Baby Boy Knows How To Share ALREADY!

He has shared his NASTY cold with me.

Thank you so much J.

I am so congested that I woke up at 3 am feeling like someone had shoved something in my nasal passages. I could not breathe out of my nose at all. The harder I tried the more I sounded like Jim Carey in that scene from Me, Myself and Irene after his nose was broken. You remember the whistle. I tried to youtube that scene for you but can't find it.

ugh

I am thankful that Makily has not caught it though and J is MUCH better today.

So I am doing nasal spray and Motrin today. Of course I get sick the weekend before we are "re-inspected" for the renewal of our foster license. We are trying to "spring clean" this weekend and re-organize.......and I get sick.

I have impeccable timing.

I would rather lay in bed pumped full of Nyquil with a smile on my face.

sigh

Pray Makily does not catch this.

I am a Frozen Prune.

Baby boy is sick.

He has been spiking HIGH temps and he had a dr visit yesterday.

He wants to be snuggled which is fine by me but he is really running hot.

I am giving him Tylenol/Motrin every four hours. It's helping some.

He insisted on taking about six showers today. I tried putting him in the tub and it was a no go, he would only tolerate a shower with me holding him. He would just lay there on me with the water running over us.

So I sat in the FREEZING shower with the little turd half the day.

He has not napped or slept well so I am TIRED.

Hopefully tomorrow will be better for all of us.

One of the many reasons I am a total lunatic.

Since Makily was born I have to deal with pharmacies WAY more than I ever wanted to.

For the most part, they make me want to run amok, screaming naked and banging a pot. So far I have had the sanity to resist this urge.

One time I was having such a hard time JUST GETTING MAKILY'S reflux medication. Her stomach acids WERE OUT OF CONTROL and so her G tube was LEAKING LIKE A FAUCET. I am talking bile, stomach acid just pouring from under her button.

GOOD TIMES.

I had argued with the doctors office and pharmacy over the phone so much that I finally went DOWN to the pharmacy with Makily in tow. She looked like she had stuck her finger in a light socket as I had not even touched her hair that morning. I was still in pajamas with my hair tied in a knot on top of my head. See we had been up all night with a leaking PAINFUL G tube site because the drs, pharmacy and insurance company could not get it together enough to GET US SOME DAMN MEDICINE.

So we went into the pharmacy and I argued with the tech at the counter. Makily all the while is screeching and miserable on my hip. I got sick of fighting with the idiot at the counter so I pulled Makily's shirt up to reveal her leaking g tube and the SOAKED gauze. The area was FIRE RED and a MESS. I said "THIS IS WHAT SHE IS HAVING TO DEAL WITH BECAUSE YOU WON'T GIVE ME HER FREAKING MEDICATION"!!!!

Drastic, yes I know, but I was sleep deprived and tired...and my baby was in pain.

After showing them Makily's horrific looking painful tummy they gave me enough meds to get her through the week until they could get it together.

Thanks, wish you would have done that a week ago before I came in here and made a scene.

ANYWAY!

Last month I started having another issue.

The powers that be in Florida decided that it would be a good idea to have ALL of Florida Walgreens pharmacy phone calls to be routed to a "call center" (answering service) in Orlando.

WHAT A FREAKING STUPID IDEA.

It took me two phone calls to realize that I wasn't talking to the actual store. I only figured it out because she asked where I wanted my script transferred and when I said "oh the one on 40 next to K-mart" and she said "I don't know where that is".

Then she went on to tell me that they were out of stock of my medication which was weird because it's common and this has never happened before.

I was rather irritated so I called the pharmacy again, demanded to speak to the PHARMACIST IN OCALA and finally got her. She apologized, said that they in the store ALSO hated this new policy and that the next time I called to ask for the pharmacy directly and tell them I WOULD NOT AND COULD NOT speak with Orlando. She said my script had been ready and waiting for TWO DAYS, and she does not know why Orlando said they were out of stock.

*sigh*

Well this is what happened this month when I called to make sure my meds were ready.

I was already annoyed because I KNEW I was going to get the LAME call center in ANOTHER CITY! So when I called I pressed the button for the photo lab....waited on hold forever just for the automated system to say "that extension is not available please hold for the next available extension"

sigh

Finally this guy picks up. I explain that when I called last month the pharmacist explicitly told me that the next time I call, ask for customer service and tell them I DO NOT want to talk to the Orlando call center and to PLEASE carry the phone back to the pharmacy.

The guys says "ma'am all I can do is transfer you into the callrx system".

