Friday, August 31, 2012

Friday

First an update on Selah. Her kidney function is perfect, still has fevers, and high blood pressure. Please pray that the fevers go away. We can't go any further right now until that is cleared up. There is such a question about where the fevers are coming from. I know we wouldn't be comfortable with her having surgery for the trach and feeding tube with her having them.

Today she seemed to respond to Jon. He made some of the sweet little noises that she used to make and she turned her head to him as he moved around the bed. It also looked like she moved her shoulders when he would say to her "come to daddy Selah". I'm sure the doctors wouldn't think it was purposeful movement but it looked like it. We try not to get our hopes up too much as there is so much other things she is not doing but we can't help but hope that her little personality will come back to us!!!

Since she was stable today, we went and got Jon's new glasses. He lost them in the accident. This time he had to get bi-focals and is trying to adjust. It was so odd to be at a mall. I think I was in shock, everyone was so loud and the colors were bright! There just was so much going on, it was overwhelming! I did finally get my hair cut. It needed it before we left Florida but I never had time to do it and thought I could just do it up here. Well.....one day since everything happened, I used the dull scissors from RMH to cut my bangs...I couldn't stand them in my eyes anymore, so today I finally got it fixed. Feeling alot better now lol

We came back and ate supper with the kids, thanks RMH! It was a great Taco meal. Now I'm back with Selah, Jon is doing eye drops and getting the little ones ready for bed. Every time I walk in here I have a fantasy playing in my mind that the nurse will run out and say "hurry up she is waking up" please pray for her to wake up . Jon & I were talking about that today and how somehow we still have hope for her. Please pray that she will wake up completely and we will have our funny little girl back with us.

You see, to many in this old world, she was just a cast away, not of any significance BUT to us she was a hidden jewel, hidden away in a mental institution. She was a "pearl of great price" Selah & Sarah both...worth all the tiny (in comparison) inconveniences and cost to go and rescue them. They are princesses to us. We actually thought of giving her the middle name Jewel but chose JoHannah to honor Jon's mom (Joann) She is still our little jewel. I share this so you will know how priceless she is to us and how we care for her.

Good morning

Thank you for your prayers. Selah's kidney function is in the normal range!!! She still is having unexplained fevers, her white blood cell count is going down which is good. When she has a fever her blood pressure and heart rate goes up! So we need to pray for her to quit having fevers!

Last night I stayed at the main RMH with the family and Sam slept with me. he was so happy to have me back that he squealed and rubbed my hair. We all had to laugh at him but were glad when he calmed down and went to sleep:)

I got the kids up this morning and got them to work cleaning our room and doing laundry. They are probably ready for me to leave LOL.

Please keep praying for our girl. We have some decisions to make about going forward with surgery for a trach and feeding tube with these unexplained fevers...pray for wisdom!

Thursday, August 30, 2012

Selah pictures







These were all taken in the first week of the girls being home. the bottom picture is Mother's Day, our first Sunday home.....

Memories






The first picture is of Jon and Selah and me and Sarah on the 2nd day we met them in Ukraine at the orphange.

The second picture is Jon with Selah on the 3rd day, we actually go a small smile

And the last picture is Selah her first night home, in her bed!!!!! Want her to be back there soon!!!!!!

Some Good News

My FB update

Thank God! Selah's kidney function test has come down to almost normal levels~ she still is having fever, higher than normal blood pressures and a high heart rate. Please continue praying! Big News, she coughed a little cough tonight! Not when they suctioned her but just lying there. PRAY that she will cough more and get her gag reflux back! If she did, she wouldn't need a trach~! Mommy would be soooo happy!!!

I am so happy for the cough! The nurse was in the room and heard it also, this is the first one she has had. She didn't cough when suctioned but right before. Please Please pray she will cough more!!!!

Today she seemed more alert at times. Of course we have been told there is no intelligent function there, only brain stem responds... I don't know but at times we sense she is there. Today was one of those times we felt she was responding to us with her eyes. Please pray that we'll see more responses.

Well I have been moved back to the main Ronald McDonald House with the family. There were some critical cases and she is less critical. That is a GOOD thing:) We appreciate RMH so much for everything they've done for us. In a sense I am relieved to be back with the family at night and we are only a couple of blocks over from the hospital. As much as I appreciate the In Hospital RMH, there was just an feeling of sadness there, I think I reacted to it by having the bad dreams. I am not used to being alone at night either and I think that made me uneasy also. I hope she will just continue on the road to recovery and we will never have to be housed there again. I pray for the new family coming to take our place that God will be with them. I generally stay with Selah until pretty late, last night I stayed till 1am, I was just too unsettled to leave her.

So please keep praying for her and for us. God is faithful and I thank Him for these answers to prayer. It has lightened my heart, amazing what a little cough can do!!!!!

Chosen

Chosen One

If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you...
If God had told me "this soul will one day need extra care", I still would have chosen you...
If He had told me "that one day this soul may make my heart bleed", I still would have chosen you...
If He had told me "this soul would make me question the depth of my faith", I still would have chosen you...
If God had told me "this soul would make tears flow from my eyes that would overflow a river", I still would have chosen you..
If He had told me "our time spent together here on Earth could be short", I still would have chosen you...
If He had told me 'all that you know to be normal would drastically change", I still would have chosen you...
Of course, even though I would have chosen you, I know it was God who chose me for you...
Thank you God for allowing me to be Selah's mommy!

I went back reading over my blog, encouraging myself and I found this poem. It was written by a mom of a child with cancer. I copied it and used it in a post about Sam. But I thought it was very appropriate for Selah too. And the cool thing is we did chose Selah. We could have walked away from her when we met her, she had some behaviors that scared us and made us question our ability to raise her. But if you have read my earlier posts, those behaviors soon solved themselves since coming into our family. She was chosen, we had to make a commitment to the court to take her as our child...and we would do it again despite the heartache that has come. We chose her despite her mental and physical delays and we still chose to be her parents no matter what the future holds. We were blessed to add her and Sarah to our family.

