Noah was featured in an article

The MAGIC foundation asked me to write an article about Noah for their summer newsletter.  You have to subscribe to be able to read the entire newsletter (all proceeds benefit the foundation and their wonderful cause).  However, here is Noah's specific portion for all of my friends and family to enjoy  :)

***(warning: no matter how many times I proof read the article before I sent it in, I did find a few grammar errors in the final article.  Hate when that happens!)

hoS(PIT)heLl

Dear whomever runs all things medical in this universe,

Enough is enough!  Yep...I said it....we are done!  I would like to go into details about all the hospital chairs we have sat in and all the aquatic cartoon animal wall murals we have stared at with either exhausted, teary, or blank eyes but honestly...I lost count.  I guess I could flip through the three inch stack of medical history forms from these past two months but just the fact that I actually have this stack makes me want to "Lash Out Irrationally"~Tim Allen's The Santa Claus

Noah just can't catch a break (as I knock on wood praying he actually doesn't break something now).  Seriously though, it started with his inability to stay hydrated/nourished which sent us on a few trips to the ER for fluids.  Then he got a cold/flu bug.  Then he broke three molars at once which again caused total refusal to eat/drink and back to the ER we were sent directly from his peds office. Then his adenoid/frenulumectomy surgery and then another ER visit for fluids and then an Ng-tube placement and then a G-tube surgery and now of all things a bowel obstruction, yeast infection around his stoma site, and some type of other infection they couldn't find in all FIVE trips down to radiology and ultrasound departments. 

After every visit the nurses always hand us his plastic name tag that sits inside a blue plastic wrist strap.  "Would you like to keep this for his scrapbook?"  they always ask.  "Um, no thank you" is always our reply as we hastily toss it directly into the trash container.  When he was born we kept this little tag as a cute reminder of our quick trip in the hospital to welcome him into this world.  Now the only thing these name tags remind us of are pain and suffering our son is enduring and how its kind of like he has a credit card directly attached to his ankle.  Each time they administer any form of medication or procedure they have to scan the bar code on his tag to "charge" his file to make sure we pay for every little cotton ball and syringe full of Tylenol.  It honestly does get a bit annoying.

I figured out this time though when Noah kept kicking his tag off that they could actually keep this hard sharp edged ankle torture device off my son and instead put a sticker on his thigh and cover it with a piece of bandage tape (Tegaderm).  SOOOO much better let me tell ya.  We of course still have to keep the plastic one close by so they didn't miss each and every opportunity of scanning its bar code but at least Noah was a bit more comfortable keeping it off of him.

The first overnighter I had packed two bags full of extra clothes, toys, comfort items (for both Noah and myself), light snacks, and 'survival pieces' I have learned to never go without when sleeping in a hospital.  When I got home after that first visit I removed all the perishables but never actually had a chance to unpack all the items because we were soon heading back to the hospital for yet another all night stay.  For TWO months now I have not been able to unpack these bags.  I started to wonder if maybe that was the reason we keep getting sent back.  As if a cruel joke was being played on us and we were setting ourselves up for the inevitable.  This last Saturday evening and literally the second my husband and I stepped foot back into our home after our latest hospital stay I blurted out in one sentence "illgowashNoahand gethimreadyforbedyouworkongettingeverylastitemoutofthosebagsbeforeyoudoanythingelse."  Lets hope this does the trick and we will not be seeing anymore hospital walls for the rest of the year...or even better....our lives :) A girl can dream :)

We have learned a great deal about hospital stays that I would like to share for those who ever find themselves having to stay multiple days in the hospital.

