Let me lead by sharing the good news - Geri's surgery was a rousing success! Dr. B said before the operation that he didn't think he'd be able to find her natural drainage in the right eye, because with all the swelling and distortion the eye's anatomy gets messed up and the microscopic structures are nearly lost. Well, he found and cleared about 75% of it! In today's post-op he was startled to find that she could definitely see him from that same right eye. He moved towards her and when she tried to get away from him he started back and said "She can see me!"
Which is what I told him at the pre-op. Tonight, reflecting on our experiences so far, Nick and I have come to the realization that no one believes anything we tell them about our daughter. They are not used to a child in her situation, and they don't really hear us.
Before the surgery, we explained in detail to the pre-op nurses that we needed to be there with our daughter as she awoke from the anesthesia. "Oh sure, as soon as she starts moving someone will come and get you. No problem," they told us. The message apparently didn't get through to the post-op nurses, though, because they didn't come and get us until she had fully roused and tried to rip the bandages off her face and her arms had been boarded. By the time I finally got to her, she was beyond terrified.
"Oh, kids always get scared coming out of anesthesia," the nurse tells me with a sympathetic smile. We couldn't make them understand that this isn't the kids you "always" see. The kids you always see have at least one loving person in their lives and are confident that, if they are in need, someone will come. My daughter knew nothing but neglect and possibly abuse before six weeks ago. The kids you always see are familiar with the English language. My daughter has no clue what you are saying to her. Most kids can talk to you, tell you how they feel, express their pain or fear. My daughter never learned to speak and has only recently started crying at all when scared or hurt. The only familiar thing she has at all is us. You have no idea how much of a life preserver we are for her. She is just starting to understand that, if mom or dad are there, we will take care of her. If we are not present, she has no idea what to expect. Oh, you're a nurse? Yeah, so were the ladies at the orphanage who rendered her utterly terrified of bathing and of having her shirt removed. The title "nurse" means something entirely less Florence Nightingale for her than for another kid.
Similarly, Dr. B (who is a fantastic doctor, I don't mean any of this disparagingly) heard us telling him that she could see and seemed to think we were nuts or imaginative. It didn't jive with what he was seeing in his office - a child who was almost entirely non-responsive to all the toys and flashing lights. We couldn't seem to make him understand that the child he sees in his office is not the child we see at home. Our daughter shuts down in new or different places. She's been going to church with us for 5 weeks now and no one has heard her speak at church. They have never seen her walk. She will not even attempt to vocalize, walk, or eat in an unfamiliar or scary place. She has eaten in a restaurant only a few times, and almost all of those times were in our favorite pizza joint where they know us and we treat it like our own house. The other time was in a nearly empty McDonald's play area. In short, when you start trying to prod her and shine lights in her eyes, she shuts down. She becomes almost entirely unresponsive. Oh and by the time you came in to start looking her over, your nurse has already come in and pissed her off and put her in shut-down mode.
All this makes me think two things. First, it makes me so grateful for her pediatrician, who has 14 years of experience working with internationally adopted kids. If you are adopting, do yourself a favor and find a primary care physician for your child who has seen other adopted kids. You won't realize it until a little down the road, but it's the only way for your child to get comprehensive and complete care.
The other thing is that perhaps medical professionals working in pediatrics should be getting some sort of training in this area. Even if it's just a brief seminar to help them understand what they're dealing with. Why it isn't totally bizarre for the parents to have almost no medical history. Why you should expect this kid to have major emotional meltdowns at things that other kids could easily handle. Why this kid might act way younger than their chronological age. A general understanding of the situation from which this kid is likely coming. Why you need to move slower, watch for nonverbal cues, and keep this child with their parents even more vigilantly than with the other children.
If nothing else, they need to listen to the parents and take their input very seriously. No, I'm not a hover-parent, being overprotective. No, my requests are not silly anxiety. No, I'm not exaggerating.
My kid is not the kid next door.
Thursday, December 29, 2011
Tuesday, December 27, 2011
Pre-Op... AAACK!!!
AAACK because of the Murphy's Law misadventure that was the appointment. Sigh. This was a trying morning!
We were fortunate to have a dear dear dear friend from church offer to watch our other kiddos while all of this medical mayhem is going on, and today we took her up on it. She arrived early, with her two kids in tow, so I was able to head out with Geri right on time (rather early, actually) without a shred of worry. That was really nice. So I loaded Geri in the car and headed off to Denver for the appointment. I gave myself about 2 hours of travel time, just in case of traffic. On the way up, I stopped off at a Starbucks for some grub and coffee. All things were going great.
Until I totally got confused. See, this surgeon is part of a rather large practice, and they have 7 locations. Yes, 7, all in Denver. And the docs move between different locations! So this week we have three appointments with one doctor... at three different locations. Today was the Englewood location, tomorrow is at Children's Hospital, and Thursday's post-op is at the Wheat Ridge office. Oh, but everyone calls the Englewood office "the Centennial office" when they talk to you. Even though it's referred to as Englewood in their literature. Confused yet? Because I sure was! I made the drive up to the Wheat Ridge office, rolling in 15 minutes ahead of our appointment time and feeling like a success.
Then they told me that I was in the wrong office. The right office was about 20 minutes south. You know, south? That direction I came from? sigh So I threw Geri back in the car while the Wheat Ridge office called the office-formerly-known-as-Centennial, and raced back in the direction from whence I came. I got there at 1030, thinking that I wasn't massively late so it should be ok. Then I opened the door to get Geri out of the car to find that she had vomited all over herself. Did I mentioned she got carsick that one time in Bulgaria? I must have been driving like a Bulgarian today, because she blew chunks huge. I picked up the larger, more solid bits and wiped her off a little with diaper wipes and raced into the office.
Once in the office I had to fill out the new patient paperwork, which is really easy when you're toting a non-verbal toddler covered in puke. I finally got all the paperwork together and picked her up and that was when her diaper leaked. All over the right side of my shirt. Luckily, I had a change of pants for her. No such luck for me. Oh well, I managed to get her changed and cleaned up, even got her jacket largely cleaned of vomit, and then went back to the waiting room where a well-meaning mom sitting across from me did a really bad job of not staring at my daughter. Or maybe it was me. I don't know, which would you stare at - the manically rocking girl who was way too big to be a lap-bound child or the wild-eyed mother with the purple hair and the hundred yard stare?
We were finally called back, where the nurse attempted a few minor tests before giving up and leaving the room. Then we waited. A lot. Our 10:15 appointment became an 11:45. For the record, I don't blame the doctor's office for this. I was late, I know that means I had to be squeezed in somewhere else and made it impossible for them to honor my appointment time. Geri decided to carpe that waiting time and partially fall asleep in my lap, which was at once encouraging and a bit annoying because of course she decides to finally submit to a nap when there's no way I can oblige. Kids.
The actual appointment was very informative. Her doctor told me that he wasn't going to worry about getting a bunch of examination stuff done in the office today because he would be examining her eyes under anesthesia tomorrow. Fine by me. He explained that the surgery he intends to perform involves opening the eye to get at the natural drains that should be in place but with a membrane blocking them. The biggest difficulty is going to be the fact that he eyes are so swollen. The swelling changes the anatomy of the eye, moving the drains out of position and flattening them to slits and making them very hard to find. If he can find the drains he can remove the blockage, but if he can't then he has to install synthetic drains. They work fine, but the problem with them is that they only last about 4 years... meaning she'd have to have an operation every few years to replace them.
