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.  

 

A Hilarious Chicken Story

 It's been cold here in Florida.   In fact it's been colder here lately than it has in the past 5 years.  One morning this past week I noticed my little girl Frenchy didn't get out of the coop with her sisters.  She's an old girl a Silkie - probably 10-12 years old.  When I first got her a couple of years ago she would occasionally lay the cutest little brown eggs but I haven't gotten one from her in over a year.  So I opened the hutch and see she was breathing but had her eyes closed.  I kept an eye on her expecting her to be dead every time I walked out to check on her.   But every time she was still breathing but kept her eyes closed.  As it got closer to the evening I decided to bring her in and put her in a box.  Although I figured she was dying of old age just in case she had something else I didn't want to expose the other girls to her plus I hated the thought of her lying dead in the coop.  Then I cleaned the coop and put fresh bedding in there just in case she was sick with something.  

So I brought her in and wrapped her in a blanket and put her in a box in our back hall where it is dark and quiet.  Then I told Shad to go dig a hole for me so I could bury her the next morning.  The next day was going to be cold and rainy and I didn't want to have to dig a hole in the rain.  And there was no way I was going to keep a dead chicken in my house all day.  

So the next morning I went to check on her and when I opened the box....Frenchy started clucking and looked up at me!!!!  Then I gave her some water.  After a bit I thought I'd take her out to see her friends.  They were all in the garage eating cat food, since it was raining.  Frenchy hopped over to them and started eating...LOL  So I let her stay out with them some and then would put her back in the box inside for awhile. She began to peck the box.  Finally I left her out with the girls and they all headed to the coop for the night and Frenchy waddled after them.  She jumped up on the plank and walked in!  That was a few days ago and everything has been fine.  Tonight is going to be in the 20's so I did put her in her box inside the house where she'll stay warm.

Oh and I filled in the grave....didn't need it anymore:)

Prison Puerto Rico and new Pediatrician

We are proud of Shad He was hired as an officer with the Florida Department of Corrections.  He is still in training but this is something he has always been interested in.  He plans to finish his college degree in Criminal Forensics.  

I had the picture below come up on FB memories on the same day 9 years ago...

We were at St Augustine and he was pretending to be sad and stuck in the Old Jail.  Who could think just 9 years later he would be working in a prison.   Wasn't he cute?  

 Sarah is doing great!  I have been so careful with her diet to ensure she gets nothing with lactose and gets gas meds before each meal.  It's so wonderful to see her happy and relaxed again.  Her incisions are almost healed up.  She had a telehealth appointment today with the GI and he was pleased with her.  next week she sees the surgeon.  

Last Sunday Steve & Nichole shared about the mission trip they are taking to Puerto Rico 

She and I also made crafts to sell.  If you would like a wall hanging ($20) or a wooden plaque ($10) just let me know.  

Aren't they cute?

Here are the links if you'd like to give to their missions trip!

Steve Clanton - Puerto Rico, Puerto Rico - Managed Missions

Nichole Navaretta - Puerto Rico, Puerto Rico - Managed Missions

These guys are pretty cute too

Sam was ready to go and eat!

Just lots of good things going on last week Sam had an appointment with his new pediatrician/complex care doctor.  It was Sam’s first 3 hour appointment at the Arnold Palmer Complex Care Clinic in Orlando. I hate to drive interstate so I went the back way which took two hours. I still had plenty of time when we got there about 40 minutes early. However we could not find the clinic because it is a huge huge complex. So I finally found parking and I got Sam out in his wheelchair and we walked all over to find the right building . An intern even helped us out and I was absolutely dying to go to the bathroom because I had drank a whole Diet Coke so I did not pay attention to where we parked. Can I assure you that came back to bite me in the butt. I finally get to the right building into the office get Sam out of his wheelchair then they want to change rooms. I politely said no. One of the problems we were going to address t was Sam‘s constipation. However he decided to show the doctor he was not constipated. So we had to do a whole change as fast as I could because the doctor was wanting to start the appointment… that appointment sure was amazing and we definitely have a plan. She can follow Sam into his 30s/40’s. After we left the office I had absolutely no idea which of the dozen or so parking garage was the one I parked in…. After al that, going through Sam’s entire health history from conception on for 3 hours, walking about 2 miles pushing a 119 pound kid in a wheelchair I was absolutely done. I called security & they helped me find the van. By that point I just got on I-4 … I hate the interstate but it was easier than anything else. For real I had to fight a panic attack - I was able to push through but I literally almost just got a hotel room I NEVER get lost but I did today! Never again am I doing that by myself!

