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Elena’s Journey, Halifax, NS (2026)

03/23/2026

Elena has been having a great last few weeks!

We have been trying lots of new things together recently like skating at the oval, trampoline park, sledding and more!

She’s been perfectly healthy other than a little cold or two however shes handled them amazingly.

What I’m working on now with her is trying to get her to eat more orally instead of mostly through her g/J feeding tube. She will snack by mouth here and there throughout the day however she still isn’t back to eating little meals like she was before her first seizure last March.

She’s had and continues to have many checkups/tests done to ensure she’s still doing okay however she’s so far done great with all of them.

A few weeks ago she underwent two days of testing at the iwk and she was diagnosed with autism. Elena is delayed due to her long first year of life in the hospital with her countless procedures, so she is performing more at a 2-2.5 year old level rather than a 4year old level. Weather she is on the spectrum or just currently delayed with the potential to catch up to her peers one day, she is loved beyond measure and the sweetest girl I could have ever asked for.

Elena is currently able to walk, repeat most words, piece together a sentence at a time, count to 10 by herself, name almost every letter of the alphabet, knows her animals, and more. She has really taken off since starting preschool back in September.

I thank you all for your continued love, prayers and support for my little girl and I. Even though I’ve been offline for a while your kind messages don’t go unnoticed ❤️

02/23/2026

Hey everyone!

A lot of you have been reaching out wondering how little Elena is doing as I haven’t done a post here since early January.

Elena has been doing great, especially the last few weeks. Shes walking around so much, is eating more and talking (even singing) so much. After my last post on here, Elena did get another virus however she didn’t have to stay anymore overnights in the iwk and healed on her own at home with me. She definitely was sick but after two weeks she was back to her normal strong cheerful self!

This next part is a vulnerable post for me to write however I think its important to see that everyone needs a break to focus on yourself and how youre doing❤️

To be completely honest I (I’m Elena’s mom, Esther, for any of you who are new here) was completely burnt out after getting Elena back home with me from her long hospital stay. After the couple months of sleepless nights in the iwk, the emotional roller coaster from the last few years, new diagnosis the last year, health issues in both Elena and I, all of the specialist appointments, feeding pump issues (all of the time), all while being a full time single parent, everything caught up to me and I crashed. I realized I have just been moving on autopilot since 2021 and wasnt giving myself the grace and the rest I have so needed for years. After getting Elena home from the hospital the beginning of last month I realized that everything from the moment I found out about Elena’s CDH diagnosis at my 20 week ultrasound (in 2021) till now I hadnt stopped to process how this had effected me mentally, physically, emotionally. I needed to take a much needed break from social media to focus on Elena and I, she will always be my top priority. I will still be off of social media a lot moving forward but I’ll still give little updates on Elena through this page. I have found that staying off of social media, has had a lot of positive effects on my day to day life.

Let this post be a reminder to you to stop and to check in with yourself on how you are really doing. Do you need to give yourself grace? Do you need rest? Have you been putting things off that will be good for you in the long run? Do you have structures in place in your life that no longer benefit you? How can you put things in place for yourself to be recharged? Are you sitting at a table that no longer serves you?

We all go through highs and lows, we are all quick to talk about our highs but go quiet and shy away when it comes to the lows in life.

Being kind and supportive to yourself is the best thing you can do and how you feel will bleed into your kids, relationships, friendships.

I love and appreciate you all and always so thankful for you guys continuing to show up and support my amazing little girl ❤️

01/07/2026

I’m pleased to say that Elena was discharged from the iwk yesterday evening and she is home ❤️

She’s full of energy and almost fully back to her old energetic sweet self!

She is going back to the hospital soon to get imaging of her abdomen where the new shunt is draining into as this morning I noticed that side was sticking out more, looking as if fluid was building up in that area. I talked to neurology and they are booking her in for an appointment soon but in the meantime said to keep monitoring her and if she starts to decline again then to bring her to emergency.

Please continue to keep her in your thoughts and prayers. Hoping that this fluid in her abdomen goes down in its own and she can start to heal❤️‍🩹

01/04/2026

Elena has been getting better and better everyday since her surgery early Friday morning!

We go on many many walks daily around the hospital and I’m hoping we will go to go home soon.

