Category Archives: Health

Lentils: Another Homemade Blended Formula Recipe

Lentils and Peasphoto by photobunny

As a vegetarian, I’ve known about the wonders of lentils for a while. Not only are they delicious (especially in a soup or stew), but they also provide a powerhouse of nutrition high in protein, calorie dense and balanced out with a healthy dose of carbs. Armed with this knowledge, I decided to try a recipe for Jenna’s homemade formula using lentils. Here’s what I came up with:

  • 1 c. Bob’s Red Mill Vegi Soup Mix  (green & yellow split peas, barley, lentils & vegi pasta)
  • 1/4 c. quinoa
  • 2 T raw honey (No children under age 1 should consume honey!)
  • 1 tsp nutmeg
  • 1 T ginger (read this, too)
  • 1 T cinnamon
  • 4 c. coconut milk
  • 1 c. goat’s milk kefir and here
  • 1 c. powdered goat’s milk
  • 2 T coconut oil
  • 2 T Udo’s 3-6-9 oil (read here for benefits)
  • 2 T Hemp butter
  • 1 c applesauce
  • 1 medium apple
  • 1 medium banana
  • 1 large carrot
  • 1 c. chopped spinach (dark, leafy greens are an often overlooked source of protein)
  • 3 T kelp powder read this also (especially for it’s iodine, iron & selenium)
  • 6 brazil nuts (for selenium)
  • 1 c. water

All my ingredients are organic from our local co-op.

Preparation is easy. I simmer the soup mix & quinoa in the 4 cups of coconut milk. While that’s simmering, I add all other ingredients to my Vita Mix blender and blend well. I add the mixture from the stove, blend very well (sometimes adding more water to achieve the desired consistency to pass through the feeding pump tubing) and pour into storage jars.

Nutritional info:

  • 2651 calories (30 cal/oz)
  • 112 grams of fat  (38% of total calories)
  • 90 grams of protein (14% of total calories)
  • 344 grams of carbohydrates (51% of total calories)

Good to know when making these calculations:

  • Fats have 9 calories per gram
  • Proteins & carbs have 4 calories per gram

I’d like to get the protein percentage a little higher and will probably do so by using more of the lentil soup mix the next time. BUT, even though the percentage of protein for the overall mixture is not as high as I’d like, I calculated what she consumes in a day and found that she’s still getting the 18 g/day recommended for her age and weight.

Happy cooking! Happy feeding!


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ID Bracelet Giveaway

CONTEST CLOSED. “Kel” (Comment #4) was the winner. Waiting for her contact information to send out her prize. Wish I had one to give to all of you! Thanks for entering.

We recently purchased a MY-MED ID bracelet for Jenna. It’s similar to the one shown above and features a USB storage device enclosed in water resistant silicone. The storage device includes already installed software that allows you to simply fill in the blanks with important information for your child. Programming the information was as easy as plugging in the USB device and filling in the blanks!

Before we ordered Jenna’s, I accidentally ordered the MY-ID bracelet (the one pictured above). It’s the same idea, but doesn’t include as many pre-programmed spaces for medical information. This is good news for you, because you get to benefit from my mistake! That’s right! I’m giving away the above pictured MY-ID bracelet to one lucky reader!

I think these bracelets are priceless for kiddos who are prone to wander, especially if they’re non-verbal. I can even see advantages for “typical” kids when visiting theme parks, festivals, malls, or other places where there might be a higher likelihood of being separated. Even though the MY-ID bracelet doesn’t include multiple spaces specifically for medical information, there’s a “Notes” section where medical conditions or medications could be included. From the MY-BANDS website:

“Each band comes with instructions for loading numerous emergency contacts onto the USB device, so emergency personnel have easy access to this critical information so they can reunite you with your child. There is also enough space to upload a current photo and scanned fingerprint.

MY-ID is unique as it holds the emergency contact information of whom to call when a child is lost, or missing, NOT the childs name and personal information.”

