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Oli is just a little quirky.

3 Feb

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“Sometimes you just need to look at life from a different perspective.” -Unknown

As the first few days of Oli’s life turned into the first few weeks, results began to trickle in from Oliana’s many tests. And I do mean trickle. Sometimes it seemed to take forever to hear anything back. I guess I can sum up what most of those tests found by saying, they were pretty normal, except… not completely.

My sweet Oli is just kind of quirky.

The cardiologist said that her echo was normal except for a few things. Oli’s first quirk. The right ventricle in her heart was a little larger than normal and there was a small hole in her heart that should have closed when she was born, except that it didn’t. It was very minor.

She had a repeat pelvic ultrasound to check her kidneys. They still had extra fluid in them and then the doctor threw in a bonus quirk. She had 2 uterus’s.

What? I’d never heard of that either.

I was starting to think that I should have paid more attention in nursing school.

Of course, as soon as I got home I Googled “two uteruses”.

Have I mentioned how much I love Google?

Apparently this is not all that uncommon.

Google told me that the there were two draw backs.

Sometimes when a woman with two uterus’s gets pregnant the baby can be born preterm because the uterus’s do not stretch to the size of one normal uterus. The baby runs out of room.

The second draw back was that it is possible for a woman to get pregnant at two different times and have pseudo twins. A baby in each uterus.

Well, Google. I’d say those are pretty big drawbacks!!!

A trip to the endocrinologist revealed that her pituitary labs were normal, except her pituitary gland did not look normal on the MRI. He said that her posterior pituitary gland was ectopic. Which just means that it wasn’t in the spot that it was supposed to be. Oli has had a few more MRI’s since then and I have heard many different opinions about how her pituitary looks.

Is it moving? Changing? Mutating? I have no idea.

I don’t think anyone really has a definitive answer as to what is wrong with the appearance of that gland.

I told you she was quirky.

The rest of the MRI results were normal except….(Yep. You guessed it) for a few things.

Apparently she did not have an optic chiasm or a pineal gland.

Are those important?

Here is what Google tells me about these VERY important pieces of her body.

1543,Visalius'OpticChiasma (2)
The optic chiasm or optic chiasma (Greek χίασμα, “crossing”, from the Greek χιάζω ‘to mark with an X’, after the Greek letter ‘Χ’, chi) is the part of the brain where the optic nerves (CN II) partially cross. The optic chiasm is located at the bottom of the brain immediately below the hypothalamus.

The images on the nasal sides of each retina cross over to the opposite side of the brain via the optic nerve at the optic chiasm. The temporal images, on the other hand, stay on the same side. This allows the images from either side of the field from both eyes to be transmitted to the appropriate side of the brain, combining the sides together. This allows for parts of both eyes that attend to the right visual field to be processed in the left visual system in the brain, and vice versa. This is linked to skin sensation which also reaches the opposite side of the body, after reaching the diencephalon (rear forebrain). This decussation (crossing) is an adaptive feature of frontally oriented eyes and therefore having binocular vision. (Some animals, with laterally positioned eyes, have little binocular vision, so there is a more complete crossover of visual signals.)

Beyond the optic chiasm, with crossed and uncrossed fibers, the optic nerves become optic tracts. The signals are passed on to the lateral geniculate body, in turn giving them to the occipital cortex (the outer matter of the rear brain).[2]

250px-Illu_pituitary_pineal_glandsThe pineal gland (also called the pineal body, epiphysis cerebri, epiphysis, conarium or the “third eye”) is a small endocrine gland in the vertebrate brain. It produces the serotonin derivative melatonin, a hormone that affects the modulation of wake/sleep patterns and seasonal functions.[1][2] Its shape resembles a tiny pine cone (hence its name), and it is located near the centre of the brain, between the two hemispheres, tucked in a groove where the two rounded thalamic bodies join.

The MRI also showed that her optic nerves are so extremely small that they can hardly be visualized. In a few years, they weren’t visualized at all.

And that folks is one reason why my girl does not see and a BIG reason why she does not sleep!

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I Need A Cocktail!

