Yesterday
was one of “those” days. It wasn't
overly dramatic, but it really drove the point home that this life of raising Dylan
will be different....will be hard. When I am alone with Dylan,
going through our every day activities, I often forget that he isn't just the same as every other 16-month old. He is
making progress, learning new things daily, and constantly impressing me with
his awesome personality. But those
moments where I notice the differences, or where I allow myself to compare him
to other kids his age, are coming more frequently lately. And yesterday was one of those days where I
felt like Dylan’s Microcephaly was hanging over me like the dreary, oppressive, rain clouds
that just moved in over Portland.
The day
started with a physical therapy appointment.
Dylan typically loves physical therapy, and honestly I do to. As tedious
as it is to bring him to so many therapy appointments each week, it is at these
appointments that I get my hope and encouragement. He has been receiving
physical therapy since he was only two months old, and he knows that this is
his time to show off. He always does
tricks for the therapists that he will never do for me throughout the
week! His new therapist and I
were talking about what comes next, and we agreed that within the next few
weeks we will have Dylan fitted for AFO’s (Ankle Foot Orthotics). These are little braces that he will wear
under shoes to help with ankle support.
Honestly, it’s really exciting that he is finally at a developmental place where
these AFO’s are appropriate! In order
for them to do Dylan any good, he has to be upright more than he is
crawling. And, that’s right…Dylan is finally
starting to be upright! He’s been
pulling up to stand for the past week or so, and every day he gets more
comfortable and does it more frequently.
This is SO exciting for me! I get
butterflies in my stomach and a huge smile across my face every time I go to
get him from his crib and find him standing, or turn around to find him upright against the couch!
The therapist was so impressed with the progress he had made in just a
week. And I am really excited that we have
access to the orthotics, in order to make the transition to Dylan taking his
first steps that much easier. But then there is this piece of me that is just
dreading putting those little braces on his ankles every day, and having that constant reminder each time I look at him of how much harder life will be for Dylan.
We went
directly from physical therapy to a music class. Dylan LOVES his music class. Seriously, he comes
alive while we are there. He loves the interaction
with other kids his age, loves the opportunity to bang a drum or shake an
egg. It is the highlight of the week for
both of us. We have been in this class for 4 or 5 weeks, and I haven’t had a
chance to talk with any of the other moms yet about Microcephaly or the fact that
Dylan has developmental delays. Yesterday,
after class, Dylan was playing with another kid about his age (who was running
and talking and developmentally WAY past where Dylan is). The boy’s mom was making conversation with me
and asked, very politely and un-offensively, if Dylan’s head was “that way because
he has that thing where the plates were fused?”
Seriously, she was very sincere in asking, and I was not offended in any
way. I told her that I wish that were
the case, because at this point if he could have a surgery to fix the size of
his head I would opt for that in a heartbeat!
I explained Microcephaly and Dylan’s delays to her, and she was very
sweet. We went our separate ways, and as
I was driving home I realized this was the first time someone had asked about Dylan
just based on his appearance. Kind of a
big moment! And it wasn't nearly as
scary or intimidating to talk about as I always imagined it would be. But it also made me wonder how many hundreds
of people have met Dylan and looked at his little flat head with it’s short
forehead and wondered…but not had the courage to ask. And honestly I was so thankful for this lady
being willing to be the first! Just like
I talked about a couple weeks ago on Microcephaly awareness day, the more
people that know about Dylan’s differences, the easier it becomes for me to
raise him in this world where everyone compares everything.
Our third
stop for the day was up at Dornbecher Children’s hospital for a swallow
study. I have been putting this off for
months, hoping that Dylan’s eating and drinking “problems” would eventually
resolve themselves. He has been a wonderfully enthusiastic eater since the day
he was born, nursing great from the start and taking to solids like a
champ. To date, I don’t think there is a
food that he has rejected. That said, at
16 months I still have to cut all of his food into tiny little bites (almost as
if it’s already been chewed), and drinking out of a straw, sippy cup, or even
bottle is a huge mess (more comes out than goes in). And the drool! Shirts are soaked within minutes of putting them on. His speech therapist has assumed all along
that this was simply a motor planning issue in his mouth – that he would eventually
learn to control the muscles of the tongue, lips, and jaw better in order to
eat more efficiently and control the excessive drooling. During the swallow study we fed him liquids and solids laced with barium and watched his swallow on an x-ray. We were looking for reflux, liquid creeping
into the nasal passages or airways, or other red flags. I told the nutritionist that I was really
hoping we wouldn't find anything concerning, and that she would wonder why the
heck we had bothered to come in. Unfortunately
this wasn't the case. Dylan wasn't aspirating
liquids to the point of choking or coughing, but just about every other gulp of
liquid he took would sneak behind his epiglottis (that little flap that
protects your airway). She was shocked to hear he didn't have chronic bronchial infections. He also had
enlarged tonsils, which were trapping liquid, and the presence of reflux (which
we treated as a baby, but haven’t been treating for the past 8-10 months). In addition to all of those issues found on
the x-ray, I also learned that he has tightening of his lingual frenulum AND
his labial frenulum….those little flaps of skin and muscle that connect your tongue to the floor
of your mouth and your upper lip to the center of your gums. Both are tighter than they should be and need
to be cut in order to allow him to move food and liquid around in his mouth more efficiently (luckily it is a simple laser procedure). Sheesh!
There were so many things that came from this short study, and I could barely
absorb everything the doc was telling me!
Long story short…visit a specialized ENT to snip the frenulums and
evaluate the tonsils, work with the primary care doc to get the reflux back
under control, and…the most disturbing for me…give him thickened liquids for
the time being in order to prevent the aspiration into the airways. So, until further notice, I have to mix a
solution into everything he drinks in order to make it the consistency of thick
nectar or thin honey. The poor kid can't have a glass of water without this “THICK IT” product in it! I just can't wrap my brain around how inconvenient that will be. And, so far, the first 24 hours have been a
disaster. Who wants their milk to be all
thick and textured? Not Dylan, apparently, because
more has come out than has gone in. I’m
really hoping we can get the hang of this before he ends up dehydrated!
So…what a
day. I feel like, despite Dylan having
Microcephaly, so many days for us are just “normal.” Not necessarily “normal” for a typical
16-month old kid, I know that it’s not “normal” to have 3-5 therapy
appointments a week, and it’s not “normal” that Dylan isn’t saying any words or
walking or understanding verbal cues.
But we have developed our own definition of “normal” and for the most part it has been
ok. And then we have a day like yesterday, when it became so
much more apparent in all these unrelated ways just how far outside of “normal”
we are living. I think this life of
raising a kid with special needs is going to be hard! I don’t often admit it
and I know it could be a whole lot harder than what I am experiencing, but
sometimes I have a tendency to sugar coat and only acknowledge (both publicly and in my own mind) the exciting
advancements that Dylan makes. I have no
doubt that there will be days that are much harder than yesterday was, and many
many days that are a whole lot more exciting and rewarding, but I think yesterday was just one of "those" days that us mamas raising kiddos with special needs experience from time to time.
Thanks for
listening!
I'll leave you with a little bit of adorable. The video is of the first time we found Dylan standing in his crib. You guys, Jack was more excited than I have ever seen him (I love that kid!), He heard Dylan talking in his crib after nap, and went in to say hi. When he saw Dylan standing up, he came running to find me, screaming and yelling "MOM! COME QUICK!!" (Scared me to death). Jack immediately grabbed his "camera" and started taking pictures of Dylan. The pride flowing from that big brother over his little bro's accomplishments is enough to melt this mama into an emotional puddle. And, as you can tell, Dylan loves the attention of his big brother!
