3.09.2012

Thankful Thursday

{note: I did actually write this post yesterday, but never got to post it}

Yesterday wasn't the best day for us. We had Kaleb's post op since getting hearing tubes with his ENT. The fluid is now gone, however he is still at a moderate hearing loss range. I'm very sad about this. He will be getting a brainstem response test at our children's hospital along with a CT scan of his ears. He will then be getting hearing aids. This came as a shock to both of us.

Today is a new day and I need to remember what I'm thankful for.

- the beautiful weather in FL -
- my recent visit with Trisomy mommies -
- my cousin visiting after not seeing him for nearly two years -
- nights out alone with my hubby -
- our health -
- Baby K's therapists -
- our local CBS news producer and reporter sitting down with me and listening to K's story -
- Nolan and his helping skills -
- Being able to stay at home with the kids -
- The time in the morning when all of us our snuggled together in our big king size bed - 
- my mom -
- large blankets (instead of sheets) that can be easily tucked into K's crib after he has wet the bed (nightly) -
- K's new learned skills, sitting up from laying down, clapping toys together, etc -
- silly boy time between my hubby and kids -






3.06.2012

Not a Death Sentence and a Letter

Last night I was thinking about today's blog post (lets just pretend I write on here daily okay?). I got to thinking that since this is Trisomy Awareness Month then I needed to bring awareness to doctors, specifically a doctor that scared the crap out of me when I was pregnant with Kaleb. I figured that doctors may Google their names from time to time and maybe this post would come up, and he would be better educated because of my blog post. It sounds good in theory anyway.

I've talked about this doctor before whom I met around my 21st week of pregnancy with baby K. His name is Dr. Locksmith. He is a perinatologist at Winnie Palmer and I was sent to him to have an ultrasound and for further testing to see what was going on with my baby. He's a very quiet man and doesn't have the best bedside manner, especially for a terrified woman laying on his table.

The first time I met him I had an ultrasound and he came in and told me and my husband and due to my baby's clenched fist it appeared that my baby had something called Trisomy 18. He told me that Trisomy 18 is always fatal. He recommended getting an amniocentesis to make sure and left the room to get the long ass needle. Once he left the nurse in the room with us told me that she disagreed with him and did not believe my baby had Trisomy 18 because my son's hands were not clenched a certain way and didn't have a couple other characteristics of Trisomy 18. She gave me hope.

It turned out that my baby did not have Trisomy 18, but Trisomy 9. And since then I have found out that Dr. Locksmith was terribly wrong about the life expectancy of Trisomy 18 children. So here is what I would like to say to him...
Dear Dr. Locksmith,
I respect your work as a doctor and as a person but I need to let you know how terribly wrong you are about Trisomy 18. You came into my room and told me that it looked like my baby would definitely die after birth and walked out of the room. First off, you shouldn't tell someone these things if you don't know for sure. Second off, don't just walk out of the room. Has anyone told you that you're child is going to die? Try walking in my shoes. Finally, I hope you never tell another patient that their Trisomy 18 child is going to die. Trisomy 18 is NOT a death sentence and I know many families with T18 kids that live long and happy lives. There are some much older T18 people alive as well, into their 30's, 40's. Please do not comment on something that you have CLEARLY not researched. Even if my baby turned out to have Trisomy 18 I would not have aborted. Please take time to become more knowledgeable in the area of Trisomy, I would hope you would want to do this for future patients and their children.
Sincerely,
Erin
PS: This is Kayden. He has Trisomy 18 and is 10 YEARS OLD. Look at those beautiful eyelashes, he's such a happy boy! He is just one little boy LIVING with Trisomy, there are so many others and I've come to know many of their mothers.
       
PPS: Here are some links to websites you may find to be correct and informative on Trisomy 18.
Trisomy Advocacy Group
Noah's Never Ending Rainbow
Support Organization for Trisomy (SOFT)
Rebekah's Blog, Redefining Incompatible With Life,
Lily's Blog, Journey with Trisomy 18

3.05.2012

Strength.

During my pregnancy with Kaleb and since I've had him so many people tell me how proud they are that I am so strong and I'm just amazing. I know I've said before but you do what you have to do, anyone can do it when you are pushed. I HAVE to be strong. When your child has an illness, disorder, different abilities, or any area where they need a little push in, you put on your big girl panties and take it head on. It's all instinctual.

