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**

Another Chest X-Ray.

Isnt she the sweetest little angel ever!?

So we went to Dr. Pierre. Weight was 32 lbs, temp was fine, 02 sat was 91-39%, her mood was GOOD.

She was however very snotty and coughing.

Dr. Pierre came in and I told her about the "retched up" Triaminic the other day. I guess Makily thought it was a good time to show Dr. Pierre her retching skills and proceeded to have a nasty retching episode. She was rather surprised and how hard Makily does this and said it's apparent that it's causing pain because Makily does rub her chest (in a round about way) while it's happening and afterwards cries pretty hard. She is on the highest dose of Reglan and Zantac that she can have. We tried Prevacid before, it didn't seem to do anything and constipated her so we went back to Zantac. I am scared to change much up in that department though because once her stomach acids get out of control we have the HORRENDOUS leaking issue which I DON'T wish to put her through.

Since her 02 sats didn't come up with a breathing treatment off to radiology we went. Chest x-ray came back fine so that was good. So we are now calling this an upper respiratory infection. She is on Cefzil, Phenochlorotan and Xopenex every four hours, Tylenol as needed for the fever.

We came home and slept for three hours which is why it's almost 1:00 AM here and I am wide awake! Neither of us slept much last night so we needed it. I might get my cleaning done tonight since the house is out of sorts since all this started!

I did a short video of Makily's bed set up tonight. I did it to show how ridiculous her bed set up is. She really needs a medical bed. I have more pillows in there really than I should have considering she can't sit up and WON'T roll over but will wiggle herself into positions she can't get out of. WE REALLY need the sleep safe bed. Still haven't heard back on that but I am praying!

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

**Reese did have her heart surgery today and all went well. Please continue to pray for her and her family. The concern now is that she is at very high oxygen settings on the ventilator. Please pray that they are able to start weaning those settings down so that Reese can be extubated and breathe on her own. That's one more step closer to them being able to take her home!**

Where is it all stored.....SERIOUSLY!?

Sorry for the gross "visual" but I seriously believe my child somehow has a container THAT size in her head filled with snot.

I do not have any idea where it is all coming from. It's never ending. I am shocked at the amount of boogers this poor kid has. She coughs and it comes out of her nose AND mouth. Poor baby. Sometimes she coughs and it makes a nice bubble that sticks our of her nostril and it just SITS there waiting for me to "pop" it and wipe it away with tissues.

We have gone through every bib in the house and then some.

She has been getting Triaminic every six hours for two days now.

Last night she woke up COVERED in snot AND with a temp of 103.3.

I am so tired, I know she is tired and MISERABLE.

She started to get better, the temps went away and she actually wasn't coughing as much.

Friday the cough started to come back, now we are right back where we started. She has missed TWO WEEKS of school now. I don't know what to do.

We go to Dr. Pierre at 1:15 today. I don't know what she is going to say.

I wonder if she will be in awe of my child's ability to produce THIS amount of snot?

I will update after Makily's appointment.

*I hope you like my new layout. I have to apologize for the initial font. It WAS terribly blinding and I hope now that I have tweaked my page some that it's easier to read. This is the first time I have used a layout that didn't come right from blogger so it took a bit of adjustment for me but I like it! Very cheery and springy.*

Please pray for Reese (now actually) as she should be going into the surgery to repair her heart. They have rescheduled the surgery a few times and so I know her family is really on their last nerve. It was scheduled to start at 9 am (they are in CA) so please say a prayer for her. Todd and Ashley we are thinking of you and praying so hard for Reese, we have never met but have a bond through our amazing children. Hang in there.

Schmoooozing, Sneakers and Reflux.

So Trishtwo (bff and person who left me to chat with Kool-Aid teeth man) asked Allen and I if we would go to an event with her and Justin (her hubby). She works for the new paper and goes to all these big local events. She said it was a "Tennis Shoe Ball" and your supposed to wear sneakers. Since your wearing sneakers I assumed it was casual dress and said "sure we'll go". Well Justin called yesterday to make sure we were going and I said "yeah, just want to verify that IT IS casual dress right".

He was like "ugh no didn't you hear Trish say you dress up but wear sneakers".

I must have totally lost my mind or gone deaf when she said that part.

