MRI & Ticks & Amobas

Selah had an MRI today to see if there has been any negative changes in her brain.  We won't get the results for a few days, it has to be compared to the other MRIs she has had since the accident.    Selah did fine, just got upset when we got home & had to have some meds. 

Since I had the old MRIs with me, I walked down to the doctor's office a half a block or so from the hospital to give the CDs to the doctor, while Selah was in the MRI.  It was a beautiful day, but I had already told Selah's story a half of dozen times so I was fighting tears walking to the doctor's office.  It never gets easy to tell the story.....it's a Cinderella story.....  a little girl rescued from an adult mental institution....a little girl that was not originally part of our adoption plan.....the homecoming, the wonderful few months that she got to experience so many new things....then the first family trip....and the accident....everything stops then....the Cinderella story with the wrong ending.....it's still so raw to me.

Then on the way home, we stopped to pick up Shad and then we took the nurse and Selah out to see the property.  The nurse was thrilled with the location (it's closer for all our nurses)  he was ready to move us out there today LOL  This was the first time I've taken Selah out to the site, we didn't get her out since there are a lot of bugs- specifically horse flies that I believe come straight from hell!  I got bit again today out there.  I'm sure when all the bush is cleared, there will be less horse flies.  This is just the time of year for them, we have some here at our house too. 

Poor Shad came in from outside and told me he had a tick in a "sensitive spot"    I was ready to go to the ER with him but he wanted me to try and get the tick off with tweezers.....I got my magnifying glass and tweezers, and got it first try THANK GOD!  I had told him if I could not get it the first time, we were going to the doctor!  Yes we live in the country......THAT was a first!!!!!!!!!  Poor baby!   Although he took it like a man and laughed about it, he is a tough boy!

Well we got a phone call from Walmart and now I can go and "rebuy" my kayak.....going after supper to get it!  Geez....I was so wasted by our trip, I didn't even have the energy to fight anymore, glad they called me!


http://www.amoeba-season.com/ 
Go to this site
It was made to educate people about water amoebas by one of Sam's doctors.  He & his wife lost their son to this disease -  Amoebic Meningitis. 99% lethal. 100% preventable.  As you know I grew up in Florida, been in all kinds of water, when I was young I didn't care, dirty pools of friends....etc....  (I also swam in many lakes where I could see gators all over....just plain craziness. )   Well now I know about this amoeba that is in lake water, dirty pools (even clean looking pools) etc....  Even springs are not excluded although the doctor did say if the temp is under 80 degrees chances are slim that the amoeba will grow there.   Salt water is safer.   It's best to wear nose clips....we've stayed out of lakes since their son died and been careful of pools too but now I'm going to push my kids to wear nose clips.  Wish me luck!   Please take the time to read, nothing will bring the Dr Gompf's son back but they want to prevent others' deaths!   And I just want to say I appreciate this doctor so much, he took great care of Sam over the years when he was in & out of the hospital constantly.  I liked Dr G because he is a doctor who listens to parents' concerns.  I was just devastated for them when this happened, it actually happened while Sam was in the hospital-a different hospital.  Everyone was so sad for them.  As a parent, I am glad to know the information they are sharing to help prevent other deaths.  God bless them! 

Ranting....

My father in law was taken by ambulance to the hospital tonight.  He is stable now, my husband went to see him.  Please keep this sweet man in your prayers.  He has always been a good father in law to me as was my mother in law before she passed away.   I've always said they've been better to me than my own family was.  And they certainly raised a good guy for me to marry:)   He's in his mid 80's and has a lot of health problems.  He lives with my oldest brother in law & his wife and they take wonderful care of him & see that he has good caregivers.   Thanks for your prayers for this sweet man. 

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For all the Shad fans, he helped me make a Giant Gingerbread man tonight.

It was good, poor Gingerbread Man is missing some of his extremities now.....

 

 

My poor collards....

something was eating them up so Steve cut them all back and then we doused  them with Dawn ...we will see what happens with them.  I've never had a problem with collards before this year.

