Sunday, December 21, 2014

A little Christmas wish....

I get up early in the mornings to have some quiet time before the day starts.  I drink my coffee.  I spend time in His Word and praying over the day to come and the things on my heart; friends and family, struggles and joys, a world that needs Him so desperately, the fatherless. 

This morning, I have my cup of coffee and just the lights on the Christmas tree on.  It is quiet.  Well, relatively speaking.  I can hear the hum of the humidifier that Serenity is hooked up to at night to help keep her lungs moist with the trach.  I hear the baby swing rocking back and forth as I try to keep Little Man asleep.  I hear Hope "s'moping", as the kids call it, back in her bed.  It has been part of most nights here since she came home.  She huffs and puffs (I don't know how else to describe it) in her bed when she wakes up.  It isn't a cry.  That we respond to.  It is just an "institutional" noise.  We used to try to get up and stop her, but the girls have said that the noise doesn't wake them up anymore, but us coming in does.  So, we let her s'mope.  So it is quiet compared to the days...but always life humming around me.

I look at the Christmas stocking hung up.


Sixteen lives represented.  I think of the few short years - which seemed an eternity at the time - that it was only two - Handsome and I.  How lonely it seemed.  Now, I rejoice over each precious child that God has given us.  I think of each of their stories ~ each so unique, yet also so intertwined with one another.

Sixteen....but I have a little wish.  I wish there were two more hanging this year.  Two more for my two tiny daughters overseas that are waiting for us.


Brooke


Jillian

Yes, the Lord has called us to redeem two more precious little lives.  We have the first home study visit on Monday.  We will be turning in paperwork to their large Asian country hopefully by Tuesday.  In two to three weeks, we should receive "PA" - which is preapproval from their country to move forward with their adoption.
 
Little Brooke is three years old and has been blessed with an extra chromosome.  I have wanted for so long to adopt a child with Down Syndrome, but God always had another precious little life for us instead.  I have always rejoiced over His choices - but have secretly hoped that meant that we would adopt at least one more.  Brooke is at an amazing home, run by an American family.  You will have to read their story here.  It is pretty incredible.  I am so thankful that this is where one of my daughters is - she is loved and well cared for as she waits.  I am jealous that Handsome will have the chance to meet them when he and The Helper go on the pickup trip.  I am going to find out from our agency if it would be acceptable to get in touch with them after we have received "PA".

Precious, tiny Jillian has Apert Syndrome, just like Serenity.  (Did I hear you squeal, Jessica Cooper?) She just turned a year old at the end of October.  She is about the size of our 7 month old Little Man - who is not so "little" - so at least for now, it appears she is well taken care of.  She is in a government run institution in the same general area as Brooke.  The biggest difference (that we can tell) right now between she and Serenity is that Jillian's thumbs are also fused, giving her "rosebud" hands.  This will give her very little ability to use her hands, unlike Serenity.  I cannot wait to get her home and have Serenity's amazing team begin freeing her to thrive.

This was a long battle to come to the point of truly trusting we were hearing God's voice calling us.  It seemed so crazy....but that story will have to wait for now.  I will just praise Him for their beautiful lives.  I will praise Him that each life matters.  Even two tiny little girls tucked away in an enormous country, both abandoned at the gates of institutions.

We are trusting God to provide all that we will need - the strength, the courage, the ability, and the finances.  We have a tax-deductible account with The Shepherd's Crook - another amazing ministry and family.  If God should lead you to give, you can click here.

More than anything, we need your prayers.  Please pray for the meeting on Monday with the social worker. We have truly loved each social worker that God has brought into our home.  Pray for the medical reports to be done on Monday so we can move forward with that step.  Pray for the "PA" to come back quickly.  Pray for peace and patience as we wait.  Pray for each day as we strive to fill our children's hearts and minds.  Most of all, pray that God is always glorified.

Another adventure begun...


Saturday, December 20, 2014

It is enough....

For several weeks (well, maybe months), I have been mentally eying the date of December 13th.  It was almost like a countdown in my head.  It was coming....what did I have to show for it?  December 13th was the one year anniversary of Serenity and Hope coming home.  I simply cannot believe that a year is gone.  No, I even need to rephrase that - a year has gone by.  You see, as December 13th crept closer and closer, I began losing perspective of what God has done in this past year - it is not gone, it has been used completely and fully by God for His purposes.

He brought home these two little ones:

He brought this Little Man safely into our home:

He carried precious Grace through her hip surgery at the end of June

He provided what Serenity needed to thrive through the hands of doctors; air through a trach and the removal of pressure on her brain by a skull expansion....

And He brought her safely home again.

To thrive...

 
All the while He was doing this, He was providing for, nurturing, protecting, stretching, growing, blessing us.  A million hallelujahs would never be enough.  I simply cannot praise His Name enough for all He has done!  He has redeemed me!  To Him be all glory, honor, and praise.













And yet, I had lost sight of all of that.

I guess I didn't realize how much I was counting on posting the incredible changes in one little life a year after she was rescued from an earthly hell.

I wanted to be able to "show" the world amazing transformation pictures.  I wanted her to be walking and maybe beginning to talk or sign.  Some families have truly incredible transformation stories.  I love seeing and reading about them.  I love praising Christ for what He has done!

And yet, my precious Hope....






We struggle to get a good picture of her.  In most of the pictures above, she has the same scared look as in her profile picture.  She is still on "hyper alert" all the time - every noise, every movement, every bit of life has her vigilant for her own safety. Anything new is a threat.  Any change throws her back into chaos.  Where is our amazing story?

It is there...it is just in the tiny details.  The details that would not seem important or huge to anyone else.  She is not screaming every night anymore.  She does not lay on the floor like a limp rag.  She is drinking independently from a cup now.  She scootches on her bottom to get places close by.  She can tolerate short trips to the store or church without too much fallout when we get home.  She does smile at her family and get excited when they play with her.  

