Hello,

It’s been a year since the last post so just a quick update. She is now 4.

Since she started independently walking at the time of last year’s post she has come on strong in that regard. She will struggle with deep steps and has to shuffle bum down stairs and steps but can happily walk on level and inclines for a long time. We did a 4 mile hour walk just this weekend gone and she coped well – it is a level-ish walk that I do with the dog and which, at diagnosis, I never thought that Esme would be able to join me on but she was able to cope admirably well. She enjoys long walks to the beach, park and other routes now. We had to pick her up a few times as she was literally falling asleep by the end. We also needed to constantly direct her attention away from brambles, nettle bushes and slopes but she was fine.

Illnesses have been largely uneventful. Her increased mobility has enabled her to walk off coughs and colds. We took a months unpaid leave in January and headed to Portugal (Algarve) for the month where we are lucky in that the family has an appartment. The climate (similar to Southern California – more sun hours in fact) was very beneficial and no colds or viruses were endured for the whole month. This helped Esme greatly as she ate exceptionally well without the vomiting accompanying previous winter’s colds and flus and enabled her to put weight on well. She was down the beach everyday watching me surf and running/paddling and getting her sun fix.

She eats pretty well now. Soft sandwiches, Chips (french fries), mash potato and gravy, chocolate, toast, porridge, satsumas. Mum has just put her on a lactose free diet to reduce excessive drooling that she had and that appears to be working well though all teeth are through so that could be a competing reason.

She has urinated a few times on the potty copying her one year younger sister who is now fully toilet trained but progress is slow. To be fair we are a little lazy in this regard. She has been ‘trained’ for four years re eating and walking so we are just lazy and enjoying our time at the moment rather than the constant, unabating training that went on in the previous years. The same applies to speech. She will say mam, dad, there, ipad, and other words. She tries more but is not yet clear. She can pick up signs and is a quick learner though we are lazy at this time as her receptive language is exceptional understanding all we say (example, get your ball, doll, green cup, tooth brush, pyjamas, can you put this plate in the sink or these clothes in the laundry)

We had just one hospitalisation this year and a couple of incidents of Croup where a steroid was needed. The hospitalisation followed general anaesthetic for elective surgery to remove a preauricular skin tag on her ear. It seems she was developing croup again which the anaesthetic tube pushed down further causing airway edema with the airway reducing to 1mm from 5mm. She was in for 10 days with 7 in the intensive care ward where she was intubated (for the first time in her life) and sedated before bouncing back to her normal self after ten days.

I will post this now so as not to lose the text and add some pictures shortly.

Sean

 

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