Dental surgery and Request concerning Selah

Selah's oral surgery went great. She had 6 teeth filled and 6 or 8 teeth pulled, most were baby teeth. We just want to thank Strong's Hospital and the Dentistry Department for working out all the details for us.   It was quite a job to get everything figured out and we really appreciate everything that went into getting it done for Selah.  She was originally scheduled to have this done in Florida this month but when the accident happened, that was cancelled.  It would have been overwhelming to schedule this after we go home with all that we will be dealing with.  Plus with all the problems she had with her teeth/gums she could have gotten an abscess or infection that could have affected her health.  Thank you Strong's Hospital for making things easier for us!

Once again Selah's blood pressure meds have been increased, she has a stronger patch and the BP is almost normal!  Finally!!!!!  Hope this will maintain, the last 24 hours have been the best readings she has had since the accident. 

We still don't know for sure when we will be going home, I don't think the details have all been worked out but we still think it will be next week. 

Please keep praying for Selah!  Tonight driving back and to when I was alone, I just plead with God for her.  I reminded Him how very thankful and grateful I had been for my life & how I asked NOTHING but that  He keep us healthy and all together.  I reminded Him that I didn't ask for anything else.   What came back to my mind was the word that was given to me by the German "tourist" (angel???)    at the Brandon mall...."Something BIG is coming for your family, Something is ahead of you soon and God doesn't want you to be afraid, many will see...."  I know that was a word from the Lord to me.  and that just floors me and actually makes me tremble that the God of the Universe would take the time to send me a message and it gives me courage to go on.   I wasn't promised a miracle but I was given assurance that I didn't have to be afraid.    Can you believe that God took the time to send me that message?  That blows my mind.  I am soooooo glad I wrote about it on FB and was able to go back and read what I had written so I know I didn't imagine it or was remembering it wrong!   I did laugh a little about it at the time  and thought it meant we'd adopt the other three children that we grew attached to while at the Ukraine institution our girls were at....everyone told me to go buy a lottery ticket (the lottery was really big around then)  we kinda laughed about it but I knew in my heart that the lady was not a looney toon... I sensed something when she spoke, I so wish I'd paid more attention to what she said, I have such a bad memory for details.   But maybe that was just what I was supposed to remember....God knew what was ahead, I don't have to be afraid and many will see....  I have to constantly remind myself NOT to be afraid....  In my flesh, I'm afraid of the future, scared witless, to be honest!  But my spirit is not afraid...I'm not claiming that God is going to heal her, I do not know but I KNOW He will be with us. 

The joy of serving God and walking through tough times or times when I've had to really hang on to God's hand, is that when a new trial comes, you know that God has been with you before and He will do it again!  This year 2012 has been an amazing year for our family.  We have seen and experienced God's hand like no other time in our life.  We have learned to trust deeper and more confidently.  We have seen some WILD answers to prayers and have even been blessed above what we have even asked for or thought about., during our adoption.  We had miracles in Ukraine as far as paperwork/court process/facilitator/lodgings/favor....  We had the miracle of two little girls who were older, delayed and instiutionzed come into our family with NO issues whatsoever!    We had crazy miracles of provision...    Then the accident.....and even then there were miracles with the medical students and doctors who were at a picnic nearby who ran to help and had the training that was needed.  It seemed God had everyone right in place to help Jon rescue the children.  Sam survived with no issues, his eyes didn't even get any infection from the water.  Selah survived despite what every doctor said to us in the beginning..so we have been blessed in many many ways.   Just typing this, has encouraged my heart and spirit.  We serve a good God.  How can I but trust Him???   I will not  question God foolishly...I will not turn my back on Him.  Even if He doesn't do what I want Him to do, I still am going to say I serve a faithful, good God!   I can trust Him!

In that vein....I was going to save this for later but it seems to fit nicely now.......
(I may lose some of you now....but...)

When we get home, we have some requests....If you come to visit us/Selah, do not come because you think you are the one to "pray the prayer of faith"  don't come arrogantly demanding that God does this or that because I will stop you and ask you to leave.  Respect our theological viewpoint that we trust God, we don't tell the God of the Universe what to do.   We aren't "speaking Life" or claiming anything, we are not "name it/claim it" and never have been.  We believe we try to interrupt scripture within the context of the Bible and take the whole bible in context, not just little bits and pieces.  Don't come unless you are  going to be with us for the long haul.  This is going to be a long walk and we don't need any "fly by nights" coming in and doing their christian voodoo...If you're not going to be there for the long haul, with us don't bother coming.  I don't mean to sound mean or nasty but I'm at a point where I am very focused and I don't need to have to deal with anything or be fakey polite. 

