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It has been a while... - wolfhirschhorn.org

Can it really be 2 years since I last posted here? I guess so!

Well, a few of you have messaged me asking for a Mia update, so here are a few pics from the past while…

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Mia turned 5 in January and started school in August last year, where she has been doing great. We are incredibly lucky to live very close to an amazingly nurturing and inclusive special needs school where they mould everything they do around the kids’ individual needs and goals. She also attends the local ‘mainstream’ school for one morning a week, where she is the centre of attention and has made some really solid friendships with kids from our immediate neighbourhood.

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Mia’s mobility has really been coming on too – she can crawl, pull herself up to standing and, sometimes reluctantly, use her walking frame to get about on smooth surfaces.

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She also has a pretty cool wheelchair that she uses at school and when we’re out and about….

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Mia’s epilepsy remains well controlled with Keppra and Nitrazepam and we haven’t had any unscheduled hospital trips for over a year. She’s still getting growth hormone daily, which seems to be doing its job in bulking her up and doesn’t appear to be having any side effects. Mia’s language is still very limited but she understands a lot and, as can be seen below, has no problem in getting her point across!

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There’s really not a lot more to say, other than Mia is the sweetest, most loving little girl we could wish to have in our lives – never happier than when engaging with people and the world around her.

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I’ll try not to leave it so long next time!

 

 

6 Responses to It has been a while…

  1. Kevin says:

    Ross, she’s beautiful. Thanks for the update!

  2. Christine says:

    Oh yes!!! Very happy to see the update of your wonderful Mia! Thanx!! Greetings from Germany!!!

  3. Ross says:

    Danke schön von Schottland, Christine! 🙂

  4. Letty says:

    So glad to hear! I haven’t posted anything in a while either…time flies, that’s for sure. She lines great.

  5. Anitra says:

    What awesome pictures. Thank you Ross for the round up! I can relate so much with what you are saying. With Elsa (4.5 years), she’s pretty stable now, medically, so we are focused primarily on school, mobility and growing her communication and motor skills. She is gorgeous. Loved the school uniform photo. Big hugs to Mia!

  6. Shirley Bidnick says:

    Thank you for sharing Mia’s progress with us. I have been wondering about her and hoping all is well. She is as sweet and lovely as ever and she is doing amazing things, such as playing ‘house’ in her little kitchen and going for a walk with her daddy and baby brother. She looks so grown up in her school uniform. This is the first time I have heard of a child with WHS receiving growth hormone. Is this treatment commonly used in Scotland? Mia does appear to be frail in the photos. I cannot remember if she is tube fed or not. These photos, as usual, take my breath away. They capture Mia’s beautiful spirit. It is so good of you to share her with us.

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