Sonnet is home! Thank you for your help!

Sonnet is HOME!  We left the hospital shortly before noon on Saturday.  Sonnet was soooooo happy and excited to get in her stroller!  She laughed, and giggled, and waved, and said, "Bye bye!" to everyone she saw all the way out of the hospital!  And she was so excited she had the first (very short and mild) seizure we'd seen for nearly forty-eight hours as I went to put her in the van.   We haven't seen any seizure activity since.

A glimpse of our way out....

With the cessation of the seizures I was able to feed, feed, feed her, and she regained all of the weight she had lost.  The change in my girl is astounding!  For the first time since she has been with us she is actually WELL fed and well hydrated and seizure free.  She was already vibrant and bubbly, but wow!  She is moving FAST now and into everything.  I believe our life is about to get much more interesting.

As I reflect back over the past week as a family truly in crisis, and see where entire days just seemed to vanish as the doctors attempted to bring Sonnet back from (and I quote one of the neurologists) her "scary place," I am tremendously grateful to family members, friends, and the medical staff who worked HARD and tirelessly to bring our girl back to us. 

I am keenly aware that our decision to adopt medically needy children from hard places affects everyone in our circle of influence.  Our adult kids and grandkids have sacrificed some of their share of time and attention from us (mostly without complaint) and neither they or our friends signed up to support a family in crisis.  I didn't EXPECT the help, but I am so, so thankful for it.

Many kindhearted people contacted me to ask, "Can I do anything for you?" and I appreciated that so much.  But the funny thing is, when someone is truly in a crisis you can't even THINK of what you need.  "Ideas of how to help someone in crisis" may be a future blog post, who knows?  But I want to thank you for jumping in and helping as your instincts told you.  People helped in so many creative ways.  Put together they were just what we needed to help us get through this. 

I was a HOT MESS and am speaking truth when I tell you I simply wasn't able to worry about my kids at home.  My hours were consumed with getting Little Miss the help she needed, assisting or comforting during test after test after test, researching possible solutions on my own, and mundane things like figuring out what to eat to stay alive.  Nope, not being dramatic.

Two of my adult daughters and a neighbor jumped in.  I didn't need to be concerned about the five kids at home.  They were receiving loving care, and while not happy that I was gone, they aren't the bundle of nerves I expected I might come home to. (Abigail and Jen in particular have anxiety issues.)  Tikvah was even able to get in on a roller skating party that I am sure did her a world of good.  She loves her younger siblings and expresses that often.  But it is HARD to live with siblings who are needy.  I'm so thankful she got to do something FUN.

Friends jumped in to help those caring for the kids at home.  Meals were delivered every night and are continuing through these first couple of days at home.  The primary care giver while I was away traveled a couple hundred of miles with her own three small children (she is expecting too!) and I know it was such a relief to her to not have to worry about what to feed the mob at night.  A huge thank you to those who took it upon yourselves to set up the meal train and bring meals.  It was so appreciated!

A few days into our stay Sonnet was in desperate need of a good bath.  She had gone through two sessions of having leads glued into her hair and was just a stinky baby!  I was shocked to find that the children's hospital had nothing to offer for bathing someone with her needs.  Our request for a bath chair resulted in a regular plastic chair with no supports or restraints.  Um.... guys she can't really sit up usually anyway, and is having seizures frequently!

I put out a call on Facebook for anyone local who could go to our house to pick up our Rifton Blue Wave chair so I could bathe her safely. Just moments later as I was making arrangements with a friend for the pick up, my daughter in charge at home sent me a text that the chair had ALREADY been picked up by someone else.  That fast.  Two different people were ready to drop everything and make an hour round trip to drop this off for her!  We used the chair a couple of times over the next days and it made our stay so much more pleasant.  What a huge blessing to have it brought to us, and so quickly.

While we weren't allowed to have people up to our floor at the hospital, friends found creative ways to help.  One out-of-state friend ordered a soft little doggy toy and balloons for Sonnet, and snacks for me from the gift shop and had them sent up.  Once Sonnet was feeling better she spent HOURS playing with those balloons, and is still snuggling with the stuffed dog at home -perfect!

