Christmas Day Highlights

So what was in all those packages?

Well, there was lotion!

Joseph.  Yours is not lotion; it's soap.

One of the most exciting presents came from Mr. Jim (and Mrs. Pat)!

Didn't matter what was inside.  It was from Mr. Jim!

But the inside racetrack was great fun.

A toolbox.  Can you feel the joy?

Joseph had picked out some shoes for me to give him.  He was all sarcastic-y surprised to open the box. 

...and find that I'd wrapped something else in it.  Surprise.

Some books that were re-gifted from Joseph's youth

... still captivating. 

In fact, G sat happily and played with each gift he opened.  It makes me wonder about exchanging the "Christmas morning flood" next year for some kind of "Advent (Hanukah?) one-gift-each-night celebration."  Has anyone done that?  Thoughts?

After gifting, we were off.  My family was all out of state, but we got to celebrate with Joseph's relatives.  So fun!

And it involved G wearing a tie... You know he was thrilled to look so handsome.

And then the day was over.  A blur.  A fun blur.

Hope you had a fun blur too.

Gifting

Will I ever figure it out?

Back & forth; back & forth.

My boys already have more than they could ever need.

     I like to see them smile.

Do I want them smiling over "more stuff"?

     Christmas is a celebration of a gift.

I don't want them unfocused on the important gift.

     I have the ability to buy gifts for them.

Or I have the ability to give my gifts to others who might have nothing.

     This is the family God made me responsible for.

God warns me: "This treasure you have accumulated will stand as evidence against you on the day of judgment." (from James 5)

I tried for moderation.  A celebration of gifting and of my family, while still being responsible.

Fail.

After my anguish, Christmas morning arrives.

G wakes & comes to see me.  "Mama, you see dose presents?  Now, can I have da orange juice?"

Yes, the orange juice that I had been saving for Christmas morning.. that was the big hit.

Well, that and the Teddy Grahams.

Sheesh.

Merry Christmas

On this day of Christmas...

My true love gave to me...

a PERMANENT RESIDENT CARD for my baby!

(April 2007: Referral received;

January 2010: Arrived home;

December 2011: Party)

Home

I wake early.

With G asleep, I remember the coffee cake my friend sent to us.

Home-made deliciousness.

A little too much sugar to be a wise breakfast choice for G.

This is my perfect opportunity.

I head to the kitchen

and remember that Joseph is home.

"Guarded"

While behavior has been improving, the eye.... not so much.

A cataract has formed and is blocking G's vision in that eye.

Yesterday we met the cataract doctor.  Our retina doctor asked him to take G.  Multiple people have told me he's "the best."  He seemed kind & knowledgeble.  I liked him. 

I didn't like what he had to say.

We must be guarded about G's chances of recovering vision in that eye.  We are uncertain what kind of vision will result.  It has been a long time since G has been able to use that eye.  The brain begins to ignore vision from an unused eye.

Much will depend on the retina's health.  At this point, due to the cataract, we cannot see the retina.

The cataract is a clouding of the eye's lens.  It's like a cellophane bag, with protein inside.

G's cataract is not the usual situation.  His doctors suspect that there is a hole at the back of the "bag."  The problem is that when the surgeons enter from the front, then the lens material could fall to the back.. through to the retina.  Of course, G's retina does not need any more damage.

The lens material could be small & thin, and absorbed on its own.  Or it could get inside and cause an inflammation.

Once the lens is out it will need to be replaced with an artificial lens.  Lenses have different powers.  G's eyeball will need to be measured to determine the correct lens, which is not easy in a little boy.  9 times out of 10, the hospital will have the correct lens in stock.  Occasionally, they will have to order the lens and complete the surgery without it (requiring another surgery).

We need to set small goals.  Our first goal is to get that cataract out.  After that, we can reasses.

The cataract surgeon is booked through Christmas and is out of town the week after Christmas.  He had seen two other children yesterday, but will get G in for surgery before them.  We are probably looking at the first week of January.  I'll learn the date this Friday.

That is the total of all I know.

So many people are saying they are praying for G.  I hope they really are.

Delight

Our home has moved a little closer back to normal.

It is wonderful to watch this boy playing,

encouraging his trucks to "Push with all your MIGHTY!"

