Cardiology update

We had a great appointment today! When Connor was born he had a pda and 2 wholes in his upper chamber of his heart. Today we had our first echo since he was a month old. Praise can only be given to God because both holes have closed. He only has a pda and it is small. So we will go back when he's four (2 years from now) and see if it's closed. So pray that it closes. 

Down Syndrome Awareness Month- October

Did you know that Connor should have never made the journey from conception to birth alive? I'm in this pretty awesome facebook group for families with Trisomy 21. The organizer, Dixie, is a Biochemist and Mom of a child with Trisomy 21. Her daughter is older and she has devoted her life to studying the bio chemistry of trisomy 21. (For you science lovers- you are gonna eat this next part up) She says, "the cellular disturbance caused by the domino effect of hundreds of excess proteins is more than enough to completely stop the cells (all 3 trillion of them) that make up the brain and body of a child with DS from functioning beyond a few rudimentary divisions. In fact, only 20% of fertilized eggs with an additional 21st Chromosome actually survive."  20%!!!!!

Yet, here stands my Connor, my miracle, that can only be explained by God's awesomeness. Its our proof of how amazing God is. That life is more than cells. His little body, made of cells, should have never been able to divide. Not even once. And if we consider his surviving parts (all of them), fingers, toes, etc. What about the little persons that survived the journey with hearts that should never have beaten? That a tiny tiny hole or injury to the heart can stop it from beating. Science tells us that Connor shouldn't be here, but here he is.

I don't know about you, but I know that my God is a BIG BIG God. He doesn't always have to explain Himself.  He has put Connor here to do big things. To touch peoples lives, to plant and even lead them into a personal relationship with Him.  He's already reinforced in me to trust that God has a bigger plan then I can see or even understand. The Love and Sovereignty of God is enough.

Let's become comfortable with Difference! Its in that uncomfortableness that we draw close to Him and the unknown becomes familiar.

Happy 2nd Birthday Con!!!!

Happy 2nd Birthday my little buddy! I love you more than I could ever express. I'm sad to say Your birth quickly changed from one of the most happiest days to the darkest day of my life. I regret that I let Satan steel my joy that day with your diagnosis. I was afraid of the unknown. I was afraid of losing you. Little did I know that God choose me to be your momma because we are a perfect match. Because he knew I needed you. This past 2 years I've drawn close to God and played these words over and over from the song, Oceans by Hillsong. "Spirit lead me where my trust is without borders let me walk upon the waters wherever you would call me. Take me deeper than my feet could ever wander and my faith would be made stronger in the presence of my Savior." Connor you have pushed me to rely on Jesus more. To trust him. To know that He is going to give me more than I can handle so that I look to Him for my strength. I have a closer relationship to Him because of you. Thank you. 

Connor you have an amazing ability to light up the room. To put a smile on someone's face. You are a blast to be with! You give the best snuggles and your open mouth kisses, oh my! You are already a teacher of life. I'm patient, yet anxious to see, how God continues to use you to teach life lessons. You make others comfortable with differences. In the wise words of Emilia Armendariz, "He's the best baby ever. I wish he could be my baby when I'm a mommy."  Connor, you melt hearts. 

I love how you adore your brother. I can't wait for the day when Hunter tells me that you are his best friend. I recall one day when Hunter had hurt himself and he was crying, all of a sudden you started crying too.  Because you felt Hunters pain. It reminded me of how Jesus feels our hurts, pains and joy. 

I thank God for protecting me from what I thought I wanted, but blessing me with what I didn't know I needed. Connor, I need you. 

Love you always, Connor! 

