Saturday, February 3, 2018

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!

Wednesday, January 17, 2018

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!

Thursday, January 11, 2018

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"! 


Monday, January 1, 2018

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!