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
Last Saturday (Septmeber 19th) Ford turned 5 years old!!! Five, a whole hand, a number that we were told Ford would never see after he was diagnosed with SMA type 1. As you know if you have followed Ford’s blog, every year we like to have fun with his parties and make his birthday a big deal. Ford and I love taking pictures, silly pictures, dressing up in cute and funny outfits and I mean not just for Halloween. So we make Ford’s birthday parties themed and this year we did a Western Theme. Ford loves to look at the cows and horses on our road as we drive by and sometime there are even people who ride their horses in front of our house. Our families are just so fun and they always dress up and make the day amazing.
My parents let us borrow a backdrop that they used in their churches VBS a couple years ago and it was perfect for the party. This year I tried to be a little more fugal with Ford’s party expenses but still obviously make it a big deal. We were able to borrow a lot of items that were just perfect to make his birthday theme come to life. I took Ford’s birthday pictures a couple weeks before his party and he was just he cutest little cowboy ever.
This years party was so fun and able to be held under Ford’s new MAW project in the back yard. It rained around 6am and I was worried it would rain during the party so we started praying for it to hold off until the late afternoon. We set everything up under the pavilion and we had great weather!!
We didn’t have any entertainment like we did last year (we had a clown come perform) so we just decided to have all the guests do photos in front of the backdrop. Everyone came to the party dressed in their western gear and ready to get their picture with the birthday cowboy!!
We did a menu of Pulled Pork, baked beans, coleslaw and watermelon. Every guest went home with some Gold Nuggets (Homemade Caramel Corm) too. For dessert Ford had his very one cupcake and then all the guest were offered cow cake pops (made by his wonderful teacher, Miss Kim) and then gorgeous sugar cookies made by another SMA Mama’s business called Little Pterodactyl Cookie. (Look her up on Facebook because they were amazing)
We sang Ford Happy Birthday and we ended the party with opening of presents. Ford was the most chatty he has ever been during a party and I know our family loved hearing him just talk up a storm.
All in all it was a great day and a great party. Our family is so precious to us and we love that they make Ford’s celebration of life such a wonderful memory. Here are some extra candid pictures from Ford’s party. I can’t wait until next year!
Ford’s Make a Wish Project
Last July we had finally decided to go ahead and fill out the application for Ford to receive a wish from the Make a Wish Foundation. I was shocked at how fast we received a response from them after I filled out the application. They did the necessary work on their end and then told us that Make a Wish volunteers would be in contact with us soon.
We knew that Ford would love to have a wish that he could enjoy every day so we talked to him about the things that he likes and we came up with a garden in our back yard. Ford loves to be outside and he relishes in the sounds of the birds and surroundings of nature. He likes to watch the birds come to his feeders (we started out with homemade ones) and listen to them sing to each other. He also loves to watch the butterflies and especially his mommy running through the yard to catch them so he can get a closer look. He loves to go to the local flower nurseries and look at all the different kinds of flowers in many colors. There was a new garden nursery that opened up last summer and when we took Ford there to look around he was drawn to the water fountains so we knew that needed to be included.
Checking out the fountains
picking out flowers
homemade bird feeders
We received a call from the volunteers assigned to Ford’s wish and shortly after that we met with the Steve and Connie. They came out to the house with gifts in tow for Ford and we discussed our ideas and what Ford wanted for his wish. Ford is pretty vocal but he does not communicate as most other children and sometimes can be very stubborn when asked to communicate his wants. We as his parents however have learned what Ford enjoys and Connie and Steve knew that this was something Ford wanted and was going to love. They said that they would take our wish request back and would let us know if it was approved. We got a called from our local chapter Make a Wish saying they had never completed a wish like this but they were excited to make this happen for Ford.
We were so excited to start this journey and for Ford’s birthday last year everyone bought him things that could be placed in his garden. We had no idea of how long of a process our journey would be with Make a Wish. Our journey started pretty slow and it seemed like every time we spoke with our worker nothing had been accomplished since the last time we had spoke. I was pretty disappointed as things went on like this for a good couple months and then we were into winter. Since it was cold and the ground was freezing Ford’s wish has to be stalled until Spring came. Ford ended up being hospitalized this past winter and when we got home from the hospital we had been contacted by Make a Wish to see if things were ok with Ford. They ended up assigning us a new worker, her name was Leigh Ann and she was a miracle worker. She started getting the ball rolling and things we finally falling into place.
Facchiano Contracting came out and did the excavation of our back yard to prepare the ground for the concrete. The concrete was donated by Castle Builders Supplies of New Castle which we were so appreciative of them for doing. My hubby, Scott, his friend Ryan and some other friends and family members showed up to help lay the concrete when it was time. The Bridge was built by Always Vinyl located in Youngstown OH. The remainder of the project, all the construction and building of the pavilion and ramp out to the garden was done by our good friend Ryan Good from Good Construction.
The garden is absolutely breath taking and we have spent every day either wheeling in the garden or under the pavilion. I am glad that we decided to do the pavilion as is provides the much needed shade that Ford needs to hang outside. He loves sitting out in his garden reading books, blowing bubbles, watching his birds and most of all his water fountain. We still plan to get him a larger bed swing as Ford has outgrown the one Daddy built him. I know he will love swinging in his garden too.
