Sunday, February 11, 2018

Feeding Tube Awareness Week 2018

Yes, I am almost a week behind as I normally post on Wednesday's, but this past week has been treacherous to say the least. Anything that can go wrong has gong wrong. My internet connection has been spotty at best despited being repaired, my car had to go to the shop on a trailer, on and on and on.

So  yes, I am a little behind.


Last week was Feeding Tube Awareness Week, with the theme of "changing the face of fed". I have been on the topic of blended diet for several weeks. I have more to discuss over the next few weeks, but for this post I am going to observe changing the face of fed.

Not only are tube fed children and adults not living off of canned medical milkshakes anymore, but the reasons for having a tube are vast. There are those in society who picture only severly disabled individuals having a tube. Bed ridden and unaware of of their sourroundings, however this is just not true.

Feeding tubes can be used for those who have severe G.I. disorders where the stomach needs to be bypassed to avoid vomiting.

Feeding tubes can be used for infants and small children who have severe reflux and refuse to eat orally, or if they do eat orally, it just come right back up. A feeding tube will allow a pump to provide a very slow feed over several hours to avoid vomiting. Again, sometimes even bypassing the stomach.

Feeding tubes can also be used for infants born with cranofacial challenges that do not a allow them to suck from breast or bottle either at all or sufficently, even if they could swallow and tolerate milk just fine.

Nobody wants to see their child have to eat through a tube. Anyone in the feeding tube community would rather see their child not have to struggle and suffer with whatever disorder that created the need for the tube. There is nothing more annoying than to have people say nonsense like "don't feed him, he'll get hungry and start eating" or "I can get any kid to eat, you must be babying him too much". These are things that make the parent of a tube fed kid suddenly need bail money. Just be quiet if you do not understand the complexity behind the reasons for feeding tubes.



For John, it was a mix of hypotonia, poor coordination, reflux and lack of weight gain that caused his need for a tube. He recieves speech therepy now to work with his many aversions and sensory senstivites. We are working on it, but he still has a long way to go. He is behind in some ways, but so typical for his age in others.

 



John looks for things to get into, adores his big brother, is on par for talking, and does NOT like the word "no". He can throw one heck of a tantrum!

Bedtime Reading

                                         
                                             The Bat Cave
Brothers in the Bat Cave



I hope everyone had a wonderful #feedingtubeawareness week! 



Tuesday, January 30, 2018

A Typical Blended Meal

Everyday is different, just like you and I eat different things everyday. But...how is it done, and what is somewhat typical to blend?

Well, it depends on what is on sale or what I feel adventurous on trying to steam and blend. I have made puree's out of the average stuff. Carrots, bananas, and green beans. I have also ventured into puree' kale, mustard greens,  spaghetti squash and plums.

FYI: plums DO NOT  blend well. Not impossible, but would take a lot more work than I'm willing to put in. Maybe one day I will try again. They need to be de-seeded and peeled. The skin just does not fully blend, leaving tiny pieces which clog the tube line. A commercial blender might do the trick, but that's not what I have to work with right now. Oh, and the seeds won't just break loose so you can pick them out. Even a standard blender will grind them quickly, which you will never be able to fully pick out. It's like trying to pick glitter out of a glass. Good luck with that.

His breakfast blend is typically the same menu, just a different fruit each day. It consists of a fruit, infant cereal, probiotic, and milk. Sometimes I will scramble an egg to throw in.

Recipe I came up with:

4-5 oz of puree' fruit
1/4 cup of infant oatmeal or other infant cereal
1 scrambled egg (optional and not fed everyday)
1 cup of milk
water as needed to thin down the blend

John's lunch and dinner blend is usually a blend that is large enough in volume to go the rest of the day. This blend will be a meat and two vegetables, avocado or pecan oil, and a juice.

Recipe I came up with:

4-5 oz of puree' vegetable
4-5 oz of puree' vegetable
1 2.5 oz jar of baby food meat
2 tbsp of oil (I use either avocado or pecan)
1 cup of juice (I often use vegetable juice, but change up between apple, orange and grape juices)
water as needed to thin down the blend

This works for us. Some days when I need to do more puree'ing and stocking the freezer I will only use one puree' vegetable. This is hit and miss though, also there are days where I might blend a soup for him instead. That may only last one or two feedings though. My goal is to provide John's body as much variety as any other kid would get. He probably gets better variety than any other kid since I bypass the taste buds and the "ew that looks gross" obstacle.

It is a lot of work, but my once failing to thrive baby is now a fat baby/toddler. His reflux is so much better than it used to be. Even with several medications, we used to deal with frequent vomiting. Now he rarely vomits, and he's nearly weaned off of one of his GI medications.

Is a blended diet better than commercial formula? I'd say the proof is in the pudding.


Take care until next week.


Wednesday, January 24, 2018

Real Food Blends

In my previous post about blended diet I mentioned that there are commercially made real food formulas. Most of these are garbage, and I will dive into that in a later post.

