Busy day- one year ago the boys meet the girls....Pictures and videos of a wonderful day!

Well Sam is taking center stage around here right now:)  He is pain free although he seems a bit more grumpy than usual (for you all who know Sam...you know how he is not afraid to let his feelings be known LOL)  But he is ok.    After much discussion, everyone feels like it will be ok for us to wait until the first of May to go to NY.  Selah has several appointments I do not want to miss as they would be hard to reschedule.  We also need to get a night nurse started so Jon will have help with Selah.  It looks like one of my friends will be going with me.  That way Jon won't have to miss work.  Steve is capable of taking care of Sarah and Shad and of course we will have a day and night nurse for Selah during that time.  I'm planning on taking the train:)   I certainly don't want to drive all that way and to be honest I am just not up to flying.  In booking flights for my brother in law who came up and stayed right after the accident, I found that only commuter jets go into Rochester from Florida!  I'm too afraid I'd have a stinking panic attack and they'd call the FAA on me!!  LOL  There are no direct flights from this area, we'd have to fly into NYC, Philly somewhere and then transfer to a small plane....NO THANK YOU!

A few weeks ago I was honest about having a panic attack...a REAL one, really thought I was going to die.  Since then, I haven't had one but have almost had a couple.  I can now sense them coming on and I try and remove myself from any situation that is causing it.  I've found I can't watch anything on tv that is stressful.  Duck Dynasty and 19 Kids and Counting are about the only thing I can watch on tv.  (and I hate 19 kids and counting LOL)  I'm even being really careful with what I'm reading, I love mysteries but find I can't handle anything unless it has alot of humor in it.  There's only been a few times I've had to take my "happy pill"   A few days ago I was at Lowes (one of my fav places - the garden center) and felt one coming on,  I knew I needed to get home so I did and sat outside and relaxed myself and then was ok.  It's funny I've not had one about Sam's eye....I probably will once it is all over.

BTW, I wanted to explain a bit about Sam's eye.  He had corneal transplants (from donors) when he was a baby.  His body rejected them.  When he was three we took him to Dr A and he had corneal IMPLANTS or the Boston Kpro.  We knew that his left eye, the smaller eye already had some issues but we had nothing to lose to try the Kpro on it.  While the right eye has done well his left eye hasn't .  Soon after the implant, his left retina detached   It was not unexpected.  That means he has no sight in the left eye.  In fact the eye probably started to die.  His eye certainly has shrunk over the past 4 years, obviously so.  The implant being man made has not shrunk.  So now it is too big for his eye.  That's why I think this is happening.  We won't know for sure until we see Dr A but that is my thoughts.  The implants were still the very best thing for his eye and we are thrilled with the results in the right eye.  but kids with Peter's have "sick" eyes , their eyes are weak and often missing some parts or some parts are deformed like Sarah's retina and optic nerve.    Just wanted to explain some of this.....

Also back when we were in NY, Sam hit his bad eye on a prong at a store and that may have contributed to this.

Selah is doing great, she LOVES that wheelchair!  As soon as she is put in it, her heart rate goes down (and it's been fine anyhow) and she is just amazing relaxed.  It actually fits her perfectly and helps her body.  Her knees are bending so nicely and her feet look perfect.  She seems to not have any muscle spasms unless she is really being stretched out by the nurse or therapist.  But even then she responds well.  She is able to go outside now several times a day and I'm a real believer that kids should be outside.  I know that helps her.  Last night she had heart rates in the 60's!!!  PERFECT!

At night she makes a gurlgy noise in her throat/trach when she needs to be changed.  She does it consistently every night!!!  Is that amazing or what????  It's not a crying noise more like a gurgle but it's not like she has a problem with her trach.  Sometimes she has to have it suctioned out and sometimes she just quits when one of us comes in.  It's really her way of communicating and I'm so thankful for it!!!!!!!!

If you've wondered about my neck, I have to tell you since around Easter, it's been somewhat better.  I really started back walking last week and honestly I can tell a big difference.  It's not quite normal but on a scale of 1-10 with 10 being how bad it used to hurt, it is down to a 3!  After months of being in excruciating pain, this is just great!  Except for the last crazy year of my life, I've been a big walking fan for about 4 or 5 years, during that time, I've stayed pretty healthy, not even having many colds.  Walking, in my opinion, is one of the best things you can do for your health and body.  I'm not in perfect shape but I've kept my cholesterol and sugar perfect (well as of last year...)  my legs look pretty good and it just makes me feel good.  Since I've started back walking, I've felt my stress level drop too, big times, despite the fact the last two weeks have been very stressful, first with Selah in the hospital and now with Sam's eye!

Today was a gorgeous Florida day.  After I went walking, I went back to Lowe's and got some more plants for my garden.  I actually lost a few plants in the freeze we had in March.  Well I weeded all 13 beds and got sunburn on my legs!  It's gonna be a Noxema night!  (yes noxema takes the pain away and helps me not to peel!)  My legs are on fire!  My garden looks perfect:)  Then we had a nice steady rain late this afternoon, just perfect for my new plants:)  Gardening is also a stress reliever for me!



------------------------------------------------------------------------------------------------------------------

A year ago today we took Sam and Steve into meet the girls.  Now I have to say i wa a bit afraid of exposing Sam to germs as he has a low resistance and when he gets sick, he often needs to be in the hospital so it was scary to take him in.  But we wanted Steve to experiences the institution  for many reasons and to be able to bond with the girls.  It turned out to be a wonderful experiences.

Here with are with Director Alexander, who was very kind to our children

                                                                                   

Sam meets his TWIN Sarah!

  

We have twins:)

I love how Sarah looks at me

George our facilitator and one of the older girls

Sam with his booties on

Sam meeting Selah

Selah was more interested in the string

CUTE

Selah was not too sure about this boy

this young lady had grown up in the instituion.  She was over 16, too old for adoption.  Nothing was wrong with her except her legs.  She was in Selah's room and took care of her like a mama.  I think this young lady really helped Selah and kept her sane.

Sarah was starting to roll on the floor, showing more life!

Steve and Selah

Sarah Steve and Selah

Steve with all the little ones LOL....

A baby for everyone!!!!!!!

Sarah and daddy

SWEET boy....he wanted a mommy and daddy so much!

Selah with her angel!

Sweet girl...she is now adopted and home!!!!!!!!

Steve and Sarah  our oldest and youngest together

God bless this girl!

Some of the children...the girl in purple has been adopted:)

we had a full house that day

this sweetie is home now in America too!!!

Loved this little guy wish I could find him a home

hopefully you can see this video.

Lots of pictures tonight.....remembering a wonderful day.....just wish I could go back a year ago today....