Saturday, May 27, 2017
Tsvetomira is home.
Back where she belongs.
Now to get this household back in working order after a week of survival!
Wednesday, May 24, 2017
Out of the PICU
She is still getting some supplemental oxygen, and x-rays are showing she still have plenty of gunk in her lungs, so no one is talking about discharge yet, but it's still a move in the right direction!
Thanks to many friends and family, we have been able to keep things moving along as a single parent household, and Matt is even getting a (little) bit of his work done, too.
It's so good to see her little face looking so much more like herself! Going into this hospitalization, I couldn't help but think happily that she's never been so robust going into a bout of pneumonia as she is this time around!
Tuesday, May 23, 2017
A quick one on Tsvetomira
We're still in the pediatric intensive care unit, but I have a feeling that if they needed the space here for anyone else, we'd be the ones moved on to a more basic ward. That's still the plan for later today, potentially, and for sure tomorrow.
Mira is now completely off any breathing assistance, and is just getting a little bit of oxygen, though even that level they've been tapering off, and she's keeping her saturation in the upper 90s or at 100, so that's all good.
She's a little bit agitated this morning, but our best guess is that she is hungry (they just a few minutes ago started her on a low volume of her continuous feed - otherwise she hadn't been getting anything other than iv fluids since coming to the ER on Sunday), or that she needs to fill her diaper. It's a pretty low-grade agitation, so we're taking it slowly and giving her time for us to try these pieces.
She's been awake a bit, but mostly sleeping. Last night was very uneventful - I slept through the whole night, not even waking when they came in to change and roll her.
Still no talk about when she's coming home, so we're still coordinating with friends to get the coverage we need to keep life moving along with the regular weekly appointments for the other kids (Bogomila especially does NOT like to miss her physical therapy sessions!)
So, all is well on the Mira front (or at least as well as can be for a child in the intensive care unit!) and things are all moving in an upward direction.
Mira is now completely off any breathing assistance, and is just getting a little bit of oxygen, though even that level they've been tapering off, and she's keeping her saturation in the upper 90s or at 100, so that's all good.
She's been awake a bit, but mostly sleeping. Last night was very uneventful - I slept through the whole night, not even waking when they came in to change and roll her.
Still no talk about when she's coming home, so we're still coordinating with friends to get the coverage we need to keep life moving along with the regular weekly appointments for the other kids (Bogomila especially does NOT like to miss her physical therapy sessions!)
So, all is well on the Mira front (or at least as well as can be for a child in the intensive care unit!) and things are all moving in an upward direction.
The ones left behind
[This is a post I started writing when Mira was in the hospital soon after we came home from Bulgaria with our girls in January. It's just taken me this long to get it to a stage where its complete enough to post...and apparently that required another hospital stay to provide the chunk of continuous time I needed to write!]
On one of the last nights of Mira's [initial] stay at Gillette, I was home for supper/bedtime as Matt and I had taken to doing to try to give some sense of normalcy to Bogomila (who didn't yet know what normal was) and the others (who do, and knew that things were definitely not normal!)
As we finished supper, and most of the children disappeared from the table, Matt gave me the update on Bogomila's physical therapy session that morning. (By the way, how marvelous is it that she'd been home just over a week, and had already had her second PT visit!!)
His news was so good, and yet it was devastating to me at the same time. First, the news: Lori, Krassimir and Bogomila's physical therapist, thinks that it's within the range of possible [important to not read more into that than what is there - it's also possible that this won't be the case, but still...] that Bogomila could be walking within two to three years.
Did you read that? Walking!!!
And, to clarify, she's not talking about walking with a walker, or with crutches, but just plain old two-feet, two-legs walking.
She will likely not be able to go on long hikes, and her chair will still be a regular part of her routine, but it's possible that she could use her chair to come into the house, and be able to get around at home just by walking. Or she could go to the library, and leave her chair by the coats, and walk around to get what she wants. Fatigue, not ability, will be her limiting factor.
Can you believe that! We are SO excited for her. On our last Skype call with her before we left for the pick up trip, one of the very last things she told us is that she wants to start physical therapy right away because she wants to be able to walk. So we did. And it looks very possible that she may.
And yet, does hearing that raise the same sort of just-not-okay in your very core that it does in mine? My response was immediate, unstoppable tears.
Can you imagine what would have been possible for her had someone begun working with her a year ago? Five years, ten years ago??? Cerebral palsy, although not a progressive disease, does have progressive consequences when not addressed appropriately. Oh, what time has robbed from her!
And time.
Time.
We got her in time. Every country is different. In Bulgaria, a child's I800-A has to be submitted to the US immigration office before the child's sixteenth birthday. We made that deadline with about six months to spare. No problem.
What if we hadn't? Well, her celebration of her sixteenth birthday would have sealed her fate. At eighteen, the children age out of the government-run institutions. Although it is possible to have a five year window of a sort of grace period, once that runs out, every one of these children who is unable to make it on their own is moved to an adult mental institution.
And how, I will ask you, is ANY child who is alone in the world, no family, no friends on the "outside," going to make it in a society that has no place for disabilities? A person in a wheelchair in Bulgaria is completely dependent on the assistance of others to be able to go about their daily life. There have been enough changes in the United States over the last decades that, although there are still inequalities, it is possible for someone to live independently in a wheelchair. There are transportation options, there are housing options, there are shopping options, there are job opportunities, curb cuts at most intersections, automatic doors on many buildings, and wide enough aisles at the grocery store. Sure, there are some things you still just can't do, but you can live.
That's not an option for these children, nor for those in many other countries with a similar lack of infrastructure and a general lack of acceptance of different abilities.
