Goodbye Sweet Reesie.

I had posted a few entries back that little Reesie passed away last Thursday.

Saturday is her funeral. I wish I could be there.

I knew I would do an entry dedicated to her but I have struggled with my words and thoughts.

I had spoken to Reesie's mom Ashley a few times over the phone. She was so sweet and exactly the person I imagined she would be. I remember her saying that they just wanted to know they had done everything possible to help Reese. That she wanted her to be comfortable and happy.

I remember the first time I saw their blog. It took my breath away when I saw a picture of Reesie's tiny face. She had THE EXACT same skin tag on the SAME CHEEK as Makily did at birth.

Makily at four months


Reesie at one month (notice the matching skin tags?)


As I read I was astounded at Todd and Ashley's strong faith. It never seemed to waiver. It took me quite a while to get to the place I am at now with God. I knew immediatley that this was an incredible family with an equally incredible baby girl.



I have thought about Reese and her family all week. I wonder what it must have felt like to have to walk away from Reese after God had taken her home. The pain of that must be all consuming. A parent should NEVER have to bury their child. I thought about the panic and anguish I felt when Makily was having her seizure and nearly died. I remember thinking how I was not ready for her to go, that I wanted to hold her, kiss her, hear her laugh and see her smile one last time. Then I realize that Ashley and Todd must have felt all those same feelings.....but knew that Reesie's body was so damn tired. As a parent they did the most SELFLESS act in letting her go. Their dedication to Reese is to be admired.

Anytime one of our "chromosome 22'ers" dies it hits me like a TON of bricks.

When Payten passed two years ago I was heartbroken. We actually met her at the conference in 2006 and so I was floored that God had called her home.



It also is a HUGE slap of reality to all of our families. I don't know how long Makily will be here. Seeing another child slip away like this reminds me how incredibly fragile and complex our kids are.

Tomorrow is never promised to any of us.

I have hugged Makily even tighter and kissed her even more this week. I am so grateful for every second.

To the Kostjuk's your faith and resilence has amazed me. Your daughter was an angel on this earth. She was too perfect for this awful world. Her work here was done. Take comfort in knowing she is running and playing now. No more pain, no more struggles, she is perfect inside and out.

Sleep well Little Reesie, you are forever loved and missed.



Please click here to visit the Kostjuk's family blog to offer them words of condolences during this very difficult time.

Doodles showing off her skills.

**If you missed my last post YOU MUST read about the amazing gift
that Sleep Safe Beds is giving to Makily. **

CLICK HERE TO READ ALL ABOUT THAT!


Makily has become a PRO at identifying objects/people in pictures using her PECS board. I think now we will start working on getting her to pick what she wants with toys and such. I did the video last week. She had taken a long nap after school and when she woke up she was SO happy. I always try to do her PECS or other home therapies with her when she is in a mood like that. She does so much better for me when she is in a good mood.

One thing that I have learned about Makily is that she understands WAY more than people give her credit for. Sometimes I even don't realize how much she comprehends because she is unable to talk to me. It's when she is using her PECS with such accuracy that I REALLY realize how much she truly does understand. Just remember next time you encounter a special needs child, realize that they may understand every word coming out of your mouth.

I love this child. She's amazing.


ENJOY!

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

Makily's Music.

We noticed when Makily was very little that she loves music. I am told that most Emanuel Syndrome children do.

Certain songs or music make her light up more than others. Her favorite "kid" song is "My Bonny" (although I insert Makily). Whenever the song starts she shakes her head, kicks her feet and grins. She does seem to like top 40/dance/pop music. Allen listens to a lot of alternative stuff and she really likes that.

So here's a video of Makily and Daddy singing and listening to music. This is all from over the weekend. Please excuse the mess that is her hair in a few of the clips. She had just gotten out of the tub and we hadn't brushed it out yet. It's looking pretty crazy!

Make video montages at www.OneTrueMedia.com

"OMG her button is gone!"

So Sunday after church Makily decided she would take a three hour nap. Allen got her up and put her on the couch in the living room. He went to hook her up and yelled:

"OMG, HER BUTTON IS GONE!"

Inside I panic because I am thinking....."How long has it been out?"

I could hear her surgeon's words echoing in my head.

"Wow Makily's stoma really closes up quickly when the button is out."

Since she had napped for three hours it could have been out three hours or five minutes. If it had closed up, well you can imagine what we would have to do then.

