Shopping in yellow.

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

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


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

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

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

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

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

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

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

We really are close.

It's starting to feel real.

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

....what do you do now?

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

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

I am NOT A DOCTOR OR A NURSE.

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

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



Emotionally

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

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

You have a lot of other stress in your life.

You have a sick or colicky baby.

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

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

Who are all these doctors?

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

Your baby is very rare and very special!

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

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

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

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

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

PT, OT, SLP

WHAT THE HECK DOES ALL THAT MEAN!?

Physical therapy, occupational therapy and speech therapy.

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

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

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

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

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

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

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

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

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

*Cooing at four months and giggled

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

*Big grins and belly laughs at six months

*Sat by herself in a bumbo seat at 9 months

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

* First tooth 18 months

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

*Sitting independently indefinitly 24 months.

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

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

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

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

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

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

We just might be almost finished...just possibly...I think.

Tomorrow we have ANOTHER home visit.

I have crossed all my T's and dotted all my I's....at least I think I have.

Last time I thought I was finished until the lady went through the house telling me all these things I had to do. What was frustrating is I had already had two other home visits and was NEVER told any of the additional things this lady told me. We had to get glass doors for our fireplace ($230), get our BRAND NEW fire extinguisher inspected and tagged. A few other little things.

*sigh*

Anyway I have done everything she asked so we shall see what happens. I know she is going to do another psychological evaluation.

I am not really sure how much I will be able to blog about the placements we get. I thought of starting another blog for our fostering journey because I really should be anonymous. I have found a few other foster parents' blogs and so I guess I will take notes from them?

We'll cross that bridge when we get there.

Wish me luck.

Shame on Me.

I have to apologize for my last night's entry.

I ranted and raved about things that really are not that big of a deal. Were they annoying? YES VERY. At this point in my life though you would think that I would have learned to not sweat the small stuff.

God has been trying to teach me patience for the last four years. While I am much more patient than I was before I had Makily, I obviously need more work. My mom and I were talking about it today. When it comes to Makily I have ZERO patience for people who get in the way of her getting the testing she needs or the supplies she needs. If Makily has to be inconvenienced AT ALL and it's someone else's fault well let's just say you better get out of my way. It won't be pretty.

I try but I need to try harder to have more patience.

What's made me think twice about my last entry is a little baby boy named Jack.

I was directed to his "story" by another special needs parent. Since having Makily I have followed many other babies and children with special needs. Some people think I am crazy but I am in awe of these children. How they fight with amazing strength and also how their parents learn to adapt to their "New Normal". Sometimes the story has a sad ending and it does affect me. My heart aches for the families that loose their child after fighting so hard to keep them here. Their lives always touch me though because it makes me appreciate each day...each moment I have with Makily even more.

Jack is a triplet. He has two sisters. They were born early like most multiples. His sisters did pretty well and were able to come home fairly quickly from the NICU. For some reason Jack could not seem tolerate weaning off the ventilator. The doctors began looking for reasons why. They started pointing out small abnormalities they saw in Jack (which by the way did not affect what a gorgeous little boy he is), which prompted them to test him for many different syndromes.

The days leading up to his diagnosis his mother described a feeling of constant dread. It struck me as I read along because I recall that same feeling in the days before Makily was diagnosed with Emanuel Syndrome. I KNEW something was VERY wrong with Makily and not knowing was torture...the waiting....the wondering....the anxiety, it was just suffocating. I felt a connection to their story in a way because we had NO IDEA anything was wrong with Makily until she was born. We were blissfully unaware how hard things were going to be once she was born. We had no idea that our life was going to drastically change. I look back at that time in my life and it's all such a blur. It was like I was watching someone else's life unfold. Like an out of body experience.

On top of that Jack's family had two other newborns to take care of. One of which most likely they found will need heart surgery.

Jack was diagnosed with Mobius Syndrome. He had a pretty severe form and the doctors were pretty sure that his breathing issues would never resolve. The doctors were going to try a few things to get his lungs functioning better and see if they could get him off the ventilator. Unfortunately Jack started having serious oxygen desaturations, his heart rate had become unstable and he passed away in his mother's arms last Wednesday.

I can't imagine the pain his mother and father were feeling.

I have watched Makily lie in the hospital on a ventilator more times than I would like to remember. There were days I sat staring at her and crying wondering how many more times I would have to see her that way. The thought of leaving the hospital without her in my arms brings me to my knees. When she is inpatient I don't leave her....not for more than an hour or two. It's too hard for me. I dread what may happen while I am gone.

Jack's family has inspired me. They are at peace with what has happened. As at peace as one can be in such a tragic situation as this. They know Jack was sent here to change lives and touch hearts. He touched SO MANY in his short time here. He did the job God sent him to do and his time here was done.

After reading the entry his mother put up today I was ashamed for my last entry. Monday was a rough day but my baby is still here. Makily is stable and healthy and full of so much joy. She makes me a better person, she too has touched many in her young life...and I know she will continue too. We are so blessed.

Rest in peace sweet Jack. You may be gone but are not forgotten little one. Thank you for reminding me what is important in this life. I will hug Makily a little tighter tonight and know that God has yet another one of his special angels watching over her now.

Megan, PJ and all of Jack's family...you are in our prayers.

Held
by Natalie Grant

Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would
Take a child from his mother while she prays
Is appalling.

Who told us we’d be rescued?
What has changed and why should we be saved from nightmares?
We’re asking why this happens
To us who have died to live?
It’s unfair.

Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.

This hand is bitterness.
We want to taste it, let the hatred numb our sorrow.
The wise hands opens slowly to Lilly's of the valley and tomorrow.

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.

Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held

Stick a hot poker in my eye...please.

So we had spent the weekend in Orlando with our friends the Teals. We split the cost of the "hotel" with them and it ends up being WAY cheaper than staying in a regular hotel. Makily had two appointments (one of which EEEARLY) on Monday so we made a weekend of it.

I went in yesterday morning to check out of the hotel. I don't have many nice things to say about where we stayed except they had a GREAT pool area (which for Makily is a HUGE plus). They nickeled and dimed you on EVERYTHING. My biggest complaint though is that they do not give you toilet paper. If you run out during your stay, then you have to purchase more yourself. No I am not kidding. The list goes on really but that's for another day.

