Monday, March 25, 2013

Monday Madness


Starting this Monday and every Monday until this little girl comes home, I'm going to feature her!  This is Patricia who we met and fell in love with at the girls' institution.  We called her "Sally" in our minds.  The first time I saw her, I anxiously asked about her adoption status...was she available for international adoption?  We were registered for THREE kids (just in case) and I'd love to have added her to our family.  At the time there was some confusion about her status and things weren't clear until after we'd gone to court.  By that time, we couldn't start all over again.  We had hoped to go back for her but now that would be impossible.  A sweet family has stepped up for her and we are so very thankful!  This family may be going within the next two months and they really really need help in raising their support.  You can give to her grant at  just go up to the GIVE section, click on there and the section that asks what the gift is for, just write in Patricia.  I know I present many needs in my blogs BUT it gives YOU the opportunity to be involved with actually helping REAL orphans get REAL families!   If you can give, even if it's just a few dollars it will help her!  I'd love if you'd give in honor of Selah and Sarah.  Thank you!

Today was a banner day for Selah!!!!   She had PT and worked OUT, then her nurse worked with her for hours.  She actually was making some "purposeful movement" with her left hand/arm.  The nurse was so excited she came and got me so I could see.  It almost seemed like she did it on command.  We haven't seen this type of movement much at all and it was thrilling. 

On Saturday night she had to be suctioned (we thought ) several times.  She made a noise so we'd get up but as soon as we took her nose off (the cover of her trach) the noise would stop and there was nothing to suction.  The whole time her oxygen rate was 99-100% so we didn't have any concerns.  It was just odd.  Well when our nurse came in Sunday morning, he noticed her "nose" (the cover) was all gunked up and she was not getting any air through it.  That means she was having to breath through her mouth/nose which is great!  I felt really bad about not checking the "nose" but then I remembered both of the hospitals she was in each had a time when her trach was clogged up completely and they found her breathing through her mouth/nose on her own.  It is a REALLY good sign that her oxygen levels stayed normal and she was not straining or upset at all.  It shows again she is a great candidate to come off of the trach. 

Today I called several places to try and find a speech therapist who is qualified to bring her off of the trach.  It looks like we will have to drive her to Tampa to St Joe's for the therapy.  I'm thinking we'll do the HBOT (which we are still working on setting up) first since it is for 20 straight days 2x a day and then do the ST to work her off the trach.   Selah has lots of things in her future:)

One week from now the casts will be off!  she is to the point it doesn't seem to bother her much!  We hardly give her the Tylenol w/codeine but we are still giving her the Valium until next week then we will wean her off again.  I like her to be as free as possible from drugs. 

Thank you for your prayers for Selah.  I blog daily and mention all the things good and bad so I have a record of everything.  I'm very realistic about Selah's progress, I report what happens.  I don't get really excited until she has consistency, that is the KEY!   She has had two other times when she was doing some independent movement like this, that clearly was not "postering" So please keep praying for my sweet little girl! 

And I'm proud of myself, I finally got the girls' paperwork for school and for Children's Medical Services done.  I also had to reregister Sam in school also as they had unenrolled him.  He was on the home bound program.  I expect the girls will be on the home bound also.  I'm not a fan of public school espicially with children who can not tell me what is going on with them!  That mountain of paperwork was stressing me out!  So glad it is done!!

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