All About Sam!

Well our story continues!  So after my last blog, nothing got any better.  A few days later Sam began having explosive diarrhea and the next day he was  throwing up.  Now I absolutely HATE throw up.  I can deal with anything else but not throw up.  More often than not, I join the child and throw up myself.  Well this throw up deserved a very special place in hell.  It looked and smelled like cat food!  In fact the only way we knew it had happened was our cat began crying and crying in Sam's room!  It was so odd for the cat to go in there that I went to check and walked in on a scene I will not easily forget....  I think the cat was traumatized also!   Dear Jesus.... I put Vick's chest rub up my nose and covered my face with a mask in order to clean it up!

We took Sam to the ER where we were met with the most odious little doctor man.  He absolutely took nothing serious that Sam had been going through nor any of his special needs.  All he did was to give Sam some meds for nausea and try and send us home without even wanting to wait and see if he could tolerate it.  And the doctor kept calling me 'Mama" in an false Southern way....  Rather than go to jail at that point we took Sam home....and of course he threw up 3x before we got in the door.  I called back to the ER and all they said was give him more anti nausea meds.  It did work and about 4 am we all got to sleep.  (And yes you know I registered a complaint against this doctor!)

 We laid low a couple more days.  Then we began having another issue NO poop....for a week and a half even though he was eating normally.  Again we called our doctor and began trying everything he could tell us to do.  Time kept passing but NO poop!  Every so often I could get a little undigested food out with the use of an enema.  Our pediatrician   and I have a great relationship and I appreciate him and his nurses-I called them so many times and they were so gracious to me.  I followed his advice to the letter.

Our wonderful respite care worker has a Mexican grandma who has helped people out with massage.  She came over and massaged Sam's back in a way that helps his digestive system  (She did it for Selah too)  We also tried a remedy their family has used before- Papayas!  Sam ate a half of one but still no poop!

Then I took him in to see our doctor and I just broke down bawling!  I think I freaked him out.  He's been with us through some rough times and I'm pretty sure he has never seen me cry!  Believe me the floodgates were opened....I told him all the strange little things that were going on with Sam.  When you parent a child with special needs who is non verbal, you really learn to read your child and there were so many things out of the ordinary with Sam.  I told him I wasn't trying to be a drama queen but I felt like Sam was dying from something and no one could tell us why all these strange things were happening.  He sent us for x-rays and labs.  He took me seriously.  Of course the x-ray showed  a very full gastro system.  We tried some stronger things with him -stuff that would have adults running to the bathroom- but to absolutely no avail.  By this point he was sleeping with me and would just groan in his sleep which really freaked me out!

So we went back to the ER, this time we had a wonderful doctor who listened, spoke with our pediatrician and did more x-rays.  At that point there was talk of surgery for a blockage.  He was transferred to Orlando.  While we were waiting he did pass some stuff but it was more undigested food and water.

Sam absolutely was wonderful through all this and so cooperative it was unbelievable.  He LOVED the ambulance ride to Orlando.  He kept laughing with the bumps.

The next day they ruled out surgery and did a full ultasound of all his organs in his digestive system due to a rare chromosomal deletion to make sure there was no tumors.  Thankfully that was clear.  The idea was just to give him a different med and give it some time.  Well as we were being discharged he actually did a normal poop!  At that time it had been almost 3 weeks since there was anything normal.  The undigested food was really worrying me.

Since then he is finally getting back on track.  He is taking a liquid laxative and stool softener.  Now things are a little too good LOL  The challenge will be getting his system to work on its' own!

Sam has always eaten a good diet.  He doesn't have a sweet tooth although he will eat some fruit but hates any type of cake or ice cream.  He literally will gag on sweet things.  It's really amazing.  He loves vegetables and  rarely eats bread.  He will eat any type of bean or pea.  The doctors feel it was not his diet but an after affect of the flu.

Again I will tell you I am so glad he had the flu shot last fall!!!!   I believe he would have been so much sicker if he had not had the shot.  He has had a flu shot every year of his life and this is the first time he or any of us have gotten the flu after having the shot.  This year's flu was rough!  So 6 weeks later we are cautiously optimist that we are done with this!  I can not believe all the strange things that have gone along with this.



His room AFTER I had cleaned up everything!

