Two Years Old (or in medical terms 27 mo. 10 days)

Where have we been?  How is Noah doing?  How are we doing?

Summary of our past six months:
Life happened...plain and simple.  We have had some horrible hospital stays and we have had some amazing adventures.  We have had holidays and family and friend get togethers.   We have seen seasons change and have watched Noah as well as my belly grow bigger and bigger every day.  Noah will become a big brother to two new siblings come late July early August.  Like I said...life just happened and we have been living it to our fullest as much as possible.  There have been many tears (mostly on my part) but way more laughter (on everyones part).  I think every single emotion a person can feel has been felt.  We have experienced some high highs and some low lows but right this second as I type these words we are just happy and content.

And here is why.......

Our Super Hero

Noah turned 2 on November 10th.  For some reason it has been like a light turned on for him.  Things have been happened for him and us.  Things we can't even explain.  Things that may look tiny to the average eye but are massive to those who get the privileged of Noahs company on a regular basis.

NOAHS CURRENT STATS:
Length: 38inches
weight: 26 pounds
head circumference:  barely touching the bottom of the charts (but on the charts nonetheless)
seizures: none :) yay!
fed: G Tube, blended diet, off night feeds
voice: no words yet but babbles constantly
favorite things: bouncing in jumpers, books, music, laughing, his silky blanket, his binkie, when daddy tickles his neck, the sun and wind, the wheels on the bus song and our lullaby we sing him.

Super Hero with his Super glasses

EYES & GLASSES: Today Noah wears glasses.  Cute blue round rubber glasses that make him look like Harry Potter in a way.  They wrap around his head and he doesn't seem to mind them at all.  This opened up a whole new world for him.  The first time Noah has ever really been given the opportunity to see everything around him.  He now will follow objects we put in front of him.  He will now turn his head to see his daddy coming through the door.  He will now let us try to spoon feed him because he can see the spoon coming at his face and it isn't scary anymore.  The best part...he is looking at us, in our eyes...do you know how precious these moment are for us.  We waited two years for our son to see us.  Its a wonderful feeling.

Rx: He is still blind in his left eye but his right eye is a +4 far-sided so he qualified for glasses finally.  Every other time we went to see his eye doc he was sleeping, crying, or they couldn't get a good read on his prescription.  If you can, try to get your child in glasses asap if they do have a prescription.  It is life changing. 

HYPOTONIA (ARMS, TRUNK, and LEGS):  Noahs arms and legs are getting stronger.  He still wouldn't be signing up for a muscleman competition but we are seeing some major improvements.  His legs are by far the strongest part of his body.  He is now fully standing (totally supported) and prefers to be in a standing position apposed to sitting.  He still is not sitting unassisted yet. He still is in love with the door jumper but is totally too big for them and has since broke it a couple times.  We are in the process of ordering a Merry Muscles for him.  We purchased the infant size (too small) and will be upgrading to the special needs version here soon.  He is still wearing his DAFO leg braces most days and this helps him use his ankles the appropriate way. He wants to bend his right foot under his ankle when it is not being supported.  We try to correct this as much as possible.

His left arm is much stronger than his right and is therefore holding objects for extended periods of time now (around 5 minutes).  His grip with this hand is also very strong.  He can put weight through this right arm for around 30 seconds on his own.  His left arm is much weaker but his therapist likes to call this his "helping hand" instead of his "weak hand".  In the past month or so we have really seen his left arm/hand start to figure things out.  He can hold things for about 30 seconds with this hand now.  He can also lift this arm up at the shoulder where before he couldn't.  We practice with him daily on holding things and pushing weight through his shoulders, elbows, wrists, and fingers.  We are noticing some major progress.

His trunk is starting to really get stronger.  He still bends over hunch back style most of the time but he can and will sit upright.  He just does not have the endurance to hold it that way for very long.  This is what keeps us from being able to sit him in typical chairs, shopping carts, swings, ect.  He just doesn't have the endurance yet.  His abdominal muscles are getting really defined due to swim therapy and his lower back muscles are almost too strong, which is why it is so easy for him to throw himself backward.  His upper torso is the weakest part of his body along with his shoulders.  There isnt much we can do with him to build these areas.  Time is the only thing that will.  We will be patient. 

SITTING:  Not totally there yet.  He has about 99% head control but if you were to lift him from a lying position his head still lags behind.  He also gets really lazy in the sitting position and if he knows there is anything behind him (person, pillow, chair, ect) he will automatically throw himself back to rest on whatever might be there. He has this aversion to sitting forward and still throws his arms back behind him in both the sitting and standing positions to equal out the weight of his head and body being forced forward.  We are working on this one. Sitting aids and chairs are still a major concern for me and I have attempted/failed three times at making my own chair for him.  Still not sure what to do there that doesn't cost us a small fortune. We just ordered a Leckey Firefly seat in hopes this will allow us to bring him places easier than it has been with his wheelchair or stroller.

COGNITION:  We never really know what Noah is thinking but we usually always know what he is feeling.  He lets us know if he is sad, hurt, hungry, tired, happy, giggly or all the inbetween.  We have learned his own language through is sounds and the way he is acting.  Very much like an infant really but we have the advantage of the years of experience to let us know if we are going in the right direction with what he is needing.  We know he knows who certain people are for sure.  We know he understands when he has his favorite blankets vs any other blanket.  We know he understands his type of binkie he likes and we know how to make him laugh.  We have figured out how to calm him and sooth him and we have a good understanding of how much he can endure.  One that I think no parent should have to learn so quickly but it has been good for us in hospital situations.  I know he understands the difference between certain cartoons and types of music.  He becomes really chatty when there are many people talking around him or if the tv is loud....like he is joining in on the conversation.  We know stuff is going on in his brain but until we can communicate with him somehow we are not sure how to tap into a majority of it.  Now that he is seeing a little we will be starting with sign language here shortly. Hopefully once he can use his arms better maybe he will be able to sign one day too. 

