Sunday, March 23, 2014

Each day a little closer....

Each day a little closer to our Savior returning....a little closer to summer sunshine...a little closer to meeting our new Little Man...a little more progress made in each life....

It is Sunday morning and I am listening to some fabulous hymns and the sun is shinning through the windows.  Today turned out much differently than planned.  It was supposed to be The Testy Chef's 16th birthday celebration.  Instead, we have sick kiddos.  This, besides being such as disappointment to all of us looking forward to time with precious family and friends, also adds a complication to this week. 

Grace is scheduled for surgery at 8 a.m. tomorrow morning.  The dreaded hip dysplasia surgery. :(  We have been warned this is a very painful surgery.  It is so hard as a parent to know you are choosing to put your child in pain.  I know that the pain now will save her a lifetime of misery, but it doesn't help my aching heart.  However, she had a high temperature yesterday and had a tough night last night with tummy and body aches.  This morning, she seems fine.  What to do?  The doctor wants to wait and see how she is tomorrow morning.  One part of me would be very relieved to NOT have to go through with surgery tomorrow.  But, I know that just means that we will have to do it this summer with Little Man in tow and Serenity due for some major surgeries as well.  But I also don't want to add possible huge complications to her body healing if it is already fighting germs.  I know that God will direct us, we just are not seeing which way this morning.  Will play the "wait and see" game until 6 a.m. tomorrow when we are due to check in at the hospital.

The weeks have been so busy.  I thought my life was crazy busy the last 10 years, but I really had no idea!  Every day I check the calendar to see what we need to accomplish for the day.  On the rare days with no doctor appointments, there is plenty to catch up on at home.  It is a bit dizzying!

Hope had her CT scans.  We are praising God that her brain appears to be in very good condition.  There is not pressure from the unusual cranio shape.  The doctor was very vocal in how happy he was with the scans.  He will want to do an MRI about a year from now and then make the final plans for surgery next spring.  For those who are interested, I did tell him that I was amazed that they could "close" the skull without putting pressure on the brain.  He replied that that is one of the things that they "plan and discuss" - they look at the room they have to close the skull and also have to take into account how much optical nerve they have to work with.  The distance between most people's eyes is abut 22mm.  Hope's is at least 66 mm.  That is a huge difference!  She has all the bones in the "right" places to move her face into a typical alignment, but they still need to be sure they don't stretch the optical nerves too far.  I cannot even imagine!  I guess that is why I am a mom and not a neurosurgeon!

The hard part of all the good news is that it becomes clearer all the time how much of her struggles are due to her neglect and abuse in her orphanage.  It is so hard to come to peace with the fact that her struggles were not necessary!  If she was treated as every child deserves to be, she would be so different.

We have had an interesting few weeks with her.  She is definitely making progress - slowly but surely.  We were amazed to see her rolling to get to where she wanted a few days ago!  This was on top of realizing that she is finally laying herself down or getting back into a sitting position by herself!  But it is always done when she thinks that no one is watching her.  Why would that be?  I can come up with a hundred speculations - but still would not have a definite answer.  Yesterday, when she thought no one was looking - she scooted on her bottom to get closer to her favorite toy.  95% of me is filled with joy that she is moving!  She is doing it!  It was as we had hoped - if given the opportunity, she would begin to figure these things out.  (In addition to the physical therapy she has once a week.)  But there is 5% that is honestly a little frustrated that she will only do it if she thinks we are not watching.  What would cause her to do that?

In addition to the progress though, we have had some pretty big battles over things we thought were done.  She is again crying most of the nights.  Not nearly as long or as loud as at the beginning, but still most nights.  Both she and I are exhausted when morning comes around.  She is also fighting me about eating her food again.  I feel like I have to have some seriously good wrestling holds to get the first few spoonfuls in her mouth.  She is also refusing to do things like "walking" to me at night while The Testy Chef or Handsome holds her up under her arms.  This used to make her so excited and happy!  Now she won't move her feet.  We still go through the motions, but it has made something that was so fun to see into a struggle.  All we can assume is that those things she can control, she will try to be in control of.  I am sure life is so different and that causes her stress - even though it is a "good" different, this is her way of dealing with it.  I pray for patience and grace and tender compassion for her - my frustration is really only my own selfishness.  I still wrestle daily with how much damage has been done to my daughter - it didn't have t be this way....

Serenity - wow, how many ways can we say "dynamo"?  Sometimes it has us all laughing long and hard - other times, I am ready to pull my hair out!  I am so thankful that we were given this gift - what a life full of sunshine!  But we need to figure out how to contain that energy when necessary!

