Just so you know, I NEVER want us to have a TV in our bedroom

This was something Tim said to me years ago, before we were married and moved in together. He could have said it to protect himself, but as a friend and husband he always wanted what was best for me. He knew that having a television on during or before you go to bed does not give you a restful night. He didn’t want that for us, ever.

I have been falling asleep with the TV on a lot lately. Haha- Whatwhat Tim? IN YO FACE!– I have this small TV that I move from room to room when I am doing something, like making dinner or cleaning a certain room. It has ended up in our room and I have been watching some TV shows on DVD to go to sleep. Surprisingly, Tim has not said to much against it or even about it. Sometimes, Tim falls asleep on the couch or in Grove’s room (he has his desk for school in there) and that is just Tim. We aren’t fighting or anything. If you know Tim or his twin, Stephen, they can seriously fall asleep anywhere. Because of this, some nights I go to bed alone and put the TV on for… comfort?… I guess. Well tonight, Tim came back from a long day trip to State College where he hung out with some Physicists *COUGH*NERD*COUGH COUGH* IloveyouTim…. He was really tired. He went right into bed when he came home. By the time I got into bed I decided that I will try to fall asleep without the TV tonight and just snuggle with Tim.

Now I know why I recently would watch TV to go to bed. Being snuggled up close to Tim and trying to turn my mind off is impossible. Thinking about how much we take our loved ones for granted. There are so many people who do not get to hold the one they love to go to sleep.  They go to bed lonely and feeling empty. When the day gets quiet and I am trying to not think of much, that is when my thoughts spiral down in despair and negativity. My thoughts just snowball and I become more and more upset. Yes, with the TV being on I may not get a good night sleep, but with recent (as in the past 6 months) events in our lives and upsetting news, I think I may find sounder sleep with the TV on instead of my brain.

Here is my “Don’t take people for granted” scpheal (How do you EVEN spell that?!!) – Be honest with people. Especially about your feelings towards them. You don’t know what will happen an hour from now. You may not have the chance to ever say it again. I feel like I hear that a lot. Usually people dealing with grief from losing a loved one, offers that advice to whoever will listen. But when you experience loss, you will find yourself giving out the same advice, if not, something similar.  I don’t know how long I will have the joy of falling asleep next to the man of my dreams, but I am trying to soak in every moment of it. I catch myself having that mindset throughout the little moments of our days together. I just tell myself to soak it up, like a sponge and I pray for a photographic memory, not that that will EVEN come close to having Tim right next to me for the rest of my life, but it can get me as close as possible to that dream.

Don’t worry too much about me and my state of mind. It is just late at night. God provides the strength I need to have faith in him to carry all of my loved ones through the night and faith to keep looking to him no matter what happens. We are in his hands. We are safe. I can put my trust in him and I find my rest in him.

And this song came to my heart after re-reading that. :
You’re calling me to lay aside the worries of my day
To quiet down my busy mind and find a hiding place
Worthy, You are worthy

I open up my heart and let my spirit worship Yours
I open up my mouth and let a song of praise come forth
Worthy, You are worthy

Of a childlike faith and of my honest praise
And of my unashamed love

You are too “ICE” to Donate to us

As I scroll through our donation page, I am overwhelmed to tears with the amount of support and prayers we are getting. Some friends that we have met years ago but have lost touch, strangers, acquaintances, close family friends, and friends of friends are all part of the outpouring of sincere hopefulness to help in some way. I can assure you that you are helping us in many ways! But, I feel so unfortunate that whatever the amount of money we receive, it will not save Tim’s life. If the cure was based on the people reaching out to us, helping, donating, praying and thinking of us, he would be cured ten times over! They need to find a cure. It is that simple, Tim is strong enough to fight it. We are pleading for prayers in all areas of research for the horrible disease. We pray that the money is used most wisely and each dollar will be stretched to its furthest limit.

I have read many different views on the challenge and I feel sorry for those who think it is a waste of time or not necessary to dump ice on your head. Guess what? It is a nation wide sensation. There has been over $53.3 MILLION raised through this. If someone simply said, “donate to this charity” it wouldn’t be a viral outpouring and support. Because it is silly and ridiculous, more people want to be involved. Today, everyone knows or at least has heard of ALS and how it affects the victims of it. That is the first and foremost goal of this crazy challenge- the awareness. The second is to raise funds to aide in the research to find a cure. I can’t even begin to fathom what a cure would look like, but I know that God has blessed many skilled and talented people and it could very well be right around the corner. God is still in control, among our chaos.

