LOSS IN UKRAINE

 

This war is becoming more personal.  Last night a man we knew and worked with during our adoption was killed in Kyvi

Serge worked with us on our complicated adoption. He went with us to the Ministry of Adoption where we were given the girls files. He “liberated” the few baby pictures we have of the girls from another file. He arranged our transportation & apartments while we were in Kiev. Last night he was killed as he fought for his homeland (although he was an American citizen) May he RIP & receive his reward for the good he did for the orphans.

**** it seems he is the first American to die in this war.

Please pray for Ukraine! Today our church raised $1300 to help out a church in Ukraine. The pastor and staff we have known for 10 years. We hope to continue to help!

The other group I can endorse is Life 2 Orphans. We have worked with them over a decade!

https://www.life2orphans.org/ Life 2 Orphans They are raising money to get some orphans out of Ukraine and for food and meds

My heart is sad. Please world do more than just light up your statutes! HELP UKRAINE!!!!

Ukraine

 It was almost 10 years ago that we flew to Ukraine to get our girls.  To be honest when I found that Sarah was in Ukraine I had to go to the globe and look for it.  Of course I knew it used to be part of the old USSR and I knew it was in Eastern Europe.  That's where my knowledge ended.  After 2 months in Ukraine my knowledge of the country had grown as had my love for it.  I've never lived in another country for such a long period of time other than the US.  

We really fell in love with Ukraine despite the challenges of daily life there.  We had a wonderful facilator and once we got to the girls town we found a church to worship in and were completely embraced by their love.  It was difficult to communicate but we managed.  We've kept in touch with so many from Ukraine and have made new friends since then of different ministries that work with the orphans and special needs community.  

I hated to leave in some ways and we had hoped to return but were not able to do so.

In 2014, just two years later the area our girls were from fell under Russian rule and many friends left because they were not wanted there.  Our ministry friends just moved to another area and began a work.  We encouraged them years ago to relocate to the US but they told us they were where God wanted them to be.  

Now they and others have no where to go.  They are in harm's way.  I'm being careful with what I'm writing tonight because ai do not want to cause any harm to them.  There are so many people facing unimaginable terror.  Our hearts are broken.  Our TV is on constantly and I'm scanning the internet trying to check on all the ones we care so much about.  

The original place our girls were at was closed and all the children/adults were sent to another orphanage in 2014.  We've kept in touch with many and our church was able to do their Christmas program this past year.  

Now so many in harm's way.  We have friends who work in various ministries throughout Ukraine.  Most left a few have stayed..... A family I know completed the adoption of 3 children recently but one had passport issues and could not leave the country.  They were forced to leave him while the government works on his paperwork.  

Please join with so many others around the world and pray for the peace of Ukraine and supernatural safety for the most vulnerable.

It's odd seeing so many posts about this country (and of course everyone is an expert lol)  Today we saw a video of the very street we stayed on in Kiev!  Surreal!    We constantly see video with the backdrop as the big church that the Ministry of Adoption was behind. 

I have so many news articles posted on my public FB page and I'm tempted to put them on here too but it's so sad.  Our hearts just break!  We knew even back in 2012 there were rumblings and of course 2014 had so much happening but then there was some "peace" even tho Doneskt was occupied.  But now this is worse than I could have ever imagined.  

Please pray for Ukraine!  Our church will be sending some financial help.  Every penny that comes in will go to help the people of Ukraine.  If you would like to give please write a check to GRACE CHURCH 7060 Berry Road, Zephyrhills FL 33540.  If you give to any ministry or humanitarian effort make sure you know who you are giving to.  I'd advise to give to someone who has been in country for a long time.  Don't give to anything you don't know about!

The loving people of Ukraine are showing the world that they are brave.  In fact some of their bravery is absolutely heartbreakingly brave! 

