Hope for Max and Alex

Seriously, we continue to come up with material for a reality show!

Well, first and foremost, Max and I are fine.  Yesterday, we were on our way home from aqua therapy and were involved in an accident.

We were headed westbound on Gulf Beach HWY (two lane road) and a VW Bug was head eastbound. The VW crossed the center line into oncoming traffic and the truck in front of me managed to swerve, but ended up clipping the VW and sent it into a 360 into my van. We were going about 45 mph. The man driving the car died at the scene.

By the grace of God, Max has only some minor bruising and a little lower back pain where his seatbelt was. His chair released and flung him forward. When we came to a stop I immediately turned around and he was face down completely bent over the tray to his chair. I was petrified that his airway was cut off and I couldn't hear him crying due to all the noise around us. I was able to reach back and lift him up, but his chair kept trying to lean forward again, so I had to hold him until a gentleman came up and was able to get in the back of the van and physically hold the chair down, so that I could actually get him out. The car behind me had stopped to come help and we laid Max in her vehicle until the ambulance arrived and took us to the hospital. My wrist is pretty burned and banged up from the airbag and my neck is achy and so far I have found 4 bruises. I was able to lift Max at the scene and take care of him, but by the time we got to the hospital  I think my adrenaline was gone, because I couldn't even move him. Now, I am not one to hysterics, but I will say, I was pretty hysterical. They kept asking me what I needed from the van and I finally had to yell at them to stop and let me think for a minute. Max had only enough food for the next hour and I needed to call Aaron. The van can't go to just any repair shop, so I needed to look up the number for the local mobility dealership. I can't even tell you the amount of problems I was trying to trouble shoot. All the while knowing that the van we worked so hard for and so many people helped us with was in ruins and Max's only access to freedom, his chair, was broken. I calmed down and went back to the van to get some of his supplies and proceeded to lose it again when I say how extensive the damage actually was.  Aaron was unreachable at the time and I called another wife who was able to call the squadron and commander's wife. Of course, there was so much chaos and traffic at the scene that Aaron didn't get there until long after we left. Below are some pictures of the van. Aaron called from the scene, because after seeing the van he couldn't believe that Max and I were really okay.

I had no idea that the man in the car was killed. I didn't even know a helicopter landed there until someone told me later. Aaron was actually the first person to tell me and he thought I already knew. Looking back it makes sense why they wouldn't let me go to the van without an escort and there was a highway patrolman blocking me from going past the front of the van. Please pray for the repose of that man's soul and for his family. They lost someone special to them yesterday.  We have no idea what caused this man to veer into our lane and regardless of the reason he was a person. If there is one thing that Aaron and I have learned and are trying to impart on Max it is that every person regardless of abilities or disabilities, what one "contributes" or doesn't, if a person is "bad" or good, is a person of dignity and we should treat them as such, because we were ALL made in the image and likeness of God.  

Now for what I learned from this situation. One is that you are never prepared! In Charleston I had lots of plans in place, people who had access to our house. knew what kind of stuff we needed and so on. I think because Aaron is not traveling right now I had grown into a false security. Of course, he was still unreachable when this happened and I didn't have any numbers from the phone roster for his work. Luckily I had just gotten a couple of numbers from friends in the last two weeks, who were able to get the ball rolling. Once again the AF community stepped up, as they have for us more times than I can count.  Mary Anderson, the commander's wife, came to the hospital and stayed with me and actually assisted in playing some switching of vehicles so Aaron could go ahead and get Max home while I was still waiting for x-rays. I cannot thank her enough for this, because she just might have kept me sane.

As for the van, it isn't like we can just take it anywhere. In the midst of all of this we were trying to find a number for the mobility conversion dealership, so that they could get the van. Then there was the pesky detail of how to transport Max. Thankfully, I remembered to tell Aaron to get his strap system that he lays in the van with, so that we could lay him down in the car to get him home. Also, my parents brought over my grandmother's mobility van for us to use temporarily.  It looks like our van will be totaled out, so we have some decisions to make, fast. Aaron and I were out looking this morning trying to figure out what all we need and it looks like we will probably upsize into a full-size conversion van. Crazy, I know. The thought of driving something that large makes me want to throw up.

His chair is also broken. The guy is coming to look at it on Monday, but depending on what he says we may have to completely replace the chair. Needless to say Mr. Max is back to a manual chair, which he is not super stocked about. He does, however, understand that his chair is broken and needs to be fixed. He is such a mature little guy.

This is what his chair did during the impact. His chin brace came off and the black shoulder pieces that hold his torso in place released and sent him forward, doubled over. Thank God for the seatbelt. How he managed to not hit his head on the console between the front seats is beyond me. He was basically coming out of the chair.