Wednesday, August 29, 2012

I know WHO holds tomorrow

Night update: Selah got an arterial line today. Hope it will last. Her kidney function test is coming down a little bit please keep praying. Her blood pressure is up! Not a good sign because with everything else that indicates kidney damage. Please pray. She still has fevers The doctors decided not to do a CAT scan as they need to do it with dye and don't want to tax her kidneys anymore than necessary. Please pray for her. Things are very serious for her right now, please pray for God's mercy

Today I spent the afternoon with the kids at the Ronald McDonald House while Jon stayed with Selah. It's always great to be with the kids but I came back here to alot of things going on. We have some real concerns about her blood pressure, it needs to come down. Her heart rate stays in the 150-160 range probably because of the underlying fevers. Her kidney function numbers are coming down very slowly but that is a step in the right direction, please pray that they will continue to come down. They need to find WHY she has fevers and WHY her white blood count is high. I believe they have tried to find an answer and have left no stone unturned but the reason seems to baffle them.

We need prayer as much as we did two weeks ago. Selah's body is fighting and tired. Please pray that God will heal her. She needs a physical as well as a neurological touch. Please pray that God will touch her heart/mind/emotions and spirit. I worry often about how she is emotionally. The doctors tell us that that part of the brain doesn't work anymore but in my heart I worry that she is afraid and feels alone. I don't know everything spiritually but I pray that God will minister to her during this time, maybe send her an angel...I don't' know, I just want her to not be afraid.

So please pray for her. Pray for our family. Jon & I have been through alot in life and we are both the type to just plow through things and that is what we are doing. We have four other kids to take care of and are far from home. God has given us the strength thus far but this is the hardest thing we have ever lived through. We need your prayers.

There is so much I could write about, at times the fear, doubt, and sadness overwhelms me like a flood. Thankfully the Grace of God is also there to help balance me out. We have been shown so much kindness by so many. Thank you all for your prayers, cards, gifts, calls, messages. texts. we are so blessed. Again thank you to the Ronald McDonald House and all its workers and volunteers. You all have reached out in so many ways to my family and shown us such kindnesses! If you live in this area and want to give or volunteer at a wonderful organization, please be a part of the Rochester NY Ronald McDonald House! They live up to their mission and then some!!!!!! Strong's Hospital is wonderful...we have been shown nothing but kindness and understanding by the staff from the receptionists to the doctors! We are so grateful to so many people!!!

So I close tonight, still placing my trust in God. I have no idea what the outcome is going to be. I am afraid of the future, whichever way things go....but somehow I can still say I trust God.

I don't know about tomorrow;
I just live from day to day.
I don't borrow from its sunshine
For its skies may turn to grey.
I don't worry o'er the future,
For I know what Jesus said.
And today I'll walk beside Him,
For He knows what is ahead.

Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand.

Every step is getting brighter
As the golden stairs I climb;
Every burden's getting lighter,
Every cloud is silver-lined.
There the sun is always shining,
There no tear will dim the eye;
At the ending of the rainbow
Where the mountains touch the sky.

Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand
.
I don't know about tomorrow;
It may bring me poverty.
But the one who feeds the sparrow,
Is the one who stands by me.
And the path that is my portion
May be through the flame or flood;
But His presence goes before me
And I'm covered with His blood
.

Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand...

Just a disclaimer....can't say I'm exactly where the first verse is LOL I do worry about tomorrow right now... But I love the last verse the most..."And the path that be my portion, maybe through the flame or flood but His presence goes before we and I'm covered by His blood" I have sung that verse over to myself many many times over the years in many situations. It's been in my mind for the last two weeks, we can not control life much to my disappointment but we can trust God through whatever life throws at us.

Believe me if you are reading this, you will have trouble in your life. It might not be the same troubles I have had but I can promise you that heartache will come. You can't get out of that, we live in a fallen world. But I can promise you there is a God who will be right beside you in every situation. I can promise you that because I have experienced it many times. Back almost 16 years ago when we lost our twins at 22 weeks, God was there. Back almost 9 years ago when we went through a difficult pregnancy to have a premature baby who had many health problems, God walked with us through all of that and all the ramifications of me having to quit my job to stay home with Sam. He was there the night we heard the words "your son is blind". And He has been with us these past two weeks. There were many other times in my life when God was with me in such a real way, bringing me peace in the midst of storms. So I can testify to you that God can be with you in whatever situation you find yourself in. He has been with me and believe me I am no saint! I'm not perfect, please don't read my posts and think I am some super christian. If you do, I have a few people who can tell you the truth about me LOL! I don't even like to pray out loud! How I ended up as a Pentecostal pastor's wife is beyond me! So don't think I'm some super duper christian, I am NOT! But I serve a God who is faithful even when I am not and thankfully I don't' think He minds that I don't like to pray in front of other people!!!

But I trust in the eternal God, who is not changed by our circumstances. If Selah is healed, He is still the same. If she dies, He is still the same, If she lives just the way she is right now for 20 years He IS STILL THE SAME! Do I blame or question God? I really do not. Do I blame or question God about Sam(being born disabled)? I can truly say I have not. Life happens, we live in a fallen world and that is answer enough for me. Have I ever blamed or questioned God about something....YES I have. After I lost the twins, I went through an awful valley...it was beyond awful for me and everyone around me. It was a long valley, several years, I had to go through my Job experience...and it was ROUGH! But God was faithful to me, and brought me through it. During that time I went back and blamed God for every heartache in my life and questioned many things. I used to drive back and to from work and argue with God in my car...it was an intense time in my life BUT God was faithful. He walked me through alot of things although I can say I was not living close to Him at all. But He was faithful. Then as I was coming through that long valley, we had Sam. I had to determine that I was going to trust God and not question Him. God gave me the Grace I needed to do that. So now I look back over those first few months with Sam when things were very bad and I can see the peace of God and the Hand of God.

