See Saw....

 

 

 

Selah is still not "up to snuff"  She is just a bit off still.  She is scheduled to start the magic medicine ...the Tobymicin on Saturday (28 days on 28 days off) and that is probably all she needs.  She hasn't stormed again but her heart rate has been up some.  She did good in therapy today and was relaxed which is good. 

 

We are in a HUGE insurance fight right now for nursing. We're on the 2nd level of appeal with Blue Cross. I'm mailing the packet in tomorrow. Please pray that we win. Selah could get nursing through Medicaid....but honestly the caliber of nursing is lower. We're very happy with our nurses, but I doubt they could take a $5 an hour cut in pay. I'm very stressed as I love all 3 of our nurses and do not want to lose them. They work well with Selah and are very professional. We had some nurses in the beginning that we NOT professionals...but we didn't' have them for long. I am not up to weeding out nurses yet again....These three work hard to ensure she is happy and as well as she can be.  Thankfully I have lots of documentation from her doctors, specialists and therapist.  The thought is we will win BUT it is such a pain to have to fight this...  We pay our insurance premiums every pay period.  The insurance company is putting us off so that Medicaid will pick it up...at a cost to tax payers.  (that is our theory)  Please pray this will be solved and we won't lose any of our wonderful nurses!!!!!

 

 

The kids on their see saw....I feel like I'm living on a see saw some days!!!!

This was today during therapy.  FYI, the ONLY one doing any work was Sarah, she was working it and Sam was just sitting and enjoying it LOL  He is so lazy:)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My twins....

 

Last night the guys were at the Y and I fed the kids and got their PJs on.  Then Sam crawled up on my lap and wanted me to rub his back.  So I did for about 30 minutes while I was watching tv.  Jon got back home and sat down with us.  I wanted him to rub MY back and Sam wouldn't let him.  He kept getting between us and climbing on his lap!  Don't worry I put that little boy to bed so I could get a back rub LOL!  He is a MESS!!!  It was cute.

 

Please keep praying for Selah....thank you!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Missed our goal!

Well we didn't make a week without Valium and Clondine......  we were going to get her up this afternoon and put her in the stander and she started storming.  This storm was unusual as her heart beat went very low at times, at one point down to 38!  We think the machine just was not getting it right but we do think it went down low.  It also went really high.  She recovered in about 30 minutes. She was only a day and a half from making it a week without those meds.  But it's still good that she went so long without even needing the meds.  We kept hoping she would be able to deal with the storm with out the meds, sometimes repositioning her to where she is bent at the waist, seems to help "break" the storm.  It helped her some but she could not recover and calm down without the meds. 

My sweet friend, Charlene, was able to spend the day with our family.  It was good just to sit around and talk:)  My kids love her and so do I!   She and her family live near Rochester so we have been blessed to be able to see each other for the last 6 years since Sam started going up there.  We always get together and do something with each other and with all of us.  She has 5 kids too:)  So we are a big bunch when we go out but it is good times for all of us!  We've been friends since before we were married and had kids, so that has been a long time, with a lot of shared history.

I'm still loving this rainy Florida weather!  It's so soothing and keeps things much cooler than normal.  We really need to work on the lawn....the weeding is calling my name but I'm trying hard not to hear it.  I have so many things calling my name!  Everything is growing fast and furious this year. 

I have many friends facing some big health issues...could you please pray for:
G who has leukemia
S just diagnosed with stage 4 Ovarian Cancer
The S family who just lost their wife/mother today
Irene from our church who has various medical issues going on

So many needs...heavy hearts.....

Please always remember to pray for Selah. 

Family update and Video and some thoughts on helping others......

Selah continues to do good, still no Valium or Clondine needed:)  So if she can make it 2 more days we will have made it a week without either:)  She had a slight rise in temperature today...to 99.4 and that was unusual for her, but it went back down, our nurse didn't really call it a fever but I was getting worried!

