Wednesday, November 30, 2016

Time to VOTE!


As you know, I'm the "warrior" for the Hnilo family this year. They are adopting a little girl they are naming Everly.  Her story is similar to Sonnet's except even sadder.  When her previous prospective adoptive family arrived earlier this year they made the decision that her needs were just too great and returned her to her orphanage.  :(  The Hnilos are stepping out to get her home as quickly as possible.  They got the decision from USCIS (immigrations) that they agree her health needs are great and are expediting the adoption.  I'm committed to encourage them, pray for them, and raise funds as I'm able.  Here is a fun idea that you can all get involved in.

For months the adult sisters have been saying that Isaac should get to determine how HE wants his hair. We parents aren't so sure. He seems stuck on this anime style as seen in the drawing he created above! So we are putting it to a vote.

What do YOU think? Each dollar you contribute to the Hnilo family's FSP will "buy" you a vote. Simply contribute any dollar amount to their tax deductible account at http://reecesrainbow.org/112798/sponsorhnilo and then report back to this post to cast your ballot by commenting.

Isaac is on board and will comply with the vote. If he and the sisters "win" he gets to grow his hair long enough to style similar to his drawing and keep it that way for one month. If the parents win, he sticks to the status quo. We hope you will have fun with this fundraiser for the Hnilo family!

Remember each dollar is a vote, and every vote counts.   To participate donate by clicking on the link above or donate in the sidebar to Every's adoption.

Thursday, November 24, 2016

Sonnet gets SMOs

Sonnet got her first pair of SMOs (Supra-Malleolar Orthosis) yesterday.  They help to give her support while standing.


She was super impressed as you can see. She would rather throw them than wear them!





Happy Thanksgiving!

We are a very thankful people this year, for sure!  We celebrated with the big meal with Ethan's mom, our adult "kids" and grandkids last weekend, so today was a relaxed day at home with no big expectations.  In fact, Tikvah had requested our Thanksgiving meal be a la Charlie Brown style with popcorn, jelly beans and toast!





 

One fun thing we did today was to let Sonnet try out her Upsee.  We have had this for a couple of months, but due to the amount of seizures she had been having, we hadn't been able to let her try it out.  In case you don't know what this is, I'll explain.  First, the adult puts on the belt, then the child puts on a vest like harness.



The child's harness is attached to the adult's support belt.


And then both put on the sandals.  There is a small one and a large one hooked together for each side.



Sinch up the straps...


And you're ready to walk!



I was able to get a short video of Sonnet walking with her Upsee for the first time, but Blogger says the file is too large to upload.  However if you would like to see it, you can watch it on YouTube here https://youtu.be/k8aFBpe0Pr8

We hope you had a wonderful Thanksgiving also! 



Friday, November 18, 2016

Happy Birthday to Sonnet!

The doctors talked as if we might still be in the hospital on Sonnet's birthday.  So thankful to have her home and healthy again!  Happy Birthday sweet Sonnet!





Sunday, November 13, 2016

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....

video


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.




Friday, November 11, 2016

Sonnet is in the hospital

 

  It has been a very long and scary week.  You may remember that the plan with the neurologist was to stop the seizure medicines hoping Sonnet would return to her baseline of just a seizure or two a few days a week.  This was due to the tremendous amount of side effects the medicines caused.  It was setting her back in her weight and in gaining strength, and didn't seem to control the seizures anyway.  Unfortunately the plan didn't go as expected. Her seizures began increasing last week so I gave her one of her emergency medicines.  That seemed to trigger even MORE seizures, to the point that we were seeing 40 - 50 a day over the weekend.

On Monday, under the advisement of the nurse practitioner at the neurology office (our doctor was out of the country) I took Sonnet to the emergency department.  We spent several hours there before being transferred about midnight via ambulance to the main campus of the hospital downtown.  They tried two different medicines, but the seizures still continued every five to twenty minutes around the clock.  Then things got even worse on Wednesday morning when Sonnet presented with tachycardia (fast heart rate) and some respiratory distress.  What followed was a day of test after test after test to determine if she had developed heart issues or an infection somewhere. (all tests eventually came back normal.)



Two days of not eating and drug induced EXTREME sleepiness left us really concerned.  They put her on special watch and even mentioned ICU in our conversations.  YIKES.  A feeding tube was also recommended, but they agreed to wait for one more day to see if she would improve.


Oh what a difference a day makes!  After refusing to let them give either of the two new seizure meds again (these were the 4th and 5th different ones she has been given) and  begging them to find something better for her, they tried a medicine that isn't largely prescribed for children it seems, but it WORKS FOR SONNET!  She is interested in life again and we avoided the feeding tube.  She is eating like a little piggy!  Here she is enjoying a stuffed dog and balloons that was sent up by one of her former advocates from WACAP.




The rascal made the decision for the doctors this morning and pulled out her own IV.  The nurse WANTED to replace it but agreed to wait the hour until the doctors made their rounds.  The dietician wanted it put back, but the doctors thought we ought to give her a chance to eat and drink on her own.  She is a champ.  They issue the challenge and she conquers it!  Example - Wednesday calorie count was 86.  The dietician said she would have to eat an impossible (I thought) amount by lunchtime on Thursday to avoid the tube.  Her calorie count for yesterday was nearly 1200!!!!!!

Last night we had low oxygen saturation and I awoke to a room full of people - that is freaky - giving her oxygen. They said perhaps it was just her sleeping position.  And she has a rash on her face today but three different doctors have been in to look at it. They say it just appears to be a skin irritation  and not a drug reaction, thank goodness!  The best news though is she is happy, smiling, interacting with people including waving and saying, "hi" and "Bye bye" and blowing kisses, AND she has been seizure free for over 29 hours now! 


Sonnet's wonderful neurologist came to see us at the hospital today, and it seems we may have quite a bit of work to do yet to figure out the puzzle of her health issues.  I'm thankful that we have doctors who are interested in helping us sort out the pieces.  Please keep Sonnet in your prayers as you think of her.   She is vibrant and joyous even though she has so many reasons to be anything but.  We are fighting hard to keep her health needs from stealing her joy.

Sunday, October 30, 2016

We loved our new neurologist!

I really LOVED our new neurologist AND the resident who is working with him. He says with her history he wouldn't have chosen that 2nd medication as an option.  We are so glad to see it GONE!

I was really UNHAPPY to discover through the course of these meds she has lost HALF the weight she's gained since she has been home. :(

  The doctor showed me the EEG reads from when Sonnet did the overnight monitoring in the hospital. Apparently when the report was written up it makes Sonnet's seizures look more impressive than they actually are. When one looks at the EEG readings they weren't all that significant according to the neurologist. The seizures she has on the medicines have been more frequent and way more severe than what she was having before. He told me that some kids just don't tolerate anti seizure medications.

So what to do? We now have two different types of rescue medicines. One to use if she has a seizure that lasts more than five minutes, and one to use on an "as needed" basis if she has a fever or illness that seems to spike way more seizures than usual. Our hope is that she will return to her pre-medication level of having just a few mild seizures a day.

Provided that goes as expected we are to concentrate on her therapies and her gaining back the weight, taking a break from any regular meds for six months. We'll address it then and see if we want to try a ketogenic diet or some other course of treatment at that time.

Sonnet's signature smile has been a rare sight when on the medicine.  We're so glad to see it return!

She still has some residual meds in her, but we're seeing less seizures and more of the Sassy Sonnet returning each day. I've missed her so much. Thank you for your continued prayers!