Boeboe

Gosh, I haven't posted much this month hey? After last month, I'm sure you enjoyed the break! I certainly needed one. Just to get some normality back in my life.

So, here's the promised update on my daughter. Where to begin?

She turned 10 a few weeks ago. A whole decade. I can't believe it. Where did the years go? It saddens me. But, seeing her grow up into this beautiful young lady, also warms my heart. She has exceptionally beautiful eyes, skin tone and add to that her thick, luscious black hair, and it's clear that she's not going to be like her mom. I was a bit of an ugly duckling as a child. A wallflower. Always hiding away behind my books. Boeboe, she's beautiful. And it makes me happy for her. Especially with her lack of confidence, it can only help her a bit.

Schoolwise, it was an extremely difficult year. The first term was just the normal adjustment to having multiple teachers, multiple subjects, being more independant, having a much larger workload, a faster workpace, etc. Right from the start though, we realised she's struggling. The adjustment to the teachers went very well, but the work was a whole different ballgame. She used to get very good marks despite her obvious academic problems, in grades 1 - 3. I understood it (why the teachers awarded her efforts), but it made it difficult for me to get her the help she needed. In grade 4, the teachers aren't so lenient, and she fell behind almost immediately. Though, she surprised me the first term by studying hard, and being able to get through the work in the same amount of time as her brother did. Maybe even less. Studying came more natural to her than I thought it would. She was so proud of herself! And I was immensely relieved.

The first exam/test series went very well. She completed all exams in time, got average to above average marks and I sighed a HUGE sigh of relief. Until the June exams (mid-year in our country). O gosh, it went awful. In our country, at the moment, grade 4's have 6 exams to write, of which they have to pass home language which is Afrikaans, English (as 2nd language) and maths. Also, 2 of the remaining 3 subjects (different geography and history, technology and science, cultures and arts with life orientation). Boeboe failed the 3 most important ones. Her languages and maths. Because she couldn't finish any one of them in time. The parts that she did complete, she got between 60 and 90% for, so clearly the only problem was that SHE'S.TOO.SLOW. Sooooo sloooow. Fortunately, her term mark pulled her through in English and maths, but unfortunately not in Afrikaans. She still failed her home language subject, which is an immediate fail of the term. So so so sad. She was devastated, heartbroken and desperate and worried and felt like such a huge failure. My heart broke into thousands of pieces during that time. I couldn't even blog about it. I was just so so sad for my little girl. She constantly questioned herself, and why she's so stupid, so slow, such an idiot, so awful, when her classmates and brother does so well. I had no answers. Inside, I screamed about the why's myself.

She works so hard. She works her BUTT off. She'll easily do 3-4 hours of homework, AFTER going to school for 6 hours. How awful, at age 9??? How bloody darn awful. And unfair. And WRONG. That a child has to work that hard. But she does it. Sometimes she gets upset, sometimes she'll cry and beg me to stop the torture. But most times, she just gets down to it and WORK. Work work work. I've never seen a child work that hard, day after day after day. Mr N never, ever had to work that hard. Quite the opposite. His work ethics lacks seriously, compared to her. But he sails through life and academics, while Boeboe struggles to get mediocre marks. How sad for her. How unfair life can be.

We're busy working with the school on this. The teachers has promised to help from their side, and I already noticed a few small differences this made. And this past test series, she passed all subjects again. She studied her butt off, and I worked my butt off to make summaries of her work for her that narrows it down to the most important bits. She didn't do well in English at all, but it still counted as a pass. Afrikaans went much better. And though she again didn't complete the test in the time given for maths, she still (just) passed. Literally by the skin of her teeth, because she only completed about two thirds of the exam. Fortunately, for that part, she got 75% for her answers.

