Welcome to Ford’s website. We have created this website in order to spread awareness of Spinal Muscular Atrophy, the disease Ford was diagnosed with at 4 months of age. We also wanted to give those of you who have been praying for our family and mostly Ford the opportunity to get updates on how he is doing and anything else we choose to share. We ask that you please take a moment to look at our “What is SMA” page and learn a little about this disease. We thank you for visiting our site and really enjoy your company!
Please also feel free to email us at firstname.lastname@example.org
I can’t believe you started Kindergarten this year. A day, like most other milestones, your doctors assured us you would never meet. But here we are, you are six years old and attending Kindergarten 5 days a week. Last year Ford was not school age as he didn’t turn 5 before September 1st which meant that he remained at the Intermediate Unit for another year. We were excited to get another year with his teacher Miss Kim but we also were approved for Ford to attend circle time in a classroom at Riverside. We jumped at the opportunity as I was hoping this would be a bridge to start building a relationship with the school district Ford would enter the following year as he started Kindergarten.
Being a part of Mrs. McClean’s class was amazing and we did in fact begin to build those relationships which proved to be so important. We started the process of test driving virtual presence robots to determine which one would be best and most appropriate for Ford to use for the duration of his education experience. Last year we also had the opportunity to meet and sit in on all of the Kindergarten classrooms so we could meet the teachers and view their teaching styles. Myself as well as the school all agreed on the same teacher. Ford was going to be a part of Mrs. Sharek’s classroom. We started building a relationship with Mrs. Sharek as well as the Special Education Teacher Miss Smith who would become Ford’s home-bound teacher replacing Miss Kim.
Miss Kim and Ford
During the summer we test drove a couple other robots having one in mind that we really wanted for Ford to use throughout his school experience. Before the school year started we were informed by the school that they had purchased Ford the VGo. The VGo is the robot we wanted for Ford as it has so many functions that would allow him to experience all parts of the school day. We were super excited for school to start!!!
The first day of school was amazing and the kids all seemed to be excited to meet Ford. Mrs. Sharek had spoken with all the students and explained that Ford would be a part of their class using the robot. Sometimes a virtual presence can be a little scary or nerve racking for the kids but they seemed to be just fine. Ford had amazing first day of school and even got the job as feeding the class pet.
Ford’s experience in Kindergarten thus far has been absolutely amazing. Mrs. Sharek is an incredible teacher who goes out of her way to make Ford included in all aspects of the classroom experience. At the beginning of the year she called me to brainstorm and discuss ways Ford could participate in class and what his capabilities were. She wanted to do whatever she needed to give Ford a wonderful Kindergarten year. She has exceeded my expectations.
Mrs. Sharek sends home folders every week, a folder for each day, that contain all the activities and lessons she is planning to do throughout the week. This allows Ford to have every thing he needs to follow along with his class from home. The VGo has opened Ford’s education world like I could have never imagined. It has given Ford inclusion in a way no other technology device has or would have been able too. Ford is able (with the help of me) to drive the robot around the room and goes up to the board when his name is called. He can sit on his carpet square and also sit at the table with all of his peers. The zoom function is incredible allowing Ford to see anything that is going on in class. Sometimes the lessons are on the smart board, sometimes on the carpet. If Mrs. Sharek is reading a book Ford can see each page clearly.
Working on our writing
Practicing our letters in jello powder
Writing our letters
Calendar and number of school days
The VGo has also made it more apparent that Ford is an active participant of the classroom. This is a huge difference from just using an IPad. He is visually there because of the robot being present. Ford’s peers see him as a person and look at him as any other child in the class. They scream with excitement when he “arrives” at school, they show him pictures they draw, they wave at him constantly throughout the day and share stories of their weekends. Ford goes to Miss Smith’s class for writing every day and a little boy named Oliver walks with him down the hall daily. This shows me the acceptance that I have always hoped would be when Ford started school. They see past the fact that Ford is not physically in school because to them he actually is because of the Robot.
