Tuesday, July 31, 2012

Fan Favorite

Okay, so we didn’t win a free entry to the pageant, but we get a head start on fan favorite! With fan favorite, each dollar donated counts as one vote.

 All you have to do is go to paypal, and login.  
Click Send Money.
Where it says “To” type in ShiningMomentsPP@gmail.com 
Where it says “Amount”, you can donate any amount, $1=1 vote.
Then click Personal and select Gift then click continue.
As the subject put Wendy Fan Favorite then click Send Money.

That’s all.
Please share this blog with your friends and let’s get this baby a crown!

Wow. Huge show of support!

First, can I just say, Wendy’s friends/followers/supporters are nothing short of AMAZING!  As you all know, Wendy is going to be in her first pageant August 25.  The pageants Facebook site decided to do a contest and whoever had the most friends like the page and comment the child’s name would get free entry or a prize. This contest started over a week ago (on the 22nd to be exact). I just put it out there for Wendy two days ago! And already she is in second place- with 145 votes and the lead only having 163. So I just had to share a blog to shout out to everyone that has liked the page and shared with your friends! Thank you. Thank you. Thank you.

And the contest isn’t over. We have until 5:00 to get Wendy in first place!


Acceptance:  favorable reception, approval.

We special needs parents crave acceptance for our children.  We want them to be welcomed with open arms and treated like any other child, which is one of the reasons I am putting Wendy in a pageant that isn’t just for special needs kids (and yes, there are pageants out there specifically for SN kids). I don’t want Wendy looked upon as being disadvantaged. She is a strong, beautiful baby girl that just happens to be a little different.

Saturday, July 28, 2012

Crazy Pageant Mom?

Everyone that knows me, knows that I have been involved in pageants since I was a baby myself up until the time I turned 18. The whole time I was pregnant, I said if I had a baby girl, she would be in pageants. But now the time has come. The new dress is in. The outfit of choice has been custom made. And pageant day is less than a month away. So why am I now feeling like a crazy pageant mom?

And when I say “crazy pageant mom” I don’t mean in the context that you’re thinking. I don’t mean the hit-the-kid-on-the-head-with-a-brush-because-they-won’t-stay-still crazy pageant mom. I mean, crazy pageant mom, as in, I’ve just entered my special needs daughter in a pageant where she will be competing with normal kids. I figure for the duration of the pageant, I will unhook her feeds. I don’t want to be dragging a feeding pump onstage. I also am hoping her costume will stay in place and no one will see her g tube button or her colostomy. I know my child is beautiful, I just don’t know how she’s going to act on stage.

For anyone who wants to be there to witness Wendy’s first pageant, it will be August 25. I will post time and place at a later date.

Tuesday, July 24, 2012

Top 5 Necessities For Raising A Child Like Wendy

5. A Good Video Monitor: If you have a child with special needs, they will most likely come with accessories. Whether it be a heart monitor, a pulse oximeter, feeding pump, etc., you want to be able to keep an eye on said child to make sure he/she hasn’t gotten tangled up in a cord or pulled something loose. Before I had a video monitor, I was getting up out of bed every few hours to check on Wendy. Now, I simply turn over and check my monitor.

4. Organization: This comes into play with many different aspects of Wendy’s life. I have all of her supplies in her closet in drawers that are labeled. When you need a new button or a colostomy bag, the last thing you have time for is to search for something. Also, I make all of Wendy’s food for the day every afternoon. I measure it out and put it in separate bottles in the refrigerator- that way when I have to get up at 3am to add more food, I don’t have to mix a bottle or measure it out.

3. Extras: You should never leave the house without extras. I will forget to bring diapers before I forget to bring an extra button, an extra colostomy bag, and an extra feeding pump bag. The difference in being prepared and not could mean an unneeded trip to the ER. If Wendy’s button comes out and I don’t have an extra, I’d have to take her to the nearest ER to get something put in ASAP. Also, number 4 applies to having extras. Make sure the diaper bag is super organized so you can get to what you need, when you need it.