Other friends sent up snacks, (who knew just figuring out what to eat was so hard?) and things like lip balm and lotions to make my creature comforts better. There was even ginger ball candy that was perfect for soothing my upset, nervous Mama tummy.  A couple of times when I was finding myself especially longing for a cup of good, strong coffee one would POOF appear via the concierge, having been dropped off by angels in the form of especially thoughtful friends.

Others sent notes of encouragement, posted their concern on my Facebook page, or sent text messages. It was so helpful to know that others genuinely care for Sonnet and we aren't in this alone.

And then there is the whole village of people who were praying for Sonnet.  From Facebook friends to other adoptive parents in the China groups, to in-real-life friends and their churches, to our pastors and the list goes on.  This was perhaps the biggest blessing to know people were praying.  I sincerely believe we witnessed a miracle this week.  We had a desperately sick little girl on Wednesday, and on Thursday she was on her way back to us.

Health wise, I believe she is at the best place she has ever been, but she is a sensory MESS.  She had so many glues, tapes, new soaps, etc. and she is just digging up her skin.  Please pray for some relief for her.

People tell me I'm so brave, but I'll be honest.  I'm not.  I am somewhat of a coward really, and as human as anyone else.  I don't enjoy a medical crisis, and DO enjoy my own bed.  But the bottom line is that I love Sonnet FIERCELY and just do what has to be done to see that her life is as good as we can make it.  Sometimes with a medically needy child that means taking on the medical establishment to help them see that she isn't "typical" and needs them to look outside the usual medicines.  The typical ones didn't work for her and she didn't tolerate them either.

As we were going through the discharge process I thanked the doctors for working so hard to help Sonnet, and for putting up with me cause I knew it wasn't easy at times.  One of them replied that I was a "great advocate for Sonnet."  I told her that was a very polite way of putting it.  She assured me that she was serious and not being facetious.  And that is what it comes down to as parents, isn't it?  We simply do what needs to be done for our kids.  Thank you my friends, for helping me to do that this past week.

We're still here!

My apologies (for the lack of posts) to those who continue to hold our family up in prayer and are interested in how we are doing.  I've been pretty much in "survival mode" for the past month.  Our Little Miss came to us with multiple medical needs, and it has proven difficult to sort them all out and get her the help she needs.

Within the first couple of weeks Sonnet saw her pediatrician and her doctor at the International Adoption Clinic which triggered other appointments with specialists. She also began Speech, Occupational and Physical therapies which she goes to each week.  They are attempting to help us obtain an appropriate feeding chair and also a stander with wheels so she can have some independent movement about the house.

Sonnet had dental work done under general anesthesia at a surgery center because of the extensive amount of work she needed.  She had seven teeth pulled, six caps and a few fillings.  Poor little dear is having to learn how to chew all over again since she somehow USED the little black nubs while eating.

Because our much loved pediatric dentist is in another state, Sonnet and I "got" to spend a couple of nights in a hotel near the surgical center.  It really wasn't fun, and I'm so glad to have that particular need behind us.

Another biggie was trying to get a diagnosis of the seizures she has been having.  A regular EEG and a brain MRI didn't give us any answers so we ended up with an in hospital stay hooked up to wires and under constant video.

This obviously wasn't something Sonnet enjoyed either!  Following that L-O-N-G test she was put on a medicine to control the seizures, but it ended up actually CAUSING seizures.  We are now in the process of weaning her off that medication and beginning a different one.

And in just a couple of days she will see the Cerebral Palsy specialist.  Whew!

Much of the last couple of weeks have been spent holding, rocking, and wearing our previously happy child who has been replaced with one who looks like the photo above much of the time.  Yes, I do believe it is caused by the medication and we are seeing some improvement with the weaning off of it.  I do miss my happy, smiling girl more than I can say though.   Please continue to keep her in your prayers.