New Camera - See Pictures Link

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"

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

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!

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

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?

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

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

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!

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?)

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

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

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

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

We continue to add pictures here.

Lisa Discharged...Dustin Off of Ventilator

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

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

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

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

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

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

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

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

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"!

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

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

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?

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

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