Hope for Max

Things are looking up

Well, Max's work of breathing is definitely much better. We have moved the yuckies around so that his lungs are much better on the right side, but not super great on the left. This is to be expected. The pulmonary doctor has also increased his Bi-Pap pressures which seems to be helping considerably. His fever has been down for a full 48 hours, so the plan is to switch him to oral antibiotics (off of IV) and make sure he goes a full 24 hours with no fever. Then we can officially say the scales have been tipped, which means keeping him at the hospital is risking exposing him to more infection, so it may do more harm than good. Since we don't have our inverter in our van yet, Aaron is off to purchase a cargo carrier to attach to the trailer hitch on the back of the van so that we can run the generator in route to power his Bi-Pap. If all goes well we can expect to be sent home Monday. That is good, because while Max is getting stronger and wanting to play and interact more Mommy and Daddy are still going at the same speed and we are pretty exhausted. He is watching his Thomas movies right now and singing along and asking me to dance for him. This is defintely not the same kid from a few days ago.

Here is a picture of Max in his nasal prong mask. He isn't so fond of it, but it's nice to give the skin on his face a break from the face mask. We convinced him to wear it by pointing out how much easier it is to watch tv. It's so good to see that smile! This is daddy after being up all night doing respiratory treatments, a little rough around the edges. He is heading home for some sleep. I have the day shift today.

Sorry for the long post, it's been a work in progress

Friday:

So it is 4:30am and we are doing Max’s second respiratory treatment of the night. I am definitely closing in on a look that could only be described as “hospital exhaustion chic” complete with greasy hair and super awesome sweat suit. I am literally counting down until the cafeteria opens for coffee and possibly a calorie splurge of a donut. ***This just in: Found out that while there are some good things about being in a smaller facility (e.g. x-ray doesn’t come at the ungodly hour of 3am), there is one major flaw, no cafeteria or Starbacks until after 6:30am, ACK! The PICU is locked down from 6:30-8am for shift change report, so I can’t leave or come back between those hours! Help, a hungry pregnant lady is trapped in the PICU (fyi – I added this at 7am). Okay, Aaron did bring me crackers and power bars, but doesn’t coffee and donuts sound SO MUCH BETTER.

Words/phrases we have become very adept at using:

Moving good air (our personal favorite)

Crackles (possible fluid in the lungs)

Infiltration (aspiration of foreign material in the lungs that has decided to set up residence)

Rubbing

Wheezing

Diminished (when the air isn’t moving well in a particular area)

Atelectasis (collapse of an area of lung)

We are currently dealing with infiltration, probably the aspiration, that turned into crackles, that then became rubbing/wheezing, giving us diminished lung sounds and are now trying to prevent atelectasis. The infiltration is in the right upper lobe. How do we get rid of it? Well, we have to stop the bacteria growth with antibiotics and then just think of the Mucinex commercials. We have to get those guys out. Here are the kickers. Max likes to lay on his right side, because it is easier to breathe, go figure, those lungs are open. Also, when you turn him on his left side his oxygen levels decrease because the air isn’t moving as well. They continue to drop during the treatment because we are really aggravating the “yuckies” and moving them around. Now to add to the fun that is all this crazy we switched out his g-tube button a few days ago in hopes that some of the problems might be related to needing a new button (which happens occasionally). Well, when we change the button out we have to be careful for the next few days that what little irritation we caused his g-tube site can heal properly. Unfortunately, his increased treatments aren’t helping that process + the Bi-Pap, which puts some air in his belly = leaking food when he is on his left side. So here we are trying to run that fine balance of nutrition, rest, and treatments and we end up with his food (and don’t forget stomach contents leaking all over the poor kid. Yuck and crap.

Now this evening we finally got to meet Max’s new pulmonary doctor. We REALLY LIKE HER! She has lots of experience with SMA (she came from a much larger facility). I think we may even be able to learn a thing or two. The first thing she is gonna set us up with is antibiotics to have on hand for any time there is a respiratory issue. She feels we could have prevented this had we only had better communication (on the part of those within her office). We talked for quite a while about our protocol, her background, and our thoughts of the respiratory therapists here (while they are super nice, they aren’t very aggressive with treatments, but in their defense maybe they are deferring to us more than they might usually). We did have one slightly disturbing incident today where Aaron asked a therapist to do a deep suction (which is a catheter that actually goes into the lungs) on Max and she seemed uncomfortable and then wanted to do it without a sterile kit (just an open catheter suction). Aaron stopped her because that is clearly unsanitary. We brought this up with the therapist this evening and she was even shocked, so maybe it was a miscommunication. I think we were a little spoiled by our “think outside of the box” group at MUSC. To make a comparison, the skill level we have seen here seems more like what you would see on a regular unit floor RT vs. ICU.

