Blog #13: Forgiveness

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I’ll warn you that this blog is definitely some raw material...full of blood, sweat and tears.  Not an easy subject for me to discuss, but it is a reality not only for families with chronically ill children, but for all families in search of that perfect school.  I think I have reached the point that it is necessary for me to purge this subject and this memory, from my system.  I do this in the name of forgiveness because this is who, what I need to forgive.  I think we all know that the road to any type of healing is a long road to forgiveness...it is often a circular reference in my opinion.

When Ethan began Kindergarten, I recall having to leave the hospital to attend his meet the teacher night.  I also recall just feeling kind of whimpery that night.  Whimpery is not something I would say I am very often, in fact I’m usually awkwardly hard-core, but honestly the stress had just kind of gotten to me.  I was so sad because I just knew that my heart just wasn’t there with poor little Ethan.  I felt like a shell going through the motions because that it the effect of an extended hospital stay when you finally get a moment out in the real-world.  I was only going to be in town for another week or so then Emilia, Isaac and I were going to be off to Cleveland, Ohio for a three month stay at the Cleveland Clinic.  My mind was wrapped in the stress of that fact, and of course, as I mentioned, we were in the midst of another week-long hospital stay that could suck the life out of anyone.

Now I will be the first to admit that Ethan was by no means over prepared for Kindergarten these days.  We had the most stressful last year of our lives and all of the grandioso ideas I had for preparing a kid for school just kept getting pushed to the side.  Emilia’s health was all over the place that year.  We were in and out of the hospital.  I was trying to stop working at a place I had been 10 years…which is a blog in and of itself.  The kid had been read to every night of his life, he had been adequately loved, and even attended an average pre-school..I just hoped it would be enough to get him through those months I would be gone and then we would work hard again.  The part that was difficult to reconcile was that Ethan really just is a sweet, sensitive kid.  I can only imagine all of the terrible ideas going about in his creative head as the majority of his family set off without him.  He had to have been so confused.

For the eight months preceding Ethan’s first Kindergarten class, Emilia was throwing up at least 5 times per day…when I say at least this means that there were many days that it was as many as ten times per day.  Just catching it, cleaning up, washing the clothes, the blankets, the carseat sometime daily was enough to make me crazy.   We did have a system and the boys were pretty well trained to listen for the sounds. They would run and retrieve blankets for us to catch “it”…get us what we needed to clean it up…sometimes they were just the alarm to let us know.  They were pretty amazing, but needless to say we were all in survival mode.  Once school started, he was doing fine.  He was very comfortably adjusted and had tons of friends…he loved it.  The homework was intense and I know Dave struggled those first three months, both of them adjusting to the new circumstances.  I think we both questioned whether the type of rigor was necessary for our happy, high-energy 5-year old and did struggle a bit to take it seriously.  He was definitely initially behind, but not by an insurmountable amount.

The last 3 months of that school year, his progress had been huge...the slope of his curve had started to skyrocket.  As a side note, although I am no education expert I will offer up a couple of observations.  As a teacher, look at the individual slopes of each of your kids.  Perhaps graphing kid’s progress is not something we do, however there is so much to be deduced from seeing a slope as opposed to just a bunch of numbers…ps everyone in the business world uses a graph to evaluate information.  I know his slope from the last 3 months of school had drastically shot up, which meant I felt pretty confident the direction he was going.  You can imagine my shock when his teacher essentially recommended that he might benefit from another year of kindergarten.  Really?  He was reading?  I thought he was doing awesome in math??  He wasn’t overwhelmed.  He doesn’t have any social issues…what is the deal??

I met with an administrator to discuss what our options were.  This administrator was armed with every difficult task the 1^st graders would be asked to do…I guess to instill some fear in to me.  As a rookie, unaware of what 1^st graders could really do or what a normal school would ask, have to admit to being a little shocked and asked myself could he really do that next year.  Ironically there is nothing that she threw at me that isn’t an expectation of the boy’s current school’s first grade classroom.  It is easy to create fear in the inexperienced, luckily you are only inexperienced the first time around J.  After the display of premier 1^st grade expectations I said, “You do realize that my other son, my daughter and I were all gone across the country at a hospital while Ethan was here by himself with his dad for the first 3 months of school?”  There was even a point that I just started to cry.  This is hard for me to admit because it really doesn’t happen that often, but my stress level had pretty much maxed out and I wasn’t thinking all that clearly.   To their credit, after my blubbering she eventually said, "we’ll do whatever you want us to do.  If you think he will be fine, we will trust you."  Like I said, I was obsessed with his slope of progress..that should have been enough for me to be confident enough to say, he will be fine.  But I let the bitterness fester in me for a few days.  I reanalyzed the way in which I felt like she arrogantly displayed all the difficult work he was going to be expected to do in 1^st grade.  I also did some serious soul searching and a wise person said to me, “why do you think you need a school to max your kid out?  You don’t need that.  You can and will encourage your child to grow in areas he is interested in…you can’t do that when a school asks the max.” 

Well, there it was.  I had to let my own failures go…not having him adequately prepared for what I knew to be a rigorous kindergarten, the sadness I felt for having to leave him for those months when he probably really needed the rest of us more at that point than ever before.  I recall thinking to myself that a school that prides itself on instilling truth, beauty and goodness can’t lack the awe and respect for children that endure some tough circumstances.  If we are honest with ourselves, I think we know that it is these type of life experiences that foster those qualities..a school and it’s rigor will only do so much.  And the kid (Ethan) does have heart, more heart and fire and passion than I ever had. 

The irony is that years ago I set out to write a book on how you instill truth, beauty and goodness into young girls these days.  It was in writing this book that I actually ran across this school.  Ironically it is my sons who will learn the lessons of truth, beauty and goodness through Emilia’s life..it won’t be from a school, it won’t even be from me.   What I mean to come to terms with through this commentary is forgiveness.  Thinking of that year brings some serious strain to my heart, and it is time for me not to care anymore and to just forgive all the people involved.  After all, he is doing awesome.  He is light years ahead in his school work now, and he still has that fire and passion to boot.

