Thursday, March 31, 2011


So, I got a phone call from Marissa's neurosurgeon early yesterday morning.  No, not his nurse or his secretary or assistant, NP or anyone else.  He called me himself.  She has had this weird, funky, rashy thing on her earlobe for about three weeks.  No one has been able to accurately diagnose it, nor have we been able to make it go away with oral antibiotics (two different types), antibiotic creams (two different types), or fungal cream.  They have cultured it twice.  Yesterday morning, two colonies - yes two, tiny, insignificant colonies of staph bacteria showed up on her culture.  Likely, they are contaminants and totally unrelated to her ear problem, however, her surgeon does not want to proceed with surgery right now.  He felt that it would be safest to wait until she was off antibiotics and off the steroid cream we are currently using (which is finally working) to ensure there is  nothing that will put her at increased risk of infection.  His exact words:  "I take no chances when it comes to Marissa."  I love that man!!

Tuesday, March 29, 2011

Feelin' like a kid again

Okay, not really, but with the number of immunizations I got today, sort of.  I went in to my travel clinic appointment thinking I was pretty well set for international travel being that I have had all the childhood, Hepatitis B, A, and even Rabies immunizations, but there were four I still needed to get.  So, typhoid - check, menningococcal - check, polio - check, yellow fever - check.  Both my helpers were along today and Esen was being extremely..... well.....five, but redeemed himself when the nurse came in with the shots.  He climbed up on the table, grabbed my hand and said "Mommy, you don't need to cry, it will be done fast."  He always knows just when to turn on the charm.   Those were some pricey, non-insured immunizations, though!  I think my pocketbook hurts more than my arms!!

Sunday, March 27, 2011

Happy Birthday B!

Today B turns 4.  Hopefully this will be his last birthday spent in an orphanage.  My greatest wish is that someday we will be able to celebrate the birthdays of ALL of our children WITH them! 

Saturday, March 26, 2011

Medical Mistakes

February 4, 2010
Something happened this week to a little girl who has become very close to my heart.  She and her family have suffered through a very traumatic experience that they will likely never completely heal from.  No parent should ever have to stand over their child's lifeless body and wonder if they will ever see them awake again and that is what they have had to do.  Reading about their experience HERE and HERE brought back some painful and scary memories of my own.  It took me right back to what has become termed by Marissa's doctors "The Event" of February 3, 2010.   

Several months back I pledged full disclosure here.  I promised honesty and openness even if it wasn't going to make for politically correct, fluffy, happy reading.  Looking back, I think I have done a disservice in some respects by not being totally honest at times.  This blog has become so much more to me than just a place to record our family's history.  It is therapy, it is advocacy, it is education.  It is a place where, hopefully, I can touch people.  It is a place where, hopefully, another mom who is struggling can read and feel like there is someone who understands her.  I have, so many times, gained strength to make it through the day by logging on and reading another mom's inspirational journey.  I hope that I can be that inspiration to someone, that I can offer some shred of support to someone who is in need of it. 

I have said it before and I will say it again - having a medically fragile child is tough.  I don't think there's anyone out there who disputes that statement.  However, there are few, unless they are living it, who can truly understand it.  Every single day, we place our children's lives in the hands of others.  We do research from sun up to sun down on doctors, specialists, hospitals, procedures, medications, and therapies.  We try our best to ensure we are making the best decisions possible for our kids.  It is a huge responsibility to know that WE are the ones who are ultimately responsible.  If, God forbid, something goes wrong, it is OUR fault.  WE made the decision to put our child's care in that particular doctor's hands.  WE chose to give them that particular medication or try that particular treatment.  Stressful?  You bet.  That said, even with the best research, the best intentions, and having chosen the best possible doctors, medications, and professionals for our children, the practice of medicine is imperfect.  People are imperfect.  Mistakes happen every single day.  The likelihood that a mistake is going to happen with a child who is medically fragile at some point in their life is pretty darn high.  Hopefully, the mistake will be small, but occasionally, unfortunately, it can be a big mistake.  In Marissa's case, the mistake was the administration of too large of a dose of an anticoagulant that caused a (third) major brain hemorrhage.  The bigger mistake was that her symptoms were ignored by two separate residents for over 8 hours while she continued to bleed.  Her surgeon (whom I myself hunted down) quickly and appropriately handled the situation and also very quickly realized and humbly admitted his error.  This bleed left her with extensive permanent damage.  It also further complicated her already very complicated hydrocephalus.  I vividly remember not feeling any anger at all over the initial mistake.  Perhaps I was too overcome by shock and fear in the moment. The residents who ignored the signs and pleas of Kevin and the nurses - yes, I still have animosity toward them.  I still felt total trust and commitment to Marissa's surgeon.  I remember feeling that I didn't care what happened as long as she came back to us.  It really wasn't until weeks and months afterward that the magnitude of the situation started to sink in.  Now, over a year later, I can still remember every second of that day and night.  I remember what she was wearing, what I was wearing, which doctors, residents, nurses were involved.  I remember the look on Marissa's surgeon's face when he told me what had happened.  I remember him coming in after surgery and telling me that she'd be returning on a ventilator and that we'd have to "wait and see."  We were lucky - she DID come back to us - changed some, but still Marissa.

