Most likely a Friday "escape"....and for the record- the nurses make the visit!

Since Rob's admittance we've had such a range of nurses. Male nurses, female nurses, hands-on nurses, more by the clock nurses....those that have gone out of their way, and those that have said, don't come out and ask questions- use the call button only. It makes such a big difference. Especially when the patient is so groggy that their 'guests' have to be the mouthpiece. All in all, the doctor's have been great, and the nurses have been great. But there have been a few that have made tensions run high, etc. I SO appreciate the nurses that have provided comfort, reasurrance, a hug when needed, and have been willing to answer question upon question. But, it makes the "call button only" nurses a bit off-putting. It also makes me really appreciate the outstanding nurses from our children's hospital. They were as much nurses for the kids as for the stressed out parents.

Just my rambling thoughts from tonight. Looks like Rob's final procedure will be Thursday, with a Friday 'get out of jail' free card ( I hope......)

I hate hospitals- I'd like to never see the inside of one again

Going on Day 5 (tomorrow), and I was SO hoping not to have to ever repeat long hospital stays (after Trey's mastoid adventure from last November). I left early tonight, after breaking the hospital bed (trying to lift it), telling my husband after his angiogram that he had a catheter when he didn't (yes....that really happened), and spilling some non-sterile liquids on his food tray. And those were the high points-LOL.

Actually today started as the best day since Friday, but Rob ended up w/ a fever (101...not too bad), which indicates potential infection, which postpones his final procedure before he can leave. Big bummer, but minor in the grand scheme of things. I also left because I just needed some love from the kids. It's so hard to be in a hospital all day- peeking into rooms full of concerned people, hanging out in waiting rooms w/ concerned, teary families, and being concerned and teary yourself. I just needed some kid hugs and normalcy. I got PLENTY....homework, school lunches, school picture forms, etc. I'll be back in the hospital game tomorrow, but tonight was much needed. Especially since we're looking at a Thursday/Friday release now.

Tomorrow I'll be right back in it, but tonight was wonderful. Back to fighting (I mean negotiating with) the school district tomorrow :)

Might be missing for a few days....

It's a long story, and not necessarily my story to tell. My husband wound up in the hospital on Friday morning, and will most likely be there a bit longer. He's stable, and doing well, but it has been a crazy few days (to put it mildly). Maybe at some later time I will get his permission to share, but for now I'll just ask for your patience as far as updates go.

As of right now, Wednesday might be 'release day', at which point I can fill you in on the mediocre teacher swap/school visit on Friday. Friday was just not a good day for our household......That said, from where I sit now it wasn't necessarily that bad either.

The Call from the Principal and Other Stories

So, last night when I *finally* got a chance to check voicemail, I discovered a message from the elementary school principal. "Oh no....I thought- what did he do". And much to my delight, as I listened, I found out that Jake was actually the victim of a snack attack. A 4th grader was stalking Jake (o.k., not really, he was probably standing right next to him), and saw Jake's snack fall out of his pocket. He scooped it up, and taunted Jake, telling him "I'm going to eat this, you'll never get it back"....o.k. so probably not the real words. I added for dramatic effect. But, the end result was the same. The boy took Jake's snack, stomped on it, and did not give it back. The principal handled it wonderfully in my opinion (in fact, maybe treated it too strongly), and Jake hadn't even mentioned the incident to me when he got home. But still, I loved the fact that the first phone call home from the principal (regarding Jake) was one of defense. Telling me how sad he was, how sweet he was, and how totally correct he handled it. I feel fairly certain they will not ALL go that way.

