Integrity Counts

Beyond proud of our big boy today.  He received the game ball for being honest about a play at first base where he didn't quite make the potential inning-ending out and the coaches were debating the call (which was in our team's favor).  Preston was asked if he got the out.  He said, "No." And he was right.  It was super close, though!  Ultimately, this changed the direction and tone of the game and we lost.  But, most important, the life lesson was not lost at all. 

Fractured Fashonista

Check out our little Diva's left foot.
Yep, that's a cast - - and cute toes, of course!

 On January 2nd, Gracie's ankle was fractured in two places following a massage and stretching with her nurse.  While her nurse clearly should have used less pressure and force, it wasn't entirely her fault.  Gracie has low bone density in her lower extremities due to lack of weight bearing and nutritional issues for the better part of nine years. 

You can see the lack of bone density here... her bones should be very bright and glowing instead of faded and almost transparent in places.  The ER doc and radiologist told me to be prepared for more of these as she ages.  Ugh. 

The good news is that is wasn't vascular - - her pediatrician had me rush her to the ER on the 2nd thinking she had a blood clot (DVT) rather than a break.  I had called in requesting an x-ray order because she suddenly wouldn't weight bear as we were leaving for a park outing.  He wanted us to be seen.  So along with Gracie's nurse, I rushed all three kids into the pediatrician to then have him tell me under no uncertain terms to rush her down to Children's in Oakland... 40+ miles away.  "Don't even stop at home first," he said.  (I did... I needed stuff for my kids and I needed to get Gracie's nurse back to her car.)

We rushed down to Oakland, John abruptly left work and met us alongside the freeway where we quickly exchanged the boys.  Gracie's nurse had been kind enough to offer to watch the boys in the lobby of the hospital until John got there, but he literally flew through multiple freeways to meet me. 
When I got Gracie to the ER, they were expecting us (those who had been waiting for hours were not so friendly and we had lots to say about us getting right in... including screaming racial slurs at us and the nursing staff who pulled us to the back immediately.  Sometimes I am so grateful Gracie is deaf and oblivious to that part of life.)  Anyway, once they examined her, they all seemed very underwhelmed and said they figured it was a fracture.  I said I figured so, too, but that the pediatrician literally freaked when he saw her leg swelling straight up past her knee and felt how hot it was.  Thankfully, he was wrong.

The bad news is this fracture is likely the first of many to come due to the fragility of her bones.  They put on a soft cast in the ER and by the time we drove all the way back home (at 10 something at night), Gracie had torn it off.  She got her hard cast on Monday and literally cried for four straight hours before conceding and giving into the fact that it won't come off.  We all know how this girl likes to be sock/shoe/clothes-less the minute she gets home... she was fit to be tied.  Now, though, she accepts it and is standing in it, doing her "Gracie Yoga" and pretty much back to normal.  And, in true Gracie fashion, she handled the pain like a champ.  Unless it was touched by someone other than her, she didn't really complain of pain hardly at all.  She even cruised furniture a bit before she was casted.  OUCH! 

The Gracie Update

It’s time for some serious catch-up on all things Miss Gracie. To set the record straight, it has not been my intent to exclude her from updates here. In fact, I have so many partially started posts sitting in blogger, that it’s shameful! The problem is, Gracie’s updates require a great deal of explanation and, well, truth be told, gathering my thoughts and getting them put to paper (or screen) has been very difficult the last several months. The move (so much surrounding that should be its own post!) and taking care of three kids (two of whom rely on me completely for everything) have made the more thought-full blog posts take a back seat. I’ve just been too overwhelmed with the day-to-day - - we are busy living!  

All dressed... and finally somewhere to go!
Gracie was super excited on her first day of school! (I was a nervous wreck!)

I’ll start with the best news… Gracie finally started school on Tuesday, September 18^th… after over five months total out of the classroom.   We weren't sure what she could handle after so long out of school (but for a couple of visits to her new class while we waited to find nursing).  In true Gracie fashion, she was gang-busters for her first day and when I stopped by the class just before picking Preston up (they are on the same campus!!!), they told me she was fine to stay the last full hour.  She was signing, responding to questions and involved in the day.  I walked out of the room with tears in my eyes.  Happy tears.  Relieved tears.

My quick snapshot of Gracie Girl before we wheeled her into class.
 I didn't want to make a big fuss, but still tried to capture her... It's not the best picture, but the moment was big and I wouldn't be me if I didn't try to capture it!

Before she could start school here, we had to establish private nursing at home  (and that nurse would attend school with her).  Accomplishing that task proved to be (just as I figured it would) quite difficult.  We don't exactly live in the most convenient community as far as commuting goes.  (That being said, we are finding that, even though this is a small community east of Mt. Diablo that was comprised mostly of orchards and farmland only two decades ago, it is proving to be very "special needs" friendly in many ways.)  Because of our location, we met only four nurses over the course of two months… one of whom basically admitted liking dogs more than kids (and was 30 minutes late and sans bra … and that wasn’t a good thing!) and another who, though super nice, would likely be relocating in six months.  Then we met Girlie, Gracie’s new nurse.  She worked a full week before we had Gracie start school and has now been with us a month.  Girlie has taken a definite interest in learning to sign the basics with Gracie and Gracie seems to like her.  (Because of the timing of our "modified year-round" schedule, Gracie has only had 8 days in the classroom - - the first two weeks of October are the fall break. I look forward to Gracie getting back into the real groove of school this coming Monday.  And, if I am being totally honest, I am just plain looking forward to both of the big kids going back to school!) 

I haven’t met Gracie's entire school team, but obviously know her teacher and aide… both of whom I adore.  Everyone within the district and county has made a huge effort to get Gracie into the classroom as fast as possible and has gone the extra mile to make her transition happy and seamless.  Thus far, the communication with me has been fantastic and the classroom has an open door policy, so I can drop in whenever to check out how things are going.  So far, so good.

