Thursday, February 28, 2013

Oral Adventure: Part 2 (food/bottle/cup suggestions)

You know when you write something and you feel like you have covered all the bases but then a couple days later you realize you missed some pretty substantial points...well that is what happened so I am here to follow up on my original Oral Adventure with a few other tidbits.

Periactin (Cyproheptadine): This is a type of prescription medication that was first put on the market to help with allergies.  However, over time they realized that this same drug increased the users appetite significantly.  You really have to google it and find forums about people using it solely to increase appetite but it is prescribed for just this reason.  Noah was prescribed this drug and put on an original 2.5 ml/ 2x daily schedule.  However, we soon realized after the first day that this was too much for his little body.  We dropped it down to 1 ml/ 2x daily which worked for over a month.  Your body does tend to get used to this medication so over time it will built up a tolerance and the usefulness will start to decrease.  Since we dropped him down to such a small dose we have been able to increase it a tiny bit at a time over the course of a few months to keep his appetite stimulated and keep our little guy hungry.  It really has worked wonders for us.  Some people say it works so well because it makes you so thirsty.  We would not know if that was the case for Noah seeing as he wont drink for us no matter what.  However, he consumes so much more and is hungry more often than he ever was off of it.  We have played around with this medication and will take him off of it completely for a few days and then start the small dose over building it up over time.  Our doctor has given us permission to do this.  Without this medication I am pretty positive Noah will have never been able to gain the weight he has.  I have also read that food tastes so much better while on this medication which allowed Noah to experience new tastes and we have found that he is in love with avocados which is wonderful since they are packed with calories. We buy a bag every time we visit Coscto and then we blend them with all kinds of other foods and then freeze 2 ounce servings in glass jars (used baby food jars).  He can eat a jar every day and that alone is over 100 calories for just 2 ounces depending on what we mixed in it.  (see what I mean about forgetting to talk about some important tidbits...this one is major and yet it still slipped my mind).

Exercise Band Tubing: Not just for those arm or leg stretched anymore.  You can actually use the tubing part to help with chewing and teething exercises.  We picked up one of these bands at a local discount store for $5.  Buy the extra strong bands instead of the easy stretchy kind.  Go home, cut off the handles, but the tubing into pieces around 6-8" long, wash them in the top rack of your dishwasher or in really hot water.  Then with adult supervision put one end of the tubing into your child's cheek and watch as they start to chew on it.  You might have to get the chewing motion started by pressing up on their jaw first.  This band is durable and flexible enough to provide a stimulating and enjoyable tool for your young one.  If your child has fully grown teeth they might be able to bit really hard and puncture the tubing but this tubing is durable enough to only leave a hole and not tear off at all.  For extra strong support you can tie knots down the tubing before you cut it into pieces and the knots will also add as a chewing tool.  ****you must always supervise your child while using this technique and please be extremely aware of them not choking or sticking it down their throats.  You will also want to evaluate the tubing as you go along to watch out for any hole puncture or pieces that look like they need to be cut off.  I hold the tubing for my son the whole time.  You might notice that their saliva will get into the tubing and collect there.  Be sure the wash the tubing after every use and store in a zip lock bag for sanitation reasons.  You can even put the tubing in the freezer for 10 minutes to add additional sensations.  I do not recommend leaving it in the freezer for too long however to prevent the rubber from breaking down by freezing. 

Mesh Teethers:  NOT like the ones I picture below.

These are wonderful tools on the market.  However, for my little hypotonic guy they are just made too big and the mesh bags are just too wide for him to really get into his mouth.  Now, if your child can use these toys then I highly recommend them.  Noah however could not because of the reasons I just stated.  I found that buying some soft mesh material, putting smaller softer foods in them to start off with, and then twisting the material until it formed a small little pouch, Noah was more apt to actually accept it in his mouth.  It was much smaller, didn't have this massive plastic handle to intimidate him, and still provided the same type of teether but more suited to his aversions and weak mouth.  I liked to start off with diced canned pears or peaches.  They kind that are cut into tiny squares and were soaked long enough in the juices to soften them just right and provide some intense fluid flow in his mouth.  You can also try chunky applesauce or mushed avocado or carrots.  The mesh will trap any pieces so they do not choke and over time they learn to trust the mesh material and will accept it more and more.  The thing that I liked the most was that he learned to take on the juice and fluids from the different types of foods without having to actually swallow the chunks.  After he mastered a certain type of food using the mesh I would do it again but add the smallest of pieces of the food directly into the same side of his cheek so that now he would feel the substance and have to swallow it.  Avocado worked best for Noah since it was smooth and soft and not full of too much juice like the fruit.  You can then eventually work up to  testing just the fruit piece by piece into their mouth without the mesh cloth.  ****I would cut tons of these clothes and then throw them away after one use.  Just make sure the cloth you use is strong enough to not fall apart in their mouth from using their teeth. 