So tonight as I sit with Selah, I don't even have the words to pray other than "God help us and show us mercy, heal our sweet little girl" But I know the One who holds our tomorrows and I trust Him no matter what. And I am so thankful that I can trust Him, so thankful as I face the biggest, darkest storm of my life that I have had other storms to learn from, other times when God has proven Himself faithful to me. I can look back on my almost 47 years and see how God has been faithful in many rough situations. He has provided all I have needed to face Life and He is still providing even tonight.

Tuesday, August 28, 2012

Prayers Needed!

Selah's kidney function numbers have climbed a little higher so we need prayer! She is peeing good so the doctors are not overly concerned at this point but it is not a good thing and the numbers need to go down since she is off all meds that might have contributed to this. Please pray that her kidneys will continue to function and heal themselves. The doctors are sending her for a CAT scan tonight to rule out any brain/sinus abscess that might be causing her fevers. They are very good here and do check on everything. I'm sure we will also learn alot more about what her brain looks like now which might be hard to hear....

Still looking into the possibility of stem cell therapy for her.

Please pray for Selah. Pray that she will heal physically in all areas. Thank you for your prayers!!!!!!

Kidney Function!

URGENT PRAYER REQUEST! Selah's kidney function is not good. Please pray that the numbers go down. she has been taken off of all meds that might be contributing to it. The numbers just went up they have been good till now!!

She also will have to have a blood transfusion. I was hoping to be able to give but she needs it now and it would take awhile for me to go through the process ( I'm O neg and a universal donor, we don't know her blood type but I could possibly give) We are still excited about the stem cell research and are looking into it but now we have some issues that need to be resolved. Please Please pray about her kidney function. This is very serious!!!!!!! She also has the on/off fevers with no real known reason but her white cell count is high. Please pray for our sweet girl!!!

Monday, August 27, 2012

New medical procedure....

http://www.24-7pressrelease.com/press-release/stem-cells-repair-brain-damage-umbilical-cord-blood-and-developing-tooth-buds-contain-stem-cells-that-can-change-lives-stem-cells-from-developing-tooth-buds-offer-a-second-chance-for-stem-cells-165096.php


I am excited about this article. hope you can click on it. I already have an email in to the doctor and will be tracking him down tomorrow. Please pray this is something that can help our baby girl! We have always tried or looked into things for Sam and I'm using those skills now. I know some doctors here think I may be clutching at straws but I know some doctors in Florida who thought that about Sam's corneal implant five years ago and now five years later our son can still see some. He went from 20/400 to around 20/100 and even better if he wears his glasses. That is a HUGE difference and it didn't' happen with us sitting around wishing...I had to look and call and go a thousand miles...but it was worth it. Now we have that experience behind us and we know now sometimes you have to push through and find things that may work for your children.

So pray that our sweet girl's fevers will stop and she will overcome this infection and that God will open the door for her to get this procedure if this is what will help her! I have to say I am incredibly excited and hopeful! We already have one little medical miracle in our family, ready for Selah to be the next one!!!!! Last night I just got such a peace about everything and felt like today would be a turning point for her. Learning about this, had certainly excited us and given us hope.

Our ultimate HOPE is in God, the creator of heaven and earth but we have always been thankful for the compassion and wisdom of doctors and always have given the ultimate thanks to God for the skills that our son's doctor has. I believe that most doctors, especially ones who have big medical breakthroughs, have hearts of compassion, and want to ease suffering. I know we see that in our son's doctor, Dr Aquevella.

So pray for us as we get more info!! Thank you!!!!

Cord Blood Study

Just found info about a new procedure where cord blood (from umbilical cords) is used to treat brain injuries like Selah's. I hunted down a couple of studies, she wouldn't qualify for either. One is for people over 18 yrs old, the other is for children who have banked their cord blood. PLEASE pray that we or the doctors here will find a study that will accept her!!!!! If you have ANY info on this please contact me!!!!!!

I read a medially documented case where a child was without a heart beat for 45 minutes and is now back to normal thanks to this! It was by using her own banked cord blood but why not use a donor's?

Please pray that we can find a study!!! One of the doctors here was hesitant but we learned a LONG time ago to be aggressive and not to sit back and wait on anyone to find us help. I reminded him that we would have a son who had no sight if we hadn't pushed and looked for something "experimental" Nothing ventured, nothing gained is an old but good saying!

So if you know of anything like this, please let me know. Thanks!

Update Monday morning

Selah had a good night sleep and so did I for the most part. Had some crazy dreams but not scary ones. Up to face another week.

Tomorrow Uncle Jim goes home home so we are going to take him out to eat tonight. He cam all the way to NY and has basically seen the inside of the Ronald McDonald House and plenty of diapers LOL. Things are going to get a little more complicated with him gone and we will miss him.

This morning I looked all all the places people are reading my blog from and it is amazing! Please keep praying for LaLa (Selah) and lifting her up to God to touch her and raise her up! Last night she seemed more responsive and I talked to her for awhile and told her how many people love her and are praying for her. Thank you so much.

Thank you for all the blessings. Yesterday we came back from church and found a bag of nice warm stuff (sweat pant/shirt socks slippers and a heating pad from Gates Assembly of God and a card with various gift cards from folks at Calvary A/G! Some great friends took us out for lunch yesterday after church...we just feel surrounded by love...thank you for holding our arms up in practical ways!!! And I slept WARM last night!!!!!!!!!

