The Sound of Silence

A rough several months have gone by without a post from me. I think I should probably explain why I don't write very often. You see, I have always hated complaining. For me, it's kind of like that saying, "If you don't have something nice to say, then don't say anything at all." While I do know that saying is not intended for this purpose, it still feels appropriate to me. When I'm having a flareup or things are really difficult and there are many challenging things happening, I don't want to keep writing about the negatives and how difficult things are.  So I usually try to write posts that are upbeat or uplifting in someway. Even if it was a difficult time, I try to find the positive in the situation or else I will try to write about something that I think is humorous. So when you don't hear from me for a while, it usually means that I'm not doing too well, and I'm having a difficult time finding something positive to write about.

The truth is, though, the last couple of months have been extremely difficult. Things of been crazy with Miracle Man, Little Miss, Chub Chub, and myself.

Miracle man is doing well in school in a lot of ways. He has made huge gains in several areas, especially with his speech. But we are still struggling with a lot of things as well. The good news is we are finally getting a chance to go to the Epilepsy Monitoring Unit at the local hospital. This is something that we have wanted to do for at least a year, and now we finally get to go.

The major catalyst for this opportunity is that Miracle Man had an episode while he was at school recently. He was sitting down at the table and the teacher's assistant was talking to him, but he wasn't responding. When she looked at him, his eyes were rolling into the back of his head. Next thing she knew, he had fallen off his chair and bumped his chin. This was the first type of seizure that we have seen where he didn't hit his head hard before having one. So, on the one hand, it's scarier and more frustrating that he had one without bumping his head first. But on the other hand, now we get to finally go to the Epilepsy Monitoring Unit and hopefully get at least one diagnosis. He is 3 and a half years old and he still does not have any diagnosis other than developmental delay, even though every one of his doctors believes he has several things going on. Having at least one diagnosis would be great!

We will be doing this in a few months. I do not have the appointment scheduled yet. I have to wait for them to call me. But, when we do get to go, this is how it works: I will take Miracle Man to the hospital and he and I will camp out there in the room. The entire time we are there, he will be hooked up to electrodes to run a long-term EEG. We will stay there for up to as long as a week. Hopefully we will get some concrete data to prove that he is having seizures during that week.

I am really glad that this whole experience will be in a month or two, and not right now. For those of you who don't know me well, or don't follow me on Facebook, my daughter was just in the hospital for a week. She had a pretty severe kidney infection. We are extremely grateful that she has healed well and is doing much better. She has to go to the urologist next week to have some testing done, and we are hoping that everything comes back normal.

In any case, it was a terribly difficult time on our family while she was in the hospital. It will be much easier the next time I am at the hospital with one of our children for a lengthy time because this time it will be planned. We will know far in advance that I will not be around at home to help out with all of the other kids and pets!

All of the stress and extra work over the past several months has really taken a toll on me. My body is barely making it through each day. I am extremely fatigued at this point. In fact, This week I have been struggling with getting out of bed pretty much at all. One morning, Prince Charming had to get everybody out the door without any of my help.  I simply couldn't get out of bed.

And my pain level has been high as well. Everything hurts. My legs, my ankles, my feet, my hips, my back, my arms, my shoulders, my hands, everything.

When I was in graduate school, I had developed carpal tunnel syndrome. I had to wear braces on my wrists for quite some time. But once I was out of school, everything resolved on it's own. I wasn't typing like a fiend anymore, so my wriss and forearms were able to relax. I haven't had this in a very long time. It's been about 15 years, actually. But, now it seems to be back with a vengeance. My wrists and forearms are so bad right now, I'm having trouble holding anything even as heavy as my phone. I am also having trouble writing, twisting knobs, grabbing at things, and of course typing. This entire post has been dictated so that I wouldn't have to type. Buckling car seats are a particular challenge for me. I try to not have to go anywhere if it means I will have to buckle the boys into their car seats. It is really annoying, quite frankly.

