Nursing Fail

So we've not had the best luck with nursing since we moved in July, 2012.  We continue to struggle to find the right fit for Gracie, for school and for our family.  That's a whole lot of "fitting" to deal with.  And, given that agencies don't pay homecare nurses well to begin with, the search becomes that more difficult as the pool of dedicated, qualified individuals gets smaller and smaller.  Add in the fact that we live a little isolated compared to the rest of the East Bay Area and it just narrows our options further.

We are on the hunt... again.  We hired a new nurse out of the slim pickings sent our way.  She shadowed Gracie and her current nurse at school for a total of 14 hours last week, moved out of the immediate area over the weekend and, today, officially quit by not showing up for her final day of shadowing before starting full time on Monday.  This means that Gracie's last day of school for an undetermined amount of time is tomorrow.  I am SO angry and frustrated... and loathe that this issue is out of my control.  Other than having every agency in our area (that we can use) on the hunt for a nurse, I can't do much else to solve this problem.  My sweet girl loves school.  This STINKS.

Ultimately, what needs to happen is the County or District need to hire Gracie a nurse directly and cut out the middle man of the agency.  This would increase the quality of the applicant tremendously as well as give the school district or county (or both) some sort of control over the situation.  They've never hired a nurse directly for a student; they've only funded the nursing through the agency.  The problem with that is the agency receives a huge fee per hour for the nurse while at school with Gracie but they do not pass that (or even a generous portion) down to the nurse.  Instead, they use the extra dollars to offset what they are losing on their MediCal patients.  This system is so broken and backwards... and that, clearly, is another post (or series of posts).

Fa la la la la, la la la la!

'Tis the season to be busy, Fa la la la la, la la la la!

This is the longest absence from the blog this whole year. Ugh! I am going to try to play catch-up, so scroll past this post to see a couple more! At some point, I might even cheat a bit and backdate my posts! Let's see if I can do a "nutshell" update... with pics to follow later.
(I'm never brief... who am I kidding?!)

- John had his first real vacation since April of 2008. Two full weeks - - with the way his schedule fell, he had 17 days off (though he did have court a few times and worked some overtime shifts). It was so very nice to have him around! Of course, he was off for 17 days and on day 18 (last Thursday afternoon), Gracie got the stomach flu (for the first time ever... and it was bad... poor baby. Preston had a head cold (no fever and acting fine, with the exception of taking a voluntary nap during the day!), so I had two kids at home who had to be separated. Poor Gracie was miserable beyond miserable and because I had to tend to her nearly constantly, Preston watched an obscene amount of TV. I'm happy to report that everyone is feeling much better. Preston, however, was not so happy about the sudden reduction in TV time!

- During John's vacation, we all (Sophie, too!) traveled north to Nana and Papa's for Thanksgiving. It was great fun... we got to spend time with them, had quick visits with friends, had a really nice Thanksgiving dinner and took the kids to the snow. Preston was really out of sorts without all of his own stuff and his "routine" at home, but as long as he was busy, he did okay... not great, though. Miss Gracie, on the other hand, was right at home at Nana and Papa's and didn't even bat an eye about taking off her clothes (even in the cold!) and settling in as if she were at home! In six days, we put 1544 miles on our vehicle.

- We went to the San Diego Zoo with our friends. It was cold (um... for San Diego... not by most people's standards of "cold"!). Despite the chill in the air and the pending rain, we had a great time. It wasn't crowded and a lot of the animals were active. Both kids loved it. Preston's favorites were the monkeys (shocker!) and the tigers (a mother and son who were playfully wrestling and running all around the multi-level quarters). Gracie's favorite was, without question, the hippos. We sat at the window below the water and watched them swim by. The first time one passed her, her eyes got very wide and she had this look like, "What the heck was that?!" After that, she sat mouth agape, still wide-eyed and signed for "more hippo" as the two huge hippos came by time and time again.

- We've been "decking the halls" - - Christmas tree up, mantle adorned, lights on the house, Christmas music on all the time (much to John's dismay, sometimes!), shopping (though not much mostly for the three toy drives and four food drives in which we participated!), wrapping presents... and more wrapping to come! I am happy to report that Miss Gracie has been loving the tree, spending hours under it going around and around to look at lights and ornaments. She has not attempted to eat a light bulb like last year! Preston walks around making-up his own Christmas carols by combining words from all the songs he's constantly hearing... too funny!

We've seen Santa several times around town at various parties and outings. We've not done the "formal" Santa pictures this year... jury is still out on that. I am having a hard time justifying waiting in the long line, not to mention the expense!

- "Big Red" our KitchenAid mixer has been getting a full workout, as has our oven! Preston and I baked cookies for the troops with the MOMS Club the first week in December and that was just the start. Since then, the mixer and oven have seen seven different cookie varieties and I can't even begin to tell you how many dozens of batches have been baked! I can tell you that I have had way to much of it myself... way too much, just ask my jeans!

- Gracie's DHOH program had a Christmas Performance on Thursday. It was so wonderful and heartwarming to see all the kids perform. The DHOH team, including administration, works tirelessly and with great passion to see that the kids in their program reach their fullest potential. They are an amazing group of people.

Sadly, my camera did not work well that day and, while I have pictures from after the show, most of the pictures taken during did not turn out because my flash wasn't working at a distance. The pictures are all black. I do have video footage and will try to put some of that together soon. I'm hoping that other parents and teachers will share what they took.

What I can tell you is that her team (and others who aren't "officially" part of her team) worked so hard to make sure she was a part of the show. They decorated her classroom seat with red fabric and built a bell around the back of it... and it had lights! It was amazing... and I cried when I saw it. She looked so stinkin' cute sitting up there! More than that, though, I was blown away by their efforts to include her and do something special. In true Gracie style, she decided it was not the time to cooperate, so she did not do any of the practiced signs or bell ringing during the show. Ha... not a shocker! And, while it would have been fun to see her at her "best" up there, we were just so grateful that she was there! It was a huge milestone.
Such amazing progress... in school full-time, five days a week. Who would have ever thought?!

