Thursday, March 29, 2012

More Girl and then some cheerful stuff

Thank you, all of you, for your beautiful words about Girl.  Your facebook comments, blog comments, text messages and phone calls have been kind and comforting.

My grandmother really was an amazing woman.  Like I said, her parents died when she was very young.  She and her siblings raised each other.  She quit school in the 8th grade so that she could work to support her family.  When my uncle (her son) got his PhD,  her gift to him was to get her GED.  She could have gotten 14 PhDs though- she was that smart.  She wrote her own autobiography and had it published when she was 80.  I re-read it every couple of years.  I will have to wait a while before I read it again though.  It will be too sad.  There are many, many stories I could tell about her.  It's overwhelming.  Instead, I'll share some pictures.

When I was pregnant with Spencer we flew to Pennsylvania and spent about a week visiting family.  We had been talking about doing it for about a decade and both recognized that it wouldn't be possible once I became a mother.  This is her niece, my dad's cousin.
This is her friend, and the maid of honor from her wedding, Clara.  Their parents were on the same boat when they immigrated from Poland and Clara and Girl knew each other their entire lives.
This is her baby brother.  He was 1 when their mother died.  He was 9 years younger than her and they were the last 2 siblings.  I think the first sibling (a brother) died in the 1940's.  Girl always thought that he would outlive her, but he passed away more than 2 years ago.

With Spencer on his 2nd birthday.
Christmas 2008
Spencer's 1st birthday
Christmas 2007
Christmas Eve 2009- It was one of those funny family holiday things that you have to experience to really understand the humor.  We had given Nick a children's book and he read it outloud while holding the pipe and wearing the Santa hat.  Then everybody took turns.  Girl recited 'Twas the Night Before Christmas.  With the hat.  And the pipe.

Let's move on to some more cheerful fare.

Spencer is finally back in school.  His two and a half week spring break felt like it lasted about two months.  He's only in school for seven and a half hours a week, but we all need that break.

  Yesterday, Elliott napped for two hours, an hour of that while Spencer was at school.  It was HEAVEN.  I decided that Spencer needed a fun snack to come home to.

I made him apple, peanut butter, marshmallow smiles.
Don't let his droopy eye fool you (temporary bell's palsy?), he was delighted.
After Elliott's nap, when our house reached 80 degrees and I broke down and turned the AC on for the first time this year, Elliott wore a t-shirt and diaper combo for the first time.
I just love a baby in a t-shirt and diaper.
It's irresistible.

Wednesday, March 28, 2012


My grandmother (who we all called Girl) died this morning.  She was 94.  She fell and broke her hip three days after Elliott was born and had been in the hospital/rehab/an adult care home since December 19th.  She was miserable...miserable that she wasn't at home and miserable that she had lost all of her independence.  Until that day she had lived on her own and was still driving (in a very limited capacity).

Girl's mother died when she was 10 and her father died when she was 13.  There were 7 kids (5 boys and 2 girls) and after their parents died they raised themselves/each other.  She outlived all 6 of her siblings.  I like to think that there is a huge celebration in heaven today with that family reunited.

And of course, she is back together with my grandfather.  I hope there is dancing.

I am glad that she is no longer in pain and miserable, but damn am I going to miss her. She had two sons and I was her only granddaughter and I like to think we had an extra special bond. I'm fairly certain that she bought 99% of my clothing from ages 12 to 20. We had so much fun on our frequent shopping trips.

She also paid for a big chunk of my graduate schooling and my second round of braces. And Spencer already has a pretty decent college fund because of her.

Spencer is old enough to remember Girl.  I think that as long as we keep talking about her he will even remember specific memories.  What I am most sad about, right now,  is that Elliott will never know her.  He "met" her twice and she got to hold him once.  I am so glad we made the effort, amongst all his health problems, to get to Tucson to do that.
I'm also really glad that I pushed and pushed and pushed to get these 4 generation pictures taken in 2010.

We love you Girl.
We will miss you.
I hope there is Polish dancing and Polish food in heaven.
You should wait a little while before you come back to haunt my dad and push him off of bar stools like you always said you would.