BOLD(er) than what we thought we could be for our family

I was on my way to pick up Connor for Physical Therapy. I wasn't in a rush, I had my cell phone in my purse, and no kids! I was distraction free. I was about a minute from Connor's school. I had just exited 288 and when you exit the road goes up and you hit a stop light. My light was green but as i was going I looked to my left and a car was coming pretty fast. I thought, this person is going to hit me, I laid on the break, and embraced the hit. The next thing I know, my sunglasses flew off. I remember thinking can I see? Because sometime I wear my glasses and was quickly reminded that they were sunglasses that landed on the floor.  I was now facing the direction she was going. I was hit along the Drivers front side. The airbags exploded on drivers seat and all along the the left side. I couldn't put the car in gear. I remember getting out and it was slowly rolling, so I put on the emergency break. I tried to get out quick because when the airbags come out it smells like smoke and I didnt know if the car was on fire. We had no witness' except 2 homeless guys. I remember 1 going to check on the other car and then walking away. The other one, came to my car and grabbed a piece of it that had fallen off. As I'm watching him I'm on the phone with 911. The lady got out of her car and came over as I was finishing up the 911 call. She said her light was green. But she also told me that she was on her way to the hospital, her husband was having heart surgery and that she had to sign some papers. Which tells me she was distracted. She was also having trouble with her phone. Which makes me believe it was out and thrown from her hand. Whether she was on it, i'm not sure. I do remember her sitting in her car for a couple minutes before getting out. She also didn't have a driver's license. Anyway. I was a mess. I called Connor's school and they sent someone to be with me and get almost everything out of the car. We couldn't get any of the other doors to open, except the driver's side. What if one of the boys was in there and I couldn't get them out. I couldn't stop crying. I think its because i kept thinking, what if the boys were with me. What if Connor was in the car, its on his side. The policeman got there and we moved the car. Then i texted my friend Carly, who also has a child at Rise. She was working that day and wouldn't be at school, but as soon as she heard accident, she was on her way! She's so amazing. I LOVE HER! One other than I'd like to recall is the police officer called the homeless guy by name and grab the liter of alcohol he was drinking. He was pretty out of it. (Please note this paragraph is partly to share and partly for me to give to insurance if needed)

Here's where its important. Our church is asking for a commitment over the next two years that will go towards buying land, missions, and then our general fund. Last Sunday we made our commitment. On Monday Jason and I talked about giving more than what we committed too and we would pray over it. But we knew in our hearts what we were going to give. As I was waiting for the police, I knew this accident was because we were being obedient to Christ. We were doing what was BOLD for our family and Satan was trying to stop us. But you know what Satan, you just confirmed what we needed to do. Thanks for making that decision an easy one.

God is such a conductor in an orchestra. My parents were ready to get out of their lease with the Mini Van. Jason would have preferred we waited one more year, but the deal was so good, we knew the car was in amazing shape (thanks to my OCD dad), and we wanted the room to take extra kids with us. If we would have waited and If I would have been in the accord, I'm not sure what that would have looked like. Hunter had school, so my dad picked him up. That's why he wasn't in the car.  So once again, I see and feel God's protection, His goodness, His strength, His mercy, His power, His grace all over what happened yesterday.

Well, Hello 2015

Someone once told me when it comes to raising kids, the days seem long and the years are short. Whoever came up with that is a pure genus. I can't believe another year is gone. You know what else I can't believe (or maybe i can, lol) We are in day 7 and we have almost hit our deductible and are on our way to hitting our coinsurance. I guess its good to get it done in the first part of the year.

Our long awaited Sleep Study happened today. So here it is: Connor has mild apnea. His oxygen level never dropped below 87% which is good, he stopped breathing 3.5x in an hour, and 10x when he was in his REM cycle. Now this was before he had his adenoids removed, fluid drained and tubes put in. 1.  I believe it was God's healing hands and that surgery that cleared his congestion. 2. If the study had been done after the surgery the results might have been different. But please continue to pray the congestion doesn't return and pray for me to trust God and not worry about the congestion coming back. Seriously, I'm so insecure about it. Especially because I've seen how much happier he is.

This was Connor at his sleep study

So what's next now that we have those results? To consult with the Pulmonologist and the ENT doctors. This coming monday we have a follow up appointment with our ENT dr. for the surgery and I'll visit with him. Our neurologist (who told me the results of the study), said he might want to have his tonsils removed, or just wait, or even do another sleep study (woohoo, I hope this is the one that is chosen-in my most sarcastic voice). We are also seeing the ENT doctor to see if his hearing has improved. Please pray with me that he passes his hearing test with flying colors. If not, they will have to do what is called an ABR. Connor had this done at about a month old. But because he is older he will now have to be sedated. Kids with Down Syndrome are known to have a harder time coming out of sedation. And plus I'd rather not put unnecessary junk in his body if I don't have to.

Another area you can pray for Connor on is his acid reflux. Pray that God heals his body and we won't have to deal with that challenge anymore.

