Born: October 4, 2004
Berryville, Virginia (VA) -
Trisomy 13 Mosaic
February 19, 2009
Stephen will be 4 ½ years old in April
of this year. He continues to do very well. Stephen is right about 40 lbs
and is very active.
He loves to run around and wrestling with his older brothers
and Dad. He also loves to play outside and water the plants….as well as his
brothers and sisters! Stephen continues to have speech therapy 2-3X/week –
both at the local public school and privately. His speech is his biggest
delay area – Stephen is really working hard on T, D, N and F sounds. Stephen
would still prefer to speak in 1-word “sentences” but we prompt him to say
He likes to “cuss” us out with the words “erst” and “emu” -
we’re not really sure what they mean but it’s definitely not good! He
understands everything that we tell him and he follows conversation at the
dinner table – Stephen just has difficulty putting his thoughts into words.
Physically Stephen is doing very well. His fine and gross
motor skills are improving. Developmentally, he’s probably at about 3 yrs
old – in some cases he’s actually beyond this but his delay in speech makes
it seem as if he’s further behind. He was very much looking forward to a
baby in the household for the past several months - Stephen carried around
his sister’s big baby dolls and was very sweet with them. Elizabeth and I
had baby Benjamin several weeks ago on January 24th and Stephen has really
course, he’s just beginning to realize that he moves to chop-meat status now
that the baby is here! – Just kidding! Stephen is moving along in potty
training – he generally goes 1X/day on the potty in the morning after
breakfast – and several times in sundry other places – generally in his
diaper . After he goes, he stands up and we all have to applaud – he points
and gives the evil eye to anyone that doesn’t clap (with an occasional
“erst” or “emu”)!
It was easy to tell that Stephen was ready
for the Big Boy bed earlier this year when Liz came in and saw him holding
one of the crib rails broken off and in his hand! A couple of minutes later
she came in and saw him with one leg almost totally over the rail! Stephen
fits right into the Comparetto family – his first 3-word sentence was “Watch
Moe daddy!” – that is, Moe of the gifted and erudite family - the Three
Stooges! Some words that describe Stephen include cute, lovable, squeezable,
tyrant, observant, loud, repetitive, and adorable!
- - -
Stephen will be turning 3 years old on October 5th. He weighs about 30 lbs
and is 37 inches tall. Physically, Stephen is doing great. There are no
problems to report. He will need to get his nose “fixed” at about 5-6 years
of age by the plastic surgeon that repaired his cleft lip and palate.
Stephen need’s to be old enough to make sure that he doesn’t hit his nose
during the recovery period since the doctor says it’s very fragile for the
first week or so. Then, at about 9-10 years of age, the plastic surgeon will
build up his upper bridge and close up the small hole that is left from his
From a teeth standpoint, Stephen’s a net -2! He’s missing three on top but
has one extra one on the bottom! All baby teeth. He’s able to walk up stairs
very well and also walks down stairs – but, he’s not as steady and we’re
always a little nervous about it. Recently, we found him going upstairs and
coming back down looking for Elizabeth with a Bob the Builder DVD in his
hand! He did it fine but we still generally hold his hand coming downstairs
We had Stephen participating in the local Parent Infant Education (PIE)
program in Virginia, beginning when he was about one year old. Stephen had
physical therapy and speech therapy – each about twice/month. The physical
therapy was probably more beneficial for us to get an idea of what
activities to do with Stephen to enhance his progress. The speech therapy
for Stephen didn’t seem to do very much at all. We stopped participation in
the PIE program in the Spring of this year and began private speech therapy
for Stephen that lasted through the summer. We were very pleased with this
particular speech therapist – Stephen has progressed in signing – he can put
together simple sentences requesting things when prompted. Example: He can
sign “I want toast please” and things like that. He also tries to say the
words while he is signing and, in some cases, you can understand the words.
Stephen began speech therapy with the local public school system in the
beginning of September – in Virginia, at 3 years of age you transfer from
PIE to the public school system and Stephen will be 3 yrs old next month. He
will be taking speech therapy ½ hour once/week.
Developmentally, Stephen is doing very well. Overall, he’s probably at a
developmental level of about 25-26 months at a physical age of 35 months.