Math lesson on the carpet
Walking down the hall with a friend
Math lesson (Ford has his pond and fish at home)
Ford at the board doing Calendar
Sight word basketball
Ford’s peers showing him their drawings
Ford also participates in some of the specials throughout the week. He attends library, art and music. He is really enjoying going to the specials as well as participating in the academic parts of the school day. The art teacher also sends home the project each week so that Ford can be doing it with his class. She also sent home all the art supplies we would need for the year.
I am just so pleased with how the school year is going and I could not have hoped for anything better. When your child is different and you have to adapt you hope that others will choose to do that with you. Ford’s school has gone out of their way to make him feel included, accepted and wanted. The robot is an amazing thing and it truly has made Ford’s experience that much better but it really comes down to the teachers themselves. Mrs. Sharek has been nothing short of amazing and we are so thankful that she is Ford’s teacher. We are also so thankful for Ford’s other teacher Miss Smith who really helped with the process getting Ford the VGo. She is doing a wonderful job teaching Ford at home on Thursdays (even if we have to get up a half hour early for her ;). We hope and pray that the remainder of Ford’s school years will be just as good as this year has been so far.
Here are some extra pictures
Johnny Appleseed Day
Six, how is that even possible. It seems like yesterday that I was giving you a pep talk to make your entrance into the world. Now you are no longer a toddler, you are my little boy full of spunk and energy. Your birthdays mean the world to me and I am so thankful that God gave us another year with you. We have made so many memories and taken some great adventures.
Your birthday parties are always so fun. I love the anticipation of planning your day. We always do a theme and this year was your Luau!! The day started gloomy and overcast. The weather was calling for rain but I was praying it would hold off until after the party. The sun came out at just the right the time and Ford entered his party by driving his new F-150 power wheel. His present from Mommy and Daddy (with the help of Aunt Jenn and Uncle Matt too). Daddy switch adapted his truck so that Ford could drive it all by himself using his switch . Everyone loved the entrance.
Family all hung out under the pavilion and shared memories and stories. We ate, opened presents, sang Ford happy birthday and took plenty of pictures to stamp the memory of the day forever.
Hawiian pulled pork
Pina Colada Coleslaw
Ford opening presents
On May 27th Ford graduated preschool. He graduated!!!! A milestone at one point in this journey we thought we would never see. A milestone that doctors assured us he would not reach. But here he is, a preschool graduate; a little boy preparing for all that comes with moving into Kindergarten.
This past year Ford remained with his home bound teacher Miss Kim but we were also welcomed again into a preschool classroom setting two days a week via the Ipad. This would allow Ford to not only experience the classroom setting but also engage with his peers. His teachers Mrs. McClean and Miss Harshall welcomed Ford into the class and allowed him to experience all the aspects of the preschool classroom.
This years experience was absolutely amazing! He participated in the class at the start of the day. He did circle time which included the Pledge (one of Ford’s favorite parts) calendar, learning and reviewing numbers, letters, colors, and the weather. The class then did a lesson with a a worksheet or craft. Ford really seemed to enjoy and engage in school far more than he had in past years. The kids loved talking with Ford during snack time. Mrs. McClean would put Ford at each table and his friends would tell him about their day before, their weekends, all kinds of stories would be exchanges between them.
Ford got to be involved in so many things this past year, one being The Bug Show. His first school concert and now he got to be a part of the End of the Year Program and Graduation. His picture hung on the wall of the cafeteria with all of his classmates. He practiced with his class for the show and performed on Friday afternoon for all the parents.
This is Ford singing in the concert
When the concert was over the graduation ceremony took place. Ford’s name was called along with all the other kids to received his diploma.
We again are jut so grateful for the experience that Ford had with Miss Harshall and and Mrs. McClean’s classroom. He had an amazing year!
We are also so lucky to have had the pleasure of working with Miss Kim for the past 3 years every Friday. Ford did school with his class on Tuesdays and Thursdays and then Miss Kim came as his home bound teacher on Fridays. Ford loved the one on one time he got with Miss Kim. She really had the ability to bring Ford’s personality to light in a different way. We are really going to miss her next year but we look forward to all the new adventures Ford will take in Kindergarten.
