Evie is still on breast milk only. We have to thicken it up with rice cereal because of her reflux but she is still doing great with that. She eats 6oz every 4 hours and let's just say she never misses a meal!
We just started her on prune juice (to keep things going). She gets a 1/2 ounce twice a day and we hide her ditropan in it. We are hoping this keeps her more regular without having to add yet another medication to her daily routine. Pray with us that we can get her systems working properly without further intervention!
We finally transitioned her into her crib. I was ready to stop tripping over the bassinet in our room but I was not ready to have her so far away from me (it's a whopping few feet across the hall, but still!) We got a video monitor in her room all set up so this worrying mommy can rest a little easier knowing I can peek open my sleepy, dry eyes in the middle of the night and make sure she is breathing! I can zoom in the camera and it gets really close to her tummy so I make sure it is still going up and down. (I really do that! ha!!)
During the day Evie isn't on any type of nap routine but I think this is something we are going to have to get her on. She sleeps through the night just fine but doesn't take distinct naps during the day. That's hard for this OCD, over-scheduled mommy, I prefer set nap and bed times around the house!
Gavin loves helping out with sissy. He likes to "help" feed her and burp her and likes to tell me she is "poopy" every chance he gets. It is so much fun watching him interact with her. His most recent obsession are her cheeks - he goes right up to her and touches them ever so lightly, as if to pinch them and says "Evie Evie Evie Evie Evie" over and over AND OVER again! He also likes to tell everyone "Evie pretty". He loves to point out her bows and thinks she is extra pretty when she has one on. When mommy forgets to add a bow to an outfit he will say "Evie bow go?", so mommy obliges and puts a bow on her head :)
Evie is doing great at physical therapy. We know for sure she has function at L5 and we are pretty confident she has S1 but only time will tell. We practice making her bear weight on her legs. She can roll over both ways but usually chooses not to, probably because she has all that extra weight! We are working on sitting up which she can do for about 15 minutes with a little help from a bobby pillow. She loves looking around but that head of hers starts to get heavy and her posture starts to slouch. It is fun watching her progress over the weeks and see her PT get excited when she makes a new accomplishment. Have a mentioned how much we LOVE our PT?!?! She is the best!! The absolute BEST!
At the last SB clinic appointment we had the ortho doctor decided we needed to start bracing Evie's left foot. She has metatarsus adductus and it seems to be getting worse. This is completely correctable with the correct intervention. We had her sized for a brace that can be adjusted to gradually stretch out that muscle under your foot so that her toes quit pointing in.
Hopefully the brace gets here soon. We got approval through First Steps of Missouri (an awesome program for certain children with disabilities that is state funded) and we are now just waiting on final approval and for the brace to get here. Hoping it doesn't cause her too much pain to have her foot stretched but I know this is what is best and our PT has been recommending a brace for almost 2 months now - just had to convince our ortho!
We have a couple exciting weeks coming up. The first annual St. Louis Walk N Roll for Spina Bifida is this Saturday and we are so excited to participate. We are so excited to share this time with our friends and family. We have people from our daycare coming, co-workers, friends and of course the whole family! We will be sporting our shirts and will have a fully decorated stroller and signs for Evie. Then Halloween - Gavin is going as a cowboy and Evie as an Indian. Wish me luck as I make Evie's costume this year!
God is so good! We have a beautiful and perfect daughter and the most handsome and perfect son. Blessed beyond words!
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