Saturday, March 31, 2012

Be careful what you pray for...

For the past couple of weeks I have been having a hard time with constantly having someone in our house (Dominic's nurses).  I say this carefully because I honestly could not do this without them.  There is just no way to properly take care of the other children and attend to his high needs alone, not to mention doing any sliver of housework I can get done (which honestly ain't much).  This has been a real struggle for me, having someone you are not friends with organically, but rather developing a friendship via forced encounters.  I have a hard time balancing that delicate friendship with my role as boss, making sure everything is done correctly, and delegating tasks in a firm but gentle manner.  It's just exhausting.  I want to be careful not to sound ungrateful though.  Luckily his nurses are wonderful, hard working, and know what to do without me telling them everything, every step of the way.  I am grateful for them, but still, tired.

All that to say God answered my weariness by having our weekday nurse unable to come for three days. We took advantage of this and did not ask for a replacement nurse.   It was refreshing to be alone with just the family and to see again that we can take care of Dominic all by ourselves.  It was good to be able to cuddle him without someone there and just be his mom.  His daily routine of care has become second nature to us so it really didn't seem too bad at all.  Mike was off of work so everything flowed smoothly.  Then Thursday came.

His regular nurse was still sick so I asked for a replacement.  I got the nurse whom I sent home early and asked not to come back a few weekends ago.  Be careful what you pray for... God is always faithful in giving you what you need, not neccessarily what you ask for.  In my case, I have prayed for humility.  So, I buckled up and got ready for "one of those days" and just focused on being positive and grateful.  And actually, it was just fine!  I tried to love her for who she was but was of course a bit on guard since last time her comments about disagreeing with The Church on certain things drove me crazy.  Let me explain... in an appropriate forum, disagreements are fine, even good, as they lead to growth and love for neighbor despite, or because of, your differences.  But not when you are at work, in someone else's home, within ear shot of young, malleable children, who have no business at their age knowing that people hate The Church.  It is clear when you walk into our home by the religious artwork and chapel what we believe.  It's just not appropriate to come into someones home and talk about why you think their religion is wrong... in front of their children.  A little respect and self control goes a long way.

All that to say I think she got the point last time that I was not happy about such things being brought up in front of the children (as Dominic's regular nurse says, I don't hide my emotions well) and this time nothing inappropriate at all was said.  She was even asked to cover the weekend night shifts and this has worked out great.  I came in last night after putting Mary back in her bed after she had gotten up and the nurse was trying to figure out how to run a power point presentation on her new laptop about the vent Dominic is on so she could learn more.  That's what I'm talking about!  What a difference from the nurses I have caught sleeping!

I am like a stubborn mule, being so gently led by God, while I "hee" and "haw" and pull all different directions, He is constant.  He just holds on to the rope, gives me freedom, and patiently waits for me to calm down.  When I do, he is so faithful in trying again to gently lead me to the abundant pasture of His love.  Thankfully, He IS patience and love.  If not I would surely be blindly feasting on the weeds I am so attracted to.  I have come such a short way, but am thankful for His faith in me.  To think, being loved despite your disobedience, to the point of an entire lifetime of The Shepherd searching for you, with the singular goal of bringing you home.  Wow.

In Jesus and Mary,
One of my favorites...

Tuesday, March 27, 2012

Dom's new tubes

Dominic had a very ordinary kid kind of thing done yesterday... he got ear tubes.  It's kind of nice to have a normal surgery.  Hmmm, that sounds bad.  What I mean is everyone knows what ear tubes are so there is no explaining to do when you tell people about that.  There, did that sound better? 

After the ear tubes, which is a simple surgery but always complicated because of putting him under anesthesia with all of his co-mobilities, he had a follow up hearing test.  And the results are... drum roll... he will fit in with the old guys playing chess outside barber shops, sporting his hearing aides.  (Not that I've ever seen this, but I'm sure it happens lots in far off romantic places like Venice...).  His results are almost exactly the same.  Mild hearing loss in low pitches, moderate hearing loss in middle pitches, and severe hearing loss in high pitches.  So, all you ladies that squeal about how cute he is when you see him... save your breath, he can't hear you.  Instead, you will have to adopt a manly tone and call him "sport" and "champ" followed by a little under cut to the chin.  Turns out he can't hear things like vacuum cleaners, making my job easier if in fact I vacuumed more.  Hmmm, maybe I should take advantage of that before he gets his aides in.

So, I have been calling for 2 days trying to get an appointment for the hearing aide fitting session without success.  Luckily, I have the e-mail and phone number for the therapy manager.  And director.  And hospital president.  Tomorrow I will get it done... for sure.