The cycle is painful - at birth, the parents of any child with a disability are counseled, usually by those in the medical profession, to give up their parental rights and have their child placed in an institution. There is no future for such children, they are told. Because those children are hidden away, there is no pressing need to make the elements of daily life accessible to people like them. Because everyone believes they will never amount to anything, no one invests in them, and guess what - they never amount to anything! The professionals believe that their original determinations were validated, and so the cycle repeats and repeats and repeats.
I've heard criticisms of international adoption saying that the very existence of international adoption helps to propagate the cycle. It becomes financially beneficial to have foreigners coming in and spending money during the adoption process - hotels, souveniers, restaurants, jobs for the translators, the legal people, etc, etc. True or not, I'm still faced with the fact that while with time and external (and internal) pressure, it is possible for a society to change, there are children RIGHT NOW who do not have the luxury of waiting!! How long does it take for things to change? Ten years? Fifty years? Certainly more than 6 months.
How many more lives are being slowly thrown away as time keeps marching on?
This is one of the many good-bye photos we took before swooping up our Bogomila and driving her away to live with her forever family.
Three smiling faces, and my heart can barely stand the ache. Bogomila's roommate, on the right, is nineteen. I can hardly type this through my tears!!! It is too late for her!! Right now she lives in a nice new, tidy, accessible group home, with caring staff, and her own laptop, but her clock is ticking, and the day will come when she will very well be sentenced to live out what remains of her life in an adult mental institution.
Bogomila told us that first week while we were still in Sofia that she wanted to buy a red watch to send to her roommate. A nice one, with extra batteries, since the ones she has in Bulgaria always seem to stop working. It is a very sweet gesture, but to me feels like a band-aid on the papercut of a person whose three other limbs have just been severed by a chainsaw.
Forget the paper cut! We need to stop the bleeding!!!!!!! But we can't. It's too late. We can't.
It's too late.
Matt and I were both crying over her that night after supper. Isn't there any way? She's over eighteen, she could make her own choices, right?...what if we paid her way? She could live with us until she could get her feet under her. She wouldn't be our daughter, but we could find a place for her!! Could we help her find her way to a life here? Her life is at stake!!!
But I don't believe there's anything we can do.
What are the chances of her actually getting issued a visa? And while the process of US citizenship is pretty easy for a child who is adopted by a U.S. family, it's not so simple otherwise. I don't even really have any idea what something like that would all entail.
All I know is that her time has run out. She is too old to become part of a family, and within a few years she will be placed in an adult mental institution where her physical handicap will likely render her life a very short one. In a survival of the fittest/strongest atmosphere, her intellectual capacity, sufficient as it is for every day life, is not likely going to be enough to keep her alive.
I know less about the young man on Bogomila's other side. I know that he's cheerful, easy going, and had his camera all ready for some last pictures. His speech is somewhat slurred, but the Bulgarian speakers around him don't have trouble understanding what he wants. His sweet smile is engaging and contagious...
How long does he have? Does he even have any time left?? Does he even have the paperwork that makes him eligible for adoption? I don't know.*
But I do know that there are many others who ARE ready. Who are waiting. Whose lives are slowly ticking away, every day, every hour that much closer to it being too late. That many more opportunities are being lost forever as time and nothingness strip away the potential that is locked up inside each and every one.
We spent the first few weeks after Bogomila arrived home shopping for little presents not only for her roommate, but for every other person living there. Each gift so unique - the young man in the photo above likes to read, so we found a Bulgarian copy of Around the World in Eighty Days for him. Another girl likes music, so she picked out a stuffed animal with a wind up music box inside. One younger boy got a toy car; another friend got a flash drive. These are real people! Not just faces or files, not just generic "orphans." Each one a real, unique person with the same real need to be loved and cared for that anyone else in the world has. Each one a person who has lost any chance they had of being a treasured part of a family.
I don't believe it is right for me to tell all of you reading that you need to get going and adopt a child (children??) because I do not believe there is a global Biblical command to adopt. Adoption is just one way to "care for the orphan." But it is absolutely, by far the best and most complete way to care for an orphan.
It also happens to be the way that is most invasive into the comfort of your own life.
I find it hard to believe that there isn't someone, and likely more than just one someone reading this right now who IS being directed by God to go and rescue one (or more!) of these precious human beings. (That's why I don't have to be the one to tell you to go!!) It is so easy to be oblivious to the impact of the steady march of time, oblivious to the suffering so many helpless children are going through right now, and have been going through for years when we live our comfortable lives in our comfortable routines. Are any of the reasons you have for choosing to not adopt reasons that are coming from the best interests of the child? Or all they all stemming from your own best interests?
I am painfully aware of how much fear drives the decisions of even those who call themselves God's people. Fear of the unknown, fear of being tied down, fear of not having enough money, fear of not being able to do what they want to do, fear of "scary" diagnoses, fear of what others will think, worrying about how it will affect your other kids, or your marriage, or your retirement. So counter that with this: If God is calling you to obey Him in this matter, do you really think this is anything other than the best thing for you? When it is EVER a good idea to say, "You know God, I know you're telling me to do this, but I don't think you've really thought it through, God." Do you really think that NOT obeying is going to work out? The longer I get into this obedience thing, the more I'm learning that the only thing to fear is to find yourself not walking with the best of your ability in perfect alignment with what your Lord is telling you to do.
If he's telling you to go, and if he is, you probably know it, what are you waiting for??? I'm not going to tell you you have to adopt a child. But I AM going to tell you that if you are one of God's people, then you have to be obedient to him!!
While you are waiting and wondering, "Is that really what I'm hearing from God?" they are waiting, too. Only their wait is one where every day marks a loss of what could have been, where every day is marching one day at a time closer to the point of no return when, like Bogomila's house mates, it will be too late.
Don't do it because of emotion, but don't NOT do it because of fear.