As many of you know from communication outside the blog, we pulled Gracie out of school in April.  The details will not be posted here… at least not for now.  Suffice it to say, we take her education and school experience seriously and pulling her out of her program was not a hasty decision, but the circumstances surrounding (what turned out to be) her last day required quick action on our part.  As we searched for new placement and subsequently found what looked to be a great school, we learned that John was to be transferred back to Northern California.  It seemed unfair to start Gracie in a new program in late May, have her attend for a few weeks of the regular school year and only two weeks of the extended school year before moving her 369 miles to start all over again.  More than any of us, Gracie was facing so much change in such a short time.   Her world had been full of goodbyes… some explained prior to them happening (like losing her long-time Occupational Therapist when she moved away in January) and some just happened.  Even though we felt she was better off not returning to her school placement, she lost her familiar routine and the people in it, including all of her peers.  With the move, she lost the familiarity of our friends, our neighborhood, our home, her wonderful nurse (tireless advocate, friend, park pal, playmate), Pearl, her great therapy family and her doctors (some of whom we adored).  Everything turned on a dime for Gracie and, unlike the move in late 2008, she didn’t handle it all that well.



Gracie cruising on her favorite trike during her last day of Physical Therapy before the move.
Behind her is the wonderful Director of that therapy unit, Kristen, and her beloved, dedicated PT, Laural.
We both miss our old therapy family so much!

 

Miss G working the stairs with Pearl and the top motivating her with toys and Laural helping her press on.

 

With Kelsey, her sweet as pie Occupational Therapist

With Laural... whom we not only loved as Gracie's PT, but also as a friend

The goodbyes were so hard for me - - not just because of my own feelings about leaving - - but because as Gracie’s mom, I knew that her world was in the process of literally tilting on its axis and I had no guaranteed way of helping her fully understand it or protect her from what she would feel as a result.  Our decision to move was family based… not Gracie-based.  That is, while we naturally must consider all of Gracie’s specific and particular needs first, we must consider the fact that we are a family unit and decisions like a big, life altering move must consider Gracie, but not only Gracie.  There were a lot of tears shed on my part… for all of us.  But the biggest ones have come since the move, wondering when and how things would start to settle for her… and inside those tears was (is) a lot of guilt for disrupting her world so much.

Pearl and Gracie heading out on one of their park outings.
We miss her tons!

For over two months, she was depressed.  Her feedings, though always challenging, became more of a struggle.  Her behaviors became more challenging.  She was unmotivated to do much of anything. Granted, in the first days at the new house, she was eager to check things out, but for the most part, she just hung out, unmotivated to play or walk much.  And, because it was extremely hot most days, she didn’t even get the chance to be outside much except for first thing in the morning - - a huge change from living just a few miles from the beach.   With the exception of our immediate family, every bit of her routine and the people in it, was taken away.  She even lost therapy time because she was wait-listed for the first two and a half months after we relocated.  Between July 13^th and September 18^th, her good days could be counted on one hand. 

Thankfully, there was good in there and... we took pictures! 



Life of leisure in the pool!
The first weekend after we moved, we drove halfway back to our old house to spend the day with family.
To say that Gracie thoroughly enjoyed their new pool would be an understatement! I think if Gracie understood the concept of a wish, she'd wish for this in her own backyard!

Hanging with Daddy... one of Gracie's favorite things.

Another good thing... John is off on Sundays.  This hasn't been the case in nearly four years!
On one of John's first Sundays off, we took a long family walk, stopping for lunch and park time.  Gracie spontaneously signed "happy" and "family" while we were lunching.  That, I can assure you, made up for a lot of really rough days for me.  Gracie's simple expression refueled me on so many levels.
 

Hanging with Gavin... Gracie seems to enjoy him as much as she did Preston at that age.
I think she remembers a lot from that time, too.  She chuckles at him regularly, even from across the room and has, on more than one occasion, signed "cry" when he's fussing. 

Hanging with two of her most favorite people in the world!

I love this!  I was loading up the car and signed to Gracie, who was in a different room than Gavin, that it was time to go.  I came back inside after taking my first load of stuff to the car to find that she had not only crossed the house, but had brought him his chewy ring, and was sitting up like this in his car seat to give it to him! 

So, it hasn't been all bad... just not an overabundance of good.  The important thing is we appear to have passed that really tough space and, with the exception of getting "medically re-established" (9 specialists, a pediatrician, a dentist and several therapists...), we are on the other side of a lot of hard stuff. 

(A little "good" teaser... Remember the blue feather from last November?  There was a "blue feather" day recently - - actually, it was more than a day - - stay tuned for that cuteness!)

Hello Kindergarten!

On Tuesday, July 31st, Preston started Kindergarten.   KINDERGARTEN!!! 
(Wasn't he just Gavin's age?!)

The day before school started, I took him to his "Sneak a Peek" at school. It was an opportunity to meet his teacher, get familiar with the classroom and meet some of his classmates. The week before school started, his teacher sent out a letter and a postcard to each of the students.    Preston LOVES getting mail, so she was instantly "awesome" in his book!  Then, on the "sneak a peek" day, she had a classroom treasure hunt and the kids received a "Cool Kindergartner" band, a book from the "David Goes to School" series and a few special treasures to remind them of important things about themselves and their experiences.  She also had a few things to make the parents comfortable and prepared. There were so many thoughtful little touches - - I could tell we would like her right away!

His morning consisted of a healthy breakfast on the special red plate. (We received our red plate from our dear, former neighbors, Paloma and Julio. At the time, I didn't know about the "red plate" tradition. I loved the idea so much we decided to implement it in our family. The fact that our plate is from people who are special to us makes the tradition even more fun.)

Nana and Papa drove two hours to be at our house to send him off on his first day. They were also here to help with Gracie and Gavin so that John and I could take Preston together. Later, they watched Gavin while John and I took Gracie for a classroom visit and meeting. (She can't actually start school until we establish nursing... which is another story.)

During the obligatory "first day" photos, John made him laugh. Love these...

And then Nana took one of our special boy with both his parents...

And then we were off to school. His teacher met us at the door and let the late bird kids know where their lunches, snacks and "completed work" belong. Then, with a quick kiss and hug goodbye, our boy confidently walked into the classroom, put his backpack into his cubby and walked over to his seat at the table and sat down. Just like that.

He had a great day and came home with more treasures that helped spark so many conversations about his first day.

The rest of the week went off without too many hitches... for him, anyway!  I, on the other hand, had some "heart-crunchy" moments. (Thanks for that term, Hannah!  It's a perfect description!)

