Tuesday, August 26, 2014


I’ve decided I really need an “Off-Switch”.  Sometimes I just can’t stop my mind from going over and over things.

I’m still re-living the broken arm, it just doesn’t make sense how it happened and when it happened. I’m really beginning to wonder if maybe I missed something in the Go-cart crash that happened just a little over two-weeks before the arm did break.

I know Austin has a very high tolerance of pain which is very frustrating for me.

He had a lot of discomfort, pain and swelling with the groin injury and I wonder could it have masked something else that was wrong?  Could he have had a fracture, hairline or not, that was already there? I’m thinking that might have been possible, we were all so focused on the injury to the family jewels area that maybe I missed the other injury.

I’ve got to let it go but I’m wondering if I need to be a little more diligent when it comes to injuries but how do I do this without becoming an extreme helicopter mom, without driving him nuts (well maybe I should drive him a little nuts as payback for how he’s impacted my sanity J). The other question might be how do I do this with medical staff so they don’t question my sanity?

Not sure if there is a fix. Nobody said motherhood would be easy, there was an expiry date or I would be perfect but damn I wish sometimes that there was a better owner’s manual for Austin. 

Monday, August 25, 2014

Shit Happens

This could not be a more appropriate title for a blog, especially a blog of our adventures.

Just Saturday I was celebrating because Austin had a bowel movement (BM), just a sign we were getting back to normal. In our last surgery for his spleen removal his bowel went to sleep which created a minor problem so I had been anxiously awaiting the first BM.

Well I’m more than over it today, Monday, when I got up this morning and found two brown lumps and dirty pajama shorts on his rug in his room.  They weren’t there at 2 am, so it happened sometime between 2 and 7 am. I do have something to celebrate though, it was pretty much contained to one area.  Years past when we would have the occasional visits from the crap fairy my biggest problem is that he would try to hide it, he’d try to tuck it away in his closet which was even more of a disaster. Keep in mind there is no anger when stuff like this happens, only time there is a little frustration is when he does try to hide it, so today he was actually told “good job” because it happened and was contained on the rug. 

Now that doesn’t mean I take my cleaning and disinfecting lightly, everything, including Austin, was thoroughly cleaned this morning.  Wasn’t on my to-do list but that’s life for us, mom’s to-do list is often modified by others.

I always say if you start your day with crap it can only get better, and today it actually did J.

We got to the hospital for our blood draw a little later than expected but that actually worked out well, we had very little wait time. Austin goes out wearing an old bowling shirt that was Dad’s for a work bowling function, they had mock names sewn on and Austin goes by “Krusty”, as in “Krusty the Clown” from the Simpsons. So Krusty and I navigated through our journey out pretty well with no problems. This was his first trip out since coming home from the hospital, not a very fun journey, and he didn’t have much of a choice when it came to what arm they could use for the blood draw.

I was home only for a short time and I hadn’t even thought of checking the online chart results when I had a call from his hematologist.  That, of course, was a time when my heart dropped just a little – when do you get calls when it’s good news?  Turns out it was good news, hemoglobin went from 11.8 to 13.1 (just shy of the low-end of normal, 13.5), white blood count dropped back to normal range (it was actually quite high after the Go-cart crash) and platelets are running a little on the high side, outside of the normal range. Platelets haven’t been above 630 since February.

Later Austin smiled from ear-to-ear when Mr. Don, an aide in his classroom, stopped by to see him. Gotta love it when school staff make it a priority to take time out of their day, when they are not working, to make Austin feel special!

All this excitement has worn him out a little but he’s still doing better than the day before – who could ask for anything more, I'm pleased.

So for all of you, when “shit happens” just think of me and know you’re not alone.  And remember, just because it happens doesn’t mean it has to ruin your day,that is something you do have control over. So I'll sign off with a "shitty" grin because life even with all this crap ain't that bad. 

Saturday, August 23, 2014

Sleep Deprived …

I think that applies to both Prince Austin and I.  I do okay with getting up for the 12:30 and 4:30 am med doses but typically have a hard time falling back to sleep. I can call him a prince because as he deserves to be he is being treated like royalty. Although I am seeing a little more walking around, a little more initiative – instead of me asking what he might need he’s coming to me and asking “Can I have a snack?”

I think we have the pain controlled, no complaints and I’m still only giving the lower dose of Oxycodone, only a couple of times between doses did I have any complaints but the advantage of the lower dose is I can add to it.  No extra doses yesterday.

