Monday, February 24, 2014

Monday Mornings




Love my happy boy, Shad!  This was taken at his Valentine's Dance.  He met up with a girl there but it was really like glorified recess.  The kids danced to Christian music and played games and won prizes.  I came for the last few minutes and it was a loud happy party!
 



Selah continues to do good.  OF COURSE her Tobi med didn't come today....an hour on the phone tracking it down....it will be here by noon tomorrow....and people wonder WHY I have an anger issue??   She had PT today but we're going a little gently on her.  She still is not up to her regular self but she is ok.  Our weekday nurse saw the new facial expression and really feels Selah is trying to smile!!!   He was almost crying when he saw it, he's prayed for her to be able to smile at us:)  

The kids have been busy with therapy and teachers today.  Mondays are big days for us. 

I've tried to get going but even after a LARGE coffee and TWO doughnuts, I'm dragging trying to do paperwork.  I swear I do more paperwork NOW than when I worked full time.  So overwhelming at times.  Everything takes so many steps to finish the whole thing.  Makes me want to go take a nap!

Tomorrow is a crazy busy day for us.  I scheduled Jon to see GI (he has some issues with his throat) and Cardiology. I figure I've had to see all these doctors, now it is his turn so we will stay healthy!  Sarah has an appointment with dermatology in Tampa.  She came home with a form of scabies (non contagious) and had to be aggressively treated.  Every great once in a while she'll have a small outbreak that we can treat with ointment.  So she sees dermatology once a year.  Plus we have PT in the morning.  Long day!  And Tuesdays are my day to go out to lunch with my friend:)

On Thursday I have someone coming to redo our whole sound system in the church along with the computers and he is going to look at my computer and try and figure out the issue with my blog!  Yeah maybe I'll soon be able to load up pictures again.    I'll be so glad to have all this done.  Our system was like just put together all kinds of ways with cords  hanging out.   We may have to buy some equipment to update the system but it will be nice to have it working and understandable. 

Well I hope you've had a more productive Monday than I have, about the only thing I've gotten done is cleaning out junk pipework, throwing away and shredding.   At least the pile is smaller, thanks to that:)  But now it's time to go and cook supper.  Chicken & Rice casserole with mashed potatoes and baked beans.  Easy peesy...and pretty healthy.  Have a great night!





Sunday, February 23, 2014

New Day!

What a day for the country of Ukraine.....things are happening fast and it's very fluid right now.   This morning's headline for AOL was this article http://www.cnn.com/2014/02/23/world/europe/ukraine-protests/index.html?hpt=hp_t2&icid=maing-grid7%7Cmaing8%7Cdl1%7Csec1_lnk2%26pLid%3D446443   It starts out saying "it is a new day in Ukraine"   LOVE that....it is a NEW day.  We just pray blessings on the country of Ukraine and pray that the country will go towards more democracy, freedom and that the Gospel of Christ will have more freedom to be shared AND that orphans will have better care!

Selah is continuing to do ok.  She is still not back to 100% but we are thankful that she is handling this illness WITHOUT having to go in the hospital.  This is the sickest she has ever been and yet remained at home.  We are thrilled that she is being able to recover at home and not in the hospital.  This episode reminds us of how important it is to have nursing for her.  There is no way we'd be comfortable dealing with her like this at home WITHOUT a nurse.  We have been in contact with both her pediatrician and her pulmonologist and followed their guidelines.  We were given  parameters to be able to keep her home, and thankfully she stayed within those parameters.   Thanks for all your thoughts and prayers!

Despite not feeling good Selah is doing something NEW-completely NEW!  Just yesterday she started bringing her top lip up in a way she never has before.  It looks like she could almost be smiling or maybe showing she is upset like a sneer.  I only saw her move the left side but our nurses have seen her move the right side also.  We didn't think those muscles worked but they seem to.  When she was up in the stander today, she used  this new movement and we could tell it was absolutely a purposeful movement.  I'm really excited, every little thing matters!!!!