Pasta & Grains: Now that Noah has surpassed most of his oral aversion to textures specifically we have started to introduce him to different tiny pastas or grains.  Below are some of the types we have used.  We start out with literally putting one tiny piece into his mouth (which usually goes unnoticed) and then we up it to 2, 3, 4, ect.  Depending on what the pasta or grain are coated with usually depicts how likable it is for him.  Most tomato based sauces he likes but there are a few that are too acidic for him especially when he is about to cut a new tooth and then he wont swallow it.  The Quinoa is probably the one that we have had the least success with because this grain falls apart in the mouth which is very textured and Noah is not a fan yet.  Orzo made with butter, heavy cream, parmigiana cheese, and a little salt and/or pepper is probably his favorite.  The coating is smooth and creamy enough to help with the swallowing action so it doesn't stick to the roof of his mouth or down his throat.  Spaghetti O's we have just recently tried.  I found that the can contains different sized O's and he can easily chew and swallow the smallest and next to smallest O's but the bigger ones will break open to form a long string shape instead of an O and then he spits those out.  The sauce that Spaghetti O's comes in isn't too acidic for Noah and he is able to swallow most of it.  When he got tired I threw the rest into the blender to bend it for him and I did have to add a little Rice Cereal to thicken it up for his to eat the rest.  I bought the can with the meatballs and I couldn't believe the amount of calories I was able to get into him and he liked it. 

Chicken & Stars/boxed chicken noodle

ORZO/SpachettiO's/Acini de Peppe/Quinoa

Bottles and Sippy Cups: Like I mentioned in Part One of this posting we have tried, I think, every single type of bottle or sippy cup there is out there.  Those for $1 picked up at thrift stores to those that cost $20 each.  We have tried different nipple flows for bottles, have taking the stoppers out of sippy cups, and I even went as far are super gluing a couple different nipples together in hopes it would work for Noah.  None of them have so far.  However, just because it didn't work for Noah doesn't mean it wont work for your little one.  Here are my thoughts on each of these bottles/cups. Because Noah has severe hypotonia any form of bottle or sippy where you have to bite down really hard and or suck to get fluid out is a no go for him.  We have wasted too much $$$ on these types so we have had to try to figure out other ways to get fluid into him. 

