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.
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.
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.
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. 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.
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!
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.
This past year was full of firsts:
1. Walking independently (goodbye, walker!)
2. Putting solid foods in her mouth without gagging or crying
3. Licking an ice cream cone voluntarily and repeatedly
4. Saying more words verbally
5. Graduating to bigger ankle braces
6. Playing dress up and interacting more with her peers
7. Getting glasses (and wearing them!)
8. Starting to notice bathroom routines
9. Reading books to herself
10. Reading sight words
11. Using full sentences on her NOVA chat device
12. First time to Disney World and Disneyland
Evie celebrated her birthday on an airplane to California for Christmas, and she traveled so well. She even walked herself down the jetway. Our little girl is growing up!
Wishing everyone a wonderful 2020, full of more firsts!
This conversation had me thinking. Evie deserves to have a voice in Sunday School too, but the device shouldn't be a distraction. We will need to help the teachers to describe the device to the other kids as something that helps Evie talk, and that there would be a no-hands policy. Inclusion means helping everyone to participate, and my job as a parent is to empower others to help Evie to be fully at the table, voice and all. I am so thankful for the teachers who volunteer their Sunday mornings, and especially Evie’s 1:1 aide who does it out of love for Evie. She is our partner in helping Evie to participate, and I can’t wait to brainstorm with her.
Leave it to a 6 year old to share some wisdom with me. I can't wait to see what she becomes when she grows up!
I found information here and there on various forums, by googling "which resort has freezers," and "ice packs at Disney," and "sensory issues at Disney." I wanted to share what I learned in hopes that our experiences can help someone else.
The technical 411 for fellow tubie parents: Evie is 4 years old, has a g-tube, but eats 3 meals a day of blended foods by mouth. She gets supplemental Real Food Blends 3 times a day. We are at about 30% wean. We had gone to 50% wean, but she lost too much weight.
The technical 411 for fellow sensory parents: Evie is terrified in a closed room environment with a lot of people. She hates it when people speak on a microphone, and has almost physical pain when people start clapping and cheering. However, she does fine in a mall or a park because they are not as enclosed.
For those of you for whom sensory issues are new, the body basically has a hypersensitive or hyposensitive response to a certain stimulus such as noise or light. Here's a good article that quickly explains it: https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/sensory-processing-issues/how-to-explain-sensory-processing-issues-to-friends-and-family
Here are our tips broken down by topic:
TUBIES AND BLENDED FOODS
1. Disney is very accommodating and will try to help. Don't be afraid to ask for what you need. My #1 worry was how I was going to keep Evie's blended food cubes frozen if there wasn't a freezer in the Disney resort hotel room. I asked the Port Orleans staff for an extra fridge to turn to freezer level, and a microwave in our room (this isn't standard). They were able to make the microwave happen, but the fridge wouldn't be able to get up to freezer level, so they told us to bring our frozen food cubes and ice packs to the bellhop, with access 24/7 whenever we needed it. This was probably the most inconvenient part, because the bellhop was across a bridge and down the walkway, and I felt I should tip each bellhop when they went to the freezer for us. But still, we made it work.
2. Choosing a hotel: if you want the Disney experience, but can't do what we did in #1, I would say to stay at a DVC in a suite, or stay off-site in a suite. Having stayed at a suite (Homewood Suites) for a conference before we moved to Port Orleans, I really missed the "suite life." I had a full refrigerator/freezer and counter space to assemble Evie's food, and it was very convenient. The suites at Art of Animation and Fort Wilderness Lodge have fridges, but they were pretty pricey. However, the ambiance and the great customer service were pretty great at Disney.
3. Each time when we go on a trip, I make a list of how many blended cubes we need to bring. For a 5 day trip, the list would look something like this:
Travel Day 1:
Lunch for plane
PM: Chicken Curry (CC)
AM: French Toast (FT)
Lunch: Chicken, Rice, Peas (CRP)
PM: Goulash (G)
Formula x 3 (60 ml + 60 ml + 120 ml)
AM: Pumpkin pancakes (PP)
Lunch: Chicken Tikka Masala (CTM)
Formula x 3
Formula x 3
Dinner: G on plane
Formula x 3
I then have a ziploc bag for each type of meal, and count "3 2 oz cubes per meal x # of days" needed into each bag. I usually microwave the cubes in a bowl for 1 minute and then add Noosa yogurt (about 1 1/2 oz) and mix them together. Evie's favorite flavor Noosa yogurt is pumpkin.