Doctor Visits

 We have been busier than ever with doctor visits for Sam and Sarah.  I'm not sure if I shared on here that their beloved pediatrician retired last year....without my permission LOL  I was devastated.  He was one of a kind-old school and he always supported and guided me.  We'd been together since Steve was little so it was a blow!  THEN I had to find a new one....Lord....  I knew I was not going to stay with the practice without our doctor so I tried a new doctor ...she was a mess  Just the way she talked to me I knew she was not for us.  Then we tried another doctor within the same medical association.  I liked her and we really bonded but after getting various requests from some of the folks who deal with my three kids the Office Staff decided our kids were not a good fit for them!  Yep the office staff did not like all the requests that came through monthly for my kids.  Evidently the nursing agency asked for some type of paperwork and was angry when the office staff couldn't or wouldn't do what they needed.  I knew nothing about it until it was resolved.  Anyhow I actually cried when I got the call from the office manager.  When I say cried I meant from anger!  I demanded the doctor call me herself.  She did and apologized about the whole thing and I believe it was from her heart,  She told me even the other doctors in the practice did not want the responsibility of dealing with my kids-they were not set up for such medically complexed kids.... ho's that for a kick in the gut?  A trained doctor didn't want the responsibility of what we deal with on a daily basis.  (after i typed all this I saw I had already shared it-oops it  was awful!) 

Thankfully I had already been looking around before this since Sam and Selah turn 18 this year.  I had an appointment for Sam at Orlando's Arnold Palmer Complex Care.  A Complex Care doctor cares for the person from childhood-adulthood...

So Sam went a few weeks ago as I shared earlier but now we are starting on the rounds of various specialists for him.  Last week we went to the pulmonologist.  Sam has absolutely terrible sleep apnea.  Some of it is still due to his prematurity.  He has very small airways.  We had taken him to an ENT & there was talk of removing his tonsils and adenoids and even doing some work on his nose!  But after hearing it would probably only help him by 10% we were not willing to put him or us through that.  Sam can not wear any type of c-pap.  First he would not wear it because he is so tactile defensive.  Second when he messed with it _not if- the pressure of the oxygen could literally blow out his eye if he were to move it near his eye.  So he has a hospital bed which has helped alot and he sleeps with a pulse oxygen monitor on his foot.  But he has terrible episodes.  We are used to seeing very low numbers like heart rate in the low 40's oxygen levels in the low 80's..... his actual heart rate runs around 60 at the highest.  His machine had to be reprogrammed or we'd be alerted dozens of times some nights.  They are going to be doing some testing to see if there is anything we can do.  In fact a respiratory therapist is coming to our home and doing some tests on him.  For that trip I invited Daddy to come with us!  I did not want a repeat of the last visit.  One thing that was so neat is that we stopped for gas on the same exit our son Shad is training at a prison and he was there on his lunch break!  That just made me so happy to run into him like that!  Sam has a slew of appointments coming up in May.  Right now I'm planning on staying over a few days in Orlando with him.  Follow up with pulmonologist follow up with the pediatrician, Upper/lower GI and an appointment with a physiologist and some other testing, x-ray and blood work.  At the same time he also is having a SSI hearing via phone.  It's going to be busy!

Sam got his reward at CFA

Sarah has her first appointment with the CC pediatrician in March.  But yesterday we took her for a 2nd opinion regarding the gastrology problems she had.  It was very interesting to say the least.  We went to Shands in Gainesville. Where I'm from in Perry- Shands is revered by all so it seemed like a good idea to take her there.  When I was a little girl that's where I went for my eye condition.  It's a bit of a drive and my husband hates to drive on I-75 so we went the back way.  It was beautiful but it seemed we traveled for hours.  It's very hard to call in to them and I tried several times because I could not read the exact time, we were supposed to be there that was written on my calendar.  At one point I didn't even have cell reception.  I had the appointment written down but last week when I got the confirmation call I was told to be there 15 or 30 minutes before the appointment.  So I wrote on top of the original appointment.  It was bugging me because I wanted to be right on time.  When I finally got a person she told me my appointment was at 2;30 on MARCH 21.  At that point we were 20 minutes from the office.... luckily, they fit us in because it was not our fault.  I even got a confirmation call and they don't do that over a month before an appointment!  Shands is great just huge.  We had forgotten how difficult the process was, we remembered when we were there that we had brought Sam there when he was tiny and spent 4 hours waiting in the same office area we were at on Monday.  Talk about repressed memories!  We could not figure out WHY we had brough him there.  Then we remembered it was for neurology and he screamed for 4 hours as we walk and rocked him.  We said that day we would never go back to Shands.  But since it was such a horrible memory, we still went back LOL This time there was no wait, but we did have to see another doctor not the one who specializes in her issues.  This new doctor looked just like Shad and not much older than Shad.  That was a little off putting but he listened looked at the records and was quite disturbed by what our daughter went through.  He has some concerns and wants to do some testing in the future but right now we are just going to let her insides heal.  He felt her case was very serious and was amazed by all the scar tissue that the surgeon encountered.  Her insides looked as if she had had surgeries and was left with many adhesions and scar tissue.  She will be returning and seeing the original doctor we were scheduled with to look into this.  

