1 Corinthians 16:14 ~ Do everything in love.

Friday, February 17, 2012

February Clinic 2012

Bryce and I headed down to good old CHOA for his first clinic of 2012.
Our (my) motto for the day was to
"Kick some CF arse and take some names".

Triage' time.
This boy LOVES clinic and his CF team. Being "still like a statue" while they take his pulse and pressures is VERY hard for him.
Usually takes 2 or 3 tries before they can get the necessary information.


Overall we did kick some CF tail, but we have some work to do in order to give CF a complete whooping. His lungs sound great and his nasal passages are clear. His team loves that fact that he does nasal rinses each day. Fellow moms (all moms, not just CF moms), if you aren't using a nasal rinse, you have to give it a try. It's awesome!! Bryce doesn't mind the process at all because he knows afterwards he feels so much better.
(I will work on posting a video of him doing his rinse).

The rain outside provided some entertainment as well as the 3 ladybugs in our room.
So random. Bryce was fascinated by them.

Bryce's weight seems to be our biggest enemy currently. Although he looks like a solid little dude he isn't where they want him to be with his weight. He weighed in at 35 lbs and his height was 39". His weight goal for this clinic was 36 lbs. He is steadily going up in height, but his weight isn't keeping up so his BMI fell to 47%. The highest his BMI has been was 65%. Although it doesn't seem like a big deal to be just under 50%, when you look at his weight/BMI on his tracking graph there is a huge decline; the biggest he has ever had since we started tracking him. Since November clinic he only gained .5 lbs. That is not great at all. Getting this boy to sit down and focus long enough on eating is a daily battle for us. If I had a quarter (note that I said a quarter and not a dollar) for every time I say "drink your milk", "eat your food", "finish your sandwich", "drink that delicious milkshake" etc., I would be a very wealthy woman.
Most of my day is filled with motivating Bryce to eat.

After getting his throat culture and triage' Bryce dug into his lunch while watching some cartoons.

After lunch it was time to play cars.

Multi-tasking.
Playing cars AND watching cartoons.


So the plan is to increase his calorie intake even more. I'm going to start sending him to school with his own snack. The kids in his preschool class rotate snack so each kid brings in snack for the whole class when it's their turn. Now most parents are going to want to send in healthy/low fat snacks for the kids. It's likely that we are missing an opportunity to pump him with calories during his snack at school. I might have to send him in with a milk as well. I didn't want to do that because I was trying to avoid him having something that the other kids don't, but we will do what we must. Bottom line, he isn't like the other kids. :)

Self-portrait time.

We are also going to try a late night high calorie snack also. I'm thinking peanut butter crackers or apple slices with peanut butter. Something small, but high in calories that is will stay with him while he sleeps. I never thought about giving him a snack just before he goes to bed, but it makes sense so we will give it a whirl.

Another option is to replace his lunch milk with an Ensure. As of right now he gets one Ensure per day with his dinner. He drinks the Ensure Plus which has 350 calories in addition to his meal. His regular full fat milk tops out at 200 calories per serving once I add strawberry or chocolate syrup. By dropping the milk and adding the Ensure we can tack on another 150 calories to his lunch. I cringe because the Ensure's are SO expensive!! I buy the store brand when available to save money, but still.

We are also going to buy a scale. I'm not thrilled with this because I tend to obsess with weighing myself if there is a scale around. It's silly I know, but that is why we don't have one. Having a scale will be handy as we can then we can see if these new changes are working or not.

Chair jumping time.
Since clinic was slower than usual I was coming up with all sorts of ways to entertain this ball of energy in a 10 x 10 room.
He did this for about 20 mins.
It was riveting.


Our mission until the next clinic will be to add calories and gain that weight. My hope is to avoid him being put on Periactin (an allergy drug that can also be used as an appetite stimulant) which is the next step. I weaseled out of using Periactin last year when he had a dip in his weight gain, but an increase in his height. We increased our efforts on getting him to eat then and it paid off as his weight went back up. I'm sure going on Periactin is not a big deal, but my view is that Bryce has a life that will be full of medications. Before jumping on another medication I would much rather see if we can't get him to gain weight on his own. If our efforts don't produce the results we need then of course I will give the Periactin a try. I'm just not one for jumping on more medication when it may be something we can fix on our own.

Photos courtesy of Bryce. He did a great job taking a picture of my shoe.

And finally - I asked about Kalydeco. The CHOA CF program has around 150/160 kids. Seven of those kids have the G551D mutation and two of the seven are 3-years-old. Bryce and one other kid. Crazy huh? Anyway, our clinic is of course excited about the medication, but cautious at the same time. As excited as I am about Kalydeco, I also realize that Bryce is technically not old enough for it. Since Bryce has been very healthy and we have had little CF related issues his docs including myself feel it's best for him to wait. So for right now we are going to sit back and see how the drug performs on those old enough for it. With that said, I asked about the pediatric trial for this Kalydeco - the trial to help determine dosing for kids 2 - 6. Our clinic at Scottish Rite is not participating in the trial, but their sister site at Eagleston is. I made sure they knew we were interested in trying to get into that trial regardless of what site it was at. The research coordinator came in to talk to me and said she would keep me in the loop on everything. They believe things will get underway in the next few months. Hopefully we can get Bryce in that trial. Bryce will be 6 in just 2-1/2 short years so if we need to wait things out we will. Like I said, he has been very healthy so there is no urgency on our part, but getting in the pediatric trial would be awesome. If we have to wait, maybe by then there will be more information on how insurance companies plan on handling the hefty price tag that is associated with with Kalydeco. I keep hearing different stories, but would like to see how things pan out over the next year. For now we are at peace with waiting...or observing if you will. ;)

Oh those eye lashes...

