Fight for Ford Website

Featured

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 fightforford@gmail.com

 

Kindergarten Inclusion

When Ford was first diagnosed with SMA at 4 months old we were told that he would never go to school.  It was a milestone out of reach when the doctors tell you your only child will survive to be a year old, maybe two.  Ford is now 6 years old and proving the odds wrong. He is just like any little boy who loves all things superheroes and being outside.  When we knew that school was going to be an option for Ford we had to think of how he could participate and be a part of a classroom but also remain healthy.  I want nothing more than for Ford to be able to actually be in a classroom with his peers but for us it just isn’t the safest option in keeping him healthy.  Ford has been sick two times in his life and both of those times landed him in the hospital intubated.  We want to give Ford all the experiences we can, so we are always looking for the safest way and that included going to school.

So how was Ford going to attend school and remain healthy?  This journey began by starting  a process to get Ford a virtual presence also known as a “robot” called the VGo.  I started talking to the VGo reps about the steps we needed to take to introduce this device to Ford’s school.  I began working with the superintendent and special education teacher at Ford’s school making my case as to why the VGo would be the top option in giving Ford the best possible educational experience.  We tested out a couple virtual presence options all the while I never wavered from the idea that Ford needed the VGo. So we just had to wait for the school district to make their decision.

Before the beginning of the year we had been given the good news that we had come to an agreement with the school that Ford was going to be using the VGo. The VGo would be a virtual presence that would be in the classroom for Ford while he would be at home on the other end of the computer.  Once I knew we were getting the VGo my excitement for the year grew as I knew it was a tool that was going to make Ford’s education a wonderful experience.  The first day of school came and my nerves were back in full swing.  Would kids accept Ford, would they really see him as part of their class?  The questions in my mind were endless.  Would my idea of inclusion really be a reality for Ford in Kindergarten?

We are almost to the end of the school year and Ford’s Kindergarten experience has been far beyond what my expectations were at the beginning of the year.  Ford has been a part of every aspect of every school day all year long.  He participates in all the academics throughout the day as well as the special events. He attends three specials throughout the week, (Art, Music and Library) as well as field trips. Ford attends school Monday through Friday all day only taking a break while the kids go to lunch and recess.  Ford currently doesn’t attend recess because the VGo wifi signal will not reach outside the building, but this is something we are hoping will be resolved for the start of first grade.

(music class)

(Library)

(Art)

Ford has built relationships with his classmates and has academically progressed amazingly throughout the year.  I know there are so many parents of other SMA children who strive to be able to give their child the best school experience and for us the VGo has been the vehicle to make that happen in our child’s life. Ford’s teacher makes sure that he is apart of everything that they do at school.  She sends home folders for each day of the week with all of the materials he needs to follow along during the school day.  He participates in all the academics and does his homework assignments the same as his peers. Ford is also held accountable for answering questions like his classmates, taking his turn at the board and following along with stories or worksheets that need to be completed.  I love that he is being held to the same standard as the rest of his peers.  Ford is not able to do things on his own so with my help,  or assistance from one of his nurses he is able to fill out his worksheets, write his sentences, or flip the pages of the books we are reading. Every activity his classmates are doing Ford is doing the same. We are constantly asking Ford “yes/no” questions to get him to tell us answers and make choices. He identifies his site words and is expected to answer “yes/ no” questions when it is his turn.

Ford is assigned jobs throughout the week too, just like all the other kids. You never know if your stick will be pulled for a job but Ford loves them all!!  He has been Calendar Helper, Teacher Helper, Pet Feeder, Line Leader and Office Helper. Ford takes his job very seriously whatever it may be.  He loves snack bunch time. It is an event during the day when Ford gets to learn more about his peers and they about him.  Mrs. Sharek created snack bunch as an opportunity for Ford to create and develop better peer to peer relationships with his friends.  Ford usually enjoys a snack at home while his friends eat theirs at school. Ford also loves Fridays which is “show and tell” day!!

(line leader)

(Calendar Helper)

(taking morning papers to the office)

(Snack bunch)

(Show and Tell)

Ford loves all aspects of his school day and he really started to create some amazing friendships and bonds with his peers.  I find that the VGo is the instrument that has allowed those relationships to grow and strengthen.  The VGo permits Ford to be present within the classroom by “physically” being there,and the kids look at the VGo as Ford not a robot. At the beginning of the year Mrs. Sharek talked with all the kids about the reasons why Ford is unable to attend school and that doesn’t seem to matter to them.  They don’t see Ford’s disability, they just see Ford. Kids hearts are so big and the greatest emotion they show is love.  That’s the amazing thing, they love to Ford and embrace him on a daily basis. As soon as we call in for school in the morning the kids are all ready to say, ” Good morning,” to him. They fight over who gets to walk with him in the hall, who gets to sit next to him, who gets to partner with him.  Its an indescribable thing to witness children just be that, innocent and non judgmental children.