Ultimately, the choice was easy for us to stay the course, to stay with the doctor we trusted despite what had happened.  To this day, I have never questioned anything he has said to me.  I have never doubted him.  He is talented and compassionate.  I have never had any reason to believe that he was capable of providing anything but the best care for Marissa.  He is world-renowned for what he does.  He is also human.  However, for some, the choice is not an easy one to make.  There are simply too many possibilities to imagine, too many feelings to consider.  Please pray for sweet Reagan and her family as they try to move past this difficult week and as they move forward and make some very tough decisions.

Friday, March 25, 2011


Marissa's Evening Meds
It's funny, when we talk about our pending Ethiopian adoption and are questioned about B & H with regard to their health status, the one thing that always seems to come up is medication.  For some reason, people cannot fathom giving a child routine medication twice a day. True, maybe it takes some planning and some discipline, but honestly, it is the furthest thing from our minds.  Medication is something we're pretty used to and pretty darn good at around here.  Esen and Marissa both take an Omega 3 supplement at breakfast and a Multivitamin at supper.  In addition, Marissa takes a full round of medications in the morning, another full round in the evening and one extra medication at noon.  It is important that her doses be given at the same time (give or take an hour) each day so sometimes we need to draw up doses and pack meds up if we're going to be out and about, but it's really not that big of a deal.  We need to keep an eye on quantities, expiration and refill dates.  One med is shipped from a specialty pharmacy, one is compounded locally and needs extra time to be prepared.  There is planning involved, but it becomes second nature.  When B & H arrive home, their medication schedules will be hung on the inside of the cupboard and we'll work them into the schedule, too.  So, no medicating two more children twice a day doesn't really doesn't concern me a bit.

Tuesday, March 22, 2011

For the Record

Perhaps in trying to project optimism I have come off as lackadaisical with regard to Marissa's upcoming surgery.  I want to make something blatantly clear.  There is NOTHING easy about letting people whisk your child off to an OR and cut into some portion of her body and it does not get easier the second, third, fourth or thirtieth time it happens.  I am physically sick to my stomach in the days and hours leading up to surgery, while she's in the OR and for a day or two following.  Simply put, there are about a million things that can go wrong and the more often a child has surgery and the more body systems that are involved, the greater risk that at some point something WILL go wrong.  I am an intelligent person, perhaps too medically educated for my own good, and I know the risks.  I view Marissa as a very strong child in spite of her diagnoses and obstacles, but was reminded recently by her neurosurgeon (whom I respect more than anyone I know) that she is, indeed, extraordinarily fragile.  That said, I go about my days and I try to approach each new procedure with a positive attitude.  Deep down, though, please know that I am scared to my core.  I have visions of her surgeons walking out of the OR with heads hung low coming to bear unthinkable news.  Still, I push those deep to the recesses of my subconscious and replace them with visions of my holding her tight while she fights through the recovery from anesthesia and the weeks to sometimes months of physical and emotional recovery following.  I remain positive and put positive energy out into the universe because that's what we're supposed to do, right?  I don't often talk openly about my fears or the 'what ifs' because on some level perhaps hearing them outloud makes me worry that they might be more likely to come true.

