Thursday, 23 March 2017

Mantra for the Day




Can't seem to get this song off my mind - The perfect mantra for a sunny day and a little boy who just won't quit.

Gideon is on antibiotics again for an ear infection that is making his ear bleed.  Day 6 of 10.  Vomiting, blood stained sheets and mild fevers don't seem to hamper his mood.





Thursday, 2 March 2017

Stomach Juice Morning Jolt

So after getting Alex onto the bus this morning, Gideon accidentally pulled out his G-tube.  Sometimes he "plays" with his tube - sort of flicking it with his hand, while we do bum changes.  This morning, it came right out, fully inflated.  Oozing stomach juices prior to my morning coffee leave me feeling a little uneasy.  Ok maybe freaked out is a better turn of phrase.  Yes I may have been just a touch frantic.  We have had the G-tube since June, so his stoma is pretty well established, but I remember someone saying that they can close up on you pretty quickly.  I've only observed the nurses changing it out once... so I've never done it myself before.  I was trying hard to flash back to our clinic a month ago.  So my first instinct was to reach for a temporary tube to stick in the stoma and then bring him to the ER were they had experience putting these things in.  I stuck the tubing in, taped it all down with some gauze and then realized that his stomach contents were coming out the other end of the temporary tube.  Plan B- I then tried to find a syringe to deflate the balloon portion of his old MicKey tube that had come out but for some reason, I couldn't get my regular syringes to fit... maybe I was flustered?  I opened my spare MicKey box to get the syringe that comes in the kit, deflated the balloon, inserted the MicKey into the stoma, but the water wouldn't stay in the balloon, it kept pushing back into the syringe.  Then, when I tried to pull my syringe out, a part of the MicKey was stuck to the end of the syringe.  Really?

Long story short- It took just over 2 hours in an ER waiting room (Good thing I had something in his stoma!) and 5 minutes to put my spare MicKey in. Now I have to order a new replacement (CHA$$$CHING$$$), after just putting the last one in a month ago.  

Oh well.  At least my post trauma Timmy's Roll Up the Rim was a winner. YEAH Free coffee!!!

Does loosing a G-tube make you anxious even though it's not "technically" a severe emergency? Does it get less stressful with more experience?

Saturday, 25 February 2017

Toy Round Up


It's been a while since I shared some of the toys Gideon has been playing with.  He is over 2 years old now and he has been developing in so many areas!

1. Melissa & Doug Reusable Stickers - Gideon has been working very hard on his vision and memory skills and these reusable stickers have been great for this.  I've used these on white boards and on the fridge.  I pick out 4 - 8 animals and set them up in two rows.  I have him point to the animals while I name them.  Once he knows where everything is, I'll ask him to find a certain animal.  If it's no longer a challenge, I might mix the animals up or introduce a new one.  This is great practice for both his eyes (a sheep is much different looking than a crocodile) and his memory skills.  He has even started finding animals without me naming them first.      




2. Ever Earth Ramp Racer - This little toy has kept Gideon far more occupied than I expected.  The little cars are easy for his hands to manipulate and they make a really fun "click clack click clack" when they fall onto the next level of the ramp.  Design wise, there is one little flaw... the cars can fit sideways on the ramp.  If the wheels aren't pointed the right way, the car will just sit there.  This will result in Gideon becoming very sad!  I've tried to make it into an opportunity for him to sign the word "help".  I've also tired to turn it into a problem solving activity... but he just seems to get frustrated.  The nice thing about the design is that there is a stopper at the bottom on the ramp and the cars don't go flying across the room.  The cars are predictable and it's easy for Gideon to find them.  
    

3. Washable Crayola Crayons - Gideon has found his inner artist.  He LOVES to draw... ON EVERYTHING ; the floor, under chairs, his toys. (Which I try and discourage but he gets so into his pictures that they seem to spread everywhere) These washable crayons are great.  He seems to want to fill in all the white space :)


4. Melody the Musical Turtle by Leap Frog-  This thoughtful gift has been a huge hit with Gideon.  The buttons light up and there is all kinds of music.  
There are three settings: 
  • 1. Press the buttons that light up to play a song.  The buttons are lit up in sequence, and you have to guess which song you are playing. 
  • 2.Find the colours/numbers.  You have to find the colour or number on the turtle.  If you wait, the answer will light up for you to press.
  • 3. Memory Game- You have to remember the sequence of buttons you have pressed.


5. Drums and xylophone - Gideon loves banging things to hear what they sound like.  We were given a small drum and a xylophone for Christmas (sorry no pictures) and he loves them.



