Aspen's Journey
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Aspen is our 6 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.
Well because of this, they decided to admit her for monitoring & testing.
But because of Covid, only one parent could stay in the hospital with her.
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.
1/7/21:
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 ❤
**But now, we are left with sleepless nights, seeing specialist after specialist. Costs of travel commutes from our home to Ann Arbor numerous times each month, as well as time off of work for myself and my husband while we also care for our 3 year old son or paying for care for him.
Well because of this, they decided to admit her for monitoring & testing.
But because of Covid, only one parent could stay in the hospital with her.
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.
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.
1/15:
We went in for a neurologist appointment where they upped her seizure medicine, went over emergency protocol, checked her development & I got to look at the images from her sedated MRI, that showed her brain bleed.
1/20:
We had another MRI to check the brain bleed (or subdural hematoma) and today Aspen did NOT like being at the hospital one bit, or getting the MRI done. Though the test was only about 30min, she thrashed the entire time.
Follow up with Dr afterwards told us it was hard to read the images because of how much she was moving.
1/21: we met with the geneticist. I felt so anxious waiting for this day, hoping to maybe get some answers. They ordered blood draw to check for gene mutations GNAQ to confirm sturge weber syndrome, & Pik3ca, did a full skeletal x-ray after i mentioned being worried that her Left arm seemed shorter than her right.
Now we wait to go over results of the xray & 4-6 weeks for the results.
4/29:
We saw the genetics Dr. at U of M again for a full panel screen, which involved my husband & I sending in our samples as well & tested for over 20 thousand gene mutations. Unfortunately it takes 3-4 months for the results to come back
7/16: We are notified that her results are in & she has a mutation in her ARHGAP21 gene, we wait until next week to meet with the Dr & counselor to go over these results & find out what this means for our babies future.
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 ❤
**But now, we are left with sleepless nights, seeing specialist after specialist. Costs of travel commutes from our home to Ann Arbor numerous times each month, as well as time off of work for myself and my husband while we also care for our 3 year old son or paying for care for him.
We are so unsure of what the future holds for our baby, but we know that we just want to be able to give our daughter the best care possible but it is very hard to do that on our own.**
Organizer
Marlene Dear
Organizer
Fowlerville, MI
