We are searching the internet for some translation phrases that we can begin to learn for our trip. We do have enough residual Russian and Ukrainian to help us get through, but learning a some key words in the local dialect is not only useful, but also respectful.
The main idea is "key".
One page had some "useful" phrases translated.
One such "useful" phrase was "My hovercraft is full of eels".
Still trying to picture the appropriate time to use THAT one!
Better order the CD of "helpful parent phrases".
Mary
Tuesday, June 7, 2011
Monday, June 6, 2011
Flights? Check!
We are going to Eastern Europe!
Got the flights booked.
Making arrangements for camp for the kiddos here.
Notified work responsibilities of need for days off.
One step closer!
Mary
Got the flights booked.
Making arrangements for camp for the kiddos here.
Notified work responsibilities of need for days off.
One step closer!
Mary
Friday, June 3, 2011
More Medical Updates on Jacob/Henry
We received more information about the circumstances surrounding Jacob/Henry's death. I postulated earlier that a cause may have been refeeding syndrome, based on the information I was given at first. With the additional information we now have, it appears that this is not the case, but they were trying to treat him for severe malnutrition when he died.
It seems they performed surgery, and from what I can gather, his esophagus was narrowed. This is probably why they were performing surgery, to widen this. They did put a "tube" in, I assume a "g-tube" or a tube that goes straight into his stomach through which formula can be given, bypassing the esophagus.
An incision got infected, I believe from the report, peritonitis set in, and that was a major factor in his death.
It does not appear as if they ever got enough food into him to trigger a refeeding syndrome reaction, but they were treating him.
I did find out where he is buried and we plan on visiting his grave while we are in the country.
Mary
It seems they performed surgery, and from what I can gather, his esophagus was narrowed. This is probably why they were performing surgery, to widen this. They did put a "tube" in, I assume a "g-tube" or a tube that goes straight into his stomach through which formula can be given, bypassing the esophagus.
An incision got infected, I believe from the report, peritonitis set in, and that was a major factor in his death.
It does not appear as if they ever got enough food into him to trigger a refeeding syndrome reaction, but they were treating him.
I did find out where he is buried and we plan on visiting his grave while we are in the country.
Mary
TRAVEL!
YIPEE! We got our travel dates. We visit one of our new sons from July 18-22, and the other from July 25-29.
So, now, Jim gets to work his magic and find us the best airfare.
YIPEE!
Mary
So, now, Jim gets to work his magic and find us the best airfare.
YIPEE!
Mary
Tuesday, May 31, 2011
Additional Information
More information is trickling in and I wanted to pass it along here. I am so grateful to a complete stranger at an NGO in EE for tracking down information on Jacob/Henry and providing it to me. I continue to share it here in the hopes that some day, some where, it could help another child to live, and other families to continue to ask and get more information to help ensure the health of their children.
From the latest report, which included phone interviews with the EE doctors and a German specialist (I told you, this NGO is going way above and beyond to get me information), Jacob/Henry probably had esophageal strictures, and he had a problem with aspirating fluids. He should have had surgery shortly after birth. I don't know for how long this was known, so I will assume that it was not known (the strictures). When they did surgery to widen his esophagus, more problems developed, which is certainly a risk anywhere. One incision infected (noted in our report probably due to conditions in the hospital) and from there, everything went down hill.
What this points out to me, personally, in a very real way, is that information, specific medical information, needs to be shared with the medical profession in all EE countries. An attitude shift is underway, I'm sure slow in growing, but it is happening. But the medical advances we enjoy here need to be shared so needless deaths do not occur.
Stay tuned....
Mary
From the latest report, which included phone interviews with the EE doctors and a German specialist (I told you, this NGO is going way above and beyond to get me information), Jacob/Henry probably had esophageal strictures, and he had a problem with aspirating fluids. He should have had surgery shortly after birth. I don't know for how long this was known, so I will assume that it was not known (the strictures). When they did surgery to widen his esophagus, more problems developed, which is certainly a risk anywhere. One incision infected (noted in our report probably due to conditions in the hospital) and from there, everything went down hill.
