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Friday, November 22, 2013

The Top Ten Best Things About Having Twin Toddlers

Typically when I am out and about running errands with the kids, tons of people are drawn-in by the sight of my twins.  There pretty much isn't  an outing that goes by without hearing the usual, "You've got your hands full!" or "Oh, you've got double-trouble ," or "I don't know how  you do it."  Sure, there are plenty of other things people say and ask, but if I had a nickel  for every time someone said one of these "twin catch-phrases" to me, I would be able to buy a brand-spanking-new...book!  Hey, what can I say???  It's inflation!  Anyhow, over the past two and a half years, I have also had many different people ask me what it is like to raise twins.  So, for all of those inquiring-minds-that-want-to-know, here it is in a nutshell!




Having twins is a crazy, all-consuming, over-the-top experience.  But it is also absolutely  wonderful Here are my top ten favorite things about having my twins...so far:


1.  They have two totally different personalities that I get to experience.  Miracle Man is sweet  and very laid-back (unless he needs  something...and then, oh  boy Watch.Out.World!)  Chub-Chub is FUN and s.i.l.l.y., and a real rough-and-tumble kinda guy.  But he is also so loving and he needs  me.

2.  I personally love  to be silly and laugh, and with twin toddlers on my hands, it means double the silliness AND double the laughter!

3.  There is twice as much love to give and receive!  I just love when they come over to me just  to give me a hug, a kiss, or to snuggle.  I am very lucky to be able to have twice  as many hugs as most people!



4.  I have been accused of being a "clothes horse" in the past, so...naturally , going out in public with my children is much  more fun when they are wearing a-dor-able outfits...and having twins  means that I get to dress up two little critters!  And, yes, Sometimes I do dress them alike...I think it's cute!  And besides , while they're still young, I can! :)





5.  Most of the people who are in our lives have become more involved in our family.  I love that!  And I totally  credit the twins with bringing our family and friends closer to Prince Charming and I.


6.  I love when they play together.  It isn't very often, but when they are running around, giggling, and being silly together or tackling each other, I think it is  just  so  great !





7.  They have recently started to notice each other's absence and miss one another.  For instance, when Miracle Man is at his school every day, Chub-Chub cannot  WAIT to go pick him up to bring him home!  And the whole  time that we are walking from the car into the school, Chub-Chub repeats Miracle Man's name over and over, and over...and  over ...until........at last!......they see each other and Chub-Chub gives Miracle Man a giant hug! Can you say Adorable?? 

 

8.  It warms my heart to see the boys looking out for each other.  Right now, it is mostly Chub-Chub who comforts or helps Miracle Man, but in time, I am sure  I will get to see the reverse more often!  Still, it is very  sweet  to see Chub-Chub loving-up his twinnie all the time.



9.  Bathtime.  It is far  more entertaining to bathe two little guys at the same time, rather than just one!  Oh, the shrieking !  Oh, the giggles!  Oh, the splashes! 
 


 
10. Sometimes they like to feed each other.  It is downright hilarious !  They take turns putting something in the other one's mouth and s.q.u.e.a.l.i.n.g. with delight !  Luckily for me, right now they are still aiming for each other's mouths...even if it doesn't quite  make it in there!

So there you have it...a glimpse into the life of a twin momma...in all it's splendor!  And yes, you can be sure  there will be a sequel to this post!  

Do any other twin mommas have anything else they would like to add?  Tell me what you like best about having your own twins in the comments section below!

Yours in twindom,
MM

Thursday, November 21, 2013

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





Wednesday, November 20, 2013

My Own Pity Party

I promise I won't do this very often...but today I need to.  I just have some feelings that I feel I need to share.  And, let's be honest...about this whole blogging thing...it really is for me , isn't it?  LOL  I mean, of course there are all the things I hope to accomplish through blogging, like helping other people in similar situations, at the very least, feel like they are not alone.  And maybe, just maybe, becoming an inspiration to someone who is just beginning the process (you know, later on down the road).  Ultimately, though, blogging about my life really is a chance for me  to express myself, right?  I have just one caveat before I go ahead and jump on in with both feet...you should know that I am Very  Grateful  that my symptoms are not nearly as bad as they could be.  I know that there are many more people in the world who are less  fortunate than me.  I can only hope that my disease doesn't progress to the levels that I have seen it could eventually be.  But in the meantime, I am thankful that, despite all of my issues, it is not worse.

