9 months already. Well I mean 10 months because it took me so long to finish this post

This post is well over due. Last Friday we went in for our 9 month check up. Connor is a big old whopping 16 pounds.  Since our last post Connor can now sit up independently. He still has a spill occasionally but does such a great job. Now our focus is crawling and and drinking from other than a bottle. Please pray he catches on quickly and I can ditch the bottle around 1. 

We went to see a nuerosurgeon in early May. Connors head is flat in the back and the measurent was slightly over where they prefer so they recommended a helmet. But after prayer, we decided that we would pass on the helmet for several reasons:

1. In Connors case it was cosmetic only

2. We live in Texas and it is hot. My son is already warm blooded and I know he would be miserable. 

3. I would have to be down at the med center every 2 weeks to remeasure

4. The cost when it's debatable on whether it helps. 

We also had confirmation in multiple conversations including our Dr. And the Down syndrome clinic doc. She said she's concerned with "our kids" because the helmet causes there head to drag forward. So that's the scoop. But the last 3 weeks our little guy has been sleeping on his tummy and he seems to sleep so much better. 

Wow! So Connor just turned 10 months yesterday. I started this post a month ago. Here is what we've been up to lately!

Rockin the new high chair

Occupational therapy. We love Ms. Julie. She comes in every 2 weeks and does some great things. Like making him work. 

Connors new bestie, Jase, was born and we got to visit in the hospital. 

Play date with friends! 

Just being me, cute!!!

Chicky with the family!!! Even though he didn't get to eat any. He still had fun

Our friend, Cody took this. She's posted three of them and there are more. We are patiently waiting to see them all. She's super amazing! 

Playing in big brothers room

Rise tuition letter

Jason and I just got home from date night! On the way in we grabbed the mail and there it was, the letter. The official letter from Rise that would tell us how much our monthly tuition is. I was so nervous opening that piece of paper.  Good thing our friends Jon and Carly prepped me on what they pay. It made the sticker shock a little less shocking. But God is good, as always. He has  provided me with a part-part time job that allows me to work around the kids. It's a friend of mine. She's an amazing real estate agent and I'm doing some work for her. So the plan will be to bump up my hours to part time in the fall. And the money I make there will pay for most of Connors school. So if you are looking to buy or sell your home I get a referral fee (since I'm licensed). And Joanie's pretty awesome. In 2013, she sold a house every 4 days. She's definitely a go getter. 

Regarding Hunter at Rise, they currently don't have a spot for him. Which is okay because his portion alone would be $886. Yikes. So he will be attending Sugar Creek Baptist on Tuesday and Thursday in the fall. 

Thanks for your continued support and prayers. 

Cardiologist update

Yesterday was Connors first time to see the cardiologist since he was a few weeks old. I thought the appt was a success. Although Connor has 2 holes in his upper chamber we are only concerned with one of them.  But because Connor isn't showing any signs such has shortness of breath, turning blue, sweating while eating, we will continue to monitor every 6 months. And in a year we will do another echo. Our prayer is that Connor will never have to have surgery or be on any restrictions!!!

Two cute stories about our visit. As Dr Kailin was listening to Connors heart he reached out and held Dr. Kaitlin's finger. So sweet. The next part was not so funny. Long story short we had Connors diaper pulled back and sure enough Connor started to pee. But being the great mom that I am, I saved the spray with my hand.  That table was soaked. 

Today's our first fundraising event for Rise. I can't wait to post pictures. 

First Neurology appt

We were able to squeeze Connor in to be see for the flatness on the back of the head. They took a picture and some measurements. Long story short The Dr. Recommended a helmet. Boo. He would wear it 23 hours a day for 3-5 months. I did ask the Dr. If this effects brain development or is it just cosmetic? And it's just comestic. So here's the kicker. Since it's just cosmetic there is a chance that insurance won't cover it. Which means our portion could be anywhere from $1,800-$2,200. It takes 2-3 weeks to hear back from insurance on whether it's covered. It all depends on whether Bank of America checked a little box to cover cosmetic. Honestly, I really don't know how I feel about paying that. I need to do some research. Are there parents out there that turned down the helmet and their child's head turned out just fine? Or any regrets? 

Here's how you can pray. Pray that our insurance covers it. In the event that it doesn't pray that God would speak to both of us on whether we should pay it or not. 

One of our highlights of today was that Connor got to meet one of our old friends, Kristi Wilson Lewis. She works for Texas Children's and took a little break and joined us for our appointment. I loved having her there. Unfortunately I didn't think to snap a pic. But she got some good ones. 

6 month check up

Last Thursday was Connors 6 month check up. Poor dude had to have two vials of blood drawn to test for thyroid and blood count/anemia. In addition he got his 6 month shots. Boo! He was not happy and sleep for about 3 hours. Mr. Big stuff weighed in at 13 pounds 11 oz. the Dr is very pleased with his growth. 

