Surgery update

“When you have come to the edge of all light that you know and are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly.”

This is Zeta pre-surgery.  Her daddy said she looked as if she had magical powers.  He is not always impressed with how I dress her lol.

Zeta went through her cleft repair/ENT procedures like a champ!

BUT...Who would have thought that one of the relatively more simple procedures would cause so much anxiety and exhaustion?

The doctor let us come home Saturday.  By 3AM Saturday morning I was wishing we were still in the hospital.  I'm still not quite sure what happened, but Zeta started making choking/suffocating noises and then she started turning blue - while on  the ventilator.  I tried suctioning her, but nothing seemed to be stuck in her trach.  She continued to fight for air and started turning a deeper shade of blue so I changed her trach and called for Stevie to come help me.  All the while I kept telling myself, "We need to call 911, we need to call 911." - but I couldn't stop what I was doing long enough to pick up the phone. Finally, after resuscitating her with the ambu-bag for several minutes she calmed and started to pink up a bit.  Needless to say I didn't leave her side the rest of the night! I suppose there is a lot of swelling from the surgery and all the injections.

Last night we managed a little better - except for the fact that her trach came out a few times.  She desats (loses her oxygen saturation) almost immediately now if the trach comes out- again I think due to the swelling.....

I've also been convinced that I've been seeing the smaller seizures, but today has been better so hopefully they are beginning to resolve.

I feel like crawling in a hole and sleeping (and not using my brain) for a while right about now......

Zeta has to wear no-no's on her arms for the next 2 weeks. These are braces/restraints they use to keep her from putting her fingers in her mouth.  It could probably go without saying, but she can't stand it! 
She has also figured out how to escape from the braces.  They gave us two different types and she has managed to get out of both - more than once - regardless of who puts them on...

So, today.....her nurse and I have added some socks and leg-warmers to the mix. She isn't too thrilled about this either.  By the way, she just managed to get out of one of those too as I'm writing!

Today, I am praying we have no more blue spells, no more seizures, and a speedy recovery!

Thank you for continued prayers!!

Faith is staying focused on the positive and being grateful for what you
have. Faith is trusting that the right answer to a problem will come to you -
it's waiting patiently until things get resolved - knowing that prayer can be
answered in many ways.

We've made it through another week quite uneventfully less the ear infection.  Thankfully, Zeta got over the fever and series of small seizures quickly. Her ear continues to drain - but no fever.  Every now and then we catch a glimpse of what may look like a small seizure, but still nothing compared to what we saw before her brain surgery.

We're counting down the days until her upcoming surgery.  She will finally get the cleft repaired and they will be looking at her airway and doing some other minor ENT things.  She will also have a repeat MRI to look at her brain since she is far enough out from surgery for the swelling to be gone.  While we're there we plan to have a repeat x-ray of her leg and some lab work. Please pray she is infection free by the day of surgery and that all goes well. Pray that all remnants of the tumor are gone.


On a totally different note, one of Zeta's care coordinators recently told me that she was glad I was doing a blog about our experiences.  She said that a lot of parents end up shutting everyone out and just basically withdrawing from life.  I've been thinking about this a lot lately.  Although I have shared many of our journeys in a very public manner, I have still managed to shut out some of those closest to me.  I understand the feelings of isolation and the feelings that no one could possibly understand what I'm going through...the feelings of shutting people out simply because you truly lose touch with reality.....your world goes off into some surreal orbit .... and the new reality is filled with hospitals, doctors, nurses, therapists, insurance, and medical equipment....BUT I've made it to a place where I can say....."Look at how far we've come!" 

Shortly after some of Zeta's first diagnoses I found a blog with the most poignant letter addressed to a parent of a child with special needs.  I cried as I read it over and over.....I couldn't begin to understand how my life would ever again be "normal"....but with a lot of FAITH (and stories of those who had triumphed before us) I was quickly able to catch glimpses of our 'new normal' on variable days.....fortunately those days turned into weeks and more recently I've been able to count in terms of months - 2 to be exact:)

My ultimate goal at this moment? 

To THANK GOD AND LET EVERYONE WHO HAS PLAYED A PART IN OUR LIVES KNOW HOW GRATEFUL WE ARE FOR HELPING US MAKE IT THIS FAR!!!

I'd like to share the letter with you......get your tissues ready-

 

welcome to the club

Filed under: Uncategorized — by jess @ 10:47 am
Tags: autism diagnosis; autism. autism awareness; parenting a child on the spectrum; autism spectrum

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.


You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.

With love,
Jess

Everything in life is most fundamentally a gift.  And you
         receive it best, and you live it best, by holding it with very
         open hands.
                                                                                 - Less O'Donavan

Better report!

Zeta has had a much better day!

No fever, no seizures!!  Hooray!!

Steven tried to teach her how to enjoy a lollipop.....

Maybe we should have found a smaller one!

 Zeta sure seemed to enjoy it!

But we decided we might better stop....sugar kind of makes kids in our family act a little crazy:)

Thank you for all of your prayers!!

The start of cold season already??

Zeta is sick.

She has a cough and an ear infection.  She ran fever and had several small seizures yesterday. We are working to stay on top of the fever and so far the seizures have resolved.

Please pray for compete resolution of the infection, fever, and seizures.

Pray that she does not have to go back to the hospital.

