Happy Halloween pictures:)

 

Selah says Happy Halloween.  Cute little bunny:)   She rode in her stroller and did the parade in the hospital:) 

 

Shad dressed as a Star Wars Sith and went out Trick or Treating with some volunteers from the RMH who have become our friends.  He had a blast & enjoyed getting to know their grandson.   they went to a RICH neighborhood......All he got was GOOD stuff LOLOL  Nothing from the big "no name" $5 bag LOLOL  All name brand candy:)  My kids were really impressed:)  All good chocolate and only ONE Smarties LOL

 

 

 

Jon was with Selah all day and she did great.  She participated in the Halloween parade in her stroller and was alert throughout.  Tomorrow morning we are having our team meeting.  Looking forward to it!  Can't wait till Monday to start the Fish Oil study!  We feel like we are just in limbo till it gets started:)

 

I took the kids with me to go thrift shopping.  At the Salvation Army, Wednesdays are 1/2 price day:)  I got a ton of stuff for everyone for just $30:)  Everyone got something but Shad this time.    You just never know what you are going to find. 

 

Then we went to a Halloween store to get Shad an outfit.  He was so excited to get his outfit and light saber:)  While we were there Sam was looking at some things hanging on little posts, moved forward and poked his bad eye.  It started bleeding in the eye.  It was his bad eye,  he really doesn't have sight in it.  Even still I was almost passing out along with the worker!   I was able to call Dr A and take him right in.  He came in and looked at him and said it looked like the cornea got nicked.   There is no problem,  and it should be fine.  Even tho Sam can't see in that eye, I still don't want anything to happen to it or it get infected!  We go back next week, just to make sure.  We've never had an accident with his eye before.  I really need to make him start wearing his glasses if for no other reason than to protect his eyes!

 

We got one of the neck pillows today for Selah.  I had to try it out for her:)  It's great!  Thanks Gracie and family!!!!!  It's great and very heavy, can't wait to use it on her tomorrow.  It being heavy, gives her stability.  I'll post pictures tomorrow:)  Another friend is sending one also.  I can see using it on her neck as well as her legs. 

 

Most nights a group or a family brings in a meal to the RMH, tonight not only was the food great but so was the family!  The kids and their friends played with Sarah and Sam.  All the girls are planning a future in working with Special Needs kids and adults.  The mom does infant massage, and other things and she is going to volunteer to do massage on Selah.  The girls want to watch the kids:)

 

Hope you had a good day....please keep praying for Selah!

 

 

16 years ago

16 years ago today,192 months , 832 weeks ago, 5840 days  ago we said goodbye to our twins....

We were shocked to find out I was pregnant again so soon after having Steve, remember we were the ones who had waited six years for a child. He was just 7 months old.   But to our shock, I took a pregnancy test before mouth surgery....and another ....and another ....and they all said the same thing...POSITIVE!  The man at the same drugstore down the street from us in NYC finally told me I needed to believe what I was seeing and quit buying up all his pregnancy tests LOL

We were thrilled and from the very beginning I "knew' it was twins.  I dont' know how I knew it, I just did!  On our 9 week checkup, they did a sonogram and sure enough, there was baby A and baby B!   It was an easier pregnancy than Sam, I didn't throw up as much thank God.  At 19 1/2 weeks I did the AFP test (alpha fetal protein)  It came back showing one child could have a neruo tube defect.  The doctors weren't too worried since the test was a bit late and I was carrying twins but they did send us to a high risk doctor and a geneticist.  So first we saw the geneticists and determined that there was nothing on either side of our family.  Then a week later we had our appointment with the high risk doctor and was having a major ultrasound.

That morning as we were leaving, I drank a bunch of OJ because I hadn't felt much movement and I was scared.....

In the office we had a screen and the tech had a screen.  As soon as the tech put the wand on my stomach, I knew the first baby was dead, there was no movement and I said "he is dead" then she moved to the next baby and I said "he's dead" and then threw up  (my response to stress)  the doctor came flying in .....One baby did have Sevres spinal bifida....

It took another week before they got me into the hospital for the surgery.  I did not want to go through labor.  I had a D &E I was already 22 weeks when they died so I was much too far along for a regular D&C.  After they took them I began to  hemorrhage

Disseminated intravascular coagulation (DIC) is what I had.....
Disseminated intravascular coagulation (DIC) is a rare, life-threatening condition that prevents a person's blood from clotting normally. It may cause excessive clotting (thrombosis) or bleeding (hemorrhage) throughout the body and lead to shock, organ failure, and death.
In DIC, the body's natural ability to regulate blood clotting does not function properly. This causes the blood's clotting cells (platelets) to clump together and clog small blood vessels throughout the body. This excessive clotting damages organs, destroys blood cells, and depletes the supply of platelets and other clotting factors so that the blood is no longer able to clot normally. This often causes widespread bleeding, both internally and externally.  We've been told that 99% of people with it die.   It was a miracle that I lived.  '

To top it off, there was some tainted blood that got into the NYC blood supply.  In that same month two people had been affected at the same hospital I was at!  So for years after I had to have HIV testing....

