My life so far.

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Hey everyone. 

My darling daughter was born at 38+2, but throughout the whole pregnancy she was deemed high risk, due to being so small with no diagnosis. This involved many appointments for lots of monitoring. The Dr's noticed her right kidney was larger than the left in the womb, but said they'd look into it further once born. 

She was delivered via c-section, as they didnt know how well either of us would cope with a natural birth. She spent the next 2 weeks in the special care nursery trying to put on weight. She was born 4lb 4oz, 2020g. 40 cm long. 

At 1 month old i was gifted a voucher for plaster moulds to be done and framed, so we redeemed it, and the lady came around and did both hands and both feet. Later that night she sent me a photo saying "i think your daughters feet are different sized... however one could just be tensed". I couldnt believe she could say such a thing about my adorable, precious 1 month old. The nurse was due for a visit the next day, so i told her about the message i received.  She stripped scarlett off, and looked at her legs. Thats when we saw both legs were different thicknesses also. She got me a urgent appointment at the hospital with a paediatrician. When we went to the appointment he looked at all her limbs and noticed she has body assymetry.  Instantly told me she could have Russell-Silver Syndrome,  or something else. But only a blood test could confirm completely. 

After waiting for the genetics clinic to look at her bloods, 5months old now, we went in to see the paediatrician again along with the geneticist.  I was prepared for him to tell me anything. (I had been on google and seen cancers and tumors can be linked) he straight up confirmed no cancers or tumors should be linked. But she definitely has RSS. We weren't aware of all the appointments that were to come after that. We were told she would be tiny, and have body assymetry, meaning she may have troubles walking, as her legs are different lengths. Feeding difficulties are also lonked due to them having such small stomachs. 

Fast forward to 3 years old, and shes now 8.7kg, and 78cm on the left side (shorter side). We've tried for growth hormone recently, but her bone age isnt old enough yet, so we'll try again in 6 months. The growth hormone, can potentially boost her predicted height from 140cm to 155cm. It can also delay the chance of precocious puberty  (i heard from a family in america, their daughter started puberty at 5yrs old), meaning instead of breast development starting at 5, it can delay it to 10-12years old. Huge plus for us, as we dont want periods etc just when shes due to start school. 

Scarlett had been very independent and very isolated with being an only child, but since sending her to day care for the last 12 months, shes come out of her shell, is playing with other kids, her speech has progressed heaps. Now we're looking at assistive steps for day care where she struggles to reach the activities that the other kids can do,. Such as hand washing, painting, sotting at the table for snack time, etc. 

If anyone did want to contact me, im more than happy to chat, as i love networking with like families, theres so many different affects with each child, which makes them so unique also. 

Thanks for reading! Naomi and Scarlett