The product that we use for either on the go or days I don't have time to blend is Real Food Blends (RFB). Of the few good real food formulas out there, I chose this one because there is not formula aspect to it. No corn or brown rice syrup additives and high sugar count. Literally true to its name, just a few ingredients of real food.



The company was started by a couple who have a child who suddenly developed medical complexities, and became tube fed as a result. As so many in the tube feeding community, their child had so many issues with the standard commercial formulas. They ended up searching outside the box and outside the medical text book for answers. They discovered the blended diet, which was a great turn around for their child. As they later began to plan a family vacation, they realized how difficult it would be to tote a blender around along with fresh foods. Their light bulbs went off and the idea for a pre-packaged meal for a feeding tube was born. Learn more HERE.

The only downside is the company makes only five blends, so the variety of foods is lacking for everyday use. On top of there only be five varieties, not all medical supply companies carry all five. Our DME company offers four, and the vegan blend I was told was funkier than the rest if burped or vomited; so I opted out of this one. We receive three types of blends each month.

At first I was using it on an everyday basis because it was easier to calculate his daily calories. I was adding in other puree baby foods to supplement the lack of food variety. This resulted in waste if the whole blend was not used within 24 hours. RFB is shelf stable but still has a limited "hang time" (the time a product can hang in a feeding back) compared to traditional formula. I was getting up every two hours during the night to replenish the feeding bag. I was dying to say the least. I opted to use the dreaded Pedisure for overnights.

As I learned over time what had how many calories in it, I began to focus less on my spread sheet and just make my own blends full of variety. John has gained weight beautifully, he is a fat and happy toddler-baby! Although our daily routine no longer includes RFB, it is a fantastic product for long distance doctor's visits, time crunches, or for people who want to switch to real foods but still learning how to blend from scratch.



Have a great week!










Tuesday, January 16, 2018

The Blended Tubie Diet

No, this isn't a pitch for some New Year's weight loss thing.

Blended diet is what John eats, through his tube that is. Blended diet is real food blended in a blender, liquid added and made into a thin puree. A puree thin enough to flow through a tube. I suppose no one ever thinks about "tube food" unless they have been touched by it in some way. I am not sure when blended diet came into exsistance, but it is rapidly gaining traction. Not only are there various resources for "how to's" available around the web, but there are commercially made real foods as well. The one in particular I use on occasion is Real Food Blends, but mostly I blend his food daily.

For a very long time if a patient had a g-tube, they were fed commercial formula of some kind. Much like baby formula if you need a visual. There are several popular brands that most of population doesn't realize is "formula", and that is Ensure for adults and Pedisure for children. We think of these products as drinks to fill in the gaps for picky eaters, but they are technically medical food. They are also popular choices for tube feeding, however they are far from being the only products on the market. Even the Feeding Tube Awareness Awarness organization has limited information on blended diet.

I first heard about blended diet when I started looking outside of the text book box when John was around eight months old. We had been through ALL the formulas, including Elecare and Alfamino. Elecare and Alfamino are amnio-acid based elemental formulas; more or less a baby protein shake. Oh, and they cost around $50 per twelve ounce can! I will not go into extensive story, but his doctor felt it was best for him to get a GJ-tube for the time being until we figured out the right medicines to better control his vomiting. After turning one, we transitioned over to the blended diet and back to a standard G-tube. The vomiting all but stopped with the transition! Yes, there are medicines working to help, he was a little older and had grown, he had fully healed from his surgeries. There are multiple factors, but I truly believe giving him age appropriate real food made a huge difference.

While blended diet is still gaining traction, there has been an established method to the diet in blended diet circles. It consists of expensive commercial blenders, organic food, oils and other random things you would never think of. These expensive blenders are a little out of my reach for the time being, but I was determined to give John real food. I first turned to the commercial real food formulas. We first tried Compleat, we didn't use it long and I will dive into that in a later blog. We then got our hands on Real Food Blends and added things to it to make it as much of a balanced diet as possible. That resulted in very large batches that went to waste, and the base of the blend still lacked variety. SO.....I kept reading through the groups and learned a few hacks using baby food purees. Then I got to thinking about people who make their own baby food. If I'm using baby food anyway...I could be making our own purees, making a wider variety and be fresher. Why was I spending oodles on baby foods?? So that is what I began doing, I spend a lot of time in the kitchen steaming, blending and washing the blender; but it is working out really well. I do not think I do it like anyone else, but it works for us. John is fat, happy and growing so well, and that is the most important factor in the big picture.

Examples of my puree's, blueberries and kale.




Have a great week, and be careful with all the winter weather!



















Saturday, January 6, 2018

Why is everyone on a journey?

In this day and age of the internet and social media, everywhere you turn you will run smack into other people's journey's. There is no shortage of blogs about journeys. All kinds of journeys, becoming debt free journeys, career journeys, weight loss journeys. Oh man, the journeys focused on various parenting styles. Certainly no shortage of those, single moms, crunchy moms, attachment parenting advocates; nearly any niche you could thing of it is out there. Maybe I don't have much room to talk, because here I am writing on a parenting blog, and crossing my fingers that I don't sound like "one of those".

