"We witness a miracle every time a child enters into life. But those who make their journey home across time and miles, growing within the hearts of those who wait to love them, are carried on the wings of destiny and placed among us by God's very own hands." ~ Anonymous.

Saturday, April 24, 2010

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

Thursday, April 22, 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.

Wednesday, April 7, 2010

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.

Sunday, March 21, 2010

As Promised







Friday, March 19, 2010

BAD Blogger

Sorry......I've been neglecting my blog terribly. I know, I still owe pictures and I promise as soon as I am able to take a breath I will get some uploaded. There seems to be a lot going on. M is doing well - tolerating her IV antibiotics (2 more weeks), eating, pooping, doing all the stuff she should do. She continues to have swelling around her posterior shunt, but her neurosurgeon has assured us he's not concerned about that and expects it to resolve on its own. Her MRI last week showed improvement in some of her ventricles, although her temporal horns are still enlarged. it's early, though. Her Echo showed that there is still vegetation on the end of her VA shunt catheter. Neurosurg wants to finish antibiotics, wait three weeks, do blood cultures, another Echo in May and reassess at that time. So, we just keep plugging along. She is still having nystagmus pretty much constantly and doesn't want to focus and track with her eyes. She sees ophthalmology next week and Neurology the following week. It's possible she's having a lot of subclinical seizures. In any case, I hope we get some answers soon.

E is loving life now that the snow is gone. It's crazy - one week there was like 6 inches of snow covering the ground and the next week it was all gone! It's been nice enough to go for a walk the last couple of nights after supper, ride his bike, draw on the driveway. Life is good!!

We have some really difficult decisions to make regarding K. There are new rumors regarding proposed new legislation that could put our completion of her adoption at risk. There is also a huge decision to be made that affects her medically. We are in such a tough spot right now.

I promise to update soon - WITH PICTURES! Happy spring everyone!

Wednesday, March 3, 2010

Home Sweet Home

Yup - you read it right - we are ALL HOME!!!!! At the risk of jinxing things, I'm going to say just one time - M is doing so great! In an effort to rescue her VA shunt catheter as well as her Hickman, the ID and Neurosurg docs have chosen to extend her IV antibiotic course to six weeks. Because of that decision, the decision was made to allow us to do the remaining five weeks of IV antibiotic infusions at home. Let me tell you after TEN, yes, TEN long weeks in the hospital, there is nothing like having all four of us under one roof again. I promise to catch up on pictures and other stuff soon. Today is Neurology and Pediatric appointments for E.

Wednesday, February 24, 2010

Septicemia

Three.

More.

Weeks (at least).

Monday, February 22, 2010

Close, but no cigar

Not today anyway. The plan, which I have not really discussed much for superstitious reasons, was to go home today. Beginning Saturday, M started having fussiness and abdominal.......issues (I'll spare you the details). The abdominal issues have resolved, the fussiness has escalated to epic proportions. A shunt tap today yielded results consistent with a shunt infection. An EEG revealed many sub-clinical seizures during the course of the test. Labs revealed a sudden, dramatic elevation of her liver enzymes. That's a lot of crap (for lack of a better word) to find the day you're supposed to be discharged after a two month stay in the hospital.

More tests, more discussion, pediatric hospitalist consult, blah blah blah. I spent the entire day preparing for the worst, but hoping for the best. We got it, the best that is, in the form of a severe bilateral ear infection. I know most people won't understand this, but I nearly jumped for joy when those words were uttered. Okay, yes, I feel terribly sad for M that she has to endure such pain, but seriously, an ear infection - that's so....NOTHING! This girl has had 14 brain surgeries in the past 4 months. She has had 3 brain hemorrhages. She has been in the hospital for 6 of her 7 months of life. An ear infection? We can oh so happily manage that!!

There is still that chance that she could have meningitis brewing again which would lead to the shunts being removed, ventriculostomies placed, antibiotics for two weeks, new shunts placed, etc. etc. Essentially, we would start over - AGAIN. Our neurosurgeon feels quite confident at this point that that's not the case. We sure as hell hope he's right!

