Tuesday, February 28, 2012

some good news and another diagnosis?

So I didn't post last week.
We had seven appointments in just three days.
It was a bit overwhelming.
This week we only have 4 appointments for Lily,
4 in a week is MUCH more manageable than 7 in 3 days...

So the good news is she is no longer delayed from a gross motor standpoint.
She will probably be released from physical therapy for a while so we can focus on ot and ft.
We are so so so pleased that she walks!!

The other good thing is we have IVIG tomorrow and
we went the
 whole three weeks
 without an ER visit or an admission since the last IVIG.

Now, for some not so great news.
Two weeks ago Lily had stopped tolerating her bottles and her g tube feeds as well, 
She went from tolerating 5oz in a bottle at one time back to 3oz at a time
if she accepted at all.
It took us 9 months to get her to accept more than 3 oz at a time and it
was incredibly frustrating to have her regress back.
Plus, she had crazy amounts of gas and pain
and had severe diarrhea
which burned her diaper area.
The Doctor said she had a bacterial overgrowth in her gut
 due to the huge amounts of antacid meds she is on
 combined with the iv antibiotics she has to get every so often.
So, They put her on Flagyl (a strong antibiotic) for 7 days
To kill the excess bacteria.
It seemed to work.
but her diarrhea never ceased.

About 18 hours after the last dose of Flagyl,
She spiked a fever.
It has come and gone for the past week.
It never stays long though so they don't feel she has to be admitted
Then her gas came back
 and this time she has been vomiting during the night.

We saw the GI today
She said it was the overgrowth coming back so we will be doing 
a week of flagyl once a month now.
She said it was common in mito kids.
She also looked at the burn/rash she had from the diarrhea and
said it had turned into a raging infection and we had to start steroids right away on it.
She kept emphasizing it was bad and to watch it closely because of her immune deficiency.
Its treated with a good (painful) cleaning and steroids 4 times a day for a week.
Then the part I wasn't expecting..

Another diagnosis?!?

She said she had been suspecting for a while
 but had just confirmed that Lily has 
Visceral Hyperalgesia.

She then sat me down and told me that just from a GI standpoint alone
Lily was gonna have a tough road.
Things were gonna keep coming up and we were gonna have to follow her very closely.
Treating her will be tricky and difficult.
It will unfortunately take some trial and error.
This new diagnosis is just one of many to come as the mito progresses
And that's just from a GI standpoint.
Now she wants to see us every 4 weeks instead of every 6.

During this whole appointment,
 by the way,
Lily was having a total meltdown like she has every day this week
and was 
the whole time.
The GI did a fantastic job of speaking over the screaming.

That brings me back to her new diagnosis.

"Visceral Hyperalgesia,
 which may also be called Visceral Hypersensitivity,
 is a term that simply means an individual has increased sensitivity to pain
 in the visceral system of internal organs
 like the stomach, intestines, or pancreas.
 Normally, when one eats or drinks, 
the stomach and intestines stretch
 to accommodate the meal with no discomfort whatsoever.
But in a child with Visceral Hyperalgesia,
 the mere act of filling the stomach or intestine
with a small amount of fluid or food triggers the nerves in the gut to respond as if a
painful stimulus has been introduced.
What is painless to most children
 feels excruciatingly painful to children with Visceral Hyperalgesia.
 Children with this diagnosis
 commonly have pain responses to one or more types of agents: 
pain due to digestive processes such as food entering the gut 
or liquid stretching the gut; 
significantly increased pain due to infections, viruses, 
or other external insults on the gut;
 and a pain response to psychological events such as anxiety or
fear."-Complex child emagazine

So not only is Lily in pain whenever food hits her tummy
(which we kinda already knew)
She has a pain response to anxiety or fear.
This makes so much sense
 and breaks my heart.

She has a sensory processing disorder.

Fear and anxiety, are her constant companions.