My stomach was churning.

Allen and I both run to her room. He finds the button in the bed....balloon deflated. I check it and there is a BAD leak in the balloon. So bad that I can see the water squirting out the side of it.

*sigh*

So I run into the den and start digging through all my g tube supplies. I am a freak when it comes to Makily's g tube stuff and I keep everything. When we replace her button with a new one (every three months or sooner if it's leaky or the balloon pops) I sterilize them and then I put them in a zip lock baggy. This way I always have something I can put in there if I am EVER stuck in a position where I can't get my hands on a new button. They aren't the easiest things to get ahold of by the way....especially if it's in a hurry. Been there done that.

I find a button that isn't leaky (the balloon just inflates uneven for some reason?). I decide I will put that one in since I don't have a new one.

Why don't I have a new one you might ask?

Well you see our home health company will ONLY send me ONE every THREE months. Every now and then there is a short period of time that I don't' have an extra, new button because I had to replace Makily's early for one reason or another. This just happened to be a two week period where we don't have a new one to put in.

Does Makily have impeccable timing or what?

So I go to put in the button, I slather it with lubricant and I try to get it to go in.

Makily is crying, my hands are shaking and I am pushing and pushing....it's not going in.

I try again after squirting half the tube of lubricant on the button and Makily's tummy.

It would not go.

I want to sit down and cry but know I don't have time to do that.

Then I realize I have a new button one size down (meaning the width of the button) in her closet. The home health company had sent it by mistake months and months ago.

I get it ready to put it in.

I say to Allen if this doesn't go in we will end up in the ER and by the time we wait and they get us back I doubt we will be able to get ANYTHING IN THERE, not even a foley catheter (they sometimes use those to hold a stoma open until something more permanent available...of course I don't have a foley at the house but believe me I am getting one now). Most likely Children's ER in Orlando would take us right back but they are two hours away.

Time is not on our side here.

I squirt more lubricant all over the new button and Makily again (she was a slippery little girl by the time I was done). Honest to God I prayed over the button and Makily's tummy (a quick prayer though).

I pushed the button into the stoma and it slid right in....EASILY on the first try.

I inflated the balloon, put gauze around the button and then BAWLED my head off.

It's strange to me how I totally hold it together until it's over and then I completely loose it afterwards. Allen sat Makily up and would you believe she squealed happily and clapped her hands together like we had just read her favorite book? She is such a trooper.

I had a "she'll never" moment the other day. Totally unexpected and out of nowhere. I was watching John and Kate plus eight. They had taken one of the older twin girls (I think it was Maddy?) for her "one on one" day with Mommy and Daddy. They went to the mall to get her ears pierced. As I was watching I imagined what it would have been like to take Makily to get her ears pierced once she had decided she wanted it done. I thought about what a great Mother/Daughter bonding day that would have been for us. I had my ears pierced when I was six and I still remember it to this day. Makily will never have that day with me. I cry just typing that. She will never be able to make the choice to have it done, and honestly I wouldn't put her through it either. She has been poked more than any four year old ever should so don't think it's fair for me to decide that for her.

She started some private therapies this week. We'll see how that goes. I'll go into more details about that in another post.

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Things are still looking very good in our favor for J. There are so many details and ins and outs to his case. If I were to update on everything going on with that most of you would be scratching your heads. It's all very confusing and at times contradictory. Just know for now things are in our favor. I did seek some professional advice which I knew would be brutally honest with us. I just wanted to know the actual legal aspects of everything from an unbiased person. It was all good news for us on that front too.

Sorry it's been so long on an update. I have actually been writing this entry for a day or two but kept being interrupted by one or both of the babies....I love it.

Happy Mother's Day.

This Mother's Day is an amazing and emotional one for me.

To my babies.

My precious miracle Makily.

You are the child that changed me forever. The child I have watched fight from the brink of death more times than I like to admit. You are the child that has given me strength when I didn't think I had any left to give. You have shown me what Love really is. You have connected me to a circle of so many people that have enriched our lives. You have made me a better person. You have taught me what is important in life, your determination has given me hope when there was none to be found. You are the reason I was born. You ARE my purpose in life and ALL things in my world lead back to you somehow. Because of you I have done things I never would have thought I had the strength to even attempt.

YOU have led us to your baby brother.

You are my center, my love and my life.



