Monday, June 29, 2015

Cure SMA Conference - Day 2

Day 2

We started our first full day of the conference bright and early. For those that don't know, Steele's morning routine is anything but quick and our first session started at 9. Cure SMA does a great job with the sessions they offer. Actually, they do a great job with every aspect of the conference, but I really have to brag on their children's room. This is the room that the kids get to go hang out in while the parents attend sessions. This room is full of volunteers to watch the kids, every toy you can imagine, games, movies, video games...its wonderful. So wonderful, in fact, that Steele did not shed a single tear when I left! I really didn't know how he would handle it being that he was in a brand new place with brand new people. I shouldn't have been surprised that he was so excited to go play, but I was.

We knew Steele was in good hands and we were excited to attend the conference sessions. A quick bit about SMA- According to,"There are four primary types of SMA:  Type I, II, III, and IV. The "type" depends on the age of onset and the highest physical milestone achieved." Type I is the most severe, then type II, and so on. Steele was diagnosed with SMA type II.

The conference has "general sessions" for everyone to meet together and then they break out into "workshops" that you can choose between depending on your needs or the information you are seeking. Our first workshop was Type II Talk It Out. I love this workshop. This year, two young women with SMA type II and their moms were the "speakers". I put that in quotes because its basically a Q & A session. They give very candid and honest answers and I always love hearing about SMA from the perspective of someone who is living every day with it. I also love hearing from the moms who have done this for far longer than I have. Its definitely encouraging.

 Much like last year, Beau and I went into this conference with a few goals we hoped to achieve. One of those goals was to get as much information as we could about a power chair. As you know, Steele has had his manual chair for about a year and a half now and although he still uses it we have come to a place where we need power. He fatigues if he has to push himself for too long, and if he isn't on a smooth surface he isn't able to push far-if at all. Any situation where Steele has to go "off road" like at a park or something similar, he loses his independence.  Anyway, I sat in that session and listened to several other parent and family questions before I gained the courage to ask the girls what they preferred in a power chair (public speaking isn't really my thing). And wow! I got the best answer and advice!! I was feeling excited when we left the session and ready to dig deeper into getting a power chair when we got home from the conference. More on the power chair in a moment...

The other session I attended that day was about Standing, Walking, and Mobility. Basically we learned about bracing options (which thankfully Steele already has), how much and how long he should he stand if he is able (again, he is right on track with this!), and different equipment options that can help. More information on power chairs was also provided in this workshop! Last year at the conference I remember feeling like we had a laundry list of things we needed to do when we left conference- getting our hands on medical machines, equipment, etc. and this year I felt like we were on track with so much of what we were doing! And for that I am grateful to Cure SMA and the conferences they put on, the SMA support groups we are apart of on facebook, and our PT and ATP!!

So the sessions were over and we had some free time before the research poster session (the researchers come and explain their current projects-very cool!) and the dance party. We picked Steele up and went to look at the power chairs that a few of the vendors had with them. Our ATP came with us to help us and we talked to the reps. Here is where things get interesting. The rep there let Steele take a seat in the power chair to test it out (see Steele's Facebook page for the video). He did a fantastic job!! He knew how to push the joystick to go where he wanted to go, turn, and even back up. The rep there then suggested "Why don't you just take the chair for the night and return it in the morning?" I think my response was, "What, are you serious?" Having a two year old in a power chair Just. Got. Real. When he was "testing out" the power chair he was in a big open room! Now he was going to take this 300 pound machine it out into the masses of people at the conference?! To the dance party?! I would be lying to you if I said I wasn't full of anxiety.

It was time for us to eat dinner before the research poster session and dance party. Getting into the elevator I think Steele ran over Beau's toe and his PT's entire foot! I have to hand it to him, he did great...for a beginner! When we went to dinner it was the first time that Steele could elevate his chair and sit at the same height as everyone else at the table without a high chair. Later, he took the chair to wash his hands. It was the first time I had both of my hands free to help him get the soap and towels rather than hang on to him with one of my arms while balancing him on one of my legs. He was independently (and quickly) mobile! It was great to see his face while he operated that power chair. A moment I won't soon forget.

