one of our worst nightmares: away from home, needing medical care, no Hospice staff, getting admitted to a hospital for care by a second doctor (not our friend’s cousin) on call that we have never even met, a doctor who doesn’t know Dylan or us or ANYTHING about Krabbes disease, having to go through the story of Dylan’s terminal disease over and over again. It was truly awful.

They wanted to put in an IV into Dylan, which nurses have always had terrible problems getting into him. We have questions for the doctor on call (who will remain unnamed!!), and don’t hear from him for 3 hours. In the meantime, the nurses try to get an IV into Dylan’s hand and can’t get it after many excruciating minutes of poking around. When they are unsuccessful, the charge nurse suggests getting the blood from his foot for the test to see if he is dehydrated, to know if the IV is necessary. Then the on-call doctor calls and has a unbelievably inappropriate confrontation with Amy at 10 pm, accusing her of being uncooperative, saying he doesn’t know us from “Adam’s Uncle” and he would just as soon send us back to Nashville, and we either trust him or we don’t! As an aside – how in the world could we possible trust this man whom we have never laid eyes on?? It was really awful, emotional, scary and depleting. The test came back that he was dehydrated and they had to try again for an IV, which they were able to get in his foot. He had breathing treatments every 3 hours and steroids for the inflammation in his lungs. He was also on oxygen (nose tube) overnight Friday and part of Saturday. The tests ruled out RSV and bacterial pneumonia. Dylan’s chest x-ray looked “almost asthmatic”, which is entirely possible since Conner has asthma.

We actually had to meet with the hateful doctor on Saturday morning. We discussed various options. He felt like Dylan might need to be in the hospital until Wed or Thurs. He said that Dylan was enough better that we could transfer him to Vanderbilt in an ambulance, rather than a medic air flight, as he had so “kindly” offered us the night before to get rid of us. Dylan continued to improve through Saturday and was just about to his old self again by the evening. The nurses at the Children’s hospital in Knoxville were absolutely wonderful, without exception. On Sunday, we saw a wonderful doctor from the same group, Dr. Brandt. He could not have been more kind to us, which made our experience Friday night even more unbelievable. Dylan was discharged from the hospital and we made a run for home. As soon as we stepped outside, Dylan’s nose got completed stopped up again. So we are home now and still dealing with it and hoping it doesn’t progress again.

This experience was illuminating in many ways. We realized how naïve we were to think we could just make it back home in 3 hours to get whatever medical help we might need. We were shocked at how quickly Dylan’s health could change. We were shocked at how poorly we could be treated by a doctor. We now feel completely “tied” to home (Nashville), to prevent this experience from happening again. We realized how wonderful our Hospice Nurse and the Alive Hospice organization actually are. (We thought we knew, but there is no Hospice for children in Knoxville. We are grateful that there is in Nashville). We learned how quickly parents of sick children become labeled and judged, if they ask too many questions or have an opinion. We feel we owe it to Dylan to know what the options are, to be informed about the ramifications of those options and to make the best decision for him. We realized that people have opinions and judgments about life and death without the experience to justify it. We realized that people’s opinions about life and death are greatly influenced by their belief (or lack of belief) in God and heaven.

We realized the great need for people, especially medical people, to be educated in “palliative care” for terminal children. (Definition: Palliative care is the active, total care of a patient whose disease is not responsive to curative treatment. Control of pain or other symptoms of psychosocial, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families.) Many doctors (but certainly not all – as evidenced by some of our experience with a doctor friend of ours and with one of the specialists we saw in Minnesota last year), especially pediatricians, are trained to “fix it”. In Dylan’s case, it can’t be fixed by a doctor. So we have to find the best way for him to live his life and there is no one to help us or others in a similar situation do that (with the exception of our hospice nurse and social worker). It sounds to us like parents with terminal children either do everything possible, including aggressive invasive medical intervention, to prolong life at any cost, or they do nothing. It seems that there is no support for being in the middle, where we are.

Sorry for all the griping. We actually have some GREAT NEWS!!!!! Phil’s business has finally sold!! We are so grateful for that and we appreciate all of your related prayers. It is really a weight off of him. We lost some money on the sale, but we were prepared, willing and expected to lose money and just wanted to take a burden off the plate!! It’s an old cliché, but “the check is in the mail”. The buyers are very nice and have a lot of local contacts and we think they can make a great success of it.
While we’re on the good news - - the ants are gone!!

Please do continue to pray for us:
+ For Dylan's MIRACLE to restore his health.
+ That Dylan will not suffer.
+ For Dylan’s cold, that it will completely go away, with no further effects.
+ For wisdom for all medical decisions we will be faced with in the future.
+ For Amy & Conner & Jackson, as they have their picks from the list of sore throat, headache, running nose and cough
+ For Phil as he travels this week Tues-Friday, and for Amy as Phil travels this week
+ For Phil's back pain, especially as he travels (the pain has been manageable lately, but only through medication, which isn’t a great long-term solution)
+ For protection against depression from being house-bound
+ For hope for the future, that our family will somehow be ok.
+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often.

The prayer pager number is 1-865-701-2794. It is comforting for us to hear it and know that people are still praying and caring for our family.

Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

Friday, September 30, 2005

Dear friends and family –

We apologize for the length of our silence. This has been the longest time ever since our last update.

The funeral for Phil’s mom went as well as it could. Several people had the impression that this was a total shock, which wasn’t exactly the case. The timing was unexpected, but Millie had a stroke 10 years ago, and had been paralyzed on one side ever since. She continued to have strokes and her health had really declined in the last couple of years. Phil’s dad has been an absolute saint to provide 100% of her care for over 10 years. During this hospital stay, the family became concerned that Don wouldn’t be able to care for her at home. Phil and his brothers are extremely grateful that she was able to live her entire life at home, with the care of her loving husband of over 50 years, and never had to see a nursing home. We know she is back to her old “spitfire” self in heaven.

We are pleased to have hired a new “helper” to replace Clara. Her name is Heather and it was completely God, working out the details. Heather comes Mon, Tues, Wed & Friday from about 3:00-7:00. She is truly a Godsend and we are grateful to have her. She can’t hold Dylan, but she can sure crank through a list of things to do! We share her with 2 other neighbors, who have new babies.

Phil started his new consulting job and is enjoying it. He went to London for 7 days on September 4th. Amy had her first taste of being home alone with Dylan and the boys for an extended period of time. Amy had a big pity party for herself on Labor Day, because she felt lonely and forgotten. Everybody was with their families doing something fun (or so she assumed) and Phil was out of town, while she struggled alone. Later in the week, Phil’s dad (Don) came down and was a big help and things got better. He was able to shuttle the boys back and forth to baseball practices and do some “manly” chores around the house.

Phil came home for a week, then left for London AGAIN for a week. The second week was also very hard. There is always “something”. On Thursday, Jackson was trying to help and warmed Conner’s milk in the microwave. It was so hot that Conner spilled it on his chest and got a second degree burn on his chest, with a drip down toward his stomach. At the time, we thought he had swallowed some and burned his insides. Amy made an emergency trip to the doctor, waiting for them to show up at 8:00, hoping to avoid the emergency room. Little did Amy know that the doctors don’t actually come in until 9:00! Poor Conner cried and cried and cried. Amy’s friend Angie met her at the doctor’s office. Amy held Dylan and Conner both, while Angie poured water onto the burn every minute or so. Conner was a little trooper. He was even up for playing in his baseball game that evening. The burn is going to be fine, but it sure was a struggle at the time.

We hate to gripe about it, but the ants have been back on and off for the whole month. Whenever Amy saw a new batch, the next person who spoke to her got their “head bitten off”. She really felt driven to the edge of a nervous breakdown by these ridiculous ants. This week, she called the exterminator, and requested to see the supervisor TODAY. There has got to be something going on, unless this is one of the 10 Plagues in Egypt and we’re not obeying the “Let My People GO!” Anyway, the supervisor said they would check under the house, but he’s only seen them in a crawl space 3 times in 15 years. Well, wouldn’t you know, this was the 4th!! We are just glad to have found the problem so it can get fixed before we have to be committed to a mental institution.

We don’t want to get excited, but there is a prospect on Phil’s business. We are so hopeful that this will go through so we can get out from under that burden. Phil had decided it would be impossible for him to put out this mailing, with starting a new job and traveling. We would at least have something to celebrate if it sells!

Last but not least, Jackson and Dylan have been sick this week. They had a stomach virus and fever, which ended in congestion and coughing. Whenever Dylan gets sick, he takes 2 steps back. He has been resisting weight bearing exercises on his arms and legs for weeks and now, we haven’t been able to even try it for 4 days, which makes it so hard to make up the lost ground. Dylan is probably fussier than he used to be. Irritability is one of the first signs of the disease, but it is hard to know how to help because he is also cutting SEVEN teeth! Dylan does not focus on faces or objects anymore. He glances at us, but won’t hold our eye contact and doesn’t track well. Dylan has always had the most beautiful blue eyes in the world. It is unimaginably heartbreaking to lose that connection with him. The eye doctor assures us that Dylan can see, but the response from the brain to the eyes is much slower. He tries so hard, but he can’t help it. He still responds perfectly to sound, and smiles and laughs, so we are grateful for that.

Please continue to pray for us. Here are our specific requests:
+ For Dylan's MIRACLE to restore his health.
+ That Dylan will not suffer.
+ For this deal regarding Phil’s business to be completed and the business sold.
+ For Phil's back pain, especially as he travels.
+ For Amy to be strong while Phil is traveling.
+ For protection against depression and irritability with each other as the stress continues.
+ For hope for the future, that our family will somehow be ok.
+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often.

The prayer pager number is 1-865-701-2794. It is comforting for us to hear it and know that people are still praying and caring for our family.

Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

Sunday, August 21, 2005

Dear Friends and Family –

We could certainly use some extra prayers right now. This has been one of the most tumultuous fortnights of our ordeal. Here are the events, as they happened –

Tues 8/9: We received word that Phil’s mom was in the hospital, intensive care, with severe pneumonia, staph infection and dehydration.
Wed 8/10: Phil drives to KY to be with his mom and dad and spends the night. Phil’s business has not sold, so some wonderful folks from our Sunday School class offered to help sell the advertising. Phil was supposed to meet with them, but was gone, so Amy limped her way through it.
Thurs 8/11: Phil, while in KY, gets a fax contract offer for an excellent part-time, short-term consulting agreement in the music industry that Phil hopes can turn into something full-time down the road. We are excited about the new prospect, but a little apprehensive about the family situation because travel (overseas) will be involved.
Fri 8/12: Phil resigns his position as controller of the Brentwood company, where he has worked for the last 10 months. Phil knew early on that this would not be a good long-term fit for him, but it met our needs at the time. His boss tried to get him to stay and give it another chance, and offered a raise and bonus to “give it 60 days”.
Sat 8/13: After much discussion, we decide that Phil cannot continue at the Brentwood company in any capacity that will satisfy his boss AND the family, so bye-bye bonus. Oh well. We begin looking forward to the new position and how the details of the travel will work (particularly for those of us left behind!).
Mon 8/15: Jackson’s first day back to school.
Tues 8/16: Clara resigns her position as our “helper” to take her “dream job”. She was a huge blessing to us and we can’t imagine being able to replace her. We are stunned and panicked. Amy is absolutely beside herself at the prospect of Phil leaving the country with no help at home.
Wed 8/17: Phil drives back to KY to see his mom. She is responsive enough to tell Phil she loves him and she seems better.
Thurs 8/18: Phil’s mom had improved enough to be moved from intensive care to a private room.
Fri 8/18: Phil’s Mom (Millie May) died about noon. We are shocked, because we thought she was doing much better.

Do they make roller coasters that go down, but don’t come back up? That’s what these weeks felt like.

Phil left very early this (Sat.) morning to go to KY to help plan his mother’s funeral. He is driving home Sunday night to pick up Amy & the kids. We will all be attending the funeral in Salem KY on Monday. This will be the first experience with death for the boys.

Please pray for us:

For comfort and peace for the whole family (especially Phil and his dad, Don May)

For Jackson and Conner as they confront death for the first time, that they will feel loved and safe.
For Phil & Amy (and anyone else the boys might ask) to have the right answers for Jackson and Conner about death and heaven and WHY (when we don’t know!!)
For the right person to replace Clara as our helper
For Dylan's MIRACLE to restore his health.
That Dylan will not suffer.
For Phil's back pain (the driving back & forth to KY has irritated his back again).
For protection against depression.
For hope for the future, that our family will somehow be ok.
For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
For physical and emotional strength, and relief in sleep for us and for Dylan.
Also please pray that Phil’s business will sell. His website is www.citypublicationsofnashville.net. He is having to try to put out another mailing in the midst of all this, hoping to break even.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often. The prayer pager number is 1-865-701-2794.

Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

P.S. THE ANTS ARE BACK!!!!! AAAARRRRGGGGHHHHHHH!!!!!!!!!

Saturday, July 16, 2005

Dear friends and family –

Today is Dylan’s 18 month birthday, 1 ½ years old. It is mind-boggling to think of where we are now, in relation to where we were 18 months ago – overjoyed with the birth of our precious son. We just realized that Dylan should have been sitting up A YEAR AGO!! But the poor little guy just can’t. Everything is relative. When compared to a healthy child, there are innumerable things that Dylan can’t do. But when compared to other Krabbe children, he is doing really well. We try to hang on to the good parts. We are so grateful to have him here with us. For the most part, he is a sweet, happy boy. He doesn’t seem to know that he shouldn’t have to struggle like this. He really thinks his brothers hung the moon and he doesn’t know that he should be running around with them.

Since the bracelets that were sold at Dylan’s benefit concert were such a hit (but sold out quickly), my sister Laura has ordered and finally received the new “Dylan bracelets”. She is selling them for $2 each or 3 for $5. They are a deep blue (with no snap). We tried to match the color to Dylan’s eyes, but the colors were not true on our computer screen, so the bracelets are darker. Anyway, the bracelets contain our mantra: “PRAYING FOR DYLAN, WITH FAITH, HOPE AND LOVE”. If you want to order them, you can contact her (Laura Downing) by email so she can give you the particulars: Bdowning@alltell.net. (We have a few at our house, if you are in the area and want some).