I see these people enduring similar struggles as our family, some far worse.  I know they worry about whether they can make adequate money to keep their families comfortable or just provide.  I know they worry about the time they can spend with their children, their parents, friends, etc, whether it is quality.  I have to say that all you need to do is read the majority of “success” stories across our history, the Bible, any presidential biography or famous well-respected political figure…and they endured like no other.  In fact I hear the statistic for how many US presidents lost a parent at a very young age is incredibly high.  Greatness often arises out of the ashes.  Let’s not let ourselves feel guilty about teaching our children to endure and value suffering for another’s sake and let’s not feel guilty about the trials we may have to let them endure, whatever that thorn may be…it will be what inevitably makes he/she great.  After all, it has been said that if St. Paul had not endured “the thorn in his flesh”, he may have been too busy to sit down and write Romans….and what a loss that would have been.

On a side-note, we started Emilia on her heart medications today to help treat the pulmonary hypertension.  It is scarier than I thought.  We really don’t know what is going to happen…the side-effects could be painful (headaches, nausea, vomiting, etc), but they also suspect that it could cause her to have some other issues that would require another medication.  Needless to say I am supposed to be monitoring everything.  I hardly let her out of my sight today and so far so good.  We could use your prayers as we continue to increase the dosage over the next couple of weeks and monitor its impacts.  I probably won't write again until after Christmas.  We hope you have a wonderful Christmas, great time with family and friends, lots of thankfulness and of course an abundance forgiveness.  Thanks for reading and for all of your support!

Blog #12: Birth-Day!

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We celebrated Emilia's 3rd birthday last week so I am going to go with the obvious and discuss some reflections on her birth-day.  Here is a picture we took the morning Emilia was born, in fact the picture was taken right before we left for the hospital.  Am loving how nice and swollen I was :)

I do recall after taking this picture thinking to myself that it would capture a "life before" moment, knowing that life would never be the same afterwards.  Now granted it is true every time you go to the hospital to bring another child into this world.  That eerie feeling you have when they let you leave the hospital with this tiny infant.  That first night home from the hospital when you begin to realize that you don't actually know what you are doing :).  But having known for 4 months that Emilia already had a very rare problem with her lungs in utero, there was just something different about this trip to the hospital.

We were scheduled for a repeat c-section.  For the record, I found the scheduled c-section much more awkward than the emergency one.  There is just something so very unnatural about being able to say, "Wow, I will have a new baby in exactly 7 minutes."  Plus it is very unnerving and I always found myself just so anxious for the process to begin so that you would know that all is okay.  That particular sense was really elevated with Emilia.  I really just wanted to know if she was okay.  It was a quick "retrieval" process and although I do recall seeing her face and noticing how small she appeared, the first thing I recall was the doctor saying, "Her head is large, someone should get an x-ray of her head."  Now before you are annoyed with our doctor's blunt commentary, he is a very dear friend and we love him and he would only say such thing because he wanted to make sure Emilia gets the best care.  In spite of her being ever so teeny-tiny (with a large head), she passed the simple tests do they always do and they sent us off to recovery together.

While I was trying to feed her, they kept trying to hook her up to get her oxygen levels, bp, etc.  The oxygen alarm just kept going off, but they kept just saying it wasn't getting a good reading.  We were very uncomfortable because we thought there was at least a decent chance she might have some oxygen problems, but it just kept being dismissed.  After about an hour, a very diligent and considerate nurse came in again and said that she was with us, there might just be something wrong and she put in an order for a doctor to come by.  It took some time..which of course was distressing, and the doctor that came spent about 3 minutes with us and said it can be normal to have some intermittent oxygen levels after a c-section birth (which is true) and we will just have to wait and see.  Wait and see...are these people nuts!  Don't you always wonder how they would feel if someone told them that??  I know they have to say it because I'm sure it does work itself out in most cases...but it sure does feel terrible to hear that phrase, "Wait and see."  On a side note, I later got the bill for this specific doctor visit and I considered writing "wait and see" on it.  PS - Saint Joseph's nurses have truly been our favorites throughout our hospital stays.

After that doctor left, that same diligent nurse said she was as uncomfortable as we were with that approach, especially in light of her size and she said she was going to work some magic to get a lung x-ray.  I don't recall how long it took, but I know that it was the last I saw of her for 24 hours when they took her for the x-ray.  She had a spontaneous pnuemothorax (essentially a collapsed lung) and her and Dave were off to the NICU.  I was stuck in recovery because of the c-section.  My job was apparently to recover and pump to supply the milk.  I'm pretty sure I was out of bed walking around by midnight that day so I could get the go ahead to head up to the NICU in the morning.  Dave was so comforted by the NICU because he just wanted to know that someone was watching her all of the time and that all types of care could be administered very quickly.  They put the first (of many) NG tubes down her nose so they could feed her so that she wouldn't scream and damage her lungs, and they hooked her up to some oxygen.

Some times I hate and some times I love smart phones and the ability to google search from anywhere.  I spent a fair amount of time that first night trying to understand if there was some sort of connection between these two pretty rare lung findings (one in utero and one at birth).  I honestly couldn't find a connection.  It was hard to find anything, including research papers, that mentioned them both...nothing was popping out to explain what was going on.  I really just wanted to understand what we should be looking for next, but google can only be so good at deciphering rare medical conditions on the spot (aka garbage in, garbage out). This is the reason I love teaching hospitals...the next day Dave and I were both able to sit in on the discussion between the lead doctor (for lack of a better term) in the NICU and a group of medical students as they discussed Emilia's case.  The doctor eventually asked the students what I had already been researching, "So do you think there is any connection between the unilateral pleural effusion in utero and spontaneous pnuemothorax at birth?"  A very eager student immediately raised his hand and said he had researched last night and read a tremendous amount about them both and he determined there is no connection.  The doctor said in sort of game show style, "Yoooouuuu'rrrrrreeeee wrong!  I don't care what your medical text books say, there will be a connection between the two." 

How amazing to be present for this conversation.  Hence began our research campaign to find a connection (and my love for mice and their willingness to endure endless tests :).  I was assured there had to be something underlying, and we needed to know what it was because only that could tell us what to expect next!  Emilia spent a few days in the NICU waiting for her lungs to heal and oxygen normalize then it was off to a continued care nursery to monitor how slow she was eating.  At this point they were feeding her the milk I supplied through a bottle and would put whatever she didn't drink through her NG tube.  NICU nurses are beyond experts at getting babies to eat what they need to so she was doing fine there.  It was a little more complicated in the continued care nursery, and although she started eating the volume they wanted her to after a few days, it was way slower than they were comfortable with.  We (being such rookies) insisted we were experts and argued that it had to be hard for her to eat with that damn tube up her nose and down her throat.  We wanted them to remove it so we could see if she would do better without it, but they just weren't comfortable with that.  Fortunately for us, Emilia was on our team.  She yanked it out in the middle of the night and the night nurse just went with it and surprisingly she ate everything they threw at her.  As a side note, when you stay in the hospital after a normal birth and you breast feed...the babies eat very little.  They are so tired.  In fact you leave the hospital thinking that breast feeding a baby is going to be quite easy because it really isn't that often (boy does that change once you are home :).  In this situation, when the hospital controls the health and well-being of your child, they are put on a strict feeding schedule and volume.  Boy was this unnerving, and although hindsight is 20/20 and we would obviously approach this stay differently now, at the time we just did not agree that she needed to be eating the type of numbers they were throwing around.