Friend from Germany

If by chance the lady I met in the Brandon Mall who is from Germany reads this, will you please get in touch with me?? theclanton5@aol.com

thanks Yvonne

Sunday, August 26, 2012

It is Well with my Soul

Update:

Selah's fevers are continuing. Nothing seems to be helping. With meds they will go down but she can't keep them down. She has MRSA and her white blood counts are up. She has "something" on her arm, probably a blood clot and the redness is growing....she needs prayer now physically as well as neurologically!

Sitting here listening to the group SELAH "Greatest Hymns". they sing several songs on there that just speaks to my heart. One of them is "It Is Well With My Soul". The writer of that song lost his children in a shipwreck in the Atlantic Ocean. The ship and most on board were lost. His wife was rescued but not his daughters. On his way over to Europe to meet up with his wife, his ship's captain told him when they were at the place where his family's ship went down...He wrote that song based on that experience.


When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

Refrain:
It is well, with my soul,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.


My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!


For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.


But, Lord, ’tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul!


And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.


Sources: •Faith Publishing House, Echoes from Heaven, 1976 (168)
•Anonymous/Unknown, The Blue Book (199)

The last verse means alot to me....this situation turns my heart toward eternity even more. I understand that father's anguish as he penned those words... Before all of this happened, a few weeks ago I dreamed about the rapture. In my dream I was holding Sarah and saw the "the sky roll back like a scroll" it was an amazing dream. I'm looking forward to that day!

Across from the hospital is a very large cemetery. We've often wanted to walk through it, but haven't got the chance to. It's a reminder as a patient. a visitor, or staff comes out of the hospital, they face the cemetery...I've found it funny over the years in my sarcastic way. Now I look at it and think "death where is your sting" when this life is over, our heartache is ended...what a comfort. (don't' worry I'm not suicidal at all I just find it a comfort that one day life's trials will all be over) I think the old hymn writers spoke of heaven so often because of life's trials and tears on this earth.

Last night sitting in Selah's room, I read over my blog, since so many who don't' know me are reading it & it makes me wonder (and worry) about what all I have written :) But I loved reading the adoption posts and the posts since we've been home. I am still a blessed mom with the best kids in the world. I've experienced heartbreak but the joy does win out. I needed that reminder to myself.

So despite it all, I can still say "it is well with my soul" "But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed"

Please keep praying for Selah, I still have hope that there will be a change neurologically....but it is so hard. Pray for our family, there is just this huge empty space without her, we miss her being with us so much. I am so thankful I never took a day for granted with her, the girls were so new to us, that every day seemed like Christmas to me when they got up:) It was just fun! I want that again, I want all of my kids home and healthy. I want to have to rush to cook them breakfast...and get them dressed...it's a honor to be their mom. This summer has been incredibly sweet, getting to know our two princesses! I want to go back to that.

Don't take your family for granted, no one is promised tomorrow. Hug you kids tight, be thankful for everyday annoyances and work. I wish our only problem was getting the laundry done...



Saturday, August 25, 2012

MRSA




Just two Saturdays we were in Mt Airy NC, cutting up and having fun with all the Mayberry props and stores....wish I could turn back time!!!!!!!!


Selah has tested positive for MRSA & her white count is up. PLEASE pray for her! This is serious!!!!!!

Thank you all for your cards, letters, gifts, messages, texts, calls....each one has lifted us up and let us know that we are not alone.

Friday, August 24, 2012

Missing Selah

Selah is still having unexplained fevers, she has been checked for everything you can think of...the fevers make her heart rate go back up into the 150's.

Today was just a sad hard day. This evening we went to Walmart & picked up a few things for the kids then we ate supper with them and I gave Sam and Sarah a bath. I laid down with Sam for awhile & he kept hugging me, that was so nice! Jon is staying over there tonight, his back has really been giving him fits again & I think that bed works better for him. We don't' want another problem with his back! Plus Sarah is crying some at night which is not like her. I think she misses mommy & daddy.

Thanks for all your prayers, we really need them. We are still praying for our girl to wake up. I miss her so bad...I can't even describe how much I miss her and her funny little ways. I'm so angry that we only had 3 months with her before this happened. She's been through Hell in her short little life & finally had a family and we had our girls...now...it's just awful!

These past three months have been the happiest of my entire life. I told Jon several times that I'd never been happier. I can remember just being in the laundry room & thanking God for my life, telling Him how content I was and how blessed. Jon said the day of the accident he was thinking that Life was just so good....now I truly can not imagine being really down deep happy again. My little girl is in a coma, with so much brain damage she can't even swallow...without a miracle from God, this is where she is. It's hard to imagine that just a few days ago she was running & playing and getting into everything! I want my Selah back so bad! Please keep praying. I've never asked God for much, just for my kids...and I'm begging for my Selah to come back to us. It's seems like for some reason, that has been the area in my life where I've had the greatest joys & the greatest sorrows. I don't understand WHY we have gone through so much, I think I've had my share of heartache in life and them some.

I was thinking today of everything and for some reason God has not chosen in the past to deliver us from situations but He has given us the grace to go through situations. This time I am begging God with all that is within me to deliver us from this! but I pray that we will be like the three Hebrew children who said "Oh King Our God is able to deliver us but even if He does not do so, we won't bow" Please pray for deliverance for our child. Pray that god will bring her out, restored to herself. Selah was very delayed, around a 12-18 month level, although she was 8 yrs old. But we adored her right where she was! We'd give anything to have that little personality back! Please pray!!!!



Thursday, August 23, 2012

Meetings

Today we met with Dr Aquevella on Sarah's MRi and possible surgery. Sarah has a "kink" in her optic nerve as well as some problems with her retina. Her retina is very uneven, think in some places & thicker in others....so those two things do not make her a good candidate for corneal implant surgery. We had decided if the risk was more than 50/50 we were not going to do it. Well it's alot worse than 50/50 so we have decided not to do the corneal implant. There is some sadness, because we desired to give her more sight since the day we first saw her picture. It was our dream for her to be able to see as well as Sam does.... But on the other hand she will not have to go through with surgery and aftercare/pain and in one sense we are relieved. she has a little sight and she does enjoy and use it as much as she can. We think she sees light and colors. If we were to do the surgery & her eye couldn't handle it , she would probably go black/blind. So we will work with what she has. She is such a joyful little girl, she doesn't know the difference & isn't grieving this. We are sad but think it is the best decision.

