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.

Another Adventure in Walmart

The weekend before Christmas we again made a trip to Walmart with the Teals (are you seeing a trend here, I swear we do other things than just go to Walmart).

We were going to a "Jam in your Jammies" concert with Mr. Richard and I was looking in the women's pj's section for cute jammies to wear. Trishtwo was helping me pick something out and looking at things herself. I noticed a young guy about 20ish walking around aimlessly with some sort of ladies black lingerie in his hands. We made eye contact a couple of times, he looked confused and desperate but I quickly looked away. I didn't want ANOTHER awkward moment in Walmart....especially NOT in the ladies panties section.

I see Trishtwo notice him and him looking at her confused. I had to giggle to myself.

Secretly I was hoping he would approach her. Yes I was still bitter about "Kool-Aid Teeth man."

He did.

He is standing next to her sighs and says "Gee, I wish I could find some boy shorts".

Trishtwo turns around. He looks at her and says "These are boy shorts right"?

I swear to you he was pointing to a girdle that looked just like this.



Then he said he was looking for a Christmas gift for someone and she had said she wanted some boy shorts.

It was all I could do not to bust out laughing. I felt for this guy though. I mean there he was, confused as he could be, trying to buy his wife what she wanted for Christmas and he was looking at girdles. I imagined this woman opening her gift and finding a girdle.

Can you imagine what a "Merry Christmas" that would have been?

Trishtwo immediately says "Oh no honey, that is a girdle...step away from the girdles, BAD idea".

Trishtwo shows him where the boy shorts are and he stands there staring at them looking even more confused. I am of course watching from a distance reveling in the fact that I am not experiencing the awkwardness she is.

Then he says to her "uhm, I am not sure what size she is, how do I know what to buy".

Then Trishtwo asks him about what size he thinks she is.

All he could say is that "Well, she's a big girl".

*sigh*

Trishtwo then looks at the black lingerie in his hands. It was a nice long silky type gown with a silky robe to match.

She told him he would be safest with that, black is flattering and it was a pretty robe. Told him to save the boy shorts for another time.

He thanked her and went on his way.

Trishtwo and I decided we are now even. I had the kool-aid stain boy, she had the girdle BOY.

Just for fun today I will leave you with this. It's a clip from "Ellen", she is HILARIOUS to me and this clip cracks me up EVERY TIME I watch it.

Does anyone know if this chair is FOR REAL though.

SERIOUSLY!?

ENJOY!

Sometimes you just wish you hadnt worn makeup that day!

A year or so ago I was at Walmart. We were there with the Teal's (our family best friends Trish and Justin). As usual the boys went off to look at electronics and they took Cameron with them. Trish and I took Makily and Aubrey (yes my best friend's name is Trish, we like to call her Trishtwo).

Aubrey was about one at the time and was in the Trishtwo's shopping cart. I was pushing Makily in her stroller. All of the sudden Trishtwo gives me this look of urgency and says "Oh My God, I HAVE TO GO TO THE BATHROOM AND NOW"! Trishtwo does NOT use public bathrooms unless she has NO OTHER choice. So you can imagine the desperation of the situation if she was actually willing to use the bathroom at WALMART! She asked if I would keep Aubrey so she could make better time to the bathroom.

I pointed and laughed at her and said "sure".

Little did I know that the last laugh would be on me.

Trishtwo darts off to the bathroom leaving me standing in the middle of ladies and men's clothes. I couldn't maneuver very well because I had a Aubrey Bobs in the cart and Makily in the stroller so I figured I would just stay put. I am googling at the girls when I suddenly feel someone looking at me. I knew it couldn't be Trishtwo because well it hadn't been long enough for her to be back. I look up and there is a swarm of men walking around the men's section together giving me the eye and grinning.

I am immediately uncomfortable and PRAYING Trishtwo hurries up so I can get out of there. I start trying to think of ways to get out of the situation:

"Okay Trish, you can't get away because you got these two babies....hmmmmm maybe I can try to maneuver them out of here.....no then one of them might try to help me......ugh.....Trish better HURRY UP AND PINCH IT OFF......okay I just won't make eye contact, yeah that's right NO EYE CONTACT!"