Our last stop of the day was the dance party. For those that know Steele, need I say more? That kid had a blast and wore myself and his daddy out! He wanted to party all night!  What a fun, and memorable second day we had. We gained very useful information, met some more amazing "family", and witnessed another one of Steele's "firsts". We were filled with JOY.  

A few pictures from day 2
Steele playing at the Dinosaur table in the children's room

Testing out the power chair in the BIG, OPEN room

Sitting at the dinner table in the power chair

Dance Party!!!!

Dancing with Daddy

Cure SMA photo booth

Saturday, June 27, 2015

Cure SMA Conference 2015 - Day 1

Wow! I just had to start this post with that word. "WOW" pretty much describes our week in Kansas City, Missouri perfectly. We had an amazing time with our SMA family. I think it would be best to break up our posts into days 1, 2, and 3 of the conference just to limit the length of each post. There is so much to say about each day. So let's get started!

Day 1
We decided that we would drive to the conference this year, so after a 9 hour trek we were pretty excited to pull into the hotel. When we pulled up we noticed that almost the entire line of vehicles were wheelchair accessible. If there was any doubt that we were in the right place that pretty much eliminated it. The hotel was absolutely beautiful. You walk in and hear the sound of falling water. On the second level of the lobby area was a beautiful waterfall. It didn't take Steele long to spot it, and he wanted to make a beeline right to it. When we went to check in we were informed that due to the heavy traffic of people leaving from the night before and all of the people coming in for the conference our room was not quite ready. At the time it seemed a little frustrating because we happened to arrive right smack in the middle of Steele's nap time and I knew he needed to get his rest in order to enjoy the rest of the evenings activities. Looking back, however, I am thankful for that delay because it led to more networking with other families that were in the hotel for the same reason we were. Steele had a blast meeting other kids in chairs and showing off his fancy tricks (which is mostly spinning in a circle). I will talk more about this later, but the feeling in the room was just positive and upbeat. I came to find out later that it had nothing to do with the hotel, and everything to do with the people that traveled far and wide to be there.

So a couple hours later we got a room and let Steele rest for his big "meet and greet" night. When he woke up we got him ready and went to Fritz's for dinner. Fritz's is a really cute train restaurant. You order your food from a phone at your table and a train that runs on a track around the room delivers your food. For those that don't know a few of Steele's favorite things are Buzz Lightyear, dinosaurs, and trains. He was elated to be eating dinner there.

At the restaurant we met up with Steele's physical therapist and his ATP (assistive technology provider) who also attended the conference. Folks I could go on and on about this. The fact that they took time out of their schedules, and spent their own money to attend this conference so that they could learn more about SMA in order to serve not only Steele but other clients they may currently have or encounter in their future is INCREDIBLE. You don't run across people like that everyday. They always go above and beyond.. and I don't believe that is special treatment we are getting from them.. its for all of their clients. Again, INCREDIBLE. We are so grateful for them.

So with full tummies and excited mindsets we went to the meet and greet and family fun fest. In the middle of the room a track was outlined on the floor. That is where they held the wheel chair race. This is something they do every year. Its where the doctors and researchers that are working hard to find a cure meet up with the people affected with SMA and race. I love this because the researchers get to meet and see the people they are working to help. To me, it makes it more personal. Its not just an experiment with mice in a lab. They are working to change the lives of so many that are affected with this disease that just robs and takes. I appreciate the work they are doing. I pray that their hard work pays off in the form of a treatment or cure soon. As of now, there are no treatments or cures for SMA. This year alone, over 70 people have lost their lives to SMA. Please join me in praying over the researchers who are working tirelessly to find that treatment or cure. And also pray for the families that have lost a loved one already. Its hard. Really hard. But when you can get together with others that are fighting the same fight and link arms and support one another it gives you a renewed sense of strength and hope. Its refreshing. Its motivating.

