The past two weeks have gone amazingly fast.
Adelle is still doing amazingly well. The prayers being done by all of us, is in working well. She is still enjoying full time school, full of energy, bubbly, amazing appetite (including McDonalds chicken nugget and ice cream everyday after school) and cheeky at times. She still enjoys coming with me netball training afterschool on tuesdays as well as coaching the matches on saturdays. She is our teams little mascot and the girls just adores her. Two Saturdays ago, she got to take the player of the week trophy home as everyone played an excellent match.
Sometime during the past two weeks was my bday. As it was a week day we went for dinner at a local Chinese restaurant. Adelle got to choose her favourite Chinese food, noodles. The Saturday she had a birthday party after netball of one of her classmates. She had a wonderful time, and was the lucky winner for pass the parcel game. She collected a handful number of sweets from the piñata just for daddy when we got home. Later that day daddy surprised us with mummy’s belated birthday cake and more presents. (The best present was the book Mortal Instrument: City of bones, which now unfortunately I am hooked on, I finished it in a few days and now looking for the second book). Adelle took charge of laying out the table and birthday cake cutting routine. We all had a fun afternoon.
Last Thursday I was parent helper in her classroom and helped Ms Leyden, her teacher check and help the pupils with their work. It was amazing how well all the students were working. They had four tasks to complete and everybody was busy working at their own pace. Adelle was proud showing me her work and how well behaved she is.
Last weekend the three of us got to enjoy a weekend away voucher at the Regency holiday apartment in Dounsborough. We enjoyed some quiet time together, cuddling, colouring in, movies, playing hide and seek and best of all pillow fight. There was also a big spa that she enjoyed spending for about an hour with her dad. She was very proud to be able to complete a 100 piece puzzle with the minimum help from me. On Saturday afternoon she went to the beach with dad, but it was too cold to stay long. It was a shame Sunday came and we had to drive back home.
Tuesday she received a merit certificate in the school assembly for being a wonderful worker, and a friend to everyone, with clever ideas and producing wonderful work. She proudly jogged up the stage to get her certificate before standing in the line with all the other recipients. I was a proud mum video recording yippee. When she got into my office afterschool she proudly went around the room showing my colleagues her certificate.
Yesterday was very exciting day as she went to the “Room on the Broom” excursion in Bunbury with her class. She had a wonderful time and her wonderful teachers kept me posted hourly on how she was doing as i was quite on edge with her being far from both Ben and i. after school she had lots of stories to tell us about the show and how much fun she had at the park afterwards.
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| Happy Birthday Mummy |
27th August 2013
Another week gone already. If only i could slow down the time.
Adelle wonderfully bounced back after she caught the coup cough last Sunday. Like usual, after church she wanted to go shopping for a new dress as I had organised for us to go for a picinic in the park later that afternoon. However while she was trying on her skirt, she started to cough nonstop to the point of having difficulty breathing.
I phoned pmh who told me to get her to Busselton Hospital immediately. The poor thing was still coughing and would not stop.
We rushed her to emergency and very quickly a doctor looking at her. He informed us that the cough is the croup and an onset of asthma as well. We have not not had any issues with asthma since we were in Darwin last year and here it is again. So she was given some steroid for the cough and back on the ventolin. The steroid seemed to work immediately as the cough subsided quite quickly. We were told to keep her in bed for three days so our picnic plans went out of the window or at least I thought it did.
Once back at home she was feeling herself again and she decided to have the picnic mat in her room and had her picnic there with her teddies instead. too clever. Later on after lunch we snuggled the three of us with two movies. That morning had been a real scare.
