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 email@example.com
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”.
Once a year we travel to Wisconsin to see Ford’s SMA specialist Dr. Schroth and her team. This year was a little more unplanned as our original clinic date (time got away from me) was scheduled for September 23rd and this was the earliest appointment available when I called in May. She is a very busy lady and so valuable to Ford’s care. We asked to be put on a wait list for a Friday cancellation as having a Friday appointment is much easier on Scott’s work schedule than a Tuesday appointment. They called and had an opening so we decided to take it since we were coming up on the year mark (almost exaclty) from the last time she saw Ford.
I packed all day and checked and triple checked to make sure we were not forgetting anything. It can be a bit nerve racking traveling with Ford at time because there are things he needs that if we forget we can’t just swing into a Target or Walmart and pick up. Scott got home from work and started packing the van. We realized that the inverter in the van wasn’t working (thank goodness Scott checked) so he had to switch it out for the other one we used to take with on Ford’s stroller to run his cough assist machine The inverter is what allows us to use and charge Ford’s equipment while we are on the road.
Ford was tired when we left which is always the best way to travel with him. If he can sleep a good part of the way I think it is easier on him. Well this time he did not sleep. We drove through the night and Ford did not choose to sleep until 3am and he only slept 4 hours. (There is that time change in there too).
Ford’s appointment was at 3pm and we arrived at the hospital around 2:30. I did a breathing treatment with Ford in the van and then we headed on up. First we saw the respiratory who just basically looked at Ford’s vent and discussed with us some of the changes we had made (per Dr. Schroth’s approval) to his settings. She was excited to play with Ford’s portable cough assist and said they didn’t have any in the hospital. Next we saw the dietitian. We discussed Ford’s diet and again changes we made throughout the year according to his needs. Last year the dietican and Dr. Schroth both thought Ford was too skinny even though he was gaining slowly. Last year in July he weighed 25lbs 3oz and was 38.5 inches tall. This year he weighs 33 lbs 8 oz ans was 42 inches tall. He is a growing boy!!! I didn’t have his labs drawn yet because our appointment got changed so we discussed adjusting his diet according to his weight gain and then received orders from Dr. S to get his labs done and faxed to them when we got home. We tried to have them drawn while there but of course insurance would not approve that. (We are going tomorrow morning and then will make any other adjustments needed). They decided that he did need to gain weight from last year and they feel that he gained enough but no longer wanted him to gain at this pace as it could cause him to have a harder time breathing. She removed 100 calories from Ford’s diet to try and allow him to grow and gain weight again at a slow and steady rate.
These are what lab orders look like for an SMA child.
Finally we saw Dr. Schroth. Ford was pretty cranky for the remainder of his appointment due to hardly sleeping so he wore his bipap for most of the time. Once he had his bipap he was his spunky little self and chatted away. We told her that Ford has had an amazing year and that for the last maybe 4 months has been doing extraordinary. (other than some minor sleepless nights…but that’s with all kids right?) His numbers have been excellent throughout the day and night, he is still only needing bipap while sleeping unless he has had a restless night, and we have finally been able to get him to have consistent natural bowel movements thanks to the assistance and advice of other SMA. The only change she made was to a medication dosage which increase with weight and a minor change to his vent. She thought he would benefit from changing the sensitivity to the trigger on his vent but it seemed to make him breathe a lot quicker while on his vent and not sleep or nap well at all. I talked to Dr. Schroth yesterday and we changed it back to the way it was before. He slept like a baby last night.
The last thing we discussed with Dr. Schroth was setting up an appointment with our local ambulance service in the case of needing to call 911. We have been lucky as we have not experienced that part of SMA but we want to be prepared. We had done this at our old house but since we have moved here I just never followed through with having them meet Ford and introduce them to his equipment. I called them today and I am waiting to hear back from the head EMS to set up a time for them to meet Ford and educate their team on SMA and all of Ford’s equipment. We also discussed how to create a plan to have Ford transferred to Madison WI in the event that he needs to be hospitalized again. He has remained healthy since his hospitalization at 5 months old and to be completely honest I am terrified of him having to go back to Children’s Hospital. Our stay in the PICU was less than stellar and I just can’t imagine him being placed under their care again. I spoke to our insurance today and they told me that the hospital in WI is in network and Ford could be treated there however they would NOT approve a transfer because Pittsburgh is the closest qualified hospital to treat him. However if Pittsburgh was in agreement that they could not fulfill the needs Ford has during an illness the insurance would find it medically necessary to transfer. I am going to contact the head of the PICU of Children’s and talk to them about Ford’s last hospitalization and see if we can come to an agreement. Please be praying for this situation to somehow work itself out in which ever way God finds fit.