I've racked my brain trying to figure out why things with regard Marissa seem different.  Why does it seem to me that if it were someone else's child that others would be dropping everything to come running to offer support but with Marissa it seems business as usual.  Is it just my perception or have people just grown accustomed to her being in the hospital and having surgery?  I wonder if because we chose her and we chose to put ourselves in this "situation" it is less tragic than if she would've been born to us and therefore people feel we're stronger or more equipt to deal with these things.  Perhaps I've unintentionally pushed people away.  Whatever the reason, the truth is I feel guilty when I have to ask for help so I try really hard not to do it.   People have busy lives and they certainly don't owe us anything.  I don't expect anyone to want to drop everything and come running just because we need help.  Still, sometimes I think it'd be nice to know that there was an unconditional offer of help out there.  That doesn't mean when help or support is offered I don't appreciate it,  I just don't want to be a burden and I don't want to feel like by accepting help we've ruined someone's day or weekend or whatever.  I'm overly sensitive that way, it's one of my flaws, I know.

At the risk of sounding like a big whiner and complainer, let me say that I am grateful and totally appreciative of everyone who does offer up prayers and well wishes.  We always receive comments on Facebook and here on the blog, text messages, emails and even a few phone calls when we're hospitalized and having surgery and the love and support mean the world to us.  I'm always amazed by the support we receive from our virtual family and especially the 'strangers' who truly get it and who I know would, if they could, jump on a plane and be by my side in an instant.

Marissa is tentatively scheduled for surgery next Friday, April 1st, pending the results of a few more tests she will have today.  The plan is for ENT to take a look at her throat, remove any new cysts that have grown, dilate her subglottic airway again if necessary; Neurosurgery to evaluate her ventricular shunts if necessary; General Surgery to assist with the placement of the distal shunt catheter into the gall bladder.  It SHOULD be a relatively quick, uncomplicated procedure necessitating a relatively short stay in the hospital.  I will, as always try to keep everyone updated.

Monday, March 21, 2011


I have lots of little updates to share!

MARISSA:  We saw the general surgeon last week who agreed to do the VGB shunt placement as long as some pre-operative lab tests, a gall bladder ultrasound, and barium follow-through all proved normal.  Funny how we forget things, but Marissa had Cholestasis as a baby secondary to long-term TPN use which could've possibly left her with some gall bladder stones or other issues.  These tests will ensure that her gall bladder is as perfect an environment as possible for the shunt.  She has been.......irritable to say the least.  She does A LOT of random screaming, biting her hand, pulling her hair and throwing her head back.  While the last few days we've seen a slight improvement in her GI issues and attitude, she continues to be "off".  We'll see how the tests this week shake out, revisit the surgical plan next week and then make the final decision.  We know something needs to be done because she is just not herself and is simply not a happy girl.

ESEN:  His IEP is FINALLY in place.  Yes, it took five months (totally unacceptable in my opinion), but at least it's done.  There has already been an improvement in his behavior at school with some of the consistent routines implemented.  The therapists are seeing him regularly and hopefully we'll see some progress.  He is excited about his new brother and sister although still grieving the fact that Kamila is not yet home.  He continues to blow us away with his smarts!

KAMILA:  We received word last week that she is scheduled for her second stage surgery in April when the German craniofacial team travels again.  The US Government remains "engaged" (their words) although the speed with which they function is pretty unimpressive.  Our USCIS documents expire for the final time in May and with the expenses involved with our Ethiopian adoption, we will not be renewing until there is concrete evidence that travel to Kyrgyzstan is imminent.  We have spent over $30,000 on Kamila's adoption the past 3 years (oddly, the exact amount we need to raise to get B & H home).  IF the Kyrgyz Govt. ever allows adoptions to resume I firmly believe there will be another $10,000 or more involved in getting her home.  It's so sad to me that our childrens' lives come down to money.

B&H:  Good news and bad news.  The Ethiopian Government is taking steps to ensure transparent, ethical adoption processes.  This is good news overall.  The bad part is that it could result in delays to the process.  However, if it means safer and more ethical adoptions, then one cannot complain about it.  The really bad news is that the US media has taken this information and blown it so far out of proportion that the bad press could actually be MORE damaging to the process.  Good news - two families have recently travelled and we've been blessed by photos and video of the children!! They are SO beautiful!  Bad news - We thought both children were on ARVTs.  We found out that while B is on three ARVT medications, H is not on any.  It is good that she is maintaining her health, however, if she were here, she'd be on them to prevent her from becoming ill.  With resources limited in Ethiopia, she is simply not sick enough to qualify for ARVT medication.  Hopefully she will continue to do well until she can get home.

