Friday 28 June 2013

And We're Off

It's been two days since Munchie had her cast fitted, it's not the prettiest of things and its a bit cumbersome but she's taken to it so well. People are right when they say babies adapt quickly, she's sitting up, resting her hands on her knees in the old man style that she does, playing, rolling over and most importantly she's still the gorgeous, funny, smiley and happy little girl she's always been.



The cast fitting was traumatic for both me and my husband but not for Munchie, she appeared to be completely unfazed by the whole thing, happily munching on 'Sophie' whilst the Consultant and nurses set about their work. It didn't take long, no more than 15 minutes but it seemed like an age to us. The nurses were great, very reassuring and informative but above all took the time to listen to our fears and answer our questions.

Obviously things have changed slightly, it's a bit of a struggle to get Munchie into her car seat, I can no longer get her into the high chair (on the look out for one with a removable tray), she can't go swimming or have a bath and there is a whole bunch of clothes she can't wear. But it's not going to stop us, I've had the scissors out redesigning some of her baby grows, we've adapted bath time to wash, massage and cuddle time, and I'm looking for an activity to replace swimming.


We'll take one day at a time and face each new challenge with a smile.

I've been wanting a new baby monitor for sometime and after wadding through a pile of Internet reviews and asking for recommendations from my friends and the lovely people I've met on Twitter, I finally opted for the Summer Infant Baby Touch Digital Video Monitor.  Its fab, the picture quality is amazing in both day light and low light and the sound is crystal clear.  Its given me peace of mind now Munchie is in her own room, I can check on her without disturbing my light sleeper of a monkey and when I can't sleep in the middle of night I can watch my baby girl sleeping soundly or in her case noisily.

Tuesday 25 June 2013

Questions

Questions, I have so many questions.  They come spilling out so fast that I can't keep up and I'm scared I'll miss something or not find the answer

  • Will it work?
  • Is it the right thing to do?
  • Will she be in pain? (From what Ive read it says not but how do they know that for certain)
  • Will it scare her?
  • How much will this slow down her development? Will she catch up?
  • Will she still be able to sit up and roll over?
  • Can she still kick her legs?
  • How will we change her nappy?
  • Will the cast rub?
  • Will the shoes and bar rub?
  • How will she sleep? She's such a wriggler in her sleep
  • What will we do about our night time routine ? - Munchie has a bath every night and this is her signal that is time for sleep.  Oh she loves her bath
  • Will she still be able to sleep in her grobags?
  • How will we get her weighed?
  • What clothes will she wear?
  • How will she fit in her car seat? Will she be uncomfortable?
  • How will she fit in her high chair? It has a fixed strap in the middle so how will I get her legs in?
  • We regularly go for walks with Munchie in her BabyBojorn, how will this work? - I don't think it will
  • What about our planned holidays?  Can a baby travel on a plane when their leg is in a cast? What about when she has to wear her boots, how will she fit comfortably on my knee, will they even allow her on the plane?
  • Is it viable to even consider taking her on holiday until this is over?
  • When will it be over?
  • How will she cope with it all, how will we cope with it?
  • What about going to nursery?  What about going to the creche? None of which she has done yet but can she still go?  Will I want her to go?
  • Will I be able to go back to work?
  • Will I overcome this burning desire to hide her away? - I have to as its not fair on her to be stuck in all the time.
  • Will people stare?  They stare and smile for all the right reasons at the moment but will this change? Will they think I've hurt her? 

And it goes on and on and on......
 
The Aerosmith song, Amazing ,keeps going around in my head and I can't stop singing the same few lines over and over again.....  

Life's a journey, not a destination

And I just can't tell just what tomorrow brings

 I don't want tomorrow to come, I want the clock to stop, I want the world to stand still, but that's not going to happen is it. This isn't what we planned, this isn't how it was meant to be, but it is what it is and its going to be the hardest journey we've ever been on.

