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" The doctor
gave us a one in a million shot of a “mild case."
Samuel is our little miracle and I know he is a message of hope for all
those out there who have received an adverse prenatal diagnosis."
~The Mabeus Family
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mabeusfamily@verizon.net
www.samuelsspace.net
(410) 757-5326
Mabeus Family update 7-18-08
My dear Families,
Thank you for all of your wonderful wishes for my little man! It is hard to
believe, that I buried him just 4 months ago. He would
have been 2 years old today! As I reflect on Samuel's life, I think of all
the wonderful things we packed into those 19 months, always cherishing every
minute of everyday! We went everywhere from Disneyworld, water parks, you
name it! Samuel was a true sweety who had the softest skin. It was like a
silk sheet. I have never felt skin like that. He loved to be swung in a
towel like a hammock. He would laugh from the bottom of his belly. He would
do fish kisses, loved to roll, kick his legs, and most of all cuddle with
mama. That was the only word he ever said. I was so proud! Samuel loved the
water, and music, and absolutely loved to jump in his Jumperoo! Even though
he was visually impaired, his vision became his greatest strength. Although
his progress seemed very slow at first, with all of his therapies, he really
did accomplish alot. What takes no effort for a "typical" child, Samuel had
to work very hard for. It makes you really appreciate all those little
things we all take for granted. I was always so proud of him, even for the
simple things like bringing his hands together or putting his finger in his
mouth.
Today was a little hard though, but overall, it was a nice day. We bought
stick balloons and took them to the cemetery. We placed the 5 balloons, in
front of the headstone, along with a number 2 candle. We read a poem and
sang Happy Birthday. We stayed for a while, and then we took the kids to
chuck E cheese. I let them pick where they wanted to celebrate Samuel's
birthday. They had a ball! It was really neat to watch all the kids and my
husband having such a great time. As I watched Adam, who is now, almost 14
months old( my babies were 10 months apart), doing so many things, I
couldn't help but think he was doing everything double for he and his
brother. The babies were like twins, and I know Adam feels like something is
missing, as they laid on the floor together, slept in the same room ,and sat
side by side in their stroller. They always held hands. It was so cute.
Anyway..... We came home and decorated the kitchen with a birthday banner, a
Picture of Samuel from his 1st birthday, a candle with his picture on it, a
number 2 candle, and a DVD of his life. We watched the video, and then got
out the ice cream cake, sang happy birthday, and we all blew out his candle.
I wish he could have been here, but I am very grateful for the time I
was given.
A big thank you to all of you for sharing in his life!
I hold each and every one of you very near and dear to my heart. I am very
blessed to have all of you in my life!
Much love,
Mary Mabeus ( mom to Samuel, my precious gift for 19 months) and the
rest of my crew, Hannah, Caroline, James and Adam
- - -
 Mabeus Family update 5-12-08
(taken from a post on our LWT13 general message board)
Hello my dearest trisomy families!
I am sorry that it has taken me so long to give you all an update. It has
just been a time of much adjustment and settling into our new lives here in
Maryland. First, I would like to send a great big THANK YOU!!!!! To all of
you for your wonderful words and thoughts that you have sent through
e-mails, phone calls, and by signing the guestbook on the funeral home sight
for our beloved Samuel. You and your families are all very close to my heart
and I appreciate your support of our family for the past 2 years, through
the prenatal journey, the living journey, and now as we walk this part of
the journey without our precious boy. You are all truly amazing and I am so
grateful to be part of this trisomy world which I call family!
Welcome to all our new families! I can say, that although this can be an
emotional roller coaster ride at times, it is also the most fulfilling
journey that you will experience in your life. The road is not easy, but the
there is something so incredibly special about these children that you will
find yourself living and loving and pure joy beyond comprehension! Please do
not give up or lose hope. You never know what the possibilities can be!
Happy birthday to all our children with birthdays! Keep the updates coming!
I love to hear how well our kids are doing!
