I still can't believe that I'm able to type this, but Monkeyman's PH has resolved!!!!!! It's just absolutely amazing.
Cardiologist did a repeat echo, and said the enlarged pulmonary arteries hs started to shrink back to normal, the right heart ventricle is also shrinking, the regurgitation is less (not gone, but less!) and the pulmonary arterial pressures has gone down from in the 30's to 16 (which is normal). Whoohoo!!!!
So overall, his pulmonary hypertension is cured, which is just astounding because it almost never happens! It's an incurable disease, but, if you're lucky and it was secondary to sleep apnea, it might resolve if you treat the sleep apnea. Which we did, in Monkeyman's case, when the ENT took his enlarged adenoids out. Isn't it strange that a kid that never snored, had such bad sleep apnea that he must've desat badly at night? Enough to cause his lungs to suffer so much from lack of oxygen, that it caused small changes in the arteries to the point of causing obstruction to the blood flow. I asked the doctor why if there's obstruction in the nose, and the child mouth breathes at night, would his oxygen levels still fall, and she said it's because he breaths less effectively through the mouth. That it's very shallow breathing. It makes sense.
I'm still in shock. Extremely relieved, but still in shock. I prepared myself for the worst today, and got the absolute best case scenario. I just assumed, what's the chances of Monkeyman also having the rarest case of a rare disease, just like Boeboe did? Gosh, I really have some special kids. Makes me humble.
Thank you for all the prayers and support and interest in my little boy's lot. I'm so happy to be able to report this good news. I'm still a tad worried about his tiredness and heart palpitations. His cardiologist said to just let him rest when he has heart palpitations, and to go back to the pead with his tiredness for some more bloodtests. And maybe first take a good b-complex multivit for a few months to see if it'll help. She also said she'll have a look at his blood tests to see if there's any reason why his iron levels dropped. Though, she doesn't think his iron levels is the cause of his strange tiredness. Maybe it's just how he is, who knows?! I don't anymore. Anyway, for now, I just want to celebrate the good news. Our little boy doesn't have PH anymore!!!!
Monday, August 5, 2013
Day 5: Ten songs I love
My heart isn't in the challenge today, as you can imagine. We're seeing the cardiologist for Monkeyman's follow up this afternoon. They're either going to tell us his PH is resolved because it was due to sleep apnea which has been treated 2 months ago by cutting the adenoids out. Or they're going to tell us his pulmonary hypertension pressures is still too high. I would've been more relaxed if he didn't have symptoms anymore. And if the alternative wasn't such a devastating disease. Life altering at the very least, fatal at the worst. I'll be sure to come and update as soon as I can.
Anyway, here goes. Ten favourite songs at the moment (mostly because some of them are on the CD that's currently in my car's CD player, I'm just too stressed out to sit and think about other songs I love).
1. Caravans
2. Hot and Cold (Nino de Angelo)
3. Guardian Angel (also Nino de Angelo)
4. Jy's te dierbaar, om seer te kry
5. Living next door to Alice
6. Conquest of paradise
7. Onse Vader
8. Nogtans sal ek jubel
9. Balade for Adeline
10. Tussen treine
OK, there's hundreds more, but those were the first 10 that came to mind. Not because they're my favourites, but because I like them and heard them in the past week on tv, CD or radio. And they're some of my favourites.
Anyway, here goes. Ten favourite songs at the moment (mostly because some of them are on the CD that's currently in my car's CD player, I'm just too stressed out to sit and think about other songs I love).
1. Caravans
2. Hot and Cold (Nino de Angelo)
3. Guardian Angel (also Nino de Angelo)
4. Jy's te dierbaar, om seer te kry
5. Living next door to Alice
6. Conquest of paradise
7. Onse Vader
8. Nogtans sal ek jubel
9. Balade for Adeline
10. Tussen treine
OK, there's hundreds more, but those were the first 10 that came to mind. Not because they're my favourites, but because I like them and heard them in the past week on tv, CD or radio. And they're some of my favourites.
Sunday, August 4, 2013
Day 4: What are you afraid of
Hmmm, today's challenge is an easy one. I'll list my fears, and will try to limit it to 10. Yeah yeah, I'm a scaredy cat, I know!
I'm afraid of:
1. Loosing a loved one. (Aren't we all?)
2. Leaving my children motherless.
3. One of my children being kidnapped.
4. Spiders. Any and all, but especially poisonous ones. I don't kill all daddy long legs for example, because I don't fear them that much. But if a button spider or sac spider comes near me, I kill it.
5. Snakes.
6. Heights. Driving through a mountain pass is the absolute worst.
7. Speed. Especially speeding cars.
8. Lightning. (It might sound strange to someone not living in SA, or here on the highlands. But the lightning storms here is exceptionally bad. Numerous people are killed every summer where I live.
9. World War III. Not a big fear, just a small worry when reading the newspapers sometimes.
10. Civil war in my country. This isn't a conscious fear, it's more of a mild concern.
11. My daughters (and sons) getting raped in this "rape capital of the world" we live in.
12. My children or husband being attacked, killed, robbed, hurt, murdered, hi-jacked, kidnapped, etc. in this crime ridden country of ours.
13. One of my children going "off the rails" onto a path of drugs or something similar that would destroy their future.
14. My husband not growing old with me (or me with him!).
And lastly, but not the least, one fear today specifically:
15. That Monkeyman's echo won't show improvement on his pulmonary pressures tomorrow, or that the dr is wrong about the cause of his PH.
OK, that was more than 10. I said I'm a scaredy cat, didn't I. ;-) I have to add, it's not as if I sit all day and stress about the above mentioned fears. I'm not a negative person, usually. Quite the opposite, I'm "the glass is half-full" type of person. Unfortunately, I'm also a realist and very logical, and quite statistical. And all of above is possibilities, however remote, chances are there so it scares me. But I'm also a Christian, so I believe whatever is put on our road, we will handle with the help of God.
I'm afraid of:
1. Loosing a loved one. (Aren't we all?)
2. Leaving my children motherless.
3. One of my children being kidnapped.
4. Spiders. Any and all, but especially poisonous ones. I don't kill all daddy long legs for example, because I don't fear them that much. But if a button spider or sac spider comes near me, I kill it.
5. Snakes.
6. Heights. Driving through a mountain pass is the absolute worst.
7. Speed. Especially speeding cars.
8. Lightning. (It might sound strange to someone not living in SA, or here on the highlands. But the lightning storms here is exceptionally bad. Numerous people are killed every summer where I live.
9. World War III. Not a big fear, just a small worry when reading the newspapers sometimes.
10. Civil war in my country. This isn't a conscious fear, it's more of a mild concern.
11. My daughters (and sons) getting raped in this "rape capital of the world" we live in.
12. My children or husband being attacked, killed, robbed, hurt, murdered, hi-jacked, kidnapped, etc. in this crime ridden country of ours.
13. One of my children going "off the rails" onto a path of drugs or something similar that would destroy their future.
14. My husband not growing old with me (or me with him!).
And lastly, but not the least, one fear today specifically:
15. That Monkeyman's echo won't show improvement on his pulmonary pressures tomorrow, or that the dr is wrong about the cause of his PH.
OK, that was more than 10. I said I'm a scaredy cat, didn't I. ;-) I have to add, it's not as if I sit all day and stress about the above mentioned fears. I'm not a negative person, usually. Quite the opposite, I'm "the glass is half-full" type of person. Unfortunately, I'm also a realist and very logical, and quite statistical. And all of above is possibilities, however remote, chances are there so it scares me. But I'm also a Christian, so I believe whatever is put on our road, we will handle with the help of God.
