Let's Play Catch Up

I’ll go ahead and state the obvious: I haven’t updated in over a month. This time of year is always busy. Not to mention, we’re really busy with a crazy schedule to begin with. Did I mention that Austin has had a sinus infection for OVER a month? My poor little guy just can’t seem to shake these sinus issues. While I love Fall/Winter time…I don’t love the yucky illnesses that seem to be more prevalent at this time of year.

We had a blessed Thanksgiving and Christmas. Austin enjoyed tearing into his presents…He skyped with Nana while opening presents. However, he was more interested in looking at Nana than opening his presents. He’s becoming more independent and opinionated each day…very toddler like;-)  He constantly amazes me; he’s so smart. I know I’m biased, but it’s the little things like: separating his pretzels from his crackers and making sure to give the dog the pretzels because they aren’t his favorite… he prefers the crackers. Mastering the shape sorter. Making the “vroom” sound when he’s playing with his cars.  Giving his baby doll a (pretend) bottle and patting her to sleep. Putting his phone to his ear…we are so blessed to have such an amazing little boy.

He’s WALKING more and more. He’s capable of walking, but he prefers to crawl…because crawling is what he’s most comfortable doing. Not to mention, he’s really fast.

We get a break from Therapy this week (they are closed for the holidays)…I must admit, it’s nice to have a little break and focus on just having fun with Austin. We go to the ENT later this week to see what’s going on with Austin’s sinuses.

Here’s a video of Austin walking…

And talking:

And here are some pictures to catch you up:

Austin and his best buddy, Grayson.

It was definitely time for our second haircut

 

The After Picture:

Skyping with Nana on Christmas Day!

Merry Christmas!

If You Only Knew

I never knew I could love someone so much. Fear and uncertainty stopped my husband and I in our tracks on that March day back in 2010 when we received the results from the karyotype. I remember looking down at my beautiful two and a half week old baby boy and knowing that I could never tell him that there was something wrong with him.

I love how our photographer captured his beautiful features and personality. And these pictures are just a tiny piece of how wonderful this little boy is. He’s silly, sweet, funny, determined, feisty and full of personality.  I cannot ( and would never want to) imagine him being anyone else but who he is, which is why I wouldn’t change anything about Austin.

It’s easy to look at a picture and think that he or she doesn’t fit society’s idea of what one should look like.  I pity those whom are that shallow and superficial. Oh, if you only knew…how thankful I am to God for blessing us with a child that has Down syndrome. And you’ll never understand it unless you’ve experienced having the pleasure of truly knowing an individual with Down syndrome.

It’s no secret that there are extra challenges that come with Down syndrome. We have a crazy schedule that entails therapy 4 times a week, extra appointments with specialists and doctors. Yet, I wouldn’t change a thing. Not. One. Thing. At the end of the day, I'm the one who is blessed to have the privilege of being this little guy’s mom.

If you only knew...

Disclaimer-PICTURES WERE TAKEN BY OUR LOVELY, GIFTED AND BRILLIANT PHOTOGRAPHER, ASHLEY HOWLAND, OWNER OF ASHLEY HOWLAND PHOTOGRAPHY
 

Falling Back

Did everyone remember to set the clocks back an hour? I used to take full advantage of that extra hour of sleep when “falling backwards.” Believe it or not, I’m not bothered by not sleeping in an extra hour these days. Waking up with Austin in the morning is the best! He’s definitely a morning person. I wonder where he gets that…Maybe his dad? He certainly doesn’t get it from me. It’s no big secret that I’m not a morning person. However, if I have to wake up at the crack of dawn…there’s no better person to wake up with than my happy little guy.


Austin had a runny nose and cough while we were in the hospital. I was concerned and mentioned it to the doctors numerous times, but they brushed it off…saying it was probably “viral.” While it did slightly bother me, I understand that they (the doctors at the hospital) don’t know Austin (or me). Therefore, it’s probably difficult to know if I’m just a mom that’s overreacting or if my concerns are truly warranted. That saying…
”Mother Knows Best” is true. Austin had a follow up appointment with Dr. C on Friday and sure enough, his runny nose had turned into a sinus infection and his cough was diagnosed as croup. His antibiotic has helped immensely and it's a 14-day antibiotic. He’s been so much happier and content now that his tummy issues are under control that having a sinus infection and croup have been a piece of cake! Austin’s test results were still not available and Dr. C is going to check on them for us. So, I should have news this week (hopefully!)

The Buddy Walk is ONE week away! If you’d like to donate, please click on the “feeling charitable” tab on my blog. All donations go directly to The Down Syndrome Guild of Dallas. We’d love to have you walk with us and you don’t have to donate to walk. Just let me know so I can give you more information. The Buddy Walk is a lot of fun and there are a lot of fun activities for children of all ages. In a way, I feel a little guilty because I spent a lot more time last year preparing for the Buddy Walk. Then again, I HAD more time to do fun stuff like that. I also raised a lot more money last year. I know it isn’t all about that, but I feel giving back to the Down Syndrome Guild of Dallas is so important. I wasn’t as busy last year and Austin wasn’t nearly as active. Next year, I’ll start fundraising for the Buddy Walk MUCH earlier. More than anything, I always want to raise awareness.

Time to fold laundry and get ready for a new week!

