Evie's Last Step--A Tubie Journey

Hi friends,

Evie is 6 years old and has had a feeding tube all her life. Yesterday was the first day ever that she had no formula put through her g-tube.  

At 5 weeks old, we broke out of the NICU (finally!) after getting a g-tube placed in her stomach so that she could gain weight at home. We started from using an overnight feeding pump and feeds every 3 hours on Pediasure formula, and praying she wouldn't spit up or set off her pump alarm overnight.  

We then figured out how to space out the feeds to transition from a NICU schedule to a real-life schedule.  

We then dealt with feeding aversion, with Evie turning away or crying when offered the bottle. As she got older, she accepted a little food by mouth, but not enough to sustain her. 

I furiously searched Facebook groups and read articles, trying to figure out how to help her leave the tubie life.  

We switched from Pediasure to Real Food Blends to let her body get used to less milkshakes and more real food. This was a huge step for her.  I think that was the scariest step--completely changing what was going into her body.  But it was worth it--her development took off after that, both cognitively and physically. 

We switched to blending her food and using a syringe to push food in through her feeding tube, and said goodbye to the pump.  She had years of feeding therapy, making baby steps in this marathon. 

After years of feeding therapy, and patience for her own timeline, she has been eating 3 meals and 2 snacks a day by mouth, and just getting supplemental formula.  Everyone agrees she is close. 

With a heads up to our feeding team, and unwavering support from our feeding therapist, we reached out to the Growing Independent Eaters (GIE) team online, and they have helped us with a plan to take the final step.  They affirmed our feeling that Evie is SO close to eating, and just needs the last push so that she will recognize hunger cues and own her independent eating.  (Side note--before GIE started, the only other programs available were long hospital stays in other parts of the country, or a famous program in Germany for several weeks, for thousands and thousands of dollars.)

As soon as school let out for the holidays, we had agreed on a schedule and a plan. When Evie says "All Done," we won't push her, and will focus on the fun of eating and spending time with us at the table.  We will point out how yummy her apple chicken blend and her cranberry sauce is, and present options.  And when she insists she is done, we will steel ourselves to say ok, and trust that she will eat like any other young person and have peaks and valleys of appetite.  

We won't see any changes (except maybe crankiness?) for 7-10 days.  Step 1 is no formula and increase water intake, and offer food every 2-3 hours.  Step 2 is no tube at all, except to maintain hydration and reduce constipation.  

For you technical parents out there, her current tube schedule has been in total:

  • 5 oz Real Food blends
  • 1-2 ounces Pediasure Grow and Gain
  • 10 oz water
Our new Step 1 schedule is:
Morning Snack, then 60 ml water
Afternoon snack, then 60 ml water
Dinner, then 90 ml water
Before bedtime snack
Bedtime, 90 ml water

I feel like we are on a precipice of a good thing, but the next few weeks will be a journey. Here are some FAQ's: 

How can you help? 

You can ask how we are feeling about the journey, what Evie's favorite food or snack is, or any other upbeat question  you can think of.  Unhelpful questions would be about whether she has lost weight or how much is she eating.  Telling her to eat all of her food is the opposite of what we are supposed to do right now. We are supposed to focus on the emotional part of food for her, to help her feel safe and willing to try other parts of eating.  You can help us focus on the fun as well, by asking her what her favorite ice cream flavors are, or what's her favorite snack/dinner food. 

How long will this take? 

We don't know. It's kind of up to Evie. But Step 1 is likely going to be 1-2 months, at best guess.  And then Step 2 also depends on how she does through cold season and whether she is drinking by mouth enough to stay hydrated (this is going to be a struggle).  It could be another year until she has the feeding tube removed. Usually the doctors like to make sure that it's a sustainable wean. Wouldn't that be a great Christmas present for 2021?

How did the last 2 days go?

Day 1 went smoothly! Just a little cranky in the morning, and then was more enthusiastic about snack time.  Day 2 was interesting--she kept asking for more breakfast and has been really happy about snack time. I'm getting good at blending peanut butter chocolate smoothies! 

