Creed of Babies with Down Syndrome

Creed of Babies With Down Syndrome

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

For His Glory,

Jamberry Fundraiser

As a family we are partaking in a fundraising walk for where Savannah goes and Josiah went for therapy. PCCD is an AMAZING place and we are so thankful for all they have done and continue to do. Helping raise funds is one small way to give back.

It's late in the game, the walk is this Sunday. I had a freak accident and had to have surgery on my foot, so I can't train for the 5k (I wanted to do that rather then just the family walk) and then Joseph lost his job so I didn't think we could afford to register. I have given up on the 5k, but we are walking together as family and Joseph just got a new job, so we could afford to register. On top of all the craziness, I messed up the registration and we don't have a link for people to sponsor us. Augh! lol! :)

SOOOO I thought it would be FUN to throw a Jamberry Fundraiser!

Jamberry offers fundraisers where they donate 10% of all sales to your organization of choice. For us that would be The Professional Center for Child Development. As a thank you I am also donating 40% of my commission. My commission is used to help pay for our kids therapy and medical costs.


Here are some NEW fall designs:

What is Jamberry??   I am SO glad that you asked! They are heat activated, vinyl nail wraps that adhere to your nails for up to 2 weeks on your fingers and up to 6 weeks on your toes. Did I mention that there are over 300 designs to choose from! Prepare to become addicted!

OH and NO dry time! I LOVE that! I can do a few nails, then if a little one needs me I can just come back and finish later. How AWESOME is that??

Naomi and her Independence Day nails.

Want to see something neat? This is how much was used of a sheet of regular sized nail wraps for just ONE manicure. Your usage will vary with the length of your nails...and how close you can cut them to your actual nail length (which takes a little practice). If you have leftover middle parts, they can be cut for mix and match manicures, statement nails, or pedicures! $15 for 2-3 Manis and 2 pedis. Yes, please!

Who wants to buy an application kit? I basically give you one when you book a party with me! As soon as the first order of your party is placed, I’ll send you a goodie bag filled with a file, orange stick, Jamberry rubber tool, alcohol swab, a sample of our Nourish hand creme AND half a sheet of Jams! When you have Facebook party you can still go about your life. No need to clean and prepare for guests. Just sit back and have fun!

If you "like" my Facebook pages, you will be kept up to date on specials and info. https://www.facebook.com/ChristenJamberrynails 


Thank you for considering making a purchase. I will share pics and tales of our adventure this weekend at the trot!

Oh and one last note: 

Happy Down Syndrome Awareness Month! :)

For His Glory,

It's Done! Open Heart Surgery

It's done...it's DONE! Savannah had her open heart surgery and we are actually home now! Praise the Lord! (Actually I'm finally finishing this 7 months later. Woah! Were did the time go?!?) (Ha! I'm adding the finishing touches and Lord willing submitting it a year after her surgery! ;) )

It was a roller coaster ride. It kind of reminded me of Josiah's 4 months in the NICU. One moment things look good, then not... back and forth you go. It was also a roller coaster of emotions. Part of me was glad we where finally having the surgery, she will get well and thrive (Lord willing). Then the other part of me didn't want her (or us) to go through it.

Waiting before surgery.

     But there we were, facing the fact that we where waiting for them to take her to the OR  for surgery. We were tired, hungry and putting the life of our daughter in the hands of a surgeon we had just met. Though whether we think about it or not, our children's lives are always in God's hands and He can call them home whenever He wants!

     While we where waiting, someone on the medical team mentioned they were all excited for her surgery...that her case was highly anticipated. Though at first we were confused we eventually found out that the cardiologist surgeon was highly sough after and a bunch of hospitals were "fighting" for him and Tufts won! lol! She was his first case at Tufts and everyone was excited to work with him. Him was awesome by the way! He went above and beyond his normal duties to care for her, Coming in daily to see her, calling when he wasn't there, and even called our pediatrician after coming home to check on her!! :)

Right after surgery.

"Surgery went great! Praise the Lord! They are finishing stitching her up now and will bring her up to the ICU to get settled. They will keep her sedated for the evening. Thank you for your prayers! I will update when I know more. Thank you Pastor Jeff Haavisto for sitting with us."

Later in the day after surgery.

"The web here refuses to let me in to blogger. Soooo I will have to wait and to share details and pictures. I just wanted to say she made it through the first night just fine. Her blood pressure did go up at one point. but they got it down. They had to hook her up to the pacemaker at one point, what is was off of it this morning, smile emoticon They took the breathing tube out and attached her to a CPAP, so her lungs are partially working on their own. She was just groggily and awake and was miserable. I'm glad she is back asleep. Thank you for all her prayers and kind words!"

Still sedated that morning after.

"Selfie" the morning after surgery.

