Inside HBC

New weight gainer shake

I am constantly trying new things with Valentino to try to help with his weight gain and growth.

He has been loving the following chocolate milk concoction:

6oz organic whole milk

2 Tbsp. organic chocolate syrup

1 Tbsp. PWO (a post workout protein powder blend)

1 Tbsp. lactose

1 Tbsp. powdered milk

Valentino will typically drink 12 oz. over the course of breakfast.

We go back to the specialist to check weight and height in December. So, I have 2 months of project “ValVal Gainer.”

Valentino refuses to take his enzymes

I would love to be able to say that at 2 years old, Valentino takes his enzymes with every meal that contains any fat and that he is a good sport about it. However, this picture definitely reveals otherwise.

It has been a task over the past couple months to find a pattern that works for him to agree to take enzymes. Initially, I hid the enzymes in his apple sauce, pudding or yogurt. But, soon he figured out that if he saw any of those foods before mealtime–it meant enzymes. And, he would clamp his jaw shut and refuse to eat. I decided I had to stop trying to hide the enzymes and instead let him see them on top of the food and begin to teach him that it is part of his daily life and is what helps him grow into a strong and healthy big boy.

It took several attempts over several mealtimes to finally settle into a good routine. First, I would put the enzymes on top of his apple sauce next to his plate of food and explain that he needs to take his enzymes to grow big and strong. When he would refuse, I would excuse him from the table and when he would come and ask to eat, I would remind him of his enzymes. He would refuse and this went on and on and on until he got hungry enough to willingly take his enzymes. Now, he seems to be in the habit of it and will even ask for his enzymes in apple sauce before a meal. Phew. I can only hope this lasts……..

Valentino reacting to hearing that he has to take enzymes

Routine check up 9/13/11: wt. 10th percentile, healthy lung function

Yesterday was our routine check-in/check-up at Children’s Hospital.

I was able to get an appointment at the Fairfax location which is much easier to navigate than the DC site.

The Fairfax location is incredible—the staff redecorated the waiting room to include cartoon characters on the walls, a coloring station, low tables with a variety of games, a large tv with cartoon movies playing and big cushion-y blocks for the kids to tumble around on.

Valentino’s lung function is still 98% and his lungs sounded pretty clear. His voice is a bit hoarse and he has been coughing in the morning and at night at bedtime over the past 3 days. Dr. Sami says it sounds like an upper respiratory issue–nothing has settled into his lungs. Since Romeo started back to school last week, it might be simply a case of bringing home a bug from school.

As for his growth and weight gain, Dr. Sami still would like to see Valentino gaining more weight. His height increased since our last visit enough to put Valentino in the 10th percentile for weight. Yippee.

However, his weight is not increasing as quickly as it should. Valentino’s diet is already very high calorie and “high test” so I am struggling to figure out how to get more calories in. I’m currently adding chocolate syrup and powdered milk to his milk every day and encouraging him to eat ice cream, sausages, bacon and foods cooked with cream and butter.

Because Valentino is having normal, formed bowel movements (not greasy at all) it doesn’t appear that his lack of weight gain is due to malabsorption. I might have to give in on my desire for Valentino to have healthy, organic nutrient rich foods and start incorporating fast food into his diet…….

As of today, with the slight upper respiratory problem, Valentino is doing 20 minutes of vest therapy 2x daily as well as nebulizer with albuterol 3x daily.

2 year old routine check up-healthy lung function

Yesterday I took Valentino to meet with Dr. Sami at Children’s Hospital for his regular check up/check in. Val now typically starts screaming and pitching a fit the instant the nurses come at him to weigh, take his temperature and check his height.

After we got all of his vitals, we were moved into the exam room where we waited to see Dr. Sami.

She gave us about 20 minutes to settle in and then kept her chair a substantial distance from Val as he was still upset and trying to calm down after his crying and screaming fit.

Dr. Sami inched her way, as we talked, closer and closer to Val and then played with him quietly and kindly to build his trust. I am ever grateful for such an amazing doctor. She takes her time and helps make the visit easier on Val instead of rushing through the exam while I hold Val down.

I was excited to find that his lungs are completely clear and sound perfect and he has moved up on the growth charts. Dr. Sami is pleased with his weight gain although still suggested bulking his calorie intake through the day by adding ice cream to his milk or half-n-half.

Val now weighs 25 lbs. and is 2 years old. He has healthy lung function and a normal throat swab (no bacteria).

Winter update-1 round of steroids

We managed to get through this winter, so far, with just one round of steriods (4 days).

Around Christmas time, Valentino was progressively getting fussier and fussier and was very snizzly. On Christmas Eve the worst came out as he was having screaming fits and was miserable–congested and having trouble breathing.