Sarah had a swim lesson today.  She loves the water and does good.  If we could just get her to learn to blow out the water, she is good at holding her breath.  It's been a good experience for her.  For me?  Well I had to fight a panic attack sitting and watching this morning.  I felt so stupid but I don't like to see the kids in water now.  I was just watching her and the teacher and BOM! out of nowhere my throat squeezed up, I was afraid I was going to pass out so I made myself get up and get away for a minute.  Thankfully I was able to talk myself down from it.....  oh the fun (said with sarcasm!)  She also had Physical Therapy and is really using her walker.  We are going to start taking the walker with us when we go out so she can get used to using it in different settings.  Her therapist is sure she will one day walk without a walker!

 

I hope you can see this video of Sarah walking...... we are going to paint the sides of the sidewalk so she can maybe see the sides.   Remember just over a year ago, she couldn't even stand up, hardly hold her head up.....

Shad had an ear ache today that just wouldn't go away.  Love our pediatrician, they worked us in.  Shad seems to have really thick old ear wax....LOL first the circumsion and now ear wax, he may ban my blogs before long.  It's been a joke in our home that Shad never ever has ear wax, never....but evidently he has had some and it just didn't' come out.  The doctor assumes there is water behind the wax and that is causing the pain but Shad hasn't been in the water for over 2 weeks!  We have some drops, and he says he feels better already.   BTW the pediatrician said Shad's circumsion looked great. 

Sam has been discharged from Physical Therapy....however he thinks he is still a student!   Since he now can climb, and do various things, he has reached the limit for therapy which is a good thing.  Bad thing, he really likes his therapist!

 

 

Steve went to work out with his dad tonight.  He likes working out but sometimes by the end of the day, he is ready to relax rather than go to the Y.  He is still working on schoolwork and will throughout the summer.  He has his Russian class to finish....I told him to take Spanish!   He wants to start really working out to be ready to start the Academy when he graduates next year.  He is serious about wanting to work at the prison. 


  Jon does a lot of off road bike riding, usually 5 or 6 times a week, 12 miles a night.  He rides in some of the wilderness areas around here.   Being on the bike he has come across all kinds of wildlife, one night a flock of turkeys probably 20 or so, a herd of deer, all kinds of snakes, wild hogs, raccoons, bobcats.... too bad he doesn't carry a camera with him.   The prison is going good, the ministry there growing, with a good part of the inmates participating in the chapel services. 

So I nice little update on everyone....

Sometimes we are asked how our family is doing.....what do I say?  We are living life....yet...life is "on hold"  Jon goes to work, preaches at church, works out, I do my yoga and see friends and take care of the kids, cook, do laundry...the kids stay busy....but life still seems surreal to us all.  We have full time nurses in the home, all kinds of equipment in the home, therapists, all kinds of people in and out.  The kids all share a room so Selah can have her own room.  The boys have  air mattresses on the floor and all their stuff is in my husband's office.  We've really clung to each other through this past year.  We've learned that sometimes that is all you have. 

We've been amazed by some people's generosity, not just because of financial gifts but the love and concern we have received from others.  Many times it was folks we didn't' know or didn't know very well.    Then we had some weird stuff happen too...all kinds of promises made of help....made when we were in NY but then when we got home, no phone calls, visits or anything.....  We've just kept our eyes on God and trusted Him.  We have learned a lot through this!  One thing is to DO for others.....do NOT assume that someone else will do for them....  I never want to pass up a chance to do something for someone in need now that we've gone through all that we have.  Secondly, I have learned NOT to promise something that I have no intention of following through on.....  Through this time I've felt really let down by some folks.  Not that I expected anything one way or another UNTIL  people made promises....   But one thing we learned through our adoption experience was to look to GOD and God alone....   Sometimes I have to guard my heart  when I compare how we have been there for others and how others have not been there for us.....  BUT then I think of the unexpected ones who have been there for us... that has amazed us all!!   