Here is the final project!!!
I have always known that Ford was given to us by God for bigger things beyond our comprehension. His purpose is above ours and we want to allow him to guide us on this sometimes difficult journey. Having a child is not cheap and having a special needs child is even less cheap…lol!!! We knew that we were getting very close to needing a larger van but to be honest we just did not have the finances to even think about getting something bigger. Our Ford conversion van was amazing and I never thought we would ever need anything bigger, but boy was I wrong!! Ford is bigger, he is taller and he is almost 5 years old. Maybe something in the back of my mind thought we wouldn’t get this far (I don’t like to think those thoughts ever but in the darkest time they creep in) When we load up in the van it is hard to move around all the things that we have to bring with us. We knew Ford needed more room but we had no idea how we were going to make it work.
Then I remembered another SMA family that did something very big and God blessed them beyond what they imagined. I called Erica and I asked for her guidance in helping us create something big that would help us get Ford the van he needed. We talked on the phone and she shared all her secrets and then I prayed about it and decided that this was something we were going to do. I wanted to go even bigger as my mind wondered through idea after idea and I decided that if we raised enough money I wanted to give our current van to another family instead of selling it. I full heartedly believed that God was going to bless Ford and I knew that we needed to pay that blessing forward. I talked to Scott about it and he agreed that giving the van away was a great idea.
So I began talking to Ford about our idea to get him a new van and I reminded him as he is a miracle that miracles are possible. We launched our fundraiser in April called “Help our little man get a big van and Bless another family too”. Our goal was to raise $39,000 in 6 weeks by reaching 1000 people to give a donation of $39. We needed more than $39,000 to purchase the van however we were trusting the Lord would provide. So instead of selling our current van we decided if we reached our goal we wanted to gift Ford’s current van to another SMA family in need. There are always families looking for ways to raise money for a van and a handicapped accessible one at that. Our van already had a wheel chair lift, tie downs and a power inverter installed to run medical equipment so we knew that it would be great to give it to another SMA family.
We were so blessed through this fundraiser and we received checks and money from many people we didn’t know but felt led to bless Ford. We ended up extending our fundraiser by one week because we wanted to finish our efforts with a dinner but the end of our fundraiser landed on Mother’s Day. We ended up finishing our fund raising efforts with a Soup and Sandwich Dinner where we raised $5300 to bring our total to $33,415. We were not too far from our goal and there were still some people and schools who had planned to give after the end date. When the final total was given we had raised $39,938!!!!
I know the Ford is touching lives around the globe and that is the only way that this fundraiser was successful. God placed Ford on people hearts and minds and in turned blessed our family in an incredible way. We got our new Van in June and it is amazing. Scott needed to do a lot outfitting work to it in order for it to be accessible to Ford’s needs This is what the van looked like when we got it. We will share more pictures after Scott has completed the installation of everything Ford needs.
We humbly thank each and every person who helped make this miracle come true by praying with us, sharing our posts, passing out flyers and envelops. Attending our dinner and most importantly giving. God has blessed us so that we may bless another. We couldn’t decide how we wanted to go about giving our van away and then a family was placed on our heart and we prayed about it as we had not connected with this SMA family yet. We were told they have an almost 4 year old daughter named Jazarria who has SMA type 1 just like Ford. They were in need of a van as they were not able to get out together as a family and were having to take Jazzy to her medical appointments via an ambulance service. They have tried in the past to fund raise for a van but we all know that it can become a very long journey. We were blessed to be able to raise the money we needed pretty quick so we wanted to ease the stress of this family and bless them with our old van. That only become possible through all the help we received from so many and we thank you for making that possible. This family was in the running for a van during mobility awareness month but ended up not being picked which I knew as a sign from God that we had made the right choice by picking the Winston family.
Last picture with the van
When I contacted Patina to tell her that we wanted to gift our van to them as we had just done a fundraiser to get a new one she was in complete shock. She shared with me how they have struggled over the past couple years to get a handicap van and this was going to be a huge blessing to their family. This is what she shared with me (she gave me permission to share)
“Jazarria is an SMA type 1 and was diagnosed @ 6 months. By the time she turned 2 we started trying to raise money for a wheelchair accessible van. It has been a struggle because there are no services where we live to take Jazzy to out of state appointments. So we struggled to get her to her appointments in Cincinnati to see the SMA specialist. All of Jazzy’s in state appointments we used the ambulance service because of how much equipment has to be used with batteries and we have no proper way to strap her down. It has always been my desire for us to just go out and about like any other family can. It has been a challenge because of the size of our family. Where we live there are always people scamming so when we decided to do a fundraiser the response we received back was of people attacking us who did not know Jazarria or understand her diagnosis. We were told she did not need a wheelchair accessible van. So I backed off of fundraising because I felt overwhelmed with judgment. I just prayed and asked God to please provide us with this much needed transportation that would enrich Jazarria’s life and put our minds at peace. We had entered into a van contest that we did not win but towards the last week of the contest you contacted me and explained to me how God incredibly blessed you to have a new van through donations and that you wanted to gift us your old van. When I read this I screamed thank you Jesus and begin to cry because it was a prayer answered. We just did not have the money to buy one and I just couldn’t take the slander of being told I was exaggerating about my child’s disease and needs. You blessing us with this van came right on time and was so unexpected yet so needed. It allows me to bring my family together and to get out and enjoy family outings and quality time. It allows us to entertain the idea of out of town trips or vacations something we just continued to believe God for in spite of the obstacles. We are so very grateful that you all allowed God to use you as a vessel in making our little girls life more enjoyable. There are not enough words to express the gratefulness we feel and the amazement of it all.”