*sigh...*

I then VERY FIRMLY explained that I DID NOT WANT to talk to the idiots in Orlando and to either GET ME THE MANAGER or walk the phone BACK to pharmacy.

With that he put me on hold and then transferred me to the callrx line where I got none other than the Orlando call center.

*I think my head almost flew off my body at this point*

I calm myself enough to ask the call center if they see my script is ready or not.

That guy tells me "no I have nothing for you".

SIGH

I did not trust the info he was giving me after last month's fiasco.

So I call Walgreens back and push the stupid button for customer service AGAIN.

I get a girl this time, I tell her I WANT THE MANAGER. She says to hold and I do for what felt like five years. Then the line starts ringing again and she answers and says:

"cosmetics how can I help you"

*My head DID fly off then*

I said:

"I'VE BEEN HOLDING ALL THIS TIME FOR THE MANAGER, NO ONE IS PICKING UP THE PHONE"!!!!!!!!

So she says "oh hold on..."

I cut her off and said "PLEASE don't put me back on hold, I've been sitting here forever".

She tells me she isn't putting me on hold that she is going to go get the manager herself...then she puts me on hold.

*while on hold this time I decided to curl up in the fetal position in a corner and rock back and forth while sucking my thumb*

FINALLY the manager gets on the phone and I VERY FIRMLY explain what I was trying to do, what the other guy had done and THAT I JUST WANTED TO TALK TO THE PHARMACY IN OCALA...NOT ORLANDO!!!

He does not apologize.

I got no sympathy.

What did he say?

My favorite phrase of course:

HOLD ON.

SURE I MEAN I HAVE BEEN ON THE FREAKING PHONE FOR AN HOUR NOW TRYING TO DO SOMETHING THAT SHOULD TAKE FIVE MINUTES BUT HECK I'LL HOLD SOME MORE.

This time I hear everything as he didn't click the hold button (I had told him not to put me on hold so I guess he figured if he didn't push the hold button I would be thrilled) so it sounded like the phone was flushed down the toilet, dropped and then put through a wind tunnel.

FINALLY the pharmacist picks up, asks for my name and says:

"Yes ma'am it's here and you have three refills"

To which I say:

"Are you sure Orlando says there is nothing there".

His reply:

"They don't know what they are talking about, I'm so sorry ma'am. Next time don't talk to them just ask for us directly"

I DID THAT!!!

I didn't say anything else except thanks but seriously that was SO RIDICULOUS.

Walgreens really needs to knock this off or I am going to go bald.


****On another note****

PLEASE say prayers for my friend Stephanie, her daughter Maia and their family. Maia is 13 w/ES like Makily and they are having some really horrible problems with her lately. Maia has unexplained and seemingly untreatable screaming rage and anger issues. This started THREE years ago and they have tried EVERYTHING to help her. The entire family is exhausted both mentally and physically. Stephanie and Martin are being forced to make INCREDIBLY impossible and heart wrenching decisions. My heart goes out to them.

Please visit their blog and offer them words of encouragement and POSITIVE thoughts during this trying time.

Stephanie's blog for Maia click me

Maia we love you honey and we all so desperately want you to feel better.

Stephanie, I am here for you day or night. My heart is with you right now.

Surgery DONE, Baby Girl is doing AMAZING.

I am soooo grateful you guys!

That was the quickest and EASIEST surgery EVER!

We got up at 3 AM, in Orlando by six. We were headed home BY NOON!

She did awesome, there was no need to intubate this time. They just placed an LMA and she did fine with that.

SHE IS GETTING SO BIG, it seems like she *may* be outgrowing her airway problems.

The hearing screen was "close to normal". Won't know the full results for a few weeks. I am not concerned about it in the least. Ear tubes went in without a hitch. He used Titanium tubes this time so they will last longer. He said her eardrums were "retracted with some fluid" and he cleaned it all out and things look great!

Here is a video and pics of today.

Make video montages at www.OneTrueMedia.com

**btw thanks Michelle, last video I tried to post that didnt work WAS because I didnt embed it in the html mode. I am a dork. Thanks for your help!**

Thanks for all the prayers, they worked. My baby is doing great!

Momsicle.

Not long after I blogged last night I went in to see why J kept talking to himself.

When I picked him up he was BURNING up hot.

I checked his temp and it was 104.7.

I stripped him down, gave him Motrin and threw him in a cool bath. He played in the tub really well, I can't believe his temp was that high and he was playing. He did keep "talking" so maybe he was hallucinating fun things?! Every now and then he would try to get out (it was cool and not warm like he is used to).

His temp went down to 102 and he fell asleep so I laid him back down.

