Dear UHC,

Every time something of note used to happen I would instantly think, "I need to blog about that!"  Now, a month goes by between posts and I sit down to write and realize so much goes on in a month that I can't possibly remember what to blog about.

First and foremost is that I am so not happy with our insurance company right now.  I do have to say that up until this point they have been pretty fantastic but this last month has totally changed my tune about them.  I have always gotten all of our family's prescriptions filled a local little mom and pop pharmacy.  It is a lot of prescriptions.  Monthly Kenneth gets 4 prescriptions, I get 2, Carly gets 2, and Anna gets at least 4.  The pharmacy we use is the kind where I call in refills 5 minutes before I get there and they are ready when I arrive.  They are also the kind where if I need a prescription on Monday but am broke and don't get paid until Friday they will let me have it anyway and let me pay for it on Friday.  They are the kind of place that knows us and knows our struggles and works with us.  So I got a letter in the mail last week telling me that if we continue to get our prescriptions of our "maintenance" meds filled there and not at either CVS or Caremark (mail order) that we will be charged double the retail value of the meds next time we pick them up.  Excuse me?  Let me tell you about my last experience with CVS- I went to pick up some Diastat for Anna (rectal valium for cluster seizures) and I got the med and went on my way.  Luckily I opened it when I got home and noticed the pharmacist had not even set the dose.  You have to set it and lock it in place for the thing to work.  Luckily I knew how to do it and I am glad I checked and didn't leave that for someone to find who needed it for Anna and didn't know how to lock the dose.  So ladies and gentlemen, that is how closely CVS is checking the dosages on your prescriptions-  so closely that valium could have been as much as 10 mg off.  Oh and just to be clear- there was also a big red tag sticking out of the valium box that said something to the effect of "STOP (with a big red stop sign)!  Pharmacist must dial the dose before dispensing.  Pharmacist to remove this paper after locking dose."  Lucky for Kenneth, he has his own insurance through his job and can stay with the local place.  The kids and I can't though and I am not at all happy about it!  So I was already pissed about the pharmacy fiasco and then I got a another letter that was a denial of coverage for Anna's tube feeding formula.  So let me get this right- the same company that paid to put the gbutton in, and pays for the pump and related supplies, does not see the tube feeding as medically necessary to pay for because Anna does not receive 100% of her nutrition through the tube.  This is nothing less then insane.  I will be on the horn with them first thing in the morning.  This is a battle I am geared up to fight and I will win!  You want to know what chaps my hide even more?  They will pay for whatever people need when it comes to obesity because apparently that can make people sick.  Newsflash United Healthcare, being grossly underweight isn't exactly healthy either.  A nurse I work with was able to get her Medifast food covered because she is "pre-diabetic" and needed to loose about 15 pounds.  I am happy for her that she was able to get what she needed.  But we can't get tube feeding?  How exactly do they justify that?  

And now for the rest of the details which will be delivered bullet style because I am tired (or lazy?):

• I am enrolled in school...AGAIN.  I will be getting a bachelor's in nursing.  I already have an associates degree in nursing.  The education will change nothing about my job.  Currently the hospital will pay for my schooling and I decided I better take advantage of that.  I'm sure the program won't be around forever and I will be kicking myself later if i have to pay for something that could have been free.
• Carly attended another sibshop through Cook Children's at a place called Rocky Top Ranch.  Let me just say this is an amazing place with amazing people.  My hats off to all of the volunteers who made Camp Courage happen.  
• Gabe is part monkey.  He is 19 months old and climbing EVERYTHING!  I found him climbing the stove tonight while my back was turned- I was in the kitchen.  He is that quick.  I'm a pro at child proofing a house but monkey proofing will prove to be a whole other realm.  The third child...oye!
• We dumped the Dish and got a Roku box.  That's a smooth $75 extra in my pocket every month.  Nice!  The only downfall is the availability of that damn purple dinosaur named Barney 24/7.
• I don't care if people want to use coupons and price match.  I'm glad they can do that.  But really- shouldn't those people have their own line at the check out?  I always get behind the couponing price matching queen.  Shouldn't there be some perks for paying full price?

Well, the dryer is done, the kids are asleep, the husband is not currently snoring, and I am tired SO all of that together equals time for me to hit the hay.  Night!