The next day we fought quite hard with that same "game show" doctor from the NICU to get her released.  At one point he even raised his voice at us and said, "If we don't get this feeding thing right, you will be back here in a month!"  (For those of you that don't know, he was right...we were back in the hospital in a month).  We kept pushing and pushing and finally he submitted.  We ended our time together with asking him, "What do we do now?"  (We were meaning to ask, are there other doctors we should be seeing, what should we be looking for, etc).  He was such a quirky man (don't get me wrong, we loved this about him) and he said, "I don't know.  Take your child home and love her.  She probably has some type of condition.  Maybe she'll need some special education, who knows."  Wowsers was that more information than we wanted...but we appreciated his honest commentary.

Off to home we went...only to discover that it would be nearly 8 months before Emilia would sleep more than 20 minutes consecutively at night.  Oh my gosh, what was going on??!!  I have filled in some of the holes already and I still have some more but I will let you off the hook with this blog.  The last 3 years have been some of the most exhausting and yet most fulfilling of times.  We wouldn't change a thing about her...she is just perfect the way that she is.  And for the record, I don't think she is going to need any special education.  Here is commentary from a discussion we had this weekend (yes, she just turned 3 years old.)

Boys:  "Why do we have to clean our room?" Me: "Because there are people coming over on Sunday for a party to help raise money for the doctors that are trying to help Emilia."  Emilia: "What did you say!?"  Me:  "There are people coming over on Sunday for a party to help raise money for the doctors that are trying to help you."  Emilia:  "I don't want to raise any money for those doctors.  I don't want to help them.  All they want to do is give me shots!"  See what I mean, nothing gets by this girl!

Blog #11: G-tubes and Bikes

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For Emilia's first birthday (11/29/11) we had a soup puree party.  We had just gotten back from spending 3 months in Cleveland at the Cleveland Clinic and she had been occasionally eating pureed foods by mouth in decent amounts.  As many of you are aware, she had an NG tube placed at 2 months and a G-tube at 8 months, so I would be making a major understatement if I said eating by mouth has been "complicated".  I don't think I realized just how complicated it was until experiencing just how easy eating can be with our 4th child Gigi (more to come on this).  These next two pics from her first birthday party are some of my favorites.

Here she is before we tried to feed the soups to her.  You should notice the 3-1oz cups of the different soups.  At the feeding clinic, you had to measure all volumes of food so we could keep track of calories..a time consuming task that we still essentially do but I have gotten much better at estimating after the last few years.  Like I referenced above, it is amazing how easy it is to feed a child if he/she actually likes to eat.  With Emilia's eating, we honestly feel like we are slowly peeling back each layer of an onion until we finally arrive at a state in which she may actually enjoy eating.

 Aha, and here is a pic right after we tried to get her to eat the soups :).  Doesn't the face say it all...she looks like we are trying to cause some serious harm to her.  Now back to the onion.  Here are the layers we have either scientifically solved for or divinely discovered or simply arrived at by sheer LUCK in chronological order:  Aspiration (milk going into her lungs), volume sensitivity, rate (how quickly you pump formula into her tube), day-time versus overnight volumes, texture sensitivities, caloric needs (versus doctor wants), numerous bouts of dehydration, gluten sensitivity (celiac), lactose (we are just limiting not eliminating this) and little to no appetite (this may never be solved, but we are really in a major testing phase of this right now)..wowsers, and I always thought babies/kids just ate when they were hungry.  Each of these was solved with trial and error, there was/is no easy answer.

Getting back to Gigi and food/drink.  The child (10-months old now) will eat or drink just about everything she can get her hands on.  For instance, I don't think we ever gave juice to our other 3 children until they were 2+ so we could keep their milk intake high.  Gigi will find any random juice box and chug it down before you can even find her.  Sometimes I watch her chug...all ~7oz in less than a minute, then I think about how many hours it takes to get 7oz of any type of liquid into Emilia.  Good news is that we noticed that Emilia has experienced an interest in juice boxes (she would never drink juice before) because she watched her sister chug them down.  Needless to say, both girls are now drinking at least 1 (and an occasional 2) juice boxes a day.  Poor Gigi (aka the fourth child)..we will no doubt ruin her teeth by allowing this, but have to be honest with you that if by chance we can get Emilia to drink an entire juice box (a feat I would have previously said would require a miracle) by allowing Gigi this treat, we are going to have to run with it at this stage.

I am slightly embarrassed to admit this next crazy accommodation I have made to get calories in Emilia.  After learning at the NIH that Emilia doesn't seem to have major blood sugar issues at this point (although she does have low blood sugar) and that her caloric needs appear to be closer to 80% of age appropriate, we decided to take on an aggressive change to her diet.  We stopped giving her any formula through her tube during the day (just give her water or pedialyte) and decided to see if she would develop any sort of appetite.  We still feed her formula through her tube all night long but we essentially cut her calories in half.  It took more than a week before I saw any hint of an appetite, and even at that it was minimal.  She has definitely enjoyed not having to get the formula during the day.  So much so that now that I have added back just a couple of day-time formula feeds (she just wasn't making up enough calories by mouth), she is REALLY making me work for them.  It started with her telling me that I could put the milk in her tube (we do this via a 2oz syringe) only if I she was able to run and I chased her while doing it.  Some of you that are familiar with G-tubes might be able to imagine how difficult this is.  One, I have to hunch over to reach her cord and put the syringe in.  Then, I have to run within 6 inches of her as she mazes throughout the kitchen, family room, an occasionally run outside without pulling the syringe out (and worse would be her cord or tube), all while pushing down on the syringe so that it actually goes into her stomach but not too fast to make her throw-up.  This is very difficult, and let's just say that the one time she made Dave do it over the weekend, he wasn't terribly pleased :).  She has escalated it now.  Yesterday her new rule was that she would only permit the formula if I chased her on her bike.  At first I thought she was kidding, but then she went and got on her bike and said, "I'm ready".  She is super fast on her little 3-wheeler/ big wheel...and let's just say that if she keeps up this requirement, I may just be ready for the half-marathon long before I thought I would be.  It is a true test of my agility/ability/sanity/will/etc....the kid is such a crack up.

