Hypotonic Baby + 31 degree weather = Scatterbrained Mamma!

Last night it was C-O-L-D.

It was supposed to get down to 27 degrees here in Central Florida last night. All you Northerners are probably laughing at me but for this Native Florida gal...THAT'S COLD!

I put Makily in bed with me because she WILL NOT sleep with a blanket on her. She kicks it off IMMEDIATELY. When you put it back on she thinks it's a fun game and giggles while kicking it right back off. If I put her in with me I can throw a blanket over her when she falls asleep.

Usually she sleeps in just a diaper and bib.

Why no footed sleeper you ask?

I have a HORRIBLE time finding footed sleepers that are snap up (don't like the zips ups because it's hard to access the G tube). FORGET finding a snap up one in a 4t. For some reason they area all zip ups. I went ahead and bought the zip up footed sleepers a few weeks ago to try. I was really excited and figured I would just cut a hole in the tummy area for G tube access (I know GHETTO). So I put one on Makily to figure out where to put the hole. The only sleepers I could find in her size had a zipper that goes like this one.....notice the zipper goes down one leg?



Well my baby has big thighs and a big ole booty. The leg that it zips up on ends up looking like a stuffed sausage and she gets MAD! Ladies, I imagine it's a lot like when you wear panty hose and somehow one leg gets twisted and ends up cutting the circulation off in that leg. Pretty much what Makily's "sausage zipper leg" looks like.

So for all these reasons I just put her in bed with me.

She slept until about 2:30 AM. Then she decided it was time to chat, whine, kick, giggle and "patt patt" me on the head. This went on until about 5 am when she fell back asleep.

You can imagine how excited I was to get up when the alarm went off at 6 am. I debated whether or not I should send her to school because it was so cold and usually she could get sick from the crazy weather change. I told myself to not be lazy and get up and take her anyway...she'll be fine.

I kept hitting snooze and before I knew it, it was almost seven. Makily has to be to school between 7:15 and 7:45.

YIKES!

I get up and Makily is of course sleeping. I went and got a pair of long johns for her, a warm outfit and her jacket. I woke her (she wasn't thrilled), put both layers of clothes on her (to which she was ZERO help and screamed).

Then I tackled her hair. Makily's hair while GORGEOUS is a NIGHTMARE for ME. She acts like I am killing her when I brush it.. Today was no exception and I think because she knew I was in a hurry she decided she would be EXTRA mean to me. Once I finally got her hair brushed out and beautiful I spent the next five minutes saying "Makily what the heck did I do with your pink squeaks"!?!??! (referring to her pink squeaky shoes).

I finally have her ready and race around getting her bags together. I throw on a jacket and flip flops (can you say icy toes?), grab her, her bags and head to the van. By the time I got to the front door Makily is slipping down my body. When you carry Makily she is ZERO help. She does not "cling" on like most kids....she expects to be totally supported mostly because she is hypotonic. I throw everything down and slide her back up and race to the van. By the time I got there I was carrying her like a foot ball. I put her in the car seat, threw the bags in the front seat when I realize I have no keys.

I run back into the house grab the keys (thankfully in my rush I didn't lock the door)and race back to the van.

I get Makily half way to school when I realize I had left MY LIFE (my wallet) on the hood of the van along with my cell phone in it AGAIN!

Only this time, I didn't see it fly off!

WONDERFUL!

So I drop Makily off at school and drive back and forth three times FEVERISHLY looking for my life.

I didn't find it.

I come home and I am thinking about ALL the cards I have to cancel and duplicates I am going to have request. I go to call and notice there is a strange number on my caller ID.

I check the message THANK GOD, the neighbor up the street called, THEY FOUND MY LIFE!

He said he came out to warm his truck up. He went back inside and when he came back my life was laying on the hood of his truck!!

I was so thankful I almost cried. It did suffer some damage but I am proud of how much it has held up seeings as it has now been thrown from a moving vehicle twice.



