A Great Weekend

Date night was AWESOME! It was so nice, and to be honest, very strange to be out without children. I took Kevin HERE and it was really cool. The food was incredible and the show was great!

Yesterday we spent the whole day together as a family. We looked at 8 houses and realized that apparently no one cares about their homes like we do. So many of them were filthy and in disrepair. I just don't get it. Most of them didn't have great yards, either. We are so spoiled where we live right now. It made me want to find a way to make our totally unaccessible, raised ranch accessible for M as she grows and nix the idea of moving altogether.

When we got home we got the kids in their swimsuits and spent some time in the pool. I even waterproofed M's central line site with multiple layers of Tegaderm and Aquagard and put her in the little floating boat we bought her. It took some finagling to get her propped up comfortably, but once she was in there, she loved it. She moved and kicked her legs so smoothly and easily under the water. I definitely think we'll be spending some time at "water therapy" - it has to feel great on her joints and muscles. We played outside a bit, grilled out and had a great Sunday evening.

Keeping it All Together

It is a well known fact that, on average, 50% of marriages these days end in divorce. That is a HUGE number, I think. It is, however, a little known fact that 85-90% of marriages involving the raising of a child with special needs end in divorce. 85-90%! That statistic is staggering! We've been told in the past related to surviving infertility and making it through difficult/lengthy adoption processes – “this will make or break your marriage.” We’ve survived both-quite gracefully I might add! I guess I never gave much thought to it with regards to raising our children.

People ask us all the time how we do it. We don’t really ever have a good answer. It is life – our life – that we chose – we just do it. We don’t really know anything different. I can see, though (hindsight is always 20/20), that it HAS changed our marriage. I can’t say that it has damaged it, ruined it, made it unhealthy or unhappy; it has just made it.........different. I realized recently that the last time Kevin and I spent any time alone together was on our flight to New Orleans on October 31, 2009, to adopt M. Yes, it is true – that was the last time! This is due in part to the needs of our children (having one hospitalized for 10 straight weeks didn’t help), in part to lack of finances, in part to being just plain too exhausted, and in part the difficulty of arranging care for a child with multiple medical needs. It’s not that I don’t trust people; it’s that people don’t get how significant M’s needs are. They look at her and see that she’s cute, she’s chubby, she smiles, she sleeps, she eats, she poops, typical baby, right? They don’t understand that she could have a shunt failure at any moment, that she could be exposed to an illness that a “healthy” child could fight off but would land her in the hospital, that pulling her arm or leg the wrong way to dress her or lift her up could pop it out of it’s socket because her joints are so loose or cause her great pain because her muscles are tight. They don’t understand that losing a couple drops of her medication could mean that she spirals into a pattern of seizures that we can’t get controlled, or that her vision impairment makes changes to her environment much scarier than for sighted children. It is exhausting to try and “prove” to others that she has significant needs; that they can’t “blow off” what I’m saying as me being an overprotective mother or a worry wart.


It is not that we don’t love each other, that we don’t enjoy each other’s company, it’s just that “we” has taken on a whole new meaning. I don’t really like to use the word “sacrifice”. That insinuates that I feel we’re missing out on something and I really don’t feel that way. We don’t vacation, we don’t eat out, we don’t buy new clothes, we don’t drive new cars and I’m okay with all of that. I don’t need any of those things. What I NEED is for my family to be happy and as healthy as possible. M’s new medication has really brought her out of herself. She interacts, is smiling and is laughing. Those moments make the hours I spend on the phone fighting for coverage for equipment and medications all worthwhile. Just last night I said to Kevin, “I honestly don’t care how things end up as long as she is able to find happiness in her own way.” That doesn’t mean I’m going to stop fighting for her or looking for treatments to improve her life and health. It just means that there is nothing more important than happiness and joy.

I realize that goes for me and Kevin, too. Without our health, happiness and mental stability, we are not going to be able to continue to give 100% to our family. We are obviously still struggling a bit to find the balance. That said, we are….get this….going on a date!! Yup – I made the decision last week that one night out alone together would be a very good investment. I can’t give you any details because it’s a surprise for my darling husband, but I have no doubt it will be a great evening!

