Sporadic Thinking

This morning I got to thinking, which is pretty scarey considering how sporadic I am. My thoughts bounce all over the place like rubber balls run amok in a concrete room . (I have to say that I'm bad at prayer also as I'll start out good but suddenly find myself thinking of my shopping list, what I need to do, or if I'll have enough yarn for my next project. I used to worry about my ADD prayers but decided that God created me therefore he already knew that I would do this, thus no more guilt, just an "I'm sorry" and effort to get back on track.)

On with my thinking this morning while driving Max to school. I started thinking about Max's IEP meeting coming up, of which I heard about through Max's teacher. I have not heard from our pre-school coordinator regarding this, just that they called his teacher for the meeting and gave some dates but nobody has called me about my dates. Hmmmmmmmmm. This led me to thinking about the progress Max has made in the 17 mos. he's had his implant. How many words he has, what consonants he's making consistently and which ones he's not, what he's doing regarding sentence structure (words, adjectives, verbs, etc.), how he's come really FAR, but we still have such a long, long, way to go. Wow, that state cop car passed by really fast. Wonder what's going on......I bet that's Officer __________. He must have dropped the kids off and got a call. Or maybe he's rushing back home to ____________ (his wife). She probably doesn't go to work until 9 or so......both of their kids are in school........I wonder what it's like to have to have two hearing kids? o.k. if Max was a typical child, I'd probably have a job that I'd be going to everyday. Hmmmmmmm, I wonder if that would be a good thing or bad thing? Em still might not get to participate in a lot of extra-curricular activities cause I might be working and still get home too late to take her. I'd still have all the stuff at home to do like laundry, bills, cleaning, cooking.... I wonder if the money from my job would pay for the daycare that Max would obviously have to go to. Oh, he could go to the christian pre-school, I wonder how much it is to go there?........ Wow, the lake with the sunrise is really pretty. The water looks like a big mirror. I wish it wouldn't rain, I really wanted to go to the zoo this weekend. Em's field trip coming up is to the zoo. Hmmmmmm, maybe I should keep Max out of school that day and take him to the zoo. Ugh, I wonder if I can handle a bunch of second graders AND Max at the zoo. Plus we won't be able to wander and talk about things as well if we're with the field trip. Maybe we could walk around by ourselves? Hmmmm, that will probably hurt Em's feelings if we wander by ourselves. Plus, should I really keep him out of school to go to the zoo? Maybe he'd be better off going to school that day then the zoo. Maybe Trent can take off that day and go with us and I can be with Em and her class and he can walk around the zoo with Max,.... nah that isn't going to work. He HAS TO work, we really need money..... Whoa, there's another state cop. Hmmmmm, that's two today and I haven't seen any for at least a week. Wonder what's going on............we've really met a lot of great people on this CI journey. I have made some great new friends....and look how much I've learned.......... I really want to get Max in the booth and get his maps checked. There are all different kinds of things that can affect the maps, growth spurts (check), surgery (check), been 7 mos since we've had one (check). Hey, there's another state cop, what in the world.........I really need to get Em a warmer jacket before next week. It's really going to get cold next week, I wonder where I can get one fairly cheap but reasonable, I can't go look until tomorrow though, payday is tomorrow. I hope our school system doesn't try to give me grief about Max continuing at the oral/deaf school. I'm sure they won't, he's made A LOT of progress, but what if they think that's enough. No, it's not nearly enough....Hey cool, there's the McCain/Palin bus....I wonder if one of them (or both) of them are on that bus? That's why I've been seeing all the state cops this morning. They're trying to stay a certain distance around the bus for protection - escorting from afar. That's probably why.......Geez, Obama freaks me out.....where did all that money come from for his campaign recently? Especially since we're IN A RECESSION. That's a lot of money....who has that kind of money right now? and why are they giving him so much? That health care thing, that scares me too. What if they do socialize healthcare here? I hate to think of quotas on surgeries and procedures because of money. What if he's elected and they run out of money and won't pay anymore for Max's equipment needs? What if no second CI? No batteries, no mic covers, no coils or other stuff when the warranty runs out? Crap!!!!! What if they decide he's defective therefore the new healthcare system isn't going to take care of him and I don't have the money because the economy is whacked? OMG, what if they decide he isn't even worth it? Nah, they wouldn't do that. I don't know, it's well known that he allowed babies to die and didn't vote to keep them alive, he's also for killing innocent unborn children. Ooooh this is tooo much....Geez, 20 minutes til we get to the school. Uh oh, Max is asleep (weird, he never does this). He didn't eat much yesterday either.

Finally after all of that I turned on my CD player to STOP the sporadic thinking and just focus on nothing but musical notes. Except I need to remember to put more chapstick on Max. Can you HEAR me?

Disclaimer: Do NOT send me comments regarding your political views and why yours are right and mine might be wrong. You will be wasting your time and your energy on someone who doesn't particularly care who you are voting for and why. This is my blog and I am right on this blog. If you want to post your views then do so on your own blog.