To top it all off. The school nurse called me and told me that Makily was really congested and sleeping a lot and that I should come pick her up.

I shouldn't have gotten out of bed!

Losing My Religion.

I have ALWAYS loved music and I am one of those people that will hear a song and say

"Oh this is sooo me!"

Allen likes to make fun of me for this. In the beginning of our relationship he was well....Allen was a jerk and he will tell you that himself. I knew underneath his hard shell there was an amazing guy (I was right ;-) I recall once telling him that "I can't make you love me" was our song. I loved him and he was VERY stand offish early on in our relationship. Not long after that Allen and I were in the car and he says "Oh I heard a song this week and it made me think of us". Of course you can imagine my happiness in that Allen had picked a song that made him think of me right?

He played the song.....it had an incredibly LOOOOOOOONG intro (remember all the while I am waiting with baited breath to hear the words to the song that he thought was "us"). Anyway once the singing started and I realized it was some 80's metal band screaming the words "I want ya to rock me" I wanted to punch him. While he thought it was funny I didn't see the humor. I assure you Allen is a changed man and I have since forgiven him for his evil ways of the past.

So today I decided to go for a walk. I had my IPOD and somehow ended up with music on there that I didn't really mean to put there. Allen has been using it lately and at times I can't seem to figure out how to get his stuff off.

The song "Losing my Religion" by REM came on.

The first memory that sparked from hearing this song was how when it came out how everyone was up in arms about not only the lyrics but the video. I never really paid much attention to the song because in our household it was one of "those" songs and we just didn't listen to it. I didn't really understand it anyway. I was in to New Kids On The Block at the time and was too busy planning my wedding with Joey McIntyre (circa 1991)!

Give a 14 year old girl a break!

The second memory that was sparked was how I listened to this song over and over in the months after Makily was born. While this song is said to have so many meanings the lead singer of REM Michael Stipe who wrote it claims it was about an obsessive relationship.

When Makily was born I had a totally different interpretation of the song.

The lyrics were all the things I felt and wanted to say to God and felt guilty for thinking and wanting to say.

I walked up the driveway of my house and laid in the middle of my yard with my headphones turned backwards, eyes closed and listened to the song over and over. I noticed every now and then I had tears in my eyes. I wonder what my neighbors were thinking I was doing.

I did something I try not to do too often, I let myself think about how I felt in the months after Makily was born.

I was so confused about my entire life.

I felt like I was being forced to be something, someone I couldn't and had no desire to be. I felt that I was being tested and that God knew it was a test I would fail miserably.

I questioned everything I had ever believed and wondered why if God was real would he let my child suffer, force me to watch her suffering, make it my fault she was suffering (since I am a carrier for Makily's genetic problem). To top it off, how could I have more babies knowing that I could have another sick one?

I felt like a fool.

I believed God was laughing at me.

What type of cruel God does that?

It made no sense and it was a constant struggle for me to pray. I hated God. I had begged him to give me a baby and he finally did, and she was near death.

I also felt like I was right in the spotlight. Like everyone around me was waiting for me to fall apart. I tried to pretend I was okay but I was really awful at faking it.

I felt like the "happy normal" life I thought I was going to have once Makily was born was just a fantasy.....a dream that wouldn't come true......ever.

It took me several months, but I started to see how all of this was foreshadowed YEARS before Makily was even born. My life read like a book. God had been preparing me for this all along. It was my destiny. I don't know why he picked me to be Makily's mother.

One of the things I remember thinking vividly when the doctor diagnosed Makily was that I would never laugh again. Never have fun, the good part of my life was over and I was destined to live a life of sorrow, sadness and suffering.

Almost four years later I see that I couldn't have been more wrong.

I am the happiest I have ever been in my life.......and it's BECAUSE of Makily.

Here are a few scriptures that have helped me along the way:

Proverbs 3:5, "Trust in the Lord with all your heart and do not lean on your own understanding."

Psalm 139 : 13-16
For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful,I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

We've come a long way from this...........