The area in which he is the weakest is speech. Stephen can understand all
that we tell him; however, he cannot form the words to speak with us. Our
geneticist has diagnosed him with speech dyspraxia and we will be focusing
on this with the new speech therapist.
gross and fine motor skills are pretty good, he’s walking fine, he can run
(albeit a bit awkward but, we were told recently that our whole family is
awkward!), he goes up stairs well and down stairs a bit “wobbly”. He’s messy
when eating – he can use his fork but it’s easier for him to use his hands!
Stephen loves to watch Bob the Builder, and a host of other shows involving
trucks, construction equipment, firemen, etc. He especially loves to watch
the three stooges!
Stephen loves to play the piano with Gary – he also plays by himself. He can
often be seen sitting at the piano and playing while “reading” the music. He
will get the music out, open it up, and place it in front of him – it is,
however, upside down occasionally :-)
Well, that’s about it. Stephen continues to be a wonderful blessing to our
whole family. I’m hoping to update our home page in the next couple of weeks
with new pictures of Stephen and the rest of the family. The URL is
Gary (and Elizabeth)
- - - -
The following is an update on Stephen that Elizabeth put together for his
Geneticist, Dr. Rosenbaum. I thought it would be a good opportunity to send
it out to others as well. Also, we've updated our home page with new
pictures of Stephen and the rest of the family. The URL is
http://www.user.shentel.net/garycomp/. Some of the pictures are a
little blurry - I have to work on that :-)
Cognitive: Stephen was evaluated at 27 months old and was assessed at ~21
months with some gaps. He can build a 5 block tower and name 3 objects. He
can follow 2-step instructions and points to many objects in books
correctly. He also can retrieve many items when asked. He is extremely
Speech/Language: Stephen tries to say several words. He makes 2-syllable
sounds for 2-syllable words. Stephen can sign several words. Most of his
speech includes words/signs for food/drink, vehicles, animals, and family
members. He understands so much more That he can express. We have had a
speech therapist come 2X/month for over a year; however, we see almost no
progress in speech - this is through the state Infant/Toddler program. We
recently began therapy 2X/week with an Infant Educator and she is a blessing
to us - her name is Ellen and she has had a hearing disability from
childhood. She is fluent in sign language and is teaching signing to Stephen
- he gets along great with her!
Auditory: Even with tubes, Stephen had 5 ear infections last year (2006).
His ears often have fluid and the right ear is infected most often. Because
of the infections and fluid build up, it is very difficult to get an
accurate assessment of his hearing. So far, the tests seem to indicate a
high-frequency loss only (3000-4000 Hz). The low and middle frequencies seem
to be fine.
Motor: Stephen started walking solo on July 4, 2006 at 21 months old. He
runs now - a little wobbly! He can stand on tiptoes, goes up the stairs very
fast on hands and feet and can stand going upstairs if holding our hand. He
trips and falls occasionally (We think this may Be due to an impairment in
his directly beneath his eyes. Stephen can sit on a toddler bike and push it
frontwards and backwards with his feet. He has not had regular physical
therapy since July 2006. The therapist has visited Stephen twice since then
to assess whether or not Stephen requires inserts. So far, he does not wear
inserts and she has recommended that we wait another 6 months or so to see
how things progress.
Fine Motor: Stephen can turn pages in a book, scribble with a crayon/pen,
pick up tiny objects and put the in small spaces.
He loves to be outside - likes cars, trucks, animals, and Esther's baby doll
stroller! Pushes everything around the house - cleans up after himself a lot
- tries to find the beat in everything - bops his head up and down - the
other day he was jamming to a march during the boys basketball game! Still
spits raspberries at us when displeased with something - not sleeping in his
own crib very well - translated: the three of us are doing a lot of
We are constantly amazed at what the Good Lord has done and continues to do
with Stephen. When Elizabeth and I think back about what it was Like during
the first year of his life, it is hard to believe that our little boy went
through so much. He is doing so well now. Stephen is such a joy to all of us
and quite a little stinker sometimes! We are so thankful to have Stephen
Gary (and Elizabeth)
The Comparetto Family of Berryville, Virginia Web Site
It's been a long time since the last Stephen update. Stephen is continuing
to do well, praise God!