Allen had something we could work with but I had NOTHING to wear. NOTHING. So in a mad dash I went shopping to find something. I tried on 800 things to no avail. I finally found a black dress with a rhinestone embellishment and tried it on....too big, got the next size down...still too big but it was the smallest size they had

GREAT!

It was either that or don't go though so I bought the dress that was a smidge too big anyway.

Might I add that clothes shopping for me is a NIGHTMARE! I am almost NEVER the same size in any two brands of clothes. I am shaped like a box and seriously nothing fits me right. When I am really thin (which right now I am not!) it's better but I still have the same problem.

*sigh*

So we met the Teals there. The "Tennis Shoe Ball" was a fund raiser for the Ocala Police Dept. Lots of influential people there all decked out in suits and gowns with SNEAKERS ON. I was impressed that even though I have been a stay at home mommy now for FOUR years I am still able to SCHMOOZE with the best of them. That's one thing I can say for myself, I can pretty much fit in and talk to anyone. I have always been that way.

I had a few drinks and that helped relax me too. It really was a nice time. I seriously needed a break since we have been cooped up for the last two weeks with sick bubby.

Speaking of bubby she is still sick and I really don't know what to do with her. She still has a cough and TONS of snot. I don't know where it all comes from SERIOUSLY! Yesterday after her afternoon feed she started retching, and something actually came out.

THIS IS A FIRST IN ALMOST FOUR YEARS AND SCARED ME TO DEATH!

I had given her RED triaminic because she needed some relief from the nasty cough. She retched and out came RED stuff. I started to freak thinking it was blood and then remembered the medicine. It's not good that something was able to come up. That coupled with the cough that just doesn't seem to go away makes me VERY nervous as far as reflux and her Nissen goes. This is something I will mention to gastro.

The fostering process is moving along. I got a copy of our home study via email today. We have to sign it. PLUS we have to have our backups (babysitters) all sign a "affidavit of moral character" AND get it notarized. This is rather annoying as they NEVER mentioned this and our backups were fingerprinted LAST SUMMER! The goal is to have all this done by Tuesday morning and then it will be sent to "The Zone". We'll see, again I am not getting my hopes up and I refuse to get too excited again until I actually have that license in my HOT LITTLE HANDS!

Here are a few pictures from our evening last night.

Me on the way there:


Nike's and panty hose somehow just doesn't feel right?


Allen and I at the "Sneaker Ball"


Us again


The Teals


Trish N Trish


Me being silly on the way home after a few drinks! :-)
(my angry face, making fun of Allen here)


Allen saying "put the camera down ya fool"!


Getting a headache, I need to go to bed

Moving right along.

So Makily is really doing better. I ended up keeping her home this week from school. We actually were going to take her yesterday. Got her up and ready to go when she started coughing and coughed up a HUGE wad of snot. I knew if the school saw this they would call me to come get her so we just kept her home. I have enjoyed the extra snuggle time with her.

I spoke with our licensing specialist today. She still had a few questions but told me our Home Study would be sent to "The Zone" (the zone is the state of Florida) on Tuesday. I am trying not to get excited because I have thought we were almost done and then ended up having a ridiculous wait for ridiculous reasons.

I didn't get to pick up Makily's car seat this week. Mainly because she's been home sick the whole time. I will go next week, it will be easier. Still nothing on the sleep safe bed yet though.

Makily has a sleep study on Monday night. I am in no way excited about it.

She has her gastro appointment on Wed April 16th at 1:00. If anyone wants to go with me and enjoy all the fun let me know! Allen will be at work for both of these :-(

Makily has a new show to add to her list of favorites. "Yo Gabba Gabba". It is one of the strangest shows I have ever seen in my life. Of course my kid would find it fascinating. Yesterday after her bath I laid her in the living room and she was watching it upside down (she likes it that way, don't know why) while I got all her stuff together. I heard her giggling and decided to get the camera and get her on film.

This is MY FAVORITE song from that show.

It cracks me up EVERY TIME they sing it.

Makily likes it too:

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

Makily on ice....

...and I don't mean figure skating.

Things are no better today. She did well temperature-wise until about 1:45, spiked again to 104.1. This is with Tylenol/Motrin every four hours.

Her blood work came back normal, not showing elevated white cells.

Dr. Pierre thinks it's a nasty viral bug that is going around. She has seen MANY kids with this type virus that is causing hard to control CRAZY HIGH temps. Usually they end up breaking out in a rash and then the temps start to resolve. She got a shot of Rocephin today (strong antibiotic). Even though we still think this is viral Dr. Pierre didn't want to take any chances especially going into Easter weekend. We split it into two shots because she got such large dose and it would have been too sore and painful to put it all in one leg.