We've also took her back to the psychologist she saw 2 years ago. She evaluated her, and said she qualifies for extra time during exams, and she'll get the ball rolling on getting a conscession (hopefully) from the department of Education to grant it to Boeboe. Let's hold thumbs the department gives it to her! I'm sure it'll make all the difference in the world. Because Boeboe CAN. She has the abilities, she just lack the speed, drive and maturity. I ALWAYS said that Boeboe should've started school a year late. But her teachers in grade R refused to listen to me, just kept on saying "she's fine". And now I know, for a fact, that it would've made the world of difference to her. Now, it's too late. She fears failing more than anything. I can't keep her back for one year to make her life easier, because emotionally, it might just destroy her. So all we can do now, is support her best we can.

So please think about us in about a month or so's time, when we start with the final exam of the year. Until she has that "pass grade 4" in her hands, we're going to stress. I don't even want to think about the alternative just yet. If need be, we'll deal with it when we get there.

So ya, that's Boeboe's academic and school issues. On to her neural tube defect. Well, I wish I had only good news on that front. Unfortunately, I don't. Something's up, and I don't know what it is. I have this nausea pushing up when I just think about it. I know something's wrong. I just know.

She complains of a number of symptoms. Her back feels like it's too tight. It pulls and that hurts. She says it feels like it's pulling her backwards. I can just cry. I am crying.

Her back aches, her legs aches. Her bladder leaks more. Her nr 2's is still the same. Her feet is still the same. She had 1 nighttime accident a few months back. Something just aint right.

And I don't know what to do. No, that's not true. I know what to do. I don't want to do it. I don't want to face it. I'm playing ostrich, because I just can't, at this moment, handle that as well. Not with trying to figure Monkeyman's issues out. I just can't. I can't. I can't. I can't.

I will. I just need a little time. Then I'll take her for a checkup, and most likely a repeat MRI. Maybe, if we're lucky, it's just scartissue that bothers her. Maybe it'll loosen up in time. Maybe stretching excersizes will help. She told her psychologist that it feels like we're not helping her with the issue. That broke my heart. I'm waiting.... for what? For the signs to dissapear? For confirmation that it's not a fleeting, passing issue? For times to be less hectic? For our ship with treasure to come in? I don't know. I guess I'll have to make some phone calls today. One, to the neurosurgeon's office. I feel like throwing up.

The other sad and difficult thing, is that the psychologist diagnosed her with an anxiety disorder. I'm not ready to go into much deeper detail just yet. We've been referred to a psychiatrist, and he'll give a more detailed diagnosis and probably prescribed medication. I'll do what's needed for my daughter, but the thought of her having to deal with a mental disorder at age 10 is hard. And just thinking about going through the whole ordeal of medication, side effects, adjusting dossages, argh, I can just scream. :-(

This post was about Boeboe only, so I'll create another about Monkeyman at some point. For now, everything about his "case" is put on hold for a few weeks. Currently, he's pretty much the same. Oh, and I'll update the Monkeyman's PH story page as well as soon as I get time.

Here's a few pics of Boeboe's birthday. We handed her her gifts early morning before school (they're allowed to dress in civvies on their birthdays):

She was very excited to get what she wanted, though she thought
she wouldn't get it because it's rather expensive in our country

A camera! Her first real, digital camera. Something not even her
brother has yet. She took it with her to school for the picnic party
she had with her girlfriends during break. I do not put pics up of
other children whose parents' permission I do not have, so I
can't put it on here. Pity. She took really great pics, and had
alot of fun at her picnic party. Her friends made such a fuss
about her.

Monkeyman gave her a soft bunny toy. She wanted it for
literally years! Little Peanut looking on in excitement.

Argh...I'm so over it!!!

Yeah, I'm fed-up. I'm tired. I DON'T WANT TO DO THIS. I can't emphasize it MORE. I don't like going to the drs. I don't like putting my children through (sometimes painful) tests. I don't like driving around to appointment after appointment. I don't like dragging a baby around, disrupting her nap-routine. I don't like sitting in waiting rooms, especially not with an active, energetic, stubborn baby that just wants to walk around. I don't like drs needing to call me, or me calling them. I hate getting calls, but especially not from people I deem have much more important things to do than call me.  I don't like the waiting-for-results. I don't like the stress. I don't like the worry. I don't like the nightmares and lack of sleep. I don't like ANY of this.