I have wanted to share with all of you the celebration of Samuel's life
through his viewing and funeral, but first, for you to comprehend it all, I
need to back up to the last few months before he died. Things really seemed
to go south when he had his first surgery for g-tube placement in November.
After being hospitalized for 27 days, he finally came home, but continued to
have aspiration and respiratory problems along with his seizures. He was
very sick right before Christmas, and I thought I would lose him then.
However, I prayed for a Christmas miracle, and low and behold, he got
better!
In January, things were going really well and he seemed to be more animated
than ever! Blowing kisses, smiling, and rolling everywhere! However, we
needed to have the fundoplication done, in order to get the reflux under
control to stop the aspirating. We should have had it done with the g-tube.
On January 15, he went back in the hospital for this surgery for another
long stay of 31 days. While he was in there, we consulted with the
pulmonologist, due to his tracheomalacia well, actually it was,
laryngomalacia and a trach was placed for that as well as constant upper
airway congestion. Samuel finally came home February 15. However, after a
few days of being home, he started running a low grade fever of 99-100. I
took him to the doctor twice within the following 2 weeks, but the doctor
could not find anything wrong. It was first dismissed as a virus and I gave
him the ibuprophen and tylenol in between. An antibiotic called bioxin was
started 2 days before he died.
THE DAY BEFORE....
Thursday, February 28th.What a day! The movers had come to load our stuff
into the moving truck. As many of you know, we are a military family and we
were transferring back to our home state to be closer to family. I had a
nurse helping me with Samuel, and all the other kids were running about
making sure that nothing was being left behind. I was a bit nervous, as the
house was supposed to close at 4pm that evening after a nightmare of trying
to sell! The closing went fine and as the movers left, we cleaned, while
trying to load all of Samuel's medical equipment into the 12 passenger van.
Finally, we pulled out of Florida at 8p.m. In my van, were my 3 boys, James,
Samuel, and Adam, and Samuel's nurse. I was driving, so I was fortunate to
get my insurance company to pay for a nurse to travel with us and fly her
back a few days later. My husband was driving in front of me with our 2
daughters, Hannah and Caroline and the 2 cats. After driving for 3 hours, we
finally stopped in Melbourne Florida at 11p.m. At the hotel, things got very
chaotic, as Samuel seemed to be getting a cold. He needed to be suctioned
constantly and was coughing. After suctioning, breathing treatments, and
meds, Samuel finally settled down about midnight. At 3 a.m., my husband was
telling me to get up, as our 5 year old had a stomach bug and you know what
was everywhere! I bathed him and back to bed, with Samuel next to me I went!
THE DAY THAT SAMUEL PASSED AWAY....
Friday, February 29th. With just a few hours of sleep, we awoke to a very
uneventful morning, Thank goodness! Everyone was feeling better. I could not
believe it, as Samuel, who seemed so sick the night before was acting like
his old self. He was making his wonderful sounds, kicking his feet, rolling
and blowing kisses. Not a cough and no secretions. I was thrilled! It was a
bit tough getting everyone ready and getting out of the hotel, but we
finally made it out of there at 11a.m. We drove for a few hours, stopped at
McDonald's for lunch and drove some more. I figured that Samuel was very
tired from the restless night he had the night before, so assumed that was
why he was
sleeping so much.
We had been driving through Georgia for about an hour, when my world would
all come crashing down harder than I ever could have imagined! All of a
sudden, the nurse told me he was burning up and that she was going to take
his temperature. She then told me that if the thermometer was correct, he
was 106. I immediately told her to undress
him, and I cranked the air conditioning up. Before I could even call my
husband to tell him what was happening, and remember, all the while I am
driving while all this was happening, following my husband on interstate 95,
the nurse proceeded to tell me that she didn't like his color. First he was
pale and then he was turning blue!
I immediately told her to give him oxygen, and while she was doing this, I
asked her what he was doing. She said nothing. I asked her if he was
breathing and she said no! She immediately started C.P.R. With the ambo bag
while I called my husband as well as 911. We pulled off at the next exit,
stopped at a BP station, and waited for the
ambulance to get there. They made me stay on the line until they got there.
