A Day in the Life

As the old saying goes, "no news is good news."  I'll let that explain why Dominic's faithful admirers have not had any sort of Dominic-fix lately.  Sorry about that :/.  In our world though, boring is good, and thank God, things have been good.  Dominic has increased doses of his seizure and thyroid medicine as well as his dopamine but all in all, he is doing much better than I expected he would at this age.  He is progressing in motor skills (despite the fact his brain degeneration is progressive- something the doc's can't explain) and is sitting up with little support and can hold his own head up for longer and longer stretches.  He's also alot more alert and interacts with us more (in spurts).  Just today he was playing a take-turn game of sticking his tounge out and clicking it after I did... this is HUGE!!  I was so excited, I could have died!  But best of all, he's cuter than ever.

We're still waiting on his gene tests to get back (remember the whole exome sequencing that sequences all 22,000 genes... +/-, who knows?!?!).  It has been quite a while so we are expecting that back pretty soon.  Be assured, you'll be the first to know what the tests says.

We're home schooling the oldest three kidd-o's and it's working out perfect for our family.  It gives us the flexibility we need with Dominic and it has been SO fun being with them as they learn and explore new things.  Fun, but yes, crazy sometimes.  This would be another reason I have neglected the blog, and through that, you faithful readers.  I'll try harder... I promise this time!

Here's a typical day in the life of our little saint:

Tuesday through Friday he has at least two therapies a day.  He gets PT, OT, ST (two different therapists, one for feeding and one for communication), VI (visual impairment teacher), O&M (orientation and mobility teacher), and soon AI (auditory impairment teacher).  That's 9 visist a week.  Thanks goodness for home therapy!

 Between therapies he's entertained by the REAL Power Rangers!

After his sessions, he crashes for a good long nap.  His therapists are relentless... just the way I like it!  :)

 

 He gets a good bath, a massage, and trach or tie change, depending on the day.  He LOVES his baths!

...And more therapy from his siblings... "Roll, Dom, roll!"

 He protests, but to no avail...

And on a good day, he gets some lovin' from his Mi Mi

 

 Ever-faithful, Mary is Dominic's little mamma.  She is constantly hugging, kissing, cuddling, trying to carry, lying on top of (scary) him.  She'll be the one that takes over when Mike and I are too old, I just know it! :)

So there you are good, faithful Dom-lovers.  I promise not to stay away for so long next time.  We still need your prayers, as his condition is progressive, and especially prayers for his healing, if it is God's will.  Most of all though, we only want God to be glorified through his little life, whatever that may mean.

In Jesus and Mary,
Chasity.

I saw Jesus yesterday

After a long internal struggle my prayers were literally answered and confirmed that the Lord wanted me to make time every week to go to him in adoration.  A woman whom I don't know called me out of the blue and said she has been thinking about me for a few weeks and she suddenly stumbled across an e-mail I sent over 2 years ago inquiring about perpetual adoration.  She just knew she should call me.  I went on to argue with her about how a perpetual adoration chapel is more important to build than a gymnasium (the current plans for this parish), after which Mike admonished me for arguing with a messenger of God.  Stubborn as a mule :/.  So, for the past two weeks, I've gone and sat with Jesus and tried to pray.  I have no stamina though and get so easily distracted.  If God would ever do something so cliche as roll his eyes, I'm sure there would be all kinds of valley-girl eye rolling looking down on me.  But instead, I think he's patient and glad I'm there, however messy it is.

His happiness that I'm coming to him was confirmed yesterday during my weekly adoration.  I was praying (not distracted yet, still early), when I looked up and saw such a beautiful sight.  A faithful woman whose husband is a prominent physician in Fort Worth was walking out of the church, right in front of me, at the exact moment I looked up.  She was holding the hand of her teenage daughter who has Down Syndrome.  I've admired this young lady so many times before in the front pew but this sight was different.  I gasped for breath and silently said "oh my God, that's Jesus.  She is leading Jesus."  I watched them leave, watched the girl make the sign of the cross with holy water, and then left the church, the mom being ever so patient in leading her child.