Lokomat

Swim therapy

THERAPY: Noah goes to a clinic called Neuroworx twice a week.  One day he does swim therapy in the pool and the other day he does a machine called a Lokomat.  We call this his robot days.  When we are not doing the robot we have him doing balancing exercises on a vibration plate to stimulate his nerves and give him a lot of sensory input. Noah had an amazing family sponsor him and his time at Neuroworx.  Really the only way we have been able to take him there as often as we do. 

When we can raise enough money and get enough time off work we love bringing him to a clinic called Now I Can.  I say that Neuroworx gives him the muscles and Now I Can teaches his brain how to use those muscles.  It is a great system if/when we can afford to rotate the two. 

Other than this clinic we are still seeing our early intervention team monthly.  We see a PT, OT, and Vision therapist twice a month each at our home after work. Once Noah turns 3 we will be aged out of this program and he will then go into a special needs preschool.  I am getting nervous for this stage to be honest.

vibration plate

We still work with Noah daily but we no longer set aside specific amounts of time to use as "therapy" time anymore.  It got too hard on us after a full day of work.  We felt like all of our time spending with Noah as a family was doing therapy. We want him to see us as his parents not his therapists.  So now we incorporate his therapy techniques into daily life.  If we are watching tv we prop stand him or get him to sit using his arms and hands.  When we are in the bath we use tub toys for vision therapy getting him to look from one point to another.  When we are in the car we have him holding toys.  When we are getting him into his pjs or clothes we work on rolling or pushing himself up.  Our lives are so much happier doing it this way then forcing both him and us to set aside a certain amount of time daily just for therapy stuff. 

Wheel'n

WHEELCHAIR vs STROLLER:  I am not going to lie.  We do not use the wheelchair all that often, if ever.  To be honest it is heavy and big and a pain in the butt trying to maneuver curbs or steps.  Trying to run a bunch of errands on a weekend with a wheelchair is almost impossible for us right now.  Since Noah is still so small we still use our Baby Jogger City Select stroller with a toddler support pillow to keep him positioned appropriately.  I know that we have to make the big transition sooner rather than later...especially since we have twins coming.  We just haven't yet and that is okay. Sometimes you have to do what makes you feel comfortable.  The stroller fits our needs right now.  He still fits in it right now.  It holds all of his bags and pumps perfectly.  And it makes our lives easier right now.  So that is what we are using for the time being and I am totally okay with this.

REFLUX: I can proudly state (and shout it out loud without having to knock on wood) that Noah is no longer an everyday pukey kid.  Yes, he still has his moments if we feed him too fast or if he gets too hot.  However, he has gone from losing it all many times a day to going weeks between bucketfests.  Our laundry, carpet, and sanity can actually see the light of day again.

Rx:  Noah is currently still taking Zantac twice a day (noon and night) at 2.7ml.  

NOAHS EATING:

chewy tubes

Orally: Now that Noah can see us coming at him with a spoon or food he has been more accepting of taking things orally.  We are averaging about 1-2 ounces of food a day orally.  A major improvement for him is texture.  He is now eating about 2 crispy veggie stix a day and that takes a lot of oral motor control to chew and swallow without gagging or throwing up. Tongue lateralization is our current feeding therapy task we are working on.  Being able to bring food from the middle to the side of your mouth and then push it back to be able to swallow it.  Things you and I do without thinking but takes about 5 minutes for Noah to master with each nibble.  We are transitioning him off the binkie and in its place have really been pushing all kinds of chew toys and tools to still give him the oral stimulation he needs to keep his mouth wanting to work. 

Yum! Pie!

G-Tube: Noah is still fed 100% via feeding tube (g tube) into his stomach.  He is off all formulas and we have been successful with the blended diet now for many months.  It was a hard learning curve but with the help of a dietician, facebook groups, and family we can finally call ourselves blending pros.  After much trial and error we have a simple process that works for my husband and I and our full time work schedules. We blend every other day which make two days worth of meals him in 20-30 minutes. 

Each meal consists of (recipe changes every time but here is a basic one):
Serving size: 2 days worth
Serving: 8 oz meals 4x day
Calories:  ~1000-1300 daily
Free water: 1 oz flush after each feed and 2 oz bolus an hour before each feed and again before bed

•  6 Tbsp hemp hearts
•  4 Tbsp flax seed
•  2 Tbsp flax/olive/ or avocado oil
•  4 Tbsp organic Peanut Butter
• Handful of raw spinach
• 5-7 mini carrots
• one full cored apple
• 1-2 mini cucumber
• 1 full avocado (peeled and pitted)
• 2 skinned kiwis
• one full bag of steamable frozen vegetables (if we dont have any fresh stuff made)
• one pack of Carnation Instant breakfast (if I need more calories)
• various baby foods like sweet potatoes or prunes (if I need more calories)
• 2 ounces of carrot juice or GoodBelly juice
• 2 cups of rice milk
• one full flinstone multi vitamin
• one 400 IU Vitamin D 
• 2 tsp. powdered refrigerated probiotic

So...as you can see Noah has made some great strides over this past year.  We have learned so much as his parents and continue to do so daily.  He makes us smile every morning and we are still lucky enough to get good night snuggles every single night.  I am so proud of all that he has accomplished and is continuing to accomplish.  I am also proud of both myself and my husband for tackling this adventure together and figuring things out as they come.  Being a parent is scary no matter if they have special needs or not.  There is constant worry, constant guilt, constant questions, and always a dash of exhaustion.  Small things in comparison to all the wonderful moments that come out of even the hardest of days.  I will try to continue to post updates but like I said...Life happens and some times you just have to go live it! :)

Neuroworx

This is a video created by Neuroworx for a gala they held in September 2013.  I was fortunate to be able to volunteer for this wonderful event.  Furthermore, my son Noah who is a patient at Neuroworx, was also highlighted in this video.  He happens to be the adorable baby in the pool.

