Sunday, October 31, 2010

31 for 21, Day 31!!!!

31 for 21 has come to an end, my friends. This will be my final 31 for 21 post! I did it, I did it!! I wrote every day for the month of October to promote awareness about Down syndrome. I can’t think of a better way to end 31 for 21 than to tell you what happened while I was at Target today.
I was getting some groceries from Target earlier today. Normally, I would take Austin with me because he loves to get out! However, I decided it would be best if he stayed at home with Daddy since it was so close to his lunch time and I try to avoid meltdowns at all times. As I was coming out of the cracker aisle, I saw a woman pushing a basket. Inside of the basket was a beautiful little girl with an extra chromosome…just like my Austin. I’ve heard a lot of my friends in the Down syndrome community say that they’ve “stalked” or “followed” a family that has a child with Down syndrome around the store. Well, this was my first encounter and I’d like to think all of you veteran parents would be proud. I tried not to make it obvious, but when she went into the lunch meat section, so did I. I had to build up my courage, because you never know how people will react. Maybe she didn’t want to be talked to? As I was thinking about it…they left and turned down another aisle. Well, like a true stalker, I followed them. I walked down the aisle and said, “hi” to the little girl. She smiled her beautiful smile and said, “hi” back to me. Her mother looked at me and smiled and that’s when I said, “I have a son that’s beautiful just like your sweet daughter.” We talked for about 5 minutes. She said that her daughter’s name is Katie, but Katie was being shy and wasn’t feeling well due to an ear infection that she‘s getting over. Katie is 8 years old and is reading, writing, adding and subtracting with the best of them. She said that Katie does everything “typical” kids do, but at her own pace. She asked about Austin and of course, I gushed and bragged about what a blessing he is. It turns out Katie and Austin have the same Pediatric Cardiologist, Dr. K. It wasn’t too surprising to learn this because Dr. K is the best of the best! We talked for a while and it was so refreshing to see that Katie is doing most things that other 8 year olds are doing. Katie was so sweet and beautiful. I’m definitely glad that I took a chance and talked to them. I just wish I would’ve had Austin with me, but I know he’ll have the chance to meet several other kids and people with Down syndrome in the future.

The Buddy Walk is in ONE WEEK! We are so excited and pumped! Austin’s also having pictures taken the day before the Buddy Walk. I pray he’s in a great mood and cooperates. I’m sure our photographer will have a few tricks up her sleeve, at least I hope so.

I still be writing in my blog, but not every day. I think 31 for 21 has been helpful in reminding me to update my blog more often.

Happy Halloween. Be safe.

Blessings,
K

Saturday, October 30, 2010

31 for 21 Day 30


        

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace
-author unknown



Friday, October 29, 2010

31 for 21 Day 29 Let's Go To The Pumpkin Patch

Austin didn't want to look at the camera, but we still had fun. He had his first bite of a sugar free snow cone. He LOVED it, that's for sure. I think he'll appreciate the Pumpkin Patch a lot more next year. I love doing things like this with him. The Holidays are right around the corner and there will definitely be more activities for us to do together and as a family. I can't wait!

Austin went to the doctor today to get checked out. Dr. C is back! She said everything looks good and suspects that it's probably acid reflux. Well, I gave him prevacid this morning and what do you know? He's a totally different baby...back to his usual, happy self. We put him to bed and there were no tears and he went to sleep. Yay for no vomiting! You would think I'd be used to being thrown up on, but it still shocks and surprises me every time. No vomit=happy mommy.
31 for 21 is almost complete. :)







Thursday, October 28, 2010

31 for 21 Day 28

The Occupational Therapist came out to work with Austin today. This is the same OT that did Austin’s initial evaluation at 6 weeks to begin therapy. She’s going to be working with him twice a month. To say that I LOVE this therapist is an understatement. She’s completely amazing and has been working with children with Down syndrome for 30 years! She’s so resourceful and positive. I can tell she’s here because she wants to be, not for the money. Austin really likes her too, which is very important. He did so well in therapy today…better than he’s done to date! I have a feeling he’ll be sitting independently before we know it.
In not so hot news: Austin vomited again tonight. 3 nights in a row. This was different though because we didn’t put him in in his crib. After bath time, Austin always lies on Daddy while watching T.V on the couch. He started screaming and was inconsolable. I thought he wanted me, but even I couldn’t console him. Before I knew it, he vomited. I’m starting to think this isn’t a separation anxiety issue, but rather a stomach ache issue. What’s strange is that he eats Oatmeal, Chicken Apple baby food and Pear Mango baby food for dinner. He eats Oatmeal in the morning too, and that doesn’t make him sick. He also eats the same baby food for lunch. He doesn’t get upset or vomit after breakfast or lunch. So…why at night?
Austin has been in bed with us the past few nights, so I haven’t slept very well at all. I’m pretty sure I’ve had maybe 11 hours total of sleep in the past 72 hours. It reminds of the newborn stage when you rarely get more than 3 hours of sleep at a time. I’m going to attempt to move him to his crib tonight and hopefully get some sleep. Please pray that my little man feels better and that we figure out what's going on with him at night.