Halloween Happenings & Fun At The Park

November already?

Austin is still going strong and doing well. The changes that we've made diet wise seem to be working well. The test results should be in at the end of the week. We have a follow up appointment with Dr. C on Friday...so perhaps we'll receive the results then?

No, he doesn't use this carseat as he's obviously way TOO big for it. Miss T uses it when she's here...apparently, the infant carseat and bumbo chair are his new favorite "toys."

We didn't really have any plans for Halloween. I planned on taking Austin and Miss T to the pumpkin patch, but we were never able to go because Austin was always so sick. Our friends, Abbie, Rick and Baby Noah (I've written about them before, they have an awesome website that I mentioned a few weeks ago- check it out) invited us to go trick-or-treating with them. It's nice to have friends that live so close...they literally live a minute away from us.  Austin and Noah scored a lot of candy for their parents. I haven't let Austin eat candy, although I'm certain he'd enjoy it. He's a little young. For now, I'm perfectly okay with him not knowing what candy is (or how good it tastes.) Not to mention, he's been eating ridiculously healthy foods lately, which makes me a very happy Mommy! :)

Baby Noah as a Lion and Austin as Superman.

November is going to be busy! I have a baby shower to go to for our near and dear friend, Amy. Amy is the one who gave me an amazing baby shower for Austin. The next weekend is Miss T's 1st birthday and THE BUDDY WALK! I have to squeeze in Christmas pictures for our Christmas cards too.  I'm in the middle of scheduling a photo with our fabulous photographer. Thank God she's flexible.

For those whom don't know, Miss T is a sweet little girl that hangs out with us during the week...and we also take her to private therapy. Austin and Miss T have busy schedules and they handle it so well. It's rare that we have a day that doesn't involve therapy. I took advantage of that rarity today and decided to take them to the park. We fed the ducks, read a few books and even sang a few songs.

Life is beautiful and good.



Our Hospital Stay

My mommy instincts were unfortunately correct. I KNEW something was not right. I knew it and it scared me. We were sent back to the ER on Tuesday and thankfully our ER Doctor this time was Abbie. Abbie and her son, Noah are friends that we met at Mommy and Me. While Abbie is an amazing Pediatrician, she’s also a mom to a child with Down syndrome. Therefore, she truly understands all of the medical problems that can arise in a child with Down syndrome.

Austin was doing okay on Monday morning, but then the vomiting started again around noon. Dr. C sent another referral to Children’s on Tuesday and we were on our way. Austin had another xray and sure enough, he was still severely constipated. Due to low muscle tone, children with DS are more likely to battle constipation. They are also more likely to have Hirschsprung’s disease . While Austin does not appear to have any abnormalities that would point to Hirschsprung’s, it’s still a possibility. More on that later.

Abbie explained to me that there’s a procedure that will clean Austin out. However, he would need to be admitted. This procedure also entailed a NG tube. They had to insert a tube through the nose, past the throat and down into the stomach. The process of holding Austin down to insert the tube was traumatizing. My poor baby vomited all over everyone, his nose was bleeding. Finally, after the tube was in, we went to Radiology for an xray to make sure the tube was inserted correctly. Right as we were going through the door Austin pulled out his tube. I can’t blame him, but still…they went through so much to get that tube in and now he would have to go through it yet again. The ER nurse (bless her heart) didn’t realize that Austin’s skin was so sensitive (especially his cheeks). They have to tape the tube to his face. Well, when she tried to pull the tape off his cheeks were really irritated. THEN, Austin tried to rip the tape off, which resulted in his cheek bleeding like crazy. He looked really bad and was really upset. Abbie thought it would be best to give him a little break and came to the conclusion that we would be transferred to a hospital room and they would reinsert the tube later that night.

I was nervous to leave Abbie’s area(The ER), but she said the doctor on our floor was really good. She was right. Dr. G made me feel at ease and decided that they would take Austin to the procedure room to insert the tube and I did not have to be there. That way, Austin would not associate his hospital room with the trauma and he would be brought back to Mommy and feel safe. THANK GOD! They taped diapers over Austin’s hands to keep him from pulling out his tube. He did well with the clean out procedure, which took about a full 24 hours. We saw numerous doctors, all of which were amazing! I can’t say enough positive things about the staff at Children’s Medical Center on C6! One of the doctors felt that Hirschsprung’s was a possibility…and if anything, we could rule it out. She also felt it would be important to test for Celiac Disease and re-test his thyroid. Celiac Disease and thryroid testing are done by a blood test. However, the Hirschsprung’s test is much more invasive and involves a biopsy. Austin had his biopsy in the procedure room with the GI department on Thursday. The results for his thyroid came back normal. The results for Celiac Disease and Hirschsprung’s will take a little longer to come back. I’m praying this was just due to severe constipation and that Austin does not have any of these diseases.

HE'S SO HAPPY TO BE HOME!!