Thanks for your encouragement and prayers for our journey.  Cheers for Evie are welcome! (Just don't tell her to eat all her food. :P She will eventually, and I can't wait to take her to McDonalds for whatever she wants someday!)

Evie's Favorite Masks

 Hi all!  This is Evie, and I want to share with you about my favorite masks. Mommy tried a few different types, and this is the one that I don't whip off right away.  Why is this type my favorite? I think because the ear loops fit me well and don't make my glasses fall off.  Mommy likes that they are made of cotton muslin and the ear loops are adjustable with a plastic adjuster. 

Mommy asked the Etsy shop owner if she would share a promo code with me and my friends, and she said yes!  If you search for BeWellGroup in Etsy, you can use the promo code "EVIE20" and get 20% off!!  Mommy has bought at least 6 of these for me in preparation for school.   She likes the adult version too, because they have nose wires and filter pockets.  Hope you enjoy then as much as we do!  (Mommy's note: This is an honest review and we received nothing for posting this.  We honestly really love these masks and wanted to share them with you!)

I start school on Monday with an short morning in my new classroom.  I am excited! 

Quarantining with Evie

Quarantining with a preschooler (soon to be kindergartner) is both wonderful and terrible.  Mostly wonderful. But sometimes I feel like I'm doing a terrible job as a mom and as a sudden teacher.  And then other times I feel like I deserve an award for working my full-time job and still teaching her things.  I oscillate between these feelings as fast as I find snacks throughout the day, because why not? 

Here are some things Evie has learned during this time of quarantine:
1.  How to say I Love You.  As of August, she now says, "I love you SOOOOO much!"
2.  How to dance the Robot Cha Cha, courtesy of her music teacher sending along videos. Robot Cha Cha is a made-up dance, but she actually dances to Apache, by the Sugar Hill Gang.  Every single night. 
3.  How to tell Daddy to dance the Robot Cha Cha, and make us all giggle.  Now Evie just points at her Dada and says, "Dada Dance." And then he has to dance.
4.  How to read the words "God," "love," "pray," "toe" as of April, and now as of September, I can truly say she can read most words in a board book.  She doesn't even let me read the words for her Bedtime Prayer book now. She has to read it to ME.  She is very proud of herself. 
5. Leaving the house is a source of joy when you stop taking it for granted.  We have gone to Russell Orchards, Cape Cod, Horn Pond, and countless trips to the playground once it opened.  It's been so helpful to leave the house. 
6.  To ask for the book "Peck Peck Peck," she can hit the button for "woodpecker" on her Nova Chat (if you don't know this book, it is one of our favorites).
7.  To cook something in the microwave for 1 minute. Don't worry, she's not strong enough yet to open the microwave door herself. 
8.  That her reflection is visible in the oven door and the microwave door when she wants to look at herself...all the time. 
9.  Simon Says MUST be put to song, and Mommy must sing it with the ukulele every time, and dance around until she is panting excessively because she is now completely out of shape.
10.  How to coast down the driveway on her scooter without hitting the bushes.
11.  How to pretend to count to 10 during hide and seek while totally peeking to see where Mommy or Daddy went to hide. She refuses to hide. She only seeks. 
12. How to be adventurous in tasting foods like broccoli, french fries, ribs, cheerios, and noodles. Her newest favorite is cranberry sauce--she is truly my daughter. 
13. How to play T ball indoors and tag kitchen appliances as bases.  I blame this Youtube kid: https://youtu.be/AZUAh3iA75Y

14.  Evie's vocal language has really taken off in the last 6 months.  She now independently says things that surprise me, like "Mama hug Evie" and "Purple Stars (for which pajamas she wants to wear)."  She spontaneously bursts into song, and sometimes gives a monologue that I don't completely understand.  Her favorite pastime is naming all of her plastic vegetables. It's going to be a good rest of the year as she expresses herself in so many more ways! 

