Home

  We left the hospital at 5:00. Ari's recovery went really well and we were out of there just over 24 hours after the surgery ended. Traffic was of course horrible and it took us an hours to get the 10 miles home. We have a bunch of pain killers for her to take based on her pain level, but we've only rarely ever had to give her anything too powerful and hopefully it'll be that we this time as well.

Ari ready to head home, although she did only get to watch Frozen 4 times while we were there. Of course she watched Tangled a few times as well.

We could see the Inner Harbor from our room (the glass triangle near the top right is the aquarium).

In a Room and Resting.

Surgery took a little under 2 hours. We were able to see her by 2:00. By 3:00 we were in a room in 9 North of the children's hospital building. They had to replace 2 bolts on her hardware which had come loose and were pushing against her back. We were told that went well but we haven't talked to her doctor yet. We'll get the details when we do.
   She has been doing pretty well other than having a bad reaction to the anestesia and has gotten sick three times, even with her normal anti-nausea medication. That's one of three things we need to get have happen before we can leave. Get rid of the nausea, get her to eat, get her to go to the bathroom and get her to sit up. Four things. One of four things we need to get her to do.
   I'll be sleeping in the room with her tonight. Tomorrow the hospital said we can bring Lily up to see her. Hopefully we can get things moving along. We have a change of getting her home tomorrow if everything goes well. If not, she'll be going home Friday.

Starting

Just got the call that they are starting the surgery. We went back around 11:30 and I waited with her again while they put her under. This is the 8th time I've seen this and it never gets any easier. We should get another couple of updates before the surgery is done.

Starting the Day

   We were up at 6 this morning. I only got a few hours sleep, but I'll have plenty of time to sleep after Ari gets into a room. Ari was up in time to watch one show and get dressed. We were on our way by 7. The drive wasn't  bad and we were parked by 7:40. We got checked in and waited for a while. There were a few interesting things going on. Mostly involving the families waiting in the waiting area. One even made a few under their breath comments about us not letting Ari lift some of the heavier chairs. People need to leave well enough alone. The last thing we need is for Ari's hardware to come loose any more than it already is.
   Right now we're in the pre op area. Ari is dressed and waiting for the doctors. We have a few different groups to meet with before surgery starts. We've seem Dr Ain's associate so far. Surgery is scheduled to start at 10, but we are usually done with all the prep an hour or so before. It's 20 minutes before and they are definitely not ready. Hopefully everything went well with Dr Ain's previous surgery.
   There will be some repair work this time around. A bolt came loose and needs to be fixed. This will add a little time to the surgery. I'll post here once everything gets started and we're back in the waiting area.

Hospital Prep

   After getting in one last weekend at Busch Gardens, we're getting ready for Ari's next surgery. It will be at 10:00am on July 30th (tomorrow). The doctor called and told us that some of her hardware has come loose again which is not a surprise for us really. We can see a good sized bump on her back and that usually means something is loose. This is the third time this has happened. This is always a possibility with this procedure and her bones don't seem to handle all the hardware as well as they hoped which is the best explanation they have for right now. The doctor explained it much more that that, but that's just my one sentence summary of the whole thing.
   We get to the hospital around 8:00 tomorrow morning. She'll probably head back around 9 to 9:30 and I'll take her back to be put under as usual. Surgery should start around 10 and it'll likely be a few hours since there are repairs involved this time around. Hopefully it won't be too much longer than that. The original surgery was around 8 hours. The second was around 4 hours. Most since then have been 2 hours or less. I'm guessing around three hours this time. And for those wondering, this is back surgery number 6 of somewhere around 20 total. A few more years and she'll be half way through all of this.
   Tonight we will have our usual pre hospital routine. Ari gets to pick out a restaurant and she'll get to stay up later then usual. She can't eat after midnight so we let her stay up a little later and have some snacks before going to bed. Then we need to have her up by 6 and be out the door by 7. It's only about 10 miles away, but with traffic it'll be at least 30 minutes to get to the parking garage. Probably more. I'll be keeping thinks up to date here as usual and maybe I'll get around to posting all our summer vacation pictures over the 2-3 days I'm sitting in the hospital room with Ari. Please keep her in your prayers and pray for the hardware to stay in place this time.  

