Ruby’s rainbow | Community
Ruby’s rainbow
Phone: +61 420 308 262
Reviews
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25.01.2022 Ruby had such a great day today!! She worked so hard at her standing and hand opening working on her newly Botox muscles She loves her Triston Triston Hunter Step Ahead Physiotherapy and Corene so much xxx Thanks Aunty Joanne Hinch for coming up the drive and keeping my pregnant mummy company
24.01.2022 Think about this for a minute ... You might not think you have it so bad after all .... You want a drink so you lean over to the table pick up the glass and t...ake a sip, you have an itch so you scratch it, you want to talk so you open your mouth and speak, you want to stand so you do and stretch, you want to leave the room so you walk out the door, you want a big cuddle so you walk to your mom and put your arms around her ..... all these things are so easy and simple ...... now take a minute and imagine your body doesn’t work, you can’t move, you can’t speak, you can’t eat without help, you can’t scratch that itch, you depend on others for such simple things, you are trapped... Every minute of every day ... imagine ... my child is at war with her body every day ... my child is my hero ... my child is my life... if your special needs child is your hero copy and paste and open the eyes of the people around you xxxxx #cpawareness2020 #differentisbeautiful
24.01.2022 The proudest big sister you’ll ever see #sisterlove #disabledandhappy #somuchlove #happiestgirl
22.01.2022 Ruby tired wearing her glasses again we had an hour in them before she started to pull them
21.01.2022 Ruby finally got her new pram today yah to no more hyperextending at the pelvis she looks so comfortable in it already It made mummy want one for herself it’s like a giant cushion so much more supportive for our girl
20.01.2022 Ruby has been all out of sorts the past week so a bit of fun yoghurt painting today with mummy Her face says it all
18.01.2022 And so it all begins today!! Crazy sock week for our girl ruby!! My heart is always so full this week all the love from our amazing dance community from the whole of wa all for our girl ruby!!! And in this one week we forget the pain and struggles and horrible seizures she feels on a daily bases and just enjoy the love and cherish the memories we will have forever #crazysocks4ruby #coummunitylove
16.01.2022 More crazy sock madness on the final days @kerrys dance centre Acrodanz @dance it south west @top jazz ballet... @bianca panetta academy dance @powerhouse @dance Avenue Mandurah @connie Vidos school of dance See more
14.01.2022 Crazy sock week!! Please keep tagging us in your photos Loving these photos from Top Jazz Ballet Connie Vidos school of dance Kalamunda Performers... Acrodanz MSJ Productions Sorrento Stars Bianca Panetta Academy of Dance Thanks for the harsh tags and love
14.01.2022 What a big week we have had!! Ruby still continues to have multiple seizures so the plan moving forward is to completely and slowly wean her off one medication and increase the dosage of another, with this change ruby is being, monitored very very closely keeping track of all her seizures what they look like how long and to see how many as with weaning off a medication completely could mean a different type of seizure might show it’s ugly face!! Our neurologist has bought fo...rward rubys appointment to next Thursday to discuss our tracking for the week and if any changes... Ruby is definitely more sleepy with the increase of medication Yesterday saw ruby have a big day she had Botox injections in both thumbs and hamstrings and also was back at physio with her favourite Triston Hunter Step Ahead Physiotherapy it was a very big day for her and she still recovering, we left bunbury 7.30am Yesterday morning and returned home 7.45pm last night very tired little girl today we had!! But can’t wait to see what difference Botox in her legs will make
14.01.2022 I love my nanny and just want her better sitting next me and singing songs
14.01.2022 Big day for mumma ruby and Aunty joanne :) First stop this morning Perth children’s hospital to pick up rubys suction machine and for mum to have a quick run down and lesson on how to use it, as we all know ruby has had an increase in seizures lately that we can’t seem to control, our new medication plan that we started last month as not made any difference, so we are starting another plan and are now going to be trying another medication epilim (sodium valproate) but befo...re trying the new medication we have to wean off the others so another long process but with the uncontrolled seizures ruby has not been able to control her salvia and is coughing and choking sometimes so a suction machine to have at home in these cases has been needed..... Ruby than had an amazing physio session Triston Hunter Step Ahead Physiotherapy despite a seizure before and during the session, she than went to ot were she did some amazing playing and her thumbs are coming out nicely since Botox..., than off to get our afos checked which ruby has now outgrown so she will be in need of a new pair but for now they have been blasted out the best they can for her for the next few weeks, We than ventured home and got stuck in a major car accident so it was a very long 3 and half hour drive home!! But ruby handle the day like a champ :) unfortunately this will be rubys last trip to Perth on Thursday for her therapies as we will be taking a 9week break in preparation for the new arrival in two and a half weeks, So lots of home therapy programs need to be put in place to insure ruby does not loose her strength or get stiff over this time...... we once again thank our amazing therapist team for all they do and there support ruby will miss seeing you every week