Opening a birthday present

Birthday boy put himself to sleep on the swing

This was the day after he was born... I held him for the first time and he opened his little eyes.  Up to that point no one had noticed our baby was blind.  He showed me.  This picture used to break my heart but now I can say I'm glad I was the first one to notice.

14 years later getting an x-ray

the famous ambulance ride that brought him so much joy:)

Finally he got to eat!  He was so happy

We were able to take him on the roof top garden one day.  It was very nice out

This toy......Sam loved it I MUST find it!

This girl was waiting on me!  She missed MAMA!  she got right in my lap!

Notice the hand....it's wrapped around my arm tightly

We sat on the porch for hours on the swing, this was my view.

Sam outside loves a polar pop!

I love this-took it last night.  He crosses his leg and swings his foot like a grownup man:)

Jon and I both were able to be with Sam in the hospital because his respite care worker stayed with Sarah several times.  And our oldest son gave us his whole long weekend to help out.  Thankfully we got home on Sunday and were able to have some time together before he had to go back on Monday.  Both of those young people are such a blessing to us!!!


I feel like Sam is on the mend.  But I still feel a little worry in my heart for him.  As a younger child he was sick so often and it would progress like this, something would happen and it would just continue on and on with no real diagnosis.  It was an awful way to live.  Until he was about 7 years old I kept a hospital suitcase packed for both of us.

Based on what has happened, we have made the decision to withdraw Sam and Sarah from school.  I'm just not ready to take a chance on his health again.  His immune system has never been good but we've kept him from being sick by keeping him home.  These past week have been very scary.  With him, you never know what could happen and it is just not worth the risk.

So I have Sam and Sarah set up for ABA therapy (applied behavior)  It will be done at home.  We are also setting up for them to do horse therapy at a local farm.  We hope to get both started within the next week or so.

WBC and Sam!

Well we have had a time over here!

Sam and Sarah started school.  Sam did pretty good from the start.  Sarah had a harder time on the first day but then was able to handle it.  They only go for 4 hours a day so it hasn't been too stressful for them.  For ME? Different story.  It was much easier with them at home with me.  But I'm willing to do it if they are learning new skills.  Right now they are working on getting used to the class as we are applying for therapies etc.   I think it will take awhile to see how school does for them.

Then last weekend I noticed Sam was running a fever, we took him to our doctor and he tested positive for the flu.  He had had the flu shot last fall, as all the kids do yearly.  Thankfully he only had two days of fever and that was it.  But he seemed "off" I knew in my gut something was wrong and as my husband and I discussed it we both remembered little things, that put all together worried us.  So last Wednesday I took Sam to our practice's lab for blood work.  There's a whole story behind that....

First let me say I love our pediatrician dearly and trust him totally.  However the practice that he is in is huge & growing.  It's all kinds of doctors and specialties for all ages.  Of course with tremendous growth it is harder and harder to deal directly with our doctor.  It's not his fault it's just how it's all set up.  So with such illnesses going on, I could not talk to a real live person on Wednesday so I just decided to show up to the lab.  (BTW this is all in another town)   I was pretty sure that his doctor had ordered basic labs on him at his last check up before Christmas that I hadn't gotten done yet.    My gut was literally SHOUTING  at me to get to the doctor so we went.  And of course there were no labs ordered but the receptionist called the doctor and bless his heart, he ordered me all kinds of labs.  I want to think he trusts my gut that was telling me something was wrong.   He probably just thinks I'm a crazy mama and it's better to humor me lol.

Unfortunately I was right.  We got a phone call at 9 pm that night.  He told us Sam's White Blood Count (WBC) was extremely low (it should have been high)  and his ANC was life threatening low.  The ANC is what fights infection.  His was at a severe neutropenia level.  I'd only heard of this in patients that had cancer/chemo !  He said Sam needed to stay out of school.  He felt like it would resolve itself in a few days. 

We went back on Friday for more blood work and unfortunately it had not really changed, maybe even a little worse!  We had thought he had to be better as he is acting mostly normal.  Actually we met our oldest son for lunch and was getting Sam a haircut when the doctor called and told us to take him home and stay home!  We went home and I gave him a bath.  Now he is not allowed out at all!  We are keeping Sarah home too.  At first we did because we were concerned that she might have gotten the flu from Sam and would pass it on but no one got it from him.  Now we are concerned she might catch anything and give it to Sam.  I'm also staying home from this point on so I can take care of him and not pass anything on to him.  The biggest concern is that he might catch something while his body is unable to fight it and it could easily be life threatening!  We will be going back every few days for labs until they are normal again.  He will be home bound until this works out.


