Well - its been some time since I've updated my blog. It has been quite a month with Dad being unwell - full of up's and down's, a real roller coaster ride. But that's another story and perhaps some day, I'll tell it but not now.
Tália has been on her gluten and dairy free diet for a month now and so far so good. As a mum its hard to tell whether its the diet working or if Tália is naturally just growing up but I have to say that a few changes have been noted. Firstly, she seems much happier in physio and speech - she no longer cries so much and seems to be genuinely excited and happy. Secondly, she seems to be sturdier on her feet - not walking but standing. Thirdly, she seems to be communicating better - a few more sounds and just an overall awareness and fourthly she seems taller. So all in all a positive step forwards.
We have made the decision to send her to nursery 3 times a week as of January. I have had this itch again that has made me feel as though things need to move forwards again - we cannot stay stuck in our ways. I feel that interaction with other babies and toddlers is what Tali needs and that will give her the inspiration to walk and talk.
I'll find it hard to leave heras I just adore being with her but I need to help her to adapt to society and expose her a bit to the real world. The toddler group has opened my eyes and I have seen how happy she is there. Also in her physio sessions in San Pedro, her cousin, Indy has been coming with us and now Tali loves it - she actually shows off a little to her baby cousin!!
We have also finally received an appointment for a muscle biopsy and are heading for Barcelona mid-Jan. So I hope to continue posting through the next weeks.....
2 comments:
Have you looked into growth hormone deficiency or Russell Silver syndrome? GHD will cause low muscle tone in small children.
Thank you for your help - we asked about GHD but did not get a clear answer: Drs did say though that if by age 4 she has not caught up, they will consider giving her growth hormone. Russell Silver has been mentioned on various occasions and yesterday one medical team suggested that she may have some kind of dwarfism.
The drs are divided - one lot think Talia has a mitochondrial illness and the other are sure she has some kind of dwarfism.
I asked whether we could test to see whether she had Russell Silver but because she seems fine generally, they feel we should just ´wait and see´ - easier said than done.
The muscle biopsy should hopefully help us to decide which way to go and in the meantime I am researching Russell Silver and other forms of dwarfism. So far the there are many similarities - even the descriptions of pregnancies seem to match mine.
Thank you so much for your comment - of you have any more ideas or thoughts or now any specialists who may be able to help with diagnosis, please let me know.
Thank you
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