Wild Waters Fun.

Just pictures today folks.

Busy week.

Will blog more soon.

It's not always about me.

A few weekends ago we and the Teals went to Sonny's for lunch. We are a loud bunch. I alone am loud so add three more adults to that along with four kids all five or under and well, we are a spectacle in a restaurant.

J was in rare form, he had skipped his nap and was eating his lunch late. Makily also was not being her usual Princess self. She was grumpy because her schedule was off.

Trishtwo leaned over to me and said "Those people keep looking at us". I take a quick glance back and sure enough the table behind us was looking. At first I shrugged it off thinking maybe they just were trying to figure out what kids belong to whom and if we would ever quiet down. Makily became so agitated though that Daddy had to take her out of her chair and hold her, she was hooked to the pump when he picked her up and her shirt went up. Her belly was exposed which obviously revealed she had a the feeding tube. It was more obvious because it was TAPED IN at the time. Seconds later Trishtwo again says "Gosh they are still looking at us, if they don't want to hear loud kids they shouldn't go to a family restaurant. I glance again and the Dad and I lock eyes for a brief second, I smile, say "Hi" and turn back around.

At this point I am CONVINCED they are gawking at Makily.

*sigh*

Trishtwo and I begin bantering back and forth about it quietly when Allen says "Hey do you two want to feel like real jerks"?

I say "not really but tell me anyway".

He says "They are bolus feeding the baby behind you".

I felt the blood rush to my head as I turned around quickly to see that Allen was telling the truth. I also noticed the baby had trache ties around her neck.

Usually I have radar for this, how did I miss it!?

I quickly realize that they probably thought WE were staring AT THEM just like we thought THEY were staring AT US.

THE IRONY.

So I whisper to Trishtwo "Should I say something? I can't stand it...I HAVE to say something".

I turn around and say "Hi, that is my daughter Makily she is hooked up to a feeding pump right now, how are you".

Talk about an ice breaker huh?

The whole table started laughing and admitted they had assumed we were staring at them because the Dad was feeding her....plus she had the trache and they get stupid comments about her all the time.

We talked back and forth, they told me about their little girl who was THE CUTEST LITTLE PEANUT EVER! She was reaching her hand out to me as I was talking to them. So sweet. She had many of the same complications and surgeries that Makily has had. It was refreshing to talk to them. I gave the mom my email address and blog addy. She contacted me this week.

WHAT ARE THE CHANCES THAT TWO TUBE FEEDING KIDS WOULD BE SEATING RIGHT NEXT TO ONE ANOTHER?

Slim chance.......I happen to think our meeting was for a reason.

What that reason is, I don't know.....I'll just add it to my list of one of those "things".

The Invasion of the Crud.

Sorry for my lack of blogging.

The crud officially invaded here and we are now officially "The Snot Family".

Sounds lovely doesn't it?

I had been congested all week last week but it was really only bothering me at night so I ignored it.

Makily was really bad Thursday night so we kept her home Friday and took her to Dr. Pierre. We came home with Singulair, Prednisolone, breathing treatments q4 (for the lay person that's every four hours.....I sometimes miss using DOCTOR lingo...I DON'T miss office politics though.....I am such a dork).

ANYHOO

She was perked up already it seemed by Saturday.

Saturday day we went to the Square for the "Dance Festival". It was really nice, saw lots of old friends I haven't seen in a while and they all doted on Makily and J. Someone recognized me from Ocalamom and I felt famous! LOLOLOLOLOL Seriously I felt my head swell.......Allen just rolled his eyes at me and my head quickly deflated!

Since Doodle was doing somewhat better Allen and I went out dancing with the Teals while Granny doted on Makily and J.

Well I learned my lesson, I'm too old to go out on the town when I have a little bit of a cold. I woke up Sunday morning feeling like someone had shoved tissue up my nose clear to my brain. I had the headache from HELL (and no it was not a hangover for those thinking that LOL) SINUS PRESSURE IS AWFUL! Allen bought EXTRA STRENGTH nasal spray. I didn't know what the difference was....that is until I used it. GOOD LORD ALMIGHTY IN HEAVEN........It was so strong I thought my eyes were going to pop out of my head. It was like spraying Tabasco sauce up my nose. My eye sockets hurt the rest of the day. Thanks Allen.

