I get lots of questions....so I'll try and answer some of them for everyone....
How long have you been in NY? Almost 11 weeks!
How much longer will you be in NY? We are not sure. We still haven't gotten a hospital to take her but right now our focus has turned 100% towards getting her into this study. I think she will have to have all the preliminary stuff done and all the testing done and have it started before she would be moved to another facility.
How do you feel about that? Well since January 1 2012 we have really lived as sojourners....from the beginning of the this year we were waiting to leave for Ukraine knowing we'd only have a few days to get ready before we left...we waited and waited until March 30th! It was HARD!! We found out a little less than 2 weeks that we were going then. That whole time it was hard to make any plans because we didn't know when we were leaving....and then you leave on a ONE WAY ticket... you have NO idea how long you will be in Ukraine.....and during your time there, everything is fluid, there are no rules...you just go with the flow... We only knew a few days before we left Ukraine to arrange for our tickets to come home! Then once we were home, we were waiting and waiting for our appointment to come ot NY! There were somethings that came up on the doctors' side that kept us from knowing exactly when we were coming....and it's a BIG trip to come here with 5 kids! So I guess I rather beat down by this year of WAITING and going with the flow. I've learned to do it LOL so I'm fine with this uncertainly, I am not wringing my hands or worrying about finances or anything. God really has it all under control and there is nothing I can do anyhow.... I can not control the situation, I can't control what happens at home or anything.... and its fine.... Although I was MAD as heck (and still am with LRMC) even in that situation I know that God is in control! It's not like I went to bed and cried, I got mad and figured that that would have been the best overall situation and I don't appreciate how LRMC treated us at all BUT ....go with the flow. At this point, I actually have hope that she won't even need such a setting... we will see.... So not knowing anything about when we will go home or where we will go or what we will do, is how we've been living this whole year and I've learned as Paul said "to be content in whatever state I find myself in" having all our kids with us, we're at HOME! I'm not worried about a house....
What do you think your kids have learned through this???? WOW~ it has prepared them for LIFE! This whole year has been a huge learning experience for them. Steve & Shad are pretty good kids. They are probably more responsible than most kids their ages anyhow but now even more so. They've seen God move in our lives and do amazing things and they've seen Him be near to us when we were broken hearted. I think they are well prepared for LIFE much more so than Jon or I ever were. Jon was very sheltered emotionally and where I wasn't sheltered, I didn't have good examples of how to deal with hard times. I think we've been able to walk it out for them, by the grace of God. We don't shelter our kids from anything except sinful things. We feel children should learn to handle themselves in situations, we take our kids on visitation with us, to hospitals, nursing homes orphanages, to funerals, to prison....they've seen it all! They are not uncomfortable around emotions or unusual situations. This has been a year of unusual situations to say the least. Sam really grew up while we were in Ukraine! He adjusted to all the travel and did great! We did planes, trains and crazy old 1970 Russian army vans..... While we were there he learned to walk up and down stairs and to keep his shoes on! He has been quite happy here and loves the elevators! He now sleeps in a twin bed and sits in a regular chair instead of a high chair to eat! He is such the MAN! Sarah has tolerated everything from day 1 leaving the orphanage fine! She is almost walking and has never seemed stressed by being here, except right in the beginning when Jon and I were staying in the RMH in the hospital or in Selah's room all the time. She cried a few nights....but once Jon started staying here , she was fine. She is sooooo close to walking....she pulls up on the couch and lets go and just stands there until she falls on her butt. She is getting quite a butt too LOL She has gained alot of weight, I'd say probably 15 pounds since we adopted her! When we got home with her she wore size 2T but I had to pin the sides of the pants up....not any more!!! I have bought size 5t for her in all her new stuff! She still doesn't chew food but I puree everything and she eats it up! Thank God for blenders!
How much have you been away from home this year? If we leave by the week after next, we will have been away from home 18 weeks this year including our Ukraine trip! CRAZY for me, I am totally a home body! That is more than 4 months!