*Since beginning this post months ago, I have learned that only one of the other residents of Bogomila's home is young enough to be adopted. I do not know if that child is registered for adoption. But I do know that there are many, many children in Bulgaria alone who are waiting for families. If *anyone* wants to know more, there is a link to my email at the bottom of the blog.
On one of the last nights of Mira's [initial] stay at Gillette, I was home for supper/bedtime as Matt and I had taken to doing to try to give some sense of normalcy to Bogomila (who didn't yet know what normal was) and the others (who do, and knew that things were definitely not normal!)
As we finished supper, and most of the children disappeared from the table, Matt gave me the update on Bogomila's physical therapy session that morning. (By the way, how marvelous is it that she'd been home just over a week, and had already had her second PT visit!!)
His news was so good, and yet it was devastating to me at the same time. First, the news: Lori, Krassimir and Bogomila's physical therapist, thinks that it's within the range of possible [important to not read more into that than what is there - it's also possible that this won't be the case, but still...] that Bogomila could be walking within two to three years.
Did you read that? Walking!!!
And, to clarify, she's not talking about walking with a walker, or with crutches, but just plain old two-feet, two-legs walking.
She will likely not be able to go on long hikes, and her chair will still be a regular part of her routine, but it's possible that she could use her chair to come into the house, and be able to get around at home just by walking. Or she could go to the library, and leave her chair by the coats, and walk around to get what she wants. Fatigue, not ability, will be her limiting factor.
Can you believe that! We are SO excited for her. On our last Skype call with her before we left for the pick up trip, one of the very last things she told us is that she wants to start physical therapy right away because she wants to be able to walk. So we did. And it looks very possible that she may.
And yet, does hearing that raise the same sort of just-not-okay in your very core that it does in mine? My response was immediate, unstoppable tears.
Can you imagine what would have been possible for her had someone begun working with her a year ago? Five years, ten years ago??? Cerebral palsy, although not a progressive disease, does have progressive consequences when not addressed appropriately. Oh, what time has robbed from her!
And time.
Time.
We got her in time. Every country is different. In Bulgaria, a child's I800-A has to be submitted to the US immigration office before the child's sixteenth birthday. We made that deadline with about six months to spare. No problem.
What if we hadn't? Well, her celebration of her sixteenth birthday would have sealed her fate. At eighteen, the children age out of the government-run institutions. Although it is possible to have a five year window of a sort of grace period, once that runs out, every one of these children who is unable to make it on their own is moved to an adult mental institution.
And how, I will ask you, is ANY child who is alone in the world, no family, no friends on the "outside," going to make it in a society that has no place for disabilities? A person in a wheelchair in Bulgaria is completely dependent on the assistance of others to be able to go about their daily life. There have been enough changes in the United States over the last decades that, although there are still inequalities, it is possible for someone to live independently in a wheelchair. There are transportation options, there are housing options, there are shopping options, there are job opportunities, curb cuts at most intersections, automatic doors on many buildings, and wide enough aisles at the grocery store. Sure, there are some things you still just can't do, but you can live.
That's not an option for these children, nor for those in many other countries with a similar lack of infrastructure and a general lack of acceptance of different abilities.
The cycle is painful - at birth, the parents of any child with a disability are counseled, usually by those in the medical profession, to give up their parental rights and have their child placed in an institution. There is no future for such children, they are told. Because those children are hidden away, there is no pressing need to make the elements of daily life accessible to people like them. Because everyone believes they will never amount to anything, no one invests in them, and guess what - they never amount to anything! The professionals believe that their original determinations were validated, and so the cycle repeats and repeats and repeats.
I've heard criticisms of international adoption saying that the very existence of international adoption helps to propagate the cycle. It becomes financially beneficial to have foreigners coming in and spending money during the adoption process - hotels, souveniers, restaurants, jobs for the translators, the legal people, etc, etc. True or not, I'm still faced with the fact that while with time and external (and internal) pressure, it is possible for a society to change, there are children RIGHT NOW who do not have the luxury of waiting!! How long does it take for things to change? Ten years? Fifty years? Certainly more than 6 months.
How many more lives are being slowly thrown away as time keeps marching on?
This is one of the many good-bye photos we took before swooping up our Bogomila and driving her away to live with her forever family.
Bogomila told us that first week while we were still in Sofia that she wanted to buy a red watch to send to her roommate. A nice one, with extra batteries, since the ones she has in Bulgaria always seem to stop working. It is a very sweet gesture, but to me feels like a band-aid on the papercut of a person whose three other limbs have just been severed by a chainsaw.
Forget the paper cut! We need to stop the bleeding!!!!!!! But we can't. It's too late. We can't.
It's too late.
Matt and I were both crying over her that night after supper. Isn't there any way? She's over eighteen, she could make her own choices, right?...what if we paid her way? She could live with us until she could get her feet under her. She wouldn't be our daughter, but we could find a place for her!! Could we help her find her way to a life here? Her life is at stake!!!
But I don't believe there's anything we can do.
What are the chances of her actually getting issued a visa? And while the process of US citizenship is pretty easy for a child who is adopted by a U.S. family, it's not so simple otherwise. I don't even really have any idea what something like that would all entail.
All I know is that her time has run out. She is too old to become part of a family, and within a few years she will be placed in an adult mental institution where her physical handicap will likely render her life a very short one. In a survival of the fittest/strongest atmosphere, her intellectual capacity, sufficient as it is for every day life, is not likely going to be enough to keep her alive.
I know less about the young man on Bogomila's other side. I know that he's cheerful, easy going, and had his camera all ready for some last pictures. His speech is somewhat slurred, but the Bulgarian speakers around him don't have trouble understanding what he wants. His sweet smile is engaging and contagious...