So there's a little snippet of the difficulties, but I do have another positive! Over the last few weeks, I have found a whole community of people out there online who are suffering through fibromyalgia, just like me. I am making friends and connections through Facebook and other social media outlets. This has been extremely helpful to me. Knowing that I am not alone is just  huge. And reading my very own thoughts in other people's Facebook posts has been affirming. I cannot believe I didn't search for these forums before. But, I am extremely grateful that I have them now! And, by opening up to people, I have learned that there are people that I actually know who have this illness as well. I am looking forward to learning a lot from people who have been going through it longer than I have.

That's all for today. No more energy, no more time. I hope you're all having a good week! 😉

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

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

Uh-oh, Spaghettios!

The first seizure my son had was the    scariest      thing   I.had.ever.seen..in.my.life.   It even topped seeing him after his heart surgery, lying on the hospital bed, asleep and all helpless and limp, with wires coming out of him everywhere.

I had just fed the children...with  spaghettios ...because it was just-one-of-those-nights when I felt that was all I could handle preparing after the long and stressful day I had had.  Naturally, my intuitive little creatures decided to *help* me handle that stress even better...they dumped their bowls all over their heads and proceeded to "paint" their faces with those little-round-things-in-RED-sauce!  Great.  Just  great .  Now I had to figure out how to get them from their chairs, up the stairs, and in the tub--with minimal damage to my own clothing, the carpeting, the walls, you know, pretty much Everything that isn't inside of a giant bubble.  So, I stripped the little devils right by their chairs, and I managed to get them all  the  way  up the stairs and into the bathroom without so much as a drip on the beige-carpeted stairs.

I set them both down by the tub and began removing Chub-Chub's diaper (did you think I was crazy enough to take that off downstairs, too??? Not on your life!).  Miracle Man was standing behind Chub-Chub, but they were both right next to the side of the tub.

Now, one thing you should know about Miracle Man is that he Loves, and I mean LOVES taking a bath!  We're talking squealing-with-delight-and-jumping-up-and-down-while-holding-onto-the-side-of-the-tub infatuation!  And that, my friends, is exactly what my little, wobbly, unsteady 18-month-old Miracle Man was doing when he launched  himself straight into the tub...head first!

Luckily, I had only just  started filling it with water, so there wasn't very much in there.  And, thank  goodness  I follow all the safety rules and he was within arms reach from me!  Because I scooped that little guy up faster-than-you-could-remove-a-hot-potato-from-the-oven--tinfoil on, without  a  glove !

Unfortunately, what had happened when he fell in (all superfast  and ToPsY tUrVy), was that he bonked his head on the bottom of the tub...hard.

After I scooped him up, I laid him down on the floor and he kinda looked all FuNny to me.  That's when I noticed that    he.wasn't.breathing.    And then, he wasn't responding to me, either. At.All.

As the PANIC! OMG!-I-THINK-HE-IS-DEAD!!! ensued, I at  least  had the where-with-all to call 911.

Thank  God  I had my phone   right.there.with.me   (which I never used to usually do because I didn't want to be distracted while the babies were in the tub).  It was just one of those lucky instances where I did something by accident  that turned out to be totally FABULOUS!

The 911 operator was great.  He asked me all about Miracle Man and what was happening, and as we were talking, Miracle Man started to come out of it.  His face was no longer scrunched up.  His pupils were no longer dilated.  And he was breathing!  I am not sure how long it was all taking place, but it seemed to me like it was Forever.  The man keeping me calm on the other side of the phone proceeded to talk me through everything I needed to do to help the paramedics when they arrived.  When I hung up with him, I relayed the instructions to my then six-year-old Little Miss,  "Honey, go downstairs, turn on the outside lights, and open the door.  Find Boomer (our dog) and put him away.  Go  now .  Hurry!"

Little Miss rose to the challenge..and completely exceeded  my expectations.  She hurried along and did everything I had told her to do.  She didn't panic.  She didn't stall or ask questions.  She even figured out that she should lock Boomer away upstairs in the boys' room, without me even giving her that specific direction.  She was nothing short of AMAZING!  My heart is still  swelling with pride, as I sit here and write about her actions.  Later on, when everything was all over with, I made sure I told her how proud of her I was, and that she was my hero .  

