Sunday, 29 September 2013

Praticing the Art of Letting Go

So I think, I think I've got B all cleaned out and ready to start anew.  The avocado oil (the grandiose idea) backed him up horribly, awfully, terrifyingly.  How, how, how does an oil supplement constipate a child?  I really don't know, it is Mr.B after all.

The sad part is that it took me a few days to catch on and by that point he was a goner, past the point of painlessly reversing it.  I had to watch my poor boy writhe in pain trying to pass 'clay' while (not so) patiently waiting for the PEG3350 (stool softener etc) to work through his system.

I was SO excited!  I was feeling SO pumped that maybe B could take some real food...Now?  Just feeling a wee bit deflated.  Certainly not defeated, but yes, deflated.

So we'll start again, we'll start anew.  This whole process of elimination stuff SUCKS.

Goofy Gus!  How I found him after his nap!

After some more careful research I am going to go with Coconut oil (which was what I was going to do originally!).  My hesitation with coconut oil was simply that it thickens when it is at room temp and if B had a mic key g-tube (removable tubing) I wouldn't have hesitated but now that he's got the PEG (permanent tube out of his stomach) it's different.  If his PEG tube gets clogged we're screwed, no food in, no air out.  As I said, I did a lot more research and got some great testimonials from other Mommas that have gone this route so I'm going to do it...I'm jumping back in, going with the original plan.

It is amazing how your perspective can change once you get a bit more experience behind you.  A year ago, when we were approaching B's first birthday I was so desperately hoping that he'd be able to try a bite of his birthday cake.  Now, when his second birthday is a mere month away I will be happy if he tries cake for the first time at his fifth birthday!

I heard so often in the first year how important it was to get him to start 'tastes' as soon as possible and how it was even more important to continue to persevere.  All good advice mind you and important but...there is always a but my friends.  If it gets to the point where the child is feeling pressure and stress, and the parent is feeling pressure and stress...there is just no possible outcome that is going to be good or pleasurable.  Again after looking back, (and talking to countless people that their kids started eating at 5, 6, 12, etc. and are doing great) I wonder why I succumbed to the need to 'do' things how I was 'told'. 

Parenting is all about gut feelings, it has to be.  There is no 'guide to parenting' that makes sense for all kids.  You can read as many books as you'd like (and judge all other parents on how they do things) but nothing, and I mean nothing will prepare you for parenthood. 

Now take into account all those books that get read and all those 'birth plans' that get written (didn't I have my head in the clouds!)...and you have a child with special needs that no one, even the doctors can understand.  There is no book of B (well this blog I guess is a start), it is all about my gut.  How many of us have said, "damn, I should have listened to my gut!" on more than one occasion?

What my gut is telling me now with B is that I am feeling like we are missing something (well lots of things but we have to start somewhere).  There is something more going on with B's digestive system, there has to be.  The question is whether or not it is in fact his gut or could it possibly even be his brain. 

I had a long chat with Dr.Cassie earlier in the week about my concerns and she was concerned when she saw how thin he still is.  I asked if it was possible that maybe he'd had another stroke, small enough that there wasn't huge signs but that it's affected his ability to digest and move food.  She didn't think it would be a stroke but we did do head measurements to see if his head has swelled at all.  His head circumference really hasn't changed (which is a good sign being as he's got extra fluid on his brain) so she was feeling confident that it wouldn't be a brain tumour (these are scenarios that go through my head at 3am, it's another thing to hear them voiced out loud).  She contacted Dr.V (at ACH) and they chatted about what the next steps should be.  I was waiting with baited breath about what they both thought we should do and the decision was made to...wait.  I hate that sentence, "I think we should just wait and see".  The problem is that his GI Dr is off work until mid October and really she needs to weigh in on all of this, it really is her area.  Am I in a panic that something needs to be done?  No.  But am I looking at this more and more that there is something else, something new?  Yes.

Torin making B his formula...such great boys I have!
For the time being I'm just trying my darndest to get this kid to gain some weight.  I think (shh, not too loud) that he's on the road to gaining again.  The avocado oil might have made him miserable but it did at least put some weight on him!  He is still on the move any chance he gets (even if it means dragging his head when he's tired) so it's hard to keep the calories going in.  Justine is challenging him to 'sit' more and more and we are all doing bits of 'standing' with him.  He gets right annoyed with us but I can also see he's getting so much stronger.

