Friday, December 11, 2009

Time Off :(

Okay after almost a month off I have returned and promise to keep up on the posting! Things are still very crazy and we have been doing so much back and forth between Columbus and Cincinnati and preparing for the holidays! I have a lot to catch you up on so be on the look out for many many posts in the next month :) Hope you all are well and have not given up on us!!

Monday, November 16, 2009

Big News!

In case you have been wondering why I have been such a slacker the past month and a half...... we bought a house! I didnt want to share the news until it was final, but we closed last Thursday. I have been so nervous and stressed out about the move mainly because we will be leaving our county so will be getting all new service providers for Leightyn. I have been doing endless research and as much preperation as possible, but now we know for sure when we will be moved and where, I still feel like I am starting from scratch. It really is amazing the differance in services between one county and another, but I knew this going in just from speaking to other parents in the local DS group when Leightyn was first born. My main priority was to make sure that she does not lose any services. Where we are moving is a smaller county then where we are now but the services seem to be close enough to the same. I am hoping since the providers have a smaller case load that the interactions will be more personal rather than just a number on a wait list or a family seen once a month for an hour. There are some areas where the resources are not quite what we had here but we are close enough to the "big" county that it should all work out. Off to get some packing done while the little one sleeps but I will keep you all updated on the move and how the transfer of her services goes. Look forward to much frustration in the beginning stories but hopefully the resolutions will be helpful to any other parent preparing for a move. One good thing that has come out of our move so far is that the county we are moving to is looking into educating local real estate agents on at least the basics of what services they have to offer familys. I had to do all of this research on my own, which I would have done anyways, but it would have been nice to know the big differances when looking at the homes in the area regarding school district and such and who better to know this info than the realtors. Thanks to a suggestion from us it will hopefully be a little easier for future movers to at least get the basic info about services offered and contact information so they can get all of their questions answered! Again I apologize for not posting as often lately but unfortunately it will probably take me a couple more weeks still to get back to a "normal" posting schedule!

Monday, November 9, 2009

Fall Fun

Scarecrow! Pretty Little Pumpkin

Can you find Leightyn?


Dressed up for the Pumpkin Show



I wanted to share some more of the pictures we captured the last couple of weeks but my computer is being slow for who knows what reason so I am only sharing a few more to come later! Enjoy!








Saturday, November 7, 2009

Leightyn has a Chomper!

Watch out, she bites! I am so happy to announce Leightyn has her very first tooth aka chomper. We have been working on it for a couple months now with lots of drooling and everything going into the mouth. Our poor OT has been trying to get Leightyn to pick small blocks up out of a bucket and drop them back in. Well the picking them up is going great but once she has them they go straight to her mouth lol! I am not entirely sure if she doesn't know how to drop it back in or if she just wants to chew on it so bad she doesn't care to drop it back in :) I hope to get a good pic of it very soon but it may have to be when she is sleeping. She is very proud of her newest addition to her mouth and has been constantly rubbing her tongue over it. I really have not even got a good look at it myself yet but I could feel it in her mouth so I know it is there! She refuses to stay still long enough and move her tongue out of the way for me to get a peek. That sucker is all hers and she is not sharing. On a totally unrelated note we had KFC for dinner tonight and I gave Lay Lay a bite of my biscuit with honey and of course she wanted another and another. Well little missy actually threw a kicking and screaming fit when after 5 bites there was no more left and then followed up with dirty looks and raspberries. It was the most adorable and hilarious thing I have ever experienced, I really wish I had captured it on camera. Man am I in trouble as she gets older!

Saturday, October 31, 2009

Do you smell something?


I will share more tomorrow but just couldnt wait to share my little stinker with everyone!

Big Girl Bath!

Now that Leightyn is able to sit up on her own we graduated from a baby bath tub to a tub seat. I wondered what she would think about the water and well I should have known she would love it! She spent 30 minutes in the water yesterday, as you can tell from her raisin toes in the picture! At first she was a little unsure when her splashing and kicking caused the water to get in her face but by then end she could care less and was cracking up at herself when she really got to kicking and splashing. The only downside is now I must figure out a way to keep her from trying to drink the water. I have a feeling I will be fighting with her over who needs a bubble bath now for the rest of my life, and I dont think I will be the one winning the relaxing bath any time soon!

Thursday, October 29, 2009

Tuesday, October 27, 2009

So True!

