HAPPY HALLOWEEN!

**Sweet Reese sadly passed away yesterday Thursday October 30, 2008.**

It was her first birthday.

Reesie short life was plagued with many surgeries, pokes and more pain than any one person should have to endure. I am in awe of the strength of such a tiny child, and the ability to touch many hearts and lives in such a short amount of time.

Goodbye sweet Reese, we love you and will miss you.




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Thought I would post some pics of our porch and pumpkins we did last night.

Allen is like a 10 year old boy with Halloween, he was SO excited to do the Pumpkins. The porch decorations were a "surprise". He planned it all himself!

Our Pumpkins before we got started.


The Master Carver himself



My pumpkins.

The one on the left is supposed to be a tombstone that reads "RIP".
It doesn't look so hot though!


Allen's awesome pumpkins...he actually won a carving contest one year.




The front porch

*the shirt on the skeleton says "You laugh because I'm different, I laugh because I just farted"....only my husband eh?*

Makily hanging out with the skeleton


Sorry none of J this time. I forgot to try and get a shot of him from behind.

I stink!

Costume pics of the kids tomorrow.

Makily is "SuperGirl" and Little J is "SuperMan". Cute huh?
We are going to our church for their fall festival with the whole family. It should be SO fun.

*Pray for Makily, she has had a runny nose for about two weeks now and they sent her home from school yesterday since her cough was starting to sound pretty nasty. She was fine this morning and I didn't want her to miss out on the festivities so we sent her with her costume. The kid deserves to have fun and experience EVERYTHING! I am praying that the "snot" clears up and we don't end up with something more serious.*

Fall Makily Pictures.

Today has been a great day.

My friend Chontee and I took Makily today to do pictures at the Pumpkin Patch.

I wanted Makily's hair to look perfect and Chontee had encouraged me to let her wear it down which I don't do too often.

Makily got out today at noon. I brought her home and gave her a bath. I knew I would have to blow dry her hair if I wanted to be on time. I was not looking forward to doing her hair at all because she usually screams bloody murder.

I brushed her wet hair out (I put Spongebob on first) and started to blow dry her hair. I have never done this before. I was waiting for the tantrum to start when I realized Makily was smiling. She kept looking at me and clapping her hands.....and then smiling.

I started to cry.

I sound crazy I know.

It hit me what a normal thing I was doing with my daughter.

A normal thing...that we were both enjoying.

I had a normal mother daughter moment.

As I blew it dry I kept thinking how beautiful her hair is. I swear it's like spun gold.

I'm not just saying that either.

She was so sweet while I did her hair.

I curled it with a curling iron and she cooperated for that too.

When I was done, I cried some more.

I just can't get over how beautiful she is.

I know she is mine and so I am partial but I really have a pretty kid.

Here are the pictures from the day. It was a good one (tiring but good).

Perfection

Happy Girl


Touched by an Angel

Fun with Mommy

Me and My Girl

Telling me stories...

Stop with all the kisses!!!

I love her


Me and my Doodle.


**btw those of you wondering where are the pumpkins are.....well I am wondering the same thing! Chontee got to the Pumpkin Patch and they were CLOSED! No pumpkins anywhere! We both thought they were opened until the day after Halloween but I guess we were wrong! We got some good ones anyway.

**Her outfit WHICH IS TO DIE FOR I ordered from a lady on EBAY.
Here is a link to her store.

Little MiMi's Boutique

***THANKS AGAIN Chontee for taking these pictures.
They turned out beautiful and I am so grateful to have them.
I will cherish them always!***

Changes, Decisions and Closing Chapters.

Me and Doodles Yesterday at the Scarecrow Festival.
(excuse my messy hair...my blow dryer died and so this was the result!)


I had mentioned in my last post that I started a Freelance position with our local newspaper. I have been hired as the lead moderator for the Ocala.com Mommy forum. It is a job I can do from home and so that is a HUGE plus. I have tons of experience as I have been a moderator on the "fertility/mommy" site that I have been a member of since 2002.

So if you are an Ocala mom PLEASE join the forum and get involved. That web addy is

www.ocalamom.com

Pretty easy to remember eh?

They have a pic of me and Doodles up on the home page which is VERY COOL and a little embarrassing at the same time! We plan on doing contests and get togethers with the members once the board really gets hopping. I think it's a great way for local moms to connect so PLEASE join and participate guys!

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

I thought I would update on my weight loss. I am now down 18.4 lbs. I actually was a bit annoyed that I have not lost more until we measured this time.

I HAVE LOST A TOTAL OF 19 INCHES!!!

