Merry Christmas!!!

Can you believe it, Christmas is done and dusted already. I look forward to it all year, I love the preparation, the excitement, the plans, the gifts, the food, the vibe, the family-time, the lull in city-life, everything. And then it's over, just like that. But, it was fun!! So much fun. We had a fabulous holiday so far. Something we desperately needed. Just to forget about thinking worst case scenario's when looking at our middle 2 children. Just for a moment. It's never far from the mind, but for a few golden moments in time, it was good to really just forget. And be a normal family, with normal, healthy children without any swords hanging over their heads.

The kids went to visit their granny and grandpa for a week. They were spoilt rotten and had loads of fun. Though, Monkeyman was very tired, and it made him a bit teary. I also think he missed us. We phoned every night, and asked if they're okay to stay the week or if any one of them needed us to fetch them. But they said they were fine. The boys didn't want to stay longer than the planned 6 nights, but Boeboe wanted to stay one more night. That was good to hear, that she had a really good holiday. We missed them though. The house was quiet without them. Peanut was still with us, which was nice. She also missed them alot, and loved hearing their voices over the phone every day.

When the kids got back, we dived into the mess they called their rooms. Gosh, it took us forever. But their rooms are cleaned, most toys are sorted and new bedding and curtains hung. We decided to give up our spare bedroom, to Mr N. So he moved in there, and Monkeyman got his room. Boeboe stayed in hers. And Peanut is at long last out of our room (sniff sniff). My baby is growing up. :-( She's now happily sleeping in her own bedroom (Monkeyman's old room). Still waking up at night, at least twice. But we're coping okay with that.

So each child has their own room now. We bought bunkbeds with the bed ontop of a desk, for Monkeyman and Boeboe each. Mr N has less stuff in his room, so he got the double bed that came with the spare bedroom. And he has a lovely desk that his grandfather made him years ago. So they're all set now with bed, table and lots of space for everything. I got them all new duvets, and a few new curtains. So their rooms are looking SO GREAT! Wow, the difference a sorted house does. It just lessen the stress levels. I haven't taken pics of the rooms now that they're done. I'll do it in the next few days and post some of them.

After our week of cleaning and sorting, the in-laws visited for Christmas. We had a really great Christmas Eve, with good food, and the kids got to open some gifts. On Christmas morning they found gifts brought by Father Christmas during the night, and then we visited some more family for a wonderful Christmas lunch. Today, the in-laws has left again, which now leaves us with a quiet, relaxing week to look forward to before my husband has to go back to work. Fortunately, we have almost 3 weeks left before school starts again.

Here's some pics of the past month or so.

Here's a pic of Boeboe's spider bite. Probably around day 10 or so.
It was taken about 2 weeks ago, before they went to visit the
grandparents.

A close-up. All the wrinkled skin has now fallen off, and brand
spanking new skin is covering her toe perfectly. No lasting
damage or scars. Even the nail is perfect. For a while there
I thought she was going to loose the nail.

Isn't this the most adorable thing. Sibling love. Whenever he
sits on the floor, she will maneuvre backwards until she sits with
her back against him. She really adores all her siblings
just so so much.

 

Monkeyman didn't know he's also getting a new bed and desk.
He saw us put Boeboe's up in her room, and was so jealous.
So we surprised him one morning, leading him blindfolded
into his new room with his new stairs and bed all set up.
His face was priceless!!

On Christmas Eve. Very happy with his gifts.

She was so excited all day, she could barely wait for dinner to
finish.

Another happy child. :-)

Isn't she looking adorable with the Christmas cap?

 

Spoilt little boy!

He really wanted the little Dath Vader figure.

Loved tearing the paper off!

On Christmas morning! Father Christmas was here!

 

Look at how creative her daddy is. He made it look like a
little gift basket! All three got the same gift, so we had to try
and wrap them up differently so that the shapes didn't
give it away. They really thought they were all getting
something different because we made Boeboe's look like
a basket, and Mr N's like a house. Only Monkeyman's
was kept as the rectangle it really was.

So excited to start opening up.

Look mommy, a baby!

He loved being tricked with loads of newspapers to
change the shape of his gift.

Very chuffed with getting what he wanted from Father
Christmas - a tablet.

Smiles all around when everyone got one.

Except Peanut, she got a talking, singing, dancing baby doll,
which she absolutely adores.

 

My beautiful little girl. Not much bigger than her doll, LOL.

