For Christianna on Her 4th Birthday

Biopsy and Stander update

According to our results, Christianna does not have a mito. disease. And the EEG came back with abnormal brain activity, but no seizure activity.  Not much skin brake-down at all either.  As we were told before, abnormal brain activity is... Wait for it... Wait for it... NORMAL for folks w/ epilepsy!  Bazinga! Not really a bazinga, seriously, but bazinga is fun to say.

The stander looked as lovely as a stander could, I guess.  However it was not a good fit for Cianna as she kept hanging herself by the chest strap.   Around nine months of working on getting it for, nothing! 

Maybe it's for the best and God is protecting her so she can freely move?  We shall see.

She looks miserable right. 

Ft. Wayne And Onward!

Well we are here!! A long awaited trip.  This is our second trip with an Anat Baniel Method practitioner. Mr. Jon Martinez is the practitioner here in Ft. Wayne w/ Movement Matters.

Joey took these shots...  So they're sort of silly.

Jon observed that Christianna moved her hips well and her head well, but the connect between the two wasn't really there.  In the second lesson her movement was more fluid.   He worked on her rolling some and was rolling her back and forth from side to side and one of those times her head continued to roll so that it was tucked underneath.  So she roller from back to right side with her body facing right/ down to belly, but her neck continued to roll and was facing almost opposite.  It sounds weird , but looked good. We shall record more tomorrow.

Muscle Biopsy and EEG's

    Christianna had a shorter seizure in late Dec.  Looking at it now I think she's had severe regression in her vision from this.  From this seizure we visited her Neuro and did an EEG in office that day which showed abnormal brain activity which...  wait for it. Wait for it. Is completely normal for folks with epilepsy.  So he also wanted to set up an MRI and since she had to be put under for that I decided to have him go ahead and order the muscle biopsy that we had postponed.
    On Feb. 5th, Mimi's birthday, we celebrated with an MRI and biopsy.  The biopsy is to detect a mitochondrial disease. We should get results back from different labs here in the next four months.
As of lately her physical therapist thinks she might be having drop seizures during PT so we have touch based with neuro and we are setting up a 72hr home EEG. FUN, At least we won't be living in a hospital for it, however we will keep her home from school as to not freak out the other little kiddies or chance the leads being tugged on. Heck thinking about it now I guess it means 72hrs of watching her and making sure that she doesn't tug them off! Ouch.  I do expect skin breakdown on her scalp as this happened before with a longer EEG.

A Kiss From Heaven

I saw this story in the Huffington Post fwd: to me by a dear friend.
http://www.huffingtonpost.com/paul-gondreau/dominics-gondreaus-special-vocation-to-show-people-how-to-love_b_3001103.html

So true!   I realized this many months ago and expressed it to a few, but not 
in the same words or with any conviction. Now I have the conviction and will 
try my hardest in low low times to remember it!  They are here to teach our 
crazy society, back to basics.  Love.  I had somehow..., come up with the idea that maybe the reason there seem to be so many special needs people is that this world needs them.  They don't wear their pants hanging off their butts.  They aren't  going to become hooked on meth.  If they grasp sex, they won't usually have sex without a real loving relationship.  A lot of them don't get the "bigger" things in life...  or do they?  Maybe it's the rest of us that are "special." 
They are genuinely happy souls.   Now this doesn't cover every special needs person, but someone like Christianna or her close friend with autism, yes.  
     About two months back during a religious education parent class on, "What the heck happens to us when we die", I came to the realization that people like Christianna are the only people currently walking this earth that will never commit a sin.  This sounds so little, but to me it is HUGE as I sin daily in one way or another! 

    Oh and this lovely, thank God he/she is in my life, friend also told me something that ended with the words something like (sorry bad memory on details but the point taken), "maybe your purpose is for other moms to look at you & see what grace moms like you have given your situation in life." Which translated in my head to those other mom's saying, "What do I have to be upset about with my child, how do I have the right to throw in the towel or lose it.  Look at her and how gracefully she goes through her life with a child like that to care for."  Also makes me try to remember to live up to this with outsiders at least, not those in my cabinet.  Y'all get the real ungraceful me!
The videos.
1.
http://religion.blogs.cnn.com/category/catholic-church/pope-francis/

2.
http://www.nydailynews.com/news/world/family-moved-tears-pope-francis-embraces-disabled-son-article-1.1308663?localLinksEnabled=false

  
   The mother's name is Christiana!

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.

Where We R At Today

Cianna was extubated yesterday.  Today they took off the EEG, I gave her a shower cap shampoo. (it is a showercap that you warm up then put on and it has a shampoo in the cap that you do not need to rinse. Her hair is still sandy, however no more glue like spots on her head. She did get a few spots that are really red as the skin breaks down with prolonged exposer to something touching it. :(  So Bacetracin for that.  Her NG tube came out.  We went from vapor treatment in exterior oxygen (the one on the nose) to only tube there.  HO2 turned off.  She was biting on a blueberry lollipop last night ,not actually breaking off pieces.  Today she had some peaches baby puree off of a spoon, she is sooo tired. Joe and i are taking an epilepsy class @3pm, then he goes to work.  We are blessed to have him for our daddy, husband and provider.  We will be attempting bottle feeding tonight and some more baby food.

Sunday, May 13

C-ianna is still in PICU with a breathing tube and an NG tube.  There was talk about removing the tube, but due to swelling in the esophagus, she's being given a round of steroids for 24-hours to see if the swelling will go down.  The EEG isn't showing any abnormal brain activity, so the seizures are under control.