Dealing with these feeding issues is where I have really learned to appreciate subtleties....something you are just thankful for one bite or one sip.  In life, there are so many times that we want to check something off a list, and it is usually something substantial so it is these subtle successes that we just overlook.  Being a food/meal LOVER, when Emilia first got her G-tube, I remember thinking how sad life would be if you couldn't enjoy a meal with a friend or a starbucks break from work (oh how I miss the starbucks at the AZ Center)...food is so social.  The food table is where/when we learn to communicate, to gather and sort out the day, where most people give thanks and often say the only prayer they may pray that day.  We have done everything we can to be sure that Emilia experiences all of this "living" that takes place at the table, but it has not been easy.  To end on a funny note, she loves to say the prayer before dinner and this is generally how it goes, "I am thankful for momma, dadda, ju-ju (Julia), molly (these are her cousins), gianna sofia, and then usually picks one brother to name."  This usually makes the one she leaves off pretty angry and we can't help but assume that she is doing it on purpose because she rotates which one she leaves off but always says all of the other names.  Something tells me she is not far from normal in many regards :)..love that girl's feistiness.

Blog #10: Progress in New York

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<---- Brothers and sister(s) reunited!

Well we have been home for a week, but I must admit to still trying to catch up and get things back to normal, hence my delay in summarizing our New York adventures.  I'll just start where I left off, now isn't that novel :).  One of the last things the doctors at the National Institute of Health (NIH) said to us was, "The best advice we can give you right now is that you need to go see the best cardiologist you can find that understands Emilia's condition."  Luckily, we had already arranged that visit knowing that her heart/lung problems are our most pressing issue right now.  So we were off to New York.

Small diversion...I think this is a good time to note some general observations I made over the two weeks.  The first I already alluded to when I noted that the NIH was somewhat surprisingly not the Taj Mahal of medical institutions.  Well, neither was the children's hospital at Columbia.  I know they are just older facilities than us west coasters are accustomed to, but I also found some of their practices to be surprising.  For instance, sharing rooms was the norm at both facilities.  Their doctors seemed much more like "normal" people than I experienced at many of the other facilities (this is a compliment :).  And rather than feeling like we were trapped in a prison with little control over our destiny (and child's well-being), everyone really treated us like we knew what we were doing and gave us so much flexibility.  I think what I learned from this experience is that quality of care isn't always correlated with my personal comfort, bells and whistles and fancy "anything" (including doctors).  And yes, I get that resources are generally finite and if you spend your money on your facilities and fancy autonomous systems, you may not have enough to hire the right people.  I definitely have an even grander appreciation for the right people.

Here is what we learned in New York.  Her lung tissue looks very similar to a handful of other patients that they have seen with a similar genetic error, but she is in the very early stages and they suspect that her tissue will get progressively worse as the other patient's had.  They were most fascinated to see a person at this early stage.  Generally, patients with pulmonary hypertension go see a doctor because they are symptomatic.  They are running out of breathe, tiring easily, etc.  We can't say definitively that she has any of these symptoms at all.  She certainly is more reserved, does tire more easily than the boys (but they are crazy)...but as many of you know, she is generally pretty high-energy.  They are hoping to find out if early treatment will help delay some of the progressiveness of the disease.  In case you don't know, the drug that is most commonly used to treat this disorder is viagra...yes, it was actually developed to treat pulmonary hypertension but just happen to have this interesting side effect that I am certain has made the pharmaceutical company far more money :).

There were some other interesting findings:  her heart pressures responded most positively to oxygen, and for part of my conversation with the doctor she was really contemplating putting her on oxygen.  Although this would be far from the worst thing that could happen, I did find the idea pretty daunting at this point.  Even if it were just at night.  She is already hooked up to a G-tube pump all night.  She is a horrible sleeper..wowsers, another cord??  Anyhow, the doctor eventually decided we would skip the oxygen for now.  They also did what they called a "fluid challenge" during the heart cath.  She did really bad with this and all of her numbers worsened.  To be honest, I am still trying to understand what this means.  Essentially all they did was very quickly put ~8oz through her IV and measure what her heart does with it.  The doctor initially suggested she take a "water pill" to resolve this particular issue.  But after discussing how low her fluid volume intake is right now (we are lucky to get in the age appropriate daily recommended amount), she decided to hold off on the water pill until we can get her fluid levels up higher (that will require a miracle).

We also learned, as I angrily posted on facebook that she is lactose intolerant, her intestines "just don't look right"...unsure of what this means but hoping to find out soon, and we learned that the long-term solution to her pulmonary hypertension may just be a lung transplant...wowsers, I had no idea that if you have a genetic deficiency like hers that a lung transplant would hold up (meaning not be over-run by the same error).  This was good news.  In fact they described that the patients they treated with the similar error went through all of the various hypertension treatments on the market.  They all worked for a while then they transitioned to another level of treatment and a few of them received lung transplants.  Apparently we were in the right place.

Some of the more entertaining moments were: riding the New York City bus over 100 blocks for at least an hour and a half to get into mid-town...don't ask me why we took the bus as opposed to the Subway...we are idiots.  Watching Emilia be completely alert and respond to numerous questions in the operating room despite the fact that they had given her medicine that was suppose to make her loopy and fall asleep??  When we had to the stay night after the heart cath, we entered our shared room only to see the most frightened looks you can imagine on a mother and father of a very small child (maybe a few months old).  You could see the fear once they realized they had to share a room...and thus internalized that they are suppose to somehow miraculously keep their child from screaming all night.  I must say if felt quite good to be able to say to them, "Please do not worry about us.  We have been in your shoes.  It will not bother me if your baby screams all night.  Do not worry about us."  I must admit to feeling quite prideful in their relief.  St. Patrick's Cathedral.  The Milk Bar.  Trick-or-treating in the City...

