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!

More progress

Today we had ECI (early childhood intervention) came out to assess Connor today. ECI is a program that serves families with children that have developmental delays or disabilities. Connor automatically qualified due to his Down Syndrome diagnosis. They offer services like Occupational Therapy, Physical Therapy, and Speech Therapy to name a few. They determined that Connor will get Occupational Therapy 2x a month and then an Early Childhood specialist (there was a different name but I can't remember) will also come in 2x a week. So every week we will have someone visiting and working with Connor. The way i look at things is that I'll work with him mostly and they will supplement by showing me what I need to be doing to make him stronger and hit is developmental milestones!

I think its hard for me to believe we have a child with special needs because Connor is just a newborn. I think it will get a little more real as he grows and might be delayed. But I can't imagine any other person raising him. I'm thankful that God choose us and that we accepted. We accepted the moment I said no to genetic testing. I had several people ask me if I regret not getting genetic testing and being able to prepare. My first comment is why? The outcome wouldn't have changed our mind. We don't believe in abortion. Each life is valuable and each child is created in God's image. Plus I think I would have just worried the entire pregnancy

.

I've had so many people reach out to me that I don't know that are connected to Down Syndrome! Its awesome! One mom posted this on her status: Someone had commented on her adopted son with DS and said he doesn't even look like he has DS. That person said maybe God is pulling one over on them and healing him. Here are her thoughts "While we do live in a broken world... I'm finding that so many things that in our human understanding we would wish away, are really the things that bring us closer to a good God, uproot sin in our lives and through may bring temporary suffering ultimately bring a deeper joy and a much more lasting peace. If we viewed life as God does... I don't think we would want to "heal" DS or any other special need" 

Even though I hurt for my son, both my sons. This is not heaven. And its through the hard situations and challenges that will bring us closer to Him. So my prayer is that anyone that has interaction with me, my boys or my husband will see Christ in us and be impacted by that!

Thankful,

Good News, No Great News

This week we had an ENT appointment. But I wasn't really sure why we were going and what we were going to find out. I know, I'll get better at asking questions, but two drs. told me to go!

Anyway, the Dr. said he doesn't believe that Connor has permanent hearing loss in that left ear. That as his ear canal gets bigger it will go away. And if it doesn't, its so minor that we can put a tube in and it will fix the problem. Thank you Jesus.

Please continue to cover our family in prayer. I'm not sure what to ask for. Just cover us in prayer.

Thanking God for so many friends and family that love us!!!!

Mandy