Sunday evening again. Kate is sound asleep now so am in my room thinking about the great weekend we had. Mark should be arriving home with the boys around now. He will be carrying them up to bed and then he will be up til late unloading the car and getting everything ready for school tomorrow. It was fantastic to have Adam, Alex and Kate together for the weekend. On Saturday morning Mark came in to Kate to have some Daddy daughter time and do her bath, ties (dressings around her tracheostomy) and lots of hugs and kisses. I had fun with the boys watching cartoons. When Kate was having her nap Mark came to collect us and we all spent the afternoon playing on her mat on the floor of her room in TCU. Again Kate amazed us. She was off her ventilator for 45 minutes and she ate her first pieces if strawberry (half of one) and banana(1cm thick slice). The boys were eating them so obviously she wanted them too. I had them cut so thinly she did not need to do much chewing but she loved it. She especially loved being part of the gang. On Sunday the play therapist on the ward had arranged a treat for us. We were all to go to the Zoo to see Santa. I was really looking forward to it. We had not had Kate out of hospital for hours out since she arrived in September. I got her a new dress, hat, gloves and blanket for the occasion. On Friday afternoon I was told unfortunately Kates consultant would not sign her out so we could take her. I was very upset and cried for an hour when I heard. Of course I understood her safety was most important, but I really was looking forward to the three of them spending the day out together and creating the memory of a Santa visit as a family. Instead the wonderful care assistants and nurses on the ward looked after Kate this morning while we took the boys to the Zoo to see Santa. The boys really enjoyed themselves. They did not forget Kate when they were chatting to a kind Santa and a lovely pressie was sent back for her. Unfortunately, while we were away Kate had a desaturating episode when she got upset. She responded well to her resuscitation thankfully. Obviously hearing this when we got back made me feel very guilty for leaving. It was her first episode since last Monday. Kate did however come off her ventilator for 40 minutes this morning and a whole hour with us in the afternoon. She also ate another small piece of banana and a few chocolate buttons with the boys. We had a lovely afternoon again together. Kate absolutely loves when the boys are up. It is such a shame she cant be in hospital closer to home, but this is where the specialists are. Fingers crossed Kate will have a good week ahead. I will keep you posted. X
Posted on: Sun, 23 Nov 2014 21:12:18 +0000
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