The things I might try hard to forget:  the plane rides, listening to Emilia tell us over and over again, "I want to stay at the "hotel", I want to stay at the "hotel"".  She's a smart girl and knew it was her safest place.  Driving in New York.  Letting Gigi and Dave walk to the apartment 12 blocks away from the hospital at 10 pm.  Being exhausted nearly everyday.  I wouldn't tend to say I am faint of heart.  I generally think I am pretty tough, but those two weeks were some of the hardest and most mentally, physically and emotionally draining thus far.  Not sure we would plan a double-visit like we did this time, next year...unless I successfully forget about the exhaustion.

One thing I didn't explain quite yet is how we came to know about her pulmonary hypertension at such an early time.  We have actually known since March of 2012 when she was just about 15 months old.  It was a miraculous chain of events that led to its discovery that I will have to explain later, perhaps next week.  I have always believed that it was going to be key to both her diagnosis and her over all well-being since it took such a curious set of circumstances to discover it....more to come later.  Thanks for taking the time read about our adventures.  We really appreciate your love, support and prayers.

Blog #9: The NIH...Finally!

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<---Emilia at the NIH Children's Inn playgound :)

I really am sorry for the delay in writing up our experiences at the National Institute of Health.  I have no excuses other than this has honestly been two of the most exhausting weeks of my life.  We are still in New York now and sadly Dave had to just take Emilia back up to the hospital at Columbia to give some pre-procedure blood.  Gigi and Aunt Liz (hanging with us for a few days in New York) are napping...so I have no more excuses, time to write :).

I know I gave you some of my initial fears and concerns upon our arrival at the NIH, but we were able to glean some really good information from the trip.  First of all, diabetes or insulin resistance and liver disease is very common with kids that fit her profile so they did a thorough glucose test and metabolic work-up.  We were anxious to see her glucose test results because we think she often has signs of low blood sugar..where she just goes crazy if she is low on calories.  The test was a a bit of a nightmare for a little one.  Consisted of at least 7 different blood draws at different intervals.  Her IV nearly stopped giving blood about half way through so the blood would just barely trickle out of her veins...which made us feel even worse about all of it.  They had to re-do some of the blood draws the next day because it had taken so long to get the blood that it had clotted before the pathologists could even do their magic :(.  The good news is that she is not insulin resistant, but rather does have lower blood sugars, but fortunately still on the normal side of things.  The only blood work that even resulted in any type of concern was some factors that measure her liver and kidney health.  They are a bit out of the norm, but the kind of things we will check again in another six-month to reevaluate.  The doctors were actually quite pleasantly surprised.  So much so that they really would not label her particular condition as lipodystrophy because she just doesn't fit the metabolic mold, but rather they believe (as we have suspected) that she has an atypical progeria syndrome (she just has a genetic error that has not previously been associated with this condition.)

Have to admit to being a little surprised at the fact that we might actually have a definitive diagnosis.  After all, that's really been what we have been hunting for the last three years.  Part of me wanted to dismiss it and ask to speak to another set of professionals that specialize in atypical progeria.  However, a doctor that has been at the NIH since before I was born was there to confirm this conversation, and something tells me he knows what he is seeing, when he sees it.  Also, funny enough, when we asked the question of whether we should speak with someone at the NIH on the subject of atypical progeria, they quickly replied, "We can point you to someone, but it is really not necessary because you have already seen the best expert in the world on this diagnosis in Dallas.  There are only a few other doctors in Europe that might compare to him but he has seen twice as many patients like Emilia as they have."  Hum, wow...that's amazing and that comment got me really reflecting on the story of how we ended up in Dallas last year despite not really knowing what was going on.

Early on, a couple of doctors kept throwing around the term progeria.  At one point we even tested the specific gene that causes it and it came back normal.  It bothered me that after the test people kept using the term.  From everything I had read there is only one specific genetic mutation that results in classic progeria and we had already checked that.  I had never heard the phrase "atypical" or in fact not even thought of "early-aging syndrome".  As we all know, Google is only as good as the information you put in...and those terms just never came to mind.  There were all of these conditions that I was just over-looking in my research.  Finally, at an appointment with a whole team of doctors at PCH, a geneticist that we had not previously met looked me straight in the eyes and said I am certain your daughter has some sort of early-aging syndrome.  Aha, the term I needed!  I remember leaving that appointment wondering what I was suppose to feel.  They asked me before I left if I needed to speak with a family counselor, I didn't mean to but I actually laughed and wondered why they would ask that question...did I look like I needed some "help"?  That question did help me to really take her comment and her sincerity seriously.

I spent the next 24 hours researching "early-aging syndromes" and came upon this wealth of information that I had previously completely missed.  The hardest part of those next 24 hours was convincing Dave that this was the right path.  He was not able to make it to the appointment so didn't have quite the same insights/experiences.  He finally decided he needed a break from my sales pitch and decided he was going to take the boys to the park.  I decided to take a break from my research and turned the tv on..flipped through to essentially find nothing and left it on the Discovery Channel.  Ironically, it was showing the program 'Mystery Diagnosis'.  As you can probably guess, they were profiling a young boy from England that was diagnosed with atypical progeria by Dr. Garg in Dallas.  I immediately pulled up nearly all of the research papers written by Dr. Garg and I couldn't believe it...we needed to see this guy.  After Dave returned I was pretty well stocked with some new ammunition :).  At first he sort of dismissed the idea of the doctor because he was the type to go on television.  So what happened next couldn't have been more surprising.  The tv was still on and another Mystery Diagnosis program was playing.  All of a sudden he looked over my shoulder and said, "Isn't that Dr. Moran?" (A geneticist we had already seen in Cleveland that we knew was very well respected in her profession (aka not the type to go searching for patients on tv.)  It was her.  That was all that it took, he said if I thought this was the guy we needed to see, I should email him and see what he says.

I spent the next six hours, seriously, reading more of his research reports and carefully crafting a three-four sentence email that I thought was exactly enough information without over-whelming him and causing him to lose interest and attached a medical history summary and a few pics.  I guess I considered it a success because by the next morning he had already emailed me back and said he wanted to see her :).  We planned a visit a few months out during the boys' fall break 2012.  To make a long story short, within 5 minutes of being there he said he was as certain as he could be about things, she has a neonatal progeroid syndrome.  So here we are a year later.  The genetic sequencing essentially confirmed her pattern of symptoms and the likelihood that she could have this type of condition.  And a doctor from the NIH, one of the most esteemed medical institutions in the world says to us, "I think you can stop searching for what she has, I think we know and start just focusing on treatment for each symptom as it arises."  Wow, that is amazing if we really sit down and think about it....no longer worry about what her diagnosis is??  Maybe a little less anti-climactic because instead of just soaking it up and enjoying some relief, I couldn't help but ask myself if this is a better or worse diagnosis than we hoped for??  I think that if we are really honest with ourselves, we'd have to just say it is what it is.  By nature we are all atypical, so what does it matter.  Something tells me that this journey was by no means a series of coincidences....

