Jun 27, 2011

State of the Family Address

Last year on June 26 it was Manny's first birthday.  We documented it well with family pics and lots of things.  This year, we decided to do it again.

So here is the report of the State of the Family.

Jacob ... will be 13 on July 7 (only 11 days after Manny's birthday).  He is 5'9", weighs 138 pounds, wears a size 12 men's shoe.  He'll be headed to the 7th grade in the Fall.  Will likely homeschool him again.  He is still dealing with FSGS (kidney disease, in the Nephrotic Syndrome family).

Kaley is 11 1/2.  She is 4'7", weighs 58 pounds and wears a size 7 1/2 women's shoe.  She is only 16 months younger than Jacob but they are night and day in build!  She will be in 6th grade, but most people guess her as age 8.

Sam will be 10 at the end of August.  He is 4'11" and weighs 90 pounds.  He will be in the 4th grade.  He is one of the most helpful kids you'll ever meet.  People argue regularly with me about him being homegrown and not adopted because he looks just like me.

Luke is 8.  He is 4'5" and weighs 70 pounds.  He is headed to the 3rd grade.  He has a mind for physics and such.  Today, he has spent most of the day trying to figure out the angles of how to make dominos fall in patterns and how to make them jump things and climb up hill, etc.  I've discovered lately that his favorite food (when he's craving especially) is raw cauliflower and balsamic vinegar!

Zoe is 6.  She is 46 inches and 46 pounds.  (Thought that was cool.)  She will be in the first grade.  She is very excited to see her new book launch.  It's been interesting watching her see the process come together, how much work it is.  She is now writing her own books.

Manny is 2.  He is 25 pounds.  And he is about 32 1/2 inches.  It's virtually impossible to measure him accurately since he doesn't stand up and his feet are still a bit "off" so no way to know what part of his feet to use.  He is wearing size 18 month clothes.

His party was small and simple, just family.  We had a cake (thanks Elsa!) and a few decorations (Diego).  We released balloons.  We took pictures.  We watched Bambi.  Pretty much our day.

If you'd like to see more of the pictures from his party, you can click this link.  https://www.facebook.com/media/set/?set=a.10150225480206958.321988.697891957&l=7d639fbfbd 

 As I think of this past year, I am in awe of the miracles.  I've got tons more wrinkles and a few more pounds, a lot more wisdom and a heck of a lot more compassion.  I've got muscles where I never did before and I ache where I didn't know one could ache.

You know those vows you take when you get married?  I think we should take some similar ones when we have children.  Because they are pretty similar.  I have agreed to take these children while I'm richer and poorer.  (Still waiting for the richer part, I've practiced the poorer part for a long time now.)  During sickness and in health (theirs and mine, and trust me, we've had it all).  For better and for worse.  (Check).  Until death parts us.

And that's the part that's new.  Last year, we were hoping that we'd not face that yet.  We put it before God Almighty.  And that death cloud no longer lives over our house.

And THAT is the biggest thing that's changed this year compared to last year.

So there's the state of the family for 2011.  We're thankful for life.

Jun 24, 2011

Party Invitation

Who is up for a party?  Manny is turning TWO.  Can you believe it?  Sunday! 

You are cordially invited to a cyber birthday party!~ 

Remember just a year ago, we cautiously and carefully celebrated his first birthday, a milestone the docs said wouldn't happen.  He loved balloons (something light enough he could hold).  And the celebration took on a life of it's own.  People around the country wanted to help celebrate his birthday. 

We're going to do a repeat.  So if you're game, here's the instructions: 

Get a balloon. 
Write a message on it ... a prayer, scripture, blessing, whatever.
Take a picture of the event. 
Send the picture to me so we can put it in our scrapbook for him.  And I'd also LOVE to have what you wrote on the balloons as well. 

Last year I know there were many prayers of, "Please, Lord". 

And.  He.  Heard. 

This year, I know our balloons are going to say a lot of THANK YOU. 

I cannot begin to tell you how much this year has meant to us.  From his birthday last year to this year ... it seems like just yesterday in some ways.  It's been a hard, hard year.  I know I've aged 10 years this year, I've gained 15 pounds (until this year, I have weighed the same since college!)  But it's also been one of the best years of my life as well.  I've never felt more blessed, more connected with my purpose and calling in life. 

So ... please join us this weekend in the Celebration of Life! 

Jun 19, 2011

Zoe's Book ... Help Wanted

Warning: Shameless asking for help ahead
A few weeks ago, Zoe was having some issues at school, mostly stemming from self-image things due to bullying.  She asked if I would write her a book explaining why she looked like she did.

