Severe Brain Damage - How Did This Happen?

Crazy or Something Like It

I for some reason have decided to go back to school to become a Nurse. I also now have found the true meaning of crazy. Really, if I thought my life was crazy before, I was wrong.

This is all killing me and I am only five weeks into a fourteen month program. I know that in the end it will be best decision I have ever made. Especially considering, I have been thinking about it for a long time. Somehow, there was always a reason to put it off. Finally, I figured out that there was really nothing holding me back except for me. Mark works on the weekends so he can watch the kids during the week.

After being out of school for so long, I really have to revise my study habits. I am doing ok, but if I had some actuall quite time, without being exhausted, maybe I could get some learning in. I have still been trying to watch my friends child with PKS two days a week, but I am afraid that even though the extra money is great, I am gonna have to quit for awhile. Especially with Mid-terms being next week, I am really going to have to buckle down. I also have to write a paper on someone I think is successfull. I want to write about someone with Cerebral Palsey that has really overcome the odds. If anyone out there has any suggestions, please email me.

In the meantime, I have become totally hooked on the HBO show True Blood. Oh my, it is soooo good. Plus, I am totally in love with HBOGO. Because we susbscribe to HBO through our Direct TV, I can watch all of the episodes on HBOGO for free! It is so awesome!!!

So, the kids are in summer school. Trystyn goes four half days for five weeks and Rain goes five half days for five weeks. So far so good. Rain gets to ride the bus so that was a big selling point. I figure it gives him something to do and he gets to learn in the process. To me this is a win win all the way around. We are going to a Karate consultation for Rain on Monday afternoon. He has been asking to take Karate for awhile, we are hoping it will help with discipline. Not discipline in the way that he is a bad child, but more of a focusing on activities discipline. I just really hope that he is not to young and that he likes it.

Trystyn is doing well. There have been no major changes in her life. She is just growing like a weed. She is 38 inches long. I was really thinking that she was tall for her age (turned 4 on May 31st), but according to the charts she is only in the 50th percentile.

Mark has made it through this last round of layoffs, thank god. I really don't know what we would have done if he had lost his job. We will be going to Wisconsin during the 4th of July weekend. It will be good to see that side of the family, it has been awhile. Also, we are going to the Lake at the end of July for a family reunion for my side of the family. I am looking forward to both trips. Always with road trips though comes the hope that nothing happens with the kids when we are so far from home. I really need to figure out a bathing system for Trystyn though. Preferrably, before we go on our trips. I need to find something that will allow me to not have to bend over the bath tub. My back totally needs a break.

So it is not time to go. Rain wants chocolate milk and I need to watch some more Tru Blood. Please don't forget to email me with suggestions or topics that you would like to discuss, I am open to all ideas. Here is one to leave you with: What do you think about medicaid now starting to call diapers a luxury when your child is unable to be potty trained?

c_stolz@yahoo.com is the place to send your comments, suggestions, questions and all the what nots that run through your head.

Wish I would have thought of that.

So my friend Kate sent me a link to a great new website www.shutupabout.com. This site is awesome. Everyone needs to check it out. Really though I am totally bummed that I didn't come up with that name. It totally fits my personality. Oh well, huge props to the makers of this new great find. Well, new to me anyway.

SB40 BOARD

Well it has come to my attention that our local SB40 Board is just sitting on $45 Million dollars.  This is money that we pay in through our taxes to support services for children with special needs.  They currently expend about $20 million per year.  This highly pisses me off because I think we are on every waiting list through out the county.  Always, places that can help us get Trystyn the things that she needs, have the same response, "well you do qualify, however, there is no money at this time, so we will just put you on our wait list".  I have a friend whose family was on a wait list for 3 years to get a ramp built for her home.  It finally got to the point that they just couldn't wait any longer.  They some how found the money to build the ramp they desperately needed themselves.

I would like it if someone would tell me why 2,400 people are currently on waiting lists when our SB40 Board has decided to invest $45 million instead of handing it out to the people that desperately need it.

If anyone has any ideas on how to change this and live in St. Louis, MO County please email me.  I am desperately looking to stir up some pots.

 

Here is a picture of Rain with Trystyn laying on top of him on our bed. They are so cute, if I do say so myself. Rain loves his sister and like to put her on top of him and then he will pretend that she is flying. I think that it is awesome that he is so comfortable with her. I really hope that this attitude will continue. I am still waiting for him to actually realize how different Trystyn is.

