The way her mind works...

It really amazes me sometimes!  Her big thing recently has been pointing to her ear when she hears something and making a question sound to ask what it is.  Or sometimes she will tell me what she thinks it is; for example, pointing to her ear and saying "dog" or "car". 

Yesterday she asked me what a sound was.  It was a car door closing outside.  When I told her that, she said "Da!" because she thought it was Lee coming home.

And this morning she did a different thing with her ear.  She cupped her hand over her ear and she made a sound like static.  She was hearing Jackson's white noise machine over the monitor (we turn the monitor up pretty loud so we can be sure to hear him if he makes noise) and wanted to know what it was.

Jackson's Field Trip

Jackson's school went to the children's museum.  Lee went with them since otherwise they would have had to hire a nurse to go with them to give him his feeds and meds during the trip.  Lee said there were a couple things there he really liked but that mostly he liked it when Lee was next to him singing to him.

Here are a few pics...cute!!

Playing the drums

Making the jellyfish bubble

More percussion

What's happening with us

Zoe just had a serious word explosion and now says so many new things. "Up" is a huge one and "help" is another one I hear a lot. She is so smart and knows so much!! I was changing her after she got up this morning and she heard Lee in the other room. She looked at me wanting to know what it was she heard. I said "that's Daddy". She then kissed her hand and made a throwing motion to throw it to Daddy! I said, "That is so sweet, Daddy will be tickled to hear about that". Then she started tickling herself!!

And right this minute Jackson is watching Super Why on TV. It's an episode with Santa in it. Zoe just looked at the TV and said "Ho ho ho"!

I don't think the jello thing with the meds is going to work out unfortunately. The good news is that today I got some clarification on our new insurance plan and it is not as bad as I thought it would be. There is a big deductible that has to be met by the whole family and after that, everything is covered 100%. Jackson will mostly meet the whole deductible himself (which we will be reimbursed by his settlement for) and then everything for the whole family is covered 100%. It's only been 20 days and we have nearly half the deductible met already.

Jackson is doing well for the most part. He had a big barf at school today so I had to wash his chair down when he came home. But that is pretty rare. He is going on a field trip to the children's museum Friday and Lee is going with them. Hopefully he will have fun, that kind of thing is not really his cup of tea.

He finally got a new respite worker to come and play with him once a week. She seems very nice. I was impressed that she could tell that when she holds 2 books out for him to choose and he doesn't make a choice, that means he doesn't like his choices and wants different books. I had not mentioned that to her, and it is definitely not something that everyone gets about him. So I think she will probably be a good fit for him.

Thank you Tiffany!

How did we live before the internet? Seriously!!

One of my online friends (a friend who I know only online, I have never met in person, and I am not likely ever to meet in person) saw my blog post about the zantac and gave me a great tip...JELLO SHOTS!! She said make them with less water so they gel up more firmly. Make half with a dose of zantac in them and half without. Every day give her one without the medicine and one with the medicine. I had a little extra zantac left after our failed experiment and a box of jello (sugar free, not even the real stuff!) so I gave it a try.

Miss pickypants did not even want to try the first bite of jello but I did get her to eat a little and she loved it and ate the rest quickly. But the real test came after dinner when it was time for the one with the medicine in it. Not only did she eat it without any problems, she actually asked for more!!

We shall see if she continues to like it. She is kind of funny about what she will eat and sometimes decides to refuse things she loved before. I made 5 medicine doses. So if she does take all the doses, then next month we can go ahead and buy the zantac again instead of the pepcid.

The failed experiment

We are on a sucky new insurance plan where the cost of rx meds count toward the VERY HIGH deductible.  We are pretty broke right now and I called the doctor to ask if the was anything OTC that Zoe could take for her reflux.  They said not at her age but that Zantac would be cheaper.  I specifically asked for something other than zantac when Zoe was first prescribed meds since I knew that stuff tastes terrible and she is so picky and stubborn.  She has been taking her pepcid very nicely but it is expensive so I said we would try the zantac.

