The Seizure...

I woke up early that Saturday morning to the familiar sound of Makily fussing. I slowly sat up, rubbed my eyes and went to turn the light on in the living room. Makily and I were sleeping in the living room because we were doing renovations on our bedroom. I looked over at the clock, it was 3 AM. I went over to Makily and she was still crying and had started grabbing at her G tube. "Does your tummy hurt baby?" I sat down next to her and lifted up her shirt to check the G tube. It wasnt leaking...that's good I thought. I checked her diaper that was still clean and then sleepily decided I would give her Prevacid thinking maybe her tummy was bothering her. I quickly prepared it and gave it to her. Makily calmed down. I turned the light back off and laid back down on the couch. Right as I began to drift back off to sleep Makily made a strange noise. I jumped back up and turned the light on. I looked at her and she was staring at the ceiling. I said her name once.....twice......nothing. I sat down next to her and shook her she continued to stare as if I was not even in the room. My mind started to race but I immediately was talking myself down at the same time. Is this a seizure...........no it can't be....we just went to neuro yesterday, they said she was FINE....you are just thinking seizure because we were just at neuro......stop jumping to conclusions. Then I picked Makily up and immediately realized, I was not jumping to conclusions. Her entire body was limp....she had NO tone, in fact had I not felt her breathing I would have thought she was dead. I quickly laid her down on the couch and she was still staring vacantly. I shook her, screamed her name right in her face....clapped my hands....still no response. I am getting scared now. I have said many times that Makily can ignore you like no one else can so I decided I had to do something that I KNEW would get her attention no matter what. I pinched her leg.......still nothing but vacant staring.....then it started.....the twitching of the same leg I had pinched. I grabbed her leg and it stopped....as soon as I let it go it started again. I ran to get the phone....by the time I got back both of her arms and legs were twitching. I call 911......."My daughter is 2 years old and I think she is having a seizure." Notice the words "I think". My child is very obviously seizing in front of me but I was still even then trying to deny it in my mind. The 911 operator made sure he had all the correct information and said he was dispatching someone immediately. Makily remained non-responsive and actively seizing. I kept asking why she was seizing for so long and why it wouldnt stop. The operator just continued to ask if she was still breathing. Yes she was...after about the 3rd time he asked me, it occured to me that she could stop breathing. It was about that time that I could feel myself start to panic and I started to cry and shake Makily while screaming her name. The operator told me to calm down and that if she was seizing she couldnt hear me. I quickly got myself back together and asked what was taking so long. He kept saying "they are almost there". It seemed like an hour had gone by. I opened the front door and a few minutes later heard the ambulance but they were not driving up. WHAT ARE THEY DOING!!!!! I ran back over to Makily and she had pooped.....Do I change her...should I move her...what do I do, God help me. The ambulance drove up just then. I hung up with the 911 operator and looked at the phone....the call had been 13 minutes.......I could feel the knot in my throat forming as I realize that she had been seizing for at least 15 minutes. A female and male paramedic walked in the door looked shocked and said "OH, this is a pediatric call?!!?" The female knealt down beside Makily watched her for about 5 seconds....picked her up and ran out the door with her. I grabbed my keys and ran after her. The male said they were taking her to Munroe and I said I was going with them. I got in the ambulance and I heard the female say "her oxygen saturation is 72%" (normal is 95-100). My heart sank. I know Makily is so hard to intubate even some of THE BEST pediatric docs struggle to get an airway on her, she is starting to go into respiratory distress, what if they can't get the tube down? I CAN'T BELIEVE THIS IS HAPPENING. I called Allen and my parents while on the way to the hospital and basically blurted out "Makily is having a seizure and they are taking us to the ER". The ambulance ride was awful. It took several doses of meds to make the seizure stop...her IV was not easy to get in and blood was everywhere. I remember seeing the paramedic go to put an oxygen mask on her face. I said "she hates anything on her face!!" The mask was on by the time I got the words out and Makily just laid there.....staring vacantly admist slowing twitches of her tiny body. I realized how "not with us" Makily was at that moment. We got to the ER and it seemed like there were 20 people around her bed all talking and doing things to her. I felt like a robot rattling off her medical history and explaining her difficult airway. It all seemed so surreal. It took 4 or 5 attempts to get her successfully intubated. Each failed attempt would end with Makily coughing and gasping for air and me crying and praying with all my might for them to get the tube in place. I kept seeing flashes of her smiling and laughing....visions of Makily sleeping on my shoulder and hearing the sounds of her breathing in my head. God please don't take her from me now, I am not ready to let her go yet. Finally they get the tube in place.....it was taped VERY securely. It was so tough to get down that they actually assigned a nurse to stand by the bed and "protect THAT airway". Her job was to make sure Makily did not wake up and start to move the tube around or pull it out. The meds would start to wear off and Makily would start twitching again. How long is this going to go on!?!? GOD PLEASE MAKE IT STOP!!!
They would dose her back up with meds and she would calm. She spent 4 days in the hospital, 3 of which on a ventilator. I have never seen her recover this quickly. God heard my cries and all the many prayers and decided to let her stay here. She still has so many more lives to touch and lessons to teach. Her work here is not done and I pray it won't be for a very long time. Until then, she continues to amaze me and make me fall even more in love with her each and every day.

I'VE WON, I'VE WON.....IT'S THE GOLDEN TEDDY BEAR!

A few days after posting my last blog entry I had sat down at Mom and Dad's and read it to my parents. My Dad was proud and did laugh along with my mom and sister. Then of course we all started reminicing about other "funny dad stories". This one is something I had honstly forgotten about until my mom brought it up. I thought I HAVE TO BLOG THIS..and so I am.

**Disclaimer** I did advise my father I would be blogging this story and he was totally fine with my telling his sad "GOLDEN TEDDY BEAR" story. He hopes you all feel sorry for him and scold me for laughing at his pain!!**


The Tiny Golden Teddy Bear.

Ever since I can remember my dad has ALWAYS carried his lunch to work. In his lunch box was ALWAYS the same thing. A ham sandwich with tomato and mayo on white bread, fruit cock tail that we put in a small tupperware bowl and a little debbie snack cake. At the beginning of the week we would open a can of fruit cock tail and dump it into a bowl. Then we would scoop out enough for his lunch each day.

This one particular day my Dad came home VERY EXCITED! He was telling my mother that HE MUST HAVE WON SOMETHING! He has to see the fruit cock tail can. My mom of course thinking he had lost his mind asked why. He explained that when he went to lunch he was eating his fruit cock tail and discovered a little Teddy Bear floating in it. It MUST mean that the makers must have a contest going on for the person who got the "Golden Teddy Bear". We could be millionaires or owners of a brand new car and not even know it!!! My mother asks to see this "prized bear". My dad excitedly pulls his small tupper wear bowl out of his lunch box, opens it and presents his "winning bear" to my mother. My mom starts to laugh HYSTERICALLY! Dad says "What the heck are you laughing at!?" My mom finally got herself together and explained. This "prized bear" that my poor dad had saved was actually a huge swollen up gummy bear. My sister and I had a bag of gummy bears we had been snacking on. For some reason we put them in the fridge. Well a gold colored one had fallen into Dad's fruit cock tail and soaked up all the juices....making it swell into GIGANTO GUMMY BEAR. When Dad found it he thought he had hit the Jackpot......he threw the fat gummy into the trash heartbroken and disapointed. I don't think I have seen him eat another gummy bear since that day.

Hold on to your hats...err,r uhm I mean ski masks

So my Dad is a character. I have always enjoyed his humor and insanity, but it seems the older I get the crazier and funnier he gets. While my dad is not an overly emotional man, as time has gone by I have seen him soften. He was amazing when Makily was born and I will NEVER forget a moment I had with him just an hour or so after her birth. He came into the room after I had asked several people for my Dad. He walked straight to my bed and hugged me while I cried. I could tell he was shaken from all that was happening but he was the strong rock he always has been and kept saying over and over "it will be alright, it'll be okay Patricia". We hugged for a long time. I will never forget that moment. He worked his butt off for us when we were kids. I vividly remember a time when my parents were going through a tough time financially, the place he worked for was laying people off and talking about closing the doors. The work was sporadic, so when they werent working he would go to A Day Labor. One day he came home exhausted and dirty from a day of shoveling mud in the rain. At the time this didnt really effect me. Now looking back I am in awe of his pride, strength and determination to provide for his family. My parents NEVER ONCE took welfare, food stamps OR ANY state aid. They always made ends meet no matter what. I have the utmost respect for both of them for all of those reasons.
So onto my crazy story about my dad.
He is thrifty something I have proudly inherited from him. My mom likes to call us cheap but I say we are thrifty! Anyway my parents were looking for a fan for their bedroom. They went to Walmart and my Dad found this HUGE ridiculously sized INDUSTRIAL fan for I think $20. My mom said "uh no let's get this one it's smaller and more what we need". When my dad saw it was more expensive he said "no this is bigger and cheaper!" So the industrial sized fan they buy. That night they are settling into bed. They set the fan in front of the bed and turn it on. The force of the fan nearly blew my parents out of the bed. My mom told my dad to turn it off, it's too strong and she feels like she is in a windstorm. Well Dad being my Dad refused to admit the fan was too strong because that would mean they would have to buy another one and spend more money! So my mom bundles herself up in blankets and goes to sleep. She woke up hours later and was immediately frightened. There was a man laying in the bed next to here wearing a ski mask.....at first she was scared but then realized...it was my dad. She woke him up and said "Ken what the hell are you doing laying there with that ski mask on?" He sleepily said "The fan was freezing my bald head so I put the ski mask on to keep me warm."

