Saturday, December 21, 2013

The Update....Finally!

I am going to try to type this as Serenity is running her little hand all over the screen. :)

I know what it is like to want to know how a new family is doing - I check the blog every day!  I meant to update this immediately - and more often during the trip - but as always, real life gets in the way.

The flight home was rough on Handsome as Hope was just DONE.  She didn't want anymore changes, no more noises, no more!!!!  The flight attendants were so helpful and just let him hide in the back of the plane, but that is not an easy way to spend 10 hours.  She had done fairly well on the first flight of 2+ hours, but not now.  It also took a loooooooong time to get through immigration once they finally arrived.  Needless to say they were worn out and ready to be home.

I just can't describe the feeling of seeing the girls in our home.  It was just unbelievable to see them HERE...not just pictures and dreams.  Hope was still overwhelmed and crying, but was willing to let me hold her on my lap where she could see out the window.  Serenity was more than happy to meet all her new best friends and explore EVERYTHING!  The Helper had already been chosen to be Serenity's "buddy" so we were very excited to see them bond instantly - God's grace and plan.  Ahhh, the sweetness of it!

The Helper has more than earned her nickname this last week!  She feeds Serenity - not an easy chore with a tummy that never feels full, but a mouth that cannot really chew anything but soft things.  Lots of eggs, tiny pieces of pancakes, cut up bananas, teeny pieces of sandwich, etc.  I am amazed at how much this little punkin can pack away!  I knew from my visit with her in June that she wanted to eat all the time.  I never saw her without her clothes on and her little face has a "chubby" look to it - so I assumed she was pretty pudgy.  Boy, was I wrong!  She has the skinniest little legs and arms.  She eats a great deal - but moves even more!  We will look into other issues just to make sure her body is processing and getting all the foods and nutrients that she needs.  But honestly, I think she is just sooo busy, there isn't any extra to add to her body weight.


This little dynamo moves from the moment she gets up until we finally lay her in her crib at night.  She can climb in and out by herself, so it limits being able to keep her there....so in the morning she gets up and wakes up all her sisters one by one!  It is one of those things that you have to laugh or cry.  We tend to chose laughter!  We are trying to Serenity-proof the house - but that is not proving to be an easy task!

She and The Helper had great fun in the snow the other day.


Serenity is up for anything and everything.  Her favorite thing to do, when not playing with a sister or brother, is to carry around a little mirror and admire herself.  It is so funny to watch.  She makes every face imaginable.  What a ham!

Bedtime has been a challenge.  We keep her awake until 9 with the rest of the kids.  Some nights this is harder than others.  Every night, up until last night, she screams and cries when we lay her down, even though she is exhausted.  Last night though - HALLELUJAH! - she laid down and went to sleep without a tantrum.  After she is asleep, she does sleep through the night - but she snores so loudly!  The noise always changes too.  There have been several nights that Handsome and I have gotten up to see what the noise was, only to realize it was Serenity.

The biggest challenges with Serenity will be her temper and bonding.  She is a very determined little person and was very spoiled at her orphanage.  (I would choose spoiled over neglected any day!!!)  She wants what she wants, when she wants it.  This has been the pattern in the orphanage - just go from one worker to the next until you get what you want.  She has never been taught any differently until now - this is just life in an orphanage - but boy, is her little world being rocked.  We are not going "hard nosed" on everything right now, but the areas that we are holding the line have been very hard on us all.  It will take training for a long time to begin to see progress in this area.  The bonding will also be a big issue.  She loves EVERYONE, but doesn't realize she belongs to specific people now - not just whoever is "on duty" today.  She would go with anyone at the moment without looking back.

She is not a cuddler - she is much too busy for that.  She does not show affection, other than she demands more of one person than the others - poor Helper!  However, she IS a mimic.  This will help her make progress in every area of life faster than anything else.  The Helper is already working on the signs for eat, please, and all done.  Serenity is able to do this - but not really willingly!  I also had a happy moment when  The Boss came up and gave me a rare hug...and then Serenity came up and did the same thing!  Little triumphs!