Scott met the Winstons to give them the van this past Saturday. We are hoping they will now be able to get out together as a family and enjoy many adventures together. Making memories is so important and we are excited they will now get to give Jazzy so many experiences with her sisters too. Jazzy can get to all of her appointment comfortably now in her very own van and hopefully back to see her specialist in Cincinnati Ohio.
May the Lord continue to bless your family and keep Jazzy healthy. We again are so thankful to all who made this possible. It was not done through us but through a community of believers who believed it could be. Thank you, thank you, thank you!!!!
Be on the lookout for updated pictures of Ford’s new van and many posts on adventures to come this summer!!!
This past Saturday evening our SMA community was completely devastated to learn of the passing of Gwendolyn Strong. I myself was completely heartbroken and I simply just couldn’t hold my composure. I am sure the SMA community was all the same. I cried almost the whole evening and I have never even met Miss G (that’s what a lot of SMA families call Gwendolyn) in person. SMA is such an ugly disease and it rips families apart so unfairly. It takes children from this earth far too soon and leave parents with a whole in their hearts. This loss was a loss not only to the Strong family but to the whole SMA community and to all those who’s lives Gwendolyn and her family have touched over the years.
SMA is ugly, devastating, life shattering, and dark however it has also brought a whole new family into our lives over the past 5 years. Living through the SMA journey can also bring love and support like no other. It’s strange how you can never have met someone yet you feel like you know them, they become family….they are your family….your SMA family. You share stories and pictures and you begin to have a glimpse into the lives of these kids who; just simply stated steal your heart. These families understand this journey and there is an undeniable bond between SMA families. They help you get through the worst and they celebrate your kids’ accomplishments however big or small with joy. So when you find out about another child in your “family” losing their battle your heart breaks a little bit more and they take a piece of it with them.
When we started this journey the GSF was just launching their new slogan “Never Give Up” and I can’t imagine a better family to emulate that attitude. I remember reading their story in the Families of SMA compass, they talked about how they had been so nervous to take Gwendolyn places out of fear and then one day they decided that they needed to allow Gwendolyn to live. This may look different for each family depending on circumstances and the child but they inspire people to live each moment and each day to the fullest. They gave Gwendolyn the lead in her life and she showed everyone that SMA did not define her, she lived beyond the diagnosis of SMA. Victoria and Bill allowed Gwendolyn to chose what she wanted her life to look like and what would make her happy. They shared Gwendolyn with the world and we all fell in love with her. This family along with Gwendolyn truly encompass the “Never Give Up” attitude. I loved reading the GSF blog about all the adventures Gwendolyn experienced in this life. Gwendolyn was a light in the SMA community who lived a fearless life and gave many families the courage to live beyond what some define living with SMA should look like. In every picture Gwendolyn’s mom and dad posted of her you could see the world in her eyes She loved living this life.
The Strong family have been an inspiration and have led this community with courage and bravery. Their commitment to supporting other families though advice and experience has helped enrich the lives of so many on this journey. This family has also been so dedicated in guiding support to many research avenues all the while taking such excellent care of Gwendolyn and it is just beyond amazing.
To say our community is devastated that Gwendolyn is no longer here would be an understatement but I know we do rejoice together knowing that she is now living SMA free. As a community we will grieve together along side Victoria, Bill and Eleanora and remember the light in Gwendolyn’s spirit and the twinkle in her eyes. We will remember her courage and adventurous nature. She has left the community with a legacy that will never be forgotten. Victoria and Bill, we pray that you will feel the arms of our community around you during this time and know that your daughter has touched more lives than you know. Thank you for sharing Gwendolyn with us and I know she will be visiting many of our kids to continue to give them the courage they need through this journey.
I ask that you please continue to keep the Strong family in your thoughts and prayers.
This past weekend we laid my Grandmother Welch (Grandma June) to rest. It was a beautiful service and I am thankful I was able to make the trip to say my final goodbye to her. I wanted to share some of the memories and accounts that were shared for those that may have known my Grams but were not able to make it to her service.
My grandmother was someone that was so special to me and someone that loved and cared for Ford from a far. The last time we were able to visit was over a year ago. We packed Ford, Moose (our dog) and all of Ford’s equipment and took a drive on a beautiful Saturday to spend a couple hours with her. We brought her outside and gave her a photo album with pictures of Ford, a drawing Ford colored her and Fight for Ford bracelets she requested to pass out to all her friends. We took some family pictures which I will forever cherish because they are the last ones I have of her. She got to talk with Ford and meet my mother in law and she loved petting Moose.
