Delaney Elizabeth.

This is my neice Delaney.

Is she adorable or what?

She is my sister Deborah cloned.

It's very strange how much she looks just like her mommy did at that age.

The same big blue eyes and gorgeous curly brown hair.

I love it.

Delaney mistakenly thinks she is Makily. She will look at herself in the mirror and point while yelling "KILY....KILY!!!!" It's incredibly cute and very sweet.

Last week my sister took her to see Dr. Pierre for her two year well check. She had blood drawn for other reasons and they found that her white blood cell count is low. Some other levels are low also.

If Delaney were sick it would not be anything to worry about.

Delaney is not sick though.

She hasnt had any type of "bug" for at least a month or more. So there is no good reason why her white cell count should be what it is.

Dr. Pierre is repeating the blood work on Thursday and we are hoping to get the results back that day. If not they will be back in Friday probably. If they come back abnormal again I assume she will be referred to a hematologist to figure out what is going on. We are a little nervous as if you google "low white blood cell count" scary things come up.

I refuse to believe that lightning would strike our family twice.

Our hearts would be broken if anything were to be wrong with sweet Delaney. We are a strong family though and can get through ANYTHING together.

Please visit my sister's blog at

SWING SHIFT

for more details and to offer words of encouragement and prayers.






I love you Delaney.

Did the phone just ring and where are the ear plugs?!

Okay seriously I have done NOTHING but jump every time the phone has rang.

Are we ever going to get a placement!?

ACK!

Okay granted we haven't even been licensed for a week but I am impatient.




Had Makily's IEP (meeting to evaluate her progress and make goals for next year) today, I did it over the phone because I am a dingbat and could have sworn it was for tomorrow. It was like I was there, I was on speaker phone during the whole thing so it worked out.

It went well but I would be lying if I said that there weren't several instances that made my eyes well up with HUGE tears. :-( Part of me wanted to find ear plugs or mute the phone during certain parts.

One of the questions asked was what I was most concerned about when it came to Makily.

Gee that's a loaded question (and I did say that).

There are so many things I worry about for her and that I am concerned about, the thought of it brought a lump to my throat.

I told them I WANT her to walk. I stopped there but there was a huge part of me that wanted to SCREAM to them how much I want that for Makily.....and okay...for me too. I wanted to say that I want to see her dancing and jumping on her feet playing, hell I would settle for just seeing her walk slowly and unsteadily to me. That is my dream. God I hope it comes true one day. They talked about how Makily likes to watch the other kids play and to be with the other children. This really made me smile because she has come so far in that respect. Then the next sentence they read totally made me bawl (I put my hand over the phone).

"Due to Makily's disability she is unable to initiate meaningful play with another child".

It makes me cry just typing that.

I know it's true, Makily's body and mind don't work that way.

Even still it PAINS me that she can't sit down with a friend and color, or share toys or play a game.

This breaks my heart in ways I can't begin to describe.

The rest of the meeting I bit my lip and wished to God I had Makily with me at that moment. I wanted so bad to hold her and know that even though she can't do those things she is STILL MY BABY and the most amazing child on the planet to me and lots of other people too.

My heart just aches for her to experience all the fun things about being a child.

Simple things.
Like the way grass feels on your feet, coloring a picture, jumping on a trampoline, climbing a tree, dancing with a friend, sliding down a slide, feeling weightless in the ocean and the sand under her feet.

So while her IEP went well and Makily is getting all the services I wanted for her (plus HOPEFULLY some much needed equipment for in home) I am sad.

**To anyone from Makily's school that reads this, please do not feel bad in any way. I know you are all working hard with her and love her just like we do. This is just the all too painful reality of what it's like to be on the parenting end, it's hard (Tangie, I know you know that).**

I will be promptly picking myself up and dusting myself off tomorrow.

So I am slowly

........recovering from the plague...okay so it's just strep throat.

I have felt like death the last week and I am so glad to finally be feeling somewhat better. I couldn't hold or touch Makily all day Friday or Saturday and UGH it killed me. She kept looking at me like "come get me" and I couldn't. We have snuggled most of today though so that's good. We are watching her closely for any signs that she is getting strep but so far so good. I am SO THANKFUL she has not gotten it. It was miserable for me so I can't imagine what it would be like for Makily. Please pray she does not get it over the next few days.

I finally got the birthday video done!

Photo and video editing at www.OneTrueMedia.com

ENJOY!

I will blog more tomorrow, I'm off to eat some more flavor ice. That's stuff addicting.

Strep Throat!??!

So early in the week I wasn't feeling well.

Had some cold-like symptoms.

I really just thought it was a virus.

As this week has worn on I started feeling worse. My throat was getting more and more sore. Swallowing feels like I have glass in my throat. I found myself considering just spitting and wearing one of Makily's bibs all day to avoid swallowing. (just kidding, okay not really)


I finally broke down today and went to the walk in clinic.