The week prior to Christmas, I had to increase Val’s nebulizer (albuterol) treatments to every 3-4 hours and this makes him jittery and irritable. By Christmas Eve, he could only sleep on an off in 15-20 minute bouts, but couldn’t get completely comfortable enough to sleep soundly and was waking several times in the night screaming and crying. The next day I spoke to the staff at Children’s and Dr. Sami called in a prescription for steroids and by day 2 on the steroids, Val was better.

I’ve noticed that when Val is wheezing or congested, he will rear his head back and scream and can’t seem to get comfortable laying down. As much as it’s hard to see him uncomfortable, I’m glad that I’m able to recognize particular reactions he has now so that I can act quicker than last year when his cold really set in and he was struggling to breathe for longer than I realized.

After seeing that Val was coming home from daycare with lots of various cold and flu symptoms, I decided to switch him out of daycare and to an in-home nanny/babysitter. I’m so happy with the decision even though it’s been a bit of an increase in financial pressure.

Valentino’s overall health has improved and his nanny pays close attention to making sure he gets lots of good meals and snacks and plenty of rest. She’s very consistent with his enzymes and does albuterol treatments 1x per day in the afternoon. This works much better than having him do nebulizer when I get home from work at night because the albuterol leaves Val jittery and a bit wired.

I am anxious to move past all of the rainy, cold, windy weather we have been having and into the warmth of Spring so that we can be less worried about battling cold and flu viruses.

Salt Sauna sessions

Today I started Valentino on salt sauna sessions. He has had a runny nose for two days and is sneezing up bright green phlem after his vest sessions. He was wheezing a tiny bit this morning so I figured it is time to start a sauna program in addition to his airway clearance vest and nebulizer treatments.

We began with a short 20 minute session in a sauna temperature of 120 degrees. Valentino was sweating a little bit by the end of our session.

At La Casa spa in NY, they run a salt sauna similar to the programs we run at HBC and have a great description of the many benefits of salt sauna sessions.

http://www.lacasaspa.com/spa-services/salt-sauna-3/

Today, Val and I brought a bag full of toys, a mini trampoline and plenty of water to keep us entertained and hydrated.

While I know that this therapy might be met with skepticism from the Western medical world, as long as Val stays hydrated I feel that salt sauna will greatly benefit his lungs over time. Regular sauna use has been proven to benefit the body and is commonly used, in particular, in Finland and Sweden. Because one of the complications with CF is that CFers lose lots of salt in their sweat, I need to make sure that Valentino stays very hydrated during his sessions in the sauna.

Exposure to salt has been proven to be extremely helpful to CFers so I am hopeful that the salt sauna sessions successfully help clean his lungs and keep him bacteria and infection free for as long as possible.

Many families have a rec room in their basement, a tv, video games, or lots of storage. We have chosen to build a sauna in ours and fill it with salt rocks.

The following is a quote about saunas taken from the book “In the North: Autobiographical Fragments of Norway, Sweden, Finland: 1936-1946.

“The sauna… Is an apotheosis of all experience: Purgatory and paradise; earth and fire; fire and water; sin and forgiveness. It is lyrical ecstasy. It is resurrection from the dead. It is eternal new birth… You are healed, you are made new.”

New Treatment with Airway Clearance Vest

Last week we were introduced to Valentino’s new part of his daily treatment regimine–the airway clearance vest. I met with a rep, Suzana, from Hill-Rom to learn how to use this crazy vibrating vest. Suzana was very thorough and helpful in answering all of my questions. I was so impressed that, for one of the first times, an experience with the medical system went smoothly and was very convenient to our life. Suzana came to our home and we had a relaxed and comfortable setting to learn about the latest, and potentially overwhelming, part of Valentino’s treatment regimine. As it turns out, the vibrating vest is pretty simple to use and Valentino is willing to comply with the treatment regimine as long as he gets to watch Elmo movies.

Valentino checks out his new contraption

Valentino is starting with 10 minutes at 10MHz and then 10 minutes at 12MHz (this is basically the speed or strength that the vest vibrates at). Suzana recommended the second 10 minute session at 14MHz. But, the vibration was so strong that Valentino immediately went into panic mode and started screaming and crying while desperately trying to unhook the vest. So, after that…..we decided to stick with going to a maximum of 12MHz.

Now, the question of where to put this huge machine with its long tubes attached to the vest?

I cleaned out my bedroom closet and it is now Valentino’s medical station. I have a cart on wheels in the closet. When it’s time for Valentino’s vest and nebulizing, I just roll the cart out, plug everything in, pop in a movie and away we go. We are using the nebulizer at the same time as the vest so that will really clear his lungs and get the albuterol into his lungs. So far it is early December and Valentino has not had a single cold or cough. His throat swabs have all come back clean from his specialist. I am so determined to get through this winter without any lung infections. (Of course, ALL parents of CFers share the same determination and sometimes the child still get a lung infection……).