I knew I was getting smaller because my pants are seriously starting to get WAY too big. I am talking they are falling off of me. I didn't understand why my weight wasn't just dramatically dropping with the way my clothes are fitting ya know? In the last month I lost 8 inches.....half of which off my stomach so that explains why my pants are falling down. Kathy (my diet counselor) says she thinks I am gaining muscle and that is why I am seeing more of an "inch loss" rather then seeing the numbers are the scale go down drastically. I have been HORRIBLE about pushing myself to be "done" by a certain date. I finally am going to stop timing myself with this and just "be". I will loose the weight in the rate my body wants to and if that means I am only loosing 1-2 lbs a week then so be it. I keep thinking back to when I was in my early 20's and how I EASILY dropped at least 3 lbs a week. I have to realize I ain't 20 anymore and so it's just gonna take as long as it takes.

sigh

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

I had a consultation with my new OBGYN last week. It's never a "fun" experience going to the "crotch" doctor but I had to go. He was super nice (Dr. Johnson for those Ocala gals btw he is NOT the dr that delivered Makily) and we talked about tying my tubes. Ugh. He totally understood our position and why I want it done. He didn't try to talk me out of it at all which shocked me a little at first. Then when I thought about it I realized that as an outsider looking in, our life isn't "normal" by any means.

Allen and I have discussed and discussed it. He is not sure if he wants me to do it or not. Deep down I DO want to do it but when I was talking it over with my mom I just started crying. It's the closing of a chapter that I never planned on closing this early and after only one biological child. Having J though has taught me that "biology" really is not what makes a child YOUR child. Even still the thought of never being able to feel another baby grow in my belly, kicking and squirming breaks my heart. Knowing I will never breastfeed, see another u/s, name another child etc is very sad especially for a person who when she grew up wanted nothing more than to be a "mom".

I don't want to chance accidentally getting pregnant EVER because I just don't have the guts to face the decisions I would have to face if it happened. The thought of that nauseates me. Those that have done it, I commend you, I am just not that brave. On the other hand I am totally happy with Makily and with "Little J". We will probably continue fostering even if we get to adopt J so it's not like we won't ever have more little ones running around if we wanted.

I am still so conflicted on this. I think the main reason I am having such a rough time just making a decision is that I don't want to regret it. What if five years from now I want to try? I don't think I will, but what if I do? I can't take it back then. On the other hand five years from now I will be 36, Allen will be 46 and so do I want to try that late and risk even more chances of not only having a child with Makily's condition but one with ANOTHER genetic problem because my eggs are older?

I have another consultation planned for the end of November. Will update on this later on down the road. Pray for God's will in this. Pray for peace in my heart about it. I do believe even if I decide to go through with it, it's going to be emotionally trying, so pray that I will be able to handle it with grace.


Enjoy all these pics from our day yesterday. It was awesome!






Makily had an ALL OUT tantrum when we went to eat. We always take one of her favorite toys when we go to a restaurant. We figure hey she can't eat might as well let her play. We had her in the high chair and she was having a BIG time playing with her toy when WHAM.....she slammed it RIGHT into her face.....HARD. She FREAKED and screamed for AT LEAST 10 minutes. She was PISSED! I held her, rocked her and it just would not work. She would start to calm down and then look at the toy and start right back up again. We finally moved her over to Daddy's side of the table and well as you can see, he cheered her right up.

She's SUCH a Daddy's girl....I'm a smidge jealous.

Pumpkin Patch

We took J to the Pumpkin Patch last week. My sister Elizabeth went with me along with my friend Chontee and her two babies. IT WAS SO HOT! Makily was at school. I have ordered her an outfit to do her pics in and when it comes we are going to do her pics there. I think we are going to try and go earlier in the day so it's not so dang hot. Makily does NOT like the heat AT ALL. J dealt with it for about 30 minutes before he had a melt down.

I think because of the time of day the pictures I took did not turn out so hot. My friend Chontee on the other hand WOW hers turned out awesome. Her camera ROCKS and I am so jealous. My camera has a delay from hell and seriously I will snap the picture and it takes 10 minutes before it actually shoots. ANNOYING! She took some amazing pics of J but unfortunately the only one I can post is the one you see above. I love it even though you can't see his sweet face.

Sorry I have been slacking with my blog this week. I started a freelance job for the newspaper and I am getting things in order for that. More on that in a later post.

Our Story.

I got this idea from CONFESSIONS OF A CF HUSBAND. If you haven't visited their blog, I highly suggest it. Their family is such an inspiration. They have been through many trials, life and death situations and in the end they always pull through with amazing faith. It's yet another blog where they are brutally honest and I like that about them.

This entry will be a "reader's digest" version of our story up til now. It is intended for new reader's who come to my blog and don't know our whole story. I have gotten a few negative "anonymous" comments lately and I feel like part of that is because people are coming here and not fully understanding where we are and where we have been. . Let's face it, to go back and read all my entries would take FOREVER and who has time for that?

I will update this as time goes on.

