Should've stayed.....

We are home and had a lovely evening of present opening.  That abruptly changed about 1100 when E started throwing up - all....over....everything.  Now I wish we'd have stayed in the hospital.  Stomach flu is something M definitely does not need.  Looks like we're in for an all around yucky weekend. :(

Merry Christmas Eve!

From this:

To this:

M is doing well.  The morning has been a turning point for her.  She's happy, smiling, squealing away - even through her MRI.  She's still pulling her hair (hence the hat), but isn't crying.  She's peed, pooped, eaten and drank.  The surgeon on call consulted with our regular surgeon who is spending Christmas with his family overseas.  They are both at peace with what was done and with the current outcome.  He feels there are months of healing and waiting ahead, but for now, wouldn't do anything different as long as she continues to improve.  So, we're headed home for Christmas - just in the nick of time. :)  We have so much to be thankful for!

The Day After

It was a rough one.  Four and half hours in surgery, a moderate amount of blood loss and three shunts later M is resting fairly comfortably.  I broke down and had them give her some morphine this morning because she was scratching her face and pulling her hair again.  Anything beyond Tylenol is sort of frowned up on in neuro patients, but she definitely needed it.  She's very unsettled, very confused and just generally discombobulated (it's a real medical term, I swear) today.  She's also very puffy from the blood loss, fluid replacement and from laying on her face for so long during the procedure.  We're headed to CT in about 45 minutes to see how things are looking and if all continues to go well, we hope to go home tomorrow.  I have a killer headache and am running on about 1 1/5 hours of sleep, a can of Diet Coke and a bowl of cheesy potatoes so hopefully there will be a nap in our not so distant future. 

We were blessed by visitors already today.  The lovely Julia and her mom happen to be just down the hall.  It's always nice to have friends nearby. :)  The boys are planning to come up a little bit later.  We didn't send E to school today.  He had a pretty long day yesterday hanging out in the ER with us and then headed off to Grandma and Grandpa's house for the evening until Kevin could get back to pick him up and take him home.  In any case, an early start to Christmas Break was in order for him. 

My Dolly is stirring - I'll update later.

All I want....

....for Christmas is TWO functioning shunts.  I hate to say it, but I was right - you know DAYS AGO when I thought there could possibly be a shunt problem.  I don't know why I didn't trust my instincts more.  M is currently in surgery for a very complicated looking shunt malfunction.  It is impossible to tell which shunt or if it's both that are failing.  It's also impossible to tell if she has loculations again.  There is no solid plan right now.  Our beloved neurosurgeon is OUT OF THE COUNTRY!  The new nsg seems nice, very confident (but not too confident) and competent.  I hate these after hours surgeries because they have to be done on the adult side of the hospital, but luckily our favorite peds anesthesiologist is on tonight.  No idea how long we'll be here, but I'll update when I can.  Thanks for praying for our precious dolly.

The Very Special Gift

Today was one of those days I needed a little reminder and I got it when I logged on.  I took M for her AFO fitting today and brought home yet another piece of equipment.  These very cute, very tiny pieces of plastic will hopefully help prevent my little baby's legs and feet from becoming more deformed.  It was an easy appointment and in the whole realm of what we've dealt with, it was really, totally nothing.  However, I brought home these little plastic molds and while trying to decide where they would "live" when not on the gloriously cute chubbies that are M's legs, I was reminded again just how much special "stuff" we have.  Equipment is truly taking over our house.  I'm not complaining, quite the contrary, I'm grateful we have it available to us.  It was just one more thing to find a spot for.  It was another reminder that likely we will spend the rest of M's life juggling equipment.  We currently have a wheelchair, a tumbleform, a bath seat, 4 McKie splints, a Little Room, a nebulizer, a drawer full of central line supplies, and a cupboard full of medications and syringes.  In three weeks we'll have her Benik trunk support.  A little over a year ago I never would've thought I'd ever own ANY of these things.  Heck, I'd never heard of some of these things.  So, here we are - thankful to have the best care and the best equipment for our girl, but wondering how much more we can fit in the house. 

I digress - I saw this posted on a fellow mom's blog and it's one I've not read before.  Of course, as is the case with everything these days, it brought tears to my eyes and reminded me just how LUCKY we are to have our two precious blessings in our lives.