As for us- This is the last few days before Tim starts school. The challenge for him (and us, I guess) is that this semester is the first one where he is diagnosed with ALS. We already met with the Lock Haven’s disability department and set up several different resources that will help Tim to get through the semester easier. From what it sounds like, Tim will be the only one in a chair. Tim will have a motorized chair. Fun fact- the speeds on this puppy are “Slow” “Medium” “Fast” and “LUDICROUS”. Tim had that put in. But still it makes me laugh. We have gotten the doctors to sign the papers needed to get the disability benefits. He was diagnosed towards the end of the semester (mid- April) so we were used to having me drive him in between classes and he was using a cane. However, looking at how we did things about 5 months ago is pretty sad how quickly it progressed. 

We are spending the time before he heads back to hitting the books with his family in Meadville area. Tim and his identical twin, Stephen’s birthday was yesterday. Tim is now 27 years old.  

My best friend, Angela challenged us to the ice bucket challenge in order to help stand with those who are suffering. She had the smart challenge of telling all of those who she challenged “Please don’t dump ice on yourself until you know what the cause is for. Research ALS and know what you are supporting.” We completed the challenge, but we were already pretty wet since we were caught in the rain. 

I know if posts are too long, people get bored so I will go on to type up another one with some details about Tim’s surgery and recovery. Thanks for reading- if you got this far. 

To Catch You Up…

Well, a lot has been happening in this past month and a half. We are now pretty much settled into our new apartment. I am much more happier here and it is more room which we desperately needed, plus a yard for Grovie!! Tim will be starting school August 25th. His 27th birthday is August 22 ;).

We hired Sarah to aide in everything that I, Robyn, am trying to juggle. Sarah has a nursing background. She helps me with the cleaning, Grove and caring for Tim. She has been a godsend and is one of the hardest and most efficient workers I know. We are truly blessed to have her around to help us. Side note* She was in desperate need for a job as her husband was diagnosed 1.5 years ago with a terminal brain tumor. He has been going to chemo and treatments of all kinds. She has two kids and they also adopted their nephew. She has her hands full and is such a strong person. I am happy to know her and call her a friend. As you read this, stop and say a prayer for this family, especially Sarah. She works 5 hours a day, 5 days a week and is always on call if/when we need her. She basically packed up our old place and unpacked us in our new place. I would have been so overwhelmed without her. She says working for and with us is her way to give back to all who have given to her. Our situations are similar, only Tim is declining much faster. Her husband’s name is Tim too. She says it is strange sometimes because she feels as if she is on the outside of her situation and looking in at what she is dealing with.  This is AMAZING Sarah!!!

The apartment is actually the first floor of a house over looking the river. The only steps Tim needs to deal with are to get in and out of the house. There are steps to the basement, but he has never even attempted, nor will he, to go down there. We are getting a BIG ugly ramp put in the one entrance. Tim’s motorized chair has arrived several weeks ago, but it is sitting in the VFW office in Lock Haven because our vehicle for transporting it is still in the works and the ramp needs to be put in so we can bring it in our house.
Tim has declined in his walking and we have stored away the canes. He is now only able to use the Canadian crutches (arm crutches), walker or wheel chair. He no longer feels stable with simply a cane.
He also received his leg braces! We have waited for months for these. These are inserts that slide in his shoes that keep his feet at an angle to allow for easy lifting of his toes. He has a toe drop in both toes, which means he is unable to pick up his toes. We have resulted to helping him by lifting each foot for him as he climbs stairs or curbs.
Grove has been such a sweet kid. He helps Tim take his braces off at the end of the day and he patiently waits as Tim climbs stairs. My mom said, through tears, that she can tell that even though Grove does not fully understand, he seems to comprehend that there is something wrong. He will just walk over and lay his head on Tim. My heart melts so much when I see them together.
Back to Tim. So, we are waiting on several things, the ramp for our door into our home, accessibility to his power chair, our new vehicle (which will then need to be sent away to get the lift for his chair), several more assistance devices and some school aide items.