Loosing My Religion
by REM

Oh, life is bigger
It's bigger than you
And you are not me
The lengths that I will go to
The distance in your eyes
Oh no, I've said too much
I set it up

(chorus)
That's me in the corner
That's me in the spotlight, I'm
Losing my religion
Trying to keep up with you
And I don't know if I can do it
Oh no, I've said too much
I haven't said enough
I thought that I heard you laughing
I thought that I heard you sing
I think I thought I saw you try

Every whisper
Of every waking hour I'm
Choosing my confessions
Trying to keep an eye on you
Like a hurt lost and blinded fool, fool
Oh no, I've said too much
I set it up
Consider this
Consider this
The hint of the century
Consider this
The slip that brought me
To my knees failed
What if all these fantasies
Come flailing around
Now I've said too much
I thought that I heard you laughing
I thought that I heard you sing
I think I thought I saw you try

But that was just a dream
That was just a dream

(repeat chorus)

But that was just a dream
Try, cry, why try?
That was just a dream
Just a dream, just a dream
Dream

Here's the video, it's kind of freaky and I almost didn't post it on my blog but I wanted you to be able to hear it as well as read the lyrics.

WARNING: Picture Overload

For those that have not seen Makily's caringbridge page yet I am going to be doing ALL of her updates here from now on. It seems like if I am updating one page regularly, I am neglecting the other. I hope that meshing this site with her CB site will make it easier for me to manage. I promise to update on Makily weekly IF NOT DAILY! :-) I also will be moving this around and possibly remodeling the site in the next couple of weeks. Of course all her new pictures will be posted here now.

That being said....I will begin the picture OVERLOAD for today.

Is it Makily or Allen? One may never know!


Shamoo


HOLY COW, DO YOU SEE SHAMOO!?!?


Our hands :-)


Yes I really am this sweet and innocent......really


Cousin Hailey with Aunt Tammy in the background
(I was trying to be photographically unique, Andrea notice the no pants!? lolol)


Cousin Hailey with more bubbles!


Our attempt at getting the girls picture together with them both looking at the camera. For some reason when Hailey sat on the blanket she thought she had to lay down!?


AHCK! Makily's not looking! Cute one any way


Bubbles make her happy!


REALLLY HAPPY!


Just because it's funky


Sleeping Angel in a Wagon


Ugh really what's with all the wires people!? Her last sleep study (Jan 2008)


Shopping it's so exhausting....*sigh*

Whirlwind...

This week has been crazy!

Allen had to have a sleep study on Monday night. He snores like a freight train. So bad that at times I end up getting up in the middle of the night move to the couch.



I figure hey, he has to sleep in a truck during the week for work, I can sleep on the couch when he is home so he can have a bed.

It's a fair trade right?

It's gotten much worse the last couple of years. I half jokingly have been telling him that he dies several times a night. I watch him sleep and have noticed that often he tries to take a breath in three or four times, then usually he will gasp, yell in some strange language (this part usually makes me giggle) and then go back to snoring. I will admit though I have thought of putting my pillow over his head to shut him up (not really people come on now!). He can't help it but really at 3 am when I am desperately trying to sleep all I can hear is his insane SNORE and I start to get mad.

Finally after my nagging him to death for the last three years...he decided to go see a Pulmonologist whom immediately gave him a c-pap just from hearing the description of what Allen does in his sleep. So here is the incredibly sexy mask my man gets to wear at night. (by the way this is not Allen, if I posted pictures of him with his mask on I may have to come live with you).



I know it's hot right?

Imagine this contraption on his face PLUS an even cooler chin strap around his head to keep his mouth closed. When Allen told me about having to possibly wear a chin strap we both hysterically laughed. I mean is it possible to make my poor husband look anymore ridiculous in his sleep? We have lovingly dubbed him "Chinstrap Caldwell".



