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? 

A well over due update

Do you ever have the feeling that time is just slipping from your hands and you have no control? That's how I feel about this past month.  In October we had 11 appointments including speech and physical therapy appointments, well check ups, sick appoints, and multiple appoints with Specialists and getting blood drawn. That didn't include Connor's therapy.

We also made the decision to switch to Private therapy for Speech, OT, and PT.  Which means we will be meeting at a location instead of having therapy at our house. I'm not excited about being gone so much from the house but I'm excited about the progress we are going to see. Starting next week my weekdays are going to be very busy.  Connor's school is Monday-Friday. I'll get him out of school early on Mondays for Speech and OT. Then Tuesday and Thursdays I'll pick him up early for PT. Wednesdays we see the Chiropractor, thank goodness that takes all of 5 minutes. Oh and Tuesdays we see an individual that works on Connor and him hearing sounds. But thats at the house. Sounds like a lot, huh.  Thank goodness I have my parents to help with Hunter. That would be a lot to drag him around too.

Speaking of Hunter. Tuesday the 18th, my sweet boy turns 3! I can't believe it. He's just so much fun to be around. I love him so. Its been fun seeing his personality develop and watching him figuring out what he likes and doesn't like. Its also been neat seeing him slowly fall into the role of a big brother. He's really going to be the best big brother for Connor.

Back to updating Connor. We have two big appointments coming up. We have a sleep study next Wednesday. Please pray for Connor that it goes smoothly and that they don't find any major hiccups that can't be easily fixed. We've also decided that we will be putting in tubes and draining the fluid in both ears. My prayer is that will fix Connor's hearing. I'm a little nervous about him being sedated. We had scheduled this for the first part of December but it would be out here in the suburbs. I'm rethinking my decision and will probably change it to January (first available) in the medical center. This is also dependent on the approval from the cardiologist.

I have about a hundred more things that I could update you on but I think I've covered the most important stuff.

Before I go. A special thanks to everyone that has donated to the Rise Silent Auction happening a week from Thursday! I have the best support system for Connor.

Pumpkin Patch

Halloween

Doctors Doctors and More Doctors

Ahhhh. October is becoming the month of Doctor appointments. Last Friday we had our swallow study which showed he is aspirating on liquids. What this means is that liquid is entering Connor's lungs. I feel God's hand on Connor because a lot of times aspiration causes pneumonia and could have put him in the hospital. So props go to our Occupational Therapist at The Rise School.

Today was our appointment with a neurologist. At first, I wasn't sure I was going to like him. There was no one in the waiting room and from the time I arrived until I saw the doctor was close to an hour. But he totally redeemed himself when he walked in the room and started interacting with Connor. The outcome of this appointment is that we are waiting for a call to set up a sleep study. I hope to complete this the first part of November.  I'm not looking forward to this but I'll take it for the team. Its the least I can do since Jason agreed to Potty Train Hunter. I know, I know. My husband is the bomb. I'll be going to get some lab work done on Connor on Friday. Pray that the person taking his blood is good. They will grab blood for a complete CBC, Thyroid, and Celiac Disease. He also wants Connor to see a pulmonologist. This is a Dr. that will look at lung conditions and disease. We see this Doctor on Thursday of next week.

So on top of these Doctors we have a follow up with the Cardiologist, The 12 month check up, oh and we saw the ENT dr. earlier in the month. I feel like we are back to the first 2 months of Connor's life. Please don't get me wrong. I'm very thankful to have insurance and have all these appointments to constantly be monitoring Connor.

Our God is good! This isn't an easy road I've been given but the things that are worth the most are never easy. Please join me in Prayer over Connor's heath- mentally, physically, emotionally and spiritually. Pray that God will give wisdom and His knowledge to everyone that comes in contact with him.

Blessed to be Hunter and Connor's Mommy,

Mandy

Happy First Birthday!! We survived.

It's been a whole year since my sweet baby boy was born. He's one of the most amazing things that's happened in my life. In fact I'm blessed to be his momma.  But I sure didn't think that the night he was born, when the pediatrician told me they suspected Down syndrome. In fact that joy that you feel when your baby is born quickly turned to fear and I cried non-stop for the next few days. Looking back It makes me so mad that I let Satan steal my joy during that special time. It took me longer to bond with Connor but it was only out of fear of the unknown. I was protecting myself from being hurt. I knew nothing about Down syndrome. But man, do I love this baby! I can't stop kissing him. So if I could tell a mommy that is just finding out that their baby has DS. I'd tell them congrats, its gonna be ok. You've just been given an invite to one of the most amazing communities. You're next year will be challenging but worth it all. You will be sad when your friends kids crawl, walk, and eat table foods on time. But you will get to enjoy your baby a little longer. And when they do hit those milestones you will celebrate like you won the lottery. And before you know it, a year has passed. Connor you light up the room with your smile and your zealous love of life. I love that you would rather interact with people then play with toys. Gods got big plans for you, my son. And I can't wait to see what all is in store for you. Happy First Birthday! I love you more then you will ever comprehend. 