As for the rest of the DC/NIH trip, lots more tests and good information that we will repeat each year.  As for entertainment, we were able to get out of the NIH compound (and it really is a secure compound) a couple of times.  As for excitement, we got to watch the Presidential motorcade pass near the White House in rush hour traffic.  Wow was that shocking and boy did I feel sorry for all of those cars that were trapped for a good 45 mins while they secured the area.  Did you know that the motorcade includes multiple swat team vans and an ambulance?  I had no idea it was SOOOO long.  We also saw Dr. Francis Collins (the head of the NIH).  Sadly, we missed being able to talk to him by about 10 steps.  Coming back from Bethesda one evening I looked ahead and saw him.  As many of you know I have read nearly all of his books so I knew exactly what he looked like.  We kept walking but he turned just before we got close enough to be obnoxious groupies.  I considered yelling out his name, but my manners got the best of me and let him walk in peace to his car.  His personal research over the years was in Progeria so it would have been nice to at least visit for a second but it just wasn't meant to be :(.  We also purchased Redskins and Baltimore footballs for the boys.  They made us promise we would bring them back a football from each stadium we would be near...and of course Ethan knew that was the redskins, baltimore, jets and giants.  Two more to go!

Blog #8: The National Institute of Health (NIH) and Death to Self

Well, we have made it to the Bethesda, Maryland and the NIH.  One obviously sets expectations for a place of this nature, after all it is the temple, mecca, st. peters, the holy grail (you get it) of complicated medicine.  This is not a place you get to come over night, but it is the first place you want to come when you realize you have a child with a rare disorder.  For all of the visions of splendor we probably had in mind, and at the risk of sounding arrogant, I must say that our initial reaction is that this is a well-used hospital (and that is not necessarily a bad thing.)  There are some perks different from the other stale, old hospitals we have found ourselves in.  For instance, you don't want to deal with the crowds and lines of admission in the morning, no problem...feel free to check in at any hour of the day or night.  We went over about 8pm last night (remember the girls were still 3 hours behind in time last night).  We filled out all of the lengthy paperwork and they showed us our room.  This is when reality set in.  I think Dave could see in my eyes that I thought the walls were closing in, and the first thing he said was, "I think it just set in what a challenge these next couple of weeks are going to be."  Needless to say, Emilia is no dummy.  You could tell her attitude began to change as soon as she saw the lobby...she knew why we were there :(.  You probably could have seen Dave's and my heart skip beats when we realized that you have to share a room with another sick child...wow, this is reality.  Anyhow, the other perk is that the nurses know that if you have made it this far, you do not likely need to be schooled, in fact they trust that you know what is best for your child.  Last night, the nurse asked us if we needed anything while we sat pretty well stunned in the room, and I couldn't help but ask if we really needed her to stay the night in the hospital.  After all, they also have a room for us at what they call "The Children's Inn"...their version of a Ronald McDonald House right next to the hospital.  Much to our surprise she said she would ask a doctor.  She came back 5 mins later and gave us a get out of jail free card for the night...wow was this liberating.  I don't know that we could have made it last night...everyone was so exhausted.

So here we are, all ready to head over to the hospital for the official start this morning, waiting for the girls to wake up.  I would be lying if I said it was a good night.  I should have warned you that by writing this blog these next couple of weeks in real-time you may get some of that raw emotion that I try to avoid :(.  In fact, I'm going to leave you with a song that really speaks to how I feel about staying in a hospital with a small child.  It is (the song and the experience) about a death to self...sorry to be so dramatic but this what I keep hearing over and over in my head this morning, death to self.  The song (in fact the whole cd is beautiful), click here and please listen:  http://www.youtube.com/watch?v=e5xEYgGr6ms

Blog #7: We Are Actually Running, I Promise!

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A number of people have asked how the training for the race is going, so I thought I would start this blog with an update on our training.  I have to admit that I have little to complain about when it comes to my training path.  We live in the Lakes in Tempe and it really is quite beautiful to run around the lake this time of year.  People are out cruising around in their pontoon boats sipping wine…sunset hits the water, man do I love October in AZ.  I can officially say that I can comfortably run about 3 miles because Dave made me run the Maggie’s Place 5K last weekend J.

As for Dave, I think we all know that he could go out and run a half-marathon without any training.  I am having to convince him he can do this.  He often rides his bike to and from work (~15 miles each direction).  He could out-play anyone in a marathon tennis match, soccer game, etc, etc.  But running is not his favorite thing to do.  Plus, his reconstructed ankle is really giving him some problems.  Last weekend he commented that he just didn’t know if his ankle could handle the wear and tear of the half-marathon training.  I commented, as I stated above, “you have to be the only person I know that could just go out and run the half-marathon without any formal training.”  I suggested he swim more regularly and keep biking and then just run the race the day of.  I think he has bought off on this and I can assure you that our ice maker is thankfulJ.

In other updates, the boys and I have been reading CS Lewis, “The Magician’s Nephew” for a few weeks now and it cracks me up every night.  Lewis has an amazing skill of ending each chapter at a point that begs for you to read more.  The boys get so angry when I stop at the end of a chapter, saying “what happened?!  keep reading!”.  I have even caught Ethan reading ahead.  The book really is amazing..and as an adult, the imagery and desire to really think deeply through his message and whether his vision could be reality has really been quite fun and mentally exhausting.  The boys seem to be a bit grumpier than usual lately, especially Ethan.  They know that we are leaving for the hospital tour of duty on Monday for a few weeks and I do worry a bit that they feel just a little abandoned.  Like I said, especially Ethan.  When he started kindergarten a few years back, Isaac, Emilia and I left and spent three months at the Cleveland Clinic in Ohio, and I do think he felt like he was forgotten…poor little guy, he definitely is our sensitive one.