What this points out to me, personally, in a very real way, is that information, specific medical information, needs to be shared with the medical profession in all EE countries. An attitude shift is underway, I'm sure slow in growing, but it is happening. But the medical advances we enjoy here need to be shared so needless deaths do not occur.
Stay tuned....
Mary
Monday, May 30, 2011
What Happened to "Jacob/Henry"
Two posts in one evening!
After Jacob/Henry died, I was online looking for some answers, and I honestly can't remember how or where I found some NGO that works in his EE country. I emailed them about him, and they got back to me right away with some information, mostly about equipment (wheelchairs and the like) that can be rented for children in orphanages and institutions. They also said they would see if they could find out any information about his death.
Today, got another email from them:
After Jacob/Henry died, I was online looking for some answers, and I honestly can't remember how or where I found some NGO that works in his EE country. I emailed them about him, and they got back to me right away with some information, mostly about equipment (wheelchairs and the like) that can be rented for children in orphanages and institutions. They also said they would see if they could find out any information about his death.
Today, got another email from them:
Dear Mary,
As I asked the State Agency for Child Protection to inform me about the reasons for the death of Jacob/Henry they performed a check and replied to me two days ago. Currently the Agency implements a big project for deinstitutionalisation of the all children with disabilities from the instititutions. The needs assessment of all children was implemented in October 2010 and for certain children special measures were taken as they were at risk to die.
So the assessment estimated that Jacob/Henry is at risk and special menu and supervision was prescribed for him. There were obviously problems with the feeding of this child as he was hospitlised at Christmas 2010 for pneumonia which often happens with the bedridden children because they are not fed properly and food enters the lungs and stays there as they do not move. But in April 2011 Jacob/Henry was hospitalised because some stomach problems were diagnosed and the medical doctors decided to operate him. After the operation they started feeding him with a tube and not through the mouth. According to the documents air entered the stomach and this worsened the condition of the child and he died on 5 May 2011 at midnight. The official reason for the death is brain and lungs swelling as well as pneumonia. The informed consent for the operation was taken from the father of the child. So after the father was informed about the death he did not want to arrange the funeral himself and the municipality arranged it. The funeral took place in the city graveyard in (Jacob/Henry's city of residence).
According to the Agency a course for feeding and intensive interaction took place in the institution in April 2011 and Jacob/Henry was included in the list of the children who would be fed in a special way but the real work with him did not start as he was hospitalised.
From what I can gather from this, it seems that Jacob/Henry probably died from "refeeding" syndrome.
Now I'm on a mission.
Refeeding syndrome can occur when a person goes through a period of starvation...the period can be as short as 5 days...or as long as...well, I don't even want to go there.
Many changes happen in the body when it is starved, and reversing these changes must be done very carefully, slowly, and while watching fluid and electrolyte balances.
One of these days, I'll really learn how to embed links but until then, google "refeeding syndrome" for more information, and also see www.carringtonscourage.blogspot.com for another little one who went through this...only her outcome, thankfully, was much better. However, Ms. Carrington came dangerously close to Jacob/Henry's fate.
While waiting to travel, I am going to gather as much data as I can about refeeding syndrome, its causes, prevention and treatment, and hopefully will have a chance to share this information with the appropriate people so that this tragedy can be avoided in the future.
Mary
Support Changes
Change is difficult. Growing pains are real. I know this, but it does not make it any easier to deal with.
For many years, since at least 1999, I have been active with Yahoogroups. I love the group idea. I am an owner of a couple of (inactive) groups, and a member of many, many more (too many) very active groups. I can and do moderate my membership in each of my groups depending upon what is going on in my life at the time, how much time I have to spend on the computer, and how much support I feel I need in any given area of my life. For me, they have been a lifesaver. I get wonderful ideas for handling difficulties, and have made a few real life friends. Right now, I have emails from groups about homeschooling, Catholic homeschooling, homeschooling children with Down syndrome, attachment difficulties, and I USED to have one for ReecesRainbow, both preadoption (since we are adopting again) and post adoption (since we have adopted through RR) . To say that these have been my lifeline (after my husband) is not an over exaggeration at all.