Without further ado:

Our Story

My husband Allen and I got married September 10, 2000. Allen put me through school to get my Medical Assisting Certification in the first year of our marriage. I graduated and immediately began working in Dr. Pierre's office. She is a pediatrician and now considered a part of our family.

In May of 2002 Allen and I began trying to conceive. I was taking my temperature every morning, tracking my ovulation and using ovulation predictor kits every month. Six months went by and I was still not pregnant. Deep down I knew something was not right and was becoming frustrated.

I went to my OBGYN who did some preliminary testing. I was told that my progesterone level was low and that if I did get pregnant I would likely miscarry early on, possibly so early on I wouldn't even know I was pregnant. I was prescribed Clomid to enhance ovulation and give my progesterone level a boost.

I took Clomid for two months and I had MASSIVE abdominal cramping during ovulation both months. An ultrasound revealed I had several eggs maturing and there was fluid in my abdominal cavity......a sign of ruptured follicular cysts. I had ovarian hyperstimulation from the Clomid (my ovaries reacted strongly to the medication and it caused me to produce MORE eggs that were likely not mature enough to fertilize). My OBGYN told me to stop taking it and referred me to a Fertility Specialist.

The Fertility doctor examined me and said that my progesterone level was NOT low and that we should just keep trying. I was very upset as I had taken Clomid for two months that I did not need. This explained the hyperstimulation from it as my hormones had been fine after all.

I changed OBGYN's and he ordered a Hysterosalpingogram. This is a test to make sure your uterus and fallopian tubes are open and normally formed. It was painful but the results were normal. In June 2003 my doctor did a Laparoscopy to evaluate me for possible Endometriosis. He found that my reproductive organs were "pristine" (his words not mine!). I had one tiny adhesion on my left ovary which he easily removed.

In Early July of 2003 I contacted the fertility doctor again. I set up an appointment for August for genetic testing on Allen and I. This was really the only test we had not done and the Fertility Doctor required it before moving on with any assisted reproductive procedures. Once that came back normal we planned on having an IUI late in late August.

Well as always God's plan was different than ours.

On July 25, 2003 (Allen's birthday) we found out I was FINALLY pregnant with Makily.

WE WERE ELATED.

There was no need for the genetic testing so I canceled the appointment with the Fertility Specialist.

It just took us longer to get pregnant was all...or so I thought.

We found out we were having a girl and I was THRILLED. We painted her room pink and I bought TONS of dresses. All of my ultrasounds were normal. No problems were seen and we were planning on having a "six or seven pound healthy girl". At 28 weeks I asked the midwife when I would have the triple screen to look for genetic abnormalities with the baby. She looked perplexed and said "Didn't Dr. X order it"? I told her he had not and I was not sure when it was to be done as this was my first pregnancy. She explained that at 28 weeks I was too far along to do the test. She said the results would be inconclusive. I was young and had nothing to worry about she told me. She said the chances of my having a baby with a genetic problem at my age were very slim.

So I didn't worry.

Makily was born three days before her due date. My labor lasted for 48 hours. The morning of the second day I was admitted to the hospital and they broke my water. They discovered that Makily had a bowel movement and we were told it was nothing to be overly concerned about. The nurse said she would just need to be suctioned extra at birth. We were very uneasy about this and so we called Dr. Pierre. She said she would attend the birth and to call when I got to the pushing stage, which we did. I vaguely remember seeing her walk in while I was pushing Makily out.

Makily was born at 8:07 pm on April 1, 2004.

She weighed 5 lbs 10 oz and was 19 inches long.

She was also in severe respiratory distress and limp as a rag doll.

I thank God to this day that Dr. Pierre attended her birth. I do not think she would have lived otherwise.

Minutes after Makily's birth I noticed some extra skin on her cheek. It looked much like a flesh colored mole. We were told it was a "skin tag" and that she had a few more along with a cleft palate.

I knew at that moment something was terribly wrong.

Makily was transferred to a level III NICU 30 miles away within an hour or two of her birth. She had severe pulmonary hypertension secondary to meconium aspiration.

Genetic testing was immediately done due to the skin tags and cleft palate.

She was sedated and on a ventilator the first eight days of her life. We could not even touch her during this time. Her heart would RACE and her oxygen levels would plummet. She could not handle ANY type of stimluation or stress. One day we came in and they had draped a cloth over Makily's eyes and taped cotton balls in her ears. Even in a drug induced coma the sounds of other's babies crying and the beeps of the machines was too much for her brain to handle. I remember thinking that must mean something but I didnt know what.



When she was six days old Makily was diagnosed with Partial Trisomy 11,22 which is now more commonly known as Emanuel Syndrome.

The world stood still as the doctors explained that Makily would be severely mentally and physically retarded. The picture that they painted was that Makily would likely be much like a "vegetable". We were not given much hope of Makily having any kind of quality of life.