We started with Neuroworx a couple months ago.  For now Noah is only big enough to do pool therapy and some floor therapy.  We have already seen some great progress though.  A few weeks ago Noah started to put weight through his hips, knees, and ankles and actually try to stand.  His ataxic (shaky movements) have also seemed to calm down dramatically as well. 

We have been very fortunate to be a part of this wonderful clinic and have such amazing therapists working with our son.  The founders Jan Black-MS, PT and Dr. Dale Hull, MD are amazing and really make you feel right at home.  The stories and successes they share give mothers and fathers like us hope that our son will be able to sit on his own one day and down the road walk.

I cannot speak highly enough of this organization and all the help they provide for those struggling with any form of mobility paralysis or limitation. 

There are many other youtube videos about neuroworx as well as a facebook group and webpage.  You should really check them out if you are looking for a brain injury or paralysis physical therapy clinic.

Dr. Dale Hull himself was once paralyzed from the neck down from an accident and today is walking around the clinic cheering others on.  

Mystery Diagnosis

If you have ever found yourself wide awake into the wee hours of the night you might have come across a television show called Mystery Diagnosis.  One of those shows that seems to suck me in within 30 seconds of the intro playing.  Each and every time my eyes glue to the screen as I question if the child or adult with said diagnosis will be the answer to my sons "mystery diagnosis."  It never is but I keep hoping. 

About 4 or 5 months ago Noah started to exhibit a cyclical sickness or "attack" as his doctors like to describe it.  It would happen every 2-3 weeks and we can pretty much mark on our calendars now when to expect the next "attack."  At first all his docs chalked it up to constipation.  They all told me that because Noah was so backed up with stool that his body would spiral into some form of "fit" and his white blood cell count would elevate causing fevers, shakes, vomiting, and pain.  We aren't just talking about a simple 101.1 degree fever either.  104 or 105.2 is more the norm for him.  HOT POOP!!!!  (Should have named this post that!).  Well, no matter how much hot poop he had we always seemed to get him cleaned out with either a suppository, enema, or even an all night hospital GI clean out with this stuff called GoLightly.  None of which are great experiences but most do end up with some type of hysterical story to tell later (after we all shower and disinfected).  We have become pros at the poop patrol, making sure Noah has the perfect number of bowel movements a week all of which have to be the perfect consistency, color, and frequency.  We might pass the entry exam into a gastrointestinal school these days.  Noah was put on 1.5 cap fulls of Miralax a day (brings water into the intestine to get things running smooth) and a pretty intensive dose of medication called Erythromyacin which was actually an antibiotic until they found out that it makes the muscles in the intestines work harder and push the stuff down to its escape hatch better. 

It wasn't until he had another attack that happened to fall on the exact day Noah had his quarterly appointment with his developmental pediatrician where people really started to take us seriously.  I was sitting in her office with a screaming Noah who was burning up and miserable.  She brought in with her another doctor and as they were chatting away about doing another clean out Noah made damn well sure they knew he did NOT need it.  Within literally seconds we all hear a little grunt and even though he was fully clothed he was able to disperse his entire GI tract full of stuff all over the floor, my legs, the wall, the doctors shoes, and even sprayed up onto the table and stroller. 

I was mortified.  The smell was horrendous.  The looks on all our faces were priceless.  I wanted to laugh and cry and run away all at the same time. 

They still decided to do yet another stomach xray to see if they saw anything left in there.  They didn't!  They then proceeded to take me from one hospital wing to another as they did ultra sounds, blood work, and after a three hour long wait a call to inform me that they wanted to admit Noah for an all night observation to figure this all out. 

I was tired but what was I to do.  My husband was out of town.  My pants smelled like a sewage plant. My son was burning up again.  The stroller still had the aftermath of a futile attempt to clean it up using paper towels and hand soap.  I wanted an answer, a direction, something.  So I gave in and admitted Noah for an all nighter.  Thankfully my wonderful family and friends came to my rescue with clean clothes, food, and great company. 

Doctor after doctor came to our room.  All with different schedules and agendas.  All with different ideas and tests they wanted to run.  All with great enthusiasm and drive.  NONE of which actually came through with anything that they said they were going to do or test they were going to run.  No answers, no further tests, nothing.  All big talk until their shift was over and the buck got passed onto the next attending or resident doctor who had their own idea of what Noah needed.  I was one PISSED off mother the next day. 

Husband landed at the airport around midnight and came bright and early to re-leave me from my post for a couple hours until he had to go back to work again.  The whole day we kept waiting for someone to give us some for of plan.  Nobody had one.  I took matters into my own hands and went knocking on his developmental pediatricians door (not literally a door but her assistants desk worked just fine).  They actually paged her and I finally got someone to listen to me.  Nothing further was ever planned and every plan that was made was disregarded by the next doctor on shift.  Pointless and waste of time.  I demanded to be discharged asap....and we were.  Persistence is the key when it comes to staying in the hospital.  You want to be nice and friendly but you also want them to take you serious and not walk all over you or disregard you either. 

Fast forward five weeks to today.......

After many tests a CT scan was ordered to evaluate his stoma around his gtube site.  CT scan was clear of any findings.  His blood work was sent in and a immunoglobulin test was done.   We received a heart breaking call that day from his doctor informing us that his "preliminary" test results show that Noah "probably" has this totally rare and horrible disease that would cause him pain for the rest of his life and you and your husband are the carriers and would have a 25% chance of giving this to your future kids.  WE WERE DEVASTATED!!!!!! 

Three days later after finally getting a grip on things I get another call from his doctor letting us know they were "stumped."  It was NOT this horrible disease after all.  I was stunned and shaking and so thankful I could have probably passed out had I not been meeting a friend for lunch at the very moment my phone rang with the news. 

