Saturday, March 31, 2012
After asking around on my egroup pertinent to my daughter's special need, the surgeon mentioned in my previous post got bad reviews. I'm sure he's a GREAT surgeon, just not for Jie Jie's special need.
However, a surgeon within my HMO, in my state, got great reviews and is personally and professionally connected the doctor at the leading Center of Excellence in another state that I've been trying to get to!!! This is a new lead to follow up on.
Other Not So Great News, I think I've identified another serious anatomical difference in Jie Jie. It's not unexpected, but I thought she'd avoided this one. Ah, the joys of parenting a child with special needs!
I think this is a good time to share some of my recent feelings that are hard to put into words. Last week, while at my local Children's Hospital, and after the past few weeks of intensive visits to various medical specialty clinics, I realized that the great majority of people around me, for the first time, were people who were not healthy. That alone sort of sucked some life right out of me, like when I have a sick cat in the house and realize it's life is coming to an end and the feeling in the house after the cat has died. If the cat has a prolonged illness before death, I have often also become ill, then quickly well once the cat died.
I am very sensitive to what I call Life Force. It's the gift I have for being able to discern health from ill health at obvious levels and intuitive and spiritual ones. My gift works best with cats and children, which makes sense because that is where the majority of my experience is, like Louis Pasteur said, "...in the fields of observation chance favors only the prepared mind." But, I can often walk past an elderly person of even a plant and know if it's healthy or not. So, being surrounded by ill people really triggers a lot of things in me. It's this gift that told me to take Jie Jie off the over-the-counter medication that the Kaiser nurse had put her on. I'd have done it sooner, but Jie Jie also has had a cold this week and I had to make sure that wasn't masking my sense on this.
Anyway, back to what I'm trying to convey but can't really seem to get it out clearly into words...
Walking into the Children's Hospital last week I felt hopeful, nervous, confident, and downright scared on many fronts, too. Would these doctors finally be the right team? Can I advocate effectively for my daughter? Will we catch any illnesses just from being in this environment? Will I gain valuable insight into Jie Jie's care or condition? Will this be a waste of time? If this is our team, am I ready for my daughter's surgery?
Reading a file and choosing a child with a special need wasn't easy for me because there were so many children I could have fallen in love with. It was God who finally gave my daughter to me and I thought, after reading her file and researching her special need, that two surgeries sounded so simple. Now that she's mine and I'm so in love with her, surgery is the hardest thing to have to face. I feel a tremendous weight of responsibility in choosing the right medical team. I know that my HMO cannot provide my child with the best care. One parent even wrote to me and said, essentially, that we don't always have to have the best, that good is often good enough. I can believe this, perhaps for an appendectomy. But not for the specialized nature of my daughter's special need.
Last thought, with the new information I've gained tonight about Jie Jie's anatomy, perhaps her immediate surgical needs may possibly be smaller than I thought. Later on down the road is where they will be more intricate. The only true way to find out is to put her under general anesthesia for extensive examination.
Friday, March 30, 2012
Jie Jie and I met with a medical specialist today at our local Children's Hospital after getting an outside referral from Kaiser. I'm so happy to say that it was a good experience. He appeared to be very knowledgable, was professional in manor and appearance, experienced, kind, great bedside manner and his nurse practioner was GREAT! He also ordered a test that is standard procedure at the Center of Excellence I've been hoping to be referred to! Jie Jie liked the team, too. The surgeon has referrences appears to have the right kind of experience though not nearly as much as the surgeons at the Center of Excellence in another state that I'd hoped to use.
All of my life, I have never let cultural differences stop me from having any kind of relationship with anyone. For the first time, though, I have to really make a serious consideration and I'd like your comments on this. The surgeon attached to this specialist has a very thick accent. I had him repeat many things many times. I did notice, however that his collegues didn't have this problem. Obviously, they are used to working with him and are familiar with medical terms that I'm just learning. How much would this influence your decision in choosing a surgeon? I will add that I did make sure I had him repeat everything that I couldn't clearly understand so I didn't walk away with any questions, but it did take a lot of extra time. This isn't a communication problem where we aren't getting our information across, it's merely a situation of the surgeon have a super thick accent.
From here on out, the upcoming tests and exams are very invasive, one even requires general anesthesia. I'm starting to muster my courage in order to face this and be strong for my daughter because, ultimately, this will lead to the surgery she needs. This surgery, however, and the treatment afterward, will pretty much determine the quality of life my daughter will have for the rest of her life.
On the plus side, the nurse practioner today agreed with me about discontinuing and over-the-counter medication that the spina bifida nurse practioner at Kaiser had Jie Jie start last week. I actually stopped it yesterday. While it will probably be necessary in the future, it wasn't necessary right now and I'm so happy that this professional agreed and also said that, in this case, I'd know best since I know my child best.
I felt a bit of the weight come off my shoulders today in one area, but feel the weight of the ultimate decision getting heavier. The ultimate decision is whether this is the right surgical team or not. Luckily, I have a few more steps to take in determining this. One, finish the diagnostics. Two, once all the data is in, send it to the Center of Excellence for another opinion and, if necessary, take a trip out there at my own expense, in order to put my mind at rest that I didn't all humanly possible to ensure the best outcome for my daughter's future. After all my research, it will still come down to a leap of faith, both in the team I choose and with God. I'm very comfortable leaving it up to God, but I know that He expects me to do all I can, too, as my child's mother and as His child.
Wednesday, March 28, 2012
One year ago, today, Jie Jie and I became a little family! It feels like only six months have past, at most. I can't believe it's been one whole year! We made a little cake together. Then I decorated it after Jie Jie was in bed last night. We are definitely one happy mother and one happy daughter!
Jie Jie also had her echocardiogram today. I don't have the report yet, but it seemed that everything looked fine except for a unique twist and turn of the decending aorta, which shouldn't ever be a problem. If there is anything else, the tech kept if from me.
Tuesday, March 27, 2012
I participated in a webinar on older child adoption and took notes. I hope these notes will be valuable to other families adopting older children.
Older Child's Reaction to Adoption:
Depression in an older child is often characterized by anger, acting act, and/or risk taking.
Need to control
Fear: fear is based on survival
Older adopted children may never have grieved or processed the loss of their birth families:
They may have been told a lie.
They may not have fully understood the truth.
They may be confused as to why they are in an institution.
They may not want to face to real reasons they are in the institution or the story was made up.
In an Institution...
Life can be like the army.
There is mind-numbing routine.
Care is often impersonal.
The adoptive parent may be the very first person to personally care for the child by choice, not because it's a job for which they are being paid.
There is often bullying.
They may be outright emotional, physical and/or sexual abuse.
A Child's Feelings May Include...
There is something wrong with me.
I must be perfect to be loved.
I'll fail anyway, why try in the first place.
On one is in charge but me.
It doesn't matter, no one loves me anyway.
I need to keep control. If I'm in control, I win. If I'm not in control, I lose.
What New Parents Can Expect:
Arguments over EVERYTHING like you've never experienced before, which is a symptom of fear.
Out of control tantrums.
Refusal to "go along" with family routine or rules.
Lack of appropriate social skills (because we learn these within the family first).
Intense jealousy of other kids in the home.
No affection demonstrated to the new family members.
Child may see family members as rivals for resources.
Institution Life, Due to the Strict Routine, Makes it Hard to:
Develop imaginative play.
Children Living in Institutions:
Mostly likely had no personal possessions so they may hoard or toss things away, even clothes. Clothing and toys were probably brought out of a communal box and distributed, then returned to the communal box afterward.
Lack the ability to see the "big picture" (processes) and understand number concepts. For example, they may have never seen a whole apple and a knife. Apple slices appeared on their plates, they ate them, the end. If you show them an apple and a knife, they may be clueless as to what they are seeing.
May be restless and highly distractible.
Have curiosity but can't process it, so they don't pursue it.
Are limited to thinking in the most concrete terms.
