In my last blog post I discussed how we were trying to get Camille to interact with her peers a bit more. We’d invited friends from school over with little success as Lucia, the bigger sister, is much more outgoing and to a certain extent, controlling of the situation. We’ve kept going, persisting with the after school visits and although the same pattern occurs on every occasion, there are glimmers of hope from time to time. Camille is showing that she may want to play with the other children and not resort back to doing craft like she has done in the past. The challenge is more now to do with the other children (including Lucia and Camille) to find a common interest to all want to play together happily for a while. I think this is a normal challenge to experience with children of Camille’s age; to be honest, with Lucia I think we missed the whole of that development period and our terms of reference are somewhat blurred.

 

It has been reassuring that a number of other parents are experiencing similar issues with their children of Camille’s age. Perhaps we are looking at these challenges to specifically to Camille and her history rather than just the age group. As I’ve mentioned before, the mobility issues that Camille has means that the common areas of interest are a little more limited than with other children and that is probably the biggest barrier she faces. In time she will find her own interests and pockets of peers that share similar interests that she will become friends with; it’s just the period in between then and now and making sure that Camille’s self-esteem is kept at a healthy level.

 

The glimmers of hope are most prevalent at the gym we go to near our house. The restaurant/bar area has a children’s play room that has a soft play, climbing area. Camille will quite happily take herself off to this room and play with the other children in an environment that suits them all. I’m sure this is the key. I’m sure we’re doing the right things and I think it’s important to show our appreciation to the parents of some of the other children for supporting us with this process.

 

The other main challenge I discussed a couple of weeks ago was Camille’s eating. The diet of MilkyBars was becoming a big problem as Camille’s weight fell to an alarming level. Little or no discussion has been had with medical professionals on how best to deal with Camille’s psychological issues with food; in fact the last word that Hayley had from Addenbrooke’s Hospital on the matter was for someone to suggest that they put a peg into her stomach. A peg is basically a means to deliver food directly into her stomach through a tube that goes into her stomach. Now, does that seem like a sensible way to encourage Camille to eat? It’s not like she can’t eat, she just chooses not to. It does frustrate me that a diagnosis or treatment plan is offered up without taking the time and effort to explore the cause of the issues. I could go on; I won’t.

 

Anyway, the help we so badly needed came from another parent of a little boy who has been through a very similar situation to Camille. Christine composed an e-mail to Hayley detailing exactly what she went through and did to get her son eating again. The level of information that she gave us was beyond the call of duty and straight away, we’ve been able to put some of these tips into action. It’s a struggle and time consuming, but we’re getting there. As Hayley so proudly published on Facebook, “Camille has eaten a ham sandwich, spaghetti hoops and some toast, trust me, after a year of milky bars yoghurts, this is a massive, HUGE, enormous step forward. Thank you Christine”.

 

Camille is eating quite a bit at the moment and it’s already beginning to show; her ribs are beginning to disappear behind a wall of tissue and her stomach is finally looking defined and content. She hasn’t started the growth hormones yet as the delivery was delayed, but you feel that perhaps Camille’s physicality will just get better and better if we can keep this up. Don’t worry, of course we can keep it up, after a few weeks it just becomes a new normal.

 

So playing and eating, all in two weeks. Camille is on top form and all this new energy is allowing her to light up a room all over again. Even my London Marathon training is going OK, what is going on? www.justgiving.com/martinshave2012