Well, as you all know talking (and blogging) a lot may be a habit of mine, but it is one that I think comes in handy sometimes. I find that if I tell doctors a lot of info generally we hit something of true value that solves a problem. For instance, as Dr. Stewart was leaving tonight I happened to mention Max’s tooth and how one of our concerns on Sunday was that he has actually aspirated on it. We said how relieved we were that the x-rays didn’t show the tooth. She said that a baby tooth may not show well on the x-ray and she really wished she knew this (fyi – I have told every single medical professional I have spoken with about this). If Max doesn’t show much improvement tomorrow she is ordering a CT of the chest. Just when we thought we had passed the major hurdles, something else to worry about. I don’t know who I will be more mad at if this tooth is the problem, myself or the ER staff for assuring us that it would have showed. As a side note, I have to give Aaron props, in addition to his usual awesomeness (they guy did bring me Chick-fil-a for breakfast) he has never been convinced that the tooth wasn’t the issue. He looked up a lot of x-rays of swallowed teeth and they weren’t as evident as we were told they were. Now he and I are both hoping that this is not the case, because then they would have to go into his lungs to retrieve it.  

Saturday:

During the night we rolled with treatments every 3 hours.  At 3am we noticed blood on the bed. Max’s IV was messed up and we had to pull it. I asked about waiting until daylight to replace it, since he is only getting the antibiotics through it twice a day. Well, his next dose was due at 5am, so we had to go ahead and get a new line. That is all fine and good, except he is a really hard stick and she wasn’t having much luck in the way of locating a good vein. She was able to get one and a half hour later we were getting back to sleep. Well, when I went to get him ready for his next treatment I turned him only to find his fluffy friend “Jack the Chameleon” was soaking wet. Apparently his IV meds leaked all over instead of going into Max’s line, so they ended up pulling that IV out and are now going to have to try and find another one. The poor kid is exhausted with the increased treatments and now we have to wait again after treatment for a new IV. This is why at 3 am I was like, can’t we just wait until the morning for this. I’m not really fond of a middle of the night IVs that aren’t emergent. It took two additional nurses before we finally got a working IV this afternoon. We have definitely seen some improvement today. We have been able to decrease his oxygen to 1 liter vs. 5 from Thursday. He still freaks out if you try to take his air (aka Bi-Pap) off of him. I think the increased treatments and deep suctioning are paying off. Poor kid is now on three different nebulizers, one of which will have to last for 28 days (it’s an inhaled antibiotic). Dr. Stewart seemed pleased with his progress today, but I don’t think we are going anywhere until Monday at the earliest. On top of everything else I feel a cold coming on, so Aaron went home for a couple of hours this evening and I will go home to sleep for the night.  I hope they have a much less eventful night than we had last night.

A few thank yous: Of course we appreciate all the prayers.  In addition Max’s nurse Robin stayed with us for the ambulance ride and until we got settled in the PICU on Thursday, which is a really long day. She returned on Friday loaded down with fruit, cookies, protein bars and drinks for us. My cousin Lisa brought us dinner on Thursday night and my brother Travis brought us some dinner tonight. I will say it is nice that this PICU allows food in the rooms.

A new PICU, a new crew

I am not going to get into all the particulars (because I could rant and rave for a while), but Max has not been improving at home. His fever continues and does not let up even with medication. We finally convinced the pulmonary that he needed an antibiotic, but it was this morning and it was too little too late. With a fever that wouldn't seem to quit and worsening lung sounds we knew we were at decision time. His breathing respirations were consistently in the 50s vs. his typical 20s and he was just having to work so darn hard. Why are respirations important, well, given his short shallow fast breaths there was concern for gas exchange, we didn't want him exhaling off too much CO2, there was also the fear that he would simply wear out and not be able to breathe even with the Bi-Paps assistance. The LAST thing we want is an emergent intubation. We were so concerned that we actually had him transported via ambulance this afternoon. For those keeping track this is our 3rd ambulance ride in less than a year...not a trend I want to continue.I was a little alarmed when the paramedic with Max told the driver to roll "10-50"...for those in the know that means full lights and sirens, so sad Max couldn't appreciate this. I gotta say, it is a lot more unerving rolling through an intersection when that light is red and you are praying the other drivers are paying attention and did I mention rain and tornado warnings, sometimes I do feel like our lives are an episode of Grey's Anatomy.

Well, after spending all afternoon in the ER we were finally admitted to the PICU...they were seriously busy today. Max's chest x-ray does show "infiltration," but pneumonia results take at least 24 hours. They are treating him like he has...wait for it....wait for it...aspiration pneumonia! Hmmmm, sounds so familiar, oh I know, it's what I've been trying to explain to all of his docs for the last four days. Wow, it's almost like I've seen this before or heaven forbid can use my amazing mommy powers of deduction or that Aaron and I may not know crap about all of medicine, but we know EVERYTHING about Max. I just want to point out that I don't think we have avoided the hospital for 2 years on luck. I also think that the staff finds me, Aaron and Max overwhelming...how many type As can you put in one family. Just so you know Max also still has his wits about him, he is introducing himself as "DJ Max E Max" and then proceeds to do a little "beat box" for them. The staff has even commented on how polite he is, he even thanks Aaron after each cough treatment. There is nothing sweeter and more heartbreaking then hearing Max say, "Thank you Daddy" after Aaron does a cough machine cycle on him. I have to say Max has been much more in tune to the benefits of the cough machine this time, even asking to be coughed and directing Aaron to turn up the pressure settings, wise beyond his years. These are good signs. He is verbal and he is digesting food, we would be much more worried if these two things weren't happening.

