Hope for Max and Alex

Summer 2016 Beginning to End

I gotta tell you I am not quite sure what happened to this summer. There were quite a few differences from previous and some additional High family chaos, which has resulted in the synopsis vs. the day to day update.

What was good, even great, about this summer? Well, it was the first summer in two years that Aaron was home for the WHOLE summer! We had lots of fun things planned, camps for Max, a trip to FL, beach time, but of course, as usual nothing goes quite as planned.

My working this summer, thank you LuLaRoe, was a new added wrinkle to our normal schedule, albeit a fun and fashionable one. In between pool time and summer tutoring I was photographing and having online pop-up boutiques. It was crazy busy!

Max and Alex both attended VBS at Blessed Sacrament and LOVED it. It was Alex's first group experience and he had a blast! Summer was off to a great start. We had a week off for major hanging out and then Max had Robotics camp scheduled. He went the first day and loved it, but was clearly feeling off. On Tuesday he was really not feeling well and could not attend, but Wednesday his heart rate was VERY LOW and we made the call to take him to the ER. There we discovered via blood work that his potassium was extremely low, 1.4, for those who are aware of what the numbers are. Well, this won him a one way ticket to an admit. He was given IV fluids and potassium over the next 18 hours and released. Unfortunately, he missed the majority of his robotics camp. He did manage a triumphant return for the final day. 

I have to appreciate that when SMA takes some time off from throwing us curve balls. Other calamities come in to keep us on our toes. I mean, Max had never had an EKG before. Some SMA families are followed by Cardiac docs to monitor the strain on the heart from the weakened respiratory system, but this was an area I figured I would rather be oblivious too. Is that wrong? Maybe. To me, it is one more appointment that only brings us possibly dismal information without any real way to combat it. I've had enough of that in our lifetime, thank you very much!

Thankfully, Max was back to himself just in time for Alex's birthday party. This was the first time Alex actually had a real birthday party, so it was a pretty big deal to him. Now, he is our superhero obsessed child, so it was only fitting that he would have a Captain America themed party.

Now what happened after his party could not have been planned any better. Alex always likes to tell people that he is calling the police (the poe poes, as he likes to say) and getting you taken to jail. Aaron and I joked about getting an officer to come and pretend to arrest him. Now some people think that is a bit mean, but if you knew how much Alex teased all of us and his crazy sense of humor (and our really terrible senses of humor) this is to be expected. Now, of course, we didn't do that, so imagine my surprise when we are heading home from the party at the pool and see a police car pull into our cul de sac with lights on. Alex immediately starts freaking out, thinking all of his threats have come to pass. He is saying to me, "please don't let them take daddy to jail." The officer gets out of the car and asks for Aaron, now Alex is really freaking out. I actually had already dealt with this officer for a neighborhood issue previously, so we knew each other. Turns out there were some teens hanging out in our driveway when Aaron and Max got back from the pool and Aaron was none to happy about it. Well, the officer was super nice and he even had an Ironman mask with him, so he and Alex were able to discuss superheroes for a bit. What a crazy end to Alex's birthday!

Now July really flew by. We had a great Fourth of July with friends, enjoyed a lot of pool time and even some beach time. Aaron finally fulfilled his dream of seeing Guns N Roses in concert. Then to round out the month Aaron's brother, Andrew, his wife Jodee, and our niece and nephew, Kaydee and Sam, came for a visit. This was HUGE! We had not seen each other since Max was 9 months old. We had a fabulous time mostly just hanging out and spending some serious quality time together. The boys (and all of us) loved every minute of it. It was a little rough to see them go.

It was a good thing the boys had a trip to FL to look forward too. Just a few days after they left the boys and I packed up for a trip to FL, complete with my entire Lularoe inventory (as I was doing a pop-up). We really didn't do much at all while we were in Florida. It actually rained every single day while we were there. I can't complain too much, because the last two years we were there the weather was beautiful. Of course, it didn't matter the boys just love being at Papa and Nana's house and we were able to celebrate my Granny's birthday a little early.

Back to South Carolina to hurry up and get ready for school to start. Meanwhile, we were continuing to try and manage Alex's issues with constipation. While in Florida we thought we were doing pretty well, but by the time we got back to SC it was evident there was a bigger issue. Even with Mirilax and multiple enemas we were getting very little in the way of results. His poor belly was distended and hard. We were at a loss. I decided, and I am fairly good at this judgement, when it is time to call in someone else. So after Mass and the boys open house at school, I took Alex into the ER. They were very concerned with what they saw, so much so that now Alex won an admit to the hospital. Basically, without being overly graphic, Alex had a ball of stool so hard and large it could not break up or come out. There began four of the craziest days...and I say this being a parent who has seen emergency intubations and crash carts in my kids room. Alex was admitted to the regular unit and it was a debacle of miscommunications, new residents, and unfamiliar doctors. Honestly, our stay should have been overnight, possibly, two nights at most. All they were doing were enemas and Go Lightly, all of which we could do at home. They mentioned bringing in surgery, which obviously, Aaron and I found concerning, but then surgery would come in and say he isn't surgery material that we needed GI. Okay, that is fine, then LET US GO HOME. I would then tell the residents and attending, okay, if you aren't bringing in surgery then discharge us, we can follow up with GI and do all of this at home. Apparently, they interpreted that as I wanted surgery. No, I don't want surgery...do you people understand basic communication skills. It was so frustrating.

But clearly, that wasn't enough...we are always ready to up the crazy. We were managing pretty well. I was staying the night at the hospital, then Aaron would take Max to school, go into work for a bit, then come and relieve me, so, ya know, I could shower and what not.

Well, on Wednesday Aaron takes Max to school only to find out there is a bit of illness going around the class. He decided we had enough going on to risk that, so he took Max and Nurse Gina back to the house. He headed into work and then came to the hospital. I got home had something to eat and spoke to both Max and Gina. I then went to get in the shower. As I was literally stepping into the shower there was a banging on my bedroom door. I open the door to find Gina holding Max and saying he is unresponsive. I tell her to go put him on his bed and get his pulse ox monitor on. I get my robe on and follow her into the room. One look at him and a recognize he is having a seizure. Yep, that's right people, my kid who has been seizure free for over 3 YEARS, who went off meds last February, is having a freaking seizure. Add to that, that his oxygen is dropping and his heart rate is very high. I have Gina start to cough him and I am pulling out the oxygen machine and getting his bipap ready all while dialing 911. I gotta be honest. I was freaking out. I mean, what the hell?!?! The fire truck and ambulance got there and sort of took over, because Max's oxygen starting dropping again. He was turning blue. I had the nurse calling Aaron to tell him what was going on and that we were heading to the ER. Why did she call, the nurse? Oh, because I was freaking out! The EMTs administered Ativan, but Max was not coming out of the seizure. In fact, Max did not come around until almost on hour after onset and even that is conservative. Due to his frail respiratory state they were nervous to administer another dose, as it suppresses the respiratory system and that was the last thing we needed, if there was an order of "last things." Thankfully, Max responded, finally, to a nice hard pinch. Well, a seizure like that will also win you an admit, so now if you are keeping up we have TWO children inpatient in different units at MUSC. Now I know they are building a new Children's Hospital, I just didn't think my kids would be single handedly funding it with their admissions! Seriously, the docs could barely look at us without pity while we were there. Thankfully, upon seeing a FB post so many took it upon themselves to jump in and help out. The boys OT, who the LOVE, immediately text me and said she was coming to the hospital to sit with Alex, so that Aaron and I could both be with Max to get him settled and I was able to finally run home and get that shower. Another friend called our parish and let our priest know and he was down at the hospital with lightening speed to anoint both boys. Another friend ran Aaron and I dinner, which many offered to do, the timing just happened to be best with this person.

Thankfully, the night was uneventful for both boys and we managed to score what may have been the most coordinated discharge (and quickest) in hospital history. Both boys were in their chairs headed out of MUSC at 10:30am the next day. I still can't believe it!

We opted to keep Max home for the next week to see how he did and if we noticed any seizures and for the next few weeks all was quiet.

We closed out summer with a week in the Outer Banks. We rented the same house we did last year with hopes of a relaxing week at the beach. We followed a tropical storm up to Nags Head for our week. It was a week of beach time (after the crazy tropical storm waves receded), hot tub time, and exploring. Mostly, we just got to hang out, which after our summer was a treat. We learned about the Lost Colony at Roanoke, which was pretty crazy. We also took another horse tour this year. We requested the same guide as last year and John did not disappoint. This time we actually got to see the horses running on the beach. The boys loved his “crazy” driving and the adults loved all of the great information regarding the area. Of course, Nurse Gina didn’t really enjoy it when he pretended the truck was stuck way out and in deep water.

