Dustin Joshua (DJ) Is On The Way

Walk the Walk, Talk the Talk

2010-05-06T11:20:00.000-07:00

Sorry for no update in a while...

We're getting into the swing of spring, including Easter, yard work, church softball (Rob), soccer (Zach), Y-Guides Spring Outing weekend (Zach and Rob), and tennis (Rob). We also took sometime to visit Grandma Sandy in Las Vegas, including several days spent at Zion National Park. Checkout pictures here (baseball opening day and Spring Outing) and here (Zion).

Dustin is doing really well and our focus now is taking more steps walking and sign language - he now has a speech therapist (focused now on signing). Dustin now has feeding therapy (Mon), speech therapy (Tues), physical therapy (Weds), developmental therapy (Fri) and vision therapy (Fri). Whew - that's alot right! Thankfully everyone comes to our house except the feeding therapist as Lisa will go to Duke (about 20-25 min drive) for this. We are blessed to have all of this therapy available for Dustin!

Dustin has been taking 2-3 steps at a time for a few months now although he really prefers either the typical crawling motion or one best described as the "Mowgli"crawl from the Jungle Book movie. With either crawling motion he can really move! Of course he sees us walk and he really wants to walk too and continues to try and both increase his success and confidence. He's also getting into things so we have started the babyproofing. In the past week, his physical therapist has started working with him on stairs. We have to watch this one because we'll need to have all the gates up (can you say steeplechase) around the house before he reaches too much success on this one.

With signing, he is working on go, more, eat, and done. He is doing well with "more" but less so with the others...signing in the context of eating works best but other settings and situations are conducive. This is definitely a prayer request as we want to communicate with our little buddy!

All in all he is doing great! He is enjoying Spring as he can crawl around in the grass and enjoy his new swing which he really loves!

Zach is doing well and getting to the end of 1st grade - tennis starts next week and pretty soon it will be camp season! Zach is also very excited that we painted his room - he loves his new room.

Thanks for your prayers and love. Go Sox!

Run For a Prize That Lasts Forever

2010-03-07T10:55:00.001-08:00

Today is my birthday. I am thankful for my God for He is great - there is no greater birthday present than Him. Of course I am thankful for Lisa and for Zach and Dustin.

Sorry it has been a bit without an update on Dustin.

Recently, I have spent time with other families that have a son almost exactly the same age as Dustin - who is almost 20 months old. Boys Dustin's age are both walking and talking and for a fleeting moment I pause for what should be. I fall into that trap which makes me compare Dustin to other kids. In other words, I am running a race, in Paul's words "for a crown that will not last". I am thankful that these moments are few and brief.

To say that Dustin is a joy, a blessing beyond imagination, is an understatement. His spirit is powerful and our days are filled with glimpses into his soul. He has an amazing smile and an infectious laugh. He loves his mommy and daddy, his big bro Zach, and even his brother Burdick the cat (and Burdick is very tolerant of the love he receives that is often not very gentle!).

The progress with Dustin is noticeable - he is eating more solid foods every day, he has learned how to wave and clap, and he loves to dance to all kinds of music - especially Barry White! A few days ago, he even wore his glasses for nearly 5 minutes!

Right now, Dustin is standing - proudly! Dustin will talk, he will walk, and of course he will run - to our chagrin many times he will run the other direction very quickly. For this we are sure.

With or without Dustin, our charge is to run for a prize that will last forever, and to stay close to Him as he is the One who will be the"lamp unto our feet". Our prayer is that we do this with even greater vigor than we might otherwise do.

Many of you might have already read this story, or seen this video - but I am reminded of the British track star Derek Redmond, who in the 1992 Barcelona Olympics, felt compelled to finish his 400m race, despite an injury mid-race that instantly ended his Olympic medal bid. It reminds me of Paul's charge for us to run the race for the crown that will last.

Run the race and let God work out the outcome - for we know that if we let Him use us, the outcome will be great.

Thank you for all of your love and prayers - God works!

Dustin Got His Goggles!

2010-01-26T17:04:00.000-08:00

Hi all and happy new year to everyone.

Other than a sinus infection that got a hold of both Dustin and Lisa, we are all doing well.

Dustin is making progress with standing up on his own as he can now do this for 3-4 seconds at a time. He loves to try as he is very determined and is very proud of himself and his progress. Big bro Zach is very encouraging and loves to play with Big D (now 18 lbs!).

The big news is that Dustin got his goggles/glasses yesterday and we are asking for prayer that he will cooperate to keep them on! He is near sighted with 20-80 vision and it is important that he get used to these as better vision will help in any of number things related to his development - including an ability to better communicate using sign language.

Check out the picture of Professor Dustin and thanks for your prayers!

We love you!

Merry Christmas and Happy Hanukkah

2009-12-12T07:02:00.000-08:00

Hi all,

We drive to Sanibel next Friday for Christmas and will be down there for 2 weeks. This year we are getting on the road by 5am and doing the drive (about 13 hrs) in one day. We are hopeful that everyone travels well, including Burdick the cat! Burdick does not typically travel well - not that most cats do - but for the past two years he's been generally OK.

This is Dustin's 2nd Christmas and we are thankful for him as he is a huge blessing to us and Zach thanks God for his brother just about every night.

We are thankful for all of your prayers and thankful that we can share this journey with you.

Merry Christmas to you all, Happy Hanukkah, and have a happy and safe holiday season.

