A story with a happy ending

It has been a very hard week or weeks actually,

"Logically" other weeks we have had have been worse,

much much worse...

but apparently my emotions don't respond to "logic"

(I am a woman  after-all)

I think it was a LOT of little things all building up.

And the anticipation of what was around the next corner was eating me up...

But, I am getting ahead of myself,

Let me just say now that

 this story has a happy ending! 

Lily has been on the edge of another admission for about two weeks.

 She has had a low grade fever for 2 weeks, 

It only has to raise .2 degrees for them to admit her.

yes that's only point 2 degrees.

Part of me thinks they might as well just admit her now and get it over with

but the other part of me (The larger part) is ECSTATIC 

We aren't there and maybe we wont get there this time...

 

Plus, that raging infection in her diaper area I wrote about last post

is still spreading,

everyday its creeping further down her legs and up her tummy.

The doctors don't know what to do about it because we are

on the last possible cream they know about to try on it.

If it hasn't significantly improved by Friday its probably an admission.

Shes refusing food more and more.

And shes waking up screaming multiple times a night again.

The past three nights Its taken four hours to get her to bed at night.

Half of which is spent with her screaming and crying,

While I do everything I can to calm her.

She has had FULL BLOWN meltdowns every time we take her anywhere

with lots of people.

So that brings me to yesterday.

One thing after another went wrong.

among about a dozen other things that will stay unmentioned,

we had a feeding therapy appointment which was missed due to

events out of my control,

 followed by an appointment with her

new developmental ped (Who we LOVE)

which we were a half hour late to, also because of

said events out of my control...

So there was a mix up in which doctor Lily was gonna see when we came in.

We saw a nice new doctor, who only fills in for the SN clinic when they are overbooked

She was unfamiliar with most of Lily's diagnosis'

and said she was sending us to the ER for labs and a probable admission.

She told me to wait for a few minutes and she's be back with the paperwork.

I sat there dejected, with tears brimming in my eyes threatening to spill over,

feeling completely overwhelmed and exhausted.

Then a  different doctor came in and said because of the time mix up 

he was actually the doctor we were supposed to see

and so we repeated the appointment with him.

At this point Lily started to perk up.

She started giggling instead of crying and her color was getting better.

This doctor was a little bit more familiar with some of her diagnosis,

and consulted with Lily's actual doctor

and came to the conclusion we could have four more days at home!

Unless her fever rose the .2 degrees of course...

Lily then started talking and kissing everything she could get her hands on

(Including the doctor)

And blowing kisses at everyone who wasn't within actual kissing distance.

She is really more aware than I give her credit for...

This raised my spirits.

I left PCH feeling better,

Lily took a nap on the way home,

which raised my spirits even more.

I went to the pharmacy and got her prescriptions.

As I drove home from the pharmacy,

I was feeling really really good.

I was feeling so capable and content.

In my own prideful way I started to pat myself on my back

And I was thinking how I could handle anything that was thrown my way.

Then I humbled myself as I realised the reason I was feeling so light

was because of the prayers that friends, family and perfect strangers 

are sending our way daily.

I COULD NOT do this without the Lord,

and without all the prayers.

I literally feel them. 

I desperately needed them yesterday and

They lifted me up.

Thank you for your prayers.

Thank you so so so much.

 

 Lily says "Thank You" too.

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.

EVERY DAY,

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

EVERY DAY,

I LOVE my family.

EVERY DAY,

I find comfort in the phrase

"BE STILL and know that I am God"-Psalms 46:10

 

EVERYDAY,

I trust in God's will,

 with every stitch of my soul,

And I know I am nothing, and would have nothing without HIM.

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. 

New Diagnosis, the one we feared

On November 1st Lily had a muscle biopsy along with her g tube and iv port placement. We have been holding our breath for the results hoping for an answer to why Lily has had so many complications. The biopsy would tell us if she had something wrong in her DNA or hopefully rule out some very scary, very serious life changing and life ending diagnosis'.

Friday morning I woke to the phone ringing. It was the Nurse from the neurologists office calling to tell us they got the biopsy back. The doctor wanted to see us to explain the results but she could tell me that the results said "suggested Mitochondrial disease". My whole world came crashing down in one instant. I couldn't breathe.I wanted to scream, to run as far away from this information as I could. I wanted to UN-hear what I had just heard. I knew what this result meant. I had done hours and hours of research. I had suspected this disease, but it was the one I feared the most. I also knew that this result alone wasn't always enough to diagnose her but added with all her other diagnosis' and the fact that her serum ck levels were elevated.... It couldn't be anything else.

Mitochondrial disease (Mito) affects the bodies ability to convert food, vitamins, etc. into energy. That energy is what makes our brain function our heart beat, our skin grow, our muscles stretch and contract. EVERYTHING in our body requires energy. Mito patients don't produce the energy needed for their body to function properly. That is why she has so many seemingly unconnected diagnosis'. Mito is progressive and gets worse, and worse over time. There is no cure. The only treatment is special vitamins and treating individual symptoms as they occur.

The prognosis is different with every individual, some children live to be 2 or 3, some live to be 25 or older.  But as is the case with every progressive disease, the disease eventually wins.

I have had a few months to prepare myself for this I knew it was a possibility, but to have the possibility realized is crushing at the very least. I don't want this! I don't want to see my child get sicker and sicker until she can't fight anymore. I want her to LIVE. I want her to have all the things a parent naturally expects for their children. I want her to eat food. Drink water. walk, run, skip and play. I want her to be able to get a mild fever and NOT have it be life threatening. I want her to grow up get married have kids and see her Grand kids.

I am NOT without hope however. Not all of the things I want for her are lost forever. She could walk, might even run. She might one day be able to eat. I will search for a cure. We will go wherever the doctors who specialize in this are. Plus, I KNOW through God ALL THINGS ARE POSSIBLE! He can heal her IF it is what He chooses to do. Just Like Jesus healed so many while He walked this Earth, She could be healed. I can only have Faith and pray for her and then accept Gods will WHATEVER it may be. I trust Him with all my soul. I will put my Faith, hope, and her life in his hands.