Once upon a time, in both real life and in this blog...actually it was the purpose of starting this blog, that I/we were on an "infertility journey".  Occasionally I look back at entries from years ago, and sometimes I cringe! Even five or six years ago it was a theme in social media that was gaining momentum. I'm not sure how long it had been going on, as I had not paid attention. There was not a topic that touched in such as way as my miscarriage and subsequent infertility did, that I sought out support. It was in the private groups where it seems like it started, but as posts got lost and missed in a sea of posts about random questions, the stories evolved into blogs. Those blogs needed names, now everyone was on a journey for the two pink lines, or Susie and Bob's journey to parenthood, journey this, journey that.

GUILTY 
                                                   

I too jumped on that band wagon, and here we are now as we speak. It is easy to get caught up in a moment, or an emotion and feel like you are working harder than others. It is a rough journey, a bumpy journey, a journey with twists and turns blah blah blah. This theme branched into other topics, as mentioned above. You can find a blog or social media page documenting people's "journey's" of various kinds.

As crappy as some obstacles or situations may be, and as crappy as it is for bad things to happen to good people; this is just life. Shit happens in life. Life is harder for some than others, it is not fair but nobody said life would be fair. Nor is it promised that life will be happy happy A L L the time.

As for the blogs and pages I used to follow, I don't know where most of those people are today. I also do not know if those blogs and pages evolved into other things, sitting collecting dust, or deleted over time. A few however never ceased to get off a treacherous journey, even if infertility was conquered, there is always something else to take its place. Always! I just simply stopped following over time. I have tried to evolve this blog over time, and I hope I've been successful.

Life is life, and we are all just living. The good, bad, ugly and in between. Step off the journey please!








Wednesday, September 13, 2017

LipSense Review

This is a review for the product LipSense, which is made by Senegence. Senegence makes a range of cosmetics, but this review is solely for LipSense. 

I tried the color Fly Girl, which is an intense bold red! I have always loved red lip color, and have bought several brands over the years. Fly Girl is the most stand out red lip color I have ever seen! Like WOW WEE, I felt like I should be jumping on disco ball and swinging around. It made me want to party! 




LipSense is a two step system and long lasting, no smudge lip color. Not to be confused with lip stains, and definitely not a lipstick. It is a league of its own! Once applied, the color adheres to your lips, three coats is recommended, then sealed with their ultra moisturizing gloss. Although long lasting, LipSense has a rather broad range of potential wear, which is 4 - 18 hours. 

LipSense is available is multiple colors and shades, and their gloss is available in clear gloss, and gold, silver, and pink glitter. You can also make custom colors by combining LipSense colors, and also the colored glosses aid in making custom looks as well. 

You can order your Fly Girl, or any other lovely color at Red Gate Beauty, and receive a 15% discount with code bloggymoms15

xoxo


Sunday, September 3, 2017

Noonan Syndrome...What is It?

In my prior posts I mentioned that NICU doctors suspected John had Noonan Syndrome (NS), and most of his characteristics fit the syndrome. He was tested at six weeks old while he was in the hospital being evaluated for his G-tube. It took about a month to get results back, but it confirmed suspicions of several doctors.

NS is named for Jacqueline Noonan, a pediatric cardiologist who connected the dots between several similar characteristics in 1962. Reports of several symptoms date back to the 1800's, but no one had tied all the information together until then.

NS patients can be effected by a wide variety of symptoms and characteristics. The more common ones tend to be craniofacial characteristics such as short neck, eyelids that appear to be "droopy", and an overall large head. Heart defects are common, blood disorders are common, short stature is common. I'm not trying to write a medical research paper here, so I won't bore you with lots of details. However, if you are curious there are links at the end of this post that includes in depth information.

Oh, but one last thing before I move on...NS is NOT the "boy version of Turner Syndrome". ARRGGG! Such outdated statement to make! There is also more on that in the links at the bottom.



John has the common craniofacial characteristics, he has the "droopy" eyelids and I am often asked by strangers if it is his nap time. He has a somewhat large head, the short neck and he had the webbed skin on his neck at birth. He grew into the extra skin in time and still is growing into it to some extent. Despite his appearance, he is still outrageously adorable! Perhaps I am biased though?

He also deals with Failure to Thrive, this resulted in his receiving a G-tube which was later turned into a GJ-tube and provides all his nutrition. Poor eating is ties into his poor muscle tone, sucking a bottle or breast takes a lot of effort and energy for someone with low or poor muscle tone. He just could not sustain himself to a healthy threshold. I can't even count how many questions the tube hanging out of his clothes has brought! What is THAT? What is wrong with him? Will that always be there? Why does he need it? My answers have become calloused over time. I used to try to explain it in the very beginning, but now my answers are more like "it's complicated", "it's a long story", and then promptly ignoring the person.




John had open heart surgery when he was five months old to correct his Pulmonary Valve Stenosis. That was a very scary experience but he came out like a warrior!


Today, John is well and medically stable. We are working on all his skills to close as much developmental delay gap as possible. I believe he will do great things in life and NS will not define him!




xoxo




Noonan Syndrome - A rare disease

Noonan Syndrome History