Stephen Thomas Comparetto

Born: October 4, 2004

Berryville, Virginia (VA) - Trisomy 13 Mosaic

Update 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 full sentences.

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 enjoyed him.

Of 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!

- - -

9-11-07

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 cleft palate.

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 with him.

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.

His 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 http://www.user.shentel.net/garycomp/.

Thanks
Gary (and Elizabeth)

Gary Comparetto
garycomp@mitre.org

- - - -

Update 1/28/07

Hi,
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 social!

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.

Gross 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 night-bonding!

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 with us.

Gary (and Elizabeth)

Update: 2-5-06  The Comparetto Family of Berryville, Virginia Web Site

Hi,
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 months.

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
dinner table!

Stephen 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 south :-)

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.

Thanks
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)
 

Update 10-4-05

Today is Stephen’s 1 yr birthday and I thought I’d send out an update!

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 memories.

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 developmental skills.

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 http://members.megapipe.net/gmc/

Thanks to all of you for your thoughts and prayers – we really appreciate them.

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)

Update 9-1-05
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 thankful!

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 excellent ministry
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 our needs!

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 born 10/5/04)

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 the way.

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 10/5/04)

Click here to read Elizabeth's beautiful letter of encouragement

Click here 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 Phillipians 4:6-7?

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 three weeks.

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

Hi,
Happy Easter to everyone! I hope you all had a blessed day! Here's an update on Stephen.

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 safely.

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 all.

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 10/5/04)

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. :