Blessings,
K

Wednesday, October 27, 2010

31 for 21, Day 27 Sleep, Sleep, Sleep

Austin’s bed time routine has worked very well for all us. It’s always the same routine each night so he knows what to expect. Just as I started to really enjoy sleep again…Austin has decided he doesn’t not want to sleep in his crib. It gets better…just wait. We swaddle him, kiss him goodnight and put him in bed. The past 2 nights, he’s screamed and cried so badly that he‘s made himself sick. He’s also vomited in bed the past 2 nights. It took less than 5 minutes for him to vomit tonight. We know his teeth are bothering him, but it seems as though he has severe separation anxiety from me. The second I pick him up, change his vomit soaked clothes and clean him up…he’s fine. When he’s sitting in Ryan’s lap watching T.V, he’s constantly reaching for me and looking over at me. Don’t get me wrong, I love that he loves me so much. However, I pray this is a phase. I don’t know what to do? The Ferber method worked well, but this is completely different. He’s not crying it out…he’s melting down to the point of vomiting. I might be strong enough to make it through the Ferber method (And that was only by the grace of God and my amazing husband.) However, I’m not strong enough to let him have a meltdown to the point of making himself sick.


Ryan and I prayed in his room before he went to bed. Yes, he threw up 10 minutes later...but we’re definitely going to continue praying in there.
If anyone has any tips or advice, please share! I’m desperate. I’m thinking about calling his doctor tomorrow…and she’ll probably think I’m crazy for calling about what I think is severe separation anxiety. I just don’t like that he’s vomiting every night.
Mommy let me play with wrapping paper. In case you can’t tell, I have an irrational fear of Austin lying on the carpet…and he rolls around the living room, so we have blankets down when he’s playing.
I was washing dishes and looked up and saw this...he's using his favorite stuffed puppy as a pillow. Who needs a pillow pet?


Mommy's letting me explore more and and more when it comes to self feeding. Oh, it was a mess...but he had fun. :)

Blessings,
K

Tuesday, October 26, 2010

31 for 21, Day 26

I’ve had a lot on my mind lately. Austin started out strong…like a long distance runner, he started off rather fast at first. However, he’s starting to slow down. I knew there would be delays. I told myself I would be prepared for them, but that doesn’t make it any easier. I need to stop reading those emails from the baby websites…”Your child at 8 months.” It’s a reminder that he doesn’t sit independently. And I need to start table food in the next month or so. Most of all, I need to stop dwelling on the things Austin hasn’t mastered yet and focus on what he HAS mastered.

The company that's making our Buddy Walk Team T-shirts emailed me a sample of our shirt today.


Isn't it awesome? HUGE props to my husband for designing such an awesome shirt.

I’m going to copy a fellow blogger and list my guilty pleasures:

1. True Crime. I love the books, T.V shows…all of it. Forensic Files is music to my ears. I miss the original Unsolved Mysteries.


2. Celebrity Gossip. Whether it’s on E, TMZ, Perezhilton.com or in People Magazine…I’m keeping up with it. I also know better than to believe EVERYTHING, but it doesn’t stop me from reading it.


3. Teen Mom and 16 and Pregnant on MTV. I know, I know…how old am I? Try as I might, I cannot turn away from these train wrecks.

4. Chocolate. There are few things can instantly take the edge off of stress, even it’s only a temporary fix.

Have a good night, all.
Blessings,
K

Monday, October 25, 2010

31 for 21, Day 25 Austin's Birth Story

I just realized I’ve never shared Austin’s birth story. Here it is:

My 38 week appointment was on a Tuesday. The physician assistant and I had discussed induction a few weeks earlier and I was all for it. Before I saw the my doctor, the physician assistant came in and gave me paperwork for a March 2nd induction. I KNEW I wasn’t going to make it another week. She said Dr. C doesn’t do inductions before 39 weeks….well, after Dr. C checked me she determined that it was imperative that she induce me the next day (Wednesday). I was already 100% effaced and 3 C.M. She was also concerned that Austin would be too big for me to deliver. I called my mom and dad and told them that tomorrow morning was going to be the day and to pack their bags. I pre-registered and had all the necessary blood work done at the hospital.


