Stay up to date on the most current resources, information and support services for children with trisomy. Along with all the information we will also be posting JOURNEY'S of children living with rare diagnoses as well as sharing our own experiences of raising our children.
St. Gerard, who, like the Saviour,
loved childrenso tenderly
and by your prayersfreed many from disease and even death,
listen to us who are pleading for our sick child.
We thank Godfor the great gift of our son/daughter
and ask Him to restore our child to health
if such be His holy will.
This favour, we beg of you
through your love for all children and mothers.
Amen.
Thank you dear Lord Jesus, for the gift of our children. You have graced us
beyond our comprehension. Please guide us in the care of these Treasures. Give
us wisdom to make the best decisions for them. Give us patience and charity so
that we can advocate for your precious ones. Give us fortitude, so that we will
not give up before it is time. Give us peace when our hearts our troubled with
worry. Bless our children with all that they need in this life.
And for our children who have gone to be with You, thank you for holding them
in eternity as tenderly as we held them on earth.
I asked our families this week to let me know if they would like to add a prayer request for their child. Many parents responded to my request. I will list all the requests below but I would like to acknoweledge one request first.
Sweet Presley's mom had asked for prayers for her son here is what she wrote..."Presley
is trisomy 13 and is in the hospital. He's 16 weeks old and down to
4lbs. The doctors gave up on him and he's fought so hard but with no one
helping in his fight his poor body can't do it alone. Please pray for
peace and no more suffering."...Sadly baby Presley gained his wing before I was able to publish this weeks blog post. I am now asking that you prayer for his family for comfort and peace as they embark on the next step of their journey.
Prayers for Brilen who is currently hospitalized
Nathaniel
Johnson (Trisomy 13) has been taken by the state and put in a foster
home. Mom has only seen him once in 5 months. Please pray that he will be home with his family soon.
Tiffany Lauren Williams 24 prayers for her to keep up her oxygen levels up
Pray
for Natasha her heart later is getting low and mom is scared and asks for prayers to keep her out of the hospital
Angel is hospitalized with RSV and is having a rough time recovering
Prayers for Trinity that she will be able to wean off the vent and be home with her family
Audrey Olivia...She's in the hospital with an RSV and is back on oxygen
Please
pray for Kaela Stobbe age 15mos Full T18...not sick at this moment but
lower 02 Sats a lot lately and more tired..concerned she is starting
resp failure....she has a large VSD and 3 ASD's with pulmonary
hypertension...cannot repair heart...also a Thyroglossal cyst that is
growing
Wassim is in the hospital after cardiac arrest early this week
Please
pray for Owen Tidwell. He is six months and if he can make it to Monday
it will be the longest stretch not in the hospital since he was born.
Today his color looks off even though his sats are good so pray he is
not getting sick again
Prayers for comfort for all the families that are currently pregnant and just received the Trisomy diagnosis. There are many other children that are in need of prayer that are sick and hospitalized, please remember them all in your daily prayers.
Next week we will feature some great FREE resources and products for special needs children. Until then....Embrace Life One Moment at a Time!
I know this week we were going to share an archived Treasure Memory story, but I have decided to highlight a new story. My dear friend Natasha has created a wonderful page for her angel Elizabeth. Along with her page every year she runs an auction called the Elizabeth Experiences and all proceeds go to Now I lay Me Down to Sleep https://www.nowilaymedowntosleep.org/. NILMDTS is a wonderful nonprofit organization that has provided thousands of families of
babies who are stillborn or are at risk of dying as newborns with free
professional portraits with their baby. I ask that you go and like her page The Elizabeth Experience and keep up-to-date on her next auction. Now here is a little about Elizabeth.
September 10, 2010 was the happiest day of our lives; that is when our sweet baby
girl, Elizabeth Anne Trompler, entered into this world. She looked beautiful and
perfect to us; little did we know the challenges that would be facing us. It is
only through our faith in God that we have been able to make it through this journey.