I pretend to be looking at this HIDEOUS shirt hanging on the closest rack to me. Hoping they won't disturb me since I am shopping right? I can see one of them coming closer out of the corner of my eye.

OH LORD, I am so stuck!

So it happens, the one guy comes up to me.

He was a tiny man, probably about five foot tall and about 100 lbs.

He wore a large cowboy hat and a western shirt. He also had on a HUGE SILVER BELT BUCKLE (that probably weighed more than him), skin tight khaki colored stretch jeans and a pair of boots.

He approaches me with a huge grin on his face and says:

HIM: "your babies?" (while pointing to Aubrey and Makily)

ME: "this one is mine and this is my God daughter"

HIM: "your babies?"

ME: "uhm.....this one is mine and this one is my God daughter"
****he is GRINNING the entire time mind you and I notice a red line across his front teeth that I assume was a cherry Kool-Aid stain****

HIM: "Not your babies"?

(at this point I realize he does NOT speak English and I am wanting to kill Trishtwo)

ME: (pointing)"This one mine, this one not mine"(said in a very cavemanish way)

HIM: "OH OK"

(then he awkwardly laughs and pulls out his cell phone, now I really want to die)

HIM: "Telephone?"

ME: "No I don't have a phone" (I realize everyone in the free world has a phone but I was under pressure here okay)

HIM: "Telephone"

ME: (pointing to my wedding ring) "No, No I am married"

HIM: (remember still the big huge Kool-Aid toothed grin)"Telephone number?"

**GOD HELP ME**
At this point I am praying that one of the girls will puke or do something horribly obnoxious so to scare this man away. Of course Makily had fallen asleep and Aubrey was cooing and giggling at this man as sweetly as she possibly could...the kid TOTALLY THREW ME UNDER THE BUS.

ME: "No no....married"

HIM: "you have phone...number"

(now I am wracking my brain for the word for husband...I took Spanish in high school)

ME: "Can't give you number I have....uhm...I have espouso" (while pointing to my ring)

HIM: "it's okay....it's okay....telephone number"

ME: "not okay......no no" (while awkwardly laughing)

HIM: "What you no like Mexicano?"

SOMEONE PLEASE SAVE ME NOW!

I just awkwardly laughed again and repeated "espouso..married".

Then he kept saying "your babies" again while pointing at the girls and I just gave up and said "yes....my babies!"

Just then out of the corner of my eye....I see Trishtwo walking my way.....

"I hurriedly say "ugh there is my sister...yeah my sister gotta go."

I push the cart with Aubrey in it while dragging the stroller with Makily towards Trish, I am running into things with the cart and Aubrey is laughing. Trish has a confused look on her face and all I can think is:

GET ME OUT OF HERE!

Tragic Story of a CRAZY LADY and a set of fireplace doors.

I will start this post off by reminding myself that in the grand scheme of things, THIS IS NOT really a big deal.

It's just INCREDIBLY frustrating.

Patience Lord...I know patience right!?

At our last home study we were told we had to have doors installed on our fireplace. I was a little miffed because we had three home studies before that one and no one had EVER mentioned this requirement. We would have had it done LONG ago had we known.

On January 9th, I went to Lowe's. I ordered and paid for a set of glass fireplace doors. The man asked me the measurements of our fireplace and then told me to pick out the ones I wanted. He didn't ask me any other questions about our fireplace and I didn't know anything else to tell as I have never done this before.


When I ordered the doors the man told me they would be in on Jan 23rd...maybe even sooner.

I got a call last weekend saying that they are on back order and OF COURSE no one can tell me how long. Mind you this was FOUR DAYS before they were supposed to arrive. I explained to them that this is the LAST thing standing in the way of our foster parent license and that I was VERY UPSET that I was not told they were on back order before then. They told me I would get a call on Monday to see what could be done (it was Saturday and the manufacturer is of COURSE closed).

Monday I received a call saying they were NOT on back order and would be here by Friday.

I was ecstatic.

Thursday I called to ensure everything was still in order for them to arrive Friday. I spoke with two people and after MUCH confusion was told that

THE DOORS WERE IN...A DAY EARLY TOO!