He told me that he believes her right eye still has sight but her left eye does not. He wants to operate fully on her right eye. On the left eye, he wants to use a laser to blast and partially kill the portion of her eye that produces fluid. He said that, since he doesn't think there's vision to be saved in that eye, he isn't sure he wants to operate on the eye right off. For the record, his goals for each of her eyes are very different. In her right eye, he wants to reduce her pressure to the normal range, getting it below 21. In her left eye he wants to get it below 30. Why 30? Here's an interesting tidbit about glaucoma that you won't find on WebMD... if the pressure of the eye stays over 30 for too long (not sure of the actual time frame) the eye will actually die and shrivel up and rot in the socket. So if he doesn't get it below 30 on the left side, she'd lose the eye entirely.
I disagree with him, though, on one fine point... I don't think that left eye is a total dud. I guess she could be so used to relying on her right eye that the compensation is hard to detect, but I tried to test her today. I held my hand way off to the left side and wiggled my fingers. She saw it, turning her head to get a good look with her right eye. She definitely relies on the right eye, but I think the left one works at some level. He will be able to tell tomorrow when he examines her under anesthesia, because he'll be able to look at her optic nerve and see how much damage it has sustained. He did say that if any of that nerve still looks healthy, he'll probably do the surgery on the left side as well as the right. I think I would like him to do it anyway, because I think that just slowing the production of fluid isn't going to be enough. But he went through med school, so I feel like I should listen to him. This is one of the hardest parts of parenting - knowing when to argue with the doctor on your child's behalf. Do I trust my gut or his training? Do I want to be that pain-in-the-butt mom who presumes to know more than the professionals? Do I want to be the mom filled with regret later if his more cautious approach doesn't work and I am left wondering if we would have seen results had we gone all the way?
At any rate, we are on for tomorrow and I think we have all the info we need at this point. We'll get more details tomorrow, before the surgery. He did make a point of telling me that she will be on drops to maintain her eye pressure for life. And that she will probably need repeat surgeries in the future and very frequent eye exams. He said that, with this condition, your ophthalmologist's office becomes a second home.
Well, if you can find it.
In other news, she astounded me today by cruising a very long distance on the furniture. And not a straight shot, either. She started at the bookshelf on the far side of our bed, then went across my hubby's nightstand, up the side of the bed, across the end, transferred to her bed, down the side of her bed to the door, out the door into the kitchen and turned a left to make her way along the counters to the bathroom door, which transferred her to the toilet and from there to her objective - the sink! I watched the whole thing with the biggest grin on my face and called Nick to tell him as if she had just proven string theory or something. And tonight she took another bath without any problems. That's two nights in a row! And this time we put her in the tub with it partially filled and the only time she cried was when we took her out! Go figure. She used to scream when we put her in it, now she's going to throw her fit when we take her out. Kids.
I'm going to wrap this very long entry up by asking everyone to please pray like crazy. Pray that we get there on time and without all hades breaking loose on the way. Pray for her safety under the anesthesia. Pray that the doctor will find the natural drains in her eyes and be able to open them. Pray that her optic nerves will still be at least partially intact in both eyes. Pray that her doctor will make the best decisions in her surgery, and that we will make the best decisions in advocating for her. Pray that her corneas heal and have no permanent clouding. Pray for God's will to be done in our daughter's life. Pray for a healing miracle. Pray that this ordeal doesn't set her back too much in her bonding and adjusting. Pray that I'm able to handle the two weeks of recovery with two very needy girls, one in a lot of pain and the other too young to understand it all. Pray for TJ to be patient during all of this.
Jesus opened the eyes of the blind before. Pray He will do it again for our daughter.
We were fortunate to have a dear dear dear friend from church offer to watch our other kiddos while all of this medical mayhem is going on, and today we took her up on it. She arrived early, with her two kids in tow, so I was able to head out with Geri right on time (rather early, actually) without a shred of worry. That was really nice. So I loaded Geri in the car and headed off to Denver for the appointment. I gave myself about 2 hours of travel time, just in case of traffic. On the way up, I stopped off at a Starbucks for some grub and coffee. All things were going great.
Until I totally got confused. See, this surgeon is part of a rather large practice, and they have 7 locations. Yes, 7, all in Denver. And the docs move between different locations! So this week we have three appointments with one doctor... at three different locations. Today was the Englewood location, tomorrow is at Children's Hospital, and Thursday's post-op is at the Wheat Ridge office. Oh, but everyone calls the Englewood office "the Centennial office" when they talk to you. Even though it's referred to as Englewood in their literature. Confused yet? Because I sure was! I made the drive up to the Wheat Ridge office, rolling in 15 minutes ahead of our appointment time and feeling like a success.
Then they told me that I was in the wrong office. The right office was about 20 minutes south. You know, south? That direction I came from? sigh So I threw Geri back in the car while the Wheat Ridge office called the office-formerly-known-as-Centennial, and raced back in the direction from whence I came. I got there at 1030, thinking that I wasn't massively late so it should be ok. Then I opened the door to get Geri out of the car to find that she had vomited all over herself. Did I mentioned she got carsick that one time in Bulgaria? I must have been driving like a Bulgarian today, because she blew chunks huge. I picked up the larger, more solid bits and wiped her off a little with diaper wipes and raced into the office.
Once in the office I had to fill out the new patient paperwork, which is really easy when you're toting a non-verbal toddler covered in puke. I finally got all the paperwork together and picked her up and that was when her diaper leaked. All over the right side of my shirt. Luckily, I had a change of pants for her. No such luck for me. Oh well, I managed to get her changed and cleaned up, even got her jacket largely cleaned of vomit, and then went back to the waiting room where a well-meaning mom sitting across from me did a really bad job of not staring at my daughter. Or maybe it was me. I don't know, which would you stare at - the manically rocking girl who was way too big to be a lap-bound child or the wild-eyed mother with the purple hair and the hundred yard stare?
We were finally called back, where the nurse attempted a few minor tests before giving up and leaving the room. Then we waited. A lot. Our 10:15 appointment became an 11:45. For the record, I don't blame the doctor's office for this. I was late, I know that means I had to be squeezed in somewhere else and made it impossible for them to honor my appointment time. Geri decided to carpe that waiting time and partially fall asleep in my lap, which was at once encouraging and a bit annoying because of course she decides to finally submit to a nap when there's no way I can oblige. Kids.
The actual appointment was very informative. Her doctor told me that he wasn't going to worry about getting a bunch of examination stuff done in the office today because he would be examining her eyes under anesthesia tomorrow. Fine by me. He explained that the surgery he intends to perform involves opening the eye to get at the natural drains that should be in place but with a membrane blocking them. The biggest difficulty is going to be the fact that he eyes are so swollen. The swelling changes the anatomy of the eye, moving the drains out of position and flattening them to slits and making them very hard to find. If he can find the drains he can remove the blockage, but if he can't then he has to install synthetic drains. They work fine, but the problem with them is that they only last about 4 years... meaning she'd have to have an operation every few years to replace them.
He told me that he believes her right eye still has sight but her left eye does not. He wants to operate fully on her right eye. On the left eye, he wants to use a laser to blast and partially kill the portion of her eye that produces fluid. He said that, since he doesn't think there's vision to be saved in that eye, he isn't sure he wants to operate on the eye right off. For the record, his goals for each of her eyes are very different. In her right eye, he wants to reduce her pressure to the normal range, getting it below 21. In her left eye he wants to get it below 30. Why 30? Here's an interesting tidbit about glaucoma that you won't find on WebMD... if the pressure of the eye stays over 30 for too long (not sure of the actual time frame) the eye will actually die and shrivel up and rot in the socket. So if he doesn't get it below 30 on the left side, she'd lose the eye entirely.