I marveled for a few moments at this reality I just gained, that for the rest of the child's life, that mother has the privilege of leading Jesus through this world.  Let me explain in case you're not following.  Last week's readings were about how only the child-like can enter the kingdom of Heaven, and unless we make ourselves like little children, meek and trusting of God's love, we can not enter.  This teenager with Down Syndrome is forever child-like, she is not tainted by all the junk we are.  She has the benefit of remaining child like and trusting in God's love.  She is an innocent, and that's what I mean when I say she is a "Jesus" to this world.  She can show us complicated adults what it is to love unconditionally. 

Then it hit me:  I'm leading Jesus through this world too, through Dominic.  I intellectually knew this.  I know he will always be child-like and pure, thank God for that, but it never hit me like it did yesterday when I saw Jesus in the face of that young girl.  It makes everything a little easier when you can see the face of Jesus in your child, who is crucified here on earth with the pains and disabilities God has allowed, so that he will be spotless and perfect when he gains his reward. How quickly I forget to praise God for the good and the bad, and especially the crosses he gives to those he loves.  All of our crosses look different, but we can all carry them in solidarity with Christ crucified.  Praise God for his goodness.

In Them,
Chasity

The kids love taking turns having Dominic lie in their beds at night during prayer time.  And Dominic loves it too, he goes crazy squealing with joy, kicking his lags and flailing his arms.

Support

The common thread the professionals who come into our home for Dominic say is shared between parents of kids with disabilities is a desire for, and lack of, support from other parents who are going through the same thing.  However, thanks to the health information privacy act, no one can connect us.  Sure there are fashioned support groups up at the hospital, but in reality, the hospital is where we go to find out our child's brain is shrinking.  The hospital is where our children get holes placed in their little bodies.  It is the place where our "Dragon Mom" always has to be ready to come out to protect or advocate for our baby.  The hospital is where we take showers in a community bathroom, dry off with sand-paper towels, and gain 15 pounds per admission on the cafeteria food.  There was a point when I would spontaneously get angry or cry upon entering that damned parking garage.  So no, I would NOT like to go to a pre-fabricated support group at the hospital where the hospital chooses and trains who I get to talk to.  I want to go to Joe T Garcia'a and have a margarita and be free to talk about what we want to talk about, without fear of offending an innocent hospital employee who happens to be passing by.  We get punched in the gut enough up there.  And no thank you, I would NOT like another.

Despite my feelings about a support group at the hospital, I do applaud the staff up there who try.  They see us crazy, stressed out parents, and they hear us.  They try.  They are doing
 their best to meet the needs of grieving parents.  But what are they supposed to do?  It's not as if the Children's hospital could sponsor a "Free margarita night for all parents who are on the verge of loosing their minds" at the local bar.  That wouldn't look so great. 

There are times though that we DO need to go to the hospital for classes, additional information from the sweet family librarians, and support from the people up there who really do care.  [[Side note: I worked at our local Children's hospital for 6 years and I can attest, I have NEVER met another employee who didn't love their job, who didn't stay late on a regular basis if their patients needed something done, and who didn't at least sometimes cry about a very sick or devastated child.  I have seen/been that person who holds it together just long enough to leave the child's room.  They care.  It's just hard to see that all the time when we're on the other side.  You get a bit mistrusting when it's YOUR baby hurting.]]

This is one of those times though where an extra trip to the hospital would be worthwhile.  Cook Children's is hosting a "Pediatric Rehab Toolbox for Parents" Saturday, Sept. 29, 2012 from 8am to 1:30 pm.  It will be filled with talks from a doctor, nurses (calm down medical momma's, it's not that nurse with the 2" red false nails that showed up on your doorstep that one night asking to take care of your trach baby... it's a good one), a PhD, other parents, and other professionals giving you the tools that could help you get what you want/expect from every appointment.  Because there is nothing worse than leaving an appointment discouraged because you didn't get what you needed.  They will also be talking about grief and coping, maneuvering the medical record system, and how to integrate outpatient therapy with school therapy.  It's $15, but you get a discount for registering early.  Visit this site if you think this might help you.

 www.cookchildrens.org/parentworkshop or 682.885.3195.