4. Of course, the first day of Disney, I forgot to retrieve the ice packs from the bell hop before we got on the bus to Epcot! Our Disney planner had told us about Baby Centers, so we went there hoping to use their fridge. We found out that they did not have a fridge for us either. They just have changing tables and they sell various baby supplies. They sent us to First Aid, who gladly gave us plastic bags filled with ice, and this did the job. They gave us extra plastic bags too, so we could refill the bags with ice at other quick service food locations.
5. Water flushes all the time! In 90+ degree weather, we had to remember that we needed to give more water flushes than her usual routine. The heat made her quite lethargic, and she often refused sips of water.
6. We use the stroller bag from Thirty-One gifts. It travels well and keeps Evie's food pretty cold, depending on what kind of ice pack we use. They don't always sell it, but when it comes up, it's worth grabbing one.
For the plane, I loaded ice packs into this guy:
So is it doable for a tubie? Definitely! We just gave food in quiet places and then went about our business having fun. Food storage can take some extra planning, but definitely feasible. I did read that Disney chefs are wonderful at blending up food as needed if special requests are made, but we did not get to test that.
1. Rides: Evie does not like dark and noisy places. We tried the Frozen ride, the Pooh ride, the Nemo ride, and even It's A Small World. I would say that she tolerated them, but hid her face most of the time, unless a character she recognized came out and she peeked with one eye open. The Disability Access (DAS) pass really helped us avoid lines in dark and noisy areas, but I would say that she is not ready for rides. Perhaps with headphones, but her sensory issues mean she doesn't like things on her head either!
|This ride was not as dark as the Frozen ride, but quite jerky at times.|
2. Shows: If the child loves certain songs, I think this is still worth trying. When we went in, I told the cast member acting as an usher that my child may not like the show and we needed an easy exit. They showed us where to sit so that we could exit easily. Luckily, Evie enjoyed "Let It Go" and was able to sit for the entire show on my lap.
|The Frozen live show was pretty cute, and we sat near the exit just in case, but Evie enjoyed listening to the music.|
3. Evie did ok if she was in her stroller going through a crowd. I did bring headphones, but it just seemed too hot to wear these when it was so hot already.
4. Disability Access Pass (DAS): When you first get through the entrance, there is a Guest Relations building somewhere in the vicinity. On the first day of your Disney trip, if you go to the Guest Relations team, you can ask for a Disability Access pass. They do not want to know diagnosis or need to see a doctors' note. They want to know what kind of accommodations the person needs to be able to enjoy Disney. I told them that Evie is afraid of large crowds and noisy environments. The cast member immediately did some stuff on his iPad and scanned our Magic Bands, and that was it. Looking back, I might have also said that she needed her stroller as a refuge when standing in line. This would have gotten us a pink tag for our stroller so that we could take it into buildings, unlike everyone else who needed to use stroller parking. But we did ok without the pink tag.
Resources to read: Undercover Tourist gives a great overview of how to get a DAS.
Disability Resource in general: Great blog by Undercover Tourist
5. Places of Refuge: In such a busy park, it was hard to find places for Evie to take a nap for 2 hours. At Epcot, we spent 2 hours in the Baby Care Center, but later found the food court at The Land, which would have been much more comfortable for the whole family. At Magic Kingdom, we went after her nap, so didn't need a place to camp, but knowing that the Baby Care Center was there was helpful. Our friend suggested Pinocchio's Village Haus, from which you can see the It's A Small World Boats go by. Next time... At Hollywood Studios, we found the ABC Commissary (also suggested by our famous dad blogger friend Uncle Joe), and spent 2 very comfortable hours there.
Orlandovacation.com offers a short list of various quieter places in each park. There is an even longer list here: https://www.keytotheworldtravel.com/sensory-friendly-spaces-at-walt-disney-world/. We were ok with white noise at cafeterias, but others may need actually quiet spots to decompress.
6. Disney does a great job of helping people with autism and cognitive disabilities. They have a summary of their services here: https://disneyworld.disney.go.com/guest-services/cognitive-disabilities-services/. Their official brochure for guests with cognitive disabilities is here: https://secure.cdn1.wdpromedia.com/dam/wdpro-assets/help/guest-services/guests-with-disabilities/WDW_Cognitive_Guide_compressed.pdf
7. Use your phone flashlight or buy a mini light for your child who is afraid of the dark areas on rides. On one of the rides, it became pitch black for a minute, and we just sat there. I ended up using the light of my phone to comfort Evie, letting her know that everything was ok and that we could have light if we needed to. She definitely felt better after seeing the light.
That’s what I have for now! Please share your Disney hacks for feeding tubes and sensory needs of you have some!
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