Tuesday, June 28, 2016

Brain MRIs, Brain Damage & Intellectual Disabilites

A question from one of my commenters is worth a post of it's own because I've asked the same thing.

"How did they determine she is not autistic? We had our daughter's brain MRI done a few weeks ago and it came back normal. No brain damage or injury. I was shocked!!"

First, I'll address the MRI part of the question. Sissy and Jie Jie's brain MRI also showed normal brain structure except for a slight thinning of the corpus colosum in Sissy's brain.

"MRI can be used to diagnose disorders that cause changes in the brain such as bleeding, alterations in brain tissue or structure such as brain swelling and infiltrative disorders such as inflammation or brain tumors.

MRI can be used to diagnose stroke, which occurs when blood flow to the brain stops. Two major types of strokes are ischemic, caused by a lack of oxygen reaching brain tissue due to artery narrowing or blockage, and hemorrhagic, caused by a broken vein or artery. MRI is especially useful in diagnosing ischemic strokes, because they are more subtle and need the higher resolution to view them. Magnetic resonance imaging with angiography, or MRA, can be useful in diagnosing brain aneurysms, weak areas of arteries that bulge out like balloons and can cause strokes or other complications. MRI does not reveal fresh blood as well as computed tomography, or CT, scans do, and often both are used to diagnose hemorrhagic strokes.

MRI scans are often used to help diagnose abnormalities in the brain, such as birth defects, developmental deformities, damage caused by medical procedures, or cerebral palsy, and these scans can reveal either large or very minute brain changes. MRI scans can also be used to diagnose the effects of a traumatic brain injury, or TBI, on brain tissue. MRI can pick up subtle changes caused by the injury, such as very tiny areas of damage or bleeding.

MRI can be useful in diagnosing brain cysts and tumors, especially very small ones or those that are in areas that other imaging techniques like CT scan cannot visualize well. Sometimes a special dye may be injected into the brain before the MRI to help view differences in the adjacent areas of brain tissue.

MRI is superior to other forms of imaging for diagnosing certain brain infections or conditions that result in inflammation of the blood vessels called vasculitis. MRI also can reveal brain abscesses, collections of pus in the brain due to infection or injury. MRI is very important in the diagnosis of multiple sclerosis and can detect the condition in up to 95 percent of the people who have it because of its ability to detect subtle changes in brain tissue. MRI can be quite useful in helping diagnosing hormonal disorders that affect the brain, such as pituitary problems or Cushing syndrome."

An MRI cannot diagnose mental illness or, as in Jie Jie's case, intellectual disability caused by genetic conditions. MRI doesn't show why any of my three older daughters are intellectually disabled. In Jie Jie's case, changes in her genes make her cells unable to do the job they were supposed to do or cause them not to work at all. No one knows the cause of Sissy's or Blossom's disabilities.

As for austism, there are many, many symptoms and characteristics of autism and Sissy had a ton of them, but she didn't have the main ones. In order to be diagnosed with autism, she needed to exhibit at least two of the following: an obsession with something that she couldn't control, OCD such as lining things up a certain way and tantrums if someone interfered, repetitive muscle movements such as hand flapping, echolalia (repeating the same words or sounds several times in a row - the frequency of repetition is key here because Sissy repeats things a lot, but not like a person with autism apparently does), and not knowing they are doing something and not being able to stop it, like escaping/wandering/eloping, they just won't have an awareness of it, won't plan it, etc...

Sissy has ALL BUT ONE of the social symptoms of autism, and many of the developmental symptoms such as speech impairment, she even repeats things and has OCD tendencies, but they aren't to the extreme that a person with autism tends to do them, therefore, the doctors concluded she didn't have autism. The hardest thing to hear was that "she has insight" into her escaping. I heard the word insight and thought the doctor was crazy, because Sissy isn't insightful about anything at all, but in a clinical sense, insight means awareness. She is aware that she is escaping and she even plans it, she even says she knows it's wrong and dangerous. The big question, though, is how much is she repeating what everyone has said to her about it, hence her saying, "I know it's dangerous. I know it's wrong." But, one cannot dismiss the fact that she does plan it and a person with autism who wanders (the terms for someone who leaves safety without awareness) cannot plan it.

All this said, however, there is something else that I learned. Boys have autism more than girls and girls are often misdiagnosed for years and years and years because their symptoms present differently than boys.

Like many other conditions, autism shares symptoms with other conditions. For example, let's look at vomiting. We vomit for many reasons - flu, food poisoning, pregnancy, over eating, motion sickness, etc. Same with headaches, there are many reasons from being dehydrated to having a brain tumor. Sissy's autism-like symptoms are being chalked up to her developmental delays. Remember, developmental delay means that something didn't develop. Will a newborn baby's brain show a defect just because certain centers of the brain haven't developed yet? No, just like Sissy's brain didn't show a defect where her brain failed to develop. Science just can't see certain things and the brain is still a huge mystery.

