Tuesday, November 25, 2008

A Plethora of Updates

Let's see, its been a while since I updated. So I'll try to keep it brief and give you it to you in quick little points! At least I'll try too!

Last Thursday we had our first Preschool Parent/Teacher/Therapist conference. I'll admit I was very nervous about this. But all in all, it went well. They say Daniel is adapting well with one exception- Daniel is a social butterfly. That is the kind way to put it, the other way would be to say that my child is "nosey"! I like to call him "inquisitive" He is more worried about what everyone else is doing than what he should be doing! But according to his "report card" he is on track for the year.
We will be bringing in his power wheelchair at the beginning of the year and he will be working on that. Also his Pony walker - we will bring in twice a week so that he can work with that and learn to venture OUT of the classroom and out of Ms. Mills safety zone. :) Daniel doesn't like to be away from his teacher or a certain aide that is in the room!

On Friday, Lonnie and I got to have a date night. Daniel got a wish last year from Rainbow Connection in Michigan and since then we get free tickets to different events. We have been able to attend things that normally we wouldn't be able too. Sports games, The Wiggles, and different little shows. The one Lonnie & I went to with a couple friends was "Beatlemania". Lonnie loves the Beatles so he really enjoyed the time.

Daniel is also scheduled for a 23 hr. VMR EEG(video monitoring room- EEG) in the middle of December. Which means another trip to the hospital and an overnight stay. Another 45 minutes of screaming to get all the electrodes hooked up and attached to the recorder. Then another 23 hours to sit in a hospital room with Daniel not moving off the bed because the video camera has to be able to video tape him for the whole time. Another 23 hours where no one but Daniel can sleep as we have to make sure that if he has a "weird" movement or anything suspicious that might be considered a seizure we have to mash the button to mark it on the video.

ABR - I watch the other parent's blogs of their journey through ABR, who began at the same time as Daniel (October 2008) and I always feel like well if their child is making progress why isn't mine? I know don't compare your child with others. This is easier said than done. Even with all my preaching in past blogs, that I am OK with how Daniel is and how he isn't doing certain things. And I am, but it still stings and I think it always will to see other children that are younger or the same age as Daniel and they are doing things that he can't. Its not because I'm tired of doing these things for him, its because I don't want HIM to see that he is different. Anyways, back to ABR. We are continuing to do our ABR, and I will say it is a difficult thing to get all the hours in on top of everything else Daniel has going on. As I said some parents are noticing lists of things. These are the things I have noticed with Daniel. His chest seems fuller, thicker. He is using two hands a lot more. The other night while I was laying down and Daniel was kneeling beside me with his forearms on my chest he pushed himself up to straight arms. His upper body seems to be getting slightly stronger. Now are they because of ABR or is it just happening at the same time and its purely a coincidence? This I can't tell you, but I sure as heck am not going to stop what we are doing because something seems to be working. Might be slow, but still ......this is not a sprint, this is a journey. He might not reach goals as quickly as some, but he will in Daniel time. And when he does we'll all be there to cheer him on.

Went out shopping this weekend to two stores. TWO. And both places either Lonnie or I said something to someone who was staring. I mean jeez....have you people NEVER seen a child in a wheelchair? Lonnie was probably a little more tactful than I was. Go figure right?! This lady was staring at Daniel, and there was no mistaking it. I simply looked at her and said "Yep, a little boy in a wheelchair.....pretty frickin' amazing eh?!" Lonnie was about half way down the aisle behind us and he said what's the problem? I simply said the lady was nosy and that I had to explain that it was a boy in a wheelchair, and he said "oh ok". Like its typical to have to explain.
Then Lonnie saw someone staring as we were walking down the aisle and said to her "Are there any questions I can answer for you?". Now usually he'll say this and he'll just keep walking but this time we kept eye contact with the lady until she answered him. LOL She actually kind of just looked at him like Oh crap, which way can I run?!? then she answered him by shaking her head no. Needless to say, I was done shopping at that point and just felt it better we go home cause one of us would probably harm the next person who even remotely looked our way! Now why can't most people be like the guy in the grocery store who was walking towards us, saw Daniel was looking at him and he smiled, waved to Daniel and spoke directly to Daniel "How you doing big guy" and walked on passed. He obviously was raised by someone who taught him manners!!

