G'day mate!

Today shaped up to be pretty spanktacular! I think it had something to do with me complaining about Hennepin County the other day...what's it called... a COINCIDENCE! Or, as I like to call these little occurrences "coinky-dinks"!

I live for coinky-dinks. Like how the name Penelope means weaver.

On my way to Archaeology class, rocking out to "Swallowed" by Bush and feeling in between, I got a call from the county. I held my breath! Not for long though, since I  was driving. I can't be losing consciousness while driving, that's crazy, especially at the expense of HC. That is ludicrous.

Surprisingly, HC had good news for me. When I saw their number I was ready to throw down, but the  news was delivered by someone I had never talked to before; she is new to our team and she sounded very young and sweet. She giggled and said "um" a lot, that worried me. I have a hard time dealing with people who can't act professionally in this type of circumstance. I don't talk candidly when it comes to matters regarding PP. I'm past the "duh duh, how cute am I" stage. Nevertheless, I was able to carry a coherent conversation with her.
She said she was having troubles with our case because she didn't understand it completely. How encouraging! At the very least, she assured me that she was being helped along. This is just a tiny example of the bureaucratic bullshit I deal with on a regular basis with HC. They expect me to have all my ducks in order, within an unreasonable time frame, as they continuously send out unnecessary and time consuming paperwork, then put people on my team that don't know what they are doing in the middle of this complicated process. I guess it's good that she was covering all the bases, crossing her i's and dotting her t's, it's stupid little things like this that have bitten me in the ass before.

 JEEZ! FLUFF OFF HC!

I explained what was going on with my part in the process since she was calling for clarification about services PP had been denied in the past. She said that the HC team was done reviewing PP's case so it was on it's way up to the State level  to be reviewed by the SMRT team.
YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAY!!!!!!!!!!!!!!!!!!
I had no further clarification on the actual status of our case, which sucked. At least it was making it's way up the ladder more quickly than I had been told by my Public Health Nurse. It felt good to know that I did everything right because the HC worker didn't say that I needed to send over any additional paper work. The time frame I was looking at as of Friday the 13th was two weeks out just for the review process, so the fact that the first leg of the journey was completed almost a week early is very encouraging! I just hope that the remainder will keep this momentum and soon we will have everything PP needs and maybe I'll have a chance at less paper work hanging over my head.

I can count on three things in life: death, taxes, and paperwork. Alas, there will always be paper work, but less is easier.

I am super excited to call Stephanie, the Public Health Nurse, tomorrow with the news. She will double check the system because she has personal access to all HC files regarding PP's case, just to make sure we aren't missing anything. And I know that she will appreciate the progress, maybe even celebrate briefly with me until PP throws grenades at me to get off the phone.
That's enough about that.


PP is in full therapy mode. She has therapy 3 to 4 times a week, plus school at an elementary for two hours every week.

We had Occupational Therapy at the hospital today. It was fun. We were introduced to 'brushing'. It's a process to de-sensitize children with sensory issues. As with many things, I could talk for a very long time about PP's sensory issues and why brushing is a good thing for her. However, I will attempt to put it in a nutshell: to make everyday sensory activities like dressing or changing diapers easier, using this soft plastic brush on PP's legs, arms, and back will help her cope with the negative feedback she is getting from her nervous system when she does activities of daily living. When PP needs her diaper changed, needs to change clothes, put shoes on, almost every transitional activity that "normal" people can glide through without noticing, her nervous system sends really exaggerated signals to her brain saying that these events are really unpleasant. Since she can't speak, when she gets this negative feedback her reaction is giggling in a nervous way, kicking, arching her back, screaming, hitting, crying, even biting. She will try pretty much anything you could imagine trying to do yourself, if you were to try to stop someone from rubbing rough grain sandpaper on your skin. The brush used in brushing is like a very fine grain sandpaper that is used multiple times a day in hopes to make the sensation more tolerable. There are so many dynamics that go into this process, including vestibular and proprioceptive feedback that involve the concept of PP's body self-awareness within space. Incorporation of brushing is just one little drop in the ocean of PP.

Oh man! It's past my bedtime


soft pillows and fairy dust,
XoX

Enough already! Ugh!

Sometimes, I have a bad day.

More than what I like to let on.

Today is one of those freaking frakkin days.

Blame the rain and non-tornadoes for making me stay inside and worry about nonsense.

I have been having an extra stressful day since the end of February. I got on the ball to get everything in line for the PCA services to start up, but then Hennepin County needed to review PP's case suddenly and she was taken off insurance through HC because our income+her age= a new income bracket for Chris and I to fit into, and we are just over the limit. 

Seriously, like $500 a month over the limit, which is like a little bit of pee pee in a big bucket. Someone give me a break dammit! Screw you HC and everyone who abuses the system. You make it harder for people who actually need services to get them. For the past month and a half I have had enough pending paper work and phone calls to fill a full-time job. I have piles of paper everywhere. 