Zeta had a scheduled well-check appointment with her pulmonologist yesterday morning, but she became ill on the way there.  I am so thankful for her pulmonologist!  She is so kind, and sweet, and caring! 

Thankfully, we have pretty much always been blessed with wonderful medical staff!  (Dr. Grant-Smith, I think Zeta must be beckoning you to come home from your honeymoon lol.)

Sorry for the short update.....long night:)

Hope everyone has a wonderful day!
Angel

Open Doors

"Life is no straight and easy corridor along

which we travel free and unhampered,

but a maze of passages,

 through which we must seek our way,

lost and confused, now and again

checked in a blind alley.

But always, if we have Faith,

 a door will open for us,

not perhaps one that we ourselves

would ever have thought of,

but one that will ultimately

prove good for us."

A.J. Cronin

Concentrate very deeply on that last part........if we have Faith....change can be good for us.......

Change is often difficult.  Even wanted change causes chaos at times. 

Think about it....we work so hard to get to a certain place in life, but it never seems to be enough........

Do you ever feel like there's something bigger, something better you should be doing?

I've often felt that way.....I've felt like something was lacking.....I've felt as though there was something 'different' I should be doing with my life....I assumed it had something to do with my career.  After all, that's part of the ultimate American dream, right? I mean...have a family, set goals, make a difference?  I knew when I went into teaching that it was right for me - at the time.  I also knew that it wasn't what I wanted to do for 30 years...I wanted something different....I wanted to make a different impact on lives.....I just wasn't quite sure what it was....  When I went back to school for my Masters degree I settled on School Counseling....it would be right for me -at the time - but in the back of my mind I still had the goal of a PhD and doing something 'more'.  I worked just a few years in counseling.....and let me tell you, I loved it!!  I (thought I) had attained my (then) current goal....I was beginning to help kids more in the way that I envisioned......

Then my life changed.  I became pregnant with our third child.  This was kind of confusing.... you see it wasn't part of my master plan......but still, I knew I already loved this child......then came more changes.......Zeta was born with some health issues.......and things continued to change.......for a long time it seemed like the health issues just got worse instead of better..... I couldn't quite figure out how to fit all of it into my plan.......but.......like I've said all along......it was never my plan......

Now, I have new goals (and new plans- imagine that).........and know what? I find that most days I feel content that I'm doing exactly what I am supposed to be doing.....I'm not searching for the bigger and better things to do........ because I have FAITH that this door was opened for me for reasons beyond my understanding.....

I'm learning so much about people....and love.....and prayer....and faith.....and so much more about myself.......

I'm learning things from people who don't even know that they're teaching.........

For instance, a couple of youth groups came by our house this evening - to hear so many of these young people praying aloud for our daughter, our sons, our family..........INSPIRING is all I can say.....

To see Zeta's face light up - like she absolutely knew she was the center of attention........to see how this tiny little person brought all of us together......that's the kind of difference I've often searched for.....

To know that these young adults might rather be doing something else...,,that their leaders may have had a long day at work......but yet they came together to show us love and compassion.....

I can't explain the intense emotions of having  a special child.......

Think about the time you were most scared in your life........then think about how you would feel if you won the $100 million jackpot...now imagine those conflicting emotions together and living like that year to year.....month to month....week to week....day by day....hour by hour......minute by minute.....

Pay attention to your blessings and the doors that open for you....It may not be what you planned, but it will most definitely be what you make of it!

Jeremiah 29:11

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Miracles do happen....EVERYDAY!

Even the smallest person can change the course of the future.  J.R.R Tolkien

I'm going to tell you something.....

                                 But......you have to promise NOT to tell ZETA!

We have been home longer than EVER........closing in on SIX WEEKS to be exact!!!

I don't think we've even TALKED with a doctor since August 26th!!

And we don't have an appointment scheduled until NEXT WEEK!

!!!!We're talking like GOLD MEDAL status here!!!!

If we stay out of the hospital until the end of the month (when her next surgery is scheduled) then we'll be talking WORLD RECORD !!!

Do you believe in miracles??



    I DO....



Because I have three of them.........

God has most definitely shown his MIRACULOUS favor in Zeta's life!

Zeta continues to do well. She continues to improve since surgery to move a hypothalamic hamartoma from her brain in July. Last week, she went about 12 HOURS (in a day) without oxygen or the ventilator.....This is the LONGEST she has been without ANY type of breathing assistance since October 2010.....she kind of crashed after that so we figured we should slow down a bit.....so....for now she is just on MINIMAL oxygen during the day and on the ventilator at night.... I kind of think maybe she could go without the vent at night too, but I'm a little weary about trying that out.....so for now we just try hourly 'sprints' without oxygen during the day and keep her on the vent at night.....She is soooo interested in eating - she KNOWS when it's time to eat....I've been giving her tons of 'taste' tests during her tube feedings, but more recently she coughed some food out of her trach and it kind of scared me so I'm going to hold off until we see her pulmonologist Monday. I have to say it has been so WONDERFUL to watch all of the changes and progress made in the past couple of months since her surgery........if you ever doubted God's EXISTENCE or HIS ability to HEAL, I hope that ZETA'S story gives you some encouragement.......I KNOW it has changed the way I think about so many things.......

"
Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us."  Ephesians 3:23
 
Even the smallest person can change the course of the future. J.R.R Tolkien


My 3 children have forever changed the course of my future!!