Pictures!

Last weekend on our way home!

 

 

 

 

 

 

Sarah....

 

 

 

 

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Jon with his dad and two brothers Scott and Jim on their dad's 85th bday!

 

 

 

Sam with his tie on!

 

Thank you to a friend Janet who figured out how I could load pictures:)   I have some more good ones but I wanted to do a test to see if this would work:)

 

 

Day 77 fish Oil Study!!!!

Last night Selah required a little oxygen.  The nurse felt like she was sleeping so deeply that she wasn't breathing hard enough.  Other than that she has done great.  I spoke to the weekend nurses and got some positive feed back.  The day nurse felt that Selah was more alert than last weekend and actually was looking at her when she came in the room.  The night nurse felt her tone was good and she was more relaxed.  The oxygen thing was a bit odd as she is not sick or anything.  We are planning on keeping her on the Ritalin another week just to see if we see a few more changes. 

We are back in Jacksonville after a good Sunday with our church.  I was NOT feeling the most spiritual but sometimes just fellowship  with folks who love us, can be a balm.  Jon's brother came to service and went out to eat with us after,  that was great.  We also ran into some friends~  one friend BJ, did the beautiful quilts for the little kids and now has done about 14 hospital gown type PJs for Selah to wear at night.  They are beautiful and all kinds of different themes from nursery rhymes to tie dye, she will be cute in them and they are so convenient at night.  Then we drove back on the way here we saw a big buck and a doe:)  Jon gets excited to see wild animals. 

I seldom get sick but I am fighting a cold...the kind of a cold that is your put your head down...your nose will stream down!  UGH!  Vitamin C and hot tea usually gets me well!  It worked in NY and I'm counting on it now!!

Still having issues putting up pictures on here.  I tried using the church computer but it seems to be my blog not the computer.....UGH!  I hate issues like this especially when I have some great pictures!!!

Please pray that Selah will have a great week and progress!  Thank you all!!!!

Day 76 Fish Oil Study

We got up and got everyone ready and went to see Selah this morning before we left.  The kids all have a little bit of a cough or runny nose so they stayed outside just to be safe.  It is so hard for me to leave her to come home overnight.  She was calm and her tone was great today and I just wanted to grab her up and bring her home with us!

We've been driving some country roads most of the time to come home and avoiding the interstate.  It's less miles but you can't go as fast which drives me crazy!  I'm a Type A+ personality while Jon is a type B all the way!   Opposites Attract in our case:)  So we stop at the same Golden Corral in some little town, I think it is Eustius Fl and I swear I don't know how people eat while staring at our family!  I can get very sarcastic and there are days when it is all I can do, to not make a public service announcement along the lines of...."I will throw mashed potatoes at you if you look at us for more than 3 seconds!!!!"  Ok rant over....  I try to tell you all I'm not real spiritual....LOL  I just think "what would Madea do???"   If you don't watch Tyler Perry's Madea movies you are mising out....  they are just so real and funny to me, I guess I can relate to them! 

We drive by Merle Haggard Juniors house every time we go that way.  We only know it is his house because he has signs up saying that....BTW, He is not the singer it is his dad that is/was.  For some reason that cracks me up too...  I just don't get it....

It's bittersweet to be home. Unless you've lived away from home for months on end, there is nothing more relaxing than being at home!  With all your junk!  I immediately put on my stretchiest old sweat pants and junky tshirt! It just feels so good not to have anyone around.  But on the other hand, we can not stand being away from Selah.  It's one thing to be at the hotel a few miles down the road...but to be 4 hours away is hard. 

Some have asked why don't we just bring Selah home...at this point, she is eligible and needs 24.7 care.  We can not even get an agency to give us a few hours a day. That is why we are waiting for it all to be in place.  If we chose to leave right now we would have NO nursing care whatsoever and we just can not do that!  We are really hoping for some answers this week, by Tuesday.  If not, we will have to push for answers.  We can not continue living like this and my husband needs to get back to work.  It's complicated for us.  Jon is preaching each Sunday at the chapel and at our church.  He is glad to be back at least that much but he needs to get back to work full time! 

God has been so good to us through so many different people....we are just awed by the kindnesses shown to our family!  As you know Mandarin United Methodist has paid for/contributed points so  our hotel bill has been covered!!  On top of that they send us meals almost every night:) 
 As well as they have sent us gift cards and gifts....they are an amazing bunch of happy folks!  If you live in the Jacksonville area, and don't have a church home, they are a good group of folks who are ready to welcome you!

We got home today to a friend who sent us videos and games!  And another friend wo sent us prayer shawls, I'd never seen one before, thank you they are beautiful!  We also received a check from the Correctional Foundation a great group that my husband has been a part of for years!  That was a blessing!!!!!  And I want to thank a friend from NC who sent me a gift to go and get a massage a few weeks ago.  I went and felt pain free for a couple of days and plan on going back:)   We've been blessed by so many different people over these past 5 months.....we can only say "thank you" and promise to "pay it forward" as we reach out to others!!!   It's been over 24 weeks since we left home and 23 weeks since the accident.....thank you for everything during this time!!