Monday, March 26, 2012

Another Nutrition/Liver Update

Every couple of months I get a coupon from shutterfly for a free 8 x 8 book.  I always swear that I'm going to use it.  It seems like I'm throwing $30 away to not claim it.  But then I wait until the night that the coupon expires and there's no way to put together a 20 page book in such limited time.  Then I always swear I'm going to make a book and have it saved and ready the next time I get another coupon.  I never do.  It's a vicious cycle. 

My latest coupon expires in 1 hour and 1 minute.  I tried.  I really tried to put together a book from our Disneyland trip last January, but I put too many pictures on each page and had a bunch of pages left at the end.  I threw in the towel 15 minutes ago because I'm being realistic that I can't finish it before the coupon expires.  Oh well.  It gives me time to blog.

We saw Dr. Miloh and the nutritionist last Thursday.  Elliott had increased his weight gain to 25 grams a day.  Dr. Miloh was very pleased.  The nutritionist was shocked.  I think she had already planned her speech telling me I absolutely had to put Elliott on a bottle.  Instead, there was no more talk about me pumping at all.  We also all agreed that he probably would have gained even more if he hadn't been sick, because illness increases your metabolism and calorie needs.

The plan now is to keep using the supplementer with 1.5 ounces of pregestimil per nursing.  We're also going to add 1 tsp of Duocal to each 4.5 ounces of formula.  Duocal is a high calorie, powder nutritional supplement ideal for medical conditions where extra calories are required for catch-up growth (per the duocal website). Elliott is eating about 12-13 ounces of formula every 24 hours, so that's about 3 teaspoons of duocal, which equals an extra 45 calories a day. 

When the nutritionist was explaining how much to give him she said that I needed to use a measuring teaspoon, like the kind you cook with, not the kind you eat with.  Then she asked if I had such a thing in the house.  I wanted to slap her.  I just really, really don't like her and her attitude. 

Elliott was laying on the bed 2 days ago and Spencer said that he was getting bigger.  I notice it too.  His face is filling in a little and his legs and arms are ever so slightly chubbier.  He is fitting nicely in 3 month clothes, which is amazing since his adjusted age is just 9 weeks and he's had cholestasis basically for his whole life.  I tell ya, this liver disease is nothing to fool around with.  Your liver does everything in the human body.  I'd go as far as to say that it's more important than your heart.  All a heart does is pump.  The liver regulates everything else.

The liver:
  • synthesizes amino acids
  •  metabolizes carbohydrates
  •  stores glycogen, iron, copper and vitamins A, D, E and B12
  • produces and secretes bile which helps the body absorb and digest lipids, fats and fat-soluble vitamins
  • breaks down or neutralizes naturally produced substances that are harmful to the body
  • removes harmful foreign substances and toxins from the body by metabolizing and filtering these substances from the blood
I hope that everybody is current on their hepatitis vaccines and that you are being careful with alcohol and medications, both prescpription and not, (and it goes without saying: no illegal drugs) because you do not want to mess around with hepatic health.  And that is something that you could, and should, needlepoint on a pillow.

Dr. Miloh also confirmed that all of Elliott's blood and urine results in his mini metabolic panel were normal.  He has no indicators of any metabolic disease.  We are so relieved.  The plan is that we are going to continue to put weight on Elliott and go back in 2 weeks for a follow up.  We'll do more lab work a few days before to check on his bilirubin level and GGT.  I am so happy that the bilirubin is going down, but I am constantly worried about that GGT.  Normal, if you will remember, is in the 100's and Elliott's was last in the 1500's.  We also see the epileptologist next week.  The whole seizure issue has taken a back seat to the liver issues for now, but I'm hoping we can start figuring out the seizures soon.  Stay tuned.

Some fun pictures to end this post before I head to bed.

Daddy and his boys
Spencer and Elliott "playing" together
(side note: the shirt that Spencer is wearing is a 5T and the shorts are a 4T.  When did that kid get so big?)
(second side note: he still comfortably fits into several pairs of 2T shorts, so I guess it really depends on the brand.)
Daddy and his boys again
Elliott, this morning, looking curious.
1 hour later in his second outfit of the day after his diaper leaked and he peed all over me and my favorite nursing pillow.
One more fun story.  Elliott was screaming his head off when I was in the shower this morning.  I got out and quietly said his name.  He stopped crying, opened his eyes, looked at me, totally recognized me and started smiling.  It was awesome!  Then I got another 5 minutes out of him to let me comb my hair, get dressed and brush my teeth.  Yes!  Progress!

