4 Tips for Dealing with Case Management

March 13, 2016 By in Caregiver Tips & Tricks Tags: , , , , , , , , Leave a comment
4 Tips for Dealing with Case Management

This week the case for our son’s feeding supplies and his formula was approved by the insurance company. We changed companies the first of the year and I began working to get the case set up with the new insurance company prior to the swap. Approval came almost exactly three months to the day after beginning the process.

Why did it take three months? Many, as in more than four or five, well-intentioned people thought they knew how to take care of the case and it turns out they were wrong. How could so many people be wrong? Some were new and simply didn’t know the answer. Most had been at their job for a while but things had changed and no one bothered to inform them. Everyone I spoke to was trying their best to help.

If you’ve never gone through this process before it may come as a surprise. Three months is actually not that bad to get everything in place if you’re changing insurance companies. Having a child with medical needs which require case management approval makes changing insurance companies complicated. Now that we’ve gotten through the process I feel comfortable sharing some tips on managing insurance companies, case management companies, supply companies, and frankly any large organization.

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Big Changes this Spring

March 7, 2016 By in Noonan Syndrome-Like Disorder, Our Family's Journey Leave a comment
Big Changes this Spring

Our son is two years old now and with that came the opportunity to check if his milk and egg allergies had faded with no exposure. A mistake by the lab prevented us from finding out the status of the egg allergy. The milk allergy, however, seems to be completely gone! That alone is good news but there’s even better news. We can finally try another formula. Formula options are extremely limited when your child is Failure to Thrive and allergic to milk.

Formulas can be mixed to different concentrations and it wasn’t appropriate to mix our current formula beyond 30 calories per ounce. The formula we’re transitioning to now is 45 calories per ounce. This gives us a lot of flexibility. Primarily, it’s allowing us to go from five feedings a day down to four. The last feeding of the evening was always while our son was asleep and it significantly worsened his reflux. We’re excited to see it go.

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How to Decide if Working for Yourself is Right for You

February 29, 2016 By in Money Tags: , , , Leave a comment
How to Decide if Working for Yourself is Right for You

Working for yourself definitely sounds amazing. Everyone I’ve talked to about my new journey has thought the idea is wonderful. It’s easy to agree setting your own hours is a nice perk. I decide what projects to start, which projects to end, and what makes something “finished.” There are pros and cons to the whole process and some of the cons aren’t so obvious, so I thought it would be helpful to mention a few of each.

The benefits are most of what you hear people talk about when they say they work for or would like to work for themselves. The primary advantage is setting your own hours and deciding how much time to commit to each task. There’s no one telling you they need you to be available from 9 am to 5 pm. It’s likely you’ll find a lot of the things you need to do can be taken care of at 2 am just as well as 9 am. Your work can be accomplished in your pajamas… in front of a TV… with a glass of wine on the side table.

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Transitioning Formulas

February 22, 2016 By in Caregiver Tips & Tricks Tags: , , Leave a comment
Transitioning Formulas

The process of transitioning from one formula to another should be done under the guidance of your child’s pediatrician.

There are many reasons you might change your child’s formula. Some of them aren’t medical at all. The price may simply go up on the one you’re using and you decide to switch to a less expensive brand. For the purpose of this discussion, I’m going to focus on the medical reasons. I’ve listed some common medical reasons below.

  1. Gas / Fussiness
  2. Mucousy stool
  3. Bloody stool
  4. Vomiting / Poor weight gain
  5. Constipation
  6. Diarrhea

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Quitting My Job and Starting New

February 15, 2016 By in Our Family's Journey Tags: , , , , , , , 8 Comments
Quitting My Job and Starting New

I took a huge leap last week and put in my two weeks notice. My supervisor and I had both been putting off the decision hoping my son’s health would improve and I would be able to return to work. The kid has made tremendous progress but still falls short of where he would need to be to be placed in a childcare center with other kids his age.

I have mixed feelings about the whole thing. Keeping my job would have been my primary goal prior to having our son. Having a child didn’t change that significantly but there’s more to it than that. Now I have a child that REALLY needs me. It’s not a change of heart as much as it’s a change of circumstance. I didn’t know my son would have low muscle tone, a feeding tube, and feeding difficulties when we decided to have him. Now that I know, it simply doesn’t make sense to leave him unless there are no other alternatives.