Jenna usually doesn’t like wearing jewelry of any kind, but this band is light and comfortable and she never complains. In fact, she loves wearing it, and frequently prompts me to remember that she needs to put it on!

To enter the giveaway, all you have to do is leave a comment! Simple as that! Make sure you include an email address so we can contact you if you win.

Contest details:

  • Only 1 entry per person
  • Winner will be selected at random using a random number generator
  • Contest ends at midnight on August 5
  • A winner will be selected and announced on August 6 during the chat/blog hop for BlogHer at Home
  • Winner will be contacted via email

For more fabulous prizes and fun over the next week, be sure to check out the BlogHer at Home website!

Disclaimer: I didn’t receive any payment or products for writing this post. The opinions expressed here are completely my own.


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New Diagnosis. More tests.

Day 63/365: Stethoscopephoto by wenzday01

A couple weeks ago, we headed to our pediatric pulmonologist for Jenna’s 6 month checkup. I have a stethoscope (like the one pictured above, in case you were worried it was from a Fisher Price doctor kit) and routinely listen to her lungs to have an accurate baseline of her “normal” and monitor any changes or concerns. I told him that I had been noticing decreased breath sounds in her posterior, lower right lung and was concerned because it didn’t seem to be getting better. He nodded and confirmed that he heard the same thing and was also concerned. He ordered a chest CT to take a look at what’s going on in there currently, as well as to compare to the one she had at 2 to see if she is making any progress, remaining stable, or getting worse.

We had the CT scan last week, and Jenna was a trooper. She held as still as a statue for fear of the alternative: IV sedation. She HATES anything that requires a needle and poking and was determined to do it without. She did great.

This week we got a call to come in to the pulmonologist’s office to discuss the scan. The news was not so good. There was some comment about her lungs being the worst of any patient he’s ever seen, but, apparently, no prizes are awarded for worst. He showed me the extensive scarring and opacities throughout the scan, and my heart sank. It didn’t look any better than it ever has, to me. I asked him how it compared to the previous scan, and he said he hadn’t been able to access it yet. That comparison is next on his list, and should be happening this week. He asked me to go over her prenatal, birth and medical history again for him, and we talked, again, about her diagnosis of BPD and how that has never really “fit” her case quite right. He gave me a new diagnosis.

Bronchiolitis obliterans.

You can go read more about it through the link, but in a nutshell, her lung scarring has shut off major portions of her airways and restricted proper growth of her lungs. He said that she will never have “adult sized” lungs and will always struggle with fatigue and respiratory issues that will make her more prone to serious illnesses like pneumonia, as well as likely requiring her to depend on oxygen support again at some point. The main thing we need to determine is whether or not her condition is worsening (he will do this by comparing this CT scan to the last one). If it is, we need to find out why, so we can halt the process. We’ve already ruled out many possibilities over the years through various testing. Most suspect, if she’s worsening, are aspiration (stuff backing up from stomach into lungs or incorrect swallowing) or an underlying immune disorder. Testing for these would include a swallow study, bronchoscopy and blood work. Again, whether or not we do those tests depends on whether or not he finds that her condition is worsening.

His immediate concern is her current breathing status when she sleeps. For the last year, we’ve been noticing (and telling him) that she seems to often wake with fatigue, even though she sleeps 12 hours at night and still naps 4 hours in the afternoon. He said that everyone’s respiratory status drops with sleeping, but a typical person can manage that drop with no problem. His concern is that Jenna’s oxygen levels are dropping significantly enough (and carbon dioxide levels climbing as a result) that her body is kind of always running on a constant oxygen deficit from which she can never catch up. If this is the case, she might need to go on oxygen support at night right now.