So I did what all good moms would do, I started putting together a book for her.  My idea was just to have it for HER.  As I shared the idea, several other moms with cleft affected kids said they would be interested in a book like that.

I should produce it? Hmmm.  And at that moment, this project took on a life of it's own.

This book contains actual photographs of Zoe.  We have some very good "before" and "after" pictures starting when she was a newborn.  I think it a very graphic/realistic way to show what a cleft child truly looks like better than any artist could do.  It is a very simple, straight forward way of explaining the medical and emotional components many cleft affected children face.  It emphasizes, "I'm a 'regular' kid."  It's written from Zoe's perspective, using words I've heard her say. 

We are now at the end stages of editing the book.  Next step is final layout and then printing.  I'm hoping to have this ready for sale in about 2 weeks or so.

As a result of asking around a bit for some ideas, I've been contacted by someone from PBS that wants to run this story as part of a series they have.  In the Fall, we're scheduled to be interviewed and they will promote the book.

Meanwhile, I've been connected with a cleft group and the director is interested in putting it on their website.

I've had several people say we should promote it on sites like SmileTrain, etc.  (There really are very few children's cleft books I've discovered from my research.)

So here's the part where the asking for help comes in:

1)  People to promote the book.  (Not yet, but when the book is ready.) So in the meantime, please be thinking of ways to promote this.  (I'm NOT a marketer!)  Think word of mouth.  Think organizations who help cleft affected kids.  Think Cleft teams.  Think Cleft families.  Think Cleft doctors.  etc. etc.

2) Fulfillment.  We have no clue how many books will be sold.  100?  500?  More?  I will need someone to take the orders, put a label on an envelope, put a "thank you" letter in it and ship the book.  Someone very organized or someone with prior experience in this would be very helpful.  There should even be a (small) stipend built into the price of the book for someone to help with this.

3)  Accounting.  There are many pieces that need to be tracked.  For example, there's the cost of the printing, cost of shipping, stipend for the fulfillment person, a percentage of the profits to go to the Zoe House (which we are currently fundraising for ... this is a house for kids with craniofacial disorders.), etc.  I also have the idea to have a "buy a book" option where people can buy an extra book (at cost) to be able to give to a child who could use it but can't afford it.  My brain hurts just at thinking of the money coming and going.  Spreadsheets give me the hives.  If this is a small operation, then it's not as big of a deal but if we had a few books sold, this would get beyond me very quickly.

4)  Feedback.  We plan to do a very short run (meaning not a lot of books) for the first printing.  There are always "bugs" that have to be worked out.  During that first run, I'll be very open to any feedback.  If there's a type-o we missed, inaccuracies, wordings that are hard to understand, etc etc.  we would want to know.

If you would like to help in any of these ways (or ways I haven't even thought of), please drop me a line or call me.  The best way to reach me is goredan@hotmail.com  or 813/967.0880.

Thanks in advance for your help, support and prayers as we venture to this new world.

Zoe and Manny update

We did, indeed, get to go home on Friday after the surgery.  Only one night in the hospital is amazing.  Zoe had no troubles with bleeding or breathing so we were outta there!  Her 02 level never went below 98 all night.  (But incidentally we discovered her heart rate goes VERY low while she sleeps... probably a good thing.)

We arrived at home (about 45 minute drive from the hospital).  As soon as I walked in, I checked out Manny's rash Dan was trying to describe. It was all over his back and spreading.  But I also noticed cellulitis around his Gtube site.  (That can land him in the hospital QUICKLY.)

The cure? Antibiotic.  But if we give him antibiotic, it will trigger the c-diff (courtesy of the hospital).  And that will land him in the hospital.

I was home only about 10 minutes when I called his doctor.  She said to bring him right in.  So I got Zoe settled in a comfy couch with covers and a movie, gave her pain meds and antibiotic and headed out.

The whole time I kept thinking, "Please don't send me right back to the hospital!"

My pediatrician is amazing.  We have a great relationship where we both trust each other's judgment and she leans towards the side of being conservative.  She thought the rash was viral.  She didn't think he needed bloodwork since his fever was coming down.  The cellulitis was concerning to her as she remembered how bad it got last time.  (He was fighting for his life!  The Docs gave him a 50/50 chance of pulling through!)  If you want to see those pictures, HERE is a link for that blog post.

When we were in the hospital this last time, we consulted the Infectious Diseases doc and he said that we'd be walking this tight rope for the next few years.  To treat or not to treat with antibiotic.  It's not an easy decision either way.