"The central struggle of parenthood is to let our hopes for our children outweigh our fears." (Ellen Goodman)

The Pleasant Valley Varsity Cheerleaders & The Spartan Sparkles: Persons of the Week - ABC News

This is one amazing group of young girls! I think there is great potential for this to expand nationwide especially at Leightyns future school ;) Check out the video and story, I just love these little glimpses of hope for the future!!



The Pleasant Valley Varsity Cheerleaders & The Spartan Sparkles: Persons of the Week - ABC News

Pumpkin Show!!


Fall is one of my favorite times of the year! Of course I take any opportunity I can to show off my little cutie. The Pumpkin Show is a local carnival and is a huge deal where I grew up. It is the one time of the year everyone is back in town to see old friends and of course eat all the yummy fair food. Last week on Thursday evening we went for dinner, On the Menu : Fried Veggies, Italian Sausage, and my all time fave Pumpkin Pizza!! I dressed Leightyn in a little pumpkin bunting I found at a yard sale this summer for 50 cents new with tags! I was so excited it still fit considering it was 3-6 Month size and she is almost a year old lol! One of the benefits that comes along with the DS and Heart Condition I guess, she is still my tiny baby, although each day I cannot believe how big she is getting, that is until someone with a "typical" child her age reminds me how small she is still! Everyone kept saying "Aww look at that little pumpkin", she was ADORABLE!! It felt good to get out and about especially since we will be pretty much confined to the house now flu season is here and the H1N1 is spreading like mad. We debated even having her out at the Pumpkin Show but I guess you cant live life in a complete bubble. I got me thinking back to last winter when Leightyn was not allowed out in public places and not even allowed around family or close friends unless they had received a flu shot. Even then we had to bombard them with sanitizer and hand washing requests when they came to the door, Dr's orders!! It was so hard since one of us had to be home with Leightyn at all times, meaning all jobs and errands were run by one parent or the other. You know you need to get out more when you and your husband are fighting over who's turn it is to go to the grocery store, trust me it happened! Although Leightyn has had her heart surgery and we do not need to be as cautious as last flu season, we will still be on high alert and need to take extra precaution. Thankfully that will not include $1500 Monthly shots this time around, as we were cleared by cardio to not receive Synagis for Leightyn this year. We did all get our flu shots last month and are waiting for the H1N1 vaccine to be widely available. Here's hoping for a healthy winter for our family!!

Tuesday, October 20, 2009

She can sit!!!!!

Today I was talking on the phone with my Mom and Leightyn started squeeling and laughing I turned to find her sitting up. She has in the past 2 weeks been able to sit for a minute or two at a time before crashing over but only when she was placed in the sitting position. I started saying YAY and Good Job and clapping to let her know it was exciting while holding back tears. I watched her then move several times in the next hour from her tummy to sitting and back down. It is so hard because although I see this as a great accomplishment her therapists see this as a bad habit that must be broken right away. Let me explain, in their minds there is a right and wrong way of doing almost every milestone sitting, crawling, walking, eating, drinking etc. Leightyn had just taught herself the "wrong" way to get into a sitting position. She was pulling her legs one to each side until she was in the splits and then using her hands and arms to push up to a sitting position from there. Now I know bad habits are hard to break, but how could I not be excited when she so obviously was? This is a constant battle I have with myself. I always try to ask "If Leightyn did not have down syndrome would I care if......." For example if....... she crawled by using both feet and both arms at the same time rather then right left right left arm leg arm leg or if she gets into the sitting position by doing a middle split first would anyone even care if she didn't have DS? If my answer is no and honestly it often is I just let things be and don't worry about it! I know there are many things I do that I have adapted to work for me and people could care less, all they know is I can do it, the "how" is insignificant. Here are some examples: I rest writing utensils on my 4th finger when I write, I do a mix of pick and peck and keeping hands over the keys when I type (I think there is a name for that but I blanking), and I snap by rubbing my 1st and 3rd fingers together over my folded down 2nd finger (easier to explain by showing you in person). Those are just 3 off of the top of my head. NO one has ever even attempted to get me to it the "right" way because it doesn't make a difference. Okay maybe my high school computer teacher tried to get me to do the typing thing correctly but gave up after a week of my complaining and proving over and over I was faster my way lol! I could care less the exact technique Leightyn uses, only that she has learned a new skill! That is not at all to say that I do not respect and listen to her therapists and their advice but I take it and use it when and how I see fit and best for Leightyn. I will not encourage her to continue getting into a sitting position this way and I will continue working with her on moving over one hip/leg or the other to get up and down the "right" way, but I will also not discourage her because to me the important thing is she can sit on her own regardless of the steps she takes to get there! I am so glad to have this place to announce my joy over Leightyn learning a bad habit lol! Especially since the people I talk to most about her developmental milestones are her therapists and I can assure you they will be no where near as enthused as I am about this one!!