Have difficulty discussing/solving behavioral issues because they've never had their feelings named or acknowledged before. (They need help identifying and naming their feelings, i.e. When you head feels like it's going to blow off, you are angry.)
Don't have wishes or dreams. They may prefer playing video games or watching TV, instead of dreaming of riding a horse or going to the beach because it was never in their exposure or realm of possibilities. (This is true of U.S. children in foster care, too!)
Being part of a family takes effort and time.
Child acts, thinks and processes information in a way like a much younger child would. Match your expectations to the child's abilities!
Remember to meet your child's true needs, not the needs of his/her actual "age group."
Do what you say you will do! A child will learn to trust you if you do.
Avoid Sensory Overload! Kids need to feel comfortable and "at home" first.
Keep activities low key and quiet! Avoid screen time and activities that are solitary or isolating.
If the child has been in school, they may want to go to school right away. Wait at least a few weeks to establish a good home routine and perhaps start school half day at a time at first.
Don't worry about academic achievement for 6-12 months post adoption, even if the child is 12 years old! Even U.S. kids in foster care can't focus on academics for quite some time after moves and adoption.
Stay calm, cool and matter-of-fact.
Avoid being drawn into reactive and/or dramatic behavior.
Know that you did NOT cause your child's issues.
Give and give without expecting much back.
Be able to laugh.
Spending lots of nurturing time with your child is the best way to heal your child.
Change your expectations!
Drop any timelines of expected progress.
Become a cheerleader for every bit of progress, even if it's just that your child puts one foot in front of the other!
Appreciate and respect your child's former life.
Rejoice in getting to know your child!
When explaining special needs to children:
Explain what hurts and what doesn't. (A hand missing at birth doesn't hurt vs. losing a hand in an accident.)
Let kids handle adaptive equipment.
Explain a child's limitations.
In the case of a child coming into a home where there are children with special needs, have the guide explain it to them and even show or draw pictures, if appropriate. If the child with special needs is with you on the adoption trip, make this one of the first conversations you have with your new child and guide. Realize, too, that everything will be so strange to your child that the impact may be less than you'd imagine.
Watching for Sexual Abuse
A doctor will not be able to tell anything physically except in cases of rape, especially repeated rape. Most sexual abuse in institutions like our children come from is that of making the child perform sexual acts on adults. Watch children closely for how they play with peers and younger children, how they treat animals, if they have nightmares, and how they act with adults. Teach children who are already in the home about appropriate touches and private places, i.e. bathing suit zones, and emphasize the need to tell mom and/or dad if anything happens that they don't like or are uncomfortable with.
My agency emailed me today to let me know that my dossier made it to CCCWA yesterday! They will inquire in a couple weeks ago to get a log in date.
Never in my wildest dreams did I imagine when I began this journey five years ago that I'd have a second log in date. I love that I'm going to be able to have more than one child! Dreams do come true!
Monday, March 26, 2012
These are the items I have to send to Sissy in a care package. There is a family travelling to her SWI to adopt their son, the first week of May. Here is what's included:
Two wooden art projects
Rubber mosaic art project
2 mini coloring books
Candy to share
Hair pony elastics
Photo album that I'll fill
I'll take most of these things out of their packaging so they will pack smaller and lighter.
Before then, I'll send a letter to her and the orphanage through Ann, explaining that the package is coming and ask that the family be allowed to see and photograph her, if possible. I'll also include a disposable camera and a journal for Sissy to write in during this time, if she will, and stationary with postage in case she wants to write to me.
Left to right we have Nini, Rubi, and Sam. It's official, Rubicon is going to stay. She gets a family by default, so-to-speak. It's easier to keep her than to keep taking her to the adoption site every Saturday. Most importantly, she balances out the cats by giving Poppy and Henry a friend.
I haven't mentioned Henry much at all this last year but he lost a lost of weight right after I returned from China, he fell below 5 pounds. He had aspiration pneumonia again, but I didn't notice it quickly because I was taking care of my new daughter. However, he responded well to the antibiotics and then Christmas came and he suddenly came alive. With Rubi having fun under the Christmas tree, he couldn't resist and suddenly, he was playing like a real cat, gaining strength and muscle tone. By February, I realized how solid and heavy he felt and thought me might have reached 5.5 pounds. Well, I weighed him and he was over 6.5 pounds!!! It was great incentive to keep Rubi, but with more children on the way, I didn't need another mouth to feed and more litter to scoop.
A very nice family came to see Rubi. I would have been happy for them to take her, but they chose another cat. They could clearly see how bonded Rubi was to my other cats. She kept siding up to them when she was nervous and they'd lick her and comfort her.
So, Rubicon is one of the gang. She and Merlin are almost identical now, big balls of long black fluffy fur with four legs and a tail. She's a happy, playful kitten who talks and clearly loves all of us. I am partial to girl-cats and she's a very girly girl-cat, which I think is adorable. I just wish she was some other color so I'd not get her mixed up with Merlin. I now have three solid black cats, a black and white cat, two orange tabbies, one solid white, and a Sam tabby (can't figure out what color he is). A little more variety would have been nice!
Insurance should be non-profit. That's my two cents. It's the only way that the clients needs will be served. I admire the Taiwan system.
Updated response: I guess I don't know much about non-profits, then. If I say I want medical care put under a governmental system, I'm sure I'd be asking to be fried. Is there truly no fix for this dilemma?
Sunday, March 25, 2012
Newborns' Haven Sparks Debate
Updated: 2012-03-02 08:05
By Xu Wei and He Dan (China Daily)
Yang Li, an employee of the Shijiazhuang Social Welfare Institute, carries a 1-month-old abandoned baby out of the "safe haven" set up by the institute on June 1, in Shijiazhuang, capital of Hebei province, on Thursday. Feng Yongbin / China Daily
Institute sets up shelter for babies left in its care
SHIJIAZHUANG - A child welfare institute in the capital of North China's Hebei province has provided the mainland's first safe haven for abandoned newborns, an act that sparked heated debate among child welfare promoters and legal experts.
The safe haven, located outside the gate of Shijiazhuang Social Welfare Institute, is a cabin-shaped shelter designed to protect babies who have been left in the care of the institute.
Qin Bo, an official at the institute, explained its decision to set up the shelter.
"For many years, infants were dropped off outside the gates of the welfare institute and the drop-off locations extended to streets 100 meters away," Qin said.
"We gave serious thought to what we could do to improve the situation, and that's how the safe haven was invented."
The safe haven, with an incubator and air extractor inside, cost the welfare institute 100,000 yuan ($15,900), but Qin believes the investment is well justified.
Many abandoned infants had birth defects or were seriously ill when parents abandoned them, mostly in the evening or at dawn.
"Some abandoned infants were ice-cold when we found them," Yang Li, who has worked at the institute for more than five years, said.
Yang said mosquito bites and wild animals were potential dangers to babies left on the street.
With the safe haven, babies can be left either at the incubator or in a crib inside. The bell rings after a delay of several minutes and then the institute's security guard comes to fetch the baby. The security guard also checks the incubator every two hours.
Once a baby has been left in the safe haven, staff members from the institute contact police to verify that the child has been abandoned. Later the baby will be sent to receive a health check.
According to Qin, the haven has substantially increased the chances of survival for the infants who have been dropped off there.
Their survival rate has increased from less than 50 percent to 66 percent.
The welfare institute's decision has created controversy among child welfare promoters and legal experts, some of whom say that the decision could encourage the act of infant abandonment.
"Some parents give up a baby girl because of gender discrimination or birth defects. Is it right to allow these selfish parents to give up their children?" asked Chen Wei, a lawyer from the Yingke Law Firm in Beijing.
Chen is worried that this kind of safe haven for abandoned children will encourage some parents to abdicate their legal responsibilities without good reason.
In response, Qin said that statistics from the institute showed that setting up the haven has not encouraged infant abandonment, and abandoned infants are not flocking into the institute.
