sittin' pretty

Little lidey sat up - all on her own - for over 4 minutes this weekend! She concentrates so hard, and can hold her balance. Our girl is getting so strong - way to go Elida!

this weekend

looking outside... on this sunny afternoon.

Progress!

Yesterday Elida ate 30 ml (this is 1oz) of milk - tiny bites - and loving it! This is amazing progress... and is such a hopeful sign of things to come. The stronger her swallow gets, the more she is able to eat. We are so proud!

happy girl.

repeat the sounding joy.

happy holidays friends of ours.

elida is doing so well - getting stronger and more darling all the time.

we feed her little bites of thickened milk. in a week or so, we can start two short feeds a day. slow progress, but we are encouraged none the less! elida has also had good reports from her orthopedic surgeon (hips and bones are looking a okay!) yesterday, she got her first tooth. AND she can hold her head up on her own, which is transforming our lives - and hers - you can see how proud she is of being able to look around.

there is nothing quite like having a wee babe around for christmas. we are loving every second of it - even when the future seems unclear or scary. in each small moment - there is so much joy.

so to that - we say - repeat the sounding joy, repeat the sounding joy.
elida seth and amelea 

we celebrate!

almost 6 months.

HELLO dear friends of Elida.

It has been a busy couple of months since the last post, I am quite sorry to keep you in the dark about her progress for so long! Just because there is SO much to share, I am going to resort to bullet points. (I promise not to make a habit of this. Honest.)

• Elida has started FEEDING THERAPY! After a semi-successful swallow study, we can now begin very small feedings by a bottle. Last week Elida drank 4ml of milk - with no coughing or gagging! We both got a little teary eyed - we are just so proud of her. She has already come SO far... it is just thrilling to begin working on something that will be so very important in her future. 
• Elida does NOT NEED HIP SURGERY! Praises be... her dislocated hips are healing on their own (with the help of a brace she wears while sleeping at night). We could not be more excited about this news, it spares her from 2 surgeries as well as 6 months in a full body cast, oh my.
• Yesterday, Elida started playing with her toes. He he, I just had to put this in - because it is so dang adorable. 
• We got the further testing back from The University of Iowa. It showed that the root of her disorder is in the make up of two different types of protein in her muscles. This does not really tell us a whole lot more about her prognosis - HOWEVER - we learned that this type of disorder is not degenerative. Though we still do not know how strong she can get, we do know that what strength she gains is hers to keep. HOORAY - there is so much room for hope and faith in this!
• Her occupational therapist is now "taping" her wrists, fingers and diaphragm. After just a few days of having her tummy taped (you can see a bit of the bright pink tape in the photos below) she started talking so much more - the tape keeps those muscles engaged - the results of which are incredible. Seth says that she "has really found her voice" - has she ever. In the past week she has begun to giggle a little bit too. Elida continues to be such a happy little lady.

The unbelievable progress that Elida has made in the last 6 months deserves grand celebration. We hope you will all take a moment to feel the goodness and delight that we feel - and raise your glass to hope and her continued healing and strength.

Thank you for your prayers, well wishes and friendship. 

Sending love.

4 months old!