Makily was still snotty Sunday, J was starting to run and then of course Allen started with it later in the day. Makily had a sleep study scheduled for Sunday night. I cancelled because I just wouldn't have trusted the results of a sleep study she did while she had a cold.

sigh

I had a doctors appt for today that I cancelled. J is still snotty and now poor Granny has the crud so I have no one to keep him while I go to the doctor(sorry Granny, I fear we gave this to you, you can't ever say we never gave you anything....he he he). I rescheduled it for next month. I hate going to the doctor for me. HATE IT. I know likely he is going to tell me I'm too fat, and that I need to eat better and take better care of myself which I really do. I hope by next month I will be in at least a little better shape that I won't be so worried about him saying "Hey fatty lay off the big macs".

sigh.

Anyhoo, I'm going to be at the March of Dimes this weekend for OCALAMOM. It's Saturday and I am super excited about being involved. Makily spent a month in the NICU so MOD has a special place in my heart.

We may go to Wild Waters with the kids afterwards. Oh we DID go weekend before last and HOLY MOLY it was COLD. Poor little J shook and his lips quivered but he was smiling and giggling sooo much. Makily just laid in my arms while I sang to her and "talked" to me. She fell asleep like that which TOTALLY made my entire day. We only stayed a few hours since it was not warm enough....although the weather man claimed it would be at least in the 80's...he so lied. We have passes though so we'll get lots of use out of them.


Will try to do a more interesting blog entry today maybe with pics. I do have an interesting "meeting" I want to blog. It's yet another one of those times that I say "I hear you God". I haven't wanted to listen to him lately for MANY MANY reasons that I won't get into here. Some of which has to do with Makily and with J, not them personally but circumstances surrounding them and their precious lives. I have found myself questioning things a lot lately and I don't know what that means. Maybe it just means I'm a normal human being (stop laughing....I'm sort of normal). More on this later.

She's a Mean Bongo Player.

Some clips here of Makily playing with her favorite Speech Therapist Elon Bruner w/Therakids.

Make an on-line slideshow at www.OneTrueMedia.com

The NEW BUTTON!

Makily has had her new AMT mini button in for one week now.

It's working BEAUTIFULLY.

I like it so much better. It's WAY flatter and smaller. It's more flexible so it moves more with her. It's leaked a smidge but nothing that's a big deal. Cool thing is it's really the same concept as the Mic-Key button, just a little different. I keep using Pampers and Huggies to compare them. Same thing just different brand....some people like one more than the other.

As long as this thing does not start popping pin holes in the balloons Makily will forever be an AMT girl. I also would love to find out what the difference is in the make up of the balloons for the AMT vs. the Mic-Key.

I wish we would have tried it sooner.

So if you have a child with a Mic-Key button that keeps developing a pin hole within days to weeks of inserting it, I highly recommend trying the AMT.

**I just re-read through this post and I sound like a television commercial.**

*Note: I reserve the right to completely change my tune about the AMT if for some reason it too starts popping pin holes......this review was made after just one week of use. Actually if the AMT starts popping pin holes like the Mic-Key's did then likely it's an anatomical issue with Makily and not the button after all. Let's hope it was just the Mic-Key right?

Here's a short vid just showing the differences in the two brands and after putting it in Makily's tummy.

Make video montages at www.OneTrueMedia.com

Easter.......

Went to Nanny's.

Had an egg hunt, celebrated Herman, Nanny and Delaney's April birthdays.

It was great fun.

Enjoy the pics.......will be playing blog catch up this week, lots to talk about.











Delaney


Makily in all of her Princess Glory




A baby with eggs.


Hunting eggs....


Baby finds an egg!


Delaney found one in the tree! Micah's got a bag full!


I SEE IT!


Cool angle.


Makily and Me

Photo and video editing at www.OneTrueMedia.com

Doodles Party with PICTURES GALORE.

Today went so well.



