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
It has been quite a long time since we have ventured out of the house for an overnight stay somewhere. Ford pretty much stays in the house through the winter months except for a couple drives to see Christmas lights. Then the weather stayed cold for so many weeks. Scott’s work schedule is about to get crazy and we have been trying to escape the house and make it up to our camp for about a month. Every weekend gave a forecast of rain and the one weekend that looked nice Scott’s work booked a job and he was gone. Finally last weekend the weather looked beautiful and it was going to be a 4 day weekend which was a plus.
Scott worked half a day and I packed everything we could possibly need for the next four days. You think it is hard to pack for a vacation, try packing for just a weekend for a child with SMA. There is so much to think about, every scenario that could happen and how to be properly prepared is a task in itself. I packed what I could the night before (cloths, blankets, etc) and then packed the remainder in the morning while Ford was working with his teacher Miss Kim. We were all set and Daddy packed up the van and our car.
This is about half of what we packed
We arrived at camp and Scott unloaded and got all of Ford’s equipment settled in its place. I love that it stays light out so much longer so we were still able to take a little walk around camp. Ford didn’t take a nap so he ended up falling asleep pretty early. Scott and Ford’s grandma watched a movie while I embedded myself in my book Divergent. I was excited to hopefully have so real time to just relax and get some reading in this weekend.
The following day Ford must have been excited to start exploring camp again that he woke up at 4am. I laid in bed with him and tried to explain that we were on vacation and we should all sleep in We all got up after Ford’s morning treatment and cooked some breakfast. We started our exploring early and just as we were about to start our walk Ford falls asleep. Little stinker, but it’s what happens when he wakes up so early. We did end up getting a short walk in after nap time before it started to rain. It rained on and off the rest of the day but it was still beautiful. During a break in the rain we sat on the porch and lit some sparklers. That night we also ordered pizza which Ford LOVES to taste.
The next morning we ventured out for a walk in the morning before the humidity got too much and wondered into the woods a little. The bugs were awful but we had Ford loaded up with bug repellent. Ford talked the whole time we wheeled him around camp. He loves looking at every possible thing his eyes can catch.
After Ford’s short nap we were doing something very exciting. Ford’s grandma and papa live pretty close to camp so we decided to go to Grandma’s house for a visit. Uncle Ryan came up to visit with us too!! Grandma of course made a crazy amount of food but we enjoyed a picnic in the yard. My parent’s house has a huge back yard so we wheeled Ford through the yard and Ford checked out all of Grandma’s bird feeders. We parked Ford’s stroller in the shade and grandma gave him an ice cream sandwich. Ford also got the hang out with grandma’s dog Gigi. He loves Gigi because she is so small she can fit right under his arm and cuddle. Ford can’t cuddle with out dog Moose
On our last day of camp we spent the morning walking around camp again as it was a beautiful morning. The weather was just too nice to stay in doors especially because we were going to be in the van for a couple hours on the way home. After lunch Daddy packed the car while Ford played his Ipad and then we were off to visit Grandpa Dennis. His grave site is near camp so we don’t ever leave without spending some time with him too. Grandma planted some beautiful flowers too.
All in all it was a great weekend with much relaxation and exploring. We loved visiting grandma’s house and hope to make another trip soon!! I also finally got to meet my nephew Levi which touched my heart so much. I am hoping for a cool enough summer to be able to take Ford on some great adventures these next couple of months!!!
Hope everyone had a wonderful Memorial Day weekend and remembered all those who served our country and have fought or are fighting for the many freedoms we have in this country.
Every year I have written a blog post on Ford’s D-Day (diagnosis day) to just reflect on how the past year has been. Every year as the day came up I used to remember traveling to Philly praying the whole day that this doctor was going to see something in Ford that could allow him to tell us, NO your son does NOT have SMA, but that didn’t happen. Every year I think I would think about how our life would be different if Ford was healthy, it would be so different.
However, this year Ford’s D-Day came and went (Feb 3rd) and I didn’t even think about it. I think in some odd way I have just decided to stop focusing on the past. Why do I make myself sad on the day, Ford is still here. He is beating the odds. He is living, so why try and remember what it felt like to hear those devastating words. Why would I not focus on how Ford is doing now? I can’t go back and change the past, I can’t take Ford’s SMA away, even though I wish every day I could trade places with him, but I can’t.