There are a couple of minor hiccups we have discovered this week with our pending trip to the National Institute of Health and the hospital at Columbia.  For one, we realized yesterday that Dave and Emilia are on one flight, and Gigi and I are on another.  We didn’t plan it that way.  In fact, we were able to actually tell the NIH which flight to purchase for Dave and Emilia, but sadly we mistakenly told them the wrong flightJ.  Fortunately we leave and arrive at very similar times, but unfortunately we arrive at totally different airports more than an hour apart from each other, whoops.  Here’s hoping the NIH shuttle service hasn’t been furloughed at both airports!  

The second hiccup’s impact is unknown at this point.  Did you know that it is essentially illegal to rent out your apartment in New York City for short-term leases (like the week we currently have booked with a New Yorker)?  Yeah, me neither.  There are some cases that it is legal, and it may be the case that the person we have leased from is following those rules, but we really don’t know.  From everything I read, it doesn’t seem like NY enforces the law unless someone is a large property offender, but the comments chastise you for making living in New York more expensive for natives because you are encouraging the use of these properties for short-term leases.  Here’s hoping our VRBO rental is a legal gig and is as cool as the pictures….

Today the TGen Center for Rare Childhood Diseases had their official Grand Opening celebration.  Emilia, Gigi and I attended (with the help of Kelly Carrizosa).  My highlight was getting to meet “Princess Isabelle” as Emilia refers to her.  She is the actual researcher that discovered Emilia’s genetic mutation.  She is still doing more research on her gene for potential treatment, absolutely amazing!  Can’t help but be hopeful… such a refreshing conversation.  Kelly took the pic at the top of this page at the grand opening…Emilia posing with the official ribbon cutting scissors, too funny.

This time next week we will be at the NIH.  Will likely do a few more updates throughout the week, shorter in length to keep you all abreast.  We appreciate your prayers for Emilia as she endures additional pricks and pokes over the next few weeks, for wisdom for her doctors, and for the boys as they stay behind (with Grandma Carole Crowell, thank you, thank you).

Blog #6: Batman, Batcaves, Batmobiles, Oh My!

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I saved this blog for today so I could highlight our latest adventure.  Last night, the whole family and a group of our friends had the opportunity to visit a real-life replica of the old-school batman and robin batcave, complete with Bruce Wayne’s office, all the aged electronics that you could possibly want to play with, and the highlight, a collection of real batmobiles.  Everyone even got to ride and/or drive the batmobile and the original batman motorcycle with side-cart.  From what I hear, our boys just kept yelling from the side-cart, “Go faster, Go faster!”

I can only imagine that you are asking yourself, “Is this for real?”  Well, so were we when we were offered the opportunity.  The whole story is that a wonderful man named Charles Keller owns a company called Gotham City Motors.  He is incredibly generous and likes to go to whom he says knows best when it comes to donating your money.  He invites children that have endured some complicated setbacks and their families to attend a tour of his batman fantasy world for a night to remember, and donates money in their honor to a charity that has been particularly helpful to them throughout their journey.  In Emilia’s honor, he donated $1250 to TGen’s center and $1250 to an organization called ‘Feeding Matters’ (formally known as P.O.P.S.I.C.L.E). 

Needless to say, fun was had by all.  I forgot to mention the other highlights.  They picked us up in a limo (yes, picture what the boys’ faces looked like when they saw this) and as a parting gift he gave Emilia her very own key to the batmobile that she may return and drive whenever she would like, and the entire video collection of the original batman series...such a crack up!  What a cool place.  Dave and I were so excited to be able to pick an organization to give the money to but it was difficult to choose just one! 

We ultimately selected ‘Feeding Matters’ because we both recalled their executive director taking a couple of very panicked calls from us when Emilia was just 4-5 months old.  At that point, she had an NG tube that had been in place since she was 2 months old, she was throwing up at least 5 times each day, and was growing very, very little despite being given more than 125% of age-appropriate calories via the NG tube.  She ate little to nothing by mouth.  GI doctors wanted us to give her more calories and insert a G-tube; we wanted her to learn to eat and grow, and boy were we all clueless.  When I called the executive director (Chris) we were contemplating going to an inpatient feeding clinic out of state.  Having a child that refuses to eat is a frightening, complicated experience.  We knew that Emilia would be best-served in a team environment that could monitor her vitals and such while still aggressively helping her learn how to eat…seems like a fundamental human right to know how to eat!

Chris from Feeding Matters is a parent that had already experienced these difficulties.  I recall clearly two important points from our discussion.  The first was that it is probably a good idea to look out of state at this point (which reassured us we were doing the right thing), and second was the pain in her voice when I expressed our desire not to go to a G-tube.  She very humbly just said, “I know it is hard to comprehend at this point, but I can promise you that you will be so grateful and relieved to have that tube once you get there.”  Wow, she was quite correct!

For those of you that do not know, this is how we ended up at the Cleveland Clinic in Cleveland, Ohio for three-months.  There are numerous Cleveland stories that I hope to get to at some point, but I will stick with what we consider the highlight achievement from this trip for now.  One of the perks of being at a feeding clinic at the Cleveland Clinic was being able to see a number of world-class specialists.  Our favorite was a GI doctor that spent hours with us, was able to get any procedure he felt necessary scheduled within 24 hours, and gave us the BEST piece of advice.  After 5 or so minutes of calculations during one of our appointments, he turned to us and said, “Your child is not able to produce fat, I know that for certain.  Never give this child more than age-appropriate calories.   Even with age-appropriate calories, I can tell you that she will only gain 75% of age appropriate weight…so don’t expect anymore.”  This was an aha! moment.  This comment became part of her medical records and we took it to the bank, so to speak.  We had to actually stop seeing GI doctors in Phoenix and stick with a nurse practitioner from the GI office who very wisely allowed us to keep her calories consistent with the Cleveland GI’s recommendations.

There were a number of times we questioned whether this was correct, her weight gain was so small some months and we are all susceptible to “more, must be better” thoughts.  However, we fought hard (including with ourselves) to not over-feed her.  The confirmation of success of this strategy has come in two manners; one, the fact that you can look at nearly any time period over the last few years when Emilia was healthy, and she averaged exactly 75% of age-appropriate growth. Two, a few months back we spoke with a doctor from the National Institute of Health about her upcoming visit.  She asked us very nervously, “why does she have a tube?”  I explained her love/hate relationship with food, her non-existent appetite, etc…but assured her that we have never used it to give her more than age –appropriate calories.  She let out a very relieved gasp and said, “Good, because the only other patient similar to her that I have seen with a tube is a five-year old with a very fatty liver, the result of being over-fed for much of her life.”  This could have very easily been us.