1. Buddy up to each and every single nurse/staff member and be EXTRA nice.  You can call it brown nosing but I like to think of it as insurance that you and your child will get treated as somewhat VIP's.
2. FOR YOU: Pack a hoodie, eye mask, ONE earplug, your own pillow (an extra one you dont care about washing all the time), slip on shoes, socks, comfortable pants, an extra comfortable shirt, electrical device chargers, toothbrush, face wipes, chapstick, lotion, and light snacks.  For you woman...don't forget to throw in some spare "monthly" items as well cause more than once the stress of it all has put me in an unlucky situation.  It would be wise to pack some pain meds and stomach meds for you as well if you suffer from a weak stomach or tend to get headaches from constant beeping sounds, overhead lighting, or lack of sleep (cause you won't be getting much). 
3.FOR YOUR CHILD: favorite toys and blankets that can be washed, favorite movie or music, favorite binkie or chew toy (many of them) two comfortable outfits that can be easily put on and off. Pack some food just in case and if they are tube fed pack all the emergency kit stuff as well as the special type of formula they are on (cause chances are the hospital will not carry it).  Dont waste your time packing diapers or wipes unless your child is sensitive to other wipes then make sure to pack like two whole packages of them with you cause you will go through these for everything.  You will not be allowed to use your own medication so save time and do not pack these.  However, it is wise to type up a list of medications they are on and have that with you at all times including doses and intervals.  Include all the vitamins and otc medications as well. 
4.Hospital food is not good on the stomach no matter how "good" others might say a particular hospital cafeteria might be.  The stress, lack of sleep, and greese/carb overload that is in every single item will eventually catch up to you.  If someone calls and asks if they can bring you anything always say "Yes, if you don't mind I would love some food."  Choose healthy options even if you dont normally eat all that healthy.  I promise it will make the stay much more comfortable.  Also, drink tons of water (which the staff will always be able to get you). 
5. Just because you are staying in a hospital does not mean that you can turn your "parenting skills" off.  Nurses are assigned to your child but it will be up to you to make sure your child is comfortable, not stuck alone, entertained, clean and dry, and safe.  Depending on the cause for the stay the nursing staff will normally come in every few hours to check vitals or administer medication but otherwise it will be up to you to track them down for everything else.
6. If you need something always ask and do not be afraid to ask.  Warm heated blankets for yourself or child, extra pillows, water, some places even provide juice, soda, slushies, ice cream, babyfood, crackers, cookies, and granola bars.  Always ask.
7. White Noise is my saving grace.  Of all the hospitals I have stayed at with Noah each and every one of them has a tv set up in the room.  There is normally a "white noise" channel that has a black screen but a constant rhythmic tone flowing through it.  At first it might sound a bit annoying but for an all night stay this sound will drown out other patients, night staff chatter, hallway vacuums,  pump machine hums, and outside noise (if you are lucky enough to get a room with a window).  I don't think I could ever sleep if it weren't for this white noise channel.
8. You can turn off lights at any time.  If a light is bothering you or your child turn it off.  Don't be afraid to.  If the staff needs a light they will turn it on when they have to.  This also means the computer screen that is in the room. If the light on the computer is bothering you just push the button to turn it off.  I promise the staff will not mind (or at least they never have once i finally go the guts to shut everything off).
9.  If you are in a room with a window but no curtain ask for one or ask for them to pin up a blanket to block out the street light.  If your room has a track around the door but no privacy curtain hung up then ask them to call maintenance to put one up.  The track is there for a reason and you should be able to get one with no problem.
10. Shift Changes:  This is the hardest part of staying in a hospital in my opinion.  Most staff works 12 hours shifts that I have come across.  Nurses usually work from 7 to 7 and the tech staff usually works from 6-6 (just examples).  If you get administered at the beginning of the shift you can feel like they become your friends by the end of it...and then they vanish!  Just like that.  On the rare occasion you will get a goodbye but most of the time you will just get a new "hello" from the new shift and feel like you have to start the whole process over. It really does feel this way.  Start a new "relationship."  Make sure they know your child's specific needs and routine. ALWAYS ask a ton of question with each staff change so that you both are on the same page.  You can have an amazing nurse and then get switched to a new nurse that got in a fight with their spouse the night before and comes in all groggy and edgy.  Nurses are people too and just like you or I they have their good and bad days too.  If you are planning on getting discharged and it is coming to the end of the shift then plan on staying for at least another few hours because you will more than likely be parked until the new staff gets up to date on your plan of action and they finish their initial rounds.  I have found that when you are woken up at 6-7am with the new shift change a doctor usually comes by and I always ask them if/when we will be discharged and then with each and every staff member that comes in after that I remind them of this time to keep them on track so that we dont end up getting discharged at midnight again (this has happened). 

