Monday, January 12, 2009
Infection and Doctors and Meds, oh my!
The fun actually started with our first appointment in the "get established with a million new doctors" marathon. Gracie's new ENT promptly informed me that she had fluid in her ears... BOTH EARS. This was shocking to me, as she hadn't shown any signs of irritability. A quick tympanogram (an electronic and acoustic measurement technique used to assess middle ear status - - i.e. to determine whether the fluid pressure is too much, thus requiring treatment) and voila, we are sent packing with a prescription for Augmentin. Poor Gracie... that translates into lots of diapers and a wicked diaper rash. That was December 10th.
The next day both kids saw their new Pediatrician, who was recommended by the ENT. I really like both docs - - and have definitely had the chance to form an opinion given that we've seen them both multiple times already. That went well and was without any surprises (with the exception of a lovely "two" performance by Preston!).
I have to say, the Pediatrician was exceptional with Gracie and she was exceptional,too! She handled the wait time and stress of being at the doctor, especially another new office, very well. I was incredibly proud of her.
Right before Christmas was Gracie's first Medical Therapy Unit (MTU) clinic eval. This is to get her established with the therapists through CCS (California Children's Services). This finally has been set up after two years of struggling with keeping eval appointments due to Gracie's health and battling with finding a neurologist who would take our knowledge and observations of our daughter seriously. Finally, she was able to have the full diagnostic evaluation this past fall. With that evaluation came an additional diagnosis (in addition to CHARGE Syndrome) which we received in letter form upon return from our first house hunting trip down south. The letter had her diagnosis in bold across the middle of the page:
Diplegic Cerebral Palsy
The "mild-to-moderate" CP diagnosis, in all reality, does not change anything or define anything as far as we are concerned. It only helps explain some of the additional delays and struggles that Gracie is experiencing. We've always known her brain structure is not normal, and we knew we had to wait until she was older to see how it would affect her. This is the (or one of the) answers. It does, thankfully, help her qualify for additional therapy through the state agency.
That same afternoon (after the MTU clinic eval) was cardiology. I got a great feeling from that office, too. Everyone was very friendly and attentive to Gracie, including the doctor, which was a good thing! He gave her "the works" - - echo, EKG, pacemaker check. He wasn't thrilled with the amount of leakage from her mitral valve and was even less thrilled at how large her right ventricle appeared on the echo. I explained to him that she's always had a 'larger' heart, but that compared to the size at infancy and prior to her first surgery, it's (according to her previous docs) much more proportionate to her age/size now. (Incidentally, her first surgery caused a slight "moment of awe" in the OR, as no one in the room had seen a heart that large on a baby her age & size.) Her new doc wanted her back on at least one of her two doses of Lasix each day. (This had been held due to the feeding difficulties. Since we were fighting with proper hydration and calories, her team had agreed to withhold that med.) We suddenly went from a six-month check-up plan to a two-month plan with cardiology. I am hopeful that once he gets to know Gracie and has more time to review her chart, he will reduce the visits.
Just before the New Year was our visit with the new GI doc. He seems nice enough. He was running behind and must have looked at his watch 10 times while asking me very loaded questions about Gracie, starting with, "Why are you here today?" Ummmmm... try condensing that one down! I don't know where to begin. With all of the issues that she's had and continues to have, where exactly do you start a conversation that will need to quickly cover a very detailed 5 1/2 year history?
In a nutshell, he got very few of the details (It will take time, I know, for him to learn about Gracie and for him to read and listen to all that we have already tried.) and said this, "She needs to gain weight. In order to gain weight, she needs more calories." Ya think?!
Needless to say, not a stunner of an impression. But I will be (slightly) patient. Gracie sees him again the first week of February.
(Her weight and feedings continue to be a huge struggle. She dropped more after the move and at her lowest, was an even 23 lbs - - her lowest weight in over three years. I have been FIGHTING with her each day and have put on 1 1/2 pounds. It is a struggle with each feeding. And now, in addition to the actual discomfort that feedings can have for her, there is a behavioral issue surrounding feeding and control.
New Year's Eve... follow-up with ENT... ears looked good. Yipee!