Honey Bear Cup: Literally an empty honey bear with a straw.  You can buy these online for around $10 or make your own for around $2 each.  Buy some empty honey bears with the lid that can open and close not the kind with the funnel top.  Then go to your local hardware store, in the plumbing isle, and find 1/4" aquarium/fridge tubing.  Cut a piece long enough to touch the bottom of the honey bear and leaves about 2" coming out of the top hole.  Voila...your own honey bear cup.  The ONLY thing to be aware of is that the size of the hole int he lid and the width of the tubing has to be tight enough to make a good seal or else you will not get the desired pressure suction in order to use this effectively.  We had to literally use pliers the first time we tried to thread the tubing through the lid.  The idea of this bottle is to fill it the liquid in the desired consistency as is allowed for your child.  Then insert the tube/straw into the top front of their tongue like you would using a straw yourself.  Then squeeze the honey bear slightly to allow the pressure to push the fluid up the straw and onto their tongue.  It takes some getting used to for everyone involved but if your child cannot suck this is a good thing to try.  If they cannot keep the fluid in their mouths try thickening it a bit so that the substance sits on their tongue.  Allow them time to figure it out and swallow it before squeezing more into their mouth. 
Cup Out Cup: These cups come in different colors and each color is a different size and flexable strength.  You can easily see what fluid is going into their mouth and you are able to squeeze the cup to form their mouth better than a typical cup.  You want to make sure that you are not pushing this cup so far onto their lips to where the edge of the cup is touching the corners of their mouth.  If this is happening you are pushing too much cup into their mouth.  You want the cup to touch the front part of their mouth and hopefully they will be pushing their lips onto the cup.  It can get messy trying this for the first time so a big or towel is recommended.
MAM Training Bottle Nipple (6+ months): My son is stuck on MAM products.  The only pacifier he will take is a MAM and the only bottle he can drink from (asleep) is a MAM.  I think the reason for this is because he has a higher than average palate and the MAM nipples are build wider, rounder, and larger than other brands.  The MAM Training Cup is one than has worked in the past for Noah because of the design of the rubber nipple.  We take out the fluid stopped under the nipple and thicken the fluid so he wont choke but it can still drip out of the 3-4 holes on the top of this nipple.  The soft pliable texture is each for him to gum on and yet he still doesn't have to necessarily suck to get the fluid out.  It is large like I mentioned so they do have to open thier mouths wider than with other nipples and training cups.  We still work with this one weekly and it has been the most successful for us so far.
Pigeon Cleft Palate/Lip Bottle Nipple: This bottle nipple was suggested to us by our Speech therapist.  This nipple works under the assumption that your child cannot suck or seal their lips/mouth.  At first we thought our prayers had been answered because that is exactly Noahs problem.  You have to kind of gum or chew on this nipple to work or at least apply pressure from some area of the mouth to get the fluid flowing.  There is a small white ring that you have to insert in the nipple if you want it to work. Otherwise it acts just like a typical bottle nipple.  You do not have to buy the pigeon bottle for this to work.  The best bottle to use are the really cheap Walmart brand bottles that are like $1.  You need a very small ring for the nipple to fit.  Dr. Brown bottles work as well but the seal isn't the best.  We will continue to try this nipple but Noah keeps thrusting his tongue out of his mouth with it and that does not allow for the proper pressure to get the fluid to come out. 

MAM Bottle Nipple
Other Bottle Nipples we have tried:  Tommee Tippee nipples have a much wider base which is good for those who need that extra "face plant" on the base of the bottle nipple.  It simulates the natural breast more than other brands and the nipple itself is rounded and bulbous.  The MAM nipple is the one that we have had the most success with (while Noah is sleeping).  This nipple has a flatter shape than most but is still really wide with a flat spot on the nipple base for deeper lip attachment.  The Playtex nipple never worked for us at all and we think it is because the actual nipple portion is really short so Noah could never latch onto it properly.  The medela nipples we used until Noah had to go on the feeding tube.  He was able to latch onto these really easy and was the only kind of bottle and nipple we used during his first 4 months because I was nursing him at this time.  Once he could take a bottle again he lost his ability to latch onto the small shape of this bottle nipple. 

Tommy Tippie/ Playtex/Medela

Nipple Flow: All brand of bottles will offer different nipple flows.  They can be called stages or flows or sizes or range by age of infant.  We found that the fastest flowing nipple works best for Noah but the liquid has to be thickened to a nectar thickness at least.  The slower the flow of the nipple means the harder the child has to suck on it in order to get anything out.  All this hard sucking will cause your child to tire out faster than they would have using a faster flow with a thicker liquid.  There are also "Y" or "X" cut nipples sold mostly online but available in some stores.  These flows are for really thick fluids of extremely blended puree foods. 

Noah is currently on a MAM bottle with an "X" flow nipple: 6 ounces water, four scoops formula, 2-2.5 scoops of Thick IT using the measuring spoon that comes with the ThickIT.  We wait 1 minute for the thickener to set up and if he is alseep he can down the mixture in under 10 minutes.  If we wait longer than 30 minutes the ThickIT will get thicker and the flow slows down so we have to add another .5-1 ounce of extra water to the bottle.  Zantham gum based thickeners  (Simply Thick) do to get thicker as they sit out like the Thick It does.  This bottle amounts to about 190-200 calories and around 7-7.5 ounces of fluid intake (taking into consideration the water dispersion from the powders)