Sweet Little J


My first foster baby, my first boy....my first son.

You have only been here a week and I love you like my own. While my heart aches with fear of the future, it soars when you smile at me. Already you know that I am "Mommy" and I am overwhelmed with joy because of that. I pray that God's plan is for you to stay with us forever. If you leave us, you will NEVER be forgotten and you will take a piece of my heart with you. You stole it when you happily smiled at me and immediately cuddled into my arms when we first met. You made it impossible not to attach myself to you, I never had a chance sweet one.


Being a mother is the best thing that has ever happened to me.

I am so thankful to God for giving us these two blessings.

I love this song. I am stealing it from Jen's blog today.

All over the place.

If you recall I submitted all the paperwork OVER A MONTH ago (March 17th) for Makily to get a Sleep Safe Bed. I called Apria (the home health company) two weeks ago and spoke with a lady named...well we'll call her Nicky.

She says:

"Mrs. Caldwell I submitted that THE SAME day you sent it to us.....I LOVE a challenge, I am going to stay right on top of this, the insurance company won't even talk to us about this until it's been 30 days so I am putting it on my calendar to call them when 30 days is up"

Inside I laughed, I've heard that song and dance before but whatever.

So it's been over a month now, I call BCBS, of course they say they have no idea what the heck I am talking about. I call Nicky back at Apria and she says "Who did you talk to customer service"? I say "uhm, yeah who else would I talk to?" She replies with "I need to call this other dept, they will know about it". I ask her for that dept's number and she says she will call them for me THAT MOMENT.

FINE.

I don't hear back from her the rest of the day.

I call the next morning and she says they told her the same thing, they don't have it.

So I have waited A MONTH ON NOTHING!

To top that off, it will be at least another month for them to review it and of course deny us.


Nice huh?

I asked her if she spoke with anyone when she originally sent it and she said "I usually don't, typically I just fax it over to them".

God forbid she call and MAKE SURE they got the fax and that it was being taken care of.

She said she "re-sent it" and that if I would like she would "put it on her calendar" to check on it in two days.

I laughed at her and said:

"No offense but that's what you said to me the first time I called, you never checked on it and if it weren't for the fact THAT I CALLED, I would still be sitting here waiting and they STILL wouldn't have it, so thanks, but no thanks, I will continue to take care of it myself because that's the only way I know that it's going to get done".

I didn't even give her a chance to say anything back I just hung up.

I am so tired of having to go behind people to make sure things get done for Makily. It makes it very hard for me to be nice and pleasant.

On a good note the CEO of Sleep Safe Beds contacted me via email. His wife found my blog. He said that if we have problems getting coverage to call his office. They have someone there who specializes in working with the insurance companies and getting things paid for. I was really impressed that they contacted me. It was really cool!

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We are still waiting for a placement. I talked to the Director of our agency today. She is very, very nice and I thanked her for all of her help. Once her and the director of licensing found out about the struggles we had been having in getting our license, they took over and we were licensed within two weeks. We got the hard copy of our license in the mail yesterday. I am so framing it. She (the director) went into the placement office while we were on the phone to ensure they had our names and check to see if they had any babies. None for Marion County right now so we just are playing the waiting game. I sleep with the phone, waiting for the call. Allen and I are reallllllly excited.

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Delaney developed what my sister thought was the chicken pox (chickie pops as Delaney calls them) last night. We were actually happy because that would have explained the abnormal blood work. Her big brother Micah asked my sister if Delaney got "chickie pops" because she at too much chicken.


Too cute.

She took her in to Dr. Pierre today and, it's not chicken pox. We don't know what it is. For now we are calling it a "viral rash" but she is not showing any other symptoms of anything else. Since she has the rash Dr. Pierre is waiting to repeat the blood work until Tuesday now. Gotta love the waiting game.

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Makily has a finger infection. Every now and then the tips of her fingers will get red. I assume it's from always have them in her mouth. Typically it will go away within a day or so. Well this time her middle finger got really HOT and inflamed, the skin started peeling, then I noticed her ring finger was starting to blister. I took her in to see Dr. Pierre and it's infected. (I swear between Makily and her cousins we keep her in business huh?) We soaked her hand in Epsom salt water and she thought it was bath time. She "splishy splashed" her and me the entire time. It looks much better today and she is on antibiotics for it.