According to statistics, the institute has received 75 abandoned infants, including 26 abandoned at the haven, since the haven was set up on June 1. There were 83 in 2010 and 105 in 2009.
"For parents, abandoning their babies is not an easy decision," Qin said.
"I don't think parents would decide to abandon babies simply because we set up a cozy temporary shelter. Most parents wouldn't do that even if we set up a haven with the standards of a five-star hotel."
Ji Gang, director of the domestic adoption department of the China Center for Children's Welfare and Adoption, believes the setting up of the haven is meaningful.
"It prioritizes a child's right to survive," Ji said.
"We can read at least one tragic story of abandoned babies in the media every week, and traditionally, abandoned children were dropped off on the street, in front of hospitals or even in toilets. Some died in freezing temperatures or from starvation. Others were harmed by animals," Ji said.
(China Daily 03/02/2012 page7)
Saturday, March 24, 2012
I just popped over to one of my favorit blogs, the link is in my right side menu, Our Place Called Home. Her families medical insurance premiums have doubled every year for the past five years. Yes, they have adopted several children with medical needs, but once the insurance is purchased, how can they raise it due to medical conditions that come up? Medical insurance, I thought, if for when we are sick and need medical care. Why then, after we get sick and use it, does the rate go up? What in the world are we buying it for in the first place? Now, this family is afraid their insurance company will drop them. Can they really do that?
I am perfectly healthy. I have had insurance for five years. In that time, I've had 2 pap tests, 2 dermatology visits, the second because the first one's doctor froze off a pimple instead of a "pre-cancerous" spot, and I had one throat culture. My premium is now at $225 per month, just for me. I pay for Jie Jie, too. It has gone up every year since I turned 40. In Dec. 2009, I ignorantly down-graded my policy, because, as a new home owner, I couldn't afford the rate increase that was starting Jan. 2010. Now I wish I'd never done that, but it's too late now. I have a large deductible and out-of-pocket maximum. Drugs are not covered and neither is durable medical equipment, though the equipment is after I meet the deductible.
I could quit Kaiser and qualify for a great free county program, but I can't because in order to adopt, one must show proof of insurance. If Kaiser could adjust their system to be able to bill the county (they can bill the state, but not the county) then I could get this free program. The first thing the social worker told me when I originally inquired about this program was that I should move to Sweden. The second bit of advice was to ditch Kaiser, which, or course, isn't an option!
How did the United States get so broken? Why can illegal immigrants get federal grants to attend our universities? Why does my school district feed any child under 18 breakfast and/or lunch during the summer regardless of their parents' income? Why do I have to pay for that? Why do students on federal or state food aid have to take the milk and food even if all they do is throw it away? Why is it illegal for them to give another person that food or milk? The janitor at my aunt's school in from Germany. He said hundreds of unopened milk cartons get thrown away EVERY DAY!
Our children come to us from China malnourished and we all know how we feel about that. How do you feel about children in the United States of America throwing away milk in clean unopened cartons that you are buying for them with the money you pay in taxes? Why can't those cartons be saved for the next day or donated or given to others?
I know I've ranted and ranted lately. I know I need to let it go, but I'm afraid to do it. You see, if we all let it go, it will never be fixed. Who is going to fix these enormous problems? Who is going to stand up for what is right?
I finally made it in to our local baby store tonight and tried out some strollers. Several of you recommended the BOB so we started there, but it was as I feared, Jie Jie is too tall for it. Her head is up into the sun shade and past the top edge of the seat back. I guess they are made for 80 kids that are very short and fat.
There was something called the City Mini XT and this is the most promising so far. It had a high weight limit, tall seat back and just enough seat depth to accommodate Jie Jie comfortably. It's easy to push but has a tiny basket underneath. It also reclines.
I'm going to wait to buy anything until I see what resources are available from my local county physical therapy department once we get hooked up with them.
Thursday, March 22, 2012
What sweet letters! DTC means Dossier To China, for those of you outside the adoption arena who don't know. I remember being so worried that my orignal, sent in this same month five years ago, would end up at the bottom of the Pacific Ocean. This time, I don't have time or energy to worry, but I did get a complete copy of it today and put my hands on the original and held it against my heart for a brief moment because these are the documents that will lead to my Letter of Approval, or whatever it's now called. That letter is the official referral that asks if I will accept my child and I have to sign it and send it back to China. Then I get travel approval, consulate appointment and then GO TO CHINA!
Can anyone tell me about how long it's taking for the dossiers to process in the Waiting Child program right now?
Wednesday, March 21, 2012
Sadly, Jie Jie has lost weight through all of this. Not too much, but an entire pound, which is a lot when you only weight 37 pounds. It's my fault for not realizing how many meals would be missed due to all of this medical stuff. I also didn't have so much as a picture book or coloring book in my bag for the first several visits.
I would love hear in the comments section, or on your own blogs if you'd leave a link, how you prepare for your child's medical appointments from a practical point of view.
What do you pack for your child and yourself?
What type of bag do you have?
And anything else I don't know I should even be asking about.
I would also love to know how you explained to new children being adopted into your home about the medical conditions of the children you already have and vice versa, what you told the ones at home about the new one coming in with a serious special need.
...but it takes a LOT, and this last week it was been a TON.
Remember, I'm a single mama, with two businesses, both in my home, a lot of cats, a large house and yard that I take care of myself, except for the new addition of a house cleaner once a week or so, but just for the upstairs, not the daycare area, and I've done the following intense paperwork, beginning the first week in January, without taking a single day off from work:
All book keeping for both businesses,
Attempted employer taxes, but couldn't fathom it, so I hired someone,
Renewed my CIS paperwork, including my homestudy, complete with medical exam, finger printing, etc... in only two weeks,
Started another adoption,
Compiled another complete dossier,
Finally sorted and filed all the piles of mail
And I did my own income taxes - staying up to 4am twice in a row, getting up for work as usual in the morning, then on the third night, stayed up to the same ridiculous hour taking care of all that mail, which meant organizing and labelling all the folders for the various medical forms, bills, receipts, etc...
On top of this, I've:
Taken my daughter to 11 medical appointments and tests in the last month, 9 of them in the last week - truly all in ONE week!
Been back and forth to medical offices getting copies of imaging scans and reports.
I've dealt with medical admin. making appointments they never told me about so I missed them, and then trying to make appointments without the right referrals, or redundant referrals.
We have four more medical appointments in the next couple weeks, one a few hours away.
I spend 2-3 hours a day on the phone with these medical people.
We started a new treatment at home, every three hours, and a new PT daily home regime.
Remember I said I was homeschooling? I still am - barely!
Guess what? I'm all caught up on laundry and have a stash of homemade food in my freezer, but we have gone out a lot, too, which I'm not proud of.
Need To Do List:
I need to wash my hair, trim the claws on all the cats, play with my daughter, spend some time letting her cry over all the scary medical things she's dealt with and been so brave for, especially at home when she wants to let it all out, cuddle, feel safe, only this mama is ranting on the phone to the medical idiots, and also getting important info from the medical geniuses so I have enough knowledge to weed out the idiots, or those simply not experienced enough for my daughter's needs.
I need to have routine maintenance done on the breaks of my minivan - did get the oil changed, though!
I'm going to put away my supermom cape for the rest of the night and go to sleep now, before midnight so I can wake up tomorrow without my stress. If I've had enough sleep, my brain will start functioning more fully again and I'll remember that I'm supposed to call another out-of-Kaiser specialist for an appointment, ASAP, and all the tests that go with that specialist.
And, on top of all of this, remember that after each test and/or imaging scan, I find out more about the differences in my daughter's body. I don't have a spouse to turn to for comfort and reassurance and love or for help with making big decisions. My heart is in mourning for what my daughter has lost and/or will never have. Many of these things we all take for granted and don't even think about - ever. One day she will fall in love and that love will be tested when her medical history and status have to be revealed. I wonder how many men will be scared and leave her over it, or if she'll be so blessed as to find that wonderful gem who will love her just as she is. More presently, Jie Jie is asking about how her soon-to-be older sister will feel when she sees her body and all the therapies, etc... that are becoming our norm.