Around the rest of the room are carnival-type games. Volunteers are at each station and the kids can go play a game and win a prize. Many of the games involve throwing an item at another item-another thing that's high up there on Steele's priority list. So Steele made his rounds at the game stations and we had time to network with other families. Some were families we met at last years conference. Some were people we had only "met" via facebook support groups, but they all felt like family. It was a great start to our second SMA conference.

Here are a few pictures from day one!

Yay!! We made it!

Waterfall in hotel

Waiting for the train to pass at Fritz's Restaurant

Family Fun Fest

Wednesday, June 17, 2015

Post Surgery Update

Well, it has been just over two weeks since Steele's surgery and we are happy to report that he is recovering very quickly!! We would definitely call the surgery a success in that there were no complications, Steele hasn't lost much strength during his time "off" from therapy, and he is eating normally!! We are so thankful to have this major step behind us especially because we are leaving for the annual SMA conference TODAY!!!

This year the conference will be in Kansas City, Missouri. It is hard to believe that it has already been a year since the last SMA conference. As we have been preparing to leave I can't help but to compare my emotions this year to the emotions I was feeling last year at this very time. I have mentioned this before, but last year about this time I was second guessing the trip. I was anxious, scared, sad, and a host of other emotions-all which seemed to hit me at the same time. This year I am anxious but for a completely different reason. I can't wait to go see the people that have become our SMA family. I can't wait to go be with others that just "get" us because they are going through such similar situations. I am excited to laugh together, to cry together, and to learn together.

Be sure to like Steele's Facebook page as we will post pictures and updates throughout the conference. We are so excited to share this experience with you.

As always thank you for your prayers and support!!

Saturday, May 16, 2015

Our Strength Will Rise As We Wait Upon The Lord...

About a year ago we were gearing up for our first SMA conference in Washington, D.C. I wrote before about all the emotions that went into attending that conference and about how much knowledge and support we gained in just 3 short days. Before we went to the conference last year we wrote down some questions that we wanted to be sure to seek the answers to, and also some goals we hoped to achieve while at the conference.

One of the questions we were hoping to learn about was surgery and SMA. More specifically, we were interested in learning about a tonsilectomy and SMA. At the time, it seemed that Steele was sick at least once per month with a cold or sore throat. Steele was born with some big tonsils, and each time he got sick they really seemed to swell and cause him problems. Not only were we battling the fact that he didn't feel well and didn't want to physically move, but then he would gag and eventually vomit because he was basically just too swollen. I have mentioned before that Steele's nutrition is very important. We focus on everything that goes in (and even comes out) of his mouth.

So we went to the conference and asked around and basically were relieved to hear that other families had been down the same road and were able to successfully have the surgery. Of course, each child is different and as always there are risks with anesthesia, but we were happy to know that just because Steele had SMA didn't mean that this surgery was not an option.

We had no idea what we had ahead of us. We went to Dallas to see his ENT who, at the time, did not agree that it was time to take out Steele's tonsils. As I have said before surgery has its risks, and we respect that his Dr. is concerned with Steele's overall wellbeing and safety. So we just did what we have done with Steele from the beginning. We prayed about it and trusted the Lord with Steele's life. Its been a bumpy road since then...several illnesses that we have battled at home and two hospital visits and here we are, a year to the month later, and Steele will be having surgery to remove his tonsils and adenoids in June. I don't know why God chose to have us wait a year, go through several illnesses with Steele where I wondered if he would ever be able to move the same again, and be in the hospital watching and really feeling so sad and helpless to see my sweet son in the shape that he was in, but He did. I am choosing to trust His plan. There may come a point in time where I can look back and know exactly why he had us wait, or there may not...but He has a plan for all of us. I like to think while we wait on him, our character is being developed and matured. Therefore, I am thankful to be waiting on the Lord.