At five am I heard him "talking" again.

This time he was 103.7.

sigh

He must have remembered the "cool bath" from earlier because he started crying when I put him in the tub. He would not calm down so I got him out. I sat on the couch with him and his eyes started looking all freaky. I got nervous about him possibly having a febrile seizure so I decided to sit with him in a cold shower.

For some reason this was okay with him but he wouldnt let me put him down. He also peed on me and I learned that a baby with a fever of 103+ has MOLTEN LAVA HOT PEE. I guess he figured if he had to be cold and suffering, someone was going to suffer with him. After about the first 10 minutes he was crawling all over the shower and splashing.

I on the other hand I was a shivering Momsicle (I am going to patent this word I think, moog needs to tell me how ;-).

He has ran a fever all day long on and off. I know this is from the FIVE shots he got yesterday. I would have delayed a few of them if I had the choice but I really can't make that decision since he is a foster kid.

We're alternating Tylenol and Motrin but he has been a CRAB all day long.

I just hope that he is better in the morning because having one going in for surgery and then other temping like that IS NO FUN FOR THIS MOMSICLE.

It's still freezing here too guys. I hate the cold weather.

We are getting up in the morning around 3 am to be at APH by 6:15 AM. Does that sound like FUN or what?

Please pray that all goes well with Makily's surgery and that we are home by tomorrow afternoon. As always even though this is a simple surgery, I am starting to get nervous.

sigh

Wonder if I will ever get used to this?

Surgery Friday and stuff......

So yes it's that time, Makily's getting ear tubes on Friday morning. They will also do the ABR (auditory brain response hearing screen).

Typically we ALWAYS stay over night in Orlando but I *think* this time we may actually try and head home Friday afternoon if all is well. I am sure it will all be just fine. If she has ANY troubles whatsoever coming out of anesthesia we will likely stay over night in a hotel . The last time she only had tubes done she was totally fine right afterwards.

It's FLIPPING COLD HERE!

I swear I need to move to Florida where it's warm right?

Yesterday morning driving Makily to school, the temperature thingie said 27 degrees....IS THAT POSSIBLE? Obviously it is but I do not appreciate it one bit. It's soooo darn cold my feet are DRIED OUT and cracking. One is so bad I am limping on it. Ouch.

You know you all wanted to know about my crusty, cracked feet.

J got FIVE shots today.

ugh.

He usually does REALLY well but this time he SCREAMED bloody murder. I have watched his temp and it's been okay (with Motrin/Tylenol) but right now it's 11:48pm and he is in his room talking to himself. That's not like him, usually he sleeps from 7pm to 6am (yes and I love it thank you very much, don't hate, Makily screamed the first six months of her life and never slept so I feel like J's good sleeping habits are God's "sorry bout that" to me LOLOL).

I am proud to say I have been able to stay with my resolve to "let go and let God" as far as J's case is concerned. I have already seen HUGE positive things happening since I finally was able to do this. Other than God dropping an anvil on my head to show me he wants me to BUTT OUT, I am not sure what else he could do. It's all good stuff. That does not mean that something can't go terribly wrong or change as we have seen MANY times in the past several months. I intend on enjoying the positive now and trusting when and if the negative occurs.

More fun posts tomorrow.....I think .

I Confess....

*I Confess that I have a Mountain of laundry that is nearly as high as my house. I just separated it into piles.

Pile One: Towels (We have an UNGODLY AMOUNT OF TOWELS).
Pile Two: Dress Clothes
Pile Three: Blankets and sheets
Pile Four: Around the house clothes and PJ's.

90% of all this are the kids stuff. How these children got all these clothes I have no idea....I don't remember buying all this, I think I may have a problem, is there a hotline for women who obsessively like to buy kid clothes?


*I Confess that after surveying said piles I seriously considered going to the laundry mat. I quickly decided against it when I recalled the last time I went to the laundry mat. Let's just say that trip involved a women wearing flip flops, short shorts (complete with muffin top), a crop top and a dew rag screaming "I'm gon beat yo ass" at her toddler for three hours. Aforementioned toddler had the ever popular koolaid stain/crusty snot mustache.

*I Confess that then I seriously considered a "drop off" laundry service when I remembered I am the cheapest person alive and so I went and started another load.

*I Confess I found another AWESOME blog last night that made me LAUGH SO HARD.

*I Confess that said blog is PRETTY RAUNCHY and nearly offensive(and I am far from a prude) but I continued to read because I SO need a laugh lately. Here is the link to the new raunchy blog, it's HILARIOUS but if you are easily offended DON'T GO HERE!. He uses the "R" word which I hate but again, the rest of his humor CRACKS ME UP so I just try to overlook that word.