Overall we had a wonderful appointment and Ford fell asleep as soon as we got in the van and slept until morning. Until next year we pray that Ford will continue to exceed all expectations and limitations that may be put on his life. He is a fighter and we will continue to fight along side him.
I can’t believe how far behind I am on Ford’s blog. My last post was from Memorial Day!!!! I apologize as it seems time has just been getting away from me lately. So this blog won’t be about anything in particular but more of a recap of what Ford has done so far through the summer and any updates on his adventure in this life.
We started summer out with taking Ford to an outdoor greenhouse to help Mommy pick out flowers and also pick out his own for the garden box Daddy built him. I think he was pretty memorized by all the colors to choose from at the greenhouse.
Once we had our flowers picked out Ford’s helped Mommy plant one side of his garden. This summer we did half a flower garden and half an herb garden. “Oh and Mommy has been catching butterflies for me. I think they are so cool. ”
Look how much my flowers have grown!!!
We ended up making a trip to my parents house while we were at our camp because they don’t live that far away. We decided that we would spend Father’s Day with Grandpa and Uncle Ryan so we headed up for the afternoon. It was such a nice day and we just hung out under a big tree in my parent’s yard, grilled some food and just enjoyed good company. We of course also brought presents!!!
We have also been doing a lot of bird watching. Ford loves to keep his bird feeder full so that we can sit on the porch and watch all the birds come get food. We have quite a few different birds that come our way.
We had a wonderful relaxing 4th of July. We hung around the house and walked through the yard. Ford helped Mommy grill the burgers and we had a picnic outside. During Ford’s bipap break we watched Back the the Future…(a first for mommy) then we went for a drive to get ice cream. Our town wasn’t doing fireworks until Sunday so of course daddy did a firework show in the yard. After the fireworks Ford had his very first s’more. We made them on the grill
Ford has also been helping with the garden. Daddy made Grandma and Mommy a beautiful spot to have our garden this year. Ford likes to help pick the basil and the vegetables
It has been quite a long time since we have ventured out of the house for an overnight stay somewhere. Ford pretty much stays in the house through the winter months except for a couple drives to see Christmas lights. Then the weather stayed cold for so many weeks. Scott’s work schedule is about to get crazy and we have been trying to escape the house and make it up to our camp for about a month. Every weekend gave a forecast of rain and the one weekend that looked nice Scott’s work booked a job and he was gone. Finally last weekend the weather looked beautiful and it was going to be a 4 day weekend which was a plus.
Scott worked half a day and I packed everything we could possibly need for the next four days. You think it is hard to pack for a vacation, try packing for just a weekend for a child with SMA. There is so much to think about, every scenario that could happen and how to be properly prepared is a task in itself. I packed what I could the night before (cloths, blankets, etc) and then packed the remainder in the morning while Ford was working with his teacher Miss Kim. We were all set and Daddy packed up the van and our car.
This is about half of what we packed
We arrived at camp and Scott unloaded and got all of Ford’s equipment settled in its place. I love that it stays light out so much longer so we were still able to take a little walk around camp. Ford didn’t take a nap so he ended up falling asleep pretty early. Scott and Ford’s grandma watched a movie while I embedded myself in my book Divergent. I was excited to hopefully have so real time to just relax and get some reading in this weekend.
The following day Ford must have been excited to start exploring camp again that he woke up at 4am. I laid in bed with him and tried to explain that we were on vacation and we should all sleep in We all got up after Ford’s morning treatment and cooked some breakfast. We started our exploring early and just as we were about to start our walk Ford falls asleep. Little stinker, but it’s what happens when he wakes up so early. We did end up getting a short walk in after nap time before it started to rain. It rained on and off the rest of the day but it was still beautiful. During a break in the rain we sat on the porch and lit some sparklers. That night we also ordered pizza which Ford LOVES to taste.
The next morning we ventured out for a walk in the morning before the humidity got too much and wondered into the woods a little. The bugs were awful but we had Ford loaded up with bug repellent. Ford talked the whole time we wheeled him around camp. He loves looking at every possible thing his eyes can catch.