Why am I writing about this? Well, my answer would be for a couple reasons:

1. I write because I want to share a lesson that I am learning as I go through this season of life. I believe that God lays things on our hearts that may be "right" for us, but they might not be "right now" for us. This has been true so many times in my life, but I feel like its happening over and over
again in this particular season. Its hard for me because I can be very impatient at times. It makes me think of that annuity commercial "But its MY money and I want it NOW!". That commercial always makes me giggle because its so ridiculous, but don't we all have that attitude from time to time? We want what we want, oh, and we want it NOW! I have to admit, I think this has happened so much lately because its an area God realizes I have struggled with and he's giving me more opportunities to be patient. To grow. Sometimes those opportunities just feel yuck! But I am thankful to serve a God that cares about my growth. He wants me to be better, and He's helping me get there! Our youth pastor said something in his last service that really hit home with me. He said "When you begin to feel entitled to something, you are no longer thankful for it." Yikes. I pray that I never feel entitled to God's leading, direction, love, or blessings.

2. I write because I am asking for prayer for Steele. As I stated above, there are risks associated with surgery and SMA adds some complications. I believe that we are being guided by the Holy Spirit and have made the best decision for Steele for his future health and well being. I ask that you
would cover him in prayer that he would be healthy and strong going into surgery, and that his recovery would be quick. I ask that you would cover his doctors in prayer. That they would make wise choices in the operating room that would best benefit Steele. That you would cover Beau and I
in prayer. That any and all fear or worry would leave and be replaced with God's peace. That you would pray over us as we travel. The surgery will be in Dallas, and we will remain there for a few days after surgery just to be sure Steele is healing like he should. My mom and one of my sisters will fly in from Arizona to spend the week with us and just be an extra set of hands. We are so grateful they will be there with us, and I ask you would pray for them as well.

Thank you, again, for your encouragement and prayers as we take this next step in our journey. I pray that you are encouraged today too!! God Bless!! 

Sunday, April 26, 2015

Playing For Someone Besides Themselves

Its been a long time since we have updated....too long. But that's a totally different blog post. This post is going to focus on some of the really exciting news about events that have transpired in the last week, as well as some events we are looking forward to in our near future.

So let's get started :)

This past week, April 21 and 22, the University of Louisiana at Monroe (ULM) softball team played games in honor of Steele. The entire team wore Steele's logo on their uniforms, and Steele was able to throw out the first pitch at both games! Not only that, but the team allowed us to set up a
table and sell Steele's t-shirts, bracelets, stickers, hats, and raffle tickets (more on the raffle tickets later). This was actually the second opportunity we have had to have a "Steele Strong" night on the ULM softball field. For those that do not know, I (Lindsay) played softball for ULM in college.
I also helped out a bit on the coaching end for one season a couple of years ago. Since my time at ULM, however, there have been a few changes in the program. Obviously the girls that I played with are no longer there, but there is also a new coach. Why do I bring this up? Well, this is where
the story gets more emotional for me. This new coach and most of the girls on the team really didn't know myself, my husband, or Steele prior to commiting to this game. There are a few girls left from my time of helping to coach that we have come to know and love, but as a whole, this team
was not yet familiar with us. They commited to doing this amazing thing for us because they consider us part of the softball family, and at the end of the day they are just good people. It amazes me that girls that I never stepped foot on the field with as a team mate were so willing to help our famliy. To play in honor of our son. To commit to playing a game that they love for someone besides themselves. So, to the ULM softball team and coaches.... we thank you, from the bottoms of our hearts. You may never know what it meant to this momma's heart to see my son on the same field I spent countless hours on and be able to throw the first pitch. You see, when we received this diagnosis many things changed in our minds and hearts. Some of our "dreams" for Steele changed... some disappeared. I was no longer planning for baseball games, and soccer games, and football games for his future. But you gave him, and me, an opportunity to realize that I can still dream for my son. He and I have both pitched on the same field, and that is a gift and a dream that you helped to fulfill. You were the tool that God used to remind me to never stop dreaming. HE is able. HE is faithful. And HE wants to work things together for our good. Thank you, ULM softball, for allowing yourselves to be used in that situation. Go Warhawks!!

