Monday, March 30, 2015

In the middle of a whirlwind....

I keep putting off posting, thinking I will get a picture of Serenity's hand.......and that has not happened yet. :)  I will try again today.  But here is the update...

Serenity's hand surgery (that took twice as long as they anticipated!) was very successful!  The weeks in the cast were hard on everyone - patience was greatly needed here for one bored little girl.  After the full cast, they made her a splint to keep her hand straight and the fingers spread apart so the skin grafts would heal.  Can't quite call that a success as she quickly figured out how to get her fingers free! 

We were all excited to see what her reaction was to having fingers when they took the cast off.  There was really no way to be able to communicate that to her ahead of time.  Handsome was the one who took her and he described it as stunned shock.  True shock.  Not the joyful shock we expected, but stunned shock.  I can't even imagine what it must have felt like to bend areas she had never been able to move before, especially with skin grafts, nerves, etc.  the hand had quite a covering of scabs and funny colored skin due to all the grafting and work that was done.  Come to think of it, maybe it was better I didn't post pictures!

We tried to prepare the rest of the kids, but they still had a hard time with it the first few days after the cast was off.  It isn't pretty, but now she has function.  Very hard for young minds to weigh that the right way.  I had talked with The Helper about Hope's surgery - how I thought I might have a rough time saying goodbye to the little face I loved even though the new face would be better for her long-term.  Frankly, she thought I was crazy.  But she told me after seeing Serenity's hand change, that she finally understood.

Two weeks ago, they changed the hand splint to a different splint.  Now she can move her wrist, but the fingers are kept apart by a brace so the skin does not start to grow back together.  I will still try to get a picture of that one.  Just for those that are interested - we found out with Grace that skin is a highly connective tissue.  That is how God designed it so that cut heal - the skin grows back together.  However with Grace's curled hands and Serenity's new skin grafts - we don't want the skin to grow together in those areas - thus the braces for them both.  This new brace she will wear for a total of three weeks day and night with brief times off to wiggle and clean it.  Then it will switch to just night time for 3 months. 

The day we switch to just the brace at night is the surgery on the other hand - next Tuesday.  The other hand already had one finger separated in Bulgaria, so it will just be separating the other pinkie.  I am praying this is a MUCH easier surgery that the other.  Then we will do the whole cast, splint, different splint thing all over again.  It is a GOOD thing - but a little hard to gear up for. :)

In the meantime, Grace went in for a recheck on her hips from the dysplasia surgery last June.  She also saw the rehab doc (who does the botox and braces) and the neurologist for her seizure meds.  The hips look fine but they have decided that she does need to wear a brace to help slow the scoliosis.  This was HARD news.  She will have to be in the brace 18 hours a day - only off when she lays flat.  Handsome goes to pick up the brace today.  We were told that it is fairly soft.  Sometimes though, I have noticed that we just hit the point where something seems to be the tipping point and it suddenly feels like "too much" for a child to need to have done.  It is purely emotional - but it still happens.  For some reason, the brace just seems to be that tipping point emotionally.  We just really, really don't want her to have to have it.  We will obviously do it because it is best for her - but it just rubs the heart the wrong way right now. :(  I am sure in a few days it will just be part of life, but this morning it hurts my heart.

As we were emotionally stewing on that, Serenity and Hope had a follow up appointment with the craniofacial doctors.  Serenity came to have a spot on her head checked.  Skip the next few sentences if you have a queasy stomach!  There is one spot along her incision that we just couldn't get to heal.  Her hair would get stuck in it and when we tried to wash it, the whole scab would pull off.  A spot about the size of two quarters.  I worked and worked since the surgery in November to get it to heal.  We had a nurse look at it once and she gave us some ideas, but it still kept getting pussy and pulling off.  I finally cut a big spot of hair all around it and it seemed to be finally healing.  But then when I washed it one day, I realized that a piece of the plastic "skull" was poking out.  I have a strong stomach - I have done a lot of medical things - but this made my stomach flip and I turned green.  Especially when the piece pull out when I was cleaning the spot again.  Eww!  It honestly looked like a little clear piece of lego.  This was two days before the appointment.  When the surgeon's looked at it, they said sometimes that happens, and now it should heal again - to just keep it clean and the hair cut back.  Okay.  I felt like we had dodged a bullet on skin grafts, etc.  So back home trying to keep it clean....only to find another piece is sticking out now.  (Stomach does a little flip, ugh.)  So I have a feeling we will be going back soon.  My guess is that they will move her next surgery sooner so they can repair the area after they expand the forehead.