I have explained it all to Rain in the most basic terms of course. I do see that as each year goes by and he gets older he does understand it more and more. Although, I am having to remind him on occasion that Trystyn is not a baby. I do understand that for him she is like a baby because she doesn't talk or walk or do all of the things that he sees other kids doing that are younger than her.

I am just hoping that I will be able to guide him through all of this as the years go by without too much strife.

The Blizzard that Never Was - Wait that is my life

 Well here in freezing cold St. Louis, MO we were hunkering down for the blizzard.  I was just hoping that the power wouldn't go off.  So needless to say we still have power and only about 1 inch of ice topped off with 1 inch of snow.  You would have thought by weather reports that we were going to be trapped in our houses for weeks to come.  I mean really you should have seen the stores, it's like a hurrican was coming.  But, alas, not so much.  One friend asked me what happened to her blizzard?  I was like really I have no idea.

Well it's the 2nd month in the new year and so far we are in the process of getting a new wheelchair and a Kaiser Betten Bed for Trystyn.  I am also looking at getting her a chair that just stays at home for her feeding and playing and such.  Also, she needs to get some hand splints for her hands so she doesn't bend her wrists under her to support herself when sitting.

On January 23, Trystyn grabbed my nose when asked to.  She then did this three times.  I have never been so excited.  I mean it may seem like nothing, but it is huge for her.

My life seems to be spiraling in a direction of the yucks.  Someone in my life has deemed it necessary to treat me like a piece of property most of the time and yell at me just as much.  Let's just say I'm sick of it.  Don't know how to work through this part with a person that doesn't really listen to anything I have to say.  Still I sit here wondering just when the personality changed to this degree.  I am not perfect by any means, but I am doing the best that I can with what we have.  Lately, it's just always one negative comment after the other.  So as it stands the fighting continues and yet apparently I am not doing a very good job taking care of my family. 

Recently, I read a different blog on special needs marriages, one woman stated that in order to overcome the reality that we live in most others in her life have suffered.  I feel like I am doing a pretty good job of handling everything, well for the most part.  The Paxil helps me cope a great deal.  Apparently, in all of this life that I call mine, some people are just not happy with the results.  I don't know how to change this without going insane.  I can only cow-tail and bow down to people so much before I just don't care anymore.  It seems that I am at that point now.  I just don't care what comments he makes and how much he yells and all the stupid shit that spews out of his mouth while telling me to fix it all.  Because you know I do nothing.

The kids are doing great.  We have had 2 snow days and I am hoping they go back to school tomorrow.

Okay I am done being negative for now.

 

Politics Suck

Well I have to say that sometimes you wonder what will come next.  I mean how much more can happen before it all just becomes too much?

I was finally feeling like things were actually starting to turn our way for once.  We were able to get our mortgage modified which means that we were not going to loose our house.  This does not mean that our money problems are gone, just that we at least still have a place to live.  If only money actually did grow on trees then maybe could get somewhere.  Living paycheck to paycheck sucks, but at least we are all healthy and just barely making it by.

I actually sent in the paperwork to St. Louis Variety Club and found out that we qualified for their services.  YIPPEE!!.  Since we are officially out of DME (durable medical equipment) for the year through our insurance, this was the only way that we would be able to actually get the new wheelchair that Trystyn needs.  I had previously been scrambling for feeding tube supplies that will last us without having to pay out a whole bunch for them.  Luckily, I am on an equipment exchange group and got what Trystyn needs.  The Kid Walk is what put us out of DME for the rest of the year.  I still have to pay United Seating $850.00 for the balance of the walker.   Was really not expecting this bill.  When United Seating brought the walker the balance was zero.  But low and  behold this is the difference that the insurance would have paid but didn't because we are out of DME.  UGH!

