Where has the time gone?

Today, Miss Harper Alice Bohacek, you are 5 months old. You have given your daddy and I five months of pure joy, celebration, worry, but mostly love.

I can say that we have witnessed and you have survived a medical miracle. Any doctor who is able to repair the holes in my precious baby girls heart is a miracle worker. You not only survived but you are thriving, kicking butt and taking names. 

We have bows!

At 5 months old you are: 

* wearing 3 month clothes

* wearing size 1 diapers

* smiling all the time (except for pictures)

* trying to hold your own bottle

* almost rolling over

* last week you were 9 lbs 14 ounces...I'm sure now you are over 10 lbs

* love to play with the links/rings

* obsessed with your mobile

*going to be at 9 and wake up at 3 for a bottle then sleep again until 6:30-7:00

*drinking 2-5 1/2 ounces a feeding

You always wake up with a smile on your face. Either from a 30 minute cat nap or a 6 hour night time sleep you wake up one happy baby. 

You have lots of friends already!

Sully seems pretty smitten

You have Emersyn wrapped around your finger

You are a cougar

You may be little but you are acting like a big girl. 

Exersaucer is eating you up!

My goal for you and for myself is to help show other mommy's and daddy's that Down syndrome is not  a death sentence. If you are reading this and your child has recently been diagnosed with Ds-WELCOME and feel free to send me an email. I hope you are out there and reading our happy journey.

Our family is happy (except when the dog is chasing the cat and mommy is chasing the dog and daddy is sitting on the couch laughing) and normal. You are happy and normal. And that's the way we will raise you. 

You are special but not only because you have an extra chromosome that gives you designer genes-but because you are Harper Alice-a beautiful bouncing baby girl.

Signs

sign

  [sahyn]

noun

1.

a token; indication.

2.

any object, action, event, pattern, etc., that conveys a meaning.

3.

a conventional or arbitrary mark, figure, or symbol used asan abbreviation for the word or words it represents.

4.

a motion or gesture used to express or convey an idea,command, decision, etc.: Her nod was a sign that it was time toleave.

5.

a notice, bearing a name, direction, warning, oradvertisement, that is displayed or posted for public view: atraffic sign; a store sign.

I bolded the second meaning of "sign" or in some cases an "omen." The world "omen" to me is creepier than the word "sign" so I believe in signs (less creepy). To be honest, I have been meaning to write this post for awhile but I kept forgetting but a sign keeps popping up to remind me. 

A cardinal. Yep, a bird. For those of you who know mean (really know me) I am terrified of birds. It comes from multiple occassions of birds chasing me. And a few pooping incidents as well. Thank you pigeons in Milan, Italy for welcoming me to your country. 

Back to my point, about a week before Harper's surgery I was having serious doubt and anxiety that the surgery wasn't going to be as planned. I feared something bad was going to happen and I wouldn't see my daughter again. Then I saw a red cardinal outside my kitchen door. "Pretty," I thought and kept moving into the bedroom to get ready for the day. There it was again. Hmm, it's following me. Now this cardinal was easy to spot. A bright red bird against naked trees is sure to stand out. I then realized that this bird signified something and I, of course, went to Google. 

The symbolic meaning of cardinals deals with vibrancy and brilliance.

As we observe the cardinal – particularly against the backdrop of the stark winter months, we are reminded that even when things appear bleak or isolated, there is always the presence of beauty, hope, and love.

(taken from here)

I felt a sense of relief after reading that meaning. My mood shifted and I was, once again, focused on the positive. Then, the day before H's surgery, her and I had to go to the hospital for pre-op appointments. I was a mess. I cried the entire car ride to the hospital. Until I saw this...

I tried pointing at the license plate but my finger is way off. If you can't read it, it says: JC LVZ U.

Translation: Jesus Christ Loves You. 

JC and I haven't been the best of buds in a long time so this plate was a sign that I was taking myself, and Harper, in the right direction. 

Go ahead, call me crazy. I'm sure many of you don't believe in signs, omens, premonitions, or anything else in that nature. But I do and these signs, as silly as it sounds, helped me realize that Harper would have a successful surgery. Maybe I was grasping at anything that I could. I do know that Mr. Cardinal has made numerous appearances in my yard since we have been home from the hospital as if he is there to reassure me that he does know what he is talking about. 

I don't need a sign to tell me that my 5 month old (gasp...tomorrow) is growing up! I just have to look at her!!

It's Sunday night and Andy is cooking Brisket (yum-o) and Harper and I go back to school/work on Wednesday so I'm going to soak up every minute with my little H!

Playdate, doctor, shingles?

I'm making the most of my last full week with Harper before I go back to work and she goes back to school. Playdates, doctor appointment, photo shoot, crafting, shingles, and hanging out with mom. New shingles for the house? Nope...that mama has shingles (more info to come).

