Showing posts with label therapy. Show all posts
Showing posts with label therapy. Show all posts

Tuesday, September 8, 2009

Surgery was Postponed!

It's finally time to share our top secret news. Grab a drink and settle in for a long post. I wasn't going to go into much detail, but we realized that some of this information may help some of those families going through the same feeding problems. If you want the short version, scroll to the bottom of the post.

Does the number 24 mean anything to you? Well, to us it represents the number of days since Baby C has puked. Wait?!?? Did you read that correctly? Yes, you did ~ over 3 weeks! (That would be the clues of Carter eating w/o a bib on and the photo of the bib in the trash can) We met with Dr. H, Carter's Surgeon on August 14 and after listening to him describe the surgery, apparently Baby C thought it might be easier to make some changes. So, he puked at the 9am feed on Saturday, August 15 and that was it. The last puke, gag, sign of reflux. We've been withholding this information until now for fear of jinxing it until we met with his Doctors again at Duke today.

Your next question (at least for those of you dealing with reflux) is probably, "How did you do it?" Well, a higher power intervened 3-4 weeks ago when Baby C caught a stomach bug and was puking TONS. He became very dehydrated and we ended up putting him on just Pedialyte for 24 hours via the NG tube. And he stopped puking. We slowly started working up to 1/2 Pedialyte and 1/2 Prosobee (formula) and he still wasn't puking. We realized that all this time we've been thinking that it was high volumes that were bothering him, so we had reduced volumes and increased calories (he was up to 29 kcal/oz). But, for Baby C it seems that the high caloric concentration was THE thing that was aggravating his gut and thus, causing the projectile vomiting. (something called osmolarity, I believe) After a long process, we're back to 100% Prosobee formula in his feeds, but at a much lower calorie concentration (22 kcal/oz) and he is tolerating it!!!! I honestly never believed that I'd type those words.

As soon as the puking stopped, Baby C picked right up on eating by mouth. Brad & I have long suspected that the vomiting was contributing to his refusal to eat. He started out 2 weeks ago, taking about 2 ounces of whole milk (from a sippy) + 1-2 oz. of pureed foods a day. Each day, he took more and more. This past week, we've been able to skip several NG feeds because Baby C drank MORE than we would have fed him via the tube. His best 2 days this week, he drank 16 ounces of milk/pediasure mixture and ate 4 ounces of pureed fruit + 4 ounces of yogurt. He's also eating organic puffs like a champ! He LOVES them.

One of the biggest achievements is that he is now getting hungry and becomes excited when he sees the food. Especially puffs. He sits in his high chair and jumps up & down, waving his arms when he sees the container. This is the same kid who just a few weeks ago would begin gagging as soon as you placed him in his high chair.

We had a long day at Duke today for his Special Infant Care Clinic appointment, Developmental Testing, a meeting for the CDH/Genetics study at Duke, and Pre-Op. They were very pleased with his growth; his weight is in the 22%. Baby C's surgery was scheduled for tomorrow (9/9/09), so we were very anxious to share this news with his Doctors. We packed our bags last night, prepared to be gone for 1-2 weeks. Little did we know, when we shared this latest news today, his Doctor replied "I can't justify putting him through the G-tube surgery at this point." WOOOO HOOOO!!!!! There's nothing like waiting until the last minute...in true Baby C fashion.

We had to come up with a new plan in light of Baby C changing the game on us. They are giving him 2 months to wean off the NG tube. We'll start by removing all day-time NG feeds (he gets 2 over night while he's sleeping) and see what progress he makes over a few weeks. If he takes in enough by mouth, then we'll pull the NG tube all together and see what he does. If he can't do this, then we will be, with 100% certainty, getting a G-tube. No ifs, ands, or buts. Because he's doing so well, they also want us introducing all kinds of foods to him. He doesn't seem to have an aversion to any type of textures, as he's been eating chunky veggies, pasta, meat, etc. Today, he even ate pizza (what else do you expect -- Riley ate pizza not long ago).

Baby C was also scheduled for Developmental Testing with a Child Psychologist. He is
age appropriate in cognitive skills; expressive & receptive language; and fine motor skills. He is moderately impaired in gross motor (crawling; standing; transfers). This was fantastic news because it means that he's caught up from all the lost time he was on ECMO and in the hospital. The gross motor skills impairment is to be expected because of the abdominal surgery, but he's quickly catching up.