Oh and one last thing that made me happy. Bryan and I have been talking about another Disney trip for the kids. Key word is talking because taking 3 kids to Disney is umm..pricey to say the least. With the girls being in full time school and with Bryan's work we can't go on vacation anytime we feel like it these days. I asked our pulm nurse if we could get a medical note/prescription to use for a medical/handicap pass in the parks. I couldn't even finish the sentence before she said, absolutely...anything to get her kids to the front of the line! So, that is a nice little nugget to have when planning a possible Disney vacation. A reliable source told me they did Magic Kingdom with their medical pass in about 3 hours since they literally walked onto every ride.
This makes me slightly excited!

Next clinic is on May 10th.
Please pray for his weight gain until then.

10 comments:

Karah said...

Why do you need a medical pass at disney? I thought these were for people who couldn't ride on all the rides (like people in a WHEELCHAIR). They get them because all of the rides are not ADA accesible so they can go on the rides they can get on, in a timely matter, etc.

Why does having CF entitle a person to get this medical pass?

If theres something I'm missing, please let me know.

Tara said...

Its to avoid germs in long lines with people. CF-ers being around dirty germy people is a huge hazard for lungs.

Tara said...

We'll continue to pray for your family Jenny, and more specifically Bryce's weight. Great pictures!! Looks like Mommy Bryce bonding time :)

Jenny said...

Karah...if we go to Disney it will be in the summer which brings hot weather. If you know anything abot CF then you know that it is very important for a CFer to not get dehydrated. Waiting in the heat would indeed cause him to sweat more which would lead him to run the risk of dehydrating or over heating. So yea...if I can get a pass to help him not sweat as much AND avoid standing in close proximity to other people (umm hello airborne germs and germs in general) then I will do it. I would say Bryce deserves that...more so than an extremely overweight person who gets a medical pass because they can't walk the parks or stand too long. He actually has a medical condition and I willdo my best to let him have a "normal" life while trying my hardest to keep him as healthy as possible.

Sandy said...

Love all your awesome pics on here. I can almost see the minutes passing by in that exam room... :)
He is such a cute stud! Love that hair gel he has going on too! We use to have Madeline on Ensure plus (350 cal) but she stopped eating much meal because the shake filled her up soooo much. We switched to carnation instant breakfast with whole milk. (Makes a 300 calorie shake) and she still eats plenty of the meal with it. We do this with two meals and it was really helped keep up with the weight gain. We usually buy the vanilla carnation, whole milk, and then add strawberry or choc syrup to it...(the syrup adds another 50 cal per tablespoon) SO it becomes a 350 calorie shake but doesn't fill her up. It looks more like strawberry or chocolate milk and is so much thinner than the typical shakes. I am sure your little stud will rise to the occasion too. He looks great!

Karah said...

ok, I didn't know about the overheating. Sorry, I just wanted to make sure you weren't missusing the pass cuz that wouldnt be nice. And the whole germ thing slipped my mind sorry.

Jen Tomerlin said...

Hey Hey Hey Jenny!!! We are doing the medical pass when we go to Disney World in April. My Social Worker at clinic told us about the pass as well as the agent that is helping to book our trip. You are exactly right about the reason for needing it. That's what so aggravating about this disease, our kids look healthy that friends and family don't understand the behind the scene stuff we do to keep them that way.

Hopefully, one year we can meet up there. Next year we are going to do the Disney Cruise that leaves from Texas. Then the following year we are going back to Disney World since Bryce will be a little older and might enjoy it more.

Bryce is handsome as ever!! Love the hair. I wish I could do something with my Bryce's hair but his is straight as a board!

Anonymous said...

the pass for Disney is the best thing ever and our kids deserve it! Considering they miss hours each day doing treatments plus everything else. We've used it three times so far and it makes Disney much more pleasurable!!!

Megan, mom to Aidan 7, with CF

EMR said...

It is very hard to see children suffer with health...it breaks my heart and the parents feel so helpless and sad that it affects their life also.Wish you the very best.

Victoria's Mom said...

Ensure is expensive, but you can make your own ensure like drink with whole milk, heavy cream (I use 4 Tbsp in 8oz), carnation instant breakfast or ovaltine - similar properties a whole lot cheaper.

Victoria doesn't like the powders in her milk so we just stick with whole milk & heavy cream. Occasionally adding 1/4c powdered milk for a protein boost.

This is added to a granola bar or 1oz chips or some other dry snack - easy to eat cuddled on the sofa before bed.

Best of luck getting him to put on some more weight. Periactin was mentioned at our last clinic too. We did it once. I don't want to do it again.

Perhaps you'll find some helpful tips here on helping him eat more without struggle.
http://www.happyheartfamilies.com/FoodIssues.html