Food Fun and Trusting through a panic attack

Look at my sweet girl out walking this morning!!!!!!  She is such a hard worker.  Sarah has an amazing sweet spirit.  I know there had to have been someone who cared for her, maybe a nanny in the baby house loved her.  Even tho Sarah has been through so much, she just is so very joyful.  I'm so proud of all she does!!!!

 

 

 

 

 

 

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Food Section......

I've never been much of a kitchen gadget person till we kept having kids!  Now I use a griddle to make pancakes, grill cheese,  all kinds of things on....  No more one thing at a time in a skillet on the stove LOL

  I SWEAR by our Magic Bullet!  It is the greatest thing ever.  Sarah still has not learned to chew her food.  She was served big spoonfuls of whatever kind of mush and she would just let it go down her throat....I saw it one day...NOT a good day.  But with the Magic Bullet, I can puree anything for her and she is so happy!

Now I have two new friends to join my kitchen team.....

 

I just got this.  Yonanas....  you take a frozen banana push it through, followed by strawberries then another frozen banana....it comes out like ice cream custard!  Sarah and me can eat us some bananas and strawberries!  But it is not the easiest thing to use or to clean, I think it's worth the extra time because it is soooo good!

 

Today my bread machine was delivered.  I had wanted one for a long time and finally found the one I wanted and ordered it.  Right now I am making gluten free cinnamon raisin bread.  In case you are wondering, none of us have an issue with gluten, it was just the only quick bread mix in the grocery store.  I thought it would be easiest to figure it out with something simple.  I'm just now starting to really use flour and things like that!  It was very easy once I read the book.  Everyone including the nurse is really excited to see how it turns out:)  Smells good! (update, it tasted good too!  I am a bread maker!  whoohoo!!!!)

 

Well I finally made one of the crock pot recipe I wanted to share.....

1 pound of ground meat (we use grass fed beef)
1 can  of Ro-tel tomatoes & chilies
16 oz box of the low fat Velveeta  cheese
1 can of refried beans

Brown the meat and drain it

Combine everything into a crock pot, put on high and in an hour you have a good appetizer.  I served it with Mexican chips.

Believe it or not, the Velveeta cheese is not that unhealthy.  I got the lower fat one and it had no terrible ingredients and was not high in fat. 


This trying to eat healthy is HARD!!!!!!   I'm really trying.  I figure if we eat healthy at home, and only eat out once or twice a week then it should even out.   One thing I've done is go back to drinking sweet tea instead of Pepsi.  For years I did not like my own tea, but either I 've gotten better or something but it tastes good to me now.  I read that ANY kind of tea you drink is good for you.  I prefer black tea, I know it's not as good as green tea but I can't get past the taste.  My whole family ALL drank tea by the bucket loads and lived long relatively healthy lives.  I put in just a little sugar and lots of lemons!

I used to buy frozen pancakes, now I buy flour, make them and freeze them myself, They are healthier and probably cheaper in the long run.  The kids love them.

Before Selah's accident, I was such an organized person.  I wonder where in the world did that girl go????   Now I am so not like that at all and I HATE it.  Right now I have so many different projects I should be doing but I can't wrap my mind around them, important things like pay bills...make deposits....  I did with the help of my friend and our school secretary, get Shad enrolled for school next year and his scholarship packet done.  Thank God, since the scholarship program closed today!   So Shad is going back to the private school the kids have gone to for years but Steve is continuing in home school.  When we started him on a home school program this year (which we had to do) legally he had to go under "an umbrella" that our school could not do.  So we joined a national home school program that uses the same curriculum that our school uses.  They have different requirements so if Steve were to go back to his old school some things would not transfer and I am afraid, he would not graduate next year!   He did some books last fall when we thought we'd be home in a few weeks and none of that counted towards the other program!!!   I feel bad for him but he doesn't seem to care about the whole thing.  I think it bothers me more than it bothers him!  

Anyhow, the organized Yvonne has disappeared, I don't know or like this unorganized person at all!  Honestly I read about PTSS post traumatic stress syndrome and that is one big sign of it.  I have no doubt that I have something like that.  I just thank God that somehow He continues to bring me through it.   This morning I woke up on the verge of a panic attack, it was like it was there grabbing at my throat all morning.  I had an overwhelming fear of death....it was crazy...and this while I was just going about my business.   I took one "happy pill" and a hot shower....I almost took another pill but I just focused on Who God is....NO MATTER WHAT....   He is still Lord of All, even if I drop dead, He is still the Creator of this world, even if I get cancer... He is still the Almighty God, even if we have an economic  collapse !!!!    (ok these were just a few of my fears this morning....LOL I like to cover ALL the bases with fears of what can happen, I try not to leave out any disaster) 

I can sit back and objectively look at all we have been through in the past year and understand why I have this crazy panic attack stuff but I won't let it rule my life.   I'm not too sure I have a choice about the waves hitting me, but I have learned how to ride the wave most of the time.  I've not had to take a pill in weeks but I've felt a few coming on, and I just rode them out.    The waves of sadness come like that too.  Laying in bed the other night, memories just flooded my mind...of last summer, how perfect life was....   I know some people wouldn't understand how or why I thought life was perfect with 3 extremely handicapped kids BUT it was handicaps we were used to and it was nothing to us.  We were in love with our GIRLS and couldn't believe how easy their adoption had been and the bonding.  I can remember standing in the laundry room, doing laundry and Jon came in and I told him "I have never been anymore happier in my whole life than I am right now"  I can remember being in the shower and praying and thanking God for the life He had given me.  One specific prayer I prayed was "God keep us all healthy, let us have a long time together on earth and keep us safe"    To me, my life was perfect last year.  My heart was so very thankful.  You have no idea how happy I was.   I want to be able to give thanks in every situation  (not FOR every situation but IN every situation)  but it is HARD to do sometimes.  Looking back, I'm glad I had those few weeks, 13 to be exact...I really do not think I'll ever be that happy again, this side of eternity. 