On Wednesday, I walked in with Preston (pushing Gavin and Gracie in our double stroller) and waited in line on the playground.   He tried striking up a conversation with a boy in his class - - asked if he wanted to play at recess, got shot down completely and was told by the little boy that he was going to play with his friend in a different class. Preston just stood there, taking in the conversation and looking deflated.  I stood there, blinking back the tears that were stinging my eyes behind my sunglasses.  Preston looked at me with a bummed expression and I gently said that maybe his classmate could introduce him to the other friend if he asked.  He just shook his head.  I went home and cried, feeling so sad that my boy was experiencing the pains of growing up (knowing full-well that these lessons are necessary, but still not happy that he could have been hurt by the rejection). As the kids walked in their line to class and the parents filed out of the gate, I heard him kindly remind that same little boy that they're supposed to walk on the line, not next to it. I was proud of my little leader and the fact that he wasn't phased by the conversation that had occurred just minutes before.

On Thursday, he asked if he could walk in through the gate to his classroom by himself. I let him... because I know how independent he is and wants to be, but stayed where I could watch him go in... proud and sad at the same time.  Again, heart-crunchy.  (I have not let him walk to his room alone again... even though he keeps asking.  I know he is capable, but I am not ready!)  When I picked him up Thursday, he said it had been, "The best day ever!"  I asked what made it so great and he said that he played with the very same boy from Wednesday morning's encounter (and his friend from another class).  So cute.  And I was worried about what, exactly?!

We have now completed the second week of kindergarten and, by all accounts, everything is going great!  He was "Coyote of the Day" on Monday and on Wednesday, I attended his "Back to School Night" and got a good picture of the class structure and how his teacher runs things.   She showed this video...  which served to solidify all the things I was already liking about her.

As many who know him well predicted, Preston has adjusted to our move and to kindergarten very well.  I am so excited to see how he grows and changes as he begins his elementary school career... though I am in no rush and still wish life had a "pause" button!

Previously Unpublished - Socially Ignorant

The post below was written August 14, 2008... almost exactly three years ago. At the time, I wrote it to express myself, not so much to others, but to get some things off my chest. I was still fairly new at blogging, and wasn't really ready for the blog to be a "heavy" place - - I was still really finding my true voice. I shared this post with my dear friend, Hannah, so I could talk (email, really) about it and deal with some of the frustrations and fears I was having. But, it never saw the light of day on this blog. It's about real things that happen in our everyday life. And, heavy or light doesn't matter to me here... real does.

Yesterday I took the kids to a park that was new to us for a change of scenery and to explore one of the few accessible playgrounds in our area. In addition to the accessible features, it had a splashpad that Gracie, though feeling pretty rough, really enjoyed. She had the freedom to wheel herself through the water spouting from the ground. It was in this, of all places, that for the first time I heard a child (whom I guessed to be right around Gracie's age) use the word "retard" while looking directly at her... and within earshot of my son. Thankfully, Preston did not seem to hear him at all. But, I did. It's one of those moments that will be burned on my brain and heart forever. It was a moment that, for a very brief second, I was so glad that Gracie couldn't hear. And, it instantly brought me back to this previously unpublished post from three years ago. It reminded me that I have to take some serious steps in educating and preparing my son... and myself... for this is only the beginning of a very real and heavy journey of helping Preston cope with (and hopefully, along with his sister, positively influence) the social ignorance in this world.


August 14, 2008

“You sure have your hands full.”

I can't tell you how many times I have heard unsolicited comments over the years - - and especially that one lately... from perfect strangers who really seem to have the need to express their opinion. It's always interesting to me to hear it and the varying tones with which it is spoken.

I am sure I often look quite disheveled in the triple digit heat after having unloaded the big double stroller from the back of our giant, gas guzzling SUV (sorry greenies... I offset our environmental footprint in other ways!), loaded the suction in the bottom (because I can't load it once the kids are in their seats), situated Preston in his seat with a snack and a sippy cup, placed Gracie in her seat (usually followed by a quick suction and a wipe-up of her neck) and then turn off the car (because the air conditioning needs to run until she's out of the car) and grab wallet, keys, etc. Depending on their cooperation level, it can be a long time before I actually leave the parking lot and enter the store. Then I have to shop, pay and reload my little crew. I am sure it's quite a site... and yes, my hands are quite full.

I heard the words from my husband tonight... when he checked in from the Academy, lovingly said with the "I don't know how you do it and thank you for doing it" kind of tone. Yet, too often I hear a hint of pity... sometimes even a "Thank goodness it's you and not me" kind of tone. I don't dwell on these comments... these judgments. They are often said by a person who was caught staring a little too long at my daughter. Make no mistake; I don't ever forget that she has special needs... I carry equipment with me wherever we go that won't let me forget that... but I don't actually think about it - - I just live. And, I really don't remember that she looks different unless I see her reflection in the mirror. When I look directly at her, I just see my sweet daughter.

I should preface by saying that I like to believe that most people, are in general, kindhearted. However, being kindhearted doesn't mean that people aren't also a little ignorant. When Gracie was younger (before she had her trach and the extended hospital stay that altered so much in the way of development for her) we used to try and take her out as much as possible... and for a while (until we grew used to it) it was something we disliked doing. People stared then, too, even without the extra "accessories." Once, in the home section of Macys, a woman backed into a display table and knocked over a crystal vase because she couldn't keep her eyes off our daughter (who was in her car seat and stroller with her g-tube vented to keep her from vomiting). John used to get so furious. Sometimes... rarely, now... we both still do... but it is rare. We've learned to handle it. We know that it comes from a place of social ignorance, not a lack of kindness... not usually. (I have had a complete stranger tell me that Gracie's disabilities are a direct reflection of the sins of her parents and that if we turned ourselves over to God completely, He would heal her. Can you even imagine? Not only do I find that to be a horrific and cruel thing to say - - what kind of God would harm a child to punish the parents? Not any God I can believe in. And if "healing" her were only that simple...)