It was an awful situation in every way.  At that time we lived in NYC and were very alone with no family near us.  I went through the deepest depression of my life and had it not been for Steve, I would have been glad to die....  No one understood the pain I was feeling.  I even had a minister that we began working with tell me to "get over it" on the way to a service where we would be sharing about the new ministry we were helping to launch.....Let's just say I  can not write on my blog my response to him!  It was a very cold night!  LOL  what a great Job's Comforter huh?  Needless to say he did not attempt to give me any more advice!  Pretty sure he thought I was demon possessed....

I walked through the deepest darkest valley of my life during the next few years.  I was so angry at God, at everyone to be honest....I questioned everything I had ever thought or believed.  I wanted those babies!!!!

One of the main reason I think I struggled so much was that although I had good theology in my head...I had been influenced by the Pentecostal/charismatic bad theology that teaches if we are serving God our life is going to be great.....we're protected....

Now if you'd asked me if I believed that, I probably would have said NO!  But I think subconsciously I did believe that....

I can remember going down the list with God and showing Him how He was so wrong to have let this happen to us.  I listed all the good I had done, and how I had served Him faithfully...Didn't He know we were leaving in the middle of Brooklyn NY, making nothing...just to serve Him?  

See I had never had good in depth teaching about suffering.  I was raised Pentecostal and I can tell you that Pentecostals like to tell you of the Victory In Jesus NOT the suffering in Jesus.  You don't get too many amens when you talk about suffering.  So although I had good theology, in my mind were all those sermons over the years about how God will do miracles, part the Red Sea, give you back your dead....  I even had a nice but weird guy lay hands on me and pray that God would bring the twins back to life.  That freaked me out quite a bit to say the least....

So in my heart of hearts, I felt God had let me down.  So I decided to run away from God...and run I did......for years.  I didn't try to be up in people's faces about it but I wanted to be left alone.  Please remember I was still a preacher's wife.   We moved home just a few months after we lost the twins and Jon went to work for the Department of Corrections as a chaplain and I went back to work as a probation officer.  Steve was little and Jon had to work on Sundays often so I was able to stay out of church most of the time. 

But during those years, I always felt God drawing me back to Him.  Sometimes I would cry out to Him, sometimes I'd rail at Him.  It was not a pretty time, really hard on my marriage.  Somehow I worked through it all, got a true picture of what the BIBLE teaches, not man.....And I began to see God is a God that is close to the broken hearted.  The bible says Jesus was a man of sorrows, acquainted with grief.   I began to see that God was not responsible for the evil in the world.  Man had made the choice in the Garden of Eden and the affects of that choice effect us today!  I began to see that God rarely delivers us FROM things but rather THROUGH things.....I looked at the whole NT, so much suffering by the greatest saints.  Ten of the disciples got martyred for their faith, God didn't deliver them....What an eye opening experience! 

So I learned all that to be given Sam....I am honored to be his mom and wouldn't change a thing but it was ironic to me.  BUT I had gone through all those years for a reason, this time, I was not going to fail the test.  I was going to trust God.  Since then I've been "blessed" to have many other times when I had to make the choice to trust God and not get bitter.  Obviously I am going through the hardest trial yet.  Again I chose to trust God and not get bitter!!  So let me encourage you to look to God, see Him for who He is, not for what man says He is!  Don't be influenced by faulty preaching or even worse "down home theology"  like my famous hated saying "God won't put on you more than you can bear"  That is no more biblical theology or even scripture than "Twinkle Twinkle little star"   Know God for yourself. know His real promises not something written in a little "promise book"  Be acquainted with the real promises of God AND REAL RESPONSIBILITIES of a person hoping to hook up with those promises.....  Nothing kills me anymore than a person who is "claiming " God's blessing yet is living in sin according to the same bible they are trying to claim the blessings from.....  For example if you are living with your boyfriend, don't expect God to bless your finances....OK, you understand what I'm saying?  You can't have the blessings without the cost...and the blessings may not be the blessing you want. 

Selah update.....
She "stormed" a bit more than usual today but didn't require any additional meds.  She was still consistent with her reactions.  She has never regressed any since she started to progress.  Some days she progresses more than others. 