Our Medical Trip, In Brief

I am still processing what I've learned and can't begin to fathom how I'm going to manage the logistics of what has to happen, but the trip itself went perfectly.

We left Thursday morning and arrived on time at our first medical center, three hours away. The news was hard. Apple's hips need surgery. They want to do one hip first, put her in a spica cast (chest to toes), give her medications to build up her blood supply, and a week later, do the other hip after which she'll spend at least another 6 weeks in the spica cast. She'll lose about half her blood volume per surgery which is why they can't do both at the same time. I'm terrified off how she'll emerge from the anesthesia. The surgeon doesn't think that her hip problem causes the problems I see with weakness, etc... and he didn't seem concerned at all or even helpful so I'll be seeking another specialist to address these issues. I'll get a second opinion on Apple's hips next month at Shriner's.

From this first medical center, we went straight to Shriner's to have Jie Jie's foot braces adjusted. Afterward, we met a friend and her kids at a park and visited for a bit. Then it was about a 2 hour or so drive to San Jose.

We ate at my favorite restaurant down there and stayed the night in a hotel. In the morning, we hit our third medical center for Sissy's ASD evaluation. She has been found at this time not to be autistic. However, girls are frequently misdiagnosed. I was told that her autistic-like symptoms are due to her intellectual deficit and developmental delays. She got another diagnosis, too, that I've known she's had from the day I adopted her, but now it's finally officially in her medical record. It's also due to her I.D.

My Firefighter came with us, thankfully, which gave him the bonus of being able to visit a friend and colleague who is a patient at the Stanford Medical Center. A quick trip to IKEA after that, and we started our journey home, stopping for dinner on the way.

We were blessed to do all of this with excellent traffic flow the entire way, even in Palo Alto!

Tuesday, June 21, 2016

Miracles From Heaven

There is a Living God. He grants us miracles. I got three today and a little one last Saturday. One was super huge. One was huge. One was big, and may turn out to be huge.

I never laid eyes on anything from Homeland security concerning Apple's Certificate of Citizenship. I only found out this year that she wasn't documented as a citizen with Social Security. I went to Homeland Security and they requested a copy of her file and saw that it had been sent, returned, sent again certified mail and signed for. I called the new owners of my old home and they didn't remember ever seeing it, much less signing for it. It's been heavy on my mind. It's more paperwork to get another one and possibly a fee of $400 unless I fill out another form that would approve waiving the fee.

Last Sunday morning I was walking around the block alone and praying. I felt the Holy Spirit comfort and reassure me. I followed His instructions and took my family to church for the last hour. We haven't been in months and months. It was hard, but I knew it was right. Being out with my oldest is hard right now; her behavior is unpredictable.

Suddenly, just a few moments ago, at 1:30am I walked into my office and picked up and large brown envelope at the base of my desk chair. Right at the base of my chair where I've been sitting off and on most of the past three days. I hadn't seen it there before. I've been vigorously sorting and catching up on mail for the past three days. It wasn't there before. I picked it up. I turned it over. I saw that it was from Homeland security. My old address had been scribbled over. My new address was written in. I opened it. It's Apple's Certificate of Citizenship!

Also today I received a call from the ASD clinic in the Bay Area. We got an appointment for a full day evaluation for THIS FRIDAY! Or, she said, we can wait until August. We cannot wait until August. We are under some severe deadlines and behavior issues that need addressing ASAP. My Firefighter was able to get the day off to help even though his department is stretched thin and mandatory over time is being enforced. We will leave Thursday for two appointments at two medical centers three hours north of us then afterward drive to the South Bay, another 2+ hours in the car, stay the night in a hotel (expensive!), and make this Friday's appointment, which is from 9am to 3pm.

Lastly, something else turned up in the pile of paperwork on my desk. I had completely forgotten that Jie Jie was evaluated by Kaiser in July of 2013 exactly one month to the day of Apple being placed in my arms in China. That's about 2.5 weeks after we moved. The top of the evaluation said it wasn't in her file and could only be obtained by written permission from the psychologist who administered the evaluation. This means that it wasn't in the file that was sent to our regional center and I would never have known if I hadn't have found this today. The doctor's name isn't on our Kaiser contact drop-down list on their message website patients use.

I know I didn't get these miracles because I went to church for one hour. I received this miracles because I have faith. It was renewed this week when I watched the movie Miracles from Heaven because I saw myself in that mom as her faith faltered for a time along her hard journey. I examined my own faith and realized it hadn't faltered but that I hadn't been putting energy into it and I remembered a lesson from long ago called Faith Takes Energy.

