Nova’s Journey GFPD warrior

05/24/2023

Missing you so much Nova love 💜💜

01/09/2023

💜💜💜

View Nova Socobasin's obituary, send flowers and find service dates or sign the guestbook.

01/08/2023

Our Nova love became our forever angel on 1/6/23. Our girl was exhausted and just couldn’t continue fighting anymore. Her love and strength shined through during her whole last hospital stay.
We miss our littlest love so much already but we know she is no longer in pain and suffering.
Our girl was always trapped in a body that just didn’t work for her.
We know she is now walking and running circles around everyone, talking all their ears off and eating all her favorite foods that she’s missed so much.
We haven’t never met a stronger little girl in our life. She was truly a warrior and now my inspiration.
💜💜

12/25/2022

Merry Christmas! Love you all 💜💜

12/17/2022

This! I feel this!
From the day we sat and received the news of Nova’s diagnosis in 2020, to every regression of hers, in and out of the hospital literally this whole year. The first biggest regression happening in January 2022.
The regression hit so hard and so fast, literally smacking us in the face and shattering our hearts. That was just the beginning. Through this year we’ve literally watched our girl just fade to a little girl she is not!
Where is our little girl that laughed at everything, scooted around under everyone’s feet to the point of almost tripping over her, in your face all the time knowing no personal space, throwing every single thing out of cupboards, the loudest one in every room and DROOL…drool everywhere and LOVE, she absolutely loved with her all!
WIth the sadness of her regression we also got to enjoy every milestone she succeeded. Hand eye coordination, fine motor skills, pulling herself out of her walker (I’ve never seen a child do that), eating with a spoon, being able to see wearing glasses, hearing our voices with her hearing aides, climbing up and down onto the couch, pulling herself up to stand, and strong…her strength was incredible and also speaking some words. Mama, dada, bubba, aba and rara…all the words that meant the most to her!
Every hospital stay Nova shows more regression, there’s always more heartbreaking news, and ends up with a new baseline for her. Each and every time she needs to go to the hospital it just rips all of us apart knowing she’ll be coming home with a new plan, new struggles and possibly new equipment.
We got to have the best of Nova, the best she could be and we cherish her very single second!
With all that being said, I’ve got to say that we’ve had the best team of drs, nurses and support system. From the day we received her diagnosis all the way until each and every time she’s hospitalized. We seriously have the best! We never feel alone, unheard, disrespected or unsupported.
We are a very lucky family and an even more luckiest precious little girl!

12/15/2022

Tonight!!!! 💜💜

12/10/2022

Update on our Nova love….

Tube is out! Dr is keeping a close eye on her cause he said it could go either way, keep the tube out or possibly back in but she’s doing ok right now. His concern is her weak muscles for her airway. Her lungs are great, it’s just the airway part. She’s on oxygen and has a nasal catheter in for suctioning so they’re not going down her throat as frequent. A respiratory therapist is close and will be with her all day.

Neurologically our brain tells our body everything it needs to do. Unfortunately Nova’s brain doesn’t have the capacity to do that for her little body, which makes things a little more complicated. Along with weak muscle tone as she’s losing that all over as well. Her disorder attacks neurologically which is causing the deterioration of her brain, as we seen more of in her MRI results yesterday. So right now her airway doesn’t open all the way like it normally should so it’s a struggle for her. We are hoping that changes but we will be patient and see. She has just had the most traumatic 3 days ever so hopefully she will settle down and fight to get as better as she can be.
Everyone please keep praying for our littlest love! 💜💜

12/06/2022

Look at miss nova go!!! Lots of movement and making noises. Best sight and sound ever!! She does so amazing in her chair 💜💜

11/29/2022

This giving Tuesday we ask that you donate $23 for a successful 2023! Funds donated through our Give for OUR Families fundraiser will go toward building better family programs, research, advocacy efforts, and more for our and their families. We appreciate your generosity and support of our GFPD Community!
https://www.facebook.com/donate/424737669859332/

   

11/27/2022

💜💜💜

11/21/2022

We got the good news that Nova is finally able to go home tomorrow! It’s been a long 14 day stay in the hospital with lots of ups and downs but our love is finally in the mend.
The only hold up with her not being discharged today is that home health isn’t able to be at our home until tomorrow. We need them there so her pump can be reprogrammed to continuous feeds for now. We will be slowly working her way up to regular feeds at home in time.
But first let’s get our girl home and continue being comfortable! 💜💜
She’s definitely been a trooper and fighter through this long stay!