We also had a serious meeting for Selah to map out the future....She still is having fevers but once they are under control, then she will have the trach and g-tube put in. She will also possibly have dental surgery here . We were planning on having that done back home as she needs extensive work. We have a very long road ahead. when she is released from this hospital, she will be moved back to Florida and will first go to a hospital or a re-hab as we get our home ready for her. We will probably have to add a room for her, so she is more secure and can have nursing in there. It's alot to take in....

So please pray that the fevers go away. Pray that she will be able to get her trach & feeding tube in with no complications. Pray that she will show enough response to be put into their 3 hr daily rehab program. I'm not sure that she will qualify. Thank you for your prayers!!!!

What a day this has been.....

Looking forward to another day, an eternal day. Remember the old song...

"What a day that will be, when my Jesus I shall see, When I look upon his face, the One who saved me by His grace. When He takes me by the hand & leads me to the Promised Land, what a Day glorious Day that will be....

There'll be no dying there, no more burdens to bear, no more sickness,no more pain, no parting ere again, &forever I will be with the One who died for me, what a day Glorious Day that will be!

Believe me I am looking forward with much hope to that day, tonight...

Dream

Last night I had such a sweet dream. I dreamed we were home and it was storming outside and Selah "woke up" and started pulling her wires off and sit up in bed. She couldn't walk but she was Selah...what a a wonderful dream.....

Now I'm a cautious person, I don't go around claiming things and I'm not going to say that dream was from the Lord. I've had a couple of dreams in my life that I did feel came from God and I am not sure if this is one of them. It may have just came from deep inside where there is still hope...but it was a comfort to me.


After being in the ER all day, Jon was diagnosed with something like acute acid relux and given several prescriptions. He is feeling much better today.

Last night I ate supper with the family and was there to work on eye drops...no matter what is happening eye drops go on....LOL Anyhow it's so good to be with our family, like a salve to my heart. At one point, Shad, Sam and Sarah were sitting on me or leaning against me...it felt so so good!! The kids are doing great. Uncle Jim is with them, with a new appreciation of diaper duty LOL. Steve, as always, is a great help.

Selah is stable. They had done some cultures and she is responding to the antibiotics, hopefullly her fevers will soon be gone. yesterday she did keep one eye completely open and the other somewhat open. We are praying that she will have a gag/cough reflex as well as a response to the corneal test...Please pray for that for her and pray that her fevers are gone. Obviously we don't know what she is thinking but pray that god speaks to her little heart while she is in this state. A friend had given me a CD some time ago and I'm glad I had it in the van. it's the group called Selah "Greatest Hymns" we have kept that on for days now and each song speaks to my heart and I hope to her heart too.

Just continue to pray....thank you so much!!!!!!!! I may not return every call (or any-I'm just not good on the phone right now) I might not text, or hit LIKE on everything on FB since I don't have alot of time but I am unbelievably grateful to each of you who are praying. reaching out, we just feel covered by love....

Wednesday, August 22, 2012

Change in Plans

Today we were not able to meet for our conference. Jon was sick all night but didn't wake me up. When I woke up, I took him down to the ER. He has acute reflux/acid. He was having awful burning stomach pain. It's some better now thanks to some meds. Due to his family history of heart issues & the past week, they are holding him another 6 hours to make sure all his bloodwork stays stable.

Please pray for my sweet husband. He is seldom sick & always tries to keep a stiff upper lip....With all his back issues, he never missed a day of work so he hates that this has happened.

Selah has her eyes more open than ever today which is nice but she still doesn't respond to the cornea touch ( she should jerk her head away or at least close her eyes, nor does she have the gag/cough that she needs. She has a little fever off & on still so please pray for her Thank you all again!!!!!!!!!

Tuesday, August 21, 2012

Trusting

We got a good night of sleep last night (thank you Tylenol PM!!!) & we were able to have a good talk this morning. Jon & I are 100% on the same page and I am thankful for that. We made a commitment to the court in Ukraine to be Selah's & Sarah's parents, knowing their disabilities, knowing they would need life long care. I cried that day as we looked into the judge's eyes as we made our heartfelt commitment to love and care for them. It reminds me of the day I made a commitment to Jon in marriage, "for better for worse, for richer for poorer, in sickness & in health" When I made that commitment to Jon I had NO idea what I was really committing to...we look back now and laugh. With the girls, I had some idea, because we have other children and another handicapped child, so I knew how life would be...and we were content with that. Now life has changed dramatically BUT not our commitment!

Tomorrow we have a meeting with the doctors/social workers etc to to plan out the next steps for her. We believe she will be here for 4-6 more weeks and then we plan on taking her home. She will have a trach and a feeding tube put in. We are still praying for God's healing & mercy but we must be practical too. We have alot to learn in order to take care of her.

Please pray for her, for God to heal and for Jon & me to be able to hear what is said to tomorrow and be able to understand what needs to be done....

I want to tell you all who are reading this I do appreciate your prayers. They are holding our family up to the Throne of God. It means so very much to me. And I want to testify to you that God is a faithful God. I can say that sitting beside my comatose daughter in the PICU, with a broken heart. He is still faithful.

The thoughts that have gone through our heads today have been thoughts of eternity. Life is short and eternity is long< has been something that has gotten me through some dark days before & is a comfort to my heart. And what I mean is, in this world we will have trouble, hard times, accidents, death, heartache BUT there is coming a day when every tear will be wiped from our eyes...I am looking forward to that day! I have a hope beyond this life. It is real to me and even more so since I had Sam, knowing one day he would be whole. And now......it is more real to me than this room I sit in. So we walk on with hope in our hearts for the future here and our eternal future...please continue to pray....