He turned 16 months old today. He is a little over 20 pounds and takes all
of this food orally. He's eating a variety of foods including number three
baby foods, yogurt, and different parts of the regular dinner meal cut into
small pieces. Stephen especially enjoys biter biscuits, graham crackers,
bananas, cookies and ice cream!
Lord willing, with the repair of his cleft palate last August, Stephen will
not need any further surgeries for some time -- probably not until about
five years old when he will have surgery to fix is nose. A very small hole
still exists in his palate, but it doesn't seem to be affecting either his
eating or speaking. It is possible that we may have Stephen's G-tube removed
sometime this spring or summer. We will be meeting with the "G-tube Lady" at
Children's Hospital in Washington, DC to discuss this in the next several
Recently, Stephen has been our resident “tyrant-in-training”! His main form
of communication is blowing wet raspberries at us to let us know that he’s
not happy with something! like taking cough medicine – Liz
knows this to be the case since she had that sweet smell all over her face
for a week recently! Stephen’s speech therapist was excited that he was able
to do this -- of course she doesn't sit next to him at the
can sit up by himself now but will eventually loose his balance – starting
to get protective reflexes when he falls but often it’s face first into the
carpet! Stephen recently started to crawl! Right now, he can go a good five
or six steps without stopping and then gets a little tired and has to rest.
It has been a joy to see him crawl! He also likes to stand up at the couch
but we have to make sure someone’s there to catch him when he starts heading
Stephen is very interactive with the other children and also enjoys playing
by himself -- he especially enjoys the little tykes farm that Elizabeth got
for him. He loves to make the sounds and move the people and animals around.
Stephen is going out of order with his teeth – 1st tooth front bottom, then
top 1-yr molars, then 2nd tooth bottom front. Babbles with mostly the
g-sound with some b’s, m’s, l’s, k’s and p’s thrown in for variety!
Loves to fall asleep on the chest of his brothers Mikey and Josh, having his
sissy Rachel carry him everywhere, and banging on the piano, pie pans, or
really anything. Likes to listen to music and bops to the
beat! Recently moved out of our bedroom and into the nursery – alright,
actually I banished him from the bedroom! Still, but very infrequently,
holds his breath but there have been no major episodes for quite some time –
we’re hoping it is a thing of the past :-)
Some words that describe Stephen – cute, cantankerous, delightful,
demanding, euphoric, exhausting, you sort of get the idea :-)
Elizabeth and I are so pleased for how well Stephen is doing. When we look
back at the time when we brought Stephen home with us 16 months ago, we were
given such little hope for his survival. But, thanks to God, Stephen is
doing great now!
Elizabeth and I want to thank all of you for your continued thoughts and
prayers for our little Stephen – we really appreciate them.
Gary (and Elizabeth) parents of Daniel (16), Michael (15), Joshua (12),
Rachel (10), John (8), Nathan (7), Esther (4) and Stephen (1) (T13
Mosaic born 10/5/04)
Today is Stephen’s 1 yr birthday and I thought I’d send out
First, let me say what a blessing Stephen has been to our family and how
thankful we are to the Good Lord for giving us such a gift. When I look back
over the year and what Stephen and all of us have gone through, I would have
thought that my memories of the past year would have been of the difficult
and trying times, especially during the first 6 months, but I can honestly
say that my recollections of the last year are not that way at all. I can
certainly recall times when I was afraid, angry, frustrated, tired, etc.,
but they don’t dominate my memories, not at all. Rather, it seems as if it
wasn’t really that bad – not that I enjoy going through difficult times, I
don’t, but it’s as though my memories of the tough times over the past year
are not as fresh or intense as my memories of the joyful times – like when I
see how the children unconditionally show their love to Stephen, when
Elizabeth saved Stephen by giving him CPR when he was only a couple of
months old and he had stopped breathing for several minutes, when the doctor
– I don’t even remember his name – was able to get Stephen’s heart into
rhythm at 5 AM after we were called into the hospital a couple of hours
before that with no hope for his survival, when Stephen smiles at me
when we’re playing, and there are many, many more. It’s as if these memories
are in color while the memories of the difficult times are only in black and
white. I’m so thankful to the Good Lord for Stephen and for all of these
Stephen is really doing great. His cleft palate surgery was 31 Aug and he
appears to be doing very well. Stephen’s definitely doing better with baby
food – he’s regularly eating from 1 to 2 jars of baby food a day along with
one or two biter biscuits – he loves them. It turns out that it’s not the
easiest thing to clearly see what a baby’s palate looks like but the Doctor
told us it looked very good at his first post-op checkup a week after the
surgery - our final post-op checkup is
on Nov 14th and we’re hoping to get another positive result.