He is the One that has held my shattered heart together.Not long after delivery,
the doctor warned us of some abnormalities and deficiencies. Just some of these
worries included an underdeveloped brain (which caused many other symptoms such as
the inability to suck and swallow, make voluntary movements, breathing issues, etc),
multiple holes in her heart, enlarged kidneys, clenched fists, rocker heels, gastrointestinal
problems, and blind. Elizabeth never opened her eyes, and the doctors believe they
never developed. You would never know though by just looking at her sweet, sweet
face. After days of testing and observation, we finally received Elizabeth’s diagnosis,
full Trisomy 13. Most babies that are diagnosed with this disease do not make it
to birth. Those that do make it to birth do not usually make it past one year old.
Elizabeth lived 24 days. At first, I refused to believe my baby girl’s condition
was terminal. Every minute I was not spending cuddling my sweet Elizabeth, I was
researching Trisomy 13. At that time, I could not find anything encouraging online,
and I did not have all the Trisomy family contacts and support system I have now.
Through a family member, I did have one contact, but in my stubborn mindset, I did
not use her as a resource. I was an overwhelmed, first time mommy, not wanting to
hear the realities. I encourage all families facing such a diagnosis as Trisomy
13, or a related illness, to reach out and find a Trisomy support system.
I remember sitting in the NICU, holding Elizabeth against my chest, and crying. Her
little body would rise and fall against mine, as the tears flowed down my face and
I gasped for air. I remember my tears splashing against her sweet face. I remember
her soft skin under my lips as I covered her face in kisses. I remember how she
felt in my arms. I remember her sweet baby smell. I remember how she had my pout.
I remember how she defied the odds and sucked on her passy. I remember how she
instantly calmed down in her daddy’s arms. She loved when he rubbed his whiskers
against her face. I remember how she stretched with a purpose, despite being told
her movements were involuntary. I remember it all. I remember.
After nine days in the hospital, we were finally sent home on hospice care. It was
so frightening leaving the safety nets of the hospital and to be expected to run
Elizabeth’s medical equipment at home, but we did it. I firmly believe God will
never give you more than you can handle. He would not allow us to be sent home if
He knew I would not be able to care for her. I am so thankful we had those precious
days at home with our daughter. This gave us the time to make better memories outside
of the hospital environment.
While we were home, we were blessed to receive services from “Now I Lay Me Down to
Sleep”, which is an organization that does complimentary remembrance photography
for families with terminally ill babies or babies born sleeping. Our NILMDTS photographer
spent over four hours in our home capturing the most perfect moments with our sweet
angel. We cherish our photos, because this is all we have left by which to remember
our sweet baby girl. We no longer have our daughter to hold in our arms, but we
will never forget her beauty, and the love and grace she brought into our lives,
when we look at her pictures. Thank you NILMDTS for this precious and perfect gift.
Last year, I started a fundraiser in Elizabeth’s honor, named The Elizabeth Experience.
As part of this fundraiser, we held 2 events, and raised approximately $2,000 for
Now I Lay Me Down to Sleep as a small token of our appreciation. We would love to
make this an annual event to continue honoring our daughter, showing our appreciation
to NILMDTS, and helping ensure other families continue to receive the blessings of
their services. Last year’s event page (via Facebook) was “The 2011 Elizabeth Experience”,
but I am in the process of creating a new Facebook page that will be good for all
future years, simply titled “The Elizabeth Experience”. Please check out our page
and help contribute to our event.
We still miss our Elizabeth Anne, and always will. She will forever have a grasp
on our hearts. We are thankful we had our 24 days with our daughter, and we would
never trade those for the world.
If you would like to follow Elizabeth’s story and my journaling from her diagnosis
to her death and life beyond, please visit her Caring Bridge page at www.caringbridge.org/visit/elizabethtrompler.