Sometimes when I am alone (not too often) and driving the down the road, looking at the beautiful summer Florida sky, it seems like I can see into eternity and I can grasp that HOPE for just a split second.  But that split second is enough for awhile to carry me through.   It's a daily, struggle, a daily fight to be able to trust and not to be afraid.  There really aren't words to describe how I feel sometimes.  But I am so thankful for His strong arm, that I can lean on those Everlasting Arms...

Yesterday during my time out with my friend, we heard a bit of a conversation at another table.  Some lady was saying to her friends, something like "you Are rich in Jesus's name"  And they were talking about finances, we could hear enough of the conversation.  Of course my eyes were rolling out of my head....my friend probably thought I was having a stroke or a seizure from stress LOL!  So she and I started talking about how having money and NOT having to depend on God, keeps you poor in spirit.  We both were able to share how God had come through for us time and time again (remember we both have FIVE kids so you know we need God!)  We both had times we needed financial help and an unexpected check was in the mail box that very day....and you know that is so sweet!   It's not like we laid around and waited for God to take care of us, we have spouses that work, she still works a job, I worked as long as I could with Sam.....so it's not like we don't' believe in working BUT there are times when you can work 2 jobs and still have a big need!   And we have been blessed to see God work those kinds of miracles for us!  She has a friend whose husband recently became unemployed and God did a big miracle right on time for them.  Her friend was in AWE because always before, she trusted in her and her husband's abilities to meet their needs, so they didn't need God in that area, but when they needed Him and rested on Him, then they saw a miracle that just blew their socks off because they knew they couldn't make it happen themselves!    So I do think of myself as "rich in Jesus' name" but Rich in experiences of how God has come through in my life time and time again. 

In the same vein, I'm rich with the experience of trusting in God when there was no one else to lean on.  This past year (the good and the bad) has deepen my life, it has caused me to turn to God in a way I'd never dreamed of before.  I've seen Him be so very faithful to us.   If I had the choice NOT to walk through this, of course I would have said "not thank you" in a nanosecond....  but in having to walk this walk, there is a depth of God, I've never experienced before and it is so sweet.  He is truly a God who is near to the broken hearted.   I say time and again, God was with me, the second I started running down that road to the emergency vehicles.... He wrapped His arms around me.  Somehow I knew it was my family....But God was there!  My heart is so grateful for that presence....

I pray each of you experience God in a deeper way.  I don't pray that you will have to walk through valleys to do it  but valleys and hard times seem to have a way of coming into all our lives at times.   So I do pray that when valleys and hard times come into your life that you will know God is right there with you.  And I pray that God will make Himself real to you before those hard times come.  When I was running down the street, I was shaking and praying out loud "Oh God Help"  that's all I could say....even if it hadn't been my family, I KNEW that someone needed God's help.   But you see, I knew that God that I was calling on, He wasn't a stranger to me.  I pray that you will let God into your life, surrender your life to Jesus Christ and get to know the God of this Universe if you don't already know him.  He will be there for you in the good and bad times, that I can promise you because I know it is real!   But there is a responsibility  of surrendering  your life to His hands.  Sometimes I have to surrender on an hourly basis LOL.  Not to say that I have to "get saved" over and over again but that I have to keep this "living sacrifice" on the altar.  The bible talks about giving our lives to God as living sacrifices in Romans 12:1  "Therefore, I urge you, brothers and sisters, in view of God's mercy, to offer your bodies as a living sacrifice, holy and pleasing to God--this is your true and proper worship."  I've heard a preacher say one time that living sacrifices have a way of getting up and walking off.....I've been guilty of that a few times too .....  But I do urge you to pray and ask God to make Himself real to you, give your life to Him and walk with Him. 

Thank you all again for your many thoughts and prayers for Selah and our family!  I am LOVING the emails and comments I'm getting!  Thank you!  I'd love to hear from you....  theclanton5@aol.com  or comment on here.  I read every comment and try to respond to many of them!  Thank you all!

Audience

On my blog I have a stat counter and it also shows what countries my readers are from.  I'm amazed when I see folks from all over the world who read my blog.  Russia, I get a lot of hits from you!  But never a comment.  Some countries like Dubai or the United Arab Emirates   I KNOW who that hit is from, a friend who lives there:)  I got a few hits from the Isle of Man, had to look that one up:)   Every area of the world, from South America to Asia, Europe, Africa has shown up....it is amazing to me.  Thank you for caring about our family!

Anyhow I'd love to hear from you.   I know it is not easy to comment on my blog....I know sometimes it is hard for me to comment LOL  but you are always welcomed to email me at  theclanton5@aol.com    I'd love to hear about your life and how our lives connected!   thank you for caring! 

This is "Family Fun Friday" as Shad calls it.  My husband is off on Fridays and we love to spend some of it together.  He often has things he has to do for the church, but it's always a good day.   We recorded a show about travel in Ukraine and plan on watching it tonight:)  We love Ukraine!!!!

Selah had another good night and is doing good this morning.  She will have therapy today and we are hoping that if she does good over the weekend, to put her back on the passy muir valve on Monday.  We want her to work off the trach but we've had to take it slow because of the infection she was fighting.  She seems to tire easily.  

You still have time to contribute to our Orphan of the Month.....we have $810 so far to send into Grace Have.  You can give directly to them or you can send a check and I will send one check next week.   Tomorrow we will have another child....there is an amazing story to tell!

Thank you for all you do and the encouragement you bring into my life:)

The Twietmeyer's Tale

Selah continues to do good!   We are so thankful.  Please pray for her, pray that God will help her brain to heal, now that her body is well.  We hope we will keep this trach infection at bay, or even kill it out of her system.  She may never be clear of it until the trach is out but we have to keep it at bay so she can be well enough to be worked off the trach!

Today was our day nurse's last day.  She was with us since day 1 and worked well with Selah.  We will miss her.  She is taking a position in a facility closer to her home with benefits.  We will have a new nurse next week.   Change is always hard, especially when it comes to someone taking care of your child. 