Rob and Lisa

Walk This Way

2009-11-13T10:28:00.000-08:00

Dustin's physical therapist came this week and said that he is very close to walking. Despite the fact that Down kids deal with hypotonia, or low muscle tone, walking at this time (16-18 months) would be roughly in line with other kids who don't have this issue. Praise! We are very thankful for the work of our physical therapist (TR), as we are for all of the therapists that we work with - developmental (Courtney), vision (Dana), and feeding (Jodi).

New pix

2009-11-12T13:30:00.000-08:00

Check 'em out!

Last Man Standing

2009-11-07T14:45:00.000-08:00

No new update from the ENT to determine the extent to which the removal of the adenoids improved Dustin's breathing. He still snores somewhat...although his feeding therapist has indicated that she can hear the difference. Only for the trained ear we suppose...All in all Dustin is doing great as are all of us. We've all had colds to a certain degree but no one was taken down for the count and no one has had H1N1 - praise. Halloween was good fun - Zach was Scooby Doo (or should we say "Rooby"?), and Dustin was an otter. It was nearly 70 degrees here and both we're covered from head to toe in their costumes...needless to say both got very hot. Not enough to stop going out for candy of course!

Only other thing to note is how well Dustin is doing sitting up and standing - he is holding on but able to stand. Now this is his favorite position...although he is still doing his army crawl around the house...which we are thankful for because he is cleaning the floor for us in the absence of our own efforts (kinda sad).

We are of course saddened by the Yankees win...feel free to gloat you Yankee fans....we've moved on to college football and the bowl prospects for both Cal and TCU.

P.S. No new pictures to report - we have them just not posted to our Picasa account.

Adenoids Removed This Morning

2009-10-08T18:07:00.000-07:00

OK...short update as Rob is in Atlanta and Lisa is managing at home. Dustin had adenoids removed this morning. Technically, they were "vaporized". Kinda cool that the little guy was the star of his own cool sci fi flick...except sans video footage! Dustin was under general anesthesia and the whole thing took less than an hour and home the same day. I can't avoid a political statement here but I am very concerned about the future of healthcare as this particular procedure for us was somewhat elective but perhaps in the future it will be rationed...

Thanks for your prayers as we remain prayerful for Dustin to fully recover and for the obstruction to be a non issue. More on this as we go for follow up with the Duke ENT.

Have to keep the update brief b/c playoffs are on...GO SOX!!

Near Resolution on Adenoids/Apnea Issue

2009-08-26T17:48:00.000-07:00

OK. So we finally did a sleep study at Duke and got the results from the ENT today. Before we get to that, we have to say that the sleep study process is excruciating! Rob went with Dustin as you have to spend the night. You get there at 8pm and they have to wire up the little guy with about 20 some odd wires all over his head, his body, and his arms and legs for monitoring of his breathing during sleep. It took about 2 hours to ensure all wires were attached properly, and both gauze and medical glue of some sort was used - Dustin was crying the whole time and Rob had to leave the room because he could not see him in such distress. When he got back in the room, he saw that Dustin looked like a mummy with gauze wrapped around his head! So they went to sleep at about 1030p. The technician checked on Dustin throughout the night and at 530am the next morning came and told them that the sleep study was over and that they had to go home! So home they were home by 615a and back to sleep!

Now...the results indicate that there is some breathing obstruction. During the study, Dustin stopped breathing enough to wake him up twice and another time it stopped but he did not wake up. The ENT indicated that the obstruction is not serious but would nonetheless recommend an out-patient procedure to remove his adenoids given it is a relatively straightforward out-patient exercise.

We have not scheduled anything but feel led to do it. Please pray for us to make the right decision.

Otherwise Dustin is doing GREAT and is really doing well working on standing up and he now misses his big brother during the day because Zach has started school - 1st grade, can you believe it!?

Thanks as always for your prayers and love.
Rob and Lisa

P.S. We had a great time in D.C., including a grueling 18-11 Sox win over the Birds. Check out pix here - we added to our existing July album.

1st Birthday and Good News on Eyes and Ears

2009-07-16T05:31:00.000-07:00

Hi All,

We recently retested Dustin vision and they feel that his vision is in the range of acceptable for his stage of development. While it is very likely that he will have glasses, there is no need for any additional treatment - although we will continue to work with the vision therapist. Praise on this. We also retested Dustin's hearing and although it was not a very sophisticated test (he still does not have as good head and back control to stay up on his own for this) again it was in the acceptable range for his stage of development...praise again. On this ladder note, this of of course is good news for his speech development (although it'll be a bit before meaningful speech develops).

All in all Dustin is doing great. He is scooting around the floor (not yet crawling) and making great progress with his physical, developmental, and feeding therapists. He is doing much better sitting (and staying) up, he can drum with his hands (vs brushing his fingers across the drum) and he is eating rice krispies, pureed fruits and ice cream (LOVES this last one!).

We again thank God for Dustin and Zach as they are both huge blessings in our lives. Zach is in art camp this week and having fun. Grandma Sandy (Rob's mom) is also in town for Dustin's birthday and a visit. We are also looking forward to the end of the month when we travel to Baltimore/Camden Yards to see the Sox play at Fenway South. While we're up in the area, we're gonna hit Mt Vernon, and the sights in DC - should be fun.

Thanks for your prayers and love - God is awesome!

Argh - No New News

2009-06-16T18:00:00.000-07:00

So we went over to Duke today for what we thought was going to be the ABR but unfortunately they did the same hearing test that they did last week at the ENT in Raleigh. I am getting a close up glimpse of how screwed up healthcare is...electronic medical records would have certainly helped Duke more fully understand Dustin's case and perhaps we wouldn't have needed to do another hearing test like last week.

