Sunday, October 14, 2012

Sunday update

Selah was more quiet today but she did enjoy her mouth swabs and she licked it every time!  The nurse saw it and was amazed that she could move her tongue like that.  The nurse was encouraging!  One good thing is Selah has not "stormed" for two days!  Her heart rate didn't go crazy when I got her up and worked with her.  She was more tolerating of me moving her arms and legs and her arms were very easy to move.  Her legs and ankles were less rigid than they have been so that is a good thing also.  Please continue to pray for her!  We treasure every little positive thing! 

Please pray for a member of our church, she just found out she has a non cancerous tumor in her stomach.  She is a sweet women & has served God for many years faithfully.

Thank you for all your prayers!!!

Saturday, October 13, 2012

Update on a cold and rainy night....

Jon was with Selah today and I was doing 5 loads of laundry....we wanted to ask the nurse to do a gag/cough test on her to see if she'd respond.  The nurse did it and she didn't cough or gag but she clearly didn't like it.  We were disappointed that she didn't respond to it by coughing or gagging.  But she did respond to Jon today in the same way as she had been doing. She again seemed to banter back and to with him.  Today she seemed like she wanted to get out of our car seat and back in bed.  We use her car seat instead of the "therapy chair" it is much more comfortable and has a better head rest.  But she got tired of it and Jon could tell once she was back in bed she was happier. 

We went out to eat with some great friends tonight then we went over to the hospital.  Selah did two new things for me.  When we got there it looked like her mouth was dry so I wiped it out with some lemon flavored swabs, she LICKED the swab with her tongue, several times!!!!!!!!!   We were laughing at her:)  She really responded to it!!!!!!  Then as we were leaving for the night she STRETCHED!!!!!!  Now that might not seem much to someone else but it was a different , more relaxed movement than what posturing is!  Also her arms/hands were relaxed and not clenched, as well as her ankles/feet.  Her knees were really stiff but overall she felt better than usual.  This new movement was so different than posturing.....it looked just like when a newborn stretches....

So I'm sharing each new thing with you all but I'm being honest.  I wish she had the cough/gag response.  I think the doctors would be happier with everything if she did that since it is a basic response that she should have.  Please pray that she will get her cough/gag response back.  That would be a great thing!!!!!!  Thank you all for your prayers!!!!! 

A VERY HAPPY 23rd Anniversary!

Jon and I got married 23 years ago...we eloped and got married at the courthouse after knowing each other for only one month:)  We had slightly known each other in a class two years earlier then got reacquainted when I applied to work at the Talbot House where he was the director.  It was truly love at first (or second) sight.  I didn't really have alot of family and it just seemed right to us to elope:) Crazy but right.... Our life has been full and interesting to say the least....I've never been able to say we had a boring marriage:)  We've been all over the world, had crazy adventures, some hard times and some deep heartaches but we were definitely meant for each other.   We've learned to watch each other's backs and be a "unit" something that is really important in the ministry!!!  Marriage only gets better with time! 

Today we went to Niagara Falls, ate lunch at Denny's (we do that every year) and walked around on the American side.  We had planned to go to NF before all this happened and we don't have USA passports for the girls yet so we didn't bother bringing ours to go to the Canadian side.  NF is one of my favorite places on earth.  When I look at the majesty of it and the beauty I can not help but think how beautiful heaven will be!  It takes my breath away to see it and we've gone there now many times. 

We had so many nice surprises today.  When we got up, one of the other families who works for a certain bakery store had left us a couple of boxes of my favorite snacks!  And we had some cards and a gift card for Applebee's (which we used tonight)  And a cake from the RMH....BUT the biggest gift was from Selah!!!

Jon went over when we got back form NF.  He called me to tell me that he "bantered" with Selah.  Selah didn't really talk before the accident, she babbled like a baby.  But we would make her noises and she'd do them back to us.  Well today Jon made some of her noises to her and she opened her mouth and tried really hard to make them back to him.  This went on back and to for about 30 minutes which is the longest she has ever stayed engaged with us.  The longest time by far, the most before was maybe 5 minutes and she usually was upset when that was happening.  She had seemed to do something like this when she was upset over the last few days even with tears but this time she wasn't upset!  She was almost playful.  THEN she did something we have not seen since the accident.  She began to move her legs.  Now she has had movement called "posturing" which is not good movement.  It is movement that shows a person has terrible brain damage.  Basically all the limbs move at the same time in a kind of drawing up movement.  This was different, she moved one leg, then the other leg at different times and nothing else moved!  That was HUGE!!!!!  She has been much more alert just in the last couple of days too.