We also had a hearing appointment this week with the lovely Beatrice (Audiologist) and I felt badly for her since B was acting like he was being tortured.  Don't get me wrong, it stresses me out when B is so miserable with everything 'hospital' but it is also hard on the staff who love him.  We did successfully do a bit of testing (he's still testing the same, moderate loss on both sides) and we did manage to get new ear molds taken.  It is funny how one week his hearing aides fit and the next they fall ears really have 'growth spurts' too?

I should have known that music class was going to be a bit of a stretch after the hearing appointment but we still persevered.  He clung to me pretty much most of the class, whining and yet he watched Sarah (music therapist) out the corner of his eye the whole time.  He did touch the 'rain' drum with one wee finger at one point!  Such a nut!  It wasn't  until the last song, at the end of the hour, that he let me turn him around.  When we were done I put him down on the ground and he squealed with glee and took off.  Everyone else was stunned that he was able to be on the move!  He was back to happy, laughing B since he was free to explore.

Funny faces with Justine
We had started our week with Rylan home with strep throat and ended the week with me sick with a head cold.  I started feeling rotten mid week and I just kept telling myself it was allergies (we've had to start the furnace this week, boo).  I just kept taking my homeopathic remedies and hoped for the best but I woke up Thursday feeling hit by a truck.  I wasn't feeling much better by Friday and the big boys only had a half day of school.  Justine (B's aide), bless her heart offered to take the big boys to her house for an afternoon adventure.  Justine has her own special needs sibling, Rachel, whom the boys are quite enamoured with.  I love their curiosity and their honesty.  These are kids that are going to be raised with thinking that people are 'different' if they don't love someone with special needs!

When I got back from picking the boys up from school Justine asked if I would be okay with her taking all three boys with her so I could rest.  Rest?  Alone in the house with no kids?  I mean alone??   Ready for it...I said YES (aren't you all proud of me?).  Was a nervous, oh hell yes.   Did I feel guilty, um, have we met?  But I still agreed and I still went through with it.  I was only mildly panicked as she drove my van away with my three precious cargo onboard.  As it turns out they all had a blast and I got to meet Rachel (and Chad who is here from Texas) when they came to drop off the kids.

I have no doubt about people coming into your life when you need them.  Justine came to us via Heidi (who you'll remember was with us for the summer).  Heidi has worked with Rachel (Justine's sister, are you following this?) for 6 yrs now so when she (Heidi) got a different job offer through the university she asked Justine if she'd be interested in working with B.  The interesting part (I'll wait if you're still trying to piece them together) is that Braeden has many similarities to Rachel.  Granted Rachel is now 21 but her beginning was much like B's is now.  Rachel has a difference in her 2nd Chromosome (it's not typed as a 'syndrome' because kids with the 2nd chromosome issues all present somewhat differently).  I looked up what that means (it's a long description, I'd have to get Justine to explain it), and the commonalities between B and the 'explanation' are certainly there.  Who knows!  I honestly have no idea of what the geneticists haven't looked at anymore since his DNA has been thoroughly looked at. 

Long story short, I am still in the learning curve of 'letting go'.  I have been so blessed with the help that has come to us via B.  When Ashley came to us I was able to finally begin my journey of letting go some of my stress and responsibility to B (when at home).  I was able to comfortably nap for the first time in a year and a half, knowing he was going to be okay (and if not she'd come get me in a hurry).  We then moved through Heidi and now onto Justine.  All three wonderful women, all very different, but all awesome with B (and the big boys too).  Bit by bit, little by little I'm trying to forgo some of my control.  I won't lie, it is hard.  I'm still going to feel guilt when I take the time to nap (even though I was up with B all night the night before).  Going back again to a year ago when I didn't feel as though I could or would want to leave his side, there is growth, for both of us.

Over and over again I hear that "you need to take care of yourself", and I know that it is true but it certainly doesn't come with a cost in and of itself.  Will there ever be balance in my life?  I don't really think so, not completely but then is there ever really?  The balance will shift as we sort through these murky waters of what is B and they'll shift back again when something new comes up. 

All in all at least now I'm starting to practice, after all practice makes perfect no?
My precious prince

From Our Home To Yours...


Rachel Brown said...

How gorgeous <3 Thank you for sharing :)

Lia said...

Thank you Rachel!