So that is where we are at: Max's CO2 levels are normal and we are on some broad spectrum antibiotics. Our hope would be that we would see a turn around in the next 24 hours. A turn around would be lower temps and less work of breathing, also, getting off the supplemental oxygen (right now he is on 4 liters). I would love to make a prediction for this, but for my faithful readers you know as well as I do that Max drives this profile. Thanks for all the prayers.  We will update again soon.

I was really hoping for a kinder, gentler 2012...

Well, we officially have a big boy in our house, but not without the typical drama associated with all of Max’s milestones. Max lost his first tooth. It was slightly overshadowed by the fact that he also swallowed his first tooth. I get a call from the nurse when I was on my way home from the gym and I can tell she is on edge. She tells me that Max’s tooth has come out and she can’t find it. Apparently, after the tooth came out he clamped his mouth shut. Thankfully, I was almost home. We looked all in his mouth, really wishing the whole time that he could open his mouth a bit wider. Our worst fear was that he could have possibly inhaled it, but he wasn’t having any breathing issues and he said that nothing hurt in his throat. Once we quit messing with him he calmed down quite a bit. I have to say it was a bit frustrating. Now, to be honest, I have never looked forward to this phase. I hated pulling my teeth when I was a kid. It totally freaks me out and that is without all the obvious problems that could arise in our particular situation. Teeth have really been nothing but a problem since they came in. Teething was a nightmare for Max and with all that drooling we were always concerned about aspiration and pneumonia. It was such a relief when that was over and now we have a whole new set of worries.  Well, the remainder of the week passed without any tooth sightings, if you catch my drift and frankly I do have a line and searching through poo is definitely it. Sorry, if that makes me a bad mommy.

Okay, so you can't see the missing tooth in this one, but he is so darn cute.

So here we are one week later and we have a very sick big boy on our hands. On Saturday, he began running a fever. By Sunday, he was having problems breathing with oxygen saturation in the low 90s, still fever, and complaining of chest pain. Aaron and I decided to take Max into the ER for a chest x-ray, as Aaron has still not been able to locate a home x-ray machine. Our biggest concern was that instead of swallowing the tooth, he has inhaled it and it was causing problems in his lungs. Well, we braved the chaos of a Sunday afternoon at the pediatric ER and his lungs were clear (yea!) and all the viral tests (RSV, flu) were normal, so we headed home. He really doesn’t seem to be getting much better yet. He is requiring his Bi-Pap for breath support and some oxygen to give him a break. Of course, my biggest complaint is that his pulmonary doctor has relocated and we were completely unaware until I tried to page him this weekend, so now we have a new pulmonary with no idea what our protocol is. Even better, is that we couldn’t get in for a follow-up until May…are you freaking kidding me? Anyone looking to go into the medical field, we are in DESPERATE need of pediatric pulmonary physicians. It’s not glamorous, and sure there aren’t many cures out there for kids with pulmonary issues (e.g, Cystic Fibrosis, neuromuscular diseases with respiratory complications, asthma), but I haven’t heard of a hospital that wasn’t a 6 month wait for a pulmonary appointment. Now the good news is that they are supplementing with physician assistants and nurse practitioners, who we have always had good luck with, so after much prodding and basically telling the nurse how angry I was (in not the nicest words) that we weren’t aware there was a change in doctors we have an appointment on Monday with the NP.  It is times like this that I miss our Charleston team so much. As always I have already learned some valuable lessons from this experience. I will NEVER let a doctor convince me that we should only be in touch when Max is sick. If I had only kept our standing six month appointment, then we wouldn’t be in this position right now. The doctor’s reasoning made sense at the time. He didn’t want to expose Max unnecessarily to sick kiddos, but now that he is sick we are in a bad position. Of course I should also thank Tricare for cutting nursing hours. Guess what two parents were up all night with Max because we don’t have enough hours…yep, us. Since Max isn’t in school this week I don’t have enough hours to cover daytime help like I use to either.  Don’t get me wrong, I get it. Money is an issue and cutbacks have to be made somewhere (and we are far more fortunate than many families who lost care completely), and typically nursing coverage isn’t a problem for us, but when he is sick we definitely feel the strain.   I think if we could just get Max comfortable enough to sleep we would all feel better. We are walking that fine balance of rest, food, and treatments. Thankfully, we have only heard a few crackles (suggests the presence of fluid, not mucus) in his lungs and we are running treatments every four hours to clear them out. I do think today is our best day as far as fevers go, meds have barely touched them in the past few days, but today seems much better and controlled with the meds.

Here’s hoping to some sleep tonight for all of us (well, except the night nurse she better stay awake).  Poor Max whimpered all night and wanted to be turned every 5 minutes…I really wish I was exaggerating. While I did get a lot of cleaning done throughout the night…I’m now only one week behind in the DVR and Aaron was able to work on our taxes, I much prefer sweet dreams for all of us.

I think that is enough ramblings from the sleep deprived, nauseated, oh and did I mention pregnant (so I’m not quite as quick on my feet as I use to be) mom for right now. I guess I should have labeled this post with an appropriate warning.

What more is there to say?

Mary said, "Behold, I am the handmaid of the Lord.
May it be done to me according to your word."
Then the angel departed from her.