We are thrilled!!!!   To be honest, we are trying to stay balanced here, we've been told there could be slight improvements but not to expect any type of change from the cortex part of our brain, just maybe some changes in the brain stem activity.  This looks like above the brain stem to us.   One thing we had also been told with Selah since she already had development delays, it made matters much worse as far as possible improvement.  We had also been told since she went so long with no change, that made things even more bleak.  Usually if they don't see change/some recovery in 2 or 3 weeks after the accident , chances are the recovery is not going to come.   Doctors tell us these things, because that is the way it usually is, they see it all the time.  When I worked as a probation officer, I'd have folks say all the time that they would never get in trouble again and you knew....they probably would....  Why did I know it?   Based on experience...so that is why the doctors tell us these things, it's based on what they have seen and experienced with the brain and near drownings.  They don't tell us these things to upset us or make us cry but to prepare us for what the probable outcome will be.  I truly get tired of negative remarks about doctors, they are not all bad.   I can accept that diagnosis based on medical facts BUT I know we and so many others are asking, begging the God who created this Universe and everything within it, to touch and heal Selah.   When I looked at the scenery today, all I could think is that I know the One who created Niagara Falls....He walks with me through the valley of the shadow of death and I am not afraid!   What a comfort!!!!!

We still don't have our plans for moving Selah.  During this whole time, I've not been in a hurry for her to be moved back to Florida.  Our family is here together and where my family is, is home to me.  I don't' get homesick at all.  We feel she gets better health care here than she could in Florida.  Then last week when we thought we were actually going to go, I started getting ready to go and was looking forward to going home.  But honestly I have truly learned to be content and I'm fine, even living in this rather uncertain state...seems like I've been in that particular state alot this year LOL!  We had to be really flexible as we waited to go to Ukraine and then again once we were in Ukraine....then we waited on the kids' appointments to come up here....really having to "go with the flow"  So I'm fine with that...who knows what is going to happen now?  Maybe she will recover enough to go into the rehab hospital here...?    I do have some friends working on the situation in Florida and I have a few plans if that doesn't work out of getting the media and our congressman involved if necessary but hopefully it won't be necessary! 



We are just trusting God tonight....thank you for all your prayers, please continue praying for our sweet Selah.  She has a long way to go.....we are so thankful for the small steps she has taken and are just praying that they continue!!!!!!

Thursday, October 11, 2012

Encouraging Words

Today we had some positive comments.....

Her OT (occupational therapist) said that she is seeing good signs in just the past few days.  She sees little glimmers of Selah:) 

Then when I went over tonight, she was more awake than usual.  She seemed to be opening her mouth like she wanted to babble at me (she didn't talk before this, just baby babble)  She didn't seem upset and ehr heart rate was normal when she was doing it.  Then she started sticking her  tongue out....well she used to do that when she wanted a drink!!!!!!!!!!   So they brushed her teeth and wiped her mouth out and she quit doing that,  (she can't drink right now because she doesn't have a cough/gag reflex)  The nurse thought that was also what she was wanting.  The nurse hadn't worked with her in over 2 weeks and she was just amazed at how much more engaged Selah was with us!!  She also said that others are saying the same thing.  What a wonderful uplifting way to end the night:)

We have never gotten such encouragement since this journey started!!!!  

Today I spoke to the person who coordinated the study Selah was participated in at the beginning when she was on cooling sheets to lower her temp.  We have some paperwork/interviews to do as part of the study.  The coordinator assumes that she will be unable to come back here next August for the follow up appointment at the one year mark.  No one expects her to be able to travel or change from where she is right now, but something just rose up within me and I could see us returning with her and her being back to normal....  time will tell.....

Please keep praying for Selah!!!  She still has a long way to go but she is headed in the right direction, 

Ronald McDonald House Thrift Sale

A reminder for my readers who live in this area...

Ronald McDonald House is having their annual thrift sale at a warehouse located at 773 Elmgrove Road.  It's right off of I-490, really easy to get to....

today it's open all day and from 5-7 pm everything is 20% off
Tomorrow it's open from 10-4 and everything is 50%
Saturday is fill a bag for $7!

We went yesterday and I bought some sweaters and a pair of jeans for me and Jon, a case for Steve's game system, a Lego Xbox game,  and some great books all for about $40!   What a fun way to help and all proceeds go towards their yearly budget.  Ronald McDonald House of Rochester NY ROCKS!  They are such a great organization...if you can't make it out, think about giving to them so families can be helped. 

You can give by sending a check to
 RMH
333 Westmoreland DR
Rochester NY 14620

All I ask if you give, give in honor of Sam and Selah....I'd love to hear that RMH got a huge donation in their honor!!!!!!!

This house and the one in the hospital that we stayed at for weeks stays packed, so many stories, and families on difficult journeys....no one is here on a vacation.  The staff and volunteers here are beyond awesome, you just have NO idea how we are loved and cared for!!!

So if you can help them in any way, know you are helping so many many families who come here not knowing what their outcome might be,  It's so much more than just a place to stay.  If we could afford to stay in the nicest hotel in town, we'd be alone...here we are surrounded by loving people, it lifts our spirits so much. 

We are so thankful for the Rochester RMH!!!!!!

Honoring God

Tonight I sat by Selah's bed and just cried out to God for her.  This journey has been hard for us but I can't even let myself think how hard it has been for her.  That is what breaks my heart.  Doctors tell us that she basically knows nothing ...sometimes I hope that is true but I don't think it is. 

