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

Wake Me Up When September Ends

We have been so busy lately. I feel like I need to pencil in time to check my email and even take a shower! Don't worry, I always manage to get my shower in most days...even though it usually takes place at midnight.


I’m sure we can all recall (at one time or another) during our childhood hearing our mother or father tell us, “Well, that’s his or her loss” when you complained that someone didn’t want to be your friend or play with you that day at school. Austin's too young to grasp this concept just yet...and I feel like I'm too young to even think about having to give this "speech" as a parent.

I’ve been searching for a Christian Mother’s Day Out program for Austin to attend once or twice a week from 9:00-12:00. My sole purpose for putting Austin in a MDO Program is for him to socialize with other children and overcome his severe separation anxiety. I’ve been surprised with some of the responses I’ve received upon calling some of the programs. None of them (at least the MDO programs that I have called) have any sort of experience with children that have special needs. In fact, I could tell they really had no idea how to “handle” or even respond to my inquiry. Is it really that rare to inquire about enrolling your toddler who happens to have Down syndrome in a Mother’s Day Out Program? Part of me wanted to scream, “It’s just Down syndrome!” Another part of me wanted to cry because it was an unfortunate reminder that most people have preconceived ideas about Down syndrome. They believe the all too common stereotypes: All people with Down syndrome are the same…They are always happy. It must be really difficult to have a child with Down syndrome. I can’t imagine what I’d do if my child was born with Down syndrome? I feel sorry for that family.

Instead of crying, I will use my energy to EDUCATE AND INFORM because there is obviously a need for it! A diagnosis of Down syndrome isn’t devastating. It certainly changes things, but it’s not something I ever thought would “send me over the edge” so to speak. The truth is that my son’s extra chromosome isn’t the issue. In fact, Down syndrome (and all that comes with it) is a walk in the park compared to dealing with the different looks, stares and people who put limitations on my son just because his genetic make-up isn’t what’s considered “normal.”

I wish everyone would just treat Austin like “any other child.” When he gets older, I will expect him to have manners, say “ please” and “thank you”, raise his hand in school when he has a question, follow directions, rules, etc. We are blessed that our friends have never treated Austin differently. Everyone could learn a lesson from our amazing friends and family.

Austin had his 18 month well child visit a week ago. He weighs 22 pounds and 6 ounces. He’s grown vertically…so maybe that’s why he isn’t gaining weight? Dr. C didn’t seem too concerned because according to the growth chart, he’s proportionate. He’s a very finicky eater. In fact, I think we’ll start buying Pediasure by the case. He has sensory issues when it comes to food, but most of it is behavioral.


This week will be semi-busy, but next week is packed with our regular therapy and an appointment with the Pediatric Cardiologist AND the best Pediatric Genetic Doctor in the world! I’m nervous about the Cardiology appointment because I was told at his previous appointment that the hole in Austin’s heart will likely NOT close on its own. PRAY. PRAY. PRAY. I have Faith. God can do things that Doctors will never be able to explain. I pray that the hole will close on its own. I pray that the lord will heal my sweet baby’s heart. I KNOW that God can heal Austin’s heart. IN JESUS’ NAME I PRAY!

Then Jesus answered, "Woman, you have great faith! Your request is granted." And her daughter was healed from that very hour. – Matthew 15:28

The JOY of the LORD is my strength!

Have a blessed week, my friends. Hopefully it's a 4-day work week for most of you!
-K