Fast forward to 4:00 that same afternoon. I had been having some mild cramping every 10-25 minutes, but it was very sporadic. I had told my friend, Katie, about my pains…but tried to play it off as “nothing.” Katie wasn’t so sure and suggested I call the doctor. It turns out Katie was right. I was in tears by 5:30 and decided to call my doctor. She said to head to labor and delivery. They hooked me up to the monitors and sure enough, I WAS IN LABOR Apparently, Austin had plans of his own and didn’t want to wait until the next day. I progressed fairly well. I was in a lot of pain by 9:00 and the nurse gave me some lovely drugs that helped ease the pain. By 2 A.M, I was 5 C.M and decided I was definitely ready for my epidural. The epidural didn’t really hurt. At least, not like I had imagined. I was able to sleep for a while and that was nice. By 6:00 A.M, I was 10 C.M and ready to push. I pushed for about 2 hours with no success. Things were starting to get pretty dramatic…I ripped off my blood pressure cuff and chunked it. It was annoying me. I was miserable and then I heard the monitor go crazy because the baby’s heartbeat was dropping. All of a sudden, 5 nurses came in my room and I knew something was wrong. The nurses were actually getting frustrated with me because I wouldn’t relax. My doctor was even frustrated. I’ll admit, I can be a drama queen and labor brought out that side of me. However, when you read further you’ll see that me acting like a brat was quite justified. My Doctor explained to me that I either had to push the baby out or she would have to perform a C-Section. I told her I wanted a C-Section. They immediately gave me a shot to stop my contractions. This shot made me shake uncontrollably. There wasn’t an operating room ready right away, so it took about 30 minutes to get me in there. The baby’s heartbeat continued to go up down. My mom said my doctor was watching the monitor and was very frustrated that the room wasn’t ready yet. FINALLY, the anesthesiologist gave me a spinal block, which gave me immediate relief. They took me to the operating room and prepped me for surgery. Ryan put on the sterile scrubs that they give all the dads in the operating room and sat next to my head. Austin was out in a matter of minutes and Ryan exclaimed, “He’s beautiful.” I kept asking if he “looked okay?” What I was really thinking is… “Does he have Down syndrome?”


I really wish I would’ve been able to hold him immediately, but of course, that’s not an option when you have a C-Section. After my doctor “put me back together”, she said I wouldn’t have been able to have him vaginally to begin with because he was face up. For once in my life, being a brat was justified. I was in recovery for what seemed like forever…and I had to be around the not so nice nurses. Ugh. Luckily, I was too drugged to care.
 
Once I was settled in my room, the baby nurses brought Austin to me. Holding him for the first time is something I can’t even begin to describe. Love at first sight doesn't begin to cover it. :)
On our way home from the hospital.

Sunday, October 24, 2010

31 for 21 Day 24, A Father's Love

Austin is exactly 8 months old today and Ryan decided it was time to "make an appearance" in our blog. He's been wanting to contribute a post for a while. I promised him I wouldn't correct any of his grammatical or spelling errors. Here are his true and beautiful words:


An entry from Daddy. Hello everyone, I figured it was about time to write a blog. Lets start from the beginning. When Kayla first got pregnant, it was unplanned, but I quickly found myself excited about the thought of being a dad. During the pregnancy, all I could think about was raising a great man. I wanted to raise a man that other men looked up to. I wanted to help him succeed in school where I screwed up. I wanted him to be a great athlete. I was going to raise him to go far in life. Much farther than I could go. As most parents, I wanted him to be better than me, to have a better life than me.





During the pregnancy, we did find out that there was a slight chance that Austin could have Down Syndrome. Being such a slight chance, I didn’t think much of it. I don’t guess I wanted to think much of it. He was my lil’ guy. It couldn’t be.


The day he was born was the happiest moment I’ve ever known. I have never felt that much joy as I did when he was finally here. He was beautiful. He was perfect. Then here the doctors came again with the talk of down syndrome. I couldn’t see it in him. He was perfect in my eyes. Then, after we finally got the test, we received the test results. I remember we had a friend over visiting, Jessi, and she was holding him when our dr. gave us the news. Austin does have down syndrome. I remember Jessi gave Austin to me and said I should hold him. I cried and just looked at him. I love him so much and all I could think was that I could never love him any less. Looking into his eyes, how could I ever tell him that something was wrong with him. He didn’t ask to be ‘different’.


During the following days, I did a lot of thinking. I felt I needed to re-think my approach on how I was going to raise him. I’m so blessed to have married Kayla because she immediately started doing research so she could educate us. During my re-think, if you will, I came to a humbling realization. All of the goals and dreams I had for Austin growing up, all the ones that I wasn’t sure what to think of now. I realized that MY hopes and goals for HIM didn’t matter. It wasn’t my job as his father to help him meet MY expectations. He wasn’t brought into this world to meet my goals or live out my unfinished dreams. My job as his father is to help him reach HIS goals, HIS dreams, to do everything I can to help him reach all of HIS potential. He deserves everything I can give him.


Eight months have gone by and now I look at quite a few things differently. First and foremost, I don’t view down syndrome as a bad thing. It’s not. He’s just such a wonderful child. You can’t look at him without having your heart warmed . He is full of so much love and sweetness. Anyone who has met him will tell you that. He is the biggest and most profound blessing I have ever been witness to in my life and his down syndrome is a part him. A good part. He has already taught me so much about life and love. He has the most wonderful soul and it shines. If love for a child can fill the hearts of the parents, my lil’ mans’ extra chromosome has caused our hearts to overflow. We have been told that he is lucky to have us as his parents but believe me, we’re the lucky ones. I love you lil’ Ozzy, happy eight months!


