Monday, March 28, 2011
And again ...THANK YOU for all your support and prayers!! They are truly working!
Posted by Mrs. B at 7:52 AM
Sunday, March 27, 2011
All people would be encouraged to develop and use their gifts for helping others.
In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.
People would be refreshingly honest and genuine.
People with Down syndrome are nothing if not straightforward and unpretentious. As the expression goes, “what you see is what you get.” When you say to people with Down syndrome, “You did a good job,” most will answer simply and matter-of-factly, “Yes, I did.”
We believe, too, that a stuffy high society would probably not do well in the world of Down syndrome.
However, we believe that BIG dress up dances would flourish. People with Down syndrome love dressing up and dancing at big shindigs. They have a ball, and ...can they dance! (and by the way, who needs a date... “Just dance”).
Most people we have met with Down syndrome also love weddings. This should not be a big surprise. They love getting dressed up, being with family and friends, having good food, and, of course, dancing until the wee hours of the morning.
Order and Structure would rule
- Schedules and calendars would be followed.
- Trains and planes would run on time.
- Lunch would be at 12:00. Dinner at 6:00.
- Work time would be work time.
- Vacation would be vacation.
But there is much, much more:
- People would be expected to keep their promises.
- Last minute changes would be strongly discouraged (if not considered rude and offensive).
- Places would be neat, clean, and organized (not just bedrooms, but cities, countries, the whole world).
- Lost and founds would go out of business
- The “grunge look” would be out, way out.
- “Prep” (but not pretentious) would be very big.
- Our current mode of dealing with time, also known as the “Rat race” (or rushing around like our hair is on fire), would not survive.
- Here and now would command a great deal more respect than it currently does.
- Stopping to smell the roses would not be just a cliché.
- Work would be revered, no matter what kind, from doing dishes to rocket science.
- Speed would be far less important than doing the job right.
- Work would be everyone’s right, not a privilege.
What About Self Expression?
- Art and music appreciation would be BIG.
- People would have time to work on paintings and other art projects.
- Acting and theatrical arts would be encouraged for all.
- You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight ... absolutely.”
- The President’s commission on physical fitness would probably recommend dancing at least 3 times per week.
- People would be encouraged to get married several times to have more weddings for more music and dancing.
- Richard Simmons and John Travolta would be national heroes.
- Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG)
- Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”)
- John Travolta would be the biggest star.
- Classic TV hits would be very BIG and take up at least half the TV schedules.
- “I Love Lucy,” “Happy Days,” “The Three Stooges,” etc. would be very BIG.
- Wrestling would be very Big.
- “Life Goes On” would also be very Big and replayed regularly.
- There would be fewer movies, but they would be replayed over and over.
- Movie theaters would allow people to talk out loud to tell what happens next.
- People would not hurt the feelings of others and they would also not lie or keep secrets.
- Therefore there probably would be no secret service agents, spies, or terrorists.
[Taken from the National Association of Down Syndrome]
Posted by Mrs. B at 7:00 PM
Wednesday, March 23, 2011
Today was a check up with Dr. Evans. It was a pretty quick appointment to just see how our little guy was holding on.
Mason is honestly a true fighter/miracle. (Thats about all I can say without crying)
Here is the "run down" of the appointment:
Mason is growing right on target.
His cord pressure WAS 4.2......It is now 2.6 !!!!!!!!!!! (How amazing is that!!!)
My fluid isnt rising as quickly and that means Mason's body is doing what it should!!
We go back next week for a full growth scan.
Mason is beating all the odds. He truly is my miracle baby. I know that all these prayers are working...because just look at the changes that have happened ! Praise God~!
Now off to finish the getting the house ready for our little guy!!
Posted by Mrs. B at 11:11 AM
Tuesday, March 22, 2011
I would probably be a bit more relaxed about the whole situation...if we knew Mason would stay in till May! But...with Mason's conditions/Contractions/losing mucus plug ...Our little one could be here any day. LITERALLY ANY DAY!
