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
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!!
One thing that I love doing is taking Ford’s pictures. I try and take pictures of every Holiday, season, adventure, occasion and milestone Ford has reached in his life. My two favorites are taking his birthday pictures and his Christmas pictures. I think far in advance about the set up and outfit changes. I usually have at least a couple different ideas each year. This year was a blast taking his Christmas pictures and they will be pictures and memories I will cherish forever.
I usually choose to take some pictures of Ford by himself and then I have my mother in law take some family pictures of us. Here are the pictures we did for Christmas 2014
Every year we try and come up with a great idea or concept to do for Ford’s Halloween pictures. Ford cannot stand or sit so we have to be creative and every year we have so much fun constructing a scene. Here are what we have done in past years.
Popeye the Sailor Man
A Gladiator saving the princess
This year we decided on Tarzan swinging through the trees
On September 19th Ford hit a milestone that we were told he would never reach!!!! Ford turned 4 years old. Sometimes it doesn’t even seem real to say it out loud. When Ford was diagnosed with SMA type 1 the doctors told us that at best Ford would live to be a year old. That statistic almost became our reality when Ford contracted RSV at 5 months old. We almost lost him multiple times while he fought that illness but God had other plans for Ford. He gave Ford the strength to fight RSV and make it home. God has since protected him and has allowed him to not only live but the thrive.
We make Ford’s birthday a big deal and love to have a big celebration. Ford his 1st birthday we did a monkey theme, 2nd birthday was Mickey Mouse and last year did a superhero party to celebrate. This year I wanted Ford to be able to pick his own theme for his party. Ford is learning to use a communication device called the Tobii so I asked Ford’s teacher to create some pages so Ford could tell us what he wanted for his party. I picked three themes for him to choose from, a circus party, a surfer party or a barn yard party. He ended up picking the circus party.
So the months and months of planning began!!! I so enjoy planning Ford’s birthday parties and I pray God give us many more to celebrate. I wanted to share some of the many moments captured through pictures of Ford’s celebration!!! We took some birthday pictures that matched the theme as well.
We welcomed our family to the circus for the day complete with hot dogs, corn dogs, nachos, pretzels, cotton candy, caramel corn, popcorn and peanuts. We were even able to provide some entertainment for our guests and Ford by having a clown come. He did an amazing job and Ford absolutely loved it. Here is what the fun looked like. Hope you enjoy
Ford is on a special diet called the Amino Acid diet. His food mixed is made every day and then given to him via g-tube. He receives a combination of two amino acid formulas which are not milk or soy based and lower in fat. He also gets juices, foods, and other supplements and vitamins in his diet too. However having these amino acids in his diet allows him to digest easier and allows him to have much more energy than a high fat diet would.
Since Ford started the AA diet his respiratory health improved as it was easier for him to breathe, he no longer struggled with constipation and we saw a lot more movement from him on a daily basis. He has been on this diet since he was a year old. To maintain the correct nutrition that Ford need we calculate his diet according to his weight and tolerance. We also monitor him by getting labs done every 6 months. I hate getting labs done because, well really who likes getting stuck with a needle but in this situation it is a necessary evil. It allows us to know if Ford is deficient in something and any changes that may need to be made in his diet.
So today was the day we went and got Ford’s labs drawn. We tried to get them drawn in WI last Friday since we were already at the hospital but our insurance would not allow it. We woke up early so that we could get to Children’s North near where we live so we could be one of the first appointments. (Labs are walk ins so if you get their earlier hopefully you an be seen quickly) Mommy drove the van for the first time with Ford in it while his nurse Norma kept him company in the back. We arrived and there was one boy ahead of Ford so I checked him in and then went back to the van to get Ford’s bipap mask on as they were going to allow us to wait in a separate room so Ford did not have to wait in the waiting room. I am grateful for this because there were lots of coughs going on in the waiting room.
(Mommy explaining to me what they are going to do)
We waited about a half hour and then it was Ford’s turn. They just kept us in the room we were waiting in and the nurses came to us. They both kindly wore masks to work over top of Ford which again I appreciated because there is some type of respiratory bug going around. I gave Ford a lot of extra fluid yesterday in hopes that he would not be dehydrated and they could just find a good vein. She did have to search a little bit but found a good vein on the top of his hand. She got it on the first stick and let me tell you; I have one brave little boy. Not even a wince out of him. He just squeezed mommy’s hand and watched Mickey Mouse. I’ll tell you what his courage is far beyond his years!! The nurses were so impressed that Ford did so well and told him how incredibly brave he was.
(Look at all those tubes)
So of course I wanted to make Ford feel extra special since he had to go through that and did so well….a trip to the dollar store we went!!! It was too early in the day for ice cream. “Look at all the fun stuff Mommy got me”.