Merry Christmas and Happy Hanukkah

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

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

Check 'em out!

Last Man Standing

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

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

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

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

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

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

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

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

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

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!?

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

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

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.