I go to check out and they tell me we owe them $4.97 for phone calls. I literally laughed out loud at the clerk. We all had our cell phones and NONE of us used the phone in the room. I was not surprised though after our stay there that they were trying to milk another five bucks out of us. After arguing with him he said he would charge it to the credit card the room was held on. I told him fine but it would be disputed. Yeah it's only five dollars but it's just the principal ya know?

Then myself and my sister Elizabeth arrive at APH for Makily's first appointment. It was an upper GI and small bowel follow through. I wasn't really concerned about getting the upper GI as I know she can't reflux or even vomit, she retches like a mad woman. I was more interested in the small bowel follow through because she has either diarrhea or constipation. There is no happy medium with this kid. Gut malrotation is also a common thing in some ES kids and I wanted to be sure that she didn't have any form of that. (I have a mild form myself)

ANYWAY

I check in at the desk and they ask me if I had the script for the tests. I told him no that it had been sent over MONTHS ago from the GI doctor. He says they don't have it and I need to call GI at The Childrens Clinic.

So I call The Children's Clinic and here is how the conversation went.

ME: Hi this is Makily Caldwell's mom I need to get an order faxed over for a upper GI w/small bowel follow through. Dr. R ordered it months ago and APH says they don't have the order.

HER: Ugh Gastro's last day here at The Children's Clinic was on Friday. You know they left and are starting their own practice right?

ME: Oh no, I heard rumors but I didn't know when it was going to happen.

HER: Yeah Friday was their last day. Let me see if I can find the order in the computer for you. Oh here it is. I will print it, then fax it over...do you have the fax number?

ME: OH THANK YOU..the number is ....

So I hang up and think "wow that was WAAAY too easy" to myself.

I go into registration and give them insurance information. She calls Radiology to see if they have the order....they don't....*sigh* She sends us over the radiology waiting room saying most likely they will have the order in a few minutes.

We wait for a while and then the front desk lady decided she would call them for us to check on it. She speaks to someone different who claims they can't fax it over.

*sigh again*

So I call The Children's Clinic back and here is how that conversation went:

ME: This is Makily Caldwell's mommy again, I just spoke with Jennifer and she said she was faxing an order for me. Can I speak with her?

HER: I don't know who Jennifer is......

ME: WHAT? She just talked to me less than 20 minutes ago

HER: Oh uhm well she must have been answering the phone.

ME: ....ugh okay. So can I talk to her!?

HER: I don't know where she is, what can I do for you.

*I then annoyingly explain it all to her again as she will not get Jennifer who knows all this already*

HER: Oh okay well the order is more than six months old so we can't send it.

ME: WHAT, WHY NOT?

HER: My supervisor says.....

ME: Just let me talk to the supervisor....

**she gives the phone to supervisor**

ME: Ma'am I am just trying to get this order faxed over for my daughter. I need it now.

HER: I am sorry but it's more than six months old...it was written in April 2007, why isn't it already done!?!?

ME: *very annoyed* Well I scheduled it once for July and she had A HEART CATHETERIZATION which was more important so I had to cancel. Then I rescheduled it for October and she got sick. So I rescheduled it again for today and you are saying you won't send the order over!!

HER: Well orders are no good after six months you know.

ME: ....*HUGE ANNOYED SIGH* well NOW i know that! So what am I supposed to do!!

HER: Call gastro at their new office...here's the number.

At this point I was ready to scream.

I call the number for the new office and get the ANSWERING SERVICE. *sigh* She says they were supposed to start answering the phones in the office at 8:00 but at this point it was nine and they still weren't. I asked if they had a back line number she could call and she didn't have one. So I ask her VERY NICELY to get in touch with WHOEVER is taking care of patients today and have them send over the order. I was VERY specific about the order and what it needed to say. The front desk clerk in radiology also spoke with her and reiterated what I said.

A few minutes later they tell me they have the order but that they had to make sure the radiologist would use it. Strange I thought. She comes back and tells me that the order ONLY read for an upper GI. The doctor (who is NOT Makily's regular doctor but one of his associates and had no idea really what was going on other than what we told him) called to make sure they got the order and when the receptionist told him it was supposed to say "small bowel follow through" also he said "well that's not what the message from the answering service said" and hung up.

AAAAAACK!!! I wanted to run around in circles screaming while pulling my hair out.

She said they would take us back for the tests in a few minutes and figure out what to do from there.

They call us back and as we are walking to the back my cell phone rings. I answered the phone and wasn't sure who it was when I heard the lady walking us back for the test say that they were ONLY going to do the upper GI. I immediately cut her off and said "we have to do the other test...that is really why we are here". Then she tells me the doctor didn't order any other test and they can't do anything without an order. In the meantime the person on the phone is saying "ma'am can you hear me...did you get what you needed....did you need something else?"

I cracked at this point.

I said

"I am going to have a nervous breakdown right here, everybody HOLD ON A MINUTE".

I find out that the nice voice on the phone was the answering service making sure I got the order. I told her no that I didn't and that I needed it to say "small bowel follow through". She said she would make sure it was done ASAP.

I hang up with her and feel like a TOTAL A-HOLE for just yelling at everyone. I apologized for getting frustrated and explained that I had been trying to get the order taken care of for an hour at that point and that I was GOING CRAZY.

They were very understanding. They asked Makily's history and questioned why I wanted the small bowel follow through. I explained it all and they agreed to do the test. While the test was being done the order was faxed over.

I don't have results for the small bowel follow through...but the upper GI looked good.
Next Makily had a follow up appt with her neurologist. They take us to the back and the nurse is talking to us and says "You know Dr. X is not going to be with us past the third week of Jan right?"

She tells me that Makily's neuro is most likely going to start her own practice and that in the meantime she is only seeing hospital patients. She said we could follow Dr. X when she opens her own practice but they would let us see Dr. O in their office.

I hate switching doctors with Makily. I'd rather have my armpits waxed.

So the new neuro Dr. O comes in the room. I am leery because well I just am with new doctors. I trust no one initially when it comes to Makily's health care (Thanks again Shands Childrens Hospital of Gainesville).