Friday morning Miss Kim came to do her final school session with Ford. Miss Lisa, Ford’s speech therapist also came and Ford was able to do some fun graduation projects with them and give them some gifts to show our appreciation for the past 3 years. Ford received another diploma from Miss Kim for graduation from the intermediate units program.
We are very much grateful for all the experiences that Ford has been able to have over the past couple of years. There are so many things that we thought he would never get to be able to do because we just didn’t know if he would be here. He is here and he is strong. The Lord has blessed our life immensely and given Ford so much. We look forward to what Kindergarten will be like and Ford making new friends and new memories.
Ford has been working with the same home bound teacher for the past 3 years. We are lucky that she was able to continue working with Ford as he has grown so much and we have grown so close with Miss Kim. This was her last year getting to work with Ford as next year he will be school age and will move into Kindergarten. Miss Kim wanted to do a fun end of the year project with Ford so he ordered him a butterfly kit. He could grow butterflies at home and release them in the back yard.
Ford loves nature and being outside. He watches the birds, butterflies and enjoys hanging out in his garden that Make a Wish granted him last year so this was right up his alley. The butterflies arrived and you basically just have to watch them grow and move through the life cycle. This is what they looked like when they arrived.
Then they got a little bit bigger!! That brown stuff in
the bottom of the jar is their food.
And they got even bigger….
They then formed in their chrysalis. We removed the lid from the cup and placed it in it’s station and just waited until they emerged at beautiful butterflies. One of our caterpillars didn’t survive and they other one just fell of the lid.
Once they emerged as butterflies we fed them sugar water and placed flowers in their net so they could eat. We had to wait a couple of days for their wings to dry out before we could set them free.
Miss Kim came for her session with Ford and they learned all about caterpillars and butterflies. They read books, watched movies on you tube and then we went outside to set his butterflies free. They were so easy to pick up on your finger and they allowed you to set them down for a bit before taking flight. Dozer (Ford’s puppy) thought they were fun the chase as well. Here are some pictures of the actual butterfly release.
It was so nice of Ford’s teacher Miss Kim to do something so special with him for her end of the year project. We have had an absolute blast having her in our home to teacher and instruct Ford for the past 3 years. We love how much personality and sassiness she has brought out of him. He has grown so much and we are forever grateful for her coming into our lives.
I wanted to give an update on Ford as so many of our friends have been keeping him in their prayers. Ford has remained pretty healthy since he was diagnosed with SMA at 4 months old. He has been hospitalized 2 times in 5 years but other than that he doesn’t get regular colds or illnesses. He is a happy boy and loves a lot of things that five years old love.
A little over a month ago we started seeing signs that Ford was having trouble with something. It’s hard to know what is going on with Ford sometimes because he can’t tell us what is wrong. We didn’t know if he was maybe getting some teeth, something on his body hurt like a fracture or broken bones. We had to just start guessing. He was getting up at night crying for hours on end and nothing we did seemed to make him comfortable. We started troubleshooting and it seemed that there was something going on in his GI system.
Ford was getting a lot of gas trapped in his belly so we started trying to feed him through a 60cc syringe which was going to help him release the gas a little better. We were giving him gripe water and other gas meds to try and alleviate the discomfort but it didn’t seem like it was working. He was still waking up in the middle of the night but now he was pushing his food out of his belly and up the syringe. We started to see that he wasn’t digesting his food. Normally when we do respiratory treatments we vent Ford’s belly meaning any food that he may still have in his stomach comes out. This helps reduce the chance of aspirating anything into his lungs. We needed to find out what was going on in his belly so we started trying a couple different things.
We started out with his diet and took everything out of it except for what we call a basic mix and giving him only his juices and solids during the day. We were thinking that maybe his stomach was slowing down at night time. He seemed to still be having trouble so we then started giving him a basic mix for the whole day. We scheduled an appointment for him to get an x-ray of his belly to see if he maybe had some type of blockage but the x-ray came back normal. We also did a chest x-ray, sputum and stool cultures and all of those came back completely normal too.