The hot tub is always a favorite, so much so that Aaron went out and got the boys an inflatable hot tub (yep, you read that correctly) for them this fall and winter. This will be great for Max and Alex, and I’d be lying if I said the parents are going to enjoy it too. This was an inexpensive venture to see if we would actually utilize a hot tub.

Aaron and I even managed to escape for a few hours for a bit of beach and frozen yogurt.

 

We headed home after a very peaceful/uneventful week. Thankfully *most* of our drive was uneventful. Unfortunately, about an hour from home the whole van started shuddering. Aaron is pretty handy to have around and pulled over to check the tires. The torq was fine on them (what the heck is torq anyway???), but obviously there was an issue. Upon arriving home he discovers one tire is completely misshapen. We ended up having to order all new tires for the van, not really an expense you want right after vacation. We couldn’t complain too much though, because we made it home safely.

 

When we returned home it was time to settle in for the school year. Max returned to school after a full two weeks off. Fourth grade is challenging and Max is working very hard this year.

 

Just when we thought summer was all wrapped up…I went and signed the boys up for adaptive surfing last weekend. I seriously thought Aaron was going to kill me. For that weekend alone we were scheduled for a charity walk with Carolina Children’s Charity in the morning, adaptive surfing experience in the afternoon, and the an adaptive recreation expo on Sunday afternoon. Over commit much?

Well, we were up early on Saturday and getting ready to go. I heard Aaron talking to Max and he sounded a bit funny. I knew what was coming…Aaron called out to tell me that Max was having a seizure. This seizure was a bit different, this time he was blinking rapidly and his face was twitching. Thankfully, this seizure lasted only 4 minutes, so we did not have to give any additional medications. Max’s oxygen level dropped rather low, but only for a brief bit. We put Max on his bi-pap and he slept for about an hour and a half. When he woke up he was upset about missing the walk and having had another seizure. We have now come to the point where we need to learn to adapt. We cannot let seizures rule our lives. We didn’t cancel the whole day out of fear of another seizure (or fear of letting our immobile children into the waves with strangers on a surf board, but I digress). Instead we loaded up and headed to the beach. We got out to the beach a bit later than we were hoping for and the waves were getting quite rough. Aaron and I began to feel very uneasy about letting the boys go out there and Max had already expressed his concern. Thankfully, The guy who was to ride with the boys on the board came up and started talking to us about it. He was so amazing and we breathed a sigh of relief. Both boys were able to go out and Max referred to it as “EPIC.” Alex loved it too. For Aaron and I it was a chance to relinquish a little control for a brief period and you know what, everything was fine! Who would have thought????

 

We are now knee deep into fall, having already survived Hurricane Matthew, although at one 12 hours without power you would have thought our children lost the world, first world problems much.

The boys have their Halloween costumes and are ready to try our Disney trip and praying the third time is the charm in a few weeks. We are about to enter what I like to call the Max trifecta…Halloween, birthday, and Christmas and now to throw in a vacay too! I hope he can handle all the fun. Alex has recently informed me that he needs another birthday each year…good luck with that one kid.

 

The vacation that was, then wasn't, then was, then wasn't, and how things finally work out

I know I have been a terrible blogger of late. Frankly, whenever I do blog I know I am not all that good thanks to reading some really awesome bloggers. I could give you a list a mile long of women who are much better at this than me. I have learned in the last year that blogging is not something I love to do. It takes a lot of time and puts me out there emotionally in a way I really don’t care for. How is that for honesty? Also, life is busy and getting busier. When I do have a bit of downtime there are other things I would rather be doing. Thankfully, the boys have been pretty stable over the last year and our catastrophes have been few and far between. We are living life. Also, I did something a little crazy and started selling a clothing line, LuLaRoe. I have had very few outlets in the past several years. I mean, literally, I do bible studies (which are my sanity many weeks) with some amazing women, but outside of Aaron and the boys that was pretty much it. LuLaRoe, is providing me a way to connect with other women and hopefully share a little with something I enjoy, shopping and helping people find the perfect outfit. It has been exhausting, busy and fun. It has required me to stretch myself in different ways that I haven’t had to in years. It also functions completely out of the home, so I am available to those who need me most. There you go. The reasons I have been a terrible blogger, but now I have a little something to blog about…

The vacation that was, then wasn’t, then was, then changed and how we ended up driving up a mountain in the rain with a conversion van, trailer, and me having to get out (in the rain) and navigate Aaron driving backwards down that hill. Now that people, is something to blog about.

When last I blogged Max was sick with a pretty vicious virus that also claimed Alex and I as victims. I was pretty down about missing another vacation. No big deal, we rescheduled for April. April, a beautiful time of year, a low census week at Disney, out of cold/flu season. You can’t get much better than that. Once again we were starting to get excited and the boys were talking about everything they wanted to do while they were down there. Then exactly one week before we were supposed to leave Max developed a sore throat. We took him to the doctor the next day and they did a viral panel. He had a cold. Not the worst thing he could have had and in the viral options definitely one of the better, but still enough to cancel yet another vacation. We immediately contacted Baking Memories and they were great and very understanding. We watched Max through the week and by the day before we were set to leave Max was still unable to travel. Max’s lungs have struggled to recover from even minor viruses since the adenovirus a few years ago. Ugh, another vacation postponed due to illness. Now we have had to cancel or postpone a lot of vacations over the years, but never the same one twice, that was a new one for us. It was extremely disheartening. Max was very upset, twofold given that that he was feeling crummy and missing vacation.   Heck, we were all very upset. We were really looking forward to our vacation. It is very unusual for Max to get sick so close together. I realize, and we made it very clear to the boys, that in the grand scheme of things a vacation cancellation/postponement is not the end of the world. They, we, lead a very comfortable life. Our boys are very well taken care of medically and emotionally. There are so many other people who need basic necessities that it seems silly to react so poorly to a missed vacation. Even for me this time it was a hard pill to swallow. Alex didn’t say much about it until the day after we were scheduled to leave when suddenly his Mickey Mouse needed oxygen and was sick. He had put Mickey in his own Mickey PJs that he (Alex) had planned to wear in Orlando and had his nurse draw pictures of all the Disney characters. Funny enough when Max started feeling better, so did Mickey. Of course, Aaron had taken leave and we were all sitting around the house waiting for Max’s lungs to catch up when I did a little research on an accessible cabin in the mountains. Max and Alex both have been itching to ride a train and the NC Smoky Mountains around the Asheville area has been on our list of to-dos, so we thought maybe, just maybe, if we could get Max off his bi-pap and feeling good we could sneak away for a few days to enjoy ourselves. We are nothing if not resilient, right? I found a completely accessible cabin just a short distance from the Great Smoky Mountain Railroad and thought, okay let’s do this. Max was doing well Wednesday evening and Thursday was a good day, so I booked the cabin.

Now just a little background….in case you are new to us, or maybe slightly oblivious. We are not fly by the seat of your pants kind of people. We are meticulous planners. I research and plan almost every detail and I start our packing process a week out. There are spreadsheets involved people, spreadsheets! We have to ensure accessibility and parking for all our places to stay and activities. We cannot find items left behind at the local CVS. For us to literally decide one day out that we are going to do something one day out is a big deal for us. To make it actually happen (without Aaron and I killing each other) is a feat of epic proportions. To top it off this is the first time in years we have traveled without a grandparent, nurse, or nanny…just a little unnerving, but we went for it.

Friday morning we packed up our trailer and the boys and headed out. Thankfully, it was only a five hour drive, which is much easier on all of us then the typical 8 hour dry to FL. Unfortunately, road construction lengthened our trip by about an hour and then we had to stop and pick up some groceries. We take the turn to head to our cabin (now keep in mind the only question I asked was can our van and trailer get to the cabin, and they mentioned a gravel driveway). I get a little nervous when our turn off included a large yellow sign with orange flags…

Did I mention that it had now started raining??? Had we made it without traffic we would have had no rain, but not so for us. I am not a fearful person, our lifestyle has helped quite a bit with that, but having grown up in the nice flat land of FL I find the mountains very intimidating. Driving up what turned out to be the side of a mountain in the rain on narrow roads with a large conversion van and trailer was not my idea of a good time. In fact, I prayed very hard the entire time…until we missed our turn off (remember the driveway). At that point I had to get out, in the rain, and navigate Aaron backing up the van and trailer around a slight bend, making sure no cars were coming, so we could get on the “driveway.” The driveway, was indeed gravel and almost half a mile long, a path really with NO space for an oncoming vehicle. Then we break off unto another path with a pretty steep incline. Did I mention the rain??? By this point the praying had stopped and the four-letter words were flying around my brain. I kept my mouth shut, as I knew Aaron was already stressed enough. We arrived at the cabin and unloaded in the rain, yippee. Of course, as soon as the van and boys were unloaded the rain stopped and we could see our most amazing view! This cabin was truly accessible…no adjustments necessary. What a relief! It was quite busy settling in, but lo and behold we managed to get both boys bathed, treated, and in bed before 10. Even Aaron and I made it to bed by 10:30, which is pretty astounding on the first night anywhere for us, especially with all the unloading/unpacking.