My mom made him buy a new fan the next day.

2 words that make me sick to my stomach....

Balanced translocation.

2 numbers that make my stomach churn.

11 and 22.


These words and numbers used alone and NOT together are not a problem to me. It's when you group them together I get nauseated. I see them online or hear someone else say Balanced translocation, my heart skips a beat and I get excited, then sad. Excited because FINALLY someone else knows EXACTLY how I feel and shares this rare "fluke" with me.......Then sad because I know they have walked the same hard road I walk, felt the same guilt and self hatred I have felt, but mostly asked God why more times than they can count.

When Allen and I were trying to conceive (ttc) we had fertility testing done. I was convinced I had endometriosis or some other female disease or syndrome that would leave me infertile for life. I was mortified at the thought that I would never be able to have children. I would obsess about what was wrong with me fertility wise....before I even knew there was something wrong with me. I don't know why but I always feared not having children. I was never one of those people that went through life saying "i'm going to be a doctor, a nurse, an astronaut or even the president". I just wanted to be a mommy........okay so there was that one year I wanted to grow up and be a rockette, realizing back then that I was way to short to even be able to try out...I decided I would be fulfilled and happy being a wife and mother. (although sometimes I will do kicks in the living room to entertain Makily from time to time....JUST KIDDING...okay not really)
So after 6 months of trying my stupid obgyn told me I had low progesterone and that he would prescribe clomid (mild fertility drug). I FREAKED out. All my years of worrying and wondering what was wrong with me had come to fruition...I HAD LOW PROGESTERONE.....I knew it, I just knew something was wrong. So after reeling in depression over that diagnosis I began taking clomid. This medication made me cry all day long and want to watch Steel Magnolias and Lifetime original movies long into the night. My first month on clomid I had HORRIBLE pelvic pain and went in to have an ultrasound. Oh the joy and fun that was. Imagine holding about 2 gallons of urine while having someone press on your stomach in the midst of stabbing pelvic pain. This lady had ZERO sympathy for me and my busting bladder and actually had the nerve to ask if I had drank the 2 gallons of prescribed fluids before the test. (okay not 2 gallons but it sure felt like it) YES I DRANK ALL OF IT! Then she instructed me to drink more....I gulped down another 8 ounces and laid down for more torture. She finished that part of the ultrasound and then told me to empty my bladder....but just a little....ARE YOU CRAZY I am thinking...just a little!? How am I supposed to do that.....I feel like a racehorse right now and you want me to pinch it off!?!? So I waddled with my legs crossed to the bathroom and peed....just a little. This was torture! I lay back down on the table and she explains she is going to do a transvaginal u/s. *sigh*. For those who do not know what that is....it's basically a "probe" type device that is err.....uhmmmm inserted into the vagina. So imagine holding what is now half a gallon of pee with said probe in vagina moving around pressing on my bladder. I have never held pee this hard in my life.
So the obgyn calls with my u/s results and says I have several follicular cysts bursting everywhere. Fluid in my pelvic cavity and that it's a good sign that I am ovulating. Oh wonderful. The next month on clomid I experienced the same pains BUT they were even worse than last month and I was walking hunched over. I went back to the obgyn and he said "well you have cysts bursting everywhere and I am just missing something so I want to refer you to a specialist in Gainesville".
So off to the specialist we go. We sit down with the doctor who tells me that he can't find the lab results saying my progesterone level was low. I show it to him to which he replies "13.7??? that is not low progesterone, who told you it was low?" MY OBGYN DID, WHO DO YOU THINK!??! He then explained that my level was NORMAL and that all the pelvic pain from the previous 2 months of clomid use was most likely caused by ovarian hyperstimulation. (I matured too many eggs at once) His advice was to try for another 5 months. If we wanted to do some very preliminary testing such as genetic or hormonal that we could but he felt we should wait another 5 months. I agreed and besides my hormone levels were fine and genetic testing...sheesh I don't have any genetic problems, I didnt even think twice about it.
I had a few other procedures with my NEW obgyn and even had a laparoscopy that was normal. Finally I was starting to think that all my worrying and wondering was for nothing. I was NORMAL, I needed to stop stressing and I would get pregnant.

Finally I did.

After 15 months of trying we found out on Allen's birthday I was pregnant. HOW EXCITED AND BLESSED I FELT!

Fast forward through a very normal happy pregnancy and very normal ultrasounds.

I had Makily and the MOMENT I saw her I KNEW something was wrong with her. I knew it was bad....I just didnt know what. They diagnosed her with trisomy 22 when she was 6 days old. They werent sure if it involved another chromosome but they said it may involve 11. I asked how this happened and it was then that it hit me....I knew. This was what was wrong with me all this time. The thing I had brushed aside and never gave much thought too....genetics. The doctor told me it could be a fluke and just one of those "things that happen". OR that Allen or myself could be "carriers". He explained that if one of us was a carrier it is possibly the reason why it took me so long to get pregnant. Most trisomy 11 or 22 babies are miscarried early on before you even know you are pregnant.
My heart was sinking fast. Taking in that Makily would be severely handicapped in EVERY WAY, being told they werent sure of her life expectency and then BAM......now it may be something you passed down to her......you did this to her. It was too much for me to take and I was so angry. I hated the world.

They took our blood to test Allen and I the same day. I got into a fight with the lady at the hospital lab because she was a raging B*tch and was very rude to me, she was confused of what test was being ordered and instead of calling upstairs to the doctor...she took it out on me and talked to me like I was a 5 year old.....I had enough that day. I told her if she had any compassion or had any brains she would know that the testing we were having was LIFE ALTERING and that I had a baby in the NICU and I didnt need her crap!! I ended up telling her she WAS NOT touching me or drawing my blood and then breaking down into hysterical tears. We got the blood drawn by a nice man that was there. The lady did get in trouble I don't know what kind but I know she was reported.

A week later I was walking into the NICU to see Makily. She was having her g tube surgery that day. She was 3 weeks old. I was at the "scrub station" and I saw the geneticist walk in. He came up to me and said "Caldwell right?" I nervously said yes and he said "oh well I got your bloodwork back". My heart is pounding now....what is he going to say, surely if it's bad news he wouldnt tell me here in the hall by the scrub station. Just say it.....SAY IT! He said "you are a carrier...if any of your family members are of children bearing age they should be tested too". With that he walked away.
So now I am standing there realizing that all of Makily's problems were genetically inherited and linked to a crappy gene I gave to her. Knowing that if Allen and I have any more baby's that they may be just as sick or sicker than Makily. Even worse they may die soon after birth or be still born. I slowly walked to Makily's crib, I picked her up being careful not to pull any of the tubes and wires attached to her. I sat down in the rocking chair with her, held her tight and cried my eyes out. In between sobs I told her how sorry I was that I did this to her. That I would do everything in my power to make it up to her.....to make her life the absolute best it could be. I was so damn sorry.
There were days upon days that I hated myself. I hated the world, I hated normal people. Happy people made me sick. People with healthy baby's made me angry. Pregnant women made my skin crawl. I would sit on the shower floor crying and screaming at God. Why would he do this to me? What kind of God would play such an awful cruel joke. I had begged him so long for a baby and so he sends me a sick one....then makes it my fault that's she's sick to top it all off. What had I done so wrong? This was the darkest time of my life. I had suicidal thoughts, horrible thoughts that scared me. I wished I could run away and live on the beach by myself. Maybe if I ran far enough away from my problems they would vanish. I imagned myself driving the car off of a bridge. Life no longer made ANY sense to me and I didnt sign up for this. I now had a handicapped child AND could not have any more children. Well I guess I could but taking that chance make me sick. I just couldnt be faced with the decisions that I would be faced with or deal with that. I remember I couldnt even watch TV without being sickened by the meanless shows and stupidity. None of it mattered or made sense to me anymore.