Natasha Trompler
We hope
these stories of children with trisomy will inspire you. From cleft
lips to contagious smiles, group of families are here to offer you
support as you begin
your trisomy journey. It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa
KINGSTON JAMES WHITMORE ~ FULL TRISOMY 13 ~ AGE 29 MONTHS
My son, Kingston James Whitmore, is 29 months old and living with
Full Trisomy 13. When he was just six days old, the geneticist came to
our room and gave my husband and I his diagnosis. We both were
overwhelmed with devastation and felt like we had just been hit by a MAC
truck. Shortly after receiving this news, the Neonatologist came in
and told us, “We aren’t going to do anything heroic, but we’ll keep him
comfortable…Floral Haven (the local cemetery) has free infant burial
plots and we have people from our Child Life department who would like
to help you during this process.” Neither one of us could stop
crying...We just held each other and sobbed in utter disbelief. We
almost couldn’t believe what we were hearing. We told them that that
wasn’t good enough and that whatever any of our other healthy kids would
need or get, that that is what we wanted done for Kingston. Much
of this came as a shock to us because prior to Kingston’s birth all that
had been confirmed was that he had holes in his heart. We had toured
our local NICU and prepared for heart surgery but little more than that.
Although they did say there was a possibility that Kingston might have
a chromosomal disorder they didn’t really think that was going to be an
issue and because I had an emergency appendectomy when I was 8 months
pregnant with Kingston there was not enough time for me to recover from
that and still be given any type of accurate genetic testing. I had
majored in Special Education just ten years prior to this. Little did I
know how all that time God was preparing me for such a time as this…
I
remember crying in Kingston’s room in the NICU asking my husband if he
had thought about what he might say at Kingston’s funeral if he died.
He paused for a minute and then said yeah, I thought about it but I
don’t think we can focus on that…because if that’s what we think about,
that’s the direction we will go in. I agreed 100% and since that day
neither one of us has ever looked back. We weren’t in denial about the
diagnosis but we knew that God’s Word supersedes man’s word. We are
spirit filled Christians and chose to stand on God’s promises. The
scripture, “Psalm 118:17 – I shall live and not die and declare the
works of the Lord” has been what we have claimed for Kingston. In
his 29 months of life he has been hospitalized somewhere around 320
days. Kingston has literally defied death multiple times. The most
significant time that seems to stand out in my mind was two months ago
when he got hypernatremic dehydration while in the hospital. Our Dr
called Kingston’s room and said, “Kingston has life threatening
dehydration. Call Victor now. He is probably not going to make it.”
We called all the family in, pulled our kids out of school and began to
pray just like we always do. I cradled his body, hovering over his
hospital bed until he was stable enough for them to let me hold him, all
while praying and speaking to him that he was going to live and not die
and declare the works of the Lord! I reminded him that he was a
warrior and that his Daddy and I were his battle buddies…that we would
make it through this together. Long story short, he defied death and
has left the physicians at our local children’s hospital stunned and
speechless. All glory be to Jesus Christ!!
My advice to anyone
just given this diagnosis for their child would be to decide what you
are going to believe and stick to it. Focus more on how to LIVE with
your child (no matter how short the time may be) instead of focusing so
much on how to let your child die. No matter what the doctors give as a
prognosis or what the nurses report or what tests state…you are the
parent of your child and God’s Word says that YOU have the final say
over your child. Claim what you believe and do not waiver. It has not
been an easy road for us, BUT I believe it is our faith in Jesus that
has gotten all of us this far.