I learned a valuable lesson that day.  NEVER EVER EVER listen to what a doctor has to say if they use the words "preliminary or probably."  Just turn your hearing off and go on to have a nice day until you get the final results back.  It was a weekend from hell and one I wouldn't wish on anyone ever, no matter how much I might dislike them. 

Noah has undergone weekly blood draws, his attacks have come just as we planned every 2-3 weeks, his doctors have tried to reach out and get help from infectious disease doctors as well as rheumatology doctors.  More blood tests were ordered, more time we have to wait, still no answers.  Halloween morning is our first appointment to meet Reumatology.  From the sounds of it, it will just be a meet and greet with another list of future blood tests.

No one in the medical field and none of his 15 specialists he has on his team of doctors has been able to get to the bottom of this.  Only two have even cared to even try to figure it out with no luck.  The waiting is hard.  Seeing my sweet toddler in pain all the time is harder.  Not knowing what this is or how to even help him other than Tylenol or Motrin is the worst.

I wish the actual show Mystery Diagnosis was a real foundation that actually did try to figure out what was wrong with people and not just a show to show those who have already got it all figured out.

For now we just pray every 14th day after his last attack that he will somehow skip the next cycle or better yet that this was all a fluke and there isn't anything wrong with him and one day he just wont get sick for a very very long time.
 

Blended Diet Part 2: How we got started

We Choose REAL FOOD!!!

This post will go into detail about how we started our Blended Diet and the steps that followed.  A pretty technical post that may bore those who are not looking to start this form of diet themselves.  :)

All of our ingredients and measurements are calculated to Noah's specific size (33" long), weight (24-27 pounds), and age (20-22 months old) and dietary goals (he needed to gain a couple pounds to start and then maintain for a few months).  We found a dietitian that was willing to help us out and we have had regular blood draws to measure his levels (calcium, protein, vitamins, minerals, ect) so that we can adjust his recipes accordingly.  Each person is different as well as their dietary needs.  Noah currently does not have any form of hormone issues, allergies, or dietary restrictions so we have been able to pick from a variety of food options in creating his meals.  The one are we had to watch closely was the rate at which he was to gain weight.  He is severely low tone and very immobile getting little calorie burning exercise a day.  We had to consider this in every meal so he didn't get too big too fast and hinder his movements or abilities. Noah also had eaten many real food items in his past and we knew that his body could handle real food. 

Goal:  Have Noah gain 2-3 pounds with a well balanced meal plan and then maintain that weight without gaining or losing more than a few ounces for an additional few months.  Then we re-access at that time.

Guidelines:

• Total caloric intake of 900-1000 calories a day.
• 34 ounces of free liquid a day (24 hours)
• 15-20 grams of Fiber/day
• 12-15 grams of protein/day
• Keep recipe well balanced  

Recipe Elements: 

• Vegetables
• Fruits
• Protein
• Grain
• Fat/Oil
• Liquid (preferably calcium fortified)
• *Spices-optional
• *Vitamins-optional

Challenge: getting enough calories to fit into the volume we needed.  Noah can only tolerate 4-6 ounces of anything in his stomach at one time so we have to make sure to pack in everything into that volume while still following all of the above "guidelines" 

Blender: You must have a really high end blender (Vitamix, Blendtech, Ninja) once you get into blending food like whole grains, meats, raw vegetables, ect.  It has to blend well enough to make it thin enough to flow through the feeding tube without clogging.  If you are starting like we did with baby food then you can use pretty much any blender.  We used the baby bullet and it worked great as long as everything you are blending is already the consistency of baby food. 

Tricks & Tips: lessons learned :)

1. mix all liquid and soft foods first then slowly add in dry foods
2. blend multiple times to ensure smooth texture
3. use a strainer if you are not sure if there are any clumps
4. have a towel, washcloth, or paper napkin around as there are messes
5. scrape out blender you will be amazed at how much is still in there
6. have a large space on your counter for this process
7. save all baby food jars if you plan on freezing your own foods
8. If you save food in the fridge for the next day measure out your meals and then let sit overnight.  Then the next day add in the extra water/fluid you will need.  Grains absorb fluids and make the meals really thick over night
9. This is real food and can grow bacteria if not kept clean or cool.  Always put an ice pack when packing this food around with you.  Would you eat your breakfast food at 8pm if it has been sitting out on the counter all day?
10. warming food before you feed it to your child makes the meal smoother and thinner 
11. If you freeze your food/meals only fill the container partially as it will expand once frozen
12. Aim for a rainbow of colors for his foods (veggies & Fruits).  different colors means different minerals, vitamins, and nutrients. 
13. We opt for variety at all time but if your doctor is okay with a strict but balanced recipe then giving your child the same food each day is just fine.  But talk to your doctor or dietitian first.
14. Certain foods make blends really thick-Avocados, bananas, quinoa, starchy foods, ect- watch out for these
15. Certain foods make blends to thin (volume issue)- fruits (melons mainly)
16. Certain foods are more prone to cause clogging issues- berries, whole prunes, things with tough skins or seeds, hard grains, ect
17. Dairy milk froths when blended and can alter measurements

Equipment (other stuff you 'might' need):

1. Blender
2. measure cups and spoons for both dry and liquid goods
3. a fine mesh strainer
4. a spatula
5. a cloth for messes
6. 60 cc cath tip syringe(s)
7. all your food and vitamins and medicines
8. pump bag (if you go this route)
9. If you plan to make ahead of time and save or freeze have your jars, bags, pouches, or cups clean and ready to be filled.

Week One:  We replaced one formula meal with one full blended meal.