Sam & Sarah are going to a Complex Care Pediatrician/internist who is qualified to deal with all the parts of their lives including specialists & all the paperwork that comes with them! Despite the craziness- I think our new pediatrician is a GEM!

**Back story our wonderful Pediatrician retired & we’ve tried to find a new pediatrician but with all their needs & at their age it’s been beyond difficult. We did find a wonderful one and we talked to her but her office staff and the other doctors did not want to deal with my children and she had to call and tell me that. Can you believe something like that happened? Evidently the office staff got upset with Selah’s nursing agency who required some monthly paperwork. Then the office manager talked to the other doctors and the doctors said they didn’t want to have to care for Our kids if our doctor was out!. I had no idea this happened until the pediatrician called to talk to me. She was very kind and felt terrible but the decision was out of her hands. So basically the non-medical office staff did not like the amount of paperwork my kids generate as every month they get different types of supplies and then Selah with her nursing etc…..

I was beyond beat after that day but I'm also excited because this new doctor was just amazing. I feel that she will be able to guide us in the future with the kids. I've got all his new specialists set up

They will all be with the Arnold Palmer hospital so it'll make things easier. Sarah has her big appointment in March. Then we will set her up with new specialists.

So lots of stuff going on over here!

Steve & Nichols Mission Trip

 Many of you have admired Steve our oldest son for years because of how helpful he is to our family.  He has been such a blessing to us.  We are so excited about all the good things going on in his life.  Currently he is raising money to go on a missions trip to Puerto Rico.  He will be working with a team in the northern part of Puerto Rico.  They have a full schedule and are going to make the 10 days count!  If you would like to give to him you can give Steve's Mission Trip

His sweet girlfriend Nichole is going too!  We are so excited for them to have a chance like this to work together.  If you have ever gone on a mission trip you know how it stretches you to work with others, some you've never met, keep a tight schedule and work long hours.  This will be a great experience as the work with the whole team.  We have grown to love Nichole she is such a great person.  She is a teacher and has so many skills it's crazy!  She knitted the little kids quilts for Christmas and that was Sam's favorite present.  He sits with it every day.  Nichole even got our whole family together to make Christmas ornaments!  Now that's a miracle with my husband and the older boys LOL Nichole has always wanted to go on a mission trip and now thanks to the timing she can over her spring break!  I know she'll be an asset.  We have already seen how she rolls with the flow as she has helped us out over the past month with everything that has gone on with Sarah.  (Sam also had a little run to the ER during this time)  So if you'd like to give to Nichole you can give here Nichole's mission trip

Aren't they cute?

Sarah is feeling good Spinning video

 Sarah is feeling fine most of the time.  Yesterday she got on her spinner and played for awhile.  I couldn't believe it when she indicated she wanted to play.  We were really worried about her going to the bathroom but that has finally kicked in!  Hope you can view this video  

Day 14 and Sarah is home!

Sarah is home!  She was so glad to see Ashley her caregiver!   

Sarah had an emotional  break down today.  She had had it.  Unfortunately she had stomach issues today.  She also started refusing food because she was so tired of medicine.  We were not sure she was going to come home and we did not feel comfortable bringing her home but she was done and it seems the hospital has come to the end of trying to find out what is going on.  

It's frustrating but it's good to be home!

This is her fast asleep on her baby monitor.

 

So to recap everything.....  around August/September we began to realize Sarah was bloating after she ate, usually just her supper meal.  At first we thought she was just eating too much.  It was kind of funny.  But after a few days we started to worry.  I called for a gastrologist appointment, and it took about 5-6 weeks to get in.  During that time, we also noticed Sarah seemed lethargic at times.  The bloating continued.  When we saw the doctor, he suggested using diet elimination.  So, one week I cut out dairy, another gluten and another maltose.   I couldn't tell any difference at all.  I was waiting to get her bloodwork done I had called and asked for some regular CBC blood work to be added and I actually talked to the office on the morning of the day Sarah got sick in December.  