Also this year my pepper plants have just turned to stems!!!!!  Then almost the same with the tomatoes too.  The squash plants I bought died but the ones I raised from seeds are fine.   The eggplants have done fine and the lettuces lasted till just last week.   The herbs are all good except for the one Rosemary that I cut and took to a friend, luckily she knew it was NOT rosemary, it was dog fennel a weed!  I took it back to the plant store I bought it from.  THAT was the same store I've bought from for years, same brand of plants and I'm having all these issues. 

The potatoes and carrots are good too, same with the onions. 

I never usually even have bad worm problems till July and it's still May and I'm having issues.  Strange year for me in my garden!

And while I'm on the frustrated  rant.... this was my FB status tonight....
well ....'Whoop-de-dang-do' to finish out this "wonderful" day I get the FIRST email from Walmart saying they are refunding me the money on my kayak order. So I call Walmart since this is the FIST and only email I've gotten from them. So the kayak is at the store....but the paperwork is done for it to be sent back so they can't resell it to me. Did I mention this was the ONLY contact I had from Walmart ? The kayak was only there for FIVE days, they said they usually keep something for 7-14 days....I'm so not happy! By the way, this was my Mother's Day present.


So I've been waiting for my ordered Kayak to come to our local Walmart.  I'd ordered it almost a month ago, it was to be my Mother's Day present but I knew it wouldn't be in the store till after may 15th.  So I waited for the text & email that I've gotten in the past notifying me that what I'd ordered was in.  Nothing till I get an email saying they're refunding my money.....no reason given.

I called the store and am told that they HAVE the kayak but are sending it back.   I apologized for not rushing in but since I'd gotten NO notification saying it was there, I have a few other things that I have to do besides stalk Walmart......  I then asked how long they hold things....he said 7-14 days...I reminded him that it had ONLY been FIVE days since it supposedly got there.....

BUT since the paperwork is done, I can't "rebuy" it   The Kayak must go back.....I'm so annoyed!  AND I want my kayak!  I don't' usually whine too much on here but I just think this is the most foolish thing I've personally encountered recently.....

So their computer system had a glitch, didnt' notify me, and the paperworkis done days before things are normally sent back....the kayak is STILL in the store....yet I can't buy it back....makes perfect sense huh?


Ok let me shut up and go to bed....


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Tomorrow Selah is having a sedated MRI to check to see if she has "lost" any section of her brain.  If there has been radical changes since the last one, then the neuro will assume she has small seizures.  We have not seen any regression on Selah's part so I'm not too worried about this.  But it will answer the seizure question hopefully once and for all.   Please pray that Selah will be calm and not get stressed out.  I feel like this is a waste of time but if there is anything to be learned that will help Selah, I guess we should do it. 

Thanks for listening to my rants tonight:) 

Weekend

Hope you've had a great weekend.  Yesterday we did a phone interview for Rochester Ronald McDonald House's annual telethon.  We've been involved with various telethons and fund raisers for RMH.  We just love and appreciate them so much.  If you ever want to contribute to a place that does exactly what it's mission statement says....give to Rochester NY Ronald McDonald House.   They are so focused on helping families who are struggling with children in the hospital.   We've stayed at several RMHs over the years, NONE are on par with Rochester NY RMH, they are the top of the line from their volunteers, to the love that is felt....no one can compare:)   We always appreciated them, but after the accident, we were just surrounded by love from them.  Thank you again Rochester RMH!!!!


After we finished the interview, we went to a square dance.  I didn't bring my camera:(  boo!  Square dancing is so much fun and really great exercise.  I only danced one set but had a blast.  Our little ones Sam & Sarah both were a bit needy this time and didn't want to just sit and listen to the music, they wanted us to hold them!  So we were a little occupied with those two.  Steve danced all the sets, and Shad finally danced a couple of them too.  Everyone had a great time.


We are having such beautiful weather in Florida but I think it is going to get back to normal soon.  Today was gorgeous, I laid on our swing, and almost fell asleep.  THIS is why folks move to Florida....