• we chose the easy route since Noah was still a toddler and went with baby food.  Not the cheapest option but since we both work full time this was the best option for us. 
• He was still getting most of his nutritional needs through his formula this week.
• 4 bolus feeds during the day (8am, 11am, 2pm, 5pm) over 1 hour and a 10 hour continuous feed during the night of water or water with formula to meet his free liquid and calorie goals. 
• We still ran his BD meal over the same 1 hour time frame to start.  
• 2-3 times a day about 30-60 minutes prior to each meal we would flush him with 1-2 ounces of water.  This helped meet his liquid goals as well as "clean out" whatever food was still in his stomach to make room for the next meal.  ***free water without anything in it does not digest therefore it absorbs in the body within 20-40 minutes and will not make you feel full or take up any room in the stomach for each meal. 

Recipe: (total of 150-250 calories needed for this meal)-high end if he vomited his earlier formula or not. We gave this one BD meal to him at 5pm each day to start. 

• 1 ounce protein (Gerber meat-chicken, turkey, ham, beef...with gravy)-50 calories
• 2 ounces vegetables (Gerber sweet potatoes, peas, or carrots)- approx. 40-50 calories
• 2 ounces fruit (Gerber pears, apples, mixed fruit)- approx. 40-50 calories
• 1/4 cup calcium fortified liquid (dairy, rice, soy, almond milk)- approx. 20-30 calories
• 1 tsp oil (flax seed oil w/omega 3, olive oil, coconut oil)- approx. 30-40 calories
• 1/4 cup grain (baby cereal-rice, multi grain, oatmeal)-60 calories
• Vitamin D-400 units
• 1/2 tsp Probiotics

Week 2&3: We continued to follow this same recipe for weeks two and three but started to experiment with different baby food options.  We also started to introduce 2 BD meals a day by week three at the 2pm and 5pm meals.

Week Four: We stayed with the same guidelines as the prior weeks but now we started to add in adult foods.  We were still doing 2 BD meals a day and 2 Formula meals a day along with the continuous night feed of water and/or formula depending on if he met his calories and liquid intake. 

Recipe: (total of 300-450 calories needed for these 2 meals) 

• 2 ounce protein (Gerber meats, tofu, ground turkey/beef, peanut butter, grilled chicken, roast)
• 4 ounces vegetables- 2 oz of 2 different options (Gerber foods, edamame, kale, spinach, frozen mixed blends, grilled squash)
• 4 ounces fruit- 2 oz of 2 different options (Gerber fruits, fresh fruits, prunes, applesauce, fruit cups, frozen fruit)
• 1/2-3/4 cup calcium fortified liquid (dairy, rice, soy, almond milk, broth or stocks)
• 2 tsp oil (flax seed oil w/omega 3, olive oil, coconut oil)
• 1/2 cup grain (baby cereal-rice, multi grain, oatmeal, brown rice, quinoa, flax seed, Mill seed, hemp hearts, multi grain cheerios, couscous, whole wheat pasta, whole wheat bread, ect)- stay around 120-160 calories
• Vitamin D-400 units
• 1/2 tsp Probiotics 

***I started to run into volume issues once I went to two meals a day and learned to adjust my food choices depending on how juicy they were or how thick they blended.   Trial and error. 

Week Six: FULL BLENDED DIET (900-1000 calories/day)-

**We stayed with the four bolus feeds during the day but adjusted the times to fit his needs.  He is more gaggy in the mornings so we do a 4-5 ounce feed at 8am and then increase it to his now 6-7 ounce total dose/meals throughout the day depending on how he is feeling.  If he eats 6+ ounces in one meal then we wait 3.5-4 hours for his next meal (starting from the time he started his last meal).  Whereas before he was starting each feed 3 hours after he started the last one. 

**We still are giving him 2 ounces of free water in-between each meal and are still running him over a 10 hour continuous feed at night but now it is only water.  We still are unable to meet his 34 ounces of fluid goal during the day alone at this point. 

Recipe: (total of 900-1000 calories needed for these 4 total meals) 

• 2 ounce protein (Gerber meats, tofu, ground turkey/beef, peanut butter, grilled chicken, roast)
• this does not increase because it meets his protein goals with only the 2-2.5 ounces.  
• 8 ounces vegetables- 2 oz of 2-4 different options (Gerber foods, edamame, kale, spinach, frozen mixed blends, grilled squash, ect)
• 8 ounces fruit- 2 oz of 2-4 different options (Gerber fruits, fresh fruits, prunes, applesauce, fruit cups, frozen fruit, fruit juices, ect)
• 1-1.5 cup calcium fortified liquid (dairy, rice, soy, hemp, almond milk, broth or stocks)
• 2 Tbs oil (flax seed oil w/omega 3, olive oil, coconut oil, other oils)
• 1 cup grain (baby cereal-rice, multi grain, oatmeal, brown rice, quinoa, flax seed, Mill seed, hemp hearts, multi grain cheerios, couscous, whole wheat pasta, whole wheat bread, ect)
• Vitamin D-400 units
• 1/2 tsp Probiotics
• Multi-vitamin-currently Noah is on 1/2 of a child's Flintstones type multi-vitamin

I have also started to make my own veggie and fruit blends.  Here are my two first blends that I came up with.  I keep these in my freezer and then pull what I need out the night before to thaw in the fridge until I mix it into my meal blend.  (I plan on dong many more of these)

Simple Veggie Blend:

1 entire Costco size bag of Frozen Normandy-Stye mixed Vegetables
1 entire grocery store brand bag of shelled steamed edamame
1 entire grocery store brand of frozen kale

• Cook everything according to directions
• Blend 3-4 cups mixed veggies, 3 Tbl edamame, 1/2-1 cup kale, and 1 cup water in batches.
• Pour into your freezer safe containers, label with date or keep note of the date you made these.