Meet our new friend........

SABRIL





Under normal circum-stances I am NOT one to count my proverbial chickens... you know how it goes. I will admit, I am one who traditionally worries about the 'what ifs'. That said, today was a VERY GOOD DAY! We deserve to celebrate it! For the last two days, her clusters of spasms have been better. She is still having them, but they are nearly undetectable - to the untrained eye, that is. She has been...get this...awake, alert, SMILING, squealing and today, in like five minutes time, she learned how to eat! Yup - you heard it folks - she is EATING FOOD before her first birthday!!
(No, she is not feeding herself, but likes to play with the spoon while she eats). She is also sitting up in this chair with only the aid of a seat belt, tray and a couple towel rolls. THAT is amazing in itself!!


We had an awesome eval with an actual, real live rehabilitation physician who was incredible! She is getting us hooked up with absolutely everything we could ever need. For starters, M is sporting a "Johnny Cool" (yes, that IS it's real name) thumb splint - VERY stylish. Amazingly, her little hand is open and relaxed, not clutched into a tight, painful, little ball. The clonus in her left leg is a little worse and she is now showing it in her right leg as well. Previously her entire right side appeared unaffected. For now, because of her small size, we're holding off on braces, but they will most likely come down the road. We are going to up her stretching and PT to try and keep her a little looser.

To top it all off, she has been sleeping - ALL NIGHT LONG!!!!

I know to the mom with an "average" child, these things seem trivial, but to me - they are incredible miracles!!

We're praying we continue to see improvement or at least stability for a while.

I just bounced back to read THIS. As I said back then: BRING IT!!!!!

Two years....

...that you've been waiting

...and we've been trying

...that you've been suffering

...and we've been hoping

...that you've been alone

...that we've been praying


Happy birthday, sweet girl. Thank you for being strong. Thank you for being patient. Thank you for keeping your spirit in spite of your circumstance. I hope one day that you will feel the love of our family. I hope that you will look back and realize that even when you were all alone, we never stopped thinking of you and fighting for you.


Your brother (with a little help from Mommy) made you a wonderful purple cake. Hopefully next year you can be here to celebrate.

We'll never give up on you!

Comic Relief

People are forever asking us how we do it, how we hold it all together, how we stay so laid back and optimistic in light of our......challenges. Here's how and why:



Yup - found him up on the kitchen table one particularly stormy day "practicing" for a tornado.







Working out is hard to do, but she always does it with a smile/grimace on her face





































Ready for take off, Daddy



































True love



































So, so tired.......





































Such a great "daddy". (Yes, he's back in the patch :( )

Our Shortest Hospital Stay Ever

At 9:00 this morning we checked in to the hospital for what was supposed to be a 48-72 hour video EEG in hopes of finally naming the the type of seizures M has been having. Her seizures have become more frequent and more severe in the past several weeks despite new medications and increased doses. She got "wired" by 10:30 and at 12:15 they came in to disconnect her as they had "plenty of information." When there are enough events to provide "plenty of information" in less than 2 hours, it certainly can't be good news. We were discharged and sent back to the clinic where the dreaded Sabril starter packet was waiting on the table in the exam room.

What our hope was, was that M has been having myoclonic jerks. What she is indeed having are literally hundreds of Infantile Spasms per day. Basically, there are two options - don't treat and wait for them to resolve knowing that with each one, she is suffering additional damage to her already severely compromised brain function; or treat them with Sabril which carries great risks of its own. We opted to treat them. Approximately 1 out of 8 of the children our Neurologist has treated has not responded. Hopefully M is one of the lucky 7.

There is A LOT involved with starting this medication, a lot of waivers to sign, monitoring to be done. IF it works, we can expect to see results in as little as a week. Dr. D says that when it works really well, these kiddos just suddenly "wake up" and "come alive." We're praying for that outcome.

The very unfortunate side of this is what lies ahead. Because of the extent of M's brain injury combined with complications of prematurity and underlying seizures, she is at extremely high risk of developing Lennox-Gastaut Syndrome down the road. We can't think about that just yet, but it's hard to ignore once the knowledge is there.

