Friday, December 31, 2010


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:


Thursday, December 30, 2010

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.

Sunday, December 26, 2010

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

Sunday, December 19, 2010


This year family pictures didn't get taken in time for Christmas with all the craziness. 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).


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.

Thursday, December 16, 2010

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:
Geneticist team
Neuro surgeon
Social workers
Case workers
Aerodigestive specialists
Developmental specialists
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!

Thursday, December 2, 2010

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. 

Saturday, November 27, 2010

He amazes me!

It has been quite a week for us as most of you know.  I know a lot of you want more details so I'll try to sum it up.  On Friday the 19th, Parker had a weight check at the Dr's office.  I had no idea anything was wrong with him at that point.  On the way home from the Dr., his apnea alarm went off while he was in the car seat.  We weren't sure if this was a true alarm or not because the car seat is such a bad position for him.  Late Friday night and Saturday morning feedings weren't going well and his breathing was more labored than usual.  We decided to take him to the ER Saturday afternoon just to be cautious.  Even though his bloodwork looked good his chest xray showed what looked like pneumonia so he was admitted.  Parker's breathing continued to get worse and finding the right position for him was more and more difficult.  His blood gasses also showed elevated carbon dioxide levels so they transferred us to Children's Hospital in Omaha.

I must say, we have learned way more in a week at Children's than the 8 weeks spent at St. Elizabeths.  It seems we get a new diagnosis everyday but I am grateful he's finally in a place where he is getting the tests and treatments he needs to help best care for him.  I never knew I would be a nurse when I grow up but it looks like I will be afterall.  Since we've been at Children's, Parker has had a sleep study, swallow study, videoscope, x-rays, MRI's, bloodwork up the wazoo, kidney ultrasound, heart echo, and seen the genetics team, ENT, pulmonologist, plastics, surgeons, and had many other specialists consult.  He's currently on a ventilator. It's been a whirlwind and we've learned so much about Parker's 6q deletion and the problems associated with it.  I'm sorry my little guy has to endure all this but he is strong and determined and I feel we have to try to get him the best care and treatment we can.  

There are a lot of different theories as to why Parker went downhill so quickly when we were maintaining quite well at home.  The initial diagnosis of pneumonia has been dismissed.  They tested him for just about everything there is to test for and everything came back negative.  Their best guess is that it was a cold that just turned nasty, he aspirated, or his system just wore out after working so hard (or most likely a combination of all three).

The Dr's have really worked together as a team to make recommendations for Parker.   It seemed like every study that was done showed how signifcant Parker's breathing troubles are.  The sleep study (or nap study where he really didn't sleep well so results were likely even better than they would've been) showed that Parker's breathing was obstructed 60-70 times in 2 1/2 hours.  The video scope showed that Parker has pharyngomalacia where part of his airway completely collapses during breathing.  Although the specialists considered all of the options, it looked like a trach was the best way to go.  We needed the results of the MRI to confirm and it showed that there really wasn't any other option.  The downside to the MRI was that he had to be put under general anesthesia.  They decided to intubate due to his obstructed airway and he wasn't able to successfully be extubated so he remains on the vent.  They will keep him on the vent until Monday when he gets his surgery and then hopefully he'll be able to come off it somewhat quickly after.

The swallow study showed that Parker aspirates.  They tried thickening the liquid and he still aspirated and he aspirated severely.  So, they said we should no longer feed him orally.  I must say out of everything we've heard (and we've heard a lot), this was the hardest for me to accept.  We worked so hard to get Parker to the point where he could eat everything orally and he really enjoys eating so this was tough.  But, I don't want to cause more problems down the road so this is what we'll have to do for now.  Hopefully, there will be a time in the near future that he can eat by mouth again.  We have the option of keeping a NG tube in or having a G button put in.  After considering both, we have decided it will be better for Parker and for us to do a G-tube so he will have that placed during his surgery on Monday as well.  And while they're at it, they are putting tubes in his ears and repairing his umbilical hernia.   This sounds like a lot to me but we feel it's better to do it all at once rather than have to do another surgery in the near future.   

There is a lot of other information we have found out but we're waiting on more testing and consults from specialists before we can fully grasp everything.  We have learned that he is missing 92 genes on one of his 6th chromosomes.  This sounds crazy but we were initially told it was a few hundred so this was a relief for us to hear.    The more we find out, the more our little Parker amazes me.  Or how amazing our God is and the power of prayer.  Thank you all for keeping Parker and us in your prayers, I know it has gotten us this far and will be what continues to get us through!

