Hello friends – it has been a while…

 

Mia is now three and a half and well-settled into her role as big sister. At 11 months, Finn is already considerably heavier, stronger and more mobile than his ‘big’ sister –but they get on like a house on fire and she still lets him know who’s boss!

 

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On the medical front, all is blessedly quiet. The time between viruses seems to be lengthening, and Mia’s cocktail of choice (Nitrazepam on the rocks with a Keppra chaser) has thankfully kept the seizure monster at bay for over 18 months. We’ve got a follow-up appointment with the endocrinologist in the coming weeks to agree whether or not to start Mia on growth hormone, but we have a bit of research to do before making that call.

 

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Mia continues to eat mainly smooth foods and meal times remain a fairly passive experience for her. We have been attending a feeding clinic and had a couple of sessions with the feeding psychologist, which has given both Vicki and me a fresh outlook and the tools to approach Mia’s feeding pragmatically, safe in the knowledge that she’s getting all the sustenance and nutrition she needs.

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Mia’s receptive vocabulary is growing and she will proudly touch her tummy, head and toes to show she knows these parts of her body. We play choosing ‘games’, using laminated photo cards we have made, and Mia will readily choose between two activities, toys, foods or people. We try to incorporate Makaton sign language into our daily routine and Mia seems to get the idea, although she’s still working hard on the fine motor skills to reciprocate consistently.

 

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Mia recently started horse riding with the local Riding for the Disabled group and seems to be a natural. Her posture and oneness with the ponies is a joy to witness, and the squeals of delight and jubilant hand clapping make her enjoyment altogether unambiguous!

 

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6 Responses to Mia – Summer 2014

  1. letty says:

    I think she is the cutest!!! I love the black and white picture with her bib/cape on backwards. Congrats on Finn in case I haven’t in the past….we have a Noah, going on 8 months. I think them having siblings helps. Just want to say “Hey” and give thumbs up on Mia’s accomplishments.

  2. Ross says:

    Thanks Letty – good to hear from you. Congrats on Noah too – it’s fun but hard work with two, eh?! Great to read that Nathaniel is crawling, you’ll need eyes in the back of your head with both of them on the move! 🙂

  3. Anitra says:

    Mia is so beautiful! What an awesome series of photos, too. She looks like a real natural on horseback. What a cool experience! We’ll have to look into that for Elsa.

  4. Shirley Bidnick says:

    Finn is as adorable as his sweet sister and your photography is stunning as usual. It is good to hear about Mia’s positive health report. I hope it continues. When Rochelle was young, the possibility of using growth hormone came up once. I have always opted for the least amount of intervention or treatments. There are so many unknowns with this syndrome, especially as the children become adults, it seems prudent to me not to mess with thing. At age 17 Rochelle developed high triglycerides and arthritis, and in her 20’s her kidney problems got worse. I think adding growth hormone to these problems would have made things worse. All the children are different, but this is our experience.

  5. Christine says:

    Ross, how is Mia going? I miss the beautiful little girl!!
    We have a similar constellation (Elsa 3 with WHS and Theo 1) and I would love to read from you again!!!!!
    Greetings from Germany, Christine

  6. Ross says:

    Hi Christine, Mia is doing really well – thanks for asking. Your comment spurred me on to post a long-overdue update.

    http://wolfhirschhorn.org/2016/07/mia-rose/it-has-been-a-while/

    Hope all is well with you and yours!

    Ross

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