So far, he has received scoop plates which allow him to press food against the side of the dish to help scoop it into utensils better. They also have little spikes in the middle to spear the food onto so it won’t slide around the plate. He got a bigger key turner, some more kitchen utensils, a seat assist (It gives him a boost out of a chair), a percussion vest- not sure of the right name but it shakes his chest to help break up stuff in his lungs (like a cough would do-eventually ALS patients’ muscles cannot affect the phlegm in the lungs) and keep him breathing clearly,… There are a bunch more of things, but you get the idea. We are always so amazed at the devices that are out there these days. However, to be completely honest, those appointments, where we look at assistance tools are the hardest for me. Flipping through a book that is about the size of a JcPenny catalog that has pages and pages of assistance devices. There are the typical walkers, canes, crutches, but also sitting assistance, wheelchair contraptions to help lift your arms up to help you eat. ANNND it is the latter kind of things that cause me to fight the tears as I drive us home. It is hard for me to comprehend that Tim will be in need of some of these things that will claim his independence. It really sucks.

We had an appointment in Altoona to test out our two options of computer aides for Tim. EYEGAZE is a computer that will be able to tell where your eyes are looking and you can click by dwelling on one thing or blinking. It is also a touch screen. There are two brands and we are in favor of the tobii system (look it up. It is so neat!). The sooner he gets the system, the better. While his voice is strong and clear he can record his voice for the computer voice that will eventually talk for him. The speech therapist said she can tell his voice is getting softer.
He is also in the process of getting the “live scribe” which is a pen that will record when he writes. It will record up to 6 hours of audio. So basically he can be drawing a graph in his notebook in class and the pen will pick up the lecture that is being said. We haven’t tested the live scribe yet, but that is how it was described to us.

The biggest upcoming event is Tim having surgery to get a feeding tube put in. August 20th, Wednesday Tim will be having the procedure at the Pittsburgh VA. Honestly? I hate this. I hate that we are to this step. This is just another reminder that this is INDEED ALS and not some other random non-terminal mixture of illnesses. Which is what we told our “second opinion doctor” that we were looking to find from them :P. It was just a crazy weird case of carpal tunnel. Anyway, I know it is what we need to do. Most of the procedures and aides for ALS patients are not preventative but more like planning ahead. Which means IT WILL eventually happen. Which stings the most. Knowing that it is coming and it will be something we have to face and soon. The recovery from the procedure is about a week and Tim starts school the 25th. He won’t have the assistance devices for school for the beginning of school and when he writes anything it takes a long time and is not the most legible. So we just need prayer that he doesn’t start the semester and end up behind right away.

I’ll try and keep this up to date. I had to type all of this quickly because the boys are sleeping and I am tired too. Maybe I will be able to give more details sometime soon. Thank you for your prayers and thoughts. Everyone wants to help, I honestly don’t know what to tell you. The money helps, but it doesn’t give us Tim’s health. We are just praying for a cure. Praying…. and praying… and pleading and praying…

Introducing Assitance In Our Every Day

We are SO grateful for all of the people who have been reaching out to us. We have been encouraged, inspired, supported and prayed for by so many. The support is hard to comprehend. Thank you!
– The other day, Tim pointed out to me the ways that God is truly providing for us. Ever since our move from San Antonio, TX to our home state of PA (August 2012) we have really struggled, in many ways, but the biggest one was financially. Even though this is a VERY terrible situation, God has proven time and time again that we are in the palm of His hand. Because of the outreach that our families have invested into finding us help, our bills have been paid for, and we have much more to look forward to, which we didn’t have before.

The VA has been giving us support and aide from every direction. Many people have told us to utilize the VA every chance we get because they have a lot to offer. This is so true, and I would hate to face this trial without having them to fall back on.

Tim has been receiving many tools to use to aid him in getting through each day.
We started with a cane (*ahem * walking stick) that was gifted to him from a friend from our local coffee shop. As we attended different appointments and met with more and more people, they recognized that the cane was a bit too short for him. Since then we got one from the VA that is molded to fit his hand (ergonomic grip), plus two more (one has the quad foot) received as gifts.
At the ALS clinic in Pittsburgh, Tim came home with an extra long shoe horn, button hook/zipper pull, shower chair, and  hand-molded cane. He definitely struggles with getting dressed in the morning so the first two are self explanatory. The shower chair is QUITE a pain in our tiny bathroom. It is a bench that two of the legs are out of the tub, while two are in. We had to understand how to position and maneuver the shower curtain to not make a giant mess. GAH!

