Life in the slow lane!

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Following Dixie’s hospital discharge in early March, we collected a couple of professionals to add to our ever growing list.

Her surgeon. Although we wouldn’t have regular appointments, we were due to see her as an out patient three months later. The plan was also to remove the temporary gastrostomy that had been placed during surgery as an anchor to her stomach.

We also picked up a lovely community nurse. Her role was to support us in the home with the up keep of the gastrostomy button,  to keep an eye on her incision site and monitor her weight and general well being. Another temporary support, but one I welcomed. I’m squeamish. And a bit pathetic  with all things woundy, bleedy and gooey.

The gastrostomy site needed quite a bit of looking after in the beginning. And as an added surgery extra that I hadn’t expected, I found it difficult to touch and clean. But I had to. And it did get easier. The community nurse was great to have at the end of the phone when I was being a neurotic mummy.

Within a few weeks, Dixie had really begun to pick up in herself. Although she still felt very limp and weak, and most of the strength she had been building up over the previous months was slipping away. She had started to roll again. Unfortunately this in itself caused issue following surgery. Her wound opened from the constant rubbing on her gastrostomy button, and became sore and bled. In the end I had to place a cushion at her side to prevent her rolling.

You can only  imagine how hard this was for me. Here she was, going at it guns blazing and yet I couldn’t let her. She needed that time to recoup. To recover and to heal. But no matter what I told myself, it was a huuuuge step backwards. Huge! I felt powerless.

A couple more weeks passed and I needed to get some power back. She was almost 10 months old by now and her gross motor skills were hugely delayed. This worried me. And made me increasingly anxious.

So I did the only thing I could think. I chased appointments with her developmental team. I chased physio – which at this point we still hadn’t had, despite being told it would begin in January. I chased Mrs OT and Play. And I chased Speech.

I know it sounds mad considering she had just had major abdominal surgery, but I felt helpless. I felt useless. I couldn’t just let the rest of the muscles deteriorate.

I’ve previously mentioned throughout her hospital ordeal, she had picked up a new skill. Holding objects and generally using her hands more proficiently. This was a big step forward, and one I wanted to develop.

My chasing paid off. Mostly. Mrs OT and play came out within a couple of weeks and were mighty impressed with Dixie’s new skill. They left me lots of positive feedback and advice.

Physio was another story. Another blog!!

What’s also important to mention about March is its Trisomy awareness month. With it being the third month, trisomy being a third chromosome.

It was also rather timely that my sister and her friend Laura had offered to run 10K for a newly established charity. The T9M Trust. And even more so that this run fell on the 10th March, one day after trisomy 9 awareness day, and three days after Dixies hospital discharge.

I was thrilled. Being completely unfit myself and with no extra time to get fit, it felt wonderful that they had thought of us. We of course went to town, in the sense of having special T-shirts made up and going along to show our support. The whole family, including the grandparents as papa L was still with us from Scotland.

And they did brilliant, especially as it had only been my sister second 10k run and she was a bit of a newbie runner.

This run had also become a bit of a important part of our story. It was this reason that I had found the courage to make Dixie’s diagnosis public. My sister had come up with the idea of the run the previous December. I had waited as long as possible before ‘outing’ Dixie in mid January.

It was a big step. It was a scary step. But the response to my ‘big’ news was actually pretty disappointing. I’d built myself up to spilling the beans and hardly anyone even acknowledged it. Despite this though, sponsorship came flooding in.

Over £2000 in the end. Including a huge donation and the sponsorship of our T-shirts from Daddy L’s employer.

So it was worth it. It was worth telling the world about Dixies extra chromosome. And it felt like a huge weight was off my shoulders 🙂

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One comment

  1. Steve Cripwell · November 25, 2015

    Reblogged this on My Write and commented:
    More from my gorgeous daughter’s struggle with the little known chromosome inbalance Trisomy9

    Like

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