Saturday, October 23, 2010

31 for 21, Day 23 First Halloween

Introducing our little football player...


We went to a Fall/Halloween festival tonight and had a lot of fun. Austin loved showing off his costume.



Blessings,
K

Friday, October 22, 2010

31 for 21, Day 22

I was lying in bed last night when I suddenly remembered that I hadn't written a blog yet! Luckily, my iPad was sitting on my night stand. Yes, I'm determined to complete my 31 for 21 commitment.

Austin has been screaming since 6:00 and just fell asleep in daddy's arms. His teeth are making him miserable. The good news is: I can see where they are trying to pop through on the bottom row. Needless to say, I'm exhausted. No Down syndrome facts tonight. More later, my friends!

Oh yeah...
The Rangers are going to the world series!!!!!

Thursday, October 21, 2010

31 for 21, Day 21

It's hard to believe that in a few short days my baby will be 8 months old. Where has the time gone? I can still remember when Austin's pediatrician called and gave us the results of his karyotype in March. I knew immediately when I heard her voice on the other end that this was not going to be the news we were hoping for. Truthfully, I knew Austin had Down syndrome the minute he opened his eyes and looked into mine.

When my quad test came back as high risk for Down syndrome, I was worried how Ryan would react...would he still want our baby, even though there was a risk for Down syndrome? I felt like someone had stolen the joy and excitement of my pregnancy. I had a lot of thoughts...would I want to hold Austin? Would I want to share pictures of him? Ryan was incredibly supportive and we agreed that Down syndrome or not...Austin was meant to be ours and we would love him wholeheartedly. I now realize my feelings were completely normal. They seem irrational now that he's here.

It irritates me when people say,"you and your husband are so special because you were given a child with special needs." OR "You're so strong, I don't know if I would've been able to continue with the pregnancy." We are not special or extraordinary. We are normal people who didn't let a diagnosis change how much we love our son. Isn't that the definition of a parent? Unconditional love. I continued my pregnancy not knowing if my child had Down syndrome or not. Termination was never an option. I still can't understand why 90% of all babies diagnosed with Down syndrome prenatally are aborted. What would I say to Austin in Heaven when he asked me why I chose to end his life before he took his first breath? I'm thankful I'll never have to answer that question. Im not trying to be judgmental.I just wish these mothers were more informed about Down syndrome before choosing to terminate.

This post was all over the place tonight. Forgive me if the layout or font look a little off, I'm on my iPad.

Blessings,
K

Wednesday, October 20, 2010

Tuesday, October 19, 2010

31 for 21, Day 19

What impact does Down syndrome have on society?
Individuals with Down syndrome are becoming increasingly integrated into society and community organizations, such as school, health care systems, work forces, and social and recreational activities. Individuals with Down syndrome possess varying degrees of intellectual disabilities, from very mild to severe. Most people with Down syndrome have IQs in the mild to moderate range of intellectual disability.


Due to advances in medical technology, individuals with Down syndrome are living longer than ever before. In 1910, children with Down syndrome were expected to survive to age nine. With the discovery of antibiotics, the average survival age increased to 19 or 20. Now, with recent advancements in clinical treatment, most particularly corrective heart surgeries, as many as 80%of adults with Down syndrome reach age 60, and many live even longer.

In the United States, approximately 400,000 families have a child with Down syndrome, and about 5,000 babies with Down syndrome are born each year. More and more Americans will interact with individuals with this genetic condition, increasing the need for widespread public education and acceptance.             - Taken directly from NDSS

I'll leave you with a video of Austin. He's so fascinated by the lights on electronic devices. These lights are are really small, but for some reason he's intrigued.  For example, he loves the power light on the side of the computer and much to my dismay, the little light on the Play Station 3 controller.

Monday, October 18, 2010

31 for 21, Day 18

Down Syndrome fact of the day, taken from nads.org:
"Many children with Down syndrome have health complications beyond the usual childhood illnesses. Approximately 40% of the children have congenital heart defects. It is very important that an echocardiogram be performed on all newborns with Down syndrome in order to identify any serious cardiac problems that might be present. Some of the heart conditions require surgery while others only require careful monitoring. Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions. However, with appropriate medical care most children and adults with Down syndrome can lead healthy lives."


Austin has a VSD (hole in his heart) that we are currently "watching." If it doesn't close on its own by the time he's 2, he will need surgery to correct it. The VSD doesn't slow him down. It seems there's very little that does slow Austin down. I guess that would explain why I'm one tired Mommy. We have a lot of fun; it's all worth it. I wouldn't have it any other way.

Blessings,
K

Sunday, October 17, 2010

Let's talk Translocation 31 for 21 Day 17

A lot of people have asked me what it means to be a balanced carrier for Trisomy 21. This particular subject is complex, yet easy to comprehend once you get the main idea. I'll try my best to explain this in a way that won't have you yawning or worse, falling asleep. My husband is a balanced 21/22 carrier for Trisomy 21. Translocation Down syndrome is rare. The 21/22 translocation is very, very rare.