It doesn't sound like much to you, does it?  I understand.  

This was my struggle.  I want so much for her!  There is so much possibility - so much ability unused.  There is so much awaiting for her!  And yet, she is still trapped in her own little world.

I am pouring back through all my adoption materials and research.  I am seeking out help from those that have "been there, done that" before me.  Last night, God arranged for me to talk with the most amazing adoptive mom - one who has been in these trenches for a few years before us.  She had so much to say that I needed to hear - so much direction and perspective.  It was like God was pouring out healing balm on my soul! One of the many things that I pondered after we talked was that we are in a very small category when we adopt; an even smaller one when we adopt special needs as a large family; an even smaller one when we adopt special needs as a large family from a truly horrific institutional setting...and when we say that we have adopted special needs, as a large family, from a truly horrific institutional setting and her name is Hope - we are in a category by ourselves.  There are no "experts" on Hope.  There are people who can give direction and insight - but no one who knows what is a perfect solution for Hope.  No one, except her Creator.  And He gave her to us.  He put her in our family by His beautiful, perfect plan.  He knew what she needed, and it was us.

So what does that mean to me?  It means that where she is right now is enough.  It is enough that she is safe and loved.  She will never be hurt again.  She will never be ignored and neglected again.  She will never again feel her tummy hungry, she will never again feel her body dirty.  She will never again be stuck in a crib all day with nothing.  She will never again be touched by hands that do not love her.  She will never again be ignored.  She will never again cry without her mama's heart breaking for her.  She will never again be alone but for her Father in heaven.  She will never again be an orphan.

This is enough.  It is more than enough.  This is the beauty of adoption: that a child born of someone else, even in a different country, is placed in a family and is loved with a fierceness that only God in heaven can understand.  That regardless of what she is or is not able to do - regardless of the damage done to her - regardless of whether that damage will ever be repaired - she is a beloved daughter who carries her father's name.

This is enough.

This does not mean that I will not keep seeking direction and guidance for her well-being.  It does not mean that I will stop crying out to my Savior for her.  It does not mean that we will not continue to seek to help her grow and thrive.  I am not giving up because she is my daughter!  But it does mean that I will strive to never lose sight of the fact that she is safe.  She is beloved.  She is mine.

It is enough.  Praise to God that it is enough.



To Him be all glory, honor, and praise.

Tuesday, November 25, 2014

The most amazing man....

Happy 20th Anniversary to the most amazing man in the world. Today I celebrate being married longer than not being married - quite a milestone. I love you now so much more than twenty years ago – and I was crazy in-love then. I have seen you grow and strengthen as you seek His face and carry our family. I have seen you soften and love so deeply it hurts as you take a new little life in your arms - or a life that has been discarded and abused by others. You have stuck by me in my hardest times – through my endless tears seventeen years ago over the empty nursery that we thought would never be filled and now through the craziness of a house full of blessed chaos, noise, laughter, needs, and treasures without measure. How I love you, my best friend. We would have never guessed where He would take us, we were so young - yet even with all He has blessed us with, you are still my greatest gift here on earth. May our Lord richly bless you for your sacrifices and love for us.


Monday, November 24, 2014

Christmas cookies, anyone?

SOLD - THANK YOU!
I made two sets of felt Christmas cookies and mugs that I am selling to raise money for little Rudy on Reese's Rainbow.  One set has two red mugs and one set has two green mugs.  Each set is available for a $25 tax-deductible donation to his account at http://reecesrainbow.org/70513/rudy .  Please leave me a comment if you are interested - the comment will not be published.



*The pattern was used according to the creators copyright description.  Also, the marshmallows are pretty small - I can sew them to each other in a pile if you are worried about a choking hazard.

Thank you!

Please continue to pray for a family to find little Rudy - what a treasure!

Saturday, November 22, 2014

Praising God!

We are home!!!!  We are home!!!

PRAISING THE LORD FOR HIS GOODNESS!

A post coming soon...but today, I am just going to hold my kiddos and rejoice.


This was Serenity's nap time - The Helper just needed to be nice and close.  I understand the feeling. :)

Tuesday, November 18, 2014

We are still here....I promise!

It has been 3 crazy-busy weeks since Serenity's first surgery.....three long weeks.  Honestly, it has gone much, much smoother than I anticipated.  That is the benefit of planning for the worst scenarios - you end up most of the time with a pleasant surprise.  Actually, it is a little hard to use the word "pleasant" when talking hospitals, etc., but you get the idea.

Our anticipated going-home day is the 21st; so just a few more days. But this morning as I am tired and 1-hand typing as Little Man is already up, 3 more days feels like a long time!  Here is a picture of my precious girl from last week:
This was before the skull surgery ("vault expansion") on Friday.  For the surgery, they shaved a once inch strip from ear to ear over the top of her head, but they left the rest of her hair.  I cannot tell you how much relief emotionally this is - something about having her shaved completely would have really crushed my heart.  Now with some creative hair-dos or some big (soft) headbands, we should be able to hide the chevron shaped scar.  When they do future surgeries, they will just keep coming back to that original place.  Again, hard to describe the emotional relief in that.

I would guess that most people would not be able to see differences in the skull/face, but they are amazing to us.  Even though it was an expansion to the back of her head, it has relieved the pressure on her eyes and face, so everything looks less puffy and profound.  In six months, they will do the front of her skull (not the mid-face).  This will probably reshape her face in a much more distinct way.  But I am not ready to think about another surgery yet.  I have to keep reminding myself that future surgery stays will be measured in days, not weeks.  This one was so long due to the trach placement.