Forewarned

I write this as my beautiful girl sleeps peacefully in her cot blissfully unaware of what faces her tomorrow, the coming months and even years. There's an old saying "to be forewarned is to be forearmed" but in my case I'm not so sure.

After a weekend of debate between me and my husband, a little bit of putting our heads in the sand and a lot of tears. We contacted a leading talipes specialist at Chelsea and Westminster hospital to seek a second opinion. On the recommendation of STEPS (a national charity supporting children and adults affected by a lower limb condition such as talipes www.steps-charity.org.uk) we emailed the Consultant a history of Munchie's treatment so far plus a number of photographs of her foot. We heard back within a few hours, which was amazing. However it wasn't the news we wanted to hear, the Consultant agreed with the treatment recommended last week and gave us more information about the cast and what was likely to lay ahead. The what is likely to lay ahead is something I/we are truly struggling with, I thought my world turned upside down when I found out about the cast but this, this has blown my mind and has brought my world crashing down around me.

The Consultant last week, briefly mentioned that after the casts, Munchie may require boots and a bar. But I was so stuck on the cast at the time that this information didn't really sink in. After speaking with the second Consultant and doing a lot of research, the boots and bar are a critical part of treating talipes but they are also the hardest part of the treatment. They have to be worn 23 hours out of 24 for a minimum of 12 weeks then at night thereafter for anywhere between 1 to 5 years depending on the severity of the condition. If the boots aren't worn the the foot will relapse and the whole cycle needs to start again.

My instinct is to protect my girl, to hide her away from what lies ahead but what kind of Mum would that make me? I have to think long term, I have to think of my daughter's future not the here and now. My little girl is 6 months old, she won't remember the next few months but she will remember if her foot doesn't work as it should. So I have to be strong, keep my fears away from my little one, encourage her, hold her, love her and most of all get her through tomorrow and beyond without losing the smiley, happy, inquisitive baby we are so lucky to have.

Thursday 20 June 2013

Unexpected

I've truly loved the last few weeks, everything seemed to fall into place. Munchie was sleeping better and longer, she had become so much fun, even learning to sit up and I felt confident as a mum for the first time I could remember. We went on our first family holiday and she was an absolute star, even despite our unexpected extra week's stay due to the French air traffic controllers strike.

We've been back in the UK for a day and I'm in a complete spin. Munchie was born with positional talipes of both feet, with her left foot being the one of concern. This issue, problem, condition (it was given a few names by those who saw her) wasn't picked up on any of the scans and we were lead to believe that it would correct itself in time but as a procortion were referred to the Child Debelopment Centre (CDC) for physio.

The physio was very light and involved stretching her foot into the correct position, something which I had to do daily and as often as possible.  We'd been back and forth to the CDC since Munchie was 5 weeks old but with no real improvement the physio referred us to see a pedeatric consultant. We saw the consultant at 12 weeks who informed us that we had nothing to worry about and that her foot would correct itself and to continue with the physio. He requested we return in 3 months for a follow up appointment.

Well that appointment was today, after a two hour wait in a very hot and stuffy waiting room, we this time saw the lead consultant. Who, after a very quick examination of her foot informed me that the best option will be a cast to hold Munchies foot in place.  This would be a full leg cast which would need replacing each week and he couldn't say how long this would last. I'm normally a very questioning person, not scared of asking questions but I felt like I'd been hit with a sledge hammer and whilst trying to hold back the tears and keep a level tone all I could ask was whats changed and
what happens now. She's grown he informed me and the what happens now is that next Wednesday my beautiful, funny, smiley, active little girl gets a full leg cast.

I know this is for the greater good and that the most important thing is for my little girl to have the best foot she can but I can't stop getting upset and feeling that its my fault. I can't sleep thinking about it, for kicking myself for not asking more questions, wondering what if I'd done more physio and imagining what next Wednesday is going to bring. The result of which has led me to write this post, my first ever blog post. I don't think anyone is going to read it other than me but getting it down and out of my head will hopefully help me prepear for the journey ahead.