So, here's your very last chance to bail on reading this post if you aren't up for listening to a lot of whining and complaining...it's just something really need to do right now...have a little pity party for myself so that I can get the whining out of my system and focus more on what I need to do to stay as healthy as I can for my family.  So, if you keep on reading, don't say I didn't warn  you!

How about I start this off as a top 10 list of my most annoying symptoms?  That's sounds good to me ...

1.  I am soooooo tired. All.The.Time!  Like sleepy tired...you know that feeling when your eyes start to sting because you're super  tired?  That's how I feel.  Always.  Even if I get a good night's sleep, or nap, or rest.  I am tired...and not like mom  tired.  Just through and through tired.

2.  I'm exhausted.  I know that sounds an awful lot like number one, but I am referring to a different kind of tiredness now...the one that exists deep in my muscles.  It sorta feels like I have spent hours at the gym lifting very heavy weights...and a lot of times there is a soreness there, too, as if I really did  lift weights!  Thank goodness the boys can walk a lot now, because the exhaustion in my muscles makes it very difficult to carry them much at all anymore.  But this exhaustion effects absolutely everything  I do throughout my entire  day.  So if anyone I know sees me and thinks I look miserable, it's probably just that I'm tired and exhausted...please don't take it personally! ;)

3.  I ache.  Like bone ache.  My hands, my right pinky finger, my wrists, my arms, my right elbow, my legs, my knees, my hips, my neck, my back, and I am sure some other part of me that I am forgetting.  I feel like I am 80 years old!  Can somebody hand me my walker, please??  Now, I do feel a little better once my body gets up and moving, like after a little exercise or something...but then I am tired and exhausted again.  I am really going to have to learn to find balance in my life to help with this.

4.  My stomach is a mess.  I often feel like I am going to spew chunks (sorry to any of my visual friends, followers).  And if it's not coming out one end, it's the other!  Again, I apologize.  But it's real .  Too, I am frequently gassy, bloated, and/or constipated, just to tie it all up in a neat little package...with a giant purple bow (because that's my favorite)!  But, pretty much, my stomach rarely feels "right" anymore.

5.  My hands and feet are frozen icicles hanging off logs.  And it is sooooooo hard to warm them up if they get cold!  I have to be very proactive with this one!  Because once they're cold, forget  it !  I might as well stick them in an ice bath and tell them that misery loves company!

6.  I am having a hard time swallowing.  This is one of the weird symptoms I was vaguely aware that I was experiencing, but I didn't realize it was actually a symptom of anything , until the doc told me about it.  And now that I am paying more attention to it, it is a bit annoying.

7.  Another one:  I have difficulty taking deep breaths.  It hurts my lungs.  I was aware of this symptom before seeing the scleroderma specialist, but as with the swallowing, I had no  idea  that it was connected.  I just assumed  it was because I was out of shape.  But now, I am worried about it.  I am anxious to go for my pulmonary function test next week to see if I have any scar tissue on my lungs.  *Wish me luck*!

8.  Acid reflux...something I have only had a few times in my life...except when I was preggo with those beautiful boys of mine!  While I was pregnant with the twins, I had the  worst  heartburn of my life!  And when it continued post-delivery, I was sure  it had something to do with the pregnancy hormones still hanging around in my body?!?!  I guess not!  Fortunately, I don't have it very  often...but I have had it in the middle of the night, to the point of vomiting, and that stinks !

9.  Swollen glands and low-grade fevers are pretty much a weekly occurrence.  What a pain in the neck!  Literally!  LOL

10.  My skin is itchy.  With scleroderma, you usually get patches of thicker, itchy skin on different parts of your body.  And so far, I am very fortunate, in that I have very few of these patches.  However, my skin is frequently itchy all over...and that makes me start thinking of chicken pox...and head lice...and scabies...and other creepy, itchy things, and it makes me even more  itchy! 