It was a good thing we were in bed early, because we had an early morning. I managed to book tickets on the Great Smoky Mountain Railroad for Saturday morning and we had to be there by 9:30am. The drive up the mountain took half an hour, so we knew we needed to be heading down at 9:00. This is a feat on a typical day getting out of the house, on vacation it is nearly impossible, but we did it. Boy, was it worth it! The boys loved their 4.5 hour train ride in an open gondola through the mountains. Hog Heaven for the boys and score for the parents!

This was Tim, the mountain man, who told stories and answered questions on the train. He was highly entertaining. I wish I had pictures of the bluegrass group that came through or video of Alex rocking out to it.

After the train ride we came back to the cabin and relaxed. Bahahahahaha! That wasn’t what happened at all…this is a High vacation, remember! We got back and Max seemed slightly off, so we put his pulse/ox on and his oxygen was hovering around 93 and his heartrate was kind of high. We watched him for a bit and decided to cancel the campfire and roll with a treatment. Aaron was getting Max on his nebulizer when Max started asking for his air and then a cough. I came in the room with Aaron and Max just in time to see Max’s oxygen start diving…93…87…83…76…71. Aaron kept coughing him until his numbers started to come up, which they did. Let me tell you, the ONLY thing more stressful then oxygenation issues at home are oxygenation issues on vacation, and they are magnified when that vacation is at the top of a mountain! Thankfully, Max was much better after that episode and we think it was a residual plug from his illness, but man did it set the tone for our evening. We started getting all of our stuff ready in case we had a rough night and needed to head out first thing in the morning. Another vacation ruined due to SMA. UGH! It was with wonder and awe that Max slept brilliantly (seriously, I only had to turn his 3 times during the night…that is awesome) and his numbers were good, so good in fact…

The next day we headed out to the Smoky Mountains in search of some accessible trails. We were hopeful for a trail with a waterfall, but unfortunately, it was super busy and we couldn’t find a place for Max to access with his chair that had not been completely blocked by a vehicle. We ended up on an accessible trail with a creek and the boys loved going down by the water and skipping rocks in the creek. We came back to the cabin and roasted marshmallows on the fire and made smores. It was grand and completely devoid of oxygenation issues.

For our final day out we headed to Clingman’s Dome, the highest point in the Smoky Mountains and the Cherokee Indian Museum. My idea of heading to Asheville on the hunt for the amazing chocolate place all you people insist on posting pictures of yourselves at, but was immediately shot down. Now, technically Clingman’s isn’t accessible, but it was a smooth paved path (got some intel from a friend on that ahead of time)…of course this sign didn’t slow us down…

But pushing Alex in the jogging stroller sure did! By half way up my calves were burning. Aaron was driving Max’s chair, as this fearful mom (aka sane) wasn’t about to let Max drive right next to a cliff. As you can imagine we made quite the group traversing up the mountain, but we made it! The good news is Max had no breathing issues at the top, as there was also a sign warning people with breathing issues of trouble breathing at the top. Whew.

On the way down, Aaron decided to see how far he could push me before I had a heart attack. He decided to drive Max’s chair with himself standing on the back on the outside part of the path…like near the cliff part. Aaron says at one point he looked back (WHY WAS HE EVEN LOOKING BACK???? HOW DID HE KNOW WHERE HE WAS GOING????) and said I had the most stressed face he had EVER seen me with. Given the number of times I have been stressed due to my husband and children, I cannot begin to imagine how my face actually looked.

After the Dome we headed to Cherokee, NC to get our education on at the Cherokee Indian Museum. The boys (and even Aaron) enjoyed it a lot more than they thought they would. Of course, both boys needed a souvenir, so they left with matching black bears (Alex’s being smaller of course). I am so glad these are the only bears we encountered on our trip.

That evening we were able to get the boys into bed at a decent time and Aaron and I did something we rarely do…watch TV together. Vacation complete.

We headed  home the next day and are now back into the insanity that is our daily lives. I came home to scanning schoolwork, packaging sales and buying groceries. Max had school this morning and OT. Alex had OT and a power chair appointment. No rest for the weary in this house. I can honestly say this was something we all needed. Despite the crazy of the day. I think we are all rejuvenated. Sometimes (ALL THE TIME) you have to trust that things are going to work out for the best.

Peace.

Human Metapneumavirus

Can you say it three times fast? Do you want to say it at all? No, you absolutely do not. This is the virus that has come as an uninvited guest to hang out with us this past week and we would like it to leave...immediately.

Max started with some strange "episodes" last weekend. He was getting overtaken with mucus suddenly, needs to be coughed and then had a high heart rate. Then normal. He was fine. Back to life. We did the normal things, increased treatments, contacted pulmonary and watched. Monday, Tuesday, and Wednesday brought more of the same difficulty with copious mucus production, higher heart rates an general feeling of yuckiness all or just a few hours a day, then fine. We had started him on an antibiotic, thinking a possible bronchitis. That is what it looke like in terms of symptoms. Meanwhile, Alex and I had developed the same symptoms and we're feeling pretty crummy. All of this happening, obviously, while Aaron is away. Then Thursday was a bit tougher. He managed to get up in his chair for a bit, but used his bipap for awhile to get some rest. We weren't really worried about that, because we talked him into his bipap and he took a good nap. All and all, we let like he was handling this illness really well. Aaron was home. I was feeling better. We were pretty optimistic. Then Friday caught us by surprise. Max had a great morning treatment with totally normal numbers and we thought, sweet, we are finally seeing some progress. We tried to get him up in his chair and it was an epic fail. He stated coughing and having trouble breathing. Got him back in bed and he wanted his bipap and his heart rates were higher again. Oddly, his oxygen levels and respiration so we're really good, just the higher heart rates of 140-150. He had a low grade fever, so we gave him some Tylenol and that didn't touch the fever or the heart rates. In fact his heart rates steadily increased all day until the early evening where we were consistently seeing numbers in the 180s. It was at this point we decided to call pulmonary and take him to the ER. A resting heart rate of 160 spells trouble. Got all his stuff ready to go, preparing for an admit to the PICU and headed out. The ER was notified that we were coming, one of the few perks of our lifestyle. Of cours, we get there r are his heart rates go down to the best we have seen all day. They did a chest X-ray, which showed no signs of pneumonia, score. Then they did a viral swab and we were introduced to our new "friend," Human Metapneumavirus. This virus is very similar to RSV, which strikes fear into the heart of all families with kid with weak pulmonary systems. Max had RSV back in 2013 and he ended up in the hospital. Thankfully, his overall health is better than it was then, but still this is very concerning for us. The "cold" symptoms aren't that difficult to manage it is the inflammation that it causes in the lungs that is the issue. It explained why he needed more support respiratory wise while the cold symptoms were subsiding. He is now completely dependent on his bipap. We introduced steroids yesterday to help with the inflammation. Given how he looked at the ER we were able to bring him back home and are trying to battle it out here. Unfortunately, we are also battling belly pain/nausea and that he can't get comfortable to sleep for long periods of time. These are our big strikes against his recovery. If he can't get rest and nourishment then we will fall farther behind and he will lose stamina to continue breathing on his own. Needless to say we are watching very closely right now for signs of respiratory failure. Inflammation is very tricky for Max, as he needs increased treatments, but those treatments tend to aggravate the inflammation, so we are trying to balance those to keep a pneumonia at bay. This virus also comes with sporadic high heart rates and fever, so we generally have a few hours a day of ridiculous heart rates, which makes this all the more fun.

Meanwhile, Alex is holding his own. Thankful that he is able to cough efficiently, he is miserable, but manageable at this point. His biggest problem is vomiting. He gets a coughing spell and throws up, mostly at night. I am so grateful for the gtube, as he doesn't want to eat anything, but at least I can get him food and pedialyte through his tube. We are watching him very closely, as this is definitely the worst illness he has ever had and we don't really know what his limits are.