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Sorry for the lack of really new pictures. I still have not gotten another flash drive and my computer has almost zero memory left. I have gotten rid of everything I don't use and so I know it's the fact that I have a BAZILLION pictures on here. Hopefully I will have it taken care of by next week though!

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.

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***

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!?
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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

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.

********************************************************

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

*********************************************************

*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.*

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**

Congestion, pictures and LAME, annoying questions.

So yeah I know it was in the last entry but I am leaving this montage up for a while. I love it and I am proud so sue me!

Things are improving here. I am feeling so much better. Still a little nasally but I can live with that.

Makily is also doing so much better. She still has lots of congestion so I kept her home yesterday and today. It was COLD this morning and I wasn't taking her out into that. Not worth the risk of her getting sick and running fevers like that again. NO WAY!


Makily's carseat is in! I am so excited. We are going to pick it up tomorrow! Nothing yet on the bed though.


Our Easter was LAME and uneventful. I tried to salvage it by doing an impromptu photo shoot with Makily. She was NOT pleased and I don't blame her. Her button is leaking (it does this anytime she has been sick), she's congested, didn't feel well and just wasn't into getting her pictures taken. The majority of them she just looks pitiful.
Here are the only ones that turned out remotely okay.







This one is significant because......




.......the egg in it is the same one she is holding here.



The foster care licensing is still in limbo. We had a very emotional home visit last week that I do not wish to repeat. Our licensing specialist had some really tough questions that mainly revolved around my being on anti-depressants. She wanted to know when my doctor felt I would not need them anymore. I basically explained that Makily's condition is FOREVER and while I have accepted that it's not easy. That I will ALWAYS mourn what she has lost and what we won't get to experience with her. I said many more things I won't type here, it's too depressing. I fought it but ended up crying which really frustrated me. She actually seemed pleased and said that is the kind of answer they were wanting from me. She also asked what Makily's "prognosis" is. I wasn't sure exactly what she meant so I asked her and she said "life span". That also was NOT an easy conversation to have. I basically just told her we don't know that the oldest case I know of is a man in his 40's. She has requested Dr. Pierre write a letter giving them a prognosis....it's basically going to say the same thing I told them but whatever.

The questions they continue to ask don't stop there. They also wanted us to write out what kind of flooring we have in each room of the house including WHAT COLOR it is. I have no idea why. In one of our questionnaire's I had written Allen and I had been together ten years and he said nine and a half. They wanted to know which it was. I was surprised they were that petty over six months.

She also called us at one point to verify that Makily at times gets constipated and then asked Allen's work hours.

Yes, I am serious, I couldn't make this stuff up if I tried.


I'd be lying if I said part of me isn't starting to fee violated by this whole process.

I'm a tough girl though.

On the mend and BIG REVEAL.

Makily coughed all night but her temp is 99.6 THAT'S RIGHT 99.6! I am so thrilled. She is acting like herself and smiling. Right now she is watching scooby Doo in the highchair playing with her toys happily. She actually giggled several times today!

Dr. Pierre called to check on her and she was pleased that her temps are finally stabilizing. Her urine culture came back and it was fine other than some "colonies of normal urine contaminant" so I am convinced this was just a HORRENDOUS viral bug that we all caught. Poor Doodles has a hard time recovering from stuff like this though. She still looks pretty puny but she is maintaining good temps (we are still giving meds though) and that is what is most important. She is coughing a bit and still has a pretty snotty nose though. I am feeling a little better too.

So I couldn't wait until Monday I am going to post Makily's new "montage" I did. I love it! Hope you enjoy it as much as I did making it.

Make photo slide shows at www.OneTrueMedia.com

Update on Makily (part two of last blog entry)

****if you havent read my blog today, read the entry before this to catch up.*****


So we went to Dr. Pierre at 2:15. Daddy got back RIGHT in time to go with us. She weighed 32 pounds with clothes and diapy on. Her temp was fine.

Dr. Pierre listened to her chest, looked in her ears, up her nose and down her throat. Chest and ears were surprisingly fine (usually a temp like that is caused by one of those two things). She has nasal congestion though and some "secretions pooling" in the back of her throat which we *think* is what may be causing the retching. So basically Makily has a cold. I almost felt like one of those crazy hypochondriac mom's then I reminded myself that I can't play around with temps that high with her.

