Mumps and birthdays

Yes, another illness. I looked at my past sms's to Monkeyman's teacher and noticed that in April, I let her know that Monkeyman will miss school because he had a bad cold. During May, I sms'ed because he had a stomach bug. In June, it was the flu. And now, in July, he has mumps!! With the flu, holidays and mumps, he hasn't attended school in 6 weeks now. I guess our son is much more ill than we realised. :-( That makes me sad. It's okay for now, he's only in grade R (kindergarten), but what if this continues to grade 4 and it's exam time? Or grade 8 in highschool? Can one overcome low lymphocytes? There's so little information out there on this. I feel lost. I guess it's time we go see the pead again, and ask her about all of this. What can we do about the lymphocytes, to help boost his immunity?

Fortunately, though he falls ill regularly, he doesn't always get severly ill. Same with the mumps now. He was increasingly mizerable over the time span of 2 or 3 days, but nothing I could put my finger on. He was just crying for no reason biggering with his sibs, or when we played a game and he didn't win, he would cry, etc. I told my husband that maybe the tiredness is making a comeback (it has been going so well during the holidays on that front). I mentioned it on the Thursday night, and by Friday morning when Monkeyman woke up, he looked like Alvin the Chipmunk! Both cheeks very swollen. Once the swelling went down, he started to complain that everything he eats hurts his tongue, as it tastes sour. The only thing he can tolerate, is cereal with milk. He's on the road to recovery though. He can actually return to school, but we're being cautious and keeping him the whole week at home.

Here's some pics. The first one was taken about a month ago, so this is just for comparison on how he usually looks, ese you might think he's just a bit overweight. ;-)

Peanut was eating a cheese curl. :-) And Monkeyman was healthy.
Look at the way his chin points and how his lower jaw looks normally.

And here's our chipmunk!! As you can see, the right hand side
got the biggest, though both sides were swollen.
Look at the double chin!! Hahaha.

 

He had a bit of trouble trying to smile with those tightly swollen
cheeks, poor boy. He was a good sport about the way he
looked, once I assured him its temporary and
won't get much worse.

 

Here's the left hand side, much less swollen than the right.
You can also see the little blue vein from the corner of his
mouth down his chin and neck. The one I'm always
complaining about, that goes dark blue when he's
tired or complaining about his heart. Here, in this pic,
it's quite light, about as light as it can go.
Since its appearance a year ago, it has never again
completely dissapeared.
 

During this time, we celebrated our baby's 2nd birthday!! Can't believe how time has flown. Last year after her birthday, I was very sad. The day wasn't what I wanted, I didn't celebrate like I wanted to, and seeing her open her gifts just made me cry with sadness. So this time, I made sure that we celebrated the day as I wanted to. It was perfect!! She was happy, and enjoyed every minute. They say, for every year of a child's age, there should be 1 friend. So for a 3-year old, you should invite 3 friends. For a 6 year old, 6 friends. So for my Peanut, we should only have had 2 friends, and she already has 3 siblings plus her parents! Thus, more than enough for a little party. We all slept late, then gave her her prezzies from every one. She had an absolute ball opening it up and then helping dad to put the big gift together. Well, the siblings enjoyed that part even more than she did, LOL. Thereafter they just played with the gifts until lunch. After lunch I baked her a cake, and then I marked it off in 4 quarters. Each child got to decorate his quarter completely as he saw fit. It was a big mess, but they all loved it! Then we sang to her, and she was in 7th heaven blowing out her 2 little candles. Early evening we made a christmas bed, got take aways and watched a children's animated movie together as a family. Peanut fell asleep towards the end. It was the perfect, perfect day, and presicely what I wanted for her first birthday. Just us as a little family, celebrating our beloved baby's birthday together, as a loving unit. This time, I wasn't sad or depressed. I enjoyed her birthday so much and seeing her open presents.

Our serious little thing, she loved opening it all. Excuse the wrapping
of the big gift. We just didn't feel like wasting such a big piece
of wrapping when she had absolutely no idea what is wrapping
paper and what is newspaper! ;-)

Playing with the little kitchen stand we got her. She's absolutely
crazy about it. And I was so happy when I got it in the shop.
I really wanted one that had more than "just" an oven and stove
top. This one has a sink, a fridge, a cooker overhead with
accesories, 2 separate oven doors and the stove top. Plus
some shelves, and knobs with electronic sounds.