Several people have asked what life is like for Dylan. So here is a typical day – Dylan sleeps with Amy. Sleep is cyclical, and it has been much better lately. Several times in the past he would awake up to 15 or 20 times in a night. Lately, he has been waking around 3 times during the early part of the night, and more frequently toward morning. He usually gets up between 7 and 8 a.m. He wakes up happier if Amy is still with him when he wakes up. Dylan really likes his morning bottle. After the bottle, we try to do his exercises – range of motion and weight bearing. Dylan has new “boots”, as we call them. They are really orthopedic supports for his feet and ankles so he can better tolerate bearing weight on his legs. They do seem to help, but he’s not wild about them. Putting them on usually makes him cry. We try to entertain him ½-1 hour with the boots on, with Dylan standing a few minutes at a time. Dylan tolerates everything better when the boys are willing to entertain. Next comes breakfast, which usually takes a long time. Dylan will open his mouth for his brothers to stick the spoon in when he will have no part of his mom and dad. By this time, it’s close to 11:00. 3 mornings per week, Dylan has either OT or a chiropractor visit. Thankfully, they come to us. We are constantly incorporating “therapy” we’ve learned into the rest of the day, from oral stimulation with a toothbrush to visual tracking with toys to weight bearing through the arms to stretching his muscles.
Then it’s naptime. A good nap is over 2 hours. Anything less and Dylan is going to be grumpy for the rest of the afternoon and will need another catnap. Naps are high-maintenance, as he wakes up a lot. If he wakes up once or twice, that’s a good nap. Sometimes it’s 4-5 times, with us racing up the steps to attempt to get him back to sleep before he gets wide awake. Naptime is golden to us. That’s when Amy can feed the big boys, or play with them, or try to take them swimming (in between running back and forth to the house to get Dylan back to sleep). When Dylan gets up, he needs time to get awake before he will consider eating. Lunch is usually pretty late in the day. Three-four times per week, we have appointments for Dylan in the late afternoon (OT, PT, social workers, nurse). Then it’s time to get everybody fed dinner. We seriously thank God every day for the meals that come (and “the hands that prepared it”) because there doesn’t seem to be a place in the day for fixing a meal. Either Phil or Amy holds Dylan while we eat and try to poke more food down him too, which is not fun for Dylan, but obviously necessary. Shortly after dinner is bath time (unless we’ve opted for a “chlorine bath”!) and we put all 3 boys in the tub together. The big boys watch a video, while one of us tries to keep Dylan satisfied, then it’s time for the bedtime routine for Jackson & Conner. Phil usually puts them to bed while Amy has Dylan. Then our most coveted time of the day – one hour of TV for Amy & Phil. What should take about 50 minutes (because we fast-forward through the commercials and hit pause when necessary) usually takes 1 ½ hours because of stopping to do stuff for Dylan or because we can’t hear when he’s crying. Dylan gets his night-time bottle about 9:30. He usually wants his Daddy to give him his bottle and hold him until he falls asleep. Then it’s to bed about 10:00 and the whole thing starts over again. If it sounds like Jackson and Conner aren’t getting enough attention, it’s because they’re not. It is excruciating to be so divided between the three children, knowing that none of them are really getting enough of what they need.

Clara has been a HUGE help. She is not able to hold Dylan much, although we are really working on it. But she is wonderful with the children and the extra set of hands has helped reduce Amy’s stress level. Clara comes in the afternoons 4 days per week. Miss Betty comes on Wednesdays because Amy still works one day per week. Thank God Miss Betty is still able to care for Dylan. For awhile, Amy wasn’t leaving the house for nearly a week at a time. That changed when Jackson & Conner joined the Franklin swim team! That went on for 2 months and is now over, thank goodness.

Dylan cries a lot, but is usually consolable. He does not want to be put down, except for when his brothers push him in his umbrella stroller. That usually works, unless the boys stop pushing, which is often. Jackson and Conner are highly motivated by money. We pay them 2cents per minute to push Dylan in the stroller. Fifty cents will get Amy showered and dressed, and it’s actually worth much more. (We think of it as working on Jackson’s math skills because he’s very good at calculating how much money he’s GOING to earn. . . .). Many Krabbe children are inconsolable for hours at a time. That is rarely the case for Dylan, but it is high-maintenance to keep it from happening. It is hard to determine if Dylan has pain. We know he is spoiled rotten because we hold him all the time, but there is nothing to be done about that. Dylan still smiles and laughs, but we have to be more creative. He’s tired of a lot of our tricks to make him laugh. We all need to laugh more, but it’s hard to find things to laugh about in our current state. So that is “A Day in the Life of Dylan”.

We are so grateful for the many ways that people are helping us. The meals are an absolute gift from God. Those of you who have brought meals – please know that your hands were literal extensions of God’s love to us. Several ladies from Sunday School have been working on our laundry too and we are SO grateful for that. A few times we have set it on the porch for someone to pick up. Now our dirty laundry has been aired LITERALLY, not just figuratively via the internet. Thank you also for the prayers. It is almost midnight now. Would you believe that the prayer pager has gone off 13 times while I have been writing this update? Now 14. Isn’t that amazing?? Thank you for praying and paging!!

Please do continue to pray for us:
For Dylan's MIRACLE to restore his health.
That Dylan will not suffer.
That Dylan will accept and love Clara so she can hold him and give us some relief.
For Phil's back pain.
For protection against depression.
For hope for the future, that our family will somehow be ok.
For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
For physical and emotional strength, and relief in sleep for us and for Dylan.
For financial stability.
Also please pray that Phil’s business will sell. If it doesn’t sell in June, he will have to start working on another mailing His website is www.citypublicationsofnashville.net. We think the business would be a perfect thing for a mother (who likes sales) with kids in school who wants to be home after school.

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often. The prayer pager number is 1-865-701-2794.

Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

P.S. – The prayer pager is up to 19 times during this writing. You folks need to get to bed. . .

Sunday, June 19, 2005

Today is Father’s Day. Phil is much better than Amy about not letting the sentimentality of a particular day mire him down. We had a good day – friends came over to play in the pool. It is possible to function in what appears to be a normal fashion, but in the back of our minds, terrible thoughts race through our heads. Will this be our last Father’s Day (substitute any holiday here), with our family complete? Will this be the last little foot print we’ll ever receive in a holiday card from Dylan? The presence of these thoughts makes us feel alienated from other people. We so wish to be “normal”, worried about the children’s activities or school or work. There is a Botox commercial with the lines “Today I got into my favorite pair of jeans. Today I had a great hair day. Today I called my physician about Botox”. It is mind boggling to think that is all some people are thinking about. Our household discusses life and death issues on a daily basis. We so want our children to be concerned with childish things, and not things that many adults have never been forced to address. We will never be the same. In God’s eyes, that may not be a bad thing. But what we wouldn’t give to go back to our lives a year ago!! Please be careful of your thoughts and feelings. It can ALWAYS be worse (even now). Last summer, Amy was rather depressed. Now that time seems like sheer bliss. Everything is relative.

We are feeling “lost” from a medical standpoint. There is no physician spearheading Dylan’s treatment. We have seen a Geneticist, Neurologist, Opthomologist, Physical Therapist, Occupational Therapist, Feeding Specialist, Swallow Study Specialist, Hospice Nurse, 2 Hospice Doctors, Pediatrician, Grief Counselor, and 3 Social Workers. Out of all that, we still do not have a “Captain of the Ship”. We thought it would be our Pediatrician, but that turned out to be completely impractical. The nurse calls him to get prescriptions, but Dylan has not seen him in over six months. We then thought it would be the Hospice Doctor, but we have only seen him twice, and that has been about 5 months. There is no one to provide us with a plan of action to help Dylan get the most out of his life and suffer the least. We feel we are just flailing in the wind. This disease is so rare that there is no plan of action.

We saw a specialist in Minnesota in November, but he has since left that hospital. We were given a rough outline of what to expect from this disease. So far, the timeline has been off by a lot, thank God. We were told that Dylan would not be smiling or know us past 12-13 months, yet he still does. We were told that he would not gain weight and that just maintaining his weight would be a milestone. Dylan weighed right at 18 pounds from 8 months of age until almost 17 months. We are so pleased that he recently gained up to 19.5 pounds! (We put an ounce of heavy cream in his bottles and that made the difference).

We recently wrote a letter appealing to Hunter’s Hope to provide a specialist to the children suffering from Krabbes. We (the families with Krabbes children) need a physician who could be available to see our children periodically and consult with us when needed. Each family is stumbling around, trying to recreate the wheel. We have so many questions and we need help from an expert in this disease, someone who has seen other children and can tell us, this worked and this didn’t. It is senseless for us all to be suffering from trial and error, when someone could simply compile information and share it. Honestly, we as parents are not medically qualified to find all the answers, as we are not even sure of all the questions! We certainly do not have enough information to make our decisions. We need data about THIS disease, not what care would be provided to an otherwise healthy child. It’s like being told how to slice an apple, when you have a tomato. An apple corer just won’t do for a tomato. Hunter’s Hope has responded that this will be really expensive now and is not something they are able to help with. We are not giving up on the idea – we just have to find another avenue to make this work.

Dylan is such an amazingly precious little boy. He turned 17 months old last week. His personality was and is so sweet and happy. He has this terrible disease and yet he has not given up on smiling and laughing. It must be so frustrating for his body to not cooperate with what he wants to do. He is more irritable lately, but he is also cutting his molars and an eye tooth. Poor little Dylan, also has to deal with the little things like cutting teeth. We cry out for him also, Isn’t this enough? Does he really have to hurt from cutting teeth too? We are becoming concerned about his eyesight. We were told by the opthamologist that “by the time he goes blind, his other neurological problems will be so severe that it won’t matter”. It kills me just to type those words. Can you imagine saying that to a parent about their baby? We are going to take him to a pediatric opthamologist (a different one, obviously) to see if there is anything that can be done to help.

Phil’s back is better. He thinks the acupuncture is helping. He currently has 8 small needles in his back that they leave in for about 2 weeks. He still cannot sit for any length of time and is taking a non-narcotic pain medication to be able to function with the pain. He could certainly use your prayers.

Thank you so much to Jennifer, for all the many things you’ve done, but especially for being the “taxi” for the children so much lately. We have been so blessed by the women from our Sunday School class who have been rotating doing our laundry. We think when all this is over, we should write a book for churches on “The Model of Compassionate Service”. We have certainly been blessed by it and hope others can be too.

Please continue to pray for us: The needs don’t seem to change much, but they are still just as real.

For Dylan's MIRACLE to restore his health.

That Dylan will not suffer.

That Dylan will accept and love Clara so she can hold him and give us some relief.

For Phil's back pain.

For protection against depression.

For hope for the future, that our family will somehow be ok.

For Jackson and Conner, that we can give them the love, words, comfort and time that they need.

For physical and emotional strength, and relief in sleep for us and for Dylan.
For financial stability.

Also please pray that Phil’s business will sell. If it doesn’t sell in June, he will have to start working on another mailing His website is www.citypublicationsofnashville.net. We think the business would be a perfect thing for a mother (who likes sales) with kids in school who wants to be home after school.



You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often. The prayer pager number is 1-865-701-2794. Thank you so much for your prayers.



Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

Monday, May 30, 2005

Dear Friends and Family –

This update is long overdue. We haven’t written, because it’s all the same old drivel. At the risk of sounding like a broken record, here’s our update:

It’s 4:25 a.m. on Memorial Day. I am writing now because I couldn’t sleep after realizing how we will be spending our future Memorial Days (absent the miracle we are so desperately praying for). Today MUST be a celebration day for us of having Dylan WITH us.

It is so hard to find joy, contentment, or even equilibrium in a today where the tomorrow is so bleak. Our lives are spent just trying to make it through the day. We tread water, hoping to keep ourselves afloat.

Dylan has had 2 ear infections, back to back. First the left ear, then both ears. He’s also cutting a molar and an eye tooth. The poor little guy just can’t get a break. He came through the illnesses like a champ – he has maintained his weight, and his smile, and we are so grateful for that. We do feel that his awareness and his laughter and smile have been a miracle. He’s 16 ½ months old now. When we are out, all can be well until someone asks how old he is. Then they know something is wrong. We now find ourselves avoiding situations where people who don’t know might talk to us, lest an explanation become necessary. It’s impossible to give the explanation without a meltdown. So we just kind of choke on it and find a way to move away. Just know that you never know what someone is going through on the inside. If someone acts odd, or rude, there may be a very good reason . . . .

Mother’s Day was better than expected. We ate at Cracker Barrel and went to the zoo. It was a place where people did not know and no one said “Happy Mother’s Day”, which probably would have made Amy cry. Phil issued a very sweet “Proclamation” that Mother’s Day in the May household would be renamed “Amy’s Special Day” from this day forward.

Phil’s back is “better” (if you can call it that), in that he can now tolerate laying and standing (but not sitting). He sees a chiropractor who does adjustments and acupuncture. He sometimes has tiny needles in his back for a week at a time. He lies on an inversion table (upside down) twice a day. It really doesn’t seem like too much to ask that he not have to deal with this, in addition to everything else.

We continue to be blessed by the Body of Christ in a myriad of ways. One friend asked how we had time to make our yard look so nice. It was not us!! The yard and flower beds were worked on by our Sunday School class and a 6th grade class from church. It really does ease our stress to not look around at all the things that are not getting done outside. We could have been living in a jungle by now. Instead, everything looks beautiful. Thank you guys for that!!

Clara has been a huge help. She has been able to take Dylan for short walks in the stroller, but not to hold him for any length of time. But having an extra set of hands for a few hours during the day has been a huge help. We have just worked out a nifty schedule, so she can work for 4 of us (several friends of ours) in order to have a full-time job.

The prayer pager has been a renewed blessing these days. Amy tries to thank God each time it goes off, as a way to be in a spirit of thanksgiving. Please do continue to pray for us:

+ For Dylan's MIRACLE to restore his health.

+ That Dylan will not suffer.

+ That Dylan will accept and love Clara so she can hold him and give us some relief.

+ For Phil's back pain.

+ For protection against depression.

+ For hope for the future, that our family will somehow be ok.

+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.

+ For physical and emotional strength, and relief in sleep for us and for Dylan.
+ For financial stability.

+ Also please pray that Phil’s business will sell. If it doesn’t sell in June, he will have to start working on another mailing. Is that possible? It seems like he just did that! His website is www.citypublicationsofnashville.net. We think the business would be a perfect thing for a mother (who likes sales) with kids in school who wants to be home after school.


You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often. The prayer pager number is 1-865-701-2794. Thank you so much for your prayers.

Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

Tuesday, May 3, 2005

Hello dear friends and family –

Time for another update. We hesitate to put this in print, because mentally, it makes it “more true”. We feel that Dylan’s plateau has slipped a little bit. He is still smiling and laughing, thank God. But he is not reaching with his arms as much and the myoclonic jerks are back (similar to the infant startle reflex). They don’t cause him trouble during the day, but they wake him at night. His head control is not as good as it was. These things are not immediately recognizable, but when we think about this month versus a couple months ago, we can see it. The thought of a slow, painful progression of this horrific disease is agonizing beyond measure. On the good side, he is doing better with bearing weight on his legs, now that we have figured out to “sandwich” him between the chair and ottoman for his therapy.

We have come to realize that we need regular help in this marathon. One of us holds Dylan all the time, except for short stints in the stroller. It is extremely difficult to keep a family of 5 functioning with one hand. Amy needs someone to be her hands part of the day, while she has Dylan. In a perfect world, Dylan will come to accept and love this person so someone else can hold him. The ultimate goal is to get help with Dylan so we can still play with and give Jackson and Conner our full attention at least for a little while each day. They have been very good about not “blaming” Dylan for being in the way, or crying a lot. But we know that they need more than we are able to give and we don’t want them to be short-changed in their childhood, anymore than they already are. We know from therapies that once or twice a week is not going to make Dylan comfortable enough to accept someone. So we wanted someone to be here regularly – especially this summer when all 3 boys will be at home all day.