He will still need to have the abdominal hernia repaired, but it's something that can wait. The repair will have to be done using a patch, so the older Baby C when we have it done, the better it will be for him.

Thank you so much for all of your support, happy thoughts, finger crossing (especially from Jack), and prayers. They are powerful and are working. Keep them coming, PLEASE. We'd love to be able to pull that old tube and ride off into the proverbial sunset.

For those of you keeping count, this makes the 3rd hospitalization that Baby C has avoided. What a super baby.

In Short:
  • Baby C has not puked in over 3 weeks!
  • Baby C is eating and drinking a TON of food and making progress every day
  • The Doctors cancelled the G-tube surgery because of this progress & his weight gain
  • Baby C has 2 months to prove what he can do ~ if he can't lose the NG tube by then, we will be absolutely, positively getting a G-tube
  • His Developmental Testing went very well ~ he's age appropriate
  • Your prayers, positive thoughts and crossing of fingers worked, so please, please keep them coming

We also want to remind all of you that we are now in "winter lockdown" (or hibernation, if you prefer). At the advice of Duke, Baby C will not be getting the H1N1 vaccination (too risky b/c it's not been sufficiently tested), so he'll be highly susceptible to catching it. He also has not yet been approved for the RSV shots this winter. This all makes for a very dangerous cold/flu/RSV season for him. If you have been sick, have been around anyone sick, or even think you might be coming down with something, please DO NOT VISIT us or Baby C. We can't take the risk. Now, without the use of the feeding tube, if he gets sick again, we won't be able to pump Pedialyte in and he WILL be admitted to Duke. We know he looks very healthy, but keep in mind that his lungs are not normal. The remain underdeveloped and can't handle things like a simple cold or the flu like most people can. Your sniffles can land him back in the Intensive Care Unit.


Tuesday, August 25, 2009

What's Up?

I haven't really done an update on Baby C lately that didn't involve Gtubes discussions, so I thought it was about time. He's been giving us many gray hairs lately with 2 recent near-hospitalizations. As much as we hate the feeding tube, it has saved us in that he was dehydrated both times (once to a tummy virus + lots of vomiting and once to a bad reaction to the HepB vaccine + 102F fever). Instead of having to drive to Duke and have him in the hospital for several days to receive IV fluids, we were able to pump lots of Pedialyte into his NG tube (he would NEVER have taken the amounts he needed by mouth) and he bounced back quickly. He even managed to do get through all of this without losing any weight! He's still in the 25% for BMI.

C had his PT re-evaluation today. I can't believe he's already been going to therapy for 6 months. The re-eval is to look back at the goals they had set, what he's accomplished, and set new goals. He's doing very well and is on target for his age with the exception of two things: (1) pulling to a stand from sitting; and (2) cruising. His neck is still a little tight (a result of ECMO) so we have some stretching to do. She said that we will continue with weekly visits until after his surgery so she can help him bounce back more quickly and then we'll transition to once every other week.

Well, wouldn't you know it. Our little stinker came home from PT and while sitting in front of his crib playing, grabbed the railing, pulled right up to a standing position and then took THREE steps to peek around the head of the crib! I guess that means he's on target for his age now :)

He has his OT (feeding) re-eval next week, and I'm really excited to see how far he's come. When the progress is so slow, it's hard to step out of the box and see the whole picture. Being able to look back objectively, with goals and accomplishments, really shows us how much C has done since he's been home.

We have some great news in the feeding and reflux/puking department, but I'm so scared of jinxing it that I can't post it quite yet. Just know that he's a completely different child and it's a whole new world for us! We have made some big changes that resulted in over-night improvement for Baby C. He's also developed the attitude of "I can do it" and wants to help with everything. Even though he makes a big mess when he does it, I don't care. I told him it's ok if we have carrots on our ceilings and milk on the floor, as long as some of it ends up in his mouth. I certainly don't hear Lucy complaining about it. I'll let the pictures below give you a clue, but they certainly don't tell the whole story (and yes, that is a jar of applesauce that's almost empty)!!!! (oh gosh. I'm so scared to even press "Publish Post" for fear that as soon as I do, our nightmare will return)

I was recently discussing the feeding nightmare with another CDH mom and we were agreeing that our moods are directly related to how feeding is going. When our kids have good feeding days, it results in putting us in a great mood. The converse is also true and I am in the worst mood on days that he doesn't do well. I could totally chart my mood swings and Carter's eating habits and they'd fall on the same curve. I'm sure that all good parents feel this no matter what your child is dealing with.

