Sleepy Little Toad

Dream a dream my little dreamer.

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.

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.    

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.