If you are a medical momma and live close by (Fort Worth, TX), reply in the comments box.  I'm ready for that margarita now! :)  Actually, I am in the process of helping form a support group for moms of children with multiple disabilities with a very helpful , caring woman from DADS, dept for visual impairment.  E-mail me at the address at the top right of this blog if you would like to be included in this.  We will most likely meet at someones house, because the last thing we need is to bring our "multi-handicapped" kids all together in public and an innocent bystander get knocked out by a mom who just got her last nerve frayed.  Wouldn't that be a news story!

Soux Chef Mary Grace stirring Dom's food

Head Chef Momma and Lil' Soux Chef Mary

Co-Chef MiMi helping out with making Dom's food.  What would I do without her.

Dom's food, almost done!  I make 1 batch per month, because any more than that is just too much cooking for me!  In this batch is asparagus, spinach, broccoli, green beans, red bell pepper, carrots, zuccini, pork roast, sea salt.  The breakfast blend this time has egg yolk, avocado, and apples.  He is so spoiled.

The best big Sissy in the world, feeding her "Baby Bubba"

 

Dopamine Schmopamine

Last week was hard.  We found out about yet another diagnosis for our little saint, and turns out, that was the proverbial "straw" that broke this momma's back.  He isn't making the neurotransmitter Dopamine, and if that wasn't enough, the part of his brain that produces this substance is being selectively killed off.  As the neurologist said, this is "very interesting."  Not a good thing to hear from a guy that smart.  Allow me to translate.  You could equate the term "interesting" coming from a doctor of his intelligence with "puzzling," "mind boggling," "fascinating," "un-ordinary."  Shall I continue?  All in all, "interesting" isn't what you want to hear from the brain doctor.  It doesn't exude confidence, or even a firm recognition of why this is happening.  But don't misread me, I still LOVE his neurologist.  Why?  Because he genuinely cares (and he is one smart, nerdy fella).

Apparently my work/school mind has been turned off for a while, so I had to do some light reading to remember what dopamine was and what it did in your brain.  Let me give you the Cliff notes.  Dopamine is a neurotransmitter that allows neurons to communicate within the brain.  This little chemical apparently is pretty darn important in the brains ability to get information form one part to another, especially in motor functions, or how we move.  A lack of dopamine causes Parkinson's disease (not what Dominic has), a condition usually obtained in late adulthood that causes the affected person to loose control of their movements (think of the Parkinson's shuffle... those little small steps they take, uncontrollable shaking, Michael J Fox, etc).  Dopamine also is responsible for the coordination and initiation of movement (along with other parts of the brain).  This is a very simplified version obviously, but it's enough to get the picture of why this little chemical is so important.  On an interesting side note, dopamine levels are high in drug addicts, and according to some of the studies I read, lead to the cycle of addictive behavior.  On the contrary, it is low in children with ADHD and is now being attributed to a cause in this diagnosis.  .... AND I'm done nerding out.... [[Respond in the comments section if I have something wrong here.]]

  The neurologist said the lack of this chemical may in fact be the cause to at least some of Dominic's visual and hearing loss, lack of movement, and lack of coordination, as the information might get "stuck" once it enters the brain.  His eyes are healthy, they work.  I haven't had an actual doctor say his ears were unhealthy, seems to me the diagnosis of why he has hearing loss is a best-guess, what typically is wrong with kids with this sort of hearing loss.  In case you haven't gotten the memo, Dominic is not ordinary.  He does not follow the classic pathway in any of his conditions, so a best guess just isn't cutting it here.  It seems to me, the buck stops at the brain.  The information is getting there, it's just not being moved along within the brain as it should.