After discussing it with Trisha, our friend and social worker, we mapped out a plan to find just the right person. Our specifications were – we need a cross between Martha in the Bible and Mary Poppins. It sounded like a pipe dream, but we figured we might as well start with our hopes high. We were just about to implement the search plan, when God provided our Martha/Mary Poppins. Her name is Clara and she was referred by a friend (to whom we are extremely grateful!). We asked her to read the website to see if this was something she wanted to be involved in, as it is not a typical happy “Nanny” situation. Clara prayed the whole afternoon and started interceding for our family right away. So we are grateful to have found our “helper” with no time or stress on our part. God truly provided for that need. We didn’t even have a chance to send out an email about it!! Further Godly intervention came when we were discussing how to pay for the help. We were struggling with whether Phil should change his schedule and spend more time away from the family (working) in order to meet this financial need. Within a couple of days of that discussion, a family member offered to meet that need for us. What a blessing!

Amy has started her countdown to the dreaded Mother’s Day. Last Mother’s Day was so joyous. We had Dylan dedicated to God at church on that day. Never in our worst nightmare could we have imagined being where we are today. Mother’s Day will never ever be the same. Amy is thankful to have had 7 Happy Mother’s Days. Amy’s new friend Laura, in California, has a daughter with Krabbes diseae also. This is Laura’s first Mother’s Day and her daughter Olivia’s first birthday is at the end of May. Please lift up Laura in your prayers also, as we approach what should have been such a blessed day.

Our Sunday School class has “adopted” our family as their service project during our church’s 40 Days of Community study. They have been so wonderful, in trying to envision and meet every need they possibly can. They have been very creative and truly have servants’ hearts. Thanks everyone!!!

Please continue to pray for us. Our needs are:

+ For Dylan's MIRACLE to restore his health.

+ That Dylan will not suffer.

+ That Dylan will accept and love Clara so she can hold him and give us some relief.

+ For Phil's back pain, which has been a little better this week, but needs considerable improvement to become bearable.

+ For protection against depression (especially on Mother’s Day, and for our friend Laura too).

+ For hope for the future, that our family will somehow be ok.

+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.

+ For physical and emotional strength, and relief in sleep for us and for Dylan.
+ For financial stability.

+ Also please pray that Phil’s business will sell quickly (or less slowly, since quickly is long gone) www.citypublicationsofnashville.net).



You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often. The prayer pager number is 1-865-701-2794. Thank you so much for your prayers.



Praying for Dylan, with Faith, Hope and Love,

Amy & Phil

Thursday, April 14, 2005

Dear Friends and Family (and also those of you who are praying whom we have not even met!) –

The EWA Concert and Springfest Day benefiting Dylan’s trust medical fund last weekend were both a huge success. The concert Friday night had absolutely incredible entertainment. We were amazed and humbled by the outpouring of support from the community. The artists were incredible, including: Billy Ray Cyrus, Rebecca St. James, Shaun Groves, Debra Soule, Ken Harrell, AJ Masters, Chas Sanders & Becca, and Billy Joe Royal with his whole band. We were presented with an autographed Hall of Fame jersey from Jim Kelly, whose son Hunter also has Krabbes disease. Gibson Guitar donated a really cool guitar, which was signed by all the artists and auctioned in a silent auction. The buyer, in an amazing gesture of anonymous generosity, gave the guitar to our family. We truly wish we knew this person’s identity so we could properly thank him/her.

We have no idea how many dozens and dozens of volunteers it must have taken to put on such an incredible event. We hope to get a list so that we can thank them properly, but until then, THANK YOU ALL, FROM THE BOTTOM OF OUR HEARTS. Also, thank you to each person who came to show that you care about our family. It really means the world to us. The multiple missions of the events were accomplished. The events raised money for Dylan’s medical expenses, but also, raised awareness of this dreadful disease, while showing love and support to our family. Last but not least, Dylan is being covered in prayer by even more people now. We thank you all for that. Without God’s presence in this situation, we would be without strength and without hope.

People have told us that we seem a little “better”. It’s really not that. We are completely and utterly heartbroken, living our worst nightmare. Yet, we know that unless God gives us the miracle we are so desperately praying for, things will only get worse from here. We continue to function, because we don’t have a choice. We try to make life as normal as possible for Jackson and Conner. We know that sometime in the future, we will look back at April 2005 and wish we could be there. It seems impossible for us to wish we could be where we are now. Yet right now, we can hold our precious Dylan and cover him with kisses.

The doctors had warned us that Dylan was unlikely to know us past 12 or 13 months of age. Yet he is almost 15 months old and notices everything that goes on around him, and smiles and laughs. Dylan’s smile is pure sunshine, beautiful, amazing, joyous, magical. . . . . So we are grateful for that. Irritability is a major symptom of the disease. Most parents of children with Krabbes disease find it necessary to medicate them for the irritability and stiffness. We are grateful that we can comfort Dylan by holding him and not yet have to give him drugs to calm him. We have to hold him nearly all the time, and he allows no one else to do it (other than on rare occasions) except Miss Betty, yet we are grateful that we have the power to comfort him.

Last week was the SIX MONTH anniversary of Dylan’s diagnosis. It is shocking to realize that we have been living like this for so long (over 7 months including the search for what was wrong). We have received so much help in so many ways from so many people. Yet we are coming to realize that in our best case scenario, we are in for a marathon, not a sprint. But it feels like our energy was spent on the sprint, with no finish line in sight. We are trying to figure out a way to function through the upcoming months.

So when people say “How are you?”, our choices are to not answer (which Amy usually does), or to avoid the truth (which Phil usually does), or cry (which neither of us want to do). The truth is, we are not ok, and may never be ok, but it’s very hard to answer truthfully without crying. Please don’t feel bad for saying “How are you?”, because EVERYBODY does it. It really just means “I’m saying something polite after we’ve said hello”. It’s amazing how everything in our lives has changed, even the ability to answer a simple question.

Today is Amy’s birthday. It has been indescribably sad. Tears have flowed like today’s spring storms, which match her mood. Given that, it probably wasn’t a good day to write this update, but it was long overdue. Our only consolation is that Joy comes in the morning, but God, when will it be morning?

Please continue to pray for us. Our needs are:

+ For Dylan's MIRACLE to restore his health.

+ For wisdom, as we try to make decisions about how to keep the family functioning, especially as we approach the end of the school year.

+ That Dylan will not suffer.

+ For Phil's back pain, which has been MUCH worse over the two weeks. He has had constant problems for over 6 months now, and the pain is wearing him down.

+ For our stress level to be reduced and protection from the little problems.

+ For protection against depression.

+ For hope for the future, that our family will somehow be ok.

+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.

+ For physical and emotional strength, and relief in sleep for us and for Dylan.
+ For financial stability.

+ Also please pray that Phil’s business will sell quickly (or less slowly, since quickly is long gone) www.citypublicationsofnashville.net).



You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We appreciate the signings in the guestbook. Feel free to do it often. The prayer pager number is 1-865-701-2794. Thank you so much for your prayers.



Still praying for our precious baby,

Amy & Phil

Saturday, March 19, 2005

Hello Friends and Family –

We wanted to tell you some exciting news. Some folks in our community (spearheaded by East Williamson Athletics) have decided to organize a benefit for Dylan (for his Trust Fund for medical expenses). It will have 2 parts:

Benefit Concert: Friday, April 8th, 7:00 pm at the People’s Church (First Baptist) in Franklin. So far, the artists committed are:

Rebecca St. James
Billy Ray Cyrus
Billy Joe Royal (Down in the Boondocks, I Miss You Already, Tell It Like It Is, I’ll Pin A Note On Your Pillow, Burned Like a Rocket)
Debra Soule (wrote Song for Dylan, did the first benefit concert for Dylan in December)
Songwriter AJ Masters (wrote Faith Hill’s Love Ain’t Like That, Randy Travis’s Old Pair of Shoes, etc)

All the kids playing sports in the East Williamson Athletic Association will get into the concert for free. Advanced tickets can be purchased for $10 on-line at www.EWASports.com or at the door that evening.

EWA (East Williamson Athletics) Springfest: Saturday April 9th, 10:00 a.m. Fun Family Day at the ball fields behind Trinity Elementary School, with inflatable play areas, dunking booths, some famous professional athletes, music by a DJ, food, and of course, baseball!!! This is a huge event that the EWA puts on each year to celebrate opening of baseball season and to teach the kids about giving back to the community. This year, Dylan’s trust fund will be the beneficiary of the event proceeds.

Bracelets: They have ordered tye dye bracelets with “Dylan” and “Hunter’s Hope” to sell (Hunter’s Hope is the foundation started by football star Jim Kelly, because his son Hunter, also has Krabbe Disease).

We want to extend a HUGE thanks to Matt Clarke and Angela Brown, who thought of us, and followed this to fruition. We are touched beyond belief by the artists and volunteers willing to give of their time to help us.

Please get the word out to everyone in the area. You can forward this email to your distribution list, if you would like. We hope the event is a huge success so that the efforts of the faithful will be rewarded.

Hope to see you on April 8th and April 9th.

In God’s Love and praying for a miracle,

Phil and Amy

Friday, March 11, 2005

Hello Dear Friends and Family –

Phil, in an unsupervised editing session (haha), let the cat out of the bag that I (Amy) am the author and he (Phil) is the editor. So now that we’re all on the same page, I will no longer find it necessary to write in “third person”.

Funny enough, a day or so after we wrote our “upbeat” (is that possible?) email saying that the minor annoyances had subsided, the ants reappeared. Oddly enough it was in the guest bathroom. Clearly, I’m not doing an even passable job at housekeeping, but I promise, there was nothing in the bathroom for the ants to eat!! It was so ridiculous as to almost be funny. I suppose our humor has taken a turn to the dark side. Also, speaking of that, Conner’s hamster has disappeared. Yes, it disappeared in the house about 10 days ago. We had just given him a brand new palace of a hamster cage for Conner’s birthday. Jackson left the lid off and now he is nowhere to be found. It’s really quite unbelievable. We have set a “hamster” bait trap, as recommended on the internet, with no luck. We are waiting now to find him by the smell. ?????????????????/

Dylan got the flu last weekend. As we put him to bed Thursday night (3/3), he threw up everywhere. In the night, he got a fever. Friday morning, we asked our nurse about getting him some Tamiflu, which she promptly did. We think that really helped. He had a fever Friday and threw up once and again in the night, but he had hardly eaten at all. Saturday his fever broke and he started eating again. We were so grateful that he didn’t go a week with hardly any food or drink, like the last time. He is doing much better, but still congested and coughing. We have been extremely careful about where we take him and even where we let the kids go. None of us had been sick, and Dylan had hardly left the house, and he still got sick. His immune system is clearly compromised. Our only comfort is that we did everything we possibly could. We find it imperative that we not have any regrets about any decisions we make.

Pastor Rick’s sermon on Sunday really struck a cord with us. The title was “TRIVIAL PURSUITS: LETTING GO OF WHAT IS UNIMPORTANT”. We often talk about how unimportant nearly EVERYTHING is. We often say “Who Cares??!!??” Our purpose is to worship and glorify God. That is why we are put on earth. That is why Dylan is here. It makes it no less painful for us to know his lifetime may be so short, but we take comfort in knowing how that his life has touched many, many people. Pastor Rick’s sermon sent us back to “The Purpose Driven Life” by Rick Warren. Here are the parts/quotes that touched us in our situation (knowing, of course, that we still pray for a miracle):

+ Your earthly body is just a temporary residence for your spirit. The Bible calls your earthly body a “tent”, but refers to your future body as a “house”. (We are comforted to know that Dylan’s body in heaven will be restored and perfect and he will be “dancing with the angels”.)
+ When you fully comprehend that there is more to life than just here and now, and you realize that life is just preparation for eternity, you will begin to live differently. You will start living in light of eternity, and that will color how you handle every relationship, task and circumstance. Suddenly many activities, goals, and even problems that seemed so important will appear trivial, petty, and unworthy of your attention. The closer you live to God, the smaller everything else appears.
+ When you live in light of eternity, your values change. You use your time and money more wisely. You place a higher premium on relationships and character instead of fame or wealth or achievements or even fun.
+ In heaven we will be reunited with loved ones who are believers, released from all pain and suffering, . . . . .
+ You may feel it’s morbid to think about death, but actually it’s unhealthy to live in denial of death and not consider what is inevitable. Only a fool would go through life unprepared for what we all know will eventually happen. You need to think more about eternity, not less.
+ If you have a relationship with God through Jesus, you don’t need to fear death. Rather than being the end of your life, it will be your birthday into eternal life.

Phil was just tickling Dylan on the floor and Dylan was cackling, and laughing and snorting. There is no more beautiful and bittersweet sound in the world to us. Those of you who have heard it can attest to that. We want to bottle it and keep it forever, like a favorite perfume that you can bring out whenever you want. I have just realized that God must feel the same way about our praise and worship. It is such a precious sound, yet bittersweet. He must wonder why we don’t do it more, when He loves us and treasures us and wants to be with us. The way that we feel about Dylan . . .

Phil just wrapped up putting out his advertising deck, as the business has not sold. The goal was to break even, and with the help of the corporate office in Atlanta, he not only got out a full deck, but was able to cover the costs. So we are grateful for that, although past ready to have the business sold. You may receive it in the mail in early April. It is a color postcard deck by “City Publications of Nashville”, sent to 50,000 homes in this area. We put in a card for “Hunter’s Hope” to raise awareness of this disease, and the importance of newborn screening. Dylan’s photograph (Photography by Charlotte) is on the postcard. We are hopeful that some will be touched enough to look at Dylan’s website, and know that our God is alive, even “when bad things happen to good people”.

Phil is having his third and final epidural steroid injection on Monday. We are hopeful that he will find relief and not have to live like this indefinitely. It seems that his back problems have been going on forever. It has been over 5 months. We now realize that we have been living with this devastation (related to Dylan) for over 6 months, including the search for what was wrong. It seems like forever, and yet there is no end in sight. We are so grateful for the myriad of ways that people have and continue to help us. Thank you all so very much. Without it, we likely could not go on.

Please do continue to pray for us. Here are our requests, much the same as they have been:

+ For Dylan's MIRACLE to restore his health.
+ That Dylan will not suffer.
+ For Phil's back pain.
+ For our stress level to be reduced and protection from the little problems.
+ For protection against depression.
+ For hope for the future, that our family will somehow be ok.
+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.
+ Also please pray that Phil’s business will sell quickly (or less slowly, since quickly has already passed) www.citypublicationsofnashville.net).

You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We are putting some new photos there tonight, so please visit. We appreciate the signings in the guestbook. Feel free to do it often. The prayer pager number is 1-865-701-2794. Thank you so much for your prayers.

Still praying in complete faith of what our God is able to do - - -

Amy & Phil

Wednesday, February 23, 2005

Hello loved ones –

This has been a pretty good (relatively speaking) 10 days or so, so we wanted to hurry and get a note out before something changed. (Nothing like a little sarcasm, huh?). Anyway, we are grateful to have a time period free from the extra annoyances (i.e., the ants are in a truce, the refrigerator is running, doorbell works again, the bird and the mouse living in the garage are now part of the family, etc).

Dylan has been sleeping much better for the last week or so. He really has huge variances, and we’re on a good swing, so we are grateful. However, it is midnight, he is sleeping peacefully, and at least two of US are not! Did you know it is physically impossible to “cry yourself to sleep”? When you cry, the nose gets all stuffy, and you can’t sleep if you can’t breathe! So you get up to blow the nose, lay down, let the sinuses drain until you can breathe again, and try (if in vain) to think of something that doesn’t make us cry. That is tonight. Phil got up at 12:45 since he couldn’t sleep and found Amy in the office working on this note. At least a few minutes of quiet time together!