I was screaming and asking if the trach was occluded. The nurse kept saying
no. I was shaking and in shock and could not bear to look at him, as my
husband was telling me how "blue" he was. When the ambulance got there, they
wisked him out of the van and in to the ambulance. I was shaking and
screaming,"I'm not ready for this!" I then looked over and saw my 2 girls,
standing by my husbands car in hysterics, and I knew I had to comfort them.
They took him to the nearest hospital, which was 30 miles away. As we were
driving, I kept thinking to myself that I hope he would be okay, but all the
while thinking that he had been down too long and I did not want to have to
make a decision over any kind of machines. He had made it this far on his
own, and I prayed that it would continue to be on his terms, not mine.
When I arrived at the hospital, they immediately directed me to a room where
I was met by a chaplain. He kept saying to me that they were still working
on him and that there was still hope. A few minutes later, a doctor and some
of his team came in and explained to me that they did all they could, but
there was no signs of life when the brought him there. The doctor believed
that there was something going on in his little lungs and that once the body
reaches that kind of temperature, sepsis sets in very rapidly. The doctor
began to cry and said he was so sorry and that Samuel looked like a
beautiful baby and how hard this was for him, being a father himself. They
then let me see him, hold him, and love him for the rest of the day.
I did not have an autopsy done, as I did not want my little boy cut open and
examined. I simply felt it would serve no purpose for us. In the state of
Georgia, anyone under the age of 18, is automatically taken for an autopsy,
but thankfully, I had all of his medical records in the van, so they
accepted that. The state of Georgia was so touched by Samuel, that all
expenses from the funeral home there to get him ready to fly to Maryland
were paid for by the state. Everyone in Georgia was wonderful!
THE DAY THEY FLEW HIM HOME TO MARYLAND....
This was a very hard day, as it was Wednesday march the 5th and also my 35th
birthday. I kept thinking of all the years of my birthdays and what I had
done on each one of them. It was this day of this year, that I was at the
funeral home, picking out my baby's casket and making all of the funeral
arrangements. It was a very hard day. It would not have mattered if it was
another day, week or even a year later. It still would have been just as
hard.
THE DAY OF THE VIEWING...
It was Sunday March 9th. Samuel laid in a beautiful white casket that was 3
feet, 6 inches long. It had a brass angel at every corner. He was dressed in
a green and white checkered overall set with safari animals on the bib part
of the overalls. He was covered in a yellow blanket that Liz and Courtney
(both from our trisomy family) had bought for him which had a bear hanging
on a moon with "Samuel Mabeus, a gift from God" embroidered on it. There
were flowers and balloons, a video playing with pictures of Samuel's life on
it and a beautiful hand painted portrait of Samuel hanging in the main
entrance.
Tons of family and friends, therapists from Florida, and even other Trisomy
13 parents in the area came. There was also a Gemma bear and a Katherine
Elizabeth bunny that were placed in the casket with him, as well as a
picture that my 9 year old daughter had made for her brother. It was all so
beautiful for being such a sad event.
THE DAY OF THE FUNERAL.....
Monday, March 10th, was the funeral. I wanted it to be a celebration of his
life, as he really did LIVE!!! I wanted people that had not known him to
know what a dear, sweet, loving child he was, and how he touched everyone
that he had met in his 19 months of life. I had a full band. Drums, guitar
etc. The music was beautiful. Before they
brought him down the isle, YOU RAISE ME UP, by Josh Grobin was played. Then,
in came my husband, his 2 brothers, Ricky Verjano (Samuel's Godfather, and
Katherine Elizabeth's father) and my 5 year old son, James as the pall
bearers ,pushing the casket, and my son with his hand on the end in the
back. Other music played was, TO WHERE YOU ARE ,also by Josh Grobin, ON
EAGLES WINGS, and I CAN ONLY IMAGINE by Mercy Me, were among the many
beautiful songs played. I spoke, as well as his therapists from Florida, Liz
Verjano,(Katherine Elizabeth's mom), and Samuel's nurse. Liz also read words
written by Courtney Holihen (Gemma's mom, who is Samuel's Godmother.)