It goes without saying, but I guess I will say it anyways, that Aaron and I are operating on minimal sleep. I believe last night was the worst. I was up with the boys until 2:30 and Aaron has been up since then. Max and Aaron are both trying to sleep right now, Alex is drinking warm tea and eating crackers and I am providing you all an update. Please pray for rest for all of us, Max's inflammation to decrease, and Alex's symptoms to subside. We are looking at a long week ahead of us.

All of this would be more than enough emotionally, but we are also battling Max's anxiety. With age comes understanding and he knows what it means when he cannot breathe. His fear of losing this battle also comes into play. He just finished a devotion writing assignment for school a few days ago and was so proud of it. His scripture was Numbers 6:24-26, "The Lord bless you and keep you, the Lord makes his face shine upon you and be gracious to you, the Lord turn his face toward you and give you peace." So when he looked at me and asked, "if God loves me and takes care of me why does this happen? Why does He let this happen?" There was no answer that I could give that would provide comfort to a scared 9 year old boy. I just smiled and said, "Of course a God loves you and he is taking care of you. Look at all this equipment we have to battle this illness. Look at all the people around here to care for you. To you this seems like the end of the world. God's world is so much bigger the you could ever imagine." Then I reminded him of Franklin D Roosevelt (who he is currently doing a project on) - "we have nothing to fear but fear itself." He responded, "easy for Franklin to say." And with that I walked out of his room, went for a run, and as I watched the kids of the neighborhood out playing and enjoying life, I cried, because there are no good answers to calm Max's fear, only prayer and acceptance.

Let's talk about urination, shall we?

I thought it was about time I provided an update about Alex and his poor stinkin’ bladder. Many people have asked recently how the little guy is doing and I was beginning to feel like a broken record (for those who even know what a record is). No change. Every day rocking back and forth saying, “ow, ow, it hurts” and every night waking up multiple times basically saying the same thing. The bladder numbing meds they gave us at the ER were completely ineffective. A few days later the pediatrician prescribed Ditropan, a medication used for bladder spasms and no improvement from that either. I mentioned in my last post that he did seem to get some relief from extra hydration, but even that seemed like it wasn’t helping all the time. We finally got in to Urology on January 11^th! First, I have to say I love the Nurse Practitioner in Peds Urology. She is fantastic. She said the two reasons kids have issues like Alex was having were constipation and dehydration, alleviating those takes care of 90% of painful urination cases. She took him off the Ditropan, as it can make constipation and bladder retention worse. She wanted him to have a “video urodynamic study” to check all of his areas. She noticed in our scans from the ER that he had irregular bladder edges and was holding A LOT of urine (funny, at the ER they told me everything looked totally normal – this is the difference in seeing a specialist). Unfortunately, the time table for getting an appointment, as it is a procedure with sedation (thank goodness, because not all facilities do it with sedation) was going to be about 6-8 weeks. Seriously, 6-8 weeks with the all night crying and random painful screaming all day!?! It seemed so unfair that this little guy would not receive relief anytime soon. She told me to increase his fluids even more and call her or email her with any changes or concerns. For some reason, perhaps a bit of trust and faith. I was not disheartened. I really felt, knew, that it wouldn’t take that long to get seen. Sure enough, a few hours later I got a call from scheduling and thanks to Tricare returning the authorization very quickly they were able to schedule Alex for the following Tuesday due to a cancellation. Praise God! Aaron and I took him the following week. As luck would have it the PICU team monitors the sedation for the procedures and Dr. Cochran was rounding. We love Dr. Cochran. He was there with us on some very tough days with Max in the PICU and I will never forget him crying in Max’s room following a failed extubation. So in a way, I feel kind of silly, as the nurse is giving us a rundown on Dr. Cochran and how much we will like him, how good he is, trying to alleviate our fears, I mean she has no idea what we have seen in a hospital and I wasn’t going to get into it and explain this was really no big deal to us. Then the doctor comes in saying, “The Highs, my heroes!” The nurse was like, “oh, I see you already know each other…” It was good catching up. Thankfully, we have been here almost two years and had ZERO PICU stays, pretty much a record for this house. Okay, back to Alex…they did the study which basically consisted of putting a catheter in, draining his bladder (incidentally he had 200ml, almost a cup of urine, in his bladder and had been NPO even fluids for over 2 hours, yikes), then placing another catheter, filling and then emptying the bladder all while watching on x-ray and with leads. The basic gist at the end of the test was overactive bladder with retention. He was indeed having pretty intense spasms and was holding his urine. We met with the urologist afterwards and she placed him on an increased dose of Ditropan and scheduled him for an MRI to see if we could find the cause of the spasms (some have no cause, but she wants to rule out everything). We are still waiting for the MRI, that will be on Feb. 18^th. This will see if there are possibly any growths at the bottom of the spine causing issues for the bladder. In the meantime, there have been a couple of breakthroughs and a bit of a bumpy road. They told us that with the bladder retention it would probably be difficult, if not impossible to potty train. Well, just over a week following the urodynamic study, after a particularly awful night, Alex was literally up all night screaming and would not urinate I typed a long email to the NP at urology basically saying something has to give. We, he cannot live like this. Please try to get our MRI moved up. When Alex woke up I told him he could not get out of his bed until he peed. He refused. Out of utter desperation (never underestimate an exhausted/determined parent) this is what went down,

Me - either go in your diaper or go on the potty!!!

Alex - Can I flush my pee down?

Me - Yes, anything you want!

Alex – Okay I will go on the potty.

With that people, Alex proceeded to urinate on his little potty that we purchased several months ago and Aaron has tried to put in the Goodwill box numerous times. We have tried all sorts of bribery to get him on the potty. Who knew it would only take letting him flush the toilet???

This kid has been virtually pain free for over a week! He will not urinate in his diaper. The only time we have had an issue was when we were running errands and he refused to pee in his diaper, so it looks like I will be taking a port-a-potty for him. Even better, we went back to the urologist for a bladder scan and he only had 30ml in his bladder. A huge improvement. There was concern given the meds he is on to help with the spasms, that it might make the retention worse. Nights are peaceful again! We still plan to go ahead with the MRI to rule out other issues, but if it is clear then we know that it was probably a perfect storm of constipation/dehydration/retention due to fear of pain.

This proves another reason hydration is important. After running Alex’s numbers in our nutrition calculater he was definitely about two cups short a day in fluids. I had not been concerned as he has a cup with water around him most of the day, but after watching him and measuring he wasn’t really drinking much at all. We are now compensating with water boluses via his g-tube and keeping much better track of his fluid intake.

Well, that about sums up our fun for the last several weeks. At one point Aaron and I turned around to Alex and reminded him, “Hey, kid, you are supposed to be the easy one!” Pretty sure he laughed maniacally.

Holiday Mash-Up

Ahh, the holidays. They go by so dang fast, especially when you live in this house. Never a dull moment. A lot has happened in the last two months, so here is a basic mashup in reverse order:

Yes, our Christmas lights just came down, much to the wonder of our neighbors. Aaron and I are attempting to live more liturgically in 2016 and with that means we are celebrating the twelve days of Christmas, meaning it doesn't end until the Epiphany (celebration of Wise Men bringing gifts to Jesus). Our doorbell still plays "We Wish You A Merry Christmas" and we listened to Christmas music long after the secular world is returning to plain old winter. I like it.

On New Year's Day Max informed me that this is the year he will have been around for a whole decade. A decade, for real. I kind of just stood there, mouth agape, as I attempted to process this information. I have had a kid for a whole decade? I have lived with the knowledge of SMA for 9 years? I still feel so new at it - parenting and SMA. Just. Wow. We spent New Years Day quietly indulging in games and movies in our pjs. It was glorious, especially compared to our New Year's Eve, and the rocking party we had, just kidding. Actually Alex and I spent 8 hours at the ER and didn't make it home until almost 9pm on NYE. Not quite the evening I envisioned.