The Very Special Gift
By S. Guevara

Once upon a time, three angels were busily working in the miracle

factory. They were responsible for wrapping up all the little

miracles and sending them on their way. Normally they wrapped each

one in bright, sturdy paper with big, shiny ribbons. They stamped

them with a delivery date and away they would go to the parents who

eagerly awaited their arrival. Things usually ran pretty smoothly.

One day, however, down the conveyor belt came a little miracle that

made the angels pause. "Oh my," said the first angel "this one's

uhm...well...different." "Yes, she is unique" said the second

angel. "Well I think she is quite special," said the first angel "but

I don't think she will quite fit our standard wrapping procedures."

And the second angel added, "And we know she's special, but will

everyone else?" "Not a problem," said the third angel "obviously a

special miracle deserves extra special wrapping; and of course we'll

send her off with our most heartfelt blessings. Then everyone will

see how special she is." "What a wonderful idea!" replied the others.

So they searched the shelves high and low for their finest paper, and

their most delicate ribbons.

When they were done, they stood back and admired their

work. "Beautiful!" they all agreed. "Now for our blessings," said the

third angel "for it is time for her to go." "I will bless her with

innocence and happiness," said the first angel. "And I will bless her

with strength to face the many challenges that lie ahead" said the

second angel. "And I will bless her with an inner beauty that will

shine on all who look upon her" said the third angel. Before sending

her off the third angel, who was very wise, gently tucked a note

inside.

And it said,

"Dear Parents:


Today you have received a very special gift. It may not be what you


were expecting and you may be disappointed, angry and hurt. But


please know that she comes with many blessings. And, while there may


be pain, she will bring you much joy. She will take you on a very


difficult journey but you will meet many wonderful people. She will


teach you patience and understanding and make you reach deep inside


yourselves to find a source of strength and faith you never knew you


had.  She will enrich your lives and will touch the hearts of all who


meet her.  She may be fragile but she has great inner strength.

So please handle her with care. Give her lots of attention and shower


her with hugs and kisses. Love her with all your heart and she will


blossom before your eyes. Her spirit will shine like the brightest


star for all to see and you will know that you are truly blessed." 

Amen

Surgery Update

For my non-Facebook friends:  Surgery went well.  Throat was dialated again, one cyst addressed and the central line stayed in.  The anesthesiologist was unable to find adequate venous access (not for lack of trying judging by all the holes, tracks and blood streaks) so it was decided to leave the line at least through the winter months.  M was a total rockstar this time with the anesthesia and recovery.  She's been smiley and silly and just now fell asleep.  I just went and grabbed some dinner - a delectable tray of Lunchables (for old time's sake, P) and a muffin the size of my head!  The hospital is so full tonight that we are sharing a room - never thought that'd happen. Our roomie is awake and crying a lot so hopefully we'll catch a few winks here and there.  She was a July preemie and her mom is very sweet - we have a lot in common.  In any case, we should get the boot in the morning and be on our merry way back home. :)

Surgery

E came down with a terrible cold, too. :(  He stayed home yesterday where I pumped him full of Mucinex and fruit/veggie juice.  Today, he is much better and is at school.  M is still doing okay.  She's a bit congested, but her pediatrician said yesterday her lungs were clear.  She has had no fevers so at this point, surgery is still on for today.  She is scheduled for 2:00 p.m.  Hopefully all will go well and this will be the last throat procedure.  We're also praying for her central line to be removed.  I'm anxious to see what the ENT has to say about her throat.  She's been super gaggy the last few days and I'm hoping there's an easy, physical reason for it.  If he finds nothing, I'm afraid it's neurologic.  I'm a bit more nervous about this procedure since she had such a difficult time with anesthesia last time.  I'm hoping we have one of the anesthesiologists who is very familiar with her. 

M's disposition has also improved some.  So far, she is smiley and squealy today despite not being able to eat anything.  I'm sure that will change as the morning turns to afternoon and she can't figure out why her poor tummy is sooooo empty and worse, why mama won't do anything about it. :(

I'll try to update later.

