Tuesday, December 31, 2013

New Year's Eve!

This year FOUR of my kids have had surgery.....today Steve had his ingrown, infected toe worked on in the doc's office, so we were laughing about the fact that everyone but Sarah has had a surgical procedure this year!  Geez...... and people wonder why I'm crazy LOL  Steve can't jog for 2 weeks, he has become such an avid jogger that he is already complaining!

After his little surgical procedure, we drove and got Selah's TOBRAMYCIN (that is the correct way to spell it, sorry I've been spelling it wrong forever!)  Traffic was beyond crazy!  But she has her meds!  And she has already had a treatment, thank God. 

Tonight we are having some family over, so the food is in the crock pots (Crock pots are the greatest things!)

I have to say 2013 has been a rough year for us.  I won't be sorry to see it go BUT God has been faithful through all the hard times.  I've learned a lot about God this year.  We've seen some amazing things happen in our family and in our church.  I believe 2014 will be a better and hopefully easier year for us!  I really hope so!

The most important thing is although we don't know the future, and really have very little control over it, God will walk with us through each step if we will let Him.  He will be there in the good AND the hard times!  I'm so thankful that even tho we don't really know what's going to happen next year, there are so many unknowns in our lives BUT God is the One we can hold to, that truth gives me a deep peace!

Just wanted to wish you all a Happy New Year!
I hope and pray that each of you will have a great 2014!  Stay safe tonight!!!!!!

Monday, December 30, 2013

Pharmacy problems....


Today was one of those crazy days....trying to cram a lot of things into the day.  In a nutshell I got all my/church paperwork organized, did the final church banking stuff for the year, almost had two car accidents thanks to some snowbirds (Maine and another state that I couldn't tell what the tag was)  picked up some meds, was on the phone for an hour trying to deal with the company that we bought our tv from, worked out (HOPEFULLY) Selah's Tobymixion situation (by being on the phone with a local pharmacy & on the cell with the mail order pharmacy we are made to use)  sold 15 more of our old church chairs (while dealing with the pharmacies) cooked a good Italian meal, got ALL the laundry done, and helped a friend.   WHEW!  

I had several ideas for a blog tonight, but can't get my mind around it like I want to. 

Selah's situation with her medicine, Tobymixion, or Toby as we call it or the "miracle" drug.....is beyond frustrating.  I started on Dec 20th trying to get it sorted out so she could get it on time, which was Dec 27th.....then she got sick and the doctor ordered it EARLY (as in ON Monday Dec 23)....we still don't have it.   Since Jon is a state employee we have to go through Medco as our prescription plan.  They require that if a drug is one used monthly, it has to go through their mail order plan.  Well we had gotten this waived before but now they aren't considering the wavier since they have the Toby in a different category for a special medicine.   Problem is.....until today the orders were just sitting there.   It's not like you can go to a pharmacy and just sit down and wait until it all gets straightened out.  You have to call, and always get a different person who rarely cares.  Today one of the supervisors really helped us out.  She even called back and got a wavier so we could get Selah's medicine tomorrow  (couldn't get it in time today)  but if we had waited the earliest we could have gotten it delivered would have been Friday.  Selah is doing alright but she has a lot of mucus and is requiring a lot of suctioning.   The Toby keeps her trach/airway clean and dries her up.  It has made such a difference in her life since going on it late last April.  I just hope we don't have this big of a fight EVERY single month.  

The hardest thing about being a mom to special needs kids are the FIGHTS....and long waits on phones, in offices....   You have no idea until you've gone through something like we have lived for the past 10 years.   I never really thought about children/families with special needs until I had Sam but I guess if I did, I'd thought they would have all kinds of agencies to help & assist.  I don't mean just financially but emotionally and practically also.  I assumed when Sam was born/diagnosed .  I would have some guidance.....Oh I was so silly & na├»ve....  I had no idea what was ahead......  but I knew after Selah's accident ALL that was before me and it scared me so bad because I knew how hard it would be....  I remember being in the hospital in NY and just crying about leaving because I knew how hard it had been with Sam and how hard it would be with Selah.....unfortunately I have not been disappointed......

I don't know how parents who are young, uneducated or reluctant to deal with things handle ALL that is needed with a child with SNs.  It's a never ending fight....right now, for some reason Selah's trach covers didn't come with the supplies last week so she is down to just a couple.  Once they get mucus in them, they have to be changed out.  But they won't come till tomorrow.  Thankfully our nurse Rose really works the phone on a lot of these things and our nurse Aaron REALLY worked hard today calling and dealing with things for me.  He was so annoyed for us, I heard him talking to the one company and just about cracked up....he was more straight forward than me LOL!  But the nurses hate to see the ongoing fights we have JUST to take care of Selah. (and the other little ones)   We have a good insurance and prescription plan but it seems that our stuff is so specialized in falls into the 'cracks" of the system. 