We've also been wondering lately how something so small can get into SO MUCH? He's obsessed with crawling to the TV cabinet and opening/closing the sliding doors; he crawls all over the house from room-to-room like he's on a mission; he likes to play in the kitchen cabinets; he likes to crawl on top of the A/C vents and let the air blow in his face while he laughs. Today, I was peacefully sleeping and I was abruptly awoken by a piercing alarm, followed by a piercing screaming. I jumped up and went out in the hall to find Brad holding a crying Baby C in one arm and our Carbon Monoxide alarm in the other! Carter had discovered the alarm and pulled it right off the wall, making it alarm b/c it was no longer connected to its power source. Ahh....life with a toddler begins.






Tuesday, June 23, 2009

Honey Bear

  • After seeing the post about the monkey drinking from a "real" straw, his OT told us it's not such a great idea, which we knew but I guess we just got ahead of ourselves with excitement. She is correct in her reasoning about why to avoid a "real" straw at this point. She suggested a therapy squeeze bottle or "Honey Bear" so that we can control the amount of liquid he takes in. This keeps him from gagging on it, and in turn, completely refusing it like he has done with bottle, which would be devastating for his progress and for any hopes of losing the NG tube in the future. A Honey Bear is just what you think, the plastic bear bottle that honey comes in, with flexible tubing coming out of the top. Luckily, we have wonderful friends who had to use Honey Bear with their son, so Monica & James passed along Connor's bears to us. THANK YOU! We got them today and they were a huge success as you can see below!
  • He also had OT and PT today, and although he had not taken his morning nap, he did well. He did a few combat crawling moves for his PT and he ate a lot of green peas for Mrs. Leah. He also drank quite a bit from the squeeze bottle.
  • I just bought a new camera, so you may see a lot of pics in the coming weeks as I play around with it. The last photos are of a doe that was in the neighbor's yard today. I took these from upstairs, through a screened window, so they aren't very clear. Poor Lucy wanted to play with her so badly!



























































Tuesday, June 16, 2009

Little Green Monsters

C's making very quick progress on sitting up and building up strength in his upper body. Last week, at PT, he could only sit unsupported for 18 seconds. Today, at PT, he sat unsupported for more than THREE MINUTES! His PT even remarked how great it is that he has a new skill each time she sees him. He's also improving on transitions ~ for example, transitioning from sitting, to leaning on his hands over to one side, to sliding down onto his belly.


Last week, we accidentally discovered a new skill. My Dad brought me a big ol' sweet tea from McD's (yum). While I was holding it in one hand and C with the other arm, C reached out and grabbed my drink and straw. I assumed he wanted to munch on the straw because he's teething (top canines), but when he put the straw in his mouth, my Dad and I watched in amazement as tea moved up and down in the straw! He was actually trying to suck drink from the straw!!!! I didn't let him drink any of it because I didn't want him to get scared by the large bolus he would have gotten.
We shared this info with his OT and today, she gave C a squeeze bottle with a flexible straw-type tube and he drank from it! It's easier to control the flow of liquid with this type of bottle, which we must be cautious of because if he chokes or gags on too much liquid, he may reject this like he's done with the bottle. Miss Leah also presented C with an open cup, and he drank a little from that. He didn't take much measurable volume, but this is still a great development. We had a repeat performance at home with watered-down juice tonight. We had a repeat performance at home tonight. WOW! Big step in the right direction! **happy dance**
He's improving on his pureed food skills, too. He definitely likes the home-made foods better than store-bought foods. When we present a food he grabs onto both sides of the tray, lunges forward, mouth wide open like a baby bird, and chomps on the spoon. If it's a food he likes (pears, apples, sweet peas, sweet potatoes) he'll come back for more. If he doesn't like it, he clamps his mouth closed and is D.O.N.E. We have to be careful not to leave the spoon in his mouth too long or he gags on it, but I do think his gag reflex is improving. He's taking in around 2 tablespoons at a sitting, and then I think he gets bored and/or overstimulated. He doesn't gag or cry or fuss when he's had enough, he just completely ignores you. If you continue to try to feed him, he turns his face all the way to the left side and presses his face into the chair as if he's saying, "if I can't see you, you can't see me!" And if Lucy comes in anytime during the feed, you can forget it because he's more interested in her than whatever it is you are doing!