How long does he have? Does he even have any time left?? Does he even have the paperwork that makes him eligible for adoption? I don't know.*
But I do know that there are many others who ARE ready. Who are waiting. Whose lives are slowly ticking away, every day, every hour that much closer to it being too late. That many more opportunities are being lost forever as time and nothingness strip away the potential that is locked up inside each and every one.
We spent the first few weeks after Bogomila arrived home shopping for little presents not only for her roommate, but for every other person living there. Each gift so unique - the young man in the photo above likes to read, so we found a Bulgarian copy of Around the World in Eighty Days for him. Another girl likes music, so she picked out a stuffed animal with a wind up music box inside. One younger boy got a toy car; another friend got a flash drive. These are real people! Not just faces or files, not just generic "orphans." Each one a real, unique person with the same real need to be loved and cared for that anyone else in the world has. Each one a person who has lost any chance they had of being a treasured part of a family.
I don't believe it is right for me to tell all of you reading that you need to get going and adopt a child (children??) because I do not believe there is a global Biblical command to adopt. Adoption is just one way to "care for the orphan." But it is absolutely, by far the best and most complete way to care for an orphan.
It also happens to be the way that is most invasive into the comfort of your own life.
I find it hard to believe that there isn't someone, and likely more than just one someone reading this right now who IS being directed by God to go and rescue one (or more!) of these precious human beings. (That's why I don't have to be the one to tell you to go!!) It is so easy to be oblivious to the impact of the steady march of time, oblivious to the suffering so many helpless children are going through right now, and have been going through for years when we live our comfortable lives in our comfortable routines. Are any of the reasons you have for choosing to not adopt reasons that are coming from the best interests of the child? Or all they all stemming from your own best interests?
I am painfully aware of how much fear drives the decisions of even those who call themselves God's people. Fear of the unknown, fear of being tied down, fear of not having enough money, fear of not being able to do what they want to do, fear of "scary" diagnoses, fear of what others will think, worrying about how it will affect your other kids, or your marriage, or your retirement. So counter that with this: If God is calling you to obey Him in this matter, do you really think this is anything other than the best thing for you? When it is EVER a good idea to say, "You know God, I know you're telling me to do this, but I don't think you've really thought it through, God." Do you really think that NOT obeying is going to work out? The longer I get into this obedience thing, the more I'm learning that the only thing to fear is to find yourself not walking with the best of your ability in perfect alignment with what your Lord is telling you to do.
If he's telling you to go, and if he is, you probably know it, what are you waiting for??? I'm not going to tell you you have to adopt a child. But I AM going to tell you that if you are one of God's people, then you have to be obedient to him!!
While you are waiting and wondering, "Is that really what I'm hearing from God?" they are waiting, too. Only their wait is one where every day marks a loss of what could have been, where every day is marching one day at a time closer to the point of no return when, like Bogomila's house mates, it will be too late.
 |
| One of the few "candid" photos we have of Krassimir from before he came home. |
Don't do it because of emotion, but don't NOT do it because of fear.
*Since beginning this post months ago, I have learned that only one of the other residents of Bogomila's home is young enough to be adopted. I do not know if that child is registered for adoption. But I do know that there are many, many children in Bulgaria alone who are waiting for families. If *anyone* wants to know more, there is a link to my email at the bottom of the blog.
Monday, May 22, 2017
The next day
I haven't been down to the hospital all day, as I've been busy single parenting with one five-passenger vehicle. That makes me not very mobile!
Thanks to four different friends, I was able to successfully get Grandma to her routine doctor's appointment this morning, a bag of necessities to Matt at the hospital, Bogomila and Reuben to their afternoon therapy appointments, and three of our six 4H members...and two neighbor kids to their meeting this evening. Owen made supper, and we even got some home schooling done.
Matt did not get any work done on his big deadline for Wednesday, or the handful of other projects wanting his attention.
BUT, Mira is doing progressively better. Here's a photo from this morning:
She looks SO much more relaxed, and not all red and swollen any more.
And around supper time tonight, they weaned her off of the tube, and took her off the meds they were using to sedate her, and Matt reported she did beautifully with the transition. Now she's back to the oxygen, but mostly just maintenance from what I understand from Matt.
I am here now with her, and Matt is home with the others. The hope is that with some help from friends, we'll be able to get to the morning (Krassimir) and afternoon (Bogomila and Reuben) therapy appointments that are on the normal schedule, and get Matt some solid time at his desk to work. The deadline was already a nearly hopeless task as it was; losing a day of work pretty much guarantees it won't get done. But it will be good for him to try. And although my heart is heavy leaving my eight at home, walking into Mira's room here and stroking her hair and kissing her cheek - I know this is a good place for me to be right now.
Thanks to four different friends, I was able to successfully get Grandma to her routine doctor's appointment this morning, a bag of necessities to Matt at the hospital, Bogomila and Reuben to their afternoon therapy appointments, and three of our six 4H members...and two neighbor kids to their meeting this evening. Owen made supper, and we even got some home schooling done.
Matt did not get any work done on his big deadline for Wednesday, or the handful of other projects wanting his attention.
BUT, Mira is doing progressively better. Here's a photo from this morning:
She looks SO much more relaxed, and not all red and swollen any more.
And around supper time tonight, they weaned her off of the tube, and took her off the meds they were using to sedate her, and Matt reported she did beautifully with the transition. Now she's back to the oxygen, but mostly just maintenance from what I understand from Matt.
~~~~~~~~~~~~~
I am here now with her, and Matt is home with the others. The hope is that with some help from friends, we'll be able to get to the morning (Krassimir) and afternoon (Bogomila and Reuben) therapy appointments that are on the normal schedule, and get Matt some solid time at his desk to work. The deadline was already a nearly hopeless task as it was; losing a day of work pretty much guarantees it won't get done. But it will be good for him to try. And although my heart is heavy leaving my eight at home, walking into Mira's room here and stroking her hair and kissing her cheek - I know this is a good place for me to be right now.
