So here we are again, and again, its been WAY TOO LONG since we gave an update via the blog. We have tried to keep our Facebook pages updated, but I think its time to sit down and really write it out. Our last blog was about our trip to the FSMA conference and we have had some major events happen in our lives since then.
When we came home….
We got to work on getting Steele the medical equipment he needed. We haven’t obtained every single piece that we set out to get, but we are so thankful for the equipment we have been able to get our hands on. Steele now has a stander which has drastically increased the amount of time per day he is on his feet. Our goal is a minimum of three hours of weight bearing activity per day. Although the stander is great, we have come to find out that too much of one thing can be bad for Steele. For example, if we just put him in his stander for that period of time he would be weight bearing, but wouldn’t be side-stepping or having to engage the muscles necessary when/if he begins to fall. That being said, we try to divide the time. So, Steele gets time in the stander and time on his feet out of the stander with my assistance.
Another piece of equipment that he uses is the cough assist. In a nutshell, this machine helps us to make sure Steele is using his lungs. When he is well, he uses the machine twice per day and it basically blows air into his lungs so he is fully expanding them. When/ If he gets sick, Steele will use the machine every few hours and it forces a cough. It gives him some aid in coughing so he can get the junk out of his lungs. We also have a suction machine to help in that part of the process. Sickness becomes a danger to Steele when it affects his lungs so we try to be as proactive as we can to avoid sickness, or reduce the affect it has on his body.
We have developed a complete routine that we do each morning with the information we gathered at the conference and in working with our specialists. Each morning Steele starts his day with breakfast, massage, stretching, nebulizer, percussions, and cough assist. The entire “get ready” process takes about an hour and a half to two hours each morning. We have really grown to enjoy this time together. It has become so “routine” that Steele even helps me as much as he can. He will grab his leg and hand it to me when its time to stretch it and he says “here ya go!”. Its amazing to me how he moves so joyfully throughout each day. In so many ways God is using this little boy to teach me.
We had an auction for Steele in July and honestly, I don’t have the words to describe it. SO MANY amazing people stepped in to help our family and WOW! What an amazing event it was. I remember in one of the meetings we were trying to decide how many people we should prepare for. They said if we can just get 150 people in the door we will be ecstatic! I am happy to report that after 300 people came through that door we stopped counting. The entire room was FULL of people that came to support our son. That was an event that will remain in my heart forever. It literally changed our lives. God moved mountains for this event to happen and we are still in awe!
Some more friends got together to arrange a motorcycle ride to benefit Steele in September. The event was called “Wheels For Steele” and it was so much fun. We had about 20 bikes enter the ride. It was a chilly weekend, but that didn’t stop people from showing up! We had such a great time and we were able to raise about $1500 dollars to donate to curesma.org to help another family go to the conference next year.
Update on Steele…
Steele had a great summer and stayed pretty healthy for most of it. We had a major scare in September when Steele had to be admitted into the hospital. He started to get sick on a Monday. He had a slight fever and runny nose so I chalked it up to teething. By Wednesday night he was vomiting so I took him to the doctor on Thursday afternoon. The doctor gave us orders and meds on what to do over night and asked that we return the next morning. The vomiting continued and Friday morning we were admitted into the hospital. I have mentioned before that Steele’s nutrition is very important and a little tricky. He has to eat on a time schedule and should not fast for long periods of time. Well, with the vomiting and lack of appetite he went WAY longer than he should have without food in his body. He definitely paid for it and we learned a valuable lesson the hard way. We now have a plan in case he gets sick like that again. Its hard to learn life’s lessons the hard way, especially when it comes to Steele’s health, but we are thankful that we were able to take something away from that 3 day hospital trip. It took him about a month to fully recover from that sickness. I was so worried about the motor skills he could lose when he was just laying in bed, fighting to feel better. He barely had enough energy to sit up or be awake. That being said, he went several days without having a “normal” day where he was doing therapy or moving around in his chair.
Steele’s motor skills have also changed since the last blog update. On the positive side, as I mentioned, Steele is bearing weight on his feet for much longer periods of time throughout the day with assistance from me or his stander. He is also using his walker with the assistance of his “boots” (his braces) and my help. For the past two weeks he has been able to lift his leg up and bend his knee and hold it there. It is AMAZING to watch him do that! He has GAINED a skill with a diagnosis that says he will only lose throughout his lifetime. Glory to God! On the negative side, Steele has almost totally lost the ability to crawl. It is still a part of our routine, and we work on it daily, but it has become very difficult and requires a lot of assistance. BUT, he hasn’t given up on it and neither have I. We do it every day, and I will help him as long as he will let me!
