The Greer Clan

My favorite time...

2011-09-07T21:26:00.002-05:00

If you could hear me say it, you would hear the sarcasm. Anyways, it's another start to a preschool year for us and time for us to send our 'letter to the parents' regarding Sam. We were asked last year because there was parent who...had some concerns about our enrollment and the thought was information may put them at ease. I'm not really sure whatever happened with that but either way we were asked to send another letter because a student this time was 'upset'.

Long drawn out way to say "Happy Craniofacial Acceptance Month!". Seriously-no sarcasm here. September really is Craniofacial Acceptance Month.

So #1-if you are a cranio family in the DFW area I hope you are planning on attending the picnic this Saturday and we look forward seeing you there! More info at www.ccakids.com.

#2...in an effort to promote craniofacial acceptance I have pasted an article I wrote for something else that addresses talking to your young children about differences. It was also attached this year to my 'meet Sam' letter. Enjoy!

As a parent of a child with Treacher Collins Syndrome, we get a lot of unexpected thrown at us and families quickly learn to roll with the punches and navigate what seems like impossible situations. However, there is one situation we often find ourselves in that relies on other families to be responsible and navigate their own potentially awkward social situations. I am baffled time and time again when I see parents ‘dodging the questions’.

We have a son born with Treacher Collins Syndrome, a genetic syndrome that is characterized by severe facial deformities. Nearly every time we are out in the community we are approached by another child with questions like: “What happened to him?”, “Why does he look that way?”, or “What’s wrong with him?” When the questions are coming from a child they are almost always coming from a good place; they are simply curious. I am happy to answer those questions and help the child understand that everyone has differences. Nonetheless, the reaction is typically a very embarrassed parent rushing over to distract the child or encourage them to play somewhere else. I understand their embarrassment, but they should also understand I know my child looks different.

So how do you bring the subject up? In my profession they are called “teachable moments”. So take advantage of a learning opportunity. Of course, the difficult part is you don’t know when the opportunity is coming so you need to be prepared. When your child asks the question, “Why does he look that way?” go ahead and answer as best you can by focusing on the differences and then how we are all different. Highlight differences your child has always known in his or her life that may not be as severe- different races, different eye or hair color, glasses, gender. If you have other, more prominent differences in your life focus on those as well-anyone in a wheelchair, a physical handicap, or mental handicap. You probably want to also touch on similarities to shift the focus from ‘how are we different?’ to ‘how are we alike?”.

“He does look different from you, but he probably likes French fries like you do, or has brown hair like you do.”

If accepting diversity is top priority in your family, I suggest assessing the situation and if the family seems open to a conversation, feel free to start one. Only once has a mother approached me with, “my daughter has a couple of questions about your son-do you mind answering them?” Of course I didn’t. Parents of children with different needs can be in various stages of accepting the difference, but you can feel safe that if they are out in the community that they have come to terms with it on some level and are in a good place. We are all striving for our kids to live as normal of a life as possible and being accepted by our communities is a big part. By ignoring the questions our kids ask we are teaching them it is not okay: it is not okay to ask questions and it is not okay to explore the possibilities. Early childhood literature tells us time and time again, young children learn from experiences so it is our goal to make them as meaningful as possible.

I love my trach

2011-09-03T15:14:00.011-05:00

It has been 9 days.

9 days since we sat down in that little, bitty room by the OR's to talk about Sam's airway. 9 days since we were reminded of his very difficult airway and the fact it will always be complicated. 9 days since we were told there are not a lot of people that can work on Sam-just a few at the largest Children's hospital in our metroplex. 9 days since we decided to leave the trach in...even if only for emergencies.

I love our physician and I love our trach.

It started a normal morning. Boys up between 7-7:30 playing away. Breakfast of sausage, fruit, and waffles served around 8:30. Coffee a little late this morning and poured around 9am that corresponds to a TV show started at 9. Paul was reading through some material about the boys' school starting next week and I started work on a grocery list. Boys took their place on the couch with toys in hand.

A few days ago we had gotten down a marble maze that had been given to us (maybe last Christmas?). Anyways, all of sudden Paul jumps (maybe 9:10?) to alert me Sam has swallowed the marble. Lucky for us, LUCKY FOR US, we have a trach so we can immediately take off his cap to give him an open airway. He gasps, but seems okay. We think he has swallowed it so I grab the phone to see if we need to let is pass or go in and have it checked out. As I am waiting on the phone Paul alerts me he can barely see the marble-way past palate repair, at the top of his esophagus. That is when we start to move. We don't know whether it can do down, and would love it to come up but know we are going to need help. We arrive at Cook's around 9:30 (engaging in numerous traffic violations along the way).

He sounds clear, no labored breathing so we had remained pretty calm up to this point but as we are getting closer to Cook's I am trying to decipher in my head what to say to get this handled as quickly as possible without everyone freaking out. I know I have to say it's a complete airway obstruction, which is top of the list as far as emergencies are concerned, but I have been in that packed room, in the emergency situation, and while it may be impressive-it is no fun when it is your child. In fact, the last time we were in the room with an airway obstruction it resulted in an emergency tracheostomy. So we know the severity...and we know the reaction.

So we run in, abandon the car in the ER turn around (because they actually do have people that will take care of it-just leave your keys in the car) and have to relay the words "complete airway obstruction". That's when I start to lose it because I remember the course of events that follows. I scribble here and there-nurse confirms that blue ball in the back of the throat and off we go. What has probably now been 5 minutes maybe, we are in a room (with about 10 others), relaying history, listing meds, requesting specialities and specialists, yelling for child life because Jack is with us, and the ER physician reassures his breathing is normal, reassures to all of the other people in the room and we quickly get to a place where everyone understands the situation which immediately calms me down because I see the "freaking out" in all of their faces and it is not helping me stay calm.

So there we are, with normal breathing and this big, blue marble stuck in Sam's esophagus. We decide it's too big to be swallowed and try some very unpleasant attempts with the forceps, but as he gets more upset his muscles tighten around it. Plus, his palate repair is blocking it a little.
We talk out some options, exhaust the ones that don't require sedation and then start down that path.

We need to wait a little since his breathing is stable and he ate breakfast. We are going to try a local sedation but could very likely end up back in the OR. Time to call for back up for Jack and start the waiting. At 11:30 we can try a little sedative, a dental tool to keep the mouth open, then forceps again.

And there you have it.

WE LOVE OUR TRACH and can be thankful for it for the days to come.

10.1 & 10.2

2011-08-25T15:01:00.008-05:00

There is always a plan...the plan is always to adapt to the situation and keep on truckin'.

To relay the mornings activities, I have to go back a few days. Last Friday we finally took Sam to the dentist. I had definitely been avoiding it on some level knowing that we were going to have some issues, but with a surgery on the schedule thought it was best to bite the bullet in case anything needed to be done under sedation. Wise decision.

So, it was a little worse than expected and we discovered (after 4 adults holding him down) that....

1. He had 6 cavities (A, J, K, & T; then see #2).

2. He also has some tooth gemination going on in his 2 front teeth. As I have come to understand, it is when two teeth develop from one tooth bud...resulting in extra teeth. (awesome since we don't have enough room for the normal amount). There was significant decay between the teeth (and decay into the pulp) so we were given a very poor prognosis of saving these. Yes-his 2 front teeth.

3. Finally, the x-rays showed some pretty "odd" permanent teeth and there is question whether we will even let them come in due to deformities. Basically, we were told to prepare for a regular schedule of distracting teeth for the next decade.

So, this morning we thought the plan was...go in for dental work + laryngoscopy & bronchoscopy. We were fairly certain they were going to pull Sam's front teeth and trach, but actually came home with 2 front teeth & trach.

Right off the bat, ENT tells us because of the signifcant dental work she is not authorizing decanulation for today due to swelling issues, bleeding, drainage, etc. Best case scenario we come back next week and do it then...then we get the reminder that nothing is certain.

Our ENT is highly qualified and we respect her opinion and are confident in her abilities. She happens to be (hands down) the most conservative member of our team. We have always thought this was smart since her main responsibility is airway. So when she came in after the scopes to tell us she wasn't going to authorize decanulation and all of the reasons (as diasppointing as it is) we trust our planning in picking the right physicians and listen to her expertise. She is always impressed with all Sam has accomplished and how healthy he stays and doesn't doubt we could remove the trach and be pretty safe. The concern arises if Sam ever got sick. Since airway & nose are so small for Sam to begin with, small respiratory infections or congestion can get out of control very quickly for us and if we remove our "backup" airway we put him in a very difficult position. There is a diagnosis of 'difficult airway' that Children's gives to about 100 of the kids they see...and as a whole they see 1000's. She explained the criteria is very strict to keep that list as short as possible because only a handful of people within the system are allowed to work on those kiddos due to the expertise required to even get in to the airway and we are still on the list. As long as we remain on the list we will continue with the trach.