We’re starting with home monitoring with a pulse oximeter tomorrow night. After he sees those results, he’ll determine if she needs (ANOTHER) full blown sleep study. We’re doing a six week test of prophylactic inhaled steroids to see if we notice any change when we stop them. It’s most likely that inhaled steroids don’t really help her condition unless she’s sick, because the meds can’t get past the airways that are closed from scarring. If we don’t see any change when we stop the inhaled steroids, we won’t continue to give them unless she’s sick, which will be somewhat of a relief because we usually notice some behavioral issues that accompany the steroid use (not to mention the financial savings).

Since learning more about the diagnosis through medical journals online, I have several more questions that will hopefully be answered in this next week, including possibilities of: cardiac issues from pulmonary hypertension, lung transplant, and shortened life expectancy, as well as available treatment options including experimental studies.

In summary, we don’t really know a lot at this point, but it looks like a summer full of more testing and determining better what’s going on with her. Until now, we’ve been holding onto the hope that kiddos generate new lung tissue until (around) the age of 8. I asked our doc where he thinks Jenna stands in that area, given the fact that she’s already 5 and a half. He gravely shook his head and said we’re not going to see any improvement. Her lungs are basically so scarred that, even if her body does some repair work, it won’t be significant enough for us to notice any difference. That was discouraging news.  BUT: it would be phenomenal to find a way to make her more comfortable, less generally fatigued, and not have to work so hard to breathe, which is hopefully the direction we’re heading with the path we’re on now.

If you’ve stumbled upon this post and have any information on or experience with pediatric lung disease or bronchiolitis obliterans, I’d sure love to hear from you in the comments!

Update 6/1/11: Just got a call from the pulmonologist who said that the comparison of Jenna’s current CT scan and the one from when she was two DOES show improvement! EXCELLENT news! So, even though her lungs are in terrible shape now, “better” still equals BETTER! Now, we just have to see if she needs oxygen support at night or not. Thanks for all your wonderful comments & support!


Posted by on May 26, 2011 in BPD, Chronic Lung Disease, Health, Jenna


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Nutrition Information

creating a balanced meal- food group plate- healthy nutrition meal planner platephoto by nutrition education

I’ve been getting several requests for information on where to find reliable nutrition information for creating homemade blended formula for tube feedings. Below are several sources I use with a brief description of each as provided by The Oley Foundation in their monthly newsletter.

The government’s nutrition website provided as a service of the National Agricultural Library of the U.S. Department of Agriculture (USDA). You can find links to USDA MyPyramid or Dietary Guidelines for Americans. The site includes a “Health Issues” page and links for shopping, cooking & meal planning.

Maintained by the Department of Nutrition at the Harvard School of Public Health and designed to help you achieve the healthiest diet possible by providing timely information on diet and nutrition. Colorful & easy to navigate.

The American Dietetic Association offers “Food & Nutrition Information You Can Trust.” Click the link “for the public” and you’ll find numerous resources and nutrition education materials. Site includes a BMI calculator and videos on a variety of food & nutrition topics.

Provided by the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) Includes current news on topics related to parenteral and enteral nutrition with information for patients and caregivers.

Registry of federally and privately supported clinical trials conducted worldwide, offered through the National Institutes of Health (NIH). There are currently around 100 studies on parenteral nutrition open to enrollment & 180 for enteral nutrition.

Additionally, one of my favorite books is Raising Vegetarian Children, which is just full of charts with nutritional requirements for children and tons of other useful information.

If you have a favorite reliable source, please share it in the comments! I always love to hear what you have to say!


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Side Effects of Prescriptions for Kids: A Cautionary Tale

Pills 3

photo by

The following is a story from my own experience. Thank GOODNESS I was paying attention. I’m sharing so that you always remember to pay attention, too.

Jenna was prescribed Rynatan the other day to (hopefully) help clear up her congestion. It’s an antihistamine/decongestant that helps dry up the mucus before it settles in her lungs and leads to pneumonia. We’ve given it to her before and, last year, we started it at the first signs of congestion and avoided the hospital for the first year ever. We needed a new prescription, though, and the doctor said it was no problem. She’d phone in an order for the generic version. We’ve always gotten the generic version in the past. When I picked up the prescription, I first noticed that the name on the label was different. I double checked with the pharmacist, who confirmed, yes, it WAS the generic version of Rynatan.

