Be Kind To One Another

**This is certainly not the posting I sat down to write today but this is what came out.  When I write I just simply go with the flow and this was obviously something that I needed to clean off my psyche.  Thank you for listening!**

"Sitting on the dock of the bay, watching the tides roll away...Sitting on the dock of the bay, wasting time"

Well actually I'm sitting next to B's hospital crib watching the numbers jump up and down on his monitor but it kinda feels like the same thing sometimes.  Don't get me wrong, B's feeling well and his energy levels have certainly come up but sometimes it just feels like I'm in a time warp or an endless cycle.

I think I'm just a touch melancholic today as I just read the news about how a Mom (of a 14 yr old severely Autistic girl), at her wits end with life, tried to kill them both.  The hardest part?  She's certainly not the first to try and sadly won't be the last. 

Now I know that a Mom that would kill her child is shocking in the best (?) of times but take a moment and think about a Mom who was a fellow blogger, an advocate and well supported with family and friends that saw no other way out.  Yes, you can get angry and say there is always another way, there is always help, but is there?  Isn't it so very sad that this Mom thought differently, that she felt so completely overwhelmed and alone that murder/suicide was her only option?  I guess what I question is that how are she and I different, really different I mean.  No, I have no desire to harm my children, please don't think I do!  But she's a Mom, I'm a Mom.  She's got a child with Special Needs, I've got 2.  She loves to write and blog and advocate for her child, ditto.  She (seemingly) has a very supportive network around her, as do I...so WHAT, what went so horribly wrong?

We as Mom's (neuro typical children or not) seemingly think we can do it all.  We, as Mom's of Special Needs children, think we can do it all as well but we think we need to and have to do it all ourselves, alone.  The burnout among parents of kids with extraordinary needs is huge (as you can well imagine) and I think about how completely bone tired I am on a good day.  What frustrates me is that I've had to beg, borrow and plead for each and everything my children have in terms of support (governmental).  Now I'm a Mom that 'knows' the system for the most part and I still have to fight each and every step of the way for what we need and want for the boys.   I certainly can't imagine how it would be to 1) not know the system and what supports there are (I kind of remember those days but I've been neck deep in this for awhile now) and 2) to be in a Province (or Country) that doesn't offer much help or support (or it costs a great deal of money).  It frustrates me and it exhausts me, (more then a horrific night with Braeden being awake every 10-20 mins).

Something needs to change, I just wish I knew what.  I am so horribly saddened that things like this (the killing of the innocent) have to come to light in order for change to be considered.  Do I find the idea of harming one's children reprehensible?  Yes, yes I do but do I think I understand this woman on a molecular level of how much she must have been suffering to get to this point?  Sadly I think I do. 

I realize that many of you aren't in the pool of life with us directly with your own Special Needs kiddos necessarily but if you're reading my positing then chances are you're touched or have been touched by someone with those Special Needs.  Do me a favour, as small of a favour or as big as you'd like:  Instead of saying, "I don't know how you do it", try saying, "I'd like to do ____ to give you a hand".  Now chances also are that the Mom that you're offering that to will try to dissuade you, even tell you it's not necessary.  Try, if you will, to persist.  We all need help, all of us, we all need a break sometimes and what we all need most of all is kindness. 

There are many things you can do in your day but kind words to someone, a friend or stranger, will be remembered at the end of each day.

(Please note that I'm not asking for help for myself, I've got an amazing group of family and friends that support us but instead to please just be kind to one another.  Help one another, support one another and if you can, offer to do something kind for a Mom in need, even if it's simply "You're doing a great job".)

My hopes are that Isabelle Stapleton can and will make a full recovery and that change can and will happen.

Please my friends, just take a moment and be kind to one another.

Blankie Stories Part I (Brenda Clarke)

Awhile back I put out a request for anyone that could and wanted to make a blankie for B.  I was amazed and thrilled that I got some wonderful offers!  Mr.B is a complete blankie baby as were his brothers (and his Momma too!), there is just something so comforting about a knit or crocheted blanket!