Doctors are just waiting for brain fluid tests to come back from the lab to make sure there’s no infection growing in her new shunt.
As long as that test comes back negative in the next few days then she will be sent home soon after ❤️

We are tired but so looking forward to elena continuing to heal, to get back on a schedule at home and hopefully for Elena to go back to school in January. Elena loves school and has been missing it very much!

Please continue to keep Elena in your thoughts and prayers and that the tests all come back negative for infection ❤️‍🩹

01/02/2026

Emergency Surgery Update:

Elena went into surgery around 2am and was done around 5am. Everything went well during surgery.

There was a LOT of brain fluid built up in her head, neck and left side of her chest where the last shunt tubbing was draining into. Unfortunately her body was producing more brain fluid than then the tissues in her chest could reabsorb which caused all of the buildup of fluid, making her very uncomfortable/unable to stay alert and awake for long.

Surgery went well, a lot of fluid came out, they took the old shunt tube out and put in a new one that now goes down to the abdomen internally to drain in her tissues there.

When she went down to surgery elena was very groggy, uncomfortable and unable to stay awake for long. When she woke up from surgery she was more back to herself and has been feeling much better this morning. She still has a long way to go with recovery but it’s amazing to see little bits of her personality come back.

We are hopeful that this will be successful and she won’t need any further medical interventions.

Her and I are in the iwk and will be here until her medical team gives her the go ahead to recover more at home.

Thank you all for your continued prayers and positive thoughts ❤️‍🩹 it’s been a long long long last few months but hoping this is the start of a new healing journey for Elena.

01/02/2026

Update:

❗️❗️Elena has been admitted into the iwk again and will be receiving emergency surgery in about an hour. ❗️❗️

Doctors found that Elena’s body is producing more brain fluid than her chest is able to drain (the new shunt draining tube was put down into the left side of her chest where her tissues there were supposed to reabsorb the fluid) and unfortunately now her body isn’t able to absorb all of the fluid in that area. After doing some tests and weighing out all of the options, Elena’s medical team decided they needed to do a revision of her last shunt surgery to take out the current tubing that’s draining down in her chest and put a new tube in that will drain down into her abdomen (like the last shunt she had that was on the opposite side).

Elena is currently feeling the side effects of the buildup of fluid in her head which are major sensitivities to light, headaches, throwing up, grogginess, unable to stay awake for long periods of time, eyes darting back and forth from the pressure she’s feeling in her head and restlessness when awake. She thankfully is still interactive, is able to communicate that she’s not feeling good and will ask to be moved into a new position while shes awake.

Although it’s scary having her go under anesthesia so many times in her life, I think the best thing for her is you get this surgery tonight and get the pressure off of her brain.

Please keep her in your prayers tonight for her surgery and moving forward in her recovery ❤️‍🩹

Praying for healing and more normalcy for Elena in 2026

01/01/2026

❗️Urgent prayer request for Elena❗️

Please keep elena in your prayers and pray for healing.

Elena took a turn last night and has been very unwell. She’s throwing up constantly, unable to stay awake for long, can only be laying down due to zero energy. There is a huge lump of what looks like built up fluid on her head where her new shunt is and the tubing that goes internally down her neck seems to be blocked up with brain fluid and is also causing massive swelling.

All of her symptoms align with the new shunt malfunctioning.

Elena just had scans done and she’s top priority right now at the iwk to find out what’s going on.

Please pray for healing. It’s been so hard to see her so sick the last couple months. I want nothing more than for her to be happy and healthy again ❤️‍🩹

I’ll update once I know more. I’m assuming she will need surgery.

12/28/2025

Hope everyone had a great Christmas 🎄

Coming on here to give an update as a few of you have messaged wondering how Elena is doing.
I’m happy to say she has stayed out of the hopistal and has been stable at home. She definitely is not back to her normal self. She’s not sleeping most nights, throws up a couple times a day, isn’t eating much orally, being fed through her J tube and is unable to take G tube feeds (formula straight into her stomach) as it makes her throw up. Even with all of this she’s been able to enjoy her Christmas.

Please continue to pray for Elena and for her to be back to her energetic self soon ❤️‍🩹

12/20/2025

Guess who got let out of the IWK on a “pass”??!