New Year’s Eve, a time of parties, fireworks, adult beverages and food. Unless you are at the ER. Then you are only indulging in the water in Styrofoam cups the nurse was kind enough to bring you and trying to decide if you should eat the protein bar you brought or hold out hope for discharge papers. All of this actually started prior to Christmas with a horrific constipation situation, that was resolved (like kept us home from mass due to collateral damage resolved). Alex began crying everytime he needed to or did urinate (not poop, urinate). We have been back and forth to the pediatrician, had xrays, continued to clean out his bowels (thinking it may somehow be related) and nothing stops the pain. He is fine most of the time, but screams bloody murder when he pees. Finally, I gave up from frustration and exhaustion (he wasn’t sleeping at all at night just crying) and took him to the ER on NYE. Nothing. They couldn’t find one single thing wrong with him. This kid has been cultured, ultrasounded, xrayed, still nothing shows. We are anxiously awaiting his urology appointment on Monday. He has been on two different meds with no help. The only thing that seems to make a difference is two days I have given him tons of extra water via his tube and he sleeps those nights. Dehydration, perhaps?

Now all of this would have been enough on its own except that for just prior to Christmas Alex had a cold and the rest of our household appeared to remain symptom free, until about five days prior to heading to FL for Christmas. Max started with this weird cough and not digesting his food. After two days he seemed normal, except for the digestion and we decided to press with our trip to my parents in FL. Of course, the boys would have been devastated if we canceled. We got to FL on the 23^rd and were very busy settling in and prepping for Christmas. We ended up missing Christmas Eve Mass due to Max acting “off” and coughing a bit again. On Christmas morning we did treatment and got him up to open gifts and he only lasted about 30 minutes. He could not tolerate being up in his chair. We put him back in my parent’s room and he was fine, tried again and he couldn’t handle it. We even tried just laying him on the couch in their living room and he had trouble breathing. Aaron and I made the tough decision to load up and head home, on Christmas, so while my dad made an amazing meal, family stopped by and my mom entertained the boys, Aaron and I loaded the trailer. We ate a late lunch with family and headed out. My awesome parents loaded up in their car and followed us, just in case there was an emergency and my brother and Aunt Tammy and Uncle Greg stayed behind to clean everything up. We got home, uneventfully, around 2am. This was definitely not the Christmas we had envisioned. Thankfully, save one small fever, Max was fine in 48 hours (which was great as we were in full throws of Alex’s stuff, which had been escalating over this time).

Needless to say, we didn't get any really good family pics over our short Christmas visit, but here are some to prove we celebrated:

Of course, no visit would be complete without some donkey time and my parents have added a miniature donkey to their household. The boys named her Lucy.

Now prior to all of this we had quite a surprise on our hands. At the beginning of the year my Aunt Tammy nominated the boys for a dream vacation to Give Kids The World in Orlando with tickets to all the area theme parks via an organization called Baking Memories For Kids. This is a fantastic organization that a man by the name of Frank Squeo started after fighting his own battle with cancer, making a promise, that if he survived his battle he would make it his mission to fund children’s dream vacations. Now, that is all fine and good, we “say” a lot of things when we are in the midst of crisis, but he actually did it! This organization makes and sells chocolate chip cookies to fund these trips. My aunt saw them featured on the Today Show and ran with it. The boys were surprised by Frank via fire truck on December 8^th. It was such a fun day. The boys just loved Frank (and so did we)! A lot of people came out to see the announcement for support and it was covered by all three local news stations. We head down for our trip late February and the boys already set up a dinner date with Frank at T Rex Café. This organization has been such a dream to work with and rely totally on volunteers for the cookie baking. I encourage you to check them out. The only sell in the fall every year and the cookies make great gifts.

Thanksgiving, Aaron’s first one home in three years was a quiet affair. It was just me, Aaron and the boys. We had a good day. We knew lots was in the pipeline for the upcoming weeks, so it was nice to chill out and relax. Here are some pictures from November. The one of Aaron and Alex was taken by our friend Matt on the jet. Below that are some pics from my Friend Josie with Josie Photography. She is just the sweetest!

Happy 9th Birthday Max!

Okay, I know I say this every year, but wow, NINE YEARS OLD (well, I don't say nine, but you know what I mean). Another year, and dare I say, one of his healthiest in a long time. I don't even know another way to express to you what each year means to our family. I see children passing away all the time from SMA and yet, eight years after diagnosis, Max isn't just surviving SMA - he is LIVING with SMA. Yes, we have our challenges, new ones arise all the time, but this is a kid who loves life. Of course, throw in a dash of me with his morbid sense of humor (he can take conversations dark in the flip of a switch) and a pinch of Aaron (for his love of antagonizing) and add a bit of OCD from us both and you have quite a combination on your hands. Oh Max, how you keep us on our toes.

This year we had a first...we actually held a birthday party at our own house. For the last eight years we managed to avoid this type of germ fest, but with two parents in the same town for the first time in a few years we decided we would throw caution to the wind. Before you think we were too crazy...it was outside.

Birthday party ideas are always tough for us. We want it to be something Max can participate in and the other kids will enjoy too. Max doesn't attend many parties, as they are typically not conducive to him in the chair, either they are at a place that he would just sit and watch everyone or at a home that we cannot access. Parties have long been a struggle for me, as they are "in your face" evidence of Max's disability (see also: recess, PE, sporting events, the list goes on). With this in mind we always want Max to have a party that kind of "makes up" for the ones he misses. Funny, how life works. I was never a proponent of large birthday parties and feel that they are a bit much for kids who already have so much, but here I am trying to outdo myself from the year before, every year.

This year we went with the idea of a drive in movie for the kids (now before you think I am creative, I totally stole this idea from my friend Jenna, who did this for her daughter a few months ago). We ordered movie ticket invitations, procured an outdoor movie screen/projector, and saved boxes and begged boxes from our neighbors. I purchased paint and some black paper plates, hotdogs, drinks and cupcakes, oh wait, don't forget the popcorn and there you have it...a drive-in theater. 

Of course, the theme was Pokemon...

Before: My brother, Travis, went ahead and attached all the plates to the cars as "tires."

The kids had a blast painting their cars. It kept them busy the whole first hour.

Aaron and Max surveying the work...

Max getting in his "car." His buddy, Griffin, assisted in painting a Pokemon on the front for him.

My friend, Lourdes, and her family. They were so cute!

Parents enjoyed getting in on the fun. Here is Max's den leader from Cub Scouts, and his son, Zack.

Of course, little brother wanted a Batmobile...

Uncle T-love, so excited to be at a birthday party!

Now this is where the party got weird...the kids finished painting and I had them move their boxes to the "viewing area." They asked if they could eat in their boxes. All of the sudden 13 kids got their food, jumped in their boxes and didn't emerge for the rest of the evening. Many brought blankets and after eating snuggled in for the movie. My mom made popcorn and we delivered more drinks and bags of popcorn to the kids for the whole movie. We, as parents, just stood back in wonder.

We even did the singing and cupcakes right in the boxes (frankly by that point I was nervous to invite them out for fear we wouldn't get them back in).

Now, just to show you what a year Max has had. He has recently been able to blow out candles. FOR REAL. Okay, it is just one candle and very close to him (probably dangerously close, being fire and all), but still. This is a TOTALLY new ability for him. He had NEVER done this until a few months ago.

They watched the movie Underdog, which I find completely painful, but apparently is quite a hit in the 8-9 year old crowd.

No really, that ^^^^^^ is how they stayed all evening!

I would like to say I got some good pictures of the adults, but we were all freezing, given that the weather turned unusually cold that day. All the shots would have been blurry.

Of course, no nine year old birthday would be complete without presents. In recent years we have asked Max to think of donations his friends can make in honor of his birthday, instead of gifts for him. This year, much to my surprise, Max actually chose a human organization vs. his typical animal one. He asked for books for Lowcountry Orphan Relief. Our neighbor volunteers there and he remembered her saying that they like to give books with each set of clothes. Many of these kids have only the clothes they are wearing when they go into the foster care system or have had to flee with their mothers to a domestic violence shelter. He collected 52 books for the organization. What a blessing that will be for children in such a frightening situation.

Don't worry, Max still got more than enough from his very generous family. Giftcards abound! Such a smile on this kid with his new Pokemon Handbook from Grandma And Grandpa...

After it was all said and done, I would call the party a success and even Aaron said it wasn't as stressful as he thought it would be. Of course, help from my parents and brother in the background made that all possible. My dad took pictures, my dad and brother did a lot of heavy lifting getting things in place and my mom worked in the kitchen prepping popcorn bags and getting food ready to be taken outside. I can't forget all the parents who helped clean up during and after the party too. Thank you so much!

Meanwhile, I think Aaron is now sold on the outdoor projector idea for family movie nights...

Oh, and you noticed correctly if you saw Christmas lights on the first picture. This is the first holiday season Aaron has been home for in a few years. He is all in, in terms of decorating and celebrating. 

