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  Please leave me a comment if you are interested - the comment will not be published.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.