Frustration

M is sick.  It all started last week when I sensed that something was awry.  She had no neon sign symptoms, but something seemed a little "off."  Smile on my face and optimism in my heart, I took her to the pediatrician expecting a simple UTI or an ear infection.  I was greeted in the typical manner with "what tests should we do today?"  No, she was not being sassy.  I LOVE our pediatrician.  She not only respects me as a medical professional, but as a mother who KNOWS when something isn't quite right.  She also respects the complexity of M's condition, her very difficult course and my uncanny ability to diagnose her at the first sign of trouble.  She examined her completely and we ran labs.  Everything checked out perfect.  My heart sank a little bit as I decided to take her home to watch her.  Not because she was seemingly healthy, but because being "off" and having normal lab work often means a more significant problem, i.e., a failing shunt.  The next two days she seemed a bit better, but this weekend something (or someone) possessed her.  She is C-R-A-B-B-Y!  She is crying....A LOT and it is totally unlike her.  She is giddy and squealing with delight one minute and is inconsolable the next.  She is not, however having any other signs to make me think it is a shunt issue.   Yesterday, I imagined I saw an eye tooth poking through - today, I don't see it.  She has never cried about getting teeth - or much of anything else for that matter.  She has had a cold for the last few days (of course she does, what with surgery scheduled for Wednesday and all).  We dropped her Sabril again last Friday and she continues to be more alert.  Could it be that she is merely "waking up" from her overmedicated, disorganized brain, seizurey (yes, it IS too a word) state and is just wanting more out of life?  In any case, I am at a loss.  I am exhausted and losing my patience.  It is hard for me to admit that.  It's not her I'm angry at, it's the whole damn situation.  I'm angry that there are just too many things to guess about.  A baby should not have this many possible serious medical complications to rule out.  I'm angry that I can't wave a magic wand and fix it - whatever it is.  I'm angry that at 17 months old she cannot roll over, sit up, crawl, run around, play with toys that might amuse her or communicate with me to give me any clue as to what's ailing her. I'm angry that her surgery on Wed could be postponed.....AGAIN!  Feeling so frustrated makes me even more angry because I know I'm not being the kind of mom I want to be.  I know I need to snap out of it.  I know she feels my frustration.  I know that it's not the end of the world if surgery is postponed.  I just want my happy girl back.

Gluttony

There is only one thing more heavenly than the Cadbury Creme Egg in April..........................

Chocolate Covered Cherries in December!


Please don't ask me to divulge how many BOXES have passed through our house over the past couple of weeks.

An Open Letter to Professionals

Below is an incredible letter written by Pia from her blog The Crack and The Light.  (Feel free to skip down to it if you're not up for my teary drivel).  It brought me to tears - several times actually. 

Sometimes, I find it pretty hard to find words that adequately express what I'm thinking or feeling.  Sometimes I just type to get it out and then hit "delete" lest I publish it and be judged, God forbid.  This is something that deserves to be spread around.  This is something every teacher, therapist, doctor, nurse, friend, or family member who has contact with parents of special needs children needs to read and reread again and again.  I don't ever expect anyone to understand what we go through or what our kids go through.  I don't expect anyone to even care.  I do, however, expect people to respect me and respect my feelings because I respect others.  I am a mother to two (and someday, hopefully three) children with special needs.  Their needs are of varying degrees.  Some of their needs are obvious, some are so very hidden.  My heart breaks....every....single....day.  It breaks not because they make me sad or because I don't love them or because I wish they were "normal."  It breaks because they hurt - physically and emotionally; they struggle; they put up with countless doctors, nurses and therapists; they will go through life being labelled, misunderstood, and underappreciated.  My heart breaks because I wish others could see the beauty and inspiration in my children that I see.

I think a big part of the reason this letter reached me on such a deep level is because it was written for me - a mom of kids with special needs.  It focuses on me and me is something I've kind of forgotten about.  Oh, I think about it now and again - I see the lines around my eyes and the grey hair on my head.  I feel the aches in my neck and back.  I think about it almost daily when someone says "you look frazzled" or " you sure look tired lately."  This letter touched me because it made me look inside myself and acknowledge that I do, indeed, feel all of the things she talks about.  It reminds me that while I do my best to hold it all together, inside, sometimes, I am falling apart and sometimes, that's okay.

An Open Letter to Professionals

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…


I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.
My slightly-broken, definitely-bruised heart.
Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…
You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….
You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…
But regardless of what you see, what you think, or what you believe, this is what you should know:
I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.


Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.