Harper had a fun play date with Sully on Monday. Sully is: older, wiser, a professional walker, good at sharing his thumbs, and an expert at eating Cheerios.

See? Expert at sharing thumbs

Boyfriend material

Harper had a scheduled post op with her pediatrician on Tuesday. Basically just to make sure she was gaining weight, no murmur, and just overall cute. She passed with flying colors and now weighs 9 lbs 14 ounces! Don't bother doing the math, I did it for you....that's an ounce a day since discharge! Holy moly girlfriend is growing.   

Before I know it she will be going to prom, talking to boys on the phone, and having sleepovers. I've joined many Ds Facebook pages lately and am so excited to be "meeting" parents with older children who have Down syndrome. I smile when I see prom pictures, wedding pictures, and graduation pictures. Some day, my dear, your dreams will come true.

If you are my friend on Facebook (if not please send me a request) you know that I have Shingles. Yep, I'm 30 and I have Shingles. I have to give Tara (also Sully's mom) a big SHOUT OUT for diagnosing me---via text message. See, Tara is a rash professional. I should have showed her on Monday but seriously my rash wasn't really bothersome then. For the record, it's on my upper back. I also have been feeling really achy and sick lately but not nauseous (nor pregnant get your mind out of the gutter). I attributed it to not sleeping well and being stressed out for the past month 4 months. 

Long story short...I texted Tara, she texted back that I needed to Google Shingles. I did. Called the dr. and made sure to say that H had OHS so I could get an appt ASAP. In at 3 out at 3:30 and had numerous nurses stop in to see the 30 year old with the 65 year olds disease.

It's painful, annoying, and really I have better things to worry about but it is my body telling me to ease up so ease up I must. I have nothing scheduled until work next Wednesday (c'mon Mary have that baby!)

If you were paying attention I mentioned a photo shoot above. I will have more info about a fantastic organization called Inspiration Through Art later. But for now, I am going to make you wait!

Enjoy your day and wash your hands!

No smiling allowed when modeling

Moving forward....and sideways

Wednesday, January 4th at 5:00 pm I realized that hubby and I could move forward....with a healthy Harper. Yes, she was just out of surgery and we had no idea what her recovery would be like or when we would even be able to leave the hospital BUT...I felt the momentum to move forward. 

Being loved on my Emersyn and Weston

Our daughter, all 9 lbs and 4 ounces of her (at the time), was healed. No more will I stare at her chest watching her heart beat super fast and wonder. Wonder when she would start turning blue or wonder what if. The planning stage had begun. The night of her surgery Andy and I stayed in her room with her and talked about our future. We had always talked about our future with Harper but now it was really going to happen. First birthday party ideas, change the office to a playroom, sell our house, buy a new house. These are the plans. Will we stray off? I bet. As long as Harper, Andy, Brewer, and even Lola are by my side....then I'm ok with that. 

Harper is moving sideways. Or trying to ROLL! Yep, that's right, she is almost rolling over. Silly girl still isn't holding her own head up 100% but she has decided that it will be easier to roll over! She hasn't done a complete roll....yet. I fear I'll leave the room for a second to find her on her belly! I don't want to miss it but I know that she is moving forward with us... by starting off sideways.

She just has to move that arm and she will be a rolling!

Most of the steri-strips are off!

Big girl in the exersaucer

Paying it forward...again

I wrote a post in the past that asked myself if I was doing enough to raise awareness about Down syndrome. I want to educate myself, family, friends, and others. But I don't want to cross the line into annoying. I'm sure I've lost a few Facebook friends since posting this blog and explaining that Harper has Down syndrome. I do know that this blog has brought out old friends and many new friends. I hope that I have been able to "teach" others about Ds but I especially hope that I've made you, the readers, look at Down syndrome as a blessing and not a burden.

As difficult as the last 4 1/2 months have been....HARPER IS NOT A BURDEN AND SHE WILL LIVE A QUALITY LIFE. If you are a friend of mine on Facebook then you saw that I posted a link sharing the story of Amelia. Amelia does not have Ds but has Wolf Hircshhorn Syndrome. She needs a kidney Transplant and the Children's Hospital of Philadelphia (CHOP) said she was not eligible because she is mentally retarded. That was the dagger in my heart. That could have been Harper. Even though Harper may be delayed does not mean she shouldn't be treated the same as anyone else. And neither should Amelia. Amelia's story blew up the internet. And I mean blew up. CHOP's Facebook page was filled with messages and a petition is also going around. The story has been featured on the Today show, NBC nightly news, CNN etc. CHOP has issued 3 statements and Amelia's family has  since been contacted by CHOP to come back in and to discuss a family donor transplant. I believe this action at CHOP is not a full representation of the hospital but a few insensitive doctors trying to sweep this under the rug. 