Everything was really laid back. Makily was in a WONDERFUL mood. She got lots of presents and was loved on all day long. Just want the Princess deserves.



I have had a few of you ask where we get Makily's clothes. I am a shopper when it comes to dressing her! I love to look and find JUST the perfect dress for her. The "bee" dress in her photo shoot was from Bealls, it was 40% off. I almost never buy ANYTHING full price unless it's SCREAMING at me to come get it. The dress she has on in today's pics actually was $7.99 at a local consignment shop I love. Some of the hair things I have made, had made for her or bought off ebay.

Anyway here are pics from her party and I am throwing in a few more miscellaneous ones from the last week.




Goldilocks aka Aurora.


Those sweet feet of hers.





This one is kind of "interesting". Her stander in the back and her pump in the front.




Easter Dress from Nanny and Papa






ADORABLE Dress from Auntie Liz. I asked Allen if he would model all Makily's dresses for me...this is the closest I could get.


Butterfly embroidery....Makily's fav.


SWEET dress from Granny.



The Teal girls picked this out for Makily!


From Cousin Nathaniel, Holly and Hailey


AWESOME blanket made by her Auntie Deborah...it's huge and fits her HUGE Princess bed perfectly. (Raggedy Anne courtesy of Granny)



She LOVES her blanket!



Play Date at the Park


Makily and Bri


Makily and her G.G. (Great Grandmother) on her birthday

Again....

I've lost count of how many we have been through this month.

I think this is NUMBER FOUR of replacements that Kimberly Clark has actually sent us. They are REPLACING the REPLACEMENTS! When I ask what the problem is they can't give me any straight answers. She said that this usually only happens with 1% of their patients only.

I doubt it.

I mean don't me wrong I wouldn't be shocked if Makily was in the rare 1% that had this problem. I just find it hard to believe that it's really only 1%.

This one actually went bad on her birthday. That night when I was putting her to bed, I heard a funky sound.....I knew before I even looked at her tummy it was out. I didn't freak out though, I have put it back in so many times now that it's like putting in an earring.

I am awaiting an AMT button from Apria.

I called them last week saying we had to try a different brand because these Mic-Key's are junk......at least the last 20 of them have been.

They said it may take up to two weeks to arrive since it's not a button the generally keep in stock. I really figured the replacement Mic-Key would last long enough to get the AMT. I was too hopeful.

The last two buttons have lasted seven days or less.

No lie.

I ask you this:

How is it we can send a man TO THE MOON, but we can't make a button with a balloon that does not develop a pin hole within a week?

Birthday Photo Shoot and Stuff.....

Don't you love all my technical quirky titles that include "and stuff"

So yesterday Makily had her "I'm Five" photo shoot. She's gorgeous. Really the kid looks like a doll. My friend Chontee and I went to duck pond and took pics. Well she took pics and I danced around like a fool singing Happy Birthday trying to get smiles.

I made a total ass of myself.

Not the first time I assure you.

When we came home Makily was sleepy so I set her up on the couch and she took a nap, I got some really nice shots of her sleeping. I know I am partial but some of the photos she does not even look "real" to me, she looks like a doll. I have heard that SO many times in the past from other people too.

I'll put the pics at the end of this post.

This year we are doing Makily's birthday differently. Usually we have the huge party with a bounce house and all kinds of other crap. Makily could care less about any of it. We decided to make this year ONLY about things that SHE would enjoy. It's about her and no one else. So we are having a small "open house" with cake (Spongebob of course)this weekend for family.

This is the cake, is it to die for or what? Daddy picked it out and ordered it on his own. It's got strawberry filling. Daddy rocks.



Seriously our friends and family would all shoot me if we didnt at least have something that they could come see Doodles, bring her presents and love on her. Then next weekend we are buying passes to Wild Waters / Silver Springs and spending the day at the park. Makily loves the water, it's good for her and so it's the perfect gift. The passes for BOTH parks are only like $50 that's for the entire year. Totally worth it since we will go so much and it's literally less than five miles from our house.

So here are the pictures of my big girl on her big day.

The "awake" park pictures were taken by Chontee and all the sleeping pictures were taken by me here at the house.