The first blanket arrived this week all the way from Nova Scotia from a wonderful woman named Brenda Clarke.  Brenda is the Grandma and Mom to the incredible McConnell Family.  The McConnell's have been so giving and kind to us throughout our journey (and all four years we've known them) and we met Brenda through her daughter Lisa when she was out visiting.  Lisa brought the blanket to the school (where our children attend together) and there were tears in her eyes when she handed it to me...I looked at her and said, "hm, think I'll open it up the letter at home!".  Brenda, like her daughter, is so wonderfully kind and she was one of the first to offer to make B a blankie (and sent me the nicest email asking if she could).

Checking it out...

 

Happy B approved!

 

I love this shot because he's rubbing it on his nose,
I am imagining that he's smelling the 'nature'
infused in the love of this blankie!

I asked those of you making blankets if you could include a picture and a bit about the blanket itself and I've asked Brenda if I could share part of her letter that she wrote to B.

Tastes okay too!  He doesn't generally chew his blankies so this
one must really be special!

Brenda wrote:

August 26, 2013

...Here's a little bit about me...I live so far away.  I live in Nova Scotia, that is on the east coast of Canada, at the edge of the Atlantic Ocean.  I saw that this past summer you were rolling in the sand on the west coast of Canada at the edge of the Pacific Ocean.  I think you really enjoyed it and I know how it feels, because I love to be near the water and the sand too.

This year I learned to kayak and have been really enjoying the pleasure of the freedom of summer, sunshine and family.

When I decided to make this 'blankie' for you, I wanted it to be blue for all the sky and water I have around me and green for all the trees and grass that I live near.

So Braeden from my heart to yours...Enjoy everything that I little boy does and I hope to meet you when I come to Calgary next time!

Also tell Mommy she's Awesome!

Brenda

Brenda Clarke on her kayak with the gorgeous blankie for B



Now if you're not teary-eyed I certainly am!  I had a good cry when I saw how gorgeous the blanket is and cried again when I read the letter.  To say Mr.B approves is a vast understatement, I handed him his new blankie and he immediately threw the toy down he was playing with and stuck his thumb in his mouth...100% Certified, B approved!


(Unfortunately) we also know it's hospital approved

I am repeatedly touched at people's kindness when it comes to our little family and how supportive you all are.  Thank you for that and I look forward to bringing you more blankie stories soon!

From Our Home (on Unit 2) To Yours...


Not The Best Way To Do Back-To-School

Sad that I didn't get a chance to write a "We're Home" post since we ended up right back in ACH less then a few later.  Of course this ties in with the first week of school for the big boys and Torin with a double ear and sinus infection...of course.

First day of Gr 2 and 3! (poor T, we didn't know how sick he was!)

I knew B wasn't 100% when we took him home (he spiked a 38 degree fever right before we left hospital) but I had high hopes.  I was 100% on board with taking him home Tuesday and was sure things would be okay.  Sadly by Tuesday night things were already not so 'okay'.

Back in jail good think he likes it!

I think with being at home B's on the move so much more (he never stops) and with the extra exercise his tummy said enough.  He was cramping up during feeds again and I had to switch him back to a 75/25 blend of formula/pedialyte.  He was up half the night with just being 'uncomfortable'. 

Escape artist in the making...

Wednesday was a quiet day at home and B slept on and off all day (so not normal) and was content to be held between times of play (also so not normal).  He was also not stooling nearly as much as he should have been (you're welcome) and yet another loooong night.

Peek-a-boo Mom!

Thursday was much the same as Wednesday and I knew he wasn't getting enough calories because of the need for the pedialyte.  He was increasingly uncomfortable on Thursday night and couldn't settle into sleep.  He would sleep, scream, sleep, scream, etc.  I finally vented him after a another lovely screaming episode and he had a huge blood clot come through his g-tube (directly out of his stomach).  I wouldn't have been so panicked if it was 'old' blood but this was fresh.  I even went so far as to get a urine container to put it in just to show the ER staff how large it was (they didn't seem all that impressed FYI).

