Evie's Surgery, and Asian Ear Wax

I want to talk about Asian ear wax, but should first say that Evie is doing well!  It felt wonderful to have people checking in on us on text and Facebook. 

The day started at 4:45 am today, so if this post seems delirious, it's because I am delirious. 

For the benefit of someone who might go through this one day at Boston Childrens, first we went to the Surgical Unit on the 3rd floor of the main building, and checked in.  We waited in the pre-surgery waiting room for a bit, where Evie waved at everyone.  Then we went into the pre-op area, where she kept smiling and laughing, thinking we were having great fun.  We met with each of the 3 surgeons and the anesthesiologist to discuss the procedure and sign consent forms. Erick ended up taking her into the OR (he had to gown up) because she fought the medicine to make her sleepy with every ounce of her toddler-ness (that is a word, once you have a toddler).

Evie first had ear tubes put in, which is called a myringotomy. The tiny tubes drain fluid from inside the ear.  This only takes 4 minutes, so they didn't let us go downstairs for breakfast until we heard from the ENT surgeon. He came out and told us that some fluid had drained from her ears, but they were pretty clear. 

She did have a lot of ear wax. Apparently she has Asian ear wax, which I didn't know was a thing. It's not like people go around talking about the texture of their ear wax. According to the ENT (who was Asian himself), Asians have dry and dense ear wax.  This has been confirmed by at least two Asian people today--one scientist and one cardiologist (go science!).  I am sure we are all better off for knowing this information somehow. 

The second procedure was the removal of extra tissue that had formed around her g-tube site. The surgeon explained that he did not think it was the right time to remove it, because skin had grown over it.  When she weans off the g tube for good, he will surgically close it and remove the tissue then.  

The third and fourth procedures were with Ophthalmology.  Dr. Dagi was awesome.  She aimed to reduce the amount that Evie's eyes were both turning in, and the left eye also was pulling up into the corner a bit, so she adjusted the muscle responsible for this as well.  It seems likely that she will need at least a second adjustment at some point, but this is common as kids grow. The lacrimal probe of her tear ducts showed everything to be clear, despite some anatomical differences in her tear pathways that cause her eyes to be watery.  We are hoping she will grow out of that on her own, but she will have watery eyes for awhile now. 

Surgical procedure to fix an eye turn is to shorten or re-attach the muscle further back (Source: improveeyesighthq.com)

The tear drainage system--Evie's was clear! (Source: https://pediatricimaging.wikispaces.com)

Brave little Evie was in surgery from 8:30 am to 12 pm and then went into recovery, where she proceeded to scream her disappointment in all of humankind for making her undergo such torture.  It's a tough thing to watch your child look so confused, scared and in pain.  We did all the parental things, such as rocking her, singing to her, and telling her her favorite stories, but what made her stop crying and open her eyes was Bob the Train on YouTube, singing Itsy Bitsy Spider.  It was like a switch turned off and the crying stopped instantly once she felt my phone in her hands. That's a tip for anyone with a toddler coming out of anesthesia if your kid won't stop screaming!  

We settled into the PACU for what we thought would be a long day.  I think now that they over prepare you.  Initially I was told that we should expect to stay the night.  Then we were told that it would be a very long day.  Then an hour after we saw Evie in recovery, we were told we could probably leave in 20 minutes.  We were very pleasantly surprised, and bundled up a very grouchy but lively Evie.  

Evie came home and immediately went to her books.  
Crazy hair, don't care

She is very cranky, but we are so happy to be home.  Home with crazy hair, bloody tears, and bloody nasal drip. Oh, and apparently toddlers at 2 and 3 years of age are likely to be hyperactive after anesthesia wears off.  Now comes lots of ear drops and eye drops for a few days and hopefully catching up on sleep for all of us.   But we are grateful she came through with flying colors! Thank you so much for your prayers and good wishes! We felt them!