I disagree with him, though, on one fine point... I don't think that left eye is a total dud. I guess she could be so used to relying on her right eye that the compensation is hard to detect, but I tried to test her today. I held my hand way off to the left side and wiggled my fingers. She saw it, turning her head to get a good look with her right eye. She definitely relies on the right eye, but I think the left one works at some level. He will be able to tell tomorrow when he examines her under anesthesia, because he'll be able to look at her optic nerve and see how much damage it has sustained. He did say that if any of that nerve still looks healthy, he'll probably do the surgery on the left side as well as the right. I think I would like him to do it anyway, because I think that just slowing the production of fluid isn't going to be enough. But he went through med school, so I feel like I should listen to him. This is one of the hardest parts of parenting - knowing when to argue with the doctor on your child's behalf. Do I trust my gut or his training? Do I want to be that pain-in-the-butt mom who presumes to know more than the professionals? Do I want to be the mom filled with regret later if his more cautious approach doesn't work and I am left wondering if we would have seen results had we gone all the way?
At any rate, we are on for tomorrow and I think we have all the info we need at this point. We'll get more details tomorrow, before the surgery. He did make a point of telling me that she will be on drops to maintain her eye pressure for life. And that she will probably need repeat surgeries in the future and very frequent eye exams. He said that, with this condition, your ophthalmologist's office becomes a second home.
Well, if you can find it.
In other news, she astounded me today by cruising a very long distance on the furniture. And not a straight shot, either. She started at the bookshelf on the far side of our bed, then went across my hubby's nightstand, up the side of the bed, across the end, transferred to her bed, down the side of her bed to the door, out the door into the kitchen and turned a left to make her way along the counters to the bathroom door, which transferred her to the toilet and from there to her objective - the sink! I watched the whole thing with the biggest grin on my face and called Nick to tell him as if she had just proven string theory or something. And tonight she took another bath without any problems. That's two nights in a row! And this time we put her in the tub with it partially filled and the only time she cried was when we took her out! Go figure. She used to scream when we put her in it, now she's going to throw her fit when we take her out. Kids.
I'm going to wrap this very long entry up by asking everyone to please pray like crazy. Pray that we get there on time and without all hades breaking loose on the way. Pray for her safety under the anesthesia. Pray that the doctor will find the natural drains in her eyes and be able to open them. Pray that her optic nerves will still be at least partially intact in both eyes. Pray that her doctor will make the best decisions in her surgery, and that we will make the best decisions in advocating for her. Pray that her corneas heal and have no permanent clouding. Pray for God's will to be done in our daughter's life. Pray for a healing miracle. Pray that this ordeal doesn't set her back too much in her bonding and adjusting. Pray that I'm able to handle the two weeks of recovery with two very needy girls, one in a lot of pain and the other too young to understand it all. Pray for TJ to be patient during all of this.
Jesus opened the eyes of the blind before. Pray He will do it again for our daughter.
Monday, December 26, 2011
Merry Christmas?
It's tempting, as a parent, to hear some piece of wisdom about kids and say "yeah, but not MY kid." When I read and was told that, for adopted kids, the holidays are very difficult, I mistakenly thought Geri would be immune. I think I figured that, since she is so delayed in her development, she would be too infantile to be affected. Or perhaps I thought that we were keeping things pretty low key, so why would she have trouble?
sigh. another lesson learned.
My definition of a low-key Christmas is not my daughter's. I failed to factor in the days leading up to it, honestly, and the relatively new concept of gifts in her mind.
On Friday we got up very early to get Big Brother from the airport. He had traveled to visit his bio-dad's family and was returning in time for Christmas. This meant rousing the girls to drive up to Denver at o'dark-thirty. We figured, although why we thought this I'll never understand, that Geri would sleep in the car on the ride up so it would be moot. In the car at 5:30 in her PJ's, she would sleep until we got there and wake at a near-normal 7:30 and then eat some oatmeal at McDonald's before a ride home and a nap at the normal time. Wow, that is so naive in print... What really happened is that she woke up at 5:30, refused to sleep in the car, refused to eat at McDonald's, and returned home cranky and agitated and unable to eat or sleep. The upset of that day would lead to poor sleep that night, followed by no nap the next day, followed by poor sleep the next night... you get the picture. By the time we were going to Christmas Eve service, she was unhappy with us and we were about ready to keel over from exhaustion. When Christmas morning rolled around, everyone was out of sorts.
Then, cue the insanity. She was NOT ready for what unfolds on a typical Christmas morning. All of the chaos of presents being torn into, paper flying, new toys squawking and singing and lighting up all around... it was more than she could handle. She was only able to open about three presents that morning, the rest happened slowly over the course of the day. In the brief periods of happiness in between tantrums.
It was not the picture of the ideal Christmas day, but I'm learning to let go of ideal things. There were some definite moments of happiness. And really, what is life about but to hold onto the moments of happiness that God grants us and let go of the rest?
By the by, my husband gave me the best present possible. A 2 hour nap, totally uninterrupted, in the guest room downstairs. What did I give him? Today I gave him a similar break, out on the porch with his pipe. :) It's the little things.
sigh. another lesson learned.
My definition of a low-key Christmas is not my daughter's. I failed to factor in the days leading up to it, honestly, and the relatively new concept of gifts in her mind.
On Friday we got up very early to get Big Brother from the airport. He had traveled to visit his bio-dad's family and was returning in time for Christmas. This meant rousing the girls to drive up to Denver at o'dark-thirty. We figured, although why we thought this I'll never understand, that Geri would sleep in the car on the ride up so it would be moot. In the car at 5:30 in her PJ's, she would sleep until we got there and wake at a near-normal 7:30 and then eat some oatmeal at McDonald's before a ride home and a nap at the normal time. Wow, that is so naive in print... What really happened is that she woke up at 5:30, refused to sleep in the car, refused to eat at McDonald's, and returned home cranky and agitated and unable to eat or sleep. The upset of that day would lead to poor sleep that night, followed by no nap the next day, followed by poor sleep the next night... you get the picture. By the time we were going to Christmas Eve service, she was unhappy with us and we were about ready to keel over from exhaustion. When Christmas morning rolled around, everyone was out of sorts.
Then, cue the insanity. She was NOT ready for what unfolds on a typical Christmas morning. All of the chaos of presents being torn into, paper flying, new toys squawking and singing and lighting up all around... it was more than she could handle. She was only able to open about three presents that morning, the rest happened slowly over the course of the day. In the brief periods of happiness in between tantrums.
It was not the picture of the ideal Christmas day, but I'm learning to let go of ideal things. There were some definite moments of happiness. And really, what is life about but to hold onto the moments of happiness that God grants us and let go of the rest?
By the by, my husband gave me the best present possible. A 2 hour nap, totally uninterrupted, in the guest room downstairs. What did I give him? Today I gave him a similar break, out on the porch with his pipe. :) It's the little things.
Friday, December 23, 2011
Miracles Behind, Miracles Ahead...
This week, on Thursday, we took Geri to the appointment about which we have been most excited - the ophthalmologist.
In short, we knew when we adopted our daughter that she has congenital glaucoma, meaning that she had been born with improper drainage of the fluid in her eye leading to increased eye pressure. This increased pressure causes blindness by damaging the retina and optic nerve, the degree of the damage being related to the amount of blockage and how long it is left untreated. When we brought her home, we knew that she could see lights and outlines, high contrast and bright light being easiest for her.