We spoke with his specialist in Wisconsin and she has three ideas. She stated that a lot of times they anticipate SMA kids to develop GI problems with their low muscle tone. Ford was either suffering from food intolerance or maybe having bacterial overgrowth which we would need to see a GI specialist in order to find out. Since we had removed everything from his food we were on the right track to figuring out if something in his diet was bothering him. She also mentioned that he may need to be on a medication to help him with GI emptying. We met with his pediatrician because we cannot get into the specialist until March 22nd and she suggested that we start a medication for acid reflux.
Ford started on Zantac last Thursday and that was the first night that he slept for almost the whole night. We kept him on his basic diet to try and give his gut and belly a break and will add things back into his diet little by little. We have to add things back in slowly to test for anything that he may no longer tolerate. He seems to be doing so much better with the reflux medication and we did recently figure out that he may not be able to tolerate pear juice. We had added some back into his diet and he started having a higher heart rate and showed some signs of what was happening a couple weeks before. He didn’t have the best night so we emptied hi stomach and I made him a new mix in the middle of the night. After he started back on his mix he slept through the night. We will continue to add more things back in slowly to see if anything else bothers him.
We now are having a little trouble getting Ford to go with the bathroom himself. Most of the items we have in his diet are there to help him have BMs on his own, something that can be hard for our kids with low muscle tone to do. So we now ask that Ford will continue to improve and we will maybe know some more answers after we see the GI specialist. We also ask that you please pray that Ford will start having BMs on his own without assistance. We are doing good on his diet and may still need to make some changes but we are moving in the right direction.
Thank you again for all your prayers
A little late but here are Ford’s Valentine’s Day pictures
As we ring in the new year most people are thinking about their new years resolutions and goals that they hope to accomplish or succeed in during the year. Most of those goals include things like losing weight or becoming more healthy, getting a better job, buying a house, etc. All those things are great things and I know I will be working harder to be healthier but this year I really want to focus on my spiritual and emotional well being and relationships.
I want to wake up each day and commit to being joyful!! We live in a destructive world that focuses on the negative and it can really be devastating to your well-being. I think I may be a negative person, or at least someone who looks at the negative aspect before the positive more often than I’d like to admit. I try not to be this was and that is something I really need and want to improve on this year. My life can be very hectic and stressful. Do I let that stress take over my life or do I remember all the good in my day, all the good in my life? There is a lot of good!!
A lot of time I feel inadequate as a mother, wife, sister, and friend and I know that I can do better. I think that every person in the world has felt this way one time or another but it can be a hard pill to swallow. I can be mean and have a sharp tongue and some days a person that just can get my stuff together. I could blame it on a lot of things but the fact of the matter is this is my life and I need to take responsibility for my emotions and my actions to those emotions. I want to be a more joyful person and I know exactly where that joy needs to come from on a daily basis.
My relationship with Jesus. I have allowed myself to drift, to not talk to Jesus every day, to not spend time with him, to not be in his word. I can make all the excuses in the world about how my day is so busy taking care a special little boy and keeping up with all my house work but those are just that, excuses. What a forgiving and graceful God we serve that no matter how many times we mess up or drift away from him he will welcome us back with open arms.
I know that Jesus loves me even with all my short comings and boy am I thankful for that. So I guess this blog post is getting a little more personal than I had planned it to but at least this is a way for me to be more accountable to myself. I have said it here out load that I need to make Jesus a priority in my life. Not just a priority but my first priority. I want to commit to talking to him more every day. To spend time with him in his word and really seek him!!
I am going to wake up every day with the a decision to make, am I going to be joyful or negative? I hope that most day I can choose joy!! Here is to trying harder in the year to come to fully bettering myself.
This past spring we did a massive fundraiser to try and assist us in purchasing a new van for Ford. He is an only child but was quickly outgrowing his van. During that fundraiser we were able to raise enough money to get a new Ford Transit for Ford and in turn gifted our old van to another family. With our new Van we had some big plans and one of those things was to take our first family vacation to Florida.