After Ford’s short nap we were doing something very exciting. Ford’s grandma and papa live pretty close to camp so we decided to go to Grandma’s house for a visit. Uncle Ryan came up to visit with us too!! Grandma of course made a crazy amount of food but we enjoyed a picnic in the yard. My parent’s house has a huge back yard so we wheeled Ford through the yard and Ford checked out all of Grandma’s bird feeders. We parked Ford’s stroller in the shade and grandma gave him an ice cream sandwich. Ford also got the hang out with grandma’s dog Gigi. He loves Gigi because she is so small she can fit right under his arm and cuddle. Ford can’t cuddle with out dog Moose
On our last day of camp we spent the morning walking around camp again as it was a beautiful morning. The weather was just too nice to stay in doors especially because we were going to be in the van for a couple hours on the way home. After lunch Daddy packed the car while Ford played his Ipad and then we were off to visit Grandpa Dennis. His grave site is near camp so we don’t ever leave without spending some time with him too. Grandma planted some beautiful flowers too.
All in all it was a great weekend with much relaxation and exploring. We loved visiting grandma’s house and hope to make another trip soon!! I also finally got to meet my nephew Levi which touched my heart so much. I am hoping for a cool enough summer to be able to take Ford on some great adventures these next couple of months!!!
Hope everyone had a wonderful Memorial Day weekend and remembered all those who served our country and have fought or are fighting for the many freedoms we have in this country.
Every year I have written a blog post on Ford’s D-Day (diagnosis day) to just reflect on how the past year has been. Every year as the day came up I used to remember traveling to Philly praying the whole day that this doctor was going to see something in Ford that could allow him to tell us, NO your son does NOT have SMA, but that didn’t happen. Every year I think I would think about how our life would be different if Ford was healthy, it would be so different.
However, this year Ford’s D-Day came and went (Feb 3rd) and I didn’t even think about it. I think in some odd way I have just decided to stop focusing on the past. Why do I make myself sad on the day, Ford is still here. He is beating the odds. He is living, so why try and remember what it felt like to hear those devastating words. Why would I not focus on how Ford is doing now? I can’t go back and change the past, I can’t take Ford’s SMA away, even though I wish every day I could trade places with him, but I can’t.
What I can do is focus on the positive, focus on the present, focus on the fact that Ford is still here. Some families aren’t as lucky as they have had to give their children back too soon. I still get to kiss Ford goodnight, I still get to snuggle him in his bed, I still get to sing in his little ear. I still get to see my child every day. So here we are living our lives day to day and that is all I can ask. We will not look back, we will embrace this life, a life at one point I certainly did not think I was strong enough to handle but Ford is my strength.
Here is to living for the future and never looking back.
We hope that everyone had a wonderful Valentine’s Day yesterday. We spent our night hanging out at home cherishing each other and snuggling. I just love climbing up into Ford’s bed ( I actually do have to almost climb since we got him a raised bed) and snuggling him up! Best feeling in the whole world.
Did you tell those close to you that you love them and appreciate them?
I appreciate my husband so much. He is such a hard worker and he never seems to stop working. When he comes home from work he always has a project at home that need tending, I guess that’s just comes with buying and old house It’s nice when we can have an evening that he can take a break and just be with Ford and I. We can actually have a conversation that allows us to regroup a little. Life can be so busy and hectic which is especially true in an SMA family. I could never tell Scott how much Ford and I love him and how much we are so blessed that he is ours forever!!!
Now to my other true love, Ford. You are the most precious child to exist on this Earth. You have taught me what it really mean to love my whole heart. I am so blessed to be your Mommy and I hope that you will let me snuggle you up for many years to come. I can’t believe the young boy you are growing into and I am so proud of what you show the world each and every day. I love you my sweet baby. Now I am going to show everyone the embarrassing Valentine picture Mommy and Grandma took of you half naked.
Happy Valentine’s Day!!!!!!!!
Christmas has come and gone and it was so great to see family. We had a busy week the week of Christmas with celebrating three days in a row. Ford did great and I know he enjoyed seeing all his aunts and uncles. On Christmas eve Scott’s side of the family came over to celebrate with us. Then Christmas morning we spent with Scott’s mom and then the day after Christmas we celebrated with my side of the family. I love spending time with our family and we made sure to take a lot of pictures. Ford also got to spend some time with his Aunt Meghan yesterday as she came home late for Christmas. Ford got some amazing gifts. It always surprises me at how good our families are at buying Ford toys and gifts that he can actually enjoy.