SPECIFIC to Tim’s case of ALS:: Tim has a severe foot drop in his right foot and a slight one in his left foot. A foot drop is simply his incapability to lift his toes off of the ground with his ankle. This has been the cause of many falls and accidents since his diagnosis. They have fitted him for a foot brace on his right foot and an insert for his shoe. This looks like a flat outline of the foot which fits into the shoe. The brace has a metal bar going up the back of his calf and velcros around his leg, just under his knee. Maybe I will get a picture up of it soon. After this one was ordered and fitted, they decided to fit the left foot too. It took a while to get either of them. The big pause button with this whole “assistance” device is that Tim cannot use them in his current shoes. He needed a new pair. But he couldn’t purchase new shoes until both of the braces were received and fitted. They would also need to make sure the right kind of shoe was being used. We had to order them through the VA- fancy and hip Velcro fasteners!- which we have yet to see. We have the right foot’s brace, but are unable to use it. I feel that when these are finally in the shoe and on his feet, there will be less falls.

We had a separate appointment  with the OT (Occupational Therapy) through the VA who explained the Dolomite walker to Tim, which we then took home with us. This is a walker that has a small seat for when he needs to take a break from walking (and a fun basket to carry things). It also has breaks and locks in place. Pretty fancy. Our only complaint is that it doesn’t really get smaller when not in use. However, Tim has been utilizing this much more recently.
At this same visit, we received arm crutches. These are a bit trickier and harder to get used to. We only break these out when we feel they are definitely needed.
We got a raised toilet seat and handlebars so he can get up easier from the toilet. We have not set these up yet since our apartment is tiny and the bathroom doesn’t have enough room for them. We are hoping and planning on moving to a bigger place (*crossing fingers* a house) soon, where we will finally put some of these items to use.
We also ordered several other things. They had a thick book-like magazine for us to look through. If anything seemed like it would help, we simply said so, and they put in an order to have it mailed to us. We ordered 4 “16 in handle bars and 2 “18 in handle bars- Tim has a hard time getting up steps and through doors. Our apartment has two steps to get in through the front door and two more steps up into both of the bedrooms. One of them is to be used as a grab-bar to get into the tub. Fork and spoon arm wraps- These are pretty interesting and not quite what I expected. They are a simple fork and spoon attached to a big Styrofoam tubing with a wire that he can wrap around his forearm to hold his utensils while he eats. THAT will take some getting used to. Knife rocker– this fits around his fingers so he can make a fist and rock the knife back and forth to cut through food. Light, key and door knob extenders- These simply make those small and hard to grasp items a bit more accessible to Tim. Back brace/support– We actually have not yet received this, but we are hoping that it will help Tim out of seated positions, since this is a big struggle. At the ALS clinic in Bloomsburg, they also told us about a cushion that will give him a boost when he goes to get up. We are eager to hear more about this.

Most recently, Tim was consulted, fitted for and test drove a motorized chair. In the past two weeks, all of this has gone down… in the Altoona VA. He chose the color blue. It has a joystick for moving around. They said it can eventually be controlled by head tilting and motions and even mouth controls, when that time comes. This chair also can lift him rather high. He can be raised to get things out of our freezer (which sits on top of the fridge). So that feat will be neat and fun to witness. I actually did not go to ANY of the motorized chair appointments because I had appointments of my own in Lock Haven. Our good friend, Roy, from the local VFW was able to drive him the 1.5 hours to Altoona for all three appointments. (I am SO grateful for the break in driving and some time to myself… with Grove.)

The next big issue is transporting the motorized chair (and back when it was just the walker- AND Grove’s stroller) in our two small sedans. The VA is helping us purchase a handicap accessible vehicle! There is even talk of someone gifting us with one from my hometown. Either way, it is a big weight off of our shoulders when it comes to worrying about how to finance it. I would REALLY prefer to not have it be a mini-van, DESPITE everyone telling me that a van will be easier to convert and that the chair will take up less space in a van. It is possible for us to get another type of vehicle to transport it. Roy is working with us and is on my side against the mini-van, but I won’t fight it too hard, or at least I will try not to. If we get the mini-van, Tim can drive the chair right up into the middle and park it in one of the two middle seats. That way the trunk is completely open as well as the third row of seats. If it is another type of vehicle they install a lift onto the back which picks the chair up from behind and pulls it into the trunk, leaving some room for things to be packed around it. Another big plus is that if we get a vehicle that is not already handicapped equipped, the VA will pay for the installations.

It is possible that we will have the motorized chair in as soon as 10 days. We doubt a vehicle will pull through by that point and so quickly. Roy says that they do have a way to transport it back to LH for us. They will also install a ramp to go into our apartment. Which poses our next hurdle to jump. Our place of residence is TINY, and Tim won’t be able to do donuts or anything crazy in it. He can maneuver a few feet. Thankfully, he is not in the state where he NEEDS the chair yet. He still walks around the apartment by holding on to walls and ledges. The next big step is moving into a bigger place that is handicap accessible.  The VA will provide us with a grant to purchase a home or place of residence and a capped amount to do any handicap renovations. We are truly blessed and sincerely grateful for all of the aide we are receiving.

