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Archive for the ‘Phinehas’ Category

(You can see other Everyday Life posts here.  If you wanna.)

Day #30: Big Fat Goose Egg

Phinehas is a fairly clumsy kid, but he is getting better.  He just trips alot.  We asked the peditrician about it, but he wasn’t concerned.  It doesn’t seem to be a balance thing.  His eye sight is great.  He watched him walk and all looked good.  His shoes fit well.  He’s just not quite the world’s best walker.  Doesn’t seem to bother him.  He falls down.  He gets up.

Well, last night, he fell down.  Not while he was walking, but I had gotten out the vacuum cleaner and was going to go plug it in, when he tried to use it to vacuum.  It must’ve knocked him off balance because he fell over backwards and fell down the 3 steps to our tile-floor entryway.  And let out a big cry.  I held him for a minute or so, then looked him over.  BIG, HUGE, GIGANTIC goose egg on his forehead.

He’s okay though.  No signs of anything serious.  We called the nurse’s line to be sure and they didn’t have any concerns and told us what to look for.  They did say that it could take up to a week for the swelling to go down.  Luckily, we don’t have any family pictures planned.

Ignore the dirty face - that's just typical boy messiness!

Ignore the dirty face – that’s just typical boy messiness!

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(You can see other Everyday Life posts here.  If you wanna.)

Day #27: Sleeping Under The Bed

So…I thought Phinehas was doing pretty well with the whole sleeping-in-a-big-boy-bed.  Til tonight when I found him sleeping under the big boy bed.

He was sleeping hard!  I was able to drag him out, pick him up and put him back into bed without him ever waking up.  Poor guy.

SleepingUnderTheBed

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(You can see other Everyday Life posts here.  If you wanna.)

Day #24: Big Boy Bed

Phinehas has officially climbed out of the crib.  Onto a big boy bed.  Here he is all tucked in for his first nap in it.

bigboybed

I went in later to see how he ended up faring.  I expected to see him sleeping on the floor, but nope, he was in the bed.  Just “upside down”.

bigboybed_after

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18 months old!

Phinehas is 18 months old!  We did his check up at the pediatrician yesterday and here are his stats:

Height: 33 inches (something like 70th percentile)

Weight: 23.5 inches (somewhere around 19th percentile)

They measured his head circumference, but I don’t remember what the number was (and I can’t find the little sheet that the nurses write it down on), but it was 90% percentile.  He’s always ran a bigger head than his other numbers and all the more so since his skull surgery.  Tis okay.

While his weight hasn’t gone drastically up, he seems so heavy and big to me.  I think it’s because now it’s easy to compare him back to the size of a newborn.  Man, what a difference a year and a half makes!

Some of his favorite things:

  • Planes.  We’ll be inside and he’ll hear a plane, stop, point to the ceiling and say something.  Not quite recognizable as ‘plane’, but he says something.
  • Fruit.  All kinds…except he seems to have fallen out of love with grapes.  Used to love ‘em.  But not so much anymore.
  • Climbing.  Kid is all over the place!  My sister calls him ‘tenacious’ because he doesn’t seem to accept no when he doesn’t want to, is into everything and on top of everything.  The other day I caught him in the baby swing. He had somehow pulled himself up into it and was sitting on top of it.  But then he couldn’t figure out how to get out.
  • Books.  Still likes to ‘read’, but doesn’t sit still for an entire book very often.  Usually, we get 1/2 way through, then he goes and picks out a different book.
  • Milk.  He just can’t get enough of it.  He acts like I’m torturing him if I offer water instead.
  • Re-arranging cabinets. Maybe this is just because he sees me do it, but he’s been taking all the items out of my pantry and cupboards and moving them to different places.  I’ve been doing alot of that as we get settled into our new place, so maybe he doesn’t really have a thing for canned tomatoes, but likes to imitate.  Oh well — keeps him busy and out of trouble!

TheMen

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I only have the 1 child (so far, you know, living outside my body), so I don’t know how typical he is.  But he goes practically non-stop.  From almost the moment he wakes up in the morning until it’s time for bed.  He stops for 2 things: a car ride and meals.  I think that’s typical of a 16-month-old, but who knows?  Typical or not, it’s him.

