Monday, October 31, 2011

Happy First Halloween

I have a champion trick-o-treater! Jie Jie skipped down the street (just 2 long blocks worth) telling me, "Mama, feet no hurt. More! More! More!"

She's been eagerly awaiting Halloween. There's been a lot of talk amongst the daycare kids about it. I prepared her well, spooky stuff and all, and she was looking forward to it very much. We decorated yesterday and today, all day long, she kept grabbing my hand and kissing it and telling me that she is happy.

I had a party for my daycare. She played all the games enthusiastically.

Today she scraped out her first pumpkin and waited and waited while I carved it with the kitty cat face she desperately wanted.

She trick-o-treated like a pro. I wanted her to stand next to the large air-filled cat as its head turned toward her, but each time it turned, she'd get scared and back away. At the end of the night, we were both thrilled to see a very large xiongmao and he posed for a picture with her.

Yes, we did get over 1000 trick-o-treaters. I ran out of candy by 8:50pm and so did one neighbor. The other neighbor bought 2000 pieces this year and stayed out until about 9:30pm.

One Year Ago, Today...

...I made the biggest decision of my life. This is always going to be a very special date for me. Last year, on Halloween Day, I knew in my heart, without-a-doubt, that Jie Jie was my daughter. I remember praying, as I drove to Costco, for guidance on this. In my heart I already knew, it was just wrapping my head around it. I went into Costco, and without thinking, put the Asian Berenguer doll, now known as Bao Bao, into my cart. I didn't realize at that moment what I was doing, as silly as that sounds. But, a little later when I unloaded that doll from the cart and put it into my car, it struck me that I just bought my daughter her first doll. The decision was made.

After finishing with the trick-o-treaters, I checked my email and found that the SWI had sent me several pictures of Jie Jie taken that day. Much later learned that they were the same pictures that they took to update her file. It was amazing to have decided to adopt this little girl and then to get so many pictures, without asking, on the very same day.

It's very rare to be in contact with the SWI at this time. I didn't realize that it went against normal protocol. I'd originally emailed them after learning that Jie Jie was having surgery and I was curious to know how the surgery went. I was actually advocating to find Jie Jie before realizing she and I were going to be together.

This day, actually almost to the second, last year, was one of the highest of highs I've ever felt. I had made the biggest decision of my life and was super excited to proceed. I stared endlessly at my daughter all day today, these precious remembrances and feelings filling my heart.

Last Minute Mama

LOL! Yes, I'm one of those even though I knew in China last April that Jie Jie was going to be a xiongmao, panda, for Halloween. It's 12:50am and I just finished sewing her costume. I got her up to use the bathroom and she immediately started looking for it without me having to tell her that I finished it. She's thrilled and I'm happily satisfied. How many years did I imagine sewing a costume for my child?

It brought back memories of my own mother sewing my witch costume dress when I was 5 or 6 years old. I loved that dress!

We are ready for the candy. My street gets over 1000 kids before 9pm. I have a tradition with my neighbor from my apartment. She comes over with some candy and joins me for the evening. Tomorrow, she'll hold down the fort alone for a little of the time while I take Jie Jie to a few houses.

Thursday, October 27, 2011

Third Earthquake This Week

It woke me up early this morning. I think it was a 3.6, but the house shook quite a lot. I was told today that most earthquakes around here are usually deep underground, but that these are rather shallow ones and scientists are scrambling to try and figure out what that means.

There was also a 4.7 earthquake about 200 miles north of me last night.

Luckily, I'm too busy to worry about them all the time, but three in a week is getting to be a bit much for comfort.

Wednesday, October 26, 2011

House Soooo Clean....

...I hated to make dinner and get the counters dirty!

Today was house cleaner Take 2 and it went very well. I made sure ahead of time that she wasn't allergic to cats and made sure that she knew that cleaning this house included doing whatever dishes may be in the sink and scooping the cat litter boxes. The whole point of having this kind of help is to have a clean house and have more time for my daughter. What good is a clean kitchen floor and counter tops if I have to spend time washing dishes?