On December 15 I fed Sarah supper, she was happy and responsive.  Then I walked her to her room to change her diaper and she collapsed on her rug and started gagging and retching.  Her lips went white, and she got huge dark shadows under her eyes.  I noticed her belly swelling as I watched her!  I started praying out loud I was terrified her stomach was going to crack open.  No exaggeration!  Never have I seen something like that!  The swelling was from her neck down to her belly.  I called Jon to come home, and he got home and took her to the local ER.  They did an Xray then a CAT scan.  They seemed to show enlarged intestines & some poop. They transferred her to St Joe's in Tampa.  Jon had to come by and pick up some stuff.  It was the first time she has been away from one of us or her caregiver.  She did fine.  The hospitals seemed to concertante on the fact there was stool in her although she had been going to the bathroom regularly.   So, they did a big cleanse and sent her home 4 days later.  For the record I kept saying something was wrong.  No one listened.

When you have a child with special needs people assume a lot of things.  Over and over people assumed she had cerebral palsy and was wheelchair bound and used that to say lack of mobility was hard on the stomach.... so many times, over both hospitalizations I had to correct that!  It was very annoying. 

So, no matter what we said they blamed the swelling on constipation.  So, we were sent home.  From that point on Sarah could not use the bathroom.  I would call in regularly and explain to nurses, on call nurse practitioner, etc... I did everything they told me including enemas.  That was the only way she could go.  In spite of all my messages no doctor called me back.  

Then on New Year's Eve she began really swelling.  I called in the NP on duty told me to give her an enema and follow it up the next day with a total clean out of Magnesium citrate.  Bless her heart she swallowed a whole bottle but did not go to the bathroom only stayed swollen.  We kept calling in and was told not to worry since she had pooped a little.  Finally, I told the woman we were taking her to the ER.  After a 2 hour wait, they saw her and basically admitted her.  Funny thing this time she did not have much poop inside her so they couldn't blame that again.  

They did some testing an endoscopy and colonoscopy and did alot of biopsies.  We were basically told by the doctor that there was nothing wrong and she could go home on day 4 or 5.   That day she swelled up like crazy after eating an early sopper.  At that point we were not going anywhere and told them.  The next day the doctor came in and basically said that Sarah was ok no, and we could go home (her tummy had gone down.  Luckily, they did get an Xray when the swelling was going on.  It showed her tummy was distended with air.  Then the smart doctor decided Sarah was swallowing air because of some of the movements she does with her mouth (she was actually blowing OUT because she was annoyed, we had turned her music off) Then the doctor went on and on and on about it includes the fact that Sarah had pooped the night before and the swelling went down.  She was trying to tie in the "swallowing air" with some relief after going to the bathroom I lost my cool!  I told her that we all swallow saliva (which is what Sarah was doing) and that Sarah did too.  Also, most people go to the bathroom daily but do not swell up before hand and be in agony. I kept pushing for more studies and answers.  By this time, I truly felt some of the doctors (we were dealing with several) thought I was a nut case at best, but I'll be honest I let it roll off my back as I was looking up everything anyone told me to check out.  I'd keep a list after speaking to my special needs mom friends.  In my heart I felt the small intestine was to blame somehow and said it a few times.  

The next day Sarah actually had to be seen by a speech pathologist who said she saw no evidence of Sarah swallowing air while she ate/drank/or sat around.  At that point I asked for a second opinion because I could not trust that doctor.  I told her that I appreciated the fact they were turning over many rocks to try and find out what was going on but just because they had not turned over the right rock, yet they did not need to put the blame on Sarah and not listen to us.  

Sarah then had a upper and lower GI barium swallow.  She drank this stuff, and they took x-rays as it went through her system.  At one point while I was watching the screen, I saw something very odd looking.  Her guts were all on the right side of her body and we couldn't see them anywhere else.  I felt like that was significant.  I thought maybe some of her small intestines had died and that's why we couldn't see them.

We had been told after the CT with contrast that all her organs looked normal.  We had two radiologists to review then (I asked for a 2nd review) So we weren't really concerned that they'd find something.  Our thoughts were more along the lines of a strange virus.  

As I was driving away from the hospital (one of us came home every night usually me to take care of everyone else) a doctor called to tell me they had an answer, and it was treatable.... THEN she told me that Sarah had malrotation of the intestines.... she explained it to me, and I was rather in shock!  Sarah's small intestines were not strung across her body normally but bunched up in the right side of her body! OMG!   Needless to say, I got completely lost going home as I was talking to her.  I was elated to know there was an explanation but sick that she would have to have surgery.  BUT how in the HELL was this missed for 15 years????  When we brought her home one of our first specialists, we went to was gastrologist for the various worms Sarah had.  Xray's were taken.  Then in December a CT with contrast was done......how was the location of her small intestines missed????  One of the first symptoms is air in the stomach....