This is how it looks when everyone gets a tablet for Christmas!
There'll be strict rules in place about how many hours they're
allowed to play once school starts!

Dilated Cardiomyopathy, White blood count and Lungs

That's the 3 things wrong with our little boy. I'm sorry I haven't updated the blog shortly after our visit on Thursday. I've been a little numb. Not sure what to say, you know?

So here's the short (and long) of it:

• Monkeyman's left heart function (or ejection fraction) is up from 34% in September, to 36% in October and 42% in December. So that's excellent, really excellent news. Yay!!!
• The left wall is unchanged. Still too thin. This is called dilated cardiomyopathy, but, since his left heart isn't enlarged, and his right heart is almost back to normal size, he's technically not in cardiomyopathy yet. He's not in congestive heart failure, in other words. But, he has heart disease. Or a heart defect. Whatever you want to call it. His heart muscle is damaged permantently, and won't ever recover again. No medication nor surgery can fix this.
• His blood tests have been abnormal twice in a row, 2 months apart. No changes or improvements. His Leukocytes, neutrofils and if I've heard correctly, lymphocytes are all abnormally low. And his transferine is too high. The cardiologist doesn't want to elaborate much on this, or she doesn't know what it all means, and has referred us back to the pead for end of January.
• His lung x-ray still bothers her. She's not happy with it showing something twice in a row either, without it being clear what's wrong.  The radiologists said it's either infective, or cardio-vascular in origin. Infective would mean swollen lymphnodes in the lungs, and the cardiologist can't find any on the echo (sonar). And to rule out cardio-vascular we would have to take Monkeyman for a scan (probably MRI), but she's not ready to put him through that trauma yet. So we're repeating the x-ray in January and take it from there.
• She still believes everything is due to an underlying mitochondrial disease. That it causes the tiredness, caused the damage to the heart wall, etc.

So the plan of action is repeat the x-ray in mid January after the school holidays. Then see the cardiologist for a last, wrap-up visit. Then we'd go see the mitochondrial specialist she's referring us to. She'll give us a reference letter with our next visit. And we'll see the pead, maybe also repeating the bloodtests. And, if the cardiologist feels it necessary, we'll look at doing an MRI around February. Thereafter, we'd only need to see her yearly, to keep an eye on Monkeyman's cardiomyopathy. Currently, he's stable. This can change at any time in the future. It's difficult to wrap my mind around suddenly being the mom to a heart-defect child. He's not allowed to play rugby, hockey, run long distance, climb mountains, etc. No high impact or extreme sports.

There's some updates I need to do on Boeboe as well. But I'd get to that later on in the holiday. For now, the most important thing, is that she passed!!! Boeboe passed grade 4!! We're so, so very happy and relieved and ecstatic. So for now, we're keeping her in mainstream, hoping and praying that with the same hard work, dedication and help from the teachers, we can pull her through grade 5 as well next year.

So, we're enjoying the summer holidays. Yesterday, we took the 3 eldest kids to their grandparents for a week of fun, swimming and being spoilt rotten with treats and dedicated time! I'm so happy for their sake that they get to have these holidays with the grandparents. I never had that, but I can see how much it means to each one of them. We don't like not seeing them for a whole week, not at all. The house is quiet, empty, too neat. Poor Peanut is really missing them as well. She loves talking to them on the phone though! I'm trying to spend more time with her, and also trying to organise the kids rooms. It helps, keeping busy. I can't dwell on things too much, not yet.

My unlucky daughter

I don't really believe in luck. Or that everything is coincidence. But gosh man, this daughter of mine must be one of the unluckiest people ever!! Can you believe this...

She had ANOTHER spider bite!!

In less than a year, 2 spider bites. I know we live in a wild country with pretty amazing (read awful) bugs, some very poisonous, but most people live all their lives here without ever being bitten by one. Like me, so far.