I decided that I did not want to wait for Allen to get home to pick them up. I had to go get them MYSELF. I couldn't be at ease until I had them in my house!

I picked them up and was incredibly pleased with myself. I called our licensing specialist and told her they would be installed this weekend. She was very pleased!

THANK THE LORD WE ARE DONE......

or so I thought.

*sigh*

This morning Allen opens the box. Starts reading the directions....sighs and then says"

HIM: We can't use these

ME: WHAT? WHY NOT!?

HIM: The instructions say "Do not use or install of prefabricated fireplaces. For use ONLY with masonry fireplaces".

ME: What is the difference and what the heck does that mean?

HIM: Masonry you have concrete that surrounds the fireplace, these attach to that concrete. We have a prefabricated fireplace and there is no concrete to attach this too.

**the top of my head flew off my body**

Allen and I then got into an ugly argument that I won't fully describe here. It was riddled with lots of colorful words. We weren't mad at each other......but hey who else were we going to scream at?

I called Lowe's, spoke with the manager and VERY FIRMLY explained our problem/s with them. He said he "thinks" they just "might" sell the pre-fab doors but for me not to quote him on it.

Gee that made me feel better.

Then he said that since it's Saturday the manufacturer is closed and so they can't find anything out for certain until Monday.

**Of course**

We have called around Ocala today to see if anyone has them, none of the places we have called has answered their phone. I googled "prefab fireplace doors" and have found a few of them but to the tune of over $500.

Lovely.

I also found THIS SITE
that says and I quote:

The Zero-Clearance Fireplace Glass Door Problem A very common problem with these fireplaces are dilapidated or missing Fireplace Glass Doors. Zero-clearance fireplaces manufacturers generally provide a glass door system with the fireplace. However, in an effort to keep the cost down the glass doors are generally not built to last... a long time. Soon the homeowner finds themselves searching for replacement fireplace glass doors, and this isn't always easy. The manufacturer of the fireplace may have gone out of business, or you aren't sure who installed the original fireplace, or you just simply don't know where to start.


I laughed uncontrollably I do think Allen believes I have lost my mind.

So we are going to be taking back the $230 doors that took two weeks to get to Lowe's and are trying to think of SOMETHING we can do to get a "door" on the fireplace. The cheapest I have found at the point are $500 and I am not even sure they are the correct size. Who knows how long it will take to get them to us.

We are kicking around other ideas, such as just buying a fireplace screen (the kind that would normally sit in front of the fireplace with the doors that open) and somehow mount that to the face of the fireplace. Don't know if this will work but we are willing to try.

I also have an email in to a guy that sells them on ebay to see if he has the size we need. Those are MUCH more reasonably priced but again, I don't know if he has what size we need.

My mom and best friend Trish keep saying "There is a reason behind this, maybe the baby you are supposed to have is not born yet or is not in the system so that is why there is the hold up, God knows what he is doing".

I agree and I pray they are right.

I have this horrible negative "evil troll" in my brain that keeps saying

"Maybe this is a sign that you aren't supposed to do this".

I keep telling the troll to shut the heck up.

Will keep you updated.

My family, we are a loud, obnoxious bunch.

Yes that's right, we are loud.

I remember many times growing up in our house my poor father screaming "stop all that racket, your hurting my ears"! He seriously has hearing loss too, I blame both my sisters, it had nothing to do with me...I am the good one....okay not so much.

In our defense when you grow up in a house with three girls, you gotta be loud to be heard!

I sometimes find that when I am talking about something I am happy, excited or passionate about I get loud and I almost NEVER realize it until someone points it out.

I think I am tone deaf maybe?

So here is the point of the whole "we are loud and obnoxious" entry.

