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| A temporarily tube free cuddle bug |
Pediatrician:
Evey now weighs 12 lbs. 5 oz. and is 23.5 inches long (Her legs don't quite extend all the way, so she is probably closer to 24 in. long). Her growth rate is right on track, despite all the feeding issues we've experienced. What an amazing blessing! She is now fitting comfortably in her 3-6 month clothes. Evey is also ready to start eating from a higher flow nipple, which we hope will boost her bottle feeding percentages. Most babies at about 4 months of age are also ready for their first solids-rice cereal. However, Evey's feeding reflexes are still a bit immature, so we won't get to start her on rice cereal yet. We are, however, supposed to be watching her closely and working with her Occupational Therapist to get ready for that next big step. Nate and I hope that once she can enjoy some rice cereal that she won't have to depend as much on her bottle feeding skills to meet her daily nutrition needs and hence can start preparing to come off the NG tube. Her bottle feeding right now is improving, but still not enough to go without the support of the NG tube. Evey is also preparing for her next round of vaccines, which we have had to put off several times due to illness and her seizures. Hooray for getting back on track, even if only a step at a time!
Short term goals:
-Experiment with higher flow nipples to encourage higher bottle feeding percentages
-observe and prepare for solids
-continue tummy time and physical therapy
-stay healthy and seizure free
Neurology:
Evey's neurologists are so happy with her seizure progress. We have officially been seizure free for one month! It is truly a miracle and answer to prayers. Without seizures, Evey has been able to make so progress. When the doctor saw her, she said, "Are you sure that is the same baby, did we send you home with the right one? It sure looks like her but she is a new baby! What are you doing to her?" I cannot think of higher praise we could receive. Evey is definetley still struggling with muscle tone issues, but even since a month ago she has shown great improvement. If all continues to go well, we are to return in 3 months and talk about slowly weaning down her seizure medications. Hooray hooray!
Goals:
-Continue to go seizure free
-continue exercises to improve flexibility
-continue cautiously with vaccinations and watch closely for seizure activity
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| This is what seizure-free looks like! |
Rehabilitation and Movement:
Evey's Rehab doctor gave us the most to work on, but provided some words of encouragement as well. Everleigh is beginning to hold her head up, though she struggles with controlling it. Evey is also very tight in her shoulders, which is limiting some strength and mobility in her neck. We have been given a new set of exercises to add to her daily regiment to help improve the muscle tightness. Even after a few days, she is already looser in her shoulders! Hooray! However, if in a few months there is still significant tightness in her muscles, we might have to consider adding a new medicine to help. but we are hopeful that it wont be needed. The good news? Everleigh's doctor says that if she can sit up unassisted by age 2, she will walk by age 5. She is already on the right track! One of our biggest ambitions for Evey has been eventually walking and playing on the playground. We feel so blessed and uplifted by this prognosis.
Goals:
-continue working on tummy time to strengthen the neck and trunk
-stretch shoulders and neck everyday in hopes of gaining a full range of motion
-work on holding head up and helping Evey's body learn the motions of rolling over
-continue to work on feeding
Overall, Evey had an awesome round of check ups! She is truly our miracle baby. She is making such rapid progress and gets a little better everyday. Thank you, thank you, thank you for all of your love, prayers, and support. We love you all and thanks for reading!
-Nate, Steph, & Evey
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