Most parents look forward play dates at the park - - bonding with other parents while they watch their children play together.  That didn’t happen for us.  The park wasn’t a “fun” place to go; it was only a reminder of what was different in our lives… and a reminder that many people don’t know how to handle themselves or their innocent, teachable children, in the face of a social learning opportunity.  Children were often tugged away when they would make inquiries about Gracie.  They would ask, “What’s that tube?” or “What’s in her neck?” or “Why can’t she walk?”  all of which are innocent questions that were (and are) perfectly logical for a child to ask.  I love it when kids ask me questions… but when their parents don’t give them chance to hear the answers and ask more questions, a wonderful teaching opportunity becomes the wrong lesson learned.  By being discouraged from asking and learning, children are being taught that Gracie, and any other child who is different from them, is scary, weird… or worse.   Perhaps because of their own social ignorance and discomfort, parents who tug their children away from these types of situations, are, in their minds, doing so to “protect” Gracie and me from what they perceive to be an awkward situation.  In fact, what they are actually doing is failing to teach their children crucial lessons about the “differently-abled."  And, by tugging them away or shushing them, they are teaching them to be less accepting and afraid.  Needless to say, there wasn't much socializing happening at the park, but not for lack of effort.  Often, other parents would mutter a quick "hello" in response to my greeting and then quickly avert their eyes. I can remember over two years ago, another mom talked with me for a few minutes and I felt like a "normal mom" at the park for the very first time. I don't say this in self-pity in any way... it's just what our reality was for so long.

When Preston was born, it was such a strange thing to be out with him (and not Gracie) and have people stop to "coo" and "ooh and ah" at him. No one has tripped over themselves and a display table to catch a glimpse of him. No one has ever stopped to tell me that God gave him to me because I could handle him and the challenges that he'll have in life. No one has ever told me that He picked me to be his mom because I am the right person for the job. These are the things that strangers who didn't ignore us would say about Gracie. Such a profound difference... a contradiction that I really can't articulate.

Tuesday I took the kids out and ran a couple of errands - - one of which was to Babies 'R Us. It's the first time I have had both kids in that particular store. It can be an experience to go into a baby store with a disabled child. Some people pay no attention... that's good. Some people are very kind... that's good, too. But a few people (usually expectant parents) will literally look at you with fear in their eyes... pleading with whatever God they believe in to not let "that" happen to them. I can see it in their faces... and I've learned to let it go. But on Tuesday, I think my son sensed something from one of those expectant parents who stared way too long at Gracie. Obviously, at fifteen months, I don't think that he can intellectualize why someone was staring at her (and maybe he thought the woman was looking at him) but whatever he thought about it, he didn't like it. He made this grunting/yelling noise that he only makes when he's mad or frustrated - - and his "stink face" accompanied it. He made the noise three times... and she FINALLY smiled uncomfortably and said, "Wow, you sure have YOUR hands full." I just smiled and said, "Yep, sure do." I sort of wanted to say, "Yep, sure do... and you should continue to stare at us so you can remember what you are witnessing, for I stand before you with my hands entirely full - - full of a love that you can't possibly comprehend... and you should be so lucky." But, of course, I didn't, and that would only be passing judgment on her life, which I obviously know nothing about.

What she made me realize though, is that while I've known for a few months that Preston is keenly aware that his sister is different, he is now sensing things about the reactions of strangers. His awareness will only grow as he does and it is up to John and me to teach him how to respond to others and answer the myriad of questions he will surely have someday. And, I have to always remember that he is keenly aware of my behavior and that to be a good parent and a good example, I have to be dignified, kind and attempt to educate the ignorant... even when all I really want to do is put them in check in a very undignified, unkind way.

Foto Friday 2, vol. 6 - Toothless Wonder and Little Daredevil

February 14, 2010

February 18, 2010
This time, last year, Gracie lost her first tooth. It wasn't much later that she lost the one right next to it. This week, she lost two more... for a total of four. Her bottom two permanent teeth are growing in (in opposite directions!) and now she's toothless on the top! As far as grins go, she couldn't look more like an almost seven year-old! Tooth fairy is scheduled to arrive and collect both teeth sometime in the wee hours tonight!


Daredevil or Athlete... you decide!
If it's there, he will climb it!




Scrimmaging with Daddy while Grandpa John cheers him on

First day of Preschool

Today our little man started preschool!

(Yes, I know... not a very "toddler friendly" backpack! The Caillou one I ordered online was way too small for all his stuff! We are working on getting something much cooler!)

This day has been several months in the making with lots of tours at various programs, lots of disappointment (apparently my standards are high) and then, finally, with the help of another local mom, I was introduced to Preston's new school. When it was described to me, I was hopeful. When I toured with him last month, I knew it was exactly what we'd been looking for.

He was so excited this morning!

And, we were so excited for him! But when we drove away, I felt like a part of me was missing. I was nervous for him and was almost sick to my stomach with anxiety for the better part of an hour. When I called later to check on him, I was told that he cried for us for over 30 minutes about 20 minutes after we left. (Dagger, meet my mamaheart. Ouch.) I know it's normal, but it hurt and made me sad.

He had a few more emotional moments throughout the day, but for the most part, had a lot of fun. When we picked him up, I could see he had been crying recently. His eyes lit up and he squealed with excitement when he saw me, then John and then "Neener." He was really happy to see us. His teacher was wonderful and she told me how they comforted him and reassured him that we were, indeed, coming back for him. Thankfully, he said he had fun and that he was excited to go back on Friday. He chatted all the way home about his school day, his new friend "Timmy," and said he played and prayed. Soooo cute. Fingers crossed for fewer tears and more smiles on Friday!

He will attend an "odd" schedule of Tuesdays and Fridays... it is so kind of the school director to be flexible and work around therapy appointments for Gracie (thus, eliminating Preston having to attend and/or ride in the car for over three hours on those days). The other (huge!) bonus is that John is off most Tuesdays. When we got in the car after dropping Preston off this morning, it was the first time that we'd been together (with the exception of his graduation party last year, which doesn't count because he was too stressed out to be recognized!) without at least one of our children in eighteen and a half months. It was wonderful and strange all at the same time. We are looking forward to our few hours on Tuesdays so much. On Fridays, I will have some time to myself and time to get chores done around the house... with my music blasting and no guilt for having Preston watch a video while I get it all done!

My little man is in preschool... such a big boy now... sigh.

First Day of 1st Grade

Today was Gracie's first day of the first grade... sigh.
I cannot believe that my little girl is now a big first grader. Perhaps because she didn't get to do the "normal" preschool routine and her "Kindergarten" school year was only a total of a little over four months plus summer school. Or, perhaps (and most likely) it's because I am in a bit of denial about how quickly time passes - - at least in some respects!

