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."