Saturday, June 30, 2012

What defines a “special needs” child?

The formal definition of special needs is “the individual requirements of a person with a disadvantaged background or a mental, emotional, or physical disability or a high risk of developing one”.  I consider myself to be a parent of a special needs child, specifically because Wendy has a chromosome disorder, which resulted in her having a colostomy, feeding tube, and many other malfunctions in her organs. However, the doctors have Wendy listed as having a permanent disability. The way I look at it, is that her disabilities are temporary. Her colostomy should be gone within six months. We eventually hope to completely have her feeding tube gone. And we have no way of knowing if she will be developmentally challenged or not. So, if she has her two surgeries and gets rid of her colostomy and no longer needs a feeding tube and is not mentally handicapped, is she still considered special needs? Will she always be labeled special needs because her organs are mixed up and she has a chromosome abnormality? I’m not sure.

Every doctor we have seen seems to think she will have developmental delays. How severe? They’re not sure. But because of her having a chromosome anomaly, they seem to automatically think she’s going to be intellectually disabled. I don’t think that’s a fair assumption. I’ve never raised a “normal” child, but seeing other babies, my Wendy doesn’t seem to be far behind them, in mental or physical milestones, other than her being almost nine months old and only a little bigger than the average newborn. I’m not saying the doctors’ opinions are wrong, I just don’t think we should assume anything about Wendy because she has proved to be quite extraordinary so far. When I was pregnant and they saw her unbalanced translocation they told me they didn’t even know if she would live, simply because they have nothing to go by. Well, that’s kind of how I feel about them saying she’s going to be disabled all of her life.

It just makes me wonder if I will have the title “special needs parent” all my life (not that that’s a bad thing, because parents of special needs children are usually some of the most exceptional parents out there). I won’t ever be able to say my daughter is 100% healthy because internally everything is not as it should be, but from watching Wendy I don’t know that I will always have to say my daughter is disabled. At this point we are not sure about anything. The only thing I am absolutely positive about is that Wendy is the most perfect little miracle I could’ve ever wished for. And whether I only get to take care of her until she’s 18 or if I have to take care of her until she’s 80, I will love her just the same as I always have.

Thursday, June 28, 2012

Wendy Syndrome, Tie Dye!

Many of you may be wondering why I chose tie dye for the Walking for Wendy shirts. Most disorders have colors to represent their awareness. Down Syndrome is blue and yellow. Cerebral Palsy, Mental Health, and Mitochondrial Disease are green. TB and Heart Disease are red. Leukemia and Lymphoma are orange. Chron's, Reye's, and Chronic Fatigue Syndrome are blue. Purple is for Alzheimer's, Fibromylagia, and Sjogren's Syndrome. White, Scoliosis and Osteoporosis. The list goes on and on. However, there is no color for an unbalanced translocation between chromosome 7 and 10, that does even have a name. So we are calling her unique, rare disorder Wendy Syndrome and we are giving it tie dye as an awareness color. Tie dye was chosen because Wendy has an odd little mix of problems so why not do a mix of colors that blur together. Besides, Wendy Lee looks adorable in tie dye!

If you want to see the shirts, please looks at my Walking for Wendy page on Facebook. Walking For Wendy Facebook Page If you want to order a shirt, please mail me a check (made out to Jamie McLanahan) or cash along with a paper with your name, size and how many you want. The money must be here by September 1, that's when I'm placing the order. Also, if you will not be able to pick up your shirt add $5 extra and I will mail it to you- be sure to write your address down for me. You do not have to buy a shirt to walk with us and you don't have to walk with us to buy a shirt. All shirts are $15. Sizes available are 6, 12, 18, and 24 month onesies, Youth S, M, L, and Adult S, M, L, XL, 2XL, 3XL. Please mail money to:

1037 Bakers Ferry Rd.
Elberton, GA 30635

Also, any donations to March of Dimes can made online at: March For Babies: Walking For Wendy Or you can mail a check made out to March of Dimes and send it to the address above.

Tuesday, June 26, 2012

Surgery… Postponed.

Wendy’s surgery has been postponed. Surprisingly, it has nothing to do with insurance issues. Dr. Wulkan was looking at the results from Wendy’s distal colostogram (the procedure where they put a catheter in her stoma and ran dye through her intestines and took X-rays) and he noticed she has an extremely high imperforate anus (which pretty much means the parts of her intestines that need to be pulled down and connected to her anus is scrunched up in the top of her tummy).

Dr. Wulkan called me himself and said we could either go ahead with the surgery as planned on Thursday, in which he would be doing a blind stick. He explained they would be guessing at where her muscles for her rectum ended. And since her’s goes up so high, it is not a 100% guarantee to be right.

