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

God is good!

It's been another busy week of appointments. We had the three hour hearing test on Wednesday, Thursday was the Eye Doctor and Friday was the Pediatrician and then an ultrasound. So here is the update!
Praise Jesus that Connor can see. He only has a blocked tear duct. We will go back in 9 months and if its not better, then we will do an in office procedure. But we are so thankful that Connor has his eye sight.
Friday at the Pediatrician, they took more blood to check that his thyroid numbers are going down and did a weight check! Praise him. He had gained 11 oz. in one week. The Hearing Dr. recommended we see a kidney dr. But instead, Dr. Otness recommended a kidney ultrasound. So after our appt. with her we went down stairs for a quick ultrasound. We got the results back later that day and he has healthy kidneys. Woohoo.( I guess when you have hearing loss that can somehow tie in with your kidneys.)
It seems like when you go to one Dr. appt. you end up with 3 more. LOL! It's the story of my life right now. And I'm just thankful that I'm able to take him, that we have health insurance, and that we live in Houston where there are amazing Dr. to choose from.

We only have one appointment next week and that is with the Ear, Nose and Throat (ENT) Dr. What will I do with my time? Honestly, I'm not sure what to expect or what they could tell us at this appointment. Other than it ties in with Connor's hearing.

I haven't gotten any bills from the Health insurace company. And that kind of scares me. I'm praying that I don't have to do a lot of follow up with what they should or shouldn't cover. Yikes, I've got a headache just thinking about it. (well not really cause I know God's gonna sort it all out)

So this week, please pray for the following:

That I don't have to spend time following up with our insurance company
Pray for the ENT doctor appt. and that we are able to get clear direction and information

Thanks again for your prayers!

Well, this morning we went to the Audiologist. Its not what I prayed for, but God is good. Connor has permanent hiring loss that is mild to moderate in his left ear and his right ear is perfect. The Dr. said that in "theory" he shouldn't have any speech problems due to the hearing loss. So that is what we will pray for! I'm even gonna pray that God chooses to heal Connor's ear. But even if he doesn't, my God is great! We will follow up with the hearing in 6 weeks for another test. But I'm thankful he's got one good ear. She also recommended that we see an eye doctor because blindness and hiring loss can be connected in addition to kidney problems. So I will be making an appointment with a kidney doctor in the next few weeks

So in recap, here's what you can pray for:

Connor's hearing to be restored to 100 percent! If not, that it won't impede his speech
Pray Connor doesn't have any eye problems and that he can see with both eyes!
Pray for Connor's kidneys that they are healthy

And please continue to pray for big brother Hunter! That he will continue to positively transition at Mother's Day Out and at home with having a little brother!

You guys are so awesome! I love knowing that we have people covering us in Prayer.

Connor's birth story and our unexpected suprise

So, it turns out I started a blog back in 2007 and I did one entry. LOL. Lets hope I do a little better this time around.

I guess I'll start by telling Connor's birth story. I woke up on September 16th at around 6:30a.m. with contractions. I timed them and they were consistently coming between 7-9 minutes apart. I texted my go to girl, Julie and she recommended calling my nurse. So I did just that around 10a.m. and left a message. I was very calm and laid back.

 In the meantime, I had a perfect day planned for Hunter and myself. I wanted to make one of his "last days" as a single child fun. Since I hadn't heard from the nurse, I decided to go ahead and take him to Barnes and Noble to play with the train set. Sure enough, we'd been there about 15 minutes and the nurse called and told me to go ahead and go to the hospital. So I texted my hubby and told him to meet me at the hospital. And had my dad pick up Hunter. It was go time! And I thought I was ready for Connor.

I was definitely having contractions and they were consistently 2-3 minutes apart, although I wasn't really dilated. So our nurse, Tracy, made the call that we would be having this baby and he would arrive before 3p.m. I called my mom (who was awesome and stayed with Hunter) and told her we would be having Connor and around what time, so that she could be there when we came out of surgery. She's such a super mom and gramma. I'm thankful for both her and my dad.

I couldn't believe how easy this C-Section was.! Jason said, I don't know why we didn't do this the first time. (lol)

So, at 2:29p.m. I heard the first cry from my precious Connor. I remember asking if he had red hair and if he was healthy. The answer was no, he doesn't have red hair and yes he's healthy. He was beautiful! And I didn't have any other thoughts.

Later that evening, Jason had stepped out to pick up a few things from the house so my brother in law and sister in law stayed with me. The next thing I know the Pediatrician on call within our practice came in and asked that they step out for a moment. I knew at that point something wasn't good. The first thing he asked was, Who do you think Connor looks like? My response was me! His response was that he didn't think he did. I said well my husband is Hispanic. He looks a lot like the guy who just walked out of the room. (I guess he was trying to figure out if I was married to an Asian??). This next moment would change my life forever. The Dr. told me that he would like to run a blood test to see if Connor has down syndrome (DS). His eyes being slanted and he had a big space between his big and second toe were red flags for him. He also made me aware that the test could take 2-3 weeks to get results back.

My heart shattered and I ran into a brick wall. I was shocked! How could this be? The possibility that my little guy has DS??? . Minutes later my hubby walked in and I had to break the news. That night I cried and cried and cried and my husband just held me. Is there anyone I would rather do life with, than that man? No way! God surely blessed me with an amazing man. So we prayed and prayed that God would heal Connor from this diagnosis.

On Friday, September 20th, I got the call from our Pediatrician. It was confirmation that Connor did have an extra chromosome. And officially had his diagnosis of DS. And once again, I cried and cried. There were so many thoughts running thru my head like, I don't want this for Connor. I don't want this for us.  I had regret. He's going to live with us the rest of our lives. Will he have friends? What will people think? What about Hunter? We just gave him a huge responsibility later in life. My idea of perfect and what I thought we "looked" like was stripped. I wanted to ask Why God? But I know Why. We are perfect for our little boy! And Hunter is the perfect Big Brother for him. But knowing this is my heart just doesn't make it any easier.

The love and support for us and Connor has been awesome. And we feel it.So thank you for your encouraging words, thoughts and prayers. I plan to put them in his baby book. Here are a few, "Remember that (DS)  doesn't define him..."; "Please don't forget that we live in a sin filled society that lessens the ones that aren't perfect.. Don't be swayed or overcome by that. It isn't truth. Connor has been made in the image of God just as we have been. Take heart and let Love conquer all. You are my brother and sister in Christ and we will all stand as one family, Children of God and have each other's back when times are rough and celebrate when times are joyous. We are praying for you guys continuously." I had one person tell me that she believes DS kids are the closest to what God intended for us to be before sin came. They love unconditionally, they don't judge, they are full of life.

I'm definitely grieving and I have good days and days that I'm a little sad or mad. I know this is going to be a long journey. But one that is rich and will direct us more and more towards our maker. I know that we will be blessed by Connor just like Hunter has blessed our lives. Life is so valuable. I'm learning to stop and really enjoy today and the moment that is given to us. Because we aren't promised tomorrow and we don't know what it holds. But I do know that God is good even when we feel the darkness. He's there. These trials are where we grow and become more and more like who he has called us to be.He's always taken care of us in previous trials so I know that his plan is much bigger and more amazing than I could fathom.

I think this story does a great job of explaining where I'm at right now....

WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved

July 25, 2012 at 4:09pm

WELCOME TO HOLLAND

byEmily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Trusting His plan for us,

Mandy