It is wonderful to laugh.

Good Books for a 5-year-old

With G's facedown requirement, we read hundreds of books.

Hundreds.

I can't tell you what our MOST favorite have been, because those have become Christmas presents for some special nieces (& one small Malachi).  But here are some others you might enjoy.

Read many times.  A favorite. 

This one has me saying "Terrific" all the time.

As the pencil draws, things come to life.

Has the shortest chapters ever.  Made Joseph & I both laugh out loud.

I could leave this one, but G loved it.  One of the babies is not as brave as the others and needs encouragement.

I don't understand the attractiveness of this one, but G wanted to read it again & again.

A fun book to read out loud.. but only if you can do a terrific Texan accent.

Sweet book. 

Boris' mom puts ice cubes in the bath to cool it down for him.

Velvet is different.  The other all-the-same kids come to appreciate her.

The boy designs an amazing car.  Fun rhymes made it enjoyable to read, which was good, because G loved it.

If you check any of these out, let me know what you think.

And if you have any great tips for a good read, please share.

The Eye: Where We Are

To recap where we've been recently:
1. G's retina was detached
2. Surgery
3. Calm & still.  No being around other children
(including the babysitter's children).
4. Still detached
5. More surgery
6. More calm & still; no other children.  Plus
mandated staring at the floor all day every day.
7. Six miracle days of cooperation
8. Six days of... misery

We had been trying G on a medication to help him achieve "calm & still."  That, along with your prayers, brought about a miraculous post-surgery window. 

Unfortunately, that window closed.  I wrote about the struggles that we have been having.

On Sunday we discontinued G's medicine (and you all prayed some more), and he's now had 3 terrific days!  Terrific in spite of us having to wake early for doctor appointments.  Terrific in spite of us returning to "scrambling for babysitters."

We're back to "scrambling for babysitters" because
(1) I returned to work.  I'd rather be home with G but, you know, a paycheck is nice too.
(2) Our regular babysitter quit.  I understand why.  G hasn't been able to go to her house and I haven't been able to pay her and, you know, a paycheck is nice.  But (sob) I thought we were almost back to "normal!"

This week we have 5 different sitters lined up.
Good news: This covers the whole week.
Bad news: G usually does much better when life is consistent.
Miraculous news: One of the sitters is a prospect to replace the sitter who just quit!

I will die of thankfulness if God provides a new sitter for us just that easily.

Oh - and you wanted an update on the eye -

The retina seems to be ... attached!

Attached, y'all!

We'll see if that continues.  The gas bubble dissipated more quickly than hoped for, which means it wasn't able to press & hold the retina in place as long as we wanted it to.

Also, it's hard for the doctor to see into the eye really well because G's eye has developed a cataract.  I guess that is serious because it's blocking vision in that eye.

Did you know that at age 5, a child's brain is still learning how to receive & process vision from the eye?  Vision is still developing.  Aren't our bodies amazing?

We can't have G's "visual development" blocked - I think because it would risk his brain discontinuing trying to connect with that eye.  Don't trust me; ask your doctor.  Anyway, he will need to have a cataract surgery soon.

Yes, I'm still typing.  Mercy.

SO - we have been cleared to stop the "facedown" (staring at the floor) part of recovery!  Halleluiah!

We do need to continue the "calm & still" part.  This is proving to be a challenge because
(1) He's so happy to be feeling better
(2) He's a 5-year-old boy

The child doesn't sit and play cars.  He bounces & flops and plays cars.

Oh, how I want that retina to heal.

Won't it be amazing if G's eye is saved?!

Thanks - again - for praying.

I Love This Notebook

When G came home, I took this spiral notebook.

It had once been Joseph's Chemistry notebook.. but it had suspiciously few notes in it. 

With those pages ripped out, it became G's Medical Record.  Each time G went to a doctor, I jotted a quick note with the date, doctor; what happened.  Easy.  Done.

The book has been a lifesaver.  I'm surprised at how often I'm asked questions about G's medical history.  I am not surprised at how much I forget. 

Thank goodness for the notebook.

Thanksgiving Break

SOMEONE was happy to see Joseph.

Ok - TWO someones were happy to see him.  I'm always glad when my boys are both at home.