After we ate lunch, we took our friends out to see the property where the house will be built.  It still doesn't seem real to me.  But I've certainly bonded with the property.  We drove around the area, trying to figure out if the neighbors have wells or if there might be "city water" LOL    There is a phosphate plant not too far so it might be best if it is city water.   I love the area, wish the plant was further away, it's maybe 2 miles away from the property.  That is the only thing I worry about.  One thing tho is I look at all the plants/trees/wildlife in the area and it seems good.  We found a spring that used to be open for swimming but now only allows a few people in at a time.  Steve ran over a snake accidently and we loved exploring around! 


This week promises to be busy for us.  Hope you all have a great start to your week .....

Semi-Finalists!

Someone sent me a message to let me know we are Semi-finalists in the van contest:)
http://www.mobilityawarenessmonth.com/entrant/selah-clanton-zephyrhills-fl/
Evidently the choice of winners is more than JUST how many votes someone gets!  So we'll keep our fingers crossed!  Winners are notified on May 30th.  We REALLY need a van now that we will be moving.  When we no longer live near the church, it will be hard to get Selah to church on the weekend.  We like for us to keep that tradition together as a family.  It's thanks to all of you that we made it this far!!!  And especially to Denise who nominated us:)


Well I got my first sunburn of the season:)  I sat outside talking on the phone and didn't realize how much sun I was getting, I have some red legs tonight!  We are having the most beautiful weather, it will be the last little "cool spell" before we hit summer temps.  If only Florida could stay like this all summer long!

Well this is short tonight,  Steve & Shad went with some friends to see Godzilla:)  We've been chasing the little ones around all night.  Sam got all the soaps/shampoos he could grab during his bath, then he leaned over and started pooping while Jon was getting him dressed, I caught it...BEFORE it hit the floor...yep, something new every day... I KNEW I should have set him on the toilet.  LOL  THEN he grabbed a cereal box and turned it upside down on the kitchen floor.....It's funny all these little "toddler behaviors"  he really has just started doing things like this.  he never used to get into things but now he grabs everything he sees!   And for some reason, Sarah was very needy today and wanted to be held, a lot....AND she ate FOUR fudge popsicles bars.  She cried for another one but I started rocking her in the rocker:)   So they kept us busy!

The ONLY thing Jon wants in the new house, is a built in baby gate to keep Sam out of the kitchen!  he gets into everything....daily! 

Hope you all have a wonderful weekend!!!!!!!!

Pictures of the property & some medical news

We're still catching our breath over here ......as you can imagine the new house is quite the topic of conversation with us and our nurses:)  Exciting times!  Steve went and did 5 hours of our "sweat equality work" at their thrift shop today.  He had a really good time, you'd thought he got paid for being there as much as he liked working:) 

Yesterday I took Sarah to the neurologist.  He confirmed that she has CP.  Actually he seems to think it is worse than we thought.  He believes she may have some issues with her hips.  We've had an appointment for her to see someone but that is not until August.   I don't' think the doctor thinks she will walk independently  ever.....  I've been coming to that conclusion myself.  She has hit such a plateau in all her motor skill areas, this might be as far as she goes.  IF she'd been worked with as an infant and toddler, it might have made a difference.  But being tied to a bed, didn't help matters. 

After talking to her PT today, I do know I'm not agreeing to any type of surgery, it just wouldn't give her much change and it would be at a high price to her.  I can't see my Sarah in a body cast (worst case) for months.   She doesn't have the understanding & I'm just not sure she could handle it emotionally.  She has NO pain from the impairment at all. 

The neurologist could see how bonded Sarah and I are and he remarked on that since most kids coming from a mental institution have bonding issues, not my girl:)   After Sarah decided he wasn't going to give her a shot, she warmed up to him and played back & to with him. 

I'm ok with all of this......we adopted Sarah knowing full well what we were committing to.  We'd hoped we could have eye surgery for her, and that was impossible due to her eye's condition.  We really hoped she'd walk on her own but....   Nothing changes our love for her.  We adopted her where she was and are committed to whatever happens.  It's not a big deal for us, and she is a happy girl regardless.  She has love now and plenty of food and that's enough for Sarah:)  Love my girl!