The MOST Expensive Tube

When Max was 14 mos. old he got tubes in his ears. This is how the whole process with Max's not speaking any words, not turning his head when I called his name got started. It seemed that he could hear, but he just wouldn't talk or turn when I called his name. I remember being scared it was something on the autism spectrum, not full out autism because he was sociable other than not talking and not responding to auditory commands or his name.
So we go to an ENT at a local hospital and he says "Yes, his ears are full of fluid, that is why he is not talking, it's as if he's hearing under water." So at 14 mos. Max gets tubes in his ears. I'm guessing that the surgery for the tubes cost me around $4,000-$5,000. I'd like to give you an actual figure and not a guesstimate, but a lot has happened since this time and honestly my brain cannot possibly keep up with it all. But I'm going to assume this is a fairly good guesstimate.
Of course, the tubes don't seem to be doing the trick, he still doesn't respond and still makes no attempt to say anything. The story from there is like a tricky twisty maze, you go in one direction only to run smack into a dead-in and have to turn around try another and hope you get out of the darn thing FAST, because you're tired, thirsty and it really isn't fun anymore. So I guess I don't have to tell you it wasn't the fluid in his ears since he now has a cochlear implant. You can pretty much guess that it was a full blown hearing loss that somehow happened either after he was born, OR the hospital messed up the newborn screening to begin with.

In the middle of August, Max's first week of school I noticed that he was digging in his left ear ALOT. Everytime I cleaned that left ear I noticed that the wax or the end of the q-tip looked a little bloody. Hmmmmmmmm, ever trying to make things less severe, I assumed that he had possibly gotten a bug bite or something just right in the ear canal and scratched it. After watching him in the observation room one day during school, he really was going after that left ear. Even his teacher looked in there. That night I again cleaned it with a q-tip and sure enough that was blood. So the next day while he was at school, I asked his audiologist if she could possibly go check his ear since he keeps sticking his finger in there. She told me that he definitely had something going on in there and needed to be seen before Monday when his ENT surgeon that put the implant in (Not to be confused with our local ENT idiot) could look at it. Still pretty sure that it was bug bite I called our "papaw/doctor" for a look on Friday. He looked and was pretty shocked to find that Max had a very bad infection in the outer part of the ear, basically in the canal. Max was put on antibiotics and antibiotic ear drops. This was probably at a cost to us of $115.00. He stated that he did want Max's ENT to look at it since it was really bad and with him being an expert and all with the ears. So on Monday I take Max over to his ENT and he exclaims that yes it is really infected but everything we are doing is good so bring him back over in two weeks. That appointment cost me $54.56 (insurance will break them down and pay a small portion). So we take all the meds, ear drops, and papaw looks at it again and says, "Geez, I think it's that tube that is infected. Looks like it might have scar tissue or skin on it." O.k. STOP. Let's do a little rewind here. Tubes were put in, right tube was removed during a good ear cleaning while sedated for an ABR. Left tube fell out whatever they put it in, ear drum, but never fell out of the ear. Now back to The MOST Expensive Tube. He suggests that I take him back to Max's ENT and have him take a lookey-loo. ENT looks and says, "yes, it looks like that is what is going on, still a little inflamed, we're going to have to schedule surgery to remove it." NOOOOOOOOO, this cannot be. I have had medical bills out the wazoo with his cochlear implant surgery, getting to that surgery, my daughter's seizures, EEG's, MRI's, our sawmill went bellyup dead and we filed bankruptcy in April of this year. I have no money, no way to get any money, we are living on the edge, my deductible is $3,000.00, the job Trent's been working at is going belly up as well, he's doing odd jobs which pays odd amounts. NOOOOOOOOOOO. So surgery is scheduled. During that time I pray, I pray hard. I pray for that tube to fall out, go away, disappear. Oh and I get another bill for $54.56. Surgery day: Thursday 9/18. We were supposed to see ENT on Monday but because of the hurricane winds that wiped out S. Indiana and KY, there is no electricity anywhere so no appointment with ENT(savings: $54.56). On Thursday we get to the hospital at 9:30 am. We go through all the rigamaro and with each person I say, I'm still holding out hope that it's fallen out or can be taken out without this surgery. They all look at me like "yeah right." Just as the nurse was bringing the "happy juice" to make Max happy to be going out, I ask if the ENT could just take one more look and make sure that he can't get it out without surgery. ENT comes in, looks, and says I think we can get it. It looks like a little ball of wax blocking it. So surgery is "off". Thank goodness. I'm so happy, I'm sure we'll have to pay something but probably not $3,000.00. ENT gets telescope from operating room and he and Trent and two nurses hold Max while he tries to get the tube, and I cower outside because I don't think I can bear this. After about 5 hours, no not really more like 5 minutes but dang it felt like forever, they come out with, can't get it. It's attached. Oh holy crap. Surgery is back on they give us the "happy juice" for Max. At about 1:00 - 1:30 they come and take Max to his tube removal surgery. I cry when they take him, as usual. I've been through him being sedated or surgery 6 times now, you think I could get over that, but I can't. We wait for him to get out, only 10 - 15 little minutes, it's just a little surgery you know. Max comes out and he is furiously mad, cries, tries to nap for a minute, remembers he was violated and cries some more. ENT says that it was attached to the ear drum still, tissue on it is being sent off to biopsy, hole should close on it's own in ear drum, and gave us antibiotic drops to start putting in on day 5. Max was fine that night, riding his bike like nothing happened. Happy as a lark. I'm happy that it's out, til I get the bill I'm sure. This tube, a little bitty green thing, is the MOST Expensive Tube. Probably around $8,000-$9,000 when it's all said and done. I wish I could have had it. I'd frame it.
Can you HEAR me?