The past week has had many ups and a few downs.
On Wednesday the three of us went to watch planes at the movies. Adelle was very excited especially with buying the pop corn and slushy. However she fell asleep about 20 minutes into the movie. At the end of the movie she was re-energized and wanted to play the video games in the cinema lounge which she enjoyed.
That night during bedtime story, she asked me to tell her a story about a little girl who had a tumor. she caught me by surprise, but i managed to tell her story but using a different name which she came up with. As I was telling the story she would help me with the story line. I was relieved to have Ben next to me at the time to help out and finish the story and she was quite satisfied.
On Thursday I phoned PMH in regards to getting a shower chair to help me with Adelle in the shower as being wobbly was getting very tricky as well as I was hurting my back with holding her and applying soap. we received a small shower and toilet chair later that day from silverchain while Ranita from PMH was organizing to courier a kids one to our house. I was so relieved that we got them very fast and Adelle is now enjoying doing her shower herself mostly and not have to be wobbly. Yesterday the courier arrived with the kids version.
On the weekend Shirley and her two daughters, Stephie and Sheera visited us from Moora and Jacqueline and Louis from bunbury joined us as well. Adelle got spoilt with presents and was happy to have company however she would resort to lying down after a few minutes play. Louis has brought her some movies that she's enjoying very much, especially Aladin which she's watched four times now. Daddy had promised in doing cupcake making so on friday afternoon everybody was decorating their cupcakes. Adelle mostly licked the icing off the spoon. Lol.
On saturday she was quite lethargic and stayed under the blanky most of the day. On sunday we all went to church. Ben had organised a mass for Adelle and I was glad we had friends with us for the mass. Adelle was more active compared to yesterday, so after church we went to Margaret River and visited the chocolate factory, Rose garden at voyager estate which she enjoyed smelling the roses and made a wish at the wishing fountain, then we were off to the beach. she loved playing in the sand with Sheera. Sheera has been amazingly careful with Adelle and made sure she's well taken care of. It was just a wonderful day.
Yesterday she slept most of the day. She woke up for about an hour in the morning then dozed off again. Then she woke up at 1 pm in time for her visitors , Clancy from her class, year 1G and his two little brothers. She made the effort to walk to the door (which is now very tricky) for her visitors . They had made some homemade juice for adelle and also brought some "Aussie Animal" cards which are very famous among kids. After a few minutes play in the play room, she resorted to watching kung fu panda on the couch with her friends. She fell asleep soon after clancy left until 7.30pm. She woke up wanting a bath, then had a light dinner and fell asleep again.
In general, we are managing the headaches with pain killers and they are set off when she does lots of movements. we are also managing the neausia with medication when required. She has not vomited since early last week. She's been sleeping the whole night for the past few days without waking up with a headache. The constipation is also being managed and I am sure she's comfy where this issue is concerned.
Thank you to everyone who has visited over the past few days. She has enjoyed the attention and would light up each time I tell her a visitor is coming.
09th October 2013
After the sleep in day on monday (which i was getting worried), Adelle was bright and bubble yesterday and today. yesterday she did not take any naps but resorted to watching movie on the couch. walking around is getting more tricky and as she is very determined she would sometimes crawl on four to get where she wants, mostly the pantry, LOL. otherwise i would carry her around the house and not that I am complaining but she is quite heavy.
Her apetite is ok, sometimes she would eat her dinner and sometimes not. Today she requested nuggets and ice cream at mckers for lunch which she enjoyed very much. We are also thickening her drinks as she tends to cough with normal fluid. Her drooling has increased and her right arm function is also decreasing. i only remember two weeks ago she was writing fairly well, but now she avoids writing all together.
This morning she went to Grace's house from her year 1 class for paper making. She had fun putting the pulp in the blender and later using the mesh to make the paper. She enjoyed picking up petals from the garden to add to the paper mix. She was also determine to walk around the garden by herself and play on the swing, bus rail and trampoline. with the latter she could not jump but laid flat on the trampoline while Grace and Chris jumped, what fun.
When we got home, I thought she would have ran out of energy but she surprised me with wanting to make a painting. so Ben set up the playroom for painting and they got busy (picture a bit blurry). Later this afternoon, we had a visit from father Nick, our parish priest and she fell asleep while we were chatting. I'm sure she is refueling up for another beautiful day tomorrow.
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