This poor child. She looked forward to her merit outing at school so much. All the "good" kids that wasn't naughty throughout the year, were taken to this resort for some fun in the sun. I'm sure most of you are wondering, how can a child that's oppositional, defiant, throwing tantrums, trouble controlling frustration and anger, etc., like Boeboe, be one of the rewarded kids. Well, that's the irony of Boeboe. Whenever she doesn't feel completely safe, she won't show her normal character. The one teacher described her as "stoic", and that was a perfect description of her for me. She has about 4 "stages". Firstly, there's the stranger stage. When she's amongst people she doesn't know, or doesn't know well, or doesn't trust enough. Like other kids in the class, teachers, etc. She'll be painfully shy, she won't show any emotion, she won't smile, laugh, talk, react, nothing. She'll listen, she'll look, and she'll do the absolute necessary like doing her schoolwork. Then there's the 2nd stage, which is preserved for small groups of close friends and family. She'll still be very shy and quiet. She'll still not be as happy and dancing and being as loud and talkative as she usually are.

The third stage is reserved for those she loves and trust implicitly, but whose opinion still matters more to her than her being herself. Does this make sense? The only people belonging in this stage, are her grandparents whom she sees regularly. Usually, they sleep over or go on holiday with us, which makes it impossible for Boeboe to completely hide her true self for days on end. So she's opened up in front of them, and hats off to them - they stayed loving and accepting and supporting. Which sets her more at ease, leading to this point where a special stage was created just for them. Other people will come and go in this stage, depending on how much time we spend with them. Like some family we see regularly. But it's usually reserved for the grandparents.

The last stage is of course, being at home with her own family. Her brothers, sister and parents. Here, she can be completely at ease. Completely herself. She can throw tantrums in absolute abandonment. She can scream and rant and get all the frustrations and anger out of her. She can talk about the paranoia, the grandiose feelings, the horrors of her life. She can giggle like a 5-year old and not feel judged. She can jump up and down in true joy and not have a care in the world that someone's watching. She can babble to her heart's contend and laugh when we tell her to be quiet for just 1 minute so that we can get a word in! Such a joy to have at home, pity she can't show that side of her to others.

Thus, in school, she's stoic, emotionless, and the pefectly good kid. The type of child every teacher want in their class. The reason why she completely dissappeared from the teachers' radars. Why her Afrikaans teacher didn't even notice her failing. Why her math teacher didn't realise she doesn't understand, isn't taking anything in, and was under severe pressure.

So as a good, quiet, non-disrupting kid in class, she was invited to the merit-reward outing. And somewhere there, she stepped on or close to a spider, and it bit her in the corner of the nail of her pinky toe. How unlucky can she be!! Fortunately, she complained about extreme pain so much that in the end I realised it wasn't nothing, and gave her an anti-inflammatory which helped a lot. Unfortunately, I only realised we're dealing with something more than just a bumped or "winter" toe by 8pm. She must've been bitten by 11am. By 2pm I had a look (after fetching all the kids from school and giving them lunch) and the toe was slightly red and a tiny little bit of goo in the corner of the nail. By 8pm, there was a small yellow fluid-filled blister. She convinced me that her toe was already hurt the evening before, so I calculated that timewise we've had this for 24hrs, so I thought it okay to wait another 12. She was already in pj's, in bed and sure about her timing.

Afterwards I realised she must've been wrong, and it must've been a spider bite that happened about 11am at the outing at the resort (that's about when the pain started). I should've taken her to the dr that first night. I just put bactroban (antibacterial cream) on, which took care of the angry red look fortunately. And gave more anti-inflammatories.

By next morning, it looked awful. Bigger blister, very swollen. Skin very tight. The dr said it was either a bug that sprayed her with chemicals, causing a chemical burn, or a spider bite. The blister continued to grow in size and spread lower down on the toe for 5 days, so I'm pretty sure it must've been a spider. A burn doesn't spread over 5 days, does it?!

Fortunately, the antibiotics, steroids, steroid-anti-bacterial cream, and anti-inflammatories that was prescribed seemed to have (almost) healed it by now (day 6). She's doing well, and is on the mend. Thank God. She was in so much pain, poor poppit.

And of course, we were on our way to leave on holiday! Fortunately we only went outside the city, not far to drive, so going to the dr didn't held us up too long. We had such a great holiday. Short, but fantastic. We all needed to go away, spend time with family, relax, and forget about the stress of the past months.

Tomorrow, school closes formally. I'm just taking the kids for 5 minutes to pick up report cards. Wish us luck! I'm stressed about Boeboe's! I do think she passed, but still.

On Thursday, we have Monkeyman's cardiologist follow-up. Please pray that his cardiomyopathy have cleared. Please, please, please let it be gone. We've done his blood test last week. He's such a brave little soul. He walked to the chair, sat down, stuck his arm out for them and didn't even make a sound all through it. So different from Boeboe's earlier the morning.

