Jingle Bells

Xmas in MA

The latest Pinterest project all over the web are these Grinch Kabobs.  I made them for Seamus' daycare party and they came out pretty good. 

We spent Christmas at home.  It was a quiet and lovely day.  The kids were super excited that Santa came. 

Seamus was a riot opening gifts.  He would give a very loud, "OOOoooooooo.....WOW!" as he opened gifts.  He even helped Eve open hers. 

It was a joyful and lovely day.  We are blessed.

Xmas in NJ

A few weeks ago, we went to NJ for an early Christmas.  Jim had the weekend off and made a super quick trip to my parents.  My brother and his family were able to come up from VA so it was a whirlwind of fun. 

We were able to see my best friend and her family.  Here's Jack:

Here's Maddie:

After lunch, Dave, Trina, and the kids came. 

Giovanni (5) and Alex (10)

Bella (3)

mic-key valve

Last week, the valve on the j port blew.  If one of the valves has to blow, the j is the best.  When not it use, it can be plugged and still allow access to the g port.  In other words, the leaking can be stopped.  I just have to be careful when removing the feeding tube so that her skin stays dry.  If the g valve blows, I'll be on the horn with the GI and asking him to look into the AMT g jet. 

I will say that her skin integrity is much improved since we've gotten the low profile button.  I still keep strips of silver alginate dressing at the stoma to keep it clean and dry, but it's no longer bleeding or raised. 

Holiday festivities

This weekend is a busy one. Today, the kids and I went to a gingerbread decorating event at the local preschool.  Jim was working, but I had lots of help thanks to Colleen, Duffy, Thomas, Judge, and Jen.  The kids had an absolute blast!  Sometimes I am overwhelmed by the love and support from our community. 

In the afternoon, we went downtown for the reindog parade.  It's such a fun event.  Seamus wore his beard hat!!  He was so distracted by the activity that he kept it on.  He got lots of laughs as we walked in the parade. 

Josie, on the other hand, did not keep her saddle on.  It kept flopping over so we just ended up taking it off.  Her antlers were a beard at one point, too.

While we were waiting to start the parade, we saw Santa!!!  He came over to say hello.  The kids were thrilled.  He was very sweet.  His oldest "elf" is in a wheelchair. 

It was a super fun day.  Tomorrow we get our Christmas tree.  This is going to be a very fun Christmas season.  I think Seamus' excitement will be very contagious. 

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.