- On Friday evening, Preston's preschool had their Christmas Performance. Oh. My. Goodness! So adorable! His class is 2-3 year-olds. They sang "Jingle Bells" as a class, the Bible Study participants sang (and signed!) "Let it Shine" and the Spanish Students sang, "Como te Llamas". Some of the kids were completely overwhelmed by all the families and cameras in their faces. Others, like our son, were totally unphased and just did their thing! Preston had so much fun and I don't even think he could hear half of the class sobbing (which was really cute, too!).

Thankfully, Gracie wasn't too stressed by the whole thing and John was able to get off work early and see the show. I got some cute, though partially obstructed, video. At one point Preston spotted John standing in the back holding Gracie and shouted, "Hi, Daddy!" He signed "I love you" to him, too! At the end, he bowed a couple of times while saying, "Thank you, thank you!" and then looked up at John, gave a thumbs-up and said, "I did it!"
Soooo cute and that's not because I am biased! It was just so cute!

I am hoping that some of the other parents (taller ones :-) with better location in the room) got better pictures/footage! Again, our camera is not flashing properly from a distance, so turning the flash off meant that the pics are pretty grainy.

After the show, the kids were invited on the playground where there was a petting zoo set-up. So sweet of the directors of the school to put that together for the kids! They all loved it!

- It's now Christmas vacation for Gracie (She only missed three days of school this trimester. One was because of a long appointment. Considering her health and history, that is nothing short of amazing!) Preston is off school starting the 23rd. And I am left wondering how I will entertain them both, especially once Christmas has passed, Nana & Papa go home and John is at work... ugh! It's only day one... and already I can hear the lyrics from "It's Beginning to Look A Lot Like Christmas."
You know the ones...
"... And mom and dad can hardly wait for school to start again!"

So... there's the "nutshell"... pics to follow... hopefully!

Medical This 'n That

CHOC Rocks & Pop Rocks
Gracie's back at VitalStim! Yay! This wonderful news brought to you, not by my efforts battling insurance, but by the "powers that be" at CHOC and the (what I can only imagine to be) tireless efforts of the therapists in the Rehab department. As it turns out, many patients were having difficulty getting their insurance to cover the electrodes that are used as part of the therapy. (While the electric stimulation is part of the treatment, there are several modalities of treatment occurring at the same time - - all of that was covered, just not the electrodes themselves because the "stim" is considered experimental or investigational.) Several weeks ago (yes... so behind on updates!) I received a call from one of Gracie's therapists telling me that CHOC had made a decision (following the efforts of some of the therapists to find a solution) to cover the electrodes so that these patients can have access to the therapy. Problem solved - - CHOC Rocks!

A few weeks ago(er... several weeks ago), Gracie experienced Pop Rocks at VitalStim! How cool is that?! Never in a million years would I have thought that Miss Gracie would have that opportunity (I didn't even know they still made them, but even if I did know, I wouldn't have ever thought she could have them!)
When her therapist, Ally, placed a piece on her tongue, Gracie got a look on her face like, "What is that...? And, can I have more?!" Talk about a multi-sensory experience! I had a few, too, and was instantly transported to my childhood. Preston was with us, so he got to try a little taste, as well. Just like Gracie, he wanted more!

October Was A Rough Month... So I Made Some Changes
October proved to be a rocky month for Miss Gracie. I keep a daily log of her calorie and volume intake as well as notes regarding headaches, retching, etc. Not once during the month did she meet her full caloric goal and she had more "rough" days/nights than not. Not good. She saw her GI doctor on the 5th and she made some dosage changes in her meds in the hopes of helping her cope with feedings better. If anything, the exact opposite seemed to have occurred. (In fact, my fuller-faced girl - - as seen in her school picture - - has dropped over a pound since it was taken.) Because it appears that her feeding trends worsened with the dosage change, I have dropped the meds back down to the previous dosage to see if that is the culprit. Interestingly enough, it was also her "off" month of her inhaled antibiotic. Not convinced that has anything to do with this (it really shouldn't, in theory), but will certainly keep an eye on next month's patterns just in case.
She missed school the Monday after Halloween (even though her fever had been gone for 24 hours) because she was coughing so hard and requiring excessive suctioning.
Since I reduced her dosage (and since she's been back on her inhaled antibiotic), she has been having much better days. Time will tell as I continue the "experiment."
(Updated following the experiment... she's still much better than she was in October and she's off of the inhaled antibiotic again.)

Behavioral Pediatrician
We finally saw the behavioral pediatrician in October. Our main objective was to discuss the behaviors we have been calling "OCD" - - stripping her clothes off and refusing to wear any at home, repeatedly wanting lights turned on and off... no rhyme or reason (in our minds), wanting the TV on or off, wanting certain items removed from her sight line (again, in our minds, no rhyme or reason), always putting all of her clothes under the couch when she undresses... the list goes on and on. School hasn't reported any of these behaviors, but often when she comes home, she comes "unglued" and has many requests (demands!). After talking it out with the doctor (who totally passed the "coffee test," Hannah, she commented that it sounded much more sensory than obsessive. It was like getting smacked upside the head... I know to always consider sensory issues first, but somehow, had gotten wrapped up in the repetitive nature of the behavior that I forgot to consider the source of the behavior. Uh... DUH! Experts (David Brown) have been to our home, met Gracie multiple times and we have discussed these very issues on a smaller level. She's older now and the behaviors have evolved, but so has her level of input during the day. This all coincides with increased activity level (school every day... therapy several times a week, etc.), so it's no wonder that her coping mechanisms (behaviors) have changed. I shared the conversation with the doctor with Gracie's team at school and we made a plan for more proprioceptive input and a more varied and rich "sensory diet" than what she'd been getting. So far, so good. Although, she still won't wear clothes at home... even when it's freezing cold outside! She can still wiggle her way out of every contraption we've tried, so for now, we are letting it go. She has very little control in her life... so if this one thing (at home only!) makes her happy, then what's the harm?