 

Washington DC and Halloween

There is really no such thing as vacation for us, we’ll just call them “trips.” I think this is accurate for most families of young kids, but with us it brings on a whole new meaning. The packing and planning takes weeks, insuring all supplies are on hand and everywhere we plan to stay and everything we plan to do is accessible. Then, just for fun, I have the bright idea to schedule Max’s new power chair change over for two days before we leave. Seriously, you would think I was new at this. In the end, we had a successful trip, learned a lot and plan to return for more, as we didn’t even come close to experiencing everything we wanted to. Grab a cup of coffee and sit back, this post is probably going to be long…

Ahhh, the new power chair. We have waited months for you (even after insurance approval). With two failed attempts because of inadequate parts, a snafu with transporting such a new chair, and scheduling the final change over date was scheduled for October 14, a mere two days before heading to Washington, DC. The last time we had an appointment like this was when Max was about 3 years old and he got his first power chair. It was intense and mentally exhausting, for everyone. The day before the appointment, my lovely husband was like, “do you think this was a good idea???” I was like, “no, no, I don’t, what was I thinking?!?!?!” We were in clinic for 6 solid hours and all of that time was merely to work on positioning. Max was miserable and very vocal, because he had nothing to do. The Permobil guy was holding his iPad hostage getting it to link up correctly to the chair (yes, you read correctly…his iPad connects with his chair, so that he can use his chair controls to work the iPad…YAY!) For Max, me, the PT, and the chair guy, along with Nurse Gina it was holding different parts of his body for hours trying to get each part in the best position for him. Yes, it stunk. We knew we had made good progress when his smile returned and he finally said he was comfortable. By the time we left he was able to drive, but not with great accuracy, which was very frustrating for him. Chair guy and I reconvened at the house the following day to work on computer access, fine tune some other electronic issues and check everything out. The poor guy was here for 8 hours. In the midst of this we were trying to do schoolwork, pack for the trip, and prep food. It was a long day for everyone, but at the end of the day, Max could access both his iPad and his computer. Success.

This chair is pretty awesome. It has more bells and whistles on it then I could even tell you right now. With Max’s old chair, Aaron and I knew it very well (heck, Max knew it very well). We had that model of chair for over 5 years and had repaired and troubleshoot like you wouldn’t believe. Parents, become power chair experts, because we know when the chair has trouble you can’t wait for days or weeks to see the power chair guy. In our case he only comes to Charleston twice a month. Yes, there are a couple of people here who can help, but they are not nearly as well versed on the complexity of Max’s chair and they didn’t install the electronics, so it is a bit of a learning curve for them too. Now, we have a brand new chair with a brand new electronic system and EVERYONE is learning. Some of the best features (to us) aren’t even the electronics. For instance, this chair tilts (or leans) back without raising up, which means that speed is not cut in half when he tilts. Previously, if Max was fatigued or going over bumpy terrain and needed to lean back, as a safety feature, the chair reduced speed and there was no way to bypass this. Now, he can simply lean back and continue at his usual pace (I can’t tell you how huge this was for traversing the streets of DC). Besides, iPad access, there is also a USB charging port (YAY for mommy and her phone) and easy attendant access for speed increases and decreases. The display for Max includes the time and his speed. Currently, the chair goes to 3.8 miles per hour. As he gets better with driving it we plan to increase it a bit. Given that his initials are MPH he loves to watch his speed. The shocks are also better and it handles SO WELL. 

With all of that on our plate, we headed to Washington, DC. I mean that was a smart decision. We decided to break the drive up into two days, which worked well, except for a few things. We stopped for the night at a Fairfield In and Suites and it was great (side note: They only allow service animals. Hotels that allow pets are getting way more common place and the last time we stayed at one both boys had respiratory issues while we were there. I don’t need that additional stress in our lives.). We were able to get a ground floor suite, double score. This is awesome, right? Well, until about 10pm when Alex started throwing up. What mom doesn’t love to sleep next to vomit? Then we get up in the morning, with very little sleep under our belts to see that Max’s feed pump has not feed him for the last 5 hours or so. This is not the start to a family trip we were hoping for. We finally get on the road around 11am, scratching our plans to head to Thomas Jefferson’s house and instead opting for George Washington’s home. Alex proceeds to throw up enroute (congrats to Aaron for packing towels in the van). The poor kid was miserable. We are relatively sure the little guy has motion sickness. Definitely, medicating on trips from now on. We get to Mt. Vernon to see there is absolutely NO PARKING for our van and trailer. In their defense there is a good amount of RV parking, so in theory we should have had space, but in reality regular old cars filled those spaces (forget the abundance of empty regular spots available). Needless, to say we pressed on to DC with no founding fathers’ homes under our belts.

Now this was our first Homeaway/VRBO experience. We rented a short term apartment in downtown DC. I have to say we will definitely do this again. Once again, it was brought on by the need for space without animals. The leasing agency I worked with was very good about helping with questions, like where to park a high top van and trailer in DC (FYI – there is not a preponderance of parking for vehicles like this, so the assistance was appreciated). If you could have seen the look on the lady’s face when we pulled into the loading zone outside the building. Hey lady, you walk your dog to the same 1 square foot patch of grass to pee multiple times a day and you give me that look? For real. Ms. Robin was there to meet us, having flown in from Pensacola to enjoy DC with us (read: help Aaron and I maintain our sanity). That was worth it just in the loading and unloading process, as I had to sit with the van while she took the boys upstairs and Aaron took multiple loads to our home for the week. This is no small task. The apartment was fantastic. It was very clean and felt very secure. You needed the FOB to access the building and the elevator. It was a bit sterile, but quiet, and the apartment was the perfect size for us. I can’t even tell you how much we loved this place! It was just plain comfortable.

We set out on our adventures the following day. Max had been very meticulous in letting us know exactly what he wanted to do and he and Aaron had spent a lot of time looking at the map and researching places. This basically means I planned all our days’ enroute. You can’t leave details like this to the amateurs. We spent our first day at the Smithsonian Museum of Natural History. Both of the boys loved it.

They really loved looking at the elephant below:

Max and Ms. Robin running from the T Rex!

We were there for well over 4 hours and didn’t even scratch the surface on all there was to see. We did learn that Alex needed to be in his stroller vs. his chair. His driving was great, but he still melts down a bit in the afternoon, which is infinitely more difficult to deal with in a power chair. He is in that weird no nap, but still cranky phase. Monday, we headed to the American History Museum and the Air and Space Museum.

Max for President.

Alex and Aaron are running as well, because you have to do EVERYTHING big brother does.

This is as close as we got to the Capitol. Notice Alex's face, it is a recurring theme in family pics.

Tuesday, was a bit warmer out and we did A TON of outdoor sites. This was probably our longest and busiest day. We managed to see the White House, Lincoln Memorial, WWII Memorial, Vietnam Memorial, and the Holocaust Museum. We missed the last tour at the Bureau of Engraving and Printing (which we have heard is not to be missed) by about five minutes, but still learned quite a bit in their gift shop area which was like its own mini history of money lesson. Phew, we were all exhausted at the end of that day.

Hoping to spot the President.

Seriously, this was a great time to head to DC. The weather was awesome and there were really no crowds at all. I highly recommend it.

This is how excited Alex was to be at the Lincoln Memorial...

Forget arguably one of our best presidents...there are HORSES HERE!

The day before we head home we always try to take it a bit easier, so we did the Spy Museum, so fun and very interesting! You get a cover identity and take quizzes along the way to see how well you remember your mission, all while seeing some cool stuff and learning about really cool people. We also went to the Smithsonian Art Museum, not a favorite of the boys, but Ms. Robin and I enjoyed it. No White House or Capitol tour this time, but it is definitely on our list for next time.  I would like both boys a bit older before we do that.

My overall take away and best suggestions…check out the schedule for the children’s events at the museums. The Air and Space had an awesome presentation on flight, I mean it was seriously fantastic and even the adults learned quite a bit. The Natural History Museum had a great presentation with an uncooperative tarantula, which the kids also enjoyed. We just happened across these, had we checked the schedule when we got to the museum who knows what else we could have done. The Holocaust Museum also had a really well done area for younger kids to learn about the devastation of Hitler’s Germany. Max and I walked through it and it was perfect for his age group.

