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.



Last Photos of 2015


Hanging her candycane from Sunday school on the tree.


We received this gingerbread house as a gift. It had so much beautiful detail! I was a little sad when I had to break it so we could eat it, but our Home Teacher, who had made it, assured us that it was meant to be eaten and it was super good!



Wednesday, January 6, 2016

Post-Adoption Learning Center

A commenter left me this link today and whoever, I am eternally grateful! I'm just starting to read the various articles, but it's exactly, EXACTLY pertinent to my girls' situations!

Post-Adoption Learning Center

Here are some examples of the articles on this site:

Transition Planning for Internationally Adopted Adolescents with Educational Handicapping Conditions

Tempo {temper} Tantrums in Adopted Children

Cumulative Cognitive Deficit in international adoptees: its origin, indicators, and means of remediation

Friday, January 1, 2016

Happy Birthday & Happy New Year

The past few days have been a great ending to 2015 and a wonderful start to 2016. A few days ago, My Firefighter returned from out-of-town, where he spent the holidays with his daughter and her husband. He asked us all to meet him in the terminal, not just pull up to the curb. It was a great idea since my own anticipation of his arrival, and the girls' excitement, was very fun. I admit we got to the airport quite early. One of the local culinary academies made a display of Gingerbread Houses Around the World, so we had a lot to look at while we waited and a video to watch on how the gingerbread village was created.

I'd warned the girls that they can't run and meet him until he passed the secure area, but Apple didn't get it and shot toward him and straight into his arms just a couple feet inside the demarcated area. It was darling! The guards must have thought so, too, they smiled at me and didn't say anything (they'd seen me point out to the girls the no trespass area).


On my birthday, which is on New Year's Eve, My Firefighter took me out to my favorite restaurant, a Brazilian place with a fantastic buffet and a never-ending flow of delicious meat, chicken and poultry on long skewers that is served to one's table, followed by cinnamon pineapple also cooked on a long skewer. We'd gone there a year ago mid-way through December and I looked forward all year to going again. Then, we did what only nerds do and went to see Star Wars AGAIN in the same month! It was just as good, if not better, the second time because we noticed more details and My Firefighter had just given me the soundtrack and we'd been listening to it in the car.


We ushered in the New Year at home, not because we are nerds or "old" but because we wanted to. My firefighter has been healing from pneumonia for over a month, hence his tired appearance in recent pictures, and it's just gosh darn nice having some quiet time together. Midnight came and we stood outside, in a safe place, as idiots around the neighborhood shot guns into the air, multiple rounds at a time. It truly sounded like a war zone outside. Then we went inside and relished our quiet time, saying good-bye to 2015 and welcoming in 2016 and all that it may bring.

Saturday, December 26, 2015

Christmas Dinner


After unwrapping the gifts, I was pretty tired, I even contemplated taking the girls out to a restaurant for Christmas dinner. I changed my mind after a good breakfast, one that was a gift, actually. Last night our neighbor brought over a frozen breakfast casserole and I let it defrost during the night. All I had to do was warm it up in the microwave. It revived me enough to start cooking and keep cooking. Granted, I did cheat this year quite a bit. I had a store-bought frozen apple pie and the pie crusts I used for my pumpkin pies were frozen, too. But I did do the 16+ pound turkey (in an oven bag) myself and stuffing, carrots, mashed potatoes (from flakes), green bean casserole and homemade cranberry sauce.

This is my old cat, Rose. She's 15. She's not food motivated, she'd rather be on my lap than eating off my plate, so when she went for the turkey, I went for my camera and I love this picture. Her table manners are impeccable, no hands (feet) on the table!


Now, I'm tired. Too tired to sleep. I'll try reading and undoubtedly fall asleep with the light on and find the book under the sheets and my glasses on the floor in the morning. I'm going on strike next year unless I have another pair of hands to help - at least someone to supervise the kids while I cook. On top of doing all the Christmas Eve stuff and Christmas Day stuff, and all the cooking, I even managed two loads of laundry, cleaned the kitchen (with the help of the girls) and deboned the bird.

Friday, December 25, 2015

Merry Christmas




Does anyone remember this doll from June 24, 2007 when I first bought it? HERE'S the post. Back then it symbolized all my hopes and dreams for motherhood and a little girl that would come from China. Back then I never imagined I'd end up with four daughters from China or that it'd take so long to get them and that the road would be so incredibly difficult once they came home.

This year is winding down and coming to a close and so is a phase of our lives. I have new hopes and dreams as I rebuild our life after learning that our future is going to be much different than I thought it would be. There is a new direction and adventure just waiting for us. I know there is an incredible community of special families waiting to welcome us.