She is getting overwhelmed almost every time we go to a store.
Sometimes, (Saturday morning or at church Sunday)
 she just shuts down and its not to obvious, 
other times like Saturday afternoon or Monday, or today at the Dr's,
She has full on screaming, crying, kicking, hitting, tearing at her skin, head banging fits.
Then she starts screaming "ow, ow ow!"
And cries more.
I knever knew what to make of it.
Now I understand.
Her body has a pain responce to fear and anxiety.
And I feel helpless.
I can only pray that God will help her.

The "good news" is she will now be starting a 
low dose pain medication.
At least she will get some releif.
Also, next month we will be starting her on pancreatic enzymes
To try to preserve her pancreus.
And we will be monitoring her Liver very closely now.
Pancreatitis, and or Liver disease are very common with kids with this 
with mito kids...
Sometimes it feels like the deck is so stacked against us.
I just remind myself that
GOD is in control.
Its my new mantra.
"God is in control."

Sunday, February 19, 2012


SHE CAN WALK!!!!!!!!!!!!!!!!!!!!

We honestly didn't know if she would be able too!!
And She can!!!! 
This afternoon she was crawling, and then she just stood up
and started walking.
she was a bit shaky at first, but then she gets the hang of it.

She walked back and forth across our living room nonstop for 45 minutes!
We are so so so excited!!!!
She kept clapping and saying "yay"!!!
(Sorry the videos are sideways, they were taken on a phone and we are unable to rotate them)

Friday, February 17, 2012

Some days

Some days,
I look around my house at all the necessary medical supplies and I cry.

Some days,
Things seem to be going so well that I almost forget Lily is sick...almost.
Some days,
I feel so worn out I think I must be transparent.

Some days,
I just cant stop smiling because we are so blessed.

Some days,
the very sight of her tube makes me want to scream out loud in defiance of it all.

Some days,
her laughter is so infectious that I laugh till my sides hurt.

Some days,
I feel so tense from the anticipation of her "next symptom", 
that my heart might pound out of my chest.

Some days,
its hard to keep the happy tears from flowing all day long.

Some days,
Its hard to keep the sorrow tears from flowing all day long.

Some days,
I rejoice in my motherhood, and joy in every little task.

Some days,
 my heart feels icy with the fear of what the next moment will bring.

Some days,
I look at how far she has come and I marvel!

Some days,
I cannot do it on my own and I know my Savior is carrying me and Lily.

I give thanks to my Lord and Savior for the blessing of Eternal Families.

I LOVE my family.

I find comfort in the phrase
"BE STILL and know that I am God"-Psalms 46:10
I trust in God's will,
 with every stitch of my soul,
And I know I am nothing, and would have nothing without HIM.

Wednesday, February 15, 2012

Your questions answered!

Q: How long will Lily have the tube?

A: Unfortunately there isn't an exact answer. She will have the tube as long as she needs it to survive. At this point she isn't improving at all in her dysphagia, actually she is getting worse. If she keeps getting worse they are gonna take oral feeding completely away. And over the past couple weeks she has started refusing again. It took 9 months to get her to accept more than 3 oz at a time, and now she is back to 3 again. So, as of right now there is no end in sight as far as the tube feeding goes.

Q: How long do her feeds take/can she move around while being fed?

A: She gets fed for 10-12 hours continuously every night while she is sleeping, and for a while after she wakes up in the morning. She is on a relatively slow rate of 55ml(approx. 1.8 oz) an hour. During the day she has a goal of 12oz by mouth, I try and give her 3 bottles of 4oz each, but as she refuses I then have to bolus feed her (put the formula in a giant syringe and push it slowly through her tube). Occasionally it isn't safe for her to eat by mouth at all (like when she is super sick) So she sometimes has to go on continuous 24 hour feeds. She can move around while being fed I just have to follow her around holding the pump. As she gets older and hopefully stronger there is a backpack she can wear to make the pump more mobile.

Q: Can she be potty trained when she is old enough?