When Makily was six months old and Shands had overdosed her on narcotics she was on the ventilator for three days. It was a NIGHTMARE getting the tube down, it took them several tries and her little mouth was very bloody. When they extubated her on day four, she sounded AWFUL and I would be lying if I said she didn't struggle a lot. The PICU doctors kept coming in saying she needed to be re-intubated and I begged on my knees (okay not quite but close) to just give her more time. I had this gut feeling, this I don't know "mother's instinct" that if they reintubated her she would end up with a trache....or unable to come off the vent altogether. There was a REALLY nice Chinese doctor that kept coming in and out of the room that day just watching Makily breathe. He would suction her, listen to her chest.....gently stroke her forehead and watch her some more. He said they did want to re-intubate her but he agreed with me and he was going to try and keep that from happening. He was in and out of the room all night and day. At one point he apologized for being in there so much and I said "Sir if you want to pull up a chair BE MY GUEST you are taking care of my baby". By the next morning Makily was out of the woods. God bless that little Chinese doctor, I do believe without him, she wouldn't have done so well.

So the following day the PICU doctors tell me Makily needs this invasive test to look down her throat and in her airway (bronchoscopy/laryngoscopy). I was perplexed. I am NOT a doctor but it made no sense to go poking around in her throat AGAIN when she had just been through all that trauma with her airway. I explained that to the PICU doctors and they said they would have Pulmonology and ENT come and talk to me about it. Both specialists came in, I stated my case on why I didnt think she needed the test RIGHT THEN. I said I would have it done eventually but I didnt feel it was wise to put ANYTHING down her airway right now as long as she was stable. The pulmonologist AGREED with me and the ENT never really said one way or the other.

My sister Deborah showed up a little later on and we were chatting about it when two Resident doctors came in wearing surgical scrubs. My sister looked at me like "what are they doing here"? I just shrugged. The female resident started:

Her: Mrs. Caldwell we are here to get you to sign the consent form to do the bronchoscopy/laryngoscopy on Makily. We are going to take her back now.

Me: WHAT!?!?!?!??!!?

HER: Didnt ENT and Pulmonology talk to you?

ME: YEAH AND I TOLD THEM NO WAY! (yes the loudness began....)

HER: Well she is on the schedule to have it done.

ME: That's nice but I told them BOTH I didnt want her to have it and they agreed.

HER: Well the ENT ordered it.

ME: What about the pulmonologist?

HER: Uhm, she thinks it can wait.......BUT she REALLY NEEDS THIS TEST!

ME: Well I am not comfortable with it.

HER: This is a LOW RISK test Mrs. Caldwell. She has a TINY risk or laryngospasms (which at the time could have been fatal to Makily or of course been a reason to put in a trache) but that is it.

ME: Why is it that it is SUCH an emergency to do this now? She spent a month in the NICU here and two weeks in the PICU three months ago and NO ONE has EVER suggested this test.....EVER! She does NOT have breathing issues unless she gets a cold or is sick.....OR UNLESS A RESIDENT OVERDOSES HER ON NARCOTICS!! (*the loudness was REALLY ugly at this point and I saw the nurse slide the door to our room closed)

HER: The ENT really feels this important to do because if she has certain airway problems she may need to be evaluated for a trache, she has PRS you know.

ME: A TRACHE!? No one has ever said that until now!

HER: This is why we need to do this test to make sure she does not need anything like that, it's possible we would find why she went into respiratory distress that way.

ME: I KNOW why she went into distress, from all the MORPHINE that was pumped into her! How about this, I will talk to her pediatrician who I KNOW AND TRUST. If she thinks it needs to be done now then we will go ahead with it....wait are you a resident doctor?

HER: Yes I am

ME: Uhm, well even if I agree to it being done YOU won't be doing it...THE pulmonologist or ENT will do it, I do not trust residents with my daughter.

HEr: I am TOTALLY capable of doing this test myself.

MY SISTER DEBORAH: (yes she chimed in and I don't think she could have held in being quiet for one second longer, my family TRIES desperately to respect that I am Makily's mom and will take care of things, but I could tell it was killing her!)
How many Partial Trisomy 11,22 children have you done this on?

HER: Oh I have done HUNDREDS.

DEBORAH: OH REALLY? That's odd because there are ONLY about 160 known cases so I find that hard to believe. (then she looked at me like "sorry I couldn't hold it in, I just smiled at her, this resident had NO CHANCE between Deborah and I :-)

HER: Uhm, well I mean....I meant I have done this on MANY children with difficult airways.