Two weeks ago, I was at Ranken Jordan with Trystyn when we ran into a dad and his son.  The son is in Trystyn Early Learning class.  I noticed that they had the same van as we do and that they have a ramp.  So of course I immediately asked about the ramp and how they obtained it.  I have always been told that you can't modify a van that is older then 3 years.  We have a 2005 Dodge Grand Caravan so obviously mofifying it was out of the question.  Then low and behold I find out that their van is a 2001 Dodge Grand Caravan and they already had the van and that St. Louis Variety Club paid for the ramp.  So I was on the phone as fast as I could.  Come to find out this 3 year limit only applies to lifts, not manual ramps.  Well, I then called STL Variety Club and quickly found out what I needed to do to get a ramp in our van.  See, I had previously asked them to buy us a Special Needs Car Seat, obviously the ramp is a much better choice.  I then had to call United Access and get a quote.  All I had to provide to STL Variety Club is a copy of our Title.  The new ramp will be installed this Wednesday.  I can't even tell you how excited I am.  I promptly told all of my friends with special needs kids about this option.  We were all under the same impression.  Apparently, the professionals that are supposed to be giving you resources and have all the information that our families would need do not know jack crap.  Like everything else in life, you just have to do it yourself.

My dad has had a lot of health issues since 2005.  It started with what started out as gout in his ankle, but apparently was actually a staff infection from the sore on his foot.  You see, dad has severe, severe neuropathy in his legs and feet.  He does not have diabetes.  It seemed like just as we thought it was all getting better something else would pop up.  The staff infection left dad with only 5 toes left.  Some time ago, dad came down with pnemonia.  This was a severe set back.  Since then it has been a struggle for him to get around on his own, but he was doing it with the help of a walker.  Dad litterally went from walking with his walker one day to not having any strength at all to even lift himself up.  We have since found out that there was a build up of fluid in his brain.  Tomorrow he goes in for surgery to have a shunt placed in his brain that will drain the excess fluid for him.  We are hoping that this will allow him to get his motor skills back.  Needless to say that tomorrow should be a long day.

During everything going on it came to my attention that DESE is looking to get a waiver from the State of Missouri so that they do not have to reimburse the public schools for their Early Learning Programs.  This would be detrimental to Trystyn and all the kiddos out there that are between the ages of 3 - 5.  Early Learning is how we and everyone else in Missouri with a disabled child are able to provide the therapies that their child needs to continue on a path of learning things that "typical" kids learn how to do on their own.  To say that I was pissed off is mild.  My friend Sarah and I went to a meeting to find out what was going on. 

Legislation has to be changed for this to go into effect.  But those sneeky bastards could put it through on some other piece of legislation without anyone being the wiser.  Just for once I wish that I could stand up to the idiot that thought this was a good idea and say, why didn't you even find out the facts about how many children in our state that this would be a detriment to before you decided this was a good idea.  Literaly, the woman didn't know anything about what she was proposing to cut before she said "hey let's find out if we can cut this".  I am not an idiot, I know that the economy sucks, I know that Missouri is in a huge deficit and money has to be cut somewhere, but why is it always the children in our state that end up suffering the most.  You see, general revenue is what funds Schools, Prisons and one other thing that I can't remember.  Why isn't anyone talking about cutting funding for the prisons??  Oh wait that would be inhumane.  I say BULLSHIT!  Most of the prisoners, I say most because I do not feel that our justice system is perfect and lots of innocent men and women get sent to jail, deserve to be there.  Let's cut some of there luxeries so that our innocent children can get what they need at school.

Realy I could go on for hours about how I feel about some of the crap that our government does.  I am though applauding Obama for the healthcare changes.  Because of this as of January of next year we will have unlimited DME!!!  When I found out that my husband's insurance was changing I was freaking out.  Because with a kiddo like Trystyn this could be a serious issue.  But, I made a phone call and found out that we will now have unlimited DME and that they will pay for formula as long as a doctor deems it medically necessary.  Our insurance is going up $30.00 a week.  I think this is reasonable for all that we will be getting, but on the other hand Mark hasn't had a raise in 4 years.

Okay, well as you can see life has been going along as usual in its crazy fashion.  I just keep plugging along hoping that one day things will finally just be okay. 

It seems to me that as you just get past one hurdle the next one comes along. Trystyn started school on Tuesday. This is a great thing for her, I am still getting used to the idea. I know that this is the best thing for her, she tells me with her squeals as she gets on the bus. Probably, this is good for me as well. Rain started 1st grade on Monday. My oh my where has the time gone.

I have been just trying to get through my days. My father has not been doing well, so now we are in the process of just trying to figure out what is causing all of the severe neuropathy that he has. This has been tough on my mother most of all, but really on the family as a whole.