Monday, August 20, 2012

Hard News....

Had a hard talk with our compassionate doctor....don't really want to go into details but our lives are forever changed without a huge miracle. I appreicaite the prayers and I trust God regardless of the outcome...but things are bad neurologically. Physically she is doing good overall, no big concerns, However the discussion I had tonight was one that Jon & I have had for the past few days and
it is hard. Basically Selah will live and breath on her own with a trach (since she doesn't cough or gag) feeding tube but all the movements we see are really basic brain stem activity. They are great but since they are not combined with some of the other things... it doesn't give us much.... We will be making many decisions in the next few days/weeks as we set our aftercare up. I appreciate your care and wanting to encourage me with various stories but every case is different and it doesn't really encourage me at all. Our doctor is a man of faith who led prayer for us yesterday and prayed from his heart for us today. He is just honest I know he would love to be wrong and hopes there is a miracle but miracles dont' always happen the way we want them to. He still says we'll know more as time goes by, and there is some hope for more change but as time goes by and she does so well in some ways, it makes the neuro stuff that much harder. I trust in God although my heart is breaking... If you feel the need to give me any advice please resisit it.....Just pray that God will still do a miracle for our sweet girl.

Trusting....God prepared!

God has prepared me for months for this...in gentle ways He has spoke to my spirit. Years ago he gave me the verse Joshua 1:9 "Be strong and very courageous for the Lord thy God is with you wherever you go" I am SOOOO NOT a mystic type christian but that has been popping up everywhere and I felt God was telling me to get ready for something. Early in the summer I met a lady in the mall and sh
e was Not weird but she told me God was about to do something BIG in our family. But that I'd have to really trust him. I took her serious and felt it was from the Lord, although it was right after the adoption and I did say He had done something BIG!!!!!! She told me there was more to come and that it would be seen by many...I had forgotten that until right now. One of my friends was with me and I think she'll remember that I took the lady serious and didn't joke around or be sarcastic about it. ( I tend to do that as most stuff people say is a bit crazy but I felt it was from God) Some people had some disturbing dreams about my family, especially of Sam... and I felt a God given sense of premonition all summer. God prepared me for the loss of my twins that way ( I'm not saying that Selah is not going to make it) God knew this was going to happen...I don't understand it all but like the old poem "The Weaver" I will one day!

I want to write more about this but I have to go to bed as tomorrow will be a long day. Thanks for your prayers and just know that God is with you through everything!!!!!

Sam's Homecoming! Prayers for Sarah




Thanking God that Sam was released on Saturday!!! He is back with hsi brothers and sister being cared for by his uncle!

Tomorrow (Monday) Sarah will have her MRI to see if she is a candidate for the corneal implant. If so she may have surgery on Tuesday....that is just a little stressful.....

Sunday update

Today was a very hard day. Selah had no responses till evening & that was hard for us! However as they were changing an IV she had tears and was moving her head. We were told that tears come from the lower part of the brain stem and was not really a big sign. We don't know, it seems she is here at times. Still NO gag or cough PLEASE pray for that! PLEASE!!!!!!!!!!! Tomorrow is a new week, she will finish the study at 5 pm and be taken off the cooling sheets. She will start physical therapy...She was started on feeds through a nasal feeding tube ( just like a NICU baby has) and is tolerating that. Her heart rate was down some around 130-140 , it still needs ot get down to 100! Please pray for our girl to come back to us! We have both cried on and off all day.

Went to church this morning and I just wept through most of the service. The words of the song becomes so much richer when you are going through a trial..."the Defender of the weak, You comfort those in need..." How Great Thou Art" etc....

we went out to eat after service and the server asked how many and Jon and I both said 7, then we said 6...then we cried when we were seated. It was hard to ride in the care with all the children and have that one carseat empty. Oh God somethings are like knives in the heart!!!!! Then as we were getting ready to leave the server comes over with a gift card from a family who had just left. We just bawled again and so did our server....

I can relate to David in the bible when he said "his eyes were swollen from crying" Please pray that God will see those tears and answer our prayers!!!!!!!!

Sunday, August 19, 2012

Saturday

Selah continues to make some movements...however we have been told they are not the kind of movements we should be seeing...it's long and detailed and confusing to explain....however we feel she is reaching out to us. PRAY specifically that her heart rate will come down (still around 150ish for the most part) pray that her blood pressure will NOT go up! She is still in danger of more brain dama
ge from that. Pray that she will have a gag reflex and that she will respond to pain correctly. She has started responding a little but in a way that leads them to believe she is only responding from her brain stem. She is swollen and has been given drugs to combat that. Today they had to remove a arterial line because there was a blood clot. This has been a long day of many ups & downs... pray for Jon & me....

Please attend church tomorrow and ask for prayer for Selah!!!!!


Sam went home to the RMH and I'll have the pictures up soon:) So thankful!!!!!

Saturday, August 18, 2012

Update and Request

Update
Selah was stable through the night. We need to see some improvement and SOON! The more time that goes by, the less chance of a full recovery. We are depending on the mercy of God. The staff here is amazing. I've never seen anything like the level of concern, care and professionalism. They are as postitive as they can be, but I see in their eyes/faces and by what they don't say, that they do
not give us much hope for a full recovery. They have seen too many children/people in this situation that do not recover. I am a realist, I've seen so much heartache in life, and beiing in the ministry, I know God doesn't always answer prayers the way we may want, we live in a fallen world. But I still trust the One who has been my guide through life. I don't feel that I (as a mere mortal) can comand or demand that God do what MY will is. But I throw myself on His mercies...and I can rest in that. This morning I woke with a heavy heart and a sick stomach. I ask you to pray for the mercy of God in this situation. Pray that He will, in His grace, work a miracle. Thank you

Request
Can I ask you a favor? so many have asked "what can I do to help?" THIS is what I want. I want each of you to go to church Sunday morning and ask your church to pray for Selah. I know some of you have gotten out of the habit of church attandance and some even feel it is not necessary to go anymore, that you can worship where ever you are....but there is something special about a corprate worship service and so many praying at once. So if you want to do something for us, please do that! and ASK specificaly for your church to pray for our little girl for improvement. thank you!!!!!!!!!!!!!!


