Back at the hospital, and almost meeting Julian Edelman

I thought that winter was almost over, and that we had made it without a stay in the hospital.  I spoke too soon...here we are in the cardiology unit of Boston Childrens for an unexpected stay.

Evie started with a cough and runny nose, and just went downhill over the next few days. She started breathing rapidly and was crying frequently. We were told that if her oxygen saturation levels went down to 90%, that we should go to the hospital.  

I called Pediatrics and the nurse said to go to the ER, and offered to call me an ambulance. Evie was smiling and playing with her toys, so I figured driving in was just fine. I emailed the cardiologist and he agreed that we should go in.  

Here's Evie looking at her new accessory, aka hospital wristband. 


No wait in the ER! Woot!

I was affirmed by the cardiology fellow for bringing her in.  They saw her oxygen saturation levels dip a bit while we were there, and that won her a ticket to stay overnight for monitoring. 

Evie enjoyed the ride in Mommy's lap when they had me sit in the rolling hospital bed to be transported to the cardiology unit. She had a big smile on her face and waved to everyone. 

Daddy spent the first night with her, and since she's still showing some moments of low oxygen sat levels, Mommy gets to stay tonight too.  Good thing we are veterans at this and it's more an annoyance than a big deal. 


The big difference this time is that we have a squirmy toddler on our hands. She is angry that she has an oxygen cannula up her nose, and that mommy and daddy aren't taking her where she wants to go. In fact, she's not allowed to leave her hospital room.  Boo bronchiolitis!! 

I could go on about the inconveniences of hospital life, but instead I will talk about the nice parts. 

1. Julian Edelman hands out pancakes to patients, apparently. The nurse told us AFTER he was gone past our room. I am still a bit peeved on missing out on a family picture with the Patriots player. 

2.  A music therapist. The neurology department has music therapists that go to the rooms and play music.  The guy who came in had the most soothing voice. Unfortunately, his rendition of Itsy Bitsy Spider was so slow, that Evie didn't feel like clapping for him at the end. But she was definitely more relaxed, and I was too. 

3. National pancake day celebration in the cafeteria!  For 2 bucks, I got 3 pancakes with all the toppings I could want.  They totally revived this tired mommy. 

4. A play mat (aka a bunch of blankets) in the floor with toys from Child Life. Evie was so sick of her hospital bed, so it was nice to give her some space to move around. With tubes everywhere, it's hard, but she likes it better for sure. 

5. All you can drink ginger ale.  I'm having an upset stomach, maybe from stress, but luckily there is all the ginger ale and apple juice that I can drink! 

6. A 14 foot extension to the oxygen tube.  I was annoyed that we couldn't take Evie more than a foot from her bed, and I said so.  The nurse then brought some extensions, and that made so much of a difference in moving around the room with Evie's oxygen tube. I should have asked sooner!

7. Lots of books. Child Life has lots of books for Evie, so it's nice having some different ones to read. 

8. All the baby food we need. Evie has a smorgasbord of flavors to choose from!  She is just getting her appetite back, so she will be able to take advantage of this a bit more soon. Today, sweet potato was the winner. 

9. Endless supply of oximeter sensors. Evie loves pulling off the little sensor that wraps around her toe. We had to ask for extra last year because she went through them so quickly. Luckily we have an endless supply here!

10. Awesome doctors. We are in the best Cardiology department in the country!  

For the praying type, Evie's oxygen levels drift down when she sleeps. We are on the lowest amount of oxygen, but she still needs it. Please pray that she won't need the supplemental oxygen and that we have physical energy amidst lack of sleep! 

Thanks to all of Evie's awesome fans! 





Evie's heart on Valentine's Day

Happy Valentine's Day, everybody! My heart is doing so well, that I have graduated from cardiology follow ups every 3 months to every 6 months!  Mommy and daddy are so ecstatic!


This photo is one of the photos from my photo shoot with Nicole Starr. She is our hero because she donated her time and talents to so many families with Down Syndrome. 

I would also like to wish everyone a happy Lunar New Year!  


Today, I am remembering all my buddies with Down Syndrome who tend to have heart problems and need to stay in the hospital for surgery.  I am blessed with a stronger heart now, which makes it an extra special Valentine's Day!

Lots of love, 
Evie

Contemplation of socks

Evie is a Houdini at pulling off her socks.  This makes me proud and annoyed at the same time.  I am so glad that she is super flexible and can reach her socks easily, even bringing them up to her nose.  But having to do a "sock check" whenever we are out somewhere is necessary, and my aging back does not like doing squats to pick up the sock while I'm holding Evie.


And now begins my search for the perfect slipper socks, and then the perfect walker shoes.

All the walker shoes that people so generously gave to us are too big still for Evie.  I evidently passed my genes of small feet on to her.  Side note: someone in middle school once asked me if my feet were bound in China.   I have tons of sarcastic remarks now to this, but all I said was a scathing "No." At this point, if someone asked me that, I would ask them if my feet looked like they were broken and then unnaturally curled into a ball.  But that is for another day.  For now, I am glad that Evie has cute feet, and I get to buy her cute shoes and save the gifts for later.

In Amazon's generous bounty of goods, I found 2 great shoe brands.  Evie is not walking yet, so she doesn't need huge treads on her shoes.  But she does need Velcro and/or long socks that she can't pull off completely.  Hence the victorious finds of 2 kinds of products:

Pink cowboy "boots"! 


