Happy Halloween!

Isaac drew us some very scary and cool Halloween decorations and tonight we went out trick-or-treating.  It was an unseasonably warm day (it got up to 70 degrees), and a very mild night.  I went out without even a jacket, and the boys were comfortable in their costumes.  Isaac was a Ninja Turtle (I’m not sure which one).  Jonny was Tigger for the third year in a row!  Thank goodness the costume was very big for him the first year because we haven’t been able to talk him into wearing anything else.  I guess we’re really getting our money’s worth on that one.  Ben was a very cute teddy bear. 

 

Ben had a wonderful time.  I wore him for the very first time in his brand new front pack carrier, and he LOVED it.  He smiled and laughed aloud the entire time we were out!  It was good exercise for Mommy too, and helps to justify some of the candy I ate tonight!

Jack o’ Lanterns and Screaming Cookies

Yesterday we finally got to carve those pumpkins.  We cleared all the junk off the dining room table, spread some newspaper on it and got to work.  Isaac was very enthusiastic to pick his pattern (a flaming skull) but it soon became clear that he thought I was going to do all the work.  With a little prodding, he actually did some of it himself and enjoyed it.

 

Isaac’s got done first, then he and Jonny ran off to play upstairs, leaving the rest of the carving to Mom and Dad! Here are the fruits of our labors.  Mine is the spider and Mark’s is the ghostly cauldron:

 

 Ben sat in his swing in the dining room and watched not-so-happily (actually he was content for all but a couple minutes):

 

Tonight we made Screaming Cookies (we got the recipe off the Food Network website) and the big boys “helped” which means that they were constantly in the way but had a good time.  The cookies are pretty tasty.  They are rich and I can’t eat more than one or two at a time which is probably a good thing.  We’re all ready for Halloween!  I hope someone hands out toothbrushes to our kids as treats!

Shopping Expedition

Today we were quite busy.  My dear husband let me sleep in late, and by the time I woke up it was time to go shopping.  I took Jonny and Ben with me first to the grocery store, and then to the WalMart Supercenter (yes, even though we live in the country there are 2 of these  within 20 mins of our house!)  Jonny wasn’t at all anxious to go to Wal-Mart after we had already been to one store, but was easily won over when I mentioned we were going to buy Halloween candy.

 

Ben was great: he stayed in his carseat and watched the shelves – never went to sleep at all on our outing.  Can’t say the same for Jonny:

Mark took Isaac to a Halloween party thown by his soccer coach, and then came home and installed this lovely ceiling fan in the playroom.  Isaac got some cool vampire teeth.

 

We meant to finally carve pumpkins today but never got around to it, mostly because I was out shopping too late.  I bought Chinese takeout for dinner as a peace offering, but it was too spicy for the kids so they ended up eating Mac& Cheese.   Oh well.

New Pump!

 

The medical supply company dropped off another pump for us today.  Let’s hope this one works!

Today I was off work so I actually got my hair done.  Bless those stylists for offering same-day appointments.   Usually I don’t have enough presence of mind to actually call ahead. 

I also took my clothes to the cleaners and asked the seamstress there if she could do some alterations on Ben’s clothes.  He really likes his “little arm” but now that the weather is colder, it’s not as accessible because of the long sleeves he has to wear.  We would like to shorten all the right sleeves of his shirts so he can have as much use out of that arm as possible.  When we try to roll up the sleeves, he can’t move the arm very much because of the bulk of the fabric.  I’d do it myself, but I’m not that good with a sewing machine, and besides, I don’t have the time!  She said that she could, for $3.50 per sleeve.  I suppose that’s not too bad.

Tonight we went for dinner and a movie (“Over the Hedge”) at the house of some very dear friends.  They have twin girls Isaac’s age.  Isaac, Jonny and the girls entertained each other, running all over the house, screaming, etc.  Ben watched them quite contentedly for most of the evening.  We all had a very good time and the food was delicious.

Pump Malfunction

During the day we use a syringe pump for Ben’s bolus feeds; he gets around 65 cc over 45 mins.  It’s just easier that way since he gets a relatively small volume at a time.  At night, however, he has a continuous feed of about 10 oz that runs over 8 hours.  For the nighttime feeds we use a Zevex Enteralite pump which we love: 

 

Tonight, however, we set up the pump and guess what?  For the first time since we had the pump we got an error message.  The pump just won’t work at all, no matter how many times we turn it off and on again.  We called the medical supply company, and there’s not much they can do tonight, but they will come first thing in the morning and bring us a new pump.  So that means that tonight we will have to do bolus feeds every 3 hours!  :-(  It’s a good thing I’m off work tomorrow.

