We had our first appointment with the dietician in our new house, we waited 6 months for this appointment and it didn’t particularly go well. Serenity’s weight has plateaued, I’m not sure if this is something to do with her condition or her nutrition. The dietician’s advice I didn’t really agree with, but I think this is because I may not have gotten the specialist advice I needed in the first place so it has conflicted. This is so confusing and so stressful. I have waited over 6 months and some consultants I still haven’t seen, I understand there are waiting lists but we cant help feel a little bit on our own.

Following that appointment I will re-introduce some of her big milk feeds and she will see a Paediatrician to see if there is anything else happening for her not to gain weight. I have such a lack of knowledge but I think its just because she hasn’t started her Growth Hormone yet, or maybe she came of her Infantrini too quickly and perhaps she could of benefited being on high calorie milk at the same time I started weaning.

I have been chasing the hospital, the GP and the Homecare Group for the hormones as its taken so long to sort the prescriptions out. Our first delivery should come next week which includes the Omnitrope Hormone and the injection device. The nurses should come round to show me how to administer the dose and the medication. I believe she will need this every day till she’s around 13/14, then till she’s around 18 will need to be on a Hormone Replacement Therapy instead of Growth Hormone.

Its really overwhelming starting this new medication and journey with Serenity. Its such a specialist thing and will help her so much but I’m worried about any side affects and of course I’m worried about actually injecting her everyday. I know there is such a strain on the NHS and we are blessed and grateful to have access to consultants and this kind of medication, but it has been difficult with the lack of input from professional’s.

I think a lesson to everyone is to chase their consultants and be on top of it. We have a large white board calendar in our kitchen where I write all of Serenity’s appointments and the people I haven’t heard of in a while. It doesn’t help we moved house but I think I should of chased people more. The amount of times I have been told ‘you should have got a letter’ and I haven’t or; ‘you’ve been lost on our system, its crashed,’ – these things are very frustrating.

Its a really strange feeling and I think I feel more lonely with it all now then I ever did before. I worry about the future and selfishly, I feel like I’ve really lost my identity because I am putting so much time into not only being a mom, but a nurse, a dietician, a carer, a Physio etc whilst working from home full time.