So I have to admit, I am rather short tempered with people very easily. 

I look at all of the situations we deal with for the little ones, whether it is medical, medicine, nursing, diagnoses, school.....whatever it is.... and think back to when I worked as a probations officer/supervisor.  I DID my job and I did it without trying to make someone's life a mess and REMEMBER I was dealing with CRIMINALS, not little handicapped kids!  I can't imagine what I'd do if I were trying to help little people like my kids!  I'm not saying that because I'm so perfect but I would have loved trying to do things for families like ours', rather than the criminals LOL!  And even with them, I tried to get them the best help I could find and go the extra mile.    I think that is what makes me so furious is I look at our situations and see how easily it could be handled, so it all wouldn't be such a burden for me to deal with.  There is no reason Selah shouldn't have had her medicine at least a week ago.....  even with the waiver, I have to drive 2 hours round trip to get it for her and I am quite willing to do that but WHY does every freaking thing have to be so stinky hard??????  It's so overwhelming.....

Ok end of my whiny rant......

Well tomorrow night we have a little party planned at our house:)  It will be good to be with family and welcome in 2014....  Hope you all have a good day tomorrow and a fun time tomorrow night.  Please stay safe!!!!   I hope and pray that 2014 will be a great year for you and yours!



Sunday, December 29, 2013

New Year Resolutions

I've never been much for New Year Resolutions...BUT for 2014 I actually have some!



1. I will relax more with my family.  I tend to be very goal oriented.  My family...is NOT!  Not in the least bit and I feel like a fish trying to swim upstream most of the time which can make me quite short tempered with the ones I love the most.

2.  I will exercise some every day.  This coming from the girl who used to walk 5 miles a day, it is something I have to get back to on a more regular basis.

3.  I will take less crap from people.  (oh that's right I don't take much now, well it's going to get less LOL)

4.  NO FAST FOOD  (except pizza!)

5.  I will cook supper every night:) 

6.  If I don't like someone, I will absolutely refuse to be around them.  That sounds mean but life is just way too short to waste my time.   (and before I get nasty messages, I know that sounds unchristian but is it really?  I prefer to think it is HEALTHY for my spiritual and emotional life.  And if I don't like someone, being around them won't change that fact....  I've yet to START liking someone that I didn't like to begin with.  In fact, I usually dislike them MORE once I get to know them LOL!!  And btw, that doesn't mean I wish them evil or hate them, I just do not like them.  Let me love them from afar.....I can usually manage that!   LOL)

7.  YOLO - You only live once.

8.  Shad & I will read the bible through this year.

9.  I will throw Steve a rocking graduation party:)

10.  I will spend more time with my husband.  And treasure the time with my kids more!

Wow I have TEN New Year Resolutions!  I'm going to be very busy!!!!!

So do you have any New Year resolutions? 



Saturday, December 28, 2013

Saturday Shenanigans


Ok we are enjoying these kittens so much!  They act like they have always lived with us.  I'm a cat person, have had cats all my life but I have never had a kitten like these two.  They are extremely well behaved, totally litter box trained.  They play but they sleep good, if you touch them, they start purring.  Even my husband, who wasn't really thrilled with us getting kittens, can not believe how these two just fit right in.  they are adorable! they even don't mind the kennel and don't even try to get out when the door is open unless we call them out.   What good babies!

Today we cleaned out the laundry room as we needed to try and have more space in there for the kennel.  It's so big when everything is moved out....BUT then we had to move most everything back in and it becomes small again LOL

Sam decided to throw up breakfast. Jon had left for his bike ride and the kids were all outside and Shad came a-running to yell "Sam is throwing up"   It was pretty awful.  I am NOT the throw up parent in our home.  I almost joined in with Sam and that made him giggle to listen to me gag as I tried to get him undressed.  OUTSIDE.....thank God we live in Florida.  He hasn't been sick again and is acting like himself.  He had lots of mucus and doesn't know how to blow his nose or cough it up so we think the motion of the swing just caused him to lose his breakfast.   He got a shower and a nap and now has eaten chicken noodle soup and seems fine.  We hope so!

Selah is doing good, still a lot of mucus but everything else is fine.  STILL waiting on the Tobymixion.......   I get so mad!