Second story: A mom, who was volunteering at the 'Birthday Table' with me, commented today, "Oh, did Emily just get hearing aids?". For starters, for those who just joined in, Emily has bilateral implants, and just chopped her hair off this summer (which explains why the mom honestly did not notice anything). The amazing moment for me- a mom, who is always wondering how the kids are fitting in, measuring up, succeeding or failing- it blows my mind that another mom who knows Emily from sports, school, etc., had no idea she has hearing issues. Em has the WORST hearing of the bunch.....it is so obvious to me in many of our interactions that she struggles at times (anytime there is wind, excess noise, when she's in the back seat of the car....I could go on and on), but yet to others she is the same as any other 3rd grader. These are the moments I cherish- not the fact that she is 'ordinary', but the fact that she will never be defined by her hearing loss. Some may know she has little (if NO) hearing, but it is an afterthought, not a consideration. For me deafness is not a handicap, but just part of my children I have come to know, accept, and love, in may ways ( I could write an entire blog post on this subject, and hopefully will someday).

Teacher Swap, Part One

is scheduled for this Friday. The folks from our local School District will be coming out to visit/view the private school program. I'm excited for this to happen, although not overly optimistic that they will really understand what they are seeing (Auditory Verbal Therapy). I'm hoping they see the value, and realize that it is an integral part of laying a strong foundation for future learning.

On a different note- my daughter told me my blog is just way too boring.....mainly because she is not featured enough. I intentionally tried not to talk too much about her to respect her privacy as she is getting older, but I guess now the gloves are off. I'm going to have to think of some good Delaney stories to share.

But, alas, right now I have to do my menu planning for the week- I'm already a day late and our pantry is bare. I'm 'attempting' to be really organized and do shopping just once a week....so far, I've been running out of milk by Saturday. I have figured out that when I plan out what we're eating, I've been spending a lot less money on groceries.

Very Slow Chess Match.....

That's my best description of how all of our meetings are going/have gone. I feel like every sentence uttered needs to be thought out and reviewed to see what the strategic implications are for Trey's placement. I'd say our meeting yesterday leaves us still at a friendly stalemate. Our next step is Operation Teacher Swap (OTS). We will have teachers from the district preschool attend Trey's school and see firsthand what the similarities and differences are when it comes to the school's methodology. And then, the private school teachers and myself will be attending the district preschool to do the same. Having had a child already attend the district school, I know that they do an amazing job at teaching your average preschooler, and the mildly developmentally delayed. That said, since there is a more specialized option available, I prefer Trey's current school. Hope I haven't lost any of you :)

I'll let you know all about OTS when it happens. This is good, I've been pushing for this for the last year and 1/2!

Final School District Meeting Today...

We have one last attempt with the school district before we need to elevate everything to a formal 'complaint' and then a Due Process hearing. This district has been generally willing to help us with whatever we've requested (but then we've never really asked for a whole lot), but we seem to be at a sticking point on this one. We never reached this point with the other children because during Delaney and the (first part) of Emily's schooling, we had access to a fantastic AVT/Oral preschool run through public education (the Utah School For the Deaf and Blind). I understand that the option doesn't exist the way it used to at USDB as well, so I think we moved at a good time, potentially. And, when we moved here initially we asked the school district for assistance in continuing Em's AVT education but they wouldn't budge, so we funded it ourselves, rather than fight the fight.

The good news is Trey is flourishing this year. Two weeks into school, he has become so talkative, and his vocabulary is growing daily (if not hourly). This is what I've been waiting for...... Yes, it's a combination of what we do at home, as well as the fantastic educators he has surrounding him at school, but I don't want to change what we're doing and risk having him withdraw again. So instead, I prepare for endless meetings, and read/talk/investigate FAPE, and continue to analyze what we're *really* asking for, examining the request to see if we are asking for a decked out Cadillac vs. a dependable Ford (that the school district is offering) - their analogy, not mine. In my heart, I know we're requesting the only adequate option for Trey at the moment- be it a Ford, a Cadillac, etc. For the record, I'd probably call it a "Volvo".....safe and very reliable- maybe a bit more expensive, but in the case of an educational foundation (unlike a car), necessary for some.

*As an aside- ironically enough, my husband and I both drive Fords and are quite happy w/ them.