Through all of this, I've been so glad to be Jie Jie's mom! I can't imagine not having her. I can't wait to go upstairs in a few minutes and watch her sleeping in her bed beside mine. I know that having my daughter is one of the most perfect things God has ever done, even though I am sooo far from being Jie Jie's perfect mom. I was thinking today of what her life would have been like if any of the other families who held her file had adopted her and I'm so glad she's my daughter and not anyone elses. I feel the same fear that Jie Jie's birth mom must have felt and hope and pray that somehow she will know with 100% certaintly that her daughter is loved and cared for and is receiving the necessary medical treatment that wasn't to be found in China. My heart is connected to her heart through our love for Jie Jie, and I know that a mother's love is one of the most powerful forces there is, sacred and in accordance with God's plan.
Nope, not my dossier. That was rather a cinch compared to this. THIS is normal, everyday mail that has me wondering if I touched something I shouldn't have or uttered some magic words by mistake, because the envelopes keep coming and there aren't enough hours in the day to open them all. Tonight one of my friends came over to help me and in three hours we still didn't finish. Now I'm up another night to at least re-stack them so I can let the daycare kids in the door in the morning so I can earn a living! I didn't mention that I stayed up until 4am for the last two nights getting my taxes finished.
I filled one room and part of another with papers. Honestly, the last picture shows how I really feel!!!
Today we had a good day of medical appointsments. Well, we were supposed to have three appointments, but the phone rang at 8am sharp letting us know that the ecocardiogram tech was ill and not coming in today, so we rescheduled. Luckily, we were able to move the appointment we had after that, to earlier.
We began with Physical Therapy, with the sole focus, pun intended, on Jie Jie's feet. She is supposed to get used to placing the bottoms of her feet on the ground, not the sides. We are to do what I already have been doing on my own, plus two more exercises that the therapist gave me, and one I came up with while we were there which is now the therapist's favorite one.
Monday, March 19, 2012
Brace yourselves for another medical rant. I honestly didn't go looking at all. The only thing I did was go up to visit my friend's daughter, R, you know, the once with the ruptured appendix. Well, R has a room mate, a baby, whose bed is by the door. I had to walk past them to get to R's bed. When the dad of the baby was ready to leave, he popped around the curtain to say good-bye to R and started telling his story.
His baby is only 9 months old. His daughter is 17 and grew up with and still has extremely bad asthma, so he and his wife are pros in respiratory stuff. So, SIX weeks ago they notice their baby wheezing and having other strange sounds. They take him to the doctor and the doctor says is a repiratory illness and prescribes medicine. It doesn't get better. They go again and then a third time and get more medicine for other various respiratory illnesses they are guessing that this baby has. They go to the ER at the children's hospital and get more of the same. On their FIFTH visit to the ER, they get more of the same. At this visit the dad dug in his heels and said, "I am not leaving until you take an x-ray of my son. Call the police of you have to, but I'm not leaving!" The doctor gives him static and then finally relents. After the x-ray the doctor comes in and apologizes. The baby has a penny lodged in his esophagus! He's taken into surgery right away to remove it and is now recovering well.
After hearing this, I went to the nurses station, since Jie Jie will most likely have her surgery at this hospital, and asked a random nurse if this is common. She said that it actually is and advised me to be extremely vigilent in informing myself and being ready to advocate for my child all the time and to find doctors that are competent in the areas needed. She was VERY serious about this.
There we were, three families, a rather random sampling, in the same room at a hospital today, all with children who recently experienced life-threatening medical negligence over quite obvious conditions, I have to again tell parents to guard their children WELL!
I did not plan to write a formal complaint about the "nixed specialist" but I've been encouraged to do so by one of this collegues, of all people, because she told me that the advice he gave me in a recent email contains two HUGE mistakes that should have been very obvious after just a glance at my daughter, much less after a consultation with me and her. Unfortunately, I did follow his advice which I just learned causes an immediate worsening of her condition and damages her organs. In case you tell, I am EXTREMELY angry!!! Luckily, I don't hold onto my anger very long, I just have to vent it all out, then I'll be fine, especially once I quite finding out how badly and on how many levels this guy goofed.
Saturday, March 17, 2012
I was finally ON THE COUCH! Today I spoke at my adoption agency in the class called Adopting an Older Child, and I was not a member of the class, sitting on a hard wooden chair, but a member of the PARENT panel, parents who come, with their kids, and speak about our experiences. It's been five years and 3 months since my official journey began (starting with my first agency appointment, not counting the 10 months leading up to that point). This was a milestone for me that I've been looking forward to since the beginning.
My daughter and the two boys of the other mom who was also on the couch with me, behaved exceptionally well. One future mom commented on this, saying how she can't stand to be around most kids because they cry and whine and interrupt. The class facilitator said that what they are seeing is an example of securely attached kids and further explained that the parenting most kids get today is not conducive to secure, happy children. Kids are born with medical interventions that disrupt the normal gentle beginnings of bonding, they are then rushed off to daycare, herded through the day with dozens of other kids, rushed home, fed non-nutritous food, often in front of the TV, then left alone to whine and nag until they finally go to sleep at night, often way too late than is good, all while the parents react instead of act. Of course they are going to clamour for their parents' attention the minute the parents sit down because it's the only time they get with them.
I've just started reading a great book that is highly praised among families who have adopted older children. It's called "Hold On to Your Kids: Why Parents Need to Matter More Than Peers" and it has a very good explanation of what happened in the last 50 years to the American family and childrearing culture. So far, I agree with everything I've read, especially after observing it first-hand as a childcare provider and being a childcare provider I can observe the changes in the children and know the limits of what I can provide for the children in my position of caregiver. I highly recommend this book!
In the previous post I mentioned the experience of my friend's daughter. She called today the clarify events.
Her husband did not take their daughter to the ER, but to the doctor's office. The doctor then told him it was probably a virus and to take her to the lab for blood and stool testing. (My friend originally told me that the doctor was going to send her daughter home.) That's when my friend's husband told the doctor that he wasn't going to go to the lab and that he thought his daughter has appenicitis and needed to go to the hospital. The husband had to convince the doctor of this!
Bottom line is that the surgeon thinks this child's appendix must have ruptured last TUESDAY! They put her on IV antibiotics overnight in the hospital, did laparoscopic surgery the next morning to clean her abdominal spaces of infectious fluid that had spilled from the ruptured appendix, left in two drains, and now she will remain hospitalized for a week and on IV antibiotics after which, she'll be sent home for 6 weeks and then return to have the appendix removed. Apparently, it's safer to do things this way than to operate right away because the doctor doesn't want to cut into healthy tissue while this horrendous infection is raging or it could spread.
So, while these facts point to a less horrendous mistake on the doctor's part, it still could have had tragic results at any moment since the child clearly needed to be hospitalized immediately and treated as this was definitely life-threatening.
Friday, March 16, 2012
Tuesday: Specialist 1 (first time), Social worker, Nurses, Specialist 2 (S2 was cancelled, would have been our second time)
Thursday: Occupational Therapy Consulation/Testing (first time, Jie Jie passed with flying colors so we don't need this), Physical Therapy (first time, yes, we are super glad to now have this), Get home at 1pm and the phone rings constantly, with call waiting, too, no breaks between, I am not exaggerating here at all, and I got off the phone at 4pm. I had Kaiser in a circus ring, each specialist and department calling each other trying to formulate a care plan for Jie Jie. I also found out the ultrasound result indirectly, when one nurse coordinator mentioned the result casually. I was glad to know, but wished it could have been delivered in a way that I had more warning. Referral to the local children's hospital went through so we can see another specialist since the one and only one of its kind at Kaiser is on my "Don't let him near my daughter" list. He's made WAY too many mistakes with me and her and one was seriously wrong medical judgement.