She also has a tube in her shoulder area for drawing blood, so she doesn't have to get poked every day.  (She's going in for minor surgery tomorrow (5/14) to put it in a better location....)

Lin has no access to a computer unless the library is open, which is only during weekdays and every other Saturday from 1p-4p.  So returning emails and updating this blog are not convenient.  (I'll be happy to share any comments with her if she hasn't read them by the time I speak to her.)

There is a Ronald McDonald House right inside the hospital, as well as one down the road a bit.  (Children aren't allowed to stay at the one within the hospital, but can stay at the one down the street.  I think Lin is on the waiting list for that one, so that Joe and Joey can come stay with her.)

Outside of the old hospital Inside the new hospital.

The nice (?!) thing about all of this is that they are in Indy, therefore near friends and family.  I love calling on Lin to check on her and she wants to call me back because someone is there visiting!  (Give her a hug, too!)

I Don't Want To Do This Again

This just sucks!  After talking thouroughly w/ the neuroligist specialized in epilepsy here at Riley,  I think I get it that the Keppra dose was probably not doing much and the pheno... was doing all the work. We are starting topamax tonight. 1% SIDE EFFECT KIDNEY STONES.  Any history of kidney stones... yup. so we shall see. I guess we will have to accept in life that w/ Cianna, we might always move 2 steps forward and be greatful for them prior to the 1 step back (that feels like square 1.)

Maybe we shouldn't have changed those levels....

Christianna is in the hospital again.

I believe her neurologist wanted to bring down the level of Keppra she was on, since it was such a high level, and I believe that was done this past Monday.

Last night (Wed), Lin noticed C's leg twitching.  She gave C her meds and kept an eye on her until about midnight.  Around 3 am, Lin woke up and C was seizing.  Lin gave her the emergency meds and waited about 3-minutes, when she called 911.  She let the dispatcher know what was going on and the she didn't know how long she was supposed to wait for the emergency meds to kick in.  The dispatcher said not to worry, someone would be sent out and that they might night even need to take C anywhere.

Unfortunately, they DID need to take her to the hospital, where she is in ICU and still seizing.  :-(

------------------------

I spoke to Lin this evening - they got Cianna to stop seizing, but when they lowered the meds, it started up again.  She's hooked up to an EEG and is sedated.

To our Golisano family :( We miss Y'all!!

Been thinking about y'all up north there. :( Miss you guys, not the events surrounding our meeting though. LOTS of doctor visits, and therapies, trying to set up Medicaid coverage for her, and SSI disability $$. (We'll see what they'll give her) 

I quit the day job since I've been home and  it feels like we are doing 1-2 appts. every weekday!!   I think I'd go crazy if I was supposed to be working on top of that. Trying different ways to give her the meds as she does NOT, NOTNOTNOT like the syringe way. Got the Keppra in pill (yes huge pills and bitter) form and am currently getting all pills in for the last two days in peanut butter.  It is scary adding it to her bottle as, "What if she doesn't drink it all?" crosses my mind. So I probably always put it in too little as I don't want to have to syringe the rest in. SOOOOOOOOOOOO yah....

She is sooooooooooo happy to be home - the first night we were home we ate at Fazoli's with brother, Joey, and Dad, Joe too, Well she kept getting entertained by her brother and was shrieking with joy quite loudly!

Eating is still an issue - we are coming in way under appropriate levels (20oz a day give or take). However the swallow study yesterday (very cool to watch on video by the way) showed partial penetration on thin liquids so we are now thickening up her fluids a bit with the thickener and other random food items. We won't get to see the Neuro. Genetic doctor, until July 13th. however I believe we will be able to get into the feeding clinic in June for an evaluation.  Until then, I get to investigate what to do to rehab a child who has suffered... to eat again? (I should e-mail Melissa)

We'll see where God takes us next on this adventure with Cianna.  If we need to do a G-tube, we will, though you can bet I'm going to try my darnedest this month to get more in daily, hopefully with time and less appts. every day.  (After all, it took her 2 weeks to eat normally again after the flu three months ago.)

Anyway I hope all is well in your personal lives as I am sure there are new patients with bad crap happening in theirs which makes work emotionally challenging for you.
Take care,
    
    Lin Devine

Laughing, again

Mimi, Lin and Cianna are at the Ronald McDonald House near the Upstate Galisano Children's Hospital.  The other couples staying there have preemie infants in NICU, and there's a woman from Guam who is there with her son, daughter-in-law and grandchildren (ages 1.5 and 2.5).  Her son was in a car accident and the daughter-in-law called and said they were in Syracuse and that she had to go in for an emergency c-section.  So the woman had 4-hours to get from Guam to N.Y.  Both the son and d.i.l. are out, but now their baby (2 lbs) in in the NICU. 

I was on the phone with Mimi tonight and heard this screech and she said, "You hear that?  That's Christianna."  I thought it was an unhappy screech, but she's been laughing and enjoying watching the above mentioned grandkids run around.

And rocking on lions.

The gang plan on leaving tomorrow morning, stopping in Akron, OH and being HOME by Saturday!!!

OK I'm Going To Get The Car!!

So we will stay at the Ronald McDonald house for two nights then leave town on Fri. We will spend the night in Akron, Ohio, then home on Sat. to give me plenty of time to buy all types of long awaited chocolate. Of all the Lents I've had before, why did he place on my heart to give up chocolate this one??? It sure has been great focusing a lot of time on/with God! Thanks for all of the prayers.

Finally!!

Blessed be God!! We are checking out today!!! According to the DR.s no GTUBE more to come.