*I Confess that I just realized that the "R" word offends me more than any curse word....strange.



*I Confess that I put poopy diapers in a Hellmart....ooops I mean Walmart bag, tie them up and put them outside the front door. This scares door to door sales people away *almost* every time. Unfortunately it irritates Allen but he has stopped yelling at me for it and just takes it to the trash can that is a long 15 feet from my doorway. Looks it's cold here and I am lazy.

*I Confess that I still have HALF of my Christmas decorations up.



*I Confess that our family generates more trash than ANYONE ELSE on our entire street and possibly in our entire neighborhood.

*I Confess that I get WAY too excited over comments on my blog and I'm starting to wonder if that's healthy or not.

Have a great Saturday.

I surrender.

Things are somewhat resolved.

That being said I am taking a step back.

I am surrendering this (seriously this time....stop laughing...I really mean it) to God.

I fear if I don't this entire situation will ruin me.

I can't let that happen.

I have too many people that love me and need me.

Seriously last night I was slipping down so far that I felt the "old me" coming back. Meaning the "me" when Makily was little and I was so consumed with grief, anger, fear, sadness, depression etc. I do not ever want to be in that place again or become that person.

All I can do is love J with every ounce of me and do what is best for him. Ultimately no matter what I do or say what is to be...will be...I have no control in this.

I have to be patient and see what God does.

I have to wait for him.

I am going to be positive and hopeful in all these things and let God do his work. I have control issues and even bigger issues with being patient and so maybe this is the lesson God is trying to pound into my head. What can I say, I'm hard headed and it's taking a while to sink in.

Please pray for strength for me to be able to stay with this resolve, to leave it with God and to trust him.

I have to have blind faith here....there's no other choice.


Damn, this is hard.

I am tired.

Guys I am tired.

I feel defeated.

Betrayed.

Depressed.

Used.

Ignorant.

Defeated.

(I already said that didn't I?)

I feel like I am ALWAYS fighting an uphill battle.

Like I am always taking one step forward and two steps back.

The fighter in me wants to just keep going but honestly at this moment I just want to roll over in a ball and cry.

I want to throw my hands up and say "fine, do whatever you want"!!

I guess I am hard headed because I can't do that.

Either that or I am just plain stupid.

I am so tired, I can't sleep and when I do sleep I dream about what is going on. So it's fitful sleep at best.

There are so many horrible things that could happen in the next several weeks and I am sick over it. I keep telling myself not to keep saying "what if" this or "what if" that. It's hard though when you are dealing with vindictive people that seem to have no conscience.

This is what I get for telling the truth.

This is what I get for putting J's best interest in front of EVERYTHING INCLUDING myself and my feelings.

What have I risked?

Of course when things as horrible as this is going on I find myself saying it again.

WHY GOD............................WHY?

I just don't get it.

I suppose I never will.

I just want some peace and happiness.

That's all I was ever looking for when all this began.

Am I asking too much?

Maybe I don't deserve it, maybe I am destined to struggle all my life.

I don't know how much farther my faith can be stretched.

I don't know how much more crap I can carry on my shoulders, but this has brought me to my knees and I don't know how to get up from here.

I just don't know anything anymore.

Anonymous Comments = COWARDLY PEOPLE

Once again ANOTHER anonymous poster on my blog.

First of all "anonymous" I would like to commend you on how incredibly COWARDLY you are to post something like this and not put your name. VERY NICE. It's really easy for you to comment like this especially when you know ZERO of the circumstances surrounding J'S CASE!!!

I guess I will post it here so everyone can follow whom and what I am answering. This was left in the comment section of my last entry.:

I hope when you say you'll never give up baby J that you don't mean that you would not give him back if the state deemed his parent or parents fit to take care of him. The first goal of Foster Care is to reunite the family, their first obligation is not to help you adopt the first baby that comes along, I'm sorry to say that but it's the truth and you really should already know that. You took on foster care because you couldn't afford to adopt but maybe you should concider saving your pennies and adopting a baby in a few years rather than going through the foster care system. Clearly you have gotten yourself attached to this child and when the day comes that he needs to be returned to his biological parents I seriously hope you give him back. People can actually change and they might actually be able to provide for baby J. You are just the extended babysitter until such time that they can provide for him. You really should have known that you are the sensitive type of person who gets attached and you should have concidered saving all that money you spent on preparing for foster care and just using it for adoption. It's too late for that now, so maybe you should concider once this case is over NOT getting another child from foster care and just saving for adoption. Personally it seems to me that your little girl has enough need of your time that it wouldn't be a bad thing to wait a little longer anyway

******LONG ANNOYED SIGH***********

********DRAMATIC EYE ROLL**********

If J's parents had gotten it together then YES it would rip my heart out but I would not fight tooth and nail to keep him here. If he were going to a home in a stable environment where he would not be in danger DAILY then YES it would hurt but I could let him go. We would not do anything illegal like flee the state or country. Makily is too fragile and we NEED all of our friends and family to survive. We are rooted here and don't plan on leaving. So no we would not risk our freedom and Makily's life, we are not criminals.

