Friday, March 1, 2013

Day 117 Fish Oil Study ~Lots of stuff!

Whew what a story I have to tell....

So all day yesterday Selah couldn't keep her oxygen levels up stable.  For some kids that is nothing but since she is normally so stable in that area, it was odd.  Then around 6:30 the day nurse took her Bloop was awful, she called me and I thought surely it was wrong and she took it again 135/124!  A
She told me to call 911 as she gave her her BP meds and hour and a half early.  Within 5 minutes Selah was in a normal range, the EMTs came anyhow and checked her out.  At that point her BP was like 99/68 and her blood oxygen level was 100%.  So they left and immediately her oxygen levels dropped again.  I don't think the day nurse really wanted to leave us but she did around 9pm.  From that point on Selah totally behaved!  I sat in her room until midnight and she was perfect, she went to sleep, everything was perfect.  Then we went to bed and checked on her a few times during the night and she was great.  All day she has been fine.....  Yesterday we did have a nurse who only comes once a week and she is more hands on with Selah.  Maybe Selah was just really annoyed, I don't know but she has never had a problem before like this.  Who knows?  It did freak me out a little but I thought "oh well we will just have to deal with this!"  And then she calmed down.  I really thinks she likes just having us with her at night. 

Today she had physical therapy and did absolutely wonderful, great range of motion and she seemed happy or at least not upset by anything. 

Then we had a Pre Op appointment at St Joe's for her surgery on Tues.  She had to have a blood draw and let me tell you what she did......  She turned her head and eyes right towards the person trying to do the blood draws.  They had plenty of trouble and had to try both arms and she turned every time!!!!!!!!!!  That is another HUGE thing.  The "rehab" hospital was so negative about Selah's awareness, we were told she draws away from pain but she doesn't try and find out where the pain is coming from...well she does now and did it repeatably throughout the afternoon.

She also has been moving just ONE hand or the other at times.  That is a very good thing.

Also on the way home in her car seat, she let her head sag and then brought it up on her own!!!!!!

Last night we put the blue tube humidifier on her.  It is the long blue one that you might have seen on her during pictures at the hospital. I laid it down the center of her chest and out towards her feet.   I came in to check on her and she had her left hand wrapped around it!   That had to be purposeful movement because I left her arms at her side. 

We see the ENT on Monday.  He will be following her for her trach and we are going to talk to him about getting her OFF of it!!!  She is swallowing daily throughout the day like she did in NY.  We don't put any liquids in her mouth since the "rehab" stopped that and we don't want to introduce it again without someone who is used to working kids off of trachs being with her.  But now if I just wipe out her mouth, she swallows most of the time!  She swallows spontaneously throughout the day and we all love to see her do it.   Hopefully he can sit us up with someone who can work with her to work her off the trach! 

So we are seeing some really good things and are extremely thankful for each one of them!!!!!  Please keep praying for our sweet Ukraine Princess!  And thank  you all for your sweet messages!  I read all of them and they are very uplifting! 


  1. I love reading about how Selah is progressing--and yes, it sure does sound like progress to me!! AND I love how it makes me so excited to praise the Lord...yet again...for His presence and faithfulness!! Thank you for sharing!

  2. I just read your update today, and the kids, my husband and I are happy for your good day! Hugs to you from Indiana!

    janet and gang

  3. That's great that she's showing more purposeful movements and swallowing! I'll be praying that she can come off the trach soon!

  4. Such INCREDIBLE news!!! I am so happy for Selah and your family!!!

    Though I have no experience whatsoever...I think that "rehab" hospital is a crock. Keep trusting your heart!!

    Praying for her surgery Tuesday xoxo

  5. What great news! You, Selah and the rest of your wonderful family are always in my thoughts, i read you blog every night before going to bed and am always so relieved to read about all the progress she's making. I trully believe that it is much better for her to be at home along with the rest of the family instead of in a hospital. This is the first time i comment on one of your posts but i just wanted you to know that someone in Belgium thinks of you and your family everyday. Lot's of love from Brussels.

    1. That is so cool! thank you! Love from Florida to you too:)