Things I have learned during this time of quarantine:
1. How to transition quickly from a Zoom call with preschoolers to a Zoom call with colleagues. It should be interesting this fall with hybrid/remote learning!
2. How it is essential to have leggings for each day of the week.
3. How much I love and miss the cameraderie with my colleagues at work.
4. The many ways of spatial engineering necessary to fit food in my freezer.
5. The many items I can make with overripe bananas.
6. How short Evie's attention span is after I took the trouble to set up a game or something to cook together. (We are working on this!)
7. How much I appreciate my husband, who does his fair share of hide and seek, feeding tube schedules, bath time, feeding meals, and picking up whatever takeout I am craving.
8.  That the Netflix show Kim's Convenience is hilarious.  And how much I enjoyed Crash Landing On You on Netflix, which jumpstarted my new hobby of watching Korean dramas.  
9.  That good ergonomics are essential in keeping me feeling like an 80-year old woman after working from home.  I finally gave in 5 months later and got a new desk chair!  
10.  Seeing patients during a pandemic makes you work faster in the exam room, but has also made me ask myself how I can connect with people in the short time I have with them, and despite wearing a mask and goggles. 
10. That we are so immensely blessed to have a ray of sunshine named Evie who makes quarantining not so bad, when we are having dance parties and laughing over the little things.

And that brings us to September, my friends.  Evie starts kindergarten amidst a pandemic, but she is going to be ok.  She keeps a mask on pretty well, and her excitement for learning and her desire to see new places will carry her through the transition.  

If you're the praying type, we could use prayer for the perfect 1:1 aide (ESP) for Evie.  Her wonderful aide for preschool is not continuing with her to kindergarten, and this is another opportunity for God to provide yet another wonderful person in Evie's life.  We also are transitioning to full-day school, which is a first.  This means eating lunch by mouth in school. With the delicate balance between her need to eat enough to gain weight, and the potential distractions at school, this will likely be a key point of transition.  They are making accommodations for her, but I'm still concerned, especially as we continue to wean her off the feeding tube.  Thanks for your prayers and positive thoughts!

How to prepare your child to sleep like a mummy (for a sleep study)

 Among the many things that the pandemic shut down was Evie's first sleep study. She's a little behind in getting this done, as most kids with Down Syndrome have it done sooner, but since she didn't snore or have other symptoms, we weren't in a rush.  When we finally had it scheduled, it was canceled early in the pandemic.  Now the new date is finally around the corner, and it caught us off guard! 

One of the resources I have come to really appreciate is the Social Stories site on the Boston Children's Hospital website.  If your child is due for a procedure at the hospital, it's worth checking out. 

My main goal this time is for Evie to have an inkling of understanding about why the heck they are trying to put stickers on her head and wrapping her up like a mummy.  I usually aim high, but I have very low expectations for her cooperation level!  I will just be pleased if we don't have to do this again! 

For this sleep study story, I took the provided PDF file, used Adobe to convert to Microsoft Word, and then edited in her name and pictures of her to superimpose over the 10 year old boy in the story. Putting in her picture is definitely worthwhile, as she is a sucker for anything that has her picture on it! 

A big thank you to the parents who have gone before us.  So far, we've learned that my husband isn't getting any sleep that night, as he has graciously agreed to volunteer as tribute.  Best dad ever! Stay tuned for the rundown on Evie's adventures in the sleep lab!

Evie's 4th surgery...and tips!

Hi friends, it has been awhile. Since we last wrote, Evie had a few minor procedures that we had been "collecting" in order to justify putting her under anesthesia.

As soon as it was evident that we would be scheduling surgery, the part of my brain that stores away medical info for Evie kicked in, and was ready to unleash the many departments that wanted "in" on an anesthetized Evie, because "awake Evie" is not very cooperative for medical visits (and none of us could blame her!).