If you want to read about this copy and paste this link.
http://www.marrowforums.org/tools/anc.html


This is just an odd thing, I'm so glad that he got the flu shot because it obviously helped him not to be sicker than he was.  Please don't ever let people tell you flu shots are useless!




Here are some pictures from the last weeks


Sarah loves her dada!

Sam sleeping on the swing

Selah almost asleep one night.  I thought she looked so sweet

Sarah swinging

 Steve and Jon
we always think it's so ironic when we eat at this Olive Garden, it's where we had our first date....
LOL I couldn't have imagined then  that one day 28 years later I'd be there with my kids!

I took this picture while on a walk!  I think it's one of the nicest pictures I've ever taken!

School Days

Well Steve is back to college-it's his next to last semester as it looks like he will be graduating next December.  He has worked hard and done really good.  It's hard to believe he is almost finished with college-dang he JUST started it seems like!

Shad is back to homeschooling.  We have started an on line program called Acellus.  He had finished the other curriculum we used through 8th grade although he'd normally just be starting 8th grade this school year.  When he tested for the new curriculum he was placed in 9th grade in English, History and Biology/Science. He did test at 8th grade in Math but that's ok-that's his one struggle.  Shad will be picking out an elective also.  I think he is going to take Spanish!  Hola!

Well yesterday Sam and Sarah started school for the first time ever!  We had felt for some time that Sam was ready for school but we absolutely were not going to send him to public school.  We've had  many bad experiences just with the homebound aspect of the public school system in our county  that there was no way we'd send them off to the public school!  We had looked at a small private school that was at our son's college that took kids with disabilities but that did not work out.  I'm not sure I could have handled the drive daily anyhow.

When I'm faced with a need, I look into things then I set back and let God take over.  I do NOT try and "make things happen"   I learned THAT lesson a few years back LOL!!!   So for the past 1-2 years I kept homeshooling and looking around.  Florida has many different ways for parents to have choice in where their kids go to school.  We applied for the Gardiner Scholarship that is a tax credit based scholarship.  There is also Step Up For Students and McKay.  I think there are a couple more -one that is called AAA but I don't know much about it.  I LOVE school choice as I feel parents should have the ability to place their children in whatever setting they feel is the best for their child. 

So last fall a friend of mine mentioned a new private school in our area that works with kids with varying degrees of needs.  I contacted them and we began talking.  Sam and Sarah have more needs overall than any of their other children but they were willing to give it a try.  We worked out all the bugs, made sure we had someone to work directly with them and made sure the class was ready for them.  Finally everything came together and they started yesterday.  They are doing a shorter day of school for now to help them orient themselves to it.  One great thing is it is only minutes from our house!!!  I'd looked at schools in three other cities and then found one down the road!  That just makes me happy.  I feel like God leads even in the small stuff.

So yesterday.....
I was very nervous for Sarah and she did struggle some but Sam had a blast!!!




Our supplies for the week

Sarah and Sam with Ms Ashley their respite care worker.

Facing the school!

Sarah in class

Sam playing

We love this picture of Sam in class

They get released earlier

Home at last with a treat

Sarah was very upset by the end of the day and couldn't even stand for me to touch her.  When we got home, it was beautiful outside so I thought if she got on her swing for awhile she'd calm down and she did.

Until the past year or so, Sam and Sarah have never had anyone other than family care for them except very limited amounts of time.  It was rare for us to leave them with anyone.  Then we began getting respite care and we had Ms Ashley in the home some.  That was a transition for all of us but very nice for us.  I began to go out more with my friends during the day and I could go shopping on my own!  Woohoo!  The kids adjusted to her quickly.

School is the biggest transition yet especially for Sarah.  She is very attached to me and she likes the security and safely of being home. She does not like loud noises.   If she can handle school I'll be happy but if she can't then it'll be ok too.  She has been through alot in her little life and I'm not one to want to add stress to her.  She made it through yesterday but was already stressed out this morning.  I can read her body language, it's pretty easy, when she is upset, she balls up her fist...both hands were balled up this morning!  Then she wouldn't walk holding hands with Ms Ashley and had to be carried in but she didn't cry.  She loves her Ms Ashley and we are so happy that she can go to school with the kids.  That helps alot because she has worked with them and has learned how to read them.  When a child is non verbal, the caregivers have to learn the child's language.  So I "speak" Sarah and Sam.  I can understand what they are wanting/needing.  My biggest fear is Sarah will think she is back at the orphanage....that might sound crazy but I don't want her to be afraid or think we've left her.  Last night I held her for a long time so she would know I was still there and she was home and safe.