Everything that everyone said was so touching and unbelievable. I was so
proud of Samuel and all that he had done for so many people. I knew he was
so special, but to hear the things that people said and what he had done for
them was so amazing! We then buried him in the Baltimore National Cemetery.
He was eligible to go there because he was under 18 and a child of military
father. So, that is where my husband and I will go when we are called home.
We will all be together, as we were in this life. It was a beautiful day for
being such a sad event.
LIFE SINCE ............
Well, what can I say? A very large piece of me is gone. I have my moments,
but I am doing okay. The kids and Jimmy are settled into their new life here
in Maryland with school and work. Caroline, my shy one, has become miss
social, while Hannah is playing in the band and has been accepted in the
National Junior Honor society.
I am home with the 2 boys. James will start Kindergarten in the fall. Adam
will be 1 year old on the 23rd of this month. Jimmy likes his job. It's very
busy as they prepare for the Presidential Inauguration. We take flowers to
Samuel's grave and visit every Sunday. The kids make really nice pictures
and vases for the flowers and they feel really good about that. I am proud
of all of them for how they loved their brother in life and continue is
message of hope in his death.
I am comforted by the fact that I loved my precious Samuel with every ounce
of my being and did everything I could do as his mother and caregiver. He
taught me the meaning of unconditional love, as well as to never give up. I
have learned that it is not the things that we can do that make us who we
are. Rather, it is the way in which we do the things that we can do that
matter most. I relished in every "inchstone",enjoyed everyday, and learned
that the little things in life are what matter the most. I was very blessed
to have been on this journey, and although I wish I could
have had him longer, I am very grateful to have been given a beautiful 19
months. I could never have imagined life without him. For he was, a once in
a lifetime little soul, and that it was privilege and an honor to be his
mother and to have him for a son. He touched so many people and did so much
in his 19 months of life.
If faced with his same situation, I would do it all over again, even if I
knew this would be the end result, for the joy and happiness I received from
my little guy, I never would have known. In my heart, I know that the t-13
mosaicism was in there somewhere. The deletion on the 5th chromosome, was
just an extra added ingredient in the best recipe I ever received! I will
continue to be a part of this trisomy family and continue my son's work. I
will be his voice of hope, support, and love that he gave so much of,
through truly, LIVING WITH TRISOMY 13 ! Please know that I think of you all
daily. May you find the peace and comfort on this fulfilling journey, and
the strength to carry you on
the days that are not easy. Remember, whatever part of the journey you are
on, we are all here for one another.
Much love to you and your families!
Mary Mabeus (mom to my fabulous five, Hannah, Caroline, James, Samuel
(our precious gift for 19 months) and Adam
- - -
Samuel went home to the arms of our Lord on Friday, February 29th, 2008
Singleton Funeral Home has setup
a visitation page on their web site.
 Update
7-18-07
Celebrating ONE year ~ Happy 1st Birthday Samuel
Hello my dearest trisomy families!
Samuel has reached his biggest milestone yet! Yesterday, we celebrated his
first birthday!!!!!!!!!!!!!!!!!! As I reflect on this year, I am filled with
many emotions. What a year! There have been times of sadness, joy,
struggles, challenges and lots of LOVE!!!!!!!!!
We began this journey just as many of you have as a prenatal diagnosis
family. I often think back to that fateful day when we received the
diagnosis. How our world seemed completely shattered. At the same time we
received our diagnosis, my dad, who lived with us for 4 and a half years,
was diagnosed with lymphoma. I just couldn't believe all this was happening
at the same time. Well we've come very far since then and how we've grown
spiritually and emotionally.