Sunday, March 25, 2012

Easter Prep

Elliott is doing a better job napping by himself during the day.  I nurse him to sleep, then hold and rock him until he is deeply asleep.  Then I can put him down.  The other day he slept for almost 2 hours by himself.  Yesterday he needed some rocking every 20-30 minutes.  That's still better than Spencer, who took his very first nap by himself at age 2 years- 1 month.

This morning was momentous because it was the first time since he was a real newborn (like less than 2 weeks old) that Elliott just fell asleep by himself without us holding and rocking him.  I actually marked it down in his baby book because, by comparison, the first time Spencer ever put himself to sleep he was 2 years- 4 months old.  Michael had Elliott in the rock n play in the bathroom while he took a shower and got ready.  The sound of the shower and exhaust fan just knocked him out.  We left him in the bathroom for 30 minutes to nap.  Ha!

Anyway, with all this independent napping Spencer and I have more opportunities for a little one on one time.  We've been doing lots of arts and crafts, reading and hide n go seek.

On Thursday we made an Easter Bunny Garland.
We did the backs with stickers and cotton ball tails.

The colors are not exactly what I would have picked, but Spencer was dang proud once we hung the whole thing up.
On Friday we made Easter Footprint Chicks.  Michael helped with Elliott after he got home from work.

We got out all the Easter decorations yesterday and when I opened everything it reminded me that Easter is actually in 2 weeks and I don't have a basket for Elliott yet.  Spencer was 6 months old for his first Easter and I did not get him a basket or give him one gosh, darn thing for that matter, but we're giving Elliott stuff this year more for Spencer's sake. Holidays are important to him and he is very concerned that Elliott actually participate in holidays.  He gets that from me I think. 

This is Spencer's basket that we got when he was 18 months old.  Every year we use the same one and fill it with little non-candy gifts.  He gets enough candy hidden around the house from the Easter Bunny.
I thought he was so big and grown up that year.
Early this morning, like 4:00 am, when I was up nursing Elliott, I was sitting in the dark thinking that it was too bad I couldn't buy a matching basket to Spencer's, but in green.  It's been 3 years since I bought it, I couldn't even remember where I got it and I doubted I would be able to find a new one.

I went to Michael's Arts and Crafts for stuff unrelated to Easter today.  And wouldn't you know it, I found an almost exact match to Spencer's basket in green. It was the only one they had.  It's almost like I conjured it by imagining it.  Maybe I'm a witch.  Spencer's basket is a little wider and Elliott's is a little deeper, but they definitely match.
I just couldn't be more pleased.

Friday, March 23, 2012

Jet Pack

Like I said in a previous post, Spencer started wearing this collapsible toy storage container around the house a few weeks ago.  He said it was his jet pack and he needed it to blast off to Mars.  I admired his creativity, but thought we could do a little better.
First, I bought two plastic 2 liter bottles.  Then I bought some plastic paint primer, like this:
I peeled the labels off the bottles, primed them (the primer I bought was grey), let them dry over night and then painted them with silver craft paint.  I used 2 coats.
For the fire I bought 3 bags of gift shred (copper, gold and red) from Hobby Lobby.
I laid out a piece of packing tape and then put individual pieces of the gift shred on the tape.  It sounds laborious, but I did 4 of these in about 15 minutes.
Then I rolled them up and secured them with another piece of packing tape.
I stuck two in each bottle and used liquid nails to glue them in place.
Once that was all done I took a diaper box and cut one side out of it.
I primed (I just used the same stuff I used on the plastic bottles) and painted that silver too.
Then I glued the bottles (again, using liquid nails) to the cardboard.

The last step was to use duct tape to make straps.
I think it's pretty awesome myself.
Once Spencer accepted the fact that real fire was not actually coming out of the bottom and got over his disapointment, he thought it was pretty awesome too.  It's become part of his daily uniform.

P.S. April, I was not kidding.  If you promise you will ride your motorcycle with one of these on your back, I will totally make one in your size.  You have to wear the mohawk helmet too.