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
Divider
Tuesday, May 6, 2014
Friday, April 25, 2014
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
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
Wednesday, April 23, 2014
Keep on Keepin' On
It's been quite some time since I last wrote a post. Life has been hectic and overwhelming. And, quite frankly, there have been some ups, but many more downs lately. Since I do not want to be using this blog to constantly whine about all of that, I have had a hard time finding something really great to write about. But today, I want to focus on what is real. So here is really what is on my mind. For real.
My own health has taken a turn for the worse, which can be very depressing at times. I have always been a very energetic, generally positive, Type A-er. But these past few months have challenged both my physical and my inner strength. Whereas during the course of last summer I was trying to walk, run, or ride my bike at least a few times per week, my body refuses to let me do so much as walk around the block right now. The aches, pains, and fatigue are getting worse and I have difficulty with many of the basic daily tasks that I used to take for granted, like daily showers. As a result of my illness, I am currently on an extended sick leave from my career. So...yes, I do in fact feel like a caged animal!
Because each day is often a struggle, I usually have to pick and choose what I am going to apply my energy and strength to. Some days, I focus on simple tasks like just feeding, bathing, dressing, and corralling the little animals, I mean children. Other days I am able to do some housework or take the little monkeys outside to play. Once in a while, I may even have a good day and throw in a trip to a museum or the park. But those occasions are rare. Plus, they typically wipe me out too much for the rest of the day (and usually into the next, if not longer).
To make matters extra-challenging, cuz, why the heck not?, for as long as I can remember, Prince Charming (my handsome hubby) has been working around the clock. He has a regular full-time job as an instructor at the local community college, as well as his own business. He loves teaching the students at the college, sharing his knowledge with them, and he is very good at it. But his passion is in his business. He works very hard to provide for our family. And he works very hard at making his business into a successful one. He puts in extremely long hours--basically working around the clock. We hardly ever see him, except for one day each weekend. Most days, he leaves when the school bus pulls away, and returns after everyone, including me, is asleep. The children miss him terribly throughout the week, which breaks my heart. Many days, part of our morning routine includes Chub-Chub standing at the door, tears staining his rosy cheeks as he cries out, "Daddy no go work."
As for me, I miss having a husband, a companion, someone to share my life and the children with. I miss evenings together watching our favorite shows. Or simple adult conversation. It can get quite lonely, especially late at night once the kiddles are sound asleep, blankies tucked around their tiny bodies. I also wish that Prince Charming were here more to share in the immense responsibility of raising the children, guiding them to be socially adept, well-mannered, principled, productive citizens. It would be great to have someone to help encourage and shape their young minds and souls so that it wasn't just on me. And then, there is also the incredible amount of work and stress of our sweet Miracle Man, whose needs seem to be growing each and every day (my next post will be an update on him). I would love to be able to share that responsibility with Prince Charming, too (or at least have a break from it every now and then). But right now, I am on my own. And that's the way it has to be. Prince Charming is doing what he needs to do for our family. And my job is to keep on keepin' on!
Many people I talk with tell me that it's as if I am a single mother. My reply is always the same. Yes, it does feel like that most of the time. However--and this is a pretty big HOWEVER--at least I am not paying the bills myself, too. I do not have to hold down two jobs and take care of the kids at the same time. I am very fortunate in that way. And being home with the children right now while I have my own medical issues is certainly not easy, by any stretch of the imagination. But at least my children are not depending on me to bring home the bacon, as well as wipe their bottoms!
Despite the dreariness of all else that has happened, I will say that there has been one incredible "positive" that has occurred since my last post. I have been very fortunate to have a mother's helper come into our home to help me out several days per week since the end of January. I will call her Sunshine because she has been as fabulous as the first sunny day after our long and dreadfully cold winter! She helps take care of the kiddles: getting them dressed, bathing them, giving drinks or snacks, playing with them, reading to them, helping Little Miss with her homework, and helping me cook or serve meals. Sunshine also helps me around the house doing whatever chores I need her to do on the days that she is here. I have really come to rely on her immensely! So much so, that the days that I don't have her...well, let's just say that it's that much harder to handle everything all by myself now that I know what it is like to have an extra pair of hands around!