Friday: Blood draw/hep. lock, 2 MRI scans, Attempt to see Specialist 2 again, but it was, again, cancelled. Courtesy call from pediatrician to let me know that she is being contacted by all the departments and being kept in the loop, but when I knew the ultrasound results and she didn't and she said, "You know more than I do," I replied, "Don't say that to me, you're supposed to be the doctor!" She replied, "I'm only being honest with you," to which I said, "And I appreciate it." These things do shake my confidence in these professionals, however.
Next week, on the same day, is Physical Therapy, Ecocardiogram, and training for Jie Jie's new treatment.
Jie Jie does NOT have any symptoms that she has any heart issues, but it's routine to check when one has the conditions she does have, and I agree with this one wholeheartedly.
Then it looks like we have a two week break, unless something else is scheduled, then it's a consultation with the neurosurgeon. Thankfully, Jie Jie doesn't need the surgical services of this specialist, but, apparently, it is the specialist that one consults with after having a brain and spine MRI.
BTW, remember my post about whether or not to do the brain MRI? Since Jie Jie needed the abdominal one, I went ahead and had the head one done, too. That part only took 20 minutes. I saw the images and her brain looks very symmetrical and the ventricals look normal to my lay-person's eye.
This has been a LOT to get through this week. I reminded myself today, that no matter what I felt about it all, my tiny daughter went through it all, too, and while she doesn't have the understanding enough to worry about the diagnosis, she has the worry of it all being done to her body. Those two bad nights she had and the few tears she shed during the blood draw/hep. lock were the only down moments she had. She was cooperative and bubbly, though sometimes a little apprehensive, the entire time. She impressed everyone she met, and I'm still in awe of this little wonder who is my daughter.
Now, go back and watch the video of her dancing and tell me if you see a child who looks like she needs all this medical stuff? The delight of her in that video is what I live with every single day as her mother. Would I adopt her if I had to do it again? YES! Would I adopt another child with a special need? YES! But there is a but... It would be with totally new awareness of what my local medical establishment can provide. I strongly encourage all parents thinking of adopting a child with a special need to thoroughly, and I mean THOROUGHLY, research the type of medical care your insurance and area can provide. Be willing to move if you need to. Just click to read A Place Called Simplicity in the right blogs I read menu to see the lengths this family has gone to for their latest arrival.
Most of all, educate yourselves! Too little knowledge is dangerous, so is not enough since you think you might know it all and you don't. Get over that hump and do your research. GET CONNECTED! I was sooo ignorant about how my healthcare plan worked. My child is paying the price and it's a horrible thing to live with. On the other hand, I know more about her condition that most of the doctors we've seen and I've been their guide. BE ABLE TO ADVOCATE FOR YOUR CHILD IN ALL THINGS AND PLACES AND TO ANYONE!!! Honestly, the needle was a centimeter from my child's vein today when I had the nurse stop and wait. There were three nurses in the room ready to help hold my daughter down and I was able to prevent that from happening by knowing my daughter and myself and listening to myself and that panic growing within me that said something wasn't right and to take charge NOW! The specialist that is off our list is well-respected by all his collegues and comes highly recommended, but he made 5 errors, from small to great. My instincts came on red alert at our first phone consultation, which prompted me to call the center of excellence in another state that specializes in my daughter's condition, and get a second opinion that gave me enough information that lead to the domino affect that nixed him.
As I mentioned, my assistant/friend's 14 yr. old daughter was hospitalized last night for a ruptured appendix. She's been sick for a week, off and on, with what looked like a virus, but the child suddenly said that she needed to go to the doctor and my friend was going to do it the next day no matter what. She even said that when she saw her daughter sleeping the other day, that she looked dead. That was a prompting from God! Here's the short version. Her husband took the child to the ER at the children's hospital and met their practice's on call pediatrician there. That doctor said it was a virus and to take her home and give her plenty of fluids. Her husband, who at one time in his life worked in a hospital as an orderly, and who knows his daughter well, and isn't afraid to speak up to a person in authority, refused and told the doctor to look at her appendix. It became a battle, but finally, this father won. She came out of surgery today feeling and looking so much better! The girl would have died within a day or two for SURE if her dad had taken her home with that ruptured appendix!
I'll give you parents reading this the same advice that I gave my daughter today, "It's okay to be scared. But you can also be brave!" Don't be afraid to offend anyone or hurt their feelings. Remember, they work for YOU! Be reasonable and respectful and be ready to apologize if you make a mistake, but do NOT worry that they'll talk about you behind your back or treat your child badly or blacklist you. I was told repeatedly this week that I've done and am doing a GREAT job, that I have extraordinary insights and skills and that my daughter definitely came to the right mother. I needed to hear this from these professional so badly at this time because this is a scary new world and I don't want to be in it and I don't want my daughter in it, but here we are and I'm going to do my very best in this new world!
Today was Blood Test/Hep-lock Day. I did NOT tell Jie Jie last night because I didn't want her to worry about it and have another episode. I did tell her in the car when we arrived. She made an appropriate 8 yr. old girl groan, and that's all.
Remember, I was taking her up to the Pediatric Sub-specialty Floor where a former PICU nurse that Jie Jie likes and calls her friend, was going to do the stick. We entered a treatment room that was quite high tech. I was surprised since I didn't realized that they have such rooms in the building we were in, but then something suddenly clicked and I realized that this is where kids go for things like infusions, suture removal, and other medical things that are too minor for hospitalization, but can be anything from minor to quite serious.
So they started looking for a vein and then tried getting Jie Jie involved in a game on a cell phone. I don't have a cell phone and I don't have video games for Jie Jie so it's very exciting, but she's not skilled at using the touch screen so it didn't engross her. It quickly became obvious that it was too overwhelming to her so I took the game away and tried singing and talking to her. However, the needle came into view and the tears started. Then she pulled her arm away. I started talking to her again and the nurse was still aiming with the needle, making Jie Jie not able to focus on me. I asked the nurse to wait. She paused, but didn't move the needle away. I get the feeling she was prepared to stick Jie Jie the moment I distracted her. I said, "Wait," again in a firmer voice and nothing happened. Now I felt the stirrings of anxiety in me, like my daughter and I were about to be railroaded, so I repeated myself if a VERY firm and slightly raised voice, "WAIT!" The nurse backed off and then I was fine.
I made Jie Jie look directly into my eyes and I said, "This is going to be done. You can keep your arm still by yourself or we can hold it for you. You have until I count to ten to get ready." I then counted to ten rather quickly and Jie Jie's arm came out on her own, the nurse re-applied the band and Jie Jie cried and said, "Owe, owe," but it was over very fast and the nurse did a GREAT job. They also used numbing spray twice, once when they thought it was a go to stick and again right before the real stick came.
They gave Jie Jie princess stickers and told us both how well we did. I could tell the nurse meant it when she said, "Good job, Mom." I know she liked how I didn't add to Jie Jie's fear and was firm, but still advocating and doing what was best for my daughter. I think that she would have completely waited on my first request if she'd known how I was.
I should mention that I did talk to Jie Jie several times well ahead of this blood draw, but didn't mention it again after her rough two nights. I also didn't practice with her on her doll and I think I should have because, in hindsight, I realize that 7 months from the last draw and 5 from the last IV is too long for her to remember.
Due to Jie Jie's congenital condition, she will have to be under a physician's care all of her life. I'd like her to become comfortable with needles and tests and learn to advocate for herself and know that she has that right. While I am sympathetic completely dying inside that my child has to endure this, I try to be as matter-of-fact as possible. I don't mince words. I pinch the crook of her arm hard enough to demonstrate to her the amount of sting she will experience. I tell her that it's okay and normal to be scared and that she can be scared and brave at the same time. I tell her that she was very brave, to which she comments that she did cry. I respond that crying it okay, that it's normal, and that she is still brave. I also tell her that other children are just like her. I think it will help her a lot to see other children around her in the clinics, and hospital, going through the same things she does.
