Quick update

Today has been a good day physically for Selah. Her blood pressure is staying nearer to normal range. She seems to be reacting good to the new meds. Since she is responding to this medicine, it seems to point out that this problem has been caused by her brain injury. So there was not a physical problem that caused this but more her brain responding to the injury:(

So we continue to ask you all to keep her in your prayers. Selah needs a touch from God to heal her brain.

Thank you all for your prayers.

Nightly update pray for her neurological condition

Well Mommy had a rough day but physically Selah had a better day. It seems she is responding better to the new BP meds and her BP is near normal range. It does change throughout the day when it wears off. She still is breathing on her own and keeping her oxygen levels up to 100%! She is at her goal on her g-tube feeds and has had no problem with it. Her heart rate has come down to a near normal range the last few days. So we just need prayer that she will remain stable and that her BP can continue to be controlled. She finally had the EEG and they do not feel she had any seizure activity.

The biggest prayer we need is that God will touch and heal her neurologically ! Today a doctor basically told me "this is where she will be". Of course this is the same doctor who told me she would not live through the day of her accident so I can put it into perspective...

So if you wonder where she is....she is in a vegetative coma. She can breathe on her own but that is it. Her limbs have already stiffened, they feel like wood and she rarely moves except for movements that affect her whole body. They are not "good" movements, they are the kind of movements that show she has massive brain damage. She can not swallow. She has rare periods when it seems she responds to us but they are few and far between. she is not constant with responses like she needs to be. The neurologist who read her EEG today but it rather bluntly....he compared her EEG to a "normal" 8 yr old and said if it were normal, she'd be like a car running on all 6 cylinders. Taking into account her delays, he compared what he thought her EEG would look like , maybe a car running on 2 or 3 cylinders...where she is now...it's like she is running on a half of a cylinder....Her EEG shows massive damage, very slow responses...Hard news to hear for me and for me to write to you...but you need to understand where she is at.

So now you know where she is at and how to pray! We need to see more response and we need to see her limbs relax. It is so very hard to see her like this. You have no idea. Just looking at pictures of her, tear at my heart.

We feel the doctors do everything that can be done that is safe for her. She is on several meds, some to relax her body/limbs, she has Pt and OT, she has splints on her hands so that won't curl up. She wears boots on her feet so the toes won't point out. We play music and interact with her. There is nothing else to be done....She needs a touch from God!

There is no hope for her except in God. We have no one to turn to but Him. I'm so thankful He is our refuge and our strength, a very present help in time of trouble! All I can say is that scripture is true. I promise you it's true!!! Thank God it's true! This God that I serve does fulfill His promises! So if you wonder if God is real, let me tell you He is. He is the only ONE keeping me sane:)

Thank you for praying for Selah! Please keep her in your prayers! We so appreciate your prayers!

BTW it is COLD here in Rochester NY! Tomorrow it will be in the 40's, we think it's kinda neat for it to be so cold in September, the kids are amazed:) Tonight I'm wrapped up in a nice blanket that a friend sent the girls, I'm borrowing it!

Shad

this is the picture of Shad meeting Selah.

http://myreallifebyyvonne.blogspot.com/2009_03_01_archive.html

I was asked about Shad's adoption story and you can go to the post above for it. Or scroll down to the very first month I blogged for his sweet story

Morning update for Selah:

They are going up on her BP meds, they feel that it is just her brain responding to the injury and she may always have high blood pressure and need meds. Everything else is stable.

The morning has been rough for me. Hearing all the problems/issues that we face...feeling really really low right now. I can not express to you how hard it is to see our daughter like this. I'm used to kids being on wires/IVs etc...I mean Sam came home with a bunch of machines but I think the difference was knowing they would one day be gone. Knowing this is where she is without a miracle is very very hard.

So again I ask, PRAY for Selah!!!!

My Thoughts....

Since I was a child, I would think deeply about God and the things of God. Obviously God was calling me as a child to devote my life to Him. All I wanted to be was a pastor's wife:) Well I got that wish LOLOL! Then found out I was crazy for wishing it! But when others were thinking about various other things, I'd want to debate scripture. I look back now and laugh at myself but that was what was interesting to me. I always wanted to "rightly divide the word of truth" Even as a kid, I wanted to know answers WHY about many things in scripture.

Healing was never a big deal to me. Although I was raised in a pentecostal church, it just didn't come up in my life much. I was young, healthy...then we lost the twins and while healing was a secondary issue with them, my biggest was the whole question of suffering and WHY did we have to go through their loss! As I've said before I worked through that over years...then came Sam!