There is no manual to determine where I go from here, and sadly Austin isn’t really good at relaying if he is in pain or how to rate it, with no complaints I have to assume we’re good.

I was told to give the muscle relaxant twice a day for a few days to prevent possible muscle cramping.  This morning I eliminated the morning dose, I’ll keep the evening dose around for a couple of more evenings and than drop that dose as well.

Depending on how he does today will determine if I start to spread out the Oxycodone dose from every 4 hours to every 6 hours tomorrow.  I was directed to around day five to start spreading the doses of Oxycodone out to six hours, than eight, etc.

Most of the meds are supposed to cause drowsiness but I just don’t see it unless it’s the pseudo affect in me J.

His temp he had the first day we were home is gone, my checks are simple lately, a kiss on the forehead, if he’s cool no worries, if he’s warm then I’ll take his temp.  Still don’t trust these darn digital thermometers with Austin, picked up another simple one and with both thermometers, minutes apart I can get two different reads (I can’t trust him to keep the thermometer under his tongue, and under the arm reads are way off from the under the tongue reads).  I’ve ordered a forehead scan thermometer which will also measure heart rate (that might help me to measure his pain or discomfort – I think I can assume if it’s raised that something is bugging him.)

I had the opportunity to look at some of his labs online the other day from his hospital stay and I can add to my worries that his hemoglobin dropped from 15.2 to 11.8.  I emailed his hematologist and we will do another blood draw next week to monitor it (we were on once a month blood draws, I’m hoping this drop is only a result of his surgery).  We were going to do this on Tuesday but I’ve decided I just can’t wait that long, I’ll take him for a blood draw Monday morning. Praying it will at least be stable or even better that it has gone up.

Genevieve and Dad are in Buffalo for hockey, Natalie’s at work – she should be home shortly and I’m having her bring Austin home a happy meal (life is pretty simple for Austin, a happy meal will make him happy). Once she’s home and settled I’m gonna make a run to find a rinse free shampoo cap, I couldn’t talk Austin into visiting our local salon for a shampoo today and I need to do something.

Life is going on, the world hasn’t stopped, but with sleep deprivation I do think it’s slowed down a little for both Austin and I. 

Thursday, August 21, 2014

The Chronicles of Austin

It’s been a challenging month, not just Austin related.

We had the trip to the ER for his Go-cart Crash, then his crown fell off, which luckily I discovered and the dentist was able to fix, next it was the bat in the house, followed the next day by the epic flood (which many in Metro Detroit had to deal with) and it was capped off a week later, August 17, when Austin broke his arm. In the first 21 years of his life I don’t remember any ER visits, maybe early on there might have been one or two related to an ear infection and children’s Tylenol not controlling the fever but other than that we have never visited the ER.  Since December 2013 we’ve been there four times - hemolytic anemia, allergic reaction to a vaccine, Go-cart Crash and lastly (at least I really hope this is the last time) his broken arm.

On one hand I’m wishing for a magical wardrobe, on another I’m beeotching because at one time I had one, it was called STX209, and because of outdated unrealistic measures to vet out the effectiveness of clinical drugs and no $$$ to carry on it was taken away.

The Sunday night episode started when Austin’s TV was not working. What was our first mistake? Maybe it was mom and dad both in the room with Austin present trying to diagnose the problem, maybe that made it worse, now I wish we would have somehow distracted him, got him out of the room and just took care of it but I can’t turn back time. No matter how hard we tried to reassure him that it was NOT his fault, that it was okay, that we had another TV (thankfully that was up high in the basement and not affected by the flood) he became more and more hyper aroused.  I took myself out of the picture because the last thing he needed was two of us with eyes on him and more verbalization. Dad had stood behind him trying to talk him down, holding his left arm at his side and his right arm behind his lower back.

Hyperarousal with a 5’11” 175 lb male can be rough. As much as I’d like to bury it in the sand, never share it with anyone in reality it’s not something to be hidden away, because I know I’m not alone. I feel shame that this could put Austin in a negative light but it is simply a fact of life in our home and I hope it would not prevent someone from seeing all the positives that Austin does bring to our lives.  Yet, on the negative side, on more than one occasion I’ve been scratched, bitten and/or punched in the face not your typical mother/son relationship. It's very easy for me to forgive because when it happens it’s not Austin doing it, I understand it’s the ugly side of fragile X.  Keep in mind fragile X is a spectrum disorder, not all have behavior issues, but sadly with those who do they can be extreme when they occur. The ugly side when on STX209 it was extremely rare and even after STX209, with the puberty years ending it doesn’t happen as often as pre-puberty or puberty years but it does on occasion rear its ugly head. In the state of hyperarousal one with fragile X can have enormous strength and Austin suddenly twisted his body and the bone just snapped. Jerry is filled with remorse, with guilt and like I wondering “what if”. It was simply a freak accident but that doesn’t take away the blame we feel, the wishing we had a do over or maybe would have approached things differently, and in all honesty we don’t know if any of that would have made a difference. 

