Momma Bear and The Sensory Kid

Miracle Man has always had sensitivities and "quirks". For instance, the textures and temperatures of foods affect whether or not he will eat them.  He refuses to eat chunky or chewy foods, but likes softer textures.  So, I can get him to eat hummus and guacamole (I know, right?!?!), but I have a hard time getting him to eat avocados, beans, or apples.  He will eat smooth yogurt (even plain greek), but if it has real fruit in it, he won't even let it get past his lips.  If one smidgen of chunky food gets in his mouth, he spits it.  Right. Back. Out.

When he was much younger, I could not vacuum the living room or turn on any appliance that sounded anywhere near  as loud as a vacuum.  If I did, he would start shrieking and screaming his head off. It scared him to death! So I used to vacuum around his sleeping schedule. Luckily, most of the time...if he was sound  asleep...he would continue snoring away and I  would be able to get the crumbs and dog hair off the floor.

It could get tricky, though, on days when I needed to vacuum several times throughout the day...instead of only  during naptime. You see, we had this rug that seemed to magnetically or cosmically attract every.single.speck  of dust in the entire  house, plus the neighbor's house. Tragically, it used to need to be vacuumed sometimes up to three times a day! With Miracle Man's sensitivities, if I needed to vacuum while he was awake, I felt like I was      tOrTuRiNg      him.  He would scream and cry hysterically, and it was extremely difficult to soothe him. Typically, when he was upset like that, he wouldn't calm down for at least an hour.  So, as a busy mom already strapped for time, sometimes I had to choose between keeping the rug clean of debris and the meltdowns that ensued, or letting go of the mess and keeping Miracle Man feeling "safe".

As the vacuum-phobia-screaming thing continued, it also escalated.  There came a point that whenever Miracle Man even saw  the scary-loud-sucking-up-apparatus, he would fffrrrreeeeeaaaaakkkkkk out...before I even turned it on!! We needed to find a solution so that I could vacuum with Miracle Man around.

So, with the help of his therapists, we tried to desensitize him to the sights and sounds of this machine that I , for one , am in complete awe of.  I must digress here for a moment because this is a topic that I think about all.the.time...I absolutely love vacuuming!  Well, not the actual lugging around, sweating, hard work part of it.  But, I am always fascinated by how AMAZING that invention is!  I mean, whoever came up with that thing is like my BFF for life!  I marvel at its awesomeness whenever I plug it in and begin sucking up dust, cheerios, powdered sugar, cat fur, cat puke, crazy loom bands.  Ooooo!  I love ,  and I mean LOVE vacuuming up those !  It gives me this twisted sense of satisfaction to just...zooooppp them up!  Gone!  No longer all over the floor!  Hehehehe!  (insert evil grin here)  You simply cannot deny that the vacuum is totally AWESOME! 

Anyway, back on topic...so to desensitize Miracle Man, we would have him in one room with the therapist and me in another room with the vacuum.  We would start by telling him that I was going to turn the vacuum on and then gradually bring him closer to me.  Each time a therapist was here, we would work on this, getting closer and closer to me, and then finally bringing him into the room where the vacuum was. In the beginning, we also would cover his ears when necessary. Over time, we would have successes, and then failures. But for the most part, the desensitizing worked. I was once  again  able to turn on my fav machine and go to town on those dust bunnies, dried up pieces of scrambled eggs, bits of pizza crust, Lego pieces (sacrilegious, I know), you name it!

We were so successful, in fact, that for quite a while now, Miracle Man has been able to handle the sounds of things like the vacuum or the blender like a champ, especially if I preset him (tell him ahead of time that I'm turning it on). I usually also preface it with a countdown of three so that he knows exactly when the noise will begin.  But our success was so profound, I could even vacuum right.next.to.him! 

Over the past month and a half, though, he is having a tougher time with his sensory processing. He is back to screaming and shrieking when the vacuum is on.  And it seems like every day, Miracle Man is having a harder time with noises. He has begun covering his ears for every loud sound he can hear, like the garbage truck going by while he is outside.  And while he is covering his ears, he is telling us, "Loud.  Loud.  Loud." 