13.01.2022 Ruby would like to welcome the arrival of her new baby sister Zara Maxine Hansen Born 22nd September by c section at 8.47am Birth weight: 2585g... Length: 49cm Head circumference 33cm A tinnie tiny little doll to play with We are all so happy and are enjoying being home and adapting to our new family life
12.01.2022 Zara was definitely keeping a close eye on ruby today in ot
10.01.2022 2 years of a lot of kms on the car and weekly Perth trips but we wouldn’t have it any other way!! 2 years ago ruby could not weight bare on her little chubby legs or could she lift her head.... she would scream the whole gym down now she laughs and talks to herself in the mirror her head and trunk control is getting super strong and she can sit unassisted for over a minute which we never ever thought was possible We owe this amazing women so much for what she has done for o...ur girl and where she has gotten her we are so so so forever grateful We love you with all our heart thank you for everything Triston Hunter Step Ahead Physiotherapy
10.01.2022 This is ruby most of the time at the moment :( and the seizures constantly making her exhausted and confused her poor little brain We are weaning medications so critical to keep watch on our girl at the moment!! And we will start a new medication in a few more weeks but We have to wait until we are completely off the other two as they did not mix well together, we also have a Telehealth appointment this week with the Pch dietician to discuss and explain the keto diet and how this could help with seizures aswell #seizuressuck
09.01.2022 More craziness #crazysocks4ruby Top Jazz Ballet @dance it Southwest Dance Avenue Connie Vidos school of dance... Bianca Panetta Academy of Dance See more
09.01.2022 Thanks so much to Eaton Tavern and all the staff and customers for filling another donation tin for ruby your generosity towards our girl is very much appreciated
08.01.2022 Just rubys normal morning anti epileptic medications!! Happy weekend everyone
03.01.2022 What a long long long day we had on Thursday Left bunbury at 7am for Perth and returned home at 7pm last night exhausted both of us where.... We started our morning with a team ruby meeting, which consisted of all our therapists so that was our bunbury and Perth physiotherapists, our bunbury and Perth occupational therapists, speech therapist, specialised feeding specialist, functional assessment and equipment occupational therapist, support coordinator and of course me mum...Continue reading
02.01.2022 Our beautiful smiley girl Not always smiles lately lots of tears and very sleepy and dopey, her seizures are definitely uncontrolled, and in her sleep they are just constant, her poor brain and little body must be so exhausted The new medication change we started two weeks ago is not working it has actually gotten worse to the pointe that they have pushed forward our hospital admission for the ketogenic diet in three weeks time fingers crossed there is a bed available on the admission day and we will still get to go on our first little family holiday down south that we have already booked, but her seizures need to be controlled so we had to take this date for our week admission We so hope the keto diet will work for her....... #betterseizurecontrol #seizuresuck #epilepsyawareness #epilepsywarrior
02.01.2022 Ruby loves coming to dancing
02.01.2022 Wow please watch!!! We would love for you to take the time out to watch this and understand our journey a bit more This is exactly our story down too a t but doctors did not recognise that ruby had west syndrome!! Unfortunately for ruby oral steroids did not work we had to go harsher and use injectable acth steroids And we weren’t so lucky ruby was the 80% that got permanent brain damage and nearly died in hospital but we are so lucky that she survived
02.01.2022 I love playing with my baby sister
02.01.2022 Ndis change of circumstances planning meeting ready for tomorrow, 3months of preparation of gathering therapy doctors reports quotes for equipment, impact statements and the list goes on, all to prove that what your child needs is nessesary Wish me luck!!
01.01.2022 Every time ruby comes To dancing she is overwhelmed with love laughter and peek a boo from all the kiddos She never stops smiling or telling them her only word she says more more more!!! It melts my heart seeing so much joy on her face, I don’t think these beautiful kiddos know how much she loves them and how much it means to me as her mumma to see her so happy and loved
