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 first want to thank everyone who prayed for Ford yesterday and today as he had to go get his labs drawn. This is something we must do every 6 months to ensure that Ford’s specialty diet is correct. The labs let us know if we need to make any adjustments to his diet and allows us to know he is receiving all the nutrients and supplements he needs to grow. I hate getting his labs down because simply I hate seeing Ford in any kind of pain. I hate seeing him uncomfortable and crying. I can usually calm him down pretty fast but I just hate to think that he looks at me with his eyes wondering why I am putting him through this.
Our last two blood draws have not been successful. At least not in my book. We got the blood we needed the first time but then the lab ran the wrong tests so we had to redo the draw a week later. About a month ago we got his labs drawn again and it did not go well at all. We got his vein but were unable to get his blood to flow. We ended up having to settle for a heel stick which was very uncomfortable to Ford and then we were unable to get all the labs from the blood they got. I did not want to risk going to the hospital during out lockdown phase so I decided to wait until RSV season was behind us and then we would make the trip.
We woke up early and did his treatment right away to try and get out the door. I gave Ford some extra water so we would be well hydrated. I had been giving him extra flushes all day yesterday to try and ensure this as well. I also had heat pads on his wrists to try and bring his veins out. We loaded up and were on our way by 730am.
We arrived at Children’s North Hospital at 8am (the lady told us if we got there by 8 we would be first but that was not the case). We ended up having to wait 45 minutes to go back but they were extremely accommodating and allows us to use the side entrance to enter and leave. I was happy about that because we don’t like waiting in waiting rooms. The lady was very nice and other than needing to be reminded that she needed to be gentle with Ford’s little arm I think she did a good job. She got his vein on the first stick and with Mommy squeezing Ford’s other hand he didn’t even cry. Four tubes of blood down and we were on our way. He has a bruise and some popped blood vessels but he did such a great job. He is just so brave and amazes me with his resilience.
Since Ford was so brave we stopped at the store. Mommy ran in and got him a tractor balloon, a watering can, bubbles, 3 Avenger action figure (Thor, Iron Man and Captain America) and also his favorite blue raspberry twizzlers. He loved them!!!
I am hoping that all his blood draws from here on out go just as smooth and tearless. Thank you again for your prayers. Our God is so good!
Awhile back we decided to make a list of fun things we would this Spring/Summer with Ford. I am always trying to keep him entertained and as you can suspect a 2 1/2 year old boy can be quite a handful. He constantly has to be doing something so I thought if I made a list of fun things to do I would hold myself accountable. One thing on that list was to plant flowers. I love to have flower on my porch in the summer and thought it would be something I would share with Ford. We planted three different kinds of seedlings. I can’t remember which ones as I am not so good with names. I usually go to the store and pick the ones I think look pretty…lol
We put on Ford’s gardening apron, grabbed his Spiderman bucket and shovel and started getting dirty. I think he loved playing in the dirt. What boy doesn’t right?Then we had to put the seeds in the pot. Ford did a good job holding the seeds. He even dropped them in when I told him too.
Happy Planting and Gardening
Before you were born
We dreamed of you, we imagined you, we prayed for you
Now that you are here
We hope for you, we love you, we thank God for you
This quote that I found describes what a Mother’s love for her child is like. I did dream about Ford. What he would look like, what color eyes and hair would he have? I imagined all the fun things I would get to do with him as my son. Scott and I prayed for Ford before he was even born. We prayed that he would know Jesus and that we would teach him about his word.
Since Ford was born and when we got his diagnosis all we had to hold onto was Hope. Hope for a future with him and God has given us that. I pray our future will be long with many memories. I love him more than words could ever describe. And I definitely thank God for my son, for what he has taught me about being a Mommy. I cherish ever second I get to spend with him.
Thank you for choosing me God to be Ford’s Mother!!
So I just wanted to give Ford’s one and only nurse some recognition this week. Its nurses week and we cannot be more grateful for God providing our family with the perfect nurse to meet our needs. Ford loves Nurse Kristen and she cares so much about him. I can see it when I watch her interact with Ford. We are very lucky!!
We wanted to make her shift today a little more special so we decided to make her some homemade chocolate chip cookies. Baking is becoming a favorite activity for Ford as he loves to operate the mixer with his switch. He takes after his Mommy and her love to be in the kitchen. Nurse Kristen and Ford made the batter and Mommy put them in the oven.
We hope that Nurse Kristen knows how much we appreciate her. We try and remind her as much as we can but we really do love her.
HAPPY NURSES WEEEK!!