"You all have worked to hard to get where you are for a bad cold to result in devastating consquences". We can certainly understand that.

The good news is we do not require another jaw distraction or any other surgery to make the area bigger (it would not address the area that is too small). So, hopefully with time and some growth we can move off of the list and on with decanulation. She was as disappointed as we were but we are all on the same page and in agreement. We will try again next year and hope that Sam's airway has grown enough to get us off of that list.

Dental went a little different than expected in that we filled 8 cavities and came back with our 2 front teeth. He did 4 silver crowns in the back, 4 caps, and 2 root canals. There is a good chance the front tooth (where the root canals were performed) will still fall out but we will see how it goes.

So instead of staying overnight in the original plan we are home. Sam is snoozing away and Jack has been promised a Star Wars marathon to allow us time to digest...keep on truckin!

Children's Medical Center

2011-08-14T20:22:00.005-05:00

So...I have had several (unanswered) questions regarding the new gig for me, so inevitably it is time to address. I wasn't trying to keep it a secret, or be incognito...I was definitely a little nervous, unsure if I was really going to do it or it was really going to happen. But alas, I have re-entered the working world and so far-really couldn't be happier with the outcome.

I had been looking for awhile...long before my notice was given and really wasn't haven't much luck. I didn't like what was out there, nothing was part-time, and we will just ignore the black cloud of our economy to focus on the facts as they are relevant to me (even though the poor economy=cuts in school districts=several behavior analysts looking elsewhere as the behavior specialists positions are cut within districts=a lot more behavior analysts in the job market=you better be good if you want the job because for once there is a little competition for the 'good' jobs in behavior analysis). So I applied a little bit, interviewed a little bit, liked nothing and then applied for a position that I was blatantly over-qualified for. Why? Because, I truly believe in the purpose of the program, love the work you are able to do with it, and saw potential for growth.

So I fought a little, they fought a little and....I am the new behavior analyst for Children's Medical Center Autism Intensive Outpatient program. I am joining the other (1) behavior analyst there who is actually a buddy from graduate school. It is a program with one of my greatest passions as it relates to autism intervention...parent training. I tried several times to really get an exclusive parent training program going at the center but for whatever reason it never really took hold and this is essentially the same program. Plus, billing from a hospital setting and the added services we can bundle it is really just a great little program.

So with my addition, growth is now feasible for the program (which I obviously love). We are trying to get 'typical' ABA codes billed PLUS...wait for it...offering services to inpatient kiddos with autism (or any behavior disorder) to help their stay and procedures, etc. This I find really interesting; particularly, given our personal history. It is a chore all the same and we have our work cut out for us.

So there it is in a nutshell. The best part is it's kind of 'under the radar' as far as services at CMC which is fine by me. Because for me that equals, ridiculously reasonable case loads, time for yoga at lunch, time for research, time for all kinds of things that I just used to dream about being able to accomplish.

The drawback (and it's a big one) is it's full time; Monday-Friday. We had decided to keep the boys at their current school and hire a nanny which so far has worked really well. Just hard to not see them as much so rest assured....I am not blogging, I am not facebooking because I am enjoying my greatly reduced time with Thing 1 and Thing 2 (who also happen to be working really well too).

I guess the other issue is it's in Dallas...and yes, I consider it the 'bad' side of the metroplex. HOWEVER, the TRE that picks up downtown FW will drop you off at the CMC so I have zero complaints of now gaining 45 minutes of quiet time to read or what not on the way to and from work. It has been my haven and something I have now learned is an absolute necessity for my sanity. I get to decompress my day and be ready to go with those Greer boys as soon as I walk in the door. So after a few weeks of the train I don't think I can actually put it in the 'con' category.

So all and all-so far so good! I don't like to post much about work on the blog so that is probably the rest you will hear from me about it...hope it suffices!

Get your recipes ready!

2011-08-07T16:18:00.002-05:00

Okay all you people who e-mailed me and said you were going to enter...the deadline is quickly approaching!

Even though we have been quite the slackers on blog postings in our household, we have not been slackers on the recipe challenge. We have several contenders...a delicious pad thai, a noteable noodle recipe, and several recipes off of the Jamie (Oliver) at Home series which are super yummy and one of our new favorite shows. I also made a spicy peanut noodle recipe which was not exactly a "repeater" for me and Paul...neither one of us are huge peanut sauce people BUT our kids both loved it. Totally makes sense since it is basically peanut butter noodles. Thought it was worth a mention for the little ones.

And now, it's hatch chile season at our market so we have several more recipes to squeeze in before the final wrap up...so time to start getting them in! And by the way, I totally accept drink recipes too!

Best of luck!

Dog Days of Summer

2011-08-05T15:40:00.002-05:00

I told Carrie that I would write the next blog post, that was about a month ago. I was going to wait until we had a day where the high temp was less than 100 degrees, but it's been 35 days straight and there is at least another 10 forecasted so I guess Mother Nature is more stubborn than I am.

So what's been going on?

-Sam's latest surgery was a complete success. His eyelids are now better functioning and better looking. I promise to post some photos soon.

-Carrie started her new gig and is enjoying her new professional life.

-Did I mention that it's been hot? We really haven't been able to do much outdoors and we are all starting to get a little cabin fever.

-Jack had a fun "squirt gun" birthday party at his grandparents house in Tulsa last weekend and is celebrating this weekend as well.

-Carrie went out and bought some running shoes and has been getting up at 5am to go running before catching the train to work. I guess she didn't have enough going on.

Long story short, everybody is doing well and we will try to get back to posting on a more regular basis. The big thing on the horizon (other than the start of the TCU football season in 28 days) is Sam's decannulation on August 25th. It's a big day for him and us. I can promise that there will be posts dedicated exclusively to this event so stay tuned.

Storm Trooper

2011-07-07T18:28:00.006-05:00

He is indeed a trooper...a Storm Trooper.

I try not to complain too terribly much about hospital stays, but after our last one I was really not interested in staying overnight unless absolutely necessary. The plan was to send us home unless there were any complications and we were out the door by noon-home by 1pm. I can't say whether it's because we are home or whether it was just the surgery in general but Sam is doing phenomenally well.

This picture is from the recovery room in the hospital where he is very tuned into some Penguins on TV. He almost immediately was saying he was hungry and wanting to eat.

True to our surgery ritual we picked up Chipotle for dinner and Sam was all over it ready to eat and sitting at his table, chowing down.

We have had a little oozing (as expected) but I tried to take a closer pic so you can see. There are stitches below his lower lid & above his upper lid. It is unreal the difference it makes and he looks so good. Our swelling should peak at about 36 hours, but I can really tell what a difference it has made.

Good deal and done!

2011-07-07T09:27:00.002-05:00

Just spoke with the surgeon and we are done and in the wake up & clean up phase. They did some work on the deep tissue using some collagen to add support to the lids. He is hoping it is enough to not have to re-do but time will tell. No skin used from anywhere else though. One more under the belt and getting ready to meet him in recovery.

9.1

2011-07-07T08:27:00.003-05:00

Lower lid reconstruction got underway at 8:10 am. It's a little different for us in the fact Jack is with us today due to his turn with the GI bug so providing a very welcomed distraction.

Our hope for the surgery is he has enough skin to reconstruct both lower lids, but since his right eye is so severe this is a very high likelihood we will either
1-have to allow the skin to stretch a little and do this procedure again a little later or
2-he will take some skin from the top of his collar bone (typically taken from behind the ear, but since we will eventually have reconstruction there as well not as good of an option for us)

This should take about 2 hours...

Happy 3rd Birthday!

2011-07-04T08:09:00.003-05:00

Happy 3rd Birthday Sam!

It was pretty low key for the day. The favorite present was opened in the morning before SuperDad headed to work and "cake" and presents were done around dinnertime.

Sam doesn't care for any sweets so coming up with a cake this year was proving to be a little tricky. From the inside out his involved hot dogs, sausage, a ring of pepperoni's, and finally a ring of bacon strips. Technically, you would just call it a meat platter but with the candle in the middle I will qualify it as a cake.

