Thursday, May 26, 2016

Miracle Cancelled, A New Diagnosis

It was too good to be true. Yes, Apple's skull surgery has been postponed, but a hip x-ray taken last week has revealed that Apple has bi-lateral hip dysplasia. It should have been caught by the doctors in China at her birth, by the medical exam in Guangzhou, by our Kaiser pediatrician and by the orthopedic specialist at Shriner's, but no, not one of them found it despite their years of medical school and experience. I did, but I thought it was something else, and even now, that something else could be part of the problem, but at least my concerns made the neurologist at last week's clinic visit order a hip x-ray.

I'm not taking the news well. I'd rather have the skull surgery because once it's done, it's over and the recovery is a few weeks and it's fixed. With hips, we're likely looking at spica casts and surgeries followed by more surgeries throughout her lifetime and pain and arthritis.

To make matters worse, Kaiser doesn't have a specialist in our area. We have to travel three hours - yet again - each way.

On top of this, Jie Jie has been having hygiene issues that are driving me nuts! She just doesn't see any value in keeping herself clean. Bathing, brushing teeth, washing hands and face. She'd never do it unless I stand over her. She even pretends to do it, lies about having done it, and says she doesn't know why she doesn't do it. It's maddening!

And on top of that, Sissy's issues are escalating. Today was seriously hard! Specialists are finally mentioning the possibility of autism. I suspected something like that from the beginning, but last November I actually began researching it more thoroughly and believe it would be an accurate diagnosis. Hopefully, I'll find out soon and be able to get the right services lined up.

Blossom is doing well, thankfully. She seems to be coming out of the most hormonal time of puberty and calming down and actually maturing more emotionally.

Wednesday, May 25, 2016

Baby Toad Migration

Rain means toads and frogs and when they grow out of the tadpole stage, they leave the ponds. Thousands of tiny toads appeared everywhere in just one day, crossing roads, hanging out by my back door to eat all the bugs, filling my swimming pool. I had 200 or so in my pool the first day. I got them all out and released them in a safe place then built and exit ramp for them so they could get back out and continue on their way. The next day I removed about 50 and after that just a few per day. I'm happy to say none died in my pool. Each toad will eat tons of mosquitos and we need that, so the more toads the better.

Friday, May 20, 2016

April 2016 Round-up

I've been fostering two little kittens for a couple months. I got them when they were 2 weeks old and they just left three days ago to get spayed and neutered and to been on "display" at the program's adoption site, which is the biggest and best that I've ever seen. While they were being bottle-fed, they came everywhere with me, even to the girl's gymnastics place.


Sissy passed the first level of gymnastics and received a ribbon. The other two big girls began at a higher level and will pass the skills sheet soon and get their first ribbons, too.


This is the trailer I fell off of last month. I'm still in pain, but not all the time now. It sure doesn't look like it's far from the top to the ground. This picture was taken about 15 minutes after the fall when I started feeling strange but still didn't realize how badly I was hurt.


My Firefighter and I went to a wedding and had a good time. It was also fun going shopping with My Firefighter and picking out his new duds. If you've read my blog from the beginning you'll know I design children's clothing, but I also really love men's fashion, too.

March 2016 Round-up

March 28 was Jie Jie's Family Day. It's been five years now that she's been home. Seems like the blink of an eye and just yesterday I was on my way to China to adopt her.

We haven't been to the park much because Apple just wasn't able to safely get around for a long time and there wasn't much she could do because of her little hands that can't grip. Now, however, she's learned to compensate for her hands and she doesn't fall down very often any more so she's loving the park. She was very scared of the swing for a long time, but slowly got used to it and now loves it. She's proud that she can swing now, too, and not be scared.

At the beginning of March, we travelled up past Sacramento into the mountains to visit My Firefighter's family. It started to snow and after barely an hour of huge flakes falling, we scrambled like crazy to leave his sister's place up in the mountains and get back to our hotel at a lower elevation since I don't have snow chains for my van.

Easter was low-key. The girls enjoyed it and were happy.

Awesome Most Miraculous News!


We spent the day before yesterday in the Bay Area. Apple had her craniofacial clinic day. That's when we sit in a room and 11 specialists take turns coming in, one after another, then, at the end of the day after we leave, they meet and discuss each child and make a cohesive plan for their care.