I asked him about Makily's MRI from July. I had been told there was no changes but I got a copy of it myself. The initial one from June of 2006 said "the ventricles are enlarged" while the one from July of 2007 says "the third ventricle is enlarged also". I wondered why the wording was different if there was no change.

He asked if I would like to see Makily's MRI films so he could explain things further. I said "HECK YES I WOULD". So he took me into his office and let me sit in his big doctor chair :-) He showed me lots of pictures of Makily's brain, her ventricles etc. He said he wouldn't say she had hydrocephalus but that she had enlarged ventricles.

What is the difference I asked?

**this part makes me sad**

He explained that in hydrocephalus typically the fluid inside the brain builds up and causes increased cranial pressure. Children with this have headaches, nausea, vomiting and are VERY irritable.

With enlarged ventricles it is different. He showed how Makily's ventricles ARE large and there is more fluid outside her brain. There is not increased pressure and nothing is being compressed. There is room inside her skull.

Her brain is smaller than normal.

When your brain is smaller the fluid in your head increases and takes up the space that "normal" brain tissue would.

He used the word atrophy (which I hate) and said that most likely the brain has shrunk and that is why the extra fluid is there and why her ventricles are enlarged.
He couldn't tell me if her brain has truly shrunk or if she was born this way because we do not have an MRI from birth. There is no change since June 2006 though. As we walked back to the room all I could think was that I have not done enough for Makily and the fact that her brain is small is because of me. I was almost in tears when we walked in the room. My thoughts immediately shifted when my sister said "Makily's button is out".

ARE YOU KIDDING ME!?

REALLY!?!?!?

Makily was asleep on the exam table when my sister went to push her back a little further to make sure she didn't roll off. When she got over to Makily she noticed her button was lying on the table right next to her.

I picked the button up and checked the balloon on it by injecting water into it. Sure enough it has a pin prick sized hole in it. I had to put it back in and tape it to the outside of her stomach.

*sigh*

We finish the appointment and head for home. Once home I called our home health company to get a new button. Here is how that conversation went:

ME: My daughter's button came out today because the balloon has a hole in it. It's only been in two weeks. I need you to overnight one to me. I had to tape this one in her stomach.

HER: Ma'am it's late in the day I don't know if I can get approval for overnighting it.

ME: How about I hold on and you try

HER: Oh okay

****sat on hold for at least five minutes*****

HER: sorry for your wait...did you say you just put it in her stomach?

ME: yes two weeks ago. Can you please overnight a new one?

HER: I just spoke with my supervisor and she says that the manufacturer wants you to contact them for a replacement since it is defective. It only lasted two weeks.

ME: Uhm, YEAH I will do that...BUT IN THE MEANTIME my kid's button is taped in to her belly....CAN YOU PLEASE OVERNIGHT A NEW BUTTON.

HER: Ma'am you need to call the manufacturer, I can't overnight a button to you.

ME: So you are saying you WILL NOT send a button for my daughter? If this thing comes untaped in the middle of the night she will have to have surgery TO REPLACE IT!!! If you guys don't want to pay to overnight it I WILL PAY FOR IT....I will give you my credit card number RIGHT NOW!!!

HER: My supervisor says you need to call......

ME: LET ME TALK TO YOUR SUPERVISOR!!

**placed on hold again for at least another five minutes**

HER: Sorry for your hold are you still there?

ME: uh huh

HER: I was mistaken....I apologize....my supervisor wants ME to call the manufacturer while you hold.

ME: okay fine

****on hold for another five minutes****

HER: i have them on the other line. What did you put in the balloon when you filled it?

ME: uhm....water...what else would I put in it?

HER: well they want to know.....how much water?

ME: 6 cc's.

HER: okay hold on again

*more of the monotonous holding*

HER: Okay they are going to overnight a button to you but the earliest they can do it is in the morning so you will have it Wed morning. I couldn't get one to you any earlier than that myself.

ME: So can I still get one from you guys just in case they don't send it?

HER: I told you I can't get it to you any sooner than they could.

ME: *sigh* Okay FINE, so if i don't have a button from them on Wednesday morning I will be calling YOU!

HER: Okay ma'am have a nice day.


Stick a hot poker in my eye.....please!

So that was the end to my horrible day. I swear it felt like EVERYTHING was a fight and a hassle. I get so tired of explaining myself 800 times to people that really don't care and aren't paying attention.

This is nothing new, I deal with this a lot since having Makily and it doesn't get any better. I don't get why she didn't just overnight the button to me. I can't imagine that she would want to have a feeding tube TAPED into her stomach any longer than she absolutely had to. It makes me mad that I have to fight like that for something that seems SO LOGICAL.

The Caldwells Christmas 2007

We had an AWESOME Christmas. This year REALLY was amazing and Makily has such a great time. We made so many lasting memories.

Hope you enjoy watching!

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

I've come to a few conclusions

As many of you know Makily was admitted to the hospital last Thursday night.

She was having breathing and major feeding issues.

Conclusion #1:
Hospital stays with Makily are going to be a part of "My New Normal".



I will no longer say "this is the last hospitalization" when it comes to her. It's been something I have said many times in the past.

I have been in denial about that for a long time. Last week really showed me that it's just going to be something I have to get used to. She has been in patient 11 times in the last 3 years. While she is healthier now than she has ever been, her little body just can't bounce back from a typical cold like most kids.

Conclusion #2:
I will never totally be over the trauma surrounding Makily's birth. It will haunt me forever.

This hospital stay we were at the same hospital Makily was born at. I avoid this place like the plague. I made the mistake of going to the maternity ward to get a coke (it was closest) and I could feel my heart racing just walking through the waiting area. I wanted to throw up. I vividly recalled my sister wheeling me from the nursery after I had seen Makily so sick and how all I could think was "What is wrong with my baby, I think she is going to die". Just walking through that area brings me RIGHT BACK to that place.