We did get to meet with the Duke ENT vs the Raleigh ENT and she recommended the following sequence:
1. Spray steriods (Flonase) for snoring and any potential obstruction for breathing during sleeping; this may also address (although not fully) any issues related to apnea or adnoids (see #3)
2. Prescription drops to clear additional obstruction in one of the ear canals; kids with Down sometimes have smaller ear canals increasing the incidence of obstruction (definitely the case with Dustin)
3. Come back for another Duke ENT eval regarding obstruction and evaluate whether an ABR will be needed; if so, we can schedule BOTH the sleep study to evaluate whether there are any adnoid or apnea issues (finally!) AND perform an ABR > this way Dustin only goes under anethesia once. This make sense to us...

p.s. Rob joined Facebook and evaulating how to pull together this blog, Twitter and Facebook to keep everyone in touch

40DB vs 20DB - Too Much Loud Rock Music

2009-06-09T18:36:00.000-07:00

Dustin must be listening to too much hard rock music : )

We finally got a "decent" hearing test today and mixed results. They were hoping he could test well at 20 decibels (db) which is normal conversation level. However, he did not respond to this level but did at 40 db. This is of course an improvement over the initial test where we started (pre tubes) with 70 db.

So our next step is an appointment at Duke University where a more sophisticated test can be administered - this test is called sedated ABR and this test will be done next week.

We are praying for good results from this test.

Tubes (Not the Band!) in Ears

2009-05-30T06:59:00.000-07:00

Hi all,

Sorry its been a bit since our last update.

Dustin recently had tubes in his ears to help fluid drain from his ears and we are hoping that we can get a good hearing test. Because he has had so much fluid in his ear this has prevented a good hearing test - hearing is critical for speech development so this is a prayer request. Dustin will have an appt with the ear nose and throat (ENT) guy in early June so we are hoping the fluid does not collect and we can get a good hearing test.

Otherwise, Dustin is doing great! He is now about 15 pounds and he is just over 2ft 2in tall - doesnt it seem silly to keep referring to kids as "inches long" once they get into "feet"? He is not yet crawling or sitting up but the therapists keep working on this and he rolls really well and can spin around while on the floor which is very close to crawling. The therapists are pleased with his progress.

We've added photos here.

Zach is very excited to wrap up Kindergarten and he will start various camps and things this summer. He wants to keep taking tennis lessons so this is exciting - Rob and Zach play a bit.

Thanks for your prayers - God works!

9 Months and Counting

2009-04-19T18:25:00.000-07:00

Well, Dustin turned 9 months old yesterday. No word yet on the apnea or the adnoids...

DJ now weights 13lbs, 11oz and he is 25 inches long - still low for his age but he is just where God wants him (Psalm 139). Both Dustin and Zach bring such joy into our lives...Dustin is now regularly eating solid foods and eating everything...he has yet to reject any of the foods, including peas! Lisa has now stopped pumping so Dustin is also on formula as he gets a blend of this with the solid foods.

Dustin is making good progress with developmental and physical therapy...not crawling or sitting up yet but the therapists say he is doing just fine.

Please pray for no issues with apnea or the adnoids and for no issues with hearing or vision testing.

Dustin is overall doing great is he is developing a great smile and a little giggle. Big brother Zach likes to play with him and Zach is doing well also. He is almost done with his first year of kintergarten and really doing well with his reading. Zach is now taking tennis lessons and today he even rode his bike on his own without training wheels - praise.

Lots of love and thanks for your prayers.

Latest pictures here.

Sinus Infection

2009-03-17T19:26:00.000-07:00

Well...we still need to test for sleep apnea or adenoid issues but in the meantime Dustin did turn out to have a sinus infection so we'll have to wait for this to clear up (antibiotics for 10 days or so) before further testing...stay tuned.

Potential Sleep Apnea or Issues with Adenoids

2009-03-15T19:18:00.000-07:00

Praise:

that Dustin has started eating solid foods! We've started with rice cereal and squash. Dustin seems to like them both and if he continues to we'll slowly increase the amounts and ween him off breast milk at least one meal at a time. Right now he gets mostly breast milk and some solid food.
that Dustin's Developmental therapist is good and he appears to enjoy it. The therapist brings a guitar and plays and Dustin likes the sounds and the vibrations of the strings.
that we will dedicate Dustin next week at our church.

God is indeed good - Dustin is a huge blessing as is Zach. Dustin already has this amazing smile that lights up his entire face. Zach is a great big brother and loves Dustin a ton. We are thankful and in awe of how God works.

We do seek your prayers regarding a potential issue with Dustin where we might have to address it either with a tonsillectomy or adenoidectomy. For more on this, see here. It does not appear serious but it is something that we should attend to now or lack of sleep could lead to developmental or behavioral problems down the road.

We do hope to get a snapshot of Dustin with his smile but it may be tough. While he does smile often it is very hard to get him to keep the smile!

We have an appt with the pediatrician this week - more as we hear it.

Thanks for your prayers.

p.s Dustin now weighs 12lbs 14ozs (still small for his age but definitly getting bigger!)

Pilates!?

2009-02-24T16:46:00.000-08:00

Hi y'all...it's kinda scary - Rob has been listening to more and more country music. I suppose with our move below the Mason-Dixon line, it was bound to happen....

Anyway, not much new since last update.

Dustin has started vision therapy - it is going well (Lisa likes the therapist that we have) and we remain prayerful that the aforementioned nystagmus is not something more than just that. The therapy consists of various exercises we can do to test and "exercise" Dustin's tracking.