I have strep throat!

GREAT!

First of all what are the chances that I have strep throat and Makily does not? How the heck is that possible? She is snotty but has been for a while now and is not running a fever so I am confused. Allen will obviously be taking care of her all weekend while I become a hand washing freak.

Secondly can you believe the irony that WE HAVE WAITED over a year to get our foster license and I HAVE STREP THROAT the same week our license is approved?!

Do we have great timing and impeccable luck or what!?

Anyway I am on antibiotics and will be contagious for the next 48 hours.

Lovely.

I'm off to eat some flavor ice.

Will be back after lots of Nyquil and antibiotics.

IT'S OFFICIAL!!!!!

As of today April 23, 2008 at 1:45 pm Allen, Makily and I are officially approved and we are a:

LICENSED FOSTER FAMILY TO NEWBORN BABIES AGE 0-1!!!

It only took One Year and FOUR days.

We were told that we could expect a placement call as early as TOMORROW!

I AM SO EXCITED!

Our Bee.

As a birthday gift Jennifer sent Makily a really cute outfit she made.

It has special meaning.

Jennifer's son Jackson has Emanuel Syndrome and just recently turned one.



(click here to see her blog)

The first video Jennifer saw of Makily was this one:



Jennifer and I have spoken on several occasions and she has told me that this video gave her so much hope in the beginning when things were so sad and uncertain. There is such a cloud of darkness that looms over you when your child is first diagnosed with a severe medical and developmental disorder. I remember feeling like I was thrown into another strange reality and how incredibly desperate I was to find someone else that shared my same reality. I remember many a night I would type out LONG, depressing emails to Stephanie (Maia's Mommy). At the time it felt like she was the only person on the planet that had felt/was feeling the same way I did. I am so thankful for all the other Emanuel Syndrome families that have helped me through the last four years.

Jennifer has also told me that watching Makily and reading my blog has helped her so much. What she doesn't realize is that her reading my blog and being comforted by my child's determination HELPS ME IN WAYS I COULD NEVER DESCRIBE. Knowing that because of Makily there are people that read this blog and feel some sort of comfort in knowing that I TOO share their reality. That life is DAMN HARD but even when it feels like the world has crumbled around you and no matter how DARK and long the tunnel seems, that there is a light. Life goes on and it's best to try and focus on the positive rather than to dwell on the negative. Knowing that our struggles are helping other people encourages me in ways I will never be able to express.

Thanks Again Jennifer. Makily looks adorable in her outfit and she wore it proudly.

Seriously how cute is this?



Modeling.....such work!


Cutie Patootie

This one cracks me up!



Full Version of "Animal School" Video. This is a good one for EVERYONE to see, especially teachers. This is why Makily is our "Little Bee".

***By the way I fully realize I owe you guys a birthday party video and some other updates but this week has been killer and it's only Tuesday night. I think I am coming down with a cold too as all my joints are KILLING me and I am nasally. I am 30 and today I feel about 55. Hopefully I will get it together by the end of the week***

Party, Party!

Makily and Delaney's birthday party was a BLAST!

The kids all had a wonderful time and the adults had a great time acting like kids! LOL

Makily got TONS of awesome presents. She really made out well this year as always. We had a slip n slide with skim board and well let's just say it was interesting.

I have so much more to blog about and tons of pictures to share but SO MUCH I have to get done today so I will leave you with this sneak peak of pictures from the party. I tried to get the slide show done last night BUT my computer is not cooperating. After FOUR YEARS of putting pictures of Makily on here it's protesting. I have no memory left (the computer people!). I have one flash drive but have to get another to start transferring pictures to. Hopefully I will be back later on today with another entry and TONS more pictures.

By the way: We should have our foster license really ANY MINUTE now. How exciting is that? What's even more exciting is that my friend Sarah is on her second placement. She had a little boy overnight and he ended up going to a family member. The next day she got a one month old little girl. What a beauty she is. It's SO cool to see that once you get a license, you don't seem to have to wait very long for a placement.


SNEAK PEAK PICTURES!

Aubrey (my God Daughter) and Makily



Delaney Elizabeth (my niece/Makily's cousin)



Funny Girl


Swingin and HAPPY!

It's Friday....already!?!?

Knew this would be a busy week but PHEW!

It's FLOWN by.

Okay first off Makily's gastro appt went well. Since April of 2007 she has gained a whopping:


EIGHT YES 8 POUNDS!

They were thrilled with this!

She is in the 10th percentile for her weight (32.5 lbs) and she is not quite on the charts for her height (36.5 inches, she's a little shorty!).

We went over the upper GI and her small bowel follow through.