What I can do is focus on the positive, focus on the present, focus on the fact that Ford is still here. Some families aren’t as lucky as they have had to give their children back too soon. I still get to kiss Ford goodnight, I still get to snuggle him in his bed, I still get to sing in his little ear. I still get to see my child every day. So here we are living our lives day to day and that is all I can ask. We will not look back, we will embrace this life, a life at one point I certainly did not think I was strong enough to handle but Ford is my strength.
Here is to living for the future and never looking back.
We hope that everyone had a wonderful Valentine’s Day yesterday. We spent our night hanging out at home cherishing each other and snuggling. I just love climbing up into Ford’s bed ( I actually do have to almost climb since we got him a raised bed) and snuggling him up! Best feeling in the whole world.
Did you tell those close to you that you love them and appreciate them?
I appreciate my husband so much. He is such a hard worker and he never seems to stop working. When he comes home from work he always has a project at home that need tending, I guess that’s just comes with buying and old house It’s nice when we can have an evening that he can take a break and just be with Ford and I. We can actually have a conversation that allows us to regroup a little. Life can be so busy and hectic which is especially true in an SMA family. I could never tell Scott how much Ford and I love him and how much we are so blessed that he is ours forever!!!
Now to my other true love, Ford. You are the most precious child to exist on this Earth. You have taught me what it really mean to love my whole heart. I am so blessed to be your Mommy and I hope that you will let me snuggle you up for many years to come. I can’t believe the young boy you are growing into and I am so proud of what you show the world each and every day. I love you my sweet baby. Now I am going to show everyone the embarrassing Valentine picture Mommy and Grandma took of you half naked.
Happy Valentine’s Day!!!!!!!!
Christmas has come and gone and it was so great to see family. We had a busy week the week of Christmas with celebrating three days in a row. Ford did great and I know he enjoyed seeing all his aunts and uncles. On Christmas eve Scott’s side of the family came over to celebrate with us. Then Christmas morning we spent with Scott’s mom and then the day after Christmas we celebrated with my side of the family. I love spending time with our family and we made sure to take a lot of pictures. Ford also got to spend some time with his Aunt Meghan yesterday as she came home late for Christmas. Ford got some amazing gifts. It always surprises me at how good our families are at buying Ford toys and gifts that he can actually enjoy.
We also got to be a part of a very special event at my father’s church on Christmas Eve. I miss attending church so much, its just not the same experience watching it on TV. It’s just not something we are comfortable doing with Ford. The Preston family from my parent’s church approached us about participating in the advent reading during the Christmas eve service via power point. They sent the reading and we video taped it in front of our Christmas tree and then sent it to Sandy. It took us a couple recording to get one that didn’t include Moose walking through the screen or Scott and myself laughing from Ford being so vocal. We got it finished though and it was a huge surprise for my parents on Christmas eve .
I am very thankful again and I say it every year but I mean it….Thankful that God allowed us to spend another Christmas with Ford. Thankful that he allowed us to make more memories and share more life together.
Christmas was great but since Christmas Ford has been having some pretty rough days. He has been waking up all hours of the night, crying which he never does and needing his bipap. Ford usually only wears his bipap when he is sleeping to help him get the rest that he needs. At first we thought he might be fighting something so we wanted to stay ahead of things and started doing extra treatments. Symptoms with our kids can change so fast and for me that is very scary. We have not dealt with any type of illness since Ford was 5 months old. He never ran a fever or had any symptoms of a cold but he was unable to keep with saturation levels up without the use of his bipap. We stopped doing the extra treatments because his lungs remained clear and to be honest I think we were probably tiring him out. We also did a sputum culture to test for bacteria growth and we received those results back on Friday which were negative. Ford is still using his bipap almost continuously daily. There are times throughout he day that he can tolerate being off his bipap but he seems to want it anyways. It has become his safety blanket and I think it is just going to be a slow process for him to trust being off his bipap.
Please continue to pray for Ford and for our family. The reality of SMA is so hard sometimes and to be honest makes for a very stressful household. Emotions seem to run wild and frustration can come easy. Pray for Ford’s strength, that he can get the rest at night that he needs and that Scott and I can work together to tackle any obstacle SMA throws in our path.
