Sunday, December 25, 2011

Sunday, December 18, 2011

It makes me cry



This last year has been a wild ride. There have been the lowest of lows and highest of highs. I honestly didnt think Mason would be here, celebrating Christmas with us. The thought makes me cry, but I cry happy tears. Tears of JOY! We are so very very blessed that our sweet Mason is here on earth with us.

After we found out the Mason had the Cystic hygroma, heart defect, and Down syndrome, I was so worried for this tiny unborn child. I saw all that he was up against. I prayed that God would take care of him. In praying those prayers, I was also afraid that God would need to take him to heaven, till we could meet him later. All my heart wanted was for Mason to be with us, but I knew that was selfish. I had to keep telling myself that God is in control. That if Mason wasnt here to stay, that I would see him again. I would have dreams at night of Mason meeting me at heavens gates, being rocked to sleep by angels, and playing in heavens playground. These dream brought me peace, but also heartache. So when our sweet boy made his arrival into this world, I thanked God for granting me this time with him.... no matter how short the time would be.

So at every event and every holiday, I cry. I cry because these are moments that I thought I would never get to have with Mason. I look at my boy, growing and triving, and it all because our God is a good God.

So this Christmas morning, I will have tear filled eyes as I tell my sweet boy , "Merry Christmas"

Wednesday, December 7, 2011

Fears are gone....

This is something I wrote back in February , when we thought Mason could pass away at any time.. I can now answer these questions I had...

After we got the diagnosis of down syndrome, we were crushed. Everyone kept telling us everything will be ok. That Mason will just be "extra special". But there are several worries that have been running through my head....

Will others accept Mason?

Yes, they will greet him with open arms

Will others not think he is worth as much as normal children?

Yes, Actually I think he is worth more..

Will others only see his down syndrome , not his personality?

I think most just see Mason as Mason. There are still people that think a lot about the DS and their questions are most always directed towards his DS...but I pray they will come around and just see him for the incredible miracle he is. I just wish people would realize that he can be treated just like a regular baby...dont ask me a million questions about him and ask if its DS related or medical conditions... just ask me normal baby questions

Will others think he is not as beautiful as normal babies?

Mason was born even more beautiful than I could ever imagine...He is a beautiful baby, super sweet, and always smiling!

Will they celebrate his birth?”

At Mason's birth there was tears of joy streaming down everyone's faces, The nurse said she had never seen such a "fan club" waiting outside the OR to see a little baby! We had so many friends and family. To have everyone there supporting us and celebrating him was wonderful.

Will people feel uncomfortable around him?

I think the only thing that made people "uncomfortable " around him was right after this surgery and holding him. They didn't wanna hurt him..or hold him wrong But other than that everyone seem pretty casual with him.

Will people only feel sorry for us, and not share in our joy?

Im sure there are people out there who feel sorry for us. We don't feel sorry for ourselves. We feel blessed beyond words. The people who might feel sorry for us, must not know us very well. Others will try to cut down our joy with trying to "over shadow" us with their own " accomplishments" but they only do it because they are insecure with the attention Mason receives.

Will others avoid us?

I haven't really had anyone try to avoid us, But I avoid situations that are not healthy for Mason & I.


I worry about how the world will accept Mason. But even more I worry about keeping him safe and praying he is born as healthy as possible.

Our life is so full of un answered questions... but God will answer them one by one.


God answered all of our prayers, and though it wasn't always in the exact way we thought. Mason is here and doing great. We owe all of this to our Most High God. He did miracles in a baby that the "world" didn't want. But God wanted him, just as much as we did.

I know our journey wont be an easy one, that our road will be difficult at times, but I know in the end we will all be better because of it.

Mason Dean, you are my light to the path that God has chosen for me. I love you with all my heart sweet baby boy.

Tuesday, December 6, 2011

In the clear...




Last week at Mason's cardiology appointment (3 appts that day!) We got some great news.....Mason wont need to be seen by the Cardiologist until FEBRUARY!!!!! Can u believe that??? We went from 3x a week echos to 8wks ~!

AMAZING!!

Mason is also doing great on the weight gain department. He is now a little over 15lbs and growing! We had is regular pediatrician checkup before Dr. Nelson goes on maternity leave. Mason is growing right on the DS "curve" he is steady in the 40-50% on everything. Also his Dr. said his development is only lacking on sitting (but some "regular, term, non OHS babies are not always sitting at this age either). So overall a great appointment day!