"Today has been rough so far. She's been awake often. Ya! But was uncomfortable and crying a lot earlier. Though she was just awake and staring, not all that responsive. Not sure which is worse for me. They wanted to take the chest tubes out (they let the fluid from swelling drain out), but that is not going to happen now. They were able to take the catheter out though. Please be praying, I spoke up this morning that she looked swollen and her breathing was really retracting again. They agreed and upped her meds to help her body drain the fluid out, which will help the breathing. it's working she looks better and her breathing doesn't sound so "wet." BUT the air bubble that's next to her lung has gotten bigger, not smaller. We are waiting for the surgeon to get out of the OR and with his permission they will sedate her and insert a tube into the side of her chest, so Lord willing the air will escape. We had to do that for Josiah so his lungs wouldn't collapse, while in the NICU. This is bringing back emotions from Josiah."

Thursday after her breathing tube came out.

Daddy's holding my foot. :)

Savannah hates her legs and feet covered, including when she sleeps, she'll kick the blanket off. The nurses learned that pretty quickly!! Even while sedated she would fuss and squirm a little and they discovered it was because they kept trying to cover them. To this day that make she chuckle...she is already SO opinionated! :)The picture of daddy holding her foot is special :) It was her way of comfort and tjrough the drugs her was her way of acknowledging that she knew daddy (or mommy) was there! When she heard your voice her little foot came up and she would relax a bit when you would hold it. It was incredibly hard not being able to hold her and comfort her through the pain!

Miserable, swollen, and not doing well today.

"wow, it's taking forever to deal with the tube! It's been over an hour and they are still working on her, not sure what's going on..."

A new tube was added today, to remove air and fluid, so my lungs wont collapse.

SOOO, Joseph came to visit and shortly after he arrived they announced that they indeed needed to put in an extra tube into her lung to help drain trapped air out (okay again memories of Josiah and his lung issues come flooding back). We where not allowed in her room nor the PICU at all while they did the procedure. We where told it wouldn't take very long (half hour I believe), so go grab a bite and they would come get us. WELL....it took over an hour. We thought perhaps they had come for us and we had been in our room eating (you can't stay with your child in the PICU), so we went into the PICU to find out. Well her room was still full of people and we were told they weren't done yet and as soon as we stepped out an alarm starting going off, with lights flashing, and the intercom announcing a code red in the wing that the PICU is in. I'm all of a sudden super nervous and starting to freak that it's Savannah and her heart is failing or something. It turns out she was completely fine, they had an issue and it took longer then expected and a code red is fire...code blue is heart (duh! Hah! I do know that, but in the moment we completely forgot). There happen to be smoke somewhere on the floor and they had to shut it down for a short bit. :)

Look at the bow the nurses put in my hair. :)

"I didn't sleep well after yesterday. She looks a lot better. The swelling has gone down. They just took the pace maker wires out (they go in through the skin and lay on the heart) and spent the morning discusses the game plan and readjusting her. She is finally sleeping and all is quite. Last night's x-ray looked good, but they have done 2 more. Her breathing is still "tugging" (picture below the ribs, her upper stomach caves in when she breath.) it shows there is still some air pockets and fluid. It keeps changing. The nurse says her stats (CPAP) look good again, yet just told me her x-ray didn't look great so they are looking at. To sum it up, heart is doing great! Respitory not so much! They started feeds through the tube and are waiting to make sure there is no "milking" (a nick in the gland?). I believe if all is well, they are going to take 3 of the 4 tubes out of her so she will be more comfortable. Sorry if this is confusing. Info literally keeps changing even as I type. Overall heart-doing great. Breathing-not so much. Thank you for your kind words and prayer! When your here you forget there is a world outside.

Friday, awake and doing better.

"Yesterday was another long day. Yet it was better. There was just a lot of adjusting and changes so she was uncomfortable and cried or looked stoned. They took the 3 chest tubes out. It was crazy to watch. They are good size tubes that go into her and are really far up into her body!! She is awake when they took them out and stitched up the holes. All the changes though where steps towards healing and getting closer to going home. She wound up having more chest x-rays then I could keep count. At one point the x-rays looked worse and that was a huge concern. So they redid them, and it looked fine (it was blankets originally causing the issue). Praise the Lord!! She was still really tugging when she breathed, but we where/are hoping it was just "splinting" (not taking deep breaths due to pain). She spent a good part of the evening crying in pain, so they had to give her a double dose of meds. But she did great through the night! They took the last tube out this morning and took her off the high-flow and put her on low oxygen (a very good sign)."

Tube's out...drugged up once more.