So how is the adjustment going to the trach?  Ummmmm, Serenity has made it easy.  One of the biggest things with the trachs is that they can get clogged very easily with the secretions from the lungs - which therefore blocks of the breathing - immediately a critical situation.  Well, Serenity has such a hard, forceful cough, we are rarely having to suction her beyond "maintenance" cleaning.  She also figured out how to "talk" around the trach within a week.  This is amazing!  It also gives a safety factor of her being able to communicate to us if something isn't quite right.  Handsome and I are finishing up the last of six classes this morning on trach care/emergency care.  It is a little scary, honestly.  But I keep reminding myself that God was sovereign before the trach, and He is sovereign now.  Serenity is never out of His Hand.  There is great comfort in that.  If I trust His plans are perfect - even when I don't understand them - then I can rest in His Hand.  This does not mean that nothing bad will ever happen - and that the pain wouldn't be devastating - but it does mean that nothing will happen outside of His perfect plan.  Ever.

I had planned to update the blog every other day or so with new prayer requests and updates.  But then real life got in the way.  By the time I get home from the hospital and give everyone some lovin', I am so tired I just sit and hold someone until it is time to start the bedtime routine.  When I get up in the morning, my time with my Savior takes precedence - and I need that time so desperately! - and then it is time to start the day rolling again.

I am so humbled and grateful for all those that have helped us - my parents, Grammy Caroline, my sisters, Handsome's parents and those from church that have brought meals.  It amazes me that so many people would give so much for my family.  It is amazing too, how knowing that someone else is bringing dinner is such a relief.  The very long drive home from the hospital saps the last of my energy.  I have a huge amount of compassion now for those who have to commute in traffic every day.

Today, a home care rep from the hospital is bringing all the supplies and machines we will need.  I have found in the past that it is a little unnerving to see all this "hospital" equipment in my home.  All of the sudden it makes things feel very critical and scary, even though it is all here to help us.  I am trying to gear myself up for that.  It will actually be nice to have a day or two to get everything arranged and in place before she is home - though I would prefer to have her home instead!

I need to get the day rolling - but I know it is bad when The Testy Chef says, "Mom, you need to update your blog!".....Thank you for all the prayers and support, I can never tell you what it means to me.  Please pray for peace and strength for these last few hospital days.  Thursday and Friday will be a little more difficult as Grammy and my parents are flying out for much needed vacations.  In God's grace, they were scheduled long before the surgeries - I know that they would have been cancelled otherwise.  But it I see it as such a gift to them all after some busy, busy weeks.  Pray for Serenity's peace.  I am afraid that she thinks she has just been moved to a new orphanage.  On Saturday, we did see her dealing with some depression, poor baby!  Yesterday, we finally got the "okay" to take her anywhere in the hospital, so The Helper and I took her to the cafeteria.  She was so excited!  We will do the same today after the last training.

I am anticipating a wonderful Friday night with us all home together again!  Handsome has spent almost every night at the hospital - what an amazing, wonderful man I have been given! - and if he is home, I am at the hospital....just need us all together again.  I have told the kids that Saturday is just a "jammie" day.  They looked at me like I had finally lost my sanity - I am never up for just a "jammie" day...but it has been a long three weeks!

May everything be to His glory!

Until He comes...

Sunday, November 9, 2014

Quick update....

Just have time for a quick update.  Serenity's vault expansion (adding to the back of her skull) went very, very well.  The doctors seemed very pleased.  They said that she will need surgery to the front of her skull (not the face) in about six months. 

So now they are trying to work her slowly of her pain and sedation medications.  She is really having a tough time with this, plus lots of vomiting from having that area of her body operated on.  She is not really eating.  Worse still, she is not drinking.  She has to have thickened liquids due to the trach and she is NOT happy about it.  This morning she was simply refusing to drink. :(

Please pray for her comfort, for smooth easing off the medications, and that she will eat and drink.  All of this is critical to her moving closer to coming home.  Pray also for Handsome and I as we have 3 days of training this week - as long as Serenity is out of the ICU.  Please be praying these are not delayed.

Loving this sweet girl and wanting her home!


Saturday, November 1, 2014

The Update...And Litte Rudy

I really meant to get a post up before Serenity's surgery, but the time was just not there.  So here is the update....

Serenity had her trach placed on Tuesday.  The surgery went very smoothly - Praise God!  But, we were told she would be in a medically-induced coma for at least 4-5 days.  It turns out that this is a very delicate balancing act - they don't want her completely out, but they don't want her wiggling around.  Hmmmm, how do you do that with a human-dynamo?  They are also having to have her in arm restraints (nice, soft bracelets around her wrists, tied to the bed) to keep her from pulling it out - or the NG tube through her nose.

I am just worn down emotionally right now...so hard to get the words to come but this is just HARD.  She is miserable....completely miserable.  The hardest thing for her is that she can't talk or make any sounds.  I have been told that this may come eventually - either from her figuring out how to talk "around" the trach or with a "speaking valve" with the trach.  But for now, nothing comes and it is scaring and frustrating her.  There is no way to really communicate to her what has happened, so it breaks my heart.  Also, being the human dynamo, she HATES being restrained.  She probably has quite a bit of pain around the incision, but it is so hard to know with her what is pain and what is frustration.

Just pray for my little girl - this is so hard.  I could type out in detail all she is going through - but I just don't have the energy today.

We were able to get a meeting with "Home Care" that will train us to take care of the trach.  I keep pushing - to the point of being amazingly annoying, I am sure - that we have to be ready to take her home as soon as possible.  Those that remember her buzzing around the ICU at top speed know exactly what I am saying - but there are so many different nurses and doctors, not everyone knows my little firecracker yet.  We need essentially 12 hours worth of "training" - but they only usually do 2 trainings a week.  WHAT?  We are not staying in the hospital 3 weeks just waiting for "training".  My understand is - and no one has really contradicted me - that she will be ready to be home within a week of the cranio vault expansion surgery on Friday....but most kids stay in the hospital for weeks waiting for the caregivers to be trained and to get a home nurse assigned.  WHAT?  WHAT?  I just can't wrap my head around that.  We are not going to have a home nurse if I am able to do all her care myself - and we need to get this training done!!!  Right now, after talking with them a great deal, there is the potential of being able to get home sometime around the 14th if everything goes smoothly.  Oh, how I am praying for this!  She NEEDS to be home, we need to be able to be with her - the drive there is so long in traffic and it is very difficult to balance all the needs around us.