Just words

Today we had some very important (and long awaited) appointments. Here are phrases a parent hopes to never hear from her child's doctors:

spastic cerebral palsy
....we'll have to wait and see
grossly deformed brain
....we'll have to wait and see
significant brain damage
....we'll have to wait and see
extensive encephalomalacia
....we'll have to wait and see
significant visual impairment
....we'll have to wait and see
will never walk
....we'll have to wait and see
may never talk
....we'll have to wait and see
severe global delays
...we'll have to wait and see
low cognitive ability
and yup...you guessed it....we'll have to wait and see

...and that's not even all of them.

At some point, one just shuts down and realizes they are only words. Our neurologist asked me if I was "one of those parents" who wanted her to paint a fluffy, optimistic picture. I told her I was the polar opposite of fluffy - I wanted it straight and scientific. That's what she gave me, and I appreciate that. What I know is that the only solid truths we have right now are that:

1. her hydrocephalus is currently stable
2. there is permanent damage - we already knew that
3. we'll have to wait and see - we already knew that, too

To quote one of my favorite geniuses:

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!" — Dr. Seuss

So, we move on to the next phase of this journey - fighting like hell. There is nothing we will not do for our kids. We will go to whatever lengths necessary to ensure M has every resource available to her.

BRING IT!!

The Numbers are in.....

....and they are frightening! My total cholesterol is 235, triglycerides 129, HDL 38, and LDL 171. I'm a walking time bomb just waiting for a heart attack or stroke! What's going to make me happier than anything is watching these numbers go down.

A New Ticker

It's called accountability (or public humiliation depending on who you talk to). In any case it's probably the only thing that's going to help remind my fat butt to stick with the program. There's a new ticker at the bottom of the page. Yup, just like a few million other Americans, I am F.A.T!! It is time to grow up, face facts and get myself healthy again - for myself, my husband and my kids. All the excuses have kind of fallen flat - I can't blame fertility treatments (2006) anymore or my "recent" (2008) hysterectomy. I've not carried and given birth to any children so there goes that excuse. I just plain love to eat and just plain have to get over myself. I've been at it for about a month (on again, off again - as is typical for beginning anything) and have managed to already shed a few. It's amazing how good you feel when you start getting rid of the sugar and processed crap we stuff ourselves with. I've got a looooong way to go so help push me blog buddies!

IT happened....

...and I really wasn't prepared for it. M and I stopped at the pharmacy yesterday to pick up a couple of her prescriptions. As is usual, they goofed in getting them ready and we had to wait (for like THIRTY MINUTES) so they could fix them. We took a seat in the tiny, little corner of four chairs. Moments after we sat down, a little old man came to the pharmacy with who I presume was his son. They glanced in our direction, the son smiled. The little old man did not. They requested their prescriptions, which they hadn't called in ahead of time, and were told to wait for a bit. The son promptly walked over to have a seat by M & I only to be grabbed by his father (who shot a look my way) and pulled him away. The son whispered something to his father who again glanced our way, whispered something back to his son and that was that. So, they stood - about five feet away from us in the middle of the pharmacy for 20 minutes. Now, perhaps I am being oversensitive. Perhaps it had nothing to do with my beautiful, African American baby. Perhaps the little old man had a terrible case of hemorrhoids and didn't want to sit down. Perhaps he kept looking our way because he was bowled over by how stunning we were. Somehow, I doubt any of those explanations are true. However, being that I couldn't be sure what the problem was, I couldn't say anything. Come to think of it, I'm not really sure what I would've said. Call me naive, but I just don't expect to encounter that type of behavior this day and age.

Pictures

Sorry I've been so terrible lately about posting pics of my cuties. There's been lots going on!! Here is M's Baptism and E's (sniff) preschool (sniff) graduation.

Success

Surgery went great - 4 cysts found, treated and hopefully will not return. M was a champ - as always! It was great to see our AFCH "family" again, and especially nice to only spend 1 day there! We got home yesterday and all is well. She's sore, but eating well and not too fussy.