My sweet Hope.  That is definitely a harder story to tell.  I knew that her orphanage was beyond horrific.  I knew she was extremely institutionalized.  But how it breaks my heart to see it reflected in her little life every day.  She is overwhelmed by everything....everything.  The closest comparison that I can come up with is that of an extremely cranky newborn.  Why are they crying this time?  What just set them off?  Why won't the "normal" things calm them down?  Of course, there are no "normal" things for my little girl.  She cries (very loudly) with seemingly nothing changing.  And cries, and cries, and cries.  She is not easily calmed by holding and rocking, but eventually this will do the trick.  She cries when we start to feed her...she cries when we stop...she cries when we pick her up...she cries when we put her down.....  None of this is a surprise, but it is wearing to do day-in and day-out.

In the hotel, Handsome and Testy Chef were only able to feed her Gerber food or Pedialyte squirted through a syringe.  I was immediately able to switch to feeding her with spoon - but she was not happy about it.  I tried blending good soups and different foods and feeding her that, with no success.  It is Gerber fruits or nothing at all.  Because she was not getting any protein or all the vitamins she needed this way, I did add 2 servings of Pediasure between 3 feedings of Gerber foods.  I also have added a bunch of Gerber cereal to the Gerber foods, which she is not happy about.  (I am also slowly adding vitamins and probiotics daily)  This is not my favorite way to feed her - I prefer homemade over processed any day...but we are just doing what is possible right now.  It does appear that she has some differences in her mouth, even beyond what I originally assumed - this may have something to do with it or it may not.  She has already gained 2 POUNDS in a week - despite my concerns.  Which begs the question - what did they feed her in the orphanage if she can gain that much in a week on so little food?  One of many questions that plague this Mama's heart daily.

She can hold herself in a sitting position for a very long time and can get herself into that position from laying down with difficulty.  But she cannot lay herself down carefully - she just falls to the side.  Then cries when her head hurts. :(  This will be our first home-therapy goal.  The last two days though, she has just wanted to lay down, even when I put her in a sitting position.  This is not good.  She needs to be building muscles, not retreating.  So, today I pulled out Mimi's walker that she no longer uses.  Hope was not happy, but she was upright.
I am not expecting her to try to walk by any stretch of the imagination right now, but at least she is putting some weight on her feet and in an upright position.  Eventually, I think her natural curiosity and movement will get the walker to move a bit.  Right now though, she does not appreciate movement, so walking will not be a draw until she gets past this fear.

She does not sleep well.  She cannot make it until the 9 pm bedtime, but then is up several times at night and then before 6 am.   She cries as soon as she wakes up.  I try to have a cup of juice ready for her as this seems to calm her a bit.

Both girls will go to our local amazing Children's Hospital on Dec 30th.  This will be an appointment with 4 of the 9 doctors that will see them as they build a plan to do surgeries and treatments with them.  I am hoping we will get some initial answers to some of our immediate questions though.  I will also have them both evaluated by Mimi and Grace's therapists.  I do not think we will start therapy outside our home immediately with either one, but these therapists know us and will give us things to begin to work on at home.  For Hope especially, I think it is much more important to have her become relaxed and comfortable at home.  Mimi is very low muscle tone and Grace is very high muscle tone - so we have plenty of work with quite a range.  As I said, laying herself down carefully will be the first goal.

So what does a "day" look like right now?  Handsome and I are up before 6 with Hope, whom I hold and rock while Handsome holds Grace in an upright position while she coughs. :(  We have yucky coughs and colds right now and it is very difficult for her to clear her throat.  Eventually Mimi and Serenity join the mix as the older kiddos get up.  I wake everyone up by 7:15 and they begin their jobs while I start the feeding/changing routine.  Mimi fed by g-tube, Hope by mouth, Grace by g-tube while Testy Chef gets breakfast on for the rest of the precious crew.  The Helper gets food cut up for Serenity and she eats with the rest of the gang and Handsome.  With school these last days, they need to have their jobs done and at the school table by 9 a.m.  My mom, Nana, asked to work with the middle five this year - AMEN! - so she has The Prince (2nd grade), Snip (3rd grade), The Professor (in 1st-3rd grade depending on the subject), Romeo (4th grade), and Smiley (5th grade).  She makes it fun and challenging and then gets to go home and rest!  The oldest three - Testy Chef (10th grade), The Warrior (8th grade), and The Helper (7th grade) do an online accredited program.  While this is going on, I am taking care of the littlest and trying to do laundry, paperwork, and therapies.