I often get the question, ”Does Down syndrome run in your family?” Of all people, I've been asked this exact question by a nurse! I told you I was going to put the rest all the misconceptions. This is one of those questions that is like nails on a chalkboard for me.  First of all, Down syndrome isn’t like twins, as it doesn’t typically “run” in families. 90-95% of the time it’s just an error in cell division. It just happens and we don’t know why. (refer my post a few days ago about the 3 different types of Down syndrome if you’re confused.) The only form that can be(but NOT ALWAYS) hereditary is Translocation Down Syndrome. In our case, it is hereditary. We didn’t know this prior to Austin’s birth.


I also get questions about my husband.
If he’s a balanced carrier, what’s wrong with him?


Other than the fact that he snores at night, nothing. In all seriousness, there is no way to tell if a person is a balanced carrier just by looking at them. Our genetic doctor suspected that Ryan was the carrier before the results came back because his family has a history of miscarriages. Balanced carriers are not associated with any phenotypic abnormalities. In other words, they are clinically normal. Some of their genetic material is “rearranged“ - so to speak. However, since there isn’t any extra genetic material, it doesn’t affect them. There is a risk of unbalanced gametes which leads to miscarriages. Moreover, if the translocation involves chromosome 21, there is a higher chance of having a child with Down syndrome. In our case, my husband’s translocation involved chromosome 21 and 22. Based on this specific translocation, we have an increased risk for miscarriage and our increased risk for Down syndrome in future pregnancies is 5% or 1:20.

Are you going to have more children?
Yes. Just one more. Due to our increased risks, we are going to go the in vitro fertilization route for our next pregnancy.

What other types of balanced Translocations are related to Down syndrome besides 21/22?
13/21, 14/21 and 15/21 are the most common. There is also a 21/21.

Random Fact: The 21/21 Translocation is the only balanced translocation where the child will have a 100% chance of Down syndrome.

The other types come with varying risks that have to do with whether the carrier is the mother or father. The risk for recurrence is higher when the mother is carrier.

Here is a karyotype (example) of a balanced male carrier. This particular male has the 14/21 balanced translocation. I tried to find a karyotype for the 21/22 translocation, but it’s extremely rare and I had no such luck. Look in the lower right corner. Notice how the total chromosome count is: 45. Most of us have 46 chromosomes. Remember: No extra genetic material = doesn't affect them.

I'm a total genetic nerd, I know.  Never in my life did I think I'd be writing about chromosomes and you know what? I like it.  
That's all. I hope you're all a little more informed. :)

Saturday, October 16, 2010

31 for 21, Day 16

I don’t do very well during the weekend when it comes to updating this blog . I’m determined to fulfill my 31 for 21 commitment though.

We bought Austin’s Halloween costume today. He looks ridiculously cute in it. We’ll unveil his costume later this month, so be on the lookout for pictures!

We went out to eat with friends tonight and Austin did so well at the restaurant. Any time Austin accompanies us to a restaurant, I always fear that we’ll be “that family.“ You know, the family who receives the dirty” why did you bring your screaming child to a restaurant” look. I’m sure we’ll eventually get that look, but so far Austin’s a very easy going baby when we’re out and about.


It’s late and I’m tired, so I’ll leave you with a video of Austin. I wish I could “bottle up” his sweet baby laugh and keep it forever. It doesn’t get much better than hearing a sweet baby laugh.


Friday, October 15, 2010

Thursday, October 14, 2010

A Beautiful Encounter 31 for 21, Day 14

Austin had his 6 month review with ECI today. We really need to work on the crawling position and sitting independently. My sweet child is stubborn. He gets that from me. The Occupational Therapist that did Austin’s first assessment when he began therapy is coming to visit us in 2 weeks. She and Austin’s ECI teacher will determine whether or not Austin will benefit from weekly therapy visits for a while. I hope she’s ready for Mr. Stubborn. I’m actually very excited that she will be the one working with him because she’s worked with children with Down syndrome for almost 30 years. She gave me a lot of inspiration and insight during that initial assessment.

I received an unexpected gift in the mail this evening that brought me to tears. I wish I could put into words how grateful and humbled I am by the generosity and kind words of these two beautiful people. You know who you are. From the bottom of our hearts, thank you.
It's time to eat!

Wednesday, October 13, 2010

Wordless Wednesday

Hello, I'm teething.

Tuesday, October 12, 2010

We're taking orders for Buddy Walk team t-shirts

The Buddy Walk will be here before we know it. My husband designed our AWESOME T-shirts for Austin’s Angels. We are currently taking orders for t-shirts. Our cost for the
t-shirts will be between $16-$19, depending on how many are ordered. All remaining proceeds from the shirts will go to Austin’s Angels Buddy Walk Team...which goes directly to The Down Syndrome Guild of Dallas.