I wanted to die. All the dreams I had made for Makily disappeared in that moment. I can't describe the emotional pain of that. I would not wish that on anyone. I felt like my heart had been ripped out of my chest. I would never laugh or smile again. My life was over. How was I going to go on like this? How could I stand by watching my child suffer knowing there was nothing I could do to help her.

A week later a blood test on my husband and I showed that I am a carrier of the 11,22 balanced translocation which caused Makily to have Emanuel Syndrome. All along our reproductive problem was due to my genetic flaw. Typically babies with Emanuel Syndrome are miscarried very early on. Like my original doctor had said I would have miscarried before the embryo would have even implanted......before I would have even known I was pregnant....my hormones had nothing to do with it though.

What I find extremely ironic is that had I not gotten pregnant in July, we would have had the genetic testing THE VERY NEXT MONTH that would had found my translocation. Just a few more weeks and we would have likely decided not to try to get pregnant naturally any more.

Makily was definitely meant to be here.

Makily stayed in the NICU for a month. She had a g tube placed at three weeks of age as she did not have the coordination or strength to suck enough to gain weight. The cleft palate coupled with Pierre Robin Sequence also made oral feeding even more difficult.

Once we brought her home Makily screamed and cried the entire time she was awake.

Nothing soothed her.

We tried EVERYTHING.

Dr. Pierre switched her formula to Alimentum. We assumed at this point she had horrible colic.

At six weeks of age an upper GI revealed she had MASSIVE reflux and trace aspiration when oral feeding. The reflux was surprising since a Ph probe had been done the day before the G tube was placed and it was NEGATIVE. We were told to stop orally feeding Makily as she was at high risk for aspiration pneumonia.



Medications were tried to control the reflux to no avail. Makily continued to be extremely fussy and inconsolable during this time. Allen and I were incredibly sleep deprived and on top of that I was dealing with Post Partum Depression. I had an incredibly hard time adjusting to "Our New Normal". It was not the life I had planned for our family and I was deeply mourning that loss. This was not the happy, normal life I thought it would be.

Finally when Makily was three months old the doctor decided to do a Nissen Fundoplication to stop her reflux. The day before the surgery she had a gastric emptying study to make sure her stomach was emptying properly. It wasn't. Her stomach emptied VERY slowly, it took more than five hours to empty two ounces. Normal for a newborn was 30 minutes. We fed her every two hours during that time and so she was still full from the previous feed. No wonder she screamed constantly. They also decided to do a Pyloroplasty help her stomach empty more efficiently. She spent two weeks in the PICU. While she recovered well from this she had some respiratory scares the first night out of surgery.






We were in and out of the hospital much of the first year of Makily's life. Typically for g tube malfunction problems or pneumonia. At one point she was overdosed on narcotics by an inexperienced resident doctor.





She almost died that night and this was not the first or last time we have almost lost her.

Makily had a Grand Mal Seizure in the middle of the night June of 2006. She had been on seizure medications ever since. To this day we do not know why she had that seizure and none before then. The doctors believe she is at higher risk for seizure due to a few brain malformations she has. In July of 2007 she had a heart catheterization to repair several holes in her heart. She recovered very quickly from this and has done well ever since.

Make video montages at www.OneTrueMedia.com

Makily began Pre-K last year at age three and is doing VERY well. She is a happy little girl whom I have watched claw her way back from the brink of death. She truly is the STRONGEST person I have ever known. Her smile will light up a room and her laugh is known to make an entire room go silent just so everyone can hear it.

She has pure joy.

Makily is able to sit and and stand up. She can't talk but she knows how to get what she wants. We have started using a PECS board for communication and she does well with that. We pray that one day she will walk. She is 100% G tube fed although we do give her tastes of things and try to get her to eat. It's an uphill battle.

When Makily turned three Allen and I decided we would foster to adopt. Due to my genetic problem we are at risk of having multiple miscarriages or another child with Emanuel Syndrome. Adopting was too expensive ($20K) for us as we know Makily is going to require life long care, we worried about having a loan for an adoption looming over our heads. IVF was also out of our reach financially. It is also not perfected for people with genetic conditions like mine and so the success rate is pretty low. We couldn't see spending that amount of money on something that was more likely to fail than not.

We began the process to get our foster parenting license in April of 2007. Due to issues with staffing at our agency it took a year for us to get licensed. WE received our foster license in the mail in April of 2008. Our first placement call was on May 2, 2008. It was for a four month old baby boy that for blog purposes we call "Little J".



It wasn't long after "Little J" came to live with us that we decided if it was possible we wanted to adopt him. We love him like he is our own. Fostering to adopt is not without many unknowns and his "case" has been up and down many times. At the time of this writing "Little J" has been with us for nearly six months. Things are very much in our favor for now but we realize that can change at any moment. However this turns out though we just want what is best for Little J. To know that he is safe and loved no matter where that is, although we pray it is with us.