Mason has also started on a new vitamin for children with Down syndrome. Its called Nutrivene D and I will be blogging on his progress with this. So far he is "babbling" more and is gaining weight ( he wasn't really gaining before we started NVD). So keep a lookout for our progress with that and this PT/OT therapies as well~!

Tuesday, November 29, 2011

Busy Week again


This week is going to be a bit busier than our normal "busy week". Mason had RSV shot, and Physical therapy today. Tomorrow will be Pediatrician checkup, then Cardiology check up. We already went to the Dr.s office yesterday for Colby (sinus infection). So total, we will have 5 dr visits this week.

Also we met with our new physical therapist today...all I can say is I loved her after the first 5min!!!!!!!! She was wonderful and VERY encouraging.

Happy Tuesday!

PS
Mason is showing off his synchronized swimming skills

Sunday, November 27, 2011

Sleepy


This is what happened to me the other morning, Cory left for work, Mason woke up to nurse, Colby can crawling in our bed to snuggle mommy. Well then I got up...and they slept this way for 2.5 more hours!

PS
we do sleep with sheets on the bed...but I forgot they were still in the wash at 10pm...ooops

Saturday, November 26, 2011

We had a Happy Turkey Day...






First of all.... Happy Thanksgiving from our family to yours!

Here is our rundown of Thanksgiving:

First we started at Cory's parents house. We had a yummy meal ( I brought homemade rolls and pumpkin cheesecake.) Mason was great all day , no fussing , just 110% good. (like he always is). He fell asleep after a few bites of lunch. Colby did really good up until his nap was interrupted... then he was mr. grumperpants for an hour or so.

We also went to my parents house to have dinner. Mason slept through that meal as well. Colby had a great time playing with his cousins at my parents house, and I got to cuddle and love on my niece Maddy. We all gave thanks and ate too much....just like we should.

Hope you had a great holiday as well!


PS.
Mason didnt sleep through Thanksgiving...though it kinda looks that way in the pics!

Friday, November 18, 2011

I need to blog more....

So..... Im a really bad blogger.
But Im going to try my hardest to keep up with blogging better. pinky swear.

As I mentioned last time, Im going to be adding in more of a "family" aspect to this blog. Yes this will still contain everything involving Mason, down syndrome, and heart defects. But our life is more than Down syndrome & heart defects, yes they are a major part of our life....but it doesn't rule our life. And this is a VERY good thing! When we found out that Mason had down syndrome, it was all we coukd think about. And then add that he only had one chamber in his heart, um ya, it filled every thought. But were in a good place now, and DS and his heart take a back seat to therapy, potty training, and family time. And I couldnt be more thankful.

Also, I have another prayer request. I was emailed the other day, a couple just had a baby boy and he has down syndrome (they didnt know before he was born) This came as such a shock for them and they are thinking that they do not want him now. He is in the nicu for being a bit early and the oarents refuse to even hold him. They are planning ow on giving him up for adoption. We ask for you to pray for these parents that they open their hearts to their little baby and know that he is a true blessing. And if not that they tiny baby finds a forever home with parents who love him.

Thursday, November 10, 2011

Doing Well





Sorry again for the delay in updates! I will get back into the swing of things again ...I promise!

First up: LIFE IS GOOD!!

Mason is doing very well now. He is now weaned off his steriod and Ib profin (both were being taken for the fluid around his heart). He is now only on Lasik (diaretic), Zantac (for meds bothering his tummy), and Captipril (blood pressure med). Were down to half the meds he was on!!! He had an echo Monday and the fluid is still gone and are considering it resolved as of now!!!! PRAISE GOD!! Overall we can see a change in him, he is just so happy! When the fluid was at its worse...he wasnt nearly as happy as he is now...he is back to his old self!.

We praise God for all the blessing he has bestowed on us & Mason.

I want to start incorperating more "family life" into this blog. Mason is part of our little family of 4 and I will be sharing more "family stuff" on here....hope that is ok!

