I’m breathing a huge sigh of relief as I begin this
post. I’ve been waiting all summer to be
able to write up a summary of our work so far with specialists, therapists, and
other evaluations. So this post means
our crazy busy summer is winding down, and we can trade in our jam-packed
high-speed appointment book for just a “busy” appointment book, and have more
quiet days at home with nowhere to go.
I’m going to format this post a
little differently than normal, being as factual as possible and trying to
remove the emotional aspects, just because there is so much information to
consider and I could seriously go on for days about everything we have learned
and been through this summer. So please
know, as you read this, that I’m not in shock or denial or emotionless about
any of it. I’m sure you know us well
enough to fill in the blanks of sadness, joy, and growing ever closer to our
Savior through this crazy journey.
Right away at some of her first
check-ups after birth, Libby’s pediatrician in California suspected a major
vision problem. At just over a month
old, she was evaluated by an ophthalmologic specialist, who diagnosed her with
Optic Nerve Hypoplasia (ONH). Dr.
Bothun, our new eye specialist here in Minnesota, described ONH as one of the
most “bang-your-head-against-the-wall” conditions he treats. It’s so frustrating because she has perfect,
mechanically sound eyes, but a severely limited number of optic nerves to
connect with the brain and finish the job.
Because it is a condition of the nerve and not the eye itself, there is
no surgical correction. ONH can, and
often does, improve during the first 2-3 years of life, but the degree of
improvement varies.
The specialist in California advised Gene and
Dede that the condition is often accompanied by hormone deficiencies, midline
brain defects, and developmental delays, so they were encouraged to have an MRI
of the brain, consult with an endocrinologist, and keep a close eye on her
developmental milestones.
Although she had just had a
six-month checkup a few weeks before, we took her in about a week after we got
home in June (7 months old) to meet her new pediatrician, Dr. Erin, and set up
our action plan for specialty care. And
what a plan we got! She told us she knew it was a lot and we could slow down at
any time we felt too overwhelmed. But
she said, “I’m a big fan of hitting the ground running when kids have special
needs, and establishing every possible connection early on, so that if you ever
need it in the future you already have your ‘in.’” That made sense to us… so we
began to attack the list:
1. Physical
therapy to help with an obvious torticollis issue and keep her gross motor
skills on track
2. Occupational
therapy to continue developing fine motor skills, which are a little weaker,
likely due to her vision
3. Consult
with a craniofacial specialist to evaluate concerns with the large flat spot to
the right side of the head
4. Consult
with an endocrinologist to test hormone levels and check for deficiencies
commonly associated with ONH
5. Consult
with an ophthalmologist to confirm ONH diagnosis and establish a baseline of
visual ability
6. Get
an MRI to take a look at brain development, and to understand if poor vision
has also been caused by anything neurological
7. Get
started on the evaluation process for Special Ed services through the school
district, available year-round for kids birth-age three
8. Get
in touch with a County Public Health Nurse to make sure we understand all the
resources available to assist us and Elizabeth
#8 was easy. Dr. Erin actually had a county nurse call us
right away; I think it was the next day already. We got an appointment with her quickly and
got more information than we could possibly use on what kinds of programs are
available in our county. One of the cool
programs we got enrolled in sends us surveys every couple of months of all
sorts of developmental milestones. Not
that every child is expected to “pass” every point of every survey for their
age, since all kids develop differently, but after several months of surveys have
been turned in, they can help us (and the rest of Libby’s team) to recognize
patterns and make recommendations.
#3 was the first specialist
appointment we had in the Twin Cities.
Dr. Erin had been concerned not only about Libby’s head shape and how it
might affect her brain development, but also that her soft spot was a lot more
closed that she would have liked for Libby’s age, and she wanted a second
opinion on that. Dr. Wood was the
craniofacial specialist. He first
addressed the soft spot and thought that she should be fine. He agreed with Dr. Erin that her head shape
was pretty drastically flattened from one side to the other, and he advised us
to have her fitted for a custom cranial cap that gradually rounds and re-shapes
the skull. Tim and I chose to delay that
decision for a while, because he told us that the head shape would not impact
the development of her brain in any way, and we wanted to try a couple
different approaches before resorting to the cap.
