DPoD - Big C update

We visited CHEO this morning for Big C's appointment with his GI specialist. He has put on a little weight (he's weighing in at 22.5 lbs) and has grown (though we didn't grab the measurement for that). Overall he's doing well in terms of his diet and his eating ability - he's a very hungry boy - and they think he's doing well. They've advised keeping him on his current dose of medication until about Labour Day, then reducing to every other day until Christmas, and then going off the meds altogether. All in all it was good news, however he does have quite the angry little bum rash right now. The zinc, paper diapers and some air (read 'no-diaper-at-all time') have made some improvement and should serve him well.

As you can see, he's a happy little camper.

Big C's Check up at CHEO

Here's a rundown of what was said this morning.

Big C was weighed at 9.435 kilograms (20.75 lbs) and measured for height (he's grown 4 cm or an inch and a half in the past 2 months). We went in and met with Dr. Barkey and she said that the Barium swallow showed a normal esophagus and normal stomach . Both sphincters are allowing emptying well. It isn't 100% diagnostic however since they can't be sure he was refluxing at the time.

She asked about the prevacid delivery (we're doing it about 5:30 am with some difficulty), how his sleeping is (good overnight and good naps), his activity level (it was obvious in the room), any signs of eczema (none), fever (none) and if he was still breastfeeding (twice daily at about 6:10 am and 9 pm). She advised that we keep on the Prevacid for the next 3 months, but after this current bottle of the suspension to switch to the capsule. 1/2 of a 15 mg capsule once per day for the next 3 months, then the 4th month would be 1/2 a 15 mg capsule every other day.

We will meet with her again at the conclusion of that 4th month (end of July). The capsule can be mixed with yogurt (which he loves) or applesauce. We are to track any spit ups on a wall calendar and bring that with us to the July appointment.

As for any regression he would demonstrate this through rejecting food his currently eats or thoroughly rejecting new textures. If there is any regression with 7.5 mg then we should go back up to the 10 mg, however she is optimistic considering how much time he's spending upright.

In terms of a potential dairy allergy, we are to look for loose stools (looser than what he's been having right now) and blood. His growth has been spectaular (they measued height 3 times) so keep up the dairy in his diet. HIs energy and activity are high, which are signs that the dairy is having a negligible effect.

His esophagus will only get longer in the next few months and his upright walking is definitely going to contribute positively to him "walking away" from this. This should peak towards 15 months (May). She believes that if all looks good in July that we can discontinue Prevacid for August, but we can discuss that then.

She doesn't expect any regression and feels that Big C is doing very well. The nurses just loved him and both boys were well behaved. The only follow-up that we have on the horizon is with her in July since he's not involved in any other studies.

Big C's Barium Swallow, the results are good!

Today was Big C’s barium swallow. This is a test where they fill him up with a contrast medium and take images of his digestive system to make sure that it is working properly and also constructed properly. He was supposed to fast from midnight last night but we snuck him to the breast at 3 am just to give him a chance. He took the lack of food this morning pretty well. We got to the hospital and they got us in right away. He put on the little gown and we went in to get the test done.

Basically he had to take a bottle of barium and drink it while lying on his back. He took a few swallows but really wasn’t a fan. Poor guy, he cried and cried. When that didn’t work, he screamed. The two technicians that were holding him down were very impressed with his strength and vocalisation of his objections-I don’t raise victims in my family!!!

Since he wouldn’t take the bottle they went and got a syringe to force it down his throat. I knew that he would throw up, and he did. Poor little guy. That just made him scream harder.
Finally he had enough in him that they just had to wait for it to clear out the bottom of his stomach so they could see the position of the bowel. It cleared, and Big C got cleaned up and then I finally got to comfort him. He nursed well, belched a couple of times, and ate a big snack on the way home.

Heather and I learned long ago that you make friends with the technicians and you get answers from them as soon as you can. I asked the tech how it went and what she saw. She said that everything looked good. It seems to all be in the right places and working properly.

Big C's BIG Day-Birthday, first steps, appointment at CHEO

If you have not been keeping up with the blog then this entry will get you up to date on Big C. In summary, today is his birthday, he took his first steps and he met with his Occupational Therapist.

Big C turns one today-HAPPY BIRTHDAY LITTLE MAN!!!

His day started off with a visit to the OT. His OT is really pleased with the way he is eating and has cancelled his barium eating study on the 15th. He still has his barium study on the 5th of March, though she says he really doesn't need it. He will meet with her again March 13.

She was pleased that he is asking for food though not as impressed that he asks by pointing and screeching. We are not having any success getting him to do the sign for "please" so we are going to start to try "more" and see how it goes.

She has helped us to recognise that our desire to put healthy options in front of him is a good desire to have, but not the priority right now. She explained that if he'll eat store bought chicken fingers, then feed him some chicken fingers along with other healthier foods that he doesn't like to eat. He'll finish the stuff that he likes and then move on to the other stuff, provided that we make sure he is still a little hungry. If you know my mother, you know that is a hard hurdle to jump over for me ; ) I think that both Monkey and Big C will be pleased that she (the OT) has suggested using pudding to try to teach him how to use the spoon!