The last two weeks of my Grandmother’s life were hard, some days painful as the doctors tried to keep her comfortable. I spoke with my mom daily to get a report as her body was in congestive failure and her lungs began to fill as well. Last Saturday March 21st at the age of 92 she took her last breath surrounded by her daughters, my father and my uncle. She had finally met Jesus at the gates of Heaven and was no longer in pain. I know she couldn’t wait to be back in the arms of her beloved of 50 years my grandpa Bill.
Her service was Friday afternoon and I got to see a lot of familiar faces of both friends and family. You knew how many lives my grandmother touched by the amount of people who came to say their goodbyes and share memories. My grandmother was a beautiful, kindhearted soul that loved the Lord. If she wasn’t teaching bible lessons in Sunday school or VBS, she was singing those hymns. Man did she ever love to sing hymns. At her service many people stood to give an account of ways my grandma touched the lives of those she knew, taught and loved. Children who are now adults sharing how my Grandmother led them to the Lord as a child in her Sunday class. I am so thankful that my Grandmother instilled Christian values in my mother who in turn with my father instilled the same in our family at such a young age.
My siblings, cousins, and I shared memories that we had with my grandma. Most were about her teaching us to sing and play the piano. She read the bible to us and did sword drills (finding bible verses) at the dining room table. We would hang out at her house after school drinking tea and singing songs like “I love you a bushel and a peck”. We shared and laughed about our trips to the mall and the times we didn’t get to actually go because we didn’t make it to the corner in time to catch the bus. We grew up spending our summers at Edinboro camp and my brother and I used take a break from playing to stop in the “old people cabin” where my grandma and her best buddy Stanley both stayed to grab an OJ from her tiny refrigerator. Kids at church called her Grandma June and fought over who got to sit with her in the back of the church. Her and my Aunt Phyllis used to sneak the kids those butterscotch candies. There are so many memories that can be shared by all of us.
When my Grandma was diagnosed with Dementia the family had to move her from her apartment to the assisted living home. There she enjoyed her days by getting her nails and hair done, playing bingo, bowling and whatever other activities the home provided to the patients that lived there. She was always excited to show us her bingo winnings, which usually consisted of costume jewelry, her favorite ring she was still wearing. We visited her as much as we could and she was so excited the first time she met and got to hold Ford. After Ford was diagnosed we were not able to get up to see her as much. I shared at her service many memories but I also shared her love of Ford:
“One thing I know for sure was my Grandmother loved her grandkids, but I think she loved her great grandkids even more. That’s what grandparents are for right, unconditional love. I know that my grandmother will always have a special bond with my son Ford. She sometimes forgot who people were and couldn’t remember names but for some reason she always knew who Ford was. She constantly prayed for Ford, she truly was a paryer warrior and told all her friends about his story.The Earth truly has lost a wonderful woman but Heaven has gained an angel. I know she was ready to meet her Maker and be back in the arms of my Grandpa. I will always miss you grandma until we meet again in the presence of our Savior.”
My brother also shared many memories as did my sister, but my brother shared a theme that I feel must be mentioned so my Grandmother’s legacy may continue to shine. This is what my brother shared after his memories:
You notice a theme with us grandkids. We loved Grams and have many memories of her. However, memories aren’t all that is left behind. Love is left behind. Because, as we loved Grams, so she loved us fiercely back. Grams was a model of Christ-Centered Love. She loved playing the piano because it brought joy. She loved singing Hymns because it worshiped God. She loved her grandkids simply because this is what Grams did: she LOVED. This is Grams legacy here on this earth: True Christ Centered Love. And that is what continues to live on. I see Grams love reflected in Sandy and Dee, her children. They in turn passed it on to their children: the grandkids, Us. We, in turn, hope to pass on this Christ-Centered Love to our children. Grams passed on love because love is what she did here on this earth. That love cannot be measured. It lives on in all that she came in contact with. And I know that she is doing love even better now, in Heaven, where she is loving her Savior.
My father did my Grandmother’s service and did a beautiful job. He is so good with his words and that is one of the reasons he is such a good pastor. He has great ways to get his message across while leaving a lasting memory of what he said. He is most famous for having sermon points that all consist of the same letter. He started his message stating, People live on this Earth to do one of two things, to either impress people or to impact people. My Grandmother was on this Earth to impact people and she did just that. My father shared seven ways my Grandmother impacted the world while she was here:
1. Pupil- my grandmother never earned a teaching degree but she taught hundreds of kids in both Sunday School and Vacation Bible Schools.
2. Piano- My grandmother never earned a music degree but she taught others how to play the piano and her love of music and worship.
3. Partner- My grandmother was not a marriage counseling but she showed the meaning of true love by being married to my grandfather “until death do us part” for 50 years.
4. Pen Pal- My grandmother was not an author but she was always writing letter of encouragement to others and stayed in touch with people all over the country through letters.
5. Perseverance- My grandmother did not have a medical degree but she proved the doctors of medicine wrong by living 25 years longer than they told her she would after suffering a massive stroke.
6. Praying- My grandmother never served as a soldier in our armed forces but she was a mighty prayer warrior in the army of God. You asked her to pray for or about something and she never stopped.
7. Pocket Book- My grandmother never earned an accounting degree and sometimes was not good with her money but she always gave to others before giving to herself.