These were the last words from the gospel reading on December 20, 2011. This was also the day we had the CVS test performed. I took great comfort in those words, especially on that day. I was really nervous about the test (not really one for pain) and was also nervous about the risks involved and then the results themselves, well that goes without saying.  After reading those words, I was very much at peace. Not only the obvious, the words themselves, but I have always used that particular scripture as my own “pray without ceasing” prayer.

Well, almost three weeks later and here we are. Aaron and I received the call from the genetics counselor. Our little Alexander Dominic is SMA positive. As I am writing this the shock is still there. I guess shock isn’t the best word, as we knew the risks involved. We took those “risks” welcoming whatever child came our way, SMA or SMA free.  It still doesn’t make the news any easier.

Once again, it is a time for Aaron and I to let go. We must let go of expectations, plans for the future, and really any control we mistakenly thought we had over our own lives. We prayed for “normal.” We prayed for just a small slice of what other parents get every day. Aaron keeps reminding me that normal is relative and if I’m being totally honest if normal is what society tells us that it is, well, it’s almost downright disturbing.

We understand that you have no words of comfort and those that think they do…well, to be frank, they’re probably not very helpful. We don’t believe God only gives you what you can handle or that God wouldn’t do this to us if we weren’t strong enough to handle it. I don’t think and truly anyone with a stellar grasp of theology would agree that God doesn’t specifically punish people with some calamity to prove a point. Please save the clichés for someone else.

Here is what we know. God only creates things that are True, Good, and Beautiful. Whether or not that falls into what the world considers such is really not our problem.  We have no idea what the future holds for us. We can generally assume that Alex will present with the same type that Max is, but there are really no guarantees and to try and make plans seems like an effort in futility. We only know that it is a blip on the radar compared to eternity. We only hope that we can provide for our children and give them as many opportunities as possible, really all any parent can hope for. Please don’t assume this doesn’t make our current pain any less real. I sometimes think I know exactly how Mary felt when Simeon said to her, “-and you yourself a sword will pierce-“ (Luke 2:35). We experience that pain over and over anytime we see Max stifled by his physical limitations. I’m sure it will be no different for us with Alex. Thankfully, we will be better prepared to provide what Alex needs because we have walked this path before. I guess if the truth be told, we know this path better than raising a mobile child. In some ways having found out that Alex was SMA free would have provided its own set of challenges. How would we explain to Max the lottery that is genetics? We knew it would be painful to have one child “running free” while the other could only watch. Instead, perhaps we will have two beautiful boys who will completely understand each other.  

So what is helpful? Just treat us normally. Our lives have not changed, yet. We are still struggling with disappointment and I would be lying if I said we weren’t angry. Give us some space. Being around parents with small children is difficult for us. It is a painful reminder of our own family’s limitations. Continue to pray. Max has been such an incredible blessing and little Alex will be a powerhouse in his own right to be sure.

Peace.

Our Disney Adventure...

So I know you are all anxiously awaiting the details of our Disney experience and to say I have a lot to blog about would be a vast understatement. Most of the pictures are going to be in an album on the side of the webpage (which is gonna take a few more days) - there are just too many to put in the blog itself.

I should start off by reminding everyone that this was our first "real" vacation as a family. Yes, we’ve been to SMA conferences, visited family, and even tried a couple of days in the mountains one fall, but as for a strictly family vacation…this was a first. There is a lot of planning that goes into taking a vacation at the High house. Just arranging all of Max’s supply shipments around our dates was quite a chore (to make sure nothing came while we were gone, and Max didn’t run out of any supplies). Add in the fun of not getting the van until the week before we left and making the maiden voyage a 7-and-a-half hour drive loaded down with all our stuff (suddenly that huge van became very small…really wish I had taken a picture). Needless to say the prep work the week before was long and arduous. Thankfully, with the discovery of Ears of Experience (a Disney vacation company), the one thing I didn’t have to worry about were the details of the trip. They really took care of everything. I have to admit handing over control was a bit daunting for me initially, but I am so glad I did, because it took such a huge weight off of us.

We headed out last Sunday and met up with my parents and brother on I-10. A special thanks goes out  to my brother, who covered the cost for our hotel rooms Sunday night en route. On Monday our hopes for Sea World were almost dashed due to weather, but the rains lifted after 10am and it couldn’t have worked out any better. I think most people had canceled their Sea World plans for the day, so the park was not busy at all. We were there for about four hours before the rain moved back in, but it was definitely worth it. We got to see the whale show and even got a good look at a couple of walruses close up (which I have to say may have been the high point for all of us, seriously have you ever seen one close up, it’s crazy). Then we took a walk through the underwater shark tank tunnel. FYI – we actually enjoyed Sea World more than the Georgia Aquarium and one day passes are currently free for military and immediate family.