So we are stopping her daily aspirin and doing Motrin every six hours as needed. I thought we were in the clear fever wise but she SPIKED again around six.....103.5 YIKES. We dosed her up (she was almost due) and it went down. She started retching like crazy soon after so we slowed her feed down (she is back on Nutren JR. now, Dr.Pierre wants her EATING if at all possible).

I will say that when we got to Dr. Pierre's I felt like a REAL IDIOT because Makily's temp was totally fine and she was acting happy as a clam. Here's a short vid. of our visit. I tried to get Dr. Pierre on camera but as soon as she realized I was taping she put the chart in front of her face and kept saying "no pictures...no pictures!"

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

Snott Factory

I don't feel good, look how dark my eye circles are...they are the are the size of Texas!


Last night I put Makily to bed at 8 pm. This is earlier than her usual 10 pm bedtime. We had the LONG AWAITED gastro appt this morning at 9 am so I wanted to make sure we both got a good nights sleep right?

So around 3:30 AM I wake to hearing Makily coughing and retching like crazy. I run in there and her little face is covered in snot. :-( I turned her overnight feed off immediately.
Before I even got to her I knew she had a temp, she was panting (she does that when she has a fever) and her cheeks were RED. I picked her up and almost panicked when I felt how hot she was. I wiped her face up and she started retching AGAIN. She got herself together and flung herself backwards onto the bed (she wanted to lay back down) and the retching starts right back up. I sit her back up and she is fighting me crying, retching, slobbering and snotting everywhere.

Pitiful.

So I get her cleaned up again, check her temp (we do rectal temps around here....I don't trust those ear things as her canals are TINY and they are almost ALWAYS wrong with her).

It was 102.9.

I immediately start thinking "what if she has a febrile seizure" and how much I would FREAK if that happened so I race into our LOCKED med cabinet looking for the Tylenol. (Makily isn't supposed to have Motrin because she is still on Aspirin from her heart cath and Motrin also thins the blood) Can't find the Tylenol when I remember I sent it to the school "just in case" and all I have is Motrin.

I went ahead and gave the Motrin since she was so hot. I stripped her down and wiped her head and face with a wet washcloth (which she TOTALLY DID NOT appreciate in the least).

She laid on me panting until she fell back asleep. I went to lay her down and she immediately woke up and stared at me all pitiful, I of course felt guilty and picked her right back up. We slept on the couch like that for an hour before my back got so sore it woke me up. I laid her in her bed and she stayed asleep.

I obviously called and cancelled gastro as I was not dragging her to Orlando when she needs to see the pediatrician today. :-( I am glad I had rescheduled the sleep study already because that would have been great had she done that there last night. *sigh*

She woke up at 10 happy and "clapping feet" so I thought we were at least through the night and maybe she would be fever free during the day. No such like, she spiked 102.6 again at 11 so I dosed her with the Motrin again (I skipped her aspirin this morning). I started her on Pedialyte 45cc/hr continuous to keep her hydrated, I am not even trying formula until after she sees the pediatrician. So far no more retching. She is cool as a cucumber right now but we have an appointment with the lovely Dr. Pierre at 2:15 today.

In other news we are getting a Britax Adaptive Car seat in the next couple of weeks! I am so excited (you know you are a special needs mom when you get THIS excited over a car seat). I have looked at the Britax for a while but the $500+ price tag turned my stomach. Allen and I have been looking for a new car seat that will have the support Makily needs and we ha vent found anything that will grow with her. We had started talking about just shelling out the money for it when I told him I would see if CMS could help us. Diane at CMS APPROVED it IMMEDIATELY! She ordered it ALONG with the hardware to install the "latch" system in the van. (it surprisingly doesn't have it!).

I also submitted the "letter of medical necessity" to Apria for Makily to have a Sleep Safe bed. . I figured I would go directly through insurance on our first try to see if they approve it. Click here to see video of the bed "in action" starring Luke. I called BCBS of AL to see if they would give me a list of beds they cover and OF COURSE they won't (I am not surprised but I figured I could try right?). She said as long as they deem that the bed is necessary and "reasonable" it will be covered. I laughed openly at her and said "My kid is four and doesn't walk and you wouldn't pay for her wheelchair, we appealed it three times".

She had no response for that.

If they give us a hard time and don't approve it we again will go through CMS to get help. Typically when CMS gets involved things get covered by the insurance company....and eventually if insurance won't pay...CMS will.