Mr Sam has been a mess lately!  Just within the last week he had acted cranky and out of sorts.  And of a sudden, he has become a real toddler:)  He is into everything.  Yesterday he got a box of cereal, took it to his room and emptied it all over the floor!  In the past week, he has gone from just walking to his swing outside to running around the whole yard, getting into the garden, finding a ball and climbing down the slide without help.  He also found the dog's water dish!   We are loving it but at the same time, are quite astonished.  He has always been so cautious, not being able to see very good but now it's like "Katie bar the door" LOL  (old southern expression that means to LOOK OUT here come trouble) 

This morning before church we found him UNDER the trampoline in his room trying to get to some toys in a box. He has never done something like that!   We took pictures, that won't load on this crazy blog.  But we have photo evidence!  We had a guest speaker today so Jon sat with the family.  Sam could not contain himself and wanted to play with daddy.  I took him out, and he protested LOL 

It's like he has had this huge leap in his reasoning abilities.  The way Sam progresses seems to be like this but he has never ever had this big of leap before.  It's really something for us to watch.  We also know that we need to be extra careful with him right now as we were thinking he might figure out how to open doors by himself!  Glad we have an alarm system!

So our little ones are learning new skills.  Sarah is continuing to walk everywhere using her walker.  She wore a new summer outfit to church today and new sandals, she was so cute but I think the sandals were a bit harder for her to walk in.  She did it with a smile though:)


Big news.....Shelly Burman is HOME from Ukraine after being there since December 8th....she made it through many hardships, many things changed and she did not get the children she originally set out for BUT she rescued FOUR gorgeous little boys and made it through a near civil war.....I think she should write a book!!!!  But she is safe at home tonight with her hubby and all her children.  Pictures will be forthcoming I'm sure:)  She is a real trouper!  

Hope you all had a great weekend and a good week coming up!

Saturday, February 22, 2014

Our fighting girl

Selah is holding her own.   What a little fighter!  The antibodic seems to be helping.  Her secretions are down, no fever today and no throwing up!   We are still being careful and have stopped the fish oil till she is back to normal.  We also are not giving her the formula tonight either, keeping her on Pedialyte.  In fact we kept it going on all on a slow drip in her gtube to make sure she stayed hydrated without using the juices like we usually do during the day.  Trying to keep things as easy for her as possible. 

Actually I'm thrilled that she is handling this illness as well as she is!  She is our tough little Ukrainian!!!!  I think this shows how healthy she is despite all she has been through. 

Speaking of Ukraine.....what a day for that country!  The president has stepped down, the former president has been released from prison.....  We hope and pray that freedom is finally coming to that wonderful country that has our hearts!

We got three more of our Square Foot Gardens filled today.  One with collards, one with squash and one with all kinds of peppers.  I have 4 more to fill and 3 to redo.  SFG are made of Untreated wood so they don't last forever.  Basically we'll just shovel out the remaining sand, put up the new sides and cover the bottom with cardboard boxes and newspaper and fill back up with compost. 

The boys worked hard after I had to go back inside and mulched & weeded around the house.  I then potted some flowers to hang.  Things are looking like spring time!  For their reward, they wanted to go to the movies....I only wanted to fall out on the couch!  Love having an older one who can take them to the movies for me! 

Tonight I switched back my closets . I know I live in Florida BUT I have this  thing about closets!    Summery and winter clothes can not be together LOL!  So since my closet now only has spring/summer clothes  I'm sure we will have SNOW LOL!    It was probably in  the mid 80's today. When I finished working outside, I took a COLD shower and was still HOT! 

But it is bathing suit and shorts weather down here....sorry to all my friends who live up north but just remember when you are having a nice warm summer, we'll be dripping with sweat down here in Florida!   I love Florida in spite of the heat & humidity!  It's what I'm used to:)  Personally I like as few clothes or shoes on as possible so that works good down here!  (NO I'm not a nudist- just love tshirts and shorts!) 

I have a collection of flip flops:)   No fancy shoes for me but I do have some really nice flip flops, some would be considered dress shoes:)  That's how we roll down here!!!!    Last year I found black flip flops with rhinestones and another pair with jewels on them.  I love them!

