I've been avoiding this

There is a reason I haven't written in a while.  I could blame it on being busy, or on taking care of the kids, or I could even fib and say my computer was broken, but that's not the truth.  Last week we got a diagnosis that I have been suspecting for quite some time but it really hit me hard and I just needed time to process and work through it before I could talk about it with all of you. 

I have suspected for a while that Dominic couldn't see much, and he was already diagnosed with Cortical Visual Impairment, or CVI (where the eyes are intact but once the information reaches the brain it is not processed correctly) but last week the neurologist diagnosed him with Atrophied Optic Nerves.  I knew this before I went in for our appointment because I happened to have an appointment the day before with the Medical Records Department to review his charts.  I saw the most recent MRI which showed lots of sucky stuff, and right there in black and white it said "optic nerve atrophy/hypoplasia."  Immediately my stomach sunk.  I didn't know exactly what this meant, but I know what an optic nerve is and I know what "atrophy" means so I put two and two together.

The next day I went to the Neurologist and asked him what he thought it meant.  He made a pained face and said that he thinks Dominic will have significant vision loss.  Like I said I was expecting this as his pupils no longer react to light (he will flinch when the light turns on in the room, but when you shine a light in his eyes, they do not react at all).

There have also been unfavorable changes in the brain, including increased ventricle size and increased signal on the MRI, showing more water than there should be in the brains grey matter.  The increased ventricles, they think, is not due to increased pressure in the brain (which would be hydrocephalus), but because the brain is not growing, thus making more room for the ventricles to grow abnormally large.

Of all the diagnoses he has, this one has really bothered me and I took it pretty hard for a few days.  I always pray for God's will to be done, in all aspects of my life, and especially when it comes to Dominic, but that is easy to pray and hard to live.  I was facing this new reality of a child with visual impairment and what that meant combined with his other multiple disabilities.  And like always, I have these images in my head of all the blind people I have known throughout my life.  How they moved, what their facial expressions looked like, how they maneuvered their environment.

When I was a tech, before I went to PT school, I worked at Children's Medical Center Dallas.  There I would help a therapist every week with one special little girl named Gianna.  She was blind.  For some reason she has always owned a piece of my heart, I was in love with her.  I was always so drawn to her and would make sure I was available to help with her session when she came in.  In college I used to read to a boy who was blind to help him with his homework.  Again, I was always drawn to him but in my selfishness I stopped.  It has always gnawed at my soul how I could have been so self-centered, he needed me and I abandoned him, for what?  I had nothing important to do.  Now I know why.  I God's goodness he has always prepared me for life with Dominic.  He drew me to my profession, of working with children with special needs.  He placed a desire in my heart to get close to blind people.  He has seered images in my head of certain children with severe disabilities, like Michael, the first patient I ever had who died.  I can still see his face, so innocent, trapped in this contorted, broken body.

After I grieved for a few days, I did what I know how to... I figured out how to advocate for this particular disability.  I contacted the states division for the blind and had a meeting with a blind child specialist who then is making referrals to all sorts of different programs.  Yesterday I talked with a Visual Impaired Teacher (VIT) in the school district who will start coming out to see Dominic (they start seeing kids with VI very early because they take so long to learn how to do everyday tasks).

Where am I now?  I still feel the tinge of the diagnosis.  It still makes me shutter a little bit.  I have hope that he will be able to see some but the therapist in me is trying to be realistic and prepare for the worst.  I am learning all about the visual impaired world so I can be the best care taker possible for Dominic.  Mostly though I have forgotten about what he can't, or may not be able to, do.  I see his sweet face, so happy.  Happier than any baby I have ever met  I have to remember that through him I can see God, if only I choose to.  I am thankful for his life, for the lessons he is teaching me and the rest of his family, for the opportunity to, in a very special way, enter into the mystery of our Lord.  To trust.  To believe.  To praise Him in hard times.  What a grace we have been given to be able to do this; we have no strength but He always fills us to the point where we can not contain the love he pours out upon us.

Trusting in our Ever-Faithful Lord,
Chasity

MRI results... scared but trusting

Yesterday I had one of those moments where you want to crawl under a rock and hide.  Dominic had gone back for his MRI and I was sitting in the hospital Starbucks pumping (that's right... I pump in public, covered of course) when the nurse from the pre-op room came in and called me over.  I saw him holding the trach that Dominic had in so of course I instantly felt my stomach drop and started thinking all sorts of bad things.  You see, the type of trach he normally wears has a metal coil inside of the tube that goes in his neck, and the rest of the trach is gray and clear.  For the MRI we have to switch it to a all plastic one so the metal in the other trach doesn't make it pop out during the MRI (which uses really strong magnets).  Well, I thought I had put the plastic one in (all white) but turns out I put a metal one in that looked like the plastic one.  I felt like the world's worst mother... if the anesthesiologist hadn't caught that he would have had his trach ripped out during the MRI! 

