Blankie Stories III (Grandma Jean)

Blankie Stories III...

Dear Grandma Jean,

You and Pappa left today and I was so sad to see you both go.  I know that you have as much difficulty leaving me as I do letting you go home!

I wanted to thank you for the lovely blankies that you brought to me this trip.  My Mom told me that you bought them at the Lions Gate Hospital (where my Brother T was born) in North Vancouver and that you'll think of me each time you go there.  That's pretty suiting since my brother spent time in the NICU there when he was born (and my Mom thought that was stressful!)

I'll be thinking about you and Pappa when I go to sleep with your soft blankies covering me, the holes are just big enough for my fingers to go through so I can suck my thumb.

I love that you thought that I needed TWO, you must really love me Grandma!

I also wanted to thank you (and Pappa) for all of the walks you take me out on when you're here for a visit.  I love nothing more then being outside!

I'm also so happy for all of the chances we had for snuggles, I sure love Grandma snuggles (maybe even more then Pappa snuggles!).

I really hope that you'll come back soon, my Mom said that she's missing you both already!

Thank you for being such a wonderful Grandma and spoiling me when you get the chance, I just love you and miss you so much!

Love,
Your Sweet B
xoxoxoxo (you can share with Pappa if you want)

P.S. You don't have to worry quite so much about me Grandma, I'm one tough cookie!

P.P.S. Mom cried writing this so you don't have to be too annoyed at her for making you cry reading this!

Walking With Grandma

Author Unknown

 

I like walking with Grandma,

Her steps are short like mine.

She doesn't say "now hurry up"

She always takes her time.

 

I like to walk with Grandma,

Her eyes see things like mine do,

Wee pebbles bright,

A funny cloud,

Half hidden drops of dew.

 

Most people have to hurry,

They do not stop to see,

I'm glad that Grandma was made

Unrushed and young like me!

From Our (Emptier) Home To Yours...

Blankie Stories II (Linda and Colleen)

This post is a bit late as we got the blankie last week but better late then never!

This blanket came to us via one of B's NICU Nurses, Colleen and her sister Linda. 

Colleen was one of the Nurses that saw B through that first

October 2012, from the post "One step forward, two back"

(terrifying) Christmas when B was coming back to us from his Sepsis/Meningitis.  You also might remember that she was the NICU Nurse that came and put a line in B's head when he ended up in PICU last October and they could not get a line into him.  I asked for them to call the NICU with the hopes that Colleen would come and sure enough she did! 

I put the call out for blankies and Colleen picked out the colours and found the 'wool' in Canmore.  (You can't see it from the picture but it is lovely and heavy and oh so soft!)  She then asked her sister Linda if she'd consider knitting it for Mr.B.  Linda agreed and here we are!  They came by to deliver it in person last week and I'd say that it was an instant success with Mr.B!

Thank you so much to both Colleen and Linda!  Mr.B loves, loves, loves it!

 From Our (Blessed) Home To Yours...

Musician in the Making

Not often I have time to post not one but two postings in a day...

Checking out the rain drum with Pappa

Such noise it makes!

We got to attend our first music class today (Mr.B, Justine, Grandma, Pappa and I...we were 1/2 the class!) over at Rotary Flames House.  I thought B would be so excited, and he was but he was also a bit unsure about it all!  Sarah, the Music Therapist from ACH, is running 7 classes for the kids of RFH to attend.  It will be a lot of fun to have B in something interactive and it's always nice to meet other RFH kids and their families.  The amazing thing was that Sarah told us to tap our hands on our knees and B actually started tapping his hand on his chest in time with me...AH-MAZ-ING!  He didn't keep it up for long but he did it and it was so very cool to see it happen.


B's first piano lesson with Justine

The plan this morning was actually to send B home.  He's back up on his full bolus feeds (five small feeds with continuous overnight) and he's tolerating it well.  The crummy part is that he's still 'positive' for the Entero Rhinovirus so he's still 'technically' on isolation.  His energy levels seemingly have come up also over the last 24 hrs so it's good news!

Wearing his big brothers head
phones and not too sure about
it all!

The plan to send B home was a good one but it got changed till tomorrow because we decided, since he's here and all, we'll just shake things up and try something new.  We have moved B to a new, Complete formula, one that's made with actual food...shocking, food.  Since his guts are SO sensitive he's been on an amino acid based formula for quite some time now but he's also almost 2.  I have heard from a few different dieticians that they've seen great improvements in kids with GI difficulties by going to food-based eating.  Sounds like a no-brainer to some of you I'm sure but keep in mind that Mr.B is exclusively g-tube fed AND he now has a g-tube that is permanent (for the next few years) and can't be easily removed or exchanged.  Why is that an issue?  When you put 'food' through the g-tube you have to flush the tube after with water to 'clean' it out and it can get quite gucky.  B already has a small stomach so we need to be careful at how much 'food' we can give him vs how big of a flush he'd need afterwards to clear it out. 

Brothers helping me take our B for a walk outside

The other things about going with a 'food' diet is that 1) I'd need a top of the line blender (we're talking at least $700) and 2) I'd need the time to make all the food, process it in the blender and then separate, freeze...uh, I'm tired just typing it all!  Now I'm not opting out of that, and yes, it would certainly be the best he could eat but we are trialing a pre-made food-based formula first.

Now THIS is a funny face!!  Love it!
 

The major issue (and why we've not attempted to try it until now) is that it is a milk-based formula and the thought was that some of B's issues with other formulas point to a milk allergy.  His GI is confident that it mostly likely isn't a milk intolerance per se but just that his tummy is that sensitive.

I am happy to say that we are now two bolus feeds in and NO RETCHING!  This is a very good sign! 

The plan is to go home tomorrow (fingers crossed) and continue on this path.  I'm feeling a bit excited (don't tell B!) that we might be able to start getting those intestines happier.

We also got a couple of visitors late last night as well to make life a little bit nicer...the in-laws are here for the next few days so the kids are very excited! (insert: "but Moooommm, Pappa said....").

We also got to do something very cool yesterday, I got to watch Rylan donate his Birthday money to ACH.  They do the coolest thing for donors!  They let them print their names on a heart sticker, stick it on the wall, write their name on a huge check and hold it up for a picture.   They ensure that the kids feel as important as they are and I am repeatedly impressed by this hospital and this is no exception.  I am so proud to be a parent of such giving, kind and generous little creatures!   

 

Our latest 'addition' to our family, Justine

Stretch!!

So life goes on, a bit more each day and B's getting stronger seemingly right before our eyes at times.  I have no doubt in my mind that this kid will walk and he'll do it sooner rather than later.   
 

 

 

 

 

 

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

 

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...