Then we scheduled surgery with the same doctor who did such a great job on Sam's tumor.  She had a successful surgery and removal of her appendix (which was on the opposite side of her body than where it is usually) She literally was up the next day as if she had not had surgery.   Then one of the biopsies came back that she was lactose intolerant.  Another answer!  The kind of LI she has can start over time she was not necessarily born with it.  In the hospital they had already been treating her as if she was LI but after getting the results, I really watched things like a hawk, and they were sending her stuff that did have some lactose in it.  

Fast forward to yesterday they were ready to send her home and we were so ready to come home...but she had another swelling after eating.  Just so you know she is on gas meds before every meal and an anti-acid.  Again, she found some relief after a bit by going to the bathroom but that is not normal behavior & the surgery cannot be blamed because she was doing that before over the past month.  

Today she had bottomed out.  She literally was shaking from stress and not wanting to eat or take much by mouth.  We were concerned because now she's done the same thing despite the surgery and being off milk products.  After some tense talks, we decided to go home and plan on taking her to another hospital should she continue to have problems....

We also have another big issue.... last year without my permission (LOL) the most wonderful pediatrician retired We had been with his practice since Steve was a baby.  We loved him and had grown close to him over the years.  I had his home, cell and back-office phone number He walked with us through some terrible times when Sam was young.  He was the one we went to only 12 hours after landing in Florida from Ukraine.  He gave the girls his full morning to check them out.  He worked with us so Sarah would not have to be hospitalized after coming home in such bad shape.  He walked with us through Selah's accident and called us and check on us.  He helped our family so much!  

So needless to say, there is no replacing such a doctor.  But I tried...after meeting with one doctor we tried another one.  We knew it wouldn't be the same, but we had to connect somehow.  So, we found a good doctor.  She has a good heart.  I brought each of the three children in one week after another.  Finally at the appointment of the last child we had a heart-to-heart talk and she asked me some questions about my beliefs.  She was so positive and shared with me some personal situations.  

Well, I was elated!  Until I got a call from her office manager asking me to find another doctor for my kids because they were too involved!  I kid you not!  Evidently our nursing agency had had a fight (I had no knowledge of this) with the doctor's office because some forms were not in.  So, the STAFF did not want to work with our family!  Somehow the other doctors in the practice were informed and agreed they did not want to be responsible for our kids should our doctor be out!  I kid you not!  I was actually cleaning the church and I sat in my car and wept.  The weight of my responsibilities weighed so heavy on me without having a dependable pediatrician.  Without knowing all of this I had already been considering a complex care peds office based out of Arnold Palmer in Orlando because they will work with their SN patients far into their adulthood.  I did have appointments for the kids, but the appointments were months away.  That sweet doctor called me and gave me her cell number and told me to call her if her office couldn't handle things and she would see it got done.  I thought that was so sweet it made me cry.  But in spite of that, I do not feel comfortable with how things are.  We had to miss Sam's appointment and it got rescheduled for next week which was originally Sarah's space.  She has been rescheduled for March but I'm hoping they will figure out a time sooner than that!  That office is not taking any new patients after us for a while!  

So, we have some serious stressful things going on.  We also have things we are working on for Selah and a very close friend is fighting aggressive cancer.  Both of our older boys have major changes happening in their jobs and life-it's all good things but it's still stressful.  The biggest stress for me is that in his new job our oldest has to do a lot of traveling...on a small plane!  if you know me you know I hate small planes after an incident that happened to us years ago.  And our church is struggling with attendance since Covid although the members are so very faithful in their giving as we support many missionaries.  But it's discouraging.  

As far as Sarah goes, we are on a wait and see basis.  We are feeding her small amounts but more often and I was able to get her to take some formula today Katyfarm which should meet her nutrimental needs while she is eating less.  One doctor said for her to be on a liquid diet, then advance as we see fit.  Another says to feed her regular puree sans any milk products

I did go and buy her all the stuff for a lactose free diet.  Normally I keep her a freezer full (yes she has her own freezer) of her meals but I gave it all to the animals since some were milk based.  I just wanted to start over and make no mistake in what we feed her.  I've already figured out how to modify most of our meals so she can eat them.  I said I feel like I have a newborn again LOL 