We had a wonderful, adventurous time last weekend as we went on an animal escapade. I have always wanted to take Ford to the zoo since he absolutely loves animals but thus far it has been something that hasn’t been able to happen due to a level of comfort. I started doing some research and found a drive through safari and thought that this may be the solution in getting Ford to the zoo. The Safari was located in Port Clinton Ohio so it was a little over a 3 hour drive. I started looking up cottages and cabins in the area trying to find a place for us to stay for the night. We aren’t too keen on staying in hotels and I found that there were many houses for rent in Port Clinton as its a bit of a tourist area with Cedar Point in close proximity.
After booking our reservations as a house close to the water I started talking back and forth with the couple who owned the house. They visited Ford’s website and tried to learn a little about him. We told them we were coming to go to the African Safari and they said Ford would love it. They also told u s about another facility that we may have wanted to visit called “Back to the Wild”. I looked into it and the place sounded really cool. I emailed the owner Mona to see if it was at all possible to set up a private tour. She again was so friendly and wanted to accommodate Ford in any way she could. So we had our plans set and we would make it a weekend trip. We would visit the African Safari on Saturday and then Back to the Wild on Sunday.
We left on Friday after Ford’s daddy got home from work and loaded up the van with all of our stuff. You wouldn’t believe the amount of stuff we have to bring when we leave the house. We try to be prepared for any situation that could arise. That means taking back up equipment and back ups for our back up equipment!!! Our trips always seem to be somewhat eventful and this time was no different. A trip that should have taken us about 3 hours took us 6 but once we arrived it was so beautiful. We unpacked and got Ford settled in for the night.
When we woke up and got everything ready and allowed Ford to play in his slings for a little while Daddy packed up what we needed to take with us. At this point we had rescheduled our Back to the Wild appointment to Saturday evening because the forecast was calling for thunderstorms all day Sunday. Saturday was an absolutely beautiful day. We could not have wished for better weather. It was sunny but not too hot which we were happy about because Ford has a little trouble in the heat. Before we left we took Ford down to the dock by our house to show him the water and take some family pictures.
We arrived at the African Safari and got our tag for the van. We were allowed to go through as many times as we wanted which made me excited. I didn’t know if there were going to be animals on one side and not the other and Ford travels laying down with this head to the side. Going through more than once was exactly what we wanted to do so that Ford could see and experience it all.
The first time through was fun and Ford could see the animals but no one of them wanted to take at our window because we weren’t feeding them any food. In the van our back windows were Ford is located are only sliding windows and they have a screen attached. We decided that before our second time through we would cut the screen out of the window so we were able to feed them right in front of Ford. Needless to say Ford loved watching the animals so close. He got see camels, zebras, deer, lamas, buffalo and the biggest steer I have ever seen. He watched so intently as they stood at our window waiting to get some food from our cup. I was in shock at how far in your windows the animals would come to get the food. I know Ford loved it.
When we were done at the Safari we traveled back to the house so Ford could take a nap but I think he was to excited so we settled for some bipap time. Back to the Wild is a non profit facility specializing in wild life rehabilitation. They rehabilitate and release injured, orphaned, and displaced wildlife back to the wild and their normal habitat. The owner of the facility, Mona received Animal Planet’s Hero of the year award in 2006. We were very excited to see what Ford could experience here. Mona walked us through the ground and explained which animals were currently being rehabilitated and which animals would not be able to survive being placed back in the wild. Ford got to see an owl close up as he was glove trained. We were hoping to also see a bald eagle on the glove but he was busy practicing to take flight. Mona allowed us to enter the flight area and Ford got to watch the Eagle practice flying. That was a very cool experience. For also got to see a fox, bobcats, squirrels, hawks, vultures, bunnies, snakes, turtles and many other animals. I am so happy that Ford got to experience both of these adventures. He studied every animal he laid his eyes on.
We had such a wonderful time and I am thankful Mona allowed us to come Saturday as it pour all day Sunday. I can’t wait to see what other adventures our summer hold for us.
One of the fun activities on our Summer Fun Checklist was to make bird feeders. Ford’s Grandma Dee came for an over night sleepover this week and since she is mildly obsessed with birds…(I am just kidding mom). But she really does have a love for birds, I thought this would be a perfect craft for Ford and Grandma to do together.