So my doc called the GI (who wasn't our GI the last time he had this).  He and the Pediatrician came up with a plan.  We would treat with only a topical antibiotic right around the site.  If it improves, we can stay home.  If it worsens in any way, I immediately get to the hospital.  (Yes, I kept my bag packed from Zoe's trip.)

Saturday morning it looked slightly worse so I prayed harder, cleaned more vigorously and applied more liberally.  By Saturday afternoon, it was improving.  As I type this, it's Sunday morning and I took a quick peek while he is still sleeping.  And it's hanging in there.  I have hope that we can stay out of the hospital and not have to take the antibiotic.

Now in the meantime, he has been having these HORRIBLE episodes.  He wakes for 2 plus hours and screams bloody murder.  He is screaming, "Help me" and "Owie" and "No way".  His eyes are open but he's not there.  Nothing helps.  Nothing works.  And then it just stops.

We've been wracking our brains about what this is.  Is he in pain?  Why is he so different in the day than at night? etc.  Last night at our church service, someone suggested Night Terrors.  I don't know if this is right or not but from the little I've read about them, it just might be.  I'm wondering what can be done about it.  This is EXHAUSTING.  It's hard on him too as his heart rate goes over 200.  It's horribly helpless to see this.

I've had kids with horrible nightmares before (especially terribly abused kids in foster care) but nothing remotely close to this.  I should get a video of it sometime just so people can see the raw intensity of this. Well, actually ... I'm hoping it doesn't happen again!

Jun 16, 2011

It Never Gets Easier

Zoe had the definitive test that showed she needed a surgery called the Pharyngeal flap or "p-flap". I cannot begin to describe this procedure accurately to convey how horrible this must feel.  But basically they take the back of your throat, cut 3 sides to it and then sew it to the palate (roof of your mouth).  Doesn't that sound pleasant??  Here's one artist's rendition of this procedure:

Just from the picture alone you can get the idea that this procedure can cause obstructive sleep apnea.  When tissue is cut it can swell so that's a problem for the first few days.  But this flap is now permanent so that is obstructing her airway.  So they keep you overnight in the hospital to monitor the bleeding and the airway. 

Zoe picked this dog to take with her. Ironically, it was the dog I sent to her in China that arrived while she was in the hospital for her Palate surgery.  She didn't know that until today!

So now about Zoe.  She was so excited this morning.  She was ready to GO!  I was very clear with her about what would happen, what it would feel like, etc.  Her only complaint was that she was hungry.  She had dinner about 5pm yesterday, a popsicle about 8pm and some gatorade at 8am.  That's it.  So by 1pm when the surgery started, she was hungry and thirsty. 

She was taken back about 12:45.

I sat in the waiting room all by myself.  I was struck by the notion of how this never gets easier.  I have been in the waiting room SOOO many times that I've lost count.  I have to remind myself to breathe in, breathe out.  Until the moment I hear the words, "Your child is in recovery." 

Eventually, Dr. Ricalde came in and said, "It was textbook."  There were no troubles, no complications, very little bleeding.  Always a higher risk of breathing troubles for Zoe due to the Goldenhar Syndrome ... it makes for a "difficult airway." But there were no troubles for that either. 

Dr. Ricalde did indeed take out 2 teeth.  She said one wasn't near the palate enough to affect it.  The other did leave a pretty big fistula (hole) but since we're going to do expansion of her palate soon, this shouldn't be a problem.  Whew! Big sigh of relief!  Now Zoe won't have that tooth pain any more. 

By the time I got back to the recovery room, she was in a lot of pain!  She was crying uncontrollably and they got me earlier than they normally would have so that I could calm her down.  Part of it was the anesthesia.  (She comes out of it hard.)  And some was due to pain.  They got morphine on board as soon as they could but it just took a while to kick in. 

I calmed her down by reminding her what we had talked about and letting her know the crying would make it hurt more.  She was trying soooo hard.  I told her how brave she is ... that she is the bravest person I know (and I truly mean that) and tears flooded my eyes as I said that.  I told her she was my warrior princess.  My mind filled with all the times she's been hurt in her life.  And the pain to my heart was overwhelming.

I put the prayer request out on Facebook and it only took a few minutes before she started to have a bit of relief.  It was like a lightswitch. 

See the 2 bears?  The surgical nurse said, "Want one or both?" She chose one. He then asked again, "Want one or BOTH?" She said, "One".  He insisted and shoved the other bear at her, "You want BOTH!"  He expected her to be typical, not so self-less.  Hearts melted as they saw that.