The most important thing you can do for someone who is going through a hard time is to simply be there, presence is important.   The bible says to "weep with those who weep and rejoice with those who rejoice"  Nothing means more to us than the ones who have wept with us and continue to weep with us when we need it.  My friend Kandi lets me weep....in all kinds of odd places and isn't' embarrassed of me  (or if she is she hides it LOL)  She went with me to the doctor to try and help me when I was getting crazy results and that was an experience we will never forget!  She found me a lawyer for our re adoption....  My friend Meichelle  took time out from her vacation to make it to see me, it was not easy but she did it and she has loved me and prayed so much for Selah.  My friend, Charlene stayed with my children up in New York so we could be with Selah....   A college friend Bryan worked everything out for us when we were in Jax....and Selah was in rehab.  We hadn't seen each other in over 20 years.....  A church in Williamston NY still remembers us.... A church in Jax just blessed our family by pitching in and putting us in a hotel while we were dealing with Selah there in rehab.  Neither church was from our denomination...just Christians reaching out to a family going through the worst months of our lives.  

God has taken care of our family in some incredible ways,  and again I'm not just talking about financially.  I mean emotionally more than anything!  But I have learned that "faith without works is dead"  There are times when someone says "I'm praying for you" that I want to roll my eyes....  Of course sometimes that is all one can do....but sometimes that is a nice little Christian COP OUT!   They say it and pat themselves on the back and never give another thought to us.   I don't want to be guilty of that....  Sometimes it is hard to actually take the time to DO something but the thing is, that is real Christianity.   I'm NOT writing this to make anyone feel bad or feel like you have to do something for my family.....there are hundreds of situations that this can be applied to....    There is a scripture that comes to my mind.....from Proverbs 3:27...  "Withhold not good from them to whom it is due, when it is in the power of your hand to do it."  If it is not something you can do, the Bible does not obligate you to do it.  But if you can do something ....then do it! 

I'm limited in some ways now but I do what I can for others.  One way you can do something for someone is if you live in this area and you give to the Monier's family yard sale....  You might not have the money to give to their adoption fund but you could go through your things and give to their yard sale:)  You know I had to get adoption in there!!!    You can also give to the Orphan Fund for them this month!!!!! 

It all comes down to trusting God....that is what I've learned and am still learning. 

Southeastern University

*******If you got an email from me asking for money because I had been mugged in the Philippines....please know it is not true!  LOL!   Now if It had said I was in the Philippines adopting a child....THEN it might have been true:)  Sorry to inconvenience everyone, I've never been hacked before but it was nice to see how much everyone cared!  THANKS!!!!!!!




Today me and some college friends met up at our alma mater....Southeastern University.  Of course when we were there back in the 80's (GASP)  It was Southeastern College....SEC.....

When we were there, it was basically a Bible college.  It was accredited with the state and had a few other majors, mainly education.  I LOVED my years there.  I started in August '84....ALMOST 30 years ago!  That does NOT seem possible at all!!!!!!!!!

Today we laughed and reminisced about our years there..... it was a very happy time in my life.  Lots of friends and fun and some serious learning too.  I loved just about everything even our daily chapel services.   All these years later I have many life long friends all over the globe from our days at SEC.  FB really helps us all to stay in touch.



We started out in the "new " library.....   I helped move the books over from the "old" library back in the winter of 85 I think LOL!   I worked in the library for years.  LOVED my boss Bro Cramar so much.  He "gave me away" when Jon & I renewed our vows at Jon's family's home after we eloped.


We were looking at old yearbooks dating back to the 40's and 50's....  it was a hoot!  We tried to figure out if any of the students were still alive.  My friend Charlene reminded us that in 100 years ALL of the folks in our yearbooks would be dead....thanks for that uplifting word Char!!!    We also went through our years there so if your ears were burning.....it might have just been cuz we were discussing you ....(nothing mean ~ really!)

 

Same chairs as 30 years ago  !!!!

 

Jackie, Laurie, Charlene and me!

 

LOOK I am wearing a TANK and a short skort on campus!!!!!!  I would have lost some MAJOR honor points "back in the day"   We barely were allowed to wear pants and shorts were a big NO NO !  I lost several honor points for wearing shorts!

 

 

Bethany Hall where the freshmen girls lived

 

I'm pointing to my first room at SEC

 

 

                                                       Looking down towards Bauer Hall

 

 

                                                 In my freshman room

                                                           Charlene in her freshman dorm room

 

My bathroom....LOL it did NOT look like that back 30 years ago!

 

 

 

Krystal, Laurie me and Charlene on the stairs in Bethany

 

Bethany Beach!