VitalBaby Stage 3
Hard Spout Sippy Cups: Most if not all of these types of sippy cups no matter what brand they are have a very hard plastic spout with tiny holes in them and a hard removable stopper located under the lid.  These sippy cups need to have the sucking action in order to use them, if you are using the stopper.  If you removed the stopper then you will get small drips coming out of the small holes.  This is the good part.  Also, many brands come with handles.  The bad part of these is that because of the hard plastic spout most children with eating difficulties can't latch onto the spout or seal their lips around the spout.  They also chose not to try biting on the spout either because it is undesirable.  So, for tipping the cup to drip in a few drops these sippy are good but unless your little one can suck or tip the cup back on their own they are more of a nuisance in my opinion. 
Product Image
OXO Tot 7-oz/ Fist Years Sippy Cup/Tooth Tips Sippy Cup/ Gerber Sippy Cups

Soft Spout Sippy Cups: These seemed like the most ideal sippy to try for Noah.  However, will ALL of the soft spouted sippy cups you have to be able to have a strong enough bite or suck to get anything of these kids of sippy cups.  I went this route because it seemed softer and more pliable to work with and many of the spouts are elongated more than the hard spouts so I felt like since Noah has a high palate the longer spout would fit deeper in his mouth and sit on his tongue more and maybe entice him to want to suck on it.  Didn't work for him but it could for you.

Munchkin Sippy Cup/ TommyTippie/ NUK/ Dr. Browns

Trainer Cups: As you can see none of this cups have a stopper and are pretty much free flowing cups.  If the cup is clear you have a better idea when the fluid might be pouring out but the solid cups it is like a big surprise shooting out of the hole and drowning Noah.  He is completely not ready for this step but I wanted to share the ones we have tried.  They will be handy when he does reach this step.

OXO Tot Trainer/Baby Bjorn/First Years/Avent

Cups I plan on Trying next but cant really rate just yet:I have recently come across these two sippy cups that both have a soft spout but a different spout design than the ones we have tried.  I like that the spout is elongated and shaped to promote lip closure.  These will be my next two attempts. 
Born Free/ ThinkBaby/ Nuby Sports Sipper

Munchkin East Feed Spoon
Feeder Spoons (google:Squeeze Spoon): We currently have the Munchkin shown below but there are many brands of this same idea.  They can range anywhere from $6-$20 that I have found.  They all pretty much do the same thing.  That is you squuze the base the the food/thick liquid flows out of a hole and onto the spoon.  I like this brand because it locks open or closed for ease of transportation.  If the liquid you are using is thin it will pretty much just flow out as fast is if pouring from a normal cup.  We have used this a few times with thickened formula on the days when Noah has refused to take any liquid.  We also call this "cheat feeding" because if Noah is laying back on a deep recline we can pretty much get the entire container in him with no work on Noah's part.  Not good in working on his eating technique but when he is sick or teething and refuses anything this is what he have to do in order to skip a trip for an IV.  Below is a picture of the feeder spoon I plan on trying next. It is the Nuby Soft Flex Infafeeder. 

As always, if you have any suggestions or ideas that you would like us to try please send me a comment or you can email me and let me know.  If you provide an idea for me that will work and get Noah to drink liquids while awake I will send you a big fat thank you along with $100 bill.  Yes, we are that desperate at this point.  :)  :) 

Tuesday, February 26, 2013

Noah's Therapy Video at Now I Can

Noah completed his first session at an Intensive Therapy Clinic called Now I Can Foundation.  This clinic is located in Orem, Utah.  We completed a 3 week Monday-Friday, 4 hour a day session and in that short amount of time Noah was able to gain almost complete head control as well as figured out that he has arms and hands (though...he is still not using them much yet but it gets better every week). 

 Noah's Therapy Video at Now I Can

We are so proud of our sweet Noah. 

Monday, February 25, 2013

Oral Adventure:Feeding and other Oral Aversions

Our Salty Sweet Battle against Oral Aversion, Calorie Intake, Tube weaning, and Proper Digestion 

I have mentioned this many times but our top two battles right now with Noah are his low body tone and his inability to drink any form of liquid while he is awake.  This post is going to go into detail describing the feeding methods we have tried/succeeded/failed/cried over/laughed about/and recorded.  I am not sure where to even begin but here I go...