 Hope you all have a great weekend!  Please keep praying for Selah.  I'm thankful she has done as well as she has but she always needs prayers.  I don't understand everything about prayer but I know God hears Selah's name often.....





 

Friday, February 21, 2014

Our Sick Girl

Selah had a rough night, had to be suctioned often, her blood pressure was up enough to need a blood pressure med she has not taken in months!  She also had a big poop....The nurse gave her some valium also in the early morning.  Then she seemed to be ok till after she got her morning fish oil.  She threw most of it up.  Then a little later she threw up some water the nurse had given her.  She also started running a low grade temp.  She managed to keep the Tylenol down and has kept all her meds down since about noon. WHEW! 

I called both her pediatrician and her pulmonologist to see if we should take her in but we all were in agreement that we'd keep her home IF she could hold down her meds.  We don't want to expose her to something in the hospital if we can help it. 

Tonight we are just giving her Pedialyte   in her gtube feeds rather than her formula, in hopes of not upsetting her tummy!  So far so good!

We all think she is having a bit of a surge of her trachea infection.  She is colonized and that is why she gets Tobi (inhaled antibodic- 28 days on 28 days off)  She is supposed to start it on Monday....BUT this is the drug we fight MONTHLY with our insurance company.  It's supposed to be delivered on Monday but my bet is it won't come.  Our insurance requires it as a "specialty" drug to come through their mail order company.  WHAT a freaking pain! If we could just get it, we could start her a couple of days early and clear this up.  As it is, I can only hope she can make it through the weekend without having to go to the hospital.  I called the on call pulmonologist tonight.  She was able to call in a med we can use until we get the Tobi on Monday.  Hopefully that will help. 

Please keep Selah in your prayers.  She doesn't seem to be too upset or uncomfortable thank goodness but we are not feeling too good about all that is going on with her.  Times like this make me very glad we have full time nursing! 

This picture is from Thursday during her time with her teacher. 

 
she was really paying attention to everything.
 
Thanks for your prayers!!!!!!
 
 

Thursday, February 20, 2014

Proverbs 31 NOT

This was my FB post yesterday:

Planted the garden FIVE beds cucumbers, tomatoes, lettuce, egg plant, carrots, and herbs cooked a huge meal.....AND all the clothes in the house are clean at this moment in time..... (cooked spinach shells, cheese tortellini, and spaghetti and made a big salad we'll have good leftovers for a couple of days. )

Boy I sound like the perfect Proverbs 31 woman don't I?  I've included some pictures but it doesn't look like they are showing up. 

I had it all going on....the garden was done, the weeding was done, the mulching at the church was done (thanks to Steve and his friend Gabe) I had made a huge meal since I had agreed to take Steve to a youth event that night.  I had everything done for Jon so when he got home, he wouldn't have much to do but put the little ones to bed....  I cleaned the kitchen, not a dirty dish in sight.....  The laundry bins were EMPTY, everything was put up....went back outside to see the finished results...and when I came in.....there was a call on my cell phone from Shad's school....it came in at 3:48 pm......you see, I was supposed to pick up Shad at 2:30pm.....the same time I've been picking up kids from school for the last 8 years.....

I frantically tried to call the school back, but it went to voice mail.  I tried calling a close friend who works there as I ran around trying to find my van keys....Totally freaking out......

Luckily Steve's friend's mom was here and she ran me up to get him.  Shad thought it was funny, he'd been hanging out with some kids that were still at the school and wasn't upset at all. My friend said I am now "THAT " mother......I can't imagine what the teacher and others were thinking yesterday when they couldn't' get ahold of any of us.....

It's a funny story....I had everything RIGHT, except for forgetting a kid!!!!!!


We are all still laughing about it.  But doesn't that show how NOT perfect we are?  We might have it all together in one area then be totally off in another one.  I plead GUILTY!  I think this will be a "classic" family story. 