If she swells up, we are taking her to Arnold Palmer.  There is something else going on with her-everyone knows it but some won't admit it.  They just assume she had problems before the fall.  She did not!  Of course, when she first came home, she had several bugs and had mostly diarrhea for a few weeks but once that got cleared up, she never had a tummy issue.  No she doesn't chew normally but that is more to do with how she was fed in the orphanage.  We had already taken her for 2 swallow studies She does not understand how to chew although we have been able to increase the texture of her food to a very coarse puree and she learned to drink with a straw (no that's not the cause of her air) She went to the bathroom regularly until she was in the hospital in December.  Sarah has only had a couple of ear infections and covid in 2020 (she had the monoclonal antibody treatment and recovered during the treatment-first child in Florida to get it.  Lakeland Ledger wrote up a piece about her) She has always been so healthy once we dealt with the various issues, she had because of the neglect of the orphanage staff.  I just do not think the doctors believed that no matter how much I told them and that irritated the hell out of me They saw her as a very special needs handicapped child who had so many issues.  We kept telling them how she walks, rides a horse, swings, plays with toys etc.... So, they see gastric problems as just par for the course.  It's beyond frustrating!!!

Maybe now she is home things will even out.  I hope so but I don't feel confident about it.  So, pray for Sarah that either God touches her little body, or we find the complete answer to this issue. Please include our family on your prayer list especially our oldest son as he will be flying next week on several trips!  Also, Shad starts the law enforcement academy -no doubt he will do well and succeed but it is definitely a very adult step forward for him that may be the beginning of his life's work.  There is also some things we are looking into for Selah so just alot going on...for once (knock on wood) things ae pretty good with Sam although as usual this time of year he has constipation issues.  It is the absolute craziest thing ever but every "winter" he has problems.  We are giving him Ducolax and MAKING him walk around the property every day 5x!  It equals out to about 2000 steps he walks very grudgingly and angry.  It's hard not to laugh.  It's the only time he walks fast.  It's been challenging to keep him on this exercise plan, but we've made it almost every day.  Sam would be happy to be a complete invalid.  He wants to sit all day, so it is a chore to keep him moving.  He's always in a good mood when he comes back inside, and he hits "his chair" btw that chair was supposed to be mine.....it's not:)

Life is busy busier than ever right now and so many changes -I do not like change even good chamge  I long for the days when every day was much like the other one.  There was a time before the girls' adoption from about 2007-20011 that my life was predictable except for some occasional medical drama from Sam.  but even Sam was calmer during that time frame- the worst was behind us.  Steve and Shad went to a little private school, so Jon took them to school, I had the whole day home with Sam till it was time to pick the boys up.  Then we'd come home I'd get supper ready, and we'd watch tv.  We didn't have cable or good internet, so we bought sets of old t v shows like Andy Griffin or Gilligan's Island.   It was the "Golden Years" for me Of course the very happiest days of my life were when we got the girls home before the accident.  The Summer of 2012 was the happiest I have ever been in my entire life.  Sometimes I get upset and angry about the things that have happen but at least I can say to myself "I have had true happiness and contentment.  There're nights I can remember when the kids were all in bed in our little house and maybe it would be raining but I just felt complete contentment.  It was good-I'm lucky to have had that time.  I love this time of my life (Not the medical drama) but it's certainly different.  It's more exciting but heck who needs excitement.  LOL 

Anyhow I wrote all this info out to help me remember but also to share with y'all.  If you have any ideas of what Sarah could be dealing with, please email me at theclanton5@aol.com or leave a comment.  There has to be an answer!  Thank you all!

Day 14 Hospital stay for Sarah

QUICK UPDATE

 Sarah had her surgery on Tuesday to fix the malrotation of her small intestine and remove her appendix.  Everything went great.  She was progressing nicely until yesterday.  Actually we thought she might come home but she began to reject most food offered to her.  Then she swelled up not as bad as before but it was painful for her and upsetting to us.  She also had hiccups which we can't remember her ever hiccupping begore.  She did gag some too.  She was given anti nausea meds and put back on a liquid diet.  She has been going to the bathroom regularly..  We did find she was lactose intolerant from one of the biopsies that were done.  

We really do not know what to think!

All this started in the fall as far as we can remember.  The swelling up after eating is what drove me to take her to the gastrologist in the first place.  Obviously her small intestines issue was something she was born with.  The lactose intolerance was not something we had noticed before.  I asked and was told she could have developed it later in life.   So we got the surgery and she has been on a lactose free diet for most of her hospital stay yet we are still having the same issues.

We are worried and tired.  Please pray for wisdom for our doctors.  Pray for Sarah I hate to see her sick!  She has always been so healthy.  

She has had all the major GI tests.  If you have any ideas please feel free to email me directly as i have not been checking the blog much.  theclanton5@aol.com  Thank you for the prayers!