Gideon's Immune System vs Pneumonia - A Metaphorical Look at Cat vs Toaster Video's

After Gideon woke up from an afternoon nap yesterday he was fussy and refusing to eat, so I brought him into the ER last night for some hydration.  They got his IV in his arm on the first try! (He is notorious for bad IV starts)  I feel a little bad, when the nurse came to do it I thought she was just drawing some lab work and I told her it was easier to get bloodwork out of him than to put in an IV... whoops! I'm so glad I didn't throw her off her game with that comment.

They also did a chest xray- Pneumonia Again!!!  What???

Luckily the little guy was putting on a show last night.  Although he has a cough, he was smiling and laughing,  moving around the bed and playing-  there was zero signs of him needing extra care (His O2 levels were fine) so they gave his first dose of antibiotic through his IV and sent us home with a 7 day prescription.  I really think the new asthma medication has been helping to open his airway and prevented us an admission last night.  

My big question is- What's with all the pneumonia?
Are these truly reoccurring pneumonias or are the antibiotics just not working?  Seriously-  He was admitted in January, March and April with Pneumonia.  He also had a confirmed RSV (Respiratory Syncytial Virus) in March.  Is this virus lingering longer than it should be? Do I need to disinfect my house and keep him in a bubble?  Do I need more vigorous hand washing protocols?  Do I need to google research how to improve immune systems in a possibly immune compromised child  until I get tired and end up watching cat vs toaster videos?  All very pressing questions...

56 Days- not so bad.

I've been going over some of my paperwork for taxes and I thought I'd share some stats:

• Gideon spent 56 days in the hospital or attending appointments in 2015- and that doesn't include trips to the local ER, Family Doctor or Audiologist.  That's over 15% of his year! (With the additional days it's probably just over 2 months!)
• The hours spent driving back and forth from London add up to about 6 days worth of driving alone (144 hours approx.).
• Gideon had 83 days of in house services for OT, PT, Speech, Dietitian, Infant Development and Low Vision.
• Gideon was put under general anesthetic for day surgery 6 times.
• He was admitted in hospital 4 times.
• We spent close to $250.00 on Parking.

Looking back on this, I'm fortunate to think- It could be worse!  It's all about the perspective.  There are families out there who have spent entire years living in the hospital with their little ones.  There are families that are dealing with children so sick, they are counting the days.  Praise the Lord that life with my two little Chickadees is busy and tiring but not despaired.  When you enter the world of parenting special needs children, life and perspective grow so much larger.  I think appreciation and love grows too.

As a side note: Gideon has been fevered and throwing up again - since Friday.  The asthma medication has helped with his breathing but he is still coughing.  Please send your thoughts and prayers this way that his appetite returns so his feeds will increase and we don't need to bring him in for an IV to improve his hydration.        

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!

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!

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! 

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.  

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!