Saturday, August 3, 2013
Day 3: My favourite Quote
My favourite quote has a bit of a story to it. Explaining why I love it so much. I came from a very sheltered childhood. My parents moved to this small, little town in the middle of nowhere when I was age 5. It was far, far away from any of their families. So while I grew up, my parents would never leave us anywhere so that they could have a fun night out, go away for a weekend without us children or leave us somewhere for a holiday without children. I slept over at friends' houses from very early on, so it's not because they were super paranoid. I guess it was a combination of having no one to leave their children with, and not feeling the need to do it.
So imagine growing up in a VERY small town, rarely going anywhere and except for sleepovers with friends, never being away from your parents, ever. Then, age 18 after school, you're send away to study at univarcity in the big bad city with the prospect of going home one weekend every term (a term is about 10 weeks long), and 4 holidays a year. It was very, very hard on me, a total mommy's girl. I missed my parents to the point of being in physical pain. I missed my home. I missed my things. I missed my school friends. I missed the quiet, country life. I hated the city. I hated the people in the city. I hated the fast pace, the noise, the traffic, the sheer number of people. I hated the difference in cultures which made me feel different and awkward. I missed my language (city was English mostly, while everyone, black and white, spoke Afrikaans where I came from). I missed the values and integrity I was raised with in the country. The city girls were just... different.
I was very lonely. I did make an exceptionally good friend. She too came from the country, had very high standards and morals and we were very similar. In time, I created a small niche for myself, filled it with like-minded people and I grew up. I met my husband and enjoyed studying so much in the end that I also did my Honors degree full time. But in the beginning, it was very, very difficult.
In that time of missing my parents and school friends, I read this short story about a girl who was so very very lonely. Her loneliness was so profound, that it attracted a being from outer space. It flew to earth, contacted her and gave her a message before it passed away. Of course, everyone demanded to know what wisdom it parted to her. What secret intelligence did it possess. But, it was only a message. A message for her, that really touched my soul, because at that moment, I could relate and understand. The message meant the world to me in a time I needed to know that I wasn't alone. That even though it felt like I was the only person on planet earth, I wasn't.
“There is in certain living souls a quality of loneliness unspeakable, so great it must be shared as company is shared by lesser beings. Such a loneliness is mine; so know by this that in immensity there is one lonelier than you.” - Theodore Sturgeon
So imagine growing up in a VERY small town, rarely going anywhere and except for sleepovers with friends, never being away from your parents, ever. Then, age 18 after school, you're send away to study at univarcity in the big bad city with the prospect of going home one weekend every term (a term is about 10 weeks long), and 4 holidays a year. It was very, very hard on me, a total mommy's girl. I missed my parents to the point of being in physical pain. I missed my home. I missed my things. I missed my school friends. I missed the quiet, country life. I hated the city. I hated the people in the city. I hated the fast pace, the noise, the traffic, the sheer number of people. I hated the difference in cultures which made me feel different and awkward. I missed my language (city was English mostly, while everyone, black and white, spoke Afrikaans where I came from). I missed the values and integrity I was raised with in the country. The city girls were just... different.
I was very lonely. I did make an exceptionally good friend. She too came from the country, had very high standards and morals and we were very similar. In time, I created a small niche for myself, filled it with like-minded people and I grew up. I met my husband and enjoyed studying so much in the end that I also did my Honors degree full time. But in the beginning, it was very, very difficult.
In that time of missing my parents and school friends, I read this short story about a girl who was so very very lonely. Her loneliness was so profound, that it attracted a being from outer space. It flew to earth, contacted her and gave her a message before it passed away. Of course, everyone demanded to know what wisdom it parted to her. What secret intelligence did it possess. But, it was only a message. A message for her, that really touched my soul, because at that moment, I could relate and understand. The message meant the world to me in a time I needed to know that I wasn't alone. That even though it felt like I was the only person on planet earth, I wasn't.
“There is in certain living souls a quality of loneliness unspeakable, so great it must be shared as company is shared by lesser beings. Such a loneliness is mine; so know by this that in immensity there is one lonelier than you.” - Theodore Sturgeon
Friday, August 2, 2013
Day 2: 20 Facts about me
I'm (very) late with this post and it's only the 2nd day of the challenge! I've had a very hectic day.
And geez, this is hard. It would've been easier giving 20 facts about each of the 4 kids, than about me. Hmmm, let's see...
1. I'm a Christian.
2. My favourite books are: all books by Anne McCaffrey, Earth Children series and Harry Potter series. I read these on a yearly basis.
3. I love computer games. My all time favourites are Tex Murphy (a new one's coming out end 2013 - whoohoo!!!!!!), Sims 2 (sims 3 just never felt as good), Rise of Nations, Age of Empires 2, Warcraft 2 and Might and Magic.
4. I'm the youngest of 4 siblings.
5. I've always, since I was a tiny little girl, wanted 5 children - 3 girls and 2 boys.
6. I had an exceptionally good relationship with my mother.
7. I've written (not published) a manuscript.
8. I suck(ed) at sport. Always have. Always will.
9. I'm not competitive at all, and find it mildly amusing to see how competitive other people are/get.
10. I seriously considered studying astronomy after school, but the opportunities in those years were very limited in my country. I also contemplated a medical degree, but some other factors prevented this from happening.
11. I'd rather eat a pack of crisps, than a slice of cake. Though I do love tarts.
12. I can play (a little) piano and guitar, though I'm not really musical and can't sing a note in tune!
13. I've never qualified to donate blood (being underweight disqualifies you).
14. I don't drink alcohol. Nothing against it. Just don't feel the need.
15. I've never smoked/took any illegal substance, and won't ever. Way too much of a control freak.
16. I faint fairly regularly.
17. I'm allergic to most flowers.
18. I've had reconstructive facial surgery.
19. I've been married for 15 years, and hope for another 40!
20. I had a very very happy childhood. I'm hoping to give my children the same.
And geez, this is hard. It would've been easier giving 20 facts about each of the 4 kids, than about me. Hmmm, let's see...
1. I'm a Christian.
2. My favourite books are: all books by Anne McCaffrey, Earth Children series and Harry Potter series. I read these on a yearly basis.
3. I love computer games. My all time favourites are Tex Murphy (a new one's coming out end 2013 - whoohoo!!!!!!), Sims 2 (sims 3 just never felt as good), Rise of Nations, Age of Empires 2, Warcraft 2 and Might and Magic.
4. I'm the youngest of 4 siblings.
5. I've always, since I was a tiny little girl, wanted 5 children - 3 girls and 2 boys.
6. I had an exceptionally good relationship with my mother.
7. I've written (not published) a manuscript.
8. I suck(ed) at sport. Always have. Always will.
9. I'm not competitive at all, and find it mildly amusing to see how competitive other people are/get.
10. I seriously considered studying astronomy after school, but the opportunities in those years were very limited in my country. I also contemplated a medical degree, but some other factors prevented this from happening.