Now, a bit off of the topics that have been talked about is the assistance around the house and with every day obstacles. When Tim was first diagnosed, we were introduced to the “Caregiver” program through the VA. This would allot a monthly income given to me in order to take care of Tim’s needs. This was something that really excited us because ever since we moved back to PA I have been painstakingly searching for employment and had very little luck. Of course, I was pregnant and began life with a newborn during this time as well. But this would mean that I would not have to go and find work out of the home, which is a huge blessing with a husband who’s health is decreasing and a one year old son. When we looked further into it they said we were ineligible because- get this!- “Tim’s disability is not an injury that was brought on during his military time BUT an illness”!!! FOR REALSIES! So we were a bit bummed at this news. However, reading the fine print of the program, we found that any “neurological disorder” is automatic qualification. We didn’t want to fight back the people who told us “no” so we sent our VFW representative and Tim’s PCP through the VA to bother them about it. It went through! We are officially qualified and will get that ball rolling soon.
Tim feels that I am taking on too much and there are times when I do lose my cool. Having a one-year-old in a small apartment where everything is in easy access to him (our son) does not help my sanity. So Tim does hope to get some more aide into the house to help take some of the burden off of my shoulders. A friend of ours pointed out that I still need to stand in my role as his wife and not solely his nurse. We have someone in mind and a program that we hope to look into to help us fund this person.

Maybe some people view these financial assistances and aides as something that we should not share, but I want everyone to know what our expenses actually are and to understand where we are getting the help we need and what we are still struggling with. I feel that it is important to keep those who are sincerely concerned or interested in the loop.

It may seem that we are being well taken care of. We, of course, have not seen all of the promises in action, but we are hopeful.

Some BIG answers to prayer: Practically ALL of this is dependent on Tim getting 100% disability through the VA, which has not happened since January. We heard the rumors that it could take up to 6-12 months for it to go through. With our past experiences with the VA, this didn’t sound too far fetched. If there is any neurological injuries or illnesses during or seven years after active duty in the military, they are automatically bumped to 100% disability. There was a hiccup with this. As we’ve been told, they had Tim’s claim going through under “motor neuron disease”, which IS what ALS is, but for some reason, under that title, the claim cannot be expedited. We got the news, yesterday, that it was changed to ALS and will be immediately changed to 100% disability! So to reiterate our excitement, we have been waiting close to 6 months for this claim to go through and we got a call and it is done right then and there! PRAISE GOD!

Continuing the beginning of this disaster…

Pittsburgh-

You should know that a lot of the details have been forgotten because it has been several months since these happenings.

Sometime between mid-January and mid-February: We met with Dr. Clemens at the VA hospital for neurology. It was around this time that a cane/”walking stick” (as we like to call it, so it is not so old-man-sounding) was gifted to Tim so he started using it to get around. (Bill from Avenue 209 Coffeehouse gave Tim the walking stick after Lock Haven’s student theatrical production of Sherlock Holmes.) Dr. Clemens performed the same strength test that Kathryn Wilt did, only a bit more detailed and took notes. She said there was definitely something wrong. She thought it was a muscular deterioration. For some reason, Tim’s muscles were breaking down. She ordered blood work and wanted to see him again on our son Grove’s birthday in Pittsburgh. She wanted a fellow neurologist to confirm Tim’s symptoms.

 

Pulmonary function test

Tim had a pulmonary function test in Altoona. Later, when Dr. Clemens reviewed the results, she thought that the results appeared to be inaccurate, so she ordered another pulmonary function test—this time, in Pittsburgh. A week or so later, a nurse called regarding the results. Tim has moderate COPD; that is chronic obstructive pulmonary disease. Breathing issues are common in ALS patients.

 

Sleep study

Kathryn (Tim’s nurse from State College) gave Tim a referral to have a sleep study in Pittsburgh. The sleep study was conducted on March 26^th. A little more than a week later, Tim was contacted with the results. No problems were present. Maybe Tim’s difficulty sleeping is named Grove. Or the apartment’s paper-thin walls, loud neighbors, and four dogs next door. Or the train.

 

As Tim loses his ability to walk, Grove is learning to walk better and better.