Stephen’s scheduled to have his 1-yr checkup with Dr. Rosenbaum, his
geneticist, on Nov 7th – we’re really looking forward to this. Dr. Rosenbaum
has been wonderful for Stephen and us right from the beginning and I know
he’ll be happy to see him.
Currently, Stephen can get up on all fours and loves to roll over. His legs
and arms are very strong but his torso is still not strong enough for him to
sit up by himself. He seems to be making more sounds since the palate was
repaired – some M’s and occasional B’s. Stephen is getting all of his
nourishment orally – he’s gets his formula using the Haberman bottle and
he’s enjoying the baby food. For the past several weeks, we’ve only used the
G-tube for medications. He keeps all of his food down and he hasn’t had a
breath holding episode in a number of months. Stephen’s up to about 20 lbs
and a few ounces and has been
keeping steady for the past month.
We have a physical therapist and a speech therapist (just started) each come
twice/month. The PT works on Stephen’s strength and physical coordination
while the ST will be focusing on Stephen’s speech development and eating.
All in all, Stephen is doing great physically and our focus now is on his
I’ve updated our home page with two pictures of Stephen taken today at his
birthday party – one before eating his nilla wafer pudding cake and one
after – it’s obvious which is which! The homepage is
Thanks to all of you for your thoughts and prayers – we really appreciate
Gary (and Elizabeth) parents of Daniel (16), Michael (14), Joshua (12),
Rachel (10), John (8), Nathan (6), Esther (4) and Stephen (1) (T13
Mosaic born 10/5/04)
Here’s a quick update on Stephen. We took Stephen in on Wednesday
morning, Aug 31st, for a Cleft Palate repair along with tubes for his
ears and a circumcision. The tubes surgery was first and took only
about 20 minutes. That went great – praise God! He then had his cleft
palate done and this took about 2 hours and the doctor came and told us
it also went very well! This was followed by the circumcision which
took about another 20 minutes and it also went great. So, we were able
to meet Stephen in recovery at about noon and Elizabeth was able to hold
him and comfort him. As was expected, he was definitely uncomfortable
and they gave him morphine for pain. By about 2 PM we were in a room on
the surgery wing and they started giving him some pedialite through his
G-tube which helped to keep up his liquids and to provide some feeling
if being satisfied in his stomach.
As time went on, he became a bit less uncomfortable but still was
agitated at intervals. Liz slept with him in the room on Wednesday
evening and he got up about every hour so she didn’t get any sleep but
there was a noticeable improvement by the morning – the improvement was
in Stephen but at the expense of Liz’s sleep! But we were very
We were expecting to have to stay in the hospital until at least today
but about noon yesterday the doctor from plastic surgery came (they were
the primary surgeons and they performed the cleft palate repair) and
said that the surgery looked great as far as they can tell and that we
could go home in a couple of hours if we wanted! What an unexpected
blessing! So, we left the hospital yesterday at about 2:30 pm and
Stephen did great on the ride home – we arrived at about 4:30 PM.
Stephen was up about every 1 to 2 hours last night and Elizabeth got up
with him to either comfort him or to give him some food. He’s up now
(about 9:30 AM on Friday) and is looking great. He’s eating at a normal
pace and getting his nourishment though the G-tube. He’ll be able to
take the Haberman bottle in about 3 weeks from the surgery. We have a
check up with the Cleft Palate surgeon next Friday.
