Thursday, April 24, 2014

Racing by...

Where have the days gone?  Good grief...I am sorry for the neglected little blog!

First of all, Grace did not have her surgery.  She began throwing up in the middle of the night before the surgery and that was that.  She is rescheduled for the end of June.  While it was a bit of a relief at the time, it will be much more complicated when Little Man arrives and a hot summer with a half body cast.  Another thing I am just trusting our loving Father has a plan!






Little Grace has been so happy these last few weeks.  We are not sure why, but we are enjoying it so much.  She "sings" to us and laughs and smiles.  It is just pure delight to us.  She is doing well in therapy as well.  Although it may not seem like much, she is trying to move her little body...what a wonderful thing to behold!  A child who was written off as nothing - seeing her grow in her own ways.  Praise the Lord, oh my soul!  We love this child more than could ever be imagined.  She is the apple of her Daddy's eye and a favorite of all her brothers and sisters.  God took something that was such a huge step of faith and has poured blessings over us in abundance!  Praise His holy name!



Little Hope is slowly, oh so slowly, opening up to life around her.  I am more convinced than ever that there is so much more going on in her little heart and mind than we ever guessed.  But there is such scarring and damage from her first 5 years, at times I am sure it is a very painful growth.  I am sure there are days she wants to retreat to a world of "nothingness" just to avoid the growth pains.



She has started demanding more food on her own.  This is HUGE....it is a huge step that she is pushing for something, anything she needs.  We knew she needed more calories, but just could not get her to eat more.  She is now eating double what she was a week ago AND she is drinking from a sippy cup with handles by herself!  Again, we praise the Lord!  Every little thing she learns she can do is one more step towards healing and growth. I know that it may seem so small...too small for our level of excitement...but it is not.  Not when we know where she has been and what she has had to endure - or go without.



She is also doing very well in physical therapy.  Mimi's therapist has taken over with her and has truly fallen in love with this little pixy girl.  She is so close to crawling.  I cannot even begin to measure how this will change her little world.  As well, she is actively playing with her sisters and brothers.  She seeks attention from Smiley in particular and he is more than happy to oblige.  What a gift God has given us in each child - each strength and ability.  The Helper has begun to come every week to therapy as well so that she can see what things she can work with Hope on.  How my heart overflows with love for each gift we have.

Mimi is turning 6 years old tomorrow!  This is so difficult to fathom.  This little tiny girl - hardly the size of a two year old...the little one that we didn't even know if she would make it to her first birthday...and here we are getting ready to celebrate her sixth!  I can't tell you what this does to my heart - again, the blessing upon blessing!  This has been an interesting few months with her as well.  After years of struggling to get her to eat even the tiniest little bits by mouth - she has decided that if Hope can do it, so can she!  She and Hope battle each other to be the first to be fed!  Another praise.  She still must be fed the majority of her food via g-tube because she just cannot get enough fluids/calories by mouth - but there is always hope for more.  In addition, it just adds to the input in her life - good foods, sweet flavors, joining with others as we eat.  She always comes quickly if she sees me with food and wants a taste - even if it is just a little.  Thank you, my Savior!



We have also seen another side of little Mimi as she purposely crawls over to Hope and angles her feet to kick at her!  We were so shocked the first time - not our little baby!  She wouldn't do that....would she?  Sure enough!  Poor Hope!  Mimi is also getting more demanding of sitting on my lap or snuggling - not the best development with Little Man just a few weeks away!  Big changes in store, little girl....just wait and see.

And then there is the hurricane....Serenity!  Yep, still have not found a way to summarize this ball of energy beyond..."wow".    We will meet with the ENT (ear-nose-and-throat doctor) on Monday.  He is the one that will need to sign the prescription for hearing aids.  I am beginning to feel a little frantic about getting them.  I need to know how much of the behavioral issues are simply her dynamic personality and how much is due to her being closed off in her own little world due to hearing loss.



This last Monday was a big day for her at the Children's Hospital.  Her CT scans were done and we met with a slew of experts.  I think I went into the appointment feeling pretty relaxed.  After all, they assumed the "worst case" scenarios with Hope and instead all was very, very good and she is a "textbook" case  for her surgery in about a year.  With Serenity, they have always been pretty positive...so just another textbook case.  Right?  (You know already the answer coming, right?)  Nope, not at all.  No textbook scenario this time.

Although she always charms with socks off of the doctors and staff - and although she is so capable in so many ways - there is significant pressure on her little brain from the skull malformations.  Much, much more than they assumed, even with a child with Apert Syndrome.  In fact, they showed me pictures of the inside of her skull - where there is massive "scalloping" of the bone where the throbbing of the brain is carving away sections of the skull.  Wow.  That is hard to even think about.  Her (wild) hair also does such a great job hiding her skull, it was pretty sobering to see how different it is from an "average" skull.

The discussions that went on in the room full of colleagues was a little sobering.  This is not a "textbook" situation after all.  We knew she would need surgery on her skull (obviously) and we knew that her mid-face would need surgery...in fact, there are a lot of surgeries we knew she would need to have - but it moved to a whole new level of urgency after the scans.

