busy but good week

This past week was a busy one.  We celebrated Jim's birthday.  It looks like Seamus and Josie are the most excited. 

On Thursday, Eve had her gj tube replaced.  The procedure went very very well.  They gave her double the dose (10ml) of sedative that they did last time and I think they hit the sweet spot.  I brought her Boots doll will us and he went into the room during the procedure.  I was told that one of the nurses put on a puppet show during the replacement and that Eve cooed the entire time.  I explained that when she coos, she is making her happy noise.  The only thing that was a little strange is that her heart rate was pretty high (150 bpm) even when she was given the sedative.  I think it was probably because of anxiety because her normal heart rate is closer to 100.

Anyhow, she now has the Mic-key button and so far so good.  It's day 2 and the valves are working great.  Here's a picture of the new button:

Last night, we had a visit from some of our very favorite people.  Kate and her mom came for a quick visit.  Sweet Kate is a member of our family.  She used to take care of Eve before she moved out West.  We miss her dearly and are always so happy when she's in the area and has time to stop by.   It's wonderful to catch up with friends and feel as though it's been just moments since you last saw them.  Kate fits into our household seamlessly.  She had Eve out of her chair within 5 minutes of seeing her.  Although Eve is a little less expressive than she used to be, we know she was just thrilled to see Kate.  I also know I was thrilled. 

September photos

In September, we had photos taken by Carrie Snyder.  We are so thrilled with the results.  Seamus didn't stand still for more than a fraction of a second, but fortunately Carrie is quick.

Seamus

Seamus has been talking up a storm.  He struggles with pronunciation, but that makes for some very funny moments. The other night he noticed his nipples.  He asked what they were and I told him.  He looked at me and said, "Nit nulls?"  He noticed them again the next morning when I changed his shirt.  Nitnulls became Nittles.  So funny. 

He's a very "helpful" child.  He saw me baking for book club and he chanted, "Me help?"  over and over.

He loves dessert and will whisper, "Eye cream?" after every meal.  I think he's hoping the answer will change one morning and he can have ice cream at breakfast.  Fat chance. 

He likes to play "music" on his toy instruments.  Last night we had a dance party after dinner.  He ran and grabbed the mini keyboard and played along to the radio.  The funniest part is that he squeezes his eyes shut while he is rocking out.

Halloween

As you can see, Eve got a haircut.  It seems to be a once a year thing.  Basically, her hair gets too long to manage.  It gets too hard to wash in her shower chair, and it has to be braided to stay out of her mouth when she hangs her head down.   She loved the trip to the beauty salon. 

Eve was supposed to have her gj tube switched on Halloween.  The hospital called on Monday to say that they canceled our appointment.  The tube was back-ordered and there was no news, so they were canceling (and not rescheduling) the appointment.  After a minor freak out, I got more info.  The GI nurse will call the hospital early this week to find out if there is more info from the company about when the tube will be available.  She will then make a new appointment in the next few weeks.  If it is for the mic-key, great.  If the mic-key is still back-ordered, they will put in the old style.  She is due for a new tube, so we can't wait too long.  So, I chose to look on the bright side - we didn't need to rush home to trick or treat.  The irony?  It was raining on Halloween night, so we ended up staying in anyhow.  We dressed up, carved a pumpkin, and handed out candy to our ONE trick or treater.

Here are the kids costumes.  Eve was a butterfly.  Seamus was supposed to be a lumberjack, but he refused to wear the bearded hat.  This is literally the only picture I got of him in costume. 

Seamus ended up wearing a ghoul mask from the costume box.  (Look familiar, Dave????)

Jim's been working two Saturdays for every one he has off.  Yesterday was a rare treat because we all went out to do errands together and stopped to have lunch at Panera.  Seamus was sooo happy and was very very good. 

Evie looks bored, but I think she enjoyed looking at all the people.  It was a nice change of scenery. 

Today, Seamus spent a chilly morning outside with Jim helping to rake leaves.  He may not have contributed much other than silliness.  But, he had a ball. 

 Seamus is a total riot.  He's lots of fun and really shows his personality.  Lately he's been enjoying organizing things.  I found him organizing the dominoes like this the other day:

The week before Halloween, Eve's school has a "Words are Wonderful" parade, in which the kids dress up as characters from books or favorite words. Here's a picture of Eve as Pippi Longstocking.  Her one-on-one at school said she felt like she was pushing a celebrity.  I told her I often feel like that when I push her about town.  :)

All is well

Backyard view

All is well here in the Berkshires.  It's the middle of October and the days are beautiful.  The kids are doing great.  Seamus is talking more and more.  He is still hard to understand, but is getting much better at enunciating.  He's also a total riot.  So funny.  The other day, he and I were laying on the bed.  We pretended to be asleep when Jim came into the room.  Jim asked, "Are you sleeping?" and Seamus said, "Yes, Daddy!!"  He drinks from a regular cup at the dinner table (but I only pour in an inch or so of milk at a time) and does pretty well with it.  He's a great eater and doesn't turn his nose up at much.  We're working on the potty.  He asks for it and will pull his pants down, but rarely is successful.  We don't make a big deal about it, or ask him to sit on it.  I will wait a few month before we actually work on training him.  Right now, we are just getting him comfortable with the idea.  He gets very excited when he is successful.  He's a sweet boy.  He likes to give hugs.  He accidentally bumped into another child at daycare and started signing sorry right away.  Then he said "sorry" and hugged the child (unprompted).  I'm pretty proud of him. 

Eve is also doing very well.  Night and day from a year ago.  She is healthy and happy.  She is loving school (2nd grade).  However, we are having a  bit of trouble with her stoma.  She just keeps getting granulation tissue and bleeding.  We've tried several applications of silver nitrate and also have been using calcium alginate and stoma adhesive to keep the stoma dry.  I finally brought in the wound care nurse last week.  It looks like there really is nothing we can do to keep the stoma from leaking, so we just need to do our best to keep it dry.  I think this last round of silver nitrate may have done the trick.  The granuloma has shrunk way down and is nearly invisible.  Hopefully it stays that way.  She gets her gj switched out at the end of the month.   

Josie, on the other hand, did not have a good week recently.  Neither did our wallet.  She must have eaten something that threw her GI system into a panic.  Three days of cleaning out her system from both ends, a crazy expensive vet bill, a new rug (after discovering our spot bot is broken), and she's back to normal. 

Jim is working hard - he has been put on the very very early shift.  It means lots of overtime, but he is totally dragging by the end of the week.  I'm enjoying the fall semester very much.  I have a great group of students, and my new building and office are awesome. 

Life is good.

Doo doo doo