So, this couldn’t have gone better. We are so thankful to the Good Lord
for providing for Stephen and our family. Elizabeth needs some sleep
but that will come with time and once he gets back in a routine.
Thanks for all you prayers and thanks for the meals being brought over –
they are very much appreciated. Here are some things that we’re
especially thankful for:
1. That the surgeries went so well and that Stephen is doing great
2. That we were able to come home quickly
3. That all of the circumstances and details surrounding the surgeries
worked out so well
4. For the wonderful Doctors and Nurses that God provided for Stephen –
they were excellent and have such a love for the children
5. That I was able to stay at the Ronald McDonald house – that is an
6. That my MS symptoms have improved and that God provided ways for us
to overcome these limitations so well – He really does provide all of
We continue to appreciate your thoughts and prayers for Stephen and our
family. If you would like to pray for specific items, please consider
praying for the following:
1. That Stephen’s recovery continues to go so well and that the
surgeries will have been a complete success
2. That Stephen will progress regarding speech and eating solid foods –
especially now that his palate is repaired.
3. That Stephen will soon be able to sit up by himself and begin to
crawl once he’s recovered from these surgeries
4. That my MS symptoms will continue to improve and that my functioning
will return back to normal
We are so thankful for all of the people that the Good Lord has put in
our paths to pray for Stephen and to help his and our needs – I can
honestly say that all of our needs have been met – God continues to
exceed our expectations!
Thanks for all your thoughts and prayers,
Gary (and Elizabeth) parents of Daniel (16), Michael (14), Joshua (12),
Rachel (10), John (8), Nathan (6), Esther (4) and Stephen (T13 Mosaic
4-25-05...We can use your prayers for wisdom in making
decisions regarding Stephen's feeding schedule... Elizabeth and I continue
to appreciate your prayers for Stephen and our family... God has always
provided everything we needed at the precise time that we needed it...
Stephen has clearly been a joy and blessing from the Good Lord to everyone
in our family... Perhaps this is the peace of God that "surpasses all
comprehension" that Paul is talking about in Phillipians 4:6-7
Stephen Thomas Comparetto was born on Tuesday, October 5, 2004 in an
ambulance outside the emergency room entrance at Loudon County Hospital in
Leesburg, VA – we didn’t quite make it into the hospital! Prior to his
birth, we were told that Stephen had a cleft lip and, probably, a cleft
palate based on an ultrasound during the pregnancy. On the Friday after
Stephen was born, the doctors told us that he had Trisomy 13 mosaic. We were
devastated – primary because we knew so little about Trisomy 13 and
everything we read and were told about it had the sound of hopelessness
about it. But, praise God, Stephen has been an absolute blessing and a joy
to our family and is doing very well. We are also very thankful for the
wonderful doctors and nurses that God has provided for Stephen every step of
Stephen had open heart surgery on January 25, 2005 to correct a large VSD
and, while in the hospital, it was decided to correct the mal-rotation of
his intestines on February 3rd. The results of both operations have been
dramatic in improving Stephen’s health! His lip correction is scheduled for
March 30th – we may also have a G-tube inserted at that time to augment his
feedings. Currently, he takes about half of his nourishment with a Haberman
bottle and the remainder via an NG tube.
We have eight children with Stephen and all of them have been blessed as a
result of Stephen. Our second oldest, Michael, is shown in one of the
pictures holding Stephen. He has been a great help in taking care of
Stephen! Feel free to contact us if you have any questions – it would be a
joy for us to correspond with you.
Gary (and Elizabeth) parents of Daniel (15), Michael (14), Joshua (11),
Rachel (9), John (7), Nathan (6), Esther (3) and Stephen (T13 Mosaic born
Click here to read Elizabeth's beautiful letter of
for the family WEB SITE
Update April 24, 2005
Well, Stephen is doing great - we are so thankful to the Good Lord!
It's been a while since our last update so this one is pretty long. You'll
recall that Stephen had his lip repair surgery on March 30th and also had a
G-tube inserted at the same time. Both surgeries went very well. He came
home on April 2nd but he brought with him a stomach virus - that ended up
being pretty challenging for Elizabeth and I for the first week and a half.
