Answers to an email ~~~~~ Visiting all the children

Sometimes I get an odd email here and there....

This morning I got one that made me laugh...for real. 

First the writer asked WHY I felt it necessary to spend money to go all the way to NY for Sam's eye that doesn't even have sight in it....so if you wondered WHY we go to NY even for this let me tell you....  When we first started out with Sam, we could not get anyone to see him in this area as we had decided to do corneal transplants.  The closest doctor we could see was in Miami.  We spent YEARS going to Miami monthly, often bi weekly.  When our doctor there could do nothing else for Sam, he suggested going to Dr A in NY.  After Sam had the corneal implants, we tried to have Sam followed by the Miami doctors but that didn't work out.  His main doctor transferred and no one else was familiar with corneal implants.  We did see a nice doctor for awhile but he just didn't have the skill to deal with the implants and we had to resume going back to Dr A for everything. 

Last year I tried all the pediatric corneal doctors in the Tampa Bay area, there are only 4...all 4 turned Sam down as a patient citing their lack of skill/knowledge of the implant.  I tried a few more in the Orlando area, same thing.  We had hoped we could have someone down here for a situation like this who could at least look (BUT NOT DO surgery) at him and help us decide if something was an emergency or not.  It's not like we can just call someone from the phone book LOL!   An adult corneal specialist will not see a child for the most part.  Especially a child with implants. 

Obviously something will probably have to be done to Sam's eye, either it will have to be taken out, or hopefully a cornea transplant can be put in place of the implant.  He still wouldn't see, but the eye has to be covered so no bacteria can come in.  The cornea is basically the "windshield" of the eye.  Without it, anything could get in to the eye and cause infection. 

And the reason we have to treat even an UNsighted eye so carefully is that is very very easy for an eye infection to travel from one eye to the other.  I do not think Sam has any infection yet in the bad eye but it's not something that we can take lightly   Also an eye infection can go into the brain very easily.  So this is a serious situation but not an emergency one yet.  We are keeping Sam quiet (no jumping on the trampoline at this point!!!!!!!)

We realized a long time ago that it would be difficult going to NY for eye care.  We have always budgeted in our yearly trip.  We've saved for it.  We use the trip to spend time as a family and always do some extra sightseeing on the way up to NY or on the way home.  Our family has toured DC, Philly, Gettysburg, the Amish area, Chattanooga Tenn, Mammoth Cave Ky, so we've really enjoyed out yearly "vacation" time.  We've also gone to Niagara Falls several times as well as some of the beautiful state parks in the Rochester NY area.   But it took discipline to save for a trip like that every year.  Thankfully we could always count on the Ronald McDonald House in Rochester NY and we have lots of friends from college and ministry that have invited us to visit with them on our way up and down yearly:)  We've had a great time on our trips. 

The writer was also concerned about Steve and Shad.  She felt that Steve should be out doing "teen things" and not stuck at home.  She worried that Shad was not socialized....  For the readers who know Shad, you can stop laughing now....  Shad is one of the most socialized 9 year old in the world.  he will talk to you like he is a small adult:)  He loves people, and has plenty of opportunities to socialize. 

Just to address both things....

Steve is very respondsiable and dependable.  We look at that as a GOOD thing.  We decided our parenting philosophy a long time before we even had Sam, back when we only had one child.  That philosophy was to keep the family together doing family things for the most part.  That is not to say that we don't have some individual time with friends BUT if anyone knows us we travel as a "tribe"  We've never really used babysitters for any of our kids, preferring to take our kid(s) out with us.  Generally we are all together wherever we go.  We all have friends that we do things with but our main time is spent together as a family. 

We try to raise our kids in a biblical way.  We don't want their hearts so turned to friends/entertainment that they are turned away from their family.  There is a place for time with friends.  Just last week Steve's best bud came over and spent a couple of days.  They played video games, watched movies, ATE, played outside....  the two of them are planning a weekend party for another friend coming up soon.  BUT we emphasis time with FAMILY first and foremost and always have.  We feel that is healthier and it keeps the teen's heart closer to the family unit.  Too much "teen time" and not enough family time, takes a teen's heart away.  It's funny but just in the last 75 years or so has "teenage years" really been called that.  In all of human history, a child went from being a child to being an adult.  I'm not so sure what we consider "teen time" is a good thing.  Our son is much more an adult than a child, and he makes many of his own decisions and he has experienced more things than most teens have experienced both good and bad.  We feel he has a sure footing and he is building his life on THE rock.  We are not strict parents in some ways.  We allow somethings that others with our convictions may not, and maybe we restrict some things others would allow.  I think we have found a great balance and our kids' lives speak for themselves. 