***bonus:  If your child had any lab draws the nursing staff should be able to pull these up if you have not been able to speak to a doctor in over 24 hours.  If you need to speak to a doctor then just ask...but be prepared cause you will receive a bill in the mail for every single doctor who steps food through your door (even if only to introduce themselves because they are covering another doctor while they went to lunch). Yep...we got a bill once for a $200 "hello".  Nothing you can do about it either.

Needless to say we are thoroughly finished and exhausted with hospital stays and visits.  If you are a praying person then please pray that our Noah will have a better rest of the year and that the only bag he will be packing is one to go on a much needed vacation :)

Ankle torture device...heading in for adenoid surgery.  Had we known it would lead us to another month of hell we would have cancelled it for sure.

After his G tube got surgically placed...obviously he was not a fan and wanted to express his discomfort. 

Sometimes you have those moments when cuddly friends make everything better. 

Adenoidectomy+Frenectomy = (G-tube minus Ng-Tube)

Adorable as ever noogie and all

 On 4/30/13 Noah went into his first surgery.  Surprisingly this was his first actual surgery even though he has been in hospitals and doctor offices every single month since he was born.   Before this surgery Noah had been sedated twice in the past for his two prior MRIs.  This time however he was actually given anesthesia.  I was unsure how he would react to this and the surgery.  I had anxiety for weeks leading up this surgery and exactly one week later I am still full of anxiety and fear. 
 

A few months ago I had gone ahead and scheduled an appointment on my own with an ENT (Ear Nose Throat doc) for Noah.  Nobody including his special needs pediatrician had ever mentioned Noah be seen by such a doctor.  I however knew he needed to.  Since birth he snored and snorted and always sounded like he had shallow breathing even though every oxygen monitor he had ever been hooked up to (12+) had always shown really good levels (thankfully).  As I have mentioned endlessly Noah to date still in unable to drink liquids while he is awake and I have always felt like there was/is an underlying reason to think about in addition to his oral aversions and sensory issues.  He always accepted liquid in his mouth using many forms of cups ect however he just could never actually swallow it without acting like he was drowning or in pain.  

One day I caught a bit of a cold myself and my nose was completely stuffed and I was trying to drink my morning coffee when I realized that it was incredibly hard to swallow and breathe at the same time.  It dawned on me that this might be what Noah is also feeling. 

The ENT gave Noah an exam and didn’t see much but Noah started to snort and so he sent us for a throat x-ray.  The x-ray showed that Noah’s larynx and his adenoids were vibrating off each other because of his low tone in his neck and throat.  All this vibration caused his adenoids to swell very large and were blocking his airway.  His tonsils looked normal and of good size so the ENT decided it best to remove Noah’s adenoids only at this time to open up his airways and hopefully in time he would be able to drink feeling safe someday.  

Then, during his most recent session at Now I Can, one of the amazing therapists was watching me give Noah a bottle while he was asleep.  She was very intrigued and noticed that all of the muscles that would be needed to get one to swallow were working normally.  Then the next day I tried to give him a bottle while he was awake and she noticed that he was unable to wrap his upper lip around the bottle nipple. 

In all the exams from every single doctor and therapist Noah has seen not a single one of them noticed that Noah had a very prominent upper lip tie.  I remember once when he was first getting his upper two teeth I noticed how large and tight this frenulum seemed and showed it to his general pediatrician who said it was normal.  When I was 11 years old and going through the braces stage I too had to have my upper frenulum clipped so that my upper teeth would be able to move together and reduce the pencil width gap I then sported. I put in a call to the ENT and asked if it would be possible to clip this upper lip tie at the same time he was already under anesthesia for his adenoidectomy.  He agreed and an extra ten minutes was added onto his surgery time.  