I have been saving toilet paper rolls specifically for this project and I think we had enough. Mommy spread the peanut butter on the rolls while Grandma and Ford rolled them in the bird seed. Then Grandma tied the string to them so we could hang them in the tree. We cleaned up and went out to the porch. Ford watched Mommy climb a ladder so that I could hang five feeders in our front yard tree and one on our porch. We also mixed some hummingbird food and hung our hummingbird feeder in the tree. We hoping that the birds enjoy the food we provided for them and that Ford will get to do some bird watching with summer. I have a feeling we will see a lot of bird since we already have a nest in our tree.
What are you doing that is fun this Summer?
A new machine came out on the market in November of 2012 and every SMA family was excited about the possibility of this machine being in their home. It is the portable cough assist machine and when we say portable we mean 9 lbs. The current cough assist we have for Ford is about 30-35lbs and if you leave your house it requires two more pieces of equipment in order to operate. You must have what is called a pure sine wave inverter as well as a marine battery to operate the current cough assist we own. This means that anytime we leave our house we must take all three items in order to operate his cough assist. The current cough assist we have and the accessories we need to operate it take up the entire equipment tray under Ford’s stroller. A cough assist machine is vital in Ford’s survival because it is the only piece of equipment that can really save his life in the event of him getting a plug. Having a device that runs on battery in the event of a power outage or just being out of the home is something we wanted to fight for on Ford’s behalf.
With all that being said you can see why this is something we found essential for Ford. In January we started the process of requesting the new cough assist. In February we received a denial letter from Ford’s primary insurance, Highmark and a denial letter from his secondary Medical Assistance insurance, Gateway. Both deemed the machine “not medically necessary” as they found that the current cough assist machine Ford has in the home is functioning and portable. Personally I think their definition of “portable” is different from mine. So began our fight to justify insurance covering the cost of the machine. We appealed both decisions with the help of an amazing Letter of Medical Necessity Ford’s friend Getty’s father wrote. Thank you again Mark Storm!!! I tweaked the letter to meets Ford’s specific needs and we fought through the appeal process. I received phone calls from the insurance companies still wanting more information.
In March we received a letter from Ford’s secondary insurance upholding their decision and denying Ford coverage on the machine. The very next day Highmark called and told me that they were approving the device and that the letter of approval was on its way to our house. I was so ecstatic I started to cry on the phone with the lady from the insurance company. I immediately called the DME company to inform them that we were approved so the machine could be ordered. The DME company told me that they could not order it until they received the letter. I received my copy of the letter the next day and faxed it to the DME company to keep things moving along in a timely fashion.
Finally yesterday the new portable cough assist arrived at our home and we are so excited about it. It seems to work wonderfully on Ford and I can’t wait to use it on our upcoming adventure.
I love to allow Ford to experience as many things as he can within the restraints of our family’s comfort level. I am a little more comfortable with certain things then Ford’s Daddy so I am trying as always to be creative in our fun. We have gone on a few adventures and we have a special adventure planned for Ford this month. I am very excited about it because I know Ford is going to have a wonderful time.
With summer right around the corner I have been trying to think as well as scan the internet and Pinterest to come up with as many fun things that we can do with Ford throughout the summer. Ford’s Daddys’ job is in full effect during the summer months so it limits some things that we could do. I am always wondering if Ford is getting bored drawing or reading books, playing on his Ipad or simply strolling on our porch. So I have created a checklist of activities I would like to do with Ford this summer. His personality has really blossomed over the past couple months. He is talking a lot and trying to form words any way he can. I am excited for summer and hope that we can make many memories.
We spend a lot of time on our porch throughout the summer and Ford loves to take in the scenic view that we get to wake up to every morning living in the country. Some adventures will hopefully be outside our home and others we will enjoy on our porch. Here is what I have planned:
-Fly a kite
-Go for a walk
-Play in the sand
-Draw with sidewalk chalk
-Go to the zoo
-Drink ice Tea
-Plant and water Flowers
-Help Grandma and Mommy Garden
-See the Horses
-Watch the birds
-Go to a drive in movie
-Have a picnic
-Help mommy BBQ
-Watch Fireworks (A Ford Favorite)
-Potato Stamp art
-Make a cereal necklace
-Go for Ice Cream
-Make a tye-dye shirt
-Make a fossil
-Play in the water table
-Watch the sunset
-See a Parade
-Spray bottle painting
-Watch for a rainbow
-Go see the sailboats
We are ready for the nice weather to stay!!! Please let us know if you have any other fun ideas we can add to our list!!!
Ford has been a little off the last couple of days. I am not sure if it is the change in weather or if he may be coming down with something as he has a slight fever today. Days like these scare me a lot and I tend to let my mind wonder…I know I shouldn’t but this is what I have been thinking about.
