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?

... And We Have Lift Off!

10 - Today is day three of Gideon opening his mouth for solids.

9 - I had the dietitian in today and Gideon is finally over 17 pounds! (17 pounds 3 oz)

8 - Gideon has also reached the 15% mark for his length! (80cm)

7 - He is sideline shuffling around the room and, when on his tummy, lifting his head off the ground and pushing backwards with his hands!

6 - When I put him in sitting position, I can let him sit unassisted for up to maybe 5-10 seconds.

5 - He can make his teddy bear "Jump" and Wiggle" when directed to.

4 - Rolling a ball back a forth with someone is one of Gideon's favourite games.

3 - He is happy; He laughs.  He smiles.  He smirks in such a contagious way.  His dimples could melt any heart.

2 - Gideon is exploring the world around him.  He is curious yet cautious.  He problem solves when he shuffles himself into a corner.

1 - Gideon is making progress.  He is growing, developing. learning; becoming a beautiful little boy that I am so very proud of and love beyond words.

... we have lift off.

Little Bird is Learning to Eat

Last night, during my daily attempt to feeds Gideon solids, he opened his mouth for me and ate off his spoon!

You have no idea how long I've been waiting for this!

At meal time, Gideon usually will deal out a number of avoidance techniques: he will clamp his mouth shut, push away the spoon, tilt his head back or shake his head no.  I place a little puree on his lips and am lucky if he licks it off.  Confession - Occasionally I revert to dumping.  Meal time has been primarily "food experience time".  This has been going on for over a year.  You have no idea how difficult it has been to stay personally positive, make his meal times positive and to continue this seemingly futile pursuit.     

I have been trying to model eating recently by using a big silver spoon and feeding myself large mouthfuls in front of him.  Literally right in front of his face.  Last night he had the biggest smiles, he was almost laughing at me, as I dished large spoonfuls of curry into my gaping mouth, smacked my lips and announced how good it was with a loud "Mmmmmmmm".  To my surprise, when it was his turn, he actually opened his mouth like a little baby bird. He opened his mouth for me over and over again.  Sometimes he would stick his tongue out for me to dab a little puree onto it.  For one bite, he actually reached for my hand with the spoon and brought it towards his mouth!   I was actually feeding him and he was actually welcoming the food into his mouth.   

I am seriously ecstatic. I pray that this is a break through for us!    

The Best Laid Plans...

Last Sunday, we brought Gideon in to the ER and they sent us home with medication and a pat on the back.  Sunday night Gideon woke up with a fever (101.7- not a radio station).  With some Tylenol, cold compresses and a dip in the sink, his fever came down.  He woke up with a very mild fever but seemed better on Monday.  We went down to London, thinking the Geneticist would be able to tack on some extra lab work for us but when we got there, the secretary just handed us the requisition and told us the doctor wasn't expecting to see us.  After all the lab work was drawn, we went to the cafeteria for lunch.  Of course Gideon threw up everywhere while John was bringing Alex to the washroom.  The lady at the table beside us was so kind and rushed over to help us with a pile of napkins.  She even wiped my boots saying "Be careful you don't slip".  Gideon and I were both drenched.  That was our cue to go home.  Luckily the drive was good and there were no weather concerns.

Needless to say, after a fussy night and his refusal to eat, I brought him to Owen Sound where they admitted him.  His O2 stats were in the high 70's to mid 80's so they had him on a little oxygen and they hooked him up to an IV to get him medicated and hydrated.  The pediatrician on call was really good with Gideon.  He introduced himself by touching Gideon gently while talking to him.  He even asked the staff to make a sign for Gideon's room.  I have to say it was above and beyond!

Although it wasn't a long stay (we got home on Thursday), it feels good to be home.  I know Alex is really happy about it too.  The antibiotics seem to be doing their job and Gideon is on the mend.  There is suppose to be a referral for a pulmonologist coming our way too, so maybe there will be some more investigations into his repeated lung infections.

So I guess it was just another normal week in our little house.

Pop Quiz

1. What did Gideon's latest trip to the ER reveal?
A) Pneumonia
B) Asthma
C) Virus
D) All of the above

2. What did the ER doc try and discharge us with before requesting a chest xray?
A) Bad cold
B) Viral Illness
C) Over Zealous mom
D) All of the above

3. How did Gideon present in the ER?
A) O2 levels ranging from 78-95%
B) Lethargic and fussy with laboured breathing
C) Vomiting in the room
D) All of the above

4. What did the doc say when she discharged us?
A) Take these steroids and antibiotics for the next 4 days
B) Come back if he is still vomiting
C) I don't think we should do any lab work cause it will only cause him more discomfort.
D) All of the above

If you answered D to all of the above you win.  Good job winners.

My poor little Gideon is sick.  He's not able to sleep.  I can't console him. He's throwing up.  His feeds are small.  We are suppose to see our geneticists tomorrow to have our blood work taken for the genome sequencing test.  If we go, I'm going to ask her to tag on some lab work.  It's so frustrating when an ER doc who doesn't know your son looks at you down her nose because you don't have a medical degree.  If I come in saying my son has a history of aspiration with pneumonia, along with asthma and I am concerned about his O2 levels don't look at me smugly and say his O2 levels were fine when he presented at triage.  I'm sure they improve when he is sitting up and screaming because a strange lady is poking him with a thermometer.  Lots of air coming in while his heart rate sky rockets is bound to improve the O2.  What I'm worried about is when he is in supine position, coughing, and too lethargic to even open his eyes all the way.

The thing is that Gideon still does not have a diagnosis.  There are many things out there that can present like a "viral illness" and really be caused by something systemic.  I really am happy that we can try fighting this thing in the comfort of our home and not be admitted but there is an anxiousness about it all.

The Plan: We'll see how tonight goes.  If he's up for it in the morning we'll head down to London to see our geneticist and try to have some lab work done on him while drawing for the genetic test.  If he's sick as a dog, the London hospital is not a bad place to be I guess.

I hate lung infections         

Yeah Yeah Yeah!

I just received an email from my professional organization CHIMA that they will be willing to waive a large chunk of my Continuing Professional Education credits for this term because of my extenuating circumstances! With out these credits, I would no longer be eligible as a member of my college.  I only need to obtain 1.5 credits by the end of the month and I can continue being certified as a HIM.

My foot is still in the door!

Put a Pancake in My Pocket

This morning while helping to get the boys out the door to daycare, Alex (my three year old) made me smile.  They have to leave the house before 7am so John can make it to work on time and this means breakfast for Alex is a bit rushed.  Often he has to bring half of it in the car with him to eat. (This morning he had only eaten one pancake before it was time to go.) He had a drinkable yogurt in one hand and a toy airplane in the other.  I stuck a banana in his right coat pocket and asked if I could put his airplane in the other so he could hold his second pancake.  He said he wanted to hold his airplane and didn't want it in his pocket.  I asked if he could hold both the airplane and the pancake.  He looked at me thoughtfully and said "I don't have three hands - *pause* - put the pancake in my pocket."

So that's what I did.