Monday, October 19, 2009

New Beginnings: Part 3




I know I have been leaving a lot of time in between these posts describing the early days of Leightyns life. They are a lot of typing for one and it is hard to honestly go back to that place in my mind. There was so much going on I have to really think about what I was thinking and feeling at that time. It breaks my heart to say this but a lot of it was honestly such a blur, I wish I remembered every detail, but I honestly cannot.


The last post left off with me finally getting to hold my precious girl! We were moved to a much smaller post-partum room and I was able to watch the nurse give Leightyn her 1st bath right at my bedside. Once that was through they took her to the nursery to do some of the other necessary new baby stuff. She was gone for four hours but it seemed like an eternity. In that time I was able to scarf down two Turkey sandwich dinners. At least the nurse got a laugh in! After I finished the first meal she asked "do you felt better now that I had ate" and I said "well, NO I am still hungry", so she brought me in a second meal, I was definitely still eating like a pregnant lady, such a hard habit to break! Once they brought Leightyn back I was finally able to try breastfeeding. I had decided before having her I wanted to do it and was even more sure that was the right thing once we found out about her possible heart condition. Leightyn was having trouble maintaining her body temperature so we did a lot of kangaroo care, it felt good to be close to my baby again. Her nurse was very sweet and told me not to worry, she didn't hear a heart murmur or see some of the physical features typically found in children with Down Syndrome. She assured me many babies have all the physical features and end up not having DS, but also said she had saw some babies who had no obvious features who did. I liked that, encouraging but still honest! When they took Leightyn the next morning to draw blood for the testing her stats were dropping and they were having trouble getting enough blood so they moved her into the NICU and out of my arms reach. This was so hard, I wanted so bad to have my baby at my side, to hear her every noise and cry, to feed her on demand. I secretly hated the other Moms who did not keep their baby at their bedsides. How could someone voluntarily send their new baby to the nursery so they could rest when all I wanted was mine at my side even if it meant I never slept again. Now that I think of it I also hated the ones who kept their babies in their rooms near me, each time I heard a cry it was a reminder my baby was in another part of the hospital without her Mommy close by. A couple friends stopped by to visit and I didn't know what to say at the time, it could take weeks to get any official results back, so I said nothing about our concerns of Down Syndrome and only that the nurses had taken her to NICU and they were just monitoring her for now b/c of a possible heart problem. I think that was the hardest part really, knowing the "unknown", and waiting for them to tell me what deep down I already knew and had accepted. The first day I had them wheel me back and forth to the NICU as often as possible and would have moved right in down there if they would have let me, of course they wouldn't! I was able to continue trying to breastfeed so I made sure I was down there every 3 hours so we could keep trying. They told me it would be harder for Leightyn to do if she did have Down Syndrome but would help in the future with speech and oral motor development. I was determined to make it work and everyone was getting on me since I was practically getting no rest at all. Now we just had to wait for her test results to come back and for a cardiologist to come from the Children's Hospital the next day to look at her heart. More to come tomorrow! The pictures are of us holding her for the first time!

Sunday, October 18, 2009

Starting The Love Bug Project!

This project has taken off so quickly and not without a ton of help from some great friends new and old. Many of the items we will be including were donated from my friends at Wish Upon A Hero! This site is such an amazing place and serves as my daily reminder that there really are good people in this world. This is a site where people can come to make as well as grant wishes. Their motto is "No wish too Big, No hero too small"! I encourage anyone and everyone to check it out, make a wish, and grant a few. People wish for everything and anything both wants and needs. I really loved volunteering and when Leightyn was born I just didn't have the time or connections to do as much of it as I would like. Through this website I have been able to choose when and how to give back and it just gives you that good feeling and often has me in tears (happy sad tears). I have been able to provide a prom dress for a girl in Kentucky, a box of gifts and decor for a little girls 1st birthday, a crib set for a baby boy in Texas with a heart condition, and many many other smaller wishes like birthday cards, stickers, and other little pick me ups! I made a wish on the site for items to include in the tote bags we are making for The Love Bug Project and was so overwhelmed by the response. Thanks to my WUAH angels we have adorable customized totes, journals, blankets, hats, snacks, tea, and a copy of 4 different books and that is just the beginning! These lovely heroes encouraged me to seek donations and items elsewhere which has brought an amazing outpouring of love and support beyond my wildest dreams. I am so excited to be able to offer up these beautiful bags later this month. Still more details and pictures coming this week! To all of my sponsors, Thank You Thank You Thank You! This is just one small way for my family to provide hope and encouragement to family's in the early days of receiving a diagnosis of Down Syndrome. I can only help it will help shed a positive light on their thoughts and expectations for their loved ones future!