The next day I was headed to the parking lot. There was a lady in a wheelchair with her newborn. I assume she was waiting for her hubby to drive the car around and load them up. God forgive me, I wanted to smack her. I walked past her as quickly as possible. I could feel the the tears welling in my eyes as I remembered how I left the hospital the morning after Makily was born. I was wheeled out with empty arms and grief that surpasses words. My spirit was broken and my heart ached. Why didn't I have that happy moment? Why was our car ride home filled with my sobs instead of Makily's newborn cries?

Why?

There is a reason for all of it. There has to be.

Only God knows what it is.


I have to trust and believe that or I will certainly go crazy.

On the other hand all it takes to make it worth it is seeing Makily hysterically laughing over something as simple as a balloon. Knowing that she is my purpose and she has taught me more than I could EVER teach her. She has made me tougher than I ever thought I could be. She is the strongest person I know. How many three year olds get an IV placed and are smiling minutes later? Makily is one of them.

I'm her biggest fan.

Humbled.

Makily's class had a field trip on Friday.

I wasn't sure exactly what was going to happen or what it was other than a Christmas Party in "The Villages" and it was ONLY for special needs children (for those of you unfamiliar with the Villages it is a large retirement community right outside Ocala). We arrived at a golf course. When we got off the bus there were several ladies dressed up in cheerleader costumes, pom poms and all cheering for the kids. Once we got past them there were clowns waiting with HUGE smiles and stickers to hand out. The kids were LOVING it.

I got a lump in my throat.

We were led to a large tent, and they had dance and Christmas music playing. Many volunteers were there to help and play with the children. I realized then how big an event this was when I was told it was for all the special needs kids in Marion County. There were kids as young as three all the way to 18. I got Makily out of her kidkart and began dancing around with her. She giggled like a little maniac and patted me like a crazy (patting is Makily's way of saying WOW ISN'T THIS FUN!). In the midst of our dancing I stopped and looked around for a moment. All I could see were happy children. Some in walkers or wheelchairs, some with braces on their legs all SMILING ear to ear, singing, laughing, dancing and having a blast. Volunteers were holding kids, dancing with others in wheelchairs. Treating them like they should be treated EVERY day of their lives, like the hero's that they are. I was overwhelmed with joy. What a beautiful moment, what an awesome thing to do.

I had to bite my lip to keep from crying.

Then it hit me.

How much I have changed since Makily came into my world.

Truth be told, five years ago...I would have run from this situation like my hair was on fire. I was incredibly MORTIFIED around the handicapped. I just didn't know how to act and was uncomfortable...and now here I stood surrounded by hundreds of handicapped people and felt incredibly touched and humbled at the same time. Touched because someone cared enough to throw this HUGE party for these kids. More than just ONE someone....SEVERAL someones had come together to put this on for these EXCEPTIONAL kids.

I was humbled for many reasons. One of which is that had Makily not come into my life, I doubt I would have the understanding I do now for these children. I wouldn't look at life or the world in the way I do now. Five years ago I would have felt sorry for those kids and walked away as fast as I could to avoid MYSELF feeling awkward. What a selfish, ignorant person I was. I was also humbled because there were many children there that were SO much worse off than Makily is (there were others that were also much more physically able than she is).

There is ALWAYS someone who has it worse than you do. ALWAYS. What's important is what you do with the life God gives you. How you handle the obstacles you are faced with.

THANK YOU LORD FOR GIVING ME THIS CHILD.

Once we were finished dancing we took the kids to eat. They provided Pizza, soda and ice cream for EVERYONE to eat. There were clowns walking around making balloon animals and hats. Makily was ENTHRALLED with one of the clowns and she stared at NOTHING but him while he made her a balloon doggy. They had face painting, Makily is not too keen on letting anyone touch her face so we didn't get to do that.

Once we were done eating it was off for a golf cart ride.

Several people had volunteered to ride the kids around in their golf carts. I am not talking your regular average golf cart either people. I am talking "Pimp My Ride" golf carts...seriously the one we took Makily on was PURPLE and looked like a Cadillac! It was touching to see 60 year old men helping to lift heavy children out of wheelchairs so they could go for a ride in the golf carts and feel the wind in their faces (which by the way Makily LOOOOVES.

It's the little things in life. It REALLY is.

They had a backdrop set up and took pics of the kids with Santa and then gave them the Polaroid to remember their day. They they were sent off with gift bags filled with cookies, fruit and crayons.

I wish I could figure out who exactly put this on and what organization paid for it. We paid NOTHING for this trip. Not a dime. The entire thing was sponsored by an organization I think is called "Special Kids, Inc". I am having a hard time finding out much about them except they are a non-profit in Lady Lake. I told Allen I was so surprised that we had not heard about this in the paper or on the news, they do this EVERY year, how can they not have been recognized for it? Allen said "they probably don't want recognition, they just do it because it's a nice thing to do".

I had to bite my lip again.

Moments that take your breath away.

I don't know if it's the time of year or what but I have been experiencing and remembering many "take your breath away" moments lately.

One of the sadder parts of parenting a special needs child is the grief. While yes I have somewhat adjusted to "my new normal", there are still times that it hits me out of no where. That feeling of sadness for what never was and never will be. I can be having the greatest of days and something will trigger a memory or thought that re-opens the scars I had once thought healed. We have been re-organizing things in our house and I came across pictures of Makily from the NICU. They were basically the worst of the worst that I had put in a box. My first thought was to put them away and move on but NO, I HAD to look. I don't know why. It sparked a memory that I had not thought about in a long time. A few days later I had a phone conversation with Andrea and I told her the story....through tears mind you. She immediately said "girl you have to blog that!!"

So I am.