Attempt at escaping number 2

Off to Emerge at midnight with the offending clot in tow, unsure of where the heck it had come from.  We were seen fairly quickly since he'd just been released a few days earlier and the Resident asked if I thought he needed to come in.  I really couldn't decide at that point, he was 'fine' in Emerge but then the more I thought about it (and talked to her about it) I knew he also wasn't getting the calories he needed at home.  The thought would be that he needed to go back to continuous feeds again and I just can't do those at home.  Imagine if you will a 22mth old attached to a feed line and pump trying to crawl everywhere...it just doesn't work.  Nor does B just 'sit' still while at home, he wants and needs to explore.  So back in we came.

Baby on the run...

He got put back on the Red Team on Unit 2 since Dr.V was still on rotation for one more day.  Thankfully we were upstairs only 5 hours later (after walking into Emerge) since I was completely punch drunk with exhaustion.  Mr.B refused to sleep and had pretty much been up 15 hours straight at this point.  He still took a bit to sleep after getting up to Unit 2 but he did finally crash.

I'll do it myself!

Dr.V did the first day of Pedialyte to give his tummy/guts a rest and then we went back on full strength formula but on a continuous drip.  He's been tolerating that since yesterday so that is good news and the other good news is that there's not been anymore blood.

As for why you ask??  Sadly, once again, nobody knows.  The abdominal xray is about the same as the one that he had a week ago, and the belly is soft and pliable.  Who knows!  The assumption is that his tummy is just that sensitive right now. 

Sometimes Mom and I just sit and
think of what will come...

I'm not too sure what the plan of action is right now (being the weekend and all) but the hope is for a short stay. We've also got a new Dr on, I haven't met him yet and he's new to B.  Dr.V has left extensive notes for her Team replacements though so I know that we will be taking it slow and steady going up on his feeds. 

It seems that time is what he needs so time is what he'll get.

From Our (Unit 2, Again) Home To Yours...

Gaining Ground, One Day at a Time

We're back on full strength formula and IV's out (last night)!  Yay for Mr.B!  He's still on continuous feeds for now and we'll put him back onto his bolus feeding schedule tomorrow (fingers crossed!).  I know he'll handle it, he's trouping through.  I am so thankful that Dr.V is his Dr. this trip and that we've been able to take it as slow as we have because one more day during this 'stay' could certainly mean the difference between us being back again soon or not.  I am hoping for a release on Tuesday if all goes as planned, a good tie in for the first day of school of course!  Now if we could just get this boy to gain some weight, he's dropped more weight again today and his little ribs simply poke right out!

B was in good spirits today when I got here this morning, he played (albeit quietly) and when he got fussy I tucked him into bed so I could sneak out to grab groceries...ha ha Momma.  He lay and watched me quietly for TWO hours, he knew I told the Nurse I would stay until he was asleep!  Stinker.  I know he's feeling better because he's just fallen asleep (and slept so much) for the past week that him not sleeping today was a good sign. 


Nurse Sarah made an awesome 'plastic' cast for me so I could
take a bath Friday night!



IV's out, not lemme in this tub!!

Sweetest Face!

I did finally give up on him falling asleep and ran out to Costco to shop for the back-to-school lunch goodies.  Apparently Mr.B was great entertainment while I was gone (no surprise there).  Nurse Sarah (we drew the lucky straw and got Sarah and her wonderful Student Daniella for her rotation) put him in his seat in his doorway and he danced and laughed for anyone that would come and hangout with him!  Sarah was able to get him to do his 'River Dance' as well (I still haven't caught it on camera!) and lots of hand claps and kisses.  He was well stimulated and happy which is always such a relief to hear so that I can try to assuage the guilt of not being here.

Mr.B did have Nurse Sarah and I completely in stitches last night too as he said "wow" clear as a bell for us.  Hilarious!  He will repeat it but it's certainly not as clear as it was the time he said it out of the blue for us.  (It is also nice to have a 'witness' so that I don't have to swear that I'm not making it up! :))



OH how teething SUCKS!

I am also really not sure how it is physically possible for one little boy to cut quite so many teeth in such a short period of time.  I counted all 8 of his top teeth today (only had 2 molars on top two weeks ago) and he wouldn't let me count the bottom completely but it looked like 6 are through (3 previous).  As if being sick wasn't enough!!  I'm sure he's been in constant pain on top of everything else because his poor gums are so red and sore looking.  Leave it to B to break the norm!!