Noah was feeding tube fed from approx. month 4-6.5 of his infancy.  It was an Ng tube (the kind that goes down your nostril to your stomach).  Now, 2.5 months seems like a skip in the park compared to all those who have had to endure much worse in regarding to tube feeding themselves or their children.  However, with Noah being so young when being put on the tube he gained all kinds of oral aversions and completely lost his ability to suck and swallow.  The muscles in his mouth went practically unused during this time except for a pacifier or the 1ml of liquid we were approved to drip into his mouth a few times a day.  I have been told by some doctors that Noah was never really able to suck and that his current struggles were always there.  Yet, I have also been told the complete opposite from other doctors.  From our observations I feel that Noah would be able to take a bottle if he had never been forced off it in the first place.  I will not go into detail about our feeding tube experience since I have already written posts (vented) about it  Here and Here but I will now proceed to talk about what we have done since this time and how Noah has been able to get where he is today regarding his eating and calorie consumption.

Noah has had four swallow studies with his final one showing that he is no longer aspirating as of last week.  He has had a throat xray (different than a swallow study) that showed he needs his adenoids taken out next April.  He has also had an upper GI barium study done that showed in addition to his severe reflux he also has a hiatal hernia and really fast stomach emptying into his intestines which makes his body not absorb as much as it should and is working against him in weight gain. 

We are currently working with a Speech Therapist through our insurance as well as an Occupational Therapist that focuses on feeding techniques through Early Intervention.  Both have completely different techniques but we have learned to combine the two and incorporate our own techniques to work with Noah.  So far I think we have made some major progress. 

Our 10 Techniques to help Noah's Oral Aversions & Calorie Consumption

Right after Noah was put on the tube and no longer nursing or taking a bottle he started to no longer want anything near his mouth or in his mouth at all except his pacifier.  We used many items to get him to once again accept things in and near his mouth.

1. Summer Infant Dr. Mom Gentle Vibrations Toothbrush

This toothbrush comes with two different attachments and only costs around $10-$20 depending on where you purchase it.  I bought mine off  At first we kept the vibration off and would wrap his fingers around the toothbrush for a few days.  Then we did the same while the vibration was turned on.  Once he got familiar with it in his hands we moved to his shoulder for a few minutes of play and then his chin and cheeks.  Once he was ok taking the stimulation on his face we inched closer and closer to his mouth.  Today this happens to be one of his favorite toys and brushing his teeth has become a game he really enjoys.  I also happen to feel that this is the number one cause of him losing his oral aversions...among other things.

2. Baby Wash Clothes.

Product Details
You know, those really cheap thin pieces of fabric they call wash clothes but in reality they are more like dryer vent blockers.  Wrapping your little finger in one of these and wetting it with a variety of different tastes like milk or juice or food helped Noah get used to flavors while still getting the same texture each time with the cloth.  I started by twisting the fabric to form a small piece that could easily be inserted into the side of his mouth for him to gum on it.  Of course you have to hold this the whole time so they do not choke.  Now that he is teething we even freeze applesauce and have him chew on the frozen fabric to sooth his sore gums.

3. Different Shaped Teethers :
We liked teether and gummers more so than just the typical teething toy or ring because these came with bristles or textures and were small enough to move around to different parts of the mouth and across the tongue to help reduce the gag reflex.  Here are a few of our favorites.
Nuby Gum EEZ
Baby Buddy's 1st Toothbrush
Zo-li Gummy Stick Baby Gum MassagersProduct Details
Zo Li Gummy Stick                                                                            RaZberry Teether

4. Kissie Lips
Exactly what you think it is....kissing his lips...and often.  Everyone loves to kiss babies but actually kissing his lips or making lip smacking sounds near or on his lips with my own lips helped him get past the aversion of sound and touch near his mouth.  I also would personally eat chips or loud sounding foods in my own mouth but near his so that he would get used to the different sounds that could come from a mouth.  He hated it at first but after a week of chomping near him and this aversion was gone.  