To end it off, here is a special treat.  Gideon is not the only artist in the family, Alexander painted this amazing picture of a porcupine.  (He drew the picture and I labeled it)  Hope you enjoy!





Friday, 24 February 2017

Deja vu- The Journey of Finding Yourself - Again?

We are all familiar with those classic coming to age stories. Teenagers go on a journey and "find themselves" though a series of misadventures.  These misadventures help define who they will become and, by the end, the characters have obtained a self identity and a purpose or direction.  No longer will they wonder aimlessly through life, they have gain enough experience to navigate this world, confident in their steps.  

Classic example- Stand By Me 1986


I thought I had finished my journey, that I'd already paid my dues.  I had my coming of age story played out during my late teens/early twenties and I was confident in who I was, what I believed and in which direction I was headed.

Well educated, happily married, career focused and a child to love.

Then life throws you for a loop.

After our second son was born, my self identity drastically changed.  Yes I had identified as being a mom already and it was a large part of who I was, but it wasn't the only part.  

The erosion started slowly.   

I stopped hanging out with friends.  Gideon needed me 24/7.  He wouldn't eat or calm for anyone else.  We had to cancel get together due to illnesses and we didn't take day trips on the weekend anymore.  My leisure activities dwindled as I was left with less free time for myself.  Gideon had sensory issues and was not able to tolerate going outside for more than a couple of minutes.  He would gag/puke with a breeze or if the air was too cold.  I was reduced  to tv watching and googling medical terms.  The appointments and hospital admissions were exhaustive and it soon became clear that I would have to put my career on hold to make sure Gideon would have the best start in life.  

After 2 years of this, my identity has been almost completely consumed/defined as a mother, a caretaker, a homemaker, and a struggling wife.  And the funny thing is, it sometimes feels like I'm failing in these, as restricted and limiting a definition as they are.  The laundry is always backlogged, I feel like Alexander is getting shafted when it comes to attention, and I feel under pressure to get all of Gideon's goals meet, which seem impossible when he has so many: Feeding goals, speech goals, physio goals, sensory goals, vision goals, social goals on top of medical demands.  I'm not saying I don't enjoy being a mom.  I love my children immensely!  I wouldn't give up my children for the world.   The thing is though, EVERYTHING in my world revolves around my children, and I don't think that is balanced or healthy.  

Now I find myself taking a breath. 

I want to identify myself as a woman, a wife, a friend, a family member, a creative mind, a traveler, a musician, an advocate, a person who makes amazing homecooked meals.  I want to be someone who dances to music and smiles more often.  I want to be hygienic and hairless.  I want to feel whole and spiritual.

The second coming of age journey needs to begin.  

Did you feel like your self identity slipped after you had a child with special needs?

Monday, 20 February 2017

Thoughtful Christmas Gift

My sister gave me this very thoughtful Christmas gift and I thought I'd share it.

This necklace is from Leigh Luna Jewelry and I love it!  They do some beautiful work over there as well as some custom designs.  This one has the names John, Alex and Gideon on it in braille.  Well... reverse braille?  They punch the dots instead of emboss them.  I'm head over heels and not ashamed to admit that I teared up a bit when I opened the gift.  




Since having Gideon come into our lives, I feel like my identity has been expanded as an advocate for children with special needs and for families with children who have complex care needs.  I have this desire to be strong and to let my voice be heard... but I also feel burnt out and tired.  I know that wearing this jewelry is not the same as burning down the gates of the Parliament,  but for me this necklace is both beautiful and symbolic.  It's a small way of feeling like I am letting other know that there is diversity in our families and if a stranger asks me about it, I'll gladly get on my soapbox.  

How are you advocating for the under acknowledged in your life?   


Wednesday, 15 February 2017

Valentine's Day Shark Attack


So... just when I thought things were steady, I went to pick up Gideon from Daycare and he was fevered and not quite himself. (Fussy, then lethargic, then not very responsive.  His eyes were not really connecting with me.  He was off!)  Normally I'd wait it out a couple of days and see if things would resolve but because we were having the MRI under anesthetic tomorrow (and because we were just under anesthetic last week, which upped our chances of a lung infection), I thought maybe I should just check it out and make sure everything could still be a go.  After giving him some Tylenol, I headed off to the local ER to see if I could have a chat with the on call Pediatrician.  The ER doctor was really good and remembered us from a previous visit.  He ordered labs and a chest x-ray, even though Gideon looked amazing.  The Tylenol had made his fever disappear and he was his old self again- smiling, playing, looking like a very healthy boy.  The Pediatrician on call came in before our results and he took one look at Gideon and said he should go home, and that he probably just had a cold.  Then the radiologist actually came to see us personally.  He told us that he thought Gideon had a left lung pneumonia again (Probably due to aspiration of some sort)  and that his white count was up.  I think he has read most of Gideon's chest x-rays over the past two years and he seemed very sympathetic and even mentioned how hard it can be when you have a special needs child plus another little one to take care of.  Very kind!  Once the ER doctor found out, he was kind enough to cancel our MRI appointment for us (Pneumonia and anesthetic do not really mix) and prescribed a well thought out antibiotic that seems appropriate considering Gideon's history of multiple pneumonias.  Now we are home!  Fingers crossed that the medicine does what it's suppose to do and we don't have to go back!