Last week an important announcement came through the RR yahoogroup. The group was closing, effective Friday, and everyone had to "move" to a "board" format. I signed up for the board, I've navigated around it, and I have heard that I can even sign up for all messages to be delivered to my email box. I signed up for that a few hours ago, but thus far, nothing.
I posted two comments about not caring for the format, but I don't think I need to belabor the point. I don't need to be 'convinced" how much better one format is over another. I like what I like, and don't like change.
Now, I know I should change what I can, and what I can't I can either live with or move on. The format of the support offered is not up to me; that decision is above my pay grade. And, after this, I won't whine any more about it, here. But, it is my blog and I figure I am entitled to one post about how much I don't like the change.
In the end it is up to me to either adapt to the change or move on. I really already miss the support I've received through the years. Change, indeed, is difficult.
Mary
For many years, since at least 1999, I have been active with Yahoogroups. I love the group idea. I am an owner of a couple of (inactive) groups, and a member of many, many more (too many) very active groups. I can and do moderate my membership in each of my groups depending upon what is going on in my life at the time, how much time I have to spend on the computer, and how much support I feel I need in any given area of my life. For me, they have been a lifesaver. I get wonderful ideas for handling difficulties, and have made a few real life friends. Right now, I have emails from groups about homeschooling, Catholic homeschooling, homeschooling children with Down syndrome, attachment difficulties, and I USED to have one for ReecesRainbow, both preadoption (since we are adopting again) and post adoption (since we have adopted through RR) . To say that these have been my lifeline (after my husband) is not an over exaggeration at all.
Last week an important announcement came through the RR yahoogroup. The group was closing, effective Friday, and everyone had to "move" to a "board" format. I signed up for the board, I've navigated around it, and I have heard that I can even sign up for all messages to be delivered to my email box. I signed up for that a few hours ago, but thus far, nothing.
I posted two comments about not caring for the format, but I don't think I need to belabor the point. I don't need to be 'convinced" how much better one format is over another. I like what I like, and don't like change.
Now, I know I should change what I can, and what I can't I can either live with or move on. The format of the support offered is not up to me; that decision is above my pay grade. And, after this, I won't whine any more about it, here. But, it is my blog and I figure I am entitled to one post about how much I don't like the change.
In the end it is up to me to either adapt to the change or move on. I really already miss the support I've received through the years. Change, indeed, is difficult.
Mary
Friday, May 27, 2011
Unique Opportunity and Life Update
Yesterday, I had a wonderful, unique opportunity when John McGee of "Gentle Teaching" fame visited our sons' school, and a special visit was made to observe and give input on Jacob's SIB (Self Injurious Behavior) and aggression. I was graciously invited to observe/participate and it was such a great insight building experience.
I'll back up some. Jacob, DS, age 11 was adopted a year and a half ago from Serbia where he spent the majority of his life in Kulina, a particularly horrible mental institution. He has ongoing behavioral challenges that include SIB, and aggression. We have been trying many things to manage this, including medication, psychological interventions, Sensory Integration intervention, bonding techniques, just everything we can come up with. We know his aggression and SIB increases when his stomach is feeling bad, and I have been hounding our GI department for over a year, with minimal success on that front. His negative behavior serves many purposes for him, so each purpose needs to be addressed. Last week was a particularly difficult week with medications not being correct, and he ended up on the psych unit of our local Children's Hospital over the weekend. His SIB right now is biting himself (He usually leaves bruises, sometimes breaks the skin) on the arm/shoulders, and pinching, hard, along his jaw/neck and arms. These frequently break the skin and almost always leave bruises. HIs aggression looks the same, with some added kicks thrown in.
During his hospital stay, his medication was adjusted, more sensory integration was started and he came home.
The assistant principal from the school called me yesterday to tell me that Mr McGee was scheduled to be at the school until noon, and that they wanted to have him meet with Jacob, Matt and Joey. I asked if I could also attend and of course, I was welcomed. Mr. McGee was a wonderful teacher, and demonstrated a gentle, loving touch to use with Jacob, emphasizing 100's of hugs a day (He kept saying "100 hugs, at least, per day...do these all day long) Now, his hugs include a gentle caress of Jacob's hand while quietly saying "good boy". His technique is very unique, and I would encourage anyone with a child with difficult behavior to explore his website. I think I am going to order some of his DVDs. We know these behaviors took years to come about and they will be years in extinguishing, but his respectful way seems to make sense to me.