How Things Change

Anna's weight never picked up like we had hoped so at the advice of the GI we had Anna's feeding tube put back in last Friday.  She did well with the procedure and we came home the next day.  She was very sore and still is just a bit, but otherwise all went well.  She is tolerating her feedings better than I ever could have imagined after the way things were last time.  She calls it her belly button and every night at bedtime she says, "You gonna hook me up?"  It is cute to hear her say that.  She still is totally underwhelmed with the button but I actually am glad to have it back, sort of.  As we head into flu season and just overall sick season it will be nice to have the guarantee of fluids and calories despite illness.  I know she will gain and grow in strength with this and so we are OK with it.

Another change is in my emotions.  Not too many posts ago I had posted about all of Anna's neuropsych testing.  Yes, some of it is true but most of it, in my opinion, is crap.  My child does not have borderline intelligence.  She is smarter than anyone gives her credit for, even me.  She is so witty all of the time and witt requires intelligence.  Have you ever met a witty dumb person?  Yeah, me either.  She is doing so well in school and I could not be happier with her progress in all areas.  She is also in tumbling now and amazes me there too.  I think the sadness about all that happened to her will always come and go but I must always remember her true potential cannot ever be measured by tests and numbers. 

We have started a fund raising page for Anna.  We have tried very hard to never ask for nay help but our resources are getting spread thinner and thinner.  We do have insurance but it does not cover deductibles, copays, time away from work (and I am always out of vacation time), gas to and from appointments, etc.  We do not qualify for any state or federally funded programs except for the medicaid waiver program and we are on the waiting list but it is about 5-7 years long.  I do not want to depend on others but I am swallowing my pride this time.  So if you feel like it and you are able please think about making a donation to Ann's fund.  If you want to support us but cannot afford to then please just spread the link.  That will also help us in ways you can't imagine.  Here is the link:
http://www.gofundme.com/18o74s.

Carly and Gabe are doing well also.  Carly's progress in school never ceases to amaze me.  She is also learning a lot of life lessons this year which are far harder than the educational ones.  She is learning what it means to have some tolerance.  She is learning how to deal with people who consider her sister "gross" and do not want to be around her.  She is such a sweet child and I love her so very much.  I am so proud of the little lady she is becoming!  Gabe, oh my little Gabe.  He is chattering constantly and although we can't understand much of it one word is crystal clear- EAT.  He says it all of the time and he means it too.  He is growing up too fast but the other night Kenneth and I were remarking that we are beginning to see a light at the end of the tunnel (the baby tunnel) where someday in the not too distant future we will not have to be chasing a baby around the house.  Of course we will miss the baby days a bit but we look forward to the kids gaining more independence (and us gaining more sleep, naps, and time away together.)