ME: Like I said I will talk to her pediatrician and if she agrees it needs to be done NOW, I will consent to having ONE OF THE DOCTORS do it and NOT a resident.

HER: Well if you do get the go ahead from the pediatrician we may not be able to do it right then.

ME: That's fine because like I stated before THIS IS A TEST THAT CAN WAIT!!!

HER: I will need you to sign something that says you will not consent to this test and it will be in her permanent chart.

ME: Bring it to me and I will sign it now.

She walked out in a huff while the male resident scurried behind her like he had no idea what to do.

They never brought me anything to sign. I can only imagine what she wrote in the chart about the LOUD MOUTH Mommy and Aunt in Makily's room.

I guess being loud can be a good thing sometimes.

Things not to say to a special needs parent.

I have found that since having Makily some people have said some pretty dumb things to me. I find myself calling my mom to vent about it when she gently will say "Patricia, they don't live the life we live and they don't have Makily, is that something you would have said before you had Makily?" Most of the time my answer is "no I just wouldn't have said anything at all". I don't know which is worse...inquiring the wrong way or running away like your hair is on fire.


Things NOT to say to a special needs parent and child


*NEVER, EVER, EVER use the word "retard", no matter what. Whether you are using it as medical term or to describe something you think is stupid, it hurts just the same. Most likely the parent won't correct you but know that inside they are crying. If they aren't crying inside most likely they are in visioning themselves slapping you silly. :-)

*Do not say "What is wrong with him/her?" That will put the parent on the defensive and they will not want to continue the conversation. Nothing is "wrong" with Makily, God just made her special.

*Don't say "Oh he/she will grow up and be "normal" right?" If the child has a condition that is not something that they will grow out of, this is HARD for a parent to explain and even harder for them to be reminded of it.

*Don't stare and if you accidentally find yourself staring..and the parent/child catches you smile WARMLY AND SINCERELY. Do not give the "poor baby...poor you" look.

*If you find your child asking questions loudly about the special needs child in the room (say the doctors office or at school) don't just make up an answer. Chances are the SN child's parent has heard your child's questions. It is best to come up and VERY KINDLY say "My son Jon is interested in your child, can you tell us about him". Let the SN parent lead the conversation. They have probably done it before. Make sure to reinforce that it's okay to be different and that this child is a special one.

*If you are approaching a parent just because you are nosy...don't bother.

*If the parent gives short, sweet and quick answers...take a hint and end the conversation. Sometimes it's too much to go into the child's problems and likely they have done it more times than they can count. Some days, you just want to be "normal".

*Try not to say things in front of the child you wouldn't say in front of your own child. You would be surprised how much special needs kids understand.

*Don't start asking "can he walk, can he talk, can he crawl, is he potty trained?" It's just uncomfortable for the parent if the child is not doing those things and yet another reminder.


Good ways to approach a SN child and their parent


*Talk to the child directly. If they can't talk the parent will answer you. Treat the child like you would any child their age.

*Compliment them on their eyes, hair, smile, outfit ANYTHING. That always starts things off right.

*If you are inquiring because there is someone close to you that has a disability somewhat like that child's, make sure to mention that. It puts the parent at ease and fast. Usually they will be much more forthcoming with information too.

*If you MUST ask "what is wrong" with the child say "So does he/she have a diagnosis"? I was asked this way before and for some reason it was MUCH nicer than "what's wrong with her". Do not start the conversation off with this statement though, use the compliments first. :-)

Dear Foster Baby...

I think of you often now that we are so close to having you here (at least I think we are close!). I have gone clothes shopping for you twice. I feel a rush of excitement and fear when looking at things to buy for you.

I know you will be afraid when we meet.

Most likely you will have been torn from the only family and home you have ever known. Everything will be different for you strange people, strange house, strange smells. I can't imagine how scary that will be for you. I pray I will know the right way to hold you, rock you and comfort you so you will feel safe and comfortable in my arms.

Knowing the reasons why you will need to come and stay with me brings sadness to my heart. I would be lying if I said I didn't want you to stay forever. That is the fear I speak of when I buy things for you. The fear in wondering how long you will be with us. Wanting to fall in love with you and fearing the heartbreak of when you may leave me. My faith in God comforts me and I am reminded that no matter what happens you were meant to come into our lives and us into yours. It was all in God's plan long ago. Only he knows the outcome. While I do have fear and anxiety about all these things, I have a peace with that too, knowing that God has led our family to you.