The VGo also has allowed Ford to be part of special days at school.  This is one thing that changed coming into school this year.  In the past if we had Skyped into a classroom someone had to be there to help “hold” the Ipad.  The VGo opened the door to Ford to be more independent throughout the day being able to move freely through the classroom and school with only the help of me or one of his nurses at home.  We drive the VGo on our end from a computer. The VGo doesn’t interfere or give the need to interrupt the rest of the class to participate.  Ford’s class has had several special days at school and Ford has loved every single one.

(Johnny Appleseed Day)

(Camping Day)

(Halloween Party)

(100th Day of School)

(Breakfast with Santa)

(Pictures with Santa)

(Picture with Easter Bunny)

(Movies at School)

Another thing that the VGo has permitted Ford to do is participate in Field trips.  This year Ford got to attend a Royal Ball at a castle as well as a day at The Children’s Museum.  We connected to the Wifi at both locations and this gave Ford two more amazing experiences.  Ford had a blast dancing with some of the girls at the ball and had an awesome time exploring all the rooms at the museum.  The VGo has given Ford the chance to be accepted as just one of the kids, a hashtag we always use when posting pictures of Ford and his classmates!!

 Children’s Museum

(Royal Ball)

So I am so hopeful for what the remainder of Ford’s educational experience will look like.  The VGo has been an incredible tool this school year but the real experience has been the relationships Ford has built with his peers and Mrs. Sharek.  It takes a special teacher to have a child like Ford in their class because its more than just teaching. Mrs. Sharek has done nothing but accept Ford and the journey of him being one of her students from day one.  She honestly has crushed it when it comes to giving Ford opportunities and experiences.  The VGo is amazing, but I feel that is is Mrs. Sharek who has given Ford the chance to reach his greatest potential in Kindergarten.  I am so excited to continue to see Ford grow as a child as well as a student.  I will continue to thank Riverside School District for believing in Ford enough to give him the opportunity to attend school using the VGo.  In my eyes it was the best decision you could have ever made! This is what real school inclusion looks like and I am so proud that this has been our experience.

I hope that through this blog we can help  advocate for other SMA children and their families to get+ the VGo or whatever virtual presence you feel is the best fit for your child.   I personally know that Ford’s education would not be the same without the VGo and we are so excited to see where first grade takes us next year.  Here we come Kindergarten Graduation!!!

Team Ford at Riverside Elementary

Ford started Kindergarten last year at Riverside Elementary School and since he started every day has been an adventure.  Ford’s class and his teacher have been amazing the entire year and this week has been no short of spectacular.

Before Christmas Ford’s teacher Mrs. Sharek approached me about doing some type of fundraiser for Ford to spread SMA Awareness throughout his school.  The time came and Mrs. Sharek decided that they were going to sell Team Ford bracelets the week of May 1st and then the whole school Kindergarten  through 5th grades would wear those bracelets and Ford’s favorite color blue on Friday.

The support that Ford’s school showed throughout the week was amazing and they actually ran out of bracelets on Wednesday. I was told that getting a Team Ford bracelet was a must have item!! Today was Friday and the day everyone in the school was to wear blue to show their support for Team Ford and the students did not disappoint!!

Here are pictures that the primary teachers took throughout the day.

We want to thank Mrs. Sharek and the Riverside School District for the support that they have shown Ford not only this week but throughout the school year.  We are so happy that the parents of Ford’s classmates showed their support in allowing their children to purchase bracelets.  I am so grateful that their have been so many people touched by Ford and his story and I am so excited that there are more families who have learned about SMA through this experience.

Fall Fun

Fall is my favorite time of year.  It’s so funny because I remember as a kid when myself and my siblings would all be crammed in the back of my parents car my mom would oh an ah over the colors of Fall and how it was her “Favorite time of year!!” Now that I am an adult and actually appreciate a lot of what life can give us and the colors of the world God has painted I find myself saying the exact same thing as my Mom.  I love Fall, I love everything about it.  I love the changing leaves, the cool air, sweatshirts and boots, pumpkins and decor and of course, I am obsessed with anything flavored pumpkin.

I also love Fall because in the start of the season (Before it gets too cold) its the best time for Ford.  He can breathe easy in cooler air and we can enjoy a lot of what Fall has to bring together. We can hang out on the porch or under his pavilion and swing. The colors of the leaves around our house turned so bright last Tuesday and I just had to snap a picture.   We can enjoy the scenery we have around us on our land from our back yard or front.

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We also have come to start traditions in our family and some of those come during Fall.

I love to bake which is a passion I believe Ford shares with me  He really like to operate the mixer with his switch.  So every year we make pumpkin cookies with an amazing buttercream frosting.

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Another tradition we like to do is taking Ford to the pumpkin farm.  We went to a new one this year and Ford loved it.  It was called Yeck’s Farm and the owners were such a nice older couple.  They came over and talked with Ford and told him all about the Turkeys.  This farm had a corn maze which is something Ford has never done before and was very excited about.  We looked at pumpkins and Ford picked out three for us to carve.  Then we walked around back to look at all the animals.  They had turkeys, goats, a sheep and a donkey.  Around back is also where the corn maze was which we actually had all to ourselves.  Mommy got a work out pushing Ford’s stroller up the hills.