Ben and I took turns in staying with her at home from Monday to Wednesday. by Wednesday she was just plain bored and was nagging me if she can go to school tommorrow. By then the cough had disappeared. so thursday and friday she went back to school. however it was at our own risk as although she was better, other kids in her class had other bugs as well. well it is the time of the year anyway where almost everybody have runny nose or something. But we cannot keep her cooped up in the house and prevent her from being a normal six year old either. these are very tough decisions.
on the weekend we went to mandurah for "aunty Georgette" 50th birthday. Ben had been suffering with the flue since Friday so he stayed home. After netball we went shopping for a present and card before the two of us drove up to Mandurah. she had a wonderful time and it was amazing how she had grown attached to Jimmy, Georgette's husband she was. Every now and then she would run and give him a hug. so cute. It was also good theraphy for me to meet with friends and talk and laugh especially on the morning after the party.
Later on Sunday we drove back home and on the way we went shopping for fruits and veggies at mandurah famous "spud shed". We bought lots of grapes which she enjoys and some other fruits which she chose all by herself. we got home at about 6pm and she was so excited to see her dad who was feeling much better. unfortunately i was starting to feel rotten and had to get some hay fever medicine from the pharmacy. as i said it is the time of the year for catching "bugs".
yesterday she was very excited to go to school. normally i keep her in my office until 8.30am and then she walks accross to her classroom where i can see and watch her from where my desk is, as she feels she is too big for mum to walk her to her class. however this morning she was too excited to go her class and kept nagging me, "mum is it time to go now' at least about ten times. Finally when I said ok, she was skipping out of the office with her backpack and almost forgot to give me my goodbye kiss. We had high school sports carnival on and at some point in the morning Ben came to me and said Adelle was upset and crying and he is taking her home. I was taken by surprise. I quickly checked my mobile, and I had a missed call from one of her teacher. there I was in the middle of recording an event and all sorts of things were going through my head. Anyway I manage to catch the two of them just as they were leaving and she had stop crying and was upset about something that happened in class. I was relieved that it did not look like anything health related.
Later Adelle and Ben came to pick me up at school and she was her normal self, happy and we went shopping at Coles. I told her that i needed four things and she made sure that i follow her to were the items were. she looked so cute doing that, "Mum follow me I tell you, I know where it is, hurry up Mum". that night she wanted to help me cook, so as soon as we got home she put on her Dora masterchef apron and we had a wonderful time in the kitchen just the two of us. She made the salad, and put the kebabs in the oven. she was so proud of herself and even had seconds.
More updates later
06th September 2013
Subject: Adelle's 28th update
After the croop cough episode in the previous update, the nasty cough came back last Thursday night. I took her to the Dr Lamb the following morning, our family doctor this time and he was happy to see her as the last time he saw adelle was just before we left for the holiday trip. Adelle had made him a colouring in "my little pony' picture that he keeps on his wall. He diagnosed the croop and issued prescription for steroids and added anti-biotic. So we had to have another four days in bed. Howeverm, on Saturday the cough got worse and worse. Honey and lemon did not do much help as it used to. Sunday there was slight improvement, but by Monday fortunately it was almost completely gone. Ben stayed home with her on Monday and when i got home from work she wanted to go to the park. Hannah the Teddy was sat nicely in the tricycle basket and off to the park we went. She rode alongside Ben while i took the opportunity to do some walking exercise.
Sunday, was father's day. On the morning she helped me make a special breakfast for her daddy and she gave Ben a torch which she had from the school's P&F stall and two cards all made and written by herself. In a section of one of the card, there was a question about how old is your dad. She wrote 59 years old. that was a tickler which i must remind you guys to make sure your kids know your age otherwise you are ancient. She also made another father's day card at sunday school during mass.
Last Tuesday, Ben and I had a meeting with Adelle's teacher Louise. She informed us that Adelle has been having difficulties with coping with the general work that she use to do with ease. This include following instructions systenatically of what to do, being in her own world (eg. talking out of context about Hannah the teddy), being incoherent in her descriptions of stories. She is also noise and emotionally sensitive. The latter, Ben and i had also noticed at home. She would be very short tempered with us. Her speech is getting harder to understand at times and she's getting very frustrated with us when it take us time to figure out what she means. As for the noise she does not ask us to turn up the volume in the car anymore for her to sing "try and try" at the top of her voice like she would normally do. Louise also informed us that it would be best to have an educational assistant (EA) just for Adelle during the day, to help out and make her day more wonderful. We were lucky to have a volunteer EA, Jannet, to come in on certain days to help out. Ben met with her after school during pick up and they had a chat.