Later, at the end of the day, I told her how proud I am of her and how strong she is, to which she replied, "Yes!" We had a celebratory dinner at her favorite Chinese restaurant, too.
So, on the technical side...
She laid still in the MRI for nearly 2 HOURS without sedation and taking only three wriggle breaks of about 1 minutes each, while still in the machine. She had a brain and abdominal scan. She did not require contrast, so we never used the IV port. Get this, I removed it myself! The tech recognized that I had some skill and even asked if I worked there. LOL! The tech started to removed it, but he wasn't able to get the edges of the tape up. He could have asked the nurse, but Jie Jie asked me to do it, so I did. I know this is very rare. I also ended up with three pillows and a cushion while I laid on the MRI table. I couldn't stand leaning sideways that long and I couldn't reach her hands to hold them otherwise. It turned out great because I was able to hold her nose closed for her when she had to hold her breath, and I was able to stroke her head, which evened out her breathing. I LOVED being able to lie down and relax and I totally loved the feeling of the vibrations of the machine up and down my entire body. I'm one that loves the vibration of music when I'm in the car. I feel like I'm getting foot massage! As we entered the MRI place, a friend and her little son from church were just coming out. It was interesting how a sense of camaraderie came over me and how normal it made everything feel.
I really want to take pictures of what we are doing, mostly for Jie Jie's sake, but I didn't remember to bring the camera again! I'll try when we go to PT next Tuesday.
My fantastic employee and friend, actually showed up for work today barely holding it together because her 14 year-old daughter had been hospitalized during the night with a ruptured appendix. She knew how crucial today's tests were for Jie Jie and knew her daughter was safe and dopey, but to me it was a courageous and generous service and blessing to me and I don't honestly know if I'd have had it in me to do the same! This is a true friend!!!
Thursday, March 15, 2012
This week is all about specialists. The list is extensive. Jie Jie's care is being pieced together since Kaiser is not referring her to the center of excellence that she needs in another state. To know that someone at a desk somewhere is counting dollars above lives, infuriates and offends me greatly. Kaiser would actually SAVE money if they referred us out!
Well, we finally got to go to physical therapy and the first thing they said was, she needs an orthotic! Duh! I've known that since day 1 and my friend, who arranged for all of Jie Jie's chiropractic care and even paid for it, said it, so did the chiropractor specialist who saw her feet. Why didn't the orthopedic specialist do anything months and months ago when we consulted with him? His final words, there's nothing we can do, come back in a year and we'll take x-rays then.
Other tests this week have shown some things of great concern, but reversible, provided immediate action is taken, and if there isn't permanent damage already, which there does seem to be a little. I'll know more next week after tomorrow's MRI and labs are evaluated.
I got a lot of validation today from key people, especially the physical therapist, who actually asked me, "How did you know to do these things," when I told her all I've done from the start with Jie Jie. She said I missed my calling and should have been a physical therapist! It was a high compliment.
I have received Jie Jie's referral for the Spina Bifida clinic and the first appointment available isn't until June. Remember, Jie Jie does NOT have spina bifida, and attending this clinic isn't the best option, but, in the Kaiser system, it's the only place they can stick her and they say that her spinal anomalies present similarly enough to SB to justify putting her there. Thankfully, all the people I've spoken to so far this week have been GREAT! I especially have to thank the neurologist who totally took it upon herself to organize my daughter's care and arrange all the specialists.
My daughter and I are entering a totally new world, a world that no one ever wants to enter, but so far, I've been able to navigate it alone and do a great job of informing myself and advocating for my daughter. This is what will make all the difference to her quality of life and her potential in the long run.
Doing the dossier paperwork lately has been quite an adventure. Exactly five years ago, I was doing it for the first time. It was a magical time of introspection, dreaming, thinking about who my child was going to be. I'm still waiting for this child.
Meanwhile, due to waiting for so long, I've seen new adoption programs begin that have enabled me to be Jie Jie's mother, and soon, Sissy's mother.
Turns out that this VERY long wait was a blessing in my life.
Wednesday, March 14, 2012
Ah, the eternal question and bane to mothers everywhere! I was getting into a serious meal situation that involved a LOT of eating out, luckily as cheaply as possible and avoiding fast food, but when we ate hamburgers at a fast food place three times in one week, I knew we were in trouble!
I cook lunch for a small herd of kids for lunch every day. These are full hot meals. At some point right before bringing Jie Jie home, I realized I was feeding them quite a nice full dinner instead of lunch. I started to scale it down. After Jie Jie came home, I simplified it even more and got great feedback from the parents. Their kids had better appetites at home for dinner now. The drawback for me was that I spent time cooking for the daycare and would forget to plan for dinner for Jie Jie and myself.
At the New Year, I finally got a freezer and a few books. The best one, by far, is called Fix, Freeze, Feast and I highly recommend it. I, of course, being the thrifty mom that I am, bought it online used. This book doesn't make you fix a regular recipe, cook it, then freeze it, then cook it again. You may have to cook part of it, but essentially, you assemble all of your ingredients and freeze it so that the cooking happens when you take it out and defrost it later. All meals are for triple quantities.
I made the chicken broccoli bake the other night and it was very good. I started with a little more chicken than asked for, so I made four batches. I also used thighs instead of breasts and it was fine. I tripled the broccoli, doubled the seasonings and added others, and the fourth batch I cooked and ate right away, served over rice. Jie Jie gave it her rave, too.
Hints: I cooked the chicken in my pressure cooker in just 3 minutes after browning it a tiny bit in there first. I actually used two pressure cookers because it was so much chicken. I also didn't cut up the chicken, but ran it through my meat grinder with a 3/4 inch plate. It seemed too minced at first, but turned out to be perfect in the end.
The seasonings I added were cumin, cardemon, ceyenne pepper and a little, and I mean a little, salt. Tripling the broccoli was crucial, too, since I don't want to have to prepare another veggie at the time I cook this to meet our nutritional requirements.
I also have in my freezer, curry meatballs, swedish meatballs, shepherd's pie, and a lot of chicken and/or turkey soup.
For four days this week, we have medical appointments. Today was the first of those days. Last night when I awoke Jie Jie at 11:30pm to use the bathroom, she FLEW up out of bed and thus began a four hour panic attack about getting a shot and post traumatic stress stuff. I had explained to her that she might need a blood test and she seemed fine, but as she slept, I think at the time I woke her up she had been dreaming or remembering a time in China when she'd had a shot on her bottom and it was very scary to her and she "cried big one."
This was almost what she was like on the plane coming to the US with me last year, but at that time, she was asleep and could not be awoken. This time, she was awake, but her eyes unseeing, darting around wildly, screaming, thrashing, shaking, calling for her Po Po. She'd let me hold her and try to calm down, but then freak out, again. This went on and on and on. I tried everything, and at the 2.5 hour mark even had her walk around the house with all the lights on then sit at the kitchen table to have a snack, but she wouldn't eat or drink anything.
At hour three, she had physical manifestations of her fear, terrible tummy aches that caused her to double over and grab her knees to her chest and plead for the pain to, "Stop, stop, please stop!" Of course I told her that her stomach wasn't sick, only nervous, and that if she could relax it would stop, but it only helped her a little to hear that.
Around 3am, I got into bed with her in my bed (we co-sleep with our beds against each other) and turned out the lights. She still didn't settle down, though she tried. After I got kicked for the thousandth time, I asked if she wanted to get into her own bed and she said yes and I had high hopes that she was ready to settle, but she didn't. I finally told her that I had medicine to make her feel better and gave her some ibuprofen. After some time, we both finally fell asleep. I let her sleep in until 10am this morning. If I'd had a sedative, I'd have given it to her at the two hour mark - honestly, and I'm all about natural parenting. After all that thrashing and shaking, I hoped the ibuprofen helped relax her muscles and prevent soreness from waking her up and I think it worked well. As for the placebo effect on her tummy pain, I was glad of that, too.
