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

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

It's just INCREDIBLY frustrating.

Patience Lord...I know patience right!?

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

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


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

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

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

I was ecstatic.

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

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

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

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

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

or so I thought.

*sigh*

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

HIM: We can't use these

ME: WHAT? WHY NOT!?

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

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

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

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

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

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

Gee that made me feel better.

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

**Of course**

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

Lovely.

I also found THIS SITE
that says and I quote:

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


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

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

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

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

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

I agree and I pray they are right.

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

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

I keep telling the troll to shut the heck up.

Will keep you updated.

My family, we are a loud, obnoxious bunch.

Yes that's right, we are loud.

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

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

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

I think I am tone deaf maybe?

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

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

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

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

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

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

HER: Didnt ENT and Pulmonology talk to you?

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

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

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

HER: Well the ENT ordered it.

ME: What about the pulmonologist?

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

ME: Well I am not comfortable with it.

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

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

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

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

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

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

HER: Yes I am

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

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

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

HER: Oh I have done HUNDREDS.

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

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

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

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

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

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

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

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

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

I guess being loud can be a good thing sometimes.

Things not to say to a special needs parent.

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


Things NOT to say to a special needs parent and child


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

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

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

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

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

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

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

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

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


Good ways to approach a SN child and their parent


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

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

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

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

Dear Foster Baby...

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

I know you will be afraid when we meet.

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

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

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

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

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

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

Love
Your soon to be Foster Mommy :-)

Shopping in yellow.

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

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


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

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

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

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

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

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

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

We really are close.

It's starting to feel real.

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

....what do you do now?

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

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

I am NOT A DOCTOR OR A NURSE.

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

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



Emotionally

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

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

You have a lot of other stress in your life.

You have a sick or colicky baby.

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

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

Who are all these doctors?

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

Your baby is very rare and very special!

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

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

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

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

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

PT, OT, SLP

WHAT THE HECK DOES ALL THAT MEAN!?

Physical therapy, occupational therapy and speech therapy.

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

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

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

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

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

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

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

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

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

*Cooing at four months and giggled

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

*Big grins and belly laughs at six months

*Sat by herself in a bumbo seat at 9 months

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

* First tooth 18 months

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

*Sitting independently indefinitly 24 months.

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

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

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

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

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

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

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.