Mark has been trying to work as much as they will let him so that some how some way we can get more money coming in. Hopefully, the loan modification will go through on our house and if so this will be a tremendous help to us. It is a struggle to just make all of our bills, let alone a huge house payment.

Thankfully, the Insurance Company has deemed it medically necessary for Trystyn to have the walker that we would like to get for her. This has taken months and months to accomplish. Luckily, the insurance company is footing the bill for this $6,800.00 piece of equipment. We are also in the process of trying to get a new wheelchair for her. We gratefully got the next size for free from another family and with the help of Mark's parents. We have found that with how rigid it is we feel that it will fall apart just as fast as her Kid Kart did. Her OT found a chair called the Kid Rock that actually the whole seat moves with Trystyn as she moves. We have a loaner one right now and I am personally loving it.

I have been dutifully working on perfecting my new found love of making crocheted blankets. Hopefully, others will love them as well. I hope to someday start making quilted blankets as this is something I have wanted to learn how to make for awhile. But for now, I shall stick with this.

I have also been dutifully ignoring my blog. Not that this is something I have been trying to do, it just seems to get lost in the shuffle of my everyday life. I am telling and telling myself to be better about this, but for some reason it's just not working. Hopefully, soon my body will respond to my brain.

My friend Sara just started her own blog on Wordpress call "The Crazy Life of a Mom of a Special Needs Kid". She has just started so please check her out and hopefully you will decide to follow her blog.

So.... All in all today was a good day. I had a parent meeting this morning at the Delta Gamma Center. If you remember this is where Trystyn was getting her vision therapy. Then I did the mad dash thru Target to pick up white shirts for the big family photo this weekend. Then I got home just in time to realize that Mark was home from work and I could have strolled through Target, as I like to do when I am alone. I was in the mad rush to make it home before 12:00pm which is when the bus drops off Trystyn. Anyway, Mark stated as I walked in the door that he would have called me had his phone not stopped working. UGH. My husband is no where near technologically inclined, which means I am the fixer of all things in this area.

I did however, find out that Mark is thankfully not working tomorrow. Which means I can go to my sisters house and try and finish the job I started for her. Then later that night is Book Club with friends. This is one I am really looking forward to and can't wait to finally say I am on way to that.

For now though it is off to the grocery store to get the Grape Juice that I promised Rain I would get for him today and promptly forgot.

New Thoughts

It has become glaringly obvious to me that I have become seriously lacking in keeping up with my blog.  I have found that because I was mainly talking about Trystyn and what she is going through that I have neglected to get to the part about the rest of my family and how I am dealing with all of this.  I must admit that I have been struggling with how much information to share about us with the rest of the internet world.  Today, while talking with my friend, she helped me come to the conclusion that there is so much more that I have to say.  So with this thought in mind I will go forward.

 

My husband just recently returned from Switzerland where he was working for two months.  Let's just say that while this was an awesome opportunity for him, it was not such for me.  Being alone with a 5 year old and a fully disabled 2 year old for two months was an extremely long excersize in the art of patience.  I have come to realize that while I never really had much of this rare commodity, sadly as I have gotten older what little I did posses is dwindling away at an alarmingly fast rate.  I blindly thought when I was younger, before kids, that I would magically aquire all the patience I would need when I had said kids.  While I have known this to be true for others, sadly this is not so in my case. 

 

After everything had happened with Trystyn and I finally returned back to work, I found myself fully unable to focus on anything of significance.  This was effecting me in all aspects of my life.  I found myself only to think of the future and what that would mean for Trystyn.  Plus, I was mourning what should have been my relationship with her and all of the things that I would miss out on experiencing.  So with this in mind I saw my primary care physician and he prescribed Paxil.  This is an anti-depressant.  I am sure you are wondering why I am talking about this, but let's just say that I have found this medication to be my savior.  I was finally able to focus on the here and now, and somehow it gave me the patience I needed to have with my 5 year old on days that I was sadly lacking.  I am not saying that everyone in my position should run out and get on medication.  I also am aware of all the naysayers out there when it comes to depression, I live with one.  But, for me it was the best decision.