He had a pretty serious bought of diarrhea and vomiting, along with a low
grade fever, and he lost about 1 1/2 pounds - along with being pretty
irritable. However, by about the send week, he got over the stomach virus
and started to do extremely well. He has since gained a couple of pounds
and is now up to 16 lbs 3oz at last weigh in! Also, his breath holding
episodes have decreased dramatically
- he had one today but hadn't had one for about 1 1/2 weeks prior to this
and today's was a pretty mild one. Praise God! He has also been able to
keep down all of his food since recovering from the stomach virus.
His lip is recovering very nicely - it's hard to remember how he looked
prior to the lip repair without going over the old pictures. The G-tube is
working out OK - although it's not going as we had originally hoped. We were
expecting to feed him continuously throughout the night and that he would
remain sleeping - well, unfortunately, this isn't how Stephen expected it to
work! The first night he was up every hour - as well as Liz and I! He just
didn't do well with the continuous feed - perhaps because of the stomach
virus (?) - so we decided to feed him at discrete intervals - similar to the
way that we were doing it prior to having the G-tube. We prepare three
meals for him and put the formula in the bag that's attached to the feeding
pump. We then feed him at between 9 and 10 PM - it takes about 40 minutes.
We then get up and feed him again at about 4 hour intervals - unless he gets
up prior to that! For the most part, the first two feeds go pretty well
while the third feed is still a little erratic in terms of Stephen waking up
and fussing but we're hopeful that he'll be able to sleep through all three
feedings soon. We may also try the continuous feeds again and see how he
does. We can use your prayers for wisdom in making decisions regarding
Stephen's feeding schedule. We also started to feed him using the special
Haberman bottle again during the daytime feedings - we weren't able to do
this until the 3-week point after surgery. He's been taking about 60 ml
(out of ~190) by the bottle and this is a good sign - hopefully he'll
continue to increase the amount he takes by bottle. We feed him the
remaining amount using the G-tube.
Elizabeth started using baby food with Stephen the other day - the first
couple of times it has been pretty funny - sort of goes in through the mouth
and out through his nose - doesn't have a palate to stop it! We're hopeful
he'll get the hang of it eventually.
Stephen only has two more operations that we know of at this time. The
first is currently scheduled for August 31st for his cleft palate repair.
While it certainly will not be as serious as the heart operation in terms of
risks, etc., we are told that it will be much more uncomfortable for
Stephen, with a longer recovery time than for the lip repair. After the
palate, Stephen will need to have an operation to fix his nose but that
won't be until he's 3 to 4 years old. So, Lord
willing, we may only have one more surgery for Stephen in the near term.
Elizabeth and I continue to appreciate your prayers for Stephen and our
family. We were reminiscing about the last 6 1/2 months the other day - I
put together a slide show of Stephen's pictures during that time frame and
we were looking at it together on my computer - in fact I just looked at it
again just now - and we realized that, while it was very hard at times - God
has always provided everything we needed at the precise time that we needed
it. Whether it was a meal, a word of encouragement, the right Doctor or
Nurse, the right appointment time and place, advice from the Trisomy e-mail
list to a specific question or Stephen sleeping for a few extra hours
unexpectedly - we always got what we needed to get the job done and it
hasn't seemed like a burden. It reminds me of the verse in 1 John 5:3.
People have often asked us how we can do what we're doing but I have to tell
you - if you ask us that question at a particular time when things are going
well we'd say it's really tough but the mystery is that, except for those
short instances, it really doesn't seem like a burden at all. In fact, the
total opposite is true - having Stephen has clearly been a joy and blessing
from the Good Lord to everyone in our family. Perhaps this is the peace of
God that "surpasses all comprehension" that Paul is talking about in
6 1/2 months ago, not knowing what to expect, would we have chosen to go
through the past 6 1/2 months if we were given the option? - probably not -
but, having known the joy that we have had with Stephen and having seen how
each of us in the family has grown because of Stephen, would we choose to do
I again - absolutely! - praise God for His wisdom - His ways are not our
ways and I'm thankful for that!