I feel like I got a "Mother's Day Out" with one of my Bffs.  Kandi has 5 kids like me...so between the two of us we have TEN kids...days out are rare!  We usually can walk together every morning early but that's about it....but today we ate breakfast and hung out till early afternoon!  Woohoo!  I feel like I won the lottery:)

Speaking of the lottery.....NO ONE has claimed it yet!  I went into "my' Publix and asked as I was checking out.....  The cashier said no one has claimed it and the news media are starting to call it "the lost ticket"!  Can you imagine....$590 million dollars LOST......  That hurts to think of....  I remember a story when the lottery first started....  a Baptist pastor's wife "found" a winning lottery ticket in their church's parking lot....  That story cracked me up!   But hey I'm out there every morning looking now!  LOL  That will be my story too.  Hey if God can do it for a Baptist, He can do it for me:)  (Love all you Baptists out there!)

Well I want to share with you a great ministry YOU can get involved in......   When we were at the girls' institution we saw three children that just grabbed at our hearts. 

 

this is one of the little ones that we were drawn to, our plan was to go back and get the three of them...then the accident changed everything.  Thankfully another family came for him!!!  He is thriving with them AND he is going to become a MK  missionary's kid!  Can you believe that?????

 

http://www.thestitchthatmakesthesweaterperfect.com/2013/05/twiets-treasure-hunt-wanna-join-us.html

 

The above blog address is the Twietmeyer's family post.  They have 15 kids!  YES 15 and one of them is that sweet little boy who is no longer a sad orphan but a loved and wanted son!!!!!   The Twietmeyer's have a ministry called Project Hopeful that works around the world with orphans and also with children and adults affected by HIV.  Now they are taking a step of faith to move to Guatemala to run a ministry to orphans.  God Bless them!   I encourage you to follow their blog, GIVE and PRAY for them!!!!    They are open to do whatever God leads them to do...  I love their hearts! 

 

I believe in sharing about ministries that are out there DOING something!   Life is too short to waste it and I hate to say but I see many ministries that are a WASTE....I will never share a ministry like that on my blog!  So if you are looking to support someone who has a major proven track record....this is one who does!!!  They live it out daily in their home.   So go read their blog...hear their heart....

 

 

I've been blessed, since God opened our eyes to the whole adoption world, of getting to know people from different Christian faith backgrounds that are just doing the work of the ministry, real life, get down and dirty in the trenches type of ministry!  I LOVE it!  Sometimes I think how it is going to be in heaven when rewards are given out....I think I know some folks who will be having to have help to carry their crowns for all the stars in them....but then they will lay them at Jesus' feet anyhow.....  I've met so many self sacrificing people....they encourage me to abandon myself to God and to remember we have ONLY one life to live for our Savior!  

 

I always say I can rest in heaven....until that day, there is so much work to be done! Due to our family's circumstances, we may not be able to do some of the things we had hoped to do but we will remain faithful were we are and we will be a part of others' ministries!!!!  You may not be able to go and do things but you can still be a part! 

 

And I know you are a part of praying for our Selah....thank you!!!!!!

 

 

Computer Work Day

Selah continues to have good nights and days.  She had OT this morning and did good.  This afternoon she is napping, since she had such a work out!

Here is a picture of my little monkey aka Sam eating a banana this morning.  No he does not have a hand deformity, LOL  he is just so excited that we let him hold it by himself:)

 

• I'm stuck on the computer today filling out several kinds of paperwork.  One is a grant for Shad to go back to his Christan school that he has gone to since kindergarten.  There is some type of fund in Florida called Step Up For Students that will give lower income families a grant if they meet certain requirements.  Shad has always had a grant but since he didn't use it this past school year (since the accident happened and we never made it home and then did home school)  I was not sure he would still qualify....but he does!  Problem is all the paperwork is due by Friday and their system keeps knocking me off of it!   I've been on the phone twice with "more than 10 callers ahead of you"  this is crazy!

I'm also doing paperwork for insurance.....it stinks....

 

And should be doing some paperwork for the church......

 

UGH!  And I really just want to go read my new book from the library!

 

 

 

ORPHAN MINISTRY UPDATE

 

 We have raised $810 this month!  So excited for "Sally/Patrica's family!!!!   You can STILL give through Friday!!!!!!!!  Remember you can go to Grace Haven and give on line anytime!  The family hopes to be traveling SOON!!!!!!  I'd love to meet our goal of $1000!

 

 

 

On June 1st we will start with another orphan focus.....this one will be a surprise to you....it's a BIG deal to us and we will be thrilled to unveil who it is and our relationship to that child on June 1st!!!!!!  

 

 

 

Busy Tuesday

Selah is doing great!  This new medicine really did the trick!!  she did good in PT and has had a good low heart rate all day.  It's a blessing!!!   My hope is that now that she is well or on her way to complete recovery from this infection of  two months, she will begin to really progress.  She has been sick basically since the first week of April.  There were times when she'd be ok for 3-5 days then problems would start up again.  If this can keep her well....who knows how far she will go!

This was my day to get alot of running around in, finally got an oil change.  Every time I'd try to make an appointment and go to the dealership (where it would be free) Selah would get sick.  So I just went and got it done at Walmart, I was way over due.  But then Walmart didn't have our kind of oil filter so I had to go somewhere else and buy one to have them put it on.  Nothing is ever easy for me!

We'd been looking and I found a child's size kayak for Shad and went and got it for him today.  The look on his face when he saw it and understood it was for HIM, was priceless! 

 

Shad is ready to roll on the river with Jon and Steve!

 

 

Sarah decided to crawl on board

 

so did Sam!

 

 

 

 

 

So it looks like the little ones want to go too....that won't be happening!!!

 

Thanks again for praying for Selah...please continue to do so:)

 

 

Memorial Day 2013

We had a great day!   Some friends and family came over.  We cooked out, did archery, target practicing,  and just hung out.  Selah is doing perfect....it's great!

 

Eating

 

Sarah can swing herself:)   Look at the wind blowing through her hair, I love this little girl!

she loves to be outdoors

 

Me and my Happy friend Jackie:)  We've been friends for over 25 years!!  She should be wearing the Happy Shirt!

Archery Time

 

 

 

 

me and Selah

 

 

I love a man wearing a gun:)

 

me doing target practice

 

Steve shooting the shotgun, he hits the target every time

 

Jon shooting

 

 

Jackie shooting for the first time:)  she did great!