As most of you know, Austin is a very selective eater. Therefore, I used to give him A LOT of milk and Pediasure. Apparently, milk causes a lot of constipation. I was more worried with the amount of calories he was taking in that it never occurred to me that MILK in excess causes constipation. The doctors ordered him to be completely off of Milk and Cheese (not that he ate cheese to begin with.) Yogurt is okay. They also want him to drink 32 ounces of fluid a day…water, juice and ONE Pediasure a day is okay since Pediasure is lactose free. He needs to eat foods that are high in fiber. He also takes Miralax 3 times a day. No more cheetos. No more Sandwiches with White bread. We are really trying to shy away from enriched flour too. Here’s the strange, yet really cool thing…AUSTIN IS EATING ANY AND EVERYTHING WE PUT IN FRONT OF HIM. My child ate Raspberries today. Raspberries!! He ate a veggie burger on Whole Wheat Bread with Flaxseed. He ate Brown Rice, Peas and carrots. He ate whole wheat pasta with tomato sauce and beef. He is devouring food. It’s like he finally has an appetite after 6 months!! Poor Cagle (our dog) isn’t getting any treats from Austin because Austin is actually interested in eating his food for the first time in…forever. This is very new for us because in the past, Austin could not have cared less if he ate solid food or not. He’s taking his new diet very well and I couldn’t be happier!

I’m trying to remain optimistic while waiting for the test results. Either way, we will just deal with what we’re handed, like we always do. The most important thing is that Austin is feeling better, looking better and eating better.


I guess it’s obvious that with our hospital stay, I did not fulfill my 31 for 21 obligations this year. I think I had a good excuse for not updating. However, I will ALWAYS continue to advocate, educate and promote awareness all year long!


I think this goes without saying, but I’m ready for October to come to an end. I look forward to a happier and healthier November!


Thank you for your prayers!

Day 24 Praying For A Miracle

I spoke too soon.

We are back to square one. He's not keeping anything down. I switched to clear liquids only. He's not keeping clear liquids down.

He's weak and lethargic. He doesn't even play with his toys. This is NOT like my child at all.

I hate seeing my sweet baby in pain...even inconsolable at times. We cried together this afternoon.

This is hard. I'm exhausted physically, but mostly mentally. I'm ready to break down...but I know that's not an option.

I pray that tomorrow brings answers and solutions. Please keep Austin in your prayers. Also, please pray that his doctor can figure out what's causing this.

31 FOR 21, Day 23

Sick Mommy- check.
Toddler with projectile vomiting- check.
Grumpy Mommy and Toddler- check.
Spending 5 hours in the ER and learning the cause of the week long projectile vomiting is due to severe constipation- Priceless.

They performed a procedure to "clean out" Austin and make him feel better. Who knew that severe constipation could cause projectile vomiting? Let's just say I have a new found respect for all people in health care. I'm so thankful they were able to fix my little man's problem. He's on his way to a full recovery and new diet that will entail a lot of fiber.

31 for 21, DAY 22

Today, I really hate some of the medical aspects of having Down syndrome. It’s rare that I have these days, but today is definitely one of them. The purpose of writing a blog post every day during the month of October is to promote awareness for Down syndrome. A lot of people don’t realize that there are several medical issues that come along with Down syndrome. While this post will make you aware of that, it will also reflect the struggles (and sometimes anger) that come along with being a parent of a child with Down syndrome.

Austin is still vomiting and has very little food intake. Dr. C ordered an Xray of his stomach and found no abnormalities or foreign objects. I’m thankful for this news, but Austin is on day 6 of vomiting. Projectile vomiting. Last night, he woke up screaming and sure enough, he vomited all over the place. He ate some toast this morning, which made me very happy! However, he ended up projectile vomiting several hours later for no apparent reason. He refused to eat lunch, so he hadn’t eaten in at least 5 hours when this vomiting episode occurred. He doesn’t have a fever, but he’s VERY irritable and NOT himself at all. Something is bothering him and I hate that I don’t know what it is. This isn’t a stomach bug. He doesn’t have diarrhea. Yes, I just said diarrhea. I can do that, I’m a mom. He does have reflux, but he’s NEVER had the kind where he spits up. Besides, he’s not spitting up… he’s projectile vomiting. I’m not sure what is causing this, but I’m making myself sick with worry. Did he suddenly forget how to eat? Swallow food? Why doesn’t he have an appetite? Furthermore, why is he vomiting…even when he doesn’t eat?

To add salt to the wound, I asked Dr. C to look at Austin’s hair at our appointment on Friday. I’ve noticed some bald patches on the back of his head. It’s so bizarre because they seem to have appeared overnight. They aren’t very noticeable unless you’re really inspecting his hair or when his hair is wet. In fact, I can comb his hair over the spots so that they aren't as visible. I remember reading that people with Down syndrome are at a higher risk for developing the Dermatologic Condition known as Alopecia Areata, which is the term used to describe patchy hair loss which is not due to infection or drugs. The bald patches have distinct borders, with no hair thinning in other areas of the scalp. It is believed to be due to an autoimmune process, meaning the body is making antibodies against hair follicles. People with DS are more prone to autoimmune diseases, such as diabetes, hypothyroidism and celiac disease. Alopecia areata is more common in people with DS, occurring in 5 to 9% of the population (compared to 1 to 2% of the general population). A gene implicated in the cause of alopecia areata has been found on the 21st chromosome


This isn’t a health issue, per se. It’s more of a cosmetic issue. Dr. C referred us to a Dermatologist. She also mentioned that there are creams that the Dermatologist can provide that can stimulate the hair growth. I’ve also read that Alopecia is highly unpredictable. In other words, people with alopecia can have several episodes of hair loss and regrowth during their lifetime. The hair regrowth can be partial or complete, or there may be no regrowth at all. In most people, hair will eventually regrow to some extent within one year

I don’t think this would have bothered me as much had I not been worrying about Austin’s unexplained vomiting and loss of appetite. However, I couldn’t help but think…my son already has Down syndrome. Yes, it makes him different and he will face bullies and judgment because of this. And now…he also has this rare Dermatologic condition that causes sporadic bald spots that may or may not grow back? I guess I just don’t think it’s fair that he has to face another challenge that makes him different and gives bullies another reason to mock him.