The ophtho was amazed at what she found. Normal eye pressures are in the 10-20 range. At 30, the doctors are alarmed. Hers was almost 60 in each eye! (The dr. compared it to having a blood pressure of 400/240.) Congenital glaucoma is always treated with surgery in the US, typically performed by 6 months of age. Geri was diagnosed at 6 months, received no treatment at all until 3 years, and then was given eye drops. Drops which the doc said are the least effective ones they could possibly prescribe. The pressure of her eyes has caused them to swell, stretching the cornea and causing clouding due to the tissue being essentially pulled to the breaking point.
The first words out of the the doc's mouth was "Has she been evaluated at the School for the Deaf and Blind?" She assumed, just looking at our daughter, that she was entirely blind.
She was shocked to find that she is most certainly not. She repeatedly said that Geri should NOT be able to see as much as she can. She was amazed to see our daughter track objects, reach for them, and follow light with her eyes. She was so amazed that she actually called a med student in from home to see our daughter because she said he would never see anything like this again. She examined Geri's retinas to see how many blood vessels are still intact. Over time, the pressure kills off the blood vessels and the loss of those vessels causes a corresponding loss of vision. She expected to find around 20-50% of the vessels still intact.
They were completely intact. Near as she could tell, and our daughter was not cooperating so there is a margin of error here, there was almost no loss of blood vessels in her eyes. There was evidence of damage to the optic nerve, but that doesn't relate as directly to loss of vision as the condition of the retina.
There is still a chance of regaining some of her vision. The doc said that, in her opinion, it's possible. It shouldn't be, but it is.
Next Tuesday we will take her to Denver to meet the surgeon and get his opinion. The surgery will happen regardless of whether he predicts any potential gains in vision, but it will be interesting to hear what he thinks. If nothing else, reducing her pressure will make her more comfortable. On Wednesday, he will perform a surgery that is 3 1/2 years overdue.
We are praying for a miracle, and we are asking others to pray with us. I firmly believe that there will be a miracle, because God has already started it! The tiny amount of vision she has now is, without a doubt, a miracle. She should not be able to see anything at this point, but if I hold my hand out with a toy in it she will reach out and take the toy without hesitation and without missing her aim. If she is sitting on the floor near her toys, she will reach out and pick up something that is just sitting there inert. Without movement or sound or flashing lights as clues, she can find an object in 3D space. She loves to look at herself in the mirror. If I hold out my hand to her, she takes it. That's a miracle, and that's after four years of receiving no real treatment. What more will God do when the best doc in the region repairs the damage with a surgery shown to be 80% effective (assuming he opts for the open angle surgery, which I think he probably will based on my reading)?
It wouldn't be the first time he opened the eyes of the blind.
In short, we knew when we adopted our daughter that she has congenital glaucoma, meaning that she had been born with improper drainage of the fluid in her eye leading to increased eye pressure. This increased pressure causes blindness by damaging the retina and optic nerve, the degree of the damage being related to the amount of blockage and how long it is left untreated. When we brought her home, we knew that she could see lights and outlines, high contrast and bright light being easiest for her.
The ophtho was amazed at what she found. Normal eye pressures are in the 10-20 range. At 30, the doctors are alarmed. Hers was almost 60 in each eye! (The dr. compared it to having a blood pressure of 400/240.) Congenital glaucoma is always treated with surgery in the US, typically performed by 6 months of age. Geri was diagnosed at 6 months, received no treatment at all until 3 years, and then was given eye drops. Drops which the doc said are the least effective ones they could possibly prescribe. The pressure of her eyes has caused them to swell, stretching the cornea and causing clouding due to the tissue being essentially pulled to the breaking point.
The first words out of the the doc's mouth was "Has she been evaluated at the School for the Deaf and Blind?" She assumed, just looking at our daughter, that she was entirely blind.
She was shocked to find that she is most certainly not. She repeatedly said that Geri should NOT be able to see as much as she can. She was amazed to see our daughter track objects, reach for them, and follow light with her eyes. She was so amazed that she actually called a med student in from home to see our daughter because she said he would never see anything like this again. She examined Geri's retinas to see how many blood vessels are still intact. Over time, the pressure kills off the blood vessels and the loss of those vessels causes a corresponding loss of vision. She expected to find around 20-50% of the vessels still intact.
They were completely intact. Near as she could tell, and our daughter was not cooperating so there is a margin of error here, there was almost no loss of blood vessels in her eyes. There was evidence of damage to the optic nerve, but that doesn't relate as directly to loss of vision as the condition of the retina.
There is still a chance of regaining some of her vision. The doc said that, in her opinion, it's possible. It shouldn't be, but it is.
Next Tuesday we will take her to Denver to meet the surgeon and get his opinion. The surgery will happen regardless of whether he predicts any potential gains in vision, but it will be interesting to hear what he thinks. If nothing else, reducing her pressure will make her more comfortable. On Wednesday, he will perform a surgery that is 3 1/2 years overdue.
We are praying for a miracle, and we are asking others to pray with us. I firmly believe that there will be a miracle, because God has already started it! The tiny amount of vision she has now is, without a doubt, a miracle. She should not be able to see anything at this point, but if I hold my hand out with a toy in it she will reach out and take the toy without hesitation and without missing her aim. If she is sitting on the floor near her toys, she will reach out and pick up something that is just sitting there inert. Without movement or sound or flashing lights as clues, she can find an object in 3D space. She loves to look at herself in the mirror. If I hold out my hand to her, she takes it. That's a miracle, and that's after four years of receiving no real treatment. What more will God do when the best doc in the region repairs the damage with a surgery shown to be 80% effective (assuming he opts for the open angle surgery, which I think he probably will based on my reading)?
It wouldn't be the first time he opened the eyes of the blind.
Wednesday, December 21, 2011
Christmas Pictures
Long overdue, here are some of our family photos!!
Lessons learned: try on the dresses beforehand. Kids' clothes are sized so funny... Geri's dress was crazy short!! We had to get her a different one for church on Christmas day. It just didn't feel appropriate to flash the congregation... Well, not for her at least. I'm still deciding if I want to. jk
Oh, and it's ok that we cut a tree down from the side of the road. We had a special permit from the forest department, and it was in the cutting zone. :)
 |
| A family complete at last! |
 |
| Our Kiddos! |
 |
| All three sucking their thumbs. For the record, TJ just did it for the pic. |
 |
| Our side of the road tree. Literally. |
 |
| Kicking it on the little couch |
 |
| The Memorex shot... |
 |
| The new arrival! |
 |
| She tolerates us ok. :) |
 |
| Beautiful girl! |
 |
| Still in love. :) |
 |
| Can you believe they let us be in charge? |
 |
| We will always have a special bond from our time as a family of two. |
Oh, and it's ok that we cut a tree down from the side of the road. We had a special permit from the forest department, and it was in the cutting zone. :)
Monday, December 19, 2011
Another Week.... This makes 5
So today marks 5 weeks since we took our girl out of the orphanage, one month home in the U.S. To celebrate, Baby Girl and I have both gotten sick. Still, there's a lot of good news for the week.
It looks like Princess is starting to take naps. This is both a good thing and a bad thing. Good, because she needs them and it improves everyone's mood in the afternoon. Bad because it gives her more energy to fight falling asleep at bedtime. Still, the sleep issues are improving overall. We have purchased a rocking chair for the bedroom and now we hold her and rock her each night and she is very good about it. It's nice to have her snuggle up.