When I did this it made 34 (4 oz) containers.  I used cleaned baby jars to freeze these in.  Each container is roughly 45 calories, 2-4 grams of fiber, and 2-4 grams of protein.  I did not label these as I want to use them again in the future.  I put them in a box in our freezer and labeled the box instead.

Simple Fruit Blend:

1 extra large cantaloupe
1 regular sized can of Dole pineapple without the juice
1 regular sized can of pears with the juice
1 regular sized can of pears without the juice
3 regular sized apricots

• Cut the Cantaloupe and remove all seeds.  Dice up the fruit in chunks and throw away the rind.  
• open your three cans of fruit and drain the juice out of the pineapple and one pear can.
• Cut apricots in half and remove seed
• split into two batches of equal portions
• blend away :)
• Pour through a strainer before jarring.  The pineapple will leave a ton of fibers that may cause clogs in your pump tube.

This makes a ton of liquid and frothy volume.  I let it set out for a few minutes to let the bubbles settle.  I then poured into 23 (4 ounce) baby food jars.  I calculate each jar is roughly 60 calories. 

We are still in the learning process as you can tell but I think we are making ground on this whole blended diet thing.  We are currently making two days worth of food at a time and keeping them in the fridge ( I plan to expand this to a full week at a time).  I have personally found that using reusable baby food pouches is our best option.  We have recently purchased the Yummi Pouch which can hold 6-7 ounces of food at a time, opens from the top which I love, fits a 60CC cath tip syringe in the screw off port, cleans really easy, and the bottom expands as you put the food in it and it doesn't tip over while filling. There are many brands of reusable food pouches on the market right now.  I make 8 (6-7) pouches every other day right now which makes it really easy to bring to daycare and on errands.  I use a wine bottle freezer sleeve/pack to slip the the food pouch in while running errands to keep it cool inside his pump backpack. To fill these pouches I have found the easiest method is to either use a large 60cc or 100cc cath tip syringe or to use a measuring cup that has a long narrow spout.  

There are many many blogs, networking groups, websites, and books that offer a variety of other tips, tricks, and recipes.  I am not by any means an expert in this area but I still wanted to share with you our journey and how we got started.  I find myself researching new recipes daily and it is almost a game for me to find one that has the perfect amount of volume/calorie/guideline balance.  I notice a major difference in Noah since starting him back onto real food again. 

I have also met a wonderful tubie friend who is in the process of starting her own line of Complete Tube Fed Meals.  I can't wait until she is in full production :) Check out her website and her adorable Chief Inspirational Officer: JustFood

Blended Diet: Bye Bye Formula

compare to a tiny apple

Noah's eating has been a yo-yo of a journey as you all know.  He started out on breast milk, then was drastically switched to formula.  He was introduced baby food around 4.5 months old and took to it really well and then over some time all oral eating started to decline.  Yada yada yada....(insert many months later)...(add in surgeries)...(with a dash of oral aversions and GI complications).....and now he has the infamous G-tube (feeding tube directly in his stomach).  It's a small "button" that has a cap that is attached to him at all times (the balloon part is inside his stomach).  Yes, we change it out if the button gets old and no it doesn't hurt him at all.  It has a plug that keeps it closed when you do not have a tube/extension attached to it.  As you can see the tube is really narrow and the button is very small so it's not like we can just push a steak through it.  You are extremely limited as to the texture and consistency of food that can be pushed through the tube, past the button, and into his stomach.  Liquid of course being the easiest.  Doctors are very quick to put children on feeding tubes and yet there is very very very few ways to get them off the feeding tube.  ***hint:  Looking for a profession?  Become an experienced Medical professional that ONLY deals with getting children OFF feeding tubes.  You will make millions!!!  No lie.

When Noah was put on his feeding tube at 1 1/2 years old it was because he stopped eating orally and never really could drink orally anyway. This was a means to keep our boy hydrated and nourished.  We were given a choice of either pediasure (dairy based) or Bright Beginnings (soy based pediasure type drink).  Basically a high calorie formula.  How many "typical" 1 1/2 year olds do you know that is still surviving solely on formula or breast milk without any other type of food or drink given.  Not too many I am sure.   Why should Noah?  A question that haunted me since we left the hospital.

Have you ever read the ingredients on a can of pediasure?  Um...water, sugar, more sugar, stuff I can't pronounce, and even more stuff I have never heard of.  And this is what the medical field was telling me over and over and over was the best choice for my son.  I just didn't get it?  He was eating many types of baby foods and ground up dinners that my husband would make for the family.  He never once had an allergic reaction to any type of food including all those that they tell you to be careful of.  He loved spices and avocados and beets of all things.  Then BAM....insert gtube....and then take away all real food?!?  Can you see why I was so put off by forcing my toddler to now only consume formula.  It just wasn't right and I could tell that Noah's body also didn't agree with his new forced diet plan.  He got constipated every single day, he threw up more days than not, his reflux was horrible and his GERD/Sandifer's Spasms intensified.  He was always full of gas.  He was always crying during therapy or tummy time.  He didn't like to be hugged tight.  He was always sickly looking from always feeling like he needed to vomit of from constant bouts of vomiting.  He would wake up every single night.  Not always crying but usually tossing back and forth from discomfort.

We had to rework our lives and everyone who ever watched him to fit in his new feeding schedule that was so strict that with the slightest alteration you would be sorry to not have a puke bucket handy.  Here was his "formula" schedule that we lived by.