We have had one other placement since we became licensed. "Snuggles" stayed with us for five days until they could find a more permanent place for him.


Right now we are only licensed for "one child age 0-2" but we are willing to take other little ones for respite or longer once "Little J" is older.


So that's Our Story up to now.

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Big Decisions.

So I have really just been walking on air since finding out that SleepSafe was GIVING Makily a bed. Every time I think about it I am just amazed.

The next day I got a card in the mail from a nice lady at our agency. She thanked me for taking the time to care about Little J and his well being. I was floored. There are details behind this I can't share but let's just say it made me feel EVEN better about things.

That being said tomorrow is another BIG DECISION day when it comes to Little J and his future. There is a "staffing". Basically it's a meeting where all parties involved talk about where the case is going and what should be done. This is supposedly "The Big One". J's case should be (and I say that loosely) coming to a close in the next several weeks and this staffing is "supposedly" the one that is going to decide what will happen at the final court hearing. Honestly though it wouldn't surprise me if I am walking out of the meeting scratching my head going "hmm that was a waste of time".

I waffled back and forth on whether or not I was going. I had my own fears and reasons for not going and up until this morning was pretty sure I was not attending. Trust me those reasons and fears are very valid. Well I can't stand it, I have to go. Those that know me know I will be going crazy if I am not there. I plan on going and sitting quietly unless I am asked a question. Last time I was only asked one or two questions and I kept it short, sweet and to the point.

Unfortunately much like my sister Deborah has explained before in HER BLOG, I inherited the same NERVOUS stomach she has. Basically any time I or she is dealing a HIGH stress situation, we have what we now call a "Poo Poo Bonanza" or "Poo Poo Fest 2008".
(I've gone too far on my blog again haven't I?)


By the way this lady is totally faking a "Poo Poo Bonanza" attack.
Her face is not pale enough and she is missing the sweat pouring down her face.
She also does not have that look of terror either.

Pray that I at least make it through the meeting without "Poo Poo Fest 2008" commencing. Fun thing to pray for eh....no poop right?

God must really think I have lost my mind at this point.

But Seriously.......

......pray that tomorrow brings our family one step closer to knowing the future of Little J. Pray that whatever the outcome is that we will all handle it with love, grace and strength.

Most of all pray for the safety and future of our Little J.

Doodles showing off her skills.

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

CLICK HERE TO READ ALL ABOUT THAT!


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

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

I love this child. She's amazing.


ENJOY!

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Holy Guacamole.....Prayers have been answered.

Makily is being GIVEN a custom made for her, brand spanking new:

SLEEP SAFE BED

Remember now, this is the bed I have fought and begged for since February.

How did this happen you ask?

No it's not the insurance company, they still have not budged.

I am still so floored by this I don't even think it has completely sunk in.

As many people know I have been a member of a infertility/parenting board since 2001/2002. These women have walked the last four years with our family. They have been a huge source of support for us. When Makily was born I can't count how many boxes of preemie clothes and diapers these ladies sent to us. When she has been on death's door they have rallied together and sent care packages of gift cards, candy, movies.....things to help me keep myself sane.

I was very depressed when the Insurance company told me that Makily's bed was denied again. I sat on the floor crying and really just wanting to throw my hands up.....and give up. I had posted on the parenting board about how defeated I felt. That I was tired, I had tried everything, I had called everyone on the planet for help with no solution.

Unfortunately though, I can't give up, it's for Makily and so I have to continue fighting for her because SHE DESERVES and needs these things.

One of the owner's of the board and a close friend of mine Dj Aguilar was infuriated with all we have been through to get a bed for Makily.

She and all the other ladies on the board were racking their brains trying to figure out a solution for me....they could all tell that I was SPENT.

My friend Dj
(she's so going to kill me but is she hot or what?)


Dj sent a very touching heartfelt email (which by the way I had a hard time reading it through my tears) yesterday to the owners of Sleep Safe Beds. She basically detailed our story and how we have had to fight for ANY assistance and even then we are sometimes left with no help. That we have tried to get EVERY state funded insurance as a backup and were denied based on income OR because we have private insurance.

Dj received an email back this morning telling her that one of the owner's and his wife had been following my blog for quite a while now. They knew who Makily was and wanted to know what specifications we would need in a bed for her......then they said they wanted to GIVE Makily a bed.

That's right G-I-V-E!

They told Dj to have me call and just let them know what I needed down to the color of the bed and they would take care of it.

There are NO WORDS to describe the weight that lifted from my shoulders at that moment. I was blinded by happy tears.

