"I used to ask why did
God let Dalton be born this way? In our humanness we will never
understand the exact precise reasoning but I do know that it is
wonderful and good. For it has been a life changing experience, a
labor of love as well as a once in a life time greatest love affair
between a mother and child anyone could possibly hope to experience
in this lifetime."
11-4-08
I will forever be grateful to have had 4 years and 10 months with my little
borrowed angel. God called him home and now he is in Heaven with all the
other children running and playing. I bet he is still running laps! One day
we will meet again and I look towards the moment but until then Jesus will
just watch over him till I get there.
I never wanted to change a thing about
Dalton. Our minister, friend, who married me and Scott gave Dalton's eulogy.
It was beautiful. He noted how he first met Dalton noticing how he was a
cute little boy but what made him even cuter was his glasses and hearing
aids.
Yes, he was very extra special and anyone who laid eyes on him knew
they were seeing a borrowed angel, one whose name was already in the book
and way paved. Psalm 139:13-18, "For you created my inmost being; you knit
me together in my mother's womb. I praise You because I am fearfully and
wonderfully made"
This scripture gives me comfort on many levels.
I used to ask why did God
let Dalton be born this way? In our humanness we will never understand the
exact precise reasoning but I do know that it is wonderful and good. For it
has been a life changing experience, a labor of love as well as a once in a
life time greatest love affair between a mother and child anyone could
possibly hope to experience in this lifetime.
I do not know how Dalton died. It really does not matter as much as such
that he is in a better place with Jesus. He is not coming back and my goal
and hope is to see him again in Heaven to hold him, talk to him, hear what
he has to say. I do know that he died quickly and did not suffer much if at
all. What more could I have asked for than to have my prayer once again
answered. I have been so blessed in my life for many obvious reasons and
some not so obvious but will forever be grateful to GOD for giving me the
best gift of all, my own personal angel to love here on this earth. Painful
to return yet Dalton is and was a witness of faith to many people who knew
him. All these special children are a tremendous blessing and witness to
faith for all.
Daphne Martini-Elliott,
Dalton's Mom
10-25-08
Hello to all,
This is difficult to write and guess it's my turn to announce my son to be
in the treasured memory album. Dalton passed away yesterday morning around
1030 a.m. I do not believe he suffered much if at all. His cause of death is
uncertain to us and to the doctors. Dalton was at home and finished physical
therapy and had been smiling and his therapist said he worked hard and had a
good session this day. About 3o minutes to an hour after therapy he started
satting (O2) low. He then began to turn blue around his lips. Nick and I
were at work. The nurse at home with Dalton dialed 911. When the paramedics
arrived Dalton did not have a heartbeat and was not breathing. The nurse was
administering cpr. The EMT's provided an airway and oxygenated him in the
ambulance. They got his heart beating again but kept losing it. When Dalton
arrived at the ER the doctor said his core body temperature was already
94.0. She said she could tell he looked like he had been through a lot.(
What does that mean????) Dalton hasn’t been hospitalized in 2 years almost
and was doing okay. By the time Nick got to the hospital first, they told
him Dalton was DOA. The doctor said to me that Dalton had already out lived
everyone's expectations and she doubted if she could have revived him. I am
having some difficulty with this as she also told me she took an X-ray. Did
she do this before he died or after? Was he truly DOA? None of this matters
now as it will not bring my baby boy back. The X-ray revealed a lot of air
and gas in his abdomen and intestines but did not appear to have any
impaction or malrotation of bowels. He did not aspirate as his lungs looked
good. She said she would fill out his death certificate the best she could
although she thought he passed
of natural causes.
I do not know how I feel about all this at present or
what I will try to further understand in the future. I just know I am
reminiscing of all the wonderful things Dalton is about and does. We are
strolling memory lane and even though we already miss him soooo terribly,
indescribably much, we know he is in a better place. He is with God and all
the other children.
We will rely on our faith to get us through this. Dalton
is at Laureland funeral home and park in Ft Worth, TX. I have 2 plots there
near my grandparents and great-grandparents buried. I do not know about
funeral arrangements as one of my sons is coming in from Iraq. He is in the
Marines and I will know soon when he may arrive. I hope in time for the
funeral. I will delay the date as I can and as appropriately for him to come
and for Dalton as I possibly can.
God Bless you all for everything you do for all our kiddos and more.
I will write more later.
Daphne Martini Elliott
Daltons mom full T-13
February
25, 2008
Dalton and Juliette play a little more together now. Dalton seems to be
interested when Juliette takes his toys and of course he wants to play with
all of hers too! These photos were taken Valentines weekend.
Dalton has learned to sit independently just before Christmas. We can sit
him in the floor to play and he is still sitting an hour later. He is trying
to learn to pull to a sit position from crawl and can do it with some slight
nudging. I hope he can do it someday. Dalton has been a little challenged
with seizures lately. His seiz's were increasing so we increased the
phenobarbitol and he became a zombie. After three weeks, he still didn't
smile and he could not sit independently but for 5 mins, if he even wanted
to! So we backed off the phenobarb and he is his old self again. He recently
had his implant turned up also in hopes this would help.
Dalton's Great grandpa passed away last night. He was 88 yrs old. He was a
mountain of a man!! Just a beautiful man, inside and out. He had a lot of
pics of Dalton around his house. We visited when we could but he thought it
made him sad to be around Dalton too much so close to the end we didn't
visit as much but he loved Dalton very much and had his pictures everywhere.