The whole issue of healing came and slapped me in the face! Now I grew up being taught all about healing and how it is for today. But I never really saw any true healings. That was my experience. Now we had a sick little blind, mentally delayed son....what did we do about it? Well we prayed, we had others pray, we even took him to a few meetings where ministers prayed for healing...Along the way, I came to believe that Sam was "fearfully and wonderfully made' God made Sam just like he was...a very very precious and special boy. He has Peter's Anomaly and a rare deletion in chromosome 4...he is probably one of the most rarest gems God ever made.....Was that a cop out? Not to me, I felt a total peace and acceptance of the situation. We were thrilled with him and there were times when he was sick or had an issue with his eyes after surgery that we prayed for God to touch that part of him. Honestly I can't imagine him any different than he is right now and just absolutely adore him!

I know we have friends/acquantices in the "faith" community who look down on us for having a handicapped child. Although NONE have ever had the nerve to say anything to our face (probably a bit scared of me LOL) but I feel we have been given a treasure that is so rare others just don't understand it. I've seen looks of others within our particular Christian circle, that I'd like to slap off their faces but I just roll my eyes and think of all they are missing with such a limited view of the graciousness of God. I'm sure some think we just don't have enough faith to see our son healed. Or maybe there is something wrong in our lives and that is why he was born with these issues.... There aren't many people who think like that, and certainly no one we would choose to be around, but they are there...on the fringe...

BTW, we think that children with handicaps are so special and close to the heart of God that we chose to go and adopt some more and bring them into our family! We were drawn to Shad, Sarah and Selah BECAUSE of their handicaps NOT because we necessarily wanted more kids! But they were the kids we needed to make up our family!

So now we are facing this....Selah went from being a special needs child to a child who is greatly handicapped...one who doesn't even seem to know we are there with her....How do we deal with this and the question of healing??????


If God spoke to my heart and I knew it was Him saying Selah would be healed, I'd proclaim it. God has given me faith for crazy things before like going to SEC and both Shad and the girls adoption as well as the rebuilding of our church ( more than $150,000 of work and we are debt free)

God hasn't spoken to either of us like that for Selah. We do not believe that God is a genie in a bottle and will just do whatever we say IF we say it enough or if we do certain things... We trust God through the difficulties.

God gave me a clear word in the mall that day, do not be afraid. He didn't promise that we'd have some great miracle...He didn't say He'd deliver us out of the situation, He just said "not to be afraid" that is what I'm clinging to...that no matter the outcome, He will be with us and we won't be afraid. I think that tends to be more real life than claiming a miracle.

I just keep praying that God will show mercy and I do remind Him of some things I've prayed for over the years, especially the last few months. So many times since we got the girls, I'd just thank God all throughout the day and before I'd go to sleep. I'd tell Him how happy I was and that ALL I asked for our family was to stay healthy and all be together for a long time. I can't tell you how many times I've prayed that specific prayer over the past few months. I'd never really prayed like that before... I told God that I didn't care about money, or whether our church was "successful" or where we lived or anything except to keep us all together, healthy and a long life....

I remind God of that prayer throughout my day...that prayer seemed to come from within my very being. It was not a prayer of fear or worry, just thankfulness and contentment....I was totally content with my life. We live in a tiny house, barely big enough to qualify for more children on our homestudy. My husband pastors a sweet church but a small one that doesn't seem to grow much no matter what we do, he works full time as a chaplain and hasn't had a raise in 6 or 7 yrs (thanks to all the budget problems) we live on a tight budget BUT we were sooooo happy and content. We didn't worry about the future, we didn't worry about finances, we didn't worry about much at all...we were just happy and content in our life. We wouldn't ever be on the cover of Charisma magazine or even our denominations' magazine for the most successful growing church, not alot of people knew our names, but we were faithfully doing the work of the kingdom. Jon was happy as a chaplain, he loves his inmates:) our kids were all settled and doing great...there was nothing, NOTHING that I desired EXCEPT for us to stay healthy and be together....I was content, I had found the secret of being content. Many times in my life I was not content....I was always looking ahead, wanting more, not necessarily material things, that has never been a big thing for me. But always wanting to "get ahead", be a success ,even in minsitry.... But here , out in the swamp (not really IN the swamp but mighty near) with five kids, in a tiny house, I found that elusive thing, contentment.