Yet I still believe in the era of STX209 this would have been something I would have been able to simply talk him down from but with no STX209 words were useless.

When Austin had his Go-cart crash he demonstrated his high tolerance or maybe I should say his inability to understand pain. I would think a typical individual who would feel that moving in a certain direction hurts, how it feels would stop them from the movement but in a hyperarousal state that is non-existent, he is far from typical.

Dad took him right away to the ER, which only confirmed what we thought, he broke his humerus bone. Monday, thankfully, we were able to get in to see the Orthopedic Surgeon, at the Henry Ford Hospital downtown Detroit, who determined surgery was required. I was once again thankful that surgery was scheduled first thing Tuesday morning, we had to be there at 5:45 am and I didn’t have to worry about him trying to sneak food or drinks prior to surgery.

We left his side at 7:45 am and didn’t see him again until 3 pm. A little delay was because to treat the intense pain after surgery we opted for a nerve block so he wouldn’t feel anything in his arm, it lasts for 18-24 hours. To do the nerve block they needed him to wake up from surgery and move his fingers and thumb, just to ensure that the surgery did not impact his nerves.  Also to better manage his pain they allowed us to stay overnight in the hospital for 23 hours of observation. I took the night shift and once again was pleased that we were downtown because I knew he would have a private room and there would be no problem with me spending the night. My only mistake for me was opting just to sleep in the recliner when they would have brought me in a roll-away bed. 

The 23 hours gave us a better idea of his pain when the nerve block started to wear off (which did so early) so we would have the correct meds to treat it when we ended our stay at the hospital. With Austin we’ve taken an aggressive approach trying to ensure he is comfortable. We left the hospital with four more meds to add to the two meds he already takes on a daily basis.  I had to do a chart for what to dose when because one is once every four hours, one is once every eight, two are twice a day and his typical meds are once a day in the morning. Needless to say the alarm is set throughout the night.

He was very happy to return home and he’s got the best non-licensed care staff between mom, Natalie and Genevieve.

Yesterday he spent a lot of time in his room, he was tired and the pain was still kicking him in the butt. Today he’s much better.  Yesterday I probably drove everyone nuts because he had a slight fever (it was just below the number where we would need to contact the on-call hospital staff.) It did come down as time passed, still a little elevated but not near the call number. Since his splenectomy I don’t take any fever lightly, I was almost in panic mode when from two different thermometers I got two very different reads (under the tongue and under the arm). I actually visited my local pharmacy (one mile down the road) to discuss and they told me to trust the digital – which I still don’t entirely trust I might have to upgrade to a more expensive forehead thermometer just to ease my mind. I am truly a victim of the information available on the internet creating worry, I worry about Sepsis since his splenectomy.

Now I need to help him heal and hope and pray he recovers quickly. In time, I hope I’ll be able to put the “blame factor” to rest, sadly I think it will take a lot of time before I stop re-living Sunday night and thinking of the “what ifs” but that’s my burden, not Austin’s.

Thursday, July 31, 2014

Adventures in Austin-Land

Tuesday Austin had a fun field trip to Midway Sports.

He loved the bumper cars, played mini-golf (which he said he got two hole in ones) and drove a go cart.

The go cart adventure didn’t turn out well since he crashed. With Austin it’s often difficult to determine if something is really wrong or because of anxiety he’s looking for an escape. The staff noticed no visible injuries, and just like I would have thought, assumed that anxiety kicked into high gear and comments made were just his fight or flight response, he was looking for an escape.

He complained about his side hurting and after inspecting his side (by the staff and later by myself) there was no injury evident.  I would poke him in both sides and when I had no immediate response that something hurt or was sore I just let it go.  In the shower I didn’t notice anything but Austin is responsible for washing his privates and other than giving the family jewels a casual glance I didn’t notice anything out of the ordinary.

On Wednesday morning I did ask him if we needed to see a doctor and he replied “no, I’m okay”. When I picked him up on Wednesday, mid-day, I asked the staff if he had complained at all about his side and one staff member said “Yes, on and off all day”.  Keep in mind it’s still difficult to gage because Austin often follows his complaints with an “I’m okay” or “just kidding”. He never cried and we never had any real indication that he was in severe pain. Still, at that point I had decided I would make an appointment first thing in the morning.