They say that time heals all wounds. I tend to agree, but some wounds leave bigger and deeper scars then others. My balanced 11,22 translocation is my "big scar". I will never truly be over the fact that I have this "weird thing" that most doctors don't understand. My heart will ALWAYS long to carry another baby in my tummy feeling it kick and grow, knowing that my body formed that child and protected it from all harm. I will never be able to get pregnant naturally without being a total basketcase fearing that my baby may have to go through all of the things Makily has gone through....or that it may die.....or worse that I may be faced with the decision of if that baby would be better off in heaven than here with me. I pray that one day God WILL allow me to have another child. A brother or a sister for Makily that will adore her and that Allen and I can love as we love Makily. That is my dream, we will see what the future holds.


Only God knows.

List of pet peeves and other weird stuff about me

1. People that talk too slow really annoy me.
2. I hate it when you see someone with a pimple that is SO READY to pop and it's all white and plump and you can't do anything but stare at it and wish to God they would go to the bathroom and pop it.
3. I hate telling someone they have something in their teeth.
4. I hate it when I hear some idiot teenager with their radio BLARING in their car and booming until my windows in my car or house shake. (*yet another clue that I am not hip anymore*)
5. I dislike people who get up to the check out in a store then they send one of their kids or they themselves go run and get something else they "forgot"......it really infuriates me when the forgotten item ends up being something unimportant like a bag of cookies or chips. I HATE it when people go through their coupons AT the checkout. This always seems to happen to me when I am in line behind them with with a box of maxi-pads and a bottle of Midol.
6. I like to bite Allen, not in a sexual way but I just like to bite...I don't know why I just get the urge to and he usually flicks my forehead for doing it.
7. I get great joy out of seeing the FULL TANK indicator on my car.
8. I tend to wait to get gas until my car is running on fumes......I have only run out of gas one time though and I was LITERALLY across the street from the gas station.
9. I love to put new tastes to Makily's lips so I can see her make the "ewww face", lemon works the best hee hee hee
10. One time when I was younger, poorer and very single I bought a $150 dress to wear to a hoity toity banquet for work and took it back the next day....bad girl.
11. When telemarketer's call and I mistakenly answer the phone...I tell them I am not here.
12. I once walked through a drive through with a friend.
13. I hate wearing shoes and most of the time I am in sandals or flip flops of some sort....good thing I live in florida huh?
14. I have a strange habit of putting my TV on mute when the commercials come on. I don't know why but I do it and it drives Allen crazy.
15. I am a horrible klutz and I fell in my yard yesterday morning. I landed in half on the concrete and half in the grass/leaves. It was still dark. When I got inside I had leaves in my hair, a bloody knee/shin and a horrily swollen and bruised ankle. I did have to laugh at the leaves and twigs in my hair though.

Hi my name is Trish and I am not hip nor cool

It's been a while (almost a month GEESH) since I blogged. Sorry I have been slacking, I plan on putting up a few entries this week though!

First off I want to talk about my recent experience in trying to be cool. Once you become a mommy some of your "coolness" seems to slip away without you noticing it. Things like doing your hair and makeup fully before going anywhere are not that important anymore. Which honestly is okay with me but sometimes I do find myself trying to recapture being "cool and hip" and usually I just make a big ass of myself. I have no problem pointing and laughing at myself and telling others of my stupidity and if you have read this blog at all you know that by now! This story involves my best friend, eerily enough her name is also Trish...I have spoken of her in this blog in the past. She and I have been through alot, and our frienship has battled the storms of being teenagers, young women and now old (26 and 28 years old we are) married mommy's. She has stood by me through the hell that was my life when Makily was born...when I needed everyone to back away, she did without question. I know there were times that this MUST have hurt her feelings as it did other's but she has NEVER expressed this to me or expected an explanation of why I did this or that. She knew what having a baby meant to me and how incredibly crushed I felt when things were so up in the air....well not maybe exactly how I felt but she could surely empathize with me. The times when I needed someone she was always available and has always accepted Makily and loved her as she is. So here is our story of trying to recapture our lost "coolness".

**For confusion reasons my best friend will be referred to here as Trish2**Me and Trish2 used to be very hip. We were cool, really we were. Well since mommydom we have lost some of our coolness and we know it. It's okay but sometimes we try to get it back....and make fools of ourselves.

Okay so a few weeks ago The Teals (Trish2's family) and The Caldwells (my family) all go to Orlando to the mall. We all packed into the van which for normal people would be plenty of room but we have 3 babies in carseats so Justin and Allen sat in the front and Makily (2) and Cammy (2) in the middle and then Aubrey (6 months) in her carseat in the back with Trish and I smooshed together next to each other. My arm was pressed against her boob most of the trip, there were times my leg was draped over hers or vice versa.....while I am sure passerby's thought this was something strangely kinky but I assure it was not. Strangelly enough the boys had decided on riding in the front and had plenty of room....thanks guys! I can't imagine that they would have agreed to sitting in the back so close to each other.

So we get to the mall and are browsing. Trish2 had Aubrey in the stroller and I had Makily in my hip sling carrier....the boys had taken Cammy and were doing their own thing. So we see the store Sephora. I have always heard of it but have never been, I knew it was this posh store and have always wanted to go. Trish2 has been and there before to get her Bare Essentials makeup (awesome makeup I might add). I LOVE the show "Blow Out" with Jonathan Anton and I know he sells his hair products there. I was going to splurge and buy a shampoo or maybe a conditioner....I had even thought about going all out and buying both....yes I am a rebel. So we go in and I see these two girls with the palest UGLIEST pink lipstick on trying a sample....I am thinking "UGH SO GROSS".....so I tell Trish how hidious their lipstick is and she says "ugh dork that is supposed to be a lip plumper, you put it on and it plumps your lips and then you take it off". Okay so now I am feeling not so hip but we continue through the store.

I had to ask where Jonathan's hair product line was and I am so excited. I grab the "sample" shampoo bottle to sniff it and I am expecting an AMAZING scent because I mean this is JOHNATHAN'S stuff it MUST smell just heavenly right? Well as soon as I took a sniff I was appalled, my first thought was....TUNA FISH....just like orange tuna fish. So I let Trish2 smell it and she says the same thing. I get one of the "for sale" bottles and it doesnt smell the same as the "sample" bottle....smells like orange but there is no "TUNANESS" to it. So I find an associate and tell her that I think something has gone wrong with this sample bottle of shampoo, it smells well gross. She looks at me and says "It's supposed to smell like that". I gave her an odd look and say...."like tuna"? So her and I start sniffing the bottles together and she agrees the sample bottle had gone bad or someone had added "scent of a nasty whore" to it. She swaps it out with a new sample bottle.

So we continue to browse through the store and I am still contiplating buying the "non tuna version" of Jonathan's shampoo. Trish2 and I walk around the corner, I happen to look at Aubrey who is now in the baby carrier FACING Trish2. She makes the SWEETEST FACE at me as always and starts HURLING CHUNKS, poor baby was spewing all of her breakfast and lunch all over.....down the front of Trish2's shirt and her pants. Trish stood there with the most panicked look on her face and says " I don't have any idea what to do right now!!!" So I unhook the baby carrier and help get Aubrey out, wipe her face and put her in the stroller, while poor Trish2 is trying to figure out what to do. I notice that there are vomit spots on the floor, the snots that work there are looking at us like "What a couple of freaks". We examine the demage to Trish2's clothes and let's just say she was COVERED in puke. C-O-V-E-R-E-D. So she wears the baby carrier out of the store WITH NO BABY IN IT to cover her DRENCHED pukey shirt!!! Now imagine I am pushing a stroller with baby in it AND carrying another baby on my hip......while the dork next to me is walking happily with an empty baby carrier STRAPPED TO HER! We joked that people probably thought she was some crazed maniac that was pretending she had a baby in there or that she was one of those weirdo's that carry their dog's in a baby carrier....hee hee

We decided we are not cool and next time we try to be we will not take the children...it will have to be a mommy's day out!

I will leave you with this picture. It is of Myself and Trish2 back in our earlier and blonder days. We had just become mommy's so there was a smidge of coolness left. This picture was taken on the first night we had gone out since we had found out we were pregnant, which had been almost a total of 2 years. We had quite a few drinks and were feeling fine!

Sometimes I think my life is a sitcom/drama all in one....