Thank you for your continual prayers for Selah and for our family.  Please pray specifically that she will continue to hold her head up more and that she will get stronger.  Pray that the Ritalin will work and the fish oil will continue doing its job!  Pray that the right nurses will be put in place and that we can get word this week of when we are coming home for good!!!  I ache to be home with all my family together but I also know that we have many respondsibilites and live outside of town, we do not ever want to put Selah at any risk by doing something dangerous just to be home.  I learned my lesson.  I really pushed for Sam to come home as soon as was possible when he was a newborn and that was a BIG mistake!  I just thank God he lived with all the issues he had and with NOTHING in place to help me!  So having learned that lesson, I am more cautious.  I also know if I just say "forget it" and come home, Selah will NEVER get the things she needs...how do I know that?  From Sam....after he was already home, our pediatrician tried his best to get us some nursing care and never was able to get even one hour a week and Sam was on three machines!!!!  So we pray and wait...   Up until the last few weeks I have really been content where ever we were at and never tried to rush anything but it's been so long and now we are so close to home....it just makes us want to be home.  It would be one thing if she was just progressing and getting hours of therapy...but that is not how it is at all. 

Day 75 Fish Oil Study!!

Selah got her fish oil and mixture today:)  But even better than that.....taking with Dr Sears' staff last night encouraged me so much!!!   As I reported Selah has had improvement on her MRI in the gray matter and in the frontal lobe.  I was glad but it hurt that we weren't "seeing" any new responses....   Well we were told that this is exactly the scenario that another patient (who went on to recover completely) had at exactly the 2 month mark in the study!  And he was in a deeper coma than Selah is so we were very encouraged by that and wanted to share it!  It's hard at times to think things will change.  But it was good to hear this!

Today Selah held her head up some, not as much as yesterday but she still did it.  I cut her nails and she yanked her hands away from me.  She hates her nails being cut!  We love any response we get from her. 

Tonight Jon & the boys has gone with some friends to a really cool place called Latitude 30 ~ it's this huge complex that has all kinds of entertainment!  Steve keeps taunting me with pictures of his food:)   Steve and Shad deserve some time to themselves for all they do for our family!!  They ate and are scheduled for bowling in a few minutes.  Shad had counted down the days, then today the hours until they would go:)  Thanks to our friends Bryan and Bill for setting this up and for Lattiude 30 for having us.  I thought it would be too much for the little ones, so we did supper and now baths....I'm hoping they will go night night early:)  Sam is snoring on my bed after a warm bath!

We hope to hear something on Tuesday about the nursing situation.  They are working on doing background screening on some of the new nurses they have hired. 

So thank you so much for all the prayers for our sweet Lala!  I have a little hope once again as we see some new improvements and hear that encouraging word!  Please pray that God will have mercy on her and that He will touch her brain and allow it to heal.  And that He will touch her body and take away the stiffness she has.  Thank you so much!

Day 74 Fis Oil Study

Well today is day 74 but the mixer isn't here so no fish oil for Selah.  The fish oil is mixed with Poly (something) to coat her stomach and help her intestines absorb the fish oil better.  It also protects the plastic in the syringe and in the tubing for her  feeding tube.   It should be here tomorrow.

She held her head up a little yesterday and even more today!  The therapist said she held it up for 2 full minutes!!!!!!   We love that! 

Jon took her outside for quite some time today.  She loves being outside. It relaxes her, I can't wait to get her home so we can be outside.

I stayed with the kids today at the hotel.  I ordered all their home schooling curriculum.  We are staying with the same curriculum their school uses.  They will be working on the weekends and over the summer!  So I guess we are official home schoolers:)  I promised my friends I wouldn't start wearing denim jumpers LOLOL!  When I go to thrift stores, I have an unhealthy pull towards them....I liked them back in the 90's!   In fact I have to really watch myself or I have been known to come home with something I would have worn in 1992 :)

We were doubly blessed tonight with a pork dinner and a meatloaf dinner.....Glad I am wearing pajama pants, I think I will go to sleep early tonight:)

Still waiting on the nursing staff.  Hoping to hear something tomorrow.

Thanks for all your prayers for Selah, they mean so much to us!  I know God hears them all!!!!

Our story

With so many new readers, I've been asked questions about our story....the whole story is within my blog but I thought it would be nice to have the main gist of it all together so you could read it.

Jon and I are both native Floridians!  i was born in north Florida and grew up in Perry.  My great aunt and uncle raised me.  Jon was born and raised in Lakeland Fl.  He had a more 'normal" upbringing.  We met briefly in a class at Southeastern University but really got to know each other when I went to apply for a job at the Talbot House where he was the director!  We eloped in a month:)  That was over 23 years ago so it worked for us!!!!