So here is a proper interduction of our little family

This is Cory (loving, hard working, sweet hubby of mine)and Colby (our 2.5yr old FANTASTIC son, and loving brother)


Be prepared to start hearing more about these 2 wonderful guys in my life!

Sunday, November 6, 2011

So Happy




This is the baby I get to wake up to every morning! He is just the sweetest thing EVER

Tuesday, November 1, 2011

Mason had an echo yesterday, for pre op to get the fluid around his heart drained. For the last 6 wks we have tried 4 meds and doing 2 echo a week without any change. The fluid was starting to become life threatening because it was thickening around his heart. They started the echo and the tech keep scanning & scanning and finally called the Dr in to scan also. I was starting to really worry t...hat we were going to have to do an emergency procedure because the fluid was worse....but God had other plans... Mason's fluid is gone. They couldn't find any fluid around his heart. Both the Tech and the Dr were baffled but I wasn't. I knew God had preformed a miracle once again. So again we praise GOD for all the blessings he has bestowed on us again

Saturday, October 29, 2011

Time to walk!

We are getting ready to go to our very first "Step up for Down syndrome" walk today!!!! So very excited and all of our family and friends are coming to join us! **Be ready for photo overload when we get back**

On a different note...I have an update on baby Justice:

Tonight there are no prayer request for Justice. There are no beeps to listen too. There are no gases to check. There are no monitors to watch. Tonight Justice is dancing around the throne of God with a complete and new heart. Justice will not have to have any more surgeries. Justice will not have to take medicine to help his heart function. Tonight Justice is in the presence of the Almighty One. Justice's time on earth was short. It was 28 days of surgeries, cath labs, pokes, and prods. He amazed the most talented and gifted doctors and nurses. He also made them scratch their heads. We enjoy our 28 days with him sitting by his bed, rubbing his little hands, kissing his little feet, and making funny faces at him. He was a pure joy to have in our life. He served his purpose. God ordained and orchestrated for his earthly life to begin on September 30, 2011 and end on October 28, 2011. He accomplished more for the kingdom of God that many will accomplish in 28 years, let alone, 28 days. Sara, Noah, and I will have the awesome privilege of sharing his story during our time here on earth.
Justice passed away a little before 330. He was 28 days old. Thank all of you for praying. Love all of you. To God be the glory

Please continue to pray for the Perry family through this difficult time.

Friday, October 28, 2011

Praying....



Mason had another echo on Wed and showed the fluid is still the same. We have another appt on Monday (not Friday like we were told). We will consult with the surgeon the first part of next week. Im very glad for this because we get to attend STEP UP FOR DOWN SYNDROME walk now!!!!! We raises over $1200 for Down syndrome and we are so so so excited to join in on the largest celebration for people with Down syndrome!!!! Thank you to all who donated!! They are still excepting donations till tomorrow~ ;)

On a different note...Remember how I had mentioned prayers for 2 heart babies...well here are their updates:

Justice:

We just met with the doctors after Justice's surgery and medically speaking there is no more they can do. His brain shows signs of bleeding and his kidneys have gotten worse over the past few days. These 2 issues and more disqualify us from being able to be placed on the ...transplant list. Justice's heart has gone into cardiac shock and is not functioning on its on. He is still hooked up to a pacemaker and the ecmo machine is still providing for him. We now have 2 medical decisions. We can either turn the ecmo machine off all at once, or we can slowly wean down and then stop it. We are not and do not have to make that decision tonight.

We are continuing to pray for Justice and his family. They said this morning
Due to the bleeding in Justice's brain, they believe he is having seizures. He is comfortable and very alert. We sleep more over night than he did. We will begin weaning down ECMO at noon and will wean down as the circuit allows. When we are the lowest we can go we will then clamp off and it will be up to Jesus & Justice to do the rest
We will continue to pray for Justice and his family.

Emmrie is doing better and hopefully be going home around Thanksgiving... She still has a long road to recovery though.

Thank you agian for all your prayers for ALL the babies

God Bless

Friday, October 21, 2011

Cardio appt update

Mason had another echo yesterday.

Dr. G said that the fluid is still roughly the same. He didnt think it had increased or decreased. Then he sighed and said we have a new problem. The fluid around the heart is starting to thicken. We were told if this continues it is life threatening. So Mason will have another echo on Monday & a consult with the surgeons at Childrens Mercy to see where to go from there. If it is still thickeing then Mason will need surgery right away. We are praying the steriods start helping and the fluid stops thickening.

