She is doing so great! She weighs 22 pounds 5 ounces. She has lost a few ounces but that is ok since we know what is causing it. Evie is no longer spitting up like she was so we were able to stop the cereal in her bottles (pure carbs) so she is losing a tiny bit of weight. We are having trouble with her being able to eat now, though. She was so used to the thickened milk she no gags on it even with a level 2 nipple. We have to add 1/2 tsp of cereal to her bottles so the flow is slow enough for her not to gag. To most parents that doesn't sound like a big deal but that sends red flags all up for us....that dag gone Chiari II makes me nervous! A symptom of Chiari Malformation II is gagging. Evie should be able to keep up with the flow of a level 2 nipple. We have taken the cereal out almost a full month ago and we still can't get it completely out. We did start solids and she is able to take food from a spoon without gagging so our neuro team isn't worried. We will be doing fast paced MRI in March to check her ventricles and Chiari II.
Evie is doing great with her motor skills! Our physical therapist is so wonderful at teaching us what to do with her and why we are doing it. Evie can now sit up, all the way, for long periods of time! She loves to sit and play with her brother and he loves to play with her on the floor and gets right up in her face and says "Hi Evie" or "boo boo Evie!" - they just adore each other...let's hope it stays that way. Ok, you're right, I'm not holding my breath ;)
She is capable of rolling both front to back and back to front but mostly chooses to either sit up or lay on her side. She is so stubborn, I have NO clue where she gets that from.
She can bare all of her weight now on both legs and push up. While it is only in spurts and not for too long we are over the moon that she figured out she could do that! We think alot of her weakness is in her hips and that is causing her the issues. When she was little she was checked for hip dysplasia because her hips were "loose" but an ultrasound and check by the orthopedic doctor proved she didn't have it. So her hips are loose but not loose enough to have hip dysplasia.
Evie now says "Da Da" and it's not just a sound. She deliberately says it and reaches for her daddy.
She has been battling a constant UTI for a few weeks now. We have her on a really strong antibiotic to kick it in the rear and then she will stay on a small dose of antibiotic for a while every day.
Our every day routine consists of size 4 diapers, 9-12 month clothes, about 20 ounces of formula a day (she's not too big of a bottle eater but her weight and everything is still healthy), fruit in the morning and veggies at dinner. She is a pretty happy baby and is proving to have some diva qualities about her. She has to have someone in her line of sight all day long or she will throw a fit. If one of her teachers walks away she will cry and as soon as they go over to her she is so happy and smiley...such a stinker!
On Wednesday we meet with our First Steps coordinator and physical therapist to go over Evie's goals for the next 6 months. At that time AFOs will be ordered for her as well as a walker/gait trainer. (At some point we are hoping Evie will get strong enough to where she can go to SMO bracing!) We also have our end of the year tests with urology and other clinic appointments on Wednesday. Please keep her in your prayers that everything goes according to plan :)
|These are AFOs - they provide more support which will help with Evie's hip weakness right now. AFO stands for Ankle-Foot-Orthotic|
|This is an SMO - it is barely even visible above a tennis shoe line. SMO stands for Supra Malleolar Orthosis - they provide less support to the foot compared to an AFO.|