Welp, I certainly did not mean to take 3 months to post
another update… I do have a super cute excuse for a distraction (and endless
laundry to do). A lot has happened in
the last 3 months! Emily is now 5 ½ months
old and adding more facial expressions, sounds and skills to her repertoire of
cuteness each day. Every single day, she
does something or just looks a certain way and I stare at her and tell her she
couldn’t possibly get any cuter – but she does somehow. I am crazy in love with this girl. She is babbling more and recently added a gurgly
“g” sound to her conversations with me.
Her head control and strength has really taken off in the last month,
most noticeably during tummy time, which she tolerates much better now. She is now picking her head up off the ground
and turning it side to side with ease.
Still not keeping it up for long, but her endurance is getting
better. On September 7, she rolled over
from her tummy to her back for the first time!! Emily has an amazing physical therapist
that she sees once a week– one of her favorite people – that has helped her
come this far and taught us how to help Emily the other 6 days of the
week. Her physical therapist says that
she is making improvements each week. Emily
might have to work harder to achieve these milestones, but she is tough and
stubborn!
Now to the medical stuff:
Emily started having these odd eye deviation episodes that
made my mommy instincts, along with reading about other children with
hydrocephalus, think seizures. She would
quickly deviate her eyes down and to one side, and keep them there, almost as
if they were stuck, with some beating-type movements. I called her Neonatology team who decided she
should be seen soon to get an MRI and/or CT scan to check her shunt. It wasn’t an emergency but seemed urgent enough
that she wanted us to go to the ER the next morning, since that was the only
way to get an MRI on short notice. So
off we went. After describing her
symptoms and showing video footage we had of the episodes, to oh, I don’t know,
8? Doctors, we were admitted for an EEG (after the MRI and CT scan showed that
her shunt was working properly, thank goodness). The neurosurgery and neurology team agreed
that her episodes seemed seizure like, even though not the typical signs
of one. After hours of waiting, we
finally got to our room for the EEG, in the same unit where she was after the
NICU. (That certainly brought back a lot of memories.) Now, you wouldn’t think
using a marker to put spots on her head would be that traumatizing. Emily thought otherwise. (I’m sorry that your first experience with
Crayola was that way, honey!) Finally, they got 30 electrodes on our screaming
baby and our 24 hour EEG began. We had a
button to push when we saw any abnormal eye movement. They looked through the results and did see
some “seizure-like potential” but no seizures.
Granted, she didn’t have any long episodes like she was having at
home. We were 30 minutes away from being
unhooked and discharged when she had an episode, which came back as a “maybe”
seizure, prompting them to move us to a live room connected to a 24-7 video
EEG. Fun, fun. It’s hard to explain how odd it is to have a
video following you constantly for 2 days, knowing there is a person behind it,
watching our every move, their job to move the camera. If I picked up Emily to feed her, there was
the camera panning out and back in; walking with Emily to get her to sleep,
that camera followed. Since I’m
breastfeeding her, they called to ask how I felt about them videotaping it. I must have lost some modesty having a baby because
I honestly didn’t care and told them to zoom on in, if it meant getting the
video they needed. They still were “camera
shy” about it at first until Bryan insisted “she really doesn’t care!” That “person in the sky” as the nurse called
it, was great at their job, I have to say! In the end, it was mostly
inconclusive. There was one seizure
picked up on the EEG, but it wasn’t when she was having the eye movements. The neurologist said that seizure was
debatable as being classified as one. He
attributed it to abnormal brain activity, which children with abnormal brains
are going to have anyway. Since our case
was complicated, the head epilepsy doctor at Duke took a close look at our
videos. During one of her episodes,
there was no abnormal activity on the EEG, but he said she had a seizure just
based on what her eyes were doing. We
talked medication. We expressed our
concern about side effects. Our
neurologist said he was comfortable waiting to medicate and wanted us to keep a
detailed log for 2 weeks, then reconvene.
2 weeks later after watching several more videos of her and reading the
log, he was still on the fence. He said
there were many indicators that told him it might not be seizures and just
something she does to compensate visually or a behavioral oddity. After about 2 months of these episodes, they
slowly stopped. She will still do them occasionally
but only briefly. Apparently, she likes
to baffle us. Seizures are a possibility
in our future, as children with hydrocephalus are at risk for them. I guess we’ll cross that bridge when we come
to it.
On to lighter news:
Emily had her 3rd cord blood
infusion!!! The process was exciting, as always, and it was a pleasure to see
Dr. Kurtzburg and her team. It was a
struggle to get an IV in our chunky baby – they finally had to do one in her
head. I wish we would have started with
that one, since she cried way less than she did while they tried her arms and
legs. Trey, the musical therapist, came
to sing to her and even let her touch his guitar! We were talking about how bittersweet it was,
being her last one, when they told us they had enough for ONE MORE!!! That one
is scheduled in November, right before Emily turns 8 months old.
We just had a neurosurgery appointment last Thursday. The appointment lasted 5 minutes and cost $40 but it went great! Dr. Fuchs was thrilled with how healthy she
looks, in particular how chubby she is now (19 pounds, 2 oz!) Her shunt and soft spot felt perfect. He was going to do another rapid MRI in
December but he decided to wait until March, when she is 1 year old. I asked if he was going to do a more detailed
MRI where she has to be sedated but he said maybe at some point, later down the
road. My nosy, detail-oriented self
wants to have one done so we can have a better look at her brain but in the
end, I do agree with him that if it doesn’t change the way he would treat her
condition, it isn’t worth the sedation.
We know by now that it doesn’t matter what her brain looks like anyway, it’s
what she can do that matters. And she’ll
show us that on her own, in her own way!
We have a neuro-opthamology appointment on September 24th.
We hope that she will recommend visual therapy.
She denied it once already because she said her exam at 2 months old was
typical. However, Emily is not tracking
objects as well as she should be so I hope by telling her that, she will write
the referral this time. Visual therapy
can only help her, so keep your fingers crossed that she agrees! We also have her 6 month pediatrician
appointment on September 29th, where she will get the OK to start
solid food (yay!) and see if her PFO has closed yet. Oh, and shots for the poor girl.
I will try to update again soon, not 3 months later this
time!
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| EEG baby! |
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| After her 3rd cord blood infusion! (Note the band-aid from her IV) |
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| Raising awareness for Hydrocephalus! |