We ask for your prayers this weekend. We know what the power of prayer can do!

Also I would like to put 2 little babies on the prayer request also.

First is for Baby Justice - He is a few months old, had several heart surgeries, is doing a final surgery today...if it doesn't work they will be having to face taking him off heart support. He is in surgery right now. ++++++UPDATE FOR JUSTICE++++
Sorry about the choppy updates this morning. Last night around 7 p.m. we started noticing more drainage out of the drainage tubes than there had been. This alarmed our awesome nurses and ecmo specialist so they called our surgeon and began doing med therapy. They decided they would have to go in an examine everything to see where the blood was coming from. When she went in the bleeding had stopped, probably due to the therapy, but she noticed the shunt was clotted again. With his state of being opened for 20 days now, and with having other major procedures done to his heart, and him being on ECMO 2x, they have very limited options of what they can do. All of the doctors came together and agreed if his films & eco's showed he had enough of his right heart, they would attempt 1 more procedure. It was either attempt this or turn the machine off. We are still fighting and believing so we opted to do this one last surgery. There is a very high chance that he could pass away during surgery, more higher than in the past due to all the already listed circumstances.

All that being said, we know who the great Physician is. We know that He is in control. We believe that He can and will Justice. Sara, Noah, and I do covet your prayers. Sara and I have not had much rest this week, but know where our sustaining comes from. Keep praying and keep spreading the word. We are suited up, and we are charging full speed ahead. SUIT UP!!!

Also pray for Baby Emmrie- She is 1 day older than Mason, she had the same surgery as Mason, At CMH also! She is having the same complications as Mason did but is still in the PICU.

I ask for added prayers for these babies. Mason has so many prayers going out for him that I want to "share the prayers" with these other babies that need just as many prayers as Mason.

God Bless

Wednesday, October 19, 2011

Cardio appt tomorrow morning

Mason will have another echo tomorrow morning at 8am. They are looking to see if the fluid has increased again. We are praying that the fluid is the same (or less!!). They put him on a steriod to help with the fluid and we will see if that is helping.

Thank you again for your continued prayers.

God Bless

Sunday, October 16, 2011

Journey of a new ticker...part 2


Sorry for the delay again!

Ok ...where was I...

Oh yes! Recovery.

The "original plan was for Mason for surgery to take 2-4 hrs, 2days in PICU, and home in 5 days. Well that didnt happen what so ever!

First off Mason's surgery lasted 7 hrs. Since he had to be put on bypass twice & on bypass for twice as long, recovery was long and hard. He was to get his breathing tube out the next day after surgery....well that didnt happen either. Mason had a difficult time with his recovery . He was on the ventilator for 5 days. Things kinda snowballed from there.

Since he was on bypass so long he was on the vent for 5 days> since he was on the vent so long he got pneumonia> because he had pneumonia he couldnt leave the PICU.

He was in the hospital a total of 16day. Mason also had Chylothorax (A chylothorax (or chyle leak) is a type of pleural effusion. It results from lymphatic fluid (chyle) accumulating in the pleural cavity.) We noticed when he finally got to eat that his drain tube from his chest had a milky color to it. Well it only got worse the next few days. Appearently the surgen cut into Mason's lymphatic duct or system and he was leaking lympatic fluid into his body. They said if it didnt get better then he would have to stop breastfeeding and be put on a special formula. **Momma was not happy. Finally about 6 days later it was getting better and finally stopped all together. *PS* they couldnt take his drain tube out untill the Chyle was gone. We were so thankful that it was healing a they could finally take his drain tube out!

During the same day they took his drain tube out they asked me if Mason still sounded hourse... I told them yes. I thought it was from the vent tube (they said he would be hourse for a while). Well they said they wanted the ENT to come and look at him just in case. So shortly there after the r ENT Dr came in and used a long camera and looked at Mason's vocal cords. His findings were upsetting. Mason's left vocal cord is paralyzed right now. They think the nerve is "pinched, bruised, or cut". We will know more in about 6mo. So right now Mason has a very quite cry and raspy voice. They said it should get better with time....... Im praying its only bruised.