We had a few complaints in the early evening but nothing that made me really concerned.

When I got him into the shower I decided to do a thorough inspection and found high up between his legs, hiding behind his testes there was massive bruising, and it looked bad, bad enough that I decided I couldn’t wait until the next morning for him to see a doctor. Keep in mind Austin’s history, he had a splenectomy in December and I’m still not sure how that will impact his future health and now I often try to err on the side of caution. I hoped to get him into urgent care but I got there at 8:15 p.m. and didn’t know urgent care closes at 8 p.m. so our only option was the ER. Before I left the house I let Austin pack his bag, he packed everything he had with him when he was in the hospital in December, Mickey, Minnie, a power ranger, the touchpad and his Nintendo – I just smiled and let him bring them all along.

I was baffled that he never pointed to his privates as being sore, never touched them but then I remembered a conversation we had just this weekend about socially appropriate behavior. A friend had a sad experience with negative social behavior in public recently and it was an important reminder for me to stay vigilant with Austin about what is socially appropriate, what we can do in public and what we can do in private.  To put it bluntly I reminded him that grabbing himself or touching his penis at any time should only be done in private, this discussion took place on Sunday.  Well come Tuesday mom’s words were still fresh and in a situation that any normal male might have been rolling on the ground holding and grabbing himself in public, I think Austin remembered my words “we never ever touch our self in public, this should only be done in private, in private places like your bedroom or the bathroom”. We also had the other discussion as to who could touch him in the privates, who he could show his penis to, i.e. a doctor. Now this clearly makes since to me, I probably should have asked him to show me what hurts in the bedroom or bathroom, maybe I would have seen the bruising sooner because the other attempts to figure out what was going on were done in the living room and kitchen, all considered public places.

On a side note, July is Fragile X Awareness month, so I created a little more awareness with medical staff who had never heard of fragile X, no surprise to me, I’ve been working on awareness since 1997. As always I had to demonstrate how Austin may just answer how he thinks you want him to answer and if he doesn’t really know what you’re asking he’ll just say anything and not tell you he doesn’t understand what you are asking.  This was quite easy to demonstrate when the nurse asked “Are you in a lot of pain or are you in a little pain? He responded “a little”.  Then I asked “Are you in a little pain or are you in a lot of pain?” He responded “a lot”. So I pointed out to the nurse that we can’t trust his answers, he’ll respond with what he thinks you want to hear or repeat the last of the choices.

I just about died when the nurse asked “Do you feel safe in your home?” and he responded “No”.  Really with the extensive bruising in his privates I was clearly concerned with how the staff might respond, I could visualize a visit from Child Protection Services (or at his age maybe it’s Adult Protection Services) all because Austin didn’t really understand the question being asked. It comes down to defining what does “safe” mean to Austin.  Safe might mean to Austin that Dad isn’t hiding under his bed or in his closet to scare him, or Genevieve, or Natalie, aren’t hiding around a corner just to make him jump and scream like a girl.

Triage went pretty quickly but then we had to wait in the waiting room for a bed to open.  When an entire family came into the waiting room wife, husband, mother-in-law and two young children I was ready to wait in the parking lot.  I still don’t understand what they were thinking bringing young children to wait in an ER waiting room.  Strange family in appearance to put it politely - the mother-in-law was dressed in a Hijab yet the wife dressed like a hooker –what a strange combination. The youngest screamed on and off while the husband was being seen in triage – turns out he was stung by a bee, after triage they just told him to go to the drugstore and buy some Benadryl. Reminds me of Austin’s dilemma with “safe”, what one person considers an emergency another doesn’t.

Our adventures didn’t end there. I truly wonder about the purpose of HIPAA and how often it is violated in an ER, why does it even exist?  We overheard numerous results of pregnancy tests, STD tests and the use of the Contraceptive “Plan B” along with some detailed family history. Through it all Austin was paying attention. Oh my goodness, I was between dying of embarrassment and bursting out in laughter when he did ask me what is a STD; what is Plan B, LOL.  I whispered quietly that we’d talk about it later and please use a quiet voice, a library voice, because people here are sick and they are trying to sleep and get better.

They did some blood work, gave him an IV, added a little morphine (his blood pressure is always a solid indication if he could be in pain, if it’s elevated it means he typically is) and had a CAT scan with contrast.