I suppose today was one of those days where I focused on negative rather than the positive. It’s hard to focus on the positive when you’re drenched in vomit, cleaning up vomit and trying to figure the mystery behind your child’s inability to eat and unexplained vomiting.

For the sake of advocating, children with Down syndrome can experience or are more prone to the following health complications:


• Congenital heart disease - (heart disease that is present at birth)


• Hearing problems


• Intestinal problems, such as blocked small bowel or esophagus


• Celiac disease (a digestive disease that damages the small intestine)


• Eye problems, such as cataracts (a cloudiness in the lens of the eye)


• Thyroid dysfunctions (problems with the gland that affects metabolism)


• Skeletal problems


• Dementia—similar to Alzheimer’s (occurs in adulthood)


 
Tomorrow is new day. Please pray for my little man.

31 for 21, DAY 21

31 for 21, DAY 20

BUDDY WALK! Do you have any spare change lying around?

Please consider making a donation to Austin's Angels(Austin's Buddy Walk team.)

ALL donations go directly to The Down Syndrome Guild of Dallas.

Visit our team page here: 

 https://bos.etapestry.com/fundraiser/DownSyndromeGuildofDallas/BuddyWalk2011/team.do?participationRef=607.0.367442015


We are thankful for all donations, no matter how big or small. EVERY dollar makes a difference.

31 for 21, DAY 19

Wordless Wednesday...

31 FOR 21, Day 18

A picture is worth a thousand words.

This poor baby has been running a fever and throwing up all day. Not to mention, his throat is still red and swollen. Austin and I are both ready for this pesky virus to go away!!


And I'm one tired Mommy.
 
Goodnight.

31 FOR 21, Day 17

This video makes my heart feel good...well, maybe not the very beginning of it when they talk about being made fun of.  Watch it. MORE ALIKE THAN DIFFERENT . . . My prayer and hope is that EVERYONE will see how “normal” people with Down syndrome are. Not to mention, they are capable of the same things as you and I. They shouldn’t be treated differently. They want to be respected and accepted for who they are. Don’t we all?

“In all my work what I try to say is that as human beings we are more alike than we are unalike.”

 – Maya Angelou

31 for 21, DAY 16

I almost didn’t make it. It’s 11:50 P.M. I was the first one up and as usual, I’m the last to go to bed. ;-) What’s wrong with this picture? Time to go to sleep and get ready for a new week…never a dull moment around here! I’m really excited because Austin is really starting to get the hang of this walking thing. Ahhh…I can hardly contain my excitement!!!!!!


Here’s a fact about Down syndrome:

It is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them.


Early Intervention services should be provided shortly after birth. These services should include physical, speech, occupational and developmental therapies.

31 For 21, Day 15

Today proved to be quite interesting. Austin puked on the way home from Target. Luckily, we were almost home. I was afraid that he might have a stomach bug, but apparently he just ate something that didn't agree with him. His car seat cover needed to be washed anyway ;-). It's amazing how certain things don't phase you when you become a mom. Vomit is one of those things. It must be in the "MOM DNA" or something, because I can tell you it certainly did phase me before I became a mom.

Here's a DS fact and then I'm off to bed. Hopefully there won't be any more vomit in my near future. Goodnight friends:)


Down syndrome is the most common chromosomal disorder in the world.

Approximately 1 in every 733 babies is born with Down syndrome, representing approx. 5,000 births per year in the United States.

Approximately 6 million people in the world and more than 400,000 people in the United States currently live with Down syndrome.

31 FOR 21, Day 14

I finally have time to sit down and write a REAL update! I’m trying to follow through with 31 for 21…although it’s more difficult this year because we have A LOT more going on.

 I think I can, I think I can…



Austin hit a really important milestone tonight…he walked ALL ON HIS OWN, took 2 steps! He’s been standing up in the middle of the room (without holding on to anything) for about 2 months. He stood up and took 2 steps tonight-out of nowhere! Private Physical Therapy has definitely paid off. However, Austin is very stubborn during therapy. His Physical Therapist is going to be SO EXCITED on Monday when I tell her he took 2 steps. He won’t even stand up on his own in therapy. He’ll pull up, of course…but he won’t stand in the middle of the room like he does at home. I’m definitely going to keep my camera close by this weekend so I can video him.


