A forced reality check has left me feeling a little bit down in the dumps. We went to the country Lion Park at the weekend and it was wonderful, especially the feeding of the Giraffe. He was very gentle and had a very long blue tongue. Then it hit home, Ava, although she can sit for a few seconds when positioned correctly, still has no inclination to hold herself or move into any particular positions. I tried to get a photo with Ava, the giraffe and feeding it but because of what I just said it was very difficult to achieve this. Ava has done so well in therapy, she works hard but she has such a long way to go. Yes I know we need to take it one step at a time and these last few weeks have brought her on a lot but the distance left to cover is massive still.
I hear encouraging stories all the time about children with neurological conditions and how they have made great progress. A young man we know attends Houghall College and walked at age 6. A young girl who attends Therapies4Kids and has done since she was 2 started to walk at 5. One of my ex pupils with cerebral palsy just graduated in journalism. These stories always give me encouragement, so why does my heart feel so heavy these last few days? I look at my daughter and am so proud of her, she is amazing and we love her so much. I also look at her and feel hurt that she had this dreadful thing happen to her and I couldn't protect her from it happening. She is 3 in 3 months time, she should be saying her first sentences, playing with her sister and running me ragged. It makes me so very sad and its times like this that I feel so helpless. I try my best but feel its not enough.
Our days go by quickly. Get up and give Ava her meds and her first milk feed which takes an hour. Get everyone ready have breakfast. Molly and daddy off into the pool, Ava has her nap then her water, I tidy up get Ava's things ready for therapy, give her next feed before therapy and off we go to therapy for 4 hours. We come home and Ava gets her milk feed straight away, she gets her oral feed at therapy to keep her energy up. Then we have tea, get everything sorted for bed. Ava gets her meds and final milk feed - all of which take an hour each time. Her milk feeds need making for the next day, kettle gets boiled, left for half hour, powders weighed out while waiting and split between four sterile litre bottles once mixed with the water then stored in the fridge for the next day. By this time its 9pm and time for bed ready for the next day. Food shopping, cooking Ava's ketogenic diet food, washing, ironing and cleaning all get slotted in at some point in the week. It's little wonder time has gone so fast. Won't be long till we are saying goodbye to the amazing therapy staff here. We get a care plan to go home with which will help us progress Ava some more. Here is to more progress in the 8 days of therapy we have left.
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