She had a fever/cold the day of her CT scan, so they rescheduled it.  I was really disappointed - but as always, have to trust there was a reason.  It is now rescheduled for late April.  I am anxious to see what her scans will reveal and how quickly she will need to begin surgeries.  It is late enough in April that a surgery before Little Man's debut in mid-May will not be possible....but I am wondering how quickly after his birth we will be back in the hospital.  She sees the same cranio-facial team as Hope and they all were anxious during Hope's appointments to see Serenity.

We did have her hearing and speech evaluations done.  She has moderate to severe hearing loss.  The outer ear hears almost nothing.  She has significant fluid built up in the middle ear, but nearly perfect hearing in her inner ear.  The hearing tech said that almost all of her patients with Aperts have hearing aids, but we have to get a signature from an ear-nose-throat doctor to order the hearing aid.  She said that children with Aperts can have chronic fluid in their ears, plus there is also a significant chance that her tiny ear bones may be misshapen due to the Aperts.  But, it just depends on the ENT doctor whether they want to explore draining the ears or the misshapen bones first or just proceed with the hearing aids.  That appointment is at the very end of April.  The plan with speech therapy really hinges in many ways on what is decided with the hearing aid.  Our family has played for years with sign language, but it is time to take it up a notch.  Even though Serenity will be limited by the shape of her hands/fingers on what she can sign, it will give us the ability to better communicate with her.

NONE of this was unexpected or a surprise - but driving home from the appointment, it just seemed too much to process at the time.  I am sure it is due to the exhaustion and the pregnancy emotions - but I had to once again lay it all at my Savior's feet and trust Him for the strength and ability to do all that is in front of us.  I have said it before and say it repeatedly - all that we do is only possible by His strength and grace.  Every. single. thing. 

Little Grace is doing so well...depending on what happens with the surgery tomorrow.  She is so full of laughter and smiles right now.  I feel the need to clarify that many people would miss the delight she is because of how limited she is.  She cannot see.  She does not speak.  She barely moves.  But she knows her family.  She LOVES her daddy more than anyone else in the world.  She gets so excited when she hears his voice and makes cooing noises and laughs until he picks her up.  Her smiles are the biggest when she is snuggled in his strong arms.  It is a joy that makes my heart hurt to see them together.  This child who was just a "throw away" - that no one thought would ever be chosen - is now an infinite treasure to her family.  We cannot even begin to describe the love we all have for her.  Every child is precious.  Every child deserves to be treasured and adored - regardless of their abilities.  This is how Christ loves us.

Little Man seems to be gaining pounds per day.  I am moving very slowly - much more slowly than really I can for all that is still before us in these last 7 weeks before he debuts.  All is looking good so far - but we are trusting Him for all the details.  It never leaves Handsome's mind for long that this is considered an extremely high risk pregnancy.  I honestly forget.  In so many ways, except for the stroke and the twice daily injections, this has been an "easy" pregnancy.  I am guessing just because I don't have time to spend too much thought and emotional energy on it....I just need to keep moving and doing and laughing and loving until it is time for him to come.  As always, 7 weeks seems so far away on one hand and way too soon on the other!

We continue moving through each day with our eyes on the Author and Perfecter of our faith.  Trusting Him to provide all that is needed for each moment.  Some days in laughter, some days through tears - but always trusting.  There are hard things going on in the world...there are hard things going on in our friends' lives....goodness, there are hard things going on at home...but He is always faithful.  Even when we are not.

Please pray for Grace's surgery...for Hope and Serenity...for Little Man....for the busy days ahead.  As you are doing that, please pray for this little one.  His name is Samson on Reese's Rainbow.  http://reecesrainbow.org/70652/samson-438 This picture shows how significantly he has deteriorated in his 2 1/2 years of life.  He has CP, an ASD, and hydrocephaly - but that is not why he is like this.  He is in a horrific orphanage.  I know, I have been there.  Once again, another life that does not have to be this way.  Another life neglected and abused by those who are to care for him.  Please pray for a family to race forward to rescue him - that God would preserve his little life if it is His sovereign plan.  That the family has the courage, faith, and provision to move ahead on a difficult path quickly.


Come, Lord Jesus, come in Your mercy....

1 comment:

  1. I left a comment yesterday when I first saw your post, but it evaporated into cyber space! Anyway, just wanted to let you know how much I appreciated meeting your whole wonderful family. I am praying earnestly for you all, and especially sweet Grace as she faces this painful surgery. Thankfully, you are resting in the arms of the Great Physician, who loves her even more than you do, and will carry her through in His strong arms. He even has room in those arms for all of you - how great is that?!

    Psalm 18:1-3 - "I love you, O LORD, my strength. The LORD is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold. I call upon the LORD, who is worthy to be praised..."

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