She wasn't all that thrilled about school this morning... didn't want any part of getting ready and was downright furious when we took her outside to wait for the bus. (Granted, she slept all of about three hours total all night... ouch for her... ouch for mommy!) But, when she actually saw the bus and got in her seat, she was pretty stinkin' pleased!

Shortly after the bus left, I went over to the school to discuss some things with the school RN and take Gracie's gait trainer. I got to see her happy little face for a brief second as she headed to another classroom for a bit. Her teacher and I also had the chance to talk today (we talked at length Friday when Preston and I took in a bunch of Gracie's supplies) and she's now seen the walking video and a bit of the blog... so she really knows what Little Miss can do! She's got Gracie's number now and plans on pushing her - - and I am happy! :-)

This is when she got home from school and
I asked her if she had a good day!
As happy as she was to be back at school, she was tired! After she cooled down from the ride and being outside, I fed her, gave her a breathing treatment and she took a 45 minute nap.

Then, it was off to PT and OT.
For PT, she wasn't all that excited about walking - - she was tired and, as luck would have it, it was the day that her PT wanted to time her walking certain distances for her assessment report... go figure! She had Gracie do other things instead and we will try the walking again on Thursday.

She was happy in OT, though... and sat up independently for most of the session - - only a few small protests and she was back up.

She practiced putting the wood blocks on the dowels and also threading them. Her favorite thing to do, though, is put her fingers in the holes and have blocks on all five digits!

She put the necklaces as part of OT, has little weights on her wrists and had all the frilly stuff around her, so Ericka, her OT, put the glasses on and I couldn't resist the photo op!

Hopefully, she sleeps better tonight!

Ugh...

This is what our house looks like so far today... ugh. Lights out, blinds drawn shut to keep out the sunshine, thermometer, stethoscope and nebulizer working overtime.
I guess it was inevitable. There is something running rampant in the community... and since I am still nursing a relentless cough from two weeks ago and since John got a mild version of my "ick," I guess it's no wonder that the kids finally gave in and got it full force.

He: 100.2 (Tylenol on board) with a stuffy nose, cough that sounds like a small seal and clingy (and cuddly... I like that part) as can be. Saw the doctor yesterday and have antibiotics on stand-by if he gets worse. Otherwise, lots of rest, fluids and nose blowing. (Suctioning with Gracie's machine, actually. Thankfully, he doesn't mind this and recognizes the benefits. He's even tried to do it himself!)

She: 101.4 (Tylenol on board) with a stuffy nose, cough and stuffy trach, still raging ear infection and a visit to the doctor in store. She's not yet cuddly, rather wanting her space and sleeping on and off (since she didn't do that last night or the night before). I've given regular breathing treatments since yesterday after school to keep her lungs nice and open... but she probably needs an antibiotic sooner than later.

The Fourth... Ouchies and Cupcakes

He's okay.
I, on the other hand, am trying to recover.
Preston and I went outside in the morning to do our normal "doggie poopie pick-up" in the back yard. He ran to the grass to start taking inventory (he likes to tell me where it all is...) and I stopped on the far end of the patio to fight a battle with a spider and it's web. Using the big broom as my weapon, I didn't hear Preston come up right behind me. I took a big sweep backwards right as he ran up to me... and wham... impact.

The most sickening feeling overcame my stomach. The sound of the broom handle and his eye meeting along with the sound of his screams and sight of him shaking in pain will take a long time to leave my mind. He's okay... I talked to the advice nurse at the hospital and am doing and watching for all the right things. He is seeing normally... and we will continue to monitor that carefully for a while. He took a mighty blow and will surely have quite a shiner to show for it. My mommy heart is scarred, though, for being the cause of this accident. Not so happy morning of the fourth.


Little Miss was not dressed for very long today. She has a raging ear infection in her left ear and spent half of the afternoon asleep in a diaper under the ceiling fan. But, while she was dressed and awake, I took these pics! The hat that Gracie's wearing was a project at school, as are the decorations I taped to the mirror behind the kids.
(Thanks, again, for the adorable outfit, Clayton Family!)

How to eat a cupcake...and how to recover from a battle with a broomstick handle.

Thankfully, Gracie rallied a bit in the evening and when John got home from work we all went for a walk. We ended up meeting some very nice people a few streets away and they invited us to watch fireworks. It was really a nice, unexpected ending to a rather dreary (but for the cupcakes!) Fourth of July. Preston befriended a sweet nine year-old who was so patient with him and Gracie was very content sitting in the stroller (out of the smoke line), signing "colors" and "lights" over and over.

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!

Seriously... what is with Fridays lately?

Three weeks ago... on Friday... was the start of "Potty Drama." This past Friday brought some drama, too. I am glad May is ending and hope that my Friday dramas end with it! Farewell May... bring on June!

I will preface this post by saying that Gracie is just fine... but what happened on Friday morning was quite alarming and for a few, brief moments (that didn't feel so brief) quite unnerving.

Fridays are not Gracie's typical school day, but since there was an event on Wednesday in which she couldn't have actively participated, we planned to swap Wednesday for Friday. (Next week she starts Monday thru Thursday!)

Fridays are also Preston's TOTnastics day... he loves this! He gets to see his little friends, jump, run, somersault, sing and play for an hour straight. No interruptions for anything - - it's all about him.

So, Friday rolls around and it's business as usual in the morning... waking up both kids, getting them dressed, teeth brushed, hair combed, load the car with equipment, backpacks, snacks, sippy cup and, of course, kids. We make our way out of our neighborhood and head toward Gracie's school, which is about 8 miles from our house - - and takes about 30 minutes if you hit the lights wrong... and I almost always do! Anyway, through the whole car ride, Preston and I are discussing what we are doing after we drop off "Neener." (Don't ask... she's got a million nicknames... many courtesy of Daddy. Preston doesn't miss a beat, so he now calls her all of the names that both John and I do! Maybe that's a silver lining to the fact that she can't hear us... she'd never learn her name if she could hear all the different terms of endearment she has!)

As we approach the street her school is on, Gracie coughed... very typical. I looked in my rear view mirror at her just as about a tablespoon of thick, blood-tinged secretions poured out her trach. At that point I wasn't too alarmed. People with trachs can get an irritated airway which can easily cause bleeding. This has happened to Gracie several times over the years... especially when really sick, or dry (like in the winter from the heater running without enough humidification), or when in the hospital because the air is so dry. She had been fairly dry the day before and she'd had surgery last week (the ENT removed some granulation tissue as well) so I thought perhaps her airway was irritated due to the surgery and the dryness the day before.

