Tuesday, 28 May 2013

Tying My Knot to Hang On

Night terrors, UGH about sums it up.   

What does this mean?  I'm certainly learning about them now that's for sure.  It's funny (not really) when I look back through the past few months of no sleep I actually think that the 'terrors' have been happening for longer than I realized.  When B has his worst nights he is generally waking every 20 mins or so and crying out in pain, he'll change position and settle back down only to wake 20 mins later.  There were many nights when I couldn't wake him completely (didn't know I wasn't supposed to), and could not get him to settle and would have to 'shock' him out of it by turning on the lights.  I realize now that he is in an in between state of sleep and waking here when this is happening.  From what I've read night terrors are supposed to last for 1-5 mins...B's are generally 20+ mins of thrashing, crying out and tossing around his crib.  If I do try to settle him he generally tries to thrust out of my arms but if I am to put him back down he'll scream out and cry...sigh, it's a little rough some nights, I'm not gonna lie.

Such a big boy!
Apparently, also from what I've read (thanks google), is that kids usually only have one episode not hours upon hours of them.  Gotta love our Mr.B, he truly is an overachiever!  The hope is that we can get in to see Dr. Mahan (sleep psychologist) again in June and maybe (fingers crossed) she can give me some answers.  The hope is too that we get into the sleep clinic sooner rather than later as I'm not too sure how much longer I can keep all this up!  The last two night have been brutal with B having short little 'sleeps' (5-10 mins) between the 'terrors' from 11 pm till 5:30 am this morning.  Add in the retching, issues with feeding and top it off with a six yr old home with a sore throat and I'm feeling a little overwhelmed today!  (All I can say is thank goodness for Skylanders because Momma isn't all that with it today!)

This isn't so bad!
We are still trying to figure out the issues with the retching and why it has increased so dramatically.  We go back to see Dr.Brindle on Thurs to get the full contrast study report and see what she thinks.  I had a 40 min conversation with his Dietician today as well and Kelly kept saying "well most kids..." and I just laugh, B is certainly NOT "most kids".  I am feeling a little dissuaded that we may not find an 'answer' to the retching and this might just be B.  Kelly and I talked about switching him back onto 5 feeds a day so that it won't take 2 1/2 hrs for one feed to run but then I lose out on what little sleep that I do get.  It's always a give and take, which I suppose is the way of life.  The other thought we struck upon is because of the constant teething and increased secretions with that, that they are not being swallowed past his fundo and triggering him to retch when they build up...who knows!
We are also still waiting to hear from GI to see if she wants to weigh in on this or not.

Enough with the negative, B is moving more and more and it is SO exciting to see!  He realized a few days ago that once he hits the hardwood floors he can really zip backwards.  You know initially when you hear the words 'Cerebral Palsy' you (well me) had visions of a child that most likely wouldn't crawl or over possibly walk.  This kid blows away any expectations (or lack thereof) that I might have had.  B is 'crawling' in his own Mr.B way and he is getting stronger.  I should know by now to never put any expectations on him, he's going to continue to teach me that I'm wrong more often than not!  We are certainly finding that we need to keep a closer eye on him now, he gets himself into all kinds of 'small' spaces.  He is certainly enjoying his mobility though, he tends to squeal away as he's moving as if to say "Ha! Look at me go!". 

Araya and Momma Kels
The other wonderful positive is that we all trooped up to see 'our' new baby, Araya this weekend.  It's so funny that my first thought was that she is SO tiny (she was 6.1 lbs at birth).  I can't even remember B being even smaller than that!  I guess because we really only saw his 'tiny' self for a few short days when his swelling from birth came down and before he went Septic (less then a week later) and swelled up to twice his weight again.  I think I only held him twice when he really was his itty bitty 4-5 lb self. 

Araya (of course) is very precious and sweet and the boys are all head over heels (including Michael I think!  By the look on Mike's face when he was holding her she's gonna have him wrapped around her finger no problem!).  Mr.B wasn't completely convinced since Momma was holding another baby but he'll adapt soon enough when we spend more time with Araya and her Momma Kelsey.

"When you get to the end of your rope, tie a knot and hang on!" -Franklin D. Roosevelt

From Our Home to Yours...


Anonymous said...

Hi Lia
I just want you to know that I continue to check in on your journey with Mr. B. I know that I can never understand the struggles you, Mr. B, and your family go through, but your perspective is so amazing. As an OT I work with many families living through some of these similar struggles and I appreciate being able to hear the honest perspective of what you (and possibly) they are going through.
I can relate a little bit to the night terrors. My daughter had night terrors quite bad (not as bad a Mr. B)from about 18 months to about 2years. After that they popped up on occasion until about 2 1/2. Initially it was several nights a week (just one episode a night) and hers seemed to last from 10 to 30 minutes. As a parent it is terrifying to see your child going through this and not being able to help. We too initially tried to wake her but also found out this was not the best thing to do. She also had reflux from the time she was born and we found a relationship between her rough days with that and the occurrence of a night terror. I hope that he and you are able to get some relief soon. Take care.
Kristine Chu (formerly Hanson)

Lia said...

That is really great to know Kristine, it never would have crossed my mind to pair it with the reflux! The frequency jumped up dramatically after his contrast scan last week as well, makes you wonder! Thanks so much for your input and opinion, it's great to hear from you.