A Review of 2013

It's a nice cool rainy day in Florida.  This is my favorite kind of day, a light misty rain falling, all my family together, what can be better?

Thinking back over 2013, brings many emotions.  This time last year, Selah was still in the "rehab" in Jacksonville and we were coming home on the weekends to redo our house and get it ready for Selah to be moved it.  It was a very stressful time in our lives.  She wasn't doing good, we couldn't get nursing set up for her, we were so tired of being away from home (be it ever so humble, there's no place like home) and we had other considerations like our church and Jon's job at the prison, and the kids' schooling! 

 

Last January, Selah still in the hospital and the other kids on a stop to eat on our trips home and back

It took until the end of January and many phone calls to get Selah transferred home, finally on Jan 28th we came home.....then she was in & out of the hospital from that point on with trach infections.  Until she was started on the Tobramycin  at the end of April.  She also had foot surgery and was in casts for a month during that time. 



HOME







From April on she has been home, we've done everything we could to have therapy for her on almost a daily basis.  Then from June-August we had the BIG nursing/Blue Cross fight.... at the same time she started her first HBOT treatments.  It's been a busy year learning all the things that we need to do and have in place for our girl to live at home with us.

 

 

 

MY GIRL!

 

 

 

 

  

 This past year has been a big year for Sarah.  She has grown and made so many strides by gaining some independence in learning how to use a walker.  Sarah has come so far in every area!  She learned how to drink from a straw and she's learned how to whine so Mama will pick her up:)   She said Mama, ONE time for me:)  She has grown close to us and totally knows she is our girl!

 

 

 

 

 

 

 

Sam has had a year of change that he has dealt with and he has learned a lot of things this year too.  He stopped using a high chair and sits with us at the table. He started using the potty some. He has grown up in many ways.  It's hard to believe he will soon be 10 years old!

 

 

 

 

Shad is such a "go with the flow" person that he just transitioned from the Ronald McDonald House, to the hotel, back to home....with no problems.  He loves being back at school and with his friends.  With just half of the school year behind him, Shad is almost through with all his 4th grade work and soon will be starting on 5th grade work! 



















Steve turned 18 years old, got his driver's license and is almost done with his schoolwork for 12th grade!  He's taken back up jogging and plans on doing more triathlons.   It's amazing to see your child become an adult!

 

 

 

 

 

 

 

Jon just got his 15 year pin for working for the Department of Corrections (lol I think they are behind a year or so!)  He loves his job there and is so satisfied.  Our church is growing by leaps and bounds!  After all these years (the first Sunday in January is his EIGHTH year of being here as pastor) we've sown a lot of blood, sweat and tears....what a blessing to see fruit coming forth!  It's exciting & humbling to see how God has grown our congregation.  Everyone has a sweet spirit, they all have a unity, it's really something to see.  Our church is so different than it was at the start of 2013.  Back then, we'd been gone for almost 6 months, we didn't know how we would "do our life" once we got back home.  We had a few people leave our church and THEN....it was like a floodgate opened up and God brought new families in with the same vision that we have.  Not many from other churches, some just moved to the area, some just started back attending church...it's been crazy to watch God do it.  It was our efforts, no big new "plan" to make something happen, and I can assure you it wasn't our faith or deep prayers, we were just hanging on dealing with our own personal life BUT God....    I LOVE that!  Everyone has "plans, vision statements, new programs, various things to MAKE church growth happen but I am so thankful that God "added to the church". We can't even claim credit!  I'm excited  to see what is ahead!

So although 2013 was a year filled with challenges, God was faithful to us. I close with this story I borrowed from my friend David.....

He who trusts in the LORD will be exalted.
Proverbs 29:25

In September 1939, Great Britain allied with France and several other alarmed countries in declaring war on Hitler's Germany, which had invaded Poland in its intended march toward global domination. By the end of the year, anxieties throughout England remained on high alert; everyone was fearful of bombing and invasion.

When King George V...I sat down before two large microphones to make his Christmas Day speech to the nation, he was dressed in his official uniform as Admiral of the Fleet. With so many parts of the world facing an uncertain future, his goal was to reassure the people that their nation was prepared and able and their cause right and just.

"A new year is at hand," the king said. "We cannot tell what it will bring. If it brings peace, how thankful we shall all be. If it brings us continued struggle, we shall remain undaunted."

Then, turning to some lines of poetry his wife had recently shared with him, he concluded his speech with these words, which are a fitting close to our year together. They offer a word of encouragement that--we hope--will settle your hearts amid the troubles of our own era in history. These lines are from "The Gate of the Year," a poem written in 1908 by Minnie Louise Haskins:

I said to the man who stood at the gate of the year
"Give me a light that I may tread safely into the unknown."
And he replied, "Go into the darkness and put your hand into the hand of God
That shall be to you better than light and safer than a known way.

 

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This is the best advice I can give, standing at the beginning of a new year filled with uncertainties....

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!!!!!!

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 & naïve....  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!

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 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!

 

 

 



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:) 

 

 

 

 

 

 

 

 

 

 

 

 

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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!

 

 

 

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!