Last Week

Jalen snuck a whole bag of various candies last week. He has since gotten himself back on track.

We are woefully short on Elecare. Thankfully, a free can of it arrived at Veronica's house, and we got it today. Otherwise, he would be hungry tomorrow. The delivery is supposed to come tomorrow, but no one will be home to sign for it unless they come after 3:00. Chris is going to try to arrange a later delivery time.

Weigh In

74.6

LOST WEIGHT!!!

Trouble In Paradise

Oooo-kay, Houston, there's a problem. Yesterday, Jalen ran out of Elecare...I'm not sure if he ran out while visiting Grandaddy, or just didn't take any over there, as I was at work. But when they got back, he was starving and tried to sneak a bagel. Chris caught him before he could eat any of it. I talked with Jalen quietly about it, and told him to let us know if he drinks the last of the Elecare so we can make more. He was also upset this weekend because he saw us eating hamburgers and he wants one too. I think the reality is just starting to set in now after 3 weeks.

As stated on the last blog, he is suddenly drinking much more Elecare. So to alleviate this set of problems, I decided to start keeping two mixed cans (128 oz) in the refrigerator at all times so there will always be some available.

Problem number 2 happened today, on the first day of school. Due to fear of ridicule and embarassment, Jalen barely drank any Elecare at all today. He drank none during class, and at lunch time he waited for most of the kids to leave the cafeteria before he drank a few hidden sips. By the time he got home, he was light-headed and had a massive headache. I was very disapponted as well as alarmed at this news. We had a long talk last night, and came up with a game plan for today, but he did not follow the plan. I cannot allow this to continue, so I will have to call the guidance counselor first thing in the morning to get her to help us on this. Jalen needs to learn to speak up for himself, and to just forget about what other kids say and do. This is about his health and healing.

More on this tomorrow...I'm exhausted.

Weigh In (From Saturday)

75.6 lbs

Hungry

Jalen has successfully completed 3 whole weeks of Elecare only!!!! Yay Jalen, we are so proud of you!

I am able to find bagged cotton candy for Jalen to snack on, as well as Propel water. Unfortunately, I just learned via internet that dextrose and maltodextrin are sweeteners and thickeners derived from corn, so that cuts out some other candies I was looking at for him. I still have not seen the Koolaid ingredients, or looked for sugar cubes. I did pick up some sugar packets while at Subway today!

Jalen spent the week with me at work, and seemed fine to suck on his drinks all day long. I packed two full drink bottles for the day, and he usually had a third leftover from breakfast that he toted along. I think two bottles should be enough for school then.

One other good note is that I met with Nurse Sharon yesterday, and his new homeroom teacher today, and they say they are on board with letting Jalen eat when he needs to. Mr. Harris even has a refrigerator in his room! I still need to communicate with the the teachers about notifying me regarding any food events in the classroom so that I can send some cotton candy for Jalen.

Lastly, Jalen is consuming at least 64 oz on most days, and is still sometimes hungry in the evening. Right now, it is 7:11; his Elecare for the day was finished about an hour ago. I am sure he will be hungry within the next hour. I need to email Elsie about this.

Poo-Poo Pain

Constipation is really hitting Jalen hard. He is going about every 3 days now, but the poops are rock-hard and really giving him pain. There is now a small raw area there, along with the huge exzema patch that we have been battling for months. To combat this, he'll try to drink at least one water bottle per day and take Miralax (a stool softener). I'm just waiting for an email back from Elsie to let me know the appropriate dose for Jalen. I also applied shea butter after his bath, and we'll continue the Triamcinolone every-other-day for the exzema down there.

We also had an allergy appt. today due to Jalen's asthma flares. He was prescribed 5 days of steroids, and we got samples of Symbicort to replace to lost one. We also got a refill prescription for Veramist, a new nasal allergy spray. It costs $130!!!!!!! Needless to say, Chris did not pick that one up. I'll call the GI tomorrow and request something else.

Jalen went to bed hungry tonight. He got hungry about 20 minutes before bedtime,but we don't want him drinking right before bed as he still wets the bed. He is only supposed to be taking in 60 oz. per day, but some days, 64 oz. is just not enough.

