Clearly I'm not getting any better at journaling/bogging. Thank heavens social media somewhat keeps track of our doings so that we have SOMETHING to look back on.
Vivian will be 2 in TWO weeks. (*crying*) The progress she has made in the past year is AMAZING. She is such a little smarty pants. Her little personality evolves and grows every day and it is the best thing to watch. She is endlessly sweet, yet strong-willed, determined, and stubborn all at the same time.
SHE EATS! A day we thought would never come! She's still a little picky but will usually taste almost anything. Then she'll decide if she wants more or not. A typical Vivian menu consists of oatmeal, eggs, Spaghetti O's, mac and cheese, hot dogs, tomatoes, strawberries, blueberries, cheddar and sour cream Ruffles chips, goldfish crackers, and cheerios. Considering that last year at this time she only ate 3 different kinds of baby purees, we are THRILLED that she eats as well as she does. She still has to be watching a show while she eats to have some distraction, but as long as she gets the calories, we'll take it. She still takes a few bottles each day, one before bed and one at midnight to get her through the night. She's still drinking Elecare junior formula and we add cornstarch in her midnight bottle. This makes it so we can go 7 hours overnight without feeding. Hallelujah!! I never thought I'd see that day either- and this has SERIOUSLY helped with my sanity.
SHE SPEAKS! (a little.) For a very long time in speech therapy we worked on eating. We only started working on actual speech about 6 months ago. Viv is smart- she knows what's going on. She understands what people say to her, and is slowly starting to verbalize herself. These are the signs and words she knows:
More- signs and just says the "mmmm" sound
All done- signs and says "ah-duh ah-duh ah-duh" She does this often to try to be done eating :)
Bye bye- waves
Hi- says "hiii" in a low voice
Give me- signs and says "da da" She does this a lot when she wants some of our Diet Coke.
Go- literally started doing this TODAY. After saying ready, set, she responds with "doh!"
SHE WALKS! This might be the biggest accomplishment of them all. Viv started crawling last September, when she was 16 months old. She went from being basically immobile to crawling around everywhere and loving the independence. We still worked on ordering a walker with her physical therapist since we really didn't think she'd walk for a long time. She started cruising around the furniture and surprised us all when she took her first steps while we were home in Utah for Christmas. I think being around lots of cousins gave her the motivation to keep up with them. And it was one of the best days ever!! It was definitely one of my proudest moments as a parent--to see her do something that I know was so hard and that took a lot of work to accomplish. Since then she's just been walking (and almost running) everywhere.
She loves being chased, tickled, and wrestled. Especially with Derek. He is the tickling king around here. He can get her laughing so much harder than I ever can. She loves books--we often find her in her room thumbing through every book we own. She still loves Sofia the First and Daniel Tiger. Her favorite movies right now are Moana, Trolls, and Sing. We usually watch any assortment of these shows while she's eating. And I'm trying to be better about limiting it to that. She loves to be outside. Even just to walk outside to the mailbox she can explore the tiniest things with enjoyment. She is just starting to learn how to crawl up on the furniture--and is quite mischevious about it when we try to keep her off of it so that she doesn't fall and break an arm. Music is still one of her favorite things and she loves to wave her hands and dance. She's starting to like pretend play and it's so sweet to watch her play with her baby doll. She gives her a bottle and walks her in the baby stroller. These days most of her favorite toys aren't actually toys- but water bottles, loose papers, my makeup brushes, or Derek's earplugs. She mostly just loves getting into things she knows she shouldn't.
Viv's Hyperinsulinism is still very much a part of our lives, but I finally feel like I have a handle on it. She still responds to Diazoxide which is a blessing. She takes .8 ml/ twice a day. Her blood sugar will still dip a little low from time to time but it can be controlled by food. If we can get her to eat something or drink a bottle it goes back up. Thank heavens for Derek. He gives me a lot of confidence with this condition that I never knew existed before this child. He understands it more than me (obviously) and is always the source of calm when I'm acting like a literal crazy person. We had genetic testing done that came back inconclusive- so she doesn't have any gene mutations causing the disease. We are heading to the Children's Hospital of Philadelphia in May for an admission, where they are basically the mecca for CHI. Viv will have a fasting test done to see how long she can go without food before her blood sugar drops. We are looking forward to working with the doctors there to see if they want to change anything with her treatment. Dr. Riba at CCMC has been nothing but amazing, but we are excited to take the opportunity to go to CHOP while we're here on the east coast.
Derek is applying for jobs!! He is in his last rotation right now in OB/GYN. It's not his favorite but he does enjoy helping with the deliveries. He has 4 more weeks and then he'll be back in the classroom over the summer. The amount of pride and praise I have for him deserves its own blog post- which will come. In a nutshell- he is AMAZING.
