A Numbers Game

Today Noah:

Weighs 22lbs 11.5oz (almost 25th percentile adjusted)
Stands 2' 7.5" tall (almost 50th percentile adjusted)
Has a noggin that is 18.7" around (almost 50th percentile adjusted)
His weight for length (something that is really looked at by the docs and pretty important) is in the 30th percentile.

So we're pretty happy with these numbers, I'm not going to lie, we'd love to see him in at least the 50th percentile for every category.  But, given his many gastro issues, we will gladly take it!
We had his follow-up appointment with his new GI (Dr Taylor suddenly vanished from Children's and we were never given an explanation or reason why) and she gave us the results of the DGE Scan they performed a couple weekends ago.  It came back NORMAL! Double-edged sword of course because that means that we still don't know why Noah is puking all the time or why he can't transition to solids and away from his bottle and Pediasure all day long.  I'm not too fond of this new doc so we're going to try and switch to someone else.  She wasn't super helpful or knowledgeable about Noah's history (which I think she should have been given this was his first visit with her and she could have looked at his chart more closely as to be prepared to answer any questions or concerns).  It seemed like we were just another number and she needed to get out of there as quickly as possible.  Her only suggestion was to increase his Prevacid dose (we weaned him off a couple months ago but recently started him up on a very low dose) because he was refluxing during the stomach scan.  When I asked about things like digestive enzymes to help get his gut going and hopefully aid in his digestion thus preventing the larger volume throw ups, she looked at me like I was crazy and said that they wouldn't help him.  Ugh, ok, well nothing has until this point so shouldn't we at least try?  They're natural and don't have any negative or long-term side effects, as a matter of fact they don't have any at all!  I guess I'm just crazy!  So, the long-term plan is to keep continuing with his feeding therapy (see below for more specifics) and see how he does in a couple months.  They want us to do a urinalysis and see how his kidneys are functioning and then eventually do an MRI to rule out anything neurological.  Yay, more tests I have to subject my poor son to.  The MRI is last resort or if he gets worse, I am not sedating my son and exposing him to more radioactivity than he already has been in his short little life.  I only want him to dress up and think he's Spiderman not actually turn into him.  So pretty much a waste of almost 2 hours of our lives today with no help or answers.  Surprise!
We also had the first part of his speech evaluation this afternoon.  2 good things came of this, the first is that the therapist is going to talk to Sunny Days and request an OT that specializes in feeding (something I have done in the past but with no luck so far), and second is that he will more than likely qualify for speech therapy even though she was pretty pleased with his vocalization and words.  I am happy about this because this is just another way for him to get therapy for his oral sensory issues.  Hooray!
And finally, we started seeing Dr. Peter, a chiropractor that comes highly recommended from family and we're hoping that this is just another step in the right direction as we seek for answers 'outside the box'.  Noah cries for a few minutes as the adjustments are made and then he is fine.  Mike started getting treated and after watching Daddy go first and not cry (Mike's good at hiding it and wipes his tears away pretty fast, LOL) he is getting more comfortable.
I think that's it, once again, I have to say how proud I am of our little guy.  He's come a long way!

Practicing for the Tooth Fairy

What better way to follow up after our most recent post about ice cream!  Good job Noah, the Tooth Fairy is watching and she approves! ;)

Ice Cream!

What do parents with kids who can't/won't eat solids resort to?  Yeah, ice cream.  It works. ;)

Noah digging into his first bowl of anything! 

Nose dive, I like your style!

Go baby boy!

Guess he's been watching me eat too many Skinny Cows, the impersonation is spot on! ;)

The List

A friend of mine on FB had recently posted a list of words her baby was saying and it got me thinking... What can Noah say?  As of today, here is "The List":

Mama/Mom
Dada/Dad
Babe (synonymous with Mom and Dad, we're trying to break him of this, LOL)
Tata
Ball
Go
Bird
Hat or Hot
Bye Bye
Guaow Guaow (sp? dog in Spanish)
Woof Woof (prnounced oooof oooof, LOL)
Yeah

If I Could, I Would!