2. Patience: There will be days when you want to scream at the top of your lungs and pull your hair out! But you can’t. You have to keep it together. That’s where patience comes in. Most days are hard. Some days are harder than others, but no matter what that’s still your child and you still have to take care of them. There are days that Wendy’s colostomy bag refuses to stay on. I’ve been through 5+ bags in one day! Wendy has ripped her button out on several occasions. On those days, I have to take a deep breath and get on with it.

1. Motherly Instincts: This may seem like a silly one, but to me, it’s the most important. I am Wendy’s voice. I am her only voice. And if I don’t think something is right I have to speak up, whether that be to an insurance company, a doctor, or whomever. Wendy is my child, and it’s my responsibility as her mother to be her advocate. If I think she is having a lot of reflux one day, I can up her dose of Pepcid. If I want a second opinion because I didn’t get the answers I wanted, I will take her to another doctor. Wendy’s pediatrician has always told me to use my instincts in raising Wendy because “mother knows best”.

Itsy Bitsy, Teenie Weenie

As I was dressing Wendy this morning, I realized I was putting her in a newborn size onesie. Most people that see her cannot believe she is 9 months old, especially since she weighs only 11lbs and is 24in long. But if you had seen her when she was born, you would see a tremendous growth!

My sweet bambina only weighed 3lbs 15oz, so she has gained 7lbs since birth! And has grown 7 inches! That’s fantastic!

I now understand why mothers start wanting another baby when their child starts getting close to a year old. (Don’t worry, I’m not having baby fever or anything! No more kids from this mama.) It’s just that these tiny creatures start turning into little people who don’t always want to snuggle anymore. They become more independent and self sufficient. Wendy still can’t crawl or walk, and she can’t yet sit on her own, but she thinks she’s grown. She wants to do things by herself and if you try to help her, she will push your hand away. My little girl is growing up.

As for an update on Wendy, she’s not vomiting anymore and I’ve put her back on formula after giving her Pedialyte last night. Her fever is also gone. I’m not sure if it was from teething or a small tummy bug, but whatever it was, she seems better today. She’s more active and not near as lethargic. I’m glad. Mommy hates seeing bambina sick.

Monday, July 23, 2012

Simple Stomach Bug?

People probably think I’m crazy when I post on Facebook that I’m really worried about Wendy vomiting for a day and running a slight fever. And most people thought I shouldn’t switch to clear liquids so soon.

But here’s the deal… Wendy has intestinal malrotation. Her intestines and bowels didn’t form in the proper place while she was in utero. She has had a surgery to help her intestines from rotating and cutting off blood supply, but that surgery only reduces her risk, it doesn’t eliminate it. Therefore, I switched Wendy to Pedialyte immediately after I noticed she was vomiting and running a slight fever. If it was just a tummy bug, she should be able to tolerate clear liquids. If her intestines are twisted, she will vomit everything.

Intestinal malrotation itself doesn’t cause any problems. However, if tissue (Ladd’s bands) blocks the first part of the small intestine or if a condition called volvulus (bowel twists on itself) occurs, it could be life threatening if not treated. The longer your intestines go with out blood supply the more they will have to remove because without blood your intestines will turn into dead tissue.

During Wendy’s g tube surgery, her surgeon noticed the malrotation. So she went ahead and preformed a Ladd’s Procedure. In this surgery, the Ladd’s bands are divided, they widen the small intestine’s mesentery (what connects parts of the small intestine to the back wall of the abdomen), and they preform an appendectomy. But this is not a fix and we will always have to watch for symptoms of her intestines being twisted and we have to make sure every doctor knows she has intestinal malrotation.

I just wanted you all to understand why I worry so much about some things that may seem minute to other mothers. Wendy is different, so I parent in a very different way than most.

Thursday, July 19, 2012

Growth, Development, and Milestones.

Note: all of my information is coming from the book "What To Expect The First Year".

I know all babies develop differently. Each individual child learns to do things on their own time frame. I am simply blogging this because I was reading "My Baby Rides The Short Bus" and one of the dads did this for his son, to see which milestones he hit "on time" and the ones he was "behind". I want to see Wendy compared to "normal" babies her age.

Month 1:
Your baby should be able to: lift head briefly, focus on a face
Wendy could focus on our face and she found her hands this month.

Month 2:
Your baby should be able to: smile in response to your smile, follow an object, vocalize in ways other than crying (cooing)
At 9 weeks old Wendy could lift her head.