 

 

me and my new friend:)

 

 

We had a blast, everyone had fun and left full!  As we were finishing up, our neighbors started doing target practice.  My friend's husband was standing the targets back up and thought my son had started shooting when he was out there!  We all laughed but he was cool about it.  Hey what else to do on Memorial Day except to target practice?  Reminds us of all the vets who fought and died so we could keep our rights....

 

Such a blessing that Selah is doing so good.  She sat on my lap in the living room for about 2 hours and her heart rate was normal.  She actually cuddled into me after a little while.  That felt great, I haven't really held her like that for awhile since everything was stressing her out.  It was good to include her in our party. 

 

Thanks for the prayers for our girl.  I have to admit, I looked at some pictures from last Memorial Day and it hurt my heart so much. 

 

A rare pic of Sarah sorta crying!

 

I like this picture of us from last year

 

Hope you all had a good day!

 

 

 

Mystery at the Clanton's house

Selah continues to do good.  We are so thankful for this medicine, it has made such a difference.  Her heart rate is back to normal, which tells us she is recovering.  I love seeing heart rates in the 60's and 70's all day long.  She is back to sleeping all night peacefully!  We are so very very thankful we were able to get the medicine on Friday (THANKS again Bill's Pharmacy of Brandon!)  If she hadn't gotten it, she'd be in the hospital by now, on Thursday night, Friday she was going downhill.  This made such a change in her!!!

Great service today, love seeing my kids involved.  Our oldest son does the the sound/media now and he does such a good job.   Kids nowadays just figure things out so easily!  It's good to see him involved and liking what he does.   After service we took flags out to the grave yard on the church grounds and put flags out for each veteran, we have 7 in our small cemetery.  Several were vets from WWI!  The others from WWII....  their families must all be dead, no one ever comes out but I was glad, that they were not forgotten today. 

We have a mystery going on here..... we've been noticing little things here and there....  a few weeks ago, we found the church's water hose uncoiled and pulled all the way to the back of the church and left on!  That was odd!  We thought someone used it and then heard us and didn't have time to put it up.  Then this week, one of our cat food trays went missing.  Today the other one is gone...the trays were big and aluminum so they could be used for cooking.  We are sure no animal took them as we have two fences, one big one put up by the Water Management  company that runs the back of the property and then our yard is also fenced in around our house.  We have a big outside dog also...I can't believe someone could come up without her barking but maybe she is used to this person.   Anyhow it is strange.   Tomorrow my fearless husband and brother in law are going out in the woods to check on things, see if they can find a camp.   I'm tempted to put out some food....I looked at my garden but didn't notice anything missing from it but it would be hard to tell as I have so much in it!   It's probably some old homeless guy.

We're not really worried.  I mean we lived in the inner city of NYC with the homeless out on our street but it is a little unnerving.  We have so many people at our house daily, with the nurses and therapists as well as night nurses.  On the weekend, alot of time some of our family stay over with us too so we're not worried.  Plus let's just say we have plenty of defense if we did need it....please don't ever try and "scare" us, in fact CALL before you come because if we don't expect someone....we ( I mean I) have been known to react swiftly....LOL 

Thanks for all the prayers for Selah:)  Sam also seems to be fine now.  Every so often he will rub his eye some but he doesn't act like it is too painful.  It looks awful inside, we've seen him open it a few times...UGH!  Poor baby!

Hope all my American friends have a great Memorial Day tomorrow, enjoying friends and family.  We thank the veterans who fought to give us this wonderful country that we live in!  We are planning on some friends and family coming over for a cookout.  This will be our first "party" since everything happened....Glad that we will have some of our closest peeps with us!   I hope to take some pictures tomorrow:)

It's working!!!!

After the craziness of yesterday I have great news!  The medicine is working and we can already tell a difference in Selah!   Thank God!   The reason this inhaled antibiotic works so well and so fast is that it is literally thousands of times stronger than a liquid med and it is given through the trach which is where it is needed:)   She had a great night, a great day and evening.  We are all very happy:)  It's feels like a huge burden has rolled off my shoulders, worrying about her for the past 8 weeks, not having anyone listen to me, not being able to get her well....and now we have a doctor who listens and can take care of it.  Our pediatrician could only take us so far but thankfully he sent us to the right specialist who is able to do the rest!!!!  My heart is grateful!

Today was "fun Friday family day"  Shad started calling it that and we love it.  We went to Orlando to the Bass Pro Shop.  It was crowded and overwhelming but Shad got a real child's size cross bow.  He is very happy with it.  He had gotten Steve's bow & arrow and is quite good with it.  This one has about 30 pounds on the string so he has to work it, it has a sight too.   We had been promising him one, but we just didn't have time to go over and get it till now.  I think it was well worth the wait. 

I STILL haven't taken any pictures of the gang since their haircuts but here are a couple from today....
Henry the cat, in the collards this morning. 

Shad and a gator at Bass Pro Shop

 

 

 

You can see Shad has no hair LOL 

 

 

 

One things we are really trying to do with the boys is to help them stay away from electronics  (says the Mother as she is on her laptop)  But we just see how hard it is for them to balance electronics and we are committed to giving them alternatives.  Yearly we buy a membership to the State parks and we've bought kayaks for them to go on the river with their dad.   We are encouraging archery too as that is a very skilled sport.  We also shoot guns and target practice, believe it or not, I am a really good shooter.  No one can believe it as I am half blind myself LOL.    Actually my husband and I had a quick "date" at the shooting range tonight:)   Betcha this surprised some of you!  I grew up around guns and hunting so it's common to me.  I don't hunt, my husband did when he was younger and our oldest wants to start hunting....I'm not against hunting....my thing is you have to skin, cook and eat anything you bring home.   My family supplemented our meat supply by hunting.  I didn't skin anything!!!!  And I'm too old to start!  I can barely pull the plastic bag out of the turkey's butt at Thanksgiving without gagging!  You know I'm not about to skin something!  