Lisa has found a new developmental therapist but therapy has not yet started.

Physical therapy continues and this time with a pilates ball - who would've thought? The therapist gave us a pilates ball so that we can sit Dustin on top of the ball and hold him up while we roll the ball in different directions. The exercise allows Dustin to maintain has head control and balance while the ball underneath him moves from side to side at different angles.

Feeding therapy continues although Dustin has not yet started on solid food. On a related note he has been very constipated (I know...TMI) so his diet sometimes now consists of carrot juice or juice/milk with either corn syrup or canola oil. Yuck! He does like the carrot juice though...makes for very colorful laundry!

That's about it.

Picture update from Zach's indoor rock climbing....check it out.

Bye y'all!

Olympic Thumb Sucking

2009-01-21T17:50:00.000-08:00

Hi all,

A good amount of stuff for this post as the number of appointments for Dustin seem to be increasing:

Pediatrician
- General health is fine; weighing in at 10lbs 11oz, 24 inches long (roughly 25th percentile but gaining); praise.

Hearing Test
- Lisa felt that Dustin was not hearing well (reacting well to voice, etc.) and so she arranged for a hearing test. The test was inconclusive - one measure of the exam was good and one one was not but could have been impacted by Dustin's cold. We will retest in 6-8 weeks; please pray for good hearing test results when we do this as poor hearing will impact DJ in many ways, including his ability to talk.

Physical Therapy
- Although we've referred to this in previous posts, Dustin actually started PT last week with a focus on development of neck and back muscles so he can progress to solid foods (sitting up and holding his head up)

Feeding Therapy
- This has started so Dustin can get used to the feel of spoons (no solid food yet) in his mouth

Developmental Therapy
- Lisa has not been happy with the therapist we've been using so please pray for wisdom to select new one; DT is distinct from PT in that DT is focus on "tasks" vs "muscles, etc."

Opthamologist
- Follow up appointment from Oct where it was found that Dustin had nystagmus and delayed visual development; please pray for progress here. Dustin's pediatrician actually has nystagmus so this can be overcome.

We are thankful for support from the state of North Carolina which provides free services and guidance through North Carolina Early Intervention Services and Children's Development Services Agencies.

Although this post could give one cause for concern, please know that Dustin is otherwise doing great and of course one of our greatest joys - with one other being Mr. Z (Zach). They are affectionately referred to in our household as Mr D. and Mr Z.

Dustin has been spending lots of time on his tummy these days - we put him down on his back and then he rolls over onto his tummy. Then he proceeds to grunt and groan as he works to hold his head up....no pain no gain. He also grunts and groans as he sucks his thumb - Olympic thumb sucking.

Zach had two snow days yesterday and today as we had 3 inches of snow and this of course paralyzes the city (it's a bit amusing compared to Boston and Chicago) - no school, lots of other stuff closed. Today Zach and Rob built a snow man in the backyard (picture soon). Recently Zach and Rob started indoor rock climbing together - good fun (again more pictures on this soon).

Thanks as always for your prayers and love - we really feel it.

DJ Heads to Boot Camp

2009-01-09T17:42:00.000-08:00

Happy new year to all and we hope that you all had a blessed Christmas. We had a great time in FL (13hr one way drive - ouch!) with Lisa's family and Zach enjoyed seeing all of his cousins. Dustin enjoyed himself as well as he got lots of attention! Pictures link here.

Since we've been back, we've had two appointments for Dustin, one with the physical therapist and one to check progress with Dustin's eyes. The PT said that Dustin was in the 10th percentile (90 percent of kids his age are ahead of him) regarding head control. Head control is key so that he can swallow and intake food other than milk. The PT gave us a few new exercises for this so we are off to the baby army surplus store to get some fatigues for Dustin - we're off to boot camp. Seriously, we're not horribly concerned here but we certainly want DJ enjoy other foods as soon as possible (as he does we're sure!) - please pray.

The eye testing on the other hand went much better. Last time, Dustin did well on vertical tracking (follow something like a finger or object) which is harder but did poorly on horizontal tracking. This time, DJ did well on both - praise.

All else is well and we've settled back into a routine - Rob has started a new role at Oracle with a former boss that he likes alot and Lisa is glad to have gotten through all of the rush of Christmas (although she likes Christmas alot and still wants to listen to Christmas music - Rob vetoed this).

Thanks for all of your Christmas cards - it's always fun to see the pictures and to hear about the goings on.

Thanks again for your prayers and we love you all.

New Camera - See Pictures Link

2008-11-30T19:11:00.000-08:00

We've finally gotten a new camera - the "old" one was from when Zach was born and it was eating batteries such that we could not take more than 4-5 pictures without having to fully recharge the batteries again.

Now that we have the new camera - we will be regularly posting new pix where you can see them from the slideshow link on the list of links on the right index of the main blog page.

p.s. Is it not disappointing that things like cameras and other electronics these days have such short lives?

Cardiologist Report: "All Clear"

2008-11-30T19:07:00.000-08:00

In a previous post from a month or so ago, we shared how DJ's cardiologist was monitoring holes in his heart. We've now been back to see the cardiologist. Praise that the cardiologist reported that all of the holes have closed up so Dustin should not have to see the cardiologist again - all clear.

We Are Thankful

2008-11-23T06:30:00.000-08:00

As we head into the holidays, we are certainly thankful for our many blessings.

Dustin is of course a joy and Zach is doing well also.