We did not get to have the conference with everyone today but we did get to touch base with all the main players individually.  ...

The social worker (who should get a medal for working with us)  has sent 80 pages to the rehab in Florida to see if she would be a candidate, we found out there is a Ronald McDonald House there that works with that rehab center.  We won't be going right away but we need to get things planned.

The therapist (who is wonderful) was great with Selah today.  She is always encouraging.  We were talking about rehab.  The rehab here requires a person to be able to participate for 3 hours at a time.  She feels Selah is up to 2 hours at a time now and progressing!  She also explained that Selah has responded so differently than most kids with NDs (near drownings)  Instead of her "drawing up" she has extended her limbs.  She told us the term for it....can't remember.  By extending it actually has helped her.  She also said most NDs begin to respond from the feet and it works it way up the body, with the head being the last thing to respond.  Selah has done absolutely the opposite.  Who knows WHY? 

The doctor (who is so focused and helpful)  came in and just sat and talked with us.  I'm going to try and convey some things we talked about...  We were told from the beginning that if there were no changes within 3 weeks from the accident, then it was unlikely there would ever be any real changes.  Well it was almost 8 weeks before we saw much of anything.  I asked about that and she said that that is the standard BUT they've seen changes in folks far out from that time frame but it was not likely.   I also asked if her delays that she had before could have caused her to be more sluggish to respond and she said she wasn't sure but it could be a possibility, although some things like the gag/cough should be there regardless.  We talked about the fish oil study  and how it might affect her and how soon,  It seems to be about a month out that the big changes start taking place but that is not to say we won't see things before then.

Tomorrow the study goes before the review committee and hopefully by Monday all her testing will be complete and it will go into her system!  I can't wait!  Then her blood levels are monitored to see when the inflammation level is down and the Omega 3 is up....and when it reaches a certain level that is when we should see change if there is going to be any..  (we think there will be)

So please pray there is no problem with the review board, that the fish oil gets here. that we go to the right rehab, and that the fish oil works!!!!   Lots of exciting stuff....

One last note, I will never forget my twins, although I never met them.  I am looking forward to that day we will meet......

Four weeks ago....

Four weeks ago, Selah grimaced for the first time, since then she has improved a little every day and everything has been a step forward not back!  Thank God!  We really did not think we'd see any improvements with her.  It was hard to hope....but we just trusted in our one true HOPE!  We knew God would substain us somehow....  there is no magic formula, no seven steps for a healing, no special scriptures to quote, no special prayers...just a faithful God to walk us through whatever life throws our way.  Selah still has a long way to go but she has come a long way.  I'm so glad that we have a God that we can trust in regardless of our circumstances. 

Today she was GRUMPY!  But that is a good thing!  She pulled her hands away when I was clipping her nails!  The great thing is she only moved the hand I was working with at the time.  I got her up in her car seat and worked with her.  She swallowed 6 times that I saw while she was up , about an hour or so.   She had two different OTs working with her since her main OT was off today, so she ended up with two sessions:) 

Jon was with her tonight and was really working with her and her mouth movements.  She got angry at him too.  Selah actually moved her face away from him when he was moving her mouth.  She was also obviously watching tv, to the point the nurse remarked on it   It's so wonderful to see her make changes and that they are constant day after day....

The doctor came in and said everything is on track with the study, she should start next Monday:)  We can hardly wait!!!   I am so impressed with Strong's and how they have worked with us!  Tomorrow we are having a team meeting to discuss everything and our future plans....I'm so thankful we can make future plans and that we have hope of recovery and are seeing some recovery now!

Tonight we have a hurricane going on outside!  Being from Florida we are used to heavy rains and 40-50 mph winds HOWEVER we are NOT used to it being in the 40's in weather like that!  BRRRRRRRR!   We ran out to mail our absentee vote and to go to Walmart around 3pm and it got progressively worse while we were out.   See our picture in the parking lot getting ready to leave to go vote!!!!

Humorous story....Sam was in bed asleep, he woke up and came all the way down the hall to where we were at!   I can NOT believe he did that!  At home he sleeps in a crib, here he sleeps in a twin bed!  So he got up and got the door opened by himself.  He is too grown!  We were laughing!!!!!!  but now we have to really watch him!

Listening to my husband talking with some families....one family had a blood marrow donor from Europe, one family had a kidney donated to their child and we had the cornea transplants from two different donors for Sam.....thank God for individuals and families who donate organs to help others!!!!!

Please keep praying for Selah!!!!  Every day is exciting!!!!!!  We never know what new thing she will do!  it is wonderful!!!!!