Yet, even through the difficulty - I am praising God that she is here.  She is in a place that can do these amazing things for her health.  A place that she can live life to the fullest.  This is Handsome and my calling, our ministry.  She is not sitting in an orphanage slowly dying and becoming more and more incapacitated.  This gives me great peace and great strength.

Please keep praying for Serenity's peace and comfort - as well as all the details to getting her home.  The next surgery is Nov 7th.  So close, yet so far away!

LITTLE RUDY


We are this little man's Angel Tree Warriors.  He has caught the hearts of several of my kiddos, so we are praying and doing what we can to find him a family.  The goal of the Angel Tree through Reese's Rainbow is to raise $1000 toward his account.  Honestly, without God's grace, I don't see that happening - but the other goal is that we get his precious little face seen.  My prayer is that you see him and his little face stays in your mind - that you would pray for him every time you think of him.  Pray for a family to choose him though there is nothing "special" to his picture and his story on the surface.  But he is a real child - just as real as your favorite child in your life.  He needs a mommy and daddy.  We have seen the profound impact of not having a family in both Serenity and Hope.  Please print out his picture and pray for him!

If God leads you to donate, the link is here.  I see the $1000 as his plane ticket home - but more importantly, I want him to have a family!

Until He comes.....

Tuesday, October 7, 2014

The days are racing by...

I can't believe it has been over two months from my last update!  Time is just racing by...

Where to even start?

Serenity....I think this girl is giving the medical community gray hairs!  After the stay in the hospital, the bad oxygen rates, etc., it was decided that a sleep study had to be done to help prioritize what needed to be done first on her huge list of medical to-dos.  Wow...the results were pretty conclusive.  She stops breathing 94 times per hour.  I cannot even wrap my head around this.  I know how hard she struggles to breathe all night long, but WOW!

This led to the trach being now the only thing left on the table of options....but then that set off a whole new struggle to determine what and when.   Then, as all of that was being discussed in the medical "round table" of experts, we went to the optomologist.  I need to stop thinking that anything will be simple and easy with my little pixy-girl.  They found that the pressure of the skull on the brain is causing a massive amount of pressure on her optic nerves - which will lead to blindness if left untreated.   Oh, and she has horrific vision on top of that!

That result caused the situation to go from serious to critical.  But it still was a can of worms as to what to work on.  It turns out that if a child has been oxygen deprived, as Serenity has at night, when they "fix" that (through the trach), it can cause the brain to swell....and she has no room for that to happen.  So, to make a long medical go-around short, it has been decided to do the trach AND the skull expansion at the same time.  WOW, again.

The surgery was put on the fast track and we were scheduled for October 1st.  I was still trying to grasp hold of the situation emotionally....but then Serenity got a really bad cough/cold/runny nose and that was the end of the Oct 1st date!  Now it has been rescheduled for Nov 7th - a much harder time of the year for us.  This is planned to be a 4-5 week stay in the hospital - so after Thanksgiving.  Ugh.  Handsome is in the retail world, so that is really tough timing.  But we always come back to God being Sovereign.  This is all within His perfect plan.  The plan may include stretching our faith and our family ~ but in the end there will be glory to His Name.

So emotionally, where am I with all of this?  That is probably more complicated than the doctors trying to come up with a good plan of treatment.  I want her to be healthy and free of the struggles to breathe and the pressure on her brain!  I want to see how her life will change - dramatically or not?  I want her to grow and thrive and enjoy life.  But a trach?  Ugh, that hurts the heart.  Something else to mark her as "different".  It will also most likely change or completely take away her precious little voice.  We were told that some kids learn to speak "around" the trach (with a trach, the air doesn't reach the vocal cords, so there is no sound) but it is a very different sound.  Some kids can learn to function with a speaking valve - one that only lets air in, and not out, so the air does have to move past the vocal chords.  But only some kids can handle this and it still changes their voice.  Serenity has the sweetest little "HI!"....well, not "little", she is VERY loud...but it is precious.  It is hard to think of that being gone.  Right now, the doctors are saying she will have the trach for at least 3-4 years, until they do the mid-face expansion several years from now.  I haven't thought as much about the skull expansion ...other than I am very happy the will not shave her head.  They will just shave a small strip that can be covered up the the other longer hair,  I am so thankful for that.

While all of the coordinating for the surgeries is going on, Serenity failed another hearing test.  Oh, my goodness!  The poor girl!  So among all the other things, she needs to be put to sleep and have a thorough hearing test done via brain probe.  This will tell them what type of hearing aid that she will need.  So many, many things!

But I am so grateful she is here! I am so thankful that the doctors can fix each thing one by one.  I praise God with an overflowing heart full of thanks.  What will life be like for her without the constant pressure on the brain?  When she can see with glasses and hear with hearing aids?  When she can breathe and sleep soundly?  She can do so much even with such huge limitations...my kids laugh that she will have super powers by the time they are done!

So please pray with me for Serenity.  Please pray for health before the surgery and for skill for the surgeons.  Pray for peace and comfort for her as there is really no way to explain any of this in a way she would understand.  Pray for Handsome and I as we try to balance all that needs to be done.  Pray I can learn to care for the trach quickly so she can come home faster.  Pray, pray, pray!

Hmmm...what about everyone else?  Those who are schooling are moving along in their studies.  My mom is keeping Smiley, The Prince, The Professor, Romeo, and Snip very busy.  The oldest, The Helper, The Warrior, and The Testy Chef are busy with online classes.  The Boss and I are working on preschool. 

Grace is recovering well from her hip surgery.  She had another round of Botox to release her tight muscles today - looking forward to some good months of stretching her muscles.  We are still praying that her scoliosis is holding steady and not getting worse.