5. Momma-Birding (this one I get embarrassed about but you do what you have to do, right!) :)

It all started one day when Noah was about 10 months old.  He is not a strong chewer and in fact even those baby puffs were too much for him to handle.  He just refused to make the chewing motion with his mouth.  My husband made me breakfast that included bacon.  I was holding Noah on my lap and decided to just touch the bacon to his lips to see if he would like the flavor (which I do with everything all the time starting at 4 months of age).  I don't put the food in his mouth but just touch it to his lips to see if I can get his tongue to dart out and touch/taste the food.  I started to eat the bacon myself and noticed that bacon really gets the saliva glands going big time and bacon actually mushes up pretty well too.  So, I literally dipped my fingers into the mush ball in my own cheek, I pulled out the smallest of wades and I stuck it directly into Noahs cheek.....and he ate it!  I was in shock.  Not only at the disgust of the situation and the fact that I actually just did that but Noah chewed!  So for the next hour I proceeded to chew bacon for my son and feed it to him in small pieces.  He loved it and it was packed with calories. At 12 months old we tried pulled bbq pork that we blended every so slightly so it still had a ton of texture.  He loves it, chews it, and this is the one thing we think started to build the muscles enough in his mouth to start chewing other foods. 

6. Dissolveables:
You first want to start out with those baby puffs you can find in the baby isle that dissolve within seconds of them touching your tongue.  They can be the fruit ones or the ones that resemble adult cereal but make sure that you start off with the kind made for babies as these will dissolve faster.  I also would break them into even smaller pieces to start off with especially if your child has a really sensitive gag response.  After they can devour these little gems you can start to play with the other steps of baby biscuits or cookies.  Then you can advance to adult foods like cheeto puffs, veggie stix, wafer cookies, or soaked pieces of adult cereal like cheerios.  It is a slow process but it has worked for Noah.

7. Sweet vs. Savory:
Noah is not a fan of sweet things including fruits.  He never has been.  The only thing that I know he will not gag on right off the bat is that is where we started.  We start off feeding him savory foods and then after a few bites we will add a tiny dab of fruit to the same spoon and then gradually cut back on the savory item on the spoon while increasing the sweet item.  We also have found that by adding bold flavors to his foods he will consume much more.  Salt, spices, condiments like soy sauce or ketchup or pickle juice.  A different bold flavor of something savory will get his mouth watering again and he will consume so much more in one sitting.  We start off with plain baby food or blended food and when he gets tired of it we add a pinch of Mrs. Dash or a dribble of salad dressing to the food and he starts to enjoy it and will eat more.

8. Calorie  Packing Options:
Stuffing calories into a little guy is one of the hardest things I have ever been challenged with in my life.  He can't drink while awake and as he gets older he is taking less naps so sleep feeding is getting harder and harder.  Yet, he still needs calories and still needs fluid.  Well, every type of food has liquid in it so we have had to adapt to adding more fluid in with his foods but still making them thick enough that he will be able to eat the food easily.  He is still on formula but we add an additional scoop to each bottle.  He also still has to take thickener in his bottles so that also adds calories.  When he is having a really bad eating day we will add baby food banana to his bottles or we opt for children's pedasure drink.  You an also do a high calorie milk (or soy, hemp, almond milk) and add carnation instant breakfast packet to it for packed calories.  There is also a powder called DuoCal that you can purchase to add calories to pretty much anything but we have found other options that are not so expensive.  Baby foods have at most 120 calories and that is in a stage 3 food that most children gag on because of the inconsistent texture blends in stage 3 foods.  We chose to take table food, blend it using baby food as the mixing agent, and then adding some type of really high calories item to the dish that will help with flavor in addition to calories.  These items include avacado, olive (other) oils, coconut milk from the can, whip cream/heavy cream, cottage cheese, yogurt, coconut oil, bacon grease, meat products that blend well, banana, sweet potatos, ect. Pretty much the highest calorie items that most people do not keep in their homes because they are trying to watch their own figures.  Table food hands down will have a substantially higher calorie and fat ration than any form of baby food will.  We use a baby bullet machine and it will blend any table food into the perfect smooth texture you need.  If you are in a time pinch you can quickly make a frozen meal and blend it.  Usually high in sodium but we have found the healthy choice frozen meals will contain a lot of vegetables, blends down to the smallest of portions, and will provide a really high calorie meal for your child.  If you really want to get into the blended diet there are so many websites and forum groups that go into detail on the different kinds of items you can add to your foods for organic and healthier option down to cost saving alternatives.  We are all over the board and have tried pretty much everything out there to see what Noah likes best and what will provide him with healthy high calorie options.