As for the subclinical seizures, as many as she had today during her EEG could definitely cause irritability, confusion, and lethargy. The neurologist increased her Keppra and hopefully we will find a nice, stable dose for her.

M will get an abdominal CT tomorrow to rule out any liver problems or infections. As many VP shunts as she had fail and the 2 that were consecutively infected could mean that something is/has been brewing down there.

So, we're close - as Kevin says we're just "perfecting", tweaking things so that when we walk out of these doors we will have absolutely no reason to come back anytime soon.

Yesterday, we took E to the model railroad show in town. It was pretty incredible. What a fun (and expensive) hobby! He is a train junkie and enjoyed it so much. I think he really felt special that he got to have Mommy AND Daddy all to himself for a few hours. Truth be told, Mommy and Daddy enjoyed it quite a lot, too!! I so look forward to the day when we can do something with our entire family.

Last night I was pleasantly surprised to find new pictures of our beautiful, K, courtesy of the traveling Kyrgyz mamas. She's so big and still so bright and happy looking. She is one strong girl, I have no doubt about that.

Hopefully tomorrow brings good news for me to share. Sorry for all the picture-less posts lately. I can't upload here and I haven't been home for more than a few hours at a time this last week. Precious time that is best spent cuddling with a snuggly, silly, little monkey. I promise I'll catch up as soon as I can. :)

Wednesday, February 17, 2010

I Love My Village

In my last post I talked about villages, communities, other cultures who live to support each other. Even in our face-paced, selfish society, we have villages of our own. They are made up of friends, family members, congregations, coworkers, neighbors, and sometimes even complete strangers. Today I was reminded of that.

For the last 2 1/2 years I have been proud and blessed to be an employee of an incredible health care system. I enjoy my job, I have great respect for my employer, and I love my coworkers. Sure, we all have "those days", but for the most part, I don't have anything to complain about. Today, I was presented with another incredibly generous gift from team members throughout the health care system. Team members that I currently work with, used to work with and some whom I've never even met. I was reminded yet again that there are those in this world who are compassionate and inherintly good, unselfish people. THANK YOU!!

M returned to surgery this afternoon. I cannot tell you how many this is now in the last 2 months. This time she went 6 whole days - a new record! We are in limbo - it has been 2 months that we've been living apart, half of us in this hospital room, half of us at home and working. Yet, the world goes on around us. We've been living on one income since October and that causes a great deal of additional stress. We are at a point where we have to decide between paying the mortgage, buying food and diapers, or paying other bills. Today's gift has taken the burden off for a while longer and for that we are so grateful!

In talking with the Hospital Health Psychologist today(who apparently was sent to make sure I didn't need to go to the rubber room) I came to a conclusion. It's not only the fact that it's hard to be here, hard to watch M suffer over and over again, hard to have our family separated, hard to not know how long my job is going to be there waiting, hard to figure out where the money is going to come from; the lack of control is excruciating! I am, by nature, a control freak. I thrive on schedules and knowing what's going to happen when. I have NO CLUE what each day is going to bring. Will it bring seizures, toxic drug levels, another surgery, more scans, new medications, new nurses, new residents, new medical students. I have to tell M's story over and over and over again. I have to submit to others' ideas and probably the most exhausting, I have to fight every day to get people to listen to me and believe me when I tell them there is something wrong. I have to be my daugter's advocate because she can't do it for herself. I have zero privacy, strangers in and out all day and all night, a bathroom door that doesn't close tightly and definitely doesn't lock. I have to rush through a shower whenever a convenient moment presents (and some days it doesn't), rush down to get a bite to eat not when I'm hungry, but when the schedule allows. I know I could leave her with a nurse or a volunteer, but I choose not to. This is no way for a person to live, yet I feel I can't and shouldn't complain. I have to be grateful that we have such excellent care.

So, that's where I stand today - I'm frustrated, sad for my girl, but overwhelmed with gratitude for the generosity and compassion of others. I truly do love my village!!

Tuesday, February 16, 2010

Sorry for the delay

Thank you, Ann, for the gentle reminder that I've been too quiet these last few days. So, what's been going on?

We're still hanging in there. We're still a family separated; two of us 60 miles away and 1 of us 6000 miles away. We're getting by and maintaining a shred of sanity.

