The fact that I am beginning to type this blog post about our most recent “vacation” during a rainstorm when supposedly there is only a 10% chance of rain today, makes it incredibly appropriate. Aaron and I can honestly say we are about ready to give up on vacations. This is the third year in a row that we attempted to vacation on the first week of May and the third year in a row that NOTHING went as expected. Now, seriously, we thought we had wised up. The last two years we attempted to go to Charleston and both times it was a miserable experience once resulting in a hospital stay and medical flight home and last year we managed to make it as far as Tallahassee before Max aspirated and had arguably one of his worst illnesses we ever managed at home. This year we decided to stick close to home, literally, with my parents getting a condo on Perdido Key (incidentally, for other SMA/disabled families the location where we were at was incredibly handicap friendly and spacious). I swear Perdido Key is the best kept secret of NW FL (besides all of the mullets and 1986 IROC-Z Camaros), the beaches are awesome and much quieter than its “touristy” counterparts. It is perfect for relaxing on the beach.
Well, Alexander began our vacation last Saturday with a runny nose, so Aaron and I took lots of precautions thinking he had come down with his first cold, although it appears he may have had an allergy to whatever occurred on having our carpets cleaned and possibly some teething. He improved on Sunday and we managed to head out to the condo for a little pool time. Our plan was to “move” out to the condo Monday evening and stay for the rest of the week. Well, on Monday morning Max woke up with high heart rates and low oxygen. I have to say I was a little bitter. Max (and all of us really) had been looking forward to “condo week” for months and this was not a good start. Thankfully, Max’s illness was minor, but Aaron and I really were off our game. We finally figured everything out on Tuesday evening when Ms. Robin discovered she had strep throat. I cannot describe the chaos and how Aaron and I went back and forth on what was going on…and can I say Max was very little help as he didn’t let on that his throat was hurting until we point blank asked him. Tuesday and Wednesday were spent at home working on Max.
Thursday things finally started looking up with a pretty normal day, thankfully, as Max was one of 48 students (one from each school) nominated for Cox Cable’s Inspirational Student Hero Awards. We went to a reception and awards ceremony at the University of West Florida. It really was an awesome experience. A person, mostly their teachers, got up to present each student and tell about what made them inspirational. The stories were heartbreaking and uplifting, from medical trials of all kinds, to one 15 year old who was abused by a “guardian” and became pregnant at 14, yet kept the baby and was completing middle school on time (not a dry eye in the house on that one). In typical Max fashion, as most kids stood bashfully next to the podium Max drove all over the stage and insisted on speaking for himself. Poor Mrs. Madison felt so bad that she couldn’t get the microphone down for him. If you want to check out the video click on the link below and for Max, specifically, go to about minute 33.
http://www.youtube.com/watch?v=ZVb8E3G6ZNc&feature=em-share_video_user
On Friday we decided to pack up our stuff and salvage what is left of “Condo Week.” Max was doing much better and we wanted to get just a little bit of time in (and we promised him that he could stay the night). Well, we made it through an uneventful night, but the next morning he ended up having a desat into the low 80s and was really struggling with a some secretions. We think it was some sinus drainage and allergy issues, because after we did a hard core treatment he was much better. So here we are attempting to pack all our stuff up during the treatment to get Max back home, however as our luck would have it we actually left the van at home so we could commute back and forth with the car to save gas. So I go downstairs to start loading the car to head home and change vehicles. Well, there is a guy vacuuming the atrium (who I really didn’t think was paying attention to me or anyone else for that matter). He sees me take a load down to the car, move the car up under the awning and get in the elevator to go back upstairs. When I get up there Max is doing remarkably better and Aaron says that we won’t hurry home, let’s just see how he does, because of course Max was devastated that we were about to pack up and head home. I head back downstairs, move the car back and unload what I had put in and went to get back on the elevator. Well, it just so happens that the guy was now on the elevator too and he just gives me the oddest look and says, “were you just practicing?” I must have looked like I was some crazy person, but rather than get into the whole thing I just say, “you can never be too prepared.” Well, we attempted going to the beach later that morning and after fighting the gusty wind for about 45 minutes, we finally called it quits, packed up and settled for some time in the indoor pool. We headed home that night concerned that it was something at the condo causing Max’s problem. We go back out on Sunday, attempting the beach once again, to no avail, as the wind drives us off the beach once again. We even tried to go to the sea wall on base to fish before my parents headed back to PC and it was like being in a wind tunnel. I truly believe we get an “E” for effort as Aaron and I repeatedly tried to persevere though the struggles of the week and do something fun for the boys and just couldn’t make it happen. By the time Monday rolled around it felt so good to be back in our normal routine. I was sick of packing/unpacking/packing/unpacking…I swear we are the king and queen of non-vacations.
