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.

Rise School

Yesterday my mom, Connor, and myself went to check out Rise School. Its an amazing school that works with kids that have down syndrome and other developmental delays. The ratio is 3 kids to 1 adult. They have different therapists that come in and work with the kids in the classroom. They go Monday-Friday from 8a.m.-2:30 every day. As we toured I could just tell that the Employees love those kiddos. And I couldn't believe how clean it was. Jana (the lady giving the tour) said they have a certain accredidation that only 7% of schools actually get.  (that deal with cleanliness.)  Within the class they also have "typical" kids,they believe kids learn from their peers. 90 percent of the kids that go through the program (age 9 months-6 years of age) are mainstreamed into the school system. That is awesome.
Here are the challenges. The school is $24,000 a year. Yep, you read that correctly. But when talking with the coordinator there are big donors that help bring the cost down to $1,500 a month. And then they take in consideration how big your family is and how much money you make. Well, $1,500 is not even doable for us. So please pray with us that if this is where Connor is suppose to be that God will provide the money for us to send him there. I'm not sure what that looks like. Maybe they would be able to get that down even more??? But first thing is first, we have to get accepted.

So here's how it works. There are approximately 12 spots for Connor's age group. She couldn't tell me where we were on the list. She said sometimes they call and a parent isn't ready to send their child so we would get bumped up. So if there is a spot for us the director will call us in April/May. We would then fill out a application and financial packet that would determine our cost. Then they will give us a few days to decide.

On another note, I'm back at work and had to go up to the campus for the first time. As I was visiting one of my collegues asked about Connor and if he was healthy. I said well, he was diagnosed with Down Syndrome and then I started to cry. Ugh. I thought I was finally to the point where I wouldn't cry when I told people. Why am I crying? Is it because I love that little boy so much and I don't want him to struggle? When in reality, every child is going to have something they struggle with. Or am I still holding on to what I think perfection looks like? I'm not sure. Maybe its both or maybe even more.  I'm obviously still struggling with it off and on.  The fact that I have a child with DS. But you know what my collegue said in response to the news, Congratulations! It was the most perfect response.

Hearing update

Yesterday we had a follow up appt. with Connors hearing Dr. She did an ABR test that takes about 3 hours. Connor was a champ and completely cooperated. Which means he slept peacefully in my arms. We have great news.  His hearing has improved. She confirmed what our ENT Dr. Said, that his hearing loss is due to built up fluid and congestion. And he should grow out of it.

On another note pray for Hunter. He has his first case of head,foot and mouth. He's especially uncomfortable at night. Nothing like being sick around the holidays. Pray for our family that none of us get it. Especially Connor. We are on day 4 but just figured out last night what it was.

I'm on my iPad so this peck typing is killing me. Have a great Thanksgiving. We have so many things to be thankful for.

Connor's growing

I can't believe Connor will be 2 months tomorrow. The time goes by so fast. I told Jason the other day that I sometimes forget that Connor was diagnosed with DS. And that's the way it should be. Right. If I'm going to be honest, I think when I first heard that Connor had DS I felt a death sentence had been put on me. But that was only Satan stealing my Joy. I love the song, I'm trading my sorrows- because its true, Joy comes in the morning. That little boy has been such a joy to our family and he's only 2 months old. (well actually he's not always a joy at the wee hours of the morning. But I'm thankful. I continue to process the idea of Connor's diagnosis and what that means. And I keep thinking about how each family has their own sets of challenges, its just a part of life. When I was little I dreamed about being a mommy. Just like any girl does. But I never realized it was going to be so hard. I felt this way with Hunter too! Any time he got a cold or his eczema flared up, I'd call one of my closest friends who happens to be in the medical field and she would reassure me that all was fine. But being mom is a constant battle about making sure you make the right decisions for your kids.

I'll stop rambling and lets get to the update on whats been going on with us:I went to the Buddy Walk last Saturday. It was quick and I didn't get to stay very long, because I had to make it to my niece's first birthday party. It was emotional for me and I'm not sure why. I guess because it was awesome to see everyone rallying together. And that fact that I'm still processing everything.

We went to the Doctor's office for Connor's 2 month check up! He weighed in at 9 pounds 5 oz. and is 21 1/2 inches long. Our Dr. was very pleased with his growth. We also found out that Connor ended up getting approved for a shot called Synagis. Our Dr. had to do a peer to peer discussion with our Insurance company to get it approved. Apparently the shot is very expensive to produce so the insurance company buys it from the pharm company and they send it directly to the doctor's office with Connor's name on it. He will it a shot 1x a month until March to protect him from Respiratory Synctial Virus (RSV). You can go here to learn more about RSV  http://kidshealth.org/parent/infections/lung/rsv.html

We have an appointment with the Occupational Therapist today and will continue to see her every other week.

Mr. Hunter is doing awesome at school. He walks right in and plays with his buddy Kane. We no longer need a snack or blanket. He has been getting in trouble for  hitting. Really? My perfect little boy. LOL!  So we are working on that with him. But the big news is that he turns 2 on Monday. Yep, you read that right. I can't believe my first baby is growing up so fast. He's a solid 30 pounds.  And an absolute blast to be around. (When he's not whining)

Here's how you can pray for us:

Pray that I can start working on getting into a schedule with Connor, I like predictability and schedules. And Sleep!  :)
Pray that Connor hits milestones the same time frame any other "normal" child would. In fact, pray that he exceeds expectations
Pray that Connor doesn't have a negative reaction to Synagis (RSV shot)
Pray for good health for both Connor and Hunter
Pray that Hunter never feels resentment for his brother. Especially if we have to spend more time going to appointments and tending to Connor
Pray for Jason. There are some compensation transitions at work and the prayer would be that it would benefit us and not hurt us.

Wow! That was a long blog. Thanks for sticking it out.

Lots of Love! Comment if you want to share something you would like for us to pray for!