September 23, 2014 -- Three Weeks Post Op!!!

Hello dear ones!  I have another update for you on Hope's continued recovery from the major spinal and pelvic fusion surgery on Sept 2nd. . . we are 3 weeks out from surgery now, and here's how things are going. . . 

I think the most interesting thing about Hope's recovery is that she continues the pattern of a good day, followed by a bad day, then a good day followed by another bad day, and just keep hitting repeat!  The good days feel so encouraging and fill your heart with hope (today was one of those days!), and the bad days are discouraging and a continual challenge to find the strength, trust, and wisdom needed to persevere (yesterday was one of those days!).  This roller coaster can be extremely wearing and exhausting, but it also keeps you looking to the only One who can sustain and see you through. . . our awesome Heavenly Father!  How dependent I am on Him!  How necessary it is to find a continual renewing of my mind, heart and perspectives in the Word of God!  How much I long for rest and refuge for my soul and the souls of my precious family as they struggle alongside me. . . and I can only find it in God and the time that I earnestly seek Him!

A dear friend shared a Psalm with me yesterday in the midst of a hard day of watching Hope suffer. . . it was a sustaining drink for this thirsty soul from a faithful God who never forsakes!  The girls and I studied this Psalm together tonight before bed, and it was a precious time together!  Let me share it with you. . . 

Psalm 131
"O Lord, my heart is not lifted up;
my eyes are not raised too high;
I do not occupy myself with things too great and too marvelous for me.
But I have calmed and quieted my soul,
like a weaned child with its mother;
like a weaned child is my soul within me.
O Israel, hope in the Lord from this time forth and forevermore."

A childlike trust in the Lord is what I desperately need to not only claim, but live out. . . this picture of a child curled up in the comfort and security of his mother's arms. . . how much more so it is with my Heavenly Father.  I am not placing myself there every moment of every day. . . but I know this is where I must strive to be, and by God's grace, He will continue to work in me, teaching me to run to His lap and His arms!  I don't understand God's plan in all of this, I don't understand His timing in it either, but I don't need to. . . I just need to understand that He is over it all, and He is to be praised, worshiped and trusted for His faithful and holy character!  And some day, I will be with Him!!!  What a hope we have through Jesus Christ!!!

So how is our girlie doing???  One thing that is definitive of this journey is she is getting better!  It is just a slow process with bumps and hiccups, but it is progressing, however slow that may seem some days!  What a opportunity for me to be challenged and grown in my trust and patience of the Lord for what each day will hold, for what the future will hold, both near future and far!  My mom mind and heart goes there often as I care for our dollie girl. . . 

Hope's pain control continues to be a work in progress, especially as we continue to wean her off the Morphine.  We have ONE Morphine pill left!  Last week we started giving just half a pill every 12 hours, so her pain control continued through the night (otherwise her nights were miserable and sleepless).  This has proved very successful, however we are now close to out of the Morphine and have needed to make another decrease.  We are now giving half a Morphine pill in the morning, and nothing but Tylenol and Ibuprofen overnight.  Each adjustment in the pain medication routine comes with a "bump," which can be hard and discouraging, but God has given us one tough kiddo, and she has pushed through the pain to continue to be doing what she needs to!  The good days make it hard not to do too much when she feels good, but then she pays for overdoing it on the bad days, and has to pull way back, and the suffering makes it hard to make her be up and moving like she needs to.  So goes the roller coaster. . . please pray that we would continue to seek and find ways to provide balance in these highs and lows in her pain control!

Over all though, Hope is having less pain!!!  Her spasms are rare now, and even when they occur, she doesn't scream or usually even cry, as she said that they are very short.  Her neck is less painful.  There are days where a certain move or bump will cause a jarring effect and she describes it as feeling like her neck or back are breaking.  So being super careful with her transfers and gentle with all movement to not cause any undue stress on the hardware holding her together right now!  Rods can break, and screws can pull out, so this is going to be an ongoing concern until Hope's back has fully fused (6-12 months).  Mostly Hope complains of pain with transfers, and especially when sitting up in the chair.  She describes her pain more now though as feeling "sore in her back and neck" which is much better than the stabbing muscle and nerve pain that was more prevalent in the first two weeks of recovery.  Hope's left side that has been so stretched out is still more tender and she guards it, but again less so than before!  Some days are certainly worse than others for pain. . . this past Sunday night, Hope did not sleep a wink as she was in constant pain all night, calling for help hourly in her misery throughout the night, even with all the pain meds we could give.  It is hard to see her continue to experience so much pain, but we are so thankful for the many ways that God comforts her and how she continues to trust Him in it!

Hope's overall movement is increasing!  She moves her legs quite well.  She is getting stronger with her transfers on/off the toilet.  She is able to turn her body from side lying onto her back now independently, which is wonderful as she has figured out how to move her torso and hips as one unit so as to not do a twisting motion which causes the spasms (she will not be able to twist anymore with the fusion).  Her balance is improving although not close to what it was before.  She stood at the sink to brush her teeth this week. . . the hardest part was trying to lean forward and spit into the sink when her back does not bend at all!  She also took a few steps this week, which were amazing to see the control she exhibited!  We all encouraged her how amazing it looked to see her taking such deliberate steps at this early point in her recovery.  After her daddy laid Hope back in bed, this conversation ensued (I thought you'd enjoy hearing it!). . . 

Daddy:  "Hope, I think you might walk again some day!"

Hope:  "I don't want to walk, daddy."

Daddy:  "Why Hope?  Why do you say that?"