11. I'd rather eat a pack of crisps, than a slice of cake. Though I do love tarts.
12. I can play (a little) piano and guitar, though I'm not really musical and can't sing a note in tune!
13. I've never qualified to donate blood (being underweight disqualifies you).
14. I don't drink alcohol. Nothing against it. Just don't feel the need.
15. I've never smoked/took any illegal substance, and won't ever. Way too much of a control freak.
16. I faint fairly regularly.
17. I'm allergic to most flowers.
18. I've had reconstructive facial surgery.
19. I've been married for 15 years, and hope for another 40!
20. I had a very very happy childhood. I'm hoping to give my children the same.
Thursday, August 1, 2013
Blog challenge Day 1: Introduction
Along with some other bloggers, I'm going to attempt a 30 day blogging challenge. We've been given 30 topics, one for each day, starting today, the 1st of August. Today is just an introduction.
So who exactly am I? Wel, I'm an almost 40, happily married, stay-at-home mom to 4 beautiful kids, living in sunny South Africa. I grew up in the hottest part of our country, the Kalahari. It's a semi-desert region, very dry and very hot. I moved to the city to study, and worked for 4 years after completing my degrees. I got married to my univarcity love, and when I almost lost our unborn baby during my first pregnancy, I decided to become a stay at home mom after his birth. That was 12 years ago! During that 12 years we've added 3 more little ones to our family. They're 12, 9, 5 and 1. When my eldest was 5, he was diagnosed with epilepsy. My 2nd eldest was diagnosed at age 7 with an occult tethered cord (her road to diagnosis started at age 5), and now that my youngest son turned 5, we heard he has a very very rare heart-lung disease. So we're kinda still in shock, waiting to see what his prognosis is. We're also supersticious enough to wonder what our youngest baby will be diagnosed with when she turns 5.
So a bit more about me? Well, I'm a logical thinker. Academically inclined, not creative AT ALL. I love keeping my brain occupied, while my body is stationary (LOL). I hate hate hate excersize, I hate using my hands, and I have loads of "issues" as my dear husband calls it. ;-) I'm a tad OCD, I have sensory integration problems so don't you dare touch my hands! I have some health issues which I refuse to research or do something about, while I will spend every last second I have to research whatever ails my children (I told you I have issues!!). I absolutely love the internet, google and chatting on multiple forums. I hate driving, I hate city-living and I hate rain and having wet socks. I'm impatient but kind, I'm hot-headed but will share my last rolo without a second thought. I'm honest to a fault, and stubborn as can be. I'm opinionated, can stand up for myself, but hate confrontation face to face. I'm extremely loyal, and very very lazy. I always say, I'm a full time mom rather than a housewife, because I hate housework and I'm awful at it. My house is always in some state of dissarray. I absolutely LOVE being a mom, and if I had the means, and a womb that could, I would've had at least one or 2 more children. I adore the baby stage, and so far, the pre-teen phase. I also love being married to my husband. Without him, I'd be lost.
Gosh, I hope that's enough about me? My life is about my kids, I don't care about me. I don't wear make-up, I don't dye or hi-lite my hair. I don't do my nails or go for massages. I don't wear the newest fashions. And I don't care about any of that. My husband, my children and my house, with family and friends thrown in, that's all I care about.
So yeah, that's me. Tomorrow, the challenge is: "20 Facts about you". So I'll have to have a long, hard think about that tonight. ;-)
So who exactly am I? Wel, I'm an almost 40, happily married, stay-at-home mom to 4 beautiful kids, living in sunny South Africa. I grew up in the hottest part of our country, the Kalahari. It's a semi-desert region, very dry and very hot. I moved to the city to study, and worked for 4 years after completing my degrees. I got married to my univarcity love, and when I almost lost our unborn baby during my first pregnancy, I decided to become a stay at home mom after his birth. That was 12 years ago! During that 12 years we've added 3 more little ones to our family. They're 12, 9, 5 and 1. When my eldest was 5, he was diagnosed with epilepsy. My 2nd eldest was diagnosed at age 7 with an occult tethered cord (her road to diagnosis started at age 5), and now that my youngest son turned 5, we heard he has a very very rare heart-lung disease. So we're kinda still in shock, waiting to see what his prognosis is. We're also supersticious enough to wonder what our youngest baby will be diagnosed with when she turns 5.
So a bit more about me? Well, I'm a logical thinker. Academically inclined, not creative AT ALL. I love keeping my brain occupied, while my body is stationary (LOL). I hate hate hate excersize, I hate using my hands, and I have loads of "issues" as my dear husband calls it. ;-) I'm a tad OCD, I have sensory integration problems so don't you dare touch my hands! I have some health issues which I refuse to research or do something about, while I will spend every last second I have to research whatever ails my children (I told you I have issues!!). I absolutely love the internet, google and chatting on multiple forums. I hate driving, I hate city-living and I hate rain and having wet socks. I'm impatient but kind, I'm hot-headed but will share my last rolo without a second thought. I'm honest to a fault, and stubborn as can be. I'm opinionated, can stand up for myself, but hate confrontation face to face. I'm extremely loyal, and very very lazy. I always say, I'm a full time mom rather than a housewife, because I hate housework and I'm awful at it. My house is always in some state of dissarray. I absolutely LOVE being a mom, and if I had the means, and a womb that could, I would've had at least one or 2 more children. I adore the baby stage, and so far, the pre-teen phase. I also love being married to my husband. Without him, I'd be lost.
Gosh, I hope that's enough about me? My life is about my kids, I don't care about me. I don't wear make-up, I don't dye or hi-lite my hair. I don't do my nails or go for massages. I don't wear the newest fashions. And I don't care about any of that. My husband, my children and my house, with family and friends thrown in, that's all I care about.
So yeah, that's me. Tomorrow, the challenge is: "20 Facts about you". So I'll have to have a long, hard think about that tonight. ;-)
Sunday, June 23, 2013
Not what we hoped for (yet)
It's almost 2 weeks since Monkeyman's adenoidectomy. The past week was vastly different from the first week. Since last Sunday, Father's Day, he was just about back to his old self. Huge improvement on that first week where he just lied all day long. He started playing, running around with his siblings, laughing, talking animatedly again, etc. The old Monkeyman we knew.
Unfortunately, he's nothing better than what he was before the adenoidectomy. He's okay, he's fine, but he's no better. We're still waiting for that miraculous, big improvement the doctors told us about. :-( I'm such a worrier, I can't help but wonder why we haven't seen it yet, when they were so adamant that it'll improve quickly and drastically.
About a week before the operation, I went to the shops. The mall I frequent, is rather small (as far as malls go). It's build in a crescent and a rough guestimate of its length from one side to the other, would be about 200m, maybe 250. So really not a big mall. I parked on the one side because that's where I wanted to "end" my shopping for the day (getting bread and milk). But the most important thing on my to do list was the post office on the far opposite side of the mall.
On the way to the post office, Monkeyman asked to sit down on one of the benches. Not long, just a few minutes. At the post office, he complained that he was really tired and HAD to sit down. I showed him a chair, but it was a bit far from me, so he refused. I sort of jokingly said well, then there's just the floor buddy. Lo and behold, he sat down on the floor immediately. It broke my heart. :-( As I moved up in the queue, he just moved with me, while staying in the floor. Once I was done there, he asked to sit down on the benches another 2 times on the way back to the opposite end of the mall. The last shop he did really well and we finished shopping. Probably all in all in about an hour or 2.