Evie's collection of minor procedures included:
1.  Strabismus surgery to correct her eye turn (again).  For our eye nerd friends, she had bilateral muscle resection of her lateral recti and also her inferior oblique in the right eye, as well as Exam Under Anesthesia (EUA) and DCR.
2.  Punctal duct clearing/expanding--Evie's punctal duct anatomy is quite interesting and takes her tears on a roller coaster that goes up and then down, which means that her tears just come back out and run down her face, and then people ask me if she's sad.
3.  Eye Exam under anesthesia (EUA): to get a proper assessment of her glasses prescription, they will do objective testing of the retinal reflex and check her retina.  Let's just say that Evie has inherited our myopic genes, and needs some myopia control.
4.  Cardiology: finally got an echocardiogram, because girlfriend does not like stickers that she didn't ask for.
5. Cerumen cleanout: otherwise known as cleaning out her earwax.  She gets in these bad cycles of failing low tones on hearing tests, cleaning out her earwax, and then passing the hearing test.
6.  Ear examination--they will be actually able to see inside her ears!
7.  G-tube surgery: There has been a lot of excess granulation tissue building up around her feeding tube port.  The surgeon cleared off some of this tissue, because it had gotten so high that we had to go up a size in her g-tube button.

It is apparently a small miracle that all 4 specialists were available on a certain date, so we only had a 2-week warning that this was all happening soon.  Looking back, we beat the COVID shutdown by a week, and I am so grateful.

I wanted to share some of the tips we learned this time around, in case it helps someone else.

1.  Social Stories: Last time Evie had these procedures, she was 2 years old and easily forgot how traumatic it was for her.  This time, she is 5 and is going to be SO angry when she wakes up from anesthesia.  I read the scheduler's instructions, which listed an e-mail address for Child Life services.  I e-mailed Child Life and received a link for the Day Surgery social story, which I will likely edit a bit and then print out to read with Evie 2-3 days before the big day.  Hopefully this will help her to understand what is happening when she goes to the hospital.

We practiced on a doll and read Doctor Maisy to help her prep for pre-op, but in the end she still screamed her head off during vital signs. 

2.  Communication Device:  I wanted to empower Evie to be able to communicate in the time that she is waking up and they are just alerting us that we can go to see her in the PACU.  I asked Child Life if we could arrange for her to have her Nova Chat in the recovery room, and they said that they would advocate for us to do that. However, while Child Life was so nice and brought her toys in the pre-op and post-op areas, Evie really didn't want anything except Mama, so in the end she didn't need her Nova Chat.

3.  Nail cutting and hair trimming:  No joke, if your child with special needs is ornery when you try to cut their hair or trim their nails, you can ask the surgeon if they are willing. The ophthalmologist brought this up with us and said it was no biggie if I wanted a nail trim that day for Evie. I got a big kick out of this, but for some people it could be a lifesaver.

4. Waiting in Pre-Op: Parents, don't think that your child will be taken at a predictable time before their surgery time.  Our arrival time was 11:45 am, and surgery time was 1:15. Evie got taken in at 2:15 pm.  But of course I had forgotten that things run behind, and had waited to eat lunch. I ended up sneaking a candy in the bathroom so I wouldn't pass out from low blood sugar.  I was trying to have solidarity with all the fasting children around me, but man, I just couldn't do it. Evie did better than I did and fasted longer than I did.

5.  Recovery: This is the hardest part.  Evie was so uncomfortable.  She wanted to throw up when we got home, but there was nothing to throw up. We had to try small amounts of Pedialyte gradually so she could keep it down.  It just broke my heart to see her so uncomfortable and sad. It was a bit like having a newborn again, with staying up all night and rocking her.   Thank God she felt much better the next day.

Here we are, 3 weeks out after the surgery. Evie's eye turn is noticeably improved, although not 100%.  She does still have watery eyes, but that may be from all the screen time she is getting during this COVID-work from home-homeschooling phase of our lives.  All in all, she was a trooper, and we are so thankful for the care we were able to receive in person, just in the nick of time.

If you have read this whole thing, you are a true Evie fan or a fellow parent of a medical needs warrior.  Much love to you.

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