Our other option was to postpone, reschedule at Scottish Rite, and use an MRI to assure the correct placement of her rectum. He explained this was a relatively new way of doing the surgery and Scottish Rite is the only hospital in the United States that is currently performing an anorectoplasty this way. I even found an article written by the surgeons talking about why this is a better and more accurate way of correcting an imperforate anus.

We decided to reschedule. As parents, we want Wendy to have the best possible chance to have a normal life, and we definitely don’t want her to have to live with a colostomy forever, so this surgery needs to be successful. The same surgeon will be doing it, it will just be done at a different location where they have MRI surgical suites. I will be talking to Beryl tomorrow (she does all of the scheduling, but she only works Monday, Wednesday, Thursday, and Friday) about setting up a new date.

I feel relieved that the surgery is not in two days. For some reason, I had a bad feeling about it. Now I feel much more relaxed and I have more time to get everything that needs to be done situated. Everything was being rushed and I had a week’s worth of things to do and only a day left to do it.

I’ve also started selling tutus on Etsy. Visit my store to check out my paintings and tutus.


Saturday, June 23, 2012

Wendy's surgery date is coming up fast. Too fast. It is in 5 short days. And honestly, every time I think about it, a huge lump forms and my throat and eyes fill with tears. Thursday will the be the third time Wendy has had surgery, the third time I've had to kiss my baby and walk out of the room, leaving her with a team of nurses and doctors, entrusting my most precious possession to their care. And let's be honest here, as a mother, no one is ever good enough to care for your child, except you. You would think it would get easier, but it doesn't. If anything, I believe it's gotten harder. I have become more attached to my child than I thought possible. I am positively dreading this surgery.

When I was in the hospital pregnant with Wendy and when Wendy was in the NICU, we received many cards and letters of encouragement. If you would like to send a Get Well or Thinking Of You card to Wendy, please do. Support and prayers do help our little family cope with these hard times. And I save all her cards in a box in her room so she can have them when she's older. That way she will know just how many people loved and cared about her!

If you'd like to send a card/letter/etc. you can send it to
1037 Bakers Ferry Rd.
Elberton, Ga 30635

Wednesday, June 20, 2012

Upcoming Surgery Drawing Near

As most of you know, Wendy was born with an imperforate anus. This is the reason she has a colostomy. Surprisingly, it’s fairly common in children occurring in about 1 in 5,000 births. Depending on the severity, it can take up to 3 surgeries to correct. Some times doctors can fix it without having to put in a colostomy, however, Wendy was so tiny the surgeon wanted to perform 3 different surgeries to repair her because you only have one chance to fix it and get it perfect. We definitely want it perfect because we want her bowels, colon, and anus to work properly!

In 8 short days Wendy will undergo an anoplasty. The surgeon will actually be going in to make her an anus. About 3 weeks after surgery, we will have to start dilating it to get it stretched and working. After that, they will be able to go in and connect her. That means no more colostomy!

I’m excited to be so close to having this problem corrected, but my nerves are freaking shot. It’s terrifying knowing that I have to take Wendy in for a procedure. I feel like something may go wrong and she may end up back in the hospital for another 71 days and I could not handle that. As long as everything goes according to plan, Wendy is only supposed to send 2-3 days in the hospital. But when she had surgery for her g tube she was only supposed to in there for another 3-7 days and she was in there for 4 more weeks. In situations like this, you pray for the best and prepare for the worst. I’m hoping since she’s bigger and stronger now that it will be less complicated and less demanding on her tiny body. I know it will be hard no matter how well the surgery goes though. It is breaking my heart already to even think about her being on a ventilator again. But this is something that we don’t need to put off. So I’m having to put my mommy worries aside and be strong for Wendy.

On a very positive note, I am almost at 18,000 views! That is so fantastic. I honestly cannot believe how many readers and how much support has come from this blog. I really hope you all will continue to follow up on Wendy’s story and keep her in your prayers!

Monday, June 18, 2012

Yes, I am a stay-at-home mom. Problem?

I know this blog is supposed to be about Wendy, but I can't help but voice my opinion about this. I recently read an article by Elizabeth Wurtzel called "1% Wives Are Helping Kill Feminism and Make the War on Women Possible".

This is the article...