We did get a referral to see a neurologist. The back of his head is pretty flat. It's so frustrating because I really had been working on alternating positions. But the Dr. Reassured me, I was doing what I could and it has a lot to do with muscle tone. She said the neurologist might tell us that he doesn't need a helmet but if he does it's pretty common these days. I'm fine either way. But  I'd prefer he not have to wear a helmet 23 hours a day for the next 3 months or so. 

We also had a AI (they work with partial to deaf kids) come out yesterday to assess Connor and see if we qualify for her services. She asked a whole bunch of  questions and based on our answers, Connor is where a 2-4 month old in the sounds he's making. So we will be adding that service once a week to our others with ECI. She will also be incorporating sign language in that time and I'm very excited about that! 

This is our little buddy after the dr. Visit. They drew blood from his arm :( and he had a whole bunch of band aids from his 3 shots. 

Happy 6 Months Connor Artorius Cancino

I just reread Connor's birth story I posted in early October. There's details I would add or verbiage I would change. I would have probably been a little more honest with some of the dark feelings and thoughts I had. And I will probably go back and make all those changes. But you know what's cool? Even though we are only 6 months in to a life with DS, it's not the end of the world sentence I thought I'd received on September 16, 2013. I think I thought it was only because it was all so unknown. I still don't know what it means to have a DS child. It's all foreign. I wish I could really describe how amazing Connor is. People ask how it is? You know,  Having a baby with DS or as some call it, UPS. My response, he's a baby. Just like any other  baby. Except he's more snugly. One thing that I find myself getting sad about is When I see my friends with babies Connors age and they are sitting up or rolling from back to front and then I realize it's that nasty nasty Satan trying to take my joy away. Believe me friends, I'm excited for y'all. 

Oh Village. (That's you, because it takes a village to raise a child) The way Connor looks at me and the smile I get when someone else is holding him and I start talking to him. It's priceless, it melts my heart to the core.  We were at church one day and I was putting him in his car seat and telling him how cute he was and one of the ladies in the nursery said, Mandy, look at the way he looks at you. Awe. If only she knew how encouraging those words are to me and how close I keep them to my heart. I can't imagine life without my little dude. What if we would have chosen to do testing? And just what if we would have aborted? We would have missed out on this amazing little boy. (Btw 92 percent abort when they find out they are carrying a child with DS. But I'll save that for another post.) 

I want to thank all our friends for being there for us especially the first month. I think that first week I was pretty out of it. I know there were people I wanted to tell personally but didn't want to break down in tears. So they heard via text or through someone else. Or maybe by reading it through his birth story on the big. Because what was I going to do? Have my status say My baby has Down syndrome? Awkward. Anyway, I remember rejecting one of my best friends phone calls the night the doctor told us he wanted to have a karyotype. Only later to text her and tell her I didn't want to talk because I was so tired of crying. But I know she was there for me. And I hope she realizes how important that call was to me. There were actually several of you! There were people that reached out via Facebook with such kind words and stories of other families that had taken this road before us. 

I know our lives are moving at mock speed (or maybe it's just me and having 2 kids) but if you have time, I'd love to hear how you found out about Connor, your reaction, you know, your side of our story. It doesn't have to be anything big. You could write a few lines here, message me on Facebook or shoot me an email. Might turn out to be a pretty cool project. 

Connor started sitting up using his hands yesterday! So proud of him. Connors started eating bone broth and prunes. Such a big boy. Oh and Hunters pretty awesome too. He's consistently telling us when he poops. Way to go boys. 

Feeling blessed

ENT doctor update and my mom!

Yesterday was our follow up for Connors ear. He passed a part of the hearing test but not the other. Part of that could be due to his congestion. So we were going to have to rely on what the dr. Could see. Well, Connor still has such tiny ear drums and canals that it's hard to see. He said we have two options. The first option,  he could do surgery to open them up and that would allow him to hear or secondly we could just wait and see if they grow as he grows. We agreed on the second one. So village, please pray that his ear canal and ear drum grow. We will go back when he's 9 months to access. Not that we would do surgery at that point but we would want to see them growing. One of the reasons we are waiting is because at his age it won't effect his speech. 

If you would also pray for Connors constipation. Long story short I switched Connors formula and he now has more of a solid stool. It's not hurting him but I'd like to see it softer. I'm not a big fan of formula but this is the better option for us out of all of them. Before we switched he was only going once ever 2-3 days but it was loose. Now he will go every day, sometimes multiple times  but they are harder and pebble like. I hope that's not TMI. I'm a mom and poop is now a big deal!  Kids with DS are known to have problems with constipation do to their low muscle tone. So is his constipation caused by low muscle tone or his formula? Ugh. 

Here's my last and big prayer request. It's for my mom. She is having hip replacement surgery tomorrow. Please pray for the doctors and nurses. Pray their are no complications and that she heals quickly. Every time you think about her, would you please pray for her? If you know my mom, you know what an amazing women she is. I love her to infinity and can't wait until her pain is reduced. 

Thanks Village for your prayers and encouragement. We love you!