Someone asked Amy once, “Do you cry every day”? Absolutely. Not all day, but certainly every day. It’s hard to predict what will bring us to our knees, at least on the inside. Remember the children’s song - - -
You are my sunshine, my only sunshine.
You make me happy, when skies are gray.
You’ll never know dear, how much I love you,
PLEASE DON’T TAKE MY SUNSHINE AWAY!!!
That song became a prayer for us. The simplest thing can have new and painful meaning.

Not to say that there are not moments of joy, because there are. The biggest joy we’ve had in quite awhile was Conner’s birthday party last weekend. Jennifer, we just can’t thank you enough. She planned and created the whole “Pirate Event”. It was truly the cutest, most precious party we have ever seen. It started with hand-delivered invitations, messages in a bottle, complete with treasure map and burned edges. The pirates got their little mustaches painted on, walked the plank to get their swords (over actual water), and played games until their outfits were complete with pirate hats, pirate sashes, eye patches, and pirate tattoos. Conner is at the most precious age and he was the cutest pirate in the whole world (no offense intended to the other little pirates around!). The cake was a pirate ship with milk dud bombs and burning Swiss Roll cannons. It just couldn’t have been any better, thanks to Jennifer. Our family, on the other hand, just barely managed to show up on time.

Phil had another epidural steroid injection in his back yesterday. He is still in the “it made it worse” stage, but hopes to be much better in the next few days. He is still struggling to meet deadlines at work, while trying to get out his City Publications advertising deck (which is advertising sales to mostly specialty home improvement businesses). The deck is coming along. He has found that the ads are much easier to sell at a break-even/loss than to actually make a profit. Imagine that. Not a recommended business model for others to follow though.

Alan Pace correctly noted that the “adrenaline must be worn off by now”, and it’s true. We are in for a long haul. Our suffering has no end in sight, unless God performs the miracle we so desperately pray for. Please do continue to pray for us. Here are our requests:

+ For Dylan's MIRACLE to restore his health. Our God is a big God and he can create this little enzyme that Dylan needs.

+ That Dylan will not suffer.

+ For Phil's back pain.

+ For our stress level to be reduced and protection from the little problems.

+ For protection against depression.

+ For hope for the future, that our family will somehow be ok.

+ For Jackson and Conner, that we can give them the love, words, comfort and time that they need.

+ For physical and emotional strength, and relief in sleep for us and for Dylan.

+ Also please pray that Phil’s business will sell quickly (or less slowly, since quickly has already passed) www.citypublicationsofnashville.net).



You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. The prayer pager number is 1-865-701-2794.

Thank you so much for your prayers. (So which ones of you are up at 12:34, 12:36 and 12:38 a.m. praying and paging? Thank you. We heard it. :)



Agreeing with many, many people for Dylan's miracle - - -

Amy & Phil



p.s. from Phil (Amy is in bed now, so she can’t stop my editing!) – it breaks my heart almost as much to see Amy suffer through this as it does for Dylan to go through it. However, her faith in God, her love for Dylan and his brothers, and her love for me is tremendous and unbelievable. The old cliché about a great woman behind every decent man couldn’t be more true in my case (ok, yes, I’m assuming I’m decent for now). So many people/professionals have warned us about the effects of an illness like this on our marriage. While I’m sure it is true, I can’t imagine anything worse than losing my wife after losing my son. While we have a closeness now that is stronger than ever (but maybe not in a good way, or least not as a result of anything good, if you know what I mean), please keep our marriage in your prayers also. Thanks to all of you for the many things you do each day to help us.

Saturday, February 12, 2005

Dear Friends and Family - -

It is great to be able to say that this has been a better couple of weeks for Dylan. He climbed back onto his "plateau" and is doing well (considering). He is eating well and has gained all of his weight loss back! Yeah! He is still hooked on his favorite - homemade macaroni & cheese. He has lost some strength in his legs, though, and doesn't want to hold his weight on them like he did before.

We took Dylan to the zoo last weekend. He really enjoyed it. He loves to be outside and enjoyed the petting zoo and watching all the kids. We are trying to concentrate on enjoying our time together and giving him the best life possible. We put up a couple of pictures from the zoo trip on the caringbridge web page.

Dylan saw a Pediatric Opthamologist at Vanderbilt before he was diagnosed with Krabbes. We had a follow-up appointment scheduled for this past Tuesday. We wanted to still take him, even knowing what we know, because we feel that his eyesight is his greatest strength, the way we connect with him, and we want to do all we can to protect it. We had assumed the appointment would be routine, but it turned out to be quite traumatic for Amy. Amy's friend Natalie went with her to the appointment, thank goodness. This is a doctor that we respect and hope that these words are not his usual bedside manner. The doctor looked up some information about the disease and came back to say something like, "When he loses his eyesight, his neurological problems will be so overwhelming that it won't matter. So that should provide you with some comfort.". Amy was crying (as always) and said "I don't find that comforting". The doctor made another attempt at "reassurance" by saying that Dylan's neurological problems would be so overwhelming that he would not be afraid/aware of being blind. Amy touched him and said "There's nothing you can say that will comfort me. That's ok". The doctor said "I won't need to see him again, but feel free to call me if you have any questions". It felt so dismissive, as though we should take our child home to die. It was really awful. After spending another more than half a day at Vanderbilt, we were grateful that we don't have many doctors appointments outside the home anymore.

It is hard enough to try to fathom this situation as an adult. But imagine having to answer the innocent questions of a child. This week, Conner asked "Will we have to give Dylan's other clothes away?". Then, "Will he be naked in heaven?". Amy told him that she didn't know if we would have clothes in heaven or not, but that God would give us everything we need. Conner replied, "Well, one time I prayed and Gold told me that we don't have clothes in heaven". In the same conversation, Conner said, "Will Dylan go up in the sky some night?". Amy told him that we don't know if it will be in the nighttime or daytime. Conner said, "Maybe when God comes, we'll get to see him. IF he comes in the daytime.". Conner's last comment about Dylan that day was "Dylan is the best family I ever had and I don't want him to die ever, ever again". It tears our hearts because we feel Conner & Jackson's pain also.

Phil and Amy are both sick with a nasty cold. Dylan has had 3 terrible nights of sleep in a row. So we are physically exhausted and quite grumpy. Phil also has his back problems to contend with. In addition, Phil has an incredible amount of work pressure and stress. We have been trying to sell the business, but it's now time to put out another mailing in his advertising business. If he doesn't get it out, it could devalue the business. So he is having to try to get out an advertising postcard deck, with the goal of just breaking even, or trying to minimize the loss, since he doesn't have time to actually do a good job at it, while working under a financial statement deadline at the toy company.

Please continue to pray:
+ For Dylan's MIRACLE to restore his health.
+ That Dylan will defy all the odds of losing his smile and laughter.
+ That Dylan will not suffer.
+ For Phil's back pain, and wisdom to decide what to do next, in light of health insurance issues.
+ For our stress level to be reduced and protection from the little problems.
+ For protection against depression.
+ For hope for the future, that our family will somehow be ok.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.
+ Also please pray for us as we work to sell Phil's business (www.citypublicationsofnashville.net) . It would be a really nice thing if he could actually be rewarded for his efforts in this next mailing, rather than incurring a loss.

Thank you so much for your prayers. You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. The prayer pager number is 1-865-701-2794.

Continuing to petition God for Dylan's miracle - - -
Amy & Phil

Saturday, January 29, 2005

Dear loved ones -

All of our weeks are hard now, but this was one of the very hardest. Jackson and Conner bounced back from their sinus and ear infections just fine. Dylan had a double ear infection and was so very sick. It's all heartbreaking, but this was excruciating. He hardly ate or drank at all for a week. He was feverish, lethargic, coughing, wheezing, crying and not sleeping well. We tried him on Amoxicillin and it just didn't seem to help. Amy was totally convinced on Sunday night that it was pneumonia (which is what ultimately ends most Krabbe's children's lives). Finally, after 4 days on the first antibiotic, we got him on Zythromax and that seemed to do it. As of Thursday night, he ate his favorite - macaroni & cheese and that was his first real meal in a week. His appetite is still not what it should be. He lost about a pound, and his weight probably wasn't on the chart to begin with. We were glad to have had Hospice involved, because we could get him checked at home and not have to run him into the germ-infested doctor's offices. January has been just as we dreaded. Dylan's ear infection gave us such fear that "this could be it", the thing he can't recover from, the time he loses his smile. But thank God, Dylan is still smiling and laughing.

Another loss this week - Dylan weaned himself. It's sad enough for Amy to know she'll never nurse another baby, the end of an era, but to have it end like this is just so sad. It would help if there could be hope for another baby someday . . . . but for several reasons, there is not.

Well, when it rains, it pours. It is just so frustrating to have to deal with huge life issues and still have to deal with the little crap too. Our most recent "thorn in the side" has been an infestation of ants in the kitchen. We called the pest control service, and they wanted us to leave the ants alone until they got here late in the afternoon. Now this may sound stupid, but imagine having hundreds of ants on the counter, and not be able to clean them up. Just makes you want to scream!!!!!!! They came out and we got the "you can't leave any crumbs on the counter" lecture. Yeah, right. The bug man has been out again, and the ants have receded. If we could just call a truce with them. We'd be happy to feed them if they'd just stay in their hole. . . .

All that to say, it sure feels like Job's life. In studying Job's life, we find that Job never blamed God. The famous quote "The Lord giveth, and the Lord taketh away" came from Job's mouth. He had 10 children who died, he lost all of his animals/wealth. In the end, Job was "restored". He had 10 more children and his animals/wealth were doubled. The issue that the Bible does not address in Job's "restoration" is - what happened to Job's broken heart?

The steroid injection in Phil's back helped, but he will need at least one more. It turns out those cost $1,700! He is going to try to wait until Feb 15 for the next one, so that it will apply to his deductible, which is $3,000!! We have been so spoiled to have had world-class health insurance for our whole careers, until Phil & Sony parted ways. But we are also grateful to at least have health insurance.

We continue to be blessed in many ways. The meals are truly a God-send. They give new meaning to the prayer "Thank you for this meal and bless the hands that prepared it". Teresa and Aimee - thank you SO SO SO much for the beautiful Creative Memories album of Dylan's life. It is just gorgeous and we will treasure it forever. Our friend Natalie has been a real blessing to us - she is coming over once every week to fold all our clothes! Also, another friend is going to produce a professional video of Dylan's life. In our time of sorrow and stress, we are so thankful for all of you people who help us put one foot in front of the other, each and every day.

Please continue to pray:
+ For Dylan's MIRACLE to restore his health.
+ That Dylan will defy all the odds of losing his smile and laughter.
+ That Dylan will have regain his appetite , and regain his weight. He looks so frail.
+ That Dylan will not suffer.
+ For Phil's back, that this problem could be resolved at last.
+ For our stress level to be reduced and protection from the little problems.
+ For protection against depression.
+ For hope for the future, that our family will somehow be ok.
+ For physical and emotional strength, and relief in sleep for us and for Dylan.
+ Also please pray for us as we work to sell Phil's business (www.citypublicationsofnashville.net) . Phil has had a couple of meetings with potential buyers, but so far, they are neither a go or a no. Please pray that a deal will go through!

Thank you so much for your prayers. You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. The prayer pager number is 1-865-701-2794.

Continuing to petition God for Dylan's miracle - - -
Amy & Phil

Thursday, January 20, 2005

Dear Friends and Family -

It is unbelievable that one year ago last Sunday, we were at Baptist Hospital experiencing a time of pure joy - Dylan's birth. It was such a wonderful day. The birth was much easier than the other 2, we'd been through this before, and we just enjoyed the whole process. Dylan was such an incredible gift to us and we were overjoyed.

Dylan's birthday was this past Sunday. We went to the Aquarium in Chattanooga on Saturday to celebrate with friends who have a son 3 months older than Dylan. Dylan LOVED the aquarium!! Whenever he likes something, his eyes get big and he opens his mouth really wide. It was so precious to see him enjoy the fish and just be mesmerized by the whole experience. A friend from Sunday School had made Dylan a beautiful fish cake for his birthday. We ate at Q-doba after the Aquarium and had the place nearly to ourselves. We sang Happy Birthday, ate birthday cake and opened his presents. It was best it could have been, given the circumstances. It was an experience we will always, always cherish.

Phil's MRI showed that the discs were not ruptured, which was great news. The doctor thinks he has "chemical sciatica", due to degeneration of the discs. The discs release a chemical which causes the nerve pain from his back all the way to his ankle. Phil received a steroid injection in his spine on Monday to try to help his back pain. The pain increased for 24 hours. The pain has now moved mostly from his hip, thigh, calf and ankle to his back. He was told that the further the pain spreads from the source the worse it is. The pain has now returned to his back, which we are taking as a good sign, albeit no less painful yet.

The boys are all sick this week. Jackson went to the doctor on Tuesday, and he has a sinus infection. Conner went to the doctor on Wednesday and he has an ear infection, with cold & fever. Dylan started feeling bad in the night and he saw his nurse today. He has an ear infection, cough & fever. It was so scary when Dylan got sick in the night. He was crying & coughing and kind of threw up and it was hard to tell if he was breathing. He had such a look of fear in his eyes. It was really heart wrenching.

It may seem like an obvious choice until you consider the ramifications, but we have decided to fervently pray that Dylan will not suffer (if God is not going to heal him). This means that Dylan could die sooner to be able to avoid the suffering. How can we be expected to make this choice? However, we just don't think we could stand to watch him suffer and be in pain. So far, we have felt fortunate that Dylan's condition has not deteriorated more rapidly. But we are so afraid that it is just around the corner. We have been warned that he might not bounce back from minor illnesses, like he has now.

There is a show coming on TV on Sunday night that we hope will raise awareness of Krabbe Disease. It is on ABC on Sunday night at 7pm CST - a family (The Sears family) whose teenager has the late on-set version of Krabbe is getting a home makeover on Extreme Makeover: Home Edition. Hunter's Hope recently sent out a press release regarding the show and Krabbe. The mission of Hunter's Hope (founded by former NFL player Jim Kelly, whose son also has Krabbe disease) is to raise awareness, fund research and to lobby for more advanced newborn screening See www.huntershope.org to learn more about the organization.

We are grateful for the many ways that people have supported us. Thank you, each and every one.

Here is prayer pager number. 1-865-701-2794 There will not be a prompt, but if you dial in your zip code, we will know where people are praying from. People who have been to our house have been amazed at how often it goes off. It really is remarkable. Thank you for praying and for calling.

Here are our prayer requests:
+ Dylan needs a MIRACLE to restore his health.
+ That Dylan will defy all the odds of losing his smile and laughter.
+ That Dylan will have a good appetite and be able to handle his food, and maintain his weight.
+ That Dylan will not suffer. Please pray for wisdom for us as we make medical decisions to try to keep Dylan the most comfortable he can be.
+ Please say a special prayer for Phil's back, that these steroid injections will take away the pain completely.
+ For protection against depression, as we are in the midst of a bleak winter.
+ For hope for the future, that our family will somehow be ok.
+ For strength, and relief in sleep for us and for Dylan.
+ Also please pray for us as we work to sell Phil's business (www.citypublicationsofnashville.net) . Phil has had a couple of meetings with potential buyers, but so far, they are neither a go or a no. Please pray that a deal will go through!

