Friday, 17 July 2009

School's out!

Hurrah! It's the summer holidays. No more early mornings, no more uniforms, lunchboxes, homework etc. And we get to be TOGETHER! 6 lovely weeks of it :O)

Today our lovely health visitor came for the very last time. We have been blessed to have this lady for the past 5 and a half months. She's been so supportive through everything we've been through; she's encouraged us to continue breastfeeding when Hope's weight has been so low it's been off the charts, and when giving a bottle at points seemed the easier option, she's come round to weigh Hope and measure her head circumference weekly, then fortnightly, she's made tons of phone calls on our behalf, and listened to my concerns. And what's more important, is all this has been done at home. Anyone else reading this who has a special needs child will understand why I hate baby clinic, and why it is difficult to be around 'normal' babies.

Hope is perfect to me, and when we are at home, I don't see her as anything other than her cute lil self who I wouldn't change for the world. But it's undeniably hard seeing other babies, the same age doing the normal stuff that everyone just takes for granted. I hate it when people look at her and ask how old she is, expecting me to say she's a few weeks old, when actually she's nearly 6 months old, yet size wise and developmentally she's nowhere near.

But our health visitor understood this was an issue, and despite my offers to attend the dreaded clinic, always came to us.

The last few times she had seen Hope, Hope wasn't herself at all. She was an empty shell almost, the seizures taking over her lil personality and regressing her back to a newborn state.

Hope had been fab all morning; full of laughs and smiles. So I was willing her to stay awake so that the health visitor could see how much better she was now we were controlling the seizures.

Hope wasn't at her most cheery, but the health visitor was impressed with her progress, and couldn't believe how much H had grown up since she last saw her (a fortnight ago), and commented on her improved head control.

She also thought Hope was looking chubby. Something I don't think she or I ever imagined. Hope's weight has been an issue ever since she arrived; weighing in at a boney 4lbs 14oz at 37 weeks gestation, then dropping to 4lbs 8oz and taking over a month to even regain her birth weight. For 5 whole months we've been trying to get Hope's weight, not within the normal range, but ONTO the chart. She's always been below the 0.4th centile. Until a couple of weeks ago that is, when to our amazement Hope made it onto the 0.4th line. Well today, the lil chubber monster weighs 12lbs 4oz (that's 5.5 kg), admitedly that's not huge for a nearly 6 month old baby, but she's actually made it to the 2nd percentile line! :O)

Hope bought a gift for the lovely health visitor, and we wrote her a card. I put the blog address in so she can keep up to date on her. So if you are reading ...Hello, and thank you again...For everything!

Auntie Mary came round too today, with some naughty but nice cakes. She was also surprised at hpw alert and happy Hope was.

I feel like although Hope is way behind, we are back on the track again, and can start building again. At 8 weeks, Hope was acting like an 8 week old baby, but then something happened, and she wasn't. She wasn't even turning her head to sound, nevermind smiling, and rolling. Then the nasty seizure monster showed up and our days were spend counting seizures and worrying, then once she was diagnosed, we started the meds which knocked her out so much, but now, she's tolerating the meds, and probably almost back to where we were before it all starting going wrong. So hopefully, we can continue to progress from here. But for me, the one thing I wished for, was that Hope could smile; to show me she's happy, and that she knows she is loved. Her smile melts my heart, and makes me a very happy proud Mummy.

1 comment:

  1. Hope has became very special to me over the last few weeks and our connection with our Sunshines, love seein her pictures with that beautiful big smile on her face, n to read that she is improvin just makes my day, much love to you all n big cuddles for Hope, hope you all enjoy the holidays xx
    p.s Sunshine does have a name ;o) he's had 1 since just before we found out his CDH xxx