Here’s the kicker. I ALMOST threw away the insert that comes with the med. We’ve used it before. No problems. Why keep the insert? But I decided that since it had a different name, I should read it and keep it while she’s taking it. I read it, it sounded the same, and I gave her the first dose. About four hours later, we were sitting on the couch reading and snuggling when I noticed her heart rate seemed fast, so I timed it. 135 beats a minute – resting. I went to the internet and look up “normal heart rate for a five year old” (with no fever) and find that 135 is INDEED high. I went back to the medication package insert and read the side effects. Among the many possibilities, it says that if you experience serious side effects LIKE RAPID HEART RATE, you should immediately call your doctor. So I did. We ended up back at the doctor’s office, where her heart rate had climbed to 155 – resting, and was accompanied with shortness of breath. Turns out, there are many generic versions of most drugs, each with different manufacturers. Each manufacturer might use different ingredients/fillers. You, or your child might react differently to one generic brand than you did to another, including a potentially serious allergic reaction. Never just assume that, because you took a drug in the past, it’s generic version or a new generic version will work the same for you. Pay attention to how you feel on any new medication, and ALWAYS keep the package insert while you’re taking it. Never hesitate to call your doctor (or pharmacist) if you have questions or concerns.

I don’t know about you, but I just assumed that “the generic version” would have the SAME ingredients and make-up as the original. We all know what Benny Hill said about assuming….. Well, at least people as old as I am who know who Benny Hill is. *wink*

Anyway, now YOU know what I know, and we’re all a little wiser.

P.S. We stopped the med for Jenna, and her heart and breathing rates were back in the normal range this morning. She’s still very sick. Her lungs sounded worse this morning and she has a fever of 100F. We’re hoping that the oral steroids and inhalers that we started last night will really kick in today and we avoid full blown pneumonia and a trip to the hospital.


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I think an update is long overdue. Somehow, the hours of the day always seem to get away from me, and even though I’ve been meaning to post, the words just keep piling up in my head and never quite make it to the computer. Thanks for being so forgiving!

Jenna celebrated her birthday and now proudly tells anyone she can that she’s FIVE! It’s amazing what a difference one number can make. When she learned her dentist appointment was approaching (routine exam & cleaning), she started crying and whining but then caught herself. She took a deep breath and said softly to herself, “I’m five now. I can do this.” and she DID! With no crying or freaking out. I was so proud of her.

She’s now 44″ tall and weighs in at 43 pounds. She’s right smack on the “average” line on growth charts now. Quite an improvement from not even being on the curve! The blenderized formula is going phenomenally well, and we will soon transition to including her overnight feeding in this switch. At that point, all of her feeding will be with homemade formula. Yay! My main hurdle for this is step is finding a way to keep the calorie count up, but make the formula thin enough to feed through her pump overnight. We still run into trouble with the pump when we try to push homemade formula through. Our other option is to move all of her feeds to when she’s awake, but this means 5 feedings during the day. When you consider the fact that she wakes at 8 am, naps from 1-5, and goes to bed at 8 pm, there aren’t a lot of waking hours left to squeeze 5 feedings in! She’s awake a total of 8 hours and there are a lot of other things she (and we!) would like to do besides sitting still for a feeding. *Sigh* We’ll figure something out!