Ninja jammies!!!

The morning of his surgery we were to arrive at 6am for check in.  This was a very early start as I had to wake up around 4:30 to be able to get us both ready and to the hospital in time.  I was the first to arrive and check in but within literally 15 minutes the entire room was full of families and small children still in their jammies not knowing they were all going to be knocked out and have something removed in a couple hours.  I felt bad for every child that hour.  

After Noah got weighed and dressed in this adorable little hospital jammies, which made him look like a karate kid, we were then escorted to the surgery waiting room.  I was alone at this point as my husband had to work and I had told my parents to come up once he was taken back for surgery.  Thankfully, my sister-n-laws (Noah’s care taker during the day) neighbor works at this hospital and had come in especially for Noah.  This made me feel so special and helped tremendously with my anxiety and fear.  She walked me though all that was going to happen and took him back for the surgery herself.  While waiting in the surgery waiting room with my parents she not only called me once but twice within the 35 minutes surgery to give me updates.  I felt like a VIP and was very thankful for her guidance and help.  The surgery really did only take 35 minutes and that was from knock out time to post op.  I was then called back to see my poor baby in this dazed and screaming post op state from the surgery and anesthesia.  I felt so bad and then I saw the blood stains on the sheets and felt even worse for my little man.  I could tell his was in so much pain and so confused.  

Our “hospital angel” then led us to the 23 hour overnight observation area where we had to stay because they wanted to keep an extra special eye on Noah since he has neurological issues.  This was a total blessing in disguise because there is no way I could have handled Noah at home that first night without an entire team of nurses and aides there to help us.  His lip looked like he had just received a collagen injection from the frenulum removal and his entire face was just puffy.

Noah did NOT have a very good recovery.  He was so uncomfortable and out of it that he just screamed and screamed and screamed.  I felt bad for the other kids recovering and having to wake up to blood curdling screams.  Thankfully our Angel as well as my parents were there to help me “try” to calm him down.  They kept him hooked to an IV in his foot and were able to give him some stronger pain meds that finally helped calm him down and fall asleep.  

The funny part of this entire adventure/horror story is that Noah has always hated being on his stomach.  Tummy time in our house started in infancy as torture time and then later on turned into “I’m just going to lay here in protest and not do anything other than sleep or cry or chew my thumb.”  However, literally the second out of surgery he was flipping wildly from back to stomach and since then this seems to be his preferred position.  All this tummy time has really encouraged him to put weight on his arms and the one good thing that has happened through all of this is that Noah is now able to sit in his floor bouncer without the huggabebe pillow and can actually balance himself. 

The first night was rough…really rough.  Up every 20 minutes and almost a total refusal to eat or drink which is to be expected.  It literally took me 23 hours to get in enough food and fluid to allow us to leave the hospital and go home instead of staying another night.  In retrospect, I kind of wish we did spend one additional night there.  As soon as I got Noah home, and after two bags of IV fluids and three doses of loratab, Noah was happy and cooing and hungry.  He ate an almost 300 calorie meal which never ever happens. Then out of pure exhaustion both he and I took a long nap on my bed where I slept too long and didn’t wake up before he did to feed him his “sleep bottle”.  As soon as he woke up everything started to go downhill.  He was thirsty but awake and couldn’t drink anything.  He was hungry but overly hungry and wouldn’t eat anything.  He started to cry and scream and so his throat started to get sore and raspy.  He kept banging his face into the floor or mattress and kept hitting his upper lip which would cause more pain.  Every time we tried to sit him up or lay him on his back he would cry harder like we were poking him with needles or something.  This lasted for two entire days and nights and both my husband and I were just spent.  

I had taken the day of the surgery as well as the following day off work to be with Noah and my husband took the next day off work to be with him.  We took turns trying to allow each other to rest when we could but still….we were plain exhausted.  On Friday, the next day, we took Noah to his care givers house but that was not a very good day either.  His food intake was going up but his liquid intake was dwindling further and further.  

