Tag Archives: special needs children

Beach Dance

I know I’ve been largely absent here, and I apologize. I have a million posts in my head, but they’re just not making it into this computer.

Right now, Jenna and I are in Florida, soaking up as much Vitamin D as we can! We’ve been in the pool at least once pretty much every day, and most of the time, twice. It’s fantastic therapy for Jenna and she loves it. We have to tell her it’s time to get out every time. I think she would live in the pool if she could. She isn’t swimming yet, but she’s SO close! She has no qualms about getting her head under the water, and does an adorable little pseudo-swim where she holds her nose, kicks her feet and paddles with one hand while her little butt is up in the air. She stops and stands up when she needs a breath, then starts again. You can check out my Flickr photo stream (in the right margin) for a couple brief video clips.

The other day, it was too cold for the pool (around 70F and windy), so we decided to take a walk on the beach. I have to share a series of photos from our walk that I just love. We were headed back to the car, and she got a little way ahead of me. I noticed that she was doing a funny kind of little beach dance with her feet and I started shooting photos (she didn’t know I was shooting). As I watched and photographed, I realized that she was trying to make a horizontal line of footprints. I captured her finished work at the end of the series.


Some serious pronation going on – especially with her right foot. Need to ask our ortho team about it.

And a couple of extras from the photo shoot – just for fun:

Have a fantastic day!


Posted by on April 26, 2012 in Family, Jenna, Motherhood, Photography, Random Fun


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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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Fire Safety For Kids

firephoto by matthewvenn

We were in Chicago over the weekend and visited the Children’s Museum at Navy Pier. If you ever have a chance to go, I highly recommend it. One of their exhibits is on fire safety. There is a firetruck to climb on, fireman costumes to dress up in, pretend hoses to spray, flashing lights, radios, and a bedroom with lightweight fabric draped all around to simulate smoke. The bedroom is to train kids to “get low and go” to stay under the smoke. They find their way in the dark, under the hanging “smoke.” It’s a great opportunity to talk to kids about fire safety. They had brochures for parents to pick up, so I did. I know we need to work a little more on a concrete plan.

Here are the 10 Steps to Fire Safety (from the Chicago Fire Department):

Smoke Detectors Save Lives! Put a smoke detector outside your sleeping areas. Change batteries twice a year (when you change your clocks) and test them monthly so kids can hear the beeping sound.

Have an Escape Plan! Create and practice escape routes from different areas of your house – especially from your bedrooms at night.

Sleep With Doors Shut! Fire travels through open areas first. Closed doors help keep fire and smoke from spreading.

Get Low and Go! Smoke and heat rise toward the ceiling. Air is more breathable near the floor.

Never Hide – Crawl Outside! Young children may fear the sights and sounds of firefighting equipment. Talk about why they should NEVER hide from firefighters, no matter what.

Know Two Ways Out! A fire may block a certain path. Know two ways out of the house or building.

Feel Every Door! As you crawl, feel doors with the back of your hand. Don’t open a door if it’s hot – there may be flames on the other side.

Go to the Family Meeting Place! Make sure everyone knows where to meet after they leave the home (a neighbor’s house, street corner, or particular tree).

Call 911 for Help! It’s OK to scream and yell in an emergency. Find a neighbor and call 911.

Practice Your Escape Plan! Practicing how to exit your home in a fire is the BEST way to prepare.

If your child has disabilities, call your local fire department’s non-emergency number and explain your family’s situation. They can suggest escape plans, perform a home fire-safety inspection, and recommend special equipment, such as smoke alarms with flashing lights and vibrating elements to place under pillows.

More information for those with disabilities:

U.S. Fire Administration

Great books for kids:

A Day with Firefighters

Fighting Fires

Firefighters A to Z

Fire Truck

I Want to be a Firefighter

No Dragons for Tea: Fire Safety for Kids (and Dragons) – we love!

Free coloring book download

If your child is curious about fires, the bedroom is the most common place for children to “play” with fire. If you suspect your child is experimenting, look for burnt matches or burn marks under your child’s bed, desk or in the closet, and GET EXPERT ADVICE.

Hopefully, you never need any of this information, but if you do, preparedness is key and can truly save lives.

Leave a comment

Posted by on August 23, 2011 in Parenting tips, Special Needs


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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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Teaching Kids About Personal Space

Check out my review of the book Personal Space Camp at Shop Sensory today!


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A Labyrinth for Calming Stress Relief

Check out my post at Shop Sensory on a fun & calming activity for kiddos and adults alike!


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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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