A few days ago, about 10 days after the operation, I had to go back to the same mall. But just at the one side of it, so no long walk or anything. I even parked close to the lift. The first shop we went to, the pharmacy, had chairs at the counter. He sat the whole time while I ordered and waited for our chronic medication for the month. I got a handful of clothes in the 2nd shop, fitted them on and paid. He had to stand/walk the whole time, nowhere to sit. The 3rd and last shop, another clothing shop, had a bench inside the fitting rooms. So he came in with me while I tried on various clothing items. And what does he do? He lied down on the bench. :-(
Then, when we went home, he hanged onto the railing in the lift, lying his head on the railing, saying he's tired. All in all, we were there for less than 90 minutes. Rest of the day, he just sat/lied down again. Really not a good day.
So it's up and down. The ups are as good as it was before the operation, the downs are as bad as it was before the operation. No improvement. Nothing.
The one thing I do think is better, is his face colour (more pinkish, not as pale?!) and the circles under his eyes aren't as dark and obvious as it was that first week after the operation. That must count for something?
We did have some (very) good news as well. His allergy tests came back all negative!!!! YAY!!! I'm so very relieved, because I know how hard it is to have a child that's allergic to something, especially food items, or medication. So either he's allergic to some very obscure thing in his diet/environment, or the ENT was very much wrong, believing that the adenoids were swollen because of an allergy. I'm not sure if this means Monkeyman was born with the enlarged adenoids, or what? I guess so. We'll find out when we see the ENT again for his checkup beginning of August.
His iron bloodtest did came back slightly low, so we're supplementing. I'm not very hopeful that it'll make much of a difference, since it never did before. And even when his iron was tested as normal a few years back, he still had this weird tiredness.
Well, there's this week's update. Not really what I'd like to have posted. But maybe, who knows, the next week will show marked improvement. Maybe his body just needs more time.
Unfortunately, he's nothing better than what he was before the adenoidectomy. He's okay, he's fine, but he's no better. We're still waiting for that miraculous, big improvement the doctors told us about. :-( I'm such a worrier, I can't help but wonder why we haven't seen it yet, when they were so adamant that it'll improve quickly and drastically.
About a week before the operation, I went to the shops. The mall I frequent, is rather small (as far as malls go). It's build in a crescent and a rough guestimate of its length from one side to the other, would be about 200m, maybe 250. So really not a big mall. I parked on the one side because that's where I wanted to "end" my shopping for the day (getting bread and milk). But the most important thing on my to do list was the post office on the far opposite side of the mall.
On the way to the post office, Monkeyman asked to sit down on one of the benches. Not long, just a few minutes. At the post office, he complained that he was really tired and HAD to sit down. I showed him a chair, but it was a bit far from me, so he refused. I sort of jokingly said well, then there's just the floor buddy. Lo and behold, he sat down on the floor immediately. It broke my heart. :-( As I moved up in the queue, he just moved with me, while staying in the floor. Once I was done there, he asked to sit down on the benches another 2 times on the way back to the opposite end of the mall. The last shop he did really well and we finished shopping. Probably all in all in about an hour or 2.
A few days ago, about 10 days after the operation, I had to go back to the same mall. But just at the one side of it, so no long walk or anything. I even parked close to the lift. The first shop we went to, the pharmacy, had chairs at the counter. He sat the whole time while I ordered and waited for our chronic medication for the month. I got a handful of clothes in the 2nd shop, fitted them on and paid. He had to stand/walk the whole time, nowhere to sit. The 3rd and last shop, another clothing shop, had a bench inside the fitting rooms. So he came in with me while I tried on various clothing items. And what does he do? He lied down on the bench. :-(
Then, when we went home, he hanged onto the railing in the lift, lying his head on the railing, saying he's tired. All in all, we were there for less than 90 minutes. Rest of the day, he just sat/lied down again. Really not a good day.
So it's up and down. The ups are as good as it was before the operation, the downs are as bad as it was before the operation. No improvement. Nothing.
The one thing I do think is better, is his face colour (more pinkish, not as pale?!) and the circles under his eyes aren't as dark and obvious as it was that first week after the operation. That must count for something?
We did have some (very) good news as well. His allergy tests came back all negative!!!! YAY!!! I'm so very relieved, because I know how hard it is to have a child that's allergic to something, especially food items, or medication. So either he's allergic to some very obscure thing in his diet/environment, or the ENT was very much wrong, believing that the adenoids were swollen because of an allergy. I'm not sure if this means Monkeyman was born with the enlarged adenoids, or what? I guess so. We'll find out when we see the ENT again for his checkup beginning of August.
His iron bloodtest did came back slightly low, so we're supplementing. I'm not very hopeful that it'll make much of a difference, since it never did before. And even when his iron was tested as normal a few years back, he still had this weird tiredness.
Well, there's this week's update. Not really what I'd like to have posted. But maybe, who knows, the next week will show marked improvement. Maybe his body just needs more time.
Saturday, June 15, 2013
What a week
I can't believe it's been a week already. Almost. Things are finally looking up. I've been quite stressed out, because Monkeyman wasn't doing as well as I thought he would. I prepared myself for a child who'll be tired and vomitting and not eating for a day (like always after anaesthesia). Then a day of having a sore throat and maybe some tears. Then a child who miraculously starts to look well, sleep well, becomes active and healthy and like a normal 5-year old little boy. Instead, I got a child that DIDN'T throw up (yay for valoid during the op!!), had extremely little throat pain and ate very well, like always, almost immediately.
And was MORE tired than usual. :-( This caught me totally off guard. I did NOT expect that. From after the operation, Monkeyman has laid down. He would sleep 12-13 hours solidly, then wake up and just lay in bed (very strange for him). Usually, he would jump up the moment he opens his eye (the reason why Mr N and Boeboe have to be sooooo quiet in the mornings when eating breakfast before school, because if they make one loud noise, Monkeyman would wake up and there's no sleeping some more with him!). This week, he would just lay in bed until long after 9am. Then he'd move his blanket and pillow to the couch in the sittingroom, and there he'd lay all day. Either playing iPad or watching tv. He'll stand up to go to the bathroom or sit up to eat. It wasn't nice to see.
By Thursday he did play once in the morning for about 30 minutes on the carpet, and again in the evening. So that gave me some hope. Friday, I went out for breakfast with friends. He was so excited, because his best friend was going with. We were there for 3 hours. He played most of the time on the carpet (pushing cars or lying down on the plastic matresses playing with the other plastic cubes). But still needed to lie down (on his seat!) twice. Like in lying down flat. Afterwards, he told me that was when he was so tired, he just felt like sleeping. And of course, he sat while eating. So all in all, probably better than the previous days, but still not really a good sign. :-( It worried me, seeing a 5-year old lying down in a place like Spur (family restaurant) metres away from an exciting play area where his best friend was running around. Rest of the day he just lied down at home again.
Then, today, he played all day long!! Sitting down, but still, he played! He moved from couch to chair to carpet, always sitting, but still playing. He played computer, iPad, Barbies with his sister, etc. I was really happy to see that. :-) So hopefully, he's at long last now on the mend. If we can now just get rid of those circles under the eyes! They're so much darker now than a week ago. And he has this veins that's prominent from the corner of his mouth down to the neck. It looks like he drew on himself with a blue pen. His jugular veins is also very pronounced, which is apparently a sign of pulmonary hypertension. So I'm worried that his heart was taking strain this week. Really scary. So I'll be so relieved when he's back to his old self. Or better yet...when that improvement the doctor spoke about, will become apparent!! He said we'll notice it immediately. :-( Well, quite the opposite happened. So sad. And so worrysome.
Tomorrow is Fathers Day, and we're visiting family. So let's hope he'll be playing around and not sitting/lying down all day.