After we got married, Jon finished his last year of college and I worked at a juvenile probation officer.  Our dream was to move to NYC and work in inner city ministry.  We did just that for a few years.  Our oldest son Steve was born there.  The next year we found out we were having TWINS!  But they died at about 21 weeks.  That was such a heartache to me and I walked through a deep valley for several years.  By God's grace, I recovered from the loss and a few years later we finally got pregnant again....i was on bed rest most of the pregnancy....then Sam was born.  the day after he was born, I was holding him and he opened his eyes....in that moment our lives turned upside down.  Somehow no one had noticed but our child was blind....it was very obvious.  During that time, I committed to trust God no matter what happened.   Fast forward a year and we see a picture of a little blind boy in China, we realize we could offer him a family, 9 months and 6 days later, I'm picking Shad up from a cold Chinese orphanage! 

The years roll by, my husband is the pastor of Grace Church and the chaplain at Zephyrhills Correctional and we are a happy family of 5....until I see a little blind girl's picture.  She looks just like our son Sam and her picture keeps me up all night.  She is only 4 years old and in an Ukraine mental institution....we decide we have to adopt this little girl, Sarah.  One little girl, turns into two as we find out about another little girl there at the institution.  Selah also joined our family....  both have extreme delays and are malnourished.

Our life was perfect!  Five great kids that we adored!!  The girls just fit into our family perfectly.  We had a wonderful summer last year, every day was a celebration.  We enjoyed so many "firsts" for the girls....they were blossoming and changing, learning LOVE and family.

Then we left home August 10, 2012 for Sam's annual eye exam in NY.  At three years old, he had been given some sight through a corneal implant.  He had had great success and we hoped that the surgery might offer some help for our daughter Sarah who also had Peter's Anomaly the same rare eye condition our son had. 

On August 15, my husband were walking Sam and Selah in a jogging stroller along the banks of the Erie Canal.  We have walked that area for years, it is behind the Ronald McDonald House where we stay.  Jon looked away for approximately 4 seconds (per the police report) to check the time on his cell phone, as we were dropping off another family at the airport.  In those 4 seconds, one of the children must have caused the stroller to move, and it rolled into the Canal.   Jon jumped in and fought the current and somehow got to a tree with branches that went into the water and was able to pull the stroller and children up as he was screaming for help.  Thankfully help came and they got the children out.  Both were not breathing, Sam was revived there but Selah was without a heartbeat for 30-45 minutes. 

Selah suffered brain damage and is in the recovery stage.  We don't know how far she will come.  At this point, she is alert, has a normal sleep/wake rhythm and is responsive but in a persisiant vegetative coma.  We started her on in a Fish Oil Study that has shown great promise in reducing inflammation in the brain and allowing for healing.  She recently had a MRI that shows good changes in her white matter and in the frontal lobe of her brain but she has a far way to go. 

She was moved from NY to Jacksonville Fl in December for Rehab and we are now waiting on nursing to be set up for us to go home. 

My life has been a challenging journey but learning to trust God has brought and will bring me through!

Politics

I don't usually write anything political....I'm conservative but I don't I don't get into big political debates.  But I am in fear for my rights as an American citizen at this point. 

I am very concerned about Obama's push for gun control.  He is overstepping his role as president.  He is evoking "executive powers" to  make new laws without going through the legislative branch.  That is a SCARY thing people! 

He surrounds himself with children as he signs executive orders restricting guns, so if you oppose Obama, it would seem that you oppose "protecting" the children.  He doesn't want YOU to have the right to protect your family yet his family is protected by many guns! 

I grew up around guns.  I learned to shoot and like to go target practing.  And I'm actually pretty good!  When I graduated from high school 30 years ago, it was nothing to see trucks in the parking lot with gun racks filled with rifles.  I didn't think anything of it.  Guns were just a part of life.  People went hunting, my family all hunted.  I know many people who collect various types of guns, it's a hobby to them. 

There is just so much hypocrisy in this whole mess....never are violent movies and games addressed.  I grew up knowing healthy teens who hunted and target practiced and had RESPECT for guns.  Now I have to say I know unhealthy teens and young adult men who glory in watching violence on tv and playing crazy video games.  They have not been taught to respect a gun and the damage it can do to a person.  They have a silly mindset of "shoot them up"   And they do that without any respect for life. 

There is hypocrisy in the president sending his kids to a private school where there is already armed security and of course the girls have the Secret Service to protect them also, but then NOT wanting anyone else'  child to have the same protection. 

I am sorry for the tragedy that happened in Newtown.  I am sorry for any loss of life but we must remember that a criminal will break the laws to get what he wants.

The worry I have about our country goes far beyond just this new push for gun control.  Our country has changed.  We are headed into becoming a Socialist nation as fast as we can.  Our rights are being taken away from us on all fronts.

When we were in Ukraine last year we would have very interesting conversations with anyone who spoke English and without fail we would be asked about Obama and "did we know he was a socialist???"   They knew what they were taking about and they could see it from afar!    Some liked Obama but most did not but they would all say the same things to us.  It was very eye opening. 

I'm sad and worried about where our country is headed.   It's not just gun control, it's the abortion issue, the "redefining of marriage" , the attack on Christianity.....  the violence and materialism being glorified throughout Hollywood, the lack of morality, the attack on the family, the attack on the Constitution....our nation is FAR from where it started.