Here is the letter I submitted to BCBS of AL to try and get the bed covered. Hey if it works maybe other parents will find this and be able to use it as a template. I must add writing letters like this about your child is REALLY depressing. Unfortunately it is the fastest and easiest way to get it done though because I know all the things the letter needs to include to get it approved. Dr. Pierre is a BUSY woman so it's faster for her, myself and Makily for me to write exactly what the letter has to say to get approved (you would be surprised some of the things they WON'T approve it for), her to review it and then sign it. I am so lucky to have a pediatrician that is so willing to help us with this stuff.

We'll see what they say:

To Whom It May Concern:



Makily Caldwell is a three and a half year old little girl with Emanuel Syndrome. I have followed Makily’s care since her birth. Makily presents with the following: She has moderate to severe hypotonia. Makily is non-verbal and non-mobile and has global developmental and severe cognitive delays. Makily is not potty trained and the large majority of children with Emanuel Syndrome never are.

Makily has good head and trunk control, she can sit up very well unassisted but is unable to go from laying to sitting up. She is able to go from sitting to laying down although unsafely as she will throw herself backwards. She is not able to pull herself up to stand. She can roll onto either side but will not roll onto her stomach. She enjoys kicking her feet and moving her arms but she is unable to walk or crawl.

She was diagnosed with severe gastrointestinal reflux and severe delayed gastric emptying at six weeks of age. She must sleep on an incline to prevent reflux and/or choking. She has a small airway that is secondary to Pierre Robin Sequence with a repaired cleft of the hard and soft palate. Makily has been 100% tube fed since she was six weeks old and has also been diagnosed with moderate obstructive sleep apnea for which she uses an apnea monitor at night. She has been diagnosed with laryngotrachealmalacia, a floppy epiglottis and severe dysphasia. Due to her dysphasia Makily has excessive oral secretions. Swallow studies have revealed that Makily does aspirate thin liquids (such as water or saliva).

Currently Makily is sleeping in a twin bed with a toddler rail on one side and the other side of the bed is pushed up against the wall. While she non mobile she does toss and turn in the bed and has wiggled down past the railing on several occasions. She fell out of the bed onto the floor recently. She is on continuous tube feeds throughout the night as well as the apnea monitor. Her falling out of the bed could result in her g tube being accidentally pulled out. Makily is in need of a medical grade bed so she may sleep safely and without traumatic incident. At present her parents are having to prop her up with pillows to keep her elevated and also to keep her from wiggling down too far in the bed and falling out. While this does remedy the falling issue it presents a new possible suffocation hazard. With the added pillows in the bed, Makily could wiggle underneath one or get trapped between the bed rail and bed and/or pillows and not be able to free herself. Makily could also become entangled in the feeding pump tubing and/or the apnea monitor cord and wiring. She also has a history of a grand mal seizure. She needs to sleep in a bed that does not have hard railing to prevent injury if seizure were to occur.

Since Makily also kicks her feet and then slams them down in bed it is also important that her bed have soft sides and/or railings. She is also on medications for reflux, seizures, excessive secretions and a blood thinner. The bed should have adjustable height so her parents can give her medications and also change her diaper there, as I mentioned before Makily is not potty trained.

The Sleep Safe would be a wonderful bed to meet all of Makily’s medical and safety needs. This bed can be raised and lowered to fit the parent and child’s needs. The entrapment problem is greatly reduced since the headboard and footboard extend past the mattress. The head of the bed also elevates which will decrease reflux and aspiration issues. The Sleep Safe bed also comes with the option of padded sides which would prevent injury to Makily if she were to have a seizure or kick the side of the bed. It is my medical opinion that this bed is a medical necessity for Makily Caldwell.

Sincerely
Dr. Yves-Lande Pierre


I'll update after Makily's appointment with Dr. Pierre.

All About Makily!