Now prior to leaving on Sunday, Aaron and I had a long discussion about schedules. Some people, basically anyone who has ever spent more than a couple of hours with me knows that I am a stickler for a schedule. This mostly works to our advantage, as Max needs to get his food boluses every 45 minutes, he can only be in his chair for certain lengths of time, and treatments have to occur regularly. Now I will be the first to admit that sometimes I am ruled by my schedule…my friend Kristen makes fun of me for scheduling time to relax (e.g. I may have told her last time she visited that we could lay out on the beach for exactly 45 minutes). This is how I keep my sanity or rather not let my insanity show. Now why is this pertinent to our trip…Aaron wanted to make sure we were on the same page regarding schedules, not to have one. He didn’t want the stress of having to feel like he was working against the clock the whole vacation. We agreed that the only time we would absolutely keep was the brunch with the characters and the dinner luau. Okay, I’m finally getting to the point…Monday morning my watch stopped working. I can’t even remember a time I haven’t worn a watch, seriously. Your thoughts? Did Aaron do it? Was it Divine Intervention telling me to relax? Who knows? Needless to say the watch went in our luggage and we still managed to feed Max and make all our engagements, who da thunk it?

Okay, back to the trip.

We arrived at the Polynesian Resort Monday afternoon. We LOVED it! I will never stay off the monorail again. It was so easy in terms of accessibility. Max totally got into the Hawaiian theme, saying Aloha to everyone he passed. Even better we could watch the fireworks from the beach at the resort. The service was awesome, typical of Disney, and the rooms were very conducive to our needs in terms of space. All the lush greenery gave the place a very relaxing feel and let’s face it, it’s the closest Max and I are getting to Hawaii. We watched the fireworks that night and turned in early to hit the ground running for the Magic Kingdom on Tuesday.

The Magic Kingdom was as magical as always. Having been to Disney World many times growing up there is something so special about getting to share the experience with Max. I think initially Max was very over stimulated, there was so much to see and so many people. Our first stop was for a guest assistance pass for our group. This is a red card that acts as a fast pass on to rides for those with disabilities. Incidentally, Max was in a chair, so the need for the pass was pretty evident, but if your special need is not necessarily as evident (e.g. autism) they recommend a letter from the person’s physician. Now the point of the guest assistance card isn’t to necessarily get you on rides any faster, but the mobility access points are typically via the fast pass line (basically the normal lines don’t meet accessibility guidelines). Depending on how many people are waiting with chairs it could actually take longer to get on an attraction as they only allow so many “handicap” people on a ride for emergency evacuation purposes. Thankfully, each park has a mobility guide for all the attractions, so we knew what rides we had to get Max out of his chair for, what he could stay in his chair for and what wasn’t even really possible. It also gave details for how to access all the rides. Combine that information with the itinerary from Ears of Experience and our day was way less stressful than we anticipated. Now this was the funny part, every ride we would suggest Max would tell us no. We made him ride Dumbo, which of course he loved, but then I had to make him ride Winnie the Pooh too…which they actually let him ride twice in a row. We absolutely could not convince him to ride the tea-cups, which is my all time favorite. He said it was for girls. By the time we made it to Tomorrowland Max had caught on. He realized that all the people waiting in lines meant there was something cool going on. Then he started stopping at every ride. Needless to say we ended up spending the majority of our time in Tomorrowland. We still have one day left on our passes, so we have promised to take Max back to the Magic Kingdom one day and see the night time parade, which was the only thing we missed on the trip.

The next day was the Animal Kingdom. We didn’t do to much there as it was definitely the busiest and least conducive for Max’s chair (lots of winding walk ways and bumpy surfaces). Max, Aaron, and my dad were able to do the Kilimigaro Safari, which they actually got stuck on due to a giraffe choosing to hang out on the path of the ride. Max really enjoyed it. It was super bumpy, so Aaron had to hold Max’s head, but worth every minute. We went through a little of Dinoland and even got a very personal stop from Pluto who was en route to another location. Pluto’s attendant kept having to tell people to keep moving that he was only stopping for Max. I felt a little bad about that, but he was so sweet. Max also got to meet his #1 favorite character, Goofy. Aaron and Max love to say, “garsh” to each other. A little Disney trivia for you…What is Goofy’s son’s name? Well, what else…Max.

That night we headed to what I would say was one of the highest points of our trip. The luau at the Polynesian Resort. Gosh, it has been over twenty years since Travis and I went with our parents to the luau (unfortunately, Travis had to head to a work conference, so he missed this and the rest of the trip). Max was really excited about the luau. It was actually what he talked the most about before we left. Well, we had great seats and Max could really see the stage well. The only thing we didn’t account for is that at the beginning of the show they called all the kids up on stage to hula. Well, there was no way to navigate his chair through the crowd and even if we could we didn’t see a ramp to the stage (which Max insisted was on the right side of the stage). Max was really upset, which was kind of surprising, because typically he doesn’t like to do that kind of stuff. I promised him that if there was a ramp I would make sure that we got him on that stage before we went back to the room. Sure enough a few minutes later I looked around a pole that was blocking my way and there was a ramp on the right side of the stage. A little while later Aaron spoke with the manager and explained that Max really wanted to go onstage and could we do that after the show was over and maybe see if one of the cast members would come take a picture with him. The manager told us to hang out after the show and he would see what he could do. Well, after the show the manager led us around to the side of the stage and out comes the majority of the cast to see Max and take pictures with him. They led him up on stage and proceeded to chat him up and take more pictures. A few of them actually brought out their own camera phones we took pictures of them with Max. He felt like such a star. I can safely say that me, Aaron and my parents were blown away. Aaron is supposed to send the manager one of the pictures for them to put up. Then the manager told us that the majority of the cast members are actually the children of some of the original cast members, so when we were here years ago we probably were watching their parents, crazy.