FIRST AND FOREMOST being a foster parent it's my job is TO PROTECT AND NURTURE THIS CHILD. What would you do ANONYMOUS if you took care of a child for eight months and were the ONLY MOTHER HE KNEW and you were told they were sending the child into a dangerous situation? Would you sit by and say "well I am just the "extended babysitter" whatever you say DCF". Maybe you would but I WON'T AND CAN'T as I wouldn't be able to live with myself if J's little face was splattered on the front page of the paper weeks later. At least I WILL KNOW that I did EVERYTHING I could possibly do to keep him safe and ultimately DCF made the decision and it's on their heads NOT MINE!!!

I know that DCF's FIRST GOAL is to reunite families. It's been pounded in my head for nearly TWO YEARS now. AT WHAT COST THOUGH?! Reunite a family when the problems that started the entire case ARE STILL BLATANTLY THERE IN EVERYONE'S FACE!?!? Then what? The child (in our case) whom has had a "nearly normal" life is thrown into an environment that he likely will be ripped right back out of months later and put into a DIFFERENT foster home? If that doesn't scream ATTACHMENT DISORDER I don't know what does.

YES people can change I have seen people do it, BUT IN THIS CASE THEY HAVE NOT!

YOU HAVE NO IDEA WHAT YOU ARE TALKING ABOUT.........NONE. I CAN GUARANTEE IF YOU KNEW THE CIRCUMSTANCES OF THIS CASE (WHICH YOU DON'T) YOU WOULD CRAWL RIGHT BACK INTO THE LITTLE DARK ANONYMOUS HOLE YOU CAME FROM WITH YOUR LITTLE FORKED TAIL TUCKED BETWEEN YOUR LEGS.

I won't even address the LOW BLOW comment you made about Makily and how much time she needs from me. Your not worth it.

I am seriously considering disabling anonymous comments on my blog. The last thing I need is someone coming here without the GUTS to say who they are judging me without knowing what the hell is going on. Don't I have enough to deal with anonymous? Does it make you feel good to pile on ANOTHER weight on my shoulders?

Do me a favor anonymous.......lose my blog address.


*by the way I so hate trying to spell anonymous and it was so annoying to have to go spell check it 800 times. At least I know how to spell "consider".**

Nothing's ever easy.

So just when I thought that "the powers that be" could not shock me anymore....well......they did.
I am aghast at what they have done this time. (I don't think I have ever used the word "aghast" in my life before, it's appropriate here I think!)

I don't know why but I just didn't see this coming.

I admit that I have had some pretty evil thoughts about these people in the last several days. It has helped me tremendously to read through the entries at POSTCARDS FROM INSANITY. It's funny reading my thoughts and feelings written by someone else whom has lived through this hell that I call my life.

Of course I can't share details but I will say that the behavior being displayed right now is sheer vindictive, hateful and just downright childish. How some of these people can do the things they are doing and sleep at night is BEYOND me. I get that after you are in a field for a while you can get hardened to certain things. My feelings on that is that if you have become as HARDENED as these people appear right now, then you need to find another job.

What baffles me is that the "solution" they are coming up with IS so far from what would be beneficial to J it's not even in the same atmosphere. It's so blatantly obvious that this is being done in retaliation. I revealed some things they were not doing correctly and so I suppose this is my punishment.

There is a special place in hell for some of these people.



**warning crude statement ahead*


Allen says that special place is "Under Satan's genitalia".

He said it in a WAYYY cruder way but I tried to clean it up.


Once again forgive my blatentness here. If I am anything I am REAL on my blog and well once again as ugly as it is, this is how I feel.

Keep praying blog stalkers, keep praying.

I'll never give up J.
Love you Baby Boy.


p.s. Michele from Daily Grind, now you partially know why I needed that AWESOME VIDEO you put up last night. Seriously I couldn't think straight ALL DAY and so watching your roll with your punch TOTALLY lifted my spirits. Keep the vids coming girl.

