September 22, 2010

And now it begins...

Many of you are already avid followers of Charlie's journey and share your support and love for the Greenman Family. As a friend, neighbor, and the lucky mother of a little girl (Mackey) who got to go to "play-care" with Walker and Sarah, I am so fortunate to bear witness to the love, courage, and strength of Charlie's parents and one-of-a-kind big brother. Like many of you, a question that often crosses my mind is "what can I do to help?"

Charlie is surrounded by family and medical professionals who have one goal--to help him heal. He is the only boy I know with an entourage extensive enough to make famous types jealous. And it probably goes without saying that even with a good insurance plan, this kind of specialized care is expensive. Ah, here is a way to help. What better way to demonstrate that "It takes a village," and the village that exists across the country in support of Charlie is a powerful one. I invite you to make a donation to Help Charlie Heal. All donations (be they $10, 20, $50, or more) go into a savings fund designated for health care costs (deductibles, co-pays, out-of-network specialists, etc.) now, and in the future. I've listened to enough public radio pledge drives to believe that every bit counts and will go a long way. And the best part…we, our village, will reap the benefit of witnessing little Charlie continue to thrive!

Anne Engelking Smith (anklemama)

September 21, 2010

Urology Report

When Charlie was in the NICU, his doctor ran a routine renal ultrasound because Charlie wasn't voiding.  This scan revealed that Charlie, among his many other health issues, has a duplicate collecting system in his left kidney.  Turns out this is pretty common.  About 10 percent of people have an extra urine tube that connects their kidney to their bladder.  This extra system is refluxing urine from Charlie's bladder into his kidney which puts him at high risk for urinary tract infections.  Charlie has been on a low grade antibiotic for the past seven weeks, which is causing distress in the lower regions.  Basically, he's constipated because of the meds.  Yesterday, Charlie saw his urologist for a follow-up.  They did another ultrasound that showed some abnormal swelling at the mouth of these tubes which denotes that the reflux might be worse than we previously thought.  So, Charlie came home with a stronger dose of antibiotics and a promised return visit in three months for another renal ultrasound and a test called a Renal DMSA, which is a scope that will go up inside the tube looking for scar tissue and determine kidney functionality.  The doctor will make a decision at that time about how we'll proceed.  If he "grows out of it", she'll leave him be.  If the swelling is still present and the kidneys show scar tissue from infection, she'll do surgery to eliminate the extra collecting system.  The doctor said that with all of Charlie's other issues, he shouldn't have to expend extra energy dealing with infections.  The last thing Charlie's doctor ordered was a spinal ultrasound.  She noticed that his spine has a disc that is out of alignment and that his torso is very very long.  Charlie's bladder, kidneys and digestive tract are set lower in his body than other babies and she's concerned that he is a little out of proportion.  Charlie will see an infant chiropractor and also have a spinal ultrasound sometime in the following two weeks.  So now, in addition to his regularly scheduled visits with the pediatrician, Charlie's fall line up looks like this:

October - spinal ultrasound, chiropractic care, repeat sedated MRI, ECI physical therapy
November - repeat Echo Cardiogram, meet with Craniofacial surgeon, continue ECI
December - renal ultrasound, renal DMSA, continue ECI

Again, thank you for your continued support and good wishes.  Charlie is doing very well at home with his family and is now topping the scales at 12 pounds!  He looks great and is showing all sorts of wonderful connected signs of health, personality and chutzpah!

One Month Check-Up


Charlie saw his pediatrician today for a one month check-up. Charlie is still gaining weight very rapidly. He's almost 10 pounds (that's 3 1/2 pounds since birth) and 23 1/2 inches long (almost 3 inches since birth). The doctor visit was certainly a reality check for us - a reminder that every doctor we see is looking for signs and symptoms of his brain injury. And sometimes, they will find them. Charlie is going to start meeting with an occupational therapist through ECI next month. He is, as of this week, showing some physical weakness in his left arm and hand. He also keeps his left hand balled up in a fist most of the time. So we'll begin hosting therapists at our home once a month to make sure that Charlie is doing well. They'll teach us little exercises and games to play with Charlie with the goal of reminding him that he has a left arm.

I asked our doc about some serious spitting up, choking and gagging that Charlie is exhibiting. She put him on a drug to help him with what looks like acid reflux. She mentioned that one of Charlie's repetitive physical actions - he arches his back and neck a lot - is both a symptom of reflux and also an early physical sign of Cerebral Palsy. So, we'll treat the reflux and hopefully he'll stop arching backwards. When our doctor mentioned Cerebral Palsy, I must have gone a little pale, because she immediately began to reassure me about Charlie's progress and signs of his vigorous health, etc. She said that while Charlie is doing very well, its our job to be vigilant on his behalf. He is after all a brain injured stroke survivor who is also navigating a skull fusion, various kidney issues and some lingering heart abnormalities.

So these are our two realities. The first reality: Charlie is a beautiful baby who amazes us every day with his sweet face, his strong will and his refusal to accept his diagnosis. He has already brought us deep joy and eternal gratitude. We continue to move forward, assuming that in the long term, Charlie will be unaffected by his brain hemorrhage. The second reality: Charlie will be fighting this battle for years and years to come. There will never be a moment when a doctor says, "You don't have to worry about Charlie's stroke any more". We'll always be looking, analyzing, worrying.