Of course, last week was incredibly busy. Like most people vacations take planning and schedule shifting, for us it is pretty intense. We have to make sure that all our supplies are shipped appropriately so we don’t have boxes sitting on our porch and that we don’t run out mid-trip. We also have to adjust therapies and doctor appointments, not so mention nursing schedules. Combine that with all the basic household stuff and packing via an excel spreadsheet and we are exhausted before ever hitting the road. I know they say family vacations are not relaxing for parents, and it is especially true for us given that when we travel we don’t have the benefit of our nurses to help out.
Well, Monday went well and it was so good to be back in our routine…then came Tuesday or as I like to call it, the end of my rope. Nurse Robin (aka school nurse) had a family emergency and needed to leave immediately for Texas, not one, but three back-up nurses were unable to come in. I had an appointment in the morning and no food in the house as we were in some desperate need of groceries. I also had no van, because of the errands Aaron had left me the car and was in the air. I was done. This was in addition to one of our night nurses being unable to work due to a licensing issue, which has still not been resolved two weeks later. After I pulled myself together the day wasn’t so bad and we managed to make it through the rest of the week. In the grand scheme of things it all worked out, it just required a lot of reorganizing of my mental schedule which, let’s face it, is my biggest issue.
Now, last week, yep, not gonna lie it took over two weeks for me to write this blog post. Well, back to last week…Aaron takes the van to work, so that I can run errands and it gets hit in the parking lot. Now let’s face it if you can’t see our vehicle you may be legally blind and shouldn’t be driving, but that is a whole other story. Turns out the person that hit the van was driving a government vehicle. I could bore you with all the details, but let me sum it up for you, DO NOT LET YOUR VEHICLE GET HIS BY A GOVERNEMENT VEHICLE! Aaron spent a ridiculous amount of time trying to sort out the reimbursement process and it wasn’t even his fault, it was in a parking space in a parking lot at work, not sure how to prevent this issue, but I guarantee you that this will not be resolved within the next two months. Thank goodness it is cosmetic and doesn’t affect the operation of the lift. We have to get two different price quotes on the repair (cause you know so many places are able to fix a van of our size, not to mention that the front bumper has to be completely replaced and that can only be with parts from the conversion company). Then there is the 8 pages of paperwork Aaron has to fill out and submit and apparently it takes about two months for the reimbursement to be approved. Not to mention when it actually does get approved we have to find a three day time period where you know, we don’t actually need to transport Max anywhere…yea right, so irritating.
Last week was not without its successes. After months of discussions and planning, Ride Designs (who makes Max’s custom molded back brace) sent a couple of guys down to make a mold for Max’s new brace. The last one we had done was well over two years ago and the poor kid has grown so much that it is way too small. Below is a picture of Max sitting up for the mold. It will probably take about two months to get and we are counting down, his back looked so much better and his head control was awesome. We are also getting him a new seat for his chair that isn’t custom molded, but will mold more so to his bottom for increased comfort. We were also finally able to get some new head mounts and head positioning equipment. Aaron and I were really sick of “power chair maintenance” every day. The screws on his other/old piece were worn out and the screws were all stripped. It was becoming a constant battle. It has been so nice the last few days actually having the head mount stay where we place it. The problem now is waiting for the new back support to get a straighter back, so that is head will be more centered.
Well, I think that is about all the update I (or you for that matter) could handle. It has taken me no less than six times sitting down to write this before it finished, which unfortunately made this post ridiculously long. I apologize for that. There is no rest for the weary in this house. And with that good night…