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Here is the amazing corn maze

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Another tradition we like to do is to carve our pumpkins that Ford chose at the farm.  We did this last weekend.  Ford helped Daddy dig out all the pumpkin guts and then Daddy carved.  Of course we had to switch over to actual knives so Ford couldn’t help with this part.  I don’t know why I buy those carving kits every year when the little knives bend with your first cut.   But once Daddy was done carving Ford helped push the eyes and nose through.  Grandma carved a pumpkin as well and here are our finished works.

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And lastly we always make Ford’s nurses and therapist some good Halloween treats. This year we made caramel and chocolate covered apples.  Look how yummy these look!!!

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This is Ford also got to participate in his schools’ Halloween party!  He absolutely loves school this year and he is doing amazing.  The party was in the afternoon but the whole school day consisted of different Halloween activities. In the morning they played bingo, did fun worksheets and made crafts.

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In the afternoon the kids passed out their treats to each other which Ford really loved.

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After passing out candy the students all changed into their costumes for the class party.  The class played a bunch of fun games which Ford was able to be included in. Miss Smith came to the classroom and stood next to the Vgo to play the games for Ford.  After the games they did a costume parade through the school and outside so all the parents could see the costumes.  The Vgo’s connection will not reach outside so Miss Smith called us via Facetime so that Ford could be included in the parade.

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Fall has been so great and we enjoyed doing so many things and making many memories. We hope that everyone had an amazing Fall as well and enjoys that coming holidays!!

 

Ford’s Halloween Costume

Coming up with Ford’s Halloween costume is something I look forward to every year.  This year I was a bit behind after getting everything ready for Ford’s Luau birthday party in September.  I am usually on the ball way before his birthday with at least an idea.  I’ll tell you what, going to school with Ford every day takes up a lot of time.  My dirty house can be my witness!!  So after Ford’s 6th birthday celebration was over I had to put my thinking cap on and come up with something. We have done so many cool things in the past and I wanted this year to be just as good.  Here are some past costumes that we have done if you are new to our blog.

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Everyone knows Ford’s love for super heroes (he gets it from his Daddy) so I thought maybe we could do something with his favorite super hero, Thor.  But them I remembered that I took pictures of him as Thor for his 3rd birthday Superhero party.  So with the release of the new Captain America vs Iron Man Civil War I thought about a fight scene.  When we watched the movie we had decided we were Team Captain America so how cool to do a fight scene with Captain America and Iron Man.  I searched the internet for a picture to inspire me and I found one that I loved.

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So I began to think about how I could make this scene come to life. This was going to be a great option because Ford is still able to be put on his sides so we could replicate a fight scene with him.  I bought Ford’s Captain America costume and started looking for an Iron Man cutout.  Can you believe that I could not find a single Iron Man cardboard cutout that had a side view.  Everything was him standing straight ahead with his hands either at his sides or one hand out .  So we gave up on this idea and started looking for some other inspiration.  I found this other great picture and we decided that this was it.  Ford was the focal point of the picture and it was going to be an amazing shot.

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I started gathering items I needed to create a background that was similar to this and searched the internet for all the members of Team Cap.  Now I know that this picture shows Agent 13 but Scott thought that we should put Black Widow in the picture instead because in the end she supports Team Cap!!  My mother in law helped me paint the background on sheets and then I used that spider webbing for the fog.

On Sunday we decided we would take Ford’s pictures.  I originally was going to try and keep Ford’s head to the side as that is what is most comfortable for him to control his secretions but then he was able to put his head midline long enough for us to snap some good pictures.  He was really trying to wiggle his head back and forth too which is always great to see him working so hard to move things.  So here are his amazing Halloween pictures for 2016!!

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HAPPY HALLOWEEN!!!!

Kindergarten

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.

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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.

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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.

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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.

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Working on our writing

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Practicing our letters in jello powder

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Writing our letters

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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.

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Math lesson on the carpet

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Walking down the hall with a friend

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Math lesson (Ford has his pond and fish at home)

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Ford at the board doing Calendar

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Discovery board

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Sight word basketball

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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.

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Library

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Art Class

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

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Johnny Appleseed Day

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Hat Day

Ford’s 6th Birthday

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.

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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.

THE MENU:

Hawiian pulled pork

Chicken Kabobs

Grilled Pineapple

Pina Colada Coleslaw

Fruit Kabobs

Cupcakes

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Ford opening presents

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Family Pictures

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Preschool Graduation

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.

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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.

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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.

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This is Ford singing in the concert

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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.

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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.

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PicMonkey Collage

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.

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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.

 

Butterfly Release

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.

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Then they got a little bit bigger!!  That brown stuff in

the bottom of the jar is their food.

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And they got even bigger….174c78c9-d4f1-476d-8882-0d23852fdb24

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.

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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.

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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.

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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.

 

Struggles in the SMA Journey

 

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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