She's starting to show some nice signs of forming a bond with us. The other day she picked me over a neighbor who was offering to walk her. She turned right back to me and wanted to be picked up. She has also stopped trying to launch herself into the arms of anyone who gets close. She also wants to be with us more around the house. She used to go around exploring on her own sometimes, but now she wants to follow us and even vocalizes for us when we leave the room. Again, a good sign of a growing bond.
We had the appointment with the cardiologist this week and found out that our little Princess has two very minor heart defects. She has a VSD, or "little hole between the two chambers", and a bicuspid valve. The VSD could actually close on it's own as she gets older, but the valve issue is permanent. Still, the dr. said it won't keep her from doing anything and that, if she ever did need surgery for it, it would not be until she was much older. He cleared her for anesthesia, which paves the way for treatment of her eyes and for various other procedures she needs. We get to clean her teeth! Yay!
The Prevacid seems to be helping with her acid reflux. Her breath smells a LOT better these days! haha
Oh, and I almost forgot the biggest good news of the week... a bath!! Not any bath, but a HAPPY one!! I think I already blogged about our new method of putting her in the empty tub, stopping it up, and turning on the hand sprayer to let her play in the spray while it fills up around her. This has worked twice, so I'm declaring victory. It's a lot better than before, when she would scream and cry while we plopped her in the tub and hastily washed her.
Overall, we're doing fine aside from this little bug that has mom and sister out of it. Big Brother is in Michigan for a visit with his grandparents and I miss him like mad, but he's having lots of fun so it's worth it.
We're still standing, by the grace of God. :) What more can you ask for?
It looks like Princess is starting to take naps. This is both a good thing and a bad thing. Good, because she needs them and it improves everyone's mood in the afternoon. Bad because it gives her more energy to fight falling asleep at bedtime. Still, the sleep issues are improving overall. We have purchased a rocking chair for the bedroom and now we hold her and rock her each night and she is very good about it. It's nice to have her snuggle up.
She's starting to show some nice signs of forming a bond with us. The other day she picked me over a neighbor who was offering to walk her. She turned right back to me and wanted to be picked up. She has also stopped trying to launch herself into the arms of anyone who gets close. She also wants to be with us more around the house. She used to go around exploring on her own sometimes, but now she wants to follow us and even vocalizes for us when we leave the room. Again, a good sign of a growing bond.
We had the appointment with the cardiologist this week and found out that our little Princess has two very minor heart defects. She has a VSD, or "little hole between the two chambers", and a bicuspid valve. The VSD could actually close on it's own as she gets older, but the valve issue is permanent. Still, the dr. said it won't keep her from doing anything and that, if she ever did need surgery for it, it would not be until she was much older. He cleared her for anesthesia, which paves the way for treatment of her eyes and for various other procedures she needs. We get to clean her teeth! Yay!
The Prevacid seems to be helping with her acid reflux. Her breath smells a LOT better these days! haha
Oh, and I almost forgot the biggest good news of the week... a bath!! Not any bath, but a HAPPY one!! I think I already blogged about our new method of putting her in the empty tub, stopping it up, and turning on the hand sprayer to let her play in the spray while it fills up around her. This has worked twice, so I'm declaring victory. It's a lot better than before, when she would scream and cry while we plopped her in the tub and hastily washed her.
Overall, we're doing fine aside from this little bug that has mom and sister out of it. Big Brother is in Michigan for a visit with his grandparents and I miss him like mad, but he's having lots of fun so it's worth it.
We're still standing, by the grace of God. :) What more can you ask for?
Tuesday, December 13, 2011
Answered Prayers ROCK!!
I'm amazed by the times that God answers prayers very quickly and clearly.
Today was a ROUGH day. When Nick called around 9:45 to see how I was doing, we were about 45 minutes into a dual child meltdown. This was the second such meltdown of the morning. I was about ready to dissolve into a puddle of tears myself, so he hightailed it home from work to help. While he gave the girls their snack, I went into the other room to bawl and emerged rather bummed and listless. I sludged through the early afternoon, and all of his praise and pep talks did little to help. I was feeling horribly overwhelmed, to the point of yelling at God "why did you ask me to do this?"
After picking up Big Bro from school, we hit the Walgreen's for a couple of errands and when we got the whole brood back to the car Nick said "Let's just go for a drive in the mountains." I was so glad he said that, because I honestly didn't feel ready to go home and try to engage in being mom right yet.
During our drive I told him "Right now, the prayer of my heart is this - 'God, I know it's all going to work out and be okay, but I need you to say it right now. I need to hear it, from you, that everything will be alright. I know it's in the Bible, I know it's in your character, I know all of that but I've just got to hear it from you right now.'" Now, I'm not nutty enough to mean that I thought God would split the sky to say in a booming voice "It's all good, Lauren. Chill," but I was hoping for some sort of sense of peace or a feeling of reassurance or something. We headed home, my heart still heavy in my chest.
When we got home, I felt a sudden burst of renewed emotional energy and I brought our new little Princess into with me while I cooked dinner. Then, at dinner, she decided to start exploring her food. This is VERY new for her, and it's a very nice development. She even ate with her hands a bit, which is huge. And yet, the best was still to come. After all that food play, I realized she was going to have to have a bath. This has been her hardest area - bathing. Baths are spent screaming and crying, then getting on her PJs causes more of a fit, and it puts her in a miserable mood until she falls asleep... which takes longer when she's so unnerved. I decided a new approach was in order, so I tried something a bit different.
If you are in the above situation, I invite you to steal this idea because it WORKED. I sat her in the empty tub, turned on the water and use the hand sprayer to spray water over her feet and legs. At first she cried, but soon she was reaching for and splashing in the spray. I stopped up the tub and allowed the water from the sprayer to slowly fill it. As the water rose, so did her confidence and the amount of fun she was having. Eventually, she was splashing in the water and playing with bath toys. We even put her sister in the tub with her (Baby Girl needed a bath badly) and the two of them played together. It was amazing, watching her have so much fun in the bath that had scared her to death before. She remained mostly calm during the PJs and was in a great mood for bedtime. In fact, it took forever to put her to sleep because she was so pumped and happy that she was having a hard time settling down! She was feeling too playful to sleep!
God is so good, and I'm so grateful that He answers prayer.
Today was a ROUGH day. When Nick called around 9:45 to see how I was doing, we were about 45 minutes into a dual child meltdown. This was the second such meltdown of the morning. I was about ready to dissolve into a puddle of tears myself, so he hightailed it home from work to help. While he gave the girls their snack, I went into the other room to bawl and emerged rather bummed and listless. I sludged through the early afternoon, and all of his praise and pep talks did little to help. I was feeling horribly overwhelmed, to the point of yelling at God "why did you ask me to do this?"
After picking up Big Bro from school, we hit the Walgreen's for a couple of errands and when we got the whole brood back to the car Nick said "Let's just go for a drive in the mountains." I was so glad he said that, because I honestly didn't feel ready to go home and try to engage in being mom right yet.
During our drive I told him "Right now, the prayer of my heart is this - 'God, I know it's all going to work out and be okay, but I need you to say it right now. I need to hear it, from you, that everything will be alright. I know it's in the Bible, I know it's in your character, I know all of that but I've just got to hear it from you right now.'" Now, I'm not nutty enough to mean that I thought God would split the sky to say in a booming voice "It's all good, Lauren. Chill," but I was hoping for some sort of sense of peace or a feeling of reassurance or something. We headed home, my heart still heavy in my chest.