Our last day was spent in Hollywood Studios. It was another great day.  Actually, every day we would ask Max what his favorite part was and he would say, “I love it all.” We started the day with breakfast with the Disney Junior characters. Max told Jake from “Jake and the Neverland Pirates” that he wanted to run over Capt. Hook’s feet. That made Jake laugh. We also saw June from the “Little Einsteins,” Special Agent Oso, and Handy Manny. My dad got tons of great pictures. I have to say Max made some pretty good decisions during our trip. Before we went to see Disney Junior Live on Stage Max wanted to go through an animation studio (where they show you how to draw cartoons). Well, what a good choice, who did we see inside…no other than Winnie the Pooh and THE MICKEY MOUSE. We went to go get in line for Mickey (clearly the longest line) when one of the character attendants motioned for us to come over to the side. They let us cut the whole line to go ahead and see Mickey. Max was totally chatting Mickey up. Aaron kept telling him that we needed to let Mickey see the other people waiting, but Mickey motioned for Max to keep talking. I will say this is where Disney and the workers really seem to “get it.” They know that kids with complex special needs already experience a much shorter day in the park due to fatigue and have to be transferred more often. Every bathroom stop for us took at least 15 minutes. I know some people joke about going to a park with someone handicap to skip the lines, but most people don’t fully understand the complex nature of a person who is in a chair and just how much work goes into caring for that person, not to mention kids without the “obvious” disabilities such as Autism who cannot tolerate large crowds, noise, and commotion. We just want our kids to experience as much of the park as possible too. We were very grateful for this favor. The characters were always so sweet to Max and would shake mine and Aaron’s hands.

Well, by dinner time that night the thing we feared most began to become a reality. Max started to need suctioning frequently. We didn’t have the heart to tell him that we couldn’t go to the Magic Kingdom parade due to his not feeling well. We feel like he already misses so much due to his immune system. Instead, we told him the parade was canceled. That is when we promised to bring him back for another day in the Magic Kingdom. He kept saying that he wanted to live here and not go home.

We headed back to Pensacola the next day, with Max needing frequent suctioning. Now we are in the full throws of strep throat. Max fell first, then Aaron and now me. Needless to say that is what has taken so long to get the blog post up. Can you imagine how long this post would have been if I was feeling better? Count your blessings!

Aside from the rest of the pictures from Disney this will probably be my last post until after Christmas, possibly the New Year. Thanks for keeping up with the High family in 2011. We are hoping for a much less eventful year in 2012.

From our family to yours have a Blessed Christmas and a wonderful New Year!

Peace!

So much to be thankful for...

So as Thanksgiving weekend draws to a close and the holiday season is kicking off, we are not nearly prepared. Our original plan for Thanksgiving was to head to Panama City and stay with my parents. Unfortunately, due to the typical "High family shenanigans" that was completely rearranged at the last minute we had to ditch "Plan A", in favor of "Plan B." Aaron hasn’t been feeling fantastic, the new van STILL ISN’T DONE (seriously, don’t want to even write about it), I haven’t been feeling great and the final nail in the coffin was on Tuesday when Max’s nose started running (which ended up being short-lived). Needless to say, my parents ended up bringing all the Thanksgiving dinner fixings (including my brother driving over Granny) to P'cola. It was a much smaller and lower key holiday, but wonderful just the same.

In the past two weeks our world has been completely turned upside down.  As of today I am 9 weeks pregnant.  We wanted to wait until after the first ultrasound before we announced this new addition. This is the “farthest” I have made it all year and my numbers are much better than they were after the accident, so we are hopeful for an uneventful pregnancy. As some of you may know SMA is an autosomal recessive genetic disorder. Without getting into the details, it basically means that every child Aaron and I have together has a 25% chance of also having SMA. Aaron and I have taken this into careful consideration over the last four years. I have also been reading (quite a lot thanks to a lovely group of ladies at our parish) about Mother Teresa’s thoughts and words about the dignity of all people. Regardless of abilities or disabilities we know that all people are made in the image and likeness of God. We refuse to live in fear of a disease. With that being said we will be having CVS testing performed on Dec. 20^th to find out if the baby is positive for SMA. We would like to be prepared as best we can for whatever this little bundle has in for us. I would like to ask for prayers for a healthy child and pregnancy. I am specifically asking for the intercession of Mother Teresa (thanks to Max’s godmother, Kristen, for pointing out the obvious) and the Blessed Mother. On a side note, my updates may not be quite so colorful, as I am dealing with LOTS of nausea. Maybe a prayer or two for an easing of my nausea would be appreciated, as we are heading to Disney soon and I would really like to be able to enjoy Max’s first Disney experience. I'm also praying that I still fit into my pants for the Disney trip. I am gobbling up all the food at our house to keep the nausea at bay. Lucky for me I have the best husband in the world, who has promised me every color in the rainbow of Wal-mart sweatsuits - and yes, they will include matching tops AND bottoms! What more could a girl ask for?