It's just her size. In time, when she gets taller, we can lift it a
bit. But for now, it's perfect. Even the others enjoys the kitchen.

Here's the cake divided in 4 squares! Hehehehe. So cute.
The top left corner was Monkeyman's creation, the top
right was Peanut. The bottom left was Mr N, who has
loads of food issues, one of it being that there shouldn't
be too much "things" on his cake, or he won't eat it. And
then lastly of course, is Boeboe. Overkill, hahaha.

Me with my beautiful babygirl, blowing out her 2 candles.

My four beautiful children.
All of them got a haircut in preparation for school starting again.

 

 

Sleep study results

Just a quick update... it's school holidays as I mentioned, and we're now in our third and last week. I'm spending all my time with the children, and some on myself. Once school starts again, I'll spend more time on this blog and get into Medical Mondays and so forth.

So just quickly. The sleep study report came back. Apparently, there's some snoring, but not enough to matter. Nothing to worry about. So basically, the sleep study was normal!! Yay, yay, yay!!!!!!

I can't help having ambivalent feelings though. On the one side, I'm absolutely thrilled. Because my husband was really worried that Monkeyman would need to sleep with the same CPAP machine he has to, at night. It's a HUGE relief to him (and me!) that that's not necessary. Thank God.

On the other hand... if he had sleep apnea, it could've explained the tiredness, and I could live with that, my child having sleep apnea that needs treatment. I don't know what we will find at the end of the road, but if it's an incurable, degenarative mitochondrial disease, I'd much rather have chosen the CPAP machine. But, I'm not really going to go there yet. Or entertain the thought for more than a fleeting moment. And no, I have not yet, research mitochondrial diseases. ;-)

I'm in such a good place at the moment. I never realised how much one part of my life has dragged me down the past year. It caused me alot of pain and sadness. I only realised how much, when for the past almost 3 months I stopped my interaction with the people involved. Every time I interacted with them, I would become just a little bit more depressed about the hurt I carried with me. At some point in April this year I realised what it's doing to me, and I stepped away. It was difficult and sad. But I felt free! I missed those I loved, but I needed to be able to find myself again. Who I am, and not who I was percieved to be. In the meantime, I've become part of a smaller group now, which is turning out to be absolutely lovely and exactly what I needed to become whole again.

I'm thus really happy and doing well. :-) The first time in a whole year since Monkeyman was diagnosed with pulmonary hypertension. The holiday has, obviously, also ALOT to do with my state of mind. We're having such a wonderful, blissful time. I've bonded with the kids so much. We've all relaxed, thrown our stresses off and just had fun. We've played soooo many games with them. We talk, we laugh, we play, and we all relax together. Watching movies, playing games on the tablets, etc.

It's also going well with the kids. Boeboe has had a few ups and downs, but mostly she does really well on the higher dossage of the Risperlet. It does tire her out a little more though. Mr N seems to have reached a little more maturity after the difficult 6 months he has had. It seemed to have been a good learning school for him. Not nice for a mom (or dad!) to go through, but the end result turned out to be good. Maybe I'll get into what transpired in another post on another day. It's still an ongoing story though, so maybe I'll wait for some conclusions that will hopefully happen in the 3rd term (it's all school related).