All in all it's not been a bad week, just a long one but life always gets longer when B's in hospital.

I'm so lucky RT Kari's been by to see me the last two nights
(she was on vacation earlier, the nerve!)
(Kari was B's HomeCare RT for his first year after his first release from ACH)

From Our (Unit 2) Home To Yours...

Entero Rhinovirus Fun at ACH

Meanwhile back on the range...B's been in hospital since Tuesday.  Could it be the explanation for the 'crabby baby' last week?  Highly probable.

Yeah, this is one sick baby

I had to bring B into Emerge on Monday because he was retching up a storm and not tolerating his food well (sounds familiar).  The thought from the ER Doc was that it was a stomach flu so we got sent home with two more doses of an anti-nausea drug and the hope it would blow over.  Was I hopeful?  Sure was but was also saying as I left Emerge, "great, see ya tomorrow!".  I do have to say though, in and out of Emerge in 4 hours?  Groundbreaking!

Teething and sick?  Gee, lovely!

Of course B plans this for the day when my Mom and Sister were set to leave to go home!  He had a horrible night Monday night and I knew Tuesday morning he had to be admitted because he couldn't even tolerate the Pedialyte that we'd been sent home on.  My Sis and Mom put off leaving for a few hours so that I could take him back in and not have to take the 'big boys' with me. 

Back in we went and got the same Dr as the day before so it was known pretty quick that B'd have to be admitted.  It was a decent Emerge visit though, great Nurse two days in a row and only ONE poke to get the IV in (of course this is after I told the Dr that I would give them two shots before I wanted the NICU or Transport called).  The not-so-good-news was that Purple Team (B's chronic kid team) was full so we had to be put on the Red Team but our Dr.V's on Red for this rotation and we're on Unit 2 so life is good.

Mr.B's just been blah, lethargic and well, blah.  He's had a few moments of 'happy' B but they are few and far between still.  He's content to lay still on the floor or in the crib (unheard of) so I know he's not feeling well at all. 



Too tired to go over Momma's leg

We finally got an answer today though, he's got Entero Rhino Virus (kind of a cold/flu in one).  He's not at all stuffed up though and his cough is gone, it's all GI (again, big surprise).  We did manage to get him back on Pedialyte today and it's been running since this morning and he's tolerating it.  He did get a saline cap on his IV tonight (still in but 'off') so that's another big step.  It's a beautiful IV too so we certainly don't want to pull it too soon knowing B.

Aiding and abetting with Nurse Nora

He did have a reassuring burst of energy tonight (just a bit ago) which was funny to watch.  I left Nurse Nora holding him so I could run down and grab some soup and when I got back there was a drumming party in his room with Nurse Breanna and Nora.  B was so happy to see Nurse Bree that he decided to make his way out the door to catch her when she went across the hallway to see another patient.  It was pretty darn funny to watch and very nice to have a good laugh!  I wish I'd been fast enough to catch it on film but then again, I don't know if I should have proof of him crawling across the floor here (I did sanitize him really well after)!

I keep hoping we're rounding the corner so I will have the same hope again tonight as he goes to sleep.  I've been going home and (not) sleeping there and B gets good and mad at me when I return.  This whole 'balanced' life stuff is for the birds!

From Our (Unit 2) Home To Yours...

Healing Heart

This boy amazes me, simply astounds me...Mr.B figured out a new trick today...

I had no words, I was literally speechless to see him get up there and not only that but he did it several more times over an hour.  I knew that his arms and shoulders were gaining strength from all of his 'crawling' but to have the strength to fully lift his bum off the ground?  No idea!  The picture is blurry but you can see that he's on the inside of his feet!  I honestly couldn't tell you what is next for this kid!  Could it seriously be possible that he could walk by 2???  I would have been happy if we could have gotten him this strong (not that he isn't the one doing all the work) by age 4 or 5...AMAZING!

It's actually been an amazing couple of days...