Grace needs her arm/hand braces.   We are slowly working on this now that she got her new round of Botox this last week.  It is not comfortable for her, but so necessary.  She has two sets of braces - "daytime" ones that do some stretching and "nighttime" ones that really force her wrists, fingers, and thumb to the right positions.  Here is a picture of her with the "nighttime" ones.
Her little fingers curl tightly into her palm, her thumb holds closely to the fingers, and her wrists tilt outward/downward.  For those of you familiar with this, it is an opposite direction than usually happens.  As she curls her fingers, the ring and pointer curl completely in and the pinky and pointer stay straighter at the knuckle and then curl in toward the other two towards the top of the finger.  The thumb just presses closely to the pointer, it is not curled under the other fingers.  

At first I really struggled with doing the splints.  There was a nagging thought of "why do that to her" since she will probably never use her hands.  But the more I understood the long term problems, the more I knew it needed to be done.  Skin is a "connective" tissue - so it will start to adhere to itself if not moved and stretched.  To the point that it will rip apart if we tried to open her hands after letting it go for too long.  The casters were concerned already by the depth of the potential damage to her skin.  In addition, it will start to develop sores - and if we cannot open, clean, dry her palms, it becomes a very, very serious problem.  They have also found that if the muscles learn to be stretched out and relaxed, it lessens every day pain to the person.  

Right now we are doing an hour on, an hour off.  The term "nighttime" is only because most kiddos do better with the harder stretch at nighttime - but we are also doing them for short periods of time during the day.  The goal is eventually 8 hours of "nighttime" and 8 hours of daytime.  It makes my Mama's heart ache right now.

We also work with her on basic stretches and movements as well as "tummy time" to try to strengthen her neck/back/chest muscles.  None of this is easy for her - though she does seem to enjoy holding her head up for brief periods of time.  

My long term hopes and dreams for Grace?  Well, I believe completely that God could choose to heal her completely or partly if He chose to do so at anytime.  But I also know that it isn't what He chooses to do many times.  So my hopes and dreams are based on what we see right now.  I would love to she her be able to hold her head up without effort.  I would also love to see her hands relaxed instead of curled.   Those would be my hopes.  My dreams would be that she could hold herself in a sitting position independently and maybe begin to explore with her hands - but this doesn't seem likely.  I remind myself though that I never thought Mimi would be doing the things she does now!

With Mimi, right now we are working (as we have been for years) on her lazy eye.  Unfortunately, she wants to go to sleep as soon as we put it on.   She goes and gets her binky and tries to curl up in someone's lap.   Here is The Warrior with a cranky Mimi with her patchy on.
As far as the rest, she is "this close" to walking independently.  PRAISE THE LORD.  But with Mimi it is all about motivation and since she can "bunny hop" crawl, she sees no reason to walk.  She is a stubborn little one for sure!  We have backed off of feeding by mouth for a while as we have seen that if she is working on one area (like walking) then she becomes delayed in the other areas.  She spends her time happily hopping from one place to the next exploring.

With Hope, we are working on snuggling and teeny new experiences every day.  With Serenity, we are working on obedience and containment of all that energy! :)

It seems lunch time comes very quickly.  It is time for another round of feedings, then everyone except the four special girls goes down for "rest time" where they work on homework, read, or listen to books on tape.  When they all get up, we do chores, playtime, another round of feedings, and I just go to whoever needs me most.  Dinner time, another round of feedings then finishing chores.  Daddy doesn't get home until close to 8 p.m.  We are ready for time with him until bedtime.  The last round of feedings end at 10 p.m., when I can finally close my eyes.  If it is a good night, I am only up once or twice with someone...if not, I may just get a handful of scattered hours before we start again.

Boy, how does it sum up so easily, yet is so complicated and tiring in reality?!?!

As I said in the last post, our life is HARD.  It never goes smoothly and there is always the unexpected.  ALWAYS.  Whether it is business paperwork, medical paperwork/calls, medical appointments, temper tantrums, sickness, a broken washing machine, or cranky kids and/or Mama.  There is always something for which we need His GRACE poured over us.