I called them this afternoon and spoke with a sweet lady named Casey. We went over what all we needed and Makily should have her bed by Christmas. What a Christmas gift this will be! There were many upgrades and features that she willingly added for Makily. Without a second thought, whatever my baby needed they were giving it to her. They are even giving her a full size bed instead of a twin. It will grow with Makily and she will be able to use it for quite some time....I'll also be able to snuggle in with her!



All those months of crying, faxing, begging, writing letters and being denied were fixed in one email and one phone call.

I am speechless.

How do you thank someone for thinking enough of you to write a letter that sparks ANOTHER person to so generously hand over a piece of medical equipment that costs THOUSANDS and THOUSANDS of dollars?

I told Dj on the phone today that I don't feel worthy.

Saying Thank You just seems incredibly lame under circumstances like these.

I told Casey at Sleep Safe thank you so many times I think she probably thought I had lost my mind. I was rambling on and on, I just am floored at the amount of generosity being shown to my little girl.

To the owner's of Sleep Safe Beds, Joe Hallock and CEO Gregg Weinschreider I thank you from the bottom of my heart. That just does not seem like enough. I wish I could come there and hug both of you so tight. You are proof that there are still amazing people left in this crazy world. This has been such a source of stress for me for such a long time now and I really did not see an end in site. The last several weeks I would go into wake Makily up in the morning for school and immediately get angry. She would be in horrible positions in a toddler bed that was too small for her, that had a mattress that is made for an infant. Not being able to provide your child with something like A BED that you know they desperately need is incredibly heart breaking and upsetting.

You lifted that weight off my shoulders.

You ended that stress for me and I am so incredibly grateful.

THANK YOU, THANK YOU, THANK YOU!




***I have had a couple of people ask me for the email address for Sleep Safe Beds so they can offer their thanks for what they have done for our family.***


Here is their email address:

sleepsafebed@sleepsafebed.com

An entry full of negativity..with a little positive..hooray!

I fell off the Jenny Craig wagon this week. I don't just mean I fell off the wagon, I jumped off and bounced a few times.

Weigh in tomorrow will not be fun.

Dusting myself off and jumping back on the wagon though.

SIGH

My sister had a HORRIBLY sad weekend at work. She and I went walking Saturday morning after she had gotten off work. She told me about her awful night and we were both in tears through most of our walk. I am sure the other walkers thought we were insane. She works in the Nursery and NICU.....nuff said.

Allen left for work this morning and J has been in rare form all day because of it.

We are almost capped out of our insurance therapy monies for the year so we have now cut down to just private speech therapy. She gets PT and OT at school but she needs the private therapies too so the fact that we still have NO BACKUP insurance is really making me insane. HealthyKids/MediKids denied Makily based on the fact that she already had Private Insurance. Lovely. I am starting to just accept the fact there is NO help for us. Unless Allen and I legally separate or divorce OR unless we give legal custody of Makily to someone else.....there is not help for us. I just can't bring myself to do either of those things. I have called and emailed Senators, Governers and State Reps with no help. I need to talk to an attorney but I doubt even they could do anything for us.

We were denied AGAIN on Makily's sleep safe bed. I am so frustrated with that whole process I don't even know what to do. The letters from the pedi and myself were awesome and there is really no reason they should NOT buy the bed. The denial just said "item not a covered DME item". The bed they want her to have is a death trap for a million reasons all of which were explained in the appeal letter. I guess they don't really give a damn if Makily gets sandwiched in the metal railing and or suffocates. They don't care if she entangles herself in all her wiring and tubing in the rails. What's worse is they are not giving me any other alternative of what other bed they WILL pay for that she won't possibly strangle herself in. I am willing to look at other beds as long as it's something safe.

I called the insurance commissioner of Florida, explained the entire story, they told me to call the commissioner of Alabama (our insurance is BCBS of AL). I call the commissioner of AL and they tell me that I need to call Florida. I am not even kidding. I wish I was. I really am tired of all this crap. I ended up calling the insurance lady at Allen's work and she is going to see what she can do.

I'll appeal it one more time I guess.

On a bright note Makily is FINALLY getting casted for her AFO's at school tomorrow. I have called and called and their staffing issues are finally resolved.

Things are looking BACK in our favor as far as J is concerned but right now there are still many unknowns. I am dealing with it though.

I also am waiting for a packet from the Therapeutic Riding Association. They will do Hippotherapy with Makily but I have to get all these releases and paper work filled out. I believe it's free so that's definitely a plus.

Makily's last EEG came back NORMAL. No change in meds everything was fine. I am going to see if the Neuro will just use the CT Makily had in the ER from when she bumped her head for her "yearly" CT. That would be nice to not have to go through that again.

Awareness Spreading Like WILDFIRE.

I couldn't be more excited about this!

One of the most difficult things for me when Makily was diagnosed was when they told us there was no one else. We had no clue what to expect and I was MORTIFIED of the future.

I felt incredibly alone.

Times are changing!