I pulled into the drop-off area and she coughed again... and it was worse. It wasn't blood-tinged secretions... it was just blood... a lot of it. I jumped out of the car and let her health aid and the school nurse (who were waiting curbside for her) that I didn't think she'd be getting out of the car. For the next five minutes or so, I just kept suctioning blood from her trach while trying to remain calm. The nurse, Cathy, and I were talking about the fact that this has happened before, but as every second was passing and I kept suctioning, I also told her that this looked different.

Gracie was none the wiser to what was happening... she was signing "up" and starting to get really upset that we hadn't gotten her out of the car. Preston was talking about "nastics" and getting a little impatient. That's when I noticed a tiny speck of blood in the right corner of her mouth... and as I wiped it I could see her teeth were now blood-tinged. At first we thought she was coughing so hard that the blood was coming up into her mouth. I suctioned her mouth and got an enormous amount of thick blood and that's when I told Cathy that it might actually be coming from her mouth.

It was hard to see because Gracie won't just open her mouth for you. I pried the Yankauer (an oral suctioning attachment, very similar to the one a dentist uses) into the back of her right cheek and could see blood pooling back there. I was relieved on the one hand (because with the amount of blood, I knew we were headed to the ER if it was coming from her airway) but, then again, not so relieved because I couldn't tell why she was bleeding. More prying into her mouth revealed that her gums in the center of the bottom-right 6-year molar she's been cutting (she's been working on all four of these teeth for almost a year) was the source. But why, you ask? Well, because my little girl, who is also cutting the top-right 6-year molar, was grinding her teeth so hard during the drive, that she sliced the daylights out of the bottom gum with the very sharp edge of the top molar. (She often grinds - - for so many reasons - - in fact her other molars are ground even to her gum line.)

I didn't actually confirm what had happened until I was able to get in there and look when we returned home... which was pretty much the exact moment the bleeding finally stopped... doesn't it figure? The ride home included two pull-overs for suctioning. And, sadly, the shirt she was wearing doesn't appear to have survived the drama.

I had called our dentist in route, but he is off until the 15th of June. Should this happen again, I will be calling the on-call dentist to see if there is anything we can do to stop the bleeding or help with removing the excess gum tissue. The big concern here is the fact that she can't swallow at all, so even though she has the trach for suctioning access, some of that blood was certainly aspirated into her lungs. Hopefully, with all the extra breathing treatments I did (and am doing), we will avoid any big issues. It's taking her so long to cut these teeth because she's not an oral eater. Those molars have a lot of tissue to break through without the help of constant stimulation from chewing.

So, she missed school, Preston missed his class, we waited for our Friday nurse to arrive, then took Gracie to her (previously scheduled) post-op ENT appointment, raced back home for the nursing company to do their monthly supervisory visit and then took the kids on a WELL DESERVED two hour park outing. I needed that mindless running-around, sliding, swinging, fresh-air time just as much as they did!

Oh... and Preston... well he handled the disappointment of not having his "planned day" so very well. He knows that blood equals an owie, so he was concerned about Gracie and quietly accepted that we were going straight back to the house without going to his TOTnastics class. I, on the other hand, felt so disappointed for both of them. Gracie was so sad to be sitting at the school and not able to go in - - and not understanding why. It was heartbreaking. She handled it well though and was no longer upset once she realized we turned into our neighborhood.

And although Preston handled it all so well (and completely forgot about it, I think, by the time we headed out the door for the doctor's appointment), I often wonder what effect all of the extra waiting and changed plans will have on him. I constantly feel like I am telling him, "Wait a second, Bubba... I need to suction Gracie first." Or, "I need to help sissy, first." It's a delicate balance and I really do try to even it out, but the bottom line is that she requires so much more immediate, hands-on care. It's just one more reason that her successful transition to school is so important... it's good for Preston to have more frequent individual attention - - no matter how tolerant he is and no matter how much he loves his sister - - he needs to be "first fiddle" a little more often.

Dusty Eggs

I do not have a hang-up about my age. I do not face my birthday with dread. I do not, by any means, think I am old.

But today, when I woke-up on my 35th birthday, something in me felt slightly sadder than the day before. I don't feel any older, I don't look any older, but today, I officially have "dusty eggs." I am well aware of the fact that millions of women, many women whom I know and love, have babies well past their thirty-fifth birthday. But, these women are not me. I became a "high risk" mother the minute that Miss Gracie was born. I held my breath through my entire pregnancy with Preston because I knew, much better than I knew before I became Gracie's mommy, how easily nature can go off course and what a miracle it truly is for a healthy baby to be born. Today I woke-up in the "general" high-risk category simply because of my age (or rather, the age of my eggs) and today, I felt a twinge of unexpected sadness.

I do notice the increasing little lines around my eyes and smile, but I try to remember that I've earned them. I do have many grey (actually, white) hairs peeking through all around my hairline, but I am grateful to be blonde enough still that only I really notice them. I laugh when I meet someone whom I think I might be a "few" years older than, only to learn they've just graduated college and I've got an entire teenager on them. Usually, I am completely grateful to be past all those years and where I am now... more confident, more self-aware, less caught-up in the opinion of others. Today, though, I was keenly aware of their young eggs and mine that are, per the medical world, starting to gather cobwebs like forgotten items in a dark attic.

Perhaps what was a ticking clock yesterday sounded more like a gong today because these days it's completely terrifying to imagine adding to our family (and we'd really like to). Preston is going through a really rough (and rotten) stage - - one that's totally normal, but because Gracie is often on the receiving end of his terrible two wildness, it's really impossible to walk two feet away without worrying that he's going to pounce on her. She's too fragile and little to defend herself and often doesn't even see (or hear) him coming. Don't get me wrong... he's still so sweet and loving toward her, too. This is, my mom keeps reminding me, a phase. Nevertheless, it's impossible to imagine adding a newborn in the mix. At the same time, I feel like, "It's now, or never." I wouldn't want a huge age gap between Preston and a third child, I don't want to be too much older... tick, Tock, TICK, TOCK...