Too, we just got a door alarm for the house because we're worried about the kiddles finally escaping to find a better set of parents. Naturally, whenever the alarm goes off, Miracle Man covers his ears and says, "Horn. Horn. Horn." It takes him several minutes after the "horn" is done before he stops covering his ears and he can move past the disturbance. His hearing (or his processing of what he hears) has gotten incredibly sensitive! 

On Father's Day weekend, we tried bringing the whole family to the fireworks.  Big Mistake.  Big. Although we had anticipated some  anxiety, we weren't completely prepared for his reaction.  He shrieked and screamed so badly that it was clear to us he was being Harmed.  We kept trying to move away from the blasts of beauty to find a better place to be; a place where he couldn't see the lights.  We ducked behind a tractor trailer next to the midway of the town fair we were at.  He continued to scream, and he looked...Terrified!  We covered his ears and moved still further back. Now, you should know that when Miracle Man has a seizure, his eyes get all funny-looking and his pupils dilate.  His eyes just look so...different . It makes him look like a different child. Well, at the fireworks that night, he started to get "that look" all over his eyes. We were very nervous, and he was so distraught, that we ended up heading to the car.

Safely inside the car, the booms and bangs were muffled, and the lights were hidden from view.  Miracle Man began to settle down a bit, but he was still fretting.  It was very scary to see him like that. And even though I had anticipated him having a hard time, I didn't expect him to freak out quite so badly.  My nerves were shot.  Momma Bear had had that fight or flight reflex.  It took a long time for the adrenaline coursing through my body to subside.  I have since decided that we need to get him a pair of those sound-deafening ear muffs.  We will probably also use sunglasses when there is so much visual stimuli in the future, as well.  But, man!  Times they are a changing for our family!

So, the next day, we were headed to a car show and Prince Charming wanted to wash our car before going there. We brought it into one of those automated car washes, and within seconds, Miracle Man was having the same expression on his face and that same shrieking-screaming-I'm-terrified reaction. It was so bad that I had to get out of my seat and climb into the back seat with him where I could cover his eyes and his ears to block all of the sensory stimulation. Again, he had that same "look" in his eyes that he gets during a seizure.  And again, there was a very worried momma.  Naturally, once we exited the car wash, he calmed down.  It took quite a bit longer than that for his momma to calm down~especially since it was the second day in a row! ;)

It seems these episodes are becoming more and more frequent.  For example, we recently went out to an old-time ice cream shop. There was a painfully long wait with the kiddles, and then it was finally our turn to be seated.  The waitress brought us over to our table and above our table was a fan. The way the fan was positioned, it broke up the light on the table that was coming from the lamp next to the fan. This setup created a strobe light effect and, once again, Miracle Man started to "freak out".  I thought he might have a seizure.  Luckily, I spoke with the couple who had been seated next to us at the same time.  I briefly explained the situation and they had no problem at all changing tables with us. We were very  grateful  to them!  We were able to sit and relax a while. And we definitely enjoyed our marvel-licious ice creams from the safety of our new booth!

Now, it's not just his hearing that has become super-sensitive.  So has his sight.  The lights in our house that didn't use to bother him at all, for instance, suddenly do. One morning we laid him down on the living room floor to change his diaper, and the light overhead was bugging him.  He was starting to get upset to the point where we had to turn off the light to complete the diaper exchange.  There have been several other "insignificant" moments where Miracle Man has reacted to lights lately. But none of them interesting enough to continue this paragraph. So this paragraph is done.  The End.  (I feel like a second grader. Lol)

I have always felt like I've been on hyper alert with Miracle Man. But lately, it seems like I have to be much more aware of sounds and lights and things that could upset him. That also means that bringing him to things like the movies is not likely to happen anytime in the near future. As I said earlier, I will probably be getting the noise-deafening ear muffs sometime soon, but in the meantime, I have to be very vigilant about what he is exposed to that might set him into a panic.  I am also anxiously awaiting a return phone call from his neurologist to see if he has any more input for us.  Until then, I am Momma Bear and I wait in the forest...watching from afar (but not too far), allowing him to navigate his world with some independence, but ready to attack those lights and sounds at a moment's notice!  RoAr! 

Yours from the Forest of Mommyhood,

Marathon Momma

An MRI...Or Not An MRI? That is the Question!