FUNDRAISING:  A HUGE thank you to the families who have contacted me and offered to do our 147 Million Orphans Fundraiser in your communities!  We are so grateful that there are people out there with huge hearts for orphans and adoption!  We're excited about this fundraiser because it not only benefits B & H, but the 147 Million Orphans Mission.  We would always love more support, so if you're interested, email us at

Fundraising for adoption is and always has been a very controversial subject.  Many feel it is totally unacceptable and that is definitely their perspective.  Many feel that if someone doesn't have the money upfront to adopt, they shouldn't adopt.  I could make the argument that if a person doesn't have $40,000 sitting in the bank ready to hand over to the hospital upon delivery of their baby they shouldn't get pregnant either, but that probably wouldn't be well received.  My great friend, Kim, recently wrote a reference letter for us for an Adoption Grant application and in it, she said:  "It takes special people to adopt special needs or medically complex children.   I think if they are willing to raise and love these children, the rest of the world community should help them however we can."    I was so touched by that statement.  It exemplifies how I feel about adoption and humanity in general and brings me back to the quote that started this all:  "If not us, then who?"  I keep thinking, hoping, praying, that there is someone out there somewhere who is perhaps extremely financially comfortable, who will be touched by our story and by our children and who will perhaps sponsor a portion of their adoption.  Hey, a girl can dream, right?  Until then, we will continue to work hard and pray hard!

Monday, March 14, 2011

Let the Fundraising Begin!

When we started this process, we knew that funding the adoption of two children would be our most difficult feat.  Still, we felt that anything is possible with commitment, hard work and of course, the support and generosity of others who have a heart for orphans.  That said, we're embarking on our first fundraiser!  We've chosen to do a 147 Million Orphans fundraiser not only because they have really cool stuff, but because I love what they stand for.  Because only I can place orders for our family and would have to pay twice to ship, I'm unable to take long-distance orders.  What I would love to do, however, if anyone is interested, is to send out a brochure and order form for families that may want to fundraise on our behalf.  You would pre-sell the items and when you are finished, send me back the order form and money.  I would then place the order and ship the items bulk straight to you to be dispersed. Here's the breakdown of the profits in case you want to know:

~25% of any purchase goes to the 147 Million Orphans mission
 40% of the purchase will go into our adoption fund
 10% of the purchase will be donated to B & H's orphanage

It's a win-win-win situation!!

If you're close by, expect to see me with a brochure coming your way soon.  If you're not close by, but are interested in possibly doing a fundraiser in your community on our behalf, please leave a comment and I'll get in touch with you.

Sunday, March 13, 2011

Knowledge is Power

If you haven't seen this inspiring video, please take a few moments to watch it and then, please post it or pass it on. Thank you, Erin, for sharing it.  The more we educate and advocate, the more children that will hopefully have an opportunity to live normal, healthy, happy lives.  Whether or not your lives have personally been touched by HIV, we all have a responsibility to help spread the truth.

Kiel and Carolyn Twietmeyer are the founders of Project Hopeful and a huge part of the reason we opened our hearts to the adoption of HIV+ children.  They are truly an inspiration.  The quote that always resonates with me is "if not us, then who?"  Those are five very powerful words!

Thank you for taking some time to watch.

Saturday, March 12, 2011

VGB Shunt Update

So, of course, I have spent the last two days researching VGB Shunts.  I have read study after study and have not found anything to sway me away from trying it for Marissa.  It is simply the best option for refractory hydrocephalus when VP shunting has failed, ventriculo-atrial and ventriculo-plueral shunting are not feasible options.  As for another opinion, our neurosurgeon is the best in his field.  HE is who the toughest cases are sent to.  HE is the one who is consulted by other neurosurgeons when they don't know what to do next.  HE is the one who sees patients from around the state and around the country when their cases are too complex to be treated locally.  There simply is no one better to get a second opinion from.  I have absolutely no reason to question anything he tells us and a second opinion would do nothing but waste precious time for Marissa.  We still have to see the general surgeon on Tuesday to discuss the procedure.  Perhaps he will have some miracle up his sleeve that will make Marissa's abdomen more hospitable to the shunt and draining fluid, but I kind of doubt it.  Currently, she is so distended she cannot bend at the waist.  She is uncomfortable and constantly gagging herself. 

