DOC Band



Troy has been in his DOC band for 3 weeks now (started on December 8th, 2011).?? It is amazing how quickly his head is changing shape.?? We were told at his last appointment that he wouldn’t need a second band so he should have only five weeks left.?? I wasn’t going to decorate it because I often don’t care for the decorated/painted look but I found a pretty cool company that is working on a little something for me.?? I’ll detail that more later when it’s done so more pictures of the DOC band in a week or so.

 

 

Look who has started sucking his thumb??? I wouldn’t call him a consistent thumb sucker but I do catch him with it quite often.?? I try to substitute the pacy as quick as I can though because I would far prefer to break a pacy habit than a thumb habit.?? So far, none of my kids have been thumb suckers so we’ll see how far Troy takes this (it does look so cute though).

It feels like it has been so long since I posted an update that I hardly know where to start.?? Troy is helping me type this blog post too and I am having to delete?? every fifth word thanks to my unhelpful assistant who is now gripping my thumb. I am a driven woman though and I really wanted to get this done and posted today so I will do my best to work with this little monkey.

TROY

Let’s see here…first topic is eating.?? As you know, we have struggled to get Troy to drink enough formula to reach his minimum hydration requirement of 28oz per 24 hours.?? Calories are not the issue.?? In fact, he weighed 16.9 at his six month appointment last week which is the size Tori was at her 12 month appointment (he was also 5 ounces heavier than Quinn).?? Because he has to drink nectar consistency though, he doesn’t get as much fluid per ounce so the concern has been dehydration.?? The week of Christmas he was eating TERRIBLY and Jim and I were emotionally exhausted and convinced we would have to put an NG tube down him.?? I took him to the Urgent Care on Christmas Eve because he had only taken 13 ounces and I was scared that if he dehydrated we would end up hospitalized on Christmas.?? When I got to the Urgent Care though, I was DELIGHTED to discover a viral rash.?? First time a rash every brought a grin!?? I then had hope that his reason for excessive fussiness and poor eating all week had been due to a virus that we had not detected.?? Sure enough, by Monday he was feeding much better.???? He still doesn’t usually meet his minimum requirement but he is gaining like a champ and not dehydrating so I’ll take it.?? One thing we did figure out in feeding therapy though was that Troy is very sensory sensitive.?? I was telling the therapist (Nicole) that his best feeding times were early morning and late night.?? I assumed he was hungriest then.?? Later in our conversation she mentioned that one of her patients would only eat while on an exercise ball being bounced.?? That got me thinking.?? Troy LOVES to be on the exercise ball and sometimes it is the ONLY thing I can do to calm him.?? During that particular session he was refusing to eat for either of us and it had been several hours since we had fed him.???? We turned the lights low, made the kids whisper, and I bounced him on a ball and guess what??? He ate.???? He is distracted by the tiniest sight or sound so when he is having trouble organizing, I have to create a sensory free environment.?? We have found that feeding him in a dark quiet place while being rocked or bounced will make a huge difference.?? I also switched over to the Dr. Brown cereal nipples.?? Those are working well for us but we can only use them for about a week at a time before he starts splitting them too open and then gets frustrated with too high of a flow.???? I have also settled on Beechnut Rice cereal to thicken his formula because I have tried several brands of Rice and Oatmeal and at the end of the day, the Beechnut Rice mixes to the best consistency by far without clogging the nipple.???? We are starting to introduce some baby food as well since he is SO interested in our food and drink (in fact, lately his favorite toy has been a Red Solo Cup:).???? He has had applesauce and bananas so far and LOVES to eat.?? I bought the orange Boon spoon feeder and LOVE it!!!!!!?? It works awesome, cleans easy, and is so much cleaner for feeding.???? I bought a similar one from Walmart but I don’t know if it will work quite as well as the Boon one or not.