The pead herself drew Boeboe's blood. Like I knew would happen, she was all brave until she had to sit down. She started screaming, pushing our hands away, trying to get away. Thankfully, my husband went along and held her tightly on his lap while I held her arm down. She still screamed, but understood that if she moves that arm, it'll be much, much worse. I told the pead, like the opthalmologist a week earlier, that she's on the emotional level of a 6-7 year old accordingly to her psychologist, and it changed their approach to her immediately. Which worked like an absolute charm. Because their approach of "you're 10, don't be so silly" made her even more oppositional. The moment they lowered their voice, slowed their approach, lessened their expectations, and explained what was expected of her and why, she immediately calmed down and tried her best. Still screaming, still swiping their hands away, but at least she tried. She was less forceful in her behaviour. This made me very thoughtful. How quickly she responded to the drs when they spoke to her like a 6-year old. It saddened me tremendously for various reasons. But, I was also grateful. For them, for the knowledge we had, for the help it provided her.

And her meds are working well! She herself has noticed the change within 24 hrs. It makes her calmer, less angry and less depressed. So far, she loves it! I'm cautiously optimistic, though we're still only on half a dose. But I've definitely noticed a marked difference in her behaviour. I'm not 100% sure though that I like it. I loved my fiesty, over-excited, bouncing, laughing, over-emotional little girl. We've gotten to know her, live with her, for 10 years like this. The pills seems to calm her, but that also made her more introverted. More reflective. More introspective. It's difficult to describe. But it's as if she's showing signs of those stage 2 and 3 of her, within the family unit, instead of stage 4. It's sad, in a way. But, if this will make her happier within herself, let her be who she wants and needs to be, then I'm happy for her. It just seems like it depresses all her emotions, not just the "bad" ones. It seems a bit sad to me. But I guess it's precisely what the meds does, and if that means that she's more level, I can understand her being happy about it. I just miss my overly-excited, all-over-the-place little girl. It certainly hasn't repressed her self-pitying thoughts, hahahaha. She still felt sooooo sorry for herself, being the one to have a 2nd spider bite!!

Part of the end-of-year activities, is always the concerts. Monkeyman had his, and it was awesome! He has grown so much, emotionally, the past year. Last year, we didn't even attend, and he had absolutely no desire to ever participate in something social like that! This year, he not only participated, he did fantastic! We had one wobbly, when he saw the way the kids' faces were painted, he dug his heels in and refused to look like that. But his father was able to coach him into letting the assistant paint his face and then he had a ball. So much so, that he was saddened to think that he won't have another concert with his beloved teachers ever again. Since he's moving school now. He's starting grade R next year at his siblings primary school. I think that's about the equivalent of Kindergarten in some other countries. Sniff sniff. My baby boy is growing up.

Here's some photo's of Boeboe's spider bite, the concert and the kids.

Isn't she the most adorable little fairy? I bought the dress for her
christening (didn't use the wings, of course) and then decided
to have her wear it for Monkeyman's concert.

 

He was a little cat, and had so much fun!

Me and my youngest 2

 

My 4 beautiful children

Our little kitty cat, he loved his tail!!

What a beautiful little boy we got. So precious.

And another beautiful boy. Our eldest. Soon, he'll be a teenager!

Isn't she just too cute for words? Love her to bits!!

Two mischievous little monkeys. :-) To me, they look the
most like each other.

 

Spider Bite. This is on day 3 or 4, if I remember correctly. It started
off with a blister about 3mm x 3mm on day 1, which grew over
the days, despite the antibiotics and cortisone. I was quite worried!

 

Taken from the underside. It clearly shows the translucency of
the fluid filled blister. Isn't the body's defense mechanism amazing?

Excuse the dirty foot! She quite refused to put it in the bath,
until the pain was almost gone. And by then didn't really want
a washcloth close to it. I didn't want her to break the skin of the
blister, so I didn't argue too much. And this was taken end of the
day, which added to the dirt. The white spot is some cortisone cream.

A close up. This was taken on day 6. The colouring had me
worried a bit, but I hoped that it was just due to her
not washing it properly for almost a week.

Today - Day 7. You can see how wrinkly the blister's skin is.
I believe that's a good sign? The pain is gone now, as is the
swelling.

Didn't want to end the post with such awful photo's! So here's
a beautiful pic of the 2 sisters.