I think its also very important to mention that at those two games we were able to raise close to $1000! We are so grateful for the money raised, and this next part may even give you the chills. We have had our eye on what is called a Zip Zac (I will include a picture below). It is basically
a wheel chair-type device that sits low to the floor. This will help Steele to get around and be able to pick things up if/when he drops them on the floor or if he just needs something at a low level. What I plan to use it for is putting next to his bed so that he can get out of bed and move
about the house in the morning INDEPENDENTLY. This is something he has never done. He waits in his bed each morning until I or Beau comes to get him. I would LOVE for him to be able to do that on his own...not because we don't want to help him but because I want him to be as
independent as possible for himself. Anyway, these things usually sell for about $2200 (yikes, right?!) About a week and a half ago a mom posted in the SMA support group that we are involved in online that she was selling her son's old Zip Zac chair for $900. And, GET THIS, she is from
LOUISIANA. I immediately told Beau about it and without a second thought he said GET IT! We did all of this BEFORE the fundraiser at the game. And what-do-you-know?? We raised a little OVER what we needed to get that chair. Isn't God so good? He is good whether Steele has that chair or not. Please understand my heart,and don't think for a second I am saying he's not good if we don't have this or that. We have been thinking, praying, and talking about that chair for a very long time.
We have come this close to just buying it at full price so many times! And now this. Its not a coincidence! That's God.

Oh, and did I also mention that Steele has an appointment scheduled on May 1st in Dallas? That mom (who is selling us the Zip Zac and lives just west of us) is going to meet us on the interstate on our way to that appointment to pick up the chair! This appointment was made more than a month ago.
 All of this happened and worked together in literally the last 2 weeks.

Its just flat, NOT coincidental. To God be the glory.

The last exciting bit of news is that we now have a facebook page exclusively dedicated to Steele!! We launched it about a week ago and have already had a great response without really even putting it out there. So go check him out on facebook by clicking this link: Steele Becton "Strong as Steele"
This is where you will see more of the day-to-day stuff that goes on in the life and times of Steele Becton. It will include updates, praise reports, prayer requests, upcoming fundraisers, and maybe even a cute picture or 5,000 of the man himself ;)

This is the Zip Zac chair mentioned above :)

Mommy, Steele, and Daddy at the "Steele Strong" game

Steele passed out flowers as a "Thank You" to the team...such a gentleman!

The First Pitch.. Daddy giving pointers
Thank you Coach Lyon and the 2015 ULM Warhawk Softball Team

Friday, November 7, 2014

Life As We Know It....

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 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
Moving Forward….
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. 
Prayer Requests…
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!