Friday we got to go to the first "Sibling SuperHero Day" at ACH.  The Pediatric Residents put on a lunch for all the siblings of the chronically ill patients, how awesome is that?  We got a lovely flier and invitation in the mail a few weeks ago and I knew that we certainly had to attend.  I thought it would be a wonderful opportunity for the kids to have a good 'pat on the back' of course but they went over and above what I expected.  (The only crappy thing?  I forgot my camera and had to take the pictures with my phone.) 

SuperHero Rylan

 

SuperHero Torin

 

My three SuperHeros!  Thank you ACH Pediatric Residents!

We walked in, signed in and the boys were gifted their 'cape' that they later could decorate however they chose.  They had a huge pizza lunch for the kids and they got stuff their little faces with pizza and salad while listening to a few guest speakers (which I missed since B threw a fit, more on that in a bit).  They got to colour, play AND build their own sundaes and eat cupcakes!  I would say they were pretty darn happy!  We got to see some familiar faces too which was very nice!

It was a great day for the boys but a looong day for me.  Mr.B threw two fits, two days in a row that were seemingly out of nowhere (for me).  I do understand the second one (the day at ACH for the party) since he would have been stressed about being at ACH (we were there 4 out of 5 days last week), but the day before we'd been at home, just he and I.  I can't stress enough what a 'happy' kid Mr.B is, he really has a happy disposition and when he's unhappy there (generally) a really good reason why.  The first 'fit' I could not get him to calm down, could not.  I knew he wasn't in pain (not a pain cry) and I knew he was frustrated.  I sang, rocked him, played with him, nothing worked.  Of course I was trying to get out of the house at the time to get to ACH for an appointment so I was trying my darndest.  I finally (at a complete loss) took him outside and he calmed down enough that I felt comfortable putting him in his car seat while I grabbed my purse.  I was so frazzled at this 'new' B that I immediately burst into tears once in the van and B?  He started to laugh and play, happy as can be to be 'on our way'.  Quite the funny picture I'm sure, me crying and B laughing.

Needless to say when it happened again the next day (at the party for the boys) I was feeling more than a little overwhelmed.  Not because of the 'fit' per se but because it was painfully reminiscent of T's early 'fits' (early Autism).  I was overwhelmed that we could be looking at the possibility of Autism on top of everything else.  I know Autism, I can do Autism, and now that I'm not in the emotion of the moment, I know I can do it with B too (if it comes to that).  And yes, I know, he's almost 2 and he's entitled to a 'bad' day or two.  In the moment though?  I pretty much felt lost and overwhelmed.  Interestingly enough you're probably wondering how I calmed him down the second day?  I pressed his hands against the window (we were on the 4th floor) and looked outside with him.  It is nature that calms him, nature that soothes him.

When we got home from ACH that day I was still feeling overwhelmed and B has this latest thing that whenever he's put down on the change table he screams and cries.  I was obviously at my end because I again just started to cry, so frustrated and so upset with myself for even experiencing frustration with him.  Poor Mike came home in the midst of this and bless his huge heart he jumped in and took over without asking anything (my good man knows enough to know when I'm done).  I then took my sore and sad heart to my room, undressed and slid into bed to cry my tired heart out.  I knew I was tired (big surprise) and I knew I was just done, breaking point past, done.  Stressed looking for a new Aide for B, stressed about having to re-negotiate (again) with FSCD and super-stressed about knowing that my Mom (and all of her incredible help) was leaving in a few days.  I then slept.  I wish I could say like a baby but at least I slept for a few consecutive hours. 

When I woke up I'd like to say that 'all was well' but in reality I just lay there and thought about life.  Thought about how tired I am and how worn out I am, generally feeling sorry for myself.  I was listening to the sounds of the house and heard Torin asking Auntie Mobee a question (my sister from Chilliwack, BC).  At first I assumed he was chatting with her on the phone and then I realized that no, he was talking to her in person.  When I got up I walked out into B's room to find one of my big sisters right there in my home after driving for 11 hours all day by herself to be there...my own Sibling SuperHero.  I had no idea she was coming, although I'd been 'teasing' her with the idea for over a week once she got home from Australia.  To say it was the perfect end to a crappy day is putting it lightly.  She just so happened to show up right at the time when I needed a boost and I'm so thankful for that.