When we got home, I felt a sudden burst of renewed emotional energy and I brought our new little Princess into with me while I cooked dinner. Then, at dinner, she decided to start exploring her food. This is VERY new for her, and it's a very nice development. She even ate with her hands a bit, which is huge. And yet, the best was still to come. After all that food play, I realized she was going to have to have a bath. This has been her hardest area - bathing. Baths are spent screaming and crying, then getting on her PJs causes more of a fit, and it puts her in a miserable mood until she falls asleep... which takes longer when she's so unnerved. I decided a new approach was in order, so I tried something a bit different.
If you are in the above situation, I invite you to steal this idea because it WORKED. I sat her in the empty tub, turned on the water and use the hand sprayer to spray water over her feet and legs. At first she cried, but soon she was reaching for and splashing in the spray. I stopped up the tub and allowed the water from the sprayer to slowly fill it. As the water rose, so did her confidence and the amount of fun she was having. Eventually, she was splashing in the water and playing with bath toys. We even put her sister in the tub with her (Baby Girl needed a bath badly) and the two of them played together. It was amazing, watching her have so much fun in the bath that had scared her to death before. She remained mostly calm during the PJs and was in a great mood for bedtime. In fact, it took forever to put her to sleep because she was so pumped and happy that she was having a hard time settling down! She was feeling too playful to sleep!
God is so good, and I'm so grateful that He answers prayer.
Monday, December 12, 2011
Weekly Recap Celebration!
Tomorrow marks one month since the day we took our beautiful daughter out of the orphanage forever! It's flown, truly flown, but it's been great. This week, though, has been especially awesome because we seem to have hit a true turning point.
Most of the week was pretty "normal", if you can call it that, but Friday was nuts. It seemed like, from the moment she woke up, our new Princess was holding us at distance and determined to go it alone. She threw fit after fit, rejected my attempts to comfort her, was completely unable to focus. She ate poorly, was generally grumpy and unhappy. It wasn't just a bad day, though. I could feel this tension, this wall, that she was putting up between us. Her distrust was palpable. The day before, I had felt as if we were starting to develop a real connection, so Friday was deeply disappointing for me. I put in my best effort, I was consistent and patient... but by the time it was three in the afternoon I needed a break. The physical toil was painful, but it was nothing compared to the emotional toll of this new coldness between us. I called Nick and asked him to come home early and let me go get my hair and my sanity did.
When he came home and relieved me, I have to admit that I was at my wits end. I had spent the entire day attempting to calm a screaming toddler, and often she would set off the other toddler and I would be trying to manage two at once. I love my kids, but I needed to get in the car alone and go somewhere they weren't because it gave me a much-needed opportunity to talk to God and cry my eyes out so I could come back renewed, which is the amazing miracle He always works for me when I truly need it.
The hardest part was the giant step back. We had been making good progress in terms of her ability to trust us and connect with us, and there was lots of spontaneous contact developing and good interactive play. She was really enjoying us and vice versa, and suddenly it was all lost. It broke my heart to see her past sneak up and pull her down when we were starting to move forward.
I realize now that Friday was a decision day for her. She was struggling so hard that day, trying to decide if she was really going to trust us. She was testing us, all day, and we somehow managed to pass it because on Saturday the wall came back down and now we are at a new level of connection that is beautiful. It's still hard for her, as she tries to process some of the other people in her life and figure out this confusing new dynamic, but she's clearly doing better than ever and trusting us more than before. It's even become easier to give her the medicines she needs... although bath time remains as challenging as ever.
Friday was a hard day, but on Saturday we reaped the rewards of loving her through the storm. In fact, it just proved what I've been feeling for a while now. Sometimes, truly loving your kids is a lot like hugging a tornado. And yet, it's so amazingly worth the effort.
Most of the week was pretty "normal", if you can call it that, but Friday was nuts. It seemed like, from the moment she woke up, our new Princess was holding us at distance and determined to go it alone. She threw fit after fit, rejected my attempts to comfort her, was completely unable to focus. She ate poorly, was generally grumpy and unhappy. It wasn't just a bad day, though. I could feel this tension, this wall, that she was putting up between us. Her distrust was palpable. The day before, I had felt as if we were starting to develop a real connection, so Friday was deeply disappointing for me. I put in my best effort, I was consistent and patient... but by the time it was three in the afternoon I needed a break. The physical toil was painful, but it was nothing compared to the emotional toll of this new coldness between us. I called Nick and asked him to come home early and let me go get my hair and my sanity did.
When he came home and relieved me, I have to admit that I was at my wits end. I had spent the entire day attempting to calm a screaming toddler, and often she would set off the other toddler and I would be trying to manage two at once. I love my kids, but I needed to get in the car alone and go somewhere they weren't because it gave me a much-needed opportunity to talk to God and cry my eyes out so I could come back renewed, which is the amazing miracle He always works for me when I truly need it.
The hardest part was the giant step back. We had been making good progress in terms of her ability to trust us and connect with us, and there was lots of spontaneous contact developing and good interactive play. She was really enjoying us and vice versa, and suddenly it was all lost. It broke my heart to see her past sneak up and pull her down when we were starting to move forward.
I realize now that Friday was a decision day for her. She was struggling so hard that day, trying to decide if she was really going to trust us. She was testing us, all day, and we somehow managed to pass it because on Saturday the wall came back down and now we are at a new level of connection that is beautiful. It's still hard for her, as she tries to process some of the other people in her life and figure out this confusing new dynamic, but she's clearly doing better than ever and trusting us more than before. It's even become easier to give her the medicines she needs... although bath time remains as challenging as ever.
Friday was a hard day, but on Saturday we reaped the rewards of loving her through the storm. In fact, it just proved what I've been feeling for a while now. Sometimes, truly loving your kids is a lot like hugging a tornado. And yet, it's so amazingly worth the effort.
Thursday, December 8, 2011
The kids are allright
I bet some people were starting to wonder if we still have those other two... the answer is yes, we do. I've been blogging primarily about our new Princess because I see this as an opportunity to tell the world what adopting internationally is really like. I'd be remiss, however, if I left out the other kiddos.
Baby Girl is learning to share. She's not good at it. In fact, it's not that she doesn't have any idea about it at all. It's worse - she had entirely the wrong idea about it. She walks up to her sister and says "share! share!" and then proceeds to take whatever toy her sister was playing with. Sharing means taking things from other people.
I'm not terribly surprised, though. Due to the age difference between Baby Girl and Big Brother, she has lots of time during the day where he is gone and when he does come home they don't want the same things. I can also appeal to her older brother in a logical manner and easily correct scuffles by saying "whose toy is it?" Not so with two girls who are effectively the same age. They want the same toys, and they have a mutual pool of toys to share, so lines of ownership are not as clear.
I have, however, noticed some really cute interaction. Sometimes the girls will trade toys back and forth or play together, and that's nice. Baby Girl is very interested in her big sister and wants to help her. This whole experience might be helping Baby Girl to become more social, too. At church this week, she voluntarily went to Sunday School! And had fun!
Big Brother has reached a state of peace about his new sister. I try to ask him what he thinks and talk with him, and it's revealing. One day he said "Mom, she needs you all the time!" and then, a few minutes later, said "I changed my mind. Geri needs you a lot right now so it's good when you help her." I thought my heart would pop with pride when my boy said that little bit of selfless wisdom! I've been making a big effort to give him about 5-10 minutes of cuddle time before bed. We lay on his bed and talk about the sort of things a 5-year-old boy is interested in... mainly robots, superheroes, space travel, and electricity. Oh, and home improvements. He's very interested in talking about the various major projects I have in mind for the house. He's the next Bob Vila.