Grace Church, the church my husband pastors is having a prayer service tonight (Saturday) at 7 pm for Selah. If you live in our area, please feel free to attend!!!!! http://www.gracechurchofzephyrhills.org/ is our website and there are directions there on it.

Thank you all again from the bottome of our hearts!!

Friday, August 17, 2012

I love this song....it ministers to me I just had to listen to it tonight.....

Update

Selah has had a good day. Everything has remained stable. Her heart rate is still higher than they'd like so please pray that it will go into normal range. She has made some small advances neurologically but we have a long way to go. We have been given hope for her survival based on the fact her body has remained healthy and her organs are functionally good. Of course they can not predict where she will be neurologically. She is making small advances, she is breathing above the rate of the respirator and her eyes are responding a tiny bit.

So please pray for Selah that she will remain stable and that she will respond to stimulus. We are NOT out of the woods yet but God is listening to our prayers and showing mercy. Thank you all for holding her up before the throne of grace....God is our refuge and strength a VERY present help in trouble! He is the only God who promises to be our help in trouble and He is with us in trouble....I know He is carrying us today!

Thank you all for everything! We feel cared for and loved by so many people who are holding us up to the Father....thank you!!!!

Thursday, August 16, 2012

Update


Selah's heart rate continues to be high and her blood pressure won't stay in the normal range, it goes a bit too high at times. Please pray that this will stabilize quickly! Pray that she will begin to respond on a consistent basis to the neurological tests. We are crying out to God from the depth of our beings for our precious little girl. She has been such a blessing and joy to our lives these past few months, she fit into our family like she had always been with us. We didn't have one major issue with her adjustment and we love our little LaLa. Please ask God to be merciful to our family and to heal our child. Although she has only been with us a few months, she is our child and I can't imagine life without her!

I want to thank Rochester NY for the outpouring of love. We have always loved this city and Strong's hospital since we started coming here five years ago for Sam's corneal implant and follow up visits. We were impressed with the friendliness of the city and everyone we dealt with. We have such a hig regard for Strong's hospital and for all it (and Dr Aquevella ) has done for our son in giving him sight. Now we are being cared for by the awesome staff here and just are amazed at the level of care and concern our children are getting!!! Thank you Strongs!!! And thank you Rochester for opening your hearts to our family!!!!

I have to thank the Ronald McDonald House here in Rochester that has always been a blessing to our family. They happily accommodated our two new girls this year and gave us a wonderful room. Now they have been there even in a greater way for us. We have a room in the hospital itself where we can take a shower and sleep for awhile. I can NOT say enough about the wonderful sweet spirit of the RMH, we've always felt we were so blessed by their kindness and even more so now!!

Thank you all for your prayers, we go through many emotions throughout the day. This is so hard. When we are in Sam's room and he is playing happily, our heasrts are so glad and so thankful, then we go to Selah and our hearts just long to see her back to normal! I have gone through some heartaches in life, but this morning I felt like my heart was actually breaking ...we love our sweet girl so much, it's so hard to see her like this.....

Sam is doing wonderful and is back to normal with no side affects from this. Our heart rejoices for that and we thank God but we need another miracle!!!!

Today we got to meet the main people who rescued the children, what a blessing that was to sit down with them and thank them!

I want to address some things, I guess many folks wonder why two eight year olds would be in a stroller. Both of them are very small for their age as a result of their different special needs/handicaps. Sam has Peter's Anomaly and short stature is one of the characterises of PA. Selah is very small and we do not know yet if that is because of a certain syndrome or was it malnourishment? We do not know but think it must be part of Selah's diagnosis. We have an appointment for Oct for some testing for her. Tehy both walk, but slowly and don't enjoy walking long distances. So they were enjoying a wonderful walk with their daddy when this happened.

Also my husband glanced at his phone to check the time as we were taking another family to the airport from RMH to catch thier flight home and he didn't want to be late getting back to the RMH. He was not texting as some have suggested. He really doesn't text, just really learned how a couple of weeks ago and hasn't texted since. He just simply looked at the times and in that split second, the heavy stroller began to roll. It was an accident and my husband is devastated...please pray for him as he deals with this.

We are an overly cautious family. We have kept the children in car seats although they are past the age in our state, we never have live din a house with a pool and refused to even look at them when we were in the market, we even empty the baby pool as soon as we are done with it so it doesn't sit on our patio we don't let our kids ride with teenagers, We wear seat belts and check our fire alarms and keep a fire exighuisher right by our bedroom door at night...we do everything we possibly can to keep our family safe. What I am saying if something can happen to us, it can happen to anyone...so be as careful as you can with your children!!!

And cherish the moment, every moment with your family!!! I am so sorry we didn't spend much time with Selah on her birthday. but we were at the hospital from 5:30 am to 4 pm and just had to go to bed early along with the kids who were so tired!!! We had planned on doing something special on Wednesday night but didn't get the chance.. So cherish each moment with your children. Take time for each one every day.... Love them, we are not promised tomorrow! There is NOTHING in this world more important to me than my children, and there are no other folks Id rather be with than them and my husband. Dont let any petty thing come between you and a loved one, Life is too fragile. I'm thankful that Selah knows we love her and I know she loved us and we had won her love and trust...