The boys were also beyond thrilled (and did forgive her for coming without my nephew) and I think that my Mom was happy for the extra pair of hands (Mr.B too).  The lucky girl got to go shopping with me all day yesterday to pick up what we needed for Rylan's Birthday party today!

B's new favourite toy from our new friends Susie and Bob!

Rylan, bless his little heart, had a long wait for his birthday party this year.  Rylie turned 6 on Aug.6th but since B went into surgery the 7th we booked Ry's party far enough away so we had an 'in case of emergency' with B.  Today we had a wonderful day!  It would have been nice for some sun and a bit more warmth but hey, it was still great.  We rented our local outdoor pool and instead of just Ry's friends we invited siblings and parents too.  We had a great turnout and even more important the kids all had a blast.

A blurry shot but I just love this expression!  Such great toys we have!

My 7 year old is growing rapidly and I suggested something new to him this year, instead of presents how about a twoonie (two dollar coin in Canada)?  After I explained the concept, a twoonie for Rylie and a twoonie for Alberta Children's Hospital (as a donation) he was completely on board.  I am so darn proud of this kid!!  Now of course he still got some presents (lucky kid!) but he also collected $67 dollars as a donation to ACH.  I explained that we'll go later in the week so that he can give his donation to the hospital and his response was "Why not tomorrow Mom?".  I'm not 100% certain he really gets how awesome it is but I think he's kind of got it.  What a kid!

Forgot to B-proof here Momma!

 

Mom's trying to cook dinner so she gave me a can of tuna...Awesome!
(and he played 'hockey' with it throughout the whole house!)

 

New boomerangs all the way from Australia from Auntie Mobee

Tomorrow we are off to Hearing at ACH bright and early and onto our last day with both my Sister and my Mom (she's driving home with my Sister as a co-pilot).  I'm not too sure what shape I'll be in come Tuesday morning when I need to say good-bye to both of them but for now I'll just concentrate on getting her to forgive me for keeping her up while I post this!

Auntie Mobee Pattycake

I LOVE this 'James Bond' face..."I got ya Mobee!"

From Our (Full of Extra Love) Home To Yours...

The Face Of Our Angel

The face of our Angel

Today was a serious day...it was HAIRCUT day!  This is actually B's second haircut but his first one was a little smaller than this one.  Needless to say Mr.B was NOT impressed with his Momma's decision to cut his hair, actually shave his head. 

little ham

It was time for the back-to-school haircuts and B's had this 'bald' spot at the front of his head where the PICU team shaved it in June to put a line in (although it never got put there after all).  It just made some sense (before I knew about the 'torture' it would cause him) to have it all the same length again and start over.

One of life's tortures, it was horrible
but we all survived

Needless to say I knew he'd fuss through it but I wasn't prepared for him to completely freak out to the point that he almost ended up with a mullet!  I had no intention to torment my poor baby but we were that far into it, we just had to power through it.  As you can see from the pictures he was NOT happy with me and he took 10 mins just to calm down afterwards.  Thankfully we were with out Hairstylist, Melissa who's been cutting the boy's hair since T was 18mths so she knows us well and I don't think she was too fazed by it.  However it might be a bit (like 5 years) before we attempt that again.

Tears shed by all but we survived..

B is now spending more and more time upright and spends time sorting (and by that I mean throwing) his toys in his bins.  I love watching him problem solve through things, it is so very awesome to see.  See the amazing video HERE (not too sure how/why it is sideways though!)

My Mom is still here and I can't remember what life is like without help again...I don't want to think about life after she leaves again.  It is SO nice to have someone that I can just hand B over to so I can do something!

We are doing another Oxsymmetry test overnight tonight (if B ever falls asleep) and this might just be our last one (for now), fingers crossed.  We've been oxygen-free for two full months now (aside from the surgery hiccup) and I can't even tell you how freeing it is!  I still have friends tell me that they get concerned when they see him without it though! 

I still have to get a video of his 'river dance' and he's now answering me when I ask him "what does a cat say?" (might not sound like a typical 'meow' to you but he's still responding!).  Our boy is growing like a weed and getting so much stronger as each day passes and we have so very much to be thankful for!


From Our Home To Yours...