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?

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.          

Ninja Moves

Nothing like a little Ninja Action to boost your mood!

Now I have a craving for sushi...

Show Me a Sign!

Gideon is over 2 years old now but still not speaking.  He babbles sometimes and will cry when upset but has not really been able to communicate with us using words.  His smiles tell me he's happy, his squeezes, that he loves me.  When he pushes something away, I know he's really not in the mood.  Occasionally he will reach for something just out of reach that interests him and "complain" for help.

I expected some language delays because of his mild hearing loss, but there should be more emerging than what is accounted for.

Our speech pathologist suggested using sign language.

Surprisingly he has been picking up some words.  It's mostly when we say the word that he will sign it... he's not really instigating them.  So far ball, more and milk are the most consistent.

These are the words we are working on:
Ball
Sleep
Eat
More
Book
Dinosaur
Car
Tower      
Milk

Signing with Gideon is tricky.  Because of his visual impairment, I'm sure that when I model, he just sees my blurry hands moving.  Trying to figure our what the fingers are doing must be hard.  I try to do hand over hand with him.  Sometimes he lets me.  His signs are a little different from standard ASL right now, but I know what he's trying to sign.  

He likes the word sleep.  (Click for Demo)

He laughed when I first brushed my hand across his face and he then tried it.  He seemed to pick up on that one really quickly.

The other morning I was feeding Gideon his bottle while Alex was trying to eat his breakfast.  Gideon was signing milk (Click for Demo) while he was drinking.  I then told Alex, who was trying to escape the breakfast table, that he needed to drink more milk before he could play.  Gideon then signed "more milk".

It made me smile.  I told Alex that even his brother thought he had to drink more milk :)

I'd love to know what signs other parents find most helpful with there kids.  I feel a little lost in this new language I'm learning.  I really hope Gideon can catch on and start to express himself.  Fingers crossed!

Playtime

New and Old- Same Plot Different Child

It's been hard for me to write lately, for a number of reasons- some being mere practicalities, pure business.  The harder thing to admit is the mixed emotional state similar to paralysis that being overwhelmed can lead to.  These past two months have had such a contrast of highs and lows.

We moved to a new house in July.  We are now living much closer to a hospital with a pediatric team and John is much closer to work.  This has meant less commuting time for him and I even get to see him in the middle of the day when he comes home for lunch.  The house we moved into is a bungalow on a very quiet street- perfect for Gideon.  The only issue was that there was carpet all throughout the main floor.  With Gideon's throwing up issues (vomit on carpet = ewwwww gross) and his mobility issues (walkers and carpet don't mix all that well), we decided to rip out the carpet and put down hardwood.... ourselves.  And since we were redoing the floors, we thought we might as well take out the walls around the kitchen.  We hired a contractor for that part.  Unfortunately the contractor found aluminum wiring in our house.  This resulted in some extensive electrical work and sealed the "do it ourselves" flooring to stay on budget.

Then a very sad thing happened.

Our dog Sprocket bit one of the contractors when he came downstairs while I was with the boys.  She bit him on his heal and drew blood.  I'm sure she was just being protective and that she was unsettled from all the banging and noise from upstairs.  She was also still a little off because of the move to the new house.  My nerves were a wreck.  The contractors were very kind about it all.  Because Gideon has so many different workers coming and going from the house, we made the very hard decision to give her up.  We couldn't risk something like this happening again.  She was adopted very quickly but that didn't make my heart feel any less broken.  I had Sprocket for over 9 years.  She was a wonderful companion and I still feel sad and miss her.

Gideon has been doing fairly well.  So far the G-tube has been helping to keep him hydrated during his more intense vomiting stretches and we have avoided hospitalizations in both July and August.  His fight with solids has still been a challenge.  After his June admission, he refused to eat anything solid and would push the spoon away.  The past two weeks have seen some progress.  He has opened his moth for me a couple of times and he has been holding onto his spoon instead of just throwing it away.  Gideon is also able to sit unassisted now.

Alexander, on the other hand, has not had such an easy go.