PP can still receive services like ER visits, prescriptions, and therapy, but her PCA stuff is suspended until we get this sorted out. I really need these PCA services! I have had to put my plans for PhunPhase3 on hold until I got the PCA, but I didn't anticipate it would take this long! Ugh!

So now what happens? Well, I fill out shit tons of paper work. I mean, like, TONS of paper work. If there is one thing I hate, it is doing paper work for HC and beyond. I have to prove that PP is disabled to a few different teams on the county and state level so she can qualify for a certain kind of insurance program. Then I have to wait. And wait. And wait. And call. I make so many phone calls and sit on hold forever and ever. She would have primary insurance through Chris' work, but then she would be on a supplemental state program to pick up the bill for all of her services and doctors appointments. It's much more complicated than that, I could spend a day talking about it there's so much to it but I am lazy right now. It's called TEFRA, google it. 

Since I have to dig out all of PP's past medical records (including doctors visits, ER visits, therapy evaluations, school evaluations, and anything else that can prove she is disabled) I am completely reminded of the hard, cold truth about my girl. She is disabled, and I kind of forget about it sometimes. She is just PP, that's how I see her, but doctors and therapists see her differently than I do. The Developmental Pediatrician sent his report last month, as does everyone who works with PP, but there was something I read that I think about a lot. It's hard for me to gauge where PP is developmentally; she is kind of all over the board. The Developmental Pediatrician put it in black and white: in terms of developmental milestones, my 2 1/2 year old girl is operating at a 11-14 month old level. Just reading that makes my heart beat in a weird way. I can't explain it, but I would never wish that feeling upon anyone.

Ugh. Enough already! I don't really know what to say about that. 

I guess I would just say that I am incredibly thankful for everyone who works with PP, because they care a lot for her and our family. It means more to me than I can even express. The people who work with her have become like a weird sub-family who speak in medical jargon and remember how PP was when she was little in a way that my biological family wouldn't understand. I don't know where she would be without them!

Her doctors and therapists take pictures and videos of her regularly and give them to me, it's almost like they are surrogate grandpas and grandmas. I keep these things to myself though, they are special to me in a way that I don't want to share with anyone besides Papa Chris.  I can't explain that feeling either I suppose. 

Another "bah-humbug" moment came when I got a phone call the other day. It was a number from the hospital (I pretty much have every number memorized)  but it was one that I didn't recognize completely. I didn't recognize it because it was from the newest addition to the family: Urology. It was the receptionist calling to make an appointment, and it kind of caught me off guard. Dr. Meysenburg, PP's new primary doctor, said it was finally time to see a Urologist for PP's vesicoureteral reflux in her kidneys. This is a big deal to me because this brings the possibility of PP needing surgery for her nasty reflux to the top of my list of things to worry about. They will do bunches of tests and probably catheterize PP to get the stuff they need. Great. Ugh. Enough already!

Whatevs, I'll deal with it like a darn-tootin rockstar. 

Sometimes I think it's ok to feel bad, mad, sad. It reminds me that I am a human being and not just a super-mommy robot-zombie. I will feel better tomorrow because I get to go to Archaeology class and that is always fun for me. I get to talk about rocks, history, and the subject of 'How preposterous are ALIENS?' comes up every time without fail. My wily teacher swears about stickin' it to the man. It's really great. I love talking about aliens and rocks and history and stickin' it to the man. The class demographic is all over the place, there's only about 10 students on a good day, so the conversation is always entertaining! 

Anyways, back to the crabbiness. I hate HC and I hate paperwork. That's the point I really wanted to stress right now. I get sad about my PP being disabled but I love her more and more every day, so I think it equals out somewhere in the universe. 

My case worker/Public Health Nurse is amazing BTW, she kept tabs on me during her vacation and even did a little work for me. What a gal! She is keeping the fire lit under the HC teams reviewing PP's case, so now I play the waiting/calling game until I hear something I like. She's like a mentor. She always says "Well Lacey, it's good that you're doing all of this now. You are doing a good job, and I know it's a lot of hard work. You will be the best Public Health Nurse! This is how I learned how to do my job before I went to school, be thankful for it because it will pay off." She understands me, and everything that I am going through. Thank goodness for people like Stephanie! Mad props to you, home girl. 

Come to think of it, every teacher of PP's is always encouraging and willing to lend an ear about whatever I need to talk about. Teachers and Nurses are the best breed of professionals! They will go above and beyond to help others!

It seems like I have generated enough positive energy to detract grumpy momma Lace. Kudos, momma Lace. I am not so crabby anymore! 

I still am not fond of HC tho. Make a note of it.

Time to geek out and watch Game of Thrones with Papa Chris.

Tata!

XoX