I had the house cleaner come and do a MAJOR clean today. She works with a friend so two women came. It's weird for me to have someone else cleaning my house and while I worked downstairs and heard them working upstairs, a part of me kept wondering if I was doing the right thing. After all, my budget is very tight right now. But...

Then they were done - four hours later! Yes, it took two women four hours to clean my 2 1/2 bedroom, 1 tiny bathroom level. I figured at my best it would have taken me 8 hours, but then I'd have been interupted by my child, pets, phone, errands, work, tiredness, etc...

This major clean was to take care of all the things I just can't get to, like the ceiling fan blades, dusting all the door panels, the windows, which I'm sorry to say still had the dust on them from when I sanded Jie Jie's bookshelf in the kitchen back at the beginning of the year, and then all the daily stuff, like the floors and bathroom.

They charged me less than I thought they would, did a very good job, and the sparkling windows are spectacular. It was a great decision to have had them come and I highly recommend it at least twice a year. I'm going to have them keep coming every couple weeks to "do the rough," if I might borrow that British phrase. I'm looking forward to this weekend. I won't have to do any heavy cleaning and can spend time focused on my daughter. I really wished I'd done this right before going to China like one of my blogger friends did. I just didn't think of it. If you want to know what gift to give, I hope you'll consider pooling with others to give the gift of a house cleaner, at least once. It's a double gift. The recipient gets a clean house and someone gets a job, and that will help our nation's economy.

Parenting A Child With Special Needs

When you were a little girl, did you imagine yourself as a mother? Did you imagine your child as anything but healthy? Did you imagine your child would need a wheelchair, multiple surgeries, or that your child's skin wouldn't stay on their body? I have to throw in that last one because it's EB Awareness Week. Click on Williams Family Blog in my right side menu to learn more!

In the beginning of my adoption journey, which began in early 2006, I was open to a child with a special need. I didn't have anything specific in mind, but I knew I was open to something. When the time came to finally go with an agency, mine wasn't accredited for special needs at that time, but in my homestudy, I still had the statement included that I was open to a child with a special need, though the social worker wrote "mild" in there, too.

Then, I had nearly 4 years to imagine life with my non-special need child, Apple, the one I'm still waiting for. Part of me always accepted that she might have a special need that wasn't diagnosed, but it was a vague notion. Suddenly, a new program opens up in China and 7 months later, I'm home with my beautiful, perfect daughter. Perfect, yes, because we are so perfect for each other. But her body didn't form perfectly and I am now a mother to a child with special needs. NEEDS - plural. I knew that my daughter's need involved more than on part of her. I knew that there was a spectrum and she was at the more severe end. I knew about her little legs. I didn't know about her feet, but the information was there if I'd known where to look, and I'm not surprised, and I wasn't at the time I took off her little shoes and socks in China for the first time. In fact, I remember saying to my friend, "We've got some very unique feet."

What I am facing now, is learning how to parent my little girl with her special needs, along with the fact that she was adopted at the age of 7 years old. I think I come across as a very over-protective mother at first glance, but can finally put into words one of my gravest concerns:

Because I haven't had my daughter very long, because she grew up in a rural Chinese orphanaged and had never been outside of it, she doesn't have the experience or skills needed to filter all the behavorior she sees, or the moral compass to navigate with. If she sees kids having a good time, she wants to join in, regardless of what they are doing, good, bad, dangerous or otherwise. She also doesn't know to ask others for help and she's an easy target for anyone who wants to exploit her.

Don't get me wrong. She is very smart. She behaves very well. But ignorance is ignorance and experience truly matters.

She also doesn't know her own physical limits and I don't either, but we're learning. Honestly, we've applied for a handicap parking placard. My back is messed up from carrying her and the bag of necessities that accompanies us everywhere. We don't need it for the grocery store, but for big church events or museums, etc., where parking is hard and far, we've had some pretty painful times. The last of my blisters is finally healing after carrying Jie Jie down to the lowest of lows of the lower parking lot at our interstake center, a large meetinghouse for several area chapels. The hike down was three weeks ago! We were lucky to hitch a shuttle ride up. Another not-so-secret is that we use the stroller A LOT. Jie Jie is very energetic and plays hard, runs, jumps and all that "normal" stuff, but at play, she can and does stop when she needs to, most of the time. When we're out, we can't always stop and after three days of limping after a small zoo trip covering only half our small zoo, I knew we needed to reevaluate handling Jie Jie's feet.