Below is the design for our team T-shirt. The t-shirt itself will be blue (the same blue that's the background color in the design.) If you’re not local, I can ship. Shipping will be free. PLEASE SPECIFY what size(s) you want. Based on the minimum number of shirts we have to purchase, we won't be able to offer kid sizes this year.


*EDIT*
Okay, I have decided to take the pay pal button off because it doesn't work! I don't know what the deal is? If you have a pay pal account, you can pay for the shirts via pay pal by logging into your account and clicking on "send money". Please send payment to: kaylamajones@hotmail.com

You may send me your email address and I can email you an invoice. 

You may also pay by check/money order through the mail. Email me at the above email address if you're interested. We need all orders in by October 23rd. The shirts will arrive around the beginning of November.
Thank you for supporting The Down Syndrome Guild of Dallas, Austin's Angels and The Buddy Walk.

Monday, October 11, 2010

31 for 21 Day 11

There are three different types of Down Syndrome:



Standard Trisomy 21: This is also known as “nondisjunction.“ The extra chromosome 21 comes from either the egg or sperm cell. This is basically an error in cell division. Between 90% and 95% of all Down Syndrome is Standard Trisomy 21.

Translocation Trisomy 21 This form of Down syndrome is obviously close to my heart due to the fact that Austin has Translocation Trisomy 21. Translocation Trisomy 21 happens when a piece of chromosome 21 is located on another chromosome. The person with Translocation Trisomy 21 will have 46 chromosomes but will have the genetic material of 47 chromosomes. The person with Translocation Trisomy 21 will exhibit all the same characteristics of a person with Standard Trisomy 21 since they have three copies of chromosome 21. Translocation occurs between 3% and 5% of cases of Down Syndrome. This is the ONLY form of Down syndrome that his hereditary…which means it can be passed on to a child from a parent. A balanced translocation occurs when two pieces of chromosomes break off and switch places with each other. If all the chromosomal material is present, just rearranged – that is, switched places (translocated) - this person is "clinically normal" since all the chromosomal material needed is present.  There is no way to tell whether or not a person has one of these rearrangements unless you look at his or her blood to examine the chromosomes. In our case, my husband is a balanced carrier. 

Mosaic Trisomy 21: This is when a person has a mix of cells, some containing 46 chromosomes and some containing 47 chromosomes. This occurs either because:
The person received 46 chromosomes at fertilization but somewhere during early cell division the chromosome 21 cell pairs failed to split creating a cell with 47 chromosomes and a cell with 45 chromosomes. The cell with 45 chromosomes can not survive but the cell with 47 chromosomes will continue to divide. All cells that come from this cell will contain 47 chromosomes. OR The person received 47 chromosomes at fertilization but later during cell division the extra chromosome is lost. Mosaic Trisomy 21 occurs in 2% to 4% of cases of Down Syndrome. A person with Mosaic Down Syndrome may exhibit all, some, or none of the characteristics of Down Syndrome depending on the percent of cells carrying the extra chromosome and where these cells are located.

Sunday, October 10, 2010

31 for 21 Day 10

Excited to go on a shopping adventure with Mommy and Nana.


My parents came to visit us this weekend. They were originally going to come for Austin's surgery. However, they decided to come another time since the surgery was rescheduleled. On Thursday my mom decided that she couldn't wait until Thanksgiving to see Austin...so they drove up here on Friday. It was so nice having them here and Austin was spoiled (more than usual) by his Nana. It was also nice because Ryan and I were able to go out on a "date" for my birthday. We both missed our sweet baby, but we knew he was in good hands.
Austin and Nana

Austin telling Papa why he doesn't need to go to bed.

I know this month is supposed to be about advocating and blogging about Down syndrome. And don't get me wrong, a lot of these posts will be about Down syndrome. On the other hand, I feel that it's important for everyone to know that Down syndrome isn't what our life is all about. We have good and bad days...just like everyone else. Some days I'm reminded more than others that Austin has Down syndrome. The majority of the time I'm too busy being a mom.  :)

Austin and Mommy

And last, but not least...

Check out my babylegs!

Saturday, October 9, 2010

A video 31 for 21, day 9

This has always been  one of my favorite videos. Enjoy!


Friday, October 8, 2010

Oh, Happy Day 31 for 21, day 8

Today is my day of birth, birthday…what ever you want to call it. I remember when 26 seemed so far away that I couldn’t even picture myself being “that old.” It seems like the time goes by faster each year. Unfortunately, I’m still mistaken for a teenager on a regular basis. This might be flattering when I’m in my 30’s, but now? It’s anything but flattering. Don’t even get me started on the judgmental looks I receive from the “older” population when I’m pushing Austin in the stroller. It happens more often than you’d think. What else can you do but laugh? It really is funny.



That’s all for today.

