Friday, November 20, 2015

Two!


Nora turned TWO yesterday!
We cannot praise God enough for all that He has been doing in Nora's life.  God is so good!  Nora is doing so well. She is eating more and talking more every day.  She has endless energy, and loves to dress up in frilly dress-up dresses (with as many accessories as she can find) and dance and sing.  She would stay outside and swing all day if she could.  She is a very good mommy to her dolls and stuffed animals. She pushes them around in the stroller saying, "Beeeebee, beeeebee, beeeebee!" She loves to color, and likes to try to trace other people's hands, if you don't mind a few accidental stabs from the pencil:) If she sees someone wearing a hat, she must go find one for herself. One of her newest tricks is putting her HME on (the little white thing at the end of the trach that helps with humidification) It is so cute to watch her little hands work. I just love that child. 
One can never have too many accessories!
In October, Nora had bleomycin injections in the floor of her mouth and in an area near her lungs. We were able to have this procedure done here at Children's in Milwaukee-it was really nice to not have to travel!  Everything went smoothly, and she will go back to be checked in a couple weeks to see if they were effective.  She had her hearing re-checked a few weeks ago, which still showed a 30% loss.  It's better than it was, but they still want her to wear the hearing aid to help with her language development.  She also had her eyes re-checked, and the Dr said there isn't anything too concerning for now.  Her eyes wander occasionally, but it's not bad enough to do anything right now.  So that's nice that we don't have to go back to patching her eyes.  Nora is not a huge fan of that:)  Her ENT was very pleased with how she is doing when we saw her last week, and she also got a big thumbs up from pulmonary.  I can't remember what other appointments she's had recently, but the main point is that all the doctors are very happy with how she is doing! And we are too:) God is so good!
What a difference a year has made!  Although she is still as bald as ever:)

Nora goes to speech therapy once a week and her therapist has also been happy with her progress.  Nora loves speech therapy, because she gets to play with all kinds of new toys:)  She has been wearing the Passy Muir speaking valve for a little bit each day.  The valve allows air to go in through the trach, but then redirects it through the vocal cords and makes it easier to make sounds.  She will gradually increase the amount of time she wears it.  It's so funny to watch her when I first put it on-she gets this funny little smile and tries to blow it off (stinker!) and then laughs and starts jabbering.  She makes me smile so much:)  Once she is able to tolerate the speaking valve for longer periods of time, we can start talking about capping the trach.  Capping is basically putting a cap over the opening of the trach, which would allow her to breath in and out through her mouth/nose. Capping the trach is a step towards getting it out.  I couldn't believe I was even having that conversation with the doctor! Before Nora was born, we were told that if she survived delivery, she would most likely have a trach for life.  God is so good, I could cry.  

Aside from all her challenges, Nora is a very typical two year old, complete with the "terrible twos" temper tantrums (This particular one was on her birthday, because I made her put on clothes:)  

Nora's next surgery isn't until the beginning of January.  This is the longest break she's had, because I didn't want to schedule anything close to the holidays.  It's been really nice to not have to think about that for now!  It's been a really nice break.  She has been really healthy lately.  I haven't kept track of how long, but I know it's the longest she's gone without getting something. We are praying that this good health streak will continue through cold and flu season! 

Another one of Nora's favorite pastimes is sitting on the potty chair.  I am not even thinking about potty training at the moment (my least favorite part of parenting!) But I do let her sit on the potty when she asks, and she has gone few times! 
Looking back over the past two years, we have so, so much to be thankful for.  God is so good.  He has done amazing things in Nora's life, and has taken such great care of our family.  Thank you to all of you that have been that hands and feet of Christ to us these past two years.   We are so grateful for all of you faithful prayer warriors and supporters-we would not have made it this far without you! There are no words to fully express our gratitude and appreciation.  We are so blessed.  God has answered (and is continuing to answer) the many prayers on Nora's behalf.  I am constantly amazed at God's power and might as I watch my silly little girl do all the things we thought she may never do.  God is so good!   And we are excited to see what He has next!

5 comments:

  1. We are so happy for Nora and her wonderful family! Our prayers for her have not stopped since your first request. Have a wonderful holiday season!

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  2. We are so happy for Nora and her wonderful family! Our prayers for her have not stopped since your first request. Have a wonderful holiday season!

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  3. Beautiful girl, God is so good. Your an inspiration! All the love sweetie ♡

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  4. Thanks so very much for the updates and pictures of Nora. Prayers continue; she is looking so much better after surgery. Praise God for her drs., your loving care, and God's healing.

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  5. Thank you for this good update. Wonderful progress. Praying all goes well in January. May you have a wonderful family Christmas.

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