Friday Update

I'm sitting here trying to update, but I don't know what to say. On one hand so much has happened, on the other hand, it is starting to feel like boring old life to me.

Eleanor is still doing as well as she can be medically. She has been to the surgeon and to the ear, nose, throat (ENT) doc. They both say she is doing fine.

Hearing: The ENT checked her ears again and said there is nothing anatomical that is affecting her hearing (no fluid, malformation, etc). He said she will be retested for hearing around the first of the year. If she fails again, the next step would be hearing aids. If she doesn't show significant improvement with the hearing aids, then we would start talking about cochlear implants. That's all down the road though.

Neurologist: this week we have an appointment with the neurologist. It is one appointment I have been "looking forward to" because we will hopefully get some test results back for the metabolic testing. I guess there is also a chance they will have info on the skin and muscle biopsies. I am eager for the neurologist to see Ellie, and the little improvements, to see if they say anything about her future.

One of the big improvements we have seen in Ellie is her facial muscles. For the first month of her life, her face seemed completely paralyzed, and she did not open her eyes or move her mouth. Now she will often startle and open her eyes out of a dead sleep (though she still sleeps way too much). She is also opening and closing her mouth/jaw very often, and has recently shown signs of sucking. I "nurse" her quite often, and she will take a few sucks before tiring. (She is not sucking hard enough to get any milk though).

Cranial Sacral Therapy: This coming week we will have an appointment to see a Cranial Sacral Therapist. We are going to start pursuing this and potentially other alternative methods since at this point conventional medicine has nothing more really to offer Ellie. We will be using some of your generous gifts to try these methods for Ellie. Thank you for your help!

Night Nurses: a lot of you ask how this is going. It actually is going quite well. We have two steady nurses that are really kind and quite meticulous. I am comfortable leaving Ellie with them. It is disturbing how easy it is to say goodnight and escape upstairs sometimes-- and then I feel guilty for that too!

The boys: The boys are adjusting quite well, similarly to how they would if any new baby joined our family. Noah wants to touch her all the time, and Seth wants us to put her down and pick him up! I do think Noah worries about her though but doesn't always know how to express it. He talks a lot about "can we keep her with us forever?" and told me he had a dream that Ellie had to go away, and we got a different baby. I think her time in the hospital really affected him.

Things are actually going really well with school for Noah. He has finished the preschool handwriting book in good time, and we will be moving on to the kindergarten one. He is also loving his math and will exclaim "I learned something!"

Adam: We are so blessed that Adam has such a generous and flexible employer. He has been able to come with the doctor appointments and is quite involved with Ellie's care. He loves to do her physical therapy and is often seen on the couch or floor exercising her arms and legs.

Me: This week was much better as I had some visitors, some doctor appointments, and some opportunities to get out of the house. It will be a long winter, but we hope it will be worth it when we all make it through healthy.

Okay, so I guess I had a few things to say! Thank you all for your support and prayers!
Love,
Emily