So as you can see through many testimonies and accounts given that my grandmother truly both impacted and left a lasting, loving impression on this world. She showed Christ centered love to all those around her and I pray that I will in turn pass this love onto Ford. I love you so much Grandma Welch and I miss you like crazy but I know we will meet again!!! I bet the Easter celebration is one amazing experience in Heaven!!!!
Here are some pictures of my Grandmother
Be on the look out for a big fundraiser starting next week!!! We are trusting the Lord that this need will be supplied through the help of a community of friends and family, (Maybe even strangers too)!!!!! May the blessings flow so that we may also bless another family and to God be all the glory!
Make sure you “like” our Fightforford Facebook page to get all the updates
They are Weak but he is Strong
SMA, when I found out Ford had Spinal Muscular Atrophy my world came crashing down. Things Scott and I were told by doctors are words parents should never have to hear.
What do you mean he is not going to live to be 2?
We maybe have a year with him?
He will never sit up,
He will never walk,
He won’t be able to swallow
At times he will have trouble breathing.
As new parents we were told we will have to watch our child, the being we created, fight an unthinkable, unimaginable fight that the doctors say he will eventually lose. I couldn’t believe what I was hearing. All the dreams I had for my little boy slipping away in a very moment. It took me awhile to accept Ford’s diagnosis, I didn’t think I was strong enough to help my precious child through the journey we were about to embark. I was not strong enough to watch my child’s body weaken over time to the point of this disease taking over his entire being and I am still not strong enough.
In Isaiah chapter 40 verses 29-31 it states, “ He gives power to the faint, and to him who has no might he increases strength. Even youths shall fall faint and be weary; and young men shall fall exhausted, but they who wait for the Lord shall renew their strength. They shall mount up with wings like eagles; they shall run and not be weary, they shall walk and not faint.”
You see I only find strength through God, he supplies my body daily so I have the ability to assist Ford in fighting this battle. He gives Ford the strength to fight this fight. It has to be one of the most common statements said to me, “wow you are so strong, I don’t know how you do it”. What a misconception right, how could any parent have the physical strength, I don’t. God renews my strength every day and through his promise he helps me find the joy to keep going in this life. There is so much joy, more than I could ever express in words. When I wake up and walk over to Ford’s bed after hearing him squeal me awake, he reminds me that though his body is weak, he is strong. See this journey isn’t about me; it’s about Ford.
The true question is how does Ford do this every day? How does he have the strength to keep fighting? His spirit, that is what keeps Ford fighting and fighting. His little body may becoming weaker but God has given him a mind and spirit that are so very strong. This disease may take away parts of his physical being but his spirit will forever remain powerful in Jesus. We have watched Ford really fight over these past 3 months through an illness that landed us in the hospital and then finding out he brought home 2 bacterial infections but he continues to fight and continues to succeed in this journey. We have watched his body weaken even more but even so God is doing mighty things. He strengthens Ford’s spirit and makes my spirit want to shine bright.
I am blessed in the promises of our God and I pray that he continues to shine bright in Ford. I ask that Ford continues to touch the lives of others and that through Ford’s spirit others will see the strengthening power of Jesus.
In the middle of December Scott and I had to face a huge fear we have had since Ford’s first and only hospitalization. Ford had to be hospitalized and intubated (have a breathing tube put in) on December 18th.We spent two weeks in the hospital and spent our first Christmas away from home. We had a horrible experience the first time Ford was hospitalized so it was something we have just feared. We feared that if Ford got sick or aspirated and needed to go to the hospital that his weak little body would not survive. We almost lost him 4 times during that first hospital stay and his body has only gotten weaker. SMA has robbed him of more muscle and strength in his fragile body. Not that we didn’t trust God, we did and we do. It has always been more of a fear (at least for me, I can’t speak for Scott) that this is going to be it for us, God is going to ask to take his solider back.
Just to give a little back round info….at 5 months old we scheduled Ford to have his g-tube ( feeding tube) placed because children with SMA lose their swallow quite early. What was supposed to be a 2-3 day recovery turned into an almost 6 week hospital stay. Ford lost a lot of his abilities sooner than SMA could take them due to being in the hospital, intubated and sedated for the majority of his stay. You lose a lot of strength when you just lay in a hospital bed. We were a newly diagnosed family, not connected with the SMA community yet. We didn’t know any better when they weren’t feeding him for a number of hours, trying to extubate Ford while he was still needing oxygen, not having the proper equipment to treat Ford or refusing to keep treatments on time. We thought we were in a place that could care for Ford the way he needed to be cared for. We weren’t!!
I am not at all trying to bash Pittsburgh Children’s Hospital, they are an excellent hospital. However I would not consider them an “SMA treating” hospital. What that means is that the hospital is willing and actively following the protocols that SMA experts, (one being Ford’s doctor we travel to see in WI) have created to give our children the proper care they need to get well and back home. This is why we have feared ever having to go back to Children’s for an extended stay in the PICU. After we connected with the SMA community via Facebook, we learned that things that Children’s hospital did wrong, the things that were detrimental to Ford’s very well being. We knew the basics our first time around, with the help of my sister in law who is a nurse but even with that and the lead of Ford’s (at the time) pulmonologist (who was familiar with SMA) the PICU did their own thing. The doctors decided what they thought was best even if it wasn’t in the best interest of Ford.