Mmmmm....Sweet Peas (aka: little green monsters)!

We spoke with Dr. Wonderful today and discussed adding Duo-cal, or another calorie additive to his pureed foods, in order to maximize his caloric intake. She's also going to look into what high-calorie liquids we can try with the straw because water and watered-down juice are sort of a waste for C. When every calorie counts, water is an "empty" food that takes up room in his little tummy and doesn't give any nutrition. He's not quite old enough for Pediasure or milk-based products, but we're willing to get creative!


Saturday, May 23, 2009

Weekend Fun...and it's only Saturday!

I'll start off with a short bit of feeding updates:

  • Carter's daily volume intake is now averaging 930mLs (31 ounces) at 26 cal/oz (regular formula is 20 cal/oz); we'll probably begin to increase the calories to 27 cal/oz next week
  • We changed the NG tube yesterday and today, during a puke session, it launched out of his body like a missile~that's why some of these pics are tube-free
  • His OT started him on Biter Biscuits/Teething Biscuits this past week and he's doing well with them; he certainly doesn't have an aversion to putting them in his mouth, but I don't think he really knows what to do with them (yes, Alison, Chris & Davis, he's waiting for those sweets you keep telling him about)
  • The reflux seems to be bothering him more in the past few days, so it's likely he's gained weight and it's time for another weight adjustment; we'll find out later this week

Now for lots and lots of pictures:

"Hey Lucy...why don't you eat this Biter Biscuit and we'll pretend that I actually ate it."

Lucy makes a perfect 30 degree incline for reducing reflux

Carter's PJs from his California Girlfriend

"La, la, la...I'm just sitting here. I promise I'm not about to do anything..."
"...HA! GOTCHA!!!!"
"mmmm...love that camera strap"
Goofing around with Daddy!
We didn't want to be left out
This week, I found Carter doing this (in the video below) just after a face-licking from Lucy. I don't know if he just coincidentally started sucking his upper lip or is mimicking Lucy, but it's pretty funny to watch.



And here's more giggles for those giggle-lovers out there (sorry it's sideways--I keep forgetting that I can't rotate the videos)

Wednesday, April 29, 2009

Laughing, eating, and trying to crawl

I can't keep up with Carter--I think he does something new every day! He's almost 7 months old and we are finding that he gets bored VERY easily now. Keeping him entertained all day is getting very interesting, but also so much fun! Oh, and he's developing quite a little attitude, especially when you take something away from him that he wants. He must still think he's in the NICU and has those Nurses wrapped around his little finger!

This is what he does when you say "Cheese!"

We still go to see Mrs. Leah (OT) twice a week. One day she works on PO feeding with the bottle and formula and the other day we work on PO feeding with pureed solids. She also sprinkles in lots of work on rolling, sitting, strength, etc. Today, Carter showed off for her and took 10 bites of sweet potato! She seems very encouraged with this new development and we're hoping this will continue to improve and will also be the bridge we need to teach Carter what to do when he gets liquids in his mouth so he can move on to a sippy cup. He's also improving on his trunk strength and we're hoping he'll be able to sit on his own soon. He's started standing a lot, especially when we try to sit him down. He'll lock his legs and stand up. Leah and Carter's PT said this is a big No-No for Carter, as are Jumpers and Bouncers. Essentially he's standing b/c it's easy and sitting is hard work--standing up and locking his body allows him to avoid "working." Little stinker is outsmarting us at each step!


After working with Mrs. Leah, Carter came home and tried out crawling. Of course, he won't do this when he's in therapy! He's funny because he can't quite coordinate himself and his arms aren't strong enough to support him for very long, so he gets mad. Here are some pictures of his attempt to crawl.

My failed attempt to capture the tooth on camera!
This is what happened when I was trying to take pictures...someone grabbed the camera strap!


I could listen to this laugh all day long!


Tuesday, April 7, 2009

Happy 6 Months Monkey

Today is Carter's half-a-year Birthday! Where did it all go???

He had a big day. It all began with UNC winning the National Title--I mean, what else could you ask for? He went to OT today to see Mrs. Leah and is making good progress. Then, he went to the pediatrician's office to get his last RSV shot for the season. What a fun way to spend your birthday :) Luckily, he won't remember it (until he reads about it in his blog book).