Makily was about six weeks old. We did not yet know her stomach was not emptying or that she had severe reflux. She was on bolus feeds....for the non g-tube educated person a bolus feed works like this. A large syringe is attached to the end of the baby's tube. Formula is then poured into the syringe and it is drawn into the stomach by gravity. This is the preferred and fastest way to g tube feed. Typically this type of feeding takes about 15-20 minutes. For Makily it could take up to an hour or more.. This was problematic because she was supposed to be getting two ounces every two hours. By the time we would finish a feed it was time for the next. Most people would think "how can it take that long, you pour it in the tube, it goes down...feed finished right?" NO, not so fast. Makily screamed EVERY time we fed her...well she screamed all the time back then but it was worse when she was eating. When you are bolus feeding a baby and they cry...it tenses their stomach muscles which then pushes the formula back up and into the syringe. This is very frustrating for baby and parent...especially at three am. I was up feeding Makily. I had just pumped my milk. She was in the swing because that was the only place she didnt scream 24/7. I had gotten all but about a tablespoon in her and she started screaming and pushed back out all of the milk. To say I was tired is an understatement. I started the swing up to calm her and she stopped crying. So imagine now I am holding the syringe above her while she is swinging in the swing trying to get her feed to go down. I got an ounce down her again and Makily started crying, flailed her arm and detached the tube from the syringe....so my milk poured out all over her and I. I got a towel and cleaned her up the best I could all the while she is crying. I went into the kitchen warmed some of my frozen breast milk and started the feed again. That feed went up and down and up and down the syringe two more times before I had THE NERVOUS BREAKDOWN.

I went crazy.

I took the syringe off Makily's tube and THREW it across the room. I started screaming and ranting "I can't do this, I tried but I AM NOT CUT OUT FOR THIS CRAP!!!!" Allen woke up (he was getting his ONE night of sleep, God Bless him). I told him I was DONE. I didnt ask to have a handicapped kid and I don't know how to be her mother, she doesnt like me. I can't feed her normally OR EVEN THROUGH A TUBE SURGICALLY PLACED IN HER STOMACH! I told Allen I could not handle the pressure anymore, God was laughing at me, at us. This was all a big joke to him and I hated God for doing this to us. Between pumping, being post partum, having and sick baby that cried all the time, no sleep, utter exhaustion and just out and out depression I had HAD IT. I told Allen that I knew he would not want to put Makily up for adoption but that I couldnt live like this anymore. I told him I was leaving. I seriously wanted to go live in a tent on the beach. I wanted to escape my life, anything was better than the hell we were living in...and that is TRULY what it was.....a SLICE OF HELL. (Andrea you described that perfectly)

Allen's response to my insane ranting literally took my breath away.

He didn't respond with anger, tears or even resentment. He said:

"Trish, I understand, and when you decide to come back....Makily and I will be right here waiting for you".

My heart soared and ached at the same time. The love he felt for me and for Makily was so strong that even though I had gone mad and we had this sick child he was going to do whatever it took to get ALL of us through it. Allen truly is the glue that held us together. I do not know what I would have done without him. The next day at the urging of my mother, Makily's pediatrician and Allen I got help. Things didnt get better for a while but I was able to cope with things so much better.

Today I look back and it's hard for me to believe that the happy blue eyed blonde hair little girl I see now is the same SCREAMING baby from back then. It wasnt until weeks and weeks later we found out that Makily's stomach was not working correctly which explained the constant crying. It's hard to know that she was so grumpy because she was in so much pain. Once all of the problems were fixed and she recovered her TRUE personality came out.

Her laugh STILL takes my breath away just like the first time.

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

Okay now we are REALLY close.

We had our home inspection with the Health Dept on Friday. It was pretty simple. He checked how hot our hot water gets, looked at our smoke alarms, counted the bedrooms, walked around outside and asked how many kids we have.

We passed but we need to get a lock case for our medications. Once that is done he will sign off that we are FINISHED with that. I think our licensing specialists (the one that did our home studies) has quit because I had a new lady call me last week and leave a message. She wants to come out and do another home study and meet us. I will give her the remaining paper work then and we are DONE!

I am hoping that we will be licensed by the end of this month. THANK GOD that will be done.

Of course being this close is making me terribly nervous. In a perfect world we will get a newborn as our first placement that we can adopt.....I know this is not realistic though. We are jumping into this blindly by faith knowing that whatever is supposed to happen WILL HAPPEN. God has shown us that time and time again and we really don't have much control anyway.

**I updated Makily's caringbridge page with pics and a new vid...check it out at:
MAKILY'S PAGE

Open Mouth...Insert Foot Moment

*feel free to post yours in the comments section*

When I was planning our wedding I took my niece (she was 17, I was 23) shopping for a dress to wear in the wedding.
I wanted her to wear something black and white (she was going to stand on Allen's side). Anyhoo she found this dress, BUT it was a DARK burgundy. I told her it was pretty BUT not black. She continued to insist is WAS black because she wanted the dress. Her and I jokingly argued over the color of the dress.

So ME being ME....I say "okay I am gonna settle this right now". I walk over to this man, he is sitting in a chair waiting for his wife that is trying on clothes. I thrust the dress in front of him and say "hello sir, can you PLEASE settle this for us...is the dress burgandy or black?"

HIS ANSWER?

"I am sorry ma'am, I don't know, I am blind"
I was so mortified I wanted to lay down and die right there! My neice IMMEDIATELY ran away and I said "I am sorry sir, have a nice night" and walked away with my head hung in shame.

open mouth.....insert foot.

How many kids have to die?

****This blog contains graphic picture, please view and read with caution*****


I have blogged in the past about the nightmare we experienced at Shands Children's at UF when Makily was three months old. I will give a short version of it here but to read the entire story go back to my blog entry here:
Narcotic Overdose
**Here is the short version:**

We were admitted for a leaking G tube and other gastrointestinal problems. Makily WAS NOT ILL, however she was in extreme pain. Her stoma looked like raw meat and was leaking CONSTANTLY. She screamed, writhed and cried for hours. The residents kept giving her morphine that gave her no relief. I asked them to try something else after dose number two did nothing. They gave her ANOTHER 2 doses (for a total of 4) before I refused to allow them to give her any more of a narcotic that was doing NOTHING for her. Finally after she had cried for many hours and had four doses of morphine in her they gave her Fentanyl, she went into respiratory distress and had to be put on a ventilator for three days. We almost lost her. We went in for a leaking G tube and 12 hours later she was on a vent?

This is what her G tube site looked like after three weeks there. This actually looks GOOD compared to what it had looked like. The redness had extended ALL THE WAY DOWN into her diaper area and the skin had sloffed off, it looked much like a chemical burn. The leaking never stopped. We left there with pneumonia, an NJ tube and a STILL LEAKING Mic-Key button. It was not until we went to APH in Orlando that it stopped leaking...and at that point it had to be removed altogether.