She was drifting in and out of sleep and as she would drift out, I allowed myself to think back on the last 4 years with her, but also of her first 2 years without us.  My little girl has been through a LOT.  And I shudder to think forward at the pain that is still in front of her.  Some of the barbaric surgeries are unthinkable! And I wondered if *I* am up to the task.  But of course, I HAVE to be ... I am her Mother. 

She had several moments of nausea.  That would be BAD to throw up with her throat like that!  She swallowed quite a lot of blood which can cause nausea.  Morphine can cause it.  Anesthesia can cause it.  So they gave her anti-nausea meds. 

We ended up staying in recovery for a very long time because there wasn't a bed ready in ICU.  But finally we got up to the floor.  As I type this, it's almost 7 hours posts surgery and there are no complications.  She's breathing great, doing well.  We're staying ahead of the pain we hope.  Praying for a great night sleep.  If all goes well tonight, we can go home tomorrow. 

Thanks for all the prayers for my Warrior Princess. 

And while you're at it, don't forget to pray for Dan at home with the other 5, including Manny who is sick.  It's my first night away from him ... and he has a fever. 

Jun 13, 2011

Zoe's meeting with surgeon

It's been a while since I updated you on Manny or Zoe.  I was holding off until I had news and news just never came ... until today.

Manny: we went to the geneticist expecting to get the results of the muscle biopsy.  We know the initial diagnosis was made back in April but that wasn't the full report.  Uh ... the geneticist didn't even have the initial report yet!  So I told HER what his diagnosis was! (They even commented, "We should pay YOU for this visit!") So there is no news still with Manny.

He is going to be 2 in less than 2 weeks ... stay tuned for ways you can be involved in his birthday celebration.  We intend to do the balloon release again!

Zoe:  She finished the school year off just fine.  No troubles.  Amazing new teacher.  And the principal is pretty sure she has a good fit for Zoe next year.  Luke will get Sam's teacher from this year.  Sam will get Kaley's teacher from last year.

Last Monday, Zoe had the VPI study done to see if her Pharynx is making contact with her palate like it's supposed to.  It was very clear even last week that it wasn't.  I just didn't have the full report or the "therefore" until today.  So we went to the surgeon.

But while we were there, we were led into a waiting room.  I think she has about 10 patient rooms.  I *happened* to be in the one with a "thank you" gift I'd given to Dr. Ricalde.  2 years ago I went to China and delivered medical supplies, school supplies and shoes/socks to kids in Northern China.  Dr. R was a sponsor.  As a gift, I gave her a picture frame with kids in it that we'd donated to.  I made sure to give her all pictures of kids with clefts.  The pictures were random though.

As I walked into that room and saw the photos displayed proudly, one picture caught my attention.  "Claire" ... a little girl who has JUST been matched with a family.  I'd prayed for this little girl for so long since I'd met her.  I was thrilled to be able to tell the Doc that this little girl was coming home!

While in the room, Zoe had to use the restroom.  We opened the door and it just happened to be across from the receptionist exit area.  Tara and her son Clayton were there checking out!  Too funny.  1 minute later or earlier and we would have missed each other.  Zoe and Clayton have never met.  Both adopted from China, both with clefts, both 6.  We'll get together soon I'm sure.

But the other part is that I'd written the cleft book for Zoe ... I had asked Tara for a picture of Clayton to put in the book and she graciously agreed.  So I had the book with me.  She got to see the mock up version.  I'd brought the book so Dr. R could look at it and give me her feedback on it.

I left the book with her and she seemed excited to read it!  I'm thankful for Dr. R's feedback/endorsement on it as I'm hoping to sell the book to organizations that help cleft affected kids.

And as far as that goes, the book is written.  The artwork is basically done.  There are very few steps until it will be printed and ready to go.  I'll need help with ideas, fulfillment, website updates, marketing, etc.  So heads up now that I'll be seeing who can do what to help with that project.

OK ... so eventually we got to the actual reason we were there.  Bottom line ... Dr. R. said we had basically no choice but to do the surgery.  Anatomically, she will never achieve "normal" sounding speech without it.  WITH it, she likely will.  We also looked at the panoramic view of her teeth to determine how soon the bone graft needed to be done.  Dr. R's first choice is to wait about 6 months ... in the meantime, do some expansion on her palate (in the front mostly) and do that surgery then.

When she looked at her mouth, she noticed the abscess on her tooth ... and I told her Zoe actually has two and that she'd been on antibiotics for 2 weeks.  Dr. R. said then she needed to do the surgery ASAP.  Maybe as soon as Thursday if the Dentist can work it into his schedule then.  (We'll know tomorrow.)