Developmentally he is doing great.?? When we went to Cranial Tech a month ago they really encouraged me to put him down on the floor as much as I could.?? No swings, bouncers, bumbo’s – nada.?? It was great advise because he is loving his freedom.?? He rolls everywhere.?? I caught him under the tree yesterday removing my lights and playing with an ornament ball.?? I wondered all season if he would figure that out and sure enough – he did.?? I think it won’t be long before he figures out an army crawl because he is trying to get to a?? crawl position.?? He doesn’t lift his back end up but he is pulling those knees forward and locking his elbows now.???? He screams when he gets locked alongside the couch or entertainment center though.

We are also noticing that he loves buttons.?? :)???? Ty gave him an Xbox controller one day and he CRIED CRIED CRIED when his sister took it away.?? He also loves my phone.?? Is this sounding familiar??? He is showing signs of being a major busy bee so I am wondering just how hyper Troy and Ty will be as a duo.?? He wants to play play play and if he could take off, he would.?? Once he can crawl, it is all over.

Also like Ty, he is still very social.?? He loves to talk to people.?? I have had to giggle at him in waiting rooms at PCH because he gets so excited when other babies come in.?? He kicks and coos all over trying to gain their attention.?? We love how he often turns his head up to look at us when we are talking like he is totally engaged in our conversation.?? He often doesn’t like to be held face out because he wants to see my face and talk to me.?? He loves to put his hands on faces too.?? I also love how he laughs when we laugh.?? He couldn’t be anymore precious.

He loves the attention from his older brothers but I am a tad concerned that he views his sister as his nemesis.?? He doesn’t always like to share my lap with her (he was pushing her yesterday in fact).?? I think she violates his space to much and he yells at her for it.?? She also takes things from him sometimes and THAT does not go down well.?? I really had this idea that my fourth would be an easy going little guy and the “baby” of the family but it isn’t looking that way.?? Tori and Troy are going to be interesting together because she loves to dish it and he ain’t takin’ it.?? He will outgrow her in short order too (which doesn’t bode well for her hee hee).

Troy also enjoys music culture hour with Jim.?? Daddy sits him on his lap when he gets home from work often and they watch YouTube Music videos together.?? Jim is introducing him to all the latest greatest rockers and (blasts from the past) and Troy is thoroughly enjoying this homeschool curriculum.???? He squeals and kicks away in excitement.

As I said, his toy of preference has been a Red Solo Cup (I giggle at that song) but he also loves Sophie and the Baby Gears toy I bought him for Christmas.?? I also couldn’t resist the Boon Nightlight.?? Way too pricey but I really loved it and thought it would be a good gift that would keep giving for longer than baby toys.?????? It is a modern looking 3 tiered pedastal that holds 3 balls.?? When you turn it on, the balls light up and you can either choose a color or rotate through a spectrum.?? It will stay on for 30 minutes?? OR, you can charge the balls on the white setting and give the balls to baby and they glow in dark (green).???? Since he is still swaddled at night and the crib is in our room, he hasn’t had the opportunity to experience yet but soon enough…

(And yes, he still loves swaddling even at six months.?? He gets his arms free during the night but he prefers to fall asleep swaddled.)

His excezma continues to be a bit of a trial especially since it is harder to medicate it with his DOC Band on.???? He only gets one hour a day band free so I have to remember to treat him at the beginning of his hour so that the cream is dry before the band goes back on.?? Most of his excema is cheeks to ear and forehead.

Troy’s eyes are still grey though a dark grey now.?? The center iris looks like it might be getting a ring of brown but the outside is still quite grey.?? In pictures, they look about as dark as Tori’s black eyes often but I think this is because the grey doesn’t pick up any color so they just look so dark.?? They are beautiful.?? They look especially dark in the pictures above but that is in part because he wasn’t getting much direct light in them from where he was positioned in the house.

