Our world.. in so many words..

once again i have gone way too long since my last post..
i dont know why i do that
i enjoy blogging..
life happens and somehow it gets set aside,

So many things happening..
i honestly dont even know where to start.

We are living in upstate NY now.. did i already post that? im not sure where i even left off last time.

The kids are well.. amazing actually. Kiras health has been outstanding since her surgery 2 winters ago and JJ is our little monster.. literally! 3 years old and NEVER runs out of energy but he is a ham for sure and always keeps us on our toes. Kira is 11 and certainly taking advantage of all the pre-teen junk. Overall she is fantastic.. but lord help us make it through the teenage years! Coming to New York state has been a blessing in so many ways. Number one on that list would be Kira in school. From Florida, to Pennsylvania, and now NY.. it feels like a different world when we speak of education. Kira has always had some slight problems in school but was always passed through or overlooked because she passed all of the required standardized testing given. Within 6 months of being here, Kira was diagnosed learning disabled and now has an active IEP. It is amazing what gets done when you find people that care, and we have already seen a world of difference in school.

Materialistically (is that really a word??) i have less than i have ever had but i am happier than i have ever been. My heart is so full of love that sometimes i cant even express it. I think that is part of the reason i have felt the need to blog so strongly lately.. its a feeling that i feel the need to share with the world. Facebook is great for quick bouts of expression, but sometimes you just need more than that.

i am so lucky, so blessed, and so greatful for all things in my life today. The good and the bad, because without that bad, i wouldnt fully appreciate the good, and let me tell you.. the good is simply amazing.

Healthy children.. and i start and end every day with the most beautiful girl in the world… who could ask for more?

hopefully posts from now on will be more often than not..

find us on facebook if you havent already 🙂 … http://www.facebook.com/itsjustjillie

i think this is the longest i’ve gone since i started blogging..

i need to start again..

makeover coming soon.. lots to update

i dont even know where to start..

i guess i’ll go in order..

the same week the repo man came to take my car, tim lost his job.. got fired i should say, for being stupid.. now i am not working yet because i was supposed to be going back to school.. and really i was in the process of finding a good daycare for jj, and looking for a job, and blah blah blah.. i didnt do it quick enough and yes, it is my damn fault for letting him be the only one to work, and trusting that he would take care of things.. NO.. we are not together.. but we had talked and things WERE going good with us living together so as long as it was working i was going to stay home with jj, and finish school, and we would take it from there.. well, as soon as things started not going so well, i started the job/daycare process.. but like i said, i didnt do it quick enough.. my fault.. ill take that blame.. so needless to say, that job that he lost was the ONLY source of income.. yea.. not good. .. there are so many more details that go with this that would make the story make sense.. but i dont have the energy to put it all out there right now..

and it seems it has been down-hill from there..

jj got sick.. major ear infection and was in the ER not once, but twice because he had an allergic reaction to the amoxicillin that they gave him for the ear infections.. we got him on zithromax, and luckily he got better..

2 days after jj’s second trip to the ER, kira woke up at 130 am SCREAMING bloody MURDER that her ear hurt.. im not kidding.. i thought someone broke into the house and was stabbing her…. back to the ER.. it was friday night.. there was no way i was waiting till monday to take her to the doctor. so.. the ER says she has an ear infection that is so bad that they cant get drops in, but sent her home with a z-pack and said that would take care of it..**this should have been a red flag for me.. again.. dumb on my part.. but i’ll deal with that later** she had also been complaining of her neck hurting.. they took an x-ray and said they saw nothing..

fast forward 24 hours on antibiotics and pain killers later.. sill screaming in pain.. neck now so swollen she cant move it.. i called robby and said “i think we have one more er visit in us”.. so he came and brought us back to the hospital… before i left, i looked up her symptoms and i was already pretty positive of what she had, so going in, i demanded they do a CT scan rather than an x-ray.. blood work showed her white blood cells at 22, 000.. (VERY HIGH). and the CT scan showed, what i had expected, mastoiditis.. and infection in the mastoid process.. a honey comb like part of the skull behind the ear.. IV antibiotics can sometimes take care of this, but it most always needs surgery.  They started kira on antibiotics while they arranged the ambulance to the childrens hospital, about an hour away in pittsburgh..

she of course had an allergic reaction to the vancomyccin (sp?).. but luckily we were in the hospital so they took care of that..  16 hours and 10,000mg of antibiotics later, we are finally admitted into the hospital for what i didnt know at the time would be the LONGEST and SCARIEST week of our lives..