The writer was also worried that the boys weren't in clubs...we are lapsed members at the YMCA, up until last year, we were members in good standing but we have had a interesting year with being gone the majority of it!  Steve did triathlons and trained for them up until we left for  Ukraine.  Since then .....well but don't worry we had just decided to become members in good standing again LOL

The same writer had a problem that I had friends and walked with one daily....LOL   Generally I go walking at 6 am but my friend can't make it that early.  We usually finish and I am home before my kids get up anyhow.....  Don't worry in the summer I will be out there at 6 am by myself as my friend can't walk in the summer.  I'll try not to put too much on Steve as he is sleeping!  (she was worried my kids had no friends but I had a friend lol0

This person was worried that the boys would have more disabilities than the little ones have....if you know my boys, you know that is not a problem

I have to say we have been so impressed with how the boys and Sam and Sarah also handled all the upheaval of the past year.  They just rolled with the punches, which is a GREAT life lesson.  I feel like our boys are much more prepared for the realities of life than either Jon or I were...  I had a rough life but no one to show me how to deal without falling apart when hard times come.  Jon's family chose the "American way" of shielding their children from the realities of life and that wasn't good either.  For example his parents didn't take them but once to visit a grandparent in a nursing home and felt it ws "too sad" for the boys to deal with.  We're not like that at all.  We've always dealt openly and honestly about the various things our family has had to go through.  In dealing with things, even the accident and the aftermath, in an open way, we feel it "normalizes" things for our children.    For example they are learning to live with having nurses in the home and it's becoming "normal" and even fun to them.  Sometimes at night one of them will mention something about one of the nurses, something they want to show or tell them the next day.  We don't let our house be a mournful home, despite our sadness at times.

I'll tell you one of the sweetest stories ever about Shad.  While we were in NY for all those months, we met several of Dr A's other patients.  One boy, AJ, is Shad's age and they hit it off.  Well AJ has some serious health issues and eye issues, much worse in some ways than Sam or Sarah.  He is an amazing boy.  Well, the night after AJ's surgery, Shad sat with him in the dining room.  AJ had gauze over his eyes and was having trouble feeding himself.  The boys were talking about Power Rangers and having quite the debate over the various Power Rangers.  AJ was reaching for his drink, Shad without missing a beat, nonchalantly, reaches over and holds the drink for him.  Neither boy was embarrassed of AJ's "disability"   In a few minutes AJ wanted to go lie down, and Shad walked arm in arm with him down the hall.  Both me and AJ's mom had tears just to watch the two interact.... Those are the things my boys are learning....and I LOVE it!

It cracks me up reading some comments and emails I've gotten over the years.  Honestly, I usually get only positive insightful ones, but some of them are just funny/sad that folks sit around and take the time to reply to me.  When we took the kids to St Augustine one weekend when Selah was still in Jacksonville, I got an email from someone who thought it was awful we were out gallivanting around while Selah was in the hospital....  So you are wrong in some eyes if you stay home, and wrong in other eyes in you go out....LOL.   Life is a balance, our life is more of a balancing act than some others....



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Selah's legs/ankles/feet are doing so good.  She has not had any drawing up/ pulling up of her muscles.  Her PT works her 3x a week and she feels that Selah's surgery was a success and that she won't have any further trouble based on how good her muscles are doing.  When someone has a brain injury, often the body is affected in some way.  Some people can not be helped by surgery and continue to draw up their bodies or stiffen.  Thankfully it seems that will not be Selah's case.  She will have Botox injections in her knees at the end of the month.  Botox works for 3 months, the PT feels Selah will only need one set of Botex in order to get her range of motion back fully. 

 

Selah in therapy.  Look at her left knee bend

 

 

 

Now her right knee!~

 

 

I don't usually put pictures of my kids' legs on the internet, but we are beyond thrilled with the range of motion she has!  It is truly amazing:)  I LOVE seeing her knees...there were months where her knees looked like they were trying to come out of the back of her leg because of the tightness.  This is just beautiful to us!

 

 

After that work out, Selah wouldn't quit watching her nurse LOL!

 

 

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A year ago today we got a tour of the children's section of the institution.  I

knew the day was coming....and to be honest I dreaded it.  I knew my heart would be broken and it was....