So, when he does have a “I’m going to go ahead and sit still” moment, we take advantage of it!  It’s time to fill up mom or dad’s Cuddle Cup (that’s what we call it).  Last night, Jeff put Phinehas to bed and I looked into the bedroom to see the two of them just sitting there in the chair.  Phinehas had his sippy cup of milk, but wasn’t really drinking it.  They were just sitting there, Phinehas on Jeff’s lap.  Phinehas was ‘talking’ and gave hugs occasionally.  Every few seconds, he’d take a drink, but he wasn’t really interested in it.  I just smiled and kept on walking.

I asked Jeff later, “Were you filling your cuddle cup?”

Jeff’s answer: “Yup.  The boy doesn’t stay still long enough for me to fill it often enough.  Gotta take advantage of those moments!”

Agreed!  This is the good life.

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We had Phinehas’ 15-month check up this week.  I like recording his statistics, but I’m not sure the best way to do it.  For his first year, I created a scrapbook and had a page for each month, but it wasn’t meant to be done for the rest of his life.  I need to transition out of a “baby book” mentality and into a “documenting our family” mentality, but I’m not sure what format I want to do that in.  Digital scrapbook?  Actual paper-and-pen scrapbook?  Anyway….

  • He’s 67th percentile for height – 31.5 inches.
  • He’s 18th percentile for weight – 22 pounds.
  • He’s 91st percentile for head circumference – kind of a jump from the 70s where he’s been, but that’s due to the surgery he just had. His head is totally fine, but the surgery has intentionally made his head bigger to allow for brain growth and where the head had fused too soon.
  • He’s meeting all the major milestones.  I kind of think he should be able to say more words, but the pediatrician isn’t worried about it.  He looks for 15-month boys to say just 3-5 words, which is just about what he’s doing.

I had friends ask today about how his head looks after surgery, so here’s a few pictures.  They aren’t the cutest pictures of him, but they show his incision fairly well.  It really looks great (I think).  I can see why they have a craniofacial plastic surgery do the incision work.  His hair is still really blonde, but it’s growing nicely and covers it (fairly) well.

It doesn’t bother him – best we can tell.  He doesn’t ever seem to be in pain because of it.  No grabbing of the head nor do I get the sense that he’s having headaches.  He’s just a normal little boy with a scar on his head!

He is so fun, sometimes.  He’s at that age where you can really see what he’s learning.  I can now say “Where are your shoes?” and he’ll go get them.  Or his blankie (which he’s suddenly developed a fondness for).  He loves, loves, loves to be outside…so much so that he usually pitches a fit when it’s time to go inside.  Just in the last week, he’s mastered climbing onto chairs.  Last week, he couldn’t do that.  It’s just fun to see a skill develop that wasn’t there before.  It’s a great age!

3MonthsSurgery

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As I mentioned, the plan is to move Phinehas to a new room sometime this fall before the new baby arrives.  He’ll still be in a crib (thanks to my sister, yet again, for another hand-me-down.  My sister = lifesaver!).

Originally, I had visions of a red/white/gray-ish striped room, but I ending up going in a different direction.  See, I had some leftover yellow-ish paint (a quart costing $2.00 because it was in the Oops bin at Home Depot – LOVE that!), so instead of a lot of stripes, I just did one big stripe at the top as a border.

I wanted something else, something more visually interesting in the room though, so I installed some ‘trim’ as a “middle stripe”.  It’s at the same height as the top of his window and bedroom door.

To make it even more interesting, I made the longest wall into a shelf.  Nothing fancy, but it can hold pictures or knick knacks.  Nothing too heavy until I figure out a better way to secure it.

All of this is thanks to my father-in-law for tools.  My Christmas present last year was an air compressor and a nail gun.  (How cool of a gift is that!?!)  Then he drove down last weekend to let me borrow his miter saw (I think that’s what it is called).  Since the bedroom had just been emptied of pretty much everything, it was time to put my plan into action!

It took me just about the whole week to finish, but that’s because I did so in 30 minute increments – around nap and bed times.