How long have you been going to NY? Since 2007 when Sam had his corneal implants
Why did you take Sam to NY couldn't someone in Florida do his eyes? No! He had had corneal transplants that had failed and saw doctors in Miami at Bascom Palmer Eye but they had nothing else to offer him and this was his only chance at some sight. The corneal implant was rather experimental 5 yrs ago but it has worked for him and worked well. We tried to do follow up in Florida but it just wasn't working and there is no doctor we have as much faith in as we do Dr Aquevella so we decided to take the plunge and commit to coming here yearly. It is a big commitment for us financially but we generally make it our family vacation, so we save money and we do stuff on the way up and down (we drive) This year we were going to go on as short of a trip as possible ...yeah I'm laughing & rolling my eyes at that one.... we didn't plan on anything going up but Jon talked me into a few hours in Mt Airy NC (aka Mayberry- Andy Griffin's hometown) and now I'm glad we stopped. We usually do something up here with some close college friends who happen to live here and we ALWAYS have included a day trip to Niagara Falls, one of my favorite places in the world!!!
How is Sam, did he have any after effects of his near drowning? Sam is fine, he suffered no after effects whatsoever. Dr A checked his eyes a few times for infection from the dirty water but he's had no problem. He never seemed traumatized by it or mentally affected in any way at all. One funny thing he has started doing, is when he walks he looks behind him constantly...Steve said since he has "cheated death" so many times in his short life, Sam is making sure it doesn't sneak up on him! We have to laugh at that...but Sam gets little "tics" and that seems to be his tic of the moment.
What are your kids doing for school? Shad is about a year ahead in his books so we aren't too worried about him. Steve has done 12 books so far this year. They go to a christian school that uses the PACE program so they generally work independent so it's not odd for him. We do not know what we will do when we get home about school this year. Shad had a scholarship through "Step up for Students Florida" that covered his books and tuition. He lost it since we've been here so long, so I may home school them both this year. Lord help us all.....
Is Jon's jobs secure and how is the church doing? Jon is a pastor and also the chaplain at Zephyrhills Correctional. Thankfully Jon had annual and sick leave that covered him until this pay period. He is now on FMLA (Family Medical Leave Act) and is on leave without pay. His job is secure and the prison is 100% supportive of our family. Grace Church is going on as usual! The church existed long before we were born and isn't dependant on us being there:) The folks have remained faithful in attendance and giving. Some of our "snow birds" have begun to return. We've had two friends who are ministers filling in for us. A member's husband is cutting the grass and keeping it up ( Steve was very happy to hear that he had visions of 7 ft grass that he'd have to cut lol) Our music minister and our audio/visual man (new title Jim ) have kept it all together for us.
Who is taking care of your pets & house ? A couple from our church has the dogs and goes to feed the cats daily. (thanks Jim & Pat)
What is it like to live in a Ronald McDonald House for 11 weeks? It's fun, we have one large bedroom and a bath. we have a crib for Sarah, a twin bed for Sam ( and boy does he like that! he sleeps in a crib at home) a twin bed with a pullout for Steve and Shad and Jon & I share a queen bed, yes all that in ONE room LOL! It works.... We tend to stay up later here than at home and still get up early most days. Our family has kinda taken over the smallest tv rooms (there are 4 tv rooms) and it's the closest to our room. We use a baby gate to keep the little ones in during the day. We usually watch FOX news at night together. Tonight we went out and bought the new release of MADEA "witness protection program" Tyler Perry is one of my fav actors/directors and Madea is truly truly me without all the cussing. We had a popcorn party in the big tv room and lots of laughs with several families:) There is a little Madea in all of us:) Ok back to the RMH, we get up and fix breakfast for the kids, one of us goes to the hospital, the other stays with the kids (that's a rule here that children have to be supervised by a parent) the one that stays here usually does laundry cause we still only have a few outfits apiece of warmer clothes! Then it's lunch time, we've been trying to eat healthier so we been doing some of our own lunches, just frozen food from Trader Joe's or sandwiches. Then the little kids take a nap, then it's time for supper. We usually eat supper here UNLESS it is pasta, we're a little over pasta at this point! Which ever of us is at the hospital, comes home for supper and usually the other one goes back after supper unless Selah is absolutely asleep, which has been more often lately. Then by 8 or 9 pm we watch tv together.