I'm no so much worried about the temperature but HOW HIGH it's going with meds on board. I am so, so, so afraid of a seizure with her. When she spiked at 2 today she started doing this weird "twitch" with her arms and legs...she was totally conscious but it freaked me out and we threw her right in the tub.

She had spiked again to 104 at about six tonight. She has been literally laying with nothing but a diaper on and ice packs all around her and one on her head. To the touch she is cold but her temp is still high.

I am feeling a smidge better but that's with LOTS of naps. If I do too much I feel horrible. I can only imagine how bad Makily feels. Allen is home and is taking care of both of us. I am so thankful because I don't know what I would do right now if he wasn't here.

Please pray for the fevers to come down and stay down. Especially pray for NO SEIZURES. That is my biggest concern right now. There isn't anything else we can do other than what we are doing to bring the temps down and it's not working too well.

Make video montages at www.OneTrueMedia.com

So we are really sick.....

*sigh*

Took her to see Dr. Pierre today. Temp was 102. 02 sat was 95% which was good.

Dr. Pierre checked her ears, throat, chest, etc.

I was thinking sinus infection but Dr. P. really didn't see her temps getting as high as almost 104 over a sinus infection. She had a little fluid in her ears but NO infection or redness and like I said the fluid was MINIMAL.

So we put a "bag" on her little hoo hoo and waited for pee. Thankfully she peed about 30 mins later and the "dip" came back normal but it was sent for culture just in case. They swabbed her for influenza (imagine long q tip and saline drops up the nose....no fun). Dr. Pierre drew her blood. Took three sticks which actually is good considering Makily has ZERO veins to work with. They are all either TEEEENY TINY or have hardened from all the previous IV's and blood draws. Like squeezing blood out of a turnip. At one point Makily sat STRAIGHT up from laying down (she usually needs help for that) to see what Dr. P was doing to her foot. I was way impressed and told her what a good girl she was.....she just screamed and then coughed in my face.

Went for a chest x-ray that revealed "minimal lung congestion" but no pneumonia. They put her in the torture tube for the chest x-ray even though I resisted. She really is too big for it (her thighs looked like stuffed sausages in there) but he swears he gets better pictures that way. She screamed the whole time and kicked her feet, I swear had her feet touched the ground she'd be to Canada by now. She was mad....calmed down as soon as I got her out of that thing though.

We are alternating Tylenol and Motrin right now every four hours whether she's hot or not. Still not giving the Aspirin because she's getting so much Motrin right now.

Her lowest temp today was 101.2....remember that's with meds on board.

Dr. Pierre is supposed to be GONE tomorrow (for Easter) but she is going to call in about the blood work results and then call me and let me know where to go from there.

SHE LOVES MY BABY....WE ARE SPECIAL!

If her blood work comes back bad most likely we'll be doing antibiotics which I DON'T want to do (almost ALWAYS tears her stomach up, makes her g tube leak and gives her diarrhea) but she can't keep having temperatures like this. It increases her chance of breakthrough seizures and I would rather have my armpits waxed, give birth AND go to the dentist than Makily have a seizure. As you know when she does something she goes all out and well, just don't want to go there.


Oh and Makily has given me her "funk" too. Lovely. I sound like Kathleen Turner but not in a sexy way...believe me. Allen got home tonight and brought me some NyQuil I took some and I feel very drunk right now. :-)

I have some vid from today but frankly I am too damn tired to upload anything right now. Maybe tomorrow. Right now though I am going to bed.

Keep praying.

HIGH temps....

As always Makily is really keeping me on my toes....and guessing.

Last night I dosed her before bed at 10pm with Motrin. She had no fever but I was NOT comfortable with putting her down without a dose since Makily tends to spike at night.

She woke up retching and coughing at 4:30 am and was running 101.5. I gave her another dose of Motrin (we have just been doing Motrin only since we stopped the Aspirin). She calmed down and fell back asleep.

I woke again at 8:15 to the same retching and coughing. She was H-O-T....and panting.

I checked her and she was 103.6 AGAIN!!