TEAMS of doctors were pouring in.. poking, prying.. the ENT team, the Infectious disease team.. later the Neurosurgery team (reading that on the coats as they walked in scared the shit out of me).. anyway.. they put kira on morphine for pain.. this drug turns her into DEVIL child!.. i can not even explain to you.. she was a totally different child then i have ever known.. and it wasnt because she was in pain.. kira+morphine.. NOT GOOD!.. but it was taking away her pain, and they said that it was the only thing that would..

surgery number one.. tubes to drain her ear.. this is a very simple surgery that kids get ALL the time.. the only concerns were because she has asthma and had a slight cold.. so they said the anesthesia might make her breathing funny..but it was nothing to worry about, and we were in good hands.. and we were.. everything went fine.. and we were told that they would give the antibiotics 2 days to try and take care of the infection before they did a second, much more complicated surgery. this was tuesday mid-morning.

for the rest of tuesday, kira slept a lot, ate a little, and was still in great amounts of pain..

4am wednesday, NPO orders were put back on (no food or drink).. this scared me because i knew at that point they were going to do the second surgery, but i was confused because i thought they were waiting until thursday to give the antibiotics a chance, and she only has to not eat or drink for 12 hours before the surgery… 7am the ENT came in and told me that they didnt like the way the swelling was not only not getting any better, but was actually getting a lot worse, and moving down around the front of her throat, and that they would be doing another CT scan, and definitely the second surgery

MASTOIDECTOMY.. removal of part of the mastoid process.. basically they were going to cut her open behind the ear and drill out the infected portion of the bone..

i am trying desperately at this point to hold it together.. as of wednesday, i had been at the hospital alone with kira since saturday night.. remember we have no car so tim is an hour away with jj.. and no way to get up there. mom and dad are in florida.. i am ready to LOSE it.. but pulled up everything i had to keep it together for kira who was PETRIFIED just from the very little she overheard the doctors saying. dont get me wrong.. the doctors, surgeons and nurses at this hospital were AMAZING at comforting and explaining everything the best they can.. but its still scary for her.

mom had had enough of being so far away at this point also and booked a ticked to come up thursday morning.. (mom is coming.. thank GOD, i think to myself).. and when everyone heard that she was going to have this surgery, a small army of people came up to the hospital wednesday afternoon to visit, and support, and keep kiras mind off the surgery that we knew was coming at some point that day.. i took this opportunity while they were in the room to go outside for a good 15 minutes and virtually LOSE everything i was “holding together”.. i am so thankful for them..

at this point we are all just kind of hanging out in the room.. kiras and her friends coloring, watching tv.. and kind of forgetting they were in a hospital.. this was so good for her…

well.. this is when the white coats walked in with “NEUROSURGERY” embroidered on them to give us the results of the CT scan that was done earlier.. my heart has never dropped so far, or so fast. everyone just got quiet and listened..  the infection was not only in the mastoid bone, but was now between a plate of the skull, and her brain.. and had to be removed while they were doing the mastoidectomy.. surgery was scheduled for 7..

i left the room and made all the “update calls”.. and started to pray.. yes, i actually prayed.. my babygirl has an infection on her brain and is about to be operated on.. how the hell did this happen? My ballerina..  it was literally a battle with the positive and negative thoughts zipping through my head.

7 came and went and they finally called up for her around 830..
they let EVERYONE walk her down to the OR and stay with her until she was ready to be put under..

the walk to the or was long.. but i looked around as we walked.. tim walking beside kiras bed holding one hand.. kiras friend miranda on the other side.. jenny, felicity, and mirandas sister mikayla right behind..then lindie.. miranda and mikaylas mom, and robby holding jj.. and me… a small village of big love..