Hope:  "Because I wanted God to get the glory."

Daddy:  "What do you mean honey?"

Hope:  "I wanted God to get the glory if I walked again some day.  Now the doctors will say that they fixed me and that's why I'm walking."

Daddy:  "Oh sweetie. . . God is still going to receive the glory if you walk again some day, I promise!  It belongs to Him and He will receive it!  You might have been so sleepy that you don't remember in the hospital, but the doctors are still saying that even with how straight you are now, you will NEVER walk again.  They said that they did this surgery so that you will be able to sit and stand straighter and with less pain.  They said no to physical therapy for you towards walking at some point, because they believe you will never walk again. . . so don't worry. . . God will get ALL the glory!"

Precious. . . to communicate with this passionate and vibrant child, who's mind God has restored, and in who's heart He has firmly planted strong roots of faith and love for her God. . . precious!  I have another post coming soon with more of Hope's thoughts and how God is working in her heart through this!

Hope had a second shower this past weekend.  It was "miserable" according to Hope, and I quite agree for my poor munchkin. . . however, it was also much better than the one before!  So as hard as these things continue to be, they still show progress.  I trimmed away more of the dressing on Hope's back that continues to be a concern and bother.  This time on the top end where the dressing was coming loose and hair was going down into the dressing and sticking to all the goopy adhesive.  It was nasty and painful and certainly a concern for preventing infection.  So I trimmed it back and placed another dressing over the upper edge that sealed it up again and now prevents Hope's hair from going under.  Scrubbing off all the nasty adhesive from her neck was off the wall miserable for her, but she got through it, and she is much more comfortable now!  Hope's hair was not nearly as matted and the combing out went much better.  I even was able to braid and style her hair for the first time. . . of course styled in the way that Hope creatively chose!  Here is a picture of her and Gabi from Sunday morning. . . 

Love these precious girlies!!!

We went through all the motions of getting ready for church on Sunday morning, but didn't end up getting to go.  Gabi woke up sick and stayed home from school on Monday as well. . . so much sickness going around and we are so thankful that Hope has stayed illness free!  Hope sat up in her chair for the entire church service as we listened online to the live service.  We did this hoping to "practice" for going to church next week!  Hope asked to go back to bed as her neck and back were hurting too much about 10-15 mins before the end of the service, but I asked her to wait for just those last few minutes.  The we got busy with braiding her hair and doing their American girl doll's hair.  Then after the picture above, she decided she wanted to stay sitting up for her daddy to see her when he got home.  Then when he got home, she wanted to go outside on the deck with him while he bbq'd lunch, to experience "the great outdoors" in her precious words!  Love her expressive thankful little heart!  Then she continued to sit up to eat lunch and then she finally went back to bed. . . it ended up being 4 hours up in the chair!  But as I said with the ups/down, it was WAY too much, and she paid for it the rest of the day and that night was awful.  She started getting myoclonic jerks (involuntary jerking movements in her arms and legs) that evening, and after not sleeping all night with the pain in her back and neck, she continued with worsened myoclonic jerks all day Monday.  She eventually had a small seizure on Monday, even with cutting her school day down to just a couple hours in the afternoon.  But, after a good night's sleep on Monday night and giving her seizure med a bit early, she has had no further myoclonic jerks or seizures, so we are so very thankful, as I was wondering if I needed to call the neuro nurse about an increased seizure med dosage.  Seizures always feel scary!

So to end on a good note of thanks to the Lord for the good days. . . today was another good day with yet another milestone. . . Hope left the house for the first time since returning from the hospital!  Hope's sweet auntie came to visit and we went out for lunch together.  Hope chose a local favorite Chinese buffet for her treat!  And to top off the special occasion, when Trevor went to pay, the woman explained to Trev that a customer who had already left, had already paid for our lunch!  It was pretty cool to share this generous kind act from a stranger, with Hope as yet another way that God continues to pour His blessing and grace upon her and our family!  Hope tolerated the short drive just fine, and was up for a total of about 1 1/2 hours, and did not seem to suffer any increased pain this evening.  Here is a picture of Hope standing next to her auntie after lunch seeing how much taller she is and if she had outgrown her auntie. . . not quite yet, but she sure is close! 

Standing next to Auntie Leanne to see how her height compared!!!  Auntie's still got a bit of a lead on ya, Hope!!!  : )  It's all up to her legs now!!!

We figure that with auntie being about 5' 2" that Hope must be between 5' and 5' 1" which is an incredible increase in height!  It still looks odd to see her so long and so stretched out in her bed with no room to pile things at the foot of the bed anymore, and so tall and straight in her chair!  But the best is to see how tall she stands!

Well dear ones, I've loaded you up with more update info. . . praises and prayer requests!  We will take Hope to see the surgeon for a follow-up appointment on Friday.  I believe that he will be removing the dressing, which you can pray for Hope, as it will be quite miserable!  I am looking forward to seeing that incision though and how it is healing.  A nurse always likes to view an incision and having it covered has felt odd for me!  : )  I can't remember if Hope will require x-rays on Friday as well, or if those will be taken later.  You can keep her in prayer for that as well, as she is terrified of x-rays and finds them painful and very stressful.  The surgeon mentioned wanting to repeat the x-rays to double check that the hardware is holding up and looking good still.

Thank you as always, for you amazing love, support and continued prayers for our girlie and her family!  May we all find rest for our weary souls and comfort and security on the lap and in the arms of our awesome Heavenly Father. . . life is hard, but we have HOPE as we put our trust in the Lord!!!

You are loved, dear ones!!!