Things Makily likes (in no particular order):

TV, SpongeBob Squarepants, Nemo, Swings, being talked to, being sung to, cuddling, jumping in her Jumperoo (although we have to "adapt" it since she is such a big girl now), dancing (you hold her and dance), riding in her remote car, playing with her toys, all the Disney parks, swimming, watching TV upside down and looking at faces upside down (this makes her giggle like crazy), MUSIC, bath time, people with any kind of strange hairstyle, school, Mrs. Leslie and Mrs. Byrd, looking at herself in the mirror, being told how wonderful and beautiful she is, her sleeping bag, her obnoxious turtle and her "symphony" V-tech toy from Laura, her Daddy, watching other kids be naughty, Cops and Police chase shows (she always laughs when they crash), Nanny and Granny....and well okay Mommy :-)

Things Makily HATES:

Hats, things on her face, eating by mouth, laying on her tummy, TV commercials (she screams now when they come on), anything poked in her ears, blankets, shoes, having her teeth brushed, BRUSHING HER HAIR (I get the wrath of Hell every day for that one), water in her face, getting sleepy (she fights it), being put in her car seat, the sun in her eyes, being hot, EEG's and sleep studies.

Like I mentioned above Makily loves music, being sung to and dancing so much. I had her in the den the other night while I was blogging and she was playing. I put some music on and sang and danced like an idiot for her. She loved every minute of it so I decided I had to catch it on video. Makily LOVES my singing and dancing but it has to be INSANE and over the top so Sorry guys you only get to see my baby giggling and not my acting like an idiot for her.

Photo and video editing at www.OneTrueMedia.com

Side note: The foster thing is taking FOREVER. We aren't getting anywhere fast. Our home study was reviewed by the agency and yet again they have more questions. We have answered HUNDREDS AND HUNDREDS of questions you wouldn't believe and I can't imagine what else they would possibly need to know about us. I have not received them yet but I know they are coming via email next week. We are very frustrated especially when they keep telling how bad they need homes like ours. They are desperate for newborn stay at home foster moms. Allen and I have decided to stop holding our breath and sitting by the phone waiting for it to happen. We are going to live our lives and when we get a call for our license then that's great. Will keep you updated.

Random Frustrations.

This will be an entry filled with lots of ranting and raving. It will be all over the place so just bear with me.

1. I am so INCREDIBLY frustrated with the foster licensing process right now I could just cry. I don't know what is going on but I seriously feel so defeated. I call our licensing lady once a week. Last week I call and ask what is going on. She tells me that they (God himself, the mayor, the president who the heck knows who "they" are) haven't even reviewed the FIRST draft of the home study that was sent. *sigh* I call today and asked again what was happening. SAME ANSWER it's STILL not even been reviewed! I just don't understand. We have been going through this process for ALMOST A YEAR NOW! A YEAR!!! I am constantly hearing how there is such a shortage of foster parents, WELL NOW I KNOW WHY! They DRAG their feet so much! I have jumped through every hoop, gotten every piece of paper work, and it's so frustrating that I just have to sit here and wait for someone else to review this stuff. I asked why it hadn't been reviewed and was told "I don't know". What's worse is even when "they"approve it, IT STILL HAS TO GO TO THE STATE OF FLORIDA FOR REVIEW and approval, that can take ANOTHER two weeks (so in their time two months). I don't understand how people like THIS
are licensed to foster while we sit and WAIT! What's worse is I have no one to complain to. I don't want to cause a huge stink because I don't want them to think I am some crazy maniac lady. I WISH WE HAD $30,000 WE WOULD JUST ADOPT! Fertility issues SUCK!

2. My poor baby is a retching maniac lately. The last three nights I have woken up hearing her trying to vomit on the baby monitor. I run in there and sit her up. Last night was really bad and she had only had a little over half of her feed. Our gastro appt is coming up and I am going to speak with him and the nutritionist about putting Makily on a puree diet through her g tube. Zachary's mommy Nikki, contacted me recently about it and told me how much it has helped Zachary so I am hoping it will do the same for Makily. Some thing's gotta give. I feel so bad for her and I don't know what else to do. I spoke with the GI office a week or so ago and they did tell me her upper GI showed "minimal reflux going up past the esophagus". She said that her Nissen is still working except one TINY part that is allowing the "minimal reflux. That could be causing her to retch more but that there isn't much we can do about it other than what we are doing. **I have had people ask me what retching is, well here is a video I found (just a warning, it's not fun to watch). This is exactly what Makily does, it can last anywhere from a few seconds to five minutes of this. When she is able to stop and catch her breath, she cries which triggers the retching again. :-(

3. I hate apostrophe's and every blog I do, I have to go back through spell check and have them inserted (told you this would be random).