8am, 11am, 2pm, 5pm: 4 oz of formula dripped in by pump over 1+ hours while he was sitting angled upright to prevent puking or reflux.  Then he would have to continue to stay in that upright position for more than 30 minutes while we prayed he didn't puke.  Then if we were daring enough and had a towel handy we could then try to lay him down for a nap or to play on the ground and again say a prayer he wouldn't lose all that went in him and choke.  He never just lost a little bit.  If he gagged or refluxed hard enough he would have three rounds of projectile vomiting.  I am sure every inch of everything we own has been a victim by now.  Then we had to "try" to give him free water in between meals to increase his fluid intake and again hope he didn't lose it.  Then we also had to slip in two different types of medications to reduce the acid in his reflux so his throat wouldn't get damaged from all the vomiting.  We would have to line his crib rails, under his bouncer chairs, and under his high chair with towels.  We even had to keep a towel draped over the backseat of our car when he was sitting in his car seat.  If we won the feeding lottery he was able to keep that 4 ounces in him and he/we would have 1-1.5 hours to get in as much as we could with play or therapy or errands before we had to start the cycle all over again...every single day.  Those were good healthy days.  Toss in a running or stuffed nose, a cough, an upset stomach, constipation, teething, fevers, crying fits, too tight of highchair belt, or just too hot of weather and the whole process got much much harder and the rate of keeping in any of that formula would literally be an act of God. We just kind of expected him to throw up and it became a new norm for us and we had the whole Operation: Puke Patrol down and could do it with our eyes shut and one hand tied behind our backs.

None of this should be normal.  None of it should sound right.  None of it should ever happen.  Our lives should not be turned into fear of feeding our child and then sorrow for not being able to keep anything in him.  We told any medical professional that would listen.  All of his many many doctors.  Nobody would ever consider that it was the formula. All they did was make us change the type of formula.  "Try a non- dairy based one, try a soy based one, try a special anti protein one, ect."  We tried to listen to them but we knew...I knew! It's the formula that isn't working not my son's body. I am not against formula in general but for Noah specifically it just wasn't working for him and I needed to figure out what would.

a great book to get you started

I took a very controversial and highly debated route and switched Noah over to what in the tube world is referred to as "The Blended Diet"  BD for short.  Basically, real food, blended very thin, and fed through the tube instead of the formula.  Not rocket science but try finding one medical professional that promotes such a diet is like finding a needle in a haystack. Yes, many are intrigued with the idea of the BD and some will even give you the go ahead to try it.  However, nobody is really there to help you get started and you pretty much have to research it all on your own.  Most insurances will not cover a dietitian for the BD either.  Thankfully there are networking sites full of BD families and even a couple books now published that help with some of the in's and out's of starting and living with a BD. 

Not sure why doctors and therapists are so hesitant to learn and promote the BD.  A variety of reasons have been brought to light but no real definitive answers.  Some are too scared of causing their patients to have an allergic reaction.  Some are nervous that the families will not take on the full responsibility of the BD and harm their child's bodies.  Some are afraid parents will just throw in PB&J's or Mac and Cheese for every single meal and call it good.  Whatever the reason is I have not had a single doctor get excited about me even mentioning the idea of starting Noah on the BD.  So, I didn't tell most of them and really would only talk to his Dietitian up at Shriner's (because my insurance would not cover a dietitian) and she and I would work out the logistics  to the BD...because their are many.  She has been a lifesaver for me and has been the only person I could turn to for help coming up with recipes to fit Noah's specific needs.  Since meeting with her I have been given a few other food ideas by a couple of his doctors that I have admitted doing the BD with.  Not full recipes but ideas of different foods.  That has been helpful. 

So active these days

I will go into all these logistics in a separate post for those who might be interested. For those of you who are just looking for Noah updates I am proud to say that we are currently two months into the process of a blended diet.  We had to start slow and transition him (doctors orders) but now I wish, for our own situation, that we would have jumped in head first.  It has only been in the past five days where Noah has been on a full blended diet with little to no formula. 

This week alone Noah has made strides.  I mean that when I say it.  He is sleeping through the night completely.  He has found his voice and is really letting everyone know how much he likes to hear it.  He is so much stronger I can't even describe it.  He is consuming four times as much food per feeding than he was in half the time= more free time to play :)  He is so much happier, doesn't have really any gas, is going potty unaided daily, has energy like I have never seen before, and the MOST rewarding thing of all.  We are now FIVE full days vomit free.  We have been able to cut out one of his reflux medications and we can actually lay him down on the ground mere minutes after feeding him.

Yes, the process of a BD is tedious to start out but it has literally changed our lives for the better.  It has been one of the best decisions I have ever made for my son.  It's almost been a little miracle for my family.


****Update (one week after drafting this post) Noah has run into some major constipation issues. The motility of his GI tract isn't functioning properly.  I am pretty sure it has something to do with one of the foods I was putting in his BD.  Recipes have been adjusted, we have cleaned him out, we have started using Miralax daily again, and I now know what signs to look for to prevent future GI issues.  This should be a warning to all of you who chose to start the BD.  Make sure to keep them going regular.  If you find that their motility is slowing down then you need to take action immediately to prevent a total shut down..  Also, makes sure to add a fair amount of fiber to their BD.

I still stand by my last statement that the BD  has been a lifesaver and the best decision we have made for Noah.  Even with this past weeks hiccups.  Learning as we go :)

To Those Who Chose

This is my unofficial disclaimer to those moms and dads who share 50% of the same DNA as their Special Needs child(ren).  This post is different. This post has a very specific audience that I would like to express my gratitude towards at this time because I feel that they need to know as much as we do....

Since being handed my official "welcome to the special needs world" entry card I have been privileged to witness many acts of kindness, read many blogs, seen thousands of networking and forum posts, and made several wonderful friends.  There are so many emotions that swirl around and change from day to day for anyone dealing with any form of hardship in life.  The highs are high and the lows are low.  The one thing that stays constant is that for those who gave birth to their special needs child they do what they need to do, every day, to learn, understand, face, and grow each day with the news they were handed about their child.  Yet, we are not alone.  There are these additional angels out there. These are the angels that chose to be a major part, if not the most important part, in the life of a SN child and took on this role proudly....so I thank you!