We have been a couple places for a weekend getaway but we have never been able to go on an actual vacation. Scott’s main work season is during the spring to fall months when SMA families don’t have to fear as much from germs which leaves very little opportunity to get away for a longer period of time when the weather is nice and comfortable for Ford. Trying to travel in the winter isn’t ideal in PA but when we were given the chance to try and get away to FL we wanted to go. So we made sure we were extra careful to keep Ford healthy as last year during this time we were in the hospital. We really wanted to give Ford this experience.
Scott’s Aunt lives in Florida and she offered to let us come and stay at her house so we took her up on the offer to get away from the cold weather. Little did we know when we planned the trip that it was going to be 70 degrees in PA when we left!! It was nice though to not have to drive in the snow!!!! Packing for 10 days was a little intimidating as we have never been away for more than a weekend but I made lists and lists So we packed up the van and a trailer Scott got and started on our way!!!
The farthest we have ever driven with Ford is to Wisconsin to see his specialist, which is about a 10 hour drive (for us that turns into maybe 12-14 depending on stops) Florida was about an 18 hours drive minus the stops but we were not planning to stop at any hotels for the night. The amount of time it takes to unload all of Ford’s necessary equipment and supplies its just not worth it to us. So we sleep in the van and this is our set up.
This is where Ford travels when we go on a long trip. We have a 3 inch memory foam on top of this bench seat in the van. This seat can also lay flat which is nice as it allows him to be much more comfortable than traveling solely in his stroller.
This is where we have all of Ford’s equipment at an arms reach. When traveling we still have to do Ford’s daily treatments so this really helps. The picture below is where I sit. It also shows a control panel Scott installed so that we can run the inverter and all of Ford’s equipment on the go!!
This was our set up at night while we took a little break from driving to sleep
We left on Saturday early afternoon and we arrived in Florida on Monday afternoon. When we arrived the weather was gorgeous which we were super excited about because Scott’s Aunt Annie had told us that it has been raining a lot the last week. We didn’t have anything planned for the trip but relaxation and family time but we really wanted to enjoy the weather and scenery. The view from Annie’s patio is stunning.
Dozer got to meet a new friend, Crosby!!!
This first day we enjoyed sitting out on the patio taking in the view. We had dinner with Scott’s dad and Aunt and then called it an early night as we were tired from traveling. Here are some of the pictures I captured.
Over the next day we hung out on the patio and showed Ford all the cool trees and plants that were around. We watched the boats drive by and even tried to teach Dozer how to swim.
We also go to do some things with Ford that we have never done before. Ford got a fishing pole for his birthday so we thought we would take him fishing off the dock. Daddy and Ford practiced casting in the pool and then we went to the dock to fish. We didn’t’ catch anything but we did see three huge fish (which would have been too big to reel in with Ford’s pole) Scott grabbed a larger fishing pole in case any other big ones swam by but we had no luck. Maybe we will try that activity again once summer is here. One evening we also walked Ford through the neighborhood to look at everyone’s Christmas lights. We don’t live in a neighborhood so we usually drive around to see the lights. This is great as Ford was able to see everything up close.
Daddy teaching Ford how to cast his line
One day we decided to go to the large park that was just in town to walk around. There were playgrounds, tennis courts, pools, soccer and baseball fields. We walked through the park and enjoyed the trees and critters. We ran into a little squirrel that enjoyed playing with us.
We had a wonderful time and were able to have some down time to just enjoy each others company. We did decided to stay a couple more days then we planned and would have stayed even longer if we weren’t getting back two days before Christmas!!! Here are some more stunning pictures of the beauty in Florida.
We got home from our trip late Monday evening so we only had two days to get ourselves settled and ready for all our Christmas visitors. Good thing I had all our shopping and most of the wrapping done before we left. I only had to unpack, do laundry and grocery shop since my Mother in Law was so kind to have the house all cleaned.
On Christmas even we had some of Scott’s side of the family over during the day and again in the evening. I always enjoy the company of family. It was 70 degrees on Christmas Eve so we even enjoyed some time outside. We had great food, opened presents and shared stories and memories from the year!!