It's been awful.  She mostly won't take it, she will spit it right out.  I have tried watering it down and even mixing it with chocolate syrup.  There is no way to make her take it.  So she has been getting crankier and crankier.  Today she would not eat anything for lunch at all.  She only wants to nurse all the time, even more than usual, and that is already a lot!  She cries a lot and whines a lot.  She gets hiccups all the time and she chokes up stuff more too.

So we have to bite the bullet and go back to the pepcid.  Just another reason why insurance sucks.

My adventures in bureaucracy

We have been trying to get Jackson on a medicaid waiver here in Illinois for years. A waiver is for people who make too much for medicaid but have qualifying issues so that they waive the income requirement.  Even though he requires total care and has extensive medical and developmental issues, we have had absolutely no luck.  Illinois is one of the very worst states (I think it is ranked 48 out of 50 or something like that) for medicaid and I can certainly see why.  I know people online who have kids similar to Jackson who qualify for their state's program easily, and even some who have kids arguably much less affected than Jackson qualify without problems or even much of a wait.  Even some states that have a waiting list have loopholes to get the more severe kids on.  Anyway, the way it works here (if you don't qualify for the medically fragile/technology dependent waiver) is that you fill out a PUNS survey (Prioritization of Unmet Needs) and complete things like a neuropsych eval and letters from teachers, doctors, therapists, etc.  Then (even though our PUNS said we needed help immediately) the PUNS goes into a pool.  As funding becomes available, PUNS are randomly drawn from the pool.  There is no guarantee that his PUNS will ever be drawn and only if it was drawn can he then apply for the waiver, which he may or may not qualify for.  We work with an agency called Community Alternatives Unlimited to get this far in the process.  One thing that was killing me was that our caseworker kept saying that he would have a much better chance of getting the waiver if he had acting-out behaviors such as biting, hitting, throwing things, etc.  Hello!!!!!!  If he could actually physically do any of these things we may not even be applying for the freaking waiver in the first place!!!  DUH!

So anyway, I am pretty sure he will never ever get this waiver.  Whatever.  But every year we have to update our PUNS so stay in the pool so I do.  And every year the caseworker sends a letter with our paperwork that encourages me to contact the Department of Rehabilitation Services to inquire about In-Home Support Services and Respite Services.  So just for kicks this year I actually tried.

First I called the number he gave me on the letter.  I got a message saying that they are very busy with phone calls and to try calling during "non-peak" hours.  Non-peak hours are apparently all day Thursday and Friday and also daily from 8-9am. Then they said "thank you for calling" and hung up on me.  Ok.  So I try back the next day at 8:30.  They played me the same message (even though it was non-peak hours) and again hung up on me.  Grrrr.  I called back and just keep pushing 0 until I got a different thing.  It said that 17 callers were in front of me and I had an approximate wait time of 4 minutes.  That did not sound quite right to me but I stayed on hold just to see what would happen.  4 minutes came and went.  15 minutes.  30 minutes.  45 minutes.  Then, I actually got a person!

So I told her what I was calling for, and she said "oh, I can't help you with that."  Ha ha.  She did take my address and look up the number that I should call.  She gave me a number to the "Skokie" Rehabilitation Office, which had a 773 area code so it was actually in Chicago.  She told me that that was a wonderful office that had really great people working there. 

Ok.  So I give them a call.  Gotta say, the guy who answered the phone did not sound wonderful nor did he seem like he was great or even very happy that I was calling.  He started taking our info but when I got to our address, he said that "this office does not service that area."  Ha ha.  So he is looking up what office I am actually supposed to call.  He told me I needed to call the Waukegan office.  Well, I don't know exactly where Waukegan is but I know it sounds far away and it is certainly farther than his office.  But the number had our same area code so I guess it could be possibly possible that he was giving me correct info.

I call the number.  They ask me if I am in Lake county.  Uhhhhh...no.  Not off to a good start.  They said they would get someone to call me back.  Good thing I wasn't holding my breath since I am still waiting and it's been nearly 2 weeks.  Meanwhile, while they were trying to get rid of me, I was on the DRS website looking up for myself which office I am supposed to call and sure enough, it was the first one. Ha ha.

I am planning to try again but surprisingly, I just haven't gotten my motivation back up yet.  Sigh.