All of this brings me to our current state of infection. Last week, after the lovely sibling playtime in the backyard, I noticed that Miss Gracie was sporting some pretty glassy eyes. Within 24 hours, her trach secretions were sticky and yellow and she had a low grade fever. I called the new pulmonogist, but since her first appointment isn't until the 16th and he couldn't see her sooner, he wasn't even able to order a culture for me. I called her ENT and left a message at the end of the day. When I heard back the following morning, Gracie's secretions had morphed into colors that should only be produced by Shrek and the Incredible Hulk. I was concerned... especially since she's on an inhaled antibiotic (Tobi) on a rotating schedule 28 days on, 28 days off. She'd only been off 11 days. And remember, she'd also recently been on a course of Augmentin. So, this new (or revitalized) bug was unsettling.
Last Friday we saw the ENT... again. He took cultures, and prescribed Septra. Gracie had one dose on Friday evening and another dose on Saturday morning. On Saturday evening, we discovered that she was covered in a very red, splotchy rash from head to toe. On her scalp, behind and in her ears... torso, armpits... it was everywhere and it itched. Bad. My poor, happy little girl was a mess. Needless to say, we did not give the med again. I called the doctor, advised the service of her status and said that I would call again if she got worse. In the meantime, I asked if another antiobiotic could be prescribed so as not to have her get so much worse over the remainder of the weekend. He wanted to wait until Monday.
We gave her Benadryl, soothing baths, applied hydrocortisone and calamine. All of this offered little relief and she really wasn't that much better. Very itchy... everywhere. So, Monday morning I cancelled her appointment with her new dentist, called the ENT to discuss the antibiotic and the Pediatrician to discuss what I believed to be a brewing yeast infection... ugh.
We waited for a VERY long time in the sick room of her Pediatrician's office today and learned that yes, indeed, Gracie is the hostess of a healthy yeast infection - - this is a first. He instructed me how to treat it and assured me she'd be feeling much better in her nether region within 24 hours. He also suspected, just as I had started to, that the "allergic reaction" was not an allergy at all. The fact that she is continuing to get worse is indicative of some other infection that her body is trying to deal with. The antibiotic could have triggered the reaction, but since it's not been administered in over 48 hours and she's continuing to get worse, it's not likely an actual allergy.
Time will tell on all of this. We are waiting to discuss the lab results with the doctors, as the initial results, per the office assistant who called late this afternoon, were concerning and led to a discussion with infectious diseases. I should hear something first thing in the morning.
Saturday, January 10, 2009
Moon Gazing
Preston loves the moon! He will proudly point it out in books, the sky (day or night) and any other place that he might see the moon or it's image.
The first time I realized, really realized, that I had to pay really close attention to everything he says and never discount his keen observations was when he was about 14 months. He said, "Mama" and signed, "moon." It was the middle of the day and we were working out in the yard. I said, "Oh... no Bubby, that's the sun. You'll see the moon tonight." He said and signed it all again... and pointed. I looked. And... he was right. There it was, an ever so slight sliver of the moon, almost transparent, in the bright blue sky.
So, I before I correct him, I now look very closely, listen very closely and make sure I am 100% certain before I speak! And, no matter what I see or hear, I almost always take his word for it!
Thursday, January 8, 2009
Also lovin' this part of the 'twos' (and 5's!)
I love how inspired Gracie is by Preston.
I love how they interact.
I love how considerate and aware Preston is of Gracie.
I love how much she adores him, often looking up at him and chuckling at whatever shenanigans he's into.
I love how much he adores her, always wanting her included in everything, so much so that he smuggles food to his sister who cannot chew or swallow!
I love that he wants to take care of her (even when he's not supposed to touch her equipment!).
I love that she's completely intrigued by his diaper being changed - - mesmerized with a silly grin that clearly says, "What is that thing?!"
I love that no matter how 'stinkery' and "two" he can be, that's not who he is!
I love that he now says, "Mama, buh" (and signs, "bug") or "Mama, pieduh" (for spider) to let me know there is a critter in our midst. I love that he tells me when Daddy's home, "Mama, Dadda, owhm" (signing our names and "home").
I love that no matter how busy (Mr. Perpetual Motion Superhuman) he is, he almost always slows down to do stuff at Gracie's pace when she wants to play.
And I love that no matter how many times it seems like she's "stuck," she will surprise us all and recover what we'd thought she'd lost and then, as a bonus, add in a new trick or two ~ like sitting independently and rolling the ball back and forth for over twenty minutes!
I love that she is opinionated (and obsessive) enough to expect a lick of some sort of dessert every night! THAT'S my girl!
For these reasons... and countless more... I love my kids.
Monday, January 5, 2009
I'm that mom and lovin' it!

It's official... I am that mom.
