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Marching on…

January 29, 2013
It’s been just a couple of weeks since my first post, feels so much longer!  Harry’s recovery seems so painfully slow on a day-to-day basis, but when I take the time to reflect I realise just how much has happened.  We’ve had several appointments with the neuro physio now and despite the odd meltdown Harry seems to quite like her. She is very pleased with the strength in his legs and she’s told me that’s a very positive sign in terms of future mobility.  His arms and his trunk are our main challenge with him though, his arms are constantly bent at his sides and his trunk seems to be most comfortable forming a banana shape! It can be quite a stressful, frustrating thing to manage… just putting him in his car seat is difficult as it’s important to make sure he is as straight as possible and to try to bring his arms forward, but he gets really quite cross when we mess with him.  Stubborn he is, gets it from his Daddy!  
The big event that has taken place since my last blog however, is the fitting of his PEG tube.  He’s had a naso-gastric tube in place since that fateful day mid September when he became so poorly, and I remember the feeling as my heart sank heavily, watching  the nurse pass it.  He’d had one before his heart surgery at 3 months old, and after his heart was fixed we were delighted to be able to take the tube out almost immediately as he took to oral feeding again no problem.  I remember as I watched this nurse passing that damn tube up his nose again thinking, please, please, please let this just be for today, please don’t let this be a long-term thing…  4 months on and of course, it was still there.  Naturally, in an ideal world, the ng tube would’ve been coming out as our boy had learned to oral feed again, but after seeing the results of his MRI scan, his dad and I have accepted that we are in this for the long haul.  Miracle boy though he is, he’s going to need a little longer to re-master such skills as feeding, and in terms of priorities, well, it’s a little way down the list.

So, last Thursday, 24th January, the PEG was fitted.  It was the first time Harry has had to go under anaesthetic again since September, and it was a strange feeling going into the theatre with him, yet again, and giving him a little reassuring kiss as they held the mask over his face to put him to sleep.  Such mixed emotions hit me with the memories… the heart surgery, which was so wonderfully successful, then the bowel surgery, when kissing him goodnight didn’t seem as scary, as I honestly believed it would be a much more straight-forward procedure, then the next day, having to kiss him goodnight outside the theatre this time as the situation was too critical for his daddy and I to go in there with him.  Harry cried as they held the mask to his face, hating the smell and no doubt the taste of the gas… and the tears fell down my cheeks freely this time, despite it being such a routine procedure… the nurse must have thought I was a bit crackers!

Everything went smoothly though, and just a couple of hours later he was returned to us safe and well,  a little sore of course, but his beautiful, plump cheeks finally free of tape and tubes.

Since then we haven’t been able to do much with him physio-wise, as he is still in a bit of pain.  Understandably I guess, given he has had a hole put in his tummy!  So the boy gets a break from the graft this week, but back to boot camp next week when his pushy mummy will be pestering him again!!

One of the things I am finding most hard is the way my mind keeps comparing him to the boy he was before.  But I have realised this week that I have to try to stop that now.  It is like a grieving process, but we have to accept that we are where we are.  Harry has done so incredibly well to survive what he has and progress to where he is now, and it simply isn’t fair on him for us to compare before and after.  I have so much faith in our little soldier, his head is getting stronger, his legs never stop kicking, he’s taking tiny little tastes of milk from a flexi-cup and he generally seems more alert.  On good days I am full of optimism for his future, and unspeakably grateful that we are lucky enough he was strong enough to pull through and give us this hope.

We are also blessed with incredible support from our friends and family.  My wonderful friend Mandy has started a ‘Help for Harry’ campaign this month, where she is training to run the Wilmslow half marathon in March to raise funds towards his therapies:  www.helpforharry.moonfruit.com.  My husband and I were stunned speechless when she told us what she was doing, and then again, a week later when she gave us a total update of over £2500.00!   How can Harry not flourish in an environment like this, with such amazing love and support all around him?

So we put the past behind us, and march on, with gratitude, love and hope.

Tired, but tube free!

Tired, but tube free!

Heading home next day.

Heading home next day.

Not quite getting the point of the stimulation box!

Not quite getting the point of the stimulation box!

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