A Double Header

The Wee T had 2 big appointments today.  Daddy took him to see the RD and then Dr. S (cardio) in a back to back marathon.

DIETITIAN

Today Tiernan saw Judy instead of Jessica.  While they are all competant, I wish he had seen Jessica.  She knows him better.  And Judy thought he was a "moo cow" when he was clearly YODA for Halloween.  I mean...REALLY????  Still not sure I can forgive that.
Anyway, his stats are now as follows:

Weight: 24 lbs 1.5 oz=30th percentile!  (up from 25th)
Height: 82 cm (2' 7.85")=15th percentile (unchanged from last time)
Weight for Height=50th percentile (still well proportioned)
Head size= 90th percentile!  no question he is a Flynn.

So all those numbers look great!  He is eating more and more all the time.  So with all the information, Judy agreed that he is well primed for us to...

...wait for it...

WEAN. HIM. OFF. THE. TUBE!

Holy moly!  That is cool.

Problem is that she makes it out to be so complicated.  It takes about 2 weeks to get him down to 20 % of what he had been getting.  She is concerned that his oral intake is not diverse enough.  I'm not so sure.  However, we are going to keep working on it. 

Currently, he will eat all kinds of things. 

Gerber Entrees = pasta, beef, chicken, mixed veg, rice
yogurt
cheese
berries
mandarin oranges
fruit bars
dry cereals
graham crackers
avocado
beef ravioli in tomato sauce
water
APPLE JUICE
and most recently, he has been drinking some MILK!!! 

At any rate, the fact that the "WEAN" word has been uttered is pretty exciting, regardless of whether or not he will be successful immediately. 

CARDIOLOGY

I was at school when everything was going on, but awesome nurse Jodi sent me a text to tell me that he didn't cry through the entire EKG!!!!  He ALWAYS cries during the EKG.  But this time he was a big brave boy who helped with the stickers. 

EKG=Fantastic

He is now only on 3 meds, and they are all heart meds:
 
Enalapril = 2.5 mLs twice a day (up from 2 )
Aspirin = half a tab once a day (unchanged)
Lasix = .5 mL once a day (unchanged)

Dr. S is really happy with his stats.
ECHO was pretty much unchanged from last time.  His CoA still looks open to the size he ballooned it in October's Cath.  The valve regurg is still moderate.  Glenn site looks great.
Oxygen Saturations came in at 79 the first time, but the second time they were up to 89 so no worries there.

All in all, things are pretty spectacular.  He is not due for his next cardio appointment for 6 months! 
SIX MONTHS! 
TWICE. A. YEAR! 
CRAZY!

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And then, while I am working on this post, he gets mad, holds his breath...aaaand passes. out.
Yeah.  Good times.
He's okay now.  But sheesh! This boy is all about the DRAMA!!!!!

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Let the blending begin

So I finally found time got over my anxiety and made a batch of homemade blended formula for Tiernan.  Why was this such a big source of nerves for me as a mom????  I think it boils down to this: once again, although as a mom I KNOW I am capable of providing proper nourishment to my children, the fact that the Wee T has been tube fed for most all but 3 months of his life (if even that) has caused me to doubt that instinct.  Don't get me wrong.  I am so grateful for the presence of an RD (registered dietitian) in our lives.  But the more I think about it, the more I realize that having someone tell you how fast, how long, how much and what kind tends to cause little vampires* to creep in and say things like, "you don't know what you're doing." or "who do you think you are making your own formula.  there are professionals who make sure the formula is perfectly balanced for your son." or "sure, you may know how to feed a healthy child, but Tiernan is not a healthy child."  Ugh!  DIE VAMPIRES DIE!!!!!!*

*funny how and where musical theatre references enter my life....wait....it's pretty much everywhere and all the time.  never mind.

Anyway, Sunday night I just killed that vampire.  Blended him right up and now we have a tube fed boy who is getting REAL FOOD!!!!!  Not full time yet.  But I will be working up to that.
I have started with baby food based formula since I am stuck with my little (not so powerful) blender at the moment.

The Recipe That Started It All

2 oz strained chicken or turkey

3 oz strained peas and carrots

3.5 oz applesauce

1/4 Tbsp Extra Virgin Olive Oil

5 oz Whole Milk

1.5 Tbsp rice cereal

1.3/4 Tbsp milk powder

1/4 Tbsp dark corn syrup

I hope to start doing some recipes to include other things like spinach, avocado, flaxseed and quinoa. Since I have this opportunity to feed my toddler superfoods, I feel compelled to do so.  

As I expected after hearing from several other moms who blend (that sounds like a book title....Moms Who Blend...haha) the days of letting the bolus go in via gravity in under a minute are gone.  The HBF (homemade blended formula) is too thick and must be pushed in.  We had a few ounces come back at us as we figure out the best method for T, but after 3 days it seems to be going well.  

Following the first bolus, I asked him to share his reaction to the new formula on camera.  I got this.