After much debate and discussion, it sounds like the approach will be to have her tonsils and adenoids removed soon to allow her to breathe better, especially at night.  (She snores like a boat full of drunken sailors.)  Then they will tackle the skull.  The goal is to shorten the height, while adding to the width.  She also has a significant hole at the top of her head (which is probably her saving grace right now) but will need to be closed.  The hope is to be able to add to the forehead enough to start to protect her eyes, which are significantly unprotected right now.  How hard it is to even fathom this.  Thankfully, God has brought another family into our lives - who have become the very dearest of friends - whose daughter has had numerous cranio surgeries.  So they can help us to know what to expect.  One of the hardest parts emotionally, will be to have her head shaved.  We try so hard to show how beautiful each of our children are - it is going to take some creativity to work with that shaved head, especially in the summertime!  It is silly when compared to the magnitude of her issues - but emotions are never rational, are they?

All of this to pray on, even as the days are getting so short before we welcome Little Man into the world.  Not quite 3 weeks left - how hard that is to believe!  They measured him almost 2 weeks ago and he was already at 7 1/2 PLUS pounds.  Wow!  No wonder I am so uncomfortable!  He may be nearing 11 pounds by the time he is delivered.  The Boss, our last bio baby, was 10lbs 1oz - so we will see if we have a new record holder.  Maybe a c-section is not so bad after all! ;-)

On a slightly different topic, I have been "chatting" via email with another mom of many.  A woman that I admire so very much and wish I could just have one cup of coffee with her in person!  We had to laugh as we both thought the other person was "superwoman" because of all she seemed to do...how silly to see how wrong our assumptions were.  So, I just want to share a few ways in which God has provided for what we have needed.

After my stroke in October, we knew that Handsome needed to go on the rescue mission to get Serenity and Hope.  That left me at home - in that very sick and tired pregnancy stage - taking care of the rest of the treasures as Handsome and my two oldest were gone for 2 weeks.  All I could do was pray for strength.  But God had a huge gift already in process for us.  The mother-in-law of a very dear friend told me that she wanted to come stay with me the entire two weeks Handsome was gone.  I cannot tell you how blown over I was by her offer!  I had always enjoyed her company although we did not see each other regularly - but I could have never imagined her making such an offer, especially living 90 minutes away over the mountain passes.  I couldn't help but think though that our chaotic crowd would scare her away before the 2 weeks were up!

Well, she came a bit like the magical elves in the shoemaker's shop and began helping with the cleaning and cooking.  We tackled serious housecleaning and organizing.  Every single closet, bedroom, and shelf.  In addition, she cleaned every carpet and scrubbed every surface.  We were both exhausted every night.  After the first week, she needed to go home for the weekend.  I was secretly afraid that she would not be coming back - that we were just too much to handle.  When she came back - to my delight!- on Sunday afternoon, she was glowing.  Hmmm.  What did that mean?  Well, she shared with me her plan....Would we mind if she parked a camping trailer under our carport so she could come over two days every week to help us?  What?  I just couldn't believe it.  I still can't.

I had prayed for at least a year that if we needed "outside" help, that God would provide it.  Although we have amazing family and church family, I just couldn't see anyone that could make that kind of commitment.  Well, He graciously and amazingly provided through this loving woman.  My kids now have "Grammy" in addition to their Grandma and Nana - and they love her.  She has them over for cups of cocoa in her trailer and she is always willing to stop and love on one of the little girls as they need it.  I cannot tell you how she has blessed us.  She doesn't even hesitate to tackle the overflowing laundry baskets - even when she left them empty just the week before.  I smile every time I see another indication of "Grammy" in my house.  I had given up on weekly dusting and sparkling clean floors long ago - and yet I have them now - at least for 2 days a week! - because of her generous love.  We still do laundry 6 days a week, all day....we still have to work to keep things picked up and in some sense of order...but she comes and helps pull it altogether again every week.  What an amazing gift from our loving Father.  She will come for 2 weeks at Little Man's grand entrance as well.  Ahhh...bliss!

Also, my mom, "Nana" has been homeschooling the youngest 5 homeschoolers this year.  Wow!  Another amazing gift.  She laughs that she went to college and got an elementary teacher's degree forty something years ago....only to use it now!  She is a born teacher.  After a rough start - as every homeschool mom knows! - they are in a really good groove.  This has freed me up immensely to work with the girls who have so many needs and to just meet the needs of such a large family - in addition to business paperwork for Handsome's business.

I am not superwoman - I cannot do it all.  Without this extra help, some things would have to be given up for a time...maybe even a long time.  We make every adoptive decision based off of whether we could do it ourselves if necessary - but have been so amazed by the gifts given to us through our loving God - using those willing to serve wherever He asks.  The days are still impossibly full.  I still cry in exhaustion so many nights - but when I see His faithfulness to provide all that we need, my heart can rest in peace that He is always with us.  I don't know what the future holds - but I have seen the One that holds the future...and He is faithful.  ALWAYS.

So in the coming weeks, please pray for Serenity's "game plan" with surgeries.  Pray for safety and blessing with Little Man's delivery.  Pray for His continued provision in all things.  Pray for wisdom and amazing patience for Handsome and I as we raise these amazing young people.

Please also pray for little Samson.  He is in a horrific orphanage - one that we are very familiar with.  I have been there - I know.  He has CP - untreated CP - that is pulling his body backwards into a position that is making feeding and even breathing very, very difficult.  Pray for a family to race forward to rescue him.   You can read more here .  Here are several pictures....please print them out and pray for him.  Please.

I know it would be so much easier to look away.  To just pretend we didn't know.  To not hurt and be horrified.  But we can do something....please pray for him every time he comes to mind.  He also has a donation button here that you can make a tax-deductible donation to a fund that will be given to a family that chooses to rescue him.

God is faithful.  Always.