Thank you so much for your prayers. You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. We will put a few pictures from Dylan's birthday celebration on the site tonight.

On our knees begging for Dylan's miracle - - -
Amy & Phil

Sunday, January 9, 2005

Dear loved ones -

Time has passed so fast. Dylan enjoyed his Christmas. He loved the packages and the kids and all the excitement. He continues to smile and laugh, and we hold tightly to that. However, he is starting to have some other issues. His appetite has really decreased. He seems to be weaning himself, but not substituting enough other liquid. He seems to still be handling his food well physically, but often won't eat or nurse. He is very opinionated about what he wants to eat - his favorite is "Angie's 'famous' macaroni & cheese". He can tell by the sight of a food that he wants no part of it. It is quite challenging to find foods that he will eat, and can handle physically, that are somewhat good for him.

We had quite a scare last week. We were told that Dylan was likely having seizures at night. We now believe it was "myoclonic jerks" or an exaggerated startle reflex, which was an extreme relief. He had 2 terrible nights where he woke up about 20 times. But then the sleep got much better and his sleep has actually been better than usual this week (probably due to the ladies of Mother's Touch praying specifically for this need). Dylan is getting more fussy. He used to be satisfied as long as someone was holding him. Now we sometimes have trouble calming him even when we are holding him.

Amy found Christmas to actually be depressing. We had been so built up with preparing for Christmas and hoping that Dylan's interaction would continue through Christmas. When Christmas actually got here, the realization set in that our situation has nowhere to go but worse, unless God heals Dylan. We found ourselves so filled with fear and dread of the future that it was hard to enjoy the holidays. January is always somewhat depressing - the weather, and the holiday let-down, but this year there is just nothing to look forward to. Life as we knew it is just over. It is heart sickening to face the future. The specialists in Minnesota were confident that Dylan's interaction would not continue past 13 months. Dylan's one year birthday is next Sunday (1/16). To think that we have such a short time left with his smile and laughter causes us indescribable pain.

Under the circumstances, we decided not to have a birthday party for Dylan. Dylan LOVES aquariums, so we are taking the family to the Aquarium in Chattanooga for a day, instead of a party. We are trying to build as many memories as possible for the boys with their little brother. We have to be careful how much we do because doing too much seems to be hard on Dylan. He does great while we are out, but it seems to take him a couple days to recover.

Dylan is almost a year old, but he seems like a little baby because of his physical limitations. It is incredibly painful for us to be around babies now - babies who sit up, crawl, hold their toys, hold their bottles, pick up their finger food. Our insides are screaming - "How can this be happening?"

Phil is still having constant trouble with his back. He is going to have an MRI on Monday. We are hoping that there will be some non-surgical intervention that will help him. It is so hard for him to do regular things (work, play with the kids) with this back pain, but now the stress is exponential.

We find the prayer pager comforting, as it goes off all day and into the night. Please call us at 1-865-701-2794 There will not be a prompt, but if you dial in your zip code, we will know where people are praying from.

At the risk of sounding like a broken record, please continue to pray for us:
Dylan needs a MIRACLE to restore his health.
That Dylan will defy all the odds of losing his smile and laughter.
That Dylan will have a good appetite and be able to handle his food, and maintain his weight.
That Dylan will not suffer. Please pray for wisdom for us as we make medical decisions to try to keep Dylan the most comfortable he can be.
Please say a special prayer for Phil's back, as he goes for the MRI. Please pray for wisdom for the doctors that there will be a non-surgical method to help him.
For protection against depression, as we face a bleak winter.
For hope for the future, that our family will somehow be ok. It is very hard to envision a scenario where we will be a happy family again.
For strength, and relief in sleep for us and for Dylan.
Also please pray for us as we work to sell Phil's business (www.citypublicationsofnashville.net) . Phil has had a couple of meetings with potential buyers over the past week. Please pray that a deal will go through! (Phil is working part-to-full time as controller for a toy company in Brentwood. We are very blessed that the owner is working with Phil to allow time for family, doctor's visits, etc. )

Thank you so much for your prayers. You can visit Dylan's website at www.caringbridge.org/tn/dylanmay.

On our knees begging for Dylan's miracle - - -
Amy & Phil

Thursday, December 23, 2004

Hello dear friends and family -

It's been 11 days since our last update. Dylan is continuing on his "plateau". We are grateful for his smiles and laughter and just pray they will continue. The thought of losing those smiles sends tears flowing like rivers . . . .

We just returned from celebrating Christmas with Phil's family in Evansville, Indiana. Dylan did well on the trip - he stayed healthy and slept a bit better. It was great to have time with the May family while Dylan is still communicating so well with us.

The specialists in Minnesota (Dr. Peters) just read and responded to Dylan's last MRI from mid-November. Dr. Peters was surprised that the disease in the brain did not appear more advanced, given Dylan's physical limitations. Phil told him how it had been almost 2 months since our visit to MN and Dylan was still completely socially interactive. Dr. Peters advised us that Dylan's interaction could be changed drastically by a single event (such as aspiration of food causing pneumonia or just a simple virus). We feel the fear and dread eating at our hearts.

We have realized that life is like the law of compound interest. Interest either works for you, or against you. It seems that our troubles multiply, as Job's did. When we are exhausted and stressed, then Murphy's Law prevails. For example, many of you know that our refrigerator recently broke down. It was only 4 years old and this was the 4th time it had problems. So we got a new refrigerator, which consumed an entire weekend. We got the new fridge all cleaned out and restocked. A week later, one of us (we won't mention who!) spilled an entire 1/2 gallon of orange juice all inside the refrigerator. Now obviously that in itself is not all that serious, but we find simple frustrations about to send us over the edge! Amy dropped a jar of babyfood and squash splattered all over the kitchen. Conner accidentally broke the glass in a large picture frame on the wall. As Amy cleaned it up, the cabinet door feel off in her hands. It just seems like it's always something these days. Anyway - all that to say, it seems that troubles multiply and our frustration, stress and exhaustion is growing.

In studying the Psalms, we found this verse:
Then they cried to the Lord in their trouble,
and he saved them from their distress.
He brought them out of darkness and the deepest gloom
and broke away their chains. (Psalm 107:13-14).
That was a verse to cling to, but then reading on, it got even better:
Then they cried to the Lord in all their trouble,
and he saved them from their distress.
He sent forth his word and healed them;
he rescued them from the grave. (Psalm 107:19-20)
So we are clinging to God's word for survival.

Our study Bible has the following to say about troubles:
"Our troubles can be helpful because they
1) humble us
2) wean us from the allurements of the world and drive us back to God
3) vitalize our prayers
4) allow us to experience more of God's faithfulness
5) make us more dependent upon God
6) encourage us to submit to God's purpose for our lives, and
7) make us more compassionate toward others in trouble. "
We certainly feel God working in our lives. We would just encourage you to allow God to work in your lives using OUR troubles. If you can allow God to work in your hearts, maybe you can be spared from some troubles of your own.

As devastated as we are, we know it could always be worse. We know of some families who lost their marriages to this disease. Also, some of those were abandoned by their church and friends in their time of need. We just cannot fathom going through this alone, and we know we do not. We humbly thank you all for the many, many ways we have been touched and helped.

Please call us on our prayer pager. 1-865-701-2794 Please don't forget to dial the 1. Apparently there is an older lady at 865-7012 who is very tired of answering wrong numbers, poor thing. There will not be a prompt, but if you dial in your zip code, we will know where people are praying from.

Please pray for us:
+ Dylan needs a MIRACLE to restore his health. We can't give up on the miracle. What could bring more glory to God?
+ That Dylan will stay healthy and happy for his first Christmas.
+ That Dylan will eat well - have a good appetite and be able to handle his food, and maintain his weight. (He hasn't gained any weight in over 2 months).
+ Please say a special prayer for Phil's back. The steroids did not help. He is taking pain medicine, but it is not improving. Having surgery right now is nearly physically impossible, as the recovery would be about 6 weeks (with no picking up Dylan!).
+ For protection against depression and general irritability.
+ That we will have financial stability .
+ For strength, and relief in sleep for us and for Dylan.
+ Also please pray for us as we work to sell Phil's business (www.citypublicationsofnashville.net) .. Many of you know Phil is working part-to-full time as controller for a toy company in Brentwood. We are very blessed that the owner is working with Phil to allow time for family, doctor's visits, etc. We are unable to make the time commitment now to grow Phil's business and have decided to try to sell it. Removal of this burden would really help us now.

Thank you so much for your prayers. You can visit Dylan's website at www.caringbridge.org/tn/dylanmay.

Merry Christmas to you all. Please hug your children and enjoy those precious moments.
With love and hope for a miracle during this season of miracles -
Amy & Phil

Sunday, December 12, 2004

Hello everyone -

We hope your holidays have thus far been filled with joy. This is a concerted effort to not be a "downer" and thus, lose our audience . . .

Anyway- - - Our church recently obtained a "Prayer Pager" for us. Their idea is "When you think of or pray for the patient, page them at this number to let them know" 865-701-2794. We cannot tell you what an uplift this has been. Darlene sent out the word to the Mother's Touch Bible study and those troops hit the phone lines! It was a tangible, physical encouragement to us. The pager vibrates and we know that someone has prayed for us. All along, we have felt that people were praying, but this is physical proof that we are not alone. We are being lifted up in prayer moment by moment. Amy resolved to say "Thank you God" every time the pager went off and it put her in a continuous mode of thanksgiving, which otherwise would have been impossible. Jackson and Conner would hear the pager vibrate, and sing out "Someone is praying for us!!". It was so sweet. So please, send us a page when you pray!

The benefit concert that Debra Soule and her friends put on went great. She sang "Song for Dylan" to a full house, then rocked out with her Christmas tunes. Thank you so much, to all who made that concert happen. She is still donating all the proceeds from her Christmas cd to Dylan's trust fund. If you would like to check it out, the site is www.debrasoule.com ..

We had a photography session a month or so ago with a man named Joe Craig. He came at the request of a couple in our Sunday School class. He drove 5 hours to our house just to take photographs of our family. Joe believes that photography can be healing. He does sessions in cancer wards and with others who need hope. Joe told us that he is not extremely religious, but preparing for our session was the most religious experience he'd had since taking communion in the Holy Land over 20 years ago. We were touched that he felt God's power working through Dylan's life. This was the most amazing session we have ever experienced. Joe focused on Dylan and we were to just interact with him. Mostly we were just playing with Dylan. We had music playing and the song "I Can Only Imagine" by Mercy Me came on. If you are not familiar with the song, it's a must have! Amy sang the song to Dylan with tears streaming down her face, as the song talked about heaven. Dylan loved it. It was a beautiful time together and the images show it. If you would like to view them, you can see them on-line:

Go to: www.eventpix.com
Log in as an "event guest"
Hit "search for a recent event"
Search under photographer's last name of "craig"
You will see "Dylan" as the file
Password is "Nashville" (case sensitive)

We will be going out of town this weekend, but will be in town for Christmas. We hope to have a special memory-making holiday for our family. We hope you do also.

Please continue to pray for us:

+ Dylan needs a MIRACLE to restore his health. We can't give up on the miracle. What could bring more glory to God?
+ That Dylan will stay healthy and happy for his first Christmas.
+ That Dylan will eat well - have a good appetite and be able to handle his food, and maintain his weight. (He hasn't gained any weight in 2 months).
+ Please say a special prayer for Phil's back. The steroids did not help. He is taking pain medicine, but it is not improving. Having surgery right now is nearly physically impossible, as the recovery would be about 6 weeks (with no picking up Dylan!).
+ For protection against depression and general irritability.
+ That we will have financial stability .
+ For strength, and relief in sleep for us and for Dylan .

Thank you so much for your prayers. You can visit Dylan's website at www.caringbridge.org/tn/dylanmay.

With love and hope for a miracle during this season of miracles -
Amy & Phil

Thursday, December 2, 2004

Hello everyone -

It has been awhile since our last update. Dylan got over his cold and had a good week last week. He seemed to have less tone (stiffness) in his arms and legs, and was more active with his hands and wanting to play. It was such a pleasure to watch, as we are trying to be grateful for the little things. We want to enjoy every second that we can with him. This week, he has had a hard few days. He has not been resting well for his naps. He gets tired and it seems to have a "snowball" effect on his motor functions and ability to eat. It has really hit home for us how hard it will be to see each decline. On the other hand, we are wary of false hope. Dylan is still completely mentally alert, laughing and smiling. It is incredibly bittersweet.

We are so grateful to all the people who have helped us, in a myriad of ways. We would like God's kingdom to be glorified, by everyone knowing how the Body of Christ has come together with such creativity:
+ Two friends from our Sunday School class actually planned and orchestrated Jackson's "Pokemon" birthday party, knowing that we would not have the time to prepare a special party for him. (He turned 7 on Nov 30th). This is such a critical time in Jackson and Conner's lives. That certainly made him feel special.
+ We had several offers of Thanksgiving dinners and joined some friends in their celebration that day.
+ Our neighborhood had a huge yard sale and donated all the proceeds to Dylan's trust fund (for medical bills).
+ Other people have made contributions to Dylan's trust fund. We are not allowed to know who has contributed, because of the banking privacy laws. It seems terrible to us to not be able to send a thank you note to these people. We are sorry for that. You know ho you are, even though we don't. Thank you so very very much.
+ A friend is preparing a special creative memories album of Dylan's life. That will certainly be one of our treasures for the rest of our lives.
+ People have brought meals, shopped for groceries, run errands, cleaned the house, taken Jackson/Conner out for fun activities, come in to watch Jackson & Conner while we get some things done around the house, provided gift certificates for meals and fun things for the kids, and mowed the yard and completed other yard work for us. Many of those people either just met us or have never met us before.
+ A friend arranged for a special photographer to travel five hours (one way) to visit our house and take photos of the family in a very meaningful and emotional manner.
+ A friend offered to give us massages, to help us relax and sleep better.
+ Others have offered to help with Christmas shopping, and other errands.
+ Friends and family have spent such valuable time with us - helping us with their hands and holding us in their hearts.
+ Of course, there is the song, written by Debra Soule, that touched us to our very souls.

These selfless acts of kindness are the glue that keeps us together. Truly, we know that God is working, however badly we wish it weren't necessary.

This weekend is Dylan's "benefit concert" by Debra Soule. She is the one who wrote the "Song for Dylan". If you haven't actually listened to it, we know that it would touch your hearts. You can launch it by either visiting our caringbridge website (link is below) and clicking on the link to the song at the bottom of the home page, or by visiting Debra's website (link is below). Debra is not only donating all the profits from the concert at the Franklin Mercantile, but she is also donating all the proceeds (not profits, but proceeds!) from sales of her Christmas CD (at the concert and online) to Dylan's trust fund. For more information about either the concert or Christmas cd, you can link to Debra's site at www.debrasoule.com. We continue to be in shock and awe at the way Dylan has touched people's hearts. God then uses people to do his work in ways we could never have imagined.