Sunday, November 7, 2010

So many reasons to smile

Parker has been smiling a lot lately and why not?  He is...
  • Breathing better (we're hoping to wean his 02 down a bit this coming week)
  • Eating better (he is now taking in 600+ cc's per day)
  • Gaining weight like a champ (he was 9 pounds 12 ounces on Friday)
  • Appears to be hearing more (his hearing test showed moderate hearing loss in both ears but with possible fluid and his noisy breathing, the tests may have been skewed.  He seems to be startling to more sounds than he was before so we're hopeful it's better than that.)
  • Visually tracking things (faces, his mobile, bright colored objects),
  • Getting stronger (he is getting more and more control of his head)
  • Has been making cooing sounds (which I absolutely love)!!  
Go Parker!!!!!

Guess who's 2?

I can hardly believe my little girl is 2!  It just seems crazy.  Everyone tells me to enjoy it when they're little because they grow up so fast and I'm beginning to realize just how true that is.  It's amazing how much she has grown and changed.  She surprises every day with how smart she is and she's quite funny too!  These days Alexa's favorite things are:  doing puzzles, listening and dancing to music, talking and learning new words, going shopping, cooking with Mommy, reading books, learning new things (colors, counting, words), giving hugs and kisses, Elmo, story time at the library, spending time with her grandparents, helping with Parker, going to the park and anything outside.  Alexa also started gymnastics lessons this weekend which I think will be lots of fun!  She is such a good girl and I am so blessed to have her as my daughter!   

This year we had a very small birthday party with the grandparents and uncle John.  We are still trying to limit visitors to help Parker stay healthy so maybe next year we'll have big bash again.  We had Alexa's favorite:  pizza, grapes, and Elmo cake.  Could it get any better?  

Just because she's 2 doesn't mean she needs to use silverware you know...

 Wouldn't you want a pink vacuum for your 2nd birthday? 

 Even Parker got in on the festivities!

Fall fun

 From exploring the pumpkin patch with uncle John & Mommy,

to painting the pumpkin she picked out,

playing in the leaves,

going for evening walks,
 (Parker wasn't a fan of the bumps but we tried)

having picnics in the park,

dressing up Parker for Halloween,

wearing not 1 but 2 costumes,

and then going trick or treating for the first time...

I'd say Alexa has had a pretty fun fall so far!

Sunday, October 10, 2010

My Boys

Baby Cracker

My little Parker is 9 weeks old!!  Wow!!! The big news since my last post about him is that he is now at home.  He came home on October 1st which was 1 day short of 8 weeks in the NICU.  I won't lie, I was scared to death and this first week has been a roller coaster but I think we're doing OK.  He did come home on oxygen and an heart/apnea monitor but he didn't have to come home on a feeding pump because he is now taking all of his food orally by bottle.  In all honesty, this is quite a struggle but we have managed to get his daily requirement down him and he is gaining weight.  I'm hopeful that this will become easier and less time consuming than it currently is and I know we will get there eventually.  He is such a joy and I really like his awake moments.  Alexa is doing pretty well also which was a big concern of mine.  She likes to know where Parker is and if he is going "nite nite" and makes sure to tell me when "baby's crying".  It's pretty cute.  We're trying to get her to pronounce his name a little differently because it sounds like "baby cracker" but I have to admit I think this is cute too.

We have a lot of appointments coming up and I have yet to feel comfortable doing the whole routine on my own.  With the oxygen and monitor and a baby who needs to stay positioned correctly, taking him places is quite a trick.  I guess I should get used to it though.  We have home health care nursing and are seeing a pediatrician, audiologist, opthamologist, geneticist, urologist, nephrologist, occupational therapist, physical therapist, ENT, and are getting early development services set up.  Ahhhhh!!! 

The other night I left Paul home with the kids and I left to get a prescription filled and get some ice cream.  It felt so strange to have some "alone" time even if it was to run errands for 20 minutes.  I realized that in order for us to stay sane, Paul and I both need to find ways to have some "me" time so I'm going to be working on making that possible.

It's been easy for me to feel overwhelmed lately but Annie from my MOPS group sent me a bible verse tonight that was perfect:  "I can do all things through Christ who strengthens me."  Philippians 4:13.  Thanks Annie, this is exactly what I needed!

more pics to come...

Sunday, October 3, 2010

Catching up with Alexa

Now that it's fall, I thought I should catch up on posting some pictures from the summer.  Here's some of what Alexa was up to:

 Strawberry picking with Grandma Celia,

looking at the clouds after summer storms,

spending countless hours at the park,

running through the sprinklers,

painting her new room purple, 

walking in Daddy's shoes,

helping Grandpa Donn in the garden,

visiting Great Grandpa and Grandma Metcalf in Kansas

spending time with her cousins, Foster & Loghen,

being asked (without success) to smile for family photos,

bike riding with Daddy ,

getting together with Mommy's friends,

going to the zoo,

dancing, dancing, and more dancing,

 splashing at the Children's Museum,

and welcoming her new baby brother, Parker, into the family!