Part of the determination to keep him healthy through the winter means that we can’t miss days of his therapy. Unfortunately, I already missed two days. When the specialists told me from the very beginning that it is so vital to make sure he gets his treatments every day…I was certain I would not miss a single day. And, I thought to myself, “WHAT kind of a parent would SKIP therapy?!?!” Oops. Yes. A busy parent. Here I am having blasted through two long days of work, school for Romeo, dinner for the kids, violin practice for Romeo, bathtime and bed without even giving Valentino’s therapy a thought. I bolted up out of bed completely frantic yesterday morning realizing two whole days had gone by without even remembering Valentino’s therapy.

Now I have a big piece of paper on the fridge with bold ink that says, “DO NOT FORGET VALENTINO’S VEST AND NEBULIZER TODAY”

I think that will do the trick.

surrounding Val with love during his 1st Vest session. November 2010

Weight Gainer Pudding Recipe- Fractionated Coconut Oil

I have been, again, reading great things about the benefits of medium chain triglycerides (MCT) oil for people with cystic fibrosis. Due to their greater solubility in water, MCTs can be absorbed in the presence of minimal pancreatic enzymes and in the absence of bile salts.

I was previously thinking it was a great idea to feed Valentino as much fat as possible and add it in any way to his meals (added butter, cream, ice cream, bacon, etc.) The downside to this, which I recently learned from our new (and incredible) nutritionist at Children’s Hospital, is that I have to give Valentino so many Creon tabs (digestive enzymes) to help him digest the fat that then I end up exceeding the amount of digestive enzymes he should be taking in each day. Also, he ends up with a tummy ache and I’m not sure how he would describe it, but he just seems uncomfortable, gassy and in pain.

Apparently CFers do really well with the MCT because it doesn’t require such high digestive enzyme doses to digest it.

I was using the MCT for several months last winter and noticed that his breathing was even clearer and we had less cold/flu symptoms. I then stopped using the MCT to see if I noticed a difference in his health and/or weight gain. And it did seem to make a significant difference. His weight gain flatlined on his charts instead of continuing to progress in an upward trend. I am going to go back to adding the MCT into his diet and have found a recipe that he likes and is easy to incorporate the coconut oil into. (I use Fractionated Coconut oil which is a MCT).

HOMEMADE CHOCOLATE PUDDING

1 tbsp. Hersheys cocoa powder

1/2 C. sugar

1/2 C. whole milk

1/2 C. heavy cream

1/2 C. coconut milk

1/2 C. MCT oil

1 Tbsp butter

1 tsp vanilla

2 (heaping) Tbsp flour

Stir sugar, four, and cocoa together and mix well. Add milk(s) slowly while stirring. Continue to stir on low heat. When pudding thickens add butter and vanilla. Serve. So delicious with homemade whipped cream or a little chocolate or vanilla ice cream!

I love recipes like this because Valentino is still little enough that I have to break open his Creon tabs and sprinkle the enzymes on his food. So–puddings and blended foods are still very easy. If he sees enzymes on his spaghetti or sandwich….he already turns his head away and clamps his mouth shut to avoid eating it.

With chocolate pudding, it’s simple to mix in the enzymes and sneak them into his meal.

Glowing healthy boy 19months old

Successful Check up at Children’s Hospital

Yesterday we had a very successful check-up at Children’s Hospital. One I got past the sullen and recalcitrant receptionist, the remainder of the staff and the appointment in general was the smoothest trip to a pulmonologist so far.

Valentino is now 19 months old and weighs 23lbs. He is in the 50th percentile for growth.

This is really exciting for me. Also it was very exciting to have the nutritionist give us props for the dietary plan I’ve got going with Valentino.

As per the growth chart, Valentino’s growth has kind-of “flatlined” and the doc would like it to continue to move up on the charts. Moving into the winter months and risking cold/flu/lung infection, I want to make sure Valentino stays healthy and keeps his weight up just in case we hit a bump along the way and he gets sick and drops a little weight.

The nutritionist recommended adding powdered milk to his whole milk to beef up the calories. I will go back to adding a few drops of coconut oil and cod liver oil to his milk as well. The nutritionist asked if I had ever tried pediasure and when I told her that I prefer not to because it’s chemical laden and makes Val stink…I was expecting to be met with an attitude. But, the nutritionist just laughed and said it’s fine not to use it and to instead add powdered milk to his whole milk to make it higher in calories.

Amen! We found a practice where the nutritionist respects my knowledge and ideas and will trouble shoot with me on helping him gain weight without loading him up with chemicals and junk food.

The remainder of the appointment and the rest of the staff we met with was equally as open to a discourse about Val’s treatment plan and I received a ton of useful information about the current state of CF.

As we transitioned to various areas of the hospital, we were guided by a staff member so we didn’t get lost along the way. The 4 hours flew by and were completely seamless.

I feel, for the first time since Valentino’s diagnosis, that I have a Western medical team of experts guiding me along and supporting Val and I through his CF journey.