Month 3:
Your baby should be able to: on stomach- lift head up 45 degrees, follow an object 6 inches past midline
Wendy came home from the hospital this month. She was already sleeping through the night. When we put her on her tummy in her boppy pillow, she could hold her head up, not very steadily though.

Month 4:
Your baby should be able to: on stomach- lift head up 90 degrees, laugh out loud, follow an object 180 degrees.
Wendy had no new developments this month.

Month 5:
Your baby should be able to: hold head steady when upright, on stomach- raise chest supported by arms, roller over (one way), pay attention to a very small object, squeal in delight, reach for an object, smile spontaneously, grasp a rattle
During this month, Wendy smiled for the first time. She also learned to grasp toys.

Month 6:
Your baby should be able to: keep head leveled with body when pulled to sitting, say ah-goo or similar vowel-consonant combinations.
Wendy's sixth month of life, she found her feet and learned to roll onto her side. She can also turn the page of a thick plastic book.

Month 7:
Your baby should be able to: sit without support, feed self a cracker
This month, Wendy laughed out loud and got in her first tooth.

Month 8:
Your baby should be able to: bear weight on legs when held upright, pass object from one hand to another, turn in the direction of a voice, look for a dropped object
Wendy had been bearing weight on her legs since she was 4-5 months old. This month Wendy got her second tooth and rolled over.

Month 9:
Your baby should be able to: work to get a toy out of reach, look for dropped object
Wendy said "mama" and is learning to wave bye-bye. She is also babbling a ton.

Month 10:
Your baby should be able to: stand holding on to something, pull up to standing from sitting position, object if you take away a toy, say mama or dada indiscriminately, play peekaboo
Wendy can bear some weight on her legs but not enough stand but she will cry if you take away my iPhone. She loves that thing.

Here's my reality. Wendy is 9 months old (in her 10th month of life). She still can't sit alone and she is nowhere near standing or crawling. But she's not they far behind mentally. As long as she's happy, I'm happy, no matter the future hold or what milestones she will or won't reach.

Tuesday, July 17, 2012

Have I unintentionally subjected my daughter to lifetime of pain?

Many of you that know me personally, know that I have had medical problems for quite some time. I even quite school my junior year because of all the issues I was having. And after being tested from the time I was 13, I still, until today, had no answers.

I went to a new rheumatologist today because ever since I have had Wendy, it seems my symptoms have been worsening. I have been to rheumatologists at the Medical College of GA, Emory University, and Vanderbilt University, and this new doctor- Dr. Agha, figured out more in 10 minutes than they did in 10 visits.

Dr. Agha says I have Hypermobility Syndrome (HMS). HMS is a condition in which joints easily move beyond the normal range. After examining me, Dr. Agha said my hands, particularly my fingers, my legs (knees and ankles), and my back are all extremely hyper mobile. He said there are other joints, such as my neck and shoulders that are hyper mobile, but not as badly as these others. Luckily, I have a diagnosis now and we are working on a solution to the problem. That means taking more medication, only doing very light exercise, and reducing stress in my life. He also suspects I may have an autoimmune disorder, which he will follow up on in 4 weeks when I go for another appointment.

My main concern with HMS is Wendy. It’s hereditary. Zed and I have both noticed Wendy is abnormally flexible and now knowing I have HMS I’m worried she will have it too. I would hate the thought of my baby being in pain because of my passing down a syndrome. And also, the whole time we thought it was Wendy’s fault for not swallowing which caused my water to break, I now know it could have been my body. Two symptoms of HMS are premature labor and a very fast progressing labor- both of which I had. http://www.hypermobility.org/pregnancy.php 

Hopefully, I will start to feel better soon and get my joints stable and I will also be mentioning this to Wendy’s doctor, that way if she’s suspected to have it, we can take measures to prevent further injury.

Wednesday, July 11, 2012

I have to take my 9 month old to a child psychologist… you’re kidding, right?

So I got a call from Wendy’s case manger for the Katie Beckett Waiver, where we are trying to get Medicaid for her. Not only did she call me a liar, she told me I have to take my 9 month old to a psychologist. First off, she told me I didn’t fill out the original paperwork, that I had made a really bad copy and sent it in. Which, I most certainly did not do. Why would I make a copy of the papers she sent me? When I told her I did not do that, that I had my doctor fill out the papers she sent, she kept saying, I disagree, I disagree, you can speak to my manager, which I did. So there are going to be new copies sent to me and I have to have the doctor fill them out, again.