So now were in a dead sprint to finish getting house ready for our little boy. We have lots of little projects on our list! Switching the Colby's room into the "Boy's Room" is our biggest project. Trying to figure out how get the most room out of the little space is a challenge. With some finagling both boys & all their things should fit in there just fine. (I hope) Mason will be in our room in his bassinet till he is ready for the crib or until after heart surgery. Just depends on how he is doing.
Our projects this week is sewing Mason's bedding (yep momma is making his bedding) and painting the room. Also we are going through all of Colby's clothes when he was a baby and washing them Mason. It makes my heart so happy to be doing these things!!!
Were not out of the woods but Im tired of being in the "doom & gloom". So only "sunny outlooks" from here on out!
I have an appointment with Dr. Evan on wed. I will have a growth ultrasound, cord pressure check, and amnio reduction. Were hoping this is the final amnio reduction I will have to have! Since Mason seems to being doing what he should in there and my fluid isn't rising as quickly. So again were praying for low cord pressure. If its too high...were delivering.
Posted by Mrs. B at 6:50 AM
Thursday, March 17, 2011
The 30wk mark that the Drs said he would never pass. That all his "conditions" would not allow him to survive.
To go from planning for a funeral...to planning the celebration of his upcoming birth! It honestly amazes me.
The hygroma that was to sure to make our Mason pass away....is now almost gone. A true miracle !
So yes...Today we CELEBRATE!!!!!
Keep strong my sweet boy. Your amazing the world!
Posted by Mrs. B at 3:08 PM
Saturday, March 12, 2011
My heart feels torn between happy & sad. Part of me is still to afraid to get excited just yet. We still have a long road ahead and some days my strength is running low. I feel like my happiness got overshadowed by all the worry I feel for the future.
All I know to do is take a deep breath...and pray.
We have a hard journey ahead still but our path seems brightly lit now. I feel releif in the fact that we can actually "Plan" for Mason now. That there is finally hope that we will get to keep him here on earth with us. We have been avoiding purchasing things for Mason, out of fear he wouldnt be here to stay. But I finally feel peace enough to start to make some purchases. It makes my heart flutter! Then a small cloud comes overhead. Worry. Worry of the challenges we will face with Mason.
I have heard several times... DS babies are so sweet, DS kids are like angels on earth, Mason is a special gift for a special family.
Part of me wants to scream! Im still dealing with the heartache that Mason will not be the perfect baby we thought we were having. There will be challenges that we will be facing that no one around us could even imagine. As hard as they try to understand what we are going thourgh... they cant really imagine how hard this is some times. Parents shouldnt have to worry about Open heart surgery,Feeding tubes , Developmental delays, or heart failure. But we have to ...because that was the hand we were dealt. Though some days I wish I could "fold"...I know it will be hard but we will be ok in the end.
I know people don't know what to say to us some times. "Im sorry" seems to be said often. That phrase ..."Im sorry"....sometimes stings. When those words are uttered with sounds and looks of sadness and pity. Like we received a death sentence. Although some days it sadly seems like we did. but 99% of those day we live like Mason will be just a regular baby. Yes he will have DS....but he will still be a baby. And that part we can celebrate.
*** I have had several people ask about purchases, letters, and cards for Mason. We are humbled by your generosity and I will be adding a contact feature to the blog with email & address.****
Also we got a treasure box this weekend from Kansas City Down Syndrome Guild.
They blessed us with a large box full of Down syndrome books, dvds, information hand outs for family & friends, a cute outfit for Mason, and lots more! I cried when we got the box. It was so full of great info. THANK YOU KCDSG~!
Posted by Mrs. B at 7:17 PM
Thursday, March 10, 2011
Today was "the day".
Today we went with our "team Mason" (Cory , I , my parents, and Cory's parents) to Dr. Evans office for Mason's echo-cardiogram.