Update Friday

Well, the Eye Doctor went really well. He has healthy eyes and they are where they should be for his age!!! Woohoo. We went to the University of Houston Eye Clinic and they did a fantastic job. Its amazing how they can tell if a child is having difficulty seeing when they are too young to read. 

Our Pediatrician appointment went good. There are just so many unknowns.  I asked most of my questions, like why would he be fine and then all the sudden this is showing up and he is now in pain? Could this be an allergy to milk? Could the congestion be caused by the facial structure of a child with DS? So long story short. She said if we try all these things at once, we won’t know what is working and what is not. We decided to try Prilosec for 10 days. If we see a difference great, if not then we can take him off it and try the next thing. If it does work, we can take him off every few months to see if there is still a need. I hate drugs and giving my children any meds but I feel at peace with this decision.  

She said that even though the congestion sounds like it is in his chest it isn’t. She said that his nose and ears look great. But we will use saline when we feel he is a little more congested. We see the ENT on Sept. 29th, so I will further discuss with him. 

We also received the RX for the Sleep Therapy. So I will work on getting that set up. If you are reading this and have experienced any of the problems we are having, please feel free to chime in.

Oh and I just turned to look at Connor and he had gotten up on all fours and held for about 3 seconds. Who knows maybe he will be crawling in the next month or so. 

Again, thank you for your prayers and love for our family and Connor. 

Pray for us tomorrow

I've got a busy morning with Connor tomorrow. We have a Eye Doctor appointment at 10am. at University of Houston Downtown. They specialize in kids with disabilities. This is just a routine exam to have a base line. So I'm not expecting any concerns to arise.

But we are squeezing in an appointment at 8:30a.m. to see our Pediatrician. This came about because of the concern by those that care for Connor at Rise (teacher and therapist). Connor's always had congestion but it has seemed to gotten worst and if you put your hand on his chest and back you could feel the rattling today. Connor's congestion has always bothered me but it has become his norm.  We do have a swallow study set for October 3rd, but his Occupational Therapist (OT) and myself both agreed that we feel like he needed immediate attention regarding the congestion instead of waiting for the test or his 1 year check up. The OT's concern is that he either has Acid Reflux or is Aspirating. Or could it be a milk intolerance? Or could it be his skeletal structure of the mid-face and of the throat area that tends to be rather cramped so that drainage of normal mucous secretions is messed up. When Connor first started Rise the teacher pointed out that when he got up from his nap he seemed good and then after he would eat he would get congested. So, please pray for the Doctor and that she will have wisdom from God when we are talking through this in the morning. And that we can put together a plan that will be perfect for Connor. Pray for me! It really upsets me when I know my baby is struggling and I just want to do the right thing and get him cleared up.

I will also have the Dr. write a prescription to do a sleep study. The teacher noticed that when he sleeps at nap time that he stopped breathing a couple times. This could be due to the congestion. That is at least what I'm praying for. So add that to your prayer list as well.

Oh and I can't believe this little snuggle bunny is turning ONE on Tuesday. Ugh. I look at this picture and I want to run upstairs and squeeze him...LOVE HIM SO MUCH

And I love you sweet family and friends!

Hello Rise

So we just completed Day 4 of Rise. I love this school and I hope I always feel that way. (I hear some of you now, I know it's only day 4) I love that the director and the staff are in the lobby and outside for drop off and pick up. I love that on day one the director and other staff not only knew Connors name but mine and Hunters as well. I love that I have complete confidence in his teachers and staff. His teachers have been there 3 plus years. I love that they love on Connor like he was their own. I love that he gets group therapies. Gosh I'll have to continue to add to this list. But you know what I love the most? That they delight in his accomplishments and that they are there to push and encourage him to be his best. Look at what our little guy accomplished today? That's right, he not only drank his entire 7 oz of milk out of the honey bear but he held it himself. Way to go Connor. This pic was taken before school. But I can't figure out how to upload the video of him doing it. Boo

Why My Boys Take Fermented Cod Liver Oil

I've been wanting to write this post for awhile. Specifically for a friend whose daughter has eczema. I read all kinds of health blogs and have known we should be consistently taking FCLO because of all the benefits. I bought it when I was pregnant with Hunter but couldn't choke it down. So about 6 or 7 months ago I started Hunter and Connor on FCLO. At the beginning I had some resistance from Hunter but now he takes the chocolate flavor like a champ. And Connor, he's just a stud. I have him taking the unflavored liquid FCLO. You know, the stuff that I couldn't get down. Hunter has eczema and I've seen a huge difference in his skin. We haven't seen any eczema in Connor, so I'm hoping its the result of him taking FCLO preventatively.