So I think that is it for now...I know, like there needs to be more. I'm sure this will be a continuing saga for weeks/months to come. Right now, I am just once again grateful for our guardian angels who have really been putting in some overtime recently. For those wondering...I was back behind the wheel today and even drove down the road where it happened. I can't say it was without trepidation, but I also can't allow fear to control me. Peace to everyone and be safe on the roads.

Sorry about that...

I'm not sure what craziness was going on with my blog when I tried to cut and paste the last post, but I applaud all of you that managed to read it, because I tried and it was exhausting! I have now repaired the previous post, so for those who that they would actually go cross eyed before finishing you can go back and catch up :). So now for a couple of updates...

Nurse Robin and I took Max to the planetarium on Tuesday and he loved it! He was really cute. We went with some friends of ours and their daughter's girl scout troop. He is still talking about the talking sun (a kids movie explaining the solar system). He feels the need to remind me that suns do not actually talk. Toward the end of the show we were "flying" through space and he told me that he wanted to say his prayers while we were in space. Funny how all this talk about the universe made him want to pray, so we said the Glory Be and Our Father...such a good little catholic boy, makes his mommy so proud!

Got his IPad from the school on Wednesday and started playing with it yesterday evening. He was so funny, he congratulated me on my latest invention. I appreciate that he thinks I am smart enough to invent this (poor kid doesn't know any better). He thought it was pretty cool and was very proud that he played table hockey. I will definitely have to get an arm sling if we want him to be able to operate it. To give you a clear idea of how gentle his touch is (because practically everyone we know has some experience with an iphone or ipad), he can actually activate it, but it requires a lot of exertion on his part (so imagine that you were attempting to use ALL your strength just to press that screen hard enough to activate). I have to support his arm fully the whole time (which is why we need the sling). It is still a little touch and go as to whether this will be a viable option for him, but I am hoping with the proper body supports he will be able to utilize it.

In fundraising news, so a friend of Aaron's from Duluth, Adam Swor, contacted as a few months ago. He and his wife have taken up marathon running in the last few years. This year they are once again running the Grandma's marathon (huge in the Duluth area, ahhh  Grandma's...FItgers...yummy, but I digress). They have a little boy about the same age as Max, and have felt a special connection and desire to want to contribute in a concrete way to finding a cure for SMA. This year they decided to run in honor of Max and Families of SMA. Below is a link to their donation webpage. Their goal this year is $3000. We are honored that they would take their time and energy to raise money for FSMA. Anyone who knows Aaron and I, well, you know the only running I do is to a sale. I am always amazed by those who commit to the training and endurance marathons require. Thank you, Adam and Lori for taking the steps that Max cannot!

www.fsma.org/giftreg/adamswor

Peace and a great weekend to everyone!

Vacation Re-Do

I think if I had to choose one word for the past 9 days it would be PACKED. I really feel like we have gone non-stop, which is good because that means that Max is doing well. Some of the events that have filled our last few weeks are non-Max related (yes, those do exist in this house) and more about Aaron. He is in the home stretch of finishing his Master’s degree and is having to spend a lot of time writing papers. The good news is that if all goes as planned, cause that always happens at our house, right? Aaron will be done with his degree at the end of June. He has worked very hard on this for the last two and a half years and we are all excited about seeing it draw to a close.

Memorial Day Weekend we decided to do a small vacation re-do. Max was healthy and Aaron had Monday off, so we headed to the GA Aquarium for the weekend. We stayed that the Embassy Suites in downtown Atlanta across from Centennial Park. Hotel stays are always great fun, as we then get to travel with cleaning supplies. Typically, when we get to a hotel Max and our stuff can’t come in the room until Aaron or I have gone in and wiped down ALL touchable surface areas (anywhere our hands or stuff could come in contact) and Lysol all fabrics (couches and bedding). Max never uses a hotel pillow or lays directly on the bed or couch. Upon returning home all the equipment gets wiped down at the door, and all bags are sprayed with Lysol, and all tubing and face masks are sanitized. Let’s just say that it requires a lot of organization and planning. FYI – for anyone wanting to make this trip, stay in a hotel that is considered “by Centennial Olympic Park” because then your vehicle gets valet
parked and you can walk to the park, aquarium, or Coke museum. It’s even reasonably easy for wheelchair accessibility. Max loved the aquarium although I’m pretty sure he loved the gift shop at the end the best. It really was a great aquarium. I wish we would have been able to go at a less busy time and maybe we will do that in the future. Aaron and I didn’t even take any pictures because we were so busy navigating the crowds with Max. The staff was great and very helpful. We were hoping to leave and come back after a few hours, because Max needed to get out of his chair for a bit, but once we got outside and saw the lines…we ended up not going back. No one wanted to face even bigger crowds. We also spent some time over in the park letting Max venture around, he seemed
to enjoy the people watching.