For the last almost eight weeks we've been blessed to have more prayers sent up and good wishes passed on than we could ever imagine. We've been blessed to have excellent doctors and supportive family and friends to see us through this. About a week ago, however, we were given an incredible gift. It's not often in our country that we see true compassion and unselfishness at work. In other countries we see it all the time. In the face of tragedy whole nations, communities, villages drop everything to come to the aid of their fellow man. It's not often in our society that people sacrifice for others with no expectations of receiving something in return. Sure, we talk about it a lot, but how many of us actually do it. That is exactly what has happened for our family. We have been touched by an angel - an individual with true unselfish compassion, an individual who dug deep and realized that when someone in your "village" needs help, you drop everything and come to their aid. We have received not only an amazing gift from this person (you know you are), but renewed faith and spirit at a time when both have been waning. "Thank You" seems insignificant, but I guess that's part of our "we must return the favor" mentality. Truth is, we can't possibly return this favor, we can only accept this amazing gift and say simply, publicly "THANK YOU FROM THE BOTTOM OF OUR HEARTS!"

M is doing well. We are out of the PICU and truth be told, I want to go back. I'm not comfortable on a regular floor. I miss our nurses, I miss having residents and doctors around all the time, I miss being able to get something done immediately instead of having to wait all day! I digress......It's been four days since her last surgery - a current record. She had an MRI, and dye study yesterday and her shunts appear to be functioning well at this time, with the exception of one trapped temporal horn. I won't go into detail, but my hydro parent readers get it. Not sure yet if there's going to be any intervention for that. Our neurosurgeon feels best at this time to let it go as long as it is not causing her problems. I think it IS causing problems, but that's a battle I will have to fight. He plans to possibly do a repeat dye study today through her other shunt just to ensure we get the whole picture before possibly starting to talk about going......H-O-M-E. She has had an extremely difficult time adjusting to the anti seizure medications. She's been pretty much sleeping nonstop. M still does not have use of her left arm/hand and her left leg is weak. She still needs a lot of "support" with eating as her sucking is poor. It's impossible to tell how things will pan out long term. She has been through so much this past 2 months.

E is continuing to be a trooper through all of this. He is definitely having some significant (new) insecurities. He cannot be left alone at all. You can't leave the room, go to the bathroom, take a shower, nothing. It has carried over into school where he launches into a complete meltdown if his teacher is out of sight. I feel so guilty and it breaks my heart that he feels like he's going to be left by any of his loved ones. I know he's resilient and in five years he won't even remember this, but right now, it's so hard to watch him struggle. Other than that, he is doing incredible with school and is learning more each day. He has starting pitting Mom and Dad against each other. Since we are all never home at the same time he will do something inappropriate, be reprimanded and chime in with "Oh, Daddy lets me do it." Yeah right! He had his neuropsych evaluations in January. He definitely has Sensory Processing Disorder and possibly ADHD, although I'm not a fan of the ADHD diagnosis - I think it's WAY overused (go ahead and flame me if you wish). I definitely see the SPD, and have since he came home almost 3 years ago, but he is also an almost 4 year old LITTLE BOY - they are supposed to be hyper and a little crazy! We have tools and resources available to work with him on his sensory issues, but as for medicating my 4 year old - ABSOLUTELY NOT - NO WAY,NO HOW!!

K is still hanging out at the BBH waiting for her family to come and rescue her. She received a very special visit this past week from 3 beautiful, talented waiting Kyrgyz mamas who travelled with the president of JCICS to Bishkek on Feb 5th. Their goal was to meet with as many government officials as possible to get our plight heard. They have been extremely successful! They have worked so hard for the children and waiting families and we are so grateful to them. February 15th was the "magic" day that Parliament was supposed to hear and vote on adoption legislation. It was the day we've been waiting for since oh, last fall. It came....it went....nothing happened - BIG shock there (insert sarcasm). While I do have renewed faith that these adoptions will be completed....eventually, I am still frustrated to no end that "my" little girl has to sit and suffer.

So, that's it in a nutshell. We're hanging in there, waiting to all be healthy and home together again.