The upper GI DID in fact state "mild reflux noted past the esophagus suggesting a slipped Nissen". The doctor and I discussed this in length. He said that since it's mild that at this point we will just monitor her. I told him she recently did vomit about 5 cc's of triaminic when she was sick. Other than that though she has not been able to get anything else up. He said as long as she is not vomiting often, spitting up large amounts or having a chronic cough that it is okay. He said the increase in retching most likely IS in fact due to the mild reflux that is surpassing the Nissen. Makily does not take much by mouth and so her gag reflex is super sensitive. He feels like the reflux triggers her to gag and then she starts retching.

He said that the small bowel follow through showed that her small intestines moves things QUICKLY. That would explain the diarrhea but not the constipation issue we have more often. He says that most likely since most of the water is absorbed in the small intestine that once it hits the large intestine things LAG and slow down tremendously and since it sits there a while it hardens.

I asked him his thoughts on the puree's through the G tube. He asked why I wanted to do it and I told him that we had tried Miralax last year and that we didn't really find a happy medium. I told him that I wanted my child to be able to poop. His concern with the puree's is that Makily has such a sensitive GI system. She was on ALIMENTUM for two and a half years (a year and a half longer than recommended but she couldn't tolerate anything else). That when we switched her to Nutren the weaning process took almost six months to do and he is afraid if we switch to puree's she will have a hard time adjusting. He wants us to try the Miralax again in a different dosage schedule. He says if it does not work this time that when we go back in four months he is willing to assist us in trying purees through the G tube. I am willing to compromise and so that is the plan for now. The nutritionist came in and we discussed Makily's caloric intake. She said we could increase her a smidge right now but that since she is doing well and gaining weight we will keep her at the amount she is at. It's quite a balancing act as far as calories, volume, retching and weight gain with Makily.

All in all it went well and we will be going back in four months for a follow up.

Yesterday Makily's class had another Field Trip to the Villages. She zonked out on the bus right over there, I woke her up a little later though. Yet again it was an amazing time and the all the kids just choke me up so much. I just want to hug them all. Makily and I rode the golf carts twice and she giggled on every bump. It was INCREDIBLY cute. Then all the little boys in her class flirted with her like crazy. I have tons of pictures (see montage below). Makily enjoyed every moment of it and flirted right back. What a popular little girl she is!

There has been LOTS of drama surrounding our foster licensing but all of the revisions requested were completed and sent to the zone yesterday morning! It really won't be long now. My friend Sarah that was literally one week ahead of me in the process got her FIRST PLACEMENT yesterday. HE IS ADORABLE. I am so thrilled for Sarah as they had many of the same "glitches" in the process as we have had. What's really exciting is that they were officially licensed on Mon or Tues and got their first placement yesterday! THAT WAS QUICK HUH!?
+
We are gearing up for Makily and Delaney's birthday party tomorrow. We have all kinds of pools and water slides for the kids. It should really be so much fun and I can't wait to see what a great time the kids having playing. I can't believe my baby girl is four. WOW. Expect lots of pics and video from the party!

Enjoy the montage from yesterday's Field Trip.

Make photo slide shows at www.OneTrueMedia.com

La La La LAME and I am a Weinee.

Update on our home study review:

First off I CAN'T GET OVER HOW QUICKLY THINGS ARE MOVING NOW!

Our home study got to Orlando on Wednesday afternoon.

It was reviewed and revisions requested in record time:

THREE DAYS!

They had a few questions of course involving my sanity (or lack thereof ;-)! LOLOL No really there was a discrepancy of whether or not I was on meds. The form the doctor filled out didn't specify but the home study did so I could understand the confusion there. I really thought it would take an act of congress to get the letter from the doctor that clarified things. I called the office manager Peggy and she took care of it IMMEDIATELY. THANK YOU SO MUCH! I seriously figured that would totally hold things up but it was the first thing that was completed!

There were also some simple things about how we will juggle caring for Makily and a new baby. They also asked how we will include Makily when doing "normal" activities with a "normal" child.
It's when we get questions of that nature I realize how NOT NORMAL my life is. To us feeding Makily is "normal". So she has a tube and is hooked up to a pump. Takes us all of five minutes to take care of...so not a big deal AT ALL. I don't even think twice about it. Same thing with the apnea monitor and all her meds and therapies and crap. It's just normal to me and while it's different than the care you would give a typical child I really don't think it takes that much more time or effort to do on our part. We've been doing this four years now....Allen and I are pro's!

As far as including Makily in normal activities I had to laugh at that question. Part of me really wanted to say "well we will leave her out by the road to fend for herself while we go frolic together". Makily is MORE than included in EVERYTHING we do. I mean this kid has been to all the Disney parks at age FOUR more times than I can count. She has traveled more in her FOUR years than I have in my life, she's been to the mountains...THE CHILD'S BEEN OUT OF THE COUNTRY FOR GOD'S SAKE! We have NEVER left her with anyone to go and do something that she can't do, (unless it's date night for Allen and I and so then she stays with Granny) we find a way for her to participate.

