Wishing you a happy & healthy 2009!
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.
Monday, October 27, 2008
More updates w/ Good and Great news!
HUGE thanks to my mom, who gave up the weekend to look at homes on our behalf... if she hadn't been there this weekend, the house would have been snagged up by someone else today! It happens to be the house John spotted on our quick trip two Saturdays ago... so we have seen the exterior, the floor plan and the photos from the MLS listing (from when it sold over a year ago), but only my mom has seen the inside! It is, she promises, by far the cleanest rental we've seen to date... and we've seen some real dumps for a small fortune. It is older and not yet been significantly updated, but it's in very good condition. The location is really important to us - - we love the neighborhood - - tree lined street, parks, families everywhere, walking distance to shopping and coffee (a MAJOR must have for this household given the lack of sleep!) and the school district is wonderful. It is also five miles from the driveway to the pier at Seal Beach. We are very much looking forward to seeing the ocean on a regular basis!
Thanks to all who posted and emailed regarding Miss Gracie... the support is something I carry with me always. And, thanks for the suggestions, too... that's exactly what I need now... to make sure we have thought everything through and exhausted all possibilities. Thank you!
Gracie girl had a really great afternoon yesterday (Sunday) - - mainly because we skipped her late afternoon feeding to give her a break. I know... not a good choice because of her need for calories and fluid, but a great four hour stretch of time where she had so much fun and didn't fuss about anything at all. She rode the tricycle, wanted to walk, play and be upright... she signed more during that part of the day than the whole rest of the day put together. Interesting. Like I have said for years, it would be so much easier if we didn't have to feed her.
Today, because of the difficult weekend, I opted for very diluted formula and no added fat. She had a much better day... but oddly enough, her most difficult times were with her two smallest feedings of the day. She has school tomorrow and I never push the limits on school mornings because I want her to have a productive experience. (To answer Lisa's question about the TPN (IV nutrition) option, it has been discussed, but is a last resort... more on that later.)
My hope is that we can stabilize her loss enough to avoid TPN and then get in with new doctors. This move could be a really good opportunity to get new, fresh perspectives and heads in the game. That is my hope...
AND FINALLY... DRUM ROLL PLEASE!!!!
Been so wrapped up in our own stuff that I forgot to share the good news of others!!! (Not to mention I had been sworn to secrecy until my brother had a chance to tell our mom in person himself, that I almost forgot I finally could share!)
OK... so that sounds like it's about me! Oops!
My brother, Brian (my only sibling), and his wonderful long-time girlfriend, Vanessa, are going to be parents! (...of a human baby! They do have three four-legged babies already!)
Their sweet bundle of joy is due April 10th and they will find out the baby's gender (provided he/she cooperates!) on November 16... just three days after Brian's 40th birthday!
Congratulations, Brian and Vanessa! We are so happy for you!
Saturday, October 25, 2008
Updates... Good and NOT Good...
John graduates on Halloween! HE DID IT! I am so proud (PROUD PROUD PROUD) of him... more on that later. (And a huge post following the graduation ceremony, of course!)
House hunting was unsuccessful - - and successful - - all at the same time. The trip with my mom and the kids proved to be a good one, in that we found the area that we want to build our new nest. We did not, however, find a house.
John and I also flew down for the day (really only three hours from the time we picked up our rental to the time we turned it in) to see one house that we thought was the "one." It turned out to be a dump. The trip wasn't a total loss, though, because John spotted a "For Rent" sign on a home that hasn't been heavily advertised. My mom so generously offered to help us look, so we are paying for her travel expenses and she is down south right now checking out that house and some others on our behalf. Fingers crossed, please!
NOT GOOD:
More stressful and concerning than making moving arrangements and setting up our new nest is what is going on with Miss Gracie...
Gracie has always had major GI difficulties... MAJOR. I have posted about them on this blog before. Years of cyclical migraines, gastritis, intolerance to fat, intolerance of significant volume, small bowel lymphoid hyperplasia, slow emptying, GERD... the list is really endless. Anytime she is stressed or sick, it first manifests in her little gut. We have always struggled to meet her caloric requirement for growth & nutrition. Proper hydration is always a concern. On a good day she will barely meet her maintenance requirement... as of late, a good day is rare. And, without proper hydration so many things occur - - headaches, poor digestion, irritability, etc. So it is truly a vicious cycle... and one that we can't seem to resolve.