When I purchased the outfits today it struck me that if you leave I will send you with EVERYTHING we got for you while you were with us. At least a small piece of us will go with you. My hope is that someway, somehow we have made your life better and that you know what it is to be loved. I pray that your forever family whoever that may end up being will do whatever it takes to make sure you feel safe and loved.

I pray you will know no matter what that someone loved you unconditionally and that you were VERY wanted.

If you do get to stay with us I pray that you realize it was your destiny to be in our family. Just like it was Makily's destiny to be our daughter. I pray that we are able to show you how wanted and loved you are. I pray I can show you that being different is okay and that we are all special.

Most of all I pray that you are happy, loved and given all the opportunities in this world that you deserve.

Love
Your soon to be Foster Mommy :-)

Shopping in yellow.

Today I went out and shopped for the "foster baby".

I haven't really allowed myself to do much shopping in that department. Mostly because we don't know if we will be getting a boy or a girl...or even how old the baby will be (all we know is under age two).


It was kind of strange shopping for unisex clothes. One reason is that I think it is almost a sin to put a baby girl in anything but pink. Putting a boy in pink well THAT IS A SIN. So shopping for something that a boy or girl could wear was tough. I got lots of yellow. I almost bought purple when I realized Allen has told me SEVERAL times that purple is GIRLY. Okay so sue me for not realizing this on my own.

I felt the "guilt monster" creeping in. I didn't buy anything for Makily and felt horrible for it. I did look for something for her but didn't find anything.

The guilty feelings have been popping in and out since our home study on Friday morning. I keep wondering if I am being fair to Makily. Am I taking away from her? Then I see her playing with my God Children and I realize that we are giving her something too.

The licensing specialist GRILLED me hard on all things surrounding Makily. This was the first time they really focused on that. I knew it was coming but it didnt make it any easier on me. I am proud I got through it without crying though. I got a little choked up when she asked me how Allen helped me through the first six months of Makily's life and the PPD I suffered. Telling her how amazing he was really got me. He really was a rock. I don't know how he did it.

She also asked questions about my being on Effexor for depression. I told her that I am VERY mentally stable (ha ha) and that I do not feel "depressed" 99% of the time. I explained that Allen and I have had almost four years to deal with the Makily's diagnosis and that to us our life is "normal" now. Yes sometimes I get sad for the things Makily won't be able to do but that I feel is normal. Looking back I have come SO FAR since she was first diagnosed. It was just so much to take at once and it was such a DARK, DARK period in my life.

She wanted to know how Makily can be healthy if she has chronic medical conditions. I told her that all of her medical problems have been treated with surgical intervention or are controlled by medications. That she is the healthiest she has ever been in her life. I told her there was NO WAY I would EVER have thought of fostering a year and a half ago. Her health was not as stable and she still needed to have the holes in her heart repaired.

I finally point blank asked her if our having a special needs child was going to hurt our chances to foster. She said no. Then she explained the process from here on out. She types up a nice pretty packet of information on our family from all the paperwork we have filled out and all the interviews we have had with them. It is sent to the State of Florida and they review the material in our packet. If they question ANYTHING it is sent BACK to the licensing specialist and she has to come back to us to get the information. So she said that is why she covered so much about Makily because she did feel that when our packet is reviewed they will ask questions about how we are handling things with her. Once they review it and approve it, the State of Florida sends out ANOTHER licensing specialist to do the LAST HOME STUDY and as long as that person approves us....well then we will be licensed.

We really are close.

It's starting to feel real.

So your baby was just diagnosed with Emanuel Syndrome......

....what do you do now?

First of all go to Chromosome 22 Central and contact Stephanie St.Pierre. Stephanie is the EXPERT on Emanuel Syndrome and many other chromosome 22 disorders. Her email address is on the site. The website has so much information and can direct you to other families and their stories online.

DISCLAIMER: I AM NOT A DOCTOR. I have some medical training but....