And another highlight of my life: a new NON-leaking g-button!  He had his old one (that has been broken for weeks now) replaced with a different brand.  If it were possible to be in love with silicone I would say I love this thing.  Heck, I'll just say it, I love this thing.  He has had NO leaks from around the button, or out of the button since yesterday.  This is a huge deal.  With the old button we constantly had wetness we were combating because it would lead to sores.  Last weekend I hear a shrill shriek in the back seat from our alarmed nurse because he was having a mini-volcano after she fed him.  Crappy button = wet shirt, pants, diaper, car seat, sores, suckiness.  I get so excited every time I feed him through this new one.  I love it, love it, love it.  (For you med moms out there, it's a AMT Mini One balloon, lower profile than the Mic Key).

So, here's to hoping there are "tactical" looking hearing aides (to make his Daddy happy).  In a few short months he will get his glasses, and maybe in a year or so a walker (depending on how the therapy goes)... that's gonna be a cute day.  I can guarantee I will find him some suspenders for that day with a little old man shirt.  My little old man, how I love him. 

In Jesus and Mary,

Despite having surgery earlier in the day, he was a "happy little friar"
with the new friar in town, Brother Seamus
(I made these beards for the big boys so they could play Friar :)

Rolly is the new skinny (the old button... Boooo!)

Tuesday, March 20, 2012

To my PT-self of 6 years ago...

While I am no longer working as a physical therapist, I did practice for 6 years in pediatrics before Dominic was born.  God willing, I plan to go back to work some day, in some capacity, when life calms down and I'm not needed here as much.  I often think about those years when I was practicing and laugh.  A yearning, grateful laugh for the opportunity to see the amazing kids I got to see everyday, and an embarrassed laugh because of some of the stupid stuff I did.  Here is my list of the top 10 things I wish my "now self" could tell my "then self":

#1. Don't lecture families about how important it is to do exercises, wear braces, and make PT a top priority in their life.  They already know all of this but it sometimes literally can't be fit into the day, and honestly, it's NOT the most important thing in their life.

#2. Don't EVER buckle a child into his wheelchair when the mom didn't already have the seat belt fastened and proceed to tell her how important it is to always have this done.  She knows.  You're lucky you didn't just get decked.

#3. Don't talk to the parent like they don't know stuff.  Assume they do and ask them if they would like clarification.  Remember, they are the expert on their child, not the doctor.

#4.  Don't get so irritated when a kid in a wheelchair, or with special needs is a few minutes late.  Your life is not that hard.  You have no idea.

#5.  Don't ignore the siblings of a special needs child... they get ignored enough.  Incorporate them into the treatment as much as humanly possible, or else they may start to fake a limp so they get "special therapy time" too.  :)

#6.  Realize the sacrifice of bringing a kid to therapy every week, sometimes even 2-3 times a week, and make every session worth the time.  If they are sleeping, wake them up.  Use every second of time you have wisely!

#7.  Don't make stupid goals.  Find out what the kid likes to do, and work from that.

#8.  Be a little more understanding that wound care or unpleasant treatments of their child makes the parent want to knock you out.  Stop saying "it's okay, older kids say this doesn't hurt."  Bull, it hurts so just admit it.  Apologize profusely.  Hug their kid.  Apologize again.  Make sad eyes to the mom.

#9.  Give each kid the VERY BEST of you for their entire treatment time.  Even if you're tired.  Even if you have a headache.  Even if you're 9 months pregnant.  Feeling short changed sucks.

#10.  Don't touch, mess with, or push a kids wheelchair without permission.  Their chair is like an extension of them and it's irritating having people act like they have the right to touch it.

If I ever go back to work, I can't promise I will be the best therapist, but I sure will be the most empathetic.

In Jesus and Mary,

Brother Timothy Stephen cuddling little man  :)
(Because a blog post without a picture stinks)

Saturday, March 17, 2012

How to blend food for tube feedings

I have been asked by a fellow medical mom out there to post about how to make baby food to give through the g-tube.  Because I do this how I cook (by the seat of my pants) I have been having a hard time thinking of instructions.  Here's a stab at it:

I go off of a chart the dietitian gave me that says how much food, at different ages, a baby should get.  Depending on his weight and age there is a norm for how much milk, veggies, cereal or grain, and meat they should get.  Luckily the dietitian we use now (we fired the old one) is very laid back so I make the plan and she okays it.