So now what do I have? Tonight is four weeks we have lived in the Ronald McDonald House, three and a half weeks since the accident with no real end in sight. My husband and I take turns taking care of Selah and the other kids here....Our kids are so flexible, I can't tell that any of them are stressed at all and I thank God that they are the kind of kids who just "go with the flow" But it's different living like this and dealing with all of this. Talk about living in a fishbowl! Tonight I went for a walk (yeah my foot is better-long story but I had THREE foot surgeries this summer and still have some issues that will have to be addressed when we get home sometime) but I just had to have a quiet place to cry out to God alone. I actually walked down by the Canal, past the area I think the accident happened but even at dusk on a cold (to me) night there were people around. So it's not the easiest place to be in to be dealing with all of this but it's ok. It's not home, our quiet little piece of the world.

I know that God is a God who listens. I do trust Him with my life, with my children's lives. He has been with me all the way through life, leading me, guiding me in so many many ways. I can look back and see the Hand of God through some deep valleys and through mountaintops too. So I don't have the testimony of HUGE miracles "the blind see, the deaf hear, the lame are walking" but I have the testimony that God is with me even through "the valley of the shadow of death" He has been there in the good times and the bad times. He has brought me out of things, He has provided for our needs. When we adopted Shad, there were complicates in my travel home and I believe God sent a real angel to help me and Shad...I shared it back awhile ago in a blog. I believe He meant for us to adopt these precious girls and provided all we needed for it. I believe He sent someone to give me a word (I'm almost thinking she was a angel also- but maybe not, maybe just someone who had the courage to come up to a complete stranger and share "Your family will be going through something big in a a few months and God wants you to know "do not be afraid!" Many will see...."


So I don't know what is going to happen. Maybe God will raise Selah up and heal her completely. Maybe we will have to walk this harder road with her. I don't know....I know what I want! I want Selah back 100% to her funny little self! Selah was delayed, maybe about a 12-18 month level. Some of the delay may have been because of being instiutionzed for years but she truly had real delays and would have never been "normal" but that was FINE with us! She was the funniest little girl and so cute! I know I write about her in the past tense but she is not that little girl anymore, she is so far away from us. That is the hardest thing for me to deal with.

So yes I cry out to God for healing but I trust Him regardless of what happens. God doesn't heal everyone, I don't have all the answers all I can say is I trust Him. Right now I have no real answers...but I trust Him. I try to look to eternity...even when everything within me is screaming for what I had, I try to look to THAT day when all tears are wiped away...

Is that just denial? Am I just trying to escape reality? I don't think so. I realize in this fallen world, things are going to be hard. No one promised us a rose garden. I read a blog of a friend today and she mentioned how ALL of the disciples of Jesus died horrible deaths. And the one who wasn't killed was exiled to an island for years and years, not an easy life! So if Jesus died on a cross and all his disciples had hard times, who are we to think we are going to sail through life and just live a hunky-dory life? That is not how it works! I think that is the problem with the church world today. We have ministers promising us things that God never promised us! Yes God will give you a wonderful enriching life but it may not be the life you planned it to be! I'm sure all the disciples knew God in a deep way and treasured the life that God gave them but it wasn't an easy life. If you take the Bible IN CONTEXT which means, learn to understand the bible as it was written and what the bible really means. for example , you can't just pick up the bible and open it randomly and pick a scripture out and say this is what God is saying to me. Ever heard the old joke about the man who did that and the first verse he picked was "Judas hung himself" well he didn't like that so he tried it again and the next verse he picked was "And go and do likewise"...that's funny but I know folks like that. Or my most annoying thing is when folks say "well God won't give you more than you can bear" and think that is a scripture...it is NOT!!!!! In that passage of scripture in I Corinthians 10:13 Paul is talking about TEMPTATION! And it really says is that temptation is common to all men and that " God will not allow us to be tempted above that which we can bear but with every temptation He will provide a way of escape." So PLEASE never say that to me to try and "comfort" me....it drives me CRAZY!!!!!!!!! Sorry my soapbox........