Poop Scoop

Regular poop last night. I was planning to give him suppository, but didn't need to.

Weigh In

75.4 lbs.

Gained 1 lb in 2 weeks

Asthma Attack

Jalen need a nebulizer last night at about 2:45 am for wheezing and coughing. Also, for some reason his Symbicort (asthma daily med) is missing, although he says he took it last night and put it back in the medicine box. We need to find it, and soon.

Splash Is A Bust

Oh well, the EO28 Splash is a no-go. Jalen doesn't like any of the three flavors. I'm pretty disappointed, but I'll get over it. At least this way I can stick to the old plan of mixing the whole can of Elecare at once for the day (much easier than making part of a can).

I made just a 33 oz. portion for this evening and added about 4 ice cubes to the blender to make it an icy drink. He really liked it that way, even with no extra sugar (I forgot to put it in).

Asthma Attack

While typing the last entry, Jalen started having another asthma attack. Lots of asthma flares in the past week or so. He is taking albuterol now via nebulizer.

Random Musings

1.)Normal bm last night, no extra help needed;
2.)Yesterday at the pool, I let Jalen go purchase a Gatorade from the vending machine (based on what the GI doc said). Halfway through the drink, I decided to check the label and **lo and behold** Gatorade contains high fructose corn syrup. Jalen was not happy to put it mildly. I wonder if the doctor was confusing Gatorade with Pedialyte? Anyway, Gatorade is out.
3.) This morning while drinking Elecare, Jalen spit the drink back into the cup, saying he felt nauseous. No throw up though. I wonder if this is related to the corn syrup he ingested yesterday.
4.) JG had an allergy appointment today. He measures 52 inches, a mere 3 inches short of Jalen, while BJ is a full 8 inches taller than Jalen. In the past, Jalen was always about halfway between JG and BJ. As for weight, JG (aka "skinny boy") is 69 lbs compared to the 73 lbs on the GI's professional scale. How in the world is JG, who has always been skinny, catching up with Jalen, and yet Jalen falls into the average category for height and weight? It just doesn't seem to add up.
4.) I checked the ingredients on Powerade today while shopping at the mall, and it appears Jalen can have that. He also got some bagged cotton candy today.

Height Check

55.5 inches (1cm taller than our June visit)

Good News From Doctor!

Jalen had a GI appointment with the nurse practitioner at the hospital today, and we got some good news. Jalen can have artificial colors (except for red) and Gatorade. That means he can have Dum-Dum lollipops, rock candy, and ...well...Gatorade (*smile*), which he is very happy about. The Gatorade is also very important for mixing Miralax, a very nasty tasting stool softener that would likely be undrinkable in water.

Secondly, Elsie gave us 6 samples of a fruit juice-type drink called EO28 Splash. It's just another brand of amino-acid formula, but it comes in three flavors (grape, orange-pineapple, and tropical fruit) and more importantly it comes in a standard juice-box container with a straw. Perfect for taking to school! And drinking from a "juice box" looks normal in elementary school, which is a huge concern of Jalen's. Now it is not guaranteed that a.) Jalen will even like the taste of it, or b.) Aetna will cover it as well as the Elecare. But if he likes it, our nutritionist will run the necessary paperwork through to request coverage.

Finally, the nutritionist looked at his height and weight from June and plotted them on a growth chart. She says he is between the 50%-75% in height, weight, and bmi. This sounds like great news, but I still have my doubts though. Jalen is skinny now, and he has never been skinny from Day 1. He's always been my strong muscle boy! And he looks smaller than most of his classmates now. Maybe they are all just overweight, who knows?

His endoscopy/colonoscopy is scheduled for Tuesday, Nov. 10. The cleanout begins the Sunday before. I'll have to schedule a follow-up appointment for 2 weeks after the surgery later on in September, as they don't have their November schedule up yet.

Elecare Party Today

We had a family Elecare party for Jalen today. Ma showed the video "Light and Hope: Jalen's Story" so that Granny could see it. I also talked a little about what will happen during this elemental diet and food trial process. Then Brendan helped me fill and pass out tiny cups of Elecare (or water for those that were not so brave) to make a toast to Jalen's health. Then Jalen got to go play video games with his brothers, cousin and favorite Uncle Tony. Jalen really enjoyed himself, and I hope that this will help him feel empowered to stay the course.