I gave her Motrin, her heart rate was up, she was panting etc etc. I called Dr. Pierre's office and asked if I should just start alternating Tylenol/Motrin every four or if it was okay she was spiking that high less than four hours after a dose of Motrin. They said to be on the safe side to bring her in today at 1:30 because Dr. Pierre is out tomorrow.

So I checked her temp again at 9:00 (45 minutes AFTER Motrin). She was still panting and her heart rate was still up.

SHE WAS 103.9!!!

That's the highest she has EVER been in her LIFE.

I don't understand how she is going UP with Motrin on board.

I put her in a tepid bath and let her stay there for a while. She was happy as a clam!?

I checked her again about 30 minutes later and she was down to 102.3 but I concerned that it's not bringing her temp all the way down......it only came down with the bath AND a dose of Motrin and it's still not "normal".

Her G. G. is here so I can run to the store for Tylenol and other "sick baby" supplies. Right now G.G. and Makily are sitting on the couch oooh'ing and ahhh'ing at each other, playing and watching Sesame Street. This kid is strange....her arm could fall off and she would look at you smiling and give a giggle (just don't pull out a hairbrush because then you would so be in for it!).

I'll post a video later...pray for my girl.


**finished her birthday "life montage" and it's awesome if I do say so myself. I think I will post it next week. Wait in anticipation**

**Oh and Michelle, remember I said we were hoping to keep her well for Easter this year because she had pneumonia last year for Easter?
I should have kept my big FAT mouth shut huh?**

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.

Ya know the house where the tree fell?

Those that know me know I worked in a real estate office for four years. I worked in the front office. We got some pretty interesting phone calls at times. This one I will never forget though. I am changing the name of the Realty company....just because.

Me: Good Morning AAA Realty, this is Trish can I help you?

Caller: Yes, I want to know how much that house is.

Me: Sure I can help you with that....which house are you calling about?

Caller: Ugh, you know the blue house.

Me: I am sorry sir, I don't know all the house colors can you give me some more information on it?

Caller: It's the blue house over by where that one tree fell years ago and it laid in the street for days? You know the house right?

**keep in mind I worked for the largest real estate company in Marion County and we literally had HUNDREDS and HUNDREDS of houses for sale**

Me: No I am sorry I don't know which house that is, can you give me the street number?

Caller: Gosh I don't know, it's down that one street though where that tree fell.

**at this point I am getting a little irritated because how the heck am I supposed to help him when all he can say is the blue house where the tree fell, although I had this happen often**

Me: I am sorry sir, we have HUNDREDS of houses for sale and I am not sure where you are talking about, could you remember if there is a name on the sign, you know like the realtor's name?

Caller: Oh ya know I think I did write that down.....let me look and see.....yes, yes here it is....Eves the realtor's name is Eves.

Me: Eve?
*now I am REALLY confused because we have no realtor named Eve*

Caller: No! Eves.....E-V-E-S period.

Me: Eves?

Caller: Yeah Eves...that is what the sign said.

Me: Can you hold for a moment please?

Caller: Sure.

I immediately realize that the caller thinks that the realtor's name is Eves because the sign said "Eves. 444-444-4444" MEANING THE EVENING NUMBER!

I looked around the office thinking SURELY I will see an agent crouched in one of the conference rooms phone in hand chuckling. Nope, this was not a prank....this was for real.

I became hysterical.

Once I composed myself I picked the phone back up.

Me: Sir, was there a phone number after "Eves" name?

Caller: Yep, it was 222-2222

Me: Okay hold please.

So I go down the entire list of Realtors and their evening numbers and find the correct agent. I transferred the man to the agent and was in awe of this poor man's lack of common sense.

Eves.

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.

I feel like a horse with a carrot dangling in front of me....

or maybe it's chocolate.........perhaps that's why my jeans are too tight?

So after calling our foster agency a few times and leaving messages with the head of licensing I got a call back.

The lady that called said she was "one of the heads of licencing". She says she knows for a fact our home study has been reviewed by the agency BUT that she does NOT know what came of the review. She said "I am sure that is why you are calling to find out if it's been forwarded to the state of Florida or if something is missing right?"

Yeah.

*sigh*

Of course someone else knows the answer to that....and THEY ARE NOT THERE.

*sigh*

She said she would "forward" the email to the "other head of licensing" and that they would call me back. I gave them both my numbers. This was yesterday around hmmmmm..........1:00 pm.