When my mind gets stuck on everything that is wrong with feminism, it brings out the 19th century poet in me: Let me count the ways. Most of all, feminism is pretty much a nice girl who really, really wants so badly to be liked by everybody -- ladies who lunch, men who hate women, all the morons who demand choice and don't understand responsibility -- that it has become the easy lay of social movements. I am going to smack the next idiot who tells me that raising her children full time -- by which she really means going to Jivamukti classes and pedicure appointments while the nanny babysits -- is her feminist choice. Who can possibly take feminism seriously when it allows everything, as long as women choose it? The whole point to begin with was that women were losing their minds pushing mops and strollers all day without a room or a salary of their own.
Let's please be serious grown-ups: real feminists don't depend on men. Real feminists earn a living, have money and means of their own.
If the movement had been serious about being serious then the idea could not have caught on that equal is how you feel. Or that how anyone feels about anything matters at all. Men know better. They look at numbers, and here is how the statistics are running years after women first started screaming and yelling and burning bras: We still earn 81 percent of what men do, and an act to make things more fair was blocked in Congress by Republicans. For anyone who doesn't care to count, but understands traffic signals mixed with policy speculation, I think it's safe to say that the day is near when a teenage girl will be forced to get a vaginal probe before she is issued a learner's permit in the state of Virginia. And this is all because feminism has misread its mission of equality as something open to interpretation, as expressive and impressive, not absolute.
Don't agree? Try this: smart is how you feel, pretty is how you feel, talented is how you feel -- we are all beautiful geniuses. Feminism should not be inclusive, and like most terms that are meaningful, it should mean something. It should mean equality.
And there really is only one kind of equality -- it precedes all the emotional hullabaloo -- and it's economic. If you can't pay your own rent, you are not an adult. You are a dependent. But because feminism has always been about men -- our relationships with them, our differences from them -- as much or more than about money, it's had few consistent tenets. Hemlines up, hemlines down, choice this, want that -- once we get away from the scientific need for sustenance, it's all gobbledygook. I really don't consider it my feminist business that an awful lot of strong and solid women -- Simone de Beauvoir, famously -- are idiots about love and romance any more than I care that Helen of Troy's face started a naval war, because we are all fools for love. But I think it is my concern that all people, with whatever foolishness, are able to provide themselves with gas and food and lodging.
I have to admit that when I meet a woman who I know is a graduate of, say, Princeton -- one who has readThe Second Sex and therefore ought to know better -- but is still a full-time wife, I feel betrayed. I'm not much of a moralist -- I have absolutely no right to be -- but in the interest of doing what's right both for me personally and for women generally, I have been strict with myself about earning my keep. For the longest time I would not date anyone who would now be called a one-percenter because money and power are such a potent combination, and if I am going to be bossed around, I don't want that to be the reason. When it's come up, I have chosen not to get married. Over and over again, I have opted for my integrity and independence over what was easy or obvious. And I am happy. I don't want everyone to live like me, but I do expect educated and able-bodied women to be holding their own in the world of work.
Because here's what happens when women go shopping at Chanel and get facials at Tracy Martyn when they should be wage-earning mensches: the war on women happens.
Failing as a feminist is a unique problem of the wealthy, but consequences impact women all the way down the line. It happens that most women -- and men -- are living feminist lives because of economic necessity, whether they mean to or not. Most families are kind of like Sarah Palin's was before she made her pit-bull star turn: lots of kids and both mom and dad have to bring in what money they can. According to the Bureau of Labor Statistics, in 2011 nearly 71 percent of women with children under 18 worked. Most mothers have jobs because they need or want the money and fulfillment; only in rare cases are they driven by glory. To be a stay-at-home mom is a privilege, and most of the housewives I have ever met -- none of whom do anything around the house -- live in New York City and Los Angeles, far from Peoria. Only in these major metropolises are there the kinds of jobs in finance and entertainment that allow for a family to live luxe on a single income. In any case, having forgotten everything but the lotus position, these women are the reason their husbands think all women are dumb, and I don't blame them. As it happens, fewer than 5 percent of the CEO's of Fortune 500 companies, 16 percent of corporate executives, and 17 percent of law partners are female. The men, the husbands of the 1 percent, are on trading floors or in office complexes with other men all day, and to the extent that they see anyone who isn't male it's pretty much just secretaries and assistants. And they go home to...whatever. What are they supposed to think? They pay gargantuan American Express bills and don't know why or what for. Then they give money to Mitt Romney.
Seriously: Did Romney actually tell his wife that her job was more important than his? So condescending. If he thought that, he'd be doing it. Being a rich mom -- even with five sons, bless her heart -- is not even sort of a job. Housekeepers there, servants there: it's not just that being a wealthy wife is not work in the way that being a corporate litigator or a corporal in the Army is work, it's that it doesn't even involve picking up Lego pieces and putting away GI Joe dolls or much of any of the stuff that makes being a mom a job.
Hilary Rosen would not have been so quick to be so super sorry for saying that Ann Romney has never worked a day in her life if we weren't all made more than a wee bit nervous by our own biases, which is that being a mother isn't really work. Yes, of course, it's something -- actually, it's something almost every woman at some time does, some brilliantly and some brutishly and most in the boring middle of making okay meals and decent kid conversation. But let's face it: It is not a selective position. A job that anyone can have is not a job, it's a part of life, no matter how important people insist it is (all the insisting is itself overcompensation). Even moms with full-time jobs spend 86 percent as much time with their kids as unemployed mothers, so it is apparently taking up the time of about 14 percent of a paid position. And all the cultish glorification of home and hearth still leaves us in a world where most of the people paid to chef and chauffeur in the commercial world are men. Which is to say, something becomes a job when you are paid for it -- and until then, it's just a part of life.