You've seen her, perhaps you've been her, or are still her. Or, perhaps you have given her that look. You know... the one that says, "C'mon, you're the parent. Take charge of your child and get him quiet, for crying out loud!"
Sound familiar? Welcome to my life... life with an almost two-year old. Yes, that's right. The same sweet, inherently kind and affectionate boy with the big, innocent blue eyes that you see all over this blog has ANOTHER side to him... and it can be terrible! And, I am happy to report... TYPICAL! :-)
WHEN I KNEW I WAS IN FOR IT:
Location: Our neighborhood Target
(If there are any terrible-two outings in your future, consider NOT shopping at your local stores! HA!)
The scene: Quickly loading the double stroller with the items on my list.
(I can pack a mean stroller these days! Who needs a cart?!)
It was a short list - - short enough that I had foolishly hoped I could browse around for a few minutes. Silly me.
I was loading the last item into the stroller when I suddenly heard a loud, LONG scream. "Wow," I thought, "that kid has lungs like Preston. That is Preston. Lovely."
I explained that we were almost done. He didn't care. The screaming continued as I proceeded to the checkout line which was unacceptably long. He did not want his sippy cup, he wasn't impressed with the smorgasbord of snacks I was offering and he had twisted himself in the stroller so that it looked like I had no clue how to strap him in.
I felt the heat rising in my body as the internal dialogue continued, "Where did my compliant boy go? Should I just dump all this stuff and leave? That sure would be easier if this were a cart and not a stroller. I could ditch a cart, can't ditch the stroller..." although at the moment, it was tempting! "Clearly I won't be making second stop," I told myself. Then I felt her eyes... the elderly woman whom, I am guessing, never had kids herself. She looked at me with such disdain - - lips pursed and a "kids are meant to be seen and not heard" scowl plastered across her disapproving face. Again I tried to quiet him. Again I failed. I decided that I needed the items in my stroller and I would just wait it out. Thankfully, Preston's whining quieted a bit and he just fussed while we waited and then paid. I exhaled. That was my next mistake!
When we got to the parking lot, I put the bags in the car and then told Preston it was time for him to get in. He told me, "No." Miss Gracie sat calmly and smiled at whatever was making her smile. :-) I let him know (again) that he doesn't tell Mommy "no" when she tells him to do something. I got him out of the stroller, picked him up and as I walked toward his side of the car, he let out the most amazing scream. (Have the need for voice over work? He's your guy!)
He practically leapt out of my arms as I tried to get him in the car. A woman parked next to us, went into the store and came back out and I was still in the same toddler predicament. She didn't make eye contact or offer any sympathy. For a moment, I envied her childless shopping outing and the car that surely had no crushed goldfish on the floor.
It was barely 50 degrees outside and I literally had sweat dripping off my forehead. I had wrestled with him and tried to "fold" him into his carseat without a victory. I wondered exactly how much force would be too much to get him strapped in. More than that, though, I realized I was so hot, I couldn't think, and despite the cold air, I took off my sweatshirt. "That's better," I thought, as though removing a layer would somehow change his behavior. We wrestled more and I continued to lose. I wondered if all 19 month old boys were this freakishly strong.
And then, in between the screams of my son, I heard the voice... the parking lot angel who shouted across the aisle, "Mama, I so feel your pain!" I turned around to see another mom unloading her two kids from her car. She continued, "I have been there, I feel your pain!" At that moment, I wanted to run across the parking lot and hug her! I didn't, of course, but I wanted to. I needed that show of support.
Preston continued to scream, "Nooooo!" about getting in the car, until he saw her son... then he waved, said "Hi!" and pointed to the moon while signing and saying, "Moon!" (Pronounced 'muwn' in case you wondered!) We both laughed and she commented, "Oh, you have a charmer, huh?!" She knew and she could still laugh about it.
It was at that moment in the parking lot that I realized this is just one more "typical" stage of development that I'd yet to experience as a parent. I was completely frustrated, don't get me wrong, but I also felt a sense of peace in the realization that, this is the kind of stuff I actually "want" him to be able to do. This is typical and normal. This is good stuff and I am lovin' it.
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(Don't worry, Miss Gracie was fine! She happily hung out in the stroller with her tube feeding running and was blissfully unaware that her brother was causing such a fuss! And, since a car ride or stroller ride are the only ways to feed her on the pump when she's awake, Preston actually helped extend her mealtime!)
Wednesday, December 31, 2008
2008 Holiday Memories
Wishing you a happy & healthy 2009!