This is a milestone I’ve looked forward to for a long time. I also have a feeling we’ll be in trouble because Austin will REALLY get into everything. He already does. He tries to open doors and it’s only a matter of time before he figures it out. Looks like we’ll have to get those baby proof things that go over the door knobs. Our home is baby proofed with electrical outlet covers and gates. However, there are pictures frames and other things that Austin can reach. Instead of blocking off everything that a baby/toddler can destroy, I like to teach Austin boundaries. He knows that certain things are not for him to touch. We continue to redirect him and let him know that the picture frames and Play Station 3 are NOT for touching.


Austin went to the doctor earlier this week because he wasn’t acting like himself. I went with my motherly instincts and sure enough, he has a viral infection. His tonsils were swollen, which explains why he didn’t want to eat or drink. I don’t know HOW, but he weighs 24 pounds. I even had him weighed without his clothes on, so I know it was correct. I worry so much about his finicky eating. He’s ALWAYS moving too, so I know he doesn’t consume enough calories. Thankfully, he drinks a lot of milk and Pediasure. I think he’s building more muscle, which may explain why he’s 24 pounds!! Either way, I’m happy about his weight since he’s considered a little underweight for his height.


I’m so proud of Austin and his progress. He has to work twice as hard to reach milestones- and he reaches them when HE’S ready. Now, if I can just get him to clean up his toys…


More tomorrow.

31 for 21, DAY 13

Yes, I've always liked Tori Spelling. I like her even more for sharing this:


http://www.torispelling.com/post/down-but-not-out

31 for 21, DAY 12

21 Things About Austin



1. After 16 hours of labor, Austin was born at 38 weeks via emergency C-Section.


2. He weighed 7 pounds, 8 ounces and was 19.5 inches long…His Apgar scores were 8 and 9 respectively.


3. He was 2 ½ weeks old when his diagnosis was confirmed through a Karyotype.


4. Austin has always enjoyed listening to music and more specifically, any type of singing.


5. He rolled over for the first time at 3 months old.


6. He crawled at 14 months.


7. He stands up on his own (without holding on to anything) and is so close to walking!!


8. He loves Cheetos!


9. He has a silly and sweet personality around close family, but is very shy in general.


10. He goes everywhere with me and loves to be out and about!


11. He started drinking out of a straw cup exclusively at 15 months and didn’t appear to miss his bottle at all.


12. He loves his puppy dog, Cagle. Austin loves to grab Cagle’s toys and “hand them “to him (aka put them in Cagle’s mouth). It’s really sweet.


13. He loves the iPad, Laptop and any cell phone with a touch screen.


14. His hair is blonde and his eyes are Hazel.


15. He is a very selective eater.


16. He’s easily distracted and even a little nosy at times ;-)


17. He has 7 teeth.


18. He is extremely sensitive to loud (unexpected or sudden) noises.


19. He’s definitely a morning guy and always happy when he wakes up (at the crack of dawn).


20. He usually goes to bed between 7:30-8:30 and takes a 1-2 hour nap in the afternoon.


21. He is the greatest gift I’ve ever received from God.

31 For 21, Day 11

Normally I would post a fact about Down syndrome, but Austin isn't feeling well. Therefore, my post will be short tonight so I can cuddle with my little man.

Life is keeping me busy. Sometimes I feel overwhelmed...but I wouldn't change it for the world! I'm sure a lot of you can relate. Having a child with Down syndrome really isn't all that different;)

More tomorrow!

31 FOR 21, Day 10

According to a new study put out by Dr. Brian Skotko, 97% of siblings (ages 9-11) said they love their brother/sister with Down syndrome. Similarly, among siblings (ages 12 and older), 97% expressed feelings of pride about their brother/sister with DS and 88% were convinced they were better people because of their sibling with Down syndrome.


How cool is that? We look forward to giving Austin a sibling, but it’s still a few years off. I feel like he NEEDS me to himself a little longer before adding a new sibling to our already crazy life. After all, you can never get these years back and I want to soak up every moment.

That’s all for tonight, more tomorrow!

31 for 21, Day 9

I have a very heavy heart tonight. One of the things I love most about the Down syndrome community is that we all have this unexplainable bond. We look out for each other. We give/receive advice. We pray for each other. Sometimes we even cry together.



When something happens to one family, it ripples through the entire Down syndrome community…worldwide.

One of our own (Joany George) lost her beautiful 8 year old daughter (who had Down syndrome), Carly, to an undiagnosed heart condition 18 months ago. Carly’s death was completely unexpected and happened very suddenly. This family has been through so much heartache…more than anyone should ever have to go through. Last night the unthinkable happened…The George’s home caught on fire and burned to the ground. They lost everything. Their only son, Brad, was killed as a result of the fire.

It’s so very difficult to understand God at a time like this. WHY THEM?! Haven’t they experienced enough loss and heartache? I know I shouldn’t question God, but it’s just so difficult to understand. Please keep the George family in your prayers. I cannot imagine losing a child, much less losing 2 children in the timespan of 18 months. It’s unfathomable and it really puts life into perspective. Pray for this beautiful family.

31 for 21, DAY 8 - Be Our Guest

We have a guest blogger in the house! Austin's dad is writing the blog post for tonight. It's nice to read a dad's point of view, so enjoy!

Hello everyone, it’s Austin’s daddy making a contribution for 31 for 21. First, I’d like to wish my baby momma (and wife) a happy birthday today. I’m not a regular at this, so forgive me if it’s a little ramble-ish… One thing that I’ve learned being a parent of a child with Down syndrome is that most people just don’t know how to respond to the subject of people with Down syndrome. My wife and I both feel very strongly about Down syndrome awareness.