I have honestly never been more disgusted with anything I have ever read. I have no idea where her article even truly touches on the topic of feminism because all I got from it was her attacking stay at home moms. "I am going to smack the next idiot who tells me that raising her children full time -- by which she really means going to Jivamukti classes and pedicure appointments while the nanny babysits -- is her feminist choice." Let's be honest. I'm not big on the whole feminism thing, but isn't bashing other women and being a feminist contradicting? And what she's saying is that by staying at home and raising my own child is further oppressing females?

Average women who work and then decide to be a stay at home mom does so for two reasons. One, because almost their entire paycheck would go to childcare and two, because they want to be with their children. Why would a woman chose to sit in an office all day while their child is being raised by someone else and they're not even bringing home anything to show for it? Some mothers do chose to work, because they don't like to stay at home all day, every day, but it's a choice. If you are truly a feminist and believe in women's rights, then you should believe that it's a woman's decision whether or not she works and whether or not she wants to be dependent on her husband.

I feel like Elizabeth Wurtzel is Julia Roberts in Mona Lisa Smile. Like you can't go to college, have a degree, and then be a housewife. I think an education is so important. I myself am working towards a bachelors degree. And when or if the time comes that I decide to enter the workforce I will have the tools needed. The whole point that she tries to make about how educated and able-bodied women should be able to hold their own in the world of work. Well, my child is not able-bodied. She is 8 months old with special needs and unless you are a registered nurse (and even then) I probably wouldn't find you qualified to take care of her. I don't see how that makes me any less of a woman.

My husband has served in the Army. He spent a year in Afghanistan. One day, he wanted to pick up some things at Walmart, but he was watching Wendy that day. So after packing her and her feeding pump up, he went to the store. He came home empty handed. Zed told me that he absolutely could not get anything while dragging her carseat, her feeding pump, and herself. He said he has no idea how I grocery shop with her. My point of this story is that stay at home moms can handle anything from raising a child to snarky criticism from an inexperienced source.

"Which is to say, something becomes a job when you are paid for it -- and until then, it's just a part of life." I do get paid for what I do. I have the love and adoration of my child and husband, and that, Elizabeth Wurtzel, is something you will never have. So I pity you and your foolishness. 

Tuesday, June 12, 2012

As Long As It's Healthy...

There are so many people who get pregnant and when asked if they hope it's a boy or girl, they reply "I don't care, as long as he/she is healthy". I know most of these people don't actually mean they won't love their child if they're not healthy, but this is just a very poor choice of words.

When I got pregnant, I told my Nanny that no matter what, I loved my baby, even if he/she wasn't healthy. I told her I was willing to take on the challenge of a special needs child. Now that I look back, I have no idea why I even said that, because we had no idea anything was wrong with Wendy until 22 weeks. Maybe God was already preparing me for the difficult journey I was going to undertake.

As most of you know, I had an amniocentesis done at 22 weeks pregnant. So many people say, "I would never do that!" "I am keeping my baby no matte what!" and "Why test if it's not going to change your opinion of your child and if you're not going to get rid of it?". My explanation is simple. I was already deeply in love with Wendy Lee when we first saw the cysts in her brain and the fluid around her heart in my 21 week ultrasound. I wanted to know what was wrong and what measures we could take to make sure she had the very best care possible when she was born. I wanted a neonatologist present when I delivered, I wanted a level 3 NICU in the hospital I delivered, and I wanted to be close to a children's hospital who had professionals that could handle any problem that could possibly arise from her abnormalities. And that's exactly what I got. I had an amazing team of obstetricians at Maternal Fetal Group in Nashville. I received excellent care from the staff at Centennial Women's Hospital during the 5 weeks I was there. And Wendy was transferred to Vanderbilt Children's Hosoital a few hours after she was born and I was less than 5 miles away from her that first night and was able to sign myself out 18 hours after giving birth to go be with her. With all that being said, I fully stand by my decisions of being tested and my decision of keeping my very special baby. Genetic testing may not be the right decision for every family, because as with many procedures, it comes with its own set of risks. Every family has to decide for themselves and for their unborn child.