And was MORE tired than usual. :-( This caught me totally off guard. I did NOT expect that. From after the operation, Monkeyman has laid down. He would sleep 12-13 hours solidly, then wake up and just lay in bed (very strange for him). Usually, he would jump up the moment he opens his eye (the reason why Mr N and Boeboe have to be sooooo quiet in the mornings when eating breakfast before school, because if they make one loud noise, Monkeyman would wake up and there's no sleeping some more with him!). This week, he would just lay in bed until long after 9am. Then he'd move his blanket and pillow to the couch in the sittingroom, and there he'd lay all day. Either playing iPad or watching tv. He'll stand up to go to the bathroom or sit up to eat. It wasn't nice to see.
By Thursday he did play once in the morning for about 30 minutes on the carpet, and again in the evening. So that gave me some hope. Friday, I went out for breakfast with friends. He was so excited, because his best friend was going with. We were there for 3 hours. He played most of the time on the carpet (pushing cars or lying down on the plastic matresses playing with the other plastic cubes). But still needed to lie down (on his seat!) twice. Like in lying down flat. Afterwards, he told me that was when he was so tired, he just felt like sleeping. And of course, he sat while eating. So all in all, probably better than the previous days, but still not really a good sign. :-( It worried me, seeing a 5-year old lying down in a place like Spur (family restaurant) metres away from an exciting play area where his best friend was running around. Rest of the day he just lied down at home again.
Then, today, he played all day long!! Sitting down, but still, he played! He moved from couch to chair to carpet, always sitting, but still playing. He played computer, iPad, Barbies with his sister, etc. I was really happy to see that. :-) So hopefully, he's at long last now on the mend. If we can now just get rid of those circles under the eyes! They're so much darker now than a week ago. And he has this veins that's prominent from the corner of his mouth down to the neck. It looks like he drew on himself with a blue pen. His jugular veins is also very pronounced, which is apparently a sign of pulmonary hypertension. So I'm worried that his heart was taking strain this week. Really scary. So I'll be so relieved when he's back to his old self. Or better yet...when that improvement the doctor spoke about, will become apparent!! He said we'll notice it immediately. :-( Well, quite the opposite happened. So sad. And so worrysome.
Tomorrow is Fathers Day, and we're visiting family. So let's hope he'll be playing around and not sitting/lying down all day.
Friday, May 10, 2013
Van bakboord na stuurboord
The title translates to From port to starboard. It's a saying in my hometongue when you get send from one person to the next to the next to the next, without resolving the issue at hand. Well, that's precisely how I feel at this moment. From GP to Pead to Cardiologist to ENT....
So yes, that's our next step. The Ear, Nose and throat specialist. :-( Four specialists in little more than a week. FUN (not). So, the pediatric cardiologist couldn't find anything wrong either. Good news is, his heart is structurally perfect!! No deformities, valves working perfectly, etc. Yay!!!
The bad news is, something probably is up, because his heart is slightly enlarged on the right side, and it beats too hard. But it's not caused by the heart itself, it's something else causing it. The area where it is enlarged, points to a chest/throat/sinus problem. She ruled out the lungs, no asthma or anything. So that leaves throat/sinus. Hence, the ENT next. He has to see if he can find the underlying cause, maybe like an anatomical deformity in the nose area. If not, then a sleep study overnight will be the next step.
Ag, this is just getting so frustrating. When can we have an issue with the kids that's just straightforward and easy to diagnose?! Does all parents go through this type of thing? Why do I feel so alone in this then? Even Mr N remarked on the way home that it's strange that we have 3 older kids, and one after the other we're finding something "wrong" with each one.
And everytime they were age 5...
It was a long, long day. I stood up early to take Monkeyman to school, and he was having none of that. Just wanted to sit. I coached him and eventually we left the house an hour later. Got back, put baby to sleep. Gave her lunch after her nap, cleaned the house, fetched Monkeyman and gave him a bath and washed his hair. Then gave him lunch. Pack the nappybag and put the kids in the car. Fetched Mr N and Boeboe from tennis (they had it directly after school). Drove directly to the hospital where the appointment was quite long with the sonar and EKG. Fortunately, they put a nice movie on for Mr N and Boeboe, so we only had to deal with a (very tired) baby and Monkeyman. By the time we got home, it was after 6pm and dark and cold. And the minute Monkeyman stepped inside, he said he's nauseous. I took him to the bathroom where he promptly threw up (in the loo fortunately). He lied down on his couch, and perked up later and haven't vomitted again. Not sure what's going on?!
So ya, eventful and LONG day. Thank goodness it's weekend. I'm in desperate need of sleep (Peanut's cutting her top teeth), relaxation and distraction. I'm taking the kids shopping for winter clothes tomorrow and on Sunday we're celebrating Mothersday. I'm hoping for a day where I don't need to do much. But with a baby in the house, I doubt if that'll pan out this year, LOL.
So yes, that's our next step. The Ear, Nose and throat specialist. :-( Four specialists in little more than a week. FUN (not). So, the pediatric cardiologist couldn't find anything wrong either. Good news is, his heart is structurally perfect!! No deformities, valves working perfectly, etc. Yay!!!
The bad news is, something probably is up, because his heart is slightly enlarged on the right side, and it beats too hard. But it's not caused by the heart itself, it's something else causing it. The area where it is enlarged, points to a chest/throat/sinus problem. She ruled out the lungs, no asthma or anything. So that leaves throat/sinus. Hence, the ENT next. He has to see if he can find the underlying cause, maybe like an anatomical deformity in the nose area. If not, then a sleep study overnight will be the next step.
Ag, this is just getting so frustrating. When can we have an issue with the kids that's just straightforward and easy to diagnose?! Does all parents go through this type of thing? Why do I feel so alone in this then? Even Mr N remarked on the way home that it's strange that we have 3 older kids, and one after the other we're finding something "wrong" with each one.
And everytime they were age 5...It was a long, long day. I stood up early to take Monkeyman to school, and he was having none of that. Just wanted to sit. I coached him and eventually we left the house an hour later. Got back, put baby to sleep. Gave her lunch after her nap, cleaned the house, fetched Monkeyman and gave him a bath and washed his hair. Then gave him lunch. Pack the nappybag and put the kids in the car. Fetched Mr N and Boeboe from tennis (they had it directly after school). Drove directly to the hospital where the appointment was quite long with the sonar and EKG. Fortunately, they put a nice movie on for Mr N and Boeboe, so we only had to deal with a (very tired) baby and Monkeyman. By the time we got home, it was after 6pm and dark and cold. And the minute Monkeyman stepped inside, he said he's nauseous. I took him to the bathroom where he promptly threw up (in the loo fortunately). He lied down on his couch, and perked up later and haven't vomitted again. Not sure what's going on?!
So ya, eventful and LONG day. Thank goodness it's weekend. I'm in desperate need of sleep (Peanut's cutting her top teeth), relaxation and distraction. I'm taking the kids shopping for winter clothes tomorrow and on Sunday we're celebrating Mothersday. I'm hoping for a day where I don't need to do much. But with a baby in the house, I doubt if that'll pan out this year, LOL.
Thursday, May 9, 2013
And here we go again
This one isn't about Boeboe. Yes, I know, I should update on her again. But today, my mind is filled with my little boy. Sometimes, I marvel at the fact that I could love him SO very much, when I already loved 2 other children around the moon and back. How come a parent's heart can expand to fit in all of this love?
