What a day, it has been full of intense emotions that have been feelings so desperate for this program to work to such joy and elation I just wanted to yell my relief to the surrounding world. I have pleaded with God and prayed and prayed and he has and is answering. Faith is now asleep in bed and for the first time we have stopped and thought what do I do now? Clean up? No can't be bothered I will sit down and write so I don't forget this day.
Faith slept through the night and woke hungry and we gave her her medications, water and electrolytes. She was still refusing any oral food or water. The speech pathologist arrived and we took Faith into the bathroom to show her her face with the NG tube and then I pulled it out and we waved bye bye tube and threw it in the bin. Wow! It is done!
Faith was overwhelmed and tired and from what I have read this seemed to be a normal response. With pulling the NG tube out a very different start to the day and we had a little food play session and she was ready for a sleep so we put her to bed and jointly decided to let her sleep for an hour and half and then wake her and start some of her planned outings. We woke her and she was upset and sleepy but recovered shortly after. We headed to the park and Faith was sleepy and not really into playing. We got out our pureed food, thanks to the wonderful Vitamix Blender, pureed grape and pretended to put lip gloss on and Faith tasted it and wasn't unhappy about it. Hubby and I played ball to distract Faith and the speechy used a special peach colored spoon and Faith took the food, we kept the distraction and it seemed to help and she was eating, she was very sleepy but taking the food. I think her body was telling her she needed to eat and drink and this is what she slowly started to do. She ate custard and by the end of the session was drinking some water (a combination of watermelon puree, water and electrolyte). The day before we had gone through lots of different type of cups we could use for Faith and Faith picked one but in the end it wasn't the one and she moved to another cup. After a good half an hour feeding with no NG tube we headed back to the apartment for a short rest for Faith and then have another feeding time.
Faith had a quick nap and we she took another small amount of food but required distraction but was doing ok. We thought it might help to go for a walk to Southbank and of course a quick stop for some delicious waffles at Max Brenner, our favorite cafe, Faith kept drinking which is wonderful since over the last week she hasn't drunk hardly any water. We headed to the pool play area and let Faith watch the other kids and she ate heaps more, her mouth actually OPENED wide for the food. She ate heaps and even tasted sweet potato. She has picked up after her eating sessions and we have had two more since we came back to the apartment and she did really well even when we hid her medications in some of the food. She is completely exhausted and after her bath is fast asleep in her bed. So that is our day, we have reviewed what worked and didn't and we have all planned what we are going to try tomorrow, our little girl Faith is doing so amazingly and I am so proud of our little girl. We have all worked together as a team and we are getting there. Praise God!!!
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