Stephanie St.Pierre founder of chromosome 22 central (and I'm proud to say a close friend of mine) started a support group more than 10 years ago for families like ours. I can't say enough about her. She was the person I would email or call late at night and tell all my horrible thoughts and fears to when Makily was first diagnosed and everything was such a mess.

Here is what I am so excited about.

I had blogged earlier about a benefit being held in New York. The monies raised are going to go to help other families of children with chromosome 22 disorder to attend the conference next summer in Niagra Falls.

The benefit is being held tonight and it seems to have stirred up interest in Emanuel Syndrome.

This story aired on NY1 news last week sometime. It is about Dylan Rabinovich. His mother Melissa works with NY1 and helped to organized the benefit.

CLICK ME

Is little Dylan a doll baby or what?!

I wish I could squeeze his cheeks!

This is a video that Stephanie put together to show at the benefit. Makily is in there. Look for her.



I am so honored that my baby's angel face was shown to all these people.

Stephanie has told me many times this past year that instead of getting emails from new parents saying their child has "Partial Trisomy 11,22 aka supernumery der 11,22 syndrome" they are saying "Emanuel Syndrome". The name is getting out there, doctors are learning about it and that is so important. I am hoping that one day no parent will ever be told that there is no one else. That they will immediately be directed to Chromosome 22 Central where other families are that can help them. Other families that have been in there shoes before and are still here to talk about it. To give hope and support to them.

If you are interested in making a donation towards helping other families attend next summer's conference PLEASE PLEASE PLEASE visit this page:

CLICK ME TO DONATE

You will see several areas there to make personal donations. I urge you to give. I can't begin to tell you HOW AMAZING it was for me to meet other families with kids like Makily. It is almost a sin in my mind that a family in our situation would not be able to experience that due to financial constraints.

To learn more about Emanuel Syndrome and other chromosome 22 disorders please visit:

CHROMOSOME 22 CENTRAL

Stephanie St.Pierre and a few others were on the Today Show today. I missed it but if anyone finds the link to watch it please let me know.

Have you ever said something....

........intending for it to come out in a positive helpful way and it turns into something OPPOSITE of what you meant to say?

Then to top it off you realize you were also offensive?

I have.

I think the anonymous comment poster on my last entry meant to do that.

At least that is what my hope is.

I have this nagging corner of my brain though saying

"Why would they comment like that and remain anonymous if they really were trying to be positive and helpful"?

Things that make you go hmmmmmmmmmmmmm...................

I debated on whether or not to address the comment as so many addressed it for me either openly (Andrea and Deb, I love you guys) or by privately emailing me.

I am typically not one to keep quiet when someone challenges my faith especially when said person won't even reveal their name.

Besides, it's my blog and I'll do what I want.:

"GOD is in control. Not you, not J's bio parents, not any other human force. Just God. I hope you can believe that He loves you and take comfort in His control over your circumstances."

I KNOW that God is in control more than I could EVER explain. If Makily has taught me NOTHING it is that (and believe me the kid has taught me TONS). Don't "hope" for me to believe that God loves me but KNOW that I believe God loves me. I am comforted in the fact that he has control over my circumstances. That being said he has had control EACH AND EVERY TIME Makily has been on the brink of death and in UNIMAGINABLE pain. He has been in control every time she has struggled to take a breath, when the doctors over dosed her on narcotics and when she had a seizure that almost killed her.

God was in control of every moment of that.

Please understand though that I am human and watching my child suffer is one of the most painful things I have ever encountered. There are no words to describe that pain. It is a physical, moaning, aching pain from the depths of your soul. Knowing that NOTHING you can do will help your child is HUMBLING and heart breaking.

So while it is comforting knowing that God is in control of my life I also know that just because I want something to be a certain way does not necessarily mean it is what God has planned for our family. I didn't want Makily to be disabled or suffer like she has but God allowed that for the greater good. I believe God allows this things to happen to teach others lessons they

never would have learned any other way.

Knowing that, it is still difficult when your child is seizing in front of you and unable to breathe to think:

"Gee Lord this is grand, I thank you for taking the breath from Makily's lungs and making her body twitch uncontrollably so someone else will learn from her...I think I'll dance a jig of glee".

Some may be able to do that but I am not one of them.

"You just seem to be consumed by anxiety, anger, hurt and bitterness, and those things will tear you apart and make you miserable for the rest of your life if you don't find a way to let God work in your heart and give you true peace and strength (and yes, even joy)."

I won't lie their are days that I am CONSUMED by anxiety, anger, hurt and bitterness. Those days have become few and far between. I admit when Makily is suffering or when Little J's future is threatened, my heart cries out and I do feel anxious. I don't think that means I don't trust God. I doubt that any Christian in my situation wouldn't have days they feel like that. HELL, I doubt that ANY PERSON NOT in my situation would not have days like that. I was very angry and bitter at God when Makily was born. In fact I have been brutally honest about that here in my blog so other families in my shoes will hopefully read my words and KNOW they are "normal" and not alone.