9. Bottles and Alternatives:
Our #1 struggle area and the one area we are still seeking help and advice on since we cannot seem to get Noah to suck on any form of bottle.  Nor can he hold liquids in his mouth at all unless they are the consistency of pudding and that pretty much defeats the whole point.  We have literally purchased almost every single bottle, nipple flow, sippy cup, honey bear cup, training cup, cut out cup, bottle top alternative there is on the market and to no avail he still is unable to take any form of liquid while he is awake.  The second he slips into dreamland he can suck a 6-8 bottle dry in 10 minutes flat with no problem.  Obviously this shows us that he has the ability just doesn't have the skill to do it without his natural instincts and reflexes taking over for him.  This poses a major problem for us as he gets older and he is starting to take shorter or fewer naps.  We are barely getting 21 ounces into him daily of calorie packed formula but we do know he is getting additional fluid in the food he eats during the day.  We have tried different flavors and consistencies of liquid, we have tried different kinds and textures of thickening agents, We have even gone as far as recently trying bottles/nipples specifically made for children with cleft lips/palates.  Yet we still cannot get him to take liquid awake.  The second I find what works for him I will post it but for now you can see all the areas we have tried and maybe one of these ideas/options would work better for your child. 

10. Its an All Day All Consuming Process:
We could easily put Noah back on a feeding tube and in fact his special needs pediatrician tells us that he is just barely meeting the threshold before we will be forced to put him back on one.  However, we personally know what it was like to tube feed him and have heard so many friends fight an even bigger battle trying to wean their children off the tube or the complications that have come from surgically inserting a feeding tube directly into their stomachs or intestines.  We have opted for our son and our family to work endlessly every single day to help Noah win this battle on his own.  Yes, it tests our patience and we cry many days from pure exhaustion.  Yes, it is hard...but so far it has been worth it.  I might not notice it today but all I have to do is look back on where he was a year ago...or even a month ago and there is progress there.  Small but still progress.  It keeps growing and so does our knowledge and know how.  We try new things daily, we research things weekly, and we never give up...ever because we know he can do it and we know that we can do it no matter how exhausted we are.  If we get to the point where Noah's doctor tells us it is time to get a feeding tube we will not put our sons health on the line and we will get one.  Until then we will continue to fight the battle and hopefully one day we will win.

***Bonus technique (Dum Dum Suckers):  Recently our OT had us take a small dum dum sucker and get Noah to dart his tongue out of his mouth to touch the sucker.  Once he gained a desire for this sucker we then would put the sucker in his cheek and pull his cheek outward to get him to try and move his tongue from side to side inside his mouth (this is called tongue lateralization).  You can play all around his mouth inside and out with this sucker and it will help his tongue to get stronger and also explore the other areas of his mouth.  This techniques not only helps with tongue movement but will also eventually help with speech.  It also made Noah hungry because it got his saliva glands working.  (make sure to have a towel or bib under his chin cause they will drool a ton during this exercise)

Noah is currently 15.5 months old.  He weighs 22 pounds 10 ounces.  He is 32 inches long.  Every time we see a doctor he grows longer putting his BMI lower and lower.  Currently his BMI is at a score of 89 and his doctor tells us that a typical child needs to be between 90-100.  One point off but that is huge in the world of special needs children.  If we can maintain this 89 we can keep him off the tube but if he drops by our next visit we have to rethink the feeding tube situation.  If you look at a picture of Noah all you see are cute baby rolls and a round plump face.  Most do not understand that he is underweight because you can't see it.  He looks so cute and chunky because he is so low tone that his muscles are are weak and that makes him look the way he does.

Winning any battle with oral aversion or eating is no easy feat and one that should be celebrated even for the smallest of wins.  He ate a cheerio and didn't gag...Win!  He took one suck from a bottle and didn't cough it back out...Win!  He ate four whole veggie stix...Major Win!  He ate a 300 calorie meal...You just won yourself an Oscar!  Learn to celebrate these wins and that is what will keep you going.  Every day there will be one win no matter how insignificant it might seem. He didn't throw up..he didn't gag....he made the chew motion...or it could be as simple as he let you touch his bottom lip without pulling away.  The steps have to start some place and the only way you can move forward is by continuing to take these steps. 

