We are the Stow Family and this is our story. Our lives are blessed by Love, Joy and Hope. Follow our sometimes interesting stories on loving our two boys, exploring parenthood, and celebrating a little extra - two parents, two boys and an extra chromosome!

Saturday, March 26, 2011

Jumping for Joy?

I am sitting at my dining room table, it is very quiet and I can hear the crickets singing their melodic chorus outside in my garden. The boys are asleep (for now) and hubby is at the rugby, so I am enveloped in my own wondrous company!

Not that I think I'm wondrous or anything - just that I have always been a person who simply loves to be alone, to do my own thing, to read, ruminate, clean, totter around... Not easy with two little ones under 3 years! So, whenever this happens, which is about once a month, I just relish in my alone-ness. I let it wrap me up like a big fluffy just-washed blanket.

As always, life is busy - I actually wish I had another expression, because that one is getting really old now. Hmpf! But it is what it is! I am pleased to have a new client, and the prospects are very exciting! It does however mean more work at this point - but I am okay with that.

Harlan is growing bigger and more adventurous everyday, but he's still amazingly attached to me. He seems to get severe separation anxiety and isn't very social with other little ones - shame! I think he's actually a little wary of other kids because his big brother (*ahem*) is rather brutal with him.

I am amazed at Harlan's complete focus and determination to understand how things work, how they fit, how they stack, how they fall, how they taste, how they feel, and how they break... He can busy himself for ages on simply screwing the top on and off a bottle.

Malakai, on the other hand, is going through a phase where he wants tons of input. He wants to be shown, he wants to learn and he wants an adult to be by his side. But, he's doing so well as school - he actually doesn't want to come home when I collect him in the afternoon.

The other day when I collected him, he saw me coming and quickly scooted his butt onto the collective blanket where all his friends were sitting. I called 'Malakai!' and he looked the other way! It was so funny!

Otherwise, I am having such a pain of a time disciplining Mr M - still! I just don't know if anything is sinking in... His latest is to run past Harlan and grab some hair and carry on running! Seriously! I just don't know... And he knows he's being naughty.

Also, as Malakai gets older I see both his amazing strengths and I am starting to come face-to-face with his weaknesses. I cannot believe that Malakai can read, that he understands so many signs, that he's so darn clever! He really is an incredibly bright little boy.

On the other side of the coin, we're working on 'jumping' at physio at the moment, and I catch myself thinking how strange it is... we have to teach Malakai how to do something that his cousin (who is much younger than him) can do already with no problem. And he hates it too... Where most kids literally jump for joy. Ai ai ai... I am sometimes reminded that Malakai actually does have special needs - which brings me to the next thing.

The fact that I have to be reminded that my child has special needs is testament in itself of how this journey is just so beautiful, so fulfilling, so amazing. Yes, I sometimes want to cry because my son needs to be taught how to jump, but for the most part he's just my really amazing, very clever and incredibly loving son. I love that we we are blinded by Malakai's ABILITIES!

Finally, I have found a fantastic doctor. In South Africa we only have roughly 5 paediatric neurologists, and so the wait for an appointment can be between 10 - 12 months. Luckily I discovered a newly qualified PaedNeuro and had to only wait one week - ONE WEEK - for an appointment! That is really amazing!

Anyhoo - we had a one hour session and we covered everything from birth to current day. We spoke about Malakai's development including physical, emotional, sensory, behavioural - you name it, we covered it! She was so thorough! Then, I showed her Malakai's sleep video and I held my breath. I think I have just been told so many times that I'm losing the plot that I was afraid she'd think so too.

Thank heavens she agreed that Malakai was not behaving normally in his sleep! Yay! I am not mad!

So, we now have to wait for a sleep study (any tips from other moms would be awesome) and an EEG. Once again though, not many people who do this in South Africa, so I have no idea when we're going to get an appointment. The reason we're doing an EEG is because the doctor suspects (from watching the video) that Malakai might have nocturnal epilepsy. The EEG might confirm this or it might not even pick it up (as often happens, even when epilepsy is present). However, the sleep study should also narrow things down a bit for us!

I cannot express how relieved I am that we are finally taking action and might actually have a diagnosis for Malakai's sleep issues sometime soon. He is so amazing, so gorgeous and so beautiful - imagine what he's going to be like when he's actually getting a good night's sleep? Can anyone spell 'a.n.g.e.l.'?

Anyhoo - that's us for now. Back to some awesome 'me time'!

Tuesday, March 8, 2011

Its been so long...

I regret to acknowledge that I have totally neglected my blog these past weeks, and I am so terribly sorry. Not only have I now got a ton of things to say (which makes for very arduous reading), but I have also lost track of my favourite blogs - the reading of which brightens my days and gives me constant hope and reflection.

By way of an attempted apology, I'll use sub-headers in this post, so that you can just skip right past anything that doesn't tickle your fancy!

Work, work, work...
I have been working my proverbial backside to the proverbial grindstone... I have a new editor and she's getting things into the kind of shape she likes them to be, which means working very hard on two week deadlines (that usually take four weeks). This has been the biggest reason why I haven't had any time for anything but work, sleep and kiddies.

Sleep, or lack thereof
The second reason for my lack of time has to do with the fact that the boys are not just waking up at night - they're starting their antics as early as 8:30pm (and they go to sleep at 7:30pm...). Now any self-respecting mother and father will know that this scenario leaves you with... well... no time whatsoever to relax, catch up on emails, watch a movie, or just vegetate on the couch with a good book. It's all work, kiddies, work, kiddies and a few much needed hours of sleep here and there.

Sleep Training
Which brings me to sleep training... aaahhh...
I have admitted to anyone who will listen that I am completely and obviously useless when it comes to sorting out my children's sleep habits - so I've brought someone in. For roughly the price of a four-star hotel per night, she comes in and is sleep training Harlan for me.
So, I've had two good night's rest and Harlan is halfway towards sleeping through, bada-bing bada-boom!

Sleep Issues
Following Harlan, the sleep trainer will move onto Malakai the with singular focus of telling me what on earth is going on with him. I want an expert (and outsider's) opinion as to whether Malakai's sleep issues are behavioural or not. Which brings me to my next point...

Munchausen by proxy syndrome (MBPS)
A condition where mothers often 'create' illnesses for their children (either by pretending or actually harming them) in order to get attention. Not a nice thing, no. But I am at the point with our family doctor where I feel like I'm carrying a big board around my neck that says "Hey, my name is Loren and I have MBPS".
We've ruled out benign joint hypermobility syndrome, we've investigated restless leg syndrome and ruled out 2 of the 3 major causes (iron deficiency and thyroid disease). And now the third, and possibly most relevant cause for restless leg syndrome in terms of Malakai's Down syndrome is a dopamine deficiency (which has been proven in Ds).
But the doctor is just not willing to take the route of treating dopamine deficiency because of the kinds of medication used, although I have read that toddlers can be given the medication if the pros far outweigh the cons (i.e. constant lack of sleep affecting ability to learn, function etc).
And, when I ask him to check Malakai's dopamine levels he looks at me like I have MBPS. And, when I look at myself, I ask that question as well - am I taking this too far? Should I just accept that Malakai will not sleep?

Well that's it for now folks - life is busy and now that we are making progress (for which I promise not to take the credit) with sleep, things just look more manageable. Sleep is an amazing thing, and prolonged lack of it can seriously turn your life grey.

Here's to getting some sleep - for ALL of us!