Also we have had someone come and pray for Selah who prayed that she would be healed and totally "normal", with none of the delays she had before the accident.  That REALLY bothered both of us.  She was PERFECT to us before the accident!  We chose her and Sarah and felt like we were getting beautiful little hidden jewels!  She is still perfect to us but so far away and we miss her!  The point is Selah (Sam and Sarah) were made by God and we were not and are not ashamed of their delays/mental retardation.  They are beautiful to us and we love the way God allowed them to be born.  I can't imagine any of them being any different.  In the beginning with Sam we did ask for God to heal his mind but we quit praying like that and I believe we began accepting that Sam was fearfully and wonderfully made JUST the way he is!  His DNA is so unique that I just have to believe that God made him that way.  You may not believe like we do, but do not disrespect what we believe.  We live this life, not you!  God gave him to us and allowed us to adopt these perfect girls!  They might not be perfect to you and it may bother your theology that we accept them just the way they were born mentally.  I've yet to read/hear of anyone EVER in history who was born mentally retarded (and no the word mentally retarded does NOT bother me IF it is used in the right context)  and then healed later.  Can we just accept that God creates us all differently???

Now I can pray that God heals Selah from the affects of the accident and maybe that doesn't make sense to you but if you can accept the bible says in Psalms 139 that we are all fearfully and wonderfully made  then that does two things for me.  One it lets me know that the children are fearfully & wonderfully made.  Two, we want to see her come back to where she was, where God made her.

Maybe God allows children to be born different so it will teach us all to be more accepting of others and more loving.  As a society, we are only as good as how we treat our "weakest" members  I didn't understand that until I had Sam and then found what a precious Joy he brought to us.  His life keep us tender. 

You may not understand what I'm writing but we have dealt with some CRAZIES since Sam was born and I've a bit tired of craziness!  It's only gotten worse now and I'm done with it!  Someone just cornered my husband and told him it was up to him to get Selah healed....wow...that really puts the respondisibity on my husband huh?  Good thing #1 was that I was not there.....LOLOL  #2 that our trust is in God not Jon's or anyone else ability to "get Selah healed"  

Do people not realize some of their theology is NO different than voodoo???  Really...when you think you can manipulate God (or a god) then you have more power than God.  So if you think by reciting certain scriptures or singing certain songs, praying certain prayers a certain way or whatever will make God do what you want, then your faith is no different than someone who trusts in voodoo.  There is no formula to get God to do what you want.  Is it so hard for us humans to just sit back and let God hold the reins of our lives?  Can we not trust the Creator? 

I'm not saying God delights in tragedy or causes it  but we live in a fallen world, these are the effects of sin.  Death reigns in our mortal body.  I don't think  God caused the accident nor do I believe it was "Father filtered"  (dear God deliver me from silly christian slang that makes me want to throw up)  (Father filtered means that God only lets things happen in our lives that is filtered through him, basically meaning He puts his stamp of approval on it...weird way of thinking to me!)  I believe based on scripture that things happen in life, God knows what lies ahead and in His mercy may prepare us and He will certainly walk  with us through it.  I don't believe God micro manges our lives but I believe that He does bless us in ways we don't even understand.  There is a balance there and I am trying to stay right there, in balance.  ( maybe at some point I'll discuss Arminianism  vs Calvinism which are the two main thoughts of Protestant churches.....we  are Arminianist believing in the Free will of man  and that God knows in His Foreknowledge  but He chooses to limit Himself in His dealing with man by not making man into robots that are preprogrammed)  Most of the discussion between the two camps are more in regards to the issue of salvation but for me it goes much further than that.  I'm not sure I can explain this subject clearly at almost midnight....but I'm sure I will revisit it again!!!  The reason I feel I need to share this is a forewarning to be honest...disclaimer here...if you act crazy from this point on, you will be stopped! 

So if you are still my friend....let me know:)



This evening I drove down to Mt  Morris to pick up our friends' son to spend the night with the boys.  I dropped them off at Laser Tag for them to play a couple of games.  We have some sweaty happy boys:)  Driving to Mt Morris is the furthest south I've been in 6 weeks!  It's such a beautiful area, rolling hills, fields of corn...cute little Village...

Today the weather has been odd, warm and rainy then chilly.  Right now I'm freezing again!     This is me with my comfy Pj's(thanks Loretta!) on and my nice homemade slippers (thanks future DIL!!!) and nice blanky (thanks Kelly)  I'm sitting in the cornor of the  small tv room our family has kinda taken over at the RMH:) writing my blog!  (actually this pic was taken a few days ago but I'm wearing everything again and am in the same spot LOL)

Strong's Muesum and Update on Selah!