Sarah was very mad at the doctor's office and would not hold my hand!  Lord help me for 10 years that girl has kept her emotions inside.  She has always been a little too compilate and would giggle in a nervous way if she didn't like something.  She has seldom cried.  It's "easy" for us but not healthy for her...well...she has found her voice and her anger!   Most of it is directed at me when she has to deal with a doctor.   It's kinda funny but only because I know what is going on.  She finally feels safe with me so she can show her real emotion.  She still nervously giggles with doctors' and nurses.  But with me she yanks away from me and makes her anger sounds.  But once we got back in the van she was happy especially going to her favorite restaurant Olive Garden which is about the only one we can go to now with her!  She can have pasta fagioli and since they have a bar they will puree her soup.  It actually lists that soup and a vegetable soup as non dairy.  The doctors say her lactose intolerance is very high.  So we avoid all dairy products.  Now I really cook from scratch because you'd be shocked at how many foods have dairy in it.  I'm happy to say she has not had one swelling episode since she has been home,  This doctor (unlike all the others) feel that we have solved the problem.  He did feel like there were times her intestines got "crinked"  or had a volvulus because there was no reason for all the scar tissue she had inside her otherwise.  He said the new extreme lactose intolerance caused "the perfect storm" which brought the malrotation to our attention.  We have a theory of why she became lactose intolerant when she did but I want another doctor to confirm it first before i share it.  

I love her smile and yes she finally held my hand

Thank you, Olive Garden, for always pureeing her soups!  It makes it so much easier for all of us.  Every OG we've ever gone to has done this for us with no hesitation and it is greatly appreciated!  

Sam and Sarah both have hearings with the Agency for Persons with Disabilities regarding their respite hours.  Thankfully I have an attorney now helping us with this situation.  They all three have a hearing for SSI in May.  We have been contesting their decision since 2017 or so.  It's been crazy!  And Sam has his guardianship hearing coming up soon to for us to be appointed as his guardians since he is now an adult.  

Oh gosh the funniest story..... we are just getting used to our home without nurses here 24/7.  I enjoy it except I sure miss those nurses when I'm here alone!  A few days ago, I was working in my office and I hear a pounding on our side door.  The dog went crazy.  I came running to the door yelling and asking "who is it" I mean I live in the country, our yard is fenced and gated with a lock on it.  We have the No Trespassing signs up and most folks obey because they worry about country folks.  Well this one didn't!  When I asked who it was he said "Sheriff's Office!  I looked out and it was a deputy and I could see his cruiser down the driveway.  Well that scared the heck out of me I thought something had happened to one of my family members, so I shut off the alarm, put the dog in a room and ran out asking what had happened ...in my PJ's with no robe!  I didn't even care I was so scared.  So, he unexpectedly asked for Sam Clanton!  I immediately thought someone had stolen his identify and committed a crime!   Then the cop asked for me by name!  That made me think someone had called HRS on me for some reason so by that time my terror had been replaced with annoyance.  Then he told me he had to see Sam and read a notice to him.  Well Sam was still in bed so I remembered to grab my robe and I took the cop to see Sam still a little confused.  Sam was quite confused when I woke him up, LOL But he got up and sat in my lap as the officer read the whole 8 pages of the petition of Sam's guardianship to him!  Sam did not object.  Once that was out of the way the cop loosened up a little bit and I told him how nervous he had made me.  We laughed a little but with a husband working at one prison and a son doing the law enforcement training at another one....anything could happen.  