  These slipper shoes really are clever. They are comfy, warm, and Evie has not been able to pull them off yet.  We are big fans.


For Evie's next foray into the snow, I got her some little pink boots with fur inside. They come in different colors. The reason these are so great is because they have velcro to tighten them so she can't pull them off as easily (although  not 100% Evie proof in recent testing), and they are warm enough to step in the snow a bit.  Can't wait to use them! (But then again, I could do without more snow...)


This was quite a frivolous post.  Sorry if you were looking for something deep about Down Syndrome.  I will say that I think Evie might not be the only one with Down Syndrome who has really small feet for someone her age.  Many kids with DS are smaller in stature, and can have shorter limbs.  Evie actually has pretty long limbs though, and Daddy secretly hopes that she will like playing and watching basketball.  She is also rather tall, and measured in at 29 1/2 inches today at the hospital. Here's to our pink cowboy boot-wearing basketball player!

Stay warm, everybody!


Starting traditions

Now that we have Evie, I want to have some new traditions for her to look forward to at Christmas time.

One of the things I want to start is to give  Evie an ornament each year.  This ornament would have some meaning for her.  I got this idea from our friend Momo's mommy--she took all of her ornaments from childhood that she received and started her own tree when she had her own family. And now Momo gets his own ornaments each year!

This year, I made a Shutterfly ornament to start us off. It has some of my favorite pictures on each side.



Another tradition I want to start is a yearly digital photo album.  My dad has painstakingly kept a photo album of our family starting from when he and my mom were married.  That is too hard for me to keep up with, but I think I can do a digital photo album each year.  I want Evie to be able to look back and see the pictures of when she was little.

A favorite tradition that Erick and I already started was that every year we help out at our church's Christmas Choir concert.  We are biased, but we think it's the best concert ever.  Last year, Evie sat in Mommy's tummy and enjoyed the music.  This year, Evie stood at the back with us and bopped around to the music with us.  It was so much fun!

Like for Halloween, Evie has 3 Christmas outfits.  Here is one of them!

Wishing everyone a wonderful Advent season!


Becoming a Toddler, Evie-style.

Hi everybody!  Mommy said I could blog about what it's like to go from being Baby Evie to Toddler Evie.  It's awesome.  I can now tell everyone when I am so happy to see them by clapping my hands over and over again, or I can tell them that I don't feel like talking by whirling around quickly and putting my face in Mommy's neck.   I can also reach things on the table when people aren't looking. 

Recently, I've been working on a few things that I'd like to share with you.  

I am working on picking things up and putting them down. I'm awesome at picking up big objects, but don't like to let go of them when I'm supposed to.  I let go of things in the car so that they fall out when the door opens, or out of my high chair so that Mommy has to pick it up.  
Working on taking caps out of the container and putting them in. 
That tube that you see in the picture above is actually an oximeter cable, which is to measure my oxygen saturation and heart rate. Mommy and Daddy were checking because I am being weaned off my sildenafil medicine for my pulmonary hypertension.  My Oxygen sats were 100%!  Woohoo!  It feels great not to be as tired as I used to be anymore.

I'm also working on understanding this thing called winter. Mommy keeps bundling me in all sorts of coats.   I actually really like wearing hats.  I think they are funny.


While Mommy likes to limit my screen time, I have very much become a fan of my Wheels on the Bus app.  I get to play this for a few minutes each day, and I'm learning how to make the horn on the bus go beep beep beep.  Mommy would like to share that she figured out how to make it so that I don't close the app whenever I touch the screen.  It's called "Guided Access" as a setting on the iPad, and it's awesome because I can sit on the screen and it will still sing Wheels on the Bus for me. 


I am working on crawling.  I don't really want to. People keep making me bend my knees.  I just like to lay there with my hands holding me up.  I have a physical therapist, an occupational therapist, and a developmental therapist who all try to make me bend my knees.  I need to learn the sign language motion for "leave me alone."  They're all nice ladies. I just want to bend my knees on my terms. 


Daddy and Mommy take me out to Wegmans for grocery shopping every week with Grandma, because she loves Wegmans.  So do a lot of other people.  Daddy is teaching me about vegetables. I don't like to take naps when we go out now, because there are so many fun things to look at!
 Mommy says that when I was born, there was a lot of snow. Something about a snowpocalypse in 2014.  This year Mommy put me in a snowsuit and realized that I didn't own boots.  So I wore leg warmer socks on top of my regular socks and we went out to look at the white stuff called snow. I didn't play in it--I don't like it when Mommy puts me down yet.  Maybe another time.  Mommy has ordered boots for me, so I have a feeling she's going to make me touch the white stuff.



I'm still working on my eating.   I'm eating about 5-20 bites of yogurt and purees, depending on my mood.  I only like to drink milk out of Grandma's big girl cup and not my own cup.

In baby playgroup, I've been having a lot of fun.  I don't cry anymore because I think everything is very interesting.When the bus comes to get me, I like to look out the window while we drive. The other kids bring me toys, and I like to eat my snack while they eat theirs.  Oh man--when Ms. Jessica brings out the big purple ball and bounces each kid on top of it while everyone sings...that's my thing, baby. I love that.

So...being 13 months old is going well so far!  I hope that you all stay warm in the white stuff!

Love,
Evie

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