2 Feb

“Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left.” ~Hubert Humphrey

And so it began…

As awful as that first evaluation was, I knew that it was only the first of many. Countless interactions with doctors and specialists, listing endless possibilities of what could be wrong with her. I know that they were trying to help us but, I started to feel like I needed anti-anxiety medication or a stiff drink every time I walked through their doors.

What kind of syndrome, disease, or affliction hypothesis are they going to throw at me today?

Sometimes I knew right away as I rushed home to Google their current theory.

Okay, I know she doesn’t have that!!

Sometimes I came up with my own diagnosis.

Whoops! Cats out of the bag!

I still do that sometimes.

(Didn’t I mention that my special needs mother hat also came with a medical degree.)

I guess in a way I am lucky. I knew right away that something was wrong with Oli. I’ve never had to search out doctors and try to convince them that something is wrong with her.

Ahhh…the silver lining?

On the other hand, I have had to convince them of things that are not wrong with her.

Yes, I promise you she can hear.

Yes, she really can feed herself a little.

Yes, she really can repeat a few words.

Yes, she really can walk a few steps by herself.

Yes, I promise you she does smile and laugh.

You are just not warm and inviting enough to have earned her smile nor are you funny enough to have earned her laugh.

Poking at her probably doesn’t help.

Sorry but, your loss.

8 things I wish I would have known when Oli was born.

26 Jan

“None of us is as smart as all of us.” Eric Schmidt

1. I am my child’s parent 1st.

I am not her therapist, or teacher. I am definitely not her drill sergeant. It’s okay to just be her mom sometimes. Of course, I still have to work with her at home. But, I no longer have that tremendous amount of guilt when I just cuddle her instead of doing physical therapy exercises. I don’t feel guilty when I carry her up the stairs once in a while instead of forcing her to walk up them when she doesn’t want to.

A woman from the Texas School for the Blind and Visually Impaired told me this when Oli was 4 years old. It was the first time anyone ever gave me permission to “just be her mom”. I will never forget that because it was the gift that I had been aching to receive since the day she was born.

2. Think about today.

Boy, does this one catch me up sometimes… I don’t need to worry about the things that Oli will or won’t do 10 years from now. (I really like to do this!) It just weighs me down when I do. I have realized that she can do what she can do today and that is just fine. I really can’t tell you what her future will look like but, for right now, what she is doing is perfect.

3. Don’t be afraid to be Donald Trump

If a doctor talks about Oli while she’s in the room like she is not even there, I fire them.

If a doctor is not compassionate and does not realize the he/she is treating my whole family and not just my little girl, I fire them.

If a doctor or therapist seems annoyed that my 2 year old is crying and my 7 year old keeps interrupting because he wants me to look at his latest accomplishment on his Nintendo DS game, I fire them.

These doctors and therapists have no idea how many times I have dragged my other children to these appointments. How many hours of their short lives have been spent in waiting rooms and in the car driving to different appointments. If they cannot respect the fact that my other children are also affected by Oli’s disabilities, we find someone who does.

4. Google is my friend.

5. Laughter is an even better friend.

6. I probably have Post Traumatic Stress

Oli’s wonderful pediatrician in Las Vegas, Dr. Hyun, told Seth and I this while we were sitting in her office one day.

It could have been our red swollen eyes, lack of matching clothes,all around disheveled appearance and the “Holy shit! What just happened?” look on our faces that tipped her off.

It was the first validation I received that all the craziness in my head had a diagnosis.

7. Functional not Perfect

So many therapists would spend hours trying to get Oli to do things perfectly. She was never successful because the reality is, no child does things perfectly when they are just learning to do something. Special needs or not.

Oli’s new physical therapist, Cathrine, was working on trying to get Oli to stand up from the middle of the floor. (We had been working on this for a couple of years with different therapists.)

She told me on her first visit, “I don’t care how she does it. I just want her to be able to do it. It doesn’t have to look pretty.”

And guess what….Oli did it!

8. Special = Expensive

Having a special needs child is very very expensive. I had to claim bankruptcy when Oli was 6 months old because of the mounting medical bills, co-pays, and things our insurance didn’t cover.

Very Special = Very expensive

(It’s okay. I’ll still take very special, even though it means I’m broke all the time.)

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