Unfortunately, my dad passed away in October, but not before he made his
peace with God through Samuel. You see, my dad told me before he died and
while I was still pregnant with Samuel that he made a deal with God. He said
that if God needed to take one of them, then to take my dad. He said he had
lived his life and wanted Samuel to have that same chance. After Samuel was
born, my dad witnessed to so many of the hospice people who came to the
house about trisomy 13 and how children do survive. It was amazing! So you
see, that was Samuel's gift to my dad, to bring him closer to God!
Any way, as many of you know, after Samuel was born, no traces of t-13 could
be found in either his blood or skin. So after countless talks with many
geneticists, we were dismissed and the t-13 diagnosis was dismissed and we
were sent home with now a "normal" baby. However, I never let my guard down,
always staying very close to this site. By 6 months old, when nothing was
happening, we got back on the ball and began therapy and starting seeing the
many specialist we see today. I don't think there is any doubt in any ones
mind anymore that the t-13 has effected Samuel, but it doesn't matter any
more. We love him and only want to help him be the best he can be! We are
just so thrilled that he has made it this far! I never knew if I would even
bring him home from the hospital, let alone have him this long! We love him
so much and are so proud of all of his "inchstones." He rolls, both ways,
is gaining better head control, and smiles with his eyes! He is reaching for
toys and tracking and just starting to hold a toy for a few seconds. So he's
come along way and we are hopeful that he will continue to progress.
Yesterday
for his birthday, we went to lunch, then we took him for pictures. What a
riot! I told the lady, "look, he is special needs, he can't sit up, can't
hold his head, doesn't smile like most babies do and doesn't tolerate much.
We have to do this fast and as long as I get a pleasant look on his face,
then I'm happy." The girl was sort of dumbfounded, but very nice and worked
very well with us and had alot of patience. When we got home, we decorated,
sang, and ate chocolate cake. I have the cutest pictures of Samuel that I
have sent to Therese, so hopefully you all will see them soon.
I am so grateful for this group. It
truly has been my lifeline for the past year. I am so thankful for the
friendships and the many wonderful people in my life through this
experience. I am so blessed to have you all in our lives and although I
would never wish any one else to have to go through this, I can't imagine
what life would have been like without going through this, as I have
received so many gifts through my precious Samuel!
The gift of patience, understanding, acceptance, friendship, and
selflessness are among the many gifts that I have personally received from
having a special needs child.
When these doctors say "incompatible with life', I'd like to know who's
life they are talking about, as Samuel is very compatible with my life!
We do not know what the future holds. We only know that we must take one day
at a time and to make every day count! We are just so happy and thankful
that Samuel made it to 1 year old!!!!! We'll see what this next year brings
and hopefully, this year coming will be less eventful. I'm not super woman
you know!!!! Keep your eyes peeled for Samuel's birthday pictures!
Love, prayers and peace to you all!
Mary Mabeus mom to Hannah, Caroline, James, Samuel t-13 mosaic (the big
1 year old!!!!!) and Adam
- - -
Update 2-3-07
After Samuel was born, we had both his blood and skin tested for the trisomy
13. Both tests came back normal. At the time, we were dismissed from the
geneticist and the doctors and basically told our child was “normal”
However, as time went by, we noticed some things with him that did not seem
quite right. My first concern was his vision. He never seemed to track
anything, nor respond to his name. Also, I was concerned about his
development, as he had truly never met any milestones by 5 months old.
Finally, at his 6 month check-up. I expressed my concerns to our
pediatrition. Since the trisomy 13 was ruled out, there were many questions
as to why this was happening.
The first specialist we were sent to was on Monday, January22,2007. It was
the opthomologist. I was very nervous because I knew this was a big
appointment and if he couldn’t see, then just maybe this eye doctor would
give us the answers we were looking for. After dilating his pupils and
doing a full exam, the doctor proceeded to tell me that structurally,
Samuel’s eyes were perfect. He continued by telling me that the bigger
problem was coming from the brain. Apparently, the eyes can only see what
the brain is telling them to see and if the brain is not processing or
functioning normal, than you lose the sight. Samuel has been diagnosed with
cortical visual impairment. So that was the first reality call.