Literally the moment after Little Miss locked the dog away, the EMT was walking up my stairs and stepping into the bathroom...it was that fast !  We spoke briefly and he took over, sending me downstairs to wait with another EMT who asked me a bunch of questions, as the sirens and the various vehicles that made them continued to come up the street.  I looked out my front door and saw through the pouring  rain  what seemed like a bazillion-and-one emergency vehicles all up and down the street, parked on the lawn, in the driveway...wherever they could fit.  You would think it would be comforting, but it was actually terrifying . 

I turned back toward the noise upstairs and what I saw, I will never forget.  How tiny  And helpless  my little baby looked in this man's large hands.  He cradled Miracle Man's head and floppy-seeming body down the stairs and out to the awaiting ambulance...while I stood by, paralyzed by fear, Chub-Chub clinging to me, diapered, but otherwise naked.

 The next thing I remember happening was another paramedic asking me for the car seat  from the car and I couldn't even respond coherently to him.  He ended up taking my keys and going out to the car to remove the seat for me (since I was clearly not capable of producing said car seat for him, in my panic-induced stupor).  In the meantime, Chub-Chub (with his still-spaghetti-stained-head) and Little Miss (all-wide-eyed-and-shaking) were glued to me, frightened by the cacophony of sirens, mesmerized  by the lights, intimidated by the sudden rush of strangers in our home.

The EMT who had remained inside the house while all of the others bustled around on our front lawn and in our driveway, asked me if I had gotten a hold of anyone to stay with Chub-Chub and Little Miss.  Gosh !  I hadn't.Even.Thought.Of.That.  I was just so  scared and focused on what was happening with my Miracle Man in the moment.  Immediately, I tried calling Prince Charming, but he wasn't answering (apparently they don't have cell phones on white horses!?  Who knew?).  Then I began calling everyone I could think of that was nearby enough, who might be able to come over.  But I couldn't get a hold of anyone!  I did all anyone in this situation could  do.  I left several voice mail messages all over the place.  I was at a complete  loss and desperate to find out what was happening with Miracle Man out there in the ambulance!

The woman still in my house offered to stay inside with my other two children so that I could go check on Miracle Man, but Chub-Chub would have no part of that!  And I couldn't take him out in the pouring rain without clothes on.  I had to get him dressed...and while I was working on that, my neighbor came over, asking what she could do to help.  What an amazing  woman!  We barely knew each other, and yet, here she was, standing at my door, in the pouring rain, offering assistance.  She sure came at the right time, too!  I handed over Chub-Chub, who willingly went, and I remember so clearly asking her to "Please, just clean the spaghettios off his head for me."  That thought still makes me giggle!  And she and I have both laughed about it together since.

Anyway, so Chub-Chub and Little Miss headed over to the neighbor's house, while I grabbed my purse and ran out the door to see my little guy in the ambulance. I climbed in and we headed toward the hospital.  During the ride, I was finally able to get a hold of Prince Charming and my mother-in-law, and they were both springing to action;  Prince Charming heading to the hospital, and my mother-in-law to retrieve my other two kiddles from the neighbor's.  Phew!  At least that was some  kind of relief!

As we rode along, Miracle Man was still very subdued, and not at all like his normal, cheerful, happy-go-lucky-self.  But, as is often the case (at least in my world), by the time we reached the hospital, he seemed completely fine...and was even smiling and giggling with the EMT's, and (dare I say) flirting  with the nurses!

The ER doctor checked him all over and determined...(since he wasn't there to actually see  what had happened and could only rely on an anxious mother's inexperienced description of the events that had occurred)...that Miracle Man must've bumped his head hard enough to have knocked himself out cold--with his eyes still open.  Hmmmm...weird, I thought.  But, okay...He's the expert!

In any case, we were sent on our merry way, and headed home to our anxious family members (by now, my sister-in-law had also come over to the house to help with the kids and await the news).  Once we arrived home, we were greeted by everyone, including an understandably anxious Little Miss, who recounted her experience of the events with wide eyes and fervor. 

So, about a week passed and everything seemed to be going alright...Miracle Man didn't really seem any worse for the wear, thank goodness!  Until............One day I was out walking around my neighborhood with the boys in the stroller.  After a brisk, but brief stride, both boys decided to take turns wearing their Mr. Cranky Pants hats.  They wanted Out of that stroller...in a bad way!  Can you blame them?!