Surgery Number 16

We're really racking them up this year! M will be having throat surgery tomorrow morning at 9:00 CST. Surgery is always risky and always a little scary, but this time, no one is touching her brain and THAT makes Mama happy! Her ENT will be exploring her throat and treating the cysts or granulomas or whatever else he finds that is plaguing her. She had a scope two weeks ago and we could see a couple little intruders high up, but he thinks there may be more further down. Hopefully whatever he finds, he can successfully treat with this one procedure and she will heal up quickly. She has been pretty miserable for about the past month. We should just be spending the night and coming home Friday - a totally novel experience for us! Please say a little prayer tomorrow for M and Dr. McHottie. (Sorry, Honey, I had to throw that in there).

Kyrgyzstan's interim leader is on Facebook. The other day, this was her Wall Post:

Roza Otunbaeva

To the 65 families that are waiting to adopt their children - thank you for your emails of support. We are working on the resolution of your cases to the best of our ability. We understand your concerns, but please be patient, your families will be reunited.

A glimmer of hope? Maybe.............

Happy Shuntaversary Dolly!

Yesterday marked THREE months since M's last shunt revision. She's never gone more than a few weeks. Today we also saw her neurosurgeon who was beaming - literally smiling from ear to ear when he saw her and told me how great her scans looked. He is thrilled, we are thrilled, and hopefully all will continue to go well for our little angel. We have a six month pass from neurosurgery - hope we can make it! :)

Our waiting angel......

I started this blog back in 2008 to follow the adoption of our second child from Kyrgyzstan. In July 2008, we received the referral of our daughter. It was our hope that she would be home with us in just a few months to begin the life-saving medical treatment she desperately needed. Twenty-two months later, she is still waiting. She is waiting and suffering because of selfishness, bureaucracy, ignorance, and the heartlessness of "The Powers That Be." For nearly two years, we have been kept quiet and have been warned to be "politically correct". I am done. I am done protecting the people that are directly responsible for ruining the lives of so many children. We received pictures from the orphanage this past weekend and they were horrifying. We have submitted to every request, every requirement, paid every fee along the way and yet, these children are held hostage. We are constantly reminded that these children are not "OURS". They "belong" to Kyrgyzstan. Those people needs to be reminded that they are not possessions, but innocent human beings. I know there are people that will be angry for my posting this publicly. Get angry - I don't care. Frankly, MY daughter; MY innocent, little girl; is languishing in an orphanage. She is malnourished, neglected and being deprived of the care and love we have been committed to and longing to give her. There is no end in sight - she may never come home. I want to introduce her to the world - she deserves to have a voice and she deserves to be known.

FOUR!

My son....my hero

It's surreal to me to look at this little man and believe that today marks three years that have gone by since we first met. The orphange sights, sounds and smells are so fresh in my mind. I can still feel the butterflies I had in my stomach while walking up to the door and standing in the room waiting for the caregivers to bring him to us. I also vividly remember the fear I felt when I saw him for the first time. He was so pale, so fragile, so absent looking. Mostly, I remember the great sense of peace and relief I felt when we walked out of that orphanage a family of three. Our time in Bishkek was truly magical. Our time in Almaty was....so....not....magical, but a necessary part of the journey. Stepping off the plane in Chicago, we almost fell to our knees with joy that we were ALL home.

Every single day, MY SON (my heart still skips a beat that I get to call him that), amazes me. I'm amazed at his spunk, his spirit, his intelligence, and at times, his sass. More than anything, I am amazed by his resilience. He has been through more in his short life than most of us will go through in all of ours. While we can still see occasional traces of his past, of institutionalized life, most people would see nothing more than a wild, crazy, happy, super smart, normal, 4 year old boy.

I have learned so much from this little person. I have learned to live in the now, to not waste a single moment because each one is so precious. I have learned that despite what society says, it's okay to be different, to be individuals. I've learned that there are no hardfast rules when it comes to raising kids. My son wants to spend his days writing letters and numbers, pretending that everything (and I do mean EVERYTHING) is a railroad crossing gate, and playing with calendars instead of footballs. That's okay! My four year old suddenly wants to sleep in our bed and I don't see anything wrong with that.