Like A Car In The Shop, So Is My Child

What a whirlwind!  So I think I left off where Anna was about to be inpatient at Cook's for her vEEG.  It went OK.  Annoying as usual and kind of like being in a jail cell with a 4 year old but it went OK.  You are allowed to leave the room 1-2 times a day for no longer than 30 minutes to go downstairs or wherever inside the building you want to go.  You can go to the playroom as much as you want on your floor but there cannot be another vEEG patient in there because there is only 1 video hookup.  It could be so much worse but geez it is long when you are in the middle of it.  There are always awesome movies to pick from and watch but Anna is not at all big on sitting still so we watched Judy Moody and The Not Bummer Summer in bits and pieces over and over.  They stopped her tegretol when we got there so that also meant she was not at all sleepy, did not nap, and became even crazier than usual.  She threw papers at me and told me she was going to kill me.  She growled at me.  And then in the very next breath she was hugging me and kissing me and telling me how much she loved me.  I kept telling myself how people endure so much worse and that I only had to make it through 48 hours of this.  Then the 48 hours were up and the leads came off and she went to MRI.  I actually had a bit of peace in her room waiting for her until the EEG tech came in and let me know they would be putting the leads back on after the MRI and sending us home with them.  I convinced Anna that as long as we got to go home it would all be OK.  And it was.  She did well them at home aside from missing the whole first week of school.  I was SO nervous about her starting school this week but my fears were put to rest when we were met at the school's doors by her teacher, the nurse, the diagnostician, and an aide.  They were so kind and really seemed like they already cared so much for Anna and they had not even met her yet.  They said they were far more nervous than I could have been and that actually gave me comfort.  You have to care and want to do well to bother being nervous.  I was able to leave her without even shedding a tear.  She did great the first day and even used the potty with her class.  The second day- she was SO over it already.  She said it was "not faew (fair).  I unt (want) to say (stay) home wiff (with) Daddy aww (all) day."  But she went adn had a great day again.  I am so at ease now and I think as they are getting to know her better they are also more at ease too.  They asked if it would be OK to make a potty chart to encourage her.  Um, heck yeah its OK!  Carly is doing well also.  She scored at a 5th grade reading level in the first week this year- she's in third grade.  This is the kid who started last year in remedial reading.  The dyslexia program at her school is amazing and has brought her so far.  I am so proud of her!  Gabe is all over the place and each day brings about a new word- his current favorite is "eat".  So about the vEEG- just like when you take your car to the shop the noise stops, so are things with Anna.  There was not a seizure on the EEG but there were things that indicate seizures are taking place.  It is called interictal epileptic discharges.  I'm not going to tr to explain because I can't. I don't really even understand it.  The activity s coming from the left temporal lobe which is interesting because the cyst they were suspecting to be the cause is in the right temporal lobe.  Who knows?  We follow up on October 3rd and hopefully we will get more answers then.  Until then she is back on her regular meds.  The EEG also showed a pattern of slowing which is part seizure and part encephalopathy.  I hate that word, encephalopathy, and I hate knowing that the words "cerebral dysfunction" and "encephalopathy" are used when describing my child's brain.  Her brain is so much more than that.  Anyway, I have been in a pretty dark place lately but I think the sun is coming out again. 

Witt's End

I am blessed.  I know this.  I know things could be worse.  I know this.  But right now, right at this very moment I feel as if I am going to explode.  I really do not feel like I can take a whole lot more on my plate.  It is full.  People are always amazed at how calm I remain through all that goes on.  The answer is God.  My faith keeps me calm.  The other thing that keeps me calm is that I have learned that worrying takes too much energy and I have exactly zero energy to spare.  But right now, right at this moment, I am pretty sure I have found where witt's end is.

Last week, Kenneth's mom fell off a stepladder and down some stairs.  She was taken to the ER (insert whole other long story here) and then transferred to another hospital with a neurosurgeon because the original ER saw a brain bleed on CT scan.  The second hospital said there was no bleed and sent her home with a broken wrist, stitches in her head, and some serious confusion and forgetfulness.  She will be having surgery on Tuesday to fix her wrist.  Since last Tuesday when this happened she has required around the clock care.  Tonight she will be staying alone for the first time but after surgery will likely need care again.

Carly starts school tomorrow.  I will be able to take her to school but I will not be able to pick her up.  I will be leaving straight from her school to take Anna to the hospital for her 48 hr EEG and MRI.  For anyone who has ever had a child in the hospital you know how completely exhausting this is.  More exhausting than the hospital stay is the thoughts in my mind about why we are having this stay.  For those who haven't read the previous post or who I haven't talked about it to (there are only a very few I have talked about it to because it is just too much) this EEG and MRI are in preparation for possible brain surgery for Anna because her epilepsy is medication resistant.

Kenneth had taken off work to be here with the other 2 kids while I was away with Anna and now the other 2 will be shuffled around because he also needs to be with his mom for her surgery.  I expect it to go well but she is no spring chicken and I fear the anesthesia may bring back the confusion she has had this week.

We went to meet the teacher night and when meeting Anna's teacher (who was already supposed to be prepared for having Anna in her class) I learned she knew absolutely nothing of Anna's IEP, epilepsy, potty training...None of it.  I had relaxed about school and was really thinking things would be fine.  Now I'm not so sure.  Her teacher, by all accounts, is a great teacher.  That is fantastic but the cross between the deer in headlights look and the oh shit look I got from her when the word seizures came out of my mouth is less than comforting.  So when Anna starts school on Thursday this is what I have to look forward to and deal with.