This meeting led us to make arrangements with the school principal, Ted, for us to reduce the amount of hours that she spend at school. She is now on half days, tuesdays and thursdays until we need to reduce this further and then stop completely. She came with me to the meeting and waited for me quietly in the reception. After the meeting Ted gave her a minty, she was very happy that the principal has given her the minty that she ate it which she would normally hand to me. (she's not into mints or so i thought...). The next day at the video shop she got me to buy a packet of the same type of minty. (Girls!!).
On Tuesday morning (this week) she was not very happy when i told her i was going to pick her up at lunch time. She had tears and i had to bribe her with getting movies at the video shop. after lunch however when i walked into her classroom she was happy packing her school bag and ready to go. woohoo!!!! So off to the video shop we went and she got two movies for herself and convinced me to get another one for Hannah. (How can i refuse Hannah, LOL). We had a quiet afternoon watching Dora and the winks and at the same time we did some collage.
On Thursday she had a wonderful half day. She had made a solar system crown with Louise as a model to show to the class. Her classmates were very impressed and one of them called her the "queen of the solar system" (too cute). At recess she proudly wore her crown around the playground while she played chasey with her friends. Unfortunately i did not have my camera with me.
We hope that she continues to enjoy what she loves most, i.e school for as long as she can. Healthwise (relating to the tumor), in addition to what i mentioned above, she is doing ok. not great but ok. the slight dragging of her right leg is back. Her left eye would sometimes turn slightly inward. Her colouring in skills is slowly starting to go out of the window but her handwriting is still fairly good. these were some of the symptoms that got worse and eventually led to her diagnosis last year.
more updates soon, and i'll try to be more frequent (cross finger LOL)
09th September 2013
Friday was an exciting day at school. Adelle was reading her prayers in the early childhood chapel. I manage to get one of my colleague Phil to cover my class for 15 minutes so that I could attend her chapel. Her class had made prayers to give thanks and welcome spring. She read hers slowly and beautifully. She looked so cute and like usual I had to fight my tears off.
Saturday she agreed to go shopping for her friend Abbie, birthday present in Bunbury with Ben while I do the normal Saturday chores. She later came home excited to show me what she had bought. I suppose all of us female must admit what fun it is to shop with dad as we can twist them around our little fingers. So now the challenge was selecting what to wear for Abbie's birthday.
Sunday like usual she attended Sunday school during mass. Part of her attire was her solar system crown that she had made with Mrs Leyden earlier that week. She takes her queen of the solar system duty seriously. LOL. So during the presentation of her work in mass she was the only child with a crown, i wonder what the congregation was thinking about!!!! As soon as we got home from church she wanted to get going to Abbie's bday party but we had an hour to kill, so she sat down patiently watching garfield after telling me " mum you take for ever" over and over.
We made it to Abbie's house on time. Then off to Mcdonald for lunch and play, followed by singing happy bday and eating some beautiful home-made cupcakes. Then they went to Bunbury famous Taffy's lolly factory. She had fun watching the elder man working at the machine that wraps the sweets. He was very good with the kids and handed them freshly wrapped lolly . i was in heaven with all the chocolate around and smell of sweets in the air. i tried the chilli chocolate and OMG what a feeling!!!! The kids had some ice cream on the boardwalk and enjoyed watching the locals do crabbing. It was just a beautiful spring day to be outdoor.
Then off to the cinema to watch the classic wizard of oz in 3D. the kids took a row all for themselves while us parents sat the next row infront. I suppose Adelle felt good to be treated as grown ups. but 10 minutes through the movie, at the the wicked green witch scene, she got scared and moved on my lap and then enjoyed the rest of the movie.