Driving back tonight in the cold, I couldn't help but contrast the seasons...when we came in early August, it was still summer, one of the hottest in the Northeast, we all were wearing shorts, school still hasn't started...now it is winter ( at least for us! ) The temps are down into the 30's in the mornings, the leaves are falling, some trees are bare already,  there possibly will be snow flurries in some areas up here in the next few days, school has been going for almost 2 months back home.  Eight weeks have passed, our lives have been turned upside down, the season has changed....the only thing that remains is God's faithfulness....

Honestly, I just miss Selah. I prayed that God will return her to us, our Selah.  She is so beautiful & precious.  She was so funny, the perfect child for us.  What a joy she brought us.  So tonight things were quiet and I was able to really focus and pray.  There were so many precious things that God had dropped into our hearts in the past few months.  I don't know what the future holds but I'm thankful for the things that God has given us.  God has been faithful to us,  He will continue to be faithful to us.  All I can say, is God has always been with us.  He will continue to do so. 

I've been reading a book that was sent to me "Faithful Women & Their Extraordinary God" by Noel Piper.  (thank you so much to my friend who sent to me!!)   I'm a speed reader but I'm taking my time with this book.  Today I read the first chapter, it was about Sarah Edwards...let's just say I do not measure up in any way whatsoever.  Sarah (love that name!) was the wife of Jonathan Edwards...what a life, trusting in God completely...what trials she faced, died in her 40's right after her husband died....both died trusting in God.  I'm going to reread it again tomorrow.  Right now, I find it hard to concentrate on anything (that's why I've been reading Nancy Drew  doesn't take much attention LOL)  It's amazing to read of a woman, over 300 years ago, who faced uncertain times in her life and yet she trusted God through it all.   One story that sticks out to me is the story of how her daughter Esther when her husband died wrote to her mother, Sarah, asking for her parents to pray that  she would not faint under this severe stroke...she was afraid that she would dishonor God...through the trials of her life.  That really spoke to me.  I want to honor God through the trials of my life & I do not want to faint under this severe stroke and that encouraged my heart that a woman over 300 years ago had the same desire....

My desire is to honor God through this trial.  God is a faithful God, one that is trustworthy.  I've not always been faithful to God through trials.  Sixteen years ago, this month we lost twins, that was a trial that I did not honor God as I walked through it.  It took a few years before  I chose to trust God fully in every area.  Then we had Sam....I learned trust....  Trust has always been an issue for me.  Having grown up very self reliant, I didn't trust God fully.  I felt I was a "self made woman"  and I was.  I could make things happen, find work or whatever I needed to do.  Then we lost the twins and I couldn't do anything to fix it.  I am a fixer!  OH I was sooooo angry!  Angry that I couldn't do anything to change things at all.  Angry at God, angry at the world....so me and God fought for a few years....LOL or I fought for a few years.  It was a rough time....but I grew through that.  I finally began to learn trust in God, something I had never known before although I'd been a christian really most of my life.  Then Sam came...  I got a crash course!   Seems like the crash course has continued now for about a decade and I'm in my final exam! 

I'm a very opinionated person and rather firm (lol) when I make up my mind.  I've been called blunt and alot worse at times.  The only time I'm gentle is with my family.  So when I'm dealing with situations, I'm not a meek gentle woman (to say the least)   I don't think I have EVER been described as a gentle woman in my life!  So in reading Sarah Edward's story, I can't help but think we don't have that description in common but I have a bulldozer, bulldog faith....that's what my husband calls me.  A bulldozer cause I will push down whatever obstacles are in my way and just keep going and a bulldog faith cause I will just hang in there.   Truly I like that description better than him saying I am a gentle woman (LOL)   But I do pray that I (we as a family) will honor God in this journey.  I want to be an example, of someone who walked through a trial trusting in God.  NOT so I can be seen as some huge woman of faith (gag me) but that GOD can be seen as the faithful God that He is....and if He will do it for me, He can do it for others!  What I mean is NOT necessary walking through this getting the miracle we want but just walking through it hand in hand with God. 

It means alot to me when I get messages and emails saying that our journey has encouraged others in their walk.  We all go through different things but we can encourage each other as we go through life.  I would SO MUCH RATHER have my old life back, than for any of you to even know my name, please understand that!   I sometimes get a bit angry when people ( who are not going through a trial)  say things to me "like you never know how many lives you've touched"  because I'd rather NOT touch any lives, I just want my baby back, along with my sweet life of being a busy happy mom!!!!   But on the other hand, I am grateful that I've met others who have their own journey that they are walking and we can walk side by side by a little while and encourage each other, in this journey called LIFE.  It's a hard balance to think about.

 Last Sunday Pastor Bob at Calvary Assembly of God in Chili preached on "Stamina" What a good sermon for us to hear!! Now I have heard hundred of thousands of sermons over my lifetime, if you include Sunday School and Bible College and not too many stick with me but boy did that one resonat in my heart!!!  That's what I need to hear! 

So again I ask you for prayer....please please pray for our little girl!  And pray for us that we will "finish the race that is set before us"  We all have our individual stories and our own race to run.  My race may not look like yours...and your race may be different than mine but let's run it.  Pray that we can run our race," looking to Jesus the author and finisher of our faith".....