Wednesday, September 30, 2015

39 month update & Potty Training

What have we been up to lately? 

Our company left last week and we immediately began potty training. We started with a bare bum weekend for both of the little dragons. How did it go? Overall, pretty well. 

We had many activities planned so that we could keep the kids semi-contained while watching for any bladder and bowel activity. We did the whole weekend with one portable kids potty moved from room to room, and also used our one bathroom when needed. It was intense but full of results, and definitely worth it in the end. 

Maisie is a Wonder Woman who trained herself on days and nights in just one day. Since the first 24 hours, she has not had an accident. Her perfection is accompanied by a stubborn unwillingness to sleep for fear of accidents at night- but she has done an outstanding job overall. Her understanding of sleep and natural urgencies is improving slowly but surely. 

James has had about a 70% success rate in using the potty chair during the day. He prefers to use the little potty seat as it is less intimidating and more comfortable. He is doing better every day and grasping the general concept well. James still needs assistance with transfers on and off the potty so any progress we make is a step in the right direction. 

Here's what the little dragons have been up to lately...
Book: Princess Stories or Tumford the Terrible
Song: anything by Caspar Babypants or Disney princess music
Show: Peppa Pig
Words: I am so impressed by Maisie's ability to recall. She loves the Eiffel Tower and can identify it anywhere and tell everyone about how I was scared of going to the very top when I visited. 
Toy: Magiclip Princesses
Food: lemonade, cheese, cookies, pancakes, waffles, eggs, avocado, fruit snacks, blueberries, bananas, muffins, beans, rice, tortillas, quesadillas, Indian food, chips, brownies, candy, 
Animal: dog, kitty, monkey
Time of the Day: Cuddle time
Activity: Playing outside
Color: pink, purple
Clothing Size: 18-24 month or 2T tops, 18 month or 2T PJ's, Pants 18 months to 2T (skinny waist and longer length), Shorts are 9 months and up. 
Shoe Size: 6.5
Weight: 22lbs 3oz on 09/18/2015
Height: 34.75 inches
Number of Teeth: 20

Book: James and the Red Balloon
Song: anything by Caspar Babypants
Show: Elmo's World: Balls!
Words: James has a few jokes (he came up with them on his own). If you say "you're funny", he'll say "funny looking". When Maisie was using the restroom she told James she needed a little space, so he put his fingers in an open pincher grasp, reached out to her and said "here you go". He repeats both of these jokes frequently; he is such a little ham. 
Toy: The globe, rainbow, his ball collection, and any type of balloon.
Food: lemonade, grapes, meat, pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, muffins, peanut butter, pasta, rice, pizza, chili, tortillas, cheese, quesadillas, Indian food, candy, meat
Animal: dragon or bear
Time of the Day: watching Elmo's World
Activity: putting away toys 
Color: green
Clothing Size: 18-24 month or 2T tops, 18 month or 2T PJ's, 12-18 months pants (skinny waist and longer length), Shorts are 9 months and up. 
Shoe Size: 5.5, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 5.5-7 extra wide.
Weight: 22lbs 5oz on 07/07/2015
Height: 32.5 inches
Teeth: 20

Tuesday, September 22, 2015

Transient Erythroblastopenia of Childhood

For the last several months, Maisie has been battling intermittent fevers and fatigue. We began to notice that she was very pale with dark circles under her eyes. She also picked up a cold a few weeks back and needed oxygen at night to keep her saturations above 85.

We decided to bring her into Dr Jim's office, and they were worried about the array of symptoms. They ran labwork and ordered antibiotics, and directed us to start nebulizer treatments to try to improve her respiratory status. 

When the labs came back, we learned that Maisie was extremely anemic. These results were so concerning that Maisie was scheduled for an emergent appointment with an Oncologist at the Center for Childhood Cancers and Blood Disorders at Children's Hospital. 

At the appointment, more labs were drawn and the Oncologist personally evaluated the smears to determine what might be the cause of Maisie's anemia. Luckily her physical exam was unremarkable with the exception of a fever and pallor. The Oncologist strongly felt that a condition called transient erythroblastopenia of childhood or TEC was the cause. TEC occurs after a virus or illness and affects the bone marrow's ability to create red blood cells. It is normally a temporary disorder that only affects children, with the anemia lasting between 1-8 months typically. There is no treatment if the child's reticulocyte count shows recovery, as Maisie's does. 

We will follow up in a few weeks to make sure that Maisie's red cells are recovering from the TEC. As of now, Maisie is feeling better, regaining strength and color, and needing less oxygen support at night. Hopefully this is just a one-time bump in the road for sweet Maisie. She handled everything extremely well, but definitely does not like getting "poked". 

Thursday, September 17, 2015

Maisie Day 2015

Three years ago we brought our baby A, sweet Maisie, home from the NICU. That same day we were able to hold our twins together for the first time, exactly 83 days after their birth at 27 weeks. James would not be discharged for another month and a half, and would endure several surgeries in the final weeks of his NICU stay.

Following Maisie's discharge home she has had several returns to the hospital for respiratory issues and she continues to struggle with chronic lung disease. This requires ongoing monitoring and oversight, and additional intervention during illness to keep her stable. 

Today we celebrated Maisie. We spent the day adventuring with our cousins, ate Arepas for lunch and dinner, and ate caramel brownie sundaes. She played with her Belle princesses and watched Peppa Pig and Elmo Ball.

Maisie wants to be a nurse when she grows up. She's definitely grown a lot since we brought her home weighing just over 5lbs.