Sunday, May 21, 2017
Tsvetomira's in the ICU
It is very convenient living so close to good medical care. When we decided this afternoon that Mira needed to be taken to the ER, it was easy for me to pack up a bag for Matt, buckle her into the van, and send him off on the 15 minute drive to the hospital that Gillette is connected to.
The lady who admitted Mira to the emergency ward was the same woman who had been working the afternoon that we landed in the US and took Mira on her planned visit to the ER. This time they didn't even bother with a cursory stop through triage, but just sent her right to a room. Having oxygen levels in the 80s (which you are providing from your own oximeter) means you don't have to wait in the lobby.
A chest x-ray confirmed pneumonia. Her body temp was also dropping (she usually runs low, but 92 is quite low, even for her), so they went to work raising her body temp, put her on oxygen (a "3" out of "10" which means to me that there's plenty of room to go up should it become necessary) and started antibiotics right away.
Matt called me with an update, and I could hear her little moaning and labored breathing in the background. I asked to talk with her, and just told her that Mommy loved her, and that Daddy was going to stay with her so she wouldn't be alone. Matt said she definitely heard me, and was lifting her head toward the sound of my voice.
After an hour on the first antibiotic, they started a second one, and within 5 minutes things got very exciting. Matt said it was pretty impressive how many people responded very quickly when the "code red" was called. Turns out she had an allergic reactions to one of the antibiotics - they weren't sure which one - likely the second one, but just to be sure they cut both of them. Steroids and two epi-pen injections helped to calm things down, but made the emergency team decide to admit her to Gillette's ICU instead of just one of their regular wards.
Matt just sent the above picture to me, with the subject "Not happy girl."
He was happy, however, that the admitting doctor at Gillette was the same woman who had been there when Mira was admitted to Gillette for her first stay. She remembered Mira, and could hardly believe how much she has changed! She actually met them down in the ER during the code red call, and spent an hour with her and Matt there before Mira was moved up to her new room. She is currently researching which antibiotic she wants to try next, because even though the culprit is most likely the second one, Mira's reaction was sudden enough and severe enough that no one wants to risk duplicating that tonight, so neither one of those first two will be given again tonight!
They also made the decision to intubate her, more for the reaction than the pneumonia itself. But it sure makes her look like one sick girl!
Isn't the blanket they chose to give her sweet?
When we made the decision to take Mira to the ER, four of our children were gone visiting our neighbor-relative two houses down for supper. When they came home, it was interesting to see the two very different responses I got from two of our girls. One radiated peace, and the other was fretting and fussing. I know both girls care deeply about Mira, but it prompted a quick snuggle on the couch with some good reading material:
It is not pleasant to have our tiny Tsvetomira so sick and hooked up to so many machines and looking so very uncomfortable, but it is so good to not have to worry! We went into this (adopting her) knowing that it was not our job to save her life. It was our job to value her life so much that we are willing to sacrifice of our own life, time, money to make her our precious daughter - to demonstrate to her and to the world that all of mankind is worthy of love.
As much as I am so full of hopes and dreams for her and her life that is, in so many ways, just beginning, I also recognize that this could be the end for her, just like any day could be the last one for any of us.
Healing these bodies of ours here on this earth is not a primary goal for God. Yes, he can, and yes, he does, but the preservation of these temporary bodies is not the biggest deal that there is. I've thought about this in the context of the many miracles that Jesus performed while he was on this earth as a man. The lame walked! The blind could see! The sick were healed, and the dead - well, even that wasn't enough to stop Jesus - the dead were alive again!!! But, and this is a big "but," all of those miraculous things were temporary! Not a single one of the people that Jesus healed didn't have something else happen to them in the future. The ones raised back to life eventually died again. To me, it is a demonstration of his power, but also a reminder to us that this life is not all there is.
As soon as we fix our eyes on the present - on the life that we live on this earth in this aging, failing bodies, and begin to think that this is all-important, it becomes necessary to preserve life at all costs. Once we fix our eyes on Him, we can say, like Paul, that
The lady who admitted Mira to the emergency ward was the same woman who had been working the afternoon that we landed in the US and took Mira on her planned visit to the ER. This time they didn't even bother with a cursory stop through triage, but just sent her right to a room. Having oxygen levels in the 80s (which you are providing from your own oximeter) means you don't have to wait in the lobby.
A chest x-ray confirmed pneumonia. Her body temp was also dropping (she usually runs low, but 92 is quite low, even for her), so they went to work raising her body temp, put her on oxygen (a "3" out of "10" which means to me that there's plenty of room to go up should it become necessary) and started antibiotics right away.
Matt called me with an update, and I could hear her little moaning and labored breathing in the background. I asked to talk with her, and just told her that Mommy loved her, and that Daddy was going to stay with her so she wouldn't be alone. Matt said she definitely heard me, and was lifting her head toward the sound of my voice.
After an hour on the first antibiotic, they started a second one, and within 5 minutes things got very exciting. Matt said it was pretty impressive how many people responded very quickly when the "code red" was called. Turns out she had an allergic reactions to one of the antibiotics - they weren't sure which one - likely the second one, but just to be sure they cut both of them. Steroids and two epi-pen injections helped to calm things down, but made the emergency team decide to admit her to Gillette's ICU instead of just one of their regular wards.
Matt just sent the above picture to me, with the subject "Not happy girl."
He was happy, however, that the admitting doctor at Gillette was the same woman who had been there when Mira was admitted to Gillette for her first stay. She remembered Mira, and could hardly believe how much she has changed! She actually met them down in the ER during the code red call, and spent an hour with her and Matt there before Mira was moved up to her new room. She is currently researching which antibiotic she wants to try next, because even though the culprit is most likely the second one, Mira's reaction was sudden enough and severe enough that no one wants to risk duplicating that tonight, so neither one of those first two will be given again tonight!