Sometimes there is something really big...like my stroke in October.  Sometimes it even comes in bunches.  I have been trying to get a post out ever since my stroke, and just have not been able to sum up the mass of emotions swirling through my heart and mind.

Before my stroke, Handsome and I suspected I was pregnant, but we had miscarried enough times, we assumed it would also be the case this time.  To be honest, I just assumed this would be the case because I didn't not even want to consider HOW we would do this.  I have gotten pregnant after EVERY adoption, so it shouldn't have surprised us...but it was always so very, very hard.  My pregnancies are hard and my newborns are CRANKY.  We had felt after so many miscarriage and so long between pregnancies (for us) that God had just closed the doors.  Instead of the despair I always worried I would feel, I felt a sense of peace that it was time to move onward to whatever else He had in store....I was surprised by the pregnancy, but felt it would end in miscarriage again.

The stroke was a difficult surprise.  It was a severe test of faith - and a test of my belief that God was always good - even in the hard things.   If it had happened to anyone else, I would be able to comfort them with Scripture that said exactly that.  But as I was laying in the hospital bed, my mind was a blank and my emotions were ruling instead of truth.  Based on the doctors reactions and my own weak strength, I was sure that I had lost the baby during the stroke.   I felt an overwhelming sense of guilt in my feeling of relief.  I couldn't wrap my heart around a stroke and the challenges it brought, adoptions to finish and the details with that, AND a pregnancy.  No one could have been more surprised then me when an ultrasound showed a little body and a strong heartbeat.  I honestly did not expect that.  I just stared at the little moving person on the screen with disbelief.  Right afterwards, I was ushered into the exam room to meet the high-risk OB I was sent to by the ER physicians.  I didn't know what to feel - but what happened next was completely unexpected.  

I really liked the OB as we began our initial chat.  She was very friendly and easy to chat with.  She asked a lot of questions and hid her surprise at the size of our family and pending adoptions relatively well.  Finally she asked if I was a person of "religious" orientation.  I said I was.  She said so was she.  I smiled, not sure where this was leading.  She said that she did not agree with abortion except in the most extreme cases....I hesitantly smiled - not sure where this was going....she finished by saying that she considered me one of these extreme cases.......What?....WHAT?...

Don and I had discussed many times over the years what we would do in this scenario.  But of course, as you discuss it, you are not scared and tired and overwhelmed.   But the answer instantly popped out - "That is not even an option."  She looked surprised and told me that I needed to understand we were talking about my life and that I needed to talk with my husband.  I agreed I needed to talk with him, but I told her it would not change the answer.  I already knew what he would say.  It wouldn't be said as confidently as all of our previous discussions - but I knew it would be the answer anyway.  She paused for a few moments and said that it would be very, very hard to find a doctor willing to work with us and that I needed to see a super-high-risk doctor.  She stated again that my life was at huge risk.  I said no again.  She sighed and then offered her hand for a handshake.  She said, " Well, congratulations then, I guess.  The baby looks perfect."  

As I tried to hold my tears in until I reached the car, I kept hearing her say, "The baby looks perfect."  How could someone suggest I kill a perfect baby for my own sake?  I know where she was coming from...I do.  But I also know my God is sovereign.  Even if He takes my life with 13 other children, He is sovereign.  I called Don and sobbed out the story to him.  He was in shock as well - but he said the same thing.  Abortion is not an option.  Even to save my life.  I went home in a daze, just to turn around and head back to the appointment with the cardiologist.

As I met with him, I told him what the OB had said.  He looked shocked.  He said, "Oh, no.  There are doctors that will work with you.  Here is one of them." as he handed me a card.  It was a doctor at the huge university about an hour from us.  I didn't want to have to drive into the city, but I had no other choice.