One of my readers sent this to Selah's Facebook page
http://www.foxnews.com/story/2005/05/06/firefighter-miracle-recovery-rare-in-long-term-coma-cases/  this case happened in Buffalo NY, near Rochester.   When Selah was in the "rehab" we asked about another case like this and they did try her on one med then, it didn't seem to work.  It seems most of the cases like this I've read about  the patient is on a combo of drugs.  But you know what? This has given me hope again and I'm going to look into this.  Does anyone suggest a neurologist in the central Florida area who is someone who seems like he/she would be one to do some experimental treatment????    I've taken Selah  to the neuro that Sam has gone to for years, I like him but he would never try anything.  He doesn't give us any hope, not even in Sam's case.....  He was against HBOT.  But I am going to look into a new neuro so if you have any suggestions let me know!


Also another blog reader shared a BEAUTIFUL dream about Selah being healed.  And the Selah she described, was so much like the Selah we knew before the accident.  She is also from the NY area, we love our NY friends!  

So these two posts together have given me some HOPE for the new year!


A friend shared our Christmas card from 2004!   I saved it to share with you all.  Steve was 9 years old, Sam just 10 months old and me only 39 LOL  Jon was 41 with just a little grey hair!  The funny thing, I STILL have that black dress since I rarely wear it  My hair style hasn't changed much either  LOL  Sam has the funniest expression on his face.  We also dressed him as Santa and he was ticked off.  We have the cutest Mad Santa picture, I should scan it some day and put it on here. 


 
 
Hope you all are having a great weekend!  PLEASE pray that I can find a neuro that will work with us and Selah with new meds.....I can see that being a FIGHT!
 
 
 


Friday, December 27, 2013

We got KittenS!

Yes I am a crazy mama!   Shad asked for a kitten for Christmas so I turned to friends and a friend had a friend who had a friend who had some baby kittens that needed a home! 

So off we went today to get a kitten..... here is Shad with Daisy.....

 
and here is Princess....
 
We came home with TWO!




 
she has the cutest fat bottom:)
Baby got back!

 
 

 
 

 
 

 
 
 

 
 
oh they love to play

 
 
 
 

 
 
 

 
 
 
 

 
 
 

 
the kittens are so good natured, they fell asleep on our hour drive back home, all curled up together in the cat carrier.  Once we got home, they got out and started walking around, now both of them are asleep on the couch like they've been here for years:)  Thanks to the family who gave them to us!
 
Shad is thrilled!  He is very responsible, one of his chores is to feed our outdoor cats and dog and to lay down the dog's blanket every night.  He is pretty good with doing it without being told.  NOW he will be taking care of the kittens.  We have a huge kennel (for a giant dog) and I've put the litter box and food in it.  It's in our laundry room,  From now on it is his job to keep it clean.  He has asked for a kitten for over a year.  Things have been too crazy....and we have one poor nurse who is terrified of cats.  Luckily she usually only works nights so we'll but them in the cart while she is here.  Maybe they will be so cute she'll start liking cats!  But I think children should have pets.  Steve had his own cat for 13 yeas, it died a couple of years ago.  We have some outdoor cats but most don't want to be petted.
 
This was Shad's day I guess.  Jon & Shad did some target practice with his new BB guns.  He loves his guns:)   He had a classic "Daisy" rifle but got a hand gun and an "automatic"  (not really just looks like one) for Christmas.   He is such a country redneck Chinese:)   Even the food he loves, like RIBS and fried chicken just crack me up!  Chinese is ok to him....not his favorite at all:) 
 
 
 
 
 

 
 
 

 
 
 
 
========================================================
 
 
Selah is doing great, although her medicine is still NOT here!  I  HATE dealing with a mail order company.....being told I have to get her meds through them ONLY!  Thankfully the liquid antibodic and all the breathing treatments have helped her.  Her blood pressure and heart rate is back to normal also.  We may have to change her patch out every 6 days to avoid that instead of every 7 days.  But the good thing is we dont' give her the medicine Clondine except in the patch now for over 3 or 4 months!  We used to have to give it orally 3x a day and sometimes as  PRN also!  She has come a long way!
 
Sam has the sniffles and a cough.  Thankfully having a nurse here, I'm able to ask them to listen to his lungs and make sure there is nothing going on.  I didn't hear anything neither did the nurse.  I did give him some breathing treatments but no fever and he is eating fine and playing with toys:)  I just hate for him to feel sick!
 
Everyone else is doing good!  I had some coupons and some Beal's bucks so I took Steve to buy a few things today.  He hasn't ever really cared about clothes....but that is changing:)  FINALLY!
 
Sarah has been being more whiny and I LOVE it!  She wants to interact with us constantly, such a good thing emotionally!!!!!     She is all about being loved on now.  Really the past couple of weeks, I've seen this huge increase of her showing preference.  It is so good.  She used to be happy with being fed and held a little.  NOW she is all about wanting the attention all the time and will make a little "crying/moaning" noise, as soon as she is picked up she smiles.  She is learning that her needs and wants are being met when she asks.  It's great!
 
