Jackson's neurologist appointment

The appointment was in Milwaukee. I don't know if I ever blogged about why we don't go to neurology here anymore, but to make a long story short we get much better treatment up there. I never really cared personally for his neuro there but he always seemed to treat J's seizures effectively so I never pushed to switch doctors. There was another doc that I met (who happens to be the head of the epilepsy program there) when we were inpatient doing long term monitoring and I would love to switch to her. Unfortunately I overheard someone scheduling an appointment with her while we were there and she is scheduling already for summer 2011!!!

It was an interesting appointment. I had an appointment scheduled for last summer but it was right after we moved and I didn't feel any pressing need to go so I pushed it back to winter. Of course, it stormed the night before the appointment and no way I was driving up there in that much snow so we finally had our over-due appointment.

Last spring, Jackson was going through some testing through an adult neurologist at an affiliated hospital who specializes in dysautonomia. Some medications were tried and failed and then they said we should follow up with peds neurology. The person who was supposed to call us never called us, and then we got busy moving, so we never followed up.

I asked our neurologist about it when we were there yesterday. I had tried in the past to get him to help out with the autonomic issues Jackson has but he has never been interested in treating anything besides seizures. He looked up the records while we were there and saw that there was one more medication that was recommended (verapamil) that we had not tried so he rx'ed that. Unfortunately the pills are too big to split for the dose Jackson needs, so we have to find someplace to compound it.

He also said that the other neuro had said we could do a skin biopsy to check for the presence of sweat glands (he does not sweat) and if there are some present we could try a cholinergic medication to possibly help him sweat. I have problems with this.

First, he is already on an anticholinergic and I have concerns that the 2 meds will cancel each other out.

Second, I do not want to put him through a skin biopsy unless there is a good reason to. He went through all that autonomic testing for what I thought was a good reason, but it just turned out that they were trying to see if the issue was a primary dysautonomia or secondary to his brain injury. Well, the geniuses came to the conclusion that it is secondary to his brain injury. Which I could have told them. Because it's pretty obvious to anyone who has any kind of common sense. So therefore, if the dysautonomia is secondary to his brain injury, would it not be a logical step to conclude that he does indeed have sweat glands, that they did not just one day disappear? Does he really need to give up pieces of his skin to figure this out?

Well, both of these reasons seemed to confuse the neurologist. I never really thought of him as not too bright before (just lacking in people-skills) but now I am questioning this. Although, after I told him both of these reasons, he did seem to agree with me on both issues...but it just took a while for the gears to turn. Plus he did not know that robinul is an anticholinergic which is somewhat frightening to me.

So now, even though she is booking for next summer already, I am thinking hard about making that switch.

Some good news!

I am happy to report that not only will Jackson be starting up respite again next week (his previous respite worker's last day was last Monday) but it will be his old respite worker, Kerry, coming back to work with him! I am excited because she was just great with Jackson personality-wise as well as being extremely competent as far as caring for him. His last respite worker was lovely and also very competent but she was a more mellow person and Jackson is more of a rough and tumble kid.

When I told Jackson she was coming next week he gave a big smile!

Not much to report, just living life.

And my computer is dead so it is not as convenient to update.  I have to get a new one since it is just as much to fix my years old one.  But right now, there is no money so no computer.  Hopefully soon! :)

Jackson's class had a trip to the high school to go swimming in the pool there.  They said he liked it a lot but only wanted to swim about 20 minutes.  I am guessing because he got cold.  He needs a super warm pool to be able to really enjoy it for more than a few minutes. 

He has a somewhat overdue neurologist appointment coming up this month, an orthopedic appointment in May, and I should make a physiatrist appointment for him soon as well.

Zoe is just exploding with words.  I tried to estimate how many she has now and it is easily over 100!  She is constantly astounding me with what she knows.  For example, we were reading a book and she loves pointing to different things in the pictures so I can tell her what they are.  She pointed to a clock so I told her it was a clock, then she noticed there was a bird on the clock so I told her that was a bird.  Then she says "cuckoo cuckoo"!  How in the world does she know that?!  I am guessing from a TV show but it really surprised me!  She is really smart.

sigh.

Once again it looks like we will be without respite.  Our respite worker is moving out of the country kind of unexpectedly.  Our last day is Apr. 19.  Hopefully they can find someone else soon, but I doubt it.  Bleh.

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