Sacrifice & Love

I spoke (wrote) too soon.

That first six days of post-surgery peace were a miracle.

But no sooner had I written about it, than G's internal switch flipped to "fight."  He literally turned to me and said, "I gonna fight you," and we were back to dancing - trying to help him maintain his peace.

At one point, he was thrashing out with everything he had.  Normally, I would sit and hold him on my lap and help him ride it out.  Instead, I was trying to keep him facedown, for the sake of his eye. 

Picture me lying on my back, hugging him to my chest, while he's rampaging.  He has no comprehension that with every "fight" he is putting himself at greater & greater risk of losing his eye.  I, of course, have full comprehension, but I can.not.stop.him. 

I can try as hard as possible to communicate the risk to him.  I can stretch in every way to create an environment that sets him up for success.  As he succumbs to meltdown, I can hold him.  I can choose to hug him through every blow so that he recovers with the least damage possible.

I can try to do everything in my power to protect him.  But I cannot stop him from hurting himself.

I try not to post the ugly on our blog.  Everyone - all of us - have ugly that we choose & experience.  This ugly is not who G is.  It's just what he's having to get through now, as any of us have personal struggles to get through.

However, G is providing me with such a profound life lesson, that I feel I have to share it.  I want you to learn with me.

As I mother G through this time, I cannot escape thinking about Jesus.

When he lived on earth, Jesus considered a path that would cause him great pain, a path that may have appeared impossible.

He weighed it against his love for us.

He chose to step into it.

Without a single complaint.

He poured out a gift of love.

Living a patient life, teaching, providing example after example.

Sacrificing, even accepting death on a cross.

Because I didn't get it.  I don't get it.  Time & time again, I make wrong choices.  I do what I should not do.  I fight to do the very things that are condemning me.

And, in spite of all that, Jesus loves me fully & completely.  He sacrificed everything so that I could have life... a life I could not attain on my own.

As I would do anything for my son, as best I can, even as he fights against himself & against me... Jesus did everything for me.  Perfectly.  He saved me. 

He offers this free gift to everyone who is not at peace, to everyone who wants it.

I'm learning about sacrifice.  About love.

I'm grateful for that.

Surviving Eye Drops

Since I've already confessed that we're doing nonstop t.v. viewing....

Perhaps you recall the eye drop battles that we used to have?


No more.


Mr. Compliance is in the house.


What has brought about this change, you ask?


Sugar.

G gets one Mike & Ike for every successful eye drop.


Over a dozen candies each day.


Breakfast time, bedtime, all the time.


Sugar.


Whatever it takes, people.

He's Doing It!

So, about this "surgery recovery" thing.

You know, the "keep your maniac 5-year-old calm & staring at the floor" thing.

I would NEVER have believed that we could be doing it.

But - miraculously - it's happening.

I'm not a huge fan of t.v.  In the almost 2 years that G has been home, we've not watched a single t.v. show or movie at home.  For us, t.v. didn't seem like the best use of our time.

So, we've been to the library, and have looked down while reading 100s of books.  100s.

We have looked down while playing play-doh

...and while playing in a bin full of rice

 

... and while playing with baby shampoo goop

... and while creating fabulously disgusting concoctions

 

... and while watching as many movies as humanly possible.

Yes, movies have taken over our lives. 

We used Joseph's laptop while he was home. 

Now we're using Aunt Kirsti's DVD player. 

And we are using it all. day. long.

Hooray for movies.

Whatever it takes. 

We are looking down.

Please continue to pray for us.



Surgery Update

Surgery lasted more than 5 hours.

G's surgeon said G had a lot of scarring in the eye, which she "cleaned up."  She tightened the scleral buckle that was put in last month.  She re-attached his retina, and she put down more lasers (to help it stay down).

Now begins the hard part... "positioning."

It will be critical for G to remain facing the floor at all times for the next 10 days (he'll do the positioning for longer than 10 days, but that is his critical window).  I'm going to try him sleeping with me tonight so that the night-time positioning checks will be easier on me.  At least, that's the theory.  We'll see if I get any sleep with that kicking monster in my bed.

I'm off to try for sleep.  We just got home, and we need to leave for our check-up appointment at 6:30am.

Thanks for all the support!

Meals?