11/19/2022

Miss Nova update….
She has started full feeds continuously through her pump. She had some struggles yesterday evening and lastnite but seems comfortable today. They’ve started a new medicine that helps relax her stomach so right now they’re seeing how that’s going to work.
Her respiratory is much better. Still needs suctioning here and there but much better on that issue.
Dr is hoping for a goal of Nova going home on Monday. Let’s hope this all works for our love!
💜💜💜

11/17/2022

Nova is much better today. She’s slowly starting to get back to herself with some big smiles. We know when Nova isn’t well when she isn’t her big smiling self.
Today they’re slowly working on upping her feeds. So far she’s only been getting pedialite through her pump at small volumes. Once she’s up to the amount they would like to see they’re going to add her formula, half pedialite and half formula. So far she’s been tolerating the pedialite very well. Let’s hope she does the same when they start adding her formula. If she’s able to tolerate it all we will be heading home soon.
Today has been a good day!

11/14/2022

Nova update…
We are still here at the hospital. The past few days they’ve been trying to figure out her pain, trying to control it and also figure out exactly where it’s coming from. It seems to come and go a lot, when it comes it comes on strong and she cannot get comfortable and when it goes she’s relaxed and tries getting rest. They have done a ton of tests and still trying to figure it all out. Her UTI has been treated, her pooping issue has treated but she’s still in pain. They’ve stopped her feeds because we are all thinking it’s definitely something with her stomach. It’s seeming like she can’t handle regular amounts in her stomach like she usually does. So for now she’s getting a continue small amount of pedialite through her pump to her Gtube.
On a good not her respiratory has gotten better. She hasn’t had to rely on oxygen much at all if any. Sometimes at night while she sleeps she needs a little extra but not much. She had lots of junk in her lungs that they’ve continuously been getting out of her.
They’ve seemed to figure out some pain management for her which is good but she still struggles at times.
Everyone pray they can find some answers and our Nova love can be on the mend and have a good plan moving forward for home.
Our girl is definitely a fighter and is staying strong through all this. She’s taking every single test like a champ. She truly is a warrior!
💜💜

11/10/2022

Update on Nova love
Her breathing and oxygen has gotten better by the day. She’s had her ups and downs but getting better. She’s had lots of chest PT and breathing treatments but hasn’t had to depend on oxygen much at all.
Sadly her pain and being uncomfortable had gotten worse throughout the day yesterday. They are thinking she may have a UTI but we still don’t know for sure. They did start IV antibiotics and another pain med. The dr has started focusing more on figuring out where her pain is coming from now that her respiratory is improving. They are doing everything they can to help her be comfortable and pain free. It’s been a rough few days for our girl and she is completely exhausted. She did sleep a little better lastnite but was still up a lot crying and whining.
The dr will be in again today hopefully with a start of a good plan.
Our girl hasn’t been her happy self for days now, let’s hope she’s able to get some relief very soon.
Nova love is one strong little girl and has been fighting through it all. She is beyond amazing!!!

11/09/2022

Sadly Miss Nova love has yet again earned herself a stay at EMMC because of her respiratory struggles. Her oxygen was pretty low and she was working harder than normal with her breathing.
All negative for Covid, flu and RSV. It’s all due to her respiratory weakening and not being as strong as it should be.
She’s on oxygen, inhaler treatments every 2 hours and some IV fluids.
She’ll be here for atleast a few days for her to be monitored and see if any of her treatments need to be changed up some.
Everyone keep praying for our little warrior!
💜💜