I had an appointment the next week for the cardiologist to run a scope down my throat to determine if there was a hole in my heart.  He did indeed find a tiny hole.  BUT this still didn't explain the stroke.  He said that up to 25% of the population also has this hole - there really had to be a clot to cause the stroke.  I still had no signs, indications, or predispositions to clotting - no matter what test they used.  There was still no explanation for what happened.  Once I clarified that it was not stress, weight, eating, etc that caused the stroke, I was ready to move on.  I do not think they will ever know why - only God does.  It was determined that I needed to take blood thinners, especially through the pregnancy.  However, the pregnancy complicated that.  So, I have to self-inject doses of blood thinners twice a day into the area on my tummy.  I will just say it is not fun or easy to do.

The next week was the appointment with the super-high-risk OB.  This time I went into the appointment as tense as could be.  I knew what others thought.  What would the new doctor say?  She said that the situation was indeed serious as the blood thickens and clots as you are pregnant, but she was also shocked by what the previous OB had suggested.  She said that they worked with very, very difficult cases, but this one wasn't even close to that.  She said the injections were exactly right and that they would just closely monitor me.  It also means another c-section, which I assumed anyway.

I am now 18 weeks along.  The doctor is next to positive that it is another little boy.  This will make 7 adopted/7 biological - 7 boys/7 girls.  So where am I at emotionally?  Honestly, I am still struggling.  Most days I am so busy, I forget I am pregnant.  I am not feeling Little Man move yet and I have medicine to control the nausea.  As this is the first pregnancy since I have figured out that I need to be gluten/dairy free, so I have gained a great deal less weight and feel much better - as long as I am not lead astray by a piece of hot pizza. :)   I WANT to be excited for Little Man.   I want to dream of little fingers and toes, that wonderful baby smell, and the peace of holding a little one in the middle of the night as everyone else sleeps.  But my emotions are still leading astray.  I can only think of the terrible tiredness those last 2 months.  The panic as I try to figure out how to nurse a little one as four other little ones - and several big ones need me NOW.  The frustration of supposedly not being able to lift over ten pounds for 6 weeks when my baby will be over 10 pounds at birth if he follows the pattern.  I have VERY cranky/fussy newborns into the first year.  I have had 6 of them - I have tried it all.  It is just part of their DNA.  Lord, You are in control, right?  You promise You are with me always?  You promise to give me strength and rest - or the ability to do without, right?

Here is our life...full of joys, sorrows, and complications.  Full of countless ways to trust Him more.  I rejoice at all He has blessed me with - from my oldest treasure all the way down to the newest still growing inside - from those "home grown" to those gathered from the far corners of the earth.  I rejoice in this season of celebrating my Savior's birth.  Knowing He came to rescue me from my sins.  I rejoice....I rejoice even that He knows I am being stretched and is still singing a love song over me.

The Helper felt that everyone should see the amazing sight of all our stockings hanging together:


Our simplified Christmas tree - this year we only put up the ornaments from this year and last and a few softies for the girls....


And finally, a new bonus at our new home...we can put all the presents OUT OF REACH from little hands and use them as decorations...


Rejoicing in my blessings...trusting Him for the future.

Until He comes - He is worthy of praise.

5 comments:

  1. Oh my sweet friend, you are so strong! Thank you for sharing your journey so honestly

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  2. Oh Amy. I cried when you started describing the meeting with the OB. My answer would be the same as yours, and I can state that unequivocably... but how difficult, how heartbreaking to even have to give that answer with thirteen other children. Your faith is truly inspiring. I suspect that sometimes you may not feel like it, but I can tell how fully you trust God - and then I looked at the picture of all your stockings, and I thought - 'With good reason, too. Look at all the GIFTS God has already bestowed on her!'. I can't imagine how hard your lives must be and I do appreciate that you're honest about that, but I also appreciate your ability to see the joy in the small things and the gifts of God in your lives. Please know that I am praying for you and your whole family, all the kids, including the precious unborn one. You and Handsome are truly special people and I thank God that He made people like you, who, even when you feel lost yourselves, teach others something huge about trust, hope, faith, and love. Your family is so beautiful. You must be so proud of every one of them :)

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  3. As an adopted child who so desperately needed the love of a family, and finally got it, I just want to say "thanks." Thanks for loving all of these children. They are each so amazingly beautiful. I can only imagine how blessed you feel to parent these little miracles. I pray that 2014 holds many joys for you.

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  4. I cannot thank you enough for this comment - I needed to hear it today! :)

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