A: Maybe...kinda. It all depends on how weak her core muscles are and  weather she will have the ability to strengthen her muscles enough to be potty trained. Then there is the feeding tube. If she is strong enough there is still the issue of her being fed continuously while she is sleeping. From what I understand it is sometimes possible to potty train tube fed kids during the day but not a realistic goal for over night potty training. She will need diapers at least overnight as long as she is fed overnight...

Q: Does her tube hurt her/is it sensitive?

A:The tube doesn't hurt her unless she tugs on it or it gets caught on something. I have to spin it daily (which she doesn't even notice) and We have recently discovered she is super ticklish all around it and will actually laugh out loud when we poke her skin around it (laughing out loud is exceedingly rare for her).

Q: What is it that makes her able to handle some foods and not others?

A: Eosinophilic Gastroenteritis is the main culprit for her being so sensitive to so many foods. Because of her Eoe, she has many many allergies/intolerance's. Then there is also the issue of her dysphagia/silent aspiration, For things that are safe to eat from an allergy stand point, they still aren't safe for her to swallow. Like water for example, every bit of water that is swallowed goes into her lungs, so if I were to give her a 6 oz bottle of water she would drink it and would drown. On days when she is teething and has excessive amounts of drool we have to constantly listen to her lungs because it goes to her lungs and she doesn't consistently cough it up (silent aspiration).

Q:Will Lily be able to attend regular school?

A: Honestly, probably not. Her immune deficiency makes public school way to dangerous. Plus the nature of Mito is, it is progressive, and so by then she most likely will be sicker than she is now. Arizona's special education programs (in my opinion) are sorely lacking. She will either be home-schooled, or preferably she will go to a private school where they are equipped to handle medically complex children. So far it looks like she is cognitively fine, even gifted (YAY!) as far as intelligence goes, so that also poses a challenge for schooling her because finding a program that can tailor to her physical needs but still challenge her intellectually is hard to come by.

Q: Is Lily a million dollar baby? (Do her medical bills before insurance equal one million yet)?

A: If my calculations are correct, then yes. Just between her hospital stays and her IVIG alone equal 1 million. That doesn't even include all her doctor appointments, medicines, equipments, therapies, etc. 

Q:Are we considering having more kids?

A: This is a tough one. We definitely will have more kids there is not question in our minds about that, but as of right now it looks like we will be adopting. The percentage of having another child with Mito is extremely high, and well, lets just say it is not something we are taking lightly. The decision will be made through much prayer and meditation on the subject and ultimately we will do our absolute best to do God's will. 

Q:What does the future hold in store for Lily.

A: This is what my nightmares are made of now. Mito is progressive that much we know. But the thing we do not know is how fast it will progress or what will be affected next. Most common symptoms include:

  • brain: confusion, memory loss, headaches, seizures, developmental delays, and stroke-like episodes
  • nerves: pain caused by nerve abnormalities (neuropathic pain), gastrointestinal problems linked to nerve abnormalities, abnormal sweating, and fainting
  • skeletal muscles: muscle weakness, muscle cramping, muscle pain, loss of coordination, exercise intolerance, and poor growth
  • liver: liver failure and low blood sugar (hypoglycemia)
  • heart: heart muscle weakness and disturbed electrical signals in the heart (called heart block)
  • kidneys: abnormalities that cause difficulty with absorbing nutrients and electrolytes back into the body (called Fanconi syndrome)
  • ears: hearing loss
  • eyes: eye muscle paralysis, progressive loss of vision
  • pancreas: diabetes (a group of conditions characterized by excessive urine excretion and persistent thirst) and pancreatic failure
  • Sensory processing disorders, or autism
Other symptoms include failure to thrive in infants, poor growth, short stature, fatigue, respiratory disorders, swallowing difficulties, and increased risk of infection.

Read more: http://www.answers.com/topic/mitochondrial-disorders#ixzz1mV1wSD4r

Only 20% of children with infant onset Mito will make it to adulthood, and out of those 20% very very few will see their 30th birthday. It is a cruel and sinister disease.