I just thought about how I fed my other kids at this age and went from there.  With the other kidlets I gave them 3 solid meals a day with bottles and snacks in between, so that's what I did here.  He has 3 meals with almost pure baby food (with a little breast milk to thin it out) and 4 "bottles" spaced around that with a little baby food to make them more substantial.  I took the amount of each type of food (milk, veggies, cereal) needed for the entire day and just did some math to space it out over the day.  He gets fed every 3 hours during the day and once over night.  Here is his schedule:

8am, 2 pm, 8 pm solid meals- 50 ml breast milk, 80 ml fruit/veggie, 25 ml quinoa
11am, 5pm, 11pm- 155 ml breast milk, 20 ml veggie/fruit, 20 ml quinoa
3:30 am- 155 breast milk, 40 ml quinoa (to make his tummy feel fuller and help him sleep better)

OK, now for the food choices.  I am introducing new food every 3 days to check his tolerance, just as you would a baby who eats normally.  He has other special dietary needs thrown in there (sucrase deficiency) so I work around that too.  My goal is to have a complete array of healthy food I know he can tolerate so by the time he is off of breast milk so we have a complete nutrition blend.  Each time I figure out a new food he can tolerate, I will add that to my mix for next time I make baby food and put a test food in separate containers.  For example, now I know he tolerates spinach, broccoli, green beans, and butternut squash, so I blend those foods, mix it up in a huge bowl and them put that mixture in mason jars to store.  This saves me time when I am preparing the feedings, everything is all mixed up and ready.  Then whatever new food we are trying I add separately to the feeding so I don't contaminate the mixture, in case he can not tolerate it.

Making this food could not be simpler, so I encourage you to try it!  I will admit right here that my awesome parents bought us a Vita Mix, a blender on steroids, so it does make it easier.  But don't despair!  I made baby food for the first 3 kids with just my ordinary blender, so you can do it!  With a regular blender you may need to add a little more liquid to get it as smooth as you want.  The biggest thing is to blend the heck out of the food so it doesn't clog the tube.  With a regular blender, I used to literally shake the blender as it was blending to get the food all down by the blades... don't be scared, you've got to mis-treat those sometimes :).  Here is what I do so far:

-Apples and Pears: peel, core, cut up, bake covered at 350 until tender with a fork, blend, add water in necessary to get thin enough.
-Butternut squash: cut in half, remove seeds (save for roasting- mmmm), place cut side down and bake 350 until tender (30-45 mins), blend as above.
-spinach, green beans, broccoli- steam until tender then blend with cooking juice for added nutrition
-red bell pepper: cut up and take out seeds, bake 350 until tender.  Remove skins, blend with water for consistency
-Quinoa: I powder mine first by putting it in the blender and letting it go until it's fine, but as he gets bigger and I have a full nutrition blend I feed him I will probably just cook the whole seeds then add to the mixture to be blended with the other foods.   For powdered, I don't measure (sorry).  I put about 2 cups water in a pan and heat until boiling.  I add powdered quinoa and wisk vigorously until the desired consistency (baby food); remove from heat.  Whole quinoa: double the amount of water to the amount of quinoa ( cups water for 1 cup quinoa).

For all foods, I make big batches and freeze, so it's easy for the next 1-2 weeks to just grab a jar out of the freezer when I run out.  Remember, if you are freezing in glass jars, allow the food to freeze first, then put the top on, if not you will have a mess!

 I would encourage you to give it a whirl (pun intended)! If you are overwhelmed, pick just one food to blend for now and add it to the formula your child gets.  I have the chart the dietitian gave me, and I'm happy to share, but i don't know how to attach it to the blog, so if you want it, e-mail me at You will gain your confidence and your child will be all the better for it!

I am truely a novice at this, but a determined novice.  Luckily there are plenty of people out there who have taken this mission on and they are much more knowledgeable than I, so here are some other resources for ya.  (I like this one)!/pages/Blenderized-Food-For-Tubies/195156907193185  (the above guys facebook account- you can connect with other families who blenderize)

Google: "blenderized diet"... there is so much support out there!!

Happy Blending!!

Thursday, March 15, 2012

Rebel with a cause

For any of you who have known me for any amount of time, you may know that I have a reputation, in my former life as a teenager, to be a bit, say, rebellious.  Now I am tempted to defend myself against that judgement but I know if I did my momma would hack into this blog and set the record straight, so I'll come out and say it right here: I was rebellious. My total disdain for authority and everything mainstream used to get me into all sorts of trouble, made for alot of time being grounded, and no doubt caused my poor parents all sorts of stress (sorry 'bout that).  And until recently I saw no use for this drive within me at all (except for possibly self-mortification by fighting the urge to abandon my duties).  But now, I see that perhaps God did have a purpose when he placed that within me; perhaps it was for my children, especially Dominic.

