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
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”.
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.