Wednesday, December 24, 2008
Friday, December 19, 2008
Putting our toes in the Pacific
It was pretty chilly... I still can't believe that John was in short sleeves! Granted, it's still Southern California, so it's much warmer than where we lived a month ago, but it is definitely not "beach" weather at all!
This was Miss Gracie's first time at the beach. When we came down to look for a place to live, she only got as close as the walkways at the border of the beach. She did not touch sand or water on that trip. But on this day... her little does dug in and she kicked sand and water!
I just love the shots here...
Gracie's toes left such a distinct, raking pattern deep in the sand. I swear her little toes are as strong and adept as fingers! Preston's "feet" shot is the back of him because I could hardly get him to stop moving and face me for a picture! As it should be, right?!
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When we were done at the water, the sun finally decided to peek out from behind the clouds... and suddenly we heard all kinds of hand percussion music. This is what we stumbled upon and how we were all welcomed to join in the fun!
Apparently, these guys are there a lot, so we will surely visit again! We didn't get to chat with them too much as we were busy keeping both kids involved! They had a ball - the kids and the guys playing! They were really sweet and asked a bunch of questions about Miss Gracie. One of them asked me how to sign a few things so he could try to communicate with her... I just love people who aren't afraid and who try like that! And, I especially appreciated the fact that he didn't care that she was far more interested in his instruments than his attempt at signing with her!
Tuesday, December 16, 2008
Greetings From Our New Nest

So much to catch-up on that I don't really know where to begin! (I've said that before on this blog, haven't I?!)
I guess I will start with the week of the move, itself. On the Sunday before we left, my amazing girlfriends (from college... we've been friends now for a LONG time!) took me out for a fantastic dinner. Amy, Becky and Erin... thank you so much for such a wonderful evening... one that I didn't want to end for fear that it would be the last one for a very long, much too long, time. I don't remember the last time the four of us had a "girl date" that didn't include kids! I think it was when I was pregnant with Preston...? I spent my drive there and home biting my tongue and trying not to cry, sure I'd never stop once I started. Even though we are all so busy with our own families, it has been innately comforting knowing that you are just a car ride away. Now that you're not, surely we will need each other more! I just hope that you all decide to visit... often... and together - - so we can have that kind of dinner again, soon! I miss you so much already... but I thank you for fueling me with "SMC Sisterhood Strength" before I left! I love you all so much!
It goes without saying that my mom is the only reason we actually made it out of town. While I took care of the kids and the day-to-day stuff, she did all the hard work. Never in a million years could I have packed our house alone. Never. Likewise, I couldn't have unpacked it alone. She had the kids' rooms unpacked and comfy the first night that we stayed at the house. By the time she left (the Friday after Thanksgiving) the family room and kitchen all looked like home. Thanks, Nana! You ROCK! And, thank you for taking care of so much of the logistics in getting the old house ready to rent out. I truly cannot think of ways to thank and repay you. Certainly, if I had the cash, you'd be sitting at some fancy spa resort being pampered like a movie star!
We've had a few little hiccups (or "comedy of errors") along the way, but nothing that can't be fixed and certainly nothing horrible. Not all of our stuff made it on the moving truck. (And, to think that I tried to purge our lives a little... but, still, too much stuff. I need to learn to be a minimalist... and so does John!) So, the moving company will be delivering our overflow next week. It's all "garage stuff" for the most part, so it hasn't been missed much yet and will just need to be organized along with the rest of the stuff that's already in our garage!
We had a huge plumbing overflow (oohhh... fun!) on the first Sunday in the house. I was madly doing laundry and the master bath toilet kept gurgling whenever the washer drained. Eventually, it overflowed. Good times! Then, John went to get some work done (again, because things that require brainpower are difficult to accomplish with the kids awake!) and stepped out the front door into a puddle of sewer... yucky. The flower bed "runneth over," down the driveway and into the street. So pretty. So I spent the rest of the day trying to get in touch with the landlord and then finally just called a plumber as it couldn't wait. Lots of roots in the line... typical of older homes. Reminds us of our first house we bought together... so there's some nostalgia in the stopped-up sewer for us. I guess that's something!
In all, the house is working out great. I have a hard time being a tenant, though, as I've never really done it before. So I keep looking at what I'd change - - how I'd redo the floors, the yard, the kitchen, the baths. And it's really hard for me to remember NOT to do that. I am very happy here, don't get me wrong. It's so nice to be with John again... even if only for five minutes a day when he's working.
