ADELLE'S UPDATE

Hello all

Not sure where to start really,

Lets talk about the ups. On Saturday we had a visit from Janet who has been babysitting for us when required for the past two weeks and Ms Leyden who read her a beautiful story. She absolutely enjoyed every minute with her teacher. then later she wanted  to feed the ducks with bread and then do some Halloween shopping. so we had a nice little picnic by the river and later enjoyed choosing witches costume. 

On Sunday she went to Sunday school like usual and was the first time we took her in her wheel chair and she enjoyed the activities and story. we also had father Francis bless a prayer quilt that the ladies of the rosary got for her. Thank you Maura for organising the quilt and we are very grateful to everyone who has made a little prayer for her. the beautiful quilt was hand made by a few ladies in the Dunsborough Anglican church. ln the afternoon we had a nap and then went to the beach.

On Monday she was very keen to go to school. Ben took her to school for about an hour. we also had a visit from her teacher Ms Leyden that afternoon and brought with her some work and painting book. She was also very keen to go to school on Tuesday and this time she spent over two hours. She got to cook green eggs and ham (from Dr Seuss book) with Mrs Peters and she actually enjoyed eating them. i went over to her class during fruit time and she was enjoying each minute. she wanted to do monkey bars which Mrs Green made sure she got to be a monkey. it was beautiful and heartbreaking at the same time to watch how determined she was.

 

On Wednesday she was just too tired and spent the whole day in bed. Today she woke just as  i was about to live for work and we had a chat which she was clear enough to understand. however later i rushed home later to find her not able to communicate, barely able to move or sit up, drooling and unable to swallow her saliva. Ben had phoned silver chained and they had already been before i got home. they had informed him that this was a the sign of the inevitable coming.

the sad thing is that today she so much wanted to go trick or treat. so we dressed her up in her witch costume and Ben hid the treats around the house. then we placed her in her wheelchair and went looking for the treats. we managed to get a few priceless smiles from her which meant a lot to us. after that she manage to chew on a marshmallow and then went to sleep wrapped in her prayer quilt.

 

Our silverchain nurse came around for the second time and i had a chance to talk with her. Truthfully speaking we do not have much time with my sweet sweet. It may be hours, days or a week or two. i am hoping she wakes up tomorrow as bubbly and determined as she was on Tuesday. Let's all pray.

ADELLE'S UPDATE

17th October 2013

Hello everyone

Just a quick update as it has been a quite busy few days a after starting work.

Adelle has been having a few not so good days where she would be lethargic and sleep or just watch movies and more of good days where she would be fairly active and wanting to walk around the house and keep busy in her play room. Ben and i have to walk behind her in case she false over as she is quite wobbly. sometimes if she figured, she is too wobbly she would walk on fours instead. She has not complained of headaches  recently as we are giving her pain killers on a regular basis. Her appetite is on and off and she's figured that the thickened fluid prevents her from coughing when drinking. So she's happy with us thickening all her fluids and she would even help me dissolve the thickener in the water jug.

Yesterday she wanted to ride her bike. She managed to cycle one lap around our block. I'm so proud of her determination.

On wednesday she wanted to put braids in her hair. after i platted her hair she showed new a personality. she asked me if she can sleep by herself in her room that night and wanted to speak to Anahera on the phone to tell her about the hair.  She took the phone away from me and walked around the house while chatting (which i tend to do). It's amazing how a new hairdo boost our confidence level.

On Friday Anahera kept her company for the day and they had a good quiet play and watched movies. We had more visitors from perth, our local parish and from our school on the weekend. Thank you Nikki, Maura and the Sopha family for coming and spoiling her. Hannah the teddy has now a new brother, Lucky.

Our local parish Rosary group organised for a special prayer quilt to be made just for her. Thank you Maura and all the rosary girls for the fantastic idea.  I will send pictures once i get the quilt blessed.

On tuesday she was excited for the first day back at school and woke up 6 in the morning and wanted to get ready. She had a wonderful morning at school. The school has now allocated a teacher assistant to her when she is at school which is just fantastic.

i am now back at work full time while Ben is doing full time carer. the past two days back at work has not been easy and i had to re-teach myself how to switch on "work mode" which i was managing very well last term. i am sure it will come back to me, maybe i am still in holiday mode.


Thank you to everybody who has been emailing, calling and messaging to check how she's doing. i really appreciate that you all care and wishing her well.

THE TIMELINE

8th October 2013

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.