Okay so our heat and air went out over the weekend and of course it was cold...it's been warm for like 2 weeks now and here it is cold again! We figured we would run and get a duraflame for the fireplace until Monday. We call Walmart at about 10 pm and they say they have them. We bundle Makily up, and make our trek to Walmart. We walk all over looking and cannott find any fireplace logs. We ask a few employees, they say there is not any in stock. I explained that we called earlier to make sure they had them before we drug our 2 year old with an ear infection and cough out in the cold night air and were told they had them. No one had a response for me other than a stupid look. *sigh*
I did talk to the manager and he called every Walmart from here to Gainesville and no one had them. I don't know why he called so many stores as we wouldnt have driven 30-40 miles for one....hey at least he was trying to help.
We ended up spending the night at our friends house. I went to Bargain Barry's (stop laughing) the next morning and they had several boxes of duraflames and I bought two boxes. We scheduled for someone to come out today (Tuesday). We had a problem 2 years ago with our a/c freezing up and a breaker. The guy that came out basically flipped a breaker which fixed the problem and then tried to sell us a very expensive new heat and air system and swore that ours wouldnt last another month....this was 2 years ago. I made sure not to call the same company because I felt like they had tried to rip us off back then...I was also 9 months pregnant with Makily at the time.
So this morning the a/c & heat man walks in and I think "gee he looks soo familiar". Well come to find out IT WAS THE SAME DUDE!! He was working for a different company back then. I wanted to scream. What are the chances of ALL THE heat and air places in Ocala that I would get the same guy...again. I immediately was on guard for bull crap. Allen had installed a new thermostat the night before thinking that may fix the problem as neither the heat or air would even turn on, still didnt work. After looking around and flipping and playing with the breakers they realize that one of the breakers is bad, . It will not flip and stay flipped and makes a scary errrrrrrr noise....GREEEEEEEEEEEEEEAT! Then the a/c man starts to try and sell us a new thermostat.....yes that's right, he claims the one we had installed the day before was "a piece of crap". He had one in his van for $90...plus the $65 trip charge and labor for installing it. Allen and I went back and forth and I finally just said "look sir, my daughter has many medical problems and I can't go back to work, we really don't have $90 for a new thermostat right now.". He did soften which surprised me. He tried re-installing the thermostat we had put in the night before. The switches kept flying off. I saw it happen once, I swear he turned the a/c on and the switch flew across my kitchen and hit the wall. Had someone been standing there they would have gotten hurt. When I actually saw the thing flying I did have to laugh....the a/c man just kept saying "I've never seen a thermostat like this" (it was only $15) Finally I broke down when he said it just wouldnt go on. I told Allen to do whatever he thought we needed to do. He told the guy to go ahead and install the $90 one because we had to have one to make the a/c work. The dude was great and said "no man, let me help you out, I am sure you can get a cheaper one that WILL WORK at Lowe's...I am sure it's the breaker". So thankfully he only charged the $65 trip charge.
Then we start calling around to find the breaker...well guess what? Just our luck.....the system we have in the house is "obselete" and they dont' make breakers for it anymore! Allen went all over town looking for the breaker. I got online and found the company that manufactured them and they said they could get us one in 3 days but if we had an ACE Hardware they may have it. So after calling every ACE hardware in Ocala and Belleview.....WE FOUND IT! $42.....THANK YOU GOD! Allen got it installed and then he replaced the thermostat with a digital one that looks EXACTLY like the one the a/c man wanted to sell us. It was $29 though.
Our heat and air are working like a charm now! My husband is Mr. HandyMan and I have told him that all day.

We are still fighting for Makily's stander and her kidcart. I havent complained too much to them lately as I believe once she is 2 years old they cannott fight it anymore. Someone at the insurance company let it slip to me and when I questioned it further they clammed up. After 6 weeks of crying, praying, screaming and begging I FINALLY GOT MAKILY'S PREVACID TODAY! It took that long to get it approved. I swear insurance companies really are enough to make me CRAZY! I started her on it tonight so we will see how she does with it and if it works better than the Zantac.

I am working on Makily's birthday party and can't wait! It is SO HARD to believe my baby girl is going to be 2 years old. What a joy and miracle she is. I look at her and wonder what goes on in her little mind. It must be so frustrating for her not being able to tell me what she wants or what is hurting her. She has such a sweet spirit though and I am so fortnate that she only really cries if she is hurting or has pooped her pants. She is so laid back compared to how she was as a newborn. She constantly screamed and cried and was NEVER happy. It seems so long ago but like yesterday at the same time. I remember thinking she would cry forever, that was before I truly knew all the things that were wrong with her little body. How her tummy didnt empty and how she refluxed straight up her esophagus all the time. I was feeding her every 2 hours then too, I can only imagine how awful that must have been for her. Can you imagine the torture of being force fed through a tube every 2 hours while your stomach is already full and it's refluxing and burning your esophagus? I feel bad thinking of that time because I was emotionally unavailable in every way...and poor Makily was miserable. God Bless Allen, I don't know how he got through it all. He is my rock...forever and ever.

Please pass the cheese, I need to whine.....

I am tired, frustrated, angry, irriatated and sad.

Makily was measured on Nov 16 for a stander and a kidcart. I havent called the company for several reasons. One is that I have terrible anxiety about the fact that my not quite 2 year old needs both of these things. I finally broke down, got over myself and called last Thursday. I was told Makily was denied for the kidcart.....they said it was "a deluxe wheelchair" and they would pay for a "standard wheelchair". Okay WHAT IN THE HECK would we do with a standard wheelchair. My kid is 17 lbs and 29 inches long...she would fall through one of the arm holes. I guess I have to ride in it with her on my lap and Allen can push us both. What a freaking joke.
The company told me they hadnt heard anything back on her stander....which is really what we DESPERATELY need NOW. It will help Makily to bear weight on her legs and I pray to God one day...to walk. I called the insurance company and the A-HOLES say they never got the claim for it. So I call the stander place and they SWEAR it was sent over on 12-23-05 ALONG with the order for the kidcart....NO one can tell me WHY it is that Makily was measured for both of these items on 11-16 but nothing was even submitted to the insurance company until 12-23.
So then I find out that while YES we have BCBS of Alabama that all claims are sent through BCBS of Florida first and THEN to BCBS Alabama. Both of which tell me they have NO ORDER for the stander. Only an order for the kidcart that was denied on Jan 31....they claim after the denial nothing else was done BUT THE stander/wheelchair people insist they have sent more information along with a letter stating why Makily needs both of these items.
So since last week I have been on the phone with a bunch of morons who don't communicate with each other and insist on making my life harder than it already is. There were several times I was left on hold for 17-20 mins at a time. I am sure they were hoping I would go away and give up but I didnt. I am hardheaded. I was even told by one person we didnt have insurance through them and I insisted he continue to look us up because WE DO! After arguing back and forth I spelled out Allen's first name LOUDLY and he said "oh i am sorry here it is". That's how the conversation was started...this was after pushing 800 buttons just to get a live person....OH AND MAKE SURE you push the buttons in the right combination or you will be in a neverending cycle of push this or that button. I HATE AUTOMATED PHONE SYSTEMS WITH A PASSION!!! Have you seen the commercial where the guy is on the phone and his house is on fire but he won't hang up for fear of loosing the phone call after pressing 10,000 buttons...that guy is ME!

Do they think I WANT a stander? Do they think I am doing this for fun? My child NEEDS the stander, she needs the kidcart......why is it that i have to fight, beg and plead for things she MEDICALLY NEEDS and that we pay insurance premiums EVERY MONTH for?! I just feel like DAMN I have ENOUGH stress on me, I don't want to have to sit on the phone for hours......on hold, pushing buttons and arguing in circles over something that my daughter is entitled too.

When I woke up this morning Makily's medport on her feeding tube had popped open in the night so from 2am - 6am formula pumped all over my floor, Makily and her bouncy......I should have known today was gonna suck.

As of right now, BCBS of Florida has the order for the stander and for SOME REASON it didnt get forwarded to BCBC of Alabama. After my phone call today they are supposedly "urgently" sending it to them and it will go up for review....to which I AM FREAKING SURE they will deny her and then we will have to start all over again. As for the kidcart.....I am really not sure what the hell is happening. I was told it was denied....then Makily's caseworker wrote a letter of medical neccessity and that it was supposed to be reviewed again but honestly I don't know. I am going to give it a few days and call back on Monday. It's really wearing me down and I am getting nothing but upset and frustrated. It's so tiring spending that amount of time on the phone every day and getting NO WHERE.

Something I wrote....

I have a great friend named Janie, she is a teacher and works with special ed students and parents also. She asked me to write something about what it's like to be a special needs parent. She already had a copy of the "Welcome To Holland" poem WHICH BY THE WAY IS SO TRUE and I suggest if you havent read it to google it.