We have been completely immersed (and it feels like drowning) in the medical world. We have had up to 4 appointments in one day. Dylan has 3 physical therapy appointments per week. Then we add in at various times the hospice nurse, hospice doctor, TIPS coordinator, hospice social worker, grief counselor for the children, pediatrician and a feeding specialist. To say that we are overwhelmed would be an understatement.

Thankfully, Phil has been able to cut his work schedule back to 30 hours/week. This allows him to be more involved with Dylan and his care, and Jackson and Conner. It has been a huge help for Amy.

Phil finally had to break down and see the doctor about his back today, as the pain has gotten worse this week. He received a steroid injection, a steroid pack and some pain medicine. The doctor wanted to do an MRI, but Phil declined, as he would not want to do surgery now, even if it were indicated.

Please continue to pray for us:

+ Dylan needs a MIRACLE to restore his health. We can't give up on the miracle. What could bring more glory to God?
+ That Dylan will stay healthy and happy for his first Christmas.
+ That Dylan will eat well - have a good appetite and be able to handle his food, and maintain his weight. (He hasn't gained any weight in 2 months).
+ For protection against depression, as the losses continue.
+ That we will have financial stability .
+ For strength, and relief in sleep for us and for Dylan .
+ Please pray for Phil's back. Please pray that the steroids will help and no further treatment will be necessary.

Thank you so much for your prayers. You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. Many people have emailed their interest in seeing more photos of Dylan and the family. You can visit us our site with more photos at at http://home.comcast.net/~phildmay/wsb/index.html. Thank you all for keeping track of Dylan's progress on the website. The fact the website has been visited over 11,000 times in the past 7 weeks is a huge encouragement to us. We are also blessed my the guestbook entries and the testimonials of what impact Dylan is having on the lives of others-- friends, family and strangers.

With love and sadness -
Amy & Phil

Sunday, November 21, 2004

Hello loved ones -

Dylan had a couple of terrible nights of sleep this week, which made it hard for Amy to function. He has a little cold and just doesn't feel well. This was the first time he really felt and looked "sick" to us. He is starting to have some issues with eating. We can no longer feed him pizza, which was one of his favorites, because he chokes. We pray that he bounces back to his previous state of health (if it can be called that) and can enjoy Christmas.

We had a negative emotional milestone this week because we started services with Alive Hospice. We have heard wonderful things about them, but mentally it is hard to take. Hospice is for grandparents, not babies. And certainly not OUR BABY!! Our hearts just scream at the thought. Practically speaking, it will be a good alternative. We will have a nurse that we can call 24 hours/day. She will make visits 1-2 times/week and can increase up to 5 times/week if we need it.

An additional loss this week was Conner being diagnosed with asthma. He had some breathing problems last year and had a nebulizer for when he was coughing or wheezing. It has been getting increasingly worse this fall and he had a full-blown attack on Wednesday. Thank goodness Miss Betty was here to keep Dylan, so Amy could take Conner in to the doctor. He was almost sent to the emergency room. Conner will now have to take medicine twice daily. Also, our insurance does not cover anything related to Conner's breathing issues (doctor visits, medication, potential emergency room visits) as it was pre-existing.

We both just feel like screaming- ISN'T THIS ENOUGH? Do we also have to deal with all these other worries? Really, just isn't this enough?

We know that the purpose of all of our lives is to bring glory to God. It seems that Dylan is accomplishing his purpose in life. We know that Dylan has touched many, many lives in ways that we never could have. We appreciate those of you who have told us so. While this can hardly be called "comfort" to us (because there is no comfort right now), at least we know that there is good happening in our midst. We are still hoping and praying with all our might that the way God will be glorified, is by healing Dylan so that he can tell his own story of God's glory.

A friend gave us a CD of Casting Crowns. This song VOICE OF TRUTH really spoke to us:
(Our "Giant" is this situation with Dylan)

Oh what I would do to have
The kind of strength its takes to stand before a giant
With just a sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they'd have had the strength to stand

But the giant's calling out my name and he laughs at me
Reminding me of all the times I've tried before and failed
The giant keeps on telling me
Time and time again, "Boy you'll never win!"
"You'll never win!"

BUT THE VOICE OF TRUTH TELLS ME A DIFFERENT STORY
THE VOICE OF TRUTH SAYS "DO NOT NOT BE AFRAID!"
AND THE VOICE OF TRUTH SAYS "THIS IS FOR MY GLORY"
OUT OF ALL THE VOICES CALLING OUT TO ME
I WILL CHOOSE TO LISTEN AND BELIEVE THE VOICE OF TRUTH.

Several people have inquired about our Thanksgiving plans, to make sure we had somewhere to go and someone cooking. Thank you for that thoughtfulness. We are going to our friends, the Bussards. We feel guilty, because being THANKFUL seems so remote right now. Please, as you sit down for Thanksgiving, be thankful for your children and their health. Please say a little prayer for Dylan as you do.

Please continue to pray for us:

+ Dylan needs a MIRACLE to restore his health. We can't give up on the miracle. What could bring more glory to God?
+ That Dylan will recover from his cold, and stay healthy and happy for his first Christmas.
+ That Dylan will eat well - have a good appetite and be able to handle his food, and maintain his weight. (He hasn't gained any weight in 2 months).
+ For protection against depression, as the losses continue.
+ That we will have financial stability .
+ For strength, and relief in sleep for us and for Dylan . We just thought we weren't sleeping well before. . . .
+ Please also pray for Phil's back, as he continues to struggle with the back pain. It has been over 6 weeks of daily pain.

Thank you so much for your prayers. You can visit Dylan's website at www.caringbridge.org/tn/dylanmay. Many people have emailed their interest in seeing more photos of Dylan and the family. As such, we are also setting up a website where we can periodically place more photos of our family, because we can only put 3 on the caringbridge site. You can visit us there at http://home.comcast.net/~phildmay/wsb/index.html

Have a Blessed Thanksgiving.

Amy & Phil

Saturday, November 13, 2004

Hello friends, family and those hundreds of you that have contacted us and are praying with us, yet have never met our family - Thank you all for your prayers.

Nancy Guthrie (author of HOLDING ON TO HOPE) emailed me this week. Her comment was so true - we are facing a series of losses. Each one is incredibly painful. It is so hard to have to deal with loss after loss after loss as we go through this.

This week, our loss came in the form of Dylan's MRI. We were able to have the MRI on Tuesday, which was a direct answer to prayer, as we did not want to have to wait 2 more weeks until Thanksgiving. Dylan did fine with the MRI. We waited with baited breath, hoping that the disease was not in his brain, since it did not show up on his 9/15/04 MRI. We received the news on Wednesday that his brain is now showing signs of the disease. While our minds knew it must be there, we had still been "holding on to hope".

It is so hard to grasp this devastating news, as Dylan is so interactive. He smiles and laughs. We fully believe there is something unusually engaging about his smile. He just draws people in. Even those who don't know of his disease constantly comment on what a beautiful smile he has. He can be such a flirt. But his body is clearly not cooperating with his mind. He tries so hard to do things and can't get his hands to do what he wants them to do. It hurts so much to see him frustrated. We try to let him know that we would do ANYTHING to change this for him. It is such a powerless, pathetic feeling to not be able to help your child.

We are having trouble keeping up with answering email. Amy usually reads it with Dylan on her lap and, but is not able to type with one hand to reply. So please, if you have asked a question, do not hesitate to email again if we have not answered you. Some of them get scrolled up and it's hard to stay organized.

Psalm 86:17a says "Give me a sign of your goodness". The note for that verse in our NIV Study Bible says "It is right to pray for a sign of God's goodness. As David found, it may be just what we need. But let us not overlook the signs he has already given: the support of family and friends, the fellowship of other Christians, the light of each new day. And we can be confident that he knows our situation no matter how desperate it becomes, and he cares. " Those words spoke to us. We are thankful for each day with Dylan.

God has certainly done many good things for us during this time, using his servants here on earth. We continue to be astounded at the many ways people have blessed us. This week, we received a song written for Dylan by Debra Soule. The title is "Song for Dylan" and the words are written below. Debra has posted the song on her website for us, because we can't put that kind of file on our site. This link will launch the MP3 file: http://www.debrasoule.com/SongForDylan.mp3. This song has touched us to our very souls. Thank you, Debra.

SONG FOR DYLAN

This road I travel on
I did not choose for my own
This valley, deep and wide
I will only cross through by your side

This child so loved, so deep
Will you forever keep
Please hold him in your care
And show him the ways you are there
Please show him the ways you are there

Lord I praise you for this little one
And I praise you for the things you've done
And I see your love through his sweet sweet smile
And I thank you for this little while
And I thank you for this little while

I may not understand
But I trust it's in your hands
As I kneel before your throne
I know I don't face this alone
I know I don't face this alone

Lord I praise you for this little one
And I praise you for the things you've done
And I see your love through his sweet sweet smile
And I thank you for this little while
And I thank you for this little while

Lord, you've felt this pain I feel
This sorrow was your own
Your Son died to bring mine hope
Even when you call him home

Lord I praise you for this little one
And I praise you for the things you've done
And I see your love through his sweet sweet smile
And I thank you for this little while
And I thank you for this little while

Please continue to pray for us:

Dylan needs a MIRACLE to restore his health. We can't give up on the miracle.
For protection against depression, as the losses continue.
That our family will find a sense of peace and a new acceptable "normal" within this tragic period.
That we will have financial stability and the wisdom to make decisions that we will live with forever.
For strength, and relief in sleep for us and for Dylan, who is not sleeping well.
Please also pray for Phil's back, as he continues to struggle with the back pain.
That in the coming days/weeks, Dylan will have no pain, will continue to eat well, and will never lose his precious smile.

We love you and thank you for your prayers. Thanks also for visiting Dylan's website at www.caringbridge.org/tn/dylanmay. The words of encouragement added to the website guestbook bless us and give us the strength we need some days just to keep moving. We have put up new pictures on the website today.

Amy & Phil

Saturday, November 6, 2004 10:51 PM CST

Hello dear friends and family -

We would both like to come to you with an update on Dylan that was even a little encouraging, rather than so sad. This has been another terrible week for our family.

Please know that each of these thoughts should be preceded by "Unless God intervenes . . . "

We went to Minnesota on Sunday and returned mid-week. We were right to dread the trip. It was every bit as difficult as we expected, only longer. On Monday, we were in the doctor's offices from 8:30 am to 6:30 pm, with only a break for lunch. The rest of the trip was just as tiring and difficult. The doctors in Minnesota were being kind and informative. However, that is the most good we can say of the visit. It was excruciatingly painful to hear the details of what will happen as the disease progresses. We found out that not all children have seizures with the disease, but they all do go blind and deaf (if they live that long). I can't believe I am typing those words . . .
The doctors did a few non-invasive tests and determined that Dylan has regressed from a 3 month level for gross motor skills to a 2 month level in the 2 months since we have been trying to find out what is wrong. However, his communication skills have improved just a little and his social skills have plateaued and have not started to regress yet. The varying levels of decline are not that unusual with this disease. The neurologist in Minnesota shared our puzzlement that the original MRI showed no signs of leukodystrophy (Krabbe is a type of leukodystrophy). He feels confident that the diagnosis is correct (given other tests that have confirmed Krabbe), but recommended that Dylan have another MRI to be certain there is nothing else going on. We have scheduled the MRI for the day before Thanksgiving, which is the earliest they could do it..

The worst part of the trip was when we were discussing the timing of the disease. Dylan is so aware and responsive. He loves to watch his brothers and although he crys a lot, he also smiles and laughs easily. We can tell that he doesn't like to see us cry. So, we act ridiculous when we don't feel like it to win those precious laughs. We asked the doctor how long Dylan's interaction will last. We were told probably "weeks to months". The doctors expect that his ability to recognize us and interact at any level will not last past 12-13 months of age. We simply do not have enough negative words in our vocabulary to describe our heartbreak. The thought of Dylan only being interactive through about Christmas just destroys us. The word heartbreak is highly overused. This is a "rip out your guts and twist them with a 'snake bite' then put them back inside while your body still looks the same on the outside".

Amy frequently weeps openly in public. I'll never forget sitting at Applebee's in Minnesota, with tears streaming down my face and hearing the words to a song that said "Don't be afraid to cry". Amy wept openly on the airplane while watching Dylan sleep and reading the guest book printout from our website. The stewardess had stopped to comment on how precious Dylan was and saw her crying and asked what was wrong. Amy told her that Dylan has a "terminal brain disease". It was the first time she had told a stranger. Yet the words have come to mind dozens of times. Each time someone comments on how cute he is, or makes him smile, the words come to to mind - - - "but he's going to die!!!" The sick feeling inside is overwhelming. Amy feels like she always appears to be on the verge of throwing up. And yet that would better express how we feel than just sitting quietly. It just comes to mind that you really never know what is going on in someone's heart when you see them in public. Phil is also having an extremely hard time and is hit frequently with waves of grief.

At first we were struck by how the world kept turning and people continued with their daily lives, when our lives had come crashing down. Now we are struck by the fact the OUR world keeps on turning too. It seems crazy to do some of the stupid things of daily living when our baby is going to die. How can we wash dishes, or take a shower, or work, when Dylan has so little time? We find ourselves not talking at times because what could be important enough to bother with? Then we will find ourselves talking about the stupidest things, just to escape for a bit. The whole experience is surreal, with no end in sight.

We appreciate those of you who have made us laugh or not cry for awhile. Laughter just doesn't come often enough. It is SO draining to cry all the time. Conner was asking Amy "Are you crying?". She said "yes. Does that bother you?". Conner said yes. Amy asked "how does it make you feel?". Conner said "Kind of (long pause) . . .. Nuts!". We were grateful to find something funny. Conner now walks around asking several times each day "Is Dylan going to die?". Jackson is doing better - at least acting out angrily less often. He feels left out because he has to go off to school while Conner gets to go to people's houses to play (when we have doctor's appointments). We know they both need more of us, but there isn't much more to give. Another of our fears is that this could impact them in a negative way for the rest of their lives. We so pray that does not happen.

While we realize that we live in a fallen world and God did not cause this terrible disease, we fully know that He could change it in an instant. Thus far, He has chosen not to. As JOB said, "Thou He slay me, yet will I trust Him".

So please, please continue to pray for us:

Dylan needs a MIRACLE to restore his health.
That our family will find a sense of peace and a new acceptable "normal" within this tragic period.
That we will have financial stability and the wisdom to make decisions that we will live with forever.
For strength, and relief in sleep for us and for Dylan, who is not sleeping well.
Please also pray for Phil's back , as he continues to struggle with the back pain (after 4 surgeries).
For Jackson and Conner to survive this with their child-like faith intact.
That in the coming days/weeks, Dylan will have no pain, will continue to eat well, and will never lose his precious smile.

We love you and thank you for your prayers. Thanks also for visiting Dylan's website at www.caringbridge.org/tn/dylanmay.

Amy & Phil

Sunday, October 31, 2004 11:42 AM CST

Hello everybody -

This has really been a terrible week for us. It seems that the reality of our situation is sinking in a little more. We have been trying so hard to stay "in the moment" to enjoy Dylan as he is now, but it has not worked this week. We have been dreading a trip that we will make this weekend.