Since her pacemaker generator replacement, she has down spiraled with her ability to tolerate her feedings. Her weight has plummeted to a a mere 25.4 pounds. No one knows what to do next... and I have truly never been more terrified. It's taken me days to post about this because I was hoping that by some miracle I could post about the problem and the solution, but there isn't one. I fear that her little body is rejecting nutrition, and coupled with Gracie's newest behavioral issues regarding feedings, she is rejecting her feeds. Her brain and her body are working against her...
I have had numerous conversations with her GI doctor... it's so unsettling that she doesn't know what to do next either. I think of all the things we've already tried over the years... a nissen fundoplication, bypassing her stomach (she had a G-J tube for almost two years with no change), drip feeding her nearly 24 hours a day, keeping her G-tube vented so that she constantly can relieve any gas pressure. In general, a slow, constant drip feed seems to be the "best" way to feed her, but hinders her mobility, prohibits her from any gross motor work, angers her to no end because she feels "tethered" to the feeding pump and pole, and offers her little Independence because an adult is always one step behind her with the pole in tow. We've tried bolus feeds (where she gets a large quantity of formula through a tube and syringe over a 20-30 minute period). She has never tolerated a true bolus - - even at 5 1/2 years old, she can't tolerate much more than four ounces over 30 minutes and because her motility is slow, she can't have another feeding for at least three hours. Today and yesterday, she threw up more than she kept down. Her night feedings are not well tolerated at all... we have to dilute the richness of the formula and feed her very slowly in order to keep her from coughing, retching and grinding her teeth in discomfort all night. Unfortunately, we HAVE to feed her at night to 1) try to keep her hydrated and 2) any calories she gets during the night are crucial. These issues coupled with her already "very iffy" sleep pattern results in a very long night in our home. (Gracie is famous for the 'night parties' she has usually several times a week. She has never required much sleep and often gets it in two segments of time at night with a several hour gap of wakefulness in between.)
I worked so hard to get a little weight on her before her surgery... but at that point, she wasn't insisting on her feeding pump being "off." (She signs "food" and "off" and is very insistent about it. Eventually, she will just sign "off off off" over and over until it's disconnected.) And, by "insisting" I am not just talking about her signing. If I tell her "You must eat" or use her timer clock to show her how much more time there is, her behavior becomes more self-injurious. She will bang her head, smack her fist into her mouth or smack her head. She will work herself up into a sweaty frenzy and then throw-up because of it. So, really, I can't win. It seems that she is for most feedings, having either true discomfort and pain - - or significant behavioral issues that result in emesis.
She tolerates the feeding pump much better in the car or the stroller - - I think because she is not hindered by it in those settings. Knowing that, I thought that our road trip down south would allow time to "fatten her up," but because she was sitting up (either in her car seat or the stroller) most of the day, she was really uncomfortable and didn't tolerate feeds well at all. She coughed, had increased secretions and would cry the minute she saw the tubing coming near her. And, she was always so relieved to be back in the horizontal position. She never fussed about being upright as long as she didn't have to eat.
And... in all of this, I have to consider that the more obsessive behavior regarding her feedings is her way of communicating. She might be trying to exert control in her life - - we all want some control, why would she be any different? She has very few things that she truly controls... and really, when you think about it, how incredibly frustrated would you feel if someone were constantly trying to make you eat? Is she expecting that it will be uncomfortable and thus reacting accordingly? For her whole life, we have always said that it would be so much easier and more comfortable for her if we didn't have to feed her. And... the other sad part of all of this is that she wants to eat orally so badly... she loves to taste food and begs to eat when we do... but she cannot swallow. It's a cruel irony.
Then there are all of the changes that have occurred in her life... perhaps increased "gut" sensitivity is how her body is coping with all of the stressers. John's sporadic appearances over the last 6 months, her Papa has been gone since July, Gracie's nurse left in July, one of her home-hospital instructors stopped seeing her, she started school in August, she had surgery in August... these things are all BIG things and BIG changes in her life and it would certainly make sense if her body was reacting to them in this way.
So, between the obvious discomfort with her feeds and the behaviors she's exhibiting, it's incredibly difficult to feed her. One of her medical "team members" actually said to me last Friday, "She is tube fed, so you really can force-feed her if you need to." I was completely flabbergasted by this... I already feel like we are force-feeding her... and it's wrong on so many levels. There is real pain for her and I have to sit there and look into her eyes and make her deal with it... I am actually causing her pain by feeding her. No wonder she has behavioral responses when it's time to eat. If we continue on this path, we will lose her emotionally - - she will not trust us, she will "check out" of the world, I am sure of it. But on the flip side of that, I cannot begin to fathom what we will lose if we can't get this under control. Medically, if something were to come up for her, her little body is so underweight and malnourished that she has no reserves. I am terrified and so is John.