Yes, Amelia's future will be filled with doctor appointments, physical therapy, and many other "extras" but so does a child with a peanut allergy, a learning disability, or behavior problems. Harper's future is unwritten. She gets to write it and yes it will include doctor appointments, physical therapy, sign language etc. But so what? Harper has an extra chromosome and it makes her....her. She will lead a beautiful life and Amelia will as well.

She is newly mesmerized with her hand!

This past week I have witness a blog miracle. One little blog post from Noahsdad.com went viral and Noah and his dad are now making the rounds on all national news outlets. It's amazing. His post: how Target did tons by not saying anything about their model Ryan who has Down syndrome. Seriously, the buzz is amazing. Follow him on Facebook or his blog and you can keep up with the crazy adventure he has been on in the past week. That post could have been any of us. But it doesn't matter. Do I wish it was me? Sure. But his voice is just as good as my voice.

There is still time to donate to Nella's 2 for 2 Fund. You can find the info here. You don't have to donate much. $5 will go a long way. I donated this morning and it was in honor of Harper. You don't know Nella. Hell, I don't even really know Nella but have followed her journey since last May and by gosh I feel like I know Nella. Do it in honor of Harper and all the other kids that have Down syndrome you may know. Every $ will help raise awareness for Down syndrome.

Watch this video! 

As I write this post I realized that I've changed. I've always cared about people but I have morphed into an advocate. When did that happen? Then I remember that the little girl who is asleep in front of me made that happen. Not only am I her advocate but I have the back of all of Harper's designer gene sisters and brothers out there. They need as many voices as possible and I plan on making my voice loud and proud!

This post goes along with my "pay it forward" attitude.  If you are tired of my loud and proud advocate voice then, by all means, feel free to stop following me. I'm not preaching. I'm informing. Love it or leave it.

Surgery Update

I worked on a completely different post last night to publish today. That post is on the back burner because I have BREAKING NEWS!! BREAKING NEWS! 


Today was the one week post op appointment with the surgeon and he said, "I don't have to see you again."

Yes you read that correctly. Harper doesn't have to see her surgeon (who we love and adore) ever again.

Cue the happy squeal from this mama and the overwhelming urge to cry. I was able to blink back the tears until we got into the car.

We will still have follow up appointments with the pediatric cardiologists (again we love and adore her) but those are monitoring visits and will start to be few and far between.

I can't stop smiling. Meanwhile, Harper must be exhausted from showing off to the surgery team because she is in the middle of a long nap. But I'm still smiling and I have a little extra skip in my step!

Again, THANK YOU for the amazing online support and love. Part of Harper's success has been because of you. We felt the love, therefore, she felt it too!

Why I Love Target

This post may not come as a surprise to most of you. But I love LOVE Target. Here are the 10 reasons:

1. The dollar section
2. We have a Super Target by my house so one stop shopping!
3. The prices are reasonable.
4. Nothing looks cheap.
5. Shoes
6. Clothes (esp maternity)
7. Home goods
8. Baby stuff
9. Shoes (repeat?!)
10. A recent ad with a little boy who has Down syndrome.

What? You didn't see it? Here it is:








Isn't he cute? His name is Ryan and he is pretty awesome if you ask me not only because he rocks designer genes but he is super cute! If you heard about it it's because of the Down syndrome community not because of Target. Why do you ask? Target did the greatest thing in support of Down syndrome. They didn't say anything. No press release. No commercial. Just a normal ad with normal kids. The kicker? Nordstrom's did the say thing a few months ago and no one detected it. Guess who was the model? Ryan! 


I see our goal of awareness and acceptance growing with ads like this. I guarantee that most of you actually had this ad at home, looked at him, and didn't even notice Ryan. Why? Hopefully it' because it doesn't matter. Will this ad make me shop at Target more? Hell yeah....but that isn't that difficult due to the fact I am probably the most frequent shopper at my local ST. 


I'm Down with Target! Are you? 


Speaking of models-have you seen Harper's model face? She takes modeling for mama very seriously. She is very professional. 

I've had many emails/posts wondering where these outfits are from. Sorry but the tank top/dress is from Paris. Nope not kidding. My kick ass cousin was in Paris last summer and snatch up a few wonderful items for Miss H. The flower and headband are from a craft fair and the pink polo dress I think is Old Navy. Pictures were taken with Instagram. Follow me: I'm kbohacek. We took them the day before the snow came. It felt like spring and H and I lived it up. 

Actually a spring/summer dress with a cardigan belted on. Maybe it was the fact that we spent 5 days locked in a hospital but our inner diva's came out and we had a mini fashion show. 

Have a fabulous weekend and remember to shop at Target! I know I will be!!

i