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.
Fundraisers…
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.
Awareness…
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.




 

WInner!!! WInner!!!!

WE HAVE A WINNER!!

Congratulations to Cindy Boggs of Farmerville! We thank you and we look forward to designing, building, and installing TEN THOUSAND DOLLARS worth of cabinets to your home! We want to thank everyone involved! Everyone who bought a ticket or more than one ticket! The Fundraiser was a huge success! We BELIEVE God has blessed our little boy and has also given us a community that has rallied around Steele. Between the t shirts, bracelets, hats, coozies, and tickets, it seems like the whole town of Monroe/West Monroe had some sort of involvement! We cant thank you enough. Continue to pray! Continue to believe! Together as a family of Gods Warriors, we are watching miracles happen!

We plan on posting a few blogs in the next couple of days! We apologize for such a long update! One reason was because we wanted the first blog that came up to be about the cabinet makeover or giveaway and t shirts; and as crazy as it sounds (I'm sure none of you have had this happen with a 22 month old.... haha!) it seems life turned into a rat race in March, April, and May. Whether Steele was sick, or we had out of town doctor visits or appearances with Steele promoting the Give-Away, it seemed like every time we had a spare moment it was midnight. SO! Having said that, we are going to make up for it! Get ready to read, and be amazed! Lindsay and I will be updating you on the past three months in the next WEEK!

Again, we cannot thank you enough! God Bless you all!

Tuesday, February 18, 2014

Raffle and T-Shirts


    First, let me start off by saying WOW! We raised just over $4,000 on Saturday and Sunday at the Home Show!!! Thank you to everyone involved! Thank you to everyone who donated! Thank you to EVERY SINGLE person who prayed! Most of all, I thank God for the blessings of yesterday, today, and tomorrow. Without Him, none of this would be.

  

Raffle/T-Shirt

Steele Becton Fundraiser Details

 

Cabinet Makeover provided by

AWT Custom Cabinets & Closets

Cabinets valued at $10,000 – can be used for closets, kitchen, etc.

TOTAL VALUE – APPROXIMATELY $15,000

 

Included from AWT:

Paint grade Kitchen and/or Bath and/or Closet and/or Garage storage Cabinets

No more than 40 linear feet of bases & 40 linear feet of uppers or 27 feet if tall cabinets

A complete set of CAD drawings to scale detailing design of Cabinets

3¼” crown molding on cabinets is included

Removal of existing cabinets

 

 Additional items included:

Granite (80 square feet), A or B Grade, donated by Louisiana Stone

Fabrication, installation and S/S sink provided by Twin City Granite

Materials ($400 value) & Labor for back-splash provided by Acme Brick & Tile Company

S/S Faucet donated by Coburn’s Kitchen & Bath Showroom

Paint & painter for cabinets only provided by Sherwin Williams

 

 NOT INCLUDED:

Sheetrock repair not included

Fixtures and appliances not included

Wall paint and/or painting not included

Flooring not included

 

 Thanks for your participation and we look forward to working with you. 

 

MUST BE USED BY APRIL 30, 2015.  ONE HOUSEHOLD USAGE/NO CASH EQUIVALENT

 

Winning location must be within 60 mile radius of Monroe

 

Raffle tickets are $10.00 each or 3 for $25.00

T-Shirts

$20 for Adult sizes Small-2X Large

$15 for Youth sizes X-Small-Large

 

IF you would like to purchase a raffle ticket or a T-Shirt, please contact one of the following:

Beau Becton 318-267-2066


 

 

Lindsay Becton 318-557-1556


 

 

Vicki Fletcher 318-381-0713

Email is vfletcher@progressivebank.com

 

 

Forrest Fife 318-376-9261


 

 

Diane Miletello 318-376-7177


 

 

Penni Aulds 318-614-0168


 

 

Thank you again and we will be updating our journey soon!

God Bless!