Oh ya…The Manny.

I’ve written and introduced you to our life as a family with a child with autism.
I also need to touch on our other special needs child.  She isn’t anymore, but the first 11 months her her life she was.

We learned in April 2006 that I was expecting our 3rd child.  Unexpectedly expecting.  We were not planning anymore children after our second.  Emotionally I just could not manage another.  I was diagnosed with post partum depression after his birth (likely stemming from post traumatic stress disorder after his birth.  That’ll be another post for another day).  I did not want to go through that again – it wouldn’t be fair to my husband or the boys.  But here we were.  With another one on the way. 
We resolved that this baby was the one we didn’t know we needed.  And what a glorious day it was on January 12, 2007 @ 4:40pm I delivered a gorgeous blonde haired, blue eye baby girl.  I was dumbfounded when my husband announced it was “A Girl!”  A girl.  I had a daughter. 
And she was lovely and calm and slept and nursed and was just…good. 
She was our bonus baby. 
The dr told us the mark on her neck was probably a bruise from the birth as she came with her hand up at her chin.
About a week later the mark was turning red and spread out.  It was huge.  Dr said it was a birth mark.  Maybe a port wine stain. 
I started feeling another sense of dread.  Things were going so well.  And now we have this to deal with.
By about 1 month old it was becoming thicker.  We were sent to a pediatric dermatologist who told us that she had a hemangioma.   It is a vascular anomaly which is characterized as a vascular tumour.  It will grow rapidly then plateau and then involute by itself.  Great.  Ok.
She referred us to Sick Kids in Toronto to ensure that it was not internal and affecting her airway.  We were scared.  We were hearing the words MRI, tracheotomy, cardiology…
Terrified.

Our oldest son decided that we were not going to called it a “hemangioma because it’s too hard for kids to say.  From now on it’s her manny.”

By 4 months the “manny” was enormous.  It’s all people could see when they looked at her.  I hated it.  Little did I know the havoc it would wreak on our family.
Because it grew so rapidly, the skin on the manny broke down creating an ulcer.  That ulcer got worse.  And they were just persistent.  And extremely painful for her.
We were going to Sick Kids twice a week to monitor the ulcers.  We also saw cardiology because of the extra blood her little heart was pumping through and ENT to ensure her airway stayed clear.

She had had the ulcers for about 2 months when one morning my husband went to get her from her crib only to find her COVERED in blood.  Because the manny is all vascular and the ulcer is an open wound (that we kept a dressing on) she must have clipped it and opened a vessel.
We called my mom to come watch the boys and we rushed to her emerg.  We stopped the bleeding and then took her to Sick Kids. 
This happened 2 more times over the course of a month.  The third time it happened we had to rush her down to Sick Kids via emergency ambulance for a blood transfusion.  She had lost a third of her blood supply.  They would not let me sit back with her because her hemoglobin was so low she was at risk for cardiac arrest.  I wanted to vomit the whole ride there sitting in the front of that ambulance.
While we were there for the transfusion we found out the she had swabbed positive for MRSA.  That meant we had to be admitted as inpatient and she was put into isolation.  We were there for a week.  She was on round the clock IV antibiotics.  She could not leave the room and anyone who came in had to wear full medical garb.  She was still exclusively breastfeeding so I had to stay there and couldn’t go home to see my boys.  It was awful.
Two weeks after we were discharged she had to have laser surgery to try and stop the bleeding (her wounds were constantly weeping blood).  She had another laser surgery 3 weeks after that.
It was another 3 months after that that the ulcers finally healed.
She had been on codeine twice a day for 8 months for pain management and we had homecare nursing daily for 8 months to change the wound dressing.
Now we were involved with plastics at Sick Kids because of the extensive scarring from the ulcers.

I couldn’t help but wonder “Who did I piss off in the Universe to have to go through all of this after all we had already been through???”
And anyone who told me “God never gives you more than you can handle” I wanted to scream at them to F*** OFF!  My baby suffered for all of those months.   It affected everyone in our family.  Don’t you dare tell me it’s because I’m a good mom that this happened.  Or because I’m a strong mom that this happened.  Nuh uh.  Not gonna fly with me.  There were moments that I was just pissed off angry.  

So there was actually something that put autism on the backburner and it was no longer our focus.  How that GUILT ate at me.  I felt like I was letting him down by not giving him the 110% that we gave him prior to all of this which just added to the emotional toll.

Cut to the present. 
She is amazing.  Smart and still gorgeous. 
The manny isn’t really a major part of our life anymore.  Just a part of her.  Like her gorgeous eyes and pretty smile. 
And you should know that through her whole ordeal – she smiled that smile! 

We dropped by the dermatology dept at Sick Kids last Monday while we were there for dental appointment (oh ya – she’s also with Sick Kids dentistry) and all I could feel was love that the dr’s and nurses have for her.  She was like a rock star there!  They beam when they first see her.  They know what she went through.  What we went through – they went through it with us.  Some who weren’t as involved in her care came over and told us that they think about her often and that they’d never forget those eyes of hers.  Her derm pulled us aside for a mini check and was thrilled with how her skin is retracting and said she may not need more surgery.  We’ll find out when we go see plastics in 3 weeks.

My husband put together this mini photo collage showing exactly how far she’s come with her Manny.