Hope...my dear girl.  We had a really, really tough stretch where she completely reverted back to where she was at when we got her from the orphanage.  She stopped moving completely and was continually hitting her head with her fists and her toys.  It was really, really hard - and honestly, frustrating.  I don't know what brought it on.  Thankfully, we have now come out of it again after about 8 weeks or so.  She is scooting on her bottom again and interacting with toys.  She still has such a long way to go...but again, I am just thankful she is here.  That I can hold her close and dream big things for her.  I can praise God for her and pray He heals her in His perfect plan.

My time is gone again (as Mimi is trying to suck on the computer).  Before I go though, I want to introduce you to little Rudy:

This little pumpkin is in a large Asian country.  He is 3 years old and has Down Syndrome.  He has captured two of my kids' hearts.  Snip and The Professor pray for him and donate to his account through Reese's Rainbow.  In fact, the entire $53 in his account is all from the two of them.  I am not sure what about him has drawn them - so I am assuming it is the Lord touching them for some reason that I cannot see yet.

Every year, Reese's Rainbow does an "Angel Tree" - encouraging people to donate to the accounts of little ones with Down Syndrome.  The money in the accounts are given to the families that choose to adopt them.  An average adoption costs $26K - $30K - this is a lot of money for just about anyone.  Because my kids love little "Rudy" so much, we have signed up to be his Angel Tree Warriors.  We will work to raise $1000 in donations between November 1st and Dec 31st.  But more than money, I want to encourage people to pray for him.  Pray that a family sees him and falls in love - that they are willing to do whatever necessary to redeem this little boy - to give him a hope, a future, and a family.  Pray big things for this precious little man....

Until He comes ~ we will praise Him.


Saturday, August 2, 2014

Prayers, please...and a Serenity update.

Please pray for my dear friend Susanna from The Blessing of Verity.  This precious woman and family have been one of the two top inspirations for me through the last few years as God has called us into the world of special needs adoptions.  I cried and prayed and cried and prayed with her for little Tommy with the million dollar smile to be adopted.  God, in His wonderful grace, provided for Susanna and her family to be the ones to rescue him.  She was so in love with this little man - it was amazing to behold.  Two days ago, God called little Tommy home to Him, a little over a year after he came home to Susanna.  I don't have any details other than it was an accidental drowning and that Susanna is blaming herself, though those involved say it was just a tragic accident. 

I cannot even imagine the grief and pain.  This is a road that every parent prays they never have to walk.  Please lift her up in your prayers over the next weeks and months.  That our precious Savior would carry her and her family through this time of unimaginable grief.  I trust with everything I am that God is sovereign and has a perfect plan ~ it is just hard to understand at the moment.  But just because I cannot understand, does not mean that it is not true.  Oh, sweet Savior, please carry my precious friend.

It is hard to move on to a Serenity update when I just want to grieve for my friend, but I don't know when I will get another chance for a bit....

Serenity's surgery was on July 25th.  She came through the surgery very well though there was some concern during the surgery about her breathing.  Everything appeared to be just fine that afternoon, so Handsome and I were fully expecting that she would come home the next day.  Ummm, no.  This was the first time that Serenity had been hooked up to oxygen monitors while sleeping at night.  We knew she had sleep apnea - thus the reason for the surgery - but we just didn't realize how bad it was.  In general, healthy people have an oxygen reading of 95-100 while sleeping.  When we brought Romeo home from Guatemala years ago, the hospital staff freaked out that his numbers hit 82 occasionally.  The removal of his tonsils and adenoids ended the 2 month long search for what was wrong with him health-wise.   So we have some knowledge/experience in this area.  But even with Serenity's tonsils and adenoids out, she was in the low 80s, dropping into the 70s.  This was not what was expected! 

This lead to a holding pattern at the hospital - they wouldn't let her come home because of the numbers during the night were so bad...but they didn't know what to do to improve the numbers...so just endless hours turning into days of waiting.  On Sunday, it was proposed that she have a trach tube installed.  I think that was the moment I finally understood how critical this all was - not just urgent, but critical.  We obviously have been-there-done-that on a lot of medical issues, but it still doesn't make it easy to dive in happily to such a huge event.  Thankfully, I am in touch online with many moms with different medical experiences.  They were able to tell me that it would be much like the g-tube; scary at first, but doable. 

But this set up a whole new set of circumstances - mainly how to cover work for Handsome during a long hospital stay.  Just as we got the "troop movements" put in place (as all the planning here is called), the doctors on Monday afternoon took the trach back off the table and sent her home with oxygen and monitors while they came up with a plan.  Relief....temporarily.

Deep sigh...more medical equipment and monitors.  I was pretty surprised at my dread of another medical adventure, as this is exactly what we knew we were getting into.  I guess even when the head and heart are right, the emotions can be very hard to combat.  The first two nights were really bad.  I was up at least 11-12 times each night.  The first night was all due to the sensor coming off her finger.  So, I had to get up and replace it and then the machine would reset.  The second night was a combination of the sensor coming off and her oxygen dropping below the 82 mark - one time even down to 69!  This is brain-damage territory - really not good.  The last two nights were much better.  In fact, last night it didn't go off at all!  But I know from experience that this is just the beginning of a very, very long journey.

This was emphasized by several phone conversations I had with several doctors.  There are a great deal of conversations/meetings going on in the background of what to do next.  The main doctor does not want to attempt anymore surgeries (the oxygen concerns are the same for surgeries as they are for sleeping) until her airway is more "secure"....but they don't know how to secure it without surgery...and round and round it goes.   The next step is an official sleep study done at the first part of September and then conversations/decisions from there. 

I think it is hard to wrap our heads around how serious this is because she is so healthy during the day.  In fact, the doctor said, "We are just in amazement that she can be so healthy and happy during the day with such low oxygen numbers at night."  Hmmmm. 