Tim wants to be useful, but as he loses his strength, especially in his hands and feet, he needs to be more conscious of his own safety.

Tim’s voice has been cracking lately. Sometimes it sounds raspy. He complains of a sore throat after singing only a few worship songs on Sunday. Many patients with ALS eventually lose their ability to speak, so we are worried that his voice may be beginning to go.

Welcome one and all!

We are finally sending out the link so everyone is visiting our blog for the first time. 

The main blog will be about Tim’s health journey through ALS. But we intend to have a link/tab for Grove’s achievements and updates. We hope to set up a donating area- that sounds selfish, but many people have been already asking how to financially help and asking if they can. And possibly more picture updates as well. 

Please bear with us. It is hard getting anything done with our one-year-old, but at the same time we’d rather be with him anyway. 😛 Robyn will be the one mainly posting to this blog and she does not always have computer access easily available. 

Thank you for coming to our blog and taking the time to read our story, pray for us and encourage us. We are so appreciative of you all. 

When it began

I don’t even know how to attempt to summarize what we have been experiencing as a family. But, I will try. This may be long. 
We started noticing some things going wrong in the fall of 2013. Tim was starting his third semester at LHU. He found a group of students to go running with about three times a week. This was normal for Tim, as he was very active. In high school, he was on the cross-country, basketball, volleyball, and soccer teams. Not to mention, he was in the active-duty Marine Corps for five years. The end of his active-duty requirement was reached in August 2012. In the Marine Corps, he took part in activities like: going on hikes or “humps” for miles carrying heavy packs, running for miles, swimming, running with a log (the size of a shortened telephone pole) on his shoulders (with other Marines helping–but still a difficult thing to do), MCMAP (Marine Corps Martial Arts Program) training, PT (physical training) every day, combat fitness test (CFT) and physical fitness test (PFT). Tim also rode his bike regularly until the end of the 2013 fall semester. He received his bike from his awesome wife for his birthday, soon after we moved to Lock Haven. He started coming home and saying several times a week “I fell off my bike today” and “When I tried to run, it felt like I was running through a swamp”. I just sympathized at the time, being a college student and former Marine that had to be humiliating. We both just figured it was from lack of exercise. I did find it odd, but I didn’t think about it much more.  Then, around Christmas time, we started noticing that when he would get down on the floor to play with our 9-month-old son, he had a really hard time getting back up. It would take him about five times as long to get up than a normal person. However, when we thought back to when this could have started, we recalled some things being “weird” towards the end of his time in the Marine Corps. He wasn’t able to keep up physically, and they were worried about his weight gain. They said that he had sub-clinical hypothyroidism. We could date the slow progression back to late 2009, toward the end of his Mediterranean, which is when we started “dating”. I guess dating me broke him down. 😛

Tim was at a VA check up mid-January when we mentioned his weakness to Kathryn Wilt, his PCP. She performed a strength test with him, where he had to resist her and push against her, arms and legs. Kathryn is a petite and small-framed woman. He couldn’t hold her off as much as expected. It shocked me. She was concerned about it and decided it was worth looking into. So she got us in touch with the Pittsburgh VA and Dr. Clemens.

Back on track. New railroad.

It has been quite a while since I wrote or even stopped by this blog. But some life events have called me back into the blogging world. Let’s see if I can get past one post.

Since my last post, we have had the joy of becoming parents to one of the cutest kids you will ever know. Grove Oliver.

We have moved to Lock Haven, PA and have been settled here for almost two years (August 2014)! This is not really what we were picturing or heck, even in our wildest dreams IMAGINING that this would be our story. Yet, here we are. As we planned, Tim is studying Applied Physics: Nanotechnology at Lock Haven University. We are settled and have found many good friendships in a new location. I, Robyn have yet to secure a steady job, but we are hopeful. What we didn’t expect, Grove came into our lives and gave us a never ending joy. Tim, most unfortunately, has been diagnosed with a degenerative neurological disease: Lou Gehrigs/ALS.

Tim’s diagnosis is the main reason I returned to the attempt to blog our lives. We have been so blessed to see an outpouring of love, prayers, support and even financial boosts from many friends and family to help us cope and deal with this scary news. I will probably back track a bit, to when we first noticed things going wrong and what has happened up to this point. But we hope to keep you well in tune with our triumphs, struggles, prayer requests, and health updates (physically, mentally, emotionally and spiritually).

oh, and we live near a railroad now. Just for the reference.

Our son turned one a month ago- March 21. Soon after the celebrating died down, we had three separate parties,