Cardiology
Gracie saw the cardiologist on Veteran's Day. Since she's likely getting closer to needing her mitral valve replaced, he decided he wanted to get a better picture of what everything looks like - - measurements, pressures, etc. - - so he has scheduled a heart catheterization for January 19th. The other issue is that Gracie's pacemaker generator is using the battery far faster than anticipated at her replacement surgery in August 2008 - - and faster, again, than what was indicated at the last pacemaker interrogation. This is because she is completely dependent on it and, most likely, because scar tissue has continued to form around the external leads on her heart. Because she is so small, her pacemaker is in her lower left side rather than implanted in her heart. Thus, the leads (wires) that run from the pacemaker to her heart attach on the outside of her heart rather than the inside. This, by nature of the design, is less efficient than the pacemaker that is implanted directly in the heart. The catheterization will give a better picture of the tissue around those leads, as well.

We are nervous... it's "routine," but nothing is ever "routine" when it comes to your child. And, though we've experienced so many procedures and surgeries (including multiple open heart) with Gracie, this is her first time in the cath lab.

Four weeks worth of Foto Friday - The Long Lost Flock

Returning after yet another extended break in blogging. Super busy - - as usual - - but more tired and foggy brained. We have a lot of "stuff" on our minds and hearts (on top of the usual - - and too much to delve into here) and it has been making the days seem even longer and, thus, the fatigue that is routine somehow feels much heavier.

I should probably start where I left off - - and that was when everyone was sick. It turned around quickly for Preston. For Gracie, it took some weird twists and turns, leaving me to wonder if she had her own "ick" vs. the virus that the rest of us shared. And, to add some "excitement" to our days, she has been having (about every two weeks) a fever that lasts a handful of hours and then is just gone... poof. Each time, the fever goes up a bit and this past Saturday she had one that was as high as 104.4 (her baseline is just under 100) and made her very itchy - - not surprising, due to the fact that she was burning up. Then, around 2:30 in the morning, it broke completely and she was back to normal. We aren't certain of the cause, but my gut is telling me that it's a neurological thing, rather than an infection. Needless to say we are taking note of everything to share with the doctors. Anyway, she's back to "normal" with the exception of the fever thing and has had some really good days this week.

I finally went to the doctor for my persistent cough and was given an inhaler and told to take allergy meds again. So far, not much help. The cough is an annoying tickle that makes me grunt and groan if I try to stifle it... very attractive. Otherwise, I feel fine. As for John, he was the luckiest of all of us and was spared the horrible ick, only having gotten a very mild version. At least someone was spared!

Gracie's summer school ended on Wednesday - - she doesn't "get" it yet that she won't be going back to school for a month. I am in panic mode trying to think of ways to spice up my "Mommy School" routine, as she had grown quite bored with me by the time she finally started school here in April! Thankfully, her wonderful aid sent home some of her materials so that I can keep up with some of the things she's been working on. And, even though I am completely bummed that summer school is over (mostly because it's so hard to help Gracie understand why she's not going when she's begging to go in the mornings!), I am so grateful that during this insane economy and horrible budget crisis, there was a five-week summer program for her to attend four days a week for just under 4 hours. Very grateful.

The bus situation eventually worked out, thanks to the dedication of her aid and the RN at the school. But we aren't sure what will happen in the fall. Both individuals, sadly... very sadly... might not be working in the same capacity next year due to budget cuts. If this is the case, especially with her aid, then the bus will not be an option until I am comfortable (and Gracie's comfortable) with her new aid. In the meantime, I am trying not to think about it... as losing her health aid (who also serves as her instructional aid and who has dedicated herself to taking more ASL classes aside from what the school provides her...) would be tragic at this juncture. She has earned Gracie's trust and they have built a really good rapport. Her aid understands her, can read her, respects her health issues and her chronic discomfort, yet pushes her whenever possible. And, she's not afraid to ask me questions to make sure she's picking up on Gracie's cues correctly. Losing her would be tragic... a huge adjustment... like taking steps backward and starting the transition to school all over again.

We have had some fun amidst the "heavy fog" I mentioned before, and that is what I'll share now as I ease back into bloggerland and catch up on four weeks of missed "Foto Fridays!"

Nana and Papa's Visit
Nana and Papa visited us the second week of July.
Papa is finally home from his year-long service in Afghanistan.
(It's hard to see in the dark picture, but the kids colored on the banner we hung for Papa!)
It was wonderful seeing them even though we were all still feeling a bit funky.
We just hung out - - had breakfast at the beach and let Preston play while Gracie was at school, they went to Gracie's therapy to watch the "walking wonder" in person, they went to TOTnastics with Preston to watch the "climbing, somersaulting, head standing, jumping, balancing wonder," they went on walks with us in the evenings. It was so nice to just "be" with them.
(As a side note, Preston actually runs the entire "walk" most nights... the longest was 1 1/4 miles!!! I clocked it the next day! I don't have that kind of stamina!)

One day after Gracie got home from school, Papa took us on the Joint Forces Training Base so the kids could look at the old helicopters. Preston LOVED every minute of that!

Preston doin' his thing at TOTnastics

Gracie showing off her triceps! Ha!
She's actually "sneaking" her way back down from sitting up!

Chop Those Locks
The kids got haircuts again... Preston twice. John took him to a butcher barber, who was supposed to give him a trim in the front and shorten the back a bit. Instead, he chopped-off his hair - - DRY! It was so uneven and horrible... and I will admit, without shame, that I did shed a little mama-tear over it. Granted, I know it's just hair, but I also knew that if Preston had gotten ahold of the scissors himself, he'd have done a better job! Anyway, I let it grow out for two weeks, and then Nicole (Gracie's nurse on Fridays) helped me take both kids in for proper cuts.
And, just like I shared back in the spring, my girl is such a girl! She loved every minute of being pampered! Nicole and I were cracking up at her!

Sigh... I just adore her expression as she checks herself out in the mirror!

Little Boy of Summer


Snail Mail - A parcel of fun from dear friends
My long-time, dear friend, Becky, and her two adorable daughters, Abby and Emma, sent Gracie and Preston a package of fun. They loved opening it... and they really loved what they found inside! :-)
For Gracie, Glitter Lava... slimy, squishy and oh-so-much fun!
For Preston, a Curious George coloring book and Caillou computer game!
And, special, sweet notes from Auntie Becky! :-) Thank you!!!