For his party this year we kept it small. I read something a long time ago that suggested you invite the number of friends to your party that you are turning so we took Sam +3 little boys to the new Cars movie. And while not a complete success for all involved, our boys had a blast. SuperDad and I missed most of the movie being seated the opposite direction of the screen but it seemed entertaining enough.

Happy Birthday Sammers!

Rescheduled 7/07

2011-06-30T10:00:00.002-05:00

Thanks goodness!

I was getting a little crazy because if we couldn't find a time in the next couple of weeks our final surgery in August would have to be postponed and if it was too late we would have missed the decannulation opportunity (most doc's won't pull it out in fall/winter). So we are good to go!

:) :) :)

Surgery 6/28-CANCELLED

2011-06-27T19:53:00.003-05:00

Ugh.

So much ugh.

Sam is having a little GI virus which did not get him approved for surgery tomorrow. Rescheduling in process.

Sam's birth story

2011-06-15T15:38:00.008-05:00

I feel like every mom of a special needs child has a birth or diagnosis story. I jotted this down relatively quickly after we came home with Sam as writing is a therapeutic tool for me and I didn't want to forget. We have never shared ours on here but I thought it was fitting on the eve of his birthday.

6/16/2008, 8:12 am and she finally walks in.

Please tell me I’m having this baby today, please tell me that. I was several days past my due date, attempting a V-BAC delivery with #2 so no help allowed.

(Dr. OB) “Since we can’t give you anything to start or progress your labor I am going to try to poke the tiniest hole that encourages your water to break and get it going.”

Thank God.

“Sorry, he is still just too high. I’m recommending another c-section.”

And in that moment, I knew. I knew with the confidence that I had test results backing up my thoughts. I knew something was wrong and it hit me like a Mack Truck.

Do I tell Paul who is radiating with excitement? Surely, I’m crazy. Surely, I am overreacting. No one else has said anything, Dr. OB is perfectly calm. I have to be overreacting. I can’t spoil his joy.

“Give us 20 minutes and we will take you in. Dad, go ahead and get in your scrubs.”

I kissed Paul goodbye and was wheeled away for the spinal tap and to start my second c-section. Then, I was alone. Not in the physical sense since I was in an OR and surgery was minutes away, but I was alone and something was definitely wrong.

“Time out: Mom, age 30, 41 weeks pregnant, Dr. OB performing a c-section. Allergies: strawberries.”

There is so much talking, so many people, it is so bright. I just want it to be over. I can barely breathe and am shaking uncontrollably; I cannot stop the tears from pouring out of me. They keep giving me more drugs because of the shaking and this is all wrong.

Finally, Paul and Dr. OB have arrived.

(Dr. OB) “Here we go! Are we ready to meet that baby?”

I am ready for this to be over. I have to be overreacting and I am praying I am crazy. I just need hear the baby cry. Then I know it will be okay.

“And it’s a boy!”

I don’t even care-I just need to hear that baby cry. Cry baby cry.

“What’s the name?”

(Paul), “John Samuel, we are going to call him Sam!”

I am going to scream-I need to hear the baby cry. Why am I not hearing him cry?

And there it was…The best cry I have ever heard. At that moment I took one, deep breath. In those few seconds, I was relieved. We have a boy, I thanked God, and I smiled…and then all the relief went out the window.

“Mom, Dad we have some issues. He has a cleft palate and a very small jaw. He also has some ear deformities. Dad come see him.”

What does that mean? A cleft lip? The room is now packed and they are taking him away. But I heard him cry. He has to be okay.

(Paul) “He is okay. He is having some difficulty breathing but so far organs appear healthy; he just…looks different.”

What does that mean? He looks different?

(Dr. OB) “He has a cleft palate and a really small jaw. His ears are deformed. Sam is being sent to the NICU for observation and a team will evaluate him so we make sure he has everything he needs. I’m going to start sewing you up and we will get more information.”

I hadn't spoken, I couldn’t think. I HATE drugs and I wanted them out of my system. I need to focus and understand what is going on and I’m in a haze. I have no idea what everyone has said or what it means. Where is Paul? Did he go with Sam?

“Sam is doing great right now and I’m going to have them wheel your bed from the OR into the NICU so you can see him. We think we know what it is but are waiting for the geneticist to come down before we discuss.”

I am overwhelmed. I am quiet. I don’t know what is going on. As they wheeled my bed into the NICU, I could see him lying there, peacefully. So beautiful and sleeping soundly. What was everyone so worried about? I barely got to touch him when I was interrupted…

“I’m sorry you can’t stay-we are taking him next door to run some tests. Do you have family waiting in your room? Do you want me to get rid of them?”

Yes and yes. As we were wheeled back to our room, our OB told us Sam had been born with a rare genetic disorder called Treacher Collins syndrome. The geneticist confirmed it. So there we were: Paul and I in our room, our newborn baby in the NICU, and our family ushered out somewhere else with who knows what information.

Then, we cried. Neither one of us had heard of TCS, but it was evident it was serious and we were sad. Sad this was happening to us, to Sam. Sad. I don’t know how long we cried, but then Paul ended it.

“He is our son and we will love him with all our hearts no matter what. We are capable of this journey and will give him the best. This is the last time we will ever cry and be sad he was not born perfect. He is our perfect.”

And he was right.

To clarify, we have cried many times since and still grieve over our difficult journey and the extra obstacles we face, but we do not grieve the loss of the "perfect" baby. We have our baby and accept the way he was born. It is part of who he is and luckily, he is great.

We don't reflect on those early days very often. We were scared and it was hard. It started our most difficult week, but was certainly not our most challenging moment. We are of the opinion it doesn't do anybody too much good to focus on the challenges, but prefer to accept it and move on. It is crazy to think back on it and how far we have come and his upcoming birthday just seems to be the appropriate time.

Some might say we have experienced great difficulties in the most recent years, but really it all boils down to the same daily question as any other person on any given day. Life is simply a group of experiences, Do you embrace your day or let it defeat you? Everyday I have a choice and continue to try to embrace them all. I was given the opportunity to make a significant change and I went for it. It was easy to live in the moment and be thankful for the now because it was all we could do. It was impossible not to understand what our priorities are and live our life accordingly. We were lucky; we had been given the gift that was only Sam's to give and he chose us.

3 years ago...I just can't believe it.

Sesame-Ginger Salmon en Papillote

2011-06-09T16:37:00.008-05:00

Sesame-Ginger Salmon en Papillote

Zest of 1/2 an orange
1 teaspoon peeled, minced fresh ginger
3 tablespoons soy sauce
1 tablespoon fresh orange juice
2 teaspoons rice vinegar
2 teaspoons toasted sesame oil
2 heads baby bok choy, ends trimmed and cut into thirds through the stem

1 red bell pepper, seeded and thinly sliced
1/2 cup bean sprouts
4 (6-ounce) salmon fillets
Freshly ground black pepper
Olive oil, for brushing packets
1/3 cup diagonally thinly sliced scallions, for garnish

Preheat the oven to 425 degrees F. Combine the orange zest, ginger, soy sauce, orange juice, vinegar, and sesame oil together in a small bowl; set aside.

Fold 4 (16 by-12-inch) parchment paper squares in 1/2 lengthwise.

Evenly divide the bok choy, bell peppers, and bean sprouts among the 4 parchment packets. Season the vegetables with 1 tablespoon sesame-ginger marinade. Place a salmon fillet on top of the vegetables and season with the black pepper and an additional tablespoon of the marinade.

Fold the top half of the parchment over the fish, and overlap small folds along the open edge to seal. Brush each packet with olive oil. Bake for 8 to 10 minutes, until the parchment paper puffs up.

Transfer the parchment packets to plates. Carefully cut the packets open, avoiding the hot steam, and serve.

Has anyone else discovered the Cooking Channel? I don't know when it first came around but I recently discovered it since our DVR is recording nothing due to the fact we haven't really added shows to our viewing repertoire in awhile and everything else has ended...big fan of this channel. I caught Kelsey Nixon's show and decided that looked good enough for me! I also did something I almost never do...I tried more than 1 new recipe. I tried one of her orzotto recipes which needs some tweaking so I'll post when I'm done tweaking. I even made Jack an ice box cake since he has a new found love of Oreo's...yummy, yummy and easy, easy. Back to the fish...

The good parts-
This has to be one of the easiest ways to cook fish and if you have never cooked fish you should try it. Seriously...chop the veggies, put the fish on top, drizzle with marinade, & throw in the oven. DONE.