We got home in good spirit but while i was getting dinner ready and chatting to mum on the phone, she started to cough again, non stop, so i gave her ventolin which helped. However later just before bedtime she complained of a headache. I gave her some paracetamol and that help. During the night just before midnight she started coughing again, i gave her another two puffs of ventolin and she went back to sleep. Her asthma seems to be on and off now.
16th September 2013
Subject: Adelle's 30th update
Lots of ups and down this past few days. lets start with the downs.
Adelle speed of detoriation is what seems to me to be increasing. two weeks ago i mentioned her colouring in skills was getting out of the window, this week the hand writing seems to start getting affected. She is extra sensitive towards the afternoon and on Friday i had to collect her early as she was not coping well in class. the headaches are constant and she complains about them once or twice a day, but the paracetamol is very effective and she will resume her normal self. Her speech is getting slurrer towards the end of the day and sometimes she gets frustrated when we cannot make out what she's trying to say. we are in the procedure of reducing her school hours to half-days everyday until the end of term (2 more weeks unless something else crops up).
the ups now. Yesterday was a beautiful spring day and after church, Adelle and I decided to go on a picnic that i have been promising her for a while, but the weather has been lousy. I gave her a choice to choose two friends to come with us and after a long reflection she chose Abbie (but lived to far), then taysha-Belle and Mikaela S. I gave their mums a call and they were excited for the day. After she helped me pack up the picnic basket and Hannah of course, we were off to pick up the two girls. we got some ice-cream at mckers to eat on drive to Yallingup Maze.
upon arrival the girls went on the bouncing castles while i set up our picnic bench. they then had a great time on the playground. We ordered some fish and chips for lunch and while waiting we went in the small "jungle" playground. I had to help Adelle with jumping from one log to the next and climbing the trees as she is now finding it tricky to get her balance. The girls found a caterpillar and spend some time patting and chatting to it.
We then had lunch followed by a trip to the maze. We took to easy task i.e finding tower 1 and 2. after a few dead ends and laughs and swapping of captains/leader we made it tower 2 first then tower 1. the most tricky part was finding our way out of the maze but we finally made it. the girls went to play on the many indoor puzzles that was set up inside the cafe. that allowed me to sit down and cool off. it's amazing how much energy kids have to burn. However soon after Adelle complained of having a headache. it was only 2 0'clock then and she did not want to end the fun but i had left her medicine at home. so to solve the problem and keep her happy we went back home for the medicine and then to the movies to watch the Smurf instead of driving back to the Maze.
the girls enjoyed popcorn and skittles while enjoying every moment of the movie. Adelle headache was gone and she was one of the loudest kids laughing. after the movie all three girls wanted to play on the video games in the cinema lounge. we enjoyed a few rounds before i drove them back home. By the time Adelle and I got home, we were both knackered but had one of the best mummy and daughter day....
19th September 2013
On Tuesday we had a chat with Ms Leyden, her teacher and later the principle with reducing the hours as she is losing her confidence, easily irritated. so we agreed that as of wednesday we will bring her in the mornings and pick her up at recess for the next couple of days till the end of term. At recess i collected her from her class and brought her to my class as i had invited the netball girls for a small end of season gathering and they were happy to see Adelle our little mascot. she absolutely enjoyed the little party and wanted seconds of the mud cake. After lunch i picked her up to go home and as we entered my office she complained of a headache. so I gave her some paracetamol that i keep in the office fridge for these occasions.
However yesterday was one of those days that i was dreading to happen. Adelle woke up at her usual time in the morning for school. it was going to be an exciting day as she was happy with spending two hours at school instead of more. She woke telling me that i have three eyes and two noses. As i was giving her her shower she told me she was dizzy and true enough she was swaying from side to side and i had to keep her steady. The headaches were back as well and they now more frequent.