However, I recently met one of my dear "Facebook friends" in person, Ashley. And now I know that there is real strength out there. She has been through so much. I'm not sure if I could have the kind of strength she has. She has a Trisomy 18 daughter (Miss Mariah), is only 19 years old (actually 20 years tomorrow), and is a SINGLE MOM...living on her own. She also doesn't have the best support from family.

She is a pillar of strength to me. I am so lucky in that I have my husband, my older son to keep me wacky, and pretty good family support. I just don't know how she does it.

Recently her daughter became very sick and was transported to an Orlando area children's hospital. I met up with two more dear special needs mommies and we went and visited Ashley and Mariah. Ashley is so good with Mariah. Due to Mariah having Trisomy 18 any little sickness can be the difference between life and death, she is currently in the Pediactric ICU, but is doing much better. Mariah has a feeding tube and has a trach. Kaleb has never had either and to see her move around them in ease and know what to do, was just amazing. When the nurse came by and said she needed to start Mariah on a feed, Ashley quickly responded she would do it, knew the size of her trach, and really knew a lot more in some areas than the nurses did.

Obviously if you have a child with medical devices you are going to learn these, but I never have had to...and I thank God for that. It was just breathtaking watching her take charge and know every little thing about her daughter and her medical care, especially at the age of 19 years old. I believe she had Mariah at the age of 16 or 17 (ahhh I can't remember) and having a baby for ANY teen mom, especially a single teen mom is really difficult. But to be a single teen mom with a child with special needs, especially Trisomy 18...and SUCCEED at being a wonderful mother...that's truly amazing.

I'm so glad to call Ashley a friend and know that we live closer than most Trisomy mommies so we can continue to support each other in our journeys. It also doesn't hurt to have our other wonderful mommies Jeannette and Chontee. After spending time with Ashley and Mariah in their PICU room we went downstairs to the cafeteria and sat around a big round table. We talked for what seemed to be hours. It was wonderful. We ALL cried. People around us must have thought we were nuts, but it did help being in a hospital I guess. It's so nice to be around others who truly understand what you are going through and they don't stop talking to you because you are doing things that they aren't doing or understand.

I love being a special needs mommy and I am so glad to know the wonderful people that I do, especially Ashley and Mariah!





By the way...
Happy Trisomy Awareness Month
;) 

2.27.2012

Why?

Nolan is in the "why" stage. Anything I tell him is shortly followed by a "why?". It's slowly driving me crazy. I'm going to keep a running list today so you can get a glimpse into why my mental health is declining.




10:09 am
Me: Can you get the magazines so that baby doesn't get them?
Nolan: Why?

10:14 am
Nolan: Where'd puppy go?
Me: He's in our room.
Nolan: Why?

10:43 am
Nolan: Mommy dinners hot (he says while looking at the oven)
Me: Yeah.
Nolan: Why?

11:40 am
Nolan: Baby's sitted me (translation- I want baby to sit next to me)
Me: Not right now, baby is going to sleep.
Nolan: Why

12:18 pm
Me: {shuts the laptop screen down}
Nolan: Why?
REALLY? I don't even need to say anything now?

12:19 pm (yes a MINUTE later)
Nolan: Mommy where you go?
Me: I'll be back.
Nolan: Why?
Me: I'm going to the bathroom.
Nolan: Why?
Me: Because I have to PEE!

12:24 pm
Nolan: I want my see back. (translation- I want my scissors back)
Me: I don't know about that.
Nolan: Why?
Me: Because you made a mess last time and didn't pick up the paper pieces.
Nolan: {goes and picks up three small scraps of papers and throws them in the trash...of the hundreds on the floor}

Unfortunately I can't sit here all day and post every few minutes our conversations because clearly this whole "why" situation is going to stay a while.


Source: ifunny.mobi via Julie on Pinterest

2.26.2012

Rare Disease Day



Since having Kaleb it's been my mission to educate people on Trisomy and other medical issues and delays that Kaleb has. So many people have never even heard of "Trisomy" and neither had I until Kaleb's diagnosis. I'm constantly learning and wanting to educate myself about other disorders and even more about Kaleb's conditions. So I just found out that there is a "Rare Disease Day" every year, what?! I've never heard about this.

I've added a countdown ticker to my blog for RDD.

This is information from the RDD website, which you can view here.

"Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and this year will be observed February 29, 2012. Learn more about the History of Rare Disease DayPast Successes or the Goals and Plans for this year. 
Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way. 
This website focuses on Rare Disease Day activities in the U.S. To learn what’s happening around the world, go to the global Rare Disease Day website at rarediseaseday.org.
What is a Rare Disease? 
In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.
Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2012, our focus is solidarity."
I'm bummed I didn't know about this sooner because I could have done more to raise awareness. Kaleb falls in to the "rare disease" category due to his chromosome disorder, Trisomy 9. BUT, now that I know I need to let you know. That's my main focus right?...getting the word out there.

I've looked at the events occuring in Florida and found the following incase you'd like to attend (if you don't live in Florida you can find a list on the website above).

University of Florida College of Medicine at Shands Hospital 2nd Annual Rare Disease Day EventDate: February 29, 2012
Location: Grand Atrium of UF/Shands Hospital
The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA), the Orthopaedic & Sports Medicine Institute at the University of Florida College of Medicine & Shands Hospital, and the Byrne Lab for Orphan Disease Research (studying Pompe disease, Barth syndrome, Duchenne and Becker muscular dystrophies, and other diseases) are coming together in Gainesville, FL, for an all-day exhibit and information booth on rare diseases, including bone tumors. Dr. John Reith, Professor and Director of Bone Pathology Lab, Katie Boudreau a member of the Byrne Lab, and Jack Kelly, President, LGDA will be hosting the exhibit, assisted by a number of others from UF Shands. The LGDA, a NORD partner, is a 501 (c)(3) foundation dedicated to patient support and supporting research for this rare disease family. Dr. Reith is a founding member of the LGDA Medical Advisory Council. 
Evangel Temple Sunday Morning ServiceEvent Date: February 26, 2012
Event Contact: Melissa Brown – melbrown_1006@yahoo.comLocation: 5755 Ramona Boulevard, Jacksonville, FL 32210
Families with special needs children are encouraged to attend Sunday morning service as they inform and raise awareness to their congregation about rare diseases and our Special Needs ministry. 
I'm actually looking into the event at UF Shands, obviously that's the closest to us. It's a bit short notice but I'm going to try! :)

I hope everyone had a wonderful weekend, and happy Monday tomorrow!


2.20.2012

Meal Plan

I have desperately tried to start cooking dinners. Sometimes they work out and sometimes..well..they don't (not even a little bit). And that's okay, I think the most important thing is that I'm trying. I'm starting slow...not getting too creative with my dishes and I'm just fine with that.

I've realized the importance of a Meal Plan for the week, but have never succeeded to actually follow one. Normally it boils down to how the day went, what plans we have that night, and my exhaustion level.

BUT...Today is different. I sat down and wrote out a meal plan for the week. I found a great printable here where I can even list the coupons I have for each item, and it puts my shopping list and menu plan together on one page. Thank goodness! So here is a picture (cell) of my planner. Sorry for the terrible quality, I realize daily I need a newer cell phone. You may notice there are a couple of days (okay...3) that don't have any meals listed. Well those are for the inevitable nights that Dennis works late, or I don't feel well, or I go to a church function, etc.. I'm not necessarily set on the exact days of the meals but this way I have an idea, can post it up, and prepare myself all day to make a certain thing. I've also printed the recipes to attach to the back so I can't use the excuse, "Oh dangit, I can't remember where I put that recipe or which book it came from". Which, unfortunately...I use that excuse way too often.


Meal One: 
This is the meal we are making for the news camera's to film in my kitchen again. Very easy and Dennis can help with the chicken. No crazy things to cut up or slice and dice, still healthy, and I can make it pretty. 
Cheddar and Bacon crusted chicken
Salad
Bread

Meal Two: 
(almost too easy)

Meal Three:

Meal Four:

In-case you were wondering how I organize all of my recipes, I use Evernote. You can make list after list. It's like Office Word on crack. It does everything. There is even a clipper tool you can download and if you see something you like and want to keep with you at all times you just clip it and then organize it into which notebook you want it. I have different notebooks; such as, recipes, Dr. Oz (for all the wonderful tips he has so I can remember them), lists for parties, Trisomy, Places to See/Go. The best part of all is that is syncs with everything. I have this downloaded on my laptop, desktop, phone, and iPad. Even with all the different devices all of my notebooks save to each one, no matter where I go I always have my favorites with me! 

Happy Monday! 
I'll post an update tonight or tomorrow after the news crew leaves! 

2.18.2012

Disgusted With Child Abuse

Yesterday there was an arrest of a woman who lives about 40 minutes from me for killing her one year old son. Please read the article here.


