Jackson Rides a Trike!

I can't seem to figure out how to get the video directly on this page but you should be able to click this link and see it. I love it! Totally cute!!

Jackson's Parent Teacher Conference

The school year seems to be going fairly well for him.  He is getting used to his classroom teacher again (she was out a few months for maternity leave). 

They are looking for ways for him to be more independent with communication, and ways he can access a switch more independently.  We are still waiting on an extended trial of the PRC Eco 2 eye gaze communication device.  Hopefully when we do try it out we can find some really fun and motivating activities for him to help him learn how to use it.  They are also doing something interesting with helping him to be able to spell out words (even though he may not even know his alphabet yet, and he certainly wouldn't know how to spell much) but she feels it is a meaningful activity for him and he seems to be interested in it.

He gets PE/PT every day at his school, which is something that would not be happening if we stayed in Chicago...in fact, many Chicago schools do not have PE at all!!!!  About 3 days a week he is in a stander doing activities during that period.  The other two days they have been using his gait trainer.  He likes being in his gait trainer but she has not been successful in getting him to take any steps by himself.  And just this past week, they tried him on an adapted tricycle.  After some considerable trial and error and a lot of assistance they were able to get him moving and he really loved it!  She said his smile lit up the room!  She said she would take some video next time and email it to me.  I am very excited to see it.

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.

Christmas 2009

It was nice. My mom, her husband, and my brother came into town to spend the holiday with us. Jackson was really sleepy Christmas morning so we only opened some of his presents before he fell asleep and then saved the rest for later on when he was feeling more awake. His big present was a twin sized futon (that he is lying on in these pics) so he can be off the floor but still lie flat. He also got a new ipod (his was very old and wouldn't hold a charge) that has video capabilities. He got a computer game and some clothes, a little toy dinosaur (that I can switch-adapt when I find my soldering kit), and a lot of books. You can see he could barely keep his eyes open in this last picture. That's when we decided to save the rest of his presents for later.

Zoe was so funny. She got the first thing out of her stocking ( a big flower) and she was happy as could be with it, then wandered off to play not realizing there was a lot more. She got a rocking Rody horse, a Tinkerbell chair, a play tent, some clothes, an aquadoodle, and a big bead maze toy. She was completely overstimulated and also happened to be getting her molars in so she did have a few melt-downs, but overall she enjoyed all the attention.

The bead maze: It was to be Jackson's present 5 years ago. It was ordered before he got sick and it came while he was in the hospital. He was pretty much unconcious during Christmas that year and it quickly became apparent that he was not going to be playing with it. We just put it away in the basement still in its original packaging where it remained until this year. I'm glad that we finally have a use for it but it is a bit bittersweet as I am sure you can imagine.

Anyway, I thought I'd show off this cute picture of Jackson (for Christmas cards) since he was sleeping for the pics on Christmas day.

Also, I apologize for the way the pics are arranged on the page...blogger changed something a while back and I am finding it really hard to get things right with the layout anymore. :(

Boo, Blogger, boo!!! :(

Jackson's School Picture

If you have been reading this blog for a while, you know it is nearly impossible to get a good school picture of Jackson.  The first one this year came out pretty bad so we did retakes.  The retakes came out pretty decent.  His teacher wrote to me that you could see her in the background of the picture because she was behind his chair trying to hold his head steady and get him to laugh.  The photographer had told her that he couldn't see her but he was mistaken.  She called the company and they told her that they could airbrush her out of it if we called them. 

I didn't even notice her back there until I read her note.   Lee and I both think it was really sweet of her to go the extra mile to try to get a good picture so I think we are going to keep the ones where you can sort of see her.

I don't even know if I posted his pics from last year.  Both the initial pics and the retakes were not good at all.

It's been a while...

I know...I just didn't feel like blogging. I still don't actually, but I think it is time for an update.

Zoe is doing very well.  She is signing like crazy and starting to talk a lot too.  I'll try to list all the words she says/signs:

• milk- she both says and signs this (although it sounds kind of like "no" when she says it).  We have a sign for milk (meaning mama's milk) and cup (meaning milk in a cup).
• mum and da- she says but not signs these
• banana- signs
• water- she signs this very cutely.  It is supposed to be a "W" tapped on the chin but she does it by sticking her index finger in her mouth.
• no- she says this but also does a very funny hand negative hand waving, so not a sign exactly but you definitely get her meaning. She will tell on herself when she is doing something she knows she shouldn't be doing...she will say "no, no, no" while she goes ahead and does it.  She also says no to the dog when she thinks he is bad.  And when I want to change her diaper she will tell me no and sometimes even run away and/or hide!
• good night- she says this.  It actually comes out more like "nigh" and she uses it for both good night and good-bye (which she refuses to say).
• hi- she says this relentlessly and waves too.  She will say it to anyone at anytime and also to no one in particular.  And you better say hi back!