3 hours later the surgeon walked into the waiting room.. “everything went great”…. no three words have ever made me so happy.. happy isnt even the right word.. it was like someone had been strangling me and the attacker just let go of my neck..

they were able to get all the infection out and said that its just a matter of healing and continued antibiotics now..

kira did NOT like waking up from anesthesia.. she was in a lot of pain, and very confused, as im sure anyone would be..

wednesday night went well.. kira slept pretty good because she had so much in her from the surgery.. she was pretty close to pain free.

thursday came.. it was back to just kira and i .. and mom was on her way.. we were both very happy about this..

thursday morning the infectious disease team came in to let us know that the cultures taken from the tubes surgery had grown staph. it was good that the infection had at this point been removed, and they were waiting to find out the exact strain to decide what antibiotic to keep her on.

turns out it was MSSA, not MRSA.. the difference is that second letter…. S is sensitive to antibiotics.. R is resistant.. so this was very good news..

so.. they put her on Levaquin (good stuff)  and said that she will need to go get a picc line in (more permanent type of IV) to come home with because she would be on it for a minimum of another 5 weeks. no gym, no dance, pretty much nothing to make her blood pressure go up as long as the picc line is in.. but compared to the alternative, we’ll take it..

the next four days were just making sure swelling was going down and she was taking to the antibiotics well..

monday we were released and finally came home.

its been almost two weeks since we have been home and all is going well.. every morning at 730 i hook up her IV and she sits for an hour, getting the lovely liquid that is saving her life..

she loves to tell people that the doctors sewed her ear back on, and she cant wait for the stitches to dissolve so she doesnt have to feel them anymore. Kira also loves the fact that she gets to wear tube socks over her arm to cover the picc line..we got lots of pretty colors : )

Kira is a trooper.. in 9 years, she has been through more than i have in the 28 years i have been on this earth.

as soon as she is well and off the antibiotics, the Doctors want to start some studies to figure out why she is so prone to infection.. so we will cross that bridge when we get to it.

march 3rd is her follow up where we will find out exactly how much longer she will be on the meds, and how much hearing was lost in the ear.. i’ll keep you posted..

i also need to say that i could NOT have been so strong for my little girl if it wasnt for all the thoughts, prayers, and support from my friends from all over this country.. i am SUCH a lucky girl to have all of you…. you have no idea how much you mean to me.

my arms are numb.. i’ll hit on the rest of the subjects in the title tomorrow….

xo

i have such a blog i need to get out… and its stuck!..

**sigh**

Have you ever loved somebody so much
It makes you cry
Have you ever needed something so bad
You can’t sleep at night
Have you ever tried to find the words
But they don’t come out right
Have you ever, have you ever

Have you ever been in love
Been in love so bad
You’d do anything to make them understand
Have you ever had someone steal your heart away
You’d give anything to make them feel the same
Have you ever searched for words to get you in their heart
But you don’t know what to say
And you don’t know where to start
[Chorus]

Have you ever found the one
You’ve dreamed of all of your life
You’d do just about anything to look into their eyes
Have you finally found the one you’ve given your heart to
Only to find that one won’t give their heart to you
Have you ever closed your eyes and
Dreamed that they were there
And all you can do is wait for the day when they will care
[Chorus]

What do I gotta do to get you in my arms baby
What do I gotta say to get to your heart
To make you understand how I need you next to me
Gotta get you in my world
‘Cuz baby I can’t sleep
[Chorus]

Each time you tell my daughter to shut up I care a little bit less about the financial mess I’d be in if you left right this second…

Each time you talk down to me, or look at me like I’m a piece of shit, my hatred for you grows..

Each time you are a complete asshole just because things don’t go your way, it makes it easier not to care if you can make it on your own or not

Each time you choose to scream and yell instead of talking to me like a human being, it makes me want to get as far away from you as I possibly can

Each time I see your children look at you with so much love and admiration, I pray that they aren’t too badly hurt when they find out what you are really all about..

How would you like it if somebody treated YOUR daughter like this??

A Message by George Carlin:

The paradox of our time in history is that we have taller buildings but shorter tempers, wider Freeways , but narrower viewpoints.. We spend more, but have less, we buy more, but enjoy less. We have bigger houses and smaller families, more conveniences, but less time. We have more degrees but less sense, more knowledge, but less judgment, more experts, yet more problems, more medicine, but less wellness.

We drink too much, smoke too much, spend too recklessly, laugh too little, drive too fast, get too angry, stay up too late, get up too tired, read too little, watch TV too much, and pray too seldom.

We have multiplied our possessions, but reduced our values. We talk too much, love too seldom, and hate too often.

We’ve learned how to make a living, but not a life. We’ve added years to life not life to years. We’ve been all the way to the moon and back, but have trouble crossing the street to meet a new neighbor. We conquered outer space but not inner space. We’ve done larger things, but not better things.