About three weeks ago, after dinner, Alexander suddenly vomited and went unresponsive.  His eyes were open, he had a shallow breath and he was limp.  I was sure he had a seizure.  We called 911 and an ambulance came.  My mom rushed over to take care of Gideon, while I went in the ambulance with Alex and John followed in the car.  I kept calling Alexander's name.  I tried to pull him out of it.  There was nothing for me to do.  I was holding it fairly together, until the ambulance attendant checked his pupils- and they did not respond.  No movement.  No dilation.  There was nothing.  That's when the panic really hit me.

The ambulance rushed through the city, lights and sirens    No fever.  Sugar levels were normal.  What was going on?  It felt like the blood was draining from my head and sitting in my stomach.  We arrived at the hospital and he was still unresponsive.  For 20 minutes he had been in this state.

And then, out of the air, he cried.

He screamed.

He yelled.

No words.  No proper responses. It didn't feel like we were in the clear.  Every so often he would drift.  Like he was lost- gone to some other place inside his head.  I'd call his name a couple of times and he would start to scream again.  This lasted for a good 45 minutes.  Then came the gibberish and single words repeated.  Like a broken record, repeated rhythmically, mechanically.

Slowly the words were less rhythmic and more natural.  Not as fluent as he normally is, but the words came and I felt more at ease. Still we had no answers.  No reason.  No cause.  The lab work was normal.  The xray was normal.  The doctor had no explanation so he sent us home.

That night, Alexander vomited.  It was so late and we were so tired.  We cleaned things up and he slept in the bed with me while John slept on the couch.  The next night, he vomited again while he was sleeping.  A week later, he vomited again so I brought him in to the ER at 3 in the morning.  I was anxious.  Is the vomiting caused by the seizure?  Why is he fine during the day?  Why is he not complaining of feeling sick?  No fever.  Nothing in the lab work.  "This is not something we  will solve at 3:30am in the ER" as the doctor told me.  After the forth vomit during his sleep, I made an appointment with the family doctor to get an EEG expedited.  He had a sleep deprived EEG on Monday.  Tuesday, he woke up in the night vomiting again.

Can a virus last 3 weeks?   We haven't gotten any results yet from the EEG and I'm praying this is all just a virus gone wrong.

Anyway... we are all going to go to a Teddy bear picnic today and it's time to pack up the basket and blanket.  Keep pressing on.  Just keep swimming.  Break through the paralysis.

Try and bring some normality to these small little ones.      

Public G-Tubing

This weekend I fed Gideon at a small house warming party consisting of mostly strangers in their mid twenties to early forties.  This was the first time I used his G tube outside of our home.

We were in a fairly confined outdoor space, a small patio, so it wasn't exactly discrete.  I also didn't feel like I should isolate Gideon.  Everyone else was snacking and drinking so why should we go inside to eat?  For some reason, internally it felt like the old breast feeding debate reinvented.  Should I be concerned about making other people uncomfortable?  How would I feel if people stared?

I decided that all of it didn't matter.  I casually lifted his shirt, while distracting him with a book, and hooked him up to his extension tube.  I sucked up his formula in a syringe and went at it.  I had tried feeding Gideon orally, as much as I could, but it was hot and we were in a strange setting, so he was just not really into it.  I had to push more than I normally do into him via the tube.  It seemed to take forever.

Yes, some people looked uncomfortable, while others looked with wide eyes before turning to conversation with others.  Some had a sad look of pity in their eyes, others started up a conversation with inquiries into our situation.  Yes it came across a little awkward as I tried to talk to others, casually inserting comments into their conversations every so often, as I held a syringe and tubing in my hands.  I didn't care.  I was owning it. I was overcoming social taboos and claiming public G-tubing as normal.

I've never seen anyone g-tubing in public.  I'm sure parents do this all the time.  They really are more common than you might think; our surgeon said they do 2-3 G-tube surgeries every week.

I'm not sure what advice to give to others who come across someone G-tube feeding in public.  I think all the reactions we received were quite normal.  What I wouldn't do is intentionally make anyone feel out of place.  I don't mind answering questions about the G-tube or our situation with Gideon.  I don't mind ignoring the elephant in the room, in an attempt to normalize it.  What would make me angry is if someone assumed things about Gideon because of his G-tube and vocalized these assumptions or if someone verbally spoke up about loosing their appetite, while guzzling wine and asking us to be more discrete.  I'm so glad there was no one like that at our first G-tube outing.

I think the next time I see someone else G-tubing in public, I'll smile to myself-  as a nod to mutual understanding and in support of societal norms.