G's surgery has been scheduled for next week.  Hooray.

If anyone wanted to help us by bringing a meal some time in the next couple of weeks, my friend is going to coordinate a schedule.  If you might be interested, please email her at mealhelpers@gmail.com.  Thank you, Heidi

Career Preparation

What would cause a child to push a plastic handle onto his head?

"Mama!  I'm a ply-ot!"

When he's a pilot.  Of course.

Flux

Still waiting for a surgery date.

Still scrambling daily - hourly - for babysitters.

As G's life continues to be in flux, he continues to ... react.

His ... reaction ... caused me to miss more work yesterday.  I'm officially in the world of unpaid time off.

But how about a spot of sunshine from the weekend?

Yes, that's G.  Eating guacamole with a fork.  Proof that flux does include good times too.

Preparing

I've had a revelation!

G will be having the surgery but I AM THE PATIENT TOO.

With his previous surgeries, I determined that everything should be fine.  He would be recovering and I would be caring for him.

Not how it works.

He recovers (relaxes) when I am fully present with him.  If I try to take a phone call, he becomes agitated.  When I make a meal, he vies for attention.  I recognize that this is not how it should be, but it is our current reality.

When we get this next surgery scheduled, I will be seeking help.
  - Meals
  - Errands
  - Helpers (people who will care for me so I can care for G)

Because I am the patient.



In other news, I am STILL striving to get post-surgery medication to help G stay calm.  I feel like I've chased down 1,000 leads.  There's been no success... yet.

Benadryl Is Not Our Friend

I spent the weekend with a child who looked like G, but clearly WAS. NOT. G.

Not fun.

Hoping the doctors come up with a feasible sedation option.

The Eye: Where We've Been

I want to share more about what’s been going on with G’s retinal detachment. I’m going to aim for a 3-part series, starting with a look back.

Last month, G’s retina detached and he went through scleral buckle surgery. After that, a patient must stay calm and still so that the eye will heal.

I’ve shared some funny tidbits about trying to keep G still… but it hasn’t been funny.

The longer he’s been reined in, the more overloaded he’s become.

Do you remember the behaviors we used to experience… the ones that led to him being “invited” to leave his day care… those behaviors are back… and worse. He’s older, stronger, and wiser. Now he REALLY knows how to rage.

The thing is, it’s not a temper tantrum. It’s not a choice he’s making. He can’t be reasoned out of it.

He gets to a place where he can no longer employ logic. I watch him click into his own kind of “fight or flight” mode, and he’s off.

Not helpful when the mandate is “calm and still.”

Three weeks post-surgery, G’s retina is still detached.

G’s doctor explained our next steps. More surgery. Remove the gel from his eye (victrectomy) and insert a gas bubble (pneumatic retinopexy) under general anesthesia. The gas bubble stays in the eye and pushes the retina back into position so that it can heal (reattach to the back of the eye).

It can be a highly successful surgery…

     If the patient stays calm and still…

          For 16-21 hours per day…

               For 1-3 weeks…

                    WHILE “POSITIONED” FACING THE FLOOR

Because – you know – I was so successful at keeping him calm and still that someone thought we needed a bigger challenge.

I am not feeling at all good about our likelihood of success.

I’d say that I’m 99.5% sure we cannot possibly achieve this goal.

I explained this to G’s doctor, who simply said “I’m not willing to give up on his eye yet.”

Translation: “You try this surgery/recovery OR you accept blindness.”

Yesterday we met with G’s fabulous pediatrician to discuss options for sedation. Today we’ll begin a trial with different doses of Benadryl, hoping G is sedated & not stimulated by it. The pediatrician is going to research other possible options for us.

Finally. You are caught up on Where We’ve Been. I have the next parts of this series written out – but only in my head. Hopefully I’ll have a chance soon to type it out.

Thanks for caring!

Saturday: When G Became a Sausage

It is HARD to keep this boy still.

Let's list his favorite activities:
- Riding his bikes
- Running
- Jumping
- Climbing (Specifically, climbing over the back of the couch. Makes me crazy.)
- Playing with his cars while running, jumping, and climbing

And - which of those activities is he allowed to do now, while his retina is detached?

Exactly.

I took this photo to show you what we did on Saturday.