Anyway, on with the story.  After the MRI, he came out of anesthesia fine and had blood drawn for more tests that the neurologist wanted to run for possible metabolic disorders.  **Side note: the longer I go without working the weaker my stomach gets.  I felt the urge to throw up mingled with the urge to tackle the phlebotomist when she was fishing in his arm for a vein.   Whatever happened to my iron stomach??**  The MRI took so long that we missed our neuro appointment so we had to reschedule for next week.

Lucky for me I already had an appointment set today to review his medical records, and thankfully the MRI report was in.  It showed increased ventricle size from two weeks ago, a narrowing of the cerebral aqueduct and extra fluid surrounding the brain.  I didn't write it down and could not take the report with me today (they have to mail it to me) so I don't remember the exact ventricles affected.  After I was finished with Medical Records I ran into his Neurologist in the hall (luck or divine?).  I told him I just read the report and he said he was going to talk with neurosurgery about what to do.  He said normally the big thing they worry about with increased pressure on the brain is damaging the eyesight but this MRI was able to visualize the optic nerves well (the nerves that go from the brain to the eye) and they are atrophied, so he's not sure if the benefit of a shunt is worth the pain and risk of the surgery.  If they do perform surgery, I think they will place a shunt under the skin that would allow excess fluid to drain from the brain into the belly.

I'm talking bluntly about this, but really I was quite upset today when I read the report.  It's so strange... being on this side of health care.  I can't count the number of reports like this one I have read about various patients, but sitting there in the medical record department, with someone sitting beside me for my 2 hour time frame, reading this was surreal.  I thought of all the kids I have treated that had this type of stuff going on and how I processed the information in such a factual way.  I remember talking with other therapists before going to see these kids in the ICU and just listing off their diagnoses in such a matter of fact sort of way.  I do think I really did care, as did my co-workers, but we had become so accustomed to these awful reports it was just an everyday thing.  Now that it's my kid, it's not so ordinary.

After the hospital visit the two middle kids and I went to mass.  That is just what I needed.  I was reminded of the simplicity of our faith, how all we have to do is open ourselves and allow God to transform us.  He gave me such graces after communion that I felt completely open to asking Him for His will to be done, without any thought of what I wanted.  Just totally open and inviting.  Whatever brings Him the most glory and souls I will happily accept, and I will praise Him for the privledge of being His instrument.  Just as long as I remember I can do nothing, and need not do anything, He can work in me.

In Them,
Chasity

Another MRI... and me, the sheep

Two weeks ago, during Dominic's last surgery, he had an MRI that showed increased ventricle size.  The ventricles are spaces within your brain that cerebral spinal fluid (CSF) flows through.  This could be caused by an increase of CSF in the brain, or by the brain not growing.  Both of which suck.  Tomorrow we go for our follow up MRI where he will be put under again.  I'm feeling a bit anxious about this... seems like there are three possibilities: #1 no change, no answers, #2 increased CSF that may lead to a surgery to place a shunt (to allow the excess CSF to be removed out of the brain and drain in the the belly), or #3 confirmation that his brain is in fact not growing like it should.  I vote for #1.

My real fear is that we will go for our appointment tomorrow (we go see the neurologist directly after the MRI) and will be admitted.  That would suck.  I hate the ICU (where he always has to stay when he is in the hospital).  I hate the colors... I mean really, who paints a children's hospital light blue and gray.  The floors bug the hell out of me... I wouldn't have chosen those colors and the base boards just don't match.  I hate the noise and the constant cries and beeps you hear in it.  I hate having to go out of the room to use the restroom.  But really I hate the idea that he is so fragile that he has to be in the ICU.  That only specially trained nurses can care for him.  And that those said nurses mostly do things differently (and therefore wrong) than me ;).

I think I'm just anxious.  But I know I should never be anxious about tomorrow, because as they say, "Jesus' got this."  Just when I seem to be wandering off like a lost sheep again, our Shepherd grabs me by the neck with his staff and pulls me back to him.  I always pray "not for consolations, nor for suffering, but for the will of God only."  Lately though, He has given me such a strong burning desire for Him I can hardly contain myself.  I just can't wait to go to Holy Mass and receive Him in the Eucharist.  He is here, I feel Him.  Man, I love being Catholic.

In Jesus and Mary,
Chasity

One of my favorites... Chubby D sayin' "you talkin' to me!?"