Although he sometimes comes home with frowns on his daily summary for "timeouts" - Zach is doing well at school with his reading (he can already read some books all by himself) and math (we do math at night using M&Ms) and he has been enjoying soccer (also just finished karate and pottery).

While we monitor things and plan ahead with Dustin, he is doing great:

Weighs 9lbs 12oz

Because he was spitting up alot for a while we thought he may have reflux but he has been doing better with this.

A state provided physical therapist comes once a month to check in on his development and to help us plan ahead.

DJ also had his first appointment (nearly all day) at the Down Syndrome Clinic at Duke; everything here went well. We were concerned over some blood tests because we thought he might have anemia but he does not - he is however taking - iron and vitamin D supplements.

We are looking forward to Thanksgiving.

Blessings to you and yours.

Rob and Lisa

(Big) Dustin is Such a Stud!

2008-11-18T16:17:00.000-08:00

Although it was an optional prayer request - we thank you and offer huge praise for (Big) Dustin's awesome day today...Dustin Pedroia won the AL MVP, capping not only an incredible season where he also won the Gold Glove and Silver Slugger awards for defensive and offensive performance at his position, but also capping a very impressive first two years in the MLB where he has received Rookie of Year (2007) and of course the granddaddy of achievements - a World Championship!

GO DUSTIN AND GO SOX! Spring Training is only 3 months away...

We can only pray that our little Dustin has the same significant impact as he makes his way...

More on little Dustin (DJ) in next post - very soon (we promise).

He's a Maniac, Maniac, Maniac

2008-10-21T15:21:00.001-07:00

OK...so we sometimes get carried away with titles to our blog posts...

We titled this one because Dustin's first appointment with a physical therapist was yesterday. Sometimes, the kids with Down have muscular development challenges. This can delay things like walking, etc. The PT said Dustin's muscular development was very good at this point - on par with "normal". That said, she still gave us some exercises that we, including Zach can do with DJ. We can move his arms and legs side to side and up and down....so we can actually say that DJ has his own aerobics class (hence the post title)!

DJ now weighs in over 8.5 lbs...so this is moving along nicely. His size is helping with nursing (hopefully we'll get to the point where he does not also need a bottle - this would mean Lisa does not have to pump anymore).

The other day Dustin slept through the night - praise! This guy really does sleep well...

Rob's stress level is a bit better because one of his work projects is wrapping up.

Optional Prayer Request: Pray for comfort as we grieve the loss of the Sox to the Rays. Also pray that Dustin Pedroia gets the AL MVP...he really does deserve it as he was near tops in average, tops in doubles, tops in hits and he should be a gold glove as well.

Where You Been?

2008-10-10T18:51:00.000-07:00

Sorry everyone for no update in a while. We've kinda settled into a routine and neglected the blog. We don't want to take for granted how many people continue to pray for us so we will try to more frequently update you.

As of 22SEP, Dustin weighed 7lbs, 9oz. He was gaining weight at approx one oz a day - this rate won't keep up forever. The pediatrician told us he was very low relative to kids his age (he is 12 wks old today so we think he is more like 9lbs) but he is gaining at a very rapid rate. No concerns - praise.

The weight gain perhaps is a factor in his excellent sleeping. The typical routine is he eats (mix of bottle and Lisa nursing) for the last time at night at apprx 11p then he gets up only once during the middle of the night and then he won't awake again until 7 or 8am most days. This allows us to get decent sleep. Praise.

We saw the cardiologist as well - kids with Down are more prone to have heart problems such as holes in the heart - some of which require surgery. The cardiologist did find several very small minor holes but indicated that he felt very confident that these would likely close on their own perhaps within the next few months. Praise that no surgery required for this. We will continue to monitor this but no surgery for now.

We will be starting developmental physical therapy soon. In Nov we have our first appt at the Duke Down Syndrome clinic. Also in Nov we will have another cardiology appt, and an appt for urology for a circumcision.

Dustin got his "shots" so we have started bringing him out more and to places like church where there are bigger groups of people and with the shots we have less concerns about him being susceptible to others' colds, etc. You still have to watch for this but it is nice to have everyone go to church. Previously one of us would go and bring Zach and the other would stay home.

Praise for weight gain, nice routine, decent sleep.

More then anything, please pray for Rob to manage his stress - it is very hectic at work for him.

Thanks for all of your emails that you send to us - great articles about success with Down, etc.

Below are some links to recent articles:

Prom King with Down Syndrome Goes to College

Life's Essential Joys

6Lbs, 1Oz - Aerobic Eating

2008-08-30T05:54:00.000-07:00

At 6 weeks old, Dustin weighed in yesterday at 6lbs, 1oz - gaining weight at a slightly faster rate than normal. This is good. He is still eating every 3 hours, and aerobically we must say. We're jealous of how much he sleeps....otherwise all is good.

On an unrelated note, Zach started Kindergarten on Thursday.

Topping Out At Five Pounds

2008-08-16T07:54:00.000-07:00

Yesterday at his weigh-in, Dustin topped out at five pounds which is good news/praise. He needs to gain more heft and we are targeting end of this month for him to be six pounds - this is our prayer. All else is good as we have settled into a routine - feeding Dustin every three hours.

Praise: Dustin Is Home!

2008-08-05T16:39:00.000-07:00

Hi All,

Huge praise: Dustin is home.

Please continue to pray as we all continue to make this adjustment. Many thanks for your prayers, calls, emails, and support of all kinds.

Love, Rob and Lisa

Dustin Got Room Upgrade (When Did He Get Those Points?)