"I got to hold her!!! and am going to attempt to nurse her today! smile emoticon We had WAY to much fun at rounds today talking about her. smile emoticon Because she's doing well and we could be silly and light hearted. smile emoticon Lord willing we are coming home tomorrow! smile emoticonsmile emoticon We had WAY to much fun at rounds today talking about her. smile emoticon Because she's doing well and we could be silly and light hearted. smile emoticon Lord willing we are coming home tomorrow! smile emoticon"

Daddy took a picture of me holding her for the first time. Cried my way through it, so did she. So much pain!

Overall Savannah's surgery took place September 23, 2014 and we got to go home Sunday afternoon, September, 28th 2014. Praise be to our God for her safe surgery and recovery, for her life and health! Thank you to Pastor Paul and Peggy for coming to see us before we went home. That meant the world to us! Thank you to our church family that continually prayed for us and brought us meals! Thank you for everyone's love, prayers, and support as I updated you on FB. Last but not least, thank you to everyone at Tufts...our surgeon, cardiologist, respiratory specialists, anesthetists, nurses, doctors, cafeteria staff, all the employees that clean the hospital, and everyone else that I missed. You all made Savannah and I stay as comfortable, safe, and enjoyable as possible!

Holding her again, she's feeling much better!

We get to go home today! Praise God!

For His Glory,

The Day I knew...

The date was April 11, 2014....it was the day our amazing, sweet Savannah was born.

 She was my first baby to come late, she was born about week later then her due date. She was also my longest birth! Looking back it makes sense that it took so long and that her head was tilted at a funny angle so that she couldn't come out until we could adjust her.

We can attribute it to her low muscle tone.

Looking back it makes sense that they had to immediately cut the cord and couldn't put her on my chest...that she was so very, very quite...that she was purplish in color.

It WAS her low muscle tone. She needed to be warmed and examined before giving her to me.

Looking back it makes sense why they asked for my husband to wait for the pediatrician to come and examine her and why they asked permission to bring big sister Dakota to the nurses station, when he did show up.

That day I knew, after I got an uneasy feeling when the doctor and nurses whispered while examining her and it felt like everyone held their breath over what reaction my husband and I would have to their news...

When the doctor started talking about physical features that combined was not normal...

That day I knew as I looked down at that precious, wide awake, beautiful, quite, blessing of a bundle...

What it felt like to have a child with Down Syndrome.

That diagnosis that so many people fear and dread. That diagnosis that so many people test to try and determine before birth. That diagnosis that so many (90% or more) people kill their unborn child over...over fear of it.

Later in the quite of the room as I looked down at our beautiful little girl...I thought, so this is what it feels like to have a child with DOWN SYNDROME...it's not so terrifying...it's not something to dread. Savannah is our daughter that God entrusted to us and I am at peace with that gift. 

Why?! Because...

I will praise You, for I am FEARFULLY and WONDERFULLY made; marvelous are Your works, and my soul knows very well. Psalm 139:14

Saturday is WORLD Down Syndrome Day...will you help me bring awareness? 

Do you know anyone with Down Syndrome? I would love to hear about them and what your plans are (if any) for Saturday.

For His Glory,

WELCOME TO HOLLAND

A poem about Down Syndrome...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to 

understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian.

It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... 

and you begin to notice that Holland has windmills....

and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.

 And for the rest of your life, you will say "Yes, that's

where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... 

about Holland.

c1987 by Emily Perl Kingsley. All rights reserved.

For HIS Glory,

Jamberry Mystery Hostess Party

     I hope the Winter Season finds you  well! I have been super busy recovering after Savannah's surgery (she cried almost all day for 2 weeks, then had to find a new routine) and Josiah has had a bunch of therapy evaluations and changes. Add homeschooling and being a mom/wife/housekeeper and well you know, like gets pretty crazy!! :)

      I have to share as I type this I'm listening to Savannah babble away, what a wonderful (praise the Lord) change! :) I also have an update half-way typed up.

     In case you didn't know, I am a consultant for Jamberry Nails. Yay! I LOVE my Jamberry nails! I am trying to grow my business, so I can raise funds to pay for Savannah and Josiah's medical and therapy bills. My husband now has a job...praise the LORD!! We are working hard at paying off all our debt and then saving up a down payment for a house (Lord willing), so I would love to be able to chip in a pay Josiah's weekly therapy bill and Lord willing, pay any other medical/therapy that gets thrown at us.

     Sooooo....drum roll please ;)....I'm having a Mystery Hostess Party! You can enter in now through the end of the month for your chance to win ALL the hostess benefits! Through the end of February the theme is Going, Going, Gone. There are a ton of wraps and lacquers that are going away, so get them while you can!!

Love Jamberry? Are you curious and want to give it a try? Well here's your chance to win FREE shipping, products and 1/2 price items.

How does it work?
-Place an order and get 5 entry points.
-Like my Facebook Page and get 2 entry points.
-Subscribe to my email list and get 2 entry points.
-Head on over to the party on Facebook to play some games and learn more about Jamberry and myself.