So there you go, another diagnosis to add to the list.  We have started a 2 week trial of Sinemet, an artificial dopamine replacement drug, to see if we notice any effects in his movement or attention.  Only two weeks are recommended because you typically see results in this time period, if you are going to at all, and apparently the risk of this medication is greater than the potential good it may do if you stay on it past the two weeks without clear improvement from the patient.  Awesome.

 What do we do now?  Same thing we have been doing: love this little ball of chubby-bubby with all we have and thank God every day for the good and bad.  Teach the other kids what self-gift REALLY looks like.  Show them parents who do hard things everyday for the betterment of others.  Do our best to hold it together.  Try to remember Dominic's great purpose in this life and try not to get in the way of that.  Get over myself and so I can let him do his work of preaching.  Accept the cross God has given us and try to remain standing as best we're able.  If we fall, get back up.  Easier said than done, but we're trying.  Here's to our "lousy best."

What's a life worth?

This has been weighing on me for quite some time.  That unanswerable question that shouldn't ever  be asked but often is by doctors, politicians, and yes, even parents of kids with disabilities: what's a life worth.  I'm talking mainly about resources in terms of time, money, and level of care.  At what point do we say "enough is enough" and as one doctor suggested very early on, when do you "bring them home to die?"

Such a horrific question might never had entered my mind if not for two people in particular, make that three, that have seered words and images in my mind.  The first happened when I was a tech at Children's Hospital in Dallas.  A teenage boy came in with profound disability.  He was unable to communicate, walk, and mostly move at all on his own.  His arms and legs were full of contractures, causing him to permanently look like a turtle on his back.  He was there for a custom wheelchair seating system and I'll never forget him.  I remember looking at him, watching his mom change his diaper, watching her hook his tube feeding up.  He just laid on the mat and drooled.  That young man impacted me more than all the professors in the world could have.  All at once I loved him, pitied him, and was repulsed by him. I was disgusted at the beige goo being fed to him.  But as often happens with me and severe kids, I fell in love with him.  He, who could not even speak, pushed me into the profession I chose, and gave me a heart for those with special needs.  I don't remember his name but his face will never leave my mind.

More recently two doctors have brought up the cost, both monetarily and emotionally, of caring for a "medically fragile, technology dependent" child.  The first happened early on when we got home and I asked for more nursing hours due to being totally overwhelmed.  To my complete amazement this doctor denied it, saying any more would be too taxing on the health care system and went on to explain how she must be financially responsible when making these sorts of decisions.  I told her I just couldn't do this (care for Dominic and the other 3 kids) and she suggested I hire a babysitter for my other kids.  Punch in the gut.  This is the first time it was suggested that Dominic was not worth the cost of caring for him.  In her defense, I later found out she is having to fight insurances now because they are dropping all nursing hours from kids who are vent dependent, so she feels like she can't prescribe any more than the normal, recommended amount due to this backlash from insurance companies.  So really, it was insurance companies boldly putting a price on a life, not her.

Another doctor and care team we have discussed with us on multiple occasions the reality of the time that may come that we say "enough is enough."  They constantly prepare us for the worst and their job is to help us plan.  For instance, we need to think about the higher probability than normal kids of Dominic having a sudden cardiac arrest and his functional level dropping.  The haunting reality of having to make that decision to sign advanced directives are always looming over our head.  To that mind set I say "so what if his functional level drops, is he not worth all life saving efforts?"  In reality, this is a decision that parents have to make everyday.  I guess if and when we ever get there, we will know what to do.

Often times when we're in the ICU I think about all of what the ICU doctor's see on a daily basis. Children with awful injuries, who have gone from totally normal to virtually brain-dead mutated images of their former selves in an instant.  They see kids like Dominic, only sicker than Dominic, constantly in and out of the hospital, with no apparent "value of life."  I wonder what they think.  Do they see certain kids, with certain severity's and wonder why the parent still keep this child alive?  Do they secretly wish that child could be "put out of his misery?" 