It's hard to believe looking at my little nugget fully clothed that our van will soon be sporting a handicap placard, but one look at her in shorts paints a different picture. I never imagined it. Do I mind? On one level I mind for my little girl's sake; that her body didn't form in a healthy way. Reality, though, I can't wait! Today my back is screaming and I'm looking forward to our chiropractic appointment this evening. I welcome anything that will assist us where we need it. Anything that will help prevent my daughter from being in pain, and maintain good health is at the top of our list.

I admit to a new fear, a small one, but necessary, that sits at the back of my mind. Since learning about Jie Jie's spinal anomalies, I am more concerned about injuries. If she hurts her neck or her back, she may need radical treatment vs. treatment that a child with a normal spine would have. Same for her ankles and feet. A twisted ankle could mean major surgery.

There are many things like this going through my mind, as I learn how to be a good mother to my daughter and begin to understand the changes I need to make to accommodate her special needs. I am more eager to connect with other mothers like me, especially ones who have older children and have adjusted to this kind of parenthood because they have valuable resources and advice.

Saturday, October 22, 2011

Thursday, October 20, 2011

2 Earthquakes Here Today

We are shaking today! This afternoon we had a 4.0 and tonight a 3.9 along a local fault line. The second one felt stronger to me, but it was because it lasted longer than the first one and I was upstairs in the house.

I was here during The Big One 20 years ago. Honestly, earthquakes do scare me, but there are disasters everywhere, which helps keep things in perspective. Being a mom has made it harder. My fear is that I won't be able to get to my daughter. Tonight I got to her almost before the shaking stopped and she was fast asleep. My cats really go berserk.

There is no theory that I know of as to whether or not several small to moderate earthquakes are going to relieve pressure underground and help prevent a bigger earthquake or if the opposite happens and pressure builds up until there is a big one.

I can only have faith that I'm as prepared as possible and maintain a level head when the earth shakes and the walls around me don't seem very secure after all.

Wednesday, October 19, 2011

This Week In Photos

After church this last Sunday.

I sewed this outfit about 18 year ago and always imagined it on an Asian child.

Last Saturday, we went to my favorite restaurant for the first time and I realized another dream: sharing this dessert with my daughter!

It tasted sooo good!

Ear Plugs & Other News & 1 Regret

Thank you all for your comments lately, especially after the dentist thing. After reading everything and thinking it over, I have decided to look for a new dental practice. What became the determining thought came from a commenter who really hit the nail on the head and put into words what I need: A TEAM. As I coordinate all of Jie Jie's care, I know see that I am assembling a TEAM and we must all work together, no dictators allowed. I'm glad to be able to say that our local pediatrician is proving to be a great team member and she is going to advocate for us to go to the out-of-state hospital, though it's going to really be up to the local pediatric surgeon. I have spoken with him once and my pediatrician confirmed my thoughts, that the surgeon is very reasonable.

Jie Jie's sleep continues to be disrupted from her norm. I think that most of the trauma is past so I really thank the commenter who mentioned that the anasthesia itself could have thrown things off, too, but most likely she's still just hyper-aware right now. Last night I had Jie Jie wear ear plugs to bed and she did sleep 11 hours. I realize this may sound like a dream to most of you, but my daughter ALWAYS sleeps 11-14 hours a night, so 7-9 hour nights were not enough for her and she's been sporting dark circles under her eyes and has been super sensitive emotionally. She asked for the earplugs again tonight and fell asleep tightly clutching my hand. TIGHTLY!