Not two people get mito exactly the same way, and just because somethings aren't listed here doesn't mean it can't be caused by mito. Mito is a guessing game at best, and since there is not cure and no real treatment we just take one day at a time and we and her doctors are forced to watch every little change closely and decide if it is a symptom or a personality quirk or a "typical baby thing". Kids with mito can go from acting and seeming fine to complete system shutdown within hours. That is why everything is watched so closely. The sooner we catch a new symptom the sooner we can stop it or at least slow it down, if possible.

The future terrifies me. I am doing my best to live here and now, because that is where we are and that is where I have her safe in my arms. We have to just keep swimming. And we will accept God's will in ALL things. He is in control and He knows whats best in EVERYTHING. I trust him with my life, and soul. And I trust him With Lily's as well. I will have her as my daughter forever. That I know. And no matter how long any of us are on this Earth we will be together forever and ever in Heaven. 

Friday, February 10, 2012

Feeding tube awareness week - a day in the life & what I want clinicians to know

Today's topic is:   
What do you want clinicians to know about the day-to-day life with a feeding tube?  

This post for me is gonna be pretty short because
basically yesterday's post covered the majority of it.
I just want the doctors that don't understand feeding tubes to attend a seminar or something,
and for the ones that do,
like our fantastic GI,
Or our new developmental pediatrician,
I feel like they already understand
what day to day life with a tube is like.
well, as best as they can without  actually living it. :)

I am fine with the doctors not totally understanding being a parent to
a medically complex child.
Its not their job to be a parent that's my job.
I just need them to understand enough that they can do their job as a doctor.
That's all I ask.
And luckily we finally have a team of 
16 doctors and specialists
Who all understand their specialty
and are in fact fantastic at whatever their specialty is.  
Its only taken us a year to build this team, 
And that is a relatively short amount of time.
A LOT of families with medically complex kids look for years
before finding "the right mix of doctors"
if they ever do...
We have been truly blessed to have this after only a year.

The topic I missed was: 
Understanding Life with a Feeding Tube.
Explaining a day in the life/daily routine of tube feeding... and all it requires.

Well the biggest thing about
Life with Lily is she has different symptoms day to day
some days she acts almost completely healthy
most days she has just a few big issues
and other days she can hardly move
This really makes a difference in our daily routine.
I will try to explain our day as best I can...

8:00am-hopefully Lily is just waking up, with coo's and babbles,
if she wakes up screaming it is a sure thing it will be a VERY BAD DAY.
And we almost always will end up in the ER within 24 hours.
I turn off her pump unless I had to add more than her normal 18 oz to her night feed
I change her soaking diaper
check her temp
clean up any vomit
and if she fed the bed, clean that up.
I give her her morning meds then take off her extension
change her g tube dressing 
put ointment on her eczema spots and on her scars
and get her dressed
and lots of kisses and loves :)
Most weekdays we have a morning appointment
so we go to that
otherwise we go for a walk
which usually brings us to;
11:00-I give her more meds and
change her diaper.
If she feels warm I take her temp
11:10-She gets to have her first 4 oz bottle
if she doesn't finish at least 3 oz
I put it through the tube
Which entails attaching the extension, making more "non-thickened formula"
putting it into a 60cc syringe and slowly pushing it in
then unhook the extension, rinse it all out, and pray she doesn't puke.
11:40-1:00-floor time, or "therapy homework"
1:00-we can try to give her solid food if she is physically able to have it that day
2:00-Diaper change then Next bottle 
Whatever she doesn't finish goes through the tube
2:30-I try desperately to get her to take a nap
(It usually doesn't happen, but when it does she sleeps from 1-3 hours)
3:30-If she hasn't gone to bed by now she isn't going to...
So, if she is awake we go for a walk
or she gets play time, or whatever
This is the most unstructured part of the day
I LOVE this time of day
And if she IS sleeping I catch up on chores and if time blog,
or maybe just maybe read.
5:00 -time for her next bottle with special vitamins added
check temp and change diaper.,
5:30- work on "therapy homework"
6:30-bath time, lotion massage,
attach extension tape it down, and get in pj's
7:00-8:00- start putting her to bed depending how the day has gone will determine
weather its closer to 7 or 8 that I start trying.