Then on Tuesday, January 23, 2007, I took Samuel for a physical therapy
evaluation. His development is 0-2 months level. He is almost 7 months old,
so I knew then, that I needed help right away. Samuel is now in physical
therapy 2 times a week, and through a wonderful organization that works with
blind babies, he gets a visual teacher in our home 1 hour each week.
As far as any upcoming appointments go, he will be assessed through the
state this Tuesday and see the Neurologist on February 13, I will keep
everyone updated as things progress.
So
to some it up, he is developmentally delayed and visually impaired. Is it
the trisomy 13? We do not know at this present moment, but I believe that it
definitely is . Further genetic testing will have to be done down the road.
For now, I am taking it one day at a time. I still believe he is a miracle.
I believe all these children are, nomatter what the outcome. I know Samuel’s
story has touched many people, and I hope to continue to be able to give
support and hope to families in need. Samuel is truly our little blessing
and has changed many lives. We continue to shower him with love and many
kisses as we face this new chapter in our lives.
I know this is a most unique story that has baffled even the most medical
related people. I’m sure it has baffled all of you. So you can only imagine
what my family has struggled with, having truly been on every side of the
coin and back around again. I thank each and every one of you for all the
support you give and for sharing in every aspect of Samuel’s journey. I know
that you will be with us on this next part of the journey and bend in this
road and I thank you for that from the bottom of my heart.
God Bless you and your families.
Mary Mabeus (mom to Samuel trisomy 13 mosaic)
- - - -
Tuesday, October 2, 2006
Yes! Samuel’s skin test came back negative for Trisomy 13!!! The doctor
mentioned the possibility of the theory of cellular rescue where somehow the
good cells take over the bad; but, in the end said “or you must pray a
lot.”
Update 9-27-06
Dearest Trisomy Families,
Just wanted to let you all know that Samuel's website has been updated with
new pictures and his latest update. I don't want to spoil it for you, as I
want you to see for yourselves. However, I will tell you that he was
baptized at church on Sunday. We shared this beautiful occasion with 2 other
trisomy families. Gemma Holihen's family as well as Catherine Verjano's
family. Even though the 2 little angels are no longer here with us, the real
miracle is how they brought all of our families together.
These 2 families have been by our side the entire journey. They mean so much
to our family. By the way, you will see many picture of these families on
Samuel's site, as we chose one parent from each family to represent our son
as Godparents. Through this site, our family has grown. God is so good! All
of you are in our thoughts and prayers each and every day. May God continue
to bless your and your families
We are awaiting the skin test results which should be back sometime in late
October. His blood was normal, which means that his organs are not affected.
The blood and organs developing go hand in hand, However, If they find the
trisomy in his skin, then chances are he will be affected developmentally
since the skin and brain tissue form at the same time.
You know that no matter which way it goes, we are fine with it. We are
learning so much as we go.
Thanks,
Mary Mabeus
- - -
My trisomy journey began on March 13 2006. I was called to come into the
office to discuss the results of my A.F.P. that I had at 16 weeks two weeks
prior on March 1st. They explained to me that I had tested positive for
trisomy 18. They tested it twice, recalculating my due date for they thought
that maybe I had been tested too early. Both results were positive, so I
found myself two days later at the perinatologist office waiting to receive
a level two ultrasound and amnio. they performed the ultrasound first. The
doctor , after looking at the baby for 45 minutes, said that the baby looked
just fine and assured me that they usually always find markers on ultrasound
with those babies.
He then performed the amnio anyway and told me to go home and relax. I had
two weeks of elation. Then two weeks later, on March 29th, my world as I had
known it would change forever. I received a phone call from my doctors
office to come in right away because they had my test results. When I got in
there, my doctor told me the amnio was also abnormal, not for trisomy 18,
but for trisomy 13. I was in pure shock! I told the doctor that the
ultrasound was normal and he said that there are just some things that you
just cannot see. He gave me three choices, adoption, abortion, or to keep
the baby in which our lives would change forever. We were given two days to
make the decision.
