Walking with Willow on Diagnosis Road

I knew.
I didn't know what I knew, but I knew something was different about her.  Not wrong, just not...typical.
From the beginning, she was so hard. Even my pregnancy.

*she didn't breastfeed well--as in painful and once every 45 minutes, oftentimes she just never unlatched. She is my third child and I love breastfeeding so for it to be so terrible was hard to take.
*she didn't sleep--at age 2, she still woke up 6-10 times per night and didn't nap very much
*she had colic--she projectile vomited all day long, over and over
*she hiccuped so violently and loudly that people would cringe
*she flapped her arms uncontrollably while she screamed
*she never ever left my body--she was either latched or strapped on
*she wouldn't stay alone with Isaac--which hurt his heart
*she wouldn't stay any amount of time with anyone other than me

and that was just the tip of the iceberg, my friends

Everyone that took care of her ended up exhausted. I felt bad for leaving her with anyone, but I couldn't take her anywhere so I felt trapped.  Almost like a caged animal sometimes. (BTW, all of what I described can also just be a high needs infant, but I also had this feeling I kept tucked away deep in my heart--always pay attention to that.)

When she was 9 months old I filled out a questionnaire in the pediatrician's office that was used to alert us to any delays and she was at least mildly delayed in all areas.  He wasn't super concerned but suggested a Birth to Three assessment which was great with me because we used them for Asher and those therapists changed our lives with him.

We discovered that she had a pretty good case of low muscle tone, wasn't fully using the left side of her body and was delayed in development.  So it began.

She could pull up but it took her 3 months to start moving her feet.  She got it, though.

She couldn't use her left foot well and fell a lot, especially when switching from one type of surface to another, so we used ankle weights to strengthen and steady her. We trained the left side of her upper body to do things including her arm and fingers by holding down her "good" arm and making her use the weak arm.  It was so frustrating and hard. But she got it.

It's a good thing she has such a high pain tolerance because this was hard work and involved trying and falling and skinning her knees and busting her lip and she just popped back up and kept going.

Around 20 months, we realized...wait, she isn't on track with speech.  Cue the speech therapist.  She had 15-20 words that at least I could sort of understand. We first had to work on her focus (of which she had literally zero) which took many months.  Finally at month 7 of speech therapy we started to see some progress, but she had lost about half of those 20 words by then.  She could mimic some sounds, and while she had lost some words that she previously had, HUGE progress was being made even if it wasn't evident to the untrained eye. Her mama saw it and Miss Ally (the SLP) saw it.

During this time, we had her evaluated because of the severe twitching/jerking she was doing in her sleep. Keep in mind, this was BEFORE Asher was diagnosed with epilepsy. The twitching started after she had a febrile seizure during the flu at 12 months and had to be admitted to the hospital.  An EEG was done during that visit.

NORMAL.

After a lot of months of waiting to be referred and then waiting the months to get in, she had a sleep study done.

NORMAL.

Then, Asher (her 7 year old brother) was diagnosed with epilepsy and we started to rethink everything.  What if Lo had epilepsy that wasn't detected on an EEG. We made another appt. Another EEG was scheduled.

NORMAL.

She started to become more clumsy, lose more words, she started to retreat. An MRI was ordered.

NORMAL.

They tested her blood for metabolic disorders and Rett Syndrome.

NORMAL

Another EEG was ordered with a "let's see what it says and go from there" order.

NORMAL.

She wasn't making eye contact, so we had her vision tested.

NORMAL.

She wasn't responding to her own name or loud clapping close to her ear so we had her hearing testing.

NORMAL.

Because of her odd walk and clumsiness, she saw an orthopedist.

NORMAL.

Do you know how much I craved and at the same time hated the word NORMAL?  Do you know the guilt that comes with secretly hoping they'll say "oh, she has this and this is what we'll do."  I felt like I could take a diagnosis, I am MOTHER FLIPPING DIAGNOSIS because of Asher, but I could not take not knowing. I couldn't take seeing things that other people couldn't and not having anything to back up my claims.

Meanwhile, most people around me were like, "oh, she's fine, give her time every child develops differently," and I wanted to rip my hair out. I wanted to scream I KNOW!  DON'T YOU KNOW THAT I KNOW THAT?  BUT SINCE SHE WAS BORN I'VE FELT SOMETHING WAS OFF AND EVERYTHING COMES BACK NORMAL AND I DON'T KNOW IF I'M LOSING MY MIND BECAUSE MEANWHILE HER BROTHER IS FALLING APART!!!!  AM I CRAZY?????? AM I JUST USED TO LOOKING SO CLOSELY AT ASHER THAT IT'S SPILLING OVER ONTO HER? (that last sentence was my biggest worry)

And I felt crazy because about that time things started evening out. Then things would get hard again.   She started covering her ears and right when we thought ok that's a symptom she would stop. She'd have a somewhat typical week...then a week where she wouldn't look at us and she hid her face from everything.  She started to growl when agitated, but she was making eye contact again. She was extremely loving but only to me. She consistently grabbed my neck and made our cheeks touch and to get to sleep she would just roll all over me until she was worn out. She became scared of anything that was flying around from airplanes to moths (even pictures of them). Little insects also scared her, in fact she had a lot of anxiety about a lot of things.  She had a weird habit of hiccuping and burping in an odd way at night. She began growling when frustrated. And the screaming. OH THE HIGH PITCHED SCREAMING AT EVERY EMOTION! Communication has always brought frustration but in different ways depending on the month.