Saturday, October 17, 2009

The Love Bug Project!

So I believe I mentioned the project in passing previously but wanted to fill you all in a little bit more. I have been so blessed to have a great support system and wanted to find a way to give that to someone else. In honor of Down Syndrome Awareness Month we decided to make up some tote bags to leave at the local hospital with the request that they be given to mothers who are blessed with the birth of a child with Down Syndrome. When Leightyn was born we had no idea of her DS or heart problems until she was here. We had no information to go on except what the doctors and nurses told us and some info I had from being a psych major in college. The doctors and nurses mainly covered medical concerns which only makes sense. Unfortunately there are a lot of scary things to be concerned about in the beginning medically. The worst part I think is just the unknown. With these tote bags I hope to first remind them to celebrate the birth of their new baby. It is after all an amazing blessing, they have a baby first and foremost and should always remember that Down Syndrome is only a small part of this child and their future. I know I personally wish I took more time in those early days to just celebrate the birth and simply love on my baby. I now know many of my initial fears were unfounded. I also hope these tote bags shine a positive light on having an enhanced child! Last I hope to inspire others to give back in some small way in honor of Leightyn and their child. I have named the project The Little Leightyn Love Bug Project: Catch the love Bug! I call Leightyn my little love bug, she loves to cuddle! The rest of this week and weekend I will be posting and commenting on some of the items that will be included :) I will also be sharing with you the projects that have inspired me to give back! I really hope that the tote bags are something we can do every 6 months and I already have a grand idea for Leightyn's Birthday project next month. I cannot believe my baby will be one!

Friday, October 16, 2009

Happy Birthday Billy (Daddy)!

I do not know what I would do without my husband Billy, he is my rock and is always reminding me how much all my hard work has paid off for Leightyn. He works so hard so I can stay at home with Leightyn and the benefits of that are so obvious. Today is his birthday and after driving this morning for 2 hours from Cincy so we could be back in town in time for Leightyns therapy he went into work. Me and Leightyn made him a homemade card and some brownies with extra walnuts and we had plans to go to his favorite Mexican restaurant tonight as a family. Well as those of you with kids know plans are always changing. Miss Leightyn Decided to nap from 5 to 9 and Billy insisted we not wake her and just let her sleep so instead we had a $5 pizza from Dominoes! I cant wait until she is old enough to actually help me in making his cards, cake, and planning a "party"! Tomorrow is my little sisters birthday party and she is having a costume party so I will post pictures of Leightyn in her costume, she is one cute stinker ;) Billy I hope you know how much you mean to me and Lay Lay, you are the most amazing father and husband and I could not ask for anything more. I love you with all my heart!

Sunday, October 11, 2009

Awareness Needed

I have really been getting myself worked up lately about the lack of coverage and attention Down Syndrome is getting this month. Everywhere I go and everything I read is talking about October being Breast Cancer Awareness month and I have not seen a mention of DS anywhere except on some of the fellow Mommy blogs I follow. Do not get me wrong I strongly believe in creating awareness for all causes but I think it is so sad that one so close to my heart is being so overshadowed and overlooked. The NFL has been wearing pink all month in support of breast cancer, if these guys can wear pink you would think someone at some point would at least mention October is DS awareness month as well. Every sunday in the paper there are pink items for sale and yet I have to search long and hard online to find a single item referencing Down Syndrome. I have been working on some ideas I can get going here locally at least but really hope to have the time and support to get involved on a much bigger level next year now that I know there is such a minimal amount of coverage. I am hoping to contact some of the local papers and maybe get them to do a write up or maybe a letter to the editor before the end of the month? Me and Leightyn are also working on a project, The Little Leightyn Love Bug Project: Catch the Love Bug!, to be exact! I will post more on this tomorrow and in the near future, we are very excited to be able to do a few things to give back and can hopefully offer some encouragement and support to familys dealing with a new diagnosis. I will also keep everyone updated on some ways you can help us to spread awareness and maybe with that reduce some of the negative stigma associated with Down Syndrome. I know I say it all the time but to me Leightyn is like any other child and we treat her no differantly than we would have if she wasnt born with a little something extra!

Saturday, October 10, 2009

Hope for the future!