Hope was there for a pre-pre-op appointment after an MRI.  Hope has not had to be in the doctor's office for quite a while other than a brief check up in November.  We keep her home other than a few trips to church or family.  This was the first time in a waiting room in almost a year.  A very quiet waiting least until we got there.  Hope makes all kinds of noises - it has gotten the nickname "smoping" here.  It is hard to describe other than loud bursts of noise with severe body motions - like a yell with hands flopping everywhere, and then another noise with hitting herself.  We know that if she is feeling excited or nervous, there will be "smoping" going on.  Well, this definitely triggered it.  I am going to lay this out there, just in case there are other moms with severe kiddos reading this - this was the first time I was embarrassed by her behavior.  I wish I could say I was as strong as other moms I have read about that just keep smiling and don't worry about what others thought - but not this time.  I was embarrassed and heartbroken over how "severe" she must have looked to others.  Her face always draws attention - and I understand that - but the behavior was really, really an attention-getter this time.  It started to freak out the other children there.  I finally found the quietest corner I could and wrapped her in her blanket and hummed to her - all the while trying not to cry.  I love my girl - the weight of the damage that has been done just felt too heavy at the moment...

The MRI was in the early morning, so by the time we got to the afternoon appointment, she was "smoping" in full gear.  However, the waiting room at the hospital was much noisier and full of life so it didn't seem so bad.  Plus, I was bouncing a loud, unhappy Little Man and trying to keep Serenity reigned in - so I was a bit distracted. ;-)

The MRI looked very good to the surgeons.  Once again, we had a room FULL of people as every visiting or training doctor wants to come take a look.  There was actually a doctor from Poland there this time!  They talked with me about how they would do the surgery.  I will try to scan the MRI and their sketching and post it here.  Fascinating.  Simple fascinating.  And a little stomach churning. ;-) 

Now we just wait for surgery dates for Serenity and Hope - as well as going to see dentists and optomologists for them both.  Mimi also needs to see the eye doctor as it has been quite a while and her lazy eye is not looking any better.  So still a great deal of appointments and decisions out there.

There is a lot more to say, but I am out of time this morning.  We are headed off to the federal building to get our fingerprints done for our dossier.  The process has really come to a complete stop until we get our USCIS approval - very disheartening - so I am glad to get this show on the road again.....

Thank you for all your prayers - 


  1. So happy to hear an update! Our Ana is supposed to get a spinal brace, too... The last time I made an appointment everyone got the stomach flu so I had to cancel... It looks like Ana will have very similar gear and surgeries to Grace.

  2. If I saw Hope acting up (smoping) I would probably look I am embarrassed to say but not out of judgement but rather fascination. It's the nurse in me I see kids with disabilities and I always wonder why.Was it caused the disability? What made them like they are. My oldest is autistic (he's 31) and when he was little there weren't nearly as many autistic kids as there are now. When he would flap and scream I would get embarrassed somewhere along the line I thought BITE ME it is what it is! Hold your head high! Just a funny story. My son would self stim and scream at home. One day someone was at my house and they said "what is that noise?" I said "what noise?" They said it "sounds like a wounded animal." I said "I don't hear anything" and then I realized it was Carter. I had gotten so I totally zoned out the sounds and really had to pay attention to hear it.

  3. Can I just say that I think Hope is gorgeous? I totally get why she needs to surgery but I understand your heart about it. I have always thought she was beautiful, before she was even home with you guys!

  4. Candice PauloskiApril 8, 2015 at 4:27 PM

    just saw this article about a little girl with the same condition as Hope, be blessed today!

    1. I saw that! Wasn't it an incredible story? THANK YOU for sharing!

    2. I read that article too! Amazing!