4. I had a postal worker harass me yesterday about tape. YES TAPE. I had ebay'd some stuff and took it to the TINY post office down by my house. He came OUT of his cubby to inspect my packages. He said I used the wrong tape. Now understand that I tape everything LIKE CRAZY because I don't want my label to come off or the package to come undone, most of my packages look ridiculous because of the tape. He actually said he wouldn't take my package because I didn't use "clear tape, not scotch or masking". He said my label wasn't going to stay on...I laughed and said there is no way that is coming off, you and I both know that. He told me that I would have to repackage it or take it elsewhere, he wasn't accepting it. Then I thought in my head "am i really sitting here arguing about tape with this man?" SERIOUSLY? I went to the store, bought tape and scissors and came back. I asked him if my tape was "regulation". He said it was but maybe too thin and then asked me if I wanted to use his!?!? I wouldn't have used his tape if it was the last piece of tape on the entire planet. Freaking Tape Nazi.

On a good note the montage for Makily's birthday is coming along nicely. I have more than half of it done already! I figured it would take me longer than it has. I am trying to wait to post it until her birthday but I don't know if I will be able to.

It's that time of year again.

March.......

which is the month before April...

Makily's birthday is April 1.

She will be FOUR!

Most parents rejoice at the upcoming birthday of their child.

Usually I struggle with it.

I remember the JOY I felt all through March of 2004. How elated I was, my baby was finally coming.

Today my grandmother showed me something that I gave her on the day we told her we were pregnant. It was a small gift bag with a pacifier in it. She has kept it and even put a sticker with the date and time I came to tell her.

I couldn't do anything but look at it and cry.

It reminds me of what a happy yet OBLIVIOUS person I used to be.

I am doing another montage for Makily's birthday this year. I pulled out ALL the pictures (we didn't go digital until she was four months), even the bad ones. I sat on the floor in her room and cried.

She looks so bad in some of them.

I will never forget.

ANGER, SADNESS, CONFUSION, SELF DOUBT, EMBARRASSMENT, GUILT, SHAME, GRIEF, HATE, JEALOUSY, FRUSTRATION, LONELINESS, SORROW.

If you bundle all those emotions into one word, that was me back then.

While I am happier than I have ever been in my life, it seems like EVERY March I find myself re-living it all in my head.

As much as I want to be over it and move on, I realize most likely that will never happen.....

....and that's okay.

I wonder what might have been.

Then I remember this IS the way my life is supposed to be and I am a BETTER person because of ALL that we have watched Makily go through. She has changed more people and touched more lives in four years than I have in 30.....and she can't even talk.

I can't make myself NOT feel this way, so I will be sad for a few weeks, and then I will pull my head out of my behind and move on. I did it last year and each birthday before that.

I have also been following Baby Reese, she is four months old. She has Emanuel Syndrome and has yet to leave the NICU. Some of her pictures she reminds me so much of Makily. She had the SAME skin tag on the same cheek as Makily. I look at the pictures of her, I read their blog and it just takes me right back to that place of such fear and uncertainty. I remember telling myself "If we can just get Makily through this....we'll be okay." Then something else would happen and I found myself again wondering when we could relax. Since then I often lay Makily's head on my shoulder and breathe in as hard as I can and try to memorize her smell. When I hold her while she is sleeping I just stare at her and I try to memorize every feature of her face, the way her hair feels when I rub her head, the way she curls up in my arms and makes sleepy baby noises in her sleep.

When Makily had her seizure back in 2006 , I really thought we were going to loose her. I remember standing in the ER watching her body slowly twitching. I could see the doctors struggling to intubate her. I could hear her coughing and gasping for breath and thinking "I am not ready yet". I haven't held her enough, I haven't smelled her baby smell enough times or heard her sweet voice or laugh enough.

The truth of the matter is that you NEVER know what to expect with Emanuel Syndrome children. I know of some ES kids that were doing exceptionally well and then the died out of no where.

They are unpredictable....but I guess life itself is unpredicatable.

Makily's seizure scarred me and when she is at school, if the nurse calls me, I hold my breath until she says "she's okay". I honestly don't know if her body could handle another seizure like that and in the back of my mind, the thought of something happening is always there.

I know I will never hear her laugh enough, stroke her head enough or smell her sweet Makily smell enough to ever be okay with loosing her.

I can never totally breathe a sigh of relief with her.

It's an uncertainty that I will carry with me forever.....

......and that is incredibly hard.

Please pray for Baby Reesie and her family as they live through some
of the most difficult times of their lives.