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.

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!

Through the Eyes of Hope - book review

It has been quite awhile since I've reviewed a book on the blog.  Rest assured I'm still reading, but life with the Little Miss hasn't allowed much blog writing time.  However, I just reviewed a book with NetGalley that is so good and so relevant to us mamas of special needs that I wanted to be sure to bring it to your attention.

Through the Eyes of Hope is the true account of the challenges faced by the Buchanan family when their son, Christopher, was born with a rare medical condition.  As a mom who all too often must advocate (ok perhaps fight is a better word) for the best treatment for my own children,  I identified with this story so much.  The hurtful comments, the judgement, the feelings of inadequacy.  BUT, Lacey Buchanan also gives us the other side of that coin that we moms must eventually get to.  The position of confidence in our role for the well being of our beloved child.

It is a story of faith, but not the smooshy kind.  This faith bears up under the raw emotions, the exhaustion, and the daily grind that comes with living The Hard.  I believe you will find yourself crying with her and cheering on the victories.  You'll also fall head over heals in love with Christopher.  Read. It.

Pre-release review.  Book is released in January.


Order from Amazon  ***HERE

** I was given a complimentary digital copy of this book in exchange for an honest review.

*** Clicking and ordering through my Amazon link donates a small percentage of your purchase to Sonnet's sensory room fund.

Happy Birthday, Everly Mei

Did you know.... The number four is omitted in some Chinese buildings. Number 4 (四; accounting 肆; pinyin sì) is considered an unlucky number in Chinese because it is nearly homophonous to the word "death" (死 pinyin sǐ).

I am the warrior for the Hnilo family and today is their sweet daughters FOURTH birthday! Let's show her what a great number FOUR can be! Will you donate a dollar for each year she has been waiting for her family? Just four bucks. You won't miss it much, but it will be a great encouragement to her family as they work to expedite her adoption. A little bit can go a long way if we all work together.

 You can donate (tax deductible) here. http://reecesrainbow.org/112798/sponsorhnilo  or in the donate box on the right side border of this page. Thanks friends, and Happy Birthday, Everly Mei!

New page on the blog

You may have noticed a NEW PAGE that appeared on the blog about the time of the "remodel."  Instead of advocating for a specific child this Christmas season (I was Sonnet's aka Susy's advocate last year) I am a "warrior" for a special family working hard to get their daughter home via a medical expedite.  The whole scenario makes me think of my experience with our sweet Sonnet.

You may also notice their donation box in the right side border of the blog.  All donations to them through this link with Reece's Rainbow are tax deductible.

You'll find more details about their little Everly Mei and news of their first fundraiser that actually ENDS on Sunday, October 16 at 8pm EST, so hurry!

Family Warrior for the Hnilo Family

Blog revisions - remodeling!

Often adoptive parents ask for information about hotels or attractions in specific provinces.  Some are just curious what the office looks like where they will meet their child or some other detail.  Realizing that our four trips are scattered all over the blog I am attempting to gather the travel information about each adoption and post it along with the child's adoption timeline - yet another detail many adoptive parents study. 

During this process you will see the tabs above change from merely listing the name of the child and TIMELINE to the name, year, and province.  Hang in there while I do some remodeling.  I hope this will be helpful to those still in process.

Sonnet has a Secret!

You can't tell just by looking at her...

but Sonnet has a secret! 

We've discovered SpecialWundies!  I've never done a "commercial" on the blog before, but here it is.  And my disclaimer is that I have received NO COMPENSATION from the company in return for it.  This is my "I purchased the product and LOVED IT" commercial.

These are onesies for the older child!

I am so crazy about these things!

They were created by parents of a special needs child.  In their case their son was fed by a G-Tube and needed a onesie to help prevent him from pulling out his tube, and also to stand up to the heavy use by an older child with therapies and medical procedures.  All they could find to fit an older child fell apart after a few uses, was always out of stock when they needed to reorder, or were too expensive.  They decided they would have to manufacture what they needed themselves, and I'm so glad they did!  It took them two years of field testing, but SpecialWundies are available to us all now.

These are so perfect for Sonnet!  Like many children with cerebral palsy, she does an army crawl.  Her clothes just don't stand a chance at staying put.  Can we say "BRRRRRR, COLD TUMMY" when she reaches the ceramic tile floor?

  And like many children with the history of an orphanage background, she has sensory issues.  The onesie keeps her fingers out of her diaper!  Yessssssss!

SpecialWundies are made from a very soft 100% cotton, and seem to be made to last.  We don't ever want to be without one, and sometimes we go through more than one a day.  So we've orderedthree times now.  We currently have eight of these so there is always a clean one available!  They start in a size 2T and go all the way up to a size 16 (that is up to 120 pounds!)


You can find out more about the Wundies and the company's satisfaction guarantee on THEIR WEBSITE.    Sonnet says to HURRY!