• cat- she says this and can also tell you what a cat says (mostly "meow" but sometimes "hi").
• dog-she says this and can tell you what a dog says (mostly panting).
• more- signs
• cookie- signs it, but kind of funny...I still understand her though.
• animals sounds- she can tell you what a monkey says, what a chicken says, what a cow says.
• eat- she says and signs it
• eggs- she says it
• car- says and signs
• ball- says it mostly but is starting to sign it
• book- signs it
• knock knock-she will say this, mostly when she is knocking on something

That's all I can think of for now, but I might come back to add some later if I think of more.

Here are a couple cute shots of when she was hanging with Jackson playing peek-a-boo.

Jackson is doing relatively well.  Since it is getting colder, he is having a rougher time in general.  He is enjoying his school and gets very tired on school days.  He is happy about finally getting his room painted and then decorated in his space theme.  We got it primed last weekend and will hopefully finish painting this coming weekend.  He has been growing quite a bit in the last few months and needs a lot of new clothes.  He is a size 7-8 now!

Unfortunately our school district has a new inclusion plan and there is a very real possibility that Jackson's school will be closed in the next few years.  Yep, the school that we moved to this house for.  The parents at the school are obviously angry and upset and it seems like they are fairly organized and definitely ready to fight in any way they can.  I am not sure if there is anything that can be done about it but if there is, hopefully together we will all find a way. 

Our Thanksgiving

It was a nice quiet day, just the 4 of us.  We had dinner early.  Jackson did not feel like tasting anything (he wanted to try quite a few different things last year), which is absolutely fine with us.  Zoe is pretty much only willing to feed herself (rather than us feed her) so what she wanted to eat was limited.  She did have a grand old time playing with her spoon though.  It was wonderful to have Lee around all day!

No Black Friday shopping for us.  Well, I may see if there are any online deals to be had, but I am certainly not up for going out to fight the crowds. 

Zoe has been sleeping pretty well through the night recently.  She usually gets up between 4 and 5 for milk but then gets up a little too early (before 6) for good.  Today she went back down and then slept until 6:40 so that was a wonderful thing!

We are painting Jackson's room this weekend, and then we need to think about organizing it.  We have the coolest wall stickers to put up.  He decided that he wanted a space theme this time.  It will be really neat when we get it all done.

Finally a new Jackson video!

Come and see what Jackson did today!  I am so proud of him!
http://www.jacksonpresleydiamond.com/videos.htm

Happiest baby in the world!

Yep, I am talking about Zoe (AKA Miss Crankypants)!  She had her happiest day ever today.  She also started reflux meds today.  Coincidence?  I don't think so! 

It is seriously like a totally different baby.  She played so nicely today, without her normal crying at the drop of a hat.  In fact, she didn't really cry at all or make her usual angry noises.  I would not have thought the meds would have made such a dramatic difference, especially this quickly.  I just hope it keeps up.

Update on Zoe

Zoe had her well-child visit at the new pediatrician last week.  She is 20 lbs (I thought she would be more) and 30 inches.  She is doing well for the most part.  The doctor thinks she may have some reflux so he rx'ed her some meds.  Unfortunately we are going on COBRA this month and it hasn't kicked in yet so we can't get the meds until it does.  (Lee's mortgage company got bought out so we have to COBRA for one month and starting new policy next month.) 

The bad part was that Zoe tested high for lead (14.5) and we went back today for a retest.  The retest was a lot better(10.6) but still higher than normal.  Now we have to go back in 4 weeks and test again.  We do live in an older home (our old house was also old) so that is a possibility.  The paint here is not peeling, in fact the previous owner had the place coated with a heavy coat of paint recently so I doubt it is that.  The paint in the old house was peely, but she did not get around much back then so I'm not sure if I think it could be that.  Both houses had the plumbing replaced fairly recently so it is probably not that.  One thing the lab person said is that newspapers are printed with lead ink and she is always grabbing for our newspapers.  I really doubted this and as I suspected, it is just another medical "professional" who does not know what she is talking about (see article). It could be one of her toys or really anything.  Hopefully, in 4 weeks the levels will be better still and we can stop worrying.


In other news...she is really walking good now!  She loves to tell people "hi" and wave to them when we are out and about.  It's very funny, she is one friendly kid!  She is very interested in body parts, especially on the face.  The only one she can say is "eye" so everything is an eye.  She will point to your nose and say eye, point to your mouth and say eye, and yes she will also point to eyes and say eye.  Bellybuttons are eyes, flowers are eyes, everything that is remotely like an eye is "eye".  She will turn through the pages of her books and point out all the eyes. 

She has learned to say "no" and she says it with a negative hand wave to help get her point across. Hilarious!! (Note:  I would have put a video here but blogger changed recently and I can't figure it out right now...grrr!!!  How annoying!!!)