Gracie did share with Preston, although he didn't dive right in the way she did!
It's hard to believe that just last year we had an entire goal written for this kiddo to tolerate five novel sensory tasks!

He loves coloring - - for about five minutes!
He's all about sharpening the crayons or organizing them in the box!
He can't decide if he's a lefty or righty! I don't care either way, but I wish he'd figure out his preference soon! He bats, throws and eats better lefty... we'll see!

Numbers

1: The number of teeth Gracie has lost (or that was pulled because it was super loose!) this week.

4: The number of new(ish) phrases that Preston is saying that really crack me up. These are the results of watching the NBA playoffs, the US Open and hitting balls off his T in the backyard.
"Yay, made it! Right on!" (Said with two enthusiastic thumbs up!)
"Awww, almost! Try again!"
"Missed it! No hoop"
"Uh-oh, I'll get it, Mama!"

17: The number of years since I have felt this bad from a cold... I have a wicked sore throat, deep cough, low grade fever and scratchy man-like voice right now. I just hope that no one else in the house gets it.

23: The number of times (from her waking until she finally went to sleep late at night) I re-diapered and dressed my daughter on Monday because she insists on taking off everything. (And, no, I am not exaggerating.)
Also the number of times I felt like I was going to have a nervous breakdown.

6: The number of times I cleaned up "potty drama" due to the fact that my little exhibitionist feels the need to go the minute she's diaperless. Ugh.

3: The number of diaper pins now holding her shirt to her shorts so that she can't randomly undress.

4: The number of times she has, so far, outsmarted the pin idea and pulled her arms through her shirt and then pulled (stretched!) the neck of her shirt down to her waist and shimmied out of both shirt and shorts! Can't ever accuse her of being undetermined.

14: The number of meds (not number of doses) that Gracie is currently on. Good grief.

2: The average number of baths that Gracie gets in a day.
I joke about her being Miss OCD and fixating on a bath, but the truth is this has become a huge issue. She absolutely insists on getting in the tub. Once she's in, even if for just five minutes, she's fine after, but then an hour or two later starts asking again. We have decided (for now) to give in to the request if she truly cannot be redirected. (I have re-directed her right now by letting her lay across my lap while I type. She is scrolling through a slideshow on my cell phone!) Anyway, my theory is she is getting input from the water that she can't get from other types of stimulus, like brushing or joint compressions. I'll probably never know... but will definitely be bringing it up at our appointment with the Behavioral Pediatrician this summer... along with all the other obsessive behaviors that are getting worse by the day. (I also wonder if her new meds to help with her pain association during feedings are contributing to her increased OCD and anxiety.)

10 or 11: The number (age in years) that we should expect Gracie to need spine surgery. YAY!!! Great news! We saw the new orthopaedist on Tuesday (Hannah, he totally passes the coffee test!) and he feels that despite the severity of her curve and the obliquity in her pelvis when she stands and walks, Gracie doesn't need surgical intervention at this time (provided that everything progresses slowly and her lung capacity is not further compromised). He also stated that she doesn't need any kind of bracing for her scoliosis or her legs, as he feels that more than benefit her, these things would inhibit her muscle development and make her more apt to give-up working so hard on walking and standing... and she is, indeed, working hard!

3: The number of "catch-up posts" that I've started and not yet published - - one of which is about all of Gracie's hard work at therapy! Despite all of the obsessive behavior, there is a lot of good happening, and that is why I haven't yet become certifiable!

LONG Catch-Up: Potty Patrol, Birthday Boy, Humbled Thumbs, IEP, Outpatient Surgery

So it's been a while since I've posted... three words: busy, madness, exhausted!
I had been letting myself feel guilty about not posting on our blog, but since it's my blog and our life dictates how I spend my time, I decided to let that piece of guilt go! I did, however, miss so much that was going on with my blogger friends and 'family' - - some of it not so good and some of it so joyous and wonderful - - and am definitely feeling guilty about that.

Besides being a way for me to "journal" our life and keep a virtual scrapbook, my blogger network has become a wonderful support system and lifeline. Thanks to everyone who emailed, texted and called to check on the Flock... your concern is so sweet and really touched our hearts.

Now... on to business! I last posted on Preston's birthday... nearly three weeks ago. The day before his birthday was a pretty dramatic and somewhat traumatic day...

Potty Drama

I took Gracie to school, ran some errands with Preston, took him to "TOTnastics," came home to pick up a few things and meet the nurse that we have on Fridays (we only have nursing on Fridays...). Our plan had been to go pick Gracie up and head over to a regional park that we've yet to explore. When I unlocked the door, I immediately knew that Sophie (our beloved dog) had been naughty. I typically don't leave her in the house during the day, but there were people coming to look at some work that the landlords were having done and I didn't want her to be in the backyard. Anyway, I could smell the problem before I actually saw it. I'll just say this... when I walked into Gracie's room I literally screamed. Nicole, Gracie's nurse, thought I'd lost my mind. Then she saw it, too... the very light colored carpet in my sweet daughter's room looked more like a leopard print and smelled like a sewage plant. Get the picture? It was obvious she hadn't really been naughty... she was super sick... and it was horrendous. HORRENDOUS.

Needless to say, the park plans were scrapped and the moment we got back to the house after picking Gracie up, I started calling carpet cleaning companies to see who could come out on a Friday afternoon. Preston, thankfully, had fallen asleep in the car and once in his room, was oblivious to the whole situation for a couple of hours. Nicole kept Gracie busy while I spent two hours in her room trying to get a jumpstart on the massive clean-up. I found a company that could come out, but not knowing what time they'd actually arrive, I just couldn't let it all sit.