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Happy Valentine’s Day!

February 14, 2016 By in Valentine's Day Tags: , , Leave a comment
Happy Valentine’s Day!

From our family to yours, wishing you all a happy Valentine’s Day. ❤

Image credit: source unknown

Life with a Tubie

February 8, 2016 By in Feeding Tube Tags: , , , , Leave a comment
Life with a Tubie

In honor of Feeding Tube Awareness Week, I thought it would be interesting to share what it’s like to have a child with a feeding tube. Yes, there are differences in how we do things sometimes but not as many as you might think. Not every family’s experience is the same so there may be some significant differences between our routine and someone else’s.

The first thing we do when our son wakes up is feed him. We have a schedule but it’s flexible enough we don’t need to wake him earlier than he’s ready to get up. He still drinks from a bottle even though he’s almost 2 years old because, typically, kids drink less when they transition from a bottle. Once he’s eaten as much as he wants we vent the air out of his tube. After, we feed him the rest of his food by gravity. We attach a syringe to his feeding tube without the plunger and pour his formula into the syringe. We allow his stomach to accept the food at whatever rate it’s comfortable and read books while he’s being fed. For most of this process, he sits or lays in my lap. We read two to three books during the remainder of the feeding keeping him relaxed and comfortable. We repeat the feeding process every three to four hours.

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Noonan Syndrome Awareness Month

February 1, 2016 By in Noonan Syndrome-Like Disorder Tags: , , , , , , , , 3 Comments
Noonan Syndrome Awareness Month

February is Noonan Syndrome awareness month, so I would like to share some information about the condition I’ve learned through my journey with our son. It’s a genetic diagnosis. Our son was diagnosed in late 2015 through whole exome sequencing. There are characteristic facial features for Noonan Syndrome and a large head size is common.

Many children with Noonan Syndrome need feeding tubes. Even if a feeding tube isn’t necessary they’re likely to need some kind of high-calorie drink or formula to supplement their diet so they can gain weight. Those with feeding tubes do have a reasonably high chance of outgrowing the need for one if they do not have an oral aversion.

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Teaching a Tubie to Eat

January 25, 2016 By in Feeding Tube 2 Comments
Teaching a Tubie to Eat

I’ve come to realize parents whose children don’t have feeding difficulties take a lot of the learning process around eating for granted. Opening your mouth for food when it’s given to you is a learned behavior. Not choking on it once it’s in your mouth is a skill acquired through placing things in your mouth over and over again until your gag reflex is pushed back to its appropriate location. Chewing is a learned behavior as well as moving your tongue from side to side in order to place it appropriately between your teeth.

Motivation is the key to helping this process along and many children enjoy eating. They like the taste of food and they like the feeling they get when their belly is full. When a child’s tummy is frequently upset or it hurts to swallow they lose the motivation to swallow their food. Sometimes that causes children not to want anything in their mouth at all. Other times a child who loves to taste food will refuse to swallow and spits it back out once they’re finished with it. One thing I can guarantee, if you try to force a child to eat who isn’t eating because of pain or discomfort they will most certainly be one who does not permit anything in their mouth whatsoever.

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Emergency Preparedness – Snow

January 21, 2016 By in Special Topics Tags: , , , , Leave a comment

Depending where you live, you’re going to see a lot of snow this weekend. It’s coming down heavy. There will be high winds and low enough temperatures to ensure the roads will be impassable for some time. There are standard rules of thumb to follow. Have batteries, a radio which takes them, enough food, and a gallon of water per person per day. Typical preparation is for three days. We have our kids to think about, though, and they can require a little extra preparation.

Check your supplies. Make sure you have enough formula to last you through the weekend. Verify you have a spare of whatever might need replacing in the case of an emergency. Expect the power to go out. It’s probably too late to get a generator now, but if you need uninterrupted power for medical equipment, make plans with your admitting physician ahead of time to have a direct admission in the event of an outage. Don’t forget the gas for the generator.

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