Unfortunately, as I was typing this tonight, she came in, starting all over again. I was pretty strict this time about telling her that her tummy is NOT sick and it's only nervous because she's afraid of her other doctor's appointments and, after some time, she seems to be settling back into bed.
I cannot go another round tonight with her. She got an ultrasound tomorrow evening at 7:30pm, so she can sleep in in the morning, but I cannot, I have to work.
Funny thing, when she awoke this morning, she used a few more Chinese words than I've heard in a very long time and she asked to bring her stuffed monkey, who has not gotten any notice before, to the appointment. When I asked how monkey was, she said he was scared. When I asked how she was, she said okay or just a tiny bit scared. She also asked me not to tell the doctors that she was scared and cried during the night. When I asked her why, she said because of privacy. She so much wants to be brave!
It looks like her MRI on Friday will involve contrast, which means having an IV placed. I haven't told her yet. At the same time, she will have her blood drawn. I've arranged for the nurse of one of her specialists to do it and place a heparin lock ahead of the MRI because they are experienced PICU or NICU nurses and can get a good stick on one try. They will also use local numbing spray and make it as fun as possible. Then, there is a higher chance that she'll be able to relax for the MRI just like she did last time and not require any sedation.
Up until now, I've always given her some lead time in knowing what was coming up for appointments. Now, I'm going to wait until the morning of so she can have every chance of getting a good night's sleep.
I wish I could take the entire week off to spend alone with her, doing super attaching and bonding 101 things together. I know it would make her feel more secure, but that just isn't an option. This is the downside of being a single mama. Please remember Jie Jie in your prayers. She and I did pray together last night to ask Jesus to help her through this and she actually repeated the words of the prayer as I said them, so that she became the one saying the prayer. I was so proud of her, that her faith is growing and growing.
Sunday, March 11, 2012
Look carefully at the second child behind the adult holding the sign on the left. See the little girl with the yellow hair clip smiling? I'd recognize that smile anywhere! She was 9 in this picture, two months shy of turning 10.
I was on another blog and posted were the following instructions on how to search for pictures of your child:
Go to Google translate and type in the name of your child's SWI in English and have them translated to Simplified Chinese.
Copy the Chinese characters and put them in the regular Google search engine.
Click on "images" at the top of the screen.
Browse through the images and see if one of your child turns up! Good luck!
Now, here's what I did... After clicking on the image, it's overlaid on a webpage. On the right, I clicked on Website for This Image, then started copying and pasting the Chinese text into the translator to translate the news article text.
This is an article from August 27, 2007 in which the children of my daughter's SWI are "happy to usher in the first Games..."
"... Social Welfare Institute has organized the first Games, the orphans spent the happiest day of summer vacation.
Games start with the president gave the order, the athletes were queuing admission, they were all in high spirits, high spirits. Sprint, shoot, hula hoop, these ordinary people appear to be normal movement for the children of the orphanage is quite new and not easy.
According to [dean of my daughter's SWI] orphans who are some diseases or disabilities are abandoned by family, the Games is the summer in order to enrich the child's life, let the children live with more happiness in this family, a happy , happy."
Obviously, the translator isn't perfect, but the meaning is clear!
Jie Jie finally got some water time. She hasn't been in the hot tub since before Thanksgiving. Me either, until last night. The dancing video was taken last Sunday after our party. Looking at these, can you believe this child has any type of special need?
In the video, I mention cutting down a bush while Jie Jie is alone in the water, but it's actually a bush nearly against the hot tub, so I was right there the entire time she was swimming, then I got into the water with her for some fun.
Her English lately cracks me up. She's trying out some new words and they aren't coming out quite right in clarity or meaning. Today's new word is "area." Looking at a picture of a princess castle she says, "See the castle area?" meaning the castle itself. Or, as we drove past the kung fu studio where the party last Sunday was held, she said, "There's the kung fu area!"
Saturday, March 10, 2012
Before applying for Jie Jie's US passport, I decided to go ahead with the re-adoption that would give her a US birth certificate, or something like an American certificate of foreign birth. Regardless of what it's called, it will have her name on it with the middle name I gave her so her passport will match.
On one of the forms, it says I can bring a camera. I've seen many pictures of families with the judge who did the re-adoption. I'll bring my camera and take a picture, but only for Jie Jie's sake, in case, in the future, she wants it. Honestly, I'm resentful of this step. I have already adopted my child. It is a legal and binding thing. We are a family. We have been a family for nearly a year! Her adoption documents, visa and citizenship certificate should be enough, in my opinion, for her to be issued this birth certificate without having to go through a RE adoption, before a judge, in a courtroom. It just doesn't have any meaning to me other than another time-wasting bureaucratic, form-laden step.
Thursday, March 8, 2012
I took this video last month. Jie Jie is reading the first book of a series of learn-to-read books. Jie Jie is now on book four. I am also using the book How to Teach Your Child to Read in 100 Easy Lessons. I like this book a lot and it's working, obviously!
In the USA, children are generally taught to read by grouping sounds like a, at, hat, cat, mat, had, bag, etc... For a person like Jie Jie, where English is a new language, it's like trying to say a tongue twister. The words at and hat are VERY similar to her when she hears them and in some cases, she can't tell the difference between sounds. If you have tried to learn Mandarin, I'm sure you've encountered the same problem, especially with the work shi and the various tones to use with it.
Whenever we are now, Jie Jie tries to read the signs and things that we pass. In her workbooks, she is reviewing the alphabet, reenforcing the letter sounds and learning more vocabulary by seeing different pictures in the exercises. Differnt fonts through her off, though.
Jie Jie finds arithmatic easy so far, but remembering the names of the numbers by sight is harder for her. I've been doing flashcards and oral exercises to help her and it's working. I think she'd have been a better verbal learner if she wasn't also learning a whole new language at the same time.
When she has to learn something without knowing the relavance, she resists learning and/or becomes very frustrated and frozen. Once she learns enough to make a connection, she picks it up quickly. Therefore, on the days when I introduce new material, it's torture for both of us. As I get better at teaching her, I'm sure I'll figure out a way to help her through this in an easier way. I admit that I get impatient, too, and that doesn't help either. Fortunately, like I said, she picks things up quickly once she gets the point, and then we have great school time for a week or so until something entirely new comes up again.
It looks like Jie Jie's spinal cord is NOT tethered!!! However, the neurologist is having a neurosurgeon review the MRI just to make certain.
The neurologist also ordered a brain MRI because, "It's routine when there are spinal anomalies." Please give me your opinions on your thoughts of "routine" tests when there aren't any symptoms. The neurologist even said she didn't find anything to warrant a brain MRI other than the fact that it's routine when there are spinal anomalies.
The MRI revealed some good things, too, that have me rather elated. There were parts of Jie Jie that I wasn't sure she had and these parts are there, in the right place and looking the right size. Like her kidneys! There are two and they seem to me to be the right shape and size.
Next week we have several more appointments, a follow-up with the GI specialist, a first meeting with the nephrologist, OT & PT.
How many of you have a love-hate relationship with the diagnostic tests like I do? I truly want to know all the things I need to about my daughter, but I absolutely dread that they'll find something terrible. Then there is what it puts Jie Jie through. So far, the most invasive thing we've done is a blood test, but there are some tests that are going to be very invasive. I shake inside when I think of these, and feel utterly sick, though I've seen many families and children go through it and come out just fine.
This has been a HARD week paper-work-wise. I've had four straight days of intense paperwork related to the adoption and house refinancing and re-adoption and getting copies of the MRI and report, etc... I finally got over a strange sore throat, ear ache and swollen gland thing, and Jie Jie got a streaming cold, which, luckily, lasted only 4 days, and today I ran her ragged trying to deliver, pick up and sign papers from one end of town to another. At the end of the day, she finally stopped in her tracks and started to cry and my newly mature 8 year-old was my tiny girl again needing to be held. It was such a sweet moment even though I felt bad that she was crying and it was all my fault.