We are taking a trip to Minneapolis, Minnesota to see a specialist in Krabbes Disease - Dr. Peters. We are leaving on Sunday and will return Tuesday or Wednesday. The purpose of the trip is to find out what to expect as the disease progresses, how to make Dylan most comfortable throughout the process, and to have an "expert" that we can contact with questions and that will consult with our doctors in Nashville. The trip has been hanging over our heads this week. We are filled with such dread to find out the details of what will happen to our precious angel. The fear has been running rampant with us, especially in the midnight hours.

We have been holding on to the following verses:
May your unfailing love be my COMFORT, according to your promise to your servant. Psalm 119:76
He himself bore our sins in his body on the tree, so that we might die to sins and live for righteousness; by His wounds you have been healed. 1 Peter 2:24

We have a special praise this week. Our Mother's Touch Bible Study group presented Amy with a PRAYER QUILT on Monday. It is the most beautiful thing in the world to us! Each mother wrote a prayer or Bible verse on a little square and it was lovingly quilted together by Michelle Braisted. We want to thank each person who participated, with a special thanks to Carla, Darlene and Michelle for making it happen. The group prayed and laid hands on Dylan on Monday as he was snuggled in the quilt. It was a beautiful, beautiful sight to see. We will treasure this quilt for the rest of our lives.

Our second praise and answer to prayer - we got the "unofficial" word that Dylan's medical bills will not be contested by our insurance as a pre-existing condition. While this won't eliminate the financial burden, it is certainly much better than paying 100%. This is a huge load off our minds, as there is obviously enough to worry about without having to fight another battle. We have also been assigned a case manager, which should help make the insurance process easier for us. Thanks to those who made that happen.

We have also been touched to be contacted by many prayer chains. We were brought to tears by one man's postcard that he was praying for us in the middle of the night, as we slept. The power of these prayers is the only thing that could be giving us the strength to get out of bed each morning.

We have been blessed by many people. Our single solace in this nightmare is that people are being drawn to the love of Christ that is being displayed. This is truly how God intended the Body of Christ to unite. Thank you to everyone who has sent cards, emails, left messages and signed the guestbook at Dylan's website. (http://www.caringbridge.org/tn/dylanmay/) There are also many who have shown such precious servant spirits and we are grateful.

Sleep is not coming easy. Amy sometimes stays awake for 2-3 hours in the night. She wakes often and it is so hard to sleep after crying. Yet it's impossible not to cry when Dylan is lying there sleeping, knowing that these days are numbered unless God intervenes. We try to memorize each part of his face, and his precious baby smell, the way his fingers relax and spread apart in sleep, and the feel of his silky skin. It is excruciating, especially in the loneliness of the night.

Please pray for us, as we go on this trip:

+ Dylan needs a MIRACLE to restore his health.
+ For traveling safety and comfort for Dylan, who will be flying while he is already congested.
+ For strength and comfort from God as we are told how this disease will progress, and the medical procedures Dylan will face.
+ That Dylan can find comfort with someone in addition to us (to help hold him).
+ That Jackson and Conner will find peace from God that surpasses all understanding and that their understanding of the situation will come only as they are ready. Also, that Jackson will not need to act out angrily, but will feel loved and secure.
+ That we will have financial stability.
+ For strength, and relief in sleep for us and for Dylan, who is not sleeping well.
+ Please also pray for Phil's back. Many of you know he has struggled with this over the past years and he is having some trouble now.
+ That in the coming days/weeks, Dylan will have no pain, will continue to eat well, and will never lose his precious smile.

We appreciate and cherish you all.
Phil & Amy

Sunday, October 24, 2004

Hello everyone -

We are back from vacation and have had internet problems since our return, but we're now up and running. Our vacation was wonderfully bittersweet. The weather was perfect and Dylan did quite well. He actually seemed a little less fussy. We are SO SO glad that we went. We spent so much time together and took over 200 digital pictures. We are making a photo album for each of the boys to keep. It was really nice to be there, away from reality for awhile. Nobody knew us, and nobody knew what we were dealing with. It makes us realize that you never know what someone is feeling when you look at them.

Dylan is doing pretty well, although he seems to be a bit weaker. His back has become more rounded, and he doesn't hold his head up well when he's tired. He is still eating well, so we are thankful for that. He is definitely not comfortable with strangers, and less openly friendly. Currently, he only wants 3 people to hold him - Mommy, Daddy and "Miss Betty". All we can say is, THANK GOD FOR MISS BETTY! Someone is holding him nearly every waking hour.

We told the boys that Dylan will go to live with Jesus long before we all do. Conner does not understand at all. Jackson is a very smart little boy, but he has no way to understand death. Jackson's behavior has been rather volatile. He often seems very angry (at home, not at school, thank goodness!). We assume he is just dealing with this the best way he can. But please pray for him.

When we got home, there were over $8,000 of medical EOB's (explanation of benefits) stating that they were doing a routine review for pre-existing conditions. Of course, they pay nothing until that is determined. After reading our policy, we do not see how they could deny coverage (it is a new policy that we put into place on 7/10/04). However, it appears that they could try to do just that, so please pray that everything will be covered by insurance.

Here are some of the ways that God has been working:

+ On the night before our last day of vacation, our camera's memory card messed up. We had taken almost 200 pictures when the camera shut down and said "format memory card to continue". We were absolutely devastated. That was truly one of the lowest points. We just felt that we were dealing with enough huge things, without getting slapped with discouragement at every turn. We prayed about that and everything else and went to bed. The next morning, Phil tried "locking and unlocking" the memory card and all of a sudden, it worked again. We were so thrilled. The moral of that story is for us to try to appreciate things BEFORE they are taken away. We feel that was a direct answer to prayer.

+ Our precious church family held a prayer vigil at our house while we were gone. People surrounded our house and prayed for us last Sunday night. We can't begin to describe how deeply we are touched by this.

+ We have been given a couple copies of the book "Holding On To Hope" by Nancy Guthrie of Nashville Tennessee. We are passing the extra copy through our familly members. She has been through a remarkably similar experience (except they did not pray for miraculous healing). The book is named for her daughter, Hope. Nancy actually lost 2 babies at 6 months old, to a terminal genetic disease. We feel like much of the book was written about our feelings. She dedicated the book to her son "for giving me such a good reason to keep getting up in the morning" and to her husband "Thank you for letting me make our pain so public. She was beautiful, wasn't she?". The book is about Job and his amazing response to pain. We highly recommend the book, if you are going through a horribly painful experience, or trying to help someone who is. This quote is how we feel:
"Those who shed their tears with me show me we are not alone. It often feels like we are carrying this enormous load of sorrow, and when others shed their tears with me, it is as if they are taking a bucketful of sadness and carrying it for me. It is, perhaps, the most meaningful thing anyone can do for me."
Many of you have cried for us and with us, and we thank you for making us feel less alone in that way. Also, thank you for laughing with us when we are able to laugh. It doesn't happen often enough.

+ Thank you so much for the postings on our website. http://www.caringbridge.org/tn/dylanmay. They are very encouraging to us. It is amazing for us to think about how many people are out there praying for Dylan on a regular basis. Thank you, thank you, thank you. As of tonight, there have been over 4,500 hits to the website. My sister counted over 800 posted messages a week or so ago. We will post different pictures sometime this week.

+ People have blessed us with incredible offers of help. They have been so creative in coming up with ways to make life easier for us. Thank you for that.

Dylan is a gift from God to us. In our minds, we know that our children have never been ours to keep forever. In reality, that is hard to accept. In our prayers, we have been trying to give Dylan to God, in the hopes that He will give him back to us.

Please continue to pray for us:

+ Dylan needs a MIRACLE to restore his health.
+ That Dylan can find comfort with someone in addition to us (to help hold him).
+ That we will have answers as the children ask questions.
+ That Jackson and Conner will find peace from God that surpasses all understanding and that their understanding of the situation will come only as they are ready. Also, that Jackson will not need to act out angrily, but will feel loved and secure.
+ That our insurance carrier will cover the medical bills.
+ That we will have financial stability.
+ For strength, and relief in sleep for us and for Dylan, who is not sleeping well.
+ That in the coming days/weeks, Dylan will have no pain, will continue to eat well, and will never lose his precious smile.

Thank you for your continued prayers and support.

Phil & Amy

Monday, October 11, 2004

Hello faithful prayer partners -

This has been the most difficult week of our lives. If we were outside the situation, we could REJOICE at how the Body of Christ has come together for our little Dylan. We are aware of how God is working and we are so encouraged by the support, but find rejoicing a little beyond our reach at this moment. However, we will continue to try to find the good throughout.

We want to thank our church family. The entire church prayed for Dylan on Sunday, as Pastor Rick anointed him with oil, in accordance with James 5:14. Our precious Sunday School class was there on stage with us, for moral support. Thank you for that wonderful outpouring of your love to us, and for a perfect witness to how God planned for the Body of Christ to work. Thank you also to everyone who has called, and sent cards and emails, and offered help in many, many ways. So many of you have helped in tangible, practical, personal ways and we are so grateful. You know who you are and we appreciate it more than words can say. Our hearts are so humbled by the outpouring of love for us.

(if you would like to see our pastor's prayer, you can access our church website at www.thepeopleschurch.org.
Then, click on the picture of the eye on the left side of the page. Then, under ‘video’, click 10-10-04. If you fast-forward to about 1hour, 4 minutes, this is where the pastor starts talking about Dylan)

We have decided to take a family trip, which we had planned months ago, but had assumed we would not take in the current situation. However, we want our boys to build memories together. We have never taken a vacation as a family of five, and unless God intervenes, this will be the only one. The timing is good, because Dylan is still well enough to travel. We will be gone from Tues 10/12 - Wed 10/20. Please pray for us. It is our plan at the end of the trip to tell Jackson and Conner that their little brother will be going to see Jesus much sooner than they are. We do not yet have the words, and our hearts break even further at the thought. It will be the hardest thing we've ever had to do. We need God's wisdom to give them the knowledge they need (before they hear or read it somewhere) and the comfort to believe that everything will be ok (eventually).

In praise to God - we even had a class of Kindergarteners in Franklin public school praying for Dylan. Surely God will answer the prayers of a group of 5 year olds! Also, well over 1,000 people prayed during both services at church on Sunday. So we are feeling very blessed to be prayed over.

Last week we had 8 appointments related to Dylan. Today we saw Dr. Phillips at the genetics clinic at Vanderbilt. The good news is that Jackson and Conner do not have Krabbe Disease. The bad news is that they are both carriers. The general population has a 1 in 100,000 chance of having an infected child. Our boys will have a 1 in 1,200 chance of having a child infected with Krabbe Disease (our grandchildren).

The website with Dylan's updates is at www.caringbridge.org/tn/dylanmay. We have added pictures. Thank you so much for everyone who has signed the guestbook. We have tearfully read your encouraging words and appreciate it very much. We also believe that those words are a true witness to God.

We feel it is important to capture and enjoy every moment with Dylan. If you come to our house, just plan to see it be a total wreck. We do not care about anything except spending time with our children. Unless God intervenes, we have to pack a lifetime of love into a very short time for Dylan.

Please continue to pray for us:

Dylan needs a MIRACLE to restore his health.
For safety, peace and joy for the children in this trip.
That we will have the strength and wisdom to tell Jackson & Conner what no child should ever have to hear. Also, that we will have answers for their questions.
That Jackson and Conner will find peace from God that surpasses all understanding and comfort in our everlasting love.
For strength, and relief in sleep for us.
That in the coming days/weeks, Dylan will have no pain, will continue to eat well, and will never lose his precious smile.

On our knees in supplication to the King of Kings -
Amy & Phil

October 7, 2004

Hello loved ones -

We are writing to beg your agreement with us in prayer. We are asking for Dylan's complete and MIRACULOUS healing. We have reviewed the documents re: Krabbes Disease from the doctors. The progression is completely devastating. To quote - "Stage III, sometimes reached within a few weeks or months, is the "burnt out" stage. The infant is blind and decerebrate with no voluntary movement. The infant has no contact with his surroundings."

Last week, before the diagnosis, I confessed my fear to my sister, Laura. I told her that I was in despair, as my imagination and the internet had taken over. She gave me the best advice I have received yet. She said, "Get off the internet and get out your Bible. If you can only find one sentence to comfort you, keep repeating it until you BELIEVE it. "

She then sent me some scripture on healing. Please see the below. I have picked out my verse, as follows:

"Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective." James 5:14-16

The elders of the church have been here. Pastor Rick, Dick Wells, and Alan Pace came and prayed with us on Tuesday. Our Sunday School class came later that night and prayed with and for us all.

"My" verse from James tells us to "pray for each other so that you may be healed." I know that there are many, many people praying across the country. It would be very encouraging for us to see the body of believers in agreement in prayer for our precious child and it might encourage others to continue their faithfulness in prayer. If you are comfortable doing so, we would like to ask that if you are praying for us regularly, that you please sign onto the our website that shows Dylan's progress, photos (coming in next few days), etc. There is a guest book there that you simply sign in to let us know you are out there. The website is www.caringbridge.org/tn/dylanmay.

Thank you all, from the bottom of our broken hearts, for all of your cards, emails, calls, meals, and acts of service. We are truly humbled by your love and support.

In constant prayer and supplication to the God of all Creation -
Amy & Phil

October 4, 2004 - Diagnosis

Hello loved ones -

We are writing with completely broken hearts. We are not sure how to get through this email, let alone farther than that.

Today we saw the geneticist (Dr. Phillips) at Vanderbilt with Dylan. We spoke to Dr. Burcher in that office last week. She said that several more of the tests had come back normal, but the ones that weren't back would take 3 more weeks. We were completely unprepared for the news that met us today. One of the tests had come back with the diagnosis for Dylan. He has Krabbe (pronounced Crab-A) Disease. This is an excerpt from the document were were given:

"Krabbe disease is characterized by infantile onset with progressive neurologic deterioration and death usually before two years of age. Individuals with the infantile form appear to be normal for the first few months of life but develop extreme irritability, spasticity, and developmental delay before six months of age. Regression in psychomotor development results in feeding difficulties and marked hypertonicity, eventually leading to a decerebrate state with no voluntary movement. Death from infection can occur at any age.
Krabbe disease is inherited in an autosomal recessive manner. In each pregnancy, couples in which both parents are carriers have a 25isk of having an affected child, a 50isk of having a healthy child who is a carrier, and a 25isk of having a healthy child who is not a carrier. A carrier frequency of one in 150 may be used in the general population. "

Tomorrow we go to have blood drawn on the whole family. We (and Dr. Phillips) want the test repeated on Dylan. We also need to determine that Jackson and Conner are not affected (it could be "late-onset form", but the doctor believes we would have already seen signs). The boys will need to know if they are carriers, as this could affect their children if they marry a carrier.

The doctor gave us no hope. He is putting us in touch with the 2 leading researchers on the disease. There is an experimental bone marrow transplant that they are testing, but one of the researchers said that it is too late, since the symptoms have already on-set. They are apparently working with children that were diagnosed pre-birth (due to knowledge that siblings had the disease). Dr. Phillips also advised us that there are major complications with bone marrow transplants. He also cautioned us that the things we would find on the internet could lead to false hope. He prefers to put us in direct contact with the leading researchers.

Dylan is such a beautiful, sweet baby. Our hearts break every time we look at him. He just smiles back at us as we sob. We are railing at the injustice of it all. We have no idea how to get through this. Driving home today, it was bizarre to see people carry on with their day and their lives, when our lives had just come crashing down.