Reasonably priced in our book. I say "our book" because besides the produce we had all the other ingredients. If you had to purchase all of those it might be $$.

The not so good-
No leftovers. As a general rule of thumb, I typically buy fish the day of, cook the day of, and dispose anything remaining so I am really only cooking for 1 meal.

I had intended to replace the salmon with a white fish, but after a lengthy discussion with our market seafood expert he convinced me to give salmon another try. While it was the best salmon I think either of us have had-still not a huge salmon fan.

Final decision: We will cook it again....with some minor adjustments.

Our versions aren't nearly as pretty...

Summer Recipe Challenge 2011 - Join Us

2011-06-05T17:36:00.006-05:00

It's not really a secret that SuperDad and I enjoy good food. This has always been a true statement. Of course, what we consider to be "good food" has drastically changed over the years, as have other variables in our eating journey.

Probably the biggest change over the years would be the simple fact we have 2 kids. Even if I was pleased with the items offered on kids menu's and thought they offered some actual nutrients, we still don't enjoy the act of taking our kids to eat. Sitting down for a full meal is not something we have really targeted; therefore, they are not very good at it. And, quite frankly, I really like my grown-up dinner with my husband and since the entire point of eating together as a family is to experience "togetherness"-I think we are covered. If we do nothing else right in the parenting world...I can confidently say that SuperDad and I spend quality time with our kids daily and almost obnoxious amounts on the weekend. We are good. So my justification for skipping the family meal...we rarely all eat together and we definitely aren't paying someone to cook mediocre food while my kids drive me crazy.

Thus, SuperDad and I have had fairly drastic changes to our eating and cooking habits. And due to the fact that I am tired of beating the dead horse I'm not even going to introduce the topic of where your food comes from and green eating, but that obviously has played a role as well.

So here we are, eating 88% of all meals at home (and yes that is a real calculation). And even though I rarely follow a recipe exactly, what happens is you tend to start cooking the same things over and over again and I am ready to introduce some new items into our repertoire. We both really like to try new recipes, but sometimes forget to look them up prior to our market run. Either way, some night a few weeks ago the challenge was presented and quickly embraced. So SuperDad and I are presenting 1 new meal/week (as permits) and will rate them, then select our winning recipe of the summer. Again, we cook a lot, enjoy a little friendly competition, and don't have much planned this summer.

Since I know several of my friends cook regularly since their recipe storage is actually on their blog or they e-mail me great recipes every now and again I thought what I great way to get even more good recipes.

So the Greer Clan challenge to you all is to join us.

There are no rules, it is all fun so don't stress...Basically, each family has to put up 1 recipe (however you choose to come up with that recipe) by August 15th. The winner will be determined by us cooking all of the recipes and having our game night group judge...if you live in town and participated you are more than welcome to join us as well.

If you do cook, it's a great way to "spice it up" and try new things. If you don't cook, it's a great way to start trying. One recipe-not that hard.

Let me know if you want to participate...you can e-mail a recipe or comment you want to play. I will remind if we are getting close and I haven't received anything.

And OF COURSE, there is a prize. We will supply the winner with one of our very favorite cooking tools (but we thought it might be dependent on the dish). So that could be great wooden spoons, a pizza stone, a great sauce pan, a good knife, or even an herb chopper. Basically, something in our kitchen I couldn't live without and if I used to create the winning recipe that is what is will be.

Hope you join us and happy cooking!!!

The Updated Plan

2011-06-03T07:25:00.008-05:00

We had another follow up last week due to the swelling and basically what we thought was swelling, was essentially a misshapen head. You can kind of tell from this picture...

His forehead looks swollen, but really because of his band for his BAHA's, it was getting pushed forward. Apparently, his skull was in a very "shapable" state. You can kind of tell from these angles the bulging that was going on....terrible pics.

So I assumed we are getting a helmet, but he doesn't think it's necessary. We are to wear a hat or an awesome sweat band. It has been a little over a week now and the results are amazing. Hasn't slowed us down one bit. His lids are still super droopy and since they were pretty severe before we are watching them closely. The second part of the surgery (or the eye lid repair) is scheduled for June 28th. It is truly the summer of surgeries. We also have the official green light for decanulation (removal of trach). OMG. We won't actually get the real green light until the day off when they do a scope but after some serious rearranging we are set for August 11th.

Welcome Emily Arden!

2011-06-02T17:09:00.005-05:00

All 9 lbs. & 6 ozs. of her!

Born to Paul's brother Jon & his wife Sheri, joining big sister Addison...

With JuJu...

Welcome Emily! Can't wait to meet you!!!

Take Cover

2011-05-24T20:18:00.004-05:00

For all of our friends and family in Oklahoma, Arkansas, & Kansas...take cover. The hail looks like snow...I hope everyone is safe and sound tonight!

Sorry for the poor images-you may really have to squint.

Invasion

2011-05-20T09:15:00.000-05:00

I have been finding these staged platoons hard at work all around the house this week. Finally the big guy caught me snapping the photo and wanted to be included. :)

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What Not to Wear

2011-05-19T10:41:00.000-05:00

If you have been following this blog for a very extended amount of time you may recall when Jack went through his various fashion phases. There was the purple only, the mismatched shoes, and pj's incorporated into every look. Sam has really been no different. He also went through the purple only phase (conveniently at the same "size" as Jack, plus it was football season so no one even noticed), and now we have entered the "I only wear 1 of 3 shirts" phase for both of the boys.

Jack's chosen ones are his tie-dye Hideaway Pizza shirt that his Pop's got him, last year's museum school shirt, or his Star Wars t-shirt, for obvious reasons.

Sam was rotating between 2 shirts-his pirate shirt (that he recently outgrew but thank goodness the boys were given matching shirts by those great folks in Colorado so he could wear Jack's now)

His "cowboy" shirt that is in no way cowboy. It is a button up shirt that has pearl snaps so I put it on him for western day and ever since has been called his cowboy shirt. I think this shirt I originally purchased for my favorite Colorado nephew and it has returned (loving the hand-me-down cycle, seriously!)

Well we are now thrilled to add an instant third shirt to the mix. Thank you Ellen! He put it on as soon as it was opened (last week). Then again on his first opportunity to get dressed after surgery, slept in it and continues to rock it again today. Don't worry we have washed it.

Welcome salami shirt! May you have a fashionable summer and last for the wear and tear to be worn by the next generation of 3Ts.

Swelling is way down today too....looking pretty good!

I want to win an Ipad2!

2011-05-19T10:16:00.003-05:00

Totally stolen from a friend's blog, but hey-I want one too! Click here to enter for yourself.

Merida Homes has some great eco-friendly rug options so check them out too!

A Happy Birthday Indeed

2011-05-18T18:35:00.005-05:00

So what did I get for my birthday?

Bangs!

Kind of crazy for me. I have only had bangs 1 other time and they were "swing" bangs so ultimately just super annoying. My hair chick was so nervous and I think was trying to talk me out of it. Finally, I just told her "it's just hair-let's do it".

The bummer part of my birthday was Sam started to have some discolored discharge oozing from one of his eyes so he got to go back to see the surgeon. Everything looks okay but he was concerned about how much pressure the swelling was putting on his lids (particularly his right) and that we may have to go in to fix the eye lids earlier than our current June 28th date. We see him again next week so we'll make the final call then. Swelling is finally going down, but still pretty large. My mommy genes tell me it's best to stay under our rock until our next appointment. :(

Friends of the Year

2011-05-16T21:45:00.000-05:00

Did you think I forgot someone?

If you remember awhile back we named an early favorite for our Friends of the Year competition and while there were some close runs every now and again, it officially goes to team Hacienda Horsch.

Obviously, when 3 of our family members take the trip to the hospital, 1 is left out. Jack has always handled it very well, full of questions and accepting of the answers we provide him. He has always been an easy going guy, but the day before surgery was talking about being "nervous" and had a hard time separating at school, and vocalizing "missing Mommy" (yes, my heart broke and the tears poured). So while I thought I was already at the highest levels of anxiety for Sam it got kicked even higher. I did some last minute things in attempt to prepare him (and me), then it was time to go. He got to spend the days at "Nathan's house" and I love that Andrea's goal was simply to keep him happy-no matter what.

It's exactly the type of goal that I needed so the majority of my worries could be focused on the one I was actually with. Every time we talked he sounded nothing but happy, healthy, and excited to be there. It is just such a comfort knowing that Jack is being taken care of and allows us to focus all our attention and energy on Sam.

So many people help us out in so many ways that we will never be able to repay all the favors. It surely takes a village to raise these Greer boys.