 

 But the "battle of the electronics" is the biggest one we fight in our home.  With the electronics (tv, computer, video games, phones) come attitudes we do not like.  I say we brought this upon ourselves and some of it we did actually buy, some things were given to our boys over the years....  We believe in BALANCE and do not want to be parents who say no to everything, but on the other hand, electronics take the place of real relationships and we see that so clearly in the younger (and even our) generation.   Hopefully we can keep the balance by keeping them outside and busy.  During our time in NY after the accident, the electronics WON as we were at the hospital so much, the boys were with the little ones at the Ronald McD House  and things were so stressful.  Now we are back to fighting that monster!  But the monster can be tamed, there is a place for electronics, we just have to keep it in its place!  

 

Thank you for praying for Selah, please continue!!!!!

CRAZY DAY!!!

Good Lord, if yesterday was a quiet day today was a crazy day.....

It started great, got up early, met a friend for a quick breakfast, then rushed back home to pick up Selah, her nurse and Steve.  I'm having very bad neck/shoulder spasms and tightnessagain  so I needed Steve to help get Selah in and out of the van.  It's so hard to move her into and out of the van and to put the thousand pound (small exaggeration) wheelchair in to the van. 

We had the BEST appointment with the pulmologist!  She was just amazing!  She totally got everything and understood the situation.  We have a PLAN to get Selah well, and to maintain her!  And if she does get sick enough to go to the hospital we also have a plan for that!  Thank God!

So the plan is to add the Tobramycin which is an inhaled antibiotic to her meds.  She will be on it for 28 days and then off for 28 days and then back on.  The liquid antibiotic was increased due to Miss Selah now weighing 48 pounds...and the doctor could go up on the med.  So our plan is to see if this will work for her.

Selah is still "off" not well, so hopefully that will work, if not, then the doctor will put Selah in the hospital (not St Joe's but Tampa General) and have a PIC line put in for IV antibiotics and then we can take her home on that and flush out her system.

So either way we are covered and I really liked the energy and how the whole office worked together and were focused on Selah.  I'm so glad our pediatrician sent us there, it was a good call and I really think this will put Selah on the road to recovery AND progress!  She can't be weaned off the trach until she is well enough to pass all the testing.  This doctor feels coming off the trach will be the best thing for her but we have to get her to the point she can do it!

THEN the CRAZINESS began........we got home, and get a phone call from our pharmacy saying that we have to go through a mail order pharmacy for the med.  Honestly I was on the phone from 2pm till 7pm arranging for her medicine.  WELCOME to Obamacare....it is ugly!   During all of this I was interviewing a new nurse to take our day nurse's position AND I get told that our family insurance just denied nursing care for Selah.  Since she has medicaid as a secondary, she'll still get the 24 hour nursing and I've already started the appeal to our insurance and feel confident that she will be reinstated.  Our private insurance has never denied anything until Selah's accident and this is the 2nd time we've had something major denied.  We won the last appeal and I'm sure we will this time too.  The reason we want our insurance to pay is to be honest it pays more than medicaid and of course nursing staff would rather have the private pay than medicaid! 

So all this is going on, I'm trying to get in touch with the doctor ....at times I had phones in both ears, and the nurse was on a phone.... it's Friday afternoon and a long weekend in coming.  We were desperate!   I find out the kind of Tobramycin that was ordered costs $6000 !!!!!!!!   Can you believe that???????   So the pharmacy was forced to make us order from the mail order pharmacy BUT the quickest we could get it for her was Monday or Tuesday.....    So the doctor changed the prescription to the same med but the ONLY difference is we have to draw the med up in a syringe and put it the inhaler ourselves rather than it being pre measured out.....  that brought the price down to our co pay of $7......   a $5993 difference!!!!!!!!!!     CAN YOU BELIEVE THAT???????  (I actually didnt' even pay at the pharmacy, he said he'd straighten it out on Tuesday and between the two insurances, we probably won't owe anything- we didn't last time but even if we owe a co pay....that is nothing compared to the other med!) 

BUT no one had the cheap medicine.....EXCEPT for one wonderful pharmacy in Brandon...an hour drive away....and they closed at 7:30 pm....the doctor found them for us at 7pm.....we drove down there and they stayed opened till 7:45 pm JUST for us!!!!!   THANK YOU BILL'S PHARMACY OF BRANDON ON HWY 60 EAST!!!!!!!!  If you live near that area, give them your business!  What a great group of folks and they were happy to do that for us and so very gracious!!!!    

So......what a crazy day.... but I am thankful at the end of the day, Selah has the medicine that hopefully can clear her out completely and get her well.  So many people helped us today (and a few were not too helpful)   Driving home with the precious medicine on my lap, looking at the beautiful sunset reflected on the high clouds, like only Florida has....I had a very thankful heart...might have had to repent for a couple of things I said today(I keep it real) ....but I was thankful that God worked all this out for Selah today.  I'm not too worried about the nursing appeal, I'm sure that will work out too. 


WHEW!  I feel like I've been racing all day long....thanks for your prayers, despite all the difficulties of today, I do think this will be the change Selah needs to keep her trach clear!  This will make a big difference for her.  She did not have a good night last night, she didn't fall asleep till 5am but no storming but her heart rate fluctuated up and down....that is not a good sign for her.  I feel she is "on the fence" and could go either way.  I think this new medicine and going up on a higher dose on the oral antibiotic will push her over the fence to the WELL side:)  I certainly hope so!!!   It has certainly been a team effort to try and do something to get her well and keep her out of going to the hospital every two weeks!!  Thanks to everyone who helped!

I know I was going to cook and try out some crock pot recipes....well that didn't happen!  We ate tonight thanks to Sonnys BBQ :)   I was also going to post some pics of the new hair cuts...ummm  that didn't happen either....but here is one cute picture of Steve and Sam tonight in the van on our road trip for the medicine....

 

 

$200 came in today for our orphan fund!  So we are at $810 for this month, with only $190 to go to meet the goal of $1000!!!!!!  Please see the sidebar at the top of the blog that tells about our Orphan Ministry and how to give.  This month it is for the little girl we had hoped to go back for but now a friend is adopting her and two other children!   We are so blessed to be able to give towards this!

 

Please keep Selah in prayer!