He's 5 now, and becoming a real little boy! (I once asked my friend, "as opposed to what, a wooden doll?" when she said this of her boy, hahahaha.) Maybe it's an age thing. But he's so much more into boy games now. One day a few weeks ago, Boeboe came running in from outside crying. Apparently, she and Monkeyman was playing, when Mr N decided to go kick a ball outside. And Monkeyman dropped his sister like a hot potato to rather kick the ball with Mr N. She felt cheated and done in. So I tried to explain to her that Monkeyman is a boy, and boys like to play boys games. She was very affronted, and told me "But mommy, we were playing a game that were for boys AND girls! We were pretending to be baby birds!!!!" She honestly couldn't grasped that that isn't the type of game boys are usually into...hahahahaha. Ah well, at least I've succeeded in not putting my kids into little gender boxes (too much)!
So ya, Monkeyman now likes boy-things. Kicking ball, playing tennis, sword-games and screaming pow pow while pointing a non-existing gun in the hand at an invisible alien. So much imagination, little boys!!
So what does my heading have to do with any of this? Well, we're on the diagnostic road again. :-( Can you believe that? Honestly, I think the doctors are going to start labelling us as munchausen-by-proxy parents! Someone who would hurt their own child to get the attention of medical professionals. Ha! Who on earth would LIKE this road? I just can't understand that. Anyhoo, that's beside the point now. We're looking for another diagnoses. This time, in Monkeyman. It's just fair you see. Mr N has the epilepsy, and had all the attention from his parents for months during that time he was diagnosed and put on medication. Then Boeboe came along and had our focus and attention for years with the tethered cord. So now it's monkeyman's turn!
:(
Seriously though, I try to see the humour, but I'm tired. I don't want to do this. I don't want to worry about another child, another diagnoses, another long road. Honestly, I don't think I'm up to it again. Sniff sniff. They say God doesn't give you anything you can't handle. How come God thinks I'm so friggen strong when I'm NOT?
Well, as you know, if you've frequented this blog (or know us) I've always complained about Monkeyman's odd tiredness. Even as a baby, he'd crawl around for a while, laughing, playing, and then suddenly, just press his face down on the carpet or his blanket or my feet, and just lay his little body down. Not sleeping, not closing his eyes, just as if his whole body was tired (not sleepy). Or the way he would, out of the blue, stopped playing as a toddler, and just go lie down on the couch. He decided on one couch, and I swear, half of his awake time in his life has been spent on that couch. :-( Of course I sometimes wondered if it was because of the tv, or laziness, or being spoilt. Countless times though, I would switch the tv off the moment he starts playing in the morning (or never put in on) and check him. Without fail, he would play about 30-60 min (age 1-3), then go lie down with his blanket. Even when he had nothing to watch, nothing to do, he would just lie down and clutch his blankie. He would play with his fingers, humm to himself, scratch his head, play with his blankie, etc. Or sometimes He'd fetch a little car and just lie on the couch pushing his little car. It sometimes really broke my heart, seeing him like that. All quiet and tired. In time (and I'm literally talking about months/years) I caved and indulged him more with tv at those times. Letting him play, then when he's bushed, let him watch a movie with the request that when the movie is done, he needs to play again. It usually worked well.
What also convinced me in those days that he wasn't faking, was that even when he missed his Boeboe all day while she's at school, he'd still only play about 30-60min with her when she gets home. Then, doesn't matter how much fun he seemed to be having, he would go lie down. Frustrating Boeboe because she wasn't done with the game. Even when other friends visited, Monkeyman would only play a while, then goes to have a lie-down. I remember him "playing" from the couch while other kids tried to entice him off it. He would lie there, laughing with them, using his arms and legs, but keeping his body horisontal. Just for a while, almost like he had batteries that needed recharging. Then he'd jump up and played again. For another hour. Sometimes like with a birthday party when it's chaos and so many visitors, he would push himself. The moment the last child is gone, he would crash. Literally. The rest of the day he would spent on that couch. Unable and unwilling to do anything more than lying down. Sometimes he would fall asleep and wake up a bit better, but since age 3 he dropped his afternoon nap and it rarely happenend thereafter again.
Writing it out like this, it makes me feel guilty, for not pushing this more. It really does sound weird for a 2 or 3-year old little boy, doesn't it? I remember speaking to other parents, who complained that their boys are just non-stop. They run and plays all day long, non-stop. They thought Monkeyman very very weird. I couldn't blame them! Mr N wasn't hyperactive or even close to it, but even he was totally the opposite to Monkeyman at that age. So yes, why didn't I do more? I don't know. Since I noticed this (around age 1 I'd guess??), I asked about it at every pead check, every GP visit, every dr I've seen with him. He wasn't ill much, so this wasn't many times. But still, I never failed to ask about this every time I saw a dr with him. Age 2.5 years, I told my husband I'm worried, so I took him with when I had to take Boeboe to the pead. She listened to his heart and gave him a thorough checkup. And sent him off for some bloodtests (glucose, thyroid, iron, whiteblood count, etc.). It all came back normal, except for low seratonin that could point to low iron, though his iron count was normal. So he got 3 months of iron supplementation. It didn't help much. Not at all for the day, and only a tiny, tiny bit maybe for his night wakings (which only stopped long after age 3).
Over the years, it has become much less noticeble, and after the pead told us they could find nothing wrong when he was almost 3, I just accepted him as being unique. It did, afterall, fit in with his whole personality. The reserved, quiet, calm, contend, sweet little thing that he is. Both his dad and his grandpa was the same. Always tired as children. So I thought ah well, must be a family thing. Strange to me, but normal to them, iykwim?
A few weeks ago though, he was sitting on the couch playing something (think it was iPad), when he stood up to look for me in the kitchen. He told me that his heart is beating really fast. I was busy and barely registered what he's saying. Just nodding my head and said Oh? So off he went, happy that mom wasn't worried. A few days later though, the same thing happened. This time, I measured his pulse. It was 98, which didn't register to me as being really high (though I had no experience or knowledge on how high it should be). But what I found strange, was that again, he wasn't doing any excerzises. And his heart was beating so rapidly, that I could feel and see it being in overdrive. His shirt was moving slightly from the beating. I was mildly concerned, but then forgot about it again. Until beginning last week, while we were all watching tv as a family one evening. He felt it again, and this time it measured 102. I told my husband about the previous 2 episodes, and he looked a bit concerned. So I told him that maybe I should just take him for a checkup at the GP (general practitioner - medical doctor).
The dr told me that he'll probably going to have to refer us to a pediatric cardiologist. For the first time, I realised that this might not be nothing. I guess I was in denial, because I really, really can't face this road again. The road of not knowing what's up with your child. The road where you know something's wrong, but you don't know what it is. How dangerous or life threatening it is. Or how long it will be until you know. What procedures your child will need to go through before you know. And what and when the end of the road will be. We've been through it twice, with both the older kids. We couldn't face it again.
So ya, I got a little scared when the dr mentioned "cardiologist". I know I know, it's way too early to stress. It's most definitely putting the cart before the horses. Just silly. But when you've been through this before, you can't help but worry. With Mr N, I thought - ag, what's the chance that it is anything really? I'm probably making a whole mountain of a tiny heap of sand. I wasn't even sure if I should take him to a dr!! And then, it turned out to be something big. With Boeboe, I thought, what makes us so special that we'd have TWO children with abnormalities. Chances are so much better that she's just fine. Nothing wrong with her. Well, look how that turned out! She was so special, she's probably the only child in our whole country (of 50+ million people) who got an occult tethered cord that couldn't even be visualised during the untethering operation.