Just the other night he asked me if he could bring his sister to school as show and tell. He said he wants to introduce her to his class and tell them about how her eyes are bad so mommy and Nick give her drops and she hates it. As she is a person and not an object, she's not going to be her brother's show and tell. However, he has a class party for Christmas on the 15th and we will attend so he can introduce her to his friends.
He continues to do well in school, tempted by stickers that earn rewards, and I'm always amazed with the things he says. And the things he does. He's a ball of energy - lots of thrust, no vector - and I have to keep telling him to chill out and leave my butt alone. Sigh.
All in all, the kids are fine. They're coming together, no one seems to be feeling particularly lost or neglected, and everyone is basically getting along. Sort of. Mostly. In a way.
Close enough for government work!
Baby Girl is learning to share. She's not good at it. In fact, it's not that she doesn't have any idea about it at all. It's worse - she had entirely the wrong idea about it. She walks up to her sister and says "share! share!" and then proceeds to take whatever toy her sister was playing with. Sharing means taking things from other people.
I'm not terribly surprised, though. Due to the age difference between Baby Girl and Big Brother, she has lots of time during the day where he is gone and when he does come home they don't want the same things. I can also appeal to her older brother in a logical manner and easily correct scuffles by saying "whose toy is it?" Not so with two girls who are effectively the same age. They want the same toys, and they have a mutual pool of toys to share, so lines of ownership are not as clear.
I have, however, noticed some really cute interaction. Sometimes the girls will trade toys back and forth or play together, and that's nice. Baby Girl is very interested in her big sister and wants to help her. This whole experience might be helping Baby Girl to become more social, too. At church this week, she voluntarily went to Sunday School! And had fun!
Big Brother has reached a state of peace about his new sister. I try to ask him what he thinks and talk with him, and it's revealing. One day he said "Mom, she needs you all the time!" and then, a few minutes later, said "I changed my mind. Geri needs you a lot right now so it's good when you help her." I thought my heart would pop with pride when my boy said that little bit of selfless wisdom! I've been making a big effort to give him about 5-10 minutes of cuddle time before bed. We lay on his bed and talk about the sort of things a 5-year-old boy is interested in... mainly robots, superheroes, space travel, and electricity. Oh, and home improvements. He's very interested in talking about the various major projects I have in mind for the house. He's the next Bob Vila.
Just the other night he asked me if he could bring his sister to school as show and tell. He said he wants to introduce her to his class and tell them about how her eyes are bad so mommy and Nick give her drops and she hates it. As she is a person and not an object, she's not going to be her brother's show and tell. However, he has a class party for Christmas on the 15th and we will attend so he can introduce her to his friends.
He continues to do well in school, tempted by stickers that earn rewards, and I'm always amazed with the things he says. And the things he does. He's a ball of energy - lots of thrust, no vector - and I have to keep telling him to chill out and leave my butt alone. Sigh.
All in all, the kids are fine. They're coming together, no one seems to be feeling particularly lost or neglected, and everyone is basically getting along. Sort of. Mostly. In a way.
Close enough for government work!
Bearing Witness
Every day, twice daily, I have the opportunity to bear witness as my daughter faces her deepest fear - the vulnerability of sleep.
I must admit that I have only recently started thinking of it this way. At first, the task of putting her to sleep felt arduous and stressful. It was hard to pick which was worse - nap time, when I was guaranteed failure, or bed time, when I was guaranteed success but would have to fight hard for it when already exhausted myself. It's not surprising that, with that mindset, I was losing patience. For a while Nick and I traded off, but that seemed to be adding to her anxiety and just making the whole thing worse. We decided that I would take over all sleep routines, since I needed to be able to put her down for a nap and she needed the same person to put her down every time. I think it took me about a day to get burned out.
Then, I was sitting with her and I had a revelation. Her sister was already napping in the other room, and I had a list of things I "needed to do" running through my mind. Suddenly, a little voice said "What do you have to do that is more important than this?" Ummm.... nothing.
See, every time she falls asleep she is facing down a huge fear. She's used to facing it alone, and she's used to fighting like hell. She knows that I'm nice and I take good care of her, but she's not yet sure if she can truly trust me. Her sleep routine is a great opportunity to teach her to trust me, and if I can view it that way then I'll be able to appreciate the gift that it is. If I am worried about the end goal, about getting her to fall asleep, then I am setting myself up for frustration.
So now, I view it as bearing witness. I watch - watch as she fidgets and fusses and bites her own thumbs to stay awake and bangs her head against the bed to keep from falling asleep. I listen - listen as she babbles and giggles manically to keep herself up, listen as she cycles into the most fearful and despondent crying you ever heard, listen as she sucks her thumb and pats or rubs the mattress to stay awake, to feel safe. I feel the warmth when I'm holding her and she wets her diaper - feel that she is actually so scared that she loses control of her bladder. What scares YOU so much that you would pee your pants if you encountered it? I witness her battle, try to key in on what is truly happening here, and I do everything in my power to give her strength and comfort through my presence.
I try to be with her while she fights, to reassure her and teach her that this is a safe place and she can trust me to take care of her. She doesn't know what it means, yet, to have someone there to help you fight your battles. Every day, for an hour and a half in the afternoon and another 20 minutes at night when her exhaustion is my ally, I use gentle pressure from my hand and the sound of my voice to remind her that I'm still there and she's not alone.
For two hours every day my daughter fights to survive, or at least that's how she sees it, and I bear witness.
I must admit that I have only recently started thinking of it this way. At first, the task of putting her to sleep felt arduous and stressful. It was hard to pick which was worse - nap time, when I was guaranteed failure, or bed time, when I was guaranteed success but would have to fight hard for it when already exhausted myself. It's not surprising that, with that mindset, I was losing patience. For a while Nick and I traded off, but that seemed to be adding to her anxiety and just making the whole thing worse. We decided that I would take over all sleep routines, since I needed to be able to put her down for a nap and she needed the same person to put her down every time. I think it took me about a day to get burned out.
Then, I was sitting with her and I had a revelation. Her sister was already napping in the other room, and I had a list of things I "needed to do" running through my mind. Suddenly, a little voice said "What do you have to do that is more important than this?" Ummm.... nothing.
See, every time she falls asleep she is facing down a huge fear. She's used to facing it alone, and she's used to fighting like hell. She knows that I'm nice and I take good care of her, but she's not yet sure if she can truly trust me. Her sleep routine is a great opportunity to teach her to trust me, and if I can view it that way then I'll be able to appreciate the gift that it is. If I am worried about the end goal, about getting her to fall asleep, then I am setting myself up for frustration.
So now, I view it as bearing witness. I watch - watch as she fidgets and fusses and bites her own thumbs to stay awake and bangs her head against the bed to keep from falling asleep. I listen - listen as she babbles and giggles manically to keep herself up, listen as she cycles into the most fearful and despondent crying you ever heard, listen as she sucks her thumb and pats or rubs the mattress to stay awake, to feel safe. I feel the warmth when I'm holding her and she wets her diaper - feel that she is actually so scared that she loses control of her bladder. What scares YOU so much that you would pee your pants if you encountered it? I witness her battle, try to key in on what is truly happening here, and I do everything in my power to give her strength and comfort through my presence.
I try to be with her while she fights, to reassure her and teach her that this is a safe place and she can trust me to take care of her. She doesn't know what it means, yet, to have someone there to help you fight your battles. Every day, for an hour and a half in the afternoon and another 20 minutes at night when her exhaustion is my ally, I use gentle pressure from my hand and the sound of my voice to remind her that I'm still there and she's not alone.