Total Cost:

  • $2 on the “oops” yellow-ish paint.
  • $0 on the white paint, rollers, nail gun nails – I already had those.
  • $7 on the “shelf”
  • $11.50 on the “trim”
  • $20.50 TOTAL — not bad at all and, I think, well worth it!

Basic Instructions:

  • Paint the border.  I wanted the border to be about 12 inches showing, so I painted 13 inches down.  I knew my “trim” would cover up where the yellow met the gray, so I didn’t have to worry about any ‘bleeding’ under my taped line.  I didn’t need a super crisp line.
  • Buy the lumber.  The “trim” around the room is just 1x4s.  The “shelf” is just a 1×6 board.  Home Depot called it “common wood” (aka: nothing fancy.)
  • Paint the lumber.  So much easier to paint them when you can lay them flat on the basement floor than after they’re already hung on the wall.  I learned that lesson from my back entryway!
  • Measure & nail up the trim, piece by piece.  I started by one of the windows, used a level to make sure it was straight and worked my way around the room.  It took longer to set up the saw, air compressor & nail gun than it did to actually hang the trim!
  • Touch up the paint.  You’ll want to touch up some of the corners, where boards meet and where the nails are.  I didn’t need to use any paintable caulk, but that’s always a possibility.

Notes:

  • When you buy the lumber, you’ll want to know not just how many total inches you need, but if you have a couple of long walls, you don’t want to have to use lots of odds & ends to piece it together.  So, for those walls, you’ll want to have pieces as long as you can.  You might still need to use 2 pieces to fit a wall, but better 2 pieces than 8!
  • Little boys love to play with the big machines that appear in your living room.  Be careful with that!
  • The light in that room is horrible.  I have dreams of installing a better light and ceiling fan in there.
  • We have doors that go almost all the way to the ceiling which presented some decision.  Paint a yellow stripe on there too?  Leave it all gray?  What about the fact that I can’t put white trim on the doors as it will affect the way they open?  In the end, I decided not to paint yellow at the top.

Some pictures:

Phinehas Room Collage

1. The room before.

2 & 3. Phinehas playing with the saw.  Don’t worry – there were 4 adults in the room and the power was off.

4. The closet before.  A dumping ground of things that need to be sorted.

5. The walls after.

6. Phinehas playing on the bed and you can see the shelf above him.

7. A different view of the room

8. The closet after – I also installed some shelving in there, which was another cheap and easy project.

9. The closet doors.  I think it looks okay to be all gray and not have the yellow/white stripes.

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For Phinehas’ “Baby Book”, I wanted to do a special scrapbook album for his first year.  I do it digitally and order it when done.  Well, it’s done and I’ve just hit Submit on the printing of it, so I should have it in a few days!

Now, I’m not the best scrapbooker.  I’m not the best graphic designer.  But I’ll trade “memories documented well enough” instead of waiting for my skills to be perfect.

Know what makes it so easy? PicMonkey.com.  I’ve raved about it before, but seriously, it’s one of the greatest things ever.  It makes collages so super easy to put together.  Just upload pictures and bang!  you’ve got a collage!

And I get my books printed through winkflash.com.  Every so often, they have a “Flat Rate” special – basically, you can order up to 100 page book for the price of 20 pages.  So I just wait for one of those to come along.  While I wait, I do a few pages, upload them and start my scrapbook project.  When I’m done, I wait.  When they have the special, I order it.  I just ordered an 8×8 book with 68 pages for $23.94 (including shipping & handling) instead of the $70+ it would normally be.  LOVE IT!

I wish there was an easy way to show you the end result, but I can’t think of a way.  And really, it would probably bore you anyway.  So, here’s just a few of the pages (put into a slide show):

**Note: I’m not an affiliate of any of these places – don’t get paid a dime to tell you how cool I think they are.  I just think they’re cool and that they make my life easier.