The big news is that he now weighs 6.75 kilos (14 lbs, 14 ounces). That's a 7 ounce gain from last week! We started adding just a little rice cereal (1/2 tsp. per oz.) to the bottles he takes PO at night and those added calories have helped bring on the weight gain.

I'm becoming quite the pro at getting things done around the house while wearing my newest "accessory"= Carter! I was running cold water in the sink today to fill up Lucy's bowl while wearing Carter and he reached right into the stream of water and loved it. I turned the water on later to show Brad and he reached right out for it again. While this may seem trivial, for a kid with sensory issues, this is HUGE!

Saturday, March 14, 2009

Just a quick update & some pictures

Carter is still a very happy baby. He has recently discovered that his feet are very cool things to play with. He's "talking" a lot more and laughs with his whole body. He's rolling all over the place, and is tolerating a little more time on his tummy. He moves his hands with much more purpose, meaning he reaches for toys, grasps them and brings them in to his body (mostly they go straight into his mouth); it also means he reaches for and pulls my hair when I'm close to him!



We continue to struggle with Carter's feeds and vomiting. Dr. M and Leah (OT) are working very hard with us to get it resolved. He's on a new medicine that we think is working very well--it's cut the vomiting from 6x a day to 3x a day and he's more comfortable when he eats. We see Leah 2x a week and Carter also gets Craniosacral Therapy (CST) 1x a week. After 4 looooooooooooong weeks, we had the NG tube put back in as you will see in the pictures. We'll go back to Duke for a check-up with the Clinic soon, so I'm anxious to see what they have to say. On a good note, we have FINALLY been able to transition him from the stupid Nuk nipple to the Dr. Brown's.



I couldn't decide which pictures to post, so I put quite a few into a video. You might notice that he doesn't have any ECU stuff (hint, hint).







Thursday, February 26, 2009

Duke Follow-Up 2/25/09

We had a follow-up day at Duke with Dr. H, Carter's surgeon and Nephrology (to check his kidneys). Dr. H thinks he is doing very well. His new conclusion is that the "pouch" on his left side is an abdominal hernia because he can feel bowels poking through. He does not want to discuss the option of a surgical repair for at least 6 months, until Carter is bigger and stronger. I hate the thought of another surgery. Riley will be returning to Duke in 6 months to see Dr. H for another surgery, so maybe we can plan for them to be roomies again!




Carter's blood pressure is still running high, so we're staying on the Clonidine for now. We'll see them again for a follow-up in 3 months in the hopes that he outgrows the blood pressure issues. He had a kidney u/s which showed left hydronephrosis (enlarged left kidney). He also had a cystogram/voiding to check for reflux from his bladder back into his kidneys. We were so proud of him during this test b/c he had to be stripped naked, taped to a board with his arms over his head and they inserted a catheter to drain the urine from his bladder. Then, contrast was used to fill his bladder and they took repeated xrays to look for reflux. Thankfully, none was found and his kidneys and bladder look to be working well! Whew! When discharged, he had a grade 1-2 reflux, so we're so happy he's outgrown it. He looked so pitiful strapped to the table, but he didn't even cry. I can't believe how much he puts up with and just goes right along with it.




He's still vomiting a lot and the past few days, it's been with almost every feed. Dr. H said that the culprit could actually be the Reglan he's on for reflux b/c it increases the rate food moves through the stomach, but it doesn't actually make the stomach empty the correct way. We have an email in to Dr. Malcolm to discuss a trial of no Reglan.




OT is going well. Leah is fantastic and she's been able to get him to take about 30 mLs while awake. She has lots of great ideas for getting him to eat and we'll soon be trying rice cereal, with the hope that he'll take solids from a spoon better than liquids from a bottle.




PT says he's right on track developmentally. He's sitting up with support, holding his head up, rolling over, grasping things, bringing things mid-line and to his mouth, laughs and recognizes familiar faces, and has very good head control. He's also "talking" up a storm with baby babbles.

Friday, January 23, 2009

Making A Deal With The Daddy

We've been struggling with the feeding tube issue and had decided to meet with the surgeon on Thursday to get his point of view, more information, and possibly a date for the surgery. He informed me that we have 3 surgical choices: (1) a G-tube; (2) a G-tube + Nissen; or (3) a J-tube. All them present their own risks/benefits but any abdominal surgery for Carter will be very risky since he's already had numerous surgeries (due to scar tissue, etc.). We were also hoping that we could have Carter's circumcision done during the surgery since he'll be under anesthesia and will have pain meds.