Putting her to bed is a challenge.
Usually I rock her and pat her for 1-3 hours.
Sometimes I get lucky and she goes down really fast
(That happened three times this past week!!!)
But usually, It takes a lot of calming and rocking.
I would love to just put her in her crib and let her
"cry it out"
but because of her health issues I cannot.
I have tried it quite a few times and this is what happens:
Her heart rate rises way too much
and she screams until she vomits
and then screams BECAUSE she vomited
and then Vomits more and more
until her screaming causes an asthma attack.
Which needs an albuterol treatment which makes her scream,
then she becomes jittery and hyper...

Once she is asleep
(Usually about 10, but can often be 11 or 12)
I make 18 oz of formula, put it in her feed bag
attach the bag to the pump, prime the feed,
Put an ice pack in the bag with the pump,
give her her last med, attach the extension to the bag and start her night feed.
If she is coughing, and wheezing a lot I give her a breathing treatment
I then do any housework that needs to be done, 
and finally go to bed.
On most nights her pump will alarm, or she will wake up fussing or coughing or choking
and so I usually get up at least once a night.
That about sums up the AVERAGE day for us.


Thursday, February 9, 2012

Feeding tube awareness week catchup...

So, I missed a couple of topics for Feeding Tube awareness week,
I am gonna try and catch up...

Yesterday's Topic was: 
How has your attitude/family/friends' attitudes changed towards tube feeding? 
What has awareness of the positive benefits done to change perceptions? 

About a year before I became pregnant with Lily 
I met a woman whose son was fed through a G tube.
I remember being shocked, and
confused as to how that would work
I also remember telling her
She was amazing!
And I didn't know how she did it!
"I could never handle something like that"

I now understand that a parent can and will do whatever is needed
And apparently I CAN handle it :)
And by the way,
the woman I met back then IS AMAZING
and I look up to her.
She is an example to me in more ways than one!

I also understand that the feeding tube is 
A blessing to the children that need it,
Even though it brings heartache and headaches too.
And that it is the difference between life and death.
I was AMAZED by how simple this life saving technology is.

And now I see it as a part of my daughter.
I love everything about her
including her tube.
because without the tube
I wouldn't have her.
That doesn't mean I am happy she needs it,
not even close.
And It took quite a while to come to peace
with the rubbery plastic thing poking out of my daughters stomach.
But I do NOT want her to hate ANYTHING about herself
and since it is a part of her,
I HAD to learn to
accept, embrace and love it.
And so that is why I proudly promote awareness, and wear buttons, and shirts.
And tell anyone who asks more than they ever wanted to know about tube feeding :)


Today's topic is:

The need for greater awareness in the medical community -Explain a situation where a clinician didn't understand tube feeding and what was the impact.

(The goal here is to point out that awareness is needed among all audiences. Certainly there are clinicians who are well versed and expert in this area, however, there is a need for basic knowledge among a wider range of medical professionals)
Ha ha ha...
This topic makes me laugh.
I have so many many stories about naive doctors making careless comments
Its hard to choose.
I will tell about our lovely doctor from our hospital stay last week

This doctor (lets call him Dr. Silly)
came in to check on Lily last week
we had, had Dr. Silly once before and I wasn't pleased with him then either.