Through marriage, adoption, foster care, a friend or family member, no matter the title....you chose to pick up your special needs entry card and slip it safely into your pocket and take on whatever highs and lows came your way.  You chose to be there for every sickness and smile.  You chose to endure every fight and phone call.  You chose to love unconditionally and stand hand in hand with this child that did not come directly from your body...so I thank you!

Caring for any child is hard.  Caring for one who comes with 10+ doctors, over 50+ appointments each year, a medical history 5" thick that you have to memorize, a constant flow of onlookers, and a conclusion that the local hospital is your second residence is very very very hard.  It takes a special kind of person to take all of that on especially when you had a choice not to...so I thank you!  

I want to say THANK YOU over and over again.  You may be a grandparent.  You may be a step, adoptive, or foster parent.  You may be a sibling or extended family member.  You may be a nurse or  you may be a friend of the family.  To the child you love you are their world, their lifeline and the one who holds a special place in their special heart...and they thank you! 

Double Ear Infections=a Milestone????

Sick little Bobaloo

It started about 9 days ago when I noticed Noah was sleeping more.  He normally stays awake until 7-8pm but was falling soundly asleep around 5pm and I couldn't keep him awake.  I noticed a new tooth was coming in and chalked it up to this.  Then last Sunday we were meeting some friends for an outdoor concert that was in the mountains.  I naively thought that since it was in the mountains it would be cooler instead of the blistering heat that stood in the valley.  I was beyond wrong.

We were surprised that Noah actually slept in which was odd but woke up relatively happy.  We loaded the van with his arsenal of stuff but decided to leave his many cool packs/towels/fans at home since we were after all heading into the mountains.

Two seconds into his carseat he threw up everywhere and we couldn't get him to stop.  We were fighting whether we should continue to go or not but after he was cleaned off he seemed fine, so we cleaned the van and headed out.

We loaded his stroller full of his many bags and met up with our friends to enjoy a nice afternoon of music and fun.  We lasted all about five minutes...if that.

Noah started to fuss and cry.  The weather was much hotter than I had expected so Jer and I took turns carrying him indoors where the air-conditioning made for a much  more enjoyable experience.  However, when it was my turn Noah just screamed bloody murder and I didn't know what was wrong.  He was burning up and his face was as red as a lobster.  I sat on some couches in the basement of this lodge trying to pretend to all those walking by me that I had things under control when I honestly didn't. 

Needless to say we loaded back up in the van and headed home a mere 40 minutes after we arrived.  The entire 50 minute ride home was full of retching and gagging and screaming and whimpering.  I felt so bad for our little man. 

The second our garage door shut I had Noah out of the carseat and stripped down to a diaper.  105.7 was what the thermometer was reading and the puking that followed brought me to the conclusion that Noah had the flu. 

For four days straight Jeremy and I fought a losing battle against this fever.  We were running off literally a couple hours of sleep each night and rotating motrin and tylenol every few hours just to keep his temp below 105.  Noah's bedroom floor became a campsite made out of towels, buckets, and cool rags.

We struggled with bringing him to his pediatrician because in the past 20 months of Noah's life we have received the exact same treatment plan for every fever or chill.  Keep him hydrated, give him tylenol or motrin, do cool baths and cool wrags, ect. 

Working full time means that I have less opportunities to get Noah to an unscheduled appointment. However, after the third day of this temperature reappearing every few hours despite the fact that we now had a way to keep him well hydrated (gtube), I knew it was just time to take him in. 

I woke up that morning and to my surprise Noah's temp was only at 99.9.....much lower than the past few days.  Did his fever just break?  Do I take him in now?  He actually felt so much cooler than normal and he didn't puke once in the past 30 hours....maybe he is on the mend and it was only a simple flu bug. 

So, I went to work and Noah went to his aunts house for the day.  Everything was going okay until I get a call that Noah was in this total scream-fest out of the blue.  I dropped everything I was doing at work and rushed him to the doctor.  Jeremy met me there because we knew something was just not right. 

As murphy's law would have it we pulled up into the parking lot of the doctors office to have Noah smiling, and kicking happily, and cutely babbling, and acting like he just pulled one over on his parents.  It was ridiculous!  All these days of struggling on what to do, if what we were doing was right, if we were bad for not immediately bringing him back into yet another doctor, leaving work last second.....uh.  Then when we finally do take him in Noah is all happy and chipper and a total angel.  Even the receptionist commented on how cute he was and how well he was doing for be "SO sick" as I had stated to her over the phone. 

Since it was a last minute appointment the doc was running a bit late.  I finally told Jeremy to leave and go back to work since Noah obviously was okay now.  After some convincing he did and I waited another 15 minutes until our doc came in. 

Noah was all super cute and adorable and continued to make a big liar out of me.  UNTIL....Dr. Z took a long look in his ears and pulled out what could only be described as a cherry sized mound of earwax (not literally but it was still massive).  After digging his way into his ear canal he noticed that Noah had a major ear infection in one ear and a minor ear infection in the other. 

Of course like any mother might feel I left the office with mixed emotions. On one end I felt horrible for not getting him into the doc beforehand.  On the other I felt happy that Noah had something that could actually be treated. 

This is a milestone for Noah.  In all 20 months since his birth and throughout every single hospital stay we have had he has never once been prescribed antibiotics for a simple "typical" child condition.  Not saying that we are celebrating this because double ear infections are not fun for anyone involved. However, it was an ear infection that lead to a high fever which in turn made him nauseous and caused vomiting.  It wasn't some crazy hormone imbalance or undiagnosed virus or infection or backed up GI tract. 

Noah got sick....just like any other child could with something any other child gets.  We left the office with a real solid treatment plan of 6ml of Amoxicillan 2x daily for 14 days.  This is the first time ever that we left a doctors office with a definite plan of action and one that had a start and stop date and an outcome to look forward to.  WHAT A RELIEF!!!!