For two hours every day my daughter fights to survive, or at least that's how she sees it, and I bear witness.
Sunday, December 4, 2011
Week 3 Recap and Progress
I can't keep up with the daily journal format, and you probably don't need all that detail, so here's a very general summary of the highlights. Hurray for brevity and ease!
It continues to be daily bits of progress in one area or another. One day she seems to do better in the car, meaning less self-soothing rocking, the next day she is calmer about playing on the floor, the following she might stand independently for a few seconds. I think if I were just watching one specific area, I would be thinking nothing were happening, but across the board it's constant progress. This week, her general comfort seems to be slowly but steadily increasing. We've noticed that she perks up when she comes home. She becomes more verbal, explores and plays better. Out of the house she sits in our laps or stays in our arms and becomes easily discomfited by noisy groups and lots of talk. She handles it like a trooper, and she seems less bothered by dispersed groups as in stores or restaurants, but she is visibly and notably more comfortable at home. She is less upset by me taking off her shirt, although she still hates it when Nick does it. Bedtime continues to get easier in tiny increments, but naptime I am not sure about. She flinches less when I touch her face and she seems less jumpy in general.
There are things that, of course, we are looking for in her development. I've been re-reading "Parenting your Internationally Adopted Child" by Dr. Patty Cogen and, while she shies away from an "ages and stages" approach with these kids, she points out some phases of adjustment that are helpful to watch for. We're not yet sure that we are seeing preferential clinginess (wanting Mom and Dad only to hold or care for her) because we really don't give her the chance to cling to others, but she did go to a friend briefly this week and very quickly wanted to go back to Dad. So perhaps we're on the right track there. The big development this week was pickiness with food. All of a sudden, she's the pickiest eater ever. Part of it, I think, is the thrill of being able to say no to something. I figure she didn't have that before. Part of it is probably the abundance of different foods. She's realized that, if she says no to a particular food, another food will quickly appear. I also think some of it is her growing hair. I know, it sounds silly, but her hair is growing out a bit and when she shakes her head vigorously it sort of swings and I think she likes it. It's the swishy skirt effect. All girls love the swishy skirt.
One of Dr. Cogen's other big issues is eye contact. Kids from an orphanage setting are notoriously bad at making eye contact, and it's an issue of control and of connection. Eye contact is very personal, and most of these kids have never had it. Well, our daughter is blind so initially I was tempted to write that whole issue off. I have since realized that, although she is essentially blind, she has her own version of eye contact. It's basically being face to face in close proximity. Sort of nose to nose. When she is in your arms and she turns her face towards yours, that's her way of sharing personal space and connecting. I try to keep an eye on her general willingness to do so, and it seems to be increasing.
I've also noted some really great interactive play. She will sit in one of our laps and play with a toy and she even hands things to us and tugs on us to do certain things. Also, during her water play in the sink she actually took hold of my hand and started splashing it in the water. So that seems, to me, to be a great start in that direction.
It's so hard, though, to gauge her progress. Some of the things that seem positive at first wag could be negative from another light. For two parents with aching backs and a mountain of chores piling up, it seems great when she plays alone for a bit. But if she's not checking in during the playtime then it's not good for her attachment. If she seems to cling to us, we celebrate. But if she clings too soon it may just be an indication of her deep fear of further change, not of any real bond with us. Right now it seems as though there's no way to win. And the sudden food pickiness is supposed to be a good thing, but it doesn't feel like that when you're on the sixth food option in one sitting and she shakes her head again.
Suffice it to say, I've had to redefine my concept of progress. First, I've had to drop the idea that it would be like landmarks on a road trip. "Ok, here's the junction of 25 and 70, so I must be going in the right direction." Second, I've had to set my sights for generally heading in a roughly positive direction. I feel like I'm driving to Rhode Island with no compass or map and directions that go sort of like "Head East-ish and keep going until you get someplace nice."
It continues to be daily bits of progress in one area or another. One day she seems to do better in the car, meaning less self-soothing rocking, the next day she is calmer about playing on the floor, the following she might stand independently for a few seconds. I think if I were just watching one specific area, I would be thinking nothing were happening, but across the board it's constant progress. This week, her general comfort seems to be slowly but steadily increasing. We've noticed that she perks up when she comes home. She becomes more verbal, explores and plays better. Out of the house she sits in our laps or stays in our arms and becomes easily discomfited by noisy groups and lots of talk. She handles it like a trooper, and she seems less bothered by dispersed groups as in stores or restaurants, but she is visibly and notably more comfortable at home. She is less upset by me taking off her shirt, although she still hates it when Nick does it. Bedtime continues to get easier in tiny increments, but naptime I am not sure about. She flinches less when I touch her face and she seems less jumpy in general.
There are things that, of course, we are looking for in her development. I've been re-reading "Parenting your Internationally Adopted Child" by Dr. Patty Cogen and, while she shies away from an "ages and stages" approach with these kids, she points out some phases of adjustment that are helpful to watch for. We're not yet sure that we are seeing preferential clinginess (wanting Mom and Dad only to hold or care for her) because we really don't give her the chance to cling to others, but she did go to a friend briefly this week and very quickly wanted to go back to Dad. So perhaps we're on the right track there. The big development this week was pickiness with food. All of a sudden, she's the pickiest eater ever. Part of it, I think, is the thrill of being able to say no to something. I figure she didn't have that before. Part of it is probably the abundance of different foods. She's realized that, if she says no to a particular food, another food will quickly appear. I also think some of it is her growing hair. I know, it sounds silly, but her hair is growing out a bit and when she shakes her head vigorously it sort of swings and I think she likes it. It's the swishy skirt effect. All girls love the swishy skirt.
One of Dr. Cogen's other big issues is eye contact. Kids from an orphanage setting are notoriously bad at making eye contact, and it's an issue of control and of connection. Eye contact is very personal, and most of these kids have never had it. Well, our daughter is blind so initially I was tempted to write that whole issue off. I have since realized that, although she is essentially blind, she has her own version of eye contact. It's basically being face to face in close proximity. Sort of nose to nose. When she is in your arms and she turns her face towards yours, that's her way of sharing personal space and connecting. I try to keep an eye on her general willingness to do so, and it seems to be increasing.
I've also noted some really great interactive play. She will sit in one of our laps and play with a toy and she even hands things to us and tugs on us to do certain things. Also, during her water play in the sink she actually took hold of my hand and started splashing it in the water. So that seems, to me, to be a great start in that direction.
It's so hard, though, to gauge her progress. Some of the things that seem positive at first wag could be negative from another light. For two parents with aching backs and a mountain of chores piling up, it seems great when she plays alone for a bit. But if she's not checking in during the playtime then it's not good for her attachment. If she seems to cling to us, we celebrate. But if she clings too soon it may just be an indication of her deep fear of further change, not of any real bond with us. Right now it seems as though there's no way to win. And the sudden food pickiness is supposed to be a good thing, but it doesn't feel like that when you're on the sixth food option in one sitting and she shakes her head again.
Suffice it to say, I've had to redefine my concept of progress. First, I've had to drop the idea that it would be like landmarks on a road trip. "Ok, here's the junction of 25 and 70, so I must be going in the right direction." Second, I've had to set my sights for generally heading in a roughly positive direction. I feel like I'm driving to Rhode Island with no compass or map and directions that go sort of like "Head East-ish and keep going until you get someplace nice."
Subscribe to:
Posts (Atom)