When someone tells you that their child has Down syndrome, even though it may be the first thing to come to mind, you don’t need to tell them, “I’m sorry”. For me, it actually stings a little even though I know they mean no harm. Yes, it can sting. Why? Glad you asked. My little Austin completely holds my heart. He has held it sense the second he breathed air into this world. The day he was born was, to this day, the happiest moment of my life. I don’t want the beauty and profound joy of that occasion minimalized by someone’s pity. The thing is, there is nothing to be sorry for. He is an angel who happens to have Down syndrome. He also likes to play. He laughs an infectious laugh when he is tickled. He cries when he is sad or scared or hurting. Sometimes he is grouchy and sometimes he is ecstatic. He wants to get into everything he shouldn’t and go where he’s not allowed. He likes to be held and give kisses. He usually prefers to feed himself but sometimes still wants someone to feed him. He has Down syndrome, but he is not defined by it. My wife and I say that a lot, but it’s so true. Austin, like all others with DS, is defined by who he is as a person, not something in their genetic make-up. When I speak of him I say “my son” not, “my DS son”. I don’t ask where the “Down syndrome food is” or “Where do you keep the Down syndrome baby clothes?” or “where’s the Down syndrome diapers?”. Well, I’m starting to ramble so, signing off.

Well wishes to all- Austin’s “ daddad.” - as he calls me.

31 for 21, Day 7

He makes life worth living...

Why are medical researchers today so keenly interested in Down syndrome?

Down syndrome is a developmental condition. As researchers learn more about the molecular genetics and other aspects of Down syndrome, they also obtain valuable information about human development and can advance the study of many biological processes.


In addition, individuals with Down syndrome have a higher incidence of certain medical conditions, and the study of Down syndrome may yield important breakthroughs in those areas. Research in Down syndrome provides a way for looking at many important problems:


• Heart disease: Up to 50% of individuals with Down syndrome are born with congenital heart conditions. The majority of heart conditions in children with Down syndrome can now be surgically corrected with resulting long-term health improvements. However, scientists continue to search for the cause of these heart conditions and look for means of prevention.


• Alzheimer's disease: Estimates vary, but it is reasonable to conclude that 25% or more of individuals with Down syndrome over the age of 35 will develop the clinical signs and symptoms of Alzheimer's-type dementia.


• Leukemia: Approximately one in every 100 individuals with Down syndrome will develop leukemia; or, to put it another way, 99% of people with Down syndrome will not develop leukemia. The majority of cases are categorized as acute megakaryoblastic leukemia, which tends to occur in the first three years of life, and for which there is a high cure rate. A transient form of leukemia is also seen in newborns with Down syndrome, disappearing spontaneously during the first two to three months of life.

- All information taken from NDSS.ORG

31 for 21, DAY 6

I always seem to meet the coolest people at Target. Tonight was no exception.



I was in the checkout line and the cashier immediately smiled at Austin and said hello. She asked me how old he was and said he was 19 months old. She replied, “He’s so cute.” I thanked her. Then she said something that caught me off guard…”He’s really small for 19 months. “ I explained to her that he has Down syndrome and that children with Down syndrome are usually smaller than typical children. She nodded with a smile and said, “My uncle is 34 and has Down syndrome. I knew he (Austin) had Down syndrome the minute I saw him. There really is nothing like it (Down syndrome). They are just such amazing people.” I was so touched by her words. I told her that you really have to know someone with Down syndrome to truly understand how beautiful that extra chromosome is. She agreed and told me that each time she goes to visit her uncle, they always watch Star Wars together. Apparently, he’s a big fan.


My heart was filled with joy as I left Target and I needed that. I was also reminded that people with Down syndrome really aren’t all that different. In fact, they are MORE ALIKE THAN DIFFERENT! :)

31 FOR 21, Day 5

It's been a crazy day, so I'm going to share some information from the NDSS website. More tomorrow!

Down syndrome is a genetic condition that occurs in one in every 691 births. It is the most frequently occurring chromosomal condition and is found in people of all races and economic levels. More than 400,000 people in the United States have Down syndrome.

A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. However, many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.


People with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. Children with Down syndrome learn to sit, walk, talk, play, and do most other activities; only somewhat later than their peers without Down syndrome.


Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives. People with Down syndrome attend school and work, and participate in decisions that concern them, and contribute to society in many wonderful ways.

31 FOR 21, Day 4

Austin has been working extra hard in therapy. A while back, I wrote that he was on the brink of walking. And well, he was! For some reason, he’s “stalled” as far as Physical Therapy progress goes. He’s decided that he will only walk with his walker…for now. His Physical Therapist isn’t worried. He progressed like crazy for the first 4 months. He’s more and more stable on his feet! It will happen…it could be next week or it could be next month.



A lot of people don’t realize that children with Down syndrome are developmentally delayed. In other words, their gross motor skills, fine motor skills and speech milestones don’t generally happen according to the typical milestone charts. I still get emails from babycenter.com telling me my child is “an expert runner” this month. I’ve learned not to read those emails (although sometimes I do peak)…and sometimes I even mock them.