I am NOT A DOCTOR OR A NURSE.

The advice and information I am giving here is strictly based on what I have learned from being Makily's mommy. I will outline what we have experienced with her. Your child may not have the same issues we have had, although all of her severe medical conditions ARE IN FACT a result of having Emanuel Syndrome. While all the children have similar issues just like ANYONE ELSE they are ALL different in their own ways.

I encourage you to follow your doctor's advice for what is best for your child.



Emotionally

The emotional toll of hearing your child has Emanuel Syndrome is devastating. You will go through the stages of grief, many times. I pretty much skipped over the "denial" stage and went straight to anger and depression. Makily is almost four and I pretty much have accepted things....although I do slip back and forth at times. For me that first year of her life was the hardest. It's not a time in my life or Makily's that I would wish to repeat.

You may find yourself feeling and thinking things that scare or confuse you. I did this and after speaking with many other ES parents, they went through it too. Allow yourself to feel whatever you are feeling. Pushing it to the back of your mind will just make it worse and eventually it's all going to come out. I also suffered SEVERE PPD which was worsened by Makily's diagnosis AND all her many medical problems. According to WEDMD you are at higher risk for post partum depression if:

You have a lot of other stress in your life.

You have a sick or colicky baby.

Babies with Emanuel Syndrome typically are born sick AND many have gastrointestinal problems that often present much like colic. The combination of that and the diagnosis of Emanuel Syndrome can be a HUGE source of stress. To find out more about Post Partum Depression click here

My advice to Mom's if you think you may be suffering from PPD is to GET HELP AS SOON AS POSSIBLE! I fought it myself until Makily was eight weeks old. I was pumping my breast milk for her at the time and REFUSED to take any medication. It wasn't until I had a nervous breakdown that I decided I had to do something. I began taking medication and while it did not take all my problems away IT SAVED MY LIFE. Things were still hard but I was able to deal with my life better. I started to feel like a part of me was coming back again. I no longer felt like there was no light at the end of the tunnel.

Who are all these doctors?

Most Emanuel Syndrome babies have MANY medical issues that need to be addressed. You may find that you spend more times traveling to and from the doctor's office than you ever have in your life. The waiting room will become your second home. Makily came home from the NICU when she was a month old and we didn't truly know the extent of all of her medical problems until she was at least one. It IS CRUCIAL to have a pediatrician that is willing to research Emanuel Syndrome (ES) and learn all about it. Due to it's rarity 95% of the medical profession DOES NOT know anything about it. I have often times found myself educating the doctors of what Emanuel Syndrome is. It's just not something they see often and most likely they will never see it again.

Your baby is very rare and very special!

There are MANY body systems that can be affected by Emanuel Syndrome. For a complete list of possible problems CLICK HERE

My advice to ALL Emanuel Syndrome parents whether your baby is having symptoms or not is have both a Neurological and Cardiac consultation (along with whatever else your doctor has advised). Obviously the brain and heart are vital to one's survival and if their are any abnormalities with either, you should know about them early on.

Makily was born with what we thought was possibly just a tiny ASD. After two cardiologists, many EKG's and several echocardiograms it was determined she had two ASD's that needed to be repaired. She had a heart catheterization at age three. During the cath they found she didn't have just two ASD's...she had several (ya know like a piece of swiss cheese). Thankfully this was able to be repaired during the heart cath (click here to see video). My point to all that is that even though your child may not be showing any symptoms, something could be going on. It's best in my opinion to rule it out.

Makily did not show any signs of seizures or neurological problems (well other than developmental delay that goes along with ES). She was two years old before we had a neurological work up. She had other pressing problems and the neuro appt kept being pushed to the back burner. At the appt she had an EEG that came out fine. I was even proud when they told me that her EEG was "normal for a child of her age" and that her brain waves were not considered "slow". They scheduled a 48 hour EEG and an MRI for the following month just to be on the safe side. We were told it was just a precautionary measure and she seemed fine. Less than two days later Makily had her first (and so far only) massive seizure on my living room floor (click here to read about it). It was 3:15 am and I felt like the wind had been knocked out of me. She ended up in the PICU on a ventilator for three days. When we arrived at the hospital they preformed an MRI of her brain. It revealed a thin corpus collasum, mild hydrocephalus and mild cerebral atrophy (all of which are typical in ES kids). I was told that the combination of these three brain abnormalities put her at higher risk for seizure activity. They are still unable to tell me why she never had seized before that day and what caused the seizure to happen that day. She has been on medication for her seizures since June of 2006. Since starting the medication she has not had any seizures and her EEG's have all come back normal.