Here's the "La La La Lame" part:

One of our back ups is Justin. They said his name came up with "calls for service". I didn't know what that meant and they explained that it was calls to the police or 911. The first two were because there were a couple of punk kids that live near him that were stealing materials from a house being built next door. They would steal the stuff and were using it to build a skateboard ramp. Justin called the police about it and so they want him to right a brief explanation of that. They have the report and can read it so I am not sure why the heck they are wanting him to write a statement about it. The third call says something about "a five year old cousin accidentally calling 911". This one Justin has NO IDEA what they are talking about so I am going to have to get more details from them.

I WANT TO THANK MY BACKUPS FOR ALL THE INSANITY THEY HAVE BEEN PUT THROUGH:

MY MOM


MY DAD


JUSTIN AND TRISHTWO.


Seriously with each forgotten form they just QUICKLY got it all together if not immediately, within 24 hours and have done nothing but try to help speed this process along. THANK YOU GUYS, WE LOVE YOU SO MUCH! Everyone else that plans on becoming backups I am calling today sometime to find out where/when/how to get your fingerprints done. I have been told three different ways and so I need to call and verify before I send y'all on a wild goose chase.

Here is the part where I am a wienee.

I cancelled and rescheduled my appointment to see the gyno. I just did not want to go. I know I suck and I realllllly need to go but I could not psych myself up enough to go. I mean seriously does anyone enjoy seeing the crotch doctor? I think not. I can't believe I am discussing this on my blog.....I have finally crossed the line haven't I?

I have to go pick Makily up between 10-11 so I can take her to gastro today. I hate the drive to Orlando. *sigh*

Tomorrow Makily has a field trip to The Villages again. I was told I wasn't allowed to go this time. Surprisingly I said Makily could go anyway. It was such an amazing thing last time that I couldn't imagine not letting her go. I just got a call though saying they ARE allowing me to go so I am STOKED!

Promise to take LOTS of pictures!

Busy Week.

Random.

Tuesday after I drop Makily off at school I have a doctors appointment for myself. I am probably getting my tubes tied and will be discussing that with the doctor. I have lots of mixed feelings about it that I just don't feel like going into right now so I won't! ;-). I'll save it for another entry....maybe.

Wednesday Makily has her gastro appt. FINALLY. We have had to reschedule it several times. We still have gagging and retching and constipation. I have a feeling he is going to say it's all "normal" for her but I am hoping there is something we can try. Dr. Pierre suggested possibly switching from her Reglan to Erythromycin but I am not that eager to put her on an antibiotic long term for gastric motility purposes. I know it works for some kids, but with Makily I don't like to use antibiotics unless we have to. They cause a whole host of other problems for her that we like to avoid. I also plan on discussing the "puree" diet with him too.

Then Saturday is Makily's birthday party! WHOOOO HOOOOO! We are doing Delaney's (my niece/Makily's cousin) and Makily's party on the same day since their birthday's are both in April.

This is the cake my sister and I picked:

HOW CUTE IS THAT!?

Of course I will be anticipating a call the next several weeks from the foster agency. I am really excited about that ;-). I know that there are several babies they have at this moment that need a place to go. It's very strange not knowing if when I wake up if I will have a baby at the end of the day. Weird, very weird.

I need to cut and dye my hair, I also want my eyebrows done but I can never do it just right. When I go get them waxed they just look "cleaned up" and not shaped and pretty. That annoys me.


Saturday we went to the Shriner's Carnival. It was fun. Makily rode a few rides but didn't really seem to care one way or the other. She did enjoy all the loud music and watching Cameron and Aubrey dance around. She kept laughing and "dancing" with them. It was incredibly cute.


**Due to Tara complaining I am adding pictures!**

Uhm, really Mommy, please stop kissing me!


Yes I am cute


We're going to a carnival?


Makily being adorable....Allen...being weird, I am not sure what he is doing here!?


Why Mommy......Just Why?


Yes there were two of them.

Prayers and stuff for other kids.

****Anything bolded in this entry is clickable and will take you to a link to visit that child's page.****

I have been meaning to do this for a few weeks but I just ha vent so I am doing it today.

PLEASE continue to pray for little Reesie. She is still in the hospital and is recovering from her open heart surgery. Pray that her heart and lungs will continue to grow stronger and that they will be able to extubate her very soon.

I have also been following little Reagan. I met her mom through another special needs parenting site. Reagan is another little one that I look at and think WOW, what strength and determination she has. She is in DESPERATE need for a kidney transplant. She is 14 months old and ON DIALYSIS. I can't even imagine. They have had terrible issues with keeping her catheter infection free and working. SHE NEEDS A KIDNEY. They are asking for ANYONE with type O blood to contact them and be tested to see if they are a match for Reagan. Her parents have already been through the process and unfortunately neither of them are a close enough match to make the transplant a successful one. If you feel led to help this family please contact the Transplant Center at the University of Minnesota at 800-328-5465. Press "0" for the operator and ask to speak to Cathy Garvey. She can provide information on living donation and answer any questions.

