Friday, March 7, 2008

We Are Back From Nowhere

ok, so we've been slacking lately.
I got the emails asking if everything was ok.
So I figure that I have to sit and write what is happening.

I was absent because of a few reasons:
1) I'm still kind of in a "funk" that can't be shaken
2) I found that I was getting (searching for the right word to use)....I guess you could say envious of other children who were doing things that I so badly wish Daniel could do. (and will some day)
3) I was trying to get my life back, I seem to have lost it somewhere along the line and still haven't found "myself" yet but I'm getting there, I can feel it.

So to begin with the last couple weeks:

Therapy: We get approval for therapy from CSHCS every 3 months. This set of months (March, April, May) we were denied for Occupational Therapy. PARDON ME?!?! Well thank gosh we have a wonderful therapist (Ms. Linda) who fought and wrote new goals and called daily until it got approved again!! YEA! so we have occupational therapy for 3 more months but then they said it was our final approval and that we could not continue after May. Well, all I have to say is "that fat lady hasn't sang yet!, don't count your eggs before they are hatched, because I will be fighting that decision and trying to convince them that Daniel does indeed need OT.

Physical Therapy: Another therapist that is outstanding (Ms. Carol), she fights each time and gets us 3 visits per week. Our goal is to get Daniel driving his wheelchair without running everyone over. I laughed the other day when I was reading the Terrible Palsy blog and saw that Moo's mother has the same issues!! Check out the March 4th post
and I also read that at Dura Mater, that "Q" is doing great at getting the red button to get himself moving! I love it, that is so wonderful for you guys! See we were missing in action but I kept up on how all you guys were doing!

On another hand we are starting next week a new form of therapy on Daniel that we will be trained by Ms. Carol on how to do and we will be doing it during the night when Daniel is sleeping. It is called TES (Threshold Electric Stimulation)
it took us a very long time to find that some of the equipment that is needed for the TES treatment, we already posses because we do TENS therapy at home and during therapy also. They are two different types of therapy. With the TES therapy it is going to take a long time and a lot of dedication, Daniel will have to wear this 6 or of the 7 nights a week, and it will take months too see improvement, but after hearing his therapist say she has seen it work and I watched the video on the website Tiniest Steps Video, I knew that no matter what we were going to do this therapy. Now granted it might not work but it certainly can't hurt right? So we are very excited about that.

On the other hand (tee hee hee, we're running out of hands!) Daniel is also starting in 2 weeks Aquatic Therapy!! YIPEE!!! We have been on a waiting list forever and finally got in. Mind you this therapy is not covered by one of our insurances so keep your fingers crossed that it will be covered by the other one. Aquatic therapy is AWESOME for kids with CP. And to top it off Daniel absolutely LOVES water in any form.....bathtub, pool, sink, running his hands through it, splashing (I'll have to dig for a photo of him in the sprinkler this past was a hoot!) Anyhow, we are very excited for that to start also!

HOUSE: The house (floor is finally done! wahoo! and it is awesome) now it is just Lonnie and I who have to finish up painting the ceiling, walls and molding. When we were having the floors done (the same friend that did the work on our floors did the ramp and the walls and ceiling) to make the house more presentable instead of a ramp just dumped in the middle of the house, he made it look like it was there from the beginning of time and it was just part of the house and not making it look like it was just plopped there for a handicapped person. We absolutely love it. If anyone ever needs work done and you need someone who does a wonderful job and understands that money for people with special needs is not something to be spent haphazardly, let me know and we can get you his number! Awesome job Mike, Awesome!

We also think that our house is haunted (or my children and maybe my husband) does! I'll post on that one later.

Look in the next few days for a post as Daniel is watching caterpillars that will grow and make a cocoon and hatch into a beautiful butterfly. We have an exhibit that is set up in the local mall here (Daniel might be on the news tonight! I'll let you know). Ther butterfly exhibit benefits the Beaumont Therapy that he goes to, so we went today where they released hundreds of butterflies...each of the special needs kids got a kit for watching the butterflies so we will post and you can all watch and see if we can successfully get a couple butterflies to take back and release in teh butterfly house.

Hope all is well and take care~


C said...

Lookit! I'm first to comment! (This is juvenile, but let me have my moment, m'kay? Thanks.)

Woohoo for Daniel in all the stuff that's progress! I'm there with ya for the agonies of the hoop-jumping. Sometimes I feel like asking whomever I'm on the phone with, "Hey! Ya wanna light the thing on fire before I start jumping? Since, you know, I have nothing else to do."

And re: the funk? Honey, give yourself some time. I think you're missing your mom. You weren't done needing her, you know. Having to go on holding it all together for everyone while you're not feeling so all together yourself is really. stinking. hard.

Can you do something fun all by yourself? Maybe a creative project that can help things realign a bit?

As time passes and everything eases up a bit (and it will), know that you're always in my thoughts and prayers.

PS -- Q also is a total water junkie! We were just remarking how funny it is that he and Daniel have much in common. You know that Daniel is our role model here -- Q's taking notes to see what he should be tackling next.

Anonymous said...

yea your back! i needed some new reading material. hey you'll feel lots better when its spring - you just got the winter blues.
when its beautiful out again you will be able to play outside :)

Jacolyn said...

I'm glad you're back. It all just gets to be so overwhelming sometimes doesn't it. I've got the same funk and really trying to shake it.

Anonymous said...

I had to smile a little bit because I've not come here to read for awhile because I'VE been in a funk! In fact I completely broke down one day this past week - at work. It really scared the ladies. They only see me as a strong mom who is very sure of any decision I make. We've got a bunch of clinic and doctor visits coming up in April that simply overwhelmed me. And my son was really, really sick in February and no one has yet figured out what was wrong. He still experiences much discomfort most days and this weighs heavily on my heart. I don't know where to turn and my son can't communicate his hurt to me. It all just closed in on me this last week. But, it got me talking and various people helped me put things back in perspective again. Do you ever feel like you are smarter than the doctors? Well, I do more often than I like to admit. That's sad because I feel like I know more answers than the doctor. And when I NEED the doctor to actually do his job and diagnos something - he doesn't. "Well your son can't talk and I don't know where his discomfort or pain is coming from." "Now might be the right time for him to go on a feeding tube." This last opinion was stated because my son was in so much pain he wouldn't even open his mouth for food or drink. So I felt that the doctor didn't even CARE that my son was in pain. The only answer for him was to get my son on a feeding tube. He didn't want to believe me that my son would eat if his pain would go away!!!! Anyway, this was the start of it all way back in February and it culminated to my breakdown this last week. But I think I needed that time to cry in order to come back up. I'm not all the way up yet but I'm getting there. ...Amy