Aspen's Journey

Aspen is our 4 month old daughter who was admitted into University of Michigan hospital on 12/5/2020 for being non responsive after suffering a seizure while home with her dad/my husband Ryan. 

Dr's came in to examine her. She was lethargic for awhile. 
One dr came in & took a look at her port wine stain birth mark, the Dr then proceeded to tell us that he is almost positive it is a Sturg Weber marking. & because of SWS it can cause seizures as well as many other neurological, vision, behavioral & other complications. 

For anyone that has met her in this short 4 months, knows she has a defect in her left hand, so we brought that to the dr's attention & thankfully for U of M, they started looking into it & are sending us to a geneticist (& other specialist) for both. 

Well because of all of this, they decided to admit her for monitoring & testing.
But because of Covid, only one parent could stay.


FAST FORWARD.... 


12/6 Sunday:
-She had been hooked up to EEG testing since around 1am, until about 3pm or so. 9am we had an EKG done, we had seen probably 10 dr's by then.
Later in the afternoon neurologist called our room and told me her EEG had came back abnormal, & that she was having multiple misfires.

So now at this point they want her on an anti seizure medicine.

-4pm and we are headed down for an MRI.
Something about watching your tiny baby being placed in that machine is numbing...
Especially when you can still hear her crying with ear plugs & head phones on

12/7 Monday:
-Opthlamology called me for pictures of her eyes
-I get a call from the team of neurologist I had been speaking to, to go over her MRI results. The Dr begins to tell me that her MRI comes back abnormal as well & my heart immediately began to hurt.
They told us that on the right frontal lobe of her brain the MRI has shown that she has:

-enlarged blood vessels
-restricted blood flow
-mini strokes (so small that you wouldn't even know she's been having them by looking at her)
-& that the surface of her brain has abnormal vessels & shows calcification.


UPDATE:
1/7/21:
We went in for Aspen's (2nd MRI) 1st sedated MRI at Mott's Children's at 1:30, everything went great procedure wise.
We didn't leave until 5pm, 15min into our drive the Dr calls us & tells us to pull the car over, as she wants to go over the results of her scan.
Then, we knew something was wrong.
She proceeded to tell us they found a brain bleed with this scan & advised us to come back to the ER & they would have a room waiting.
We were there until 1am, as they couldn't find a reason as to why this is happening to her but thankfully it is not an active one.
But we are to continue monitoring her until her next MRI to check the progress. 





All anyone hopes for when they are having children, is for them to be healthy.
I would never wish any of this on my worst enemy.
So please, i ask that you please send prayers and good vibes for Aspen ❤


"Sturge-Weber syndrome (SWS) is a rare disorder characterized by the association of a facial birthmark called a port-wine birthmark, neurological abnormalities, and eye abnormalities such as glaucoma"




**But now, we are left with hospital bills from our stays, seeing specialist after specialist. And with us having to continue to have to see multiple Dr's & specialists each month, have tests done regularly, we have been left with such heavy medical expenses, as well as time off of work for myself and my husband while we also care for our 2 year old son.

We are so unsure of what the future holds for our baby, but we know that we have such a long road ahead of us.
We greatly appreciate any help during this time, to help make sure our daughter gets the best care possible**


❤❤❤ The Dear's

#SturgeWeber #RareButAware #PortWineStain #AspenDearStrong

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Organizer

Marlene Dear 
Organizer
Fowlerville, MI
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