Jie Jie also wanted to be held all evening long and told me so and said how much she likes when I hold her and that she wanted me to hold her for a long time, which I did. She is becoming more and more aware of how her body is different. She is getting upset by it. We were talking about her birth story last night and she asked if her birth "baba" cried when she was born and he saw her special need. It's important that I not read too much into this, but the way she said it gave me great pause. I have seen instances of children who remember details of their birth, and read books on it as part of my doula studies. I wonder if this was a memory.

After this conversation, more details of her orphanage life came out, including a story of a woman who came to take care of her when her tummy hurt. This woman made some kind of drink from something like a twig. Today we happened to go through some videos trying to find a dancing video when I clicked on one of the visit to the SWI and she recognized this woman. I was thrilled to learn about this woman because I felt such an affinity to her when I met her in China. This woman reminds me of my TuTu (grandmother), who did in 2008. There was just something about her that drew me to her. Now I discover she had some knowledge of natural healing methods and gave comfort to my daughter. The drink worked, according to my daughter.

In other news, Jie Jie read the entire alphabet by herself yesterday for the first time!!! She still can't recite it without seeing the letters and she have been able to sign all the letters when she sees them for some time now. She is a very strong visual learner and a weak auditory learner. I'm hoping that as her grasp of the English language gets stronger, so will her auditory learning skills. She still cannot sing an entire song, not a single one, but we are doing fun poems with hand motions, too, which is a big help.

Last Sunday, she stayed up in Sunday School all by herself while I went downstairs. She joined one of the younger kid classes being taught by a mom who is a friend of ours, and they were coloring, one of her favorite things to do. She was so happy to be coloring a picture of Jesus (JeSu - in Chinese) surrounded by children and she asked if I got to color a picture of JeSu in my class, too! My friend said that Jie Jie did perfectly well up to the end when the class was over and some kids left to find their moms and hadn't made my way up the stairs yet, then Jie Jie said, "Mama," twice with a little worry in her voice. Then I was there and all was well.

Now for my one BIG regret: I regret that I ever taught Jie Jie the word "sorry." She over uses it. She apologizes to me for every little thing, whether it's her fault or not. I am trying to break her of this habit. I ask her, "Did it hurt mama? Then there is no sorry." I also tell her, when applicable, that the correct word to say is, "Oops or Uh oh." At first I thought it was a language thing, but she really is afraid she's done something she needs to apologize for.

A word she is over using lately due to not fully grasping the meaning is "cute." Everything is cute, from writing a number 6 for the first time, to the food on her plate. We're working on it and I'm working on myself not to get annoyed at the repetition, but to see the humor in it.

I've arranged our first big girl playdate for this Friday. Two girls (7 & 9) and their mom will come over for pizza and play time in the spa. Jie Jie is desperate for play time with some girls her age even though she's never had any. She is growing up in some ways and needs positive role models.

Sunday, October 16, 2011

Am I Jinxed?

Can you stand to read another medical issue post? I really need to know if most of the people in the medical field are inept, or if I'm just jinxed. I can see how billions of dollars per year are wasted due to idiotic mistakes. Take today's example:

Jie Jie needed to give more samples to see if the Giardia and her UTI are gone. After church, we drove to the hospital and went to the lab. We were the only ones there, so it wasn't busy at all. The man in charge of giving out the specimen containers handed me two, plus a paper cup and some large popsicle sticks, which he touched with his bare hands. I pointed out to him that he just contaminated the sample by touching the sticks. He gave me news ones. Then I asked if he'd given me the right containers for the fecal sample. He said yes, then decided to double-check. Sure enough, he'd given me the wrong one.

I'm not an expert by any means, but the first time we did this, there were two containers, narrow jars filled with fluid that one added the poop to and then mixed by shaking. The instructions were very specific. It made sense to me that since we were testing for same thing that the containers should be the same.

What if I wasn't a person who put two and two together? At the very least, we'd have had to return to the lab to provide another sample in the correct container. At the most, the lab would have run the test, perhaps even the wrong test, and then we'd have had a false result, or, along the way it would have been caught and we'd have to return, but time and money would also have been wasted in the lab.