One really neat thing is the other families you meet, we've met some of Dr Aquvella's patients, including a family that I really encouraged to come here last year! That was a treat!!! Some families are jsut here for a day or two, some for weeks, like us and those are the ones we usually get to know. It really helps to know you are not alone in your journey. The kids may all have different problems but as parents, we all feel the same. Here everyone is the same, maybe in "real life" we might not have ever met but here we are all connected! It helps me, I guess when you see ALL the suffering and hard times that happen to other families, it helps you put your life into perspective!
Getting to really know the staff and volunteers here has also been great! Before this time we had connected with them all BUT this is so different. They had always remembered us because we came every year from Florida but now we are the longest staying family at this time (they did have one family that stayed over a year~ we kid around and say we are trying to break the record) This place has really become our home away from home! It's not been hard at all to stay here for us. The kids love it. Steve and Shad will hate leaving, they get so many treats here (like tomorrow night we are going to the circus and getting to go in an hour early for a special show) Sam LOVES the elevator! He is just enamoured with it! LOLOL Sarah has been here almost as long as she was in our home and she has just done great, no issues whatsoever, talk about a kid who can go with the flow! She came out of a mental instituion , to a family and then to another house....
What do you and Jon do for "down time" ? We read alot! I finally can conertrate enough to read something besides Nancy Drew....that was ALL I could read for the first month, I'd get stuck on the same page....my mind was a mess!!! Of course go on the computer more than usual. We try to do stuff together a couple of times a week with everyone, whether it is a trip to the store, the zoo or something...
Is Selah still in a coma and what does that mean? Yes she is. Comas have different levels to them. She is probably still classified as being in a "persisant vegative coma" similar to the Terri Shivo case in Florida years ago (so sorry for Terri and her parents!) The depth of the coma depends on the amount of damage to the brain and the amount of healing to the brain. She has swallowed but only 2x that has been seen. She does open and close her eyes and blink. She moves her mouth and tongue at times. She is responsive at times. It is similar to being drugged I'd say as far as her responses are slow and sometimes not there. The kind of brain damage she has, is only repaired by the brain recoverying over time. It's not the kind you just "wake up from" like you see on TV! That is so NOT what a coma is like! In her case, as in any drowning in which the heart stops, the chance of full recovery is 0%. IF the heart stops more than 6 minutes some brain damage occures, if it stops for 30 minutes or more like Selah, there is little hope....I think she is exceeding the medical expecations on her own (since there seemed to be none) but hopefully on the fish oil she will quickly begin to recover. She has come further than we thought she would already so we are so thankful!
What's the weather like? Depends on the time of day you are asking that question! LOL Fall up here is very different. we have literally had major temp changes throughout the day, so you don't know if it will be cold or nice or rainy when you walk back outside again! But over all it is much colder here than Florida is this time of year! We kid around that we are holding out for SNOW!!! Steve only saw a little dusting in the air in Kiev and Shad has never seen snow..... Everyone here tells us to be quiet LOL! We had only packed shorts & tshirts! I only brought sandles because it was hot and I'd just had foot suregery...Thankfully Macy's took us on a shopping spree and we got a couple of outfits each for cooler weather! I've also hit the thrifit stores too!!!
How is the foot? completely healed! If you don't know, when we got home from Ukraine, I got a "spot" on the side of my foot. Got it cut out which hurt like the dickens. That didnt' help, had it cut out again and that did not help and two more "spots" grew....it was HORRIBLE! I had nerve pain that really incapsitated me, I had to use a cane ( and I'm used to walking MILES a day!!) FINALLY changed doctors and had yet another surgery the day BEFORE we came up here. He did lasar surgery on the two new spots (and do NOT let anyone tell you it doens't hurt...Oh MY LORD it hurt) and he cut out a THING out of the side of my foot that looked like a stinking MOLAR! When he told me he was going ot have to do another surgrey #3.....I actually cried! But I let him do it and that was what was pressing on my nerves and causing the awful pain! So the gorge in my foot has healed and the two spots fell off....and NO I never got a real diagnosis on any of it other than"that is the craziest looking thing I have eever taken out of someone's foot" LOL! BTW, the accident happened less than a week after that surgery and when I saw all the emergency vehicles at the end of the road, I took off running....just knowing in my gut it was Jon and the kids....I forgot about my foot for about three days, WHEN I remembered...there was pus coming out (sorry to be so gross) but it is interesting how I did not even notice it for days despite the pain it must have been giving me.