People often ask me if I could go back….”Do I wish Ford would not have been born with SMA?” Let me tell you that hearing the words Spinal Muscular Atrophy for the first time on Feb. 3, 2011 was absolutely devastating. With that being said, the answer to that question isn’t so black and white as you may think. It’s all about perspective.
Do I wish Ford didn’t have to struggle to breath? Of Course!
Do I wish Ford could hold his head up or even sit up? Of Course!
Do I wish Ford could swallow and not choke on his saliva? Of course!
Do I wish that I didn’t have to rush to put Ford’s bipap on him if he happens to fall asleep because if I don’t his oxygenation level will drop? Of course!
Do I wish Ford could eat food by mouth and not just “taste” it before I have to suction him so he doesn’t choke? Of course!
Do I wish Ford didn’t have to be hooked up to medical machine all day? Of Course!
Do I wish Ford could run and play in our yard or learn how to ride a bike in our drive way? Of Course!
Do I wish Ford could talk? Of Course!
Do I wish Ford could say “I love you Mommy!”? Of Course!
I wish I could just trade places with Ford. I wish I could take any pain, any fears, and any sorrows that he may feel. But do I wish he wouldn’t have been born with SMA? Maybe…maybe just all the bad things and scary things that come along with SMA…..
You see…This is where it’s not so simple to just answer with a big fat YES! Without SMA I would have never found the understanding of unselfish, unconditional love. True Love <3
Ford loves me no matter how many times I mess up. He can’t tell me in words yet but boy I can’t wait for the day that is possible….even if it’s not on this Earth. I know he loves me by the way he looks into my eyes. Not the way he looks AT me but the way he STARES at me as if to say, “It’s ok Mommy”. I know he loves me. He may not be able to physically hug me but he does when he wraps his little fingers around mine and squeezes, really squeezes. I know he loves me by his laugh, his faint little laugh when I give him neck kisses. And I know he loves me by the squeals he makes when I tickle his feet.
You see, if Ford didn’t have SMA, I think I would miss all the small things. The things most of you probably take for granted. These are the things that keep me going every day. So if you were to ask me again if I wish Ford would not have been born with SMA you can understand how the answer is no longer so simple.
My boy has taught me more in his 2 ½ years of living than I can say I have learned in my 28. Please hug and kiss your children a little tighter tonight. Hold on to those I Love Yous!!
Easter this year was very special. First I want to just say that as a family we are so grateful for God who loves us as undeserving as we are. We thank him for dying on that cross for our sins that we may be forgiven. “For God so loved the world that he gave his only Son, that whoever believes in him shall have eternal life” John 3:16 I hope that all who believe were able to shine God’s loves to those around them during the Easter season.
Ford’s first Easter we were in the hospital with RSV. We didn’t know if we were coming home with Ford but God’s strength pulled him through. Last Easter Ford’s grandfather had just passed and it was the first holiday without Grandpa Dennis which was obviously hard in itself. This year I wanted to try and make this holiday great for Ford. We did crafts all week and read the Easter story every day from Ford’s bible.
Ford had a busy Easter weekend. On Friday night Ford colored eggs with Mommy, Daddy and Grandma. He seemed to be having fun and was concentrating on his eggs. This was Ford’s first time to ever color eggs and I saw this idea of using a whisk to hold the egg on Pinterest. We tried it out and this was an excellent way for Ford to color his own eggs. He held onto the handle of the whisk and moved it back and forth.
On Saturday Grandma and Papa visited and brought Ford his Easter basket. Ford had a great time and played games with Papa and read books and drew pictures with Grandma. Ford colored more Easter eggs too. Papa read Ford the Easter story from his bible as we had been doing all week. I want Ford to experience the traditions we had when Scott and I were little but I want him to know the true meaning of Easter. He is young but his spirit is old and I know he understands.
Ford got a special visit from a horse on Saturday too. He was kind enough to come into our yard so Ford could get a closer look. Saturday was a beautiful day so we took the opportunity to take a drive and get ice cream, Ford’s favorite treat!
Then Sunday morning Ford greeted Scott and I with a scream to let us know that he was awake. Its become his signature signal After Ford’s morning treatment we took him around the house looking for Easter eggs. Ford’s first Easter egg hunt. He didn’t like us putting the egg in his hand but he found all the eggs scattered around the house. Ford found his basket hiding under the dining room table too. We then ate breakfast and watched church on TV. Grandma came home from church and we relaxed the rest of the morning and watched a movie. Ford took a nap and when he woke up we took Easter pictures and opened Grandma’s basket. We even got to Skype with family which is always a plus!!