Smurfville under Construction

Four weeks ago, on the 6th September, Samuel acquired a lovely little niece named Mia.  (The fact that Luke thought 38 was as good an age as any to make me a grandmother *ouch* is a whole other blog on it's own).  I was quite eager to see how Sam would react to a real baby so close up, as he gets super excited when he spots other "babies" (which is roughly any child between 0months - 10years old for Sam).  With Mia still being so tiny and not providing Sam with much entertainment value, he seemed generally disinterested. And then, one afternoon, as we all climbed into the car, Mia cried.  And then Sam cried.  And then Sam screeched in sheer distress.  He was thoroughly and completey upset.  He's developed a tendency to start whimpering himself whenever he sees another baby/child crying on tv but has never quite become so upset.  If it wasn't so earth-shatteringly painful on the ears, it would've been kinda cute :)

Mia

So we've said our final goodbye's to 20 Hillary Street. The place I crashed every evening for 9 weeks after spending hours on end at the NICU when Sam was born.  The home that saw Sam cast his NG tube aside and finish his first bottle, that saw him sit and and crawl for the first time, where he recovered from his first four surgeries and in return was showered with litre upon litre of v-word secretions. Yuggghhhh! A house ain't a home till its received the eau de puke treatment, luckily Sam's already taken care of that in the new house.

 

Where Sam's passion for slides was born :)

Possibly the tallest tree in the neighbourhood. Stood more than 20 metres high and was easily visible way before we even neared our house, even for Sam. Proved invaluable on Sam's much-loved car trips as a marker that he could relax as we were near home.

We almost said our final goodbye's to the Ferocious Beast as well as the new owners surprised us (most pleasantly) by saying they'd be more than happy to have Max stay on with them. This was the plan up until last week and then the thought of having to leave him without even giving him a chance in the new place, somewhat tiny as it is, just seemed like giving up too quickly. So Max came across on Saturday and, although I am not sure how easily Max is adapting, Sam is loving having Max there to occasionally chat to through the gate while softly rubbing Max's fur.  Being the awesome people that they are, we've been assured that Max still has a home with the new owners if things don't work out here with him. 

So, since our dismal v-wording first attempt with Melatonin, we seem to have found a workable gameplan for Sam's sleeping for the time being, which is still all over the place.  There were two fantastic nights, one when Sam woke for the first time after 2am and the other after 5am, but the rest still filled with lots of disturbances and restlessness happening anything from every 2 hours to every 20 minutes.  The general pattern is that Sam falls asleep pretty much as (Sam's) normal.  But then within an hour the trouble starts either with him seeming to have an uncontrollably itchy skin mostly on his tummy, back and legs and/or rather violent twitches in his legs and very occasionally, in his arms.  The itchy skin is obviously because of his eczema but the twitchy legs is the tricky part. Even when Sam resorts to that horrid spinning, it starts with his legs and that's where the core of the spinning remains...with him rocking his body from side-to-side with his legs. After another trip to the doc, it has been agreed that Sam almost certainly has Restless Leg Syndrome I do vaguely remember this subject being discussed either on the RTS listserv or the FB group recently, indicating that there are other RTS sweeties struggling with RLS as well, sort of confirming the diagnosis.  Apparently RLS in adults is treated with the same medication as used by Parkinsons Disease sufferers but to Dr B's knowledge there's not much that can be done about paediatric RLS. Dr B also noted that on both Sam's scars from the TSC surgery and the removal of his right testicle, there's a section where the scar tissue has become tethered to the deep tissue underneath and thinks that these three issues, together with Sam's usual SPD challenges, are all contributing to his sleeplessness.  While there's unfortunately no remedy at this point for the RLS and problematic scars, we can at least treat the eczema with some Aterax for a while. A few nights ago I tried the Melatonin again and so far we've had no v-wording episodes and last night added the Aterax to the mix and, with the exception of waking twice for mere moments, Sam slept through till 7am this morning. Celebrations!!!  Of course the fact that I have just blogged about it will almost certainly guarantee that tonight will not be as successful *sigh*   On the upside, I don't think my body can handle that much sleep anymore...the day after Sam's straight sleep till 5am, I felt absolutely lame all over and really rather dopey...how I'd expect to feel after having had no sleep instead.  So it's really for my own good to have Sam slowly phase the good nights in, right? As long as I keep telling myself that, we'll be okay :-)