Sorry. Just thought I'd put that out there, first. Because yes, I know people are as fed-up of me and my "updates" on issues as much as I am fed-up of having to do it, and having to go through it! I'm not suffering from Munchausen by proxy, I assure you. Even though at times it might sound like it. I desperately want to stop this run-away train, and just say "F...-it, I do NOT want to be on this train anymore, I just want to believe my son is fine, so that we can just go on living our normal (busy) lives." (I apologise for the "f" word. I don't easily swear. I hate swearing. But gosh, sometimes it really does describe how one feels better!)

I honestly just want to drop it all and say: Ag, my son is FINE. He's NORMAL. He'll be okay! Why why why do we need to do this? I do not have the time. I do not like doing this. My son doesn't like it. His dad hates it! Why why why do we do this to ourselves??? To our precious son??

Because the pulmonary hypertension scared the sh!t out of me. Because I realised, with a huge shock to my system, that ignoring the tiredness for more than 2 years, has caused my son to develop a very, very serious heart-lung disease that might have cost him his life. That at the very least, could've had serious, life-long implications to him. This was too awful, to just ignore. So even though I still believe that whatever is at the root of this problem, is probably not a life-threatening thing, I'm scared that leaving it again for 5 years in the hope that things will change, might bring along another awful disease. What if I leave it, and whatever is at the root, causes pulmonary hypertension AGAIN? Will Monkeyman be able to heal from a 2nd bout of it? Will his heart be able to? Can I take that chance?

So here we are. Looking for answers. Though we desperately wish we could just ignore it, and be HAPPY that the pulmonary hypertension is GONE!!! I'm still amazed and humbled by that. :-)

So where are we exactly? Well, we heard from the ENT. He couldn't get hold of the cardiologist for WEEKS. And when he did, she didn't have Monkeyman's file with her, so said she'll phone him back, and didn't. He had to phone her again, etc. It tells me that without a file, she didn't know who Monkeyman was, what his problems and diagnosis were, and she probably didn't care. Which is fine. But then we don't care about her (feelings) either.

So, we didn't cancel the 2nd opinion cardiologist appointment we made months ago, when everyone urged us to, because his current cardiologist didn't get back to me about why Monkeyman's tiredness would've gotten so much worse after the adenoidectomy.

That 2nd opinion cardiologist visit, was on Friday. This is going to turn into a looooong post, sorry.

Firstly, she was very thorough, and we liked her very very much. Even though she doesn't think it's the heart, she didn't wash her hands from us like the other cardiologist did. She took over his care, and she's going to drive this thing!!! Yay for fantastic doctors!! (Isn't this supposed to be the job of his primary care physician, which at his age should be his peadiatrician??)

Unfortunately, she (the pediatric cardiologist) also, like us, doesn't believe he's 100% fine, and that the tiredness has a cause that must be found before he starts grade R (similar to Kindergarten in other countries) next year January. She clearly was of the opinion that our pediatrician, previous cardiologist, and various drs we've seen over the years, have dropped the ball on Monkeyman. That they should've been much more thorough, YEARS ago already. :-(  I guess I should've been more adamant. I should've been his advocate. *mommy guilt kicking in*

A scary thing (to me) was when she tested his muscles. It suddenly dawned on me that I never thought it could be muscular dystrophy! How scary. But thank goodness, his muscles were absolutely fine. I guess this also excludes low muscle tone, which alot of people mentioned to me. I always had to say no, I don't believe it's that. Unfortunately. Something so easily fixable (in most cases), and so "normal" for kids to have. It would've been the best of diagnosis's. But my daughter had that, and the symptoms and "look" of it, just aint the same. Monkeyman's tiredness is way different, than just having muscle weakness. Anyway, I take it that the cardiologist's very thorough examination excludes this now for good.