We also got to be a part of a very special event at my father’s church on Christmas Eve. I miss attending church so much, its just not the same experience watching it on TV. It’s just not something we are comfortable doing with Ford. The Preston family from my parent’s church approached us about participating in the advent reading during the Christmas eve service via power point. They sent the reading and we video taped it in front of our Christmas tree and then sent it to Sandy. It took us a couple recording to get one that didn’t include Moose walking through the screen or Scott and myself laughing from Ford being so vocal. We got it finished though and it was a huge surprise for my parents on Christmas eve .
I am very thankful again and I say it every year but I mean it….Thankful that God allowed us to spend another Christmas with Ford. Thankful that he allowed us to make more memories and share more life together.
Christmas was great but since Christmas Ford has been having some pretty rough days. He has been waking up all hours of the night, crying which he never does and needing his bipap. Ford usually only wears his bipap when he is sleeping to help him get the rest that he needs. At first we thought he might be fighting something so we wanted to stay ahead of things and started doing extra treatments. Symptoms with our kids can change so fast and for me that is very scary. We have not dealt with any type of illness since Ford was 5 months old. He never ran a fever or had any symptoms of a cold but he was unable to keep with saturation levels up without the use of his bipap. We stopped doing the extra treatments because his lungs remained clear and to be honest I think we were probably tiring him out. We also did a sputum culture to test for bacteria growth and we received those results back on Friday which were negative. Ford is still using his bipap almost continuously daily. There are times throughout he day that he can tolerate being off his bipap but he seems to want it anyways. It has become his safety blanket and I think it is just going to be a slow process for him to trust being off his bipap.
Please continue to pray for Ford and for our family. The reality of SMA is so hard sometimes and to be honest makes for a very stressful household. Emotions seem to run wild and frustration can come easy. Pray for Ford’s strength, that he can get the rest at night that he needs and that Scott and I can work together to tackle any obstacle SMA throws in our path.
I trust everyone had an amazing new year and chooses to work on themselves. I am going to try and focus on just being happy. Some days that is hard for me but I have so much to be thankful for and I am truly blessed to be Ford’s Mommy. I hope to strengthen my walk with God and trust with no doubts in his will and plans for our family.
I love taking pictures of Ford. Photography has always been a hobby and I love capturing moments so that I can cherish the memory of that picture forever. I have been taking pictures of Ford since the day he was born. Some are hard to look at as pictures serve as a timeline in our lives and in Ford’s life it shows us over the years the strength that SMA has taken away from him. But Ford’s pictures also remind us of incredible memories and experiences we have been able to have with Ford. This past week I took some of Ford’s Christmas pictures. Here they are to share with the world.
Seeing Ford go to preschool was at one point a dream that seem unattainable in Ford’s life. When the doctors told us Ford most likely would not live to see his first birthday and most certainly not his second we just never thought we would see him in Preschool. It has been a dream come true, at least in this Mommy’s eyes.
Right now Ford has a Preschool teacher who comes to the home once a week and then he sits in on his class’ circle time once a week. We are using Facetime on Ford’s Ipad in order for him to sit in on circle via the internet. It took a good bit of time to get everything straighten out but things seems to be going good, just loss of connection every now and then. Ford really seems to enjoy preschool and is actually doing much better than I thought he would. He is not a habit to change and can be extremely stubborn but he really likes school so after the first of the year we are going to move up to 2 days a week with Facetime. So he will technically be having preschool 3 times a week.
Miss Kim Ford’s homebound teacher
His teacher at school, Miss Anne seems incredible and willing to have Ford involved in every aspect. She created a spot for Ford in the classroom with one of his shirts and then the Ipad connects to the structure. They then sit Ford in the actual circle during circle time and also move him around the classroom if need be. During circle time Ford is learning about the calendar, so days of weeks, months, holidays, numbers and his class also does a pattern on their calendar as well. He also is learning about the weather with the weather Frog. Miss Anne is giving Ford all the same calendar numbers and patterns that his class uses so we can be doing calendar with him at home and he can learn the pattern even when he is not with his class via Facetime. She is also giving us all the parts of the weather frog so we can take pictures and put the weather frog on his Tobii (which is his communication device) and Ford can dress the frog along with his class at home.
