The bubble is shattered! Mummy and daddy held out such high hopes for the feeding clinic but really it was all in vain. It all started out really badly. I was tired and in a bad mood when we got there and all I wanted to do was sleep. We sat in this really hot room with the sun pelting down on me and I was decidedly uncomfortable and hot. Mummy tried to tell them to teach me to take a bottle but they became obsessed with my lactose problem and refused to focus on anything else. Their best suggestion in terms of a bottle was to get me so starving that I would take it even if this involved 24 hours of starvation and crying. I shudder as I write this and I can feel mummy’s tears welling up in her eyes at the thought. They also made mummy worry about my length and they said that my growth was being retarded because I was not getting enough nutrition. They also weighed me and according to their scale I had not put on all the weight I thought I had.
Kylie, the dietician suggested that I go onto this medication called Lact-ease which would digest the lactose for me. Mummy said that she would get it but when she got home daddy said that we have to check with the doctor first.
Mummy was furious after the appointment as she felt as though we had achieved nothing and she took me barging straight into Dr C’s rooms but he was not there so we left a note for him to phone us urgently.
Thursday 16 August 2001
Oh my mum is a hysterical person. This morning mummy spoke to Dr C and became hysterical. She said that he agreed that I have to take a bottle or else I might start to suffer from the lack of nutrition. He started to suggest horrible things like a small bowel biopsy and mummy became quite hysterical and inconsolable. She decided that I had to take the lactose drops that Kylie had mentioned and show Dr C that we did not need any biopsy. She was very emotional though and I am extremely grateful that we had my sister and nephew to provide some sanity and support because the morning only got worse.
After mummy had spoken to Dr C and made an appointment for later today we went to the chemist to buy the drops. The first chemist did not have them – not a problem, the second chemist told us they would only be available in December – a problem. Mummy cried from chemist to chemist, she phoned the manufacturers, she sobbed and pleaded but we could not find any of this medicine in Sydney. Mummy spoke to Kylie and she did not know where we could get it. Finally mummy found some at the hospital pharmacy and we have procured it and started to take it with each feed – but more about that later.
At the one very helpful chemist the pharmacist suggested that mummy try eliminate all dairy from her diet and see if that would have any effect on me. She even discussed this on the phone with Kylie and so mum is going to do that for me – I know it will be very hard on her because she does ever so love her chocolate.
Eventually we went to see Dr C and as always he was very calming and reassuring. He did say that it was becoming urgent that I put on weight and he explained that I probably had no lining on my small bowel because of all the lactose. He does not believe that the lactose drops will work but is prepared to give them a try. We now have a definite plan of action
1. I am going to take lact-ease before each feed
2. I am going to try very hard to take soy formula in a bottle
3. I am going to continue to take polyjoule
4. I am going to eat solids once a day
5. In 4 weeks time I am going to the gastroenterologist
6. Mummy is going to have no dairy in her diet