HOPE

Church, Red Robin's for lunch and now laundry for me, nap for little ones and Jon is at the hospital with Selah.  She is up in her car seat and Jon says now all afternoon, when she looks with her eyes, she turns her head every time!   She is such a fighter!  Her having this much head control is new, just a few days ago she started moving her head and now we are getting used to it:)   So thankful!!!

Hoping to have all the details done soon so she can start the study.  I stalked the Internet last night and found out alot of good stuff.  This study is amazing!  I can't believe it is not used more!!!  There have been 7 people treated with the massive amounts of fish oil, all have come out of  their comas with varying motor skills issues.  The one who had a brain injury that is more akin to Selah's (the miner) he seemed to have no lasting problems!   Today Jon talked with the wonderful doctor who is working on the study at Strong's.  She is working to get the study pushed through and thinks Selah will start the fish oil by next Monday.  It usually takes about 3 MONTHS to set up a study and they are setting up a brand new (to the hospital) study in just 2 WEEKS!  That is amazing!  Have I said how much I like Strong's Hospital before???   We will be having a "tean meeting" on Tuesday at 2 pm.   This will be a much happier team meeting than some we have had!  Some were rough, to say the least.  With this meeting, I am looking forward to it!

You know that old saying "the harder the fight, the sweeter the victory!"  it's so so true!  We prayed & hoped for recovery from the beginning and would have been thrilled with it BUT having to walk out our faith through the darkest of days has strenghten us.  It makes these little victories mean so much to us.  As I've said many times, God does not bring bad things on us, we live in a fallen world but He can be there with us through the heartache.  Nothing is sweeter than God's presence in the darkness!  Nothing!! 

We still don't know what is going to happen but we do have hope that Selah will recover some more!  We had been told a few weeks ago (before much had changed) that we could expect a little recovery in the next 6 months to a year but only a very  little brain stem recovery was expected.   I asked one of the staff last week if what we were seeing was the "very little recovery" and that staff said NO Selah was having consistent daily recovery of skills, that was building step on step!  It's happening faster than what would have been expected:)  You know I clutched that close to my heart!!!!!

There is so much thankfulness in my heart, you just don't know...we still don't know what the final outcome will be nor how everything will work out logistically for us to get home...but we know that God is on the throne and in control.  He has worked many miracles for our family in the past year....soon (Nov 6th) will be the anniversary of me "refinding" Sarah's picture and staying up all night...and then us beginning her adoption.  God has had complete control in our lives over the course of this year.  We've felt like clay in His hands...  We had no idea what was ahead but with each step, God was with us! 

I want to thank our home church Grace Church for supporting us emotionally and spiritually through this year!  Everyone got involved in our adoption, whether they gave, came to the baby shower, fed our animals, took care of the church grounds/church while we were gone....and NOW....we have nothing but support, the church is thriving, (we are a small church but a faithful one)   we've had friends fill in for us and we are thrilled to hear all the good reports.  Not one person has complained or whined about us being gone....thank you all so much!  God will bless you for having a heart for orphans and former orphans and for your pastor!!!  We love you all!!!!!

Today is 12 weeks since we arrived in Rochester....12 weeks of trusting God and leaning on Him in a way I've never understood before.   I can say God is Good!!!!    But I want you to know, EVEN IF things had not improved, God would still be good!!!!   I can promise you I had very little hope of Selah's recovery in the beginning.  I didn't go around claiming her healing....oh I prayed....but I didn't try and say I just knew God was going to heal her and that the doctor's were wrong.   I wanted her healed (and still want it to continue) but looking at her still little bod, day after day, was enough to make me wonder if the Emergency Room Doctors had tried too hard in bringing her back!   But I held on to God, NOT God's promises, but GOD Himself!   I determined I would not charge God foolishly, and I would not put Him to shame.  Not that I thought that would be some key to bring her back.  I knew that Life & Death is in God's hands and I had no control over that.   But I determined for my sake, my husband's sake, my family's sake, my church's sake and for the witness I would or would not be that I was just going to lean on Him!  I've gone through another valley (that I'll be blogging about soon) where I did charge God foolishly and hardened my heart....I did NOT want to repeat that valley and the consequences of that valley!