I've enclosed several pictures of Stephen. The first picture, Stephen_1, is
a picture of Stephen when he had his arm restraints about 5 days after the
lip surgery. The second picture has Stephen smiling about 2 ½ weeks after
surgery. The third picture was taken last Thursday during his first
Physical Therapy session. He is a joy!
Thanks for all your thoughts and prayers,
Gary (and Elizabeth)
Update: April 2005
Stephen came home today from Children's Hospital. We had
hoped that he would be able to come home yesterday; however, the doctors
felt that he should stay one more night so that they could observe how his
feedings went with the G-tube. All went great and continue to do so - we're
very thankful for that.
He has something called a Logan Bow over his upper lip to both protect it
and maintain pressure on it so that the lip stays together until fully
healed. It is a curved metal device attached with tape on the sides of
Stephen's face. He'll need to wear it until next Wednesday. Stephen also
has on arm restraints that prevent him from bending his arms - this is to
prevent him from touching his lips. Stephen will need to wear these for
We have follow-up visits on April 12th with the plastic surgeon that
performed the lip surgery and the GI people regarding Stephen's G-tube.
I've attached a few pictures - I finally figured out how to take
pictures with less resolution resulting in reasonable memory!
One picture is of Elizabeth with Stephen - one is with me and Stephen - and
the third picture is of Stephen all by himself. You can see the Logan bow in
the pictures - all three were taken on Thursday - the day after the
surgery. The lip is supposed to continue to heal and will look like a
regular lip within the next couple of weeks - at least we're told this! So
don't be discouraged by how it looks now - he's on his way to a new lip!
Thanks so much for your prayers - we really appreciate them and are so
thankful for how the Good Lord has taken care of our little Stephen!
Update March 2005
Happy Easter to everyone! I hope you all had a blessed day! Here's an update
Stephen has been doing very well the last couple of weeks. His breath
holding episodes have decreased significantly in frequency and severity.
He's only been having 0 or 1 per day, without the need for oxygen. Also,
he's generally been able to keep down his food.
There have been a couple of times where he's suffered a little with what
appears to have been a stomach virus but these episodes have been short and
he's recovered quickly from them. He's up to 15 lbs 3 oz - he was
10 lbs 6 oz when he returned home from the hospital after having his heart
and intestine surgery on February 8th. We're so thankful that he's doing
well with both the breath-holding and in gaining weight.
His oral intake still varies a bit - lately, it has been in the 40-60 ml
range per feeding which is 1/4 to 1/3 of his total nourishment. Because he
has not been able to increase his oral intake to the point at which he can
sustain himself using only the Haberman bottle, we have decided to have a
G-tube inserted for the balance of his nourishment beyond which he gets with
the special Haberman bottle. We will continue to feed Stephen with the
Haberman bottle and use the G-tube for the remainder of the feeding. Our
hope is that Stephen will get to the point at which he takes all of his
nourishment orally without the need for the G-tube - perhaps this will
happen after the palate correction which would likely be in 3-4 months.
Stephen is scheduled for surgery at Children's Hospital in Washington DC to
correct his cleft lip this coming Wednesday. In fact, he will also get the
G-tube inserted on Wednesday, at 7:30 AM, and this will be followed by the
lip repair which is supposed to begin at about 8:00 AM. We would appreciate
your prayers that the Good Lord would direct the doctor's hands such that
both surgeries will be successful and that Stephen will come through them
Elizabeth and I continue to do well and the children are also doing well -
everyone's in good heath and we're catching up a bit with home school.
Elizabeth's mom has returned to us and that is also a great blessing for us
Elizabeth and I appreciate all your thoughts and prayers for Stephen and our
family - they are such an encouragement to us!
Gary (and Elizabeth) parents of Daniel (15), Michael (14), Joshua (11),
Rachel (9), John (7), Nathan (6), Esther (3) and Stephen (T13 Mosaic born
Stephen's 1 yr birthday!
during his first Physical Therapy session
smiling about 2 ½ weeks after surgery.
5 days after the lip surgery
The photos below were taken March 31, 2005, the day
after his lip repair and G-tube insertion surgeries. :
2005 Family Easter Photo with Elizabeth's Mother
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and used on this site with their permission.
Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela
Sullivan 2004, used with permission.
|If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
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.
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