I have no idea what the future holds for my little man. I have no idea what he'll decide to be or what kind of wild rides he will take us on. I do know that I will hold his hand the whole way (whether he wants me to or not); I will support him, love him unconditionally, and do whatever I can to make his life as happy and satisfying as it can be.

So, I want to tell my son today:

"Thank you! Thank you for the joy and laughter you bring to me. Thank you for all you have taught me. Thank you for loving me and allowing me to love you. Thank you for being strong and waiting for us to come for you. I love you with all my heart and I am so grateful for you!"

April 2007

April 2008

April 2009

April 2010

Newsweek!!

http://www.newsweek.com/id/236778

SPONSORED BY:
A prospective mother with the child she hopes to adopt walk the grounds of an orphanage in Kyrgyzstan in 2008. A Long Way From Home
After two years, prospective parents hoping to adopt children trapped behind bureaucracy and chaos in Kyrgyzstan are running out of hope.

By Laurie Rich Salerno | Newsweek Web Exclusive
Apr 21, 2010

A Long Way From Home
After two years, prospective parents hoping to adopt children trapped behind bureaucracy and chaos in Kyrgyzstan are running out of hope.

When the news broke about Torry Ann Hansen, the Tennessee woman who pinned a note on her adopted son and sent him alone on a plane back to Russia, Pennsylvania pediatric nurse Ann Bates composed a one-word e-mail from her Moscow hotel room. It said: "Seriously?"


That was the most that Bates, who was in Moscow to meet the 18-month-old boy she was in the process of adopting, could muster. Thanks to Hansen, it looked as though Bates's Russian adoption was going to be suspended. But this was frustratingly familiar territory for her. She and 64 other U.S. families are already mired in an endless-seeming battle in Kyrgyzstan to bring home 65 orphans whose adoptions were nearly finalized almost two years ago but have since been held up by obstacle after obstacle. To wit: two days before the Russian announcement that Hansen had sent her son back, Kyrgyzstan toppled its own government in a bloody revolution.


"I was sitting in the hotel room just bawling the first night, worried about Bishkek and my friends there and the little girl I hope to one day call my daughter," said Bates, who started the adoption process for the Russian boy in 2009, after mounting obstacles left her fearing she would never be allowed to complete the Kyrgyz adoption. She still hopes to bring both special-needs children to the U.S. "The second night, I heard about the Russian thing. I just couldn't believe it." That's when she sent her e-mail to the other waiting parents in the Kyrgyz group.

In the days since Russia announced a temporary freeze on American adoptions, these 65 families have watched the flurry of media coverage and rapid U.S. government action that's followed: the State Department will send a delegation to meet with Russian officials on April 29 and 30 to smooth over the crisis. In response, many of them have echoed Bates's sentiment of "Seriously?" For all the attention being given to people who might have their adoptions frozen, lost in the noise is the struggle of the families adopting from Kyrgyzstan who have already spent almost two years stuck in a dark comedy of errors.



"I am absolutely supportive of [the U.S. State Department] doing those things [in Russia]. I feel for all those people," says Lisa Brotherton, a California woman trying to complete the adoption of a 23-month-old Kyrgyz girl with cerebral palsy with whom she and her husband were matched in June 2008. "But where's the white horse for our kids?"

It was right around June 2008 that Kyrgyz adoptions began falling apart. Up to that point, the number of American adoptions of orphans from Kyrgyzstan had been increasing for four years, with 78 in 2008, compared with just one in 2004, soon after adoption from Kyrgyzstan first became available. (In 2003 a Colorado woman working in a Kyrgyz orphanage petitioned the government to bring a toddler with severe facial deformities to the U.S. for reconstructive surgeries. After the successful surgeries, she worked with the government to formally adopt the child, opening the door for U.S. adoptions.) Ironically, many prospective parents who had been seeking to adopt internationally wound up in Kyrgyzstan because of the comparative ease of requirements and speed of the process.