Congrats Hacienda Horsch! You are officially entitled to 1 play date. Just kidding-whatever you need, anytime.

Our version of normal

2011-05-15T17:01:00.009-05:00

We are definitely on our way back to normalcy which is where I like to be...

Jack got some much needed independent play time.

A peek inside...

I think (hope) Sam is reaching the peak of the swelling because I think he is even more swollen today than yesterday. We are having difficulty getting his eye drops in so they are a little dry and becoming crusty. His bruising is a little better but he still has a couple of shiners. He is almost back to a normal schedule, but still taking longer naps.

SuperDad and I are happily back to our regular eating habits, have real food in the fridge, mommy juice is replenished for the week, he got in a run, I got in a yoga, did some baking, voted, we had our nearly 30th showing, and somehow managed to sneak in some alone time. It's funny with our crazy schedule we occasionally run into 1-2 hour blocks where we have no kids and always take advantage. It is usually running to one of the our great art museums or grabbing a good rita on a patio, but yesterday was timed perfectly with Arts Goggle. Pretty entertaining.

We have had so much help this go round I don't even know where to begin. I don't think it will ever get less humbling and overwhelming the amount of support that comes our way when we time and again find ourselves in these situations. The words of encouragement on FB & the blog are always read and appreciated, the Chipotle that always arrives right on time always provides a much needed break from the hospital food that is anything but nourishing, the food that arrives upon our return delays our necessary market trip that we always think will be so easy to do but are always too tired to get done immediately, the extra nursing hours over the weekend, the play dates & over night stay with a cousin that he can't stop talking about, the cards, the e-mails, the texts & phone calls, the goodies in the mail, and last but not least the trek from the little guys favorite Pops & Juju to sit and wait with us.

It is not enough to just say thanks, but we are at a loss for other words. We are truly lucky to have so many people who care about the happenings of our family of four and hope we can return the favor.

Swollen, we are

2011-05-14T09:49:00.004-05:00

It looks so painful to me, but I assure you his personality is back in full effect. This is him smiling though so you can see how stretched he really is. We added the "Aunt Jemimaesque" doo-rag to prevent his soft band for his hearing aids from rubbing his craniotomy stitches.

He has a hard time smiling and his eyes are so puffy they almost look sunken. Next step: eye lid work in a month or so to repair the notches and alleviate some of the "sad eyes" look.

On a different note-if you are a DFW resident it's election day. Go Vote!

Sausage and waffles

2011-05-13T12:28:00.008-05:00

We arrived home around 10:30am yesterday and the exhaustion definitely started to sink in (for parents), along with some serious swelling (for Sam). Several months ago we discontinued our night nurse so I was on the night shift and I am terrible at the night shift. Around 11:15pm I was hitting a wall and since Sam hadn't budged I decided to sleep with him and just set my alarm for med delivery. He slept pretty well. He can be a restless sleeper (particularly if someone else is in the bed), but I woke up several times to little hands on my face, "Hi Momma" and then he would roll back over to sleep. After day nurse arrives I make a beeline for our bed and try to catch as much sleep as possible before Jack wakes up.

I would say 99.9% of the time I am woken up in the morning by little people standing at the side of our bed asking for something or them crawling over one of us to get in the middle. Today was no different. I woke up to Sam standing nose to nose...

"Momma, momma, momma, momma...(until I opened my eyes)"

"Good morning my love. It's good to see your feeling better"

"Momma. I want sausage and waffles and apple juice. Let's go."

Uh...I'm pretty sure the orders said no solids and I didn't even ask when we could resume because I was planning on doing tube feeds. Damage control is now in full effect to avoid the inevitable 2 year-old tantrum.

"Sam, let's go in the kitchen and see what's going on. We can definitely get you some apple juice."

"NO! I want sausage and waffles!"

"And apple juice, right?"

"Yeah, I want apple juice".

We get apple juice in 3 different cups, with 5 different straws, just hoping he will forget about the sausage and waffle debacle.

Jack is now up and asking for waffles so this is all Sam needs to go be pushed to the tantrum.

"No Jack waffles! I want waffles! Waffles and sausage for Sam! No Jack waffles!"

We have found with Sam it's just better to cut to the chase and give him (most of the time) the straight up truth. If he's getting a shot, we tell him. If it's going to hurt, we tell him. So I thought that approach would be our next step.

"Okay love-here's the deal. The Dr. said no sausage and waffles, but we can call his office and ask Dr. Hobar what we can eat."

"Call Hobar"...I then asked the nurse if he really just said that and she agreed. I don't really know why but his speech has been much easier to understand yesterday and today then prior to surgery.

Oh please let us have food or it is going to be a long and miserable day.

Good news for us! If we cut it small enough and he wants it-he can eat it. We did a little tube feeding today but have also eaten, 1 sausage & 14 pepperonis...so far.

We are back in business.

Blogger-WTF?

2011-05-13T12:00:00.000-05:00

To anyone else using blogger-

I think all posts are gone from the last 24 hours-ish? I can see your updates in my dashboard but they don't exist on your blog. Ours included. Anyone else?

We are going home!

2011-05-12T08:30:00.000-05:00

Sorry for the lag. No wireless in our room so I am actually posting from my iPhone. We are officially discharged so getting iv's out, etc. I'll post when we get home but probably tonight. Very anxious to get home!

Rise and Shine

2011-05-11T05:12:00.007-05:00

The sun is up and we are starting to get unplugged. Cranial drain, catheter, arterial IV are all out. We also removed the large bandage covering his head. Sam has opened his eyes and requested his hearing aids. He is still pretty out of it, but is recovering well and we will be moving to our new room outside of PICU soon.

I am now finishing the post that SuperDads started...it's all about balance.
Pretty shortly after I posted my love for the sedative last night it was time to start fading it. We had a rough hour yesterday evening, he had a great & restful night, then it was more of what we were expecting yesterday starting around 5 this morning. There is only 1 chair in our room that kind of folds out so SuperDad and I took shifts so I think we are doing pretty good.

He is pretty calm now and I think very glad to be disconnected-just quite a bit of pain and discomfort to get it all out. He is definitely alert enough that one of us has to be in the crib with him at all times which is pretty standard. All surgeons have been by and were expecting significantly more swelling but seemed very positive.

You can see the stitch around the corners of his eyes-they are not stitched shut (although he is not opening them very much), they are just stitched ideally until we leave to support the healing.

Shift change....

Recovering

2011-05-10T16:55:00.004-05:00

Well knock on some wood because so far, so good.

First of all, this is the best Sam has ever looked after surgery. SuperDad joked about how taken aback we were when seeing Sam right after his first cranio surgery, the palate repair. Blood everywhere-seriously. Jaw distraction wasn't much better. Your head/face bleeds a lot so it is quite typical to have blood coming out of your nose, your trach (if you are lucky enough to have one), your mouth for sure, and sometimes even your eyes. Not pretty, but as a cranio parent you just learn to go with the flow, stock up on salt before surgeries, wear a lot of dark colors, and move on.

He is definitely, significantly bloodier now than when I took this shot, but very minimal comparatively. Also, thus far, we have had a fairly smooth post-op. As I am typing this I feel like I am setting us up for a disastrous night. Anyways, one HUGE difference between this surgery and the others is because of the complex procedures (primarily cutting into the skull) he is on a sedative so he stays fairly calm and has been relatively easy to calm back down once he stirs. Big fan of the sedative. I am getting the impression they are really just for the PICU and it probably won't be accompanying us to the floor tomorrow, but we will see.

SuperDad and I are feeling pretty good as well. I'm sure it's coming since we are both on about 3 hours sleep, but I think we were so prepared for the extreme emotional battle that happens immediately after surgery we are both just enjoying the relative peace we have right now.

Thanks to all for your continued support and prayers. I can not express how much it keeps us going and entertained during these times. Much love to you all!

Waiting in PICU

2011-05-10T12:51:00.003-05:00

We have now talked with all of our surgeons and it went very well. The bone from his skull was thicker than anticipated so that is great news. They did a little correcting to the upper portion of his eye (lower forehead) by adding a bone substitute. We beat him to the PICU and are just waiting for his arrival.

All around, we are breathing a little easier...that was a long surgery! The anesthesiologist could even see his vocal cords when looking down his throat which is great news and very positive for decannulation next month. He continues to surprise his surgeons with his growth and development so we are thrilled!

Almost done...