 Basically Dr. Silly walked into the room without even looking at her chart
He asked me why we were there and I told him.
He then began the routine check over all doctors do.
When he walked in she was just finishing 
3 oz out of a bottle.
As he lifted her shirt,
he furrowed his brow and pointed at her g tube then at the empty bottle
and said "well why does she even have that?"
I started to explain her long list of diagnosis'
(which are on the FIRST PAGE OF HER CHART! I know cause I peeked...)
 He cut me off.
He didn't understand that just because she has the ability to drink from a bottle,
that she lack the ability to get ENOUGH to survive from a bottle
and on some days she is completely UNABLE to drink at all.
He then told me he didn't understand why we were here cause she didn't 
"look sick"
(She sure looked sick to me)
So I told him about her white count, and her other diagnosis'.
Any ways the story goes on and on
but I don't want this to turn into a HUGE rant about him,
So lets just say We won't be seeing Dr. Silly again while we are there.
I also want to point out besides bringing me ( a stressed and scared parent) to tears,
the impact from him not understanding tube feeding was quite small.
We had a different Dr. the next day
And she was phenomenal.

But in another situation the impact was HUGE.
It started with the lack of understanding from Lily's first Primary care doctor.
Her doctor SHOULD HAVE sent us to a GI immediately.
Lily couldn't suck or swallow.
She vomited and screamed for hours a day.
Lily was not gaining weight and fell far off the growth charts.
I kept calling her doctor and telling her something was wrong.
I think she just didn't understand what to look for and
when a GI referral was important,
or when a patient was beyond her expertise.
I finally had to tell her to send us to one.

When her first GI took a look at her she was 
She was talking about how serious it was.
I knew something was wrong but had 
NO CLUE she would need a feeding tube,
or that she could have brain damage from being so malnourished.
I SHOULD have pushed harder for her doctor to do something,
I should have switched Dr's, 
I should have realized she was sicker than I thought...
but in my defence I was a first time mom,
I was new to the whole "being an advocate for your child thing", and 
I was not the one with a PHD...

I just think that if that doctor had been more aware about
feeding  tubes and when a child needs to see a GI,
Lily wouldn't have suffered quite as much in the beginning.
And maybe she wouldn't have sandifer syndrome...
Hopefully, the Dr. learned a bit from Lily and wont let another child go as long
without a referral.

I also missed Tuesdays topic and will try to catch up tomorrow...

Monday, February 6, 2012

Feeding tube awareness day 2

Today's topic is
"why my child has the tube they have now?"

Lily has a Mic-key button 14 french 1.5 cm

Thats "medspeak" for she has a g-tube
The reasons she has a feeding tube are varied and complicated
She originally HAD to get a feeding tube because she was so malnourished 
She was way below the growth charts,
She was scarily skinny.
At that point the doctors had 
NO IDEA WHY she was so sick.

We since have found out she has many many issues
Probably all caused by Mito.

Basically everything she swallows has to be thickened and go through
a special bottle nipple.
anything less than honey thickness goes straight into her lungs.
And she doesn't always cough it up,
Which can lead to pneumonia or even drowning.

Honey thickness is very thick and she has to get it through such a slow flow nipple that
Its exhausting to drink.
a definition of thickened liquids can be found here

She also has dysphagia which further complicates things
because it means she has a poor suck and swallow.
She often starts breathing hard and sweating just from trying to drink.
So she only drinks by mouth maybe a third of what she needs to survive daily
So the rest has to go through the tube.

Also she has many food allergies
and has Eosinophilic Gastroenteritis,
her stomach and bowels swell and cause significant pain when she eats.
The pain from eating has also caused some slight feeding aversions
which have improved greatly with getting her Eos under control.

She also has such severe GERD,
That it caused Sandifer Syndrome.
She also has motility issues that come and go
sometimes her stomach just doesn't empty
or sometimes her bowels just wont move for days.

All of these diagnosis' are explained in much more detail 
on my post Here

Any ONE diagnosis is reason for a child to get a feeding tube.
Lily just "lucked out" with many reasons.

Sunday, February 5, 2012

Feeding tube awareness week

Today begins the 2nd Annual Feeding Tube Awareness Week!
There is a different topic that I will be blogging about everyday this week.
The topics are found on the FTA website
Today's topic is
"Why awareness is important to my family"

Spreading awareness is important because with awareness
comes sensitivity, and knowledge.
The more awareness spreads the better care our children can receive.
We recently had a doctor (yes a doctor)
that didn't understand feeding tubes at all.
He made some incredibly naive comments
and he was just incredibly rude.
With more awareness doctors would have to learn more about it.
Maybe if Lily's original pediatrician had known more about feeding tubes 
and reasons children get them
Lily wouldn't have become so dangerously malnourished.