Now for the other shoe to drop…like I said typical High family shenanigans. Aaron received word last Monday that he will be deploying for a year, with TDY training beginning this spring and mid-summer boots on the ground for the year to begin. Now for those of you counting on your fingers, you’re right the timing actually stinks. It’s not even so much about the birth (which is important and would be nice for him to be present for), it’s really about the logistics of picking up and moving Max with a full pregnant belly. Aaron is requesting to have the deployment delayed for six months. We feel fortunate that we are close to my family and have an excellent school set up and support system for Max. Family and friends, go ahead and prepare yourself for "Operation Family Rotation" at the High house…you have been warned. For as overwhelming as all of this is for me, I know we will be okay and that God’s timing is perfect. Please pray for Aaron. His job has taken him from us numerous times for short stints, but this will definitely be the longest and I know he will miss us all terribly.  Now for my own sanity, in the words of Scarlett O'Hara, "I'll think about that tomorrow."

Like I said, last week seemed to be one for the record books in terms of crappy news. Nothing earth shattering, just blah. Every October our nursing hours are reconfigured with some crazy formula and they change. We received word last week that our hours have been cut by 21 hours a week. That’s about 2 and a half shifts. When Max is well and in school we shouldn’t really notice much of a difference, but on weeks that he is home sick and/or summer we will have a little less coverage.  As I progress we may have to shift schedules from night to day. Right now it is tough for me to get up with Max in the middle of the night, because I end up getting sick, so night time coverage is necessary. As I get less sick and bigger, I will need nurses with me while Aaron is at work to transfer Max.

So this is where we sit, I’m pregnant and sick, the van still isn’t done, Aaron is deploying in the not so distant future, and our nursing hours have been cut. Pick your prayer intention, we could use a lot of them.

Now don’t think it is all doom and gloom at our house. We have more to be thankful for than we could even begin to count. Max is thriving, Aaron has a job, we have a safe place to live and food on the table. We want for nothing of importance. Below is a wreath of thankfulness that Max helped me make for Thanksgiving (he’s just not into the whole feasting thing :-)). I would like to point out that Max added all the typical things to be thankful for and some that many take for granted. Take glue for instance. I thought he was just picking things in his line of vision and he was very clear that we need glue to stick things to each other and that is a good thing.

 

Well, I think that is about enough to lay on you all today.

Peace!

Happy 5th Birthday Maximilian Patrick!

Wow, five years old. We can hardly believe it! If anyone had told us four years ago that we would have seen this day come it would have been hard to imagine, given the information we had available.

In the past five years Max has taught us innumerable lessons. We have learned doctors don't have all the answers. We have learned what true hope is. We have learned what faith in action looks like. We have learned to live in the present, because tomorrow holds no guarantees. It seems that everyday holds a lesson, if you just take the time to listen. A few months ago a lesson was learned during a typical Occupational Therapy session. Max's arms were getting stretched and he really doesn't like that. We could tell that Max was whispering to himself. I bent down to hear what he was saying and this is what I heard, "try to be brave, try to be brave." Since that day whenever it has been a little tougher around the High house than usual I remember to "try to be brave," after all if my 5 year old can do it...so can I.

He has also taught us that joy is in the simple things, or not so simple when planning a child's brithday party. I will be the first to admit that kid's birthday parties are not my strong suit, especially since most of them are surrounded around themes that include physical activity. I can't count the number of parties we go to where Max gets to watch the kids play the whole time. So when it came time for figuring out what to do for Max's party I was kind of at a loss. That is until I discovered the reptile guy (not so much discovered as heard about him from another spouse in the squadron). Max was so excited about his party yesterday. He woke up wanting to go right then. I had to tell him it was still 7 hours away and he informed me that an hour was a really long time. Luckily, Nana and Papa were here to play and we got to Skype with Grandma and Grandpa High, so he could open his presents from them. The rest of the time before the party was filled with garbage...literally. Grandma and Grandpa got him a huge garbage truck and some books about garbage trucks and movies about garbage trucks. Let's just say we learned quite a lot about garbage yesterday.

Max had a blast at his party and I think the reptiles were a hit with kids and adults alike. In addition Nurse Nancy was on hand to give all the kiddos balloon mermaids and monkeys. Below are some, okay, a lot of party pictures...

This is Max walking with his buddy, Hunter. He wanted them to hold hands, collective ahhhhhh.

Max with a hissing cockroach, yuck!

Leopard Gecko

Okay, this was funny. Tim (the reptile guy) just let the tarantula roam around his body while he pulled out more animals. The kids were going crazy.

Feeding a tortoise...

You'll notice you don't see Aaron or me near Max at all...this is why.

Fun with an iguana...

Ummm, yeah, so this is the other reason Aaron and I are no where to be found. This was one of his "snakes in training," even Max was a little hesitant.

Something else you would never find me doing, but my Busia had no problem, can anyone say Christmas card picture...

The kids really enjoyed petting the alligator.

Now this is a group picture!

Even my Uncle Tim and Cousin Briana couldn't resist.

Cupcake Extravaganza, unfortunately it was to windy to light the candles.

Thanks so much to all of those who came out to celebrate Max's birthday. Especially to our family who continues to support us by driving two and a half hours to attend a child's birthday party (anyone recall a massive trek to Charleston 2 years ago :).

Hope you have enjoyed this taste of reptile mania!

Peace!