This morning I had been up since 6am. I had cried on and off all morning. I had every emotion running through my body. Part of me didnt even want to go to the appointment for fear that they couldn't fix his heart. But since Mason is in MY uterus....I had to go.
We got to Dr. Evans office and I checked in while our family went to the waiting room. They took my vitals and then I joined everyone in the waiting room. We made chit-chat, but you could tell everyone had 1 thing on their minds....Mason. Finally I was called back for the 1st part of the sonogram. Cory, and "the moms" came back with me. We always have Terry do our sonograms. But being as Terry is in Florida right now (though I wouldn't mind going there to have the sono :) we had a different tech do the ultrasound....Joyce. ***This is where our "blessed" day begins*** We started the sono and Joyce took Mason's measurements. When she got to heart she said she knows about heart conditions first hand. She said her nephew just had open heart surgery in December for AVSD. That he was 4 months old when they did the surgery and he is doing great now.
What are the odds of our sonographer nephew having the same problem as Mason?
While we waited we got to ask Joyce lots of questions about the surgery (done at the SAME place Mason's will be!) She was full of answers and helpful information. Finally Dr. Gourtz and Dr. Evans came in so we could start Mason's evaluation. They focused mainly on the heart and valves...they mainly talked back and forth in "Dr Talk". Then finally they told us what they were seeing.
Here is our BLESSED NEWS:
**First off : Today Mason's heart looked like a whole new heart! Before it was a big black mass with only 1 chamber develped...now it has all 4 chambers and is only missing the center valves!!! Everyone was AMAZED ...even the DRs!***
Mason's hygroma is even smaller and should eventually go away!!
Mason's heart defect is called AVSD, the most common heart defect in babies with DS.
He has no other additional heart defects.
He wont need surgery till about 3 to 6 months of age.
His cord doppler ratio (cord pressure) is steady at 4.2
He SHOULD only need 1 open heart surgery.
He is on the road to make it closer to full term!!
His surgery should be pretty routine for AVSD. (not that I would call open heart surgery routine!)
We are so very very blessed.
We cried tears of joy and FINALLY feel like there is hope for Mason!!!
God is doing miracles with Mason.
THANK YOU FROM THE BOTTOM OF OUR HEARTS FOR YOUR PRAYERS....THEY ARE WORKING!!!!!!!!!!!!!!
Mommy loves you sweet boy....Thank you for hanging on ...Cant wait to kiss you little face.
Posted by Mrs. B at 1:38 PM
Wednesday, March 9, 2011
We have been waiting for this appointment for a long time.
We could have had this appointment done around 22wks....but they didn't think Mason would survive. So they set it for a later date....just so we wouldn't "waste" our time doing the long appointment just to have him not survive.
It make me so full of every emotion possible as we near this appointment. I feel mostly like crying. Happy tears that our little fighter has made it to 30wks and is beating the odds, and tears of fear of what the future may hold for our Mason. There as so many "ifs" and "coulds" in our life...its starting to wear on this tired mommy.
I have been looking forward to this appointment, looking forward to FINALLY knowing what can be done for his tiny heart. Then there is part of me that doesnt want tomorrow to come, for fear of more bad news. I have these fears about our appointment tomorrow... and the stress of these fears are wearing me out.
Mason's heart wont be able to be fixed.
That they find more things wrong with him
He will need surgery right after he is born (in KC 1hr away from our home)
Cord doppler pressure will be elevated (immediate delivery)
Hygroma will cause more problems
These fears take over my thoughts all day. All I want to do is pretend everything will be just fine. Continue on with life like we never got the diagnosis that had changed our lives.
When strangers ask what Im having...I want to cry.
I answer: a little boy...but inside i am thinking .. a very sick little boy... were praying we get to keep him here on earth.
When they ask when I'm due....
I answer : May 20th...then try to ignore their stares at my very large belly & comments of twins...while i really want to say "we may deliver any day now"...