Should this many mistakes continually be made? Is this the new normal and I'm just not with the program? Do you experience this level of incompetence, too, with your child's medical care? Am I doing something wrong to be a target of this continuing incompetence? Is it like this everywhere or is this Kaiser-specific?

54 Months is 4 1/2 Years

The months and years of waiting are adding up. One day, the counting will stop and my referral will be here. I actually bought a little dress for Apple a week or so ago.

Saturday, October 15, 2011

Preparing for War

When Jie Jie went through her dental procedure, the anasthetic had a side effect that I thought was positive and wanted to know more about it. I had a telephone consulation with the local specialist in this area and we spoke for 55 minutes. In that whole conversation, the specialist was not at all knowledgable or interested in the side effect, but wanted to get my daughter under general anasthesia again so he could examine and "map" her anatomy, where it's different, and run cameras and dye into her. This exam does need to be done, eventually, but I really wanted to know why she reacted as she did to the Propofol, first and foremost.

I couldn't let this rest. I had a terrible niggling feeling that this specialist wasn't competent to handle Jie Jie's special need, that he should have been more interested is why Jie Jie had this side effect. Honestly, I know she looks great in her pictures and she functions very well, but her need is complicated and at the severe end of the spectrum, and it's life-long.

So, I called the children's hospital in another state that is the world leader in this special need and spoke to a nurse specialist. In ten minutes she was able to double check the most probable reason for the side effect, and, explain why it's not a good thing to have happened. Uh oh. That white lightening bolt of fear slashed through my heart, while, at the same time, certain knowledge that local specialist, the one and only in my HMO, definitely isn't qualified to care for my daughter. My hospital doesn't even have the diagnostic equipment to check what needs to be checked. AND, I don't believe any of these doctors even know that they can't check for what needs to be checked because they just haven't dealt with this before. They think they checked already and declared Jie Jie fine, but due to her low muscle mass, the test can come back falsely healthy. Essentially, it might already be too late. Some damage could already have been done and the damage we are talking about is to an organ essential for life, but transplantable, if necessary.

I am calling a conference with Jie Jie pediatrician to get the ball rolling to be sent outside my HMO to the out-of-state hospital and I won't let up until we are there. The local pediatric surgeon I consulted with is very good and I have faith that he'd do great surgery, but it's the rest of the care Jie Jie needs that can't be found locally. This surgeon wants us to stay local simply for the reason that we live here and will need life long support, but I have had more support from this out of state hospital so far, than anything found locally. I should mention that I've been in email and phone contact with the out of state hospital from day one and they've been fabulous.

Please pray that this process will go smoothly for us, that I won't have to "go to war" and expend so much energy fighting for this that is takes away from the time and energy I need to be a good mother. At the same time, please pray for another special family, whose blog is private. They just received the news that their child has a special need quite different from what they thought and the prognosis is terminal. I'm having a hard time wrapping my heart and head around that and can only imagine what this family, especially this child's mother, is going through at this time. All the while, I am also giving thanks for the divine miracle given to another family whose daughter was also given a diagnosis that was terminal and now, a healing miracle occurred that has given this family hope that their daughter will be eligible for a heart transplant that will save her life.

Parents of children with special needs are in such a marvelously indescribable place, so near to God, often, because all that is occurring with our children is in His hands and without our faith in Christ, I don't know how we'd get through it. We have a front row seat to modern day miracles that are astounding even the most highly trained specialists in the most prestigous medical establishments and a front row seat to the miracles that occur in our own homes and hearts on an almost daily basis.

Thursday, October 13, 2011

Good Times

My fencing club's annual beach picnic.
I dug a tunnel and the next thing I know, Jie Jie buried herself in it!

Fun in our new spa. The water is now perfectly clear.
The therapy is working well, the right muscles are getting worked on and we're getting into a routine with it. I'm so glad I bought it. You can see how deep it is for Jie Jie in the second photo where she is standing in the middle.

Sunset over the Pacific, the evening of our picnic.