That is, a LOT of reading and a LOT of watching movies.

Also a LOT LOT LOT of me yelling "Slow down!  No running!  Calm & still, calm & still!"

We got to the end of the last movie.  G gave a long sigh and declared, "I'm a sausage."

"What, Honey?"

"I'm a sausage."

I think about 101 Dalmatians.  Threats of sausage?  I wonder: is he hungry?  I do not understand.

"I'm sorry, G.  I did not understand.  What did you say?"

"I so tired Mama.  I'm a sausage."

"I'm exhausted too, Baby.  Me too."

Last Thursday

(If you were counting on a quick skim, it's probably best to save this

one for a day when you can read.  It's long, but it's all significant.)

I wake in the morning at 4:30.

Shoot.  I'm late.

G's doctor appointment is at 8:00.  Rush hour.  Rain.  Got to hurry.

God whispers.  Calls me.

Yes.  I'm in the habit of spending time with him in the morning.  I respond.

Quick prayer.  I still have something from yesterday on my mind: Walk humbly with your God.  I've been so upset lately with babysitter struggles - how to find enough coverage so I can work; how to empower / encourage / ensure that G is kept still while I'm away.  I repent of my worries (again).  Help me to walk humbly with You.

And now...  He whispers again.

Yes.  I open my "31 Days of Praise" book.

"How I praise You that I need not strive toward a possible victory, but can live from a position of victory already won - that He who is in me (Father, Son, and Holy Spirit) is greater than he who is in the world... that although Satan is powerful, he cannot prevail against the blood of the Lamb and the Name of our Lord Jesus Christ.  Thank You that Satan must retreat before that Name and before Your Word, the living an powerful sword of the Spirit, and that in the end he will be cast down into everlasting defeat and shame."

Truth!  Fabulous!  I'm so glad I slowed down to read & praise.

I get up.  Whisper again.

Really?  I have to get ready.

Yes.

The traffic... rain... appointment...

Yes.

I open my bible.  Today's words are electric.

First in Philippians where a jailed Paul chooses to rejoice because "The Lord brought me here."  Paul encourages "Don't be intimidated by your enemies.  This will be a sign to them that they are going to be destroyed, but that you are going to be saved, even by God himself."

And in Isaiah, where the Lord says: "I will save your children."

I will remember this.  I understand that You wanted to tell me this.  I know You are equipping me.  I don't know why but I thank You.

I rush.

We get to the appointment exactly at 8:00.

The doctor examines G's eye.  She is serious today.  She says, "I am disappointed.  The retina is still detached."

This is after The Surgery.  The Surgery that had to work, and it hasn't worked.  We will give it one more week and see if it looks better next Thursday.  It must look better.  G has to stay still.  The threat of blindness looms.

G remains clueless.

I am heavy.

Still, my heart holds the promises.  In faith, I cling to Truth.

The Lord brought me here.

I will hold this living & powerful Word before me.

God will save my children.

I will live from a position of victory already won. 

And I will keep trying to figure out how to walk humbly with my God....

A replacement photo

Friends have expressed concern over the pitiful photos I last posted.  Fear not, full energy has returned!  We're having pretty serious problems with the eye, though.  I have stories to tell... as soon as I get a minute.  I'll try to write tomorrow.  Thanks for praying for this wild child.

Look out!

Personality is returning.

We saw the doctor yesterday.  She was surprised over how swollen G's eye is, but said there is no sign of infection. 

It's hard for her to get much of a look with Muhammad Ali swinging and doing his full-body-writhing technique.

For home eye drops, I've been pressing the babysitters into restraint service.  At night, my sweet neighbor has come over to hold his arms down.  She also helps the situation by gently encouraging him (and me). 

A funny eye drop moment...

G fights the drops with everything he's got.  As mentioned, he fully utilizes his body.  Once he's wrangled up, he tries for emotion:

"Mama, you sitting on me!  It hurts."

"Well, son, I'm trying not to hurt you.  When you sit still, then it won't hurt."

When emotion doesn't win, he tries the stall tactics:

"Mama.  Wait!  First, before, you count."

"Ok buddy.  What do you want me to count to?"

"...um... One."

Who knew that his lack of counting skills would come in so handy?