2008-08-02T18:49:00.001-07:00

Today Dustin got a room upgrade (when did he get those points?) as he moved from the ICN to the Special Care Nursery. This room has a higher ratio of kids to nurses and is generally the last stop on the way home.

Dustin started on mom's milk on Weds, I got to feed him from the bottle on Thurs, and today, he did not need any IV fluid feeding at all as of 5p - meaning he is weaning himself from IV fluids. As soon as he can consistently feed from mom's milk without any further nutrients via IV, then he will be near ready to come home. They want to do a few more tests, including the dreaded car seat test, which we may fail : )

We have also started calling Dustin "Spike" as his hair sticks up. We'll see if this sticks...

Lisa is doing fine and recovering nicely each day. We continue to pray for full recovery for Dustin and Mom, and for transition for all of us, including Zach.

Thanks again for all of your emails, calls, support and prayers.

Rob and Lisa

NG Tube Removed, Started on Pedialyte

2008-07-29T17:56:00.000-07:00

Hi all,

- Dustin's NG tube was removed today; PRAISE
- He started eating today, pedialyte; PRAISE

The next step will be gradual increase of pedialyte, then move on to mom's milk.

We praise Him for the progress so far and continued prayer for Dustin and Lisa's recovery; also for as smooth a transition as possible to our blessed new child, particularly for Zach.

Thanks again for all of your emails, calls, support and prayers.

Rob and Lisa

Inaugural Sunday Edition: Johnny the Bagger

2008-07-27T09:15:00.000-07:00

No significant update today on Dustin...we are waiting for the next milestone which is for him to start eating mom's milk vs getting fed intravenously.

We're going to devote's today's post to starting an inaugural Sunday edition for our blog - each Sunday post will be devoted to hope for those with Down. Sometimes it will be about Dustin, other times it will be about other folks with Down. Either way, we want people to understand that God has a purpose for us all and we need to be intentional about listening to God for His plans for us and being obedient to Him for what He wants us to do.

With what we have learned about Down Syndrome, the mantra with Dustin will be "no limits". The other day we learned of a young man with Down that was awarded a college degree. We are constantly learning about what is possible and we know that "we can do all things through Him who strengthens [us]. (Philippians 4:13)".

Today, our pastor's sermon was on gossip and how words are a gift from God and how they can also be destructive. Scott went on to tell a story about a young man named Johnny, who had Down, transformed his workplace through the use of words. This is a great story - thanks to God and for using Scott to deliver this message to us.

Checkout video of Johnny's story.

God bless all of you and thank you for your prayers, calls, emails, etc.

We sincerely do love you all.

Rob, Lisa, and Zach.

More Progress to Report

2008-07-25T16:32:00.000-07:00

I worked a full day today but Lisa went to visit Dustin during the day. Here is the report from Lisa:

Dustin has been off of ventilator for nearly two days; PRAISE
Dustin has been been completely weaned from morphine (post surgery); he is on a lesser pain killer as needed (which the nurses say is hardly at all); PRAISE
The nasalgastric (NG) tube is no longer used to suction out excretion but is instead used for drainage and he is pooping more and more often (meaning the digestive system is starting to kick in); PRAISE (although at some point we will cease PRAISE for poop...)
Another family in the ICN who was there last night (when we went home) said that Dustin was really active between 7-9p (we have not seen this yet but we'll PRAISE Him for it anyway)
Dustin has moved on from a sugar solution to more nutrient rich fluids for feeding; he is working his way up to mom's milk PRAISE
Dustin will likely have at least one more week in the hospital as he learns how to eat and digest on his own.
Zach is doing great as and he continues to ask about when Dustin is coming home
We will all visit Dustin tomorrow

We ask for praise for the progress so far and continued prayer for Dustin and Lisa's recovery; also for as smooth a transition as possible to our blessed new child, particularly for Zach.

Thanks again for all of your emails, calls, support and prayers.

Rob and Lisa

p.s. check out pictures at http://picasaweb.google.com/rwald3766/DustinJoshua

More Pictures

2008-07-23T13:31:00.000-07:00

We continue to add pictures here.

Lisa Discharged...Dustin Off of Ventilator

2008-07-22T19:03:00.000-07:00

Brief update. Lisa was discharged today and Dustin is off the ventilator and breathing on his own following surgery yesterday. Progress with both....more in coming days. Praise.

Dustin out of Surgery - Went Well

2008-07-21T12:27:00.000-07:00

Dustin's surgery went well - Praise!

He is heading back to the NICU (where he has been since birth). He will continue to have a feeding tube and the tube in his stomach to suction everything out. He will have both of these tubes until likely this coming weekend when he is expected to start eating on his own and his digestive system should start to kick in. For the next day or so he will also have a ventilator tube as he weans himself from the anesthesia.

For now we won't be taking any more pictures because we don't want any with all of those tubes!

We continue to pray for Dustin's recovery, Lisa's, and our transition (particularly Zach's) with our blessed new child!

Thanks for all of your calls, emails, and prayers!

Rob and Lisa

Surgery 21JUL: A Father's Prayer

2008-07-20T21:36:00.001-07:00

We spoke with the surgical team today and Dustin will likely head into surgery tomorrow around 12noon EDT to fix the duodenal atresia. I am praying not only for Him (God) to provide the medical team with the necessary skills to achieve success, but I am also praying for Dustin to know that God loves him more than his mommy and daddy ever can. Lisa and I of course love Dustin and we gain strength and peace from Christ our Lord and Savior. I pray that Dustin knows how God is with him just as He was with his namesake in the Old Testament:

"No one will be able to stand up against you all the days of your life. As I was with Moses, so I will be with you. I will never leave you nor forsake you."