The bottom line is that you can’t look at the typical charts. In fact, you should throw those charts out the window if you have a child with Down syndrome. In the beginning, the delays bothered me. I would obsess over every little exercise we learned in therapy. I had to learn to stop obsessing. In doing that I’ve learned that Austin hits milestones when he wants to and on his terms.


I’m impatient by nature and having a child with Down syndrome has taught me to slow down and enjoy the little things. I’m not going to rush the milestones. We appreciate them so much more…even the small ones. The most important thing to remember is that children with Down syndrome WILL do everything that typical children do. Some milestones may take longer to achieve than others…but they WILL achieve every milestone in their time. 


That’s all for tonight:)

31 FOR 21, Day 3

You probably won’t know just by looking at your newborn if she or he has Down syndrome – unless you’re a doctor or have extensive medical training. Of course, there are always a few exceptions. However, it seems like most of my fellow moms/friends were quite surprised to learn their child had Down syndrome.


So…what would make a doctor suspect that a child might have Down syndrome? It’s not just physical traits…but the physical traits are what will likely cause a child’s pediatrician to take a second look.

My friend, Abby, is a Pediatrician and she wrote an amazing blog post about 5 Common features (markers) Of Down syndrome. Abby and her husband, Rick, are the proud parents of Noah, a beautiful baby boy who happens to have an extra chromosome. They have an awesome website/blog that is VERY beneficial! Not to mention, they share pictures of videos of their ridiculously cute son. Abby’s explanation of characteristics of Down syndrome is the best I’ve read, by far. She has the expertise of a Physician and the compassion of a mom. Abby is also putting together a “New Parent Guide.”


Check out Abby’s post about 5 Common Features of Down syndrome HERE .


Check out Abby and Rick’s New Parent Guide HERE  .


More tomorrow!

31 FOR 21, Day 2

I think we’ve all said it at one time or another.
“That’s retarded.” “You’re a retard.”


I used to foolishly utter these phrases without giving a second thought. Today? I CRINGE when I hear the "R" word.

I don’t view my son as being “retarded.” I never have and I never will. TAKE THAT, OUTDATED TEXTBOOKS! However, this word is unfortunately used to make fun of or describe individuals with intellectual disabilities. You see, this is where it becomes personal and hurtful.

Next time the person in front of you forgets to use his or her blinker, please don’t call them a “retard.” If you’re one of those people that just HAVE to say something when someone does something that offends you or makes you mad, please use another word. I can think of several different expletives that don't begin with the letter "r". I won’t list them here, but you get my drift. If your friend does something stupid, please don’t refer to him or her as “retarded.”

I’m sure you’re wondering WHY I care? After all, you’re not talking about MY child. I know most people don’t mean it in a derogatory manner. Like cursing, I think this word “retard” is used mostly out of habit. Well, it’s a bad habit.

No, I’m not being overly sensitive. This word is often used to describe something NEGATIVE. Most of all, it's hurtful.

When you’re complimenting one of your friends, you wouldn’t say: Your hair looks retarded.

You would say: Your hair looks nice.

My point is this: The word “retarded” is not a word that’s used to describe something nice or pleasant. I understand the need to express your feelings and I’m all for that! However, there are so many other words that you could use. Next time you’re about to say, “That’s retarded.” Or “You’re such a retard”…I want you to think about this face:

The term “Mentally Retarded” is outdated. My son and all of his friends with an extra chromosome are NOT retarded. Again, TAKE THAT OUTDATED TEXTBOOKS. They have an intellectual disability. Most of all, they have feelings...and parents who love them. Think about how much you love your brother, sister, mom or dad. Now, think about how you would feel if someone were to do something to hurt one of them. Multiply those feelings by 100000000. That's how we (parents) feel when you use the word "retarded."

THINK BEFORE YOU SPEAK!

According to NDSS.ORG:

While it is unfortunately clinically acceptable to say “mental retardation,” you should use the more socially acceptable “intellectual disability”. NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

31 for 21, DAY 1

The most common response I received from others after finding out Austin had Down syndrome was “I’m sorry.” It’s a natural response, I suppose. However, I didn’t need anyone to be or feel sorry. I wasn’t grieving. My child was (for the most part) healthy. I found solace in talking to other parents on the Down Syndrome Message Board on Babycenter.com. It was there that I was congratulated on the birth of my son, rather than pitied. It’s important for people to understand that regardless of any diagnosis, we still have the title of “Mommy.” I was a new mom. My son’s birth wasn’t some unfortunate event that I look back on with sadness. It was the happiest day of my life. I didn’t know if he had Down syndrome or not when he was first born, but it didn’t matter. When I held Austin for the first time, nothing else mattered and I immediately fell in love with him. He was what God meant for me to have.

There are several emotions and thoughts that consume your mind upon finding out that your child has Down syndrome. You will probably have the urge to google everything about Down syndrome. I would discourage new parents from doing that. A lot of the information on the internet is outdated, negative and flat out ridiculous. There are some websites that are helpful(*see the bottom of this post for a list of helpful websites), but sadly, a lot of them refer to Down syndrome as an illness or something that our children “suffer” from. Perhaps the people who write stuff like that “suffer” from stupidity? No one can tell you what to expect, what your child will or won’t do. NO ONE! Individuals with Down syndrome are unique. They are not “all the same.” One child with Down syndrome may struggle with gross motor skills, while another will not. One child may eat anything you put in front of him/her and another may struggle. One child may not struggle with Speech, while the other will require a lot of Speech Therapy. We can’t predict the future for a typical child, so why do that to a child with Down syndrome?