This is what I wrote for Janie, I wrote it all at once without stopping and then read it a few days later and was amazed at how well I got all my feeings out so quickly.

Here it is:

When you are told you have a "special" child it is literally like a punch to the stomach. You see all these dreams and plans for your child disapear all in an instant and you are left with total uncertainty. As a parent all sense of control is lost. You are no longer "normal". Your family is different. You feel isolated. You struggle to maintain as much normalcy as possible. There are constant reminders everywhere.....seeing a child the same age as yours is enough to bring you to your knees. You can't help but realize your child should be doing the same things that child is doing. The farther away your child is from that "normal" the more this affects you. What's ironic is that you suddenly feel a "connection" to children in wheelchairs, with trachs, g tubes and other things that previously would have scared the heck out of you. You look in their parents eyes and you know they "know" and there is a bond there...without even speaking a word.
The one thing you desire the most is just to be treated as a normal family. To you this is normal now. You come to HATE the "I feel sorry for you" look. Some questions and comments you are asked by complete strangers can leave you in tears, some will leave you speechless. You don't mind people being interested in your child BUT any parents would be hurt and offended by a question like "What's wrong with him/her"? Instead of starting off a coversation with something so negative, it's nice to hear "Wow what a cutie!" or "That's a cool shirt" or even "what beautiful eyes". Sometimes even if you are approached in the proper way by a caring person, it's just too much, you don't want to give details, you have had a bad day BUT feel obligated to explain your child to this stranger whom you most likely will never see again...just to avoid being rude. You find yourself coming up with clever answers to questions that have left you speechless so you won't be taken off guard next time. You desparately want everyone to see the happiness your child does bring you, the amazing spirit your child has and what a fighter your child is forced to be, instead most people just look at the disability. Then you feel compelled to educate everyone.
All in all I would say that we want to be treated normally, like anyone else. To us THIS IS normal and we have adjusted to this new life and new way of thinking.. It's when our child's differences are pointed out, scrutinized and picked apart that we are once again forced to think about what really is normal.

Who can really say?

I have a confession to make.......

I love reality TV.

There I said it.

My favorites are Super Nanny, Meet Your New Mommy (both of these make me appreciate Makily EVEN MORE since she is such a good girl), The Real World, Road Rules...all their challenges (although sometimes I watch them and think WHAT A BUNCH OF WEINEES, have any of them EVER had a REAL job?). I like Makeover shows....all of them. I know, it's terrible.

I was watching The Bachelor special edition last week and it was about all the awkward moments on the shows. This one girl wrote THE DORKIEST poem FOR EVERY single situation she was in. She was attractive but as soon as she began reciting her horrible poems I found myself covering my face in embarrasement for her. Why oh why didnt anyone ever kindly take her to the side and say "i know you love your poems and all but keep them to yourself....at least while on National TV".

Which leads me to my guiltiest pleasure....America Idol. Oh that is my favorite and God forgive me I don't even like the competing episodes that much......I LIVE FOR THE AUDITIONS! While I also find myself covering my face in embarrasment for many of the people on the show....it's like a car wreck you can't help but watch in amazement as these people make TOTAL fools of themselves for their 15-30 secs of "fame". I often wonder do these people not have a friend, a momma, a daddy SOMEBODY that loves them enough to say "YOU CAN'T SING PLEASE DON'T GO ON THAT SHOW AND MAKE A FOOL OF YOURSELF!" The ones that dress up really crack me up. The most memorable one so far this year was the guy dressed up in a short dress with braided piggy tails singing "Moulan Rouge" and dancing....BADLY. Allen was like "what the heck is that thing?!?!"

Today Allen and I watched a few episodes of Flavor of Love. If you havent seen it, it's on VH1 and stars Flavor Flav.....I know this is mean but just looking at him on TV makes me feel like I should go shower....he's just a grungy little man ya know? And the clock he wears around his neck confuses me. Can he not see well? Will a regular watch on the wrist not work for him? Anyway the show is alot like the bachelor....yes Flavor Flav is the bachelor and there are honestly women competing for the grubby little man. It gives me the creeps....the women are also attractive so I have to guess they are in it for the money and exposure. He had a challenge of which girl could make the best fried chicken. Well one of the gals was such a bing bong she took a whole chicken.....stuffed it with raw vegetables and put it in the microwave. Can you say Salmonilla......E-Coli? He didnt pick her. LOLOL

Another one that I am getting ready to go watch that I wait every week for is "Intervention". It highlights the ins and outs of life with an addiction and at the end of the show the whole family does an intervention on the person with the addiction. I really like the ones where the people get their lives together. There have been several that went to rehab and then slid backwards after a while......also many have succeeded. I am off to watch my show!!

Things are looking up.....sort of

Well Makily has been the happiest baby this week. She has laughed and giggled at me and her Daddy so much, NOTHING makes me feel like I do when she laughs. It's the sweetest sound.

After a million phone calls, sitting on hold for LONG periods of time and being hung up on "accidentally" I finally got an answer about the insurance paying for Makily's formula or not. THEY WILL!!! This is huge for Allen and I as we have been paying close to $500/month on formula ALONE for Makily since she was 6 weeks old. I have been able to get it off ebay several times and that helps alot as it's cheaper there. So instead of $500/month we will have to pay $100, insurance covers 80% of it. I am going to *try* to see if CMS will cover the remainder but I won't hold my breath. I havent got them to do very much for us as of yet so I am not too hopeful.

Allen has to leave at 4am for work in the morning. He SHOULD have been home til Tuesday but Closetmaid is having scheduling issues so Allen is stuck on a different run. BLECH! I shouldnt complain we are fortunate he has a job that provides for us and are flexible when it comes to Makily. I am selfish though and want him around all the time.

I want to do something nice and romantic for Allen for Valentines Day but I have no clue what we could do cause we are sooo broke. I am praying Allen gets his W2 soon so we can go file our taxes and get our money back and catch up our bills. I doubt we will get it in time for Valentine's Day though. I also have the truck up for sale and hopefully that will sell fast! We may just do the dinner and a movie thing and see if my mom will keep Makily.

That's all for now, pretty boring update, yes I know.

Feeling rather blaaaa.

I have no motivation to do anything right now. I don't really know why. I am bored, tired and for some reason just feel like sitting and staring at the wall. Pathetic yes I know. Allen took Makily to therapy today and I am sitting here trying to work up the motivation to go and take a shower. I don't know why I get like this sometimes but I really hate it. I feel like a cow and I need to get back on my diet. I have seriously neglected that and myself lately. I feel so much better when I am out and about excersizing and doing things. I just need to get my butt moving and I just have no motivation right now. I can't sleep at night and then feel like a zombie during the day because when I do finally sleep it's fitfull and I am having weird, sad, and sometimes really crazy dreams. I got really frustrating last night with Makily's eating. I try so hard to get her to eat and I just felt like giving up last night. She will have a mouthfull of food play with it for a while......sometimes if I am lucky she will swallow a small amount and then spit the rest. I feel so defeated with her eating sometimes. UGH!!! I am not giving up I just am feeling a little down about it today.
We are broke as jokes right now and that makes me mad. Income tax time is soon though so I know that will catch us up quite a bit. We are also planning on selling the truck.....as much as I hate too we need the money and it's a gas hog. It sucks because once we sell it I will have to drive Allen back and forth to work in the middle of the night sometimes. This is not going to do much for my sleeping habits and getting them back to "normal" but I guess you do what ya gotta do.
That's all for now. I am going to go take a shower. *yawn*
I

Thought I would share

One of the most embarrasing moments of my entire life. While at the time IT WAS NOT FUNNY, now I look back and laugh hysterically at myself. Enjoy!

So when I as 22 ( 6 years ago!oh my! ) Me, Trish and Cathie found out there was a lady starting hip hop dance classes in Ocala. Well the 3 of us danced together in high school and thought it would be fun to take the class.

There were a couple of "downfalls" to the class. The main one being it was mostly teenagers. There was maybe 4 or 5 others older than us but still, teenagers can be annoying at times.
The good thing was it was a GREAT work out and BOY WE WERE SO SKINNY BACK THEN.....we would leave and be so sweaty it looked like we had jumped in a pool NO LIE. IT WAS GREAT......plus we were 3 of the best in the class if I do say so myself.

So onto my shame.

We decide that WHAT THE HELL we will be in the recital that year.

We danced to......are ya ready?

Don't laugh too hard....

Rhythm Nation by Janet Jackson

So we are shown our costumes and they are U-G-L-Y....I AM TALKING IT LOOKED LIKE A TRASH BAG, but again we were in it for the fun of it so the trashbags we would wear....not happily but we would wear them.....we also were forced to do our hair like the "Simply Irresistible" girls. If that wasnt enough we had to glue rhinestones in our hair in the shape of a barrette.......lovely...