Dalton is also staying with his Dad until July to give me a break. We have
had a few mishaps with Dalton not getting his meds but overall Dad doing an
okay job. This is a trial run and if I had to say today whether or not this
is a permanent situation to do joint custody splitting the year, I would
have to say absolutely not but I agreed to give his Dad a chance. So, I will
hold to the bargain. There have been two instances I have thought about
changing my mind but haven't for now. Any more mishaps, excuses, blaming
games, etc., and Dalton not receiving care he would get here in his own home
and he will come back to me sooner than July. Dalton has a wonderful nurse
who takes care of him in Austin, where his Dad lives. It's my turn to be on
the every other weekend or once a month visitation.
It's tough but I thought a good idea for me and his Dad to switch places to
better understand one another and to enable us to work better together,
especially on visitation. Plus his Dad is motivated to take good care of him
as I gave him back all his child support!! But this does not exclude reason
for good care for Dalton, I was just being fair. If in the event I don't
think Dalton is being cared for as well as I can, I will have my attorney
draft another modification and I will bring Dalton home. I have enough to
bring him home already but trying to give Dad a fair shot at it. Please
anyone feel free to draft me a line if you think I have not been wise. I
would love to hear your opinion.
Dalton has a new baby sister!! Her name is Juliette. They like to swing
together as well as nap together. I cant wait for them to be play buddies
but Juliette will need to grow a little first.
Dalton's two oldest brothers are both Marines
and stationed in San Diego, Ca. Dalton's big sister, Chelsye is busy taking
college classes this summer for college credit even though she will be a
senior in high school this yr.
Dalton has some new additional siblings who have come to live with us
recently. Tyler-16, Hailey-13, Brooke-9, and Cade-8. The children are all
adjusting to living together and seem to enjoy each other so far! We keep
our fingers crossed and pray it continues to be blissful!!!!
Dalton had the VNS implant surgery several months ago and it seems to work
well. He is still on his seizure meds but the doctors are impressed that he
is on minimal doses for his body weight. Thanks to the implant!! He
continues to combat crawl and walks in his rifton walker outside 2x's a day.
His latest accomplishment and work has been to
learn feeding himself with gerber dippers and recently a spoon. He will also
hold a pb&j sandwich cut into quarters and eat this without having to puree
it! He does eat some foods mechanical soft and doesn't have to have it all
pureed. He gets plenty of milk to drink and I just recently started adding
vit D to his diet for his bones.
I hope everyone enjoys the pictures from Easter this year and then more
recent photos obviously.
Hugs,
Daphne and Dalton
- - -
Update
10-31-06
Hello, to everyone. I wanted to update Dalton's site. Dalton is doing well
and hasn't been hospitalized in a year now. He continues to battle his
seizure disorder. He is scheduled for a EEG (6hr) in Dec. and then from
there the epilepsy committee will decide what type of treatment he will
need. Either back on the ketogenic diet or VNS implant.
He has his evaluation for his ppcd class at the public school in Nov. He
will begin school after the holiday break in Jan. 07.
Here are some photos of Dalton during his pumpkin carving with me and his
sister, Chelsye and brother, Garrett. Tonight we are going trick or
treating! Dalton is going as Chicken Little!!
HAPPY HALLOWEEN!!
Dalton and Daphne
Update: August 1, 2008
Dalton continues to do well. He still battles his seizure disorder, reflux,
and constipation at times! He is quite the toddler these days whom is mostly
happy yet opinionated and if he doesn't like something you will know about
it! In the spring Dalton had a chance to attend class at a private
school-Kinder Frogs, located on TCU campus (Texas Christian University) This
is a school for predominantly Down's Syndrome children but upon evaluation
they accept children with similar learning disabilities. He got accepted!!!
They feel he has a lot of learning potential and I am not biased at all, of
course!! He will attend there soon and if not (waiting list) he will attend
public school in Jan. of '07.
Dalton is shared between two homes now. Dad has visitation and does his best
to get him on a regular basis. Dalton lives with me and his 2 older siblings
who spoil him! Dalton is the boss around here for the most part. The
pictures of him in the blue bonnets and standing at duck feeder are at
Easter '06 and the school pics (TCU) are in May. The Marine holding Dalton
in this pic is his oldest brother stationed in Calif. The pic is also of
Travis wedding as Dalton was the ring barer(JUly'06)The most recent one is
the gait trainer pic taken in July here at home.
Please keep a friend of mine, Melissa and her husband and family in your
prayers as she is 36 weeks pregnant with a little boy she named Jonathon
Ryan he will be here soon! He has been diagnosed with Trisomy 13. They live
in Arlington, Texas.
Have a child living with Trisomy 13? We
would love to add your child to our Album. Click here to send us
their information.
(Please note in the subject area if this is a Trisomy
13 photo as I do not open attachments unless I am aware of the sender.)
Living with Trisomy 13 Focused on prayerful support and gifts of love
to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA 92649
If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy
13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional
familiar with your specific condition. The personal journeys of any parents on
this site are only their opinions and their own journey with having a Trisomy 13
child. You should consult with your own physician or other medical professional
regarding the opinions or recommendations expressed within these pages as to
your own child's symptoms and medical condition.
Fort Worth, Texas (TX) - full trisomy13, 47xy+13
February
25, 2008
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