So ya, what makes us so special that our 3rd child would also have abnormalities?!?! This is just too much.
Anyhoo, the dr measured Monkeyman's heartrate with this nifty little gadget. He clips it on the finger, and it has a little screen on which the pulserate shows digitally. It was a bit erratic though, and quite fast. It were something like 106, 98, 89, 102, 90, 99, 80, 95, 105. Etc. And it only went to 80 once. Most of the time it was in the 90's and a few over the 100's. The dr listened a long while to his chest and lungs, and could hear his heart going faster through the stetoscope. He didn't like hearing that, I could see it on his face. BUT, as awfully concerning as all of this sounds now, I didn't get the idea that the dr is really stressed out about anything. Just mildly worried, concerned. He said that something's up, and we need to go back to the pead. I guess because Monkeyman's heart was still beating rythmically, not arythmically, he changed his mind about the cardiologist. He wanted the pead to do some bloodtests to see if it could be a systemic disease that caused his heart to go faster even when the child wasn't running around. Together with his history of always being physically tired, and having legpains, the dr thought something must be up.
So off we went, back to the pead. She wasn't concerned when I started speaking, and mentioned some of it as normal (sinus arrythmia). But then she read the sealed note the GP send her (I was sooooo curious and desperately wanted to open it, but felt too guilty) and you could see her mind started ticking over. She frowned and slowly tucked the note into Monkeyman's folder, very deeply in thought. Then declared that we'd probably need to send him to a cardiologist. You can imagine how much I wish I read that letter when I had the chance!!
Anyway, so she did the physical, and said that she really can't hear any murmur or rushing sound on his heart. It all sounds normal. She asked us about family history, and then said that having heart palpitations like Monkeyman had, where you can feel your heartbeat going faster/harder that it stops you in your tracks, isn't normal and needs checking out. She mentioned that his mitral valve might not be closing properly. So yeah, this is why I said "And here we go again". Because we've now been referred onto the next specialist (pediatric cardiologist). Fortunately, we got an appointment quickly, we're going tomorrow. It sounds like it would involve a number of tests (EKG and sonar).
I'm grateful the pead doesn't believe it's his thyroid or diabetes or anything like that. But I'm scared that she thinks it might be his heart. I know, lots of children/adults have mild heart problems. But when it's your own child, and you don't know what it is yet, you can't help but worry. Especially since his grandpa was similar as a child. And then, when he was around age 30, he needed massive open heart surgery where a valve was replaced with a mechanical valve. As long as I've known PIL, my FIL had always taken medication for his heart, and it needs to be very, very carefully monitored. His bloodlevels can't be too thick or too thin, so bloodtests every couple of months year after year after year after year... He can't take any medication, not even over the counter, without asking his doctors first, because it might have an influence on his bloodlevels. He always needs to be careful, always think about his heart, and his wife is always so worried about him. The first time I met him, he told me if I could hear that tick. It was a loud, metallic clicking sound. Yes, that's the valve! I was amazed, it was louder than a watch or alarmclock.
They believe (never comfirmed) that he might've had rheumatic fever as a child, that caused the problems to the valve. But what if it isn't? What if it's genetic? Or, what if the same happened to Monkeyman when he got scarlet fever age 10 months? He was so so so ill, I thought that night that we're going to loose him. Yes, he got peniccillen, so chances of getting rheumatic fever was slim, and wouldn't I have noticed it? I watched him like a hawk, didn't I?
So ya, put that history plus Monkeyman's tiredness plus a couple of drs mildly worried together with being referred to a heart specialist, and you have one worried mommy. :-(
He's 5 now, and becoming a real little boy! (I once asked my friend, "as opposed to what, a wooden doll?" when she said this of her boy, hahahaha.) Maybe it's an age thing. But he's so much more into boy games now. One day a few weeks ago, Boeboe came running in from outside crying. Apparently, she and Monkeyman was playing, when Mr N decided to go kick a ball outside. And Monkeyman dropped his sister like a hot potato to rather kick the ball with Mr N. She felt cheated and done in. So I tried to explain to her that Monkeyman is a boy, and boys like to play boys games. She was very affronted, and told me "But mommy, we were playing a game that were for boys AND girls! We were pretending to be baby birds!!!!" She honestly couldn't grasped that that isn't the type of game boys are usually into...hahahahaha. Ah well, at least I've succeeded in not putting my kids into little gender boxes (too much)!
So ya, Monkeyman now likes boy-things. Kicking ball, playing tennis, sword-games and screaming pow pow while pointing a non-existing gun in the hand at an invisible alien. So much imagination, little boys!!
So what does my heading have to do with any of this? Well, we're on the diagnostic road again. :-( Can you believe that? Honestly, I think the doctors are going to start labelling us as munchausen-by-proxy parents! Someone who would hurt their own child to get the attention of medical professionals. Ha! Who on earth would LIKE this road? I just can't understand that. Anyhoo, that's beside the point now. We're looking for another diagnoses. This time, in Monkeyman. It's just fair you see. Mr N has the epilepsy, and had all the attention from his parents for months during that time he was diagnosed and put on medication. Then Boeboe came along and had our focus and attention for years with the tethered cord. So now it's monkeyman's turn!
:(
Seriously though, I try to see the humour, but I'm tired. I don't want to do this. I don't want to worry about another child, another diagnoses, another long road. Honestly, I don't think I'm up to it again. Sniff sniff. They say God doesn't give you anything you can't handle. How come God thinks I'm so friggen strong when I'm NOT?
Well, as you know, if you've frequented this blog (or know us) I've always complained about Monkeyman's odd tiredness. Even as a baby, he'd crawl around for a while, laughing, playing, and then suddenly, just press his face down on the carpet or his blanket or my feet, and just lay his little body down. Not sleeping, not closing his eyes, just as if his whole body was tired (not sleepy). Or the way he would, out of the blue, stopped playing as a toddler, and just go lie down on the couch. He decided on one couch, and I swear, half of his awake time in his life has been spent on that couch. :-( Of course I sometimes wondered if it was because of the tv, or laziness, or being spoilt. Countless times though, I would switch the tv off the moment he starts playing in the morning (or never put in on) and check him. Without fail, he would play about 30-60 min (age 1-3), then go lie down with his blanket. Even when he had nothing to watch, nothing to do, he would just lie down and clutch his blankie. He would play with his fingers, humm to himself, scratch his head, play with his blankie, etc. Or sometimes He'd fetch a little car and just lie on the couch pushing his little car. It sometimes really broke my heart, seeing him like that. All quiet and tired. In time (and I'm literally talking about months/years) I caved and indulged him more with tv at those times. Letting him play, then when he's bushed, let him watch a movie with the request that when the movie is done, he needs to play again. It usually worked well.
What also convinced me in those days that he wasn't faking, was that even when he missed his Boeboe all day while she's at school, he'd still only play about 30-60min with her when she gets home. Then, doesn't matter how much fun he seemed to be having, he would go lie down. Frustrating Boeboe because she wasn't done with the game. Even when other friends visited, Monkeyman would only play a while, then goes to have a lie-down. I remember him "playing" from the couch while other kids tried to entice him off it. He would lie there, laughing with them, using his arms and legs, but keeping his body horisontal. Just for a while, almost like he had batteries that needed recharging. Then he'd jump up and played again. For another hour. Sometimes like with a birthday party when it's chaos and so many visitors, he would push himself. The moment the last child is gone, he would crash. Literally. The rest of the day he would spent on that couch. Unable and unwilling to do anything more than lying down. Sometimes he would fall asleep and wake up a bit better, but since age 3 he dropped his afternoon nap and it rarely happenend thereafter again.