 
 

Thursday, December 26, 2013

The Day AFTER Christmas...

You know I have trouble with titles.....  this one will work!

So fun day for me, yearly checkup....some extra tests ordered.  I don't think the doctor is really concerned/worried, just being proactive. I have a wonderful doctor, she took the time to talk to me, really talk and even pray with me.  What a blessing.  I feel like I got some real doctoring today, body & soul:)  

The kids have been playing with their toys and having a good day.  Sam has some sniffles and a little cough....  Selah's heart rate is up and her blood pressure too but we think it's because her blood pressure patch had to be changed out today.  Most Thursdays this happens, but our nurse called our pediatrician to make sure things were still in range, cause she is a bit higher than usual but still ok.  The nurse was so impressed with our pediatrician:)  He's such a good guy and so helpful with our kids!

Tonight I think we are planning to do the great take backs....Jon bought me three PJ sets, but they are really thin material (not sexy thin, cheap thin)  they are cute but not something I'd use!  He also got me a neck massager that just vibrates and it made me nauseous!  He did good with Miss Kay's Cookbook and the Olive Garden gift certificate LOL  Also on the advice of Shad (really?) he bought me "Despicable Me 2"  well I had already bought it for Shad so one copy is going back....    We will see if we make it there tonight.

Hope you all are having a good day and relaxing if you have the chance!

Wednesday, December 25, 2013

Christmas pictures

 
the tree before a present was unwrapped!
 
Christmas Eve 2013 and Sam finds his Christmas Eve present
 

 
 

 
 
 

 
 
 

 
 
Sarah didn't quite get into the gifts





                                                     Oh but Sam LOVED Sarah's present LOL


 
 
 
 

 
Yeah Miss Kay's cookbook!
Now I'll know how to cook up squirrel LOL

 
 

 
Broke LOL

 
Sam loves his bubba

 
 
 

 
 
 

 
 
 

 
 
Christmas morning 2013
 

 
 
 
 
 
 
 
 

 
Look at Sam unwrapping his own present!

 
 

 
Lego Man!

 
Steve took the blanket off his big present
 
 





 
 
 

 
 
then we went and opened Selah's presents
she got clothes, Pj's, some toys and a big pillow chair

 
 

 
 
 

 
 
 

 
 
Selah and Daddy

 
 
I don't know if you can see the pink back  vibrator  Sarah is holding.  When we first gave it to her, she got scared and almost cried.  Then she held it and put it on her face and arms.  She played with it all day and wore the batteries out!  And the CRAZY thing, she absolutely was so still in her body.  Very little doing her hand motions and her body was STILL.  She sat with me on the couch at our friends house and she was still....it's hard to explain if you don't know Sarah but I think this toy with the motion is giving her some input that will help her to relax.  It was like $4 at Walmart, I think I'll buy the store out tomorrow! 

 
 

 
 
 

 
 
 

 
Selah on her new pillow chair with some of her new toys and blankets and outfit:)

 
the girls have matching outfits, Sarah in green and Selah in red
 
 

 
 

 
 
Our family!

 
 
 
 








 
 
 
Jon and his dad. 

 
 
Jon and his brothers with their dad
 
 

 
Some more of the family

 
 
 
I wish I'd taken some more pictures today but it was a good day. 
 
This was my FB post today to my friends & family and I'll share it with you also....
 
Hope everyone had a Merry Christmas. I am very thankful that we were all together and that Selah is NOT in the hospital today. We had a good day, the kids all loved their presents, got to see all of Jon's family and have a great dinner out with some dear friends. I'm thankful to be home for Christmas this year and to have this past year of learning about our new "normal" almost over..... tonight a poignant memory of Selah almost overwhelmed my heart. It's been a rough year but God has been the Faithful One to us. "Fear Not....a Savior is born...." Thanking God for that Savior who saves us from our sins and from life when it seems to overwhelm us........
 
 
My heart was a little broken today a few times, the tears welled up but I was able to keep them in.    I just wish things were different and imagining how it could be.  Selah never got to have a Christmas with us before the accident happened.  In all my gratefulness, for all we have I just wished I had my little girl back with us completely.  That's what was on my mind today as we went about our day.  It was a good day, but a piece of my heart was hurting for the little one who stayed home with our wonderful nurse.  Having the other four children makes me HAVE to go on with life on some level.  But it hurts.....sometimes the smile is forced.  I'll never quit asking for prayer for Selah so I'll ask again tonight....pray that our little girl is restored back to us.  Thank you.