He hasn’t had any apnea in quite sometime now so I suspect that he won’t have the monitor too much longer.?? His pediatrician told me he thought Troy would have it for six months and looks like that will be accurate.?? He is still on 1/2 teaspoon of Prevacid every day.?? He is STILL a spitter but it’s better than it used to be (though Jim still hates to hold him without a towel because we get so tired of changing our clothes).?? I was looking for a pair of pants this morning for ME to wear and everything had spit up all over.?? My clothes are going to be ruined.?? Good thing I wear primarily dark colors.

I measured his wrists recently and he and Tori both had 4 1/8 inch wrists (as of 12/6).?? I also measured the thickest part of their calves and Troy’s were 1/8 of an inch larger than Tori’s!?? LOL.

TORI

During this Christmas season, Tori and I had lots of talks about “The Naughty List”.?? For whatever reason, Santa Clause is Coming to Town has been her favorite Christmas jingle so I assume that is what made her think about the list.?? One day at lunch she said “It will be very bad if I am on the Naughty List”.?? I explained to her that the song is pretend.?? First – there is no naughty list and second – Santa is not God and he doesn’t know everything and he can’t see you all the time much less write anything down.?? I don’t like the “Naughty List” concept so I was trying to convince her it didn’t exist.?? (Ty was swift to let her know that he was certain he was NOT on the naughty list).

Her favorite toy for Christmas has been her MP3 player.?? I love the fact that I can hear her singing so well when she is playing it but it gets pretty aggravating to have the lyrics of Baby sung directly in my ear while watching TV.

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“Guess what time the Christmas Tree woked up??? At 8:00 o’clock.”

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“I promise I might…”

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Me to Troy:?? You are a fussy little guy right now.

Tori to Me:?? You have two fussies.?? Your fussies are tired and need to go to sleep in your lap.

Tanner:?? That sounds like Thing 1 and Thing 2 (not to Dr. Seuss)

Me:?? Exactly what I was visualizing Tanner.?? 🙂

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Tori and I have been reading the Complete Tales of Beatrix Potter.?? I am enjoying them but I must admit that Tori has a pretty short attention span in general so she doesn’t like them quite as much as I do.?? She likes to have “Whisper Time” in bed where we both lay there and just talk girl talk.?????? Before Christmas I teasingly asked her what she bought me.?? She said that she bought me a wedding ring that was real sparkly and says “I love Daddy” but that it was in the attic (how convenient huh?).?? I talked about her daddy and his great character and how handsome he is and she says “Ya and when he shaves all the hair off his head he is real fancy.” Jim really enjoyed the retelling of that.

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TY

This month Ty had to be evaluated by a surgeon due to his belly hernia.?? Do you remember when it was like golf ball sized when he was a baby??? I had never seen an umbilical chord hernia get as large as Ty’s did.?? In time, it went down though and now just looks like a rather significant outie.?? Not for long though because in Feb he will be having it repaired.?? When we were at the surgeon’s office, the surgeon asked Ty to walk out in the hallway because he wanted to observe his gait.?? Looking puzzled, the surgeon then asked me to come to the hallway to observe and let him know if the gait Ty was displaying was his usual one.?? I had to laugh when I watched Ty walking like a perfect robot.?? Silly boy.

He also had an OT eval this month.?? I was a bit concerned that the evaluator wasn’t even sure where to start with his handwriting skills because I could tell that she was baffled.?? She ended up referring me to someone else and I am still waiting for that person to contact me.?? Initially she suggested that I stop allowing Ty to type so that he would HAVE to write but I convinced her that option was not viable.?? I can’t put his whole education on hold and not allow him to express in written form just because he can’t handwrite it.?? He has a disability and needs extra assistance and right now the keyboard is it and I am not taking it from him.?? Ty’s fine motor skill delays are pretty significant and I don’t know how much a therapist will be able to help him.?? Hoping…

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Me:?? Wow Tori!?? You had better stop eating all those peppers!?? I can smell your breath from here.

Ty:?? Ya Tori!?? Your making my nose burn!