I hated God.

I cursed him.

I envisioned him in Heaven laughing at me.

God was with me the day Makily was diagnosed. He had been preparing me for it for years but really in the days, weeks, hours and even minutes before they told us. He was there when I laid on the floor in a pumping room at Shands with my face in a pillow screaming "HELP ME GOD".

I did feel abandoned.

I continued to cry out to him though because deep down my faith was still there, but my HUMAN HEART was so overwhelmed with grief that it was buried.

I AM happy.

I am joyful and I am far from miserable, in fact if you ask anyone that knows me personally, I can almost guarantee you they would tell you that I am loads of fun!

I love my life, I wouldn't change ANY of it.

To some that may sound totally insane but I am who I am today because of all these things.

I kind of like me.

"You talk about trusting God, but it's obvious that you have a big chip on your shoulder where He's concerned.

You're still angry and distrustful of Him because of Makily's condition, and every little thing that doesn't go your way is just more evidence, in your mind, that He is letting you down or doesn't care about you."

I don't agree with any of this statement (and it's rather bold to tell me what is in my mind and heart and what my relationship with God is...especially when you aren't bold enough to say who you are). I also would like to let you know that in saying that in the manner you did, you TOTALLY turned me off to your comment.

There are positive ways to say certain things to people and telling someone they have a "chip" on their shoulder is not a good way to have them be receptive to anything else you have to say.

In addition by saying: "every little thing that does not go your way" belittles the struggles I live on a daily basis.

My mother can tell someone to "go to hell" and she makes them want to run and pack their bags because of the manner in which she says it. In reaching out to hurting people and trying to lead others to Christ I recommend this is something you learn to do yourself.

I do not have a chip on my shoulder where God is concerned. I am humbled that God would give Makily to me to take care of. One of his most precious and innocent souls has been placed in my hands. While I am honored that God has entrusted that to me........it is one of the hardest things I have EVER done. It is also one of the most amazing and rewarding things I have ever done. I am not angry at him or distrustful. As I stated previously I was BOTH of those things for a long time..... It's hard to just let go when every week your child is struggling to do simple things like breathe and eat. It's hard to not be upset and angry when you live in a hospital for weeks a time being treated horribly. I trust the Lord but that does not mean I am not fearful of what he has in store for me or for my daughter. You did not live the life I lived the first year of Makily's life. IT WAS MY OWN private, lonely slice of hell on earth. Even still IT WAS GOD'S PLAN FOR ME TO LIVE THROUGH THAT PRIVATE HELL. I am fearful of what is to come, but I trust and KNOW that whatever is in my future that it IS in God's will. It may hurt like hell and I may have to beg for his mercy.....but I will know it is what he had planned for me. I believe there is a reason for EVERYTHING. I realize that I will NEVER be able to understand why God allows things to take place because I can't even begin to wrap my human brain around what he has planned.

I trust the Lord. I do. That does not mean that if J goes home that I will be able to stand by graciously saying "Thank you Lord for taking this child from me and placing him with people that are not able to give him what he needs and that will likely neglect him, I will not worry about it at all because I know this was your plan".

I know I did not give birth to J but believe me, I love him like I did. In my heart he is MY SON and to Little J I AM THE ONLY MOTHER HE HAS EVER KNOWN.

So imagine having your child torn from you.

Is your faith so strong that you would not question God or be completely heart broken over it?

I love the Lord and I know he loves me. I know he has walked this HARD road with our family and he will continue to. He knows my heart. He listens to me giving him all these things 100 times a day....just to take them back again. He is sitting next to me in church on Sunday when I am clutching Makily in my arms, sobbing for him to heal her, then weeping because I feel guilty in asking him to do something that likely is NOT in his plan.

He understands why I can't give it to him and just leave it.....and that is why he continues to give me these trials.

To teach me patience.

I am learning...but I am only human and I have a long way to go.

I started this blog as a diary, an outlet......IT IS MY THERAPY.

My hope is that other parents of special needs children will read this and say "I get her". I pray that a parent of a newborn Emanuel Syndrome child will come here in their fear and desperation and see that YES it's hard but you will smile again.

I pray that other foster parents come here and read a familiarity in their life and know that they are not alone. That their feelings of unconditional love for these neglected and abused children is AMAZING and that their frustrations with "the system" are founded.

So to the person that posted the anonymous comment I thank you. I do believe in my heart you meant well but you are what Andrea called a "well intentioned Christian". The fastest way to turn a person away from God is to judge them. I feel like you judged me without really knowing all the circumstances in my life and probably missing all the entries where I myself said all the things you "preached" to me.

Next time, say who you are.

God Bless.