Joshua 1:5

Pix Link

2008-07-19T18:59:00.000-07:00

See the "Our Favorite Links" panel on the lower right column of this blog for a new link "Slideshow of Dustin Joshua" - this is where we will continue to add new pictures.

The Eagle Has Landed

2008-07-18T17:14:00.000-07:00

OK....so we were off by only approximately 308 hrs. Lisa's water broke at approximately 0130 EDT last night, but she did not really get me up until 0330 EDT when she really felt her water break. All of us, Zach included, immediately set off for Duke University Hospital where a series of tests confirmed that indeed, Lisa was in labor (we were never in doubt!).

The team gave Lisa some drugs to dampen the contractions but this soon wore off and by 0640 EDT we were in the OR for a C-Section.

Dustin was born at approximately 0700 EDT this morning, and to borrow from another military theme, a "day that will live in infamy". Dustin Joshua Wald is 4lbs, 8oz and he is currently in the NICU. He is breathing on his own, but due to the aforementioned duodenal atreisa is getting sugar solution intravenously and has tube in his stomach with suction serving as his digestive system (in place his own malfunctioning one).

He is likely to have a one time surgery for this Monday and have an approximately 2 week recovery period where he needs to learn how to eat and digest on his own before he can discharged from the hospital. Lisa is likely to be discharged this coming Monday.

All in all, Lisa and Dustin are doing great - PRAISE THE LORD!

We are needless to say - very tired. Signing off for now.

444 Hours and Counting

2008-07-16T16:52:00.000-07:00

We're back from the beach (only went for long weekend) and all is OK with Lisa and Dustin. We had fun and Lisa and Zach really liked the lazy river at the hotel where we stayed. The pool of course makes Lisa feel less burden on her back.

For those inclined, you can now subscribe to this blog as an RSS feed. Simply find the Subscribe To "DJ Is On The Way" menu on the right lower panel, and choose whether to subscribe to posts (and which RSS reader you want to use) and comments (also can choose RSS reader).

Talk to you soon....

Headin' to the Beach

2008-07-10T15:08:00.000-07:00

Lisa's procedure went OK - although they kept her in hospital overnight for 2 nights for monitoring....just precautionary. Mom and Dustin doing fine. Doctors have indicated it's OK to go to Myrtle Beach...so we are heading on our way.

Thanks for your prayers!

Tues 08JUL @3:00PM EDT: Lisa to Have Excess Amniotic Fluid Drained

2008-07-06T09:19:00.001-07:00

Because little Dustin has been found to have Duodenal atresia, Lisa has been retaining an excessive amount of amniotic fluid, a condition called Polyhydramnios. This of course (as we have indicated in previous posts) is causing a great amount of discomfort. To address this, we have an appointment at Duke Hospital where the doctors will drain the excess fluid. This must be done in the hospital because there is some risk the procedure may cause early labor.

We certainly ask for prayers that this procedure go smoothly and that no complications (such as early labor) arise. We also ask for prayers that the recovery go well and that we can head to Myrtle Beach as planned this Thursday evening (about 3.5 hr drive from Raleigh).

Thanks again for all of your prayers.
Rob and Lisa

"D" Day - August 4, 2008

2008-06-24T18:36:00.000-07:00

D Day is near...the battlefield commanders have planned, planned and planned various strategies, ultimately settling on a "C Section" - a very difficult military manuever with an objective of rescuing Dustin from his 9 month imprisonment inside the fortress Lisa. Ironically, Lisa can't wait to release Dustin (can you believe that!).

Lisa is still retaining amniotic fluid (this one of the common complications for DS babies - read about it here). The heretofore mentioned back brace is helping somewhat but sleep is still an issue. Lisa is looking at procedure to drain this fluid before we go to Myrtle Beach for a long weekend 10JUL.

We seek prayers for:
- Preparation for birth; both logistically and emotionally
- Sleep for Lisa and relief from pain/discomfort regarding retention of fluid
- Peace about everything

Thanks for your prayers and we love you all!

Rob and Lisa

Zach - "Born Ready"!

2008-06-14T12:05:00.000-07:00

Zach (6 on Sep. 7) is ready - for so many things, including Dustin. All he says is "I'm gonna do this for baby Dustin", and "I'm gonna do that for baby Dustin"; or "I'm gonna be 11 when Dustin is 5".

Zach is of course a huge blessing, and he is blessed with a huge heart for others. He's playing t-ball, and enjoying his "senior" year in pre-K, as he will start Kindergarten this Fall.

We certainly pray that we can not only be who Dustin needs us to be, but also who Zach needs us to be. In Gods hands...

Lisa is sleeping somewhat better - still not great. She has purchased a back brace and we are hoping this is a comfort.

It's Lisa's Birthday

2008-06-09T12:37:00.000-07:00

Today is Lisa's birthday and Zach and I have started a new tradition of making a home-made birthday song video. I've never been able to pull off the Cary Grant, smooth romantic style. I have, however, no problem being really cheesy - watch the video and you be the judge (although I know where you'll land on this one).

Lisa really loves 80s music....

More than anything Lisa would like restful sleep for her birthday. Please continue to pray for her rest.

Thanks, Rob

Light For My Path

2008-06-07T18:31:00.000-07:00

Since we have told people that Dustin is expected to have DS, a common question we get is "how are you doing?" Of course, this covers not only the "day-to-day" friendly version, but also a query into how we are really doing, if you know what we mean.