Well, we are supposedly set for a week-long stay at the National Institute of Health in Bethesda, Maryland beginning Oct 21st.  Recognizing that this is a service of the federal government, we are obviously a bit concerned that it might be postponed or even canceled, all of that is unknown.  Hum…here’s hoping they figure something out.   

Blog #5: “How Do You Solve a Problem Like…Emilia”

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Yes, we have been watching The Sound of Music…love that movie!  Boy does this picture provide some good context.  Not everyone gets to eat pancakes in the fanciest dress they own, in front of the television.  Stop eating much real food for a couple of weeks and your parents will let you eat in whatever manner works for you!  We officially find ourselves in the midst (but nearly through, we think) of our first major stomach battle post gluten-free diet.  It seems like there might be two explanations; either we have contaminated her with gluten in a serious way, or I feel like she might be showing more and more signs of being diabetic.  Her bad nights of sleeping, stomach complaints, and refusal to eat is more and more being coupled with a random episode of screaming and flailing like her blood sugar has crashed once or twice per day.  The only fix is to literally restrain her and force some formula or pedialyte through her g-tube…and after five minutes she is back to being perfectly normal. 

Hum…what to do, I wish I knew.  One of our biggest struggles over the last couple of years has really been deciphering what type of doctors to seek out for help.  An obvious first choice for many parents with children whose health continues to be a mystery is the GI doctor.  But as I know a number of you have experienced, they seem to be a bit narrowly focused (in our case it was on growth).  The more I think about it, they really all are narrowly focused.  I get why…that is why we call them specialists.  They are supposed to specialize (how is that for profoundJ).  However I am sure that I am not the first to say this but that type of care just doesn’t really work for Emilia.  In fact, I think my next campaign will be getting a group of people together to write the following manual entitled,  “So You Suspect Your Child May Require Critical Care, Read this Manual So That You Don’t Feel Like Such an Idiot.”  Now how about that witty title J?? 

I am by no means an expert enough to write this manual, however here are some of my insights based on our experiences.  Never should a doctor (in this case a GI doctor) say the following when speaking to a parent of a three-month old child in a constant state of failing to thrive, throwing up at least five times per day, “I can’t be expected to solve all of your child’s problems.  You need to go see other doctors.”  Here is a better way to approach this topic Mr. Angry GI doctor, “Wow, I really want to help.  Here are a couple of other specialists I think you should see.  I have taken the liberty of calling a couple of them to make sure they get you in as quickly as possible.  I recognize I cannot expect you to be an expert because this appears to be your first rodeo.  Please call me in a week if you have not been able to be in touch with these doctors.”  Just a subtle change of tone please J.

Seriously, if you have been healthy all of your life, should you really be expected to know what an endocrinologist really does??  Do any of you even know what they do??  The only reason I recall figuring out that we needed to go see one was because Brandie Gray luckily called one day to check in.  We discussed some mutual frustration regarding GI docs and she just happened to mention, “Hey, I have a friend that had to take their child to see an endocrinologist recently maybe that would be helpful.”  Neither of us knew exactly what they did but one google search later and I realized she was right….so thankful for Brandie.  I could probably bore you with more cruel doctor commentary, okay just one moreJ.  In discussion with a cardiologist with regard to a very important problem that we have to find a treatment for, we mentioned that we happened to know the genetic abnormality and provided as much as we could about likely candidates for treatment.  His response, “You see, you just have to be experts on one condition, I have to be an expert on hundreds.”  Wow, did he really just say that, I asked myself.  The funny thing is, I totally agree with his comment and would probably even say it is fair, however some things you just don’t need to say out loud unless your goal is really to show off your naked male insecurities. Alright, angry Mary is going away.

There have been a handful of rays of sunshine among our doctor experiences...in fact one comes to mind that I would really say was a turning point for us.  I knew that Dr. Narayanan (from the TGen Center for Rare Childhood Diseases) was a different type of physician when I read his first record of our very first appointment with him.  As part of his medical summary, he took (at that time) over a hundred or so pages of our daughter’s medical records and specialist reports and concisely summarized each of them.  He took a convoluted, not exactly helpful pile of papers and listed what exactly was important from each specialist we had seen.  From that point forward, any time I needed to supply a new doctor with medical records, I just sent him or her a copy of Dr. Narayanan’s summary.  His methodology inspired me to always keep an updated five page medical history summary that included a page of diagnoses, a page of tests run and their results, and some important medical history laid out chronologically.  This has been life-altering as I am sure her total medical records are well over thousands of pages in length, yet could hardly highlight for any one individual a comprehensive picture. 

When Dr. Narayanan spoke with us about the possibility of having Emilia’s entire genome sequenced, it was the first time that we started to feel like someone was going to focus on the problem solving component of this puzzle.  We first received word of some anomalies in Emilia’s sequencing results about 7 months ago.  Dr. Narayanan emailed to ask if my husband and I could swing by his office (on a Sunday no less) to provide our blood samples.  He explained that there were a couple of anomalies that they wanted to compare against ours and drew our blood (which we found quite refreshing because neither of us could think of another time in our life when an actual doctor drew our bloodJ).  Having become an avid rookie-researcher myself, I read everything about the two genes he noted.   A few months later, he confirmed for us which gene they believed to be causing an array of issues throughout our daughter’s body.  TGen also provided a research report that I had not yet seen to support their analysis.  It was at this point that my research really took flight.  I read every study I could find that had anything to do with this gene and the protein that it is responsible for, some on humans, many on mice.  A few weeks after this point, Emilia required a heart catheterization to study what might be the source of her pulmonary hypertension.  I was able to not be surprised to hear about how Emilia responded to medicine during this procedure as much had been written on mice, pulmonary hypertension, and variations in the CAV-1 gene. 

All of this information inspired me to read a number of books on genetics and an array of research reports.  This enabled us to finally attend an appointment with another specialist fully-informed, with appropriate questions in-hand, and has honestly been a turning point for her care.  We feel more in charge.  We are strategizing about what treatments and/or studies to seek out.  Our conversations regarding her health are so much more hopeful and forward-thinking, rather than desperate analysis of every little symptom she is experiencing.  More importantly, we are starting to know what to expect, what to look for and we are beginning to investigate what methods we might use to avoid some common conditions associated with this error.  Now that my friends is quality care.  This is not meant to be a commercial for the Center, just my honest experience.