So again please pray for our Selah!!! So many people are praying...one friend wrote me that she knows God is hearing Selah's name continuously coming up to His throne....thank you so much for the prayers...

Urgent prayer request!!!!!!

"If you've not heard, we've had a terrible accident. Jon took Sam and Selah on a walk on the Erie Canal before lunch today. He stopped for a minute on a level surface, to check the time on his phone & the stroller rolled into the Erie Canal. Jon Clanton jumped into the canal right after them. He was able to hold the stroller up & fought against the current pulling him and the stroller down. ...He couldnt' get the kids' unhooked but was able to pull them up some and evidently got Sam's head up. Someone jumped in and took him out and Jon and another lady pulled up the stroller so they could do rescue breathing on Selah until the EMTs got there. The Erie Canal is very deep, cold, and strong currents...the sides are cement with nothing to hold to... Sam is ok, put is being kept overnight since his body temp went down to 90 degrees. At this point Selah is not expected to live...our hearts are broken. PLEASE PLEASE PRAY FOR SELAH!!! We love her so much and have loved being her parents. We are asking God for mercy! She is on life support, currently she is in a study ( the only hope they could give us) The study is to keep her temp at a certain lower than normal point with the hope that could help. But they still give us no real hope and even if she should live, they feel she won't be "Selah" anymore. Please pray that God will give us a miracle for our little girl!!!!!!!"

Tuesday, August 14, 2012

Update on surgery









Picutres ...
Our THREE 8 year olds...Happy Bday Selah
Sam waiting for his exam
Sarah waiting for her exam...
Sarah with 'her daddy




Quick update....
We arrived in Rochester NY on Sunday after a long but safe trip!

Sam and Sarah both had EUAs (exams under anesthesia) today.

Sam's was perfect, everything is just right, five years and one day since the implant!

Sarah's was a bit more complicated. First they couldn't do the implant today because her cornea is smaller than normal and she has to have a custom made implant to fit her eye. Also the sclera (the white of the eye) has some issues. There is concern that it may not be able to support the implant and her eye would be like a deflated tire. Also there was some strange things seen on the ultrasound of her eye near the pupil. Soooooo she will be scheduled for a MRI Wed or Thurs and based on that, they will know how to proceed.

We feel they will attempt the implant next Tuesday despite all of this. The good thing is her eye pressure is normal, the retina and optic nerve are there and in the right places and we KNOW she sees because she reaches for light up toys, up to a foot in front of her. We don't know how good the optic nerve or the retina is because they were looking at it through the cloudy cornea and on the ultrasound.

We love our Dr Aquevella and totally trust him in this decision. Please pray for him to know just what to do to help Sarah, that's his heart desire to give children sight! Pray for Sarah!

I have to admit I'm a bit shocked by this. We've felt that she saw more than Sam did before his implant and thought this would be straightforward but we trust that they are gathering all the info necessary to be prepared for the surgery.

Today was Selah's 8th Bday and we didn't spend much of the day with her but plan on doing something special for her tomorrow. She did get a dolly from us and a lion and a dolly from the Ronald McDonald House. So we now have THREE 8 year olds and think that is pretty neat:)





Thursday, August 9, 2012

Sarah




Next Tuesday Sarah will be getting her corneal implant, the Boston K-Pro! It will give her sight! Now she sees light & shadows but then she she will see much clearer imagines. We don't know exactly how well she will see but based on Sam's success it should be a lot!

So today as we are getting ready to leave, my heart is filled. The first time I saw Sarah's picture I though "oh my God she looks like Sam!" and my second thought was "she needs the corneal implant surgery!" Now 9 months later, it is happening...God is good! I didn't know that first time I looked at her picture that she would become my daughter!!! But God did!!!!

So that leads me to another thought...does God just love Sarah (and Selah) more than He loves those other 150 children living in an adult mental institution in Ukraine? Does He love them (and Shad also) more than the 100 million orphans in the world that He would rescue them and give them a family??? I don't think so....

So WHY were they rescued??????


They were rescued because we swallowed our fears, swallowed our doubts, didn't listen to ALL the many reason why we should NOT go and get them. Oh we had some fears and some doubts and God KNOWS there were many reasons why we of all people should NOT go and get them ...but we went. We obeyed that small voice knowing that one day we will stand before God and give an account of our lives. Will fear, doubt & reasons why not matter on that day???? I don't think so.....

We are NOT saints, we're not trying to work our way into heaven... we don't have a great amount of patience or virtue...we're just ordinary folks living in this world who want to do all we can....

You can do the same thing we did...even if you are single there are countries that allow singles to adopt...Are you poor? LOLOLOL...we are poor in comparison to most of America, but RICH in comparison to most of the world! God provided. No we didn't have $32,000 in savings...our bank only requires $5....LOLOL The God of this Universe stepped in and made this adoption happen. He will do the same for others too...of that I have NO doubt! Are your hands full? Mine were...and are even more so but it is worth it....

I can promise you that if you trust God and step out in faith He will meet you and meet every need. If you adopt an international child you are rescuing a life that has very little hope. We are so blessed here in the USA, you have no idea. We have foster care and while that might not be a perfect system, I can assure you it is a much much better system than anything I have seen or heard of in other countries....

If you are interested in international adoption, write me, I'll be glad to help you ...

So pray for my sweet sweet Sarah! Pray that the surgery is a complete success, I have to admit I am nervous, nervous about her being put under and nervous that something will go wrong...Sam will be put under first for an exam to check his Kpro and then she will go in for the operation, all on the same day. Pray for the hospital because I am a crazy MAMA! Pray for a safe trip for all of us. Our oldest son is having some major issues and may end up with appendicitis as he has pre condition for it. He is ok to travel, but we are having to watch him closely. This is our first road trip with 5 kids, so it should be fun LOL espicially with all the medical drama thrown in!

Thank you all for your prayers for our family in the past and now as we go on this next step!