Sunday, June 22, 2014

FSMA Conference

Wow! Its been a week since we arrived back from the conference, and I am just now feeling like we are getting back to our “normal” around the house. We had such an amazing time at the FSMA conference and I wanted to let you all know a bit about our trip!
We received a scholarship from The Pennington Foundation to attend this year’s FSMA (Families of Spinal Muscular Atrophy) conference in Washington, D.C. We knew this was such a fantastic opportunity, and we had to take advantage of it. In the weeks leading up to the conference I had feelings of excitement and anticipation, but then just a few days before we were set to leave fear and anxiety overcame me. I think the reality of where we were going and what it meant finally set in. One night, as Beau and I were getting ready for bed, I remember just breaking down and crying to him that I was so afraid to go. I was afraid of what information I would hear or see, afraid to meet new people, afraid of all of it. All of the sudden I didn’t want to go to this conference. I just panicked. I prayed and prayed for God to take away the spirit of fear that overcame me. I prayed that He would guide our path and use this conference to provide us with wisdom and understanding of what He would have us do for our son.
We left on Wednesday afternoon and were set to get in to D.C. around 11:00 pm.  Our flight was delayed, as flights often are, and by the time we waited in line at D.C. to get a taxi and arrived to the hotel it was 2 am. We were all exhausted, but thankfully, Steele was a trooper. He just went with the flow. I think he was happy to be on a new adventure.
We slept in late the next morning, and by the time we all got ready it was time to head to the very first event of our day. It was a general meeting for all of the “Newly Diagnosed” families. That is anyone that had received a diagnosis of SMA within the past year. We started at the registration desk were we were immediately greeted by a man that introduced himself and welcomed us to the conference. He told us a little about his son, who was sitting on the counter down the way. He was a bit older than Steele, probably about 8 or 9, but I remember looking at how he was sitting and the way his legs were positioned and thinking, “Wow, he reminds me of Steele”. I remember the man telling us that we were going to love it at the conference, and he said the best part about it was that you find that “you’re not alone”.  I didn’t completely understand what that meant at the time, but it would be something I would learn and believe during the rest of our time there. We proceeded down the hall where we dropped Steele off in the children’s program. It was a huge room and the floor was covered in sheets and toys. In the background, a movie was playing on a huge projector. I remember looking at that room and thinking, “Wow! They get it!” You have to understand that I’m that overprotective mom that lays out every little detail for anyone and everyone that I ask to keep Steele. I remember putting him on the floor, looking around at the other kids in the room and I didn’t have a need at all to give the people the 10 minute run down about Steele. I knew I didn’t need to tell them that they had to be careful when they set him down because he might fall over. I knew I didn’t need to tell them that he might not be able to make it all the way across the room to play with a different toy. I just knew that they knew. I just had a peace about it. I am so thankful for the volunteers that gave up their weekend to spend time with our kids in that room.  
Then we went to our first meeting. It was a general session that would explain what we could expect from the weekend, introduced us to members of the FSMA board, and briefly educated us on the basics of SMA. They welcomed us to the “family we never expected to be a part of”.  It was in this room that any and all fear that was left in me was gone, and instead I just felt comfortable. After the session, we headed to a “meet and greet” with the other families. Within the first 5 minutes of being in the room we were approached by a mom that we had been communicating with via facebook. She was one of the first moms to reach out to us when we received our diagnosis. Although we hadn’t met before, it felt like we had. She was open to any and all questions that we had, and really gave us a lot of good tips and information on what we could do to help Steele. I am telling you these parents deserve a PhD in their kids! They are so full of valuable information about SMA. We talked to a few other people before it was time to go to our first session called Optimal Care. It was broken into classes based on the type of SMA your family member had, and there was also a grief and loss group. That was difficult to see, it became very “real” at that moment. That this diagnosis takes so much from these kids, these families.  We gathered what seemed to be a wealth of information in that hour and a half meeting and at that point I had this overwhelming feeling of thankfulness to be there. I was so glad that we pushed through and came to this conference. I knew then that we were exactly where we were supposed to be.
After that meeting it was time to get Steele and head to the “family fun fest” where they would have a carnival-type set up complete with games, prizes, toys, and food. This was another time in the conference that I just felt welcomed with open arms. One of the first things you notice when you walk in…wheelchairs! There were so many people, of all ages and sizes in wheelchairs or strollers. Some of the kids were pushed around with medical equipment, some had manual chairs, many had power chairs, and everyone was just having a good time. The researchers and doctors were also present at the fun fest, and participated in a wheelchair race against the kids. I will say that those kids knocked the socks off those researchers! The kids had a blast (and I think the researchers did too). Steele traveled around to the game area after a while, and of course, chose only to play the games where he could throw something at something else. So, not only was he able to throw things (way up there on his preference list) but he earned prizes to do it. Win-Win. To say he had a blast is an understatement.