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Surgery: Photo Gallery

Here are pictures from the day of surgery (before and after the surgery):

SurgeryDaySmall

1. A side profile shot

2. Front shot (the owie on his nose isn’t related to surgery, but in learning how to keep up with faster cousins)

3. Shot above the ears – you can make out a bulge where his brain was already starting to grow out.

4.  In the pre-op waiting room.

5. In the play center waiting for surgery.

6. “Playing” with the masks to see if he had a preference

7. After surgery as we got to the PICU.

8. Cuddling with mom in the PICU.

9. Sleeping.  No swelling that I could see.  No bruising.

These are pictures from the first & second days after surgery:

Day2PostOpSmall

1. Being held by dad.

2. Being rocked by dad.  Most of the time in the PICU, he didn’t wear anything but a diaper.

3. Being held by mom.  Still no real swelling that we could see.

4. With the bandages off.  Kind of bloody since we weren’t able to wash his head yet.  This is when we started to see some swelling start.

5. The incision, pre-cleaning.

6. The incision again.

7. Being held by mom on day 2.  Still very sleepy.

8. Being held by dad.

9. On the 2nd day after surgery, starting to feel better.  I tried to make him a little “fort” inside his hospital crib.  He liked it a little bit.

These are days after being home.  From Day 3 after surgery to almost 2 weeks post-op:

Day3PostOp Small

1. Side shot of the incision on day 3 after surgery.

2. Day 3 after surgery.

3. Day 3 after surgery.

4. Day 4 after surgery.  This is when his swelling was the worst.  His face looks puffy, but not nearly as bad as I had feared.

5. Day 5 after surgery.

6. Day 5 after surgery

7. Almost 2 weeks after surgery, from the front.  The “owie” under his eye isn’t connected to surgery – just being a little boy.

8. Almost 2 weeks after surgery.

9. Almost 2 weeks after surgery, doing his new habit – the pouty face.  Not sure why he does it.  He does it when he’s happy, when he’s sad.  When he’s walking around.  When he’s just sitting. It’s his new thing, I guess.

Here are pictures from almost 3-months post-op:

3MonthsSurgery

 

Here is 5-months post-op.  

Scar is hardly visible anymore since it’s faded and his hair has really grown in.

18_months

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See this page for all of the posts related to our journey with craniosyntosis.

We’re Home!

Once we got home, things got much better.  Except for his swelling.  The doctors and nurses had warned that the swelling should be the worst on the day that he got his bandages off.  Instead, it was a couple of days later that we really noticed the swelling.  But you know what?  It wasn’t bad.  He kind of looked like he had a bad facelift and weird cheek implants.  It was gone though within a couple of days and never got so bad that his eyes swelled shut (which is a possibility).

He wasn’t napping like normal.  I think he took 4-5 naps the first 2 days home.  Each was about 45 – 60 minutes.

He didn’t sleep through the night (and still isn’t a week later) like he had before surgery.  In the beginning, I think it was pain related as he’d wake up 2-3 times a night, about every 4-5 hours.  We’d give him the pain meds and a bottle.  Even then, it took a 30-45 minutes of cuddling before he went back to sleep.  I debated waking him up to give him pain meds, but in the end, I thought that’d be more disruptive to him than him waking up on his own.  I’m not sure if I made the right decision there.

A week later (as I write this) and he’s still waking up once at night, but I don’t think it’s because of pain anymore.  He just takes a bottle, some cuddles, then he’s ready for bed again.  I think his sleep patterns are still a little off.

After a couple of days, I took him off the prescription pain meds.  He never broke out in hives or anything to give a clear indication that he was allergic, but he itched his nose constantly.  He’d find any surface that he could and rubbed his nose against it.  Since the doctors (and the pharmacist) said to transition him off of it when I thought he was ready, we did.  It went well!  We actually gave him Children’s Ibuprofen and it seemed to take away his pain just as well as the heavy duty stuff, without the nose rubbing and without making him so sleepy.

On day 6 home, I stopped pain meds completely.  He was going longer and longer between doses and it seemed like I was giving him the medicine just because the clock said to.  If he would’ve shown signs of pain, I certainly would have given him another dose.  But he was fine.  I might have been able to stop it sooner than day 6, but with a 1-year-old, it’s so hard to tell.  It’s such a guessing game at that age.

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