I can be scared all I want but I had one choice, I had to buck up and start learning things to help Ford if he ever needed to be hospitalized again. After extended research, calls to doctors and insurance companies, Children’s is Ford’s only option. Insurance will never allow a transfer to another hospital because the insurance company says Children’s is equipped to properly care for Ford. So I spend my days browsing through the SMA family pages on Facebook trying to learn and educated myself to best help Ford. I make books and binders so that Ford’s nurses can review them and learn more about SMA. I make copies and copies of the SMA protocols so that I have them on hand if I need to show doctors. For the last 3 years I have tried to be as prepared as possible so that if Ford gets sick, goes into respiratory distress or we simply have an emergency that leads us to be in the hospital I am educated.
On January 18th our fear came to light when we finally knew that we could no longer tackle Ford’s illness at home. His symptoms started that Monday with an increase of secretions. He was not sleeping well but he wasn’t running a fever at all as we were checking every couple of hours. He didn’t nap on Monday and then he slept horrible that night because his increased secretions were causing him to wake up as he was needing suctioned a lot. Then Tuesday he still had a lot of secretions and again was unable to nap at all which was leaving him pretty weak. He also showed signs at a g-tube infection but he still was not running a fever. Ford’s pediatrician called an antibiotic in for Ford’s g-tube but the pharmacy had to order it so couldn’t start it until the next day. Ford developed a cough on Tuesday night which was something we have never heard Ford do. He sneezes sometimes (mostly in 4s) but we have never actually heard Ford cough. See Ford has an ineffective cough which is why we have to use the cough assist on him to make sure his lungs stay clear. Now we know he “can” cough but it would never be enough to effectively clear any junkies he had in his lungs. He coughed and chocked on his secretions most of the night and Scott and I were doing treatments every 2 hours to try and keep his lungs clear. We also increased his bipap settings to give him more support at he was wearing his bipap continuously. Wednesday I immediately called Ford’s pediatrician and Dr. Schroth (SMA specialist). Dr. Sarknas called us back and wanted to wait until we heard from Dr. Schroth and take her lead. Ford whined most of day and dosed in and out of sleep between treatments. Dr. Schroth called at 9:30pm and we talked for an hour and half. She assessed the situation based off our answers to her questions and what she knows as Ford’s baseline. She thought maybe Ford had gotten Rhinovirus (common cold) so she was starting him on another antibiotic. At this time Ford was already on oxygen and was not getting the adequate sleep he needed. He was becoming so weak.
Dr. Schroth advised us to take him in if we felt like it was more than we could handle at home. When your child has SMA and they get a cold things can get worse really fast. I slept with Ford that night in between his breathing treatments. Thursday morning came and we struggled with taking Ford to the hospital. Questions ran through our head and fear took over our hearts. Ford had finally fallen asleep and rested for about 2 hours, the longest stretch of sleep he had since he started with the cough. While he slept I backed out bags and got Ford’s equipment ready. We were making the decision to take him in when he woke up. I knew he was getting too tired and he needed to be able to rest if he was going to beat this illness. I called Ford’s pediatrician to let her know and she called ahead to the ER so we would not have to wait when we arrived.
We got the ER and there was utter madness everywhere. The waiting room was full and the ER was overflowing with people who had the flu. I instantly wanted to turn around and take Ford right back home. Were we making the right choice? What if Ford catches something else while we are here like he did last time? A million questions and emtions flooded by mind but this hospital stay was much different from our first. It was a journey are hardships but a journey of seeing God bless our family, answer direct requests of prayer and ultimately brought Scott and I closer together. While in the ER they told us we could not go straight back and they didn’t know what we were talking about when Scott told them our doctor called ahead. Then our first answer to prayer was a male nurse who came along and said he would take up right to a room. He met us at the van and helped Scott load Ford’s equipment up. We were met by nurses immediately wanting to get Ford’s vitals and draw blood and take tests. People were grabbing and pulling and I was trying to stay calm and explain to everyone touching Ford to please be gentle, show them where his contractures are located and to please, please glove and mask up before entering Ford’s room. It took 8 tries and 4 nurses to finally get an IV in Ford because he was so dehydrated. We had increased his fluids but he was loosing so much through his secretions. We were told we were going to have to stay in the ER because there were no beds in the PICU. Finally we met with the attending from the PICU and stated that Ford needed a bed in the PICU and we wanted him intubated before we got to the point of an emergency intubation. They took Ford upstairs and after we assisted in moving Ford from the gurney to the hospital bed we were asked to leave the room for the intubation. During that time we met with the fellow on the floor and reviewed Ford’s chest x-ray. She told us it looked at thought Ford had pneumonia and his left lung was collapsed. She also showed us a spot in his lung she assumed was a massive plug that was too deep for just the cough assist to bring up. We then knew that we had made the right decision to bring Ford in and have him intubated. We now knew we needed to trust the Lord to provide the doctors who would be willing to listen to us and follow the proper protocols in order to get Ford healthy and back home.