I trust everyone had an amazing new year and chooses to work on themselves. I am going to try and focus on just being happy. Some days that is hard for me but I have so much to be thankful for and I am truly blessed to be Ford’s Mommy. I hope to strengthen my walk with God and trust with no doubts in his will and plans for our family.
I love taking pictures of Ford. Photography has always been a hobby and I love capturing moments so that I can cherish the memory of that picture forever. I have been taking pictures of Ford since the day he was born. Some are hard to look at as pictures serve as a timeline in our lives and in Ford’s life it shows us over the years the strength that SMA has taken away from him. But Ford’s pictures also remind us of incredible memories and experiences we have been able to have with Ford. This past week I took some of Ford’s Christmas pictures. Here they are to share with the world.
Seeing Ford go to preschool was at one point a dream that seem unattainable in Ford’s life. When the doctors told us Ford most likely would not live to see his first birthday and most certainly not his second we just never thought we would see him in Preschool. It has been a dream come true, at least in this Mommy’s eyes.
Right now Ford has a Preschool teacher who comes to the home once a week and then he sits in on his class’ circle time once a week. We are using Facetime on Ford’s Ipad in order for him to sit in on circle via the internet. It took a good bit of time to get everything straighten out but things seems to be going good, just loss of connection every now and then. Ford really seems to enjoy preschool and is actually doing much better than I thought he would. He is not a habit to change and can be extremely stubborn but he really likes school so after the first of the year we are going to move up to 2 days a week with Facetime. So he will technically be having preschool 3 times a week.
Miss Kim Ford’s homebound teacher
His teacher at school, Miss Anne seems incredible and willing to have Ford involved in every aspect. She created a spot for Ford in the classroom with one of his shirts and then the Ipad connects to the structure. They then sit Ford in the actual circle during circle time and also move him around the classroom if need be. During circle time Ford is learning about the calendar, so days of weeks, months, holidays, numbers and his class also does a pattern on their calendar as well. He also is learning about the weather with the weather Frog. Miss Anne is giving Ford all the same calendar numbers and patterns that his class uses so we can be doing calendar with him at home and he can learn the pattern even when he is not with his class via Facetime. She is also giving us all the parts of the weather frog so we can take pictures and put the weather frog on his Tobii (which is his communication device) and Ford can dress the frog along with his class at home.
Today was a Facetime day and we did circle time for nearly an hour which is longer than normal. Ford participated in morning welcome song “Where is….(insert child’s name) then Calendar and the weather frog. He also learned 3 shapes, circle, triangle and square and then they class read “Brown Bear Brown Bear”. It is incredible to watch Ford really look and see everything that is going on around him. He listens and tries to talk back when he is spoken too.
Miss Anne doing Calendar
He also seems to have a new best friend in his class, Austin. He says Hi to Ford (He actually calls him Fort) about every 10 seconds. It is so cute to see not only the teacher but the kids excited to have Ford in their class and also to want to include him. This whole journey as a mother makes me so weepy at times and I have to say that I have had my moments of happy, joyful tears in this situation. I thank our Lord for choosing to allow Scott and I to keep Ford. To allow him to have these experiences in life that we just thought were unreachable., I could not be more proud of my little super hero.
We celebrated Thanksgiving this year by Mommy tackling the cooking of her first whole turkey. Our holidays are usually our little family and then we try and Skype with the family we can’t be with on the actual day. I woke up early to make breakfast and then put the turkey in the oven. Daddy and Ford lounged around all morning while Mommy cooked and Grandma helped and then we watched parts of the parade. We usually decorate the Christmas tree and house on thanksgiving but we did that about a couple weeks ago.
This year we let Ford taste different parts of the Thanksgiving dinner which is something he has never experienced. Although he can’t eat anything by mouth he sure can “taste” things and we try to give him different tastes as much as we can. So Mommy, Daddy, Grandma and Ford all ate our meal while watching the annual Dog Show! Ford got to taste turkey with cranberry sauce (another first for mommy to make, thank you Pioneer Woman for your recipe), turkey with gravy and sweet potatoes. He loved all of them.
Ford ended up taking a late nap so he didn’t get to say hi to any of his aunts and uncles at my mom’s house when we Skyped with them but he got to see other family after he woke up. I am so thankful for the technology that we have these days which allows us to “be” with family even if for a moment when we can’t actually be “with” them.