Well here are some pictures of the property:)

 

 

this is taken from the back of the property looking towards the front right side.  There are too many bushes to get all the way back

 

 

the old house that is being torn down is behind us.

We are about 30 feet from the back property line

 

 

 

 

 

Not sure what this fir like tree is, but we had one in my front yard growing up!

 

 

this is from the front of the old house, love that we are further back from the street.

Also love the whole time we were there, no cars went by:)

 

the boys exploring off the side of the yard

 

 

inside the garage (that is staying and becoming a shed)

 

 

 

 

outside of garage

 

 

Beautiful property!  The neighbors on the left side are on the other side of their property. Can't even see their house.   The neighbors on the right side are closer but the shed is in between us and their house is set back.   No one across the street and not sure about behind us since the trees/bushes were so intact.  I can't believe I lived in NYC, now just being in Tampa stresses me out, I don't feel like I can breath deep till I get on some of the back roads:)  I'm so glad this is not a subdivision or in town!  I guess you can "take the girl out of the country but you'll never get the country out of the girl"  LOL

 

 

 

An update on Sonya

http://www.gofundme.com/78kap0

ALL the money came in and they are going to have surgery this month!

BUT the last bit $14,000 came as a loan, which is great BUT we'd like to see them not have any debt from this surgery if possible.  Please think about giving still.....please pray that more will come in.

And please pray for Sonya that this will work, with no complications!

 

Also an update on Connie, the lady I requested prayer for:

the surgery went good, no complications, they got all but a small amount of the tumor out.

the doctors are concerned that it might be cancer.  The results are not yet in.  She is already home!!!!!

Please pray for her!

 

 

We are approved!

God is faithful......

We were approved by Habitat for Humanity for a 6 bedroom/3 bath home.....  We are in awe of God's goodness to us.  I had turned the paperwork in last summer and just assumed we were turned down when I didn't hear back.  At the time, we were fighting with insurance to retain Selah's nurses so that was my focus.  Another first homeowner program had turned us down because we basically have no credit.  When I quit working when Sam was born, we paid off our credit cards, cars and from then on used cash only.  We did not feel we could afford to maintain any debt.  We actually thought that was the best thing to do, but we learned that's not what banks want to see.  However HH looked at our credit situation differently.  So when I got the call last week, I was floored. 


Being in ministry we had always leased a home, so we would not get a call to move and then have a house payment.  Owning a home, was not a big deal to me and if you know my husband, he really is not one to feel he has to acquire things.  Our idea was more to be flexible.  When we took this church, and moved to the parsonage, it was great.  We were able to remodel it based on our family at the time, just the three boys.   We were able to squeeze the girls in and things worked well for us.  Even after the adoption, we felt like we could manage with all of us living here.  We love the area, the property and living in the country.

When the accident happened, we realized that we would have to evidently move.  Some people wanted us to remodel the church's parsonage.  But I knew  that wasn't a good idea since this is not our own home.  If Jon were to resign as the pastor or retire, we'd have to move.  If we'd put a lot into remodeling an area for Selah, it's not like we could take it with us.  PLUS we needed time.  After a traumatic event, people are counseled not to make big decisions for at least 6 months.  I felt a bit pressured to make some decisions at first, but the only thing I could think of was just getting home with Selah.  It took us six months to get her home.  Then we had to adjust to our "new normal"  having nurses in the home 24 hours a day, the boys gave up their room and sleep on the floor in the little kids' rooms.  They've never complained.....   But I think we needed that time to just catch our breath. 