I know that the plan includes a surgery in 3-4 years that pulls the front part of her face forward.  This is major, major surgery - like halos and facial braces holding the front of the face out, etc.  (With kiddos with Aperts, the front triangle, including the nose, does not grow at the same rate as the rest of the face, causing this area to "sink" into the face.)  This surgery will help pull out the area around the airway, hopefully eliminating the breathing issue.  If they do this surgery too soon though, they will have to repeat it in her early teens.  Oh, no!   However, if they cannot come up with another way to ease the problem, this is exactly what they will need to do.  BUT this leads back to the airway needing to be secured, especially for such a massive surgery - which puts the trach tube back on the table.  Oh how my mama's heart hurts!

As always this time of year, my thoughts and prayers are full of what we need to do/change/adjust/expect for the next year to begin.  (Our lives do revolve more on the school year than the calendar year)  I am trying to assess what the issues with Serenity will mean and how to plan for it.  This includes new sleeping arrangements so she is with me and I can take care of the monitors...which means Hope needs to be moved.  She has been with me because she still fusses a great deal some nights.  It is very much like a chain reaction in the effects.  One of the things I have noticed with the very large family is that many things that seem "small" in comparison can throw off the smooth (or relatively smooth) system we have in place.

I need to get the morning rolling as we have a birthday party for our summer birthdays tomorrow...which means making cakes and cleaning today.  I love having company but the preparation ahead of time is really difficult.  We live in every inch of our house...so it isn't like we can clean it once and be done.  We need to "major" clean it and then keep updating the cleaning until the company gets here.  Sounds tiring, doesn't it?

Please pray for Susanna.   I cannot imagine....

Friday, July 25, 2014

Breathing....

First, I want to start off by thanking all of you that are praying for us.  There are some days that I just know that God's grace is being poured out in abundance upon us.  He promises to hear our prayers and to carry us - our life is a living example of that!  It touches my heart to know that people with their own busy lives, with their own praises and requests, their own needs, take the time to lift us up as well.  I cannot express what an encouragement that is to me.

This morning, Serenity goes in for her tonsils/adenoids removed and tubes placed in her ears.  This is normally an "easy" surgery.  However, given her special needs - including her personality!!! - we are not sure what to expect.  The doctors are also taking special precautions.  She will be staying overnight at least tonight and possibly tomorrow night.  In addition, the doctor reserved an ICU bed for her "just in case".  That makes my heart tremble just a bit, honestly!  Knowing our little firecracker, she will either be wanting to run around right after surgery or she will be testing our faith with complications - either way, we will need your prayers and His grace! 

Handsome will be the one staying with her.  I still struggle with the change in our roles a bit.  I can truly see that I need to be the one at home, especially with Little Man's arrival.  But it is hard to kiss my girls goodbye as Daddy takes them away to the hospital.  I am so thankful for God's provision on this, but it tests me in a whole new way!

Grace is doing so very well recovering from her surgery!  Her spica cast is beginning to really smell though, despite our best efforts.  She is scheduled to get it off in about 3 weeks.  We had a heat wave here just after she got it on.  Once again, God had arranged provision way ahead of our need.  When we moved into our home over a year ago, we had to replace the furnace.  Given where we are and the lack of gas lines, a heat pump was the best option.  It automatically comes with air conditioning.  I told Handsome at the time that there was no way we were going to spend the money to run the air conditioning given that our area only gets a heat wave about once a year!  I should have known as soon as I said that!  So fast-forward a year and I am so thankful for God's provision for Grace's comfort.  It looks like this week may be hot as well, so I will thank Him for the cool air and trust for the provision to pay for it.  (Then, I will go back to our "no AC" vow. ;-) )

Grace continues to be such a joy in our life.  She is Handsome's reward at the end of a long day.  He still cuddles with her every night as the day winds down and scoops her up every morning as the day begins.  I am amazed at the Lord's gracious gift to my hard working husband.  He fiercely loves all his children and each one has their own niche in his life, but Grace is his peace right now.  What a precious thing.

As for life in the rest of the family?  It is a busy summer.  I am learning in yet another way, to let go of self and rejoice for others.  I don't like "busy" - I want a "quiet" calendar.  But I have realized again, that is not necessarily what my kids want.  They want to be seeing friends and going places - to enjoy their break from school to the fullest.  I also have to remember that even though each mark on the calendar means I am busy, it doesn't mean each child is busy.  Today may be the "Big 3" busy with youth group, but the younger ones are at home.  Tomorrow it may be four doing things, but the others are not, etc.

Even though it is busy, it is a little hard to believe that the summer is almost gone.  I tell Handsome that I feel like on May 31st, we are at the top of the slide and then "zoom"....we are at the bottom of the slide and it is time to start school again!  Once again, it is so true for another year.  I am seeing the end of summer quickly arriving.  I have to laugh once again at all my big plans for this summer.  As the summer closed last year, I was determined that this summer I would finish painting the house and garage, have a garden going, and work on at least several areas of our overgrown, wild yard.  (We are now on 5 acres - what a gift - but Handsome and I laugh that it feels like a half an acre due to the the overgrown blackberry bushes everywhere!)  I certainly didn't picture that I would be bouncing a cranky baby and dealing with multiple surgeries!  I, of course, had planned for spaced out surgeries - not bunching them altogether due to a pregnancy!  God's plans were obviously different - and I praise Him for that.  So we will survive another year with one side of the house a different color....and blackberry brambles still taking over.  I finally picked one 10 X 15 area that I will get landscape fabric and bark on, just for my own sanity.  (But right now, all the supplies are stacked up and waiting....hopefully they won't still be mocking me as we start school on August 25th!)

I am starting to feel like I can breathe again.  I find that with each new baby or adoption.  There is a "fog" that surrounds the first two months of each new addition.  I don't see it at the time - in fact, I would insist that it wasn't there at the time!  But then as we pass the two month mark, I do realize that in a way, we were in survival mode and now we are finally getting into the new "normal."  We were given a really nice baby swing to use by some friends and it has made a world of difference.  I am able to snuggle him in and have a small period of time in which I am free to tackle the dishes, laundry, or paperwork pile....or just snuggle another precious little person. 