Writing it out like this, it makes me feel guilty, for not pushing this more. It really does sound weird for a 2 or 3-year old little boy, doesn't it? I remember speaking to other parents, who complained that their boys are just non-stop. They run and plays all day long, non-stop. They thought Monkeyman very very weird. I couldn't blame them! Mr N wasn't hyperactive or even close to it, but even he was totally the opposite to Monkeyman at that age. So yes, why didn't I do more? I don't know. Since I noticed this (around age 1 I'd guess??), I asked about it at every pead check, every GP visit, every dr I've seen with him. He wasn't ill much, so this wasn't many times. But still, I never failed to ask about this every time I saw a dr with him. Age 2.5 years, I told my husband I'm worried, so I took him with when I had to take Boeboe to the pead. She listened to his heart and gave him a thorough checkup. And sent him off for some bloodtests (glucose, thyroid, iron, whiteblood count, etc.). It all came back normal, except for low seratonin that could point to low iron, though his iron count was normal. So he got 3 months of iron supplementation. It didn't help much. Not at all for the day, and only a tiny, tiny bit maybe for his night wakings (which only stopped long after age 3).
Over the years, it has become much less noticeble, and after the pead told us they could find nothing wrong when he was almost 3, I just accepted him as being unique. It did, afterall, fit in with his whole personality. The reserved, quiet, calm, contend, sweet little thing that he is. Both his dad and his grandpa was the same. Always tired as children. So I thought ah well, must be a family thing. Strange to me, but normal to them, iykwim?
A few weeks ago though, he was sitting on the couch playing something (think it was iPad), when he stood up to look for me in the kitchen. He told me that his heart is beating really fast. I was busy and barely registered what he's saying. Just nodding my head and said Oh? So off he went, happy that mom wasn't worried. A few days later though, the same thing happened. This time, I measured his pulse. It was 98, which didn't register to me as being really high (though I had no experience or knowledge on how high it should be). But what I found strange, was that again, he wasn't doing any excerzises. And his heart was beating so rapidly, that I could feel and see it being in overdrive. His shirt was moving slightly from the beating. I was mildly concerned, but then forgot about it again. Until beginning last week, while we were all watching tv as a family one evening. He felt it again, and this time it measured 102. I told my husband about the previous 2 episodes, and he looked a bit concerned. So I told him that maybe I should just take him for a checkup at the GP (general practitioner - medical doctor).
The dr told me that he'll probably going to have to refer us to a pediatric cardiologist. For the first time, I realised that this might not be nothing. I guess I was in denial, because I really, really can't face this road again. The road of not knowing what's up with your child. The road where you know something's wrong, but you don't know what it is. How dangerous or life threatening it is. Or how long it will be until you know. What procedures your child will need to go through before you know. And what and when the end of the road will be. We've been through it twice, with both the older kids. We couldn't face it again.
So ya, I got a little scared when the dr mentioned "cardiologist". I know I know, it's way too early to stress. It's most definitely putting the cart before the horses. Just silly. But when you've been through this before, you can't help but worry. With Mr N, I thought - ag, what's the chance that it is anything really? I'm probably making a whole mountain of a tiny heap of sand. I wasn't even sure if I should take him to a dr!! And then, it turned out to be something big. With Boeboe, I thought, what makes us so special that we'd have TWO children with abnormalities. Chances are so much better that she's just fine. Nothing wrong with her. Well, look how that turned out! She was so special, she's probably the only child in our whole country (of 50+ million people) who got an occult tethered cord that couldn't even be visualised during the untethering operation.
So ya, what makes us so special that our 3rd child would also have abnormalities?!?! This is just too much.
Anyhoo, the dr measured Monkeyman's heartrate with this nifty little gadget. He clips it on the finger, and it has a little screen on which the pulserate shows digitally. It was a bit erratic though, and quite fast. It were something like 106, 98, 89, 102, 90, 99, 80, 95, 105. Etc. And it only went to 80 once. Most of the time it was in the 90's and a few over the 100's. The dr listened a long while to his chest and lungs, and could hear his heart going faster through the stetoscope. He didn't like hearing that, I could see it on his face. BUT, as awfully concerning as all of this sounds now, I didn't get the idea that the dr is really stressed out about anything. Just mildly worried, concerned. He said that something's up, and we need to go back to the pead. I guess because Monkeyman's heart was still beating rythmically, not arythmically, he changed his mind about the cardiologist. He wanted the pead to do some bloodtests to see if it could be a systemic disease that caused his heart to go faster even when the child wasn't running around. Together with his history of always being physically tired, and having legpains, the dr thought something must be up.
So off we went, back to the pead. She wasn't concerned when I started speaking, and mentioned some of it as normal (sinus arrythmia). But then she read the sealed note the GP send her (I was sooooo curious and desperately wanted to open it, but felt too guilty) and you could see her mind started ticking over. She frowned and slowly tucked the note into Monkeyman's folder, very deeply in thought. Then declared that we'd probably need to send him to a cardiologist. You can imagine how much I wish I read that letter when I had the chance!!
Anyway, so she did the physical, and said that she really can't hear any murmur or rushing sound on his heart. It all sounds normal. She asked us about family history, and then said that having heart palpitations like Monkeyman had, where you can feel your heartbeat going faster/harder that it stops you in your tracks, isn't normal and needs checking out. She mentioned that his mitral valve might not be closing properly. So yeah, this is why I said "And here we go again". Because we've now been referred onto the next specialist (pediatric cardiologist). Fortunately, we got an appointment quickly, we're going tomorrow. It sounds like it would involve a number of tests (EKG and sonar).
I'm grateful the pead doesn't believe it's his thyroid or diabetes or anything like that. But I'm scared that she thinks it might be his heart. I know, lots of children/adults have mild heart problems. But when it's your own child, and you don't know what it is yet, you can't help but worry. Especially since his grandpa was similar as a child. And then, when he was around age 30, he needed massive open heart surgery where a valve was replaced with a mechanical valve. As long as I've known PIL, my FIL had always taken medication for his heart, and it needs to be very, very carefully monitored. His bloodlevels can't be too thick or too thin, so bloodtests every couple of months year after year after year after year... He can't take any medication, not even over the counter, without asking his doctors first, because it might have an influence on his bloodlevels. He always needs to be careful, always think about his heart, and his wife is always so worried about him. The first time I met him, he told me if I could hear that tick. It was a loud, metallic clicking sound. Yes, that's the valve! I was amazed, it was louder than a watch or alarmclock.
They believe (never comfirmed) that he might've had rheumatic fever as a child, that caused the problems to the valve. But what if it isn't? What if it's genetic? Or, what if the same happened to Monkeyman when he got scarlet fever age 10 months? He was so so so ill, I thought that night that we're going to loose him. Yes, he got peniccillen, so chances of getting rheumatic fever was slim, and wouldn't I have noticed it? I watched him like a hawk, didn't I?
So ya, put that history plus Monkeyman's tiredness plus a couple of drs mildly worried together with being referred to a heart specialist, and you have one worried mommy. :-(
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