Feisty is my middle name.

Along with growing taller, Evie is growing in feistiness.  She has definite opinions about everything from socks to books to how she should eat.  I didn't read on any of the Down Syndrome websites that there seems to be a theme of stubbornness in our kids (although every kid is still different!).  But as I've learned from other families, stubbornness is a very real thing.  First, she has the genes for stubbornness from both sides of the family.  Then she seems to have the extra copy of special stubbornness.   But the thing is, she's a cute stubborn.  She sticks out her lower lip and crosses her arms as she emits a "Gaaaah!"  Which just makes me laugh at her. Most of the time.

Today I am not laughing.  We decided last night to wean her off the iPad while she eats.  I was inspired by the other parents on the tube-weaning Facebook group I joined, and while I was warned that it would be tough, it is still hard to start the journey.  The first 2 meals were surprisingly fine.  She ate 3 out of her usual 4 ounces.  My voice was hoarse after singing every song I could think of, but I was pleased.  Towards the end, I had to use the audio on my iPhone and let her listen to some music, because I just couldn't sing anymore.  But it still worked.  

Enter Meal #3 sans iPad.  I want to grab her and stuff the spoon in her mouth, but I know that would be horribly counterproductive in so many ways.  So we are taking a break.  For the 3rd time.  If we were in a cowboy movie, we would be having a standoff, and Evie would be calmly reading a book while pointing her pistol at me, while I look intensely at her and wave a spoon at her face.   She would at times yell "Gahhh" and then go back to her book.  We've gone out and enjoyed the nice weather, gotten the mail, and tried again.  Gahhh! Nope. 

The feeding therapist says to be consistent and mean what I say.  She offered to take the iPad home and give it back to me when she's done with her maternity leave in September.  She was serious. I guess she knows how hard this is going to be.  But we got gushing approval today for making that decision.  

If it were just the iPad that was a problem, I would throw all caution to the wind.  But the other side of it is that there's a GI doctor and a Nutritionist sitting in rocking chairs in the cowboy movie, watching the standoff, and telling me that she'd better not lose weight.  "Stay on the growth curve," they drawl, as the tumbleweed rolls by.  A black crow caws, mocking me.  I stand my ground, throwing them a dirty look.  And then I worry that she is losing weight when we worked so hard to get back on the growth curve.  "Hey," I say, while she is only in the 3rd percentile on the typical growth chart, let me remind you that she is in the 50th percentile on the Down Syndrome chart. I'm not starving my kid!  They stop rocking as they digest, and then they say their same mantra, "Just make sure she doesn't lose weight."  

So we're weaning off the iPad and weaning off overnight formula feeds with her feeding tube at the same time.  Stroke of genius or suckers for punishment?  Time will tell.  Pray for us. Evie's just fine--it's her parents who may go insane for the next few weeks. 


Update:  1 week in, and the score is Evie: 1, Parents: 0.  She lasted a week with eating 1/3 less than usual, and we decided that weight loss at this point was counterproductive.  So we are starting with no iPad and then using the audio, and then using the screen if we need to.  With an average of 1.5 oz OFF the iPad, we have recovered now to 4.5 oz ON the iPad.  The difference is huge.  For now, we will concentrate on beefing her up and will try again once we get her off nighttime feeding tube formula.  

My foray into the school fortress, and the winners of the Lularoe giveaway!

I unexpectedly had some time during the day after Evie's doctor appointment last week, and decided to just bite the bullet and register her in the public school system for preschool (I know! I'm not ready yet either).

I had no idea.  I had no idea the level of bureaucracy involved for preschool.   Just to get in the building was a challenge.  I had to walk all the way around to find the ONE set of doors I could enter (totally smart to keep our children safe), and then buzz the doorbell to be let in by the security guard.


Then I had to wait for the administrators to finish chatting with each other before I could go in the office for registration.  Then the lady asked me if I had the birth certificate, utility bills, immunizations, physical, and license.  I proudly and confidently said yes.  Then she asked me if I had filled out the registration packet, and I felt deflated.  She handed me a 15 page packet and told me to tell her when she was ready.  I stood there and filled out the packet, frantically searching my phone for phone numbers and other info.  I stated that Evie's only language was English, remembering how my little brother had to take the TOEFL because my mom wrote on the form that his first language was Mandarin.  I had to write on a blank piece of paper that I was officially requesting a special education evaluation for Evie.  The lady informed me that I would have to contact the evaluation office.  I smiled in victory, saying that our service coordinator in Early Intervention had already sent everything over.  She looked surprised that I had dodged an extra step in her bureaucratic game, and acknowledged a point for me with a look of surprise.  I finally finished the paperwork, and the lady buzzed around, doing her thing, and then I was sent to the school nurse to show her the immunizations and copy of the physical (thank you, Boston Childrens for having everything available to print on the portal!).

Walking through the high school to the school nurse's office felt surreal.  This 70's-ish building felt like something off a movie set.  I got lost, asked someone for directions, found my way across a skybridge, and then found the nurse's office.  The nurse reviewed the papers, and informed me that I was missing the results of a lead test and a TB risk assessment test.  I was given a business card with a fax number on it, and sent on my way.

I almost just went out the closest exit door.  But then I realized that maybe this would trigger some kind of alarm.  God forbid that I caused any trouble even before my child had entered the school system.

This probably seems like nothing to the veteran moms who have done this for their kids.  But for a first-timer, it is the first step of a big adventure into the unknown.  I am signing Evie up for a huge milestone full of unknowns.  Will she walk by December?  Will she need the nurse to give her milk through her feeding tube?  Will she have friends?  And then there's the question of whether she will get the support she needs--occupational therapy, physical therapy, speech and language therapy, andvision (mobility) assistance, while being able to be included with her peers.  It's a huge undertaking to get a child into school!  I am thankful for the many parents who have gone before us, especially in the special ed arena, so that I can learn from their experiences.

In the meantime, I am just going to enjoy Evie before she becomes a little schoolgirl!  My baby is growing up!

And now, to announce the winners of the Lularoe giveaway!
Grand Prize: Kim W.
2nd Prize: Kristy L.
3rd Prize: Diana L.
I will e-mail you with more details about how to get your prizes!  A huge thank you to Lularoe DressWell GiveWell for her generosity!


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