Ford’s Aunt Val and Uncle Rich
The rest of Scott’s Family, Aunt Jenn, Uncle Matt Grandma and cousins home from college
Then Christmas day we woke up and ate breakfast, opened our stockings and then opened up our presents with Scott’s mom and each other!! The rest of the day we spend relaxing and playing with some of Ford’s toys!
Then Saturday my family came to do Christmas with us!!! It was another great day with family and I was especially excited to spend some time with my brother and sister in law Bekah!!
We are so thankful that we got to get away and experience a family vacation. I am also so happy that we got through the holidays with Ford being healthy and just being able to be home and enjoy the holidays with our families. It’s incredible to make memories with Ford and we are so excited to see what 2016 brings us.
We hope all had a very Merry Christmas!!!
I can’t believe how behind I am on this blog and I hope that in the new year I can up with it a lot better as I love to share Ford’s life and his adventures. Something really cool happened not too long ago and something I never thought Ford would ever be able to do. This year Ford is participating in a preschool classroom that in our school district. We did this so that we could start building a relationship with the district and the administration so that they are familiar with Ford once he reaches “school age”. He is five years old but since he is a September baby he was not able to start Kindergarten this year and is doing another year of Preschool.
This year his teacher is Mrs. and she has done an amazing job of including Ford in everything. She sends me the lessons via email so that I can get an supplies needed so that Ford can do the same thing his class is doing from home. .He Facetimes with his class two times a week for the morning circle time and lesson. This year we have had the opportunity to use a Robot by Double Robotics instead of just the Ipad so that Ford can participate with his class from home. The Robot has allowed Ford to participate in activities that he may not be able to with just using the Ipad. When using the Ipad someone may have to hold it and move it around the room depending on the activity. When using the Robot I can control it and move it remotely from our home so that Ford can participate in a lot more in class.
This year Ford participated with his preschool class in his first school concert…the Bug Show!!! Ford dressed up like a Bee with some of his classmates and other dresses as butterflies and other bugs. They sang songs about bugs to their parents in the school cafeteria and Ford was able to be there via the robot. We are so grateful for technology and how it is opening doors for inclusion of all kids, especially a child like Ford who cannot physically attend school.
Here is a picture of Ford with his class.
Ford has had a pretty busy month so far with some great Fall activities and we just wanted to update you on how things have been going in our world. As many know we lost our beloved dog and best friend Moose in the middle of September. He was the best dog anyone could ask for and was so gentle around Ford. He protected him and loved him. It was hard loosing him and he will forever imprinted in our hearts. When you have a dog for so long and then they are gone everything seems weird. Moose was no longer here to greet us when we woke up or run to the door excited about going for a ride in the van. We missed him and still miss him terribly. At the end of the month we decided we would try and get a new puppy in hopes that it would aid in the healing process of loosing Moose. We searched the internet and found a family in Pittsburgh that had 6 pitbull puppies. We came home with this little guy and named him Dozer. He is a joy when he isn’t doing naughty puppy things and he loves to cuddle when he is in his calmer state of mind. Ford loves to cuddle with him and we are trying to take advantage as long as we can because Dozer won’t stay small forever.
Ok so onto the fall fun adventures. We took Ford to the local farmer’s market after his 5 year check up and he picked out 4 pumpkins to decorate the porch with and eventually carve as a family. On Mommy’s birthday we decided to take Ford to our friends Farm who runs a pumpkin patch and all together Family Fall Festival every weekend. Ford got to feed loads of animals including pigs, horses and goats. We looked at the Llamas and bunnies and we think Dozer made some new friends. too.
Mommy also took my Fall pictures. You know how she just loves to take my picture!!! Here I am looking as handsome as ever!
My mom also loves to be creative with my Halloween costume. This year we decided I was going to be an astronaut. How cool is that, a man who flies into space and lands on the moon is what Mommy was going to try and achieve, Daddy made me a DIY Astronaut helmet because my costume only came with a baseball hat and we all know that you can’t go to space without a space helmet. Here are how my Halloween pictures and costume turned out this year.