The problems continued during the month's stay at Shands. I could tell story after story of things that happened to us.

Last week this story was ran in our local paper.

Joey Schwartz age two was admitted to Shands for chemo. He was diagnosed with cancer at 10 weeks of age. During the chemo treatments he contracted a fungal infection. They amputated the child's leg and had to remove his palate and part of his sinuses to keep the fungus from spreading any further. His parents were informed that the chances of the fungus coming back are rather high and he has been sent home on Hospice. The mother complained about the "musty smell" and pointed out that there were quite a few molded ceiling tiles in his room. She was told it was nothing of concern. She has since found out that there were at least two more children with fungal infections there and they are under investigation now. to read the full story go here:
Shands Mold Problem

I saw the filth on the pediatric floor myself when Makily and I stayed there. The bathrooms were disgusting and the rooms weren't much better. Here are a few photos of one of the bathrooms.




So last week was the story on the fungus, then this week this story comes out:
Little Sebastian Ferrero was going to be tested to see why his growth rate was below normal. He was three years old and smaller than your average child. During the test he was given the amino acid Arginine. He was given more than TEN TIMES the dose he should have been given. Sebastian died two days later. To read the story and see photos go here: Sebastian's Story

Then I saw this report last night and I just can't believe it. Sebastian is NOT the first child to be given an overdose of Arginine. In August this child went in for the same test. He was given half the dose and began writhing and screaming on the floor. He was screaming "My brain is on fire". His mother insisted the test be stopped. She had the nurse unhook her child and they took him home. It wasn't until Sebastian died that this family was contacted and asked about how he was doing by Shands.
Click here to watch video: Overdose on Arginine

During the video there is a doctor that speaks He is the SAME ONE that diagnosed Makily's reflux and told us that it was severe enough that she could aspirate an entire feed in the night and drown in it....then he went on to say that if we didn't want to treat her reflux they would understand since she has Emanuel Syndrome, in his mind it was "okay" for us to let her esophagus BURN 24/7 and to possibly drown in her own vomit because she is a "genetics kid".

I do realize that everyone is human. Doctors put their pants on one leg at a time and they make mistakes. I personally believe that the majority of the problem at Shands is because they let the residents do WAY too much with not nearly enough supervision. I know that everyone has to learn but in some circumstances you should have someone checking and re-checking what is being done...ESPECIALLY WHEN DEALING WITH SOMETHING THAT IS LETHAL if given incorrectly like Arginine.

So our trip to Disney was ABSOLUTELY amazing.

I have not been that relaxed in FOUR YEARS. Makily was a DOLL and she had so much fun. She laughed, smiled giggled and had a big time! We spent most of our days at all the Disney parks and we also took some time our for swimming and lounging by the pool.

Nothing relaxes me like laying out in the sun with a Margarita in my hand.

We met up with the Stephanie (Maia's mommy w/Emanuel Syndrome)and family. We definitley had our moments of "wow's" but one in particular left me in tears. We had sat down to watch "Starship" play. I was sitting next to Stephanie when she reached out to hold Makily. I handed her over and Makily was ENTHRALLED with her. She just stared at Steph with the sweetest most angelic look as if she knew that Steph was a "special mommy". They laughed and giggled. It was way cute and SOOO touching. What REALLY struck me was watching Steph automatically do all the little things that Makily likes to get her to laugh. She knew what to do because she's been here before. I told Steph through my tears that when Makily was born and I found her c22 site that I NEVER could have imagined sharing a moment like that with her. Love you Steph.

I also wanted to say a special thanks to "Kim". I won't go into details but she is an amazing woman and her and I have chatted via email and over the phone...we have something rare in common. She found out about our Disney trip and sent us some gift cards to Disney. How kind and giving is that? Thank you so much Kim. I think of you and pray for you daily.

Foster care licensing is dragging on for what seems to be forever. I just got a call the other day from our agency wondering when we moved in our house. Apparently the people who lived here before us had 40 pages of incidences where the police were called here for domestic violence. She was VERY relieved when I told her we moved in 6 months after the last call was made. Our background checks otherwise came back clean. I have to call again tomorrow to find out when our home inspection is.

Buh bye Blue Lemon....Buh Bye.

After much thought, frustration and well no other choice we traded in THE BLUE LEMON and bought a new/used van.

Did we have the money? No not really. We had to pull it out of places I would rather not talk about. ;-) It basically came down to the fact that it was in the shop more than we had it, and WHO KNEW when that was going to end. Driving back and forth to Orlando with Makily was always nerve wracking. We couldn't keep throwing money into it with the hopes that "this will be it right"?

We got a GREAT deal on a 1999 Nissan Quest with only 58k miles on it. The people here in Ocala at Palm Kia were AWESOME. I of course haggled with them as much as I could and asked our salesman several times if he wanted to take Makily with him to negotiate prices with the manager. He laughed at me. Of course on EVERY PAPER I SIGNED I wrote "sale pending inspection by OUR MECHANIC". We took it in to Dave's and he was IMPRESSED. He went on and on about how he almost NEVER has Quest's brought in and the last one he saw recently had 180k miles on it and the alternator had gone out....big deal. He was floored with how low the miles are on it. So we FINALLY have a van that I don't have to manually drag the window up up while driving, or put water in every single time I drive it.

THANK YOU GOD!

Oh yeah and TWO MORE WEEKS TIL DISNEY!

wooo hooooo

Getting closer, feeling accomplished.

This is me today:

I finished driving school I had to take because of the ticket I got back in June. I did it online because I had no desire to go sit in a room for four hours on a Saturday.
I literally waited until the last minute to do it online. It just wasn't on my top priorities list. While doing that I was also typing up the eight pages of questions and answers for our foster care home study today. Can you believe it EIGHT PAGES! Most of the questions we had already answered in one other form or another on one of the several OTHER packets I had filled out. WHAT FUN.