I know that my age is young. I know that despite an achy back and years of terrible sleep, I still feel relatively young. I know I am being completely dramatic and a little self-indulgent... "It's my party and I'll cry if I want to!"
I laughed a bit as I told my girlfriends today about my egg issue and admitted that I was being slightly ridiculous. My dear friend, Becky, told me as we hung-up, "Put some party hats on those dusty eggs!" Thanks, Barecca :-). I'm working on it!

Potty Training In Progress!

Perhaps you remember this photo - it used to be in the sidebar? It was taken when Preston was about 14 months... when his interest in the potty started. At the time, he was all about imitating... never sat on that potty with the lid up or his pants off, but he loved to pretend he was going if one of us was going!

Around 17+ months, right around our move, he started showing more interest and telling me more often about his diaper. With the chaos of the move, I couldn't keep up with him and he lost a bit of interest.

Now... he's all about the potty! He will only use the big boy potty, though, and up until the last week or so, he liked going with Daddy much more than Mommy! Same plumbing, I guess! Plus, Daddy is just so much cooler than Mommy!

Now he's going several times a day... by his own request about half the time! And, he always signs potty when he goes! (That's the shaking fist you see in the pics, for those of you who don't know ASL!)

The world's cutest "tighty whities!"

Foto Friday vol. 2

It's been loose a while now and last week Gracie finally started noticing that her tongue could play with her tooth! She was wiggling it, trying to gnaw on things to make it move... you get the idea! It's always been a great fear of ours that she'll monkey with it when we are least expecting it and then, poof, it's lodged in her airway. So, Thursday night, February 5th, Daddy Dentist took matters in his own hands and dabbed on a little Orajel, grasped her tooth with a 2x2 gauze and after a slight tug that didn't even phase her, he pulled it out and she laughed. Now her tongue has a little gap to play with and our little girl has a "bigger girl" grin!

Have you seen this BB?

MISSING:

"BB"

AKAs:

"Binky"

"B"

and in a frantic search

"Beeeeeeeeeee Beeeeeeeeeeee"

LAST SEEN:

Tuesday, January 27, 2009

at approximately 2:45 pm

when carelessly thrown in a fit

of "terrible two" anger.

IF SPOTTED:

Do not return to owner.

Please discard in nearest trash receptacle.

OWNER'S WISHES:

Owner wants all BBs returned unharmed, no questions asked.

Please do not cooperate with owner.

Owner was previously distraught, calling out for BB dozens of times throughout the day. The owner has now begun accepting that BB is gone because he threw it (and another BB Backup earlier in the same day) when he was naughty and mad. He has been reminded how important it is to only throw balls and not show his anger by throwing (or hitting). In addition, all other "Backup BB friends" that lived in the owner's house are missing (or have been "taken care of") and his mommy would like to keep it that way. (Owner's mommy hopes that if there is a lingering BB Backup somewhere in the house, she finds it before the owner does!)

Owner has turned his attention (affection and obsession) to a small, talking stuffed toy, "Lambchop," who once belonged to his sister. He has been known to walk around loving on Lambchop, giving her hugs, kisses and patting her back. Owner's mommy sincerely hopes that Lambchop doesn't go missing as there is no backup plan for her!

IF "BB" IS FOUND,

PLEASE DO NOT COOPERATE WITH OWNER.

A mood to match the sky (unabridged)

Will the complaining on this blog stop soon, you ask?
My Magic 8 ball says, "Outlook not so good."
(At least for most of this post!)

On Friday, I toured what we thought was going to be Gracie's school. It didn't go well... or at least, it didn't end well. By the time I got home, my mood matched the gloomy sky and I literally couldn't speak about what transpired without crying. My whining from the night before turned to anger, sadness, frustration and disappointment.

I should preface by mentioning that we originally had two classes from which to choose for Gracie. One is a "Multiply Disabled DHOH (Deaf and Hard of Hearing)" class and the other is a "Medically Fragile, Multiply Disabled" class. John and I carefully considered both programs after I, alone, toured them. There are pros and cons to each, and while I was initially very frustrated with the decision making process, Gracie's former teacher kindly reminded me that we are lucky to have two programs to be considering.

The "Multiply Disabled DHOH" class is ideal for Gracie - - she would actually be one of three students in the class with CHARGE, if you can believe that! I still can't! The students in the class range in age from (I believe) 5-10 years old and are placed there based on abilities and goals. I felt like I had walked into a dream when I saw the class... it's exactly the "blend" of programs I had wished was available before we moved. But there are some drawbacks in placing Gracie there at this time. One is that she'd have to have a nurse attend with her and finding a nurse that will be a good match to Gracie and that John and I are comfortable with isn't necessarily an easy task. Given the nursing shortage and the economy (thus the criminally low wages paid to the nurses), finding someone becomes even more difficult these days. The other issue with that program is that Gracie would be the only student not "independently mobile." There is one student who uses a gait trainer, but does so without much support.

In the "Medically Fragile, Multiply Disabled" class, Gracie would be with peers who are at relatively the same gross motor development level as her, I am told relatively the same cognitive development (that's hard to determine from my visits), but NO ONE signs. There are nurses and health aids on staff so there wouldn't be a need for hiring a nurse. However, since the (and this is HUGE) communication piece is missing, she'd need a one-on-one Signing Instructional Aid to be with her. Finding a person to fill that need for Gracie is also a difficult task. There are other pros and cons to this placement. The "big" additional pros are that the OT and PT clinics she'd be attending are there so she'd be able to go to therapy directly from school. Also, she'd be in a class with peers who are using the same equipment as her and working on many of the same skills as her. This would be (we think) motivating for her.

Ultimately we decided that we'd place her in the "Medically Fragile, Multiply Disabled" class and work toward the "Multiply Disabled DHOH" class. The idea was that we could be looking for the right nursing fit in the meantime with the goal of placing Gracie in the other class in the fall. Additionally, we felt that since she's still adjusting to going to school full time, having a "one-stop-shop" for therapy and school might make for an easier transition.

During Friday's tour, my main purpose was to determine whether we'd want Gracie to attend while the district is still trying to find a signing instructional aid. I spent nearly two hours with the Program Director and he patiently answered my questions and showed me everything I asked to see. When we finished, I asked the program's nurse if she had a few minutes to chat about what she needs from me in order to get Gracie's medical plan in place.

We had a friendly chat about a few things... a little small talk about bacteria. I asked her a few questions about Gracie's current illness and she actually helped enlighten me a bit. It was a rapport-building conversation, I suppose. But certainly not enough rapport for what followed.