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Selah is really doing some new things, they are subtle things but everyone is seeing them.  She sat in her pillow chair with minimum back/shoulder support and held her head up for over 10 minutes Tuesday night.  She had nothing around her neck helping to hold herself up.  Today she seems very responsive to her teacher who is quite amazed at some of her responses and it seems she is following/tracking more with her eyes and by moving her head.  I took some good pictures that will not load on here.

Don't know what is going on with my blog not accepting pictures.  My computer is fine, it's just the blog. 

As you can imagine our hearts and attention are on Ukraine.  Please pray for this country that it will experience freedom. 














Tuesday, February 18, 2014

Please pray for Ukraine

Please pray for the people of Ukraine.  The unrest is growing by the hour, things are in constant change.  The pro government forces are attacking the protesters.  I've seen report of at least 19 killed today.  Up to a 1000 in local hospitals with injuries.  There are fires in Kiev in the government building area.....

https://www.facebook.com/EuroMaydanTranslations  You can go to Euro Maiden's page on FB and get up to the minute accounts if you are interested. 

Live Tv coverage  https://www.youtube.com/watch?v=Y_LFrMcoEm4&feature=youtu.be



I'm not a political science major....all I know is Ukraine has had a horrible history of being overpowered by it's neighbors, especially Russia.  Ukraine wants the freedom to chose the future path of their country.  By all accounts their present leaders are corrupt.  Not all Ukrainians want change and some do want to be back under Russia.  This is the tension.  We were told that Ukraine was greatly divided and that a civil war could be coming.....I guess I am shocked that it has started so soon.   Being American, I can understand wanting to have the freedom to help shape my country. 

Please pray for the people of Ukraine and for freedom.  I think of our friends living in Ukraine, people that we fell in love with while we were there.  I think of all the orphans, life is rough for them already, how will it be if civil war comes to that country?

My heart is moved by the things I've seen and heard of priests supporting the protestors, of the protestors praying knowing that they maybe killed by the government forces.....

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Well no gardening got done today!  I had a doctor's appointment that lasted for 3 hours...of waiting...and 1 hour drive both ways.  I went for a 2nd opinion on the thyroid cysts and it looks like I will have to have a biopsy.  The doctor was great once I finally saw her and she was upbeat.  She feels it's 90% not cancer and if there is a problem it should be contained as she can't even feel it manually.  But I just don't want to deal with this at all!!!!  UGH!!!

I came home to Steve having totally mulched a section of the yard where our big adult swing is:)  That was nice!


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So my thoughts tonight are with the people of Ukraine....may God bring forth justice in that country and I pray for our friends there who we love and all the children in the orphanages.  

Monday, February 17, 2014

Working on the garden


Today was a beautiful Florida day and we worked on the garden and yard.  As you can see I filled up our old van with 40 bags of mulch and 3 bags of compost.  On the second trip I got 5 more bags of mulch and 7 bags of compost and 3 bags of cow manure:)  Cow manure brings out the butterflies:)

I also bought some plants.  Cucumbers, tomatoes, collards, herbs, different kinds of lettuce and some marigolds for the garden (that helps keep bugs away) and some peonies to put in hanging baskets.  We also got a big climbing red flower vine.  I have no idea what it is but I love vines on our fence, it makes the yard seem cooler in the summertime. 


 
 
yes the van was full!
 
 
 
yep that is the back LOL!  I had to drive that home.  It was so heavy that one of the tires looked somewhat flat so I stopped and got air in it!  The guy a the tire shop was amazed I had so much in the van!  But I got it all home and we worked.
 
Pictures tomorrow.....didn't have time to get everything in the ground but got two beds planted.  I LOVE to plant!  Everything is so new and fresh and full of promise! 
 
 
Sarah is walking all over with her walker, it is something NEW for us to get used to.  Today she was adamant that she wanted to be outside with us working.  She sat on the big swing but loved being a big girl.   she is also learning to let go and STAND without holding on.  This is pretty new for her.  She has done that a little but now she is doing it numerous times a day!  Go Sarah Joy!
 
Tomorrow if my blog will cooperate, I will have pictures of the yard and garden and maybe the hard working gardeners (Shad and Steve!)  They did a good job today and I know they'll sleep good tonight!