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! 

A New Chapter

I'm not quite sure where this last month has gone? Time goes by so quickly. I've decided that the more kids you have the faster the time goes. I wish I could bottle up all things Connor. You know?, like the way it feels to hug him, his smell and him wanting to still be held. It just moves so fast. Thats one of the reasons I'm so thankful to be able to have the opportunity to stay home with my boys. As many of you know, last Friday was my last day of working full time outside the household. I told Jason its a good thing, because I'm way too busy to have a job with all my play dates and therapy appointments. LOL! 

Connor's doing good, besides this cough and congestion. Just be praying that he gets over it. Its been around for over a month. 

This week has been really good. God has put some awesome women in my life who happen to have DS kids or as one of them says Downsy Do.  I'm excited to build these new relationships and learn from these ladies. 

Connor has a ENT doc appt. Feb. 3rd so I will up date then. 

Hunter's a rock star, as usual. He's starting to say more 2-4 word sentences. I just want to eat him all the time. And he's so loving with his brother. Last week my mom asked him if he wanted to hold Connor, his response? Okey. And he did such a great job. We also played on the bed. Hunter wanted Connor to "ride" on his back. It was too cute. I can't wait until they can play together. 

Thanks Village for all your prayers. 

Long time, no post!

Happy New Year! I can't believe we have just entered 2014. Looking back on 2013, we have many things to be thankful for and I can see where God worked in our lives. 2014 is going to be the year of change for us. As I made the official announcement, I will be staying home to raise our boys. There's a lot of emotions with this decision. If you've known me long enough, you know I've always had a desire to be a stay at home mom. Its hard to believe that the day I dreamed about since I was little has arrived. But with it comes uncertainty. We aren't just losing my income but we have a special needs child. And we are going to have a lot of extra expenses. And then I remember a defining moment, about 4 or 5 years ago, when all we had in the bank was $6.00. I wasn't sure how we paid our bills but God provided. And he will continue to provide for us.

Another big change that we have coming up is in March, we will put our house on the market and buy another one.  Most of you know that my parents and ourselves purchased this one together. And we've decided its time to separate. I have mixed feelings. Its been such a blessing for my parents to be in Hunter's life every single day. They've been such a great support. So please pray that God makes it very clear where he wants us to live and we get a steal on the house. :)

Jason found out in December that his compensation is changing. And we aren't very excited about the new plan. Long story short we are going to have a positive outlook that God will provide here as well.

My mom has been in a lot of pain over the past few years and she found out that she needs to have a hip replacement. So that will be taking place the beginning of Feb. So please pray for her, that her surgery and recovery will go smoothly and that she will get a lot of relief from her pain.

Now, on to updating you on Connor. We had to go to the Dr. today. He's been sick for about 9 days. He has some sort of bronchial infection. He's wheezing a bit and the Dr. says if that continues every time he gets sick, it might be a sign that he has asthma.  Oh and our little boy now weighs 11 pounds. He's getting so big. Connor's neck is getting stronger and he grasps objects and coos. He seems to be wanting to sit up. The Dr. says he still looks like the back of his head is flat and he needs to do more tummy time. I thought we were pretty good at that. But I guess not. So pray that it resolves. And we will continue to lay him on his side and do tummy time as much as possible.

Another thing that is weighing very heavily on my mind is The Rise School. As I've mentioned before this would be an amazing opportunity for Connor (and possibly Hunter). So we are praying for God to provide. The school is about $2,000 a month. But there is some donor that brings it down to $1560 a month. Then we can apply for financial aid. We've heard that one family pays about $900 for both there kids (one is typical and the other has DS) and then another family told us that they paid $1500 when both kids went. Well, $1,500 is just not an option for us. And I don't feel that God is calling us to go into debt. But I do want the best for Connor so that he can be the best him he can be. Now, keep this in mind that we have to get accepted and we find out in April or May. At that point we will apply and see how much we would pay. Our prayer is that if this is God's plan for Connor that he would make it very apparent and provide for us.

Some more exciting news is that Connor has a new buddy. His name is Carter (Sir, that is). Our friends Jon and Carly adopted Sir Carter from the Ukraine and he has DS. He's amazing and such a fighter. I know Carter and Connor are going to be best buds. And I'm extremely thankful that they are in our lives and we get to take this journey together. They really are amazing people.

So Friends and Family, I know that's a lot. In fact, its all constantly racing through my mind. I know many of you have expressed that you like knowing how to pray for us. So this is where we are right now. Thanks again for praying for us.