This is a tough question because it's really hard to place ourselves in a position where we have a complete understanding of what it will be like. For starters, we won't know severity of Dustin's case until after his birth (expected around mid August). Of course we know this will be life changing - beyond just having another child - as well difficult, stressful (for all involved, including us, Dustin, Zach, friends, family), etc. Looking at it from this perspective, it is easy to understand how one can answer a simple query into how we are doing with either "kind of freaked out" or "all over the map".

Right now, however, we are at peace - and we are thankful for the peace we have and for all you who are praying for us, because for sure we can feel your prayers.

Of course, we're learning as much as we can about DS. This includes talking to as many people as possible who have experience with it, mostly parents of kids with DS - friends of friends, friends of family, and the local support group (TDSN). The stories and experiences we hear are truly amazing and very encouraging.

We're reading as well. Rob has read Uncommon Fathers, a collection of essays written by fathers of kids with disabilities. Lisa has read tons of material provided by TDSN, and is currently reading Babies with Down Syndrome. A recent read of Lisa's (and gift from our very supportive neighbor Sarah) has been Expecting Adam, "an autobiographical tale of an academically oriented Harvard couple who conceive a baby with Down Syndrome and decide to carry him to term".

While we must not delude ourselves that this saga won't be very difficult, we nonetheless remain encouraged. We continue to hear over and over again how Dustin will be "more like us than different". And once again, we trust in Him. Psalm 119:105 says,

"Your word is a lamp to my feet and a light for my path."

We do have an additional prayer request. Please pray for Lisa to get sleep. She is retaining amniotic fluid and this is causing back pain and other discomfort, making it particularly hard to sleep for long stretches of time.

Thanks again for your prayers and talk to you soon.

What's In a Name?

2008-05-29T20:37:00.000-07:00

Lisa knew that Rob really wanted to find out if the baby was a boy or a girl and it did not matter to Lisa, so as soon as we could find out, we did - and as we have already told you, it's a boy!

We also felt, more so than ever, that it was important to give our baby boy a name as early as possible. We wanted to bestow upon this baby boy a name that would both remind us of something very joyful, and also remind us that God has amazing plans for this boy, and we should remain hopeful and focused on the great things this boy will achieve.

You probably know that we LOVE the Red Sox. Our eight years (1999-2007) in Boston were amazing and we came to love the Sox and believe it or not, Lisa is as rabid a fan as Rob! Last year, the Sox started a rookie 2nd baseman - Dustin Pedroia. "Pedie" as he is lovingly referred to within the clubhouse, is 5'9''. As baseball players go, this guy does not stack up well size-wise and of course being a rookie, there was some trepidation within Red Sox Nation that he could fill the shoes of Mark Loretta. These fears were fed when Pedie started the 2007 season VERY slowly. Of course, we all know how the story ended with Dustin Pedroia becoming AL Rookie of the Year (and also playing a key role in the Sox winning it all).

So, our baby boy's first name is Dustin - reminding us of our joy watching the Red Sox and also reminding us how great the little guys can become, even when the odds are long.

We also wanted to name our baby after a great biblical figure, so we chose Joshua as his middle name. Joshua, according to some scholars, "..was [not only] a superb military man, he was also a great soldier of Almighty God. He led Israel with excellence in both their wars and their worship, something even the greatest of generals of history could never do." For us, Joshua was a man of great faith, having led the Jews to the promised land. In Numbers 14:6-8, it says Joshua said to the Israelites,

"[T]he land we passed through and explored is exceedingly good.

If the LORD is pleased with us, he will lead us into that land, a land flowing with milk and honey, and will give it to us."

Despite the great trials and the lack of faith by so many who accompanied him during the Exodus out of Egypt, Joshua represents to us someone who holds true to his faith that God will provide, despite the challenges we may face.

It is with great excitement that we enter the final 8-10 weeks of Lisa's pregnancy.

Hence the name of this blog, "Dustin Joshua (DJ) Is On The Way".

DJ Is On The Way - Inaugural Post

2008-05-25T16:14:00.000-07:00

Recently, we were told that the baby boy we are expecting in August is expected to have Down Syndrome (DS). Of course, this was a lot for us as parents to process, as we have experienced a range of emotions from sadness, to anxiety and fear.

However, having had time to let this "set in", we are as joyful as any expectant parents would be. The fear and anxiety are still lurking in the background, but we remain focused on the big day when our new little baby boy will join the world.

Our primary source of joy is our God, who has made us, and who has plans for each of us, including people with DS and parents of kids with DS.

As David has written in Psalm 139:13

"For you created my inmost being;
you knit me together in my mother's womb."

And again, in Psalm 139:16

"All the days ordained for me
were written in your book
before one of them came to be."

We have been blessed as well with brothers and sisters in Christ who have been praying for us - constantly. People have asked us, "how can we help and how can we pray for you?"

This question is the reason for this blog. Undoubtedly, our situation is and will remain very fluid and our prayer needs/requests will of course reflect this. With so much family and friends praying for us, we thought this blog would be the best way for people to stay connected with our situation and our prayer needs.

Right now, we ask for prayers for
- a miracle of healing that God will bring us a healthy baby boy free of any issues; of course, if this is His will.
- peace
- strength
- that God prepare us; if it is God's will that our baby boy be born with DS we just ask for prayer that He prepare us to be who this boy needs us to be

We do of course thank you for your prayers and we praise Him because we do feel your prayers and we praise him for the peace and strength your prayers have brought us.

We love all of you and thank you for your willingness to walk alongside us with this journey.

Rob and Lisa