Just more proof our little angels can do anything with the support of friends, family, and the community! I truly believe the world is a good place and is still full of really good people. Get your tissues ready these stories are sure to inspire and bring the tears! I found this first story of a special homecoming queen when Leightyn was first born! Here is another similar story!

Friday, October 9, 2009

Going Back!

Tonight the high school I graduated from asked the alumni cheerleaders to come back and cheer for the homecoming game. Cheerleading was something I loved growing up and I was so excited for Billy and Leightyn to come and see me out there making a fool of myself. I was running late as usual but got my 12 minutes of fame when we finally arrived (we only cheered the 1st quarter). Leightyn got to wear a cheerleader outfit of her own passed down from my niece and she looked absolutely adorable! She was the star of the night, everyone wanted to know how she was doing as this was the first time many of them got to meet her! Again I did not have my camera but as soon as I can steal a picture from someone on facebook I will post it here. Bad Bad Mommy, I know I know! One of my old All Star Coaches made a comment which might have caused a break down in those first few days after Leightyns birth and diagnosis. "Bring her on into the gym as soon as she is ready, they start coming at 2 or 3 now! We would love to have her on the team!" she said. When I heard her comment I thought that is exactly right, when she gets old enough and has the clearance of her doctors to do gymnastics I will take her. I know how strong and determined Leightyn is and have no doubt she could excel as a cheerleader, IF SHE so chooses. She loves being the center of attention, can out yell anyone already, dances as soon as she hears music, and has developed a tremendous amount of leg strength. There are 2 gyms in the area that even have All Star Cheerleading teams for special needs children, Step One and Integrity. At the Buddy Walk this year there was a stop where High School Cheerleaders stood and cheered as the walkers went by and I noticed one of them had Down Syndrome as well. I hope that Leightyn will find something to love like I did cheering, and whatever that may be that she will be accepted and treated like any other member of the team/group. She has an amazing following and support group already and I know it will just continue to grow! Tonight felt just like it always did yelling at a crowd that is more interested in the game than anything the cheerleaders said or did but still lots of fun :) It was really great to be home, see old friends, and show off my family! The only draw back was I again felt old, which seems to be a recurring theme lately :0/

Common Bonds

Today we went to the ENT for Leightyns check up. While sitting in the waiting room before her appointment a little girl came in with her Mother. She scanned the room and left her Moms side, she came and sat down in the chair right beside me. She began to play peekaboo and tickle Leightyns little feet, which made her laugh out loud. Each time Leightyn laughed the little girl got the biggest smile and hid those precious almond shaped eyes again and again. Her Mom came over and sat beside her after getting her registered and apologized saying she was a baby magnet and told her to move to another seat and leave the baby alone. I told her there was no need to apologize and that she was jusst fine where she was. There were several other babies in that office today with empty seats beside them to choose, but no, she decided to sit in the chair beside me and Leightyn. This despite the fact my purse and diaper bag took up much of the room in it. I am so glad she did! She was adorable, polite, knew just what to do to make a baby smile, her speech was easily understood, and she knew what was about to happen in each scene of Shrek as it played on the TV. Oh, and she had Down Syndrome, deep down I know she chose to sit by me and Leightyn because she knew they had something very special in common. Maybe she could see it, or more likely just felt it. After waiting an hour and a half and still not seeing the ENT my patience ran out and we left without even seeing the doctor. I like to think I am strong and patient but today I gave in. I know while we were there in that waiting room I was sent a messenger so it was still a good day and we did what we needed to do there! I hope that when this little girl sees a baby to play with in the future that her presence is as welcome and appreciated as it was by me!

Wednesday, October 7, 2009

Tuesday, October 6, 2009

Whats in a name?

L- Loving
E- Energetic
I- Independant
G- Growing Too fast
H- Hard Working
T- Toothless
Y- You Just Want to Squeeze Her
N- Noisy

D-Determined
E- Easy Going
N- Normal Baby
I- Inspirational
S- Special
E- Exciting

T- Troublemaker
O- Only Child
L- Little Girl
L- Loves Music
E- Extra 21st Chromosome
T- Tiring
T- Trendy

Monday, October 5, 2009

New Beginnings: Part 2




Are you thinking what I'm Thinking?