Where do you go to church? Well except for last Sunday when we acutally slept until 11 am,(didn't bother with an alarm because we usually wake up by ourselves) we have gone either to Calvary Assembly of God in Chilli or Christian Community Church in Williamston.
What has been the best thing about all of this? Well there has been many "best" things....FIRST the sweet presence of God as we have walked through this as a family. There has NEVER been a moment that I have not felt God's presence. I started praying in my mind as I was running towards the emergency vehicles......and He was there. One day I will tell my story of that day and how God was with me. Alot of it is blurred in my mind, but the one thing that stand out is GOD! The second thing is the LOVE of others...from the second it happened and the resuceors stepped in, we have been surround by love & support. In the ER there were people there for us, friends of friends, ministers, our friends from this area, strangers, staff of the hosptial, all there to love on us. We've been sent gift cards, hats, PJ's, all kinds of things that have given us a smile! People come up to us and tell us they've been praying for us, for Selah since this happened! Just tonight at Target, we met a mom of a SN child and she said her and her church have been praying. Rochester NY is a wonderful caring town!!! And our family and friends back home have done so much for us!!!! Friends from all over the world praying in CRAZY places for our family and Selah! People that read this blog and pray.....it's been unreal. I can truly say my faith in humanitly has been restored!!!!! It's been unreal the love we have been shown!!
What has been the worst part? That is also easy....the pure terror that your children are dead or may die...the terror that your child will live but never even know if you are there beside her...so so so scary....the first week after the accident my mouth stayed so dry ALL the time. It was literally a physical reaction of fear 24 hours a day! I also shook, actually vibrated from the inside out, I could not stop the movement. It would worsen when I laid down to the point the bed would shake. Qutie an unsual physcial manifastion....I am still sore from it!! I really really want to go get a massage...if anyone reading is a massause let me know.... The dry mouth and shaking lasted about a week...and lets not forget the throwing up ( the first couple of days) and the awful direahhe ( the first month or so) My body reacted to fear in a way I've never expirenced on that level!
Was Selah ever dead? Yes she didn't have a heart beat for over 30 minutes, she was dead. The oficer that worked with Sam at the scence does not feel Sam had a heart beat either so he probably was gone too.
Was Selah ever brain dead? Not from the time she was brought back....I even think she breathed over the vent the first day ( it was set on 16 breaths a minute and it usually registered 24 breaths a minute, meaning she was doing extra breathing.
Have you ever questioned why she was brought back? Selah required 4 shots into her heart to get it back beating....there were times in the begining when I did wonder if they didn't try to hard to bring her back. Both Jon & I prayed seperately for God to take her if she was just going to lay there. I didn't tell him nor did he tell me until just a few days ago. BUT we believe God is in control of our lives and of Selah's life.
Do you ever doubt your decison to put in the trach and feeding tube? Nope! She was not brain dead. We were not going to starve her to death nor let her drown in her own saliva...we have to stand before God one day. We had to feed her most of her food anyhow so what is the big difference in a feeding tube and me feeding her by hand? She wasn't feeding herself before, should I let her starve just because she now wasn't eating by mouth? Since God has enabled doctors to come up with such cures/helps I feel we should use them. Plus can you imagine NOW that there is this HOPE of a help for her....what if we'd let her go...wouldn't we be wondering NOW if we did the right thing?
How do you all handle the accident emotionally? That is the million dollar question..... The mother of the police officer who was with me from the scene to the ER told his mom the first thing I did was comfort Jon by saying I didn't blame him. It stuck out in his mind because he has been invovled other situations where family members have been awful to each other in situations like this. I just kept telling Jon I know how quick something like this could happen... how did I know? It had happened to me. When Sam was a baby I took him and Steve for a walk around Lake Parker and I dropped the lid of my water bottle on the ground, bent down to pick it up and the storller rolled into the lake. The differnece being it was a shallow Florida lake. The wheels got wet and it bogged down a bit in the mud. It scared me not that he would drown but there are HUGE gators in that lake and I was afraid one would come over. It was all over in probaly less than a minute but it scared the poop out of me!!!! I turned around and went home. This may sound absolutely crazy but I THANK God for the expirence I had....otherwise I may have blamed Jon. I know how quickly something could happen. That happened to me in seconds!
