Friday, September 21, 2012

Its been 1 year...

Tomorrow will be Mason's 1 year " New Hear" anniversary.
1 yr since we had to place our tiny baby into the arms of the Dr.s who were going to save his life.

1 yr since we clung to every update the nurse gave us ( praying that every update meant he was doing ok)

1 yr since we waited 8+ hours to see him after surgery.

1 yr since my sweet baby's heart was fixed.
Echo before surgery

 Pre - Battle Scar pics

To think back on that day ( or see the photos) is still very "raw".   Yes, we are a year post-opt.  Yes, he is doing well now...... but that day,  I handed over my baby, not knowing if he would come back to us.   To have to put all your trust into a Dr. who you have only met for 20 min,  its hard.   Everything was so un certain.  There were no guarantees that everything would be ok.  All we could do was hand him over, and pray. 

And boy did we pray! 

All prepped - waiting to hand him over

Our whole family and friends were there to help us through that day.  We very much needed them there.  Words can never express how important they were to us that day.   Always keeping our spirits up,  helping distract us when possible.   We all were praying for the same thing that day,  praying for our Mason. 

After we got the WONDERFUL news that Mason had made it through surgery, we finally got to go back and see him for the first time....

 I had this lump in my through before walking back to see him.....   I was so happy to see him, but I was trying to brace myself for what I was about to see......

(Warning!  Graphic pics below)

 First time we got to see him

 Med towers

 morning after

 opened his eyes for the first time( late 2nd day)

 All together we were in the hospital for 18 days.

Cory was able to stay with me the first 8 days, but the last 10 I had to do by myself.  It was the hardest thing I have done.   To be away from my husband, my son. while sitting beside Mason, fighting to recover. 

Finally getting to hold him!

We went into Mason's surgery thinking we would be heading home in 5 days... We were there 18.  Mason had just about every complication in the book......but you would never know it today.   

He is strong, and is such a fighter! 

So Mommy & Daddy say:

Happy New Heart Day 

Love you so much!

Sunday, September 16, 2012

Long day

This past Wednesday was a very busy and very LONG day for Cory, Mason , and I. The 3 of us spent almost ALL day at Childrens Mercy Hospital. Mason had a full day of specialist appointments.

We arrived promptly at 745 am to check in at the down syndrome clinic inside CMH. This is always an appointment I enjoy actually. I know that might sound odd to some....

First off :
The down syndrome clinic is staffed with an amazing bunch of specialist, nurses, and techs who all specialize in children with DS.

2nd :
All of the patients that are seen at DS clinic have that extra special chromosome. That means that we sit in a waiting room with children who are all just like Macy. No comparing mason to " typical" children while waiting to be seen.

There is something special about that waiting room , and the parents that are waiting .... There are knowing smiles and head nods ... Because we are all on a journey we never expected but the journey isn't as hard as we thought We are all there, being proactive for our children. I sit in a room with most children sporting their " battle wounds" ( open heart surgery scars), wear glasses, or wearing shoe inserts. Things that are normal now ..... Are things that get stares in " typical waiting rooms". And we don't get odd stares , because everyone in that room has something similar. It's a good feeling of being around " our own".

It's just a good overall feeling , one that very few will ever understand.... And I'm ok with that.

So , this is how our DS clinic appt goes :
Sit in a room while 7-9 specialist rotate through your room in a 5 hour span. .....
Add in a 16 mo old who wants to cruise around or crawl ( anything but sit on your lap) to the equation .. Makes for a long time trapped in a room! But keeping with his amazingness , Mason did great.

We saw a audiologist , speech therapist , occupational therapist , dietician, physiologist , pediatrician , and social worker. Mason got a great check up from everyone and was even a over achiever in almost all categories !

After his clean bill of health we rushed over to the endocrinology clinic to see the dr about Masons thyroid. Mason was being seen because his thyroid levels are higher than they should be :(. So after some talking and looking over his blood work results , we decided to do another round of labs then go from there before we start meds.

After we finished at the endocrin office , we high tailed it to children's mercy south for his ophthalmologist appt and lab work.

We saw his new ophthalmologist ( very very nice) we found out mason will need surgery for an eye correction on the 27th of sept. **mason tilts his head back to focus his eyes... To repair this he will have surgery to detach his eye from the muscles , then adjust, then re attach to the eye**. Surgery will last about 1-1.5 hours and mason will most likely stay overnight.

After setting up his surgery date we headed down to labs to get his blood draw .... Long story short... 1.5 hrs later and a momma **this** close to punching a nurse... We left with no labs done.

So after spending 8am-430pm ... We finally got to head home ... In rush hour traffic.

We were so tired from such a long day , that ALL of us slept in the next morning!

Tuesday, September 11, 2012

Tomorrow will be busy .... And not in a good way

Tomorrow we will head to Kansas City, for a full day of dr appointments.

We will be leaving at around 6 am to make our way toward children's mercy hospital. Our first stop ( besides breakfast ) will be the down syndrome clinic. The down syndrome clinic is a several hour appointment to say the least. We basically sit in one room for several hours while different specialist rotate through your room ..... I'm talking like 8-10 specialist!! It gets overwhelming at times. The last time we were there was in oct of last year. ( shortly after masons open heart surgery. It was easy then because mason pretty much just slept and ate at that age ..... Well now mason is a mover and shaker! He is into everything! He wants down to run around and walk.... So 4 hrs of trying to contain a toddler ..... Please pray for us ;)

After the down syndrome clinic we will go to the endocrinologist , to see what we can do for Masons thyroid issues. ( his thyroid is elevated :(

We drive 30 min south to another appointment. This one is the optamologist to see about mason having eye surgery to correct 3 different issues going on... More on that later ....

Then finally we will load up and head back home . Mommy is just hoping for good news all around ... But I have a feeling were looking at at least 3 surgeries ......
Any prayer would be greatly appreciated.

This child is doing great with self feeding ..... If you can't tell!!!

Painting fun!!

Just a few pics of Mason having fun painting !!