They also made the decision to intubate her, more for the reaction than the pneumonia itself. But it sure makes her look like one sick girl!
Isn't the blanket they chose to give her sweet?
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| "I love Daddy, I love Mommy." |
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all comprehension, will guard your heart and your mind in Christ Jesus.*
It's a command and a promise. And the promise is conditional on the command. You don't obey the command, and the promise doesn't follow. Do not be anxious about anything.
As much as I am so full of hopes and dreams for her and her life that is, in so many ways, just beginning, I also recognize that this could be the end for her, just like any day could be the last one for any of us.
Healing these bodies of ours here on this earth is not a primary goal for God. Yes, he can, and yes, he does, but the preservation of these temporary bodies is not the biggest deal that there is. I've thought about this in the context of the many miracles that Jesus performed while he was on this earth as a man. The lame walked! The blind could see! The sick were healed, and the dead - well, even that wasn't enough to stop Jesus - the dead were alive again!!! But, and this is a big "but," all of those miraculous things were temporary! Not a single one of the people that Jesus healed didn't have something else happen to them in the future. The ones raised back to life eventually died again. To me, it is a demonstration of his power, but also a reminder to us that this life is not all there is.
As soon as we fix our eyes on the present - on the life that we live on this earth in this aging, failing bodies, and begin to think that this is all-important, it becomes necessary to preserve life at all costs. Once we fix our eyes on Him, we can say, like Paul, that
...for me, to live is Christ, and to die is gain.**
Fixing your eyes on Him frees you from worry. Obeying his command to not be anxious about anything means that his peace will guard my heart and my mind.
Our little Pearl is very sick, but her life is in His hands, and we will wait to see how he is going to show himself in what the next days bring.
*Philippians 4:6-7
** Philippians 1:21
Leisurely trip to the ER
Friday we started seeing a few runny noses around the house, and yesterday Mira had it, too. Like we expected, and have been told to expect, a runny nose is a much bigger deal for her than it is for the rest of us. She has so many little factors to complicate things.
We were up with her a fair amount last night, as she was coughing a lot of phlegm, and also some of her feed was coming up, too. We put her new oximeter to use, and although 94/95% is not great, it was the lowest she was going, and was often at 96 or 97. You really want to be 98 or higher. (The percentages do not give you a purely linear relationship to the amount of oxygen your body really wants. Her pulmonologist said that once you're below 95%, what your body is getting drops rather quickly.)
Today after getting home from a busy morning and early afternoon, we noticed that she still wasn't settling in, and got the oximeter out again, and were getting readings below 88, with only an occasional spike into the low 90s. So, back in the buckles she went, and she and Daddy are on their way to the ER to see what's up and what we can do for her.
I'm so glad she's here doing this with her Daddy.
Sunday, May 14, 2017
English Grammar
"Little Bobcho is driving my chair in the house."
That's a nine word sentence in English, with perfectly proper grammar! There's so much that goes into using language correctly, but look at this:
She's got the word order correct.
She's got the vocabulary correct.
She's using the right form of the verb "to be." (She uses is, and not am, or are.)
She knows to use the -ing form of the verb. (It's not is drive, or drive, but is driving.) And Gloria really was driving the chair - she just today figured out how to get it to move by handling the wheels.)
She has a properly formed prepositional phrase.
She's using the correct article. (The and not a, and she knows to use an article in the first place! It's not in house.)
Learning the language has been our biggest goal for her "academically" this school year. All of the other academic things that we hope to achieve in our time with her are going to be so much simpler to do without a language barrier.
But mostly, what we value is the ability to so much more easily connect with her, and her with us. Up until about two weeks ago, pretty much *everything* we wanted to say to her had to go through the phone, and it's amazing how much time that takes! With the other kids, I can talk with them while I'm cooking, changing diapers, folding laundry - doing any other task with my hands. With Bogomila, it's been an all-encompassing thing just to have a conversation. It requires my ears, my eyes (to look at the screen), AND my hands (both to hold the phone we use for translating and to touch back and forth between English and Bulgarian input.) Add to that the fact that the translator is less than perfect, so each statement, particularly one of any depth, has to be repeated a number of times, or corrected by hand-spelling the words, and a simple conversation now takes at least three times as long as it would with someone who shares the language, in addition to taking my ears, eyes and hands, and not just my ears.
We still use the phone for many things, but it's becoming more and more supplementary, and also does a great job translating single words. There's still a long way to go before she really knows the language well enough that it's not a barrier, but just as Mira is changing physically before our eyes almost daily, Bogomila is making noticeable gains in her language skills almost daily
These first months have been quite all-encompassing on all fronts, and to begin to see the light at the end of the tunnel even in just a few sectors is very exciting.
Thursday, May 11, 2017
Small victory
This is what Krassimir ate for lunch today:
Macaroni and cheese, potato salad*, deli turkey, and Pediasure fortified with powdered milk.
It may not look like much, but for this boy for whom eating has been such a continual challenge, and we measure our victories in bites (as in his therapist sharing with us that he took three bites of cooked carrot instead of two bites), being able to eat an entire meal of food that has not been pureed is a big deal.
After three years of working twice a week with his speech/feeding therapist, and us working with him at home, it appears that we've arrived at a new threshold. She's been regularly reporting up to twenty bites of different soft foods, and we're getting more success with a greater variety of things here at home. We still need to puree most of his meals, because we can not get a sustainable quantity into him (yet!) this way, but being able to do an entire meal here and there served right from the food the rest of us are eating at the table is incredible.
The forward progress for Krassimir is often very slow and incredibly incremental, but a simple thing like lunch today is a great reminder of how far he's come!
