9 months in, 10 months out

Immy is 10 months old!

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She’s now been in the outside world for longer then she was in my tummy, it’s quite appropriate then that she has finally doubled her birth weight! Woop woop!. She’s also hit 6kg (13lbs 3oz), which might sound tiny for a 10 month old but is a huge deal for our little girl.

In other news she’s got 2 teeth, and her hair is growing into a cute mohican style. She’s also rolling confidently both front to back and back to front and can even roll several times in a row across the floor when the mood takes her.

Unfortunately we have also seen an increase in seizures recently, we don’t know if it’s because she’s growing and a dose increase in her meds will solve it or if the seizures are just becoming resistant to her current anti epileptic medicine. I really hope not.

We also struggled recently with an increase in her reflux meaning she was vomiting at every feed. It was messy, upsetting and a nightmare for her weight gain so we’ve now started her on a protein pump inhibitor medication as well which seems to be helping alot.

One parent on a forum recently described parenting a child like Immy as a constant triaging of symptoms to assess which is most pressing at the moment. It’s so true, reflux, epilepsy, weight gain (or lack of it) eye sight, ptosis, development, they have all sat in peak position at sometime or another and our priorities will keep changing as as she grows up.

We are pleased we finally have a date for her operation to lift her eyelids at Great Ormond Street in the middle of September which is great news and we are hopeful that her eyesight which is currently about the level of a new born will improve quicker once the operation is done.

On the non medical side of life, last week we went to the New Forest on holiday. My husband booked it back when I was still in a fog from Imogens diagnosis and the idea of a holiday seemed ridiculous as we battled seizures and visited hospitals multiple times a week. But I am so glad he had the positivity and foresight as it was such a lovely break, a great chance to concentrate on fun activities for our Felix before he starts school and a chance to let Immy have some firsts as well. From her first theme park ride (a sedate boat ride around fairytale models) to her first touch of a horse (her daddy has promised to buy her one when she learns to walk – she’s got him wrapped around her little finger already) and even her first bath in a sink as our lodge only had a shower! It’s lovely to see her personality developing.

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It’s amazing how Imogens diagnosis has opened our minds and our hearts.We spoke to several people on holiday who we probably wouldn’t have had reason to speak to before Imogen.  Like the little boy with Down Syndrome who taught me the Makaton sign for ‘cool’ (as in cool dude) and the family with an adult son with disabilities enjoying a day out who cooed over Imogen, or the father who commented how much Imogen in her glasses reminded him of his son who has a visual impairment as a baby. Its like a door has opened to a world we didn’t know existed before, but now we are a part of, and the community is full of incredible people. It also made us look at places in different ways, the theme park toilets that had no adult changing facilities, how monkey world had incredible wheel chair access and sensory statues for visually impaired visitors to feel what a monkey’s face is like as well as wheel chair swings. Things we have no need for at the moment but I now notice for the families who do need these things.

Imogen is making me see the world differently, and making me want to change the world for the better. Not just for her but for all of the families with little warriors out there.

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