In a shred of good news, last night she started rolling all over the living room which was totally amazing to watch!  I guess when you're shaped like a beach ball, it's easier to roll.  I promise I'll post a video later today.

Don't mind the chatter in the background - big brother, Esen was not too impressed with Marissa's new skills!

Thursday, March 10, 2011

GB Shunt?

Okay hydro parents - ever heard of one? neither.  Marissa is simply not tolerating her excess abdominal fluid.  She didn't tolerate it previously when she had VP shunts which is why her neurosurgeon converted her to a VA shunt.  She did awesome with it for 10 glorious months and then it failed in December.  During that surgery, they couldn't get the distal catheter placed back into her heart and trying resulted in an emergent procedure with subsequent significant blood loss.  It made everyone pretty darn nervous.  Two short weeks later, she developed a clot.  That made everyone even more nervous.  The decision was made to convert her shunts back to VP shunts.  She never fully recovered from that surgery and just hasn't been right since.  Today, the determination by her neurosurgeon was that we need to come up with an alternate placement.  Here's the thing - he doesn't want to put it back into her heart, too risky and not a good long-term solution; she is not a candidate for a pleural shunt because she is a former micro preemie with less than perfect lungs; the shunts cannot continue to drain into her abdomen; and she cannot go without shunts.  That leaves us with a fairly uncommon site as a last resort - a gall bladder placement.  Hmmmm......sounds interesting, and the resident's eyes lit up at the suggestion.  There is a higher rate of infection (about 15%) and it certainly could fail, but the worst case scenario is loss of her gall bladder - not ideal, but not something that would be critical.  She would be his third (and by far the youngest) patient to undergo such a procedure, but as it seems that we are kind of out of options, we are considering it.  We will meet with the general surgeon who would assist with the placement to discuss the surgery and possible after effects next week Tuesday.  Until then, we will continue to manage her comfort as best we can.

Sunday, March 6, 2011

Ethiopian Cuties

If you've had some time to peruse our new home here you may notice there are a few new buttons, links and features.  Perhaps you've been astute enough to see that there is a new agency link and a new Adoption Fund ticker.  Yes, that's right, we are pursuing another adoption and no, we have not lost our minds. 

We have always wanted a large family.  Three years ago we believed that Kamila would be our second child.  That did not happen.  Marissa came second.  For the last two years we have waited and prayed and fought hoping that Kamila would, indeed, come home.  Sadly, she has not....yet.  We are not giving up on her, but at the same time decided several months ago that we simply could not keep waiting another year and then another to see if the Kyrgyz Government would ever allow adoptions to resume.  We felt strongly that we had other children out there waiting for us. 

That proved to be true when we discovered two beautiful, very special waiting children in Ethiopia that just seem they will fit perfectly into our family.  I'm sorry that I'm not at liberty to share much about them here until we've passed the court process.  I can tell you that 'B' is a handsome, playful little boy and 'H' is a gorgeous, spunky little girl and that they were born in March and November of 2007 respectively.   Both children tragically lost their mothers, have no other siblings or family to care for them, and are currently in orphanage care.  We are hoping that the process goes smoothly and quickly so they can be home sometime this Fall.  It may be a long shot because everything really needs to fall perfectly into place, but we're sure going to work hard to make it happen.  That said, we have a LOOOONG way to go on our fundraising.  I do hope you'll check back and help us spread the word.  I'll be adding fun gadgets and fundraisers here very soon so that those who feel lead to support 'B' & 'H' will have a way to do so.

I will do my best to keep you updated as we press on.  It could turn out to be a very busy and very great year if all three of my waiting "babies" make it home!!!!