The fact that this technique, complete with the personal meeting of Mr. McGee, was brought to us on the very day that we received the additional photos, the video and brief status update of "Derrick" was not a coincidence. In the status update there was a line that indicated that Derrick, too, can be aggressive and self-injurious. I think I will learn more of these techniques in our waiting time!
Mary
I'll back up some. Jacob, DS, age 11 was adopted a year and a half ago from Serbia where he spent the majority of his life in Kulina, a particularly horrible mental institution. He has ongoing behavioral challenges that include SIB, and aggression. We have been trying many things to manage this, including medication, psychological interventions, Sensory Integration intervention, bonding techniques, just everything we can come up with. We know his aggression and SIB increases when his stomach is feeling bad, and I have been hounding our GI department for over a year, with minimal success on that front. His negative behavior serves many purposes for him, so each purpose needs to be addressed. Last week was a particularly difficult week with medications not being correct, and he ended up on the psych unit of our local Children's Hospital over the weekend. His SIB right now is biting himself (He usually leaves bruises, sometimes breaks the skin) on the arm/shoulders, and pinching, hard, along his jaw/neck and arms. These frequently break the skin and almost always leave bruises. HIs aggression looks the same, with some added kicks thrown in.
During his hospital stay, his medication was adjusted, more sensory integration was started and he came home.
The assistant principal from the school called me yesterday to tell me that Mr McGee was scheduled to be at the school until noon, and that they wanted to have him meet with Jacob, Matt and Joey. I asked if I could also attend and of course, I was welcomed. Mr. McGee was a wonderful teacher, and demonstrated a gentle, loving touch to use with Jacob, emphasizing 100's of hugs a day (He kept saying "100 hugs, at least, per day...do these all day long) Now, his hugs include a gentle caress of Jacob's hand while quietly saying "good boy". His technique is very unique, and I would encourage anyone with a child with difficult behavior to explore his website. I think I am going to order some of his DVDs. We know these behaviors took years to come about and they will be years in extinguishing, but his respectful way seems to make sense to me.
The fact that this technique, complete with the personal meeting of Mr. McGee, was brought to us on the very day that we received the additional photos, the video and brief status update of "Derrick" was not a coincidence. In the status update there was a line that indicated that Derrick, too, can be aggressive and self-injurious. I think I will learn more of these techniques in our waiting time!
Mary
Video and Pictures
More to come this evening, I hope, but in the mean time, enjoy these ADORABLE photos and the video of Derrick we were blessed to receive yesterday. I can't wait to get my hands on this guy!
Mary
Mary
Wednesday, May 18, 2011
More "Paper Babies"
Jim has gone to Columbus to apostille another request to our chosen EE country. We are requesting permission to adopt "Matt" and "Derrick". I would post a photo of Derrick, but I don't know how, so that will have to wait until Jim is back from Columbus!
Deciding to proceed with the adoption of another child in addition to "Matt" was not too difficult. The very difficult part was deciding which child. As we reviewed all of the children available to us, saying "I like him" (we are staying with only boys) seemed to be saying "I don't like HIM" to another child. And, I don't like the feeling of "replacing" Jacob/Henry with a different child.
But, we are ready to turn Jacob/Henry's tragic death into a blessing for someone else. And Derrick is the child we have chosen.
More soon,
Mary
Deciding to proceed with the adoption of another child in addition to "Matt" was not too difficult. The very difficult part was deciding which child. As we reviewed all of the children available to us, saying "I like him" (we are staying with only boys) seemed to be saying "I don't like HIM" to another child. And, I don't like the feeling of "replacing" Jacob/Henry with a different child.
But, we are ready to turn Jacob/Henry's tragic death into a blessing for someone else. And Derrick is the child we have chosen.
More soon,
Mary
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