And as for the people who say they don't want to raise a special child, you don't deserve a special child! Special children can be the most amazing blessings and the most loving children. Yes, it can be difficult. And no, it's not easy. But parenting a special child has more rewards than you can imagine. There are days when I am so exhausted and wish that Wendy was "normal". Then I look back and feel guilty for feeling that way because I shouldn't be jealous of parents with healthy kids. It's parents of healthy kids that should be jealous of me. You may think that sounds absurd, but it's true. Of course, no parent wants to see their baby in the hospital, no parent wants to give their baby medication daily, no parent wants to see their kids have surgery, and no parent wants to spend the majority of their week at a doctors appointment, on the phone fighting with insurance companies, or ordering home health supplies. But in reality, it's bigger than all of that. I see that God has blessed me with this miracle child. And I have been able to witness all of it from conception to birth to now 8 months old. If Wendy was your child, you would completely understand.

Friday, June 8, 2012

Wendy Lee is 8 months old today! I am so proud of everything she's accomplished. She is keeping up pretty closely with some milestones.

At 1 month old, Wendy could respond to sounds and stare at faces. At 2 months, she was able to lift her head while lying on her tummy and she could hold her head up for a short period of time.  At 3 months, she could visually track items. At 4 months, she could recognize my voice and she would follow it. At 5 months, she began smiling. At 6 months, she knew her own name. At 7 months, she started babbling and saying "ma ma ma ma" and she can also stand with help of holding her hands. Now she's 8 months old and she plays with her feet, coos all the time, can roll over, and is learning to sit on her own. For a preemie with a disability, that's not bad!

Wendy went to Egelston yesterday morning for a distal colostogram. They put a catheter in her stoma and pushed dye through there. They watched her under fluoroscopy and then took a few x rays. The surgeon just wanted to see how far her colon was from her would-be (soon-to-be) anus. Wendy did pretty well. She hated being held down, but she acted the like procedure didn't hurt. We didn't get much information at this appointment other than she has a high imperforate anus- meaning her colon is extremely high in her body instead of low, down near her booty. But as far as we know, she will still be able to be fixed.

Well I suppose I should get some sleep. I'm home alone. Daddy's taking care of Wendy at the lake house, so mommy could sleep.  I do miss my Wendy terribly though. Saying goodbye to her this time was just as hard as the first. Hopefully my Ambien will kick in soon and I can have a sleep full night without having to get up to put more milk in the pump, or give medicine, or cuddle a spoiled baby. So again, I should go....  Until next time guys.

OH! I almost forgot to tell everyone... we are PAST 17,000 views!! You followers are amazing!

Monday, June 4, 2012

Define My Day.


     1. In need of sleep or rest; weary.

     2. Bored with.

I am tired. I believe little Wendy is getting more teething because, bless her heart, she has been awake several times a night for the past two days. So in turn, mommy and daddy are not getting the rest they need. Zed has been taking the shift until 11-12 and I get up after that. Still, even with help, my
energy is spent.

I am tired of struggling with insurance for Wendy. TriCare is still saying Zed's not in the system and Medicaid says we make too  much for Wendy to get SSI and not enough to use the Katie Beckett Waiver. Wendy has an appointment for a procedure at the Children's Hospital on Thursday to have dye run through her mucous fistula. This procedure will allow the doctors to precisely see her rectal anatomy.

I am tired of so many appointments.  Tomorrow Zed has to go to the Social Security office in Athens and to Anderson to get a new ID card for the military. Thursday, as I mentioned, Wendy has her procedure. Friday I have a WIC appointment because Wendy is running out of formula and honestly, we don't have any extra money seeing as we had to pay several hundred dollars for her medication this month. Then next Tuesday Wendy has a neurology appointment in Athens. I don't think it is ever going to slow down.

I am exhausted, fatigued, and drained. I have a million different things going on right now. But on the bright side, I have a sweet, beautiful baby girl, two stupid dogs that love me, supper cooked, and clean sheets to sleep on tonight! Which, speaking of clean sheets, I am fixing to take a nice hot bubble bath and lay on my big bed with Wendy.