Feeding Noah while he sleeps is impossible unless he is sound asleep on his back so that we can position and feed him correctly so that he does not aspirate.  Since he refuses to sleep on his back since surgery we have had to try and turn him over covertly and pray he doesn’t wake up.  Prayers were not answered and he has woke up more times than not which means no bottle…less fluid…and approaching a dehydrated state again.  

heading out with battle wounds and arm braces

Fast forward a few days: Totally dehydration now:  Made a call into his doctor who rushed us to the Rapid Treatment Unit at Primary Children’s Hospital for what we like to call “The Noogie” insertion.  When Noah was just 3 months old he got his first nose feeding tube aka Ng-tube aka Noogie.  We hated it so badly that we spend every moment weaning him off the stupid thing.  We have spent literally 13 months trying to keep the stupid noogie away.  Like a bad nightmare it was now back in our lives to taunt and torture our whole family.  We had to endure another overnight stay and I got to watch Noah puke and puke and puke because the first day of having a noogie is like gagging on a funny straw that has been shoved down your throat.  It was another night of no sleep and watching Noah try to adapt to another oral issue.  Keeping in mind he was only one week post op from his last surgery.  Poor dude.  

We have now had the Noogie in our home for exactly 8 days.  We have found it to be a love hate relationship.  We hate knowing that Noah hates it.  We hate that it has made him not eat a single thing by mouth since it was put in.  We hate that it gets caught on everything.  We hate having to keep Noahs arm in a brace to prevent him for yanking it out (which he tries constantly).  We have the process of it all and the care and management of the adhesives and syringes.  However, this is probably the first week since we weaned off his last noogie where Noah has been well hydrated and we have seen an increase in energy in him that we just love.  We no longer have to struggle to feed him bottles when he is asleep and can actually let him, as well as us, sleep uninterrupted.  We have been able to get all medication in him which is nice.  Plus, eat time we do try to feed him orally it is more for practice and not an anxiety stricken task to force calories into our son.  Like I said love/hate.  

AMT mini-One

Monday morning we have yet another 1-2 day stay scheduled in the hospital when Noah will be getting a permanent G-tube placed into his stomach.  We have chosen to go with an AMT mini-one button with a 14 french size tube.  We will be using both continuous feeds through a pump as well as bolus feeds through a syringe using gravity to flow the formula into him.  Currently we are using Bright Beginnings soy drink that is 240 calories a can since he has a milk intolerance.  However, this is all on our wish list and things might change mid surgery as they commonly do.  G-tube feeding will be new to us and we do have our hesitations, fears, but also positive outlooks as well.  It is the best option for Noah at this time and though we have fought this since he was an infant I regret not doing it sooner.  I have joined all the tube feeding networking sites and educated myself to the nth degree about g-tubes and maintenance.  

Monday starts yet another chapter to Noah’s story and another hospital stay and medical history line to his already too long list.  Praying that for the rest of this summer (and year) we will be able to stay out of the hospital, away from IV fluids, and miles from the ER.  I feel prepared and ready and I have a really good feeling about this surgery and what will come out of it.  I am not going in with irrational expectations like I did with his first Ng tube.  I will take it a day at a time and work hard to get Noah to eat orally as well as start to drink orally while awake.  Already with the noogie I feel a weight lifted off my shoulders knowing he is fed, hydrated, and is getting his meds.  The g tube which I might have to now call his “goobie” will allow Noah to have his throat and cheek back and once healed will be a discrete reminder to us that Noah is healthy.

Here is a link to an instruction Handbook about G-tube options and care that was given to us at our G-tube assessment appointment.