Last Saturday, my visiting teacher, a sister from my church ward, showed up with a pink miniature rose plant for me and a Happy Father's Day. I was definitely wearing my "dad hat" as I tackled my yard with my weed whacker. The little miracle was that little pink rose bush in a little pot. I'd been missing the roses I'd left behind at my old house. The roses in my current neighborhood were beautiful this year. I didn't know roses grew so well here. I'd moved my roses from my apartment to my house when I bought my first house, but didn't bring them down here to this house and I've missed them, mostly because people had given them to me and I've been missing those people a lot lately, but also their delicate beauty.

God is with me. He has my back. He knew I needed help and He provided me with what I needed most. I am so grateful and humbled.

Sunday, June 5, 2016

A Day In Our Life

What's a day like for us? Today was special because we didn't have to go anywhere. We didn't even go to church. We slept in a bit past 9am and by the time the girls got moving (always hard when we are out of our weekday routine and I change things, like no morning showers because we're going to swim) it was 11am or so. Sissy was already out of kilter, but she ceased to function at the brunch table and spent the rest of the day in what we call the art room. She refused to eat for the rest of the day or speak or cooperate. This is typical for her at least one or two days per week.

After a little bit of yard work, which meant I put weed killer on everything I could and the middle two girls raked one corner of the yard, the three younger girls and I went swimming in our pool. It was my 3rd day of swimming and the girls' second.

It was super hot today so we couldn't stay out more than an hour or we'd all burn, so in we came at 1:40pm.

My Firefighter arrived and he and I put together a very large kennel for some of my cats who have forgotten their indoor manners. I can't blame them at all given what they've had to live through because of my girls. I know that sounds awful, but it's true.

After My Firefighter left, I took down the old smaller kennels and cleaned like crazy around the area. It's nearly impossible to clean my current floor, which is aggregate, but with a 6.5 horse power shopvac and a huge bucket of bleach water that I poured into the floor and my scrubbing brush, I hope to have made a difference. The aggregate is coming out some time this summer and then I'll have a cleanable floor!!! Yay!!!

Meanwhile, Blossom kept herself glued to her school desk for some reason, singing her songs with her CD player nearby and pouring over a book on our solar system. She was happy to be there. She's trying like crazy to understand it so she's memorizing facts in her efforts, but it's a bit of an obsession with her right now and her questions are never-ending.

Jie Jie needed help with her bath and it's now official, she cannot do this unattended any more. Despite my best efforts, she still, at 12, cannot figure out how to blend the hot and cold water and when I came in, she was balanced on the sides of the tub to keep her feet out of the very hot water she'd filled the tub with (remember, it's about 100 degrees outside, too)! It's hard to say if this in a comprehension issue or memory issue or both, but I cannot risk her burning herself or falling, so no more working the water by herself.

Jie Jie also chose to stay at her desk for the rest of the day. She drew and colored a beautiful picture.

I still worry when the girls stay at their desks for so long. I'd have thought they'd get enough of that during the week, but I supposed they just don't come up with a lot of ideas of their own so they stick to their routine even when they don't have to, and it's way too hot to play outside.

Apple puttered around. She played with her dolls and then her puzzles. She helped me with the kennel assembly by holding the bungees and then with the taking down of the old kennels. She loves to help and insists of helping carry in groceries so we safe the light ones for her. She's doing very well and is really getting the concept of time. She's said, "I went swimming last year!" and she asks, "Are we having daycare tomorrow?" I need to teach her the Days of the Week and start working on telling time. She's ready. She's also showing signs of reading readiness. I love that she's got a normal perception of time and of growing up and getting older.

Sissy refused dinner so she went to bed around 7:30pm. The others enjoyed their dinner and went to bed at 8:20pm.

I'm taking a break and will now close this laptop and get back to cleaning and preparing for tomorrow! My goal is to do a tiny amount of yard work each morning before the girls wake up and daycare babies arrive, while it's still cool.

Wednesday, June 1, 2016

Celebrating Four Smooth Days in a Row

It helped tremendously that we were home for three straight days over the long weekend. For the moment, our appointment schedule has eased up a bit. We still have our normal speech, OT and PT, but no extras like tons of evaluations, urine or blood tests, pharmacy runs, eye exams, and other *extras* that became our norm since last November and keeps persisting.

I also had a few brief moments today to feel *normal* again. I shopped at Trader Joe's, something I used to do a few times a week when I lived in my former town and could walk there in only 3 short blocks. Then, on the way home, I found a classical music station on the radio. I haven't heard classical music in so long, I took a nice deep breath, relaxed into it and turned up the volume.