Where Life Has Taken Her Now

To start on a good note, School 114's Developmental preschool w/ Mrs. Lezly Dwyer!  This is where she was at today with her dearly devoted Daddy!   Who else gets to say, "I attended my first day of school with my Daddy there!"  

She was hand over hand assisted with scissors for the first time today!   She had 5 bites of sweet potatoes thickened up! Her teacher goes to our church.
                                       




Since June 2012 we have been BIG seizure free.  I think Cianna had a partial seizure about a month ago followed up by a pretty constant tremor of her left hand similar to an older persons hand tremoring. Dr. Pappas her Neuro doc wants to do another MRI which we are attempting to set up a muscle biopsy for mitochondrial disease at the same time since she will be under anesthesia for the MRI.  Now this is our second time to set up a muscle biopsy.  I pulled the plug on the last one because she seemed peaceful and non-regressive and not in the hospital.  However with the little ever so tiny twitches I am seeing now we are attempting it again. By the way the DNA test for mito. and POL-G test were both inconclusive and negative.  The exciting medical news is that we also did another EEG after her partial seizure and the doctor saw abnormal brainwaves.... which apparently is normal for epilepsy  folks. Oh boy!  She is now currently on three seizure meds. all via G-tube- I recommend everyone get one of these you can eat all the healthy yucky tasting stuff and meds. w/ out a blink of the eye! Dr. Pappas plans to wean her off of the Keppra eventually which scares Joe and I as the last wean is when we ended up in Riley for 2 weeks.  She has finally received her wheelchair as seen above. She is still currently not sitting up unassisted as well as all of the joyful milestones that come after that.  She is currently quite non-verbal with occasional hysterical laughs and random sounds.  We are with a new team of doctors now and are happy with their honest frankness and humble ego's.
   2012 was a hard year and I was quite happy to bring it to an end.  It was wonderful seeing God's hand in our life however I'd rather see him without all the heavy stuff involved. :)
Blessings to all of you.
Lin

Plumb - Need You Now (How many times)

Yes We Are Home!

Hopefully from now on.  We got home last night, Sat. around 6:15pm Cianna seemed fussy today, but I think this was because the pain meds were wearing off. Eating ok. via "Monkey Button" as her loving Auntie calls it.  It's been a day of rest.

That's tubular!

Cianna is having surgery today at 1:45 pm.  Mimi started to tell me about a "button" type of gTube, and I started to look it up, but was eating dinner and thought that might not me a good time to read about surgery. (I'm currently eating lunch, so I don't want to look it up now, either!)

Mimi stayed with Cianna at the hospital the past 2 nights so that Lin could stay home with Joey.  Before all of this happened, her original plan was to go back to NC today, but now she's going to stay until Friday.  I'm glad she's there to help Lin out, but it sucks that it's got to be at the hospital, instead of at home watching Baby Girl while Lin does laundry or get ready for her August garage sale!

At any rate, I'm sure we'll post more after Cianna gets "tubed"!

2:22 pm - Just got work that Cianna is out of surgery and the surgeon said all went well.  Lin and Joe are waiting to be allowed back to recovery room to see her.  I was surprised it went by so quickly and Mimi texted, "The monitor showing her "code" showed the surgery procedure began at 1:23 pm and now shows post-op at 2:07 pm."

Out 5/23 in 6/22

So we are playing the game for a third time.  At St. Vincent's this time. Sounds like Drs. are thinking that whatever is causing the seizures is also causing the regression VS. The seizures causing the regression.  We did a Midochondrial draw on Wed. and in six weeks we"ll see what those results are.  No intubation at this point seizing seems to have been stopped, and I figure we'll go ahead with a G-tube while we are here.

And I'd Like To Start This One Off With It Sucks now Back OFF!!