I took the kids to the Strong's Muesum today, as a late bday present for Shad. It's an interactive play place for kids. We had a blast:) Sam ENJOYED the train ride ( 5 times he went on it!!!) And he and Sarah LOVED the light up floor. I sat there for an hour with them while the boys played old video games. We all had a good time together Today Jon stayed with Selah. She did good, her BP is still a bit unstable and final plans haven't been made yet for transfer to Florida but we still think it will be Tuesday or Wednesday. Tomorrow they are doing her oral surgery thankGod. We had seen two dentists before the accident and she had been referred to a thrid for the surgery as she had so many teeth/gums issues. We are thrilled that she will finally get all of it taken care of here and ahve some time to recover. We appreciate Strong's Hospital for setting this up for her!! We feel it will protect her from prombems in the future. Knowing that we'll be leaving soon, I've been going through all the things we have collected in the past almsot 6 weeks! It is such a blessing to have all the cards from so many of you all. You really don't know how much everything has meant to us and you'll probably never get a thank you card although I have saved everything that had an address on it! but we do thank you for our hearts!!! I've tried 3x to post some pictures from today and it is just not happening! Blogspot has changed alot of things and it's not working! Even my post is looking odd when I hit "preview" Sorry I had some cute pictures of the kids. Will try later to psot them Please keep Selah in your prayers tomorrow around 1pm when she is having her dental surgery!!!! Thank you all!!

Future Plans

Today we had a planning meeting with the team caring for Selah. It looks like she will have her dental surgery on Friday. We are looking at a transfer date of next Tuesday or Wednesday. If everything comes together, we will transfer her to Lakeland Regional Hospital. She would probably be there for a few weeks while we get our home ready for her. Depending on our insurance, we may have to transfer her to s short term nuring place for awhile as our home gets ready for her.

In some ways this is good news but it's going to be hard. We are extremely happy with the level of medical care and professionalism that she has been given here at Strong's. Florida just doesn't compare to the New York in the area of medical care. We are blessed with a really good pediatrician at home and I'm so thankful for him! Lakeland Regional is a good hospital for non acute care for children. We've been really happy with it over the years with Sam. The problem lies more in specialists and other hospitals that we will have to deal with eventually, as well as services needed. Unfortunately I KNOW what lies ahead because I've been the mom of a SN child for almsot 9 yrs. I've had to fight like crazy to get any help for Sam! When he was born, the doctor would not believe me that something was wrong with his eyes.....and honestly it only went downhill from there! I had to fight to get his medical issues dealt with and fight for specialists. I am so not looking forward to what lies ahead. When Sam came home from the hospital on three machines, our pediatrician tried so hard to get me a few hours of nursing and could get no nursing for me. So we have dealt with alot of things over the years. I have an idea of how things are going to be.

We even briefly considered moving up here but felt like it would be too hard of a transition for the other kids. So please pray that things will work smoothly during this transitional time and we get the medical help/services we need for Selah.

We have had some offers to help us on remodeling the house but nothing is really worked out yet. We find it hard to really focus on things like that right now but will have to soon. Many have asked about how they can help and I will let you know when everything is worked out.

Please continue praying for Selah! Thank you all so much.

Happy Birthday Shad!! Update on Selah

Great news today! Selah is out of the PICU and in a step down room. She is now on a medicated patch for her blood pressure and thankfully it seems to be helping. She is also getting some meds through her feeding tube for the BP. The idea with the patch is it will give her a steady dose of BP meds so she won't have the highs, she still is high but not too high. Today she stay around 118/60, too high but not like 180/110!!!

Tomorrow we are meeting to discuss the next steps. She was scheduled to have some oral surgery before all of this happened so we are hoping to get it done here. Her teeth/gums are in really bad shape. Strong's has a School of Dentistry and it would not be hard to arrange everything and get her through it. Then we will begin the final arrangements to get her home.

Today was mine and Shad's birthday. We went to Cracker Barrel and ate comfort (for me- fried chicken, fried okra and sweet tea!) food. Then we went and let Shad pick up some Lego sets...probably went a bit overboard but he was so happy! He got four sets of different "Lord of the Rings" Legos. Now he just needs the biggest set to have them all! He has already put together three of them, genius boy:) We first planned on going to the Rochester Zoo but it rained so then we were going to their Children Museum, BUT after getting the Lego sets, he just wanted to come back and put them together. He is a trip, he told me we could go tomorrow! Shad is a blessing to our family and we would not be complete without him. I often wonder do his birth parents think of him? Do they wonder what became of the little boy they left on a street? They missed out on so much but we are so blessed by his life!