The rest of our stay was just "keeping an eye on him" type of stuff and pretty uneventful. All I can say is that I am so very glad we are home!

Tuesday, October 11, 2011

So Thankful


Sorry for the long delay in updates!

We are home & doing well!

It has taken a bit for us to get re-situated at home. Mason kinda had his days & nights mixed up the first night. But being the wonderful baby he is ...He is back to sleeping through the night. Colby is glad to be home as well! What a feeling it is to have all your family back under the same roof. AMAZING

Well since I didn't do the best job of updating everyone during Masons recovery...I will do a quick rundown of the 17 days we were at the hospital. YES 17 days. Honestly we went in thinking 5days..7days tops! Boy were we wrong.

First was our "pre-op" day. *LONG DAY* We did an echo, EKG, blood draw (that ended in Mom & dad crying, Nurses grumpy, and Mason purple & needing oxygen) Then filled out a TON of paperwork. The nurse then tells us there is a 50/50 chance we wont have the surgery on Thursday..... The PICU was full and didn't have the room for us. ***INSERT PANIC HERE*** I almost started crying. We prayed & Prayed the rest of the day. We waited for the phone call that evening to tell us yes or no....well they never called. So I called them! 25min, 12 transfers , and 3 call backs we had our answer...YES for surgery.
***Side note** ( Our friends Adam & Suzy's little girl, Kandise, was having surgery on Thursday as well. We went through all out pre-op appointments together (that was so so nice to have friends there with you doing the same thing) We were both told a 50/50 chance of surgery. Then Adam and Suzy said " If it comes down to Kandise & Mason...Mason will get the surgery." (to have them say that was un selfish of them.) both were to have surgery at 8am... But they got a call at 5am that their surgery would be Friday morning instead.) Kandise is now doing well and is home with her parents!*****

Thursday morning was difficult to say the least. Knowing that I was going to have to hand over Mason was killing me inside. The fear & worry of the unknown was hard to deal with. Finally it was time to hand him over. We walked to a side door to a little hallway. Lining that hallway was all our family & friends. All standing there to support us. My Mom & Dad, Cory's Mom & Dad, My sisters Jen & Amanda, My BFF Bec, My SIL Liv and our pastor Mark were all standing there with tear filled eyes as they each kissed the top of Mason's head. Then came the hardest moment ever...handing Mason over to the Doctors. Words cant describe it, and very few parents will ever know what it feels like. Hardest thing I have ever done.

Mason's surgery was to take 3-4 hours. Our first update from the OR nurse was 1.5 hours after we handed him over. They hadn't started yet, they were having a very difficult time getting Mason's lines in ( He had 42 needle marks on him after surgery.) Next update was 1 hr later saying they had started and he was doing good. Next was his upper hole was fixed. Then the valves were being worked on, then the lower hole was being fixed...then they ran into trouble. They had fixed the bottom hole, stitched up, took him off bypass, and did an echo....There was another hole. So they had to open him back up , put him back on bypass, and repair again. Finally they came to tell us he was on his way to recovery and we would see him soon. 7 hours after we handed him over.

When we finally go to see him *7pm* he looked awful. He was cool to the touch, on a ventilator, and puffy. But I was so glad to see him. Our nurse that night was amazing (THANKS ANNIE) and took great care of Mason those first few night in the PICU.

**Mason decided he is hungry...I will finish the rest of our Journey update tomorrow!

Friday, October 7, 2011

YAY


WE
ARE
HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

update tomorrow....but all is good & feels great to be home.

Saturday, October 1, 2011

doing good



Mason is doing well! Recovery has been slow but is steady now. Mason is down to just the chest tube and oxygen( tiny bit). He looks so much better than before. He is also acting like himself more & more. We are hoping to remove the chest tube tomorrow hopefully! He is just doing great!!! Thank you for your prayers for Mason and our family.

Thursday, September 29, 2011

long road ahead

quick update.....still in hospital but doing better and we are now out of PICU!!!!! Mason pnuemonia looks better on the xrays also. We are waiting for chest drain tube to come out and to wean off oxygen. Were on our way to be going home "someday".!

Monday, September 26, 2011

day 4

So yesterday was pretty much a wash. Mason still has his vent in. His chest xrays seem to be very cloudy....cloudy is not good. Mason seems to have pneumonia.