Lastly I would like to ask for prayers for Ryan and his family. He was born with a terminal mitochondrial disease. He was recently sent home on Hospice and his family is cherishing every single second they have with him right now. His mother and Ryan lived in the hospital for several weeks recently and to say they have been through the ringer is an understatement. Please offer prayers and encouragement on his page (click on his name).

All that being said I just want to remind everyone that reads my blog to HUG YOUR CHILDREN TIGHT, thank the Lord above for their health. All of these families had a "normal" life before their children were born or became ill. None of them thought anything like this would ever happen to their family.....they were just like you. You NEVER know what life is going to throw at you, never.

Cherish every moment.

I will leave you with this. The first time I read it was on Ryan's site. It is SO TRUE and I know echo's my feelings and probably most other special needs family's feelings too.

"Someone I Love"

Someone I love relies on me in ways you will never understand.

Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.

Someone I love is unable to advocate for themselves for things that most of us take for granted.

Someone I love will never have the opportunities that every child should have.

Someone I love will need unconditional love and support after I am gone-this frightens me to the core.

Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others.

Someone I love has needs that require me to allow 'outsiders' to have power and input in areas that should be mine alone to meet.

Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.

Someone I love has needs that require more time and energy than I have to give.

Someone I love has needs that mean I am not able to meet basic needs of my own.

Someone I love has needs that have become the driving force behind major decisions my family makes.

Someone I love has changed me in ways I will never be able to describe.

Someone I love has taught me about love and about the really important things in life...

YAHOOOOOWEEEEEE

After..........

One year
40 Hours of MAPPS classes
Several psychological Evaluations
Countless family Questionnaire's
Six references
Two physicals
A fire extinguisher
Two Licensing Specialists
Two sets of fireplace doors
One Health Department Inspection
SIX home studies
A toddler bed
8,356 signatures
One entire fax ribbon
Countless Emails
Answering the same questions OVER AND OVER again.
Three "forgotten" forms
Two of which needing notarization
Countless mistakes made by an incompetent person (who shall remain nameless)
Being offered a baby one day and then denied it the next.
Making a great new friend (Sarah :-)
Lots of frustration and some tears (okay and a couple cuss words here and there)....

OUR HOME STUDY WAS FINALLY SENT TO "THE ZONE" TODAY AT 2:30 pm VIA COURIER TO THE DEPARTMENT OF CHILDREN AND FAMILIES FOR APPROVAL!!!

Let us take a moment in celebration by watching this dancing pickle!




I have been fighting and working towards getting this sent to the zone for the past month (as our home study has been ready for at least that long). Thanks to my mother (for reasons I won't go into right now) things really got moving today and all of my problems that I had been having have been solved.

Now we just wait for the "zone" to approve us and we will be licensed. I know they are in DESPERATE need for baby foster homes right now (again for reasons I don't know if I can go into right now or not) and I do believe that once we are approved by "the zone" we will have a baby that same day or VERY quickly after.

Please pray that since our home study is NOW in the FINAL phase that things will move smoothly and swiftly.

Makily + Sleep Study + C-PAP = NIGHT FROM HELL

I like to call this one "Bad Hair Day"


So last night Makily and I drove to Orlando for her sleep study with C-PAP trial.

It sucked.

I knew it would not be enjoyable but didn't realize there would be times I would want to start crying myself.

Thankfully we got the same guy we get every time we go so he remembered Makily (she IS unforgettable you know!?). He has a special needs daughter too so that always is a plus.

He put all the stuff on her for the sleep study part. This includes LITERALLY 30+ wires from her head to her toes and three belts strapped to her chest/abdomen. Plus of course she was hooked up to the feeding pump for her overnight feed. To say she was tethered down is an understatement.

She was very cooperative with the "wiring" part until we got to her face area and everything went downhill from there. She cried and cried.

Then we had to get the c-pap mask on her.

OH JOY, OH BLISS!

The tech and I agreed that the best thing to use was a full mask covering her nose and mouth because Makily is such a mouth breather at night. So that's what we started with. SHE WAS PISSED! It took several tries to get it adjusted just right. I had to assist the guy and hold Makily down at the same time.

I felt like I was wrestling an alligator. This kid sure can wiggle out of things and fight when she wants to. I am almost 100% positive she kicked the guy in the nards at least once maybe twice actually. I apologized and then giggled on the inside to myself.

We finally get the mask on right and he turned the C-PAP on.

MAKILY FLIPPED OUT!

She panicked and was SCREEEECHING while trying to pull it off. She had such a scared look on her face and kept reaching towards me and crying. I really wanted to cry for her. I couldn't even pick her up because she is connected to all these wires, wires that if they get pulled off have to be put back on and I didn't want to go there again. She was so upset. The tech told me it was normal and that once she realized she could breathe with the machine she would be okay....I wasn't convinced. What sucks is she had no idea what was going on and I am sure it really was scaring her with this huge thing on her face blowing air on her.