After the unsuccessful attempt at a sleep study in early January, we were rescheduled for another one.  This one would be just a couple of weeks later in the hope that Miracle Man would be more accepting and tolerant of being all hooked up.  I preferred rescheduling sooner, rather than later, thinking that if the first attempt was recent enough to the second one, perhaps he would remember, "Hey!  I did this before!"  Then maybe, just  maybe , we would make it through the second one?

In the meantime, Miracle Man had had an MRI scheduled for the end of January and that had been scheduled for several weeks already.  Now, in my world, the age-old cliché "when it rains, it pours," seems to be the standard for how our schedule goes.  Well, low and behold, the new sleep study was scheduled for the day after Miracle Man's upcoming MRI.  Of course.

No big deal, though.  I just go with the motions.  Keep on keepin' on!  So the MRI was our next BIG adventure.  When an adult has an MRI, it can be challenging for them, depending on their ability to deal with the close proximity of the walls to their body and their threshold for managing the strange noises that come from the machine.  But I will tell you, it is definitely much easier  for most adults to have an MRI than a 2 year old.

Now, don't get me wrong...I have had a couple of MRIs, myself, and I tend to be one of those    claustrophobes    that panics before...and during the test.  I was lucky to have one of my closest friends drive me to my last one, though.  And this was especially helpful to me because it meant that my doc could prescribe something for me to help me relax enough to complete the test.  So, as an adult who has a difficult time sliding into the DREADED TUBE, I completely understand how difficult it would be for a small child.  Naturally, then, when the pediatric neurologist informed me that my son would need to be sedated for the test, I was completely on board. 

The plan was to use an anesthesia that would require him not to eat or drink past a specific time.  I knew that would be difficult for Miracle Man, and so I carefully planned out every detail of his meal the evening before, as well as his sleeping and waking times so that I could make sure we followed the rules.  We needed to make it to the hospital for an 8:30 am check-in, and it was my job to make sure he didn't have ANYTHING to eat or drink! 

We were completely on schedule that morning and I had done everything I needed to do with him to make sure we were following the necessary requirements.  All rules followed to a "T"!  The only thing I had left to do was to warm up the car so that my little guy wouldn't freeze his tushy off on the way to the hospital.  I carried Miracle Man into the living room, all bundled and ready to walk out the door, and rushed out to the car.  I was out there for less than a minute!  ONE  itsy bitsy minute!

A little digression here...One thing you should know about Miracle Man is that he perseverates on things.  If I haven't said it before, it is one of his "quirks".  He will find some specific activity that he enjoys and he will repeat it incessantly.  There is literally NOTHING I can do to stop him from doing whatever that activity is--believe me, I have tried EVERYTHING !

So, in every single room in our house, there is one particular thing he does over, and over, and over again,     every.single.time     he is in that room.  There is some type of connection for him in each room.  I cannot explain it.  I don't fully understand why.  All I know is that he obsesses over these particular things.  For example, in our living room, he is obsessed with turning the XBOX on and off, on and off, on and off.  Every time he enters the living room...even to this day, he turns the XBOX on and off.  All day long.  (Unfortunately, our TV stand does not have a place to hide the XBOX from him.)  In the kitchen, when Miracle Man is at the kitchen table, he throws his food on the ground.  Every meal.  Every  day .  Ever since he has been eating table food.  No matter what course of action I take.  It never changes.  EVER. 

Miracle Man's perseveration even happens outside of our home, too.  When we visit different people's homes, for example, he immediately gravitates to that one thing in each room of their home that he is obsessed with.  When we visit one of my closest friend's, he walks in the door and walks right over to their TV and turns it on and off, on and off...you get the picture.  Yes, Miracle Man loooooooves electronics!  Anything that makes noise and lights up...instant gratification at its best!

Okay, so you get the perseveration, right?  What does that have to do with the MRI, you ask?  Well...do you remember when I said that I went outside to warm up the car for less  than  one  minute ?  And do you remember the very STRICT rules of NO FOOD and NO DRINK...that I carefully followed to a "T"?  I am sure at this point you have guessed what happened...you just need the details to complete the picture in your mind...so here they are:

I walked back into the house to get Miracle Man and head to our long-awaited MRI...only to find my obsessive-compulsive little toddler shoving a fistful  of cat food in his mouth.  Uuuuuuuugh!!!  Are you kidding me?!?!?!  What the heck do I do now????  I only had to MOVE MOUNTAINS again  for this appointment to work out as scheduled! That's all. No big deal (insert heavy sarcasm here).

