Deb here to share positive updates…
Thank you to each and every one of you for all of your continued support. We are so thankful to have Ella home, and apologize for not keeping you updated on her progress. We all have been so busy with our new routines.
It’s been almost 3 months since we have had Ella home, and that time has flown by. The progress she is making amazes us daily.
Over the past few months Ella has been eating yogurt, bananas and soft foods but getting the majority of her nutrition from blended whole foods that we feed her through her g-tube. About a month ago she started eating bites of turkey sandwiches (one of her favorite foods) with tomato soup. She now eats orally most of her daily intake of food & it seems as if every hour she is saying, “I’m hungry” (which we LOVE hearing). From peeled slices of fruit, to eggs and pancakes, this amazing child is starting to have normal diet again. Ella is able to use utensils to feed herself. Sometimes it gets quite messy, but we’re so happy with the progress we’ll deal with the mess.
Alycia took Ella back to Kaiser Oakland last week where they conducted a series of tests watching Ella swallow food & liquids. She coughs a bit when drinking water, so we have put down the sippy cup for now. She will build up her throat muscles by drinking through smaller straws and working her way back up to normal drinking. At this time she isn’t capable of getting enough fluids orally. We give her water boluses, through her g-tube, several times a day, and also feed her fresh organic veggies that we juice at home for her daily.
Ella’s hand-eye coordination is improving. She is still wearing a patch over one eye. She has double vision, especially when she looks at anything more than two feet away. We realized while reading books the other night that she can see the pictures in the books better without the patch on. Ella is drawing daily and her drawing is getting better and better, and the content of her drawings are heart warming. She loves drawing hearts, birds, fish – A few days ago she drew a scientist that makes machines. Fantastic!
Ella’s speech has improved. For outsiders it may be difficult to understand all her words at first, but she is talking up a storm like no time has passed. She is also singing and laughing everyday (which is wonderful to hear and for awhile months ago we thought we may never hear those joyous sounds again). She does get frustrated each day, which is understandable. The goal is to explain to her as much as possible and remind her that she is getting stronger and that with her hard work she will able to do the things again that she once was able to.
Ella will continue with speech therapy, occupational therapy and physical therapy. Each week is very busy with doctor appointments and therapy appointments – and all of the exercises we do with her at home. Ella is splitting her time between Daddy & Deb’s home here in Sebastopol and with Mom & Daddy Mark in their new home.
The doctors say that Ella has 12 months from the time she ‘woke up’ in December to make any progress she can. After 12 months statistics show that progress plateaus.
She is getting stronger each day. Sitting up on her own daily has helped build her core muscles. She has learned to use her hands to help balance her if she starts to fall. She now has the proper ankle braces that allow her to put her weight on her feet when she stands. Typically when we have her stand, one of us parents stands behind her with our arms under her arms, but Ella is taking the actual steps and getting her legs moving again. Glen made pancakes the other morning and spelled out Ella’s name. She loved it and then she ate it, and then she loved it even more!