Happy Halloween!

Well, it's that time of year again. Time for Aaron to pull out all the stops and create Max's choice of halloween costume. This year was no different...okay it was a little different, because technically none of us dressed up, as opposed to last year when all three of us were a little trio known as the Wonder Pets. Now you're probably thinking, hmmm, how creative can it be if none of you dressed up. Well, if you ask Max "chair" dressed up for Halloween, Max is merely doing the driving. So drumroll please....

This is Aaron's interpretation of an airport fire truck! Max has been discussing this costume for over 2 months. Aaron really puts all his love and creativity into Max's costume. Once again he managed a success story. Some of the lights look like they are not working, that is because they are flashing and there was no way to catch them all at the same time. Aaron made countless trips to Lowes and Walmart and perused many a lighting site online to make this dream a reality. Needless to say it has been a hit wherever we went.

I do think we managed to peg the Halloween fun meter. We participated in two trunk-or-treats, so we are definitely getting some milage out of chair's halloween costume. Tonight the plan is to hang out in the driveway and pass out candy(sure do miss our Charleston neighborhood this time of year). On Saturday, Max, Ms. Robin and I headed to the West Wales RV Park (random, I know) for a Halloween train ride. We rode the train, went through a haunted maze (Max was such a big boy, not even scared), and picked out pumpkins to decorate. It is such a treat for us, as this whole experience is COMPLETELY ACCESSIBLE, plus they let Ms. Robin in for free since she is his caregiver! What a great experience. Max is already excited about their Artic Express for Christmas.

Here we are just before heading into the haunted maze. Max promised not to cry or be scared. We had a quick peek to make sure it wasn't to much for him. He seemed to like it, but was pretty adamant about not going back through on the way out.

Now the countdown is on...two weeks until Max turns the BIG FIVE! Next post will probably be lots of birthday pictures!

Peace and Treats!

Infusion Day

Today is infusion day, one week late, so I thought it would be a good opportunity to provide a High family update.

Infusion (which Max gets every three months for bone density) was supposed to be last week. I decided it was time to be honest with Max and instead of springing the infusion on him when he woke up that day I decided to tell him the evening before, in the hopes that it would prevent an early morning meltdown. It’s already tough because the hospital is an hour from our house and we have to get him up extra early to get there on time, all and all not a great combination for Max’s mood. Only a few tears were shed, but the next morning after an uneventful night of sleep Max woke up with a tummy ache and high heart rate. I had to wonder if this was from anxiety, but we canceled the appointment and it was a good thing, because when he finally woke up on his own, 3 hours later, sleeping in to almost 10am, it was clear he had a cold. Thankfully, it was a minor cold and after 2 full days of rest and aggressive respiratory treatments he was all better. Although the middle of the night treatments were a little taxing for mommy, especially since it was a new level of training. It was this particular night nurses first go at middle of the night treatments, a testament to how well he has been recently.

So here we are one week later and once again I warned Max the night before. I think it helped tremendously. Typically he cries all morning on an infusion day, but today only a few tears were shed. We have talked at length of the benefits of this treatment with him. Our “one and done” nurse was able to come through and Max got to tell her about his Halloween costume. He has been a perfect gentleman all day. At one point I thought maybe it was something in the infusion and then I looked around and realized all the nurses were young and cute…enough said. All total he was such a trooper even though he got his flu shot too. 

Our last few weeks have been pretty low-key for the most part. Max is continuing to enjoy school and I swear Ms. Robin e-mails me about 10 pictures from every day at school. Max is making friends. In fact, one little boy told his mom that Max was his best friend. That made my heart so happy. I would post more pictures, but since there are other kids in the pictures I don’t want to overstep any boundaries.

On October 2^nd we celebrated my mom’s birthday. Max literally saved the day by saving the cake he and I baked together. It was a chocolate cake from scratch and I had forgotten to add the oil. Just before I was going to put the batter in the pans Max asked when I planned on putting the oil in. Boy would that cake have tasted awful and all our hard work would have gone to waste. Here is a picture of us with the cake. Nurse Nancy provided mom’s balloon crown.

In big news…our lift for the new van is FINALLY IN! Our van will go into the mobility shop next Monday and it will take 3-4 days but we will finally have Max’s “elevator” in for him to use. Watch out P’cola! I’m still working on my driving skills. We are so grateful to have been able to borrow my grandmother’s van and it is a testament to my grandfather’s planning to make sure my grandmother would always have transportation despite any future physical limitations. Who knew that we would see the immediate benefit of such a decision, guess Dzia-Dzia is still taking care of all of us. Thank you so much to Busia and my aunts and uncles for being so generous. It has made the last 4 and half months bearable. Had we had to rent a van it would have run us $150 a day or Max would not have been able to leave the house in his power chair. We feel so blessed to have been able to take Max to school and therapies and basically live life as normally as possible.

Now for a prayer request: Aaron’s brother, Andrew, had shoulder surgery recently and is experiencing complications in the form of blood clots. This is a serious issue and he has had to go down to the University of Minnesota for surgery to take a vein from his leg and put it in his shoulder. The surgery is Thursday (tomorrow) morning. Please keep, Andrew, his wife, Jodee and their kids, Sam and Kaydee in your prayers.

Peace