Our great news is that Apple does NOT need frontal orbital advancement surgery at this time and probably not until she is 16 years old or so, if at all! This surgery would remove her skull from the top half of her eye sockets and her entire forehead, remodel it, then reattach it. There are risks. The entire frontal lobe of her brain would be exposed during the surgery, but still covered by the dura mater. Unless they nick it or tear it by accident. There's always the risk of infection, which we've experienced before with MRSA. And, the part I was really worried about, anesthesia emergence complications and allergy reactions, things we've also experienced.

I cried, I was so happy and relieved.

Afterward, we headed into San Francisco to the Academy of Science. When we lived in the Bay Area, we went to the Academy frequently. It was neat watching Apple see it for the first time. We saw the new planetarium show, narrated by George Takei, which was very well done. We made a super quick stop at Ocean Beach, an even quicker stop at IKEA to look at how they design their kitchen cabinets, ate dinner, then headed back home.




We left in the morning at 6am and arrived home just after midnight. It's a long haul, but with the good news about Apple not needing that surgery, I can't say I minded it this time.

Sunday, April 24, 2016

Splat

I took a fall. I went all unconscious for a tiny bit. I'm very sore, but I'm okay.

I've been doing a TON on yard work. We've had several dead trees cut down, most by My Firefighter, but the power company took down two dead pine trees that were a hundred feet tall near several power lines under the condition that they'd leave the wood instead of remove it, meaning, I'd do the removal. During the past three weeks, I borrowed my neighbor's trailer and loaded it twice with the help of my girls and then he hauled it to the green waste dump. It's grueling, exhausting work! Last Thursday and Friday, I had the trailer again and My Firefighter was able to come help. We were tired after the first day, so headed into Friday already tired. After the trailer was nearly full, with three more newly fallen trees on top of all the pine, I climbed up to jump on the stack to mash it down. I reached for a branch to pull it into a better position and it broke. I lost my balance and over the side I went - about a 6 or 7 foot fall.

I landed on my right side with my right arm under my ribs, but I didn't hit my head. My own arm gave me a "Heimlich Maneuver" and knocked the wind out of me. The last thing I remember is being in the air a really long time then not having any breath at all and trying to tell My Firefighter that I fell, but I couldn't get the words out.

The next thing I know, I'm waking up from what felt like a refreshing sleep and feeling quite fine. However, the look on My Firefighter's face wasn't fine. He'd called 911 because I lost consciousness so fast and did something with my arms that looked like posturing to him, a sign of brain trauma and he wasn't sure if I'd start having a seizure or something next. When I came to, though, he cancelled the call. I said I felt fine, but as I started moving around and over the next 20 minutes or so, I realized I was injured and felt strange. My arm was bruised up and my back wrenched and ribs very, very sore.

I didn't realize that falling from 6-7 feet could do that much damage. After all, it's just a little over one of my own body lengths. Now, my neck hurts, too. It started seizing up yesterday and today I have a major headache. I know I didn't hit my head or neck, it's just my body reacting to the jolt of a sudden stop against the hard ground and branches I landed on.

We don't know why I passed out so quickly other than the fact that I have very low blood pressure naturally so an abrupt change in blood pressure from the impact with a loss of air from knocking the wind out of myself so completely can cause psychogenic shock.

We stayed at My Firefigher's house Friday night and all day yesterday so he could watch me for signs of further injury and help with the girls. I've laid around today, feeling pretty miserable. Tomorrow, I hope to start feeling better.

Monday, April 4, 2016

Another Diagnosis

I've started this post many times, deleted some, then all of it. There's no easy way to do it. On top of all her physical special needs, Jie Jie has an ENTIRE PAGE of genetic "changes." This is extremely rare, nearly unheard of.

A little about genetics from KidsHealth.org...
"A person can have changes (or mutations) in a gene that can cause many issues for them. Sometimes changes cause little differences, like hair color. Other changes in genes can cause health problems.

Mutations in a gene usually end up causing that particular gene copy to not do its job the way it normally should. Since we have two copies of every gene, typically there's still a "normal" working copy of the gene. In these cases, usually nothing out of the ordinary happens since the body can still do the jobs it needs to do. This is an example of an autosomal recessive trait.

For someone to have a recessive disease or characteristic, the person must have a gene mutation in both copies of the gene pair, causing the body to not have working copies of that particular gene.