 

 

Quiet Day

This has been a quiet day, Selah is doing fine, but she is still "off".  her heart rate went up this afternoon but she didn't storm.  Our nurse worked with her and he sat her up in bed and she calmed down.  She got some extra PT today which was good for her.  Tomorrow we see the Pulmologist and hopefully really get a good plan of action for her, in order to keep her out of the hospital for good!!!!  I really hope this will be a good appointment and not a waste of time.  If you have a special needs child, you know what I mean, MOST appointments with specialists are a waste of time and money.  Honestly I've always felt our pediatrician could handle all of that for us so much better.  I do know our peds office has been in contact with the pulmologist's  office and I think that will help everyone to focus on what we need for Selah.  And what we need is something, whether it is long term antibiotics or whatever to keep her out of the hospital and home where she belongs! 

Steve had a dentist appointment to tighten his braces and it's right across the road from the mall....  And there is still a sale going on at Macy's...and I still had a coupon....and there were two more skorts that came home with me!!!!!!!   Yes I have an addiction....the only time of year I can feed it is in the spring when the skorts come out.  You see, there are only a few skorts made, and then they are all sold and by July, you won't be able to find one in a store...unless you get lucky and find one at a thrift store.   So last year, I was too busy with buying things for the girls to buy myself any skorts....this year, I've made up for it!  LOL  but with the sale and coupons, they were only $13 each today! 

This afternoon, I went through my closet yet again.  I really believe when you buy something new, you need to get rid of something.  So I tried on things, ironed things, folded & reorganized and put things in bags to give away.  BTW, I like to iron....how werid is that??   Most of my clothes I buy at a thrift store, so it is not hard to part with something  bought for $2  or so!  I have "my style" the kind of clothes I feel comfy in and of course, SKORTS top the list!  I love when I can find something at a thrift store that is "my style" and still looks nice.  I'll only buy brand new or name brand things at a thrift store.  I love having my closet really cleaned out.  Everything is ironed and put together.....it just does my OCD self GOOD to have something in my life organized!    I gave some things to our nurse who is working with his church and taking things to the tornado victims in Oklahoma. 

Also today I got to go to the Nutrition S'Mart  a health food/grocery store.  They carry the BEST hummus in the world and it has NO oils in it.  (we stay away from vegetable oils unless they are  Expeller Pressed)   I bought a few days supply LOL  they also had a sale on chips..."healthy" chips....LOL  we get this one type of chips made with Olive Oil and rosemary that we call "marijuana" chips because they are so addicting!  Those chips with a Pepsi....HEAVEN  HAHAHAHAHA!  Forget the Pepsi....trying to be healthy is hard!

Shad has been finished with his 3rd grade work now for a week:)  He finished up 3 weeks before our school lets out so I'm proud of him  (and myself!)  Steve will be working through the summer finishing up 11th grade and doing his Russian class.   ( I told him to take Spanish but no....he had to go and pick a language that has its own alphabet! )  Actually I'm proud he is taking Russian.  It's because he went to Ukraine and learned so much of the culture and of Russia too.  Ukraine does have its own language but in our area, only Russian was spoken except in court, that was all in Ukraine.  Our family feels a strong bond and love for Ukraine.

So a quiet day, everything is ok but I'm still worried about Selah.  I'd like to be seeing her getting better quicker, I think in my gut I'm afraid we'll end up in the hospital still.  Please continue praying for her and that our appointment tomorrow will give us some real solutions to this problem of getting sick every two weeks or so. 

Please do not forget about our orphan of the month, we have raised $610 so far....I'd love to hit $1000 for her this month!!!  That would go a long way in her adoption!!! 

Thank you all for your prayers, giving and sweet comments to me.  You really encourage me more than you know!!! 

Mall trip

Selah is doing ok, her heart rate is up just a bit overall BUT not storming.  I bought her a probiotical for her to start taking in case it is just her tummy feeling bad with all the meds going in.  No fever or throwing up and no storming so things are ok I'd just like to see her feeling better after being on medicine since Friday!

This afternoon I took the kids to get their haircut and go to the mall, fun times:)  Sam loves getting his hair cut but if we touched his face near his bad eye, he'd flinch so it still must be painful.  Steve got a really nice hair cut and his beard trimmed, now he won't frighten small children!  Shad got everything shaved just like Sam and Sarah and I just got a trim.  I'll do some pictures but the little ones are taking naps. 

Then I found three pairs of SKORTS  HALLELUJAH!  And I ordered two other pairs that they didn't have in my size (they were too big whoohoo!)    We all have our addictions.....but at least my addiction was on sale 50% and I had a coupon for another 20% and got free shipping:)   If you don't know what a "skort" is...it is a skirt with attached shorts.  It is the most comfortable and modest shorts/skirt you can find.  Living in Florida, you tend to live in shorts.  Skorts can be dressy or you can wear tennis shoes and a tshirt with them....  I love Skorts, with having kids, it's nice to know I'm not flashing anyone when I bend over LOL   These were really good thick material and a little longer which is nice.  I'm HAPPY:)  I also got a badly needed pedicure and a 20 minute massage today....I feel very indulged!  Hey maybe it was me that won the lottery LOL!

Last night I put on a crock pot full of chicken legs and boneless breasts to cook all night.  This morning I had the broth to take off and save and now the chicken is baking with bbq sauce!  Also got baked beans, green beans and mac & cheese cooking.  That was so easy, meals around here have been hit or miss for the most part lately.  I hate that, I'm used to cooking supper every night....I've got to get back on track!  Some days I just don't focus good anymore.

When I had to wait at CVS Pharmacy for hours on Monday, I found a cookbook called "Fix It and Forget It" and it has all kinds of crock pot recipes.  I'm trying several out tomorrow.  For Christmas I got a 3 pot crock pot.  It is long and has 3 crock pots that are side by side in the machine.  My goal is to use it a couple of times a week.  I also have a giant crock pot, a medium/Large one and a small one.  I have NO excuse for not using them all the time.  There were so many recipes in that book to try out so we are going to do so.  Tomorrow night I am going to cook a wild chicken rice, seafood dip, and a Mexican beef/bean dip  all in the crock pots.  I do have to modify the recipes a bit to try and fit our healthier goals but it should be good.  I'll let you know and share the recipe if it all turns out good.  One thing I learned from that book was you could put in a completely frozen chicken or parts of chicken and let it cook all night on low and it will thaw and then cook....that was life changing LOL!