Thursday, February 11, 2010

Membranes, Adhesions and Shunts oh my

So, after a day of extreme fussiness, lethargy, seizures, EEG, CT scan, more fussiness, even more lethargy and a helping of bradycardia M's neurosurgeon decided to take her to surgery tonight instead of waiting until tomorrow morning.

His response to surgery is usually "it went great", "things look good", etc. Tonight his response was a tentative "it went....okay." Not good enough, but it's what we get this time. It seems my girl likes to quickly build up membranes and adhesions and close all of her little pathways off so her CSF cannot drain properly.

Ultimately, the surgeon felt his and her best option at this time was two shunts. Again, not ideal - 2 shunts means 2 more sources of potential complications. Hopefully this will be the answer for her, though.

For now, we wait, as always, to see if she develops problems or if....dare I say it....we actually get to go home soon.

Seriously....

...why can't she get a break? Back to surgery tomorrow..............

Wednesday, February 10, 2010

Surgery Number......

.....ugh - I can't count them anymore!

Anyway, M should be heading down to surgery within the next hour. I'm hoping with every part of my soul this is the last one for a very long time. I have to admit, I am N-E-R-V-O-U-S this time. After everything that has happened (i.e., gone wrong) over the last two months, fear is getting the best of me this morning.

There, I got that off my chest, now back to sending positive energy into the universe.

Saturday, February 6, 2010

What a difference a day makes!

Thursday & Friday
Saturday

Leap forward, baby steps back

Good news is that M was extubated last night and handled it like a champ! She had a very brief period of difficulty, but then settled in and rested fairly comfortably. The bad news is that this incident has left her with some neurologic damage. She has lost a lot of function in her left arm/hand as well as her ability to suck. She is being tube fed and we are "practicing" a lot with the bottle. She is definitely interested, she just can't quite make it happen....yet. There is a possibility this is all transient and function could return. Only time will tell. She is not as interactive as she was before and I haven't been able to coax a smile out of her yet, but it is still early. The important thing is that she came back to us - that is all we have ever asked. We're really good at facing challenges and she is one tough, stubborn girl. We're hopeful that with intervention, therapies and a lot of hard work we'll make great strides.

Friday, February 5, 2010

Ghana Court Day

Shout out to blog buddy Michelle and super-husband Keith as they head to court today for the adoption of their beautiful daughters, B & V. Sending positive vibes to Ghana for the issuance of a full adoption decree today!

Thursday, February 4, 2010

In a (pea)nut shell....

So, our little peanut is holding her own. She spent 6 hours in the OR last night where her neurosurgeon successfully removed all of the blood and clots from her hemorrhage. She returned to the PICU intubated and on a ventillator. Today her lungs are "wet", so because of that and the fact that she underwent 2 rounds of anesthesia, throat surgery, 2 brain surgeries and had neurologic complications - all within the last 4 days, they opted to leave her on the vent for a day or two. M's neurosurgeon plans to replace the VA shunt as soon as she is stable enough for a return trip to the OR. God PLEASE let this be a successful, long-term placement!

Wednesday, February 3, 2010

Success short lived

I wish I was posting pictures of my happy, healthy girl, but she is in surgery right now. M suffered a significant hemorrhage in the left side of her brain. Her neurosurgeon is removing the blood, flushing her ventricles and placing another ventriculostomy (external shunt). Yes, we are starting over.

I'm tired and sad.

Surgical Success!

M's surgery went well. They were able to put in the VA shunt like we had hoped and her neurosurgeon is extremely pleased with how things went. Hopefully we can start celebrating weeks and possibly even months of shunt success.

The ENT found a very large cyst below M's vocal cords. He "de-roofed" it and hopefully it will heal down flat. Chances are she may need another procedure to take care of it for good, but this is a start. He expects she will have a marked improvement with her breathing as a result. Right now she has a horribly sore throat that is prohibiting her from eating much, but with rest and some steroids, it should heal relatively quickly.

We feel so blessed to have made it to this point. It has been a loooong, challenging couple of months. Hopefully we are one day closer to having our whole family home together again!