So now you are all caught up!  Selah is doing great in her group home.  Steve is doing great and so is Shad!  Tomorrow I'm planning on going to see Selah.  I hope to see the boys this weekend.  Both are great about calling (usually when I'm busy doing something else) but I hear from them almost daily.  Steve has gotten in the habit of calling me on his way to work and I love that even if he wakes me up:)  Shad goes to work so early that he usually calls me on the way home.  I love that they are living together for the next couple of months.  

Can I ask you to please pray for a very special family friend who is facing a very serious health problem.  He is walking through the valley.  Pray for God's peace and Prescence to be so very strong and real and that every fear will vanish.  It's hard to see a close friend go through such a hard time.  We need a miracle for our friend.  

Chicken Can Be Bad For Your Health

 Thank you for all the kind remarks on my blog, on FB and in messages!  It meant a lot to me to have support.  Yesterday I went to see Selah and she was doing so good.  One of the respiratory therapists was doing her vest and cough assist, after all that is done, she goes to bed for the night a bit early so her feeds start.  Selah's has a feeding tube and we chose in the beginning to run it 12 hours throughout the night.   It sounds odd but she has never had one issue with reflux nor have we had to bother with it when she's out for appointments.  They are working hard to keep her on the same schedule she was one at home.  I meant to get over there earlier, but something happened....

The something that happened was I almost choked to death!  Yesterday was a great day because I got a lot done in the morning including getting the dog to the vet for her allergy shot.  That sounds like such a small thing, but it's so involved and usually takes forever.  Then I got a chance to get a quick late lunch with a friend.   We met near Selah's group home.  We were having a great time till I got a piece of chicken stuck in my throat.  I mean really stuck!  I started drinking sweet tea to wash it down, but the tea came right on back up my throat!  At that point I got up and motioned to my friend to follow me to the bathroom because I didn't want to cause a scene.  I could breathe but it felt like every breath was getting harder to get.  Later when I was trying to explain it to my husband, I compared it to having a pin hole size area to breath out of!  The restaurant staff seemed relucent to do the Heimlich Maneuver because I could still breathe and I think we were all afraid that if it went wrong, I'd have it stuck where I couldn't breathe.  After a few minutes the workers decided to call 911-by that point I didn't care about being embarrassed!  Things got real real to me and I started praying in my mind.  Repenting is more like it! But I had a peace in an odd detached way.  I literally started thinking "I can't believe I'm going to die this way!'  At that point I could still breathe but with every breath I was thinking it might be my last one  The staff and others had followed me into the bathroom and were trying to tell me not to gag but it was like when you're in the middle of childbirth and they tell you not to push-there was no stopping my body.  At one point I reached my hand in my throat as far as I could go because it seemed like I'd be able to reach the piece of food but I couldn't.  Then I heard them said the firemen were there!  I felt like I'd make it then even if my airway closed up.  Right when the fireman walked in the bathroom I gagged and swallowed the chicken!  Luckily he is a friend of mine and of course everyone was relieved and started laughing.  I just told the guys that their good looks did it for me!  

So I've decided eating healthy chicken is dangerous for your health!  I should have gotten a hamburger like I wanted instead!  I'm  thankful for my dear friend Kandi who was with me through it all, Nick and his buddies that came to my rescue and the staff and other patrons who were concerned for me!  

Then a funny thing happened as we were walking out to leave, my friend's mom ran in, she saw the firetruck and ambulance there and knew her daughter was there, so she was checking to make sure her 50 something year old daughter was ok LOL A mother's love & concern.  It was cute!

This morning I woke up with a very sore throat!  