Tuesday, March 6, 2012
My dossier for Sissy is nearly complete. All I'm waiting on is my birth certificate. It's the golden document. It's cost a fortune! For those who don't quite understand why adoption, particularly internation adoption, is so expensive, let me give you a little peek:
Certified copy of birth certificate: $47.95
Certification/Apostille at Secretary of State (one day service vs. 14 day service): $20
Mailing fee to Secretary of State: $28
Mailing fee to Courier service from Sec. of State: $28
Mailing of supporting documents to courier: $18
Mailing fee of all docs back to me: $18
Fee for courier service: $65
Fee for State Department: $8
Fee for Chinese Embassy: $20
So, the golden birth certificate total comes to a whopping $252.95!!!
Now, I could have gone snail mail, but there would be no tracking numbers and I just don't have time to wait. I need to get my dossier in since I need to be in China and sign the adoption papers before Sissy turns 14. I've seen a lot of adoptions happen at the last minute, and each one was a marvelous miracle, and if I have to do that, I will, but I'd rather not cut it so fine if I don't have to do so.
All the rest of my documents are from California so they are being sent together in one mailing to each place they need to go, but just the final step alone is $225 for them.
So many more children would be adopted into loving homes if adoption cost less! My birth state does charge significantly less for the apostille for documents used in adoptions and I greatly appreciate that. What I really want to know is why the CIS visa application costs so much. Honestly, what do they do for over $800 to those documents? Why then, after paying all of that, plus a renewal or two, does it cost $404 for the actual visa stamp in the passport? Why should a US citizen pay that amount, after paying so much in taxes, to bring an adopted child home? Don't even get me started on homestudy fees... How hard can it be to write that up after all the documentation checks out? If it's really worth all that in work and effort, please enlighten me.
We came home this evening, and while I was still getting things sorted out, Jie Jie was in the bathroom pulling out another baby tooth. She proudly marched into the room where I was and exclaimed, "I did it myself!"
Jie Jie now has two front teeth on the top and bottom with nothing beside them. Then one tooth, then nothing, then her molars.
We don't do the tooth fairy thing. I tried the first time, but she didn't get it and it just never really came up again. As a child, I really looked forward to the tooth fairy coming, but, surprisingly, it's not something I feel we are missing out on. I've learned that there are so many other milestones that seem much more significant. It's very true that adopting a child out of an orphanage, especially a waiting child, especially once you've seen inside the orphanage, you are totally changed forever.
Monday, March 5, 2012
Yesterday was the local gathering of families who have adopted children from China. For such a small community, there are quite a lot of families who have children from China. One of the families has just returned from China with their third daughter, who is 12 1/2 years old. They've been home now for about three weeks. This 12 1/2 year old was still a little girl in many ways, just with a bit more attitude, that's all. It made Sissy so much more real to me and I'm so eager to rush to China and bring her home! Sissy will be a little girl still, in need of a mother's love just as much as any child, regardless of being called a teenager. She'll be vulnerable and scared, yet so eager to have a family!
On the paper chase front, I am moving right along. Today I got a great surprise in the mail: My 171-H arrived, and it's just perfect! It actually came a few weeks ago, but there had been a mistake in my homestudy so the age of the children being adopted was 18 months to 14 years. I needed it to say newborn to 14 years because I don't know how young my third child may be. I only have rave reviews for my CIS officer because she has always come through for me in very short spans of time!
Also on the paper chasing front, I'm please to say that my dossier is almost complete. I had a HUGE glitch with the guardianship letter that trickled all the way down to my homestudy, which was already at CIS. It would have been a devastating, adoption-ending glitch and it had me utterly paralyzed with fear that my future daughter would never get to have a family, when some fantastic friends of mine, who just returned from China themselves with their fourth child a few days before Christmas last year, came to my rescue. This wonderful family didn't blink an eye, but agreed to do what was needed with open, loving Christian hearts, in the spirit of love and friendship, one mother to another, one adoptive family to another. I am sooo grateful and this story will go down in my family's history forever. I'm sure I can come up with some funny victory sloggan that makes cute fun of our children's special feet, like: "Never Accept d' Feet!"
So, the last document to collect before my dossier is sent to China, is my birth certificate. The certified copy came today, now I have to send it back to my birth state to be apostilled and then on to the Chinese Embassy to be authenticated. I'm having two copies done, just in case I need another one down the road for anything. All together, by the time I get these back, they will have cost well over $150. Imagine that, just to have a birth certificate to send to China!
Friday, March 2, 2012
I found out yesterday that the Shriner's Hospital nearest to me doesn't do MRI scans. I went ahead made the appointment for one for Jie Jie today with Kaiser and we did it tonight. She cried when I told her. She readily admitted she was scared. We've been talking about it and also practiced being still and watched some videos for kids about it. It all paid off. Tonight she did the entire MRI without interruption, without medication of any kind, and didn't cry at all! I wish I'd brought the camera with me.
She was so proud of herself! I am very, very proud of her! This was a really big deal!
What we are looking for is a condition called tethered spinal cord. We'll know by Tuesday if Jie Jie's spinal cord is tethered or not. Please pray that it's not or she will need spinal surgery. It's highly likely that it is tethered, though.
Side note: I had a metal barrette in my hair and the MRI magnet was so strong that it pulled it up, opened the clasp and the thing went flying out of my hair, whizzed past my hand as I tried to catch it, and stuck to the MRI machine. Fortunately, no damage was done and we all had a good laugh.
Thursday, March 1, 2012
Yesterday was Jie Jie's first consultation with her neurologist, a woman with a 5 yr. old adopted from Korea. She seemed experienced and competent and great with Jie Jie and with me. She and her dept. head feel that Jie Jie should be sent to the Spina Bifida clinic. Jie Jie does NOT have spina bifida, but they believe that some of her issues are similar enough to be best served there. These issues are peripheral to her main special need. This deptarment will put me in contact with people who can help me with resources. I'm about to step into a new world.
One of the things that has had me very worried is what to do when Jie Jie out-grows her stroller but still needs it. She most definitely doesn't even come close to needing a wheelchair, but she cannot walk more than 1/2 - 1 mile without pain and limping for the next few days. Once she's taller, she'll do better because each step will cover more ground, but for now, she's still the size of a big 4 year old. I looked online at special need strollers. They are insanely expensive!!! They are also pretty ugly and don't have much seat padding, which is essential to Jie Jie. The most affordable ones don't recline and I like that option so Jie Jie isn't sitting on the same part of herself for too long. I'm not getting exercise right now, the real kind where it feels a bit aerobic. It's hard to push her stroller fast enough without straining my shoulders and back. I was thinking of looking for a jogging stroller, one with the really big bicycle tires. I'm going to start checking craigs_list.
Since turning 8, I get even more reaction from people who ask Jie Jie her age. If they ask Jie Jie directly, they don't believe her and look at me for her "correct" age. When I tell them she is, indeed, 8, they comment. I have mixed feelings about this. Often it's kind of cute, but will Jie Jie realize that everyone thinks she's a toddler making up her age? Will she ever start to mind being so tiny?
Actually the word is short, not tiny. Jie Jie isn't petite with dainty hands and skinny arms. She even has quite broad shoulders. Bit's are pieces of her are different size ranges, for example, her feet are the size of a 2-3 year old's, her lower legs are size 2-3 but VERY thin, her total leg length fits size 5 leggings, but not pants. Her shirts are size 5 now, with some growing room in the sleeve length, but the body length and shoulders are perfect. She wears size 3-4 skirts and one 6 skort because the waist is tight and it's meant to be worn very short on a taller girl. Dresses are hard, 4-5 but depends on the style and length.
Like all parents, I wonder what the future holds for my child. I wonder if I'm making the best decisions concerning all of her care. Yes, she's happy, and that makes me feel great, but the decisions I make now will affect her entire life now and when she's older, and I definitely don't want to make a grave mistake.