I am not even to the embarassing part.......are you dying yet?

While the song is kinda LAME and rather old the routine was really cool. The beginning was started out in pitch, black darkness and we did a neat thing with flashlights.....IT WAS COOL REALLY IT WAS, YOU HAD TO SEE IT, I know sounds lame but it wasnt. When the flashlights part was over everyone gets off the stage.........the lights turn on and a group of us dramatically come sliding out onto the stage on our knees..............
are ya with me?

Well as I mentioned earlier our costumes were like black trashbags....literally, the material was really slick and EXTREMELY THIN. Oh yeah and we werent aloud to wear underwear.....we had to wear black tights.

Okay now for the humility of it all:

I am standing just off stage after our flashlight part......I am pumped up for my GRAND ENTRANCE onto the stage, my dramatic slide that I have worked so hard on for months and months to perfect........the slide that I have bruised my knees for and ripped several pair of dance pants in the knees learning to do. I am SOOO ready to get out there and SHAKE MY BOOTY!

The lights COME ON

I take a running start.........


...........I slide professionally across the floor when IT HAPPENS......



What is that draft?


I look down..................



MY WORST NIGHTMARE.




When I slid....my pants slid.............



ALL THE WAY DOWN TO MY KNEES!


It happened so quickly....My mind was racing...................

WHAT DO I DO??

.....the next "move" was kind of a fan of the legs and then a hop up to your feet.....instead I did some AWFUL jacked up backspin, and while on my back and pulled my pants up....very quickly.

The whole routine, all I could think of was that the ENTIRE audience saw my PRIVATE REGIONS!
Near the end......Cathie is next to me....we turn to the right and so her back is to me and my front is to her back.....I am still MORTIFIED but "the show must go on" so I am dancing as hard as I can with a fake plastered on smile Our next move was sort of a bend and then you stick our butt out.....Cathie bends and what happens?


I notice her pants are split right down the middle.....and with each shake, bend and wiggle, I CAN SEE HER BUTT CRACK!!! HAHAHAHAHAHAAAAAA

Trish is the only one of us that didnt have a costume malfunction of some sort.....I wasnt the only gal who lost her pants during that dance or split her pants for that matter........I am *told* no one noticed......
I am wondering if they are just being nice though!!!

Is it just me or....

have ya noticed that customer service as a whole these days REALLY STINKS!? Since having Makily I have been appalled at some of the "customer service" we have recieved whether it be through a hospital, doctor's office, insurance company or even just at Walmart.
So today I call our insurance company for 2 reasons. 1. To get a nurse case manager for Makily at the insurance company. I have been urged to do this since I had her by a number of people. Basically they assign a RN to your case and when you call with questions or problems they handle things. It is MUCH easier because when you get "regular customer service" they have NO medical background and I end up giving anatomy lessons to these people and explaining each of Makily's diagnosis. This is very annoying. And 2. To see how and if I get somehow get them to pay for Makily's formula.
So I call the customer service number, I explain that I need a nurse case manager for Makily and asked her about the formula. Well for the nurse case manager (ncm) she would have to transfer me. I informed her of the Florida MANDATE that states if a baby is born in the state of Florida with a cleft (or really any other congenital malformation) that everything to do with it's care legally has to be covered by the insurance company. She then tells me that whether it was mandated OR NOT if it was not in their care plan they didnt have to pay it. This is NOT TRUE and I asked how on earth she was able to get around that. She ignored my question and asked me what medical problems Makily had. When I got to "low muscle tone" she said "what's that?" AHHHHHHHHHHHHHHH This is exactly why I just want a nurse case worker! I said "Please just transfer me to the nurse caseworker dept please...I will have her figure this out." So she puts me on hold for a long time comes back and says "Mrs. Caldwell, I am transferring you to Marc an RN he will help you". I say okay and then hear BEEP BEEP BEEP BEEP BEEP BEEP BEEP......we were disconnected. I hung up, hysterically laughed for about 10 minutes (to keep from screaming and/or crying) and called back. I won't describe the rest of my communication with them because well it's as long, confusing and annoying as what I just wrote but basically I STILL HAVE NO CASE WORKER but we *may* have her formula covered FINALLY. I will believe it when I see the first bill for her formula that they pay.
Another place that I seem to have great luck(are you sensing my sarcasm here?) with customer service is Walmart. Ask anyone that knows me I LOVE Walmart. I frequent there at least 3-4 times a week. Recently I found myself there at 1 or 2 AM. I went for fun if you can believe that. Makily and I hadnt been out of the house in days and I had to get out. She was NOT SLEEPING well so I figured hey since we're both up, let's go to Walmart......besides it's the only place open that late at night! So we wander around. I pick up some formula (story of my life), toiletries, baby wipes and a few other neccessities. I go to the express lane and begin putting my items on the belt. No one is in the store mind you...it's pretty dead. The cashier walks up, looks at me like she is VERY ANNOYED (I had disturbed her from stocking the ever important ciggarrette case) and says "How many items is that Ma'am". I looked at her and said "uh I am not sure, I didnt count them out". Her reply is "well this IS 10 items or less". So I count my items and I AM REALLY ANGRY that this woman is seriously making me count them. I count 11.....she ROLLS HER EYES AND SIGHS A DISGUSTED SIGH and picks up my first item off the belt to scan it. THAT WAS IT!! I snatched the item she was attempting to scan out of her hand and grabbed the rest of my 10 items off the belt. I said "EXCUSE ME FOR EXPECTING YOU TO DO YOUR JOB, I WILL FIND SOMEONE ELSE TO DO YOUR JOB FOR YOU". She then states that "THE SIGN SAYS 10 ITEMS OR LESS MA'AM....." I said "lady if you are gonna make that big of a deal OVER ONE MEASELEY ITEM, I would rather you NOT do me the favor of checking me out. THANKS ALOT!!!"
While now I realize that it wasnt that big of a deal, and maybe I shouldnt have gotten sooo angry, I still don't understand the way people think anymore sometimes. I mean REALLY who would make that big of a deal over 1 item? WHO DOES THAT....AND WHY? I guess it's partially that I was brought up to be nice, the saying "if you don't have anything nice to say don't say anything at all" was a common one in my house growing up. I worked in customer service for years and I NEVER would have said some of the things that have been said to me.
Okay off my soapbox now. End Rant!

It's cold outside BUT THE SUN IS SHINING....

Sorry I havent updated here in a few days. My last entry was pretty depressing. I am feeling like myself again. Things are definitly 100 times better than they were Wednesday. We took Makily in to the surgeon, he decided we needed to let Makily's stoma heal up some, so Friday morning we took it out at 6am, made a trek back to Orlando and met the doctor at 10am at the hospital. He put Makily's button in, which was rather painful for her BUT it hasnt leaked since. PRAISE THE LORD! Makily is back to her happy, giggly self. She has slept alot the last 2 days but I assume she is catching up for all the sleep she lost being in pain and sick. She is such a tough little cookie.
I feel like a huge weight has been lifted from me. It's such a relief knowing Makily is okay now and that her button is working the way it should. Thanks to all who have been praying for her, I know that God hears you all.
Allen is still home on vacation but has to leave for work tonight. His new run would normally have him leaving on Tuesday but he has to cover the Florida run this week because the other guy is on vacation. We still get to go to church this morning as a family so I am happy about that.
Today is a good day.

Today was hard........