Today was much lower key-I did manage to take a mama cat and three kittens to get spayed/neutered.  Thank God!  Now they can go live outside and not on our back patio! Anyone want a cat?  And Sam and Sarah got their hair cut.  Both have lots of medical appointments coming up.  Tomorrow Sam sees pulmonary due to his sleep apnea and small airways.  Monday Sarah goes to Shands in Gainesville for a second opinion on her tummy situation.  After all the mistakes that were made in her care, we want to make sure there is no other surprises!!  If you live in the Tampa Bay area and need the service of a gastrologist for your child.... my advice is go to Shands.  The gastro practices are all somewhat interrelated.  I've had concerns for years but felt like I was stuck but after the many misdiagnoses that my daughter endured, I absolutely wish I would have followed my gut and gone to Shands earlier.  We did see another practice for a follow up, but their reviews are so low it's scary.  Then I remembered I'd taken Selah to the other practice before and had a terrible experience.  So I'm pretty sure that's not for us.  We are hopeful that there are no new revelations, but we want to know for sure.   

Selah's Update

 January was our 9 year anniversary of bringing Selah home from the hospital on 24/7 nursing.  The first 6 months were really hard for us back in 2013  We had the bottom of the barrel nurses for the most part cycling in and out of our home, many who did not even bother to show up for their shifts.  It caused so much stress.  Then after a few months home our own Mary Poppins of nurses came.  Everything changed... Selah stopped being in the hospital for bi weekly problems and infections.  Our nurse Rose taught everyone how to properly take care of Selah.  She was able to tell a nurse friend Kathy about our case and  then she began working with Selah.  Then Lexion who had actually worked a few weeks in the first month or so came back from a medical leave and began working again and Selah's core team was set.  Those three ladies kept things on track and Selah thrived.  They kept the shifts covered and worked together as a team.  Occasionally we had other nurses for a season.  Some I let go some were here for experience before taking other jobs. (one of them is now a head nurse supervisor at our local hospital!)  Through the different changes we remained staffed which is necessary for our family as we have Sam and Sarah!  With Jon working full time in the prison as a Chaplain and also as a pastor we didn't have much of a fall back plan if we did not have full time nurses.  We do get some respite hours for Sam and Sarah but that's not something we have on a regular schedule due to our dear caregiver's other responsibilities plus we only have so many hours although we have request more and will be having hearings to try and make that happen.  (Unfortunately we have to have a hearing because we were denied and in Sam's case all his hours he has now has been taken away!!! Yep! I am furio0us but that's another story)

In 2021 we had a major problem with nursing care.  The agency began only allowing so many hours of overtime for our nurses but they were not sending any new nurses to fill in those hours.  It came to a head in April and I had to call Tallahassee and everyone I could think of to require them to fill our need as one nurse was going out of town for a few days.  We had everything settled and approved prior to the problem but all of a sudden the agency changed everything.  Although I got that all settled it literally took two days of me working on it and too many emails and calls to count.  At the same time I was dealing with a medical problem of Sam's. Selah's needs have changed in 9 years and so have Sam and Sarah.  In stead of things getting easier they've actually gotten harder as they have aged.  In the very beginning I could still care for all three of them because I had Steve & Shad home to keep their eyes on Sam and Sarah.  Well those days are over and there is no way I could safety care for all three at the same time.  

So after that horrible situation in April I realized what many people were telling me was true that we had to find a safe nursing/group home for Selah.  I'd been resisting for a couple of years, holding out hope we would get new nurses as all three of our nurses were retirement age with one being in her middle 70's,   The only thing I could do was pray.  My emotions were all over the place, I was sad scared for Selah angry as hell at our nursing agency which is a hot mess!  I tried getting a new agency...no one could provide nurse for 24/7 care.  I worked with our insurance and got permission to split the case with another agency but that didn't work out either.  One day a friend called and told me about a new small group home in our area....something told me that was the place for her as soon as I heard about it.  

So then I began researching and finding out more.  Everything I found out I liked.  Then the group home had to go through more qualification to take Selah since she is only 17.  They did so much work to be prepared to accept her in.  It was very emotional for us.  I backed out several times in my mind and even a few times out loud.  We had some very sad moments.  Every time Shad and Steve were home spending the night I'd think "is this the last time we will all sleep under one roof?"   Believe me that just broke my heart!  It's been incredibly hard for Jon.  Many times as we would hit snags with various agencies/regulations I just prayed that if it was not the right thing to do that it would just not work out.  It took 9 months to go through the process.  For us that was needed it helped us to cope with the decision and come to terms with it.  Also there were other issues with the agency along the way that made me see that sustaining nursing care in our home 24/7 was going to be impossible.  