Today was a Facetime day and we did circle time for nearly an hour which is longer than normal. Ford participated in morning welcome song “Where is….(insert child’s name) then Calendar and the weather frog. He also learned 3 shapes, circle, triangle and square and then they class read “Brown Bear Brown Bear”. It is incredible to watch Ford really look and see everything that is going on around him. He listens and tries to talk back when he is spoken too.
Miss Anne doing Calendar
He also seems to have a new best friend in his class, Austin. He says Hi to Ford (He actually calls him Fort) about every 10 seconds. It is so cute to see not only the teacher but the kids excited to have Ford in their class and also to want to include him. This whole journey as a mother makes me so weepy at times and I have to say that I have had my moments of happy, joyful tears in this situation. I thank our Lord for choosing to allow Scott and I to keep Ford. To allow him to have these experiences in life that we just thought were unreachable., I could not be more proud of my little super hero.
We celebrated Thanksgiving this year by Mommy tackling the cooking of her first whole turkey. Our holidays are usually our little family and then we try and Skype with the family we can’t be with on the actual day. I woke up early to make breakfast and then put the turkey in the oven. Daddy and Ford lounged around all morning while Mommy cooked and Grandma helped and then we watched parts of the parade. We usually decorate the Christmas tree and house on thanksgiving but we did that about a couple weeks ago.
This year we let Ford taste different parts of the Thanksgiving dinner which is something he has never experienced. Although he can’t eat anything by mouth he sure can “taste” things and we try to give him different tastes as much as we can. So Mommy, Daddy, Grandma and Ford all ate our meal while watching the annual Dog Show! Ford got to taste turkey with cranberry sauce (another first for mommy to make, thank you Pioneer Woman for your recipe), turkey with gravy and sweet potatoes. He loved all of them.
Ford ended up taking a late nap so he didn’t get to say hi to any of his aunts and uncles at my mom’s house when we Skyped with them but he got to see other family after he woke up. I am so thankful for the technology that we have these days which allows us to “be” with family even if for a moment when we can’t actually be “with” them.
We had a wonderful day and I got a special surprise at my door in the evening. My mother who hosted Thanksgiving at her house drove to my house after her company left to surprise me and go Black Friday shopping. It was a tradition my Mom, sister and I always did (before all the stores actually started opening on thanksgiving day) and we always had so much fun. We would shop all morning, go to Eat n Park for breakfast to fuel up and then continue our shopping. I was excited to see her and we had a great time shopping together, something I have not done with my mom in 3 years. Thanks again mom for the wonderful surprise!!!
Thanksgiving is a time of giving thanks but I have so much to be thankful for and not only on thanksgiving. Here are some of the things I am so thankful for each and every day.
I am thankful for my little super hero Ford. He is the absolute light of my life and my reason for existence on this Earth. I am so blessed that God chose him to be my son. He has taught me so much and continues to teach me new things about love, laughter and joy every day. I am thankful that Ford is still here with us and that he is absolutely thriving. He turned 3 in September which is a feat in itself to be thankful for with SMA lurching in the background every day. We added more therapies to his routine this past year and he is doing wonderful in all of them. He received his communication device and is currently learning how to operate it which is so fun to watch. The greatest and most joyful for me as a mother is that this past year Ford started preschool!! Something I thought Ford would maybe never get to experience he is doing. His teacher comes to the house once a week to work on Colors, Numbers, Letters and other preschool curriculum and then he also uses Face time to sit in with his preschool classroom for circle time. (So he is having class over the computer) It is such a great experience for him and he is absolutely loving it.
I am so thankful for a wonderful husband who works so hard at his job but also so hard around the house to keep everything going. He is always thinking of inventive things that Ford can use or do to help entertain him. He loves to do the guy things with Ford and they definitely have an incredible bond.
I am so thankful for our nursing staff as well. We have two wonderful nurses who care for Ford and truly have his best interest at heart. Having them in the house allows me to have an extra set of hands when caring for Ford and also allows me to keep my house clean. :)
I am also thankful for my Mother in law who lives with us and helps on a daily basis whenever we need an extra person. Thank you for loving Ford so much and for all the running around you do for me I am thankful for all of our other family who may not live near but still help us whenever they can as we are so grateful.
I hope that everyone had a wonderful Thanksgiving and created some amazing memories with their family or friends.