So, cat/dog food is just one of those things that Miracle Man perseverates on.  Any time he is near cat food, dog food, or the water dishes, he simply must eat the food and play in the water.  He cannot  stop himself.  And I have tried like only a      bazillion-and-one     times to change that behavior.  But it just is part of who he is.  For now, at least. 

Unsure what to do next, and not knowing if and how much he may have ingested, I was in a pickle.  It was too late to call and cancel the appointment.  And...there was always... what if they would  take him into the MRI?  I packed him into the car and headed to the hospital. 

We arrived at the hospital on-time and checked-in.  He was all registered and waiting when the nurse came over to me to discuss the details of the steps we would be taking during the MRI.  At this point, I informed her about the morning's CAT FOOD EVENT.  And, naturally , they wouldn't take Miracle Man in for the MRI once they heard that he had "eaten".  Miracle Man's MRI was immediately rescheduled and we were sent home.  Now, if you're keeping score, that would be 2 failed tests in a row...in a matter of about 2 weeks.  And 2 major  juggling acts of children and schedules...that were somewhat fruitless efforts in terms of getting the answers that we need about our son.  Bummer!

It was definitely frustrating...but it also ended up being a really good thing...because I had some ultra  important  personal business to take care of...that I wouldn't have been able to do, had we had the MRI after all.  Instead of dwelling on the fact that we didn't accomplish the MRI, I left the hospital that morning thinking about how funny life is...how some seemingly  difficult circumstances can actually turn out to be for the best.  To this day, I thank God that Miracle Man ate that handful of cat food.  Having the time to take care of what I needed to that day ended up making a huge difference in my life!

Of course...we still needed our MRI...and the second sleep study...but that would come the very.next.day.  And that, ladies and gentlemen, will be the subject of my next post!

Oh, and by the way, the first thing I did that week when I had a moment to go to the store was to buy another baby gate and install it on the entryway to the laundry room.  Cat food, dog food, and water dishes are now permanently in the laundry room...Problem solved!  (Except when I forget to latch the gate and the little devil sneaks in there before I notice!)  I may not be able to change him, but I can definitely change what he is allowed access to!


Wishing you sunshine and rainbows,

Marathon Momma

Dreamland..Or Bust!

To try and sum up the past few months for Miracle Man seems a daunting task.  We have been to countless doctor's appointments, had several rounds of blood taken, and several different other types of tests done on my poor little guy.  He has made progress, and had setbacks.  There is just sooooo much to share that I think the easiest way for me to do this would be to take it one step at a time and update you over the course of several different posts.

So...Miracle Man has been having a real difficult time with balance.  And it has been extremely challenging figuring out the source of the difficulties.  We thought the tubes being placed in his ears would help with the balance. And, while it did  make it easier for him to hear better, the balance issue has only seemed to have gotten worse over the past six months.  In addition to his lack of balance, Miracle Man has been extremely lethargic.  He has difficulty staying awake, paying attention.  He yawns all day long, regardless of how much sleep he has had.  Too, he wakes frequently throughout the night.  With all of these factors coming into play, we were sent by the neurologist to have a sleep study done. 

We met with the doctor at the sleep/wake clinic and she concurred that a sleep study would be helpful in finding answers to our questions.  So a sleep study was scheduled, and in January, Miracle Man and I went to the sleep clinic for the study.

It was a very strange experience, if you've never been to one before.  It was sorta like going to a hotel.  But also sorta like being in a hospital.  And a bit  like being in a fishbowl, too.  When we first arrived, the technician that would be performing the study showed us our room, which was setup very much like a hotel room.  There was a bed, some nightstands, a few chairs (one of which pulled out into a bed), a wardrobe to store your personal belongings, a tv, and a private bathroom. 