Okay, that's a pretty big laundry list of my physical complaints.  Just a few more complaints...but these are more of an emotional nature.  I think I'd like to do another list...but let's stick to, let's say, maybe my top five  complaints for this one.  That way I don't bore you to death with my whining.

1.  I am frustrated that I have to now deal with my own health issues.  I have all I can handle, trying to deal with Miracle Man's health/learning concerns and raising my other 2 children, plus taking care of the dog, the cats, the house, my husband, etc.  I don't have the time  to be dealing with my own health issues.  And I don't feel  like running to doctor's appointments for myself, on top of all of the appointments for Miracle Man and my other two lovelies.  I don't wanna do it and you can't make me!  (Ooops, sorry...flashback from childhood!)

2.  I don't want this to be my body now.  I want to run.  Marathons.  Many, many  Marathons.  I wanted to be able to run one in every state by the time I eventually retired from running.  I even wanted to run a few internationally.  And I don't want to feel like I am 80 years old when I have so much life left and so much to experience as a mom.  I don't want to feel like a slug at all.  I want to play hardcore with my kiddles.  Was this an invasion  of the body snatchers?

3.  Even though this diagnosis is all so new to me, I already feel so alone in this disease.  I don't know anybody with scleroderma.  And whenever you tell someone that you have something that they cannot visually see, they often don't "get it".  It makes me feel...so.very.isolated...already .  Nobody seems to understand.  Even though people are caring and compassionate, they still don't really get it, because they haven't experienced it.  I feel like some people think I am just whiny and that I should just "suck it up", but it's not  simply a matter of just "sucking it up".  I wish it were that simple.  I wish I could just "make up my mind" to feel better .  That would make EVERYTHING so much easier!

4. I find myself to be...annoying.  That's strange, isn't it?  But it's true .  Sometimes, I just get so cranky and miserable and I am totally annoyed with myself for it, but I have a hard time changing  my mood.  I have found, though, that if  I can be silly with the kids, or listen to some music, it sometimes helps.  Just not always . And I don't want  to be stuck in those kinds of moods.

5.  Sitting/resting makes me feel lazy.  I don't like it.  I never have.  I have always been on-the-go...since...ummmm...forever .  I think that's why I am enjoying blogging so very much lately.  Because it makes me feel like I am actually accomplishing  something (other than keeping the couch warm), in between taking care of the kids.  And it   bugs.the.heck.out.of.me   to think that other  people  might think that I am just being lazy.  I mean, it really drives me BoNkErS!  And it shouldn't  matter what other people think.  But we live in a work, work, work culture, and I know have a hard time with it, just for myself.  So, I am sure there are many people who already think this or will think this of me.  And that feels terrible to me.

Well, that's it. For now.  As I said above, I promise I won't do this often.  I am glad I was able to get this off my chest.  And I am going to work hard to stay positive and focus on maintaining my health and taking care of my family as best I can.  Thank you to those of you who actually read this post all the way down to here!

That's all folks,
MM

P.S.  Feel free to leave a comment for me below...just be gentle, please.  I'm feeling a little bit fragile emotionally right now.  Thanks!  ;)

Tuesday, November 19, 2013

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 




Monday, November 18, 2013

Momma-Boy

The last time I wrote about my lovely little kiddles, my twin monkeys were not even 6 months old!  It is hard to believe that they are over 2 now.  Some days I feel like, "Phew!  I MADE it!"  And other days, I wonder if I can maintain my sanity through the evening to bed time.  Man, do I love  bed time!  It's the whole-getting-them-up-from-nap-to-avoiding-tantrums-and-injuries-to-dinner-and-bath-and-jammies-and-will-you-just-come-here-so-I-can-brush-your-teeth part I am not so crazy about!  Especially now that they are getting So Big! And by Big, I also mean Strong.  And by Strong, I also mean "Yikes!  I can barely hold you still enough to change your poopy diaper without you squirming away and wiping that poopy all over the carpet (because you are WAY too strong and tall to use the changing table anymore)!"  Sometimes it is an all-out wrestling match reminiscent of the days of the old WWF matches between Triple H and Stone Cold Steve Austin just to get the clean diaper back on.  But, hey!  At least I am getting some upper body strength training in, right?