So far, we have told Jackson and Conner only that we have found out that Dylan is very sick, and he will never be strong like they are and able to sit up and walk.

Please pray for us:

Dylan needs a complete and total MIRACLE. I know our God is an awesome God and He can do whatever He wants. He is the Creator of heaven and earth, and all of us and Dylan. We are just begging for His answer to be YES, I WILL.
That Jackson and Conner will be completely unaffected and will not be carriers of the disease.
That Jackson and Conner will not be afraid, or feel guilty, or left out.
That we will have the strength to bear what no parent should ever have to bear.
That in the coming days/weeks, Dylan will not be in pain, will not realize what is happening to him and be affected as little as possible by all of the potential directions this horrible disease can take.

We thank all of you for your prayers, your well wishes and your expressions of concern. If you write or call/leave a message, please know we appreciate you, but may not be able to talk at the moment. We are trying to stay strong for the other boys, but it is really impossible right now.

On our knees in grief,

Phil & Amy

September 26, 2004

Hello dear friends and family -

We are writing with no real news, but just to let you know what is happening.

Last Monday we met with the geneticist at Vanderbilt, as mentioned in our email last week. He suggested an EEG (to rule out seizures, which we did not believe he was having) and referred us to an ophthalmologist.

Dylan had an EEG on Wednesday. I'm really glad we did not know what that would entail. He was supposed to be really really sleepy because he has to fall asleep for the test. The nurse told us not to let him sleep more than about 4 hours during the night. Can you imagine? We put him to bed a little late, and got him up at 5:00. Our appointment was at 8:30. We waited 40 minutes, most of which Dylan was screaming. They put a cap on his head with a chin strap and a 2 foot long tail. The cap had holes in it and they poked his head with a wooden stick, then squirted a gel in on top of it. Now he's supposed to fall asleep like that! Bless his little heart, he did fall asleep. However, the technician kept poking and prodding on him (about 5 times) and finally woke him up. There was nothing we could do but leave and come back later. So we waited around Nashville and brought him back at time for his next nap. They finally got the test completed. We were all exhausted and got home about 2:00, after having left home at 7:30.

On Friday, Dylan saw an ophthalmologist at Vanderbilt (Dr. Donahue). He was very good. He dilated Dylan's eyes so he could see the optic nerve. Apparently, the optic nerve is an indicator of a lot of diseases. Dr. Donahue also reviewed Dylan's MRI (which is on-line at Vanderbilt) because his optic nerve was mentioned in the MRI report. He did not see any indication of disease at the optic nerve, but there was a "slight fullness to the anterior aspect of the optic chiasm of uncertain significance", so he wants to see us again in 4 months. The fact that he did not see anything at the optic nerve is great news, because the diseases that would indicate are very serious.

On Friday, we talked to the genetics lab to check on the status of Dylan's blood work. 3 of the 12 tests had come back and were normal. We will call a couple times this week to check on the status. Our appointment with the geneticist is a week from tomorrow (Monday 10/4). At that time, they hope to have all the blood results back in. We just hope they all make it in time.

We have an appointment this Friday (10/1) with TEIS to get the physical therapy set up.

Please, please continue to pray for us. The "not knowing" is just excruciating. We look at him and he just smiles the most precious smile. Yet his body will not cooperate. The differences between him and other children his age are becoming devastatingly apparent. He can't seem to hold onto a toy anymore. His mind is active, but most of the time his arms and legs are very still. Dylan is still quite fussy. We don't really know if he is in pain, or just wants to be held. He also just cut his 5th tooth and I'm sure the 6th one is on the way.

Please continue to pray:
+ That Dylan be completely healed, and restored developmentally
+ That we would have peace and not fear or depression during the wait for the tests, and wisdom to know which direction to take next.
+ For our pediatrician - Dr. Ray Meneely, that he would have the wisdom to advise us, the persistence to get us in to the specialists we need to see, and the compassion to respond quickly to our needs.
+ That the test results come back quickly, and that the results be something treatable.
+ For Dylan, that he would respond well to physical therapy, that he would have fun and not find it torturous.
+ For Jackson & Conner, that they would have peace in their little hearts, and feel our love, not our fear.

Thank you, from the bottom of our hearts.

Phil & Amy

September 20, 2004

Hello dear friends -
Thank you for all of your many prayers.

We took Dylan today for genetic testing at Vanderbilt. We had hoped to get in last week, but the wheels turn slowly . . . We saw Dr. Phillips, who is the head of the department, so we felt really good about that. We were not expecting an answer today, which was good, because we certainly didn't get one. Dr. Phillips ordered a bunch of tests (see below). However, he said that there are no physical signs (such as enlarged liver or spleen, large or small head, etc) that point him in a particular direction, so we are getting a battery of tests. We will have to wait 2 weeks for the results, which is just excruciating for us. We will see Dr. Phillips again on Monday, 10/4.

Here are the tests to be done, some of which are done at Vanderbilt, some at Baylor Univ, some at Johns Hopkins and some in Alabama.
1) Lysosomal storage diseases
2) thyroid (TSH & FT4)
3) very long chain fatty acids
4) quantitative plasma amino acids
5) ammonia blood
6) basic metabolic profile
7) lactic acid
8) pyruvate
9) acylcarnitine profile
10) expanded newborn screening
11) urine organic acids screen
12) muco & oligo saccharide screen

Our poor little angel had 8 vials of blood taken from his little arm. Thankfully, it was all done with one needle prick, but it seemed to take forever. We are also being referred to a pediatric ophthalmologist at Vanderbilt because the optic nerve can indicate certain disease processes. In addition, we will get an EEG, hopefully at Healthsouth because it is quicker than Vanderbilt. We are also going to get him started on physical therapy, to try to keep him from losing strength while being diagnosed. I know he is going to really hate that, because he does not like to be made to lay on his stomach and try to sit up, etc.

We are very concerned that Dylan is continuing to weaken and lose skills that he had a week or two ago. We asked the doctor for his view on whether he will be able find the problem and whether Dylan will be ok. He can only tell us that he is very concerned and will do the best he can to find the problem.

All that to say, we are deep in the middle of a medical nightmare. I feel like I'm sending my diary out over the internet for all to read. But here is the cry of my heart - -

"Turn to me and be gracious to me,
for I am lonely and afflicted.
The troubles of my heart have multiplied;
free me from my anguish.
Look upon my affliction and my distress
and take away all my sins:.
Psalms 25:16-18

This verse gives me comfort, because I know you all are praying:
"Therefore confess your sins to each other and PRAY FOR EACH OTHER SO THAT YOU MAY BE HEALED. The prayer of a righteous man is powerful and EFFECTIVE." James 5:16

So please do continue praying for us. Here are our requests:
+ That Dylan be completely healed, and restored developmentally
+ That we would have peace and not fear or depression during the wait for the tests, and wisdom to know which direction to take next.
+ For our pediatrician - Dr. Ray Meneely, that he would have the wisdom to advise us, the persistence to get us in to the specialists we need to see, and the compassion to respond quickly to our needs.
+ That the test results come back quickly, and that the results be something treatable.
+ For Dylan, that he would respond well to physical therapy, that he would have fun and not find it torturous.
+ For Jackson & Conner, that they would have peace in their little hearts, and feel our love, not our fear.

Humbly thankful for your prayers,

Amy & Phil

September 16, 2004

Hello dear friends -

We are home from having the MRI at Vanderbilt this afternoon. It was an excruciating experience, but we have much to be thankful for. Dylan could not eat at all today until after the procedure, which started at 3:40. He was understandably fussy. He had to go under anesthesia, which was so pitiful to see. We were not able to be with him during the actual MRI, which took about 40 minutes.

We were late getting the MRI - it started at 3:40 pm, so we gave up hope that we would hear back tonight from the neurologist. But PRAISE GOD, he called while we were in the car at 5:45 - ONLY 2 HOURS AFTER THE PROCEDURE HAD STARTED!!! He had seen the test and from his review, he said IT IS NOT IN THE BRAIN!! We are so incredibly thankful for this answer to prayer!! The doctor was trying not to scare us, but he was afraid that it was a "very bad disease" in the brain. So now we have to continue on the quest to find out what is actually wrong, but we do so with lifted spirits. There could be no good answer to finding something on a brain MRI (i.e., either brain surgery, or an inoperable problem), so we just feel thankful to be able to move on. The next step is to do genetic testing, to see if there is a metabolic or hormonal problem. The neurologist hoped that we would be able to start the genetic testing tomorrow. The doctor tried to subdue our enthusiasm by telling us that he still cannot state that the problem is treatable.

Please continue to keep us in your prayers, as little Dylan is no better from this answer, but at least we can move on from brain issues. We thank you from the bottom of our hearts for your prayers, as we feel that there have certainly been some answered ones today ( 1- we did hear back from the doctor today and did not have to spend another torturous night wondering about the test results. 2-The brain is not the problem!! 3 - Poor little Dylan got some relief from his constipation. We praise God in the small things too, because Dylan is certain to be more comfortable now. 4-We also praise God for the tremendous outpouring of love we have received, from both friends and people we don't even know. )

Please continue to pray :
+ that little Dylan will be completely healed and get totally caught up in his development
+ that the healthcare providers will have the wisdom and knowledge necessary to diagnose the problem AS SOON AS POSSIBLE and that the problem will be treatable.
+ that we will have wisdom to know how and with whom to proceed
+ Strength and peace for us, as we learn the answer
+ that God would receive the glory in this situation, as there are many eyes upon it.

Again, thank you for your continued prayers. We will keep you posted.

Phil and Amy

September 14, 2004 (evening)

Hello everybody -

Thank you for your faithfulness in prayer. We still REALLY REALLY need it.

We saw the pediatric neurologist at Vanderbilt today. He worked us in and we had a relatively short wait. He was very concerned by his physical exam of Dylan (based on his reflexes, muscle tone, our responses to questions, etc). He said there is something "active" going on in the brain, based on the regression, and felt we needed an MRI as soon as possible. He did not speculate, as the range is too broad. However, he did state "some conditions are treatable and others are not". The next available regularly scheduled appointment for an MRI is November, but ours is tomorrow. We are thankful for that, but it scares us half to death.

At this point, we are sure that something is going on with our precious angel. Please pray:

+ that the condition will be treatable, and totally healed, with no harmful effects.
+ that Dylan will be safe and comfortable through the MRI - he has to be under anesthesia because there is no way to keep an infant still for 30 minutes. Also, he cannot eat ALL DAY until after the MRI at 3:00 and anesthesia wears off.
+ that our hearts will be calmed. I have such a spirit of fear, that I have never before known.
+ strength to handle whatever may come

We may not know the results tomorrow. The doctor said he would probably see the MRI about 5pm and call us the next morning. I asked if he could call us at home, but he did not commit either way.

Humbly asking for your continued prayers,

Phil and Amy

September 14, 2004

The following is an update after our Sunday school class at church spent time praying with us, laying hands on Dylan and lifting us up to God.

Hello everybody -

We want to thank you from the bottom of our hearts for the love you guys expressed to us on Sunday. I truly feel that was a work of God. We feel so blessed to have such an incredible support network in our Sunday School class. Thank you for your continued prayers. As I mentioned, I woke up in the night Friday night, wanting Claude to pray and our class to lay hands on Dylan and it happened. So thank you for that.

I know we worship a loving and merciful God. There are prayers going up for Dylan across the country and I know that God is faithful to his promises (where 2 or 3 gather together . . . ). This is the only comfort we can find right now, as our hearts continue to break.

We saw our pediatrician yesterday. We didn't expect to find out anything from him, as we knew his next step was to refer us to a neurologist. However, it is important to have him in the loop and working for us to smooth the way to the doctors we need to see.

Dylan is incredibly constipated, which is probably a symptom of something larger going on. But if you guys could pray for that, I feel he would be more comfortable in the short-term.

We see the neurologist this afternoon. They are just working us in, so we'll probably be there most of the day. I would consider it a victory if we could also get an MRI done TODAY (as that is the next step), so please also pray for that.

Please continue to pray for:

+ complete and total healing for Dylan
+ comfort for Dylan, as he is very fussy. Also that he will not be uncomfortable or afraid when he has the MRI. (I cry just thinking about it).
+ That God's glory would be known through this situation, as many many people are watching it
+ wisdom for the doctors and healthcare providers
+ that we would receive answers from the doctors, and that the condition be treatable
+ for strength for us, and relief in sleep
+ for Jackson and Conner (that they not feel our stress, but only love)

Thanks for everything.

Amy

September 8, 2004

Hello dear friends -

I am writing this because I cannot bear to talk about it. We need your prayers for Dylan, our precious baby. He is 7 3/4 months old.

We do not know what is going on. Here is the history and our torturous past 10 days -

Looking back, Dylan's development appeared to be completely normal until after 6 months (i.e., rolling over, grabbing toes, playing, etc). He did not sit up on time (~6.5 months). We also realized about that time that he HATED to lay on his stomach. We would try him on his stomach and he would just cry and cry. At this point, we realized that he had stopped rolling over. He never did it a whole lot, so it wasn't a huge change. But now when we lay him on his stomach, he gets so upset that he won't push up or raise his head up. At 7 months, I called the doctor. He said he was not concerned yet, but if he's not sitting up by 8 months to bring him in. We tried more and more to lay him on his stomach and help him sit up, but saw no improvement. In fact, it seemed to get worse because he did not like it. So we took him to the doctor at 7.5 months instead of 8.

I was hoping the doctor would say that 1) I was paranoid 2) he's spoiled rotten and 3) give it time. Instead, he said "I share your concern. I think you should contact TEIS (TN Early Intervention Service), have him evaluated, and get some physical therapy". So last week we did just that.

The Developmental Evaluation was incredibly painful for us to hear. They said that his gross motor skills are that of a 3 month old (because he won't roll over anymore, or raise up on his arms) and fine motor skills develop after the gross motor skills. We felt like the analysis was somewhat incorrect, because Dylan will raise up if he's laying on our chest, but not on the floor. So we felt he had the strength, if he chose to do it. The evaluation person felt that this could be corrected with physical therapy. So we felt good that it was "fixable" and would just require physical therapy. That was last week.

However, yesterday he was evaluated specifically for gross motor skills. This physical therapist feels that there is more going on and we should see our doctor again. In the mean time, we are noticing and panicking at every little thing. We are now convinced that he has not just slowed in his development, but regressed in his development. (For example, he now has trouble getting his thumb into his mouth, and he has been a big-time thumb sucker.)

His issues seem to have all happened in the last month or so. After the evaluation today, we wanted to go straight to see our doctor, but he is out of town until next week. We are planning to see a go ahead and see neurologist to try to find out what is going on with our precious baby.

Please please please, pray for Dylan. Pray for
+ HEALING for Dylan, complete and total, Miraculous, if necessary.
+ WISDOM for us, that we will take the appropriate steps.
+ WISDOM for the healthcare providers, that we will find out the TRUTH.
+ STRENGTH for us, to be able to bear it.
+ also for Jackson & Conner, because we're sure they feel our stress and fear.

Like I said, I haven't called because I can't bear to talk about it. I'm sorry about that.

We love you all. Please remember us in your prayers.

Amy & Phil

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