These are size 4/5, T*rget brand. Jie Jie likes these a lot, but couldn't figure out why I was making the feet long for this picture.

Post Traumatic Stress

It's been a week now since Jie Jie's dental experience and she is still not back to her normal sleeping pattern. So far, after having any type of medical exam, she cannot fall asleep the same night or for several nights, but this is her longest stretch so far.

She usually falls asleep in about 30 seconds after getting into bed and sleeps 11-14 hours a night straight through. If I wake her up to use the toilet, she falls right back to sleep.

The night she had her dental work done, she tried very hard to fall asleep but every time she was almost there, her eyes would open wide. If I asked her what was going on, she'd start to cry and say, "Sleepy medicine, doctor coming." That first night, after many hours of lying with her to no avail, I let her watch her Chinese cartoon video for an hour then we both went to bed, in the wee hours.

The next few nights, after she would finally fall alseep, I'd not awaken her to use toilet, but then she had an accident so I started to do so again. If she managed to fall asleep without too much trouble, she definitely couldn't fall back to sleep after going to the bathroom and we were back to the prolonged wakefullness.

Tonight she is very, very tired and it's 11pm and she's still up. She fell into a light sleep an hour ago but awakened when I checked on her so I had her use the bathroom and now she's back in bed, eyes wide open.

She said she doesn't know why she can't fall asleep. I don't know if it's a physical memory of being put under anasthesia or an emotional memory or both, but she's definitely struggling with it.

Monday, October 10, 2011

We Just Called Jie Jie's SWI

Tonight Jie Jie decided it was time to call her PoPo, her caregiver, so we did. It was really on a whim, but we got through easily and they were all very excited to speak to her. Unfortunately, Jie Jie couldn't remember how to speak in her native dialect, though I could tell it was just below the surface, and I could only mutter a phrase or two in Mandarin. I really don't think it mattered. I think that they were so happy to hear from her, that it was worth it.

I Can't Sleep Tonight

I fell more in love with my daughter over the last four days.

I held her when she suffered pain and she clung to me, pitiously crying.

I carried her on my back until I ached.

I stayed up holding her and lying next to her into the wee hours of the night on the night her dental work was done because each time she closed her eyes and tried to fall asleep, she remembered the "sleepy medicine" and "doctor coming." We talked about being safe in our house, that only mama was here and no doctors, but she was remembering more than just the dentist, I think. We finally got up and watched Yon Yon, her Chinese goat cartoon.

I fed her off my tiniest baby spoon because she couldn't open her mouth for anything larger. I felt like Mother of the Year when I made chicken congee and she tasted it and declared that it was called "Ju Ah" and she gobbled it up. I can't describe the feeling of joy I had that I was able to make one of her comfort foods from China, just like her caregiver made.

She showered me with kisses, gently so her lips didn't hurt, each time I did something that made her happy, like let her swim in the spa, play with her new play doh set, or take a stroll in the carriage after sunset with her doll Bao Bao nestled in beside her.

We stood in line after a violin concert for over an hour, past 10pm, so she could have her picture taken with the virtuoso. It wasn't the music as much as the dress that enthralled her. I thought for sure Jie Jie would tire and give up, but she didn't.

Jenny Oaks Baker, virtuoso violist,
just released a new album featuring Disney music.

I do more than stare at her when she sleeps. I pull the covers up, place my hand on her shoulder, caress her little cheek, stroke her hair, move her into a better position on her pillow...

How I love my child!

A Child With Special Needs - To Parents

This is a post that isn't coming out quite right even though it seemed perfect in my head.

I think I'll start and stop with this until I can sort it all out:

We are special parents!

Sunday, October 9, 2011

After the Dentist

This was my little darling at the dentist's office when we first arrived. She was very relaxed and happy and so was I. What I am about to tell you is without embellishment. The reason I'm going to give you all the details is so that you will always be ready to advocate for your child and protect your child and yourself, your rights as a mother, when you least expect you have to. Please keep all comments positive and respectful. The last thing I want to read is that I should "trust the professionals."