Also I know Jon and the person he has been for the 23 years we've been married and the almsot 17 years we've been parents. He is the most careful person in the world. He is a slow safe driver, he thinks of things that could happen to the kids and is just as much of a worry wart as I am. I've never thought he had ever put any of our kids in danger and actually sometimes would get annoyed with him for being slow and so particular about things. That helped me also!
There has been alot of guilt we have had to work through....I've felt guilty because Jon had asked me a few times just to pick him up a watch at Walmart since his good one had quit working. If Only I had gotten him one....I've felt guilty that I wasn't with him, I've felt guilty that I offered to take a family to the airport...if I hadn't he wouldn't have looked at his cell phone to check the time, I've felt guilty because that morning we knew Sam needed to go outside and he asked me which girl I wanted him to take with him....I've often thought if I 'd said just take Sam, then he'd taken the smaller stroller and even if it this had happened, then the outcome would have probaley been different, he could have dealt with just one child and a smaller stroller better. Steve felt so bad that he didn't go walking with Jon because Jon had asked him to go but he wanted to play a video game or watch tv and said no. He feels if he'd gone it probably wouldn't have happened and if it had he could have jumped right in and helped.....
Jon, of course , has been tore up about this whole thing. His first real words to me in the ER hall was "we rescued her from a mental instituion for me to lose her in the canal" He thought she was dead. It was an awful time and there have been moments that are just too raw to share but God is our help. God has helped him deal with it and has helped all of us to quit blaming ourselves and second guessing every step of that morning. One thing that helped me is to think of Jon's mom. She was killed in a car accident that was basically her fault. We don't blame her for having the accident. We see if for what it was, an accident. So in the same way, I look at this as an accident....something that happened to a family that is very cautious, but not perfect. I look at what Jon did with super human strentgth, how he saved both children. The other rescuers can't beleive he was able to do what he did! He doens't look at himself like that yet but when I went back to the accident scene, I saw just what Jon did and it was mind blowing. There were moments where feelings rushed over me in the begining...but God also helped me through that time. I thougth about going to counseling but I've found over the years there is no "secret" counseling out there , you've still got to deal with things in your heart and with God and that it what I did.
What is your hope with the fish oil study? Well our hope is that she will FULLY recover! That is our hope, it may not happen. We do expect to see some changes and growth.
How did you find out about the fish oil? There was a story on CNN that was sent to me by a college friend and a person who reads my blog. I have been sent lots of things since this happened and looked at some things but this story resounded in my heart as a real possiblity! I wrote about it on my blog, I wrote how we immediately went and bought TWO BIG bottles of gelcaps at CVS! The reson we did that is a nurse told me tha sometimes the hospital allowed parents to give their kids vitiamins that weren't prescribed throught the pharmacy so we were prepared on Saturday to draw out the fish oil and put it in her gtube LOLOL We have already laughed about it and how dumb we msut have looked but we were EXCITED!!!! Then I got an email from a lady who reads my blog and uses fish oil for her daugher for another reason and she knows the Dr Barry Sears personally so she put us in touch with his assisatant and they got the ball rolling!!!!!! BTW the fish oil we will be using on her isn't like the kind you can just buy at the store, it is very pure and stronger.
Has she been in any other studies? When I was told she was unlikely to survive, I immediately asked if there were any studies being done. I jsut think like that because of Sam. The doctor told me there was a study of "cooling sheets" that the hospital was in. I said "put her in it" He told me he needed to go over stuff with me and I told him to" just put her in the study...what have we to lose at this point???" We 've also laughed about that now, the doctor told Jon later they had never put a child in the study as fast as they did Selah! I think it was only 3 hours before she was put into the study (it is invovled & requires alot of paperwork) I think he said it usually takes 8 hours....I think they thought I was a crazy mama! The cooling sheets kept her body at a lower temp and may have helped her.
What will you do if there is no change at all? The same thing we've been doing...trusting God! Our faith is not in anything but God! Sure we are hopeful but God is our Hope!
So that is about all of the questions I can think of that has been asked....