We couldn't tell what was what. Was it Generalized Willow Quirkiness Disorder GWQD (we made that term up) or something more? Finally her neurologist referred her for genetic testing and a developmental assessment at Cincinnati Children's Hospital.

I can't tell you how many hours I lost to Google and Youtube. A loving friend had to say, "Courtney, give me just this day.  Today...don't google, don't look on Youtube for what developmental delays/syndromes look like at her age."  That day, I didn't and I realized how much it was clouding my vision.  I was looking for things to back up what I already believed instead of looking without an agenda. It was also satisfying some urge, too.  I don't know how to put that into words, but it almost felt like a productive addiction.  I still look at times but it's in just a curious way now.

Then, God spoke to me.

Every now and then The Lord gives me a phrase or a line.  Eventually it turns into a status or a blog or a poem. He gave me "Diagnosis Road" and I tucked it away in the note pad on my phone until I knew what it meant. After this day of staying away from the internet, He told me what it was.  He said:

"diagnosis road doesn't lead to a diagnosis, it leads to Me." 

And that is when the deep need to name "it" subsided. Suddenly, I just knew that it wasn't my job to diagnose her as early as possible and that no diagnosis was going to make her better. No diagnosis was going to fix her. No diagnosis was going to make her life easier to navigate. I felt like I missed everything with Asher. I felt guilty and didn't realize it.

I've never wanted Willow "fixed" anyway.  I want Willow the way she came to me and I just want to help her navigate the world in a way that will help her true purpose and passions shine. At times it feels like a label will help me do that but I need to remember that a label, a name,  won't change anything.  Many people reject labels, but I tend to cling to them.

So off to Cincinnati we went. What an overwhelming experience. First, we had a developmental assessment for our sweet Willow. We got there early, so we ended up doing it backwards which was fine and saved us an hour! The first hour was a developmental psychiatrist who played with Willow while I completed a very long questionnaire (which I love! no sarcasm, I love paperwork haha). Next, I spoke with a developmental pediatrician while a speech language pathologist interacted with Willow and we all spoke together a few times.  I brought 4 pages of notes with symptoms and challenges from birth to now because I'm me and that's what I do.

Three days after that, we went to a neurologist to get another opinion on her jerking in sleep and night terrors (her brother Asher who has epilepsy had night terrors for years before we realized they were seizures). We left with no information.  Another proclamation of "something is wrong with her, we just don't know what." He noted her low muscle tone and left sided weakness (but her left side is almost all the way resolved now).

He ordered a 24 hour EEG for mid July but if we don't catch a night terror on it, it's basically for nothing.  Another way to just rule something out. If everything checks out ok, he'll look at her spine next to rule out any problems.

RULE OUT
RULE OUT
RULE OUT

RIP MY HAIR OUT
RIP MY HAIR OUT
RIP MY HAIR OUT

I left these appointments frustrated--not with Cincinnati Children's, but with the not knowing. So I constantly repeated what's written on the photo below.

If no answers after ALL of this, God is still good and Willow is still Willow.

We came back the next week and brought her original MRI for the neurologist to review later and then headed over for the results of Willow's developmental testing. 

The first thing she said was, this doesn't look like autism because her socialization is improving so much and she's interacting with us well  (which we pretty much knew). She showed us Lo's results and she scored "low" in all areas of development. She is 33 months and behaves/tested at a 12-18 month old level. Her speech being the most severely delayed. So she has global development delay which is an umbrella term for "she's delayed in all areas and we don't know why." 

We don't know why

We don't know why

We don't know why

He is still good

He is still good 

He is still good 

Willow is still Willow 

Willow is still Willow

Willow is still Willow


She may be different -- wild-- in ways we can't understand or explain or name but she's a flower like all of the rest of us.  A wildflower, though. Growing where and how she pleases, refusing to stop long enough to be labeled.  Growing in ways that don't make sense to us. Showing us another way....

                        

And with the love and help of her family and a team of therapists she will blow our minds. She will do things we never imagined and reach people that no one else ever could. I don't want to change her, I just want to make sure she has the resources to live out her purpose. To navigate this world. No one can stop Willow the Wildflower.

                    

So I thought I would be able to wrap this blog up neatly one day (I started it 6 months ago) but it's not going to happen, I'm giving it to you in all its mess. That has to be ok. Willow's little body and mind are just immature and maybe interrupted and we'll just see day by day what happens. I'll update the blog if we find out anymore information. 

Diagnosis: 

Global Development Delay 

Sensory Processing Disorder 

Hypotonia (low muscle tone)

Childhood Apraxia of Speech

Anxiety  

Destination: 

Jesus 

                              

                  

**update: her 24 hour EEG was normal :)
If you want to read about the genetics test, click here
At The Base of an Unexpected Mountain