Kingston is nothing like the
doctors told us he was going to be like. Yes, he has had his share of
medical struggles but what they don’t tell you is how these children are
completely capable of loving someone and having an emotional exchange
and connection. Kingston is such a fighter and almost never complains
(or cries) unless he is in severe pain. He has a smile that lights up
any room and you can’t help but fall in love with him. His enthusiasm
for life is so evident. He has taught me that nothing is worth
complaining about…If he can sit there and smile at me after just having
eye surgery, breathing with a trach in his throat, eating with a tube in
his tummy, barely seeing or hearing and not have a bad attitude about
it, then I sure have nothing to complain about. He is always such a
good sport and makes the best of any situation. He has such a
contagious joy that you can’t help but become overwhelmed with happiness
when you look at him. When I’m having difficult days and feel like I
don’t know how much longer I can go on, K reminds me that no battle is
too big or too hard for the Lord. He is a motivator and a world
changer. He is a constant reminder of the Love that our Heavenly Father
has for us. He finds so much joy in the little things that we may take
for granted like taking a bath or letting the wind blow through our
hair. It’s funny but I actually think the wind is his favorite
thing…you let wind blow across his face outside or push his hospital bed
really fast down a hallway (so he can feel the rush of the air on his
face) and he will laugh for 5 minutes straight!! He has such a genuine
love and appreciation for every moment in time…even the seemingly
insignificant ones. Bottom line, Kingston James lives a happy and
thriving life. He has made me a better Mother, wife and woman in
general and he has taught me far more than I will ever teach him. I am
honored to be his Mother and as long as there is breath in my lungs I
will always fight for him and all trisomy kids. We believe that some
day, our Kingston James will be walking around carrying his King James
Bible and sharing with the world what God has done in his life! Thank
you for allowing me to share his testimony with you. If you would like
to see more about his journey, please visit this link at YouTube.com http://www.youtube.com/watch?v=GZINNWrQqjo
We would like to thank Lori for sharing her amazing son with us. All of these amazing children have a testament to share, whether they touched this this earth for minutes, days, years , or only through their mothers womb. Never give up hope!!
We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa
This weeks spotlight speaker is from a company that is near and dear to the hearts of Living With Trisomy 13. Judy McCrary is the Home Health Specialist at Neotech Products. Neotech is a wonderful company that is dedicated to providing everything that a medically fragile child needs. They are the sponsors of our GOODY BAG giveaways that we run twice a month. Here is a what Judy McCrary had to say:
Hi, my name is Judy
McCrary and I’m the Home Health Specialist at Neotech Products, a company I’m
very proud to be associated with. I am a
trained clinician, a respiratory therapist, and have worked in the NICU, ICU,
CCU and in the ER. I enjoyed my work in the hospital but then transitioned into
home care where I felt like I really made a difference. I have also been in
sales and management roles with a major home healthcare supplier. I started the
Home Health division at Neotech a year ago now and we have grown so much in
that time. I’d like to share a little about Neotech.My husband Craigwas hired at Neotech in 1991 and it’s been a joy for me to watch him and the company grow
over the past 21 years. I actually worked with Dr Heyman, Neotech’s Medical
Director, back at St Josephs hospital in Burbank years ago.Neotech started 26 years ago in Southern
California as a small medical device company creating products for premature
babies in the NICU. One of our most popular products is the Little Sucker, a
very easy to use, effective nasal and oral suctioning device. At the AARC trade show in
2011, Dr Heyman had a “light bulb” moment and he wantedthe company focusing on Home Health. Knowing
that many of our products were already being used in the home, we decided to
focus more on how we can help parents. Now we work directly with parents, DME’s
and Home Health Care Clinicians. My work is
incredibly rewarding. Each day I feel that I am making an impact, and I love
the relationships I’ve developed, especially with parents, who I now consider
friends. I know that being a parent with of a child with Special Needs can be
challenging, frustrating and at times, difficult. That’s why it’s so important
for me to help you with products that can help and listen to your concerns, and
even develop new products. I am proud to be
a part of our team here at Neotech!
Neotech has GREAT customer service,
exceptional quality products and all products are Made in USA! Wehave no back
orders, same day shipping and we really
care about our customers. I can’t wait for
what the new year brings. We are very active on Facebook, so please visit our
Facebook page at http://www.facebook.com/NeotechHomeHealth. I also encourage you to visit our
web site at www.neotechhomehealth.com to learn more about us and our
products.We are still a
small, family-oriented company that really cares. We strive for excellent
customer service, are happy to send free samples of our products, and most
importantly, and we really care.I look forward to
hearing from many more of you and if there is anything I can do for you, feel
free to email me at judy@neotechproducts.com.
Judy McCrary
Home Healthcare Specialist
NeotechProducts
Inc.
(800-966-0500
Ext 105
Check back next week for our first TRISOMY TESTAMENT!! We will be featuring the testament of a sweet boy living and thriving with FULL trisomy 13..until then Embrace Life One Moment at a Time!!