The lady that did our home study was VERY nice and she was here for about an hour. She asked why I was on Effexor (it's an anti-depressant). I figured that eventually before our licensing was complete I would be asked this question. I was brutally honest. I told her that Makily's birth was terribly traumatic as well as the first year of her life. I explained that I suffered from SEVERE post partum depression as a result of that. I am still on the meds for a few reasons. The main reason being that when I skip a pill or forget one I can quickly see a difference in my mood and my patience level. I just don't see the point in stopping a medication that is obviously helping me deal with life. It does not numb me, I am fully functional and happier ON THE MEDS. Tom Cruise can REALLY BITE ME. When this interview was originally aired on TV I immediately lost all respect for him. (the respect was on it's way out the door already after his insane visit with Oprah and playing trampoline on her couches.)



I find it terribly pompous of him to claim that "exercise and vitamins" will cure post partum depression. I'm sorry Tom but when my daughter was in the middle of a seven hour crying spell and my life was falling apart around me, taking a jog and popping vitamin C was NOT going to help me. NO WAY, NO HOW! He is a spoiled, rich actor who has no idea what he is talking about. Come live my life Tommy Boy and then tell me more about PPD and antidepressants.

*STEPPING OFF OF SOAPBOX AND CONTINUING MY DAY*

She did a walk through of the house to make sure we had all the required smoke detectors and enough room for another child. We still need to have our medical forms filled out (my appt is Wed...oh joy), some copies made and our Health Inspection(waiting for them to call me with an appt on that)and then we are D-O-N-E! We will FINALLY be licensed. SO MANY HOOPS TO JUMP THROUGH!

Once that was done we went to the court house to prove I had taken driving school, picked up the BLUE LEMON from the shop and came home. So many things done and OUT OF THE WAY! LOVE IT!


I am getting so excited about our Disney trip next month. We are going in mid-October to see the St.Pierre family and to have a mini vacation/anniversary trip. Allen and I have been married for seven years as of 9-10 (last Monday). With so much going on we just didn't have time to celebrate it so we are making up for it next month!

The world's gone mad...or maybe it's just me!?

I was going to blog about this a while ago. I stopped myself because I felt like I would only add to the "chit chat" about all this. I am giving in today after I saw a video that at first made me laugh and then really annoyed me.

I think people have really forgotten what is truly important in life. Either that or reality TV and the Internet is totally just making it seem that way to me.

My first example. This video:


Now while I get the embarrassment of taking a bad picture THIS GIRL IS GOING OVER THE TOP. She is hysterical about a picture, that from what I can see is nice. I like the windblown look in her hair and she is a pretty girl. I won't lie, I can sometimes be vain but I cannot imagine going into all out hysterics, on national TV mind you over a picture. IT'S JUST A PICTURE...THE WORLD IS NOT OVER. It's not a photo of her in a bathing suit which while she probably would have looked fine in that too, I could understand more if it were. As women we are scrutinized by every little flaw and usually we are our own worst enemies. This is just of her face, and it's pretty.

Am I missing something here?

My next example is what prompted this blog today. I was on my way to drop Makily off at school and was listening to the radio. They were talking about this video on youtube and they even played the audio of it. I found myself hysterically laughing at just the audio on the radio. Surely this was a joke, no one is THIS much of a lunatic. Of course I had to find it as soon as I got home and I laughed while watching it then too.

****WARNING BAD LANGUAGE AND PROFANITIES USED IN THIS VIDEO*****


While the logical part of me realizes that this person is probably only half serious and that most likely he did such an extreme video to get attention (which unfortunately by blogging about it I am giving it to him). What concerns me is that there is a piece of him that is truly heartbroken by the fact that people are making fun of Britney. Britney is not a hero and has never been. She is just is a pop star, a human being that puts her pants on one leg at a time just like you and me....that's it.
For the record I do not like or dislike Britney, I think she is beautiful and those that are calling her fat are crazy and are also the reason there are so many teenage girls with eating disorders today.

This guy is so passionate about Britney Spears having people talk about her bad MTV VMA performance.

WHY NOT BE PASSIONATE ABOUT SOMETHING THAT MATTERS? Your hysterical over a pop star that you don't even know. In fact most of the population DOES NOT know her personally.

Which leads me to the next person I think is put on a pedestal...for reasons that I cannott
figure out.

Paris Hilton.

*sigh*

Much like with Britney I don't like or dislike Paris. I don't know her. I was APPALLED when I heard about this petition to keep her out of jail when she was caught driving drunk...NOT ONCE BUT TWICE! I realize this is old news but it goes along with my blog today. While a part of me can understand why some (teenagers) would put Britney Spears on a pedestal because she is a pop star, I DON'T get why they do this with Miss Hilton. WHAT HAS SHE DONE!? Her Daddy is Mr. Hilton. uhm...okay!? She says "That's hot" and somehow this makes her a person that should be excused when driving drunk...TWICE!? How can people really think this is acceptable!?
I wonder if she had killed someone if people would still be backing her up saying "keep her out of jail for her honest mistake". An honest mistake is putting on one black shoe and one navy shoe in the morning or forgetting your name tag on the way to work.

DRUNK DRIVING IS NOT AN HONEST MISTAKE!




Several months ago I was watching "The Next Pussycat Doll". (yes I love reality TV even though a lot of times it annoys me) Robin Antin was getting ready to cut one of the girls. She said something SO SERIOUSLY that I couldn't help but laugh at her.

Her words:

"This is one of the hardest things I have ever had to do in my life."

WHAT!?

One of the hardest things she has ever had to do IN HER ENTIRE LIFE was to choose The Next Pussycat Doll!?!?

ARE YOU KIDDING ME!?

All the energy that is being wasted by filing petitions and crying over pop stars could really be put to good use. I am sure not one of these people have stepped foot into a PICU or into a Children's Hospital. They have never walked a cancer unit and seen tiny bald headed children with tubes and wires hooked up to them everywhere. Chances are they have never seen a disabled child struggle just to eat or breathe.

To me THOSE ARE THE TRUE HERO'S. These children change lives....TRULY change lives. They are the innocent ones that God has sent here to change the world, not Britney, not Paris.

This is Maia.