Anyway, so I have these 2 lovely boys, Chub-Chub and Miracle Man.  And Chub-Chub is doing pretty well overall.  He has recently tumbled head-first into the temper-tantruming, tyrant-like, terrible twos...but overall, he is doing fine.  And he truly is a sweet boy.  He loves to help his momma, often trying to sweep the floor with the broom that is twice as big as him.  And, not realizing how to or what  the actual purpose of sweeping is, the crumbs actually get spread much farther apart than they originally were.  But he loves to do it, and I welcome his help with open arms.  I figure that if I can encourage it now, while he is interested in cleaning and picking up, then later on, it is going to be a sure-fire WIN for me (well, as long as he learns the proper ways of cleaning, that is)!  Chub-Chub is also a loving and caring cuddle-bug.  Aside from playing with his cars or running around the house growling and pretending that he is a monster, zombie, dinosaur, bear, or other animal-of-the-moment-that-growls, his favorite past-time is climbing up in the recliner with me and a blanket to snuggle in for a good story or movie.  He is definitely a "momma-boy", as my daughter used to call him when she didn't know how to say it correctly.  And I simply adore Chub-Chub for his rip-roaring, tackle-every-single-person-or-animal-I-see, knock-everything-in-my-path-or-heck-even-if-it's-not-in-my-path-over, I-am-all-BOY-but-I-love-my-momma personality. That's Chub-Chub in a nutshell!

Here is a pic of when he was a newborn...

And here he is now...my big guy!  

My next post will be about my little Miracle Man.  So, stay tuned!

Have a great day!

MM

Saturday, November 16, 2013

Top Secret!

I have a little secret...do you promise you won't tell ANYONE?  I will only tell you, if you promise...and I mean, Pinky Promise not to say a word!  Okay, you do promise?  Well, great then, here goes:  I am wearing my Christmas  socks already!  Not that I am one of those people who is super-hyped up on Christmas, mind you--because that's really not me.  In fact, I never really liked Christmas much at all for many, many years.  Although, I do have to say that now that I have 3 kids, I am definitely looking forward to Christmas this year!  I can't wait to see the boys get soooooo excited!  And, realistically, I may start decorating soon...just because it is going to take me incredibly long to accomplish it all this year...  

But that isn't the reason why I am wearing my cute little gingerbread, santa, and reindeer socks already.  Nope.  The real reason is somewhat of a nasty confession...it is actually out of necessity!  The whole truth, and nothing but the truth is...I have to wear the Christmas socks because I am so incredibly behind on the laundry in the house!  Gasp! Shock!  The Horror!

Yup...that's right.  I have random piles of clean and dirty laundry everywhere right now!  You see, I have had a really tough two weeks with my achiness and exhaustion, and so, I have focused on putting my energy only toward the necessities, such as feeding the kids, keeping the kitchen in order (with the dishes actually clean), and making sure that there are clean clothes to at least search through each day.

If you don't know me at all, I should at least inform you that I was always a neat freak before having kids, especially prior to the twins.  And even after the twins were born, I took a deep pride in having a clean home.  Keeping up with the house when the boys first came home also felt like a necessity to me, with the endless stream of visitors.  I would even go so far as to say that I was pretty obsessive over it for quite some time during that first year--to the point where my friends expressed their worries about me.  LOL.  But now, with everything else going on, I have had to lower my expectations...so they are much, much, MUCH lower now than they ever were before. Now, don't get me wrong...I do keep the basics cleaned. And I do the best I can, given my time and energy constraints each day.  But, it is not nearly as tidy as I used to like it.  And Mary Poppins would definitely not approve! No white glove tests are allowed in my  house!