She informed me that Gracie's secretions must be under more control before she'd be allowed to attend school. She wasn't in any way referring to Gracie's current illness, rather her secretions in general. Gracie has, as I have said here before, incredibly tenacious secretions. She doesn't have the cranial nerve function to swallow... what little ability she had (and it wasn't much) completely stopped with her extended hospital stay at 16+ months during which she received her tracheostomy. She produces, according to her old ENT and the ENT we saw at Stanford, far more than the "normal" amount of saliva for a child her age - - more along the lines of an adult's production. Combine that level of saliva production, an inability to swallow and an open trach and you get a bit of a "wet mess." We have always referred to her as a "junky trach." Anyway, I was floored... no one had mentioned this issue until now. I toured that program in December and everyone was working (since the break ended) on placing Gracie here. While I understand, to a degree, the reasoning behind this requirement, I feel it's an incredibly subjective issue... who's to decide how much is too much...? What are Gracie's rights?

I informed the nurse that we'd tried everything conventional and non-conventional without success - - what did she expect us to do? She said, "You have to get her on Robinul." (This is a med that helps dry up secretions.) I let her know that we have tried it numerous times... it doesn't work for Gracie for various reasons. She said, "You have to try again... and you have to be diligent." Pardon me? "If there is one thing I am, it's diligent," I told her. (And, who on earth is she to judge how diligent we've been? She doesn't know me... she doesn't know John... and she doesn't know Gracie.) She responded by telling me, "You have to be more diligent." At that point, I was still reeling from the fact that we are taking steps backward... Gracie can't go to school. Now that she's finally ready and willing (with the exception of her current illness) they are taking it away. By making the "diligent" comment, she added insult to my injury with (what I perceived to be) an attack on my parenting. And, she didn't stop there.

She went on to further explain that Gracie also must wear something to cover her trach - - be it a trach collar, an HME (a "nose" cover for the trach) a surgical mask... something that will help stop her secretions from flying "free" when she coughs. Gracie has never been one to wear anything on her trach - - her 'preference' and because of her secretion production, most of those things aren't really good options. And, since we've had other, more urgent things to teach/train behaviorally, forcing this was not at the top of the list. I let the nurse know it and said I am more than willing to work on it, but that it will take considerable time, I imagine. (Given that it took nearly two years to get shoes back on her feet after a barefoot summer... my little OCD girlie!).

The comment made to me at this point was, "If she pulls a cover off, we have ways to keep it on." I wasn't thrilled with the tone or her sarcastic follow-up comment (which was likely in response to my facial expression), "But, maybe you don't want to know what that is." You bet I wanted to know... turns out it's a "cuff" type of device that fits over the arms of the (non-compliant) student/person and keeps them from being able to touch his/her face or head. It is NOT a restraint... it allows the person to reach in front of his/her body, reach a desk or tray, hug, etc. But, nothing toward the body, certainly nothing on the face, neck or head. I explained to her that under no uncertain terms would this be permissable for Gracie. She told me, "It would teach her that 'no' means 'no.'" I explained that Gracie uses sign language and to take away those movements and her ability to reach her body, face, head, etc., would hinder her communication. I explained how many signs are in that area... that she wouldn't even be able to sign her own name... amongst so many other things. She (IGNORANTLY) said, "What's the difference if she signs it 'here' (pointing out in front of her body about 10 inches) or 'here' (touching her face)?" Seriously? I didn't, at that point, have it in me to educate her. She threw in a few more comments... one of them being that I was focusing too much on language and communication and not on just getting her into the school. She felt the need to "explain" to me how much Gracie's been through and that I should be thankful she's even able to attend. (I am thankful... that goes without saying. But communication, is, by far, the biggest and most powerful tool we can provide our children. OF COURSE I will turn my focus there. Without that piece, what is school going to do for her? She doesn't need a babysitter. I have no intention of sending her to school so that she can sit around in her KidKart staring off, watching the world go by.) I could feel the emotions rising in my body and my goal was to get from her office to the parking lot without bursting into tears. I was also told that Gracie needs time away from me (I will be the first person to tell you that) and needs to "come to school and get some constructive love." I won't even dignify that with an additional comment.

I don't even know how I got home. I called both John and my mom, explaining some of what happened. By the time I parked in the driveway, I was sobbing and reeling with so many emotions. I was sad for Gracie and this huge setback. Disappointed for Gracie. Angry that I had allowed a perfect stranger manipulate me into doubting how I've mothered my daughter. Angry that I hadn't stood up to her more as it happened. Sad that the excitement of Gracie going to school had turned so ugly. Frustrated that we'd chosen this program and wasted time trying to make it work and now there is absolutely no way I will send my daughter to that school because I cannot trust in my heart that her best interests will be considered on all fronts. Sad because, for the first time, I regretted moving here.

I did call her new pulmonologist to get (yet another) prescription for Robinul so that we can diligently try again. And then I gave myself permission to live with all of my emotions the entire weekend. Amongst a million rants, I blubbered about, "What will we do now?" and "Who the hell is she to judge my parenting?" and "What if we still can't control her secretions... will she be stuck on home-hospital forever?" Along with the blubbering, I ate A LOT of comfort food.
When Monday rolled around I knew I had to speak to our district's Program Specialist and I just couldn't. I wasn't ready to have a coherent conversation... I was beyond the crying, but I was angry and scattered. I spoke to one of Gracie's former teachers (and my friend) and she helped me gather my thoughts and gave me a place to start the conversation.

Today I had that conversation... not nearly as neat and concise as I had intended... but I made my points. Apparently, I am not the first person to have these kinds of feelings after an encounter with said nurse. And, as luck would have it, we have ourselves a wonderfully reasonable and proactive Program Specialist! She had a plan "B" that has it's own plan A and B. We will put Gracie back on Home-Hospital for now, get assessments done (she's due for her triennial assessment ALREADY) and have all the "players" (i.e. teachers, therapists, etc.) get to know her (and love her!). In the meantime, the SELPA nurse and district nurse will meet Gracie and we will get some answers about her unacceptable secretions and how to proceed with a classroom placement, while I head the FULL-TIME, daunting search for a nurse.

So, there is a plan. I am not crying. The sky is blue and I have hope again.
My Magic 8 Ball says, "Outlook Good."