Good luck on your own personal Oral adventure and know that if you need help there are many Facebook or other web based groups out there that can help you.  If you need professional advice please contact your pediatrician and they will be able to guide you in the right direction.

Friday, February 8, 2013

Turtle Steps: Noah's Progress @ 15 months

Milestones...Inchstones...Baby Steps...Turtle Steps.....

The second I find myself disappointing because Noah has not been able to figure something out, or learned how to do something on his own, I take one look at my phone's photo album and I am back to reality.  It is amazing how far one little baby can come in just 15 months. 

So many times I have to pull myself back and remind myself that Noah is on his own pace in this world.  One that I am not used to and will probably take me my whole life to truly get comfortable with.   Patience isn't a big enough word to describe what Noah teaches us daily.  I have had to step out of my own box to squish into Noah's little one.  Sometimes it gets stuffy in there and sometimes I just want to bust out and go for a run to reset things. 

Noah's progress is slow...turtle step slow...but it's forward moving and that makes me one happy momma.  I am so proud of all the steps he has learned and taken on as part of his every day life. Many times once he gets something it takes a few weeks of repetition and then as long as it was repeated enough within those weeks he has it for good.  Then...that hurtle or milestone or inchstone or whatever you want to call it is never really thought of again.  It's like removing a winter coat from your body.  It wasn't really too heavy to carry but once it is removed you feel like you can breathe a bit better.

Here are some wonderful things Noah is doing these days that have shocked us, made us cry tears of joy, have helped us go about our days a bit easier, and are no longer ever thought about because he has taking his turtle steps in new directions....moving forward.

Noah is currently 15 months old.  He is 31 inches long and only 22 pounds.

Not showing are his brand new amazing chewing abilities.  I don't take pictures of these because frankly they are kind of just gross with smashed food all over myself and Noah :)  He is now chewing veggie sticks, pulled BBQ pork, orzo pasta, sticky rice, small curd cottage cheese, and his new found favorite peanut butter!

He has full head control now and sit propped with a hugga bebe pillow

He loves to move backwards in a walker but we have stopped using this much because it provokes back arching.  It has however taught him how to reach for items.

He is slowly learning how to hold onto things.  Big steps in his fine motor skills. 

He is so much more alert these days visually and will watch his favorite cartoons for a few minutes

He can suck and chew on his fingers, he can bring both hands in midline, he is now clenching his fists and looking back and forth between the two of them.  He can hold on really tight to items like toothbrushes and pens.

He has total control of his binkie and can move it from side to side in his mouth without dropping it.  He has also acclimated to the cold weather and find it funny when a brisk breeze blows on him.  He is also now a fan of sledding. 

He is getting a stronger core and learning how to support himself with his hands without throwing himself backward. 

He can sit independently for a few minutes with only a little support now instead of total support as in a baby chair. 

He is starting to push off and up on things and keeping his head upward a majority of the time which shows he is getting stronger muscles in his shoulders and neck and chest

he is pulling his hands in front of him more often than throwing them behind him which is a step in the right direction

He sleeps really well and when he does wake up nightly he never cries and will fall back to sleep on his own after a few minutes.  Though...he still isn't a fan of his puppy licking him all the time :)

He smiles all the time these days, he laughs out loud, he babbles and does the A-Goo and BBBB sounds now.  Finally...a closed lip sound...progress!  

He loves books and pictures of babies and I think he will forever be fond of beaded necklaces. 

His daddy can still make him laugh no matter how sick or sad he is.  This shows he is bonding and correlating with certain people.  Cognition progression.  

Still on baby formula but he LOVES savory foods.  Not a huge fan of sweets yet. 

Working on rolling over and so far he is half way there.

So determined to use his arms and hands.  We are inching our way there and I am sure the next time I do an update post I will have a picture of him without arm braces :)

In addition to the pictures Noah is no longer feeding tube dependent and has not had any seizure activity in more months than I can even remember.  We won the battle with his infantile spasms and he overcame his aversion to touch as well as oral stimulation.  He no longer bawls every single time our dog barks or when we might sneeze a bit too loud and....he is already on his fourth haircut!

Noah is amazing.  He is our little champ. He  deserves some kind of Blue Ribbon or Gold Medal for all of his accomplishments in such a short amount of time if you think about it.  But for now some blueberries and vanilla yogurt will have to suffice. :)