Once we settled in, our technician came back into the room and explained how everything would go.  He explained that Miracle Man would be all hooked up with wires and electrodes and that while Miracle Man and I were sleeping, he would monitor the data, as well as listen to the sounds coming from our room.  He said that if we needed anything, we could just talk to him as if he were there in the room because he could hear us.  Hmmmm...that's a bit strange, but okay.  Naturally, our technician then proceeded to tell me about how he would also be monitoring Miracle Man's movements through the video camera.  Ummmm...wait !   What?!?!  Okay, now that's a bit downright cReEpY!  Of course, we were  there to gather information on Miracle Man's sleeping patterns and habits, but I was not so sure about how I felt about that video thingy...considering I would be sleeping in the room, too!  We needed the data on Miracle Man, though, so it left me with no choice but to be monitored in my sleep, as well!  Yikes!  I felt compelled to tell the technician that I don't snore very often, but to please let me know if I do or if I don't...one way or the other I needed to know... because Prince Charming likes to tease me that I snore allllllll the time!  (For you curious cats out there...no, I didn't snore that night!) Yipppeeee!!

Once we got through the explanation of the procedures, our technician began bringing in wires and electrodes to attach to Miracle Man.  My little guy actually handled it waaaaayyyyy better than I thought he would!  He sat calmly on my lap while I read to him and the tech hooked him up.  And I was beginning to think this might actually  work!  The tech attached all but a few of the wires and devices, leaving the ones that attach to the face until Miracle Man had arrived safely and soundly in Dreamland. 

Well, as fate would have it, just as he was packed, seated, on the runway, and ready for take-off, our technician tried attaching the remaining wires and the wheels of the plane came to a screeching halt.  There was simply NO WAY Miracle Man was going to continue on his blissful journey to Dreamland!  He did not like the newest attachments one bit!  Of course, could you blame him?  I wouldn't be able to sleep with all of those things hooked up to me, either!  In any case, once Miracle Man realized what was happening, he began pulling off the wires that were on his face.  And, naturally, what do you expect happened next?  Yep...he became aware that 1) he did not like having ANY of the wires or electrodes attached to him, and 2) that he could simply pull them off!  Screeeeeeech! 

And that was pretty much the end of that sleep study.  We were told at this point that there was no use in continuing the study with Miracle Man since the doctors needed to have at least 6 hours of data.  Considering that we had to finish the study by 7 am (and it was well past 1:30 am now), it wasn't going to happen.  We would have to reschedule. Bummer!  After all, it is really challenging arranging everything to make it possible for just me to take just Miracle Man somewhere and have the other children taken care of!

Secretly, though, I was not disappointed in the least!  Even though I didn't get very much sleep that night, and even though it was difficult to arrange the scheduling of everything, being there with just.one.kiddle felt like a...VACATION!  Hahaha!  So schedule another sleep study you say?  Sure thing!  ABSOLUTELY!! Sign me up!  (Yes, I do realize that's a sad state of affairs right there!)

Heading off to my own Dreamland now,

Marathon Momma

Blue Eyes

In my last post, I wrote all about my twin son, Chub-Chub and how he is developing so well.  My other son, Miracle Man, on the other hand, has had so many struggles over the past two years.  Of course, you may have read all about his heart surgery at 7 weeks old.  Well, since that time, his heart has been doing fine.  He still has a few heart issues that continue to be monitored, and at some point in his life (possibly when he's an adult?), he will have to have another heart surgery.  But, right now his heart is functioning properly and he was cleared by his cardiologist to do anything!  Yay!!

More recently, though, Miracle Man has been diagnosed with developmental delay.  At first, I really didn't understand what that meant.  And, truthfully, it is a diagnosis that means different things for different people.  It depends on each individual child.  For Miracle Man, it has meant (so far), that he started receiving speech therapy and physical therapy right after he turned one.  And at the time, he received each of the services 2 times per week.  After the first month or two of therapy, he had made many gains and we were all very proud of him!

About another month or two later, I noticed that he had plateaued and I requested an increase in services for him.  We are very  fortunate  in this difficult economic time, that the county we live in provides these services for free , and that they will do whatever they can  to see that the children with special needs receive all of the services that they should have.  So, an increase in speech therapy to 3 times per week was granted.  And we were grateful and thrilled!  