The night prior to this meeting (Wed), Brad had a feeding discussion with Carter and told him if he would just start eating from the bottle, we wouldn't have the "procedure" done during the surgery. I couldn't believe we had resorted to bargaining with a 3 month old! Well, guess what? We called the following morning to check on Carter and Wonder-Nurse Jennifer had gotten him to take 20 ccs from a BOTTLE at TWO different feeds! We were in complete disbelief. She's such a great nurse that she called us later that morning to go over her magic technique because she would not be back at work for a week and she wanted to make sure we knew exactly what she'd done. We know that Carter really didn't understand what his Daddy told him, but what a story. We'll maintain some sense of privacy for Carter and won't ever reveal our final decision concerning the "procedure."

Brad had to work Thursday, so I went up to try my hand at feeding him. Nurse Linda showed me the magic technique and he took 28 ccs in 20 minutes at his noon feed! It was so amazing to watch him latch on to the bottle and eat like a normal baby. He probably would have taken more, but he ended up falling asleep. It had been a loooong morning with lots of tests and play time, so we decided to let him nap and not push him.

Back to the meeting with the surgeon at 2:00pm. After discussing the options, risks, etc. it went something like this:
  • Dr. H "I understand we're thinking of a surgical feeding tube because Carter won't tolerate PO feeding, right?"
  • Me "Well...(chuckle)...never mind. I'm not even going to tell you because it's probably just a fluke"
  • Dr. H "What?"
  • Me "Carter decided last night to start eating! He took 20 ccs twice overnight and just took 28ccs at noon."
  • A big smile from Dr. H
  • At this point, we decided to delay the decision and give Carter some time. If he begins to take more PO feeds, then we might not need a feeding tube, but if it was a fluke, we'd schedule a surgery next week. Dr. H said we could reassess the situation next Wednesday.
At 6pm Thursday, he took about 5 ccs but wasn't very interested. I left to go to work and Brad went back to Duke--waving as we passed each other on the road. Thursday night, Brad was able to get Carter to take 40 ccs (that's half of what he eats at each feed)! He slept most of the night, so his nurse wasn't able to make much progress on PO feeds overnight. This is what today (Friday) looked like:
  • 9am -- 20 ccs
  • 3pm -- 30 ccs
  • 6pm -- 20 ccs
  • 9pm....drum roll please....80 ccs! That's his ENTIRE feeding amount! What's even more promising is that he did this in 35 minutes, including time for burping. Way to go Brad--you hold the record for now.

If Carter continues on this trend, then we might be hearing the "H" word soon. We're trying not to get ahead of ourselves, remembering that Carter runs the show. There are also lots of kinks to work out, like increasing his caloric intake either with increased volumes or increased additives, neither of which he's been able to tolerate in the past. He now weighs 11.5 pounds and is 24 1/2 inches long, but he must gain weight at a faster pace to fight off infections, grow lung tissue, etc.

The funny thing about the progress he's made is that the feeding technique is very, very specific. It requires a great deal of consistency, so Brad and I try to be up there for as many feeds as possible. If it's not done just right, Carter won't take the bottle. He's such a high maintenance kid! Some of the things we've found that work are side lying on his left facing outward, warm milk, supporting his chin, and swaddling just his arms. We have a feeling that once we get him home and limit his "feeders" to only Brad and myself, he'll make even more progress.

For the benefit of other families dealing with feeding issues, we also wanted to mention the success we've seen with his Occupational Therapist applying the Wilbarger Protocol. This should ONLY be done under the direction of an OT because it has dangerous consequences if not done correctly -- please do NOT look it up on the Internet and try it at home without a therapist's direction. It's a form of sensory integration therapy, which involves brushing the skin and joint compressions. The idea is that it helps to organize the sensory system and to increase focus and alertness. Although it's only been done a few times, it is greatly helping Carter with his sensory defensiveness. Part of Carter's eating puzzle involves his sensory defensiveness, so progress with one improves the other.

Please say lots of prayers that he stays interested in drinking from the bottle. There are many people, not just from Duke, who have played a role in trying to figure out Carter's puzzle and we thank you. A specific 'shout out' to Kelly Dreyer, OTR at Cincinnati Children's Hospital and Leah Hanson, OTR at JZ Mann in Jacksonville, NC for all of your help. We don't know where we'd be without you two!


Make your own Countdown Clocks