So for my birthday I did a little shopping. I have a secret, I'm addicted to leggings/stirrup pants. I'm sorry I was a teen/young adult in the 80's and that was my clothes of choice! So for them to be back, in the stores make me HAPPY! So that was fun to go get them.

But what I wanted more than anything was for Selah to "come back to us"...Jon went and was with her this morning till lunchtime and I went back this afternoon till supper and now he is back over with her. It is nice to be in another room and have less worries about her physically but we miss her. Today when we went out to eat, we missed her, we miss her when we put the other kids in the van. Everything has a different meaning to us now. Today at Target I saw her little car that she loves to ride on a shelf & it was like a knife to my heart. Everything reminds us of her.

Five weeks ago tonight was another rainy night. Jon & I had been at the hospital all day, just like we were today with Sam and Sarah having their eye exams under anesthesia. And we had another birthday, it was Selah's birthday. We had a great dinner at the RMH but we didn't do alot in the way of celebrating it because of the weather and that we were all so tired from being up so early. We planned on doing it on Wednesday....we never got the chance. That just eats at me so bad. She didn't get to really celebrate her 8th bday. She didn't understand birthdays but I wanted to do something really fun just for her. It's something I will always regret, the accident happened early in the day on Wednesday and we had plans for later.

Tomorrow will be 5 weeks, it seems so unbelievable. It doesn't seem like five weeks at all to me. There has been so much going on and we've been busy. Tonight I'm in a somber mood. Will I ever get my daughter back this side of heaven? I don't have the answer for that. I certainly hope that God will heal her little mind. But it is hard to believe it will happen.

Growing up I had a rather crappy lot in life. I didn't really have much of a family, certainly not a "regular" family and that was all I wanted. Then when Jon & I married and finally had a child, that was all I wanted. Then we lost our twins in utero at 22 weeks. Eight years later we had Sam, Then we adopted Shad and now recently the girls. I LOVED having a larger family! There is nothing on this earth I wanted more than to have children. We were just so blessed and thankful for all five of them. It seems like, without getting all weird & "voodoo" christian, that I've been "attacked" in the area of family all my life. It is where I've had my greatest joy and deepest sorrow. Truly, it is something I don't understand at all. I've cherished my kids, been awed by the fact that God gave them to us, and just loved them with everything in me. I've traveled around the world for three of them and carried the other two through the worst pregnancies ever:) They've all come with a price! But it has been so very very worth it for each of them. I fight for my kids, I'm rude and mean ( if I have to be for them) and I'd probably kill without a second thought to protect them...but I can't fix this for Selah!

We are grown ups and can take responsibility. I have to say truthfully that I am scared of the new responsibility that lies before us. We're used to kids with special needs, but this is a whole new ball game. But we can do it, sure our lives will change more but it's not like we are folks who are out and about alot anyhow, we're not running off to Europe (except to adopt kids) or Vegas or wherever....

So we will live and adjust...but the last few days all I can think of is Selah and how unfair this is to her. She was living in an adult mental institution most of her life and had just three months with us to be loved on and cherished before this happened. We did many "firsts" with her...but not enough! We still love and cherish her but she seems to be unaware of her surroundings...unaware of us. Today I saw some kids at the mall and it just made me mad that she can't run and play now. After all she has been through to have to deal with this now... The doctors tell me she is in a "dream like" condition and honestly I hope so, I hope she is unaware of things. She just deserves so much more than this!

The thing that keeps me going is the truth I have written about time and again. This world is not our home, this is not the end, life is but a vapor....life is short, eternity is long.....that is what keeps me going. I want Selah to be healed but if she is not, I am so thankful she will be healed for all of eternity. She will live life fully then. Having that deep faith of an everlasting life, keeps me going. Selah will one day live life fuller than many other people will ever know. One day all tears will be wiped away. Those are the truths I've held close to my heart since Sam was born and really since we lost the twins. that truth is what I'm holding onto now also.

I may cry and weep often on this earth but there is coming a day when I am going to be the happiest person in heaven! I have more to look forward to than most! I will meet my twins, I will see Selah, Sarah, Sam and Shad healed....can you imagine? I can not wait for that day! It will be glorious!!!

But I pray that Selah will be healed on this earth, please continue to pray for her. Pray for her, not so much for our sake, but for her! Pray that she will be able to enjoy life again be able to play with her siblings, play with her toys, play outside in her little kiddie pool, swing on the swing set.... all these things that she just got to enjoy for the first time in her life!!! Can you imagine, living the life she has lived, no family, living in an institution, no one to really care for her and then to have a family for just a few months and then go through such a horrible accident. It just breaks my heart.