At what point do you say a life is no longer worth living?  Some would say when that person no longer has "quality of life."  What does that mean?  Is a person with profound mental retardation who has no ability to move or speak or communicate have quality of life?  Does that person ever show any sort of happiness?  Does the "Turtle shell" boy I told you about have any "quality of life?"  Does he bring any joy to any one's life?  Does he feel joy?  Does it really matter?  People say all the time, referring to their unborn baby, "just as long as she's healthy."  What if she isn't?  Does it decrease her value as a person? 

To this I say a resounding "No!"  In fact, I would argue that it increases her value to society.  There is no way of telling how much money has been spent on Dominic since his birth.  I would guess it is up in the millions.  But Dominic doesn't have a price tag.  The world desperately needs people like Dominic, and my friend in a turtle shell, to show them the real worth of human life.  A successful, intelligent, beautiful person does nothing to convey the innate goodness of life.  We see the external, applaud their accomplishments.  It feels good to be with them.  On the other hand, it is uncomfortable to with people with profound disabilities if you are not used to looking past the exterior to their inner goodness.  A life doesn't have a price tag.  It does not have an arbitrary value where it suddenly becomes worthless.  When we see these severely affected people we must look past the exterior, the deformations, the "uselessness" and see the interior life willed to then by God.  Only then can we know the high purpose and profound responsibility he has given to the smallest among us.

by the way, kids don't have a problem seeing the inner goodness.  That's why they're my favorite "class" of people :)

It's been a while... surgery and other stuff

Did you get the memo that it's almost September?  I know it's been a while since I last posted when I start getting messages on Facebook asking how Dominic is doing.  August was a full month, here's the rundown:

Our sweet little man finally got his foot braces we had been waiting for.  Camo, of course.  When he has these on with his camo hearing aides, I sometimes can't find him.  Worse yet, Mike starts getting his hunting guns out thinking he's got a hunting buddy ready to go.  We'll have to look into some sort of search and rescue dog if we keep up with the camo print.  :)

 

 

Another biggie this month was his long-awaited surgery.  You know, the one that got cancelled literally minutes before they wheeled him back last time?  Well, this time we had peace about the procedure, and he went back with a fresh blessing from his favorite padre, Fr. Pio Maria.  The surgery went great and the best case scenario was found when they went in.  They were able to completely bring the gonads down in one surgery, his broncoscopy showed his airway is improving, though not normal yet, his hearing is stable (not progressive, thank God), and as for the lumbar puncture, we're not sure yet.  The fluid was sent off to be tested and we haven't heard anything as of yet.  Maybe in a few weeks.  The neurologist is looking for the disease process by testing for metabolizers, in an attempt to find the cause, and possibly some way to stop/slow the brain shrinking.  On second thought, "shrinking" isn't a very nice word.  Let's use "atrophying," it sounds more medical and a bit more elusive.  There, that's better.  These pictures are the evening before the surgery... Super-Dominic!

 

 

 

After the surgery we weren't admitted like I anticipated, so we were put in the recovery room with all the other post-op kids.  In the first 5 minutes I yelled spoke firmly to the nurse twice (sorry nice nurse but you must admit, you were a bit clueless) and was overly aggressive with the sweetest Audiologist in Texas (again, sorry... I'll blame it on the nerves).  We were there for hours trying to get his pain under control until finally the doc's got the word.  Imagine if you will, in slow motion, the two smartest docs we have, walking in together.  A dream team ;)  They heard we weren't budging (the recovery room was empty sans 1 kidd-o by then) and were asking to be admitted for pain control, so rather than sending the PA in (whom I probably wouldn't have listened to anyway... still have a grudge from when he did Dominic's first g-button change...), the docs themselves came.  They prescribed stronger meds and gave us peace of mind.  Our Pulmonary doc was on call all weekend, so we could reach her 24/7.  We seceded and we were on our way home.