Source: google.com via Michaela on Pinterest

She admitted to detectives that she allowed her son to drown by leaving him alone in the bathtub and when she found him unconscious she refused to do CPR, even though she knew how to do it and also refused to call 911. She also told detectives that she "hated her baby".

I am absolutely disgusted. Up until November of 2011 I worked at a Child Protective Investigator in this great state of Florida and I have seen some crazy things. Mother's killing babies, killing their husbands, boyfriends killing babies, and even babies being shaken so hard but had the will to live in SURVIVED. I've also found drugs in homes...and even in the children's rooms. My cases have been on the new and I have worked death investigations. One of my cases sticks out the most which I won't provide details obviously, but was on the news and was one of the most disturbing cases I ever had. Thankfully the child was fine, but what she saw her mother do to her father was horrendous. I think the reason is was even more disturbing was the "matter of fact" nature during my interview with this person. Just like this woman. It shakes me to my core to see people kill someone and be so honest, "yeah, i hated this person", "i refused to help this person"...ESPECIALLY when it is your baby.

Apparently the mother was not on her Post Partum medication, but medication can only go so far, especially when we are responsible for taking that medication. It is a bigger problem. When someone we know, love, and especially LIVE WITH....we are responsible as well. Even more so when we are the other parent. I don't care how much you love your spouse, this woman should not have EVER been left alone with this baby. According to reports (which I understand are not always accurate) this has been going on since the baby was born 4 months premature. She had family and a husband...and this woman was LEFT ALONE with her baby that she admittedly HATED?

Are you joking?

I get so heated over these things. This was a preventable death. Even if the mother did not want to help herself, she could have been forced to leave, the father and child could have left, get an injunction (although may not have been granted), so many things could have happened to protect this child. Obviously I don't know these people or the circumstances and truth behind it all, but I saw this so many times in my cases. "I never thought he would do that...", "She's too nice to hurt anyone", womp womp womp. People can change for the worse, especially when mental issues come into play.

The mother told detectives that the morning she killed the baby that the baby was playing with the remote control and was crawling towards her so she slapped him twice to let him know to leave her alone, put him down for a nap, and when he woke up put him in the bath, then when he was dead dressed him and drove around with him. She admitted she knew he was dead because he was blue and not breathing. SERIOUSLY? Then she brings the baby home to her husband, wrapped in a blanket and tells her husband she killed the baby. How she even managed to leave the house after telling her husband that is beyond me, obviously as protective parents we feel we would have done something differently. She would not have been leaving my house to "go kill herself because she doesn't want to go to jail".

Luckily she was found at Tampa International Airport as she was attempting suicide but too bad for her there were "too many people around" to go through with it.

I think the only two positives about this story is that she was found and that she will be convicted (at least that's what I hope). It doesn't seem like she can get away with insanity even with a mental illness because she told the detectives she did everything on purpose, knew he was dead, slapped him...etc. She knew she was in reality and what she was doing and chose to not get him any help.

Also, just last week another child was killed by his mother's boyfriend. The boyfriend, who is a crack user, took the child that he claimed was a whiney child, for a walk. The mother thought this was odd but didn't stop it. When he returned with the baby the baby was blue and barely breathing. The boyfriend assured her that the baby was just "sleeping". This just makes me want to scream. I think the biggest lesson to be learned in this is not to date crack addicts maybe? Seems like a simple enough concept to me, but to others not so much.

What a great poster!




For more information about how to prevent abuse or what to do if you suspect abuse please read this article, it has some amazing points...things that most people who have never been investigators don't even think about. 

I look forward to one day returning to my job as a Child Protective Investigator because I truly loved my job. The work is hard and you are very rarely thanked for the work you do, not to mention yelled at, cussed at, and told you are a baby stealer often but I did make a difference. After I left my job I actually recieved a card in the mail (that was sent to my office and they sent to my home) by a previous client...I helped her find her son after 8 years of him being taken away from her. It was so touching to get this card, finally I got a thank you and I still keep in contact with her. 

We all need to get involved and look for the warning signs, child abuse prevention is up to all of us because sometimes the parents are unable to (whether on drugs, mental illnesses, domestic violence, family issues, etc). We can't just pay attention to our own children but all of the children, so that we can have a part in ensuring their safety. 



Child Abuse Awareness Comments
~Magickal Graphics~




/end rant

:)