First Stranger Comment: follow up to my last post

Who knew it would happen so fast, but it did, and I finally found out what I am made of (sugar or spice).  Sugar won :)


Day:               Mother's Day 2013
Time:             11:00am
Location:       Overly crowded and disgusting buffet full of coughing and hacking people with dirty hands clawing onto every single scrap of food like the world was coming to an end. 
Husband:        Biting at the bit to get the heck out of there (cringing at the kid next to us and I think I may have even seen him wipe his brow a few times from the chaos of the place)
Me:                 Using my mommy forces to tunnel out everyone and everything around me and focus on Noah eating bite after bite of sweet peas from a Gerber carton while my birth mom sat eating and enjoying herself as if she were a maiden in paradise (the things you will do to make your mom happy on Mothers Day)-*daughter points
STRANGER: older white haired woman in a pink moomoo dress with garlic breath and chipped fingernails.

Back Story: (posts yet to come): Noah got a Ng tube (nose feeding tube) two days prior which was causing all of us some anxiety, discomfort, and red eyes.

Scene: Hubby, Myself, my birth mom, and Noah in his stroller sitting at a small brown table that butted up against the packed dessert buffet stand (I can never look at another chocolate fountain again without gagging after seeing what people will do to one when they think nobody is watching).  I was crouched down feeding Noah his food hoping that nobody would notice me not eating the buffet food myself.  It was as if each spoonful of green glop was a boxing glove to knock away the minutes until I could breathe fresh air and get out of the place. 

About five spoonfuls in I feel some hands come and hold onto my shoulders.  ALERT ALERT:  Hubby is sitting across the table, birth mom is digging a gross shrimp vein out with her fork, and Noahs hands were trying to pull his tube out of his nose......who is touching me!?!

I slowly turn to see this stranger wide eyed, grinning, and breathing her garlic breathe on me.

Me: "Hello?!?"

Her: (in one sentence) "OhdearHappyMother'sDaywhatswrongwithyourson."

Me: (*flashing back to my prior post and thinking "this is it!) "Oh, um, uh, Thank You, um, uh, well....he had surgery a week ago and wasn't drinking enough water so they are helping him stay hydrated with a feeding tube they have put down his nose into his stomach." 

Her: (*still grabbing onto my shoulders as if pinning me to the already sticky chair) "Well, he looks healthy????"

Me: "He is getting there" (*fake grin, head tilt to hopefully shrug her hands off me, questionable look back at her)

Her:  mumble mumble.......then she walked away

Not a horrible experience at all.  Taken by surprise yes, but not the conversation I had envisioned myself being able to stamp a "Mean People Suck!" sticker onto.  I took the high road and kept my calm.  I smiled.  I came to a quick and simple explanation where I didn't have to dive into complicated details about my son.  I didn't get snotty. More importantly, I didn't feel hurt or saddened afterwards like I thought I might have. 

Afterwards I turned to my husband who nodded at me to silently say "Good job Honey!"  It was like giving myself a mothers day gift finally knowing how I would respond/react to a strangers comment about my son.  I was happy with the results :)

The "Noogie" is back...but not for too long we hope

A Baby No More

...a post heading that sounds more like the title to a Lifetime channel Movie than a pivotal moment that I have been dreading...but it did happen...and I found myself casually walking into our half bath next to our kitchen to drop a few tears onto a thin Kleenex tissue as the moment overtook me.

Like most parents you never want to reach that point when your baby is no longer a baby.  In my situation I never wanted to reach the point when my baby no longer looked like a baby but still acted like a cute fragile five month old. 

I am not complaining about the five month old part because I am one of the few fortunate parents that still gets to snuggle endlessly with their Johnson and Johnson smelling bundle of joy.  I still get to keep our crib at the highest setting and save my back from the uncomfortable bending over.  I still get to leave small objects lying around our home and don't have to vacuum every single day.  I can still go out and about without having to worry about chasing a toddler around, and I have been able to celebrate every single tiny milestone that Noah has reached because we have had three times as long to wait for each one of them and they stand out all the more. 