There are other organ systems that can be affected by Emanuel Syndrome I HIGHLY ENCOURAGE you to have whatever consultations your child's doctor advises.

PT, OT, SLP

WHAT THE HECK DOES ALL THAT MEAN!?

Physical therapy, occupational therapy and speech therapy.

Your child will likely need all three. Makily recieved therapy three days a week for the first 3 years of her life. That on top of all the doctors appointments had me running like a crazy woman (and I was/am a crazy woman). Most states offer Early Intervention (which your child SHOULD qualify for). It is a program for children with special needs and they pay for your child to receive therapy. Even if you have private insurance, typically they only cover a certain amount of therapy a year (ours is $2500). Once that is used up you would be left holding the bag for the remainder...that is where Early Intervention comes in. They will pick up where your insurance leaves off. If your child is getting three hours of therapy a week at $100 a pop that adds up to a total of $1200 a month which is VERY expensive. So I urge you to get in touch with your local Department of Children and Families and they should be able to direct you to Early Intervention in your area. I also urge you to get Medicaid for your child if you can. We applied and were turned down because we are only a family of three and our income was too high. Medicaid pays for SO MANY THINGS that your insurance will fight you tooth and nail on. I also encourage you to try and get Social Security for your child. We have applied once and were turned down (due to income) but I am going to apply again. For a while we did not want to apply for any help because our pride was getting in the way. Once we realized that we were only hurting ourselves and that state aid was MADE FOR CHILDREN with disabilities like Makily (although it's often used and given to others who need to go out and GET A JOB, don't get me started on that).

Things we have used that have helped Makily along the way.

The Bumbo Seat
**This helped Makily TREMENDOUSLY with her upper body strength and learning to sit up on her own.**

Ankle Foot Orthotics (AFO's)
These helped Makily to be able to weight bear on her feet. Her ankles are very weak and like to collapse without them.

Jumperoo
Makily would just kinda "hang out" in this at first but once she got the hang of it she REALLY enjoyed jumping in it. I hated it when she got too big to use it!

Squeaky Shoes!
These are the cutest shoes ever. They squeak when your child kicks their feet together, steps or pushes down with their feet. It's a great way to get them to want to stomp and use their legs. You can find them on ebay. Just search for "squeeky shoes".

The Neurosuit
This is a high tech suit that compresses the joints and different pressure points throughout the body. Makily was lucky enough to have one purchased for her from an amazing organization. They are pricey but it was less than six months of using it that Makily was taking steps with the Kaye walker and standing up.

Developmental Milestones for Makily
(keep in mind that Makily spent a total of three months in the hospital for the first year and a half of her life. She had four major surgeries during this time also.)

* Little smiles at four months.
(some parents have reported that it seemed their baby was "smiling with their eyes" before they got an all out grin, this is how it was with Makily)

*Cooing at four months and giggled

*Cooing and "talking back" in response to you five or six months

*Big grins and belly laughs at six months

*Sat by herself in a bumbo seat at 9 months

*Tripod sat at 16 months for a minute or two at a time.

* First tooth 18 months

*Sat independently for short periods at 19-20 months.

*Sitting independently indefinitly 24 months.

**Had her first modeling job 26 months
(okay I get it's not developmental but HEY can't a mamma brag!)

*Weight bearing on her feet WITH knee immobilizers, AFO's, Neurosuit and therapy ball in front of her at two and a half (30 months).

*Weight bearing with just AFO's and therapy ball 32 months

*Weight bearing with NO therapy ball, only holding your hands age three.

*Taking steps with help and with Kaye walker 38 months (age three and two months)

**as of 1-11-2008 this is a rough draft of this post. I will be adding to it in the coming weeks.**