The blood work showed that most counts were normal but his white blood count was elevated, the doctor said that might only be a result of his body trying to repair and recoup from the injury. Thankfully the CAT scan showed no internal bleeding, just swelling in the bruised area. We were discharged and will follow-up with his primary care physician next week.

He’s home today, I wanted to give him a little time to be quiet and be not so active, give his body time to heal. And of course, it’s all thumbs up according to Austin, he says he’s okay. And, if he’s okay, I’m okayJ.

Wednesday, July 9, 2014


Vacation week is over and for me it didn’t really feel like a vacation just a change of scenery at the lake.  That’s the downfall of not working, there doesn’t seem like there is a vacation. Once I returned from the lake there has been a lot to full-fil my OCD tendencies, trying to get everything back in order from the kitchen counter top and back splash demo. No time to blog/write. And now I need to take the next step, can I save the old wet plaster walls – that’s gonna create a lot of dust no matter what we do save them or replace them with dry wall.

Austin’s numbers from his now monthly draw look good, hemoglobin is at 15.2 (last one was 15.3), that is the true purpose of this entry just to do an Austin update.  He started his summer program with VIP this week so he’s busy and very excited about going to Turtle Cove tomorrow (boy I give the lovely folks at VIP a lot of kudos, a water park field trip with children and young adults with various disabilities, they are so awesome).

Maybe when I get everything caught up (LMAO) and the FXAM Quarterly Newsletter done I’ll do a serious blog J This is really rather funny because once I get this all done it will be time to prepare for Genevieve's hockey trip to Boston - now that might be a little vacation time for Gen and I. 
Jon and Owen came up for a visit on Monday and Tuesday

Just like his dad, he loves to fish!

Monday evening Jon, Owen and Genevieve took the pontoon out fishing. 
The summer place, if I count the time my parents owned their place (just across the road from mine) when I was young, next year I will have spent 50 years at Vinings Trailer Park - my goodness I must be old

Thursday, June 26, 2014

Is Summer Vacation an Oxymoron?

ox·y·mo·ron noun \ˌäk-sē-ˈmȯr-ˌän\

a combination of contradictory or incongruous words (as cruel kindness); broadly :  something (as a concept) that is made up of contradictory or incongruous elements

I’m not sure about you but lately I don’t feel like I’ve been on vacation, the summer has been very busy, long days of working hard and a few days (or should I say hours) of playing hard. Since I quit working in 2001 it’s often felt like I’ve not only lost my house cleaning team but I lost vacation days and paid holidaysJ.

I know it’s been sometime since I’ve done an Austin update so before time gets away from me again I thought I’d do a quick update. Really not working is not boring there are still a few days when it feels like there is never enough hours in the day to accomplish all that I want to do. And through it all I don't try to live my life through my computer and phone, there is so much more to life than emails, texts, facebook, twitter and all that other stuff that has little impact on those around you, which in the end only takes me away from the present and building those future memories.  

We had our appointment in Mid-June with Hematology, all numbers in his CBC w/differentials look good. Knock on would – we haven’t seen any of the complications associated with a splenectomy. As of our appointment we only have to have blood draws once a month now, next one will be July 8, just one more thing to put on the big calendar of life to make sure I don’t lose track of when the last one was done and when the next one is due.  When it was once a week I didn’t have any problems remembering.

Remember I am a “senior in training” so I’ve got these little quirks occasionally when I’ll walk upstairs and forget what I went up there for, walk all the way back down and then remember what I was going to do.  I call this “senior exercise” when you have a two story house with a basement.

I’m starting to plan Gen’s next hockey trip, in less than a month we will be in Boston for another tournament, we are both looking forward to this trip, we had so much fun last year, and for me it’s a great break from routine in the middle of summer.  Then I looked ahead to August and was surprised that driving to Vermont isn’t really much further than Boston (as long as we hit the Toronto area at the right time as we cut across Canada), and after making those two trips Stoney Creek – Ontario, Cleveland – Ohio and Ottawa – Ontario (two tournaments in September and Ottawa is the first one in October) should feel like a walk in the park.  I’ll cover as much as the fair weather traveling as I can and I’ll leave Jer with the snow storms.

And now it’s 9:40 p.m. and as a “senior-in-training” I think I’m going to call it day. Even though I don’t have to get up early sometimes I’m wide awake and ready to go at 6 a.m. I think that comes with age too.  You’ll really know I’m getting this down pat if I make Gen go to dinner at 4 p.m. in our travelsJ.  I figure in a little over three years when I turn 60 I should have this down pat

Good thing “Hair is for dying, and Life is for Living”