Monkeyman is doing so well, that if I didn't know better, I would've said there's absolutely NOTHING wrong with him!! The other side of the coin of course, is that we can clearly see the way he should be, and the way he usually is. He didn't go to school for 2 weeks when he had the flu, since the dr advised us to keep him home. Then, we've now been on holiday for more almost 3 weeks. So for more than a month, he has done nothing but rest, be at home, sleep late, watched some movies and tv, play when he wants to, etc. Which left him with more energy I have ever seen in him! He looks so good. His paleness is mostly gone, the circles under his eyes, the pained, closed off, strained expression on his face, all of it is gone. He laughs and jokes and plays and jumps and is just a normal energetic 6-year old. He doesn't sigh all the time anymore, and when he speaks, he has that lilt in his voice that signals happiness!! No flat tones or audible tiredness in his voice. And all of this, without us even giving him the vitathion!! I do give him a bit of energade on most days, but even on the days I don't, he seems mostly ok. He still does have the blue vein on the side of his mouth, and it does turn darker blue at times. But mostly, it's light! We're also eating well. I prepare good meals because I have time. I also try to concentrate on adding more protein, since the dr asked me to. I don't know if this made a difference? Maybe there's a combination of things working together. We'll see. Once school starts again, I'm going to keep a VERY close eye on him, to see if he can keep this up. Fingers crossed!! Who knows, I can still hope, can't I?

With Peanut it's also going well. Very well. She's absolutely amazing in the talking department. She says 3 and even 4 word sentences!! She even says a few words and sentences in English (her 2nd language). She has an amazing understanding of what we say to her. She's a very sweet, very good-natured little girl. Though, she's also strong and knows what she likes and what not! And she'll make sure everyone knows it too, by letting out a piercing scream. Either in protest, or in glee. :-) She's really such a delight. Can't believe she's turning 2 soon!

Holidays!!!

Though it's the middle of winter in our country, we too have a June/July holiday. Here we close for 3 weeks during mid-year. It's perfect! Where I live (in the Northern parts of our country), the days are mostly mild, sunny, and actually perfect in winter. Not too cold as long as you have a jacket on, and there's a serene quietness outside that recharges your soul. I hate winter, but I love the weather during winter where I live. So we spend alot of time outside in the winter. The kids plays for hours on end, and we sit in the sun, eat outside, braai (barbeque), colour in or play ball games.

So our days have just flown one into another. Quiet, happy, beautiful. I've had loads of time to contemplate my life and the past year, and like I told a friend last week... I realise that I lost myself. The day the cardiologist told us that our little Monkeyman had a severe, life-threatening lung-heart disease, my life came to a screeching halt. People has asked me so many, many times "how do/did you cope". I can now honestly say that I didn't. I'm not the wonder woman or supermom some thought I were. I didn't try to be. I fell apart. Totally and completely. I lost myself, and I lost perspective. I went into high adrenaline, superdrive, and I charged like a bull towards my target with absolutely no regard for anything or anyone, except getting my child healthy again. The only way I knew how, was to research, join groups, download medical papers on his condition and read as many blogs of moms going through the same as I could find.

This of course, lead me to make friends with a number of mommies whose going through much, much worse than we had to. Mommies that had to watch their children deteriorate to the point where every breath they take, is painful and inadequate. Mommies that had to make the torturous decision to either let their child go, or put them through a double heart-lung transplant and maybe get another couple of struggling years with their child. Some mommies didn't have that choice, and had to say goodbye. Sometimes without warning, sometimes knowing that they're spending their last precious hours, days or weeks with their irriplaceable, very much loved child.

This changed me. It threw me. I lost it. I didn't/couldn't cope. Facing that with my son, my 5-year old little monkey... I couldn't so I lost it. Totally. I went off the rails and I lost perspective. I couldn't see facts from fear. It infiltrated my every thought. All day, every day, for a year. I couldn't have a conversation without thinking about Monkeyman all the time. I couldn't empathise with other moms, because all I would think was "my son may be dying". I couldn't socialise normally, so I withdrew from friends and family. I couldn't look in my other children's eyes and admit that there's something very wrong with their sibling.

When Monkeyman was cleared from the pulmonary hypertension threat in August last year, it took time for his enlarged heart and arteries to shrink. So it wasn't like we could take a deep breath and sleep soundly again immediately. And by the time that happened, he was diagnosed with a thinned heart wall, abnormal blood tests and "something up in his lungs", plus the vague possibility of a mitochondrial illness. So we went from fearing about one thing to fearing other diseases. No parent should have to face that in their child. The ups and downs of the past year... it threw me.

