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!