We’ve cleaned up the air, but polluted the soul. We’ve conquered the atom, but not our prejudice. We write more, but learn less. We plan more, but accomplish less. We’ve learned to rush, but not to wait. We build more computers to hold more information, to produce more copies than ever, but we communicate less and less.

These are the times of fast foods and slow digestion, big men and small character, steep profits and shallow relationships. These are the days of two incomes but more divorce, fancier houses, but broken homes. These are days of quick trips, disposable diapers, throwaway morality, one night stands, overweight bodies, and pills that do everything from cheer, to quiet, to kill. It is a time when there is much in the showroom window and nothing in the stockroom. A time when technology can bring this letter to you, and a time when you can choose either to share this insight, or to just hit delete…

Remember; spend some time with your loved ones, because they are not going to be around forever.

Remember, say a kind word to someone who looks up to you in awe, because that little person soon will grow up and leave your side.

Remember, to give a warm hug to the one next to you, because that is the only treasure you can give with your heart and it doesn’t cost a cent.

Remember, to say, ‘I love you’ to your partner and your loved ones, but most of all mean it. An embrace will mend hurt when it comes from deep inside of you.

Remember to hold hands and cherish the moment for someday that person will not be there again.

Give time to love, give time to speak! And give time to share the precious thoughts in your mind.

AND ALWAYS REMEMBER:

Life is not measured by the number of breaths we take, but by the moments that take our breath away. 

                   George Carlin 

imagine living your life, asking yourself this question before you did anything? … “im going to go to the store, whats the WORST that could happen?”… the WORST that could happen is you could get hit by a bus and die.. or your car could slide off the icey bridge, and into the river below.. why on earth would someone want to think like that? what if we always thought “whats the BEST that could happen?” would we be setting ourselves up for a lifetime of disappointments?.. maybe.. but look at the quality of life you would have..

it is one thing to be cautious, smart, and make good decisions.. but to always think of the worst and base a decision off of that is absolutely crazy to me.. life is short.. lighten up.. live a little..

so i didnt send christmas cards this year, ugh!….

total craziness… maybe ill send some out for new years..

anyway….i hope you all have wonderful holidays, full of love, laughter, and lots of magic..

 

xoxo

i found some old journals today..
the last entry about a year ago..
the memories in these books are amazing. I am so glad i took the chance to write these things down..
I was told once to look at memories with a lost love as happy to have had them.. instead of sad to not have any more…im trying.

i wonder daily if the move to pa was a mistake or not..

i miss my family more than i EVER thought i would..

i dont know if its the holiday season or what, but a day without tears is impossible these days

i have ruined a friendship, and im not sure it will ever be the same.. this may be one thing that time can not heal…you may not believe me but i am sorry

ok.. happy thoughts people… lets see..
the kids.. i’ll update you on them..

KIKI..
in her own words “i miss florida!!!”..
dont let her fool you.. she doesnt miss florida.. she misses the family that is in florida..
i’ll tell you, she is the happiest she has been in the 9 years she has been alive.. she LOVES dance and all the new friends she is making.. she loves school and all her teachers, (although her grades are something else all in itself..im working on that)..
Kira continues to be an amazing big sister, and aside from her mouth, she is a great kid.. i am lucky

JJ
well, in 2 days, JJ will be 18 months old.. i can not believe how quick its going.. he is still crazy as ever, climbs on everything, rarely runs out of energy, and doesnt sit for a second.. his latest adventure was learning to climb OVER the baby gates… yes, i said climb over the baby gates.. puts his toes in the slats, and up and over he goes..
He loves books, and that is actually the only time he will sit for 10 minutes, if i read to him..
jj’s favorite thing to do is go outside.. he doesnt care if its 90 or -20.. pouring rain, or hailing.. he wants to be outside.. he will run and run.. kicking balls, looking for rocks and bugs, smelling flowers, eating grass.. he is a total boy.
At our trip to the ER on thanksgiving he weighed in at 27lbs and was 34 inches tall.. he is tall and skinny.. going to be built just like his father. He will say anything you say.. the other day he was walking around the house saying “shit shit shit”.. yes.. time to watch my mouth. as crazy as jj is though, he is my total snuggle bug.. he wants to hug everything and everyone, and is always giving kisses

and speaking of my little monster, he wants my attention

will try to update more often