Need a laugh before I beat myself. So I am damned if I do... we'll try the don't approach for awhile and see how that works.
This is long winded, so to answer the running question that it will bring up in your head. She is fine now, very very relaxed, and sleeping. Might sleep for days... :)  :(
I've been very dedicated in researching and pushing the Neuro these past four days. Off hospital duty today for an 11 hour set up to break down yard sale.  Even when I arrived back at the hospital tonight I am grilling Joe with, "What did she eat?" (Only for me it's not what, it's how many oz. -which is more nitty gritty than i'd like to be) Then it's "Did they do a level today?" "48 that's higher than yesterday!" (wanting to see a bigger drop - around 10 points so my noodle baby can be more in control of her body.) So the fellas leave.
She and I are alone did a nice big bottle tonight, just finishing a long process of getting meds squeezed out of bottle nipple into mouth w/out any dripping out of mouth as she can obviously taste this mix and is not happy. So we move in chair AND she locks up-tightens, really tightens, tone all of a sudden???  So I ask her "are we having a seizure - the go to question for all oddness now - or is this an, "I gotta tighten up to poop?" It felt more throughout, not just in the abs.
Then she starts to cry and I lie her down which brings on more crying, AND TWITCHING. Too much twitching. I alert nurse 1 (unknown).  After more symptomatic twitches of different body parts I alert another person, we need the doctor here NOW she is very twitchy.  (To fast forward this event- we wait for, oh say, an hour after first gut feelings of this is a seizure starting, she told me herself. for emergency med to arrive to be given.) "WHY THE BEEP IS IT NOT IN HER OUTPATIENT OR INPATIENT FILE! SERIOUSLY!!! IF IT WAS, WE COULD HAVE HAD IT IN HER IN LESS THAN 15MIN.  Note to self: I will always have rescue med on my person, EVEN IN THE DANG HOSPITAL because the Neuro. epilepsy/seizure specialist said, "If you have a gut feeling give it to her." And then I can say, (to the doctors taking to long to get here to evaluate her, then to go call Neuro, then the Neuro eval. then oh we don't have it on order, oops! Let's call the pharmacist to order it, (I CHIRP IN HERS IS DIALED TO 7.5MG.) Oh the pharmasist says he's only doing 5mg. wait, wait, wait.) "Really, screw you guys for screwing up and shove it up her butt myself! I mean normally I am calmer and try to follow the rules, but when it comes to potential brain damage, um not so much. I said later on to resident Neuro, "So do they have it right there in the ER? Because maybe next time I'll scoop her up and WALK DOWN THERE!!"  The answer was yes.  Excuse the outburst, not a live one, but COME ON PEOPLE, GET WITH THE PROGRAM!  I'D THINK THAT YOU'D HIGHLIGHT, "HAS BIG LONG VERY BRAIN DAMAGING POTENTIAL SEIZURES, KEEP RESCUE DRUGS NEARBY.  Well if I were her Neuro I would have.
UGHHHHHHH!   I hate this because almost every other day I have this internal (well probably very external as I keep very little in) love or hate relationship with her Neuro here.  I don't like not liking her, she seems great.
So maybe I need to chill for awhile, pray, and see if God tells me, "Yes. It does suck. Now back off and let the trained folks do there job. Quit butting in. Learn to give it up and trust me, or I'll teach you this lesson again." This is the current prayer request as it seems like the more I fight it, the bigger the lesson gets.  Maybe I am meant to be a phlegmatic (go with the flow) and need to give up all choleric (controlling) tendencies.  Sounds fun. I'd love to be that person everyone thinks is so sweet, and not bossy. I guess pray that she has peace in knowing that we are all here for her.  All of us! Thank God.

A Line From A Buddy...

It Sucks. Now Back off!  A lovely line for a shirt to wear while here!  Well I don't feel that I should have to do all of the research and investigating that I am having to do, as I am not the one with the degree, however, I do.  Today I started at 4:30am with Cianna crying softly because she can't move. So then I said to a nurse after a discussion, "I am refusing meds at 9am until I speak w/ the neurologist."  This is scary to do as now adays the officials can say, "You are an unfit parent and CPS is coming to take your kids away."  Well thank God Neuro came at 8:30am and said, "Yes. Let's skip the morning dose, as yes your child does look like a noodle and needs these levels to come down a lot."  Hopefully tonights dose will be a lot lower as well as the doses from now on.  We are now out of the PICU and have no more PIVline as well as no more oxygen tubes, and no more NG tube.  She ate 11oz. in 45min. last night!!! I haven't seen this since I can't remember when. Today, not so much.  Thanks for the prayers.