Leightyn was born at 2:18 AM after 3 easy pushes. The doctor laid her on my chest and she was the most beautiful thing I had ever laid eyes on. Billy cut the cord and when he did the Doctor was saying something about it being really thin and gristly, and explaining how they normally are thicker and have a plump jelly like covering. Thinking back now I guess this should have been the first sign that things were going to be a little different than we had imagined. They took Leightyn after Billy cut the cord because she had not started breathing or cried yet, from here things get a little crazy and blurred. Next they were calling for NICU (neonatal intensive care) and respiratory STAT. Suddenly about 10 nurses and doctors came running into the room. I was obviously a little confused and really really scared. All I could do was squeeze my Moms hand and I told Billy to go over there and be with our baby. They were using the bag to breath for her, they kept tapping on her and talking to her, saying "come on", and timing everything. I heard one of the nurses say "Are you thinking what I'm Thinking?". All I was thinking when I heard this was that my baby didn't make it. I probably watch too much Greys Anatomy but it felt like one of those whispered moments between the doctors right before they deliver really bad news or call time on a patient. Little did I know Leightyn had started breathing on her own and right before they were going to rush her out of room. It turns out what they were thinking was that she had Down Syndrome. My nurse came over to me and said, "your daughter has some of the characteristics of a baby with Down Syndrome", plain and simple that was all she said. They got Leightyn wiped down, weighed (6 lbs), measured (19 1/2 in), and bundled before finally handing her to me. When I held her this time I studied her face and I knew, she had those beautiful almond shaped eyes. They told us they would need to do some blood tests to find out for sure, I hoped they would come back normal, but deep down I already knew they would not. I did not cry right away I was determined to stay strong for my baby, my husband, and family at least for a few more hours. I really didn't know what to think or feel at first, I guess I was in shock. I never imagined when I walked into the hospital that evening that I would be delivering anything but a "perfect" and healthy baby girl. To be continued..........

Leightyn was good at keeping secrets! We had to do more than one ultrasound to find out the sex b/c she refused to get in a good position for us! This was killing me since Billy would not let me shop for anything until we knew what we were having :) I did not have the prenatal testing done because the results were not going to change our mind about having our baby, we were going to love her no matter what!! Since I was only 24, and none of my ultrasounds or appointments showed anything to be concerned about, the doctor didn't press the issue. We had no idea Leightyn would be chromosomally enhanced!

Here are some basic FACTS about Down Syndrome!

Sunday, October 4, 2009

Can You Tell?

Can You Tell?

Many times I wonder
As I go throughout the day,
Can you tell I'm special,
When you look my way?

Can you tell I'm different,
When you look into my eyes,
And see the tiny Brushfield spots,
That sparkle when I smile?

When you see my chubby little hands,
The line so deep and long,
Can you tell that I’m unique,
When I sign to you in song?

Can you tell by looking at my face,
So sweet and full of joy,
I’m as precious as they come,
Mommy’s Little Boy?

And Daddy’s Little Girl When she twirls all around,
Can you tell when she's dancing,
In her ballerina gown?

Can you tell by my expressions,
By the way my body moves,
By the little things that differ,
From the children known to you?

Can you tell that I’m a blessing,
Sent from up above,
To live here on this earth with you,
And fill your world with love?

Can you tell that I have feelings,
The same as all of you,
Sometimes I laugh,
sometimes I cry,
My heart is human, too.

Can you tell that I am worthy?
Do you see me less than whole?
I hope you can appreciate,
My selfless perfect soul.

My love is unconditional,
Loyal ‘til the end.
Can you tell that I am capable,
Of being your best friend?

Can you tell that just like other kids,
I love to run and play.
But, at times I need to do these things, In my special way.

Don’t judge from my appearance,
There are differences, it’s true.
But, when you think about it,
Can you tell I’m just like you?

by Becky S. Bowen

I found this in the etsy profile of a Mother with a child who has Down Syndrome!

Saturday, October 3, 2009

They are the happiest/sweetest little kids!