With Sam we are really working on him wearing his glasses.  They help him see better and they protect his eyes.  Protecting his eye is very very important!  With Sarah we are working on getting her to use the walker again.  I have to admit it is easier to carry her or to lead her by the hands than to walk her with the walker.  But it's better for her to use the walker.  Academically we are working on them getting used to the classroom setting for now.  We are going to be evaluating the situation daily.

So now I only have Selah at home with her nurses and Shad home with me.  I feel like an empty nester!

12 years at Grace Church

Life has been good around here. We are still in holiday mode.  Steve is home from college until this weekend.  Sam and Sarah will be starting school next week as will Shad. 

Last Sunday we celebrated Jon's 12th year as pastor of Grace Church!  In those 12 years we've basically started the church over, renovated all three buildings on the property (debt free)  and started an amazing Missions/Orphan Care program.  In 2016 our church gave about $30,000 to missions/orphans!  The year before we came to the church the whole church income was only about $5,000. Our church is not large but the folks are so very faithful to give towards missions/orphan care.  It amazes me!  With that said. this year we are making a very concentrated effort to reach our community.  some folks think it is old fashioned to go "door to door"  but I've felt very strongly about it.  Many times when I'm walking in my neighborhood I think about reaching each home for Christ.  So this year I've spearheaded an evangelism outreach.  Just this week alone the boys and I have reached over 150 families!  I'm so excited.  At some homes we just leave a little packet but at some homes we get into conversations with our neighbors.  I'm loving it! 

Also we celebrated Shad's 12 year "gotcha" day!  So on Jon's first day as pastor, I was picking up Shad in china.  Technically I got him right after the Sunday night service ended (13 hours difference)  That was an exciting day for our family!

When I was handed Shad

Two weeks later he met his dad at Tampa International Airport

don't laugh the little bag is perfect.  Sometimes i have to tape it to gates

This was our cache of invitations :)  Put together with love

You know I read a statistic once about how much more likely a person was to attend church if someone personally asked him to do so.  I want to personally ask some folks!

It's not all about church attendance I totally understand but we know we all need each other.  And the bible seems quite clear that we should not neglect the assembling of ourselves together.....   I know some would argue that they can hang out with Christians anytime anywhere and it is the same as church but if you realize what the bible indicates you would know it's not the same.  The New Testament church was only following in the footsteps of the Old Testament saints who met weekly in the synagogue to honor God....not to hang out with each other although fellowship is a part of what we all crave. 

I believe in being a part of a church and attending regularly and that's not because I'm a pastor's wife.  I don't care where you go....just go to a Bible believing church!!! 

I also totally believe in paying tithes....and that is not because I'm a pastor's wife but because I've seen the transformation in my life when I began to freely give.  The old saying "you can't out give God is very true"! 

It's a New Year!

Last night we had a good time just sitting around the fire pit.  It's very relaxing. We had some friends over and did hot dogs and smore's. 

This morning Jon and I got up and went for a 5 mile hike in the woods.  It was absolutely perfect, cool, misty rain.... 

We like to go back in far enough that you can't hear anything but nature.  This morning we heard some animals in the distance but we stopped at a trail turn.  We heard a lot of rustling in the palmetto underbrush.  I knew the sound and I was right....a bunch of little wild pigs!  I got a video of the last one as he ran out but couldn't post it on here for some reason if you want to see it go to Facebook to
My Real Life By Yvonne and watch it!  While you are there LIKE my page and you'll see occasional videos that don't make it on the blog.

Once I got home it was time to cook the traditional southern New Year's Day dinner

On the left is cornbread=gold
middle is collard greens =Green bills
right is black eyed peas = coins!

LOL now we will be rich in 2018!

So all of Florida is hoping for a little snow this week.  It's been a long time since we had any real amount of snow that was 1977 I think!   Today is a gloomy rainy day but I love days like today.  I love rainy weather.  Tonight I'm sharing at the local Lion's Club and am looking forward to meeting some new people.  

Have a great day and stay warm and safe!