#1 and #2 started right away in
early July. The primary concern for
physical therapy right away was getting Libby comfortable with turning and
tilting her head both ways, and using both sides of her body more equally. She had been heavily favoring her right side,
so the left side of her neck was pretty weak.
That alone had been a pretty significant factor in the development of
the flat spot, since she always turned her head to one side when laying on her
back. They also began working on
strengthening her sitting position and working toward being more comfortable in
the four-point position for crawling. In
occupational therapy, they started working a lot with grasping, reaching,
following sound, and overlapping PT a bit with the sitting and crawl
positions. Libby has made a lot of
fantastic progress this summer with weekly visits for both kinds of
therapy. At times I have thought it to
be overkill, since so many kids pick these things up on their own in the same amount
of time it has taken her, without the help of therapists. But then I remember what Dr. Erin said, that children
with special needs can NEVER have too many people on their team and helping
them along. It never ceases to amaze me
how much of what God created us to do is INSTINCTIVE and she just does it
without ever having visually observed it, like smiling and chewing and pushing
up on all fours. At the same time, she
does need a little extra push in some areas, like crawling. Although it’s “fun” for her to experiment
with pushing up and her body tells her that’s what it wants to do, she’s still
lacking the visual motivation to turn that skill into movement or understand
the purpose of travel. She cries and
cries when she’s “placed” in four-point rather than going there on her own, or
when we (or the therapists) try to encourage crawling steps. Well, I would cry, too… she must be so
confused as to why all of us think this crawling thing is so great, when she’s
so much more comfortable and secure on her tummy or back or sitting on her cute
little bum.
On a side note, between PT work
on her neck muscles and the chiropractic appointments we got her into right
away, her head rounded out BEAUTIFULLY on its own within three weeks of the
specialist telling us to fit her for a cap.
So it turns out that was a good call on our part to delay that treatment. PT and OT still continue, although our
schedule is lessening and we’re down to once every 2 weeks, so we just have one
“type” of therapy each week.
#7, the Special Ed Eval, was the
next thing we got going on. I had
actually gotten the ball rolling on that a little bit in May before we left for
California, off a tip from one of our church members. Later on in July, after things had begun to
slow down a LITTLE bit at home (but not much), we started the process of having
her evaluated for approval to receive special education services through the
school district. She was evaluated by
the overall birth-age 3 teacher, who specializes in developmental assistance,
as well as the birth-graduation vision teacher.
After a couple rounds of paperwork and several observation/interview
visits in our home, we just went over our IFSP (Individual Family Service Plan)
with them yesterday for the next year.
We’ll be having weekly visits with the vision teacher, and twice a month
with the development teacher. And the
best part is, everything will be here at home until she’s three years old. Aaaaah, this mama loves that idea after the
summer we have had. Therapy at home in
my jammies with coffee? Yes, please! They have some great goals mapped out for
her for the next year, and will be giving us lots of valuable help and ideas as
far as modifications for setting up the house, mobility training, and general
parenting considerations for a blind child.
#4, Endocrine Evaluation, got
going at the end of July, back in the Cities again. It wasn’t too long of a visit, since it was
just a meet-and-greet with Libby’s new endocrine doctor, a quick physical
examination, and then a blood draw to run labs and do a thorough check of
hormone levels. Most of her levels
looked pretty good, but her thyroid level was low. They had us start her on a ½ pill of the
lowest dose of a common thyroid medication, and asked us to come back for an
additional test of her adrenal gland to help determine if the thyroid
medication dosage could be increased.
The doctor also asked us to have the MRI ASAP because she wanted to get
a good look at the brain to check for common issues associated with ONH, and
also see if her pituitary gland is fully formed.
So #6, back to the Cities a few
weeks later for the MRI and the additional adrenal/thyroid test. That was probably the most awful day we have
had because it was so long and emotional.