DC, despite the parking is pretty handicap friendly (the story would have changed if it had rained a lot, since we walked everywhere). There were only a few times we had to negotiate the ending of sidewalks, which is a win. The museums (except the art museum) had family/handicap restrooms that we could get the boys out in and lay them down, which meant fewer trips back to the apartment mid-day. This was the only way we were able to see as much as we did. If we were having to head back to the hotel every time the boys needed out of their chairs it would have cut our sightseeing in half. As a side note, if you are a single person visiting a restroom, go the regular ones. I can’t tell you how many times we saw one individual come out of those rooms. We spent a lot of time waiting to use those, as families take some time in their (but hey that is the purpose). It was a bit annoying when you would see one guy come out of the room. The apartment was the way to go, cleaner, larger, and more comfy. We had dinner delivered a couple of the nights, which was great. Had I planned a bit better I would have hit the grocery the first day and cooked, which I think would have been easier given the time it took us to decide on take out each day. Also, yes the Smithsonian is free, but they make up for that at the cafeteria. It ran about $50 for lunch every day for three adults and a kid, ouch. Plan accordingly, because there is little on the cheaper front anywhere near the National Mall. Well, that concludes my “professional” evaluation of Washington, DC.

We are back home and back in our groove, but still enduring some technology problems. I am surprised I am not having technology nightmares at night. Max didn’t do a ton of driving in DC, because his accuracy wasn’t awesome and he was getting very frustrated. Since we have been home Aaron has done some serious adjustments and the driving is so much better! We are definitely still fine tuning and making constant adjustments and Max is getting use to his new wheels and the increased “footprint” he has, or as he likes to say, “more junk in the trunk.” The more frustrating part has been the technology portion, as his computer access went out last Saturday, so we had to ship out his electronics, which means no computer access for Max. This is a perfect time to work on his iPad skills, but also puts a damper on his ability to do his schoolwork independently. Have I used the word frustrating yet???? We received the computer boxes back Friday. They told us they worked perfectly, which is strange because they still didn’t work when we hooked them back up. Aaron spent another two hours yesterday morning trying to troubleshoot the exact issue. It turns out it was a bad cable. The strange part is that it is the cable we sent them, so it should have been giving them trouble too. Hmmm. Combine this with an ongoing struggle with the school district regarding Max’s laptop and there have been a few days that my head has wanted to explode at the end of the day. The end of the weekend has Max having computer access, and a school computer that has what we need on it, yay. Unfortunately, there is some other issue with the school laptop that keeps making it shut down and it is not responsive to key strokes at all, so it is virtually no good to Max.

Ahh, but yesterday was Halloween and we celebrated as a family of four!!! This is the first Halloween Aaron has been home in three years. Max was Ash Ketchum from Pokemon and Alex was Batman (specifically the 1960’’s Adam West one). Aaron, well, Aaron was himself. I have to say these kids are after our own hearts. They were so excited to go trick or treating (Alex has been asking if today was Halloween for the last month), but after an hour out and less than half the neighborhood they were both bored and ready to go home, which was fine with us.  I can’t tell you how much easier life is with dos parental units available. The whole experience was far less stressful. Aaron (and the rest of us) are so excited to enjoy the whole holiday season together.

Well, I would say that concludes our whirlwind of events, but in the next few weeks we have the MDA Walk at the Riverdogs Stadium and Max’s Birthday! They busy never ends!

Happy Feast of All Saints!

Places to be, things to do has been our motto for the last few weeks. We returned from vacation to jump right into school, work, and activities. I will save you from reading some of our less fun shenanigans, like our van overheating after work was completed by the dealership (it’s all good now) and will focus on the great number of blessings we have experienced in the last few weeks.

The Go Miller Go Cure SMA 5k was a great success, at almost $50K in its second year. We were excited to see so many of our fellow SMA families and the great turnout of support. Personally, my parents, Aunt Mary, grandmother (Busia), Aunt Kathy, and cousin Logan were able to make their way to Charleston for the weekend’s festivities. Ten kids from the Summerville Catholic cross country team participated, as well as Max’s best bud Keegan. The weather/radar looked very scary with a HUGE mass of thunderstorms threatening and it even started to rain on us enroute, not a good sign for the boys in their power chairs. Max prayed the whole way on the interstate that the rain would pass and it did. The whole mass went just below us and it was overcast and cool the whole morning. Another benefit of both parents…usually weather like this would have put a halt to the whole thing for us, but with dual parent coverage we risked it and it all worked out. Now the boys’ chairs didn’t fare quite so well, as the beginning of the 5k was VERY muddy. Their tires were completely full of mud, but they had a great time and anyone who watched them close in on the finish line got a great show as they continually tried to cut each other off. Aaron spent the first hour home from the walk cleaning the chairs, so they could come in the house. It was a full afternoon of family and friends as we chatted and the boys played, exhausting, but fun.

Sunday morning was the event we have waited months for…Max’s First Holy Communion. Max’s namesake, St. Maximilian Kolbe, had this to say, “If angels could be jealous of men, they would be so for one reason: Holy Communion.” As Catholics, we believe that Jesus Christ is truly present in the Eucharist (Communion), not a symbol or representation…His body and blood. Now I could give you lots of references with which to back this (John 6, for instance), but my blog just really isn’t about that. Suffice it to say, for us, participation in this sacrament is a huge and momentous occasion. For obvious reasons, Max not being able to swallow effectively, challenges for consuming communion was a question for us, but we wanted Max to participate in our faith as fully as possible. We began conversations with our parish priests about two years ago, and who would have thought that our Church had made accommodations for such instances. For Max, they purchased a spoon from the same place they get the other instruments for communion (chalices…). The priest dips the spoon in the wine/blood and drops the tiniest drop in Max’s mouth. Just like that, he is participating in the sacrament. It was an exciting moment for us, especially after he missed making his First Holy Communion with his friends back in May.  Max was initially kind of freaked out by the whole idea, but after doing his First Reconciliation (confession), he was super excited. After receiving communion his response was, “I’ll get used to it.” I never thought to prepare him for the taste of the wine.

Max's sin-free selfie following confession:

Our blessings continued through the week as we received good news on a few different fronts.

After being told a couple of weeks ago that nursing through Medicaid was denied, we found out yesterday it was approved. A little backstory: Since we have opted to have Max attend a private school the public school district is under no obligation to provide a nurse to attend school (obviously). For us, it was a way that the school district could “hold us hostage” in the system that was not working for Max. Unfortunately, our nursing care through Tricare is great, but does not allow for the patient to leave the home with a nurse, all care must take place in the home. Not awesome for any kind of quality of life if you ask me. Well, Medicaid does allow for nurses to leave the home with patients for quality of life excursions. The problem was that Medicaid would not provide any nursing if you received it from private insurance. I decided to argue that not providing care outside of the home was a denial of nursing benefits, so Medicaid could provide hours for when Max was out of the house. Our case manager didn’t think it would work, or at least had never had anyone question it. My thought, was what I have to lose in asking. We wrote letters, lots of letters. It took a few months and ended in a denial. Ugh. We were going to have to move to the appeal process. In the midst of this, I really began to question whether I had done the right thing. Had I gotten myself and Max roped into a situation that we could not keep up with? Max attending school with his mom for the foreseeable future. Me missing out on fun time with the boys because I am at school all day with Max and running around like crazy when we got home. Max and I spending way too much time together and becoming increasingly frustrated with each other. My other fear being consistently uprooting him trying to find a better solution. It had been the subject of much prayer. I reached out to the case manager again to find out why we had not received our denial letter and the craziest thing happened. Apparently, someone accidently hit approved instead of denied, which made our package run its way further up the ladder and upon review by the director for the waiver it was APPROVED. WHAT???? If that isn’t Divine Intervention, then I don’t know what is. There are still some details to iron out (such as the nursing company billing person not understanding how to bill for this and giving us tremendous grief, because “this isn’t how they normally do things” thereby trying to hold this whole thing up because heaven forbid she has to enter a different billing code) in preparing our nurse to attend school and other out of the house events, but it is nice to know we are on the right path.

On the Alexander front we had his yearly allergy testing done about two weeks ago and received the results on Thursday. Thankfully, his egg allergy has reduced to the point that we are going to do a “food challenge” in the doctor’s office with product that has egg as an ingredient (e.g. cookies, cake, bread with egg wash). If all goes well he can have these added to his diet. To be honest, it isn’t so much about adding to his diet, as not being fearful of the things he consumes, like always having to verify that the pasta doesn’t have egg as an ingredient, because many do and try asking a server about that. We will still be reading labels carefully, as he is still allergic, although it also decreased a bit, to peanuts, cashew, and pistachios. A side effect of my label reading means I have unintentionally become more knowledgeable of all the junk put into our food and had changed many of my purchasing habits.