We were allowed back in the room and we met the anesthesiologist who told us that Ford was a pretty difficult intubation and that 3 of his teeth were knocked out during the procedure. They had him in a horrible position and to be honest he looked awful. They had him highly sedated and his eyes were rolled back in his head. Not a way you ever want to see your child. After we preposition him and made Ford more comfortable we asked if our family could come back to the room so we could all pray over Ford. The first night was pretty sleepless for Scott and I but Ford got some rest, or as much as you can get in the hustle of the hospital. Ford was on 50% o2 and we were doing treatments every 2 hours, then you have blood draws, blood gases, x-rays, meds, alarms beeping, and just the noisiness of the nurses station. They were giving Ford two antibiotics and tamiflu to fight any viruses he may have as well as if he tested positive for the Flu. That night his fever had spikes to 102.9.
The next morning we met nutrition to talk about Ford’s diet and requesting that I make it in Ford’s room. They agreed to give me control over his diet but they were going to make a base mix so that I did not have to use Ford’s supplies from home. We started his diet slowly with just water, pedialyte and his 2 amino acid formulas. They were going to make that mix for me and then allow me to add to his diet daily. This was another answer to pray because a lot of times the hospitals will not allow you to make your child’s food while in the PICU. We also met with the attending and his team to come up with a plan to get Ford better and back home as fast as we could. There was a lot of illnesses in the PICU and things we did not want Ford to catch. We had to wait a couple days for his viral panel to come back in order to see if we were dealing with anything other than the pneumonia. We discussed a plan of attack with the team. We were going to stay on Q2 treatments to try and clear Ford lungs as well as correct the collapse in his left lung. We needed to clear his lungs and then work on lower the amount of oxygen he was on in order to remove the breathing tube. The team was moving pretty fast with lower Ford’s breath rate on his ventilator, we knew it was too fast. When a person is intubated the doctors lower the breath rate on the machine to prove that the patient is going to be able to breathe on their own whenever the time comes to remove the breathing tube. We had only been in the hospital for 2 days and they lowered his rate from 18 to 8 even though we asked them to please follow the guide of Ford’s SMA specialist.We asked for advice from other more experienced SMA families and we discussed the SMA protocols as well as the information we received from other parents with the doctors and our plan was met with some resistances. We didn’t need to prove that Ford could breathe over the vent because when the time would come that Ford would be extubated (breathing tube comes out) he would be going directly onto to bipap at a higher settings. He would still be getting support from his bipap and they route the doctors were going was only going to tire Ford out. The reason we had brought him to the hospital and request he be intubated was for his body to rest and they were not allowing him to do that. The doctor finally agreed to speak with Dr. Schroth. We discussed a new plan of attack and the doctor agreed to increase his rate back up to allow Ford to rest. This was only a short fix though (but to us an answer to prayer) because the doctor told us he still intended to decrease the rate but agreed with us that Ford needed to rest.
We spent the next 3-4 days just keeping up on treatments and monitoring Ford. We had taken him off the sedation medicine and his chest x-rays were looking better every day. Most times when kids are intubated they must be sedated because of the probability they will try and pull the tube out. Ford cannot move so the likelihood of him pulling his tube out is zero so in turn sedation is not needed. Although I am sure having a tube down your throat and in your lungs is not the most comfortable he didn’t show signs of being in pain. If we thought he was uncomfortable at all it was manageable with Tylenol. We were given much more control in helping with Ford’s treatments and the staff did a much better job at getting to Ford on time to do his treatments. We did have a problem with the IV in Ford’s next. They had started a strong antibiotic and about 30 minutes after the meds started I noticed Ford’s next had a huge tennis ball size bump. His vein had blown and the medicine was leaking into his tissue. The nurse immediately removed it but while doing so the medicine burned Ford’s skin. They had plastics come look at the site and they told us it would heal fine. They also had medivac nurse come in to try and find a new IV site on Ford because he is such a hard stick. This nurse got it right away and told us he was used to putting IV’s in while in a moving helicopter so it was no big deal…to us though it was another answer to prayer.
The day after Christmas we finally had a shift change and met a new attending, Dr. Ericka. Let me just say that she was our biggest answer to prayer. Scott and I had been praying daily and asking others to pray that the doctors would put their egos aside and listen to what Dr. Schroth recommended. This doctor did exactly that. A lot of things that SMA families must do to get their child healthy are not the norms and there are protocols that hospitals don’t usually follow. This doctor however was willing to listen. Each day after rounds she came back into the room to discuss the plan for the day and to further discuss protocols we were wanting to follow. She agreed that as Ford’s parents and advocates we knew what we were doing and she agreed to work along side us to get Ford home. She told us that she would try it our way.
