Wednesday, April 2, 2014

St Leo's University

Integrated manual backup systems is the answer today!
http://www.mobilityawarenessmonth.com/entrant/selah-clanton-zephyrhills-fl/
We're at 5985.......  please vote!

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http://www.gofundme.com/78kap0

I'm excited about the responses I've gotten thus far for Sonya!  Two people emailed me to let me know they are writing checks to send for her.  You can give through the church
Grace Church
7060 Berry road
Zephyrhills Fl 33540 
OR
you can give directly through their site  http://www.gofundme.com/78kap0
Whatever comes to the church in this month Marked Sonya or Orphan fund (she is not an orphan but that's how we designate the gifts that come in through the website)  will be given to them through their website at the end of the month.  Their site is set up to receive Euros and the exchange rate is about 72 Euros for $100 dollars.  I love to see the increase from 11,000 something last night to 12,940 tonight!!!!  I read that there is a German charity that might help them IF they can get to the 25,000 euro mark......They are more than halfway there:)  Please pray for this little girl who lives in pain, pray for her parents who are strong for her......

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The last few days we've gotten increasingly worried about Selah.    Her heart rates were up all the time (100-110), and would spike at times (up to 150-160).  We had been told by the doctor it might take some time for her to adjust to not being on the heart /blood pressure meds but as time went on we knew she was struggling.  Her BPs have been picture perfect, just her heart rates too high.  I called the doctor yesterday and he advised us to put her back on one of the meds, Atenaol (probably spelled wrong)  She had a dose this morning and today has been great!  She still is a little high (highest 90's) but Atenaol takes time to build up in the system.  At least we are on the right track again.  So she can manage her blood pressures just fine, but the part of her brain that manages the heart rate, is just not there yet.   It is discouraging to go back on any medication but it certainly has solved the problem.

We've added Mirelax to her feeds and she has been having nice poops:)  We've also added Pear juice to her daily intake of fluids.  The GI said it causes less tummy upset than apple juice.  The ONLY place I could find pear juice was in Publix in the area where they have foods from other countries, it's a Goya brand.  

This morning Selah was lifting and turning her head so nicely.  I LOVE when she is more aware.  She also turned towards me and her nurse Aaron everytime we called her name.  Sometimes it would take a few seconds for her to respond but she was doing it every time.  

I'm so thankful that we are able to ensure she gets wonderful care.  She has so many services now that come in the home, her nurses are so good and focused on her, we have the best set of doctors for her.  It's been a fight and I'm sure we will have more but things right now are just great!  Now we just pray for more progress.  We had NOT given her the new med that could stimulate her mind more, her heart rates have just been too high but if things continue going good & normal, maybe we can start it next Monday.  It is a drug that has added some patients in having more awareness.

I had a fun day, one of my friends and her son came over today.  Her son helped Steve on the church lawn and his mom hung out with me.  Friendship is so refreshing.  We both have a child with  very special needs and we understand each others heart.  We were going to pick up Shad from school and a song came on the radio and we were singing it together, KNOWING what the other one was thinking.  

https://www.youtube.com/watch?v=WnDTDLOM0rY&feature=kp   

Yours will be the only Name that matters to me
The only One Whose favor I seek
The only Name that matters to me
Yours will be
The friendship and affection I need
To feel my Father smiling on me
The only Name that matters to me
Yours is the Name the Name that has saved me
Mercy and grace the power that forgave me
And Your love is all I’ve ever needed
When I wake up in the Land of Glory
And with the saints I will tell my story
There will be one Name that I proclaim
Jesus, Jesus, Jesus, just that Name
)Music & Lyrics: Benji Cowart)

the highlighted lines gets my heart every time!  
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Tonight I'm hanging out at St Leo University while Steve is at a youth event.  It was a little far for him to drive by himself, since he has only been driving for 6 months!  My husband went here for awhile back in the 80's while he was pursuing a Criminal Justice degree.  It is a GORGEOUS campus!








Darth Vader at the library?








here is Shad from a couple of nights ago.  he was sitting on my bed, watching tv and petting the cat, both he and the cat fell asleep.  he slept through us taking pictures and laughing.  I have never seen anyone so young sleep like he does.  It is so funny!


Take care and thank you for your prayers and support!




2 comments:

  1. Did you look in the baby food section for pear juice? I used to buy the Gerber brand for my kiddos. Might be more expensive though. I am voting every day!

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  2. I don't know whether to say "Oh how sweet!" or "Oh that poor kitty!" LOL And I thought the comment about Darth Vader a split second before I saw your caption. Hahaha.... Thanks for the joy this evening.

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