On the homemade formula side of things, I’ve started branching out to more than just my basic recipe that I posted before. It started when I was in a pinch one morning. She needed fed, and I didn’t have all the ingredients for my recipe (sorry to disappoint you if you thought I was perfectly organized all the time – ha!). This led to me looking around at what I had and essentially throwing things together. That morning, it was some oatmeal, fruit, yogurt, kefir and hemp butter. I realized that I would be thrilled if she ate that by mouth, so it should be fine to feed her by tube! Since then, I occasionally just “throw” things together that are handy. Having the core knowledge of fat, protein and calorie content helps a lot. I just try to throw in things that are balanced with the goodness she needs. My base recipe is still my staple, and I usually simply tweak that a little with different fruit & veggie additions, but every now and then, I mix it up with a few leftovers from dinner the night before, or something I have handy in the pantry. We haven’t had any problems with her tolerating anything (I still stay away from cow’s milk, since it upset her stomach in the past). It’s nice to have the added flexibility, and she seems to be maintaining or gaining weight just fine.

We’re still not having much improvement with oral eating. She nibbles, and she’ll occasionally try new things, but there aren’t too many calories being consumed that way. Suggesting to her that eating by mouth will mean no more tubes and pump is only met with extreme distress. She WANTS the tube to feed her! She NEVER wants her “special button” to be taken out. I think part of this is due to her thinking that taking it out permanently will hurt, but I think most of it is simply due to the fact that it’s all she has ever known. It’s kind of a part of her. Taking it out is the “unknown” and the unknown is usually scary. Our one bit of leverage is that she HATES having a new gastronomy button placed every 4 months. With a passion. She’s a little more receptive to the idea that eating by mouth means that we don’t have to keep changing the button, we just refrain from mentioning that there would be a one-last-time removal of the button along with that. The bottom line is that I think she just has to do this in her own time, when she is ready. I think we just have to stop trying to push our schedule. Always easier said than done.

We have basically hibernated through the winter and are feeling a little spring-feverish. We’ve worked on PT and OT here at home (though not as rigidly as if we had attended appointments), and we see improvements in lots of areas. She still really struggles with holding anything to write or draw with for an extended time. She fatigues very easily, and gets frustrated when she can’t make straight lines. Because she has no measurable grip strength, her lines all look very shaky and uneven. It’s a lot of work for her to control her muscles and a pencil or crayon. It’s hard for me to see her get so frustrated. She LOVES anything art-related, and loves to work at her easel, but she quickly fatigues from standing in one place. I finally found my way to an IKEA store (I had never been in one before) and found a Mammut stool that is PERFECT for her to work on at her easel. Sitting is hard for her to do for very long, too, but this makes it easy for her to stand for a while and then sit for a while.

Side note: I thought she might be struggling with some hyperactivity issues because she constantly shifts and fidgets when she’s sitting. She frequently slides one leg off the chair so that one knee remains on the chair while the other leg stands. I asked our therapist about this and she adamantly said that it’s NOT hyperactivity, it’s incredibly low core strength. She said that sitting still in a chair requires much more core strength than most people think and it’s very wearing for CP kiddos. So, really, ANY position for extended periods of time is tough for her, since she has low muscle tone everywhere.

Her sensory processing issues are much, MUCH better overall. She still hates loud noises and will cover her ears and complain, but at least she doesn’t immediately meltdown or scream in terror. She is still very sensitive to bright sunlight, but as long as we always have her sunglasses along, she manages without melting down. She has much more tolerance for touching a variety of textures and will now even play with her “slime” or in sand without freaking out and resisting. She still has definite sensory seeking or sensory avoidant days, but we’re getting used to her signals and learning how to adjust to what she needs. We were having a lot of trouble with her settling for sleep, but then remembered her weighted blanket (thanks, Jenn!). It makes a world of difference, and she’s been sleeping with it every night. Her other big hurdle was her oral fixation and the tendency to put fingers and objects in her mouth. Her chewy necklace has really helped with this. I actually ordered the Kid Companion necklace for her, and she hated it. Boo. She said it was “too hard.” She loves that the teether is more “squishy” and has more give when she bites. The good news is, I kept the lanyard from the Kid Companion and used it to solve our necklace problem. Perfect! She does get a few weird looks when she’s wearing a teether in public, but who really cares?