Genes can be either dominant or recessive. Dominant genes show their effect even if there is just one mutation in one copy of that gene pair; the one mutation "dominates" the normal back-up copy of the gene, and the characteristic shows itself."

Of the entire list of gene changes that Jie Jie has, about half are autosomal recessive, meaning she doesn't have the syndrome.

That brings us to the top half of the list of changes. Essentially, the top three changes cause conditions that have over-lapping traits, but one really matches her and it's autosomal dominant. It causes moderate to severe intellectual disability and expressive and receptive language impairment and about a dozen other things that Jie Jie has, as well as a few that she doesn't have (such as dysmorphic facial features). This condition is extremely rare, but well-known in genetic circles.

So, the big question is, "What does this mean for Jie Jie?" It means that there is a reason why she keeps falling further and further behind her same-age peers. There's a reason why she struggles with speech and auditory processing. There's a reason why she can't make sense of days and weeks and months and time and the relationship between numbers and why she can't learn what odd and even numbers are. It also explains why her short-term memory has a few glitches and the problems that brings. And so very much more. Her severe physical disabilities complicate things further because she doesn't have the intellectual ability to care for her needs and make medical decisions for herself.

As of right now, it's believed that Jie Jie's physical disabilities are separate from her genetic disabilities, however, in a few years, scientists may have made discoveries that connect them.

On the positive side, she is still making progress in many areas and no one knows what her potential is. She is creative, caring, curious and joyful.

There's so much more to this than I can share. It's a very hard road. I'm still trying to wrap my head around it.

Thursday, March 10, 2016

February Round-up: Spring at the Zoo & Sweetheart Dance

The African Plain exhibit is open at our zoo now and My Firefighter gave us a year pass for Christmas this year. We have a GREAT zoo here, I love going and relaxing and seeing the animals. The new exhibits are state-of-the-art and further improvements are planned. It was amazing to see the African animals together on a huge expanse of land where they can actually run. We even saw giraffes mating, but they are not currently on the plain, but beside it.

The complex where the girls have gymnastics hosted a Valentine dance for families with kids with special needs, but all families were welcome. We all went and it was super special seeing My Firefighter dancing with each of the girls. I'm sorry our photos are blurry, but the dancing never stopped. There were professional pictures taken, but we haven't received them yet.

February Round -up: Jie Jie's B-Day & Gymnastics

My goodness, she is 12 years old! She grew 4 inches this year but is still very small for her age at 52" tall and about 54 pounds. She's now in the church Young Women's program. It's a big developmental leap for her but everyone is kind and welcoming. For her birthday we had a fire in our backyard fire pit, a first since being in our new home (after 2.5 years!).

All the girls have also started gymnastics at an all-inclusive sports center. We have a scholarship, making this possible. The older girls do Fast Forward (on a grant) first, then Apple has her class for an hour, then the three older girls have class for an hour. It's a long haul Tuesday evenings, I have to pack their dinner, but it's been fun and developmentally helpful. I get to sit and chat with moms, which is very nice, too, especially since many of the moms have kids with special needs and can share that perspective.


After gymnastics class, any child with a birthday that week gets pushed around the gym on the horse and everyone in the class runs after them. It's terrific fun!

Monday, March 7, 2016

Left Hanging

Update 3/10/16: I now have an appointment for March 22!

Complex. There's that word again, uttered by a medical specialist's scheduler.

Four days ago I received a phone call from the geneticist's scheduler. They found something. They want me to come in. They want to photograph Jie Jie then have her leave the room while they tell me all about it. Usually, they like the child to stay in the room and participate in what's going on. They couldn't get me in until late APRIL! I mentioned we have other testing going on that this could affect so they moved the date to April 11. FIVE WEEKS away!

I asked for a phone consultation. Sorry, it's too complex to handle on the phone.

I said I'll read about it first in her medical record. Sorry, they aren't putting it in her record until after they consult with me.

Do they truly think it's okay to do this to people? To mothers?

Meanwhile, Sissy's been having serious behavioral issues. Things escalated shortly after her 17th birthday last November and reached a critical point the week before Christmas. It can't be explained without being very specific and there is an issue of her privacy. More evaluations are being done later this month. It's devastating. Her situation is also being described as complex by many specialists. I'm extremely angry at the people in China who hid/lied about her condition. I'm not alone in this. Other moms with children from the same orphanage have similar situations. Now we are figuring out how to move forward in a positive way.