Once we got turned down last year by the one first time homeowner's program, I didn't think this route would work for us.  So I just prayed and told God our needs.  I was able to give Him the situation.  And I refused to let myself get worried or anxious about it, nor would I get envious of other's situations.  I really believed God would work out WHAT we needed, WHEN we needed it.  I didn't want to rush the situation and we have so much to concentrate on anyhow, that I just "let it go"

The one thing I couldn't help but worry about was Selah.  I want everything to be perfect for her, but there are things that are complicated now and will only get more complicated as she gets older.  Giving her a bath is hard, Just carrying her down the hall, makes her stiffen up and it is hard to turn her in our small hallway to get her in the bathroom door when she stiffens up.  Her wheelchair barely fits in the hall/doorways and she has lots of equipment we have to put in other rooms, or awkward places since there is just not room for it in her room.  It makes it inconvenient on the nurses and for Selah.  Also the nurses have to empty all her secretions and mucus in our bathroom, Selah has MRSA in her nasal/trach areas and that has been a concern for the rest of the family.   And obviously in such a small home, if one of the other kids gets sick, it's harder to shield the nurses and Selah from them. 

BUT we have managed and we have managed with plenty of smiles.  Our family rolls with the punches and this has been a big punch, almost a punch out but God has given us grace.  Since our life changed with Sam's birth, I've determined "to learn to be content in whatever state I was in"  I truly believe we get ourselves in trouble when we are discontent and complaining.  I'm not saying I'm Ms Mary Sunshine all the time LOL but when it comes to our home life and what we have, I'm very careful to keep my heart from uncontentment and envy.  I try to count my blessings, not my needs or wants. 

I'm not sharing this to prove how good of a Christian or a person I am but to share how God helped me maintain my heart.  When I'd begin to feel unsettled, I would pray about it and remind myself that most people in America including myself have a higher standard of living than the majority of the world by just having clean drinking water.  I'd think about the orphanages I've been to and realize, my life is easy to compared to so many. 

My kids really had hoped that Extreme Homemaker would chose us, as someone had sent in a recommendation but even tho that was fun to think about, I was a bit hesitant really in my heart about that.  We just live a bit more simpler than that.   This is more, us.  We are involved, we will be working and we will also have a mortgage.

God has been so faithful to walk with us through the darkest deepest valley.  He was with us in the good times, He provided for our adoption of the girls and He was with us every second during the crises time following the accident.   I don't have all the answers of WHY things turned out this way.  But I know His hand has held us.  He has taken care of our needs, helped us with the nursing situation, given us the strength to work through the grief of a near drowning and how that changed our lives forever while still making new memories with the other children.  When you have four more kids, you learn life goes on despite heartache.   And once again He is providing for our family in a way, that we could not have imagined a week ago.  We believe "every good gift comes down from above"  so we look at this gift with thankfulness. 

So my heart is thankful and of course we are excited.  The boys are really excited about having their own rooms!  YEAH!  I have to brag on them, they aren't perfect but they've never really complained about anything, not about losing their room, not about having to have all their stuff put in the church's office in boxes, not about having so many nurses/therapists/teachers come in our home.  They've made our lives so much easier by keeping a good altitude.  I appreciate Steve & Shad a lot for NOT adding to our stress and burdens.  In fact after living in ONE room at Ronald McDonald House for over 4 months, and then almost 2 more months in a hotel, our house seemed quite big when we finally got home after the accident.  It was like a dream to even be home.  And they were great when we were at the RMH and the hotel.  Steve did his schoolwork and watched over the little ones AND volunteered at the RMH as did Shad.  I appreciate those two a lot! 

So the next steps are to work on the plans of the house so it is suited for our needs.  We are going to start on our hours - we have sweat equality hours to do-  Steve is starting tomorrow at 9 am:)    The old home on the property will be torn down and the property cleaned up.  Actually building won't start till October, but that time will go quick. 

We have grateful hearts tonight, now the burden & worry Selah's ongoing physical needs is gone.     She will have an area devoted to her.  We are blessed and humbled by this.  That is what means the most to me (although I am quite happy to have my own little bathroom!!!!!) 

Happy Mother's Day 2014!

Love being a mom to my five blessing- they each have a story of how they miraculously came into our family both by birth & by adoption. Each story is unique, each story is unusual & I love it! You know we can't do things like everyone else:) Thank you God for Steve, Shad, Sam. Selah & Sarah! I'm BLESSED!