The word on the taste of Elecare? One person said it reminded them of coffee. One said, "It's just okay" (which is what I thought when I first tasted it). My sister did not like the smell, but thought the taste wasn't bad. Personally, I think if it were chocolate flavored I'd like it supremely better!

Other side health notes:
1.) Jalen had a nosebleed last night. He has not had one in a long time this time, but he is prone to them.
2.) Jalen finally pooped again today, a full 4 days after the suppository bm. I will discuss this with Dr. Malkani tomorrow to see if he needs regular suppositories, Miralax, or more water.
3.) I noted that right after the suppository and for a few days following that his appetite really increased, whereas before the suppository (and for the last 2-3 days) his appetite was down. He was barely drinking the Elecare today. My theory is that when his colon is "backed up" he eats less (or doesn't feel hungry). More observation and research are needed to prove or disprove this theory.

Weigh In

74.8 lbs

Elecare Unveiling

Saturday, August 1 2009 was the day it all started. Jalen's New Beginning sealed in a big cardboard box.

Coughing

I have two cough incidents to report that I forgot to post about. Last Saturday before going to the Victorian's house, Jalen began to cough and wheeze. He was given Albuterol via neb. After talking to him, I realized he had not been taking his meds regularly over the past week (me sick, and then vacation), which probably caused the asthma attack. When he is on the meds, his asthma is great. When off, however, look out! He would be in the hospital.

Also, Jalen coughed in his bedroom yesterday morning soon after waking up. It sounded like a wheezy cough, but it could have been an "I just ate something and my esophagus is reacting" cough. I will do a covert search of the room today to see if he has been sneaking anything.

Also, I just heard one or two random coughs (last Saturday I think) that may have been related to the asthma. I really hope he is not sneaking. He says he hasn't, but Jalen is a talented liar (I hate to say it, but it is true).

Here is Jalen with the fresh-off-the-truck first package of Elecare!

Suppository Success

The suppository worked quite well, and it only took about 15 minutes. Jalen drank more Elecare faster today, possibly because of that bm.

Day Five...We're still alive!

We've made it through 4 whole days on Elecare, and it's going very well overall! I'm finding that I have to remind Jalen often to drink his formula. I made it with no sugar yesterday, and he didn't like it as well and it was harder for him to drink. So this morning I added two heaping teaspoons of sugar into the blender with the can of Elecare.

I was also able to make some sugar water popsicles yesterday out of equal parts sugar and water. I got the traditional plastic popsicle-maker cups from Michaels, and also some rubbery popsicle-shaped ice trays that came with plastic handles you insert into slots so the popsicles freeze around the sticks (like a very long lollipop). They were ready to eat this morning, so I gave Jalen one after breakfast.

I was fighting some serious Chick-Fil-A urges while out with the kids yesterday. I really don't want any fast food smells in the car, as that would just be torture for Jalen, but man is it hard! I was good though, and ate a salad when I got home.

On the poop front...Jalen had a tiny bm this morning, the first in about a week. So I had him insert a glycerin suppository just now. We have Miralax, and I may have to resort to giving him that (highly nasty, but other kids on formula are taking it). Apparently, constipation is par for the course when on an elemental diet.

Syrup Making Escapades

I dusted off my unlucky, oversized, moth-eaten chef hat today and tried to make Jalen some syrup for a snowcone. I got a recipe from the 'net that I followed. So, my first attempt was to mix 1 cup each of sugar and filtered water in a saucepan. I slowly brought it to boil on medium heat (#5) while stirring with a rubber whisk. It took forever for the mixture to resemble something other than water.

The directions I had didn't say how long to cook it, and I'm no cook, so I had to take a wild guess. Using a candy thermometer, I heated the mixture until it was just going past the thread stage as I was removing it from the heat. I let it cool for a few minutes, then poured the syrup into a small Rubbermaid bowl. Unfortunately, it hardened into a yellow sugary lump within 10 minutes. To make matters worse, I decided to put the bowl inside a paper bowl in the microwave to remelt it. I had this brilliant idea to dip plastic spoons in the remelted slop to make some highly creative lollipops. Well, the Rubbermaid bowl melted, the plastic spoon melted, and the whole mess got tossed into the garbage! So much for quick thinking. Oh well...at least Jalen got to lick the syrup out of the pot before it turned hard.