Update

Doctor said the eye looks as good as possible.  It's swollen up as big as a golf ball.  G refuses to open either eye.

Yesterday & today, he's done this

and this

this

and this

Sleeping.

No eating.

NO opening an eye.

He has one big activity... FIGHTING his eye drops.

I have two hands.
One is required for separating his eye lids.
The other is required for squeezing in the drops.

The other is required for containing his flailing feet & legs.
Two others are required for containing his flailing arms & hands.
Another is required for controlling his writhing torso.
And one is required for steadying his thrashing head.

You do the math.

It's not pretty.

Luckily, eye drops are only required four times per day.  Riiiiight.

That's been lots of fun.  Running a close second in the Fun Games is my search for a babysitter.  Because the regular sitter's children have lice.  Seriously.

So I'm home.  I'm out of vacation time.  I'm doing a mad eye drop battle every few hours.

But the eye is looking good.  And that is good news.

Post-Op

It's pretty late and we have to be out early to get back to the hospital.  Just a quick update, mostly to thank everyone for the prayers & support.

- Surgery was delayed by 2 hours... challenging, especially after G received his "loopy juice."

- As soon as I saw G's doctor, I started in with my list of questions (2 pages) (typed).  It felt good to get some answers.

- During the Q & A, when asking about the likelihood of blindness, the doctor said "I'm not giving up on his eye yet."

- The above statement caused Joseph & I great uneasiness all afternoon.

- Surgery took longer than expected.  Increase "great uneasiness" factor.

- After surgery, the doctor was all smiles and said it went "GREAT."  When asked about the previous quote, she said that she probably shouldn't have phrased it that way.  Balloon of anxiety bursts. 

- G is not out of the woods.  We just have to wait & watch & keep him still & be faithful with the patching & eye drops (which he fights against) & hope & pray....

- G's macula was still attached!  Doctor attributed that to the lasers that she was able to (miraculously) put in.  I attribute that to your prayers & God's wonderful kindness.  The attached macula improves his chances at good future vision.

- G now has a scleral buckle in his eye. 

- He is expected to feel like he got punched in the eye.  He was equally starving & exhausted when we got home.

I'm off to get some sleep too.

Thanks again,
Heidi

Surgery

"Mama, my brudah come to surgery with me?"

Joseph is joining us, which will be all around helpful.

The Eye and A Heap of Anxiety

People keep asking how we're really doing.

G is ok, as far as I know.  He's rebelling a bit over the restrictions on his movement, as we try to preserve his eye until surgery.

I'm thinking a lot about that verse from 1 Peter 5:

"Cast all your anxiety on Him because He cares for you."

I'm finding myself anxious often.  I am scared that G will end up blind. 

I worry that Ms. Leslie's dog will jolt G.  I worry that Ms. Leslie's daughter & G will sneak onto bikes and have a little crash.  Wait - those aren't worries - those have really happened.  I worry that the little crashes a normal boy has will cause this boy to lose his sight.

I worry that I should stay home with G.  I worry that I have such a tiny amount of "allowed vacation time" remaining from my work.  I worry that I should replace Ms. Leslie with another dog-less, child-less lady who will guard over G every second.  And I know that all the guards in the world could not keep this boy still.

I worry that he'll go blind and I'll forever regret that I didn't hire all the guards in the world.

I worry that the surgery is not until Monday and G may have fully detached his retina by Monday and it will be too late to save his sight.  I worry that I'm getting a sore throat, and G will catch it, and then he won't be able to have the surgery on Monday.  I worry that, if not from me, G will catch a cold from someone else.

I worry and I catch myself worrying and I pray.  Lather, rinse, repeat.

This morning as I prayed, God gave me this verse from Ephesians 3:

"Now glory be to God!  By his mighty power at work within us,

he is able to accomplish infinitely more

than we would ever dare to ask or hope!"

I'll try to stick with that today.

5-year-old Happiness

The past few days weeks months have been so busy that I've missed blogging about lots of important things.

For example, what do you think caused a smile like this?

Did you guess ...

A BIRTHDAY BICYCLE?!?!

Or EVEN BETTER... A SPIDER MAN BIRTHDAY BICYCLE?!?!?!?!?!?!?!!!!!!!!!!!!

Seriously does not get any better than that!