Tuesday, September 30, 2008

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......)

Monday, September 29, 2008

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 :)

Sunday, September 28, 2008

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.

Wednesday, September 24, 2008

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).

Tuesday, September 23, 2008

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.

Friday, September 19, 2008

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!

Thursday, September 18, 2008

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.

Wednesday, September 17, 2008

Bed Bugs and Shooting Stars

"Goodnight, Sleep Tight.....um.....oh yeah I hope you have sweet dreams about bed bugs"

As much as you hope your children learn and grow, etc., I also hope to not forget all the funny 'mistakes' along the way. The little expressions that are so familiar, that only a child can totally mix up - LOL.

I was also told (by Jake) that if he saw a shooting star, he would wish that everyone would do anything he asked. ALL the time. He then said if he saw another one he'd wish for a tree that grew $1,000 bills (which he said he'd share with me, of course). Jake shares all kinds of things with me on our trip back and forth from Trey's school (1/2 hour each way). The trip to school is LOUD and chaotic, but the trip home is always just Jake and I chatting about everything under the sun. Today he told me a friend from school has a $100 bill. He got it from a building called a bank, that just hands out money. He said he'd like to visit and get a $100 bill.......if only life were that simple.

Tuesday, September 16, 2008

Math Schmath

Sorry it's been so long- I've been busy w/ my (I mean MY DAUGHTER'S) Math homework. I didn't even like Math when *I* was in school, but now that's it is her homework, I really don't like it. Her Math book really explains nothing, and trying to remember what the Commutative Property vs. the Associative Property vs. the umpteen other properties are, is hard work. She also had roughly 2 hours of Math homework....now if I (or she) were a Math whiz, I'm sure it would not have taken so long, but it was definitely never my strongest subject. I did fine, but I had to work at it (unlike History, English, etc.) I was a bit dismayed to find that even though I checked her homework thoroughly, she still missed a few. Maybe it's time for her Dad to step in on the Math-LOL.

Anyway- we have our big school district meeting on Thursday. Hopefully this is it!

Monday, September 15, 2008

What we did this weekend?

Soccer Game of the Week(end): the Gauchos vs. the Coyotes

Trey's first game (we're not counting last weekends because he refused to play :)

As you can see, he lost interest at certain points, but finished strong. I only have one picture of Jake in this batch. I took a lot of him the weekend before, since he was one of the three players who actually stepped on to the field.

We had 3 soccer games on Saturday. No tears, lots of goals, and sunshine/90 degree weather. So far, Fall soccer is going just fine!

Friday, September 12, 2008

Happy Birthday to Me (yesterday)

My birthday present to myself was skipping a day of posting :)
But, birthday over, post to come.....How's that for a tease-LOL

Wednesday, September 10, 2008

School district update (as well as ANOTHER broken battery)...

School District-

I'm not sure if I ever updated after our meeting last Friday. It was a shortish meeting (45 minutes or so), and basically the school district still feels strongly that they can teach Trey in their special ed. preschool. However, they did concede that with his frequent hearing fluctuations they would need to have an audiologist available, who is able to map/program cochlear implants on the fly. This will be difficult to work out since I already know that anyone from this area/district has to travel 30 minutes to find an Audiologist who can handle cochlear implant needs. We've also requested that the preschool teacher and SLP utilize Auditory Verbal technique in their teaching process- I'm not sure that can be accomplished either. I love both individuals, but they are not specifically trained in deaf education or more specifically AVT. So, we're meeting again next week to see what changes they have made to the existing, unapproved IEP.


Rob got a call from Em's school yesterday stating that her implant was broken. Freak out moment- Call our trusty Audiologist at the private school and she immediately orders a new cochlear implant. However, when Emily gets home we realize it is really *only* the battery (second one in 3 days....) I call Advanced Bionics and vent with them, and they agree that something is not working as it should in terms of battery longevity, and they are sending me two replacement batteries. I will be sending in the two that have broken the most recently so they can inspect them and see why they are breaking so easily. Yay Advanced Bionics.

Emily's FM system appears to not be functioning properly, so that needs to be taken care of as well. They are going to send someone out from another school district to look into it.

I think that's it for now!

Monday, September 8, 2008

Give Me A Break......

actually give me NO more breaks. While visiting friends during our soccer weekend in Seattle, Emily was playing nerf basketball w/ her friend. Somehow her implant fell off her head on to the hardwood floors, breaking one of our brand new batteries. I wanted to cry. As of right now we have exactly four batteries for four implants. And no additional funds to replace the newly purchased battery. Why on earth are $150 batteries so DARN (insert word of choice there) breakable. In the stress of the moment I ended up getting very angry w/ Emily. But for what??? For playing basketball, for being a typical 8 year old girl. So unfair, so I quickly apologized and gave her a hug. I really should yell at the battery (or the makers of the battery).

I have a bag right now of 7 broken CI batteries. At anywhere from $100-$150 each, that's close to $1,000 gone this year. Ouch.

I will be sending them into AB, and requesting at least a few replacement batteries- sheesh.

Friday, September 5, 2008

Trey's First Day of School/Meeting w/ school district

Trey had his first day of Pre-K yesterday. He now goes to school from 9-2 and has the same teacher he had for summer school, which is great :) He had a very uneventful first day, so not much to report. I have some cute pictures to upload later this afternoon.

We *finally* have a meeting w/ the school district....TODAY! I'll update after the meeting w/ how receptive they are to 'helping' Trey attend our school of choice. I'm still hoping they will realize that by doing the right things now, they are only helping themselves later, in terms of what interventions will be necessary throughout Trey's school career. It makes complete sense to me, but I know sometimes it is difficult to view these things without the budget weighing heavily into the decision making process, and it is a tough year this year budget-wise for the district. Of course, that is not stopping them from putting in an all turf soccer field and new soccer mini complex within the district- I'm going to try not to go there-LOL>

The first week of school has been exciting, crazy, and exhausting. This new start time for middle school (bus pick-up at 7:10 am), is killing me....I'm sure Delaney is not appreciating it too much either. But, I'm sure once we adjust it will be just fine. And, it only gets worse in high school- Bummer! On a GREAT note, I actually have an hour and 15 minutes every day all to myself.

That's it for now. Hopefully I'll be back later w/ FANTASTIC news!

Tuesday, September 2, 2008

First day of school in pictures....

Delaney- day 1 of middle school

Emily- Day one, 3rd grade

Trey- almost there.....

Jake - day one, Kindergarten!
I'm not sure if this link will work, but if it does, here, http://www.photoshopshowcase.com/ViewFlashMedia.aspx?AID=160595&AT=3, are school pictures of Jake, Emily, and Delaney. You'll have to wait for Trey's since he does not start school until Thursday.

Back To School TODAY!

Well, except for Trey, but that's o.k. 3 out of 4 isn't so bad :) I have taken the obligatory back to school pictures and I'll get them up in a bit. Everything went smoothly until I realized Delaney did not know her bus number and we had made no plan for getting home from school. Oops.....details, details. I'll be meeting her at the middle school for a ride home today :)

More details on first day excitement to follow....