Neurology Report


Charlie had his first appointment with his Neurologist today. The Doctor was great. He spent a while with us - asking good questions about Charlie, listening and looking over Charlie's short but complicated medical history. He was very personable and very thorough. After a physical exam, he said that as far as he can tell, Charlie seems unaffected by the stroke. Charlie shows complete symmetry of movement. He mentioned that while physical and mental symptoms of the stroke may still arise, his current status is good. He recommended that we NOT begin work with ECI (Early Childhood Intervention) because there is no current need. He said that as long as we keep engaging Charlie physically and emotionally (ie. massage and touch therapy, face time, singing, playing, audio and visual stimulation, etc.) we can help him to maintain and grow his range of motion ourselves without taking him to occupational therapy clinics. This of course could change if a left side weakness presents itself.

The Neurologist asked that we have a follow-up MRI in two months. He will then compare the picture of Charlie's 3 month-old brain with the MRI that was taken in the NICU showing the original bleed. If the MRI looks good and if Charlie remains seizure free between now and then, he'll consider weaning Charlie off of the Phenobarbital. As a side note - I have to say that the daily dosing of drugs is the most heinous thing about our day. I hate it. Charlie hates it. Don't misunderstand me - I am grateful that it keeps him out of woods for seizure activity, but Phenobarbital is a nasty barbiturate. After taking it, Charlie gets pretty loopy droopy- he can't maintain eye contact, his gaze darts quickly around the room, his breathing becomes a little labored, he chokes, he twitches, he gets dry mouth and dry eyes. So the sooner he can get off this drug, the better for us all. But all in all... it was a good appointment and we are thrilled to hear yet another doctor say that Charlie looks good and currently unaffected by his brain hemorrhage. Music to our ears!

Cardiology Report


Charlie met with his Cardiologist yesterday afternoon, where he had a Doppler Echo and an Echo cardiogram and an EKG and some other stuff... at the end of which the doctor said that overall, he looks good. He has a bunch of little things like a Hypoplastic aortic isthmus (narrowing of the aorta), an enlarged PFO (funky little hole in the atrial septum) and something called an Innocent Pulmonary Brand Murmur. All of these things were noted at his first cardiogram in the NICU and seem to be righting themselves without any intervention. The Doc says these things will most likely continue to heal and lessen until the heart looks "normal" again. He'll have another check up in four months. So, good news all around!

Home from the NICU


Impressed by his ability to eat, sleep, void and thrive, doctors have discharged Charlie from the NICU and against all odds, he is home - this very minute - sleeping soundly in his bassinet. Thank you to everyone who has held us close this week in prayer and thank you for all the time, energy and fairy dust you've given us. We feel it. Charlie feels it. And we are so grateful. Thank you.
In the coming weeks, Charlie will be meeting with his new entourage, which includes his pediatrician, neurologist, hematologist, craniofacial surgeon, cardiologist, urologist, occupational therapist, physical therapist and geneticist. All of these talented people will be organizing a course of treatment, therapy and recovery for Charlie in the months and years to come. Now that he is home the work can begin. Charlie has already shown that he is a fighter and we expect this miraculous momentum to grow and heal and lift him into the full and rich life that awaits him. Thank you again for all your amazing support.
All our love - The Greenmans

September 20, 2010

Charlie's Birth Story


Hello Dear Ones,

The long awaited, much anticipated Charles Baird Greenman has arrived! Jack and I welcomed Charlie into the world on the evening of August 4th! We had a perfect birth, everything went according to plan and our team of midwives (Carol Bunker CNM and Beverly Hook assisting) were stellar in every way. The birth was quick and Charlie arrived after only a few hours of labor. It was clear from the the moment Charlie arrived that he needed some help - he immediately began making a sing-song type grunt so our midwife administered some oxygen and suctioned his tummy to help him breathe. Charlie pinked up right away and even nursed in bed for a while! Carol discussed Charlie's obvious issues with Jack and I before we all decided to transport him to the NICU at Baylor Hospital in Downtown Dallas.

I have been waiting to contact you all until we had a clearer picture of what Charlie is up against... but it's looking like we might not get a clear picture for a while. So here is the news as it stands today: Charlie has many many obstacles in front of him. The big one is that he had a stroke in the womb - possibly as long ago as a week prior to delivery. The stroke is a brain hemorrhage on the right side which has reached the Thalamus - that big mother board at the back of the head. The bleeding is extensive and causing little seizures. Every doctor we talk to tells us scary things about what could happen and then finishes the conversation with, "But we really don't know how this will all manifest." He may have various physical difficulties and developmental problems - especially on the left side of his body. What will those be? No one can tell. Right now, we're trying to stop the bleeding with medication and platelet therapy. The good news is that he is breathing on his own and the seizures have stopped due to a drug they've put him on called Phenobarbital. He'll likely be on this drug for three to six months.

The second issue facing sweet Charlie, and probably related to the brain bleed, is that his two front skull bones prematurely fused together in the womb leaving the front fontanel (the soft spot) very small. There is a striking skull ridge that runs vertically down the front of his forehead. Surgery may be required... but again, we don't know. There are lots of other issues that have cropped up, which are separate of the stroke. We're trying to sort everything out and formulate a plan for his treatment and recovery. As you can imagine, we are extremely hopeful and have faith that this strong, amazing little baby will astonish us all with his come back. Baby brains are not like ours, they have the ability to regenerate cells. They are pliable, mysterious and their ability to heal and find new neuro-pathways is well beyond that of the adult brain. So, we hold onto that knowledge and find comfort in the love of our family and this amazing little man who has gifted us with his presence.

Please feel free to share this note with those that know us and are wondering how baby Charlie is doing. I know that you are keeping us in your prayers and thoughts. The more people we have thinking about our little Wonder Boy, the better.

All our love,
The Greenmans