The FIRST night Allen had the cpap I was totally amazed, he didn't snore...or gasp one time. So he had the sleep study Monday night and his appointment to go over it Tuesday. The Pulmonologist told us Allen has SEVERE obstructive sleep apnea. He had 150+ apnea episodes and desatts down to 73%. Scary. During the sleep study they did try the chin strap on him because he kept opening his mouth in his sleep. The woke him up a little later to say the chinstrap was not working and Allen was STILL opening his mouth. Allen says "that chin strap just got in my way". I'm still calling him "Chinstrap Caldwell" though, it just has a nice ring to it.

Yesterday we took Makily to Sea World. It was a total blast and because our niece is an employee we got in free. All of Allen's family went and we really had a great time. The dolphin show seemed to be Makily's favorite this time. That and of course the "Oddysea" show. She laughed like a maniac through that one as always.

Still working on our fostering license. I have officially stopped holding my breath on that. Seems like we get EVERYTHING done and they come up with something else we need or some other piece of paper work they want. I just do whatever they tell me as quickly as I can (usually THE DAY they tell me) and hope that the next call will say we are licensed. This week we had to answer FIFTY more questions about our lives and childhood (50 for each of us by the way so really 100). The questions were all things we have answered before. To say it annoyed me to do it all over again for the 5th time is an understatement but give me a hoop, I'll jump through it. Then I had to send them our renewed car insurance cards, and get ANOTHER reference. THANKS DANA, I love you girl for doing that on such short notice.

I heard back about Makily's small bowel follow through.

It's normal.

*sigh*

I know I should be happy but really I am not. This poor kid has chronic constipation or diarrhea and retches at least 2-3 times a day. I was convinced that her intestines were not moving like they should. I was wrong. The test says they are fine.

HOW IS IT THAT HER INTESTINES MOVE NORMALLY BUT SHE IS EITHER CONSTIPATED OR HAS WATER DIARRHEA!?

I don't know.

We see gastro in two weeks and I am sure he will go over it then. The retching really just breaks my heart. She looks so scared and out of control. I can't do anything about it when it's happening except say "It's okay Makily, breathe baby, catch your breath". Usually it just makes me cry.

Gee what a lot of help I am.

Makily goes back to Pulmonology next month for a second sleep study for HER sleep apnea. They are going to try her on c-pap to see how she tolerates it. She hates things on her head or face so I am not sure how this is gonna work. She surprised me in the hospital in December when she wore the mask then so maybe she will do it now!?

I can't believe I am going to be living in a house with two "Masked Avenger's".

My Baby's Joy

Sorry I have been a blog slacker this week. I promise next week will be better.

***Please notice the new link under "friends and favorites" for Baby Reesie. She is three months old and recently diagnosed with Emanuel Syndrome. She is still in the NICU, please visit her site and offer her prayers and lots of love.

I don't have much to say tonight, I am in a rush. I made another new Makily video. I hope you enjoy it as much as I do.

Make an on-line slide show at www.OneTrueMedia.com

At a snail's pace

That is how quickly our foster licensing process is going.

*sigh*

The licensing specialist (LC) came and approved the fireplace door. We ended up taking a regular four slated fire screen, removing one slat and then we attached it to the front of the fireplace. It's hinged and everything. My husband is Mr. Handy Man.

She looked at the medication cabinet, the locked up gun and separate locked up ammo case. She went into the foster baby's room and dropped the bomb.

She says "Oh I forgot, you have to have a toddler bed".

*sigh*

Before anyone starts asking NO this was NEVER told to us beforehand. We started this process nine months ago and have had at least five home visits and just now we are being told we needed a toddler bed.

Why do we need a toddler bed when we are fostering 0-2 year olds you ask?

Well that is because the state will not allow us to put a 2 year old in a crib. Understandable BUT it would have been nice had someone mentioned this say four months ago?

We bought the bed today and the room is all set up with a crib and a toddler bed. We only plan on fostering ONE at a time. I am a smidge nervous that they may want to push more than one child on us knowing we have TWO beds in that room.

Here is what we are waiting on now.

