Yesterday was our August clinic visit. Most of you reading this know what clinic is, but for those of you who don't...
We go to clinic every 3 months and meet with Bryce's CF care team. This team is a mix of doctors, nurses, respiratory specialists, nutritionists, pharmacists and social worker. The CF team at Childrens Health Care of Atlanta (CHOA) are fabulous. I adore this team and am so grateful Bryce has such a great group of people looking after his health. After each clinic we are given a piece of paper outlining his care and goals until the next clinic visit. It's nice to have a nice little summary of the visit and where Bryce is as far as his health goals are when we leave. Very handy to have all the information in one place on one piece of paper. I keep all of his care plans in a binder that I take to all of his doctor appointments.
Not a whole lot to report from this clinic, which I expected because things with Bryce have been going pretty smoothly. I hope I didn't just jinx him by typing that. ;) Bryce's lungs are fabulous. The inside of his nose is fabulous. His energy is fabulous...as we all know! Nothing changing on his medications as of now. The only area we are focusing on currently is digestive.
Now for those of you who aren't familiar with CFers...not all, but most have digestive issues. To give you a heads up I'm telling you now that I am about to talk about poop. If you would have told me 10 years ago that I would be some what of an expert on poop I would have laughed. But here we are, parents of a little Fibro and thus experts on poop. Bryce poops at least 3 to 4 times a day...sometimes more. Sometimes they are solid, sometimes smooshy, sometimes gritty, sometimes oily and every so often they are fatty looking. His poop seems to be different from day to day. Our GI doc didn't like to hear this, "Something is off with his enzymes". Bryce should be pooping more "solid" poops only 1 to 2 times a day. This is our goal for next clinic. To reach this goal we are going to approach some of his meals differently. One way is to not give him milk with his meals. Dr. P seems to think he isn't wanting to eat because he is filling up on his milk. He has to have the milk, but he also needs to eat actual food so I just need to find the right balance. Over the next couple of weeks I am going to play around with a few ideas to see what works best for him. One of these being giving him his high calorie shake in the morning for breakfast since he doesn't want to eat in the morning, but only wants to drink.
Any advice or ideas from fellow CF parents is welcomed!!
As far as Bryce's weight, we didn't meet our weight goal this time around...we were JUST under it. His goal was 29 lbs, but he was at 28.8 lbs. I know so close, but I like to BEAT it! His BMI went down from 47% to 42%. Not a huge deal, but I really want him to get that 50% goal we set so long ago. I wasn't surprised we dropped because since last clinic: Bryce has shot up in height (76 percentile), and has decided he has no time for eating because being active is much more important. All of this activity is burning up the few calories I am getting him to eat. SO hence no big change in weight.
Overall a good clinic visit. Going to work on the balance of enzymes and meals and milk and keep everything else the same.
Here are a few pictures from our visit.
We go to clinic every 3 months and meet with Bryce's CF care team. This team is a mix of doctors, nurses, respiratory specialists, nutritionists, pharmacists and social worker. The CF team at Childrens Health Care of Atlanta (CHOA) are fabulous. I adore this team and am so grateful Bryce has such a great group of people looking after his health. After each clinic we are given a piece of paper outlining his care and goals until the next clinic visit. It's nice to have a nice little summary of the visit and where Bryce is as far as his health goals are when we leave. Very handy to have all the information in one place on one piece of paper. I keep all of his care plans in a binder that I take to all of his doctor appointments.
Not a whole lot to report from this clinic, which I expected because things with Bryce have been going pretty smoothly. I hope I didn't just jinx him by typing that. ;) Bryce's lungs are fabulous. The inside of his nose is fabulous. His energy is fabulous...as we all know! Nothing changing on his medications as of now. The only area we are focusing on currently is digestive.Now for those of you who aren't familiar with CFers...not all, but most have digestive issues. To give you a heads up I'm telling you now that I am about to talk about poop. If you would have told me 10 years ago that I would be some what of an expert on poop I would have laughed. But here we are, parents of a little Fibro and thus experts on poop. Bryce poops at least 3 to 4 times a day...sometimes more. Sometimes they are solid, sometimes smooshy, sometimes gritty, sometimes oily and every so often they are fatty looking. His poop seems to be different from day to day. Our GI doc didn't like to hear this, "Something is off with his enzymes". Bryce should be pooping more "solid" poops only 1 to 2 times a day. This is our goal for next clinic. To reach this goal we are going to approach some of his meals differently. One way is to not give him milk with his meals. Dr. P seems to think he isn't wanting to eat because he is filling up on his milk. He has to have the milk, but he also needs to eat actual food so I just need to find the right balance. Over the next couple of weeks I am going to play around with a few ideas to see what works best for him. One of these being giving him his high calorie shake in the morning for breakfast since he doesn't want to eat in the morning, but only wants to drink.
Any advice or ideas from fellow CF parents is welcomed!!
As far as Bryce's weight, we didn't meet our weight goal this time around...we were JUST under it. His goal was 29 lbs, but he was at 28.8 lbs. I know so close, but I like to BEAT it! His BMI went down from 47% to 42%. Not a huge deal, but I really want him to get that 50% goal we set so long ago. I wasn't surprised we dropped because since last clinic: Bryce has shot up in height (76 percentile), and has decided he has no time for eating because being active is much more important. All of this activity is burning up the few calories I am getting him to eat. SO hence no big change in weight.
Overall a good clinic visit. Going to work on the balance of enzymes and meals and milk and keep everything else the same.
Here are a few pictures from our visit.
Getting weighed in triage.
Bryce checking on Jordyn's lungs with his own personal stethoscope. He thought it was so cool I actually let him play with it.
Watching the cars outside while we wait on the next person to visit us.
This is what 3 hours in a 10 x 10 room looks like.He was spent and ready to go home.
Not after 5 mins of being in the car for the 45 min drive home (thanks to traffic) he was out like a light!
4 comments:
Victoria eats two meals & two snacks a day. We always want more, but I never hold my breath. Her snacks consist of 9 oz of milk & 3 - 4 Tbsp of heavy cream & a dry snack she chooses - pringles, rits bits, or cheerios are the usual suspects. I'm hoping to add granola bars & other nut/seed containing items as she approaches 3 years old.
So that's 430 calories on the low end with just 3 Tbps cream & pringles single serve.
And for us, if we withhold the milk & snack with trying to get more table food into her she just refuses completely.
When she begs for extra milk, we give her 1/2 whole milk & 1/2 water because it's usually that she's thirsty. That limits her to about 30 oz of milk/cream a day.
You may want to keep a food, enzyme, and (ahem) poop diary and see how they relate for Bryce. We find that our CFer's bowel movements are directly related to how well he takes his enzymes for his previous meals. He likes to "crunch" his enzymes and that makes them ineffective.
Love your pics of CLINIC! We have to drive over an hour for clinic...but all well worth it..like you said! It is a LONG day! Congrats on healthy,happy lungs! I would really encourage you to try pediasure! Madeline drinks at least one in the morning and one at night and is already 29lbs at 18 months. Pediasure is really the only reason her weight has skyrocketted. Madeline LOVES the flavor..(vanilla)It tastes just like a milkshake (only because I can say i have tried it!) our clinic also mentioned that you can mix half pediasure with half milk. (one can of pediasure= 240 cal!) Good luck and congrats to a GREAT clinic...it's always so rewarding for good news!!!
Of course I have no advice on the feeding/drinking, but I wanted to leave a message anyways. :) It is nice to read that his clinic went well! He is such a precious little boy and I love all the pictures! Thanks for sharing your life (via your blog) with the rest of us. Always a joy to read!
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