As if that’s not a big enough pain, because Wendy’s pediatrician is in Athens, she also told me I had to send in therapy notes (which I already have, from Wendy’s oral therapy) and a letter from a psychologist because Wendy’s pediatrician put down that she has developmental delays. Of course she has developmental delays, she’s a preemie with a chromosome abnormality! And developmental delays are in all of her charts because of that fact. However, her case manager is saying that for Wendy to be eligible for the Katie Beckett Waiver, that she has to go to an actual child psychologist.

Call me crazy, but that really upsets me. I don’t want any doctor or psychologist analyzing my 9 month old unless it is medically necessary, which it is not. It was hard enough for us to read the report from the physical therapists saying Wendy was behind in all areas, however, once a therapist came to our house and saw her interact with me, she said the report was completely wrong. A baby does not act the same in an odd environment with a complete stranger trying to hold them. I don’t want to have to read another report saying how behind my child is and how mentally retarded she’s going to be. Because at 9 months old, you can’t tell how she’s going to act in the future. Every child develops differently, and just because Wendy isn’t at the same level as some other 9 months old, doesn’t mean there is something wrong with her. I’m just really opposed to the idea of having her evaluated at such a young age. All of her doctors have recommended not to have her tested until she’s at least 2-3 years old because of the fact that she’s a preemie and that the tests have no validation at this point. But it doesn’t look like I have much of a choice.

Funny how easily they give out Medicaid to so many other people, but we’re having this much of a problem getting it for Wendy.

Monday, July 9, 2012

It should not be this difficult.

The government is so twisted, it's ridiculous.

And frankly, it pisses me off that so many people easily get on Welfare and food stamps, but when it comes to trying to get Medicaid for my disabled daughter, it's like jumping through hoops that are set on fire and trying not to get your butt singed.

When Wendy was born, the social worker at Vanderbilt told us to apply for SSI because Wendy had a permanent disability and we would be able to use the money to take care of her and to supplement the income that I would never have the opportunity to make because I would be staying home to care for her. Included in SSI, was Medicaid- which would be very helpful because Zed's army insurance ran out when she was 6 months old and just because no insurance company could technically deny her coverage because of her disability, they could certainly make the premiums so high that we couldn't afford them.

Wendy was denied SSI, because Zed made too much money. I was fine with that because we were making ends meet okay and we didn't need the help of government check. However, the problem of insurance was still present. Zed joined the National Guard for a year, non-deployable. However, when this year is up, we have to figure something else out because if he rejoins and his unit deploys, he goes too. And I do not want to be a single mother with a disabled child.

That's when we started the process for the Katie Beckett waiver. Our first problem with the KB waiver was the case worker we were given. She's rude and about as useless as tits on turtle. Every question I asked about the parts of the forms i was supposed to fill out, she just skirted around answering the question, but saying things like "you need to include estimated monthly costs" apwhen I asked if I was supposed to include the cost of seeing her surgeon and specialist in the monthly costs of physician services. I had all the rest of the paperwork filled out by Wendy's pediatrician like I was supposed to and faxed it in. Now she calls and says it needs to be mailed in. Oh, and it has to be there before the 15th or her case is denied. Also, on part of the paper the doctor filled out is a recommended level of care that must be completed. The only options for that are, "hospital", "nursing facility", or "intermediate care facility for the mentally retarded". Well Wendy doesn't need any of those levels of care. She is taken care of just fine at home. So I asked for her to explain each further. She emailed me back saying:
"A level of care must be selected. If not, Wendy does not qualify for this waiver. Hospital- same level of care a hospital provides. Nursing home- same level of care a nh provides. And, IC/MR is intermediate care/mentally retarded facility."
That did not help at all.

And on top of having to deal with the fact that Wendy is most likely going to be denied, I also have barely gotten any sleep. Wendy didn't go to bed last night until 10, which is highly unusal- she's usually asleep by 4-6pm. And starting at 12, she woke up every single hour. So this mommy has had no sleep. I'm assuming she's probably teething, but whatever it is, I hope it passes soon, I don't think me or Zed will be able to function if this continues much longer.