Our regular babysitter Christy who has kept our kids for 4+ years had to have back surgery and will be out for another 6 weeks.  She has already been gone over a month.  Poor girl.  It is not at all her fault and she just keeps apologizing.  We had a fill in sitter but she had to go back to school.  Kenneth's mom was our back up and is clearly no longer the back up.  So on top of all of this other crap we are babysitterless.  It's hard to find a good sitter for any kid but factor in taking Anna to and from school for 1/2 day pre-k, and her seizures, and potty issues...and finding a sitter is next to impossible.  Thank God for an amazing boss and flexible job that I can hopefully work opposite of Kenneth's schedule for 6 weeks so somebody will be home.  It is not ideal for anyone involved but it is an option I am thankful for.

Need I go on?  I would, believe me, but I need to go pack and feed the kids and make sure all is ready for me to be gone.  Oh and I'll probably need a beer or 2 also.

Being A Little Too Human

How did a post a day become a post per week become a post every two weeks become a post every month?  3 kids, that's how it happens.  I love them so much but they keep me so very busy.  I wouldn't trade it for anything in the world!  But do I regret the hysterectomy and ending the chance to ever do this again?  Absolutely not!  I can say it was probably one of the best decisions I have ever made (except for marrying my husband and having 3 beautiful children).  I am still exhausted though.  SO very exhausted but it's a totally different exhaustion than it was before.  Before it was the can't keep my head up kind of tired from the anemia and now it is the kind of tired where my mind just won't stop.  I think about how blogging used to relax me and now when I think about blogging I realize I can't even pick the thoughts apart to record them.  So here's the bottom line.  I'm scared.  I had talked awhile back about Anna's neuropsych testing.  At the time I just thought we were having it done because it would help us to know strengths and weaknesses and how best to help her learn.  And all of that is true.  It did/will do that.  It will help her get services at school.  That was the bottom line for me.  But still, it broke my heart to be told she has an IQ of 78 which falls in the borderline range.  It broke my heart to see the written words "cognitive disorder with deficits in mixed receptive-expressive language disorder, visual motor, visual-spatial, and fine motor skills, short term memory/working memory, and executive functioning."  It broke my heart to be told that setting up a trust for her for when she gets older wouldn't be a bad idea.  It is not that I am letting them tell me what my kid will not accomplish but what it is doing is making me take a hard painful look at reality.  It has been hurting my heart but I keep going on.  Fast forward a few weeks.  I notice Anna is having many more seizures.  She is falling more and her whole attitude is different.  We stopped the periactin in hopes that was the problem and it has helped some but that wasn't all of it.  So I called and spoke with her neurologist and I was hoping for a med change.  Wrong.  Instead we are doing a 48 hr video EEG and another MRI which of course requires anesthesia (this in addition tot he anesthesia she will undergo for the root canal she needs).  At Anna's last neurology appointment we had discussed what another medication failure would mean.  It would mean that the next step could be surgery to remove the offending place in her brain.  When I left her last appointment I was not even rattled by that because I knew it wouldn't come to that.  But here we are, with another medication failure and continued seizures despite trials of maximum doses of 2 AEDs (anti epileptic drugs).  So now I see why else the neuropsych testing had to be done.  It was all in the planning for what Dr. Hernandez knew was coming.  It has to be done prior to the surgery, as does the 48 hr EEG and special type MRI that has been ordered.  I cannot even discuss it with Kenneth.  Don't fault me for that. I'm doing the best I know how to do.  I am always the one to make the medical decisions and I just don't know if I can make this one.  Do I allow the surgery and the great risk that comes with it in the hopes of a cure and the hopes of stopping the damage the seizures are causing to her memory and behavior or do I let her continue to have the seizures and just keep trying different meds?  I don't know.  I don't really care for either decision and the thought makes me want to puke.  So I am scared.  I know God will carry us through this.  I know he will.  He can move mountains.  But today I am feeling just a little too human.  As for her starting school, well, that's a whole other post!

Parents Beware

I cannot for the life of me understand some people.  Especially pedophiles.  I don't really want to understand them.  This post is about a wake up call I've had and I hope it will serve as one for you as well.

As you will notice, on the sidebar of my blog is a live traffic feed.  It is simply something I added to my blog long ago because I just like to see where all of my readers come from.  I can see what people search for when they happen upon my blog so I know sometimes what topics are of interest to other people and other parents of special needs children.  That was the ONLY purpose I had in putting it there.  I never realized how valuable of a tool it would become.