This entire experience has definitely changed us - for the better, I think. We have a renewed appreciation for life, our kids, our health, our jobs, everything we have. I have been overly sensitive (and pretty annoyed) lately about people who claim to be "sooo busy" all the time. I hate hearing people complain about working, not having enough money, and my pet peeve - people who complain about their kids! It's summed up well by something that my darling husband forwarded me this morning. It really touched me and reinforced what we've learned about the truly important things in life. Please read carefully and try to take it to heart:

Too many people put off something that brings them joy just because they haven't thought about it, don't have it on their schedule, didn't know it was coming or are too rigid to depart from their routine.

I got to thinking one day about all those people on the Titanic who passed up dessert at dinner that fateful night in an effort to cut back. From then on, I've tried to be a little more flexible.

How many women out there will eat at home because their husband didn't suggest going out to dinner until after something had been thawed? Does the word 'refrigeration' mean nothing to you?

How often have your kids dropped in to talk and sat in silence while you watched 'Jeopardy' on television?

I cannot count the times I called my sister and said, 'How about going to lunch in a half hour?' She would gas up and stammer, 'I can't. I have clothes on the line. My hair is dirty. I wish I had known yesterday, I had a late breakfast, It looks like rain'. And my personal favorite: 'It's Monday.' She died a few years ago. We never did have lunch together.

Because Americans cram so much into their lives, we tend to schedule our headaches. We live on a sparse diet of promises we make to ourselves when all the conditions are perfect!

We'll go back and visit the grandparents when we get Steve toilet-trained. We'll entertain when we replace the living-room carpet. We'll go on a second honeymoon when we get two more kids out of college.

Life has a way of accelerating as we get older. The days get shorter, and the list of promises to ourselves gets longer. One morning, we awaken, and all we have to show for our lives is a litany of 'I'm going to,' 'I plan on,' and 'Someday, when things are settled down a bit.'

When anyone calls my 'seize the moment' friend, she is open to adventure and available for trips. She keeps an open mind on new ideas. Her enthusiasm for life is contagious. You talk with her for five minutes, and you're ready to trade your bad feet for a pair of Rollerblades and skip an elevator for a bungee cord.

My lips have not touched ice cream in 10 years. I love ice cream. It's just that I might as well apply it directly to my stomach with a spatula and eliminate the digestive process. The other day, I stopped the car and bought a triple-decker. If my car had hit an iceberg on the way home, I would have died happy.

Now...go on and have a nice day. Do something you WANT to... not something on your SHOULD DO list. If you were going to die soon and had only one phone call you could make, who would you call and what would you say? And why are you waiting?

Have you ever watched kids playing on a merry go round or listened to the rain lapping on the ground? Ever followed a butterfly's erratic flight or gazed at the sun into the fading night? Do you run through each day on the fly? When you ask someone 'How are you?' Do you actually hear the reply?

When the day is done, do you lie in your bed with the next hundred chores running through your head? Ever told your child, 'We'll do it tomorrow.' And in your haste, not see his sorrow? Ever lost touch? Let a good friendship die? Just call to say 'Hi'?

When you worry and hurry through your day, it is like an unopened gift.... Thrown away.... Life is not a race. Take it slower. Hear the music before the song is over.

Tuesday, February 2, 2010

Surgery Day

M just went down for her hopefully uncomplicated VA Shunt placement. She's had 3 failures in 3 months so we're praying this is her last surgery for a long, long time. There is concern that due to her left-sided Hickman placement, she may not be able to get the VA.


He will then have no choice but to place another VP shunt. We really don't want that because chances are it will fail as the other 3 have. Her abdomen and liver just cannot handle the volume of drainage. Putting a VP back in feels like taking ten huge steps backward. I'm afraid we're going to end up back in this same spot in a week or so.

While she's in the OR today, she'll also be having a scope performed by ENT. Hopefully they can get to the bottom of her floppy airway and noisy breathing. Chances are it is all a result of her being on a ventilator for a month after she was born, being intubated so many times for surgery and it'll be something she will eventually grow out of. It'll be nice, though, to finally have an actual answer or at very least a theory.

Please lift up some prayers for our little fighter and her surgeons today.