January 1, 2019
Woohoo, we did it! Dottie turned one year old (Dec. 31st) and is, all things considered, so very healthy. She is 29 1/2 inches tall and got a new carseat for Christmas!
She is connected to her HPN (Home Parenteral Nutrition) for 15 hours a day, from 4pm to 7am. Her G-tube goes 20 hours a day at a rate of 14 mL of formula per hour. Nearly 10 ounces of formula!! She continues getting several bottles a day for a total of 6 additional ounces of formula. Dottie also gets to eat 5 tsp of veggies a day (this was a fairly recent increase from 3 tsp) and also gets 5 Gerber puffs a day. So far she has loved all the veggies we have given her. I continue to cook and blend her veggies up to puree because otherwise we see the tiny little bites come right out the other end. I like to think she has a better chance of absorbing some nutrients from the food if it's all blended up (this is not scientific, just my hope).
Every 2-3 weeks we are in contact with Dottie's GI team at Doernbecher. They ask about all she takes in, all that comes out, and how she is doing overall. Then the TPN team, a combination of GI doctor, nurses, and nutritionist, discuss her case. They continue to be amazed at how well she is doing and make small increases to her food and formula as time goes on. On these weeks we have a nurse come to the house to draw blood for labs. These labs are important to the team so that they can make changes to her TPN and Lipids formulas. They check dozens of things and although I can look at the results I don't know what much of them mean. It's all the broken down parts of nutrition that most of us don't have to think about, but they can change each different part to meet her individual needs. It's amazing.
We celebrated her birthday with a party, Super Hero themed, and Dottie dressed up like Wonder Woman. She may not realize it, but she is our Wonder Woman and amazes us. The invitations went out a bit late and it was on a work day but many people were still able to join us. We ate delicious brunch foods and watched kids run circles around the house, it was awesome. I loved seeing Dottie move around freely and play with different kids. We accepted donations to buy crib mobiles for the Doernbecher NICU and I am happy to say we received two mobiles and $310 to buy more!
Her cousins are getting so good at watching her and playing with her, Chloe, Ruby and Zeke like interacting with her but Chloe is best at making her smile and laugh. She likes to steal Isaiah's pacifier and though he is taller and bigger he might be a little scared of her because of this, she's quite quick at grabbing that thing out of this mouth, haha! Mo doesn't much seem to care for her because she often wants what he has or visa versa. They will all figure it out in time.
Dottie is now walking and it's much more efficient so she doesn't go back to crawling often. She loves for us, "to get her" and she now hustles away so we can grab her and tickle her. She walks and walks all over the house. She will stop to play or read for a bit and then moves on for a few laps and then settles in a different room to play with something different. This goes on and on all day! Boy, it's quite a workout for mom. I'm happy to say to loves books and will often spend the largest chunks of time in one place with books. With a grownup willing to sit and help her she will bring one book after another to read over and over again. She mostly loves turning the pages, but is starting to look at the pictures and recognize things.
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