Here’s Mark downstairs right now giving Ben his first installment of tonight’s feeds:

Soup (Click “More” for recipe)

I forgot to mention that my husband Mark is an awesome stay-at-home Dad.  He should probably be the one blogging instead of me.  He does a great job with the kids, including taking care of Ben with all of his challenges.

Mark and I usually share the meal-preparation duties, but tonight Mark made us a special treat.  He made a half black bean-half butternut squash soup which was delicious!  We also made some sauteed chicken breast sandwiches to go with it.  Overall a very good dinner to come home to on a cold night.

   

Six Month Well Child Visit

Ben had his 6 month checkup today, even though he technically is not 6 months old for a few more days.   He is still 9lbs 4oz, so he hasn’t really gained any weight at all this month.  It’s probably because of the surgery – we really had to go slow on his feeds for a couple of weeks.  We are only now increasing his feeds from what they were at the end of September. 

He didn’t like being examined and he REALLY didn’t like the shots.  He got, among other things, his flu shot and his first in a series of Synagis shots.  The Synagis is supposed to give him some protection against the RSV this winter, and is given to babies who are premature, have low birthweight, or other risk factors for severe RSV disease.  Our health insurance covers it which is a good thing; our pediatrician says it runs over $1000 per shot! 

He does have global developmental delays, and I would estimate that overall he is at about the level of a 6 week old “normal” baby.  His personality is just starting to develop.  He has just started with belly laughs over the last few days, usually in response to tickling or watching his brothers’ antics.

The MIC-KEY is actually leaking less already - I used a non-stick dressing coated with a little of the Nystatin, and it seems to do a good job of sealing off any gaps – for the last 24 hours we have not needed to change his clothes because they were damp.

On a totally unrelated note: I did end up giving Isaac his antibiotics.  I know from previous experience this year that his ear infections tend not to clear up on their own.

Leaky MIC-KEY

Over the last week we’ve been noticing more leakage around Ben’s MIC-KEY (G-tube) site.  The skin around it is also red and irritated-looking, and has a “yeasty” appearance to it.  Mark called the surgery office and they have called in some Nystatin cream (an antifungal) for him.  We’ll see how that goes.  We’ve started using gauze to try to absorb some of the leakage, especially overnight.

Mark has been able to run Ben’s feeds in over 47 mins instead of the usual 60 mins today!  We will try increasing both the rate and the amount of tonight’s feed as well. 

Isaac has an ear infection, but he seems to be feeling better and I only just picked up the antibiotic tonight.  I therefore didn’t start him on it.  Hopefully I am not exercising bad judgement and he won’t wake up screaming in pain in the middle of the night.  Jonny fell asleep at 6:30 pm after a late night last night and an early morning today.  Mark is telling me to leave him be.  That’s OK as long as he knows that if Jonny wakes up at 2 am wanting to play, he’s the one who’s getting up with him! 

Pumpkin Patch

 

Yesterday we went to the local pumpkin patch to get some big pumpkins for carving.  The weather was beautiful: sunny and in the 60’s with just a little breeze.    Ben wasn’t too keen on having sun or wind in his face.  I think he needs a vacation in Trinidad!

We found some nice specimens as you can see.  We hope to carve them later today or perhaps tomorrow.

…and here are the Brothers.

This is Isaac.  He is 6 years old.  He goes to full-day kindergarten.  He likes school for the most part, but he keeps saying that 180 days is too much to have to go to school.  He really enjoys riding the bus (I guess the novelty hasn’t worn off yet).  He plays soccer (his team is called the “Atomic Grapes” because they have purple uniforms).  He also goes to gymnastics once a week.  He enjoys video games, drawing, coloring and reading about animals.

This is Jonathan.  He is 3 years old.  He was my baby up until this summer, but once Ben was born, my, did he ever grow up fast!   All at once he became an outgoing, sociable, potty-trained big boy.  He goes to preschool 2 mornings a week.  He enjoys playing with trains, super hero action figures, and just about anything his big brother Isaac is playing with.  He also does a pretty decent job of coloring for a 3 year old!  Jonny loves to eat and always seems to be saying, “I’m hungry!” 

Both boys love their baby brother Ben.  They are ALWAYS bugging him!  Sometimes he likes it, sometimes not.  Either way, I am glad that Ben has two wonderful older brothers to look out for him.