We had a wonderful day and I got a special surprise at my door in the evening. My mother who hosted Thanksgiving at her house drove to my house after her company left to surprise me and go Black Friday shopping. It was a tradition my Mom, sister and I always did (before all the stores actually started opening on thanksgiving day) and we always had so much fun. We would shop all morning, go to Eat n Park for breakfast to fuel up and then continue our shopping. I was excited to see her and we had a great time shopping together, something I have not done with my mom in 3 years. Thanks again mom for the wonderful surprise!!!
Thanksgiving is a time of giving thanks but I have so much to be thankful for and not only on thanksgiving. Here are some of the things I am so thankful for each and every day.
I am thankful for my little super hero Ford. He is the absolute light of my life and my reason for existence on this Earth. I am so blessed that God chose him to be my son. He has taught me so much and continues to teach me new things about love, laughter and joy every day. I am thankful that Ford is still here with us and that he is absolutely thriving. He turned 3 in September which is a feat in itself to be thankful for with SMA lurching in the background every day. We added more therapies to his routine this past year and he is doing wonderful in all of them. He received his communication device and is currently learning how to operate it which is so fun to watch. The greatest and most joyful for me as a mother is that this past year Ford started preschool!! Something I thought Ford would maybe never get to experience he is doing. His teacher comes to the house once a week to work on Colors, Numbers, Letters and other preschool curriculum and then he also uses Face time to sit in with his preschool classroom for circle time. (So he is having class over the computer) It is such a great experience for him and he is absolutely loving it.
I am so thankful for a wonderful husband who works so hard at his job but also so hard around the house to keep everything going. He is always thinking of inventive things that Ford can use or do to help entertain him. He loves to do the guy things with Ford and they definitely have an incredible bond.
I am so thankful for our nursing staff as well. We have two wonderful nurses who care for Ford and truly have his best interest at heart. Having them in the house allows me to have an extra set of hands when caring for Ford and also allows me to keep my house clean. :)
I am also thankful for my Mother in law who lives with us and helps on a daily basis whenever we need an extra person. Thank you for loving Ford so much and for all the running around you do for me I am thankful for all of our other family who may not live near but still help us whenever they can as we are so grateful.
I hope that everyone had a wonderful Thanksgiving and created some amazing memories with their family or friends.
I love Halloween and I love dressing Ford up. It’s just one of my things. I love taking pictures of him. I have taken all his Halloween, Fall, Christmas, Birthday and Easter pictures since he was born. I just love capturing the memory with my little man. Halloween has become a favorite as we try and come up with a creative way for Ford to be apart of the Halloween costume tradition.
SMA parents have this creative edge and Halloween is no exception in the creativity department. Every year I can’t wait to see all the costumes that all of Ford’s friends sport for the fun holiday. Most of our kids are bound to a wheelchair so we all think outside the box a little to make our kids feel special. Every year the costumes are just absolutely amazing.
I know some of you are not on Facebook so I wanted to share with you some pictures of Ford’s friends who allowed me to show their Halloween costumes. I hope you are as amazed as I am.
The past couple years we have tried to come up with creative ways to do Ford’s Halloween costume. We had our idea but needed some help. I am a pretty artistic person but I could never make something look lifelike. So a special thanks goes out to Ford’s great aunt who is a an artist by trade who painted us a dragon and a princess in a tower. Ford’s Grandma Bobbi completed the tower with a castle and we were all set.
Here are Ford’s Halloween Pictures for this year. Happy Halloween!!!
Here is a review of Ford’s costumes for the last four years
Ford started preschool a couple weeks ago and we also added Occupational Therapy in a addition to already having Speech Therapy once a week. So we now have two different individuals coming to the home for therapy and also a teacher once a week to do preschool learning with Ford. He will also begin to Skype with a preschool class during circle time. Ford’s bed is in our room which is where he also received his speech therapy weekly. Now that he was going to be started new therapies and also school I wanted to give Ford another room in our home where he could be productive so we picked the dining room.
So we have a dining room but we never use it so I thought it was a great room to transform into a therapy, play and school room for Ford. I have been working on it for a couple weeks it is finally where I want it. Here is Ford’s new room!!
We plan to spend a lot of time in Ford’s new room this winter!!!