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 DownSyndrome.
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 DOWNSYNDROME...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
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.
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.
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!
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!
It's hard to believe 3 years ago I suddenly went into labor and Josiah was born...we had no idea if he would live or die. He wasn't breathing, but praise be to God, he finally started breathing and they rushed him to the NICU. God has saw fit to allow us to raise this precious little boy for 3 years now!! I'm still in awe.
As the 3 years have gone by I am more and more in awe of God's mercy towards us with Josiah!
The First thing I learned was h0w merciful God has been in regards to Josiah's health.
We were told due to his premature lungs he would have all kinds of breathing issues, including severe asthma. As of this day there is NO SIGN of asthma!! Thank you Jesus! Thank the Lord I found out after the matter, but was later told they had prepped the ICU for after his all day surgery. They did not expect him to handle it well particularly his lungs... to everyone's surprise he was able to go to a typical room/floor. Even when he had the flu he did not need to be hospitalized.
The second thing I have learned is how merciful God has been in regards to his cleft lip/palate.
Josiah had his big clinic last Friday at Children's Hospital and at one point I was so humbled I wanted to weep. Most of the kids there were there for cleft lip/palate follow ups. You could TELL they had surgery for cleft lips...Josiah on the other hand...not so much!! Sure if you look you can see it's different looking, his nose is some what crooked, etc. I can't tell you enough how humbled I was to see such a HUGE difference!! No it doesn't matter if you can tell or not...but the fact that God allowed Josiah to be barely noticeable...I was speechless...I just assumed the other kids looked like him. Also his tooth that is behind the front row, to everyone's surprise is an extra! That's a good thing! :) Better to have extra , then less I was told. Thank you Jesus!
Rocking Dakota's sunglasses. :)
Last but not least, I learned how merciful God has been with Josiah's therapy. While in NH we had Early Intervention for him. They started with O.T. then we had a long struggle with literally teaching him to eat (so many factors I never thought about), swallow tests and more feeding therapy, then finally some physical therapy to try and get him to walk. Praise the Lord, he was walking by about 2 and learned how to walk on the uneven ground outside this past spring. :) But then there was a gap after we moved . After Savannah was born with Down Syndrome we finally got on Early Intervention in this area...Praise God! After evaluations we finally started working on speech therapy, but still have a long way to go, though he is saying a few words! With turning 3 means big changes, he "ages out of E.I." So we started the process of seeing about possibly getting him therapy through the school system and after talking to Savannah's therapist, we decided to try and get an evaluation at a private place and started with North East Rehab.
Since we still hadn't heard from the school system for further evaluations, where we go for E.I. agreed to allow him to stay in his little 2X2 group through the fall, so he could continue to work on sign language and communicating with kids his age. He LOVES it! We have to pay out of pocket, but I am still thankful there won't be another gap and delay for him! Then Thursday when I took him to his evaluation at North East, to my (and his E.I. therapists) surprise (and delight) was told he qualified and would start right away on therapy. We expected months of waiting and go from place to place for evaluations. God took it one step further and they are also approving him for some much needed O.T and Physical Therapy! Praise God!! I FINALLY feel like we are getting help for Josiah and Lord willing, can get him caught up and strengthened physically.
Some helpful things I learned (which I'm so excited to have answers):
The specialist in Boston pointed out he makes A LOT of sounds in the back of his throat. This is bad and will eventually damage his vocal chords, which is a big concern. We don't want to discourage ANY sounds he makes, but instead get really excited and encourage sounds in the front of the mouth. She doesn't think his palate or extra tooth are causing the issues in speech, yet if he hasn't made huge improvements within 6 months she wants to reexamine that sooner then a year.
showing you what the dental team did. :)
During his evaluation at North East ( I can't tell you how excited I was after meeting his new therapist) she was talking about kids the have weak muscles (make an o face...those muscles) when drinking from a straw stick it far back in their mouths and bite down. Josiah does this!! We had no clue it was due to his weak muscles! Because of that his swallowing becomes uncoordinated and it again comes out his nose. She has a device to work on that. His soft palate needs to be strengthened and he is very nasally. I found out when he is blowing on his food, he's actually blowing out his nose, not his mouth (it's hard to tell his face is all scrunched up)...so she has a device that will gently pinch the nose closed so he can't use it and will learn to use his soft palate and be aware of sounds from his mouth. SOOO freaking excited about all of this!! :)
Whoops, missed his mouth. ;)
I just want to say that even if God saw fit to not show mercy in any or all of those areas, HE is still a merciful, loving, God. I am a sinful wretch and do not deserve any of it and am so thankful for His sweet blessings and mercy!
No, that is not lipstick! He got into the girls red paint, I guess the sponge brush felt cool on his lips. lol!!
I thought this song was perfect, though I couldn't find Aaron Keyes singing it.
I can't believe 3 years ago I was in the hospital on bed rest wondering if I would make it to 24 weeks...if Josiah would live...if I would be okay. God was/is merciful and our miracle baby is going to be 3 in a few short weeks!!
With turning 3 though means aging our of Early Intervention. As in THE DAY he turns 3, no more therapists coming to the house, no more speech therapy group, no more free "rented" resources from them. Early Intervention has been there since the beginning. From occupational therapy (strengthening particularly his core/ upper body), to nutritionists, weight check ins, feeding & swallowing test, feeding therapy, to eventually teaching him to crawl/walk before moving from NH. Though he's still not talking, I have to remind myself he's come ALONG way since birth!
Savannah's therapist does certain message exercises to struggle her muscles orally to help her feed better, which will in turn help her when it comes to talking (babies with Trisomy 21 struggle with that). I am VERY frustrated that no ever mentioned, did or taught me to do that with Josiah. He didn't orally eat so they knew his muscles needed to be strengthened eventually so he could eat. We have learned that's one reason for the delay in speech...his muscles are too weak. So WHY didn't anyone work with him or teach me to, from the beginning??!? I had no clue back them.
Here's is a video of me sort of doing one of the messages. I'm not doing it properly because I was trying to get her to laugh for the camera. :)
So where does that leave us? We are waiting on his evaluation with the public school. We have an apt at the end of October to hear what they have to say. I am also calling private therapy locations that the E.I. therapist recommend to book evaluations. He has a clinic on the 5th with the surgeons and will need a letter form them for the insurance and then we have to pursue trying to cover his therapy.
So in the mean time, God has shown His mercy again, Josiah's E.I. therapy group is able/willing to keep him on through the fall session as a community kid!! The downfall is we have to pay for them completely out of pocket and he will go from 3 days of therapy a week to 1. BUT there won't (shouldn't be at least) be a gap in his speech therapy while we work on finding him some where else to go. :)
Then as you know the plan is for Savannah to have open heart surgery. Right now we are looking at the second week of October but we shall see. I am working on finding out what the insurance covers, making sure she is covered for it, and if they/I need anything.
That being said I am looking to help my husband out with raising funds to pay for Josiah's speech therapy and any "tools" we will now need to buy, plus help cover any medical bills from Savannah. I am doing that by selling Lilla Rose and Jamberry Nails.
Lilla Roseis having an awesome sale going on. 1. There are several NEW designs and they are 10% off!!! 2. Soon to be retiring designs are 20% off!! Grab them while you can. 3. Every purchase you make you will be entered into a drawing for a design of your choice.
Any profits I make on sales will be used to provide Josiah with speech therapy, since he will no longer qualify for E.I. come next month. Thank you for helping us with this expense, we so appreciate it! :)
.JPG)
.JPG)
.JPG)
.JPG)
.JPG)
.JPG)
.JPG)
.JPG)
.JPG)
.JPG)
.JPG)