 

I love this selfie my bearded baby took of us.  I still remember our first Mother's Day with him while we were living in NYC!  I was THRILLED to be a mom:) 

 

After 6 years of marriage, I really didn't know if we'd ever have kids, and was SHOCKED beyond belief when I found out I was pregnant.  I never knew that baby I was carrying would bring me the joy he has.  I've enjoyed him from the day he was born, through all the stages, which were easy with him, to today, growing up, getting ready to graduate.....  He gave me a very easy introduction to motherhood:)

 

 

My boys!

 

 

me, Sarah and Jon

 

We ate at Cracker Barrel on our way to visit a church member in the hospital.  I usually hold myself back but hey it's Mother's Day so I got fried shrimp, hushpuppies, and 2 servings of fried okra.  Plus biscuits and honey.....YUM!

 

As you can see, my family can't quite stay up with me when it comes to southern food....This is what the backseat looked like on the way to Tampa!

 

LOL!!!!!!

 

 

This is not staged and I almost wrenched my back to get this picture!  I do believe Shad is his father's child LOL!!!!!

 

 

Hope you all had a marvelous weekend!  If you are a mother, Happy Mother's Day.  I know for many Mother's Day is hurtful, it was for me for many years.  When I was a child, I didn't' have a "real " mother and that was embarrassing  (although I loved my aunt)    Then as an adult, I didn't have children for many years.....I know the sting.  We just do not make a big deal of Mother's Day at our church.  I guess knowing the sting that many women have felt, we realize it is a sensitive area.  The church we pastor, used to do a full big production for Mother's Day and I saw several women grieving for various reasons.  Over the years, we've scaled back and it's mentioned, but not promoted.  It really happen unconsciously, and now I'd certainly find it hard to start emphasizing it.   I think we are at church to have our  minds on God, not earthly relationships...that's just my opinion, based on years of knowing how some can be hurt on Mother's Day.  It's probably a different perspective, but it's where we are more comfortable.  Y'all know I LOVE being a mother, but I see church as more a time to focus on God and our relationship with Him.  Go out afterwards and celebrate your mom.....

 

Totally off the beaten path here.....but I REALLY feel a church service and sermon should be devoted to God.  I'm not comfortable with any Non spiritual emphasis such as the 4th of July or Father's Day, Mother's Day....preaching about politics, anything like that....

 

When we were in NY and Selah was so sick in the hospital, we went to a church and the preacher 's WHOLE sermon was on the upcoming 2012 election.  I was so broken inside, I didn't give a fart about who the president was going to be at that point (and I find all that interesting)  But you see, that pastor didn't know a broken hurting mom sat in his congregation that morning. All he cared about was getting his views across (and I agreed with most of them, but it was not the time or place)   When we left I wryly said to Jon "Good thing I didn't need a word from God this morning" 

 

So in the same sense, you do not know what pain someone is bringing to church with them.  Maybe they don't need to be reminded of losses.....of their mom, of a child, of infertility, .......  they need to hear a word from God that will give them the strength to carry on.....

 

Ok off my soapbox......

 

 

Please pray for our church member and dear friend Connie.  Her husband is our Spanish pastor and they both volunteer in the prison ministry on a weekly basis.  She has worked with Jon for years (having just retired from the prison as administration)  She cared for the inmates when she worked with them and she still does as a volunteer.  She loves my kids, Sam usually sits with her during church now......Anyhow she has a brain tumor that is causing seizures.  At first it was thought to be non cancerous now, they don't' know.  She is having surgery tomorrow at 1 pm.  PRAY that the doctor can get it all out and that it is not cancer.   She is such a blessing to so many people and dearly loved by her family.   We were able to go and sit with them in the hospital today, her room was a room full of joy as she recounted stories of how God had worked miracles in their lives, brought her and her husband together, how she became a Christian.....just uplifting and precious.   If you heard all the laughter and praises in that room, you'd have NO idea anyone in there was going to have brain surgery in less than 24 hours!  God be with her is my prayer!!!