But ended good.
First off I want to say that I hate the fact that the last several blog entries of mine have been depressing. I try to include the fun and bright spots in my life because IT IS NOT always gloom and doom. This is just a very trying time for me and I started this blog for 2 reasons. 1. To get my feelings out and not bottle up certain things. 2. To help any other parent out there experiencing the same things I am going through. So I am gonna just spill my guts tonight and I apologize if I upset anyone. It's not my intention. This blog is therapy for me.
So today Allen and Justin were going to go fishing. While they were gone Trish's (my friend...yes her name is Trish also)little girl Cameron was having gymnastics class. I figured I would tag along and help Trish because she also has a little peanut named Aubrey(whom by the way is my God daughter and 10 weeks old). So we get to the gym, Aubrey is sleeping peacefully in her carseat and Makily is sound asleep on my chest. I was tired because Makily was up and down last night with her button leaking. Cameron and her mamma bounce off onto the floor to get ready for class. It was humorous watching a group of 2 years olds doing some of this stuff. They are so funny and energetic. I love to watch Cameron "jump, jump" as she says. She does this cute thing where one foot comes off the ground and the other one goes up on her tip toe.....it's like a little troll hop! She thinks it's a load of fun though and encourages me to do it with her often by saying "jump tish jump"...sometimes she will call me Allen but hey whatever works! Anyway as I was watching these kids jump, tumble, roll, squat I start feeling this AWFUL tugg at my heart. I kept imagining Makily out there hand in hand with Cameron jumping up and down, giggling like maniacs screaming JUMP, JUMP!! The image was almost too much for me and I had to stop thinking about it so I wouldnt start crying. Then I notice this beautiful little girl. She had blonde curly hair like Makily's and gorgeous blue eyes. She was all over the place jumping and playing. My heart sank. I can't begin to express the longing in my heart to see Makily jumping, playing and laughing and screaming like that. I want her so much to have fun and sometimes I just feel like she got gipped in this world. I would give my left arm to have that vision of her and Cameron playing and jumping hand in hand come true. I am also reminded of the innocence in children through Cameron. SHE ADORES MAKILY. If we would let her she would carry her everywhere with her. When I take Makily's bib off....if Cameron can get to it, she will put it around her neck....wet, nasty and slobbery, she doesnt mind. Any other time you would try to make Cameron wear a bib, she screams, she hates bibs......it's Makily's bib, so it's "cool". She doesnt look at the differences in Makily. She just knows that Makily is her friend and that she loves her....this touches my heart in ways I cannott describe and I have tears in my eyes as I type this. We won't let Cameron get to close to Makily because well she can tend to get excited but we do let her rub Makily's head sometimes and she will look up at me and say "Kily....soft?"
Allen and I came home after the class and I just had a hard time. I was thinking about all the things Makily is missing out on and all the things as her mother I am missing out on and I cried all the way home. I cried about the fact that I shouldnt even really worry about her jumping....I have to focus on her eating, walking and such right now. Sometimes it seems like such a long road. It's hard for me to see the light at the end of the tunnell when Makily's having medical problems. Alot of the time I feel like I have 800 balls up in the air......things like feeding, breathing, leaking, dumping, retching, heart problems, ear problems, surgeries, diarrhea, medication, drs appts. that for the most part I have learned to handle all 800 of those "balls". It's when you throw in one more ball, I drop them all. I have learned to adjust to "my new normal" and handle my every day life, but when it comes to Makily having a medical problem, I feel useless almost. I just want to solve the problem and when I can't, it drives me crazy. THe last 2 weeks when Makily cries I get a knot in my stomach and my anxiety level gets so high. The entire time I am thinking "oh god please let her stop crying, her stomach will start leaking and then will bleed, please let me figure out what is wrong". The longer I can't calm her the more anxious I get. Last night was pretty bad and her belly did start to bleed some because we couldnt calm her fast enough. I hate it that I can't be positive right now, I feel defeated and VERY sad....my heart aches for so many things tonight. I have cried on and off all day long.
I did get out for about 4 hours of fun. Myself and 4 other girlfriends from high school went out and spent some time together, we laughed and joked and had such a good time and I REALLY NEEDED THAT. Cathie, Marissa, Kristy and Trish, thank you for bringing me some joy tonight you guys make me feel young again and I am so greatfull we are are still friends and still keep in touch...Marissa, I am sorry I laughed so hard at you...but OMG , THAT NAME, OH THAT NAME.....TOO FUNNY....well you know and I will leave it at that.
We take Makily to see the surgeon tomorrow. I will update when I can.

I got to sleep for 10 hours....straight!

Allen got home yesterday from work, he is on vacation for the next week..PRAISE THE LORD! Seriously though it is such a big help to have two pairs of hands here with Makily than just one. Instead of me having to put her down to draw her bath or grab whatever I need for her Allen can hold her...this reduces the amount of crying she does which reduces the leaking. Yes it's still leaking. I am more at ease though since I have help and I am not alone. I was starting to really go off the deep end again. Makily continues to INSIST on watching SpongeBob, Madagascar or Nemo while she is awake. For some reason this is the only thing that calms her sometimes so let's just say I know all of the season 2 Spongebob episodes by heart.
My parents came over yesterday. They brought over a can of formula and a pack of diapers. I told them they didnt have to do that but well that's just the way they are. I do not know how I would have made it through alot of all of this without them.
Anyway last night I went to bed about 4am and slept until 2 pm! Is that crazy or what!? I feel like a person again.....I even showered AND shaved last night! OH THE LITTLE THINGS EH!?
As far as my little angel she is still leaking and we are juggling feedings, calories, leaking, nutrition and it's so tiring for her and for us. I have discovered that if you lay her flat and feed her that way and keep her that way for about 30 mins after the feed she doesnt leak hardly at all. Problem is she has a cough from hell and severe reflux so she started gagging and retching once yesterday when we did that.
I am pretty sure we will have to go see the surgeon on Thursday....don't get me wrong, I am still believing that God can heal this and make it stop but it doesnt seem to be getting better. Keep praying for us.

Thought I would add a new video for today......this song is one I listen to when I am really stressed or when I am jogging (something my fat butt needs to do really bad and I plan on starting tomorrow!) While it is an angry song it helps me get my agression out!
ENJOY!
CLICK PLAY:

ONE STEP CLOSER (Linkin Park)

Video Code provided by VideoCodeZone.Com

Unanswered Prayers, Faith and Fate

So last night was not soo great....again. After feeding Makily via the pump for a few hours I discovered the button is still leaking. Not as bad as before but....it's leaking. I am frustrated and so tired. I spent alot of my evening tending to Makily, changing gauze on her tummy and scouring the internet for some parent that has gone through this and that has some MIRACLE solution to the leaky G tube issue. No miracle solution was found....
I had a little breakdown about all this last night. I had changed Makily's gauze for the 800th time and just lost it. I keep having visions of her with that tube in her nose again. GOD PLEASE NOT AGAIN. I ended up knealing(did I spell that right?) down next to her, laying hands on her button and BEGGING God to heal whatever is wrong and take away the pain Makily is dealing with because of the leaking. I prayed that whatever tissue or muscle is broken down to PLEASE build it back up again, fix whatever is wrong, make it right. I turned off the pump, put more ointment on her belly and vowed that it would be healed. I woke up this morning and the gauze was wet. I was mad, I don't understand, why can't it just be easy? Then I remind myself that THERE IS A REASON for EVERY SINGLE unsanswered prayer. I look back at the last 5 years of my life and I would be a complete FOOL not to see how everything in my life led up to this moment that I am sitting her typing this. One thing that proves this to me is this. When Allen and I were trying to get pregnant I prayed and begged God for a baby. I wanted a baby so bad I could taste it. Everywhere I went there were pregnant women, it consumed me. I won't even tell you the rage that I would feel in me when I saw a 15 year old walking around pregnant. Oh the times I would say "God why her and not me?" I had scheduled an appointment with the infertililty doctor for August of 2003, I would have some extensive testing that month and then in September we were planning on doing a artificial insemination cycle. One of the tests I would have had done in August was genetic testing. They would have found my genetic "flaw". I would have known and honestly I don't know if I would have continued trying to get pregnant naturally. I don't think I would have taken the chance. I got pregnant after 15 months of trying and found out on July 25, 2003 (Allen's birthday).....just 3 weeks before I would have had the genetic testing. Just 3 more weeks and I would have known......Makily is meant to be here and meant to be mine and Allen's daughter. I am glad that I didnt have the genetic testing and that I didnt know. I wouldnt have learned all that I have from the last 20 months of my life. I wouldnt be who I am now or where I am without her. Yes the lessons and things I have learned have come with a hefty price, one of which I struggle with....the fact that Makily has suffered so much and dealt with more pain in her short life than most adults ever do. Last night while I was praying over Makily I just kept saying "Lord please take away her pain, please Lord she's just a baby, please". I will never understand why she has to suffer or ANY child has to suffer for that matter. It just doesnt make sense to me. I do believe that God gives special children like Makily "a little extra" to be able to deal with what they go through. She has the sweetest spirit about her and even last night with all the leaking and pain she was dealing with she would calm with something as simple as me rocking her OR her SpongeBob Squarepants DVD's. I will admit there have been a few times the last several days that I havent been able to calm her and those are the times that scare me. I wonder what is happening and I wish to God during those times she could look at me and tell me what is hurting and what I could do to make it stop.
During all of our hospital stays my Dad gave me the idea to steal everything out of the room that was not tied down. At first I said "no way" but then he said "you are paying for all that stuff TAKE IT WITH YOU!" I guess it's not really stealing, more like taking what you are paying for that most people leave. I took things I didnt think I would ever need but I have used alot of the stuff. Some of it I have been able to send to other parents of special needs kids who don't have insurance and need certain supplies. I am not talking ventilators or anything here people, we're talking, tape, gauze, mouth swabs etc etc etc LOLOL. I didnt want everyone to start thinking I was a klepto! One thing I took last year was a tube of lidocaine viscous (numbing gel). They had used it on Makily's tummy once last year at Shands and then never used it again but left it in the room. I took it with me when we left and tonight I mixed it with bactroban and put it on her tummy. It made me feed good that I was able to numb that area at least a little.
Anyway so Dr. Pierre called me this morning to find out how last night went. I love Dr. Pierre. She left a message because when she called Makily and I both had FINALLY zonked out and so when I got up I called her back. I told her about the leaking. She was upset too and suggested I call the surgeon. I did and their answer was simply "It's going to leak, just put gauze around it" . I asked the nurse how long I should expect the leaking and she said if it's not stopped by next Wednesday(1 week) to call them and she will get us in with the surgeon...he is there on Thursdays. She said that when you go to a size up that usually the buttons leak but stop a few days later. It made me feel a little better but on the other hand I HAVE BEEN HERE before and so I am cautiously optimistic that it is going to stop on it's own. BUT I AM PRAYING THAT IT DOES.