 

 

Looking towards the Music Hall.  We used to have some good times in there singing some good old gospel hymns.

Charlene pointing to where her hubby used to live in Bauer Hall

Charlene showing how she would whistle for him:)  BTW they have been married for almost 25 years and have 5 kids!!!!!  It's cute to remember how it was when they were dating!  she still whistles for her Dan!

 

The Chapel

 

FRIENDS!

 

The old café....

 

Spence Hall I also lived there

 

 

Nice memories....SEC was such a fun time in my life.  It's a beautiful campus now, very modern, very cool.....not sure I like it as much as I did back "in the day"   We were so "uncool" but it was good:)   We were all VERY serious students and we were going to change the world.....well not so sure we changed the world.  I'd like to hope that we at least changed our small part of the world. 

Looking back I'd say we were idealistic but God still used us all in different ways. 

 

We were talking today how it can make you feel sad to go back and revisit a place that was so paramount in your earlier life.   It seems like I've been doing a lot of that lately.  One can't help but think of the various decisions made in the past and how they affect the here and now. 

 

Mostly I can say I have very few regrets in my life.  There are a few major ones when I let down someone close to me that I wish I could change.  And for me, always August 15, 2012 is a day I wish I could live over and change completely....

 

Most of my life decisions I made, I am happy with....but I can say I could have never predicted where my life would be at 30 years later....  this is probably NOT where I would have thought we'd be!  

 

Actually when I started SEC, I thought I'd be a missionary.  In fact, I didn't' even want to date guys unless they were planning on being missionaries!  I felt like I'd go to Germany.....well I did have a couple of lay overs there on my way to and from adopting the girls!!    Then in my sophomore year, I got involved with a street ministry that worked on Orange Blossom Trail in Orlando, working at a soup kitchen with the homeless  and with the prostitutes.  I was honored that year to be chosen as a Mission Intern and I did my internship in Brooklyn New York, in the INNER city!  So then my focus was on home missions, specifically NYC.  In fact, that is what caught Jon's attention :) 

 

That summer was an eye opener for me!  Lots of decisions I made that summer really affected my long term future, but at the time, I did not even recognize it.  Looking back, I see how my life could have been a lot different.  There have been moments that I've wondered about some things but....I can say all in all everything worked out good. 

 

After Jon and I married we lived and worked in NYC for several years.  We worked at Brooklyn Teen Challenge  (a Christian Drug/Alcohol rehab)  and we helped plant an inner city church. 

 

So life is a journey....you never know where that journey might take you or who you might encounter on that journey. 

 

I really appreciate my long time friends.  My husband kids me that if I'm not friends with someone for over 20 years, I think of them as just an acquaintance...that is not true but I do treasure my childhood and college friends.  There is something to be said about having long term relationships with others.   If a person doesn't have someone in their life that has known them for a long time, it makes me wonder about them.  I'm blessed by the folks in my life, even if I don't get to see them very often!  There is just something special about shared memories! 

 

Selah continues to do great, she is as stable as she can be right now and that makes us happy!  Thank God she still has not needed Valium and she is not needing the Clondine either . She does wear a patch of Clondine so it's not like she is getting some but she is NOT  needing the liquid twice daily dose now.  Which means to us, that her brain is functioning better at keeping her blood pressure in the normal range.   Please keep praying for her!

Sunday Pictures

 

 

Our Sunday in pictures.  People kid me about taking Sunday pictures but this is when we are all together and have someone else who can take a picture for us.  I've always treasured pictures of my kids but now even more so.  I wish I had more pictures and videos of Selah before the accident

 

 

 

 

 

The WHOLE Gang:)

 

 

 

Sarah is smiling:)

 

Selah was starting to turn her head towards our friend making crazy noises:)

 

Sweet girl with her new dress on

 

My beautiful niece Anna!!

 

 

 

Yvonne and Jon

 

this is what we do after church LOL

 

 

 

 

 

 

I love that Sam can drink from a straw. 

 

Sarah drank from a cup today too.  I should have gotten a picture.

 

A good rainy day with family and friends....worshipping God together.