Reach around and spank myself for not posting in over a month!!  Or turn back the hands of time! Tsk tsk tsk!
Ok, ok, we did have a cross-county move and Noah was sick back to back with a stomach bug and then a cold that lasted almost 4 weeks.  Nonetheless, there just isn't a good enough excuse in the world for not dropping a quick note about Noah.  My goal for this blog has always been to create a snapshot of Noah's life as an infant, toddler and child.  I want him to be able to read this (God-willing) one day and be amazed at the journey we were on, raising our little miracle baby.  But how can he do that if I neglect this blog?!  I must try harder, and I will.
Okay, so what have we missed since May 20, 2011?  Not a whole lot to be very honest with you.  As I mentioned previously, we moved from Temecula back to San Diego because all good things must come to an end and all of Noah's appointments for Early Intervention and his specialists at Rady's were draining our gas tank and ultimately our bank account.  We thankfully have our condo in San Diego still, although we are still trying to do a modification our loan since our home value has gone down more than 50% of what it was when we bought it.  Yes, the house we paid $335k is now selling for anywhere between $125k-$150k!  So, we're hoping after the dust settles with the estate we can hopefully do a short-sale and get out of here and into our forever home.  We've lived the life of a vagabond since college, and we just can't do it anymore! LOL!
So back at the lecture at hand, what's new with Noah.  He is definitely cruising around a heck of a lot more.  We went from a few steps in the video below to walking around the house.  Granted, it's a 1,000 sq/ft condo, but hey, he maneuvers from room to room, turning corners and all!  He is so very timid, and I think this has hindered his progress in this respect.  He likes to feel the comfort of pushing his toy around and having something to lean on rather than falling and getting back up again.  But, he's improving and if he can be fully independent by the end of the summer, I will be one happy mommy.
What else?  He is yelling up a storm, mostly at Bella and Lola and the occasional passerby he notices from atop our balcony here.  He is really starting to mimic us in the way we talk and what we say.  He has gotten into the habit of calling Mike and I "Babe" because that's all we call each other. So I recently made a post on FB pleading our complete sanity should anyone overhear Mike and I call each other "Dada" and "Mama".  LOL!  The lengths we go to for our children!  He is also doing a lot of things he previously struggled with like putting balls/toys in containers (specifically his little 'gum ball machine" toy) as well as pushing things to start them or turn them off (like his bath fountain toy).  He also loves water, whether it's in a bathtub or in his water table we got him, he can't get enough of it.
On the eating/stomach front his vomiting has improved a bit and we think it has to do with not allowing him to guzzle down a bottle and burping him more often so that he doesn't forcefully burp and spew.  We also made the decision to spread out his bottles further and feed him more at one sitting.  We were previously doing a 5oz bottle every 2 hours to meet his minimum requirement of 30oz/day.  And now we're doing 6oz bottles every 3 hours.  He seems to show a little bit more hunger but not much.  We haven't been able to breach the 30oz/day mark or get him to take more food.  I can say that he is tolerating more bites at one time but the tiny morsels we can give him (because of his out of control gag reflex) are not sufficient to be anything close to a meal.  And therein lies the dilemma.  I hate having to give him nothing but Pediasure all day but he won't take anything else and won't meet his caloric minimum.  We've been searching for answers for so long now, and we've been looking for someone to help us but we haven't been successful.  I scour the internet for hours every week and it's so disheartening.  I mean, I never knew there was something called Pediatric/Infant Anorexia, but it is a real medical problem.  They have countless studies of babies and toddlers who simply refuse to eat and their hunger mechanism doesn't develop properly, a majority of these children are preemies.  So, our next step is a DGE (delayed gastric emptying) scan to see if he has any motility issues wherein his stomach is not digesting food/liquid properly and it sits there for longer than it should causing things like (and not limited to) constant satiety , nausea, vomiting and constipation.  All things, Noah has.  Like so many times before, we are really hoping that this new test will reveal something, anything.  If he does have a motility problem then we can begin to address it and treat it.  Most likely he will go on a low-dose antibiotic called Erythromycin which has a side effect of increased motility/digestion.  Once that aspect is addressed we can see if his hunger cues increase.  If they don't, we will look into either Domperidone or Periactin, two drugs that cause increased appetite.  And that's another dilemma.  I don't want to have to give my child medication to do what should come naturally.  He is currently not taking anything but occasional Prevacid for his reflux and probiotics which are natural.  I know so many preemie moms that have a slew of drugs that they have to administer to their children daily so I am aware of exactly how blessed we truly are in that arena.  But I feel like we have to exhaust all our options to help Noah with his Gastro issues and help him grow and develop.  A couple medications a day sound 100x's better than him having to go the route of a G-Tube placed into his tummy.  If it weren't for his eating/stomach issues, I think Noah would be in such a better place right now.  If we didn't have to worry about him constantly gagging,vomiting, and refluxing through his nose (yes, he still does this where we have to clear his airway with the Nose Frida and do a nasal irrigation; and it scares the bejeezus out of me), poor weight gain, etc, I believe that we could be like any other family. And unlike so many doctors who insist on giving the "behavioral" label to things they can't figure out, I have to believe that there is a logical/scientific reason why my son can't eat like a normal 1.5 year old.  
Enough of my best impersonation of Debbie Downer, Noah has come such a long way and I am so proud of this courageous, resilient, head-strong little boy.  I love it when he calls me "Mom" or "Mama", I love it when he does his angry eyes and ojitos (he blinks/bats his eyes at you), I love it when he dances to any kind of music he hears (even the iPad jingle on the commercial), I love it when he points to the birds outside when he hears one chirp, and I love that I can kiss him goodnight every night in our bed because there are so many parents who never even got that chance.  We are gonna fight the good fight and hold his little hand every step of the way.  It's our life mission and the hardest and sweetest job I've ever had.  As always, please continue to keep him in your prayers because we can't and will never be able to do this alone.

Some recent pics for your viewing pleasure

Okay, so he's still not eating but he is doing this...

Color me happy, ecstatic, elated, jolly, content, thrilled, and anything you want!  My baby is on the road to walking!  Praise God!

Eczema & Allergies

We took Noah to his pediatrician today for a little rash on his shoulder that turns out is eczema. He has also had some congestion over the last few weeks that has not cleared despite his nasal rinsing and humidifier. We had the adenoidectomy back in Feb so it's too soon for his adenoids to have grown back and we were hoping this would be the last of his "nasal" issues. But unfortunately he's been having that little congestion in his nose as well as a bit of snoring during his sleep sometimes. 
Nonetheless, she prescribed him Atarax and I'm not very familiar with it. It's an anti-histamine that is used for itchiness and can also be used for nausea from motion sickness as well as anxiety. It causes marked drowsiness so we're going to just try and give it to him when he's really bad or at bedtime. I don't know, just seems weird to me. We decided to spray some Nasonex as well to see if that helps a little. He's been having some vomiting episodes the last couple of days where his throw up looks like (perhaps TMI, I apologize) globs of phlegm and he's really bearing down/retching to bring it out. So something's definitely going on. 
I think it's time to start getting some allergy testing in order. It's allergy season around here and I'm just wondering if he has severe seasonal allergies that are onsetting this vomiting.  So he now has 3 more meds added to the long list of medications he's on at any given time.  This preemie thing is no joke.