She struggles a lot with shortness of breath and wheezing. It’s frustrating for her when she’s around other kids, because she wants to run and chase like they are, but when they are just getting wound up, she is exhausted. She frequently has to announce that she needs to rest and sits down, gasping for breath while the other kids continue obliviously. It’s hard for me to watch because I feel sad for her. Our pulmonologist appointment is coming up in May, so we’ll see what he has to say at that point.

We thought we had escaped the dreaded crud of cold and flu season this year, but yesterday she started with something the doctor thinks is viral. She’s completely congested, running a fever (101 this morning), and coughs whenever she lays down, which makes it really hard to sleep. We’re pushing lots of fluids, trying to make sure she gets lots of rest and starting Rynatan to hopefully dry up all the mucus before it moves to her lungs. We’ve had a lot of success over the last year if we start Rynatan at the first sign of any cold/flu congestion. It’s such a relief to have something that helps us dodge pneumonia and hospitalization.

We’re heading to FL for a couple of weeks in just a couple of weeks. The sunshine and warmth will be good for us all. Jenna’s uncle is getting married down there, and between a wedding, seeing her grandma and grandpa and the fact that we’re renting a PINK cottage, she couldn’t be more excited.

I’ll try to do better at posting more ideas for home therapy and maybe a recipe or two now and then. Until then, if you have any questions about where we’re at or what we’re doing, please feel free to ask in the comments or email me at psychmamma1 {at}


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And Then You Die

cigarettephoto by lanier67


Jenna is currently fascinated by cigarettes and smoking. L and I don’t smoke (never have), but this makes her even more curious about the people that she sees doing it. She notices cigarettes everywhere. In the store, on the ground, on a sign – you name it. Because she has chronic lung disease (BPD) and her lungs are already such a mess, the mom in me freaks out a little with worry, and I feel like I need to make sure she understands the dangers involved with smoking. Then, I worry that too much warning will push her toward rebellion and trying it EXACTLY BECAUSE I explained why not to. This is how my brain works. *sigh*  L, on the other hand, is Mr. Eternally-Laid-Back. He tells me not to fret because it would probably hurt so bad when/if she ever took her first puff that she’d never do it again.

Anyhoo, I DID have a conversation with Jenna about cigarettes that went something like this:

J: Mommy, why are those people making smoke come out of their mouths outside?

Me: Well, they’re smoking a cigarette, and they’re not allowed to smoke inside.

J: Why not?

Me: Breathing in the smoke is bad for your lungs, and if they smoked inside, all the smoke would stay inside the building and even people who didn’t want to smoke would be breathing it in their lungs. It’s a rule they made to help keep people healthy.

J: {thinks a moment} Why is smoke bad for your lungs?

Me: Remember the book about the human body we looked at with pictures of the lungs? Remember how the lungs were all pink with lots of open tubes inside for the air to go through? When you smoke, the smoke gets all over inside your lungs and makes them look black instead of pink. After a while, the lungs can’t work right because all of the dirty smoke makes the air tubes close up & the air can’t get through. It makes people have trouble breathing, sometimes cough, and can make them very sick.

J: And then they die? (because this wonderfully curious small girl is also completely fascinated by death)

Me: ……….Yeeeesssss. Sometimes it can even make people die.

J: So, the people who smoke WANT to die?

Me: Noooooo. I don’t think the people who smoke WANT to die.

This then led into an entire discussion about consequences, which she understands a little better, and the fact that even though sometimes people know that there might be a bad consequence for something they do, they still choose to do it. Probably HOPING that the bad consequence WON’T happen,  even though it usually does.

Whew. It’s HARD to think up adequate answers, hopefully full of wisdom, that are on the level of a five year old!

Fast forward to today.

We came out of CVS to see (& smell) a man smoking. J tugs on my hand, partially covers her mouth, and in a dramatic stage whisper that was none-too-whispery exclaims:

“Mommy! That man is going to DIE because he’s smoking.”

And then *I* died of mortal embarrassment.



Posted by on March 10, 2011 in Health, Jenna


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