2011-05-10T11:48:00.002-05:00

He is "plated" and they are starting to close up. It will be another 15-20 minutes and we will be heading in to see him. I'll post again after we arrive in PICU.

Update

2011-05-10T09:47:00.002-05:00

They are currently finishing up the craniotomy and getting ready to start constructing cheekbone.

8.1

2011-05-10T08:21:00.004-05:00

We are underway. Not actually quite yet, but he is back being put under and IV started. We will be called once they actually start. He did great and much to my relief our doctor's OR nurse joined him here so Sam knew who he was going back with. Time to pray.

The technicalities...Zygomatic arch reconstruction using skull bone. They will be grafting from 2 separate places (one for each cheekbone) and constructing cheekbone, essentially towards the top & middle of his skull. Incisions will primarily be in the lower eye lids and creases of the eye.

Pre-Op

2011-05-10T04:25:00.002-05:00

So I figured out last night that all of my e-mail messages from over the weekend are still sitting in my "outbox" so that will provide a very focused task for the morning and great distraction so I apologize if I haven't e-mailed you back yet.

Yesterday was a long day of pre-op...from about 10-3 and then we got to head home. I can't say it was the pre-op experience I had hoped for but here we are. It stinks because I know enough of when the appropriate time to bring things up you might want changed is but it still gets me all riled up hearing all those things. First impression is this is not a place that embraces family-centered care...I could be absolutely wrong and hope so since today we will get to see more of our "normal" crew.

Scheduled time to head into the OR is 7:30 but we are the only case for the morning so it could be early. Wireless is "shotty at best" so I may be learning how to blog via iphone.

For your viewing pleasure...

2011-05-05T16:40:00.006-05:00

Sorry for the underwear business. I do not choose the clothing battle....ever.

42

2011-05-04T11:30:00.000-05:00

So to fast forward to today I have to reflect on the last 2 weeks...

While we had a great Easter celebration in our favorite OK town, we brought back candy, eggs, and a little virus. Sam started to deteriorate Saturday evening in Tulsa; Jack as soon as we returned. It wasn't anything serious (a lot of coughing and low grade fevers), but we had to get Sam started on some meds quickly because we didn't want to reschedule surgery. I kept them both home from school almost all week. Sam had to miss his spring concert and I finally sent Jack on Friday which everyone seemed well on their way to recovery.

Here is where it gets a little complicated and starts a very long 36 hours (starting Saturday night). The end goal was to all be in OKC on Sunday morning to watch SuperDad run his half-marathon. Girls went early to offer support to a friend, and big boys + little boys came later. When we finally met up with all the boys it was pretty obvious it had been an exhausting day. SuperDad sounded terrible (allergies), Jack looked about 70%, Sam seemed to be just fine. We finally got settled, some food delivered, and boys in bed. Obviously, since SuperDad was running the next day I was on my own for any middle of the night events which came pretty steadily. Nothing serious, just constant getting up and putting kids (Sam) back to bed. I think he was just confused where he was, but don't know why he kept waking up. Jack's cough was also pretty steady through the night.

SuperDad's run started at 6:30 so alarms went off in the 5:30 ballpark which is also when Sam decided to wake up and stay up. Paul gets off for his run and I flip on the TV hoping there is an early morning Jake & the Neverland Pirates on-my kids are obsessed. Jack wakes up fairly shortly after because of his cough and we get everyone dressed and head downstairs for an early breakfast. I knew it was supposed to be cold and rain in the afternoon but failed to open the curtains to see what was actually happening which was rain and lots of it.

We have a very leisurely breakfast. It's buffet so Sam wants one of everything-fine. Kids health seems to be good and we have rain gear, but it's just not happening. It's really raining, really cold, and wasn't real interested in wandering around in it.

I will once again plug our friends blog and his recap of the race because it is awful. I really just felt so bad that SuperDad has been training hard. I feel like icing & "rolling" the knee is a daily occurrence, trying to fit in our crazy schedules time for the longer runs and then, the conditions really couldn't have been worse. He didn't feel great and freezing rain. Awful. I also knew he wouldn't give up and he would finish it because that's who he is. I had no doubt he would make his goal in typical running conditions but wasn't sure if he would be slowed down with everything else so really had no idea what time to expect him and I was afraid of the condition he would be returned in.

Then misery entered the door. He was shaking and shivering severely. It was like his clothes were taken from the rinse cycle in the washer. I finally had to turn on a warm shower before he stopped. He was done.

Since our house is on the market we scheduled an open house that afternoon and had planned on just hanging out in OKC until time to leave. Great planning ahead of time, but not working for us right now-everyone just wanted to be home. We rested a little bit, the rain somewhat slowed, and we decided to head a couple of blocks to a friend's restaurant because the boys were done with the hotel room. It took us a few minutes to checkout and "rain gear up". We start our walk which isn't bad then right as we get to the exact midpoint I see hail. My first thought is "crap! we are in OK and this can get really bad really quickly" so I scoop up Jack and head for cover because it is coming down hard. Sam was in the stroller with Paul so he has to run again and we take cover. My vote is to turn around, get in the car, and just head home but SuperDad wants lunch and he gets to make the calls today so we forge on.

We go have a long, leisurely lunch and make it to the goal time of leaving. We get in the car for our miserable drive home in cold, rainy weather timing it perfectly for a 3:30 arrival. Somewhere on the way down we get another showing request for 5-6pm. Seriously. So now we will be in town, unable to go home until 6pm and it's raining there too. We make up some errands and somehow stretch it to 6 and we are just so done. The dogs are done, the kids are done, Paul is done, and I am done. Killing time with kids has to be my least favorite activity during the rain. We show up at 6 and they are still here. We park at our neighbors and they don't leave until 6:30. It was one of the longest 30 minutes I think we have ever had. We finally get in and all parties are in bed at 8pm. Done.

Jack was up multiple times throughout the night and his cough turning to a wet cough accompanied by a high fever. Call the doctor Monday morning and we have our first household diagnosis of pneumonia (this is impressive considering Sam has a trach). Anyways, one of the worst things to be around Sam with surgery 1 week out. Our saving grace was Sam was started on multiple meds the week before so both doctors felt he was as protected as he could be but to keep them separated for 48 hours. Plus, we took a very aggressive approach with Jack (he got 2 shots of antibiotics leaving bruises on his legs) to try to knock it out as quickly as possible.

So we are currently in hour 42 and I have promised the boys they can play after Sam wakes up from his afternoon nap. They have been so sad not to play. I have caught them several times passing things under the door or leaving things at each other door. Jack is definitely not 100% but well on his way.

My new plan is to be a hermit until surgery. We have drugs a plenty, I'm making a run for more plus odds and ends because I do not want to have to reschedule this surgery. I guess the good thing is SuperDad and I are healthy...it's going to be a long couple of weeks.

The Big People Update

2011-05-03T13:49:00.000-05:00

For me, the biggest change would be I'm not really working. I took a long leave at the beginning of the year since I was feeling a little off my rocker to get re-focused and we had some things that needed extra attention so it seemed the best choice for us. While I was out, as many non-profits have done in the past several years, I had my hours cut. I am still technically a contract employee, but currently have no hours. Don't worry....I'm not missing it right now and things are in the works.

For SuperDad, he is still really liking & thriving in his job change but he added the goal of running a half-marathon to his plate. Told you he was a little crazy. I will tell my version of the somewhat miserable experience in the next blog but our friend Patrick has a great version of what the runners were up to (so much worse than my story). I think he felt it would be a great use of all of that extra energy we get before surgery and somewhere to channel it. Either way, I'm totally impressed and will never be joining him.

The other really big change we have is our house is on the market. Last fall we literally stumbled across a property while trying to be a good neighbor to some friends and fell in love with the dream of building our own house. It's a totally random thing.

The owners were the original developers of Ridglea and it was all once their family farm. They still live in one of the large white farm houses around the golf course and the only structure on our hidden property is the original slave quarters. Seriously. Our neighborhood was developed I think up until the 70s, but they had always kept this lot because they thought one of their family members would eventually want to build on it. Anyways, they never did, they put it for sale, and SuperDad and I enter the picture.

We purchased it last fall and decided we would put our house on the market this spring so we have definitely been busy. It went on sometime in February and continues to be on so I'm starting to complain. We will keep it to a minimum...we are having really positive traffic and feedback so I know it will be over soon enough.

We don't have house plans yet-I can only do 1 thing at a time and keep my sanity since we have a few other things going on like a 2 & 4 year old. I can tell you we will be building a green house and the architect & builder have been identified. I'm sure there will be many more blogs about all of that.