He turned off the light and left the room while I laid in the bed with her and sang "My Kily" (My Bonny lies over the ocean....except I put in My Kily, she thinks this is great). She cried for about 20 minutes and then all the sudden got really still and quiet. Her eyes were still open though and it freaked me out. I was afraid to move for fear she would freak again but on the other hand I was worried that she just all the sudden chilled out. I got up to get the tech and she started freaking out again. The tech came in and said she was fine, I told him I had gotten concerned and he said that there was no seizure activity and that she was okay.

So we went through another 20 minutes of crying and fighting until she calmed again. She would fall asleep for a few minutes and then wake up crying.

We took the full mask off after about an hour and put on just the nasal mask. She HATED this too but tolerated it much better than the full face mask and actually closed her mouth while she slept which really surprised me. I tried getting out of the bed a few times and she WOULD NOT allow me to leave her side. It made me feel good.

The tech came back in about 4:30 am and said he had enough of a reading for the doctor to review. He said that Makily is a tricky kid and that he had a hard time getting just the right settings for her during each stage of sleep. He said he didn't find one particular setting that is perfect for her but that the doctor who reviews the study will go over it all and decide where to go from here.

I am so tired but am so awake I can't even sleep. I slept maybe two hours when we got home and have been up ever since.

I need a Margarita.

I'll leave you with these pictures from the last several days.

This morning before her bath after her sleep study:
Her lovely hair




Splashing the water


Yes I successfully taped my glasses "nerd-style". It took some doing but Allen and I got it done. I wore them for the drive to Orlando last night. I was sure to take them off before I went in for the sleep study for fear they would think I lost my mind....and I have.

It's sexy right?

My sweet girl in all of her BLUE EYED BLONDE HAIR glory! ;-)


**Michele recognize the outfit?**


Sleeping on the couch now.....(the red spots on her face are left from the electrodes stuck on her head)

Serenity.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

After yesterday's "excitement" I received SO MANY emails and comments of support. My blog got 400+ hits and so I have decided that this person's evilness turned into something good. Thanks to her that many more people know about Emanuel Syndrome and what it's like to have a child with a disability. I can't count how many people came to my blog yesterday and then went and read Makily's birth story and diagnosis day. Due to this woman's hatefulness Makily has educated even more people in what true unconditional love is. She has yet again shown people not to sweat the small stuff.

I have also realized that some people can't be changed. The more people rebutted this woman the more she continued to say mean things. She is old and set in her ways. So I thought the Serenity prayer was rather fitting for today's entry. I can't change this lady, I know it, I accept it and I will move on.

I admit that that my heart fluttered with each comment of support and love for my child. Some of them were not very nice to "the woman" and while I may eventually remove the nastier ones, I would be lying if I said they didn't make me smile....just a little. It reminded me of when I was a kid my and sister Deborah would not let ANYONE pick on me. I was in awe of how many "big brothers and sisters" Makily has all over the world....that have never met her personally but that she has touched just the same. I am so grateful.

I am uplifted by all of you.

Thank you for loving my baby like she was your own.

So to the person that made all the ugly comments on my FOUR YEAR OLD'S video (I won't write her name on this entry because she is not worth it) THANK YOU for helping to spread awareness of Emanuel Syndrome. Now even more people know about it and are learning what it is to love unconditionally. They are learning that just because you can't walk or talk does not mean you can't change THOUSANDS of hearts and lives. That a person's value has nothing to do with their intellect but everything to do with the mark they leave on this earth.

I will leave you all with this. It is a statement made by a dear friend of mine named Marnie. I have never met her in person, but I have known her since Allen and I began our struggle to concieve Makily. We have spoken on the phone and she is as funny and sweet as she is online. She has supported us and uplifted us during times when I didnt think I could even get out of the bed in the morning. I sat and read this today with tears streaming down my face.

Thank You Marnie, I love you honey.

I was thinking about Trish's you tube last night

And It had me in tears thinking about how your life can change in One single moment. How that woman was so hateful she could not
see past the hurt she wrote on her computer keys. And How it would actually Be read by the mother of that Child... What would her words do the Mother who loved that child? Sometimes we never think 2 seconds of the words we say to some people.

The more I thought about this the more it Got me Thinking Of that Question.. The One you don't want to think about, Trish. I just have to let you know that is a question ANY ONE OF US COULD FACE ANY MOMENT. We could walk out our door today and with one single accident one of our children, Our husbands Or us could be the one that would be forever unable to care for ourselves. What would happen then? We all know. We would pick up the pieces and do the best we could. We would love like we have always loved.. cared like we have always cared. It makes NO DIFFERENCE if we are born with a Disability or it comes to us in Life.
Makily was made in the likeness of God, and he Made her just the way he in visioned her to be.. to Become. He knew that through her perfect blue eyes she would touch so many people around her. Those eyes will NEVER change. The bounce in her hair, the warmth of her smile.. You will look at her at 12 and still see the same love you SEE RIGHT now. You will look at her at 18 and be amazed how much love this single child had brought to your life. The same as every other mother here will.
God knew the moment you were born, Trish, that You would have a child that would NEED YOU beyond time or measure. God knew YOU could handle such a responsibility. No greater compliment is that.. Nothing.
I just thought instead of reading something so negative , like yesterday, one should read something of love and acceptance.