The group home has only 6 patients per home (they are expanding in the Tampa bay area)  It is actually a home in an upscale neighborhood that has been remodeled.  There is no institutional feeling about it.  It never smells - I've gone in at all different times and it's well staffed.  They have several amazing components.  The group home has full time respiratory therapists around the clock.  They have a doctor on call who comes in weekly and they can do so much medical things in house.  That is huge!  

So last week the day finally came to move Selah.  It actually went off without a hitch.  She has done marvelously and the group home is working hard to maintain her normal schedule.  They have been very gracious to us and her.  Saturday we got the last of her things moved over, and I was able to just relax with her outside for awhile.   It was not as hard as I thought it would be.  We've gone over often- this week will be a challenge but tomorrow I'm combining a doctor's appointment for Sam with visiting Selah.   We want to see her several times a week.  The nice thing is when I'm with her the focus is completely on her.  Saturday I was able to connect with her in a way I have not been able to in years  The pressure of nursing care is off my shoulders.  Even when things were going good there was the stress of worrying if something might happen.  Having just one nurse out for an extended time would have wrecked our whole thing.  It was a very fragile and stressful thing.  Honestly I knew I was stressed but I didn't actually realize the depth of it until now  If I had not had the three nurses who were such a team we could have never gotten as far as we did nor been able to last as long as we did!  Two of my nurses are basically retiring although they may take a shift here or there for an agency.  One has transitioned to work full time for a friend of mine.  

So keep Selah in your prayers and us also.  Our home seems so empty with Steve, Shad and now Selah gone.  It's weird for us we are used to so many people being here and so much going on all the time.  I plan on being very involved in Selah's home.  We already have some ideas  in the works for some volunteers.  One thing we have always done is fully embraced life where ever we are at....whether it was at the Ronald McDonald House, in therapies,  the kids' private school....whatever it was we joined in and helped out.  This is no different.  We will be a full part of Selah's life now as we have been since the day we met here almost 10 years ago.  

Selah has the best view out of her window.  There's a duck pond that's just beautiful.  

Saturday was so special.  I have not seen Selah so engaged in years.  She was calm and relaxed.  We stayed out for 1.5 hours.  I ended up just sitting on the ground beside her.  Now I've added a little chair to the back of my van for our next outing!  My legs were numb when I tried to get up!  I was a bit worried - thought they might have to send out a nurse for me! 

I know people may be mean about this or say we are abandoning Selah.  One of my closest friends told me not to tell anyone because she was afraid people would be hurtful   But there is nothing wrong with knowing your limitations and wanting to ensure your child is safe.   There are few beds in Florida for young people with traches , most are literally hours from our home.  If or should I say when our nursing plan fell apart we would have had little choice in where she would go.  And she would have had to go into a skilled nursing facility.  Her care is very involved far more than we can safety do.  There is no shame in taking the best care of your children even if you can not personally do that care!  So if you feel inclined to be critical please tell me how you've cared for someone who is as medically complex as Selah for almost a decade in your home.... while taking care of two others who also have complex medical needs....I didn't think so....

We have come to have peace with this decision.... ironically as I was leaving her the first day I got a call from our nursing agency.  Evidently some of the folks we were dealing with who seemed to go out of their way to make our situation harder than it had to be were either fired or they left on their own  The new director was making me all kinds of promises  I told her I'd called the corporate office on numerous occasions to share what was going on and not once was it dealt with nor did things change and we could not live in the limbo that their agency was creating.  We certainly could not trust her word that things would change.  I told her to put her effort into the families they have on their books.  Give them the help they need and treat their good nurses fairly!  

I pray for every family who is facing this dilemma.  As we age and our kids age it is scary!  The past decade has hit both Jon and I hard.  Being in our late 50's is so different than being in our last 40's. Nothing like a few surgeries and a heart attack and open heart surgery to remind you of limitations!  It's a hard part of parenting special needs kids/adults.