Since the whole house was due for a cleaning, I took the opportunity to have it all done in one shot. That turned out to be a huge mistake. Our old house had mostly hardwood, but I had the carpeted areas cleaned often and knew what to expect in the way of drying time. This company told me the same things... safe to walk on immediately, completely dry within four hours. Um... not so much. Not even dry 40 hours later. It was a fiasco. Imagine my daughter trying to scoot around on wet carpets... she is a little (a lot) compulsive about things, too... so keeping her on a Neat Sheet was out of the question... she wanted to check out the carpet. And if she laid on it for thirty seconds, I could literally wring out her clothes. She wouldn't sit in any of her chairs once she knew the floor was wet. Ugh. Despite my complaints and threats to cancel payment, the company wouldn't come back out to try and get out the excess water. Nor did they ever call me back on Saturday as I was promised. Meanwhile, I was stuck with sopping wet floors. We were up so late... we used our shop vac to try and suck up water, John went to the grocery store and rented a Rug Doctor, we had all the windows open and fans blowing... it was a wet mess.

Back to Sophie... poor doggie. She's our "firstborn" and we were quite concerned... it was a lot of diarrhea... A LOT. Something was obviously very wrong. The only thing that gave us a bit of comfort was that she still wanted to eat and drink. This, however, was not good for me. That meant she got sick... over and over. I spent the next SIX nights with her sleeping in the kitchen and me "sleeping" on the couch (in between running back and forth to suction Gracie) so I could let her out every 45 minutes. ARE YOU KIDDING ME? THAT is dog love. (She's 12 years old... it's too cold for her old joints to sleep outside and regardless of the temperature, she's always slept inside... outside at night would certainly have caused neighborhood disturbance in the way of howling or barking.) If I didn't hear her quiet pleas in the wee hours of the night (which at one point every night for six nights, I didn't) then she'd go all over my kitchen. I spent every morning for six mornings mopping, scrubbing grout and disinfecting my kitchen floor. Every morning... for six mornings. Because of the bout with doggie dysentery, I couldn't let the kids in the backyard... there's no way to protect them from that mess. And as luck would have it, this started on day three of John's 8-day stretch at work. So, I couldn't even get her into the vet with both kids in tow, it was impossible. Because she was eating and drinking, we decided to wait it out and hope that she had a bug of some sort. Those first few days, though, we were incredibly worried and even had to start having "the talk" about how much is too much for her to go through. Thankfully, she is fully recovered. But that was just the start of our potty drama...

Gracie has some "habits" that are a little less than ladylike... and one of them is to strip naked at the drop of a hat when she is ready for a bath. Thankfully, she only does this at home because she knows that is where bathtime occurs. Thank goodness for small favors! It doesn't matter what the time of day is... if she feels that it's bathtime, then she will get naked. You can put her clothes back on and tell her "no" but she will cry and kick and fight... and take them off again. (She also strips naked in the morning if she's awake for more than a minute or two... to0 long for Princess Gracie to be waiting to get dressed!) Inevitably, the moment she's naked, she feels the need to "go." I don't know if it's the fresh air hitting her nether region that gives her the urge, or if it's intentional. It's never much, so I'd like to think it's not intentional, but any amount is too much to have to deal with when she's begging for a bath and Preston is thinking it's pretty funny that she's naked and decides to strip his diaper off and go, too.

I've pretty much curbed his behavior. He gets that his sister does things that he's not supposed to do. He knows that what she's doing is naughty and I think he even understands the fact that his naughty behavior has far different consequences than hers. Nevertheless, this all started in the days that Sophie was in the midst of her illness and I was at my wits end. It was not pretty... on so many levels! For six days, no matter how much I scrubbed my house or myself, I never felt clean. As Preston would say, "Ewww, yuck!"

Birthday Boy

Despite the fact that our house was quite soggy and the backyard was off limits, my little man managed to have a very fun 2nd birthday. He helped me make his cake... he poured, mixed, tasted cake batter even though I told him it wasn't yummy until it's baked, did dishes, licked spatulas, licked the beaters, shared with his sister, ate way too much frosting and loved every minute of it.

Humbled Thumbs

A reason that I've been unreachable by cell phone and text is that we got new cell phones - - touch screen Blackberrys - - and while the whole idea of them is very cool, using them has not been, at least not for me. Turns out my previously speedy thumbs are now useless - - they are too chubby for the keyboard and I keep hitting the wrong keys. I never really thought my thumb tips were all that fat, so this has been quite humbling for my opposable digits! For a good ten days I played with that stupid phone trying to get the hang of it, all the while typing a total mess of a text message and not making any sense. One sentence was taking me five minutes. We got them because John's phone went kaput and the Blackberrys are buy one get one free right now. We are (or at least he is) trying to bring me out of the dark ages. I still carry a very fat, overloaded daytimer that holds so much important information that I am convinced the earth would literally stop rotating if I were to lose it. It weighs down my purse and takes up way too much room... but I haven't been able to part with it. So far, like with the palm pilot and other "toys" I've tried over the years, I have not yet been converted. To add insult to injury, neither of our phones are connecting to any of our bluetooth devices. I have a Jabra in the car... which I LOVE... but it's been sitting on my visor, so sad and neglected! Clearly, the issue is not with our phones or the devices, it's all operator error. We just haven't had the time to solve the problem. Grrr.

IEP

As for Miss Gracie - - things in her world have been very busy. We had her IEP on Wednesday of last week. Thankfully, my mom came down to give us a hand so that John could attend with me this time. She was also here to help us on Thursday because Gracie had outpatient surgery and procedures at the hospital and we both really wanted to be there.

So... the IEP - - Nana to the rescue. Turned out that John, while he did get the day off, had court for a ticket he'd issued and couldn't attend the meeting... not really a day off. Just our luck. It went well... her services won't change from what was established in the initial IEP 30 days ago, but for the assessment and recommendation that's pending from the Adaptive PE Coach. Her goals have been completely re-written and while I feel that the goals themselves are good, I am still waiting to talk to her teacher a bit more for some clarification on measurements of success and for correction to the document itself regarding present levels. I will explain more about this once I am able to have a conversation with her teacher. I can't mention the IEP without shouting a very public, loud and heartfelt "Thank You" to Leslie, Katie's mom, for providing me with so much valuable and helpful information from Katie's IEPs and evaluations. Gracie and Katie are so similar - - CHARGE Sisters, if you will - - and Leslie's willingness to share information has been of phenomenal help to me. Thank you! :-)

Outpatient Surgery

Is it terrible to say that it wasn't a big deal in the world of Gracie and surgeries? That is not to say that anesthesia isn't scary and that the discomfort and loopiness she experienced wasn't a big deal... it was, of course. But as far as "hospital time" goes, this was the way to do it. In at 5am, out by 9ish. She had a bronchoscopy, an endoscopy with biopsy and a new set of tubes in her ears.