Steele had a sleep study done in October. The study was to determine his breathing pattern throughout the night and to ensure that he had appropriate oxygen and carbon dioxide levels in his body. Any irregularities could mean that he would need to be on breathing equipment throughout the night. We are happy to report that the study came back and the report was WONDERFUL! They said he woke up often in the night, but I am thinking that could have been from the wires taped to his head, face, nose and body rather than a breathing problem! Again, Glory to God!!
Steele will have some more appointments in Dallas this month. One will be with his pulmonologist to determine if any more tests need to be conducted, and the other will be with Steele’s ENT. Steele has HUGE tonsils and we are trying to determine whether or not it would be beneficial to have them removed. We are praying for wisdom and guidance for us as his parents and also for his doctors as we explore our options.
August is SMA awareness month. This last August was our first time to participate in it. We used each day of that month to spread awareness about SMA and look at the positive side of it. (See my facebook page for those posts) We really stepped back to look for reasons to be thankful. It wasn’t always easy, but WOW, I can tell you it made all the difference. It was so beneficial for me to just meditate on the positive. It can be so easy to see the negative in life, and we believe that if we did that it would have been the quickest way for us to get depressed and it would have no benefit to our family. Just to paint a picture of the difference it made in my life I will tell you that each day from August 1st -31st I wrote down something I was thankful for that day. On September 1st I did not take the time to write down something I was thankful for and that night after we put Steele to bed I had a total meltdown. I remember just sitting on the couch and looking at Beau and the tears just began to fall and didn’t stop. I was so sad and felt so defeated. I have continued to try to find the positive each day. Like I said, its not always easy, but for me it is totally necessary.
We will continue to update the blog (hopefully more often!) but we are also considering creating Steele a facebook page since that seems to be easy for us to keep up with. We will keep you updated about our decision in that area.
Where I am now…
I was able to quit my job in September to stay home with Steele. It is something that I prayed about since the day I learned I was pregnant. I had a great job that I enjoyed, but my heart was to care for Steele. As I sit here and type this out I am reminded of God’s perfect timing. My last day was September 2nd, and Steele began to get sick on the 15th of that month. He was in the hospital the following weekend and was basically stuck in the house for 3 weeks following that. Beau and I didn’t have to worry about taking time off work in order to keep Steele home or juggle him around from house to house or person to person. Don’t get me wrong we have an amazing family that I know would have helped us in every way, but it was so great to just be home with him and not worry about who was going to watch him or how we were going to get him there. So I am still home with him and thankful for every minute of it J
So here we are at the beginning of November and I have such mixed emotions. November is a big month for our family. This month we will celebrate Beau’s 30th birthday. We will celebrate our third wedding anniversary. We will celebrate Thanksgiving with my family in Arizona that we haven’t seen in far too long. AND, we will face the day that marks one year since we first heard the words Spinal Muscular Atrophy. My heart still hearts as I write those words. I would love to tell you that in the past year I have figured SMA out. I would love to tell you that it doesn’t hurt anymore. I would love to tell you that everything is fine. But I can’t. It does hurt. It hurts BAD. It takes. It invades. It strips. What I can tell you is that in the past year I have been broken. I’m a mess. I don’t have it all figured out. I am scared. And I am thankful. This last year has brought me closer to God than I have been in my entire life. I can’t do it on my own, and that’s ok. THANK GOD I can’t do it on my own. I would screw it up! I would make it a bigger mess. But He draws me in and loves me. He has shown me that I don’t have to be perfect or to have it all figured out. I sat in church this last Sunday and just bawled my eyes out because I realize that I don’t deserve it. Each day that He gives me is a gift. Each day that He gives our family is a gift. Every breath Steele takes is a gift, and as if that’s not enough God says here let me help Steele lift his leg! We have had a front row seat to witness miracles, and to see God move in His perfect ways.
Please pray for wisdom and direction when it comes to Steele’s tonsils and whether or not to have them removed. Pray that the doctors would make the best decision for Steele.
Please pray that Steele would stay healthy as we enter into this season of the year. This season last year was very hard on Steele and we are praying that he would stay healthy throughout this fall and winter. We have kept him home for most of his time. We just don’t have peace with getting him out of the house as often with all the sickness that is going around right now. Please pray God would guide our steps and give us peace when we do leave the house.
Please pray for Beau and I as parents and as husband and wife. This last year has been harder on our relationship than any other event or time we have encountered. I am more sure now than I have ever been that I married the exact right man for me, but that doesn’t mean that its always been an easy road. Pray we would continue to support each other in our walk with God, as husband and wife, and as parents.
Please continue to pray for complete healing for Steele. That he would do amazing things in Jesus’ name!!
Thank you all so much for your support, prayers, kindness, and encouragement.
We continue to be STRONG AS STEELE!