However, there is a cost.  If he sleeps well in the swing, he doesn't sleep well at night.  So then the endless debate begins - stuff done during the day or sleep at night?  It really should be an easy answer, right?  I think that if I could count on getting a good 4-5 hour stretch of sleep, it would be an easy answer...but so many nights, there are repeated needs of kiddos...so it makes for lots of "cat naps" but not real, restful sleep.  (I can hear an "amen" from some of my friends!)  So every morning, I think that it is more important to have the freedom during the day to get things done, but then by 4 in the afternoon, I am longing for sleep instead.  And not just that "boy, a rest would be nice" but the "I am feeling nauseous because I am so tired" type thing.  Once again, I need to be trusting that my Savior will provide for all I need...even sleep.

So as I pray for the days ahead asking my Savior what my priorities and goals should be, one of the things I have realized is that my three girls - Serenity, Hope, and Mimi - have hit their "happy" place...and this is not necessarily a good thing.  They are more than happy in what they can do and aren't seeing the need to do more.  For example, Hope is safe, well fed, and slightly mobile.  All the basic needs that were denied for 5 1/2 years are now met and she doesn't see the need for more.  So most days as we put her on the floor, she will pick one toy or thing, scootch to it on her bottom, and then "pick" at it the rest of the day.  If we move her away to something else, she will just wait until we look elsewhere and will move right back and begin "picking" again.  Her therapist is really working on teaching her to walk, but like Mimi, she really isn't interested. 

So, I am praying for ideas and opportunities to press each of my precious girls forward in their development.  There are endless ideas and resources out there, but I know from experience it is very easy to plan and even to buy things, but the implementation is the key.  And that depends on so many things that are outside of my control - like others' needs, bad attitudes, paperwork/medical issues that need to be taken care of, etc.  If you are praying for us, will you lift this up as well? 

For Serenity, my focus at the beginning will be communication (either speech or sign language) and more directed play.  Not just wandering from one mess she makes to another.  She still doesn't play with toys and probably won't if she doesn't learn "how" to, beyond throwing them or putting them in her mouth. 

For Hope, both moving and communication are on the list.  Specifically walking or walking in a gait trainer.  The communication is much more difficult.  She doesn't even grasp the concept of communication being interactive.  Having Little Man, I am more painfully aware every day of what she has been denied.  He cries and someone picks him up and soothes him. He coos and someone coos back.  He smiles and gets smiles in return.  He knows already that if he does something, something will happen in return.  Hope has never had that.  As a baby, no one came when she cried.  No one answered back when she cooed.  No one returned a smile.  No one "talked" with her.  It is amazing at the hole this has left in her life.  It almost wires things "backwards".  Now when she cries and we try to respond as we would any of our other children, it does not soothe her, it winds her up more.  When she cries or fusses and we talk gently to her or try to rub her back or soothe her, she screams and pulls away - or she just ignores us.  This does not mean that we will stop, but it does make it harder.  Again, God is showing me the damage that has been done.  If it is harder for me to want to soothe her when she doesn't respond or responds negatively - and I know why and I know she needs it anyway - how much harder is it for her to understand how to interact when all she has been given is negative responses?  We have to begin at the beginning again - but with a child in which all the natural desires to interact (such as with Little Man) have disappeared or have been warped into something to fight against.  It hurts my heart to even think about. 

For Mimi, the goal is also communication and mobility- but again, her little life stands in stark contrast with Hope.  Mimi, without miraculous healing by our Savior, does not have the potential that Hope does to communicate.  Cognitively, she is just not able to.  However, because she had a family from the very beginning, her little life is so different!  I was determined from those first days that she needed to always be with me - always seeing my face and hearing my voice.  So even though she is not able to communicate with sign language or words, she knows if she cries that we will respond.  She knows that her laugh will make others laugh.  She knows that her facial expressions trigger a reaction.  The difference is almost beyond description.  Even though I don't think she will truly have language skills, I still want to fill her time with practice of these things.  The biggest challenge with Mimi is that she does not "mimic".  So if I say "Dada", she will not even try to repeat it.  If I do a motion with my hands, it is not repeated.  If you really think about it, it takes away the starting block for building any communication.  Our only option is to use things she already does and try to turn that into a language of sorts.  For example, when she was pretty tiny, I am thinking around a year old, she began to purposely "blink" at me.  I immediately began to blink back at her.  It became a game that she still plays to this day.  Eventually it has gotten to the point that if I blink first, she will blink back at me.  But this is has taken many, many years of playing this game.  Rereading what I just wrote makes it sound as if she doesn't interact with us, but that is really not the case either.  She is very interactive and loves people.  She will crawl over to us and pull up to a stand and growl at us until we pick her up.  If she wants someone to turn on the TV (she loves music videos), she crawls over and makes a specific sound until we come.  But I can probably count on one hand these type of specific communications.  She "talks" to us all the time, but it is in her own delightful way and on a very limited level.  I know this is a hard thing to grasp if you don't have a child like this, but I saw it summed up on day on a poster.  It said, "They say you will never talk, but as your mommy, I hear you "speak" every day."  This is so very, very true.

My time is gone this morning as the sun is fully up and the house begins to stir.  I will continue breathing and praying and praising God even as I am counting the benefits versus the drawbacks of drinking another cup of coffee this morning.  He is so good.  Even when life is hard, He is good.  Maybe I should say especially when life is so hard, He is so good.

Here are a couple of pictures to tide you all over until I can get more of the rest of the gang...I am limited right now to the pictures the kids take of each other and baby - so needless to say, most of them aren't posted publicly because of the crazy poses and angles! :)

 The Prince

 Little Man

Hope

To Him be all glory, honor and power.