Since Masons surgery lasted 2x as long because they had to go back in , it caused a few problems. Its taking longer for everything to start moving along. They said since he was on bypass so long, it made him stay on the vent longer, being on the vent longer gave him pneumonia. But they put him on a very strong antibiotic in hopes to help his lungs.

Mason is a bit more awake and will open his eyes...but since he fights the tubing of the vent when he is awake..they keep him pretty sedated. We are praying that today we can finally start moving forward.

We have had wonderful nurses and Drs here at Childrens Mercy . Our nurses have been amazing!! Thank u Annie & Sarah !! We have been lucky enough to have the same nurses so far.

Thank you again for the prayers, well wishes and gifts for Mason!!! His room is getting pretty cheery with the balloons , flowers, and gifts!

Saturday, September 24, 2011

Day 3

Mason is doing well. We had a pretty slow day. We thought that he would have the vent taken out by this morning but a few "problems "arose. He really started holding fluid and their main concern was his swelling and puffiness. They put him on some meds to help him pee off the fluids and it starting to work. They also want him to wake up more before he comes off the vent. So he was taken off the sedation meds also. It has yaken him a long time to finally start to wake ....but he inst fully awake yet. They said they want to take out thr tube in about an hour or so..... hopefully we will know more soon.

Thanks again for all your prayers!!

Friday, September 23, 2011

day 2

Mason Dean Busey, you are a fighter!

Mason had a slight rollercoaster ride last night. He developed a fever of 103.8 after surgery. He also was having a bit of trouble with his blood pressure and his heart rate They want his heart rate at 120 to 140 ....Mason was at 203. But Mason was in great hands His overnight nurse(Annie) watched him closely and kept on top of everything. By 7am he was at a normal temp, good blood pressure, and heart rate of 150/160. Drs said he is doing great and we will be working to get him off the vent tonight/early morning.

Thank you again for all the prayer (from literally all over the world) God is showing us again what Miraculous things he has in store for Mason. God is so good.

Also please send prayers for our friends little girl Kandice, she is 4 and is actually just down the hall from us. She was to have her heart surgery yesterday the same time as Mason.....but they got postponed and Mason got to go ahead. It brought tears to my eyes when they said " If there is only room for one baby to get their heart surgery, we want Mason to go ahead". To have them say that was so selfless. Thank you Adam and Suzy.

God Bless

There are some photos of Mason on our FB page . For some reason the computer wont let me add phots to blogger right now..so just click on the "prayers for Mason" facebook link at the top of the page.

Thursday, September 22, 2011

out of surgery!!

He is out of surgery! All is well and waiting to see him. Had to go back in and fix a smal hole they found after they took him off bypass. Went back and fixed again! Dr Gandy said that she was very pleased with the results . There is a mild leak in the right valve and a small hole going from the Right ventricle to the left atrium. They said they wil need to watch it and hoping it doesnt give us any trouble. Were waiting for him to get settled into the PICU and then we get to see him. Surgery lasted 7 Hours instead of the quoted 4 hours. We are praising GOD for carrying Mason through this and so so so glad to be on the other side. Thank you all for the thougts and prayers we have received. TO GOD BE THE GLORY!

and yes ...I gave the Dr. a huge hug and told her thank you for fixing his little heart

Monday, September 19, 2011

Preparing..




Sweet baby, Hold on, your tiny heart will be fixed soon.



We are leaving tomorrow evening for Children's Mercy. We have pre op Wed morning at 8am. Praying for strength for Mason, I, and Cory.

We will be keeping everyone updated on the blog & on Facebook

Wednesday, September 14, 2011

Come & Get em!

We now have "Mission: Mason" shirts!
We will be ordering them ASAP!
Each shirt is $10

Help support Mason & Step up for Down syndrome

email @ camaro350cu@yahoo.com

Shirt sizes are youth xs thru 4xl

Tuesday, September 13, 2011

This is really happening

First some new pics of Mason..

Loving the Jumperoo


Fresh and Clean after his bath




Going for a walk with Mommy








:: Insert Panic Here::

Its really happening.

Mason is finally going to have his tiny "ticker" fixed.

I knew that Mason had to have his heart surgery, but it doesn't make it any easier. It didn't really hit me till yesterday. We are now in "full swing" on getting ready for surgery.