Thank you for your prayers for Selah and our family.  Thank you for your kind support, I love the emails and comments I get that are so encouraging!!!  Thanks! 

Tuesday update

Thanks so much for the sweet positive comments on here and emails I've gotten!  You guys are great!!!!  You get me all fired up!  I don't need any of you hanging out with me at the hospital, we'd all get kicked out hahahaha!!!  Thank you!


My heart is so heavy for the tragedy in Oklahoma....it's hard to grasp it....  Actually there is so much going on in the world in general and in my world (of my friends and family)  heartaches, sicknesses, deaths....it seems like a time of great need.  Just today there were so many needs among my friends,  older parents sick and dying, siblings very sick, accidents, several families in the process of adoption have heard the child they were going for, has passed away or is very sick...one child just home 3 weeks passed away from her health issues.... so many sad hearts in this world.....the only thing I can think is that "God is near to the brokenhearted"  and this world with all its heartache is NOT our home, we are just passing through....thank God this is not IT for the christian...we have an eternal Hope! 

Today I took Selah to her neurologist's appointment.  He sees Sam and is a very common sense doctor.  He really just talked to us about things, nothing new, no med changes.  He did really look at her eyes and feels there maybe some optic nerve damage but wants confirmation from an opthmologist, not that that really makes a big difference in anything we do with Selah.  We talked about who Selah was before the accident and how that has to be taken into account.   He seemed shocked at how delayed she was before hand....  It was sad in one sense...I felt he held back from being discouraging.  He did say we may still see improvement but that the longer time goes on with no major improvement, the less chance of it happening.  We've been told that many times so it's ok.  We realize that if improvement doesn't happen significantly in the first few weeks....then there is little chance the child will be back to her "normal" self ever.  Brain injury from a near drowning or loss of oxygen is the worst kind of brain injury.  I have had people tell me about someone they know who had a car accident or whatever and had a brain injury and how they astonished the doctors...etc....   That does happen in some cases like that because the whole brain is not injured.  With lack of oxygen the WHOLE brain is injured and it makes full recovery much more difficult.  It's still sad to hear....and to tell the story again... I almost broke down, but I caught myself in time.  I really hate to cry! 

She hasn't stormed for over 24 hours now!  The new med may be working!!!    Our main day nurse gave notice today, she is taking a job at a facility nearer her home and less hours and more benefits.:(  She is going to help me interview someone to take her place.   It will be hard to replace her! 


Next month I am going to my 30th year high school reunion....yes 30th!  I have to say I am really excited:)   I went to the 10th and it was not anything much to write home about....I missed the 20th altogether, I think we were going to Branson Missouri  around the same time...but now thanks to Facebook, I've reconnected with old friends and feel much closer to many of them than I ever did in school!  I think we have all gone through LIFE and are much more realer people than when we were in high school  (at least I hope so LOL)   I was not a "popular girl"  I came from a a strange family situation (for my era, in a small town)  and on top of that, we went to a Pentecostal church!  We were poor but most everyone in town was pretty poor.  It's funny, now I look back at folks I thought were "rich" and realize they weren't!   No one had alot back then.  People used to make fun of my glasses and freckles or that I wasn't allowed to wear pants for awhile...  To me it's just funny now.  

Growing up in a very small town, we were all pretty much together from kindergarten to 12th grade.  You kinda knew everyone...  so everyone has some kind of history with each other. We all have the same memories, same teachers, same elementary, junior high school and high school....   I left for college after I graduated and only went back a few summers so I really haven't had much contact with most of my classmates.   I do have a BFF from my childhood, who I will always be close to and I get to spend a whole long weekend with her!!!!  WOOHOO!!!!!!!!   We haven't had more than a meal together in almost 10 years!  We've stopped and met her for lunch or dinner when we've driven through Perry but that has been it!  Thank God for telephones and emails!   Growing up we were inseparable...in other words, I lived at her house:)  Her parents put up with me and nurtured me.  I loved being over at the Harris house....it was fun and full of love and laughter.  We laughed alot...if you'd ever had told me back then we would see so little of each other as adults, it would have killed me!   When you have a friend from your childhood, they really "get you"  They knew you as a child, a teen, they knew the silly you and your family too.  They often knew the dreams you had for the future....  It's really special to have a long time friend like I do and I am so thankful for Angela!   I can't wait to spend time with her!!!!   We've been close friends for 35 years and friends since childhood. 

I'm looking forward to seeing others too.  I think when you've lived half your life ( most of us will turn 48 this year)  and gone through LIFE....it's kind of a survivor's meeting LOL...  Who'd the heck ever thought we'd get this old???  Not me!  What is weird, since I haven't seen many of my classmates, they are forever 17 years old in my mind....then I see them in pictures on FB and I think..."well they are not quite 17 anymore LOL"   What unnerves me the most is seeing guys I had crushes on who have GRAY hair!!!!!!!!!  (although I have to say I didn't hae that many crushes on guys in my grade!  Ewwww Gross!  LOL)    But the grey hair is the oddest thing to me, it doesn't seem possible!   That is what makes me feel old:)

It's going to be a good girls weekend:)  Lots of laughs I'm sure!!!  It gives me something to look forward to:)  How much weight can I lose in a month??????

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So please keep praying for Selah.....sometimes I get more focused on the day to day, like getting her through this illness but I do pray daily for God to heal her and bring her all the way back to us!

Beyond Frustrated!

The best laid plans of mice and men.....

Well I had plans for today but they all got shelved....

Checked with our pediatrician and Selah grew THREE bugs out of of trach sample.  Soooooo.....as I was on my way to the dealership to get some stuff done on my van, I turned around.....

He wanted her to be on Cipro or she had to go to the hospital for an IV.  Since we had gone through it with Cipro already, I talked to the pharmacist about it and he actually called the manufacturer and found out that Cipro can't be given through a gtube because it does not interact with the body correctly that way.  Evidently it needs to work all the way through the digestive system to be effective.  So our doctor put her on another drug, it's new and our pharmacy didn't have it.....but one 25 miles away did.  So I drove through a storm to get it.  I called the nurse and Selah was having her own "storm" UGH!