Sunday, July 8, 2012

Raising my daughter in a true southern fashion.

Now, the south hasn’t always gotten everything right (e.g. slavery), but when it comes to raising proper women, they hit that nail right on the head.

I’m about as southern as they come and I don’t mean in the “I use improper grammar and wear camo everyday” (even though, I do hunt and fish on occasion). I believe in God and saying ma’am and sir to everyone. I never not send a thank you card (except when I was put in the hospital when my water broke, and I think that was as good of excuse as any). I enjoy sweet tea, homemade biscuits, and say y’all way too much. I will never send you invitation to a party on Facebook, I will send you a real invite in the mail. You will never catch me wearing pants to church and I always have makeup on before I leave the house. And you certainly can’t miss my southern drawl. You have no idea how many times I was asked where I was from while we were living at Fort Campbell. When I answered Georgia, they always replied, “I figured it was Georgia or Alabama”.  The only not-so-southern-lady-ish of me is my many tattoos.

There is something about a southern woman that just screams “lady” and I want to raise Wendy that way.  And if you are ever interested in knowing more about how southern women are supposed to act, read any book by Ronda Rich. I just adore her books. And honestly, I would love to write more about my southern lifestyle right now, but I do have a baby with a colostomy bag, and that bag is coming off, as I speak. So maybe I’ll touch more on this later, but for now, I’ve got a bag to change.

Friday, July 6, 2012

I Am Not A Bad Parent For Only Wanting One Child

And if you want more than one, you are not a bad parent either.

I know this is dramatically different from another post, where I stated we would love to have a brother for Wendy, but after truly thinking about it, as of now, unless something dramatic changes, we are stopping at perfection.  Everyone seems so determined to be a multi-children family that I think they can sometimes lose sight of what is really important.

When Zed and I got married, I wanted three children. I wanted to be a stay-at-home mom and raise my babies. Everything changed when we had Wendy. Wendy takes up most of my time, just like all babies do. But after having Wendy, I began wondering if I wanted to bring a new baby into the world that would take up so much time, because no matter what I do, the amount of hours in a day are not going to change, and unless Wendy ends up with no developmental problems and goes to school, I am not going to have that quality bonding time with a new baby that I feel is so very important.

I’m writing this blog because many people I know are getting pregnant with their second or third child. And I don’t look down upon those people, because each family is different and each family needs to decide what is best for them. But I get tired of the pitying looks and people saying “Oh, you don’t want another baby?”, as if I am doing myself and my child a disservice by only having one. In fact, I see it as quite the opposite. I feel like I am doing Wendy a huge service by not having siblings for her. Zed and I want to give her everything she ever needs and try to give her anything she ever wants. I want her to be involved in as many activities as she’d like. If she is mentally and physically capable of driving and going to college, I want to be able to buy her a new car and send her to whatever school she wants to go to. If I had two, or more, children, we may not would be able to do those things. And honestly, financially, Zed and I are only prepared to handle one kid!

And again, I don’t want people to be defensive and think I am attacking families who chose to have more kids. My opinions may certainly be different if I didn’t have a special child and your opinion may be very different if you did have a special child. I am just putting this out there because it is statistically shown that only children are not any more spoiled or lonely than other children and they make friends just as easily as children with siblings. Besides, the trend of having only one kid is on the rise! It has gone from only 10% of families in 1976 to 18% of families in the United States today. Our culture says that the perfect family includes at least two children, but I am here to say, my daughter is pure perfection and she doesn’t need a sibling to complete our perfect little family. 

Monday, July 2, 2012

Another Birthday Surprise!

I wrote a children’s book for Wendy. It’s about disabled children and I made a storybook on Shutterfly.com. I just ordered it and I’m going to give it to her on her first birthday! If you have a child and want a copy of Wendy’s story, you can order one too!

This book was written by me, Jamie McLanahan. Please don’t steal the words to use as your own. You are more than welcome to order a copy of my photo book with Wendy’s photos,  but please don’t steal my ideas and story.

Shutterfly photo books offer a wide range of artful designs and embellishments to choose from.