Makily touches people everyday. Your love and devotion to her helps ME be a better mother. I love you.

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Makily I love you with every ounce of my soul.
You are amazing. Your value is immeasurable.

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*Sidenote: Makily and I are headed to Orlando tonight for a sleep study with C-PAP trial. Please pray that the night goes smoothly and that we both get at least a little sleep.*

Hurtful People.

When I decided to start Makily's blog and put her videos on the Internet I knew that I was risking some people would be mean or say hurtful things. I felt the benefits outweighed that risk though. Her videos and this blog has comforted not only myself by many others that have read it and watched my baby girl grow and develop.

I know my child has helped so many.

She is a LIVING, BREATHING MIRACLE.

In the four years of her life though I have not had anyone openly say hurtful things.

I guess we have been lucky until now.

Today I got a message via "youtube"saying that someone had left a comment on one of Makily's videos.

I read it.

Then had to re-read it several times....with tears in my eyes mind you, to make sure I was reading correctly.

Here is link to the video the comment was left on LINK TO VIDEO

This is the video itself:



This is the comment that was left by:

Hanna611

"What is the future for this child who is barely aware of her environment. What happens when she's a teenager or adult and not so cute?"

The only word that keeps coming to my head when I read that is "UGLY".

I don't even know what she thought she could accomplish by saying that?

Was she intentionally being mean?

Did she see that video and think "I want to hurt her mother's feelings"?

Does she think that I am oblivious and that I don't worry about Makily's future every second of every day of my life INCLUDING in my sleep.

How can she say Makily is "barely aware" of her surroundings? She is playing with a toy in the video, drinking her bottle, listening to music, dancing in the car and snuggling with another toddler........is this lady blind?

Even if Makily was not as aware as she is, what is she suggesting should happen when she is grown and not soo cute anymore!?

Should we just have let Makily die?

Should we have left her in the hospital to rot!?

So to answer your question Hanna611, if we are lucky enough to see Makily grow into adulthood she will have touched more lives and hearts than you could ever imagine. She will have changed people for the better without uttering a single word. She has already saved the life of one "normal" (one that I am sure you would value since she is "normal") baby girl.

How many lives can you say you have changed or saved?

We will continue to love her and care for her until she or we take our last breaths on this earth. That is the reason God put me here on this earth. To nurture and love one of his perfect angels. I know my reason for being here do you?

I wonder what you would do if something horrible happened and one of your children was left unable to care for themselves?

I pray for your children's sake that nothing like that ever happens to them.

Clowns Of God.

Saw this "poem".

Loved it, typed it up pretty and had to post it here.

Not sure about the title but it's beautiful just the same.

ENJOY!

TAGGED

I was tagged by Jacolyn and so here it goes

Here are the rules:

1. Link to your tagger and post these rules on your blog
2. Share 7 facts about yourself on your blog, some random, some weird.

So here we go.

1. I have a horrible obsession with picking my feet. I know this is terribly gross and some of you are probably wondering why you read my blog. My feet are so dry and crusty that at night when I get in bed, my heels almost Velcro themselves to my blanket. My niece Tara got me a Ped Egg for Christmas and I get GREAT JOY out of seeing the pile of white shavings left over after I have "grated" my feet. Sometimes the pile is so big I honestly think you could make another entire foot out of it.

2. I hate getting gas. I will drive the car until it is totally on "E" and then pray all the way to the gas station. (I have only run out of gas twice in my life)

3. I met Gary Coleman once, he shook my hand and stared at my boobs.

4. I LOVE soft, fluffy blankets. Especially when they are right out of the dryer. It does not matter where I am, if you put a soft, fluffy, warm blanket on or near me...I will fall asleep in minutes....if Makily is snuggling with me, then it's mere seconds.

5. My parents used to take my sisters and I to the local county jail every weekend. We would sit in a room with 20-30 inmates for an hour or more at a time.

6. As a teenager I had a tremendous crush on Joey McIntyre (OMG is he HOT or what?) of New Kids On The Block and today when I found out today they are getting back together....I got TERRIBLY giddy inside. Allen just rolled his eyes at me as I watched the announcement on the Internet this morning with a HUGE goofy grin on my face.

7. I can't see. I hate contacts so I wear glasses. Problem is I loose my glasses ALL THE TIME. Last time I went to the eye doctor I bought TWO pairs of glasses. I lost one in Orlando during Makily's last sleep study. The other pair I was trying to adjust (they were falling off my face) and I broke them right in half. I tried to tape them together nerd-style but they wouldn't stay together very long. The other night Allen and I watched a movie here at the house. I wanted to see it better so he literally taped the two halves of my glasses to my face. I looked like a total moron but I could totally see the movie! I really need to get them fixed huh?