Tomorrow is surgery day

Evie is going in for her third surgery of her life tomorrow.  I am both excited and dreading this. 

Excitement: As a result of this 4-in-1 surgery, Evie will hopefully see better, have less of an eye turn, hear better, improve her speech development, not have watery eyes as frequently, and have less extra tissue around her feeding tube site.

Dreading: That moment when I walk Evie into the OR with the nurses and watch them put her to sleep.  I know it's a bunch of minor procedures, but I don't know if I'll ever get used to this.  My friend said it gets better with each procedure. 

But hey--it's not open heart surgery!  We already did that with flying colors!

We are currently waiting for the day surgery nurse to call with the time for her surgery tomorrow.  After waiting for 4 months for the surgery, I have been terrified that somehow we would have to cancel the surgery date.  Evie got her winter cold over with last week, and then I hid the baby ibuprofen away so that we wouldn't accidentally give it to her within 10 days of the surgery date. I winced whenever she high-fived someone, telling myself not to be such a germophobe. Tonight she will be fasting, and we will zip into Boston because there will be no traffic at freaking early o'clock (~5:30 am).  Surgery should take in total about 5 hours, give or take how it is with 3 surgeons taking turns in helping Evie. 

Stay tuned for what it's like to have strabismus surgery, myringotomies, lacrimal dilation, and g-tube granulation removal! 

If you're the praying type, please pray that Evie will do so well after the procedures that she can go home with us the same day.  As much as I love Boston Childrens Hospital, I hate sleeping there, and so does Evie!

Evie and her doll Charlotte (note the eye turn, which we are hopefully saying goodbye to in 1 day!)

Evie has a lot to say

Evie had made some great strides in communicating with us.  She was at first only signing "please" for everything. Please I want you to pick me up, please I want to stop eating, and please open the box.  That got very confusing for us, and frustrating for Evie. 

Now Evie has refined her talking points and it's so much easier to know what she wants. Thank you, Rachel Coleman and Baby Signing Times!!  

Talking Point #1:  Open. This can either be signed for open a box so I can wreak havoc with its contents, or to denote that the doors on the bus open and close.

Talking point #2:  Music.  By running her hand down the other arm in a vague fashion, Evie tells us that she would like to watch music videos on her iPad. She does this more and more ferociously until we understand just how much she would like to listen to music. 

Talking point #3:  Yes.  This one's new! If we ask her a question and then ask her if she means Yes or No, she signs Yes with her fist.  This is handy when she keeps asking us to change the song, until she hesitates and we ask, Do you like this one? And she signs Yes emphatically. 

Talking point #4: Cold.  When it's time to put on her coat, we sign that it's cold, and then she does it. Cutest thing ever when she holds up her fists and pretends to shiver!

Talking point #5: Up. Evie loves to crawl over to us and ask us to pick her up. Highly effective when she makes puppy eyes. 

Talking point #6: Change.  Evie has now grasped the idea that if you don't like the song, you can change it. Or mommy can change it.  This sign becomes coupled with loud whining if she particularly does not like the song. There have been a couple times where I can't say I blame her--the songs were quite badly sung. 

Talking point #6: Love.  Sometimes Evie will suddenly lean over and kiss us.  We tell her we love her and do the sign for love by crossing our arms over ourselves.  It's amazing how many baby books have the word Love in them. Every time Evie hears the word, she makes the sign for Love.

Talking point #7:  Please.  This sign basically says everything else Evie could possibly want.  My next goals are "clean up" and "let mommy sleep." 

When is a good time to start Baby Signing Times?  I think every kid is different.  For Evie, she didn't really start paying attention until around 18 months, even though I tried to show it to her around 12 months.  But I have friends with kids with DS who also started watching around 6 months.   

A tip: sometimes the Signing Times company will make their digital version on sale for $5 and you can use their app to access whatever you buy.  Also, Evie prefers the Baby version as opposed to the regular version, but some kids are the opposite. 