*update* Do ya ever think that.....

God is watching you struggle sometimes?

I swear last night I lost track of how many times I looked up and said "can I get a break here?" First of all Makily's leaking just continued all night, I am glad to say I stayed on top of it and that she did sleep some, as for me I was up all night long. If it werent for caffiene I would be a zombie. About 7am this morning she had a SCREECHING crying fit. It really was starting to scare me. I havent seen her freak out and scream like that in a very long time. She was kicking and squirming and flailing her arms all over. It was worse if I put her down. She at one point was crying so hard her little arms and legs were shaking. It was really upsetting me. I was worried because she hadnt pooped all day and kept thinking things like "bowel obstruction". HeR feeding schedule was all messed up and since she has all the belly problems already I was really starting to worry. I got up and rinsed her off in the tub to get all the blood and goo off of her. I went to wrap her in the towel and it got all twisted and so I am fighting with the towel and her and I looked up and said "CAN YA HELP ME OUT HERE GOD!" Makily is VERY impatient so when I am doing something she wants it done and done right the first time (yes I am not kidding, can you imagine having a 19 lb boss?). So since I am a fumbling idiot with the towel and not doing my job efficiently enough for my tiny supervisor.......the screaming begins. I am wanting to scream too because now that she is crying......yes you guessed it, the button starts leaking AGAIN!!!!!! I get her wrapped after much protest, sit on the couch and snuggle her, she calms THANK YOU GOD! She was still fussy but not the writhing fit she had been earlier. I put on "Madagascar" and she immediately gets quiet and intently watches it. This kid is so hard to figure out. Just minutes before she was so hysterical you would have thought I was peeling her skin off. Not long after I decide I need to feed her. I have been bolus feeding her. I attach a tube to her button and at the end of a tube I put a syringe where the formula is poured in. The tube has 2 ports. One for medication...the other for food. Now since we have had all the leaking G tube mess, I had gone through ALL of Makilys blankets. So last night I did an entire load of laundry that was just her blankets, towels and her bouncy seat cover. I have her all clean and happy, watching TV with nice, clean, fresh blanket and CLEAN bouncy seat cover when WOULDNT YA KNOW as I am feeding her the med. port pops open and formula goes everywhere!!! Yes I again looked up and this time said "ARE YOU KIDDING ME!?" Thankfully I caught it fast enough that I got my thumb over the med port and somehow one handedly closed it back. I continue the feeding and with the last 1/2 ounce the med port pops back open, this time spilling on Makily, the bouncy seat, blanket and of course me! Another glare upwards and I scream "THANKS ALOT!!" I get Makily all cleaned up and settled, I left her in the bouncy, just dried everything the best I could. I was afraid if I messed with her too much she would start freaking out again. I know I joke about God "watching me struggle" and how I look up and whine/moan but I know that God IS with Makily and I. I think when I get frustrated though I just expect him to come down and make it all "better" and that is not the way life is. LIFE IS NOT EASY for anyone and so I need to just accept that. There is a reason FOR EVERY SINGLE STRUGGLE you have in your life and in mine. I am learning that.......it's sometimes hard to realize though when you are in the "thick" of things.
Allen came home for his 10 hour break today and not long after the LONG AWAITED new button arrived. I was so happy and left a message for Dr. Pierre to call me and let me know when to meet her at the office to have her put it in. I laid down to try and get a few minutes of rest when I hear Allen say "Oh gross, I HAVE TO TAKE CARE OF THIS RIGHT NOW!!!" I sit straight up and say "is she leaking again, where is the gauze, what's happening" in the sleepiest, half awake voice you can imagine. He says "no look at her!!!!!" Well I look at my angelic little baby, my sweet girl who when she is not ill is the BEST BEHAVED BABY ever, who's smile will light up the entire room and laugh gives me warm fuzzies inside.....and she is C-O-V-E-R-E-D in POOP. She managed to get one side of her diaper open and was "playing" in her doo doo. She had pooped smeared on her face, legs, feet, hands! THE SMELL WAS HORRENDOUS but I have to admit there was a little part of me that was so very happy to see that poop.....obviously no bowel obstruction! hahahahahahaha
We immediately put her in the tub and Daddy cleaned her up, what a great guy eh? Needless to say I will be washing the bouncy seat cover again today! Dr. Pierre called a few minutes later and said to meet her at the office at 1pm. So we get Makily dressed, we decide NOT to do her hair as when you brush her hair she cries.....which will cause the dang button to leak. So I go in a pair of jeans, my unwashed hair in a pony tail, no makeup and Makily in a sleeper looking like her hair hadnt been brushed in ages...when it really has only been about 12 hours! She has UNMANAGABLE HAIR! I use conditioner AND infusium on it! Allen was the only one of us that looked decent but I was so tired I didnt care. We get to Dr. Pierre's office and Makily is sleeping like a log. We get things set up, I am on the table with Makily. When Dr. P took the button out Makily woke up and started crying. Dr. P had to cauterize more than I thought she would have to because the skin was breaking down so bad. My poor angel screamed and shook the whole time.....I know it had to hurt like hell. I kept closing my eyes and asking God to make it not hurt so bad....it really sucked. Allen was sitting in the chair with his head down......I wonder if he was praying the same thing. It felt like it took an hour but in reality probably all of about 15 mins. We put some ointment on it, the new button in and now it seems things are as good as new. She fussed for a while but when I walked out of the office she seemed to start to calm and then fell asleep in the car on the way home. I think everything will be fine now. I just hate that she had to go through that and deal with the pain. Makes my heart hurt and I did cry a little when we got in the car. No child should have to deal with this kind of thing. I will never understand it, I guess it's not for me to understand though, God is trying to teach me something.......and I feel like I am learning more every day.

NOT A GOOD DAY...OR NIGHT...

Well Makily's G tube has been leaking on and off for a week now and it got really bad last night. I hate it when the darn thing leaks because I swear I have post traumatic stress from all that happened last year. (that entry is on 12-10-2005). She also has developed a chest cold so I took her to Dr. Pierre's office. I wish things could just be easy for us. None of the home health companies in Ocala has the bigger sized replacement button Makily needs in stock so we have to wait until tomorrow when they overnight it to us to get it. GRRRRRRRRRRRR, I hate that. Anyway Makily and I were up all night and most of today. She is doing well right now (Knock on wood) and I gave her 4 oz about an hour ago and THANKFULLY it didnt leak out...first time in 2 days. I am just praying we can get through tonight and tomorrow.
I am bummed and irritated. When I was in the waiting room at the peds office I noticed these two little boys playing with some toys and being rambunctious(did I spell that right?). The mom kept telling the one boy to be quiet and sit down and it was all I could do not to say NO LET HIM PLAY AND BE A KID, be thankful he is playing and loud because I would do almost anything for that! I wish to God Makily could get up and run around like that....I wish she could scream and yell MAMMA to the top of her lungs when she is happy or sick or just yelling to hear her own voice. I long to watch her run and play and Lord knows what I wouldnt do to hear her say "mamma, i love you". I try not to dwell on these thoughts for too long because I do get really upset about it. It's just hard when she is having problems not to look at the "bad side" of things. I told my mom today "it's bad enough she has to have a tube in her tummy to eat but good Lord can we at least have it work and not leak all over her? Is that too much to ask?"
On top of poor Makily having all these issues at once, I have a wisdom tooth coming in where there is NO ROOM in my mouth AND a "cold sore" inside of my mouth. WHAT FUN. I get cold sores in my mouth when I am stressed so well now I have one. Hooray for me.
That's all the fun and excitement from here in the Caldwell house for tonight.