Finallly!

So guess what?  I finally got those Christmas cookies, er I guess I should say New Year's cookies made.   When I asked Paul what kind of Christmas cookie I should make he said, "chocolate chip of course."  Well, chocolate chip cookies don't scream Christmas to me so I made gingersnaps instead.  I used a recipe I hadn't used before and I think it was pretty good.

The other finally is that I am FINALLY going to post a family picture of us.  Yep, that's right.  My gracious co-workers Jeannie & Libby came over and took a photo shoot of our family.  It was pretty funny really.  Alexa didn't want to participate all that well and Parker slept through the whole thing.  So although we got a few where we all were looking at the camera...

 most of them looked something like this...

 

or this...

or this...

Here's what we were all thinking in case it wasn't obvious: 

Sara - "Just keep smiling."

Paul - "Are you serious?"

Alexa - "Get me out of here!"

Parker:  "I really could sleep better if you would quit moving me around so much crazy lady."

Oh well it was fun nonetheless and we did get some good ones of the kids.

And my favorite one of the bunch of my boys:

HAPPY NEW YEARS EVERYONE!

skinny jeans

So Paul and I had respite for Parker the other evening so we decided to go out to dinner (A real date, I know it's crazy, huh?).  Afterwards, we decided to get a cookie from The Cookie Company because well as I've mentioned before sweets are of upmost importance in my diet and well we were close by and just couldn't resist.  For those of you that don't know, the Cookie Company is at the mall.  As we were pulling up all these teenagers were standing outside by the curb in little clusters and I assume they were waiting to be picked up by their mothers who wear "mom-jeans".  They however did not have such a cramp in their style as they were ALL wearing skinny jeans.  Ahhh!  I dislike loathe skinny jeans (for myself anyway).  Other people can definitely pull it off but I think nothing could look worse on me.  Does this make me old?  I'm afraid so.  But in this case I'm OK with that.  I sure hope by the time Alexa is old enough to want to be in the "in" group that something else is in style (I'd even prefer hippie jeans) because I wouldn't even know where to start.

Christmas Confessions

1. Didn't get Christmas cookies made before Christmas (although credit should be given for thinking there would be time to get this accomplished and buying the needed ingredients)

2.  Will undoubtedly have just as much fun with the kids' new toys as they will

3.  Christmas tree was put up in back corner of dining room because effort was not put forth to try and rearrange the living room for a more practical spot (it did get put up just in time for Christmas though)

4. Missed the night nurses terribly and appreciate them very much now

5.  Hates sweet potatoes no matter how much they supposedly taste like dessert

6.  Truly believes that "sweets" are a major food group and is apparently trying to see how many calories one can get just from dessert items 

7. Can't seem to get daughter to bed before 10:30p

8.  Would totally wear pajamas all day, everyday if and when possible

9.  Discovered the joy of on-line shopping

10.  Husband hates the above mentioned contentment from purchasing anything that is not a necessity and makes one feel guilty for doing so

Cuddlebugs

This year family pictures didn't get taken in time for Christmas with all the craziness.  So...one morning after Parker got back home (when my kiddos were still in their PJ's) I decided to snap some pictures and I got some cute enough that they made our Christmas card.  We are getting some family pictures taken this week by some friends of mine so cross your fingers that those turn out...but in the meantime here are my cuddlebugs.  Oh and by the way the blanket in the background was made by grandma Celia.  I'm so very impressed (if only I had the patience for such things).

Gymnastics

Last winter, we enrolled Alexa in swimming lessons and while she loved it, we learned our lesson.  No swimming when it's freezing cold outside (for Mommy and Daddy's sake).  So this year, we tried gymnastics instead and it is was just as big of a hit.

 

I think we'll stick with sports that don't involve water in the winter.

What a smile can do for you

When we found out we were going to have a second baby I was excited to have a new little person in my life.  What I didn't know is that I would have one little person and at least 20 other new persons as well.  Let me see if I can list them:
Pediatrician
Geneticist team
Neurologist
Neuro surgeon
ENT
Pulmonologist
Urologist
Nephrologist
Surgeons
Dieticians
Social workers
Case workers
Aerodigestive specialists
Developmental specialists
Orthopedist
Audiologists
Opthamologist
Plastic surgeons
Speech therapist
Occupational therapist
Physical therapist
Respiratory therapist
In home nurses
Not to mention the dozens of Dr's that oversaw Parker's care or ran tests on him while he was in both St. Elizabeth & Children's Hospitals.
Hmmmm....I'm sure I forgot someone ?

This new life for us is quite an adjustment.  I do think God had been preparing me for this though.  I always enjoyed working with people with special needs and thought it was my calling to be employed somewhere that I could make a difference in people's lives.  My initial major in college was special education (but learned quickly that the school system was too political for me) and I worked for agencies where I got to care for people with disabilities.   It's funny really to think that I used to provide in-home care to people with special needs and one of the boys I worked with had a trach.  Now my child who has a trach is receiving in-home care.  I must say having complete strangers come into my home and care for my child so I can sleep is extremely difficult for me.  I know that I'm not superwoman and I do in fact need sleep.  Without it I realize I would be useless to Parker but also would compromise my relationships with Alexa, Paul, and everyone else I know.  So....we have night nurses.  And, most likely will continue to have night nurses for some time.  And I'm sure I will learn to love them.  It is just going to take time.

Sometimes it's easy to get caught up in all this craziness and wonder what the reason is behind all of this.  But then my little boy gives me a smile like this... 

and it truly makes me put all of that aside and remember how blessed I am to have such a sweet little baby in my life.  He really does make my heart melt and I love him so much!

He amazes me more!

Well, Parker has undergone even more tests and seen even more specialists since my last post.  I do believe we have seen almost every specialist in this hospital (OK, not quite but we're getting close).  He also ended up getting 9 procedures during surgery instead of 4.  I must admit, I was scared to death.  My little boy powered through though and considering all he has undergone in the last couple weeks, I'd say he's a superhero.  In surgery he ended up getting a trach, a g-button, an umbilical hernia repair, an inguinal hernia repair, ear tubes, a "Ladd procedure" (repairing and relocating his bowels), an appendectomy, having a central line placed, and getting a bronchoscopy.  The Dr's joke that it's not everyday that someone gets a surgery that has the same name as them....maybe Parker is related to Dr. William Ladd down the line somewhere...maybe I can research that with all my spare time :o)

Parker is also now off the vent!!  This is huge.  He is now wearing a trach collar which is just like a little plastic mask that fits loosely over his trach to provide him with humidity.  He was getting some supplemental oxygen as well but as of this morning the oxygen has been turned off and he's been doing great without it.  Keep your fingers crossed that we can keep that off!

We have been told it's likely that no one else in the world has Parker's exact chromosomal deletion so we already know he is one of a kind but on a number of occassions we've had many different specialists say something to the effect of, "Gee, I've never seen that before."  The Dr spoke with us yesterday about publishing Parker's case because they have found certain things that some Dr's may not think to look for that could be life saving in other kiddos.  So...this is something we're thinking about.

In other news, I haven't gone crazy yet so that's a plus.  It helps to have such a supportive family.  Our parents have been trading off taking care of Alexa and this is a huge relief not having to schedule people to care for her so I can focus on being here with Parker.  I miss my little girl more than I can imagine and they have brought her up to see me a few times and I cherish that time.  I'm very much looking forward to getting back home and trying to find our new "normal".  It will be quite a transition I'm sure but I'm confident we'll get there.

 

 My little mummy.  This was during his EEG which was normal - showed no signs of seizures!!

The night before Parker's big surgery.