Jackson is a great helper!

He helps by carrying Zoe short distances on his lap.  As long as she doesn't get her head too much in his face, he is happy to help out.  What a great big brother!

Jackson's appointment at low vision clinic

Jackson had his annual appointment at Lighthouse.  Jackson has functional vision but he is considered to be Cortically Visually Impaired (CVI) due to his brain injury so he sees a low vision optometrist there. I am very happy with the doctor there.  Before we started going there Jackson was seen by a different doctor.  I am not exaggerating when I say I left that first doctor's appointment in tears (this was years ago, shortly after Jackson got out of rehab) he was so negative about his vision and future prognosis.  The guy had no clue how to measure Jackson's vision and no clue about how to deal with people.  This doctor is wonderful with him and has lots of very neat ways to figure out how well he is seeing.

So anyway, Jackson is about the same as he was last year.  He still is slightly near sided (although it may possibly be less than he was last year).  If he was getting worse she would recommend getting glasses for him again but he did not tolerate wearing them too well and the improvement would be minimal so she says it's ok for him not to have them.

His visual tracking is good, but his tracking items upwards is not as good as tracking items in the rest of the field of vision.

His eyes also still turn inward and outward, meaning they are not always working together as they should be. This is called esotropia. She says he seems to be pretty good about self correcting.  If he consistently had an inward turn or an outward turn a surgeon may be able to help improve it, but since they both go both ways there is really no way to surgically correct it.

She mentioned wanting to do a test called visual evoked potential. This will help get a clearer understanding of just how well Jackson is seeing.  She does not think he needs it now, but probably sometime in the next few years.

His overall eye health is very good.

So a good (but very long, as always) appointment.  Not so good for Lee who was hanging with the babe at home.  She took only a 5 minute nap and cried for two whole hours.  Poor daddy!!

Some cuteness for you

Look how big and pretty she is getting!

Here is a shot of her wearing the same outfit as in a previous post.  You can really see how much she has grown! Her jeans were all cuffed back then and now they are just right!

Happy girl!

Here she is driving her "car".

She loves playing in her bath tub!  She will drag it out to the living room all the way from her bedroom and sit in it.  We got the hat out of the $1 bin at Target...best $1 spent ever!

We gave her Jackson's old backpack to play with. He used to play with it when he was her age before he got sick.  She loves it!  You can see Grandpa Chuck in the background. 

I have a picture of Jackson wearing the same backpack that is very similar to this one of Zoe.  He was a little younger in the picture though, about 14 months to Zoe's nearly 18 months.

She loves her doll and she also has a little mouse in her hand that she was loving on.  It used to be a cat toy! She runs around with it saying "mouse!"

She always likes to run around with no clothes on for a while before bed time.  Last night she wanted to put on her hat and mittens.  It was just too cute that I had to take a pic.  But she was really tired so the camera got her all kinds of upset.  Still worth it though!

History of Rock 'n' Roll

Since Lee works a lot of late nights as a realtor and Zoe goes to bed pretty early, I get to hang out with Jackson alone for about an hour and a half before he goes to bed.  Or sometimes an hour because he does get kind of sleepy early.  I actually LOVE this time with him since Zoe is such an attention hog and it can be hard to make a good connection with him if there is a lot of commotion and noise going on.  So this time is precious to me because we can be together without these distractions.  He is such a sweetie, and I love seeing the way his mind works and what he likes and dislikes.

Jackson loves music more than anything else in the world.  I am so thankful that he has his iPod to keep him entertained but sometimes it can be difficult to figure out what music to put on it , especially now that he is not a little kid anymore.  He is outgrowing some of the music on there, and I am trying to find more age-appropriate music for him. 

I recently recorded the series "History of Rock 'N' Roll" and we have been watching it together in the evenings. We have a deal that if he can tell me that he likes a song, I will write it down and then download it to his iPod.  He has GREAT taste in music!  He likes all sorts of stuff...Bill Haley, Little Richard, Ray Charles, Chuck Barry, Rolling Stones, Beatles, Bob Dylan, Jimmy Hendrix, James Brown.  I also like seeing him try to make up his mind on if something is worthy of his iPod.  I asked him if he liked a Janis Joplin song and he did not respond for a while...he was just listening and then a minute or two later he indicated he liked it.  He did not want any Mamas and the Papas or Byrds or Righteous Brothers (told you he had good taste!).

Conversation with Zoe

Zoe: eh eh eh eh eh eh (this is the somewhat annoying sound she makes when she wants something)

Me: What do you want, babe?

Zoe:  eh eh eh eh eh (pointing at the window)

Me:  Do you want to look out the window?

Zoe: Yeah!!

Me: Can you tell me with words?  Can you say "window"?

Zoe: Peeeeese!!!? (We are working on saying "please".)

Me: Oh you said "please"!  That is a very nice way to ask, but can you say "window"?

Zoe: Yeah!

Me:  Can you say window?

Zoe:  Yeah!

Me:  Can you say window?

Zoe: Alright!!!

I gave up and helped her look out the window.

The truth about parenting a child with special needs

The truth about parenting a child with special needs

This article pretty much hits the nail right on the head. It's short, and it's bitter, and it's exactly how I feel most of the time.

Cute things Zoe says

My favorite things lately have been her exclaimations of happiness, such as "COOL!!", "OKAY!", and "ALRIGHT!!".  It is hilarious to see such a little person shouting these things.

Of course, there is the ever popular "Oh man!" that she will say when she is upset...such as when I am about to change her diaper, which she hates for some reason.

And when she talks on the phone she says "hew-wo" (hello) and it comes out just like Elmer Fudd would say it. :)

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.