Ben stayed with her and I drove off to work. as i was getting Ben's relief organised i met with Phil (relief cordinator) who told me to go back home. I was so relieved and broke down as this was a new phase that i had not sat down to put my head around it yet. No wonder they say this tumor DIPG is very agressive.
So back home i phoned PMH and spoke with Suzanne the oncology cordinating nurse. She was very helpful and told me that she'll contact silverchain and speak to Dr Phillips (adelle's oncologist) and get back to me. i hope that i'm getting these events in the right order but anyway Judy from Silverchain came to our house later that morning and we had a chat about how to keep Adelle comfortable. It's the first time we meet with her and we felt comfortable with her. Adelle will be wearing an eye patch from now on to help with the double vision. Dr Lamb (our local GP) also encouraged the paracetamol at regular intervals for the headaches instead of giving her when she have the headaches. as of the dizziness there's not much we can do as this is due to the building of pressure in the brain and both ben and i do not want to go down the steroid path. as we were talking to Judy she complained of another headache and i gave her some paracetamol and she then fell asleep.
When she woke up three hours later and told she's still seeing double, obviously the double vision was irritating her. So Ben and I introduce the eye patch in a fun manner and that when we buy the eye patch she can decorate it. She was not keen about looking like a pirate but was happy to decorate it herself. So i took off to the pharmacy. Unfortunately they had only black ones and not pink or white. i wasn't sure how she was going to react but she was happy with wearing it when i got home. She was in the middle of watching her movie and i think was relieved to be seeing one screen again. Louise her teacher will also be introducing the eye patch to the class so that Adelle do not feel overwhelmed with her classmate wondering why she's got it. She had already prepared the kids yesterday about Adelle not seeing well with one eye and being kids they tried to see how things looks like with one eye. so cute. Adelle is very lucky to have such wonderful and creative teachers.
23 September 2013
Lots of ups and downs this week. Lets start with the downs.
On Friday she told me that she is seeing four, another two eyes on her forehead. Now she refuses to tell me if she is seeing double, but you can see that she would close one eye when she's looking at something. She is not too kin with wearing the eye patches anymore. The drooling started recently and she has been complaining of belly ache but would not go for a poo. I phoned PMH yesterday and they advised me to give her Lactulose which helped but her belly still feels hard, hopefully she'll poo some more today. Her apettite is very good and enjoys her mckers and ice cream like usual.
Now the ups....
Ben and I are alternating half days at work now and that seems to be working. The school has been very supportive in the regard. On thursday afternoon Ben fulfilled her desire of going swimming at the local leisure centre and she had a wonderful time. We were are very fortunate to have very good friends here, Kate brought Anahera over this afternoon for a quick hello and brought some puppet making art kit and diary design kit to keep her busy. She started the puppet as soon as they left. She made mummy, daddy, Adelle and Hannah puppets.
On Friday she had a surprise play date with Mikala S, she was very happy to have a friend at her house and was running around the house while Ben and I spoke to the silverchain lady, Judy who came over for medication advice. PMH has been very quick with sending the medications that we may need in case of an emergency. In this regard i now have some peace of mind. later on she had a visit from Louise her teacher. Mikala had brought over two patches and stickers to decorate but they got busy with puting up a puppet show instead and they were hilarious. She had a teddy dressup, cuddles and story time with Louise. Later the kids enjoyed some fish and chips for dinner before Mikala S mum came over to pick her up.
On saturday she had another play date at Mckers with Anahera and Annie-Sue. They had a wonderful play but Adelle got tired pretty quickly but not tired enough to go dress shopping. I had brought her
On sunday we went church like usual and Adelle pulled Ben to the morning tea that was prepared by the parishioners after mass. She had quite an number of sausage and we had a chat with Judy and other friends from church. As we driving off in the car Adelle told us that she wanted to jump in a puddle and at the same time she was putting on her rain boots that she kept in the car. We drove around looking for a puddle that looked clean enough. She and Ben had a couple of jumps in the water. The weather was looking sort of good to be out of the house so we decided to later go play 10 pin bowling and watch a movie.