I will take that as a success.  I know it was far too early for him to be experiencing a difference, but I am sure it feels different in his belly.
Since that evening we have had a few other successes as well.  We are once again nearly off Zantac.  It is down to 1 mL 1x daily.  Practically nothing.  This Friday I do believe we will call it quits on all tummy meds!

And then there is this....

...that is apple juice, friends.  The Wee T has not been willing to drink anything but water since getting his tube.  I find it hilarious that with Big T I watered down any of the small amounts of juice I allowed him each day but am now giddy with excitement every time I look at this picture.  He has yet to drink an entire can (80 calories) but yesterday he was close!  Victorious!

Thnaks to all you Moms Who Blend for the encouragement and support as I killed my vampires.  :)

So here's where the multi blog thing gets complicated.

Do I blog this on Tiernan's Tube because there IS a direct correlation to our even being able to do such a thing as I need to blog about or do I blog on the T n T Brothers because it involved both brothers?
What to do?  What to do?
Blogger Queen Heather Heywood, please guide me in my decision.  :)

[waiting to feel her energy tell me what to do....]

Okay, I have channeled the spirit of the Blogger Queen and I have decided to just go ahead and put it on this site.  (in case you hadn't figured that out since this is where you are reading)

Yesterday was a big milestone for the Wee T and for the rest of us.
We drove to Bellingham...2.5 hours to the north.
Why, you may be wondering, is this such a big deal?
Several reasons come to mind...
1. Not wanting to get too far away from cardiologist related people.
2. Tube feeding can be a challenge on the road.
But the biggest obstacle was definitely
3. Tiernan does NOT have much tolerance for time spent in the car.

No.  Really.  He was never the kid who fell asleep the instant the motor starts.  He is the kid who started screaming in that second and would then desat to around 65 and subsequently begin to gag and retch and soon mommy would be in a state of panic wondering if he was going to aspirate or something.

So, a tad stressful.

His riding stamina has improved exponentially since we turned him to a forward facing position.  His OT work with the Vestibular System has been pretty powerful as well.

So this was a first step to the bigger goal.  I actually feel like we are training for a marathon.
Both sets of grands, my sister and her husband and 7 year old son, my grandma and many friends all live in Missoula Montana.
A full 9 hours drive from us.
I have been aching to get back for a visit.  Jason and I have not been there since well before T2 was born and he has never been there.
For all of the above stated reasons.
Those and my (perhaps unnecessary) concern that him going over 3 mountain passes might have been rough for him since his oxygen sats are in the mid to low 80s as it is.
We are 99% sure this is not an issue.
But that darn 1% of my anxious mind will cause my body to grab the oxygen tank that has remained untouched in our den for the past 14 1/2 months just. in. case.

Anyway, the biggest obstacle again, is whether or not T will even tolerate long stretches in the car.
Soooo, we have a plan.  It includes starting with shorter jaunts that will build up his endurance.
Example....going to Bellingham.
Without further ado, here are some fun moments captured expertly on digital film for all to see as proof of this most important event.

T SPIES GUNTHER

 Luckily, Gunther is a highly tolerant kitty.  (Ihe has been appropriately desensitized by Kevin Gerard, Auntie Mary's oldest....in his early 20s.  You were thinking perhaps a child?  No.)

I love how the entire time T is climbing he is watching to make sure no one will stop him.  

I'm such a good mommy.  Anything for a cute photo op.

(and resulting blog post....yes. I think in blog posts)

This was definitely one of  Tiernan's favorite hang outs at the Gerard home.

T MEETS GRIZZLY, AKA GRIZ, AKA GRIZABOO, AKA BUDDHA AND FALLS IN LOVE

I tried (and failed) to get more pictures of this sweet new friendship, but they are just both too fast.  :)

My child REALLY loves animals.  For now he will just have to settle for the pets he has via Nanny K.

ACTION SNOT...ER....SHOT

Tiernan seems to have inherited his daddy's seasonal allergy issue.  Dang it!  Why couldn't my lucky genes win out on this one?!!!!  Both boys will apparently suffer.  

Anyway, this is one of maaaannnnnyy times this scene was played out yesterday.

TO THE PARK WE GO!

I don't actually know what T was doing here.  I just really like the picture. 

The Next Next NEXT Karate Kid.

The Gerards are such big dog lovers they visit the dog park even without Griz in tow.  They are Tiernan's kind of people for sure.  

T got such joy at just walking on the trail,  Mostly because there were so many dogs who passed by.

No doubt figuring out how to scale that fence.

I love catching moments with him that are so normal!  And this one turned out so perfectly.

I LOVED this shot...until I noticed the snot bubbles coming out of his nose.  Must. Learn. Adobe.

And speaking of normal....

Is there a child who DOESN'T love this move?

We arrived home late.  Around 11pm.  Both T's slept most 

[this blog interrupted by a little one wanting to type his own thoughts]

of the way.  T2 woke up quite annoyed at still being in the dang carseat, but settled down when I showed him pics and vids from my iphone. 

Which brings me to my last thought.  

Even though T did quite well on this small journey, for the MT marathon I think we may be giving up the fight, breaking down and getting one of these babies.

Don't judge.  :)