Hello friends!
We have been wanting to send out an update for days... we get to the hospital early and the hours just slip by. We are having a wonderful time with Elida - watching her grow and learning more about her every day. She is such a darling little girl - by the time we drag ourselves sleepy eyed back home, all we want to do is look at photos of her and think about tomorrow.
A lot of you have asked for more details so you know how to pray for little Elida... so here goes!
The wonderful news this week is that we got her Genetics study back and everything is completely normal. We were not expecting to get this news so quickly. Needless to say - it was a HUGE relief. We do not know if there is a plan to continue on with the neurological and muscle studies - from what we have heard we are just going to see how her body grows and how she responds to the occupational and physical therapies.
Elida also had a swallow study done this week and this news was not as positive. She has a weak swallow that allows for pooling above her trachea. She -from time to time- will aspirate (liquid gets into her lungs) and this is not good. She is now being feed via a tube that will stay there until she is big enough for a simple surgery that will put in a more permanent feeding tube for her to use for the first 12-16 months of her life. The thought is to give her a safe way to eat/drink while we work to strengthen her swallow and reduce the pooling/aspirating.
She must gain at least 2lbs before they will perform this surgery. Waiting for this surgery is the only thing that is keeping Elida here... we want to make sure you know that she doing well enough to go home in every other aspect!
Just to recap about her contractures. We have begun working with an orthopedic surgeon. Elida has what he calls a very mild case of arthrogryposis (this is what is "causing" her contractures). He is very positive about her ability to heal and grow appropriately. His current concern with her is to get her hips in their sockets (they are shallow) so she is now in a harness that will hold them tight for a week or two. This means that we have to put some of our physical therapy on hold until her hips heal, but everyone agrees this will not set her back and is well worth the time to be sure those sockets are working correctly.
Another thing about her contractures is that they make her joints very tight. We are working with a physical therapist to help her gain what he calls "muscle memory" - her muscles need to learn that they can be in different positions and we can help to loosen her joints and muscles with very simple exercises. However, this tightness does make her body a bit fragile. Mid-week her right arm was broken at some point (we do not know how) and so she has a little sling holding her arm to her body. The wonderful (and miraculous!) thing about newborn baby's bones is that they heal without resetting. Our orthopedic surgeon has assured us that it will heal in a week - unbelievable.
Our occupational therapist has made a splint for her left arm (and will make one for her right as soon as the break heals). She wears this three hours on and three hours off for the course of the day to loosen and lengthen the muscles ; again - this is all about muscle memory. We have continued working with the OT on oral exercises to help Elida to have a stronger suck and swallow reflex. This is why you will see lots of photos of us putting our fingers in her mouth!
Elida is now back to her birth weight and gaining every day. We can tell she is getting stronger... and happier and more alert all the time. For as much as this little lady is up against right now - she has the most pleasant disposition and seems to take all the splint/sling/harnessing business without too much complaining. She is the most content when we are holding her - which is all day every day if we can help it!
We reassure ourselves daily that she is right where she needs to be - getting stronger and getting bigger - until we can take her home. We are thinking this will not happen for another 4-6 weeks.
What we pray for the most is simply her continued strength and growth! Again, I will say - she proves to us constantly what she is capable of. She reassures us that we can be confident in her ability to heal - it is our job to simply believe in her and have hope for her.
THANK YOU - from the bottom of our hearts - for joining us in this hope. We can feel your love and support. You have - with your thoughtful emails, text messages, meals, and messages - created a resting place for us. We feel very blessed.
Love from Elida, Seth and Amelea
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