I'm not 100% back to who I was. I'm not sure I'll ever be able to. There's been many defining moments in my life as a mother, and everyone of them changed me permanently. The day we were told our son has epilepsy and needs a brain scan to see if there's a cause (like a tumour). The day we were told our daughter's back operation was invain (disproven 2 days later, but still). The day we were told Monkeyman has something really wrong with him, called pulmonary hypertension. The day the psychiatrist said she believes our daughter has VCFS. The day I looked at my 2 month old's grey face when she stopped breathing. There's been many moments like these that has changed me. The past year, there's been too many of them, and I fell apart.

I tried to keep it together. I grabbed at everything I could to hang onto. I have obsessions. I never realised it as clearly as I can see it now. But that's why I am so exceptionally good at researching. If I'm interested, I can gather an immense amount of facts, and I can easily remember almost all of it. It has helped me when my daughter needed it with the occult tethered cord diagnosis. I thought, no, I believed that my son deserved the same. I couldn't do any less for my son, than what I did for my daughter. So I researched. This time though, it didn't involved my daughter's continence, it involved my son's life. And that made me stumble. I lost perspective, and I lost my positive, happy disposition.

This past week, I've found myself again. I'm happy again! I'm confident again. I'm at peace. I believe that we're taking steps in the right direction, and I believe the road we're walking with my son will end soon, and it will have a good ending. I'm not desperate anymore. Believing that if I don't research, don't gather the facts, don't read everything, I'm gonna fail my son and he's gonna die.

I'm not in that place anymore. Due to a number of factors that happened at the same time, I was pulled out of there. And I'm doing well now. I'm happy, I have hope, I have peace, and I can see the road ahead again!! I'm not in the deep dark pit anymore. And I'm so grateful. I'm still going to fight for my boy. I'll fight tooth and nails for him. But I'm realising now that obsessing about it (like only Aspergers' people really can!) isn't the answer. Excluding life while obsessing isn't the answer. I need to still be me, be a mom to the other kids, be a wife, be the happy, positive person I've always been. I couldn't live in that negativity any longer. So I stopped my obsessions. Like researching. Not completely, but almost. For example, instead of researching about 3-5 hours per day, I've researched 30 minutes the past week. :-) To me, this is amazing improvement, and not something I thought I could do. But I did it, and I'm proud of myself.

So back to practicalities. Monkeyman had his sleep study!! And it went soooo well. He went with his dad happily enough, even excited. It really helped being able to explain to him that they're going to check if he has the same problem as what Daddy has, which makes Daddy needing to sleep with the CPAP machine and mask at night. They got a private room in the hospital, sharing a double bed. The wires were all connected to a portable computer that Monkeyman had to wear on his body. So he was mobile, able to go to the bathroom and have a good night's sleep. He loved the food they got, and spending time with his dad. They were told the results would take a week to be processed, so we're waiting for his doctor's call by next week. Early the next morning they were discharged and came home all excited to tell his siblings about everything. He said he missed me, but my whatsapp message meant alot to him. Thank goodness we got my phone working again just before they went to bed. It was quite an ordeal!

Some vandals sabotaged our electrical substation close to where we live. This caused a power outage for 3 full days! Happened from early Sunday morning until Wednesday night. The sleep study was on Monday afternoon. That morning, we realised that it's gonna be a loooong time without power, so my husband fixed our small generator to power a small freezer. And recharged my phone! It ended up being quite fun, having no power for 3 days. For three days, we didn't go on the internet. We didn't play online games. We didn't chat with any virtual friends. We didn't spend hours on our tablets or computers. We played games with the kids for hours on end. Ball games, card games, creative projects, board games, it was so much fun. We cooked kettles on our gasbraai for our baths, and for coffee. At night we braaied (barbequed) some of the meat that would've gone off and ate like kings. We put on little lanterns and loads of candles, and had little concerts with the kids at night. We ate chocolate and played Uno by torchlight. The kids were exceptionally good and helpful, and Mr N even helped his dad fixed the generator. When the lights went on on the Wednesday night, we were caught by surprise. It was almost as if we were all reluctant going back to our busy lives. It was a really good 3 days, and one of the reasons why I'm so happy and at peace currently. The holidays are really great. There's still 2 weeks left, and I intend to enjoy every minute of it!