 

Life 2 Orpans a wonderful ministry   http://www.life2orphans.org/cms/

 

works in many areas in Ukraine, many orphanages and institutions.  They provide many services from supplying diapers, medicine, fixing pumps etc....very practical REAL stuff.  They also have a program where you can pay about $500 a year and it pays a village woman to come in a few hours a day and work with an orphan one on one.  Both of my girls had an individual caregiver who did more for them than the orpahage staff alone could have done.  I am forever grateful to Life 2 Orphans and the women who worked with my girls. 

 

We were allowed to meet the children L2O were helping along with some who needed sponsors.  To say it was an awesome experience is an understatement.  It was awesome in the way it tore at your heart.  I felt the nearness of God's heart that day in such an overwhelming way.  Me, who didn't cry much, fought tears the whole time....my heart ached within me.  I think every Christian on the face of this earth should have to walk through an orphange.....it would take away the desire for earthly things.  It would give a fire on the inside to do SOMETHING to help save real lives....

 

 

 

 

 

Here we started in Sarah's room

 

 

 

oh this child just broke my heart....

this sweetie has a family coming to bring her home in the next few days thank God!

 

My Sarah!  So thankful she had a sponsor who paid for this lady to work with her some.

Some of these children known only to God

 

 

 

 

Sally the 9 year old....she caught our heart...if things were different, she might just be coming home with us.  But thank God a sweet family is coming for her!!!!

 

 

 

 

Sweet little one

 

I held the tears until I turned around and was shown Angela.  You see, Jon & I sponsor her.....

She is 12 years old and has many health issues....

 

what joy she had with me jsut holding her

 

 

 

everyone just left me and her alone.  I cried and she smiled and snuggled into me. 

 

Angela is available for adoption

 

 

 

 

I didn't want to let her go.  I did get to spend some more time with her later

 

 

 

 

 

 

 

This little boy is now home with his family!!!!  His caregiver was awesome!

 

 

here we are in the auditorium.  the ladies who work as Individual Caregivers were being honored

 

 

this is Sarah's

this is Selah's

 

 

George Jon and Alexander

 

The director viewing some of the older resident's art work

Older ladies at the institution.

Life 2 Orphans also helps them

 

Here is a pile of coal that keeps their heat running.  Do you see the dog on the top?  He was there daily

 

we had some reason to go back to the courthouse for something that day.  I thought this was pretty

 

Here is me cooking in our kitchen

 

some more pictures of the institution

 

 

Sweet V is going home SOON!!!!

 

 

 

what an emotional day that was....  We ended up not spending much time with the girls that day and it really bothered me since it was a Friday!  However I think this was the last weekend we didn't spend with them.

 

I was wrung out by emotion when we left that day.  So much need....made me think of really how little I do for God and others.  I hope I never forget the feeling I had that day, I pray my heart stays tender,  I sensed God's presence in those rooms.

 

So as you look at these pictures, remember each of them is a little one who cries out for a family, for someone to love them and tuck them in at night.....Please pray....

 

 

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!



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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....

 

Henry's legacy

http://reecesrainbow.org/57151/sponsordobrovits-2

This had to be a separate blog so that you all could concentrate on this family's story....

Do you remember Henry?  He died last November following complications from surgery.  His mom Carla has been such a friend to me as we've walked this path with Selah.  We would message each other from different hospitals, as we sat by the side of our children. 

Carla and her husband have chosen not to let their hearts grow bitter but rather let them stay open to love others. 

http://www.bringinghenryhome.blogspot.com/

 

this is what they are doing...adopting a sibling group!  When I read this today, after the day I've had, I felt lifted up just to know this family! 

 

Can I ask you to give to them to make their adoption easy?  I LOVE their hearts!  I love all the sweet comments they have received on FB, even reading what all their friends have written brings a smile to my face.  I love that they didn't let bitterness steal their joy....

 

So go to their page and give...   http://reecesrainbow.org/57151/sponsordobrovits-2

 

go to their blog and read it  

 

http://www.bringinghenryhome.blogspot.com/  

 

They adopted Henry at the same time we saw Sarah's picture and fell in love with her. 

Henry passed away just a few weeks after Selah's accident...I feel a connection with Carla.  While we had children in the hospital we both worked to raise money for a family who was in country and trying to add another child to their adoption. 

 

Their story is amazing and so unselfish...please pray and give towards them.

 

I know I often present different opportunities for you all to give and be a part of changing a child's world...thank you for so many times stepping up and giving!  You are making a difference! 

Thank you!