We are still in the midst of chair transfer, as we wait on some final details of Max’s chair. It feels like it is taking forever, but at the end of this month everything should be in place to fully switch him over to the new chair. We were able to mess with it a week or so ago and I am so excited for his new ride. Being Max, he is sad about giving his old chair away, but once the switch is complete he is going to LOVE it. Some of the bells and whistles are going to make life a bit easier for him.

This past weekend Aaron and I were able to get dressed up and attend an event for his work on the Yorktown here in Charleston. We are terrible at getting pictures, but here are a couple from the event.

Max is looking forward to our next family trip in great anticipation…he has been checking out maps, planning museum excursions and researching every facet of the apartment we are renting in Washington, DC. I can’t wait to share our experiences from there.

Also, ‘tis the season for 5ks! The Carolina Children’s Charity 5k is this weekend and due to prior engagements our family will not be able to attend, but we encourage people to make a donation to this fantastic organization. CCC focuses on providing quality of life items for kids right here in the Lowcountry! We have been fortunate to be the recipients of a swing when Max was much younger and some assistance with our first modified van purchase. Here is the link:

 http://www.eventbrite.com/e/12th-annual-carolina-childrens-charity-5k-run-family-fun-walk-registration-17348026414

We are hoping to get a team together for the MDA Muscle Walk on November 8^th in celebration of Max’s 9^th birthday! More to come on that soon!

A family style end of summer

Well, summer is quickly drawing to a close, but for us, this is exciting! After 96 days (but who is counting), Aaron is home! He has now completed a much needed goal of 300 overseas days in the last 13 months. It is such a relief to have this in the rearview mirror. Yes, he will still be traveling for work, but doing the more typical trips versus the long absences. We are excited about adjusting a bit more of a routine (I hear the other spouses laughing hysterically). Of course, the boys are ABSOLUTELY THRILLED to have daddy back and once again I have barely heard "mommy" uttered in days.

His first power chair excursion to Target to spend birthday giftcards! He did amazing. I told Max later, that I didn't have to call out Alex's name nearly as much as I had to call Max.

Aaron returned just in time to see Max off to his first day of THIRD GRADE. I just can't believe we have a third grader, this seemed like only yesterday we were given Max's diagnosis and our dreams of a typical childhood were completely it the window. The thought of school was beyond anything we could comprehend based on the diagnosis. Now here we are. Max is over 4 feet tall, wearing adult glasses, maturing (read: talking back, being snarky). He is heading into third grade with almost the exact same class as last year and feeling very comfortable at Summerville Catholic School. Another way I know Max is getting older, the idea of school is no longer awesome. He has fun when he gets there, but the excitement of math and writing just isn't happening. I, on the other hand, am so excited about this year. I am loving his teacher and it's great being back with a super fun group of kids. I do find myself becoming increasingly frustrated with his complaints, though. I think I take it very personally because I work so hard to make sure he gets an appropriate education. I mean for the "average" parent attending school (from my perspective) is plug and play. For us, I have sat in countless meetings, worried about scenarios, tested accessibility, learned technology, AND I attend with him. Moms of homeschoolers I seriously don't know how you could even tolerate one ounce of complaining! I think one of the reasons I get so frustrated is that I take those complaints personally. My typical response is that learning is a privilege not afforded to everyone in this world, especially such a good education. I also tell him it can't be boring because he hasn't mastered it yet...he is still learning. I am hopeful we will get some Medicaid hour to send a nurse to school with Max, but even if it doesn't happen at least Aaron is home, which means that there is another set of hands around the house (It's great having a support system on the same continent as myself. Read: hands me a glass of wine as I walk in the door). UPDATE: Medicaid denied the nursing, so we are moving to an appeals process, ugh.

We had new chairapalooza a few weeks ago and boy where there a lot of wheels involved. There have been some major developments. Alex now has a small manual wheelchair that he loves. His strength has been very impressive and this is the perfect age appropriate solution for small excursions or around the house. He has great proficieny with his power chair, but he loves this chair. My personal favorite use for his manual chair when he grabs Max's chair backpack and rolls around behind him asking him questions. Is it weird that I find his annoying little brother habits so enjoyable, perhaps a taste of normalcy? They also captured a mold for a new custom molded back brace, so that Alex doesn't have to wear his back brace in the chair. Now Max's new chairs present some pretty unique issues that need to be resolved. We are excited about Max's transition to his new power chair, because Max in his current chair resembles a snail busting out of its shell. Max has grown so much in the last year! He is getting the new Permobil F3, so new in fact, Easy Lock, which makes the locking system for chairs in vehicles (how Max's current chair locks in versus the more typical tie downs) is still developing the bolt for the F3. Oops. Unfortunately, we are using many of the electronics and parts from his old chair, so we can't move him to his new chair until he can be transported in it. It looks like we will have to make some modifications to the van, which we have been putting off for a while now (mostly until Aaron got home). Max's new manual chair is workable right now, but we are going to do some foam molds to make it more comfortable for him, due to the curve in his spine. Our hope is that this will be a viable option for trails and busy theme parks, places where power leaves him at a major disadvantage.

We headed to Florida for a week soon after Aaron's return. It is hard to believe that it has been a year since the boys and I were down there. Of course, all the usual activities happened, but his time Aaron even got to participate. Lots of tending to the animals, pool time and playing. My Uncle Greg and Aunt Tammy took us all out on their boat, which was awesome and we got some good beach time in too. The boys loved it and enjoyed the dolphin watching that came along with the boat ride. Of course, it goes without saying that they loved going fast in the boat. Our last evening there we had the opportunity to go to a sea turtle nest excavation. That was pretty incredible! The volunteers found three live baby sea turtles still in the nest that they were able to help get to the water.

 

We headed home on Wednesday and because I am a slave to our schedule and possibly a masochist, Max and I headed to school on Thursday. Thursday evening Aaron and I headed to downtown Charleston for a fancy post-deployment dinner with friends. It was divine. Now we are settling into a weekend of "normal," plans include yard work, shopping for fall décor (this is the first fall/winter Aaron has been home in 3 years), and going to mass as a family. Surprise for Max later, as we head to confession in preparation for his First Holy Communion next weekend.

A little hangout time at the ministry expo at church.

There is still time to join our team, the High Rollers, for the Go Miller Go Cure SMA 5k next Saturday, Sept. 12th. We are stoked to see our SMA family and hang out! Follow the link below to join and/or donate! Max's First Communion will be Sunday, Sept. 13th at the 10:45 mass at St. Theresa the Little Flower. Prayers please, that we ALL maintain our health for next weekend (and always, really).

http://events.curesma.org/site/TR/Events/General/148449863?pg=team&fr_id=1571&team_id=1910

 

Happy 3rd Birthday Alex!!!

It is hard to believe that it has been three whole years since Alex made his debut! He is the silliest, goofiest, most lovable kiddo we could have ever imagined. He is also, thanks to the wonderful 3s...the most stubborn, defiant little screamer too. In spite of all that, we have decided to keep him.

No purchased cake for this kid...a combined effort of my mom and I and we created an egg free construction cake! It's been a long time since she broke out the cake decorating supplies. Of course, Alex still won't eat it, but he has licked it a bit and taken tiny bites (his own piece, not the whole thing), which is an improvement. The poor kid did try to take a larger, still small, but a decent amount on the fork, bite and gagged. Perhaps he isn't a fan of chocolate...no, not possible, not with me as his mom, that would be blasphemy. Check out his nice tattoo...

This kid has been talking about his birthday for weeks now. It's funny, Max doesn't pay much attention to his birthday, I mean, he gets excited about it, but doesn't really focus on it. Alex has been tunnel vision for a while now. All this kid has asked for was a kitchen set. He wants to cook with me. Everyday for the last month he says, "I will get my kitchen set for my birthday." And so it goes, he received his kitchen set from mommy and daddy with supplies from Grandma and Grandpa (chef's hat, apron, cooking set, pot holders). I was so grateful to find a set that he could sit in front of, instead of stand, and move about on his own!

Of course, Alex is also a construction worker at heart, so he was happy to complete some demo work on his cake...

This isn't a big deal to most people, but a lot of kids with SMA (including Max) do not have enough breath support to blow out their birthday candles, so it is especially bittersweet for us that Alex is strong enough, but a reminder that Max is not. A child should be able to blow out their own candles.

I just love watching these two interact. They are working together to put together an Alphabet Train puzzle. Max is trying to teach Alex to recognize the letters.

Thank you for all the sweet birthday wishes and gifts for Alex. He is thoroughly enjoying himself!

Peace.