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Recently I was reflecting upon the Sleeping Beauty story and noticed a beautiful parrallel (at least I thought) to Ty’s story.?? Do you recall in the story how Maleficent (the bad fairy) cast her (mean) wish on Aurora and then left and then Flora, Fauna and Merriweather came in and said that they couldn’t undo what Maleficent had done but Merriweather still had not cast her wish so she was able to soften the blow by causing Aurora to sleep instead of die when she someday touched the spindle?

Prematurity robbed much from Ty.?? God allowed (at least to some degree) natural order to take its course and Ty suffered things I had hoped and prayed he would be spared (like bilateral brain hemorrages).?????? I am not saying that God was powerless to stop it and God did intervene much – but He didn’t allow Ty to be spared everything. ?? However, He DID choose to bless Ty with incredible (and enviable) traits that few in the world possess (to the degree that Ty does).???? He gave Ty the gift of happiness, the gift of contentedness, and the gift of optimism. That is no small gift either.???? I watch the way my son views the world, himself, and his place in it and I realize how magnificent the gift he has been given.?? I often call him my Pollyanna boy.?? He looks on the bright side of everything.?? (I loved that line in Pollyanna where the ladies were gathered after church complaining over the sermon and Pollyanna was challenged to think of ONE good thing about Sundays and she said “Well….we are further away from next Sunday right now then we will ever be”.?? LOL.

Ty’s favorite phrase is “Well it’s a good thing…”???? He often exercises this when something very “not” good has come up and he is trying to balance it.?? I tell him he can’t have candy at Circle K and he says “Well it’s a good thing I got a coke”.?? I tell him that he has to go to bed early he says “Well it’s a good thing that tomorrow I can play Xbox”.?? I tell him he has to clean and he says “Well it’s a good thing that I don’t have to clean Troy’s room.”

The other day he was eating dinner and says “What is THAT on my plate?”.???? Most of us are a little horrified to find something foreign in our food.???? Not Ty.?? He says “Wait!?? It might be cotton candy!”.?? It wasn’t.?? It was a butter wrapper particle.?? Leave it to Ty though to think that JUST MAYBE his very favorite candy MIGHT be the foreign substance that has made its way to his plate (never mind that there was no cotton candy in the house at all).

I am so very grateful that God lavished in love those types of gifts upon my son.?? He is a delight to all who know him because of it.?? What could be better than that?

TANNER

Not too much to say about my big boy because at 10, I try harder to protect his privacy (especially since he is my shy boy).?? I will tell you though that he has been an amazing helper these last six months with baby brother.?? Troy loves loves loves Tanner and Tanner earns it.?? Tanner vigilantly watches Troy and makes sure everyone else does to.?? I sometimes laugh at how often Tanner is making sure that I am meeting all of Troy’s needs.?? When I walked in from grocery shopping last week the first thing Tanner said to me was “Did you say hi to Troy mom?”?????? This Christmas, Tanner got a rifle (for his larger game hunts).?? He is transitioning from the toys to the (much more expensive) big boy stuff.?? Jim is loving that.?? :)???? He is liking bayblades (how ever do you spell that?) and loves MineCraft.?? Actually, thanks to texting on MineCraft, he is typing 25 wpm now with 96% accuracy.?? His goal is 30 wpm by the end of year and I think we will blow that number out of the water by end of year.?? I have been using a keyboarding curriculum for him but he tells me that texing Beau on MineCraft is helping him to get faster.

Whhhheewww…that took awhile to write.?? Thankfully, Troy went down for his nap and let me finish this.???? Wonder what else I can finish before he wakes up????? Believe me…I have a long list of choices.?? :)?? I am tempted though to go back to my reading.?? I have been reading a fantasy series on my Kindle called “The Book of Deacon” by Joseph Lallo.?? I love it!?? If you are a fantasy lover, give it a try.?? The first book was free and the next two are only $2.99.?? Think “Eragon”ish.

 


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