I wanted to comfort him if he needed it, so I slept on the floor in his room the first night (no nurse, just little man and me).  This is a post-op day 2 picture.  I don't know what they did to his hair during surgery, but I'm pretty sure they have a bottle of gel and they style kids hair crazy, just for fun ;).  It was so funny sticking up like that.

 Still out of it

 

 Starting to wake up a bit

 

 

The other great thing that happened is this (look down): he got his standing frame!  I have been worrying about him having weight through his legs for a while now so we got a little baby stander!  The standing frame is so important for lots of reasons: to increase bone density, to promote proper formation of the hip socket and other joints, to regulate his tone issues, to be upright for better brain function, to assist with visual training and orientation, promote social skills by bringing him face to face with his siblings.  Whoa, I gotta stop.  I was lapsing into "PT me" starting to write a letter of medical necessity.  sorry.  Anyways, here are some pictures of baby Dom with Little Mary, our firecracker.

 Me: "Mary, look at the camera,"

Mary: "No, you look at the camera"  Stinker.

 She tries to dance with him.  Unfortunately, he can't refuse.

 

 

So, that's that.  August, come and almost gone.  I will try to do better in September, and actually write down the running blogroll in my head.:)

 

In Jesus and Mary,

Chasity



What the Houston Doc really said

I'm sorry to say in my last post I gave you the bubble gum version of the neurology appointment in Houston.  I was still raw and since this can be viewed by the whole world, and not just my safe little e-mail list I once had in the beginning, I needed some time.  Things are getting back to normal now and I'm starting to get a scab over the new wound we received there.  I'm ready to share.

The appointment itself was just as I said in my last post.  Dr. Fernandez took the MRI scans, the medical records, and the history he obtained during the visit and said he would study everything well in a couple of days when he had time.  The scans were read by the neuro-radiologist he hand picks (he said he'd come back as many times as it takes to get the specific one he likes to use).  When he called a couple of days later he told me they were able to re-read the scans, independent from the reading previously done by the radiologist's here in Fort Worth, and had come up with at least a little something.  They agreed with the Cook's folks, his brain is shrinking, in both grey and white matter.  The condition is classified as severe and is progressive.  Of course I didn't think to ask where "severe" landed on the scale of bad-ness.  I'm assuming there is maybe another level of bad above severe??  Profound maybe?  Surely.

They think the condition is metabolic in nature but won't know for sure until his gene tests come back in 3-5 months.  He made it clear that metabolic diseases were almost unknown and only a very few could be helped by supplements or diet and medicine.  He said kids with metabolic disease with this severity can live a long time.  He has one patient who's 20.  Sorry doc, but 20 isn't very long, and the fact that ONE patient is 20 doesn't make me feel real great.

He also said with how he looks now (both physical exam and MRI scans) he would not expect Dominic to develop much, if any, in language or cognition.  This I expected, from the beginning really, as soon as we found out his problems were genetic.  But as almost every mom with a special kids has told me, the doctors are usually wrong when it comes to prognosis for development.

I guess the reason this hit me so hard is this is the first doctor, ever, to give any sort of prognosis or classify the finding like he did.  I appreciate the honesty, I really do, but man it sucks.  It's that whole "brain shrinking", "grey AND white matter", "severe" thing that gets me.  I knew it was happening, I can read the MRI reports just like anyone else, but I'm not a neurologist, I can't say what it all means in the grand scheme of things.

This past week we have cancelled all our therapies and took time just to be.  We've struggled and come out on the other side, though not the same.  Just tonight during my rosary I felt the mystery of the annunciation profoundly.  Mary said yes, without caveats.  She loved her son and watched him suffer and eventually die.  BUT, she did not question, she just said yes, according to His will.  Over and over.  It is my deep yearning that I can imitate her in this way by just saying "yes" regardless of what comes our way. 

We don't know how long we will have him, and now we know it may be less time than we expected, but we're just loving him in a way that makes him believe he is the most important person in this world.  Because to us, he is.

 Dominic sporting his new orthotics

The only problem is whe he has these and the camo hearing aides on we keep loosing him ;)