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....


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:

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.


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.


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!


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!

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,


Tuesday, May 17, 2011

Dear "Jacob/Henry"

Dear Jacob/Henry,

There are so many things I want you to know, so many things I had planned on teaching you, so many things I had planned on doing with you. First of all, I want you to know that you are loved, as you are, for who you are. God made you perfect, just the way you are, and we love you so much, just as you are. I am so sorry that I will never be able to hold you, to kiss you and hug you, to cuddle you and have you sleep in my arms, content with a full belly and an even fuller heart. I long for the first time you would have been able to really smile AT ME, to look into my eyes and let me know that you know you are loved. I so looked forward to the day of bringing you home, of introducing you first to your Eastern European brother, and finally to all of your brothers and sisters, who so looked forward to having you home with them. We have your bed, set up in our room, ready for you. Your big brothers have argued with me that you should be in their room with them, not in mom and dad's room! Your sisters have been busy picking toys and clothes. Your teachers and principal next year have been asking many questions about your, when will you be home, when will i be bringing you in for a visit, when can they first start to teach you?? Even the neighbors have been asking, anxiously awaiting your arrival to our family, knowing full well that you are in our family already.

Then the news came last Friday, the 13Th. I've never been superstitious, and I'm not going to start now, but still...

Shelley had the difficult task of telling me that you are now home with Jesus.
It is hard to be happy for you, when I'm so sad for me, and for all of us. But, I'm trying, I really am.

I am sorry for you, too, though. I'm SO SORRY that we were not there earlier for you. I'm SO SORRY that you lived in a place for more than 5 long years that was not "home". I'm SO SORRY that you were not able to experience a mama's cuddles, kisses on your cheek and forehead, a papa's scruffy beard on your face or a "Jacob/Henry Sandwich", with mama and papa as the bread and you as the filling. I'm SORRY that it has taken us so long from the time that we committed to bringing you into our family, that you literally could not wait that long. I'm SORRY you won't know Noodle the Doodle (our dog) licking you, or waiting for you to throw the ball so she could go get it. I'm SORRY you won't ever hear your new name, lovingly picked just for you, debated over and over again by all members of the family. I'm SORRY you won't be here for our fantastically overstimulating family Thanksgiving, Christmas, Easter, Memorial Day, Labor Day, 4th of July, and birthday parties, with many aunts and uncles and cousins. I'm SORRY you spent so many days cold, hungry, alone in a crib, without a mother's love and attention.

My dear, darling Jacob/Henry, I rejoice that you are now at peace, and I pray that Our Blessed Mother gathers you into her arms and you will then know what I have longed to give you, that I cannot now. Be free, Jacob/Henry. Run, jump, and play, eat, eat, and eat more until you have your fill, and know that your waiting is over! Now it is the rest of us that must endure the wait until we can see you in Heaven!

We all love you, son. And always will.


Monday, May 16, 2011

No time for anything....

Time is up.
Our dossier is in Jacob/Henry and "Matt's" country, has been translated and is being authenticated. If we would like to adopt two children, on this adoption trip, and not delay "Matt's" adoption process, time is up for us to decide upon another child.
Saying "yes" to one means saying "no" to many others. And we just had a huge "NO" given to Jacob/Henry.
We anticipate making that decision very soon, possibly tonight, so that if we do decide to adopt another child with Matt, we can get the paperwork there for submission without delay.

Questions still abound, and more than likely we will not know the answers, ever. It doesn't stop them from coming.

In other news.....
Joey has officially been diagnosed with precocious puberty (age 10) and will begin treatment for that soon.

Jacob (our Serbian son, the reason "Jacob/Henry" cannot be "Jacob") is working through medications to help his self abusive behavior.

Never a dull moment around here.


Saturday, May 14, 2011


The past day and a half have been rough. Lots of tears, lots of "what if's", but also lots of prayers. It's hard to grieve a child you have never met. Typically in grieving, we remember some good times, some lovely warm memory. But when you don't have that, it is so different. So hard.

With permission from the author, Meredith Cornish, I offer these thoughts:

While we were eating…
… they were hungry
While we were playing…
… they were restrained
While we were tucking our kids into bed…
… they were alone
While we turned up the heat…
… they laid in the icy cold
While we wrapped our children in blanket sleepers…
… they laid in their own excrement
While we sang songs and listened to music…
… they listened to the screams and cries of those around them
While we rocked our babies…
… they silently rocked themselves
While we hugged our kids…
… they scratched at their own faces and pulled their own hair for stimulation
While we cried over scraped knees…
… they moaned in their loneliness
While we brushed our daughters’ beautiful hair…
… they had their heads shaven to stave off the lice
While we fought off the flu with love and nourishment…
… they got the flu and went Home.
No longer suffering… but so many more still are.
In memory of those that have never felt the love of a family, but have passed away alone.

By: Meredith Cornish

And I dedicate this to our little angel, "Jacob/Henry".


Friday, May 13, 2011

Mother's Day

No, today is not Mother's Day. That was Sunday. Moms: What were you doing on Mother's Day this year? Mother's Day 2011 will always be bittersweet to me. I had my kids here, and that was great. I got a wonderful book that each one "signed" with a special personal message. I missed my mom, but know she is a much better place and can rejoice that I had the privilege of caring for her for the last 20 years of her life.
I got to pick dinner, and my wonderful husband cooked it (which, I'm happy to say, is the norm around here...he does the vast majority of the cooking). I went to church, the kids were pretty good, and it was First Communion Mass. I love going to First Communion Mass.
And I eagerly anticipated hearing sometime the next week that our dossier was submitted, we had our confirmation and could travel with a few weeks to meet our newest boys. Yes, Mother's Day 2011 WAS a great day while I was experiencing it.

We got a call this morning. I was so excited when the call came in. NOW, I will find out when we can travel.

It wasn't THAT call. Instead, I was tearfully informed that just 2 days before Mother's Day 2011, a mother's worst nightmare occurred, and I did not even know, and I could not even do anything.

Our "Jacob" passed away. The words were numb in my ear, in my head.

Today we mourn our child, who never knew us. I think that is the hardest. If he had come home, been loved, fed, tickled, hugged, and then died, well, at least I would know he knew a family's love. But life cheated him.

I am not eloquent in writing. I tend to ramble. But Jim is great and has expressed it very well....read it here....www.apapastory.blogspot.com
And a dear, dear friend of mine, also much more eloquent than I, shared her feelings: http://martiniadoptionroad.blogspot.com/

I can't add anything to these.