The night before my daughter's appointment, the anesthesiologist called me to go over the sedation procedure. The drugs were going to be given as follows: Versed, nitrous oxide, insert IV, Propofol. I told him that I was not willing to give my daughter the Versed or nitrous oxide unless she needed it, as long as he used a local numbing spray before inserting the IV and as long as her veins looked good for insertion, meaning that he wouldn't have to dig around under the skin for a vein. After some conversation, we agreed that we could probably skip one of the premed drugs, but he was willing to meet my daughter and look at her veins before deciding. I was happy with this.

I am a person who believes that you do not put any drugs into a body unless there is a need to do so. Many of the drugs routinely used on children have not been tested on them. We do not know the long-term effects of most of these drugs. Many drugs, including Versed and nitrous oxide, do not often work as the doctors would like to make you think they do. Versed is supposed to make children not remember, but many, a whole lot, in fact, do. Nitrous oxide can cause panic attacks.

Promptly after arriving in the waiting area, the dentist appeared. He is a large man, tall and completely bald; a very imposing figure. He immediately began a militant tirade in a raised voice, looming over me, of how he is in charge and his word is the final say, over the anesthesiologist, and my daughter will receive exactly what he said she will and that I have no choice at all in this and that he will not change what he does and if I do not accept this I can go elsewhere. He ended with the order to, "Think about it," then left.

I cannot remember if, during this tirade I got one word in, or if he came back to have another go at me, but I did tell him that I had already made an agreement with the anasthesiologist, after which he announced he was in charge and no one else had any say in the matter. I also told him that my daughter was not the same frightened child he met four months ago, that we'd been through more medical stuff and she now trusted me and knew enough English that she was well-prepared. I mentioned that children raised in orphanages often lived with high cortisole levels, a stress hormone, that made them react differently to Versed, namely, that it didn't work well on many of them. I also told him that any decisions concerning my daughter are not his; they are mine, as her mother. He ranted further at me, glared, etc....

Some time between the first and second tirade, I prayed that I would know if my daughter should have the premed and agree with the dentist or if the dentist will realize that my daughter didn't need the premed and would relinquish his demand.

Through all of this, I was calm. I looked him straight in the eye. I never raised my voice. I stuck to facts. I was so strong! I also was given the insight to recognize this as a tactic. I could clearly see his side. He must have to deal with hysterical, know-it-all, bossy, scared, nutty parents and their children all the time. I even said so to him. He was a master at intimidation and getting these parents "into line." I felt sorry for him, but I was appalled that he'd resorted to this, especially with me. It was terribly unprofessional and I've had it up to the top of my head with unprofessionalism!

Finally, he said from down the hallway, "I don't want to stand in the way of your child's care."

I asked, "Does this mean you will send Dr. M in now?"

He replied, "Yes."

Enter Dr. M, the anasthesiologist. Nice man. Also large and imposing, but relaxed, personable. I asked what the problem with the dentist was and he said that that dentist was just used to doing things a certain way. I said, "I thought we had an agreement..." He said we still did and that we'd bring my daughter into the room and get started and see what happens. I said, "Just pull up her sleeves now and look at her veins. If they look good, let's get the show on the road. If not, we'll follow your usual protocol, starting out here, as usual."

He did as I said, found a good vein. We went into the room and my daughter was amazing. She tried to see what was going on, then I told her I'd tell her when the poke was coming. She was curious, nervous, but doing very well. I told her to look at my eyes and I sang to her. She didn't feel the needle go in, thanks to a topical spray and in seconds, she was unconscious.

I read a book in the waiting room. I was calm. The procedure took just over one hour and I had two updates during that time. Things were going well, slightly better than expected, in fact. Afterward, the dentist came in to tell me that he was done, things were fine, that her lips would be swollen and she'd have tape marks on her eyes and nose. He also told me that he gave her Novacaine to help with the pain afterward. He never mentioned this ahead of time. I would have liked to have been able to prepared Jie Jie for this sensation ahead of time. A little while later, the anasthesiologist carried my daughter in to me and I held her as she fully regained consciousness.