So that completes the "updates" blog....consider yourself updated!

The Nicest Boy in Town

2011-05-02T13:01:00.005-05:00

And that is how he refers to himself which is pretty cute. He could also be considered the guy who started it all since he is our first, but I needed to different title.

So Jack these days is (and always had been) a pretty great kid too. I think what is most rewarding to see is his concern and love for others-always wanting to include everyone. His thoughtfulness, his joy, his excitement over the smallest things, his love of being a big brother, his party planning skills, his imagination, his love of helping others, and his ability to talk almost every second he is awake.

His teacher always brings him to the car at pick up and the other day I asked the usual, "did he have a good day?" and she gave a big sigh. "You know, he just always has something exciting to tell you about". It is so cute, but it can be a little exhausting talking to him all day.

He is a fantastic big brother. They kind of have opposite roles in the fact that I would assume the little brother would just do everything the big brother does and follow him around, etc. There is some of that, but Sam tends to have the bigger, more dominate personality particularly in play. I always hear Jack asking Sam if he wants to do this or that and Jack just keeps trying until he finds something Sam is willing to play with and include him. So funny how personalities develop.

We have decided to enroll in pre-k again in the fall. He has one of those pesky August birthdays so he is far & away the youngest in his current class and I just don't think he (or I) are ready to make the kindergarten jump. The thought of trying to pick out a school gives me almost as much nausea as Sam in surgery...seriously.

The man who started it all

2011-04-29T14:00:00.001-05:00

Or at least our blog...the Samster.

I must first say I am absolutely head over heels for this kid. His spirit, his confidence, his determination, his passion (isn't that how you nicely talk about the 2's?), and his joy. He is really turning out to just be a fantastic kid.

Our medical cheers:

His expressive language is age appropriate. He is difficult to actually understand, but all the pieces are there. He has moved from the "parrot" stage to having all of his own commentary. He speaks in full & long sentences, we finished all the wh ?'s stages long ago, he loves to tell a good knock-knock joke, and of course sing songs. I am so proud of his verbal skills and hope as we move through our summer of surgeries that it only improves. Several months ago I would say no one but Paul, myself, and his nurse could understand him. Now, his teacher at school understands him with ease, his best bud & brother can communicate without any outside translation, and everyone in his close environment pretty much understands him. I will try to post some video soon but our Flip is currently MIA.

His eating is...very much progressed since I last posted, but a pain in my side. He is down to 1 tube feed at bedtime and taking the rest by mouth. I will go into all the details later because the journey is something I would want to read on someone else's blog in a similar situation.

Our medical jeers:

We have major surgery May 10th. Ugh. It has been moved several times because we are coordinating between 3 surgeons, but it is set. Sam is getting himself some cheekbones. We also have a minor surgery scheduled for June 21st with major effects-but more on that later.

Cheekbones is referred by most cranio families as the worst one (although some voted jaw distraction (JD)) and no part of me is looking forward to it. Initially, I think Paul and I thought we would probably undergo almost all reconstructive surgeries even if they were for cosmetic reasons and now I'm not so sure. I have wept over the fact that on May 10th our child would look different than he does now. I think it is absolutely medically necessary for him (his right eye is at risk to stop closing because it's so droopy) which is why we are going ahead, but I do mourn the physical change that will occur because I love the way he looks.

I am glad our beloved photographer Rasy Ran came out for another photo shoot; it also provided the content for our new header. It was scheduled when all of my girls were in town and I loved it. I'm also glad to have professional photos of Sam before the surgery because while it probably won't be a drastic change to most, it will be to us.

On top of all that, our cranio surgeons moved from Children's to Medical City. Basically, every cranio-surgeon in the area is now at Medical City. I'm sure it will be fine-they have always done the majority of cases, particularly the high profile ones...like those conjoined Egyptian twins. Anyways, my hang up is we had a groove. Obviously, you pick your surgeon first and are given the team of people that come with him but all those other people are just as important. Our two I mourn over (daily now that we are almost to the date) are the anesthesiologists and the recovery nurse. When we were meeting with the anesthesiologist prior to his JD, they sent in someone different. I remember just looking at the poor guy and saying, "No-you're not our anesthesiologist. Please look in our chart and go page our guy." Done. And sure enough we had tweaked just a little each time and got it perfect for his JD...easy in and out. It was the same deal with the recovery nurse. We always had the same two and again tweaked it a little each time and got it right with the JD. Of course, I am taking extra measures to ensure myself (and the new team) have as much information as possible from our previous experiences, but the unknown is very hard for me.

Then there is the fact it is a new hospital. I have to find out where the coffee stations are. I don't know where the cleaner bathroom is. I don't know where the good waiting chairs are. I don't where to sit so our team sees us as they exit the OR and prompts them to talk to us ASAP. I don't know where our room will be. I don't know when they typically round. I don't know if there are family lounges or I will have to get ice & coffee from the cafeteria. Some of these questions we will have answered before, and some not. Some seem rather insignificant but they are important to us because it makes our stay easier.

Sorry, little bit of a rant there...didn't see that coming.

Several people have said to us, "it must get easier the more times you do it" and I have to assure you it definitely does not. I think it is the exact opposite. Assuming no complications or other unexpected woes, this will be our last major surgery for awhile. The next on the "majors" list is ears but we are going to wait for Sam to grow a little bit and my goal is to have that wrapped up before Kindergarten. Besides the fact that Sam just needs to time to be a kid, Sam's audiological team, devices, and equipment have allowed us to be exactly where he needs to be. We just need to take a breather and enjoy all he has achieved, let him grow, and have some fun!

As usual, updates will be posted via blog on May 10th. The procedure is expected to last several hours as the cheek bones (zygomas) are being reconstructed with bone grafts taken from Sam's skull. It is as awful as it sounds.

FYI to family who checks the blog via Facebook-there is at least a 12 hour delay from when I update the blog and when it updates on FB. So, if you are wondering why there are no updates check the actual blog if you start to worry.

Maybe a little too much buildup?

2011-04-28T15:12:00.000-05:00

Well I think I did a little too much building up of a "reason" for the absence. Sorry-just really didn't know if anyone would even notice. So...

Did we have some medical drama? Don't we always have a little? My mother-in-law is officially finished with her chemo so we are all happy about that. Radiation starts soon, but expecting and hoping it to be an easier run. My boys have had a pretty good few months-happy and healthy!

Did Publisher's Clearing House knock on our door? I wish but I would first need to enter...I did win $2 on my lottery ticket last week though. That counts for something, right?

Have we abandoned all responsibility and been sipping margaritas on a beach in Mexico? Ahh, that sounds nice. While SuperDad makes a fantastic margarita, we still enjoy them in our own casa.

Am I pregnant? Definitely not and not in our plans.

Is the only way we could get Sam to eat by traveling across the country to explore new foods? If traveling to Tulsa regularly counts so he can partake in his favorite delicacy of Nacho Cheese Doritos, then yes.

Did we face more tragedy? My family has not, but I am afraid this dark cloud that has seemed to loom over us for the past several years may have moved over to another.

Did I go back to full time? Quite the opposite.

Has Superdad lost his mind? I think sometimes. He has been training for a half-marathon so in my mind that equals crazy.

So really it just boils down to....I didn't do it. I thought about it. I have several drafts, but just didn't do it.

Over New Year's I got on a spiritual reading kick which I am known to do from time to time and while I don't really participate so much in resolutions (solely because I have never been able to stick to one when done that way), I very often will see something I want to change and do it. For me, it better to start that day, that moment. Every moment you have a choice-to do or not so I have always found it easier to just decide in that moment. So long story that the timing just happened to fall around New Year's.

I had determined that I was spending more time than I wanted engaging in things I really didn't care all that much about and preferred to spend my time doing other things. While technology is such a gift, I was not always using it the way I wanted. I have made this shift before and continue as it is a journey that sometimes requires a re-focus. So, I continue to work on the balance. I do think blogging is important though so I am trying to figure out how to get it back in...particularly because Sam has a major surgery coming up and we update through the blog and continue to look to it for support.

So we are back and instead of updating with a long one I will update over the next couple of blogs. It will only be a recap as I am not going to go back and try to include things but just know we are happy and healthy and had a great spring!

Thanks again for everyone's support-we missed you all!

Taking Bets...

2011-04-27T19:14:00.006-05:00

So, did you notice we've been gone?

Does anyone still check this thing?

I am officially back and taking bets...

Did we have some medical drama?