 

Now, as of a year and a half ago, I have quit my job to stay home with the kids.  In reality this should read, I knew that Trystyn would end up with a feeding tube and a "normal" daycare, that I could afford, would never take her in.  Sooo, stay at home mom here I come, somebody should have warned me about how difficult this would be.  It only took like 2 months to get used to it.  Dealing with your children 24 hours a day 7 days a week is sheer joy, and a little bit what I would imagine living in hell would be like.  Granted, I never wanted to be a stay at home mom, but now that I am, I can't imagine my life differently.

 

I should go for now as I fear this is getting long winded.  Just a warning that going forward will be reflection of my random life.  Hope you like it.

Sorry about the wait.

Well Trystyn is doing well with feeding through the g-tube. I just wish we could get down to a shorter amount of time. Since I last posted she has started on Baclofen which is a drug that helps to loosen up her too tight muscles. This has been working great for her. She is now able to shake a rattle on her own, well for a little bit, and she has been able to sit on her own for a minute. This may not seem like much but we will take whatever she has to offer for us.

She has also been prescribred Clonipine (sp?) for sleeping and this too has allowed her to sleep all night long and in her own bed which is awesome for us. She just had a second Strabismus surgery on both her eyes and that went really well. Her eyes are no longer wondering. Trystyn also had a daytime EEG on Friday to see if she is having seizures again. As of lately I had been noticing some abscence seizures and we are supposed to get the results on Tuesday.

Mark just got back from working in Savannah for three weeks and it is nice to have him home again. Although he has an opportunity through his work to go to switzerland for 45 days which is great and he is definitly taking advantage of that. He was supposed to leave on the 8th of March but now we don't know when he will be leaving. I like that he will get to be at home for longer then originally planned inbetween trips.

Rain is doing well in school, well maybe I should wait to say that untill after parent teacher conferences next week. He did save up his money though and bought a DS. I was proud of him for being able to hang onto his money for that long.

We recently had gotten a new bath seat through First Steps, which by the look of it on the site it was going to be great. Trystyn would finally be able to play in the water. As with everything it turned out to be a death trap. Of course I tried to use the first time when it was just me and the kids at home and let me tell you it was a god awful experience. The funny thing is that Rain knew she had gotten a new bath seat and when he came in the bathroom to see her in it trystyn and I were both in the tub and the bath seat was not. Rain said "now what is going on in here". That was hilarious. We contacted Ruth our service coordinator throught First Steps so that she could send it back to the company they ordered it from. It turned out that when she went online their website no longer existed and ther phone number was not in working order. Turns out it was just some kind of a scam. Weird though because they sent the product. Luckily First Steps had paid with a credit card and they were able to get their money back through the credit card company. We have since ordered a new bath seat and we are just waiting for that to arrive. We are also in the process of getting approval through First Steps to get a walker for Trystyn. I really feel that as long as she has the correct upper body support, her legs are strong enough to be able to allow her to walk this way. I am really hoping that they approve this and we are able to get it before we get out of First Steps which is coming up quickly.

Trystyn has her testing for preschool on March 26th. This will show us what services she will qualify for. We are supposed to get the results on April 9th. Ugh that will be a sad day.

As for me, I am still just taking my life day by day. My dad has not been doing well and he is now in a nursing home building back up his strength after having pnemonia. This has been a really long process and hopefully he will be able to come home soon. Marks Grandma passed away on Thursday night and while it was her time to go she will be missed greatly by everyone that knew and loved her.

I will try my best to post more often in the future. I know that I have been a bad girl.

Carrie

Well Here We Are

It has been sometime since Trystyn's surgery and I would have to say that I am so glad that I did it.  Her acid reflux has disappeared and she is finally getting the nutrition that she needs through her feeding tube.  It has taken us some time to get her back up to 6 ounce feedings and these are still going in over a two hour time period.  But we will continue working on getting that down to a shorter time frame.  But all in all it is going well.

Otherwise life is just going along.  Definitely sometimes feel like my life is going "to hell in a hand basket".  It just seems like when things get going okay then something else falls apart.  Anyway, don't really want to get into it because I know my family reads this blog.  Sooooo  UGH.

Health wise everyone is doing great.  Trystyn has her transition meeting on November 9th, in just two short weeks.  This is where we will discuss her transition from First Steps into the School System.  We shall see how this progresses. 

Nothing really new to report - well there is but I will have to wait and talk to the shrink about that.