Our Physical Therapist suggested that we get orthotics for Connor. So we have that appointment tomorrow. Orthotics are special inserts that go into his shoes that will strengthen Connors ankles. Which will help him stand and walk. (Can you see how we are hitting our deductible and coinsurance so quickly) But seriously. I'm so thankful that our insurance covers them and that Jason has such a great job and great insurance.

Connor starts school on Tuesday! Although I've really enjoyed my time with him, I'm ready for him to go back. They are just so good at what they do.

Just a reminder- World Down Syndrome Day is March 21st- It was so emotional for me to see so many people taking selfies of themselves, their kids, and family wearing yellow and blue and holding up signs that said We love you Connor! Look, I'm getting emotional right now thinking about it. I made the most amazing book for him and I'm hoping its just out of control this year. Here are a couple from last year.

OMG I had to practice self control. I just wanted to add all of them!

April 25th- Is Connor's schools annual 5k run and walk! We would love for you to join our family in the walk. I'll have more details the closer we get.

Hunter is doing great! i love when I walk in on him kissing his brother on the forehead. What a special bond that they will have. He's growing by leaps and bounds and I just can't believe it. My first baby is growing up to be a little man.

Last post of the Year!

Once again, I have a ton of things to update on. Where to start, where to start?

Sleep Study- we are awaiting results. Follow up appointment is Jan. 7th. They said if there was something urgent then they would squeeze us in. So I'm gonna take not hearing from them as a good thing.

Cardiology- We saw the cardiologist before the sleep study and we had a scheduled echo. But he pushed it off until he is 2. Once again, another good thing.

Ear, Nose and Throat (ENT)- December 2nd we had tubes put in, fluid drained and adenoids removed. Everything went smoothly! Recovery took about 2 weeks before he was completely himself again. We have a big Praise here! About a week ago his congestion disappeared! No runny nose, no congestion when he's eating, he's sleeping better! Its awesome and we give God all the glory!

Part of the sleeping better is because Jason did a little sleep training. I did it with Hunter but for some reason I'm a whimp with Connor. But I guess thats why Jason and I make a good team. We balance each other out in so many areas.

Two weeks ago, our OT at our school called and said that she was attending a Feeding Course at Texas Children's Hospital and they needed some demos. So the speech therapist from North Carolina assessed Connor. We got some great pointers on things to assist him with when eating.

Our private therapy with OT, Speech and PT has been great. One of the best decisions we made to go privately. They just have more experience and equipment then ECI can give. I'm just thankful for the insurance we have.

Our PT (physical therapist) has recommended that we get Connor orthodic inserts. These will go inside his shoes and help strength his feet. Pray that this is only short term. Its not a big deal but I'd love for it to not be one more thing! We were hoping to get this done before the new year, since we've hit our deductible but thats not gonna happen. Oh well. I guess it will help us meet our deductible and coinsurance quicker next year.

We got to visit Santa and I think we got the Perfect picture ever!

Raising an Extra needs child (I've started saying extra instead of special because all our kids have some kid of issues) has also been such a reminder for me on how I need to depend on Jesus and ask him for help!  I'm not gonna lie. Its hard but I wouldn't change my life. 

Here is a quick review from 2014! Please continue to pray for us (specifically for me) in the decisions I have to make for Connor and Hunter. Pray that God continues to provide for us financially so that I can continue to stay home! 

Thanks again for loving on our family and praying for us! 

Connors sleep study!

The sleep study went really well. Considering he had so many things attached to his body, head and face! Don't get me wrong it wasn't a cacation but it also wasn't a nightmare. So many people told me that the techs would come in a lot and the room wasn't comfortable etc. but our tech was awesome and only came in when one of the electrodes fell off. Connor completely woke up once, moved around a lot and made some noises making it hard for this mamma to sleep. But we survived! Let's pray we don't have to do that again. Oh and it worked out that we were the only ones there. 

As far as the results go I couldn't get in until January 7th. So unless there are major red flags I have to wait. 

Here's where you can pray: that everything is good and that he wakes in the night because of congestion which makes it hard to breathe. Could you also pray for Connors congestion to clear up? I do feel it's getting better.  We are getting tubes on Dec. 2 and they will be draining the fluid and possibly removing adenoids. Please pray everything goes smoothly and we won't have any complications. 

Love you guys!!!

Horrible pic but this was him waking up. Jason said he looked like he had been in a car wreck. It might just be me but is this kid never not cute?