Sunday, February 21, 2016

January 31, 2016

There was a great snow storm 60 miles from us, right up the mountain. It was the first time the girls had seen snow falling from the sky. It snowed fat wet flakes all day. Going up, chains were required at 5000 feet. By the time we came down, the snow level and required chain elevation was 2500 feet. I had borrowed sleds from some church friends and we had a blast!


It was hard to get sledding photos, but I took these off our video clips...


Sissy


Blossom


Jie Jie


Apple and Mommy


My Firefighter


My Firefighter

Thursday, February 18, 2016

January 21, 2016


Waiting to get the new orthotics.


Waiting for the adjustments to be made on the new orthotics.

We took a 3 hours drive to Shriner's Hospital, leaving at 5am. In the morning, we met with Jie Jie's surgeon about her scoliosis. He ordered more imaging scans, which we did and have to pop in the mail tomorrow, then we'll find out what happens next. In between, we visited a friend, then went back to the hospital in the afternoon to pick up SMOs and orthotics for Jie Jie and Blossom. I wasn't disappointed. Shriner's makes GREAT braces!

Friday, January 15, 2016

Good Morning

It's a great morning! I don't have any morning appointments and my afternoon work was cancelled, the sun is shining after a night of much-needed rain and I began my day with a phone call from My Firefighter, who is back at work across the street after being out sick for over a month, and he said the nicest thing to me. You know, one of those things that just fill your heart with joy and make you feel so loved.

This is his little old lady dog, he inherited her just over a year ago when his dad passed away. I have the cutest videos of Apple walking her when she was still learning to walk well herself. They both move at the same speed - slow. My cat Rose doesn't care if Josie is a dog, she knows a friend when she sees one. My other cats don't mind having a dog around, especially one that is deaf and blind, but it's pretty comical when Josie realizes a cat is near and barks like a dog should and sends them scattering, especially if they've come to see what's in her food bowl.

Wednesday, January 13, 2016

New Year, New Recipes

While winter is here and the temperature outside under 106 degrees, I am enjoying using my oven, but I've also rediscovered my crock pot. A couple months before adopting Apple, I bought a few new cookbooks so I decided to get them out and pick something new to try. I used the Taste of Home's Slow Cooker Favorites and made Slow-Cooked Sauerkraut Soup. I'd never had sauerkraut in soup before and would have been turned off by the title, but the picture was enticing so I gave it a try and I'm so glad that I did. It was really, really good. I can't wait to make it again. I did, however, not read the recipe closely and thought it only made 3 quarts, so I doubled the recipe and realized a single batch was 5 quarts when it didn't all fit into my 6 quart crockpot. I ended up cooking half in the crockpot and half in the electric pressure cooker. They turned out identical, but one took only 10 minutes to cook and the other a few hours. 10 quarts sure seems like a lot, but it lasted for only 2 meals with my crew plus My Firefighter and that's with adding grilled cheese sandwiches to it, too.

Last night, My Firefighter and I made chocolate chip cookies from a new recipe. I found the link to the recipe on a friend's blog and followed it because she posted 3 things that she made that were new to her and wrote that if one can make only one of the 3 things, then to make the cookies, so we did. It was the first time I ever made chocolate chip cookies that stayed soft and chewy and thick. All my cookies in the past got very flat no matter what I did. Click HERE to get to the recipe if you want to try them.

Tuesday, January 12, 2016

First Photos of 2016

The WeeHoo from United Way is GREAT! Apple is comfortable and it's easy for me to pull with my bike. We took our first family bike ride of the year through the neighborhood.

Jie Jie likes taking her doll, Bao Bao, with her. The basket My Firefighter gave her last year for her birthday is perfect for holding just about anything.

Speaking of My Firefighter, he's finally over his pneumonia. I STILL don't have the pictures from our Half Dome Climb, last October, but at least we finally took a selfie together in the matching Made It To the Top shirts that we bought year-before-last.

I've been insisting that the girls start using some of the games and toys we have around here or I'm going to donate them, so they took out Twister and had some fun.

Jie Jie is a cat magnet. Henry, of course, is a total Velcro kitty and never wants to be put down.