So here's the crux of the visit (bullet pointing it for an easier read):

• Pulmonary Hypertension definitely gone, just a few small signs left - nothing to worry about
• EKG is perfectly normal this time (last time it wasn't due to the PH)
• Heart isn't enlarged anymore ( )
• Heart structure definitely normal (no leaky valves, etc.)
• Heart wall is thinned, abnormally so at places (for his age), and it has to be followed up yearly, as it could cause problems for him in the future - I'm trying to google this, but information on it is VERY scarce, in the absence of other congenital heart defects (Why oh why do we get all these rare conditions in our children??????)
• She couldn't visualise the one lung artery (on the sonar) where it goes into the lung. It might indicate a problem in the lower lung. Which might be nothing, or not. I don't think it showed up on the x-rays, so hopefully it's just nothing. Hopefully she will get back to me tomorrow, on the results of the x-rays.
  
  So the plan of action:
• She ordered bloodtests, including iron, though she doesn't believe the tiredness is from an iron problem or iron malabsorption - we'll do this in the next few days.
• She ordered urine tests that has to be first morning urine, 3 days in a row (what a schlep!! So not in the mood for this, NOT looking forward to it!).She believes he might have an overgrowth of fungus because of his chronic omeprazole for the GERD. Or that there might be a constant UTI causing the tiredness. I honestly don't see how a UTI could cause tiredness for 5 years, but never develop into a fever or have any other symptoms? Or doesn't go away when given a/b's for another disease? Though, he hasn't had a/b's that many times, just about 3x or so. And it's good that they do the urinalysis, for the other things they test for (like kidney function). And in any case, yesterday (just as luck would have it!), Monkeyman called me to say his wee looks "weird" and "orangy". I wanted to ignore and tell him it's just fine, but thought better of it and went to have a look. And it was pink! Aijaijai. Sigh.
• She ordered chest x-rays (already done Friday), which showed something, but the report is greek to me. I only understood the word "geringe" which means that whatever it is, is a slight problem. It didn't seem serious to me, and it didn't seem to indicate what she thought might be the problem. So I guess another thing that's been excluded (yay!).
• She's going to order a sleepstudy in a week or 2's time (waiting for her "person" that works with it to come back from leave). Like us, she believes sleep apnea might still be present, despite the PH resolving after the adenoidectomy, that might've caused obstructive sleep apnea.
• She says my mom's history is very interesting (unlike the other cardiologist who ignored me when I told her about it). Sadly she agreed that my mom wasn't handled correctly, something we all believed and knew but were unable to change, so so so sad. She says my mom's history, with my husband's sleep apnea, gives her some ideas, on what to look for.
• She says it might even be a mitochondrial disease. Something that's recently being diagnosed more and more in children, and Monkeyman's symptoms points to it being a possibility. But we'll get there if all the other things have been excluded. Personally, I'm not (yet) scared about it being such a serious thing. His symptoms just aint bad enough, iykwim? I've read a few moms' blogs who had to deal with this in their children, and you just can't compare my (little) complaints about Monkeyman with what they have to deal with.
• Also, she wants him to have a scope at some point, to check for sores or fungus in his stomach, which might explain the drain on his iron stores. It probably won't be the cause of his tiredness, so it's not an urgent test to do at this point.

So ya, you can now see why I started this whole post the way I did. I do not want to do all these tests. I don't want to go through all of this AGAIN. Really, I feel like crying. Not just for my son, and him having to go through all of these tests. But for me, having to do all of this. My plate is FULL. I don't have time (or want to make time) for tests and appointments and waiting rooms. I just want to enjoy the fact that he is so much better, and that the PH is gone, that the school exams is done, that Boeboe passed (yes, a whole other post I still need to do!!) and that most of the extra curricular activities has been stopped for this term. So just when life was supposed to slow down and get better after the stress we've been through for 4 months, I now have to do this. Aarrgghhhh. (And yes, I'm purposefully NOT focussing on the fact that we're indeed looking for something to be wrong with Monkeyman. I honestly cannot deal with that now. I'm gonna be optimistic and just concentrate on excluding instead of finding things).

I'll get to Boeboe's post in time. I know, I owe a huge update on her. My focus has completely shifted from her to Monkeyman for 4 months now, and I do get queries on how it's going with her. Sorry, I'll update as soon as I have time. It'll also be a long post, so bear with me. Thanx for all the support, and the prayers and the interest in our (usually very boring) lives.