Serenity turns 2 in July, she has made so much improvements and progress with her milestones. She has been discharged from the Community Nurses and the community dietician as she is now officially of all tubes! We are now on the waiting list for a Paediatric Dietician.

In addition to her other consultants we are now seeing a Physiotherapist and a Speech and Language therapist, we have been on the waiting list since we moved last May. The Physiotherapist works with Serenity on achieving her physical milestones. She gives me and the nursery exercise plans to help encourage certain movement and muscles. Serenity can now crawl! We are working on improving crawling and standing. The Speech and language therapist is working on Serenity self feeding, food textures and speech.

I’m so happy with Serenity’s progress and I am happy with the consultants she has on board. We had an issue a while back as Serenity had lost some weight due to her coming of her high calorie milk too early. She is slowly putting it back on but its been very difficult. Serenity does have snacks now and I am less strict with her diet so she could gain the weight back. She still has healthy meals and we avoid high fat foods but her weight gain is important for growth. It feels as though she eats so much more than the regular child to gain a tiny amount of weight. Maybe growth hormone affects metabolism?

I would encourage your consultants to only measure her on a Prader-Willi Growth Chart too. Serenity was always compared against the ‘normal’ child, and this isn’t right in my opinion as the growth and milestones are just so different.

Serenity can say a lot more sounds and she is more interested in toys, she can wave goodbye and she can say a few words. She recognises bananas as ‘narnas’ and she can eat the solid texture herself without it being blended.

Serenity is still on the same dose of Growth Hormone as they do a calculation based on her weight and she still has this every day. The injection is part of the routine and it doesn’t bother her at all. We see the Endocrinologist roughly every 6 months.

The consultants Serenity now has just before 2 are:

Physiotherapist, Speech and Language Therapist, Ophthalmology, Orthopaedics, waiting list for Paediatric Dentist as we have been advised her condition affects the teeth and bone density, Endocrinologist, Occupational Therapist, Paediatrician, Health Visitor, GP and Sciensus Homecare Group. We are also on a waiting list for Paediatric Dietician

Even though sometimes it can be overwhelming to manage the appointments, it is lovely how Serenity gets on with every one of them. They are all so friendly and they love my daughter and she is lucky to grow up with these people that all have an interest in her health.