Wednesday, January 23, 2013

Day 80 Fish Oil Study ~ going home soon!

WOOHOO!  Just got a call concerning our nursing situation.  An agency has committed and has 24/7 nursing care set up for Selah.  Right now there is only a 12 hour slot that needs to be filled but the staff feel that will be taken care of by tomorrow!!!!!   So it looks like we will be going home next week!  I am looking forward to the next step in our journey.  I believe Selah will get better at home surrounded by us and in a familiar place with happy memories.  We've lived in limbo for so long this almost doesn't seem real!

It will be good for my kids I've felt like the last 5 months have been a time of upheavel for them.  They have handled it well and never have complained but it will be good to get back to a schedule and a somewhat more normal life.  We should get the boys books next week to start homeschooling....LOL me homeschooling....God help them:)   Steve has to take two years of a foreign language and he has chosen Russian!  I'm excited for him and he is very interested in it.  Living for a few weeks in another country does expand your horizons for sure:) 

Selah had a great day.  She was very attentive to us it seemed every time I talked to her she looked straight at me and even followed me some with her eyes.  We had our weekly team meeting and we asked for her to continue on Ritalin.  We aren't having huge changes but there are some small consistent changes we are seeing.  She is on a very low dose of Valium so we are allowing them to double the dose for night time to see if that will affect her tone and make her looser (even doubled it's only one fifth of the dose that can be given!  very low)  It might affect her tone (for the good during the day and make her more comfortable)

Tomorrow we are taking the kids to St Augustine.  It's about 15 miles from where we are staying.  We've always wanted to take them to the oldest city in America but never had.  I kid around and say we have taken them all over the world but never made it to St Augustine:)  It should be fun and a reward for them.  The have been patient and so helpful during this time.  On Friday, Jon is doing his "rooming in with Selah" where he will do everything and I will do it on Monday. 

Today I changed her trach again and this time I did not close my eyes!

She is watching me rather closely!
 
 
 
 
Then she looked at daddy when he was talking to her
 
 
 
This week the trach change was easier for me and it doesn't bother her one bit.  She doesn't wince or act like it hurts!  If she did I couldn't stand that!!  I'm glad I could push past my fears and do the trach.  I have NEVER had anything bother me anymore than the whole trach thing....but I need to be able to deal with it.  It's just funny because it's NOT like I've never dealt with medical stuff LOL!  Sam came home on three machines and had eye surgery within his first month home but he never was on a trach.  Nothing else is as hard as that, I think it is the responsibility of her airway.....that is scary!
 
I don't know if this is much of an issue now since we are leaving next week but if you are interested in donating Marriott points towards our stay here you can contact Bill at wbehrens@comcast.net  and he will tell you how you can do it.   Thanks
 
As always thank you so much for your thoughts and  prayers for Selah.  I really appreciate each one of you!!!!



10 comments:

  1. Such great news, Yvonne!!! SOOO happy for ALL of you!!! Way to go with the trach too! :-)

    Funny thing...after Sarah's few weeks in another country, she is going to be studying Russian too. She's going to start w/ Rosetta Stone and then take an online class thru Landry Academy next year. What is Steve going to do? It will be challenging for all of us I'm sure!

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    1. Steve is using Rosetta Stone also! That is what his school uses and the homeschool program too. You know the thought went thru my mind wondering what Sarah would think of it:) So cool that she is doing the same thing! Traveling is really good for teens it opens their eyes for sure!!!

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  2. What a happy post! Thanking God now for the provision of the 24/7 nursing and for your growing confidence during the trach change.

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  3. So rejoicing with you on your pending homegoing!! I so look forward to each post you make. My days aren't complete without checking your blog for a new post. I know you keep your blog for you, but thank you for letting us in on your real life. It motivates me to 'keep it real' as well...in the highs and the lows. In a sense, it's rather like a 21st century 'Pilgrim's Progress' . Don't know if that sounds like a compliment or not, but it is intended as such. :)

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    1. that is a HUGE compliment!!!! thank you:) Thank you for caring!!!!

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  4. oh Have Fun. Saint Augustine is 45 miles from me and I go every chance I can. It is just an awesome place. do take the kids to the carousel/park it is only dollar per kid to ride parents ride free. It is my 2 boys favorite part of the trip . It is open during the night also and is so pretty at dark. lol just a suggestion. glad she will be going home soon. will keep praying.

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    1. It's been years sine we been (befoe kids LOL) I didn't know they had a park they will LOVE that! thanks for telling me! Jon and I went for a few days right after we were married and loved it. I can't wait to take them to the fort! It's going to be fun for them

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    2. This is the address for the park
      Davenport Park
      180 San Marco Ave
      St Augustine, FL 32084

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  5. Amen!!! So glad about the nursing care, Selah's alertness, and your success and increasing comfort with the trach change! :-) How wonderful that you will soon be moving home for good!
    LOTS of love and prayers for all.

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  6. Woooohooooo!!! So happy for you all!!! Praise God!! I'm excited for you :) I can't go to sleep at night until I check on you guys & read your blog. So glad to read this news. Can't wait to see what's next! I think she's going to do so good at home. I can't wait to hear how she reacts when you guys get to your house! I'm so glad for all of you but your kids sound like they have been so so good through all of this, it's great to hear they will all be home together again. I can just imagine how they are going to feel inside when they get there! Thank you so much for sharing this with us!

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