So in summary ... I am not happy.  We'd prayed and hoped she wouldn't need this pharyngeal flap surgery.  But she does.  (sigh) And I always face ALL surgeries with this same thing of, "Should we or shouldn't we".  I trust this surgeon.  I trust her opinion.  I trust her skills.  I just don't want my little girl to suffer.

Zoe?  She asked on the way home, "Can we do the surgery TOMORROW???"  She knows it will hurt. She knows it means 3 weeks of soft foods.  She knows she might not instantly sound like the other kids. But she also means there's a chance for her to sound better.  She knows her teeth will stop hurting for a while.  She's ready to go!

Thanks Handiman Hon!

Some people are "naturals" at doing fixer-up jobs.  My husband is not one of them.  He CAN do it, he just doesn't like to or something.  (I guess I should ask him.)  The problem is that we live in a 50 year old house that was lived in by a person who was blind and aging so they didn't do any maintenance or upkeep so it's BAD.  There are a lot of things that need to be fixer-uped.  (Yes, I know that's not a word.)

That is why it makes it all the more impressive when my husband DOES do a much needed job around here.  I'm that much more thankful!

You all know about my Mother's day toilet.  (His first to install.)

Well, this week, I got a new dishwasher installed.  Poor guy.  It took him from 2pm until 5am (only stopped for dinner basically).  But he got it done!  I'm so proud, so thankful.  Our old one was toast.


I also got a new faucet in my kitchen sink.  I'd bought it about 2 years ago when we went from tile to granite for our kitchen cabinets (Mom and I did that project).  This week was the week to get this installed too!  He said he was inspired to do it since I'd emptied all the stuff under the sink for the dishwasher.

So thanks Hon!

Jun 3, 2011

Motherhood: Letting Go

Motherhood is a series of "letting go".

Mothers are born with every egg they will ever produce.  Once a month we let one go.  One day, one goes on to become embryo, fetus, baby.

She will grow that baby inside for nearly a year.  And then she has no say in when the baby moves out.  But in many hours of labor, she struggles to let go.

I've heard many mothers say how their worry is multiplied once the baby is born.  How can she possibly take care this baby 24 hours a day now like she did in the womb?  And that's the next step of letting go.  I think Elizabeth Stone's quote says it best,
"Making the decision to have a child is momentous.  It is to decide forever to have your heart go walking around outside your body."  

And I, of all people, of course know that "Motherhood" isn't defined by the notion that we had to birth the child.  Adoptive mothers join in with the letting go before we meet our child too.  We let go of many things too such as the notion that we can be with him/her when we choose.  Like we had Zoe identified for 7 months and loved her across the ocean while she was in a home in China.  We missed birthdays.  She had surgeries and we weren't there.  She got a horrible case of chicken pox.  She wasn't tucked in safely in my womb.  She was experiencing life ... without a mother.  And I couldn't get to her.

With Luke, even though I had him since he was 2 days old, he was not legally "ours" until he was 2 1/2.  There was a birthfamily involved.  And the social workers determined when he would go on visits, when he would go to the doctor, etc.  Over and over he was taken from my arms and I had to let him go.

The letting go continues.  The first time a mother puts the child down out of her arms and has to walk away.  It might be only as far as the shower (a rarity, of course).  Or the first time the child sleeps in the crib.  There's letting go for the first night sleep in another room.

I've talked to many new mothers who say, "I miss them when they're asleep."  (After they get a certain age, trust me, you are counting down the minutes to bedtime but until then, it's the same with most mothers!  And your 6th child?  You feel the same way about that child as you did your first.)

Then there's the letting go to take their first steps.

Letting the child hold their own spoon.  Letting them put on their shirt (even if it's backwards) because they said, "I can do this myself".

Letting them go play with a neighbor.

Letting go on their first day of preschool.

Summer camp, College, Down the Aisle.

For those of us with kids with special needs, we often have to let go of the child over to the doctor.  They poke. They prod.  THEY have the say in what happens medically to that child and we stand by and let it happen.

And if there are surgeries, we have to let them go down the hall on a gurney.  For me, that's one of the most difficult "letting go" times that I experience.  

The letting go never ends.

Piece by piece, ready or not, they move on for the next stages of life.  If we have equipped them right, they will be.  They might mess up.  But we have also taught them how to get up, brush themselves off and start over again.  But a main goal of motherhood is to have a child that can be equipped.

Some of these are easier to do than others.

There are days we want to just make them babies again.  

And our job? ... to Celebrate each stage.  To Cheer. To pray.  To love.  Forever.

And yet ... we also are to hold on.  
(I see the need for another blog entry on this part in my near future.)

Knowing the difference  .... ahhh,  That's why the most difficult job in the world is to be a Mother.