Potty training- We get up every morning and Daniel goes pee pee on the potty. I'm kind of just getting him use to sitting there every morning. He generally wakes up dry so I know he has to go, so we sit and read a book or count our toes until he pees. I don't know about anybody else's kid, but every time Daniel pees he does a whole body shiver so I know each and every time!! During the Christmas break at school we will be doing the actual "training" as we have no therapies for that two week period and we should be home most of the time. So starting at the beginning of December we will do our hourly diaper checks and right them down in a journal. I am very excited to attempt this as I think it will be huge for Daniel.

We have been working on our eBay store. Just another little way to keep me busy and also get a little extra money to go towards Daniel's therapy expenses. So, if you would like to take a look, or send the link on to anyone else to help our that would be greatly appreciated. Custom orders are welcome, and if there are colors or certain things you'd like but don't see on there, just send me a message and we can figure it out. I'm hoping this will help with at least part of the costs for ABR in February. The link for the store (4 x 4 fabrics and more) is on the side bar also.

Daniel's therapies continue to go well. He still does 2 x a week of OT, 2x a week of PT and 2x a week of speech/augmentative. All of this on top of his ABR and his 5x a week of preschool. Busy boy!! And I want to look into hippotherapy and more swim therapy also. Might as well dream that there are endless hours in the day right?!

We seem to have a sick little boy the past couple of days. He is running a low grade fever (but fevers suck when you're epileptic) and a bit of a runny nose. Needless to say he has missed school and therapy this week. Just wish that other parents realize that when your child is sick it is BEST FOR EVERYONE to keep them home. Don't send them to school or therapy so that they then can cough and hack and sneeze all over everything including the therapist and teacher who then will pass it to the next child! Nothing is more irritating then sitting in the lobby waiting for your turn and seeing a parent hauling in their visibly sick child for therapy. WHAT ARE YOU THINKING??!!


Ellen said...

Hi. I'm a newcomer here. I am so impressed you have toilet trained. Max is almost 6, and we haven't had much luck. I HATE when people stare at Max, and I'll be in-their-face, too and say things like, "Is there a reason you're staring?" It gets my goat.

I totally recommend hippotherapy, if you can fit it into the schedule. It's fun for the kids and it really works their muscles. I think it really helped my Max learn how to walk. It also taught him to hold onto something!

I hope he feels better.

Bird said...

Wow. I think that Lonnie handled that amazing. I'm a teacher at heart and suspect that I'll be giving people lectures on CP in the years to come. The world better watch out!

I know what you mean about younger kids doing more than yours. For me, I'll read a blog and I feel like the kid was born yesterday and they're doing a million more things than Charlie. Sucks. But. . . I guess that's just how it is.

I really want to get Charlie into a pool as well. I thought about writing to a local place and seeing if they would let us come. Can't hurt to ask, right? In the summer, my husband's father has a pool, but right now it is WAY too chilly for an outdoor pool.

Justinich Family said...

We just had Evan's preschool conference also. I will post about it on my blog so check it out. Good luck with the potty training. Evan is not quite there yet but that is fine. The staring is so annoying. Sometimes if I catch someone staring at Evan then I stare at their kids, see how they like it.

Jacolyn said...

Mel, I love the way you and Lonnie deal with the stares. I wish I was that brave. I'm going to try the "Do you have any questions I can answer" next time.

Hey, I'm always comparing Grace to her peers at CE. I try not to because it seems to weigh me down...but it's so hard. I love seeing all the children progress but question everything...why is Grace not doing that!! What am I doing wrong..well you know...we can never do enough :)

Love the hats on ebay!!

Jennifer said...

I have been sick the last couple of days because some CP Mom didn't tell the therapist that their kid was sick. Tyse's therapist ended up getting sick, giving it to Tyse and now I have it. Most likely, I will be enjoying Thanksgiving Dinner in bed. I'm not too happy about that! I wish I could get hold of that Mom and scream!

Sara said...

I hope your little guy feels better soon! Thank you so much for the sweet comments on my blog for my sister's baby. I am almost done with the package for Daniel too. Hope he likes cars!! Tanner helped me pick stuff out for him- lol!