De Je Vu?!?! Seriously people, TELL ME WHY this keeps happening to me!

So today I went to K-mart to buy a vacuum cleaner. Ours died because I.....err...I mean someone ran over a screw driver and broke the belt on it.

Of course there are NO prices on any of the vacuum's I am looking at. As always, that's MY luck. I narrow it down to two choices and load them both in the buggy. I figure I'll have the checker scan them both and then I'd buy the cheapest one (I told you I am the cheapest woman alive).

I was in need of panties (i've gone too far again haven't I?). So I go to the panty/bra section and I am looking around. I notice a guy walk through the panty section and I make sure NOT to make eye contact. I know better since the last GUY IN PANTY DEPT FIASCO WITH TRISHTWO.

A few minutes later while perusing the assortment of Hanes six packs he approaches me.

Great.

Seriously I was thinking "is this happening.......again.....REALLY"?

I swear it was the "tiny mexicano man incident" all over again.

What blows my mind is I seriously looked like a ragamuffin. I had NO makeup on, a pair of old jean shorts and a BRIGHT GREEN "Kurt Kelly for State Representative" t-shirt on.

SO NOT SEXY!

Here's the recap of our awkward conversation:

HIM: You speeekee Spanish?

ME: Uhm what?

HIM: You speeeeeeeeeke SPAAAANISH?

ME: No no, just English.

HIM: Oh okay.

*I then to try and escape when my buggy gets hung up on a bra hanger on the ground and makes an embarrassingly LOUD SQUEEEAK NOISE, all the while he is staring at me with a goofy grin on his face*

Kill me now.

I awkwardly say "oops, sorry about that".

Why I apologized I really an not sure. Maybe I was afraid he thought I farted instead of rolling over the hangar.

Then he starts again:

HIM: What's your name?

ME: Trish

HIM: Troooooooch?

ME: No, Trish

HIM: Oh Tratch?

ME: Uhm yeah that's it.

(he could have called me mud, I would have cared less, I just wanted out of there!)

HIM: You give me phone number?

ME: Ugh, no I am married (pointing to ring).

HIM: Oh sorry.

Then he darted off like his hair was on fire which was incredibly relieving that this horribly awkward moment was OVER.

At least when I told him I was married he let it go unlike "tiny mexicano man" who told me "it's okay" over and over.

sigh

Don't get me wrong I have no problem with Spanish/Mexican/Latino men AT ALL. In fact I am part Spanish. My grandmother's maiden name is Hernandez, my Great Grandfather was a true Spaniard in every sense of the word.

I just don't understand what it is about me that seems to ALWAYS attract men that can't speak English!

I hate these horribly awkward moments.

Maybe he admired what a clean person I was because I had so many vacuum cleaners in the buggy?

Perhaps he thought I would be a great housekeeper?

BOY WOULD HE HAVE BEEN SURPRISED lolol

I'm not even shocked anymore.

My trust for child welfare is pretty much non-existent these days.

There was meeting on J's case this week.

Of course I went.

I arrived ten minutes early just to be told they were running a half hour behind.

It was almost an hour past the scheduled time before I was called back to the meeting.

They started it without me which REALLY infuriated me since they all knew I was sitting out there waiting.

I think I ruffled feathers last week (which I don't really care) by giving a synopsis of J's case to "a higher power". Leaving me waiting and starting the meeting without me was my punishment perhaps. I could just be reading too much into it and maybe they are just inconsiderate jerks.

Nothing was done or resolved. I got the vibe that this meeting was really just a formality and that nothing really is going to get done or changed until the next meeting.

It was more like a meeting to plan for the next meeting?

I was almost surprised because there has been MANY things going on surrounding the case in the last week and no one seemed really very interested in talking much about it. Everyone was very "matter of fact" and totally non-chalant.

This annoyed me.

Near the end "Dingbat" (someone involved in the case) told an out and out blatant lie. I called her on it in a very non-confrontational way. She acted like I was the crazy one. I quickly realized that I would get no where with her and so I just said "Oh maybe I misunderstood".

sigh

I have to admit that I am hardened to the lying and manipulating now. I am not even shocked much by it anymore. I think if they all told the truth and actually did the job that they are paid to be doing I would be more shocked then.

Cardiology Follow Up.

So we did NOT get discharged today.

:-(

Really it could be so much worse so it's totally okay. Really it is.

I did a little video so I will just do a quick recap and you can watch the video.

The kids were ANGELS on the way. Makily was giggly and sweet as pie and J ate his bottle and pointed at the window while grunting "uh".