Elena hasn’t had any episodes of her O2 dropping in 48hours and last night her medical team decided to send Elena home on a pass which means she’s still considered a patient at the iwk however they are letting me take her home to see how she does while I continue to monitor her. Doctors call me asking for updates on how Elena is doing.

They did find fluid around her left lung where the new shunt fluid is draining. At this time due to her not having O2 drops in the last two days her medical team decided it was safe to let her trial going home. If anything starts seeming off i can take her back into the iwk to be seen by her team.
She still has her PICC line in for the time being and if she continues to do well the next couple of days then we will go in for a few scans and get her PICC line removed next week.
Elena is incredibly happy to be home. Her first night back in her crib was amazing and she slept so soundly.

There’s still a 50/50 chance she could need a surgery to fix the fluid problem around her lung if it gets worse. However her medical team and I find it encouraging that her oxygen levels haven’t been dropping the last two days showing that things arent getting worse and hoping it will resolve on its own.

Please continue to keep Elena in your prayers❤️‍🩹

12/18/2025

Today we were supposed to go home however we aren’t anymore due to news from an xray.

On the weekend Elena had an xray and it showed fluid around her lung where the new shunt is draining into. The shunt drains into the tissues around her lung and then they are supposed to absorb the fluid. However she had another xray today and it showed that there still is fluid that isnt going away. Right now it seems to be the same amount of fluid there as there was in the weekends xray. It could get more complex if it continues to grow though. That is most likely what’s causing her O2 drops. It’s the fluid from the shunt not absorbing into her tissues. (The last two days shes been great other than a few times her oxygen levels go down drastically and she goes super still and blank. This lasts a minute or two and then she’s back to her normal self. This happened todau, last night and 2 times yesterday.)

After this finding we will no longer be going home today. If it gets worse then they will have to either drain it with a tube, or move her shunt line to her abdomen again via surgery, put a scope down the top of her head and cauterize the part of her brain that creates the fluid to make it make less.

Please keep her in your thoughts and prayers. Not sure what next steps are at this point but I’ll update her page when I know. ❤️‍🩹🎄

12/17/2025

Elena is doing pretty good all things considered! She had a very eventful day yesterday in the iwk play room and walking the halls. She had a decent sleep last night and then she was out and about early afternoon today as well.

This morning she had her very last dose of antibiotics which is great! She’s completely stopped throwing up the past couple days also which is new and an amazing sign that everything is healing well since her big surgery on Saturday.

She did have an odd spell today where she was very groggy and absent, oxygen levels dipping. It was making us all concerned although after a few hours it passed and she’s been back to her recent normal. Hoping that doesn’t happen again and that nothing else is going on internally.

Her medical team is going to keep an eye on her tonight and tomorrow they will meet to see what the plan is moving forward. Hoping she is well enough to go home soon and heal more in our own space.

Please continue to keep her in your thoughts and prayers ❤️‍🩹 she’s slowly getting better

12/15/2025

Elena’s been having lots of rest time since her surgery. Today was the first day since surgery on Saturday that I got her out of bed and went for a wagon ride around the iwk. She absolutely loved it and smiled/laughed/yelled beep beep the entire time.

Started physio today to hopefully get her moving around more on her own again. Before this last month of sickness, she was for the most part walking on her own, climbing onto things, able to do things more independently. Hoping to get her somewhat back to her baseline soon as she heals❤️‍🩹

Elena had some X-rays today too for doctors to look at how everything is going internally with her new brain shunt. Haven’t heard anything back yet which is usually a good sign that everything looks great.

She is still getting antibiotics to make sure the old infection is gone from her body and to try to prevent any new viruses to show up after her surgery.

As you can see in the wagon picture, Elena has a new haircut. It’s shaved like that on both sides of her head as they had to take the old shunt out on one side and put a new one in the other side.
Breaks my heart to see her have all of these surgeries but so grateful to start this new healing journey with her.

Please keep her in your thoughts and prayers. May no other medical complications happen and may she be able to heal and get back to being a little active girl again❤️‍🩹

Elena’s Journey

03/23/2026

02/23/2026

01/07/2026

01/04/2026

01/02/2026

01/02/2026

01/01/2026

12/28/2025

12/20/2025

12/18/2025

12/17/2025

12/15/2025

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