Go ahead and enter via rafflecopter... the winner will be announced Friday night 2/27 .



Going Going Gone Mystery Hostess Rafflecopter Giveaway


FYI, I can always mail you a free sample if your interested. You can also host a Jamberry party in home and/or through Facebook. I would love to throw you a party! Contact me if your interested.

Want to give Jamberry as a gift, but don't have time to order and have it shipped? You can always order a gift card though my website!

Open Heart Surgery Date Set

It's been a long week and a half. 

There was all kinds of changes for Josiah turning three and all kinds of "ups" with him. We had, had all "downs" you could say with Savannah.

After talking with the cardiologist and finding out they set Oct. 7th as her surgery date, we discussed her health at that point.....it's not great. They have upped her surgery to this Tuesday, Sept. 23.

-She is still struggling with labored breathing. It's gotten worse, the lasik isn't keeping up with it as much.

-Her weight gain has been REALLY slow and has once again plateaued. We tried to increase the calories again but her tummy couldn't handle it and ultimately she couldn't keep it down. So...
                      1. Risk of aspiration.
                      2. Back to square one with calories and no-little weight gain.

-We are heading into "sick season" and she's at a higher risk of getting sick (has to do with having Down Syndrome) and with her heart right now, depending on the illness it can be deadly to her. Last Sunday at church we found out THREE different families had phenomena and another family had the respiratory virus that has just hit New England form out West. All of that would be DEADLY to Savannah!!! If she where to get a cold...they would have to push the surgery out for another 6 weeks!! Her heart is failing....her lungs are failing...she can't take another 6 weeks they tell us.

Spending time with Daddy, telling him a story.

Princess Pudding Pops

     They had us come in this past Monday for her pre-op appointment. That was a lot of work and am SO THANKFUL that Daddy stayed home with the big kids!! We went to the lab for blood work, then for an x-ray (she has to sit while we hold her arms straight up. It's very uncomfortable, but was able to stand there and looks at her and calm her down...Thank you Lord), then an Echo was done. At that point she had, had it...she was poked, stretched, then sticky tabs where pulled off her body...she screamed then finally went to sleep, which was perfect. 

     Next we had another sonogram done of her heart. We used the half hour to talk with the Anesthesiologist about the whole thing. We then had to get more blood work done (so cruel!!), this time they took her from her head...I walked out of the room...I couldn't handle that. By that point she wouldn't stop screaming. I met with the surgeon and discussed the surgery with him, while she screamed. :p Finally they took us up to the ICU to see it, meet the nurses and was given my instructions for the night before surgery. At that point she was giving "hate look" to everyone...I have never seen her give looks like that. lol!

A cutie in Daddy's arms.

In awe of Daddy.

My 5 month daughter is having open heart surgery.

My daughter is having OPEN HEART SURGERY.

MY DAUGHTER IS HAVING OPEN HEART SURGERY.

I've said it out loud...I've whispered it...I've cried it.

Once again I am handing it over to CHRIST.  Fear and worry does nothing. but drain today of it's joy. 

     God is in control...I am NOT. No matter the out come...not mater what happens...good or bad. God is in control!  HE created her...HE loves her more then we do...HE had entrusted her to us, but ultimately she is HIS child, not ours. There is NOTHING I can do...so I will PRAY...pray for the surgeons and medical team, the hospital, against germs and infections, for strength for her body and heart, for peace and strength for our family, and for grace. Then I will again hand my fear and worry over to HIM...the AUTHOR of LIFE.

DISCLAIMER: I am about to describe a summary of the surgery and what to expect after. 

If you can't handle that type of thing, then don''t read and further. :) 

     The night before (as in tonight) we have to scrub her down with a special soap they gave us and again in the morning. We have to be there for 6 am in Boston. They are going to cut down the soft bone on the rib cage (the bone that connect the ribs in the middle), they will then pull back her ribs and in order to fix her heart they will take a dime size piece of her heart to patch up the hole (he said it's just like patching a hole in clothes), he will literally tie off the artery that is still open. I don't think he is going to touch the smaller hole in her lower chamber and he mentioned that typically there is a hole in the upper chamber that they can't see and if that's the case he will stitch that hole up.

     I don't know how they keep the heart pumping...I kind of tuned out at that point. I know she will have a pic in a main vein and a breathing tube in. He will then wire the rub cage back together. The surgery should take about 6 hours.

     Lord willing, she will spend about a week in the ICU before coming home. They said the first few days there will be ups and downs with her health, until her heart "gets it" and then she should take off health wise. :) When we come home you have to be very careful how you hold her, due to her bones healing. I'm nervous about that. But once she stabilizes she should take off health wise, grow and have way more energy!

For His Glory,