Logen Man Update

Logen is doing pretty good. He's not limping very much anymore. He will beable to swim (and resume pool therapy- his favorite form of therapy!) by the end of this week. He pulled his bandage off last week and his surgical site was still a little bloody and swollen so I just put a bandaide back on it. (There's a facebook picture on my mobile uploads).

We have seen an increase in seizures in the last month.

It's re-eval time again (OT). Speech was in May. PT is soon as well. On our IEP no progress was made during the school year. He has lost skills in OT as well as Speech in our private therapy evals. Just asking for prayers here. We are also strongly considering a change in schools. This was discussed in the last IEP meeting due to several injuries (quite a few unexplained ones) Logen came home with. All of this is another post in itself.

We won't have results from the skin or muscle biops for about 3 months. They will send the CSF results and the RMR results at the same time.

Dr. Shoffner sent me the clinic notes from the appointment and I will post the "important" ones soon.

I'm playing catch up on homework now (well, avoiding it actually).

Thank you all for the continued prayers.

Hearing Test Results

The Audiologist will be sending me 'formal' results- but here's what we know now-

His hearing is good at least in his 'good ear'. (Whatever the crap that means!) He wasn't the most compliant child (imagine that!) in sitting still- so she wasn't able to get 'perfect' pictures of both ears. He was still on antibiotics for an ear infection, which can affect the results.

She said that his Ped needs to keep a close eye on him and we need to push our insurance to cover speech (since he qualifies). Isn't this the story of my life. They are still denying Logen. A 5 y/o NON-VERBAL child that ASPIRATES does NOT qualify for Speech Therapy according to Cigna. Go figure. Thank goodness for Medicaid! Parker has no hope since he doesn't qualify. Don't get me started on the government aspect of helping middle class families! We are to poor to provide medical things for our family, yet according to them- we make to much for help. Makes me love the people that sit on their butts and do nothing all day even more......

For now, I am pretty confident that his speech delay IS NOT hearing related! Yippee.

Sick Of Therapy!

I guess there comes a point in all of this chaos that you just get tired of it. I know little Logen must be worn out from the constant 'go', or maybe not- b/c that's what he knows to be the norm. This made much more sense in my head driving down the road this afternoon. I was thinking, among the hustle and bustle of trying to find Logen 'private-after-school' therapy, sometimes we all just need a break. Lets all just take off and go somewhere for a month. And, not have regression, or whatever you call the time periods where no therapy is performed and your child just kinda plateau's and doesn't necessarily go backwards, he just may not make leaps and bounds forward during that time frame.
I know somebody else out there is feeling the same. I can't be the only one of there ;) I should take some time off... so I wouldn't have that list of appt's we need to make or offices I need to call to get something sent here or there, or maybe that script I requested Friday still hasn't been picked up from the ped b/c I haven't been available to do so during 'normal business hours'. Don't get me wrong, I LOVE LOVE LOVE Logen and I wouldn't trade him for anything!!!! He's a busy little guy, and I honestly think if we stopped therapy, he'd go crazy. B/c, thats what he knows. And, really- I think I would to. Being 'not busy' like we are now would probably make me go stir crazy, and then my house might be spotless and I wouldn't have to have an excuse when you come to my door and I politely say, "Excuse our mess. We kinda live here" :) ... or maybe I shouldn't, but the idea was nice for a moment.

Quicky Update

Logen had a GREAT first day!!! He ate well, participated in all activities w/o raising poo, and didn't cry! I have pictures to share, but am tied up in homework- so hopefully I'll get them posted tomorrow. He was EXHAUSTED. He crashed hard he on the ride home.
Me on the other hand had an incredibly HORRID day. Things just don't seem look up. L's therapy threw another one at me, schedule change. That, of course they didn't ask me about beforehand. And, our previous schedule (last weeks) we could have actually worked with, atleast on 1 of the days.
Say a prayer for us all tomorrow as we go about our day.
Bless you all.

Just Pray, Please

We've had some things come up in the last 2 weeks. I'm not really sure where I'd even begin. I know I'm giving a very brief over-view.

And, ya know- there's school (in which I have NO choice but to make all A's). I have a quiz everyday this week... and probably from here on out. I don't disagree with them, it just forces you to do your homework and study. So, all-in-all not a bad idea.

