Thursday, 28 April 2016

My Little Pony

During our last admission our physiotherapist dropped off a walker for Gideon to trial.  She called it "The Pony".  When we first put him in it he was pretty unsure about it.  As soon as I said motorcycle and started making loud, very girly, poorly imitated, motorcycle sounds he seemed a little more impressed with the new contraption- but the moment it moved, he became unsure about the whole thing and really quite scared.  Today was about the fourth time he has sat in it and I think he's starting to catch on.

To ease him into it, I started off by playing ball with him. (Something he really enjoys)  I placed the ball in front of him, resting it on the handles, and he would push it off.  After this he was feeling more comfortable and less nervous.  He was pushing himself backwards and shuffling around in a circle a little.  We even had some smiles. 

Alex gets a little jealous of all the attention and support I have to give Gideon. I try really hard to make him a part of our activities but sometimes it's hard to get creative.  He did a really great job playing ball with Gideon while he was in his pony/motorcycle.  He also wants to help Gideon... I feel so bad when I have to tell him that he can't push him or stand on the walker when Gideon is in it.  I can tell that his good intentions are crushed and he thinks that I am just scolding him.  While Gideon was in the walker, Alex was super clingy too.  Actually, even after I took Gideon out, he wanted to climb all over me.  Sometimes I feel like there is just not enough mommy to go around.
I love my beautiful boys!
I'm sure it will get easier as the new equipment becomes more a part of our lives and less new.  

Now I can't wait to get Alexander a new bicycle and watch them race around together.  Birthdays are coming soon... well soon-ish.  June is just around the corner right?    

Off to the races!

Wednesday, 27 April 2016

RSV- Respiratory Syncytial Virus

We just saw the pediatrician this morning and it looks like Gideon had RSV (Respiratory Syncytial Virus) when he was hospitalized in March.  I think this is the second time he has had this virus.  It imitates the common cold but can develop into more severe lung infections in little ones with lower immune systems or chronic lung conditions.  This would most likely be the cause of his pneumonia - not aspiration.  We did see a respirologist last week who thinks Gideon has asthma and it was his opinion that these hospitalizations were not pneumonia's but asthma exasperation.  He has put Gideon on a new steroid puffer and upped his dosages.  We will see where this leads.  I don't think he had any of Gideon's medical records from the hospital he is usually admitted to; Those might help... My pediatrician rolled her eyes a little when I told her... LOL.  Gideon is still coughing and a little fussy today.  His feeds seem a little down. We had some lab work drawn just to check things out.

With a quick google search, it looks like symptoms can last up to 3 weeks.  At least with the new inhalers, his coughing shouldn't be so bad.

At least it feels like spring is here -Alex even picked me some flowers.

Soon we will be cutting the lawn and complaining about the heat. Can't wait!

Tuesday, 19 April 2016

Seedlings Braille Books Angel Program

Yesterday a package slip with Gideon's name was put in my mailbox.  I'll admit it stumped me.  What could it be?  Then I remembered that I had signed up for the Seedlings Braille Books Angel Program.   This program offers 3 free books a year to visually impaired children between 0-21 years old in both Canada and the United States.  You can choose 4 different books from their catalogue (contracted or uncontracted braille) and they will send you three of them.  Did I mention it is free?  Big time score!  Seedlings also sells braille books at a very reasonable price with quite a bit of selection.  I'm already soaking up their catalogue.  

Today I picked up the package and I couldn't be happier! 

The first book is Animal Shapes by Little Bee Books.  It has the braille taped on under the words on each page and it has great textures that highlight each shape; heart, square, circle, triangle and star.  The illustrations are adorable and the quality is great. 

The second book is Little Bee by Edward Gibbs.  This book again had the braille taped on under the words and is a traditional chase story.  Little bee is chased by frog who is chased by snake who is chased by mongoose ect.  There are no additional textures inside the book, but the bees wings on the cover are sparkly.  Solid little book!

Book number three is my favourite.  The Sensesational Alphabet by April Rofe just makes my happy.  I didn't know what to expect when I put it on my list.  To be honest, the cover put me off a little and I thought it might come off as a bit unprofessional/amateur/cheap.  I was wrong!  

There are scratch and sniff pages!  (The smell stuck to my fingers- so good!)

There are movable parts!

There is actual representation!

There are bungee cords you can pull! 

There are textures galore!

... and all these things are supported by braille, auditory buttons and sign language!  MIND BLOWING

Over all, this is an amazing program that opens up the world of books to all visually impaired children in our communities- no matter what your income!  How blessed are we to live in a time and place that these opportunities are available to us.  Thank you Seedling Angel Program! 

Monday, 18 April 2016

Home Again Home Again Jiggity Jig

So we are back home.  The oral antibiotics have not been going so well.  He's been throwing them up.  I'm not sure if it's a sensory thing or a taste thing.  The syringe doesn't seem to go well and when I try and hide it in a bottle he doesn't seem to like the taste.  Once he even threw up when I hid it in the bottle.

He seems to be doing better over all though.  The cough isn't as bad and he's sleeping through the night.  We had a weigh in and he is 17 pounds 5 ounces.  Not bad, relatively, considering how sick he has been.

Here's a toast (as I raise my cup of coffee) to sunny warm days, fewer lung infections, and to amazing husbands who make all things so much better.  I am so blessed to have you in my life.  