Two days later, on March 31st, My husband and I found ourselves in the
doctors office hearing the worst things I could possibly ever hear in all my
life. Unlike most of the trisomy families, we did not hear the typical
"incompatible with life" or "no hope". Those things would have been hard
enough to hear. What we heard, was that we already had three children and
with an abortion, we could move on and forget and one day have more
children. He also said that if our son was in a car accident and all of his
bones were broken, what choice do you think you would make? Do you really
want to change diapers for the rest of your life? This is not a baby, this
is a fetus. Why would you put your other children through this? Multiple
abnormalities and a one in a million shot of a mild case. There was much
more, but you get the idea. He then put us on the phone with an abortion
clinic right then and there. I can just remember being in a fog and feeling
very paralyzed.
Well, we chose to continue the pregnancy in spite of everything. I changed
doctors immediately and through a lot of tears and soul searching, and
finding support from the trisomy group, (Therese Ann, Bess, and Liz) and
through the strength of the Lord, continued on this difficult journey. By
the way, my doctor never told us that it was Mosaic trisomy 13. we looked at
our genetic papers and did our own research.
During the pregnancy, No abnormalities were ever found, not on ultrasound
nor by the cardiologist. It was a bittersweet pregnancy that at times I
could really enjoy and some days I wished I was not pregnant at all! It was
such an emotional roller coaster ride to say the least.
On July 17th, at 34 weeks, due to a high amniotic fluid level, Samuel
Charles Mabeus entered the world at 12:58 p.m. weighing in at 4 lbs. 15 oz.
and 17 inches long. He was immediately taken to the N.I.C.U. due to his
breathing. He spent the next few days on a ventilator, feeding tubes and
bili light. A few days later, he still had a few scares of heart rate
dropping along with apnea.
Then, on Wednesday July 26, we got some unexpected news. Samuel’s karotype
came back normal! He has no detectable traces of Trisomy 13 in his blood! On
Tuesday, Oct 2, this was confirmed by skin test. Again, NO TRACE OF TRISOMY
13 HAS YET BEEN FOUND IN HIS BODY!!! The doctor gave us a one in a million
shot of a “mild case”. Samuel is living proof that miracles can and do
happen and as accurate as prenatal testing can be errors can and do happen.
More importantly, he is living proof of the healing power of prayer and
greatness of our God! Even if Samuel ever develops problems now or down the
road from the trisomy that was once in his body, or if it is ever found in
his little body, he will always be our miracle! He is living and thriving
and a blessing to all who know him!
Samuel is our little miracle and I know he is a message of hope for all
those out there who have received an adverse prenatal diagnosis. Please know
that Samuel may have more medical or health issues than the average child
and we will not know the affects of the trisomy that was once in his body
for quite some time or if it is still hiding in there somewhere. Despite any
challenges that may or may not lie ahead, carrying Samuel to term was the
best decision we have ever made and Samuel is nothing less than a gift and a
miracle. We will keep everyone up to date on his progress. May God continue
to bless all of you and thank you for all your support and prayers.
The Mabeus Family Jim, Mary, Hannah, Caroline, James and Samuel
(unconfirmed to this date but detected by amnio: Trisomy 13 Mosaic)
------- Submitted 7-25-06
Samuel is doing wonderful. He is 4lbs. 91/2 oz. receiving oxygen, although
mostly breathing his own air. Working with the speech therapist on his
feedings once a day. He is now receiving 25 mls of formula through the
bottle and the other 20 mls through the ng tube once a day. All of the other
feedings are strictly tube feedings. He is maintaining his own body temp.
and is very alert. We hope to bring him home as soon as we can get his
feeding issues straightened out.
May God bless you and your family.
Mary
Jim and Mary Mabeus
Parents of Samuel Mabeus
Born: July 17th,2006
(410) 432-6171
Miramar, Florida
mabeusfamily@verizon.net
http://www.samuelsspace.com
mosaic trisomy 13
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