Maia has a VERY SPECIAL place in my heart and ALWAYS will. Maia is the FIRST child (other than Makily) that I ever saw with Emanuel Syndrome. Her mommy Stephanie and I have become VERY good friends. Maia has many of the same problems Makily has. BECAUSE of Maia, Stephanie started a support group for parents of children with chromosome 22 disorders. When the doctors told Stephanie there was no one else she refused to accept that. She searched, scoured and was determined to find others. She did. Now there are over 160 families that can come online and know that we are not alone. That there IS SOMEONE else out there. When I first had Makily and they told me there was no one else, Maia was my shred of hope when I had none. This picture of Maia brings back so many memories for me because it is the exact picture of her I saw when I first found Stephanie. Maia is one of my hero's.


This is Luke

The Story of Baby Luke

This is Luke, he has CMS (congenital myasthenic syndrome). His parents went 18 months without knowing what was wrong with their baby. Luke suffers from respiratory issues, feeding problems and low muscle tone. He spent a long time in the NICU. Thankfully since being diagnosed little Luke is getting treatment and he is doing AMAZING. He will need medicine all of his life and has to work twice as hard maybe harder to do the simplest of things. He does it though because he is strong and determined. Don't feel sorry for Luke, LEARN FROM HIM, be thankful that you and your children can walk, talk and breathe easily. Cherish every milestone.
He is one of my Hero's too.

Of course Makily...my sweet Makily.

How she has saved me time and time again from myself. She has taught me so much in just three years. She is the happiest child I know, she loves without condition and laughs without holding back. I could go on and on about the lives she has touched and changed. Many lives I am sure I don't even know about. Makily has been someone else's glimmer of hope more times that I can count and I continually am amazed by her.

SHE IS MY ULTIMATE HERO.


I will most likely be adding more of the "Hero's" in my life here. I guess since I had Makily I see the world so TERRIBLY different than I did before. I wish that everyone could see these kids the way I do now. I hope in some way I have shred at least a little light on who the true "Hero's" of this world are.


**Disclaimer: I recognize that I look at things differently than most because of the life I live. I am in no way trying to be judgmental here, and deep down I *believe* that I am not the only one that things some of the things I am ranting about are INSANELY PETTY!

Lost in a life jacket.

We have been taking Makily to Wild Waters almost every weekend the last month or so. SHE LOVES IT. The child is a water baby if I ever saw one.

A few weekends ago out of no where they were making it mandatory for ALL kids under a certain height to wear a life vest whether they were with their parents or not. When they told us this rule I was a little annoyed. Makily only has so much strength as it is and putting a life jacket on her was going to make it even more awkward for her. I did it anyway hoping she would get used to it. Well after about 10 minutes in their pool area I realized, she wasn't going for it. It also didn't help that they had no infant sized vests available and we had her in a size that really was too big for her.

So we got out of that pool and went over to the wave pool. It has a zero entry area and we like to sit at the "shoreline" of it with her. Well we get there and they are enforcing the life jacket rule there too.

I almost wanted to cry.

Playing in the water and swimming is one of the very few things Makily ENJOYS doing. She laughs and giggles and is really at peace in the water. Due to all her medical problems and hypotonia she can't just play like a typical child, her body just doesn't work that way. All you special needs parents out there know that when you find something that your kid likes and responds well to, it's AMAZING! I found myself getting sad that we had finally found something that made her sooo happy and now because of their new rule Makily couldn't enjoy herself. I wanted to leave right then and there because I felt like the entire day was ruined. Then I thought "heck no, they are going to make an exception for this kid, SHE DESERVES IT!"

I went up to the lifeguard (who was all of like 16) and said "My child cannot walk, crawl or get away from me, she hates the life jacket and I won't put it back on her, if I promise to sit at the edge here can I please take her in". She told me that I couldn't. It was their new policy. I asked her what I should do then and explained that Makily WAS disabled and she could barely move in the jackets they provided us. She reiterated that SHE HAD TO WEAR it BUT that she could get the manager for me to speak to.

I could feel my inner voice slowly whispering in my ear. The voice that comes from the darkest most negative parts of my brain. It's that voice that speaks to me when something like this is happening, trying to convince me to be sad. I fight these thoughts more times than I like to admit. This time the voice was saying:

"If Makily wasn't disabled you wouldn't have to be fighting about this, she would be running and splashing around right now, why do you even try?"

I quickly refused to listen to this little voice in my head and was determined to have a good day and be positive.

The manager came and I explained our story once again for him. I used lots of BIG MEDICAL WORDS so as to make myself sound smarter than I really am in the hopes that this would somehow intimidate him. Ha Ha. I told him Makily couldn't walk or crawl and had hypotonia which made it almost impossible for her to move with this huge jacket on that went all the way past her ears. Seriously all you could see was her big cheeks all squished up and two little piggy tails sticking out the top of this thing. He was very nice and explained that A DIFFERENT water park in CA had 9 drownings this season and so they had initiated this rule in Ocala (don't ask me why). I told him I understood but it didn't work for us. He agreed and said that since our case was "extreme" he would let us take her in without it, as long as I held onto the life jacket.

I was elated!

So Makily, Allen and I sat at the edge of the water playing "splishy splash". She laughed and giggled, I kept the toddler life jacket hooked around my arm.

It's amazing the things I will do and complain about now for this kid.

**Disclaimer: I do not have schizophrenia and I don't actually hear voices.**

The Blue Lemon.

That is the name we have not so lovingly dubbed the van.

If you remember from our SKYLINE MOTOR WORKS LLC aka McCoy Auto Sales of Orlando Sold us a Lemon entry the van was still having problems even after we had paid over $300 to repair it. At the end of that entry I have a video of what it was doing. Well come to find out the radiator had a hole in it. Yes that's right. Which is why when every time we got out of it it would leak water and steam everywhere.

NICE.

It's a the shop now. It needs a new radiator.

LOVELY.

At least another $350+.

BEAUTIFUL.

I have not heard one peep from the people that sold it to us. Not a response from the emails, letters or phone calls and I don't expect to either. I don't expect to either.

ENOUGH ABOUT THEM.....

We are still in the process of getting our foster parent license. We have a home study set up in two weeks. I believe this will be the last home study. After that all that is left is our doctors appts (which are scheduled for this month) and our health dept inspection. I can't believe we are this close! How exciting!!!