By the time Miracle Man's 6 month evaluation came up, however, he hadn't made very good progress, even with the increase in services.  So now, we headed on down the path of "Plan B", which meant that, in addition to the 3x/week of speech and 2x/week of physical therapy, Miracle Man would also start receiving occupational therapy 2x/week, special education 1x/week, and  he would begin attending what is called a Toddler Playgroup 2x/week for summer school.  Whew!  That's a lot  of appointments to keep track of...especially if there were any changes in the schedule!

For the entire spring and summer this year, our lives revolved around Miracle Man's schedule.  Sometimes it could get frustrating, because it was difficult to meet the needs of Chub-Chub and Little Miss, while  meeting Miracle Man's.  For instance, trying to fit in fun summer activities for my other children around his hectic therapy schedule was very challenging.  We did do things like attend our library's weekly story hour and go geocaching; and we were  able to make it to a museum and to the park a few times over the summer. But many  of our original "fun" plans had to take a back seat.  Miracle Man needed his therapies, and it was our job to accommodate him and give him everything he needed to make gains.  And he really did  make gains over the summer!  Naturally, we are very grateful to the county we live in and all of the wonderful therapists who have worked with him along the way.  And I feel it is important for me to say this:  I am NOT, by any means complaining...merely stating what our  life is like with our child who has developmental delay. 

Throughout the spring and summer, Miracle Man also had many doctor's appointments going on, as well.  We had started seeing a developmental pediatrician several months back, and had a follow-up to go to.  The cardiologist was on the schedule, as well.  Additionally, Miracle Man saw an ophthalmologist, and had some additional testing done through the geneticist, which I will discuss below.  Geesh!  Just keeping track of all of his doctors, therapists, and appointments can be overwhelming at times!

In addition, around the time of Miracle Man's 6 month evaluation, he had also started having seizures, so that necessitated a trip to the neurologist.  It also ultimately brought on:  a sleep-deprived EEG and an MRI.  The EEG ended up being "normal", but that was to be expected, since he didn't have a seizure during the test (and I had figured he wouldn't have one because his seizures seem to coincide with a bump on the head).  The MRI, however, showed fluid build-up behind his ears, and a smaller-than-normal pituitary gland...aka More Blood Work!  This poor little guy was tortured this summer!  :(  As of right now, the pituitary gland is functioning normally, Thank  Goodness !  But, it is something that will have to continue to be monitored over time.  As far as the fluid behind the ears was concerned, we had to make an appointment with an ENT, which took place earlier in the fall...and resulted in tubes being surgically placed in his ears. 

Anyway, with the delays we were seeing and all of his medical needs, his therapy team agreed that he should attend the Toddler Playgroup 5 days a week in the fall.  Originally, I was supposed to go back to work in the fall, but Miracle Man's schedule necessitated a request for an extended leave of absence to care for him.  Luckily it was granted, something for which I am/will be eternally  grateful !

So, since Miracle Man was born, he has had birth defects, many different developmental delays, the seizures, and he also has some sensory processing issues.  For example, I simply cannot vacuum around him.  He completely FrEaKs out!  And then he is inconsolable for quite  a long period of time.  Anyway, despite all of the concerns the doctors have, he is still a mystery to all of us.  We do not yet have a diagnosis for him (other than developmental delay).

Throughout the spring and summer, I was in constant contact with the geneticist's office while they were trying to fight our insurance company for approval of a specific genetic test.  They were looking into a something called Greig Cephalopolysyndactyly syndrome.  Being a rare genetic disorder, there was very little information about it on the internet, but what little I did find seemed like it could  fit the bill.  Once we finally got the approval from the insurance company and had the blood work done, it was a matter of w.a.i.t.i.n.g. for the results.  It took a few weeks and I held my breath when the geneticist called me and told me...it was....negative !

Great news, right!?  Well, not exactly.  You see, the problem is that, although he didn't have this particular  syndrome, the doctors are all convinced that he does have some  syndrome.  So now we are back to the drawing board, trying to figure out the mystery of my little Miracle Man and what it might mean for his future.

Regardless of what that syndrome ends up being, Miracle Man is such a blessing!  He is an amazing little guy with such a sweet personality!  He is laid-back, loving, innocence...with *bright* blue eyes...the kind of eyes that make your heart melt.  And his smile and magical laughter can light up the room.  He is the happiest little toddler I know!

Until next time,

MM