We had big plans for the day so I was a little worried when I remembered (last night) that we were supposed to go to the flu shot clinic this morning for Leightyn's second dose of the flu vaccine. I was quite impressed with the set up there since we were in and out in 10 minutes max and got free coffee and Krispy Kreme donuts to boot. I got to hold Leightyn while she got her shot and although she made a weird face for a few seconds she did not cry at all :) Poor baby has been poked so many times it doesn't even phase her anymore. She came home ate a full bottle and napped before we headed to lunch.
We met my best friend at House of Japan a birthday tradition. It is a Japanese Steakhouse where they cook your food in front of you. Leightyn was a little unsure what to think of the huge flame and the heat when the chef lit the cook surface but she wasn't bothered at all by the clanking of his utensils as he tossed them into the air doing tricks. This was surprising since noises like that have been known to startle or scare her in the past. She spent lunch first eating herself, then cooing/talking to Tiffany, and she was a huge fan of the orange sherbet they bring out for dessert. I somehow managed to lose one of Lay Lay's new little fall outfits from her bag, but other than that lunch was great and I was more than full when we left!
We went back home so Leightyn could get another nap and bottle in before heading out to meet Tiff again for The Gallery Hop , another birthday tradition. I considered getting a sitter for Leightyn since we had already had a busy day and weren't supposed to meet Tiff until 6. We decided to give taking her along a try. I love the Gallery hope with all the people watching, music, and beautiful art and was hoping she would like it too! The Fall weather has really set in around here so we bundled Leightyn in layers and put her cute little dog hat on her. She loves music so was a happy happy baby as we walked up and down the streets with all the live musicians out on the sidewalk. I even managed to push the huge stroller in and out of several of the shops and galleries without having to accidentally purchase anything which was a huge feat! That area is so far from being handicap (stroller) accessible, the side walks are horrible, shop doors have huge steps to get into them, and the shops and aisles are so tiny, not to mention the large crowds on nights like tonight making it even more of a challenge. Nest time I think we will try the baby carrier so we can just strap her to my belly or Billy's back!
We ended the night with some more food, Z Pizza! Honestly I was hoping for something a little more fun since one of the best parts about the Short North area is its unique eateries. However with the baby this seemed the easiest and least crowded option and was right on our way back to the car. To my shock it had its own uniqueness, everything is made with fresh organic ingredients and the pizza is cooked on bricks over fire. There were the classics as well as some yummy twists, I had the BBQ Chicken, Billy had the trusty pepp and chz, Tiff went with the Greek, and Leightyn even had a piece of crust. The pizza not only tasted amazing but it was super affordable our bill was $8.95 for 2 large slices of pizza, a beer, and a coke! The Short North is the only Z Pizza location in Ohio but there were several in other states and it is definitely somewhere we will be frequenting! I love eating so this is a topic you will probably hear a lot about!
Now to my point of the day! People were talking about Leightyn being a doll at lunch and then tonight all people kept saying was how cute that baby in that hat is, how happy that baby is, and how awake and alert that baby is at this late hour (and no it really wasn't THAT late, it was only 9 when we left for home). It got me thinking about something I am sure every parent of a child with Down Syndrome has heard, "They are the happiest/sweetest little kids!" or some similar variation of that. It is one of those things people always say to you when they find out you have a baby with DS. I know they have the best of intentions and really think they hope it will somehow make you feel better about the diagnosis. This is one of the biggest myths about Down Syndrome. Okay, today yes, Leightyn was the happiest sweetest little baby, but that is not always the case. I will prove that in another post here this month I am sure. Leightyn's good mood tonight had nothing to do with her diagnosis and a whole lot to do with her taking 2 long naps, and eating all 4 of her 8 oz bottles as well as cereal, a fruit, and veggie. Then add in some good music, lots of people, lights, plus new surroundings to check out and you get one happy baby! I wonder when these people make these comments do they know she has DS? Can they tell by looking at her? If they know is her very happy mood tonight feeding into their assumption that our children really are sweet and happy all the time? The answer to those questions I will never know. One thing I do know is that Leightyn like any baby in this world has both good days and bad. She definitely makes being a Mommy easy most of the time and really is an easygoing and happy person but that, I am sure, has nothing to do with Down Syndrome, and everything to do with the fact she is my daughter. She must get that from me :)

Friday, October 2, 2009

Leightyn Crawls!!!!

Today is my 25th Birthday and I do not think I could have received a better present from Leightyn. We have never really worked on the motions of crawling, so far mostly the strength building so she could get on all fours. At therapy this morning her PT was working with her on using one leg at a time to move forward. I sat on the floor in front of them holding a pinwheel and her therapist alternated bending a leg and letting Leightyn push off of it. She was able to get all the way to me doing this and seemed very proud of herself for doing it. Her therapist asked her to please say mamamama for me today, her current vocabulary consists of raspberries and dadadadad! Leightyn decided to do something even better! When we got home this afternoon she saw a small piece of paper on the floor and I could see she had her eye on it. I watched in awe as she popped up onto all fours and lunged forward as I was heading over to grab it before she could. I was stopped in my tracks as she did this several more times until she had the prize in her hands!! I am so proud of my baby girl! I had to fight back the tears, I have the utmost faith in Leightyn and her abilities and I know she will meet every milestone on her own time, but I am so glad she picked today for this one. At the DSACO meeting on Monday the father of one of the younger kids was watching Leightyn play on the floor and wiggle and he said he hopes that his daughter is doing as much as Leightyn when she is that age. It really touched me for some reason, maybe because I have had that same hope for Leightyn when seeing the other children at the monthly meetings, events, and reading the blogs I follow. As they reach each milestone and accomplishment they are just one step closer to the next! Leightyn has always done well with new skills after we help her figure out what to do with her body she is quick to pick up on it, watch out world! Time to really get on that baby proofing! So she cant make a liar out of me by not showing off when everyone else is around here is a video we got of her after Daddy's remote, Enjoy!