She had to be sedated for the MRI, because the scan would take 45
minutes to an hour. So we started the
day by comforting our screaming, terrified baby as the nurses tried one, two,
THREE times before getting a successful IV running. The poor thing was so scared by the third
time. They finally got one strong enough
to administer the sedation, but it would not be strong enough for the hormone
test later on the on the day, so while she was under they did ANOTHER one; all
in all that sweet baby got FIVE IV pokes that day and she still has a couple
bruises almost three weeks later :(
The scan took about 45 minutes
and then it took her about that long to wake up afterwards. We got to feed her but we had to keep the two
IV’s in so they could be used for the next test. When she was awake and fed, we went upstairs
to our own private room since the test would take a little over an hour. What they had to do was give her the increased
dosage of the medication through the IV, and then do five blood draws fifteen
minutes apart to observe her cortisol levels and their reaction to the new
dosage. So in between blood draws we got
to hold her and play with her, but those stupid needles had to stay in, and
every fifteen minutes the nurse would come back and draw again. We were SO glad when that day was over.
 |
| Daddy and Libby discuss the upcoming Packer season in between blood draws |
The MRI did give us some new information
about her brain that will be really useful to us as we move through the next
few years and into her school years.
There are four areas of Libby’s brain that are either underdeveloped or
completely missing. As a result, we’re
now on the lookout for specific delays, balance and coordination issues,
possible learning disabilities, and we’ll have to keep a really close
relationship with the endocrinologist because of some definite serious hormone
issues, aside from the thyroid. Again,
all of these are things we’re on the “lookout” for, nothing that we KNOW she
has or will ever have, just that she’s at risk.
So we pray, pray, and pray some more for our sweet, smiley girl who
continues to grow and amaze us every day.
Since learning more about the specific parts of her brain that haven’t
developed correctly, I’m so amazed at God’s creation that these teeny, tiny parts
control SO MUCH, and at the same time that God has designed such an incredible
system of checks and balances that when entire portions of the brain are
MISSING, a child can continue to grow and develop at a seemingly normal
rate. Amazing.
If you’d like additional info on
the specifics of the MRI, you can message me on facebook. We got a pretty short
“report” from the doctor, so I did a little research and typed out an “extended
version” (I’m sure you can imagine) for our immediate family, with my own
commentary to keep things light :) I’d be happy to share if you’re interested.
So finally, to wrap up the
endless summer of appointments, we completed #5, Ophthalmology Eval, this past
Monday. It really was a nice, drama-free visit after the MRI we had just gotten
:) They did a thorough eye exam with all kinds of lights and lenses, and agreed
with the diagnosis of ONH that was originally given in December. Dr. Bothun, who will be her eye doctor, only
needs to see her annually for the time being, so that he can observe progress
in her eyesight now that he has a baseline established in her chart. He stated what we already knew, that her
vision is extremely impaired with occasional, but inconsistent, reaction to
bright lights. He, too, stated that
there can be improvement to the vision in early childhood, but starting with
the level of impairment that she is, it likely won’t be much at all. We can certainly continue to pray that God
use Elizabeth to defy the odds and stump her doctors, but we also need to
prepare ourselves for the strong possibility that she will never see. Either way, God will use her as a beautiful,
talented, amazing blessing for our family, His church, and everyone who knows
her.
So! There you have it. I know it’s a lot of information at once and
I applaud anyone who actually made it through this whole thing in one
sitting. Even though the summer has
totally flown by, we have had a full three months to establish all these
contacts and process all this information.
We’re SO excited to be on a schedule now that is just the special ed teachers
once a week, therapy once a week, and pediatrician/specialists occasionally and
as needed. What a relief! Maybe now I
can finally clean my house like I’ve been wanting to ALL summer… well, I guess
I better with weekly visits from the vision teacher here at home!
Again, please message me with any
further questions you’d like to ask, either on facebook or e-mail me at megan.redfield.mr@gmail.com I’m happy to share further details, but I
wanted to keep it as short as possible (BAHAHAHA) for today.
To God be the glory, great things
He has done!