After lunch I made a second attempt, and I got it right! This time I mixed 1 1/2 cups each sugar and water. I turned the heat up to 7, and cooked it (stirring every few minutes) until it was just below the thread stage (approx. 226 degrees Farenheit), then removed it from the heat. A delicious golden syrup is the result. I didn't burn myself, the kids, the pot, or the Rubbermaid this time. Yay me!!!!!!

The syrup is cooling in the kitchen now. I'm afraid to put it in the 'frig because it may get hard again. So now I'm off to crush some ice in the blender (no cooking involved...I'm good at that!) for Jalen's snowcone.

**UPDATED**
Snowcone is done, and I'm injured again! I was having trouble getting all of the ice cubes to reach the blades in the blender. So I shook the blender cup back and forth, then up and down. On the way up, I smashed my left pinkie between the top of the blender cup and the bottom of the cabinet. Ouch!!! Two injuries on the same hand? I think I'm done cooking for today (and maybe for the week).

Day 2 is almost through

New beginnings, day 2, draws to a close. Today went well! Chris bought a new, larger blender last night (holds up to 80 oz), which worked out much better this morning. It's the Hamilton Beach Dual Wave Blender. I just dump in the whole can of Elecare, fill with filtered water to the 64 oz. line, and blend. I did add 1 tbsp of sugar to his meal today just to see which way he liked it best. This new blender also came with two small blender cups that you can fill, stick in the blender, and take your drink to go.

Jalen did get hungry during church (about 2 hours after drinking 10 oz for breakfast), but did not want to go get his formula from the car. He was acting as if he were embarrased. After church, he started begging for a hamburger! Once he got full, though, he forgot all about it. He just recently said he wants something crunchy, but it's too late in the evening for ice.

One negative thing to note is that Jalen reports his last poop was last Tuesday or so. Not good. I'll see what happens tonight and tomorrow. He also had no water today (to my knowledge), so we'll work on that as well tomorrow.

Despite my cruel burn injury (*sniff*), I will attempt once again to make some some sugar syrup and a sugar lollipop tomorrow. This time, I will NOT touch the syrup! That was horribly painful last night...I had to dunk my burnt finger in cold water for an hour just to bring the pain down to bearable!

Weigh In

74.6 lbs. (baseline)

All weigh-ins will be done on our home scale on a hard surface.

New Beginnings

Today is a day of new beginnings! May God bless this day and all the days that Jalen goes without solid food. Yes, a ten-year-old boy who can't eat food for the next three months! Instead, he will be drinking an elemental formula called Elecare. Elemental means they take the proteins and break them down into amino acids in a powdered form. Jalen has to drink 60 oz of Vanilla Elecare to meet his nutritional needs. We really are starting all over again, as if he were a newborn baby. Except this time I have to deal with the task of formula mixing and management, something I have never done before (nursing is so much easier, and free!)

Today was a great day to start the formula. We spent the entire afternoon and evening at a brunch over at a friend's house, which gave me an opportunity to figure out how to juggle formula and outings. It went well. I made sure Jalen was full from Elecare before the rest of us ate. We stayed longer than expected, though, and Jalen got really hungry when it was time to go.

Jalen handled his first day better than expected. He did really well until he started to get hungry. He did display some anger and some low-level begging for something to eat, followed by "Elecare is dumb...I'm NOT drinking it." I calmly explained to him that he only has two choices at this point: to drink the 60 oz. per day by mouth, or to get an NG tube put down his nose into his stomach. He quickly agreed to drink it and calmed down after that.

When I asked Jalen what his thoughts were on how the day went, he said it was hard, but not bad. He said he got full quickly, but felt he had to keep drinking. He also felt a little nauseous once because he drank too much. Tomorrow I'll space out his "meals" to make them smaller, but more frequent feedings.

p.s.--I just got a bad burn on my left index finger trying to make some caramel for Jalen. I stink at cooking!