Big C took his first steps (shhh, we have not told Daddy yet!). I caught some video of the second time that he did it. He is pretty pleased with himself.

Big C's new eating plan

Big C's occupational therapist {finally} called this afternoon. We had a good chat about his current eating patterns and how they can be changed. So, starting today, we have a new eating plan.

She says that part of the issue is that Big C has learned to rely on breast milk as a main food source and is never truly hungry. This is what babies with reflux do. So now he is to get on a schedule. He nurses first thing in the morning. An hour and half later he gets breakfast and liquids from a cup. That goes on through the day. He gets to eat every 1.5-2 hours with no snacking or grazing in between. I get to nurse him after he has eaten solids. The whole point of this is to make sure that he is hungry at mealtimes so that he will see the value in eating solids.

I am reserving judgement on this one. I am hesitant, but willing to give it a try. He has a new sippy cup with a straw and handles that he is quite good at getting fluid out of. He is permitted breast milk in the cup with meals, as long as he isn't relying on it.

She answered some of my questions about the barium swallow. Apparently he is supposed to be really, really hungry when he arrives for the procedure so that he'll eat what they put in front of him. Apparently they hide the barium in his food to get him to eat it. If he is hungry when he gets there, they figure he is more likely to eat it.

Big C's visit to CHEO

Well, I didn't manage to get a picture of Big C in his little hospital gown so you'll just have to take my word for it that it was really cute! I forgot the camera so I got some with my phone. I have NO IDEA how to get them off of my phone however.

The doctor looked at Big C's height, weight, attitude about the world, blood test results, appetite and gave the overall thought that we are making progress in a positive way. Because he is moving in a positive direction, she does not see any need to do the endoscopy at this time (yay, no surgery!).

So the nitty gritty. He has grown 2.5 cm and gained a *slight* amount of weight (from 8.2 Kg to 8.6 Kg). His blood work all came back normal. His hemoglobin is on the low end of normal so we will introduce some red meats and see if we can't bump that up.

He is still audibly refluxing. It isn't bothering him, but it is still happening. She suggested laying off of the sausages. I guess that means we all need to stop as he will just sit at the table, point at my sausage and yell if I try to eat it in front of him. She was pleased to hear that he would behave that way. His interest in food is a REALLY good sign. Of all of it, I think that it was the most important one of all to her.

He has a barium swallow on March 8 and a food study starting on March 15th. They are trying to wait until mid March to get him seen by the OTs, but I pushed to get it bumped up. If they can't bump it up, we'll hire one privately for him until we can be seen at CHEO.

Eating

Big C likes to eat! He is on his Prevacid and doing well. We can't tell how much weight he is putting on since getting on our scale with him in our arms isn't ovely accurate. We'll know more about that on Tuesday (Jan 16) when he has his next appointment at CHEO.

So far his favorite food is sausage. Yep, mild Italian sausage! When I was pg all I ate for breakfast was breakfast patties on an English muffin with processed cheese and gained 65 lbs! If all CHEO is looking for is weight gain then the sausages should take care of that in short order! He also likes chicken breaded with graham cracker crumbs, apples, and crackers. He'll eat vegetables if we grind them up and bread them with graham cracker crumbs. I was astonished to see the sheer volume of spinach that it takes to make a little "veggie finger". One finger is something like 3 servings of vegetables-excellent!

For the first time ever he let me feed him from a spoon today. That is HUGE!

Big C's first visit to CHEO

We had our visit at CHEO today. The doctor was great! She was really knowledgeable and I felt like she was on top of everything. Big C even had to wear a tiny little hospital gown-good thing the diaper covered his little bottom!

The doctor felt that there is no question that Big C is still suffering from acid reflux. She completely disagreed with the advice of our GP to take him off of his medication. At her recommendation, he is starting back on his old medication tonight and will stay on it until we can get a prescription for a new drug filled. The new drug is supposed to be taken mashed up in applesauce. Since Big C won't eat anything, they are having to create a liquid suspension of Prevacid for him. That is going to take a couple of days.

Big C is displaying classic reflux behaviour by not eating. We are to continue to encourage him to be at the table and take food and hopefully he will start to swallow some of it.She has referred us to see the Occupational Therapist at CHEO. This will help him to unlearn some behaviours that he has picked up. Currently he is used to taking food, chewing it, and then spitting it out. The OT should help us to help him with that.

He will be receiving a barium swallow test. He has to swallow this stuff and then they will take a look at what it does. In this test the barium will have to go all through his intestines.She is worried that there may be damage in his oesophagus from his reflux.

She is also worried that he may have something else going on alongside the reflux. To take a look at this, she wants to do an upper endoscopy and biopsies. This is a scope that will go all the way down into his system under general anaesthesia. Luckily for us, they are closing for Christmas and can't get it done in time. If he starts to eat after a month of being on the Prevacid, he won't have to get the scope. If he doesn't-he is getting the scope. We would prefer not to have to have the scope performed if possible.

Please pray that the Prevacid works and that Big C starts to eat so that we don't have to go down that road.They took some blood today to see how he is doing in general. They want to check everything from his iron levels to his nutrients.It was a long day, but I really feel that he is in good hands. Thank you so much for all of your support.