Monday, July 7, 2014

Grace's Surgery and EFBF

What a month has gone by since my last update!  Almost every morning I think, "Today I will update the blog!"  And then another day goes by....or I decide that maybe what I would write that day would be worthless because I was so tired physically and emotionally.

The good news is that Grace's surgery is done and was successful!  Praise the Lord.  She went in on Monday the 30th and came home on the 3rd.  Handsome had to stay with her because there is no way I could do it with Little Man.  It is hard for him to be away from work for even a few days, so I am very thankful he was able to do this. 

Grace will be in a half-body cast for at least 4 weeks, poor baby.  The doctor decided that the second hip did not need to be operated on, so we are also very thankful for that.  She did much, much better at the hospital with Daddy than she did with me in November for the g-tube.  Again, God knows best.  I was pretty frantic that I was not the one staying but with cell phones if the nurses needed to ask a question, it went very smoothly.

She had to have a special car seat and we have to be careful on how we position her at home.  Her pain meds are also critical at this point.  We were a little late this morning and she was hurting.  It broke my heart.  Please continue to pray for her.  That she heals quickly and well.  Pray for us as we maneuver through the next few weeks with the cast.  The day(s) right after the cast is taken off will also be incredibly hard....so many prayers would be appreciated.

In the meantime, I am suffering with EFBF - Extremely Fussy Baby Fatigue.  This is a condition in which your baby is so fussy that you are worn out body and soul.  It quickly develops a partnering condition of EFBA - Extremely Fussy Baby Anxiety.  This is when your baby is so fussy that you have to strategically plan everything - including things like how to go to the restroom - around your baby's screaming.  When you look at everything you have to do through the lens of, "How do I do this with one hand?" while bouncing your fussy baby with the other hand.  Both can be downright debilitating.

Yes.  Right after my last blog post, my content baby turned into our typical extremely fussy baby.  I had forgotten how hard this is.  I am just not hard-wired right to handle a screaming baby - it just completely undoes me.  Don't get me wrong, we do let him cry. We have to in order to keep life moving here, but it is just not something that I am able to get used to.  Our hardest time right now is at night when I need to feed and rock Mimi to sleep.  By the time I lay her down, I am wiping back the tears at hearing him cry in the other room - as well as feeling so badly for Handsome, The Warrior, or The Testy Chef - whoever has the turn of trying to walk/bounce him until I can come get him.  By the time I have him back, I am so wound up that I cannot sleep....leading to more Fussy Baby Anxiety! 

So right now, even the most mundane like showering, using the restroom, folding laundry, and cooking has become epic in proportion. However, because this is our ninth or tenth kiddo like this, I do know that it is just a season.  That eventually (with some a little over a year) this too shall pass.  I am so in love with this Little Man and so thankful for this precious gift my Savior gave to me that I cry over him daily.  Even during such a hard, hard time, I know that I have been blessed beyond measure - far beyond what I could ever have imagined.  I know this seems contradictory to some, but it is the truth.  It is a huge struggle to get through the days, yet I am so filled with joy over him.

My precious family did go camping in mid-June.  The Helper and The Testy Chef (my two oldest daughters) stayed home with me and the "Little 5" to help and to finish their schoolwork.  It was a really difficult week with Little Man and trying to keep the other four well taken care of so the girls could study.  BUT the amazing thing to me - though some of you will laugh - is how QUIET it was (other than Little Man!).  I could not believe it.  I just soaked it in every day.  In addition, a completely amazing thing happened - something I was told was true, but had seriously doubted over the years...when I had a few seconds to clean something...it STAYED clean.  Really!  Did you catch that?  It STAYED clean.  I have to say, as silly as it sounds, this did give me some hope for the distant future.  I might, just might, have a clean house some day....ah, bliss!

The week after, my two oldest girls took a trip to Colorado with their Bible quiz team.  The Helper's team took second in the nation and she was personally the third highest quizzer in the nation!  I am so proud of them both!  While they were playing and getting a much deserved break, Handsome, The Warrior, and I had to hold down the fort at home.  These are really tiring days!  The day after they got home was Grace's surgery - so the team at home shifted again to the Big 3 kids and I while Handsome was in the hospital with Grace.

This morning, my Big 3 are headed off to youth camp.....Can I say that I am really dreading this week?  I don't think any of them read my blog regularly, but I won't post this until they are gone...two of the three have offered repeatedly to stay home and help me.  It makes my Mama's heart melt at their kindness, but there is no way I am going to let one of them stay home.  Their youth group is an amazing group of kids and leaders and they deserve the break!  But....I am still dreading this week.  After the Big 3, I have three 10 year old boys, an 8 year old girl, and a 7 year old boy.  I am realizing more and more that they just have not been expected to learn/do the same things as the Big 3 because they are so capable....so this is a good week to really work on some training.  I have realized, especially with the boys, that there really seems to be a 'you-got-it-or-you-don't' gene for taking care of smaller kids - and I get that.  I don't expect them all to be kid-helpers.  But I should be able to say, "Will you take care of ______?" and have it get done.  Hmmmm, another area to work on.   Regardless, I would so appreciate prayers for this week.

Once the Big 3 are back, life still stays busy for July.  Lots of doctors' appointments and Serenity has her surgery for tonsils, adenoids, and ear tubes the end of this month.  Another extended family camping trip in there as well.  I just keep praying that although I am exhausted (EFBF and EFBA), that my kids are loving their summer and will be filled to the brim by the time we need to focus on school again.  Praying for the strength for today....and tomorrow...and the next day....

Here are a few photos for fun:
Hope playing

Serenity with Grandpa!

Hope with Smiley and The Boss

Hope on her hands and knees!!!

Hope with Grandma

Mimi with Grandpa

The Testy Chef with Little Man

Grace and Little Man

The Boss

The Warrior with Little Man

Serenity (She is so easy to get fun pictures of!)

Little Man

The Helper and Serenity (both addicted to selfies).