The part that opened my tear ducts is the simple fact that we have now officially approached the next level as a family with a special needs child.  He may be as cute as a button and babble and coo and cuddle but he is growing and growing fast.  He can no longer pull off the just-big-for-his-age look anymore.  He is 18 months old and as such looks like he is 18 months old.  He is really tall/long for any typical 18 month old and sitting in his stroller, car seat, or his portable highchair you can see that there is just something not totally "typical" about him.  Waiters, cashiers, and the every day person who doesn't know us are now taking a few extra seconds to assess our situation.

We have so far been fortunate enough to not have anyone really say anything out of the ordinary to us other than everyone thinking Noah is about to fall asleep because his eyes usually make him look that way.  "Looks like your little guy just woke up" "Somebody is about to fall asleep" "Allergies are getting to me too little buddy."  Just a few of the comments we have had so far which we always reply with "I think you might be right *insert big fake grin*"

I have been trying to prepare myself for the inevitable since learning about Noah's future.  Is there a way to ever prepare oneself to be mentally loaded with really good/nice/educated/mean/poignant/funny/embarrassing and/or factual comebacks or responses to dish out to people I don't know nor care about as I go about my daily tasks?  Is ignoring the situation or comment the way to go?  Do I try and use the moment to teach someone something new?  Do I use this person as an outlet to push my current days emotion onto instead of a family or friend I care about?  Will I be totally thrown when the first real negative comment is made or will my 18 months of thinking about all of this prepare me enough to be the bigger person and say or do the right thing?  What is the right thing? 

We are currently sitting right on the cusp where Noah's out-of-control hair, big toothy grin, and adorable laugh attacks are the topic at hand when approached by people we don't know.  I cherish these comments and remarks because Noah is still young/small enough for them to not really notice that he isn't sitting up on his own yet, or that he isn't able to hold anything or say a single word yet.  For now all they see is a really cute toddler that likes to lay back chillaxed-style in his stroller and laugh endlessly as I pretend I am a race car driver cruising down the frozen vegetable isle while his daddy pushes the grocery cart that he has yet to be able to sit in for more than 5 minutes assisted.

For now we are still going strong with the cute remarks but the lengthy stares are officially upon us. Sooner than not we will just find out what exactly my response might be when I get my first real negative comment from a stranger.  Anyone want to take a bet on how I might react?  I kind of already feel bad for my first "victim" because I honestly have no idea how my Momma-Bear-Self will be feeling after hibernating and juggling all these responses for an entire 18 months *insert real grin*

Noah wanted to copy his new cousin and get a matching crib mobile that projects pictures onto the umbrella...he loves it! Best vision therapy tool ever...and the music is pretty dang good as well :) ***yes...that is a slinky tucked above his crib that is usually hanging above him.  The day he can reach out and pull it down will be another day to go out and celebrate.  His feet might get to it before his hands do though...lol :)

Noah Rolled Over!!!!

Yesterday when I was getting ready for our PT to visit I had put Noah on his back in the middle of our front room.  He wasn't propped on anything and in fact I put him directly on the carpet because our dog was running around and I was trying to catch her.  I went into the kitchen to block our pup and when I came back into the living room Noah was on his stomach!  Noah turned over from back to front for his first time since...I don't even know how long.  I missed it!  I think around 3 months old was the last time he accidentally flipped over but then the infantile spams struck, the seizures struck, and the seizure meds took hold of our little boy.  He has been off his seizure meds for about 5 months now, he is currently 16.5 months old............and he turned over on his very own!!!

Today happens to be my fathers birthday and I think sweet Noah has been holding out to surprise him on his big day.  I have had tears of joy swelling in my eyes for the past ten minutes.  My mom and dad come over on Mondays and Wednesdays to help Noah with his rolling specifically.  Noah totally knew what he was doing and I am so proud of him.

Yay Noah!  (Happy Birthday Grandpa!)

***the video would not load for some reason so I took a bunch of snapshots so that you could see his wonderful new trick!

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. 

OXO Tot 7-oz/ Fist Years Sippy Cup/Tooth Tips Sippy Cup/ Gerber Sippy Cups

Nuby

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.  :)  :)