I periodically check and see where people are coming from and noticed a couple of months ago that someone from some place had looked at a post that I had written long ago.  There wasn't much about parenting in that post.  It was more about something we had done as a family.  There were a few pictures of the girls playing in their little kiddie pool in their bathing suits and then some of us camping outside and again the kids were around the campfire in their bathing suits.  They were 3 and 6 at the time.

Each time I checked my live feed I would see that the same location had visited that same post over and over again.  I began to get creeped out that maybe they were looking at those pictures in a way I had not ever intended.  So I decided the best thing would be to delete the pictures.  I deleted them.  I expected the problem to resolve.  I went back the next day and found that someone from that same location was now looking at a picture of my children in the bathtub when they were about 4 and 1 years of age.  I again never saw anything but innocence in that picture. 

It is not enough to tell you that I feel disgusted and sick to my stomach that someone seems to be looking at my sweet innocent little girls in a way like that and that the blog I intended to use to journal is being used in ways that absolutely disgust me.

I called the police department of the town where this person is from and they seemed quite interested in the information but cannot do anything without the IP address of the person looking at the pictures and I have no idea what the IP address is.  I have removed the pictures but I am saddened that there cannot even be any innocent pictures of my kids playing in the bath together or in the kiddie pool together.  Who doesn't have and treasure those pictures of their children.

So fellow bloggers and others who have things like their facebook accounts wide open beware of what you post.  Sometimes those looking at your sweet innocent cute little children are seeing them as much more than that.

Square One

I guess I left off with us still at the hospital and me in a rage.  I was so frustrated.  Then as quick as Anna got sick, she seemed to get better and I began to question my sanity and ability to understasnd what was going on with her.  They started her on clear liquids and she did fine, then she ate a full dinner and other than some rancid diarrhea she was good.  We got to finally go home on Saturday with what appeared to be a case of post viral gastroparesis which resolved on its own.  Yay!  Anna ate great for the first week or so.  She ate everything that didn't eat her first.  She was wanting scrambled eggs, 3-4 at a time, for almost every meal.  Our babysitter took her to eat catfish and she ate 4 fillets.  She was an eating machine.  Notice I said was.  Then as quickly as she had started eating she stopped again.  There is no vomiting and there are no complaints of nausea or "I'm afraid I'm going to puke up" as she says it this time.  She just won't eat.  Great.  We are back at square one.  I called the GI and they couldn't get us in until August.  Our pediatrician got that moved up and we saw the GI last Wednesday.  He started with doubling her reflux meds and adding back the Miralax to see if that is the problem.  So far it has not made any difference.  He told us she needs no less than 1400 calories a day just to maintain.  We are having a good day when we get 600-800 calories in her.  She is losing weight- precious weight that took years to gain.  If she is not eating in the next 2 weeks the GI wants to try Periactin again.  It did increase her appetite a bit the first time but it also made her crazy.  She was beating her head into the wall and biting herself and just having all kinds of self destreuctive behavior.  Kenneth and I are not sure if we want to go that route again.  If that doesn't work he wants to try some feeding therapy and then likely the G button again.  I'm not afraid of the button and quite honestly at least she would get the nutrition.  She has bruises over all of her bony prominences and she is just looking ill again because she is so thin. 
Other than that things are going well.  Although I usually thrive on routine, the summer break has been nice.  We still have Gabe on a pretty tight roiutine but have relaxed quite a bit with the girls.  We have even taught (err trained) the kids how to sleep in until 8:30 so that's nothing short of a miracle.  I am mostly all healed up from my surgery and get so excited everytime I go to Wal Mart and walk past the tampon isle and realize I will never need another one of those as long as I live.  That is something worth celebrating.  If you see Tampax stock take a dive it's because they know I am no longer buying 2 boxes a month to keep up with my henious periods.  I have 2 more weeks until I am supposedly 100% back to normal.  I look forward to that!  By the way, blogger's spell check is not working and I refuse to do it so deal with my typing errors- I can spell but my typing leaves something to be desired in the accuracy department.

Isn't this guy adorable?  Every now and then he and I get to go out alone and he sits in his car seat and smiles the whole time.  He is not a fan of sharing me.