Then she asked me what age group we are fostering....I told her 0-2 but that we prefer newborns. She excitedly said "Oh my gosh we REALLY are in need of newborn foster homes, would you be needing daycare"? I said "well no, I am a stay at home mom and we have many things on hold waiting for our license, if we AREN'T going to get licensed though then I will go back to work but if we do, I am staying home with the baby." She went on and on about how much they need stay at home foster moms for the newborns for bonding reasons. I said "well I have been sitting here at home waiting with an empty crib".

We'll see.

I got off my big butt and wogged today. I went for 30 minutes and didn't push myself. I always feel so much better when I am working out and so I don't know why I ever let myself get out of the habit of doing it. My butt is getting way too big and so I got to do something with myself. I am sure that is one of the reasons my mood has STUNK lately. I am so getting active again.

Back to myself......pretty much!

Okay I have been dusting myself off since my last post.

I just re-read it and wow....pathetic.

I want to thank everyone who left supportive comments. It always helps to read that everyone has those days. I also want to thank everyone that reads my blog. Whether you comment or not I see your visit as a "hit" on my statcounter and my "hits" have really gone up since I started blogging regularly. It's really cool to see people from all over the USA reading about Makily. When I see hits from other countries like Finland, Australia, Switzerland, the UK, Brazil, and MANY from Canada (I see you guys too eh!?) it just blows my mind.

It's uplifting to see that so many people read about my family and love my baby girl! :-)

So I am feeling better today but .....

I really am frustrated with the whole foster parenting thing. I broke down yesterday and called to speak with the "Head of licensing". She of course was in a meeting and so I left a message. No word yet. I am a little concerned that this may ruffle feathers or "stir the pot" since I went above my licensing ladies head. The last two weeks the only answers she can give me though is "I don't know" so I figured I would call someone that could tell me something.

*sigh*

I am starting to get a little worried that we aren't getting any answers because they are concerned about our having a disabled child. I have asked if that would cause any issues from the get go though and they said "no". We'll see.

I will say this though, if I have jumped through all these hoops and waiting ALL this time, and they don't license us....I am going to be VERY ANGRY.

ANYHOO...onto better things.

Since I am on a mission to "perk" up, I will share a few things with you guys that makes me smile!

I have been "blog stalking" as Andrea calls it I happened to find a blog that IMMEDIATELY went to my "favorite" list. Seriously when I was down yesterday I must have watched her "toilet plunger VLOG" video two or three times and cracked up every time. Michelle's little girl has some special needs I can totally relate to her on that level too.

I love her humor!

DAILY GRIND GONE MAD

Check her out, she is HILARIOUS!

I will leave also leave you with two videos that no matter what....make me laugh every time!

Video number one. Nathaniel can really get down. I love his face!


Sticky!? Seriously.....what on earth made him think THAT word!?


By the way can you tell one of my FAVORITE shows is "The Soup"?

Boycotting March.

I feel like one of those weird EMO teenagers that wear their hair in their face and paint their nails black.

As I mentioned before MARCH always sucks for me.

I usually do "okay" unless I have any "extra" problems and then well...just blech. Just been an icky day, Allen had to go to work, Makily is NOT cooperating with me and the gait trainer. My face feels droopy, my jeans are too tight. It's a crappy, lonely and cold day.

Little Noah passed away. He is the baby that Makily was totally enthralled with. I posted a vid a week or so back of her watching him and giggling. He was doing very well and it was pretty sudden.

If you didn't see the video of Makily LOOOVING him here it is::

Photo and video editing at www.OneTrueMedia.com

Please pray for his family, his funeral is tomorrow.

I will spread more joy here with this horrible poem I wrote while sitting here pondering.....life I guess.

I am a big freaking ray of sunshine tonight.

Aching crying
fake smiling
dreaming
wishing, always needing,
never fitting, sometimes forcing
trying to pretend,
It's never ending

What was to be
never will
was is to be
kills me still
wanting, dreaming, wishing NEEDING
aching, grieving, never leaving.

Haunting thoughts of yesterday
fill my aching head.
They won't let go, and no one knows
just where my heart was led.

The guilt remains in that dark place
I can't go back again.

Am I wasting, forever chasing
what my heart has dreamed?
I can't let go, I want to know
was it ever meant to be?

I'll be back to my "normal" self tomorrow...I think.

I might go wogging in the morning, maybe that will boost my mood.

March sucks.

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.