The top of the list is Logen's therapy. We are battleing with 'what we need to do' here. There are some things that have 'evolved' that I don't like and that are certainly NOT benefiting Logen in any way, shape, or form. This is REALLY worrying me. Parker is suppose to start Speech Thursday, but I'm not sure we'll be starting it 'there'. In these kind of situations, I'm suppose to do what's right for my children. And, at this point- how do I know what's right? I know Logen (& Parker once he's a therapy kiddo) has to benefit, he has to be taking something away from it. And, I don't think he is. We noticed this weekend he's walking with toes pointed in. And, I can tell you exactly why. (I can, but I can't- KWIM?)

All of you 'praying people' out there. Can you please, please, please pray for us and our recent 'issues/discoveries'.

The Government BITES!

Those of you who deal with medicaid can totally relate. For the last several years, we have fought to keep medicaid for Logen. In Arkansas he qualifies for TEFRA. To qualify, you must 'qualify' for 2 or more therapies. This form of medicaid is secondary to provate insurance and isn't income based. Depending on Adam's income for any given month, the form of medicaid we get goes back and forth between SSI and TEFRA. Here's what bursts my bubble. We FINALLY qualify for checks for Logen. And, yesterday- I open the mail and read a lovely letter. Apparently the government has OVERPAID us 3,000 bucks in the last 3 years. And, we have 20 days in which to give it back. Nevermind the fact that it can take them 3 years to give us money that we need for obvious reasons, but them they expect us to pull 3 grand from where in 20 days? The way the system works makes no sense. They are the federal government... why send out money if you know you are going to ask for it back?! They see what the crap we are paid each month. We pay taxes! I sent in paystubs. How did they miss this? Is Logen going to get kicked out of the medicaid system b/c of their screw up?
My kid has CP, nobody asked for this! We just asked for a bit of help to give him a good life. W/o medicaid, Logen can't get therapy- our private insurance only covers 60 sessions per year! We used that in January. What about his thickener. Insurance doesnt cover that either. It's 2 bucks a package. 1 pkg is good for 4 oz of liquid. Do you know how much that would cost us a month. We would be living on the streets! I'm seriously thinking we should stop trying so hard, stop working, and live off welfare. Why in the world does the gov't want to continuesly help people that can't hold down a job, are in our country illegally, have 15 kids and don't even try to make it?
I'm ticked. I don't have 3 grand to give the government. My family has to eat. My child needs therapy, special services, etc. It's not like we use the money to support our habits. We don't smoke, don't abuse drugs, and we aren't alcoholics. The money goes to help pay Logen's medical expenses- our St Louis Trips (To the Cerebral Palsy Center) medicaid doesn't cover (and is out of network for our private insurance), so we used that money for those! I'm trying to go back to school. I'm already taking out student loans- I hate debt. I refuse to pay them back with a credit card and acrue 20 something % interest. Yes, that was an option on my bill. Whaaaat?
Just wanted to get that off my chest, I don't feel much better. I still want to chunk something out the window and scream!!!!!!!!!!!!!!

Aug Comm Training

WOW! Thats really what I want to scream! Logen's SLP (Jenn) and I completed a 2 day (6 hour) training today for Logen's new aug comm device (PRC's Vantage). It was AMAZING. I really learned alot. I am absolutely amazed at how beneficial the training was and how much the device can actually do. My word of advice is- if your child has or gets a communication device- you MUST attend a training session. You will learn so so so much.

I learned how to upload digital pics to the device, create new pages, change pronunciation, move things around, etc. And, of course- really learned how to speak with the device. I came out of the training knowing how to speak full sentences! And, I can program it! Yay me :) Most of you know, that I was excited to get the device but a little upset (ok, maybe alot upset) that my baby needed it. While I am still sad that he needs it, after attending the training I am much more thrilled about having it. It's going to be a wonderful tool for us all. Best of all, Logen will beable to talk to me!!! (And you!) How great is that?! So, we will begin hitting the device at lightening speed so that we can move up to the next level. There are many levels of the device, it grows along with him. I am telling you, it's too cool!!!

Wish us luck as we embark on yet another journey with Logen! In OT yesterday, he found 'category' then 'toys'. Thats a 2 hit sequence! Go Logen!!!!!!

Jenn~ thank you for hosting the training at your home. And, for taking the time to do the training with me. You are AWESOME! I'm so glad we did it!