Thursday, October 7, 2010

The Wisdom of a Duck, 31 for 21, Day 7

The weather has been AMAZING lately. I decided it was far too beautiful outside to waste the day away indoors. Austin and I decided to visit a park near our neighborhood this morning. He had a lot of fun. I pushed him on the swing, which he loved! We strolled around the park and he observed the people and of course, the dogs. Austin LOVES dogs! I can already tell he’ll be a dog/animal lover like his Daddy and I. After we finished playing, we strolled down to the giant pond and fed the ducks. Austin watched them intently as they devoured ate the bread we tossed out to them.

Ducks always remind me of my beloved Grandfather, “Papa.” Papa played golf every Saturday and Sunday. When he was finished playing golf, he’d go home and relax in his grey recliner while watching professional golf . There were very few events that could take the place of an important Golf Tournament on television. His nickname on the golf course was “Stud Duck.” I can’t recall the exact story behind the nickname. There’s a memorial on the golf course where he was a member. There’s also a respectable duck figurine next to it. When I was in second grade, I remember Papa sharing a story he had seen on the news. It was December and children were writing letters to Santa at school. One little girl with a disability asked Santa to please give her one day where no one made fun of her. Heartbreaking...just heartbreaking. After he shared this story, he reminded me of the importance of not making fun of others because they’re different. I don’t remember the specifics of our conversation that day, but I do know he felt strongly about what he was conveying to me. He passed away in 1995.

I know Papa would've loved Austin. His words on that December day mean so much more now than ever. I know Austin will face challenges because he‘s different. Let’s face it, kids can be cruel. I can feel my heart breaking each time I think about him having to deal with bullies. All kids will deal with some sort of bullying in their life. I don’t want Austin to be a target for bullies because he has a disability, yet I know it’s inevitable. You don’t even have to have a disability…you just have to be “different.” I just feel instinctively overprotective when it comes to Austin’s feelings. I think any parent can relate to that. Is it ridiculous to dream that bullying will be a thing of the past when Austin starts school? All I can do is pray and have faith.

Woohoo, week one is completed of 31 for 21! Many more to come. :)

Blessings,
K

Wednesday, October 6, 2010

With Love, With Patience and With Faith, 31 for 21 Day 6


...For the LORD loves the just and will not forsake his faithful ones...
- Psalm 37:28


...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint...
- Proverbs 14:29


...And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them...

-Romans 8:28



Tuesday, October 5, 2010

31 for 21: Day 5 Puppy Love

The past 24 hours have been crazy at our house. Austin isn't feeling too well and was up a lot last night. My poor little guy was so restless. We took him to the doctor and it looks like he has an ear infection. Hopefully his antibiotics will kick in soon.

Austin was crying so hard last night...to the point where he was inconsolable. Ryan and I took turns holding and trying to comfort him. He finally fell asleep in our bed around 8. Now, I normally don't allow Cagle (our dog) to be alone with Austin. It's not that I think Cagle would ever hurt him, because he's SO good with him. I guess I'm just a typical paranoid mom. We kept our bedroom door open while we were watching the news before bed and so we could hear Austin. Ryan and I encouraged Cagle to stay in the living room with us, but he refused. He just HAD to be at the foot of our bed, near Austin. He's so protective of "his boy." Austin loves Cagle...he's always reaching for him. He smiles and laughs when Cagle licks him.

                                                               Austin's about 2 weeks old in this picture.


Austin's 3 weeks old here.


                                                                           Always looking at his pup:)



No Down syndrome facts today. It's been a LONG day, my friends. I'm going to bed.
Blessings,
K



Monday, October 4, 2010

UP SYNDROME 31:21 day 4

I accept that my son has Down syndrome. I accept that he’s different and will accomplish milestones in “his time.” However, I don’t accept limitations. I refuse to put limitations on him. Am I being too optimistic? I don’t think so. MANY years ago, doctors recommended all babies born with Down syndrome be put in an institution. They didn’t believe they would ever walk, communicate, read, potty train and do things that “normal” children do.  I don’t think any of us would’ve learned to read or write without encouragement and guidance. Moreover, we probably wouldn’t have learned to crawl, sit, stand,walk and feed ourselves without the encouragement and guidance of our parents and caregivers.I don’t think any of us are capable of thriving without encouragement and most of all, LOVE. I refuse to accept that Austin won’t do all the things that typical children do. It might take him a little longer to do all those things that most of us take for granted, BUT HE WILL do them.


Down syndrome doesn’t come without struggles, that’s for sure. Life doesn’t come without struggles and parenting certainly doesn’t come without struggles. Down syndrome means that my son was born with an extra 21 chromosome. He has 3 instead of the typical 2. It’s named after John Langdon Down. He’s a British physician who discovered this Genetic disorder in 1866.


There’s nothing “down” about having a child with 47 chromosomes. Life is exactly what you choose to make of it. I could dwell on the fact that my son is different, but what good would that do any of us? So…it might take him longer to crawl and walk? So what? It might take him longer to learn and comprehend new things? Again, SO WHAT? We’ll work on the delays, but we won’t let the delays define who he is. Austin is so much more than that! I have a beautiful son, who is truly the light of my life. I see nothing “down” when I look at my him. In the beautiful documentary, Deedah, a mother asks her son with Down syndrome, “Jonathan, what kind of syndrome do you have?” Jonathan enthusiastically responds, “UP SYNDROME!”