I am glad that Rachel Coleman of Signing Times has won an Emmy for her programming.  She has really changed the world through helping kids to communicate, and that's not an exaggeration!  Evie has moved on from Baby Signing Times to Rachel and the Treeschoolers on Kids Youtube.  Rachel Coleman does not disappoint.

Some good first words are here: http://www.babysignlanguage.com/chart/ Our Speech-Language Pathologist made laminated flash cards that have pictures of her plastic food toys on one side and the sign language motions on the back.  I am a little intimidated by the sheer number of signs, but I will chip away at it!  One day, the sign for hot dog will be very handy.  I'm sure of it.

Signing 'Open' or sheer excitement? You decide!
Evie has surgery for her eye turn (strabismus), ear tubes (myringotomy), and to remove granulation tissue around her g-tube.  We are taking advantage of her being under anesthesia.  Go big or go home, right?  Thanks for your prayers that everything will go smoothly and that she won't have to stay the night for monitoring.

Evie's Brave New Ankle World

Evie's world has changed for the better.  She got SMO's, or AFO's. I've heard a lot of acronyms, and this was just another set of them until I realized what they really meant.  Supramellar orthotics or ankle-foot orthotics help a child to feel more stable so that they can learn to walk.  In Evie's case, her ankles were so weak that she would try to keep her legs stiff so that she didn't feel so unstable.  She was really afraid of falling over, and I don't blame her.  Meet the cutest little SMO's you've ever seen.  
When you go to the orthotics place (we went to NOPCO, which is a veritable empire of orthotics centers all across the region), they will take measurements of your child's foot with a measuring tape (hopefully not necessary to make a cast of their foot).  We waited a month for this appointment, so I would advise not waiting to make that appointment. You need a note of medical necessity from the doctor to got here.   

Evie did not like having her feet touched, and I had to hold her down.   But once we got the measurements, we got to pick the little design and the color of the velcro strap.  We waited 3 weeks, and then right before we went on a plane for Christmas vacation, we stopped by and picked up her SMO's. 

Then the fun part--shopping for shoes.  The following brands were recommended to us:
  • Stride Rite
  • Keene
  • New Balance

We didn't have much luck with Stride Rite, but I know many families who love them.  They just didn't have a great selection of high tops in the store that we went to, and were pricier than I expected.  The New Balance shoe that I ordered didn't come up as high as I wanted.  But the Keenes that we ordered on Amazon--I absolutely love them. 

Here's Evie wearing her Keene's.  When she started wearing her SMO's, her posture immediately changed for the better.  Her legs weren't flopping all over the place, and she was happier about standing when we made her practice.  Her crawling seems to be more confident too.
Someone crawled into the shower when Mommy wasn't looking!

When we first got the SMO's, we were given an instruction sheet about how to use them.  We were to build up wear time gradually, from 2 hours a day to 8 hours a day.  They then scheduled us for a 1 month follow up.   I then proceeded to buy more shoes after knowing that I had to go 2 sizes up to make them fit.   Evie has a nice repertoire of shoes now--classic (Keenes), silly (sparkly hippos), and trendy (black "Timberlands"). 

Evie honestly doesn't mind the SMO's.  I think she knows that they make her do less work when she uses her legs.  Here is a picture of her Chinese New Year outfit for 2017.  What you don't immediately know is that this was the very first picture I have of her standing unassisted.  She is leaning back against the chaise, but this is a huge improvement to standing and leaning forward onto a table in fear that she would fall over.  

I did wonder what would have happened if we had started SMO's sooner, but I believe that they were not brought up yet because her core was not strong enough.  Evie is a lot stronger in her core strength now, which makes a huge difference.

I will leave you with an image of Evie's very first piece of artwork that she brought home from playgroup.  I believe it is absolutely brilliant in every way, but maybe I am a little biased.

Jumping and Friendship Crafts with Evie

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about mak...