So here's why we take it:

1. Its Rich in Vitamin D-

• This supports Immune health and fights infections (Connor needs all the help he can get). 
• Cancer Prevention
• Low levels of Vitamin D are associated with thyroid (DS kids are known to have thyroid issues and I'd like to do all I can to help prevent)

2. Omega 3 fatty acid

• Reduces inflammation
• Reverses Eczema-tightens pores of go tract and prevents toxins and pathogens and partially digested foods from entering the bloodstream and overwhelming the blood stream. Because immune system is partially wired to the gut, omega-3 fatty acids prevent hypersensitive reactions to immune system. Which means the ahi-inflammitory and anti-allergy properties of omega-3 can heal eczema. (http://www.progressivehealth.com/a-natural-oil-to-help-your-eczema.htm)

3. Rich in DHA

• Brain development- why not take something that is non-synthetic

There are so many more benefits to FCLO but those are the top 3 reasons I have the boys taking it. 

We choose Green Pastures because of the way it is processed. Green Pasture extracts without heat and is preserved thru a slow fermentation process, keeping all the vitamins. 

Hello 35!

Well, Hello 35! I'm not quite sure where the time has gone. It seems like once you have kids, it just moves so quickly. I love the saying, "The days are long, but the years are short". So true wise person that said that.
I got a text from a friend a few nights ago sharing with me that she had a miscarriage. Ugh. It reminded me that 5 years ago today, I had my first miscarriage. And a piece of my heart broke all over again for her. But time with God's hand, does mend the breakage.
I'm meditating on how fortunate and how God's favor has been in our lives. It's not been easy, but its been a beautiful ride. 

PS I promise to update after Connors first day of school. 

9 months already. Well I mean 10 months because it took me so long to finish this post

This post is well over due. Last Friday we went in for our 9 month check up. Connor is a big old whopping 16 pounds.  Since our last post Connor can now sit up independently. He still has a spill occasionally but does such a great job. Now our focus is crawling and and drinking from other than a bottle. Please pray he catches on quickly and I can ditch the bottle around 1. 

We went to see a nuerosurgeon in early May. Connors head is flat in the back and the measurent was slightly over where they prefer so they recommended a helmet. But after prayer, we decided that we would pass on the helmet for several reasons:

1. In Connors case it was cosmetic only

2. We live in Texas and it is hot. My son is already warm blooded and I know he would be miserable. 

3. I would have to be down at the med center every 2 weeks to remeasure

4. The cost when it's debatable on whether it helps. 

We also had confirmation in multiple conversations including our Dr. And the Down syndrome clinic doc. She said she's concerned with "our kids" because the helmet causes there head to drag forward. So that's the scoop. But the last 3 weeks our little guy has been sleeping on his tummy and he seems to sleep so much better. 

Wow! So Connor just turned 10 months yesterday. I started this post a month ago. Here is what we've been up to lately!

Rockin the new high chair

Occupational therapy. We love Ms. Julie. She comes in every 2 weeks and does some great things. Like making him work. 

Connors new bestie, Jase, was born and we got to visit in the hospital. 

Play date with friends! 

Just being me, cute!!!

Chicky with the family!!! Even though he didn't get to eat any. He still had fun

Our friend, Cody took this. She's posted three of them and there are more. We are patiently waiting to see them all. She's super amazing! 

Playing in big brothers room

Rise tuition letter

Jason and I just got home from date night! On the way in we grabbed the mail and there it was, the letter. The official letter from Rise that would tell us how much our monthly tuition is. I was so nervous opening that piece of paper.  Good thing our friends Jon and Carly prepped me on what they pay. It made the sticker shock a little less shocking. But God is good, as always. He has  provided me with a part-part time job that allows me to work around the kids. It's a friend of mine. She's an amazing real estate agent and I'm doing some work for her. So the plan will be to bump up my hours to part time in the fall. And the money I make there will pay for most of Connors school. So if you are looking to buy or sell your home I get a referral fee (since I'm licensed). And Joanie's pretty awesome. In 2013, she sold a house every 4 days. She's definitely a go getter. 

Regarding Hunter at Rise, they currently don't have a spot for him. Which is okay because his portion alone would be $886. Yikes. So he will be attending Sugar Creek Baptist on Tuesday and Thursday in the fall. 

Thanks for your continued support and prayers. 

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.