Keep on Keepin' on,
Marathon Momma
My own health has taken a turn for the worse, which can be very depressing at times. I have always been a very energetic, generally positive, Type A-er. But these past few months have challenged both my physical and my inner strength. Whereas during the course of last summer I was trying to walk, run, or ride my bike at least a few times per week, my body refuses to let me do so much as walk around the block right now. The aches, pains, and fatigue are getting worse and I have difficulty with many of the basic daily tasks that I used to take for granted, like daily showers. As a result of my illness, I am currently on an extended sick leave from my career. So...yes, I do in fact feel like a caged animal!
Because each day is often a struggle, I usually have to pick and choose what I am going to apply my energy and strength to. Some days, I focus on simple tasks like just feeding, bathing, dressing, and corralling the little animals, I mean children. Other days I am able to do some housework or take the little monkeys outside to play. Once in a while, I may even have a good day and throw in a trip to a museum or the park. But those occasions are rare. Plus, they typically wipe me out too much for the rest of the day (and usually into the next, if not longer).
To make matters extra-challenging, cuz, why the heck not?, for as long as I can remember, Prince Charming (my handsome hubby) has been working around the clock. He has a regular full-time job as an instructor at the local community college, as well as his own business. He loves teaching the students at the college, sharing his knowledge with them, and he is very good at it. But his passion is in his business. He works very hard to provide for our family. And he works very hard at making his business into a successful one. He puts in extremely long hours--basically working around the clock. We hardly ever see him, except for one day each weekend. Most days, he leaves when the school bus pulls away, and returns after everyone, including me, is asleep. The children miss him terribly throughout the week, which breaks my heart. Many days, part of our morning routine includes Chub-Chub standing at the door, tears staining his rosy cheeks as he cries out, "Daddy no go work."
As for me, I miss having a husband, a companion, someone to share my life and the children with. I miss evenings together watching our favorite shows. Or simple adult conversation. It can get quite lonely, especially late at night once the kiddles are sound asleep, blankies tucked around their tiny bodies. I also wish that Prince Charming were here more to share in the immense responsibility of raising the children, guiding them to be socially adept, well-mannered, principled, productive citizens. It would be great to have someone to help encourage and shape their young minds and souls so that it wasn't just on me. And then, there is also the incredible amount of work and stress of our sweet Miracle Man, whose needs seem to be growing each and every day (my next post will be an update on him). I would love to be able to share that responsibility with Prince Charming, too (or at least have a break from it every now and then). But right now, I am on my own. And that's the way it has to be. Prince Charming is doing what he needs to do for our family. And my job is to keep on keepin' on!
Many people I talk with tell me that it's as if I am a single mother. My reply is always the same. Yes, it does feel like that most of the time. However--and this is a pretty big HOWEVER--at least I am not paying the bills myself, too. I do not have to hold down two jobs and take care of the kids at the same time. I am very fortunate in that way. And being home with the children right now while I have my own medical issues is certainly not easy, by any stretch of the imagination. But at least my children are not depending on me to bring home the bacon, as well as wipe their bottoms!
Despite the dreariness of all else that has happened, I will say that there has been one incredible "positive" that has occurred since my last post. I have been very fortunate to have a mother's helper come into our home to help me out several days per week since the end of January. I will call her Sunshine because she has been as fabulous as the first sunny day after our long and dreadfully cold winter! She helps take care of the kiddles: getting them dressed, bathing them, giving drinks or snacks, playing with them, reading to them, helping Little Miss with her homework, and helping me cook or serve meals. Sunshine also helps me around the house doing whatever chores I need her to do on the days that she is here. I have really come to rely on her immensely! So much so, that the days that I don't have her...well, let's just say that it's that much harder to handle everything all by myself now that I know what it is like to have an extra pair of hands around!
Keep on Keepin' on,
Marathon Momma
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
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
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 I 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 I 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! ;)
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 I 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 I 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
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
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