I guess it's a good thing I listened to my gut.  If I hadn't gone in to see someone, Gideon would have gone under Anesthetic with a pneumonia and he could have had a much worse outcome - possibly even an admission.        

CAUTION - GRAPHIC MATERIAL (Someone gets eaten and there is blood)
 Please enjoy this depiction of pneumonia devouring it's prey.  


Who knew pneumonia had such sharp pointy teeth?



Tuesday, 14 February 2017

Praise for the G-tube and Other News from the Front Lines

So life has been moving along...

1. I finished installing hardwood floors and we have now moved upstairs to the main floor of our new house.  I'm pretty happy with the results considering I've never done flooring before.  Extra Brag Rights - These floors were unfinished and thin (2 1/2 inch)- meaning I had to install, drum sand and seal the flooring!  (+10 Bonus points for installing the new dishwasher.)  My DIY skills have just leveled up!

2.  Gideon has been doing fairly well over the last 6 months.  Yes we have had vomiting.  Actually lots of vomiting.  Vomiting that has sprayed walls and stained carpets.  Vomiting that has brought us to tears. Vomiting that has.... uh... you get the picture.  BUT- even though we have had these intermittent episodes, we have avoided hospital admissions.  Why? Because we have been able to keep him hydrated through his G-Tube.  That and his puffers have really been helping to keep his O2 levels up.

The g-tube thing though, really is the hero.
All that medication we had to give orally that made Gideon gag and/or vomit? *POOF*- G-Tube magic makes it vanish before your eyes- straight to his gut!  What's this?  Gideon has decided he's not wanting to finish his bottle and mommy's under pressure to get his intake up? *POW*  G-tube to the rescue!  Dehydration knocking on the door?  *REJECTION* Our G-tube doesn't welcome solicitation!

Alright... so maybe not ALL our problems have been solved, but we've avoided hospitalization and that is a huge blessing.  

3.  Gideon is bum scooting like crazy and we have started trialing a new walker called the "Mini Pacer".  Looks like with the accessories we need, it might be around $1500 before the Assertive Devices Program- which should cover about 75% of it.  So far this walker has received mixed reviews from him.

4. Gideon has not really been gaining the weight or muscle mass we would have hope for.  Most little ones who are given a g-tube will see a lot of catch-up weight put on after it.  Gideon has been really really struggling in this area.  He seems to catch a lot of bugs and now he's burning more calories with all the bum scooting, but his stomach only seems to hold so much.   We haven't really been able to increase his intake without him vomiting.

5. There have been many gains- mostly due to Gideon not being admitted to the hospital monthly but also due to his eyesight improving marginally.  He now wears bifocals and is identifying pictures in books.  He has been learning his shapes, colours and animals.  His favourite thing to do, after tickling people, is to draw... on everything.  Washable crayons- you are my friends! He enjoys tactile books and has even been placing his fingers on the braille.  Who knows?  Maybe one day he will read.  

6. Language Skills - Gideon has been slow to make progress in this area.  I wonder if there are any studies that suggest feeding delays/oral sensory aversions can effect vocalizations?  The tongue is a muscle and I'm sure it is strengthened by oral feedings that might influence dexterity, right?  Or maybe there is a coordination issue happening?  Anyway, Gideon has been vocalizing "Hi", "Momomom" "Dadda" and "Aaaaa"(for Alex).  When I ask what a cow says, he reply's- "AaMmmm"  I've also heard "Kitty" when we've talked about a cat.  I also think he's trying to say tickle- "tatatata".  He has also attempted to sing Old McDonald- "Aaa Eee Aaa Eee O".  His sign language has been trucking a long too.  He has attempted to combine two signs "Ball please" when we are playing ball and  he will bum scoot to me , lift his arms up and sign milk -"Up milk" .  I've also seen the "more" sign combined with different things.  Steady onward little snail, steady onward.

So that's about it, other than some routine tests- an MRI of the head tomorrow under sedation, some lab work and a spinal xray- to check for the off chance of scoliosis.

Steady onward.