* Because I am a low-tech person, this whole "having a cell phone" thing that I've been doing since January still trips me up sometimes. When I put photos on the blog the old-fashioned way** by uploading them from the ones I have downloaded to my computer from my digital camera, they then exist on the blog regardless of if I move or delete them on my computer. Today I snapped a photo of Krassi's lunch, wrote a quick post this afternoon, and then promptly deleted the photo from my Google Photos because, after all, I don't need to keep a photo of Krassi's lunch, and I'm still somewhat on top of things, like sifting out photos I don't need to keep. Well, turns out you can't delete from Google Photos if you still want it to be on the blog. SO, the photo you see above is a staged photo that I took tonight when I realized the one I'd posted was gone...but I didn't have any more potato salad, so you have to imagine there is potato salad in the bowl next to the macaroni.
** Is it ridiculous to use the words "old-fashioned" and "blog" and "digital camera" in the same sentence? Maybe better not answer that.
It may not look like much, but for this boy for whom eating has been such a continual challenge, and we measure our victories in bites (as in his therapist sharing with us that he took three bites of cooked carrot instead of two bites), being able to eat an entire meal of food that has not been pureed is a big deal.
After three years of working twice a week with his speech/feeding therapist, and us working with him at home, it appears that we've arrived at a new threshold. She's been regularly reporting up to twenty bites of different soft foods, and we're getting more success with a greater variety of things here at home. We still need to puree most of his meals, because we can not get a sustainable quantity into him (yet!) this way, but being able to do an entire meal here and there served right from the food the rest of us are eating at the table is incredible.
The forward progress for Krassimir is often very slow and incredibly incremental, but a simple thing like lunch today is a great reminder of how far he's come!
* Because I am a low-tech person, this whole "having a cell phone" thing that I've been doing since January still trips me up sometimes. When I put photos on the blog the old-fashioned way** by uploading them from the ones I have downloaded to my computer from my digital camera, they then exist on the blog regardless of if I move or delete them on my computer. Today I snapped a photo of Krassi's lunch, wrote a quick post this afternoon, and then promptly deleted the photo from my Google Photos because, after all, I don't need to keep a photo of Krassi's lunch, and I'm still somewhat on top of things, like sifting out photos I don't need to keep. Well, turns out you can't delete from Google Photos if you still want it to be on the blog. SO, the photo you see above is a staged photo that I took tonight when I realized the one I'd posted was gone...but I didn't have any more potato salad, so you have to imagine there is potato salad in the bowl next to the macaroni.
** Is it ridiculous to use the words "old-fashioned" and "blog" and "digital camera" in the same sentence? Maybe better not answer that.
Wednesday, May 10, 2017
"Little Bobche" returns
Gloria takes every chance she can get to go into Bogomila's room and play with her headphones! She's decided, too, that Bogomila's remote control for her lamp looks an awful lot like an mp3 player. Today she's even got Bogomila's photo album, open to her favorite photo, open on her lap.
After lunch today, we took the "Little Bobche" thing a little further when Gloria brought a shoe over to Bogomila. Leah went running for her Captain America hat, and the look was complete. 😊
That's a big responsibility Bogomila's been given! She's got little people looking up to her!
More and more, the kids are finding chances to slip into Bogomila's room and just hang out. She still doesn't come out a lot, so it's great to have a regular flow of people going in.
After lunch today, we took the "Little Bobche" thing a little further when Gloria brought a shoe over to Bogomila. Leah went running for her Captain America hat, and the look was complete. 😊
That's a big responsibility Bogomila's been given! She's got little people looking up to her!
Tuesday, May 9, 2017
Just another day at therapy
Tuesday is our big therapy day. At 8:30 in the morning, Matt and I pack up Krassimir and Tsvetomira...and Gloria, Evania, and Rinnah (so Matt can get his work done) into Big Blue, and I make the four mile drive to the therapy center, aiming to make it into the lobby by 9:00.
Tsvetomira has one hour of physical therapy, and then we spend an hour in the waiting room giving her her morning feed, and coloring and kindergartening (Rinnah).
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| Mira appears to really enjoy her weekly physical therapy visit. She's not exactly smiling in this photo, but spends much of her time with a very attentive, contented look on her face while Lori's working with her. Here she is doing some weight bearing. |
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| Krassimir built a block tower with four blocks today!! See the pleased look on his face! |
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| Among other things, Reuben and Brian spend time every week biking. Reuben isn't very motivated, and likely will never be riding a two-wheel bike on his own, but the benefits from a PT standpoint are still great - it works his core, and gives him a great chance to improve his skills in balancing. It also encourages him to engage in many movements simultaneously - pedaling, balancing, holding on - and the ability to multi-task physically in this way has plenty of carry-over into safe navigation when he's on just his plain old two feet. Brian has a belt around Reuben's waist, and a hand (or two!) on the bike, but Reuben's doing a lot of the work himself, too. Today Owen made the four-mile bike ride to the center to watch Reuben and Bogomila's sessions. |
I arrive home from the therapy run in time to feed Mira, and most weeks Tuesday is our day to take some combination of the kids to the library. But not today.
*Later that same day*
Here's Krassi stacking up a pile of whatever he can find on the kitchen floor while I'm making supper! I suppose we can call that carryover??
Monday, May 8, 2017
Festival of Nations
A quick post, mostly in photos.
Being connected with the Bulgarian community here means Bogomila got invited to participate in the annual Festival of Nations held in downtown St. Paul (15 minutes away from our home). Their group had enough extra tickets that they were able to provide enough for everyone in our family who wanted to go. Matt and I took Bogomila, Leah, Reuben, and Rinnah in the earlier part of the day, and I went back with Leah and Owen after supper to pick Bogomila up after she helped work her shift at the Bulgarian cultural booth.