We finally has reached the time to where we thought it was time to extubate. Ford had been on room air (needing no oxygen) for days and was off all sedation meds, and had a clear chest xray. We were still dealing with a good amount of secretions however Ford’s baseline of secretions has always been high. We have always been told that the older Ford gets the more he will be able to control them or they would slow down but that has not been the case for him. Some of his secretions were coming from the tube in his throat so we agreed to start making our plan for extubation. The anesthesiologist who intubated Ford wanted the extubation to be done in the OR because he said that if Ford failed and needed to be reintubated he had what was called a critical airway. He was a hard intubation the first time around and they said that his airway was curved. We had to argue this one pretty hard because what he wanted to do was way out of what we felt comfortable with as Ford’s advocates. We understood that Ford is considered a hard intubation however if he failed intubation it was not going to be in a matter of minutes. This doctor wanted to remove the breathing tube and essentially see if Ford would take breaths on his own and then bag him. He wanted to do this for 20 minutes and then put him on a mask from the hospital on a hospital vent for another 20 minutes and then transfer him back to the PICU if all was successful. This plan was crazy because Ford would never be extubated and expected to just breathe on his own without the support of his bipap. IF that happened, yes he would have failed. We spoke with the attending and she agreed that we would talk to the doctor who would be there and the one performing the extubation and go from there. All worked out and there were more direct answers to our prayers. You see we requested that the extubation be done in the PICU bedside with Scott and I present with Mom (me) putting on Ford’s bipap mask and him being placed on his home bipap at higher settings. There was much talk about Ford staying on the vent he was on but on bipap mode after extubation but in the end the Dr. Ericka was a blessing and the anesthesiologist agreed that everything could and would be done how we wanted it too.
December 29th was extubation day. Another huge answer to prayer was the team agreed to allow Ford to be fed. He TPN which is an IV nutrition and they didn’t turn his regular food off until 6am that morning. The last time Ford was hospitalized they didn’t feed him for 12 hours prior to extubation. We planned the extubation at noon but we ended up waiting a little longer on the doctor to make it too the room. Our family was in the waiting room praying and Scott and I prayed over Ford before the procedure. The doctor arrived and she pulled the tube, I placed FOrd’s mask on his face and hooked him to his home bipap. It all happened in about 30 seconds and the doctor said “that was the fastest transition I have ever seen.” See we were so thankful they allowed me to place his bipap mask on because no one in the hospital had ever even seen Ford’s mask before and not that it is hard but I didn’t want the RT to be fumbling around trying to put the mask on him when I could just do it 10 seconds. Everything went as planned and Ford was a trooper the whole day. The first 12-24 hours after extubaiton are crucial because that is when most kids fail and have to re reintubated. Ford once again showed us was strong and a fighter. He tolerated his breathing treatments and his saturation levels were amazing.
Over the next two days Ford showed the doctors his resilience. We weaned him off some of his higher settings and continued to do breathing treatments. He was back on his feeds and tolerating them well too. We spoke with Dr. Ericka about the possiblity of going home within the next day or so and she agreed that since Ford was extubated and doing great on his bipap that there was nothing they were doing in the hospital that we don’t do at home on a normal basis. On New Years Eve we got our discharge papers and we were outta there.
We got home and we were finally able to celebrate our Christmas’ with family. We celebrated as a family on New Years Day and then that weekend with my parents. We are so thankful that this hospital stay was much shorter than the first but still hope to be able to keep Ford healthy and not have a return visit. God truly showed us his blessings and we are so grateful for the many direct answers to prayer while in the hospital. We want to thank everyone who prayed along side us and kept up to date with Ford via his Facebook page.
It has still been a long road since we have been home. Ford is wearing his bipap most of the time during the day but his breaks are getting longer. He has days when he needs his bipap more and he can no longer go on his side without the use of his bipap. He is getting stronger though. He is back in his routine of therapies and school. We are keeping busy this winter and hope to make it through the rest of this season without any more illness.
To God be the glory, for great things he hath done!!!
The month of December was a bit of a crazy month. At the beginning of the month we traveled to Elk County to stay at the Elk Terrace Lodge. Ford is a child who loves his routine so we never travel super far away (except to see his specialist in WI) and we make sure it is somewhere that we can “set up” like we do at home. Traveling with a special needs child means you do not travel light!! We really needed a change of scenery as Daddy’s work schedule had been so busy this year that we were only able to make it up to our camp one time. We usually travel to our church camp 2 hours away and stay at my sister and brother in laws cottage (its a free get away) but we thought is would be nice to do something a little different.
I started researching different places we could go where we could possible rent a cottage or something for the weekend. I asked others on Facebook if anyone knew of any places to too far away. We received a message from a family who gave us a link to the Terrace Lodge. It looked absolutely beautiful and we feel in love. It stated that a lot of people who stayed at the Elk Terrace Lodge were able to see the Elk come right onto the property. We made our reservations and then we were off for a 4 day getaway in our own little log cabin.
We arrived and as it looked in the pictures, it was beautiful. A long cabin on its own gated lane, the privacy we wanted. Ford was pretty impressed with the giant Elk on the wall above the fireplace, well and the fireplace itself.
We had a super relaxing weekend away. We saw a huge heard of Elk on our way through town but didn’t stop because we were trying to get to the house before dark. We had zero reception or internet access so we thought it was best to travel while it was still light. We ventured out to take Ford to see the Elk but they were all gone. I guess the best time to view them is either at dawn or dusk. We only saw one Elk in a pasture (I actually think it might have been someone’s pet). No wildlife came onto the property while we stayed but we still had a great weekend. We even ate and Elk burger!! It was great to be out in God’s country with amazing views and the company of my little family. It was a trip we definitely needed and hope to do again in the future!!