It’s important to remember “people first” language when you’re talking about a child with Down syndrome. What does that mean? In a nut shell, don’t use Down syndrome to define the child. Here are some examples:

Incorrect: I saw a Down syndrome baby at the mall.

Correct: I saw a baby with Down syndrome at the mall.


It’s also important to not put a child with Down syndrome in a “group” or stereotype him/her.

Myth: People with Down syndrome are always happy.


Truth: People with Down syndrome have feelings, just like you and I. In other words, if something is bothering them, they may appear to be sad or even angry. The number of chromosomes we are born with doesn’t dictate our ability to experience different emotions.

That’s all for today…more tomorrow.

*Recommended Websites:

http://www.downsyndromedallas.org/

http://www.down-syndrome.org/

http://ndss.org/

http://nads.org/

31 FOR 21

It’s THAT time again, friends. Down Syndrome Awareness month will begin tomorrow. Last year, I participated in 31 FOR 21 in honor of Down Syndrome Awareness month. If you’re not familiar with 31 for 21, it’s basically writing a blog entry every day during the month of October to promote awareness for Down syndrome.

If you’d like to participate in 31 for 21, sign up HERE.

Our life is busy, as usual. Some days are low key and then there are days where I consider it a miracle from above that we were actually able to make it out the door. If you’re a parent, you understand. Austin’s Speech Therapist at Our Children’s House of Baylor is transferring to a different location (but still staying with the same company, just a different campus). Austin loves his Speech Therapist and responds so well to her. Therefore, we are “following” her to the new location. Austin receives Physical Therapy at Children’s Medical Center. The only reason we go to Children’s is because we adore and love our Physical Therapist! She is also transferring to a different location (but staying with the same company)…and we’re following her too. The theme of the week is: Stalking. Thankfully, both of his therapists are okay with this.

My blog will be undergoing a serious makeover in the next few weeks. I believe I’ve had this design for over a year. It’s definitely time for a change. I wish I had more time to brush up my HTML and design skills…maybe one day?

I keep debating whether or not I want to put Austin in THE RISE . Don’t get me wrong, I LOVE the school. I know Austin would thrive and most of all, LEARN AND THRIVE IN A NURTURING ENVIRONMENT! He’d also be safe and I would have peace of mind. My only problem is that children with developmental delays MUST attend 5 days a week. There are not part time options with The Rise. I could always put him in a Christian Pre School 3 days a week. However, I don’t know that they would be as “accepting.” All the teachers at The Rise have Masters Degrees. The Teacher’s aides are even required to have (at least) a Bachelor degree. Moreover, all of their degrees are related to Special Education.

Decisions, Decisions… MUST PRAY!

I’ll be back tomorrow (and EVERY day this month to promote Down syndrome awareness and of course, EDUCATE! )

Blessings,
K

Haircuts And Other Happenings

The month of September is coming to an end and I’m convinced someone pressed the fast forward button when I wasn’t looking.

Some of you may remember, but I write articles for The Down Syndrome Guild of Dallas that are published quarterly in their newsletter. I interviewed a family that is very near and dear to my heart. Here’s the link to the article; scroll down to page 6.

http://www.downsyndromedallas.org/newsletters/September%2011%20English%20Web%20Newsletter.pdf

Austin had his first haircut last month. He did so well and the woman who cut his hair said he was a “model first haircut baby.”

        BEFORE

AFTER

Austin has been such a stinker in all of his therapies lately. He’s beyond stubborn and tries to flash his cute little smile to get out of working. Luckily, his Physical Therapist and Speech Therapist know him very well. They can resist his sweet smile when it comes to therapy and working on his goals. His Occupational Therapist is also learning to resist his charm.

We saw the Pediatric Cardiologist last week. The hole in Austin’s heart is still there, but has shrunk from 10mm to 8mm. He will still require surgery to repair the hole, but his Cardiologist determined that he’s DEFINITELY a candidate for surgery that will go through his leg to repair the hole- verses open heart surgery. The right side of his heart is still significantly enlarged due to hole. However, it will go back to a normal size once the hole is repaired. We were looking at surgery at age 2. Dr. K now feels that we can wait until Austin is 2 ½ -3 for surgery.

We also saw our Genetic Doctor last week. He was very impressed with Austin and even noticed how good he is at problem solving. We are starting a new vitamin regimen that is considered “controversial” to some. Dr. Wilson supports our new plan for beginning Nutrivine.

Last Sunday marks 8 weeks of breaking out into hives. I had a blood test to determine what I’m allergic to and much to my dismay… I’m not allergic to any of the common food and airborne allergies. Obviously, the test cannot possibly look for EVERY allergy…so it’s likely I’ll never know WHAT I’m allergic to. The hives have become less severe, but they are still present and rearing their ugly head. I bet you’re all itching just reading this... I just wish I KNEW what was causing this allergic reaction so I could make sure to avoid it.

That’s all for now.

Blessings,
K