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.