I am not ignorant of how surgical patients look after their procedures. I have seen surgeries and have seen how rough certain procedures are because they have to be and how rough they are because of careless doctors. My daughter looked like she'd been beaten. They stretched her mouth open so far that it tore in the corners on both sides. She did go into it having chapped lips, but now they were completely cracked open all the way across both lips. They continued to bleed for two days when she smiled or cried. She still has scabs in the corners.

The dentist acted very matter-of-fact. He did not apologize for or in any way acknowledge his previous behavior. He did not in any way acknowledge that my daughter did a good job and was brave and had come such a long way since the last time he met her. However, all the staff did say what a trouper she was. As I sat there with my little nugget fussing and coming into full consciousness, I heard an 11 year old down the hall getting hysterical over the Versed they were about to squirt into her nostril and listened as she screamed and yelled as she was given nitrous oxide. The comparison was clear. My daughter was amazing!

My friend who accompanied me to China and is a dental hygienist and wife of a dentist said I should write this dentist a letter. Another friend said her kids were with the practice and they left it because they didn't like it. Today, another friend said he'd noticed the dentist getting "grouchy with age."

I don't feel the need to send a letter. I said all I needed to to this man's face. I got what the anasthesiologist and I agreed on for my daughter. I am very unhappy about her over-stretched mouth. She also had skin ripped off with the tape when the IV was removed. I use medical tape on my daughter every day, pertaining to her special need, and another medical grade adhesive as well, and only once in 6 months did I take any skin off and it wasn't from lack of gentleness, but having to remove the adhesive before it's time due to failure of part of it.

I already know that if I stick with the practice, I'll change to a different dentist, but I'm not sure I want to stick with this practice. Again, I truly can see the dentist's perspective so it's less about his tirade and more about the unnecessary roughness with my child's mouth and the tape. Why add to the pain she was already going to be in. Honestly, her lips were more sore than her teeth! I would love to know your opinions based on your own experiences with your child's dentist.

I am posting the following pictures so you can see what is normal after anasthesia, a crying child, still a bit out-of-it, and so that you can see her lips.

All done, going home. Trying to smile.

Smiling hurt too much.

Cozy and safe at home watching Big Bird in China for the first time.

The next evening, Friday.

Saturday evening.
Tape residue still on her forehead and cheek.

Wednesday, October 5, 2011

Big Day Tomorrow

Tomorrow morning, Jie Jie will be going under general anethesia in the dentist's office to have her teeth fixed. She will have something done to all but 4 of the teeth in her mouth, including extractions, crowns, spacers and fillings and more.

In my religion, men who hold the holy priesthood can give people special blessings and I had Jie Jie blessed tonight. Essentially, she was blessed with strength to handle the procedures, to heal well and to finanlly be free of painand for the doctors to have skill. I also asked for and received a blessing that I would feel calm and confindent and be able to assemble all the best medical specialist and other team members that is possible, throughout all that Jie Jie will need.

Please remember us in your prayers. While under anesthesia, the doctor will intubate my daughter and then "bag" her, which means manually squeeze a bag attached to the tube he will place in her windpipe to breathe for her. This is the part that I'm most nervous about. While she will be monitored as carefully as if she was in a hospital, she is not in a hospital, so the medical back-up, in case of an emergency, is an ambulance ride away and the nearest hospital doesn't have a pediatric unit at all. However, I was told that in all the years this dentist and pediatric anesthesiologist have been doing this, nothing has ever gone wrong.

There is also the psychological effect to consider for Jie Jie. She has been doing very well, but I cannot know for sure if she will have any post traumatic memories come up. Tonight she told me that, while in China for her last surgery, they made her swallow white, round pills. The information I received said she didn't have a fever, but when I asked her what they were for, she touched her skin and said, "hot, cold." She said that the pills hurt her throat and they gave her a lot of water and that she cried. This all came out after I explained to her that I had medicine for her if she had pain afterward. She asked if the medicine was "smooshie," which I think was her way of asking if it was liquid. Then she told me all about the pills she had in China.