We are hoping this medicine will work and clean her out.  I am frustrated.....if you remember JUST TWO weeks ago, she was released from St Joe's...the doctor basically did it against my wishes.  Since that was her THIRD admission in just six weeks, and each time she tested positive for the same stinking thing....I did NOT think just a little amoxicillin was going to keep her healthy....so now only one week after finishing the bottle, she is sick for the FOURTH time since the first of April.   To say I'm ticked off would be an understatement!!!!!     I can assure you, there are quite a few adjectives that are in my mind as I am typing this that are not wholesome.....nor am I adding them....

I'm MAD because there is such a lack of COMMON SENSE in the medical community.....I saw this with Sam when he was little and I knew I'd see it with Selah.  In my opinion it is worse in the South (in Florida) than up North.  I could be wrong but having experienced health care in NY with Sam and Selah....I can at least say in our situation that has been what we have seen. 

IF the doctors had listened to me when Selah was admitted the SECOND time for the same thing...maybe this would have cleared up.  Maybe if they'd listened to me at the THIRD admission for the same thing, maybe this would have been cleared up....but NO!  They would not listen to me OR to Selah's regular nurses (each time they went with us when she was admitted)    The doctors were too busy either trying to turn it into something more than an infection  (in one case calling in both neuro and cardiology  twice-because of the storming that happens when she is sick- and that has been documented)  or in the other case acting like I was making a mountain out of a mole hill....

So common sense does not prevail and who suffers???  My little girl...not the doctors who made stupid decisions and wouldn't listen to me but this little girl and that is what makes me MAD!   

So she has been sick since Thursday night, it keeps her from progressing, she feels bad and she has neurological storms and has to take more meds to keep her calm.  Now if this new antibiotic doesn't work, then she will be admitted once again.  I can assure you THIS time someone will listen to me.   Selah HATES the hospital and she regresses just being in there!  She stiffens up, she gets jumpy and has many more storms. 

I've thought about IF she has to go in taking her to All Children's but then we are further from home and having to start all over again.  To be honest, Sam was in there several times and each time something happened to him that was NOT good!  So it is not really where I want to go with her and they have residents and interns which just annoy me to no end....  There is a hospital in Orlando called Neumores but we tried to get them to take Selah so we could transfer her down here from NY and ALL they wanted to talk to me about on a conference call was their "nursing homes for children"  As you can imagine I told them quite bluntly they were wasting my time and their time.... It was not a pleasant conversation.    So I have no big hope for them either. 

I'm sure I sound like a WITCH and will probably get a few emails telling me how nasty I am....  well I can promise you, you ain't seen nothing till you see me fighting for my child.   I am not ashamed of it, I know God has given me wisdom (but for some reason, absolutely NO Tact) and I go with my instincts.  I am seldom wrong about things that I feel in my gut.  I've known since Selah's first admission with this crud that she needed something strong to get rid of it.  I should have pushed harder this last time but I didn't.  As it was, they had a social worker talk to me about their "discharge plans"  I believe they did it to try and intimidate me which did not work.  They did not threaten me in any way, but there was the feeling that I was a "problem mom" who thought I knew more than the doctor.  Which I did....   We did want her home and felt she was more upset being in the hospital and  hoped that if she got sick again we could manage it at home.

It's not like I'm home with her alone, we have 24 hour nursing, two different shifts a day so medical professionals are taking care of her and they could tell if she started to take a turn for the worse.  Plus they are only working with Selah and they know her, they know her normals and what is not normal.  But amazing no one wants to listen to them either! 


We have a good pediatrician but once she is admitted, he is out of the picture until she is released.  That is how it goes.....  If we can keep her out of the hospital, she has an appointment on Friday with a pulmonogist.  Our pediatrician wanted her to see him so maybe she can be put on a long term antibiotic so we can get her well, then work her off the trach and hopefully be done with it!  Alot of kids get infections in their trachs no matter how clean things are kept, it is an opening in the body that doesn't have any natural defenses.   So maybe that will be the answer for her. 

So I am beyond frustrated!  It would be easy for me to just put her in the hospital and let them deal with all the ups and downs of her being sick.  We can't be there all the time, so I wouldn't have the minute to minute worry about her. Heck it gives us a "break"  BUT it is not about us!   We want to do what is best for her and she just freaks out in the hospital plus being in the hospital puts you at risk for so many more germs! 

What should have happened at her last admission - the THIRD one for the same thing-  was she should have been placed on IV antibiotics and sent home.  I already had cleared it with the home health agency, it could have been done.  Then the antibiotic would have been strong enough to totally clear out her system.  The first doctor she had agreed with me, but then before the process could be started, a new doctor rotated in and called in several specialists (for no NEW reason)  and once she was cleared by them....(for cardiac and neurology) he felt she was fine and should go home WITHOUT the IV antibiotics.  He said amoxicillen would be enough....yeah right....

So this time IF she does end up having to go to the hospital....I can assure you she won't come home till she either has a full course of IV antibiotics OR they send her home on it......


Ok enough of my ranting....sorry this is just beyond frustrating to me!   Just be glad you can click off my blog LOL!!!! 

Please pray this new medicine will kill all three bugs and help her to recover!!!!!!

And for the ones of you who thought I was some spiritual giant....you may have changed your mind after this blog!  Sorry but I hate when I have to deal with foolishness, when it has to do with my child!   Maybe I don't handle it the right way and probably do not handle my anger very well either ....  But I can tell you I love my little ones, and will see that they get the best care possible! 

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While I was hanging out in CVS for hours.....  I did find a toy for Sarah.  Sarah is not a big toy player but I thought she might like this and she did very much!  She definelty can see light!  I love she actually starts holding it, that is big for her!

 

 

 

 

for some reason, I have always loved Sarah's little hands, I noticed them on all her orphange pictures we saw and I still love her tiny little hands.  I really love to see them holding a toy:)

 

 

 

 

 

 

what a sweet little girl she is, with a soft smile for everything. 

 

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