Even in my sadness, there is still a ray of hope. How can I adequately explain the peace I have, in spite of the incredible sadness in my heart? I do not have the words to tell you. But I can truthfully tell you it is REAL! I've always been a questioning type of person in all areas, including spirituality/religion. I didn't take everything at face value. I had to know and I can tell you now I know that there is a peace that passes all understanding, it's not just a song to me or words in a sermon. Songs and sermons won't take you too far when life's heartaches hit but His peace will. I can't explain it, I'm even a bit shocked by it to be honest!!!

Please don't think I'm some sort of spiritual giant! I am so NOT!!!! Really Really NOT!!! But I've had some practice in the area of trials and the God who brought me through many others, is bringing me through this one. I've never had a particularly outward faith, in that I've not been some great Pentecostal shouter...I don't even like to pray out loud in front of others, I figure I'm praying to God and it is just Not anyone else's business! So I may not measure up to what some think is "spiritual" but I am committed to following God and He is committed to holding my hand! Thank God that I don't have to measure up to man's idea of what a pastor's wife should be! Now I'm not saying, you can just go live in sin and do whatever, the bible gives us specific guidelines BUT we also don't have to be cookie cutter Christians! But we should live to serve God in every area of our life and allow Him to be Lord of our life. But that doesn't mean we all are alike in every way. I used to be a bit envious of people who could be free in worship, but I learned to be comfortable in my own skin and not try to be someone I am not. That is not me, and now that I don't really think about it, I find it so much easier to enter into worship because I'm not comparing myself to anyone else.

So be who YOU are, live a holy life (measured by the Bible not some man made laws/thoughts) Stay balanced, don't use what I'm saying as an excuse to sin, but as an encouragement to be yourself but live yielded to God. Love your family with everything within you. You do not know when life may suddenly change! Hug your kids, cherish every moment, live life in the light of eternity, when you do that, you will stay as far away from sin as you can and as close to God as you can.

Thank you again for your prayers for our sweet LaLa (our nickname for Selah)

Sept 17 update

Jon spent most of the day with Selah and worked on training on her care. He was able to hold her and love on her. We did an interview with the CBS/FOX station to thank the viewers of the Rochester community for everything that have done. Then I went to the hospital tonight and held her for about an hour and worked on her arms and hands. She seemed to relax into me some.

The only thing she is still dealing with is high blood pressures. They go up and down depending on the times of her meds. She is being placed on a patch to help regulate her BP hopefully. The idea is to keep her medicine constant with the hope that will help. She spiked high last night for awhile. So she is still in the PICU at this time.

Everything else is going good physically. Neurologically there has been no change. Please keep praying for her.

Tomorrow is Shad's 9th bday and my ? Bday LOL. He and I share a birthday. We are taking him to the small zoo here and out to eat. He is really excited. Shad has been such a great kid and so helpful through this past 5 weeks. We want to give him a special day.

Thank you for your prayers. I hope to do a long blog tomorrow, sometimes an idea/thoughts just kinda churn around till I have to write it, I'm telling you blogging is good for your mental status:)

More pictures from Sunday

I wanted to show all our friends a good picture of Ken and Lynn! Lynn and her daughter had a horrible accident back in May. Both lived and are doing fine! Lynn is ready to head back to Florida soon!!!! We are so thankful that she has recovered so well. (she was here at Strongs for weeks following the accident!)

Next picture, the kids before church. I just want to encourage you to take your kids (and yourself) to church! We have a reason not to be in church but we are there! Many people have no real reason but that it is too hard to get out of bed! Ummmm thaat is so not a reason! Get to church, Get your kids in church. You will be glad that you did!

Next pic is Jon Sam and me by the lighthouse (I have a thing for Lighthouses-must have been that old song ..."there's a Lighthouse on the hillside that overlooks life's seas.." Who remembers that one????

The Lighthouse of Sodus Point NY on Lake Ontario

It was nice to go to church, eat and relax together as a family today.

Some pictures...

Top picture is us with Ken and Lynn Ginnet our dear friends at the Sodus Point Lighthouse. Then Sarah on the grass for the first time ever (I don't put her on the grass, too many bugs and sand spurs etc..in Florida) then Me and then Sarah again smiling in her car seat:) I can only get 4 pictures on my blog at a time for some reason!



Today we went to our friends' church and then with them to the Sodus Point Lighthouse and out to eat at a Farmer's Market and let the kids play for awhile. Then I came back to the hospital and got to hold Selah for about an hour. She seemed to relax into me some. All her vitals are good, blood pressure still a bit high but not too bad. Please keep praying for her