Now, in our family of five, if I don't do at least one load of laundry each day, I am pretty much like the Titanic...sunken at the bottom of the sea!  But when you have the aches, pains, and exhaustion I have, carrying loads of laundry up and down stairs is really challenging.  So right now, as I sit in my living room typing, there are about three clean (and unfolded ) loads on the couch, one in the washer, one in the dryer, one in the hamper upstairs, and about four strewn all about my bedroom floor!  Yes, folks, you read that correctly!  My bedroom floor is about as disastrous as a 7-year-old girl's.  It looks like the proverbial bomb went off up there.  So, pretty much, Little Miss and I have matching messes!  (And I wonder why I can't get her to pick up her  room?!)

Finding clothes for the kids, my husband, or myself each day can be quite a challenge.  But the socks...ahhhhhh the socks!  Now that  is something I am not willing to spend the time and energy searching for, for myself to wear each day!  No sireee!  I will not frustrate myself with that endless, exhausting, and somewhat confusing task (where IS that other sock???)  of trying to find two socks that actually match, and match whatever outfit I have managed to put on myself.   Besides, when you're looking for the matchers to Christmas socks in the abyss of the sock drawer, it is, quite frankly, waaaayyyy easier!  Believe me when I say that, right now, I am THRILLED with that incredibly-popular-yet-quite-convenient-for-the-parents-mismatching-sock-trend of my daughter's generation!  Now...if we could only get the boys of the nation on board!  Sigh!

Well, that's my secret...shhhhhhhh.....don't tell!

Happy Sock Hunting,

MM


Thursday, November 14, 2013

A New Purpose

It's been quite a long time since my last post...has it been almost 2 years for real???  And, well, there are so many reasons why I didn't post, but the basic gist of it is:  LIFE. 

Anyway, when I initially started this blog, I wanted to be an inspiration to other mothers, particularly moms of twins, to get out there and get fit, post-babies.  Having a passion for running marathons, I couldn't wait to get my body back to a place where it was willing (or at least forgiving enough) to take on the difficulty of training for 26.2 grueling miles.  And I had wanted to prove it to the world that it could be done!  I am sure there are many twin mommas out there that have been able to accomplish this goal.  Sadly, despite my persistence and overwhelming desire, the reality right now is that it is not going to happen any time soon.

A pain in my groin area was a constant barrier to my goal along the way over this past 2 years. And by now, that oh-so-private-area has been x-rayed, MRIed, and manipulated chiropractically, but it has not gone away.  However, it HAS gotten much better!  Yay!!  And, it's been better enough that I was able to run 5milers several days a week without tooooooooo much pain.  My last run was only a couple of weeks ago, in fact.  But the most deterring factor in my developing any real running routine of significance is this overwhelming, all-consuming exhaustion and achiness that I now have.

Over this past year, I had started to feel worse and worse with each passing week. So began my journey of doctors poking and prodding me and sticking me with plenty of needles, drawing 20 gallons of blood probably.  Well, okay, it might not have been 20 gallons...but it sure was a heck of a lot!  In between blood tests and waiting for results, I tried increasing my running/exercise to combat this awful dark cloud hanging over my body. As long as I do it in moderation, about 3 times per week, I am alright.  But any more than that and I am about as useful to my family as a wet, discarded towel on the bathroom floor.  Know what I'm saying?

Long story...made, um...longer (sorry)...in the past month, I have finally been diagnosed with fibromyalgia, Raynaud's, and as of last week, I have also been diagnosed with scleroderma, which is an auto-immune disease that I am only JUST learning about.  

I have decided that not only will my running serve a new purpose in my life, so, too, will this blog.  Running will be something that I will try to continue to do...in moderation (and by the way, I HATE that phrase when it comes to running) to keep my body in as best of shape as I can; and this blog will chronicle the ups and downs of my experiences with said running and fibromyalgia, scleroderma, and Raynaud's (not to mention my brood of 3 screaming monkeys that follow me around for the sole purposes of clinging to me and hanging off my limbs). And, yes, I really do still love my children.

Happy trails,
MM

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