It was really strange to not know a soul at the hospital, to not know where we were once inside, not know the routine. Quite unsettling for two very "hospital seasoned" parents. Thankfully, Gracie was happy as a clam the entire time we waited in the ambulatory care unit. She hung out, watched some Disney Channel, signed her ABC's and then smiled as they wheeled her into the OR. She wasn't so thrilled when she woke-up... rightfully so. But, once back in the car, she was loopy, but happy.

The day was mixed... good and bad results. The bad was not a surprise, just confirmation to the doctors that I am not crazy and that what I have been telling them about her (because some doctors STILL haven't gotten records down here... unacceptable) is, in fact, the reality.

The ENT did her tubes and the bronchoscopy. The bronch showed (by our estimation in comparing our photos of previous bronchs) a fairly happy airway - - the least red we've ever seen, actually. This is excellent news. There are structural anomalies, some that are quite interesting, but none that are compromising her airway and none that require surgical intervention - - aside from the granulation tissue he removed during the bronch. It's a beautiful airway that would work perfectly without the trach... but for the fact that she doesn't swallow at all.

There is a picture from the procedure that is looking down at her carina (the top of the area that "bridges" where the lungs start) and sitting on top of the carina and rolling into her lungs was a giant pool of bubbly saliva. Without the trach, Gracie would drown. Period. If we can't rehab her swallow enough to manage her secretions, she'll never get it out. Not surprising news... not new news, but still so sobering each time it's said.

As for the tubes in her ears... this one was up for debate until the day of surgery. We wavered back and forth because the tubes make Gracie crazy. Her left ear drains constantly and the feeling makes her so irritable. She's so "open" structurally on that side that her saliva actually drains out her left ear... thus it's no wonder that without tubes in her ears, she constantly has fluid in them. We had the ENT put in temporary tubes thinking that if it is too unbearable for her, we will have to take them out or hope they come out on there own quickly. We wavered also because of the fact that she's consistently testing with a profound loss in both ears now. Behaviorally, we haven't seen much response to sound in a while and when we do, it's to things that are incredibly loud or could be things she's feeling rather than hearing. The tubes are there to protect her eardrums from damage... but if she's deaf, what are we really protecting? Constant ear infections haven't plagued her... constant fluid has, though. It's a true catch 22... and we chose (since she was going under no matter what) to give it one more "go round" with the tubes. The (very) unfortunate thing regarding the tubes is that because of the drainage issue, Gracie can't tolerate her BTEs (Behind the Ear Hearing Aids). We've been trying to get her to wear these instead of her BC (Bone Conduction aid) as they provide more appropriate amplification, but it's been a struggle. If she'd have taken to those aids and seemed to be getting any benefit, then we'd have skipped the tubes altogether. It's just unfortunate that we can't really work on wearing those aids now.

The endoscopy was the thing we were most concerned about... the GI team needs to get a good picture of the status of her "gut" and they did. Hearing me talk about her gastritis and her profoundly negative reactions to feedings didn't really sink in until the new GI doc got a look-see for herself. Like her airway, her tummy was not as horribly red as it's been in the past. That's not to say that it wasn't red and bleeding - - it was. But it actually looked better... until she showed us the rest of the pictures. She blew a little air onto the surface of her stomach lining, went in further to get more views and when the camera came back to the stomach, it was horribly raw and bleeding... just from the air. Thus, you can only imagine what formula and meds do to it.

She spent several minutes going over everything with us and then discussing the things we've attempted in the past. I confessed that I'd been skipping her Prevacid because she seems to be uncomfortable when she gets it... it's like the little granules irritate her very raw stomach. She agreed with me and formally discontinued it. We added Nortriptlyne to Gracie's long list of daily meds in the hopes that it would help block out the pain she associates with feeds. So far, we've not noticed a big difference. We'll be patient. If by the weekend, we've not noticed a change, we are supposed to increase to twice a day. If that doesn't work, then she wrote for another medication to be added. If that doesn't work, we will go back to the G-J tube (bypassing her stomach entirely by feeding directly into her jejunum). She's had that tube before, it wasn't any better, really. And, while we're not keen on pumping her full of meds and making her groggy or foggy, we don't have much choice in the matter... she has to eat... she has to gain weight and be able to keep it on. Period. "Failure to thrive" doesn't begin to define how dire this situation continues to be for her.

The good news is that despite being rail thin, having a raw tummy and a drainy left ear, Gracie continues to get more comfortable at school. She looks forward to getting there and the minute I get her out of the car and into her KidKart (adaptive wheelchair/stroller), she is ready to leave me and get inside! I love that! Next week, we bump her days at school from three days to four! Yay... progress!

It figures

Doesn't it just figure...

• that after spending months working on the right school placement for Gracie and finally, after weeks of jumping through insurance hoops, getting her nursing approved and having a nurse start part-time (all at the requirement of the school), the district decides to change the structure of the program and eliminate the need/ability for her to have her private-duty nurse attend school with her.

Yep, that's right. The dreaded process of establishing trust, rapport and a routine of responsibilities with a nurse began the first week of March. The very next week, I was informed that due to the needs of many other students in the SELPA (Special Education Local Plan Area), they were working on restructuring the program at the school to include an on-site RN and health aides instead of students attending with their private nurses. While this is a great development for the community as a whole (due to the numerous deaf/hard of hearing students with multiple medical needs and multiple disabilities), it was kind of like having the rug pulled out from under me (and the new nurse who was hired for certain hours and to eventually go to school with Gracie).