We got home Monday afternoon and hit the ground running. It always seems that shorter weeks take SO MUCH LONGER. On Tuesday his nurse called out, so Max and I spent the day doing laundry and looking for treasure with his treasure map and Aaron didn’t get home from work until almost 8pm. On
Wednesday, Max had Aqua and Speech Therapy so that took most of the day and I had to wash and clean the van from the trip (which wasn’t too much fun in this heat). I basically spent all day in the van.

Thursday was Max’s IEP meeting. I think it went pretty well. Once again the school district was ready and willing to work with us and addressed our concerns. We all agreed that pre-k is not about learning content for Max, he has most of that. It is more about classroom etiquette, socialization, and most importantly, assistive technology. Assistive Technology (AT) is what will allow him to perform his class work like the other kids, this could be with an eye gaze system. Basically, if the class is coloring a picture about a story they just read…how does Max color a picture? Possibly with an IPad, possible an eye gaze. This is all stuff we will be working on heavily next year, so that when kindergarten rolls around he will be ready to hit the ground running and focus on content. Unfortunately, Max will not be going to the same school next year. The staff was great, but they do not have any general education Pre-K slots (only ESE) and we all decided he needed to be moved to a typical classroom. The hard part is figuring out exactly what school he will go to. In a few weeks I am going with the head of Pre-K to look at two schools. Both are closer, but the concern is that they actual classrooms will not be conducive for his chair and we need to look at what changes need to be made in order for those to work. Unfortunately, the school we are zoned for is great, but they don’t have any pre-k classes at all. They would all like for him to have one specific teacher at a school, but she is in a portable and
while they can make it accessible the room is a lot smaller. This teacher is apparently the epitome of organized. This is important, because they are going to require her to hand in her lesson plans to the OT and PT at least two weeks in advance, so that they can assess it to see how Max would complete the task based on his abilities. In addition, Max will get 60 minutes of OT and PT a week. Also, WRITTEN in to the IEP is that there will be a mandatory meeting of all school personnel associated with Max, teachers, OT, PT, principal, nurses,district people prior to the beginning of the year to address Max’s needs and condition. Written is important, because you can chat about things all day
long, but if it isn’t written into the IEP (which is a legal document) it doesn’t exist. All and all I felt pretty good leaving the meeting. I still feel that they truly have Max’s best interests at heart and are excited about the challenge of helping him thrive in the classroom.

Friday, Max and I spent most of the day working on his assistive technology stuff with some sweet women from the school district. AT really is the bane of my existence (because everything is customized to a person’s abilities)…congratulations Apria, you have been bumped! I am not technology savvy and I really need to be. For instance, we purchased the mouse adaptor for Max a few months ago. Well, the option for the left click kept giving us trouble and Max would get really frustrated because he would play for a little bit and then it would quit working. I did manage to trouble shoot that it was something in the actual box, so they cam e out and replaced it Friday before last. Well, low and behold it started doing the same thing, so I called tech assistance and they led me through the trouble shooting to see what was going on ( I did have to pat myself on the back, because I did everything the tech guy told me to do on my own). His conclusion was the same as mine, so they
are waiting for the first box, so they can open it up and see what is going wrong. In the mean time I had to switch our left click on the computer to a right click so that Max could activate it. Okay, has anyone ever tried to do this. You basically have to retrain your brain! I can’t tell you how many times on Friday I couldn’t click on anything and was getting irritated only to realize I was trying to left click. Now in addition to trying to figure all this out I am also working with a four-year-olds attention span and I really need him there because it works off his chair. Now this was all before the AT people even got to our house. Once they got here we worked on some eye gaze and they showed us an on screen
keyboard Max can manipulate with his chair to work on spelling. We also brainstormed about some other AT options. I’m excited because they are going to drop an IPad off next week for Max to try for a few weeks and we are also planning to meet weekly through the summer with some reps to learn about different equipment. I explained to them that since this is not my gift I really don’t want to “play” with a lot to teach Max how to use it, because I could also teach him some bad habits (not the easiest way to do something) and then we have to “unteach” him. My goal is to have a framework of equipment to pull from and adapt during the school year.

So as you can see I was mentally exhausted from all this brain-storming! Aaron left on Friday for the weekend and my cousin Terri came to stay with me and Max. Saturday morning we took Max to the beach and had a great time playing in the sand and sitting on the shoreline. Now I know I love
Charleston, but seriously you cannot beat the beaches here in NWFL. It was a beautiful day and Max loves going to the beach. Even better is that it is only a ten minute drive from our house, so it’s super easy. We like to go first thing in the morning and are usually leaving when everyone else is getting
there. Max was wiped out the rest of the day. He doesn’t realize that if he just take a nap after the beach he will be ready to play hard the rest of the day. He is insistent that you do not sleep while the sun is out (so, yep, he wakes up earlier to now).

Well, that about sums up our past week or so and we are gearing up for the coming week. All and all I would say this was a successful week with Highs.

Peace!