After they were matched with and visited a child in Kyrgyzstan, many of the families were told that their adoptions would be completed within weeks. Then a quiet freeze took hold of the process. Scheduled court dates in late summer and early fall that were necessary to finalize adoptions were postponed again and again, but waiting parents were told that their cases would likely be resolved soon. "We all really believed that at the beginning of the year, things would turn around," says Suzanne Boutilier, a California advertising copywriter hoping to complete her adoption of a toddler.

Weeks pushed into months until Feb. 2, 2009, when Igor Chudinov, Kyrgyzstan's then–prime minister, called a moratorium on all international adoptions. He cited fraud and abuses of the system by orphanages and adoption-agency liaisons, and said his government would investigate these cases, work with UNICEF to start drafting new laws for such adoptions, and consider joining the Hague Adoption Convention, the international treaty designed to set consistent and transparent country protocols for international adoptions.

That's when the 65 prospective parents whose cases were stuck in the pipeline contacted the U.S. State Department for help. "I applaud them," Boutilier said of the Kyrgyz legislators. "I would never want to find out after the fact that I adopted a child that wasn't legally adoptable. Unfortunately, it's caused an incredible delay." Time is vital for many of the pipeline children who have disabilities and other special needs—everything from severe cleft palates to cerebral palsy—and the adoptive parents want to address these issues medically as soon as possible. They also fear that the kids will develop attachment disorders and other emotional and intellectual issues that commonly result from growing up in an institution. A study out of Boston's Children's Hospital, the Bucharest Early Intervention Project, found that children raised in orphanages had on average significantly lower IQs and higher rates of mental illness than those raised in family-type environments. "In my nightmares it's going to be another few years [before the adoptions are processed]," says Brotherton, "and we're going to get her home and we're going to have to deal with all the stuff that happened from the time we met her as a 3-month-old until then."

Although the State Department did not send a delegation, as with Russia, it did host a small group of Kyrgyz legislators in Washington and introduced them to some of the waiting families last May. In June it sent a U.S. adoption expert to the country to meet with Kyrgyz lawmakers. And then, after a few more months of inactivity, adoptive parents thought they got their big break.

Prime Minister Chudinov was headed to the U.S. for the U.N. General Assembly in September, so the waiting parents lobbied their respective representatives, asking them to press their cause with him when he was in the country. Both Kansas Sen. Sam Brownback and Pennsylvania Sen. Bob Casey met with the prime minister on behalf of the stranded orphans. According to Brownback's office, Chudinov declared that upon his return he would tell the parliamentary committee in charge of adoption legislation to expedite the 65 waiting cases.


Three weeks later, Kyrgyz President Kurmanbek Bakiyev dissolved his cabinet, forcing Chudinov to resign. The waiting parents were crestfallen.

Proposed deadlines for the Parliament to present and vote on new adoption laws came and went. This February three waiting parents, including Brotherton and Boutilier, went to Kyrgyzstan with an international-adoption advocate to meet with members of the Kyrgyz Parliament, the ministries of health and education, and UNICEF. They also saw almost all the 65 pipeline children in their orphanages in Bishkek and outlying regions, and were able to take pictures and provide updates to the parents waiting stateside. When they left, the four had little hope that their trip had truly changed things.

To their surprise, a month later, on March 19, the English-language news agency 24.kg reported that the Kyrgyz Parliament had passed the bill addressing adoption by foreigners. But two weeks later the rumblings of unrest that would eventually foment the overthrow of President Bakiyev and his administration began. As a result, the Kyrgyz Parliament and the entire administration, which had each spent nearly a year and a half working on the issue, were dissolved, and a new government is now being built, piece by piece.

A U.S. State Department official said that "we are working to determine the provisional government's stance on the pending cases, and the status of the bill and the related draft regulations. We will continue to urge the Kyrgyz government to resolve the 65 cases."

But the families don't know where the bill itself lies, whether it will be enacted by the interim government of former opposition leader Roza Otunbayeva, or whether they'll have to wait for what many are saying will be six months until a new government is elected. Or whether anything will happen at all.



Rich Salerno is a freelance writer in New York specializing in Central Asian affairs.

Please Pray for the People of Kyrgyzstan

Political unrest....yet again. This does not bode well for anyone, especially our waiting children. Click Here to read the story.