Lots of phone call to Dr. offices, Surgeon's offices, Hospital, Insurance, ect...

There is a 102974570802 things to be done...but all I really wanna do is hold Mason tight, smell his sweetness, and savor every moment.

Also....Mommy & Colby are getting cabin fever with 3 week "lock down" Were used to going to the zoo, pool, grandmas house for lunch, library, shopping, ect... usually something fun each day. But now...we go NO WHERE! 1 more week.

Prayer Requests:
Mason continues to gain weight till surgery (to avoid feeding tube)
Mason (and whole family) stays healthy
Mommy doesn't go crazy (jk...kinda)

Monday, September 12, 2011

Mason's Cause!


A sweet friend of mine from childhood is helping raise some money for "STEP UP FOR DOWN SYNDROME" walk on Oct 29th. A percentage of the proceeds from this SCENTSY PARTY will go directly to our team (MISSION: MASON) !!!

This is an online party, so anyone can order from this party!

How to order (Start ordering now thru September 30):
• You will first need to go to https://aepauley.scentsy.us/

• Click on the party that says Mason’s Cause

• You will order directly from the website

• Please make sure you have your order delivered directly to you (shipping charges apply)


If there are any questions please contact:
Ashly Pauley
Independent Scentsy Consultant
Phone: 817-223-0312
Email: ashly.pauley@yahoo.com
Web Page: https://aepauley.scentsy.us/



THANKS FOR HELPING MASON!!!!!!!!!!!!!!!!!!

Sunday, September 11, 2011


by Edna Massimilla

A meeting was held quite far from earth.

It’s time again for another birth,

Said the angels to the Lord above,

This special child will need much love.

His progress may seem very slow.

Accomplishments he may not show.

And he’ll require extra care,

From the folks he meets way down there.

He may not run or laugh or play,

His thoughts may seem quite far away.

In many ways he won’t adapt

and he’ll be known as handicapped.

So let’s be careful where he’s sent.

We want his life to be content.

Please Lord, find me parents who

will do a special job for you.

They will not realize right away

The leading role they’re asked to play.

But with this child sent from above

Come stronger faith and richer love.

And soon they’ll know the privilege given,

In caring for this gift from Heaven.

Their precious charge, so meek and mild,

Is Heaven’s Very

Special Child.

Thursday, September 8, 2011

Some thing to smile about


MR. Happy Pants

Playing with big brother Colby





Just as happy as a clam

Enjoying our evening walks

Life is GOOD

Monday, September 5, 2011

Wednesday, August 31, 2011

We have a date...




We got "the call" today from Childrens Mercy Hospital. Mason is set to have his Open Heart Surgery on September 22nd. We will have to be there & checked in on Wed Sept 21st to do pre op.

I thought I was prepared & would be relieved that we got a date... but I feel worse knowing that my tiny miracle will be undergoing Open Heart Surgery in 3 wks.
I cried when I hung up the phone...the emotions hit me like a ton of bricks.

Right now we need some prayers for Mason:
That he stays well and healthy till surgery.
That he continues to gain weight
That he doesnt need to be hospitalized before surgery for meds (since he is maxed out)



Monday, August 29, 2011

Mason' Cause!!


A sweet friend of mine from childhood is helping raise some money for "STEP UP FOR DOWN SYNDROME" walk on Oct 29th. A percentage of the proceeds from this SCENTSY PARTY will go directly to our team (MISSION: MASON) !!!

This is an online party, so anyone can order from this party!

How to order (Start ordering now thru September 30):
• You will first need to go to https://aepauley.scentsy.us/

• Click on the party that says Mason’s Cause

• You will order directly from the website

• Please make sure you have your order delivered directly to you (shipping charges apply)


If there are any questions please contact:
Ashly Pauley
Independent Scentsy Consultant
Phone: 817-223-0312
Email: ashly.pauley@yahoo.com
Web Page: https://aepauley.scentsy.us/



THANKS FOR HELPING MASON!!!!!!!!!!!!!!!!!!

Thursday, August 25, 2011

New Mason Pics















We got the boy's pictures done before we have to go into "isolation mode" for surgery. Got some good ones of him without a shirt...before he gets his battle scar.