Neat exhibits:
Silly photo opportunities:
And, best of all, very very many Bulgarian people! ...and Bogomila wanted photos with any one of them who had a moment to oblige.
And, of course, good food:
Being connected with the Bulgarian community here means Bogomila got invited to participate in the annual Festival of Nations held in downtown St. Paul (15 minutes away from our home). Their group had enough extra tickets that they were able to provide enough for everyone in our family who wanted to go. Matt and I took Bogomila, Leah, Reuben, and Rinnah in the earlier part of the day, and I went back with Leah and Owen after supper to pick Bogomila up after she helped work her shift at the Bulgarian cultural booth.
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| Our Bulgarian friends met us in the lobby with our tickets...and Bulgarian clothing for Bogomila to wear! She started with just the hat, and as you can see, was delighted. |
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| Senegalese pottery |
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| South American (Peru??) weaving. |
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| German woodcarving |
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| Native American bead loom |
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| Arriving at the Bulgarian cultural booth |
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| Bogomila stamping passports at the cultural booth. |
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| And a grand finale photograph with many of the Bulgarian dancers...and a few Turkish ones, too. |
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| Eating a french donut |
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| And, just because it was amazing, a carved watermelon (and others) at the Thailand food booth. |
Friday, May 5, 2017
She's done growing...
...is what we were told when we picked her up. She had gained only a few ounces over the last two years, putting her from a few ounces under 25 pounds at 9 years old to just a few ounces over 25 pounds when we picked her up two months after her 11th birthday.
"She's done growing."
Or not.
Six weeks after coming home she had gained five pounds, and before her surgery yesterday she weighed in at 35 pounds, 11 ounces.
Yes, I know that what you weigh doesn't give the whole picture, but it does reaffirm that you can't believe all the information you receive about a child in adoption (either the "good" or the "bad"). She's not done growing.
"She's done growing."
Or not.
Six weeks after coming home she had gained five pounds, and before her surgery yesterday she weighed in at 35 pounds, 11 ounces.
Yes, I know that what you weigh doesn't give the whole picture, but it does reaffirm that you can't believe all the information you receive about a child in adoption (either the "good" or the "bad"). She's not done growing.
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| Mira, recovering after her dental surgery, just before we packed up to go home. |
Thursday, May 4, 2017
Dental Surgery
Ah ha! After an entire morning of a fickle computer, I've made one last attempt here to sign in to blogger...and it worked! If you're reading this post and it's before supper time on Thursday it means it kept going until I was done writing. ;)
I am sitting here with Mira post-dental-surgery. She's doing great, but I'm still just not quite ready to try moving her to dress her in her going home clothes.
Sadly, I don't have great "before" pictures, but I'll share what I have:
Ouch. The amount of pain she must be in every day from that mouth is more than I really want to think about.
We've been planning for this surgery since the day after she was discharged from the hospital after coming home to the States. (Well, honestly, we'd been planning it since we met her last September, but the day after discharge was the day it went officially into the schedule!) The big question in our mind has been, "What's going to be left? And what are we going to do about it?" So I asked the surgeon when he came in this morning before surgery. His answer, "I don't know."
You've got to love an honest doctor!
It was wonderful to have him come in to talk after the surgery and say that he only ended up having to pull eleven teeth!! All of her six-year molars are still intact, and best of all, he was able to save the two top front teeth and the little ones on the bottom! It required a pretty substantial cleaning and filling - he said her front right tooth - the dark one - looked like it was all set for a piercing with a big hole in the middle of it! - but the decay had not hit the nerve, so he's pretty confident that what he was able to do will save the tooth. Mira obviously does not need her teeth for eating, but there's nothing like teeth inside a smile to make it look finished.
After photos will come in a few days. Right now she still doesn't look all that great, but the doctor's opinion is that even today she may already feel *better* because the net gain of having the rotting teeth out will more than make up for the pain of the extractions.
We are so grateful that our friend Lindsay just "happened" to email us a few weeks ago asking if she could be of any help this weekend! Knowing that she's at home with the other kids and Matt's able to make it to his meeting this afternoon is wonderful.
I am sitting here with Mira post-dental-surgery. She's doing great, but I'm still just not quite ready to try moving her to dress her in her going home clothes.
Sadly, I don't have great "before" pictures, but I'll share what I have:
Ouch. The amount of pain she must be in every day from that mouth is more than I really want to think about.
We've been planning for this surgery since the day after she was discharged from the hospital after coming home to the States. (Well, honestly, we'd been planning it since we met her last September, but the day after discharge was the day it went officially into the schedule!) The big question in our mind has been, "What's going to be left? And what are we going to do about it?" So I asked the surgeon when he came in this morning before surgery. His answer, "I don't know."
You've got to love an honest doctor!
It was wonderful to have him come in to talk after the surgery and say that he only ended up having to pull eleven teeth!! All of her six-year molars are still intact, and best of all, he was able to save the two top front teeth and the little ones on the bottom! It required a pretty substantial cleaning and filling - he said her front right tooth - the dark one - looked like it was all set for a piercing with a big hole in the middle of it! - but the decay had not hit the nerve, so he's pretty confident that what he was able to do will save the tooth. Mira obviously does not need her teeth for eating, but there's nothing like teeth inside a smile to make it look finished.
After photos will come in a few days. Right now she still doesn't look all that great, but the doctor's opinion is that even today she may already feel *better* because the net gain of having the rotting teeth out will more than make up for the pain of the extractions.
We are so grateful that our friend Lindsay just "happened" to email us a few weeks ago asking if she could be of any help this weekend! Knowing that she's at home with the other kids and Matt's able to make it to his meeting this afternoon is wonderful.
Tuesday, May 2, 2017
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