Thursday, 14 April 2016

2 More Days of Iv Meds

10pm is a rotten hour to put in a new IV- especially when it's being inserted into a little guy with very crooked veins.
Long story short- it takes three staff members, two hours and multiple pricks to get an Iv into my little one- and that's when he's hydrated!

Tuesday, 12 April 2016

Same Old Song and Dance

It feels like a bad joke.
What do you get when you cross my little Gideon with vomiting?
Answer: Pneumonia.

We were admitted on Sunday with vomiting, coughing, a fever and pneumonia. The ER doc didn't even wait for the chest x-ray results before saying we would be admitted.  (It helps when you've worked with the doc and have a history) We have become frequent flyers here.

John and Alex came to visit tonight. It felt nice to have the family together.   I've been singing lullabies to Alex over the phone. John says it makes him smile. Being away is hard for everyone.

I think the plan is to finish off the iv antibiotics before being discharged. Tomorrow Gideon will have another chest x-ray and more lab work. We are also suppose to get a referral to a GI specialist and a pulmonologist.  Hopefully tonight he'll sleep better and not wake up so much from coughing. I hope I get some sleep too. Between the coughing, the monitors beeping and the hospital bed, the lack of sleep and stress have been wearing.   Last night I couldn't get Gideon settled and I had this sudden headache. I actually threw up and somehow triggered a sudden spasm in my airway that closed up my throat. I think I freaked the nurse out a little.  I've never had my asthma triggered by throwing up before. Very odd. Maybe it was an allergic reaction to something I ate?Anyway, the nausea and closed throat only lasted a minute and with a little Tylenol and some sleep the headache was gone. Good thing too, because my little chickadee needs me.

Thanks for all the thoughts and prayers.   We'll keep you posted as things progress.

Friday, 8 April 2016

Long Days

On Wednesday Gideon and I had a long day.  I guess it actually started on Tuesday night.  We had to be at the hospital for 7am on Wednesday so we decided to spend the night in London so we wouldn't have to leave the house at 4am to get there.  No brainer right?  The Ronald McDonald house was all filled up as well as their extra hotel rooms so we had to book a hotel.  When looking online all the hotels were sold out.  I called one anyway and they said they still had a room for $175.00.  I asked if there was any way they could give us some kind of discount and they asked us why we were coming to town.  Luckily the hotel had a discount program for people coming into town for hospital visits and the room only ended up being $110.00.  Actually it felt more like a small apartment than a room.  Because we had checked in late, they upgraded us to a large suite.  It had 2 bathrooms, a sunk in livingroom. a kitchen with a full sized fridge, a dinning table that could seat 8, and a separate bedroom with a king sized bed and an on suite that had a jacuzzi tub.  Did I mention the balcony? I think the place had more closets than my house.  I did enjoy a soak in the tub, but we didn't stay long because we had to leave by 6:30am.  Gideon was in the operating room just before 9:00. He had an ear exam which ended up being a double myringotomy as one tube had fallen out and the other was blocked.  He also had a hearing test (ABAER) and an eye examination under sedation.  I won't have the results of the hearing test until our follow up.  The eye exam went well.  The doctor wants to see him in another 3 months.  She said his contact lens prescription has changed and then asked if he would tolerate glasses- bifocals.  

I didn't get into the post op room until just after 12:00.  His O2 levels were fluctuating a little and he had a bit of a wheeze but we got through it.  By the time we were discharged it was after 2:30.  The post op nurses were really great.  They even faxed his ear drop prescription down to the pharmacy so we could pick it up on the way out.  I debated getting a hotel room and just spending another night in town but Gideon seemed like he could tolerate the drive home.  Of course once we got home he started throwing up.  He threw up twice.  Yesterday he was still throwing up- lots.  I hate it when his puke soaks through two layers of clothing and ends up in my bra.  Anyway, today is better.  The anesthetic must be making it''s way out of his system.  He doesn't usually react this way to it.  I think it's because he was under for so long.  At least he has not thrown up yet today and he seems to be sleeping things off.  

Overall I'd call it a success - a long, tiring, slightly stressful, success.    

Sunday, 3 April 2016

DIY Communication Board and High Contrast Blocks

Since Gideon's verbal skills have been slow to emerge, I made a "communication board" for him out of a white board, some velcro and blank business cards that I drew on and laminated.  One side of the board is white and the other side is black.  I'm not sure how well this is going to work, due to his limited vision, but no harm in trying right?  I have embossed braille onto each laminated card as well.  

The idea is that I will show/hand Gideon a card while naming it and he will do one of these things: 
a) reach for it 
b) hold a gaze on it 
c) not toss it away 
                            ...and then I will give him the corresponding item.     

So far there has been limited success.  He doesn't like the sound of the velcro.  (I wonder if it reminds him of the velcro on his stander?)  He hasn't reached out for any of the cards, as he tends to be cautious with new things.  His eye gaze has been very difficult to establish because he often uses each eye separately and not together.  He is also in the "throw everything within hands reach far away and listen to it crash" phase.  Occasionally, he will just start to cry and turn his head away from the board when I present it to him.  So yeah- limited success.    On the up side though, when there is some success, he does like it when I take the card(s) away and give him one his favourite toys.  (Cards = frowns  Toys = smiles)  I guess it's a work in progress.   

Another little project I did was cover some of his blocks with black and white duct tape.  These high contrast blocks are much easier for Gideon to see and hold his interest for much longer.  

What DIY projects have you been up to?