The kids are really happy. Gracie took to her new room like a champ and LOVES it. She had NO problem adjusting... a miracle, really. The first night in the house, she knew exactly where to go to bang on the door with her feet and furiously sign "bath time." I was so pleased and so incredibly relieved. Preston, on the otherhand, will NOT sleep in his room unless placed there after having fallen asleep in the family room. My sweet, easy-to-bed-boy, who used to throw me kisses through the slats in his crib before he laid down and closed his eyes, now stands there screaming "NOOOOOOOO, NOOOOOOO, NOOOOOOOO!" at the top of his lungs, shaking like a leaf and sobbing. He seems genuinely terrified and will not let up the tears. He doesn't get exhausted enough to just lay down and fall asleep. ANY advice on this front is greatly appreciated. I did NOT see this one coming in any way. He used to go down for bed and naps so easily. His new room is much bigger than the old one (same with Gracie's)... perhaps that's too scary for him... a whole wall of shelves for all the toys and books. Not sure. The landlords were kind enough to let us paint the kids' rooms the same color as their old rooms to help with the transition... minus Preston's red accent wall... so things look somewhat familiar.

He was on the "swing" shift to start and now has moved to "graveyard" just yesterday. Needless to say, we are all trying to adapt to his new schedule. Thank goodness he can sleep through anything! Now he just needs to figure out exactly when to sleep!
The kids and I have kept exceptionally busy during the days. We have started the marathon of doctor and therapy appointments for Gracie. Fifteen in all (I thought 13 before... but I miscounted!) and the specialists for her "major issues" (not my phrase, a nurse's at school) must all release her prior to the start of school. We can't get in to all of them this month, so she won't be able to start school until sometime in late January. Oh... then there's the school placement. I have toured two programs for her. Both are good, but for very different reasons. This, too, will have to be another post. Let's just say that John and I are weighing all the pros and cons (sites unseen for him) and trying to come up with a decision by the end of the week. I will be talking with two of Gracie's former teachers to get their input, as well.
In the meantime, here are some catch-up photos from the past month!
Let's start with the nostalgia!
On John's last weekend at the old house, we took the kids for a long walk, went to the park and then they each took a "last ride" in the swing that hung in one of our trees in the front yard. That tree was no taller than John the day we moved in. Now it's huge!
(I thought I had emotionally detached myself from the house the day I drove away, but going through these pics made me a little homesick, I must confess. Today, when the kids and I ran an errand, I drove down to the beach for a second and got over it!)
So... how cute are they?!
Preston thoroughly enjoys his new backyard... and so does Gracie. Neither seem to miss the old one we worked so hard for!!! :-) This is a good thing! The "things" that matter (or we let ourselves think they do) do not matter at all to the kids. They don't miss the newness of the old house, the meticulously landscaped yards, the hardwood floors (okay... maybe Miss Gracie does for scooting, but not for her traction when trying to sit up against furniture!) or the crown moulding. They just care that we are all together, they have a place to play, a place to be loved on by both their parents. They still get to have a bath every night and share the center of an Oreo (or two) when Mommy gives in. The kids know, regardless of whether they are able to intellectualize it, what really matters and remind us of that all the time! Friday, November 7, 2008
The Graduate... The Officer
CODE OF HONOR
I, a member of the California Highway Patrol, subscribe in word and deed to the following:
To serve the State of California honestly, and conscientiously; and fulfill my oath as a soldier of the law;
To uphold and maintain the honor and integrity of the California Highway Patrol;
Be loyal to my fellow officers; respect and obey my seniors in rank;
and enforce the law without fear, favor, or discrimination;
Assist those in peril or distress, and, if necessary,
lay down my life rather than swerve from the path of duty;
My personal conduct shall at all times be above reproach and I will never knowingly commit any act that will in any way bring discredit upon the California Highway Patrol or any member thereof;
To all of this I do solemnly pledge my sacred honor as an Officer of the California Highway Patrol.
Knowing that John has two cousins who are active officers and an uncle who is retired, I was deeply honored that he asked me to pin his badge. Without doubt, one of my proudest and most memorable moments as his wife.
John (center) with his cousin, John (left) and James (right)
I will, most likely after the move, be posting a detailed slide show of the day. We have so many great pictures... and many more to come from all of whom took pics that day! I just couldn't let another day go without paying tribute to his accomplishment!
(Don't forget... you can click on the pictures to enlarge them!)
Halloween
a pumpkin patch photo this year.






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