Saturday, 24 October 2009

Real progress!

Hope has been on top form the last few days. She's even more of a joy! The seizures *touch wood* are almost non existent (just 4 yesterday, none the day before and none yet today).
And she's really coming along.

I was looking after my lil niece on Wednesday, and with it being half term felt I needed to get them all out of the house for the day (for my sanity). So we went to 'jolly roger's (soft play centre). I didn't for a second think Hope would care where we were or enjoy this new place. I was wrong!
We all went on the bouncy castle, and Hope absolutely loved it. She was shouting her head off and making her funny woof laughs. Then..........................
She lifted her left arm...... Turned into me......and did a huge smile......she HUGGED me! My heart felt like it could burst! Then she just kept doing it again and again and she was very pleased with herself. And this was not my imagination ; I have witnesses!

Later, max insisted on carting her about;under tunnels, up things, down slides.... I could see people looking. I think they probably along the lines of 'omg that terrible mother is letting that little boy drag that little baby all over the place' because Hope looks a lot younger than she is. Anyway, I'm well past caring what other people think.

That same day, we had a fiasco with boots losing the Honkey meds :0( which led to trying every pharmacy in Swindon and beyond to try and get her epilespy drugs, and then calling the childrens' unit who said to bring her in. They were going to admit her (because she is soooo dependant on these drugs) but fortunately someone was smart enough to track down a stronger adult tablet of her meds which I was then able to dilute. Phew!
In bed that same night, she showed me that the hug session earlier was not a one off :0)

Thursday we went to Koalas. Jordan and max came. They had a great time making and playing with playdough. I think it also did them good to see that Hope isn't the only disabled child.
Hope's playworkerd were impressed with her alertness and smiles (she usually sleeps during these sessions). We also had an appointment to see Hope's visual impairment teacher. She's a really lovely lady! She hadn't seen Hope for 3 months and said she could see a massive improvment ;0) hope does Now look in the direction of sound, and sometimes looks at things, especially lights when she's in the dark. Hope is just begining to be able to find lights when they are moved (though she's not able to 'track').

Hope also showed that her head control is improving. She can briefly raise her head whilst laid on her tummy!

Last night.... I'm still in shock about it to be honest... She slept through the night!!!!!! At best, Hope has only ever slept 3-4 hours. Many nights she wakes hourly. But last night she went 8 hours! I woke a couple of times to check on her, and this morning I was worried there was something wrong. I'm sure it's a fluke. I hope it's the start of things to come. But I won't hold my breath!

These may seem like teensy achievements. I know in contrast to the norm, they are... But she's not the norm.... She's extra special, and I'm so very proud of her!

I'll leave you with a poem emailed to me by a lovely friend :

A handicapped child has a special life,
But with lots of hard work,
And plenty of strife.
She may not walk or talk or play,
In her own world she's locked away.
These children are sent from heaven above,
They are angels on Earth for us to love.
Their time on earth may only be short,
But there's lessons from them we value being taught!

Don't turn your back or walk away,
'look at that poor child' I hear you say.
'she is not poor!' I want to yell,
She's rich in love and doing well.
This poem comes from my heart,
This child has made my heart tear apart,
But her smiling face, I just have to picture...
A precious daughter, who makes lives so much richer!!!!!

Need I say more???



  1. What a lovely day you've had with Hope. It sounds like she is doing really well and you are doing a fantastic job as her mummy, she really is rich in love and very lucky x
    Love Caz (Angel Cayden's Mummy) x

  2. Hi Caroline
    Just read Hope's update - u know she is such a special little lady who belongs to SUCH a special mummy, I really hope that she will continue to make progress at her own pace. Love to u all
    Marion xxx

  3. Hope is truly amazing. I'm so glad she gave you some lovely cuddles. Kate xxx

  4. Amazing! Loving the progress Hope is making and so pleased to read about the hugs - my heart melted! Looks like you are all having a fab Half Term. I know with the sleeping through the night thing it really is one step forward, two back. James has never needed much sleep (less than me even now) so I sympathise. But this is a great sign that she can do it now and she will get there sometime soon. Maybe go to Jolly Rogers more - wear her out ;0)
    Lots of love and hugs to you all, my spiritual relatives.
    Rachel & boys xxxxxx