Saturday, March 5, 2011


I was able to talk our neurosurgeon into letting us out today despite Marissa's less-than-perfect demeanor.  Her MRI looked great, her KUB looked pretty darn good, chest x-ray was clear, labs were normal.  Seeing as there was no real obvious physical reason for her extreme irritability, I proposed that it was just plain and simple her being sick and tired of being there.  He felt it would be reasonable to keep her another day to just see how things went, but I made the argument that I really felt I could be a better judge of how things were going if I could get her back in her own, comfortable environment.  So, off we went and it feels SO GOOD to be home!!   I'm happy to report that while Marissa is still irritable, it has tapered significantly and she is eating and drinking much better at home!  Hopefully we're here to stay for a good long while.

Oh, on a side note, please stop back tomorrow for a very important announcement!
To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Thursday, March 3, 2011

Small update

Thank you all so much for the well wishes, prayers and what not.  I'm sorry I was unable to update sooner.  The stomach flu graced my presence last night and this is really my first opportunity to be upright at the computer.  I sure hope the boys and Marissa don't end up with it 'cuz it was the worst one I've ever had!

Anyway, Marissa is doing well today.  She was free with her smiles this afternoon and despite some continuing constipation issues (which we are diligently....working on) she looks and feels pretty good.  Her shunts appear to be functioning better than ever.  Hopefully we'll be discharged tomorrow.

Wednesday, March 2, 2011


Marissa went to surgery around 0930 this morning.  She had her twenty-something-ish shunt revision.  Her neurosurgeon reports that all three of her shunt catheters were occluded by brain tissue.  At some point in the last two months her shunts were functioning too well and she overdrained causing the ventricles to close down on the ends of the catheters.  As a result, "sticky" tissue clogged up the openings.  This, unfortunately, is what kept happening previously when she had a VP shunt.  Her VA shunt/s worked so much better.  He also continued to be slightly concerned about the appearance of her abdominal xray from yesterday.  Dissatisfied by the answer he got from the pediatrics team, he consulted with general surgery late last night who agreed it should be looked into.  He has ordered an abdominal ultrasound for later today.  If there is no pseudocyst related to her distal shunt catheter, then general surgery will take over and follow her as an outpatient.  We will likely give her some time to heal before exploring things further.  In all likelihood, today's surgery is a temporary fix and Marissa will need further intervention to keep her shunts functioning properly whether that means moving the distal catheter back to her heart or adding a second valve in the distal portion of the VP shunt tubing.  Time will tell.

I'm still waiting for her to be ready for me in the PACU and will update more as I know it.  Thanks for all the well wishes and prayers.  We certainly appreciate it.

Tuesday, March 1, 2011


HI!  Thanks so much for stopping to visit us at our new home!  I hope you'll take a minute to "follow" us and also please pass our blog address along to friends who may be interested.  If you explore the page you'll probably find a few new links and buttons to check out.  I've also added tabs for the kiddos so they'll each have their own special spot.  If your a long-time reader you'll notice that nothing has been lost, I've imported the "old" blog, so all the old posts and photos are still here. :)

I look forward to having you and hopefully you'll enjoy being a part of our family.

Hospital admission number.............oh, who am I kidding??

As if I could actually count how many times she's been admitted - right!

So, we're here again.  It all started with a "simple" cold last week.  Colds, as I've said a million times before, are not so simple for M.  There is a reason I am the Clorox Queen, Germ-a-phobe, Purell Nazi - whatever term of endearment you wish to bestow upon me.  Illnesses, no matter how insignificant or minor they may seem to the average individual wreck havoc on M's system.  You see, getting sick isn't "good for her" contrary the the advise of so many well-meaning (non-doctor) types that like to give me advice.  I took her to see her pedi on Saturday who promptly started her on an antibiotic to hopefully ward off the secondary bacterial pneumonia that always seems to join her following a cold.  I should mention that this is her first illness of the very long Wisconsin winter, so we HAVE done quite well.  Unfortunately, she had already started into this very unpleasant gag-vomit cycle which continued through the weekend.  That quickly lead to increased issues with her already compromised bowels which may have lead to issues with her distal shunt catheter which may have lead to a complete, multiple shunt malfunction.  Further testing today will hopefully tell the whole story.  All we know for now is that she is miserable, her brain MRI looks awful, her abdomen is distended, her xray looks crappy (pardon the pun) and we could be looking at surgery. 

Stay tuned.............................................................