I have a natural uneasiness for authority (not church authority because I know they have the truth, but doctor authority whose "truth" can be legitimately questioned).  I think this is why I ask doctors 'why' so much and challenge the response 'because that's how we do it.'  I also think this is why I get so worked up with the real food issue, and why I even thought to question the mainstream recommendations in the first place.  I also think this has alot to do with why I am still pumping (have I mentioned I REALLY want to stop??).  Although I know it is the best nutrition for him, I have this urge to prove to the naysayers that I can do it (you'd be surprised, while everyone has been supportive of it, are all sort of shocked to hear I pump still and give me the 'formula is okay you know" speal).  So I'm channeling my rebellious nature into something good and productive... giving milk for sweet D.

So finally, I have found my cause.  It's good to know all those years of disorder can be wrapped up neatly knowing I am putting my rebelous nature to good use.  Lets just pray Mary Grace takes after Mike, not me in that respect :/.

**And on a side note, my intention in my real food crusade is not to make any parents who feed their special needs child formula to feel bad or guilty.  I believe it is the responsibility of the medical community (which I am a part of as a PT) to recognize the value in real food for the defenseless and show them the same respect they would to their normally functioning patients (if I fed my normal kids only pedisure I would be sent to CPS I'm sure).  So, please, all you medical moms and dads out there, this is not aimed at you since I know you already see your child as having great purpose, but at those whose job it is to educate the families on how to take care of our kids.  To bring to light the mantra they unknowingly preach that diabled kids don't deserve what normal kids do.**

Wednesday, March 14, 2012

Yippee for Real Food!

I know I have talked at nauseum about how real people deserve real food, but I think about it so much these days I believe it's becoming my new crusade.  I am picturing in my head food for g-tube fed people with complete nutrition, ready to eat (though the g-tube).  Like baby food on steroids, only fresher, better.  A REAL alternative to formula from pharmaceutical companies.  Hmmm....  (and just to clarify, I'm not talking about babies drinking formula, I am talking about 5 year olds, 15 year olds, 50 year olds getting their nutrition solely from formula... believe it, it happens.  In fact, it's the norm.)

Anywho, yesterday I made sweet Dominic spinach, broccoli, green beans, apples, pears, and red bell pepper.  We got the OK from his GI doctor to start introducing foods with sucrose, hence the apples and pears.  I use as many organic ingredients as I can (Costco is great for this) because sweet man is having enough issues without introducing all those pesticides.  I roast everything I can because it makes it taste better, in case he burps it up, and steam the rest.  Here's some pictures from yesterday...

I freeze the baby food until it's ready to eat to keep it fresh

Naughty man likes to grab at his tube... and often makes a mess when he pulls it out

"Stop taking pictures mom!"

Saturday, March 10, 2012

Another success

The other night we brought the whole family to St. Elizabeth Ann Seton Church for mass and benediction.  We have been to the Cathedral down town but that is the only church we have ventured out to.  The folks at daily mass at the Cathedral have gotten used to Dominic for the most part and while we still get some looks most people just smile sweetly at him.    This was the first time the people at this other church have seen him so we got lots of looks.  Most shocked, some smiles, one lady even did a complete double take and stopped in her tracks (lol!).  We had a couple of people walk up and want to talk with us, and we finally met a family that I've "known" on the internet (through the homeschool group) for quite a while.  They also have a special needs child and it was beautiful to finally meet him.  The looks and double takes don't bother me though, it's to be expected... it's not often you see a baby as sweet as baby Dominic ;).

I have to say I was so impressed with the youth that were there.  I had almost every door opened for me (and I had alot of coming and going with diaper changes, feeding, going to the car...).  These young men would literally run to beat me to the door to open it.  Never have I had that happen!  It was so refreshing to see, little gentlemen in the making.

But that's not the best part of the night.  We got to go to mass said by Father Juan Diego.  He said an awesome holmily, which I missed the punch line of because I was in the bathroom with the kids.  I was trying so hard to listen through the muted speakers in the bathroom and just before he said the punch line a toilet flushed... I had to laugh... the plight of a mother.

After mass we had the opportunity to touch the humeral veil that was surrounding the monstrance which was holding the consecrated host, the body of Jesus.  Each person got to kneel and touch the veil for a moment, realizing the true presence of our Lord.  Fr. Pio draped the veil over Dominic and I prayed for healing, if that was God's will.  All the other children touched it while Mike and I held them up in prayer.  It was so beautiful.  A moment to completely abandon ourselves to Jesus, basking in humility of being so close to Him.

It was another successful night of being out as a family (despite forgetting the back up battery for the vent... good thing the church had outlets!).  A triumph, proving to ourselves that we really can handle this new life.  I am so thankful for the opportunity to allow Dominic to do his work, of showing others the face of God, and hopefully of being a witness to the goodnes of life with all our little kiddlets.

In Jesus and Mary,