Typically you have to pay to park but we have the trusty handicapped placard so the parking attendant waves us by. The handicapped parking is through the parking garage in an open lot. You literally just have to drive straight through but there is an "arm" that lifts when before you get in. We backed up and pulled up to it three times and the stupid arm would not go up. The parking attendant did not come over to help and we didn't have time to go and fight with him so we just gave up. We park on the second floor then lug the kids up and down the stairs. What the heck would a person with a big wheelchair have done? I don't know.

Annoying!

Makily stood on the scale like a big girl to get her height. I WAS SO PROUD I ALMOST CRIED. They didn't weigh her because her balance is not so great and she needs to hold on. I was just proud that she stood up long enough to get her height and didn't have a cow about it. She's my big girl!

They did her blood pressure, EKG, an ECHO and we came home with a 24 hour holtor monitor.

So fun.

Makily was really good for everything except the blood pressure. She's tough to get and they use the electric blood pressure cuff so it just about squeezed her arm off. When her arm turned a nice shade of purple I said "uhm is this done yet"? She CRIED and was VERY ticked off. I don't blame her. They finally got it on her leg.

I told the doctor about the weird petechia Makily had been getting and how we stopped the aspirin and they went away. She said she would not have expected such a low dose of aspirin to have caused that. It's Makily we are talking about here though so nothing surprises me when it comes to her.

EKG was fine and so was her blood pressure.

Echo is still showing Mitral Valve Regurgitation.

I asked what caused this since it was never noted before the heart cath and ASD repairs

She explained that Makily had so many holes that in order to plug them all they had to use a larger device than they typically would use on a baby her size. When they do that sometimes the "device" (in Makily's case an Amplatzer Occluder) can "distort" the other valve's in the heart and/or put more pressure on another valve. The doctor said she feels part of this is actually congenital which to me didn't make sense. The regurg was never noted until AFTER the ASD repair. Her explanation is that the edges of Makily's Mitral Valve are "floppy". She feels like they likely always were BUT it is noticeable now because of the extra pressure on the valve from the large device in there.

I hope that made sense.

The good news is that there is NO RESIDUAL LEAK at the site of the device. Sometimes there will be a small leak here or there but NONE at all was seen.

Due to the regurg we have to continue seeing cardiology once a year. The doctor just wants to make sure it does not get any worse. At this point it is mild so it's nothing to be too concerned about. I didn't even ask what we would need to do if it became worse because I was afraid she may tell me. :-?

They put a holtor monitor on her just to make sure her heart rhythm is okay (which I think it is) and as long as that is okay she will be sending over clearance to ENT for Makily's ear tubes and ABR on the 23rd. (that was a long sentence)

I'll admit, I had a "moment" today.

One of those moments that THANKFULLY have become few and far between instead of a daily and almost hourly occurrence that used to plague me.

As I laid next to Makily while the tech did her ECHO I again was hit with

"wow I have a child that was born with a heart condition and..............................."

It's a sobering reminder of all the things she and we as her family have been through in the past nearly five years. I am so much better about NOT dwelling on all the sad, horrible things from the past.

It's in situations where I look at Makily laying on a table, EKG leads stuck to her porcelain white skin, a feeding tube protruding from her little tummy that's been scarred by surgeries and a doppler wand taking picture of her heart well it's hard NOT to think about and remember all that she's been through...and worry about all she WILL go through. It's times like this though that I find myself thinking of all the hard times she has already experienced.

The sadness and despair of it all fill my heart and I just want to cry for her.......and for us.

I am so grateful to have that difficult part of her life behind us now. It was such a sad and incredibly dark time. We all were tested in ways we never imagined. I am proud to say that my entire family and my close friends all came through it stronger and better but most of all we are closer.

I love you forever Makily, through it all no matter what, I love you my baby girl.

**note: for some reason I can't get the dang video to embed here. Click on the link below and it will play for you. If anyone has any idea why I can't get a onetruemedia video to embed LET ME KNOW, it's driving me crazy!**

Makily Cardiology 1-5-09

Now back to our regularly scheduled program.

The holidays are over.

As great as they all were, I am SO GLAD to be able to get back to "normal".

I am actually excited about getting everyone back on schedule.

ahhhhhhhh

Let's see.

So in every day life these are the happenings.

A week or so ago Makily's button came out during a nap.

We did not discover it was out until we went in to get her up and so it was out a while.

I couldnt get the button back in, her stoma closed up too much.

She screamed bloody murder while I bawled trying to jam it in.

I tried an 18fr that I had on hand (one size down from her usual 20fr), same thing WOULD NOT go.