I had finally given in to the idea of having help again and had settled with it easier knowing that some of the hours would be with Gracie at school instead of all in our home. Now the only way to utilize those hours is to have someone work an 8-hour day after school. I am just not sure that I want to have someone in our home until 9 or 10 pm. And, there aren't agencies/nurses, for the most part, who staff four-hour shifts. Ugh.

Doesn't it just figure...

• that when many of the kinks get worked out for school placement, new kinks are made. AND... that the regular school year will have less than two months left once Gracie is able to start. She has, essentially, lost the entire year. I think next year will be a repeat year of "kindergarten" for her.

Doesn't it just figure...

• that when my husband went out of town for two days (work related) on Friday afternoon, both kids woke-up in the middle of the night with high fevers and congestion. Gracie slept only about an hour on Friday night. Preston's fever was as high as 103.2 without constant Tylenol and just broke on Tuesday night. Gracie was down for the count until Saturday evening, rallied a bit and then had a rough night Saturday. By Sunday at noon, she was completely back to herself. Preston, while fevery and stuffy, was happy and playful as long as the Tylenol was on board.

Doesn't it just figure...

• that the night that John got home (Sunday), and offered to be in charge of Gracie while I attempted some rest, Gracie had a six-hour stretch of sleep. And doesn't it just figure that Preston did not!

Doesn't it just figure...

• that on Tuesday night Gracie had the best night sleep she's had in months and I had to wake her from this peaceful slumber at 6:30 am to prepare to leave for the hospital. She had (finally) fallen asleep at 12am.

Doesn't it just figure...

• that on the same day (Wednesday) that Gracie needed to be at the hospital at 8am for a couple of tests (Upper GI and Swallow Study... don't get me started on this) that Preston wakes up with a more obvious rash than the splotchiness from the night before. After I returned home with Gracie, I left her in her new nurse's care, sent a very tired, graveyard-shift working husband to bed and got Preston in the car to drive to the pediatrician's (back down to the hospital area) and have his rash checked-out... just in case.

He received his postponed dose of MMR (the "12 month" dose) last Wednesday (the 11th), and even though I was fairly certain he was fine and even mentioned Roseola to John and Gracie's nurse, I wanted him to be checked out. He is fine... and likely has Roseola - - as a case of "mock measles" would just now be showing-up rather than ending. Anyway, he's fine and it was good for his pediatrician to see him without his sister present... he was far less stressed and much more "himself."

Doesn't it just figure...

• that when the kids seemed to be on the mend from their "ick," I felt it coming on. I have been drinking fluids like crazy. taking medicine and trying to deny it, but I have the stuffy nose, headache and sore throat to prove that I am losing the fight. With the schedule being kept around here, though, there is no time for this mommy to be down for the count.

I did, however, take an hour on Sunday when John got home and to get a LONG overdue pedicure... the first in almost a year. While it was rushed (I arrived less than an hour before closing), it was exactly what I needed to get through the rest of the day/night. It was the first hour of true "me" time since we moved.

Doesn't it just "fiscally" figure...

• That in the same month that our old house finally is rented, there is a problem with the garage doors that will eat up all of the rental income for the month. And, doesn't it also figure that in the same month our old washer and dryer finally did their last loads, the lease on our family car was up.

The good news... the house is rented. Other good news... "June Cleaver" and "Harriet Nelson" (my new washer and dryer) are amazing "housewives" and do fabulously large, quick and super clean loads of laundry. The only bummer with them is that their price didn't include folding and putting away the clothes!

A Little Medical Update:

• Gracie's current weight is 25lbs... up from 23... and hanging in at 25lbs despite the recent "ick." She is slowly closing the gap on her brother - - he's got her by one pound right now.
• Saw the cardiologist, who unlike the GI doctor, took the time to listen to me, spent 90 minutes with us doing his own pacer check, echo, and additional pacer checks to observe Gracie's whole body twitching with each beat of her heart. Turns out, despite the GI doctor telling me I was wrong, the cardiologist confirmed that Gracie is most definitely "diaphragmatically pacing." In a nutshell, one of her pacemaker leads is too close to her diaphragm and for a good portion of the day, her diaphragm is stimulated by the current going through that lead, which causes her whole body to "pulse." He made several adjustments to her pacemaker settings in the hopes of alleviating this discomfort, but could only do so much to keep her settings within safe ranges as she's completely dependent. If we can't keep her comfortable enough, the only other option is surgery to move the lead... that's full open-heart surgery... so we are trying EVERYTHING else first. The good news in all this is: he's proactive, listens to me and he truly cares about Gracie. While this issue doesn't explain or solve her numerous GI/neuro issues, it definitely helps to explain the extra difficulty with feedings since her surgery last August. Slowly, but surely, we are getting back those five pounds.
• Saw the new opthamologist... she's nice.
• Saw the new dentist... he's SUPER nice!
• Received her new PT/OT clinic recommendations... each therapy... TWICE a week. While that is a lot... A LOT... the fact that they've made a recommendation like that rather recommending "consultation" proves the need for the services both in clinic and in her educational setting. I have no idea how much she'll actually tolerate, but am thrilled with the aggressive recommendation. At least I know that part of her team wants to push her to reach her full potential.

Last 10 days... Next 10 days

In the last 10 days we:

• Visited the ENT - - Gracie still has fluid in her ears... as usual. Not infected... just fluid. Since the doctor is new to Gracie, he wanted to try one more antibiotic and then threatened putting tubes back in. I tried explaining that this is her anatomy... what's in her ears is what's in her upper airway. She's far more comfortable without the tubes and constant drainage and tolerates her bone conduction aid far better (we saw a marked improvement the very next day following her tube removal!). We'll see. This may take a lot of convincing. He also wants to have a look-see at her airway (so does her pulmonologist) so he can form his own opinions about what kind of reconstruction is still required.
• Saw GI again... even more unimpressed with him this time. I have already requested to see a different doctor next time - preferably the head of the department. At this visit, I was once again told that she needs more calories. This time, I actually rolled my eyes at him and said something to the effect of, "Look, I am a fairly intelligent person... I get that. I need you, as her doctor, to help us find out why it's so difficult to feed her... why is she in pain, why does she vomit, why does her pacemaker seem to want to jump out of her side after two ounces? Why can I pump her full calories for several days and then she hits a wall where she just can't seem to take any more for days on end? There are a million questions that I need answered and I don't need you to tell me that she needs more calories." I am quite certain he'll be thrilled not to see us again! He did order a bevy of tests: upper GI, swallow study (this is a waste...), Gastric Emptying - - she's has all of these MULTIPLE times, but everyone wants their own reports.
• Had our first visit with the new Neurologist: LOVE the new doctor! Only need to see her every four months or so... wish she was also a GI doc! She gave me a couple of referrals for Behavioral Pediatricians and Endocrinologists... I have yet to call and make those appointments.
• Saw the Pulmonologist: He ordered a sweat test to rule out Cystic Fibrosis... only because of the multiple GI issues and constant secretions. It's been mentioned a handful of times by other physicians over the last 18 months, but no one ever ordered it. Neither the doctor, or I, feel that this is a possibility, but since there are a lot of similarities with Gracie's symptoms, he would feel better ruling it out. We see him again this Thursday as a follow-up for her previous respiratory infection and to discuss release to school (once nursing is established) and release back to the therapy clinics.
• Had the SELPA (Special Education Local Plan Area) nurse come to our home to meet Gracie and discuss her medical needs for school. This was set-up due to the problems I encountered on the program tour in January. This meeting was very positive and I feel like we are finally headed in the right direction... and with support.
• Had a lengthy intake interview with the nursing agency to set-up a plan of treatment for Gracie.
• Interviewed (and selected) a day nurse to start once all insurance authorizations are in place. Cross your fingers... I truly cannot stand this process. It's exhausting to build the trust and rapport needed to have someone in your home for eight hours a day, let alone have them take care of your child.

There are positives: This will 1) allow Gracie to attend school once placement is finalized and 2) allow me to be a better mother to both of my kids. Because Gracie is not mobile and Preston is SUPER mobile, I can only take them places in the stroller or car. In other words, we've (they've) been limited on park-time (weather permitting) and any other outing that would allow each of them freedom to play. If Preston gets up to play, Gracie wants up too. I can't be in two places at once, so it's impossible to do without a second set of responsible hands. It is my hope that once a trusted nurse is in place and Gracie's in school, Preston and I can have some good, quality time together where he is not constantly waiting for his sister's needs to be met first. Playgroups, library time, a tumbling class for my little daredevil (thanks for the suggestion, Helen!) ... I have a wish list that's growing rapidly!

Since Gracie was born, we've constantly had people in and out of our home for therapy, school, etc. Once she required nursing care, then all privacy went away. Granted, we were very lucky to have had a wonderful nurse with us for over 3 1/2 years who truly loved Gracie and was always so respectful of our home, privacy, etc, but it wasn't easy to constantly feel as though our lives were on display. It's been a nice break these last several months to have our space be our own - - it's something we've not known for almost six years. It is time, however, to have that help again... Gracie needs it, Preston needs it and I (yes, I'll admit it) need it, too. The new nurse will start part-time and then if it works out, we'll have her full-time.

In the next 10 days:

• Pulmonology
• Pacemaker Check
• Cardiology
• ENT
• Intake interview with our new Regional Center worker
• New nurse should be starting
• Gracie's home-hospital teacher should finally be starting (as well as therapy evals for school)
• NANA and PAPA will visit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Papa is on leave from his service in Afghanistan... we are so excited to see him.

Greetings From Our New Nest

I know, I know... where have we been? Well, we are finally trying to "come up for air" and emerge from the depths of moving craziness. There has been so much to do and when not trying to tackle the giant "to-do" list that keeps growing, and John's not working, we are trying to have fun and play with our kids. At the same time, and we must be crazy, we have tried to embrace the holiday spirit and have put up some modest lights on the house, hung a wreath and actually have a tree with lights. The house is lacking our traditional "Griswold" flair in that we haven't put up lights and decorations everywhere, but it's certainly a respectable effort given our current situation! The tree, however, is a sad little sight. It's got lights on the top two-thirds and no ornaments... and I still find myself saying "NO!" every other minute to both kids. Perhaps I should have forgone the tree... but I just can't give it up, no matter how sad it looks and no matter how consistent it forces me to be in my parenting. (Sometimes saying "no" and then giving consequences for repeat naughty behavior can be the most challenging part of parenting. Being consistent is so important... and so very exhausting!)

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 CAN'T WAIT to see you next week! We all miss you SO much!

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.

Advice needed, please! Oh... and should I mention that the terrible two's have set in with a vengeance... more on that, later. (I really don't think the "two's" have anything to do with the sleep issue.)

John is surviving the break-in phase. It's difficult at best and he's not really enjoying it... and that's the intention. It's called "break-in" for a reason. It's not supposed to be fun. I have to hand it to him. He's always required a lot of sleep - - and I mean A LOT! Even when I worked full-time and he worked part-time, I always had the bulk of the night shifts with Gracie because I have learned to survive on very, very little sleep. He learned how to do that a little bit better at the Academy and it seems to have stuck. So, he's balancing the work, the "home work" (all the reports and studying he still needs to do on his own time) and his family really well considering. On his days off, he is all about family time while the kids are awake - - and the kids (and I!) have been loving it! It's so nice to see his face every day! It's even nice to have the ability to be frustrated that he leaves his dirty clothes on the floor two feet from the hamper! I hoped the Academy would have fixed that... can't win 'em all! Ha!

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?!

If you look closely, you can see Gracie signing "swing."

My Camelias were in full bloom, but nothing was as hard to leave behind as this piece of concrete that stopped time with the names of our family as it existed in 2004 when we completely re-did the backyard.

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!

Greetings from our new nest... our new home!

More updates w/ Good and Great news!

WE OFFICIALLY HAVE A PLACE TO LIVE IN SO CAL!!!! WOO HOO!
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!)
I AM GOING TO BE AN AUNTIE!!!! :-)
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!

Updates... Good and NOT Good...

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.

John's Assignment - A Migration of the Flock!

Well, it's official! John has his assignment...
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...