The next day was day 1 of the general conference with all of the families. The day was broken up into general sessions and workshops. There were about 36 different workshops offered over the next two days! We were able to pick and choose which sessions we wanted to attend. Beau and I took on the “divide and conquer” mentality and attended separate workshops to get twice the amount of information. I am really glad we did. We were able to get information about type II in general, therapy ideas, nutrition for type II, information about breathing, toy adaptation, and Steele and I even attended an aquatic physical therapy class while Beau was in a “dads only” class. What we learned is that there is so much we could be doing to help Steele now that we haven’t been because we just weren’t aware! Knowledge is power! We took notes like crazy and knew we would have our work cut out for us when we got home.
That night, we had a research poster session followed by a dance party! The research poster session was fantastic because it put us face to face with the people that are working like crazy to find a cure for SMA. They informed us that it takes about 10,000 ideas to get ONE drug to go through each of the steps necessary to gain FDA approval. The researchers are SO CLOSE with TWO different drugs right now that seem to be beneficial to people with SMA!!  It would be so amazing to have a cure for this disorder.
Now stick with me on this part, because it might sound a little silly. We went to the dance party after the poster session, and if I’m totally honest that was my emotional breakdown. I couldn’t believe that I had sat through the workshops and learned what I did about SMA and didn’t shed a tear, but here we are at this dance party and I am crying in the middle of the dance floor! I know that it was tears of joy to see all the happy faces of not just my own child but every child in the room. I really felt that feeling of family. I had a connection to those parents. I had a connection to those kids. There was just joy and love in that room. It overwhelmed me. So what did I do? I kept on dancing. Dancing and crying. Dancing and smiling. Dancing and laughing. With my husband, my son, and my new family.
The next day was more sessions. More information. I remember laughing with Beau saying, “Did you ever think you would be so excited to sit in a room and listen to a presentation?” We just craved the next meeting, and the next.
Our last night was pj and movie night. They provided snacks and again sheets and pillows to be spread out over the floor. They played one of Steele’s favorite movies, Monsters University, and he was so excited! We all sat on the floor, the kids and parents, and while the kids got to snack and watch the movie the parents got to chat. I just can’t explain the feeling of being around others who just understood and were going through the same things we were. And those words came ringing in my head, “you’re not alone”. Please understand that I know God is always with me, and I am never alone, and God is MORE than enough for me. It was just a bonus for me to have connections with these families that were experiencing life in a way that was so similar to mine.
So we are home now, and like I said before we have our work cut out for us. We learned about some medical equipment that could help Steele when it comes to breathing and sickness. As many of you know, he has been battling sickness pretty consistently lately. And when he gets sick its not your run-of-the-mill cold. It is EXTREMELY difficult on his body and strength. It basically has been knocking him down. It can be hard for him to clear secretions and because of that hard to breathe so he fights hard. There is a machine called a cough assist which could basically help him to cough and get the junk out. Then, there is a Vest that he can wear that will shake the junk loose in his lungs. So, our first project is to get a hold of those pieces of medical equipment.
 We also found out several new ideas for therapy, and learned that we need to drastically increase the amount of time per day that Steele bears weight. This is beneficial to his bones, spine and hips. At this point Steele is only able to bear weight with physical assistance from someone else. Trying to entertain an almost two year old, while helping to physically hold his body up, while competing with his desire to just sit because its easier is not an easy task. Thankfully, I know a bit about behavior and what motivates him so I have that to my advantage. I am up for the challenge! Eventually, we would love to try to get a piece of equipment called a stander that would hold him in a standing position allowing him to bear weight so that I could have my hands to play and entertain instead of helping to hold him up.
Along with that we are exploring some diet options for Steele. Nutrition for SMA can be a bit tricky because its an area that just hasn’t been studied as well. You would think that since his body lacks the ability to produce protein to build muscles that you could just feed him a bunch of meat to make up the difference. This is not the case. Too much protein can actually be harmful to his body. So now our goal is to find what works best for his body.
I will say as much as we enjoyed the conference there were some aspects of it that were just flat out difficult. I learned and saw many things at the conference that just made my heart ache for Steele. I don’t want to watch his body lose to this diagnosis over time. We won’t just sit back and let it happen without a fight. So, I’m asking for prayer. Please pray that God would continue to work in our lives and provide us with the guidance and wisdom to make choices that would honor Him. Please pray for my strength as I continue to work as often as possible with Steele to maintain and improve his strength. Please pray that we would not grow weary. Please pray for the researchers and doctors and their families as they work to find a cure. And please continue to pray for healing over Steele’s body.
Thank you all, so much, for EVERYTHING you are doing for our family. 

Here are some pictures from our trip :)

Family Picture on the Airplane
Arriving on Day 1 of the Conference
 Family Fun Fest!!

Taking a lunch break between sessions

 View of the hotel from the elevator
 Steele LOVED riding the elevator
 Enjoying the Dance Party!!!

 Headed to the PJ and Movie Night
 Father's Day Picture
 OUT!! Sleeping on mommy and daddy on the plane ride home.