Elliana's journey

02/12/2023

Please go vote

Who will become Inked Magazine's Cover Girl?

02/07/2022

Elliana's Boujee Bowtique

11/19/2021

5:27 am my precious baby passed away

11/10/2021

11/10/2021

Ellianas bucket list! She will be riding pony tomorrow 😍😍.

11/10/2021

Elliana's first hair cut by her glam ma!!

11/05/2021

❤💜🎄🧑‍🎄🤶🎅😭☃️I know this is Elliana's page but in order for me to continue to stay home with her and spend quality time with her I do things like this. Thank you all! ❤💜🎄🧑‍🎄🤶🎅❄☃️

https://www.facebook.com/Crafty-with-christine-100156098079042/

personalized items hand made with love

11/03/2021

With me staying home with elliana I try to keep hustlin to make money. Check out my page! https://www.facebook.com/Crafty-with-christine-100156098079042/

personalized items hand made with love

10/16/2021

10/11/2021

Tomorrow me and Austin are meeting with palative care for elliana I'm so sad but know they will definitely make sure she is comfortable.

09/24/2021

I have left over team elliana shirts if anyone is interested or I can also start a new order if I don't have your size.

09/23/2021

Seen the pulminologist yesterday she is now on 1 liter of oxygen 24/7 he also requested another sleep study and thinks she will need a c pap machine. He also ordered a cough assistant to help her with that. Her lungs are swollen and full witch is slowing her oxygen down I believe.

09/10/2021

I have had a few ppl asked me about this.

http://spot.fund/cbB1rI

I have had several people ask me if I had one of these so I made one. I attached her page so you all can go follow her page. Elliana is...

09/08/2021

http://spot.fund/cbB1rI

I have had several people ask me if I had one of these so I made one. I attached her page so you all can go follow her page. Elliana is...

09/04/2021

LONG POST. MY GRAMMAR AND PUNCTUATION SUCK HAHA. BUT WRITING THIS THE BEST I CAN.

So after 2 months I finally got to talk to elliana's doctor and go over her MRI results. Elliana's seizures have been getting bigger and lasting longer. So I had so many questions and wanted them answered and told them I'm not waiting til her November appointment to figure this all out. At this point the doctor said we can try anything for her at this point to try to maximize her quality of life. We are winging her off one of her medications and upping her other medications to try and help with her seizures. I want to try the CBD but I don't want to try it at the same time of us decreasing some and increasing because how would we know what's working? She is trying to get her more alert she said to give her a better quality of life. She said her brain is shrinking everywhere throughout her head. I just finally started working a month ago I feel I need to quit again and spend as much time as possible with Elliana. Elliana's nurse then asked me the hardest question I never thought I would have to answer is she a DNR? When I first started a home nurse I said yes but after finding out how serious she is I have decided she is probably going through enough now I don't want to put her through that. Here is what the doctor write in her after report notes
Reviewed head MRI report which showed progressive advanced atrophy. Progressive atrophy can be seen in SPTAN1 mutations. Patients with severe neurodevelopmental outcomes and progressive atrophy associated with SPTAN1 can heave early mortality including SUDEP (Sudden Unexpected Death in Epilepsy). I'm a hot mess right now I don't know why this had to happen to us. I'm not over my brother yet at all. It has been bothering me bad this last month. I'm hurt, sad, confused I don't know how anyone can prepare for this or what to do. If anyone has any suggestions on how to handle this please let me know. Everyone know my anxiety is all ready threw the roof and I already have a fear of dying and thinking about it so I have so much going on in my little brain. Lbs.

08/25/2021

go.tinysuperheroes.com/5h0y

08/23/2021

Really need more donations for the benefit. Also trying to do a poker run if anyone can help point us in the right direction

08/06/2021

Elliana loves her new pajamas she got for her birthday 😍

07/27/2021

We're working on the benefit to get it back up and started thinking in October sometime if anyone has any items to donate please let me know. A few people has also asked me about donating money she has a bank account at busey under ellianas benefit. All money goes to help with gas food and stays for out of town trips. Thank you all.

07/27/2021

Thank you everyone for the love and support keep sharing.

07/27/2021

Im trying really hard to reach the stars there is a lot of hoops to jump threw please share the page comment and like the post also interact while im live. thank you all

07/27/2021

https://www.amazon.com/hz/wishlist/ls/CQ2S0LI1C8YA?ref_=wl_share

07/27/2021

She's awake for once

07/23/2021

Here is an update on what elliana's eye doctor said
He said that her eyes work its her brain that is causing her not to see. Basically her brain is Deteriorating. There is some good cells in there that one day she may be able to see but he will see her again in 6 months. He couldn't answer any of my questions I asked about still recieving therapy or life expectancy of anything like that. So I reached out to her doctor at luries and they will be reading it and going over further more info with me.

07/21/2021

I forgot to post I had a mri Monday to see y I'm blind waiting on results.