I took them out, one at a time...letting Chub-Chub walk alongside the stroller, but carrying Miracle Man, who was not yet able to walk.  But then they were both irritable, and I had a hard time getting either  one back in the stroller as they squirmed and fought against me with all their strength.  Sometimes, us parents just have to pick our battles, and so I decided to let Chub-Chub walk, while I carried Miracle Man, and pushed the stroller at the same time.  Yeah...that didn't last long.  Miracle Man soon became too heavy for me and it was too awkward trying to push the stroller, too.  And , I was  almost back home, so, like a fool, I set Miracle Man in the stroller, without strapping him in just yet.  I have no  idea why I did that!  I am such  a paranoid freak about these things usually.  I normally won't even let them sit in the stroller without buckling them in, much  less  walk around like that!  I truly, truly  do not understand, for the life of me what I was thinking!  Well, sure enough, my Miracle Man slipped out and fell onto the pavement!  Hello!!!  This, people, is eggs-act-ly why children should always be buckled into a stroller!  I still feel so  much  guilt for making such an incredibly stupid mistake.

Now, naturally, when he fell onto the pavement, he bumped his head again.  And I picked him up, to.hug.him.and.comfort.him.and.tell.him.that.I.was.sorry...for being so  incredibly careless.  And that's when I noticed that his face had, once again, begun to scrunch up...and his eyes were rolling back into his head...and his body was stiff...and he wasn't breathing...again...and OMG!  He's doing it AGAIN!  And this time it is completely All.My.Fault!

It wasn't until the third such instance of these episodes that I really started to realize what was happening, and  began to be able  to focus on him and pay attention to the details of what was occurring, so that I could better explain to the doctor what had happened.  This time, I was at home with the children and some family members, having a pizza night.  Miracle Man had been cruising along the wall in the hallway when he fell over, bumping his head on the slate floor.  My brother-in-law had been right next to him, so he picked him up, called for me, and handed him over.  And yet again, Miracle Man was having all of the same symptoms!

But this time, this  time , I was more keenly aware of each thing that was happening to him.  His eyes were rolling back into his head, his face was all scrunched up, his body was stiff as a board, his feet and toes were pointed forward, and he  wasn't  breathing .  I brought him into the kitchen and yelled to everyone,  "He ' s  not  okay !  He's not okay!  He's doing it again!"  I laid him on the floor and tried to get him to "come back to me".  His eyes stopped rolling, but his pupils were dilated.  His face seemed yellow at first, then ashen.  He wasn't aware of anything that was going on around him.  We were just  about to call 911 again, when he finally "came to".   I just hugged him and held him...and then...I put a helmet  on that poor little guy!  Because I was so freaked out--that's why!  Afterward, we all sat around discussing what had happened and how we all thought  it looked like a seizure. 

Miracle Man was already scheduled to see the neurologist at the end of the month, but with this third episode happening in as many weeks, it warranted a call to the office and a sooner appointment.  We were so very fortunate to get in the following week.  The outcome of that appointment was an appointment for a sleep-deprived EEG...and a confirmation that Miracle Man was, indeed, having seizures...the first one being the dreaded, "Night of the Spaghettios!"

Now, I know that I mentioned this in a previous post, but I will reiterate it here...the EEG came back "normal".  When he gave me the results, I explained to the neurologist that I had figured  it would come out normal, because he didn't hit his head before or  during the EEG (since I believe that the seizures are being caused by the head bumps).  The neurologist was quick to quip, "True, but I don't think the people over there would look too fondly upon me if I asked them to bonk Miracle Man on the head first."  So true!  LOL  Ahhhh...humor!  It's what get's us through this cRaZy life, isn't it!?!

Fortunately, Miracle Man has not had any more of these types of seizures (called tonic clonic seizures) since the one in the hallway, which was in the early spring!  Yipppeeee!! (Please take a moment to knock on any wood you may be sitting near right now...Thank you!)  He does, however, have staring spells every so often, which could  be  another type of seizure--but the jury is still out on that one.  Either way, Miracle Man continues to be monitored on a regular basis by everyone who spends any amount of time with him, as well as the neurologist.

And that, my friends, is all I have to say about that.  (For the time being, at least!)

Ta-Ta For Now,

MM

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