That’s right! If only all of us could have a little piece of “Up syndrome”…the world would be a much better place.

Sunday, October 3, 2010

31 for 21: Day 3



I wish I had something interesting to write about, but it was quite an uneventful weekend. Austin and I went to a doctor appointment on Friday (for me). After the appointment we went shopping. Austin loves to stroll and look around at everything. We always enjoy going to the mall! I could probably spend a small fortune on baby clothes. I constantly have to remind myself that he’ll outgrow what I’m looking at in a month or so before deciding to buy it.




Okay, time for another fact about Down syndrome.



You’re so young. I thought only “older” women had babies with Down syndrome?
In my case, age isn’t relevant. In most cases of Down syndrome, age isn't relevant.

How can that be?
Researchers have established that the likelihood that a reproductive cell will contain an extra copy of chromosome 21 increases dramatically as a woman ages. Therefore, an older mother is more likely than a younger mother to have a baby with Down syndrome. However, of the total population, older mothers have fewer babies; about 75% of babies with Down syndrome are born to younger women because more younger women than older women have babies. Make sense?


Furthermore, Austin has a rare form of Down syndrome due to the fact that my husband is a balanced carrier. I will elaborate on the different forms of Down syndrome/Trisomy 21 in an upcoming post.

More tomorrow. :)


Blessings,
K

Saturday, October 2, 2010

Short and Sweet

I have a new layout! I wanted something new, unique and fun. I hired Merydwen, owner of My Lovely Designs to create a custom design. She’s so creative and her talent goes far beyond web design, be sure to check out  her website!

Today is the notorious Texas .vs. OU game in Dallas. I’m an Aggie, so I’m rooting for OU. Even though I’m an Aggie, I would typically root for Texas during this game. However, Ryan’s intense disgust for The Texas Longhorns has rubbed off on me during the past 4 years, so we’re both rooting for OU. Ryan and I were actually engaged during the Texas .vs. OU weekend of 2008. In front of several family members, he got down on one knee and proposed. I screamed like the “girly girl” that I am. Everyone in the restaurant started clapping. It was really sweet. I’m very lucky and blessed to be married to my best friend.
This is going to be short and sweet. I’ll leave you with a randon grammar lesson fact about
Down syndrome:

The proper way to write “DOWN SYNDROME” is:

Down syndrome…Capital D and lowercase s. It’s not “Down’s syndrome. It’s Down syndrome. If you’re referring to a group such as, “The Down Syndrome Guild ”, it would be appropriate to capitalize the “s” in Syndrome because you’re referring to an organization or foundation.
In conclusion:

Down’s syndrome
Down syndrome - correct.


Who cares if DOWN SYNDROME has the “proper” capitalization? Chances are, I may be in the minority because I DO care. Like it or not, the way you speak and write reflects greatly on you as a person. Think about it...you’re advocating something near and dear to your heart on paper or even better, through speaking. Will the person or group of people take you seriously if your grammar usage is incorrect?


Just a thought. I promise this will be the only mention of grammar during the month of October!



Friday, October 1, 2010

31 for 21




October has ALWAYS been my favorite month and for several reasons. It looks like I can add another reason to the list because October is also Down Syndrome Awareness Month! I’m participating in 31 for 21. I’m committed to writing here EVERY day in October for the sake of promoting awareness. As an advocate for Down syndrome, it’s very important that I make everyone around me more aware. Moreover, I want to put to rest all the misconceptions about Down syndrome. And believe me, there are a lot of misconceptions.

Austin’s surgery has been moved up, yet again. This has been quite an ordeal. The move up date is scheduled for December 3rd or December 10th? I was told one date, but it says another on paper? *makes mental note to call and find out for sure* Basically, Austin will receive testosterone injections monthly until his surgery. I trust his urologist and feel good about our plan.



We’re now using an exercise ball for therapy. I was so excited to use the ball and just knew Austin would have so much fun during therapy. Apparently, Mommy was wrong. Austin screamed like a banshee when his therapist put him on the ball for the first time and worked with him. I was shocked because this is the same child who loves (and I mean LOVES) to be “thrown” in the air. I think he just needed to ease into it, because he did fine when I put him on it and did some exercises. I don’t care how old are you, the giant exercise ball is fun.

I scheduled a photo shoot for November. We have a lovely and gifted photographer. I can’t wait! Some of the shots will have a Christmas theme and I’m hoping some of these will be used for our Christmas card/picture. I wanted to wait until he could sit up on his own before doing professional pictures, but I suppose that’s not so important. It’s not like our photographer can’t capture his cuteness because he doesn’t sit on his own, right?



Well, this is my FIRST 31 for 21 post. There will be MANY more to come and I hope none of you get sick of me.

Blessings,
K