Bad Day / Good Day

So for all that have been following along with the whole "foster parenting license" process with us just thought I would give you yet another update on things.

We got all of our affidavits from out backups to our Licensing Specialist (LS) Tuesday night. Now mind you they all had to get these things notarized so they rushed around getting it done as quickly as possible. Our LS tells us that our packet will go to the zone Wednesday morning.

FINALLY WE ARE DONE....... I THINK.

Well no, I should have known better than that.

She calls me yesterday afternoon and says she "forgot" we had to have ANOTHER form signed and notarized. All four of my backups PLUS Allen and I.

It took every ounce of patience in me to not jump all over her right then and there.

After everything we have done getting things together she FORGOT something else.

I tell her to fax the form to me so I can get it done as quickly as possible. I go to hook up our fax machine and it's out of ribbon. THAT IS HOW MUCH WE HAVE USED IT FOR THIS FOSTERING PROCESS!

I run to staples like a mad woman and get another ribbon. I have to call her back but she faxes it to me.

Somehow all my backups got it done, Allen rushed to get his done before he left for the road yesterday.

This morning I fax it all to our LS. I call her and tell her it is all at the office and I have confirmations that it was sent. She says great.

Makily was feeling great and I was going to send her to school today (the antibiotic has REALLY helped her!). Well they had a field trip to Silver Springs so Makily and I met her class there.

SHE HAD A BLAST. It was the first time in almost three weeks that she has been out and about and SHE LOVED EVERY SECOND OF IT (well almost). All the other kids were happy to see her and Makily was thrilled to see her teacher and Mrs. Leslie. We had so much fun and the kids were all so good. We even went to a little animal show and they brought the animals around and all the kids got to pet them. Makily liked the Raccoon and that was about the only one she was interested in touching. I have a montage of our day at the bottom, you'll see.

So we leave Silver Springs and I check my phone and see that our LS left a message.

GREAT!

She says that she only received TWO of the SIX forms. HOW THAT'S POSSIBLE I DON'T KNOW, I got a confirmation on ALL of them. I assume someone at the agency got bored and made paper hats with them or had an uncontrollable urge to shred something.

WHO KNOWS AT THIS POINT!?

I call my mom at work and she re-faxes it to two different numbers. Then my mom CALLED THE AGENCY HERSELF and said "Did you get this fax!?!?!?" They said they have it. I called our LS four or five more times afterwards and never heard back so I don't know what is happening now.

Enjoy the montage of today at FLORIDA'S SILVER SPRINGS!

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

Four years ago today.....

Five weeks old.


Makily Ashtyn Caldwell
April 1, 2004 8:07 pm
5 pounds 10 ounces 19 inches long.


.........I laid in a hospital bed trying to have you.

Four years ago today I was so anxious and excited about the change that was about to happen in my life. My little girl, how beautiful she would be. I just knew you would have a head full of black hair. You would be just like me. A lifetime of dreams I had planned for you my daughter. Tutu's, curlers, dollies and ballet slippers. How much fun this was going to be.

Four years ago today your room was freshly painted. Fit for a Princess we had planned it so meticulously. Brand new bottles waited for you, enough clothes and toys for THREE little girls, but no, it was all for you.

As the pains grew closer my anxiety built. You were almost here and I could not wait to see your beautiful face. The room was filled with joyful, anxious tears. So many had waited and longed for your presence.

Then all at once you were finally here. The room became silent, it was deafening. I strained to hear that glorious cry. The one I had dreamed of for all of these years. The cry was not right, you sounded so small. The words "cleft palate and skin tag" echoed through my brain as you were whisked away from me. Nine months of being as one, now you were taken all in an instant, I felt so alone.

The next several months were filled with such grief. You experienced more pain in your first year than I have my entire life. The guilt of that weighed so heavy on my soul. How could I do this? It's not what I had planned.

Time carried on and you grew so strong. You struggled and struggled but you wouldn't give up . In awe of your strength, I started to see. You were more precious than any "dream baby" could be.

My heart broke for the "dream baby" that was not in God's plan. As I let her go I embraced all that YOU ARE and all that you WILL BE. I am grateful for all the hearts you have touched and lives you have changed. I am stronger, better and more compassionate, all because of you. Your joy is my joy, pure innocence and perfection you are.

I took back all those bottles, I replaced them with tubes. The tutu and slippers have left a sore spot. Though you dance in my dreams and always in my heart.

I love you forever and ever Makily. You have made me who I am today. I have learned so much from you in the past four years and I can only pray that I can give you all you have given me. I am so BLESSED to be your mother.

**Read post on 3-31 for update from Makily's doctor's appointment and video**