video

Thursday, October 1, 2009

October is Down Syndrome Awareness Month!




I am joining in the 31 for 21 so I will be writing 31 new posts in the Month of October to Celebrate my daughter Leightyn and everyone else who was born with designer genes! I hope to give some facts, dispel myths, and most importantly share stories of hope! I am only ten months into this journey that has become my crazy beautiful life and I am so glad to be able to share it with you all. For tonight a picture of my inspiration!

Wednesday, September 30, 2009

Monday, September 28, 2009

The Beginning!

We were so happy to be expecting our first child, a girl, Leightyn Denise! I had a perfect pregnancy with little to no morning sickness, I got sick once, and everything looked great on all ultrasounds and Non Stress tests! On November 29, 2008 we had just returned from visiting family in Wadsworth for thanksgiving and made plans to go to the Zoo to see the Wildlights Christmas lighting display! I was set to be induced on November 4 (a week before my due date) due to some complications with high blood pressure in the last 2 weeks of my pregnancy so I was happy to get out of the house one last time before baby and spend time with my Mom, Sister, and Niece (hubby too)! We were planning on meeting about 5:30 so when I was getting ready around 4:00 I thought my water may have broke, but since this was my first baby and no one else in my family had their water break naturally, I just wasn’t sure. I felt great though so I decided we should go ahead and go to the Zoo and leave later if need be or if I felt anything. The lights were beautiful as always and my little sister got to try ice skating, I drank lots of yummy hot chocolate and walked around until about 9:30. I wanted to go to the last area and see if we could see any monkeys (still feeling great) but everyone else was getting chilly and the little ones were getting tired so we left. On our way to the car I felt my first little pain, then again and again but nothing too bothersome. We dropped my family back off to their car with the promise to head to the hospital as soon as we stopped at the house for my bag. Luckily my best friend had talked me into throwing some things in there the week before knowing I am such a procrastinator! When we got to the hospital they said my water had definitely broke and I was between 5-6 cm, so they got me a room, this was around 11:30. Once my nurse got me all set up in the room she went to lunch, thinking as we did, that there was still plenty of time. Apparently the first ones usually take a while! Around midnight I was feeling intense pain for the first time and called for my nurse, since she was still at break another one came in and called for an epidural. I had planned on doing it natural and still would have had I known I was already at 10cm when they came to put it in around 12:30. I guess I had the mind set of everyone else, and was thinking I would still need to be there a while and knew I could not take the pain for what I thought would be hours still. Once they checked me and said 10 cm it was a rush to call the doctor and family to tell them it was going to be a little sooner than everyone thought! Thanks to the epidural I was no longer in pain and waiting patiently for the doctor to arrive, luckily my family and best friend arrived just before the doctor on call and were all able to stay and see our little princess arrive! More to come later..........

Friday, September 25, 2009

This blog is something that I have wanted to do since Leightyn was born and I have finally gotten around to setting it up. In all honestly I had no idea it would be so easy to get started, now it is just finding the words to keep filling it! I hope to use this blog to share our Little Leightyn with the World and for friends to follow The Love Bug Project. Many of the posts will talk about Down Syndrome because Leightyn happens to be chromosomally enhanced but she is first and foremost our baby simple as that. Yes she may be special but what little girl isnt in the eyes of those that love her? The next post I am working on is the very very long, short version of our first nine months with Leightyn and following that will be more details on The Love Bug Project and the people who inspired us! Since this post is not of much interest alone I have for you yet another picture of Miss Leightyn, enjoy!





I can definately see this as a "Spit Happens" poster!

Tuesday, September 22, 2009

New Beginnings!

This blog will be a work in progress for the first few weeks (months, years, decades lol). I am new to the blog world and hope to use this to share the stories of my precious princess Leightyn and our family, the good, the bad, the ugly, the lovely, and indifferant. Please check back often to see what we are up to!