Did Publisher's Clearing House knock on our door?

Have we abandoned all responsibility and been sipping margaritas on a beach in Mexico?

Am I pregnant?

Is the only way we could get Sam to eat by traveling across the country to explore new foods?

Did we face more tragedy?

Did I go back to full time?

Has Superdad lost his mind?

Go ahead and check in with the bookie...let me know what you think and if no one answers I will just assume that our hiatus has caused our blog to officially be abandoned.

We Are Horned Frogs

2011-01-29T10:21:00.004-06:00

I wrote this great post a couple of days ago but I am a blogging moron and I lost it somewhere in the posting process. It truly was a profound story about a journey from Fort Worth to Pasadena. An epic drama about an underdog realizing a dream that took both a bcs contractual loophole and two missed field goals in Nevada to even begin to become a reality.

Let me summarize through the miracle of digital photography.

Let's start from the start:

Luxurious Hollywood hotel room complete with roommate

New Year's Eve with local celebrities

And now let's move onto Game Day:

You know you're somewhere special when you start the day at 8:00AM on a bus complete with stripper pole (can't say thank you enough to Ross Parkin for making this happen) and Buchan rocking purple velvet

Here's some photos of me with some friends I haven't seen in a while

Obligatory family shots - that's my cool way of saying here I am with the two people for whom I would shoot first and ask questions later for, and my fantastic brother and sister-in-law.

Wisconsin fans don't like me

I like my nephew and his friends

Finally, here are some shots of us at the big game. Thanks to Dale's friend "Mr. S" for the upgrade in seats from the corner of the endzone to 45 yardline. Yes we were seated directly behind former Frog baseball coach/Athletic Director and Coach Patterson's sister. As Wayne and Garth like to say "we're not worthy."

If you question whether or not these Frogs appreciate where they are at this moment, remember that they were cheering on their team at a 21-28 loss to Southern Miss in the 2000 GMAC Mobile Alabama Bowl and plenty of ups and downs since then

Here are some post-game shots. I took plenty, but these were the only ones that can pass at a third grade level. In other words, things deteriorated pretty quickly. See if you can guess when the shots were brought to the table.

Reason #72 I'm Glad I have Boys

2011-01-10T16:00:00.004-06:00

At what point did our world become a personal phone booth? I am personally requesting any smart, creative person with a solution to speak up and tackle this problem that is so rampant across nearly every setting. If you think back to our pre-cell phone lives (hard I know), the phone booths were really an ingenious way alleviate this problem. While typically dirty and uncomfortable they provided a necessity by offering a phone but also solving the problem of providing privacy for the phone call. Oh how I miss them.

Evidenced by an overwhelming amount of uninteresting postings on Facebook and Twitter (including my own), I’m pretty sure everyone thinks there life is interesting and that the majority of people want to hear about it….every word in fact. So as I sit here in this Starbucks listening to a young bride, the trials and tribulations of the pink vest & ties to match the pink pashminas, the invitations of family to read scripture, the debate of where to rent the tux, the pleat vs. flat front debacle, the fiancé walk out without even telling her goodbye because she was on the phone, I wonder…if we brought back the booth would she go sit in it? I guess we would have to redesign them to include some comfy chair, an outlet to charge the multitude of electronics she is lugging around with her and of course to annoy me even more she is taking up 2 plugs (3 outlets) when each chair is clearly allocated 1 plug. Can we make her go there? Should we pass some legislation that only allows you to talk at some decibel level and if you are making a personal phone call that it needs to be made in a personal space that does NOT include the “comfy” area at Starbucks, airplanes, grocery aisles, or checkout lines. I will admit I am guilty, but when we know better, we do better…so, I try.

Of course I find it all completely fascinating. I listened to her fiancé fail to have the over joyous reaction to a job offer she also received while sitting in our nook. This resulted in an immediate phone call to her mother informing her of the disappointment in the “thinking through” of the job (reporting what he said). Poor mom also failed with the wrong reaction and so it was necessary to bring in the big guns. She called her father with the greeting of, “Hi. I need to speak with John Doe, this is his daughter” in a most urgent tone. While I have no idea what this father does for a living, I’m sure he was probably not ready for the whirlwind of details and scheming that was coming his way. She informed him of the job offer (no cons included) and how it was the ideal job and she was taking the job. He then had to hear much of the pleat vs. flat front debacle and give opinions on Uncle Ted’s reading ability for the scripture.

And in case you are curious, the awfulness said by the way fiancé was a recommendation that she not stop looking and maybe apply for a few other jobs before taking the first one offered to her…what an ass.

Best of luck guy, best of luck.

I also should say I do understand the irony in my own rant of "no one cares but you" as I type this. It is nothing short of meaningless, full of judgment, and would absolutely fall in the category of "no one cares but me"...BUT if you really want to look at the details, this blog didn't come to you. You in fact have to go directly to this website to follow my uninteresting posts so it must be a little interesting, right?

Later 2010!

2010-12-31T21:16:00.003-06:00

It is official...besides our friendly neighbors down the street who are quarantined, I feel like the last people (we know anyways) left in our little town. Almost everyone we know if Rose Bowl bound...including SuperDad. Unfortunately circumstances are what they are and I hope this may be the last year I have to miss out on Frog fun. So the best distraction I could think of was to throw a NYE party, perfectly appropriate for all 2 to 4-year-old boys (and maybe one 2-year-old girl). Jack and I went to the party store, purchased the Star Wars section, decorated, and then learned that Apple TV has some Star Wars Clone Wars cartoons and we downloaded season 3. Pretty good and our little ones asleep by 8:30 sharp. Happy New Years!

Acting! Genius!

2010-12-29T16:09:00.005-06:00

The shortest of the series...

Welcome George Lucas

2010-12-26T16:25:00.005-06:00

While I was fully anticipating your arrival, I am a little taken aback by the early arrival. Thanks to our recent book choices the past several months from the library I am thoroughly brushed up on my characters, battleships, the lineage is still a little shaky but getting close. I welcome you with open arms...even if it is forced.

After watching the play back, I can't really tell who is more excited-Jack or his uncle. Boys and their toys...

Our e-Christmas Card!

2010-12-24T14:13:00.000-06:00

Wishing you Joy & Happiness this holiday season!

Much Love,

Paul, Carrie, Jack, & Sam

You can't catch me, I'm the Gingerbread Man!

2010-12-23T08:31:00.000-06:00

Which is a favorite read this holiday season, particularly since it is often requested in the Spanish version and I'm sure I am butchering the pronunciation of most words.

Either way, our good friends had their annual gingerbread cookie party. Here is what you start with...

And trying to get a picture of these kiddos is almost impossible once candy is involved-they are still super cute though.

Jack immediately took to the decorating and proud of his accomplishments.

I don't know if any sweets ever made it onto N's guy and sweet E thought it might be a little too good to be true.

I am sure this little cutie has never even seen candy but she was an immediate fan.

Charlie was a man of few words with candy canes available.

Sam wasn't so interested in the decorating (or sweets).

However, dinner with his best bud is always accepted.

.

Maybe next year little little man!

It's a crafty Christmas

2010-12-22T12:47:00.000-06:00

Our card wreath...

I stole this idea from my recent Martha mag. It was super easy and I have always needed a way to display XMAS cards. The drawback of it is it's not nearly big enough for the amount of XMAS cards we get. I took this picture maybe last Thursday and we can not fit one more card as of today, so we need another option...got quite a few on there though but now it looks more like a cluster than a wreath.

And because of the great computer fiasco this fall we will NOT be sending Christmas cards this year...I know, I know-very pitiful. We happened to lose my address file though so I don't have any addresses to send them to. HOWEVER, I am adding all addresses that come our way so if you want to be added onto our list you better drop a card in the mail so I can add you! :)

This is our handmade Christmas card attempt for a (very) few family members. It started with one of these templates and then Jack & Sam added their own pizazz. Jack was super excited for the first 3...the rest was quite a debate. Sam participated in maybe 1. Maybe try again next year.

Happy Holidays!

Jack's Debut

2010-12-21T12:47:00.002-06:00

And I promise he did get a good night sleep the night before...

Good Tidings we Bring

2010-12-17T14:40:00.006-06:00

If this doesn't warm your heart, I got nothing else.

I would recommend the short one for a quick peek.

This one is significantly longer and primarily posted for family who would enjoy it. Gotta love in the middle how he blows his cap of his trach and his teacher just pops it right back on...I'm sure the other parents were horrified. :) Jack will be making his debut on the next post.