Our LC gives our packet to her supervisor. She reviews EVERYTHING to make sure no one has missed or forgotten anything (how that is possible at this point I don't know). Once she approves it, our LC comes out to our house again for Allen and I to review the packet and sign off on it. (she will be making sure we have the toddler bed) Then it is sent to the State of Florida for review and THEN we are licensed.

How long all that will take....I have no idea.

Here is a little montage I did of the Foster Baby's room.

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

Baby's Got Wheels!

***FYI: updated Makily's CB page today with medical stuff. check it out, link is in the "link section to the right"****

Allen and I have LONGED to get Makily one of those cool power wheel cars that she can drive. She isnt able to actually "drive" anything at this point she we just never bought her one.

Another special needs mom had said they found a power wheels with a remote control for the parent. It was a big pricey for us so we just didnt really look into it.

I went looking on ebay and found one for $150 WITH SHIPPING!

YES WITH SHIPPING!

Here is a link to the guy that we bought it from.

REMOTE CONTROLLED RIDE IN CARS FOR TODDLERS

It's a small car but it is perfect for her and she loves it. I would recommend this for ANYONE with a toddler or a special needs toddler that is able to sit up independently.

Here's a video of Makily in her new Ferrari.

Make an on-line slide show at www.OneTrueMedia.com

Super Mom??

Mmmmm....not so much!

So this morning was a crazy one.

Makily has been sick for over a week now and is JUST NOW able to eat again. She was retching at one ounce and running fevers on and off. Yesterday I finally got her back up to full feeds. So today was her first day back to school since she got sick.

We spent a few days over the weekend in Orlando because Makily had a sleep study. I still hadnt totally unpacked and put everything in it's place yet.

HUGE MISTAKE.

This morning I get up and start getting her ready for school. Nothing was where it should be and some stuff was still in suitcases so I am running around like a mad woman looking for her right shoe or her brush. She had her bath last night so I just had to dress her and do her hair. She screamed like a MANIAC the entire time I did her hair.

I get her backpack re-packed with school stuff only. I go to pack her feeding pump and realize I have no opened case of formula in the house. So I have to find some scissors, open the HUGE box of formula to get the smaller box, then rip that open grab two cans of formula. I go put her in the car along with all her stuff when I realize....her Kidcart is in the house. Allen had taken it out when he packed the van.

ACK!

So I go get the Kidcart, take it apart put it in the van. I get in the van and realize while I have the pump and formula, I had not packed, set, or loaded it in it's case. So I start the car, pour the formula into the pump bag. I begin driving to the school with the window down while priming her feeding pump at the same time. As I am priming her pump while driving I think to myself

"Wow I am SUPER MAMMA, here I am priming a feeding pump while driving". I was so impressed with myself I ACTUALLY was thinking of buying myself a "Super Mom" shirt.

My head starts to swell as I revel in what an efficient multi-tasker I am....when suddenly I see something out of the corner of my eye. It's something black and is FLYING through the air away from the van.

I look in the rearview and realize in a panic what it was.

It was "My life".

Those that know me, know what my life is. My friend Justin sometimes mistakenly calls it my brain (which actually is an appropriate name for it). It's a "personal planner" with EVERYTHING in it. My credit cards, money, checks, appointment cards, phone numbers, Makily's id, my license. (see why I call it my life?) In my rush to leave the house I had put it on the hood of the van and forgot to get it off.

As I see it flying through the air I notice something else seperate and fly away from it.

My cell phone.
(my life has that little cell phone pocket in the front).

In a panic I pull over, turn around and go back to the area where I saw "my life" land. I am feverishly searching when low and behold there it was. THANK GOD I had zipped it closed so it was all intact. I thought for sure my cell phone was a lost cause but I looked a bit more and found it about 10 feet away.....flipped open and dead. I put it on the charger when I got in the car and SURE ENOUGH THE SUCKER WORKED!

So Makily was about 10 minutes late to school today. When they asked me why she was late to this morning for her tardy slip I just said "Ugh, the alarm didnt go off".

Super Mom, I am not.