She's beautiful.



She really has an angel face, I love this one.


The infamous "squint, squint"


Cute one, we could not keep her straps up, her little shoulders are so low tone!


Emanuel Syndrome hands......it's amazing to me that all these children just LOVE their hands....Makily used to be obsessed. The older she gets the less she does it but she used to have NO interest in anything but those sweet hands of hers.


Doll Baby


Look at the little "dimple".


BIG GIRL!



The bow (not the clippy that's ebay) in her hair by the way was made by another Emanuel Syndrome mom. Jen, that bow is so special to me and I think of you and Jackson each time I look at it.

A nap (she looks like a doll in this one)


She's got great hair


I couldnt get this one unblurred, i like it anyways


"Flintstone Feet"


Too perfect to be real.




My love




Sleeping Beauty

Dedicated to Makily.

I had thought about going through and re-hashing the two days I was in labor here on my blog.

I actually started to do it....I did the first night.....I began writing the second night.....

I am not going to finish it here.

I already wrote it out in the "How it all started" section of my blog to the right.

What is the point in rehashing it all right now?

It always ends the same, Makily's birth and life is NOT what I had dreamed it would be.

I hurts like hell but I can't change it.

I am determined that today.....I am going to try my best to focus on the positive.

Today should be about Makily and not me right?

I am going to focus on how far she has come and not how much she has lost.




To My Dearest Makily,

Today my sweet girl, you are five years old. FIVE. Where has the time gone? It seems like just yesterday they placed you in my arms. You were so tiny and so sick. I didn't know what to do. I saw the worry in every one's eyes as I held you, Dr. Pierre even looked nervous. She looked at me though and while patting my arm said "She's feisty Trish, just like her momma". I don't think ANY of us had any idea how feisty you really were, you sure planned on showing us though didn't you?

You fought so hard that first year.

We lived at the doctor and each time we went they told us something else that was "wrong" or needed to be fixed. We were in the hospital all the time. You kept going though. You wouldn't give up.

The odds stacked higher and higher against you, your doctors failed you, you suffered with incredible pain, your own Mother began to crumble at all of this but YOU refused to give in. You continued to fight for every breath you took, every hour, every second and every minute of your precious life you reamain determined. Many adults (myself included) would have given up with just half of what you were going through........but you just kept going.

I am in awe of your will to live and your strength.

When you smile at me my heart totally melts. I waited so long for a full out grin from you and it was well worth the wait. You light up the room, you truly do. Your laugh is the sweetest sound I have ever heard. The roof could be caving in on us and your laugh could make me smile anyway.

I love it that even though you can't talk you have figured out ways to get the things you really want. I love that I have learned your unique language and that I know what just about every sigh, squeal, cry and snicker mean. I know when you kick your leg over the other that you are fighting sleep, when you shake your head back and forth you are usually bored, when your arms get stiff you are excited, when you "patt patt" that's your way of saying "i love you, your pretty cool". I also realize that when you are screaming at the TV it usual means there is a commercial on and thanks to Granny spoiling the heck out of you, you are not used to having to sit through those (dang TIVO).

Although your life is not what I wanted it to be and not what I feel you deserve (let's face it you deserve the world and then some), you are happy and you have joy.

Isn't that what all parents want for their children?

Pure Happiness.

Pure Joy.

How lucky I am that I know you have that each and every day.

You have changed me in ways I never imagined and taught me more than I will ever teach you in a lifetime. You are loved and cherished by so many and I am so blessed to be your Mommy. Thank you for making me who I am today, for giving me strength I never thought I would possibly possess.

Thank you for loving me no matter how crazy I am or how hard I push you sometimes.

Thank you for your "patt patts" and for holding my hand even though that's hard for you sometimes.

Thank you for forgiving me for all the mistakes I have made. I know there are lots of them and I am sorry. I'm learning a lot of all this stuff with you.

Mostly thank you for the joy your bring to my heart.

Happy 5th birthday my baby girl, you have fought for each day and you are truly my hero forever.

I love you always my angel, Makily.

Love
Mommy.