Makily and I are both in tears and Allen is pacing. I got creative and put a 14 fr suction catheter in there, while Allen seached the house for KY Jelly.

Do we have fun here or what? Thankfully after about half a tube of KY Jelly, Makily screaming, me crying and pushing I finally got the 18fr in.

Have I said how much I hate the button lately?

We are still awaiting the appt with GI to get her stoma "sized" to see if that's what's causing all the issue. It's in two weeks.

We went to ENT a week ago. They made us see the audiologist which I JUST LOVE (that was sarcasm by the way). Reason I HATE the audiologist is that Makily has a hearing screen each time we go and she NEVER passes it. She is a loud breather, and she will not do what the want her to. Then they go on and on about her not passing the test. I KNOW this kid can hear. She responds all the time. Well this time she did AWESOME. She reacted and responded appropriately for the first five minutes of the test and then she just giggled.

sigh

The ENT wants tubes back in her ears. Said they are full of fluid, tubes are out. So she has an appt January 23rd for that and another ABR (auditory brain response hearing test). ENT says he just wants a repeat one to compare it to her ABR from when she was nine months old. As long as things are the same or better then we won't have to do it again and we won't have to see audiology anymore. His concern is possible progressive hearing loss. He wants to make sure if there is something like that going on we can catch it now.

Tomorrow she has her cardiology appt. It's her yearly check. They will do an EKG and an echo. They would have released her last year but after her ASD repair her echo showed Mitral Valve Regurg that was not previously noted. They wanted to check it again to make sure it's not any worse. My hope is that it's resolved and we can be discharged from the cardiologist. It would be nice to finally lose one specialist after nearly five years!

All kinds of drama in J's case. Up, down, UP, DOWN, up, down. I am so tired of it.

He's worth it all though.

HAPPY NEW YEAR!

We had a great New Year.

Over a month ago we had planned on going to an event with Trishtwo and Justin. Well I procrastinated in getting a babysitter thinking I had one in the bag (Granny Julie). We asked her the day before and she had made plans. She told us she felt bad and we were like "ugh you have a life too"! Anyway, Allen's brother John was not going out and so we asked him to "sleeping baby sit". J would be asleep when we brought him over and Makily well she's the EASIEST kid to sit ever. Granny would be there an hour after we dropped them off so it was a go for New Year's!

I didnt realize how much I REALLY needed to "let my hair down" until we went out.

We had a blast.

Typically we are a smidge boring. Our "party days" are long over and a exciting evening for us is having people over to play the "Kareoke type" game "LIPS" on the X-Box!

I know we are party animals right?

We went to a benefit for the Humane Society. It was called "Animal Night Fever" and was supposed to be a 70's New Year's Party. I started to dress the part to the hilt but then decided to tone it down and I am glad I did. There was like ONE or TWO people dressed up, thank God I toned it down.

It was catered by Ipanema which is a Brazilian restarant in Ocala. They are SUPER expensive and we have never been there. The food was buffet style AND SO GOOD.



The drinks were done by SKY (a local asian bar) free and the bartenders took care of everyone.


They had a DJ and dancing.

Those that know me realize that the combination of me, free drinks and dancing makes for a good time LOLOLOL.

We got there about 9pm and rang in the New Year there. We took apart our center piece that consisted of a top hat, beads and boas and wore them. Trishtwo and I danced our butts off, she nearly gouged a guy's eye out with her feather boa while doing a Britney Spears type move. He was super sweet about it and she gave him her boa to make up for nearly making him a cyclops. He gladly took the boa and did some pretty interesting yet scary things with it. LOLOL
There were several men there doing the "white boy's overbite" dance. Totally reminded me of my friend Kristy and I in our younger days. We used to do that back in the day making fun of the freaky guys at the club.

So here are the pics from New Year's. It was a great time!

On the way there.




SMILE BABY!!!


The Boys Justin and Allen


Our messy table.


What's with the men not smiling?


awwwwwwwwwwwwwwwww


awwwwwwwwwwwwww again


Me (this picture really highlights the "beakness" of my nose. Allen calls me spike :-)


Drink number two...yes it does not take much for me.

Me with my boa!

CHAM-PAN-YA

(you throw cham-pan-ya in my face one time shame on you........

(inside joke mom will totally get it...I said it about 100 times that night, no one had any idea what the heck I was talking about but me!!!! I live in my own world.))

KISSES


More Kisses


Who the heck was this kissing me? Just kidding it's Trishtwo


Drinking my New Year's Toast!

Here's to hoping for a wonderful 2009!