So we are trusting and that is not easy right now. Sometimes it is an hourly struggle for me. One hour I can reaffirming my faith, the next I am crying out to God saying "God do you remember me?" I'm not a saint at all. I shrink from learning about Selah's tubes and the care of them. Jon has started learning, and I just can not right now. I do NOT want to learn to do them, everything in me wants my Selah back. But I know I will have to learn how to take care of her. It's not that I don't want to take care of her but I hate the tubes, hate that she has to have all of this. Hate that even with all of this she is having health issues....I'm mad! And I'm not sure of who or what I'm angry with I'm just mad that this little girl who has gone through HELL has to deal with this now. Sometimes I'm glad she seems unaware of things...I hope she doesn't know much of what is going on with her physically right now. I'm drawn to her I want to touch her and hold her and try to as much as I can despite the tubes, so don't think I've turned away from her. It's not that, I just hate what the tubes represent.

This is so hard, if I thought there was a magic formula that would bring her back to us, I'd probably do it. But there is not, there is no where in scripture that gives us a magical formula. In fact one of my dear friends did a huge study on FAITH and in more than 50% of all healings that Jesus did, it was the faith of others NOT the patient that was mentioned . I find that interesting....so I ask you all to pray. Pray for Selah, pray that God will look upon her in mercy and heal her.

All I know is I'm going to trust God and "not foolishly charge God" with things. I think I'm gong to start studying the book of Job. There are many truths in there to learn. Job trusted God and despite what was going on, he didn't foolishly charge God with anything. But he did question God at times.

Our story has become public, and although I will always be honest in my writings, I do want to point anyone who hears or reads our story to Jesus. We're not perfect people. We are in pain and dealing with the hardest thing we have ever dealt with but we can still say God is good. Our circumstances do not change who God is...and His peace has surrounded us throughout this horrible time like a a blanket. My hope for everyone who reads this is that they will experience the peace of God in their hard times like we have.

My husband likes to sing a old song that goes "This peace that I have , the world didn't give it and the world can not take it away" That is so true. Although our hearts are breaking, we still have peace. That is something I can not explain but it is so true!

Please pray for Selah. Her blood pressures remain high and pray that she returns to us!

Sunday update

Nothing has changed, her blood pressures stay high most of the time. They do seem to respond to the meds in the first hour following her medication but then they climb right back up. Please pray for her!

Today I keep reminding myself of that word I got from the Lord, in the mall...Don't be afraid....that is what I'm holding on to right now. Feeling very fearful on many different fronts....but thankful that The God of the Universe took the time to tell me "do not be afraid" three months before this happened. I've never had a prophetic word in my life. Being raised Pentecostal and becoming quite skeptical of alot of foolishness at a early age, did NOT make me a good audience LOL. I've been in services where everyone around me "got a word" but for me. I always thought it was quite funny! But God....gives me a soft gentle word in the middle of the Mall, that speaks to my heart in the worst times. I'm holding onto that word right now.

I know I ask for prayer for Selah all the time...and I just have to tell you that is the one thing that you can do for us. Pray that her BP will come down and that she will respond to us. She seems so far away from us right now. Her body is stiff, responding to neurological signals of injury. It's so sad to see her like this. She is breathing on her own and accepting her feeds through the g-tube with no issues and we are glad of that but .....please pray!!!!!

Still need prayers!!

Selah's blood pressure is still high, last reading 161/110! She responds to the meds given for about an hour then her pressures go back up. She had two "seizure like " movements today. She will have an EEG tomorrow to see if anything registers...she'd had it on continuously for about a week with no sign of seizure activity.

She has had many tests to try and determine why her blood pressures are this high. They've ruled out most regular reasons. It could be that her brain is "changing" and it needs more blood. That is not really a "good" thing.

Her heart rate has become a bit more stable, it seems to mostly stay in the 120-130 range which is still on the high side but not as high.

So again our girl is in a dangerous situation. Please pray for her. We are so disheartened that she is having these problems. She hasn't really responded to us in the last couple of days.


She is breathing great on her own and she is doing well with feeds. Her g-tube seems to be working good. We are thankful that she is doing good in these area.


I just ask and ask for you to pray for her...ask your church to pray, ask your friends to pray...Please dont' forget about her. We haven't given up hope for recovery, but some days are way harder than others, this is one of those days.

Prayer Needed! High Blood Pressure

Last night Selah's blood pressures were up and down. This morning she may have had a seizure. It was small and they aren't sure but neuro is coming to check her out. Please pray that her blood pressure will normalize! This is NOT a good thing! It seemed the meds she was given last night worked for about an hour but then wore off. She is little and can't get just tons of medicine plus it can affect her body in other ways, everything has to be weighed out. Please pray for Selah!!!!!!! this is desperate once again!!!