Over the years, I've read many different Caring bridges pages, of people we met over the years, friends of friends, etc... Unfortunately many of the children & adults I have followed have passed away.  Honestly I'm absolutely am not reading anymore of them but I'm still following a few that I've known for years.  The posts have been extreme, from families claiming healing and being devastated when their loved one passed, or  families who had gotten very bitter and a very few that really inspired my faith in God.   One that I am reading right now, is so sad and bitter.  I am not judging anyone, I've certainly been very bitter in my life before so I can't point fingers or say someone is a bad person....but it is sad.  Why do we humans, carry on with our lives doing our own thing BUT when tragedy hits, all of a sudden it is God's fault???  We don't thank him for all the easy years...but boy do we lash out when life gets hard.  Instead we should throw ourselves on God!  What a different experience I've had with Sam's entire life and Selah's accident, than I had with the twins. 

Can I just ask you, read the BIBLE, see that God doesn't promise us a rose garden nor a perfect life.   Read and understand WHY sin/death entered into the world.  God didn't cause it, man caused it.   But God is the One who walks with us through the valley!  Isn't that amazing that we can serve a God who will be with us through the hard times?  What a wonderful God we serve!

Link to the CNN story on fish oil recovery!!!!!

http://www.cnn.com/video/#/video/health/2012/10/22/sgmd-omega-3-tbi.cnn

Finally found the video on the fish oil recovery!  Can NOT wait to get Selah started!!!!!!

Ukraine's Forgotten Children (BBC4 documentary) HD

I encourage you to watch this video.  It is not where my girls were at but it explains many things about orphans in Ukraine and how much need there is!!!

Saturday night Selah update!

Selah had another great day.  No storming for more than 36 hours.  She is averaging  a storming session about every two days now.  That is great, there was a time when it was almost constant.  She has come a might long way thank God.  The good thing NOW when she storms, it is generally just her heart rate that goes up.  She doesn't seem to have spikes in her blood pressure at all anymore!  It's been a couple of weeks since she has had to have extra meds!  That is huge and an answer to prayer.  Many near drowning patients only get worse with the "storms".


She swallowed several times today.  We got her up and in her carseat.  She was up for almost an hour with no head support.  Obviously the car set has a little support but it is her toddler car seat, so it doesn't have much, unless her head was to really go from one side to the other.  She moved her head side to side a lot during the time she was up, mostly to escape me!   I cleaned her ears out and she moved away from me from both sides and was not happy with me at all.  

Since the accident, we were told she could be deaf and blind.  We knew she had stated following us with her eyes and now with head movements.  We also believed she could hear.  Well today I was straightening up the room and fell over the trash can, Selah woke up from a sound sleep, jumped and made a face like she was crying!  No hearing issues here!!!

We bought these cute little animals that are kinda beanbags and can be heated in the microwave.  We use them to help her legs relax.  I found another little heat up thingy that I'm using too.  It has really helped her.  I am looking for one of the travel pillows that look like a U that goes around the neck that can be heated.  We have several we've been using but we'd love to get one that heats up.  If anyone can find one, let me know.  She is much more relaxed.  Her arms and hands are in really good shape.  Her legs are much better but not back to normal.  At one point, her knee literally were so tight that they looked like they were going backwards.  Like the kneecaps would come out the back of her legs...OMG that was so hard to see!  She is much better than that now!!!!  Her ankles are movable but her toes still point down but she can be worked with now,  At one point, they were telling us to prepare for the stiffness to get worse and that the meds would probably stop working1!!  Thank God we are far from that now!!!!

I need to find oneof the neck pillows  in a store...on top of everything else, our debit/credit card got comporomised about a month ago at Walmart so it was cancelled. Thankfully our bank has a business relationship with a bank here so we can withdraw money but we can't get a card until we go home and go into our bank.  So I can't order anything on line

Thank you friends, I have 2 friends sending me one!  So she will have a spare:)  thanks so much!!!!   Heat is something that is used in the rehab hospitals, I didn't know it but started using it with Selah on her legs and her therapist told me that was what was used to help a rehab patient's limbs relax before therapy.   That was cool.  I'm always trying to think of things to help her.  All the years with Sam has taught me alot too and we have all kinds of therapy things back home...but I'm not there yet:)

We are still waiting for her to get started in the fish oil study.   Both doctors seem motivated to see it happen asap but there is red tape to get through....  can't wait till it gets started!  I keep meaning to go through some articles about it and post some of them, I just haven't had time to lately but soon!!!!  There actually have been 7 brain damaged individuals in the study (the two in the article were the big stories) but ALL have seen significant improvement!  I am going to read the studies tonight (maybe)

We are bracing for a storm!  It's been cold and drizzly up here already thanks to a front in the area but we might (oh I hope) get hit by a snow storm!!!  We want to see some snow!  I 'd love for the boys to go snow tubing!!!

Please request prayer tomorrow for Selah, pray that this progress continues and that the fish oil study will be started without a hitch and it will work perfectly for her!  thank you all!!!!!!!