The past few months

    Starting where I left off, Ari did recover fairly fast from her surgery. She was back in school that next week and picked up right where she left off. That was great. After that things started to fall apart.
   On Dec 4 (Amanda's birthday) I was laid off from DRS. A good number of engineers were laid off at that point and it came as a complete shock since we had just recently been told how good our division was doing. It seems corporate wanted to merge some of the groups and decided that they didn't need at many people. Of course, software was already struggling to get all of the work done and things became that much more difficult for the people who were still there. I still email them from time to time and things are a bit rough. I know of at least one guy who is leaving and considering how few software engineers were there, they can't really afford to lose any more. I do know that right after I left, they put out a req for a college grad to do GUI stuff. In other words, someone cheaper than me who could do a good enough job getting a basic GUI up and running for the customer, based on what I had started. They never did care much for GUIs there.
   Christmas was rough but we made sure it went well for the girls. Luckily their presents were already taken care of at this point. We cut all of our spending limits basically in half and didn't go through with a few of our plans (getting each other a joint gift of the Wii U) but we were determined to have a good Christmas despite everything else. Christmas is always a rough time in my family as it seems a lot of bad happens around that time of year for us. I love the Christmas season, but more often that now something comes up that makes it hard to enjoy. Add up enough of that over the years and I tend to get a little jumpy in December waiting for something to happen. This year it was the layoffs. I try not to keep track of it all so I'll leave everything else out.
   With the new year came a pick up in phone calls for interviews. In December I only had one interview and that was with Johns Hopkins APL. That never went anywhere and they never even responded to my emails. I ended up with a good number of phone interviews and a few in person interviews before accepting a position. The pay is good and the health benefits are about what you can expect now-a-days. Nothing great, but good enough that it won't bankrupt us. Unfortunately over the past few years that seems to be as good as anyone offers anymore. I've had company backed health insurance for 15 years now and the past three years have seen big declines in the quality of what is offered. I've seen a lot of plans over the past three years with all of the interviews I've been on and it's amazing how bad some plans have gotten and how few places even offer anything usable anymore. One plan would have cost me tens of thousands of dollars in expenses after charging me a huge amount from each paycheck (including an extra penalty for having Amanda on the plan). Not to mention all of these consumer driven plans, none of which are even usable for our situation. Still, the cost of Ari's surgeries has gone up 10x since 2011. And it only went up that much because we're hitting price limits within the plan, which I have to get the best (and most expensive) plan that is offered just to keep those limits down as low as possible.
   Enough about health insurance. Back to Ari. She has had a rough time of it at school since the new year began. She got a new assistant (the first one was fired for missing so many days) who quit after a week. So after another month or so she got her third assistant, who quit after three weeks or so. They said Ari was hard to work with. Well, she's a 5 year old with a lot of physical and mental issues. What are they expecting to happen? Coast through the day without any problems and receive an easy paycheck? The reason she needs an aid is because of the difficulties she has in class.  Unfortunately the one aid that really stuck it out with Ari passed away over the summer and they haven't found anyone really good for her since then and her behavior in class has been steadily declining but since the school never got around to telling about most of it until it was too late we never had a chance to help correct any of it. At this point, they are talking about holding Ari back. Academically she is on par. Socially, she is way behind which we knew. It seems though that her behavior at school is even worse that we see at home and I wish they would have given us more info as things happened. I'm sure their reasoning would be that same as with anything else. They don't have the budget to keep us up to date on what is going on. It always seems to come back to the budget. Even all the violations of her IEP have come back to the budget although it is still illegal to violate her IEP even if the budget comes into play.
   So here we are three months into the new year, fighting the school, me starting a new job, Ari going through more issues than even and us once again looking for a new place to live. We're still planning on renting out our house as we can't sell it and come out of it in any manageable way. We want to get out of Baltimore County as they just don't seem to put the needed funding into special needs. We never had half these problems when Ari was getting her services through Howard County and we weren't even living there. Maybe we can find a rental there. Or Carroll County, but that is getting a little far for us both to commute. I just finally got a good commute after 8 years of an hour each way.
   I guess to sum up, things are hectic again and there are a lot of changes on the way. I'm just starting to settle in to my new job, we're house/apartment hunting, I need a new car, and Ari has more going on than any of us. She's had enough going on in her life, does the county really need to make things that much harder. If it wasn't for her teacher backing us up and telling us what is really going on, I'm not sure anything would be happening for Ari. They even cut her PT back to 15 minutes a month and eliminated her OT. They said she can use scissors and zip up her jacket now, so she doesn't need OT anymore. It turns out her needs for OT and PT are based purely off of what she needs to do to get through a day at school. Not what she needs to get through the day as a whole. So that's what's been going on since her surgery. A lot of job hunting, fighting with the school and trying to keep ourselves afloat while things start to settle back into place again, at least job wise...