Tired Tire......

 

Yesterday I took the kids to see Despicable Me 2.  It was so stinking cute.  I laughed a lot and embarrassed my kids:)   Sarah loved it, every time it would get loud she'd clap and scream with joy.  She amazes me how nothing scares her and how she faces life....a little blind, delayed girl who spent her life belted to a bed....she lives it to the fullest now. She amazes us and we adore her.   Actually she is starting private swimming lessons at the end of the month at the Y.  She loves water and has no fear.  We hope that she will learn to float, it is a great protection, especially living in Florida. 

 

We took some cute pictures by the Monster's University stand.  That was a great movie too. 

 

 

 

Sam and Mommy

 

Sarah and Mike Z:)  Having just one eye ROCKS!!!

 

See Shad is holding the drinks and popcorn:)

 

Shad is back to normal, no pain or problems!  He is thrilled to be through it and not have to deal with any more pain like he has had all his life!!!!!   Again I just have to say, get your boys circumcised young, I've met so many families who boys' have had issues.  Shad's issues were because he was not taken care of when he was little.  He probably had so much pain since he had the issues he has had but it is all over and he is really happy. 

 

So in addition to my morning yoga class, I've started 3 days a week going to a water aerobic class...for seniors....the first day I watched the big clock outside wondering when the older lady  who is the teacher would let us stop.  I thought I was going to DIE!  LOL  My classmates in there are more friendlier to me.  The nice thing about water aerobics is if you don't' do something right, if you are deep enough in the water, no one can tell LOL. Yesterday I was hurting before the end of the day and having to take Advil:)  But it's a good hurt.....

  The classes are early and I get home just when the kids are getting up.  Perfect for the summer!

 

Today was an adventure.  I went to Lakeland to meet a friend for lunch.  As I was driving, a guy kept gesturing at me.  My tire was flat!  The light had come on, saying it needed some air but Jon had put air in it and it had been fine, but the light hadn't gone off.  He had checked it a few times and it measured fine so we thought something was wrong with the light.  Thankfully this happened right by a tire shop, a nice one, Imperial Tires on South Florida, good folks.  They got the nail out of my tire for me and in the meantime, my friend picked me up, we had lunch and my tire was fixed.  Then I went to another friend's house and she LOADED my van with clothes for the girls!!!!  (that was my reason for going to town!)  WOW I am still going through everything!!   In the meanwhile Sarah's closet rod broke....BEFORE I even put in the new clothes LOL 

 

Selah had a good weekend, no issues at all.  Today after she was on her stander, right when her afternoon meds were due, she started to have a storm but our nurse bent her at the waist, and rubbed her back (we call him the Selah whisper) and she calmed down, and only needed her regular 4 pm meds!  WHEW!  She has a very busy day tomorrow, with speech therapy and then a doctor's visit in Tampa.  We are hoping she will do ok.  It is so hard to transport her. 

 

She is seeing a doctor about Botox shots, don't know if she is going to get them as she has improved so much but we have had this appointment forever..... so we are going!  It's taken SIX months to get in there!!!  He is supposed to be the best in this region with things like that so he may be able to give us some input. 

 

I was telling my friend today how everyone remarks about Selah's skin, bones, body fat and muscles....they are great and it must be very unusual for children like her to be in such good shape.  Several people who work with her think it must be the fish oil keeping everything so normal.  If you saw her little body, she looks like she could just get right up and walk, no muscle atrophy, full, soft arms and legs....  she does stiffen her legs when she gets upset but her range of motion is normally great.  Our Physical Therapist said that she might even could be backed off the Bacfine (it to keep her loose...but she is doing so good and things are very different than when she came home)  Most people in Selah's situation is given the max doses age and families are encouraged to have an internal pump of Bacifin put in the person's side.  We were offered it and we said "no"  I had read enough about it to know it was NOT a good thing.   So glad we did not do it!!!   Thanks to all the therapies and the nurses, and most importantly being HOME, has helped her so much!  I'm so thankful!

 

And I still have the HOPE that one day she will be healed and shock us all:) 

 

Don't forget about our Orphan/Adoption Fund raiser!  I'm going to blog about that separately tonight! 

 

 

Please keep praying for Selah!