But by answering the "polite" way I avoid having to tell all the things going on with Mason... I avoid the looks of pity, and they apologies they offer. I get to pretend for a few seconds that Mason is just another "normal" baby, that he isn't having to fight for his life, or that my heart isn't breaking.
I feel life getting harder...and I'm getting weaker. I'm ready to be done "holding my breath"!
I have an extra prayer request. My 4yr old niece is going in for surgery tomorrow as well. She is having her tonsils/adenoids removed. Her mom (my sister) has also just found out that her cancer is back in uterus...even after having the cancer removed less than a year ago.
Praying for a good day tomorrow.
Posted by Mrs. B at 2:56 PM
Monday, March 7, 2011
On Wed I had an appointment with Dr. Gleason. Just a normal "run of the mill" appt. (odd for us!) Blood pressure was normal 117/ 65. Urine test were normal also. Then came the weigh in....ZERO weight gain..again. This is 9wks of no weight gain. This is a little cause for concern. Mason is growing..but Im losing weight. I was sent in the next day to have a blood glucose test (it tests for gestational diabetes).
It is a test where you drink this yucky drink mix, wait 1 hour, then have a blood draw. Luckily my sister in law was kind enough to watch Colby while I did the test. (Thanks again Cheri). Dr called back this morning....I FAILED ...now onto the 3hr test.
Friday we had an appointment at Dr Evans. We did a growth ultrasound, cord pressure check, then an amnio reduction.
Growth scan went well. ( They forgot to give me the printout of all the numbers & percentages so I will enter those when I get them)
Mason now weighs 2lbs 13oz
His femur & humerus length is starting to drop on the charts (normal for DS)
His heart rate was 142 (like always)
His cord pressure is 4.1 (while resting... Worried how high it is when active)
**last scan, mason was resting and cord pressure was 3.5...so the pressure is increasing**
Fluid numbers was elevated again (as usual) and we did another amnio reduction. This one hurt pretty bad. They ended up not getting enough off so I go back this week to do it again before our BIG APPOINTMENT on Thursday.
Thursdays appointment is such a big appointment for us & Mason. We are doing a echo cardiogram on Mason's heart. We will finally know what they can do for his heart. If they can fix it or not, it he would need surgery right away, or if they can do anything at all. This appointment will give us lots of answers. We got our support team going with us. As long as I can mentally last till Thursday we will be ok.
Mommy is starting to finally feel better (thanks to some great meds to finally shake this cold stuff!)
Thank you again for your prayers. We will be needing them on Thursday for sure!
Posted by Mrs. B at 8:41 AM
Wednesday, March 2, 2011
I have been a bad blogger.
BUT...I have good reason.
I was looking forward to last week because for once I finally didn't have 20dr appointment in 1 week. Well that really didnt work out the way I thought it would.
Colby was sick all last week. So instead of me having a ton of appointment...we had lots of Colby appointments.
Here is our rundown of the week:
3 Dr office visits
1 chest xray
1 er visit
2 flu /rsv tests
3 Rx for meds
and 1 blood draw....
Colby had RSV. ***Respiratory syncytial virus (RSV) is a contagious viral disease that can lead to serious health problems—especially for young children***
Thankfully Colby is on the mend, but now mommy is sick. (because I need that on top of everything else going on in our life)
So hopefully things will go better this week .
Today I have an appt with Dr. G . We should do a sono to check Mason's cord to see how it is functioning. Also I see Dr. Evans on Fri for ANOTHER amnio reduction (#3 so far). Hopefully these appointment go well... because Im not ready to deliver Mason yet.
Here is a verse that was emailed to us the other day.... Thank you again for your prayers...
“For behold, I will create new heavens and a new earth;
And the former things will not be remembered or come to mind.
The sound of weeping or crying will be heard in it no more.
Never again will there be in it an infant who lives but a few days”
Isaiah 65: 17, 19-20
Posted by Mrs. B at 7:16 AM