Monday, October 6, 2008
John's Assignment - A Migration of the Flock!
SOUTH LOS ANGELES
The Flock will be migrating south in November.
John did a ride along in Torrance (in what will be his office) on Saturday night and then drove home to get back to the Academy Sunday night. A whirlwind weekend for him. We were supposed to have been down there last week and over the weekend w/ John (my mom, the kids and I) to scout areas (neighborhoods, school districts, proximity to LA Children's and/or UCLA or Children's Hospital Orange County) but both of the little Swanns were sick and we couldn't travel.
Gracie narrowly missed a visit to the hospital last Sunday and Monday... her lungs sounded terrible and between the coughing and sneezing, I was constantly suctioning her trach, her mouth and her nose. Needless to say, she wasn't very fond of me for a couple of days... I was always "bugging" her. All the coughing wreaked havoc on her stomach and her gastritis flared up something terrible. She feels so much better now, thank goodness, and despite being very "junky" with her secretions, she is back to her little sassy self. I missed her!
Since Gracie was kind enough to "share" with her brother, Preston got the "ick," too, although his was mostly in his little nose - - which is now raw from Mommy wiping it all the time. Vitamin E oil works great to soothe, though, and he likes to have it rubbed on... thank goodness for small favors. He does NOT, however, like it when I use Gracie's suction to clean out his nose! It's SO worth the battle, though - - since he hasn't yet mastered the nose-blow, it's really a handy little tool to have! He also is cutting another molar and has a little fluid in one of his ears. The "great" thing was that he could tell me - he pointed to his ear and then signed & said "Ow." I immediately called the doctor and we went in to get his ear checked out... and got some pain relief drops.
I felt on the brink of getting completely nailed by the bug (as did my mom) but we managed to avoid getting the full blown flu like the kids. Now that everyone is on the mend, we are going to try and go down this week to find a place to live. I was originally thinking we wouldn't do this until after John graduates (due to the crazy timing) but with all of the logistics involved in moving (and moving Gracie, specifically), it would be easier to know where we will be landing.
So much to arrange for Miss G... medical supplies/equipment, private therapy services, school placement, home hospital instruction, a new IEP within 30 days of her placement in the district/county, a new Regional Center & caseworker, a new CCS caseworker, re-applying for CCS physical therapy, a new Medi-Cal caseworker, THIRTEEN NEW doctors and specialists... and the list goes on.
Since she just missed a week of school from being sick, I feel a bit guilty pulling her out again to go find a place to live. But when I look at that list, I realize that this is what's necessary... and if I don't make arrangements ahead of time, it will be Thanksgiving before she is placed anywhere in school... then it will be difficult to get things (especially an IEP) accomplished before the Christmas break and before you know it, it will be January. So... I am trying to get over the "pulling her out of school guilt!"
Wish us luck in our house hunt... we are picky... and since we will be keeping our house here and (hopefully) renting it out, we will be broke! NOT a good combination!!!
On the bright side (and it IS bright!!!):
We will be VERY close (perhaps even the very same neighborhood) as the Dodd family, our dear friends in CHARGE. Preston and Reuben are exactly one week apart and, I have a hunch, will be great pals! Gracie will LOVE the climate and be able to be outside more - - it won't be too cold or too hot (Goldilocks?!). I'm sure once Preston sees the beach, he will turn into a mini beach-bum! It will be an adventure... and we will make the most of it!
Odd Coincidence: John and I have always moved this time of year. We bought our first house together 10 years ago this month. We bought our current home 7 years ago this month - - the longest I've ever lived in a house. And now, we are moving again in the fall...
Friday, October 3, 2008
In loving memory of Lucas Weindorf
Our CHARGE community is mourning the loss of Lucas Weindorf who passed away yesterday, October 2, just shy of 17 months. He lived a very short, but immensely love-filled life. While we don't know the Weindorfs personally, we follow their journey through the Blogger network and CHARGE listserv. Their loss is unfathomable... and yet there is some peace to be found in the grief, knowing that he no longer suffers and no longer struggles. He is, to quote the family's post yesterday, "Resting in such sweet peace now and patty caking with the angels forever..."
Whether you pray, send positive thoughts or meditate... whatever your faith... please think of them as they bury their sweet son on Saturday and begin the healing process.
the Weindorfs held one in their arms.




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