 

One of my closest college friends is down from New York and tomorrow our "group" is hitting our alma mater  Southeastern University to walk around and remember all the good times we had there:)  And to be envious of how nice the students have it now!!!   And I'm planning on wearing SHORTS!!!  LOL   Back when we went there, the students were NOT allowed to wear shorts so I'm going to enjoy wearing them tomorrow. All my SEC friends who lost "honor points' for wearing shorts will totally "get it"!!!!!   I might even wear a tank top!  :)

 

Selah has had an incredible weekend.  She has not had one dose of Valium or Clonidine since Thursday!  She has slept like a log too:)  Last night I woke her up (accidently of course) at 5am to change her and it ticked her off LOL. This morning she slept till 6 :30!!!   It's really good signs that she is comfy and well. 

 

I don't know if anyone has seen the news reports about Fish Oil.  It seems in several studies high doses of  fish oil seems to cause prostrate cancer.  Obviously we don't have to worry about that but it did make me wonder about other kinds of cancer.  The studies were not done to see if fish oil had any connection with cancer but that was what was found. 

 

Selah is in her 8th month of taking  massive amounts of fish oil.  We do feel it has been a positive thing for her.  Everyone who comes in contact with her can not believe she was without a heartbeat for 45 minutes.  She is much more aware than anyone they have dealt with that was in a similar situation.  I hear this from everyone new who takes care of her.  She has wonderful skin, her muscles are great, she has nice body fat..... all that is good.  But now I have concerns....  we will be looking into this more carefully.  We only want to help Selah and not harm her in any way!!!  

 

So please keep praying for Selah. 

 

 

 

Sarah's swim lesson

I actually got some pictures of the big rainbow

 

It was so much bigger in person

 

 

SARAH'S SWIM LESSON

 

 

 

She got in with daddy as we were waiting for the teacher.  She was so happy.

 

this child has no fear!

JUMP

 

Again!

 

Ms Sherry worked with her

 

 

Tried to teach her to climb on the side for safety

 

 

 

 

 

 

Look at that little sweet face!

 

 

Sarah had a blast at her swim lesson.  She seems to understand to hold her breath.  But she doesn't get the idea of blowing out water.  The teacher isn't sure how far she can go but we are signed up for 4 classes and then we will reevaluate.  Sarah really enjoyed herself.  Not being able to see to pattern things and not understanding abstract words...its' a challenge for her.  She is not afraid of water and can almost float.  She has so much energy but once we got home, she fell asleep on the floor LOL

 

 

Good news, I had put off taking our dog taking our dog to the vet for her yearly checkup since we have been so busy.  In the back of my mind I was very worried about heartworms.  When Brownie got put in our fence one night years ago, she was positive for heartworms and we had to go through the treatment.  It almost killed her.  We've been really good to keep her on her meds but with us gone, and even when we got home it was not a big focus....  Finally today my husband took her and she is negative!  I'm so glad, I was feeling guilty about not getting her taken and tested and getting her meds. It was such an ordeal to take her , I had to give her a bath which she hates, buy a new collar and lead as we have no idea where our old one is....give her a brush out....  I was hoping with all the hair no mosquito had bitten her.   I'm usually quite the good animal mama but.....this past year have put the animals waaaaaaaaaay on the back burner!  But she is all good:)

 

We are having a beautiful rainy day here in Florida.  I LOVE weather like this.  We've had so much rain this year that everything is green and lush.  It is beautiful.  Next year we will probably have a drought....

 

Just a reminder.....Channah is our orphan for the month,  You can give to her adoption by mailing a check to Grace Church 7060 Berry Road Zephyrhills Fl 33540 AND you can give by cleaning out your closet if you live in this area.  I am personally going through each room of my house and going through everything.  You never know if something you have and don't use might help someone else.  Channah's family is going to have a BIG yardsale and you can be a part of it.  it won't cost you a dime!  Just drop things off at the church and we will get it to her!  It will be good for you to take the time to clean out things and good for Channah!  I LOVE to clean out closests and drawers.....I also love to clean other people's stuff out too LOL just ask a few of my friends.  I'm the opposite of a hoarder....LOL  But even despite that, we seem to still collect more things than we can use.  So help us out and help Channah get home!!!!!!!