Wednesday, March 29, 2017

Caleb visits with the nutritionist & B's post op appointment

This morning Brookelyn had her post op appointment with Dr. Blotter.  I was a little worried about what her tubes would look like.  Historically, she hasn't done well when she's had just one tube in each ear.  Much to my surprise (and delight) her tubes were open and looked fantastic!  That's a first!

I talked to Dr. Blotter about what Dr. Hoffman said regarding her headaches and a possible sinus or allergy connection.  Dr. Blotter said that we could re allergy test her since she was so young when she was tested last time.  However, with the intensity and duration of her headaches, allergies were likely not the cause.  It seems more plausible that the cause of her headaches is sinus related.  Dr. Blotter told me that they have a small CT machine that takes a picture of the sinus cavity much like a panoramic x ray at the dentist's office.  So, we have scheduled an appointment for the end of April to go have this CT scan of her sinus's done to see if there is anything there that would be causing constant headaches.

Caleb had his appointment with the nutritionist.  This is a different nutritionist than the one he saw a year ago.  Her name is Terel Anderson.  I will admit, I didn't have a lot of hope for this appointment.  The last time we saw a nutritionist it was a joke.  He wanted Caleb to drink chocolate milk all the time and he wanted us to calorie pack with junk calories.  I didn't feel like that was going to get to the root of the issue or solve anything.  I spoke with Terel on the phone a few weeks ago and kind of gave her an over view of what we've been dealing with with Caleb and food.  She did tell me that there's a food clinic here in town that we could get him into if necessary.  The food clinic works in conjunction with Primary's failure to thrive clinic as well.  After speaking to her a few weeks ago I had a good feeling about the whole situation and was a bit more optimistic.

I feel like today's meeting with Terel was a productive meeting.  We learned that Caleb weighs 44.5 pounds (0.8% - not new news), is 48 inches tall (3.57%) and has a BMI of 13.73 (3.44%).  Terel told me that she wants his BMI no lower than 10%.  The BMI we were given today is actually lower than what Dr. Ohling told us it was a couple weeks ago (16.73).  Dr. Ohling told me the cut off for being underweight is 19, but Terel said that 19 is the cut off for adults.  I never did find out what the cut off is for kids.

At the end of our meeting with Terel we had a few goals to work on for the next month (until we go back to see her again).  1.We need to be giving Caleb whole milk and not 2%.  If he wants chocolate milk, fine, but it needs to be whole milk.  2.We are to cut out all juice.  This isn't hard as I don't buy a lot of juice anyway.  She said that the sugar in the juice will fill him up, curb his appetite and make him not hungry.  So, no juice. 3. He can drink water in between meals, but not at meal times.  Drinking water can help fill you up.  Also, because liquids can fill you up, he has to eat his food first and have his liquid (milk) at the end of his meal. 4. He is to have a high calorie snack before bed each night (ice cream, milk shakes, etc).  Let me tell you this one sure was met with enthusiasm!  Terel also wants us to take advantage of what he will eat (which she did say we've been doing a good job of).  For instance, if he wants scrambled eggs, add some cream cheese to those scrambled eggs or some half & half or some whipping cream.  If he wants bread, give him wheat to increase his fiber intake.  If he wants fruits or veggies go ahead and let him eat all he wants of those.  She wants us to try and get him to eat Greek yogurt instead of other kinds of yogurt.

 She did say that we've been doing a good job of what she called Division of Responsibility.  That means that we are in charge of what food goes on the table and when and he's in charge of whether he eats it or not.  She said to keep that up.  She was also pleased that we've been able to pinpoint which foods he will eat and under what circumstances he will eat that food (for example he will only eat ham sandwiches if they are a certain temperature) so that we can maximize that.  She said that he may have a texture issue and that's something that can be addressed at the food clinic if necessary.  She also said that it's highly likely that he will need to be exposed to a food 80-100 times before he's even going to taste it.  She said that if he lets us put different foods on his plate, great, count that as an exposure.  After being told 80-100 exposures I'm feeling like I'll never get the kid to try new foods unless I only cook the same meals every week for 100 times!

Terel said that she's good with us continuing on what we're doing with Dr. Ohling and JanaLee.  She agrees with Dr. Snadgren that if it ain't broke, don't fix it.  Since we saw progress there before she says to keep going.  Travis said he feels like since we started the semoralin last week that Caleb has been more willing to try foods at dinner time.  He isn't eating them per se, but he's more willing to try them than what he was.  Travis noted today that Dr. Ohling told him the semoralin should help increase his appetite.  Terel said that there is an appetite stimulant they can put him on, but she doesn't want to do that right now with us trying the semoralin and changing a few food routines.  Otherwise, we won't know what it is that's working and what's not.  When we go back in a month we will re evaluate that and see if he needs to try the appetite stimulant.  She did say that's something that he can't take long term so I don't know how long that would last.

Side note - as far as the Semoralin goes, Caleb has been doing really well.  I seriously thought we'd have to sit on him every night to do it and that it would be a screaming raging temper tantrum.  He's surprised us and has done really well.  Steve (his favorite cow) has been MIA for two days and that upsets him at shot time.  Tonight he finally caved and found another stuffed animal to hug while he got his shot.  I'm sort of crossing my fingers Steve stays missing (he's WAY attached to that thing) and part of me is sad about it and hopes we find Steve next week while Spring Cleaning so that he has Steve to squeeze during his shots.  We haven't noticed a major growth spurt yet on the semoralin but Dr. Ohling did say that it would likely take a month or two before we saw any results.

So, we survived another day and two more doctor appointments!  I think we are good on dr. appointments until we go back to see Dr. Ohling when the semoralin runs out (which I found out the $300 was actually a 2 month supply not a one month) or until the first part of May when we go back and see Terel.  Here's hoping we see some growth!