Also, It would be so nice to have people understand
That just because a child has a feeding tube does not mean 
We as parents have failed.
There are many many reasons a child has a feeding tube.
I will go into lily's reasons on a different day.

Mostly with awareness comes understanding
And I would love for Lily to grow up in a world where
feeding tubes are better understood and
where being fed trough a tube in your stomach
doesn't terrify anyone who sees it.
I worry so much about how other children will react to it
as she gets older.
That is basically what it means to me in a nutshell...

Here is the feeding tube awareness video
Lily and Shaun are in it at 2:12
This video shows 222 families with "Tubies"

Saturday, February 4, 2012

consider the lilies

Consider the lilies of the field,
How they grow, how they grow.
Consider the birds in the sky,
How they fly, how they fly.

He clothes the lilies of the field.
He feeds the birds in the sky.
And He will feed those who trust Him,
And guide them with His eye.

Consider the sheep of His fold,
How they follow where He leads.
Though the path may wind across the mountains,
He knows the meadows where they feed.

He clothes the lilies of the field.
He feeds the birds in the sky,
And He will feed those who trust Him,
And guide them with His eye.

Consider the sweet, tender children
Who must suffer on this earth.
The pains of all of them He carried
From the day of His birth.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold. 

Friday, February 3, 2012

pictures from today

here's a couple pics from today

 the redness comes and goes with these random heat waves
shes been having
then she goes all blue/pale and mottled
and gets freezing as her temp drops...
Sometimes its only on her legs and hips and sometimes only her face
She only had 3 or 4 of these today and the one in the pic
didn't get bad at all, and that one wasn't followed by a cold spell...
The antibiotics seem to be working cause she seems to be feeling a little bit better
at least she feels good enough to throw her toys across the room...
any improvement is good...
Plus She made a HUGE breakthrough today she let
Rachel and Alicia HOLD HER!!!
It was a huge deal!!!!

Not sure what to make of all this...

So I have so many many emotions going through me right now
relief that we didn't have to have surgery
but frustration cause we still might have to,
Anger at the Jerk doctor that just came in here an made me feel 1 inch tall and an
Overwhelming desire to get that doctor to see and listen
Guilt for feeling that anger.
Fear, so so much fear for what lies ahead.
Physical and emotional exhaustion,
Sorrow, for my sweet daughter and her pain and suffering and fear
at the incredible out pouring of service, kindness and love.
So many many people have reached out to us.
I feel so undeserving.
I am amazed by how many people love and care about Lily.
Ashamed that I can't do more to help her and others.
Overpowering LOVE 
My Savior and Redeemer Jesus Christ
And For My sweet daughter, and husband and family and friends.
Mostly I want to scream, cry and laugh.
I don't really know how I SHOULD feel,
but this is how I feel.

I also wanted to give an update.
The surgery was set for 11:30
It was pushed up to 9:30
then pushed back to 10:45
Then to 11:30
Finally Shaun told a nurse that SOMEONE needed to tell us 
So a surgeon came in and told us that there were 3 surgeons
each had a differing opinion about this surgery
and they were arguing about who was gonna do it
It basically all came down to whether 
her position in the x ray could effect the position of the cath in her heart.
So they did another x ray
It turns out it did...
So they determined her heart wasn't in immediate danger from the port
so It was gonna stay,
one of the surgeons disagreed because they think she may be septic.
we should know by the morning if she is.
That would be very bad.
I am not thinking about that unless it actually happens.
so we are just back to waiting
and just to make things even more pleasant the doctor
requested an RSV test
which means we are on precautions.
She has no symptoms of RSV and the nurse called to tell him that
but he insisted...
So that's where we are...
more waiting...